The days of heavy chemo are behind us and we are looking forward to returning to a more "normal" life. "Normal", of course, has a new meaning.
Maintenance - Easy in some ways, not in others:
Maintenance started with a spinal tap and chemo flush. If you are scratching your head thinking, "I thought he said the days of chemo were behinds us." The days of HEAVY chemo are behind us. Small doses, however, are here to stay.
Maintenance will be easier on Carson physically...not necessarily easier on Jennifer and I. Here's what the 85-day cycle will look like:
Methotrexate (spinal flush) - Start of every 85 day cycle
Vincristine (IV chemo) - Days 1, 29, and 57
Prednisone (steroid) - Days 1 - 5, 29 - 33, and 57 - 61; 2x a day
Mercaptopurine (oral chemo) - Daily, no eating before/after
Methotrexate (oral chemo) - Weekly
Bactrum (oral antibiotic) - 3 days a week; 2x a day
(I think I'm going to have to lay this all out on a Gantt chart.)
The good news is Carson's hair is already starting to grow back out.
A Little Celebration:
Last week we took Francesca and a friend to the Ringling Bros Circus. Carson had low counts and couldn't attend. Due to a technical difficulty, however, the second half of the show was cut short and we were provided tickets to a follow on show. Fast forward a week. Carson's counts are up, and he gets to go to the circus!
Carson LOVED the show. The elephants, zebras, tigers...and the world biggest collection of little people who flip/twirl/fly through the air. (Where do they get all those performers??) It was an amazing show. Oh yeah, the salty pretzels were a hit, too.
After two hours of sensory overload at the circus, Carson finally runs out of gas and crashes in the car.Many thanks to Growing Hope for providing the tickets to the circus. Although it didn't look like Carson was going to be able to go, in the end everything worked out and he did.
Big miracles and small, we like them all.
Paul.
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hello paul and jennifer we are gary and federica from cristinas home town in italy - we met you in rome - we too are praying for carson and we admire you very much for your strength and courage alex is typing what we
ReplyDeletesay - our english is so so --- we do understand it better that we write or speak it -- our regards to you all --- pietro is the same age as francesca and emily and we also have emma (10) and amelia that is the same age as carson and gianpaolo --- again, our prayers are with you and your family
This has been an amazing year for you, and while you have been coping with all of it, you've taught the rest of us about faith, trust, and strength! We rejoice with you concerning Carson's reaching the maintenance stage and celebrate with you about Francesca's amazing accomplishments in swimming competitions! May the next 265 days be gloriously happy and healthy days! Blessings! Barbara K.
ReplyDeleteMany blessings come from maintenance therapy - but like you mention you need a spreadsheet to manage the meds. I HAD one for a bit with our son Mason - A.L.L. dx May 2005, relapsed Jan 2008, finished March 2010.
ReplyDeleteI will keep you in my prayers and am glad to have connected with Jennifer via the Mom Sense Magazine~