Don't know what to say...

So many of you have commented about how Rebekah’s blog has caused you to look harder at your own life and to realize what things are important and what are not.  Some have said that they feel bad for worrying about the petty things in their life.  Well, that is how we feel right now.  We feel bad for worrying about Rebekah’s petty breathing problems, her petty Pneumonia and her petty cancer.  Our prayers are with you Maggie.  

Rebekah has changed little today – which is a good thing.  Her breathing is improving a bit and they have taken her off one of the antibiotics.  Mommy says she seems like she is feeling a bit better even though she has slept most of the day.  

Last night during movie night we got some candy that is still left – some sour gummy things.  When daddy came in Rebekah was playing with them and wanted daddy to eat one.  She then actually tried to eat one herself.  This is the first time she has tried to eat anything in over a week.  As soon as the sugar was off it came out REAL fast.  If that is her only memory of food it might be a while before she tries to eat again.

And to add more, Grandma called and Rebekah wanted to speak with her.  She actually had a good conversation and then talked with Sarah.  I could hear Sarah babbling in the background and Rebekah say “Chi Chi Chi Chi”.   Their sisterly love IS extremely powerful.  

We still don’t know any more about going home but at least it “appears” that we have stopped the down hill slide and maybe turned around a bit.

PLEASE CONTINUE TO SHARE!  We feel bad about complaining about anything but the hit counts are way down (although up from a few weeks ago) and that seems a bit depressing.

Dear Maggie

Mommy and daddy are kind of in shock right now.  Rebekah is doing fine, or at least there has not been any change with her.  Without any promises they are expecting that we might be able to go home by Friday.

One of the things, for good or bad, that happens when you are here is that you become close to other families with kiddos who are not well.  Even though we have not officially met her or her parents, we have become very close to Maggie.  She has a very rare form of leukemia and was recently (6 weeks or so?) moved out of our hospital to another for a transplant.  We were all OVERJOYED at her success – until this week.  We just received a phone call that Maggie’s leukemia is back, her transplant has been rejected.  She has not been given very long to live (very short in fact).  We are devastated at this news and on our knees in prayer for her and her family.  Please join us.  http://www.CureMaggie.com    


There is a long story behind this song. It is a "cousin" to Rebekah's Bedside as they were written the same night after experiencing the same events. Until hearing the news about Maggie I have not been able to even listen to it.  But now I needed to. Here it is, taken from Steve. This is for you Maggie, Beth, Rick and Angie:


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Another Morning

Rebekah's fever continued throughout the evening and she was up at 4am and did not go back to sleep. Therefore mommy was also up and did not get back to sleep.

Radiation went well this morning and Rebekah is calm after coming back. The radiation doctor said that it looks like she is getting some good healing in her throat. We are pretty sure that we know where the healing is coming from. It seems baby Sarah is gifted with the power of healing:



This picture was taken Saturday during one of our cherished visits by Sarah and whoever is babysitting her at the time. Last night Grandma A brought Sarah by after dinner. Rebekah had not done anything except fight against things all day until Sarah came in. Sarah has leared to wave and when we told her to say "hi" to Rebekah she started waiving and then Rebekah pulled her hand out from under her blanket and waved back. Shortly there after everyone was leaving for the night and Rebekah put her hand on daddy's face to say 'night night' and, in the faintest whisper through her hoarse throat said, "I Wuv You".

We are frustrated with 10 days+ in the hospital but moments like the above give us the strength to go one more day.

Bad News Strikes Again

We are sorry for no updates throughout the day.  It has been a very frustrating day.  

Rebekah went down for a CT Scan because they thought that a chest xray was not going to be detailed enough.  The good thing is that she was actually able to have the 5 second scan with mommy by her side and not have to need a generally anesthetic like she has for every other CT Scan.

The bad thing, however, are the results.  Rebekah has pneumonia in one lung.  They are waiting right now for her next batch of morphine so they can then put a tube up her nose and down her throat in order to get “a deep culture” to find out what kind and what to do to treat it.  They will immediately after that start her on some antibiotics.  They can’t start them until after the culture.  Then, when the culture comes back tomorrow morning they will hope that the antibiotics that they started her on were the right ones.

We feel so much for this little girl.  We know that _we_ just want to go home but cannot imagine how much she wants to.  And at this point they cannot even give us a best guess as to when we might get out of here.  

Mommy is running out of clothes and the trailer and daddy are running out of just about everything INCLUDING food and water.  Since we already had a double triple ugh I guess this one needs to be a quadruple UGH UGH UGH UGH!  

Update- 6:32pm.  Well wasn’t that an experience.  Tiny lubricated tube up the nose and ½ down the throat – just enough to trigger her gag reflex so she would cough and the tube could go into the lungs.  Sucky sucky and up comes the culture.  And then UP COMES BREAKFAST LUNCH AND DINNER.  It was hilarious to watch nurse Stephanie trying to suck up pints of “stuff” with a tiny suction catheter as daddy was grabbing for towels and lots of them.  Rebekah is no clean, has new sheets and is sleeping in mom’s arms in the rocker.  

And because tonight is “video night” I will put in a plug for Hollywood Video.  They have donated a movie room and a couple of times a week come around and show a video and provide pop, popcorn and candy to all of the kiddos and their families.  Next time you have choice of where to rent please go to Hollywood and thank them for their donations – when you are stuck in here it is a HUGE thing to look forward to.  In fact, much of the candy and popcorn is donated by their own “guests” or customers – ask them how you can donate.      

Double and Triple Ugh

11:35.  Just talked with the doctor.  Things are not looking good for getting out of here.  Now they are saying at least tomorrow if not later.  Double Triple Ugh.    Thank you all for the continued uplifting!   And for Jemmers: !!!!!!!!!!!!!!!!!!!

More Stumbling Blocks

She is having more trouble breathing this morning than she has. I would describe it as "labored". Her oxygen saturation is staying OK as long as we have oxygen blowing by her face.

The doctors and nurses are having a difficult time hearing how her lungs are doing because of all the crud at the top of her airway. Instead of doing a chest xray, they have decided that they want a chest ct. Which means another anesthesia. It looks like that is scheduled for 1pm.

Maybe while she is asleep (under anesthetic), they can suction more of the crud out. They did get some of it this morning.

What does all this mean for when we might go home? Who knows!

OOPS

Now I went and did it. Don't know what was here but I accidently over-wrote it. Please read either side of this post to try and figure it out if its important to you.

Emergency Fever

12:45am.  Rebekah has a fever.  103.  Although this is not super high for a regular kido this is critical for a chemo patient.  They are drawing more cultures in blood and urine.  Please be praying for some resolution here.  This may be what has been causing her to be irritable earlier.  

And to top it all off Blogger is down.  We TOTALLY feel stranded!  Will publish this when we can.

Late into the Evening

9:45pm.  I don’t know how to categorize today.  Rebekah is looking SO much better but there are still some signs that worry us.  She is still combative  at times and we don’t know for sure what the source of the irritation is.  She is clearly not happy but we don’t know whether it is pain or, as the doctors call it, hospital psychosis.  Hospital Psychosis is where you have been looking at cream color sterile walls for so long that your mind goes numb.  It very well could be.

We thought looking at her in such “bad” condition was difficult but it really is more difficult trying to hold her, or hold her down, when she is fighting something.  Do we give more medicine or take her off some?  We just don’t know.

There are many many things that have to get done before we can go home – maybe tomorrow.  We want it to be tomorrow, but then again we don’t.  If we do get to go home tomorrow it won’t be till the evening and then we will have to be back here at 6am and, as she is having problems coming out of the anesthetic, we will have to stay until about noon.  It almost seems easier to stay tomorrow night and then go home at noon on Wednesday.  But we want to go home?!?!?!?

This is the first time we have had to be at the hospital without baby Sarah.  It is really tough.  It is tough not seeing your baby girl every day.  It is also tough finding a place for baby girl to stay.  Thank you SO much to aunt TT and Grandma A for taking care of her today and tomorrow.  Thank you to Grandma/Grandpa and to Grandma M for taking care of her this weekend.  At this point I think we almost need childcare through the rest of the week and I just don’t know where to find that.  One day at a time and He will provide it – I hope and pray.

Just because I am enjoying it right now, my first real meal of the day, I want to again thank Jessica Deboer for the wonderful home made burritos she made us.  

And for those of you that have ordered but not received your bracelets yet, they are coming.  We just got a few envelopes back in the mail saying they needed more postage - $.12 more????  I thought an extra ounce was $.23  Is there an oversize change of $.12 that I don’t know about – how can it only be $.12 ???????  Have a good night.

Mid Afternoon Update

2:oopm.  Rebekah is still mostly sleeping from the anesthesia this morning and probably a lot from being worn out from our little jaunt outside yesterday.  

Chemo is still not running which starts to put into question our ability to leave tomorrow.  We need at least 24 hours from the start of chemo to be able to leave.  She had a fever this morning and at lunch and that could have something to do with the time things are getting started.  Right now we are running additional fluids through her to try and get the specific gravity of her urine to a point where we can start chemo (another requirement along with blood counts, no fever, etc...)

Rebekah still seems to be digesting her food at a decent rate and she has gained weight - nearly a full kilo - from our admittance last Monday.  She is now back at 14.6k (32 pounds).  When we started this in April she was 16.1k (35.5 pounds).

Daddy came over to the room at lunch time and mommy and Rebekah were both sleeping.  That was a good thing except daddy did not get to love on either of them.  Oh well, he will have to come back for some later.  

