Every Now And Then...

Every now and then, like everyday sometimes, we are so struck by something someone has done for Rebekah that we just break down in tears. Another example just happened. We might have been aware of this months ago but we don't know. If we were, we don't remember - sorry Deb.

A very regular commenter and supporter in so many ways, Deb from PA, placed a Rebekah Bracelet in a geo-cache as a special travel bug. We have never gotten into geo-caching but those that have absolutely love it. Today Deb sent us THIS LINK showing the history of Rebekah's Bracelet. Please check it out. THANK YOU DEB!

Check out www.HelpRebekah.com to get your own bracelet.

A Busy Day

It has been another busy day. Both girls were up about 9 this morning. I know that I'm pretty lucky that they sleep so long at night. Grandma A came about 10:30 to watch the girls so I could get out and get some things done (like a long overdue oil change on the van). After she arrived, I got a shower and helped get Rebekah into bed (she was asking for a nap) and then headed out.

I got the oil change, ran some errands for Scott, stopped in at my office (I haven't been there for a while and have been on leave since Rebekah was diagnosed with cancer) and did a little shopping. I was gone for 5 hours or so and it is always good to get out. Rebekah slept for most of that time. She must have been a tired little girl. When I got home, she was helping her sister eat. She is such a big helper and always looking out for her sister.

Grandma M and Aunt Molly and Uncle Chuck and cousin Cole came over to celebrate Cole's third birthday. We weren't able to make it to his birthday party earlier this week, so we had our own little party here. It was good to see them and have some fun.

Sarah went to bed late and Rebekah much later. Hopefully they will both sleep in. I woke up a little before 4 this morning (Saturday), then Sarah woke up and I went in to give her a binky back, and haven't been able to get back to sleep. After about an hour, I decided to get out of bed and "do" something. I've checked in on the other cancer kiddos and now I'm putting this update together. Maybe after all of this, I'll be able to get back to sleep. One can only hope.

I would like to ask for prayers for Kennedy and her family. She is a 5 year old who is fighting Leukemia. She is currently in ICU with Liver Failure and ZERO ability to fight infection. She is in Critical but Stable condition. Right now, they are treating her Liver Failure and her cancer treatments are on hold. The standard cancer treatments have to be processed by the liver, so they are not sure what they will be able to do.

Kennedy has always seemed to have way too much energy, so it is hard to imagine her in ICU. The best picture I have of her, is her riding her bicycle around the hospital hallways with her Mom chasing after her with her IV pole. It was hard for Mom to keep up. This family has really been on my heart lately. It is tough enough to have to deal with a child with cancer, but they have more than their share right now.

We wish everyone a safe and happy new year.

Lazy At Home Day Today

Today was a day to stay home and not do much. Grandma M came out this afternoon and stayed until both girls were in bed. That allowed Mom to do some dishes, laundry, reorganizing and actually cook dinner. Now, this evening, I've been sitting and relaxing and browsing several web sites catching up on some of the other cancer kids and learning about another one in our area who is just a little older than Rebekah. There are way too many kids with cancer! Each one has a touching story.

Rebekah has seemed to feel pretty well most of the day. She continues to sneeze and have a very runny nose. She has had way too many poopy diapers today and the diaper rash is a little worse today.

This evening, she wanted to go to bed about 6:30 pm, so we started getting her ready. It took about a half hour to get everything done (diaper change, into jammies, medications in her central line and into her stomach, good night hugs and kisses, etc...) and get her tucked in and ready to sleep. She slept just fine for about an hour and then was crying and half asleep. I gave her some pain medication, stopped her feeds and disconnected them.

A little while later she came out of her room asking for Grandma. We explained that Grandma had gone home. She wasn't happy about it, but accepted it. I told her that she could come sit next to me and snuggle and watch TV for a little while. So she did just that. It made me feel good. The last few days, Rebekah has wanted Daddy to do most things for her and was not happy when Mommy was doing anything. Today, while Grandma was here, she wanted Grandma to do everything for her. So, it was nice for her to want to sit next to Mommy and snuggle and rest her head on Mom.

More on Last Night

Mommy made a brief mention of a rough night last night.  I would like to expound a bit on something she wrote.  Rebekah REALLY wanted mommy to be helping her in the middle of last night.  She was hitting me and herself, and kicking me whenever I tried to come close to her.  She was screaming at the top of her lungs at the same time.  I finally lost it and broke down crying, begging her to let daddy help her.  When she saw me crying it was like a complete turn around.  She instantly stopped fussing and put her arms out to me.  When I came close she wrapped her arms around me and kissed me on the cheek.  

She then pointed to her changing table and signed “change” and asked me to carry her over there.  She unhooked her diaper and helped me put a new one on – then stopped me and started signing “owie” or “hurt.”  She pointed to the shelf above her where the diaper rash cream was and when I pulled it off the shelf she said “yah” and opened up the diaper I just put on her.  She then helped me walk her and her IV Pole back to her bed signed “night night” (tired) with me and laid right down and went to sleep.  

The whole while she was more calm, more mature than any four year old I have ever seen.  This little girl has such a beautiful mothering instinct in her.  All it takes is for her to see someone hurting and she instantly puts all of her own pains aside to help them.  She is SO beautiful.

Home For Now

We spent several hours in the Emergency Room with blood cultures, blood counts and antibiotics. Her counts were still rising, so we were able to go home (arriving home at about 3:30am). Rebekah woke up about 6 and mom had to check in on her and then both girls were up by about 8:30. Grandma A came about 9 and helped watch both girls, so mom could try to sleep a little.

Rebekah had to go back in for another dose of Antibiotic at 2, so mom couldn't rest too long. Grandma A took Sarah home and kept her Tuesday night. Dad took Mom and Rebekah to the hospital and then headed into court. While at clinic, we were able to visit a little with Josh and his mom April. They were frustrated and still hoping to go on a little vacation with the family, but not sure if they were going to be able to. Rebekah got her dose of antibiotic and the blood cultures weren't growing anything, yet. Then mom and Rebekah went to visit Kennedy's parents.

Kennedy is in ICU and she and her family could use your prayers. With us being sick, we were not going to get anywhere near Kennedy herself, but we wanted to let them know we were thinking about them and praying for them. We were able to talk to Kennedy's dad for a little while. Kennedy is apparently doing a little better, but doesn't look very good. They seemed to be holding up ok.

After clinic and court, Mom, Dad and Rebekah did some shopping (Christmas exchanges) and then had dinner with another Christian Attorney and his family (Mark and Monica and their two girls who are close to Rebekah and Sarah's ages). It was nice to have a "normal" dinner out with new friends. The first 10 minutes or so of the ride home, Rebekah was inconsolable. I'm not sure why, exactly, she was incolable but she finally settled down and fell asleep for a while in the van.

My (mom's) cold is still pretty bad. I've been taking medication for it and trying to get as much rest as possible (which isn't really that much), but it isn't helping much. Rebekah woke up at about 5 this morning and when I went to get her some medications, I felt terrible - like I was going to throw up or pass out. I sat down in the kitchen for a few minutes, but Rebekah kept hollering "Mama" from the other room. I got myself up and walked into her room with the syringes of medications, but didn't feel any better. I went back into bed and woke dad up to give her the meds. Rebekah wasn't real cooperative with him, but finally decided to help him and then things went much better. I'm feeling a little better now, but not much.

