Team Donavynn

Donavynn has relapsed...

2011-05-03T16:37:00.000-05:00

http://www.facebook.com/pages/Team-Donavynn/86273264326

It has been easier to post on his facebook page lately so I don't know how often I will be able to post here but this is the link to that page if you would like to follow his story closer. All updates from 4/11 are posted on his FB page.

Chemo may be over, but a new journey is just beginning...

2011-01-25T08:35:00.003-06:00

Now that the nearly 5 year whirlwind has come to an end, we have set foot into all new territory. But first let me explain somethings that many people do not understand about leukemia and treatment. Lymphocytic leukemia has one of the longest treatments of all cancers. This has been determined over years of research and fine tweaking protocols that sadly are still being "tweaked" They have found that this longer regimine seems to work the best. They have tried ones that are longer and ones that are shorter but the ultimate goal is to find the one that gets rid of the cancer for good with the least amount of long term side effects. Donavynn got more than the average treatment due to his CNS relapse a mere 9 months away from completing his protocol that should have been 3.5 yrs long. In addition to this extra chemotherapy he also received cranial radiation. Many people have asked "Is he in remission" the answer to that is yes, and that we pray he will stay that way. When I explain that he has been in remission for years (bone marrow remission since 3/06, CNS remission since 9/08) they ask "then why is (now was) he still getting chemo?" That is due to the reasons listed above & below. Remission does NOT equal a cure and though they can not find cancer cells in his blood at that time does not mean that they aren't hiding somewhere... like we sadly learned in 2008 after a routine lumbar puncture revealed his relapse. So they treat longer to assure that they got all the cancer cells, because it only takes 1 to raise hell and eventually lead us back to a WBC count of 60,000.

The last month and a half have been relatively uneventful, which we are beyond thankful for. Boring is a blessing in this household. He has had an ear infection that has been very difficult to treat. His one tube fell out and w/i less then a month he had a raging ear infection. We have an appointment with ENT next month and are praying that they will put the tube back in when they remove his port a cath. That is another bit of news. After a recent trip to the ER and them once again causing him greats amount of pain because they were unable to access his port he informed me that he wants it out NOW! lol I then discussed with him the reasons we were keeping it in (monthly pentamadine [an antibiotic to prevent a potentially fatal form of pneumonia that strikes immunocompromised people] and IVIG for 6 months after completing treatment). After hearing about the possibility that they would be unable to start an IV for these infusions and that the port is just easier to access he has decided to keep it for a few more months to complete these meds but then he wants it out. I personally wanted him to keep it for a year, stats show that the first year off treatment is the most critical and I feel removing it any sooner is tempting fate, but I compromised with him on this and feel that after all he has been through he deserves a say where he can have one, after all I'm not the one being stabbed in the chest with a needle. So long story short, port will come out in about 4 months and hopefully the missing ear tube will be replaced at that time.

This months follow up appointment went pretty well, but I had much to discuss with his medical team. 1st and foremost being his recent report card. Going into this year he was ready. We had him tutored though out the summer and tested extensively prior to beginning this year in first grade. All signs pointed to him being ready. So after much discussion we decided to go ahead. His report card shows that he is struggling. His teacher states that he is having a hard time retaining information that he has learned and the possibility of him being dyslexic &/or dysgraphic has also been tossed around. Everyone involved at this time feels that it is a good time to do some testing to see if he has a learning disability.

"Statistics vary, but medical literature estimates that a third of all young

cancer survivors suffer from cognitive, social and emotional impairment due

to the lasting effects of a chronic illness and the debilitating treatment to

cure it. Patients under age 8 are affected more than their older counterparts."

http://www.taxtyranny.ca/images/HTML/Pharmacartel/Articles/Cancer/Articles/lingering.pdf

"Some types of chemotherapy, given either into a vein (intravenous, or IV chemo) or directly into the spinal column (intrathecal chemo), can also cause learning disabilities in children. These problems are more common if higher doses of certain chemotherapy drugs are used, and if the child is younger at the time of treatment. Learning disabilities are more common in children who get both chemo and radiation to the brain.

The learning problems, often called cognitive impairments, usually show up within a few years of treatment. They may be seen as: Lower IQ scores, which can vary depending on how intense the treatment is

Lower academic achievement test scores

Problems in memory and attention

Poor hand-eye coordination

Slowed development over time

Behavior problems"

http://www.cancer.org/Treatment/ChildrenandCancer/WhenYourChildHasCancer/childhood-cancer-late-effects-of-cancer-treatment

It breaks our hearts to see that he may have more complications to cope with. But honestly, of all the possible side effects of the treatment he has received, if this is his biggest problem we will be happy and feel very blessed! We are to meet with the child psychologist at his school in the beginning of next month to sign the papers after all the data has been gathered, and then the testing shall begin. I will keep you all posted on how that turns out. Part of me is simply praying that he is just lazy lol. I'd like for one of his problems to be a "normal" one but we shall tackle this together as we tackled the other obstacles he has had to overcome in his short 6 years.

Now on to a happier topic. We have finally got the ball rolling for his Make-A-Wish trip. We had debated over this long journey when would be the best time to do this and we waited for a few reasons one being that we wanted him to be old enough so that this wish is actually HIS wish and not something the rest of us think he would want, we felt it gave him something to look forward to when things weren't so pleasant and we wanted him to be old enough to remember all the fun he is going to have. The Make-A-Wish foundation contacted us last night to get some information and now they are waiting on his medical approval and then they will meet with him and go from there. We have presented him with many options for his wish and so far he seems set on wanting to take a Disney Cruise. Though, he is 6 and this could change at any moment. :) We will be discussing the best time to do this and then will set a more definite date, we were originally thinking November but this could change because we want the weather to be the best it could be...

So with all that we have in the works right now there is a lot going on, there is much to do and so much for me to keep everyone posted on. I will do so when ever I have any new information. For now I will close as this entry has become much longer than I intended. Please continue to pray for Donavynn's health as we all know that cancer an unpredictable little asshole.

Party Time!

2010-12-04T21:15:00.005-06:00

Today was Donavynn's long awaited end of chemo party! It was amazing and so much fun. The kids had a great time dancing, playing the bean bag game, visiting w/ Spidermand and 2 of the Sedalia Outlaws players, and swimming. The cake was amazing! Thank you so much Mike Elder! I was so sad to have to cut it! lol

Donavynn beat on the cancer pinata and litteraly beat the crap out of cancer! As you can see above. Some of my coworkers helped w/ the cost of food etc and I was so grateful to see all of my friends who brought their kids or came alone to show their support for our little warrior. Donavynn was very excited and grateful to everyone. I'm sure that this was a day he will always remember. I am super exhausted so I will post a longer update some time this week. He goes up Monday to get his Pentamadine and have his blood work done and he will also have another party up there. I have videos of him beating both his pinata's today that I will post asap.

Another Long Overdue Update

2010-11-25T21:30:00.003-06:00

Hello all, I know I promised a more lengthy update the next day after the last post. I apologize. 3 kids and work gets the best of me and time seems to slip on by. Anyway, I am thankful to say that the last few weeks have been relatively uneventful. This is exactly how we like it! Donavynn has been going to school and enjoying life. He has been pretty tired and his sleep schedule has been off. He has been having some more frequent night terrors which I think may be due to all the recent changes. He did ask when we told him that he would finish treatment soon how he would stay healthy if he stopped taking his medicine. This broke my heart. So I wonder if this concern is causing him more stress than he lets on. Although it could just be related to school and the other changes that have occurred lately w/ the birth of Lyzzie, mommy working etc. But overall, no major complaints. Saturday 12/4 we will be having his "No more chemo" bash. We are all very excited. I bought him a special pendant - a St. Peregrine medal (the patron saint of cancer pts) that I am going to have it engraved w/ "Our Hero" We also bought his cancer pinata so that he can beat the crap out of cancer. :) The most exciting news about his party by far is the email I recently received from icing smiles telling me that 3 time Ultimate Bake Off Champ (TLC) Mike Elder (www.mikeelderonline.com) has agreed to make his cake. We are so thankful and so excited to see what he comes up with. This is his dream cake so it should be amazing. I am so grateful for all who have donated to our family over the course of his treatment and for those like Mike and my coworkers who are making donations big and small to help make his party possible. This journey has lead our family down an amazing path. One of great sorrow and heartache but also one of great learning and faith. We have met some truly amazing people on this road who have taught us that true friends due exist. You see them when all the others fade into the distance when the path gets bumpy. They are the diamonds that shine, and give you hope that all is not lost and that you aren't walking this difficult path alone. Our family has been blessed w/ friends like Abbey who would drop everything and bring us dinner in the hospital while he was inpt on many occasions, come and have PJ dance party's with him and who even refused to reschedule her visit even though he may have ended up in the hospital stating "You know I don't have a problem staying in the hospital, I'm coming to see you no matter what" And friends like Rachael who would come sit at the hospital with him while I had to work and who helped me all summer the year we met work on a big fundraiser that turned out to be very needed because a week after, was when Donavynn relapsed. His illness has strengthened my marriage. Every marriage has its tests, some big, some small. This was colossal and yet it made us turn to each other and grow stronger rather than turn away from each other. It made us value every day and every accomplishment knowing that each and every one was a gift to us, a gift we at one point wondered if we would ever see. I remember when he was diagnosed, people would say "When he grows up..." "When he turns 4,5,6..." It kills me to say it but my first thought was always "What if we don't get to see that birthday, what if he doesn't get to grow up?" So with every small achievement I praised God and thanked him for holding my sons hand when things were easier and carrying us all when things were at their worst on this ever so difficult journey. I've learned that those who love you will support your decisions and not judge and those who don't, don't matter. I've learned that distance doesn't always fade friendships, because there are still a few I hear from every now and then that call or message to check on him and we pick up like we hadn't missed a day. I've learned that eventually all your hard work will pay off and it will be worth it. I once felt thankful that Donavynn was so young saying "At least he won't remember it" but now part of me hopes he remembers his struggles so that he can see how much he overcame to become the amazing young man he is and will continue to grow to be. I want him to be proud of his accomplishment, and he can't do that if he forgets. I am saddened that he lost his childhood to cancer, that he had to spend it fighting a disease that should never strike a child. But I am grateful for the way he handled it, with the grace and courage of someone far beyond his years. And I am grateful for the lessons his struggles have taught our family. He has endured more in his 6 years than many do in a lifetime. And being his mother and watching him fight through this, endure the pain he did, suffer the way he did through every treatment and every illness was beyond difficult. But every time he came out on the other side with a smile my heart swelled with pride because this amazing warrior is MY son. This strong fighter is my flesh and blood. And I could not be more proud of our families HERO! We pray that he will stay in remission and ask that those of you who pray for him continue to pray for that as well, because remission does not mean cure. He has to stay in remission for at least 5 years after finishing treatment to be considered cancer free and the first year is the most crucial and therefor the most nerve wracking. But I'm not going to dwell on the fear since I have spent most of the last 5 years in fear. For now I will focus on the joy of his accomplishment and the excitement to watch him celebrate this amazing achievement. So I say: Way to go Donavynn! You are truly amazing and I could NOT be more proud to be your mommy! I may be rambling at this point I have been up since 5 and worked 13 hours today. So I will close. But I hope to see all of Donavynn's supporters who are available at his party. Please come celebrate with us! I will try to post more often, but can not promise. :) But I will do my best.

Long overdue Update

2010-11-09T22:09:00.002-06:00

I realized that updates have been so few and far between lately. Things have been very very busy w/ the kids and me working now not 1 but 2 jobs. But I thought that today needed an update - Donavynn finally completed treatment yesterday 11/8/10. He has to go back up monthly for the next year and will need to get pentamadine (an antibiotic to prevent pcp pneumonia) for the next 6 months and he will likely need IVIG for awhile. But the chemo is done! It feels so incredibly surreal. I will try to write a more detailed update tomorrow right now I'm having a hard time keeping my eyes open but wanted to share this amazing news.

Long Overdue Update

2010-04-24T14:36:00.003-05:00

I realize that it has been a loooooong time since I posted. I did add the facebook info b/c for awhile I was posting there more often as it was easier to do. Donavynn has been doing well, and our family has been extremely busy. We welcomed our new addition Elyzabeth Ivy on April 6th at 5:11pm. Donavynn and Cheyenne are so happy to have a baby sister! The pregnancy along w/ Donavynn's treatment and my work schedule (I finished school back in December and passed the boards so I'm officially an RN,BSN.) has kept us very busy, especially at the end when I ended up in the hospital for a week w/ pancreatitis at 37 weeks.

Donavynn is now in the maintenance phase of treatment and if all goes according to plan this time - he should finish treatment in November. I am trying to come up w/ ideas for his end of treatment party. So far, I got nothing lol. But we have time. In the beginning of this phase he was getting fevers a lot and we were spending a lot of time in the hospital. After doing some research and talking to other families we asked for them to check his IgG levels. (Immunoglobulin - helps the immune system fight off infection) And come to find out they were incredibly low - so problem solved, he now gets monthly IVIG infusions and has been back to his old self. His ANC has also been up where we like it which has helped a great deal - this not only helps prevent infection but allows him to get his full chemo doses which of course we prefer b/c we want that damn leukemia gone for good! For awhile he wasn't able to go to preschool b/c his counts were so low, it was at that time that I contacted the local public school about a tutor for him, no sooner did he get his tutor his counts recovered so thankfully he has been able to attend school and have a tutor 2-3 nights a week so he is finally catching up with where he should be. We were hoping that he would be caught up enough to start first grade next year but at this time we aren't sure if that will be possible, but we are keeping our fingers crossed. That's about all for now. I will try to post more often if time allows.

Chemotherapy and Radiation

2009-10-15T18:39:00.003-05:00

I have alot to discuss, but I'm not sure how much I'll get out tonight as I am so exhausted. We had to leave by 6 am and just got home at 6 pm. Donavynn had to get chemotherapy and hydration from 8 this morning until 2 and then we had to head over to Overland Park to meet w/ his radiation team. They were great and he was so brave as usual. I was a little concerned because a couple months ago when we showed him the video of another child getting radiation he kind of freaked out. But today while they were fitting his mask I had to remind him repeatedly to keep his mouth closed because he kept laughing. He was just incredible as always. He's super excited that he gets to keep his mask when he finishes radiation lol. I spoke with the doctor and she took the time to answer all of our questions. He can be in the sun, which at first we didn't know about, but because his dose is so low it should be just fine. The success rate of this protocol is very promising - so here's hoping. And secondary cancers are very rare and if they occur it is usually 20+ years down the road so lets hope he stays healthy after this as it is such a low dose. They also don't believe it will affect his counts, though it can and that he shouldn't have any skin burns though that is possible as well, especially with as fair as his skin is but with the dose as low as it is hopefully he'll be just fine. His schedule for the next month is as follows

10/23 - Bone marrow biopsy - if he makes counts he'll start week 51 which means Vincristine, starting Dex and Erwinia shot number 1

10/26 - Erwinia 2 10/28 - Erwinia 3

10/30 - Erwinia 4 (wk 52 Vincristine)

11/2 - Erwinia 5 11/4 - Erwinia 6 and if he makes counts will start radiation

11/5 - Radiation

11/6 - Radiation and Erwinia 1 (wk 53) (start 2nd round of Dexamethasone)

11/9 - Radiation and Erwinia 2

11/10 - Radiation

11/11 - Radiation and Erwinia 3

11/12 - Radiation

11/13 - Final Radiation and Erwinia 4

11/16 - Erwinia 5

11/18 - Erwinia 6

Then we see how his counts are and they determine if GCSF is needed to boost counts to at least 500. The next round after this craziness is long term maintenance. I'll try to update again when I have time and am not quite so tired. Please continue to pray for my little boy!

Ara-C stay updates from morning to early evening

2009-07-31T15:49:00.001-05:00

This stay, as with all Ara-C stays has been a rough one. The diarrhea started last night, the fevers are starting the morning and the N/V has been going on since before we even started the chemo yesterday. He is feeling ok for the moment, but his temp is rising. However, we look at it as... if it is making him feel this bad then it must be doing it's job. We got the GCSF shots delivered today and he will be starting those tomorrow after his Erwinia shot. We are supposed to go home tomorrow but w/ the fevers and vomiting it isn't likely. They usually keep us at least one extra day if not 2 b/c he gets his Erwinia tomorrow and then he is due again Monday so they hate to send us home Sunday to turn around and come back up Monday. But during these two weeks it doesn't really matter a whole lot, we are here at least every other day anyway. We just pray that he doesn't get sick and we are happy. But it took the GCSF 2 weeks last time to makes his counts recover... We really hate the nightly shots of GCSF followed by the every other day shots of Erwinia but he understands that it is all to make him better. That is about all for now, just overall sick feeling. Praying he starts to feel better soon... at least as soon as he finishes his last dose of Ara-C at 6 am tomorrow. Thanks for the prayers.

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Late Morning

His temp is now 104.7, and he is a little hypovolemic. His feet are pale and he's tachycardic so they are giving him a bolus of normal saline now. They gave him trilasate to take the fever down and hopefully that will start working soon. They are also going to schedule Benadryl. One of the doctors feels that the fevers from the Ara-C may have an allergic component. So we are going to try that, I hope it works but if it does I just wish we had figured that out sooner as we only have 1 more Ara-C stay after that. They drew cultures which is standard when they spike a fever, and a CBC if he is neutropenic they will start antibiotics as a precaution. They are monitoring his BP, last check was 85/63 which is a little low but he usually runs low anyway. I'll keep you posted with any new updates.

