Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Tuesday, January 31, 2006

An Interesting Day

What a day! Rebekah was up early (at about 7:30) and didn't want to go back to sleep. Sarah continued to sleep in, until about 9:15. The girls played (some with each other, at times taking toys from each other), ate (Sarah like a piggy, Rebekah like a mouse), napped (both quite a bit), filled their diapers, laughed, cried, tickled each other and Mommy and generally had a good day.

This afternoon, we watched out the window while it snowed (yes snowed). It has been raining and raining and raining and today for a short while it snowed. The temperature was dropping, too, which had us thinking it might start to stick. It never did and it warmed up, but it was neat to watch (from the warmth of the house).

Fran called and brought out some food and LaDonna brought some food from Sandy, too. It is great that I don't have to worry about what to fix for dinner, especially when life is hectic and the girls are taking extra care. Thank you so much Fran, Sandy and LaDonna!

The girls seemed to go to bed well. Then Sarah woke up screaming - she had lost her binky. Mommy had to search for it and found two hiding under her crib.

Then, Rebekah woke up screaming. She wanted her food stopped and disconnected. She wanted a diaper change, too. She said she had owies, but didn't want any medicine. I gave her some morphine, anyway, as she seemed to need it. I stopped and disconnected her food, changed her diaper, sang to her, and started her music. She still wasn't happy and was crying, but nothing I was doing was helping, so I told her I loved her and that she needed to go night night and left the room. She finally settled down. Before, I go to bed, I'll connect her food back up and get it going again.

Daddy is still not feeling well. Fran brought some Zicam for him, so hopefully that will help. He went to bed early tonight and I hope the extra rest will help, and that he won't wake up too early without being able to get back to sleep.

Nikolette's services are tomorrow, so please keep her family in your prayers. This cancer journey has so many ups and downs. Nikolette's family is coping with what we all fear - the death of their child. We grieve so much for this family. We rejoice with families when things are going well and we cry with families when things are going wrong.


Monday, January 30, 2006

Another Monday

Rebekah didn't eat much today, but wanted some in front of her while the rest of us age. Her diaper rash is getting better, but it still isn't pretty. I'm keeping it covered with an ointment (Xenaderm) that will help it to heal. We used the same ointment on the worst of Rebekah's radiation burns. She continues to ask periodically for "blue" owie medicine (the only medicine that she gets that is blue is morphine) and does not want the daily GCSF shot.

She seems to be a little more tired, taking more naps. It could be from her dropping blood counts. Her nap this afternoon was on the floor. I'm not sure why, but at some point she crawled out of bed and onto the floor in her bedroom and fell asleep.

Rebekah has been tolerating her feeds today, so that is always a good thing.

Sarah has been a tired girl, too. I think she is probably growing. She is sleeping longer during the day. She got up this morning and after eating some breakfast, wanted to go night night. Are we starting a new trend?

Daddy has been fighting a cold. That tends to make him cranky and less patient. Unfortunately, he still has to work and had lots of things to do today, so he didn't get a break today. Please pray that he feels better soon.

Mommy has been dealing with mail, bills, dishes, and ignoring laundry and cleaning (at least for today) as I can only do so much. That is, of course, in addition to being Mommy to two beautiful and delightful girls. They have both made me smile and brought tears of joy to my eyes today. Rebekah is being such a big girl and such a big helper. She is always trying to clean up, get things out of the fridge, get her sister food, help with her (or her sister's) diaper changes, etc... Sarah is growing up so fast. They are beautiful girls, each in her own way. How can I not smile and be thankful for what I have? God is good!


Sunday, January 29, 2006

First Day Home

It wound up being a pretty good day. It didn't start out so good, however. Rebekah woke up at 7 am and needed a diaper change. While I was changing her, she started throwing up. I had trouble dealing with the vomit and getting the diaper fastened and trying to keep her calm. It was a bit of an ordeal. Luckily, I had disconnected her from her feeding tube before changing her diaper, so I didn't also have to struggle with getting it stopped or worry about getting caught up in the tubes.

After that, she did go back to sleep for quite a while. Sarah, on the other hand, started making noise a little later and she and Mommy got up about 8. We had some breakfast - eggs and toast. She ate an entire egg and a full slice of toast, cut into quarters. She is getting to be such a big girl! After getting her cleaned up from breakfast, I went to take her into the playroom. She got pretty upset and started signing "night night", so I put her back down for a nap. She slept for a couple of hours. Go figure!

This is the first hospital stay in a very long time (since before Radiation started in July) that Rebekah has come home from the hospital eating some bites. It is not much, but she wants to eat and she is swallowing some of it and it is staying down. It is very exciting to us. The one throw up session that we've had so far since we got home is nothing in comparison to what we've come home with in the past several chemo rounds. We still have to take things as they come, but we are hopeful for a better recovery this time.

I am looking forward to the possibility of many things, all the while realizing that it may be a while, yet, before they can happen, but finally feeling like they might actually happen. Things like, Rebekah getting back to school, into regularly scheduled Physical Therapy, Speech Therapy and Occupational Therapy and being able to get out of the house without worrying about every little thing (knowing that Rebekah's counts are sufficient to fight infection). Then there are things that may take months or years, like Rebekah eating and not requiring her G-Tube at all or at least getting her nutrition in during the day, so she doesn't have to be hooked up all night and could actually wear sleepers again, Rebekah and Sarah being potty trained, having Rebekah's central line removed and one day having her G-Tube removed. I know these will take time and there will likely be setbacks, but I can't help look to the future and see some good.

That said, let me explain a little bit about what the doctor told us during our meeting this week. Daddy explained that, despite having made it through "treatment", Rebekah really doesn't have any better chance of survival. We are thankful for each day that we have with her and have to hope for a long life with the realization that it may not come to be. For the next four years, Rebekah will have scans every 3 months to look for recurrences of her Ewings. Then cans will continue annually. After worrying about the Ewing's coming back we have to worry about Leukemia. Because of the chemotherapy drugs that she has received, Rebekah has a higher probability of getting Leukemia. It's not as high as the chance of the Ewings returning, but it is significantly more than the population at large. In addition to this, we have to worry about Melanomas in her face (where she received the radiation).

The radiation has also done damage to the bone structure, vision, hearing and growth of 1/2 of her head/face. We will need to have good relationships with an Opthamologist to deal with vision issues, an audiologisy for hearing issues, a Dentist for teeth (possible replacements) and hygeine because her saliva is not working properly, and an ENT surgeon to help with facial reconstruction in an attempt to try to keep some symetry in her face - in particular keeping her jaw functioning properly so we don't cause permanent damage. We can't say yet how often all of these surgeries are going to have to take place but they will be regularly (too often) until she stops growing as an adult.

All in all, we came out of the meeting with a positive outlook. There was a lot to absorb. We know that we will have a lot of continued care for her and many fear filled days ahead as we approach each round of scans and deal with the side effects of treatment.

Barring any fevers or infections our next scheduled clinic appointment is Thursday. Until then she gets regular medicine and shots and we have to keep Rebekah safe from outside germs as her immune system is compromised.


Saturday, January 28, 2006

We are Home

We have made it home. When Rebekah woke up this morning, at 6:00 am, she wanted Daddy, ChiChi, Grandma and ByeBye. I explained to her that she needed to finish her night night so that we could see Daddy and go home and see ChiChi and Grandma. It took a little while, but she did fall back asleep and slept in until 9am or so. Once she was up, she wanted Daddy, ChiChi, Grandma and ByeBye again. She got a new diaper, changed into her "normal" clothes (and out of the hospital jammies) and wanted disconnected from her pole. The fluid bag was just about empty and we had met the time requirement, so the nurse disconnected her so that she could be free and not have to worry about keeping the pole with her. Thanks Nurse Molly!

Mommy continued to work on packing things up and getting us ready to go. Rebekah, grabbed the phone and started dialing and calling out for Daddy. Mommy dialed Daddy for her so she could talk to her Daddy and did she ever talk. A little later, Daddy came over to the room and the three of us took most of the things down to the van. We were ready to go and waiting to see Doc to discharge us.

