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....
Dear Matt, Sarah, MOLLIE, Lucy & Liam,
ReplyDeleteWow!!! We understand your celebration and your worry. Treatment has been a big part of all of your lives for a long time, now you have to wing it.... We are sure Mollie will fly.
Love and Hugs to all,
Phil & Holly
We found the coming-off-of-therapy transition pretty stressful and anxiety-ridden. This is so very normal. Over time we each found ourselves ever so slowly letting down and relaxing into yet another "new normal". Be patient with yourself. It IS hard to let go of that chemo; it has been a security blanket for over 2 years!! Now your primary job is to BREATHE and allow yourself to relax into TRUST that all will be well. It takes time but I promise it does become easier...
ReplyDeleteThank you for posting on Roro's site. What a sh*tty two days. Just want to get through the next week... I love hearing from you.
Hang in there hon. Every day is a success, a day closer to that magic 5 year mark. THAT is what firmly sits on your family's horizon.
Big hugs and loads of support,
Michele, Rowan's mommy, www.caringbridge.org/visit/rowangrace
momtororo@gmail.com
Love ya Mollie. Live life a day at a time but don't forget to plan for the future. The whole King family is a bunch of sweethearts. That may not seem appropriate for Matt but it is still true.
ReplyDeleteI love you all!
Wow. I would understand if there were a whole plethora of emotions landing on the word let-down. Not in a negative, but you all have been so go go go fight fight fight, your entire world revolving around the big C and all the tiny details involved in Mollie fighting it. You all (sometimes you and Matt, sometimes Mollie) have taught me an incredible amount. Mollie is an amazing fighter and you two are some of the strongest, most impressive parents I have the honor to know.
ReplyDeleteNicola