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.

Monday, May 30, 2005

New Central Line Surgery Scheduled

Rebekah's new Central Line is scheduled to be inserted on Monday the 6th as we go in for the next round of Chemotherapy. That makes it easier on us, since it won't be an extra hospital visit. We will need to be there early for the surgery. Rebekah will need another general anesthetic for the surgery, which doesn't excite us. We'll need to figure out how to best protect the new central line so that it doesn't get pulled out again. We still have no idea how she did it in the first place. So frustrating!


Memorial Day Weekend - Lots of Fun

Sorry for no weekend updates until now. We’ve been very busy – but a good busy. Normally for Memorial Day weekend, we spend it camping with Frances’ Mom and relatives. This year we decided to have the campout at our house and spend Saturday getting some things done around the house (as a work day) and the rest of the time as “fun” time. We had a big crowd – between 15 and 20 most of the weekend. I’m not even going to try to mention everyone. It was a lot of fun and much work was accomplished. Thanks to everyone who helped. Help comes in many ways and it was ALL greatly appreciated.

We were able to get the Play Structure completed and the area finished with Railroad ties and playground chips. A big THANK YOU to Best Buy in Town Landscape Supply who donated the playground chips and Steve Johnson who worked with Best Buy to get them donated and hauled them for us. Not only that, but Steve also came out and smoked ribs for the crowd on Saturday (as well as helping move playground chips with his newly acquired bobcat). All of the kids, including Rebekah, had lots of fun on the play structure.

Frances’ cousin Jimmie spent two days taking care of the electrical work for the new play room. That was unexpected, but absolutely fabulous. THANK YOU Jimmie and Shellie (his wife) for all of that! Jimmie, Shellie and their kids (ages 1 and 2) came over from Prineville with Shellie very pregnant with number 3. The doorway from the existing living room to the new room was opened up on Friday while the girls were at the hospital. Rebekah seems to be getting excited about her play room. Although, she seems to think that she gets to sleep in it.

Since Rebekah’s counts were up, she was able to spend time around everyone and have some good fun outside. We didn’t have to be too concerned about germs and keeping her in. She had great fun playing with her second cousins and her cousin Cole. The kids got to go on tractor rides, motorcycle rides, and rides in the wagon behind the tractor. All the kids (and adults for that matter) seemed to have a great time.

Some of the crowd decided to go to the beach on Sunday, while some of us hung out around the house and played and did some work. It was fun to watch the four girls (ours and Jimmie’s) play together. They seemed to have a great time.


Friday, May 27, 2005

Counts are Up - Praise God!

Rebekah's counts are up today so no transfusion was necessary. Thanks for all the prayers. God can do miracles! Our friend Pat had gone with us girls, so that we would have a second set of adult hands if we needed the transfusion. Since we didn't, we had to find a few things to do to "waste" time at the hospital before she could meet up with her husband after he got off work. We took our time with lunch and then looked for a grocery store so that we could pick up a few things. Now I know where one is that is reasonably close to the hospital (and I could find it again).

Her Hemoglobin which was "Critical" Tuesday is now "Low" at 8.6. Her ANC is 5380 - well into the normal range. Below 1500 is where we need to be careful.

She will get one shot tonight for "good measure" and then no more shots this time around, so she won't get 3 of the 10.

Have a great weekend!


Thursday, May 26, 2005

Not Much to Report

Another day is nearly done. There is not much to tell. For 10 days after Rebekah receives Chemo, she gets a shot that helps increase her blood counts. She has been objecting to them the last few days. She tries to run away from them. It is sad to see her reaction, but we know she needs them. Tonight, Rebekah was fighting it and Sarah was upset along with Rebekah and crawled over to where she was. There is the love between them shining through.

The girls are finally asleep. Rebekah normally goes to bed about 8pm, but Sarah will usually be up until somewhere between 10 and midnight. Today Sarah went down a little before 10. Hopefully, she'll sleep through the night. Mom isn't getting a lot of sleep. Sarah hasn't been doing a good job of sleeping through the night. She wakes up and starts screaming and hasn't yet learned how to put herself back to sleep. Occasionally, she'll take her binky back and settle down. More often, however, she won't settle in quickly. Do we let her scream and possibly wake Rebekah or pick her up and rock her (or nurse her) back to sleep which doesn't help her learn to put herself to sleep? It is truly a dilemma. Uugh! It is especially a problem when Mom, Rebekah and Sarah are all in the hospital room together for the night. Unfortunately there isn't a perfect solution.


