I share this information with permission from this child's mother.
We all woke up hoping this was a nightmare and realized it's reality. Yesterday there was tons of crying, some punching and chair throwing (new to me), swearing and anger. Today brings a sense of numbness and through the pain begins the research...
The conversation we had with Madeline yesterday was so private and deep. I won't share everything she said but I do have to share that at 9 years old she was more concerned about us than herself. But she said she doesn't care what she has to do to make it. I made sure she wanted to do this for herself and not for us. After the 3rd diagnosis much of the plan is a choice, and we decided to give the choice to her.
As it always goes, Madeline and Juju spent the night reminding us not to cry and telling us we were strong enough to do this again. We are all trying to gather what strength we have left although it's hard to even stand up right now.
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At the end of our conversation last night Madeline said to me (after I told her I wasn't ready to share the news yet) "you can tell everyone. I don't care if you tell the news! The more people who know, the more people who will try to save me!"
The reason I share this is because at this point we do need to look high and low. And we will have choices to make. We are looking into any and all options. We have an amazing team of doctors who actually love Madeline and are doing their research as we speak. We will discuss with them options next week. However, I will also be bringing to the table anything else I can find. If it is the best plan, time and distance and other "inconveniences" don't matter right now.
For the facts, Madeline was treated for high risk ALL from 2011-2013. Chemo only. Did perfectly. Dec 2014 developed secondary (treatment related) AML, monosomy 7. No remission after 3 rounds of chemo. Went to transplant with MRD of 2.5. Matched sibling cord/marrow transplant. Sailed through transplant. All went well. Relapse on day +180. Even after all of this she is in wonderful physical health somehow mentally and emotionally ready to fight again.
I assume Madeline would be someone's dream study and we are looking into EVERYTHING!!! Yes, everything. If you'd like to share please be in tune with the description of her illness. Many cancers are very different. I do ask if you are sharing advice that you be as specific as possible. We already have the top docs on this but it can't hurt to share thoughts. Even though I may not have time to respond. I realize I have many doctors, nurse and research friends out there and I don't ever want to regret these days where we are looking for the next step.
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If you know anyone doing research, share this blog post. Ask them if they know anyone doing research in this area. I have direct communication with her mother and will pass on any contact information that can help.
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