Hospital Visit 1 of 6 — Done!

29 Aug

Lenox Slays the Leukemiasaurus: So Lenox was quite a trooper through this 1st hospital visit of Consolidation. After the morning spinal procedure, etc. they did a 24 hour drip of a strong chemo drug called methotrexate. That ended around 8 pm on Wednesday and then they do what is called a “leukovorin rescue” which helps her body rebound to some degree.  The docs have to see that pretty much all of the methotrexate is out of her body and the leukovorin helps expel it. Tuesday and Wednesday night were tiring, but pretty smooth. The whole visit Lenox was obstinantly stubborn about taking her medicine. On Wednesday, I think Liz and I (and occasionally the nurses) spent about 8 hours trying to get her to take the equivalent of 3 Tablespoons of meds. The hard part is that because Lenox had learned how to be a very good spitter (she is quite proud of this!) she spits out the medicine. So essentially we have to get her to agree to take it and can’t force it down her throat. (Believe we have all tried to no avail to do the forcible route).

We likely would have been able to go home Thursday except we were really having problems with Lenox’s port and couldn’t get blood level confirmation that she had cleared most of the chemo. The port  was working pretty erratically so sometimes her blood draws came out just  fine, but at other times they couldn’t get even a drop. Tuesday and Wednesday nights were ok, but on Thursday when getting the draw to see if her toxicity was reducing accordingly was so critical, we just couldn’t get any blood. It was a grueling night – I think about as hard as those first few nights of our Induction hospital visit – because they had to try to manipulate her port a bit to see if they could get blood out of it, which upset Lenox majorly, and then even worse they had to replace the port access. This entailed taking out the needle access  to her port, and reinstalling one. When in the office, we do numbing cream about an hour ahead of time but there was no time to wait so they did the “reaccessing” of the port with no numbing cream. Lenox was so upset and in pain – it was horrible to watch. Even after that the port was not working! Ugh! They had put a drug in her line to see if it could help “unclog” it so to speak and the premise of that drug is that it must be pulled back out from the line, not pushed through. So they couldn’t draw blood and they couldn’t try to flush the line. So – horrible of horrible – they said there were going to have to do a separate IV in her arm. As you may recall from prior postings, the IV in the arm was a grueling horrific process for her – scary and painful because her veins tend to roll so even the best “sticks” among the hospital staff were not able to do it in the past. Her only truly horrid memory of that first hospitalization was the treatment room where they did the IV line. I was so upset Thursday night thinking we would have to do it again because I knew this would be really tough for her. By this time, 3 am, even the charge nurse felt there weren’t options left. But – aha! – thanks be to Jen the Charge Nurse Wonder – she thought to call the pharmacy and ask what the risks were if we did just flush the line and that medicine went into her system instead of pushed
out. The time frame for the drugs negative effects if pushed into system were already past, so as a last resort she asked if we wanted to try flushing it through and see if it worked one last time. We said yes and thankfully IT worked! Got the blood they needed and were able to hook her back up to fluids. The tension and anxiety of that evening was so tough on all of us, but whew, it’s behind us now!

Her toxicity got down to the minimal level they needed to see and we came home Friday afternoon. We were all exhausted and went to bed. Before we fell asleep Lenox said she wanted to ride her bike to her  friends house the next morning which sounded great til she threw up first thing upon rising. Now we have her on preventative Zofran (anti-nausea) and are hopefully staying ahead of it. Looks like the residual side effects of that big dosage of chemo will manifest over the next several weeks and then as we undergo the ensuing visits, they will have a cumulative effect on her.

Some good tidbits from the hospital: I got to chat in more depth with someone from the financial office and they helped me understand some daunting billing questions I had; we had a social worker and child life specialist come talk to us about our medicine administration challenges and give some suggestions; and she had her first PT session. Looks like this will be the first of many – they are recommending she have PT twice a week to work on the neuropathy and strength. Lenox also put on many shows for us in the hospital amphitheater and was quite the diva ham! Loved it!

Now at home, her spirits are high and today she did a ballet show for us. She is taking her meds like a champ (mostly) and had a friend over today for a visit.

What’s Next: Today is Day 13 of 133 so we are 10% of the way done already! Pretty good! We go on Tuesday for her next outpatient chemo push and it is of the drug Vincristine, the one that is tough on her and has the neuropathy   side effect, among others. Next hospital visit is in 2 + weeks or so.

The Moms in the Margins: We are hanging in there – whole family on the Slaying initiative above so moms have no independent thought or activity :).

Gratitudes and Shout-Outs:

  • Thanks to the Mitchells for the totally perfectly timed package – came the day before we went to the hospital! She loved it and keeps looking at the picture you sent!
  • Major thanks to Paul and Ro, Marva, Nidia, Lois and Jen S (LBB) for great meals and gifts – very sustaining. Ro, we love the “butt fork”. !
  • Props to Jody, the possibly most omniscient person, who seems to show up with the right things at the right time unasked!  The dino pillow and blanket was so awesome! As were the meals and other treats and toys.
  • To St. G’s and Ms. Cindy and Ms. Ashley, thank you so much for the wonderful class project – Lenox has used the sheet fairly consistently to hide under while taking her medicine. She really loves it!
  • And thanks so much to Kristie and Diane and family for watching Jonah for us!

 

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