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4pm

His fever is on it's way down. It has been fluctuating most of the afternoon and he ended up getting 2 bolus's of NS. But they did the trick. His capillary refill is good now and so is his coloring. His temp was back up to 104.7, so they gave Tylenol and have that scheduled for every 4 hours in hopes that once we get it down it will stay there. The last time they checked it it was down to 102.5 which was a big improvement in just 30 minutes or so. He is playing with his cars in his bed now which is a huge improvement from the rest of the day. That is about all for now.

Hr 42 Level

2009-07-10T12:31:00.001-05:00

Is 0.65 - not low enough. They will draw another level between 3 and 4 tonight (hr 48) and they want that to be at least 0.4 or less if not they up the leucovorin I believe. So he isn't clearing as fast as last time, which I don't understand b/c he is doing so much better this time w/ eating and voiding and BM's - which he needs to do to clear it from his system. Oh well. Hopefully it will be below 0.1 sometime tomorrow so we can go home. We are tired of being here already, ready to get home and enjoy the little time we have between now and our next admission. Keep praying that he clears fast! Thanks for all the support!

My Child is Brilliant!!!

2009-07-10T09:25:00.000-05:00

Ok so Dr. Shore asked why I have a giant NO COLACE sign on his wipeoff board. Well it's because he doesn't need a stool softener that has never been an issue. The chemo never stops him up if anything it has the complete opposite affect. And I have always thought that it is so sad that he knows the name of his meds and what they look like. That he can call them by name. But this morning while I was in the shower the nurse brought in colace. Thankfully he told her he doesn't take a red pill! lol So I think she left to get it in another form and he called me and said "Mommy, she's making me take a red pill" so I told him I'd be right out and if she came back to tell her that I said he doesn't need that. Now he is always so polite and cooperative but if he knows he isn't supposed to have it, he isn't so nice apparently. She came back in and I heard him. "I DON'T NEED THAT!" Then he screamed for me! lol I am so proud of my little man for speaking up for himself. If more patients were as aware and would question things, there would probably be alot less errors. As we are only human and humans make mistakes but we need to trust ourselves that as the pt we know more about ourselves than others. I have no problem when a pt has asked me... "what's that for?" "I don't usually take this" Then I can put them at ease by explaining why &/or look again and make sure there wasn't an error b/c often time doctors order things in the hospital that the pts don't take at home. Ok, off the soap box, just thought I would share my little moment that my son showed me once again how amazingly smart he is!!! Off to play in the playroom now!

Methotrexate Stay AGAIN

2009-07-09T17:01:00.001-05:00

We got here yesterday at 8am and were in our room by 9:30. He finished his chemo at 3:30 today and drew his initial level which Is 70.11, and it needs to be below 0.1 before we can go home. So now we wait. He has done really well this time around. He has been eating and drinking. Not much, but anything is better than his usual nothing. He has had a little nausea but other than that it has been a good stay. I'll keep you posted w/ his levels when they are checked. I believe they will be checked again at 4 in the morning or so, but I'll have to double check. Thanks for all the prayers!

Waiting, always waiting...

2009-06-24T18:16:00.001-05:00

Donavynn has his 6th and final Erwiinia shot for about 4 weeks. But last night started a crazy whirlwind for our family. It started when Donavynn's temp kept fluctuating between 100.6 and normal. So irritating, b/c it was 11:30 before we finally went to bed if you want to call it that, and the nurse on call wouldn't budge on their "protocol". So we know Monday has ANC was 0, so this is really concerning to me. Donavynn, Rachael and I finally head to bed (she went w/ me this am so stayed here last night) at 1:30 I wake up to Donavynn screaming that he is going to be sick, so off to the bathroom we run. Thankfully my husband was home by then and came to our rescue, as loving and supportive as always. We got things settled down and headed back to bed. But for the next 2 hours or so Donavynn was incredibly antsty (btw we are monitoring his temp throughout this and it's still bouncing) and whining in my ear. He says he is scared, but that is all. Dave finally comes to get him at 3:30 when he realizes that we are still up, and then Dave comes to get me at 5:30 because Donavynn's screaming that his butt hurts, and it is at this point that I wish these oncologists could spend just one of these nights w/ our kids so that they would understand why we are so frustrated when we hear "call me back when it hits 101.5" We are worried, and nausea and vomiting (2 weeks after finishing chemo), "almost" fevers, and booty pain sure don't help us to relieve that worry. Anyway, we were back up at 7 to head up to clinic. Thankfully they drew cultures, and all went well w/ his shot. But his ANC is 10, platelets are 29, and so we have to go back up on Friday, b/c the cut off for platelet transfusions is 20. We were supposed to be done for 1 week, going back up again next Thursday for his LP, but no such luck. Provided he doesn't spike (he's still hovering at 100.5) we have to check his counts locally tomorrow night to save some time Friday morning. The only reason I'm not totally freaking out is b/c they drew cultures so even if he doesn't spike at least they will be watching for a problem and can call us to come up. Oh and the booty pain, he has a small laceration on his bottom thanks to all the poo from the chemo. They said it is itty bitty so just keep it clean and give him sitz baths to help soothe him. So I'm praying that that doesn't become a bigger issue. I guess that is all for now. One crazy night, and now we wait, for culture results, for platelets, for the fever to go away or come full force and take us back to the hospital. It is heartbreaking to see him like this. I couldn't even get him to walk into clinic this am b/c his legs are so sore from getting daily or BID shots for 2 weeks. So please send up prayers that he starts to feel better and that his cultures are negative. I'll post an update when there is news to share.

Update

2009-06-20T14:01:00.000-05:00

It has been a long week beginning w/ coming home Sunday night to turn around and head back up Monday morning and then blowing a tire on the way home! lol But he did great w/ his Erwinia shots this week and has 2 more next week. (Monday and Wednesday) He has been on the GCSF and his counts still tanked but we are hoping that they are recovering now and that we won't have an illness this time. I made a boo boo last night, forgetting that he has tubes in his ears I encouraged him to lay down. Consequently his ears will killing him last night. The doctor told me to use his Ciprodex ear drops to prevent an ear infection, so hoping that will help. I felt so bad, he's had them for a year and it just slipped my mind. Other than that all is going good here. He and all of us are missing his sissy. But she is having a blast w/ her GG. That's all for now, please pray that he remains fever free so we can stay home and stay on track w/ his treatment schedule.

A Long Night

2009-06-13T09:46:00.000-05:00

Donavynn was up most of the night b/c of his upset stomach, diarrhea and fever. He finished his last dose of Ara-C this morning at 5. So I'm hoping that these symptoms will clear up now but after his ANC jumped so much overnight I'm not sure. We are waiting on a stool sample b/c as of right now his blood culture is still negative (Thank God). The doctor explained this am that their counts can do that as a simple stress response to a fever, however this has never happened to Donavynn. If his counts jump, there is a reason. So anyway, w/ his diarrhea we are trying to rule out other possible sites of infection. Right now he is sleeping. I'm hoping this afternoon will be a better one for him, and that the diarrhea, and vomiting will clear up. I am praying that for once he did something atypical for him and his counts are a reaction to his fever. Just once, I want my fears to be wrong. If they are we could be home tomorrow, if not who knows... so right now things are still pretty up in the air and time will tell. I'll post again when I have more information. Unfortunately if we don't get his stool sample soon we won't know anything today as they only run the C-diff tests once a day. But as soon as I know something I'll post it.

So Much For That...

2009-06-12T19:08:00.003-05:00

Ok so he did great until 3 o'clock this afternoon - his temp rose up to 102.2. So they drew a CBC and cultured him. His ANC was 1140 yesterday and jumped to 4770 today, which shouldn't have happened since he had cytoxan a week ago, if anything they should be tanking, which tells me he likely has an infection. So my guess is his culture will pop positive by morning. I just hope it isn't anything too bad, and am thankful that we are here so they can nip it in the bud. So chances are we won't be going home tomorrow. Other than that he has been doing pretty well today. He has slept alot but he did perk up for awhile, talk to daddy on skype, sit up in the chair and play his DS, let me give him a sponge bath and even played w/ his lego's so overall he seems to be feeling pretty good. He just got his first evening dose of Benadryl/Reglan b/c he was getting sick and now he's resting again. Please pray that whatever is going on isn't anything major and is easy to fix. My poor kid, I would just like for something to be easy for him.

So Here We Are...

2009-06-12T09:04:00.000-05:00

We have had a great week. Wednesday Cheyenne left for Georgia. It gets a little easier for me every year, b/c I know that these breaks are good for her w/ all the turmoil in our lives from clinic appointments and light night trips to the hospital. However, it gets harder on Donavynn as he is now old enough to understand and to miss her. She had a safe trip there and we are thankful for Skype, so we can video conference. After that we hung out w/ Abbey and Meghan and waited for my parents plan to land so that we could all go out to dinner. It was a wonderful night. We stayed w/ Abbey and Meghan that night b/c we knew that he was going to be admitted yesterday, so they were kind enough to give us a place to crash so we didn't have to drive all the way home and all the way back. It made Donavynn very happy to spend the night there. Yesterday we ended up in the clinic from 9:30 until 4:50, it was a long draining day. But they got his chemo started 2 hours sooner than they usually do which was nice. He has had some nausea but we are keeping his antiemetics scheduled so that hopefully it won't be as bad as usual. He will get ativan and zofran through the day and Benadryl, reglan and zofran through the night. The ativan seems to work better but it also keeps him up all night so that is reserved for the daytime. So far he hasn't gotten his usual fevers that he gets from the Ara-C and we are praying that maybe this one time he won't. But he still has 2 more doses so time will tell. He had a pretty good night last night - slept very well and only got sick twice. He is still pretty wiped out this morning from the benadryl but I'm hoping he'll perk up a bit. I'll update again later when there is more to tell. A little side note: I am halfway through "My Sister's Keeper". I wasn't sure if I would be able to handle it b/c of the subject content. But so far I've been ok, and it is a great book. It takes a look at the how the whole family dynamics change when you have a child w/ cancer. And it really makes you think... It's a great book and I strongly recommend it so far. Can't wait to see the movie.

So far...

2009-06-09T14:30:00.002-05:00

He made counts as of today. They will check them again on Thursday morning to make sure that they are still good but as of this morning his ANC was 1530. That is awesome and I'm really hoping he holds. Cheyenne leaves tomorrow morning for her summer w/ her grandmother in GA. And my parents get back from Florida tomorrow night so we are going to meet a couple of my friends in Independence for dinner, then we'll be crashing w/ Meghan and Abbey so we don't have to get up and drive back to the city Thursday morning. So it should be a fun night before he is admitted again. He is NOT happy about any of this. He is tired of being in the hospital and I don't blame him. Especially for the Ara-C, that is so hard on him. We usually wait until his ANC starts to drop after the Ara-C before we begin the GCSF, but being that he just got Cytoxan last week they are going to drop faster if he holds until Thursday so we'll hopefully start them sooner. He will also start the Erwinia shots up again, all these leg pokey's are so brutal for him.

His hair is doing some weird stuff! lol He has a bald spot in the back that is growing back in, the top is growing longer by the minute it seems and then in between all that he has a few small bald spots. The Ara-C will very likely wipe the rest of it out again, which he is happy about. He likes the bald look. But let me tell you, after he finishes treatment buzz cuts will be off limits! lol I would be happy if he never had to be bald again. That is the hardest part about his treatment, when he is bald he looks so sick, but when he really was sick, before he was in remission he didn't look sick b/c the relapse was in his CNS and he had so signs or symptoms. Well that is about all for now, we all have a busy week ahead of us. So I'll post again once we get to the hospital and find out if his ANC held for admission or not.

Latest Update

2009-06-06T16:14:00.000-05:00

Donavynn is supposed to be admitted for HD Ara-C on Thursday. We will have his counts checked on Tuesday (Cheyenne leaves for Georgia on Wednesday so we can't check them then.) It is very unlikely that he will make counts b/c he just received Cytoxan on Thursday. But his hemoglobin was low (9.6) so we may need to stop in after seeing Cheyenne off and get some blood. After he does get the Ara-C we start the Erwinia and GCSF shots up again. He hates that so much, b/c both of them burn. I just pray that he tolerates them well and stays healthy this time, last cycle left him w/ an E. Coli infection which he thankfully fought off pretty quickly. That was a relief since the infections that he had the last time he had Ara-C prior to that were really nasty and left him hospitalized for weeks. This month is hard as he was supposed to be finishing treatment had he not relapsed. That is such a hard pill to swallow. But we are getting close to his schedule lightening up again. At least we can see a light at the end of this tunnel. He should finish up this insane round of treatment in October, maybe later depending on delays b/c of low counts. Then he'll have his 2 weeks of radiation (which we are dreading b/c of all the side effects of that in the short and long term) and then he'll begin maintenance again for 1 year. I want to be happy that maintenance doesn't seem so far off but I also worry about what all of these drugs are doing to his body and what the future will hold... these high doses of chemo and the radiation can cause secondary cancers, heart defects etc. I try not to think about all of that, but it is hard to be happy b/c the last time we got close and started to relax we heard that nasty R word. It is hard to believe that it has been more than 3 years since Donavynn started this battle. Time has gone by so quickly and I remember a time when it just seemed to stand still. Well I guess that is all for now. We are enjoying this week home - trying to find fun things to do before his sissy leaves. I hope everyone is enjoying their weekend.

At Clinic

2009-06-04T09:52:00.003-05:00

Donavynn gets his Cytoxan and Etoposide infusions today. So counts will be dropping this week. :( Lets pray for no fevers! We have a week of fun planned, because Derek is staying with us while Nana and Grumpy are on vacation in Florida. Last night I got my tattoo for Donavynn that I have wanted to get for a long time now. I planned on doing it when he finished treatment but since that is at least 1 1/2 years away and he was supposed to finish treatment this month had things gone as planned I decided to get it done now. That's all the information for right now. Hope everyone is doing well and I'll post an update when there is more to tell. Lets pray that we will have a quiet, uneventful couple of weeks!

We Are Home

2009-05-31T22:26:00.001-05:00

Donavynn's hour 48 level was 0.16, just over where we needed it to be. So they drew a level at hour 60 which was 0.07 so we got home this morning! It has been a nice day and we are so happy to be home. Heading to bed soon! Have a great week!

Hour 42

2009-05-30T13:24:00.002-05:00

We have a record here, let's hope he continues on this path... his level now is 0.3! He's never been that low at hour 42, so we are hoping he clears the rest between now and 4 pm, if he does, and I'm not counting on it b/c that would be a 1st, but we could go home tonight! We are praying, it would be so nice!!! But either way, if we can't go home tonight at least we will likely be leaving in the am. The playroom is finally open again so we have been in there all day. I'm trying to get him to take a nap now... but we'll see. That's all for now.

Last Night's Level (Hour 24)

2009-05-30T08:48:00.003-05:00

Was 45.25. They will draw another level in about an hour. After he finished his chemo last night we were able to leave the floor so we headed outside and Donavynn spent some time on the playground. After fighting sleep for the ENTIRE day yesterday he finally crashed at around 9 o'clock last night and slept great through the night. This morning he had a little cereal and now he seems to be feeling tired again. I'm very eager to see what his level will be at 10, and then I am pretty sure they will draw another level tonight. So I'm hoping he clears fast this time. That's all for now. BTW Donavynn now has a page on Facebook, you can become a fan! Updates are posted there as well.

http://www.facebook.com/pages/Team-Donavynn/86273264326?sid=e04ade83b29d15d82a44afcea1cd6f67&ref=search

Donavynn got to...

2009-05-29T14:52:00.003-05:00

Cameron Goldberg, Jackie Bates, Ryan Succop, Donavynn and Tanner Purdum
Meet some of the chiefs!!!

A Pretty Good Night

2009-05-29T08:06:00.002-05:00

Donavynn slept well last night. I had to wake him up every few hours to go to the bathroom. Which was a nice switch. Most of the time he wakes me up every hour or so. He seems to still be feeling tired this morning but hopefully he'll perk up soon. We are going to have some fun today doing some school work and playing with his lego's etc. He doesn't want breakfast this morning but doesn't seem to have too bad of an upset stomach. We'll see how the day goes and maybe he'll want to eat something later. Abbey and her sister came to visit last night and we had a wonderful pajama party - music, dancing and all. Donavynn seemed to really enjoy himself and I know that we did! That is what I think tired him out and why he slept so well. That's about all for now. I'll post again later when we get his first methotrexate level back.

Methotrexate Stay AGAIN

2009-05-28T17:04:00.000-05:00

We got here at about 9:30 this morning and we actually got to our room by 10:30. Donavynn has eaten pretty good today, which is probably the most he'll eat while we are here. The Methotrexate seems to make him feel very nauseated. So far things are going good. We have been playing with his lego's, and even got in a nap. His "girlfriend" Abbey will be coming to visit some time tonight w/ her little sister, and Donavynn is really looking forward to that. They started his chemo at 4 and it has to run for 24 hours, once it is done they will check his levels and we'll see how far we have to come before we can go home. As I have mentioned before in his blog he has to be at 0.1 or less before we can be discharged b/c the Methotrexate is nephrotoxic.

Donavynn's Birthday

2009-05-16T08:45:00.004-05:00

   Donavynn and Tim

   My Mr. Strong!

   The party has arrived!

