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.

The Results...

For those of you wondering, we thought it would be good to fill you in on the eye exam last week and the dental work yesterday.

First, the eye exam went well. Rebekah didn't cooperate perfectly, but she did cooperate enough. Her left eye (the one on the side affected by the radiation) is stable - it hasn't really changed since April when we started using the eye patch with a concern that she had a lazy eye and that is why the left eye is weaker than the right. There are a few possibilities - lazy eye (which can be treated with the eye patch) or damage from the radiation (clouding of the lens which could be the beginning of cataracts) are the big ones. She doesn't have cataracts now, so there is nothing to do for that right now - if she gets them (which our radiation oncologist said was a good likelihood) then she'll need them removed. She sees at 20/40 in the left eye, so it isn't horrible. Aside from correcting the vision (with glasses) and removing cataracts there isn't a lot we can do if it is damage to the eye from radiation.

Meanwhile, we keep doing the patching aiming at 3 hours each day and see her in 4 months. We also continue to do put the gel in at night and drops during the day. If we see any signs of infection or changes to the eye, then we come in sooner.

The radiation oncologist told us that she would likely be blind in the left eye and possibly the right. In the absolute best case, she would probably have cataracts that would need removed. So far, we consider ourselves pretty lucky. Thank you God!

Now for the dental work... The expectation was that Rebekah would be sedated (with a full general anesthesia (including intubation - tube in her throat helping her to breathe) and have two cavities to fill (both on the left side - thanks again to the radiation). Once they had her sedated, they would do bitewings to really see the teeth and see how many cavities there were, so it might be more than two. While she was sedated, they would get a good cleaning on the teeth and put sealants on as many of the teeth as they could. That was the plan.

Once they did the bitewings, there was only one cavity that needed filled. Woohoo! Dr. Wilson was able to get sealants on all the teeth she wanted and in general she said Rebekah's teeth looked really good. We've apparently been doing a remarkable job of keeping them clean. I think God must have had something to do with that. We had months where I couldn't even get a toothbrush near Rebekah's mouth and I'm lucky if I can get a quick once over on all her teeth (it is nowhere near 2 minutes) once a day and some flossing. I feel like I haven't done that good of a job, but I have done the best that I reasonably could.

Rebekah's mouth continues to hurt, but the tylenol or motrin seems to be helping. She is a bit wobbly today and I'm not sure if it is because of the anesthesia yesterday or because of the fluid in her left ear. We're trying to have a lower key day.

Next Monday we have a busy day. Thankfully Grandma A will be watching Sarah, so it will just be Mommy and Rebekah running everywhere - Speech Therapy at 9:00, Speech Therapy (with her device) at 11:00, Dentist follow up at 1:00, Hearing test at 2:40 and ENT at 3:15. What a day that will be! With the hearing test and ENT appointment we will see how the radiation has damaged her ear. She's had fluid on it for over a month now. She may need a tube put in. We'll have to see what they say.

Please pray that we continue to have healthy eyes, healthy teeth and that we are able to get some good answers on the ear issues. Praise God for all the ways He has protected Rebekah so far. We have seen it time and time again. Thank you God!

Back In The Hospital Again

...this time for Dental Surgery.

We were up early and off to the hospital, general anesthetic and right now Rebekah is under with her Dentist working on her teeth to try and repair some of the radiation damage. We are not sure exactly what she is going to do as she has not been able to get good exams without having Rebekah sedated. One nice thing is that this Dentist has a very good knowledge (expertise?) of radiation damage. Thank you so SO much to Josh's mom (his link to the right) for putting us in touch with Dr. Wilson!

All in all things went okay so far. We had a long time to wait after getting here early (when they said we needed to be here). That always causes a problem and by the time we were ready for an IV and some work Rebekah was really agitated. This notwithstanding the fact that she had been given some Versed.

Melissa from Child Life was available (thank you God!) and she brought a baby doll that also has tubes, pokes, etc. etc. for Rebekah to play with. Actually Suzie (the baby doll) has been retired but Melissa brought her out of retirement because Rebekah knows her so well. Here is Rebekah and Suzie:


While we are waiting mommy and daddy are eating at the little hospital cafe. Oh the memories.

Prayers for a safe, successful treatment and for Rebekah to come out of general anesthetic as well as possible.

