A Couple of Pics to Close Out The Week / Start The Weekend

The girls both got a Dora comforter for Sarah's Birthday from Grandma Carolyn (you know, there are somethings you can't just get one of!) They came today via UPS and the girls opened them right away and loved them. Rebekah loved hers so much she WANTED to take a nap and crawled completely under it and fell asleep. She never sleeps like this:


Yesterday the girls (and mommy) got to come to work with daddy and go to court. A client who is also a really good friend was having their adoption ceremony and we were all invited. Here the girls are looking pretty:

And here they are showing who is really boss of the courtroom! They get to sit in a chair that even daddy or Uncle Chuck (a prosecutor) could only dream of sitting in:

School Test Results and Update

Friday, we had a meeting at school to take a look at the results of the testing we completed over the past few weeks. Basically, her skills are solid at about that of a two year old with a swiss cheese effect (some substance, but a lot of holes) up to 5, 6 and even 7 years. Just watching Rebekah and her sister and their developmental levels, we could see that they are about even.

We have a few more things to discuss with school, so we'll have another meeting in a few weeks, but we made a lot of progress and we have a much better understanding of where Rebekah is at. At least for now, Rebekah will be going to school 4 days a week for an hour and a half each day.

We decided to start sending her on the bus at least some of the days, so we have that in process. Rebekah is much older now than when she started in school and "ready" for the bus. We took Rebekah to the bus garage (last Friday) and sat in one of the busses and their carseats. She just loved it. Today, when we talked about going "bye bye" to school she kept saying "bus". Do you think she wants to ride the bus?

One of the things that they have been working on with Rebekah at school, is being able to say her name so that she can be understood. She is having difficulty with that, so we will probably switch to using Bekah instead. For safety reasons, it is important that she be able to say her name where she lives and her parents names. We can only work on that one step at a time, but hopefully saying Bekah will be easier for her and we can start moving in the right direction.

For those of you who are interested, here are some of the details of the different tests and where she is developmentally: Cognitive: Attention and Memory - 17 months (some skills at 60 months), Cognitive: Reasoning and Academics - 36 months (some skills at 60 months), Cognitive: Perception and Concepts - 23 months (some skills at 60 months), Adaptive/Self-Help: Self-care - 24 months (some skills at 48 months), Adaptive/Self-Help: Personal Responsibility - 36 months (some skills at 48 months), Personal-Social: Adult Interactions - no delay, Personal-Social: Peer Interactions - 24 months (some skills at 48 months), Personal-Social: Self Concept and Social Role - 24 months (some skills at 30 months), Gross Motor - 24 months (some skills at 30 months), Fine Motor: Fine Motor skills - 36 months (some skills at 48 months), Fine Motor: Perceptual Motor skills - 36 months (some skills at 48 months), Communication: Receptive Language - 24 months on one test (with some skills up to 84 months) and 54 months on another test, Communication: Expressive Language - 24 months (some skills at 36 months), and Articulation/Phonology - significant delay.

I've been giving Rebekah some tummy drinks at bed time, to add a little more nutrition to her day. Saturday night, it didn't settle too well for her and she threw up. She needed disconnected, cleaned up, bed changed and then back to sleep. I still haven't seen much of a change in weight, but I'm waiting and continuing to push forward.

Sunday night, after putting the girls to bed Sarah threw up twice. It was a major mess, with a screaming and very unhappy little girl. That was on top of a nasty diaper rash from lots of poopy diapers (Daddy says I shouldn't have fed her so much fresh fruit). She was not a very happy camper. Eventually, she did go back to sleep. Monday she was just fine, so I'm not sure what the cause of the vomiting was. The diaper rash is better, too.

Nap time has been a challenge. Many times, it has taken an hour or more to get one of them to sleep and sometimes the other just won't go. During that hour, the girls are emptying dresser drawers and otherwise getting into trouble, making it very frustrating for Mommy. Then, bedtime is the same struggle. I've decided that maybe naps are not necessary. Late last week, we gave up naps and bedtime went much better. The last couple of days, however, the girls have needed late afternoon naps, so I've put them down and they've done a good job of going to sleep. We'll have to see how it continues to play out, but scheduling an early afternoon nap probably won't be happening any more.

