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.

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.

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!

Rebekah Needs To Tango

We met with Rebekah's IEP team yesterday to discuss 2 things: the results and future of her mental retardation testing, and her speech/communication needs. The two topics became inseperable as her biggest need is to be able to communicate. Even though her IQ tests come in at just under 50 (thank you radiation to the brain), her comprehension testing is at a reasonably high level - that of a 3 1/2 year old. Unfortunately her ability to express is way behind. In an effort to try and help that we introduce the Tango:

More Info At: http://www.blink-twice.com/

For the past several months Rebekah has been undergoing a trial/test period to see if this device would work for her. The testing involved whether any communicative device would be helpful, and if so, whether this was the right one. The good news is that right at the end of the trial period she "Got It" and really started to grow and be able to use it, expressing things she can't in other ways.

And that is also the bad news. Now that she is at the end of the trial period they take it away. The local special ed district that is helping so much with Rebekah only has one to share between all the potential needs and it is given by the company as a trial. In order to obtain one for Rebekah we need to buy one - at $7,000.00!

The first choice (of the district) is that the parents pay for it out of pocket. Obviously that is not a valid choice for most parents of special needs kiddos. So we then get into the second option and that is looking for outside funding. We are looking into options that include insurance, grants, school district funds, etc. With her diagnosis and the objective (as well as subjective)test results, the communications device qualifies as a "medical neeed." But that still only gives a slight hope for insurance coverage and even then it would only be partial coverage. And of course, trying to pursue all the available options takes time and she doesn't get to keep the one she has while that time plays out. What is really frustrating is that she qualifies for and is getting "extended school year" because she has demonstrated that she will loose ground if she doesn't have continuous exposure to her educational programs - but then they go and take this away and say "Sorry. If it takes a while to get one, hopefully she'll be able to pick it back up whenever you finally do."

SO - if you know of any grants, businesses, etc. that just happen to have $7,000.00 to go to the needs of a special little girl, let us know. Otherwise, please help us and pray that God opens up an avenue to make this possible. Even if we don't, HE does know where the funds can come from.

On a different note, the girls went into daddy's office the other day to show off their pretty dresses. Sarah has a new question, "Do I look pretty daddy?" She asks it all the time. And Rebekah models after her with, "I pretty too." It just melts your heart. Here are daddy's pretty girls that morning:

Rebekah Makes Daddy Cry / New House

We are sorry for not providing more updates more often. Words cannot say how much we are burning the candle at both ends.

Most important to tell are some very special words from Rebekah that brought daddy to tears today in church. We were in worship time singing praise choruses. One of those choruses had the line "And You died and rose again." Rebekah was in daddy's arms and was singing along up to that point. Rebekah's idea of singing is "blah blah blah blah blah blah..." When we sang "And You died and rose again." Rebekah stopped saying blah blah blah and looked daddy right in the eyes and said "Daddy, I not dead anymore!" Daddy broke into tears.

For those of you who might be new to this blog those words from her mouth were SO much more than spiritually true. Less than 3 years ago Rebekah crashed on the operating table during one of her surgeries and had to be revived. We talk about it every now and then (how often can something like that come up???) but never had any clue that Rebekah remembered or comprehended what happened. Apparently she does. She followed up "I not dead anymore" with something like saying she was here with daddy now. She didn't say it but the impression daddy got was that she actually remembered not being here, and maybe being with Jesus?

That's the heavy. Let us share some significant changes in our life over the last 5 months. In literally 5 months and one week we went from this:


to this:


We are delighted.

Pray for the things that we need to do in order to get the rental house ready to turn back over to the landlord as well as somehow figuring out how we are going to get all this stuff unpacked!

We are sleeping at the "All Better" House

We were finally given the "keys" to the all better house. Last week, we had our "stuff" that was cleaned after the fire (or at least most of it) delivered and we had our new appliances installed. That meant that we could think about moving in. So we decided to do that Monday evening. We moved the beds and some "essentials" and continue to work on unpacking boxes at the all better house and packing boxes at the rental house. This coming Monday will be the big "move out of the rental house" day, so we have to get everything packed and ready to move.

We are living in limbo with a house full of boxes and not sure where anything is, but it is coming together slowwwwwwly.

The girls each spent two weeks on antibiotics and had some ups and downs. Both missed some school and both had bouts of diarhea. Now that we are back home, they are sharing a bedroom again. They are both excited about being "home" and about sleeping with sister.

The girls continue to check on their plants to see if they are growing. Two of the 4 boxes are growing so far and we keep watching for the other two. The Sunflowers they planted are growing, too. And one of the trees seems to have some new growth. Now to get them to the all better house...

It feels good to be HOME and together a little more. Now we just need to get the rest of our stuff here and unpacked and be able to have more quality family time.

