Archive for February, 2012

Sweet Baby Boy Update & Happy St. Valentine’s Day

Well, we are now a couple of weeks into this new treatment and everything has changed – again.

In the first week, my sweet love has gained over 6 lbs. Yes… I am shocked as well. Eating, eating, eating. We have been to Outback almost everyday because he eats without us!!!! Praise God!!! For the first time in over a year and a half, we haven’t had to feed him or say “Take another bite Noah… take another bite”… and every meal takes 2 hours and we still throw it away. His spirits were up and things were going well. Dennis and I had very high hopes of both children going to school this entire week. Then Monday came and Noah woke up and couldn’t see. He has extreme double vision that is up and down.

Of course, we run to the hospital. They do a bunch of tests and conclude that it is swelling in his brain from the chemo and it’s … normal…a side effect. We are going on day 3. He is dizzy and wobbly. Noah has my scarf wrapped around his head over one eye. We sleep in my bed snuggled together so I can watch and hold him all night.

So… Happy Valentine’s Day!

Not being able to go to school and celebrate Valentine’s Day with friends, we did at home. The kids got crafts and books that they wanted and played bingo! We also made a video! What’s crazy is I am now sure that my children are from a different era!!! Look how well they fit it!!!

Thank you Heavenly Father for our blessings. We are blessed!

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MRI…I’m still processing

I’m still processing, but here it goes…

My Angels bad cells are growing and spreading throughout his brain – spread a lot since December. My heart and soul are breaking, but our Heavenly Father is keeping me strong. This has been a very hard month, because this is the first time that Noah has taken me aside and said “Mom, I think this tumor is back.”  He looked so scared. For the first time. Numerous times. Took my breath away… but I held him and said “No…It’s not, but we are still fighting the bad cells and they are bad, but you are a Jedi.” He also talks about Heaven almost every night. “Mom, what direction is Heaven?” (Thank goodness he still ends with “Are you going to miss me when you are in Heaven?” Praise the Lord!

We are now going to start a new reginment study from Europe that uses 5 drugs. One of them is thalidomide!!! Yes, I wrote thalidomide!!!!  Like I said…I’m still processing.

“Amber…do you know what thalidomide is?” Yes. Unfortunately I do…(as I pray.) We have to call the drug manufacturer (Dennis started today) every month to answer questions to a survey to make sure that “he is not sexually active” and if he is, that we swear and make that we make sure that “he is using two types of birth control” to get the prescription. We have to sign an affidavit. Unbelievable. A birth certificate does not suffice. A Baptism and Confirmation don’t either. Another of the drugs is a cholesterol drug… and on and on… Some are once a week, most are everyday…pill or straight into his brain…laying down for hours again. We are trying to buy time for Houston.

The LORD is my shepherd,
I shall not want.

He makes me lie down in green pastures;
He leads me beside quiet waters.He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the LORD forever.
Noah says every night “I love that we are going to be together FOREVER. And you know Mom, hell seems like a really ugly place.” I believe it is baby. God Bless You Noah.
Thank you for your love and prayers. We need them more than ever. Thank you God for holding us up. (Even if I want to fall.) There are no guarantees in life that we will not have pain, but we do have the unconditional guarantee of love, strength, guidance, and more strength. Thank You Lord. My baby.

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