A Busy Day

Rebekah has had a busy day, following the busy night that Dad described to you. Her appointment at clinic was at 9 am this morning. As you can imagine, many of the nurses and staff dressed for Halloween - although I didn't see any "scary" costumes - probably a good thing. She was wandering around at clinic and Mary thought she needed a toy or hat. She seemed to want a hat a picked one out that had bears on one side and stars on the other. Before they will start Chemo, they want fluids running for at least 6 hours and then her urine has to not be too concentrated. They started fluids while we were still in clinic.

By 11 am we were in our room getting settled in. They put us back in the Isolation room that we were in during our last stay. Not because we need to be, but because it was the only Oncology room available. I keep asking if we can move, especially when I see another room opening up. No luck. Each time another room opened up, there was another child scheduled for it and they wouldn't move us. They don't want people to dislike the room and insist on changing. It is the best room for keeping germs away. But whey you have some ability to fight germs, the room isn't a necessity.

The TV wasn't working when we first got into the room. I asked the nurse if she knew why and she call facilities. They told her that there were people working on the tv system and that was probably why. It should be better in a little while, they said. Well, it still wasn't any better by dinner time, so we asked again. The maintenance guy came in and checked what he could, but couldn't easily find the answer. It probably had to wait until the people working on the tv system were back in tomorrow. Uugh! Well, apparently a TV not working was enough reason to move us to a different room. They had to clean the room, but as of a little after 8 pm we are in a "regular" room with a shower and room for a rocker/recliner and regular chair, too. It feels much better to be able to stretch out a little.

About noon, IV Therapy came in to change Rebekah's Central Line dressing. That is never something Rebekah wants as it hurts to take the 4 inch by 4 inch bandage. We opted to give her benadryl (since she needed it anyway for her runny nose) and wait a half hour or so to do the dressing change. IV Therapy came back about an hour later, when she was just about asleep, and changed it. She wasn't at all happy about it, but she is doing better than she used to do. She got Pooh, Piglet, Tigger and Eyeore stickers for her reasonably "good" behavior during the dressing change.

She went down for a chest xray as part of the standard treatment, not because they thought she needed one right now. She was asleep for the trip down, but had to be awake for the xray and sat up in her bed for the trip back up with big smiles on her face. She enjoys the rides in the bed.

Speech Therapy came in to see her and play. She always enjoys "play" time with the different therapists.

There was a halloween party in the classroom, so we stopped by there, too where Rebekah painted Daddy a picture, got a bag full of goodies and a poodle-skirt costume. Occupational Therapy caught us over checking out the costumes and asked if we were up for some Therapy. Since we were finishing up with the party we headed back to the room. The Occupational Therapist wanted to see how she did with dressing herself, so she helped Rebekah change into the costume (it is a dress). She wanted to wear the hat that she got earlier today at clinic. Not exactly the coordinated look that Mom might go for, but she was content and that is what matters most.



Once dressed up, she had to go for a walk and show off to the nurses. She took a lap around the ward, stopping in the Starlight Lounge and picking out a Magna Doodle type toy that she wanted to play with. We got it cleaned up and headed back to the room to play with it.

She played for a little while and then fell asleep. Pretty soon, it was time to start Chemo. This set of Chemo drugs run for two hours each day for 5 days and then she needs 24 hours of fluids after that.

Then there was cup cake decorating in the Starlight lounge, so we headed down there, too. She enjoyed decorating it, but didn't want to eat it.

Daddy stopped in a few times, Grandma C brought Mommy some lunch and all in all it was a busy time.

Here it is, after 10 pm and Rebekah is still awake. Her normal bed time is between 7 pm and 8 pm (with the time change maybe between 6 pm and 7 pm), so this is late. Not unusual for the hospital, but still leads to "crabby girl syndrome". Mommy turned off all the lights and the TV and I'm sitting in the dark typing, hoping that Rebekah will finally succomb to sleep. I'm sure that she needs it.

I know that I have rambled on and on, but I hope that I haven't bored any of you too much. Busy days at the hospital can help make it feel more "normal" and less hospital like. Rebekah enjoys the activities and all the different people coming to "play". With her counts up, she can be out of the room and enjoying some of the activities, which certainly helps. Just getting out for a walk or wagon ride or stroller ride can be a big boost for her attitude. It certainly feels good to have her "want" the activities and have the energy for them. We like seeing some high points, especially knowing that some low points will be coming again soon thanks to the round of chemo.

Rebekah In The News

Fund Raising With A Side of Toast.  A story in a local newspaper about Angela Kohama and the breakfast she is putting on for Rebekah next Sunday.

And when it rains it pours.

Rebekah and Kory's Foundation. This is a story about Kory's foundation, a huge supporter of ours and how they have helped. This appeared in Portland Monthly Magazine, November edition. The facts are just a tiny bit off and the web site for Rebekah is WAY off. But MAJOR thanks to Steve J. for running out there and securing www.saverebekah.com for us!

Starting All Over Again

We are here – but aren’t we always.  Here, for those who might have just come across this Blog, is Emanuel Hospital, Portland, Oregon.  Yesterday we finally got out of the house which took a bit more than usual since there is a chance that carpet might be installed in the new playroom and living room this week so we had to have all the furniture and everything else moved – lots of work!

We dropped the trailer off at the hospital and then drove up to Debbie’s to drop Sarah off for the week.  Even though we have known her for quite a while, we have never been to Debbie’s house before. It is BEAUTIFUL – no wonder Sarah never wants to come home.

We got back to the trailer last night and started setting things up.  That’s when daddy asked “Where are my files?”  Since the trailer is only 150 sq feet or so it did not take too long to figure out we left them in the office.  UGH!  Daddy made a late night trip back to the office and mommy continued getting the trailer set up, the beds made and Rebekah off to sleep.

Rebekah did not sleep real well in this newer, noisier environment.  Every time we heard an ambulance or a train or … she kept trying to tell us what she heard.  The first couple of times she heard it I thought she was asking for her sister, “chi chi” but then realized it was in conjunction with a train from the train yards about a mile away – “choo choo”.  Phonetics.  Then an ambulance or fire truck – “uh oh” and on the night went.  

About 1:30am the wind was so bad that it was shaking the trailer and flapping the awning so much that I had to go put the awning back down.  Then, about 3:00am Rebekah started throwing up.  I don’t think I have seen her throw up that much stuff in a long time.  There is now a completely full trash bag of rags, clothing and bedding.  Now, back to the 150 sq feet…  Daddy was not doing too much better than Rebekah as daddy has an overly sensitive nose and can handle just about any bodily fluid except throw up.  

We obviously did not get a lot of sleep but it was all worth it this morning when we were listening to the radio and traffic reports which were reporting “stop and go” traffic for just about our entire commute had we been trying to get here at 9:00am from home this morning.

Every day is an adventure and every hospital week even more so.  Please lift us up in prayer such that there not be too much excitement this week.

Trying To Get Off To The Hospital

Rebekah is doing really well and we are excited for that. We have had several days in a row of a chippy cheery girl who is playing with her sister, enjoying company and to the best of her ability enjoying life.

It's nice to actually have time to pack methodically compared to an emergency trip and just throwing everything in. Mommy has been able to pack each bag of clothes with exactly what she wanted in it. Daddy was able to pack his files one by one, knowing what has to be done on each as well as pack the fridge, food and other parts of the trailer just right. Goodness knows we are still forgetting something.

Yesterday friend Mindy, the official Banks Fire Department photographer came by to take a picture of us for the Christmas presentation she is doing.

Daddy feels a bit like he is letting the department down because he is not nearly as active as he likes to be. We hope they understand.

Mindy, after taking the pictures, asked if we had any limits how she uses them. We told her "Of course not." Then she asked very reluctantly, "What if Rebekah dies before then?" It really makes you think.

Worth Repeating

Taken directly from Maggie's Site:

Margaret Alaina WilliamsMarch 14, 2002 – October 27, 2005

Margaret Alaina Williams, 3, died Thursday in her Beaverton home surrounded by her loving family after a brave battle with a rare form of leukemia.