Tumor board met this morning and should have discussed Rebekah's scans and when to rescan. Hopefully, we will hear the results of tumor board later today. We are still planning to go to Seattle to have them look at her scans, too, but have been waiting to hear what our Tumor board says first. One step at a time.

Rebekah and Sarah's dental appointment went pretty well. No particular concerns right now. They asked if Sarah is using a binky or sucking her thumb (they were seeing signs of use) and I told them that we had just gotten rid of Sarah's binky. They told me that usually within about 6 months of stopping the habit, the "damage" will disappear and she'll be back to where she should be. I'm trying to be consistent in brushing and flossing their teeth every night. It is tough and the girls are not fans of either. If they don't cooperate with the "easy way", then we have to go to the "hard way". It has to be done.

Before their appointment, I talked with them about the dentist and asked Rebekah if she would show Sarah how to be a big girl for the dentist. She said she would. Once in the exam room, Rebekah didn't want anything to do with the chair, so we used a knee to knee approach (Rebekah sat in mom's lap facing mom, the hygienist sat with her knees at mom's knees and a pillow in her lap, then we layed Rebekah back onto the pillow while mom held Rebekah's hands). It worked and although Rebekah wasn't completely happy about it, she did cooperate for the most part. When it was Sarah's turn, she wanted to do it "just like Rebekah".

Ok, an update...

Thanks Queen for asking for an update. I will wait for mommy to do a good one but the bottom line is that we don't know anything more than we have for the last 5 weeks or so. A lot of "well there is something there but we don't know what to think about it..." We still feel like we are on the edge of a cliff. I guess we better get used to it.

We got to go help grandma and grandpa move in some outdoor furniture this morning, then a walk around Costco this afternoon and then after that we finally got around to getting all of Sarah's birthday party stuff (the big tent) taken down outside. It had been wet all week and we didn't want to try and put it away wet. Getting things packed up and moved to the barn meant getting the tractor out, something the girls usually love:

Do you ever feel like life is on hold?

In many ways, that is where we are. That is, if we ever stopped running ragged. Rebekah's Pet/CT is tomorrow (Tuesday) morning. We should have results in a day or two. Friday, we meet with Rebekah's teacher (as well as others) and discuss the results of Rebekah's testing and see if we want to make any changes to her class schedule. It is hard to plan without knowing whether school schedules will change or what the Pet/CT scan is going to show. A tough place to be.

As if we didn't have enough activities going on last week (and this week for that matter), we had a party for Sarah's 2nd birthday on Sunday (yesterday), so we had cleaning and shopping and baking, etc... to do. The party seemed to go pretty well. The Dunham family (Sarah's second family) was able to come and enjoy the time with us, as well as all the Grandparents, Aunts, Uncles, Cousins and our friend Dinah. It was great to see everyone.

The party was all Dora - plates, napkins, cups, cake not to mention many of the presents. Yes, we have two big Dora fans. Any time we talked about birthday, both girls would say "Dora". They were with me when we bought the paper products and cake pan and they sure didn't forget about it.

In case there are any novice cake decorators out there, it isn't easy decorating a cake. It took me waaaaaaaay longer than I expected. Daddy kept asking me if it was going to be done in time and I started it early morning (just after breakfast) and the party was at 4 in the afternoon. I did have a little time to spare to change clothes, and tidy up a few things. If it weren't for all of Daddy's help (and the girls behaving fairly well), we never would have been ready. If I'm going to do one for Rebekah's birthday, too, I better figure out how to make it go faster.

As I was cutting the cake, I started at the feet and gave the first piece to Sarah - the birthday girl. When I tried to give the second piece to Rebekah, she wanted nothing to do with it. She wanted "hair". I told her that if she wanted hair, she would have to wait a while. She waited and watched as I cut and when I got close to the hair, she told me again that she wanted hair, so she got a piece of hair. I guess for a girl that had no hair for so long, hair is important!

Rebekah's eating continues about the same. I have gone back to using gravity feed bags and a pole to give her some pediasure at nighttime in order to try and add some weight. I don't know if it is working yet, but, I'm hopeful. It is a struggle to figure out how to get her some pediasure without affecting what she is eating - if I give it before a meal then she won't eat as much, but if I give it after a meal then she might throw up. She won't drink it and I can't get her to drink more than three juice boxes in a day, except on a rare occasion. Ugh!