Rebekah passed her "Patrick" balloon to another young child, who would probably enjoy it. Doc took Rebekah into the boy's room to give him the balloon. According to Doc, she did a "great" job. (And we noticed that she didn't come out of the room with the balloon, so that was good.) We got out of the hospital late morning.

The last couple of days have been pretty busy. Grandma M came Thursday night after work and stayed with Rebekah through the night and the next day. Thursday night, Mommy and Daddy were able to go out to dinner with friends Bob and Ellen. It was nice to get to sit down with them and enjoy some time with together.

During the day, Thursday, we had a visit from Rebekah's Chemo Pal and Rebekah had time with Physical Therapy and Speech Therapy and got to bake some cupcakes with Melissa of Child Life. She had a hectic day, and didn't take a nap until 5:30pm or so. She had so many visitors that she never wanted to calm down for a nap. When she got tired (while she was cleaning up after baking), she told Melissa she wanted Daddy and they headed back to the room. Mommy laid her down on the bed and she settled right down to sleep. She woke up pretty cranky, just before Grandma got there.

Friday, we continued to have many visits. One of them was a visit from Addie and her parents. Addie was in the hospital for a followup appointment on her heart surgery 7 months ago. They brought a balloon for Rebekah and visited for a little while before going to their appointment. It was nice to see them and glad to see Addie looking good. Later in the day, Rebekah's Chemo Pal (Meena) came and brought a baby doll for Rebekah. Meena asked her what the baby's name was and she said Addie. Baby Addie likes Giraffe's - she has one on her clothes, a stuffed one and one on her blankie.

Her End of Chemo party was good - visitors included Grandma M, Grandma A, Aunt TT, Uncle Mark, Cousin Jacob, Cousin Michael, Uncle Chuck, Aunt Molly, Cousin Cole, Debbie (who watches Sarah for us while we're in the hospital) and some of her kids - Halley, Kelsey, Drew and Kelsey's friend Tiara in addition to Melissa of Child Life who threw the party for us, some nurses and some Clinic staff members. Grandpa and Grandma C were out of town, but called to extend their wishes. Rebekah wanted some of the pizza and cupcakes and ate bites of both. It was great to see her wanting to eat and taking some bites.

It was hard to celebrate while we knew that another family was suffering from their loss. Please pray for Nikolette's family.

Rebekah has a really bad diaper rash - thanks to the soft stools and the chemo. We are keeping it covered and trying to keep her clean. With her counts dropping, she will have less ability to heal on her own, so the rash is likely to stick around for a while.

Last night was the first night (this hospital stay) that Rebekah did not throw up. She didn't get quite as much nutrition, but everything stayed down. That is improvement. It is always a little bit of a guessing game as to how to get Rebekah enough nutrition in each day and what portion should be "with fiber" and what portion should be "without fiber" and how diluted should it be and what rate for how long and then when does it need to be shut off because she's going to get sick if it isn't. It isn't any fun, but we seem to be getting better at it (maybe).


Friday, January 27, 2006

End of Chemo Party Tonight / A Loss

It has been an emotionally filled day and Rebekah and all of us are very much looking forward to Rebekah's end of chemo party tonight even if it will be a bit subdued.

Words are difficult. While we are happy for where we are, it is very difficult to rejoice when others are having so much sorrow. Another chemo friend passed today and our hearts and prayers are with her family. For the tear in our eye and the little buttefly:

In Loving Memory

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.



Thursday, January 26, 2006

The Meeting

Rebekah has had a rough day. It is pretty clear that the chemo is catching up on her and knocking her down flat. She is spending a lot of time screaming, hitting, saying "no" etc.

Mommy and daddy had their "post chemo this is what to expect" meeting with the doctors. Mommy says I am not allowed to be graphic or, as I tend to call it, "bottom line" with you right now. I guess what it comes down to is that we have to be grateful to be this far (which of course we are) but our odds are really no better right now than 9 months ago - we have just had 9 months more. From here on out every day/week/month of survivability does increase the odds, however.

Maybe next week we will follow up with some more specifics but for right now we are just letting it hit us and we are going to have to leave it at that. Grandma is just arriving and we need to try and get out of here.


Wednesday, January 25, 2006

Some Details on the Day

It has been a hectic day.

Grandma A tells me that Rebekah woke up at 12:30 or so this morning and threw up. She called it a flood. It required two nurses to help get things cleaned up and get Rebekah a sponge bath. Once everything was cleaned up and Rebekah was ready for bed, again, Grandma told her that now that her tummy felt better, she could finish her sleep. Rebekah made a face and then layed down and went right back to sleep. That makes two days in a row that she has thrown up around midnight (give or take an hour). Tonight, I cut her food rate down at 10:30 hoping to avoid the midnight vomit session.

I made it back to the room about 8:30 this morning. Both Rebekah and Grandma were awake. Rebekah needed a new diaper (and some new bedding). She does a good job of soaking through her diaper - she gets so much fluid and nutrition that she can easily soak through a diaper in an hour and a half. It is hard to keep up with them. At night, she will often "hold it" and then flood. I hope that is a good sign for having a successful time of potty training her, at some point in the not too distant future.

At 9 am Penny, the speech therapist, came and played with Rebekah for nearly an hour. Rebekah was doing a very good job of using her words and saying please. She was getting her point accross most of the time. It was great to see her doing such a good job with her words and her manners. By the time Penny left, Rebekah had soiled another diaper and soaked through all the layers of blanets in the wagon where she was sitting. So, another diaper change was needed.

A little after 10, Josh and his parents stopped in. Josh brought Rebekah a Dora book and showed her his Trailblazers basketball (even letting her play with it). Rebekah showed him her G-Tube, so he could see one in real life. He is probably going to get one soon. While they were here, Rebekah's new friend Stephanie and her mom came by to say goodbye (she got to go home today - yeah Stephanie). A little later, Stephanie's mom brought Rebekah a Patrick balloon (from SpongeBob SquarePants). It had been given to her and Rebekah had enjoyed playing with it so much that Stephanie wanted Rebekah to have it.

Then at about 10:30, Grandma A took Rebekah for a ride in the wagon and Mom talked with Melissa of Child Life. About 11, Grandma and Rebekah came back with Sarah in the wagon, too and Debbie in tow. Shortly after, Daddy showed up and then Grandma C came. As we (Mommy, Daddy, Sarah and Grandma A) were getting ready to leave to take Sarah for her haircut, friend Fran stopped by to deliver some home made food for us. Fran's food is always delicious and greatly appreciated. She had everything already labeled for us, so that it could go into the "family" fridge - she even took it down and put it there for us. And she brought some cookies, fresh fruit and snacks. What a blessing!

And somewhere during the 10-11 hour, nurse Betsy came in to get Rebekah's antibiotic going (she gets it once a month and it was due).

We headed out to Sarah's haircut and Debbie (and Grandma C) took Rebekah for more wagon rides and Debbie played with Rebekah.

Once we got back, Sarah was hungry and so Rebekah shared her lunch with Sarah. Rebekah didn't eat any of it, but Sarah ate bite after bite and ate darn near half of the meal. While Sarah was eating, Doc came in to examine Rebekah and check in with us. It was a crowded room (once again) with Grandma A, Daddy, Mommy, Debbie, Rebekah, Sarah and Doc. Oh yeah, and at the same time nurse Betsy came in and was getting her chemo started.

After Sarah ate, it was obvious that both Rebekah and Sarah were pretty tired. Sarah and Debbie headed home, Daddy headed back to the trailer to work, and Mommy and Grandma A put Rebekah down for a nap. Then Mommy had some lunch (thanks Fran) and Grandma A had some lunch.

After an hour or so of nap, Rebekah woke up screaming and obviously hurting. I shut her food off immediately, hoping that I could keep her calm enough to not throw up. I also asked the nurse for some Tylenol. It seemed to work. She eventually calmed down and did not throw up. We took care of another diaper change and then got into the wagon for another ride.

Shortly after heading out, we ran into Amy (the Physical Therapist) and a PT student who were coming to look for Rebekah. So we got Rebekah her shoes and out of the Wagon and her pole disconnected from the wagon so she could play with Amy and the student. They did puzzles and played with a ball and then went into the play room for a while. Rebekah always seems to have fun with PT and today was no exception. Then we headed back to the room for another diaper change and Mommy checked in with nurse Betsy.

