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, July 30, 2005

A Bad Day

Just a quick update...

Rebekah had a bad day. She still isn't eating very well and is getting upset pretty easily. She is also running a fever off and on - up to 100.1. Mom is concerned that she might be a bit constipated, too. Mom thinks she may have some sores in her mouth and gave her some Mouthwash today. Please pray that she feels better in all these ways...

She and her sister slept in until about 8am this morning. Grandma M came around 9 this morning and spent the day. Once Grandma was here, Rebekah didn't want Mommy to do anything for her. She only wanted Grandma. That is until Uncle Chuck showed up and then neither Mommy nor Grandma would do and she wanted Uncle Chuck to do everything for her.


Friday, July 29, 2005

First Week of Radiation is Complete

When we woke Rebekah up this morning, her fever seemed to be gone (or at least diminished). Mom didn't think it was necessary to check her temperature this morning based on how she felt and on the fact that they always check her temperature before starting radiation. When they checked at radiation, her temperature was just about her normal. Please pray that the fever stays away...

Radiation went ok today. Rebekah woke up pretty grumpy from it this morning - worse than she has been - and was pretty crabby. She fell asleep in the car on the way home - which was probably a good thing.

The Radiation Oncologist said that everything seems to be staying lined up. He was a little concerned about whether her mask would keep her from moving around. With little kids (who don't have big noses or chins to keep them in the same position) it can be an issue. The Xrays and Cat Scan they did this week all show her in very close to the same position - I think he said within .03mm which is "very good". Typically on Fridays the Radiation Oncologist will check in with each of his patients and make sure everything is going ok.

Sarah went with us this morning and friend Debbie and her daughter Kelsey met us and cared for Sarah at Radiation. Kelsey let Sarah walk all around - which she loved. It was great to have them both help! Thanks much!

We made it home about 8:45 this morning. After yesterday, it seemed really early. Because she has anesthesia each morning she can't eat or drink anything after midnight or so and I don't want her to have food right after waking up from the anesthesia either so it isn't until we get home that she can eat. Rebekah has been doing really well the last few nights with not having water in bed with her. She has a flouride toothpaste (to protect her teeth from the radiation) that she uses before going to bed and she can't have food or drink right afterward and then fluids have to be cut off when Mom and Dad go to bed anyway. The last two nights she hasn't even asked for the water. Yeah! It is really tough to tell her no.

Once home, Rebekah didn't want to sit in her chair to eat. Instead, she wanted to sit in Mom's lap and eat. She did a pretty good job of eating Cinnamon Life cereal with milk. Mom told her that if she sat in her own chair she could feed herself, but if she sat in Mom's chair or Mom's lap then Mom would feed her (she is really messy with milk in her cereal). Nonetheless, she wanted to sit in Mom's lap.

She would eat a few bites and then get some cereals for Sarah (who was eating Cinnamon Life, too). She would get her own cereal out of the box and help Mom pour more milk into the bowl. She sat for a long time eating and ate quite a bit (at least in comparison to the last few days). Sarah ate quite a bit, too.


Thursday, July 28, 2005

Rebekah's Running a Fever

This evening Rebekah was feeling warm, so Mom checked her temperature. The under arm temperature was 100.1. At 100.5 we would probably have to head into the hospital for a 48 hour stay for antibiotics and blood cultures. Mom has been packing bags to make sure that she and both girls would be ready to go at any time and they could stay tomorrow if needed.

Please pray that the fever subsides and that her body is able to fight whatever caused the rise in temperature.


It Has Been a Long Day

Mom was up at 4:30 this morning, getting the car loaded up. Both girls were woken up and diapers changed and Rebekah dressed for the day and then loaded in the car with some help from Dad. Sarah was dropped off at Aunt Tiffany's for the day (or at least the morning).

Rebekah was asleep and in treatment and Mom was waiting for her by about 6:25. A little before 7, we loaded a sleeping Rebekah into the stroller and made our way to the hospital for her Cat Scan which was on the schedule for 7:15. We waited, while they got everything ready and at about 7:15 we strolled into the cat scan room (at which point she woke up and wanted up). Mom got her up into her arms while the anesthesiologist got her medicine flowing to put her to sleep again. Once asleep, mom layed her down and then headed to the recovery room to wait for her.

The scan didn't take long - only about 15 minutes (if that) and they brought her into recovery in a crib. We let her sleep for about a half hour before starting to try to wake her up. Once awake, she wanted to play. After the anesthetic she is very wobbly, so she couldn't really get down to play. After a short while, we headed over to clinic. She wasn't thrilled with being confined to the stroller or Mom's lap at clinic, but mom didn't want her getting hurt.

Clinic seemed to be running behind, which is frustrating when 9 am are the first appointments of the day. They did try to get patients cared for as quickly as possible. Clinic is short staffed, so I realize that some times they aren't able to get to everyone as quick as they would like.

Her counts came back with a critically low Platelet count and doc really wanted her to get platelets, so we stayed for a Platelet transfusion. Day Treatment (where she receives transfusions) was really busy and they asked for us to stay at clinic for a while. It was about two hours from the time doc said she needed the transfusion until it was actually running. At one point there were four or five children's cancer patients in Day Treatment. That pretty much filled them up. The platelet transfusion itself only took about an hour to run, so that was good.

Her ANC is 350, so we need to be really careful around "sick" people for the next few days.

Her weight is down. As of today, her weight was down 10%. That is the magic number. If it goes down any more, we will need to do something. There are a couple of medications that we can give her to increase her appetite - one of them is a steroid and one of them is an antihistimine. Doc was ok waiting until Monday to see where we are at. I am hopeful that her appetite will pick back up and she'll start gaining again. Please pray with us that it does.

Finally, about 3 this afternoon we made it home. We had to stop and get Sarah from Grandma A. She had picked her up from Aunt Tiffany's. Thanks to Aunt TT and Grandma A for watching Sarah. Tiffany was amazed at how much Sarah was eating and doing. Sarah is sure getting to be a big girl.

Last night, a lady from church brought us a meal which was delicious. It was great not to have to worry about cooking. She brought some groceries as well, which was truly appreciated. The cinnamon roll bread seems to have been a hit with Rebekah. Tonight we have a lasagne to cook up with salad and garlic bread. I think Tiffany said it was from the same family. It is wonderful not to have to worry about dinner. The meals and groceries have brought tears to my eyes in thankfulness. I am amazed at times of the thoughtfulness and caring of others.


