Eye Appointment, Etc...

Rebekah did not have a good night last night. She woke up many times and threw up again about 2 am. Mommy didn't get much sleep.

We were off to see the opthamologist at about noon, dropping Sarah off at Aunt TT's on the way. Rebekah got sick in the van a couple of times on the way. It wasn't looking real well for her to cooperate with the eye doctor. I had tried to medicate her so that she would be a little more calm during the appointment, but it didn't seem to work.

She wasn't real cooperative, but the doctor was able to do some looking/testing. She reiterated some of the potential concerns with the radiation that Rebekah has had - cataracts, blindness, laziness, the need for correction, etc...

There are no signs, yet, of cataracts. Those would be expected later.

The left eye (the one that got the worst of the radiation) does not appear to be irritated and her eye is moist, so we don't need to be giving her eye drops right now. (Previously, they warned us about dry eye and gave us drops to put in her eye. I haven't been using them because she has been tearing so much, but I wasn't sure if the tearing was from irritation and the drops would help with that. Rebekah is not a fan of eye drops, so I didn't want to force them on her if they were not necessary.)

The tear duct on the lower eye lid seems to be constricted or plugged. This is something that can often be corrected.

The orbit around her left eye is smaller than around her right eye. There may be some ability to stretch it.

The doctor wasn't able to determine if Rebekah should have some vision correction, since Rebekah wasn't cooperating.

The doctor is referring us to a doctor at Casey Eye Institute (at OHSU - Oregon Health Sciences University) who can deal with the tear duct, determine what should be done about the orbit around the eye and have the ability to do some testing/evaluation under sedation and have several pediatric specialists in one location. She was going to call the other doctor and have his office contact us to schedule an appointment. We will expect to go in for a consultation and then potentially schedule another appointment for further testing and possibly correcting the tear duct. With it being December and Rebekah continuing with chemo, who knows what kind of scheduling we will be able to make happen.

We called the oncology clinic this morning about Rebekah's face swelling. It is a little bothersome to Mommy and Daddy and Rebekah seems to be irritated by it as well. Her mouth seems to be sore as she is drooling again and when she coughs she often expels mucous. She is not using many of her words and I think that is mostly due to a sore mouth. The nurse at clinic wasn't overly concerned and checked with the doctor, who wasn't too concerned either but would expect to look at it on Friday during our appointment. So we wait...

We are Home

Debbie brought Sarah by the hospital about 5:30 this evening, so that she could come home with us. Rebekah was free to go at about 6 this evening and by the time we had everything packed up and ready to go it was closer to 6:45.

We had to be careful on our way home as the temperature was hovering around freezing in some places and so foggy that you couldn't see very far ahead.

Daddy had the house all warmed up for us with a nice fire going. It is always nice to come home to a warm house.

Rebekah kept most of her food down today, which is good. Let's hope and pray that continues. She didn't get a lot of food, but it feels like progress even if small. We will have to see how the night goes. This afternoon, we moved from all pedialyte to about half and half pedialyte and pediasure.

She is now having some diarrhea - thanks to the antibiotics and the dose of colace she got yesterday. Yesterday it was constipation, today diarrhea. I guess that is why we will need to have pediasure with fiber and pediasure without fiber. How many times will I need to change the bed tonight? Only time will tell. ** 11pm update - at least once - she coughed, got upset and threw up everywhere.

Rebekah is sitting on the couch with us watching TV. She was in bed for a short period of time and then asked to get up. Because she was having some trouble breathing (with the congestion) and Mommy was a softie, we let her get back up. She has been sitting nicely. Justice (the kitty) was sitting next to her and she wanted him down. Then, when he got down, she wanted him back next to her. We tried explaining to her that he is a cat and you can't always control them. I'm not sure she understood.

The left side of Rebekah's face is puffy. It has us a little concerned. Not sure if it is from the sinus infection or what. Please pray that it is better in the morning.

Tomorrow, Rebekah will see the opthamologist. Please pray that she cooperates and that it is a good appointment. Some answers would be good.

Looks Like We Will Go Home

It looks we will be going home this evening, unless something changes.

She has a little bit of a sinus infection, so she will go home with an antibiotic for that. The good thing about it, is that it is an oral medication and therefore I shouldn't have to give it in the middle of the night.

She will also go home with Prilosec for the acid reflux. We will not go home with Reglan. Doc is concerned that it will cause Diarrhea and since the acid reflux is mild isn't really necessary.

I dropped both prescriptions off at the pharmacy and will need to pick them up before we go home.

We still have our appointment with the opthamologist tomorrow, so hopefully we will know more about her eye after that.

Rebekah has continued to be tired and crabby without a lot of energy. She will tell me she wants up (in mom's arms) so I pick her up and then she starts saying she wants to go night night. I lay her down and she wants back up. She seems to want the comfort of Mom, but doesn't have any energy and needs the sleep. Just no pleasing her today. No fun.

She got her Teddy Bear from the Winterhawks. Two of the players as well as the mascot came in and let her pick which Teddy Bear she wanted (they each brought in 3 or 4, so she had a few to choose from). No Media came with them, so we won't see her on TV. We did get a Poloroid picture, though.

Rough Night & Rough Morning

We switched her nutrition to all pedialyte to see if she would keep that down and slowed the rate. She seemed to do better with that than with the formula or a mixture of both, but she still has coughing fits and vomiting.

She is now on both the Reglan and Prilosec, so hopefully we will see some improvement. I'm not convinced that the acid reflux is the only problem, but we will wait and see.

She has been fever free for 24 hours, but I still worry about it coming back. Her temperature is still somewhat elevated.

She was up several times during the night, alarms were going off and I didn't get much sleep. I'm tired, cranky and my allergies are acting up (as they always do in the hospital).

This morning, Rebekah wanted up in my arms, so I picked her up. When I layed her back down, I apparently got her g-tube pinned and pulled it out. Uugh! I called for a nurse and they put it back in. At least this time, we were in the hospital and not an hour away. I always try to be careful, but occasionally something like this happens. She does not like having it put back in.

The Portland Winterhawks (Ice Hockey team) had their Teddy Bear toss over the long weekend and they are coming to the hospital today to hand out Teddy Bears to the kids. They want some families that are willing to be "media" families with all the fanfare that entails. We filled out the necessary releases for that, so maybe Rebekah will be on TV. Hopefully she will be feeling ok when they are here.

Rebekah keeps saying that she wants to go bye bye. Usually, I can satisfy her with taking a wagon ride or something similar. However, with her counts pretty low (and dropping) it is best to stay in the room. She is definitely NOT happy with that.

We still don't know what the plan will be for going home. We'll have to wait and see what the Oncologist has to say today.

Daddy is at home. He has so much work to do and clients this afternoon, so he chose to stay home. I know it is hard for him to be away from us and not able to "pop" over to the room at a moment's notice. We are hoping that we will get to go home and see him at home.

Monday Evening

The CT scan didn't show anything significant, which is good.

We have started Rebekah on Reglan (sp?) to help with the acid reflux and will start her on Prilosec as well (they are working on the timing of it). We will hope that those two medications will solve the coughing/vomiting issues.

Meanwhile, she was on her nutrition for about an hour today when everything came back up. Uugh! Not a pretty sight. She has been coughing and dry heaving most of the day, so I wasn't convinced that it would stay down but I hoped for the best. Between last Monday and last night, she had lost a pound, which didn't exactly surprise me. I'm not panicking, yet, but I sure would like to get her tolerating her nutrition.

Her Hemoglobin and Hematocrit counts were very low, so she is receiving Red Blood. They split it into two "half units" and are infusing each half over 3 hours - instead of one unit over 4 hours. Apparently, when it is that low, they will often split it up. One more new thing learned today.

She has been tired and a little cranky (mostly because of the coughing) most of the day. Looking at her, I would not have known that her counts were that low.

Monday Morning

It was a rough night. By the time we got Rebekah settled into her room, Resident seen, blood cultures drawn, antibiotics administered it was nearly 1am - well past Rebekah's bed time. Then Mommy had to get her stuff from the van and it was nearly 2am before Mom got to bed. Then there were alarms going off throughout the night and by 7am, Rebekah was awake and raring for the day.

They started her on IV Fluids, but chose to hold off on the nutrition until morning.

We went down for a Chest X-Ray early this morning, which showed a little bit of something in her airway - not too bad, but something. The antibiotics that she is on may help with that - if it is bacterial.

