Noah had his day +100 bone marrow biopsy on July 30, 2019. The results of the test revealed, Noah had grater then 95% of donor cells (Lucas’ cells) and greater then 30% cellularity. This is all positive and the transplant is working. 🙌 The joy of hearing the results was so excited. Noah still has a ways to go to recovery, but he’s on the path. He will always have to be monitor to make sure his body stays on track and he doesn’t develop anything from the medications or treatments.
on August 12,2019 day +110 he had a doctors appointment and his labs looked fantastic. His ANC was the highest it’s ever been. 🙌
On August 15,2019 day +113 he had surgery to remove his Hickman line. He’s had his line for 4 months and prior to that he had a Picc line for two. He was so excited to get the tubes out of his chest. This is a another major milestone for a transplant patient. When I saw him, I was so excited to see my son without tubes but reminded of all the painful memories of how he got there.
Starting on Noah’s next doctor’s visit he will have to be poked to get his labs. He’s not looking forward to the needle but he’s glad he doesn’t have a line. He cant wait to take a shower without worrying about his tubes getting wet. Most of all he can’t wait to go swimming.
Noah will start Hospital Homeschool, soon. When his brother, Lucas and Sister, Ary started school it was really hard for him, knowing he didn’t have a first day of school too. He misses school and his friends. After dropping off Lucas and Ary he wanted to drive by his school. We drove by and he said, “I can’t wait to go back.” His doctors feel he should be ready to return to school in January 2020.
The transplant chemo therapy cleaned out his immune system and he will have to be vaccinated again. He will start his vaccines a year after transplant. He’s not looking forward to that.
Noah had to take several pre test prior to transplant, to make sure his organs were functioning correctly. He now has to take all the test over to make sure the chemo and medication didn’t damage anything. He will start the tests next month.
He’ll continue to take 25 pills of medication daily. The doctors will keep him on the medication for a year to protect his body from getting an infection and help his donor cells continue to grow.
This has been our worst nightmare to see our son have this horrible disease. Our entire family has been through so many challenges and it’s made our family stronger. Noah has been through so much at the age of 13. He’s had 37 blood transfusions, 3 bone marrow biopsy surgeries, pic line surgery, two Hickman line surgeries, two ER admissions, two ambulance rides, chemo therapy, bone marrow transplant and several weeks in the Hospital. Noah continues to show us how strong he is and how is determine to fight this horrible disease. These past 8 months we’ve seen our son develop into a young man. We are so proud of the person he’s becoming.
Lucas will always be our superhero and will never forget that he saved his brother’s life. He will always hold a special spot in Noah’s heart, even when he bugs him.
Noah will continue to have several restrictions for the next year or longer. With every transplant milestone the doctors give him a little freedom.
Thank you everyone for your prayers and support. We truly couldn’t have gone through this without the support of our family and friends.
White blood cells (WBC) 2.4
Hemoglobin (HGB) 13.4
Platelets (PLT) 119
Absolute neutrophils count (ANC) 1780