June 16, 2007

Glad to be home.

It is Saturday night and we are all home. Jack was released from the hospital today about noon thirty. We got back to Abilene late afternoon and went to pick up prescriptions and unload from the hospital. Rob and the boys went to see that new movie with the silver surfer, why can't I remember the name? Sophie and I went and saw Nancy Drew. She is much braver than I, let's just get that straight right now. I covered my eyes several times, closed my eyes even more than that just so I didn't look like a real scardy cat, and even the woman behind me yelped and jumped out of her seat, but not my Sophie. She loved every minute of it and wasn't scared even the smallest bit. All that said, that is why it has taken me so long to post after our arrival home.

I am worn out. Jack is worn out. I think our whole family is worn out.
I posted we went to the ER on Tuesday night, then Jack was ambulanced to Children's Hospital Wednesday at lunch time. Jack had a stomach virus Tuesday that apparently weakened his system enough that it gave into the swelling and pressure of the radiated tumor. 2 major issues came about because of that. 1. He has right side facial paralysis. Which means he looks like he had a stroke on the right side of his face. His resting face looks pretty normal, but when he talks or opens his mouth you can see only the left side works. 2. His right side vision is impaired. He can see straight ahead and to the left but not to the right at all. His eyes wont go past middle on the right side.

Will these problems heal? The answer is that the doctors don't know. It could take up to a year if they do. The facial paralysis has a better chance because the location inside his brain, it is not as close as the hub of what controls that right side vision, which was in the danger zone. These side effects of the radiation were known by us when we signed off on the gamma knife procedure. I think the doc said 1 out of every 10 kids would be affected by this type of facial paralysis temporary or long term.

We still feel like the radiation was Jack's only viable option, and truthfully, nothing else even comes close to the percentages of killing the tumor as the radiation. All that said, we are heartbroken. I guess I worry about Jack's self esteem and how he will be treated by his peers. I pray that he is strong within himself and doesn't get upset by people looking at him. When he had no hair from the chemo, he certainly noticed people staring, but for whatever reason because I knew it would grow back, or he could put a hat on his head I thought it would work itself out and it did. This I am praying will too. He has seemed depressed this week. He has just wanted to stay in his bed, I had to talk him into getting out of the room. He said to me today that he wished we could just have a day where he could stay in bed and not have to get dressed to go anywhere. That is not like Jack at all. He was looking forward to a birthday party that was earlier today, and that could have been why he was upset, because he knew he probably wouldn't make it. But it seemed to me as though his little spirit is broken. Please pray for him to find his smile, as crooked as though it might be.

He is back on different meds 4 times a day. Eye drops and cream to keep his eyes moist, the right eye wont completely close any more, and dexamethasone (sp?) a steroid to shrink the swelling in his brain and xantac to lesson the stomach upset from the steroid. The steroids are going to make him gain weight. He will be on all these meds indefinately.

O.k. enough tears.

The bright side is, he can still swallow. That was a concern and the fact that he has retained the ability to eat for himself and not in a tube is a huge deal. All those areas are right together. The radiologist said that if Jack has optimum nutrition that will facilitate the regeneration of the wiring in his brain and could make a huge difference in his recovery. So today I threw out every ounce of sugar and processed snacks in my house, bought a bread maker to make uber nutritional whole grain, nutrient enriched bread and a juicer. Optimum nutrition will be good for all of us. It is going to be a big adjustment, but sugar and refined foods have become enemy number one in our house. And then maybe the best news of all, as of the reading of the MRI 2 weeks ago, Jack's tumor has shrunk 1 millimeter since the gamma knife. Considering the aggressiveness of the tumor this is a big deal, and reason for encouragement and hope.

It has been a long week and I have been very strong for Jack. On the way home today tears silently flowed down the sides of my cheeks most of the way. It will take me a couple of days to work through the new transition and not be so emotional about it, but with God's help and your prayers I know that is more than possible. Please pray for Jack to heal, for our family to be strong, for his friends to be kind, and for God's glory to shine bright.

Yours most truly. Tammy.

12 comments:

shellie said...

It helps so much to hear your specific prayer requests. We will pray for Jack's healing, strength for your family and for Jack's friends to be kind and encouraging.

renovating this heart said...

Wow, a lot to face in such a sudden amount of time, for you as a mother and for him as a kid. I will definitely be praying. Especially for his little spirit, to remain strong and hopeful.

Anne Jones said...

Praying, praying...

Amy's Gang said...

Our little family will be praying for yours! His sweet spirit will be at the top of that list!

Anonymous said...

I am so glad you feel safe enough to be real about your ups and downs. We love you especially when you say "The Marcelains are having a bad day."
The prayers continue,
DeLynda

Angela in Abilene said...

We will be praying for Jack to make a full recovery. May God give you strength and many blessings along the way!

Karene said...

Remembering you all. Praying for all of your needs to be met.

Love you,

Scott F said...

Our hearts ache for Jack and for all of you. You don't cry alone and you don't pray alone. Many are joining you in this.

Anonymous said...

Your sweet spirit is such an inspiration. We are praying for you all. May God's peace surround your sweet family! Stephanie C.

Amber Joy said...

Your tears are contagious, friend. I haven't stopped thinking of you and Jack, Rob, Derek, and Sophie. I know it wasn't the weekned you had planned.
Still praying...

The Perkins said...

Tammy- We're in bed tonight reading your blog before we fall asleep. We are encouraged by your strength. Your's is a strength I don't know if I have. Please tell Jack many people he doesn't even know are praying for him. We ask God to deliver your requests in this post. We pray for strength for you, Rob and the kids. We pray for inner confidence in Jack and we pray that God's glory shine in your lives(it already is!!!). God be with you tonight in this mid-night hour. May his grace and strength surround you.

Mark and Kelly Perkins

The Perkins said...

Tammy- We're in bed tonight reading your blog before we fall asleep. We are encouraged by your strength. Your's is a strength I don't know if I have. Please tell Jack many people he doesn't even know are praying for him. We ask God to deliver your requests in this post. We pray for strength for you, Rob and the kids. We pray for inner confidence in Jack and we pray that God's glory shine in your lives(it already is!!!). God be with you tonight in this mid-night hour. May his grace and strength surround you.

Mark and Kelly Perkins