Hello, Team Donavynn.  We have had a busy summer so far.  Donavynn went to Camp Hope - which is an amazing camp for children who are currently fighting or have fought cancer. They are staffed with doctors and nurses to ensure that each child has the medical attention that is needed.   He has done this now for about 5 or 6 years; he missed camp the year of his transplant which broke his heart but his doctor Dr. Shore brought him a care package from camp to show him that he wasn't forgotten.  While he was at camp, the girls took a trip to St. Louis with their godparents and had the time of their lives going to the zoo, The Magic House, swimming, Six Flags, etc. Since we have been home, we have tried to keep things pretty mellow.  I've been working a lot so we can take the whole family for a last hurrah of the summer in St. Louis and the kids have been enjoying their wading pool, helping out with yard work, reading, and playing with each other - the games they come up with are always entertaining.  Donavynn has really enjoyed the one on one time with daddy - after the girls go to bed, they stay up and play Xbox.  This is obviously something that they can't do much during the school year since they all have to get up so early.  That being said, the kids are enjoying the summer and are in no rush to return to school, but as always the days are slipping by quickly, and they will be back to school before we know it.

Donavynn struggled with ear infections throughout the school year; we thought that he would be fine over the summer and with his history of tubes falling out quickly we opted to wait to have them replaced until August... that appears to have been a mistake as he has been plagued with ear infections all summer as well.  This is more than just a little upsetting, but hopefully, the surgery will eliminate that problem next month, and he can have a good school year.  Last year he missed a great deal of school for many different illnesses - bronchitis, influenza A, ear infections, etc.  We are hoping for a better year this time around, but we understand that his immune system will never be what it could have been.

Now on to the more exciting information - July 8th - just three days away - is Donavynn's five year transplant anniversary.  It is an amazing day, an amazing accomplishment.  My heart is so happy and filled with hope and joy.  We are feeling so blessed.  The 5-year mark is an amazing accomplishment - one where many would use the "c" word.  I am too afraid to use that word; that fear will probably never go away.  Any neurological complaint will always worry me since that is where his relapses were - a headache, dizziness, etc. But we look forward to this day and plan to have a small celebration.  He is our miracle boy, he always has been... we lost 3 pregnancies before we were finally blessed with him - our healthy miracle baby, and then he defied odds over and over again to grow to be where he is now - despite cancer, despite the battle in the PICU that was scarier than any cancer battle he had endured, despite the severe liver GVHD... we are so grateful.  I can't even put it into words.  During all of my prayers I begged the Lord for healing, I told him that we would share Donavynn's story with all who would listen.  We would tell them all about the miracle he was given. That God is here that he does still give miracles.  Back when he received the transplant we had big hopes for this anniversary date.  We wanted to throw a big party to celebrate. But things didn't work out that way, and I am honestly happy that it didn't.  To me, that would feel like tempting fate. So I think we will just get a small cake and celebrate as a family - maybe with his favorite meal. 

I would like to say that while we are elated at this gift he has been given, we also want to remind you - the public - that this isn't free.  His cancer and subsequent treatment has forever altered his life.  We will always struggle with some of what he has lost, but do find comfort in the fact that it could always be worse.  I do not bring this up to sound ungrateful - I only wish to educate people.  Childhood cancer is a thief, a murderer.  At the least it takes weeks, and months away from a child, it can take the ability to have children, takes brain cells and thus the ability to function as a normal child, it damages other organs such as the liver, the thyroid, and the heart, and at the very worst it takes lives far too soon.  Just in the last week, I have seen at least three children on my facebook feed who were taken too soon by this beast.  Families forever fractured, parents and siblings grieving - pain that we all as parents fighting this beast fear.  So please remember that while we celebrate - we still have a battle to fight. Children are still being diagnosed every day, they are losing precious time with their families as they fight in the hospital, they are losing time with friends, time to be children... When Donavynn was in the PICU, we were reminded of how much time Donavynn had spent in the hospital during one of the many "talks about his prognosis".  The doctor said there was no shame in unhooking him and loving him until he passed.  He told us to consider his quality of life and asked: "how much time has he been able to spend at home during all of this?"  When we sat down and thought about it, we felt incredibly selfish.  His quality of life, by most standards, was awful.  But we also knew that though he was in the hospital, we did everything to make that time enjoyable.  We had many laughs during the pain; we had lots of fun despite the needles and treatments and we just weren't ready to give up.  So perhaps we were selfish.  Perhaps we did fight too hard.  But we will not apologize for that because we are blessed with this amazing 12-year-old boy!  If you would like to honor Donavynn and his battle, do something to celebrate his five-year anniversary then PLEASE make a donation to your local children's hospital or make a donation to Children's Mercy Hospital Cancer center - they do their own research there just like St. Jude's.