Day +48

DISCLAIMER:
This is the blog of a mother, one whose love for her daughter is indescribable. It is where I go to vent my frustrations, share my fears and melt down. I am a person who has a positive attitude but finds that can be challenging as I watch my baby on her path to conquer cancer. When I get down I come here to let it go so I can take on what ever is to come the next day. Read with the understanding that my posts are fueled with emotion as I navigate through the obstacle course that life has put in front of us.

And I would like to add a quote that my sister in law sent to me a little while ago, Dr. Seuss sums it up like no other:

“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

With that off my chest I will share with you what was a maddening day. This morning I woke Georgia up to go to our first SCCA appointment of the day, we arrived to have her labs drawn at 10am then made our way to the sixth floor to meet with the dietitian. I was not looking forward to this meeting because Georgia's eating had improved for a couple of days then dropped off again. I handed over her dietary logs from the past several days and waited for her critique. She had hoped that Georgia would be eating more by now... she did say that last week her eating was better and that one day she'd taken in over 400 calories. She weighed Georgia which annoyed me - last week she rounded up to 10.5 from 10.489 this week her weight was 10.385 and she said, we'll call that 10.38... all I am asking for is some consistency because wouldn't you know it, not five minutes later she was commenting on how Georgia's weight was down - um, well yes but did you consider the child has had more physical activity in the past week than in the past two months? I'd say being down .1 kg isn't too bad. She asked me what Georgia had eaten today, I laughed and looked at her, well, I said I had to wake her up to come in so she hasn't had anything. I talked to her about the fact that Georgia has all four eye teeth coming in but that I knew things needed to improve. She said she'd talk with the team and I was left with the impression that she wasn't thrilled with the calorie counts but not concerned either.
Georgia and I made it home in time for her to be melting down as I was trying to shove some food in her mouth before getting her a much needed nap before we had to head back to the SCCA for our afternoon clinic appointment. Brian ended up taking her for a drive to get her to sleep which allowed me a little breather.
Back for our clinic appointment we first met with the nurse and physicians assistant. We went over the uneventful days that we'd had since our last appointment then they went to get the attending, one we hadn't met before. Georgia was done, her dressing had to be changed twice and she was tired so she was wailing by the time the attending walked in the room. I barely heard her introduce herself and as I was straining one ear to listen to her I was trying to ignore the loud crying in my other. The woman had been in the room less than two minutes and was telling us that Georgia would need to have an endoscopy and partial colonoscopy to look for GVHD by the end of the week... I'm sorry, I said.. I missed what you just said.. she repeated herself as Brian said he'd take Georgia for a walk so I could talk to the team. My blood boiling I tried to hear what this stranger had to say... she said that "by day 50 she should be eating"... although I didn't ask I'm curious, where exactly do you get that statistic? You assault these little bodies with chemotherapy, damaging taste buds, making them so sick they physically hurt and you think 50 days later all should be dandy in the eating category? How exactly do you know this when the vast majority of these kids feel so lousy you shove a tube up their nose and down their throat to feed them. I let the team know that I had received three different messages from the three different attending physicians that I've seen in a weeks time... when we were rounded on the final time in the hospital I was told that we'd have a few weeks on TPN.. he said few two times then said a couple.. knowing it would matter I asked the inpatient dietitian would we have a few or a couple of weeks to prove her eating. She said that once we were at the SCCA they'd likely give us 3-4 weeks time. Today I was told that they got the message of one week. I asked several times in the hospital if they were concerned about gut GVHD because of her lack of eating... every time I was told no because she didn't show any other signs... today the attending looked at me and almost laughed saying when you have been doing this a long time like me you know that things change daily... funny, this is the first day that I have heard that eating should be at a certain point by a certain day.
This woman then proceeded to tell me about two different "camps" the GVHD and the non-GVHD camps... the statistic of people who DIE (she actually used this word) is the same... she later changed her choice of words to "the bad outcome" when discussing people having the "bad outcome" from effects of GVHD versus those who don't have GVHD and their relapse rate. She told me that Georgia doesn't have an immune system right now, she may have an ANC but she doesn't have an immune system... So, I asked, what kind of risk is there in taking a biopsy from both her stomach and her colon without an immune system... Good question she said, good question I thought, my god, do people never question you?
She went on to tell me that if they do find gut GVHD that there is an algorithm that they follow to treat it... yes, I thought, I know about your algorithms lady I have come to understand that as being an interchangeable word with patient. Georgia is not an algorithm, she has proven time after time that she doesn't typically fit into them.. her diagnosis, her skin condition, her reactions to medication.
Bottom line is this, look, I get it, you need to determine if the reason Georgia isn't eating well is GVHD because if it isn't you will pull back on her immune suppressing drug. What I ask is this, that you don't walk into the room after one conversation with a dietitian who is not spreading a consistent message and tell me what I will be doing with my daughter. Can we acknowledge that Georgia IS eating, not enough but let's give the girl some credit! Lastly, and I did share this with the team... there is a very small part of all of this where I get to just be Georgia's mom, so what I ask is to be included as part of the team.
I will do ANYTHING for my daughter but that doesn't mean I will do EVERYTHING that someone looking at an algorithm wants me to.
We finished the day waiting for Georgia's TPN to be delivered to the SCCA... it wasn't ready after our appointment that ran long, 5pm the pharmacy said, it will be here at 5pm. We ran a quick errand and were back at 5:45pm.. still not ready, I waited as Brian drove Georgia around.. by 6:30pm we had to leave to keep Georgia's medication schedule so just after 8pm the TPN arrived to our house by cab... at least the pharmacy redeemed themselves.
Hoping for a better day tomorrow.