Tonight though I will share a little about Liz and I will start by telling you that today we did not schedule an OR date for G-tube placement because....she hasn't lost any weight in the past 3 weeks. She's holding at 73lbs (she lost six after stopping TPN back in April). Dr. T's exact words were "we are not in a place where we can stop worrying yet and it is still a very real possibility because she must stay in a safe zone. If she loses any weight at all, we must go ahead with the feeding tube. BUT, go on your vacation feeling good about this visit."
Yay!!
Unless we notice a weight change (and I am NOT weighing her unless I think she has lost) or she gets sick enough again to need intervention, we can wait until July 20th for another weight check and g-tube discussion.
It is difficult not to go to a place where I focus on the fact that she cannot lose weight..."or else", but that weight is so heavy that it is something I can't worry about daily, so I just have to know that we are doing our best and whatever happens, happens. It is SUPER important that I encourage Liz to have that mentality as well. People sometimes don't understand the mental anguish that those who struggle with being underweight face. So very stressful and frustrating.
Dr. T again said how nutrition issues will be something Liz will live with forever, and we just have to find what works for her, whether that be a feeding tube or otherwise. Unfortunately, she is at the age where puberty is starting to hit, and that plays a whole different role in her growth. He again voiced how important he thinks it is for her to start seeing a dietitian regularly and build a relationship with that one person (much like a therapist), so that she can use the guidance of the dietitian while feeling safe and comfortable. In a way only God knows, Dr. T recommended a woman who we actually know, as she attends our church. Amazing! I know this woman is sweet, sensitive and Liz has met her and likes her. To know that the doctor respects her work is just such an extra bonus.
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| Walter and I took Liz on a breakfast date to celebrate her great appointment. All of that food is hers! She is trying. |
I needed this good news today, as I have been struggling with some of my decisions regarding Liz's care. As I have watched her live so "normally" this week, I ironically have been feeling a weight tugging at me, worried that some of my choices may effect her negatively. Today's visit of good news helped ease a bit of that for me.
This week, anchorwoman Robin Roberts announced that she has MDS (myleodysplasia). This has been the top of the list possible diagnosis for Elizabeth for two years. It is what each bone marrow biopsy has been sent on to an outside lab to rule out through cytogenetic and FISH testing. Many times the Hem/Onc doctors have said " this looks so much like MDS". So, I heard Robin's announcement and it struck a chord, and then the following day I picked up Elizabeth's bone marrow slides and pathology notes (to be taken with us to CHLA for their team to look at next week), and my stomach sank a bit again.
It is really difficult to read her pathology notes. In NO way do I mean to undermine the feeling a parent must have when they read a report that includes a diagnosis. Still, it makes me sick to read report after report sighting abnormalities with Elizabeth's marrow.... "such and such is seen, but no evidence of acute leukemia" or "such and such is seen, send for Cytogenetics".... difficult to read.
I PRAISE that no diagnosis is given, please know that I do. I just wish I could read a report where all looks normal and well.
So, Liz had bloodwork done on Monday, and due to lab error, had to have more blood drawn yesterday. ALL of the super important labs needed for next week's appointments in Los Angeles were not processed from Monday's labs. Grrr. Her Pediatrician was not happy and ordered me to take Liz to our closest Lab. I did, and because they had run out of toner, their fax machine wasn't working, so Liz's orders hadn't been received. Because of that, I had to trek over to the hospital with my immune supressed kid, and expose her to all of those germs. It took that lab over an hour to figure out what tubes would be needed for all of the specialized tests being ordered. I was so mad I was quiet....which is never a good thing. I finally asked the Lab techs if I should call the CEO of the hospital and ask her what tubes should be used. Liz actually said " Oh this is not going to be good" when she heard my threat. : ) Bless her heart, she was an angel who waited so patiently for those people to get their acts together, while watching me quietly fume. We'll have to wait for the results of the labs.
The labs that actually were done correctly on Monday show that her Hgb has come up some, which is good and shows the iron supplements are working (yay!), her platelets are down right now (never a surprise due to her platelet antibodies. No knife throwing or trapeeze work for our girl with this platelet count : ) ) and her white count and neutrophil count is down in a yucky area (boo!).
The neutrophils being this low make me nervous, especially because she is now two months out from her last immunoglobulin infusion, so she doesn't have any donor cells floating around in there helping to fight off infection. At least we aren't in flu season, but time will tell what her body will do now that she is fighting on her own. This is one of the decisions I have been struggling with having made.
Tonight I am focusing on the fun week we've had, the way we avoided booking surgery today, and the fact that as I write this our Liz is at a friend's house (totally shouldn't have let her go be around a room of 10 preteen girls, given her ANC, but I just had to give in this time).
Carrying a bit of weight on my heart and mind, but life is so good.
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