In a little while, I will take Rebekah to Grandma M's house and then go see the dentist for a cleaning (that will be fun with this cold - but it has to be done) and then pick both girls back up and come home.

The week is kind of "in the air". If the blood cultures start showing anything, we may need to go back in for a different antibiotic. That could mean a clinic trip, ER trip or admission. Our appointment for Thursday was cancelled, since we got her counts Monday night/Tuesday morning. If she gets another fever (above 100.5), we will need to call and see what we need to do. We can't plan too far ahead this week. Such is our life!

A Midnight Trip To The Hospital

Well, we put it off long enough.  Another phone call to the doctor and the 11:00pm news just started as mommy and Rebekah drove off to the hospital.  At this time of night they should make it there around midnight.  Rebekah’s fever has continued to rise and she has continued to throw up.  This is just not a change in her immune system – something is actually going on.  She will go into the Emergency Department (Emanuel has a special Pediatric Emergency Department).  Upon arrival she will get blood tests and a general broad spectrum antibiotic.  Depending on the result of the blood tests she may get more antibiotics, be admitted or be sent home only to come back tomorrow (today?) for more antibiotics.  This is the not so fun part.

Sarah and daddy are staying home and Grandma A will hopefully be able to come out in the morning so daddy can get to court for clients finalizing their adoption tomorrow.  If Grandma A can’t make it and mommy and Rebekah are not home we may have to try and get a car seat into daddy’s truck and Sarah may get to go to court!  

Keep your prayers open for us please.

Quick Monday Update - MAYBE more later

Just a quick Monday update.  Rebekah’s fever has continued and crept up just over the borderline of safety.  We have had a phone call into the doctor who kind of gave us a choice to wait a few more hours or come in for a 48 hour (at least) stay.  We are not seeing any major signs that scare us right now so we decided to wait a few hours and see what happens.  That could be dangerous or it could avoid a trip, only time will tell.  Rebekah is, however, really acting fussy and bothered.  She is being even more “particular” than normal and everything has to be exactly her way or there are lots of screaming and crying.  That is getting old in and of itself.

Grandma C came over to play with the girls a little bit this afternoon and gave mommy a short break – now if we can get mommy about 36 hours of break!  Grandma C brought some Prime Rib – yeah for Grandma’s.  

We do have some pictures and are hoping to get them up shortly.

Merry Christmas

Merry Christmas.  We are hoping that you have all had a wonderful day with friends and families and have had the ability to enjoy the day as well as all the riches that have been lavished upon us.

Last night my mind was so full of what this day has turned into.  Mommy said that the tree was full of gifts.  “Full” was about 9-10 presents and they were almost all ones that others had brought to us and/or the girls.  There was very little from us.  To borrow a phrase from some friends who are also in financial straights, it truly is liberating.  It’s really weird but in many ways it allowed us to focus on enjoying each other instead of days and days of shopping, wrapping, worrying about the right thing, etc.  We hope that our family is understanding as they received pictures of the girls and home made trinkets made from tracings of the girls hands and with the girls.  I think there is truly a lesson in there.  

We did receive an email that someone wants to send us a gift next week and some others gave some spending money as gifts so it will be really nice if we can go find something nice for us.  

Now don’t get me wrong.  We were blessed beyond measure with our friends and families getting the girls (and us) SO many presents.  Our neighbors across the street brought over gifts for the girls and early this morning a “butter pastry” that was spectacular.  Other friends had spent the week getting things for the girls, etc.  We got way way way more than we ever could have imagined.  Mommy is still trying to put things away, wash things and most difficult, find places in the playroom for all the new toys.  

Yesterday was so wonderful.  Rebekah seemed like she was normal again.  She played, she laughed and she even sat with us at the tables during meals.  She didn’t eat but it was so wonderful.  Unfortunately today was a pretty drastic turn around.  Rebekah was upset from the moment she woke up and very clearly hurting.  On top of everything else she has a cold and has gone through more than two Kleenex boxes of tissues.  She has been screaming constantly and just about nothing we could do would make her happy.  This afternoon at Grandma M’s she just wanted to go to bed, then get up, then go to bed, etc.  She wouldn’t even open any presents and just screamed “no” and cried anytime anyone tried to talk with her.  Then she fell down and scratched her head up pretty good and that just made a bad situation worse.  When we got home she didn’t want to do anything but sit on the couch and have her tubes hooked up.  About bed time she said she wanted changed and then mommy took her to her room and she started screaming and throwing up all over everything.  We are afraid of what the night will bring.  And, to top it all off, mommy is getting pretty sick again.  She is worn out and has a cold so bad even thinking is difficult sometimes.  

Please pray that Rebekah has a good night and good next week, that Sarah’s cold doesn’t get any worse and that mommy feels better so she can keep everyone together.  Please also pray for so many of the other kiddos that we know that are in the hospital, having insurance problems, fighting with side effects, etc.  We feel so lucky to be doing “as good” as we are.

Merry Christmas Eve

Rebekah is now at her second stop of the day - at Grandpa's. She is doing very well and we are so SO grateful.

Daddy's thoughts are very full right now and I will try and share them with you shortly but for now - Merry Christmas and may this Christmas be very special to you and all of your families. In all of the stress that goes along with traveling here, traveling there and being with all of your friends and families please sit back, relax, let the worries go away and cherish the joy in each of your children's eyes as they innocently enjoy the holiday.

Counts are Up, Antibiotics Given

Rebekah's counts were up today. Her White Blood Count was into the normal range. From Critical on Wednesday to Normal today - thanks to the daily shots. That means that she doesn't need any more shots for this round and she now has some ability to fight infection. She still shouldn't be around sick people, but she doesn't have to be isolated. As long as the girls are doing ok, we should be able to make the Christmas celebrations.

Also, with Rebekah's White Blood Count up, she now has some ability to heal her bottom on her own. Her rash is doing better, but still has a ways to go. Her stools are more normal now and she is doing a good job of telling me when she needs a change.

She continues to throw up periodically. She's been coughing, sneezing with lots of snot, and complaining of owies. She does seem to have quite a bit of energy.

While at clinic, we checked to see if we could get her antibiotic today. Wednesday, Day Treatment was too busy to do it, but today they were able to. So we stayed for the extra two hours to get it done. She needs it once a month (somewhere between 3 and 5 weeks) so I didn't want to put it off too long.

While in Day Treatment getting her antibiotic, she was indicating that she was hungry. So, I gave her some bolus food. I didn't give her much (about 1/4 cup) and she started throwing up. Uugh! All over her and her blanket and everything. What a mess! Time to change her shirt and get a warm hospital blanket. After that, she did take a nap, which was nice. She probably needed it.

Grandma M watched Sarah while Mommy and Rebekah went into clinic and Daddy got a lot of work done. She and Sarah worked on sorting through the girls toys. I don't know how much fun it was for Sarah, but she didn't seem to mind it.

Friends Crissy and Josh and their little one Jessika stopped by and brought some Christmas presents for the girls. Jessika is just about Sarah's age. That was very thoughtful and generous of them and we appreciate it. There are quite a few presents under the tree and most of them are from the generosity of others, for which we are very thankful.