About 4:30 or so, Daddy drove over and picked Mommy up and we headed out to dinner with our friends Greg and Christine. It was great to get out and even better to get to see them and their little one and visit. Grandma A stayed with Rebekah, so that we could have the chance to get out.

After we got back, Daddy came up and we took Rebekah for a walk down to the Star Lounge so that Grandma A could get her food out of the fridge and then head for home. Rebekah wanted to hang out for a while, so we sat at one of the tables and stacked checkers. Rebekah wanted down and as I started to help her get down, it was clear that she needed another diaper change and the chair needed a disinfectant wipe down. Daddy took care of the chair, while Mommy headed back to the room with Rebekah for her diaper change.

Rebekah got her nightly meds and we called for IV therapy to come and change Rebekah's dressing. It needs changed at least weekly and it had been a week. Daddy headed back to the trailer and Rebekah and Mommy went out for more wagon rides. She was enjoying waving at different patients and liked it when they waved back. She picked out a couple of videos that she wanted to watch and we headed back to the room and put one of them in.

She was being a little crabby and I thought a little morphine might help with that (as well as be a good thing to have on board before her dressing change, which are always traumatic), so we got that for her. Just after she took it, IV therapy showed up. Rebekah immediately started saying "no". She knew what IV therapy was there for and she did not want it. She did pretty well with the change (other than sneezing after the old dressing was removed and the area was cleaned and drying and the IV therapy nurse had her sterile gloves on, which I can't blame her for). We had to get another cleaning wand to clean the area again, which meant hitting the call button to get another nurse (our nurse was helping keep Rebekah safe) to get one and bring it to us. But we got it done and she got a curious george bandaid (as a reward) that she wanted to put on her pants.

After her dressing change, she got a fresh diaper and settled down to sleep. She has been asleep since and is doing well so far. Hopefully, she will have a good night and no vomit sessions. Nurse Heather brought in a big chemo bag for anything that gets contaminated with bodily fluids. We hope that just by having the bag in the room, we won't need it. Not to mention all the other things we've done to try to avoid the issues like slowing down the rate of the food, keeping it diluted, keeping the zofran (anti nausea medication) up and targeting 5 cans of pediasure instead of 6 (we should have 5-6 cans each day).

This evening, one of the IV pumps has been beeping quite a bit, with a variety of errors (some of which I have never seen before). I'm hoping that it will not continue over night. I'm going to head to bed now and hope to get a good night's sleep. At least a good hospital night's sleep.

I've probably missed some of the events for the day, but I hope I've given you a picture of the day.

Tomorrow, we hope to meet with Doc about what the future looks like - what we can expect for scans and clinic visits and to some extent specialist visits. We haven't really had an opportunity to look beyond "chemo" and really want an idea of what to expect.


And Back Together After The Haircut

Rebekah sure misses her sister when we are in the hospital and it's awesome when Debbie brings Sarah down. Even though Rebekah can't eat it, she sure wanted Sarah to eat her hospital food...


Chi Chi's Hair Cut

Forgive the excursion away from Rebekah for a second or two. I believe these will speak for themselves.


Nothing Comes To Mind

Last night Music Therapy came around and you can see the joy that it brought Rebekah. It was really cute.

I can't recount for you the day's events because I have been trying to get some work done out in the trailer. What I can say is that I am SO blessed by being able to be here and feel so much for other families where one parent (or both in some cases) is not around during treatments.

Yesterday two different times Mommy called and said that Rebekah really wanted to see daddy or was asking for daddy. It was such a delight to be able to drop everything and run (Literally) across the parking lot, through the hospital, and up into her room and hold her, kiss her etc. I did spend quite a bit more time yesterday than usual in the hospital and that is good.

Monday night was also interesting. I had spent a fair amount of afternoon time there and about 6:30 came back to the trailer to try and do some more work. What I started doing, however, is reading some past blog entries as well as some blogs from the other cancer kiddos. About an hour and half later I couldn't see through the tears and had to go back to the room and hold my little girl. She wasn't in much of a being held kind of mood but that was okay as what she wanted to do was run around the hospital dragging her IV Pole in tow. Again, I was so blessed to be able to be close enough to fix my emotions with a visit; not every parent can do that.

As always, we want to thank the Dunham's for taking such great care of Sarah and allowing us the hospital time to focus on Rebekah's (and our?) needs. And we also want to thank Grandma A for spending last night with Rebekah so mommy and daddy could have some alone time together in the trailer. I think the last time we actually had alone time without having to worry about the girls was... got me?

Today Debbie is bringing Sarah back later this morning and we are going to get her first hair cut. We are going to Shami, a friend of Grandma A's, and the same person who cut Rebekah's hair all off before the chemo. I am sure that will bring back some memories as well.

Thank you for your prayers, comments and support. I am really excited that it looks like we will just about end this last week of chemo with 50,000 visitors to this site since treatment began. WOW. PLEASE continue to check up and to share this and with others. Numbers are not everything and we know that but they are dropping off - HelpRebekah hardly gets 10 hits a day anymore.


Tuesday, January 24, 2006

Admitted to the Hospital

Rebekah woke up this morning about 7 and wouldn't go back to sleep. With all of us in the camping trailer, that meant we all had to be getting up. I tried hard not to get up even covering my face in the blankets, but that didn't work for long.

Our appointment was at 10, so we had a while to play and get breakfast (Mommy ate, Rebekah didn't) and get things into the van (to go into the room).

Once they drew blood and got Rebekah's vitals, they started fluids. With this set of chemo drugs, she needs 6 hours of fluids before they can start chemo (and her urine cannot be too concentrated) so the earlier we start fluids the earlier we can potentially start chemo. The earlier we start chemo, the earlier we can go home on Saturday. She has two hours of chemo each day and an additional 9 hours of a bladder protectant (it starts after the first hour of chemo and runs for 10 hours total). They generally try to start day two's chemo 2 hours earlier than day one's started and so on for the 5 days of chemo. Then we have to stay for 24 hours after day 5's chemo started. We started chemo today at 5pm. Tuesday could start at 3, Wednesday at 1, Thursday at 11am and Friday at 9am and we could go home Saturday morning. It won't happen that way, I'm sure, but it would be nice.

Rebekah's counts were really pretty good for her. Better than we've seen in a while. The last round of chemo, without the one drug, was much easier on her than other rounds have been.

We saw Gage and his parents while we were at clinic. They were just coming in as we were getting ready to be admitted. We chatted for a little bit and hoped that we might see them "in-patient", but Gage's counts weren't sufficient to start chemo so they will wait another week. They knew that there was a good possibility that they would need to wait, so it didn't really come as a surprise.

Rebekah has been on the go most of the day. After we checked into our room, we headed over to the cafeteria (where we met up with Daddy) and had some lunch. Rebekah really wouldn't touch anything. Then we headed back toward the room and Rebekah wanted to keep going, so we made some loops around the ward and then headed into the room for a little while. She fell asleep in her wagon and slept for about an hour. As she was snuggling into the wagon, I asked her if she wanted a blanket and she told me no. While she slept, I brought stuff up from the van (most of it anyway). She woke up really crabby. We got a fresh diaper and then headed out of the room some more.

She saw Melissa of Child Life who pulled her around in the wagon and took her into the classroom where she helped her to color (until she started being loud and disturbing the other students). She walked for a while with Janine (Physical Therapist) pulling a car on a string that made music and flashed lights when it rolls along. She drew some pictures with Kristina (Art Therapist) and played with some clay. Grandma C stopped by while we were at clinic and brought Rebekah a book and read it to her and played for a while. She wanted Daddy to read it to her later and Kristina too.

This evening, a group of volunteers came with games, toys and remote control cars. They brought some puppets for Rebekah to play with - all of which make noise. She had fun with them. Then she got to drive the car (she wasn't so thrilled about that), but she did like watching the cars go a little later.

Rebekah made a new friend - Stephanie. Stephanie had back surgery this morning and has to lie flat until tomorrow, so she couldn't go anywhere. Her mom was standing outside her room this evening and Rebekah waved to her and she waved back. We stopped by the door and Rebekah waved to Stephanie and then had to go in to visit with her. Rebekah really liked playing with Stephanie's balloon and her singing piggie and the "Get Well Soon" bear that has his arm in a sling. Stephanie seemed to enjoy the company, despite the age difference (Stephanie is a teenager). Rebekah was doing a lot of talking and making her desires known. She noted that Stephanie had a pole and her tubes were getting drinks. She wanted to hold Stephanie's hand. She was being the social butterfly.

