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.

Thursday, May 28, 2009

No Evidence of Disease

No Evidence of Disease. Those are always wonderful words to hear. And this week was no exception to that. It is always good to hear that there are no signs of cancer. We continue to run the risk of Rebekah's cancer returning, but for now it has not and for that we are thankful.

We continue to work with Oncology, Pediatrician, Endocrinology with Rebekah's Hormone issues (specifically thyroid and growth hormones), ENT (Ear Nose & Throat), Eye Doctor, Developmental Pediatrician, and Psychologist (Behavior Therapy) not to mention the therapies Rebekah receives at school. It keeps us busy.

We were able to start Growth Hormone Shots last Thursday. Although we don't use the word shot or poke around her. We call it her Grow Tall Medicine. And she calls it her Grow Tall BooBoo Medicine. With her device (called Easypod), she does not see the needle. She has been a trooper through all of it. She has taken ownership of it and gets the medicine out of the refrigerator, picks where the medicine will go (it can go anywhere there is some fat - just like insulin - arms, legs, belly, etc...), cleans the area with an alcohol wipe and helps push the button to "get" the medicine. She says "owe" and flinches, but doesn't cry and doesn't avoid it. We are very proud of her! After giving her the first dose (which we do at bedtime), she woke up in the morning asking if she was taller. She says she wants to grow as tall as Mommy. She is proud of herself for growing taller. She says "my taller now" as she stretches herself out. We need to get a growth chart, so we can track it and she can see it.

We are still working on the details of paying for the growth hormone shots. It has been a busy couple of weeks for us, so we haven't made much progress. One step at a time...

I've posted twice tonight, so be sure to check out the previous post, too! It will make you think.


Sibling Empathy

I have mentioned before that I am on a list for people affected by Ewing's Sarcoma. This week, I received the messsage below from one of the other moms on the list. With her permission, I am posting it here. I hope that it will get you thinking.

Her daughter Delaney's tumor was located in similar areas to Rebekah's and her treatment was also similar to Rebekah's. As I read the post, it brought tears to my eyes. I can see Sarah being much like Joshua as she grows older. It breaks my heart that Delaney and Joshua have to go through situations like this, especially knowing that my children may have similar situations in their future. It also reminds me how much siblings of cancer kiddos and special needs kiddos are affected by the cancer and/or special needs.

My eleven year old son, Joshua – has empathy beyond his years.

He has become the “older” brother to 13yo Delaney and worries about the fact she does not have friends her age. That being coupled with the fact she prefers to spend time with the elementary school kids – who don’t tease her – had him quite upset the other day. So upset, in fact, that the boy who does everything possible to get out of homework – especially writing assignments – crafted a letter that was later returned to me with an apology by two of the fathers up the street. Apparently, when Laney became upset because of a perceived unfairness in the game that was being played, one of the wives/moms said to her in front of Joshua: “Delaney, you need to go home. You can’t come down here all old and bald and cry. It’s weird.”

“My sister Delaney was diagnosed with cancer in June 2002. That was the darkest time for my family. So dark that my dad left my family. The reason that I’m telling you this is because I’m not trying to be mean but I think something is wrong. On Thursday, she came home crying because Maddi said she wasn’t allowed to play with Delaney. I’m just saying that is messed up. On Friday, she RAN home crying and Delaney NEVER runs.

Both of those days I was weak and couldn’t do what I was thinking – cry and say “Stop it!” But instead, I just stud [sic] there. On Thursday night I cried for about five minutes saying “Why didn’t I stick up for her?” Again, I think something is going on. Delaney is really nice but she has brain damage to her frontal lobe. That makes her emotional but super smart. She just doesn’t have any friends besides the girls down their [sic]. I thought a nurse like Monica would understand.

Respectfully, your neighbor,

Josh P. Diggs

PS I think Delaney won’t be coming down anymore.”

That one, brought me to tears. His insight and empathy were more than I could bear.

But the letter? I’ll keep it until the day I die. The most worrisome thing about Delaney’s illness and late effects is wondering how she will be cared for when I’m no longer here. I don’t think I need to worry, do you?




