February 28, 2011

Update on Carl - keep praying!

Here is an update on Carl and his family that I recently asked you to pray for.  This is written by Emily, his wife.  Please keep praying for this sweet family!  - Jamie


WOW, what a day (8hrs @ the hospital)!? So sorry it has taken THIS long to update!? We got back to the hotel about an hour ago & Carl was trying to get our Skype account up & running to see our kids. Just as we got it going, the tornado sirens went off & the family headed to the basement!? SO...here we are after getting the "all clear" from the "potato" (as Reagan calls a tornado) then chatting with the kiddos & my parents.

Let me 1st say that I thought southerners had the monopoly on hospitality & easterners were a bit brash & rough around the edges!? Well, apparently the employees/providers at The Dana Farber Institute went to charm school!!! WOW, were we absolutely blown away at the kindness, care, compassion & efficiency at which they handled our care & Carl's treatment!!!

Here's the “short” version (remember, we were there for EIGHT hours) --he needs to begin chemo IMMEDIATELY. Doctor confirmed it is a Ewing’s sarcoma. With the MAX dose of chemo, it is 72% curable (it’s very sensitive to chemo—good thing). However, there’s a 30% chance it could come back or he could develop leukemia from the chemo…WOW, A LOT to process.

So we're starting tomorrow @12:30p!!! It'll be a 6 month, intense regimen of 2days (4hrs each) of 2 chemo drugs/IV hydration, wait 12 days, then 5days (8hrs each) of 3 chemo drugs/IV hydration, wait 9 days, then the 2day regimen again, etc. In between each round, he’ll have to have Neupogen shots everyday (to help keep up his white blood cells from bottoming out), get lab work, watch for fever/infection, deal with nausea (strong anti-emetics) & INTENSE fatigue!!! Also, Carl will be joining the elite “Mr. Clean haircut club” after 3-4wks ☺ So the social worker suggested making his hair loss fun for the kids (so it’s not so scary) & shave it 1st then go for ice cream or something!

After 8-12wks of the (2day, rest, 5day, rest routine), he'll be reassessed for radiation AND continue the 5day regimen EVERY week for 6wks (with radiation). We have an appointment with the radiation oncologist on Friday to determine if (more like probably) he'll have to come back to Boston for the radiation. Dr Morgan (medical oncologist) said that his tumor is in a tricky location & could be further complicated by the rods & screws in his back!? (we'll let you know what he says).

He also had an echocardiogram, prelim blood work, & met with the social worker. She gave us some great resources re flying him back for radiation, on-campus housing, books to help the kids understand, support groups for couples, & financial support.

PHEW, I’m tried just thinking about it ☺ Anyway…it was reassuring to hear her say that this ordeal is actually MORE stressful for the caregiver than the patient. WHY? Because the focus is usually on the patient, he/she gets all the good drugs, the caregiver is often forgotten & “expected” just to be there for the patient. I was relieved to hear they take that into consideration & give me/us/our family ways to “readjust to normal.” I have been dealing with this heavy guilt & stress about how can I be superwoman??? Meaning, how can I manage work, kids, house, bills, AND be there to support & see Carl through this. Her response…YOU can’t but OTHERS can. So as much as I have hesitated to ask for help, I guess y’all are about to have to step up!? See, I told you to be careful what you volunteer for because I might just take you up on it!? HaHa!

Anyway…a lot of emotions, questions, uncertainty & some fear today. However, God is SOOOOO merciful & faithful. On what was a very cold, blustery, sleeting day outside, He put SOOOOO much warmth, concern, compassion on the inside of the hospital in the form of some amazing individuals. And we couldn’t help but sing His praises & let those we met know that we serve a mighty God & The ultimate physician!

We’ll update tomorrow after chemo. We truly love & miss each of you! Have a great night & “there’s no place like home!!!”

2 comments:

  1. Prayers to Carl and his family. The odds are in his favor and GOD is in his corner! And I KNOW you will step up :)

    Lifting them in prayer and sending you loads of hugs. Rub the little boo boo for me.

    xxx

    ReplyDelete
  2. I have been keeping this family in my daily prayers and will continue to. God will see them through this. :)

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