This evening, as we were strolling around, she saw nurse Katie behind the nurses station and was calling her name. It wasn't perfect, but we could tell that she was saying "Katie Katie Katie Katie". It was neat to see her calling for Katie and saying her name without being prompted to say the name.

About 9:30 this evening, we came back to the room for bed. Rebekah brushed her teeth, we changed her into jammies and got a fresh clean diaper on and layed in bed. She really wasn't too interested in going to sleep, although she was pretty mellow. About 10:30, I turned the lights out and she seemed to fall asleep. Then, at about 11:30, she started coughing and screaming.

I shut her nutrition off, checked with Megan (her nurse) to get her some morphine and to see where her claritin was and tried to do what I could to calm her down so that she wouldn't start throwing up. It didn't work. She threw up all over the bed and she would not cooperate with me. She kept trying to lay down and I kept sitting her up. When she lays down, she often pukes straight up which makes a royal mess! Once things settled down, I got her cleaned up a bit and snuggled into my arms in the chair so that Megan could remake the bed.

She is back to sleep now and we just started her nutrition up again at a slower rate. She has been throwing up a fair amount while getting chemo (at least for the last several chemo's) and we go home with her throwing up. It will get better, it just takes time. It is tough to see her knocked down like this and not feeling well, but she does seem to bounce back from it.


Sunday, January 22, 2006

At The Hospital Yet Again

We are set up at the hospital.  It took all day at home yesterday and today to get packed.  We arrived here late afternoon/early evening and the girls both played in the trailer with mommy while daddy got things set up.  Then Debbie and Kelsey (Sarah’s other family) showed up to cart her away.  It’s always difficult having to let her go but the Dunham’s have been a spectacular “second” family for her and we owe them SO much.

Mommy, daddy and Rebekah then went out to dinner at a kid-friendly Mexican restaurant the Pashley’s showed us a few months back – Chez Jose.  Good food and kids everywhere.  This is one of the few days in the entire chemo cycle that Rebekah’s counts should be good enough to be out in public so we took advantage of it.  Rebekah enjoyed watching the other kids, especially the babies.  Then we walked around the dollar store for a while (trying to wear Rebekah out so she would sleep well in the close quarters of the trailer tonight.)  Rebekah shopped and shopped every isle.  Daddy is REALLY scared that he has a shopper on his hands.

We got back to the trailer and put Rebekah to bed.  That was about 45 minutes ago and she is still lying down behind the curtain saying “shhh shhh shhh”.  She was actually singing a few minutes ago.  Once she gets to sleep mommy and daddy can set up their beds.  Right now its just trying to be quiet and watch the small 13” tv and keep quiet enough for Rebekah to sleep in this 100 square foot mansion  (

Tomorrow morning we go to clinic first for blood tests and then, assuming that her blood counts are acceptable, we will be admitted and start chemo.  We would like to see chemo start by 6pm based on past experience.  Yesterday we were a bit concerned Rebekah would need blood because she was being crabby, had no energy, and would not leave mommy’s arms (making it fun to pack!)  Today, however, she seemed to be a little bit better.  She misses her sister already but has over all been doing pretty good.  I really hate to see us going into chemo again and knocking that out of her again.

Please pray for the week to fly by and be uneventful with Rebekah keeping as much of her strength as possible.


Saturday, January 21, 2006

Typical Day

Yesterday was another typical day for us. Nothing really that exciting. We are continuing to prepare for our hospital stay, so it was a day of cleaning, laundry, dishes, packing, etc...

The girls played pretty well together. Rebekah continued to eat some bites. If Sarah was eating, she wanted something too. She might or might not eat any of it, but she wanted her own.

Sarah took a very late nap, so she got to stay up a bit later than normal and Rebekah wasn't too happy with having to go to bed right after Sarah. Although she did a good job. Once she was tucked into bed, she was pretty much asleep until this morning. That was a nice change of pace.

After the girls were down, we put on a movie and I promptly fell asleep. By the time I woke up, it was just about time for bed. I went to try and do a quick update but blogger seemed to be having problems, so I gave up and went to bed.

Both girls were awake at 7:30 and needing diaper changes (and Rebekah needed new jammies and new bedding), so I took care of the changes and put them both back to sleep. Well, I tried anyway. Neither of them really cooperated, so after a little while we all got up.

Grandma M is coming a little later today, so we can continue to get ready to go. I know the girls will enjoy having her here and I will be able to get a lot done.


Thursday, January 19, 2006

Shopping Adventure, Rebekah Eating Bites

Another day is drawing to an end. There isn't all that much to report.

The big adventure for the day was that Mommy and the girls went to do some shopping this morning. Sarah needed some pants to go with the shirts she has and Fred Meyer had all their baby stuff on sale - some of it 50% off. I figured that was a good time to go shopping and some of our friends had given us Fred Meyer gift cards or cash (we are so thankful for those friends), so that was even better. I was also able to get Rebekah a couple more bras (yes our 4 year old is wearing a bra - we can tuck her central line tubes into the bra to keep them from being tugged on, which is a good thing) and some socks (she has been asking to wear yellow socks and the only yellow socks that we have are hospital one size fits no one). I picked up some groceries, mostly in preparation for next week as well as tonight's dinner. It is nice to get out to the store myself, but it doesn't happen all that often these days.

The girls were getting pretty crabby by the end of the first store, so we headed for home. Both girls fell asleep on the way home, so they were both put down for naps once we got home.

Rebekah ate a few bites again today - some goldfish, some ravioli pieces and some green beans. I expect next week's chemo will put a temporary end to eating, but hope that as she recovers from that chemo, she will start to eat and we can continue to encourage that and begin to make progress.

Although we are getting ready for the last chemo, it is a mixed bag of emotions. While we are excited that this phase will be over, we know that there is so much more in the future. We are anxious for the results of the post chemo scans that are scheduled for the week of February 6th and uncertain about what the future holds. Please pray that the scans will be clear and without any concern. As I understand it, Rebekah will have scans every three months for four years, so there will be many anxious weeks ahead. In addition, we will begin the process of dealing with the side effects of the chemo and radiation.

We will need to deal with Rebekah's plugged tear duct and check for any other eye damage. I expect that there will be many visits to the eye doctor in the future for Rebekah. The effects of the Radiation can take a long time to show themselves. We will have to deal with what we get.

We need to get Rebekah away from her reliance on the G-Tube. It will be a long process, but I have hope for it to be possible. I will tell you, I was in tears today just watching her eat some bites of dinner. She didn't eat much - a bite or two of ravioli and 3 or 4 bites of green beans, but it brought joy to my heart that she wanted to eat and was swallowing more than she was spitting out. It gives me hope for the future.

As she grows, we expect that the left side of her face will not grow like the right side, so she will need surgeries to correct it. It is hard to comprehend what all this could entail. I just have to take it as it comes. One day at a time...

At the same time, we are so incredibly thankful that Rebekah is alive and enjoying so many "normal" things. She is a delight. She is a blessing to us. We consider each day a blessing.


Wednesday, January 18, 2006

Wednesday Night

Melissa and her daughter Kerissa spent a few hours with us this morning. Melissa helped watch both girls while Mommy got some stuff done. That was great! It was nice to be able to get to some of the things that I haven't been able to get done yet this week. I was able to get the fridge in the trailer emptied and defrosted, so that it is ready for next week's hospital stay, get some laundry done, put some clothes away in Rebekah's room (that have been sitting in a basket for a few days), get Sarah a nice bath, dishes, etc... Thanks so much Melissa!

In many ways, today has been just another day (same old, same old). Sarah eating up a storm, cranky because of her teeth and diaper rash (which is getting better), and generally playing well. Rebekah eating very little, wanting to do everything herself (except if she can get Mommy to pick her up and carry her), throwing up, throwing temper tantrums, playing, wanting to read books, etc... My headache is only a little better.