Pastor Rick Ellingson will officiate at a traditional memorial service for adults only at 11:00 am on Tuesday, November 1st at Skyline Memorial Gardens. A special service for children will be held Sunday, November 6th at 2:00 pm at Creative Children’s Center in Beaverton.

Maggie was born March 14th, 2002, at Providence St. Vincent Medical Center in Portland. She was the oldest child of Rick and Elizabeth Williams of Beaverton. Although she was named Margaret after her great grandmother, it was the nickname of “Maggie May” that stuck. Maggie was a third generation Rod Stewart fan, and last month realized a dream when her favorite rock star invited her and her family to a tea party in his Beverly Hills home.

The precocious 3-year-old girl was bright, funny and at times determined to get her way. She was a natural charmer who loved to sing, dance and play. She attended preschool at Creative Children’s Center, where she enjoyed painting, drawing, playing dress up and entertaining her young peers at circle time. Maggie also liked to read books, have tea parties, dress up like a princess, eat finger foods that she could dip in an array of sauces and dance along with singers in the “American Idol” and “Rockstar: INXS” competitions.

Her all-time favorite activity was playing with her baby sister Angelina, who she taught to dance. Maggie was a proud big sister and a cherished daughter, cousin, niece and granddaughter.

Her smile could light up any room and brighten the life of anyone she encountered. She had a strong will and carried herself with a dignity and grace rare for one so young. Maggie wanted to one day become a doctor, nurse, rock star and princess. Instead, she became a hero with a heart of gold.

Survivors in addition to her parents and baby sister include grandmother Sharon Trett; grandparents Robert Trett and Sara Nelson; grandparents Al and Elaine Williams; great-grandmothers Margaret Borchardt and Lois Trett; and many loving aunts, uncles, cousins and friends.

A special thank to Dr. Oleson, Dr. Norwood, the nursing staff at Legacy Emanuel, the transplant team at Doernbecher and the hospice staff who opened their hearts and gave so much to Maggie and her family.

Memorial contributions may be made to the Children’s Cancer Association,

www.childrenscancerassociation.org.

End Of The Week

Thank you all for your many kind words about the loss of Maggie May.  It is clear that there are many of you who out there who care about Maggie and her family as much as you do about Rebekah and us.  We ask that you continue to pray for all of us.

This week has been a very positive week with Rebekah.  She has, in many ways, come back to be our little girl for the first time since radiation.  Yesterday evening she brought her own Dora cup and all by herself crawled up on daddy’s lap on the couch and put her head against my chest.  A little bit later she crawled off my lap and was sitting next to me on the couch and reached behind me to try and put her arm around me like I always do her.  It was very heartwarming to us and made me cry.

It’s the first time since radiation that she has almost “recovered” from the chemo therapy effects before the next round.  Unfortunately, each round takes its toll more and more and she has only gotten to this point days before we start again on Monday.  

Today we have a work day with the crew from the Helping Hands Ministry from Our Place Christian Church.  It is supposed to be as much of an outside day as inside, but the weather is not being real cooperative.  We will see how much actually gets done.  While we were in the hospital last week, Helping Hands held a bake sale and fall festival in honor of Rebekah and one other family.  They raised nearly $500.00 for Rebekah and brought us that and the left over bakeries the day we got home.  Having eaten nearly all of the cookies in a week we KNOW why they raised so much money!!!  Thank you Helping Hands!

Please pray for us as we head off again to the hospital for what will be a 6-8 day difficult stay at a minimum.  We are not looking forward to it again, but at least this time we knew it was coming.

In Loving Memory...

of Maggie May Williams. This has obviously been a difficult evening for many whose hearts have been stolen by this beautiful little girl. To Quote her own site: "She was surrounded by family, just like the day she was born, and she went very peacefully. A traditional memorial service for adults only is being planned, as well as a special children's service."

At 5:20 this evening a very strong need to find a "white rose" came over me. I knew what it was for, just not when. Then, an hour later, we received a phone call telling us of the loss of Maggie at the very same time I felt this need. I went and held Rebekah and cried and then came back here to share with you. Out of respect for Maggie's family, all I could post was this beautiful rose until her family chose to make a public announcement which they have now done. This blog is about sharing our joys and our sorrows. This has been one of the most sorrowful days.

The beautiful white rose that has touched so many of us in so many ways is by and used with permission from Australian photographer Lisa Hocking Please see her blog and thank her for its use.

Some Improvement, A Milestone

Rebekah is actually eating a little bit. She ate a few bites of cheerios and apple jacks this morning, a little cheese, some veggie crackers and a couple little ravioli this afternoon, some cheese and a bite of apple this evening. It was only a few bites here and a few bites there, but she was requesting it and she was eating the bites. It is improvement!

In addition, she continues to want water in a syringe and she wants to make sure it is cold. It may be a slow way to get fluids in, but she is taking that by mouth. We want to encourage oral intake in whatever manner we can get. She wants most of her medications in her mouth, too. And she wants to do it. Give her the syringe and she will take care of it. She is actually doing a really good job of getting it all down (and not making a mess).

As far as medications, she is getting some Benadryl to help her breathe (especially while she’s trying to sleep) and occasionally some Morphine. She is complaining periodically that her mouth hurts. She also continues to get her antibiotics through her central line at 2am, 8am, 2pm and 8pm. Those will continue until Sunday – just in time to go back into the hospital. No rest for Mommy.

We are always encouraged by the hits on Rebekah’s Page. Today, we hit a new milestone: 25,000 visitors since May 1st. That is exciting! Please keep checking in on us, praying for us, commenting and supporting us through this process. It is always an encouragement.

Her temperature continues to be a little higher than her normal, but has been staying below "fever". Thanks for the prayers.

With her counts up, she seems to be healing at least some and feeling a bit better. She has times that she is all smiles and playing and enjoying herself. She has been sleeping more than normal, however, so I think she still is not feeling great. As her treatments continue, each round of chemo will knock her down more quickly and she’ll stay down longer. That means that she may not have as many good days between treatments. We seem to be seeing some of that.

We delight in seeing little improvements – like eating and drinking from a syringe and seeing smiles on her face. It is a cycle - chemo knocks her down and the shots help to bring her counts back up and help her feel better and then it is time for the next round of chemo. Each week brings us closer to the "End of Treatment" – that is the end of chemo (we hope) – in February.

It is 2am, Time for Antibiotics

I awakened to my alarm going off and Dad giving me a squeeze as if to say "your alarm is going off, you are going to get up, right?" I look at the clock and realize that it must have been going off about 3 times already and this is the first I am realizing it... No wonder Dad wanted me to be awake.

I stumble to the bathroom - better safe than sorry. And then grab my supplies to get Rebekah's antibiotics started. She stirs when I enter her room. I get her hooked up and she starts complaining that her mouth hurts... I get her some Benadryl - mostly for her throat but hoping that will help with her mouth, too. She takes the Benadryl in her mouth and then wants the syringe filled with water. (She has been drinking syringe after syringe after syringe of water - I guess we'll do just about anything to get her to drink and take in food (or drink) in her mouth.)

Then I go get more nutrition for her feeding pump, since it is just about empty. I add that to her bag. Then I change her diaper. (With feeds going all night long, she soaks her diaper at night and it needs changed at least once.) I throw away the trash from both getting the antibiotics started and adding to her nutrition. I check her temperature - 98.7 F (good!). I figure I'll lay down in the spare bed and try to get a few more z's before the antibiotics are done - I still have another 40 minutes.

Rebekah asks for a different blankie - she wants the "star" blankie instead of the "Dora" blankie, so I get up out of bed and switch them around. Then she wants her water and she says she wants it cold. I explain that if she drinks her cup, then I'll get her some cold water. Now she wants both the "star" blankie and the "Dora" blankie, so I get up again and fix that for her. This time, I leave the room, since clearly she won't let me get any rest if I'm in the room with her.