Monday, May 18, 2009

Off to the Hospital Tuesday Morning...

It is scan time again, and Rebekah has her MRI scheduled for tomorrow (Tuesday) morning. So we will be up early and out to the hospital on a "skip breakfast" day. We'll all skip with her. We were hoping to get the Panorex and Chest XRay done beforehand, but it doesn't look like we'll have time. We'll have to find another time to make that happen.

We will meet with the doctor next Tuesday for results. Meanwhile, I'll try to get some preliminary results the end of the week.

Last month, we did some testing to see whether Rebekah's body is able to create growth hormone. It is not. So she will need to have growth hormone shots. We've been working with the endocrinology office and a "bridge" company that works with the manufacturer of the growth hormone shots to get insurance to cover them or to get assistance from the manufacturer to help pay the bill. The shots cost $2800 per month. Ouch! Our insurance specifically excludes growth hormone shots. The "bridge" company doesn't pursue insurance if there is a specific exclusion. We'll have to see what we can do personally, if anything, to get insurance to pay for it. Meanwhile they are sending an application for "patient assistance" to help cover or completely cover the cost. One step at a time...

Meanwhile, they sent a month's supply and the "device" at no charge, so that we can get started on it. It arrived late last week. Now we need to get some training on it, so that we can start them. The nurse is scheduled to come out Thursday afternoon to train us on it. We need to make sure that there is no evidence of active cancer before we proceed with the shots. Therefore, I want to get preliminary results on the scans, so that we know whether we should be starting the growth hormone shots or not.

Rebekah has been taking a synthetic thyroid medication for two months now because her thyroid isn't functioning properly. The cancer treatment hasn't definitely taken a toll on her. These (growth hormone and thyroid) are just two more ways that we need to deal with.

Sorry it has been so long since we posted. Life has been pretty hectic. I'll try to fill you in a little on what has been going on in our lives...

We took a little extra time off at Spring Break and enjoyed some time in Sunriver thanks to Mommy Debbie and her family. We invited some friends along and we all enjoyed the time.

Then during spring break and the week after, we all got sick. It made for a very long time away from school for the girls.

We've been working with a Behavior Therapist and have been making some progress. We have started a reward chart for "good behavior" with some grab bag prizes. Both girls have a chart. They can each get a stamp or sticker on their chart for having a good meal time (finishing what is on their plate within 30 minutes without fussing) and getting ready and going to bed well (helping mom or dad brush/floss teeth, get jammies on and get medicines and then go to bed nicely without fusses or getting out of bed unneccessarily). Rebekah can get a stamp/sticker for doing her eye patch for 2 hours without complaining or trying to take it off. Sarah can get a stamp/sticker for letting mommy change her earrings without complaining (she still doesn't like me to even touch her earrings).

Rebekah is doing really well with her pierced ears. We are changing them regularly now and she likes to put different ones in. It isn't always easy, but she doesn't fuss much about it and gets excited about the possibility of a change.

Sarah, on the other hand, does not want her ears touched. It is almost impossible to clean them, much less take them out and replace them. She pushes my hands away if I get anywhere near her ears, bends her ears down to her shoulder and shrugs her shoulders up toward the ears - all making it difficult to even get to her ears.

Because Sarah's birthday is the middle of September, she just misses the September 1 date for Kindergarten. We spent a lot of time looking at what it would take to get her into Kindergarten this year (before she is due). Academically, she is ready and we could see that. The other piece to readiness is social and emotional. We thought she was ready, but her preschool teacher did some testing and found that she wasn't quite ready when it came to the social and emotional side. So we've decided to keep her in preschool one more year and let her be one of the oldest in her class.

She really enjoys preschool and she will have the same teacher next year, so I know that will be great for her.

Rebekah has some nights where she wakes up dry. We are praising her big time for those days. Her teachers will give her high fives too. Waiting for the day when we can be done with pullups for good. It is in sight, just not here yet.

Please pray for Gage and his family. They are trying to treat another recurrance and things are not looking too good. His family could really use a lot of prayer right now. They are getting second and third opinions, but not holding out much hope for a cure. My heart breaks for them.