Bye Bye, Socks, Shoes and a Hat

We had another rough night but today had a bit of a reprieve in it.  Rebekah was actually doing pretty well today.  Grandpa and Grandma came out today for a few hours.  Grandpa helped with the tractor and Grandma took care of the girls while mommy got a little bit of rest.  That was really nice.  

Tonight, about 5:45, I asked Sarah if she want to go to my seminar tomorrow, to go “bye bye” with daddy.  Rebekah heard that and sat up and took her covers off.  She started signing socks, shoes and hat and asking to have her tubes disconnected.  To see her want so bad to get up was both wonderful and extremely sad.  I started bawling and Rebekah crawled over to me, put her head in my chest and started reaching around me patting my back.  That little girl has such a heart.

Well, regardless of how bad her immune system is there was no chance of NOT going out seeing how bad she wanted it.  We packed up the girls and took an hour trip to Fred Meyer where we could just walk up and down the isles, especially the toy isles, and let the girls look at things.  We had a few dollars left on a gift card someone gave us and we bought Rebekah a Dora The Explorer outfit that was out for Halloween.  We don’t do Halloween but if Rebekah wants to look like Dora every day she sure can!  

We saw some friends we have not seen in a while and she looked at Rebekah and asked “Is this one of her bad days?”  It was pretty difficult to tell her this is the best Rebekah has looked and acted in quite a while.  I guess it is all in your perspective.  

Clinc Day and Platelet Transfusion

Last Night at a little after 10pm, Rebekah threw up all over her bed. I was planning to stop her feeding before I went to bed, so we stopped it a little earlier. She has been thrashing around so much in bed that I didn't want to have to worry about her getting twisted up and pulling out her feeding tube again. She had been tolerating her food pretty well and had gotten most of her RDA (Recommended Daily Allowance) for the day.

She seemed to sleep better last night. Either that or I was just too tired to hear her. She still had her 8pm, 10pm, 2am, 6am, and 8am medications and we had to be out of the house by 8:15 for our clinic appointment.

Friend Gaye met us at clinic to help keep an eye on Sarah. Rebekah's counts are pretty low, which is to be expected. Her Platelets were particularly low, so doc wanted her to get a Platelet transfusion. We waited around for the transfusion. Luckily, the Platelet transfusion itself only takes about an hour. There is generally about an hour wait for the lab to get the platelets sent up. By about 1:30 we were heading home.

We asked doc about Rebekah's lack of words and could there be some damage to her vocal chords from the radiation or what might it be. He didn't think there was damage to the vocal chords because when she does speak her tone is "normal" and not low and raspy. His best guess is that her throat is sore and it hurts to speak. Also, because she is still drooling quite a bit her mouth is probably pretty sore. Doc seemed a bit surprised that she was continuing to drool. We will keep the morphine "scheduled" giving it every 6 hours for now, because of the apparent pains. We may start to drop one of the other drugs. One step at a time.

The best ways to know for sure if her throat is sore is to put a scope down it or to do a barium swallow (yeah right) and watch how her mouth, tongue and throat work. But because her counts are low, now is not the time to do it (unless there were serious problems - which there are not). If she still seems to be having problems when her counts have recovered (like at our next hospital admission), they will likely have either an ENT or Gastroenterologist (forgive me if I've spelled it wrong) evaluate it. One more wait and see. Uugh!

This afternoon Caron came by and helped greatly. It is amazing how much better it feels to see carpet (without having to look through toys) and counter tops, etc... Thanks so much Caron!

This evening, Rebekah threw up once again. This time while in Mom's arms. That was a mess! She seems to be doing ok now other than being a bit restless - tossing and turning as she is sleeping on the couch at the moment.

No Truer Words Could Be Spoken

On Monday April (Josh’s Mom) wrote:

To be honest, I’m digging in my heels, I’m overwhelmed, I’m whiney, I’m exhausted, I keep asking for a nurse at home, but…probably to no avail. It amazes me how much the medical community expects parents to take on…without a medical background…without the idea that we are EXHAUSTED and SPENT EMOTIONALLY and are already SPREAD TOO THIN! I NEED HELP! Ok, enough said.

I am repeating it here for two reasons:  1) it is EXACTLY how we feel (except that we are at least blessed with a little bit of a medical background), and more importantly 2) please pray for them – a lot!

Getting Worse

We had kind of hoped things were getting better.  Unfortunately they are not.  We had a very difficult night with mommy getting almost no sleep.  And today has been just as bad.  

Rebekah is not talking at all and has regressed quite a bit.  For a 3 ½ year old that was operating at an 18 month old level (or thereabouts) regression is pretty sad to see.  She only grunts and points at things now and cries most of the time unless mommy is holding her.  There are a few periods each day where she might be calm for 20-30 minutes at a time but they are far between. We are totally at a loss for why and will talk with the doctors more during our clinic tomorrow.  She seems to be able to speak, just won’t.  Even having Sarah around is seeming to be more of a bother to her than a treat.  