Rebekah needed her dressing changed tonight and did a VERY good job with it. She was upset (every time I mentioned a dressing change, she said "no"), but she was not incosolable and didn't cry the entire time. We are so proud of her!


Tuesday, January 17, 2006

Another Day is Done

It has been a day. I've not been feeling well. I've had a headache that hasn't gone away for at least 4 days now and today has been the worst. I tried my prescription for migraine headaches today, but that didn't work either. I have tried to rest today, but haven't had much luck. The girls and circumstances just haven't helped.

Rebekah has been doing ok today. She ate a few more bites today - some wheat thins this afternoon (half swallowed and half spit out), a gold fish or two at lunch, and some bites of corn, apple and burrito at dinner. Again, not many bites, but more than we've seen in a while.

She has fought against taking a nap and against going to bed tonight, but at the same time was acting very tired, getting upset over the smallest things and throwing temper tantrums, etc... It is tough to watch her act up, but that is part of growing up, isn't it. She continues to want the lotion on her belly, cheeks, and legs at night. She has to put it on. She put some on Mommy's face, too.

Sarah has had many poopy diapers today and has a rash to show for it. She has been screaming with each diaper change. It has been a rough day for her. In addition, I believe that her teeth are continuing to bother her. Poor Sarah!

Lately, Sarah has been taking a dolly or stuffed animal and laying them down on a pillow. Then she will get a blanket and put it over the dolly or animal. It is really cute to watch. She pulled a pillow down from the top of the couch onto the seat and layed down on it herself. Rebekah insisted that we get a blanket for Sarah. Mind you, she didn't want Sarah to have her blanket so we had to get one of Sarah's blankets.

Both girls are taking the teapots and pouring into a cup and taking drinks. Sometimes, they will even give a cup to each other or Mommy or Grandma and fill it up for them to drink. After they've taken a drink, they will fill it up again and again and again...

Our hearts continue to be heavy and prayers continue for Oliver, Gage, Kennedy, Nikolette and Josh as well as Madeleine, Kaitlin and Warren.


Monday, January 16, 2006

Monday Evening

Our clinic appointment went well. Her counts are still doing well and all is generally good. We do not need to go back to clinic until next Monday when we should be admitted for our last Chemo treatment. Rebekah's Chemo Pal met us at clinic and played with Rebekah and helped to entertain her while we waited. It was good to see her again.

Don't get me wrong, Rebekah has issues. She continues to sneeze and need an antihistimine. Her occasional cough seems pretty painful and she needs at least one dose of morphine most days. She eating only an occasional bite here and there (she did eat 3 or 4 bites of cooked carrots tonight - the most I've seen in weeks), so basically all of her nutritional needs are having to be met by g-tube feeds. She has bouts of throwing up. It just seems that nothing has gotten dramatically worse in the last few days. With as many kids as are having serious problems, I count my blessings that we are hanging in there. Yet it makes me wonder what sort of issue might be around the corner for us and when will it hit.

Rebekah's left eye is a little puffy (but not red) and I was a little concerned about whether it might be infected. I didn't really think so, but knowing that her tear duct is blocked it had me concerned. That was one of the things that the eye doctor wanted us to look out for, and if it became infected he would want to unplug it before we were done with chemo. I asked the Nurse Practitioner if I needed to be concerned about it and she told me it did not appear to be infected. That was good to hear.

We saw Kennedy's mom (and Kennedy) at clinic. She is still having a rough time. She is at home, but having lots of struggles. Please continue to pray for her and her family. Kennedy seems really sad and could use some encouragement.

After Clinic, we headed up to the floor to check in with Gage and his Mom. We chatted for a while. They are hoping to go home tomorrow. His counts are coming up a little. He can still use a lot of prayer. Gage isn't wanting to do much other than lay in bed and watch TV.

Grandma M stayed until both girls were in bed. Daddy wasn't home when Rebekah went to Bed (he was at Fire Department Drill) and she was not at all happy that she couldn't give him Night Nights. She tried to get out of bed a couple of times to go find him. I explained to her that he wasn't home, but it took quie a bit of convincing.

There are some changes to the right hand side of the blog. Check them out! There is a second "Prayers for Rebekah" button. Also, toward the bottom is a list of "Referring Web Pages" for the last 24 hours. You might find these interesting.


Monday Morning

Today will be a regular trip into clinic this afternoon to see how Rebekah's blood counts are doing. With it being a holiday, Grandma M has the day off and will come to the house to watch Sarah while Mommy and Rebekah go into clinic. That will make it much easier for Mommy!

Rebekah seems to be doing ok right now. The claritin seems to be helping. She continues to ask for her "blue" medicine (morphine) periodically and wants lotion on at night time. It does seem, that once she has the lotion on, she falls to sleep. Go figure! Although, I will say that I have given her a lotion with lavender and other ingredients to help soothe to sleep. Maybe we need to add lotion to the regular bed time routine. If it helps put her to sleep, I'm all for it.

The stool softener did it's job and I was a bit sorry for giving her the second dose. The next morning was a bit messy, several times. It seems to have settled down now and other than a little bit of a rash that cleared up fairly quickly, she doesn't seem any worse for it.

I got some new nutrition bags to try that do not use the pump, but just gravity. They have a clamp on them, so that between that and the height of the bag you can have good control of the rate. I thought these might help with meal time larger feedings. I tried it out yesterday. It was not without its problems. When I put her to bed last night, I should have used a new bag and the pump (hindsight is 20/20), but I thought "I'll just slow the rate on the gravity bag and it'll be fine". Well, I slowed the rate down, but just after leaving the room it must have gone to nothing. When I woke up this morning and checked on her, she hadn't gotten much of the nutrition in her. So yesterday, she didn't get nearly enough. Uugh! I guess there is always something new to learn.

Yesterday was a busy day of moving furniture around in Daddy's office. Grandpa brought a table (work surface) for the "reception" area. It was a lot of work (mostly on Daddy's part), but the office is looking much better. Daddy had to do a lot of cleaning and organizing, too, as part of the project. With the furniture moved, he was able to get some of the trim in place and nailed in. I'm sure he feels better having gotten a lot of work done in the office yesterday.

Meanwhile, his cold seems to be bothering him and I'm not feeling to well either. I guess that is what happens during the winter.


Sunday, January 15, 2006

Some Stats

Wow -a quick look at the last couple of days of visitors shows that Rebekah really is reaching the world!

Nearly 48,000 visitors since May 2005. Increasing rankings on the search engines; just searching "Rebekah" will get you here in the top 20 of almost all search engines now! And lots of people commenting and being touched.

But more than any of this, WE are being so blessed by the daily comments and knowing that Rebekah's story and the urging to "love your own kids that much more today" is being seen so much every day. PLEASE keep spreading the word!!!!


Saturday, January 14, 2006

A Spectacular Day

Today was an absolutely spectacular day.  Rebekah is bouncing back very quickly from the last chemo treatment and is, in many ways, acting very normal.  On top of that, Rebekah was REALLY happy to have guests today.  

Kelli, Jake and their daughter Kenna came to see us today.  Jake is an electrician and helped sort out some small electrical issues AND added a couple of motion lights for us which was a HUGE deal.  While that was going on Kelli and 3 year old Kenna played with the girls just about all day in the new play room.  This is was so helpful as mommy was suffering from a headache and it allowed her to get away when the noise was getting too bad.  This family was, until just before Christmas, complete strangers and then they came across Rebekah’s blog and have been in contact ever since.  They came from quite a ways away, traveling several hours to see us and help out.  How wonderful their hearts are.

On top of getting the lights installed having mommy and the girls taken care of allowed daddy to get some more finishing touches on the playroom/remodel.  We have not been able to find anyone to do some shelving work so I took it on myself.  We didn’t expect anything fancy (which was good) but over all they came out okay.  It was the first time I have ever touched a router!  I learned a lot and they are not perfect but we hope they will work.  It was really nice to be able to focus on something so completely different than everything that has been going on.

Next week Rebekah has a couple of clinic appointments to check blood work and over all status but nothing that should be too eventful – let’s hope it stays that way.

We have also received word that Gage is not doing so hot.  If you don’t mind, head on over to his page and add him to your prayers and drop his family a note to let them know that we care and you care.