Rebekah seems to be talking more and more and doing a lot more of it spontaneously. She (and her sister for that matter) will answer Dora's questions while they watch Dora on TV. As we are driving, she points out all the buses, especially the yellow ones. And she brings lots of things to Mommy's attention - book, Dora, yellow, bus, Grandma, phone, diaper, etc...

Both girls are fighting taking a nap, so I don't know how much longer the naps will continue. In many ways, I think Sarah needs them less than Rebekah. It just doesn't seem right to have Rebekah take naps and not Sarah. Oh the joys of parenting!

Rebekah and Sarah have both been asking to sit on the potty periodically. Usually, Rebekah sits on the regular potty with a Dora insert in it and a stool in front of it for her feet and Sarah sits on the little potty chair. One day, Sarah wanted the stool. So she sat on her potty, with her feet above her bottom on the stool. It was hilarious. She just wanted to be like her big sister! Another day, Rebekah wanted to sit on Sarah's potty and Sarah wanted to sit on Rebekah's. What fun!

And to add to the busy days, Daddy has been really busy with work, Mommy's computer decided to die (and we had to try to salvage the necessary data, which I think we've done), Mommy needs some Physical Therapy for a sore back/neck and finally got a chance to get in today for an evaluation and they want to see her twice a week (how are we supposed to make that happen?), and Thursday of this week Rebekah and Sarah have a dental appointment.

Please pray for clear scans and a good direction for Rebekah's schooling. Thanks, again, for checking on us and praying for us.

Where is Time Going?

We have been running absolutely ragged this week. Classes, tests, shopping, etc. etc. and it seems like mommy has no time to stop. The calmest I have seen her this week is right now sitting at the kitchen table playing playdoh with the girls. And if you have kids you know how much a misuse the word "calm" is when it comes to kiddos and playdoh!

This weekend we have Sarah's second birthday party. It is hard to believe that Sarah is going to be two! Just in case you were not sure if these two are sisters, take a look at this (yes, this is mommy and REBEKAH at 18 months):

and compare it to the picture of couple of posts ago of the two girls - you can click on either picture to get a bit bigger shot. Until looking through some pictures I never realized HOW much they looked the same at about the same age. Even mommy looks the same then as now - she never gets any older!

Our next PET/CT scan is, as I just said, a combined scan and going to be next Tuesday. It is at a new hospital that we have not been to before and that should be interesting. The nice thing is that it is within the Legacy system so we don't have to go outside our system to get it. They have only recently started doing these at this hospital and that is why we have always had to go "outside" to get our PET scans before now. We will be looking to compare with the August PET and see if any of the "hot spots" are areas of concern. Please pray for a miraculous nothing!!!!

The TOP 5!

We cannot believe it. We were surprised a few months ago when searching for nothing more than "Rebekah" on google found her blog in the top twenty. Now she is NUMBER 4! Wow, you can't buy that kind of rating. It surprises us every day how much Rebekah's story gets shared with the world. Thank you God and thank you all!

Oh Goody Pictures

If you have been following Rebekah's issues regarding the last set of scans please make sure you read the previous post as well. Sometimes us putting two posts up so close together means people miss something...

Daddy found a high speed connection at the weekend-long seminar he is in so you get some pictures taken from this last weekend at Camp Harlow. Forgive the quality as our digital camera has broken and we were limited to the cell phone cam.

Rebekah, Sarah and mommy in the background at the putt putt golf range:

Rebekah asking for "help clean please". The picture doesn't show the tears of frustration (she can't handle being dirty) that were there just seconds before daddy asked her to smile and out came the cheesy grin:

No Sarah - that is NOT a slide...but for you...:

Mommy and Sarah driving away on the go-karts:

Conference Results

Our conference this afternoon ended up being Daddy, Mommy and Dr. O. (the oncologist). In many ways, we are still trying to process it. We didn't get all our questions answered, but had some good conversation. I'm getting tired, so forgive me if I ramble or don't make sense.

