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!!!”

doctor's visit update

Today, I finally saw my doctor!

No, that doesn't mean that for 17 weeks of this pregnancy I haven't been going to the doctor - as those that regularly follow this blog know - but what it does mean is this is the first time doc and I have chatted since the start of this pregnancy.

And she's totally worth the wait!  She puts you at ease.  She takes the time to talk with you, even when you know she's overly busy today because her ultrasound tech called in sick.  She's great!

In fact, she's so great that when I voiced a concern over not having much sick time to take for doctors appointments let alone upcoming maternity leave, she suggested she see me on some Saturdays.  Yes, Saturdays!  She is on-call one weekend a month at the hospital, and she said she at times sees patients on a Saturday when needed.  So, we moved my next ultrasound from March 16th to March 19th.  This way, I won't have to take time off from work, neither will Michael, and also Beth can come see if she's going to have a baby brother or sister. 

I'm looking forward to March 19th!  It's made me excited about this pregnancy.  You know, to have the whole family there to see who is in my tummy and who will complete our family.  It'll be a great day!!! 

The doctor did remark that I looked very tired.  She gave me another prescription for Zophran - a good friend during these still VERY nauseous times.  Thankfully the vomiting has subsided, but the nausea - as I told her - is still very strong, making me very tired, and at times feeling down or emotional.

This pregnancy, she admitted, has been very different for me as she compared this one to Beth's stats in her file.  One of the biggest differences is my weight gain.  At this point in my pregnancy with Beth, I was 13 pounds heavier than I am now.  Proof the nausea has curbed my appetite.  However, there's nothing unusual about the way I've been feeling.  I'm pregnant! I'll just have to wait it out.  COME ON JULY!!!

On a nice note, I got to hear the heartbeat again.  All is well with our bean.  I can't help thinking it's a boy... we've even got a boy name we're almost set on - Micah.  Although, we're still thinking about it...

Prayers for Carl

We have a friend in our sunday school class named Carl - a husband and father of 3 beautiful children ranging from 9 to 4.  Months ago, he started experiencing back pain.  The doctors couldn't really find anything wrong with him.  They gave him some drugs, suggested some exercises...  Still the pain persisted.

Finally, a scan of his back was done.  It revealed a mass on his upper spine.  Surgery was scheduled to get the mass out, as it was determined that this must be the cause of his pain.  This updated was then posted on his wife's facebook...

Surgery went quicker than expected (3 hrs vs anticipated 5hrs); Dr didn't have to use a "patch" so there was no invasion of the spinal cord; he's cleared to have 2nd surgery (as long as healing is progressing) in 3 wks; the tumor was NOT a what the Dr originally thought, therefore, he seemed a bit concerned (re pathology); frozen biopsy came back inconclusive; add'l specimen sent for further analysis & the results can take 4 days -3wks (ARG!)

2 weeks later, it was revealed why pathology came back inconclusive on the tumor.  His wife Emily wrote on facebook...

Honestly, I am trying to type thru the tears, headache & the spinning in my head. We do know that Carl's tumor is malignant (a Ewing sarcoma). The "usual" treatment for this cancer is immediate oral chemo drugs x9wks, then radiation, possible surgery to remove the remainder of the tumor, then up to NINE months of chemo. WOW, we may have a VERY LONG journey ahead... Anyway, he goes tomorrow for a CT scan & a consult with the thoracic surgeon. However at this point, we've been HIGHLY urged (from a pediatric oncology nurse & her oncologist she worked for) NOT to proceed with 2nd surgery. While this is preliminary, she feels Carl needs an extensive metastatic work up (ie-bloodwork, bone biopsies, CT scans, etc) to determine the extent of the cancer. So we are waiting on her to relay his report to her oncologist & then recommend which facility/doctor within the US would be best to handle it. This cancer is VERY rare (only 250/yr in the US) & virtually ALL of them in children & adolescents. So...we'll let you know as we know something. Honestly, I don't know what to even ask you prayer warriors what to exactly pray for... Oh, my heart is SOOOOO heavy!? AND, our kids don't know this yet! THanks for keeping this between the adults! Love you all more than words can EVEN begin to say...

Right now, they are awaiting suggestions from two top oncologists in the nation who have dealt with this cancer in adults.  Really, in adults over 30, only one or two are found in a year to have this type of cancer.  Also, Carl goes in today for another scan to see if the cancer has spread.

So I ask those of you who are born again believers in our God the Lord Jesus Christ, pray for Carl, his wife Emily, and their three precious children (Tyler, Madison, Regan).   Pray also that they will get a clear direction from the doctors as to what to do next.  Give Carl wisdom to know what path he should travel concerning his treatment.  Also, please pray that the scan today reveals that his cancer has NOT spread. 