By now, she has about 30 minutes remaining, so I figure I'll work on an update. I may as well get something accomplished and I'm afraid if I fall asleep in another room, I won't be awakened by the alarm of the antibiotic pump. I grab my laptop, sit on the couch and start typing.

"Thud" comes from Rebekah's room. I go investigate to find her antibiotic pump on the floor - still "pumping" without the syringe... Her syringe is on her bed - intact. I pick up the pump, get the syringe installed and set up again and restarted and then set it back up on her dresser. All the while explaining to Rebekah that she can't pull on her tubes...

I look down at her diaper and she has untaped it and is complaining about the owie in the diaper. She is insistent that she needs a change and desetin. Her diaper is still dry, but I oblige her and cover her with Desetin (I hadn't figured she needed more, but I guess she thought she did) keeping the same diaper.

She complains more about the owies in her mouth, so I get her some pain meds. She wants to do it herself. I help her to get it into her mouth.

Back to the couch to type more, while I wait for her antibiotic to finish. I still hear her making noise every once in a while... She still hasn't fallen back to sleep.

Soon her antibiotic pump will be beeping. Then I'll need to disconnect the tubing, cap it, flush her line with saline and then heparin, get the next antibiotic syringe out of the fridge and connected to the tubing, and dispose of the syringes (antibiotic, saline and heparin) and the trash. Then, I can try to go back to sleep. Good Luck! The last few nights, I've layed awake thinking about Rebekah and all the things that need done around the house as well as Maggie and the other kiddos who are fighting cancer, too. Uugh!

Gotta go. The pump is beeping. Hope you all had a good night's rest.

Daddy's editorial addition: What mommy doesn't say is that this whole process repeats itself EVERY 6-8 hours, 24 hours a day.

Maggie

Things have been put into perspective for us once again.  Please stop what you are doing and take some time to visit and pray for Maggie and her family.    

Heads In The Sand

Home is great.  Not sure we will get to stay.  

Rebekah continues to have a fever.  It was borderline this morning and we are kind of sort of trying to ignore it.  It is a bit higher than borderline now.   Maybe if we take it again in an hour…  

We really don’t want to go back to the hospital which would really mean from now through NEXT Saturday, or 12-13 days….  Ugh.

We are Home

Doc came in about 10am, yesterday, and asked if we were ready to go home. I told him, we were waiting on him. Rebekah has been on two antibiotics for the last few days and I knew she was going home with one of them. I thought doc had said she was going home with the Flagyl, but the nurses all seemed to think she was going home on the other one. So, I asked Doc again which she was going home with and he said Flagyl. I told him that I didn't think that was the one that Home Health was expecting us to go home on. He called them and sure enough they had the wrong one, so he had to work on getting that switched to the correct one. He thought that Suzanne had everything worked out so that he wouldn't have to deal with them on a Sunday. Oops!

Her next dose of the antibiotic was due at 2pm. If we were going to get out of there and get home in time for a nurse to come and bring the equipment, supplies and antibiotics and teach us to administer them in time for the 2pm dose, we had to get moving.

The nurse finally made it out about 2:45. She was delayed in getting the "correct" antibiotic and then travel took longer than anticipated. So the antibiotic was a little late. The pump she brought was just like the one we used last time we went home with antibiotics, so we were familiar with it. She gets the antibiotic every 6 hours - at 2am, 8am, 2pm and 8pm. It runs for an hour.

The nurse also brough with her a new feeding pump and the supplies for it. Hopefully, it will be easier to use than the other style pump we had been using. Only time will tell, but I haven't had any issues yet with it. It has a little carry bag that comes with it for portability, but the bag to hold the formula and go portable is only half the size of the ones we are used to. It isn't a problem during the day, but at night could be. She did bring some larger bags that we could use at night, but then we're using two bags in a 24 hour period and there is always some wasted food that way and the bags are only good for 24 hours and I hate to be wasteful. Right now it isn't an issue, since we have to be up at 2am anyway to get antibiotics going.

She also brought a very light weight and short IV pole for our use. Rebekah can more easily move it around.

Grandma brought Sarah home around dinner time and it was good to see her. She must have been pretty pooped from the last week, since she slept in really late. Mom kept having to check on her.

It is good to be home, but unfortunately with having to give antibiotics at 2 in the morning and then again at 8, Mom didn't get a very good night's sleep. Rebekah was awake during the 2am antibiotics and up before the 8am antibiotics started. The antibiotics will continue for 7 days - just in time to go back into the hospital - yippey. Guess mom won't get much sleep this week either. Uugh!

Rebekah continues to have borderline fevers, diarrhea (although not as often and not as much volume), some nausea and lots of congestion and her mouth continues to hurt. One day at a time, one hour at a time, one minute at a time... That is all we can do.

A Short Update

Mommy and Rebekah are on their way home.  Rebekah could not wait to get out of the hospital and came, in the stroller, down with daddy to take a load of stuff to the van and , after emptying my arms, when I turned around to go back she started screaming “no.”

Daddy was out running errands this morning and didn’t get the trailer packed so he is now packing and will follow behind them in a while.  This will be our last update from the hospital.  At least for a week.  

A week from today we will be pulling right back into this same spot.  Ugh.

Rebekah's Update for Today

Last night as we were getting ready for bed, we decided that Rebekah needed some Benadryl to help get rid of the congestion and help her to sleep. She didn't want it put in her g-tube but wanted to put it in her own mouth and drink it. She got most of it down, but not quite all of it - some of it was spit out. Then she wanted the flush of water, too, to put in her mouth. Then she wanted more in the syringe. Mom filled it with PediaLyte and she must have had 4 or 5 syringes full of PediaLyte.

She continued to be really gurgly and only slept for a short while and didn't really go back to sleep. At midnight, she got another dose of benadryl. She went from one breath being gurgly to the next breath being clear. Mom had to get out of bed to make sure she was still breathing. Oh the joys of watching sick kiddos... As the benadryl started to wear off, she got more gurgly and once the next dose kicked in, her breathing quieted down.

Just spoke with a med student and she said Rebekah's White Blood Count was up again this morning. We have to wait to hear from Dr. Norwood to find out for sure if we get to go home.

Rebekah is continuing to have diarrhea and we are having to keep her bottom covered in desetin to protect it. The bad rash has diminished, but we DON'T want another one.

We are still hoping to go home today. Don't know when it will happen.

A VeryRough Night

It was a pretty rough night.  We had not gotten to sleep at all by 1am and about then we started throwing up.  It hurt to even lay down.  Then about 3am it was throwing up and diarrhea at the same time – that lasted until about 4am when finally it seemed we were going to be able to get some sleep.  But no, that could not happen as that’s when the turmoil outside the door started and has been so loud that even now, at 8am, we can’t get some sleep.

I know you are probably saying “poor little Rebekah” but I haven’t even heard from them yet this morning.  This was just daddy.  I think I ate WAY too much of a lot of rich food that was brought to us yesterday and had a touch of the flu bug.  And since about 4am they have been trying to take advantage of the “empty” weekend parking lot and blow/vacuum leaves and are still at it.  

I will, however, post an update from over in Rebekah’s room once I get one.  How she slept and her counts this morning are going to be critical as to whether we get to go home today.  

We are all feeling a bit better.

Rebekah is doing a little bit better on her blood counts and it is looking like we are going to get to go home tomorrow, Sunday.  Of course we are still holding our breath is nothing in our lives is for sure except what happened yesterday.  You should note that “for sure” is what did happen yesterday, NOT what we think happened yesterday as that is usually wrong in our mental state.  She had a pretty rough night with coughing, getting upset, etc.  Her fever is still borderline and she is staying on Tylenol.  Even so, we are still “planning” on leaving tomorrow.

Thank you all for bearing with me through yesterday’s frustrations.  What a difference a day (and some friends) can make!  Just about everyone that did not deliver yesterday had a very good excuse and we totally understand.  Unfortunately that didn’t help things to get done, but stuff happens.