Girls are on Antibiotics

Both Rebekah and Sarah are on antibiotics. Rebekah started them on Friday and Sarah today. They have both had a cough for a couple of weeks that just hasn't gone away. Thursday afternoon we got a notice from Rebekah's school saying that there had been some possible cases of whooping cough at school. I didn't really think that what either of the girls had was whooping cough, but it did get me thinking. Friday, Rebekah woke up with diarrhea. I decided to take them both in.

No whooping cough for either of them. Rebekah has a sinus infection - not uncommon for her. So doc started her on antibiotics. Sarah's lungs sounded good and her ears looked good and her nose was running clear. Doc gave me a prescription for Sarah in case she got worse - fever, etc...

Last night, Sarah started in with fevers - nearly 102. Rebekah hasn't had a fever and has pretty much been acting "normal". It doesn't seem like it is getting her down. Sarah, on the other hand, has been pretty emotional and very clingy. She has periodically asked for an icky tummy bin. Tonight was the first time she has actually needed it. As she was walking to bed she got sick and after being in bed for about an hour she was sick again. I'm hoping that she will start to feel better quickly, now that we've started the antibiotics.

Rebekah's diarrhea lasted all day Friday. That made life interesting with a Pediatrician appointment and an eye appointment. We had to take lots of changes of clothes and pullups. But we survived it. I figured it was only going to get worse after starting her on antibiotics, but so far Friday was the only day of it and she has been doing ok since. She is drinking some Dora drinkable yogurt, so that should help.

Saturday, we got to go to OMSI (Oregon Museum of Science and Industry) thanks to Candlelighters. I wasn't sure we would be able to go based on how the girls were doing Friday, but we decided to go anyway and hope for the best. Daddy had an appointment, so he wasn't able to come with us, but we were able to talk Grandma into taking his place. The girls had fun! They got to plant sunflower seeds and each got to bring a tree home. We will have some fun getting those planted and watching them grow.

A couple weeks ago, we planted some seeds (thanks Shawn!) in planter boxes so we can watch them grow. So far we haven't seen any results, but we check on them every day. We bought some hanging baskets and starter plants and we are watching them grow, too. With them being in boxes and baskets, we can watch them at the rental house and take them with us to the "all better house". Sarah says it is the "all better house" and Rebekah says it is now the "two booboo house". Haven't found out what the two booboos are, but it is getting better.

Rebekah's eye appointment went well. She is now seeing at 20/70 in the "bad" eye. She is doing a great job of wearing her glasses and a fair job of wearing the patch. We have one more week of drops and then I think we'll be done with those. Doc decided to wait on updating the eye glass prescription. Her vision is still changing and he thought it would be better to wait. Her next appointment is in two months. Meanwhile, we should be working on wearing the patch for two hours a day - an increase from 1 hour of a day. Little by little, we'll get there.

One day at a time... Thanks for caring for us and praying for us. We appreciate it!

Rebekah's Eye and Sarah's Hair

Time just flies by...

After two weeks of wearing a metal shield over her eye to protect it after surgery, she is now able to be without it. She has been doing a good job of not rubbing it. We got her glasses back while she was still wearing the shield. They have a little correction for the good eye and nothing right now for the bad eye. We have a follow up appointment this Friday and hopefully we'll be able to get a good eye exam and find out what kind of correction she needs and then have to get a new lense for the glasses. It took 2-3 weeks the first time and we hope it won't take so long the second time.

Meanwhile, we are trying to patch the good eye for about an hour a day to exercise the bad eye. She is not a fan of the patching. It is a struggle to get her to keep it on. The patches we have are like big bandaids with sticky all around and a pad over the eye area. She can easily get her fingers underneath it and pull it off. Each day, it has taken at least two patches because she has either been so upset crying that the patch won't stick any more, or she just rips it off and crinkles it up so I can't put it back on. Usually after a little fuss and fight, I can get her to keep in on for a reasonable time. I haven't put the braces back on, but if I have to I will. And trying to keep the glasses on while having the patch on is difficult, too. But, at least we are having some success. We are supposed to start at about an hour a day and work up to two hours, so we're not doing too bad.

Generally speaking, Rebekah is doing a good job of wearing her glasses. She will take them off at times and I have to tell her she needs to wear them. Some times she will put them back on herself and other times I have to help her. But she is wearing them most of the time. It is hard to push the issue when the really aren't helping much to improve her eye sight. After we get the prescription changed, they should really help her. And they do help to protect the eye, which for Mom and Dad is an important reason to do it.



Sarah has been objecting (and that is an understatement) to having her hair brushed. It is a fight to get it done. So last week, she got a hair cut. Her first full hair cut (and not just the bangs). She was not real happy about going, but she handled it ok. We had it cut to shoulder length and now the curls are gone. It is sad to see them go, but she is a much happier camper now about brushing her hair. It is not without problems, but it doesn't take nearly as long now as it did before.



