What a Day!

What a day today has been. It started with lots of potty problems. I woke up about 6 and needed to use “the facilities”. As I was finishing up, power went out, came back on and went right back out, so I found myself in the dark without running water. Ugh! Power stayed out for about 45 minutes, at which point the girls started waking up. When I went to get Rebekah up, she had soaked through in a major way, so I had to change her sheets.

After breakfast, the girls played for a little while in the playroom and then Sarah started to say she wanted to go night night and Rebekah said that she wanted tummy drinks. I put Sarah down in her crib and got Rebekah connected to her nutrition. Not much later, Sarah was fussing and she wasn’t stopping, so I went in to check on her. She had managed to get her pajamas off as well as her diaper and peed on the mattress. So, she got a new diaper, pajamas back on, new sheet and mattress pad and laid back down. She seemed to fall asleep. Rebekah wanted her tummy drinks stopped and wanted to go night night herself, so we took care of that.

When Sarah woke up from her nap, she was making quite a bit of noise. When I went to get her up, she had gotten her pajamas off, diaper off and peed on the mattress. She got a new diaper and then dressed for the day (including a onesie to try to help with the undressing). It sure makes me think that perhaps potty training should start happening quickly!

This afternoon Rebekah, Sarah and Mommy headed into town for a physical therapy evaluation. Rebekah did a pretty good job of cooperating with it. And she remembered so many of the things that were there – like the play kitchen and the balls. She has some foot issues, including tight hamstrings. The physical therapist is thinking that Rebekah could benefit from orthotics for her shoes. She was going to put a little more thought into it and find some resources for us and get back with us. Rebekah’s left side is weaker than her right side, so we will want to work on strengthening her left side. I will say, however, that this was true before cancer. Now that the cancer treatments are complete, we can focus on some of these other needs.

After the evaluation, we headed over to Grandma A’s school and dropped Sarah off with her so Mommy and Rebekah could go to the ENT’s office for an evaluation. The kids had left school for the day and it was almost time for Grandma A to leave as well, so it worked out well. Thanks Grandma A for watching Sarah – it was a great help.

We didn’t have any eminent concerns for the ENT, but wanted to get him involved in Rebekah’s care now, so that he could be monitoring her as well. He really didn’t see anything that needed work now, which was good. He did reiterate some of the “possible” side effects and issues that we may have to deal with such as hearing loss, growth differences between the right and the left side with the need for corrective surgeries, dental issues, etc… In addition, he mentioned several things that were either new or explained as potentially chronic problems such as ear wax buildup (he suggests that we put drops in her ears once or twice a week to avoid a buildup), rhinitis because of the damage to her sinuses (we’re already seeing lots of running nose/sneezing symptoms so we have her on Claritin), drying of the secretions in the nose (especially on the left side) and possible chronic issues with sinus infections.

He talked about how it is difficult to say what Rebekah’s needs will be or to even think about giving any sort of percentage of possibility of any specific side effect. Ewing’s Sarcoma is not very common in the face and not very common for children of Rebekah’s age, so it is not like he has seen many patients in Rebekah’s situation. He has, however, seen patients with chemo and radiation to the face. Some have had very little disfiguration and limited need for correction, while others have had great disfiguration and much need for correction. It is hard to say what Rebekah’s case will be, so we wait and see and deal with her issues. All in all, it seemed like a pretty positive appointment. He doesn’t need to see us again for a year, unless we have issues and want to see him. He would like to see us after Rebekah has her annual Audiology exam and other scans and he wants copies of those reports for his files.

Tomorrow, we have to be up early and head into the hospital for Rebekah’s kidney function test. Her nutrition has to be cut off at 2am, so that means Mommy will have to be up at 2 and then Mommy and Daddy will be up at 6 or so to get ready to go. Should be fun!

Rebekah Makes International News

Canada counts as International doesn't it? Please check it out:

Rebekah's story has been picked up by a new "E-Zine" put together by Darlene of WWJB - What would Jesus Blog. Rebekah is one of the cover stories this month.

Speech Therapy and Back to School

Our busy week has started. I've been trying to get the girls used to a mid-morning nap, so that we can be gone from late morning until late afternoon and they aren't too crabby by the time we get home. Rebekah's classes are in the afternoon and so I thought it would be a good idea to try to schedule their other appointments in the afternoon and plan on morning naps. Today was the first day that we really had to make it work. They did a good job of settling down for naps, both girls even asked for their nap.

Our first stop today was Speech Therapy. We went back to Kathy, who had been seeing Rebekah before she was diagnosed with cancer. Rebekah did a great job of working with her words. At the end of the session, Kathy got out some snacks (to see how Rebekah was eating). She put the half pretzel in her mouth and I think Kathy was a bit concerned - not sure how well she would handle it. She chewed it up really well and was asking for more. Kathy commented that Rebekah has improved in her language skills since she last worked with her. She was excited about that and had kind of expected that she might have regressed throughout her treatment. So, all in all, it was pretty good news.

Then we were off to school. We put Sarah in the stroller, Rebekah's backpack on and headed into the school. Rebekah seemed to remember being at school. She knew where she wanted to go and headed toward her classroom. We arrived a little early, so that we could talk with the teacher and nurse a little before class needed to start. We let Sarah out of the stroller and she was excited to be in school - she loved playing and coloring and having fun. Rebekah seemed right at home in the class. It is a different class than she was in before, one that will hopefully challenge her a bit. When we came back to pick her up, her teacher reported that she did really good. I hope to have many more reports like that.

She seems to want to learn, so we hope that with school and the various therapies she will quickly develop her skills. Only time will tell...

It has been tough to get much nutrition in her today, so she will get much of it over night. Hopefully, we can get into a good cycle and not need so much at night. One day at a time...

A Busy Weekend

We have been busy. Saturday, Daddy spent a lot of time working outside and Mommy spent a lot of time cleaning inside. Daddy is a bit sore from all the work he did and sick as well, so that is not good. The girls played and had fun.

Saturday night, Mommy's company had a company party and Mommy and Daddy were able to attend - thanks to Gaye who came and watched the girls for us so we could get out. Mommy has been on leave since Rebekah was diagnosed with cancer, but it was good to see everyone and see the new office space (as of earlier this month), not to mention be social and without the girls for a few hours.

Rebekah has been doing a good job of eating. She still has a long way to go, but we are happy to see improvement. Saturday, she sat with her daddy and ate probably a cup and a half of popcorn. It was amazing. She hasn't done that in a very long time. She used to love to sit with him and share his popcorn - it was a special Daddy/Daughter time. It is good to see her able to enjoy that again. Daddy enjoyed it, too. I think I saw tears of joy in his eyes. She continues, at times, to have problems with throwing up. Most of it, seems to be her tummy getting too full.

Some days, she is able to get enough nutrition in during the day (and early night hours) so that she doesn't have to be hooked up all night long. Other days, she gets nutrition all night long, but at a slower rate.

