Today was Rion's first trip to the medical oncologists office all by himself!! I felt like a mother letting her son go off to school for the 1st time- I was afraid he would forget to ask the doctor something, or they'd have trouble drawing blood and I wouldn't be there to hold his hand, basically I was afraid I would be needed but I wouldn't be there. But of course everything went fine & Rion probably enjoyed NOT having me there to butt in all the time & ask a million questions : )
He got the all-clear this morning from the medical oncologist to start his next round of Temodar tomorrow. There was a small concern that his white blood cells might not be high enough because they were slightly low last week but they have rebounded nicely and are perfect now. We were also concerned because Rion still has frequent bruising on his legs of unknown origin which before indicated that his platelets were low; this time the doctor says it's due to spatial awareness, more specifically his lack there of. Even though his vision is spot on, Rion still runs into things frequently because he isn't as acutely aware of his body positioning at all times like most people are. But this, like everything else so far, is just a minor inconvenience and isn't really a hindrance on every day life.
We feel much, much more prepared as far as what to expect from the Temodar & how to be pro-active instead of re-active. We are going to keep Rion on round-the-clock anti-nausea medication even if he is feeling good since last time he suffered from vomiting with no nausea (which the doctor says can be controlled with anti-nausea meds.) We are planning a very low key week next week and next weekend. I'm going to have healthy, mild dinners for us each night so if he does feel up to eating it should be easy on his stomach. Additionally he is going to make a conscious effort to snack frequently and eat small meals so there is always food in his stomach- another way to combat the vomiting (and I bet it will help with fatigue too.) And no alcohol for the 5 days he is on chemo...I know that drinking at all on anti-seizure medication is controversial but both sets of oncologists agree that one drink a day is fine. It may seem silly but with everything Rion has had to give us, letting him have a beer every now & then is really important to maintain a sense of normalcy. However it didn't seem to go over so well last time he was actively taking the chemo so we're cutting it out this time.
I'm not going to lie, the first round of chemo sucked. We were constantly faced with new (and worsening) side effects and it felt like each time we found something that helped alleviate the problem then something new would come up. Now we have an arsenal of tools to use instead of scrambling around using trial & error to figure out what works. Irregardless, we are both apprehensive about this up coming week.
One last tid bit, the doctor indicated this morning that they will more than likely increase his dosage of Temodar after this month if everything goes ok and his levels remain up or don't dip too much. Hopefully that won't cause the side effects to be unbearable and Rion will be able to manage it for the 10 months that he will have on that dosage. It's hard not to feel like we are "losing" a year to the chemo (a year and a half if you go back to when this all started last November) but I keep telling myself it will all be worth it if he continues to have consistent MRI's (I'm not saying clear in light of the information that we received last week that there is in fact still iffy spots on the MRI.) I'm already ready to have this all behind us and have Rion back to his old self. But maybe I'm holding on to an unrealistic expectation and should just be grateful for every day we have together, I am definitly grateful that God has given us more time together!
I hope everyone has a great weekend!
Emily
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