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.

Friday, October 27, 2006

So Many Thoughts

There are many families weighing heavy on my heart these days. In many ways, it is a reminder to me of how precious our children are and our time with our children should be well spent. And it reminds me that at least for today, my problems are petty and small in comparison to the struggles of many others. For that, I am thankful.

Gage's family continues to struggle through this Leukemia (AML) diagnosis. They found out that neither mom nor dad are matches for him. There are several possible matches in the Bone Marrow registry, but they will need to complete further testing to know if any are a match. Meanwhile, they are setting up a Bone Marrow Drive for Gage in Lake Oswego, OR and one in the Boston, MA area. There is more detailed information on Gage's page. At the same time, they are also concerned that the Leukemia is advancing and they will need to start chemo before the Bone Marrow Transplant. Needless to say, Gage and his family need lots of prayers.

Please consider donating Bone Marrow to Gage and becoming a member of the Bone Marrow Donor Program registry. You never know whether you might be the one to save someone's life. Check out Gage's page to find out more about being tested for him specifically and check out about becoming a member of the Bone Marrow Donor Program registry. You never know who might be the next person you know to need a Bone Marrow Transplant. Rebekah has been through the same treatment as Gage and has the same kind of risk of AML (Leukemia) as Gage. The more people on the registry, the more likely that anyone who needs a transplant will find a match. For anyone who is on the registry, thank you for being on the list and now might be a good time to make sure that the information they have on you is correct.

Maggie's family has been on my mind and heart quite a bit lately. One year ago, today, Maggie passed away from her cancer. I'm sure this is an emotional time for them. Check out Maggie's page to see what they are doing to continue the fight against cancer. And, think about commenting in their guestbook. I'm sure they could use some encouragement.

There is a little girl named Kaeli who is two and a half years old and was diagnosed with Leukemia about a month ago. She has two older brothers and her family is going through a lot right now. They went to the ER Wednesday night because Kaeli was in so much pain that she couldn't sit and wouldn't stand. They don't know what is going on. The steroids she is on will cause her pain, but it got suddenly worse. She's scheduled for an MRI today and hopefully they can find an answer. Kaeli is a little older than Sarah and her brothers are about Rebekah's age. I've never met this family, but I feel for them and what they are going through. In many ways, we have been there.

Oliver just celebrated his second birthday as a "normal" two year old. What an exciting time for them!

I choose to be happy today and thankful for the things that I have, despite the "not so pleasant" behaviour of my girls and I choose to not get frustrated over every little thing, although they are testing me. After all, they are toddlers. How do you choose to live today?


Tuesday, October 24, 2006

Seattle Visit Went Well

Thursday, we had our appointment with the Oncologist in Seattle. We were asked to bring Rebekah's scans with us. We knew that it would be difficult for the doctor to have much of a look at the scans if we were bringing them with us, but they were very clear that we were to bring them and not send them in advance. As we expected, doc didn't have a good chance to review them before meeting with us. He wanted to know what our concerns were and we layed them out - 1) do we need to be concerned about the current scans, and 2) what scans should we be doing on a regular basis.

From the little he had seen in the scans and the reports he read, he wasn't concerned about the scans. He did ask to keep the cds so that he could spend some time reviewing the scans and let us know. We left them with him and not more than a half hour later, he called telling us that he wasn't concerned about what he saw. GOOD NEWS!

As for what scans we should be doing, he generally won't do a PET Scan after treatment because of the false positives and they just aren't proven. He recommended that we stop doing them, because they produce anxiety and aren't that helpful. He likes to do a Chest CT instead of a Chest Xray. He feels that the Chest CT will likely catch a lung met earlier than a Chest Xray would and although a recurrence is difficult to treat it is not impossible to treat and it is better to catch it earlier and begin treatment earlier. While Ewing's will usually recur at the original site or in the lungs, it can recur at any location. Therefore, he will often do a full body bone scan as well to watch for recurrence in any location.

All in all, it was a good meeting and we appreciate his time to review things and provide a second opinion. We are glad we went and feel a bit better. We still have to take things a step at a time, but we aren't too concerned right now.