Apparently, our request for a Radiologist couldn't happen. Radiologists just don't attend meetings like that and there is no incentive for them to do so. Ugh! It would have been nice if we had been told that when we made the request.

Dr. O's gut feeling says that there isn't anything to worry about. We'll do another pet scan fairly quickly (probably week after next) and see what it shows. Some of the areas of "hot spots" are areas that commonly have activity, so they aren't really areas of concern. There are some areas, however, that we wouldn't expect to be hot spots - specifically an area in her right jaw. The numeric values (SUV) associated with all the areas (including the jaw) are very small, which wouldn't typically indicate tumor. Even a small tumor would generally have a much higher SUV. A small tumor might be too small to be seen on the pet, but once it showed it would have the higher SUV.

We talked about different scans and some whys and why nots about which scans are being done. The scans we have been doing meet the national "standard of care". We talked about possibly adding additional scans (or potentially changing existing scans), although no decisions were made.

It looks like we will be going to Seattle for a second look at Rebekah's scans. We figure it doesn't hurt to have another set of eyes looking at her scans and it might help us feel better about doing everything we can for our own peace of mind. They will probably be ok reviewing her existing scans and we won't need to redo them, so hopefully it could be a short trip.

Meanwhile, life continues... Rebekah had class this week and they continued to work on testing. We still have no results, but I hope we will have them soon. Rebekah really enjoys school. Every day we leave, she asks for more.

We took Sarah's binky away from her this week. We have been telling her that she is getting to be a big girl and big girls don't need binkies. The first night, she cried for a couple of hours asking for her binky, luckily Rebekah was able to fall asleep during Sarah's screaming. The second night she asked for her binky for about 10 minutes. The third night, she asked for it, but didn't fuss too much. All in all, it hasn't been too bad. I'm amazed. She turns two next weekend, so I figured it was about time to give it up. It seems that the terrible twos have started (at least in some ways).

Thanks, again, for your continued prayers and support. It keeps us going.

A Lot To Digest

This last weekend, the events and all of the ongoing emotions definitely deserves an update. Not sure how long this will get so bear with us.

We left Friday morning for Camp Harlow. Actually we left Friday morning for some friends that live about 45 minutes from Camp Harlow. We had not seen Ed and Pat in a long time and they treated us to a spot in front of their gorgeous brand new home, dinner Friday night and Saturday morning breakfast. Most importantly, they treated the girls to the gift of being the very first kids to play in their newly finished bonus room. The girls were really enjoying the attention that Pat and mommy were giving them while Ed and daddy hung out and talked guy stuff – just like real people!

Saturday morning we were up and out to Camp Harlow, arriving at about 11:30am. Camp Harlow is a Christian Summer Camp that this year along served 3400 grade school -- high school age kids to days/weeks of enjoyment and hearing about God’s blessings. It was a beautiful camp with lots of things to do. At the end of their season, Camp Harlow invites Candlelighters (a group that helps families with children with cancer) families to come close out the camp with them. There were horses, pool, ropes, go karts, bumper boats, putt putt golf, etc. Meals are served family style in the cafeteria. Most of the families stay in cabins and they have a few hookups for RVs that we took advantage of.

The girls were a little young to participate in most of the camp however they were delighted to meet many new friends (it was our first year at this camp and we went only knowing about 4 people that were there.) Rebekah would grab the hand of whoever was around at any time. She would pull them around and show them everything she had learned (like where the best leaves were, the pretty flowers were, the swings were, etc). Most of the time was spent walking around or riding in their trailer behind mommy or daddy’s bike. They tried the pool (with life jackets) but were very VERY afraid. I just can’t begin to tell you how wonderful it was seeing Rebekah just having fun. At one point there was a teen age girl who was getting her feeds through a tube just like Rebekah does. Rebekah ran across the cafeteria and right up to her, saying “Tube Tube Tube” and pointing to the feeding tube the girl was using. Then Rebekah pulled up her shirt and showed off her feeding tube too. It was really cute to see her “relate” to someone.