We were very sad that Donavynn was going to have to be in the hospital on his birthday, but thanks to much prayer he did so much better than anyone expected. The doc's said that only about 1% of kids w/ a gram negative infection come to the hospital looking and acting like Donavynn and recover so fast. That was good to hear. He didn't act sick, his only symptom at the time of admit was a fever. So anyway, Donavynn and I woke up around 8 o'clock and to our surprise Daddy (Dave) was already there, bearing gifts! lol So we proceeded to let Donavynn open up all his presents. As soon as we finished the doctor came in to tell us how his ANC was back up, and he was happy w/ how Donavynn was doing so he would talk to Dr. Shore about going home soon. After that I headed out to the store to get Donavynn the goldfish he had asked for the night before and after learning that they didn't have any nearly had a melt down. When I got back child life had already been in to decorate his room and deliver his cake. They had told Dave that the party would be at 11:30. Just before the party began he received his Erwinia. At 11:30 child life showed up, one person w/ a guitar and a few nurses and the birthday singing began! Next, much to our surprise came more presents from the hospital and then the cake. Donavynn was so happy. He told me last night that he had a great birthday. And that was all that mattered to us. After that Tim and Ann showed up with more presents, and Donavynn was so happy to see his buddy! While he was there they started his Rocephin and after that we just had to wait for Alterna-care to arrive with his antibiotics to take home. So I have to give him 6 days of IV antibiotics at home. We go back to clinic tomorrow for his last Erwinia shot of this cycle, then Thursday he has an LP. Other than that we are just hoping that things go smoothly for awhile now. As you can see by the photos, Donavynn is holding on to his hair still. We are surprised considering the HD Ara-C took it all last time in 2 weeks, but time will tell, he has many more infusions of that over the next 6 months.

Quick Update

2009-05-15T20:59:00.003-05:00

I will post a more in depth update tomorrow but I wanted to let everyone know that we are home - 7 days IV antibiotics at home and that plus his ANC going from 20 to 1540 overnight were by far his best birthday presents. His birthday, in spite of being in the hospital was great and we plan on celebrating for at least the rest of the weekend! Pics to come soon, but we are all exhausted, it has been a long week. Thank you for all of the prayers!!!

Update

2009-05-14T16:43:00.002-05:00

Sorry I haven't posted before now, there hasn't been really any news from the docs and I wanted to post after I heard what organism it is. According to the lab report it is E. Coli, which is what I was thinking, that is pretty common. The upside is he is doing FANTASTIC! Ativan apparently has the opposite affect on him as he was up literally ALL night playing on his DS. But he has eaten a little today, and is unhooked from the IV b/c he is drinking as well. He has been up out of bed playing and enjoying himself and has been fever free since 10 last night. I even got him to take a bath yesterday after he got his blood, which was a good sign. They are going to give him his Erwinia tomorrow instead, which sucks b/c tomorrow is his birthday. Lets hope he doesn't have any problems w/ it. Then he will get the next shot on Sunday so they are expecting us to at least be here until then I'm guessing. Typical treatment for this is 14 days after the first negative culture (if last nights stays negative then we got that) but they will let us do his IV antibiotics at home, however we will have to be here for awhile regardless. But at least he is feeling good. They are going to have a cake for him tomorrow and his Daddy and a friend of his will be coming to visit. I'll post pics when I get a chance. Donavynn wants me to play with him for awhile so I'll update again later. Please keep praying that his culture stays negative, if they can't get a negative one after 48 hrs of treatment they will have to replace his port. :( Oh and BTW his platelets went up on their own. His counts look like they are SLOWLY starting to recover.

Fuck you cancer!!!

2009-05-13T09:48:00.002-05:00

More than 3 years ago we heard 4 words that we never expected... "Your child has cancer". In those three years I have seen cancer take so much away from my son and our entire family. We have taken it in stride and kept our head high, always w/ a positive outlook. Even after his relapse last September. I always tell myself that Donavynn doesn't know the difference so this is all harder on us than it is on him. But as we sit in the hospital 2 days away from his 5th birthday after being told he has an infection w/ gram negative rods, I find myself angry and heartbroken that cancer is now going to take away the fun of his 5th birthday as if it hasn't take enough already! In more than three years cancer has taken away his hair, his appetite, his freedom to play in the sun for very long b/c the chemo makes him super sensitive to the sun and he's allergic to all types of sun screen, countless playdates, countless nights that should have been spent snuggled up in his own bed, countless tears from needles sticks, dressing removals, LP's, BMB's, and surgeries, the opportunity to start kindergarten on time, the ability to just go shopping w/ his mommy, or go out to dinner to celebrate, 1 halloween, his freedom to roughhouse at different times b/c his platelets are low, his energy when his counts are low, and so much more. And that is just what it has taken from him, that doesn't count all that it has taken away from all who love him. I am thankful that we caught this early, the doctors are happy w/ how he is looking and acting. But it surely explains why the GCSF hasn't been working. Monday he had been on it for 3 days and he is usually completely recovered in 3 days, but this time his ANC was 20, w/ no signs of pending count recovery, which made me nervous. Now we know that it wasn't boosting his counts b/c everything being produced was being used to fight this infection. They just drew another CBC b/c his hemoglobin was 8.1 last night, so we are pretty sure he'll be getting a unit of blood today as well. I will try to keep you updated as things progress, please pray that he will continue to stay strong and will be feeling much better by Friday so that at least he can enjoy his birthday, even if we do have to spend it here in the hospital.

This past week

2009-05-12T07:28:00.002-05:00

Our stay in the hospital was a couple days longer than we had expected b/c of fevers and the nausea that came w/ it. But we have been home now for 1 week. He started the Erwinia while in the hospital and had another shot of it yesterday. They also drew counts b/c he had been on GCSF for 3 days. Much to our surprise it hasn't worked yet. Usually 3 days is all he needs, but not this time. Yesterday his ANC was 20! And his platelets were 10, so as you can guess he got a transfusion of platelets yesterday. When we got home his shirt was covered in blood. Apparently the platelets hadn't had time to work yet and when the de-accessed his port he continued to bleed. Scared the life out of me, but a little pressure and he was fine. We got back up for another shot tomorrow and then again on Friday (his 5th birthday) so I'm hoping that his counts will show signs of recovery tomorrow and that he won't need anymore blood products. But considering his hemoglobin was 9, I won't be surprised if he needs blood. I hate to see that this is what we have to look forward to for the next 6 months or so depending on delays in treatment. Shockingly none of this seems to be affecting him. He is happy and bouncy, a little more tired than usual but otherwise good. Which is nice to see. We took a bike ride yesterday once we got his port to stop bleeding. He was a little upset that I wouldn't let him ride his new 2 wheeler but I explained to him that the big wheel was safer w/ his platelets being low. Though he got a transfusion I am not sure how much they helped so I'd rather be safe than sorry. He understood and was happy that I was letting him go. The way I look at is is that he should be able to live as normal a life as possible if we take simple precautions like helmets and elbow and knee pads on a big wheel! lol His counts will keep him out of the public so I don't want him to lose playtime outside. He knows his limits which helps alot. He understands what it means when platelets and counts are low so there isn't an argument if he can't do something. I guess that is pretty much all for now. Life has been good, difficult at time for my little man w/ his nightly injections of GCSF etc but we are all doing well and holding it together. I'll try to post again after clinic tomorrow.

Extended Stay

2009-05-03T19:19:00.005-05:00

So the weekend hasn't gone as planned. For starters we knew there would be fevers but this time with the fevers came the vomit, so much so that today he had some blood in it from getting sick so much. He has also had diarrhea today and the fevers don't want to stay away. We are hoping now that he is done getting the chemo that they won't come back again, but he is currently down to 103 from 104.4. The good news is that inspite of the fever he is feeling pretty good today. I was even able to get him up out of bed to play the Wii for awhile. We were supposed to go home today but b/c of the fevers and vomiting they thought it better to keep him for an extra day. I'm hoping that we'll be able to go home tomorrow. This weekend was a rough one for the family back home too. I haven't updated in so long I forgot that I hadn't filled you all in on the issues w/ the house recently. We started by replacing the kids bathroom, and that was a nightmare as the further we got into the project the more we found that needed to be repaired. After that our plumbing started backing up into the house. Turns out we had tree roots growing into the main drain. So the guys got the equipment needed and tore up our ENTIRE yard a couple weeks ago. We thought that the problem was fixed... we were wrong. So this weekend they decided that perhaps there was also a problem w/ the trap so they tore up 1/2 of our back porch. :( to get at that. That didn't fix it so they had to tear up the yard AGAIN and found more roots further down the pipe that they weren't aware of before. The upside is that it is now fixed. That is just the tip of the iceberg w/ the what we have had to deal w/ w/ the house these last few months. Hopefully we are almost done w/ the home repairs for awhile. We now need to get the new fence up (the old one had to be torn down to get at the piping) and fix the wall in the laundry room that had to be torn apart to get at the piping for the bathroom. So I'm glad that I didn't have to be home this weekend in that mess. However, I find that the longer I am here the more depressed I get. I hate being away from my family. It does help alot when my friends come to visit (Thanks Abbey and Meghan) but w/ the kids and the animals, school and home repairs family hasn't been able to come to visit the last few times we have been here and I think that makes all of this even harder. Well, I need to get back to my books, I have a final in the morning. And then hopefully after that we'll be able to go home. Please keep praying that he feels better throughout the night and the fevers go and stay away!

Reintensification II

2009-05-01T12:38:00.003-05:00

Today we start the long phase that will have us in the hospital ever few weeks for alternating HD Ara-C and HD Methotrexate. I apologize for the complete lack of updates, school has been running me ragged and we are heading into finals week! I can't wait to finish this semester, hopefully that will all go well. The other reason for the lack of blogs is that there hasn't been anything to blog about. Donavynn finished that last round and did well, he had alternating weeks of steroids and no inpatient stays for a month which was nice. Today we are here for the HD Ara-C and hopefully all will go well w/ the Erwinia and we will be home Sunday. I'm settled in to study and he is playing his DS. So all is well here. I'll update as I have time through this stay if there is much to blog about.

Hour 60 Level (3am)

2009-03-16T08:42:00.001-05:00

Was 0.13, so almost there! They are drawing another level at 9 and hopefully we'll be out of here by 10 or 11 we'll have to wait and see. But we are both very anxious to go because it is supposed to be a gorgeous day! Plus I have so much to do at home to get Donavynn's room back in order! lol His room is off of the bathroom so it too has been out of commission during this whole remodel but we are finally at a place where we can give him his room back. I can't wait! So I'll update again soon.

Hour 48 Level

2009-03-15T17:14:00.002-05:00

Is only 0.67, it should be below 0.4 by now so they upped his IV fluids to 150 ml/hr. Next draw is at 3:30 in the morning, lets hope the increase in fluids over the next 12 hours and the dose of leucovorin at 9 will do it's job and we can be out of here upon waking in the morning. Otherwise we'll have to wait for the hour 72 draw at 3:30 tomorrow afternoon. He is eating some chips and had an oreo cookie, now he's just hanging out watching some TV. I think we are just beyond bored at this point. Ok well I'll keep you posted.

Hour 42 Level

2009-03-15T15:57:00.004-05:00

   Riding the whale
   Giant Piano!
   Watching the cars

This morning at hour 42 his level was 0.76, they just drew his hour 48 level. And we should have that in the next hour or so. Donavynn and I had a very fun day today! We have always wanted to check out the playground here but never thought that we really could, because he is usually hooked up to an IV or he's in for a fever etc. Today it looked pretty nice out and so I thought it would be good to get him outside for a little while, even if it was just to sit on the bench for a few minutes. Well he got bored with car watching so I told him we would go check out the playground but I wasn't sure if he'd be able to do anything because of his IV pump. We must have looked crazy walking over there with an IV pole, but I didn't care, we were on a mission for fun! And we found it. Most all the toys on the play ground were IV pole accessible. Here are some pictures of our fun! Upon entering the park there is a giant piano that is part of the side walk, and I thought it was just decoration, turns out there are sensors so when you walk on it it plays the keys! Donavynn loved that and spent a good amount of time on that. After about an hour outside we went to lunch and he actually ate 1/2 of a grilled cheese sandwich and 1/2 a bag of chips. So all around it has been a great day, we are just praying for a miracle at this point and hoping he clears tonight, however, he has never cleared in 48 hours so we are pretty sure we'll just be heading home in the morning instead. But this stay of all of them seems to have been the easiest, perhaps because I'm on spring break and don't have so much else on my mind. Or perhaps because we have had so many fun visitors, Abbey and Meghan, 2 of my friends from school came up Friday, and Abbey and Tim and his family came up yesterday so we haven't been lonely. That accompanied with Skype and being able to see and talk to family and friends has made things easier. Gonna go get some dinner, will update when I have his new level.

Hour 24 Level

2009-03-14T17:34:00.002-05:00

Ok so we are here. Got here yesterday and the floor was packed. So we are back in the bone marrow unit, Donavynn likes it because the room is huge. He has had many visitors during this trip, last night Meghan and Abbey came up and today Dave's friend Tim came up with his wife and son. Donavynn was happy to see them. He has spent much of today sleeping, he usually doesn't eat when we are here which usually means he won't clear as fast as the medicine clears via the kidneys and the bowels. So we were thinking that if we gave him the other antiemetic he might be able to eat, the only downside is that they give Benadryl with the Reglan, and that knocked him out and has kept him that way for most of the day. So he finished his methotrexate at around 3:30 and his level was 50.4. Lower than it started out last time, but still higher than it used to be before. So I'm hoping that it will clear quickly and we will be home Monday. That is about all for now. For any family out there, we downloaded Skype so that we can video conference with people, especially when we are in the hospital, if you would like to be added email me and I'll let you know my screen name. It has helped Donavynn alot to be able to see people while he is up here because he misses everyone terribly.

Updates!

2009-03-01T10:44:00.002-06:00

All has been well here, I apologize for the lack of updates. Things have been so busy here with my school schedule on top of everything else. Donavynn spent a couple nights in the hospital this week as the result of a fever but it turned out to be nothing and we were home Thursday night. Yesterday we got a few inches of snow, the most we've had I think since we've been here. And thanks to that Donavynn got to play in the snow for the 1st time. He was so young when we lived in NY, and usually it was just bitter cold, not much snow. Then he got sick and since we moved out here we have had more ice than snow. He loved it. He is now enjoying a nice warm cup of hot chocolate.

We had to get his counts checked today to see if he can be admitted for his Methotrexate stay tomorrow. So we should know about that later. That is pretty much all that has been going on. I'll update again when there is more to tell.

Levels from Hours 60 & 72 and the plan

2009-02-13T17:01:00.002-06:00

So here we still are, at hour 60 his level was 0.20, at hour 72 it was only 0.14. Because of that they were going to make us wait until it was below 0.08 instead of the normal 0.1 however they decided that we can go home if he makes it to 0.1 if it is just that then he will have to go home on some oral leucovorin, if he is below then he won't need it. But we are stuck here another night unfortunately. Thankfully he doesn't seem too bummed about it. We are in the play room now, I built him a house out of mega blocks and he is playing with it now and all the little figurines they have here. A donkey, two teenage mutant ninja turtles and a guy who looks like he's from star wars lives in the house! lol He said the star wars guy is the prince and it is his castle. That is all the news for now, I'm bummed and tired and we sit here and wait. Oh and last night he got to go to Pet Pals and this morning while I was taking my test he got to go to a Valentines day party. So he is having a ton of fun! Hope all is going well with everyone. Will update again when there is more to tell.

Hour 48 Level

2009-02-12T18:20:00.001-06:00

0.49, so we'll be here till tomorrow, no luck at going home tonight. But it is still coming down and is normal so we are happy. We have had a super fun day. Even jammed out some more in our room. That is about all for now, just wanted to let you know about the latest level.

New Level Hour 42 (I think)

2009-02-12T12:14:00.002-06:00

Ok so my theory was that his level was so high last night because they had to bump it up to 200ml/hr for the last few hours of the infusion so that he would finish it in the prescribed 24 hours, after the infusion is complete they draw the first level which as I mentioned was 98.35. So because he was getting it so fast at the end I think his body just couldn't keep up. And it looks like maybe my theory was right because his level this morning at 10:30 was 0.63!!! We have to be < 0.1

In other news, his next level will be drawn at 4:30 (hr 48) so we'll see how it is then. But pooing helps clear it and apple juice has always been a natural laxative for him so he has had alot of that going on today! lol I'm hoping that with all that bowel activity that maybe, just maybe he could clear tonight. Either way, I'm just happy that it dropped so much! I was worrying last night because with his level being that high that puts him at an increased risk for mouth sores. I gotta go for now, I'll post more after we get his next level. So all in all today has been a much better day!

We're Here, Methotrexate Level After Completing Infusion

2009-02-11T21:47:00.003-06:00

Meghan, Donavynn & Abbey

Nap Time

1st Night working on Mosaic

We arrived yesterday and have had a decent stay so far. Donavynn has been a little more fatigued than usual this time. But he has had fun playing and building his Cars Mosaic clay picture with me. We are hoping to go home Friday but at this time are unsure because the level they drew immediately after completing his infusion was a whopping 98.35 which is higher than it has ever been. They said it is ok, that they aren't concerned unless it was over 150 but I don't like it being that high. And since it is that high we have no idea of how fast he will clear it. The goal is for Friday and the next level won't be drawn until tomorrow morning at 10:30. They said that this is common and that they usually come down pretty quick but that isn't helping to ease my mind at the moment. He won't eat anything, and it has been like pulling teeth to get him to drink. His potassium was a little low tonight so they gave him some of that but we couldn't get him to drink it all. They'll recheck his BNP tomorrow as well so hopefully his potassium will be back in the normal range. My friends from school came for a visit tonight, Abbey and Meghan. Abbey made some awesome chili and corn bread for dinner. It was so nice to have some company and something other than hospital food. Thanks girls!