Appetite is down, otherwise ok

Rebekah's appetite is down, which is not uncommon. The chemo can do that. It can also change taste buds, so we're trying to find what tastes good to Miss Rebekah. For a snack she said she wanted yogurt and then wouldn't touch it and then said she wanted a banana and wouldn't touch that either. Finally she ate some dried apricots and gold fish. It is challenging and frustrating to try to get her to eat and it takes a lot of patience.

Sarah will often sit in her high chair with us while we eat. When she is eating finger foods and runs out, Rebekah will make sure that mommy knows and gets her more. She is so caring. The girls seem to have a very close bond, more so now that Rebekah has been diagnosed with cancer. They really don't like it when the other is upset. Rebekah can go from screaming and very upset to smiling and giggling, just by having Sarah's attention.

Otherwise, Rebekah has been doing pretty well. Aunt TT came out to drop off some prescriptions that she had picked up for us and brought the boys with her. Rebekah, Jacob and Michael sure had fun playing on the play structure! It will be even more fun when everything is "just right".

Please keep up the prayers for good blood counts tomorrow and no need for a transfusion.


Tuesday, May 24, 2005

Some Ups and Some Downs

Today included a trip to the Clinic for blood counts. Rebekah did well with her needle stick for the blood draw, although she cried for a bit. Grandma C (who was watching Sarah in the toy room at the time) said that Sarah sure knew that her sister was upset.

No transfusions were necessary for today, but doc said to expect one to be needed at our next check on Friday. Her ANC (which identifies the infection fighting white blood cells) was 1.54 (x10'3) - or 1540. The normal range is 1.5-11.0. This figure is the most critical for determining what Rebekah can or can't do. Anything above 1.0 means that she can have a "normal" life including school if we wanted. Below .5 means that we need to be cautious and keep her away from anyone who is sick. Below .2 means being very cautious. Her White Blood Count was 2.0 (x10'3) with normal being 4.5-17.0. Red Blood Count was 3.02 (x10'6) with normal being 3.8-5.4. Hemoglobin was 8.0 with normal being 11.0-14.0. This was flagged as "critical" and her doctor indicated that anything below 7.5 would mean a blood transfusion. This is what Rebekah's doctor is concerned about for Friday. Prayers for this count to not drop would be appreciated so that the transfusion will not be necessary. Her Platelet Count was 222 (x10'3) with a normal range of 140-440. Anything below 10 could require a Platelet transfusion, so we're looking good here.

We have learned that if a transfusion is necessary, which we can expect that they will be from time to time, it will be an all day adventure but not require a night stay. We pray that transfusions won't be necessary. We know that our God can do all things, including keeping Rebekah's counts up enough that transfusions aren't necessary (despite what the doctor's have led us to expect).

Rebekah is a great trooper through everything. She sleeps a little more than normal when we are home, but while we're in the hospital she sleeps a little less. Sarah is a great trooper, too. Both girls will smile at anyone they meet and cheer them up.

This morning Rebekah didn't keep her breakfast down, so we gave her some anti nausea and anti vomiting medicine. This was the first time we needed to give her anything for that. We can pray that it was a one time thing and she won't battle with nausea and vomiting any more. While she is receiving chemo in the hospital, they keep her on the anti nausea medication to prevent any issues.


Monday, May 23, 2005

An unremarkable day

Well, not much happened today. Amanda was with us much of the day Sunday (including our trip to the Emergency Room), spent the night and was here much of the day today. She was a great help!

We checked in with the doctor's office this morning and found out that we will plan on having Rebekah's Central Line replaced when she goes into the hospital for the next round of Chemo. We had figured that it would either be early this week or in preparation for the next round since her counts will be dropping this week and bottoming out towards the end of this week or first part of next week and any infection can be life-threatening when counts are low. It looks like they will have to draw blood with needle pricks for the next two weeks. I'm not looking forward to that, but that's where we are at.

