This past month has literally been a blur to me...we are all pretty emotionally and physically exhausted from all the Atlanta trips and overall chaos from juggling schedules, kids, and household responsibilities. Not to mention Sam trying to function for work and coming home everyday to Connor just a wreck from his meds and the chemo. Ryan and Stacy are managing well, I will say that the bus has been a blessing this year as far as getting them to and from school. I know they need a break too, makes me look forward to Thanksgiving! A few days break will make a huge difference for us all.
My foot is a little better (I sprained it really bad two weeks ago) it is TRUE what they say about sprains hurting more than breaks! Horrible pain and even now it is still bruised and swollen and cannot bend to the right at all. I never went for the bone scan since we are too busy, but I'm wondering if there might be a small break in there somewhere after all...might have to look into the physical therapy the doctor recommended but I hope to avoid it and just keep exercising it myself.
Connor has been back to school two times now. I hope he can resume a more normal scheule next week (praying) he misses his teachers and especially his friend Donte. The break has not been good for him socially, he is not wanting to go to school now at all but once he gets there he is fine. I guess a little clinginess is normal after all he's been through. The class has been sweet to remember him and they all signed a card for him and sent home a fire mans hat the day he missed seeing the firetruck.
Looks like we are in a holding pattern for now with his meds-letting him get through the after effects from today's dose of Rituxan and then watching and waiting before we go to the next step if his OMS symptoms get really bad. We are going to use a medicine called 6-MP instead of the steroids if at all possible, but the worry is it takes time for the new med to start working-so more steroids might be needed regardless. It is an oral chemotherapy that he will have to take everyday but seems to be the lesser of two evils compared to the steroid induced psychosis and pain he endures with the Decadron.
I am very sad to say that it seems like Connor still has not bounced back to his usual self after the horror of the Decadron two weeks ago. It might just be due to the chemotherapy but it is scary nonetheless to see him so changed. Very irritable and grumpy-probably from just not feeling good in general.
Speech Therapy is now cancelled for the next two weeks :-( after our dramatic exit from their last week. Connor was in severe pain and saying his tummy hurt...they have a VERY strict cancellation policy due to so many parents being no-shows, etc. That I was afraid to call and cancel and risk losing his spot. (I am not happy with how this makes it so hard on Connor when he has legitimate reasons to not be there sometimes) so he is screaming through most of the session and I am ready to fall apart from seeing him suffering, yet still struggling to do his speech work....as we are leaving he vomits continuously all over the waiting room. I just had enough- I asked his therapist to please just take him off the schedule for the next two weeks until he is over most of the side effects from the chemo.
The numbers came out today at our clinic (Aflac Cancer Center@CHOA) and 361 new cancer cases were diagnosed this year alone at just this clinic! So sad how busy the clinic stays...but I am soo grateful this is where Connor gets taken care of-wonderful doesn't even begin to describe the care he receives here.
Thanks for checking on my little guy <3
Before OMS Onset....
Connor was SO happy and interactive-then OMS struck at 15 months old and he changed overnight...