Thank you again for the kind words and encouragement.    

The Week Has Begun

Up at 5 something and packed Rebekah into the stroller to go across campus for radiation treatment. Rebekah was very insistent that she did NOT want to leave the room this morning. We don't think that it was to go to radiation specifically, just that she wanted to stay in bed and go "night night".

Once in the radiation building she did not fight things and was ok with the anesthesiologist picking her up. Radiation went fairly well and we talked with the radiation doctor about potentially stopping radiation after this week. Maybe some more detailed discussion on this later but the condensed version is that she will have the a certain level of accumulated radiation that they think might maybe possibly be enough. We are going to have some serious decision making to do here this week.

Rebekah did not come out of anesthesia smoothly and she is still on oxygen to help keep her saturation levels up. We have not started chemo yet this morning. Not exactly sure whether this is related to her saturation levels or what as we have not seen the oncologist yet. Assuming all else stays well the earlier we get it started the earlier we can go home.

On a side note, we REALLY want to thank you all for your prayers, support and words of encouragement. Even, or especially (not sure which is appropriate) the larger numbers of hit counts on the web site are a big encouragement. Have even had some personal messages and IM chats with some of our new friends. PLEASE don't let it stop. The thought of the momentum slowing down is kind of scarry to us.

Out for a stroll! And Back.

6:51pm What a wonderful treat out. We can't say that Rebekah enjoyed every minute of it but there were moments. We went to Grandma and Grandpa A's house because that is where little Sarah was. Rebekah spent most of the time in mommy's arms just sitting, like she does in the hospital room. There were a few times when she picked up a toy and played with it for a few minutes and even walked around for about 3 minutes. She was quite wobbly but she has not walked any distance at all in almost two weeks. She even wanted another high chair and to sit up next to her sister who was eating dinner. She asked for a bananna but then would not eat it. Here is a picture of one of the few moments she was "back".



On the way back home we stopped at a grocery store for a few supplies (okay - candy) and gave Rebekah the choice as to whether she wanted to come in or stay in her car seat. She wanted to come in but would not go into the seat in the front of the cart. She did, however feel it was her obligation to put whatever we wanted into the basket. Bless her heart, when I asked her to get me a bag of the Reeses Peanut Butter Cups and pointed to them she got THREE bags! I love that little girl!!!!!

We are now back in the hospital and chemo and radiation start up again tomorrow morning. Then maybe, just maybe we can be home late Tuesday.

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1253pm Doc just came in and gave us some very unexpected news - we have a 6 hour pass! He said we will disconnect things and give us enough pain meds so that we can leave for a short period. Now we are totally scrambling. As soon as Rebekah gets up we will go somewhere. She has been pointing to the door and saying "bye bye". When we ask who she wants to leave she keeps pointing to herself and saying "O" which is her name for herself. Updates this evening we hope.

Sunday Morning

One of the first things we did this morning was read through some blog comments and follow some of the contributors. The Other Me wrote this as part of an entry on her own blog. It was so beautiful that we just had to reprint it here:

".....Miracle wish. Oh if I could have a miracle it would be that Rebekah would be well. That her mommy and daddy would wake up and see that this sweet face is healed, that this baby can laugh and yell and shout and be 3, that they could see her have a fantastic 3 year old tantrum and laugh with sheer joy because their baby is well.
That the time we all pray for is here, that Rebekah is healed and well and her parents can take time to see that more than one miracle has happened because as well as being better, this little girl, in her 3 years has made more people see God, turned more hearts to Him in prayer than anyone other one person I can name right now. That when the time comes for Rebekah to be with God ( and may that be so far away that we older people aren't around to see it) He will welcome this child into His arms and tell her that He never left her, that he held her hand and her heart as she battled through this terrible time and turned so many people to Him.
I could live without all the other wishes if I could have the miracle one. In prayer, miracles can, and do, happen, may many continue to pray for this miracle and may we see it soon. God Bless Rebekah, I'm sure He is holding you heart and your hand."

Saturday Update

3:30pm. I just want to fill in a little bit. There is the "unimportant" stuff - Doc has been here and things are going good. Chemo and Radiation are day to day but still scheduled for Monday, which means we will be here through Tuesday at least. Doc doesn't see any more problems that need addressed only curing that means we need to stay the course right where we are.

And then there is the important stuff. For about 15 minutes we had our little girl back. She was playing, yes actually playing in the bed. I was taking a picture of her with a digital camera and she wanted to see the pictures. She started looking through them (new camera that we borrowed from Grandma but Rebekah figured out how to page through them one by one). She kept saying "uh oh" at the ones that showed more of her boo boos. She would not let us take it away from her. She even asked for and let dolly lay down next to her.

That only lasted a short time and she threw the camera across the room, sorry Grandma, and started a fit again but SHE IS IN THERE! When I figure out how I will pull some video of this from my palm and link to it here - keep checking back.

VIDEO HERE (About 1 Meg)

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12:30pm Mommy, daddy and Grandma A are all here with Rebekah this morning. Rebekah had a little bit better night. Her oxygen sats were staying up around 90 most of the time, and recovering pretty quickly when they did drop. Her heart rate has stayed a bit lower as well.

She has also continued to "go" but I promise not to belabor that point any more.

This morning she has actually had a few more lucid moments as Grandma A just said. She has actually asked for her sister "chi chi" and has held and looked at (and crumpled) a picture of her. In addition, she is now actually holding onto a baby doll that the head of the Childrens Cancer Association Chemo Pals program brought to her this morning.

We met with Kate, the "Chemo Pal Gal" and she is going to work on hooking Rebekah up with a Chemo Pal to come see her and spend some time with her when in the hospital. We have known this program was available since April and have been asking for it since then but never followed up until now. We are glad that is getting started as it means one more person to spend some time with Rebekah in the hospital.

I had forgot to mention in yesterday's summary that Rebekah had a blood transfusion. That may be part of the reason that she is feeling just a bit better. It's really hard to look at her right now and say "better" as bad as she looks - but she is better and we are excited about that.

We still have not seen the doctor today and do not exactly know what our schedule is going to look like the next few days to a week. Maybe home, maybe not. Maybe back for Chemo, maybe not. Not knowing is difficult but it is the normal situation for us since April. It is difficult for a control freak (daddy) to live life this way but he is being taught a lot. Trying to plan schedules, especially something for Sarah, is tough under these circumstances. Grandma's (two are teachers) are going back to work and babysitting choices are getting slim.

More to you when we hear more. Thank you for sticking with us.

God DOES Have A Sense Of Humor

I don't want to belabor THE movement any more, you have all been so kind in tolerating and rejoicing with us. I do, however have to share what a sense of humor God has.

While writing that post last night a visitor came to us through a google search. The logs speak for themselves:

Last 20 Keywords:
26/08/2005 22:35:44 "liquid stool softener " (Google)

Friday Final Update (Now known as THE MOVEMENT)

More Than Final Update 10:30pm: After putting up the last update I went back to the room. Allie (see many previous comments) had come to sit with Rebekah and Frances this evening which was a great blessing - especially since she will come back Sunday too!!! Uncle Mark and Aunt Tiffany where also there and brought mommy ice cream which makes them higher in her eyes than daddy - and it was chocolate no less.

After Rebekah had gone to bed peacefully, or so we thought, Allie took off and Mark and TT where just about out the door and Rebekah moved. No, I mean she REALLY MOVED! Everything that had been building up inside her for more than a week and all of the food we have been pumping into the G-Tube for the last three days came out at once and quite explosively. We had always said that the rooms needed a bit more color and apparently Rebekah thought so too. The bed, the walls, the floor, mommy, mark, the nurse Lyndsee were covered. TT and daddy where standing back and daddy literally ran for the door. Out came enough that 5 diapers could not have dreamed of holding it. HOUSEKEEPING TO ROOM 3524 STAT!

I am sorry the picture painted may be gross but it was heaven to us as it means her systems are starting to work again. After we had put the last dose of fiber and colace in her (minutes before) the nurse said "if she is taking all this in it has to come out..." PROPHESY! Rebekah did not like all of the scrubbing up that had to be done but we are so excited about it. We are also very grateful that TT and Mark where there to help as it took all of us plus an extra nurse or two plus housekeeping to get things under control.

Thanks for delighting in the gross with us. It is the weirdest things that give great joy right now.

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7:24pm It is after dinner and I just took a quick trip out to the trailer to try and get an update up. Mommy now has a laptop in the room and has downloaded all of your comments for her to be able to read for some inspiration.

Rebekah continues to not be doing well. She is in the pain med patch and some additional morphine down her G-Tube. Just before dinner she went into a complete hysterical fit and could not be consoled. It might have been another reaction to some Benadryl that had just been given her or it might have been that she was running out/low on pain meds. It's very hard to say for certain.

Her chest xray did not reveal anything in the lungs or lower airway which is good. The trip downstairs seemed to be very soothing to her. She enjoyed being out of the room and moving as much as possible. I say "enjoyed" which is really weird if you saw her as you could only tell she was enjoying it because there was not so much pain in her eyes. In fact we were treated to a few moments of the sparkle that so many of her pictures show.

Her airway and oxygenation issues are still not solved. We are holding off, for now, on a tracheotomy but we are not improving at all. Hopefully another day or two of rest will do a lot.