Late last night (this morning…) Mark, Steve, Caron and Kris stopped by after a concert.  They brought some food, munchies and some beer and hung out talking in the trailer until 2am.  Mommy missed it sleeping in the room but daddy felt like back in college days just hanging out talking – except we only had one beer and were quiet.  It was nice.

Then today the Juengels brought TWO pies (at their questioning daddy requested apple OR cherry so they brought both) plus a full home cooked meal that we are going to eat this afternoon and that is great.  

Then a client of daddy’s stopped by the trailer with a wonderful fruit and goody basket just because – that is totally awesome.  

Caron is at our house cleaning things up so mommy doesn’t have to come home to frustrations tomorrow – better than great or awesome!  

AND Grandma M came to the hospital and is sitting with Rebekah and mommy is actually here in the trailer sleeping while daddy works (and plays with email and stuff).  

Here I sit in the trailer tucked into and under trees with leaves in very beautiful colors.  The trailer is all opened up with fresh crisp fall air blowing through.  Beautiful mommy is lying on the couch/bed with a blanket over her sleeping peacefully.  Soothing Christian music is playing in the background.   And a scented candle (see goody basket above) burns filling the trailer with sweet delight.  

Yes, things are going a little better and, even if just for a moment, we are able to forget some of the trials.

One of those days...

Warning – not exactly a “Rebekah” update.  

Did you ever have one of those days?  Daddy did today.  On top of not being able to do anything to “Fix” your little girl and having to just sit there and watch her hurt and be sick, everything seemed to go wrong today.  Work stuff didn’t go like it was supposed to and some people didn’t get their documents (because I didn’t get them).  Then other appointments didn’t come through like scheduled.  I don’t think that people realize that when you can’t do something on your own, and someone tells you they will do something/get something, that you really count on that and it hurts when they let you down.  Finally, friends and family both call and ask “what’s going on” because “we don’t have time to read the blog…”  Did it ever occur to anyone that we do the blog so we don’t have to answer that question 10x a day.  Our normally “thick” skin to stuff gets really thin when all of this emotionally stuff is thrown on us.

Finally, I tried to do something really nice for Rebekah and it totally backfired.  Rebekah has been asking for Dora and this morning said she wanted to see Veggie Tales.  I talked with the trustee of her trust (www.HelpRebekah.com) and she agreed that, although it is not a medical bill, the trust can buy a small DVD player for Rebekah to watch stuff in the hospital.  I went to Costco and got her one and got back and showed it to her.  She was excited and pointed to the TV on the wall where she wanted to see it – and sure enough it would not work.  The video output is broken – sound but no video.  Brought it back to the trailer and the same thing here.  It’s really tough seeing her disappointment and this was just the cap to the end of a bad day.  

I'm sorry if any of you take personal offense at something you see here - it was not meant at anyone personally and I'm trying really hard to generally vent here and not to jump down someone's throat directly. I'm sorry to the rest of you for making you hear about daddy's emotional stuff but this blog is about the family too.  Thanks for “listening.”  

Seems to be Doing Better

Things are looking at least a little better. Her White Blood Count was 300 today which is up, still not real great but we'll take any improvement. Please continue to pray for higher White Blood Counts.

The diarrhea seems to have subsided. I haven't seen the one diarrhea diaper after another after another this morning like I have at least the last two days. It is possible that she eliminated (in her diaper) all of the icky bacteria. And I'm sure the antibiotics are helping, too!

Her temperature has been down and no longer borderline for fever.

When doc was in today, he was talking about having his staff make sure that our Home Health company would be ready if we are discharged on Sunday to bring out antibiotics for us, so that we wouldn't have to stay until Monday just because we couldn't get Home Health antibiotics. So it sounds like Sunday might happen. At least today the estimated departure date didn't get put out farther...

Since our insurance changed the beginning of this month, we had to change Home Health companies. The old company finally got paperwork switched to the new company late last week and we haven't had a chance to get supplies and equipment from the new company, yet. They were planning to deliver supplies to us Wednesday of this week, but we weren't home. We still have equipment from the old company, however they were pushing to pick it up this week because the new company has to be ready as soon as we are discharged. I had to explain to them that there was no way for them to do that because I didn't have all the equipment with me and there wasn't anyone where the equipment is. Uugh! Just one more of the frustrations that we have to deal with in this whole ordeal.

Mom and Dad got a chance to eat some homemade spaghetti last night (thanks Wyla) while Uncle Chuck sat with Rebekah. We also were able to see Sarah at the same time. It was good to see her and she seems to be doing well. Unfortunately we couldn't take her in to see Rebekah. We would not have been able to let Sarah down or let Sarah and Rebekah touch for fear of Sarah getting the bacteria that has caused Rebekah so much trouble. We felt it would be worse for Rebekah to see her from a distance and not be able to hug on her than it would be for Rebekah to not see her sister at all. It was a hard decision, but I think the right choice - as much as we hated to keep them apart.

Double Uugh!

More fevers today - up to 38.9 C (102 F) and chills and just not being herself. We are stepping up the antibiotics to a broader spectrum and heavier duty. Still focusing on the gut where we know we have issues. According to doc, what we really need is white blood cells and then we'll start to see dramatic improvement. So PRAY FOR WHITE BLOOD CELLS please.

She is resting now and really wants mom to lay down with her, which I've done now and then - especially when she was really looking bad. She wanted Pashley bear in bed with her and she just asked to have her food started back up - it has been off for several hours. Pray for improvement. Doc is saying optimistically we are looking at going home Sunday or Monday. We shall see. Time to lay down with her again, but wanted to get an update up.

Uugh!

Looks like Daddy put up a post while I was typing this one. Sorry for any duplication of information.

Rebekah had another rough night. She threw up several times overnight and this morning. She continues to have diarrhea and now seems to have a sore bottom from it. The diaper cream wasn't quite getting spread far enough. Uugh!

The stool sample we sent Tuesday came back positive for Clostridium Difficile (C.Dif) which is a bacteria that we all carry with us but will sometimes get out of hand. Dr. Norwood said it is pretty common for kids to get it. It will be treated with a different antibiotic. We will drop one of the two antibiotics she has been getting (since she hasn't shown positive for any skin type infection) and start this one up. And probably have to go home with this one - when we eventually go home.

They put a "Contact Precaution" sign up on her door because this is highly contagious, so everyone needs gloves and possibly gowns. Doc said it would be a bad idea to have Sarah come visit. Uugh! Mom and Dad are missing her, as is Rebekah. Mom is wondering if she has gotten it, since she was having issues last night. If the issues continue, Mom may get treated, too.

The C.Dif can easily explain the diarrhea and the fever and could contribute to the vomitting.

Her white blood count is still nothing, so she is still in isolation and needs all the help she can get fighting the infection. Doc comments today were that she might get to go home Saturday. As always, one day at a time...

She just had another fever (38.7 C or 101.7 F) and we have to be fever free for at least 24 hours to go home. Not that we would go home tomorrow anyway.

She doesn't look like she's feeling too well and wants to be in mom's arms or have mommy laying down with her much of the time.

Another Day/Some Findings

Another okay night followed by lots of throwing up and more diarrhea this morning.  This is getting pretty old, especially for mommy.  

Last night’s labs came back and Rebekah has a colon/intestinal infection called “C-Diff” (which is all I have gotten from mommy so far this morning and not even sure that we have that right).  It is pretty highly contagious BUT (no pun intended) easily cured/protected from by proper hand washing after contact with Rebekah or anything that comes out of her.  We are switching antibiotics to something that attacks this more directly.  Doctors are not holding out much hope for leaving in the next couple of days.

Really difficult on us is that Rebekah needs to be kept away from little kids who can’t take proper precautions (like keeping their hands out of their mouths without washing).  Unfortunately that means no contact with baby Sarah which usually helps Rebekah a lot.  We are definitely going through Sarah withdrawals – I think daddy more than anyone!  

Emotionally I am doing a bit better than yesterday.  The 20 month old baby boy is still alive, which I was not sure was the case yesterday, and really in need of prayer.  Not sure where we go from here.  Not sure when we do it.  Frustrated at the lack of control (as always).  

