Last Tuesday night Ian’s port site looked and felt a little odd. About 1 inch above the port is the insertion scar and it was quite red and felt kind of bumpy underneath. So we watched it that night and the redness slowly dissipated, but we called clinic on Wednesday anyway and they wanted to see him Thursday. Thankfully Miss Kelly was able to access and draw blood and flush the port without any problems, so it worked just fine. She and Mary think that it’s probably just a matter of the catheter part of the port being positioned a bit differently or being more apparent now that he’s growing more. So we just need to watch it and hopefully everything will remain fine.
The great news was that he grew another ½ inch this month!!! Amazing how much his body likes being chemo and prednisone free. Also all of his blood work was blissfully, beautifully NORMAL!!! So that was great news too. Since we had to go in last week we don’t have to go in on the 2nd, but have made plans for his next x-ray series to be on the 9th or 10th of December and then we’ll go in on the 15th to discuss the results and get his port flushed again. Hopefully these scans will be totally normal too and we’ll be able to move to the 3 month scanning schedule at that point. His lymph nodes are still swollen, but seem to wax and wane a little bit in size. He does still have the face rash though, so we are still hopeful that is the reason for the swelling.
After dropping him off at school after his appointment I raced to the airport to head to KC for the weekend for my Mom’s 60th birthday party. I had a great time catching up with family and Mom and Dad’s friends. Everyone was disappointed that Ian and Ryan couldn’t make it back, but with cold and flu season in full effect and his immune system still recovering we didn’t think we should put him on a plane just yet. With the help of family I put together a video slideshow of Mom’s 60 years and we played it as a surprise at the party and it was a great hit…especially all those lovely hairstyles and clothing from the 70s! In lieu of gifts Mom asked if folks would donate to the Histiocytosis Association and/or the Diamond Blackfan Anemia Foundation on behalf of Ian and Amelia. Not surprisingly Mom’s good karma that she’s put out over her lifetime continues to come back, as there were over $2600 in checks to the HAA and $2800 to the DBAF. Thank you so much everyone for your generosity…it’s remarkable and so appreciated.
I got home on Sunday to find that Ian had just a bit too much fun with his cousins and while Daddy, Unc E, and Aunt RoRo thought the boys were playing trains upstairs, those Brown Boys were in fact jumping from Matt’s bed onto an air mattress on the floor. Apparently Ian jumped a bit too soon after Matt and got a nice shiner under his eye. He’s fine, just looks like he was in a prize fight!
We’re looking forward to the Thanksgiving, the best holiday of the year! Time to take stock of the things I’m thankful for this year:
• Ian being LCH free.
• My remarkable husband and best friend.
• Ian’s resiliency.
• Our family and friends for all their love, support, and fundraising generosity.
• A sense of humor and finding laughter in the little things.
• Ian’s outrageous 3 ½ year old stories and songs (did you know we recently had a monkey singing Holly Jolly Christmas in one of the trees in our backyard?).
• Good jobs with VERY understanding bosses and coworkers.
• The fantastic health insurance we have.
• Our new President!
I hope each and every one of you take a few minutes on Thursday to really examine what you are thankful for. The most precious gift we have in life is time, use it wisely!
Thanks for checking in on Ian and Happy Thanksgiving!
Tracy
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