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.

Friday, January 25, 2008

Emotional Times

It seems like we are being pulled in so many directions... We're working with the insurance company, salvage company, contractor, roofing, electrical, plumbing, hvac, carpet, etc... And that is just for the house. It is mind boggling...

And, on top of that, we have to care for the girls. February is proving to be a busy month for Rebekah. Friday the 1st we see the eye doctor who will probably refer us to a surgeon for cataract surgery. So we'll probably have a surgeon appointment and maybe even a surgery scheduled... Friday the eighth we see the Orthopedic doctor at Shriner's for an annual followup. Friday the 15th are the quarterly cancer scans (MRI and Chest CT) and somewhere around there we need to get her panorex done. Tuesday the 19th Rebekah has an annual followup with the ENT. Friday the 22nd we'll do a heart echo and EKG to look for damage from the chemotherapy (we do one or both of these every February). And Tuesday the 26th, we'll meet with Oncology for the results of all the testing. Then in March, Rebekah will get into Audiology for a hearing test (another annual test). Just trying to get things scheduled and not have to take Rebekah out of class is a chore in itself. All of that is on top of school 4 days a week and Speech therapy twice a week.

In early January, we took Rebekah in for a Neuro Psychological exam. Yesterday, we spoke with the doctor to get the results... It isn't pretty... She scores very low for her age in most areas, although she was at age level for comprehension if she could point and didn't have to use her verbal skills. Between the low scores and her inability to sit at task for very long, the doctor suggested a diagnosis of mental retardation. While the "label" stings a bit (at least for us parents), it could open doors for resources that are only available to people with a mental retardation. He suggested that we focus on the behavior issues (inability to sit at task and such) and that we should find a behaviorist that specializes in mental retardation and work with them.

It has been a very emotional couple of months and I'm just not seeing an end in sight. At the same time, I look at the issues that Gage and his family are dealing with and I know that my troubles are few in comparison. Last night, as I was feeling sorry for myself, I looked at the most recent posts on the Ewing's Sarcoma list that I'm a part of and there are a few families who posted yesterday that they are dealing with recurrence and running out of options. It reminded me that we have a lot to be thankful for. That doesn't make our life easy, but it does help us to remember to put it into perspective. It also tends to make the nerves just a little more tense as we approach scan time. Ugh! Please pray that Rebekah's scans come out clear.

Thanks for keeping us in your prayers and Gage's family, too! Not to mention the other families that we care about.


Saturday, January 19, 2008

Pray for Gage Dole

You may remember us talking about Gage. He is just a little older than Rebekah and was diagnosed with Ewing's just a little while after Rebekah. Six months after finishing treatment, he was diagnosed with Leukemia (AML) and underwent treatment for that. This week, he did follow up Ewing's scans and they have found a mass at the original tumor site. He will undergo some additional testing next week. They are praying that it is benign and nothing to worry about. But the fear is that it is a Ewing's recurrence. Ewing's recurrences are very difficult to treat. They have said it could also be Lymphoma (another form of cancer, but one that might react to chemo).

Please pray for his family. Waiting and not knowing is very VERY difficult. Please watch his site and encourage them with entries in his guest book. Pray it is benign.


Wednesday, January 16, 2008

Life Continues...

Life continues to be hectic around our house. We've had snow days, and late start days, etc... Poor Sarah, who goes to school one day a week, had a snow day last week and a late start (which meant her class was cancelled) this week. The two weeks before that were Chistmas break. So she has been out for a month now.

We are having more concerns about Rebekah's eye. We've been trying to "treat" for lazy eye by using a patch over or putting drops in the good eye to exercise the bad eye. She has not been real cooperative and today she refused (and nearly put her into a tizzy) to do the drops. When I said we could go get patches, she agreed. After we bought the patches and I put one on, she immediately took it off saying that she needed two eyes to see. It just breaks my heart to see her like that. So, it looks like the next step will be surgery. We'll let you know more, when we know more.

It has now been more than a month since the fire. Most of the house has been cleared of "stuff" and they have started (this week) the contractor has started some of his work - like removing drywall and insulation in the areas that were hardest hit by the fire. We still have some things to look through, but we've isolated them. We just need to have time to get through it.

Potty training is not going too well. I'm trying to push harder at it. We'll see if it works.

Mommy and Sarah stopped by to see Daddy at the Camping Trailer at the "booboo" house this week. We asked Sarah if she wanted to see her playroom and she said she did. The walls were down to studs and there was lots of drywall and insulation all over the floor. Sarah thought it was funny that she could see through the walls. She also told us, numerous times, that the playroom was "messy". That seems to be what she remembers about seeing the house. That and the fact that there were no beds in her bedroom.

Thank you all for your support and prayers. It helps us get through these days. We are very grateful for the friends and family that is here to help us.


Thursday, January 10, 2008

Another Week Goes By

It has been over a week without an update and we apologize. Life has been very hectic.

Rebekah is back to school though we have missed several days already with "snow days" and yesterday we received a phone call to come pick up her up 1/2 way through the day. She has been fighting something that is affecting her body in different ways (fever, tummy, tired, etc) but nothing is quite standing out. Obviously this has us concerned a bit as we are not sure what is up. But overall she is as happy as ever to be back in school.

Rebekah and Sarah continue to enjoy playing in their "new house" (the rental) and their big playroom. They were even able to go outside with mommy and make a snow man earlier this week.

I think, though am not certain, that the warm clothes they are in are all replacement gifts, thank you to whoever...

The realization that she is going to need surgery sooner rather than later on her eye is getting pretty strong. She continues to favor her good eye and even goes so far as turning her head to that side to look at things. At the last eye doctor's appointment they wanted to give it one more chance to see some benefit before going in and removing the lens that has been damaged by the radiation and replacing it with a man-made lens. Our biggest hope is that the damage is only to the lens. We know that is wishful thinking but we can always wish and pray right? And the lack of symetry on her face as her right side grows normally and her left side doesn't (again, a result of the radiation) is getting more pronounced which only means those surgeries are getting closer.

The burned up house continues to be an issue with Rebekah and she really doesn't want to go back there. Finally this week (1 month after the fire and still no lights or heat) the house is empty and we are ready to start tearing out the walls, ceiling, carpet, flooring, etc. etc. etc. The only thing being is that the insurance company check to pay the contractors with still has not cleared the bank. THANK YOU so much to those of you that have helped with donations to us or to Rebekah's Trust. All of this time spent trying to deal with the house means less income for mommy and daddy and even though things are insured, you pretty much have to put out of pocket first to buy the basics before the insurance company will reimburse you. It is becoming very clear that the insurance company trys to make it as difficult as possible just so you will go away, or not bother to document it all, or in many other ways just save them money. It is going to be a long process.

Again, THANK YOU so much for your ongoing support, prayers and words of encouragement. It really means a lot to us to know that Rebekah continues to touch people throughout the world even if we are not updating things as much as we might like here.


Tuesday, January 01, 2008

Happy New Year!

Who knows what 2008 will bring? Prayers, please.