Updates (Nov 27-Dec 3)
Sunday (11/27) – Ian’s neuropathy pain is still constant. The pain in his feet has spread further up each foot, and he always rates it at an 8 (on a scale of 1 to 10). They have increased his gabapentin (Neurotin) to 3x the initial dose, and he still has yet to feel any relief, and this is while taking tramadol at the same time. No relief. Zip. Zilch. Zero. Nada. Nothing. His headache pain at least ebbs and flows, between a 3 and a 6 or 7, but it hasn’t been below a 3 in over a week now…
The gabapentin has completely zapped him from the little bit of energy he’s had lately (in addition to NOT helping any with his pain). He hasn’t had the strength to be working on his PT exercises at all the past several days, which is such a bummer as he does not want to lose any forward momentum, but with his pain level so high, ugh, I feel so bad for him.
I’m planning on calling the oncology clinic first thing in the morning. Dr. S said something about bringing in “the pain team”, if things didn’t ease up for him. Things haven’t eased up, in fact, they’ve continued to worsen, so it’s time to bring in the pain team!
Monday (11/28) - The pain is unrelenting. He’s been unable to sleep. Waiting for a call back from the clinic about meeting with the pain team. It’s been 4 hrs since I called…
Tuesday (11/29) -We spent way more of our day down at Children’s than we had anticipated, not arriving home until just after 5pm from a 10:30am appointment…
Ian had some more tests done, and met with a doc from the pain team. We discussed some med changes and trying some Lidoderm patches, which weren’t in the bag when I picked up the prescriptions, because they aren’t covered by insurance. So, I asked how much they cost, thinking I’d just pay for them like we’ve had to do with a couple things that haven’t been covered. And then I was told that they were something like $256, and, well, yeah… We’re waiting for the back-and-forth between the docs and the insurance company to see if they’ll end up covering those.
The physical therapist at Children’s brought in a TENS Unit to try on Ian’s feet, and after trying a few different settings found one that felt like it was doing something. After a while, she asked him what level his pain was at, and he had this bewildered look on his face, as if to say “What pain?!” and he slowly answered, “There’s no pain… it went away…” His feet didn’t hurt for a little over an hour, which was the longest break from the pain he has had since it began.
Wednesday (11/30) – Today’s physical therapy appointment was with his new therapist at the Sister Kinney Rehabilitation Institute up closer to where we live. She tried several different settings and was only able to bring slight relief for a few moments to Ian’s feet. We spent the entire session playing with the TENS Unit and being shown how to use it to keep trying one at home, which we did, for most of that evening, never achieving the kind of success he first had.
It only ever worked for him that one time… Ugh, I can hardly describe how disappointing that was, and is… His pain is so unrelenting.
Thursday (12/1) – This morning Ian told me his pain was worse. I asked him to clarify, as it had been an 8 or 9 the day before. “Does this mean a 10? Like ‘I can’t stand this, I think I’m going to explode, get me to an ER’?” His response- “What I thought was an 8 or a 9 was really only a 5.”
He didn’t know pain could get this bad- he had to recalibrate the pain scale.
I called the clinic, the nurse talked to the doc who called a neurologist who worked him in on short notice that afternoon.
He did an EMG and confirmed that Ian had definite nerve damage, that it is the axon and not the myelin that is damaged, and that it IS consistent with the damage which can be caused by the Vincristine (chemotherapy drug) that we was given during his Proton Therapy (radiation). The course that it has taken, including the delayed onset, is not typical by any means, but it can and (obviously) does happen.
Nerve pain is really, really, really, hard to control.
We once again spent the majority of our day down in Minneapolis…
We had planned on admitting Ian to the hospital on Friday morning, to begin his maintenance chemo. At this point, no one wants to throw anything new into the mix until after we can get this peripheral neuropathy pain under control. We especially don’t want to give him something that could potentially cause more nerve damage. We changed the plan. We decided to admit Ian in the morning, but not for chemo. He needed to be admitted for pain control.
Friday (12/2) – Ian was admitted to the hospital to try to have his increasing neuropathic pain managed.
Each day is worse than the day before…
They tried tylenol (really?!) and tramadol (we had given up on that one at home as Ian didn’t notice any effect on the pain) round the clock at the same time as the increased his neurontin. He also tried Lidoderm patches on the tops and bottoms of his hands and his feet. All to no real avail. He said that they maybe brought the pain down from a 9 to an 8, for a short while.
Saturday (12/3) – His pain was not decreasing, if anything it was increasing.
There was talk of moving him to the PICU, to try some narcotic pain-killers, starting with very small doses (especially considering his sensitivity to meds and his respiratory arrest after surgery with the small dose of morphine) and titrating up while closely monitored.
I told him before I left that he needed to speak up and let the nurses and doctors know when he reaches his breaking point, when he felt like he couldn’t take it any longer. Ian is such an easy going good natured doesn’t want anybody to go to any extra trouble type of kid that he hadn’t said much to them up to that point.
“How are you doing?” about the same…
And then he’d turn and tell us that it was getting worse.
I want to thank everyone again for your thoughts & prayers!
This very hard, very long journey has NOT been a lonely one. Your thoughtful comments, e-mails, cards, and letters have meant so much! This world, that can seem so big and cold at times, has become so small, cozy, warm, and friendly for us, and we’re so grateful.
Thanking Him, for all of you!
I’ll keep adding to this post throughout the week, check back for the latest update…