Donavynn has relapsed...

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...

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!

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

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

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

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

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!