It is not uncommon for children to pull out their central lines. We're not even sure how she did it. She was talking about her booboo needing a change (which seemed strange). I thought I would change her diaper and see if she had a rash or some other sort of booboo that needed attention. That's when I found the Central Line completely out. I panicked a bit, yelled for Scott, checked her incision site (to make sure I wasn't seeing any bleeding which I wasn't), had Scott put a call into the on-call doctor and changed her diaper to get ready to leave. We rushed around getting a few things packed (in case we needed a little time at the hospital) and were ready to go by the time the doctor called back.

Today was pretty uneventful. Both girls played well, napped well and had ate well. Tomorrow we go in for blood counts.

Keep the prayers coming. I know prayer is working. There could have been serious issues with her central line, but there weren't and I'm sure that is because of the blanketing of prayer.


Sunday, May 22, 2005

Sunday Evening - take two.

I just spent 15 minutes putting up a post about the last 3 hours and it seems to have gotten lost in posting. UGH!

The short story because we are off to bed:

Rebekah pulled out her Central line and we made an emergency trip to the hospital. X-rays were taken and yep, she pulled it clean out. There is no internal bleeding or parts of it left inside - which is good!

We don't know when we will have to put it back in. They may wait until her next Chemo appointment on June 6th or they may do it before. If they wait she will have to have 5-6 IV sticks and blood draws between now and then. I am sure a lot of it will depend on her immune system. No matter when it is, however, she will have to undergo another full anesthetic and surgery and we will have to pay out another 4,000-6,000 dollars (or at least the co-pay and 20% insurance portion thereof. Ugh.

But we are home now, we have all had some pain medicine and everything is feeling pretty blaw. Off to bed and maybe more details tomorrow.


Home at Last

Warning - rambling ahead:

It is Sunday morning now. We got home yesterday afternoon. As always, it takes a long time to get discharged from the hospital but definately worth it!

Grandma M came home with us and helped take care of the girls through the afternoon. Rebekah is always tired when we get home and acts up quite a bit because of that. She was pretty much doing okay until it came time to give her a shot. She is not fond of them!

In the evening Amanda came over and spent the night in the new bed in Rebekah's room. Rebekah slept pretty well through the night but Sarah was not so obliging.

Today we start the clean up and repacking of the trailer and all of our stuff so we are ready to go all over again. We emptied the septic tanks on the trailer and filled up with fresh water on the way home so that is all ready to go. Today Mike and Tara will come over and throw a good cleaning on the trailer. That is one less thing we have to do which is awesome!

When we got home we had new windows in the remodel. Really cool and exciting. Now we cannot wait for that to get finished and have another play area and maybe, just maybe get some of our piles of boxes and toys organized again.

It's hard to believe that we are nearly 6 weeks into this. It is delightful that Rebekah is doing so well. Please keep up the prayers.


Friday, May 20, 2005

Friday Evening - the end? of a long week

Another long day and this has been the end of a long week. It is looking like we will be going home tomorrow but we cant be sure until we are on the road home.

Rebekah is doing really well. She continues to be very happy when she can be out and running around or someone is taking her out for a wagon ride. She has not been getting sick at all (maybe because she gets drugs every 4 hours to stop the nausea?) and she generally is not showing any signs of this wearing on her any worse than generally being cooped up in one place all day every day. The blood that showed up a little bit earlier this week seems to have stopped. She is now done with her 5 days of chemo and on the last 24 hours of straight saline type fluids just to make sure she stays hydrated and the chemicals can move throughout her body and not get concentrated in any one place. The rash she started to show last night appears to be a yeast type infection and is responding well to the topical ointment being used.

That is about it for the Rebekah update - the rest is kind of a mommy and daddy update.

Mommy and daddy are run down. Mommy has had two pretty solid days in the room with just a few breaks (thank you to those who have come down). Mommy is standing up under it pretty well but is tired. Because Grandma M is spending the night with Rebekah tonight mommy, daddy and Sarah are all out in the trailer together tonight. It is 10pm and Sarah has been asleep for about an hour - that does not give us great hopes for the rest of the night...

I don't know why but this has been a really tough day for daddy. Mommy did most of the care today and I stayed in the trailer getting some work done but did come take care of Rebekah during lunch while Grandma M and mommy got to go down to the cafeteria for lunch. Rebekah just laid in my lap and arms and we rocked on the rocking chair for almost an hour. I just sat there and cried. And then this evening I was there for about 4 hours and had tears in my eyes just about the whole time. Again, Rebekah seems to be doing fine and I am not sure exactly why I am being so affected right now.