Wednesday, July 27, 2005

Second Radiation Treatment Done

Mom was up at 4:45 this morning, loading up the car and getting ready to go. Both girls were woke up to change diapers and loaded into the car with Mom. Dad helped get them up and loaded. At a little after 5:15 Mom, Rebekah and Sarah left and headed to Karen's to drop off Sarah. Thanks Karen for watching Sarah! Then Rebekah and Mom headed into Radiation Oncology. We were a little early - thanks to not much traffic.

By 6:30, she was asleep and Mom was waiting for her. They continued to do some double checking today, so it took a little longer than normal. Tomorrow we'll have the Cat Scan after treatment and then need to go over to Clinic, so it will be a longer day. They told Mom today that Thursdays will be days that they may do some of the things that take a little longer - like Cat Scans and dressing changes, etc... Thursdays, the surgery schedule starts a little later so the anesthesiologist has a little more time.

By 7:30, she was into recovery and stirring a little and by 8:00 we were on our way home. Rebekah slept off and on in the car.

Once home, she ate a little. Please pray that her appetite picks back up. She didn't eat much yesterday and hasn't eaten much today, either. The drop in appetite could be more related to the chemo than the radiation (at this point). She needs to keep her weight up, or we may have to consider a feeding tube. We pray that she doesn't need one, but keeping open minds. Mealtimes and snack times are trying times, often taking more than an hour and including lots of encouragement and assistance.


Tuesday, July 26, 2005

First Radiation Treatment Complete

We are home now after the first round of Radiation. We got out the door a few minutes later than we wanted this morning, but made it to our appointment on time. Mom, Dad, Rebekah, Sarah and friend Sarah (who spent the night with us last night) headed out this morning at just after 5:30am. There wasn't much traffic to worry about at that hour.

It seemed to take them a little longer to get things ready this morning than they anticipated, so we got a little late start. It was close to 7:00am by the time she actually went in for treatment. The nurse and the radiation oncologist came by and told us "she's doing great" a few times while she was receiving treatment. The first day they do a lot more "checking" than usual, so the treatment takes longer. They have told us to anticipate the treatment itself only taking 15 minutes or so and the whole process being pretty quick. We'll have to see how the next few days go. Friend Sarah helped with little Sarah and was great!

Thursday, after Radiation, she is scheduled for another Cat Scan to confirm that everything is lined up right (a sort of "Quality Control"). We have our appointment at Clinic that day and probably had some extra time anyway, so that works.

Rebekah still has a very raspy voice and it seems to be getting worse. We're not sure the cause. Mom's afraid that she is coming down with something. Uugh! The doctor wasn't concerned about it yesterday.

Yesterday, during the transfusion, Mom spent quite a bit of time trying to get Rebekah to lay down and go to sleep. Finally she fell asleep... About a half hour later, she woke up sick to her stomach and threw up. Then the nurse gave her some anti-nausea medication and that seemed to help. But she wouldn't go back to sleep.

By the time we got home, she was a very tired and very crabby girl. She would say she wanted to eat and take a few bites and then be "all done". Then she would play for a few minutes and say she wanted to eat. We decided that she needed to go to bed early.

She did not sleep well and continued to wake up, screaming and thrashing around. She also wanted water, but she couldn't have any of that after midnight because of the anesthesia. Mom didn't get much sleep. Hopefully things will go better.

After getting home, both girls got something to eat. Rebekah was more interested in eating off Sarah's tray (and helping Sarah eat) than eating what was in her bowl. But at least she was eating something. Rebekah is watching some cartoons and seems "content" at this point.


Monday, July 25, 2005

Mid Day Update - Transfusion in Progress

Sarah is staying with Grandma A and Rebekah and mommy went into the the clinic for regular blood tests today. Her hemoglobin was real low and they needed to do a transfusion so that is going on right now. Assuming no reaction to the transfusion, she should be in a better spot to start radiation tomorrow with "fresh" blood. Apparently there is also some concern about Rebekah's voice being somewhat "hoarse" or "raspy." Don't know what that is all about?

Sorry about no update yesterday. The girls had a fun relaxing day with Grandma A being her about 1/2 of the day. Rebekah started developing a bit of an attitude late in the day and had to go off for a nap - she did tell Grandma she was tired.

Mommy and daddy worked hard on a lot of physical things around the house. Daddy finally finished all the wiring and most of the insulation on the playroom remodel and the electricity out to the barn (which kind of had to be done right so we could pass the inspection on the playroom remodel). We can now (once inspections are past) actually have something plugged into the barn without tripping breakers or being unsafe!

Continue to pray for good results and protection from the radiation which should start tomorrow (pending any MORE last minute changes).


Saturday, July 23, 2005

Cancer, ALS and a Lot of Emotions

I wrote this about a month ago, but didn't post it right away. I guess now is as good a time as any to post it. By the way, I was able to get to see my aunt this week. I took Sarah with me while Grandma M watched Rebekah.

I'll warn you up front that this post may make you cry. It is tough for me (Frances) to write, but it is on my heart. Read on at your own risk.

The last time we were in the hospital for chemo, I went out to the nurses station to ask a non-urgent question. There was a nurse there (from a different area) that was chatting with a couple of nurses on the floor. She was talking about someone she knew (I assume a good friend or relative) who was recently diagnosed with ALS (also known as Lou Gehrig's disease). This individual had said that he wished he'd been diagnosed with a brain tumor instead, because at least with a brain tumor there is treatment and the hope for cure. With ALS, there is no cure. This hit WAY TOO CLOSE to home for me. Cancer, with the possibility of treatment and cure, is much better than ALS, with no cure and only the ability to treat symptoms. This story brought tears to my eyes and many thoughts to my heart. We should be thankful for a cancer diagnosis with possibility for cure.

Those of you who know me (and my family) very well, know that ALS runs in my family. My dad died of it 6 years ago, my grandfather died of it, my great grandfather died of it and many other family members have died from it. Because of that, I have a 50% chance of getting it some day, if I live long enough. It can hit anywhere between age 30 and age 70. What you may not know, is that in May of this year my aunt was diagnosed with it, too. As if I (and my family) didn't have enough to deal with emotionally in Rebekah's cancer, this is one more burden for us to bear. She, likely, doesn't have too many months to live. I struggle with wanting to spend some time with my aunt, but not wanting to spend time away from my girls to do it (and can't really take Rebekah with me). It is one more big stressor in my life. In many ways, I have to push it out of my mind in order to just cope.

