First things first, the Light the Night walk was an amazing experience. I have big, big plans to do a post about it but that wont be tonight. Also, Chad and I were able to take a weekend trip to New Orleans last weekend and again, big big plans to post about that one too. But...
Tonight I was just going to do a quick update. Piper is doing well. I say "well" instead of "wonderful" because things are still ehhh sometimes. She is not walking and I am worried that there has been some sort of muscular or nerve damage. On the other hand, I have been told that Maintenance should be different and that she should begin to catch up. As of right now she is still extremely picky about food, losing weight, not wanting to walk or be anywhere but on my hip, and does not verbalize much. She is signing some words (eat, milk, water, more, hello) and she will eat the heck out of one or two foods at a time. Seriously, right now she is digging cheddar cheese popcorn and vanilla yogurt. More than anything it is a frustration rather than a worry. I spoke with the social worker at the clinic on Wednesday and she began the paperwork to begin Piper on Babies Can't Wait...a program that caters to children with either disabilities and/or delays. Piper more than qualifies and we now await a call and a consultation. Hopefully we will be able to enroll her in oral therapies, for speech and eating and physical therapies, to strengthen her limbs. And that is that.
Piper was supposed to begin Maintenance on Wednesday, but her platelet counts were too low and she was delayed until this coming Monday. She is off all chemo until then and while that is a blessed little break, it only delays what we are eager to begin and someday, end.
Next Mondays chemo appointment is a little more in depth that usual. Because she is being sedated, she is unable to eat anything after midnight. She (blessedly) will get the first morning slot and will be given propofol to enable her complete sedation in order to be administered chemo into her spine. It is 2 (methotrexate and cytarabine) types plus a different type (vincristine) into her port. When she awakens she will be allowed to eat and drink and get the heck out of there.
Throughout the next 11 months of treatment she will have this sedation chemo every 3 months. Instead of visiting the clinic weekly or more as she has since her diagnosis she will only be there once monthly. Each month at her visit if she is not getting sedation chemo she will get a simple chemo push (vincristine) and a count check. Each clinic visit will follow by 5 days of twice daily steroids. At home she will continue with nightly 6mp and weekly oral methotrexate. While this sounds like a lot, I am told that Maintenance not only is a good milestone to achieve but also a chance for Piper to begin feeling better.
I just don't know what to expect so I am just rolling with what I do know. We need some prayers. Its been an amazingly rough year but I know we are blessed to have Piper come through it relatively unscathed. The worst is behind us but I need the wisdom to discern how much to "cater" to Pipers moods and how much to encourage her to become independent. Linley is doing wonderfully but I know she wants and needs more consistency in her world. Hopefully this is the beginning of yet another new normal for the Needham crew. And hopefully it is going to be a GOOD new normal.