The last week was great spending with Nana & Papa - we ate good, we laughed, we talked, we hardly slept! So sad to see them go home Friday afternoon. 

We were very happy though to finally skip Madeleine's Friday clinic visit! Thursday labs came out really good post-transplant and our NP has shared with me that she really thinks Madeleine is on the upswing and recovering nicely. Dr Davidson is back next week so we'll be happy to see her as well as to receive the final word on Madeleine's belly ultrasound and the spinal tap from Tuesday to confirm she has no evidence of disease post-treatment. We're still trying every day to take in some baby food; as of last week I received the authorization for occupational therapy to help her learn to swallow solids. Evidently the brain has a way of storing information without the person thinking about it; it's very likely that she has learned not to swallow as a result of the pain caused by mucositis sores in her gut during treatment. Nana and I brainstormed some ideas such as using a pacifier to help her keep the food in and perhaps seeing if she'll take very very thin rice cereal through a bottle or sippy cup, anything for some supplemental nutrition. I used to think that pumping every few hours for 2-3 weeks was tough in order to keep my milk for her when she was on IV nutrition; it's harder now being her only source of milk since she's not taking much interest in the cup yet and won't even humor the idea of a bottle if I'm within earshot. She's not malnourished or anything, it would just make us all very happy if she could start to gain some weight.

This past week I joined a parents support group of A.T.R.T. children and it has been educational, encouraging, as well as emotional. To hear of the success stories of children surviving 1, 2, 5 years post-treatment - that is amazing!!!! I think it gives us all hope for our warriors. I have to say when we were grieving over Madeleine's diagnosis and just coming to grips with what we were in for, and then learning about her treatment protocol, we put our full faith and trust in our medical team especially knowing that Dr Davidson had comprehensively consulted with the nation's leading docs treating ATRT on Madeleine's condition (Dana-Farber Inst with Harvard, CHOP, CHLA, etc) and really didn't ask about what other types of treatments were out there. Being a part of the group has reminded me that no two children are the same, and what works for one will not work for all. I've learned that Madeleine's tumor (overgrowing her pineal gland) is one of the most rare of the rare, if that makes sense; the majority of ATRT tumors are in a different part of the brain, closer to the skull. So many of the children in the group have undergone or are currently going through radiation, a topic we have had anxieties over in the past. Our docs have come to a consensus that Madeleine is NOT a candidate for radiation at this juncture. The brain tissues surrounding her tumor area are so important to her quality of life and being so young and with so much development left to take place, it's just not worth the consequences now. God forbid she should have a relapse at a later age, radiation may be an option at that time, but of course we continue praying that we'll never have to face that choice. As I mentioned in my last post, these parents are connected beyond acquaintances for the simple facts of our kids, all of us enduring this for their sake, joys and griefs, happy and devastating tears.

Little Madison (Maddie) Star will be honored on Tuesday, 7/17 for her brave fight and inspiring life in Miami, FL. May God rest your soul, little one! and bring peace to your parents.