Tonight, I was watching an episode of Doc where a young dad was diagnosed with ALS. It just brings so many thoughts to my mind. Thoughts of my dad. Thoughts of my aunt. Thoughts of Rebekah's illness. Thoughts of the possibility of getting ALS myself and what that would mean to my family. Thoughts on the statement "I wish it was a brain tumor".

It reminds me that there are many people in the world in worse situations than I am in. Although my world seems like a wreck and so overturned and everything is overwhelming, I need to be reminded that we have hope. Our God is the ultimate Healer. He can do all things. He can bring Rebekah back to wholeness. Even if we wanted to only look at earthly wisdom, the doctors are hopeful that treatment will be successful.


Worrying about Fever, Asking for Prayer

Rebekah is running a low grade fever this evening. Each time she has had the last set of chemo drugs she has had a fever to some degree. The first time we had to be admitted for fever above 100.5 (it was 102) and have iv antibiotics and the second time she had low grade fever and was generally lethargic and had low counts to where she needed a blood transfusion as well as iv antibiotics. This is the third time she has had this set of chemo drugs. So the current fever has me worried about what to expect.

Please pray that the fever remains low grade and that her energy level remains up and that her counts remain high enough that she doesn't need a blood transfusion.

These next six weeks are going to be rough. Please pray for peace and rest for Mom and Dad and that Rebekah be protected from the harmful side effects of radiation (hearing, vision, diet, etc...). One of those side effects is Mucositis. This is an inflammation and sores in her mouth and throat. The doctors have said to expect it and that it may be bad enough that she won't eat enough and we may need to consider a feeding tube. In fact the doctor wanted us to consider putting one in while we were in the hospital last week. Anyway, Mucositis is one of the side effects that we should expect quickly. Let's pray against it and against anything that prevents her from eating what she needs to. Perhaps we (or more accurately God) can shock the doctors with limited side effects!

God has done great things in keeping Rebekah protected so far! We pray that he continues to do so. Please pray and get everyone you know praying. We sure need it and we know it is working. People will say to us that they don't know how we do it. Our only answer is that it is not us, but it is God. We don't know how we do it either, except for by God's grace. Praise to HIM! HE cares for all his children!


Both Girls Slept in Late This Morning

Both girls slept in until 9:30 this morning. That is almost never heard of! Mom was able to rest until about 8:00. And on top of that, they both slept pretty well so that Mom didn't have to get up with them (or at least Mom didn't hear much from them - maybe she was that tired). Rebekah hadn't slept well at all the night before and Mom was up with her much of the night. It was probably as much the heat as just generally not feeling well, but she wasn't complaining of any booboos or needing a new diaper or being sick to her stomach and wasn't feverish.

Dad was up about 7:00 working on the project he had planned for the day. Friend Steve is here helping him. Thanks Steve! Luckily, they didn't start making much noise until after 10:00 so the girls weren't woken up by it.

Grandma M has been at our house for the last few days. It has been great help! She had to head home late this morning to get some things done at home. She is taking a class for 3 weeks, so she won't be able to help much except on weekends for the time being. Grandma has had to do many things (preparing foods, changing diapers, getting her into jammies, etc...) for Rebekah because Rebekah insisted that Grandma do it and she didn't want Mommy to do it.

Rebekah is also being very independent these days. She wants to do almost everything herself and gets very vocal when any adult tries to do things for her. She still has her spunk! We have to see that spunk as a blessing and not complain about the independence. There are so many little blessings to be seen. I think that too often we don't spend the time to consider the little things that are truly blessings

Sarah has started taking a few steps on her own now. Grandma M said that she even got herself standing up in the middle of the room without any help from her or using her toys. Mom hasn't seen her do that and Dad refuses to see anything that resembles walking and becoming independent. She is starting to eat "big people" foods and doing pretty well with it. Little Sis is growing up way too fast! In many ways, time is flying by.

Thanks again to everyone who has volunteered to help watch Sarah while we take Rebekah in for Radiation. Several of you have offered to generally take a day each week and that is great help! I know it is very early in the morning, so that is extra special.

Hope you all have a great weekend.


Friday, July 22, 2005

More Doctors and Second Opinions

Rebekah has had a long day already. It is 3:30 in the afternoon and she has already been to two "new" hospitals and seen 4 new doctors for second opinions on her current treatment plan. In addition her teacher from her early intervention program is due here any moment to work with her - Rebekah has had to miss out of "school" since all of this started.

The readers digest of all morning at the second opinions is that everyone continues to concur on the need for the radiation and, even though the hospital we went to is a competing hospital with our current provider, no one there even suggested that we change. They all spoke highly of our current oncologsists (which we already knew and we do too!) and what was new to us was that they all had extremely high regard for our new radiation oncologist and the equipment he has available to him.

Basically we wanted to make sure that there was not something else out there that we were missing because we didn't "shop around." We have been and I am sure will continue to be extremely pleased with our current professionals, even if we are not pleased about the needed course of treatment. But we just needed to have that extra security to put any nagging doubt to rest. I guess we hoped the other hospital would have a miracle cure but we pretty much knew they would not.

We did get a call today from our radiation oncologist's office saying that he was out ill today and could not prepare the final steps for our treatment on Monday so that, the first actual day of radiation, was cancelled and we are now supposed to start Tuesday. For some reason we are not too upset about this...

Thank you SO much for those that have started to volunteer to help babysit for our radiation appointments. We have the first weeks needs mostly met and some liklihoods that some of these may be repeats throughout the following 5-6 weeks. THANK YOU!

Please pray for continued "miraculous healing" and protection of the good cells, her eyes, ears, and brain etc. from the radiation and no protection at all for any bad cells that might still be there.


Thursday, July 21, 2005

Frustration Sets In

Warning - this is not about Rebekah's health but a rant/rave into what my day has been like dealing with Insurance Companies - Lifewise Health Insurance.

More than 2 weeks ago we asked what we needed to do to schedule a second opinion on the need for radiation given the positive progress Rebekah was experiencing. They said that second opinions are definitely covered but that only a case manager at Lifewise could set that up. That mirrored what the other hospital said - they would need to have a conversation with the insurance company before we set up an appointment.

Unfortunately we did not have "all the forms" done for a case manager at the insurance company; we had asked for one during our very first hospital stay but the insurance company says they had never heard that. Finally today (1 1/2 business days before radiation begins at 6:15am on Monday) we get a phone call from the case manager - she has all the paperwork done. "GREAT," I exclaimed, "Can you help me set up a second opinion at the "other" hospital in town (Doernbecher/OHSU)?" The short answer was "no, case managers do not do that." Hmm, we were told we couldn't do it without their help and now they don't do it.