Sarah has been wanting her own fork or spoon at meal time. Today at breakfast, she was doing ok at stabbing her eggs with the fork and getting it into her mouth. At times, the egg would fall off before making it to her mouth and she used her hands at times. At dinner, she insisted that she control the spoon and that Mommy couldn't do it for her. Dinner was soup, so that was rather interesting...

An Interesting Perspective

Two posts in one afternoon, wow! But this thought is just too important to let pass by.

Tonight was dressing change night. If you have been following closely you know that this has been on of the most traumatic parts of the entire treatment. Rebekah has a 5x5 "bandaid" over the area that her central lines come out of her chest. The "bandage" or dressing covers her left arm pit and her left nipple. The area under it has not, with the exception of seconds at a time during the once a week dressing changes, seen or felt the air in nearly 10 months. You can only imagine how tender it is and what it is like having that dressing ripped off. Tonight, like the last few times, Rebekah did SPECTACULAR!

About 1/2 way through the change it hit me - this is the LAST time we have to change the dressing. And then, when changing the caps (or ends of the tubes that come out her chest) it hit me again - we have NEVER had a "central line infection." Yes, we are quite particular about scrubbing and scrubbing and sterility when it comes to her lines, but it is almost unheard of to not have an infection at least once. Upon that thought I stopped what I was doing and scrubbed everything again.

Then the funniest thought we have had in a long time hit us. WE ARE/HAVE BEEN REALLY REALLY LUCKY!!!!!!! Throughout this whole process God's hand has protected us. With one small exception during radiation we have not had to stop or limit her treatment in any way like others have. As much time as we did spend in hospital, we still didn't have to spend as much as others have; which is a direct result of not having the complications that others have had. We have been able to follow the 'protocol' treatment almost exactly, which few others have been able to do. We have not had to go away to receive treatment in another city like others have. We could go on, but the point is made. After what we have been through since April last year we find it really funny to say, WE HAVE BEEN LUCKY.

THAT is what you call perspective. Please praise God for the blessings He has bestowed upon us and ask Him right now to bless you with a little perspective on your own life.

Friday Afternoon At The Playstructure

This afternoon about 3pm Rebekah came into Daddy's office with her new Dora backpack on asking to go outside. He told her she couldn't go outside because she had bare feet. She left and came back with socks and shoes. Hmm, stuck. The sun was shining just a bit and it was actually quite beautiful out. Daddy had been working solid at his desk since 6am so it seemed kind of okay to take a short break. We went for a walk around the property holding hands and ended up at the playstructure. Here are the results:




(Notice the trailer in the background - having not moved for nearly a month - YAY!)

Build a Bear, Shopping Trip, Doing Well

This gift card came in the mail this week with a letter explaining that they had heard about Rebekah's health issues and wanted to give her a gift card so that she could create a bear. Thanks to Denise aka The Queen for contacting them, that was a really really nice gesture! One day soon we should be able to get out and use it. When we ask Rebekah if she wants to go Build A Bear, she says that she wants to build one for "Chi Chi" (her sister).

It has been a good few days. Rebekah is continuing to eat and it seems like more and more each day. The other night for dinner, she must have eaten between a quarter cup and a half cup of food. She just continued to eat and eat and eat. It amazed both Mom and Dad. We just watched with joy in our hearts and tears in our eyes.

I made the mistake of trying to cut the amount of dilution in her food yesterday and it promptly came back up. Ugh! I did manage to get her away from the white couch and new carpet and before it all came up. And she (sort of) cooperated with using the yellow bin instead of pushing it away completely. So we didn't have quite as big of a mess to clean up. Afterwards, she did a great job of helping with a sponge bath (always a good idea after throwing up allover herself). I guess she still needs her nutrition diluted. One lesson learned.

Today, Mommy and the girls went shopping. It has been such a long time since we've really been able to do that. It felt good to get out of the house and not have to worry so much about who Rebekah might come in contact with and what she might "catch" while we are out.

We went to Toys R Us - not the best place to take two kiddos. They kept wanting to divert Mommy and I think would have tried to buy the store out, if they could have. As much as I might like to buy them everything they want, I just can't afford to do that. We did need a few things though, like potty training supplies (so we can work on that one day soon) and placemats for on the table (which they don't carry) and some other things. I was able to use some gift cards that we had been given. It is always great to be able to get the things we need with gift cards.

Then we went to Target and picked up a few more things - a watch for Mommy (my old one is irritating my skin and the giver of the gift card told me I was supposed to buy something for me), some Dora placemats, and a Dora backpack for Rebekah to take to school with her when she goes back next week (her old one broke a strap). In case you didn't know, Rebekah loves Dora.

We are so thankful for all the love and support we have received and continue to receive. It is such an encouragement to us. Thank you for everything you do for us!

Next Wednesday morning, Rebekah will have her kidney test done, which requires anesthesia and then Rebekah's central line will be removed next Thursday morning. We were hoping to get them both scheduled for the same day, but no luck. Next week will be a busy week: Monday is speech therapy and school, Tuesday is physcial therapy evaluation and ENT evaluation, Wednesday is kidney test and maybe school, Thursday is central line removal surgery and Friday is occupational therapy evaluation. I guess we'll have to wait and see how we all hold up after all of that.

We are so excited to hear that Oliver is in REMISSION and he got to go home for about a week (if all goes well). Please continue to keep him and his family, as well as all the kiddos fighting cancer, in your prayers.

Pictures from Yesterday

Rebekah, all smiles with her friend "Casey The Elk" (The stuffed animals are provided by the Elks to the Casey Eye Institute). This is the beautiful face you get when you ask Rebekah to smile.

This, however, is the face you get when someone takes her Elk away. Don't mess with this girl!

Tuesday Noon and Results

Sorry for the double post this morning - don't know why it did that. It said the first one didn't "publish" so I did it again...

We are back in what, since radiation at least, was one of the shortest anesthetics/surgeries that we have had. Debbie, God-Sent Debbie, came and got Sarah while we were in the waiting room at 7:15 am and brought her back after we were done about 10:30.

Things were a little rough with the anesthesiologist. We did not know him and he did not call last night to talk about Rebekah and what was happening or what we wanted. He was a bit put off by daddy taking care of "his stuff," connecting lines, prepping Rebekah and such. Daddy could see that he was getting short and apologized for "stepping on his job" but daddy also told the doctor that we were going to control as much of Rebekah's treatments as we could. Things went okay. Rebekah went out real well and woke up pretty fast - though extremely grumpy.

Rebekah was so grumpy that there was no consolling her nor changing her out of the hospital jammies so she came home in them. Just another set to add to the collection we guess. She continued to be a bit grumpy for most of the way home and was pretty upset at mommy who gave her the "red" owie medicine (Tylenol) and not the "blue" owie medicine (Morphine). By the time we got most of the way home, however, she had calmed down and was even doing well enough for a short visit at daddy's fire station and then home for a quick tummy tube snack and now off to sleep.