Merry Christmas to everyone. We have so much to be thankful for. God loves us and sent his son for us. May you all have a wonderful Christmas full of love and family.

Another Day

Rebekah's diaper rash is a little better today. Her temperature is still borderline, so we are keeping an eye on it. She's not sleeping real well at night, so I'm lucky if I get 4 hours straight to sleep. Makes me pretty tired.

She slept for a few minutes on the couch this afternoon and then a little later fought going down for a nap (however she really needed it and Mommy wouldn't let her up).

She continues to have a bit of a cough which irritates her and can make her want to throw up. She threw up a little after dinner, but has otherwise been tolerant of her food. I think her stomach was feeling too full and caused the upset. She continues to be upset when I give her bolus feeds and I hope that she begins to accept them without the struggle.

Friends Sandy and Maurice made us a very nice dinner which friends LaDonna and Royal dropped off along with a nice gift. It was a wonderful surprise. We are so thankful for wonderful friends like Sandy and Maurice and LaDonna and Royal. LaDonna stopped by earlier this week with gifts from her family and work.

Rebekah wants to be such an independent little girl. As an example, she wants to wipe her own nose after getting the tissue out of the box herself and then she wants to throw the tissue away all by herself. She is pretty frustrated that the kitchen cabinet with the trash can is locked (for safety reasons) and she can't get into it.

When Daddy was making himself lunch, she was pretty sure that he needed a fork and she was determined to get one for him. Daddy already had one and that got her upset.

Rebekah has been clumsy the last few days and gotten a number of bumps. We have a couple of gel freezer boo boo pals to put on the owies. They have become her friend. She constantly wants one for her boo boo. I almost think that she will make up an owie if that means that she could have the boo boo pal. They sit on her lap as much as they are actually on the boo boo.

Sarah has had a bit of a runny nose and cough the last few days. Not really what we want, but can't help it. She's been getting medicine for that.

We continue to pray that her appointment goes well tomorrow and that her counts are starting up, so that we can discontinue the daily shots. We'll have to see how her counts are doing to make decisions about Christmas celebrations.

No Transfusions, Another Appointment Friday

Rebekah's Hemoglobin and Platelet counts were doing ok today, so she didn't need any Red Blood or Platelets today. Her White Blood Count, however, was low (as expected). She really needs to be isolated - good thing she is done with her Christmas Shopping!

The Nurse Practitioner that she saw today, suggested that we come back on Friday with the hope that her White Blood Count will be on its way back up by then and we will be able to stop the daily shots. The clinic won't be open again until Tuesday and by then we would expect her White Blood Count to be pretty high. (The last time she had this set of chemo drugs, her counts were really high by next Monday.)

When her White Blood Count gets real high, she can have bone pain and we don't really want to put her through that if we can avoid it - although it would be hard to know IF that was her problem. I've probably been told about the bone pain before, but it hasn't sunk in. We don't expect to need Red Blood or Platelets on Friday, but we never know.

Also, this week or next she will need to get her IV antibiotic. The Day Treatment center was too busy today to do it.

Her bottom continues to be very sore and raw in some areas. This can be a very high risk for infection. Not only that, but an infection caused by the bacteria in the GI Tract can be very serious. Any fever at this point means an automatic 48 hour or longer hospital stay. They would want to start antibiotics immediately and it could be life threatening. The Nurse Practitioner suggested that we soak her bottom in the tub for a little while each day. She wanted nothing to do with that this evening. Maybe we will have better luck tomorrow.

Meanwhile, her stools are getting more firm - no more diarrhea. Let's hope that will be better for her bottom and that they don't get too firm - another potential problem.

Before her appointment today, I stopped at the pharmacy to get a refill on her "butt paste" - a special blend of anti-yeast, desitin and other products that the hospital makes. The tub that I got last Saturday was used up in 2 and a half days (too many diapers and too large an area). Anyway, I asked if there was any way to get two tubs. They said that they would need to contact the doctor to get approval for it. When I was at clinic, they had signed it and faxed it down. When I got back down to pharmacy, they were pulling it off the fax and getting it ready, so I had to wait. Then, the insurance company denied it because it was supposedly a 10 day supply. Uugh! They were going to call the insurance and see if they could get it worked out. More waiting... Finally, they got it worked out and I was able to get two tubs and another over the counter diaper rash ointment (calmoseptine) that does a good job as a barrier and is difficult to find. I figured that I needed to make sure that I had plenty of good ointment to last past the weekend.

Before clinic, we stopped in at the School Age hospital ward where Rebekah usually is. We had left a christmas ornament in the room last time and I wanted to know if they had found it. They looked around and couldn't find it. When I got home and checked the mail, it was there. Nurse Ron found it and mailed it to us. That was such a blessing. Sometimes it is the "stupid" things that can really make me upset and this was one of those things. It was good to have it back.

She was feeling pretty warm tonight before bed, so we checked her temperature. Her forehead temperature was 100.3. It runs a bit higher than an armpit temperature (which seems to be the standard), but anything over 100.5 should be a call to the doctor. Please pray that the temperature decreases so that we don't need to worry and rush to the hospital.

We are continuing with the bolus feeds, but she is objecting to them. She, for the most part, seems to be physically tolerating them, but does not want them. She wants to use her pump. I have been explaining that she only gets the pump at night. If she is hungry then we can give her "quick" food (as in a bolus). She is definitely not thrilled with the idea. But since she seems to be tolerating it, Mommy is trying to be consistent with that. We'll see how well it continues to work.

She is also having to get used to sitting at the table with us at meal time. She will have a plate in front of her and might sample from it, but she needs to sit and be social. She did pretty well today with sitting at the table, but does get impatient (she is, afterall, 4). At the end of the meal, she gets her bolus feed. Poor little girl, lots of new rules to get used to.

We continue to hope and pray that Rebekah stays out of the hospital, that her diaper rash goes away and the temperature stays down, that everyone stays healthy so that we can attend the different Christmas celebrations, that Rebekah continues to handle the bolus feeds and takes in more orally so that we can work on getting away from the feeding tube.

Tuesday Evening

Rebekah didn't sleep very well last night. She threw up at midnight and then again at 5:15. Both times, she wanted her nutrition to be continued. After the second episode, she wouldn't go back to sleep for over an hour. She kept calling for Mommy. That made it pretty difficult for Mommy to get much sleep.

With the way Rebekah has been eating bites here and there and actually swallowing some of them without problems, we have some thoughts of trying to get her back to eating. We know it will be a slow process, but think it might be time to start working on that.

With that in mind, we wanted to start getting her stomach used to larger amounts (instead of the constant stream of nutrition from the pump). So, throughout the day, we gave her bolus feeds (larger amounts over a few minutes). We are starting out slow and allowing her to have the pump feeds over night to make up the difference. Each day, we will try for a little larger amounts until she can get enough nutrition in during the day and not need the pump at all.

Meanwhile, we are trying to sit at the table during mealtime and have food in front of her and encourage her to eat. At lunch time today, she wanted part of her sister's peanut butter and jelly sandwich and ate a few bites. At dinner, she wouldn't touch her plate. It is nice to have the table usable again, so that we can try to be social and work on eating.

