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.
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Monday, November 27, 2006



100,000 VISITORS - ABSOLUTELY AMAZING!!!!

We just had our 100,000th Visitor. We never could have even imagined Rebekah touching this many people. Thank you all for supporting us throughout these times but most of all, THANK YOU ALL FOR LETTING US SHARE WITH YOU!

Visitor 100,000, was this you? Let us know:
Your Internet Provider:
Domain Name swbell.net ? (Network)
IP Address 69.149.59.135 ? (SBC Internet Services)
ISP SBC Internet Services
Location Continent : North America
Country : United States (Facts)
State : Texas
City : Dallas


You are running:
Operating System Microsoft WinXP
Browser Firefox
Mozilla/5.0 (Windows; U; Windows NT 5.1; en-US; rv:1.8.0.8) Gecko/20061025 Firefox/1.5.0.8
Javascript version 1.5
Monitor Resolution : 1024 x 768
Color Depth : 32 bits


You came to us (PST) at:
Time of Visit Nov 27 2006 7:40:47 am
Last Page View Nov 27 2006 7:40:47 am


After being referred by the search engine:
Referring URL http://www.dogpile.com

Where you searched for:
"Rebekah Berry"

And finally, just because you all like pictures, this is what we woke up to this morning:

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Friday, November 24, 2006



Still Our Beautiful Little Girl!

Today daddy went off to help Grandpa sell Christmas trees. Grandpa has a tree farm south of Hillsboro, Oregon and gives some of his income to Rebekah's trust (100% of the income for anyone who asks that it be given to Rebekah - click here for a map if you are local).

While daddy was away mommy and the girls worked on their hair. Because Sarah has a really bad cold and runny nose mommy put her hair up in pony tails. Mommy and the girls call them "ponies". Well, sure enough, Rebekah wanted ponies too! Here is the result - you can clearly see (double click either of the pictures to get a full size version) on the left side what the radiation has done to her chances of hair growing back:

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Tuesday, November 21, 2006



A "First"


Rebekah "earned" her Dora socks by having a dry/clean pull up ALL DAY on Sunday. Even through church, even through car rides and even through naps. It was the first (and unfortunately only so far) day that either of the girls have managed that and we are SO proud of her! She went to bed in her new socks and in the middle of the night woke up screaming and crying because they had fallen off. Daddy had to tear her bed apart to find them and get them back on before she would go back to sleep.

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Tuesday, November 14, 2006



Scan Results are In - All Clear - WooHoo

Today was our clinic appointment to go over scans. Everything is looking good! We can live and enjoy life for another 3 months. WooHoo! We talked with the oncologist about a variety of topics.

Rebekah has not been able to have any immunizations since she was diagnosed with cancer and her sister was not able to have any immunizations that were "live". That has meant that neither girl is up to date on her immunizations. We needed to find out what both of them could have. Rebekah can start to have more immunizations as long as they are not "live" - we will need to wait until 1 year past treatment for that. Sarah can have any immunizations at this point.

Our treatment protocol calls for a Neuropsychological evaluation at two years post treatment. Rebekah's developmental specialist suggested that we have it next spring (which would be one year post treatment) so that it would be before she went into kindergarten. So we talked with the oncologist about that. Only to find out that the specialist at Emanuel that both the oncologist and the developmental specialist would recommend is leaving her practice and moving back east before the end of the year and is booked solid for that entire time. So we'll need to find someone else. There is a doctor at OHSU that would be a possibility (we've heard him talk a couple of times) and our developmental specialist may have another idea. So we'll need to work on that.

The oncologist also wanted to make sure that we were working with an ENT, as well as an eye doctor. At this point, we're looking at having annual exams with them and other appointments as needs arise.

We also discussed Rebekah's eating and whether she was still using her G-Tube or if we were ready to have it removed. His goal would be to have it removed by a year or 15 months post treatment if possible (February or May 2007). We will see. As much as I would love to be rid of it now, we still need it. I'm actually seeing some weight gain (maybe a pound) in the last month and a half or so. Despite that, she is at the 50th percentile for weight so I guess I shouldn't complain.