During the Endoscopy last week, they took a little bit of tissue for biopsy. The biopsy showed some acid reflux, so we will begin to treat Rebekah for that with Reglan.

The Ear/Nose/Throat doctor came in this morning to look at Rebekah. He wants a CT, so we will be going down for that in a little while. She hadn't been started on the nutrition, yet, so we were able to get the CT scheduled pretty quickly. Because she will need anesthesia, she needs to have an empty stomach. We had just gotten everything we needed to start it up, when doc came in.

We will be here until at least tomorrow night, but there is some hope that we might get out of here tomorrow night. I'm not going to hold my breath. Meanwhile, Rebekah has an appointment with the Opthamologist Wednesday afternoon. I'm not cancelling it yet, but we will have to wait and see. It all depends on whether anything shows in the cultures and if her fevers continue. She has to be fever free for at least 24 hours, have 48 hours of antibiotics and clear 48 hour cultures.

Daddy is at home working and frustrated that he is not here with us and not sure whether to bring the trailer down later. It would be nice to know for sure when we would be able to leave, but we just can't know for sure.

Sunday - Back To The Hospital

If you have read the last couple of updates you know that things have not been going real well since we got home right before Thanksgiving.  Today was unfortunately not a change from that and we are headed back to the hospital  Chest X-rays and antibiotics have been ordered to be performed immediately upon arrival.  

Rebekah continued to be upset, throwing up, etc. through today and then this evening started spiking a fever.  She was well over 102 at her armpit and as high as 104 something on her forehead.  It snuck up on us quite fast.  Not good.  This last chemo was the one that is most likely to cause serious problems with neutropenia (sp?) with low counts and infection.  It is also the one that caused us our longest stay total in the past.  

Mommy and the girls headed in tonight and daddy will try and get a few things cleaned up, packed and head in tomorrow.  Unfortunately with being gone for thanksgiving and all we have not had any chance to do anything with laundry, cleaning the trailer etc. from our last stay and we figured (blindly) that we would have 2 weeks to get everything taken care of before our next hospital stay.  

Praise God again for the Dunham’s who are meeting us at the hospital to take care of Sarah on a moments notice and pray for a miraculous recovery.  

A Not So Good Day

Rebekah has been throwing up all day. I'm sure I've changed the bed at least five or six times today. The laundry machine has been going non-stop and it's only been bedding and clothes and such from her vomiting episodes. It is hard to keep medications in her when she is throwing up so much.

Tonight I tried to back her down to Pedialyte (hoping that would keep her hydrated and stay down), but the pump kept erroring saying that it was empty. After trying a few things and calling the home health company, I had to add a little formula to it so that the pump can see the liquid. I'm hoping she will keep it down and then I can start to add a little more formula to get her back up again. If she continues throwing up, I'll have to call the doc and see what else to do.

We did manage to make it to Grandma M's and Grandma A's for Thanksgiving dinners. Rebekah did ok. We did keep her off her nutrition while we were out and about. We didn't want her getting sick and having problems and she wasn't asking to have it connected. She doesn't like being tied to a pole. With other kids around, she has to be watched very carefully if she's connected since one wrong tug could mean a trip to the ER. All things considered, we decided to keep her nutrition off most of the day.

Rebekah woke up about 1:30 this morning, upset. I got her some medicines and put her back to bed. About 2:30 she was coughing, screaming and throwing up. She woke Sarah up in the process. I got Daddy to help with Sarah. I got Rebekah changed, her bed changed and put back to sleep and layed back down. Sarah continued to fuss and cry and not go back to sleep. I'm not quite sure what her problem was. A little Tylenol and a sippy cup of water and enough time and she finally went back to sleep, but it wasn't until around 5am. Mommy didn't get much sleep.

I couldn't get both girls to sleep at the same time today, so I never got a chance to take a nap. Maybe, I'll get to bed a little early tonight. Hopefully, the girls will sleep well tonight. One day at a time, one hour at a time, one minute at a time... That is about all I can do.

Thankfulness

Happy Thanksgiving.  We finally made it home last night just after 8:30pm.  It was 27 degrees at home when we got home.  

Rebekah was really happy to be home, as were we.  It is good to sleep in your own bed.  Although “sleep” was apparently going to be a misnomer.  Rebekah was up sick multiple times throughout the night and needed bedding changes a couple of times.  

Sarah remained with Grandma M last night.  It didn’t seem right to pick her up on our way home, which would have involved waking her, only to bring her back home to go to sleep.  Assuming we can make it our first Thanksgiving stop today will be at Grandma M’s anyway.

Obviously Thanksgiving is really special for us this year – as is every day actually.  We are extremely thankful that Rebekah is still alive and with us.  We don’t say this callously or off hand so please stop and think about it when you are with your friends and family today.  Think about the things that upset you or you work so hard on throughout every week and then think about the things that REALLY matter.  We have found out this year they are not necessarily the same.

As stated last week we are really scared of starting something by giving out specific thanks here but we just can’t seem to get away from it today.   We are especially thankful for:  

Dr. Olson, Dr. Norwood, Suzanne, Gina and all of the staff at the oncology clinic at Emmanuel Children’s Hospital as well as the absolute hero nurses:  Jody, Melanie, Heather, Stephanie, Elizabeth, Ron, Katie, Megan, Debbie, Sue, Lindsee, Betsy, Wendy, Nichole, (and those we are mind-blanking on right now).  These are the people who have all worked together to keep Rebekah alive and us comfortable.

The Dunham’s who have been taking care of Sarah for most of our hospital stays and loaning us their vacation home.

Mike and Tara Shannon who faithfully have been taking care of our home while we are away.  They have been quiet, behind the scenes troopers who have been there from day one (which not too many people have).  Tara even realized that we were coming home yesterday and that the house was under 50 degrees and called to ask if she should turn on the furnace for us.  (We generally try and heat by wood only to save heat but thought turning on the furnace till we got home might be a good idea…)

The Banks Fire Department who has been putting up with daddy’s absence from his responsibility to the department and the community as well as their donations and support of the breakfast.  Specifically to Capt. Mark Hornshuh for his support in so many ways and the Herb family for their repeated, ongoing help.

All of daddy’s clients, adoption agencies and other attorneys he works with for keeping business coming and understanding our situation.  Specifically to Robin Pope and to Cathy Dexter and Susan Moffet.  

Angela, Steve, Joe, Homestead Buffet and Pepper’s Mexican Grill for their help with fundraisers that have kept us going.

Kory’s Foundation who, with no exaggeration, has made it possible for us to continue to be a family together through all of this.  Bob and Becky Alonzo (Maggie’s Aunt and Uncle) for donating their time and money to carpet the new playroom AND much more of the house.  HelpingHands and Our Place Christian Church for work days and installing Rebekah’s play structure.  

All of those who have donated funds or provided other assistance through www.HelpRebekah.com

And of course our family, especially Grandma’s and Grandpa who have done just about anything and everything from giving money and buying things to visiting to mowing to…  

We know that we are absolutely missing a lot of people here so please see the gratitude page at www.HelpRebekah.com for even a more extensive listing of those that have been invaluable to us and made the last 7 months even possible.  

And to be open and honest here, what really REALLY hurts the most is that we can not even imagine how we can repay or make up for what all of these people have done for us.  If you know any of them and can help us repay them, even with just more thanks, PLEASE do so.

No Real Answers Today

Rebekah had her Endoscopy today and it came out clear. She has nice pink tissue. That is good news, but doesn't answer the question about why she is having trouble swallowing and continues to have the coughing issues. The next step seems to be to involve an Ear/Nose/Throat doctor as well as a Speech Therapist to work with her on eating. We are concerned that encouraging eating might make matters worse. Uugh!

We still expect to go home this evening. Rebekah needs an antibiotic before she goes that will take two hours to run. We don't really want to hit rush hour traffic anyway, so we are not pushing too hard to get it started.

Once again, Rebekah woke up early (6:30 or so) and wouldn't go back to sleep. Mommy put on some cartoons for Rebekah and dozed a little. She has been a crabby girl most of the day. Not much different from the last couple of days. I think she is really starting to show the "not happy to be in the hospital" attitude. She has moments of being fine and then all of a sudden she is crabby and screaming.

The Versed that she was given for the Endoscopy didn't help with the attitude, either. And she took quite a bit of the Versed and Fentanyl to put her into lala land for the procedure. She seems to have built up quite a tolerance.

Very early this morning (just after midnight), she had another vomiting episode. She got it everywhere - her bed, the floor, Nurse Megan, Mommy, etc... It took quite a bit of clean up. Not really a good way to start then night. I suspect that it is from the chemo. We seem to be seeing more and more of it while we are in the hospital. A fact of life, I guess.