The results. This is good and bad news. The good news is that her vision does not appear to be physically affected by the radiation. Or in other words, there is no apparent damage and all things that they can test for seem to be working correctly. It is not a guarantee that she can see 20/20, but it is a step in the right direction. The tear ducts are a different story. The tumor and then radiation has left a "hole" of atrophied (dead) tissue between her tear ducts out of her eye and her sinuses. It is not that the ducts are "blocked," it is that they are not there. Significant surgery is going to be required to repair/recreate all of these ducts. For now the only "side effect" of this is that she is constantly tearing or crying out of her left eye. As long as that does not start to get infected we will leave the major surgery until other majory surgery in necessary to correct bone/jaw/face defects and/or growth issues. It may sound weird but we are actually grateful that this is "all there is" with regard to this issue.

Continued prayers for side-effect issues and continued cancer free. And while you are reading, head on over to Josh's site (link on the right) and read what his mom, April, wrote yesterday about not respecting cancer. It really affected me.

Very Early Tuesday AM Update

It’s just after 6am and we are packed and headed out the door to the hospital.  A totally new hospital this time so it will be interesting to see how things go.  Rebekah has an eye surgery to repair damaged tear ducts and hopefully they can check her vision and nerve issues as well.  

Very Quick Tuesday AM Update

It’s just after 6am and we are packed and headed out the door to the hospital.  A totally new hospital this time so it will be interesting to see how things go.  Rebekah has an eye surgery to repair damaged tear ducts and hopefully they can check her vision and nerve issues as well.  

Has The Good News Sunk In Yet?

Rebekah at the snowmobile outing last Saturday. Evan's dad so graciously sent us this picture today. Evan is another cancer survivor kiddo!

Based on the comments, both on the blog and private, you all have apparently noticed we have not been posting. We don't know why exactly. We had planned on a leaving the wonderful notice up for a day or so for impact. Then it became a taste of normal to do "nothing" cancer related. We actually have done a lot cancer related but we think you get the point.

Rebekah is doing absolutely spectacular. She is really coming back. Things are not perfect by any means but we sure would like to think they are getting better. The nausea and throwing up still continues to be a problem. Mommy is not getting much sleep as Rebekah will not go through the night without a problem coming up. We are still doing a lot of laundry with sheets and all.

During the day Rebekah is still showing an interest in eating. She is putting things in her mouth but usually taking them right back out. She sits through most meals with her sister, which is good. They are playing like sisters and even have some bumps and bruises to prove it. When they are in the playroom together there sure to be havoc. We are not sure who is the instigator - they build on each other.

Mommy spent most of the last week trying to get a handle on scheduling things for follow up/ side effect treatments. Tuesday we have a surgery scheduled at the Casey Eye Institute. They will do some work checking Rebekah's vision while she is under an anesthetic (How they do that is completely beyond us?!?!?!?!) and then will try and repair some of the tear ducts as well.

Mommy is also trying to schedule a surgery next week (if possible) to get Rebekah's central line out. It would be really nice to remove that source of possible infection and not have to deal with the traumatic dressing changes. Friday night Rebekah did SO SO SO SO SO well and barely cried at all during her dressing change. In fact she even helped apply the adhesive remover to help get the old dressing off. Daddy was so proud of his little trooper.

The following week, we have an appointment with an ENT, Rebekah back to school, Speech Therapy and evaluations for Physical Therapy and Occupational Therapy. That will be a busy week, but hopefully we can start to get back to a routine.

We alluded a bit to "other good news." It was not actually an attempt to cause speculation but it did. NO - we are NOT pregnant - at least we don't think so. We are not quite sure how we feel about being new parents again. Steve (who is in charge of www.HelpRebekah.com)spent a couple of weeks trying to track down a good deal on a freezer for us. None of the appliance stores wanted to "donate" or "help" in any way other than giving their "normal good deals". Daddy spent a lot of time trying to figure out what we could "get by with". We figured we could save some money by buying a manual defrost and picking it up ourselves. Then Kory's Foundation stepped in again and sent the following in an email: "We called the store and paid for the frost-free version for you AND they are going to call you to arrange for delivery..." WOW! We tried to protest but were told that their whole purpose was "to provide the best and do it so the families don't have to worry about things..." PLEASE SAY THANK YOU TO KORY's ALONG WITH US!

And as if that were not enough. The Children's Cancer Association sent an email minutes after we received the one from Kory's telling us that Les Schwab Tires had finally come through and had a set of tires delivered to the local store for our van. WOW again. We had kind of thought the graciousness of so many was going to be over along with the good news last week.

One of Mommy's calls was to get an appointment with a dentist. Josh's mom mentioned that they had found a pediatric dentist that had a lot of background in radiation and chemo, so we got the information from her and called her office to schedule an appointment. We scheduled an apointment in April - the earliest they had available. Ugh! But they put us on the list for cancellations. About 10 minutes after hanging up, they called back and had an appointment available the next day - Thursday. So we took it. We were a bit concerned that her teeth would be in pretty bad shape - knowing that the radiation had caused such bad sores in her mouth and there was so much time where she wouldn't let us brush her teeth or touch her mouth. The good news here was that her teeth looked pretty good, considering all she had been through. There is one molar that the dentist was a little concerned about, but Rebekah wouldn't cooperate to let her look at it. We scheduled another appointment for a couple of weeks, for a cleaning. Hopefully, Rebekah will be better used to the dentist office and cooperate for a good cleaning and exam.

Tonight Grandpa and Grandma brought all the grandparents, us, and Uncle Mark and Aunt TT along with cousins Michael and Jacob together for a congratulatiuons dinner at McMennamins Forest Grove. The service was, well not so good, and it took over an hour and a half from when we got there to get some food. The GREAT thing was how well Rebekah did. She didn't throw any fits and we only had to have "a talking" once and she listened to what daddy asked her to do very well. We don't know too many 4 year olds that could sit through that and she did great. In fact it was amazing that Sarah, Michael and Jacob ALL did great. THANK YOU GRANDPA AND GRANDMA!

While we were out at dinner the people at the table next to us (also having the same service issues) were "introduced" to us as their 20 month old came over behind our table and right to Rebekah. His mommy was a little surprised as she said he does not go to other people, including kids, at all. We found out in talking that he too has autism and it was amazing how much he was drawn to Rebekah. Rebekah was nice with him too and they seemed to have a bit of a sympatico between them. Yes, Rebekah continues to touch peoples lives. We have a very special little girl there. Hopefully we will get to talk to that family again as they live in the next town over.

Better cut this off here so it is not too long; but don't worry we are not giving up. It might not be EVERY day but we will be here updating you all as you are as much a part of our lives as Rebekah is yours.

Please Read On...

We know that many of you are waiting on results. I can tell you with absolute assurance that none of you are as anxious as we were (and in some ways still are).

The first thing that we want made very clear is that we serve an Awesome God. We have made it through this far by His grace and by His strength. Many of you have said that you don't know how we do it. We do not and could not do it on our own. Only by what God has given us, directly and through the support of so many of you all, have we made it this far. In what is probably the largest emotional outburst we have had since this first started we are able to say that Rebekah is cancer free.

