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, June 26, 2008

Scan Results, Eye Glasses and Big Girls!

The very short story is that there does not appear to be any recurrence of the cancer. For that we are thankful. As always there are some questions that we don't have the answers to. When you scan a kiddo this often, there are bound to be changes. Some are expected and some spark questions. The questions may mean another scan or they may mean wait and see.

The good news is that the spots in the lungs and lymph nodes that were seen in March and then not seen on the Pet/CT done a week later “are no longer seen.” Also, there are no signs of cancer in the mandible (jaw) where the tumor was originally located. The blood counts all look good. These are all good things!

Now for things that are “stable” – enlarged lymph node in the right neck, mucosal thickening in the paranasal sinuses, opacification of the left mastoids.

Now to the questions - according to the radiology report, there is a linear collection of cysts in the left temporal lobe (of the brain). These have grown in size and are “significantly more prominent than they were in February”. The February radiology reports indicate that they were similar to previous scans. “The etiology and nature of these cysts is not known.” The thought is that these are from the radiation, so doc is suggesting a wait and see approach. The next scans will be in August.

Also noted on the radiology reports, “there is some atrophy of the left parotid gland” and “there is also some atrophy of the left submandibular gland.” These are both salivary glands. We knew that they would likely be damaged by the radiation and that saliva production might be reduced. So this is not unexpected news.

Now what? We breathe a little sigh of relief and we wait for the next round of scans. We pray that the cysts are indeed nothing to be concerned about. And we love our girls and enjoy every day with them.

Both Rebekah and Sarah have been wearing big girl underwear most days, although they are still in pullups at night. We are having some days without any accidents. Both girls had been accident free for 4 days, so we took them to Dairy Queen for ice cream treats to celebrate. Yesterday was not a good day for Sarah, so today she wore a pullup. She did really good at keeping it dry and clean, until the end of the day. Rebekah had an accident today while playing outside, but she has been really good otherwise.

Rebekah started summer school this week and has been able to go to school in big girl underwear and keep them dry at school. What a big girl she is!

Last Friday Rebekah had a follow up with the eye surgeon. He is pleased with the results he is seeing. Rebekah is seeing at 20/50 in the left eye (compared to 20/100 just after surgery and not being able to see before the surgery). He gave us a prescription for eye glasses. Her left eye will have a bifocal and the right eye will have no correction. They will also have transitions lenses so that they will darken when she goes outside. That will help to protect her eyes from the sun as well. And we continue to patch the right eye every day for about two hours. She is not a fan of that - always saying "eye patch later". But once it is on, she will often soon forget about it.

We weren't sure how well she would take to wearing glasses, but they have become part of who she is. Now we are working on getting new glasses for her with the new prescription.

We still have lots of boxes that need unpacked and dealt with. Little by little things are coming together. It just doesn’t seem like it is happening quickly enough. Hopefully we can get a lot done between now and next weekend when we are having a gathering at our house.


Thursday, June 19, 2008

About 8 weeks ago...

... we started down a roller coaster of a journey as Rebekah's last set of scans came out with what appeared to be cancerous spots throughout her lungs. A week later we then went for a different type of scan that didn't show the same "spots." All they could tell us was "we don't know and you need to give it 6-8 weeks and then we will scan again and see what is there."

Well,today we are at that scan again point. The girls are just stirring in their beds and soon we will be off to the hospital for a days worth of testing. Both girls wanted to sleep in their "hospital jammies" (kiddo gowns) so won't they be surprised at the hospital when Rebekah rolls up already in a gown...

These last weeks have been difficult to bear emotionally but there have been a lot (too many) things to keep us busy and our focus elsewhere. Now waiting for the results of these scans will be back to the fore front. We should hopefully know something next week and hopefully NOT before. No news is good news. "Come in now..." is bad news. Keep us all in your prayers please.

9:42 AM Update. Rebekah is now under. She did really good with directing everybody on what they needed to do and fussed a little more than usual over the IV but did "far better than we expected" said the Nurse. We have the delight of having Sue, the very first nurse Rebekah ever had when we were first diagnosed. We credit Sue for the fact that even this morning when we jokingly gave Rebekah the choice to go to the hospital or to Chucky Cheese she wanted to go to the hospital!

We had a bit of a time with with the CT staff. For 80+ anesthetics over the last 3 years Rebekah has gone to sleep in Daddy's arms. This time she said she wanted to do it "on her own like a big girl." So she went into the CT room in the nurses arms and Daddy waited outside the window. The CT tech tried to tell Daddy he couldn't be there. Daddy explained that he would be until Rebekah was under and that normally Daddy would have been IN the CT room. Although the tech didn't seem happy with that answer, Rebekah was out and Daddy was gone before it got any more difficult.


Monday, June 09, 2008

Lots of Stuff

Sorry it has been so long since we've posted. Life has been hectic. Rebekah finished Kindergarten just after Memorial Day. We turned in the keys for the Rental House that same day. What a noteworthy day that was!

It has been very timeconsuming to pack up everything in the rental house and get it moved to the "all better" house, get the rental cleaned, and work on unpacking at the "all better" house. We still have lots of boxes that need unpacked, but we are making progress, however slowly. We need to figure out what is missing and what we need and that is a chore, too.

Mom and Rebekah caught a 24 hour flu bug. Not a good thing at all. Rebekah, Sarah and Daddy have all been fighting a cold. Rebekah and Sarah went to the doctor yesterday. It looks like Sarah's cold has turned into pneumonia, so she started on antibiotics. Rebekah's lungs were fine and it doesn't look like hers has turned into a sinus infection either, so we will watch her carefully and if she gets worse then we'll look at getting her on antibiotics.

Mommy seems to have pulled a muscle in her abdomen, probably from moving too many boxes around. So that makes life a little more interesting. It isn't too bad, but it is annoying.

We had a group of friends from church help clean the rental house and that was great! Thanks everyone.

The girls got a package in the mail from Darlene and her clan. They got lots of cool Dora stuff - fruit snacks, a velcro ball game, swimming goggles, visors, etc... They had to have some fruit snacks right away. The visors and ball game disappeared into the playroom and we see them quite regularly while they are playing. Thanks Darlene & family - the girls LOVE the stuff you sent. It made their day!