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.

Thursday, August 30, 2007

Getting Ready for School

So many things to do, so little time... How many of you can relate to that? I'm sure you can. There are so many details... What will we do with therapies? What will school look like? What will the overall schedule look like? In many ways we just have to wait and see how it works (or maybe more accurately - if it works). I am thankful, however, that I decided to pay the PTA to purchase Rebekah's school supplies so I didn't have to worry about that one.

Right now, the plan is for Rebekah to go to school for 3 full days (Monday, Wednesday and Thursday) with the rest of the Kindergarten class and to go an additional half day on Tuesday (basically 8:30-11:30). On that Tuesday, she will be able to receive therapies, get some repetition or whatever help she needs. I'm not sure how well she'll do with full days, but we'll have to wait and see. I know it will take some time to adjust, so we will try to be patient. We spent about an hour this evening speaking with the special education teacher and that was an encouraging conversation. Rebekah will have an aide with her - one in the morning and another in the afternoon.

Monday and Wednesday afternoons I will pick her up from school and take her to her speech therapy. I'm not sure how she'll do after a long day, but we will see. If it is too much for her, we will have to rethink it and maybe give it up. One day at a time. Twice a month we will have speech therapy with her device and those appointments are scheduled for Fridays, so she should be able to concentrate for it.

We are getting ready for Candlelighter's Family Camp this weekend. (Candlelighter's is a group that supports families with children with cancer.) We are excited about it. Daddy and I have been on the planning committee for it and we are looking forward to it. It is a great time to get together with other cancer families and have fun. We are planning to head out tomorrow for Camp which starts on Saturday.

Both Grandma A and Grandma M are school teachers, so they started back to work this week. Grandma M is doing it in a wheelchair. Thankfully, she has a coworker who lives farther away than she does and is willing to take her to and from school. Her next check up is the middle of September, so she's in the wheelchair until at least then (and maybe even longer).

Sarah had her screening for school and they think she will probably qualify for special education. She has an evaluation scheduled for next week. Hopefully, we'll know what her schedule might look like after that meeting. I wish I knew what the overall schedule would be like for our family, but I just have to be patient.

Katie is back after being gone for two weeks. Having her back this week has allowed Mommy to help Daddy at least a little this week. He's been running ragged without having much help from Mommy.

I am a bit apprehensive about Rebekah starting Kindergarten, but I guess it is part of her growing up. She is still my little girl. She was all excited when we bought her a lunch bag. Believe it or not, she put the Dora one back and wanted the Hello Kitty one. She still seems fine with her choice, so I guess it will be ok.


Saturday, August 18, 2007

Sand sand...

...and more sand.

We are off at the beach camping with Evergreen Christian Church. We have been attending there for about 10 months but still don't know hardly anyone as it is a bit on the large side. Even the people we have met this weekend all seem to go to different services.

Over all we have had a great time except for one thing - we are at the beach and there is SAND everywhere. As you will see, this is not a problem for the girls but daddy doesn't tend to like sand that well. The girls are having a blast playing anywhere and everywhere and that is good. They have even found a few of the other kids to play with them:

Yesterday we went to the Tillamook Cheese factory (and museum)where you can watch cheese being made, eat homemade ice cream and see lots of neat stuff. Rebekah and Sarah really like the baby cows. I never thought about the "punny" before, but here are the girls saying "cheese:"

When Grandpa and Grandma heard where we were (1/2 mile from their favorite seafood off the pier shop) they couldn't pass up the opportunity to come down and visit AND bring us crab. They brought live crab that we cooked right here in the campsite and then went and cleaned, iced for a while, and then started eating. Here Rebekah is telling Grandpa how to clean it "just right:"

Its really nice to be able to get away and this camp is only about an hour from home so it cost very little in fuel and camping as a group is relatively inexpensive - that is all nice. The weather has held out reasonably well but that is easy for us to say because we are in the trailer and not in tents. It has rained a few times and promises to rain a bit more tomorrow when people are trying to pack up.

Thank you for all of your support and prayers. Tim and Darlene (and clan), we REALLY appreciate your guys' gift, you are messengers from God!


Tuesday, August 14, 2007

The Results are In...

and all is stable. No changes. Nothing remarkable. All good news.

That is not to say that all is well. She continues to have sinusitis, fluid behind the ear, etc... We just have to keep on keeping on... Keeping up with the therapies, doctor visits, and all the protocols.

When treatment started, Rebekah's height ran in the 50th percentile. Now it is in the 10th percentile. She is still gaining height, but not much. Since she is still growing and hasn't dropped off the chart we won't do anything yet, but we will keep an eye on it. We will see how she's doing next scans (in 3 months) and evaluate again. If she falls off the chart or if she isn't gaining any height then we will probably talk with an endocrinologist. One more doctor to potentially add to the list.

