We received so many wonderful emails and voicemails from all over the country with well-wishes and prayers - all were filled with hope. Your words have filled us with strength and most important hope. Hope that we have the support of so many, and hope that Alex will pull through this with the strength and determination that we all have come to love about this amazing boy!
We met with Alex's Oncology team yesterday evening, and got our "road map" to recovery. There was so much information - I'll try to summarize the best I can:
According to Dr. Stork - this is an extremely fast cancer - she says that if Alex had been in a car accident even last month, and received a chest x-ray at that time, this tumor would not have been visible. It doubles every 24-48 hours. So we caught it as soon as we could have.
Today is day 1 of treatment. Alex is receiving strong doses of steroids - this will melt away the mass and his kidneys will be put to the test, as the dead cancer cells "explode", and his body eliminates the waste. He is on another medicine that binds with the ureic acid in the cancer cell waste, and helps it pass through the kidneys. They are drawing blood through his IV every few hours to watch his kidney function - so far, so good. In a few minutes, Alex will be prepped for a procedure to put a "PICC" line (a semi-permanent IV line) to replace the IV he has now - the nurse just came in, and every time he sees one, he says "no pokes?" - needles are definitely scary for him. This procedure will also inject some chemo medicine directly into his spinal fluid. Even though there are no detectible cancer cells in the spinal fluid, it is standard procedure to use Chemo in the spinal fluid as a precaution - since most cancer of this type - if it was to return, would return there.
Alex is on the floor with Eric rolling his cars under the bed from one side to the other side - the IV line is hanging to his side - I am again just struck by how strong and amazing this little boy is...
Alright - we just got back from leaving Alex in the procedure room - when they gave him the sedative, his eyes got a far-away look - it's hard to leave him and watch the door close in our face as we take one last look before our boy is in the hands of his doctors.
During the next 29 days, his "road map" lists his medications - for those who like to research:
Day 1 - 29: Prednisone each day (oral)
Day 1 Cytarabine (in the spinal fluid)
Day 1 Vincristine (through IV)
Day 1 Daunorubicin (through IV)
Day 5 PEG Asparaginase (shot -ugh)
Day 8 Vincristine (through IV)
Day 8 Daunorubicin (through IV)
Day 8 Methotrexate (in the spinal fluid)
Day 15 Vincristine (through IV)
Day 15 Daunorubicin (through IV)
Day 22 Vincristine (through IV)
Day 22 Daunorubicin (through IV)
Day 29 Methotrexate (in the spinal fluid)
We expect that by mid-next week, we will get to go home - Alex keeps telling me "Mommy, I feel better - I want to go home" - breaks my heart...
Eric found some great articles on this type of cancer. The first one is in plain English:
http://www.childrenshospital.org/az/Site1258/mainpageS1258P0.html
This next one is for our scientific friends, who want all the technical details :-)
http://www.emedicine.com/med/TOPIC1364.HTM
We received a book from the nurses up here - it is really well written, and has more information on this family of cancers called: Non-Hodgkin's Lymphomas: Making Sense of Diagnosis, Treatment & Options by Lorraine Johnston.
Another update in a few hours...
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Lots of prayers coming your way. We'd love to come visit, but don't want to impose. Chandler has been worried as have I.
ReplyDeleteMelissa
Sara and Eric: My heart goes out to you during this difficult time.
ReplyDeleteI know how stressful it is for a parent to see their child ill. I also know there have beeen great strides in the treatment of all types of cancer. Children are much more resilient than we sometimes realize. You are very well informed and appear to be in very good medical hands. I know you are given lots of information, and I hope this is helpful to you in understanding, but the steriods may alter your sons personality somewhat, which will require even more patience from you.
You are also blessed to have such a strong network of family and friends to help.
Best wishes, Ann Adair, Martinez, Ca.
We will check back frequently to read about little Alex - such a trooper! You and Eric are wonderful parents. Hug hugs for you, Cousin. Love, Mel
ReplyDeleteEric & Sara - Thank you for doing this blog so we can keep up with Alex's progress. I can only imagine what you are going through. I mentioned to Grammie Gale that I might be coming over to the Portland area next Sat the 22nd, so if it turns out that I will be, I'll get in touch. I would dearly love to meet Sara and the kids, and see Eric again, since I haven't since you were a kid! All of my friends and family are sending good thoughts for Alex. Love, Joni - Astoria, OR
ReplyDeleteOur thoughts are with the family!
ReplyDeleteI keep seeing in my mind T & K playing with Alex and the wonderful smiles and energy. He greeted us at the door with excitement because he had some serious playing to do and his playmates had finally arrived. I am pretty sure T & K took naps after that visit. 8o)
We were pretty dang impressed when he showed us how he could park his jeep. Nobody could have been a greater helper with the lawn crew. Most of all, we loved the masterpiece paint job of the shed, hahaha.
We are looking forward to many more of those memories!
With love and prayers
Haughts
WE are only 10 minutes away if you need anything - Do not hesitate to call...If you need another dose of Connor also just let me know:)
ReplyDeleteJoelle and family
Hey Sara and Eric,
ReplyDeleteI heard about Alex the other day, and I was totally shocked. You're in my prayers, cousins! Hope everyone else up there is doing well.
Much Love,
Cousin Annie