One of Those Days

Rebekah slept well last night, after she finally went to sleep and really didn't wake at all during the night through all the diaper changes and vitals checks. The machines only beeped once or twice and Mommy was actually able to get a "good hospital" night of sleep, stirring most of the times when the nurse came in, but not having to get up too much.

However, Rebekah woke up at 6:45 and didn't want to go back to sleep. I convinced her that it was still night night time and she was quiet for a little while, but by 7:15 she was throwing up all over everything. I was able to get her cleaned up and cared for without needing the nurse's help (after all, it was shift change time). At that point, there was no chance of going back to sleep. Off we went in the wagon...

She was a crabby little girl most of the morning wanting to go go go and not wanting to be in her room. One minute she wanted to go in the wagon, the next she wanted to pull the wagon and the next she wanted to go in the stroller. Then around 10:30, she fell asleep in her stroller on one of our rounds around the ward. She slept, in the stroller for several hours... and woke up crabby. Uugh!

New friend Jill stopped by (while Rebekah was asleep) and hung out and allowed Mommy to get a shower and relax a little. She scored big by bringing Rebekah a Dora blanket and some other gifts. And she brought some pumpkin bread, too, which is delicious. I'm not sure whether I will share it or not. Her son is doing really well and she commented that she worries about how other mom's will feel about that. I think it is fabulous that her son is doing well. I would much rather see all the kids doing really well than any of them doing poorly. Even if we are having a rough go, I'm happy to see other kids and their families doing well. Anyway, it was great to meet her and get to know her. At the same time, she (and I think all of us with a child that has been diagnosed with cancer) worries about whether it will come back. When (if ever) will that worry come to an end? It is good to be able to sit and talk with someone who has dealt with some of the same issues that we have.

Because Rebekah's throat has continued to have issues, we really wanted to have it looked at. The doctors were considering whether to have an Ear/Nose/Throat doctor or a Gastroenterologist look at it. One doctor suggested one and the other doctor suggested the other. We have been talking with the doctors about it for the last couple of weeks and they had said that we would have something done while we are in the hospital this week (while her counts are good).

When I saw the doctor this morning, I asked about it. She said she was going to call the Gastroenterologist and try to set something up. Since Rebekah had been off her food for a while, let's keep her off them and she'd get back to me within an hour. I didn't hear and didn't hear and finally checked with our nurse to see what she knew. She told me the "orders" had been put in, but she didn't have any timeframe. She did some checking and said that they expected it to be in the afternoon - maybe 2:30.

When they came for her, the case manager was explaining the procedure and it was a "Barium Swallow/Lower GI Follow Through". That wasn't what I had understood, although I hadn't asked all the questions that I should have. I was expecting that they were going to put a scope down her throat to look at it and see what might be wrong. The case manager didn't realize that the oncologist hadn't come back in to talk with me.

We ended up cancelling the procedure, until we had more information. We wanted to make sure that it was the right procedure and we didn't have enough information at that point to know that. Both Scott and I were frustrated and Scott was mad at me for not getting better information. I let him down as well as myself and Rebekah. Too many communication break downs.

After more information (this was a non-invasive procedure and therefore less likely to cause infection than a scope would be), we agreed to the procedure and had the case manager trying to get us back on the schedule, which she was able to do.

Then we had to figure out how to get Rebekah to swallow Barium. We figured the best way, was to give it to her in a syringe and we took a couple of syringes down with us. She drank it up really well (from the syringe), without any complaints. The test did not show any blockages or specific problems. So, we now have an Endoscopy (scope down her throat) scheduled for tomorrow morning at 9:45. Hopefully we will know more after that. We don't know whether they will find anything or not or whether if they find anything if there will be any treatment that can be done. It is more than likely from the Radiation, but we don't know for sure.

Rebekah's throat/swallowing issue reminds us of Josh and the issues he is dealing with. He is scheduled for another "stretching" tomorrow. Maybe we will see him. Please keep him in your prayers, too.

Grandpa arrived just after we went down for the procedure, but was able to wait until we got back to the room so Rebekah could see him. Grandpa drew her a picture and she appreciated that. Grandma M and Sarah came by for a little while this evening, too. When Grandma got here, she asked if it was "Movie Night". It's pretty sad when Grandma knows that Tuesdays are Movie Nights and there is Popcorn, Candy and Pop - and a movie, too. We have been around here way to much when even Grandma know about "Movie Night".

Rebekah didn't get much nutrition today, since she was off it most of the day in preparation for the procedure and she'll need to be cut off at 3 am for tomorrow's procedure. But she has been gaining weight (Mommy is noticing it when she picks her up) and she's getting enough IV fluids to "maintain" her (and keep her peeing), so a lighter day is ok. We just don't want too many of them.

She is sleeping now and Mommy is going to head to bed soon, too. We are still hoping to go home tomorrow evening. So, please pray that we can go home tomorrow and that Rebekah and the rest of us are feeling well on Thanksgiving so that we can participate in the extended families' activities.

Back in the Hosptial

We dropped Sarah off at Grandma M's on our way home from Sunriver. Grandma M is watching her this week while we are in the hospital - she took a couple of days off to help us out. We got home last night at about 5 pm. After getting home, we unloaded the van (at least the parts that didn't need to go to the hospital), ran a load of laundry, checked through the mail (personal and business), repacked the bags that needed repacked and loaded up the trailer to head back down to the hospital.

As we were packing the trailer, we discovered that the propane tanks were empty (Apparently the furnace was left or bumped on...) With the temperature already down to 37 degrees, we didn't look forward to a night without heat. Daddy knew that one tank was low but believed the other to be full. Well, after finding somewhere to fill them up it turns out the one daddy thought was full actually was, but it had something in the line blocking the flow. It seems to be working okay right now.

We are back in the hospital as scheduled. Rebekah is having a rough day and not at all happy to be back here. She is getting herself upset and then throwing up because she is all riled up. It just builds on itself and she doesn't stop until she is exhausted. She is laying in bed with what can only be described as "snoring respirations" which means that there is something partially blocking her airway. Hopefully the evening will go okay.

Tommorrow a new friend (Jill) will be comming by to see what she can do to help. Jill's youngest son has been in Emanuel with cancer and has been through a lot of what we are going through. Even just having someone to talk to that understands is great.

Pray for a good night for mommy and Rebekah in the room and daddy in the trailer. It will be another cold windy night outside. (Good thing the propane is full!)

Sunday AM / Packing and THANK YOUs

We are packing up here, Sunday morning.  It is going to be difficult to leave as we have had a wonderful time.  It didn’t work out the way it was supposed to (with Steve and Pat not being able to join us but it did work out.  Especially delightful to us was the ability to meet a “new” friend Ashley and have her help this week.  THANK YOU ASHLEY! And as if that were not enough, Ashley's family even had us over for dinner last night.   

Several have commented about what Frances meant by being lazy.  Well, you should know that it meant taking care of a household including meals, dishes, laundry etc.  It also meant being up every couple of hours day and night to solve Rebekah’s problems, including bedding changes and just holding.  And to top it all off, it meant she was up early, this packing day, to make our favorite breakfast in the world, sausage gravy and biscuits.  In the middle of trying to pack to leave (which is in itself a 3 hour plus job) she was up doing that.  She is a great woman!

Another thing that I don’t often do here is draw major attention to specific people that have helped us.  I think the main reason is that SO many people have helped that I am afraid to start because you all deserve the attention here.  That said, there is one family, the Dunhams, that I have just have to point out.  You may have noticed their name in the middle of the gratitude page of www.HelpRebekah.com, or you may have not.  The Dunhams are our regular babysitter taking care of Sarah when we are in the hospital and cannot do so.  And now, they are the angels who have provided this last week’s vacation too – basically all expenses paid.  I hadn’t written it to do so, but as I was printing out the “thank you” that I put in their guestbook, it occurred to me that it ought to be here as well.  Here it is:



11/14-11/20/2005.

I will type because you can’t read my handwriting.  I hope Frances will write something to be a bit more personal.

I spent breakfast this morning reading through the guest book.  Most of the time I had tears flowing down my face because of the wonderful generosity you have.  I guess it doesn’t surprise me to know that we are not the only ones that you are SO wonderful to.

