Chemotherapy and Radiation

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

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.

---------------------

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.

-----------------------

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

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!!!

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

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...

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

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

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...

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...

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...

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

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

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

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

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)

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...

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

A Pretty Good Night

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

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

                                               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

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

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!!!

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

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

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

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)

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

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

                                              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

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!

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

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

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)

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

                                   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

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

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

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

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!!!

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

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

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

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!

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!

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