Today, Rebekah had a bad nose bleed. I don't know exactly why it happened. She sneezed and then it was bleeding - bright red and didn't want to stop. After several minutes and lots of tissues, pressure and ice we finally got it stopped. She continued to sneeze and have some lingering issues, but it was mostly better. Rebekah's nose often bleeds, but it is usually from some sort of blow to her nose (like falling or running into something) or from picking at it. This seemed different. When doc looked at her today, he said it looked like she had a cut in her nose. Don't know why. We just have to keep an eye on it. It is part of her life. There is just too much damage to her nose and she will have to deal with this sort of thing.

We still don't have an answer to why Rebekah has had major balance issues at times. I haven't heard back from the ENT, although I have left a couple of messages. When I asked doc today about whether they looked for any sort of "brain based" reason for balance problems, he said there wasn't anything obvious and if there was anything, it was very subtle and they didn't see it.

I'm working on getting Rebekah's immunizations up to date. She's supposed to start Kindergarten in September and she needs to be up to date for that. We are doing one shot at a time with a couple of weeks between them. Tomorrow is one more shot. She doesn't much care for them. But it has to be done. We are getting there, but we may not be caught up when school starts. One day at a time...

Sarah had her speech eval with the therapist that works with Rebekah. She definitely needs some help. She's now on the waiting list for Rebekah's therapist. Next week, she has an appointment with the school district to see if they think she qualifies. If they think so, she has a full eval with them scheduled for early September. I expect that she probably will qualify, so then we have to figure out what her schedule might look like.

Rebekah starts Kindergarten in September. Regular Kindergarten is 3 full days roughly 8:30-2:45 - Monday, Wednesday, and Thursday. We are adding another half day on Tuesday (8:30-11:30) to that. After school on Monday and Wednesday, we may continue with Rebekah's speech therapy. We will have to see how it all works out. I don't know how well Rebekah will handle it.

Right now, both girls are at a point where they sometimes will take a nap and sometimes won't. I'm not sure how much I should push the nap or or not. So some days I push and other days I don't. Some days they seem like they really need it and others they don't.

Sarah will be three next month. She looks so much like her sister did at that age. I know it is silly, but I find myself wondering if Sarah will have something go wrong like her sister. Rebekah was 3 years and 4 months old when she was diagnosed with cancer. I just can't help think about it once in a while. I guess I just have to get through the next 6 months or so before I'll quite feel comfortable. Sarah is wearing so many of the clothes that Rebekah wore during the first part of treatment and that just adds to it. I have to constantly remind myself that Sarah is a much different child than Rebekah.

Grandma M made it home from Rehab Friday after breaking her leg three weeks ago. She is glad to be home and she seems to be getting by. I haven't been able to get over and help her out since she's been home. I've been running, running and doing more running. I only have so many hours in a day and I'm already burning the candle at both ends...

Speaking of which, it is time to head for bed.


Monday, August 13, 2007

Its Monday Morning...

...and we are back home from a long 4 days of camping. We got home late yesterday afternoon just in time to go to Rebekah and Sarah's cousins' birthday party and then got home after 9pm last night. Camping took its toll on mommy and daddy and we are worn out but it was a good time overall seeing lots of old friends. It was a church campout from a church that we used to go to.

The girls are off to speech therapy and daddy is back into piled high paperwork in the office.

We'll get some more updates and details of the weekend soon.

PLEASE be in prayer for Lexie and her family (link to the right). They are in a very difficult time right now.


Tuesday, August 07, 2007

Rebekah Is In Scans...

...and mommy and daddy are up in the hospital Atrium waiting; like we have done SO many times before.

A really neat thing happened to us downstairs at the MRI check in. Rebekah got to go EARLY. They were waiting on us and asking us if we wanted to go early. We checked in, did vitals, put some owie cream on Rebekah's hand and gave her some relaxation medicine (Versed). After that started to take effect we put in an IV, gave her an initial dose of sleeping medicine and out she went. We now have 1 hour and a half or so wait while she does scans. Mommy went to the clinic to see if we can schedule our appointment to get results some time next week.

We brought Sarah and Katie with us and, before we checked in, we took and gave Katie a tour of the hospital and all the places to play. Katie is taking care of Sarah while we wait. Child life was putting on a music and arts seminar for the kids so they will probably take advantage of that and then join us for a bite to eat.

Pray for clear scans and minimal apprehension while we wait for scans.

