Nolan's Helpers #NolanStrong
Tim and I had a reassuring meeting with Nolan's team of doctors. The lymphoma has not spread to his bones or spine. Phew! They also reassured us that they will not allow his body to reject his new liver. They are keeping a close eye on his liver and kidney function. They will continue with his IV treatment once a week for the first month (with total treatment lasting 3 months). Nolan is doing much better today after one treatment. He responded very well to the treatment, so they are hopeful that will continue. They have set a discharge date for Wednesday! He was able to eat breakfast and lunch and even painted a picture. Thank you, again, for all the love! #nolanstrong
Even through all the pain, Nolan still smiles his sweet, gentle smile. I am so proud of this brave boy. He's been through more than any person (especially a child) should have to endure.
We are having a team meeting with a representative from each of the teams (transplant, oncology, neurology, and nutrition) today or tomorrow. They are starting him on the IV medication to treat his lymphoma. They do not think he will need traditional chemotherapy right now. The medication he will be on is in the chemotherapy "family". The results have not come back from his lumbar puncture and bone marrow biopsy. Preliminary findings are not showing that lymphoma has spread to those areas. The neurology team is using their fluid draw to make sure it has not spread to his brain. Preliminary results did show that he does have pressure on the brain. Whether that is related to virus or lymphoma has not yet been determined. His vision has also become a concern, so more vision tests will be completed. It is likely that he will have to begin IV nutrition. His eating has slowed and he has not been able to tolerate tube feeds.
We are hopeful he will be able to start his kindergarten year on time, but that is not likely. As his nurse practitioner stated this morning, "he is very sick". We hope to get services in place for him so that he can still learn. It will be a long few months for him. We will be in and out of Children's and Dana Farber.
We want to send out a huge thank you to all those who have donated money for Nolan's care and for those who have signed up to donate meals. We are also thankful for all those who are praying for Nolan. We absolutely believe in the power of prayer.
He will fight this!! #nolanstrong
You all have shown me how wonderful a community can be when we rally together to help one another! Keep up the good work! Keep sharing... keep posting.
Your story as told by Tara Sullivan touched me. Although I can not contribute a large amount of money, I would gladly give a Kidney or Kidney tissue at anytime during Nolans treatment..... I teach music, including teaching music as therapy, so if that in any way interest him let me know..... If there are any other ways I can help let me know. I will Ofcourse keep him and your family in my thoughts and prayers.