All in all, it was a good meeting and we were relieved with the good scans.

We also found out today that Rebekah's cousin Michael's tests came back with no particular concerns. While that is good news, they are still in a "wait and see" mode which we know can be incredibly frustrating.

A while back Mommy bought some Dora socks and Dora underwear for both girls to be used as "rewards" for potty training. For a while, I've been telling the girls that if they keep their pullups dry all day long then they can pick a pair of Dora socks or Dora underwear. Yesterday, one of the girls kept her pullup dry all day long (even through nap time) until the very last change before bed. Oh was she close. Today, the same girl kept hers dry with the exception of bowel movements and the other one kept hers dry until our trip home from the hospital late this afternoon. Did I need to by the boxes of pullups that I purchased at Costco today? If not (and we can hope not), they can always be returned. I'll let you guess which of the girls did what.

We moved speech therapy to before school on Tuesdays (starting today) because Rebekah wasn't cooperating very well when it was after school. She did much better today and did a great job of staying at task with it. So it looks promising.

Gage started his chemo last week. Please pray with his family that the Leukemia go into remission quickly, that a donor will be found quickly, for healing for Gage and peace and comfort for his parents as they make decisions and stay strong for Gage.

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Saturday, November 11, 2006



Grandma Came Over Today...

...and taught them to say "Cheese!"


And in their matching jammies. Rebekah says its a dog, Sarah says its a cow...

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Friday, November 10, 2006



A Quick Waiting Update

Up at 4:45 and off to the hospital to be there by 6:00 AM! Rebekah is now under anesthesia and the MRI has probably started. Once that is done they will bring her upstairs to where we are and do a CT scan all while keeping her asleep.

HOPEFULLY once they are done with the CT scan they will actually come find us.

Pretty uneventful, or at least "normal" for us this morning. We had a new nurse or tech (not sure which ) that we didn't know who kept trying to tell daddy he had to leave the MRI room or couldn't be there while Rebekah was going to sleep. A few polite comments from daddy which she didn't get and then generally ignoring her seemed to work. It never ceases to amaze us how we have "rules" that are just plain old not patient friendly.

Will post an update probably later in the day although we will not know any scan results until at least Tuesday afternoon. If you happen to be reading this 8am-10am Friday morning PST join us in prayer as her scans progress.

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Tuesday, November 07, 2006



A Few Updates and Prayer Needed

Things have been hectic, but generally a good hectic. We thank you all for your continued caring about Rebekah and our lives and for comming back to read what sometimes seems to us to be "not much."

There are some biggees to update you with, however. Rebekah's cousin Michael (3), has a lump in his breast that we are all a bit worried about. It showed up this last weekend and one doctor visit was yesterday with another one with an expert in the works. We don't know even what to think about it and right now the doctors are looking towards an endocrinologist (hormones and body chemicals) and not an oncologist (cancer dude). Prayer not only heals the patient but it also heals anxious family nerves and, given Rebekah's journey, there are lots of anxious nerves around. Please join us in lifting up Michael and his family.

We were able to get to Gage's bone marrow drive on Sunday and the turnout was huge. When we drove up to the grade school there was not a single parking spot (legal or illegal) and the gym was packed with people waiting in line. It took nearly an hour for mommy and daddy to have their blood drawn. What an AWESOME turnout. While, yes WHILE daddy was having his arm poked one of the local news channels was interviewing daddy and they aired that interview at 5, 6 and 11pm that night. It was such an HONOR to be the ones being able to do something, however little, to help someone else for a change.

Would you all please consider going to your local red cross (see previous post a couple below this one for details) and signing up for the national bone marrow donation list. SO many kiddos, and adults) are receiving life saving treatment because of people on the national list. It is very possible Rebekah could need a donation in the future too and we would love it so much if someone that was supporting her and the blog happened to be someone who could be a donor for her. Getting on the list is easier than giving blood once you figure out the right person to talk to and the right place to go.