If we could set it up (out on our own here) she would present it to the medical director of the insurance company to get it approved and they would then pay the 80% of the consult fee they pay in network providers. His answer: "No, the other hospital is out of network and we have in network providers in Portland."

We are already seeing the ONLY in network provider and need a SECOND opinion. Their only suggestion was that "we could go wherever we wanted but they would only pay an out of network rate unless there were no other in network providers available..." "Ok," I asked, "so WHERE can I go for a second opinion that you will pay the contracted amount for since we are already seeing the ONLY in network providers in town?" The answer: "University of Washington..." They would pay for us to go hundreds of miles away but not to go across the street.

It completely eludes me that they will gladly pay out $30,000-$50,000 for radiation without batting an eye but balk at paying for a second opinion to make sure that is necessary.

Only through God's intervention we were able to get an appointment set for tomorrow morning and an agreement from Doernbecher/OHSU that we didn't need the money up front. We are grateful for that! I guess we will fight the insurance company again when the bill finally comes. Stand in line.

I knew it before but never lived it - reading the fine print as to what your insurance company actually covers or doesn't cover is scary and getting them to live up to their own agreement is even scarier.


Wednesday, July 20, 2005

Wednesday Evening - On The Way Home (Hopefully)

Rebekah had a pretty good day today. Neither of the girls slept that well last night so neither did mommy who stayed in the room with them.

Mommy spent the whole day with her without too many visitors. Grandma C came by during her lunch hour and fed lunch to and played with Rebekah while mommy and daddy went to the cafeteria for lunch. At dinner time daddy and Rebekah went for a walk around and around the third floor so mommy could go get some dinner. Other than that it was mommy, Sarah and Rebekah together all day.

Things are still looking good for going home around 9pm. So much so that daddy already has the trailer connected and all packed up - think we are anxious????

We want to thank those of you that have made some donations to the trust ( recently, it really REALLY helps a lot and we are very grateful. We also want to thank our friends at Our Place church for the Blockbuster video card. That has not been a treat that we have enjoyed for a long time so I am sure we will find a great time to rent some movies!

Things are definitely set to begin the 6 weeks of daily radiation therapy on Monday. Prayer warriors - put on your armor! And we could still really use some help babysitting Sarah during the mornings while Rebekah receives the radiation and recovers.


Tuesday, July 19, 2005

Ups and Downs and some more Diagnosis/Prognosis

Today, like many, has had its ups and downs. Rebekah was somewhat traumatized this morning with the changing of her dressings. It's tough having a "bandaid" that covers 1/2 of your chest being ripped off, the incision for the central line being scrubbed, and then everything being put back again. Having to do this every 5-7 days bothers her every time we come near her with dressings.

She got to do a lot of physical and occupational therapy today which she likes. In fact this afternoon she was doing so well that she got to actually go to the physical therapy room and climb steps, play on a balance beam, etc.

She had not eaten at all since we got to the hospital until this evening. With mommy and daddy playing eating games with her we got her to eat 1/3 of a chicken breast, a few bits of salad and a few bits of cake. Believe it or not that is a lot during chemo or for a week after.

There have also been some treatment updates. Speaking of eating, they would like us to install a tube into Rebekah's stomach to make feeding her easier once the radiation therapy starts next monday. It is a "just in case" she gets to where she cannot eat from the radiation burns in her mouth. At this point we are not going to send her to another invasive surgery just to deal with "just in case." We really need prayer that the side effects of the radiation don't touch her. We are asking and praying that she come through the radiation without any of the "guaranteed" side effects they tell us will happen.

We also had some conversation with the doctor about some more spots they are seeing on the MRIs and PET Scans. It seems as they look closer that there is some tumor cross over from the left side to the right side evident on the first set of Scan's. That section on her right side showed to be very active on the first PET Scan at the beginning of this. The most recent MRI shows a spot they thought was still active. Praise that the most recent PET Scan does not show "hot" or active. But again, just because it is not active or clear that it is cancerous doesnt mean that we don't have to treat it. The "good" news that they told us was that they only have to treat with with "regular" radiation and not "intesive" or "boosted" radiation that they have to treat much of her left side of her head with. See above for prayer on radiation.

Rebekah was given a bear today from some professional collegues and friends of daddy. Rebekah has named him "boo boo bear" Don't know why but she is pretty adamant about the name. He is looking out after her:

Please keep us in prayer. Rebekah is doing the best that could be expected but we are having some tough times.


Monday, July 18, 2005

Checked In and Receiving Chemo

It has been a long day. Neither Rebekah nor Sarah slept real well, so Mommy was up quite a bit with one or the other of them. It is tough when everyone is sleeping in such close quarters. The girls can wake each other up and then it can be real trouble. At one point Rebekah was thrashing around in her sleep so much that mommy was beginning to worry that she wouldn't get back to good sleep. Mommy started to say a prayer for her to be restful and she settled right down. God answers prayers!

Mommy and Rebekah went into clinic to have Rebekah's blood counts done to make sure that she could begin chemo, while Daddy and Sarah stayed in the trailer and Daddy was able to do a little work.

After they drew the blood for the tests, the nurse said that she had fluids to start any time and it was up to mom whether to start now or wait until we had the counts back. Mom suggested that we start them soon. Before they can actually start the chemo, her urine has to be tested and cannot be too concentrated. Since she hadn't drank much for breakfast (or overnight), mom thought it would be good to start early. As it turned out they weren't able to start until 7 pm, because of her urine tests (so it was good we started the fluids early or it would have been even later. This means that it will be late Wednesday (after 8:15 pm) before we would be able to go home (at the earliest).

Her counts were still doing well, so she was admitted. Once we had a room, mom called dad to let him know and he and Sarah came over to the room to check in. Rebekah had fallen asleep and slept for a couple of hours early afternoon. Rebekah didn't want to touch her lunch or her dinner. She did eat a variety of snacks and when Grandma A came she ate some cheese. Grandma A is spending the night with Rebekah tonight while mom, dad and Sarah stay in the trailer. Thanks Grandma A!

It was a day of waiting and waiting and more waiting (and changing diapers every half hour to hour to try to meet the parameters so that chemo could start). Rebekah did pretty well through it, except for not eating and not drinking much.

Please keep up the prayers for a good week, keeping away the mouth sores and nausea and sleep for Rebekah, Sarah, dad and mom.


