So I' ve been a bad blogger....Its been a couple weeks since my last post, and that one wasn't very informative. Lindsey and I have had a lot going on these last few weeks and I was waiting until we had some answers before I shared. But now I do, so here I go....
Lets start with Linds. As some of you know, she's had another nasty flare up of her Colitis. We went back to her Dr and he did another colonoscopy to reconfirm the Colitis diagnosis and see if there had been any improvement since her October procedure. So for those keeping track thats an 8 year old having 2 colonoscopies in 6 months...poor thing! Anyway, he did state their was SOME improvement, but not enough and she was showing signs of being steriod dependent. His recommendation was to try a new course of treatment which was an IV infusion of a drug called Remicade which she would need every 8 weeks. It was a really tough decision because this drug comes with some very nasty potential side effects, but the alternative is her having to have her colon removed. We met with both her Dr and got a second opinion and they both confirmed the Remicade is the best course of treatment for her and while the possible side effects are scary, they are very rare (4 in 10,000 users) and effect mostly young or adolscent male users after 2+ years on the drug. While I'm still losing sleep worrying about it, she did have her first infusion last week and we're already seeing an improvement with things so I'm hoping we made the right decision!
We had to go up to Dartmouth Hitchcock in Lebanon for the first treatment in case she had any reactions to the drug and they sent us to the children's oncology floor for her infusion. That was both extremly hard seeing the little kids fighting such an awful disease and also a good reminder of how much worse things could be. I can't imagine what all those parents must go through and am thankful we're not in that situation. Of course, when we walked in they took a look at me in my scarf and proceeded to try and send me to the adult infusion center. It took them a few minutes to understand we were there for Lindsey! The infusion went well though, after a little bit of fighting when the IV went in, we settled down for 4 hours and watched movies and had popcorn. It was a long day, but overall an okay experience. We have to go back in 2 weeks, then 4, and then every 8 weeks after that. Hopefully just for a year and then we can wean her off the Remicade. Lindsey's been a total trooper through it all and as usual, I'm extremely proud of her!
Now as for me, I saw my Bone Marrow Transplant Oncologist in April and he said I was doing great, some of my levels were still on the low side, but nothing too out of whack so he relesed me from his care and back to my regular oncologist. I have to admit I was very sad to be leaving his care, he was an amazing doctor and I loved him from the first visit to my last. Of course I hope never to need his services again, but I'm going to miss him. Its funny how close I feel to some of my doctors but they have made a terrible situation so much more bearable with their humor, kindness, empathy and care.
The one thing that did show up in my bloodwork was I seem to have a liver infection that isn't improving as quickly as they would like. I am on medication for it and hopefully it will clear up soon, but due to that, and my still low white blood cell levels, my Oncologist recommended I stay out of work a few more months so I can rest as much as possible and hopefully recover more quickly. I'm not arguing with that, the summer off sounds great, but I am looking forward to getting back to work and hope things continue to improve so I can go back in Sept. My immune system is still "new" and I won't get my immunizations and be off anti-viral and anti-bacterial medications for six months to a year! I didn't realize what a process this is!
As far as to where I stand Cancer-Wise....I have a Pet Scan (to rule out any new cancerous lessions or tumors), a Bone Marrow Biopsy, and a ton of bloodwork all coming up in early June so I expect I'll have better answers in a few more weeks. I feel really good except for the fatigue that never seems to go away, and some new aches and pains that while annoying don't seem too worrisome to my Drs.so hopefully they are nothing! But both of my Oncologists believe we've killed most if not all of the bad cells and I should be done all the major treatment for hopefully a very, very LONG time!
I promise to keep you all updated as I get more info, but just wanted to fill you all in on whats been going on the last couple months! On the home front, things are crazy as always! Baseball is in full swing and Ty made all star team again and we had that game on Saturday. It was a great game, they tied, and Ty did great! Lindsey is gearing up for her dance recital in June and her costumes are adorable! She also started cheer tumbling for Cheerleading and we have that every Friday night now. Hopefully she'll be a better tumbler than her Mommy who never even learned how to do a cartwheel!! And my baby Drew is all signed up for pre-school next year (sniff, sniff!) We visited the classroom and he's so excited to go. Mommy not so much. What will I do without my little guy with me in the mornings? And finally, we're opening up camp this weekend! Yippee! Can't wait for the first campfire of the season!
We hope you're all doing well and hope you're all enjoying the sun....FINALLY!
xoxo,
Tara =0)
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