Good/Bad News

As always there is good news and bad news.  The good is that good friend Connie came over and mommy and daddy were able to actually get away for about 2 hours and go out to eat.  It wasn’t home cooked but being able to be together in some situation other than passing in a hospital room was really nice.  

The bad news is that Rebekah’s fever is back.  We just drew blood and will be sending it down for more lab tests to try and find out what is growing there.  That means 48 hours more, at least before we can leave.  Saturday is looking like it might maybe could be the earliest without a miracle.  We are always ready for a miracle.  

Over all Rebekah continues to not feel well, have low immune system counts and be “evacuating” from both ends.  Poor little girl (mommy) and Rebekah has it tough too!

Thank you for your support, it’s the lowest times like these that we need it more than anything.

Help, Please and Prayer Request

It’s funny when so many people have asked to help and then now, when we actually need something, we can’t figure out who to ask specifically.  To be honest we are REALLY tired of frozen dinners and hospital food.  When we left home the fridge in the trailer was completely empty except for some frozen dinners and the cupboards bare except for the regular canned food that is always in there.

We could really use a home cooked meal or two.  It seems stupid when we have the cafeteria and the cupboards actually have stuff in them (in other words we are not starving and can always go to the store or restaurant) but there is just no “love” in any of that.  

In addition, we could use someone who is REALLY WELL – NOT SICK AT ALL to maybe stay with Rebekah for an hour or two so that mommy and daddy could maybe have a meal together one evening.

Right now it looks like we are not going to get out of here until Saturday at least and we are getting frustrated with that and emotionally drained.  It’s even hard to ask for help at this point.  

Finally, please keep a 20 month old baby boy who is in the burn unit (and his family) in your prayers as he has really grabbed onto daddy’s heart right now and daddy is pretty hurting over these “strangers.”

Not Much Better

Rebekah hasn't really improved all that much. Her temperature is hovering just under the fever line (38.5 C) between 38.1 C and 38.3 C. It has been hovering there since about 4 pm yesterday. Her white blood count is still nothing - it hasn't changed since Monday. I wouldn't expect it to go up until later this week under normal circumstances, so who knows what will happen with her fever and current situation. Her platelets are down to 22. I think 20 is the mark where they would give platelets. With it being close, they may want to go ahead and give her platelets anyway. We will have to wait and see what doc says when he comes in.

I don't expect that we will be going home today and it just has to be taken day by day. Her counts are still in the dumps, fever is borderline, she continues to throw up and have diarrhea. She does seem to be doing a little better with the vomiting now that she has the ativan, but she is sleeping more too. Last night she wasn't up every hour and there was one stretch when Mom got about 3 hours straight to sleep. It is really sad that 3 hours of sleep is worth rejoicing over, but nonetheless it is an improvement.

Already this morning, she has had Speech Therapy and Physical Therapy in. Actually, they worked with her together. Rebekah had been looking tired before they came in, but perked up so that she could play. She was pretty tuckered out at the end of it and is sleeping now. It was clear to the Physical Therapist Amy (who has worked with her before) that she wasn't feeling too well.

Update: Rebekah coughed in her sleep which woke her up. She screamed, wanted some attention from Mommy and did not throw up. She is laying back down and thinking about going back to sleep.

It is a big waiting game. We never know what is going to happen. Neither Scott nor I want to rush home. We are here and until there is some improvement it doesn't make sense to us to head home only to expect to have to come back.

Mom's Thoughts on Today

It has been a very trying day with Rebekah. At times, it is clear that she is not feeling well, and at other times she seems to be doing just fine. When she coughs, she gets agitated and throws up and gets more agitated and throws up more. It has never been huge volumes and some of it is mucous, iand it is probably good to get rid of the mucous that might be bothering her throat and making her cough. Then, after throwing up, she settles down and seems to be feeling fine.

By Noon or so, it was clear that the Benadryl, Tylenol and Zofran (anti-nausea) medications were not the solution to the problem and something needed to change. We (Mom and the doctors) opted to add Ativan (an anti-anxiety medication that is also sedating) to see if that could at least help the cough-agitation-vomit spiral that we seemed to be in. The dose of Ativan is pretty small, designed to "take the edge off". Shortly after the first dose of Ativan, she coughed and didn't get too upset and didn't throw up so Mom's hopes were up. Then, a while later, she coughed and threw up again. Uugh!

After throwing up the last time around 4pm, she has been sleeping for the most part and has seemed reasonably content most of the time. I just hope that she sleeps tonight, too.

We stopped her tylenol at noon today (she didn't get the noon dose) so that we can see if her fever returns. Once it has been more than 24 hours since the fever started, they want to know if it is going to come back and if it does come back they will take more blood for cultures. She has to be in the hospital for at least 48 hours from the first blood culture and has to be fever free for at least 24 hours before going home. After noon, her temperature rose slowly to 38.3 C (100.9 F) and has bounced back and forth between 38.3 C and 38.1 C (100.6 F). It isn't considered fever until it reaches 38.5 C (101.3 F), so we've been toggling on the edge for several hours. Not knowing what our plans will be is difficult, but we are learning that it has to be our way of life.

Between the vomiting and the diarrhea, she has needed new clothes and new bedding too many times today to count. We've given up on tucking sheets and blankets in, knowing that they are only temporary. Thankfully, we've had several hours without either vomiting or diarrhea. She's been sleeping the whole time, but that is probably good.

She has had a number of visitors today – Speech Therapy, Occupational Therapy and Physical Therapy have all been in. She seemed to enjoy playing with each of them. Grandma C stopped in for just a few minutes to see if we needed anything. When she is in for unscheduled hospital stays, the Pediatric Residents follow her (in addition to the Oncologists), so we've seen two different Residents today, too, in addition to the Oncologist and the nurses who have been in.

I have spent most of the day in the room. Because we are in an isolation room we have two doors which need to be locked, so it is pretty isolating. We were able to get my computer working on the internet - thanks to Daddy buying a new network adapter. My old one had died. Now, at least, I can feel somewhat connected to what is going on in the outside world.

Rebekah just woke up and wants to be in Mom's arms, so I'd better get this up and put the computer away. Please continue the prayers that we can get things under control. Fevers need to go away, diarrhea and vomiting need to be under control and white blood count needs to be going up before we can even think about going home. My guess is that it will still be a few days. Only time will tell. If we were to go home too early, then we risk another emergency trip back.

?

I wish that I could write up how things have been going much better today but they have not.  We have not been able to figure out what is continuing to upset her and are now starting to put her on sedation to see if that helps.  She starts with a little cough which then causes enough irritation that she throws up and hurts a lot.  On top of all of that the antibiotics are causing diarrhea.  Over all she is not a real happy camper.

She asked for daddy this morning and it was such a relief to be able to drop everything that I was doing and run over to her room and spend a few minutes with her.  I can’t imagine how difficult that would have been to be an hour or more away.  The down side of it is that I have some clients that didn’t get to meet with me and some others that are coming to the trailer this afternoon in the hospital parking lot.  Not exactly sure what kind of image that is going to give but they have been well prepared for it.  I had to clean the trailer up too – is that a good thing or a bad thing???  

Please continue to pray for clarity on what is causing Rebekah’s problems as neither we nor the doctors have any clue at this point.

"Not A Good Night"

"Not a good night..." says mommy from the room.  Rebekah was up every hour (at least) screaming for mommy and throwing up multiple times.  We are not sure exactly what is going on but she is going in for a chest x-ray this morning.  Actually the x-ray is coming to her so she does not have to leave the safety of her room.  On a good note the fever appears to be done.  We will remove her from the Tylenol this morning to see if it is truly down or artificially down.  

A Long Monday

Nurse Jody says to say that Rebekah has been here 8 hours and is feeling much better. I am not sure how much better she is feeling but her counts are still bottomed out. She is getting blood, antibiotics and fluids. All of that should make her feel a bit better and fight off any bad things trying to get at her immune system.