Having you take care of Sarah the past few months while we have been in the hospital with Rebekah has put you on par with the angels.  You have allowed our family, or at least my daughter to live a somewhat normal life in the middle of all of this turmoil.  We thank you so much for that.  The love for people that you have in your hearts is evidenced in everything you do and very clearly in this wonderful home even when you are not here.

It has been many many years since I have had a vacation at Sunriver and the first time that Frances or either of the girls has.  Coming to such a beautiful place and staying in such a beautiful home has been a great respite.  We have not done much (except chase girls around which has been a 24 hour job), but we did get to Mt. Bachelor, to the High Desert Museum and to visit some friends and family.  We really REALLY want to be able to come back some time, please!

We feel blessed 10x more than we could ever dream to have you in our lives and be able to count you as friends.  You won’t realize it reading this but I have to keep stopping to cry as I think about how wonderful you have been to us.  I guess that says what is in my heart more than any other words I could write so I will say the only words that I can think of yet again:  Thank You.  

-Scott, Frances, Rebekah and Sarah too.
www.HelpRebekah.com

Please join us in thanking Debbie and Brian Dunham for ALL that they have done for us.  I (or they) might come to regret it, but their email is:  “debbie @ dunhamfamily.org”   (Remove the Spaces).

Pray for a safe trip home and a quick, basic stay in the hospital starting tomorrow morning.  

Saturday Update

Believe it or not, at the moment, both girls are sleeping quietly. Not sure how long it will actually last, but thankful for the time anyway.

Yesterday was a pretty good day. Mommy and the girls hung out at home while Daddy worked (Suit and tie and to the courthouse). Other than Dad's trip out in the morning, we pretty much hung out at home. Mom's cousin Heather and her family came out for dinner and we ordered Pizza (thanks again to a gift certificate). It was good to see them and spend some time visiting. Kelbe and Morgan helped by playing with the girls while the adults visited.

When I went to put Rebekah to bed, I noticed that Rebekah's dressing around her central line was coming off and the "tubes" were not looped up like they should be. So I called for Daddy to help with a dressing change. Rebekah does not care for the dressing changes, but it really needed to be done. The dressing was coming undone enough that it was no longer sterile, the tubes no longer had any protection against pulling (ie. the loop) and I wanted to see the site to make sure that everything looked just fine (which it did). While we were taking care of the dressing change, our guests were tidying up for us - clearing the table, etc... Thanks!

The girls slept pretty well last night. I'm having some trouble sleeping and not exactly sure why - different noises, worried about the girls, the allergies or cold that I'm dealing with, stress, who knows...

Daddy was up early this morning trying to do some "urgent" work. After a bite of breakfast, the girls and I headed in to the outlet mall where we met up with Ashley (who is here helping us out again today - yipee) and did a little shopping. We did find a few things - a nutritional supplement to help with Rebekah's mouth sores, some flannel two piece jammies for Rebekah (the footie jammies don't work well right now because she needs to be connected to her nutrition over night) and some slippers for Rebekah (she had outgrown her last pair and you can't buy slippers during the summer-uugh!). This time, I bought her current size and the next size.

Then we came back to the house and got some lunch, put the girls down for naps and worked on a little laundry. It has been a lazy couple of days. At least, I'm feeling a little lazy. I haven't had much energy to do much of anything, so I guess it is ok to be lazy once in a while. Sarah got a bath and is back down for another nap (her first one wasn't very long). So we are getting some things accomplished. Ashley has been a great help! Her help makes it possible for me to get some things done and not have to worry about the girls.

Tonight we will be going to Ashley's house and having dinner with her family and then tomorrow we will be heading for home and getting ready to be back in the hospital Monday morning.

A Quick Update and New Video

A quick afternoon update.  Things are going pretty good.  Ashley is with us to help with the girls and provided a guided tour around the High Desert Museum where we saw lots of cool things.  More details later.

There is a smaller video up of us on the mountain yesterday at www.HelpRebekah.com in the Photos and Videos Gallery.  I apologize in advance for the quality as I only have my laptop (no decent video editing power or software) and could not get firewire working so I had to transfer over USB 1.0 which kept dropping and freezing at any higher quality.  The good news is that it should be small enough for even our dial up readers.

Thank you for your kind words of prayer and support.  

Wed Update on Thur Morning

Yesterday was another good day.  

About the only health item to note is that Rebekah continues to have problems with pain in the throat.  It starts by a small cough which is painful so she gets upset which makes her cough more and so on.  If we can’t calm her down it gets worse.  Some Tylenol, benadryl and morphine all help a bit but the morphine makes her constipated and then that hurts.  She is going through so much.

Yesterday we went up to Mt. Bachelor and played in the snow.  Girls in snowsuits, boots, mittens and crawling around (as much as bundled up Eskimos can crawl) on the snow drifts.  Rebekah loved it and Sarah was not at all amused and just wanted up in mommy and daddy’s arms.  We took some video and pictures that I hope to get up if I can find a moment.

In the afternoon and early evening we went to mommy’s aunt and uncle’s new garage (and house) in Prineville.  I say that because the garage is as big as the house and hides the house as you drive up.  Uncle Charlie says all the women in the neighborhood are mad at him and the husbands jealous.  I don’t remember specifics but the garage is something like 20 feet wide by 50 feet long and 16 feet high.  Sorry for the guy stuff.

Mommy’s cold has moved to her head and she was not doing well last night when got home and just wanted to go to bed.  I think she got to sleep through the night pretty well.

Today is off to the high desert museum with a babysitter to help which should be great and then dinner with some friends in Bend.  

More later if we get time.

Wed. Morning Somewhat Early

Daddy and Sarah are up eating breakfast and trying to let mommy and Rebekah sleep. I think we got almost 6 hours of uninterupted sleep whcih is not enough to be restful but way more than we have had in a long time.

Again the weather looks beautiful. It is no wonder why so many people like this side of the mountain!

Here are a couple of pictures from yesterday's trip to the mall:



To get the full idea of how this went, watch the short video in the photos and videos section at www.HelpRebekah.com

Tuesday Part II

If you read the last post you know how the morning started out.  After waking up the girls were still very upset, crying and just being overall pains in the butts.  Of course it could be that mommy and daddy got very little sleep so we were less tolerant of things…

Late morning they both went down for a nap and so did mommy.  Daddy got some work done (which I was supposed to be away from, but I did bring my cell phone and email.)    Some of that work involved a phone call to some clients who live close by and their teen age daughter is going to come by a couple of times later this week and help babysit!  Too cool.  

When the girls woke up we went for a short ride down to the local resort town mall.  There was no one there and we got to go in a few shops and look around.  Rebekah really liked the ones that had toys in them and was having a good time.  Sarah and Rebekah both walked a little bit and rode together in the double stroller that our hosts have here at the house.  We went into a candy store and spent a gift certificate that was also given to us and tried to find the softest piece of chocolate that might melt in Rebekah’s mouth.  She didn’t like it at all which was confusing to us – a girl that doesn’t like chocolate?????

We came back to the house and girls played together, took naps, pooped regularly (which for Rebekah is spectacular!), and over all had a good time.  It was so close to being “normal” again and we are so greatful.

Daddy made spaghetti for dinner and both girls actually ate some of the noodles.  Rebekah sat at the table with us and ate.  Again, wonderful!!!!  

Finally the girls went to bed and mommy and daddy even got 20 minutes of peach and quite out in the hot tub.  It is a full moon outside and a crystal clear night.  The 28 degree temperature was just perfect as we sat in the 103 degree hot tub and looked up through the trees at the moon.

We don’t know what lies ahead of us tonight, tomorrow or … but right now things are pretty good.  Thank you for your prayers so far.  Please pray for a continuing good time.

Tuesday Morning - A Quick Update

A quick morning update although there was nothing quick about this morning coming.  Both of the girls were up just about all night.  Daddy got very little sleep and mommy less.  Sarah is at the worst part of a cold and Rebekah was having lots of pain in her top (mouth) and her bottom as she was trying real hard to pass another very hard and large stool.  Basically we felt like a pharmacy and hospital room all in one dispensing drugs and taking care of patients, hand holding, cleaning up, etc. all night long.  Pray for rest and relaxation.

Vacation Day One - Travel

Well, we made it.   And our hosts have a beautiful BEAUTIFUL home in this “little” resort village.  The 5+ hour trip (with stops) was as uneventful as we could hope for. We drove through snow (on the side of the roads) and there was just a little bit of day or two old snow on the driveway when we pulled in.