There are two other Ewing's patients in the hospital right now and each of them is at a different stage. Gage is just a bit behind Rebekah and Joshua is a bit ahead. We don't know a lot about Gage or his family except that we ask that you pray for them in some unsaid needs. Joshua is also in need of some extra prayer as his blog demonstrates. Joshua's blog also addressed a bit about Rebekah today. I know that so many of you are devoting so much to Rebekah but I ask that you at least take a quick look at Joshua's page and add a line to your prayers for each of them tonight - we are.

Sorry, no more pictures today. She hasn't changed from yesterday (which is a GOOD thing!)

Friday Updates

11:30 am. Doctors, nurses, volunteers, aids, and more. Busy morning.

They are going to take Rebekah in for the chest xray to make sure there is nothing blocking her airway that we don't know about. We still believe that the major factor in her oxygenation problem is a swollen airway but there are also other contributing factors. Her red blood cell count is very low and she is in need of a transfusion which will happen today. That might just help her blood carry more oxygen.

We have put a pain killer (Fentanyl again) patch on her back that should give her about the same amount of pain killer she has been getting through the pump. (Did I already talk about this? Maybe, but here goes again anyway). Actually just a little bit less but we have also had the "on demand" button to add as necessary. They are going to try taking the "extra" away and supplementing with liquid morphine down her feeding tube as necessary. This is like we would do at home.

Her tummy tube is showing some concern. After 36 hours of pumping food into her she has not pooped. The first few times we checked her digestive system seemed to be working fine. Now there is some concern that it is not as there is undigested "food" backing up in her stomach. We have had to disconnect the "food" from the tube for right now and see what happens. Right now this is a small concern that could turn into a very major one.

There is some discussion that, if a certain combination of factors play out just right we might be able to go home Sunday. That would be nice in some ways but also not so nice as one of the factors would be that she is too sick for her regularly scheduled chemo on Monday. Another mixed blessing? We are pretty sure that we would rather be well and stay!

Radiation has been cancelled all this week and might start again on Monday but again, that is still up in the air.

You are right in line with us if reading between the lines or your gut impression tells you that, while there are some really positive things happening, overall things are not going well.



10:00am We know many are waiting on pins and needles. And so are we. We just don't know much of anything and are waiting to see how today progresses so we will know:
Are we going home?
Is she getting a tracheotomy?
Does she have an infection?
Will the swelling go down?
Who is available to help if we stay or go?

All that we can say at this point is that the night was difficult with restlessness. Mommy was up most of it and Rebekah is not real comfortable.

I am sorry this is not very much information but imagine how we feel out in the dark too! We will get more up when there is something to tell and we have a moment. PLEASE keep checking.

Some new Links have been added to some of the pages we have found that have posts dedicated to Rebekah and are sending referrals this way. Check them out!

A New Look

Daddy here - I went to bed at midnight and woke up at 6. I waited for nearly an hour before coming to Rebekah's page; not unlike that last present that you just wait to open trying to add to the suspense. When I saw the first comment on the new look I couldn't take it any more.

THANK YOU to Darlene Schacht and Stephanie Fries at www.chameleonblogskins.com for donating the graphic re-do for RebekahsPage. What a beautiful site it is. Now not only our hearts, but our eyes can delight because of Rebekah.

Darlene, a complete stranger to us until this week, has had Rebekah on her heart. Please go check her own blog here and use www.chameleonblogskins.com to give your blog a new look. She has a bunch of beautiful pre-defined templates and will even custom make one for you like she did for Rebekah

Photo Update

Pictures have been updated in the photo album at www.HelpRebekah.com.

I have also made some significant changes over there. Pictures are bigger and should load much MUCH faster. For those of you that even tried downloading from there in the last two days with dial-up - I AM SO SORRY. A wrong setting caused it so you only got to see a thumbnail, but had to download the full size picture to do it. Things have changed and you should actually be able to see them all now.

PLEASE BE FOREWARNED - TODAY'S PICTURE IS VERY DISTURBING TO ME AND I AM USED TO REBEKAH'S CONDITION. IF YOU ARE SQUEEMISH OR VIEWING WITH LITTLE ONES, PLEASE THINK TWICE BEFORE SCROLLING ALL THE WAY TO THE BOTTOM. I wanted to put a pic up on the blog but this one just didn't seem appropriate for here.

Thursday Final Update

This has probably been the hardest evening in my life. I, daddy, went over to Rebekah's room about 5:00 and stayed until about 9:00. I was there through several medicine issues as well as dressing changes which are always horrible. I honestly do not know how mommy stands being there 24 hours a day (Rebekah will NOT let anyone else hold her). I feel really bad saying it but I could not wait to leave. I know mommy feels the same way but she just can't. It is very difficult.

For a while we thought Rebekah was doing better. Then she started down hill this afternoon. She is still not breathing well on her own. It is becoming increasingly clear that it is swelling in her throat, not just "gunk" causing the problem. We had some discussion with the surgeon about putting in a tracheotomy. Yet another tube coming out of yet another hole poked in this poor girls body. The interesting thing is that the surgeon was trying to introduce the idea very slowly and carefully so we didn't panic. Our reaction, however, was just the opposite. We were so afraid the only option to her closing throat was intubation which would commit her to intensive care for the life of the intubation. Compared to that tracheotomy sounds FANTASTIC. Amazing how your perspectives change.

As I said above I was there for a dressing changes. This was critcally timed to match with peak pain meds, sedation meds, etc. Well, anyone who has ever been around a hospital knows that NOTHING happens when it is supposed to. The change ended up being very traumatic. It is so hard to have to watch your little girl scream and yell and thrash in pain, taking two complete adults to hold her arms and legs down while a third ripps off bandages and scrubs very sore skin. It took Rebekah over 30 minutes to calm down after it was all done.

When I left she was restlessly trying to sleep in a worn-out, trauma induced slump - by "she" I mean mommy. Rebekah was pretty much out of it too.

Thursday Updates

2:00pm They have decided not to give Rebekah any more radiation treatments this week. She is just not doing well enough. I think this is a mixed blessing. The radiation treatments are killing her but they are needed to survive. What kind of a world do we live in?!?

Rebekah seems to be doing okay breathing as long as she is sitting fairly upright in mommy's arms. Laying down causes the breathing problems now. They are talking about doing a chest xray just to rule out any problems in the lungs even though everyone if fairly certain from listening to her that her blockage is up in her throat somewhere.

They are also starting to talk about taking her off of the fentanyl (morphine) drip and put a patch on her. The patch will deliver slightly less medicine right into the skin and should be good for 48 hours or so. If necessary we can also supplement that with some liquid medicine into her feeding tube.

She seems to be digesting food through her tube which is a really good thing. Hopefully she will gain some strength through this and we can start to see some of our little girl again.

I also want to take a moment to thank our friend Shawn and all of the ladies at her office. They have had baby Sarah for 2 days now which has been a big blessing for us. Trying to live out of the hospital room with one sick one is bad enough - then add a walking and curious 11 month old and you have a recipe for disaster.


8:30am Rebekah did not have a very good night (which means neither did mommy). We are still having airway issues and her breathing is just not sufficient to keep enough oxygen in her blood. Her lungs are dry (a good thing) but there is some blockage in her upper airway. We do not know whether a good suction would remove it or whether it is more swelling, scabbing, etc.

Right now she really needs some oxygen blowing by her face to keep enough oxygen in her blood stream. With little kidos you take a small dixie cup and place an oxygen tube through the bottom so the cup kind of funnels the oxygen toward their face. Unfortunately Rebekah is not at all happy about this cup in or around her face and keeps ripping it away.

We still have no news back on the cultures for infection.

In trying to treat all of these "side effects" of the treatment we have started in a dog-chasing-his-tail problem. Now we are chasing side effects of medinces with more medicines which have their own side effects.

Ugh.

On a good note - a few more photos are up on www.HelpRebekah.com. Thank you for enjoying them.

What a Day

First please let us thank you all for the kind words, prayers, support, etc. Thank you for buying the bracelets and thank you for your donations. You have all really helped us get through "one more day" and that is all we can ask.

Mommy spent the entire day sitting on a rocking chair with Rebekah flopped out like a rag doll on her lap. Rebekah looked quite uncomfortable with her body flopping one way and her head the other, but I guess with enough pain medicine in you all you feel is mommy. Mommy went through 6 or 7 t shirts with the drool and blood that is contantly coming out of Rebekah's mouth and soaking through the towels that we try and constantly keep on her. When she is awake she is flailing around and it takes 3-4 hands to hold her down.

Rebekah had blood and urine collected to try and grow cultures and try and figure out what is causing her high heart rate and high temperature. We won't have answers back from those for 24-48 hours.

Rebekah started getting liquid nutrition through her G-Tube and that seems to be going pretty well. She is digesting it (don't ask how you test for this!) and is even taking some medicines that way as well. We start with some really high calorie and high fiber "food" to try and get her "Gut" working again. When we get to change diapers that actually have something in them again we know it is working.

Finally we are dealing with some breathing issues. It seems, possibly because of the pain meds, that Rebekah sometimes "forgets" to breath when she is sleeping and her pulseox (a measure of the amount of oxygen in her blood) drops into the 70's. We have seen as low as the 60's. When that happens her heart rate goes up (over 200 now) to try and get more oxygen to the body. Usually a little stimulation on her temple is enough to get things going again.

Having said all of that, Rebekah is doing really good. I know that seems odd after reading all of the above but considering where we were 24-36 hours ago we are really excited. When you are around sick kidos for a while you get a feeling that you have to go by as to how they really are. In medical charting terms we would call it an "initial impression". And Rebekah's initial impression to us is much much better. Basically she is better because she isn't any worse!