I'll post again when I have more news.

Didn't Make Counts

2009-01-25T19:28:00.003-06:00

We checked his counts today, because he was supposed to be admitted for his next round of Methotrexate tomorrow. But his ANC is only 400 so we'll be waiting at least another week. The upside is that his hemoglobin came back up on it's own, didn't need any blood this round! And his platelets are 515 so other than being neutropenic he is doing good. He has a lot of energy and is feeling great. He does have pink eye though, so we have an eye ointment we are using, so hopefully that will clear it up soon. We have been really busy, so blogging hasn't been a top priority. So I wanted to log on and at least post a quick update to let everyone know that all is well here. I'll update again when I have more info.

Today's Clinic

2009-01-19T10:19:00.002-06:00

Donavynn just finished his LP, and now he is getting his pentamadine. I'm happy to say that he doesn't need blood this week, so we are really happy about that. His ANC is 790 so he is neutropenic, but his hemoglobin was 10 and his platelets are 126 so all pretty good. So we should be out of here in about an hour. There was a big highlight to my day today. I can't tolerate staying in the room for his LP so Rachael and I decided to go to the cafeteria, much to my surprise they were doing free registration for the National Bone Marrow Registry. I've wanted to do that forever, but haven't had the extra money so this made my day. I am now on the registry and so is Rachael. I think that they should do this more often. I'm sure that the cost prevents others from registering as well. I am a huge advocate for this so if you are able do it! You never know who you could end up helping.

He is really tired now, so he's napping while he finishes his med and then we'll be on our way home. I post again when I have more time and more to say.

This Weeks Clinic Appointment and The Start of The New Semester

2009-01-14T07:49:00.001-06:00

Donavynn had clinic on Monday for his Cytoxan and Etoposide. He did really well as always and we were there for about 3-4 hours. Dr. Shore took a look in his mouth and apparently he has a small sore. I looked at it and it looks like it was already deep in the healing process, because it wasn't open anymore. So that must have happened pretty fast because I check his mouth frequently. And I ask him everyday if his mouth hurts. The good thing is that this one didn't bother him, and is healing quickly so I'm hoping that this is the only one he is going to get because not only can the Methotrexate cause them but so can the meds he just got, especially the Cytoxan. Getting him to eat yogurt has been like pulling teeth recently. His ANC was 1500 so at least he went into this week with good counts, I'm hoping that they won't drop too much but time will tell. Nancy gave me another copy of his complete protocol and it looks like we have a few more weeks of this round before he is back on the steroids again. The good thing is that from now on he won't have to take a full month of steroids it is 1 week on, 1 week off, 1 week on. So that should help a lot. And between this round and that one that should get me through the semester and then we start the Ara-C, Erwinia cycles again over the summer providing he stays pretty close to on schedule. I'm dreading that. The Erwinia scares me because of the potential to react, and it means driving up there every other day. But we'll get through it like we did last time. I learned a few things about radiation this week and how it is going to and may affect him. As many of you may know radiation can be brutal, we are hoping it won't be too bad, because if I am correct he isn't getting very much. I believe he'll be getting 12 gy. Either way, Mercy doesn't do it. He will have to go to Kansas Cancer Center in Overland Park for that. Nancy said that they will likely anesthetize him because he will be at an age where it might scare him and he may not hold as still as he should. They want to make sure that the radiation is going where they want it to. I also learned that many children recieving cranial radiation go through something called somnolence syndrome. It is where they can experience anything from drowsiness up to simply passing out for days and only waking up to eat and use the bathroom. The exact definition is Periods of drowsiness, lethargy, loss of appetite, and irritability in children following radiation therapy treatment to the head. However I have heard that some children have passed out for 4 days after radiation. But I don't know a ton about it yet so I'm still researching. I'm just glad that I learned about it before so that I didn't freak out if it happens. He is my little trooper, he has handled all of this rough chemo so far, I'm sure that he will be able to handle this because I'll be there for him!

Yesterday was my first day of this semester. And I'm so happy that I can finally say I'm officially a senior in college!!! I never thought that would happen! lol Yesterday went well, long, but good. And I'm hoping that though this is going to be a hard semester it will be a good one. Every semester we have to take a calc exam on the 1st day and you have to get 100% before you can go to clinical. I got my 100% so at least it has gotten off on the right foot.

The Weekend Draws To A Close

2009-01-11T22:14:00.002-06:00

I am happy to say that our last weekend before classes start has been a good one. Donavynn has felt great and we went to his friend Jacob's birthday party yesterday. He had a great time bowling and eating cake, or rather the icing on the cake! lol He was so happy to see his friend. And they just love each other so much when Jacob saw him he ran up and gave him a big hug. Today was spent mostly getting ready for the week. He has treatment tomorrow. Cytoxin and Etoposide. So we'll be there for awhile, but at least it isn't inpatient. Then Tuesday is my first day of the semester and things get crazy with 12 hour clinical days and classes in the city it's going to be rough on all of us, but it will pay off in the end. I'm hoping that his counts will still be good, if I remember correctly this time during the last round he needed blood. So hopefully he won't need any blood products and his platelets will stay up. He really hates when he can't play like he wants to because he can get hurt. But he has been feeling really good. He was so happy that Daddy was off this weekend, he (daddy) wasn't feeling well yesterday but he was today so they had so much fun playing together as always. So those are the only updates for now. A good weekend, a happy boy and a busy week ahead. Oh, and please continue to pray for no mouth sores, so far so good, but you never know. Thanks for all of the love and support!

Tired of Being Here!!!

2009-01-08T10:13:00.001-06:00

Ok so we got his levels drawn at 8:30 which was 60 hours, and it is .15 and it is supposed to be < .10 so we are waiting around now for it to drop .05 - seriously! UGH! I don't know when they will be drawing a level again.

The good thing is that he got to see a special showing of Bolt yesterday. Apparently Disney sends them new movies every now and then and that was the one that they got this time. So that was fun. But now I'm ready to go home. I'll post again when we find out what is going on.

8 o'clock level

2009-01-07T21:32:00.001-06:00

His level is now .76. So hopefully he'll clear the rest of that tonight so we can go home tomorrow. He is sleeping for the moment but probably will be up a lot tonight with his IV going at 150 ml/hr. That is all for now.

New Level

2009-01-07T16:48:00.003-06:00

Ok finally got the 2 o'clock results it is 1.17. They want it at least 1 by now so they are upping his hydration a little from 92 ml/hr to 150 ml/hr. They'll check it again at 8 and then again at 8 am. They also did a CBC his ANC is 1260, and the docs okay'd his trip to the birthday party this weekend. So it looks like we'll be here one more night. But first thing in the morning I'll be packing up this room so we can be out of here asap!!!
His other labs
WBC - 2.78
Hgb - 12.4
Hct - 35.9
Platelets - 266

That's all for now. Will update again later.

Waiting To Go Home

2009-01-07T09:04:00.002-06:00

He finished his methotrexate last night and then they drew a methotrexate level. It is currently 19.59 and has to be below 0.1 before we can go home. Hopefully he will clear it quickly like last time. They'll draw another level tonight at 2 and that should give us a better idea of how fast he is clearing. Then I believe they will draw again at 8. I'm going to see if Dr. Shore would mind doing a CBC before we leave as well because Donavynn was invited to a birthday party this weekend and I don't want to take him if he is neutropenic so we'll see. He has been so good as usual. Continuing to amaze the medical staff with how cooperative and happy he is. He has found an animal alphabet puzzle and has been playing with that on and off throughout our entire stay. He loves telling everyone what animals are what.

Last night was a little more restful, because he actually had to be woken to pee. The night before he just had to go like every 1/2 hour. He is shy though so he wouldn't let the aid help him, she had to wake me last night when she woke him! lol He said he was embarrassed. Which I think is cute. It's nice to see he has some modesty!

So that is about all for now. No great news, just happy that he is doing well and praying that he stays free of mouth sores again and clears quickly. If he follows the same path as last time we'll be home tomorrow, if he clears faster we could be home tonight but I'm not counting on that, because that is practically unheard of. I wish I could remember what his initial level was last time, that would give me a better idea. Oh well. I'll post later with his next level.

We Are Here!

2009-01-05T14:28:00.002-06:00

We got into a room much faster this time! And he is getting into hospital mode where he just wants to sit back and relax for a little while. I think he'll be taking a nap today. He was so sad to leave the new dog today. It was so sweet he gave him a hug and a kiss. But it made him feel better to learn that Daddy took him for a ride today. Daddy really loves Cocoa. :) So we are basically just hanging out now. Hopefully all will go well.

On the home front there has been a fun issue for my family to deal with. My car doesn't want to start, thankfully my mom let me bring hers up here. And hopefully Dave can figure out what is wrong with it and be able to fix it for not too much because school starts next week. I tell ya, when it rains it pours. First the bathroom, now this. It is so frustrating. Either way, I'm trying to keep my mind off of all that and enjoy my time with little D. We played Candy Land while we were waiting for our room and Donavynn seemed to really like that game. It was so cute! He was very excited that he beat me. lol

Oh a little funny. As I've mentioned before Derek and Donavynn are pretty inseparable. If they don't see each other every day it is an issue. Derek was sad to learn that Donavynn was going to the hospital and this morning when we were on our way up here he told my mom "Nana, I talked to Donavynn and he said he is done with his pokey and on his way home. He said I have to meet him there." LOL I thought that was so sweet! I'm glad that they love each other so much. They are so much like brothers.

I guess that is all for now. Please pray that he is able to clear the medication quickly so we don't have to be here for too long, and that he doesn't get any nasty mouth sores.

Methotrexate Tomorrow!

2009-01-04T18:53:00.003-06:00

I'm going to try to make this brief as I still have a lot to get done before tomorrow. We had Donavynn's counts checked today and his ANC is 1000! Yeah! I'm so very happy because Cheyenne, Dave and I have all been sick and he has only come down with a cough so we got so lucky this time. His platelets are 344 so he is good to go for the next round of treatment. Which is good. Of course I'm not looking forward to it, I much preferred when all of his treatments were outpatient, but at least he feels well during this treatment. Please pray that he doesn't get any mouth sores this time either. I hate for him to have to endure any more than he already does. As you can see from the picture above New Years was great. He had a ball! And has been so happy because he got to spend some time with friends. It is cold now, but the last two days have been beautiful so we've gotten to get some good quality time outside. We even went to the park the other day with Aden.

My mom with Cocoa

We also have a new addition to the family. I decided that I wanted a dog of my own, because Jake and Penny are the kids dogs. But I didn't really want a puppy because we just don't have that kind of time. And I wanted something small because we don't have room for a big dog. And I wanted a dog who was good with other animals and kids. So I started looking and found this perfect Chihuahua - Cocoa. He is 1 1/2 years old and the most mellow dog! He has been the perfect addition to the family. I think that he will fit in perfectly even with all we have going on. It helps the kids too to have pets. Some people think I'm nuts with all we have going on, but inspite of all of that we still have lots of time to spend with the animals and they are our therapy. We cuddle with them and play with them, and when we are sad they are there. And the nice thing is that when Donavynn ends up in the hospital, if Dave goes with me as well my mom keeps the dogs so they don't have to be boarded. They get to stay with family and they love it over there where they are just as spoiled as they are at home! lol We took Cocoa over tonight to see how he would do while we had dinner and he fit right in. I was amazed, he just made himself at home. So it seems that he adjusts just as well as Penny and Jake. They just love everyone and are happy no matter where they are. So that was the highlight of our week. Donavynn has been loving on him so much. I better get going. Hope all is well with everyone. Please keep sending up prayers that all goes well and remember to keep an eye on the blogspot if you wish to be updated after tonight

Team Donavynn Says Goodbye to 2008!!!

2008-12-29T21:29:00.002-06:00

What a year it has been. With many wonderful highs and some heartbreaking lows. I am anything but sorry to see it go. I only hope that 2009 brings about happier times. 2009 was supposed to be a year of celebrations first Donavynn was supposed to complete treatment in June, and then I was to graduate in December. A year worth looking forward to. Though it won't be quiet that great, I am hopeful that it will still have much more to offer than this one has. This year I learned so much! And as bad as some times were I can't complain entirely because 2008 was the year that I met one of my very best friends and I learned that you don't have to know someone your entire life to feel as if they are a part of your family. And that is exactly how we feel about Rachael and her family. Through every up and every down this year, she was there. She was there the day that Donavynn relapsed and she drove me home, we stopped at her house and had her husband follow her down so that she could get home. She was there throughout the summer helping me plan his benefit that we had believed at the time would get us through until he finished treatment. She was pregnant and had to be exhausted and uncomfortable but she was always willing to help. And she did the same with the most recent fundraiser, even though it was held right at the end of finals week! I was able to be there for the birth of her 3 child, her beautiful little boy Mason. And we helped each other through the ups and downs that come with the second semester of nursing school. After we moved here the hardest part for me was being away from all my friends, and it took a while but I found a true blue friend in her. This may sound corny, but walking through life you meet so few people with hearts as good and kind as her and her family. I have however been blessed enough to meet a few others, like my great friend Abbey. It is nice to see that there is still so much good in the world today.

2008 has brought a lot of heartache to our home as most of you know. The uncertainty of Donavynn's health has been of great concern. His relapse tore us all apart. Though we knew that it was possible, by that stage in treatment I just didn't think it was likely, he was doing so well! It brought back all of those old feelings of resentment and anger toward God. Feelings that I hated to feel, but impossible to shake for awhile none the less. I began to wonder, once again why Dave and I had to fight so hard for him only to have him spend his life fighting as well. He has now spent more than half of his life fighting cancer. I wonder how that is fair. Though I know that life isn't fair, you want to think it would be semi fair when it comes to children. You would like to think that they wouldn't have to endure the pain of sickness, or loss etc. But Donavynn isn't the only one who has been fighting this cancer. We have all been fighting it in our own way. Because when your child has cancer, what that really means is that your family has cancer. Nothing is normal, we were so close to that normal life again, we could just about reach it. The light was so bright at the end of that tunnel and in an instant, it all changed again. My husband and I had to reevaluate everything again, my daughter had to hear the news and try to understand why, she had to try to see what that all meant for her and our lives. She has had to be juggled around and be away from home when Donavynn has to stay in the hospital, whether it is for treatment or illness. Thankfully I have 2 wonderful parents who have been a huge help as well. I don't know what we would do without them. And though she is happy there, it still can't be easy to be away from home, all while wondering what is going on with her brother. For awhile I contemplated putting school on hold again. Though I am glad that I didn't. As hard at it has been, it has been my only normal. My time away. And I need that for my sanity's sake. December proved to have another challenge in store for my daughter and her other side of the family. Her dad was just recently diagnosed with Lymphoma and has a difficult path to take now as well. Cheyenne has had to now try to understand why cancer seems to be all around her. It has however, brought her closer to her dad, or at least that is what it seems like to me. So we have been keeping them in our prayers as well. All of this makes you take a step back and really think about what you want to do with your life. It makes you appreciate the little things even more. For example, Christmas has always been my favorite holiday. This year was especially hard to get into the holiday spirit with all that has happened in the last few months. But I went and rented some holiday movies and sat down with the kids and watched them. I made sure to stick with our yearly traditions, started some new ones, and did what we could for others. This Christmas, inspite of or because of all of the pain in our world right now, was one of the best I've ever had. The kids were happy and full of life, their smiles and laughter lit up the rooms and my heart. I think that we all appreciated the little things even more. For the first time in a long time I felt that Christmas magic.

This year brought new babies to many of my friends! As mentioned above Rachael had Mason, Elisa had Hannah and Mandy had Monika. So through all the pain and disappointments there have many so many good things. So many things to be thankful for, that it makes it hard to feel the pain for too long. After Donavynn's relapse, I blogged about needing a moment to break down and feel the pain. And I did, and sometimes I still do. It is natural, and healthy. But I am thankful that I am able to see through all of that to enjoy the blessings that surround me everyday. I can see through it and see that though Donavynn has a long road ahead, longer than we had planned of fighting, he is strong and a true fighter and has responded very well to treatment. This is good. I can see that though my daughter has had to endure more in her 10 years than some do in an entire lifetime, she is strong and every heartbreak and hurdle molds her into the strong, loving woman that she will someday be. I can see that even when I close myself off from everything around me to take time to throw myself a pity party, I have an amazing husband who will be there for me when I'm ready to talk. Who won't take my silence or my screaming personally. Who knows that every now and then I just need to blow up and then I'll be ok. We have learned so much from each other this year, and even more since this journey as Team Donavynn began. His strength and tolerance through it all is awe inspiring. There are days when I can barely tolerate myself lol So I often wonder how he does it! :) He isn't just an amazing, understanding husband but a terrific father. Every year regardless of what obstacles we get over together we are constantly learning about each other, about how to help each other the best, what we each need at any given time etc. Just when you think you know everything there is to know about someone you learn something else. I really think that I should stay away from blogging when I'm this tired, because a start with a few thoughts and end up with a novel full of ramblings. Either way my point is that I'm not sorry to see 2008 go, and I'll be celebrating to the fullest, screaming the loudest I've ever screamed when we ring in 2009, but even with all the bad. There is always good!!! After every storm the sun always comes out to show us what the rain has brought - new life, and with it hope for a better tomorrow.

Staying Home Again...