As said, tomorrow we go home. We do have someone who is coming later in the evening to spend the night (THANKS AMANDA) but if anyone wants to come help us out in the afternoon and/or early evening it would be really helpful. Just getting home and getting everything in is tough and, as experience tells us, that is when we kind of "hit the wall".

At this point we are hoping on a good weekend at home and then hoping to make it through the week with Rebekah's counts going down. Last time was tough and they said it will get progressively tougher as her immune system has to go through this another time, and another, and another.

Pray for counts, spirits and energy to all stay high.


Thursday, May 19, 2005

Thursday - another long day

Mom is typing here, so this will be a little longer of a post. We thought it best to warn everyone up front.

It has been a long day, but then they are all seeming to be long these days. Rebekah seemed to do pretty well. She had bouts of energy and bouts of cranky (mostly due to over tired). When she was cranky, mom was able to get her to rest (or sleep) and afterward she was in a much better mood. A visitor would come and she would perk right up. Both girls seem to light up the room whenever a new visitor comes in. They will bring smiles to many faces during the day.

Yesterday, we had visits from a Physical Therapist, Occupational Therapist and Speech Therapist, although the Speech Therapist didn't get a chance to work with Rebekah because she was sleeping at the time. They try to assist patients while in the hospital to encourage growth. Since Rebekah was receiving Physical Therapy and Speech Therapy before the onset of Cancer, I think it is great to get a little assistance while we're in the hospital. And it gives Rebekah a little break each day. Again today, each of the therapists showed up and both the Physical Therapist and Occupational Therapist played and worked with her. Unfortunately, the Speech Therapist came at bad times and it didn't work out. They try to come every day or two while we're in the hospital.

She has a little bit of a rash on her chest today that we're not sure of the cause. It could be an allergic reaction or it could be a yeast infection. Doc decided to treat it for a couple of days as if it is yeast and see if there is improvement. If not, then we'll treat is as if it is an allergic reaction. She had a similar rash a few days after her first round of chemo which eventually went away on its own. It is not overly concerning, but something we wanted looked at.

We had several visitors today. Grandma C stopped in briefly this morning and then came back to spend the night with Rebekah. Grandpa showed up for a little while this evening, too. Grandma A came for a little while this afternoon and early evening. Friends Mel and Linda brought mom lunch and spent some time with the girls and took Sarah for a walk. Rebekah slept much of the time they were visiting. Friends Mike and Tara and their kids stopped in to help. Since Rebekah was sleeping, they took Sarah for a walk and tried to put her to sleep, but she wouldn't cooperate. Their daughter Emma had seen the "yellow brick road" in the children's garden at the hospital, so she came dressed as Dorothy complete with red shoes and Toto. She looked adorable.

Rebekah has been doing a good job of sleeping through the vitals checks, diaper changes and medication administration during the night (at least during this stay). Praise God for that! When mom has spent the night in the room with both girls, there hasn't been as much trouble with one girl waking the other up. This makes the nights much easier (which makes the days easier, too).

There is probably more to tell, but I can't think of it now.


Wednesday, May 18, 2005


No special titles today and nothing really eventful. Rebekah is doing quite well on her 3rd day of Chemo this week and doesnt appear to be getting sick or anything like that. There was a little bit of blood in her urine where the chemicals are irritating her insides but this is to be expected and is being watched closely.

Today daddy was out of the hospital a lot on business and that left mommy to deal with the girls by herself. Luckily there were several therapists (speech and physical) that came to do some things with Rebekah and that helped. Tomorrow daddy is out all day at a seminar so keep mommy and the girls lifted up!

Grandma C. stopped in a couple of times on her breaks at the hospital and Rebekah was delighted to see her. This evening Cousins Ann, Joe and JJ came by and that was really nice. They brought LOTS of food and helped to pull Rebekah around on the wagon.

Basically Rebekah is really REALLY fussy when she has to be confined to her room and absolutely happy and delightful when she can be out walking the halls or being pulled around in the wagon. One of the nurses said to us today that it is the parents that get all the exercise!

Some friends of ours were also in the hospital today with their little boy having some tests done. Prayers for little Benny please.


Tuesday, May 17, 2005

Mom's Perspective for Tuesday

It has been a full day in the hospital. This time, it is a different set of chemicals that are administered, so we're trying to figure out how what to expect. This set does not have the same risk of mouth sores as the last one, and thankfully the sores only lasted for a few days. Also, with this set, the nursed are not having to check in on Rebekah every hour (like they did last time), so sleep might come a little easier.