Her radiation burns don't seem quite as bad as they are not constantly bleeding. She has some restrictions in her upper airway but she is trying to cough through it. And even though her left eye is pretty much out of service by the radiation, her right eye is starting to get some of that gleem in it that one of you commented on. This evening I had a very small, very short glimpse of my little girl again - something I have not seen for several days.

Mommy and daddy are beat, devastated and worn out - but gaining some hope that we thought was lost.

PLEASE keep sharing Rebekah with everyone you know. I know we repeat this, but we are inspired by your presence on the blog. Keep Rebekah in your thoughts and prayers and ask God what it is that you are supposed to be learning by being here.

New Photos

We have been working on the Photo Album at www.HelpRebekah.com. If you would like to see some "nicer" pictures of Rebekah head on over there. The "regular photo pages" are just thrown up and need some work. The "Photo Timeline of Rebekah's Life" is new today.

Wednesday Update

As I was typing about being blessed mommy called. Rebekah had a rough night and they are not sure why. Her pulse is tachacardic (fast) sometimes as fast 180-200 beats per minte. They are looking for causes and right now they do not know why?

The pain medicines will often have the side effect of depressing or slowing the heart rate and this could be Rebekah's body trying to counteract that. At this point they are giving her more pain medicine to see what that does.

I guess this is one step forward and two steps back?

11:00am UPDATE: Rebekah's heart rate still continues high. She also has a pretty high fever and they are sure there is an infection somewhere. They have taken cultures and we don't have the results back yet so we do not know what to do to treat this.

They were able to give her some Tylenol down her feeding tube but that is it so far.

Based on her condition Radiation was again cancelled today. We can't go too many more days without everything we have done being for nothing. Last night we had a pretty frank discussion with the radiation oncologist about discontinuing treatment. We are being advised against such a decision on every front. So far we have heard what they have to say, had some time overnight to absorb it but have not talked between ourselves so I cannot say that there have been any decisisons reached.

Thank you for your continuing support - it is very uplifting.

We Are Blessed...

...by many things. I left Rebekah's room last night and came back to the trailer in the hospital parking lot as she was sleeping pretty soundly in mommy's arms. She did not look good but she was asleep.

When I got back here I started looking at the comments you all have left and was greatly encouraged. Most of all I kept going back to Steve's music at jubalingen.blogspot.com. It was soothing to me and I even had a quick email chat with Steve.

This morning was kind of rough for me and right when I needed it this song came up on shuffle on the disk I burned last night. It is another one of Steve's:


Powered by Castpost

I hope it blesses you too.

A Little Bit Calmer

Thank you Steve for being able to get a quick update up for us. There are so many of you that are checking regularly that I want to keep updates as soon as possible.

Rebekah is doing better right now. Basically that means she is out of surgery and is so heavily medicated that she is pretty much just laying there. Right now we are trying to walk a fine line between keeping her as pain free as possible but not depressing her respiratory system. Finding out where this line is is difficult because of the anesthetic from this mornings surgery.

She went in for surgery to put in a G-Tube. The surgery requires that she have enough anesthetic to control the muscle reactions in the stomach area which is also enough to affect her breathing. Although Rebekah stopped breathing and could not continue on her own the anesthesiologist was able to keep breathing for her at a safe level.

Her airway (mouth and throat) are so full of sores and ulcers that even touching her face with the breathing mask was causing bleeding. A tube in her throat would cause even more and once inserted would not be able to be removed until the bleeding and ulcers were gone thereby committing her to a ventilator and the ICU for an unknown period of time.

We are right now trying to deal with what we should do if she again gets to the point of needing intubated. These are the most difficult choices you could ever make for someone and definately not choices that a parent ever wants to be facing for their child.

Although we have known all the way from her first diagnosis that this could kill her eventually, today as the first time that I have ever had to look into her eyes and believe that it could be today. It took me sevearal hours to come to that conclusion but that is what we are/were (I am not sure what is the right word) seeing.

Right now visitors are kind of difficult so please keep up the support in other ways.

EMERGENCY UPDATE!

I just received a call from Scott from the hospital. Rebekah has been in surgery all morning and is "Not doing well at all". The time is 12:10 PST.

I am heading over to the hospital at this time, and will add more as I learn what is going on. In the meantime let us all get on our knees and pray to our almighty God for support for the Adams. More to come... Steve Johnson

A Fundraising Update

I am sorry - I do not have a Rebekah update as I have not heard from the hospital room yet this morning and I don't dare call over there just in case they are actually resting.

Mike and Mari, and then Carol's comments on the last post reminded me I needed to put this up here as well. For people in the Portland area, Pepper's Mexican Resturant at the corner of 10th and Baseline in Hillsboro is helping raise some money for Rebekah's trust.

From Thursday August 25th through Sunday August 28th they will donate 1/2 of the proceeds of any purchase of "tacos" to Rebekah. Make sure you let them know why you are there! They have also changed all of their print and radio advertising this week to include information about Rebekah! Thank you Enrique, Pablo and everyone at Pepper's!!!!!

In case you are wondering about their food I should let you know that I took a client there. The client is from Southern California, is 100% hispanic and was adopting a hispanic baby. He said he normally doesn't eat at Mexican resturants because his grandma was such a good cook that nothing compares. When we walked out after he had several different dishes he commented "don't tell, but that was BETTER than abuela (grandma) makes..."

3rd Post In A Day...

...you guys sure have us inspired! We have not seen hits like today ever before and I must tell you it is very uplifting.

Warning - this is going to ramble a bit. We are REALLY tired right now.

Rebekah is finally calmed down. The truth be known, Rebekah is drugged down. But based on how she was acting all day this is the first "rest" she has had in a long time. She has been given a BUNCH of different drugs that each act on a different part of her body to help her calm down and help the pain go away. When she wakes out of her slumber she is fighting, hitting herself, hitting mommy or daddy or whoever else is around. But then when she goes back to sleep she looks so peaceful.

There is no chance of getting anything down throat now and the we are scheduled for a g-tube to be put into her tummy sometime tomorrow. The TPN was providing some nutrition but not enough. The g-tube will allow some food to be put into her tummy where it and the intestines can work and it can also be used for some medicines that only come in pill form. That will be a full blown invasive surgery sometime tomorrow (Tuesday) afternoon.

We still don't have any better idea (other than "a while") as to how long we might be here. We are pretty much expecting to be here through the beginning of next week. It will be a good chance to see what daddy forgot in trying to pack the trailer today. He had to work a full day and get it all ready - something it was not. Right now he just grabbed everything and things are kind of a mess.

We are crying a lot right now. It is really difficult. I don't know how anyone can help but it is tough seeing your little girl like this. I wanted to post another picture of Rebekah today but frankly it is just too bad.

Grandma M brought Sarah down to the hospital this evening. Sarah walked all around the halls and even up and down an incline - a first. Daddy got to take her to the playroom and play games with her and that was pretty cool.

Most cool of all was when she had to leave. Rebekah was awake and in mommy's arms but being very abusive to herself and to mommy - until Sarah came over to her. Rebekah reached out and signed "nite nite" on Sarah's face and then said the only word's daddy heard her say today (other than "ya" and screaming), she told Sarah "I Love You". We cried.

Short Update

Rebekah is a room that she will likely be in for a while. They have put her on a fentanyl (pain medicine related to morphine) pump that has a constant drip plus a push button for extra bursts of pain med. They are trying to figure out what to do with the sores. She needs a g-tube feeding tube put into her side and, because her other blood counts are still really good, now is the time to do that. They are trying to schedule surgery time for that.

Daddy is madly trying to pack up the house and move to the hospital. We were not planning for a hospital stay for a while and the trailer was not ready. Our bad - we knew better. Grandma's are trying to figure out how to juggle baby Sarah and we have not seen her since Friday which is really difficult. The best that they can say right now is "plan for a long stay." As bad as her condition seemed, this is not something we expected or were ready for.

More later when/if we get situated.

Emergency Admit

Just a quick early morning update. Mommy took Rebekah in for radiation at 6am this morning and they took one look at her and determined "this isn't right." They called over to the hospital and are admitting her to try and figure out how to fix (if possible) her constant bleeding. There will be no radiation until further notice.

I don't know what specifically to ask for. If you were in line to help us out this week please realize that may all be up in the air right now.

Jumping Ahead One Weak - Not For The Faint Of Heart

The previous post was a flash back to last Sunday. Now we are here, in reality.

Rebekah is being given morphine on a regular basis and she is clearly still in a lot of pain. Yesterday we saw a "spurt" of energy in that she actually sat in mommy's arms in the living room with the TV on for a while. It would be nice to say she "Watched" TV but even when Dora was on and daddy tried singing Back Pack Back Pack with her she did not move. Today she didn't have even that kind of energy.

Her mouth is totally covered with sores now and even just putting liquid medicine in by a syringe or a sippy cup causes pretty severe bleeding. Mommy is just about constantly putting special creams on her lips, face, etc. The burning close to her eye is clearly painful to her.

Please pray for the taking away of the side effects as well as for a way to better deal with the pain as we start another round of radiation tomorrow morning at 6am.

On a brighter note. Daddy just got back from a few minutes at "Banks' Days", a community fair and combine derby - yes, a combine smash into and disable the other combine derby of which Jeff Foxworthy would be proud. We sold about 35 bracelets at the couple of booths that were giving some space to a flyer and tub of bracelets for Rebekah. Thank you so much to Mindy and Carrie; Ray and Candy Deeth, Christine, and the Banks Chamber of Commerce; and the Banks High School Cheerleaders for giving some space on their tables to and helping Rebekah. Walking around the fair and seeing Rebekah's "Reach The Day" bracelets on peoples wrists really was heart warming. If you don't have one or know what we are talking about, go to www.HelpRebekah.com!

