Here Daniel is resting while the chemo goes through his IV. He's sporting his new sleep headphones -- they're built into a fleece head band and don't hurt his ears while he sleeps. They also make a great eye mask. He found them on Amazon so I ordered them. (Thank you to those of you who have given us wonderful gifts to pay for such helpful extras like these!).
Back on Friday we had our check-up with Dr. Uhlman. We told her that we haven't been seeing any improvement from the Cisplatin, and that, if anything, Daniel's throat/chin area is more swollen. She did an exam and doesn't know if it's the lymph nodes or the main tumour that is swelling. She also remarked that every time she looks at Daniel's tongue it looks different.
We asked what the plan is and if it's changing like she said it might a few weeks ago. She said she wants to keep going with the Cisplatin and give it more time to work. It can have a cumulative effect. She doesn't want to give up on it too soon. She said she feels strongly about this.
Plus, there is a clinical trial that will likely be happening at the end of the summer that she wants to see if Daniel can get in. You can only have had Cisplatin to qualify. But even then, participants only have a one in three chance of getting the trial drug. The control group gets regular chemo. And also studies have shown that this trial drug is only working in 20% of cases, but it is far more selective and thus has far fewer side effects than regular chemo drugs. Apparently, it is a powerful immune system booster.
So, Dr. Uhlman wants to see if she can keep Daniel "limping along" until then, but of course if things get worse she will definitely reevaluate. So, we'll see. Our hope is not in clinical trials or regular chemo drugs. Our hope remains where it needs to be -- in God.
Last Thursday we had a Skype appointment with Dr. Zubek (amazing technology!). We brought up the Magic Mouthwash again and how the one he's on still isn't as good as the one he had in the ward. It doesn't soothe his tongue as much.
If you'll remember, his tongue feels like it has jalapeño acid on it all the time; that is somewhat helped by one of his pain meds, but the mouthwash brought him even more relief.
Dr. Zubek asked us to go up to the ward and get their specific recipe, and then she would send it to her pharmacist who will make it exactly to order. So, after our check-up on Friday, we headed up there. It had been a while since Daniel was discharged! And we were both glad he's been at home all this time since.
We right away saw the head nurse who had been so helpful before and we made our inquiry. She and the other nurses started looking into it. Then Dr. Uhlman walked up and asked, "Hey, what are you guys doing up here?" They all conferred a bit and then the head nurse said that we'd need to get the recipe from Dr. Mitchinson, the pain and symptom specialist who had prescribed it. Who should walk in at that very moment? Yes, Dr. M.! He pulled out his binder and handed them the recipe so they could photocopy it. Another nurse then talked with the cancer pharmacy to make sure that that was the same one as before (as maybe something could have been added to it) and they confirmed it. The head pharmacist also came in and the head nurse conferred with him a little too. Plus, our favourite nurse then came in and we were able to visit a little.
Just a series of coincidences? We know better.
As this whole dialogue was happening over the course of about twenty minutes, Daniel and I remarked to each other how we were seeing God work before our very eyes. I could never have accomplished that with just a phone call to the ward, and tracking down all the necessary people to find all the info that took just a few minutes would have taken several days.
So, now that it's Monday, we dropped off the recipe at Dr. Zubek's and are waiting to hear back. Please pray that this will help Daniel give him the relief that he needs. Otherwise, his pain is being managed pretty well, and we're so thankful.
Today is Josiah's fourth birthday! But since we're at the hospital most of the day, we celebrated his birthday yesterday evening with some extended family. It was low key but very nice.
We continue to pray for complete healing for Daniel in whatever way would bring the most glory to God. The days are very hard, and the nights are even harder for Daniel, but we continue to rely upon God for strength. Thank you for continuing to remember us in prayer. We need it.
Have you tried aloe gel, straight from the plant and onto the tongue?
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