Rebekah has done well today. She had lots of visitors and took a good nap. I think she was pretty tired after getting up early yesterday, no nap and going to bed late (not to mention the hour that she was awake during the night).

Lolly and her son Gunnar came and took Rebekah for a wagon ride and over to the Play room where they helped her with creating a painting (one of the Child Life activities for the day). Robin brought Mom and Dad lunch and shared her egg salad sandwich with Rebekah which Rebekah loved. Grandpa stopped by and loved on the girls. Mom was able to get a nap, thanks to Brad and Dinah who were able to get Sarah to sleep while Rebekah took her nap and hung out with all of us dozing. Not the most exciting company for them, but the rest was great! Today was a good day of rest for Mom. Thanks to everyone who helped with that! Tonight, Uncle Chuck is staying with Rebekah so Mom and Dad can get a little better sleep. Hopefully Uncle Chuck will get decent sleep (although often interrupted), too.

Rebekah's face seems to be improving. She is opening her mouth much more than I've seen for a long time. Praise God! Her appetite was decent today, although she was picky about what she wanted to eat. She didn't seem to want to drink much, but she is getting IV fluids, so that is to be expected.

As always, your prayers are appreciated. They are working. We feel blessed to have so many people caring and praying for our family.


Monday, May 16, 2005

Monday Mid-Day

We are now all checked into the hospital and Rebekah is not at all happy about being here.

We started the morning early, about 8:30 out the door. She had her first appointment and blood tests at 10:30 and did not get cheked into the room until almost 2:00pm. There were some questions about her counts. Her immune level (ANC) was supposed to be at 750 to start chemo and it was at 700. After a phone call to the study supervisor back east it was clarified that we could start chemo anyway. Now we are dealing with the 6 hours of IV fluids that have to start before the 5 days of chemo.

We would like to ask for very specific prayer that the chemo attacks the tumor exactly as it is supposed to and shrinks the tumor to where it can be removed in the future without radiation. Based upon the expansive growth of the tumor prior to any treatment this is "unlikely" says the doctors, and would be quite miraculous - but our God CAN do it!

Thank you all for the continued comments, donations and bracelet orders. Every bit helps!


Saturday, May 14, 2005

Saturday - and what a day.

Rebekah is again feeling really good though a bit grumpier today than yesterday. Maybe it had something to do with watching a BUNCH of people out in her front yard build her playset.

Major thanks need to go Russ and Tracey Waldron, Aunt Tiffany Schwander and the Our Place Church crew who came and built, and built and built some more. More pictures are up in the photo gallery. Please check them out and, if you know anyone in them, give them a special word of thanks.

Tomorrow is one more normal day and then we start the longest hospital stay so far. We have 2 people spending the night with Rebekah during the week and could really use some people any or every day, even if for a few hours, to come play with Rebekah and take her for walks or pull her in the wagon. If you are, or know someone willing to do so please give us a call at 503-324-0111 or give Robyn a call at 503-357-5181.

Thank you and we hope God blesses you as much as He is us throughout this whole process.


Friday, May 13, 2005

Friday - A Day To Rejoice

Rebekah is spectacular today! She is energetic, happy, not complaining about anything (except doing what mom and dad ask her to do), etc. Daddy and Rebekah got to go out and do some errands this afternoon and Rebekah got to drive the truck around the field for a while. Oh to have every day be like today for her.

But that is not the only reason to rejoice. I just have to share some of the things that have all happened today - the combination of which has reduced me to tears as I write this. They may be mostly material things, but we have those needs as well.

Let me first start by telling you that Cousin Jodi, without any prompting just sent me this verse: Phillipians 4:19...."And my God will meet all your needs according to his glorious riches in Christ Jesus." Well, let's see how true that has been JUST TODAY:

-Rebekah is doing so great.
-Our friend Mindy who has been SO helpful had enough of a break in her busy schedule to be able to stop by and have coffee this morning.
-The windows necessary to complete the next step of the remodel arrived (and Don Burnett who is helping us put it all together is available tomorrow to work on them).
-Rebekah and I were able to go to Lowe's and purchase the door and heater for the remodel with a gift card graciously given to us.
-The Our Place Church crew that is comming tomorrow to build Rebekah's play structure blossomed from 3-5 people to 14.
-The only time in the next week that there will not be heavy rains is the time scheduled to build the play structure.
-Two new unexpected clients called today.
-U.S. Bank in Ohio went from not being able to find Rebekah's Trust account yesterday (preventing anybody from making any deposits) to all of a sudden having it be totally available.