An "outside" Prayer Request - Noah McKenney

With the miracles that we have seen with Rebekah and all of your prayer, we get lots of requests for prayer for other matters. All of them go into our personal prayer requests. We wish we could re-print all of them here on Rebekah's blog but there just isn't space and that isn't exactly what this blog is about. That said, other sick children do especially touch our hearts and every now and then we may tell you about someone we come across. Here is a recent request:

...another leader and I and three teens had the opportunity to visit CHOP (Children's Hospital of Philadelphia) to see baby Noah McKenney. He is the youngest son of a pastor at The Chapel in Ohio. Todd and Bethany McKenney have been living at the Ronald McDonald House for a month along with their other two kids (Selah---5 and Nathan---3) as Noah is in the intensive care unit at CHOP. He was born with spina bifada and then had a cancerous brain tumor which was removed at CHOP. He then started chemo and has not got past the first round since he is now on a ventilator and has problems with keeping his blood pressure stable and kidney functions working normally. He has nearly died a couple of times. On Friday morning, he looked like a sleeping (drug induced sleep) angel with many, many tubes in him. We all prayed together. McKenneys were just glad to see someone they knew from OH. They do not do a blog as far as I know and depend on word of mouth and e-mails to Chapel staff to get the word out for prayer.


Sunday, July 17, 2005

Back at the Hospital

Rebekah and Sarah are doing okay. They have finally gotten to sleep. I think the long hot day along with all of the excitement of camping, moving, etc. has caught up with them.

We made it from camp to the hospital about 9pm or so. All of the RV spots are completely full and we are not the only ones in our "secret" little over flow spot. We do appear, however, to be the only ones that know that there is power hiding here. Will have to keep that a secret.

Thank you very much to Greg and Christine for letting us stop by for a barbecue dinner and the games with Rebekah. She sure does love your bubbles and has not stopped talking about them since we left.

Tomorrow morning we go into clinic to get Rebekah's blood tested and make sure she is okay to start chemo. Then on to her room. Getting checked in is always a long hard day. Keep us in prayers.


A Hot Sunday Afternoon

Rebekah and Sarah both slept through the night pretty well but were up early at 6:30am. That was kind of difficult for daddy as he sat out around the camp fire talking with some new friends until about 1am. That was his fault though! Friday night Rebekah had fallen out of the bed but last night went real well.

Last night we home-made 100 donuts with toppings, frosting, etc. That is something the kids really enjoy. There was a scavenger hunt and then a big screen outdoor movie for the kids to watch. Unfortunately it was a bit too late for our girls though based on the time they got up it might have been a good idea anyway.

We are still sitting in the campground on this very hot Sunday afternoon. It is close to 90 degrees in the shade and about 75 in the trailer with the air conditioning running - one of the reasons we are still here. Most of the people have gone and we are using the opportunity to get some general cleaning done in and around the trailer - the kind of stuff that doesn't generally get done sitting in the parking lot at the hospital.

Once it starts to cool down we will head towards the hospital and get situated in the parking lot for another week. Hopefully this one will be a short week and we can be home Wed or Thur. Things are kind of loaded funny as we have all the "regular" camping stuff in the van instead of the trailer and all the office/hospital stuff in the trailer. We are kind of thinking that once we get situated daddy will take a trip home to make sure every thing is okay at home and unload the camping stuff. During that time the girls can "rest" in the trailer at the hospital. How attitudes are running still will remain to be seen.

Rebekah has very much enjoyed bike rides and playing with other children. This was a wonderful break and we are very thankful to all of the NAFA folks for the invitation. As always, it is a great group.


Saturday, July 16, 2005

Saturday Afternoon at Camp

Well we made it and the night went pretty well. There are 40-60 families here with many children Rebekah's age.

She is having a really awesome time playing games and running with other kids. She was able to play the bean bag toss; a variation of musical chairs where the kids walked around a big circle with colored circles on ground to stand on and the color you were on when the music stopped corresponded to getting a prize; running under a parachute, etc. She received a bunch of prizes including a squirt gun and bubbles! A lot of the time she is enjoying riding around in her bicycle trailer while daddy gets tired out pulling her.

This evening we will be making home-made donuts and all the kids get to eat them warm, topping them however the desire with sprinkles and frosting. That is usually a big hit.

It has been a nice break from being locked up at home or in the hospital. Daddy, however, has had a hard time that was unexpected. I have been reduced to tears several times watching her have so much fun but being so afraid that she may never be able to do this again and may not even be here next year. It is hard...


Thursday, July 14, 2005

A Smattering of Things

Thought I would just do a quick recap on the week and a few things that have happened or been on my mind.

Other than behavioral issues which this week have been about as bad as we have seen, Rebekah is actually doing quite well. I am sure that all of this is grinding on her too and she just doesn't have a great way to express that. She has started throwing things and hitting - both in anger and therefore both unacceptable. She knows she is not doing the right thing, however, and almost instantly heads to her sit down spot when she does something wrong.

Tuesday I took a small side job driving a dump trailer full of dirt all day. Loading up at one site and dumping at another. Made about 19 round trips over the same 5 mile stretch of road. Interesting side job for an adoption attorney but something that took physical not mental ability and made some decent side money - I needed both!

The inspectors (electrical and framing) came yesterday and both gave us passing marks on the remodel. We are ready to insulate and put in the final electrical plugs - hmm, maybe cousin Jimmy could come back for a weekend... The inspections were really getting to me and I have put them off and put them off some more. So many wonderful people have helped build the remodel that I didn't have a good handle on much of anything that was done and that made me scared when it came to explaining to them what was done. It all worked out great though!

Today Bretthauer Fuel and Road Sprays came and sprayed dust control on our gravel road. All 4 of the close neighbors (us plus 3) do this at least once a year. This year Bretthauer knew from one of the neighbors what was going on and not only gave us all a small discount for the road, but they also did our driveway for free - really cool!

Sometimes, like this week, when we are feeling emotionally pretty down and financially pretty broke it is the little acts of kindess (the windows, the freezer, the road, having someone offer to mow the grass, getting an email from paypal that somebody donated something at etc. ) that help keep us going. Somehow I want to come up with an better answer to "I don't know how you do it..." which we hear all the time from people. I don't know what that answer will ultimately be, but for now it is "we don't do it by ourselves but with the help of God and with lots of help from friends and strangers." We honestly could not do it without all of you. Please continue to let us know that you are out there.

