Snakes, Trains, T-cells and Pakistan

I LOVE Trains!!!

Thursday evening we had the pleasure of going to the Cincinnati Zoo with another family staying at the RMH. Abdullah is 3, a few months older than Zachary. He and his mom and uncle came all the way from Pakistan so Abdullah could receive care at Cincinnati Children’s. Yes, the hospital is that good! I am always amazed at the distances that families travel to come to this hospital.

Anyway, the zoo was hosting the Festival of Lights, we had planned on going, and invited Abdullah and his family to come along. Abdullah and Zachary are both a little fixated with trains, so riding the train was high priority. Elephants and snakes were also on the agenda.

Jonathan is obsessed with snakes, has been for awhile. In fact, I told him when he’s 10, he can get a pet snake. That was over a year ago and the obsession lives on. Unfortunately the reptile house was super crowded and we only got to sneak a peek – but it was enough for Jonathan.

Snakes and trains, it’s a wonder what kids latch on to. Which brings us to Jacob. He announced that he would like to visit Abdullah and his family after they go home. (Which should be in a couple weeks, GO! Abdullah!)

So Jacob is planning trips around the world to Pakistan. Of course, Sinoma (Abdullah’s Mom) did welcome us to come visit. I’m sure Jacob will venture around the world someday. Most days it’s difficult for me to think about future plans when I so rarely see the outside of these hospitals walls.

Speaking of, I’m always amazed at the differences between doctors. Last week the BMT attending had a “wait and see” attitude. This week there is a “destroy amd conquer” mentality. Of course, I think the “wait and see” lead to the “destroy and conquer”. 98% of David’s T-cells were activated, which meant in all likelihood, they are donor cells, not his own. So campath was administered on Wednesday.

They’ve gone back to the infliximab and basiliximab twice weekly, along with campath as deemed necessary. The BMT attending announced this morning that we may need to re-evaluate how David is being treated. He’s been on high doses of steroids for almost 4 solid months now and he needs to come off of those.

We’ve been trying to kill off his lymphocytes, but they keep coming back. The BMT attending scrutinized his CT scan from Sunday and sees enlarged lymph nodes in the general area of his liver. She thinks this is why we can’t get the upper-hand on the GVHD, his new liver is still producing unwanted lymphocytes. There is a more potent level of drugs that will destroy eveything, not just the lymphocytes. Total eradication is now on the table.

As always, there is more. The leg PICC that became infected just days after insertion, is infected again. We don’t know yet if it’s the same bug or something different. It may need to be removed and replaced, again. It may account for why he’s suddenly running fevers, again.

*Sigh*

At least we’re making some good memories while we’re here.

I wonder where Jacob will want to travel to next.

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Categories: Life | Tags: , , , , , , , , , | 5 Comments

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5 thoughts on “Snakes, Trains, T-cells and Pakistan

  1. I’m so glad you got to have a great day out. I wish you and your family all the best for 2011. May this be David’s year!

  2. Hi Sweets,
    Wanted to drop by and let you know that I’ve been thinking about you and your family – the troupers that you all are. Wishing you the happiness and health that you so deserve!

    xo.

  3. Sairah

    Amy,

    Glad to see you got to get out and go to the zoo! Still thinking and praying for you guys! Btw, did you know that my heritage is Pakistani. 😉

    -Sairah

  4. Hi, I’ve been reading your blog for a few weeks now, while I never have left a comment before, I have always been thinking of, and praying for you and your family. Especially for David. I am local to Cincinnati Childrens hospital, in fact my sons cardiologist/neurologist and speech therapist are all based out of the Cincinnati Childrens Hospital. Those are some amazing folks down there! If you ever need anything, I am always around.
    {{hugs}}

  5. Glad you got out to the zoo! And, I LOVE your son’s desire to travel to Pakistan to meet up with his newfound friends!!

    I hope some new good things come out of the “destroy and conquer” approach toward David this week!

    Veronica 🙂

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