The scans were all clear. The little bit of "something" we saw in the one CT Scan was likely due to the way she was lying or the way her lung was compressed. Every other scan shows "nothing remarkable" from head to toe. That is in fact VERY remarkable. When asked what difference allows them to declare her "cancer free" in the scans now when the scans back in July did not show anything and yet they would not say the same thing. The answer was "because now you have been through all of the treatment." We can do nothing but let man's logic slip aside on that.

There is no limiting the joy that we are feeling right now. But I must say that the joy is felt in and amongst every other bit of emotion that one could muster. We have cried, laughed and then cried again for 5 hours now.

We do not want to limit anyone else's joy right now either but we learned long and hard back in July that things can be taken out of context if we are not clear so clear we must be. It was emphasized that Rebekah's odd's of survival/recurrence are no better now that she is cancer free. The next scans (3 months) or any scan thereafter for the next 4 years are more likely than not going to show a recurrence. But we cannot dwell on that and must enjoy her freedom.

The side effects are also something that we are not free from. HOWEVER, the doctor did make it very clear that she was "surprised" at how Rebekah has "skated through this" without many many more complications. She was surprised that we have not seen more of the complications already. They can still come, but they have expected many more of them all ready. Again, God is answering so many of your prayers and protecting this wonderful little girl from these awful side effects.

We still have a lot to go through, such as a full optical exam under anesthetic next Tuesday to look at vision and correct tear duct issues, a dentist specializing in radiology who we are trying to make an appointment with right now, an ENT to take care of the bone and skin surgeries need, other "ongoing" side effects, monthly scans, and.... From here we are going to need your help and prayers as we get through these things. We will still keep you updated and will do a post in the next few days detailing what is up coming so please keep looking for it.

But for right now we have turned a corner. We are enjoying our cancer free time. We are rejoicing. And we are praising God. Our little Rebekah IS A CANCER SURVIVOR!!!!!!!!!!

Update 8:40 PM
Rebekah just before bed tonight. She is wearing both mommy and daddy's bracelets. Bracelets that we promised many months ago would not come off until Rebekah was cancer free. Bracelets that we praise God Rebekah was able to take off of us herself. We will still wear new bracelets in support of all of the kids but it is very special for these two to be off of us. I don't know what we will do with them but I pray ferverently that these special ones never have to come on again. Quite honestly there were many times that I was afraid mine would not come off until I placed it in her coffin.

Just for a sense of perspective. We recommend reading the April 2005 Archives (read from the bottom up) which is where this all began.

Normal?

Warning - random free flow of thought and emotion follows:

I wish I had a camera. Just by looking at her you can tell that Rebekah dressed herself this morning - in reality she picked things out and mommy dressed her - mostly. She wore pink socks, red sweat pants, blue fire department shirt, and a purple and pink "Dora" vest. The latter she put on by herself placing an arm through each arm hole with the vest upside down and then lifting it over her head and amazingly it came out right. She asked daddy to help her zip up the vest and then proudly pointed to the Dora picture and then to herself saying "Doh Doh, Doh Doh" Now you have to add the big brimmed multi-color beach hat and daddy's big slippers. She walked (a loose term) around the room looking like a beautiful little clown.

Sounds normal for a 4 year old huh? As I was looking at her that is what I kept thinking; at least what I wanted to be thinking. It struck me that in addition to the above she was using her right hand to push her IV Pole, complete with food bag and tubing running to a hole in her stomach where she eats, and had her G-Tube feed tubing wrapped up in a loop (to make sure she didn't roll over it) in her left hand. In everywhere we look, everywhere we go, everything we do we are reminded that things are not normal no matter how much we try.

This weekend at the snow outing we saw Josh and his family. Josh looked great and really seemed to be enjoying himself. You could not help but notice how blushed his cheeks were in the cold and, oh ya, the tube running out of his nose and taped across his face that he receives his food through. And his dad who couldn't leave Josh's side by more than 10 feet because he had an electric pump that might need to be used to suction out Josh's trachea at any time.

As we went inside the warming hut there was food, food and more food and everyone kept asking Rebekah what she wanted to eat and she couldn't eat anything. Last week we went to Costco and the "sample ladies" were out in force. One young, well meaning lady offered me a snack and when I took only one proffered "your little boy can have some too." When I politely said "She can't eat anything right now" the same lady insisted that "it would be just fine for her, really it would."

Regardless of what happens in tomorrow's meeting with the results of Rebekah's tests, can we ever return to NORMAL? Can we?

Busy Weekend

It has been a busy weekend. Snowmobiling was great fun. We were up early, dropped Sarah off at Grandma M’s, and headed up to the mountain. The roads were all clear until we got to the entrance to the snow park. The weather was great – the sun was shining and there was plenty of snow on the ground. The Mount Hood Snowmobilers Club did a great job of putting the event together. There were lots of snowmobiles, two buses full of Cancer families, lots of food (hot dogs, chili, cookies, fruit, candies, coffee, hot chocolate, etc…), a warming hut, a game building (with carnival like games), and of course snowmobile rides galore.

Shortly after we got there, Rebekah went down the hill on inner tubes and toboggans. We asked her if she wanted to go for a ride on a snowmobile and she said yes, but when we found someone who was willing to take her, she wanted nothing to do with it – screaming and trying to get away from the snowmobile and holding tight to whoever was closest. We weren’t going to push it and went onto other things. She was being quite the socialite and making new friends – anyone who was willing to talk to her or take her hand.

After the crowd arrived and the rides started in earnest, we asked her again if she wanted to go on a ride and she said yes. We put her on a snowmobile and had the driver take her for a quick ride around the parking lot area (less than a minute) because we weren’t sure if she really wanted a ride. When they came back, Daddy asked her if she wanted more or was she all done. She held onto the snowmobile and shook her head yes when Daddy said more. So they went off again, this time for about 10 minutes. When she came back, she was ready to get off but wasn’t screaming. We asked if she had fun on her ride and she said yes. When we asked if she wanted to go again, she said no. She has been pretty consistent with that. “Did you go for a snowmobile ride?” “Yes.” “Did you have fun?” “Yes.” “Do you want to go again?” “No.” I guess once was enough for her.

After getting home, we had some furniture to move to get ready for the new bed. We had to figure out how to make it all work. Mommy’s dresser has been in Sarah’s room and we wanted to get it into our bedroom. It took some trial and error, to see what would work, but we got it figured out. The bed arrived this morning and we got it all set up and ready to sleep. We bought a heated mattress pad (found it on sale for 25% off plus had a coupon for another 20% and then had a gift card, so it didn’t cost us too much), since we have gotten used to the warmth of the waterbed. Grandma A bought us some sheets, a blanket and an electric blanket, too, so that we will be have some new stuff to go with the new bed. We’re going to see how comfortable we are without the electric blanket. We are looking forward to a nice sleep in the new bed. It has been a week of sleeping on the couch.