Mommy and daddy had some really big emotional ups and downs. One of the biggest things for us were the memories that the campground brought back. Mommy and daddy used to be pretty heavily involved with a ministry that worked with inner-city youths, taking them into the “woods” for camping during the summer and many of the areas of this camp (especially the rope courses) made us long for those days. And then there were some real lows, necessary lows but low none-the-less. We spent quite a bit of time talking with other families. It is amazing how much you appreciate being able to talk to someone about the things you have been through when they too have been through the same things. No matter how much others want to try and understand you just can’t have the same conversation about your first night in the hospital with someone who has never been there as you can with someone who has. And right now, as we having some discomfort with how things are progressing, it was very valuable to share with some families who have “been there.”

And I guess that brings us to where we stand. We are still waiting on our meeting with the doctors this Friday. We have not heard anything more about who will be there so mommy put a call into the clinic today – no response. Mommy is very “at peace” about our situation and not knowing what is showing up in Rebekah. Daddy is another story. He is very scared, having major flash backs about the trailer in the hospital parking lot, treatments, Rebekah in pain, Sarah having to go away to someone else’s’ home, etc. We still have not been able to sit and talk with someone about the scans that were done almost a month ago now.

Mommy and daddy are having lots of discussions about the need for some comfort in Rebekah’s current situation and it is becoming clear that we need a second opinion from a Ewing Sarcoma center. As we learn more and more about this dreaded disease we are (or at least daddy is) scared that maybe we did not do the right things. We have learned that even though we were told that every place in the country followed the same treatment protocols that maybe that isn’t true. We were told that there was nowhere else that could have provided better treatment and maybe that isn’t true. With the possibility of something coming back right now we are wondering “What if…”

Daddy has been away from the computer, away from the research and to an extent (and much to his heart’s dismay) away from anything cancer related. He is trying to go back to doing some of the things that we used to do before all of this and that in and of itself doesn’t feel right. In many ways he is afraid to get back to plan things like we used to for fear of something blowing up just as soon as we try and be normal again. Mommy has been doing lots of extensive research and being involved in a national support group. We have learned that the closest specialty center is indeed in Seattle (even though we specifically asked about this earlier…). It may be that we need to be trying to set up a trip to Seattle for a complete review of Rebekah’s situation and that scares us not only because of the cost but also because of the unknowns of whether daddy could go (being away from the office when he is the only source of income/insurance right now) or whether it means separation. We can rationalize each and every individual component of how things are right now but we don’t know what we don’t know and THAT is scary right now.

I guess that is about it for now as there is a lot to chew on here. Praise God for all he has brought us through and for the joys that were lavished upon us this last weekend (and every day with our beautiful girls). And pray for the strength to get through some of these little things as they affect us daily.

Hectic Week

It has been a hectic week. Rebekah was in class/testing 4 days this week. It seems we've been running ragged. Welcome to our new routine. The teachers and therapists seem to be making good progress with the testing. I don't know any of the results, yet.

In addition to that, we are trying to get ready for camping this weekend. Candlelighters (a support group for familes affected by cancer) is sponsoring a camp outside Eugene (2 hours south of us). We are looking forward to the camp. It will be a little different for us, since they are providing family style meals and the group is pretty big (a little more than 200). We're taking the camping trailer, but most people are staying in cabins. I'm sure the girls will have fun playing and making new friends.

We have a Care Conference set up for next Friday afternoon. Hopefully, we will get some much needed answers. Please pray that it goes well and that the people who need to be there will be.

Rebekah's eating hasn't really changed much. She is still drinking the juice boxes and when she has visitors they can get her to eat more. We still need to do some pediasure through her g-tube and I can only do a little at a time (not more than 1/4 cup).

The appointment with the ENT went well. He wasn't too concerned with where she was currently, but gave us a prescription for an antibiotic in case she got worse or started running a fever. I haven't filled it, but will have it with us this weekend just in case. Last night, she had a little bit of a fever 99.9 but today is back down to normal. We will keep an eye on it. As he told me, sinus infections can be from viruses and therefore antibiotics won't help.

It is really becoming apparent that we need to give Rebekah ways to communicate without relying on her verbal skills. So, we are looking at options. Her comprehension is so much better than her ability to express. There are so many options - sign language, pictures, a device. We are trying to sort it out a bit.

Hope you all enjoy the holiday weekend. We are sure going to try.