Clinic Update

Mollie had her first OT clinic visit today- woo hoo!  She was quite nervous about the unfamiliar clinic, but it all went well.  Basically, she will be seen once a month for the next year for counts and a physical.  We are to watch for any signs of recurrence like bruising, palor, malaise, and swollen lymph nodes.  She can't have any immunizations for the first 6 months OT and no live attenuated vaccines (like MMR) for the first 12 months OT.  As long as she still has her port in, we need to call clinic for a fever (because she could have an infection of that central line and could become septic VERY quickly).  She will also stay on septra for about 6 months.

The whole appointment took an hour at most.  It was surreal to sit there and have a matter of fact conversation about Mollie being off treatment.  Dr. J was good about answering questions and told me that eventually Mollie will be seen in their long term follow-up clinic that deals with late effects (neuropsych and physical) of chemo.

Mollie's counts were good:
Hgb 12.4
Plt 465
WBC 2.6
ANC 856

The ANC is a bit low, probably due to the lingering effects of this virus.  So far all the tests they ran in the hospital have come back negative (so it was not an adenovirus or parvovirus and not likely to be fungal or bacterial); still waiting for the skin biopsy results.  We'll probably never know what caused it....


A Girl and Her Trophy

We didn't have the celebration we had planned for Mollie's last day of treatment, but the day was momentous and memorable none the less!  On Saturday morning, we presented Lucy and Mollie with trophies for being so courageous over the past 2 and a half years (810 days).  Mollie has been wanting a trophy for a while now and she couldn't believe she got a real trophy! 

I still don't know what my feelings are about Mollie going off treatment.  I know that I am scared of recurrence.  And side effects from the chemo, but mostly of recurrence.  I think about all the other families that have been on this journey.  For some, the treatment ended and they never looked back.  Other children have had countless health problems OT.  The most painful stories are of those children that relapsed and didn't make it. They died from this damn cancer after fighting it for 2+ years!  Scared is about all I can feel right now.

If you haven't been there, you just can't imagine what it feels like to sit waiting to find out if your child has relapsed.  Matt and I hardly talked to each other- I think we were each in our own little bubbles of worry, just trying to keep it together.  My mind was jumping from wondering how other parents felt when they were in our seats to 'how am I going to summon the strength to face this beast again, with a worse prognosis.' But... we got great news and I know how fortunate we are.  I am trying to focus on that.  I know Mollie feels some trepidation about going off treatment.  I don't think she fully realizes that the cancer can come back, but she just feels strange not taking medicine every night.  I can only hope that soon the nightly meds will be a fuzzy memory as we focus on living well, not worrying.

On that train of thought, we spent the rest of the weekend enjoying being out of the hospital.  My parents stayed until yesterday, so we did some shopping, walked around the UNCC botanical garden, dined at various local establishments, and took a little walk around uptown.  Today, we went letterboxing (if you don't know what that is, look it up and try it in your area).   We found a letterbox at a park that is just around the corner from our house.  Mollie and Lucy thought we were on a treasure hunt and had a grand time!  Liam got his second tooth so he was just enjoying the ride.  Mollie walked a lot and is feeling good!  Her gums are still a little swollen and the rash is just about faded away.  We will follow up with the oncs here on Thursday.