2008-12-29T18:15:00.001-06:00

Well it has been a really long day. I didn't get back to sleep until 6 this morning and then I had to take him to get his counts checked. After that we had to hang at my moms because my dad and Dave were fixing the leak. They finally finished and Nancy finally called his ANC is only 425 and it needs to be at least 750 to start the next round of treatment. So we'll have his counts checked again next Wednesday and if all is well he'll be admitted next Thursday. He has been feeling great, very playful and happy. The upside is that we'll get to spend New Years Eve at home with friends. And Dr. Shore said that these delays are expected. I wasn't the least bit surprised because the Cytoxan usually drops the counts hard and they were still 500 last week so I figured that they'd probably drop some more. I don't have all his other counts yet, but his platelets are over 300, his total white count is 2,000ish and his ANC is 425, and those are the most important numbers.

So the upside of the household disaster is that they were able to get the leak fixed. Whoever put the piping in before did a half assed job so it was basically a water bomb waiting to explode! The other good thing is that though it is really wet and nasty there was no sign or smell of mold. So we just now need to get it all dryed out so that none grows and gut that mess as soon as we are financially able. So I am obviously still worried because you never know what you will find the more you tear out, it could be worse than we think it is. But hopefully all is well. I'm just grateful right now that Donavynn is feeling ok. He had a sore throat last night and a cough but he hasn't had any problems today. I'm praying that it stays that way. Ok I'm exhausted and I gotta get some stuff done aroud here so I'll go for now. Thanks for the prayers.

Trouble Sleeping

2008-12-29T04:46:00.000-06:00

It is just after 4 in the morning and I've been lying awake for 45 minutes now. I'm hoping that if I write all this crap down that is going through my head that perhaps I'll be able to squeeze in at least another hour before Donavynn wakes up. Everyday I worry about him. I worry that he could get sick, I worry that, well I can't even write the words because it hurts too bad to think it. And last night I got another reason to worry. We noticed that there is a weak spot in one of our bathrooms, right near the tub. We assumed it was from the floor getting wet after baths, or even the flood we had in there in July after the pipe broke. We also assumed that we would just fix it when we got our tax money and that it would likely be no big deal. Until my dad and Dave started digging around and removed the panel that shows you the plumbing to the tub. There it was discovered that the pipes have been leaking for God only knows how long and the entire floor under the tub is completely rotted. So this isn't going to be a simple easy fix. And my dad said he thinks it is far too wet for mold to grow because mold needs damp not a freaking puddle. But I still worry. Donavynn is extrememly immunosuppressed, what if there is mold? Obviously the problem needs to be fixed and Donavynn and I will have to stay with my parents while it is being done... but I'm still going to worry. I know that worrying doesn't really help anything but I can't help it, its in my nature. I just can't believe this nightmare. So my dad is going to come fix the leaking pipe tomorrow so that that mess can start to dry out and then as soon as we get our tax money we have to gut the bathroom. I'm telling you, if I had had my way we would have rented forever. Owning a home sucks! Last year it was the furnace, now this.

Anyway, I have to take Donavynn to check his counts when we get up to see if he can be admitted tomorrow. But he has been complaining of the same sore throat that Cheyenne and I have had for the last two days. He doesn't have a fever thankfully but his throat is red and irritated and he does have a cough. So tonight I put the vicks pad in the vaporizer and that seems to have helped, he isn't congested or coughing for now. I just hope that it clears up on its own and soon. I wonder what the protocol is for that if there is no fever but there is a sore throat will they go ahead with treatment? I'm eager to see what his counts are. I don't even know how I'm going to make it through the next 2 years. February is going to be marking our third year of this battle and it doesn't get any easier. I was finally to the point where I was feeling good about things when he relapsed. Now his counts are constantly low which alters so much of our lives and makes things even harder than they were before. I just need to sleep but to do that I have to have a clear head. I don't remember the last time that I had a good nights sleep. I wonder if I'll ever know what that feels like again.

On the upside, if you haven't noticed from the pictures, Donavynn's swelling has gone down finally. His belly went down right away but it took him a long time to lose that moonface look the steroids give. And now he is finally starting to look like himself again, only bald. I've finally adjusted to that look again, though I miss his hair. It does help that he likes to be bald. And that he has a little ring of hair around the back of his head like balding men do, like Dr. Shore does! lol And Donavynn will tell anyone who will listen "I look like Dr. Shore!" Which cracks me up, especially when he told the good doctor that himself!

I have spent the last two days cleaning, weeding things out and trying to get organized. And Donavynn was a great help with that. He loves to help and it is so nice that he is currently feeling well enough to do so. I was so excited the other night because I made brocolli to go with dinner and Donavynn loves that so I thought that for once he would join us for dinner - most of the time he doesn't because he only eats when he wants to because his appetite is so poor due to the chemo. And he did sit down, he took two bites and got sick. Which to me is expected, I've been dealing with this a lot so you clean it up and move on. No point fretting about it. But it causes Dave to worry, he has asked a lot if it is ok that he hasn't really been eating. And I just tell him that they are happy if he is drinking and he does eat, just not that much. They keep an eye on his weight etc and will let us know if they are concerned. It just goes to show you, I'm not the only one in this house that is worrying, it's just I seem to worry about the bigger things that can go wrong. A poor appetite has been something he has been dealing with for 3 years now. But it is good to see Dave being more involved in everything. Don't get me wrong he is a great dad, I couldn't ask for a better father for my kids. But for a long time he distanced himself from anything that had to do with the cancer. I think that was his way of coping. Which is fine, we all handle it differently. But it has been much easier on me, and taken a little of the load off of me recently since he has started to become more involved in his treatment and the day to day things that come with it. It has also seemed to make Donavynn happier too. He has really enjoyed the times that Dave has been able to stay with us at the hospital. I must admit that is pretty nice. But sadly he can't do it all the time, because he only has so much time he can take off and still get paid. Still any little bit helps us out a lot. It lifts Donavynn's spirits and gives me a little break every now and then. Well I'm sure by this point I'm rambling and I'm hoping that my mind is cleared enough now to sleep. Good night or good morning, whichever you prefer at this hour. I'll post again when I have his counts.

A Very Merry Christmas!!!

2008-12-25T20:09:00.005-06:00

First let me say Merry Christmas to everyone! It was a wonderful day, I couldn't have asked for more. 3 months ago I never would have been able to picture a Christmas so full of joy, but it went way beyond our expectations. After presents were opened my parents came over with Derek and we opened more presents, then the kids spent the day playing with their many cool toys! We got some great gifts from our Cancer Warriors Christmas Angels. And we were so blessed to have another angel helping our family this year. My 2nd semester clinical instructor sent some gifts for the kids as well and helped to brighten their day as well. I haven't seen a house so crazy with play since I was a kid at Christmas. I think that might be because the older Donavynn gets the more he gets out of Christmas and the more he gets out of his gifts. This was the first year that her really got it, we thought he got it last year but it was no where close to the magic we saw this year. Donavynn started out in his own bed last night, but I woke up when Dave got home from work and found that he had snuck in with me! lol He closed his eyes real quick and wouldn't talk to me right away, afraid I would send him off to his own bed. In the morning Cheyenne asked him if he had seen Santa and he said yes then quickly clammed up and covered his mouth like he wasn't supposed to tell! lol It was so cute!

Ok so let me tell you about our Christmas Eve. We went to Nana and Grumpy's for dinner and then headed home to finish up for the night. After we got home I got the kids all ready for bed and then we baked cookies for Santa.

Then we settled in to read 'Twas The Night Before Christmas and we finished up the night by watching Frosty The Snowman. Then it was off to bed! These little traditions are what we treasure and hold so dear. Donavynn was awake at 6:30 this morning and so that meant that so was the rest of the house! lol He was so excited and this was the first year that he didn't need to stop and finish opening presents later in the day! He got Monster Truck Jam for his DS, which is the only thing he really wanted for Christmas and when he opened it up he said "Monster truck...." then his face lit up and he said "GAME!" He was so upset last weekend when we had the early Christmas shopping trip from Williams-Woody Nissan and the only thing he really wanted us to get him was that game and we didn't get it! So it was nice to see his face light up when he saw that. Cheyenne got her much desired laptop from her Grandmother in Georgia. She has been bugging for one and her Grandmother thought it was time since she is needing it more now for school. And the only nice thing about Vista is the v-chip! lol She also got a new comforter and sheet set for her bed as well as lots of clothes and her very first curling iron, which is a little scary! lol Dave also found that Monster Truck Jam is having a marathon on all day so that is what has been on our tv all day and Donavynn has been loving it! So overall it was a great day and we were so happy to be able to spend it at home. And we are so happy that Donavynn is doing so well and staying so strong through all of this! We are so truly blessed to have the wonderful people in our lives that we do and for his strength throughout the storm!

Merry Christmas Everyone!!! I hope yours was as happy as ours!!!

Checked Counts Early

2008-12-22T18:21:00.001-06:00

I spoke to Nancy earlier today to see if we could check his counts today, that way we would have extra time to plan and pack etc. So we headed over and had them checked this afternoon, then I took Donavynn home to spend time with Daddy while Rachael and I finished up our Christmas shopping. While I was out I hit up blockbuster for Christmas specials because for some reason the shows we usually can't escape this time of year aren't airing around here until Christmas Eve. So anyway Nancy called while I was out and his ANC is 500. It needs to be 750 for him to be admitted for treatment so provided he stays healthy we will be home for Christmas! YEAH! We will go Monday to have his labs checked again and if he makes counts then he will be admitted on Tuesday. The up side is his platelets jumped back up to 190! Which makes me feel so much better. I worry so much when his platelets are low. So I better get going, gonna finish wrapping gifts and watch the Christmas specials with the family. Just wanted to let everyone know that our Christmas should be a good one, at home with the family the way it should be!

Family Update

2008-12-19T22:31:00.005-06:00

I can't believe how fast December is slipping away, how fast the year has slipped away. Though I can't say that I'm sorry to see it go. It hasn't been a great one, something with even numbered years... I'll be more than happy to ring in 2009! With many hopes that things will be better and that Donavynn will stay healthy.

Cheyenne's dad was diagnosed with Burkitt's Lymphoma this past week and so we are sending up prayers for him as well. It's going to be a tough battle but he's strong and we have faith that he can do it!

Donavynn has his first LP since induction yesterday. We were expecting an awful ice storm in the morning so to be safe Donavynn and I went to the city and originally wanted to stay at Ronald McDonald house, however they have an 8 o'clock check in and we wouldn't make it so the social worker told me that the local hotels give a discount to families and so we got a hotel room across from the hospital the night before. But as our luck goes, the storm didn't hit till last night when we were leaving the hospital! lol But either way, Donavynn and I had a great night. Through all of the hardships there is a good thing in all of this, well there are many good things but the one is that Donavynn and I get to spend lots of quality time together, being silly and having fun. He didn't want to leave the hotel, he said "I don't wanna go to the hospital, I wanna stay in this bed, in my pajamas all day!" lol And you would think a 4 year old would be bored out of their mind in a hotel room, but not him, he played hide and seek, played the window sill like a piano, danced in front of the TV, pretended the one pillow was a log etc. He was having a ball! Here are some pictures of our fun stay!

So anyway, his LP went well, but he did end up needing a unit of blood, his hemoglobin was 7.7. His ANC was only 590 and likely will continue to drop (usually drops 7-10 days after Cytoxin). And his platelets were only 65, so that worries me, but I'm hoping that they'll be headed back up soon. Because of him needing blood and the fact that the storm waited for us to be on the road we didn't get home till 8 o'clock last night. But we made it home safe and sound and that is what matters. He is supposed to be admitted Christmas Eve for his next round of HD Methotrexate, but he has to have his counts checked Tuesday and if his ANC isn't 750 or above he can't be admitted. Which normally would suck because it would mean another delay but this time I wouldn't be overly upset as being in the hospital for Christmas will kinda suck. But we're prepared for it and it will be a great Christmas no matter where we spend it, because we will all be together! Here are some more pics...
This is Donavynn after his LP, Elizabeth from Child Life was reading to him during the procedure because I can't bear to stay in with him the one and only time I did was the day of his relapse so I won't be doing that again!

Child Life had a wagon full of presents and this Laughing Snoopy was one of the ones Donavynn got! He loves him!

On another note, school is over for the semester, I go back on January 13th. And I got a 3.81 GPA for the semester so as Rachael would say "Hooty Who!" I made Dean's List again!!! And that is about all for our family news. At least all I can think of right now when I'm half asleep. I hope you all have a very Merry Christmas and I'll update again when I find out where we'll be spending our holiday. Hope you enjoyed the pics!

Sorry For The Lack Of Updates

2008-12-13T08:38:00.000-06:00

Well it is quiet for the moment so I figured I would post an update since it has been awhile and things are kinda crazy. As I am typing this my family and closest friend are working Donavynn's Pancake Breakfast Benefit. And I am home with Donavynn, Derek and Baby Mason. Donavynn is neutropenic so the big crowd thing wouldn't be a good idea. He started week 2 of this round of treatment with the Cytoxin and Etoposide and he will have his LP on Thursday. And things are good for now. I forgot to mention too, at least I can't remember if I did mention it before. Donavynn got "a-gaged" lol I've told you all about "Lovey" his favorite nurse, well last month he asked her to marry him and even gave her a ring! lol

This week has been a rough one for our family. I can't go into details because I don't have permission for that. But someone very close has just recieved a diagnosis that is going to require the power of prayer.

But other than that things are ok for now. Donavynn is happy as usual and very active. I finished this semester of school, thankfully. I thought it would never end. And it looks like I will likely be making Dean's list again. So that made me happy. I am going to do my best to enjoy the break. Though I know it won't be nearly long enough.

I guess that is all for now, have a great weekend!

New Month, New Round Of Treatment

2008-12-05T19:04:00.003-06:00

So we were admitted yesterday. We sat in the clinic from 9am to 7:30pm before we were finally able to get into our room. Apparently they had some really late discharges. Anyway he finished the HD Methotrexate at 6 tonight (it runs over 24 hours) And all last night as well as from now until we leave he'll have to have his urine checked and they want him to go at least every 2 hours. The methotrexate is eliminated through the kidneys so if he doesn't go the levels will build up in his body and can cause burns in his bladder etc. Very scary. But he will start the leucovorin tomorrow which helps the body eliminate it as well. So hopefully we'll be out of here on Sunday, but time will tell. We'll know more when he has his next methotrexate level drawn, that will tell us how fast he is eliminating it.

He has been feeling really good. Playing his DS, riding his scooter up and down the hall and talking up a storm with all the nurses. It is really nice to see him feeling so well during a hospital stay. There really isn't a whole lot else to tell. I have finals on Tuesday and Wednesday and then I'm off until January 12th which will be nice, but it is pretty likely from what I'm being told that much of that will be spent here with low counts. Hopefully they're wrong, but only time will tell. Either way, I'm just happy to be that much closer to graduation. I can't believe I've just about gotten through the semester that I didn't think was possible because he relapsed right after it started. It went fast. I'm praying that the next year goes just as fast with school and that he continues to kick cancer right in the ass. That is what he tells me, "I'm kicking those bad cells in the pants!" lol He just shows me more and more everyday how strong and brave he is. Sometimes I really wish that I had his strength and his spunk! He just lets everything roll of his back, he is cooperative and kind and just so stinking happy all the time! lol I love it! I know that that positive attitude is going to help him out so much through all of this.

Ok well, I apologize but my mind hasn't been all there lately. I haven't been blogging like I usually do. It's just been so crazy and I've been feeling so drained. Hopefully with the break from school that will get better. Please continue to pray that Donavynn stays healthy, and doesn't get any of those nasty mouth sores. Thanks for the love and support.

BTW the benefit is the 13th. Starbucks has donated coffee etc, Bings donated the pancake mix, and everything fell into place very fast. It should be a great Breakfast with Santa!!! If you would like to attend and need further information give me a call. And thank you Rachael so much for all of your help and support in this difficult time.

Feeling A Little More Awake Today...

2008-11-28T19:07:00.000-06:00

Donavynn is doing great! I can't even begin to express how happy this makes me. Every day here is a struggle in some way or another, whether it is that he isn't feeling well, or my brain is going places that I wish it wouldn't with worry. I can't imagine my life without him. He fills every single day with joy, even when he is acting like a typical 4 year old. Which by the way is incredibly hard because he never got an attitude before, and is now begining to test the waters a little more, but even so, I'd rather have that than what we were dealing with throughout October. He lightens my world and the love that he has for his sister and she for him makes it even better. Of course they fight, like brothers and sisters do. And she doesn't listen like she should, like most 10 year old girls. But I have two amazing, loving children and my life would be so empty without them. With Thanksgiving over I have found myself searching to see what I am really grateful for, and I would have to say that the #1 thing is my family. All of it, from my mom and dad to my husband and children.

You would never know that he is neutropenic because currently he and his sister are racing around the house. And earlier he was racing on his smart cycle and going so fast! His energy amazes me because I have so little right now. I have been drained emotionally and that takes its toll everywhere. I wish I could bottle some of his energy. It makes me so happy to see him like this because it shows just how strong he really is. I admire his strength. I have seen such strength in these kids, both on here and in the hospital. You know that much of the time they don't feel good or are in pain and yet they storm the halls of the hospital with the bikes and tractors they ride, they fill the playroom doing crafts or playing games and they laugh! Through the pain and the sadness that is cancer they laugh. I think that often times we the parents are the ones that struggle with this the most, even though we aren't the ones feeling the pain, we have a harder time with all of it. Often times we have a hard time being normal because our brains are going over all the possibilities and the kids are for the most part oblivious. Donavynn told me the other day when I told him that he had to wash his hands or he would get sick "I am sick already!" He doesn't understand that that is a different kind of sick. Much like his friend at school the other day didn't understand. For this I am also grateful. His laughter washes away the fears, at least for a little while. It brightens my day and gives me hope. Know that though I haven't had time to talk to many of you, I haven't forgotten about you or your thoughtful words and prayers. I appreciate everything you all do from sending up prayers to checking up on us. Your support means the world to us.

