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.
____________________________________

Wednesday, December 27, 2006



Another "First"

Today Rebekah has been without Pullups or Diapers since she woke up this morning. For the last four days, she kept her pullup and underwear (which she wore under her pullup) dry - even with all the Christmas travels, so today Mommy let her wear just underwear. So far, she has done great! And it hasn't been an easy day. She truly is growing up and we are thankful for that.

In many ways it has been a great Christmas. We got to spend it together as a family and see and spend time with all the Grandparents. And we didn't have to have bags packed for the hospital - just in case. Rebekah ate everywhere we went. What a difference a year makes - last year she didn't eat much of anything, if anything at all. She has actually had about a week without needing "tummy drinks" at night. And we've been blessed by many friends and family members in so many ways.

In other ways, it has been a difficult few days. Saturday (the 23rd) we headed to Grandma A's to celebrate with her. On the way, Rebekah complained about her left eye hurting. When we got to Grandma's house, we put some drops in her eye and several times during the evening we put more drops in. She seldom complains about her eye hurting, but we put drops in it nightly because of the tear duct constriction and issues with dry eye. At bedtime, we took a closer look and she had some mucus in her eye, so we cleared that out (with more drops and tissue wipes and lots of screaming and a very unhappy little girl).

By morning, her eye was crusty but a couple of drops seemed to clear it up. So throughout the day, we continued the drops and tried to keep the mucus cleared up. She wasn't real fond of it, but tolerated it. Again, at nighttime, we did a good cleaning and put drops in for the night.

By Christmas morning, her eye was totally crusted over and she couldn't open it. It took several minutes of drops and rubbing and working it to get it cleared up and it was definitely red and hurting. Poor girl. After opening presents at home, we headed to Grandma M's and stopped at one of the local grocery stores (which was open and has carried the brand of drops that I like) so that we could buy more since we were going through it quickly. As I (mommy) am looking at the shelf for the drops, I discover that the drops (a liquid gel) I've been using have been recalled because of possible mold. Ugh! So I bought some regular drops, and a different brand of gel for at nighttime. We stopped using the recalled drops and moved forward with the others.

Christmas night, we put the new gel in her eye when she went to bed and again when mommy went to bed (surprised that she didn't wake up with that). Then I checked on her at 3:30 to make sure she was doing ok and didn't need more - we didn't want a repeat of Christmas morning. She was doing fine, so I let her be.

Tuesday morning (the day after Christmas), we called the eye surgeon's office to let them know what was happening and see if she should be seen. In addition to the eye issues, she had a bit of a cough, a low grade fever and green crud expelling from her nose. All that combined, the eye doc wasn't too concerned about the eye. We need to keep puting drops in it at least 4 times a day and gel at night. She seemed to be doing better with the closer attention - more drops and the gel.

This morning (Wednesday morning), when she woke up she was running 102.6 fever so we called the pediatrician to get her in. We took her in this morning and had to have the nurse help get the wax out of both ears, so doc could get a good look. The left ear was definitely sore and on its way to infected. He put her on Augmentin (an antibiotic) to help with her ears, eyes, nose, and g-tube site (which is also starting to look more irritated than usual). We'll start the Augmentin this evening and hopefully she'll be doing better in 2 or 3 days.

If Rebekah has done so well with using the big girl potty despite all that has been going wrong with her these last few days, she's a pretty tough little girl. She did a great job while we were out and about today, too. Mommy was a little worried about taking her out without the pullup safety net, but she did a great job. At one point while we were driving she told me she needed to go potty. I thought, oh no. I asked her if we needed to go into the grocery store and use the potty or if we could stop at the bank and then go to Grandma's and use her potty. She told me she wanted to go to Grandma's. So that is what we did. What a big girl!

Mommy has gotten a nasty cold or flu or something - bad headache, nausea, sore throat, etc... It wiped her out Christmas Eve all day and Christmas Day and it is still causing problems. Mommy wasn't much company at Grandpa and Grandma C's Christmas Eve - she layed down and skipped dinner and most of the presents. Daddy had to take care of the girls, with some help from Grandma C and Aunt TT. Yesterday, daddy seemed to have caught it. Ugh!