The girls alternated crying or screaming most of the time – it would just not be right for there to be peace and quite for part of the drive now would it?  Rebekah watched her portable DVD player a fair amount of the time and even tolerated having the headphones on so mommy and daddy didn’t have to listen to Dora The Explorer AGAIN!  Sarah kept throwing her “binky” just out of reach of everyone so that we would have to make a stop and get out and find it.   Neither girl slept more than a few minutes on the entire trip.

Once we got close we stopped at a grocery store to pick up some basic food stuffs and then drove on in.  It took a couple of hours to get unloaded and situated but we managed.  The girls were not nearly as inquisitive about a new place as I thought they would be.  There are lots of steps and we are going to have to do some teaching about that.  

Mommy got the girls to bed and daddy spent a bit of time working on our hosts wireless system to get it up and running (I am typing on my laptop in the family room now so it must be working…).  Girls are in bed now and mommy and daddy are sitting on the couch together and just lounging.  Hopefully this is a good sign of things to come.

Pray for a very uneventful week please!

Ready for Vacation, Hoping to go

Well, the van is mostly packed. There are a few last minute things that will need to be loaded up in the morning. We will head into clinic in the morning and hope for the best - good counts (so we don't need any transfusions and so that Rebekah's immune system is doing better), no fevers, and nothing saying we can't go on vacation. Assuming all is well, we will leave after clinic for vacation.

It has been a busy day, getting ready. Grandma M came by to help with the girls. While she was here, Mommy took Rebekah shopping with her. She was pretty good while we were out.

If you don't want to hear about potty problems, skip this paragraph. Throughout the day, Rebekah would start wailing (all of a sudden) and complain of owies and often point to her bottom. It soon became clear that she was constipated. We switched her back to "with fiber" formula and gave her a dose of laxative. This evening, she finally passed her stool, with much screaming and complaining. It was terrible to watch her in pain and know that it was going to get a little worse before getting better and not be able to do anything about it. I'm going to hope (and pray) we are done with that (and that there are no continuing problems from it).

Meanwhile, we need to take enough "with fiber" formula as well as "without fiber" formula with us for the next week since we are unsure which we will really want. We switched to without fiber because she had so many problems with the diarrhea. Uugh! It seems we can't win.

Aside from being pretty cranky, Rebekah has thrown up a few times over the last few days. That makes us a little nervous for vacation. We will hope for the best.

Thank you so much for your love and support, prayers and comments.

A Wet, Cold, Tired Sunday Morning

It’s a cold, tired Sunday morning.  Rebekah was up pretty much most of the night throwing up, wanting her food on, then off, etc.  Now she is sitting on the couch with her Dora blanket on (up over her head) and picking “toe jams” out of her toes.  She absolutely HATES toe jams!  Mommy is obviously pretty worn from being up all night but Grandma M is due today to help so that will be nice.

Stepping back a few days.  Friday afternoon Daddy took the van to get our winter tires put on (luckily we did have winter tires purchased back when there was money!).  That will help eliminate the urgency of getting the normal tires replaced but they are so worn now that they won’t be able to go back on in the spring.  I did talk some more with the people at Les Schwab tires in Hillsboro and apparently there was some sort of communication failure and they are going to help a bit with some tires.  The cancer society is working on a couple of other Les Schwab stores as well and if they can get together we might be able to get the price down to something we can afford which would be great.  

Saturday morning daddy got up around 6am and did about 4 hours worth of office work and then went to put the tire back on the trailer – it was supposed to have been fixed while we were at Les Schwab on Friday.  When I went to take it out of the van it was obvious it had not been touched and was, of course, still flat.  Ugh.  Back to Les Schwab (35 miles round trip) and a weekend wait but it finally got done.  

Also on Saturday Helping Hands Melissa, Maria and Lisa all came and helped mommy in the house and played with the girls.  They helped get the fridge in the trailer cleaned out so it can be defrosted too.  The coolest thing daddy saw that they did was play “make up” with the girls.  Rebekah looks absolutely beautiful with finger nails painted purple!  She learned the part about holding her fingers out and apart so they can dry so well that she is still holding her hands that way.  She was also so proud to tell me about having her eye make up put on and her face too.  She really really enjoyed that as did mommy enjoy the break.  Thank you!!!

Right now we are trying to see if we can get the van packed today so we can leave on vacation tomorrow.  We are not sure if we will be able to get out – it all depends on Rebekah’s visit to the hospital tomorrow morning.  If no blood or platelets are needed and her counts are back up it’s a go, otherwise….  We are also not sure about how long we can last in a strange environment without help.  Please pray that it works out and actually does turn out to be a vacation.

A Couple of Requests From our Readers

I know that you don't all get to read every comment that is written, so we thought we would bring these requests to your attention.

Through this process, we have come to care for many families who have kids with medical problems. Our heart goes out to these families and many others. Prayer is powerful and when we cannot help in a physical sense, we can help with prayer. So we ask that you pray for these families.

One reader said "Jojo's daughter has joined Maggie in heaven. Please keep her family in your prayers." When we saw this comment, it was very emotional for us. With Maggie's recent death and everything we've been dealing with for Rebekah, we were not sure how to bring it to your attention.

My Kid's Mom said "please say a quick prayer for my daugher, too, who's been in the hospital this past week." So, I ask that you pray for her 17 year old daughter who she calls The Princess. Again, our emotions were working overtime reading this comment.

Some Good Times, Some Bad Times

It has been another one of those days. Over the past 24 hours or so, there have been several times where both Rebekah and Sarah have been screaming inconsolably. Mommy is frustrated, not being able to quiet them both down. Rebekah seems to be in pain. Either her mouth, throat, tummy or bottom seem to be hurting and she will just start to wail, seemingly out of the blue. Sarah seems to be dealing with teething pain. They have both gotten pain medications in one form or another.

Mixed in with those times, there have been good times. A little earlier today, they were watching a Dora DVD on the TV in the playroom and were both dancing during one of the songs. Mommy had to smile, watching them. A while later, Rebekah took one of the throw pillows and layed it on the floor and then layed down on it. Just after she layed down, Sarah came over and layed down on the pillow, too. It was really cute to see. Then, Sarah got her own pillow and layed on it (head off one end and feet off the other end with her butt in the air).

Sarah has been pretty "needy" the last few days. Maybe it is teething, maybe just not feeling well (she's had a runny nose, too), or maybe just wanting attention. A few times, when Sarah was upset, Rebekah would go to her and try to calm her down - talking to her, giving her a hug, taking her by the hand, etc... Other times, Rebekah would tell Mommy that Sarah needed to go Night Night. She sure is looking out after her little sister.

The girls have been showing each other quite a bit of affection. Rebekah has been giving Sarah hugs and kisses at bedtime. Sarah will see Rebekah sitting on the floor and go over to her and sit with her (like in her lap, half on top of Rebekah). It is good to see them enjoying each other.

More hurdles are being thrown in the way of vacation. Please pray for peace of mind as we work through the details.

The house feels like a disaster area, but I don't know what to do about it. The living room needs painted before some of the furniture gets moved around. (The remodel cut a doorway from the living room into the playroom, so the area around the new opening needs paint - which realistically means the entire room.) The playroom needs trim completed before we totally set up the furniture. Do I unpack the books and things back onto the bookshelves which are temporarily put into the entry way into the playroom, or do I wait (leaving the boxes covering the dining room floor) in the hopes that we will be able to get shelves built soon. And the list goes on... Uugh! In so many ways, I just don't know where to start and am so overwhelmed (not to mention exhausted) to do anything - which really isn't helping matters.

Back from Clinic, No Transfusions

We are home from clinic without needing blood or platelets today. That is always a good thing. Rebekah's counts are still dropping, so Doc says we should expect to need blood and platelets on Monday. I, personally, don't think we will, but I'm not an expert.

I talked with the doctor about Rebekah's eye and he suggested that we get her examined by an Opthamologist. I agree that it makes sense to do so. He called the doctor Rebekah has seen in the past to touch base with her and the Eye Clinic called to set up an appointment. That is now scheduled for the week after Thanksgiving.

I also talked with the doctor about the continued complaints of pain. There are no visible sores in her mouth at this time. Hooray for that! It has been a long time since that was true. He will probably check with a gastroenterologist and potentially have them put a scope down her throat next time we are admitted to have a look. I'm frustrated that her throat hasn't seemed to heal after radiation and want to make sure that we aren't missing something.

