Wednesday, September 20, 2006

Changes

What a hell of a week.

Well, let me back up. Thomas is doing very well. He is finally able to take enough formula into his feeding tube that he should stop losing weight this week. Being full means he’s sleeping better, too. His eyelashes and eyebrows are almost completely grown in, and he’s got a nice red five o’clock shadow all over his head. And he’s handling the daily anesthesia for radiation very well.

Last week was our first week home in a month, and the first one home while Scott was teaching. It was rough. When we’re in the hospital, I do have to be by Thomas’s side all the time, but someone else is in charge of giving Thomas meds and changing his feeds and washing the sheets. At home, it’s all us. And, with Scott working twelve hour days, taking a break, and then grading for four hours, it was really all me.

It’s a lot. I could tell you about it, but it’s exhausting even to recall. Suffice to say, I can’t keep a round the clock schedule for much longer. And while Scott was really enjoying the time he spent in the classroom, he was falling further and further behind on grading and all the outside work good teachers have to do.

We thought we could pull this off – we thought that once chemo was over, Thomas’s care would get a lot easier. It’s getting easier, but very slowly. I think we’re seeing the truth that’s been creeping up on us all along, that there is no turning back, that there is life before and life after cancer, and they are as dissimilar as night and day.

We sat down and talked, and realized that no one was winning right now – not Scott’s students, and not our family. So with a lot of heartbreak on our part, Scott turned in his resignation this week. Tuesday was his last day of teaching.

I’ll talk more about finances later this week*, but basically Thomas’s medical bills will be covered by Medicaid and we’ll take a couple part-time jobs to cover the other bills until January. Because of your generous gifts, in particularly the mortgage payment provided by Hi-Line Supply, we will be able to stay in our house and get by for sure until then.

It sounds like bad news that Scott is quitting, and it is. But what can I say? It’s breathtaking the changes we’ve been through this year. But we keep finding a way through, us and the people who love us and support us.

It is night and day, but I think this is day.

Very early morning, pre-coffee, but day nonetheless.

*road construction has made internet connection spotty


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7 Comments:

At 11:34 AM, Anonymous Anonymous said...

I LOVE YOU all... SO MUCH!
*AUNT RHONDA*

 
At 1:39 PM, Anonymous Dee said...

Sarah--please keep close to us with regard to your needs. There are so many people reading this blog who have so much to give- money, materials-- anything that would make your lives a bit easier. You, Scott and especially Thomas are inspirations to us all! I hope you feel the warmth of prayer around your beautiful family. Rest assured prayers are being presented before the Lord and He has heard every one of them! There is much POWER in prayer!

 
At 7:28 PM, Anonymous Anonymous said...

We were so sorry to hear that Scott had resigned, but glad that Thomas continues to improve. Kirby will miss "Mr. Bickle" but we will keep you in our prayers and keep reading. Thomas has already touched so many lives, and you may never know the extent of your influence and inspiration. God bless you all. Pam Allen

 
At 8:13 PM, Anonymous Anonymous said...

Wow. I read this blog all the time and cannot believe all that you guys go through, and I thought I was exhausted taking care of a toddler. I admire you Sarah for all that you do for your son. You are all in my thoughts and prayers. Keep your chin up, and drink a lot of coffee too! :)

 
At 7:12 AM, Anonymous Lindsay said...

Scott, Sarah, and Thomas....if you need anything......from a package of diapers to a trip to the grocery store....anything....let me know.....I don't know if you still have my email or # but I will try and visit w/ Kait soon. I love you.....keep your head up...so many people love you and want to help.

 
At 11:17 AM, Anonymous Anonymous said...

Y'know ...I have read and re-read this entry several times and every time it makes me tear up. Thomas is such a happy baby - I Swear he doesn't realize the seriousness of his illness. Indeed! MOST of the time, he doesn't even look sick - so it's very easy to wonder why it is so hard. :( I was explaining to someone the other day what all Thomas is going thru with the new g-tube feeding vs the TPN tube feeding; how he is still connected to tubes the majority of the time and how hard that is now that he is so much more mobile. I told about how long it takes to load Thomas into the car every morning to go in for the radiation treatment and back again; about the tiny playpen area set up at home cuz of the length of the tube he's hooked up to. When I finished explaining, my friend said "so he has maybe three or four FEET of moving around lee-way?" to which I replied "yep. that's about right." Then she said "So, he can't really be left alone for more than a few seconds!??? HOW DOES SARAH GO TO THE BATHROOM!???" That's when it hits that it's a constant supervision thing.
I love you guys ... see ya soon.
Love, MOM/oma

 
At 2:21 PM, Blogger Thomas, as told to Sarah said...

Ha ha ha ...ok, seriously, if I write a book after this it will probably be called, "The Battle to Stay Regular For Parents of Tube Feeders, in the Hospital and at Home." Cancer parents would love me.

 

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