Grandpa and Grandma C stopped by this morning for a little while and this afternoon Grandma A stopped by for a while.

Rebekah has continued to have constipation issues. I was a little concerned that we might have gone too far to the opposite way, when she had a soft stool during the night Friday night. Knowing we were going to be gone all day Saturday, I was concerned that she would be having diarrhea issues, but it didn’t come to be. Her stools are still pretty firm, and she only had one today, so she got more Colace tonight. At least tonight with her stool, she wasn’t screaming in pain. So that is improvement.

Rebekah has thrown up a couple of times over the last few days. I think it has mostly been because she got mad and worked herself into a fit. We just have to take it a day at a time. I’m continuing to work on getting her nutrition in during the day using bolus type feeds, but she still needs more at night. We will get there.

While Grandma A was here, I told Grandma that Rebekah was going to need a change. Sarah headed into Rebekah’s room, opened the drawer that has Rebekah’s diapers and got one out and put it up on the changing pad. She had that all done before Grandma and Rebekah could get into Rebekah’s room. She is just too cute! Both girls are such big helpers.

We continue to think about Rebekah's scans and what the results will be. We pray for clear scans and NO MORE treatment, but we can't help but question "what if?" That is our life as the parents of a cancer kid. I don't know if we will ever get to a point where we don't worry at least to some extent.

At the same time, we think of Oliver and his family. They are still waiting on results from tests last week which will determine what possibilities exist for his treatment. They need prayers for Remission and for guidance in the decisions that will need to be made. As I think about Oliver, I can't help but wonder "Is Rebekah next?" or "What is next for Rebekah?". We can't fret about it so much that we don't enjoy today, but it can be difficult.

The End of a Long Week

What a week it has been! We are all pretty tired from it. Today's test went reasonably well. It is always frustrating to need to be at the hospital at 6 am for a test that is scheduled for 8 am, but we have learned to deal with it and when to push to keep things on track.

We are so proud of Rebekah. She's had a rough week and she has been a trooper through it.

Today's anesthesiologist was great! He talked with Daddy for a while last night and met us in the room today, before the procedure started. He had read much of Rebekah's chart and seemed as though he knew her, even though this was the first time he worked with her. He allowed us in the room while she was being put to sleep. He took it very slow, so it took a few minutes before she was asleep. He allowed us to work with him through the process. He commented that he was thankful for our help, that he enjoyed working "with" us and that we were helpful (and not hindering the process like many parents might).

After she started to wake up after the procedure, we all headed up to her room. The anesthesiologist determined that we did not need to go to recovery, but could head directly to the room because she was doing well. He came to the room with us and let the nurse know that we could go as soon as she was ready for us to go home. I think that helped us get out of there earlier than we might have otherwise been able to do. It seems like we've sometimes (at this hospital) had to wait 2 hours after the procedure before we've been allowed to go.

Debbie brought Sarah and met us at the hospital once we were done and we were home by about noon. It sure seemed like it should be much later, but it was really about noon. Both girls went down for naps and so did Mommy and Daddy. Again, big THANK YOU's go out to Debbie and her family for keeping Sarah.

The girls have had fun playing, Sarah has been eating up a storm and both have brought joy to our hearts. While Mommy was making dinner, the girls were playing in their playroom. Both Mommy and Daddy were listening and keeping an eye on them. When I went to get Sarah to put her into her highchair, I walked into the room and found Sarah playing without pants ... or diaper. Ugh! Thankfully her bottom was clean and we didn't seem to have a mess to deal with.

Both girls went to bed a little early tonight. They both seemed to be pretty tired and crabby.

Now we wait for results... Tuesday, we have our appointment, so until then we wait and try to do so patiently. We are hopeful for "good" results, but always know there is the possibility of recurrence. Waiting can be difficult.

I called the Eye Doctor's office today to try and schedule her for clearing the plugged tear duct and to do a more intense eye exam while she is sedated for the tear duct procedure. The person who does the scheduling was training this afternoon. She called back, after hours, to let us know that she had gotten the message and would check with the doctor to see what all needed to be scheduled and will get back to us sometime next week. Now that Rebekah is done with Chemo and has recovered from the last Chemo, we can move forward with the Eye Doctor.

Meanwhile, there is talk about getting her Central Line removed as early as next week. I would like to know when the Eye procedure(s) will be scheduled. I am somewhat afraid that we remove the central line and then find out that she has eye issues that need immediate attention requiring multiple sedations which would mean multiple IVs. I don't really expect it to be the case, but just don't like the "unknown". At the same time, the central line requires daily care and protection and has a risk for infection which could put her back in the hospital, so there are some very good reasons to get rid of it.

Tomorrow, we will get up early again but this time for fun. Mt. Hood Snowmobilers club is sponsoring a day on the mountain for all Candlelighter's families. Candlelighter's is a cancer support group that does a great job of supporting cancer families in many ways. There will be snowmobile rides for everyone and food and fun to be had. We will drop Sarah off at Grandma M's before heading to the mountain. Sarah didn't much care for the snow in November, so we figure she'll have a better time at Grandma's and we'll have a better time without a screaming unhappy child. We asked Rebekah if she wanted to go for a motorcycle ride in the snow (she knows what a motorcycle is, but doesn't know what a snowmobile is) and she said she did, so we signed up for the trip. We are hoping to have a great time!

4am Comes Early

4am comes pretty early when you are getting to bed at 11pm-midnight in order to get things done after being gone all day.  Testing week.  And I know more is getting “Tested” then Rebekah’s scans.

We received two calls last night from the hospital.  This is a “different” hospital than we normally go to and the only one that has this piece of equipment (PET Scanner).  The anesthesiologist was really good, had at least read Rebekah’s history and seemed like he “knew” her even though this will be his first time with her.  The nuclear medicine guy was not so good.  When asked about what times things were actually scheduled for – we are a little leary about having to be somewhere at 6am when the places we need to be seen in generally don’t open until 8am – he pretty much didn’t want to tell me.  When we explained that we would be anywhere anytime but were not fond of  1 ½ early just to fill out a single anesthesia form, he became very condescending and informed us that if we spent any time around hospitals at all we would know that things are “just that way.”  We let that one go…

One thing we have not mentioned earlier this week is that Carl from Gales Creek Church has spent a couple days this week (with help although we have not always been here so we don’t know who for sure) helping to trim some fruit trees that we have.  It is a HUGE chore and we very very much appreciate Carl (and friends)…

As I think we already said, we are going to be meeting the doctors after the tumor board reviews all of our scans next Tuesday.  That is when we should have some results so please keep praying.  Pray also for any sources of funding for a freezer and the new bed – even though we got the new bed VERY inexpensively, the funds we had planned on using for that have “been diverted” and are no longer available.