Meanwhile, when we checked her weight this morning it was 16.7 kg (almost 37 lb). That is more than a pound heavier that when she was diagnosed with cancer. That is great! Despite how often it seems that we are failing with the nutrition (vomiting, not getting her 6 cans each day, etc...), it seems to be doing the trick. We are supposed to continue as normal. After her dramatic weight loss during radiation, I'm happy to finally be above 16 kg (where she was at diagnosis).

Well, I had better finish this up. Sarah keeps escaping from the playroom (the doors are not on, yet and she can scoot around the temporary fencing and Rebekah is sitting in Sarah's high chair and saying she wants to eat and drink. So far, it has been more talk than reality.

One of those days

Did you ever have “one of those days?”  So many things were going so good today that you would just have to think nothing could go wrong.

Friend Karen and son Ian came over today and sat with the girls all day long so mommy could get out to appointments, some shopping etc.  Mommy really really enjoyed being out and it was good for her.  The girls played well with Ian and generally had a good time.

Daddy had some new, nice clients today and was able to wrap up a lot of work.  Grandpa came out and mowed the lawn and played with Rebekah a while.  And the weather was really nice.

Ok, so why not so good?  I, daddy, am really frustrated.   Number one and most important to me, Rebekah is having some problems that don’t seem to go away.  In fact, they seem to be getting worse.  Her left eye was only open ½ way at most today and she very clearly seems to be favoring her right eye.  She wants to eat so bad but after the first or second bite of anything in her mouth she coughs, throws the food and screams in pain.  She is constantly saying/signing “owie” and pointing to her mouth.  I am afraid the radiation effects are starting to take toll and it really hurts to see your little girl hurting.

In addition I have a couple of emergency cases that I am trying to figure out how I can get them done before we head off for a vacation – I don’t want to ruin our shot at a vacation because I can’t get them done.  Then we had an electrical problem at home today.  One circuit went “bad” and doesn’t seem to work. It covers part of my office, the laundry room and some of the outside lights (as well as the overhead light in the girls’ new playroom.)  I can’t figure it out (male frustration here) and don’t know who to call.  Ugh.  

Then I look at all the work that needs done to get the van ready to go if we can go on vacation.  More hours that I don’t know where they are going to come from.  And oh ya, did I mention there is a flat tire on the camping trailer we live in at the hospital and we need to get that fixed too to be able to leave for the hospital the day we come back from vacation????  

On top of Rebekah’s problems, I feel like so many hurdles are being thrown in the way of getting to get away and that’s pretty tough.  How about that – it’s not Friday, we’re not at the hospital and I’m ranting anyway.  

How about some prayer covering please!

Tuesday Evening

It has been a decent day. The girls have enjoyed playing in their playroom and watching dvds on the tv in the playroom. Well at least Rebekah has enjoyed it, Sarah could just about care less about the tv (although I have caught her looking at it a few times today).

This afternoon, Rebekah and Sarah were taking turns riding the horse. Sarah was not quite grasping the concept of sharing, but Rebekah was doing a good job of taking turns. Sarah really seemed to enjoy being on the horse and was doing a great job of balancing on her own and making the horse bounce. Rebekah wanted to make sure that Sarah rode the horse.

Rebekah has had bouts of energy and then bouts of being crabby and not feeling well and complaining about owies. She is actually drinking some from her sippy cup, which is good to see. I have cut her nutrition back to just formula without the added water and she seems to be tolerating it ok.

Rebekah has spent some time in time-out over the last few days. During one of her time-outs, Sarah went over to her and gave her a hug. It was very adorable to watch, although I'm not sure how well the time-out worked with some loves from her sister.

Sarah, too, has had good times and bad times today. She seems to be cutting another tooth and so she would scream at times. If Mommy picked her up, she might quiet down. A little teething tablets and tylenol seemed to help.

Rebekah has been a little warm, so I'm concerned about fever. Please pray that her temperature stays down and that there is not an infection brewing. If her fever goes above 100.5, we'll be back in the hospital. Let's pray we don't have to do that.

It has been one of those days when Mommy has been needed by one or the other of the girls most of the day. Very little has gotten done around the house. Just another day in our home.

Friend Katie came and picked up several loads of laundry for us, washed and folded it and brought it back. That is such an incredible help! It took a big load off mom's plate. Thank you Katie. At least that is one thing that Mommy doesn't have to worry about.

Tomorrow (Wednesday) Mommy will get a chance to escape. Friend Karen will come and watch the girls, so Mommy can get out to a couple of doctor appointments and get some things done that she just hasn't been able to do. Mom is looking forward to that.

Thursday we have a clinic appointment and have been told to expect Rebekah to need both blood and platelets. If she needs one or both, it could be a long day.

Tuesday Morning Update

We’re not exactly sure how to describe how Rebekah is doing now that we have had a couple of days at home.  In some ways she is doing really well and it others not so well.

She is objecting more and more to having her tubes connected to her during the day.  Obviously she’s not fond of being tied to an IV pole.  She is, however, doing real well with it when she is.  In fact she showed another “new” girl at the hospital last week the “proper” way to hold your pole and tubes so that you can walk safely.  That was kind of cute.

Rebekah is enjoying running around a couple of hours a day and then her energy diminishes.  She SO enjoys her new playroom.  Even though it is not quite finished the carpet is in and she can get there.  Some of her toys are there and even though its not connected to anything else, she can connect her new DVD player to the TV in there and watch Dora “Doe Doe” or Thomas “Choo Choo”.  Sarah is also very much enjoying it.  Am not sure how safe the two of them are together alone in there but they are having fun.  Yesterday Sarah tried to stand on or sit on (not sure which) Rebekah’s Barbie car and got both of her feet stuck through the sunroof.  Daddy thought it was hilarious but Sarah was not so amused.  

Rebekah has been able to sign “owie” or “hurt” for a while but has not been using it totally appropriately until recently.  Unfortunately she is using it a lot now.  It is real clear that her mouth and throat hurt here quite a bit.  She wants SO much to eat something and then when she does she starts screaming and yelling and “saying” owie pointing to her mouth.  She knows mommy has medicine in a syringe to make it feel a little better and she asks for that too much.  Even the morphine is not making the pain go away.  She does enjoy her ice chips and squirting water into her mouth with a syringe and I am sure that feels good for her.  

Although she was not able to come in and help give mommy a break because of her kiddos being sick, Aunt TT did some shopping for us yesterday.  THANK YOU!  Mommy really is running ragged day and night.  Can you help her around the house or come watch the kids so she can get a rest?  Let us know.

Please pray for good health and blood counts this week so we can take a “vacation” next week to a house in the mountains that Debbie and family very kindly donated to us.  Please pray also for strength and support for mommy and for daddy to be able to get some focused work done.

A Need Anouncement

We wanted to make a quick post here to draw attention to a “new” need on the www.HelpRebekah.com site.  We are in need of a woodworker to help us with some built in shelves in the hallway leading to the new playroom.  If you have the skills to help build and finish some adjustable shelving and the desire to help, please give us a call.  

Photo Update at www.HelpRebekah.com

www.HelpRebekah.com has now been updated to include photos of the pancake breakfast!  Check out the Photo and Video Album link down the left side.

Rebekah's (Angela's) Breakfast

A very big special thank you to Angela Kohama and all of her crew for organizing Rebekah’s pancake breakfast this weekend.  Until yesterday morning, Angela had never even met Rebekah and yet this high school senior poured her heart and soul into this event and achieved a success that any project manager in any business would be proud of.

We had people from all over the area including at least one family from Washington.  Friends, family, co-workers, rallyists, the fire department, and strangers alike all turned out thanks to Angela’s advertising.  Home Town Buffet and Pepper’s Mexican Grill provided nearly everything free of charge.  The few remaining little (and I mean very little) needs where met by the volunteers that were there.  

Rebekah, Sarah, mommy and daddy were even able to make it for much of the morning and Rebekah was in good enough spirits to walk around and “talk” with people, hand out her own business cards and even say “thank you” in a way that only she could.  We don’t know if she had any clue that she was the reason they were there.  Whether she knew why or not didn’t matter, she was just very happy that they were there and she was some place other than the hospital or her bed at home.

The people that came had HUGE hearts and poured out their emotions as well as their dollars to support Rebekah.  Throughout the day there were quite a few tears in the eyes of people but most of all delight in helping out this little girl.  At the end of the day there was $3013.00 in the cash box for Rebekah’s trust.  Thank you Angela and thank you everyone who helped!!!

We're Home - Busy Weekend

We are home. We were discharged Saturday about 11 am, the earliest I think we have ever been discharged. Rebekah had a pretty rough night Friday night. She was up and throwing up twice during the night. Her nurse thanked me for giving him something to do. Glad he "enjoyed" it.