She came home saying her hair was like her sister's. Since then she's decided that her hair is like Dora's. In any event, she is happy with the haircut and that is what is important. For mom and dad, it is a little bittersweet. Rebekah's curls were taken from her by her cancer. And we had to take Sarah's curls away from her.

I think both girls are looking older...

Rebekah seems to have decided that the BooBoo house is all better. Now she is calling it the "BooBoo Better" house. She has not forgotten that she helped make it better by giving it medicine. The house is starting to come together and we can actually start visualizing being back in it.

Well...

...we know that you are all waiting with bated breath, as were we.

We received a phone call from the same doc that last week started things out with "its not good." Only this time he had surprise in his voice and said that multiple docs had looked at yesterday's scans and they can't find what they thought they saw last week. PRAISE GOD.

There are still some areas of concern but from the preliminary reading of the 9 pages of medical jargain that was just faxed to us, it looks like they are ongoing concern areas that have not changed drastically over time and that too is good news. After we get a more thorough reading of these reports we might have some more details.

We can't chalk this up to anything othe than prayer. Thank you all for continuing to lift us up.

Here We Go Again

Right now we are sitting at a hospital that we have only been to one time before. It is very nice, not stark white but rather quite warm, and the staff is wonderful. Rebekah was just put under and we are in the cafeteria waiting for her to be done, about 2 hours or so. Then the long wait for results...

1 Week Eye Follow Up

Rebekah's eye looks like it is healing well. They did a vision test. Rebekah never cooperates real well with them, and today was no exception. But we did get her to semi-cooperate for a while before finally giving up. They showed her vision in the left eye (the one that had the surgery) as 20/100. It might have even tested better if she was willing to cooperate longer. Doc was really impressed with that good of vision this quickly after surgery. One thing it tells us is that her brain IS using that eye - which was a concern leading up to the surgery.

She still wants nothing to do with having the good eye covered with an eye patch. They try to do that for the eye exam. She really hasn't been willing to wear a patch since she started having such difficulty seeing out of the left eye. We will need to start patching the good eye in another week, so we'll have to work on that one - "selling" it to her. Meanwhile, she should continue to wear the shield for a total of two weeks - so until next Monday. If she is being really good about keeping hands away from her eye - not rubbing it and such - then she could have the shield off for some of the time. I think it is probably best to keep it on and keep it protected, but we may give short opportunities while well supervised to have it off. Once the shield is off, we start patching the good eye. Starting at 1 hour per day and moving up to two hours per day. Please pray that she will tolerate it.

We got a new set of drops that are just an anti-inflammatory (and no longer has the anti-biotic in it) for the next few weeks. We'll give it 4 times a day for this week (we were giving the other one every two hours while awake, so this is a decrease) and then next week will be every 3 hours and then every two hours...

Our next appointment is scheduled in two and a half weeks. I explained to doc about the Chest CT results and the upcoming scan and that we didn't know for sure how things would play out, so we might end up rescheduling and not get in quite when we should and that the eye issues may have to play a second seat to the other. One day at a time...

We talked last night about having to get up early and go see the eye doctor. Rebekah wanted to know if she was going to get "sleep booboo medicine" - that is what she calls the anesthesia medicine. Sarah wanted to know if it was a "skip breakfast" day - that is what we (the whole family) have to do when Rebekah has anesthesia. We explained that today would be just a doctor visit but in a few days we would have a skip breakfast/sleep booboo medicine day. And they were fine with that. How many kids do you know who would ask that kind of question when talking about seeing the doctor?

Meanwhile, we wait for the Pet scan. We are on pins and needles. It is difficult to plan anything right now. We hope and pray for the best and yet know it could be the worst. It is a terrible feeling.

Update

Well, its not exactly "immediate" but we will have to deal with it. The PET scan that will hopefully give us some direction is scheduled for Thursday morning. Hopefully that gives enough time for some miraculous healing. Prayers for peace before then please.

Thank You For...

...all your wonderful outpouring of support. We can't tell you how much it has meant to us this weekend. It is still early Monday and we don't know anything more than we did Friday evening.

Thoughts have been pouring through our heads that we thought were gone. We want to share them and at the same time we want to put them out of our heads completely. February had been two years since the end of treatment and we finally had started to breath, letting our guard down a little bit. And now this, trudging up all sorts of things that a parent should never have to go through, let alone multiple times.

Rebekah is doing great and doesn't seem to have any clue or indication as to what might be going on. We hope and pray this can all pass as "some sort of mistake" or miraculous healing yet again.