Here is our little one today during one of her more lucid moments. Maybe its hard for pictures to capture the whole essence of her pain, but this picutre really makes her look a lot better than she seems to mommy and daddy:

Guest Commentator - From a Week ago.

Exactly one week ago today we had our "last" outing with Rebekah. It was the last time she had any energy to be out and about and about the last time she had enough energy to even be up walking. I asked Aunt TT to do a write up about it. Here it is:


Rebekah Being Treated Like A Queen From Aunt TT And Her Cousins Michael And Jacob

Sunday, August 14, 2005

Rebekah and Sarah's cousins, Michael and Jacob Schwander, were celebrating their 2nd birthday. Rebekah and family had come home the day before after having been at the hospital all week so that Rebekah could receive both chemotherapy and radiation. All of the family was exhausted, yet appeared happy to be able to spend some time with friends and family in an environment other than the hospital or their home. Rebekah wore an adorable sun hat and was dressed for outdoor play- something that she and all of us needed. Though most of the time she seemed tired and at times confused, she would whisper her requests or silently scream her dissatisfaction. She appears to have laryngitis- poor girl does not need that at all! Please pray that her voice comes back and that God gives her the ability to communicate her needs and desires.

This party was a BBQ and though Rebekah requested certain foods she would either not touch it or if she did try it the food appeared to hurt her mouth and throat. She has sores that look like blisters that start on her lips and most likely lead into her mouth, throat and I don't know how much further internally they are. However, at one point during the party, her Grandma Betty Adams was able to feed her about at 1/4 cup of homemade pasta salad made by Michael and Jacob's Grandma Violet Schwander. She seemed to really like that! Rebekah requested to be with her "TT" (Aunt Tiffany) several times throughout the party. At one point, she rallied all her strength and determination as she watched Michael and Jacob receive a Radio Flyer Tricylce! She was bound and determined to ride that trike- and she did! The three of them took turns, pushing, pulling and riding! They had a blast at that and there are wonderful photos to share that moment with you. By the end of the night, Rebekah was tired- we were all tired for that matter. Afterall, this outdoor BBQ took place during one of our hottest days yet- 95+ degrees!

As I bring this to a close, I ask that you read a comment that was written by Karen on Tuesday, August 16, 2005:

"karen green said...God please comfort Frances. The past few weeks have been especially hard on her, watching her little girl grow weaker and more frail through the radiation. Lord, please, please protect Rebekah from the damaging effects of the radiation. Please give her what she needs to strengthen and sustain her little body. Lord, please show Rebekah's mommy and daddy the little joys of life that are still right in front of them. Many hugs from Ohio. Karen"

Please join her in her prayer! There is power in numbers and we have seen that already! May God bless each one of you who has helped, prayed and supported our family!

With appreciation,
Rebekah's Aunt Tiffany ("TT")

More on Today

Rebekah has shown bursts of energy today. By energy I mean that she wanted to sit in mom's arms in the living room instead of continuing to lay in her bed. At one point, she sat in mom's arms for about an hour. Another couple of times she sat for a half hour or so. Once, she wanted down so that she could go get her sister's sippy cup for her and she helped mom carry her backpack with her to get it.

We hope that the combination of the TPN (nutrition) and the lack of Radiation on Saturday and Sunday will help her to feel better. Also, we have set up a humidifier in her room to help keep her secretions moist so that hopefully the coughing won't hurt quite so bad.

Another blessing late this week is that the sores on her forehead are healing. She has scratched some of the scabs off (or they have rubbed of when Mom has put ointment on her face) and they are healing instead of being raw again. That is exciting to see. With the difficulty that she has had with the sores scabbing over, it surprised me to see them healing.

Grandma M has spent much of the week with us this past week although she is home for the weekend. It has been a HUGE help to have her home with us. At times, just caring for Rebekah takes two of us. Tonight Grandma A stopped by and picked up Sarah for the weekend. I'm sure they will have lots of fun and then we can focus on Rebekah and hopefully get a little rest. We have tried to keep Sarah close to Rebekah, because they seem to thrive on each other. Right now, with Rebekah sleeping so much and not wanting to do much, we thought it might be ok to have them apart.

Rebekah's weight was up about half a pound since Tuesday. That is with two days of nutrition in her. We are glad it was an increase and not a decrease. She currently gets the TPN (nutrition) for 18 hours each day. We thought that would give her 6 hours to play freely. Since she hasn't been playing, I asked the doctor if there was any reason to up that to 24 hours. She checked and told me that she is getting 100% of the nutrition she needs, so if we increased the time to 24 hours we would decrease the rate. No real reason to do that.

Miss Sarah (at 11 months old) is totally walking. There is no denying it now - Mom and Dad were in denial for quite some time. She will squat down and pick up toys and carry them around. She will change directions without problem. She is also a climber. She will climb up on a stool next to Rebekah's bed and tries to climb onto the bed, but it is just a little too tall for her. She has been known to move things next to the couch to climb on it, too. She doesn't seem to have any fear.

We have had a number of visitors this week and meals brought to us most days. That has been a blessing. It is great to not have to worry about what we will have to eat. Thanks to everyone who has helped with that.

We hope everyone has a good weekend.

Tired, Painful and Breaking our Hearts to Watch

Rebekah continues to not feel well. It just breaks our hearts to see. We have to fight to get her to take any of her meds. It is heart wrenching.

She has mucositis (an inflamation in her mouth) that is currently running all along the edges of the front half of her tongue. It looks pretty gross and I'm sure doesn't feel well at all. The Radiation Oncologist said to expect it to get worse before it gets better. It is a sloughing off of the dead (Radiation is killing them) skin cells on her tongue and will likely spread to other areas of her mouth.

She is sleeping most of the day. She doesn't have much energy. She spends most of the time in her bed or in Mom or Dad's arms. On our way home from the hospital today (and it was a clinic day, so we didn't get out of the hospital until after 11:00 am), we stopped at friend Mike and Tara's house to pick up Sarah. They had been watching her. Once we stopped the car, Rebekah wanted her shoes and socks on. Tara came out with Sarah, but Rebekah still wanted to go in. So we went in and saw Emma and Benny (ages 5 and 2) for a little while. She walked part of the way in and once inside walked a little and played for a few minutes. It was great to see her "want" to walk and play. She didn't seem to have much energy for it, but it sure was a delight to see her "want" it. We have to recognize the little blessings like that each day.

Rebekah's white blood counts and ANC were starting back up. The doctor wants us to give two (Friday night and Saturday night) and maybe three (Sunday night, too) more GCSF shots. She asked that we call her over the weekend to decide whether Rebekah should get a shot Sunday. Her platelets were getting low (30x10'3 normal is 140-440x10'3). Doc didn't think she needed platelets unless I wanted to push for them. Since I really hadn't been seeing any bruising, it didn't seem necessary to me.

Dinner is ready, so I'm going to get this posted. Hopefully I will have more time later to write more. Thanks SO MUCH for all the prayers and comments and spreading the word. It is uplifting. I know God is looking after us. We rely on him greatly. I don't know how we would do it without Him.

Update

How's that for a title? I guess I am just not being too creative right now.

Yesterday was a long day, again, in so many ways. Rebekah and mommy were off at 5:00am and home about 8:30am. The anesthesiologist giving Rebekah her general is having problems with maintaining her airway with all the leaking/oozing sores in her mouth and throat (sorry for the picture) and wants the doctor to try giving her some medications that will dry that up. This is difficult because one of the side effects of radiation is burning out the salivary glands so Rebekah already has very little saliva to help swallow and this medicine will likely affect that too.

The home health nurse brought out Rebekah's TPN which is nourishment to be pumped into her central line. The stuff comes premixed in a huge milk bag - 1.3 liters to be exact. Just before use we have to add several other drugs into the bag. She has to have the bag of fluids, a pump about the size of a large digital camera, and the battery about the size of a laptop battery connected to her 19 hours a day. It is in a backpack but, unfortunately for Rebekah and other Dora fans, that BACK PACK BACK PACK is too heavy for Rebekah in her frail state. We are sure hoping it does some good to get her renourished. She was down from 16+ kilos to right at 13.

Rebekah slept most of the day which should be good, except she then could not sleep at night. She didn't want to get up, but she couldn't sleep. Mommy slept in her room to try and help her through the night. Actually slept is not an accurate term in that there was never more than an hour of straight sleep. Mommy is pretty beat down right now.

When I first started to write I was going to say that I wanted to tell you good news but couldn't think of any. That is just not so. Every week, even every day gets harder and harder and we feel like we are at the end of our rope. This week has been the hardest but we have made it through it. Why? Because of you all and prayers and uplifting support.

In addition to a couple of people dropping off some food and offering help (thanks Tami and Fran), this week has had lots LOTS more people on the blog and praying for Rebekah. This is in big part to Steve and his mission to share Rebekah with the world. Seeing the traffic double and having a couple of people order bracelets, make a donation and/or offer help at www.HelpRebekah.com have been HUGE inspirations to us this week. It is amazing the uplift you get to take a moment to put a bracelet in the mail to someone. Anyway, my point is that you all have been the good news and have kept us going. Thank you and PLEASE don't let it drop off!!!!

