Saturday, December 4, 2010

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.


Thursday, November 25, 2010

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.

Tuesday, November 9, 2010

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.

Saturday, April 24, 2010

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.




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