Daddy could not take the thought of being more than an hour away from the hospital while we didn't know what was going on so he quickly threw everything he could think of into the camping trailer and came down. We don't know if we are going to have everything we need but, in reality, we don't need much for a week.

Nobody has been able to give us a clear answer on leaving here. Some have said Wed evening and some have said Friday or...who knows. Right now we don't feel like we have any answers only confusion. What we do know is that, at least for the time being, no visitors allowed.

More will come as there is more.

Not What We Wanted To Hear

I have been sitting by the phone waiting for an update from mommy.  It just came and Rebekah is in the isolation room – the room that has completely filtered and germicided (is that a word?) air, an air lock to prevent outside air from getting in, visitors closely scrutinized, etc.  It is the room no one ever wants to need to be in nor to be put in as a regular room because it is so small; it does not even have room for a parent chair.  I stated that they must be pretty full because that is the last room they put people in.  Mommy said “No, it was because they needed her to be in it…”

While waiting for the update I was doing some looking at blogs that refer to Rebekah’s.  One of the highest referrals was Living For Christ - Jo Jo Loves Jesus.  I have seen the referrals but have never really read her blog, until now.  I have not cried in a while (days or weeks which, in our trials right now IS a LONG while), until now.  Now I am crying for Jo Jo and her family as well as for Rebekah’s frail state.  I have added Jo Jo to the links down the right side.  

Please pray for them and for us.

The News

Talk about a whirlwind.  Maybe we are being blind but we totally did not expect this.  We are being admitted to the hospital through “at least Wednesday and more likely Thursday” says the docs.  Her blood counts were really low (almost non-existent) and her temperature has continued to stay high.  We are really surprised at this as she was not at all acting like she has in this situation in the past.

Of course nothing was ready at home for time away and now daddy is stuck trying to pack baby clothes, mommy clothes and who knows what else as well as make plans for Sarah AND try and keep up with work and his clients already scheduled for this week.  Ugh.  

Staying at the Hospital

Mommy just called from the hospital and it seems things are not going so well.  Rebekah has a temperature of over 101 which pretty much means they are not coming home unless some miracle happens.  Not sure what we are going to do with Sarah (or daddy for that matter).  Will let you know more when we know more.  

Goods and Bads

Mommy and the girls are off at clinic.  Pray for positive tests and a short day.  

Last night was really rough.  Again Rebekah seems to be waking up every 15 minutes to an hour screaming.  We are not sure what it is that is bothering her but having mommy with her is about the only thing that calms her down.  A good friend suggested that it could be an ongoing part of her withdrawals – could be.  

You would think that we would be getting used to having goods and bads all together but I am not sure that we are.  There are so many little things, little glimpses of joy in her eyes, little moments of playful child, etc. that are then followed by her being hurt, crying and only wanting to lie in bed that it is difficult.  If anything, though, we have learned to really REALLY rejoice over the beautiful moments whether they be 3 seconds or 3 hours long.  

We thank you all for the support and prayer that you have been providing.  It truly is the only thing that keeps us going.  Please pray for strength and rest for mommy and daddy as well as continued healing for Rebekah.

Busy Weekend

We've had a very busy weekend. We've been at home and had many visitors and been working on getting many things done around the house. Saturday Grandma M came out with Brad and Dinah, and Steve and Pat stopped by for awhile too. Sunday, Grandpa came out and then Connie, Angelica and Melysa came out. Grandma A was supposed to come as well, but she wasn't feeling well and didn't want to give Rebekah anything. Thanks to everyone for your help! It feels like a lot was accomplished this weekend and it wouldn't have happened without you.

Rebekah seemed to enjoy having the company. She was playing games with different people and laughing and just having a good time. Several people commented that "it was good to see her like this". I agree!

Yesterday, we continued to try bolus feeds and she tolerated them ok until the afternoon. After getting a feeding, she coughed and then threw up. Uugh! Now she really doesn't want the bolus feeds. Meanwhile, she really didn't want to be hooked up, either. I guess tonight she'll have to have food going all night long at a pretty high rate to make up for the day. Oh well! Now let's hope and pray that she keeps it down.

She continues to wake up at least periodically during the night, although it has been getting better. Last night, I think it was only once and she went to bed without complaining every 15 minutes (like she had been doing).

Tomorrow (Monday) is a clinic day. Hopefully her counts will be ok and she won't need any transfusions. I'm not convinced that will be the case. She's bruising a little, so her platelets may be a little low. Her energy seems to be up, so it doesn't seem that she would need red blood.

Friday Here and Gone

Rebekah is continuing to not sleep very well. Last night, she woke up several times screaming. Once, she had thrown up. Not a lot, but enough that her bed had to be made and she wanted her nutrition stopped. Because her food was stopped, yesterday was the first day in a couple of weeks that she didn't get her RDA.

Today, she has wanted the food off most of the day. She will say that she wants her food connected up and once I start it, she immediately wants it stopped. I'm guessing that she is hungry and doesn't want to be confined to the IV Pole. We tried something new - bolus feeds. Instead of using the pump we connect up a syringe and use gravity to fill her stomach. I've given her 4 ounces (or 1/2 cup) four times today by bolus feed. She has seemed to tolerate it ok. Since her RDA is nearly 6 cups, that would take 12 bolus feeds at 4 ounces each. Or we need to use some pump at night. We'll need to see what happens over the next few days, but it may be a change for the better.

Rebekah has a diaper rash that has her pretty upset. It isn't terrible, but it sure seems to hurt whenever she poops (or gets cleaned up). She also has a cough that really hurts. Desitin and Benadryl are our friends this week.

Once again, she was pretty insistent on going outside. She wanted shoes, socks, coat and hat on so she could go. Mom helped her with those and then we walked out to the mailbox to get today's mail. She seemed to enjoy the walk even though it was a short one.

Both yesterday and today, she had her Dora outfit on and then off and then on and then off... She seemed to want it on when she was watching Dora on TV. It was kind of cute to watch... Sarah looked pretty cute with Dora's hair.

Hope you all have a good weekend!

Rough Night; More Pictures

Rebekah and mommy had a pretty rough night and it continues on through right now. Rebekah was up, while not constantly but enough that mommy was up constantly. We are still not sure what is bothering her. This seems to be a continuation of what was going on in the hospital. Rebekah keeps asking for her tubes to have food but then, when we try to hook her up, throws tantrums and wants to be disconnected. I can't imagine being tied to an IV pole and tubes all day everyday. After being cooped up in the hospital it is no wonder she wants to be "free." I think mommy is pretty tired and frustrated.

Early this morning Brandy brought baby Sarah home. Rebekah was up instantly wanting to play with her. Rebekah could not quite get Sarah to sit next to her on the couch to read a book but she sure tried.

When in the store the other day Rebekah saw a Dora The Explorer costume and just had to have it. Since posting pictures sure seemed to get responses from you all, here is our little Dora:

We Are Home

We made it home. It was a long day, but we were able to fly the coup and head for home this evening. Chemo was done at about 5 this evening, but we decided to stay to get an antibiotic that Rebekah needs every three to four weeks. It had to wait until after chemo was done and we had the choice of staying today or planning to stay for two hours next week when we were in for clinic. Since Sarah was still with Brandy (and wouldn't be next week), and leaving at 5pm isn't much fun as far as traffic is concerned we opted to stay.

Daddy had to be in court this afternoon in Tillamook, so he took the camping trailer home early this afternoon and left Mommy and Rebekah at the hospital. We had brought two vehicles to the hospital, so that Mommy and Rebekah could leave when they were ready and we didn't have to work around Daddy's schedule. Mommy and Rebekah left the hospital just after 7pm and by the time we got home, Daddy had a nice fire going to make the house cozy.