Her diaper rash continues to be really REALLY bad. I am keeping it as coated as possible and being diligent in changing her diapers whenever they are dirty. She has been doing a very good job of telling Mommy when she needed a change. That has been very helpful. I worry that her diaper rash can cause an infection causing a fever, so it is really bothering me that she has such a nasty diaper rash.

Her temperature has continued to go up. It isn't yet to the point of being admitted for fever, but I am concerned about it. Please pray that the diaper rash heals quickly and that there are no fevers.

It has felt so good to have some semblance of order in the house. Having the Christmas Tree put up and furniture moved to where it is supposed to be and then getting the dining room back to usable is just HUGE to my emotional well being. The house is not totally put together, but each bit of improvement is good.

Tomorrow Grandma M will come and watch Sarah while I take Rebekah into clinic for counts. Doc said late last week that he thinks Rebekah might need Platelets, but doesn't expect her to need Red Blood with the transfusion last week. As always, we will have to wait and see. At least Platelets don't take as long to receive as Red Blood. Please pray that the appointment goes well.

Rebekah is not cooperating with going to sleep tonight. She is crying and asking for Mommy and Daddy. So far, we've been pretty patient, but I don't think that will last much longer. She has been given some medications to help with coughing, pain and stomach upset. Those should be kicking in shortly and hopefully the sedative side effect of them will start to do its thing.

Monday - But A Good One

Today was Monday and like many Mondays it was hard to get started.  Note that it was not hard to get up – mommy was up from about 3:45am on.  Between the girls and just not  being able to sleep she was up.  However being up is not the same as getting started.  Once daddy got off to the office (20 feet away) and breakfast was made things kind of got started.

The girls did well playing together and were really excited about our visitors Jill and Dave Renton and their two boys Will and Patrick.  Will is a Leukemia survivor for a year now – AWESOME!  It was nice to be able to spend some social time just talking with someone who understands what you are going through.  It was nice to have social time period!  That was on top of a phone call that daddy received earlier in the day from someone who wanted our address so they could send us “a little something.”  In talked with them we found out they were a cancer survivor and had picked up one of Rebekah’s cards at her pancake breakfast and she had been on their mind for a while.  

After Sarah went to bed Rebekah was getting really cranky.  Mommy wanted her to go to bed and Rebekah was pretty sure she didn’t want to.  Daddy had a talk with her about being cranky, fussy, screaming and crying.  He talked with her about how those were signs of being tired and needing to go to bed and that if she wanted to stay up for a while longer she should sit up and act like a big girl stopping all of the tears and fits.  They INSTANTLY turned off and she became a beautiful little lady sitting on the couch and being very nice.  

Then mommy brought over her medicine including shots and she started to throw a fit until daddy reminded her about being a big girl.  She wasn’t happy about it but she went through like a trooper.  She didn’t even scream and cry over her shot and when given a choice as to whether mommy would hold her or she would bend over herself she laid right down and even tried to pull up her pant leg so daddy could give her a shot in her leg instead of her arm.  She then got up and went to bed nice and calm – at least relatively.  We were  so proud of her trying to be a big girl.

Unfortunately her temperature is starting up and her diaper rash is getting pretty bad.  Either of these things have the possibility of landing us back in the hospital at any moment.  Please pray that we remain home and safe and sound.  

A Snowy Home

Yes, we are home and it is wonderful.  We got home about 4:30 yesterday (Saturday) evening.  What a delight to come home to a newly painted living room all decorated for Christmas complete with Christmas tree and all.  THANK YOU SO MUCH to Grandpa from bringing the tree and for Mike and Tara Shannon for decorating.  They told us it was “a little thing” but there are no words that can express how much delight in these “little things”.  Mommy was just about in tears as she thought we were not going to be able to have a Christmas tree or even find time to decorate.  (Daddy wasn’t too surprised as he kind of had to be in on it.)

Rebekah and Sarah both had rough nights.  Between the two of them I think we were up every couple of hours.  At least today went a lot better than last night.  Grandma M came out and stayed most of the day helping with the girls while mommy and daddy got the rest of the furniture put into the living room.  With the new paint and different furniture in different places its like a new house – but it is still our house which makes it nice to be home.  In fact we actually found our kitchen table.  That may not sound like much but it has been more than 6 months at least since we have been able to see the table.  With all the coming and going, in and out, the kitchen table has accumulated all of our “junk” that we don’t know what to do with and it has sure piled high.  Tonight Karen, Dave and Ian brought dinner and we were all able to sit down together – like a family.  It’s strange to say, but that is really nice and we have really missed it.  

As if things weren’t already a fairy tale day for us, about 2pm the snow started.  The weather guessers have been saying freezing rain tonight/tomorrow morning but nearly all of them have barely (if even at all) mentioned any possibility for snow.  We have had about a 2” coating of beautiful white stuff.  Looking out the living room window through the Christmas tree and its lights and seeing the snow has been relaxing.  The wood stove has been going and creating an nice warmth and our hearts have been warmed by the visits/help today and getting things put back together in the house.  

Pray for a good week as the weather is supposed to turn real bad with freezing rain/ice and we don’t want to have to try heading to the hospital the next couple of days if we can at all avoid it.

Friday Night

Daddy had court today and lots of errands so he did not get back until mid afternoon. Rebekah had therapy appointments (speach, physical, occupational???) all afternoon so I didn't get to see her until dinner time. I went over there at about 4:00 and mommy and I were talking about going to dinner downstairs in the cafeteria - that is our idea of a hot date. Mommy asked "do you want to go downstairs to get something to eat?" and before I could say anything Rebekah started yelling "I DO I DO..." It was cute - she came with us.

Unfortunately the cafeteria was closed (or at least all but the fried food counter) because they were doing a Christmas dinner for the staff in another part of the hospital. Can someone please explain to me why its okay to close the public cafeteria so they can feed the staff???? It worked out though - after I "discussed" the situation with the food service manager we were invited to join the staff meal. It was actually nice. They had a really good jazz band playing and Rebekah and daddy got to dance a little bit. I was a bit embarassed as it seemed everyone in the place was watching us. Oh well.

Rebekah had some throw up problems today and her diaper rash is really really bad. We are using some mud-like ointment with lots of antibiotic/anti yeast stuff in it. Other than that Rebekah was really fun and energetic today. That is why we were thrown for a loop after dinner when the nurse came in and said Rebekah needed blood as her counts were already down. That is kind of scarry to us because I don't think they have ever been down this fast. We are not sure what this will mean for us leaving tomorrow. Only time will tell.

She got to go "Shopping" with the people from make-a-wish. Her physical therapist took her and she got to pick out gifts for her immediate family and then they wrapped them for her. This will be interesting come Christmas morning as I think those are the only gifts that we have right now. Apparently they choices were too much for Rebekah and her therapist had to pick out three things and then ask Rebekah which of them she wanted for each of us. The word that we got was that her only answer was "yah" and she wanted all three...

The prize of the day was a stocking for Rebekah that came fully stocked with toys and fun. The toys and fun all got poured out and the stocking itself, which Rebekah calls "boot" was the enjoyment:

Fatihful v. Boring and Repetitive

OK OK OK – Just to set the record straight.  I LOVE monogamy.  I detest monotony.  I am glad that you all have had fun chasing this one around.

