This is an update on Andrew but first - Happy Birthday to Michael and God bless Andrew who is flying high with the Angels.  Fly Baby fly. 🧡

I have had Andrew’s Autopsy results since July but was unable to bring myself to open the email.  My poor sweet boy.  Brutal!!!!!  There is a lot of medical information in the report that I will not put on you.  I will write out the one paragraph that concludes what the Doctor found when she did the autopsy on Drew. 

Read below -

23 year-old male with a history of Diamond Blackfan Anemia and subsequent Myelodysplastic Syndrome, Cerebral Palsy and Developmental Delay, who initially presented for Bone Marrow Transplant, but had an extremely complicated hospital course complicated by Acute Respiratory Failure, Venoocclusive Disease and Transplant Associated Thrombotic Microangiopathy, he developed Cardiac Arrest and Multiorgan Failure, and died on September 18, 2022 at 4:45 p.m.

There was so much more in the report even down to his right big toe being broken and I know exactly when that was done.  When the PT women came in the PICU and made him get out of bed.   This was around the 3 month mark in the PICU.  It took a long time for them to get him sitting on the side of the bed.  Then once he was positioned they made him try to stand up - and after laying in a bed for three months and not being able to move, he had no conditioning left so when they went to stand him up, he ended up on the tip of his toe on his right foot which was absolutely brutal for Andrew.  Andrew had two surgeries on his feet within two years, and he had screws and plates in his big toes where his toes would not bend so when he went to stand on his tippy toe it broke his toe.   I remember him yelling ow, ow, ow  and they finally got him back on the bed.  I was so pissed.  I knew exactly what had happened and I felt so bad for him.  

There were a lot of difficult things for me to read in his autopsy report but one of the tough ones was how heavy his lungs were.  So much fluid in them.  Breaks my heart.  All those months on and off the vent.  No wonder he couldn’t breathe.  No wonder he was telling me he was done.  So many months watching him suffer.  It makes me sick to my stomach when I think of all the different medical issues he had and what he went through.  I try not to go there anymore.  Think about it all.  It is just too hard.  I try to think of him enjoying Heaven with family members, friends and Callie our lab that we lost last year too:(. I know he is up there doing our Lords work and being so proud to do it.  God bless you Baby.

Dr. Caywood - Drew’s Hematology/Oncology Doc said to me that she does not know why Andrew developed TMA - Thrombiotic Microangiopathy.  TMA - a systemic disease characterized by microangiopathic hemolytic anemia, thrombocytopenia and organ failure. Post-bone marrow transplant TMA is a life-threatening condition that has been reported to affect between 0.5 and 63.6% of BMT patients.  I am so grateful and know how blessed we are to still have Michael with us.

How Andrew’s lungs are helping others with Diamond Blackfan Anemia and TMA - Doc says that by publishing their experience with DBA and TMA, they might be able to alert the Medical Community as to the possibility that patients with DBA may be predisposed to this complication and that it will be useful to be especially vigilant and consider prophylaxis with Ursodial and or Defibrotide - like Michael received.  I was upset that they did things differently for Andrew but I am not a Doctor and each patient has their own medical journey.  One thing I did tell her is that she should ask the parents which route they want to take.  Every drug has side effects and can cause other issues but once I saw what happened to Drew’s liver and all that came after that - it pissed me off!  I told her from here on out they better start using these drugs on their DBA patients or they are going to lose more patients - and they have:(. She also said that Andrew’s results have helped them to consider lung fibrosis as the cause of lung disease post transplant, especially for patients with DBA. They have submitted their recent experience with Adolescents and Young Adults with DBA to an International Conference to share their experience with others, so outside of Nemours, transplant experts are also aware.  Thank God for that and thank you Andrew. 🧡🙏🧡

My Baby is up in Heaven having a great time I’m sure of it.  I know he continues to check in on us on occasion.  These past few weeks have been brutal!  It seems more difficult now.  It doesn’t matter if you’ve lost a child and it’s day one or if it’s years out.  For myself the pain is still so brutal.  This pain is a life sentence.  It will never go away.  Can I share something with you all?  Please - if you know someone who has lost a child and they are still in such pain - please - whatever you do - don’t suggest they go to therapy.  Unless you have lost a child - you will NEVER know this pain.  I cannot believe people have said that to me still to this day.   I don’t care if you think you are being kind - don’t!  It’s rude and you have no clue!  I  will grieve my sweet boy till the day I die but I will be forever grateful and honored to have been Andrew’s mother for the 23 years he was on this Earth.  Same goes for Jim, Jimmy and Michael.  We had a nice time tonight celebrating Michael and Andrew.  🧡

From our family to yours - we wish you a Happy, healthy and a safe holiday season.  Hug and kiss your kids.  Who knows what the future holds.  Look at what’s going on with Michael now.  You just never know.   I will update you on Michael once he has all his testing done.  

Blessings,

Donna 🥺🙏🧡