And the last thing that just rendered us speechless a few minutes ago: A friend was shopping at Mattress World and happened to mention what they had seen on the BLOG a few days ago - that we need a bed in good condition. The man they were talking to was a cancer survivor himself and without any hesitation at all declared that Mattress World will be meeting that need with a brand new mattress and box springs.

Folks, God is good. We thank each and every one of you SO much for what you have done for us and we thank God for making it all possible. Please continue to pray that the miracles continue not only because of, but directly on Rebekah.


Thursday, May 12, 2005


WOW - what a response on comments, thank you! We guess you are really out there.

Rebekah slept a little late today (she is sleeping more and more) and then woke up quite hungry. She ate lots of oatmeal and then spent the morning playing with her sister. We haven't seen her any happier or more playful in a long time.

In fact she was doing so well that mommy decided to take her and Sarah out to run some errands today. We will see how they are doing when they get back.

Again, thank you for your support and comments - we were very uplifted today!


Wednesday, May 11, 2005

An ongoing update

I don't know how much to post and how much not to post when things are not drastically changing?

As you probably know we came how from the hospital Monday after a fear of a fever kept us in the hospital for 3 days. Tuesday (yesterday) Rebekah had pretty bad diarrhea which turned into a bad, bleeding, diaper rash. Frances called all over town and found one tub of a certain diaper rash ointment the doctors were recommending ($5.00 for a very small tub!) It seems to be helping and her diarrhea has gone away. That is one of the things we need to be very careful of and we almost thought it would end us up back in the hospital.

Today, Wednesday, things have been going quite well. Rebekah has been generally content and is loving playing with her sister. I walked in on them earlier and Rebekah had pulled Sarah (literally dragged Sarah) onto her lap and was trying to read a book to her. It was SO cute but unfortunately the camera was out in the van. This evening Rebekah spent a good 5 minutes on the phone with Grandma Mickley. All Rebekah would say was "yah" and "chi chi" and "eat" but they seemed to be having a good conversation anyway. Rebekah was really sad to let the phone go.

As long as nothing else changes we are still planning a trip to the hospital next Monday for 6-7 days or so. It will be long, but what can you do.

A few days without comments and we are wondering if anyone is really out there? Let us know what you would like to hear, see, etc. and keep checking out as Steve just about has it finished off now.

Your prayers are needed every day, please keep them coming.


Tuesday, May 10, 2005


Many of you have been wondering how you can help with time, efforts, stuff, finances, etc. We now have a place where we can put up ongoing answers to those questions. Thanks to Steve and Pat Johnson we now "own" will be a parallel site to this one answering the question "How Can I Help" and to see some basic information on Rebekah and her cancer as well as an ongoing photo journal of how she is doing. Check it out by clicking on one of the "How Can I Help" links to the left.

THIS Blog will still be the place to come for frequent updates on her condition.


We are back home again...

We were able to come home Monday afternoon. Rebekah is doing fine (actually great!) The doctors though she was doing so well in the hospital that, baring any changes, they cancelled our mid week appointment this week and told us to come in as scheduled for the next chemotherapy on Monday, May 16th.

Rebekah is currently playing with a friend from our old church who came to the hospital to help yesterday, spent the night last night, and is here throughout today. Words cannot express how helpful that has been - THANKS AMANDA!


Sunday, May 08, 2005

The Weekend Wrap Up

As you might have read a few posts ago, we had to take off to the hospital unexpectedly Saturday afternoon. Rebekah woke up from a nap with a high (102+?) fever. Anything over 100.5 is really dangerous to someone in her condition.

When we called the doctor he told us we had to go and that we should plan to be there 48 hours +. We were not quite ready to go "on a moments notice" (something that won't happen again) and about 45 minutes later we were out the door with the trailer in tow and everything 4 of us need for a week (including my office) along for the ride.

We got to the hospital about 5pm and they started taking blood for tests. Fever is so critical that they actually start heavy doses of anti-biotics before they do a full patient work up and she had them in her within 30 minutes of hitting the front door.