If you don’t know what we are talking about see Wednesday December 14th’s post from Daddy.  

www.HelpRebekah.com updated

Just a quick note to let you know of some updates at www.HelpRebekah.com.  There is a new news article and LOTS of new wonderful people and organizations added to the With Gratitude page.  Check it out and if you know any of these people please give them very sincere thanks.

Tired...

Wow what a day.  I first have to say that mommy and daddy are now OFFICIALLY tired of being in the hospital.  Maybe its taken the 5 days we have been here already this week, maybe it’s taken the 9 months that we have been spending regular time here – I don’t know but we are tired of it.  

Rebekah, on the other hand, knows everybody, loves everybody and enjoys the attention.  Obviously she is hurting and not happy about that but if you bring somebody into her room to play with her, work with her or take her attention away from where she is she loves it.  Today she got to go downstairs to the cafeteria with mommy and daddy for some lunch and then got to go to the family lounge with mommy and daddy and friends Karen and son Ian who brought some pizza for dinner.  Take Rebekah out of her room and she’s happy.

The Dunham’s who are regularly taking care of Sarah had a concert in Portland to go to tonight.  They brought Sarah to us to take care of this evening while they were out.  Boy did they look good all dressed up!  You would think that taking care of Sarah and providing our vacation in Sunriver would have been enough but no.  This week we started getting some paypal donations on www.HelpRebekah.com from Brush Prairie, the small community where the Dunham’s live.  Then tonight Debbie brought in cards, gifts and donations – LOTS OF DONATIONS.  Again, just when needed.  With the exception of the Dunhams they are ALL strangers who have never met us.  How wonderful they are!!!!!

It hit me tonight as I was walking back to the trailer that there are so many of you that read the blog, make comments, make donations etc. that you would think we would not be alone but in many ways we are alone, or at least lonely.  These contacts online keep us going but it would be really really cool just to have people stop by the house, stop by the hospital etc and spend some time.  To take that a step farther (and more important)  please take this away from us and to those that are in need around you wherever you are.  A phone call is better than nothing but what is really great is some personal contact.  If you know someone who is elderly, overwhelmed with kids or in any other way “shut in” please go see them.  It could be stopping by for coffee and conversation, a game of cards, or watching a TV program with them. Even if its just for 30 minutes it will really go along way towards lifting the spirts of those in YOUR community that are in need of some social time.   

Midweek Update - From Daddy

Here we are about ½ way through another full week stay.  What is important is that this is our next to last full week stay – at least as far as planned things go.  

I am sorry that I have been absent from the updates for awhile and the “burden” if you can call it that has fallen on mommy to keep you up to date.  Basically I have been gone to spare you the reader from more negativity.  I have been really upset/depressed/negative about treatment lately.  I think that the accumulative effect this is having on our lives finally caught up to me.  Hopefully this will be a turn around for me.  

Notwithstanding the HUGE pile of files I have in the trailer to work on, I got to spend two meal times and visits with Rebekah and mommy today.  Even though she would not/could not eat, Rebekah wanted to come to the Candlelighters sponsored lunch with mommy and daddy and wanted to have her own plate, sit at the table, etc.  It is the little things like having a lunch provided that really help the parents break up the monogamy of a hospital stay.  It is the BIG things like having Rebekah want to come with us that gives us great joy.  

This evening Grandpa came and walked with Rebekah and the physical therapist.  When I went over for dinner they were out in the halls walking and I had to walk around quite a bit to go find them.  When Rebekah saw me she ran (as best as she can) down the hall to see me.  Grandpa and the therapist had to take some pretty brisk steps to keep her IV Pole and themselves up with her.  Just hearing Rebekah shout “da da” was pretty awesome music to my ears.  Once back in the room Uncle Chuck brought mommy and daddy some Bento Chicken Bowls for dinner – that was nice.  

I was finally able to speak with the head of housekeeping a second time today.  I was floored when he said that he found out where the breakdown was earlier in the week.  In fact I think his exact words were “we dropped the ball.”  It turns out that the dispatcher for housekeeping initially paged the wrong person and then ignored later phone calls because s/he had “already dispatched someone…”  It was SO refreshing to actually here someone take responsibility for something.  We just hope it gets “fixed” so that no one else has to go through this particular problem.  And for those of you who know me you will find it quite surprising that the head of housekeeping actually said to me “I am sorry this happened but honestly I can’t believe you have been so calm about it…I am a father too and I would not have been as calm as you are.”  Frances says its because I didn’t have to stay in the dirty room…

As we get somewhat close to the end of this chapter, this part of our treatment we are more and more conscious of others coming in.  Our hearts break for every new face that we see.  We somehow, someway want those coming after us to have an easier time than us.  We don’t know exactly how to do it but that is what we want.  And while I am on that, please add “Craig” to your prayer list.  Craig is a 12 year old newly diagnosed leukemia patient that we met today.  Our hearts go out.

Finally let me thank ALL of you for spreading the word about Rebekah and for keeping up your visits.  We have even received a few donations at www.HelpRebekah.com which had been basically non existent for several months.  As we think about having to start out of pocket on our medical bills again in January this is greatly appreciated.  

Pretty Uneventful Day, Many Visitors

Not much new today. She hasn't thrown up in a couple of days and her nutrition was going all day today. Now she says she wants it off. And she changed her mind, again. After all, she is a four year old. While she is in the hospital receiving chemo, they keep her up on Zofran to help with any nausea. I fully expect to have vomitting issues, but pray they don't happen this time. She would't eat anything today, but she did take many of her medications in her mouth.

Her stools are still loose, but not really watery which is an improvement. The diaper rash is mostly gone and we're using the desitin to protect her from problems instead of to help her heal. The chemo is expelled in the urine and can be irritating. They always keep her up on fluids so that none of the chemo sits in her bladder for very long. And they give her a medication (Mesna) to help protect the bladder against the chemo.

Joshie's mom, April, stopped by and brought us some chocolate. Thanks April! Candlelighter's brought lunch and had it in the playroom for any of the cancer families that were in today. So we went over there with April. She felt funny being there without Josh. It was nice to chat with her for a little while.

Later, Madeleine and her mom and brother stopped by for a visit, on their way to an appointment. They brought a little gift for Rebekah and one for mom. It was very thoughtful of them.

Both Josh and Madeleine are past treatment and dealing with the effects of treatment. Seeing both of them reminds me of the fact that, although treatment is coming to an end (after another 2 rounds of chemo), that really isn't the end. There is always more to come. Rebekah's issues will be somewhat different from Josh and Madeleine, but there will be issues. We are already seeing that with her eye and her eating.

Uncle Chuck stopped by and brought us dinner and then took Rebekah out for a wagon ride. Thanks!

Grandpa stopped by this evening and Grandma C stopped by this morning and then again this afternoon while we were playing Bingo and out of the room.

At 6:30 or so, we took Rebekah out for a wagon ride, only to find out that there was a fire alarm and the doors were shut. We couldn't really go anywhere. Uugh! Rebekah was not at all happy. Luckily it ended shortly before Rebekah's chemo ran out and she needed the nurse (who was on the other side of the door). She would have come, even if still in alarm, but was glad it was over before she needed to come.