A Long Week, Already

It has been a long week already and it's only Wednesday. Yesterday was especially long. Rebekah was pretty sleepy before our appointment at clinic. She would doze off and then wake up a little while later kicking and jerking around and screaming and then settle back down and doze off again. After her blood was drawn at clinic, she wanted to be in Mom's arms most of the time. She was very wobbly on her feet. She wanted to drink water from a regular cup, but wasn't doing it very well - she spilled a few times, once all over mom.

When doc came in, he checked her ears first. Rebekah insists that he check her ears first. He has never had a kiddo who actually wanted his/her ears checked always - most of the time they don't want them checked. When he looked in her mouth, he hurt for her. Her mouth is pretty sore - she has quite a few sores (ulcers) on her tongue and throughout her mouth (especially on the left side where the radiation is hitting most). He wanted to know how the morphine was working for her and ordered her some for her while we were there. He said that after looking at how sore her mouth was he HAD to do something for her. He suggested that we keep the morphine scheduled - giving it to her every 4 to 6 hours whether it looks like she needs it or not.

Her Hemoglobin was low enough that he wanted to give her a blood transfusion. That takes at least another 4 or 5 hours. At that point, we knew that Grandma M was going to have to leave home for her appointment before Mom would get home. Dad knew that he could take care of her if he had to. He talked to Grandma A and she came out for a few hours. Sarah slept for part of the time.

We took the paperwork over to "Day Treatment" where they do the transfusions and then went to get something to eat. It wasn't even 11am, yet, but it is tough to get away once started and it takes about an hour or so before the blood comes up from the lab. Rebekah really didn't want to eat and continued with the dozing and then screaming and flailing around cycle. Pastor Dale, who had been trying to make it out to pray with us had talked with Dad about coming to the house in the afternoon, but changed his plans and came down to the hospital instead. His visit was appreciated.

During the transfusion, she spent much of the time resting or snuggling with Mom. She played for a little while, but her energy level was definitely low. She wouldn't eat or drink much either, despite how much Mom tried to get her to eat or drink. She was fighting a sick stomach too.

Grandma C stopped in just as we were getting ready to leave. Rebekah felt so bad that she didn't even want loves from Grandma. That is feeling pretty bad.

Once home, Grandma A was still at our house. She had brought Rebekah some books and Rebekah wanted Mommy to read some of them to her. Despite how tired she seemed to be, her eyes lit up with some of the books and for a few minutes she looked happy and her normal perky self. That quickly faded and we put her down for a nap a little before 5pm.

At 8pm, she was still asleep. We got her meds ready and gave them to her in bed and let her go back to sleep. Sarah went to sleep before 9pm. It was sure nice to have both girls in bed and asleep before 9pm. Mom and Dad were able to get to bed before too late.

She woke up once during the night (a little before 4am) and both Mom and Dad loved on her for a few minutes and she went back to sleep.

Today was a Radiation only day. She wanted to be in Mom's arms or the anesthesiologists arms or the radiation tech's arms. She is still not feeling too well. Mom gave her an anti-nausea med before leaving the house, so that she wouldn't have problems with an upset stomach.

After treatment today, the anesthesiologist mentioned that she may want to prescribe a medication for Rebekah to help dry her mouth up a little (she has too many secretions and she's concerned that it is becoming a problem) that we would give to her before heading to the hospital for radiation. Unfortunately, the radiation can dry her mouth, so there is a little bit of a fine line. She was going to do some checking and decide for sure what to do. We probaly won't have it for tomorrow, but maybe for Friday.

She really didn't want to wake up this morning from the anesthesia. We had to hang out a little longer than usual until the nurse could see some eyes and some purposeful movements. She slept most of the way home and wanted to go to sleep once home. As I type, she is still sleeping.

Also, as I type we have drywall going up in the new room. It is really cool to see. It is looking much more like a REAL room. We are getting more and more excited about it.

Tomorrow morning they will do a cat scan after radiation. We'll have to walk over to the hospital for the scan and it will take a little bit more time than normal but not much more than an extra hour (if even that). The cat scan will be used in preparation for the last 6 radiation treatments which are "boosted" and directed at the area where there was any sign of tumor remaining at the time of the second round of scans (after 9 weeks of treatment).

Thank you for all the prayers and the comments. It is helping and encouraging us.

A Transfusion and Now Home

Rebekah and mommy just got home - almost 12 hours from when they left this morning. Rebekah's blood counts were pretty bad and she needed a transfusion. They have also ordered up the first set of equipment for providing her some nourishment through her central line. More about that later.

This was just taken of Rebekah. I just sent it to a friend of ours who said it was sad to see how sick she looks. Quite a different perspective from mommy and daddy who actually are thinking how great she looks right now, she is actually pinked up quite a bit after her transfusion and, at least to us and in comparison, looking quite spunky.



Thank you so much for your prayers - they have been quite uplifting today and we have really needed them. We have also been SO lifted up through some wonderful groceries from LaDonna and Royal Stearns and from some good news from the financial department at the hospital. It is really amazing to us how little tiny things can pick you up or let you down - we are told that means you are pretty close to the edge. If so, I guess we are sitting on it!

A Hard Morning

Once again, we were up and out the door very early this morning. Rebekah fell back asleep in the car on the way to the hospital. Once at Radiation, she wanted to love on Mommy for a little while before wanting down so she could check out the place.

As we sat in the Radiation Treatment room getting ready to put her to sleep, she started to cough and be sick to her stomach. She didn't get completely sick, but enough that mom worried for her. The anesthesiologist gave her the meds a little more slowly today, just being cautious. After she was asleep and they took her to lie her down, mom left the room in tears and prayed that God would keep her safe. It is just too hard to see.

At this point we are just over half way through radiation treatments - 16 down and 15 to go.

Since today is a clinic day, we get to wait until clinic opens at 9:00 am and then have blood drawn for her counts. Hopefully we can get her started on TPN for nutrition supplementation. I don't even want to know what her weight is this morning. I know it will be down. With as frail as she looks, I'm afraid it will be WAY down.

Rebekah is still dozing right now, so we took a stroll over to one of the hospital wards where there are some computers that we can get out on the web. One of Rebekah's nurses commented that she really didn't look like she was feeling too good. That is probably an understatement. She (the nurse) looked pretty concerned. I will say that the anesthesia hasn't worn off yet, but that is only a small part of why she doesn't look good.

We'll wait a little while and then I'll try to get her to eat something and to take her morning meds. The anesthesia needs to wear off a little first. She said she wanted some juice, but she's dozing again and her juice is just sitting. One step at a time... One minute at a time... One hour at a time... One day at a time... Whatever it takes to make it through.

A very VERY long day

We woke up around 5 and mommy and Rebekah were at the hospital by 6am for radiation. They were home in time for a short nap at 8:00am.

Rebekah said she wanted daddy's eggs - and then wouldn't eat them. Typical. We went through the day with Rebekah wanting something and then not eating it. What she has gotten into her system today is very sparce - 1/4 cup of milk spooned to her from a cereal bowl. 1 teaspoon of ice cream. 3 gold fish. 2 icee pops. The biggest meal of the day has lasted for the last 1 1/2 hours - and we are up to about 40 cherrios. If you do the math it is not very sustaining. This took about 4 to 4 1/2 hours of sitting in the high chair. We started medicines at 6pm and went right into eating and it is now 9pm. (And people wonder why we need help around the house, or help taking care of the girls, or help with laundry, or....) Thank goodness Grandma M was here to help with some of this.

We are at clinic tomorrow for blood work and other exams; I think we will have to start tube feeding.

During medicines Rebekah (or the swabs with medicine on them) kept touching her lips and the skin over the sores kept comming off. We feel like we are experiencing the biblical boils, sores and leopersy all in one. If we weren't so focussed on trying no to freak her out we would be pretty grossed out!

On a very good note we have seen a lot of support today, or at least a lot of people reading the blog which lifts us up quite a bit. I think today is either the highest or the second highest traffic day. It would be a dream come true if EVERY day got as much traffic as today.

We also heard that the drywallers (who didn't come last week while we were in the hospital) should be able to get done part this week and part next week. It will be SO nice to be able to finish that room off.

There are a lot of things in the works to get Rebekah's story out to the public so more and more people can be touched by her and her needs can be made known to more. Please tell everyone you know about this blog and about www.HelpRebekah.com Use the flyer (also linked to the left) if you desire.

Thank you for all of your prayers - they have literally made the difference between us making it through another day or not. Please keep them up.

Tomorrow at 5am begins another day.

Some Good, Some Bad

Rebekah woke up about 9:30 and ate some milk (spooned from her bowl of cinnamon life). She didn't keep her morning medicines down and got very agitated. She had only bites of lunch and went down for a nap about 12:30.

Mom and Sarah went to Mom's Aunt Lucile's 70th birthday party. Lucile seemed to be in good spirits.

When Rebekah woke up from her nap, she wanted Mommy to come and change her and get her up. Since Mommy wasn't home, Daddy told her that she needed to get up and have something to eat and then they could go see Mommy. Mommy and Sarah headed to cousin Michael and Jacob's 2nd birthday party and met up with Daddy and Rebekah there. She got lots of love from Grandma C, Grandma A, Grandpa, Aunt TT, Uncle Mark, Mommy, and Daddy. She really seemed to enjoy the pasta salad and had quite a few bites. She was also doing a pretty good job of drinking water from a sport bottle.

