Friday, May 20, 2011

Day +128: Oh how time passes

Hello everyone. We obviously haven't been keeping up too much with the blog lately. Instead we've been trying to focus on life at home with a 1 year old and trying to be as "normal" as possible. We will try to keep folks updated, because we know a lot of you have an interest in Clara's story.

First of all, her disease status currently looks to be in a good situation. On her latest chimerism reports she is 99% donor throughout her marrow and blood which is an excellent place to be at this point. This test is +/-3% so this is nearly perfect. She hasn't had any infections and has been slowly weaned off of her anti-fungal medications. She is no longer receiving IV therapies (except for monthly immunoglobulins) and will hopefully have the central line removed soon. The hold-ups on removing her central line are 1) the doctors want to scan her again to make sure the fungal infection didn't come back after we stopped the last IV anti-fungal medicine and 2) they are worried about blood access because her veins are small and they currently need labs once a week. The first concern will be addressed on June 6 when she has a MRI/CT to check the status of her previously infected areas. If everything looks fine, the vascular access team will determine if she can handle pokes once a week. Removing the central line significantly reduces risk for infection and will allow us to go more than 20 mins away from the hospital!

We, of course, are not completely out of the water yet. Clara is still very immunosuppressed and can't go into buildings or have visitors. She has to wear a mask going into and out of the hospital still. And, of course, we are eager for the 2-year mark at which point she has a much lower risk of leukemia relapse (a long time off!). Hopefully her immunosuppressant drugs will be weaned sooner rather than later to also help reduce the risk of infection. The doctors have been "in discussion" on being more robust regarding the rate and amount at which we are weaning.

Clara has actually started growing a bit! She is still pretty low on the growth charts but is ~8kg (~17.6 lbs) now. She is also starting to make progress in eating. She will now voluntarily chew on things (crackers, eggo waffle, banana) and recently had success drinking from a cup and a sippy cup. Here is a post Brooke made on facebook today about her eating milestones:
Clara stole my grilled cheese sandwich!!! :-( ... :-)
She was across the room from me when I sat down on the chaise to eat it. Made a bee line for me (crawling) and stood up to assumedly get to me. She had been snuggly all day.

I offered her a lick as I try to always do and she went at it with a sucking bite. So I hefted her onto my lap. She took it from me and gummed at it -progressively licking off the butter and the oozing cheese. Fortunately the cheese acted as a glue to keep the bread from breaking off into pieces she didn't actually want in her mouth (and that she wouldn't be able coordinate to swallow). But it wasn't too much cheese to cause a choking hazard of its own.

After having had a phone conversation with OT only a couple hours before, I knew she needed some water which she trusts and loves to help her organize the crumbs that were bound to accumulate in her mouth into a swallow before it got too big. Lately the crackers she has been gumming have stayed in her mouth and not actually been swallowed.

She went back and forth between the water and sandwich. Like a normal kid. Slowly working the sandwich into a more and more soggy sandwich. Of course it is breaking off into crumbs and bits and, for the first time ever, she noticed the crumbs and bits on her fingers and put them INTO her mouth. And she didn't spit them back out. They were the size of what she was scared of yesterday. Yesterday!

It was amazing. I was so proud. She always has these leaps of progress after I have a conversation with OT. We are getting there!!!

Finally, I would like to close with a belated "thank you" that so many of you are deserving. We have found our lives to be too busy to remember to thank you every kind word and generous act over the past months but every one of them was seriously appreciated. Those of you who sent clothes for Clara were the sole providers of Clara's attire for most of her treatment as we never had a chance to shop for her. Those of you who sent gift cards allowed us to run across the street to the nice grocery instead of spending more time away from Clara. Those who sent cards kept us reminded that there were others thinking and praying for us to help us pull through. There were many other gifts including food ( all gone), a pillow (still in her bed), stuffed animals (two of her favorite toys), books (which she really is starting to enjoy), a quilt (which she still sleeps with), a king cake (happy Mardi Gras!), and many other tokens of love that I am sure to be forgetting as I sit here late at night many months later. Thank you all for the love and support and I hope that we can all look back at this in amazement as she continues to improve and lives a long happy life knowing that so many people care for her!

1 comment:

Mom/Mimi/Mama Deb said...

Beautiful! Loved the grilled cheese story and also the perfect expression of gratitude that I know you both feel so strongly. Well written and obviously heart-felt. XOXOX

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