Our next (and LAST) chemo hospital stay is about a week away.  Please pray the week leading up to it and the entire week of chemo stay uneventful.


Friday, January 13, 2006

End of the Day Friday

It has been an "at home, don't do much of anything" day. We have hung out and played most of the day.

Rebekah's teacher came by and played with both girls for a while this afternoon. Both Rebekah and Sarah seemed to enjoy the time. I think the girls get tired of Mommy and like "new" faces. Jennifer (the teacher) noticed several developmental growths since she last saw Rebekah, which was before Rebekah was diagnosed with cancer in April 2004. We have seen them as well, but it is always good to get an outside perspective. Thanks Jennifer for coming!

For those of you who don't know, before Rebekah was diagnosed with cancer, she had been involved with Early Intervention through the local school system because of her development delay issues.

The girls have played well together, at times, today. Rebekah would say she wanted a toy and Sarah would go get it for her, they were taking turns playing with a particular toy, they both worked at filling a stocking full of peek-a-blocks, etc... At other times, they have been beating up on each other. Rebekah has spent time in time-out for hurting her sister. Sarah has had some time-out for hurting Rebekah as well. Uugh!

The stool softener seems to be working. She had a couple of soft (although not runny) stools today. I decided to go ahead and give her one more dose of the stool softener tonight. I hope that I'm not sorry for that.

The claritin seems to be helping some, but I'm not sure how much. She continues to sneeze periodically, but she hasn't seemed in as much pain as she had been. We will continue to monitor her situation.

New friends, Kelli and Jake, are coming tomorrow to help us get some things done. It should be a good time and we are looking forward to it.


Thursday, January 12, 2006

Another Day Drawing to a Close

Today has drawn nearly to a close.

After an early lunch, we (the girls and I) went into clinic early this afternoon. Unfortunately, Sarah did not nap in the van on the way in, like I hoped she would.

Her counts were up today, so it was a good thing that we had not given her a shot last night. Some of her complaints of pains could be from the high White Blood Count causing bone pain. Had we given her the shot, the counts would have gone higher and could cause even more pain. Doc said that with her platelet count up right now, she could have an occasional dose of Motrin which might help better with bone pain.

Doc gave us a prescription for another laxative (Miralax), so we will see if that helps. Also, we got a prescription for Claritin to see if that will help with the sneezing fits. We actually got an over the counter equivalent in liquid form.

After clinic, we dropped off the prescriptions and then headed up to visit with Josh and his mom. On the way, we saw Madeleine's mom and chatted with her for a few minutes. We took a little walk with Josh and his mom April and on our way, we saw Warren, his brothers, his sister and Mom. It is good to check in with other families, but we never really want to see anyone in the hospital. I didn't find out until after I got home that Kennedy was in the hospital, too. Otherwise we would have stopped in to see her, too, if she was up for company. Sorry Kennedy.

The other night, Rebekah was complaining of owies and when I asked her where she pointed to her tummy. That was a new one for her, usually she will point to her mouth or her bottom. When I asked her if she wanted some tummy medicine, she was adamant that she did NOT want tummy medicine. What she did seem to want was lotion. I'm not sure why, but that is what she wanted and with a little lotion, she settled down. Go figure! A couple of times today, she has complained about owies and pointed to her tummy. And, again, lotion is what she wanted to fix the problem. If it helps, I will go for it.

As we were leaving clinic, Sarah had been in the stroller and looked like she wanted to go to sleep. Rebekah said that she wanted to go in the backpack. Usually, I put Rebekah in the stroller and Sarah in the backpack. With Sarah trying to go to sleep and Rebekah wanting into the backpack, I decided we would try that. The backpack is rated to 40 pounds and Rebekah is just less than that, so we weren't over the limit. It was quite a bit more weight on my back and hips than I'm used to, but it worked out ok. This evening, my knee hurts but my back seems to be doing ok. We'll have to see about tomorrow. Sarah never did fall asleep in the stroller, but she was out pretty quick once we got back to the van.

Rebekah is not cooperating at all with bed time. It is often taking two hours or more to actually get her to sleep. That makes it pretty rough.

Well, I feel like I've rambled on tonight. One day at a time...


Wednesday, January 11, 2006

Cranky Girls

It has been a day of cranky girls. Sarah continues to break in her molars and Tylenol and Teething Tablets aren't always enough. She wants Mommy's attention all day long.

Rebekah is not feeling well. She is having trouble with Constipation and in a lot of pain when she does have a bowel movement. I gave her a dose of Colace (stool softener) on Monday and then another one today. Yesterday she seemed to be doing ok (at least she wasn't hurting when she passed a stool). I hate to give her too much stool softener and then have severe diarrhea issues, but at the same time I don't want constipation. It is a double edged sword.

I want to help with pain, but Tylenol can mask a fever and Morphine can cause constipation. So I have to be careful with both. She can have them, but they are not without side effects. Uugh!

In addition, she is sneezing quite a bit and in a lot of pain with that. I'm keeping her up on benadryl, but she starts the sneezing fits before time for the next dose. I can't keep her comfortable and that is pretty tough.

She is not tolerating her food real well and so it is mostly running while she is sleeping. So much for "normal" eating cycle. Today, she hasn't even tolerated it while she's sleeping, so she hasn't gotten much nutrition in today. I won't freak out about one day, but I hope it doesn't go on for too many.

We will go back into clinic tomorrow for blood counts and check up. I opted not to give Rebekah a shot tonight with the hope that her counts are on their way up (with the doctor's approval). We will give it tomorrow, if her counts indicate that she should have had it.

Daddy seems to be getting sick again. That is not good!

Rebekah is getting more and more verbal. Here is one example. This last week, when she has complained of owies and I asked if she wanted owie medicine she has started telling me "blue". The only medicine that she has that is blue is the morphine. She has objected when I brought her anything else. So now, she is asking specifically for morphine. Oh joy!


Tuesday, January 10, 2006

A Bit of a Rough Day

It has been a day. Sarah woke up a little after 7 this morning and I went in to find her binky and give it to her. She took that and layed back down. About then I realized that I had a bad headache so I took some Tylenol and crawled back into bed. About then I realized that it wasn't just a headache, it was a migraine. Uugh! Daddy was already up and working.

Rebekah woke up about 7:45 and wanted Daddy, so I had to get up and check on Rebekah and then see if Daddy could come and "love" on Rebekah and tell her she needed to go back to sleep. He was able to give her some loves and she seemed to go back to sleep, so that was good.

I finally got up about 9:00 and the headache was better, not gone, but better. Sarah had her breakfast. About 9:45 or so, Rebekah was screaming in her bed. I went in to check on her and she had thrown up. She needed cleaned up, the bed needed changed. All the while, Sarah is in her highchair and I'm having to keep her with food and make sure that she stays IN her highchair. Just what I wanted to deal with when I'm not feeling well.

Both girls took a late morning nap. When I put Rebekah down, I started her nutrition up again. After 30 minutes or so, she was throwing up again. Uugh! It was turning into one of those days. That was the end of Rebekah's nap. So much for Mommy getting a nap.

At that point, Rebekah and I worked on cleaning up the play room, so that we could see the carpet. She did a good job of helping. This evening, we can see a little more of the carpet than we did this morning, but I don't know that it is much more. The girls have since had much fun getting the toys back out and spreading them around.

Today, we got a care package from Cherie from New York, full of yummy treats as well as soaps and things. Thank you so much Cherie! It was very thoughtful and greatly appreciated.

Rebekah continues to play the "I want whoever is not taking care of me right now" game. We are trying not to let her get away with it. Oh the games children will play! In addition to that one, there is also the "I'm going to turn my nutrition pump off and on as I see fit" game and "I'm not going to stay in my bed, like I'm supposed to" game.

The other morning, about 1:30 or so, I was hearing Rebekah. At the time, she was not connected to her nutrition. She managed to open her bedroom door and by the time I caught up with her, she was in Daddy's office (which is attached to the house, but through another closed door) and calling for Daddy. She seemed to think that since Daddy wasn't sitting in his chair, he must be outside. She was at the office door (to the outside), knocking on the door and saying Daddy come. I tried to explain to her that Daddy was sleeping and that she needed to go back to sleep. At that point, she wanted her food connected back up, so I started it up at a very slow rate. Lately, she hasn't been getting very far out of bed while she's connected, so I figured having her connected would keep her in bed.