She started to wear down and kept saying she wanted to go night night. We tried to give her some tylenol which she spit right back out. We did give her some Zofran for nausea and vomiting. I figured that by giving it to her before the rest of her meds, she might be able to keep them down better.

Finally, we were ready to head toward home and bed. Once home, she said she wanted to eat and she wanted goldfish. She sat in Sarah's chair, opened her container of fish and put some on her tray. Then she proceeded to throw them on the floor. Mom left her in the chair while giving her the evening meds. She took them pretty well although she was getting sick to her stomach and spit just a little bit up. She is not wanting her teeth brushed. For the last few days, mom has been putting her flouride toothpaste on by finger - and hoping that she doesn't bite.

When we changed her diaper before bed, she had some stool. That is good. It is at least a little bit of a relief. It was pretty firm.

Here it is past 11 pm and Rebekah is awake. She was fussing, although it was hard to hear her with her being so hoarse. Mom took in some water. She has drank quite a bit, but Mom will have to take it away in a few minutes since she can't have anything before anesthesia in the morning.

Rebekah is looking pretty frail. It is obvious that she has lost quite a bit of weight. She has some scratches on her forehead that look pretty bad - her skin seems to be broken pretty easily and then it takes a while to scab up and begin the healing process. She's pretty banged up. Any little scrape or bruise just takes a while to heal and disappear.

The last few days have been really bad. It is taking a toll on Mom and Dad as well as Rebekah. Sarah seems to be mostly unphased by it right now. The next few weeks are going to be really tough. Please Please Please continue to pray for us. Without your prayers, I don't think we would make it. It is only by God's grace that we have made it so far. It is certainly not our own strength.

We are Home

We were able to get out of the hospital Saturday about 1 pm and head for home. Rebekah went right into the kitchen and grabbed the container of Apple Jacks off the counter and wanted into Sarah's chair to eat. She didn't eat much, but she ate some Apple Jacks, some cheese and some veggie crackers.

It sure feels good to be home!

I don't know if we mentioned it or not, but Rebekah seems to be constipated. She hasn't had a bowel movement since we got to the hospital. She hasn't been eating a lot and her belly is still soft and making noises (which are good things). Aside from eating high fiber foods there is not much that we can do for her except to give her some colace liquid stool softener. It doesn't taste very good and can burn her throat some. Friday we tried mixing some with some cocoa powder (doc says chocolate does a good job of masking the flavor) and puting it in a syringe to give to her. She took one taste and didn't want any more. Mom tried to get her to take a little more and most of it came back up - decorating Mom's shirt and pants. Saturday morning, we got some chocolate syrup (from one of the coffee vendors) and tried that but she wouldn't go near it. At home, Mom tried mixing it with some Raspberry syrup but Mom got decorated some more. Please pray for a bowel movement. They can't give her an enema or suppositories, because of the risk for infection. And we can't give her anything through her central line to help, because it wouldn't get into her stomach and intestines that way.

Last night, when we went to give her each of the medications that she needs she fought it very hard. She has been so good about it, until last night. I don't know if she thought she was going to get more of the colace or if her throat was just hurting that much more or what. We just about had to hold her down and force the meds down her. It just breaks my heart. Not only that, but we had to give her a shot, too. Uugh! Many times this week the nurses were amazed at how well she was taking her meds. She would grab the syringes and try to push it in her mouth herself. Not last night!

Friend Dinah came to the hospital to help us get packed up. She was able to help keep Sarah entertained while we got things out to the car, van or trailer. That was great help!

Friend Carol came to the house to help us for several hours. She was able to entertain the girls, pick up a pizza (and some milk) for us, help get some of the things in from the trailer, do some laundry, some cleaning and generally help us relax a little. That was tremendous. She also was able to help with medications.

Friend Tara came and cleaned out the cat boxes and got them food and water and took our pop cans (so she can return them for us). That was very helpful! She has been watching out for the cats while we were away.

Speaking of medications, there are a bunch. This morning Mom had to find a different bag for them - because the bag she was using was too small (after the addition of new medications this week). She moved them to a small diaper bag and they fill the bag. Here is a quick run down: Periactin (antihistimine and appetite stimulant) which she gets twice a day, Septra (antibiotic) which she gets twice a day on Friday, Saturday and Sunday, Zofran (anti-nausea and anti-vomiting) which she takes as needed, Magic Mouthwash (for mouth sores with lidocaine which numbs) which she takes as needed, Peridex (mouthwash for cleansing) four times daily, Tylenol (as neede for pain, but we can't keep her on it because we need to know if she has a fever), Tylenol with Codeine (if we want something a little stronger, but we still have to worry about fever), Morphine (as needed for pain, but she can become tolerant to it and addicted to it), Sodium Flouride Drops (to protect her adult teeth, since we do not have flouride in our drinking water), Flouridex toothpaste (to protect her baby teeth from the radiation) twice daily (she gets it at least once daily) with no food or drink after for 30 minutes, Biafine (ointment for the "sun burn" on her face) up to 3 times daily and then there is her GCSF (Neupogen) shot to increase her blood counts which she takes for 10 days after chemo is done. I think that is it. It is a lot to keep track of.

The girls seem to be enjoying their own beds. They are still asleep and we're going to let them sleep right now. There is no reason that they need to be woken up this morning. This is one of the few days that we can sleep in.

Please pray for a bowel movement, that she would eat more, that she will take her medications well today and that we would all have patience and can get some rest. One of the nurses this week was telling me that we have to remember what is important to the kiddos. What they care about is to know that Mommy and Daddy love them and that they can sit in Mommy's (or Daddy's) lap and snuggle and feel good. Each day is a blessing. God is good.

New Changes To The Blog - Help "Spread The Word"

Ok, daddy needed some mind numbing work after this week.

Please see the column to the left for links to those blogs that have "found" Rebekah as well as links to where you can print a full color poster to keep Rebekah on your mind or share her with others.

Want to help spread the word? How about printing out the 8 1/2 x 11 poster as high of quality as you can (photo papers work great!) and putting it up in your business or asking businesses you frequent to put it up. If you do so, post a comment to let others know what businesses have agreed to spread the word!

No title comes to mind.

Mommy started the night with both girls in the room. That lasted until about 11:30pm when she called daddy asking for help. Sarah was fussing and screaming and Rebekah was being upset, hitting herself and throwing up. Daddy ran over to the room and brought Sarah back to the trailer. From that point both girls did real well through the night.

Rebekah spent most of the morning sick to her tummy. At 11:00am friend Nancy showed up to help take care of the girls and mommy headed straight to the trailer to get a fresh change of clothes. It seems Rebekah didn't think that mommy looked nice in a clean shirt and decorated it for her...

Early this afternoon we all met with the doctor to discuss feeding and nutrition issues. It looks like sometime next week we will probably start Rebekah on some additional nutrition through her central line. This is not as good as through a tube into her tummy (either through her nose or straight through her side) but a lot less invasive. We will see how that goes for a while and then make a decision from there. The nice thing we learned from that conversation was that we don't have to start it today.

The hard to take that we gleaned from the conversation is that this is not to get us through radiation but long term. It is fully expected that when the long term effects of the radiation start taking place Rebekah will not be able to open her jaw or eat enough to survive for a while - and this is the hard part - a while being a year or more. The preparation for us was to expect to have a tube in her side for several years at least. wow.

In addition they have prescribed morphine for the pain. She has not taken it yet and they do want her to take it sometime today to see how she reacts. In just a couple of days we have gone from "no just take tylenol" to them telling us that we should be giving morphine. I don't know what to say except that it is just another example of how things are going.

Sorry if the last couple of postings have not been how great things are going and all up beat. We wish even more than you do that they could be.

Not Getting Any Better

This week is just not getting any better. We have been hoping and praying that Rebekah was going to deal with the radiation better.

If you have been reading the last couple of days you know that Rebekah has been having a hard time with her mouth, throat and sores. Today she had her radiation (a general anesthesia) and then came back up to her room for a few hours and went back down to surgery (another anesthesia) for them to stick a scope down her throat and look to see what is there. The only answer that they have after looking is "this is normal for radiation" and it must be laryngytis which she could have for the rest of radiation (3 1/2 weeks).

It is coming down to us having to make a choice between an IV type feeding tube with a chemical (TPN) that would be constantly fed to her through her central line using a pump that she would have to carry in a back pack about 18 hours a day. The second alternative is a feeding tube down her nose (an NG tube) that we would feed her a nutritional supplement (like Ensure) through regularly. The third alternative is a feeding tube directly into her side (a GT tube) through which we would feed the same type of stuff as the NG tube.

We are going to physically look at all of the options this afternoon or tomorrow. Hopefully we will have a few days to make a choice.

Obviously this is wearing on mommy and daddy and we are both pretty beat down. Pray for a miraculous healing and return of appetite for Rebekah to be able to avoid one of these choices and pray for us to help make the right choice as/if it becomes necessary.

Also we could sure use some help Saturday afternoon and evening at the hospital getting packed up and Saturday night/Sunday at home.

It goes without saying but this is not how you like to see your 3 year old.

Rebekah's Bedside - An Answer to Prayer

WOW, God is good and meet's our needs no matter how trivial they might be. Let me tell you how.

Yesterday afternoon I was looking at Rebekah's Blog wondering how I could add some music to it. I didn't know what I would add, or even if I had anything worth adding. Most of all, I didn't know how to even go about doing it.