At this point we are mostly packed into the trailer and ready to head out. Assuming our plans don't get changed again (which could always happen) we should get a couple of days of fun camping with a bunch of friends from Northwest Adoptive Families Association (NAFA) and then have to be at the hospital Sunday evening. Don't know if we will have internet access until Sunday so if you don't hear anything from us that is a good thing. But hopefully we will be able to put up a nice update or two.

Want to see something different? Let us know. Thanks.


Wednesday, July 13, 2005

Good Day, Not Feeling Great

It has been a good day. Grandma M came out last evening (and brought dinner), spent the night in her motorhome (in our driveway), hung out all day today and is camping in our driveway again tonight. Rebekah woke up and kept calling for Grandma. Finally, we let her walk out to Grandma's motorhome to get her attention. She walked out to the door and stood there saying "Knock Knock Knock". Daddy explained to her that she had to knock on the door with her hand, which she finally did. Grandma let her in and she hung out with Grandma for a little while (and got some more breakfast).

Rebekah has not seemed to feel great. She's been clumsy and gotten upset pretty easily today. She threw several temper tantrums and was throwing items at people. She spent quite a bit of time in timeout. Her attitude needs a little adjusting. Over the last few weeks, she has been getting quite upset over little stumbles. Mom's not quite sure why, but Mom tries to reassure Rebekah and help her to keep safe.

With Grandma M here, it gave Mom the opportunity to get out and run some errands.

Last week we found out about a family near our old church whose house had burned down and they had lost everything. They are going to be living in a trailer while they wait for their new home, but they are in need of everything. Mom had been planning on going through cupboards and getting rid of some things that weren't getting used (extra towels, dishes, etc...). She cleaned out some of the cupboards and took some of the items out to the church for the family. It reminds us of how blessed we are. In many ways, we have so much and, although it wasn't much, we were able to help this family out it a small way. God is Good and he cares for all of his children. We have been blessed by so many people and it feels good to help another family.

Yesterday morning we received a phone call from Steve who attends Our Place Church. He cleans windows for a living and had heard from Keith that we had some windows that needed cleaned. He would come out early evening to take a look and see if he could help. Mom had been worrying about the mold that had developed on the windows and between the two sets of windows and had told Keith about it. Mold can be really bad for immune compromised individuals, so it has weighed heavy on Mom. In particular, there were three sets of windows that needed cleaned (the others had already been cleaned). Steve came out and had time to clean them. It took him a couple of hours, and they look great. I know it would have taken me much longer (if I ever had time to get to that. A BIG thank you to Steve. It was awesome that he called and was able to get right to it. He told us that he has enough business right now that he generally turns down anyone with storm windows like ours, so it was especially nice that he was willing to help us out this way.

Mom had been stressed that there was too much clutter in the way of even getting to the windows. Luckily (can we say God), Mom was able to get much of the clutter cleaned up on Monday while Grandma A was helping watch both girls. This was without knowing that Steve would call.

With Rebekah's counts up, we are hoping to do some fun camping this weekend. One of the campouts we try to make each year is this weekend and there will be lots of kids around for Rebekah to play with. We are looking forward to it and hope that we can make it happen.

The Radiation Oncologist called today and left a message indicating that the doctors are still looking at Rebekah's tumor and that Radiation probably won't begin until a week from Monday. We knew that was a possibility. It won't change our hospital stay next week.

Carol came out for a while this evening to help Dad in his office. She was a GREAT help. Thanks Carol.

We feel very blessed to have many friends and family who care about us, help us in many ways and pray for us regularly. Thank you so much for your support. It is truly appreciated.


Tuesday, July 12, 2005

White Count and ANC are up! No Transfusion today

White Blood Count was 69.2 (x10'3) and normal is 4.5-17.0 (x10'3), ANC is 64.55 (x10'3) or 64,550 and normal is 1.5-11.0 (x10'3). The shots have been working and she doesn't need more for this round. Her Red Blood Count was a little low as well as her Hemoglobin, but not to where any treatment was needed. Red Blood Count was 3.23 (x10'6) and normal is 3.80-5.40 (x10'6) and Hemoglobin was 9.2 gm/dL whith a normal range of 11.0-14.0. We don't need to go back later this week for another check because her counts are up.

Another piece of news came out of today's visit. The Tumor board met today (as regularly scheduled) and discussed Rebekah now that they have all the scans back and they could look at everything. The Radiologist pointed out an area on the original Pet Scan on the Right side of Rebekah's face that was "bright" (everything else seems to be isolted on the left side of her face). This spot is near her sinus at the base of the skull (sorry I can't give any better description, but it is a little unclear to me the exact location). The Pet Scan shows areas of activity (rapidly dividing cells - typically cancer cells) as "bright". The oncologists were trying to find the same location on the MRIs, but aren't sure they've found the right spot. Now that they are looking at that area on the MRI they do see an area that looks abnormal, but it did not stand out before and it doesn't really look like the bulk of the tumor. The spot on the MRI really doesn't appear to have changed much. They are just not sure what it is/was. They want to see if they can get the images from the Pet Scan and MRI merged, so that they can identify the specific area that was "bright" on the MRI and decide what to do. Since the tests were done at two different hospitals, they are checking to see if the other hospital can "merge" them. If not, we may have to go to the other hospital and have them do an MRI.

It may change the field that needs to be affected by radiation, so they are trying to get this figured out quickly. It is possible that it was a sinus infection. It is hard to say. I asked if it was something that we could and should biopsy, but doc couldn't answer that one until knowing more about exactly where it is and then talking with an Ear/Nose/Throat surgeon to find out if it is even possible. We just have to wait and see. Uugh! Waiting is not always easy. If this is more cancer then it is great that it is caught now and can be treated (since if this type of cancer returns, it is usually fatal). Please pray that the appropriate treatment will be clear, so that there is no second guessing.

Now for the other piece of news... The calendar that I had been using has been thrown out the window. It was based upon needing Surgery AND Radiation. Since there is NO Surgery, the calendar is different. (I will say that the calendar was given to me very early in the treatment process when we EXPECTED to need Surgery and possibly Radiation.) We will be heading into the hospital Monday for our next round of Chemo (I was expecting a longer break) and Radiation won't be able to start until after we are done with that. Since this is a short hospital stay (3 days), Radiation won't be able to start until next Thursday (or later if they can't get it planned out by then). That pushes the end of Radiation out past when Grandmas will be back to school. At least the majority of the Radiation treatments will be during the summer when Grandmas are a little more available.

We are learning to roll with the punches and deal with each new piece of information as best as we can. We are learning more about cancer than we EVER wanted to (and more than we would wish on anyone). I pray that it makes us ALL stronger. I am very grateful that Rebekah has been a trooper through everything. Most of the time, she will try to make everyone else smile (and usually does a good job of it). She is a blessing from God!