A Long Day

It has been a busy day. It started at 3 am when Rebekah woke up and wanted a diaper change and then refused to have her pj bottoms put back on, her nutrition shut off, owie medicine and lotion. Once all that was taken care of, she went back to sleep, but Mommy had a difficult time falling back to sleep. Luckily, she didn’t soak through, so I didn’t have to change sheets, too. At 5 am, the alarms were going off, the coffee pot was making noise and it was time to start thinking about getting up.

We were on the road by 7 am and headed into the hospital. Traffic wasn’t too bad and we made it before 8 (which was our target time). Debbie met us and picked Sarah up. Sarah will spend the night with her family and she’ll keep her until we are done with the PET scan tomorrow.

Remarkably, the day went pretty well with most things happening either early or on time.

First on our agenda was the Panorex. We were able to get in quickly for the Panorex (unlike Monday where it wasn’t until late that we were even able to try it and then Rebekah wouldn’t cooperate). Today, Rebekah stood up for it and did a great job of holding very still. The first try was good, so we didn’t have to do it a second time. Yeah!

Then we headed up for the ECHO and EKG. The chemo drugs can cause heart problems, so she needs to be monitored regularly. They were a little ahead of schedule, so we got done quickly here too. She did a great job of holding still and tolerating all the “leads” and gel without complaining much.

Since we had more than an hour before our next appointment (MRI), we headed over to clinic to see if they could do the blood draw early and then when we came back for our appointment we wouldn’t have to wait for the results from the lab. They were able to do that. It meant one more thing was done on our list.

We were still early for the MRI, but thought we would check in there and see if they were by any chance running ahead of schedule. We talked with the nurse there and made sure that everything was on the plate for the ear wax removal and audiology exam and asked her to add a dressing change to the list of things to be done. They were aware of the ear wax removal and audiology exam and they were all on the same page about that. Nurse Gerry was taking care of everything for us, so that was great! We got our paperwork done and then had some time still before the procedure.

We wandered up to the Pediatric ward and said “hi” to several of the nurses. Rebekah gave hugs to Nurse Stephanie, Nurse Kate, Nurse Shari and Nurse Darcey. At different times during the day, we saw Lisa (Occupational Therapist), Amy (Physical Therapist) and Melissa (Child Life Specialist). We visited with Grandma C for a little while, too and ran into Bronwyn.

Gerry called us, to tell us they were about ready for us, so we headed back to MRI. Once Rebekah was sedated, we headed up to get a bite to eat and wait. The MRI would take an hour or so. While we sat there, we saw Brenda (one of Grandma C’s friends who works at the hospital, too), Sue (the nurse who helped us out Monday) and Gage’s Mom and chatted for a bit with each of them.

Gerry called us to let us know they were about done with the MRI, so we headed back down to wait. Once there, she let us know that the Audiologist was there and that he would be removing the wax and doing the audiology exam and that the IV Therapist was there to do the dressing change. We were glad to hear that everyone was actually in place to get it all done.

The IV Therapist stopped by on his way out and said things were looking pretty good. She has one spot under her arm that was looking a little sore and raw, so he moved the dressing over a little this time.

The audiologist stopped on his way out, too. He was able to get the wax out and said that her hearing was ok. That was great news! There seemed to be a little fluid buildup in her middle ear, but that could be related to “cold” symptoms. He didn’t see anything that screamed “radiation issue”, so we were happy to hear that.

Rebekah woke up crabby from her anesthesia, but we still had her clinic appointment to do. So crabby girl and all, we headed to clinic. Her counts were doing just fine. The Chest Xray looked good, the Bone Scan looked good, the Cat Scan showed a little something that could be a problem or could be from laying on her back during the exam. They want to compare it to the Pet Scan that we have done tomorrow. Next Tuesday morning, the Tumor board will meet and go over Rebekah’s scans. Later on Tuesday, we have our follow up appointment with Clinic, so we should have good details then, hopefully.

We stopped at the bank and at Costco on our way home and just put Rebekah to bed. She wanted to go to bed early, and since we need to get up early tomorrow I figured that was ok. Now it’s time to finish working on dinner and get to bed ourselves. It will be an early morning. We have to be on the road somewhere around 5 am. Ugh!

Wednesday Morning

Oliver is heavy on our hearts today. He is having some tests today that will determine the course of his treatment. What they really need is prayers that the tests show he is in Remission. So, please pray for Remission for little Oliver.

I spent some time yesterday trying to see if I could find an ENT on our insurance who could come to Emanuel Thursday while Rebekah is sedated and remove the wax from her left ear. Our Case Manager (with the insurance company) had given me two names of ENTs who work with Pediatrics that are on the plan. I called them both. One is out of the country until the first part of March and the other is not active on the plan until the end of February and is booked anyway. Ugh. Our Oncologist said he would see what he, himself, can do about the wax Thursday during the sedation. So I guess we'll have to wait and see.

We were able to get the Chest Xray done Monday, but Rebekah wouldn't cooperate for the Panorex. We will go in early on Thursday and hope to get the Panorex done first thing, when she will hopefully be more cooperative. If all goes well on Thursday, we will have the Panorex, Echo, EKG, MRI and then a Clinic Appointment. Another long day... Debbie will meet us early in the morning and pick Sarah up and keep her through Friday's test, too. Thanks again to Debbie and her family. At least Thursday night, Debbie's kids will get to see Sarah and get to play. It sounded like they were pretty upset that Debbie was going to have Sarah on Monday and they weren't even going to see her. I can hear the "Mom, can I please please please stay home from school" requests she must have received.

Rebekah is having constipation issues. I gave her a dose of Colace yesterday afternoon. We will keep a watch on that situation. No way of knowing, yet, if it has helped.

She continues to do well with the feeds during the day, but we still are not able to get it all in during the day, and I'm not pushing really hard at it. I'm kind of in a catch 22. Tonight (or tomorrow morning), she can't have any food after 4:30 am because of her sedation at 10:30 am. I don't really want her to be too hungry, so I kind of want her to have some food going into her stomach until close to 4:30. Then Thursday night, food has to be cut off at midnight. It is hard to listen to her ask for food or drink and not be able to give it to her. At the same time, I don't want to push to get all of her requirement in, if that is only going to mean that she throws up. It is always a fine line.

The last two mornings, Rebekah has woken up about 6:00am and not really gone back to sleep. I'm having to go in and check on her (and change her diaper and sheets) and then put her back to bed. Then she keeps wanting more and more things - cold water, owie medicine, lotion (yes we are still doing lotion for the owies on her tummy, legs and cheeks). Mommy is still pretty tired, but it is tough to do anything more than dose when she keeps making noise and requests.

This morning at about 7:00, I was in with Rebekah and could hear her sister moving around. Then it seemed as though the two girls were having a conversation. Sarah would babble and then Rebekah would babble and so on... They had been doing the same thing the night before after I'd put them both to bed. Kind of cute, but not what I wanted at that hour. Sisterly love!

Tuesday AM

We made it home yesterday sometime between 5 and 6pm.  We don’t have any test results yet and probably won’t for more than a week.  It is going to be hard not having them but we are trying to not even think about that right now.  