Last night I spent the night at Rebekah's Bedside. This is not something that I have gotten to do since the very first night we spent in the hospital back in April. It was absolutely heart-wrenching and difficult. She was up multiple times throughout the night hitting herself and trying to cry (she can't cry with her throat) and trying to scream (she can't scream either) "mommy." All that came out was the most faint whisper that you could barely hear from 5 feet away.

What kept me going, however, was a song that was written and recorded just for Rebekah at her birth 3 1/2 years ago. It is, as only God could have done, fortuitously entitled "Rebekah's Bedside" and is recorded by its artist, Uncle Mark Schwander. It was in my head all night.

Then, when I got back to the trailer this morning I saw that one of our regular visitors, Steve Sporre, had been on Rebekah's Blog and I decided to visit his blog: Jubalingen.Blogspot.com Just yesterday he posted an audio file which showed me how I could post Rebekah's Bedside for all of you to hear. Thank you God for giving me Steve!

Here it is. (If you only have dial-up please decide whether you want to do this or not - it is almost 5 megs in size and may take a while.)


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Still Hurting

Rebekah is still very hoarse. Her throat is definitely hurting her. She didn't eat much again today. For breakfast, she wanted milk poured into her bowl of cheerios and then spooned into her mouth without any cheerios. She drank (or should I say ate) a cup and a half that way. Lunch was one and a half serving size tubs of vanilla ice cream and some bites of tortilla chips & guacamole. Dinner was two serving size tubs of vanilla ice cream. Bed time snack was one tub of vanilla ice cream. Do you see a pattern? The cold of the ice cream must feel good on her throat.

The sores on her lips are looking a little better. Just before bed we noticed that her gums appear to be getting a little sore. We will keep an eye on that and see how it changes. We pushed the oncologist today to have someone look at her throat and vocal cords to see if the soreness is likely radiation related or if it is infection related. He was going to check with the Ear, Nose and Throat doctor who performed the original biopsy and see if he would be willing to come in at the early hour (while she is out at Radiation). According to the nurse, it looks like that is scheduled for tomorrow morning while she is under anesthetic at radiation. It won't take him long to look if she is asleep. She has been running a low-grade fever so we worry a little more about infection - especially since her counts will be dropping.

We have given Rebekah several doses of Tylenol today. Tylenol will help with the pain, but it can also mask a fever. Since identifying if she has an infection (most notably by fever) is very important, we have to be cautious about using it. We asked doc about what we should be using for pain management. He wants to start with Tylenol and move up if necessary. The side effects of some of the other pain meds can be undesireable.

Candlelighters (a support group for families of children with cancer) provided lunch for family of cancer kids who were either in the hospital or at the hospital for appointments. Mom stopped in and got some lunch and saw a couple of people she knew - Jenny Lambert and Fran Hoak - both from Laurel Community Church. Jenny's son battled cancer and she and her husband are very active in Candlelighters - we suspected she might be there. Fran had gotten involved with Candlelighters when Jenny's son was fighting cancer. She was surprised to see us. One of those "it's never good to see someone you know in this situation" moments. It was nice to get a lunch that was different from normal. And Rebekah seemed to enjoy the chips and guacamole - she saw it on mom's plate and made it clear that she wanted it. Mom figured that if she wanted something that much - she could have it. Mom could eat something else. It was a delight to see her want something specific to eat.

Friend Sarah came and helped with both girls all afternoon and evening. She, Mom and Baby Sarah are in the trailer tonight while Dad stays in the room with Rebekah. Katie, Rebekah's nurse for the night, was going to help make it a good night. She has been our nurse the last two nights and we've had her before. She does a great job of keeping quiet when she comes in and is great with Rebekah. Rebekah is in great hands with Dad and Katie. All of the nurses are great about changing diapers - especially the night nurses. So Dad won't have to deal too much with that. Dad will take her down to radiation in the morning, so Mom can sleep in a little (as long as Sarah cooperates).

Grandma C stopped by a couple of times. She brought smiles to the girls faces.

Please pray and pray and pray some more. People ask how we do it and the only answer we have is prayer. It is not our strength, but God's.

A Difficult Day - Radiation Takes Its Toll

This morning came early with having to be at Rebekah's room at 5:45am to get her over to radiation. Grandma A spent the night with Rebekah and they did not get much sleep with Rebekah crying in pain much of the night. They did give some Tylenol which the nurses said helped a bit but Grandma did not seem to think too much.

We were able to disconnect Rebekah's chemo and fluids so we did not have to take an IV pole across the parking lot which is great - sort of. When we got back Rebekah's IV pole (a brand new great rolling one) and been "stolen" by someone else. Fighting for the best equipment is a very small but very real thing around hospitals. Kind of like fighting for the best office supplies when someone leaves their cubicle!

Rebekah's face is totally red, like she has a serious sunburn on one side. The unfortunate thing is that the burn is also on the inside. Her mouth and throat are very very sore and she has not had much more than fluids for a few days. She also cannot speak. It is like she has the worst case of laryngitis that you can imagine. There is nothing more heart wrenching than having her lay on your lap and grab on to you so hard as if she is trying to crawl inside you and then whisper in a very hoarse voice "I love you." It just makes you want to cry SO bad.

When things are bad the little things that people have done to help seem even better. It seems really stupid but daddy was crying today as he was cooking a burrito for lunch. Just thinking about all of the hard work and effort that went into hand making this meal for us. It was so very touching and we are very thankful; thank you Jessica Deboer!!!! Yes, a lot of little things make us cry every day but I guess that is par for the course.

We are so happy, so fearful, so ???? all at the same time. Sometimes we just don't know how we will make it through the day but we always do. We might be exhausted when we get there but we will make it. It brings a new meaning to "one day at a time."

Please pray for the side effects of radiation and chemo to be taken away from Rebekah. Please pray for the pain to be taken away. And please pray for mommy, daddy and Sarah too.

At The Hospital

We are at the hospital tonight. Mom, Rebekah and Sarah headed down to the hospital early this morning for radiation and stopped to pick up friend Pat on our way. We were done at radiation by about 7:15am. Our appointment at Clinic wasn't until 9:30, so we had some time to spend. We walked over to the hospital and sat down in the Atrium for a little breakfast. Rebekah and Sarah ate some snacks and then Pat took Rebekah over to the little cafe to see what she might want to eat. She wanted a cinnamon roll, so Pat bought one for her. She ate part of it and we kept the rest for later. We still had some extra time, so we strolled over to see Grandma C for a few minutes.

Once up at Clinic, blood was drawn and we played for a little while in the play room. Then Doc had our results back and counts were high enough to start chemo. He was a little concerned about the sores on her lips, so he took a swab to have them tested. He didn't see any other sores in her mouth or her throat. They could be from the Radiation or Herpes or some other infectious disease. If the swab comes back negative for herpes (which they can test for and treat) then he'll probably have the infectious disease doctor come take a look - just to rule out anything else. Since any infection can be serious for her, we need to be proactive. In fact, doc started her on an antibiotic which would treat it if it is herpes. We'll know more in the next few days. Please pray that it is nothing serious and that they heal.

We started IV fluids at clinic and then headed over to our room. We were assigned a room in the Infant/Toddler wing. Generally, they try to put us on the Schoolage wing because the rooms are singles and they try to keep chemo patients without roommates. The Infant/Toddler rooms are all doubles. Right now, we do not have a roommate, but that can change. It isn't crowded now, but who knows what will happen later in the week. They only had one small room available on Schoolage and no nurses who could take Rebekah. Please pray that she doesn't get a roomie. The rooms can be awfully crowded with a second patient (and their family).

Once we knew we were going to be admitted, I tried to call dad to let him know and my cell phone wasn't working. At the same time, he had been trying to get a hold of me and was getting a message that my phone had been disconnected. Pat's husband was trying to call my cell phone as well. Scott called Clinic to track me down. I had to call Verizon to figure out what the deal was. They were able to get it fixed. Just one more hassle that we don't need.

Pat's husband met us in the room and they helped us get settled and tried to get Rebekah to take a nap, picked up a lunch for me and then headed out. They were a great help! Thanks so much!

Rebekah finally fell asleep. Her lunch had come, but she didn't have any interest in it. About a half hour after falling asleep, she woke up coughing and sounding like she was about to throw up. I called for the nurse and asked if we could start the anti-nausea medicine now. She said that was fine and brought it in. Rebekah never went back to sleep. She ate more of her cinnamon roll and some goldfish, but wouldn't drink much.

She's not eating very well. Her weight was up a little from last week, but at the 10% loss mark. Doc is pushing for the feeding tube. We will have to see what we decide. Please pray for the "right" decision.

Dad was finally able to make it down mid afternoon. The inspector wasn't able to make it out in the morning, so that was frustrating. Grandma A came late afternoon and is spending the night with Rebekah tonight.

With heavy duty fluids, we were able to get her chemo started about 6:15pm. For five days, she will have 1 drug that runs for an hour and then another drug that runs for an hour along with a bladder protectant drug that runs for 10 hours and fluids that run the remainder of the time (to keep the chemicals from sitting in her bladder causing problems). In the past, they have started them an hour or two earlier each day. After the last drug runs on day five, we need another 24 hours of fluids before we can head home.

We need to be up early tomorrow, to take Rebekah over to Radiation. The anesthesiologist said he would meet us at her room and help get her down to radiation. We will see how it all goes. We'll put her in the stroller and probably need to take her IV pole with us. We'll make it work. Hopefully Sarah will stay asleep and help out.

Please keep up the prayers. Without them we wouldn't be able to make it through. We expect this to be a tough week and we're already pretty tired (or should I say exhausted).