Didn't Make Counts

2008-11-27T16:55:00.002-06:00

So sorry for the lack of updates, but I am still experiencing some computer issues, and it has been pretty crazy here. Donavynn just got his last Erwinia shot for awhile on Monday, so we were up in the city just about every other day since we got out of the hospital. Donavynn has been doing really good. He has been as active as ever and even went to visit his friends in school this week. His friend Jacob was very sad that he couldn't stay. But hopefully they will be able to have a play date soon when his counts are good again and we aren't in the hospital. He was supposed to start his HD Methotrexate yesterday but we got all the way up there and he didn't make counts. The good thing is that we get an extra week at home. I'm trying to see the upside. The only bad thing is that it delays everything and now if there aren't anymore in the next few weeks he'll have to spend Christmas in the hospital instead of Thanksgiving. But we'll see what happens. Either way, I know that he'll have fun. We did our Thanksgiving on Monday, since we thought we were going to be at Mercy today, so today we just had some lasagna. But at least we were all together. Donavynn's grandparents from NY have been in town this week. And it was the first holiday that both my and Dave's family were together. It was really nice.

I even got a little break last weekend. My dad babysat so that my mom, Rachael and I could go see Twilight. Boy, was that well worth the wait! I loved getting out of the house for awhile and not having to worry and we all loved the movie, after going crazy over the books. I'm telling you, it is an obsession! lol

So it seems that at least for now, things have settled down here for awhile. We are praying that it stays that way, but are thankful for everyday that it is. I'm just about done with school for the semester so that will help with the stress level for a little while as well. Then it is just one more year! It seems like it is so far away, but I know that it will just zip on by. Just as this year has. I can't believe that Donavynn is almost 5, and that Cheyenne is almost 11. We have had a rough year, but are so thankful for all the positives that were mixed in with the bumps. So please continue to pray that all goes well. And that he'll make counts next week, as well as that he won't develop any mouth sores from the Methotrexate. Many children do get them, and they are a concern because the mouth is full of bacteria. I am sorry if this is disorganized. It has been a long week and I'm really tired. I will try to update again when I have some free time.

What A Difference Being Home Makes!

2008-11-13T18:54:00.002-06:00

Today has just been great. Donavynn danced for the first time in probably two months, was singing, playing the Wii and he even jumped. He ate a little today too, a package of poptarts and a yogurt. It isn't much but it is something. And he even chose the yogurt over fries, so I was pretty impressed with that. He isn't really looking forward to going back up tomorrow and honestly neither am I. But then we'll have the weekend off, as long as all goes well. He has only had one accident today which is pretty impressive, I wasn't sure how he would do. And his bottom is continuing to heal very well. One day at a time, we are just so happy to see him being his normal, happy self. That is about all there is going on right now. Great day with the family, still pretty drained. But boy did we all sleep well last night. To be home, all of us together, sleeping in our own beds! I'll try to update again tomorrow after we get home from clinic. Have a great night.

We're Home

2008-11-12T19:58:00.002-06:00

This is going to be short and sweet. We are home. And everyone is doing well. The house has been complete chaos since we got home, which is why I am posting so late. He is beyond happy to be home as am I. I had a dream last night about sleeping in my own bed! lol Which is where I'll be headed soon. I have been up since 4:30 and have to be up with him every three hours for his eye drops. So that is really all for tonight. We are home and happy. Please pray that he stays healthy and continues to do well.

Heading to Bed

2008-11-11T21:45:00.003-06:00

Today was a good day, all went well with the HD Ara-C. He even got to go down to play Bingo, he won a matchbox car and a Toss-A-Cross Game. That made his night, and he is now looking forward to future stays that don't involve fevers, that are only for treatment. Thursday nights are Pet Pals and that is his favorite, so perhaps in the future he'll get to go to that. He spent most of the day resting. The chemo takes a lot out of him. And he was on IV fluids most of the day so he didn't get to ride his bike. I took his bike down to the car and then they tell me that he doesn't need the fluids anymore! lol I can't win. Well I'm heading to bed, we have a long day tomorrow. We come back up Friday for his next Erwinia shot. Keep praying that all continues to go well. I'll try to update tomorrow evening sometime if I'm still awake enough to type coherently. lol Have a great night!

AM Update

2008-11-11T08:38:00.002-06:00

Things are looking good! His blasts are gone again, which is awesome. And he started his HD Ara-C yesterday afternoon at 3, and so far he hasn't gotten one of those dreaded Ara-C fevers. Lets hope it stays that way. They also premedicate with Zofran, and wouldn't you know after they did that he ate! He ate 2 pop tarts and most of a grilled cheese sandwhich! Perhaps he is feeling nauseas a lot and that is why he doesn't want to eat. He is still sleeping right now, but not for much longer, they have to come in and put in his eye drops soon. And he seems to be getting better with those.

Last night we went down to do a little project in the teen room. They had cupcakes, pretzel sticks and a fruit roll up and he made a tepee out of it. I have pictures that I'll upload when I have time. He also enjoyed coloring with a couple other kids on the big wipe off board they have down there. He was so happy to leave the floor!

His bottom is healing very well, it shouldn't be much longer now before it is all healed. He got his last dose of IV antibiotics yesterday. And it still looks great.

His ANC is 2,230 today, which is up from the 1800 it was yesterday. So that is good. Hopefully it will stay up for a little bit longer and let his bottom finish healing. I spoke to the docs more yesterday about the G-CSF and when to start it and we aren't starting it Thursday, we are going to wait until his counts drop. Because the only reason we had this much of an issue this time was because he had C-diff going into everything, and all that lead to the breakdown of his bottom leaving it open for that infection to get in. So hopefully we won't have as many issues this time, we can only hope. I'm sure daddy has been cleaning up at home, doing the weekly top to bottom disinfection. And hopefully that will help. Hopefully now that he has been feeling better he won't be so lethargic either, which will also help. The more active he is the better.

So the plan is still to go home tomorrow and I think we are both equally excited! The staff here is great and all but we are ready to get out of here. Donavynn told Dave the other day that he can't wait to go out those doors and tell all the nurses "I'm OUTTA here!" lol I can't even tell you how great it is to have my spunky little man back. He has been amazing everyone on the floor with his bike riding skills. He even found a little friend to race yesterday! They had a great time, until Donavynn had to get hooked up to his chemo. They are having Bingo in the teen room tonight, and if he is still fever free and feeling up to it we might go down. I think he would like that. The only bad thing is that he has to leave his mask on when he leaves the floor, because you never know if someone is going to sneeze! Hopefully he'll be feeling good.

Those are it for updates right now. Things are looking good all the way around. Please keep praying that he stays healthy and we are able to stay home more this time around. And please also pray that he handles the Erwinia well, with no reactions. Starting those again, every other day always has that risk. And he really needs to have all the chemo's on the protocol so lets keep praying that his body handles it all well.

Thanks for the love, support and prayers!

Pictures From the Last Few Days, and Today's Update

2008-11-10T13:37:00.004-06:00

Playing with Daddy

Making his about me collage

His gingerbread house he made yesterday, complete with
"autumn leaves" on the ground

Making his gingerbread house

(below is from Saturday)

Let's Race!

Today's CBC showed 2% blasts, but the doctors weren't concerned. They said that the machine probably missed them yesterday. They said it is more likely that that happened than that they were gone and rose up again. But they said they'll continue to watch them.

Donavynn has been doing really well. He's been out playing and riding his bike for a couple hours everyday since Saturday. And he hasn't been on IV fluids since then either. He is back on them now because they want to get him good and hydrated before they begin his Ara-C this afternoon. He has been so happy and feeling so good that I am sad that he has to start that up again today. I'm just hoping that maybe he won't get the fevers that the Ara-C is so famous for. He has some peeling on his hands and legs now, which they say is another common side effect of the Ara-C. Fun times!

They removed his last remaining stitch today. So hopefully that will continue to get better, and will be 100% healed very soon. He's sad to be stuck in his room right now. The only thing he wants to do is race and he can't do that with the pole, and besides the playroom is closed until 2:30 because they are having school for the older kids. Overall it has been a good couple of days, I only wish we could have been able to enjoy the at home. We are all so happy to have our happy go lucky Donavynn back!

On another note, my friend Rachael, who helped with the August benefit is in the process of organizing another one, because as I mentioned this protocol calls for many trips to the hospital and many stays for treatment, not to mention the unplanned stays due to fever. She is doing a "Breakfast with Santa" 2 weekends before Christmas. I'm sure it will be great fun. I wish that we could attend but I'm not counting on it. He starts the next phase of intense treatment at the end of this month or beginning of next month, depending on counts. But I am so thankful to have such a wonderful, thoughtful friend. Because God knows we don't have the time to do anything like that right now. I'll keep everyone updated on the benefit so if any of our local friends wish to attend with their children they can.

Well I'm going to sign off for now, I'm sure there is some homework that I could be doing. Please keep praying that he continues to do well, that the chemo doesn't make him feel too bad, or damage any part of his little body, and that he can stay healthy this time around so that we can enjoy some more time at home as a family.

Today's Labs

2008-11-09T08:46:00.006-06:00

I don't have a whole lot to say today, yesterday was a great day and I'm sure today will be as well. We are going to enjoy being out of the room today because the Ara-C can cause fevers and he starts that tomorrow. And as you know fevers = staying in the room. I am simply posting this morning because I got his labs and THE BLASTS ARE GONE!!! So that made my day! I had to look a couple times because they only list them if they are there, not like other counts where they will write for example % Mono - 0 or something. Anyway, that was the highlight of my day so far. He is getting his antibiotics now so I'm going to jump in the shower, when they are done we are going to enjoy the day out playing and riding his bike. I'll update later when there is more to tell.

Our Donavynn is Really Back!!!

2008-11-08T16:22:00.004-06:00

You better hurry up! Nana's gonna get you!

Here she comes!

Today daddy went home, he has to get back to work. And hopefully we'll be joining him on Wednesday. My mom brought Donavynn's bike with her when she came to get Dave and that got Donavynn out of the room and even more active than he has been! He road his bike up and down the halls for probably 2 hours! I'll post some more pics later but here are the ones I got from my phone. He is doing great and if it wasn't for chemo on Monday we'd probably be out of here by now. We are just hoping that he stays this way after this next round of chemo. I'm going to talk to the doctor again about when to start the G-CSF, because his counts won't tank for about 5 days or so, so maybe we'll wait a little longer, because I don't want him on it any longer than he has to be. Please keep praying that he continues to do better!

The Current Plan

2008-11-07T20:50:00.003-06:00

Dr. Shore visited again today and I was able to talk to him about the G-CSF schedule. He said he is fine with starting it sooner, he said that they don't usually give that with a chemotherapy drug but if it might help than we can give it a shot. I'm just not sure how it will work as far as with counts... do we start it and then stop when they are ok, then start again when the Ara-C drops them? I'll have to look into that further I think.

They are very pleased with his progress. He has been off of IV fluids most of the day and has been drinking really good. He's picked at food here and there but nothing really worth talking too much about. However his bottom seems to be doing very well. So the plan as of right now is to shoot for a Wednesday discharge. They will likely start his next round of HD Ara-C on Monday provided he makes counts and if he does than we'll be going home on Wednesday. But we'll see, none of that is set in stone.

Donavynn's friend Kaeden is in the hospital now too, with a blood infection. :( Maybe you could say some prayers for them too.

That is about all for tonight, it has been a good day and he keeps improving. Thanks for all the prayers.

Congratulations Elisa!

2008-11-07T09:23:00.002-06:00

Hannah

Wow, this morning turned out to be better than I thought. I just got a call from one of my best friends back in NY. She had her baby girl this morning. 7lbs 5oz 20 inches long born at 8:30 EST. She looks just like her mommy! I miss you girl, wish I could have been there! Congratulations to you both! Please keep sending me lots and lots of pictures! And call when you feel up to talking.

A Much Better Morning!!!

2008-11-07T07:43:00.002-06:00

So the last few days it has been like pulling teeth to get a copy of his labs. Which is nerve racking, because I know that if they don't bring them right in, if they hem and haw about it than there is a problem. The problem has always been that there are still blasts. I have tried to explain to them that I am aware of this, and all it does by beating around the bush is make me more nervous. Apparently they finally got it because when I woke up this morning a copy of his labs were sitting on my laptop! And guess what! They dropped again, and this time by almost 400 instead of the 100 they have been dropping. So I feel much better! Now they are at 6%. People must have been praying along with me last night, thank you!

Nancy his APN (advanced practice nurse or nurse practitioner) stopped up last night because I needed someone to calm my nerves. I spoke to her about how another patient on the same protocol is getting the G-CSF after the first dose of Erwinia instead of the last and how that seems to have helped him spend less time in the hospital, so I asked her to talk to Dr. Shore and see what he thinks. If they have their reasons as to why it is after the last dose than ok, I just didn't feel that it could hurt to ask. She also took a peek at his bottom and she said that it looks pretty good. It looks like there is some granulation tissue there which means it is healing good.

The doctor was just in and she explained that they want him on at least 10 days of IV antibiotics (we are on day 8) and then they will see how his bottom is looking and decide if he needs another 4 days. That is our time line at this moment for going home. It is still pretty vague but better than before. I'll update more later. I just wanted to share the good morning that we've had with all of you!

We Hit The One Week Marker

2008-11-06T15:42:00.003-06:00

Today has been pretty good overall. Still worried about his blood work. The blast count is dropping, and they said that they still aren't worried. But it isn't dropping as fast as I would like it to. They said if he still has blasts next week then they will do a bone marrow biopsy. So please pray that that isn't necessary. Every morning when I ask for the labs I get sick to my stomach. I'm so worried.

He got up and out of the room again today. Peddled the tractor around the halls, made an "about me" collage, and played catch with me in the halls. He is napping now. I wish we could get one of the bikes like he has at home. That would be easier for him to peddle. Maybe I'll have to scrub one of those up and keep it just as his hospital bike. Seen as how we will be spending more time here it seems.

He just had his bipap therapy, which puts him to sleep every time. So he is taking a nice nap now, and then we'll probably go back to the play room and have some more fun!
So please keep the prayers coming, we still have no estimated time of discharge. I'll update again a little later if I have time.

***The information below is for family, I do NOT believe in soliciting help from strangers over the internet***

Hello everyone, I am wondering if any of you have any fund raising ideas. The money from the fund raiser we held in August is almost gone with the long hospital stays and the multiple trips up here. We need to organize something that isn't going to take a lot of time, as we don't obviously have that. But things aren't going to get better for awhile, so we are definitely going to need some help, as hard as that is for us to admit or ask. So if anyone has any ideas please let me know. And if any of our family is interested in making a donation you can click the donate button above, it will put a deposit directly into our paypal account. Thank you so much!!!

Another Pic From Last Night

2008-11-06T09:46:00.001-06:00

He LOVES this racetrack!

Today's Update

2008-11-05T18:28:00.003-06:00

Walking with daddy

Washing my watermelon! lol

He just kept smiling at me forever when I got back! lol

As you can see by the pictures, he has been fever free for more than 24 hours so he was able to leave his room! We got him up and let him play in the play room then took him for a walk up the halls. But I think we may have over done it a bit because all that walking got him coughing, which is good, it gets all that stuff moving. But they think he may have pulled a muscle in his chest because it hurts him to cough. His chest x-ray has shown great improvement though, so we'll just keep getting him moving. Right now he is doing some great lung expansion - laughing, hysterically to Kangaroo Jack! I forgot that the kangaroo gets hit, and when he saw that he started balling! So I had to explain to him that he was ok, and once he saw that he was he started laughing and hasn't stopped much since! lol

His bottom looks better, redness wise. But 2 of his stitches came out. So they don't want to put new ones in, they just want us to continue to irrigate it and keep the ointment on it. Hopefully now that his counts are back up it will heal quicker.

He's on O2 per venturi mask now when he sleeps, because his sats were dropping into the 80's again. They feel it is likely just from him being immobile. So hopefully the more we get him moving the better that will get.

They aren't starting chemo tomorrow as planned. They want him to get over this infection and let his bottom heal. And we don't know yet, when we'll be going home. That will depend on his bottom. He's only had 2 stools so far today, so that is surely helping. And I'm so proud of daddy! He did so well taking care of him. He was concerned about cleaning his bottom. He wasn't sure if he could do it right, and didn't want to hurt him. So I wasn't sure if he would do it or have the aide's do it. But he did all his care while I was gone, and he did a great job! His bottom looks even better than it did yesterday. So he is really proud of himself too! I think this has been a good learning experience for him. Usually I do all of Donavynn's care, just because I'm usually the one there, and it is easier for me to take time off of school usually, that it is for him to take time of off work. So this is all pretty new to him. Daddy = fun, usually. But this was really good for both of us. He learned some, and had some good quality time with Donavynn, and I learned to give up a little control (lol) and take a break. As hard as it was for me, it was nice to sleep in my own bed last night, and have time to get the house clean so that it is ready when we do get to go home. But (I never thought I'd say this) I'm glad to be back in the hospital! lol I missed him so much!!!