Today we had to get on Sarah for hitting Rebekah although we think Sarah was trying to be nice.  It is interesting how in many ways (dexterity with toys for an example) Sarah (at exactly one year old) seems to have surpassed Rebekah.  They are playing with the same toys but Sarah is showing Rebekah how to put things together.

The only help we (mommy) have had this week was friend Fran yesterday for a couple of hours.  Fran brings food and plays with the girls.  Fran brings REALLY good food.  In fact the Ham, Scalloped Potatoes and Broccoli last night could only be topped with the Pork Loins, Mashed Potatoes and Garlic Green Beans tonight.   In two days I have gained back 6-7 pounds of what I had lost.  Ugh.

Things are wearing on us, especially on mommy.  She needs a break and we just don’t know how to give it to her.  Pray for Rebekah to feel better and for mommy to get some rest.  Also pray for our insurance situation as our current insurance runs out on Friday.  There will be more about this in future postings.

In trying to find the flicker of joy in each day, there was a really good moment for me today.  At lunch I went into the house and sat next to Rebekah, at her request.  She just looked at me with a tear coming out of her left eye.  That tear is pretty much a constant thing that we believe is related to the radiation burns but really makes you feel like it is a peek into her soul and her feelings.  I told her over and over again I loved her but could not get her to respond.  When I told her “daddy is sad that you won’t tell him you love him” she leaned over and put her head into my chest and cried with both eyes.  Yes, it was touching.  

Another Rough Night

Rebekah didn't sleep well again last night. She was calling for mommy many times during the night. Her temperature is a little elevated (99.5) and mommy thinks that she is just not feeling really well. When asked if she hurts, she says no and when asked if her tummy is upset, she says no. It is unclear what doesn't feel well. Sarah was crying several times during the night, too. Needless to say, mommy is a little tired today. It has been a long time since she has had a good night's sleep (or even 6 hours straight).

We decided to take the taper down on morphine a little slower than recommended (with an OK from the doctor). She seems to be hurting a little before the next dose is due, so I didn't want to stretch out the next dose even farther. Maybe today we'll be able to stretch it out some. We'll see how she's doing later. One step at a time. Once we have her weaned from the pain medication, then we can start weaning from some of the other medications she is on.

Last night we started adding some nutrition back into her feeds, mixing them with the pedialyte. She seems to be tolerating it ok so far. No vomitting and it is running at a pretty good rate. I cut the rate back a little over night, but it is back up now. Throughout the day, I'll make it more and more concentrated and see how it goes.

Her counts yesterday were doing ok. They are still on their way down and haven't hit bottom, yet. No need for transfusions. Since she received Red Blood Friday night, we didn't expect to need Red Blood. She has been bruising a little bit more, so we weren't sure whether she might need Platelets. Her Platelet count was still pretty good (for her) and so she didn't need any this time.

On our way home from clinic yesterday, we stopped at the grocery store to pick up a few things. Rebekah made it pretty clear that she wanted several things to eat. She wanted melon and she wanted pretzels, in particular. So mommy bought a small container of mixed melon and two bags of pretzels. It is hard to turn her down, when she hasn't been eating much. She did eat some of the pretzels, but hasn't wanted me to give her any of the fruit (at least not yet).

Her vocabulary hasn't been great over the last day or so. I've noticed that she is not using many of her words and is grunting and pointing more. When pushed, she will use words, but she is preferring to grunt and point. She is coughing and continuing to drool, so her mouth and throat are probably sore. Hopefully, they will heal quickly and then we'll be back to normal (her normal these days anyway). Doc said that she sees a little bit of scarring inside Rebekah's mouth. Let's pray that heals, too.

Good Day - Not So Good Night

Yesterday was pretty fun and eventful.  But, as we expected, we (us and Rebekah) paid for it last night.  In addition to the every 4 hours for medicine, it seemed Rebekah was waking mommy up and calling for her every hour.  We are not sure whether she was having bad dreams, medicine reactions, withdrawals or a bad not for some other reason ?!?!?!

Mommy and both girls are off at clinic this morning where we will find out how last week’s chemo has affected Rebekah’s immune system and what our plans will be for the this week.

Thanks for sticking by us in the good and the bad!  (Every time I put an exclamation mark I think of Jemmers!!!!)

Live Strong Ride & The Day

We got up bright and early to head out to the Live Strong Ride. We met up with friend Christine and Frances' brother Chuck and nephew Cole who were going to join us. We had a bit of difficulty getting to the right location inside of the Nike campus and were running much later than we anticipated. There were two peditaxis to take the cancer kiddos (and their families) for rides and more kiddos than could fit on a single trip, so we waited for our turn.

Lance and his entourage headed out first along with the first group of kiddos on the peditaxis. We never got a chance to meet Lance and as I understand it, he wasn't going to be able to spend much time after the ride.

We eventually got our turn on the peditaxi and Rebekah, Mommy, Uncle Chuck and Cole were able to get a short ride around the area. We actually came back onto the Nike Campus the same way the riders would come in. There were two lanes, one for Cancer Survivors and one for everyone else. They were handing out yellow roses to the cancer survivors. In our case, they gave one to Rebekah, one to Cole and one to Mommy. It sounded like we were the first riders through the finish line, so there was a little bit of fanfare.

