On Tuesday July 30,2019 (Day +97) Noah had his 3rd bone marrow biopsy surgery. When they took him back for surgery it was a different feeling, from the first two times. The first biopsy we were scared and nervous, not knowing what was wrong with him. The 2nd biopsy we were hopeful the transplant worked. The 3rd biopsy we are excited to get the results, to confirm the transplant continues to work. Will get the results of the biopsy next week.
His doctor cleared him to walk or ride his scooter around the block without a mask . He was extremely happy about that and has been taking his scooter around the block. The doctor has also allowed him to eat in clean public restaurants when it’s not crowded and only sit in the patio area.
Friday, August 2,2019 was Day +100. This is a major milestone after a bone marrow transplant. Looking back on Day 0 with scared feelings of the transplant and thinking Day +100 would take forever to get to. The last 100 days haven’t been easy for Noah. He was hospitalized 8 weeks for the transplant. A week after he was released from the hospital he returned back to the hospital for a virus and was hospitalized for another week. He has been homebound and can only leave the house to go to the doctors. Noah is very social and it’s been hard for him not to have any public contact. He’s been trying to stay positive and knows it’s temporary. He can’t wait to have his normal life back.
Friday, he saw the surgeon for his Hickman line. The surgeon has agreed to remove his line on August 15,2019. It will take two weeks for it to heel. Once it’s heeled he can go swimming in non public pools. He is extremely excited and cannot wait.
After seeing the surgeon we went to lunch at On the Border and ate in the patio area. Noah hasn’t been in a restaurant in 8 months. Before Noah sat down, we had to wipe down his seat and the area he would touch. He enjoyed himself and was so happy to be out of the house.
He will start Hospital Homeschool on August 14th. He won’t be able to return to school until January 2020. He can’t wait to go back to school and see his friends. He continues to take 25 pills a day to protect himself from getting sick. He’s still on high risk for infections and cannot be around crowds. He cannot be in the sun, due to all of the medications he takes.
Everyday seeing our son improving is the best gift a parent can have. We continue to pray Noah makes a full recovery.
White blood cells (WBC) 1.5
Hemoglobin (HGB) 12.9
Platelets (PLT) 109
Absolute neutrophils count (ANC) 1070