After Rebekah's late (and long) nap yesterday (5-8pm) she didn't go to sleep until after 12:30 this morning. Uugh! Today, her nap was a little earlier and I'm hoping she will go to sleep earlier. Although, it is already late and she's showing no signs currently of wanting to sleep. And she was given both tylenol and benadryl a little while ago. Maybe they haven't set in, yet... Mom can hope.

Tuesday Evening

Well, there isn't a lot to report. It has been a pretty quiet day. No throwing up, no major mishaps, housekeeping finally showed up at 9:45 this morning to clean up the mess (and clean the entire room at the same time).

Chemo is scheduled to start at 8:00 pm tonight - 1 hour earlier than last night and then at 6:00 pm tomorrow night. Shift change is at 7:00 and the chemical given during the first hour can be problematic for anaphylactic reactions, so they don't want that during shift change when all the nurses are busy. Also, they don't want to move it any more than 2 hours earlier because it would be much harder on Rebekah, so 6:00 pm tonight wasn't a possiblity. At any rate, we have a game plan and it is working to get us out of here earlier on Saturday. We were not looking forward to a 9:00 pm discharge.

Over the last few days, Rebekah has been eating a little. Sunday, she actually had a couple of bites of cake and a couple of bites of ice cream at her birthday party. It had been weeks that she hadn't eaten anything. Today, she wanted some of Grandpa's potato chips. Throughout the day, she munched on them. And she ate 3/4 of a popcicle, too with the speech therapist. That is more eating than we have seen since the middle of August. Let's pray that she continues to eat more and more. I would love to have her eating on her own and not need the g-tube. I know it will take a while, but improvement is GREAT! I hope for continued increase in eating without any setbacks.

She has played with Occupational Therapy, Speech Therapy, Art Therapy, Music Rx and Child Life as well as Grandma C, Grandpa, Dad and Mom. She went for a wagon ride and she has generally been pretty content. She is sleeping now and I'm sitting in the dark because she wanted all the lights out.

I continue to be emotional, but that is what we women do, isn't it? It is movie night, so I'm going to run and see what kind of chocolate is available. Chocolate is always good.

Monday Night In The Hospital

I'm going to make this brief, because I'm tired and crabby, I have a daughter who is screaming at the moment because mommy is not letting her have her way and it has been a long day.

Her counts were good enough to be admitted. The hospital ward is full, so they put us in the "isolation" room. This room is small, no room for a rocker chair, and no shower. When we got here, there was a regular adult bed in the room instead of the toddler bed that we usually have, so we had to wait for that to be switched out. They put a blind on the window in the door a month ago, which was broken when we got here. The sink in the ante room doesn't work. The internet connections in the rooms are not working, so I have to use dial up. I can receive email, but I have to go through a bunch of hoops to send email. At 3:00 this afternoon, Rebekah threw up all over everything. We called for housekeeping and they still have not been here.

This morning, at clinic, the Oncologist and I discussed the eye procedure scheduled for this afternoon. They were planning to do it in the room using Versed and Fentanyl. I didn't really think it through to realize that she needed to have an empty stomach and had been feeding her throughout the day. After I got Rebekah cleaned up from throwing up, the Social Worker told me that she was supposed to have been without food. Uugh! She was checking with the eye doctor to see if he was still willing to proceed. We went ahead with it.

The exam went reasonably well. Rebekah cooperated mostly and the doctor was able to do most of the exams that he wanted. The good news is that there really isn't anything that needs corrected immediately. The tear duct can be corrected later, probably after chemo is done. We need to watch for signs of infection, but otherwise it can wait. We know that we will need to have an ongoing relationship with the eye doctor, because of all the potential issues from the radiation.

Chemo wasn't started until 9pm tonight. It needed to wait until after the eye exam and then it was the middle of shift change, so they put it off. Usually, they will try to start each days' chemo 2 hours earlier than the day before, so that we can leave earlier on Saturday. However, 2 hours earlier puts it right at shift change, so I don't know what will happen.

It has just been one of those days where nothing seems to be going well and I've been in tears several times.

At The Hospital, Ready for Chemo

We are in the camping trailer tonight in the hospital parking lot.  Tomorrow morning we go into clinic at 10 am and should be admitted as long as Rebekah’s counts are doing ok.  She hasn’t failed counts to start Chemo, yet, but there is always a first time.  

It has been a busy weekend.  Saturday morning we had a group of about a dozen people come to help paint the living room, hall and the trim boards for around the floor in the playroom.  They showed up about 9.  Mom was madly trying to finish getting things packed and get all the girls out the door, so that we weren’t in the paint fumes (and the girls weren’t into trouble in the paint).  It was about 10:15 by the time we got out the door and they were already painting in some areas.  

Daddy tells me that they got the painting done, and the sectional couches moved around.  The couch that was in the living room was moved into the play room.  We had been storing another couch at our friend’s (the Olsen’s) while we were waiting to get the room done.  And with the help yesterday, they were able to get the pieces back to the house and set up in the living room.  A BIG thank you to the Olsen’s for storing it for us for a really long time.  He tells me that the play room seems much smaller and the living room seems much larger.  I won’t see it for another week, so I’ll have to take his word for it.  Another BIG thank you to the Helping Hands group of Our Place Church who did the painting and furniture moving.  It is such a blessing to have that done.

After leaving the house, I dropped Sarah off at Grandma A’s and switched the car seat from rear facing to forward facing for her and got it sized for Sarah.  She is such a growing girl!  Then Rebekah and I headed over to Grandma M’s.  We settled in and trained Grandma M on some of the care for Rebekah and then I headed out to do a little shopping.  I figured that I better take the opportunity while I had it.  This week we’re in the hospital and next week Rebekah’s counts will be low and then it is Christmas.

Today, we celebrated Rebekah’s birthday with family. It was a good party with all the cousins and aunts and uncles and grandparents.  A little crazy with all the people and naps were delayed.  It was after 4pm by the time I was able to get the girls to sleep, after everyone had left.  But they did both get naps.  Rebekah woke up really crabby from hers.  All she wanted was her shoes.  She seemed to want to go see Daddy and sleep in HER trailer.  She was not happy when she saw him drive away with it shortly before her nap.  He wanted to get it set up before it got too dark.

At about 7:30, we headed down to the hospital.  Friend Debbie and her daughter Nicki met us at the hospital to pick up Sarah for the week.  Again, bless you Dunham family.

Rebekah continues to have some diarrhea and diaper rash.  Mostly, she has been tolerating her food.  Please pray that the diarrhea and diaper rash go away, and that she continues to tolerate her food.  The chemo will often make her nauseous.  

End of The Week

We made it through another week. Rebekah continues to generally improve (as expected) - just in time for next week's chemo. She continues to have diarrhea and a nasty diaper rash. I'm doing what I can to keep her bottom protected and getting her changed as quickly as possible. She continues, too, to have some pain, but it doesn't seem to be all the time.

This morning at about 6 am, Rebekah threw up all over everything. It would appear that her tummy was pretty full and that may have been the problem. There was a lot to clean up. Uugh! One more proof that we never know what to expect and we can't take anything for granted.

We are having a Helping Hands group from Our Place Church come tomorrow to help do some painting, so Mom and the girls will be leaving in the morning and not coming back until after chemo. We want to stay away from the fumes and smells. Sarah will stay with Grandma A and Rebekah (and Mommy) with Grandma M for Saturday night.