Rebekah finally got to “eat” something when we got home.  Poor girl had been over 14 hours without food.  She was grumbling but over all was very well behaved after a long long day.  This was one of those days where NOT having to cook was a blessing.  Because we didn’t think ahead enough to have meal taken out of the freezer we stopped and got a Take-N-Bake pizza – a rare treat that we enjoyed a lot. The girls went to bed shortly after getting home and mommy and daddy curled up on the couch and did the same.

Bed update – on the way home from the hospital we stopped by a store managed by one of Scott’s clients.  It was tough with tired girls but we got a good educating on beds and finally picked one out.  Funds were obviously a very big issue but quality is key to Don –the manger.  With our situation in hand Don made sure that we got the best bed for us without regard to the price.  We paid what we could and Don and Sleep Country – a Sealy owned store took care of the rest.  Because of the logistics, how far out we live, etc. we won’t have it until this weekend so we get a week full of romantic nights in front of the fireplace!  PLEASE – if you need a mattress in the Portland area go by Sleep Country at the north end of Beaverton Mall and ask for Don.  Even if you don’t need a mattress stop by and thank him for his wonderful help!

The end of last week and now beginning of this week have been another round of generosity from a lot of people and, yet again, we are SO grateful.  THANK YOU ALL!

At The Hospital - Waiting

Here we begin the waiting game again. This is WAY too similar to our first set of scans when we were first trying to have Rebekah diagnosed. Same scheduling screw ups and everything. Only this time we don't see to be as frantic and upset about every snafu. Maybe because we have been here 10 months of our lives and are "just used to it."

We left home right around 6am and got here just after 7am. We went right to check in and they checked us in (3 minutes) and then told us nobody gets to Nuclear Medicine until 8am to give Rebekah her radio active injection. Ugh. While we were waiting Debbie came and got Sarah for the day.

At about 8:30 we got our injection and headed upstairs for Rebekah's hearing exam. "You are not scheduled today... but rather Wednesday..." UGH! And we were then told the Audiologist doesn't get there until 9:30am. UGH UGH UGH! Luckily she came early and even found a way to fit us in. Only to say she was not happy with the results (moderate to significant loss) and wanted to know if we were ever going to be under a "general". IN TWO HOURS!!!! So she called nuclear medicine and got it set up...here she comes... Well good and bad news. Right ear is fine. Left ear is untestable and we have some issues to work through with an ENT.

After what was supposed to be our audiology exam we were suppsed to go to X-Ray and Panorex before back to Nuclear Med for the bone scan and CT scan at 11.... Ya right. At 11 they still had not come and got us from the waiting room (same waiting room for all) so we just up and left and walked down to the nuclear medicine testing room ourselves. Funny, but they were waiting for us they just never told anybody down in the waiting room that. Little things like knowing NOT to wait but get in their face really help.

Right now we are waiting while she has the bone scan and the ct scan. It should take about an hour or two. They nurse (Sue - who we have had many different times from the very beginning and is WONDERFUL with Rebekah) is going to try and see if she can push through the x-ray or the panorex while Rebekah is still sedated. She said they are in the same area and she may "just not leave" until it is done. Sue is totally AWESOME!

On top of all of this we have to go try and replace our bed which we don't have any money to do. Mommy mentioned that the waterbed had a leak last night. That was kind of an understatement. I bet you didn't know you could use gas tank epoxy to seal a water bed. Well it mostly worked although we were afraid to sleep on it so we spent the night on the couch in front of the wood stove. Had it not been after such a frustration and messy clean up and only 4-5 hours before we had to leave for the hospital it might have been romantic!

We are trying very hard to stay positive at the beginning of what will prove to be a difficult week. (I have now retyped most of this update 3 times...). If we don't we won't be able to make it through. Please pray for us and for Rebekah's tests to all come back clear.

Weekend Update

It has been one of those weekends. It started Friday night, when Mommy had trouble posting an update and in the process "lost" the post, so she had to rewrite it. (It came out much better, but that is little consolation.) Then Saturday morning, we discovered several "problems" with the Blog. We (Daddy) did a lot of troubleshooting and couldn't get a good answer. Finally, he discovered that it wasn't just us and that Blogger (our host) was working on it and today (at least as of mid-day) it seems to be functioning properly. Nonetheless, we started to worry about what would happen if we were not able to get it working again. Please bookmark HelpRebekah as well. If something happens to the blog, we may resort to putting updates on HelpRebekah. Blogger is scheduled to be down Monday from 7pm-8pm PST for scheduled maintenance, so don't worry during that time.

Saturday, we got a chance to get out and celebrate Mommy's brother Chuck's birthday. We went out to a restaurant with Rebekah's Uncle Chuck, Aunt Molly, Cousin Cole and Grandma M. Both girls did a good job of eating and behaving. Afterwards, we headed to Grandma M's. She graciously offered (and we all accepted) to watch all 3 kiddos while Chuck, Molly, Mommy and Daddy went to Costco. Grandma M didn't seem too frazzled when we got back. Thanks so much! It is always great for Mommy to get a little while without girls, which happens very very rarely. It was great to get out for a while and have "normal" activities.

Today has been a frustrating day. Mommy and Daddy are both on edge. As if things weren't bad enough, we just discovered a leak in our waterbed. Not sure what that will mean. We've tried to patch it, but not sure if it will hold. Ugh! We have to be up bright and early tomorrow morning for Rebekah's scans. It's going to be a busy day, so we were both looking forward to a good night's sleep.

Rebekah has been continuing to eat. I am so proud of her. I've been working on using the gravity feed bags (which are much quicker than the pump) during the day and she's been doing well with that. I've kept the volume at 3/4 of a cup or a little more, but I'll work on slowing increasing it as long as she tolerates it. Eventually, we should be able to get all of her nutrition in during the day. I'm excited to see how she's doing with eating and tolerating her food. I see it as a good sign of things to come. It gives me hope for a "quicker" return to eating all of her nutritional requirements, although I have absolutely NO concept of how long it may take. We are, in any case, in it for the long haul.

Tonight, she can have food until 5am so we're not real limited on overnight feeding (and I don't want her to be hungry in the morning (when she can't eat). We have to get up at 5am to get ready to go, anyway, so I'll set my alarm and get her food shut off then.

Rebekah's diaper rash is getting a little better, today anyway. Yesterday, we had a bad diaper change that included bleeding and was followed with screaming and Morphine. Today, it is better, but still has a lot of healing to go yet.

One of our readers, Wendy, brought another family to our attention who recently lost their child. Cameron passed away Friday, so please pray for his family. Of course, please keep Nikolette's family and all the other kiddos in your prayers, too. It is going to be a rough week for us, so please keep up the prayers. We know they make a difference.

It Is Just Not Right...

ORIGINALLY POSTED FRIDAY NIGHT 02/03/06...

Mommy is putting up a post about Rebekah right now; please see that post.

