I had a hard time putting these feelings into words. Being thankful for him really doesn’t say enough.
He has dedicated almost 4 years to saving John. He has lost sleep over John. He has probably even cried over John. How can I possibly, appropriately thank him for devoting his entire career to curing childhood Leukemia in children like my son?
He has not only treated and tended to John but he has cared for our family. There have been moments along this journey where he has carried us, giving us hope and a reason to press forward. There have also been moments where he has sat with us speechless and devastated, acknowledging our feelings of defeat but never letting go of the chance for a miracle.
He is the reason we came to St. Jude and he is the reason we stay at St. Jude.
Dr. Pui is more than John’s physician, he is family and I am eternally thankful for him.
Update on John:
John’s MRD continues to be stable – this past Monday it was 0.030%, down from 0.065% two weeks ago. I wish I could tell you what it all means but I can’t and neither can the mighty St. Jude. I occasionally allow myself to dream of the day it goes away but the reality is – it’s unlikely. However, I will continue to pray and hope for his much-deserved miracle.
John had an MRI of his liver/heart this week to gauge the extent of the damage to these organs from iron accumulation/overload (from his numerous blood transfusions). Unfortunately, there are signs of damage to both organs so, he will begin Chelation therapy ASAP – meaning tomorrow. Given the extent of iron overload we may need to do as many as 1-3 treatments a week for up to 3 months. (Chelation Therapy is a chemical process in which a solution is injected into the bloodstream, where it binds to the iron and is removed through the kidneys). We pray the damage to his organs is not extensive but we won’t know until the chelation process is complete.
PT continues to be a slow process. However, he’s enjoying the ability to sleep on his side and get up on his hands and knees and stretch his back. These new positions have taken tremendous effort and I’m incredibly proud of his determination.
Wish List Wednesday:
So, since my last post (last Wednesday), 489 unique users read my update. Some of you even came back for seconds yet, less than 1% of you made a donation. Hmmm. I obviously didn’t convince you that childhood cancer is worth your hard earned money.
So, this makes me feel a few different ways. Sadly, I feel like the accident on the side of the road that you can’t help but look at but your not won’t stop, pull over and help. I also feel a bit self-conscious about sharing the details of John’s suffering and our family’s heartache.
I promised myself a long time ago that I would only share the details of John’s story if it served a greater purpose – awareness and fundraising. I want to believe in some way I am changing the way you look and feel about childhood cancer – that you are much more aware that childhood cancer is not rare – that childhood cancer doesn’t happen to “other people’s children”. But I NEED you to take action on those feelings. I NEED you to help me fund better, less toxic treatment options for children. I NEED you to help me fund Cures!
Ten+ children have died on the transplant floor since we’ve been back here. Those are real lives lost, children’s lives! Those families will be eating Thanksgiving dinner without their children this Thursday. So, while you are enjoying your Turkey dinner surrounded by your family, imagine the seat of one of your children being empty!
Please donate to www.stjude.org/eveningofhope . If all 489 of you that visited last week donated $25 it would equal $12,225. How AWESOME would that be!
Next week I’ll start my Auction Item Wish-list. I have some fun and exciting asks!
Very thankful for your support.
Gobble ‘til you wobble,