The first blood tests came back and the results were "unacceptable" so they did them again late Saturday night. Again the results were "unacceptable" so they did them again Sunday morning. On ALL THREE tests Rebekah's white counts and her immune fighting ANC rating were above the levels for a normal healthy NON CHEMO patient. In fact they even stopped us from giving her the white count boosting drugs this morning. I will leave it up to each reader to determine whether they believe that the drugs we were giving her "all of a sudden" did 200% of what they are supposed to do over time or whether God answered the prayers of so many of you that were praying specifically for this result. It is pretty clear to us that the later is more likely.

As shown in the picture below, Grandma C and Grandpa came out today this afternoon to help with Rebekah. Grandma C stayed with her while Grandpa and mommy, daddy and Sarah went out to eat lunch (thanks Grandpa). Then Grandpa pulled her around/walked with her for several hours. After they left daddy did the same. Then this evening Aunt TT came and did more of that. Rebekah is SO happy when she is out walking or getting a ride in the wagon. If we are here and you want to do something to help for a few hours (she won't let you do it for less!) please please please (if you are not sick) call us and then stop by and learn every hallway of this hospital.

Rebekah was feeling so well and the blood test results were SO positive that they are talking about letting us go home earlier in the day tomorrow, Monday. Normally we need at least 48 hours of blood cultures to make sure that some infection isn't growing. In fact there was some discussion today that we might even have gotten to go home today at 24 hours - but the oncology doctor put a stop to that discussion pretty quick just to be safe.

Late this morning was the haircut shown below. I won't go into it much except to say that it was quite tramatic for daddy - and just difficult for Rebekah. We did video record the whole thing and there will be video clips us somewhere soon.

This hurry up go and hospital living is difficult on us. Daddy is tired and mommy is exhausted. It was a very tough Mother's Day for mommy. We are very thankful for those of you that, whether we are here or at home, are available to help with watching the girls so that we can get a break. Please keep those offers coming as we are only a few steps into this long journey.

And most of all, please keep praying for miracles. We have seen several all ready and, as stated above, we truly believe God does answer those prayers.


Now its REALLY ALL Gone...

We have spent most of the weekend at the hospital, quite unexpectedly. While here Rebekah's hair started falling out in earnest. This morning (Sunday) nearly 1/3 of it was out in the bed and was getting all over everything. Rebekah could not even eat without it being all over her hands and food. Uncle Charlie brought us over some clippers so that we could 'resolve' the situation as best as possible:

This morning at breakfast:

This afternoon with Grandma C:

(Photos taken with my palm pilot - sorry for the lack of quality)


Saturday, May 07, 2005

Late Saturday Change

We are now in the hospital on IV antibiotics. Rebekah woke up from her nap with a 102 fever which, combined with her immune fighting level, is critically high. Not sure how long we will be here but it will be for a few days anyway.


A Picture Is Worth...

... a thousand strands of hair.

I couldn't get a good picture because she was moving around so much (which is good!) but there is HAIR EVERYWHERE.


A Great Evening and a Rough Morning

As you might expect, this whole situation is going to have its ups and its downs.

Last night we had an absolutely wonderful visit from the founders and many of the board members of Kory's Foundation (some who came a very long distance to meet us all) who where extremely gracious with some much needed support. Look for more about Kory's Foundation in the near future. We were so overwhelmed with gratitude that we didn't even know what to say to them.

Then this morning came along and the inevitable has started to happen and Rebekah has begun to loose her hair. As mommy said, it was very difficult to not be shocked while right in front of you Rebekah had a fist full of her hair in hand. We knew it was coming and we tried to plan for it - but how can you really plan for things like this?

Please keep the prayers and comments coming. The private emails are encouraging to us and the public comments on this site are encouraging to hundreds if not thousands of others. We love them all! Thank you.


Thursday, May 05, 2005

Thursday's Blood Counts

Rebekah is home from her trip the hospital for blood tests and counts.

White Blood Count (*Not Available) (Normal 4.5-17.0)
Red Blood Count 3.75 (Normal 3.8-5.4)
Platelet 191 (Normal 140-440)
(Her hemoglobin and hemocrit were also still low).