Happenings

It is hard to post after the last one. It has been up there for a while as our way of honoring Rachel and it seems that any post after that isn't nearly as important. Even though we did not "know" her personally, Rachel's passing has been emotional for us as we have been following her through a list serve for families with the same type of cancer as Rebekah. Rachel and her family have been the hopes and dreams of many of us - they were the ones who we looked to for hope with any recurrence. It may seem selfish, but we wanted Rachel to make it so there would be a chance for us if recurrence happens.

It has been a fairly normal week. Earlier this week we found out that Rebekah's summer classes are going to be at a different school than where she has been. Because there are "closer" schools our local school district who pays for her bussing decided they would not pay to transport kids to Rebekah's summer school. The alternative was to have her go to a new school for 1 month and not continue with the same teachers/staff who know her (she is already going to a new school for Kindergarten in August). It turns out the decision was a "general" one for all of their special ed little ones and a quick phone call and they made a special exception for Rebekah to continue with her class through summer. We have an awesome school district when it comes to helping.

Today mommy and Rebekah are at the eye doctor all morning trying to get a good exam and current update on damage. Next Tuesday is Rebekah's dental work under full sedation.

Today is mommy and daddy's 16th anniversary. I LOVE YOU HONEY!

In Loving Memory ...

of Rachel Lynn Hansen (April 20, 2000 - June 8, 2007)

Please keep the Hansen family (mom Jodi, dad Mark, big brothers Lance and Blake) in your prayers. Rachel lost her many year battle with Ewing's Sarcoma today. We can only imagine what the family is going through right now. Our heart it breaking for them.

Edited to Add: This is particularly difficult for us too because Rachel and her Mommy and Daddy have been our hope and inspiration. We have looked up to them for their fight and their ability to go beyond, far beyond, what the doctors have told us could ever be possible. Please check her site and, if appropriate for you please add to her guestbook.

For right now there are a couple of things in their post today that jumped out and we wanted to share here: (Please see their who post at the link above or to the right.)

"And so I write one more journal entry that I never thought I'd have to write. As I sit here with tears streaming down my face, I wonder how so many of us misinterpreted our "promises" from God. We are thankful for all of the angels that filled our home and gave Rachel peace. We truly feel that Rachel wasn't telling us the full story about what the angels were telling her. Her and the angels had secrets. I guess that's okay because what would we have done with the information?
...
Rachel is perfect and whole. Rachel will never again endure any pain. Rachel is with our Lord Jesus Christ and with her Nana Eide and her Papa Hansen. We are thankful that they were there to guide her passing into the next dimension. We're pretty positive that Rachel went running into their arms and once she saw how beautiful it was there, she chose not to come back. We can't say we blame her."

The beautiful white rose that has touched so many of us in so many ways is by and used with permission from Australian photographer Lisa Hocking Please see her blog and thank her for its use.

School Planning, Ear Ache, Kiddo Updates

I'm not sure what I was thinking when I thought we might get back to a "normal" routine. Is there really any such thing as "normal"?

We have been busy. Daddy has been busy in the office after being gone for two weeks. Mommy hasn't had a lot of time to help him. And we're all trying to catch up on sleep after vacation. Earlier this week, the girls took a 4 hour nap. Tonight, they really didn't want to go to bed.

Rebekah was complaining Tuesday night that her ear hurt and she wanted booboo medicine for it. I gave her some tylenol and asked if we needed to call the doctor and see if he could look at her ear. She said yes. So, Wednesday morning I called and scheduled an appointment with one of the other Pediatricians in her doctor's office (her pediatrician didn't have any appointments available - except for one that would have meant no school). The doctor looked at her ears and they looked fine (no infection). The left one looked gray and flaky (thanks to radiation), but not red and inflamed.

She used the machine to test her ears and the left one tested pretty flat. It looks like she has a fair amount of fluid in the ear. The same was true in early May when we were in. And she complained about it hurting a couple of days while we were on vacation. So it seems that she has probably had some fluid for nearly a month. Starting to be chronic. She suggested that we see an ENT and wanted to know if we have seen one before. So, I called the ENT's office to schedule an appointment. If there is concern of chronic fluid, he will want a hearing test before he sees her. So I've got those scheduled for the 25th of June. Hopefully it won't bother Rebekah too much between now and then.

Today we had a planning meeting at the local grade school to plan for Rebekah's Kindergarten (IEP Meeting). We met with the Kindergarten teacher, the special education teacher, the speech therapist, the nurse, and the special needs coordinator. The normal Kindergarten schedule is from 8:25am to 2:45pm on Monday, Wednesday and Thursday. The staff was open to anything including using the regular Kindergarten schedule or having Rebekah attend 5 half days or any combination. We are going to start the year with having her attend the regular 3 full days and add an additional morning to use for therapies, repetition, etc... We will have to evaluate how well she is doing with it as we start into the school year, but at least we have an idea of what it will look like.