We now have new carpet in the playroom, living room and hall. Yeah! Thanks so much to Bob and Becky for getting it done for us. With the carpet, the playroom is now usable and the girls have been enjoying it. It still needs some trim and things like that, but having the carpet done is fabulous.

Grandma M, Mom's Aunt and Uncle and cousins came to help us get things back in order after the carpet installation and just getting home from the hospital. All the gates had come down and the furniture and stuff moved, filling the bedrooms and dining room. The house is in better shape, but there is still A LOT to do to get it cleaned up. Mommy is a little overwhelmed with how much.

Saturday evening, the power went out and stayed out for about 2 and a half hours. Daddy got the generator (on the trailer) going so we could have a light and the tv working. Everything else was done by candle or flashlight or battery.

Rebekah went to bed the first time about 7 pm, but it didn't last too long and she wanted back up. She watched tv with us for a little while and drank about 8 ounces of water one syringe at a time. Then, again about 9 pm she went to bed for good. At about 1 am, she was screaming, so mom checked on her and gave her some benadryl and zofran (anti-nausea) medications, changed her diaper (and the fitted sheet on her bed) and turned her lullabies back on.

At about 2 am, while Mommy was laying still awake she realized that we had not given Rebekah her shot. Uugh! So she got it ready and gave it to Rebekah. That woke her up and it took a little bit to get her back to sleep.

Then at about 5 am, Rebekah's food pump started making noise (very loud alarm). It had run out of food. Mommy was too tired to "fix" it and turned it off. Daddy offered to help get it back running, so with his help we got it going again.

We all got up this morning and headed over to the Pancake Breakfast held in Rebekah's honor. Rebekah had a lot of energy and was walking around, playing with some of the kids who were there and just brightening the day of those she saw. The breakfast was a great success. A Big Thank You to Angela for taking this on as a High School Service Project and to Joe for helping her out as well. Thanks, too, to all the volunteers who were there to help. We were able to stay for almost 4 hours before both Rebekah and Sarah started getting tired, so Mom took the girls home while Daddy stayed.

While at the breakfast, we met a young woman who is a Ewing's Sarcoma survivor. Her husband "surprised" her with the breakfast. She had never met another Ewing's Sarcoma patient. She was a teenager when she was diagnosed and has survived many years. She has had her issues, but glad to be alive.

Once home, both girls went to sleep and Mommy was able to get a little bit of a nap. That was good, but Mommy is still pretty tired.

Rebekah continues to have diarrhea, a nasty diaper rash which is getting a little better, not tolerating her food very well (we are having to dilute it which may be part of the diarrhea issues). Her spirits are up, though, which is great to see.

News Update

Just a quick NEWS update.  There is a new news story from the Portland Tribune over at www.HelpRebekah.com.  Check out the “In The News” Link.

A Rough Night

It was a pretty rough night. She got pretty agitated last night when we needed to come back to the room because her pump battery had run out. It was about 7:30 pm. She was acting tired, but surely did not want to go to sleep.

Mommy stepped out of the room for a few minutes (leaving her with Daddy and Grandma A) and by the time I walked back in, she was screaming inconsolably. We asked for some benadryl, which didn't do much (at least it didn't put her right to sleep). It took Mommy a half hour or so to get her to quiet down and we played for a few minutes without her continuing to scream. She continued to fuss and not be happy for another hour. She finally fell asleep about 9 pm. It makes for a frazzled Mommy and whoever else is visiting.

About 11 pm, her mesna (the bladder protectant) finished and they got her blood transfusion started. Mommy always worries a little with the blood transfusions, especially after hearing of allergic reactions that other kids have experienced. So Mommy wasn't able to go to sleep right away. Finally about 12:30 am, Mommy was able to lay down and try to sleep.

About 3 am, Rebekah was awake and screaming. The nurse had been in, changing her diaper or finishing the blood transfusion or something and had caused Rebekah to stir. Most of the nurses try really hard not to wake up the kids, but they can't always help it. Mommy had to get up and tuck Rebekah back in and get her to go back to sleep.

Then about 5 am, she woke up again screaming. Once again, Mommy had to tuck her in. This time, we asked for some benadryl to help. We were able to get her tucked back in and back to sleep.

About 6:15 or so, she was up and coughing and agitated and started throwing up. Uugh! I think she emptied her stomach. We had to estimate how much she had lost, so that we could make up for it in replacement fluids. Meanwhile, she needed new jammies, new diaper, new blankets and pads, etc... Not exactly the way, I wanted to spend my early morning. And of course, she thought that she wanted to go "out" of her room in the wagon. Once again, Mommy had to convince her that she wanted to go back to sleep.

Around 8 am, the nurse was in to do vitals and change her diaper - which she slept through. Yeah! About 9 am, Mommy finally got up and started her day. Rebekah continued to sleep for another hour or so.

Chemo, which was supposed to be started about 9 am this morning didn't get up from pharmacy until 11 am. Since it started yesterday at 11 am, we weren't really "late", but still later than it was supposed to be. We have to wait for at least 24 hours after chemo is started before we can head home. This week, that isn't a big deal, but there are other times that it can be a bigger deal.

Thursday Update

It has been a long day. Rebekah, once again, was awake early this morning - about 5 am. She wanted medicine for her owies and to go byebye in her wagon. She got the medicine, but was told it was still nightnight time and needed to go back to sleep. She didn't fuss too much and did fall back asleep and woke up again about 9 am.

Once she was awake, she wanted out of her room. I explained that Mommy needed to eat something and get dressed and then we needed to get Rebekah changed and the wagon cleaned out (it was mounded with toys and things) and then we could go. We put on Dora and she sat mostly patiently. Once I ate, I had to explain the remaining things that needed done before we could go. And so it went, but she kept asking and wasn't screaming.

We headed out for a wagon ride. All day long, she wanted to go out in her wagon. She was not at all happy when we needed to be in her room. By this evening, we had run the battery down to where it was beeping and needed to be plugged in.

The results from her stool sample were back and no c.diff. So that is good. Her blood counts showed a very low hemoglobin count, so she needs a red blood transfusion. They will start it here in the next little bit. They needed to wait until her chemo was complete and the bladder protectant iv completed (which is just about done - it runs for 10 hours).

Mid-afternoon today, we came back into the room. I don't remember why, but before we could head out again, I told Rebekah that I needed to make one phone call. She was sitting in the wagon waiting. By the time I finished the phone call (which wasn't much more than 5 minutes), she was sound asleep.



There are so many programs here to keep the kid's minds off of the treatment. One of those is the Music Rx program. They will check out instruments to the kids for them to play. Rebekah checked out a keyboard earlier this week and has enjoyed playing it off and on.



We haven't had many comments today. Where has everyone gone? We've checked several times today to see who had commented and what had been said and haven't seen much. It is always a big encouragement to see comments and know that people care. Sometimes that is the only way that I (Mommy) know people care. It has been kind of a lonely day.

Grandma A came by this evening to hang out with Rebekah, so that Mommy and Daddy could eat together in the trailer. That was great! Thanks Grandma A! Grandma C stopped by a couple of times and brought Mommy some lunch. That was great, too. Daddy had some visitors, too, including Caron who brought us some chocolate - always appreciated.

Wednesday Evening

Sarah, Debbie and Kelsey came by and brought Mom and Dad some dinner (which was yummy). Rebekah wanted to go for a ride in the wagon with her sister. Sarah sat with her for quite a while, but did get rather squirmy.

Janine from Physical Therapy wanted to know if she could work with Rebekah. I suggested that she see if Rebekah wanted to pull Sarah around in the wagon which would allow her to spend time with her sister and get some Physical work. That lasted for a little while and Sarah got too wiggly. Janine continued to work with Rebekah, walking around, pulling the wagon or pushing the wagon all the while walking with Sarah, Kelsey, Debbie and Mommy close by and Daddy popping in now and then.

About the time we were heading back to the room because Rebekah was getting pretty worn out, the Art Therapist came looking for her. We headed right back to the room and took a few minutes to get situated and then she got to do some art. Rebekah decided that her artwork this time was for her sister, so Sarah took it back to Debbie's with her.

By the end of Art time, Rebekah was getting pretty tired and acting up. She was not listening to the Art Therapist or Mom or Dad and putting things into her mouth like markers without the cap (now she had a blue tongue). Daddy explained to her that she lost the markers because she was not obeying and he took them away from her. The Art Therapist was seeing that it was about time to go, as Rebekah wasn't being cooperative.