Yesterday we met with the AC/Air Quality guy for putting stuff in at home. The company we are working with is specatcular and is doing a lot of work at low or no markup for us. They are going to not only be putting in air conditioning (a heat pump actually) but also a HEPA filter and now also an Ultra Violet germ killing system. The cost is significantly more than we expected but we will have to work on finding the funds for it. Already one very VERY gracious benefactor (for lack of a better term) has donated $500.00 towards the total.

Prayers for the way God provides the way to make everything work out. We know He will but are just not sure how.


Monday, August 06, 2007

Have You Ever Had One Of Those...

...days? weeks? months? lives?

Around here it has been one of those. Forgive us (me) if we (I) vent a little.

The last couple of weeks have been an exercise in frustration. It's not that we have been busy, although we have. It's more that everything seems to be catching up to us at the same time and then we have emergencies that come on top of it all and that kind of pushes us over the edge.

Rebekah's side effects continue to get worse. She is constantly crying (not really crying but her eye watering) but still asking for eye drops all the time as her eye feels dry. Her nose is in the same situation and the fluid in her ear is still being somewhat problematic. On top of these she also seems to be getting weaker. Despite all of the physical and occupational therapy her strength is just not growing. Yesterday she could barely pull herself/step up into the van. One time she did it by herself and other times she had to have daddy help her. Then we have the nerological/mental issues and again, she does not seem to be progressing and maybe even regressing a bit. Every now and then you get a glimpse of something new learned and you can see that inside that little radiation damaged brain things are trying to work - and in those times you rejoice greatly.

The summer heat has also been contributing to the build up of issues. Sometimes it is too hot to go outside (not to mention that outside means absolute hands on all the time adult care to keep them safe) but at the same time it is too hot inside to do much of anything. We have one air conditioning company coming back today for a final review and to see what we can do. They have been great and have "included" a lot of services but their price is still just out of what our budget can afford. And that is without any sort of additional air cleaner being added on. We so much want to be able to get some better air to help with Rebekah's sinuses but we may just have to settle with cooler air. This is one where we are taking a leap of faith and spending into reserves but we do have faith that God will make things work out.

And then worst of all, far beyond any of our "piddly" problems there are children dying and suffering all around us. It seems absolutely horrible to complain about that affecting us when obviously it affects those children and their families SO much worse. In fact we should be rejoicing, not complaining, at how great _we_ have things. The last several weeks have seen Janessa (Boey) and Lexie (links for these kiddos at the right) both with major hurdles thrown at them. And they have also seen Frederick going home to hospice care and Chelsea going home to be with Abba Father. Please take a look at a short quote from Lexie's mommy that appeared yesterday:

Just got the results of the MRI. Chris is at work and I can't reach him. Guess I felt the need to tell someone. Anyone. Everyone. It's back. Multiple tumors are appearing all over. I don't know whether to cry or scream because I am so angry. I think I will just do both. My poor baby. My God, why? WWWWHHHHHYYYYY?
Well, I guess I will go cry and scream and cry and scream and try to reach Chris. I posted some new pictures while waiting for the results so check them out please.
Thanks for all the love, prayers, and support while we have been fighting. You all have been Heaven sent. Thank you.
Believing although I am pretty much about as broken as a mommy could be,

Update from Robyn this morning:
Hi. This is a quick update for now. We are meeting with our oncologist at 12:00 to decide on our plans of end of life care with Hospice. Neurosurgery was in a little while ago and the tumor is IN her brain stem and everywhere. It's inoperable although removing it again probably wouldn't have happened even if it was accessible. Will let you all know the details as soon as we know something.
Frederick's memorial is Wednesday so we would like to make it there. My family reunion is Saturday in Pennsylvania, and I would love to take her. Hopefully we will be able to do those things as her time left is probably not long. That's it for now, I guess.
Believing in God's grace and comfort to get us through,

No comments necessary.

Our hearts, our prayers, our lives go out to each other. Please join us in lifting them up. As said, it feels absolutely horrible for us to complain about our minor issues but yet, they are real to us...

Hopefully Grandma M. will be able to come home this week. She is still in the rehab center after severely breaking her leg two weeks ago. Mommy has been visiting her almost daily as well as taking care of her errands, doctor's appointments etc. In order for her to come up we have to build a ramp at her home and we are planning on getting that done this week too! As we didn't post them then, let us close this post that I don't even know how to describe with a couple of pics of the girls from the day that Grandma broke her leg. We had gone to visit her at a campground about an hour and a half from here along the Columbia River. Sandy, very sandy and a bit wet too but the girls had a blast:

One of the reasons that all of this (especially Lexie's scans) is affecting us so much is that Rebekah's every 3 month scans are tomorrow. Praising God for 18 cancer free months and praying for many many more.