The Dunham family watched both girls for us for the weekend - Thursday through Sunday. Both girls seemed to have a good time. And the Dunham family seemed to enjoy it as well. Mommy and Daddy got away for the weekend, sort of. We were working a race in the woods that ran all day Saturday. We got to "camp" late Thursday night (after driving to Seattle and back) and worked on setup Friday, the event Saturday and headed home Sunday morning. It was nice to not have to worry about the girls and know that they were having fun and being s-p-o-i-l-e-d. We did miss them, however.

Thank you for your continued prayers and concern. It helps us through each day. Please continue to keep Gage and his family in your prayers.


Monday, October 16, 2006

Change in Seattle Plans

We got a phone call this morning (Monday) from Seattle. The oncologist we were supposed to meet with tomorrow won’t be in after all. The nurse practitioner we spoke with doesn’t think that the orthopedic doctor we were scheduled to see is the right person, either. She said an ENT would be a better choice, since Rebekah’s tumor was in her face and an ENT would be responsible for any surgery there. So, instead of going tomorrow (and keeping with all the plans we had made), we will be going Thursday and meeting only with the oncologist. According to the nurse practitioner, he should be able to answer all of our questions, and if not, then he should be able to get scans in front of another doc and get back to us before we might be able to schedule an appointment with multiple doctors. Ugh! One more delay. We’re frustrated and we’re not happy campers.

Thankfully, Debbie is available to watch Sarah for us Thursday. And she and her family were going to watch both girls for the weekend starting Friday morning. Instead, we will leave Sarah with her Thursday morning and Rebekah with her Thursday evening.

Daddy and I are helping with a car race on Mt. Hood all day Saturday, so we'll head up there either Thursday night or Friday morning with the camping trailer. Then we'll meet up with the Dunham family at a pumpkin patch Sunday afternoon and help the girls pick out pumpkins and bring them home.

The girls and Mommy met Aunt TT, cousin Jacob, cousin Michael and Grandma A Saturday and visited one of Grandma A's friend at her farm. The kids got to see goats, chickens, turkeys, ducks, etc... And they got to pick out a pumpkin. They had lots of fun feeding the goats and picking out pumpkins. Sarah was fine with the animals, as long as they were behind a fence. She wasn't too fond of the ones that could come to her. Also, Sarah fell as we walked up to Aunt TT's door and scraped up her nose, forehead and fingers. It didn't start the day off too well. So, now I have two girls with bonks on their faces and heads.

It was really cute watching the 4 kids getting hay to feed the goats. First, they would get a handful and push it through the fence. Then they found a 2 quart pitcher and started filling it up and then climbing up on a bench so they could reach over the top of the fence and pour it out. They talked Kelly (Grandma A's friend, who owns the farm) into finding another pitcher and a couple of buckets so they could all have something to fill and pour. They probably spent a half hour feeding the goats. Kelly told us that the entire bale of hay needed to go into the pen that day, whether the kids did it or she finished it.

Please continue to keep Gage and his family in your prayers. Their family and circumstances weigh heavy on our hearts and in our prayers.


Friday, October 13, 2006

Please Pray for Gage and His Family

Here is what they said last night:
We did not receive good news today. It is confirmed Gage has an aggessive and chemo resistant form of AML (leukemia). Trux and I are struggling to grasp the news. In a month Gage will need a bone marrow transplant. Tomorrow Trux and I get tested with hopes that one of us is a match. There are no words to describe the fear of what lies ahead and what Gage must endure.

Pray for a miracle that the transplant will work.

Pray Gage will be a 2x survivor.

Pray to give our family strength to endure what lies ahead.

Pray for all children fighting cancer.

This has surely been a roller coaster ride for them and my heart goes out to them. Please pray for them as they travel these days and months ahead. Also, please keep the other cancer families (who know Gage) in your prayers, too. In situations like this, it really hits home. Recurrence or secondary cancers become even more of a reality and it is difficult not to get concerned a little more over our own children. We (other cancer families) are devastated as well.