Please grab on to your little ones and pay just a bit more attention to them today or this evening. For any one of us it could be the last time you ever get to.

As soon as we get any more results, test times or ??? we will let you know.

Not A Good Way...

...to end the week.

In February they were supposed to have done a Head MRI and a Chest CT. They somehow got the orders mixed up and did a Head MRI and a Head CT - both were clear. We finally got the Chest CT made up today.

We were not home for too long when the oncology office started calling. The first time we did not get to the phone and they did not leave a message. Then they called again. Our doc, thankfully, was very much to the point. "We have a problem." he said. He went on. "Multiple 7-9mm 'tumor type' nodules visible in the lymph nodes and lungs."

Before calling us they had already talked with the surgeon. The surgeon won't cut into her without further tests as the areas are so "deep" that it is "going to do severe damage." He wants more confirmation tests on "what and where" he is going after.

Right now they are trying to schedule us for a CT/PET scan "as soon as possible" but it is now after 5:00 on Friday so we are pretty sure we won't hear anything until Monday.

It has definitely been a roller coaster week.

Doing Better

After fighting with Mommy, Rebekah finally fell asleep in Mommy's arms around 5pm Monday. Mommy asked Daddy to heat her up some dinner. That (maybe the smell, maybe the moving around a little) woke Rebekah up. She decided Mommy's dinner looked pretty good and she wanted some. She ate half of Mommy's and still wanted more. So, Daddy made us more and she ate a good portion of that, too! I guess after having not eaten all day, she was pretty hungry. By now, she wasn't fighting as much to get her eye patch off, but every now and then she was getting her fingers underneath and trying to pull it off. She needed to be watched carefully. We kept a close eye on her all night and finally (about 11pm) she told Mommy that she wanted to keep her patch on and help the doctor to take it off in the morning. After that, she did really well. Not only that, but SHE wanted to tell the doctor she was going to help and she didn't want Mommy telling him.

She did very well with leaving it alone for the rest of the time until the doctor's appointment. Once there, the nurse went to take it off and Rebekah wanted to help. The nurse (and Mommy - because Rebekah wanted Mommy to do it) did most of the work and Rebekah got to do the last little bit. That seemed to make her happy! She was not at all happy when she was told that she would need to have the shield put back on. After doc examined her, she didn't want the shield (metal cover with a bunch of little holes in it and a cloth around the edges - so that it is soft on the skin) put back on. She kept grabbing at it to pull it off. Not a good sign for being able to keep in on and this time Mommy was by herself with Rebekah.

That is when Doc told us about the "Elbow braces" they have to prevent kids from being able to bend their elbows and get their patches off. Doc was surprised I hadn't heard about them in Recovery the day before. That would have been nice. Anyway, we got a set for Rebekah and put them on her arms. She was not happy about it, but it made the ride home safe. I told her that once we got home, if she promised to keep her hands away from her eye, we could take the arms off and keep them off, but if she kept touching her eye or trying to take her patch off, the arms would need to go back on. Well the little bit of "lack of freedom" has been working. So far, she has done fine with keeping her patch on and not bothering it.

Every two hours (while we are awake), we have to take the patch off and put drops in her eye (anti-biotic/anti-inflamatory). I know she doesn't like having the tape removed, but she does a really good job of holding still and letting me do it. She isn't a big fan of the drops, either, but she is a trooper.

Just a little bit ago, while the patch was off, I covered the good eye and asked how many fingers I was holding up. She did a good job of answering correctly. Then she didn't want me to cover her eye, but she wanted to do it herself. This is big improvement from a week ago when she wouldn't let you cover her "good" eye and would make it very clear that she needed two eyes to see. She had a big smile on her face when she realized she could see with the bad eye. And then she said "me like surgery". Wow, what a statement from a little girl who has just been through all that trauma.

Sister Sarah came home yesterday evening and she's been doing a good job of staying away from Rebekah's eye, too. She wasn't too sure what to make of Rebekah when she first saw her. She wanted to know why Rebekah had a patch on her eye. We explained it to her and she seems to be fine with it (although she keeps asking "why, why, why" just like always). Just a few minutes ago, Sarah came running to Mommy saying "Mommy, we need you. Rebekah's eye patch is coming off". Rebekah was sitting still, arms away from her face. Once side of the patch had slipped out of the tape and the patch was hanging. Mommy put it back on and added another piece of tape to help. They are both being "big girls" about it and helping Mommy.

The shield needs to stay on until at least next Tuesday (our next appointment). And the drops are supposed to be for 10 days. Part of the healing process will include re-training the eye, so we'll need to patch the "good" eye again and make the bad eye do all the work. Pray that Rebekah will handle the patching and her brain can be re-trained to use the eye.

Thanks for the prayers, they have been helping. We know there is still a long road ahead for this process.