Today, we called Grandma M and Grandma A to see if they could watch Sarah (who hasn't seemed to catch this yet) to keep her (and her energy) away from the rest of us. They are doing a bit of tag teaming, but will keep her tonight and most of the day tomorrow. Hopefully, that will give us a chance to catch up a little.

Stay tuned for the BIG ANNOUNCEMENT after the first of the year. (And for those of you who are wondering, it is NOT that mommy is pregnant.)

____________________________________

Sunday, December 24, 2006



Merry Christmas...


...from Rebekah, Sarah, mommy and daddy too.

We are greatful for all that all of you have done for us over the last 18 months plus. Please continue to pray for us and all of the little ones (only some of which are listed to the right) who are still fighting this horrible thing we call cancer.

And...stay tuned for a MAJOR announcement just after the new year. Keep checking back!

____________________________________

Saturday, December 16, 2006



Never Ending Generosity - Kory's Strikes Again

Left to Right: Kelly (Kory's Father), Rebekah and Dave

Here we sit, again floored by the generosity of Kory's Foundation. Dave (our Kory's "rep") called last week and said they had "A Gift" for us. We were set to meet him in town today. He then called again this afternoon concerned that we would not have enough room in our vehicle...so they came all the way out to our home.

Kelly (Kory's father) and Dave showed up with bins and bins, bags and bags and even more. It is SO amazing that there are people like Kory's who know how important the little things are. And it is not even fair to say the "little" things as everything they brought us is stuff we use day in and day out and it means so much. Well, okay, not everything as they brought a couple of really big gift items that are going to get wrapped up for Christmas gifts. Yes, there really REALLY is a Santa.

Please, if you want to know more about Kory's Foundation check out www.KorysFoundation.org. And PLEASE, if you are in any way in charge of or controlling with your donation dollars (whether that be personal or for your business), please consider a tax-deductible gift to Kory's; they are a true down to earth organization where every dollar truly helps touch individuals in a very direct way!

____________________________________

Saturday, December 09, 2006



TREES!

We are all out at Grandpa's trying to sell Christmas Trees. Anyone who comes to buy a tree from Grandpa and mentions Rebekah gets their money put into Rebekah's trust. Come out between now and Christmas! Directions Here.

Kelli, Jake, Kenna and Caleb (I think I got the names right - her blog here) came from over an hour and a half away and got a nice Grand Fir. Rebekah, Sarah and mommy joined them for a group picture:

THANK YOU!

____________________________________

Thursday, December 07, 2006



A Little Lighter...

The next post is a little heavy so here are some beautiful pics to lighten things up. Earlier this week mommy was teaching the girls how to swaddle their baby dolls and guess what, the girls wanted swaddled too!


____________________________________

HAPPY BIRTHDAY REBEKAH, Christmas Trees and Kory's Foundation Deserves your Holiday Donations

It is amazing and truly a miracle; Rebekah has made it to five years old tomorrow. And for all of you parents who have ever said to (or about) your children "It's a miracle you have survived all these years...", it really is true in Rebekah's case. She is our miracle baby who has, so far, fought against all the odds and is continuing to bless us every day!

Just a little reality check here as the Christmas season stresses fall upon us. A year ago we were sitting in the hospital after 8 plus months of chemotherapy, radiation, tears and the unknown and we still had another month plus of chemotherapy to go before we could even run tests to know if it was doing any good. We honestly did not know whether our little girl was going to be a live another few weeks, months, a year or ??? In some ways we still don't have any assurances, but we have a lot of hope as this little girl has been cancer free now for 10 months or so and THAT is a miracle.

Think about how wonderful your family really is and how delightful it is to have someone around healthy enough to be frustrated with as your tempers get short and you get stressed. Most of all, drop the stress, drop the tempers and take your kids, your spouse and all those around you up in your arms and realize that THEY are the most special gift that you could ever be given this Christmas.

Another thing that has changed so much for us is the answer to "What do you want for Christmas?" or "What should we get Rebekah for her birthday?" It really is a hard question for most of us to answer and that is especially true in our case. We have everything that we really need. We have everything that really matters! As we have had some difficult times with a loss of a job for mommy, daddy having less work time as we went through hospital stay after hospital stay and then medical bills... Now that we have had an opportunity to get somewhat back to "normal" we realize how we ALREADY have way more than we need. THANK YOU for all of you who have supported us through these tough times in so many ways but for now the bills are paid (or at least current until next years medical deductibles hit...), there is food on the table, and we are all together - what more could anyone ask for?