The percentage/ratio that is most important is called ANC and has some important ranges: Above 1000 is pretty good and safe for her to be out and about (or go to school). Below 500 means she needs to stay home and away from the public at large and anything that could get her in trouble sick/infection wise. Below 200 means everything possible must be done to keep her safe. Today Rebekah's number is 180.

They are not requing a transfusion at this point but every day that goes by means these counts are getting lower and lower. It is highly possible that she will have to stay for a transfusion at the next visit.

*We don't have a reason why the WBC was not available (as it has to be to determine the ANC) but it didnt come back on her blood report.

Rebekah is still fighting eating most of anything.


Wednesday, May 04, 2005

Wednesday Afternoon - some small developments

I have been reminded by a media person friend of our that people are relying on coming here and seeing something and that "no news" is not acceptable - a "good" reporter would "make" news if there isn't any...

Well, I was about to say that I would resort to creating news because things had been going along without any change. Rebekah had been eating and generally happy. Unfortunately that is starting to change as it appears that she is developing some sores in her mouth. This is expected and we have 'magic mouthwash' prescribed to help deal with it but the trick is how to get her to use it. Can someone please explain to me how to explain to a 3 y/o with learning disabilities exactly how to use mouthwash and then get her to do it?

Tomorrow is another blood test day so we are praying for that - along with the mouthsores. We will update you tomorrow sometime.

And finally, a note on comments. Many MANY M A N Y of you have been leaving some great comments and emailing us privately. We (and others) are very much encouraged by them and please keep them coming. We don't have time sometimes to respond to them all personally but they are very well received and are being kept for a book for Rebekah. I think it would be even more of an encouragement to put who you are, where you are and how you are related to or heard about Rebekah as the variety of sources of the comments and email is amazing. We don't even know who about 10% of the people are!


Monday, May 02, 2005

Blood Tests are Back...

...and while not perfect, they were enough to not have to stay in the hospital for a while and Rebekah came home with a good appetite.

White Blood Count 1.6 (Normal 4.5-17.0)
Red Blood Count 3.86 (Normal 3.8-5.4)
Platelet 288 (Normal 140-440)
(Her hemoglobin and hemocrit were also low but these, as we understand it, are not as critical as the above three).

There is another percentage/ratio that takes more things into account and addresses how "safe" she is around other people which is not back yet.

We also learned that if her counts get low and she needs a transfusion that there is a chance that they can do it in the office without a re-admission. That would be nice.

Finally, Frances and I have both noticed that in the last couple of days her face seems to "look" better and her eye is not nearly as "distorted". The doctor even commented that she looked better. Frances could not bring herself to to ask whether the drugs could really have an effect this fast.

In reality, however, we both kind of noticed this at the very start of the chemo last week. Please keep praying as I believe we are witnessing a miracle in progress!


Monday Morning Starts Another Week

This weekend was fairly uneventful. Rebekah has been doing well, taking her medicines and shots quite well and over all acting like a normal little girl. She is sleep significantly longer that she had before during the night, usually 12-14 hours.

Yesterday was really fun as grandma and grandpa came and took her for a walk outside for a long time. Rebekah would ALWAYS love to stay out longer. She definately enjoys being outside.

The only "signs" of anything that we are seeing is a rash across her chest that I believe is a reaction to either the bandaging or one of her medications. The girls are all on their way to the hospital right now to have blood drawn and labs run. This is our first blood test after chemo and this will tell us a lot about the next few days/weeks. If her red blood cell or plasma counts are down she will need a transfusion. If her white blood cell counts are down she might have to stay in the hospital to assist with avoiding an infection and/or treating with continuous antibiotics. She goes in for blood tests every 2-3 days when not in for chemo - a 75 mile round trip!

While waiting for the blood tests to come back (several hours), Frances is going back to the floor where we go for chemo and going to fix some of their computers - there is a donated lounge that has a couple of internet terminals in it that are not supported by the hospital and those computers had a couple of small break-downs (beat up keyboards mainly). Since we had the extra parts laying around I thought that was a good use of them. I have to admit we were warned by one of the nurses not to let ANYONE around there know that we knew anything about computers :)

Special thanks need to go out to our friends Mike and Tara who, with their two little ones, came and scrubbed out the camping trailer so it is really nice and ready to go next time. They spend quite a few hours and it looks (and smells) brand new inside! Thanks Guys.

For now, keep up the prayers for GREAT blood counts!