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, April 08, 2010

Things are getting difficult

Over the last few weeks, things have gotten much more difficult for Mommy. Mommy has for a long time said that she had a bad leg and a good leg. Now, it is more like a bad leg and a better leg. She is having more and more difficulty with the right leg (the better leg). The disease is definitely progressing. In addition, her arms are being affected - especially the left arm. It is difficult to raise her left arm over her head and not particularly easy for her to raise the right arm. Tasks like dressing are getting more and more difficult. Kitchen tasks are difficult. It is hard to get items off the top shelves of the refrigerator or dishes or other items out of the upper cabinets. Daddy is having to help her a lot. Even with a grab bar and raised toilet seat, Daddy often has to help Mommy to get up. We have a shower bench, but Mommy can't get up from that without help either. Mommy has noticed changes in her breathing and in her swallowing. While only occasional at this point in time, they are indications of problems which can become very serious.

We need to remodel the bathroom so Mommy can have an easier time using it. The plans are in place to do that the middle of this month. But, it will mean being without a bathroom that Mommy can use without help for several days. While there are two other bathrooms in the house, Mommy will need help.

The girls saw the dentist last week. Rebekah has 3 cavities in her permanent molars. The 4th one of the molars isn't in all the way. The dentist believes that the cavities are the result of the enamel not being very strong because of the radiation Rebekah received during her cancer treatment. They are working with insurance to try to get it covered under medical insurance as we do not have dental insurance. Meanwhile, the dental office has found an organization that helps pay for dental work for children with cerebral palsy. They may pick up whatever portion of the bill that insurance doesn't cover. Please pray that medical insurance will approve it and that this organization will help pick up the remainder. As you can imagine, funds are tight. Rebekah's trust has very little money in it. If you are interested in helping financially, you can visit and click on the donate button on the right hand side of the screen. Any money received there can be used for Rebekah's medical bills. We would appreciate it.

We really enjoyed the garden we had last year. It was our first year of ever having one. We overdid it on a lot of the veggies, but we learned a lot in the process. Daddy got the ground ready and helped on and off throughout the growing season. Grandma C & Grandpa helped with the planting. Mommy did a lot of the work with the garden - help planting, rototilling, harvesting, etc... This year, Mommy can't really help plant or harvest, so we are trying to decide what to do.

Mommy can't do much and Daddy is overloaded having to do his normal work plus help Mommy plus do many of the things Mommy usually does. As time goes on, Mommy can do less and needs more help. There are only so many hours in the day and only so much energy.

After meeting with the Occupational Therapist and Physical Therapist last week, several things became clear. We need the bathroom remodel discussed above. Mommy needs to have an adult (capable of lifting) with her at all times. Mommy needs to have a hospital bed so that she can raise the head and raise the feet to get comfortable and to help get in and out of the bed. The bed came last night. The girls are sharing a bedroom again and Mommy & Daddy's bed has moved into what was Rebekah's room for Daddy. We need to get bunk beds for the girls and then move dressers around.

In general, it means that we can no longer "get by" without having a lot more help. It really hits hard. Mommy spent much of the meetings with the therapists in tears. We are working on putting together a formal group to help with all these tasks. If you want to be included, please let us know.

The front yard is a mess. It got torn up pretty bad when we put the new sidewalk in. It was going to need to be replanted. Since it wasn't very level, Daddy has been working on trying to get it ready to plant and to get it level. The weather hasn't exactly cooperated with that. So we need some decent weather and Daddy needs time and the ability to get it done.

The medication trial that Mommy is on has been trying to get approval to increase the dose of medication. While I hoped the medicine I got this month would be at the higher dose, they didn't have approval yet and sent the old dose of medication. So I don't know if they get approval if they will send out higher dose medicine before the next batch I'm supposed to receive in two months. I have hope that the higher dose might help stop symptoms from getting worse (or at least make it happen more slowly). The dream world would be that it actually makes things better. But I suspect that is a pipe dream.

We signed the girls up for a week long cancer camp for cancer kids and one sibling this summer. The girls have not been to this one of the camps before. Sarah is just now old enough and we didn't figure Rebekah would handle it well on her own. It is a sleepaway camp without parents. They seem to be excited to go. That will be in late June.

We are trying to do some things with the girls and for the girls, so that they can have some fun times and some lasting memories. It is hard, sometimes, to figure out what is right and what are the best choices.

Our friend Genia from Alaska is planning to come down and spend part of the summer with us to help out. She'll be bringing her little brother and her dog with her. We enjoy having her with us and look forward to having the extra help. She very much wants to know what to expect. We often wish we knew what the future would be like. We just don't know how this disease will affect Mommy. It affects each person differently and so we just have to take it a day at a time.

We had a friend drop by last weekend with a chest full of frozen meals that she had prepared for us. That was a delight! Thanks Robyn! Your thoughtfulness is truly appreciated.

Sarah last week set her stuffies and horses up in a row and started to teach them. She starts off "Today class, ... we are ... here ... to learn ... about God." "What are you going to teach them about God?" I asked. She asked me if I would help her and I told her that she could do it. "What do you know about God, Sarah?" "He sent Jesus to save us." she said. "OK. What else?" "Jesus died on the cross for us." "Good, Sarah! What else do you know about Jesus?" "Um, I don't know." Long Pause. "Oh yeah, he rose again on Easter." "You are so right, Sarah. See you do know a lot about God and Jesus." It was really neat to see her wanting to tell about God & Jesus.

Thank you all for continuing to check in on us, pray for us and encourage us. We appreciate it! I know there is more to tell. I just can't think of it right now.

4 Shared:

At Thursday, April 08, 2010 3:37:00 PM, Blogger Debbie Dunham Left a thought...

I wish I had answers and I wish I lived closer!

At Thursday, April 08, 2010 8:28:00 PM, Blogger Valerie Left a thought...

I wish I lived closer, too. I continue to keep you and the family in my prayers.

At Friday, April 09, 2010 9:22:00 PM, Anonymous Anonymous Left a thought...

I also wish I were closer and could help in some way. Prayers for you.

At Tuesday, April 13, 2010 3:06:00 PM, Anonymous Anonymous Left a thought...

You're in our thoughts daily.


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