Today was Kennedy's 5th birthday and unfortunately for her, she was admitted to the hospital yesterday for her chemo so she got to spend her birthday in the hospital. Now, the good side to it was that she was treated like a princess today by lots of people. Rebekah painted her a picture for her birthday. When we went to give it to her, she was in meltdown mode and didn't want company. We found Kennedy's mom and gave her the picture to give to Kennedy (we didn't want to leave without giving it to her). Later Kennedy (and her family) stopped by to tell Rebekah thank you for the picture. Her mom explained that it had gotten Kennedy out of meltdown mode and was therefore very much appreciated. Glad we were able to help in a small way.

Once home, Rebekah wanted to play and be free from her poles and tubes. She got up on the couch to get one of her leappad books off the half wall and then went and got the leappad off the desk. She sure knows what she wants. Believe me, she has been expressing her wants all day. She has not wanted to be in her room most of the day. After lunch she wanted to go night night - in her stroller going for a walk (not in her bed like mom would have thought). We made many laps around the 3rd floor today - mostly in the stroller. This evening, when we were discharged and ready to go, she saw the wagon and had to have a wagon ride, so we went on a wagon ride around the ward before climbing into the stroller and heading for the van. Oh the things we will do to keep our kids happy!

She hasn't slept well the last two nights and last night she was getting upset (screaming) with each diaper change (every two hours). I'm not quite sure why. I asked for some morphine at one point hoping that it might help, but it didn't seem to do much. This morning she woke up kind of crabby, but there was no identifiable reason for it. It was one of those days when she didn't seem right, but I couldn't tell what was wrong to "fix" it. Should I give her pain meds, anti-anxiety meds, anti-nausea meds, just hug and love on her or what? It was hard to tell if anything would help. It is much easier when I know what is wrong, but unfortunately that is not often the case.

Hopefully, she will sleep well in her own bed and we will all have a good night.

PICTURES!

Rebekah gets a visitor. She's a little unsure at first but very clearly happy!


In the post earlier today we talked about how great the nurses are here. This just proves it! Nurse Stephanie is great!! But, will someone please try and figure out why she (Stephanie) will post comments on Maggie's page but not Rebekah's????

Several Good Days in a Row!

Rebekah continues to play and have at least a little bit of energy.  She made it through the night without any major difficulties though mommy is not getting much sleep in the room.

This morning Brandy brought little Sarah out to the hospital to see Rebekah.  It is SUCH a delight to see the way Rebekah’s eyes light up when Sarah enters the room.  Sarah did not seem to have much interest in just sitting in the chair with Rebekah and wanted to just run around and play with everything.  No matter though as Rebekah seemed quite content to sit and watch Sarah.  My heart actually melted when Sarah bobble and fell down and started laughing – then Rebekah started laughing as well.  Seeing Rebekah laugh was such good medicine for mommy and daddy.  

It is wonderful to have such delightful nurses and staff here at Emanuel.  As soon as she got here, Nurse Stephanie took baby Sarah over to another wing to visit with Nurse Jody who as being “forced” to work in the younger kiddo wing.  I went over later and talked to Jody and they can’t believe how fast Sarah is growing up.  The nurses here have all gotten to see it as Sarah has now spent right at ½ of her life in the hospital with us going through all this.  

We want to thank the couple of you who have made some paypal donations over at www.HelpRebekah.com It REALLY is a big life emotionally as well as the obvious lift financially.  Even if you are not led to contribute like that please, everyone, take a trip over to www.HelpRebekah.com and check it out.  

A Good Day

This was what would have classified as a “normal” day at the hospital.  Would have way back when during one of our first chemo sessions.  In other words, there are many ways that Rebekah has come back to “normal”.  

We arrived at the hospital parking lot last night and had a pretty good night.  Rebekah slept okay and mommy and daddy a little less than okay.  Rebekah’s feeding pump kept giving us an error every couple of hours and that took getting up, resetting, etc.   Then, about 2am, the trailer ran out of propane on the one bottle and daddy had to get up and go outside and switch them over.  

This morning we went over to clinic and got admitted.  Rebekah would not stay in her room.  We would have had to tie her down and that wasn’t happening.  She took her IV pole and we went to the cafeteria for lunch.  Mommy and daddy had salads and Rebekah had just about anything she wanted off of our plates.  She ate a few bites which was really awesome.  We actually sat with Maggie and her mom and dad.  Rebekah watched as Maggie ate everything in sight.  Go girl!  Maggie was sure talkative and it was really neat to spend some time with them.

During the afternoon Rebekah got her chemo started and went for a few more rides in her stroller.  When daddy came over in the evening Rebekah gave him a painting that she and mommy made.  To daddy it was the most beautiful thing in the world.  

There are some really tough things going on with insurance and all that, but things have been so good with Rebekah that I don’t want to put that in here right now.  Just pray for starting over, deductibles, out of pocket expenses, and all that.      

De Ja Vu All Over Again

We are at the hospital again.  Well, at least part of “we” are.  Daddy and the trailer are set up in our “normal” spot in the parking lot.  It’s pretty sad when we have the system down so well that we are able to pull right into our “weird” angle spot without trial and error and have the trailer all set up and liveable in less than 30 minutes.

Mommy and the girls stayed at home through dinner and then will drop Sarah off at Brandy’s and mommy and Rebekah will be down to spend the night in the trailer and get admitted for the next round early tomorrow morning.  

Please pray for a peaceful, happy treatment and that we can get out of here on time or early.  

Getting Ready for Next Week's Chemo

We're making preparations to head down to the hospital tomorrow in preparation for Monday's admission. It is always a lot of work to get things buttoned up at home, the camping trailer ready, etc...

Rebekah talked on the phone with Grandma A and Daddy today. She always seems to enjoy talking on the phone. When she was talking with Daddy, Sarah was trying to get to the phone, too. I think we may have two phone-a-holics on our hands.

Rebekah is off the anti-anxiety, pain, anti-nausea medications that we've had her on for the last several weeks. Today was the first day of being off them all. We've slowly been working on getting her off them, but today she was off them all. Meanwhile, she allowed me to give her the mouthwash this morning and she brushed her teeth and wanted flouride drops. Those are all improvements. So Mommy doesn't need an alarm in the middle of the night tonight. Yeah!

Rebekah really seems to like being read to these days. I think she would be content with Mommy reading to her all day long. If only Mommy had the energy and ability to do that. Grandma A came over for several hours and read to her quite a while.

Friends Kathleen and Kevin brought us a scrumptious dinner. That was fabulous - Thanks Kevin and Kathleen! Sarah wouldn't stop eating.

It has been a pretty normal day, again. For the last few days, Rebekah has fought her naps and bedtime (which is par for the course). Last night, during the night, she was up and wanting Mommy several times. For a period of about 3 hours during the night, Mommy didn't sleep between Rebekah wanting her and then not being able to fall right back to sleep. Uugh! Hopefully tonight will be better. Needless to say, Mommy is a bit tired.

A Mostly "NORMAL" Day

It has been a mostly normal day. Aside from the medications, tubes, IV Pole, etc..., Rebekah has been acting like a 3 year old. We have cut way back on the medications, eliminating the anti-nausea medications and we are down to pain medication (as needed) and anti-anxiety medication (which may go away tomorrow). We need to be working on oral care, but haven't tackled that one in earnest.

Rebekah ate several bites of mom's oatmeal this morning, lots of ice chips throughout the day, some eggs and bacon for dinner and is currently sitting in her sister's high chair and eating ice cream. Gotta love a girl who loves ice cream! I think cold feels good on her mouth.

The sore on her lip is just about gone and the drooling has diminished greatly. Her shirt is all wet down the front, but most of that is from the ice chips. I think the pain in her mouth is mostly gone. She still has a bit of a cough, but the coughs are not followed by the screaming fits.

Sarah and Rebekah have been playing together. Sarah steals Rebekah's sock off her feet and then runs away with them, while Rebekah chases after her. Rebekah says she wants a blankie and Sarah goes and gets one and brings it close to Rebekah, but not close enough for Rebekah to get it. "Ha Ha", I can hear Sarah saying... Rebekah is trying to help show Sarah how to sign more. Well, I think you get the picture.