Sunday, July 10, 2005

Doing Pretty Good

Here it is the end of the weekend. All in all, it has been a pretty good weekend. Rebekah has continued to be generally energetic and playful and have a decent appetite. She can be very finicky about what she will eat, but then it is hard to tell how much of that is 3 year old normal and how much of it is chemotherapy affecting her appetite. Goldfish, Cinnamon Life cereal, Apple Jacks cereal and hot dogs have been the standards for the last week or so. Go figure!

We are a little concerned about a rash or open sore that she has near her central line dressing. I'm not sure if it is from the last dressing, or if it is completely new. We'll have the doctor look at it on Tuesday when we're in. Please pray that it goes away. Last week, when we were in to see the doctor he warned us that she may need a transfusion this week. Please pray that she doesn't need it. She seems to be acting ok to me, so I'm not convinced that her counts will be so low as to need it. I know it can be hard to tell from looking at her (otherwise we wouldn't need to do the blood counts).

We had a number of visitors this weekend - Grandma M, Grandpa and Grandma C, Steve and Pat. It was good to see them all.

A big thank you to Keith from Our Place Church who was able to find a member that had a freezer that was no longer needed and donated it to us. Even bigger thanks to the donor! There have been a number of people who have wanted to help with meals, but we haven't had the room to store them. With the addition of the freezer, it will make that much easier. And it has come just in time for the very busy 6 weeks of Radiation which will probably start on the 18th (or at least some time that week).

As for Radiation, it looks like we will need to be at the hospital each day somewhere between 6:30am and 6:45am to start the treatment. The only way to guarantee that we will have the anesthesiologist available is to schedule it that early in the morning, before the "normal" day begins. It is hard to tell for sure how long everything will take each day, so we'll have to see how it goes. The good news with the early time, is that we won't have to deal with much traffic. We're trying to figure out how to make everything work well for us.

As if we didn't have enough things to worry about, late last week the check engine light came on in the van. We've got an appointment to have that worked on Monday morning. Hopefully, it is something easy to fix and be covered under warranty. Uugh! We rely so much on the van to get us to and from all of the appointments. Prayers here would be appreciated, too. I know it probably seems trivial, but it is one more thing to worry about.


Friday, July 08, 2005

As Rebekah Would Say - "ALLLLL DONE"

We made it through the day. They came and got us fairly quickly after the MRI (a welcome relief from "misplacing" her last time) and the anesthesiologist was not too concerned about her waking up fully before we could leave. It is kind of interesting trying to put a drunken rag doll into a car seat.

The following was taken just as she was going into the CT scan after her face mask was made. This is what she will be in daily for 6 weeks.


Now 2/3 of the way...

Rebekah is out of CT and down with her MRI started. She was looking as good as can be expected for a 3 year old sleeping... While she is still under we asked for IV Therapy to come change her dressings and hubs so she won't have to go through that trauma tomorrow.

Yesterday was really scarry for some reason - today is going pretty good.


1/3 of the way through Friday

Just a quick update. We arrived at the Radiation Oncologist about an hour early at 8:30am this morning. You just don't know how traffic will be.

At about 9:30-10 Rebekah started her general anesthetic to have her radiation treatment mask made. It is a plastic formed face mask similar to what kids might make with plaster of paris. It is "mesh" in that it has grids cut out of it for breathing, etc. I got a quick picture as we transfered her to the CT Scan just a few minutes ago but can't get it transfered to the computer until tonight.

About 11:15 we carried her from one building to another. They had discontinued the anesthetic and she was about 10% awake. We moved over to the next building and laid her down on the CT Scan table and were able to be there while the connected the anesthetic again and "Sealed" her in with the mask.

In about 20-30 minutes we will do the transfer thing again and move her downstairs to the MRI and start that all over again. Once she comes out of that she will be done for the day and mommy and Rebekah will head towards home and daddy will go meet a client.

While we were waiting down in Radiation Oncology we met up with a client of daddys from several years ago who also has a brain tumor and was not expected to live past 3 months - and that was 1 1/2 years ago. Way to go Maurice!!!!!

Sorry this is so short but please continue to keep us bathed in prayers. This is turning into 3 anesthetics in one day. We have learned a bit more about Rebekah and her tolerance of the drugs however - more on that this evening.


Thursday, July 07, 2005

Thursday afternoon - waiting for Rebekah to get out of Recovery

Rebekah has been "under" for several hours now for her PET scan and we have been just waiting. It is really hard. They informed us about 20 minutes ago that she came through it just fine or actually that she did "real well". Hmm, all she had to do was lay there?!?!?!

We are now in her room waiting for her. Not being able to be with her is very difficult. We generally have been allowed at least one of us in recovery so that she can wake up from the anesthetic in our arms but not here at this hospital(not our main one). We are sitting in her room which is very empty without a bed in it. Actually it is quite eerie.

More later.


Wednesday, July 06, 2005

Hanging in there, Counting our blessings

With this being a short week, we went in to the doctor for blood counts today. Rebekah's counts are still doing ok. Her ANC is still within the normal range at 2730, but on it's way down. Doc said we should expect a blood transfusion next appointment, which we have scheduled for next Tuesday. We could use some prayers that she does ok and doesn't need the transfusion. Her appetite has not dropped off like it has in the past. That is a blessing! Let's pray that it doesn't. Grandma M helped us get out the door this morning and Grandma A watched Sarah at her house while Rebekah and Mommy went to the doctor and then she brought Sarah home and helped watch both girls. Grandma M brought out dinner and is hanging out with us tonight, again. Thanks to both Grandmas! It is great that they are both on summer break.

Tomorrow she goes in for the Pet Scan. We were originally told that she couldn't have any food after 4am and no drinks after 9am with a check in time at the hospital of noon. That was looking really bad. Three year olds don't understand why they can't eat. When the anesthesiologist called this afternoon, he said she could have a light breakfast as long as she was done by 8am. That sounds a whole lot better. We'll need to wake her up a little early, but she'll be a much happier camper with some breakfast and a little less sleep than she would with more sleep and no breakfast.

