1 Year + 220
1 Year +220
The similarities between the memory two years ago (see below) and this week have too many parallels. This was the first week home on hospice and all that went with it. Emotionally, I was feeling similar things this week with even similar physical challenges for tate. But two years ago I recall feeling overwhelmed with trying to balance teams and this week I really felt like we were alone on an island. There was zero communication this week. No responses to my messages or emails from Tates team. It’s so easy to listen to the ugly whispers that fill the silence. I’m really fighting hard against that. Tates team really is so caring. There’s just so many players and really nobody currently has any answers to take on a leadership role. As “fixers,” I’m sure thats frustrating for them too.
I did finally hear back from her pain nurse today. As long as insurance comes through, the admission for the pump trial will be as early as Tuesday. We just really are anxious to know that this will help to move towards the actual pump implantation surgery. We are desperate for some relief for Tate. Tremors and night sweats are back. Tate has a new ulcer and migraines and body pain are worse again this week. She is still scheduled for a brain MRI on Wednesday. Our pain nurse, Paul, is amazing and is now trying to coordinate it with Tates admission.
So far, outside of colorado, promising leads have had us in contact primarily with a geneticist of rare diseases at Mayo in Rochester. She has her colleagues reviewing Tates chart to see if they feel they can help. The NIH has been a little quiet so I’m hoping they have a fit for Tate outside of/in addition to the MT8 study and we’ll hear something soon.
2 Year old memory: pre Bone Marrow Transplant
Friday was a week at home. A long, long week! Hospice has been attentive and provides great care, but the balance is tricky. Their job is to treat the immediate without regard to the future or the “why” something is happening. Tate developed urinary retention from the morphine-unable to pee…at all. Hospices solution is an indwelling catheter. Not okay. Our solution is to find a better balance of narcotics. Chest pain from the esophageal ulcers increased the end of last week. Hospices solution is to increase pain meds which makes problem #1 worse. Our solution is anything else….non narcotic meds, ice, heat, cold drinks, warm drinks…sleep. It’s exhausting and frustrating to be balancing different teams with different goals. We’re working on the balance. We’ll get there.
Tates numbers measuring gut inflammation are very slowly trending down. Still at 1200 (down from 1900 over a month ago. normal high level is 77,) but seems the rheumatology infusion called remicade may be helping. She’s due for an outpatient infusion on Thursday. Insurance letter came yesterday stating they’ve denied it. It’s expensive. The lack of big picture awareness from insurance can be infuriating. Thankful for a solid team that I trust will get on top of this for us.
Still working on getting off the steroids. As anyone knows who’s had to be on high levels of long term steroids, there’s a definite love/hate relationship. Add in 14 year old body awareness and self esteem and the effects are brutal both physically and emotionally. Praying we can get off them soon to give Tates body a chance to get back to her baseline before she’s hit with them again for transplant.
Thursday is a big meeting including the Seattle Dr’s. They’ll settle on the new immunosuppressant they want to add and hopefully get everyone settled on a definite plan. Praying this will help not only with ulcers healing and preventing new ones but slow the progression of the joint and body pain. The body pain, joint pain (especially her left knee) and migraines continue to progress. As does the nausea and general feelings of being unwell.
This transition home has had some blessings but has been really really hard. There’s been multiple days when I long for the comfort of the hospital and familiarity and friendship of the nurses and Dr’s that know Tate and who we trust. Never dreamed I’d feel this way. But, we persevere. I tell myself a hundred times a day that this is temporary as I plead with God to give me some kind of obvious direction to make the current “right” decision. Because he must know I’m too emotionally exhausted to pick up on anything subtle.
Tate spends most of each day fighting sleep and mostly losing that battle. But it’s a reprieve that she didn’t have for weeks on end in the hospital, so we are grateful. It’s restless and brief, so nights are still long.
We continue to receive cards and the occasional package for Tate. Thank you for the love, prayers and encouragement! It’s hard to imagine that this is her “easy” stretch in this. Praying for strength and optimism as we continue to keep stepping forward.