Carl is a testimony!  Yesterday in sunday school, he stood up before us all and said, "I thank God for this cancer! I had prayed that He would use me one day to reach thousands, and I wasn't sure how He would do it but felt like He would one day.  I really believe that this is how He's going to do it.  I can't stop thanking my savior for this opportunity, and I can't stop taking every moment I can to let everyone know there is a God... He died for us... He loves us... wants a relationship with us...  Just ask Him!"

I couldn't help but tear up when I heard him say this!  To thank God for a cancer that will - odds are without a miracle - kill you?! 

So today, offer up prayers for Carl to our Jesus, fully God and fully man.  To He who was and is to come.  Join me in this.  And then I plan on praying for myself, that I would be less self-centered and more giving.  That I would gripe less and love more.  Wow, he's a testimony!

I needed that

I get really tired some days/nights.  Like today, after sitting through speeches in every single class I teach - biography speeches in American lit and special occasion speeches in public speaking - and then I go to a literary team meeting after school, get my Beth, go to Chick-fil-a for dinner, run to church, help out in children's choir, and then help out in Awanas... Well, I'm tired...

And when I get really tired, I get really depressed lately.  Like I just want to cry myself to sleep and not wake up the next morning!

But as I was reading through some blogs, I came across Kristie's blog Samantha's Song.   I love Kristie.  She always seems to have the right words when I need them!  God is really using your life girlfriend to minister to us in the BLM community!!

Well, she had made this video with the Mark Shultz song, "Time That Is Left."  I'll put a youtube link to the song at the end of this post because I can't seem to link to hers, but if you want to see her video with the song, visit her page that I linked above.  Anyway, the song is what I needed to hear to tonight.

It asks some questions I really needed to ask myself...

What will you do with the time that's left?
Will you live it all with no regrets?
Will they say that you loved to your final breath?

What will you do with the time that's left, Jamie?!  Sit and throw those pity parties?!!?  NO!  Despite how tired I am, how we may struggle with money, or how overwhelmed I feel at times, we've got it pretty good compared to many out there!  So, NO!  No pity parties!  At least not tonight ;-)

I try to live with no regrets.  I put it all out there!  I give my 100%  I try to love always.

What will you do with the time that's past?  Can you give it to Jesus and not look back?

Yes, I can.  I must.  I will.  That doesn't mean I won't remember our Angel, but I do need to start dwelling more on God's will that's kicking around in my belly.  I need to give it all to Jesus.

What will they say when your time has come?  Will He say well done...?

I hope so! That's what I want!  I want that higher way; I want to meet my savior with plenty of crowns to lay at His feet.  He's given me so much; He'll give me so much when I enter His kingdom.

Oh, how this weary soul yearns for that day...  Till then, I'll be about my Father's business.  Doing what I can, when I can. No more, No less.  No more because I don't want to burn out.  Even Jesus needed to walk away for some quiet time.  But - No less because He doesn't deserve less.

What will you do with the time that's left?
 

compelled to write

I feel compelled to write something today...

No, I didn't drop off the face of the earth ;-)  I've just been busy and tired.   Busy with work and slowly trying to clean up things around the house, and so this makes me pretty tired.

Nope, the nausea hasn't left me, but I'm not vomiting as much anymore.  I've just resigned myself to the fact that this pregnancy is going to be much more difficult than being pregnant with Beth was.  I'm going to be more sick, but - on the bright side - I'm not gaining as much weight as I did with her either! 

I'm trying to lower my expectations for myself.  I'm just not going to be able to keep my house as clean or get as much done around work as I have previously been able to - even when I was pregnant with Beth.  Taking things slowly and one day at a time.

I have a doctor's appointment Wednesday - 16 week check up, this time with the doctor for sure! LOL  Then on March 16th is when we find out if we have a boy or girl in my tummy. 

Gotta run now - it's nap time!  for me AND Beth ;-)

Good News

We're going to be able to keep Beth at her current daycare for their pre-k program come August! 

I had told the daycare/preschool that we just couldn't afford non-Georgia funded pre-k.  In Georgia, pre-k is free because it's lottery funded.  However, where Beth is now is a private Christian daycare/preschool. It's not a Georgia pre-k.  Anyway, it was just going to be too expensive when we'd also have to pay daycare for an infant come October (when I'd have to come back to work).

However, they said they wanted to give us a discount.  Oh me of little faith never imagined they'd discount to the point where we could actually afford the daycare/preschool for BOTH kidos - an infant and pre-k!?  But God never ceases to amaze me!  They've given us a HUGE discount, and now the daycare/preschool I was so heartbroken that we couldn't afford for Beth and our rainbow is within the range of our budget!!!  What an answer to prayer!  I should have had faith.  God says in His word if we are faithful with our money to Him, He would provide for our every need - AND HE CERTAINLY HAS!

Just wanted to share how amazing our God is.  Makes me feel good :-)