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Friday, November 03, 2006



Gage's Bone Marrow Drive is Sunday

Please keep Gage and his family in your thoughts and prayers. Anyone in the Portland area who is willing to be a donor for Gage, remember his bone marrow drive is this Sunday, November 5th, from 11:00 am until 6:00 pm. The location is Hallinan Elementary School, 16800 S.W. Hawthorne Drive, Lake Oswego, OR 97034.

If you specifically want to donate just to Gage, call the Red Cross DNA/HLA Testing Office at 503-528-5406. You need to make an appointment and the cost is $85.

If you are from out of town and want to donate specifically for Gage, call the Red Cross (503-528-5406), they will send a testing packet ($35) and the testing is $85.

Mommy and the girls went in to the hospital today to get Rebekah's Panorex done. We met Debbie there so she could help watch Sarah. Rebekah did a decent job of holding still, although not perfect. It is difficult for her to hold real still and be patient. The first time, she just wasn't positioned quite straight and the second time she moved. But she was trying to help and not just fighting it. The girls brought Debbie a paper full of stickers that they've earned for their potty training efforts. I think that helped put a smile on Debbie's face.

After we finished, we headed to the cafe to get a berry smoothie (reward) and saw Gage's, mom. We stopped and talked with her for a little bit. Gage, was at school and she was taking care of some things. She seems to be hanging in. It was good to see her and give her a hug. Please continue to pray for strength and encouragement for them and healing for Gage. It is difficult, even more than I can imagine.

We saw a number of nurses that we haven't seen in a while and some of them wanted to know if Rebekah was with me - they didn't recognize her with all her hair. They enjoyed seeing her with hair and active. So do we!

Next Friday, we'll go in for the MRI and Chest CT and the following Tuesday we'll see the doctor for results.

We have been continuing to give Rebekah some pediasure at night time. Her weight seems to be stabilizing a bit (smaller variations) and I'm actually starting to see "some" weight measurements at 38.5 - the highest I've seen. Meanwhile, I just keep pushing forward.

Potty Training continues... Patience Mommy, Patience Mommy...

Have a great weekend!

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Wednesday, November 01, 2006



Brrr

It is mighty cold. Overnight, the temperature dropped to 22. Right now, we are at 27. It is down right cold. We are going to have to be bundled up to go ride the horse this morning. I bet the horse won't want to get up and moving very fast this morning, either.

All in all, the girls are doing pretty well. Rebekah has been taking afternoon naps. She's pretty tired after school. She'll often fall asleep on the ride home and then after lunch she will want a nap. Sarah, on the other hand, is very clear that she wants to "play" after lunch. Then again, Sarah, always wants to play if the alternative is sleep.

I've been pushing a bit harder with potty training. Both girls are able to "go" on the potty, so now they don't get a sticker unless they have a dry pullup and go pee or poopy on the potty. Boy did that tick Sarah off when she didn't get a sticker because her pullup was wet. I'm not sure if Rebekah really cares about the stickers or potty training for that matter. She seems to be content to wear a diaper and have Mommy change her all the time. Sarah gets really upset when I try to put a diaper on her. Both girls prefer to use the "dora" potty seat and not the little potty. So, we have to take turns and not sit for a long period of time (better for mommy's patience anyway). Once in a while, they'll use the little potty when they need to.

Can you believe that it is already November? Rebekah's 9 month scans are due in November. I called last week and got us scheduled for an MRI and a Chest CT. I had asked for next week with at least one of the scans scheduled for Friday, since Rebekah doesn't have school on Fridays. They called back and had us scheduled for both the MRI and the chest CT on Friday with one anesthesia. The bad part is that we have to check in at 6:15 in the morning. But one anesthesia and getting both done the same day and not having to miss school is great, so 6:15 next Friday (the 10th) it is. Sometime between now and then, I'll need to get Rebekah in for the Panorex and possibly a Chest Xray. Maybe this Friday. We'll see.