Sunday afternoon, we will celebrate Rebekah's birthday and then head to the hospital.

Next week's chemo is a 6 day stay. Although the stay is long, the drugs don't seem to knock her down quite as badly. Also, she does not have chemo running all day long, so she has a little more freedom.

Please keep us in your prayers this weekend (as we prepare to go to the hospital) and next week (while we are in the hospital).

Happy Birthday Rebekah

Rebekah turned 4 years old today. When she woke up, we had a present here for her. She didn't want to wait to open it and daddy had to get the camera quick. She seemed to enjoy playing with it. Sarah enjoyed playing with it too, but Rebekah didn't want Sarah to keep taking the letters out of it (Rebekah kept putting them back in - she is a "things need to be in their place" kind of girl). We will celebrate with family on Sunday.

Then we were off to one of Scott's client's for a Christmas party and then to the doctor. Sarah needed to have a regular physical, and I figured that it would be ok for Rebekah to go with us (on her birthday) and see her sister have a doctor's appointment when Rebekah didn't have to get poked and prodded. A "mini" birthday present - sister's appointment and shots and Rebekah gets to watch.

Sorry for no updates yesterday. It has been a busy couple of days and I've taken some opportunities to just rest.

Ginger was here from Tuesday afternoon until we left the house this morning. She was a great help - watching the girls, fixing meals, feeding Sarah, keeping the dishes washed, sleeping in Rebekah's room and caring for her and Sarah during the night, etc... Truly a blessing. I was able to sit and do nothing for part of the time without fretting over dishes and everything else that needed done. I even got a little bit of a chance to work on my crochet project, which I haven't done at home in a long time. Mom and Dad were able to get two pretty good nights of sleep, too, which was awesome.

Rebekah's mouth seems to be healing. She is using more words and taking some of her medications in her mouth, again. She hasn't been needing quite as much of the morphine for her pain. She needed the white blood cells so that her mouth could heal and now that they have improved her mouth is healing.

Rebekah has been sleeping better and didn't really wake Ginger up much, which is good. Going to bed, on the other hand continues to be a struggle. Rebekah will ask to go night night between 7 and 8 and I'll put her down. For the next 3 or 4 hours, she will fuss, cry and otherwise want attention. She will ask to be all done with night night, but without any success. She plays all of the "delay sleep" games - I'm thirsty, I need a change, I want music, I want a story, I need owie medicine, etc... I've been pretty patient with her, but it is getting pretty old. I can't really leave her alone when she is doing that, because she can get herself into trouble with her feeding tube which is always connected at bedtime.

She continues to have diarrhea and a pretty nasty rash. She does not like being changed right now and so she won't tell me when she needs a change.

We took Rebekah to Clinic yesterday for counts and a quick check up. Her counts were good and she didn't need any transfusions.

We heard from the eye doctor who is planning to try to open Rebekah's tear duct next Monday evening while we are in the hospital. We hope that he is successful and that Rebekah's eye will feel better.

Tuesday Morning

Rebekah continues to be painful, although it does seem to be doing better. Night before last, she was up at least every 3 hours complaining about owies. Last night, she actually slept for about 6 hours straight. At least I'm assuming she did, because I (Mommy) didn't hear her and I got a 6 hour stretch of sleep. WooHoo!

She is using a few more words and not keeping her mouth clenched so tightly. This morning, I asked her if I could look in her mouth and she opened it up a little. I didn't get a good look, but her lips were looking better. And before today, when anyone asked to look into her mouth she got very tight lipped, so she must be feeling a little better.

Rebekah continues to have diarrhea and now has a diaper rash to go along with it.

She has been tolerating her nutrition pretty well and hasn't been throwing up. That is good. She has figured out how to operate the pump, which is not a good thing. She can shut it off, but she can't get it started again (that takes some buttons which she hasn't figured out) by herself. I have tried explaining to her that she can only change it if Mommy asks her to and that if she wants it stopped she should ask Mommy. Can't say that I'm getting through to her, but one day it will sink in.

Daddy's not feeling well and spent most of yesterday sleeping. He had little or no energy for anything. He's off running errands and going to Court today.

Mommy's not feeling much better, but was able to care for the girls and get a load of dishes into the dishwasher and a load of laundry going yesterday. That was about it.

Sarah has a bit of a cough which seems to wake her up a bit, so she's not sleeping great.

Both girls have been enjoying their princess clothes and Rebekah has had a couple of opportunities to play with the jewelry and enjoyed that, too.

Last night, Rebekah saw a bin of toys that had been sitting in the living room for several weeks (since the carpet was put in) and decided that she wanted them. So the bin went into the playroom for her. She didn't seem to miss any of the toys, until she saw them... Then she had to have them.

Friend LaDonna brought us dinner last night. That was truly a blessing. I don't think any of us had the energy to cook anything. Thanks LaDonna!

Yesterday afternoon, friend Ginger called. She wants to come out today and try to help to give Mom a break. She is planning on bringing dinner and then spending TWO nights so that Mom and Dad can get a couple of nights of decent sleep. Please pray that Rebekah cooperates with that plan and that everything works out. That will be a much needed break. HUGE Thank You to Ginger.

We Made It Home

Rebekah's White Blood Count was up today, so we were able to go home. Her other counts were down a bit, but because her White Count was improving we figure the others will improve, too, on their own and we did not need to have a Red Blood transfusion (and the risk that always accompanies it).

Rebekah continues to have a very sore mouth and is clearly in pain with it. Her pain medication seems to be wearing off before time for the next dose. The doctor has allowed us to give the meds a little more often, which is good. It is hard to see her in pain. The improvement in her White Blood Count will help her to mouth to heal. Please pray that it happens quickly.

She continues to suffer from diarrhea (thanks to the antibiotics). It can make a really big mess. Please pray that she gets back to normal quickly. I'm not looking forward to the middle of the night diaper and bedding changes.

I am feeling better, but I'm still not back to "normal" - or the generally exhausted that I've been for the last many months. At least the nausea has subsided. Now it appears that Daddy is sick. Uugh!

It was early this afternoon when we were able to head for home. Daddy came down late morning to help pack up. Debbie and her girls brought Sarah to the hospital to meet up with us. Sarah helped them decorate and pick out a Christmas tree this morning and early afternoon. According to Debbie, she behaved herself very well.

When we got home, Rebekah and Sarah had a new toy box full of Princess Dress Up items. It was delivered yesterday by a group from Our Place Christian Church. The girls sure seemed to enjoy checking out what was there and playing with the pretend makeup and trying some of the things on. I'm sure it will be a lot of fun for them. They haven't seen the jewelry box, yet. That will be a Mommy and girls play time activity since there are too many small items.

Another group from Our Place Christian Church came and helped around the house. The ladies helped with laundry and cleaning and the gentlemen helped with getting the trim cut for the girls play room as well as taking down some wallpaper in preparation for painting the living room. It is progress and we are very thankful for that. Friend Dave came to help with the trim as well. Thanks to everyone. I felt bad, knowing that the house was such a disaster area (it is tough to keep it clean when we are at the hospital half the time especially when the hospital stays are unplanned).

Wednesday, we will need to go into clinic for counts and general check in. Thursday, Sarah has a regular doctor's appointment. Then next Monday, it is back into the hospital for chemo. One day at a time...