Oh yeah, labs! His white count was up to 10,002, ANC - 4,710, Platelets - 162 and the blasts were down to 8%! Yeah! So we'll keep watching them and hope that they continue to go down. So today has been a good day, please keep praying that he continues to get better and that his wound on his bottom heals quickly!!! Gotta go spend some time with my boy, I'll update again when I have more to tell.

Made For Donavynn by a MySpace Friend!

2008-11-04T19:50:00.001-06:00

Sorry about the lack of updates, update

2008-11-04T14:22:00.002-06:00

Hi everyone, sorry I haven't posted yet today. I left this morning for school and prior to that I was freaking out about leaving and had a little moment when I freaked out about his blood work. His blast count was up to 11%, scary! So the doctor came in and spoke to me and said that all of his other counts are good. His total white count is over 8000 and his ANC is 3500, so it more than tripled over night. They still think it is related to the G-CSF, which they are now stopping because his ANC is high enough. And they expect them to start going back down tomorrow. They said some people just recover really fast, which he did. Many kids are on it for more than a week before they go up. And when they recover that fast, that is likely to happen. She said they had one kid who did the same thing last week, his blast count was 25% and once he went off the G-CSF it was fine.

He also has a little puss drainage from his wound on his bottom, they will keep an eye on that and think it is likely just because he has a white count now, which you need to make puss.

He did get a fever again last night, but it was a different kind of fever. With the med he would chill hard before and then it would take hours to come down, it even got up to 105. Last night he didn't chill at all, said he felt hot and it was high so they gave him Tylenol and it went down really fast.

He is having a good day with daddy. His appetite has picked up and is doing well. I'll update more later if I get a chance, I have paperwork to do for school. I just wanted to let everyone know that he is doing good.

Evening Update

2008-11-03T19:27:00.002-06:00

We had another chest X-ray done tonight to see if there has been any improvement from the breathing treatments, and there has been. They look better than last night, and they are starting to move his secretions so he is coughing them up now. His O2 sats are staying in the high 90's as well, at least they have been all day when he's been awake. The night may bring another story, time will tell. The wound biopsy came back showing the same as the culture, no fungal! YEAH! Only the staph, which they said according to the sensitivity is not resistant! Which is also good. He was up in the chair for 5 hours today! I couldn't get him to walk around the room, but the fact that he was out of bed was an improvement. If he remains fever free (lets keep praying!) then he'll be able to leave his room tomorrow afternoon. He is hoping for that. Tomorrow night, if all continues to go well, will be the first night that he will spend in the hospital with out me. Daddy will be here of course, but that isn't the same, so I'm a nervous wreck! And so sad. But if he is doing well, then there is no reason for me to miss clinical. The semester is almost over, gotta keep plugging along. But even though I know that, my heart is broken to have to leave him here and not be here if he needs me. Our wonderful nurse that we had last night and have again tonight is going to think of many reassuring reasons why I should go, and why everything will be ok for one night without me here. lol He is watching Finding Nemo now. And he's been chatty all night. He also has not hesitated to inform us of what he likes and doesn't like. And if we are doing something wrong. This is what I like to see, my happy but opinionated little boy!

They also did a KUB (abdominal X-ray - stands for kidneys, ureters and bladder) and that is normal. They did that because the resident was pushing on his abdomen earlier and he was saying he was in pain. He ended up vomiting shortly after which was probably the cause for the discomfort, but they wanted to be sure. They are still trying to make sure that they aren't missing anything.

I'm not sure if I mentioned it in an earlier post or not, but the infectious disease doc came in and took a look at his bottom, which is looking much better, and he now has a small tear beside the stitches that we need to keep an eye on. But hopefully that won't become anything major. The rest of his bottom is much better, not so red and not really raw at all. He is my brave little trooper and I am so proud of him!!!

I think that is about it for tonight. I'll probably post another blog in the am before I leave. Please continue to pray for him and say a prayer for me that I can have the strength to do what I have to do, and be away for a night. And that he does well without me here. Please also pray that we did indeed find the cause of the fever and he doesn't spike tonight. He is really looking forward to being able to leave his room, which can only happen when he's been fever free for 24 hours. Sorry if I'm rambling or repeating myself, I'm exhausted. Hope everyone has a great night!

Today's Photo's

2008-11-03T14:56:00.003-06:00

He siad "Take a picture of me bald!" lol

He's out of bed, smiling and wearing his hat!

They gave him a costume on Halloween that he didn't get to wear, so he wanted to try on the
Spider-Man mask!

Sleeping with his O2

Bipap therapy

Labs for Today

2008-11-03T11:25:00.002-06:00

The doctors haven't been in yet, but the nurse just stopped. She said they are starting him on a 5 day cycle of Zythromax for possible pneumonia, and they are going to take him down for another chest X-ray today to see if there has been any improvement since starting the bipap treatments. He just finished his antifungal and is chilling again, so I really wish they would take him off of that! I'm really starting to think that the nurse was right!

Anyway, he still has 4% blasts but Dr. Shore stopped in, he said that isn't concerning because his counts are recovering and he's on the neupogen. (GCSF) His total white count was 2,740! Up from 500 yesterday! And his ANC is 1069, up from 40 yesterday (don't remember if I put that in the other blog or not) so the med is working well, and fast. His platelets are 134 today, which is down a touch from yesterday but they fluctuate throughout the day so I'm not worried about that. Last time we were here he had a CBC done twice and once they were 77 and later they were 90 so that is no big deal. His hemoglobin is 11.2 which is low, but not bad. He won't be considered anemic even until it is below 10.
---------------------------------------------------------------------------
Ok doctors just left. They are going to check the biopsy and remove the antifungal, even if he has a fungal infection then they will just switch to a different one. Because he now has a fever, and with the fever came the puking.

On the upside, he's off of contact precautions now because he went for so long with out pooing, and when he just went it wasn't liquid anymore.

We are waiting on the phenergan to help with the nausea, and hopefully she'll be in here with the Tylenol then too. These fevers are vile, they go so high so fast. So I hope we have found the cause and they will stop! I'll update again after we know more. The doctors didn't have much info at this point, other than that they think that is the cause of the fevers as well, and we are going to do another chest X-ray, they are also switching one of his antibiotics, just to be safe. But his blood cultures are still negative.

Updates for Last Night

2008-11-03T07:25:00.003-06:00

I'm waiting for them to bring me a copy of his labs for today. But I wanted to post an update. He hasn't had a BM in around 13 hours or more! I can't tell you how happy that makes me!!! Last night he had an odd snore, was breathing kind of fast, and his O2 sats were in the 80's, so they put him on O2 via simple face mask, and hooked him to a monitor to watch his O2. They also took him for a chest x-ray at 11:30 or midnight last night. We are still waiting for the "official" report on that. Apparently they were still a little concerned because I woke up to them bringing the fun bipap in the room, they did one treatment with that so far. They said he can be off the O2 while he is awake and we'll watch and see what he does. Not sure what that is all about. He sounds a little congested (nasal congestion) and had a big mucousy cough while we were down in X-ray. After he coughed he sounded better for awhile. He's on Claritin for his allergies, but I know that doesn't cover everything. I guess time will tell. They said even if the chest X-ray shows something, treatment likely won't change because he is on antibiotics and antifungals and should be covered all the way around. Part of me wonders if some of this could be viral, because his monocytes were elevated yesterday, but that could just be because his counts are recovering so everything is a little off. As far as our theory goes, no news on what the doctors think yet. He did spike again last night while the med was running. But the nurse passed her theory along, chances are they aren't going to stop that med until his skin biopsy results come back anyway. So we'll continue to watch and see. I'm telling you it can be so frustrating. The advances that have been made in medicine and still so much time is spent playing the "wait and see" game. I'm really hating being on the patient side of medicine! lol The doctors will be in in a few hours I'm sure and I can post another update then, if not before when I get the labs, if there is anything to report there.

Possible Reason for the Fever?

2008-11-02T22:03:00.002-06:00

I spoke with the nurse a little while ago and she had a theory. She happened to look at his records and his fevers usually occur a couple hours after he finishes the variconazole (the antifungal medication - given over 2 hours). She thinks that it is possible that the drug is causing the fevers. I looked it up in my handy drug book, that I'm so glad I brought with me this time, and fever is a possible side effect. It isn't a common side effect, but it is a possible one. So that is a current thought. I'll let you know if it happens again after the med. I'm telling you, we got a very observant nurse! She is one of my fav's, sadly she is a traveler! :( But having been so, she has seen a lot (she only does pediatric hem/onc) so she has a little more knowledge then some others may. So anyway, I'll keep you posted on this little theory. Heading to bed soon, so I probably won't post again tonight. I hope everyone likes the changes I've made to the page. Let me know if anyone has any trouble reading the fonts due to their color. Have a great night, and thanks so much for the prayers!

The Video's of the Haircut!!!

2008-11-02T18:31:00.002-06:00

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This was after I cut it down so it would be easier to shave.

I'm having issues with google video now, so these 2 will have to do, I have a 3rd with the finished do but these are good. Hope you enjoy! It was hard for me, but I take comfort in knowing that he wanted to do this and is really happy with it. I took him in the bathroom when he was done, and the smile and look on his face was priceless!

Donavynn Has Made A Decision

2008-11-02T14:28:00.007-06:00

Ok, not sure if he will change his mind or not but he recently informed us that he now has decided he wants to shave his head. If he doesn't change his mind I'll be posting pictures and possibly a video later. I'm torn, the hair is getting everywhere and driving us nuts, but last time he only lost some and we were able to enjoy him having hair for longer than most. I'm guessing it won't be like that this time because he is on such higher doses of chemo. But it still breaks my heart to watch it go. However, I won't let him know that because he is excited about it!

He also just ate some more chips, which is good.

Lab results are as follows:
WBC 500
ANC 40
Platelets 164

These are great, platelets came back up all on their own, WBC count is up 400 from yesterday and ANC is no longer 0. He did have 4% blasts, and for those of you who don't know what that means, blasts are bad. However, because he is on the GCSF they said that sometimes happens and that 4% isn't anything to worry about, but they will keep an eye on it. The GCSF has the marrow working in overtime so sometimes those cells sneak out.

So, I started this blog before my parents arrived and I'm finishing it now, after they left. And it's done, his hair is gone! :( My mom left the room, she said she couldn't stay for that, and it killed me to be the one cutting it! I did most of it, and my dad finished it off. I got some video footage, but I'm not sure if I can upload it because it may not be the right type of file, because my video camera wasn't charged so I had to use my regular camera. But I'm going to try. I saved all the hair, and will be sending some to Grandma and Grandpa in NY. I can't believe it is gone! But he is happy about it. He keeps saying "I'm bald!"

Before

After, with Grumpy and Derek
My 3 Baldo's!

With Sissy

As you can see by the above photos he was feeling better today, he sat up in the chair for quite awhile. He is resting in bed now, but still talkative and playing. He has his DS and is enjoying his new game. But while the other kids were here he played with some toys with them and had a great time.

Derek has really missed Donavynn, he even woke up crying for him last night! :(

So anyway, still no major updates, other than that he is feeling good, and his counts are on the rise, so hopefully the fevers will go away soon. Although even when he is febrile you would never know, he was still talking to us earlier and playing his DS, as happy as can be with a fever of 105! Which was quite frightening! Hopefully that was the last one, but time will tell. I'll post again if I get the videos uploaded and google will let me post them. I can't watch google videos here either so I don't know if it will work but I'm sure going to try.

Please keep sending up the prayers, they are doing so much good! I have my boy back for the first time in a month or more! And we couldn't be happier. Now if we can just get him healthy and get out of here that would be even better!

Solidarity!

2008-11-02T11:27:00.005-06:00

Grumpy Going Bald!

The finished hair do!

Cousin Derek going bald!

Looking good gentleman! Donavynn was very happy to see these pictures and know he won't be the only one who is bald. He is feeling alot better today. Still getting fevers, which sucks! But he has been eating a little and drinking, talking, and playing. I even got him up into the shower today. He wasn't so thrilled after the shower when they had to take the plastic off that was protecting his port dressing. But it was good to get him in there and clean him off. He lost a lot of hair in there. He has so much that you can only see in patches. But even though it is getting everywhere he still won't let me shave it. In all of this I am trying to give him as much power as possible. He doesn't have a say in most stuff but he does in that. So we'll just deal with the mess as it falls out on its own.

He says "My hair is falling out, and I'll be bald like Grumpy, but my hair will grow back." He also said "My hair has to grow back red, Nana said so!" Thanks mom, you brainwashed my boy! lol

That is about all for now. No new updates, they are going to try to get that biopsy report because they still haven't heard anything on that. I'll update when I hear more.

Donavynn's Shadow Buddy

2008-11-01T19:26:00.003-05:00

This is Donavynn and his shadow buddy. Look he even has his own mask! He also has a port, actually it looks more like a hickman but he is Donavynn's new treatment/hospital buddy. He named him "Two" lol This was his "I'm tired" smile. He is resting now, I just thought I would share his new buddy with everyone. If any of our fellow warrior families wants one you can contact Shadow Buddies
401 Clairborne Road Suite 103
Olathe, Kansas 66062
or by phone:
1-888-Buddie1

And they aren't just for cancer patients, they have ones for transplants, dialysis, burns and more. I thought this was so great because when I put his mask on him Donavynn said "He's got a mask just like me!" And it really seemed to make him happy to have a doll who looks like him, his hair is even falling out too!

An Uneventful Day

2008-11-01T17:50:00.002-05:00

Today has been pretty quiet and mostly uneventful. He is still spiking temps, but he got his blood today and has some good color now. He has also been eating a little bit. He had a few bites of brownie, some potato chips and a crabby patty gummy candy. It isn't much but for him it is huge. He has been playing his DS all day. And still talking to us! I don't have any more results yet. We are still waiting on the biopsy, which I thought would have been done by now... but it is the weekend so who knows. I am going to ask the nurse to check again when she comes back. His stools seem to have slowed, he isn't oozing anymore and they aren't as watery, so hopefully that will continue to get better. He also hasn't had an upset stomach since yesterday morning I believe.
Dave let me get a break today! I got to leave the hospital for a little while, which was nice. I worried the entire time, but thankfully he has been doing much better so I felt a little bit better about leaving for awhile. And they did fine.

He is currently snacking on his potato chips now, maybe he'll even finish them off!

On another note, now that things seem to have settled a little I feel that I need to share news on our other special little one. She had her state testing done awhile ago, and we got the results to them. She is still behind in most everything, measuring between 2nd and 3rd grade, but on the listening test she scored 9th grade, 7th month! We are so proud. Her teacher thinks it is pretty likely that she simply got bored with the other tests, but we are still going to continue to work with her and help her out, because her grades have been steadily improving. We know she can do it, but we also know that she has a lot on her plate right now as well. She has been so brave and so strong as well, and we are so proud of her too!

I guess that is all for updates right now. I'll post again later if we get any news.

Good Morning

2008-11-01T06:44:00.002-05:00

And so far it is. Donavynn had a few stools through the night, but not as many as he has been having. Most of it was just oozing small amounts. Unfortunately they are just as painful to clean, and just as important because we need to keep that area super clean. But he did great, and he had daddy up till around 2 am and they were playing his DS and talking! The talking has not stopped yet, even though the sedation has long worn off, so we are hoping this lasts. He seems to be feeling so much better, wanting to do things he hasn't in weeks. Part of me is wondering, and I'll have to ask the doctors if perhaps his port catheter location was causing some of his symptoms and making him feel worse... perhaps that was why he wasn't talking? Who knows. He'll be getting blood this morning, his hemoglobin was 7.9 I think, so hopefully that will make him feel even better. Also we learned that so far the only thing his wound culture has grown is normal skin flora. They could have caused the wound infection as well, but because they are normal for the skin we won't ever really know if they were invasive and causing the infection, if it was an infection at all. We'll probably just assume that that was it if nothing else grows. And he is covered antibiotic wise, so that is good. As far as I know his blood cultures are still negative, which has me a little boggled because his fevers have been pretty high. He has had this happen before just because of low counts, so who knows if that is it. So we are using Gentamycin cream (antibiotic) on his sutures as well as aquaphor as a barrier over it. We are also using ketoconazole for the yeast on the red areas. Hopefully that will help. They also just gave him so oxycodone to help with the pain, because his bottom is pretty sore. So hopefully that will help. Those are the updates for now, I'll post again after we see the doctors, or I get more information. Please keep sending up the prayers. Specific requests are in previous blogs. Thank you so much! And an additional prayer request: that Donavynn keeps talking!!!

Updates

2008-10-31T16:50:00.003-05:00

Ok so they did the procedure and got the port working agian! YEAH! I felt better about them doing it once they explained that it wasn't going into an artery it was going into a vein, a big vein but that is still better than an artery because they gush, veins don't. While he was down there, when they finished that dermatology came in and punch biopsied, and cultured the wound on his bottom. The good thing was that with the punch biopsy, it took the entire sore and then they stitched it up. So hopefully that will help it heal faster. We have to be very diligent in cleaning and keeping the antibiotic ointment on them to prevent that area from getting infected. He did great throughout the whole thing, thankfully, I was freaking out a bit. And the cool thing was that the sedation made him loopy, so he is TALKING to us again! He said, slurring his speech like he was drunk "And I love you too, and I have a bandaid, daddy where did you get that sticker, mommy, where is your sticker?" lol Just like that, one after another! I was crying tears of joy to hear his voice, and hear him saying things that didn't involve the words "Ow" or "tired" or any of the other one word answers we were getting if we were lucky enough to get an answer at all. And for the moment he is still talking so, my guess is that the sedation hasn't worn off yet. We will hopefully have some answers tomorrow, but who knows because it is a Saturday.

