Mtx Round 2

Well, the winner is still undecided. Hope seemed in control early in this bout. She came in Thursday in good spirits and promptly determined that Wavy Ranch potato chips would be her food of choice.

She kept it up to the tune of 3 bags a day - Thursday to Saturday - with an occasional chicken tender on the side. It was the most enthusiastic eating we had seen in weeks and we were delighted with each fat-laden bite! She insisted on frequent field trips "downstairs" and laps around the unit to visit the laundry room, the kitchen, and the nurses' station. Each day she seemed stronger.

But Sunday, right after the docs' rounds with a promise of an early evening discharge, she winced and cried out while trying to enjoy her second bag of chips. By bedtime she was back on morphine with a bunch of visible mouth and throat sores. 

But today it feels like neither side is willing to back down. Hope has insisted on eating all day long - ham, turkey, and cheese and crackers. (She has met the Lunchable and is delighted by it. Ugh.) But her energy has been low, spending most of the day in bed. It felt like something was brewing... or that damn mtx was winding up for a sucker punch. 

Fever of 102.5. So antibiotics, blood cultures, urine sample. And we wait to see what's next...

T minus 45 hours

We are home!

 

The final hurdle ended up being Hope's ability to regulate her glucose level after such a long period of IV fluids and no food. This morning the docs were satisfied and let us decide whether we wanted to just stay until Wednesday or go home for a night. The transition isn't easy for her, and we are a little worried about her ability to stay hydrated enough and eat enough to keep her blood sugar up. But in the final analysis, we picked home. To be all together and sleep in our own beds and take a real shower/bath.

And once we got here they called to move our readmission to Thursday. Yippee! So we had a total of about 45 hours of home life to enjoy. (Current status is T minus 38.)

Round 1 drags on

Day 10 and counting... 

On morning rounds the oncology team said we should try to push Hope a bit and see if we could go home today. She needs to be able to get off the pain pump and eat and drink just enough to take oral pain meds. (They can send her home on IV fluids if needed.) So we turned off her IV nutrition and fluids to see if she would drink and try to eat, and turned down the morphine pump. A few hours later she was in pain, had taken two sips of water, and shown zero interest in eating other than holding a bagel in a death grip while napping.

Morphine and fluids are running again. Some ice water has seemed moderately interesting in the last half hour. We'll try again tomorrow. Still hoping for a few nights at home and to get a few good meals into her before we face Methotrexate Round 2 on Wednesday.

Methotrexate, round 1

Much to everyone's surprise at clinic, Hope made counts Wednesday and was able to start the third phase of treatment. It was a looooong day: no eating or drinking because of her spinal tap with chemo that didn't happen until noon, and then a wait that lasted until 5 to get admitted on the inpatient side. But a much bumpier road was ahead.

They started her first (of four) 24-hour intermediate dose methotrexate infusion at about 10 pm. As anticipated she didn't eat all the next day, probably from the nausea, but she was in good spirits for the most part. 

Friday she still wasn't eating and started indicating that maybe her mouth was bothering her, and Saturday we saw a steady deterioration in her mood, energy, and wellness.

By Saturday night she had a full-blown case of mucositis, the most common and nasty side effect of methotrexate, and one that is even more likely for people with Ds. It's inflammation and sores in the mouth, lips, and throat. And for Hope it has been accompanied by a croupy cough that made sleep last night impossible without two nebulizer treatments and a dose of steroids - and morphine. 

Today we have a pain pump giving her continuous morphine and a button we can push if we think she needs more. It is helping but she can't drink, let alone eat. They will probably start IV nutrition tomorrow. So our 3-day stay has turned into at least 6 and likely more. 

Incredibly we have to do this three more times in the next two months, but we heard today that her dose will be decreased by 25% next time.

At the moment it feels like methotrexate won in round 1, but I wouldn't count her out just yet. 

The days between

Hope was discharged Sunday, and tomorrow morning we go back to the hospital. If she makes counts, we'll there for about three days. We tried to make the most of these days between (within the necessary constraints that prevent us from going anywhere or seeing anyone!). I think she had some fun...

Playing at her new water table in the backyard

Dancing!!!

Playing the "train game" (i.e., card sorting)

Jiggity jig

At 6 am...

Nurse (excitedly): "You are going home today!"

Me (groggily): "No, we're not."

Nurse (patiently): "Yes, you are. Her ANC is 240!"

Yippee!

We were home by 10:30 and washed off the hospital and napped in our own beds. 

We return Wednesday to start the next round, Interim Maintenance. It starts with a return to the OR for a lumbar puncture and then 3 days inpatient. 

We plan on enjoying our couple days of freedom!