I have been trying to get this post up for quite a while and keep getting interrupted, so I don't know how coherent it is. Sarah has been waking up and crying and I've needed to check on her. Rebekah has been crying off and on and wanted up for a little while. With her nutrition connected, she can get herself into trouble, so we need to be careful when she is awake. It is hard to keep my train of thought with so many interruptions. That is the way things are around here, though, most of the time.

Counts Improving but Staying At Least Tonight

It has been one of those days. I (Mommy) have not felt well all day. I've be nauseous all day and just not well. I've tried to sleep as much as possible, but it hasn't helped much. Grandma M came down and has been helping to keep Rebekah entertained - which has been great. Grandma C had offered as well. I just feel like I need a week to just sleep and do nothing else. Oh how I wish that were possible.

Rebekah's counts are up today, so she seems to have turned the corner. Her White Blood Count was 1.2 today (from 0.3 yesterday). She really needs the White Blood cells to help her fight the fevers and help her mouth to heal. We still want to see more of an increase before heading home, so we will be here for at least one more night.

Rebekah has been a little more active today, which is an improvement, too.

When her mouth is sore like this, she does not open it for anything. She's not eating, drinking or taking any of her medications by mouth or using her verbal skills much. She WILL NOT open her mouth for the doctor (or nurse or mom) to look. Yesterday, we had to force her to open and it was clearly sore. Otherwise she just clenches it closed.

Last night, Rebekah wasn't doing real well with her nutrition. She got herself worked up and threw up a couple of times - not much volume but still a bit of a mess. Then, at about 3 this morning she coughed and caused herself to throw up. This time, it was a bigger volume and we stopped her food for a while. We are still diluting it some with PediaLyte, but it is only about 1/4 PediaLyte.

Rebekah's temperature has stayed down. It is still a little higher than normal, but hasn't been getting real close to "fever". That is a good thing. With her white counts improving, she should be getting better.

Her blood cultures and stool cultures have all come back clear. There was no sign of C.Diff in her stool, so that is good. She is still having diarrhea, which is expected with the antibiotics, but no fun to deal with.

Another Day

It wasn't a real good night. Rebekah continues to not feel real well. It is clear that she is in pain, her nose continues to run and she's been doing A LOT of little sneezes and she continues to drool. I'm sure that her mouth is sore based on how she's keeping it closed and how much she is drooling. Rebekah would, periodically, wake up screaming. Her temperature continued to spike throughout the night.

At 1:30 am or so, I went out to the nurse's station to check and see when she had last been given Benadryl and Morphine and if she could have more. She had recently gotten her dose, so she couldn't have more.

As I was standing there talking with the nurses, I got really dizzy (room spinning). They noticed that I had gotten really pale and offered me a chair, so I sat down. However, I wanted to lay down. They wheeled me into Rebekah's room on the chair and I took a few steps over to the bed. Then I felt I was going to throw up, so they got me a basin. A little while later, I checked my blood sugar (just to make sure) and it was well within normal range. When I was up a little later (getting Rebekah some ice water) the nurses asked if I had eaten anything today, which I had. I'm not really sure what the dizzy spell was all about. I'm feeling better this morning, but not 100%.

Between the alarms, the waking/screaming fits, and my not feeling well, I didn't get much sleep.

When the nurse came in around 8:30 to check on Rebekah, her diaper was overflowing and had soaked the pad under her. So she changed Rebekah and the pad. About 9:30, I could hear that Rebekah was having a bowel movement. I gave her a minute or so, to make sure she was done, and then went to change her. She must have shifted in her diaper and none of it made it into the diaper - what a mess. I was able to get a stool sample for testing and got Rebekah changed and cleaned up and into the chair, so that her bed could be remade.

Amy with Physical Therapy showed up just then and asked how we were doing. I told her we needed a complete bed remake and she went to get our nurse. While Rebekah sat in the chair, Amy played with her while making her work her muscles.

Blood cultures are negative so far. We are continuing with the antibiotics and "wait and see" mode. It has been more than 24 hours since she last threw up. Let's pray that continues.

We're Staying in the Hospital

Her counts are even lower than earlier this week, which really isn't any surprise. White Blood Count is 0.2, so her ANC is even less and I'm not sure they even count it when it is that low. Platelets are really low at 13 so she just got a Platelet transfusion. Her fever was down a little by the time we got to clinic, but spiked again once we were admitted. After the fever spiked again, they gave her some tylenol, so that will help keep the fever down for now, hopefully.

They drew blood for cultures at clinic, so they will start those growing. And they started her on antibiotics as well - the same two she was on earlier this week. They also added one more antibiotic that she was on when she had the C.Diff (bacteria in her colon) since she has continued to have diarrhea. They want to test her stool, so we need a stool sample (when we get a chance) to culture and they want a urine sample to culture as well. All sorts of fun.

She will not continue the antibiotic that we went home on, because the IV antibiotics will cover the sinus infection too. Maybe this time, something will grow in the cultures so we don't have to guess what is wrong and can treat the specific problem.

It looks like we will be here for at least 48 hours.

Debbie met Rebekah, Sarah and I at clinic and helped us out while we waited to figure out what was going on and then she took Sarah home with her. Once, again, she and her family have come to the rescue. Thanks soooooo much!

Melissa, the Child Life specialist, came in shortly after we were admitted and asked Rebekah if she wanted her to come back and play. Rebekah said yes and said Suzi. Suzi is the doll that Melissa brings with her that Rebekah can put bandages on and has a central line that can get "drinks". She has never asked for Suzi like that, so that was good to see. However, when Melissa brought Suzi in, Rebekah just layed in bed and wanted Melissa to give Suzi bandages, her tubes drinks, etc... Not the playful girl that she usually is.

Kristina, the Art Therapist, stopped by later and asked Rebekah if she wanted her to bring some things in so that they could do some art and she told her no. Kristina asked if she was sure and she replied with an emphatic YES. Again, not typical for Rebekah.

An hour ago or so, one of the other Child Life specialists was in and asked Rebekah if she wanted her to come back with some books and she said yes. She was playing with them a little and wanted more and more. More like the Rebekah we usually see. Some of the change could be due to the Platelets and Tylenol. We'll continue to see how she's doing.

She was so tired earlier, that she layed down on the exam table at clinic and fell asleep.

Not Going Well / Off To The Hospital

As if the previous updates from this week were not making it very clear, it has not been a very good week.  And now it is just getting worse.

For the last 24 hours Rebekah has had no energy whatsoever and cannot stop coughing, drooling, snotting, etc. all at the same time.  Her face is so sore that she cannot stand to have another tissue wipe across it and she is soaking through bibs as fast as we can put them on her.  

The swelling and drooling really has us concerned.  Mommy kind of alluded to it in her post a couple of days ago but wasn’t very clear.  We think it might be the mucousitis caused by the recent chemo but are scared because she looks (and with the drooling acts) just like she did when the tumor had taken over back in April.  Obviously that’s a worst case scenario but we are fearful of it.  

Rebekah continued to spiral down this morning and ultimately ended up with a fever again.  The clinic asked that we bring her in right away and “Be prepared to stay” although they don’t know for sure whether we will have to.  Mommy and the girls are on their way right now.