We still have no clear-cut answer about what it is that is the main cause of Elizabeth's issues. I want so badly to have a simple and clear diagnosis, tied up in a pretty bow with a "take this pill and all will be well" order from the physicians (or better yet would be to have all doctors tell us nothing is wrong at all). That just isn't happening. If I hear one more time how uncharacteristic she is or how complicated she is, I may throw a fit. The truth is that one main thing is causing all of the other things, and they just need to find that primary thing.
We heard many things, many possible diagnoses, again yesterday. I have learned not to freak out about any of them because she fits the mold for other things too, yet hasn't tested positive, and if I panic at each one, I will go crazy. Crazy is not allowed : )
She had 17 (!!!) tubes of blood drawn yesterday to run more tests. There are a few things that, if they come back a certain way, we will have more direction. So again, we will wait.
One positive that I took away from yesterday is that the CHLA Hem/Onc feels strongly that her bone marrow issues are not a primary diagnosis. That is to say that "her bone marrow abnormality/lower function, is very likely being caused by a primary nutritional or immunity issue." We left all of her biopsy slides there and the team will look at them under microscope and discuss and then report their findings.
I am starting to get into details that I don't want to right now, so I will stop. Know that though Liz has been very sick and is still considered fragile with a long way to go, I absolutely found positive things in yesterday's meetings.
If you are still praying for Elizabeth and following her story- thank you. I know that my blog entries have decreased, but please know that we are grateful for each prayer and for every person who thinks about her and hopes for her complete health.
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| Liz is most at home at Miller's, but her second favorite hospital is CHLA because.... there is a McDonald's inside the hospital AND a butterfly is their logo. |
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| Our first appointment was at 10:00, and we had hours until the next, so we walked over to Acapulco. I never allow Liz to eat at buffets because immune suppressed patients shouldn't and because of her gut issues. Because we were the first and only guests, and because the buffet had just been put out, I allowed her to eat from it. (Holly, I can hear you sighing!) She ate SO much. We joked that because she weighed as much at her second appointment with her shoes off as she did at the first when her shoes were on that she ate as much as her shoes weigh. Hours later, she got super sick and dry heaved for 40 minutes, so she won't be doing that again. |
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| Precious, precious cargo. Isn't medical science amazing?! Liz is literally holding samples of her own bone marrow, from her four biopsies. Wow. |
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| I LOVE this photo. Neither one knew I was taking this picture, as I was paying the valet when I looked over and saw them like this. Her face speaks volumes. Walter was trying to distract her from her horrible stomach pain and retching, and he undoubtedly was telling her silly and immature things at my expense, but I just love how content she looks in the comfort of her daddy's arms. |
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| Leaving after a 6.5 hour day. Elizabeth is so amazing and tolerant, I am struck by her attitude every time she endures these long days of appointments, pokes, prodding and lengthy discussions. After the long day and feeling so sick, she had had enough and totally out of character asked to be carried. The security officers and valet guys offered her a wheelchair as they watched her retching, but she looked at each one and said "I'm not sick!" : ) |
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