We did get the C-diff test back, negative! They will probably have to do two more just to be certain but at least the first one was negative. He is still oozing stool though, so hopefully that will clear up soon, that will surely help his bottom heal.

Also the infectious disease doctors were in, and they as well as dermatology feel that it is more likely that this is pseudomonis, instead of aspergillus, but either is possible, or it could be something else entirely. Hopefully we'll know soon. Either way he is on meds that will cover him all the way around, antibiotics, and an antifungal. Ok I think that is everything. I'm going to go now and enjoy my boy while he is chatty. Please keep praying, with the way the day has turned around, my guess is heaven's doors were stormed with prayers this afternoon, thank you! Please keep sending them up! We aren't out of the woods yet.

Going Ahead with the Procedure

2008-10-31T10:57:00.002-05:00

Ok, I guess they are going to do the procedure today at 2, it is similar to an angio. So I'm officially freaking out. Dr. Shore looked at his bottom and is concerned about aspergillus. I think they are going to start to treat for that just in case. He said if it is that, and it is just a skin infection than that is good. If it is deeper than that than we have a problem. We need prayers right now, please. I'll update again when I know more.

Dye Study Results

2008-10-31T09:47:00.003-05:00

Above: Getting ready for dye study
Vascular access team

The vascular team came and was able to get an IV in, and get blood for labs, so that was good. We also just got back from interventional radiology and the doctor spoke to me down there. I love that, I was able to stay in the room and he explained everything to me as he did it. The first problem was that it wasn't accessed, the huber needle that they put in last night apparently wasn't long enough so they had to take that out and put in a new one. Then he showed me the catheter, it is supposed to be straight, but the end of his is curled, so it is in a bad spot. The problem with that is that in order to give chemo through it safely they need to be able to get blood return, that is the easiest way that they can be sure that it is in right. So they are going to have to fix it. The options are a whole new port, or they go in from underneath and try to straighten the catheter. That is what the radiologist wants to do. He is going to talk to Dr. Shore and we'll go from there. They may have time to do it this afternoon, but I don't know if Dr. Shore is going to want to do that or not because his counts are so low and he has been running a fever. At this point everything is really up in the air. He is resting now. I'll update again later.

Specific Prayer Requests:
Are the same as last night with a few additions...

Please pray that they are able to make the best decision about what to do about his port.
Please pray that if they decide to operate all goes smoothly with NO complications.
And please pray that they find out what is going on soon and fix it!!!

Morning Update

2008-10-31T07:06:00.003-05:00

The night was better than some, but not great. He had a few accidents through the night, I really can't wait for the wound care team to get up here so we can get that taken care of! And with his fevers, comes the vomiting. The IV they started at our local hospital has gone bad so they are trying to get radiology on the line so we can get the dye study done, like now. Because with the vomiting and the diarrhea we need to keep the fluids coming, and with out an IV that is hard to do. He threw up the Tylenol he just had, so they are going to try to give him some sublingual Zofran seen as how the phenergan didn't work and then try the Tylenol again. I just hope we can get some answers soon, because I'm really not happy right now. They did get a stool from him last night when we got here and sent it down for C-diff among other things, and I don't know how long the other tests take but we should know about the C-diff sometime today. I guess that is all for now, please see the last post for specific prayer requests. I'm guessing that I'm up for the day now, the nurse just came in and said that they can't get him down for the dye study till 8:30 so they are having the vascular team come up to try to start another peripheral IV so he doesn't get dehydrated. I'm telling you, when it rains it freaking pours!

BTW for anyone who wants to call the room number is 816-460-1044 ext: 4408

If PCS sees this, please let Scott know what is going on, I don't have his number with me, so have him call me on the room phone.

I will update again later.

Quick Update - Back in the Hospital

2008-10-31T00:29:00.003-05:00

This will be a quick update, and I'll give more tomorrow when we have more news. His port never started working today so we were supposed to come back up Monday, they left the TPA in hoping that would help. We got just about home and he started vomiting. I thought it was from the fact that the only thing he had all day was orange juice but as soon as we got home we noticed he had a fever - 103. So off to our local hospital we went. We just got up to Mercy about an hour or so ago. They still can't get his port to work so they are ordering a dye study for tomorrow. For now they are using the IV that the local hospital put in. He has been vomiting on and off all night, but seems to be ok for the moment. I also noticed at the hospital that he has a small pressure ulcer on his bottom, just a touch larger than a pencil point. I can't believe I didn't notice that sooner. But the doctor doesn't' think it has been there long, so the wound care team will be up tomorrow and we'll go from there. His diarrhea has also gotten worse, back to the watery consistency so they did another C-diff test to see if the Flagyl is actually working or not. With the diarrhea not letting up it is going to be so hard to heal that sore. I am starting to freak out. There is way to much going on right now, and I'm terrified. Thankfully Dave is off for the next 4 days, so he'll be joining us up here tomorrow. That will help me, at least then I'll be able to get away from the room every now and then. So I think that is all for now, I'll post again as soon as I know more and have time. If any of my MySpace friends are reading this please feel free to repost on MySpace since I can't. We need the prayers.

Specific Prayer Requests:

Please pray that the sore on his bottom heals quickly and doesn't get any worse or cause any other problems.
That the diarrhea will stop soon, and they will find the cause and solution in order to make that happen.
That his cultures are negative and that the only issue is the diarrhea and wound.
That he will start feeling better, and be back to himself soon.
That his counts will come up so that his body can help the antibiotics fight off whatever is going on, and prevent any further issues.
That his port will start working again, and he won't need a new one.
That the doctors receive the guidance they need to get to the root of this once and for all so he can start to heal.
That I can get the strength that I need right now, I'm feeling really beaten down.
That Cheyenne will not suffer too much from all that she is having to endure with us. She has the love and support she needs, but this battle isn't easy on any of us.
And that Dave has what he needs to help himself, and us get through this.

I think that is all for now. On another note, we noticed today as well, that his hair is starting to fall out. :( But he told me we can't shave it, that he just wants it to come out on its own.

Final Day of Erwinia for this Round

2008-10-30T09:14:00.002-05:00

We are in clinic right now. I just got my lesson on his neupogen shots (G-CSF). We start those tomorrow so hopefully that will start working quickly and get his counts back up so he'll start feeling a little better. Just in time for him to get round two of HD-Ara-C and for them to drop again. His Erwinia has been sent up by the pharmacy but he can't get the shot yet because he hasn't peed and they need to check his urine before they can give the shot. His port is clotted this morning as well so we are waiting for them to get the TPA up here and unclot it so they can get his counts.

Donavynn has been the anti-Donavynn for awhile now, being difficult about things, things that are easy for him to be defiant with and don't require to much energy because the majority of his time is spent sleeping. But when an opportunity presents itself he will take it, for example when he had fries, usually he will eat them all, yesterday he ate a few and dumped the rest. So just little things. He still isn't talking much, when he does he repeats himself, or blurts out things that make no sense. Like the other day out of no where he blurted out "candy apple!" lol And right now he is having a shh war with me! lol I speak and he shushes me so I shush him lol. So there is still some of that playful Donavynn in there somewhere. I just wish we could see more of him.

Ok we finally got him to go, now we just need to get the shot, get his blood for counts and wait the required hour after the shot. He really wants to go home so lets hope all goes well again today. If all goes according to plan we won't have to come back in until next Thursday, so hopefully we'll get to have one week free from the hospital.

It is looking like we won't be going trick or treating this year, at least Donavynn won't. He is telling me now that he doesn't want to go. Of course we'll see what tomorrow brings, maybe he'll change his mind. But it isn't likely. So Daddy will stay home with him and I'll take Cheyenne. We scrapped the pumpkin carving for this year as well, because his counts are so low. Fresh fruits and veggies can carry bacteria and even though he wouldn't be eating it, I didn't want him touching it of even having that risk in the house. Hopefully Halloween will be better next year, because this has always been a day our family looked forward too. The kids just love it, and so do we, which makes it even more fun when the whole family can enjoy.

Ok well he just had his shot (10:17 am) so now we wait for the hour. But the TPA hasn't worked yet so it could be a little longer.

This whole thing is simply heart wrenching. Donavynn seems to be locked inside himself. And through all of this, that is probably the hardest part on us. Seeing him be so distant, so, not himself. I wish there was something that I could do to bring him out of his shell. He has regressed so much, and often times it feels like he is an infant again. It is very draining. But all we can do, is what we've been doing. Being patient and trying to get him to interact. Sometimes it works, sometimes he tells us to leave him alone. It all depends on the day. Hopefully when his counts go back up he'll start to feel better and he will return to himself. That is all we can do, is hope that this is temporary, related to the fact that his counts are low and his way of coping with his current circumstances. I can certainly understand it, there are times I wish I could do that, just ignore everyone, shut off the world and get lost in my own mind. So if the idea is appealing to me, I'm guessing it is just as much so to him.

That is about all for now. I'll update again when there is something to tell, and I have time.

Current prayer requests:

That he stays free of infection.
That his organs will stay healthy.
That this current state of mind he's in is temporary and he'll be back to himself in time.
That he'll start eating again soon.
And that he continues to respond to the chemo, stays in remission and doesn't have any adverse effects.

Thank you for your thoughts and prayers.

~Team Donavynn~

Finally Home

2008-10-23T10:49:00.000-05:00

We are home, and Donavynn seems to be doing better just since we've been home. His stools have slowed down even more. And he's talking a little more as well. He also ate a little bit yesterday. I spoke to the NP yesterday about what I can do to help keep him healthy, such as vitamin C. She said she'd have to talk to pharmacy because there are some vitamins that will interact with the chemotherapy but she made some other recommendations that I should have thought of. Because she said his best bet is healthy eating, but half the time he won't even eat. So his new diet plan is Carnation Instant Breakfast. He'll get it at least in the morning and then if he hasn't had much to eat throughout the day, he'll get more at night. I also got a bottle of pediasure, just one, because I don't know if he'll like it. The hospital also gave us Resource juice, by Boost to have him try and if he likes it, then I can get him more. And then I am trying to get him to eat at least one yogurt a day to help him maintain his normal flora. So that is about it for now. We go back up to clinic tomorrow for his Erwinia, and his platelets were 40 yesterday so he may likely need platelets tomorrow as well. I will try to update again tomorrow after we get home, provided that all goes well with the Erwinia. I have to take his Epi-pen to every Erwinia visit, just in case. So please continue to pray that he continues to get better and that he doesn't have issues with any of the chemo's. And thanks for all the prayers thus far.

Going Home

2008-10-22T08:29:00.003-05:00

Ok so we just got the news that provided all goes well with his dose of Erwinia today, we can go home!!! So pray that all goes well. Allergies with this drug are rare but they do happen. In fact I found a family yesterday that is going through the same protocol, they are a little further along than we are, and he reacted to the Erwinia just yesterday. I was so happy to find a family to talk to, who can give us a heads up of potential bumps in the road, support and we can help each other maintain a positive attitude. Because there are days when I don't have much of that. When fear takes over. But just talking to her yesterday helped me a lot. Anyway, Donavynn got a great nights sleep last night. No stools between 10:30 pm and 5:30 am! Which was a really nice break for the both of us. He was playing in his bed yesterday a little too, which was nice to see. And he even talked to Daddy and Nana on the phone yesterday. Ok the NP is here now giving me an update, will post again later.

Doctors Just Left

2008-10-21T10:59:00.003-05:00

"See my blue Gatorade tongue!"

Ok since the last post I got him to drink an additional 6 oz of Gatorade so a total of 12 oz! YEAH! The doctors said that his x-ray showed that the atelectasis is resolved so he just needs to keep playing with the pinwheel but they are D/Cing the Bipap. They said "Let's see how the next 24 hours goes, you are heading toward getting out of here." That was hopeful news, I think going home might help Donavynn feel a little better too, but I have been getting some good laughs out of him this morning. But when I mentioned possibly going home soon he clammed up again. I think he really misses home. :(

From what I have found the virus could have also contributed to the fever, so perhaps that was the source of the fever he had that started last Tuesday. Who knows.

I guess that is all for now, overall great improvments and hopefully they will continue and perhaps we'll be lucky enough to go home tomorrow or Thursday at the latest. That would be nice, we miss our own beds! lol Keep sending up those prayers! Thank You!

Some news and more of the unknown...

2008-10-21T08:47:00.003-05:00

So his stools picked up again yesterday to around 7 or 8, which had me a little boggled until this morning. The one nurse practitioner was just in and said that his virus panel came back and he has an enterovirus as well. So the stools are from the C-diff and the virus. Honestly, he can't get a freaking break! So that will just have to run it's course. She said she is going to talk to the team, but they are pretty sure they are going to D/C all the other antibiotics (except the Flagyl) because he has been fever free (48 hrs now!) and every blood culture has been negative. They are still going to have the wound care team come up this morning. Last night I called in the resident because his bottom is still really red, and it is spreading even though he has been laying on his sides, I told him I thought it was a yeast, which he has problems with when he gets diarrhea and it is, but they still want the wound care team to take a look to make sure they are doing all that they can to help him. She is also ordering some kind of "bath" for his bottom. It is supposed to soothe it, can't remember what she called it. He went down for his repeat chest x-ray this morning and provided that shows them the same thing the bipap machine has been then he will be done with the breathing treatments because he has had really good volumes. Now I just have to keep him using the pinwheel while he is bed. They are also taking him off of the monitors, which is good.

I am to push fluids and try to get him to eat, he ate 2 mini muffins this morning and hopefully he'll eat some more. He had a few sips of water, then I remembered that they used to have sippy cups up here and thought that maybe that might help him drink if he can have it in the bed with him. What do you know, they got him one and he has drank 6 oz of Gatorade in about 20 minutes, when over the entire day yesterday he only had about 2 oz, and that is probably being generous.

Now for the unknown, still no time line for discharge. They want to see a decrease in stools and they want him to be eating and drinking better. So we are pretty sure that by now the Flagyl is working and the extra diarrhea is from the virus. He should still have some from the C-diff but not this much by now. That is about all for now. I'll post again after the doctors round.

Erwinia dose 2 down... and today's updates

2008-10-20T17:58:00.003-05:00

Ok today has been better with many improvements. His breathing is good. With the Bipap they like to see 10ml volume per kilogram (lung expansion) He weighs about 22 kilograms so he should have 220 ml with each inspiration yesterday he was getting about 170 or lower, today he is getting over 200 for most respirations and some are even over 300 ml, so that is really good. They also gave him a pinwheel to blow on. I wish I had thought of these things at home when I couldn't get him to do anything. The RT said blowing bubbles or a pinwheel works, so I'll have to remember that if he is ever bed ridden again, because he is still too little for the incentive spirometer.

He is still fever free thankfully. And he even ate almost a full bag of mini muffins today, he left about 1/2 when he said he was done, so that is an improvement. I was also able to get him to laugh, though he still doesn't have a whole lot to say. I made up a silly song to sing while I'm cleaning him to help distract him because his bottom is so sore, it made him laugh, but he wouldn't say it. Then the one time I was cleaning him he screamed "Stupid poop!" lol As soon as he knew I heard what he said he clammed up again. His bottom is so super red, and I was really concerned about turning and positioning him, but that wasn't helping, it was still beet red and he would scream anytime I cleaned him or applied any ointment, so I called in the doctor because it was looking a lot like yeast. And I was right, so they are ordering something for that as well, and the wound care team will be up in the morning to take a look at it. The nystatin just wasn't cutting it, and it usually doesn't for him, he usually has to have the ketoconazole, so that is what he is ordering and it should be up soon.

Dose 2 of Erwinia went well. Lets keep praying that the rest of them do as well. He is napping right now, he hasn't slept at all today so this too might be a good sign, he hasn't been quite as tired. I think that that is all for the updates for right now. Gonna go for now, will update again when there is more to tell.

Pictures

2008-10-20T11:23:00.007-05:00

Not happy!
Sleeping last night
All of his machines
Breathing treatment
On steroids before admission.
At clinic before he got sick.
Playing the Wii at clinic
Donavynn and Angela
A good meal before starting his Ara-C

Daddy got him to laugh!!! Before he got sick.

Improvements and News

2008-10-20T08:44:00.002-05:00

Ok so the night has been good, and brought about some good changes. His heart rate is normal now, he was a little tachycardic yesterday and the bipap seems to be helping as well because he is breathing a little slower than before. Yesterday he had really shallow respirations and was breathing about 70 breaths per minute. Today he is breathing a little deeper and between 30 and 50 bpm, depending on what is going on. His abdominal girth was 63 1/2 cm this morning, not sure how often they are going to check that, but that is our baseline right now. He still isn't saying much. Most of the time won't even answer anyone, every now and then we'll get a nod and Dr. Shore just left and he got a wave but that was about it. It has been officially 24 hours with out a fever!!! So the antibiotics are really kicking in and doing their job. I think that the medicine they are giving him for the gas is helping a little as well, he doesn't seem quite as miserable.

The doctors have decided to continue with the Erwinia, at least for now, if things get worse again then they can stop it later because he has 5 more doses to go in this round and they are spread out over days, and the Erwinia isn't as toxic as the PEG so he will be getting todays dose and we'll go from there. Which is good, I guess. They gave him the first dose on Saturday and it would be a total waste if they didn't keep going with it. But I'm glad that they have the option to stop giving further doses if there is an issue later as well.

His color is really good today, I just wish he would get out of his own head and start talking to us again. He is becoming the strong, silent type. I prefer the strong, talkative type. So those are the only updates for right now, I'll post again when there is more to tell. Please keep praying, they are working!