July 8, 2008: Allergic to what, exactly?
The biopsy results came back today, delviered by heartful hematologist.
So let’s start with the good news, which is that Haley does not have GVHD of the gut. This is excellent news for the reason that she would have had to resume the Tacro, and possibly go on steroids while it worked itself out.
The other good news is that, as of yet, there will be no feeding tube.
Which leads me to the not-so-good news. Although I haven’t had a proper conversation with her yet, the gastroenterologist (gut doctor) suspects an allergy, of all things. which begs the question: allergic to what, exactly? Except for the milk, which may or may not be the culprit, the girl eats potato chips, life cereal, and soup. Oh, and just started with the lollipop. There is nothing to get allergic from (besides red dye, but the timing doesn’t jive since she’s had stomach issues for a very very long time). She doesn’t eat eggs, peanuts, honey, exotic fruit, or yellow no. 5. She does eat wheat and milk though, and unfortunately that’s the bulk of her diet.
And now for the temporary bad news: for the next 6 months, Haley has been instructed to eat only a pre-digested formula. No soup, crackers, cereal, potato chips, milk, etc. Only yhe formula. Of course, before I send my child on this diet without a confirmation of allergy, I will be talking to the gastro doctor, as well as her bone marrow doctors up in NY. Perhaps they’ve seen this and can offer a different exlpanation, or at the very least see if her donor was allergic to anything she’s currently eating.
Will keep you all posted in the coming days.
In the meantime, Haley continues to smile and giggle her way through the days, almost as if she remembers the days when it wasn’t so easy to smile. She did frown when I told her that Brett Favre might come out of retirement and quarterback again for the Green Bay Packers … she thinks it’s a big mistake.
As always, thank you for the continuing love and support from everyone. It means a tremendous deal.
I’m so relieved to read this about GVHD. So relieved. An allergy just seems less serious to me, right? I like the idea of giving her system a total break with something that is pre-digested. I’m not a doctor, but it just makes sense to me that her system may still need a break from working after what it went through. Keep searching for the answers, I know you will. Dana
July 9th, 2008 | #
Haley continues to charm us with her happy delicious demeanor.We’re all relieved it’s not GVHD. I know Tansy/Jordana and Ranan will continue to move heaven and earth , to get to the underlying cause of Haleys’ eating problems.So far, they have given Haley all the love and support that there is to give; and it shows! Kudos to big sister Anna, for also giving Haley great hugs and kisses, and being the best big sister, ever.
Love, Kisses, Hugs
Grammy
July 9th, 2008 | #
Haley continues to charm us with her happy delicious demeanor.We’re all relieved it’s not GVHD. I know Tansy/Jordana and Ranan will continue to move heaven and earth , to get to the underlying cause of Haleys’ eating problems.So far, they have given Haley all the love and support that there is to give; and it shows! Kudos to big sister Anna, for also giving Haley great hugs and kisses, and being the best big sister, ever.
Love, Kisses, Hugs
Grammy
July 9th, 2008 | #
leave it to grammy to leave two computer messages. sorry. I love Haley and Anna so much, I had to write it twice!
Signing Off,
Love, Grammy
July 9th, 2008 | #