I wanted to share some emotions. Another of our kiddo friends (Warren) who has made remarkable recovery and doing very had this on their blog “Mark took Warren to Nicolette's funeral this morning.” This really touched me. It is not right that our kids should have to go to funerals for their friends. It is not right that we, as parents, should attend these funerals and have to wonder the whole time what we would do for our kid’s funeral. It is not right that a 3 or 4 year old should have more medical knowledge than most adults. It is not right. It is just not right.

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Posted by Rebekah Christine to Rebekah's Page at 2/03/2006 09:18:47 PM

No More Shots...

ORIGINALLY POSTED FRIDAY NIGHT 2/3/06...

It has been a day - one of frustration, aggravations and emotions. The girls have been crabby and getting into everything. Mommy’s been crabby. It has been tiring.

Our clinic appointment was late morning, so we had time to get the day started slowly. The girls didn’t seem to know that we didn’t need to be up early, or at least they didn’t seem to care. We were all up and moving before 8am. When Daddy saw us up, he asked when Rebekah’s appointment was. He seemed to think we were up early.

The good news is that Rebekah’s counts are on their way up, so we are done with the daily shots. Hooray! If we hadn’t gone in today, she would have gotten shots until Monday and then her white count would have skyrocketed and she could experience bone pain and even more crabbiness. I figured the counts were going up, so I pushed for today’s appointment. I’m glad we went.

Yesterday, while we were off to clinic, Daddy put a load of laundry into the wash. This morning, he was working on laundry again. And while we were at clinic today, he washed dishes. Thanks Daddy for helping Mommy out!

We have been working with Children’s Cancer Association and Les Schwab Tires to get a set of tires donated for the van for a while now. We found out today, that while they weren’t able to get a set of “new” tires donated, they were able to donate a set of “gently used” tires. A big THANK YOU goes to Children’s Cancer Association and Les Schwab Tires for getting it done.

While we were at clinic today, we saw Kennedy and her mom. Kennedy wasn’t in a very good mood. Her mom looked good, but sounded frazzled. I can certainly understand that! We checked to see if Gage was still inpatient, but found out that he had gone home yesterday. Sorry we missed them, but glad to hear they had gone home.

Rebekah’s diaper rash is getting better, slowly. She continues to want lotion for the owies on her belly, legs and face. She is getting Prilosec for the acid reflux, Claritin for the sneezes, Zofran for nausea and an occasional dose of morphine. For the most part, she seems to be doing better. This morning, she threw up, but I think it was mostly because she was mad at Mommy. She told Mommy (insisted really) she wanted to go night night, so Mommy put her in bed. At which point, she started to complain. I told her, she needed to go night night and left the room. A few minutes later, Daddy went in to check on her and she had been throwing up. That meant more laundry and one very unhappy little girl. Ugh!

Now, I’ve got to figure out when and how to work on getting Rebekah’s nutrition in during the day (instead of overnight). Next week’s schedule is going to be tough. Since she will need anesthesia Monday, Thursday and Friday, there will be 6 hours each day that she can’t have any food (including her nutrition). How do we get her requirements in? We just have to do the best we can.

It has been one of those days that I just don’t feel like a very good Mommy – causing my daughter to throw up, Daddy feeling the need to help with Laundry and Dishes, getting frustrated with both girls, neither of the girls seeming to feel well, struggling to just “get by”, etc… I know that when I’m tired and crabby, every little thing bothers me, so I need to continue to trudge along and not get depressed.

Please continue to pray for each of the kids battling cancer and the families of those who have lost their kids to cancer.

Blogger Problems and Frustrations

If you do get through and read this please bear with us.  Apparently Blogger is having problems with Rebekahspage.  We are frustrated too!

The Waiting Begins

Wow, you guys are awesome!  Thank you for the comments and support.  As if to over-emphasize the point that you are there and can comment there was some glitch on the email receive side of things and every comment you all made was emailed TWICE to us today.  Ok ok, we get it  (  Janice, no apologies necessary, this blog is about what true feelings are.

Rebekah, Sarah and mommy took off about 8am this morning for the hospital and returned about 1pm or so.  Rebekah’s counts were doing okay but we don’t know for sure whether they are still going down or coming back up.  Therefore the girls are going back to the hospital tomorrow for an unscheduled visit to check counts again and compare them to today.

What mommy did learn about, however, is next week’s scans.  Here comes the waiting and the unknown.  Right now we are scheduled for A LOT of tests.  Bone Scan, CT Scan, Audiology Check, Chest X-Ray and Panorex are ALL scheduled for Monday.  Thursday is MRI, ECHO and EKG.  Friday is a PET scan at a different hospital.  All of these require a full anesthetic and are a bit tough on Rebekah.  Mommy and daddy also have it tough in the waiting.  This is where we find out if the last nine months have made any improvement.  No matter what happens we know that the last nine months have bought us nine months.

I, daddy, am confident in the results that will come back but at the same time am afraid of being too confident.  I am reminded that many of the other children have been acting and seeming their best right up to their final moments.  It is difficult because no matter what we feel, we truly don’t know where things are going.  But that said, PLEASE understand that there is not a single parent out there that really knows for sure what tomorrow will bring for you and your child.  For us the odds are against long term survival and that makes a huge difference in how much we appreciate every waking moment right now.  For most of you the odds are in favor of “long term survival” but that should not change how you view every moment with your kids.  Please love them today like there is no tomorrow – and then do it again tomorrow and the next day.

And if that were not enough, tonight is ER.  It is a show we have come to enjoy but I am not sure we even want to watch it tonight as it is about ALS (Lou Gehrig’s Disease) and is said to be very depressing.   Rebekah’s Grandfather and many of her maternal relatives died of ALS – and her aunt is dying of it right now.  This is difficult on mommy especially.  Rather than re-hash a post from last year I will point you to Tammy (a new blogging friend who also happens to be fighting ALS)’s blog as she put up a post today that included something mommy wrote last summer.  

Please pray for scan results, patience and the ability to make it emotionally through the next couple of weeks.

Off To Clinic

Mommy and the girls are off to Clinic this morning for blood tests and other follow up from last weeks chemo.  Of course we suffered last night for the girls sleeping so much during the day.  Ugh.  

Where did everybody go?  No comments at all for 24 hours made us concerned something was broken!

Oliver

Today has been a “do very little” day.  Everyone has been sleeping.  Daddy is trying to get work done as best as possible.  His cold is going away but still affecting him.  Rebekah and Sarah have both been sleeping a lot and mommy is trying to get in as many cat-naps as she can after only sleeping about 4 hours last night.  We are VERY grateful for the stash of food that has come the last couple of days.  Please see the “How Can I Help” page on www.HelpRebekah.com for info about a need for a freezer again.

Oliver and his family have been on our mind all day.  It just doesn’t seem right; none of this does.  Please extra double your prayers for all of these kiddos and pay special attention to Oliver and his family.  We are especially drawn to wanting to help them right now (like we want to help all of the families) but we don’t know what we can do except call your attention there.