Monday, January 09, 2006

Clinic Day Today

Oliver and his family continue to be heavy on our hearts and minds today. Our problems seem so trivial in comparison to what his family is going through right now. Please continue to pray for them.

Today was a clinic day. Rebekah's counts were doing OK. Her hemoglobin is a bit low, but not in need of a transfusion. Her ANC was within the normal range. Doc expects that her counts may continue to drop, so we will continue the shots for at least a couple of days. We'll go back in on Thursday for another set of counts and check up.

Both girls have been trying to drive Mommy and Daddy crazy today, but I guess that is typical childhood behavior and we should be thankful for that.


Sunday, January 08, 2006


Grandma A came over to help today; that was nice and very very helpful. But nothing right now seems that important in our lives.

Please pray for Oliver and his family.


Saturday, January 07, 2006

A Busy Saturday

Rebekah woke up this morning and I heard her knocking on her door. Daddy, who was in the living room, panicked. He thought she was still connected to her nutrition and wasn't sure whether she was in trouble. I knew that I had disconnected her before I went to bed, so I wasn't too concerned.

I have been trying to get her daily nutrition in before I go to bed, so that she can be disconnected most of the night. Having her nutrition off at night does several things: get her to more of a normal food cycle (during the day and not at night), allow her to toss and turn during the night without fear of pulling out her g-tube "button", and less likely for her to throw up overnight.

Sarah has figured out how to wiggle herself out of her high chair. At breakfast, she wiggled out and was standing on her seat. We can't leave her alone for a minute! I snugged all of the straps up, again, and have been criss crossing the shoulder straps. We'll see if that helps keep our little escape artist in her seat.

Grandpa had a bookcase and cabinet that he was giving to us, so we decided to get out of the house and go get them. That meant cleaning out the van enough so that the furniture would fit and then loading in all the required diaper bags, medicine bags, etc... Not to mention, getting the girls dressed and ready to go. Rebekah seemed to enjoy going "bye bye". Once Rebekah could see Grandma and Grandpa's house, she started saying Grandma. Can't get anything past her.

The girls stayed in their seats in the van while we loaded the furniture (Dad and Grandpa did most of the work while I supervised). Both Grandma C and Grandpa were able to say "hi" to the girls. Grandma C brought out some sliced cheese which Sarah was eating up and Rebekah wanted some of, but never really ate. Sarah was eating so much that Grandma went back in and cut up some more for us and brought some crackers. We snacked on that all the way home.

Once home, the girls settled down for naps and Mom and Dad worked on getting the furniture in and situated. It is not all situated, yet, but good progress has been made. Mom was able to get some of the boxes of books unpacked and back onto the shelves. They have been in boxes since late October when we prepared to get the new carpet and hadn't been put away because we didn't have a "final" place for them. We didn't want to unpack them only to have to pack them up again to unpack them later.

It always feels good to get some things accomplished. It sure helps with the attitude. I'm feeling better today, not quite as frustrated, and I'm sure that is in part due to getting out of the house (as well as the girls getting out of the house and a change of scenery) and also getting things accomplished. I was up late last night (or should I say this morning) getting to some of the things that I haven't been able to get to for quite some time. That felt good, too, and I actually wasn't feeling "too" tired today. Tomorrow may be another story...

There are so many cancer kids on our hearts and minds - Oliver, Josh, Kennedy, Madeleine and Nikolette (and their families) are all going through some pretty tough times right now. Please keep them in your prayers as well as Rebekah, Gage, Warren and Kaitlin.


Friday, January 06, 2006

Another Day is Done

It has been another one of those days. Rebekah has thrown up several times today. She seems to have the cough back that leads to throwing up. Uugh! I'm trying to dilute her nutrition again and see if that will help. One day at a time...

I haven't been able to get things right into the laundry because Daddy has had clients throughout the day and the laundry machines are in the office and would disrupt his appointments. Then again, I haven't been able to leave the girls alone or they are getting into trouble. So I haven't gotten much done today other than trying to keep up with the girls. So much for dishes, laundry, or much of anything else.

Daddy has had a busy day and all day long Rebekah has been asking for Daddy to do everything (once again). She doesn't take too well to Mommy explaining that Daddy is working and can't come right now to do it. When given the option to have Mommy get something for her or go without she opted to go without. If Daddy couldn't do it, she didn't want it. Sure doesn't help make Mommy feel good about herself.

The girls have been driving me crazy - they are not obeying, Rebekah just wants Daddy, Sarah is getting some molars in and cranky because of that and they are just generally not making me happy. At times, I have just about had it. I had to stop and take in some deep breaths today before getting back to where the girls are at. It has been rough.

I realize that when I don't feel good about myself or when I'm tired, I don't have the patience that I normally have. Then I have to remind myself that it is not the girls fault and I should not take it out on them. It is not easy.


Thursday, January 05, 2006

Made it Home Last Night, Sorry for No Update

We made it home last night. By the time we got home, it was about 7 pm and time for dinner and then getting the girls to bed, all the stuff in from the van and much needed sleep. I didn't get much sleep the night before, so I pretty much took care of the things that had to be done and then crashed. I should mention that Grandma M brought Sarah home and brought dinner for all of us and then helped get both girls to bed. Thanks Grandma M.

Today has been a hectic day. Daddy has had a crummy day with everything seeming to go wrong. I've been dealing with cranky girls most of the day and couldn't get them to both nap at the same time, so I never got a nap. I did rest for a while while Sarah played around me and Rebekah slept- Daddy said that wasn't fair. I'm not sure what "isn't fair" about it, it's not like that is great rest. This evening, while I was making dinner, the girls were not cooperating. Uugh!

Rebekah went to bed about 7 pm at her request, but woke up about 8 and won't go back to sleep. She is having to stay in bed, and not at all happy about that. If Mommy checks on her, she wants Daddy. If Daddy checks on her, she wants Mommy. She does not like it when she does not get her way. That is going to be a tough attitude to break. She has had a lot of attitude recently. Over the last week or so, she has pretty much requested that anyone but Mommy take care of things for her. That, of course, makes Mommy feel unappreciated.

It is turning out to be one of those weeks. As is becoming normal, once we are home from the hospital after chemo, we can expect nausea, vomitting, pain, and an otherwise pretty cranky girl. Not to mention a tired and less patient Mommy. This week is no exception. Her counts will be dropping, so we also have to watch for fever and any signs of low counts (lethargia, bruising, etc...).


Wednesday, January 04, 2006

The End Is Not The End

Just received a phone call from mommy. Last night was a “difficult night” with throwing up, machines beeping, crabby girl(s?), poking nurses and who knows what else she didn’t say. She didn’t sound too rested. Rebekah, however, sounded rearing and ready to go. Wouldn’t that figure. I did get to talk with Rebekah on the phone and for the first time ever she put “bye bye” and “love you” together before she handed mommy back the phone.

Sitting here at the office while they are in the hospital is very difficult for me emotionally. On top of not being with them I am trying to get my office cleaned and organized and was looking for a photo album into which to put pictures that many of my families sent me over Christmas. I went to the house and looked for an “empty” with all of the family albums. Of course that started a trip down memory lane as I browsed all of them. It’s amazing “how long ago” the past seems and how fond I remember much of it but at the same time how unimportant it is compared to the here and now and the few precious moments we have with our children.

In my conversation with mommy she told me that the “post chemo scans” have been scheduled for the week of February 6th. This is really the first time since July that we will know whether all of this is doing any good. Actually we know it is doing good because Rebekah is still alive and there was a very large likelihood she would not be. We (or at least I) are/am scared to death about this. It’s almost like we are totally back at the beginning sitting on pins and needles wondering “What If…” I thought we would be excited to be done and now I am emotionally drained just thinking about it the last few minutes.

I hope the prayer requests are obvious.


Tuesday, January 03, 2006

In the Hospital and Lots of Visits

I'm sitting here in the hospital. The internet connection in the room is working just fine, which always helps me feel connected to the outside world. Rebekah is finally sleeping. She wouldn't take a nap and was starting to look a little droopy by 6 this evening.