Friday morning we have an appointment with the Radiation Oncologist to have the mask created (that will be used to keep her in the same position during each radiation treatment) and to do a cat scan with her in the mask. This cat scan will be used to design her radiation treatment. Radiation is aimed directly at the area to be treated. The mask is used to keep her in the same position, so that the right area is radiated. I am hoping that we will find out when we can expect to begin radiation treatments. I don't expect it to be next week, but it could be any time after that. I don't like not knowing. I find it frustrating to have no control of our schedule. I realize that for nearly a year, I won't have control of the schedule, but it doesn't make it that much easier.

It really seems as though Radiation is our only choice. We need prayer that Rebekah will make it through Radiation without the nasty side effects that have been described. I believe that God can keep her from these side effects. I have to trust that He can keep her safe through the treatments and give us peace and comfort through the process. He has already done so, in many ways. While the Radiation treatments (as well as the chemotherapy treatments to a lesser extent) will probably keep us from getting out and camping (in the woods not in the hospital parking lot), the fact that we will go through Radiation during the summer means that we have Grandmas that are more available to help. That is a blessing, too!


Monday, July 04, 2005

Happy 4th of July

All in all, it has been a good weekend. Rebekah has not been eating real well, but she is eating some and continues to ask to eat periodically. We continue to struggle with what she wants to eat.

We had a birthday party for Mommy on Sunday and had all the Aunts and Uncles and cousins as well as Grandpa, Grandma C, Grandma A, Frances' cousin Karen and Frances' aunt Arlene. Unfortunately, Grandma M was fighting a nasty migraine headache and couldn't come. It was especially unfortunate, because we were going to celebrate her birthday, too. Grandma M is feeling better today, but not completely over the migraine. She came over to hang out with us for much of the week. The party was much fun and the kids had fun playing on the play structure and running around in the yard. Thanks to everyone who brought food and drinks and came to enjoy the day with us.

Cousin Karen was planning on going home tomorrow, but when she talked with her husband yesterday he told her that the flights were over booked on Tuesday and it wasn't looking good for her to be able to make the trip standby. She considered whether to fly today or Wednesday and decided to fly today. She had to get up very early in order to make a 6:10 am flight. She called us this afternoon to tell us she had made it home safely. We really appreciated having her here for nearly a week. She was a lot of help and it was great to see her. It was important to Karen to come and help. Despite how far away she lives, she knew that she could take some time to come and help out. She is an example of God's love in action.

We went out to a late lunch with Grandma M and friends Steve and Pat. It was great to get out and to not have to cook.

Hope you all have had a great July 4th!


Saturday, July 02, 2005

We are home

About 3 this afternoon we were able to leave the hospital and head for home. Oh is it good to be home! At 3:30 this morning, I wasn't sure if we were going to be able to leave on time, because of the bad reaction to the medications. But, they were described as common problems with the meds and not a reason for further watching. She has never had that type of reaction to Benadryl before, but this was the first time she had the IV version of it. I'm not sure that we'll be giving her the oral version any time soon.

Mom was able to get Rebekah calmed down fairly quickly this morning. Between the drugs wearing off and Mommy's love and hugs, she settled in, fell asleep in mom's arms and slept until well after 10. We decided to let her sleep as much as possible.

Both girls fell asleep in the van on the way home. We weren't more than about 5 minutes away from the hospital and they were both out and slept the entire way home. So they both got a decent nap. Once home, Rebekah was glad to be free and show Karen her room and wanted to (and was asking to) eat. Sarah was glad to be free on the floor - a luxury she doesn't have at the hospital.

Grandma M stopped by the hospital for a little while this morning and brought some fresh blueberries and raspberries. Rebekah ate quite a few of the blueberries for breakfast and didn't hardly touch her meal tray. Today is Grandma's birthday, so we were able to wish her a happy birthday in person.

We hope you all enjoy the Fourth of July holiday and have a great weekend. We will enjoy the time at home.


A Bad Night

We have had a pretty bad night but things sound like they are getting a bit better.

Grandma C was staying in the room with Rebekah last night so we could stay together out in the trailer. When we saw them last about 9pm they were playing in the playroom and having a good time. About 11:30pm we got a phone call from the nurse saying that they had given Rebekah some Benadryl for a rash that was appearing on her face and tummy and she seemed to be reacting badly to it. They then gave her some other drugs (Adavan) to try and counteract the Benadryl's effects. The nurse told me things were going much better now and not to worry.

About 3:30am Grandma C called with Rebekah screaming in the background(which I unfortunately answered on speaker phone so now Sarah started screaming here - ugh!). Grandma C said Rebekah was not doing well and neither was Grandma C. Mommy packed up quickly and headed across the parking lot to the room. Sarah and daddy stayed in the trailer and spent a lot of time trying to get Sarah down.

Apparently hallucinations are one of the side effects of the Bendadryl and Rebekah's was exhibiting a lot of symptoms that lead us to believe she was extremely scared of "the bugs crawling around" that of course were not there. Once the Benadryl started to wear off Frances said things started to calm down.

Hopefully we will still get to go home today. Thank yous to Grandma C for trying to spend the night with Rebekah and sorries that it did not work out better.


Friday, July 01, 2005

Life Turned Upside Down - All Over Again

WOW what a morning. We are again in shock and fear about the future.

We spent all morning in meetings with doctors and their staff. We have finally (for the first time ever) seen the scans of Rebekah's face and tumor including the before and the after. We have a view of what the doctor's see as the long term prognosis including permanent issues.

When we are feeling better we will put out all the gory details but what we know right now is:

Notwithstanding the nearly complete lack of tumor in the recent scans without further treatment (radiation), the doctor's give her a 100% chance of re-growth of the cancer and a 0% chance of survival. With treatment including radiation she has, at best, a 50% chance of survival. Treatment will include permanent side effects such as stunted facial bone growth resulting in deformity, hearing and vision damage and potentially additional mental and nerological issues. The fact that the tumor appears to be "gone" at this point is significant in showing how it will likely respond to future treatment and that is included in increasing her odds of survival to as high as they are.

Details are scarce right now but radiation will include 3-5 hours a day for 31 days worth of treatment (M-F) or a total of 6 weeks. Chemotherapy will continue but be modified during that time.

This is not what we hoped for or dreamed of earlier this week in experiencing God's miracles of the tumor disappearing. Even if at least for a little bit, we were hoping that "gone" meant we could put an end to all of this. There has been a great lack of communication between the doctors and us that was also fueled by what appears to be professional differences between our previous doctor who has now left the practice and those who are remaining in how and what to reveal to parents/patients.

We are trying to remember, however, that the above scenarios are being painted by the same doctors who did not give the tumor any chance of being "gone".

Thank you to Keith and Steve for your visits during the last couple of days. They have been very uplifting.