Monday, May 27, 2013

GVHD to be downgraded

Good Evening,

First and foremost, our apologies for taking so long to post these updates!

Here is the latest, to the moment, update and we'll try our best to keep it going on a daily basis again.

Xander's GVHD of the gut will be downgraded tomorrow to grade II. This is great news, as he has been able to meet the guidelines set forth for I's and O's. He has hardly had any water via mouth however, only broth, tea and gatorade. The path to getting him eating 1400 calories is now looking much better. We are slowly and methodically going to get there. Xander is doing a great job managing his hunger, which 2 days ago, he called starvation. He said for once in his life he now knows what it is like to be starving. For real, he did not have any food by mouth for 4 whole days. Indeed he was starving.

To make sure that he wasn't "academically" starving, he has been on TPN-Lipids now for many days. This allows his body to receive the bare minimum to keep running. This will start to taper down in quantity as we move through the upcoming week.

Xander's GVHD of the skin is cleared to just 5% remaining, per Dr. Connelly this morning. His skin looks great compared to a week ago, and is responding to the steroids well. He now has to have very thick moisturizing lotion applied by the tablespoons full. This is to help prevent the drying out and reduce the infection risk. Aaron has a very nice method worked out to apply this lotion, of which I would not be good at after seeing it first hand this morning (there is a bit of torture involved - ha ha).

Xander's CMV count did creep up also during the past few days as everyone expected. When last checked it was at 817. This is very low for you and I, but for him can cause a systemic infection very quickly. Because of his intolerance of Foscarnet, the Docs decided to give him Ganciclovir instead. This drug is also harsh. One of it's major side effects is lowered blood counts - we surely don't want that to happen. So far, so good. But this is literally day by day also. They will use trends, but a trend down in this case is very serious. We are watching and they are watching very closely. If and when they do have to change him off the Ganciclovir, they will move him to IV Foscarent twice a day (ugh). That means bolis' on both sides too. Just hours more of pushing Xander each day if this is the case and helping him get through the nausea and vomiting that he had trouble with last time...

In regards to ECP - called photopheresis for short, will begin on Tuesday. He will undergo three treatments next week and more the following week. We will report on the full details of this adventure as we go through it. It sounds very promising for getting him off the steroids sooner.

We have been talking a lot about stools and ounces in Xander's room. Thank goodness there have been other things too!

We have been blessed by many friends visiting over the past week, most of them playing Minecraft with Xander (which I really stink at so it is good to have someone else play)! This has really helped Xan pull through and has helped the days of starvation go by more quickly. Thank you to all of you (Evan, you are so sweet to shave your head, it makes me smile every time I see you).

Elli and Xan

CC's first ever game of Minecraft (Janice *helping*)
We felt especially blessed to have Calisa and Gary perform with their ukuleles (first ever performance together) "Don't Worry Be Happy" - it was so very sweet and made us cry, too. They will really need to perform this for the whole class soon, it was just lovely.

Gary and Calisa

Thank you to Amy and Markus who have helped Xander center himself and assist him in finding his inner strength to get over these hurdles. All our love to both of you. Thank you!

Dr. Gibson, you always provide relief and this week was no exception! Thank you for bringing him out of the pretzel shape post-op and a much needed follow-up. He would be in much worse shape if it wasn't for your help. Thank you!

ooooo, that hip is 1/2 an inch out (post op)

All of you that have brought us dinner - we have enjoyed them very much - and it seems like the days are perfectly picked as our busiest ones! Thank you!

To those of you that have donated to Xander, this has made our lives much more smooth. It has lowered our stress level significantly. Really. A. Lot. Thank you! Our donation site is doing very well and we are getting very close to our goal.

And, to all of those that aren't in those groups, that have shown their love, compassion, care, prayers, hopes and thoughts - we thank you and are grateful for each and every one of you.

Oh, and you nurses on 7 East - simply put, you're the best.

An original spirograph (no pins though, just putty)

Peace and Love to all of Xander's followers,


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