I am glad you asked what more we could ask for! How about sharing some time with us and getting a Christmas tree at the same time? This Saturday, the 9th, we will all be at Grandpa's tree farm south of Hillsboro selling trees from around 9am until mid-afternoon and Rebekah wants to see LOTS of people. Grandpa has said that he will put all the proceeds of the trees from people who come to see Rebekah in her trust (more info on Rebekah's trust here). Grandpa's is about 10-15 minutes from Hillsboro, Beaverton or Tigard/Scholls. Click This Link to find directions on how to get to Grandpa's Tree farm - Adams' Christmas Trees.

And finally, we owe the biggest, largest, most wonderful gratitude to Kory's Foundation, a group that understands more than anyone what we were going through (they lost a child to Ewing's Sarcoma) and the one's that helped us pay bills, make it to the hospital, etc. They allowed us to get through it all and they have been on our minds a lot lately. We have wanted to put up a mention here asking you consider making any of your year financial tax-deductible donations to them for all they have done for us. And then guess what, we got an email from then tonight asking if they could BRING US another Christmas gift... it is us that need to be thanking them and should be giving back to them and yet here they are, still giving.

____________________________________

Sunday, December 03, 2006



Lots going on...

It has been a couple of hectic weeks. It was nice to be able to celebrate Thanksgiving with family and not worried about another hospital stay. We celebrated with Mommy's family at our house for brunch, then with Grandma A at her house for dinner and later with Grandpa and Grandma C and some out of town family on Saturday. We have a lot to be thankful for.

The last two weeks have been full of colds around our house. Sarah started just before Thanksgiving with a fever and nasty cough. She seems to be feeling better, but the rest of us are all pretty bad. It has been a week or more of not doing much and just trying to feel better.

Tuesday, I took both girls to the doctor - Rebekah to look for ear infections and Sarah because of her cough and cold symptoms. Rebekah didn't have an ear infection, although her left ear did seem to be affected by the cold. Doc seemed more concerned about the green discharge from her nose. It is a little worse than we often see, but because of the radiation damage she will often have sinus infections. We got a prescription that we can fill if we think it will help. We decided to get it filled today and started it tonight. Sarah probably had some croup, but seemed to be doing ok and didn't need any prescriptions.

We received a call before Thanksgiving from Scottish Rite Speech Clinics. They had an opening for Rebekah and wanted to know if we were interested. They want to see her twice a week for 45 minute sessions. It seemed to make a lot of sense from a variety of standpoints and so we are now working with them. We started the week of Thanksgiving and meet before school on Mondays and Wednesdays. It means driving downtown those days, but I hope it will be worth it. At the same time, we are sad to move away from Kathy - she did a great job of working with Rebekah and trying to find the "right" ways to help her

Potty training is going well. Rebekah has earned her Dora socks and underwear a couple of days and many other days she has been very close. Sarah has done a great job except when it comes to BMs. Sarah is often dry when she wakes up in the morning - WOW! Now I'm dreaming of the day when there will be no more pullups or diapers. I've learned not to ask the girls if their diapers are wet. I get a stern "NO PULLUP" from them. They are very clear that they are not wearing diapers. What funny girls! If you ask Sarah if she is a "little girl" she will very clearly tell you "no me big". It has to be because of the potty training and using the big girl pullups and using the big girl potty, etc...

Speaking of being a "big girl", Sarah just graduated to a true big girl bed. She had been sleeping on a mattress and box spring on the floor (so that she didn't have far to fall) and now she has a frame and everything. Thanks to one of our neighbors who was replacing one of their kid's beds.

We've been continuing to give Rebekah "tummy drinks" at bedtime and we are finally seeing a little weight gain. Hooray! I told Rebekah the other night that I wanted her to eat enough so that we didn't need to use her "tummy tube" and we could get rid of it. She was adamant that she did not want it to go away. I guess we'll have to work on that one, but for now she still needs it.