Stem Cell Transplant postponed MIBG here we come….
By April on January 15, 2013 in Uncategorized with 2 Comments
After a what felt like the longest 3 days, we now know we are home another week. The team has decided MIBG therapy is the next best step in Brady’s treatment prior to stem cell transplant. I was able to clarify there is not a limited amount of hours per day that we are allowed in his room; however, we must wear a monitor as there is a limited amount of radiation that we can be exposed to. Actual physical contact is limited & we can not get in the bed with him.
He will be admitted next Tuesday & he will receive the MIBG infusion on Wednesday then we are there for a few days basically waiting for the radiation level to come down. Typically, MIBG therapy is used for relapse neuroblastoma, but it is now being introduced as treatment prior to transplant if children still have more than 1 or 2 lesions after chemo. Transplant will now take place about 6 weeks after MIBG Therapy.
It’s going to be a rough couple of days emotionally, but if this is what the team feels is best for him then we will get through it. We have to. Brady has been through so much already & still has a long road ahead of him, but if he can remain strong then we need to remain strong for him.
Attached is a link to a YouTube video of the head of neuroblastoma, Dr. Shusterman. The video briefly explains the MIBG therapy & shows the room he will be in.
http://m.youtube.com/#/watch?v=HfE7bLu88_8&desktop_uri=%2Fwatch%3Fv%3DHfE7bLu88_8
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January 22, 2013 at 12:23 pm ·
Hi April. My brother and sister-in-law are currently at Boston Children's Hospital. Their son Dryden was diagnosed with neuroblastoma this past August. Their home is in New Hampshire...so they have not been home since August. Dryden is on Day 5 of his stem cell transplant. He's on the 6th floor...When you return to Children's....please introduce yourself to my brother (Jon Sycamore) and his wife (Jocelyn Sycamore). Needless to say, it's been a very challenging journey....we're all trying our best to remain strong in order to get through this...Jon just sent some incredible portraits taken by Flashes of Hope. Just noticed a fundraiser on your blog...I'm in Chicago...my older sister is in Denver...younger sister in Seattle. We're struggling with the distance...and hope to plan a fundraiser to raise $$ for Jon and Jocelyn. Jocelyn left her job to take care of Dryden 24/7.
January 23, 2013 at 9:36 am ·
Hi Beth, We have stayed on 6 East many times & I remember seeing their last name on the patient board. We were suppose to be in for stem cell transplant now, but as you've probably ready- it was bumped and Brady is getting MIBG therapy tomorrow. We will be admitted later this afternoon. Brady will be isolated to his room while we are there this time due to radiation levels- so, he won't get a chance to meet Dryden this time. I think Tim has met your brother before. Brady doesn't let me out of the room which is going to be our biggest challenge this weekend since we Tim & I both need to limit our radiation exposure. I am out of work to take care of Brady as well. It's been tough, but thankfully our parents both live close by & our community has been incredible.