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.

Saturday, June 30, 2007

Side Effects and More Side Effects...

The last few weeks have been filled with side-effects (and possible side-effects) from the radiation and treatment. It is really rather discouraging. While it could be much worse, I wish we didn’t have any problems.

First, there are Rebekah’s teeth. Thankfully, she only had one cavity and Dr. Wilson was able to put sealants on her teeth (to protect them now and in the future). When Dr. Wilson looked at the bitewings, they look normal. The teeth buds that should be there are and look about the right size. Radiation can stunt growth, so it is possible that the teeth buds don’t grow like they should and she can have trouble with her adult teeth. For now, it looks ok, but we don’t know for sure what the future will hold. The good news is that we aren’t seeing problems now. We just don’t know how they will look in a couple of years. One day at a time.

Then there is Rebekah’s vision. We were told that she could have anything from blindness in both eyes to cataracts in the left eye. So far, her right eye is fine and the left eye is seeing 20/40, which in the grand scheme of things isn’t too bad. Is it lazy eye or is it radiation damage? We just don’t know. Since there really isn’t much to do to repair radiation damage, we treat for lazy eye and see if it improves. So we continue with patching the right eye for about 3 hours a day to strengthen the left eye. We could also be seeing the start of cataracts, but we have to wait and see.

Then there are Rebekah’s ears. She definitely has fluid on the left ear. The ENT (ear, nose and throat) doctor doesn’t want to put a tube in it because then it would probably just constantly be draining (kind of like her nose and eye). His thought was that as long as the pain was able to be handled with Tylenol or Motrin he would leave it be. I forgot to bring up the balance issues – she’s had horrible balance for a while now. We had to cut our last horse riding session short because she had no balance on the horse and kept trying to fall off. I put in a call to his office but haven’t heard back, so I’ll need to follow up on that. The other thing we have to think about is that if we do anything to “open” up the ear (whether it be a tube or a cut to drain the fluid) is that the tissues are damaged by radiation and may not heal like they should. That can be an issue, too.

We’ve been trying to get a neuropsychological evaluation scheduled for Rebekah. It is something that her Neurodevelopmental Pediatrician suggested we get before Rebekah goes into Kindergarten and is listed on Rebekah’s cancer post-treatment plan for 2 years post-treatment (which would put it February 2008). There are a very limited number of choices as to who can do it – stay at Rebekah’s cancer treatment hospital (the doctor is new and their schedule is a year out), follow the doctor who recently left Rebekah’s cancer treatment hospital or go to the other children’s hospital in town.

If we choose to stay at the hospital where Rebekah’s cancer treatments were done then the doctor would have easy access to Rebekah’s charts and it would be considered “in network” with the insurance so we’d get the best coverage possible. But, she is scheduling over a year away.

If we choose to follow the doctor who left Rebekah’s cancer treatment hospital, we could get in quickly (they are scheduling a few months out). I scheduled with them for July after they told me that they were “in network”, only to find out that they can only get advance approval from the insurance company under “mental health” and then are considered out of network. After the doctor sees Rebekah, they might be able to use a diagnosis code that moves it to a medical condition and back to “in network”, but they can’t guarantee anything and want payment up front. It would mean us potentially having to pay quite a bit of money. And then, do we want to start the process with someone that we are either going to leave or we are always going to be fighting to get better insurance coverage or just plain paying a lot. It didn’t seem to make sense to start there if we weren’t going to continue there.

Then there is the “other” hospital in town. The doctor there is well known throughout the country and we’ve heard him speak several times. He has a remediation program that helps children “learn to learn’ and he works intensely with cancer kids. He generally likes to work with kids that are 6 and older, so we haven’t really considered his program. But, Rebekah will soon be 6 (in December). He would be considered “in network” with our insurance, so we should be able to get the best insurance coverage possible with him. And, at least according to his office, he is the only pediatric neuropsycholgist in the area that is board certified. We could get in with him in October, but they suggest we wait until after she turns 6 and they can really do a “full” evaluation. They generally will do evaluations every 2-3 years, so they suggested against doing a “brief” evaluation before she turns 6 because she wouldn’t be due for another one for 2-3 years.

We opted to go to the “other” hospital and schedule for after Rebekah turns 6, so we’ve got an appointment scheduled for the first week in January. We might be able to change it into December, but we’ll have to wait and see. Meanwhile, his office asked for the most recent developmental evaluations that we have and for something to show where Rebekah’s radiation was.