Visit Gage's page and let him and his family know you are thinking of them and praying for them. I know that will be an encouragement to them. They need all the love and support they can get right now.


Thursday, October 12, 2006

Good News for Gage

Gage's biopsy came back with NO LEUKEMIA. They still want to make sure his platelet count comes back up and they will be doing a PET Scan, so there is still the "unknown". Please continue to pray for them as they wait.

We will be going up to Seattle next Tuesday afternoon to consult with the doctors there. Friend Debbie has agreed to watch Sarah for the day and it should be a one day trip. We are looking forward to another look at her scans and gaining some "comfort" with where we are at. At least that is our hope. At the same time, we are a bit fearful of them being more concerned than our doctors here. It is an emotional roller coaster ride.

Sunday morning, we jumped out of bed after hearing Rebekah start to scream. I'm not exactly sure what she did, but she had a cut on the top of her head an one on her forehead. She was very upset, so I was trying to calm her down and stop the bleeding and not get her more frightened. It is all still very sensitive. All a part of having kids!

She continues to love riding the bus. Sarah climbs on, too, and tries to fasten herself in one of the seatbelts. Rebekah will describe it as a "yellow school bus". I figure we're doing pretty good with that. And she knows she needs her backpack and shoes and a hat in order to go to school. What a big girl she is!


Friday, October 06, 2006

Odds and Ends

Please pray for Gage and his family. Gage is a boy a little older than Rebekah with the same type of cancer (Ewing's Sarcoma) who is just a little behind us in treatment. He just had 6 month post treatment scans this week and although the scans look good, his bloodwork is concerning. They suspect that he has Leukemia (AML). According to his page, "There is a 5% chance the Oncologist is wrong." Please pray that the tests come back that it is not Leukemia. Once, again, their life has been turned upside down. Please pray for them.

Monday was Rebekah's first ride on the bus to school. If you saw the pictures, you know she loved it. When she came home, her bus driver was telling us how excited everyone was at school to see Rebekah on the bus. Tuesday, Mommy drove Rebekah to school. She was really sure that she wanted to go on the bus and not at all happy when Mommy told her that we would drive. She has speech therapy after school, so it makes sense for me to drive her and then take her to speech. When I dropped her off at school, the teachers were telling me how excited Rebekah was to ride the bus and how she was telling everyone that she rode the bus. She was happy again to ride the bus on Wednesday. Now, whenever we talk about going to school, she just repeats "bus bus bus".

We had our meeting at school today, to finish where we left off last time. It seemed to go well. The "team" is requesting that Rebekah be evaluated for an augmentative communication device. They've been using a simple device in the classroom and Rebekah has been doing well with it (and even using her verbal words more), so it makes sense to see what might be the "right" thing for her. Hopefully, within a month or so she will have had the evaluation done and we'll know more about our options. Thanks to our friend Pat, who watched the girls play in the classroom while Mommy and Daddy met with the "team".

We have things in the works to go up to Seattle for a second look at Rebekah's scans and treatment - they are working on insurance approval and scheduling. It should happen before the end of the month.

We've been working on Potty training. Neither of the girls is doing a good job of telling Mommy when they need to go. They will, however, tell Mommy they want to sit on the potty when it is time to go to bed or any time they think a delay would be to their benefit. Almost every time the girls sit on the potty, Rebekah will go. Now, I just need her to tell me when it is time. Sarah, will rarely go on the potty. She will constantly get up and wander around the room, but if I tell her she needs a diaper on if she's walking around she gets upset and tells me she needs to go potty. How long do I let them sit? Especially when Rebekah has already done her business and Sarah keeps getting up and wandering. It is a good way to frustrate Mommy. When they object to being done, I have been telling them that they have 1 more minute and then we need to be all done. That doesn't seem to help. Ugh!

Enjoy the weekend!


Monday, October 02, 2006

Very Hard on Daddy

I think that fewer words are best right now; mainly because daddy is not sure how he feels about this "first" for his little girl: