Carter’s first treasure was his beloved Blue Blanket. He took it everywhere and affectionately referred to it as, “Boo Blanky”. The term was such a staple in our home that by the time Izzy could speak she called her own purple blanket “Boo Blanky,” assuming that’s what blankets you loved and cherished were called. She has slept with it every night since as long as I can remember, taken it everywhere that has mattered and snuggled with it through all her darkest of times. Until now.
Tomorrow we will arrive at Cincinnati Children’s Hospial at 6:30 am like we have so many times before. But this time Izzy will not be able to take Boo Blanky with her. Actually, she can take nothing into the room with her and anything the hospital gives her to keep her occupied must be destroyed. This time Daddy and I won’t be able to snuggle with her and this time even our time exposed to her will be limited.
Tomorrow morning Izzy will have a line placed and in the afternoon Kendrick and I will go through a special type of hazard training. But the thing we will be taught to caution our exposure to isn’t any chemical or gas. It’s Izzy. All of this will prep us for a clinical trial we will begin on Tuesday — a treatment called MIBG Therapy.
On Tuesday she will receive an infusion of radiation so potent that she, herself, will become radioactive. This radiation is somehow combined in a way I can’t begin to understand with MIBG, which clings to Neuroblastoma cells. After it clings to them our hope is that it kills them. She will be kept in a lead lined room, with lead shields around a bed that she cannot move from. Special devices inside the room will monitor the amount of radiation she is emitting and until that level is of the legal limit she will stay in bed. This can take anywhere from three to 14 days. During that time Kendrick and I will take 12 hour shifts as her caregivers. The hospital staff will be limited in the amount of time they can spend in the room so Kendirck and I will take care of most everything.
Two weeks after this radiation is infused, Izzy will receive an infusion of her own stem cells that have been in a freezer for years. This is NOT a stem cell transplant, as there is no high dose chemotherapy being given. This means that Izzy should have few side effects during this treatment. The hardest piece of this treatment will not be the physical battle but the emotional battle she will endure.
I will update daily on social media to let you know how she’s doing.
I hate this, I really do. The past few weeks we have had hard questions in our home regarding this treatment and why it’s necessary. Hard questions that are too vulnerable and private for me to mention. They have been sacred conversations within our family. They have been hard and they have been heartbreaking.
Through all the mental anguish I feel building, I keep coming back to this one question: Why did we choose Cincinnati Children’s Hospital for her care? The truth is, we chose it for one reason: MIBG Therapy. In summer of 2012 when we were beginning aggressive treatment we first researched our options. We eventually found a NB expert in Cincinnati who was offering a clinical trial. It was the exact same protocol she could receive anywhere else with the exception of this MIBG Therapy that was being given in the middle of it all.
A few months after we began treatment, however, the trial got pulled. MIBG Therapy has still been happening for patients with multiple relapses but our case has never been severe enough to require it…until now.
So here we are. Back facing the treatment we first came for six years ago. I don’t know what I believe about a lot of things but I know I don’t believe in coincidences. I have to wonder if this is the treatment we have needed all along. Have to hope that this could bring the freedom for Izzy we have been waiting for.
Tomorrow, when my mind is going crazy and my heart is breaking, I will remind myself that this is what we first came for. And I will remind myself that maybe, just maybe, her healing will come through this treatment once and for all. Please join me in praying that for her body. And pray peace for her sweet spirit as she endures this time without her beloved blanket.
Blessings on you today and LIFE for Izzy.