Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Wednesday, April 20, 2005



Wednesday, April 20, 2005 - a big day and the diagnosis.

I know this post is going to change multiple times as I try and re-write it to be more concise, but for now, here goes:

We were up at 2am this morning. Sarah woke Rebekah, or was it vice-versa? Either way neither of them let the other get back to sleep until 4:00 am when we had to get up to leave at 4:45am. At 5:15am we picked up a VERY good friend Pat Johnson (thanks Pat and Steve) who spent the whole day with us. At 6:00am we were at Providence Portland hospital for the PET scan.

The PET scan went very well, anesthesia, recovery and all, and we were packing up ready to leave there at about 11:00am. We were off to Emanuel Hospital to meet more doctors.

We first met the doctor who will be putting in the central line tomorrow, Thursday. We then had a quick lunch (Grandma Carolyn was able to join us!) and to meet with the oncology team as nearly all of the test results were back.

Let me first say that she has cancer, it has matastisized throughout the head and neck (though not to the rest of the body as was determined earlier) and surgery is not an option to remove it.

The diagnosis is officially Ewings Sarcoma - a bone cancer although we have learned that a bone cancer can also live (grow in?) soft tissue as well and this has. The planned course of treatment is extensive chemotherapy on a 3 week cycle (although we may enroll in a trial group that is investigating 2 week cycles) where chemo is administered every third week. When being administered she will be hospital bound for 3-5 days depending on which drugs are being given. Then we will be home for two weeks (1 week if we get in the trial) and back for more. Any complications, infections, sicknesses, etc. will find us in the hospital during the off week(s).

This will continue for 12 weeks and surgery will be scheduled. The HOPE AND PRAYER is that the tumor will then have shrunken enough to do surgery. This is not by any means guaranteed and using the word "likely" is probably too strong. WE NEED PRAYER FOR A MIRACLE HERE PLEASE.


I won't mislead you with figures and percentages as statistics don't mean anything when its your little girl - she is the only one that matters and not the other 99/100 people.

This type of cancer is rare in small children. The very active oncology group that we are in saw one case "similar" a "few years ago". They are part of a larger consortium but it is still very rare. They are, however, very familiar with this type of cancer which is supposed to behave quite similar across the board without regard to location or age of patient.

At this point we are scheduled to be admitted to the hospital tomorrow and have surgery again to put in the central line and harvest bone marrow. They will then keep her for 24 hours to establish base line (pre-chemo) levels for heart, kidney and other organ functions. We should be able to go home over the weekend and will have to return again on Monday for chemo to start. Then we will be on the cycle I talked about above.

The final thing we had to do today was talk about money with the social worker. Wow. We are privately paying for insurance right now and that plus the deductibles and copays are going to be horrendous. Frances is not able to work hardly at all. Please pray that God provides a way for me to be with Rebekah and and the same time for my practice to pick up in a way I can handle it in order to support this.

Again, I am sorry this is rambling and I will make some changes later, but for right now this is what we know and my brain is not working totally straight.

Go home, hug your own kids a little extra longer, and be thankful for a beautiful day. And please, keep praying...

7 Shared:

At Wednesday, April 20, 2005 9:28:00 PM, Anonymous Anonymous Left a thought...

Dear friends and family,
This is Rebekah's Aunt Tiffany. I am so touched by all of your support. When something like this happens to a child, we often question God and or draw near to Him for strength. We think, "Why her?" We may never know the answer, but we do know that Rebekah has already touched so many people's lives in ways that we will never know. We may not know what to do or say...

"In the same way (as hope sustains the believer in suffering, so the Holy Spirit helps him in prayer), the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:26-28

Grasp on to God; Draw strength from Him; Draw near to Him for comfort.

In love,
Tiffany

 
At Wednesday, April 20, 2005 9:30:00 PM, Anonymous Anonymous Left a thought...

Scott, Francis, Rebekah, and Sara:
We are praying for you daily, and in our thoughts constantly. The kids are praying for Rebekah's head to be healed (Josh's words exactly.) We are here for you to talk with and to listen to if and when you need us. Rebekah, we are so proud of you, you keep fighting and how brave you are!

In God's name,

Love,
Russ, Tracey, Zakk and Josh
ps. You are being prayed for in Idaho, Utah, and New Hampshire!

 
At Wednesday, April 20, 2005 10:03:00 PM, Anonymous Anonymous Left a thought...

Dear Rebekah,
At only 3 years old you are so special and touching so many lives. Many children and adults admire your stength and courage( hang in there precious one) we are praying for you! We love you and your family so very much.

God bless you and yours

Your Friends: Ja(JaLisa), Mindy, Bub and Ricky

 
At Thursday, April 21, 2005 12:52:00 PM, Blogger JodiTucker Left a thought...

Dear all OR family,

I think and pray for that miracle so often throughout the day.....Whether it's crying, and then crying out to God at this computer after school or driving in the car or at home or wherever, He hears us.....Just echoing every word that Aunt Tiffany had to say!!....You are loved and prayed for from sea to shining sea

Because He first loved us,
Jodi

 
At Thursday, April 21, 2005 1:58:00 PM, Anonymous Anonymous Left a thought...

Praying wisdom, peace and healing upon your family.

Praying in Vermont

 
At Sunday, April 24, 2005 6:43:00 PM, Anonymous Anonymous Left a thought...

Mom, Gay, had the kemo every 2 weeks for her cancer.

 
At Saturday, April 30, 2005 7:32:00 PM, Anonymous Anonymous Left a thought...

Dear Rebekah and her loving family,

You are in my prayers. I have a twelve-year-old son and five-year-old daughter and I can not image what you must be going through.

I wish you strength during this challenging time and I pray that yours will be a story of triumph.

We shall follow your journey with hope and prayers,

Lindsay
New Westminster
British Columbia
Canada

 

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