We have found someone to watch Sarah for us next week while we are in the hospital - thanks, Brandy! We're working on all the details of getting ready to go. There is always much to do and many things to coordinate. At least this will be a short stay, so we won't be gone too many days.

Blogger Problems

Apparently Blogger has been on and off line today for "maintenance issues". We are not going anywhere, we need you guys too much! Things seem to be back for now.

Rebekah has had kind of a back slide today. She is not too happy, acts like she is hurting and has been sleeping a lot. At the same time it seems like she is acting tired and needs more sleep. Another short phase we hope.

We are working on getting things together to get to the hospital over the weekend (maybe Sunday night) for an early morning admit on Monday to start her next chemo treatment.

Anonymous Thank You

Update: THANK YOU SUZANNE - Yes, Diapers, Tylenol and some toys DEFINATELY are a gift that is appreciated!

Thank you to who ever, anonymously, had a gift from drugstore.com delivered to us.  We’d sure love thank you personally but don’t have a clue who you are!

Continued Treatment and www.HelpRebekah.com

“The Queen” recently asked about chemotherapy and how long it will last.  It will last into next February at least.  Treatment of the side effects of radiation will last – well who knows how long?  We pray for no ongoing side effects, which would require a miracle.

And this brings up a good chance to draw your attention back to www.HelpRebekah.com.  It is a companion website to this blog and was designed to answer the question so many have, “How Can I Help?”  It also answers general questions about Rebekah and treatment, has some photos (more coming soon I hope) and tidbits not seen in this journal.  Please check out both sites regularly.

Our Little Girl Is Coming Back

Today was another good day. Rebekah seems to be acting more and more like herself. We've been cutting back on some of her medications, which may be part of it. I suspect that it is a combination of feeling better physically and fewer drugs (especially sedating ones). We are working to get her off the medications, but want to take it slow so that she doesn't have any bad negative effects.

Since Rebekah wanted to go Bye Bye so badly last night, we wanted to get her out of the house for a little while today. We all went with Daddy to "work" (which was fun to see) and did some shopping and ran some errands. We were out for several hours, but both girls cooperated with us for the most part. It felt good to get out and have some good times as a family.

Rebekah has been eating a little more the last couple of days. Between she and Sarah, they just about devoured a chicken soft taco today. She ate quite a few crackers, too. She wanted to drink from her sister's sippy cup. She was willing to give her sister her sippy cup for a trade. It is good to see her eating and drinking, even if it is only a little at a time. It is a BIG improvement!

She seems to be keeping her food down well, too. Between last Thursday's appointment and Monday's appointment she had gained an entire kilo (2.2 pounds). YEAH! Hopefully, we will continue to see weight gain.

Her counts are up and we don't have any more appointments scheduled for this week. Next week is the next round of chemo.

Let's pray that the improvement continues.

Tantrums and a Self-Directed Walk Outside

Yesterday was really exciting. Late in the day daddy responded to a medical call (for those of you who don’t know, daddy is a volunteer firefighter/emt). When he got back, Rebekah had wanted her tubes disconnected and was playing with Sarah on the floor. They were playing like “normal”. They were fighting each other over toys, pushing each other around, hugging each other and pulling each other around by the hand.

Then, Rebekah decided it was time to go "bye bye". All by herself she went and put on her shoes (ok, tried – getting the wrong foot in each shoe). She also got her hat and and put it on. Finally she went and got a jacket and tried putting it on. She also noted that Sarah needed socks and shoes (Rebekah had already gotten Sarah a hat). When daddy told her that we were not going anyway as it was night time she became indignant and headed for the door. Telling her she could go out by herself if she wanted to we opened the door and out she went.

Of course daddy quickly followed a few steps behind. She went down the walk and headed straight to the van pounding on “her” door. When daddy told her we were not going anyway in the van she turned and pointed to Grandma C’s car (that Grandma and Grandpa are letting us borrow). She was REALLY upset when daddy told her the car was not going anywhere either. Finally she walked to the mailbox and got the mail with daddy.

After coming back up the walk we told her it was time to go in. No go. Temper tantrums and more pointing to the van. Daddy said “okay, you stay out here by yourself then” and walked back inside (or at least she thought he did). After a short while of walking around in circles by herself she walked up the walk, pushed the door open and came inside.

Once inside she would not take her coat off and was throwing another tantrum. When mommy tried to help her Rebekah actually reached out and hit mommy which got her a “time out” until she took off her coat and shoes. After about 5 minutes she followed instructions. Rebekah then came over to her spot on the couch and got her tubes hooked up and ate as much crushed ice as we could give her. (Thanks to Grandma M for starting the crushed ice thing!)

If you are new to this blog you might wonder why an hour or two of typical child hood behavior deserves such space? Well, it has literally been months, many months since we have seen such behavior. To have her be able to play, to walk outside (which involves steps) and to engage in such behavior as to deserve a time out is WONDERFUL! It might not have lasted for too long, but for a very brief moment there were signs of life coming back to Rebekah and we were SO OVERJOYED.

It seems crazy, but please rejoice today when your child acts like a child. Rejoice for their good health and rejoice just because they can.

Now it is even more important that we get the final stuff in the van so that we can take Rebekah out more often and we thank those of you who are helping with that!

It's Monday

Not quite sure what happened to yesterday, but it was very busy.

Friend Allie had offered to come out with her daughter. That was awesome because we did not have any other help - or so we thought. Then Grandma M came, and later in the day Grandma A came. There were a lot of people that we did not expect but Rebekah loved it, playing with everyone. Rebekah was up and playing almost all day yesterday which is really really great.

In addition to all of the above, we had a visit from Joe, Anne and JJ as well as Rebekah's Aunt and Trustee, Molly. They came to tell us about a fundraiser that they have been putting together in the background. They are putting on a pancake breakfast at the High School in Banks on November 6th. Actually, they are helping Angela Kohama, a daughter of one of Rebekah's teachers/therapists who is doing it as a High School Service Project. We have had nothing to do with this but I understand that Angela is really doing a bang-up job!

Saturday Rebekah got more than the daily recommended allowance of calories for the first time in 3 or 4 months. Maybe that had something to do with her energy on Sunday? She is still throwing up but not as much.

Today all the girls (mommy, Rebekah and Sarah) are off to clinic. We expect that this will only be a quick check up so pray for good counts.

Rebekah still is not talking and has regressed with some of her signing. Please pray that she will "come back" a bit here so we can understand her. That would be less frustrating for her and for us.

Generally a Good Day

For the most part, it has been a good day. Last night started out pretty rough. Sarah woke up screaming and couldn't be consoled. She appears to be teething and seemed to have gas. Mom gave her medications for both. She still wouldn't settle down, even in mom's arms. So mom laid her down and let her fuss for a little while. It's never easy to do, but sometimes necessary. Rebekah didn't sleep real well. She woke up screaming several times.

Her throat is sore and every time she coughs, she is in pain. I set up a humidifier in her room hoping that it will help with her throat. Her mouth is sore and she's drooling.

Friends Connie, Melysa and Angelica spent several hours with us today. Rebekah really seemed to enjoy having them here. She wanted them to read to her and showed them her new room, of course. She was up and playing around and not complaining, unless mom told her no about something - can you say 3 year old. It was good to see her being herself. Melysa had several bracelets and Rebekah wanted to wear them. She was definitely expressing her desires. Gotta love those times! Thanks Ladies for your help.

A little later, Rebekah was sitting at her desk (which is in the living room and has her books on it) looking at some books and wanted Sarah to sit with her. The two of them sat on her chair at her desk. Sarah's nose was just about even with the desk, but they sat together for several minutes. Sisterly love shines through.

As Rebekah rested throughout the day, she would wake up periodically very upset. At least some (if not all) of the times were following coughing. It just breaks my heart. I wish I could "fix" it for her and make her all better.

She's been keeping her food down and getting more than her RDA, so that is a good thing. We may try to wean her from some of the anti-nausea medications and see how she does. Step by step... Hopefully we'll start to see some improvement in her weight. So far, she's been fluctuating but "holding her own".