Rebekah will be in the regular classroom for most of the time with some modification to "projects" to fit her capabilities. Part of the reasoning for the "extra" day is to avoid having her pulled out of class for therapies and other special needs (at least to the extent that we can avoid it). For the most part, we'll continue the goals that are in her current plan. We will need to reevaluate regularly as we see how she is doing.

She'll have an aid with her all the time and she'll have multiple aids that work with her (so she doesn't think she has a second mommy). The aids will need to know her special needs and concerns - and she's got a few of them. We (Mommy and Daddy) put together a list of some of our concerns for Rebekah and took several copies of the list with us to the meeting. Some of the concerns are medical (eye problems, ear problems, brittle bones, and needing sunscreen and a hat to protect against solar radiation), some relate to the therapies she needs (speech, PT, and OT) and some relate to social and self care issues (toileting, needing to interact with her peers, and accustomed to early afternoon naps). It is one more step in the education process.

I spent some time Monday and Tuesday working on Rebekah's therapy schedule for the summer. Then Wednesday found out that her school schedule will be changing. I wasn't expecting that one. So much for planning! I think we can still make it all work, though. It just isn't what I thought it would be.

Gage is home now after his bone marrow transplant. He still has to be very careful and he isn't out of the woods yet. Please continue to pray for him as he recovers.

McKenna is in Boston preparing for Proton Radiation treatments. Her mom and dad are with her. Dad will be there for a week or so and then come home. Please pray for the family as they are split up and will be for several weeks as well as for McKenna as she goes through the treatments. Pray that the treatments will be successful and with minimal side effects.

Josh had his wish granted last week - a pirate for a day. Check out his page for the details. Also, he made the local news. Here is a link for you. He continues to have issues with his esophagus. Josh's doctors have come up with a possible plan, but it might or might not work and would not be "easy". His parents have decided not to move forward right now, but are not eliminating it for the future. Please pray for them as they continue to make decisions for Josh.

Rachel continues to have issues. They don't really know the cause of all of them. Her family continues to believe that she will be healed on earth. Please continue to pray for her family as they wait for the cure. Check out her page for all the details.

Home, Camping and Back Home

We made it home safely late Thursday, packed up the camping trailer Friday morning and headed out to the beach for a ham radio convention that we help with every year and made it back home Sunday evening.

Our flights home were pretty good. Once we boarded the plane in Columbus, Sarah fell asleep while we were still at the gate. One of the flight attendants came and talked with Daddy and told him that Rebekah was invited into the cockpit to visit with the pilots. She went straight for the controlls and seemed to have a good time. The entire flight crew was affected by Rebekah. She was treated like royalty. Once again, she touched some lives. After she got back to her seat, and before we moved away from the gate, she fell asleep. She slept for most of the flight. She would wake up occasionally and grumble for a few minutes and then go back to sleep. Sarah slept for about two hours.

As we were approaching Phoenix, Sarah started to get fussy. I thought her ears might be bothering her, so I put some drops in her ears. She seemed to settle down, so either the drops helped or something else was the matter and it resolved itself.

The flight from Phoenix to Portland was reasonably uneventful. The girls were reasonably well behaved. We had lots of activities for them and snacks, etc...

Our plane landed a little before 10 pm Pacific Time. It was nearly midnight by the time we got our bags, found our transportation (the white stretch limo again) and drove home. It took a while to get the girls into bed and to sleep. Sarah was very insistent that she have her Dora mimi (music). The cd was somewhere in our baggage, but it was clear that she was not going to settle down any time soon if I didn't find it. Since I wanted to get to bed myself (we had been up for about 21 hours), I searched through the bags and found it. Daddy and Mommy fell into bed shortly after that. We hoped that the girls would sleep in and we would be able to get a good night's sleep. No such luck! They were up at about 7 am.

We packed up the camping trailer and headed to the beach for the weekend to help Grandma M with a ham radio convention. The girls love to go camping and love to spend time with Grandma M, too! The camping trailer was really just for sleeping, but the girls had a good time "camping" and helping Grandma.

We made it back home early this evening and are looking forward to another night in our own beds... There is nothing quite like home... Now it is time to head towards bed and we get to start the "normal" routine back up tomorrow morning.