Wednesday, July 17, 2013

New Blood Type

Good Morning,

Day +78

Xander has been making slow but steady progress. He is now down to 15mg of Prednisone daily. We have a good rhythm worked out for getting this taken early in the morning. One of the major side effects of the high dose steroid use has come to be a problem for Xander, that of the degradation of the skin. This started early last week and was really a problem by Wednesday. Luckily, we had scheduled an initial consultation with a new PCP for that day. She gave us a great recommendation of applying Mixed EFA (Essential Fatty Acids) oil to his skin twice daily after a shower. I have been applying this since last Thursday and it is obvious that we have been successful in greatly reducing the spread and lessening the symptoms of the existing cracks and sandpaper like feel. The redness has almost completely subsided. From a GVHD perspective, he is clinically considered "GVHD 0" as in - no more skin rash! His skin is producing new, healthy cells and he is not getting infections (thank you Oxford Kids Foundation). He continues to be treated with HBOT daily.

I'm not picking! Thanks Dr. Morgan

His gut GVHD is still bothersome and we still have to limit the food that he eats. This irritates him greatly and us too, as we have to say no more than yes. We still have a long way to go on this one. But, we found a new way to make his L-Glutamine intake better, using fruit smoothies. Last night he drank a 16oz smoothie with 15g of L-Glutamine in 10 minutes. That is really great for him and gets the fruit servings in too.

We are excited to report that as of today, Xander's blood type is now A positive. This means that the CD34 cells are working properly and that there are more A positive cells in his peripheral blood than O positive. We are so happy that he has reached this milestone!

Molly's 7th Birthday on Sunday was sweet and low key. If you recall, we had a party for her in June, and that worked out great, as that was not on my agenda this week. We got Xander's HBOT therapy in early that day, so Molly and I took a bike ride in South Lyon. She is a great rider! She only complains a bit up big hills and likes to do the off-road jumps too.

Birthday ride

Physical Therapy is very important for Xander, in any form. He has free weights in his room, he takes walks and most recently, he rode his bike for the first time in months. Molly wanted to go for a kayak trip down the rapids for her Birthday, but Xan wasn't up for the kayaking part. So, I rode with him while Aaron and Molly (and Hobbes of course) went on the kayaks. The B2B trail from Argo to Gallup is perfect, NO HILLS... except for this one, which he conquered.

Fulfilling the fantasies from the window on 7 East

Fuller park area
Physically, Xander is in need of a lot of exercise to get healed. Walks are difficult and tiring for him, but we all know how important they are. The skin is so irritated that just moving it hurts him. As of today, he is experiencing this the most on his ankles (irritated with every step!). The skin is just like sandpaper.

On one of our walks earlier in the week, we were fortunate to run into the Caroline and Maureen. Caroline was also a patient on 7 East that is now in remission, and a student at the Steiner school. Great to see you and happy you are doing well!

Fun on the river

Molly found fast fun at the BMX bike park after our walk. She crashed once, cried a bit, but got right back up and went for more. If it wasn't for the mosquitos, she would have stayed all night.

Getting good on the bike

Xander has needed to take a lot of naps. Apparently, Hobbes can't wait and has decided to make himself comfortable. What an adorable pup!

Hobbes turned one year old in June and is about 95 pounds
Thank you to all of our the families bringing us meals, it is always a wonderful surprise and treat to see what you all come up with! (My cooking is very boring most of the time)

Just one more thing.... if you haven't donated blood lately or ever, will you please take the time to call today? While at transfusion clinic this morning, we learned that the hospital has NO PLATELETS to give the children. We are so thankful that Xander doesn't need platelets right now, but that could change any day. Please help, today. Call 1-800-RED CROSS - they can schedule you an appointment at your local donation center (for us here it is on Packard in Ann Arbor). Seriously, the blood you donate today, will be used immediately. All of the children and parents are forever grateful.

Peace and love to all of Xander's followers,


1 comment:

  1. Hi you all!
    Thank you so much for the full update. Xander, we are so happy that you have reached the blood type milestone!
    We're sorry that your skin is causing you so much grief and we hope the mixed EFA takes care of that really soon.
    We are so impressed that you were able to go on a bike ride already! You are so strong, you constantly amaze us!

    Jasmine and Margo