1.) Rion's platelets are still down slightly, actually they are down more than they were before. They are at 70 now and 2 weeks ago were 80. However, this is nothing to be concerned about for 2 reasons- they aren't all that low (below 10 is considered too low even though anything under 100 is undesirable) and it normally takes about 2 weeks after stopping chemo/lowering dosage to see an improvement. He should be back up to snuff by the time we begin the next round of chemo. Which brings me to part 2...
2.) His tentative date to start the next round of chemo is May 1st. We're assuming that we'll continue on with the plan that was laid out by Duke back in February which calls for 12 cycles of chemo that will be taken for 5 consecutive days and then stopped for 25. Our prayer is that Rion is able to continue on with the same dosage that he just took for 42 days since we know he can tolerate it (and also because we are concerned with what a higher dosage might due to his blood counts since the lower one did have a negative effect on his platelets.)
3.) We are going to be scheduling an appointment with an optometrist to get Rion's eyes examined, specifically his peripheral vision. Rion has been running into things lately, mainly door jambs as he tries to pass through a door way. As humorous as it sounds, the doctor immediately perked up when we mentioned it and performed a sort of rough test to see if he could detect anything abnormal about his vision; it does seem that he has less peripheral vision is his left side than his right...the side where all the radiation was concentrated which makes sense. One of the scariest side effects of radiation was damage (permanent & temporary) to the optic nerve. While Rion's tumor wasn't located close enough to the optic nerve to cause damage, it appears that the radiation beams might have hit it just right to cause him some trouble. Prayer #2 is that this is only temporary and doesn't get any worse. I am concerned that it might affect his ability to drive if it doesn't rectify itself by the end of next month when he can legally drive again.
Wow, it seemed like so much more when we were in the appointment for 30 minutes...maybe it was the 50 minutes we had to wait once we got there this morning. Hmmmm.... but regardless of the wait, I would recommend this group of doctors hands down to anyone going through chemo and/or radiation. They are always running behind because they take the time to really listen and answer all of your millions of questions, even those that seem insignificant. If we had felt rushed for time this morning I doubt we would have mentioned the running into things which turned out to be kinda a big deal.
Regarding the local doctors, I am also super impressed with how concerned they are about Rion's comfort level- he sneezed this morning and the doctor actually asked if he had allergies that were bothering him and then proceeded to discuss the different allergy medication that was safe for him to take. Wow! All just because he happened to sneeze when the Dr was in the room. He could have just said 'bless you' and let it go but he took the few extra minutes to answer a question that we hadn't even thought to ask. We also mentioned that the pain medication he has been on since surgery and still needs occasionally doesn't seem to be agreeing with him any longer (an aside, he had actually stopped taking it all together a week or so ago because it made him feel so lethargic and icky when it wore off but the plain Tylenol just wasn't cutting it either so he has been in more pain than normal lately.) Without even batting an eye or giving us a shady look he asked if Rion has taken anything before for pain that worked and then prescribed him enough of the new (narcotic) medication to get us through the next month.
I guess I still have a hard time seeing myself and Rion as adults and actually being taken seriously by all of the doctors and nurses; it's a combination of age/lack of experience dealing with a major medical issue and just plain lack of education that leaves me amazed that these doctors are so concerned about our well being and comfort. It's easy to forget how serious our situation is when we're at home but then in the office when we have MDs bending over backwards to help us it reminds me that this isn't just a routine headache we're treating. It really does ease some stress to know that we can bring up anything we are concerned about, no matter how minor it may seem, and it will be addressed immediately and without criticism.
Ok, that's all from our appointment today. Rion is doing really, really well all things considered. He still has to nap some days, especially if he was really busy the day/night before. He has also found that he gets dehydrated super easily and has to drink a ton of water to keep from feeling poorly. His weight is still doing well, down just a little bit from where it was at the end of treatment but then again he had gained 5 pounds over those 6 weeks so still remaining constant. His appetite is good and we're still focusing on eating "real" foods 90% of the time and avoiding processed, refined, franken-foods.
I am not sure if I'll post again before next Tuesday when we head up to Duke but please, please, please pray for us. The MRI the evening of the 17th looms on the calendar and I can't help but feel a sense of impending doom which is probably just my nerves getting the best of me. As much as I complain about feeling overwhelmed, I am super glad to be as busy as I am so that I don't worry about next weeks appointments any more than I already do. As always Rion is super positive and optimistic and some days I feel like I am the patient and he is the caregiver.
One last note, some people have asked about the t-shirts & bracelets and I should have them any day now! They were supposed to be done last Friday but I'm sure it's just a matter of time before I get the call that they are ready for pick up and we'll finally be able to start selling them. Thanks for all of your patients and understanding- there is just 1 of me and I have about a gazillion balls in the air right now.
Here's my favorite cancer patient showing off what he calls his "good side..." I just can't express how beautiful his head looks to be bald- I just love to rub it & kiss it!!
Love and Blessings,
Emily
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