Rebekah's counts were good for allowing chemo, so we were admitted. We had some trouble getting a good urine sample to test early today, due to several poopy diapers and then diapers with little urine in them. So it wasn't until about 3:30 this afternoon that we were able to start chemo (after getting her started on fluids and getting her "lunch" nutrition). So, I expect it will be late afternoon tomorrow before we can head for home. It is still nice to only have one night in the hospital.

Speaking of her nutrition, I'll fill you in on how she is doing with that. Since she wasn't tolerating the bolus feeds, I have been running her food through the pump at a fast rate (200-300 ml per hour) to get her somewhere between 200 and 300 ml (8 ounces is approximately 240 ml) of nutrition at a time. She has been doing pretty well with that. I figure that is a more natural way of doing it. After all, who would want to guzzle 8 ounces of milkshake within 5 minutes (like the bolus feeds would do).

So at lunch and dinner, she gets larger amounts and then if she's napping or at bed time we make up the difference. I'm working to get her to tolerate more at a time, but the pump I have at home won't go any faster than 300 ml per hour, so more volume means more time. She does have vomitting sessions, but they don't seem to always empty her stomach and they are not an every day occurance. In general, her weight is staying stable.

It has been a day of socializing. Rebekah is never a fan of sitting in her room and today was no different.

We saw Gage and his family while we were in clinic. It was good to see them again. They have spent the last 3 months in Boston getting a different type of Radiation. It is never "great" to see anyone in the hospital, but if we have to go through this, it is nice to have some friends who we can commiserate with. They are getting another round of chemo, so they were admitted today, too.

We found out this morning that Kennedy was moved out of ICU and onto the regular pediatric ward, so we got a chance to say "hi" to her and her family, too. She is doing better, but still needs a lot of prayer.

Josh was here with a day full of procedures and exams. We were able to catch up with them and visit for a little while.

Jill and her son Will stopped by for a visit. Will had a procedure done here and when they heard we were in decided to try and stop in. It was good to see them. Will hadn't eaten anything for many hours, due to his procedure, so he was eating while we visited. Rebekah kept throwing her sippy cup on the floor for Will to pick up. Poor Will, who had a sore back from the procedure, kept bending over to get Rebekah's cup. We didn't let that go on too long.

Grandma C stopped by and brought Mommy lunch and then took Rebekah out for a wagon ride. Then there were visits from Child Life and Art Therapy and making paper in the Star Lounge with Child Life. And, it was movie night, so we had to go down and check out the munchies. Rebekah decided that she wanted to stay and watch the movie. I think she had more fun playing with Gage and one of the other kids, but she was enjoying herself. That was until she started to melt down. At that point, we had to leave and get ready for bed.

She wasn't happy about going to bed and was working herself up. I was concerned that she was going to start throwing up, but she didn't. It took some benadryl and morphine and about a half hour, but she did settle down. Nurse Katie couldn't get a good set of vitals while she was all worked up, so she came in about 9:30 to do them. That seemed to wake her up and then she was screaming in pain. Mommy laid with her and sang to her and Nurse Katie got her some Tylenol and she seems to be doing better. Settling down, again, but it is now after 10 pm. Another day, nearing its end. Hopefully, Rebekah will sleep well and Mommy can get some sleep.


A Mix Of Things

Yesterday, the day off work for the holiday wasn’t a day off for mommy or daddy as daddy worked still trying hard to clean up his year end stuff and mommy worked on getting the Christmas decorations down.  Rebekah was a big help in cleaning up:

The girls were doing remarkably well.  Medically Rebekah was just fine.  This was a change from how things have been but not all that unexpected.  Just before we go in for more chemotherapy is usually when she is at her best.  We are off to the hospital this morning for blood tests (to confirm she is well enough to receive chemo) and to start the next round.  This is normally the short 3 day round and will be even shorter this time as we have “maxed” out on one of the drugs so we will not be receiving it this time.  It’s possible we will be home in 24-36 hours.

Yesterday mommy and the girls made cookies.  I think the girls mostly watched but Rebekah did like to turn the mixer on and off.  It is the first time in very very very long that mommy got to do something like that and that’s really neat.  She was making cookies for the other families of kiddos in the hospital.  Something about the holidays but it seems that all of our schedules are actually going to meet this week.  Mommy is “re-gifting” some of the kindness that has been paid to us.  

We also just wanted to say thank you again for all that everyone is doing.  Each and every bit of help just brings us to tears.  And what’s tough is knowing that we are still going to need more.  This is where we get torn.  Our hearts ache so much for all the other kiddos and their families and we want to share them and all of their needs with you but then at the same time we are afraid that there is a “limited” amount of help out there and if we share all of them with you that you will think our needs are over.  We know its not true and are grateful that there is unlimited amount of what we need most – prayer – available, but still we sometimes feel that way.  Then we feel bad for feeling that way.

Please pray for a quick chemo without complications as well as a recovery period better than we can expect.  


Sunday, January 01, 2006

Thank You

I just came across THIS POST on another Rebekah's web site. Please accept this as a very public "Thank You" to all of you Mr. Noblett's out there who made this one of the best Christmas' we have ever had.


Happy New Years

Today, New Years Day, was a day that we did about nothing. We sat and veg'd out throughout most of the day. What this really means is that things were going okay which is great.

Rebekah slept until about 10:15 when we got her up because Grandma and Grandpa were stopping by to say hi. She was throwing a fit when she got up but stopped when I told her she had to be a big girl and no crying if she wanted to see Grandma and Grandpa. It's like an on off switch with her - unless she is really hurting she can do what most little ones do and let the tears and screaming flow or stop just this instant. It is really nice to see her being more normal.

The story started to change this evening, however. It was time for a dressing change for Rebekah. The dressing that covers her central line covers about 1/4 of her chest, nipple and under her arm pit. It is VERY traumatic to have that changed as it pulls on some very sensitive skin. The bio-patch that hides under the dressing and kills any bacteria that might get in there is only good for 7 days so no matter how good the dressing looks it still needs changed on day 7 or Rebekah could get a dangerous infection. Tonight, like always, was difficult. Mommy holds her down and daddy has to remove the dressing, don sterile gloves, sterilize her chest including scrubbing which she hates and get a new bio-patch and dressing on as well as appropriately taping the tubes down. All of this while Rebekah screams "no no no no..." I sometimes wonder if it is tougher on us or her? After the dressing change the feeding tube connection and the cleaning and injection of heparin into her central line was a piece of cake.

While we were doing this in the room next to where Sarah was sleeping (hah!) we started to hear Sarah crying. Thinking that we woke her up with all the screaming daddy went to see if she needed a binky, changed or ??? What we found is depicted in the picture below. Am I a bad daddy because rather than fixing the situation my first instinct was to break out laughing and run and grab a camera? I hope not. Now kiddies, take this as a lesson - DO NOT try and take your jammies off when you are supposed to be sleeping.

While grabbing the closest camera at hand and then looking through the pictures for the one of Sarah above I found that it also had this picture of Rebekah and Sarah on it. Not exactly sure when it was taken but just before being diagnosed as she still has her hair but it does look like you can see the tumor on Rebekah's left side.


Statistics and Links

This blog has sure taken on a life of its own.  It was designed in late April to tell keep our immediate family up to date.  Now we have had over 43,650 visits from all over the world during 2005.  What a surprise and an outreach that Rebekah has had on the world.  And what an uplift you have all been to us.  We try really hard not to care about the numbers but they are definitely a sign as to who is being touched and directly proportional to the prayers and contributions so they do matter a bit.  Please continue to share Rebekah with the world so we can all be blessed.

We have made some changes to the Links section.  We have placed links at the top to some of the other kiddos that we come across locally somewhat regularly.  I know there are so many “causes” out there but we beg of you to check out some of these pages and add these kids to your prayers.  If you are so inclined it would be great to see some comments to their families too but please read through their blogs and try not to be too offensive as some of these families are pretty turned off on prayer right now.  That’s a subject we would like to talk more about, but not here and now.

The “Other” links are those that link to us, send lots of visitors this way or for some other reason have caught our eye.  They are in no particular order but they are all special in some way.  Check them out and if we are missing something, let us know.

HAPPY NEW YEAR.  So far it has been 8 hours and 45 minutes of relative peace in our household.