Day +10: The Worst of It (We Hope)

Things are a little tense here at the moment, we’re trying to get through what we hope is the worst of the entire process. We’ve been told for awhile now that around Day +10 we’d see the worst of the mucositis, the worst of the post-chemo struggle, the worst of the fluid retention. That seems to be where we are now.

Zoe's Lounger

Doctors are still feeling very positive about Zoe’s progress. She’s handled everything really well, and her mucositis has not been as bad as it could be by any stretch. She doesn’t have any sores in her mouth right now, just redness and irritation.

She is definitely uncomfortable though. Her pain medication (Fentanyl) has been upped a little more to help her get through this phase, and that has helped with both her blood pressure and her comfort.

The primary concern at this point is the fluid retention. Zoe is noticeably puffier, and we’re trying to let her spend as much time as we can in an upright position to make sure fluid drains well and she can breath without supplemental oxygen. Her oxygen saturation levels are still good, so we are keeping fingers crossed she’s not going to need a tube.

Zoe’s Creatinine, which is a marker for kidney function, has gone up to 0.6, which is significantly up from the 0.2 or 0.3 where it’s been stable these last weeks. We are assuming that that is because of the Lasix she is getting for fluid retention, but we haven’t heard confirmation of that just yet. There are other options for fluid retention that are less hard on the kidney, so we may see a switch to one of those today. We’ll know more later on, we tend to see the docs around 4-5pm most days.

If this is the worst of it, and it is the worst so far at least, then we will be relieved. If on the other hand things continue to get worse as they have these last few days, then we’ll be more nervous. I know from reading the stories of other families that getting through this period is really hard but that it does end, so we’ll just try and keep our eyes on that end of the tunnel.

Almost there.

Update: Feeling a little calmer after a visit from Dr. S. He was excited when he saw her, where I have been very nervous. Turns out he feels that her current condition is the beginning of engraftment — fluid retention, pink-ish flush on the skin. This is a very good thing if he’s correct, and I trust he is. He was not concerned with anything, he felt Zoe doing well since she does not need oxygen at the moment and is flushing out the fluids well so far.

Flushed & Feeling Yucky

Fever rash engraftment, fever rash engraftment — say it as fast as you can, try to keep that in mind”, he said.

We’re likely to see fevers, which can be quite severe, and skin rashes which usually start on the hands if she has them. The rashes are signs of GVH, or graft vs host, and are expected to some extent. There are multiple variations of GVH, most of them mild.

So. We’re upping her Lasix to 3x a day to keep ahead of the fluid build up, we don’t want to “fall behind” on that I’m told. We have canceled her antibiotic, however, since her line cultures are all negative and that medication is contributing to her higher creatinine.

The nurse coordinator who brought us in and took us step by step through the first stages of this stopped by yesterday, it was good to see her. She’s been following Zoe’s numbers each morning, and she was very encouraging.

As she started to leave after we had spoken for awhile, she turned and, smiling, said, “Don’t hold me to it, but I think you might get a little July 4th present. I think we might see a tick up in Zoe’s WBC count.”

Let’s hope she’s right!

Temperature Scare & Other Notes

The day started off very poorly, around 5:25am Zoe’s temp dove to 95º. She began her first chemo medication, the Dexamethasone, which broke her ongoing fever fairly quickly. We had been keeping her only lightly swaddled and unwrapped when her temp was high, and after the med she apparently went from too warm to very cold as a result in part of the exposure. We do wish that it had been discovered more quickly — the nurses had been taking her temp every hour prior to the medication but for whatever reason they didn’t come in for several hours after it’s administration.

After some time of being swaddled with warmed blankets Zoe’s temp creeps back up to 96-97 and hovers there. Fear of infection has set in so they need to draw blood, however her veins are limited at the moment so instead they will put in a catheter to take a urine sample and minimize the blood needed.

5:45, Transport team from Neonatal Intensive Care Unit (NICU) arrives to do a blood draw, nurses on our floor have been having some difficulty and felt the transport team could work better with difficult veins; after a few minutes Transport has gotten the needed draw with minimal pain to Zoe, much quicker than the time spent trying prior to their arrival; relief.

9am, we’re moving to the intermediate pediatric ward, also know as High-Acuity, where they have few nurses per patient and will monitor her constantly until her temp has risen; can’t move to Hemo/Onc ward until a bed opens up, this is an intermediate preventative step after the temp scare due to poor oversight

1pm, visit from Dr. M to check in; Zoe’s Hemoglobin is 8.1, Dr. M says his threshold for a transfusion typically is 8, however because he feels it might help Zoe feel better he orders a RBC transfusion this evening; Zoe is now getting the first two drugs in her chemo regimen the dex and cyclosporine, as well as two of what Dr. M calls prophylactic measure to ensure there is no risk of infection, an antifungal and an antibiotic.

Dr. M introduces us to Ferritin, a protein that stores iron and has become a marker for HLH the more the disease has begun to be understood. Zoe’s is currently 3000, in a normal infant it would be 100; there is no risk from the Ferritin itself however it tends to show evidence of the disease activity. Coming down in Ferritin count is a good sign, the opposite is a worrisome sign.

We also briefly discussed genetic testing. Zoe’s has been sent but can take weeks to return, if she returns with markers for the disease (indicating she likely has FHLH) then we will have Maya tested.

11pm, blood transfusion begins, will last 3 hours; temp down to 96º again, was holding at 98º for awhile

1:15am, heart rate drops below 100 consistently — nurses feel she is probably just a little cold, but wrap her in warmed blankets to ease our concerns

Remainder of the night passes without incident.