Sometimes I think that Rebekah figures she can get away with anything while she's in the hospital (and most of the time at home) just because she doesn't feel well. Not at all the case. She may get a little leeway, but she still needs to listen and obey. In many ways, we know that she needs the discipline - it is afterall a form of love - and she needs to know where the boundaries are.

That started the crabbies for the evening. She complained that she had owies in her mouth. It hadn't been long enough since she had benadryl or tylenol, so she couldn't have those but we were able to give her some morphine - hoping it would help with the owies and maybe put her to sleep. It seemed to do both. She slept for a short while and then woke up very agitated. I asked for some ativan for her to help calm her down. She really wanted it in her mouth, but since it is a pill that is disolved in water and wouldn't taste very well, we put it into her gtube which she fought - kicking her feet and hitting with her hands. Not a very pretty sight.

Then a little later, she was coughing and then throwing up. Uugh! Since she hadn't been having vomiting sessions, Mom didn't have all the supplies ready and had to call for the nurse to help. Nurse Betsy and Nurse Heather came in to help. It wasn't too bad as the only things that needed changed were Rebekah's clothes, the pad on the bed and one pillow case. It could have been much worse, but it still wasn't any fun and it is not good to see a kiddo not feeling well.

A little while later, she was coughing and throwing up again. This time it did not appear that there was much of anything left in her stomach. Because she had been throwing up, she needed to get "Replacement Fluids" - IV Fluids in the volume that was estimated to have been lost. I always find it humorous - if she doesn't take enough in to meet her RDA then nothing is done, but if she takes something in and it doesn't stay down (or maybe I should say in - since it never really went "down" in the first place) then it has to be "replaced". Go figure.

With the volume of fluids that she is getting (IV fluids and GTube nutrition), she is looking a little puffy.

She is such a tired little girl, but she is fighting sleep once again. At this point, today, I'm thinking that there were perhaps a few too many activities and a little too much excitement for the day. She is overly tired and fighting against sleep. Mom let her play quietly in her bed for a while, until she really started to be getting upset unnecessarily. That is when it came to an end.

Now, she is laying in bed screaming. It would appear that she will need to scream herself to sleep tonight. She did just get some morphine to help with the pain and hopefully help with sleep. The benadryl and tylenol she got a couple hours ago didn't seem to put her to sleep. We shall see. She is telling Mommy that Mommy needs to go nightnight "on a pillow", too.

As frustrating as it can be to see her "acting out", there is a blessing in it - she feels up to "acting out" and that can be typical 3 year old behavior. Like I have said before, we have to find some good in each day - it may be a smile, acting out, an act of love or a poopy diaper when there haven't been any for a while. There are always blessings, sometimes they just take quite a bit to see. I thank God for each little blessing.

Several people have asked me today how I'm doing. My answer has been "I'm hanging in there. I'm tired, achy, crabby and we're in the hospital." Nonetheless, God is Good and I haven't lost too much sanity today, yet... Rebekah is still awake and there are almost two more hours in this day. Who knows how they will go.

New to Some, A Reminder to Others

Some of the newer readers to RebekahsPage may not know that there is a companion site to this blog, www.HelpRebekah.com.  This blog as set up to keep people up to date with what is going on in our journey.  www.HelpRebekah.com was set up to answer the question “How Can I Help?”  You can always get there by clicking the “How Can I Help” box to the right.  There you will find updated needs, some photos, news articles about Rebekah (a new section!) and, most important to us, a gratitude list that makes a small stab at thanking just a few of the many many people that have been so helpful to us.  Please, check it out.

Wednesday Mid Day

Last night, Rebekah fell asleep about 8:45 (quite a bit earlier than the night before but still later than her usual bedtime). Mommy finally got to bed a little before 11 pm. At 2 am or so, the IV was beeping and needed attention waking Mommy up to silence the machine and let the nurse know. Then again at about 3 am, it was beeping again... Mommy drug herself out of bed and found Rebekah's nurse once again. Uugh!

Then at about 6 am, Rebekah woke up and wanted medicine for her owies, so I checked with the nurse to see if she could have some benadryl and/or tylenol. She could have both, so I asked for both. Once I got back to the room, she wanted to go for a ride in the wagon. Remember, it is 6am. Others are trying to sleep, as I wanted to. I explained to her (guess how well that went) that it was still nightnight time and we all needed to sleep some more. Then she wanted her diaper changed. Another delay tactic, mom was sure. Mom changed her diaper, anyway, and it surely needed it as it was poopy. After a few minutes, the explanation (and more likely the benadryl) set in and she was back to sleep. She was still sleeping at 10:30 this morning.

Since then, we have had Speech Therapy in (twice since she wasn't able to stay long the first time) and Occupational Therapy, as well as Grandma C, Grandpa, and Daddy. Sarah and Debbie and Kelsey are due in a little while.

Rebekah drew Daddy another picture this morning and it is hanging up in her room right now until Daddy gets it.

Since Rebekah is continuing to have diarrhea issues, we sent a sample away for testing to make sure that we don't still have the C.Diff that we had last hospital stay.

Meanwhile, Rebekah seems to have more of her spunk back and she is trying to use more words. Her vocabulary seems to have increased in the last week or so, which is good to see. She does seem like she's feeling better than she has in months. We know that this round of chemo will knock her down, but it is a lot better to see her starting from a more "up" position.

An Emotionally Exhausting Day

It has truly been an exhausting day in so many ways. Maggie May's service being a big part of that with all the emotions, thoughts, concerns, prayers that go along with it. I (Mommy) am just emotionally and physically drained tonight.

Rebekah has been very insistent that she wanted to go bye bye from her room much of the day, either in a stroller or wagon and for the most part we have obliged her in that. She has gotten very upset any time that she was brought back into her room. Tonight, she was very agitated when we came back to the room. She needed a diaper change and some medications (including Benadryl and Tylenol) as well as a complete set of vitals. She was clearly unhappy - screaming and arching her back and throwing a pretty good temper tantrum. It was clear to Mommy that she a big part of the grumpies was that she was tired, so Mommy put her into bed (despite her objections). She wanted cold water and she wanted to do it herself, so Grandma M went to get ice "in a bowl" for Rebekah (so that Rebekah could put the ice into her cup). By the time Grandma M got back, Rebekah was asleep.

She has been entertained by many today - Brandy, Karen and Ian, Speech Therapy, Physical Therapy, Occupational Therapy, Art Therapy (that is new to her and she seemed to enjoy it), Music Rx (who brought in a keyboard for her to play and checked it out to her so she can continue to play with it), Josh and his parents, Grandma C (who stopped by for a little while this morning) and Grandma M (who stopped by after work). There may have been more, but that is all that I can think of right now.

My mind is working overtime today. Thinking of Rebekah, of Maggie and her family and all of her care-givers and friends and those who hold Maggie dear, of Josh and his family, of Gage and Oliver and Kennedy and all the other kids that we have come to know throughout this process.

And then, there is a new family - another little girl, just diagnosed this week with leukemia. They sure need prayer. For them, it has been a whirlwind few days and it is still new, raw, scary, tearful, etc... There are so many emotions that go along with a cancer diagnosis and perhaps more when it is a child who has been diagnosed.

Thank you so much for your continued prayers and support - it keeps us going.

An Emotion Filled Day - Daddy's Perspective

Thank you so much to Brandy and Karen and Ian for coming and staying with Rebekah.  She is doing so well with all the attention, getting wagon rides, enjoying company, etc.  Unfortunately we are pumping her so full of lots of bad stuff!  We just spent a little bit of time talking with Josh’s mom and it is tough what we have to do to these little kiddos to make them better.  Speaking of which, Josh looks really good.

Maggie’s service was beautiful.  There are so many emotions going through my head that I don’t exactly know what to write, and one of the emotions is that it is not appropriate for me to write much so I won’t, at least not here.  My heart is flooding with things I want to put on paper (or the screen) but I just don’t know when and where it will/should go.  When we left the service mommy wanted to go buy some “pretend makeup” to go in Rebekah’s empty purse.  The last time Maggie spoke with Rebekah Maggie told Rebekah she needed “pretend makeup” for her purse and, when her hair grows back a “pretend curling iron.”  Yes Maggie, Rebekah will hopefully get those things.  Let me finish this subject for now with the finishing thought from her funeral.  This life was unexpectedly short.  No matter how old someone is when they leave us, that is always true.  In this case it is truer than others.