We never got anything from radiation oncology to show us her radiation field. We had one big discussion with them before we started that identified all sorts of areas that could be affected and discussed all the worst case scenarios. It was an overwhelming meeting and we’re lucky that we can remember any of it. Having something to show where her radiation was and the volume to the different areas has been something that has really been bugging me lately. Several of the specialists have asked recently “how much” radiation was received in certain areas. I believe it is something that will be very important in the future. And it is always better to get it now as opposed to later – at least I figure it is more likely that I would be able to get something closer to her treatment than farther away from it.

So, I put a call into Radiation Oncology to ask for “something” that shows her radiation field. They had to see what they could do and call me back. They sent me some “pictures” on paper. They are color pictures and on 11x17 paper. So much for being easy for me to make “copies” for doctors and such. I called back and asked if they could save them to a cd or similar. The lady who answered was going to have the physicist call me back because he was the one to help me. He called and he’s going to do some screen shots, but that is the best that he can do (short of printing more of the same).

Meanwhile, when I look at the radiation field printouts (in my non-doctor ability), it really scares me. There is a lot of area of the brain that has received radiation – like most of the left half. Much of that isn’t high doses, but it is still radiation. Both eyes have received radiation with the left getting high doses and the right not so high. Both ears have received high doses of radiation. No wonder we’re seeing problems. I’m surprised we’re not seeing more problems with the right ear, too. It sure makes me think and wonder what we’ve allowed to be done to our little girl. Having it in my hands really makes it more of a reality.

It has been an emotional time for me as I deal with all of this. There have been many appointments and some good news and many “we just don’t know what will happen” comments and a variety of “there isn’t a lot we can do to fix the radiation damage” comments. Not exactly what a mommy wants to hear.

Potty training isn’t going very well. We just have to take it a day at a time.

Our friend Genia (who lives in Alaska) was visiting with some of her friends recently (who also live in Alaska) and mentioned Rebekah. Her friends knew about Rebekah and had been watching her blog and praying for her for quite some time. They have relatives (I think) who live in the neighboring town to us and had heard about Rebekah at church. Wow! I always find it interesting to hear how people have found out about Rebekah.

Hope you are all well and have a happy and safe 4th of July.

7 Shared:

At Sunday, July 01, 2007 11:32:00 AM, Anonymous Anonymous Left a thought...

Hello to all of you. From one who knows about side effects, I know words offer little comfort. Long after "the battle" is over, we are left to manage the damange while others forget. The cost of cure is just too high.

We have had many neuro psych evals with Madeleine having so much radiation to her brain. We have had evals from all three docs in Portland as well as one at Duke. In my opinion, it is worth getting on Dr. Loss's schedule. The oncology clinic should be able to expidite an appointment as she has always made oncology kids a priority. If not, you may contact her directly by email or phone and have better luck. I have that info, if you want and can contact me directly.

I will pray for your strength and Rebekah's complete healing.

God Bless,

Kathi O'Brien, mother to Madeleine

At Monday, July 02, 2007 7:29:00 AM, Anonymous Debbie Left a thought...

Thanks for the update. I've been concerned about not seeing anything for a couple of weeks. Hang in there and let us know if we can do anything for you!

At Monday, July 02, 2007 8:44:00 AM, Anonymous Anonymous Left a thought...

Wow. A lot to consider. Rebekah is lucky to have you both to help her through this. I am so sorry that she (and you) have to suffer the aftermath of the "cure". What choice was there? Our Onc told us that by allowing the treatment, we are choosing life (the continuation of life) regardless of the long term effects. I agree, but that does not negate the loss that we as parents feel. Keep on keeping on. Blessings to your family.

Mark Matteson

At Monday, July 02, 2007 6:03:00 PM, Anonymous Anonymous Left a thought...

I'm keeping you all in my prayers! There isn't a day that goes by where I do not think of all of you! I will pray for you all even more.

Sarah Mathia

At Monday, July 02, 2007 11:46:00 PM, Anonymous Anonymous Left a thought...

It's overwhelming to me how you can keep your sanity through all of it all. I know it is only by the grace of God. I continue to pray for Rebekah and you.
Leanne from Pa.

At Tuesday, July 03, 2007 7:35:00 AM, Blogger JodiTucker Left a thought...

Praying for dear little Rebekah AND for wisdom and strength for Frances especially as you take her to these many appointments and therapies. I can't even imagine since I have not "been there."
Praying anyway!!

At Wednesday, July 04, 2007 8:31:00 PM, Anonymous Anonymous Left a thought...

I've been thinking about all of you today and wishing you a Happy 4th. Prayers too, for you as you take Rebekah to all she has to do, and for Rebekah as she goes through all this. Scott - I'm keeping you in my prayers too, as you work to support your family and deal with all that goes with it. Happy Brithday to Rebekah's mom and Grandma M. Hugs to you all. Aunt Annie


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