We took a stroll through the area to see what all was going on. Since it was still pretty early, there wasn't too much, yet. They were starting to set up food concessions and the music stage was getting ready. The Live Strong store was open, Lance's Chopper (motorcycle) was on display, there was a wheel to spin and win a prize, and "I'm a Survivor" and "In Honor of" and "In Memory of" badges, etc...

This afternoon and evening, we had another birthday party for Sarah with Frances' family and a few friends. Rebekah, Sarah, Cole and JJ all enjoyed playing outside on the play structure and JJ would take Rebekah for a ride in the wagon (sometimes with Sarah, too). Neighbor Lisa brought one of her puppies over for the kids to pet. Fun was had by all.

Because Rebekah was having so much trouble keeping her food down, we have been giving her Pedialyte instead. The biggest concern right now it to keep her hydrated. She is continuing to drool pretty heavily, so she's loosing fluids with that as well as the normal methods. With all the vomiting, she wasn't taking much in. So far, she has been keeping the pedialyte down. We'll need to switch her back to "formula", but we'll take it easy. Pray that we are able to make the transition back to formula without trouble.

We are still in the process of weaning Rebekah from the pain medications. So far there haven't been any "really" bad times. Please pray that she does ok with the continued taper down.

Here is More - Back Home

9:09pm:  We were obviously able to come home from the hospital today.  

This morning daddy went down to the 4 Paws For A Cure walk that friend Christine was doing for Rebekah.  There were not too many people there but it was neat to see people walking for a cause with their puppies.  Christine wore pictures of Rebekah and handed out some bracelets and business cards.  Christine’s friend Jen also walked with here.  Thanks Ladies!

When I got back to the hospital mommy was packing up and trying to get ready to go.  Rebekah was trying to help and was very clear that she was wanting to go home.  By 1:30pm we were loaded up in the van and trailer and heading home.  The entire way home Rebekah kept asking for Chi Chi and pointing to the empty car seat next to her.  When we got home she was going around the house looking for her sister and asking for her.

Grandma M brought Sarah and dinner over around 6pm.  That was pretty awesome as Rebekah and Sarah played together quite nicely.  They both played with a toy Sarah got for her birthday last week, a hippo that drives around and picks up the things it runs over.  First Rebekah was pushing Sarah on it and then vice versa.  Rebekah was in such good spirits and we really liked that.  

Medicines tonight were/are at 4pm, 8pm, 10pm, 11pm, 2am and 6am.  Hopefully she will be able to sleep through them – we wish we could.  Tomorrow morning we are supposed to be at the Lance Armstrong ride by 7am.  We are planning on taking lots of pictures and try and get some of them up here and/or at the photo journal section of www.HelpRebekah.com  

Pray for a good day with lots of positive exposure for Rebekah tomorrow.

More Later

More later but we are home and Rebekah seems to be doing well enough that we are going to try and do the Lance Armstrong Ride tomorrow as an honored guest.

Rebekah was borderline until Grandma M brought Sarah to visit.  Now Rebekah is doing awesome!

Some Pictures

Rebekah has had some really high highs and low lows today. She is really happy and having fun and then gets sick and, well, isn't happy anymore. Unfortunate she has been throwing up most of the afternoon after we took these pictures. Anything that gives just a little bit of excitement seems to result in sickies.

Amy came by to provide some therapy to Rebekah and we were able to snap some pictures:

We know it is working on balance - Rebekah just knows its fun!


To Rebekah it is shopping - to us it is practice walking:


It is definately hard to work with all those tubes hanging off us and her IV pole being her constant "Friend" but we do what we have to do. Have a good weekend.

Friday - And LOTS of Weekend Events

It’s FRIDAY!       Not that this really means much when the hospital walls (or inside of trailer) are all you get to look at or a hospital bed is all you have to lay in all day.  But, nonetheless, it is Friday.

Rebekah had a rough night.  Yesterday we took her off of her narcotic patch and she is going through some pretty tough withdrawals.  She is throwing up and shivering/shaking quite a bit and it is not related to being cold.  It’s a good thing to be working to get off the pain medications but very difficult for someone who has become dependent on them.  

On a good note, Rebekah has a date on Sunday.  Assuming she is well enough she has been asked to join Lance Armstrong, as an honored guest, at a fundraiser bike ride put on by his foundation and Nike.  Rebekah gets to ride the ride on a “Taxi” bicycle and be honored throughout the days festivities.  Check out more information on the ride by clicking HERE.

In addition to this, friend Christine is walking in the 4 Paws For a Cure dog walk tomorrow, Saturday.  Christine is walking in honor/support of Rebekah and will be wearing her picture, and handing out cards and bracelets.  THANKS Christine! I have to tell you that when Christine first asked for a picture and some support materials for this walk it took me two days to even be able to get back to her.  I was so emotional that even reading her email saying she wanted to do this made me cry so hard I could not type.  Even now I am in tears as I write this.  

The pain of all of this is difficult and makes us cry.  But what makes us cry even more, but of joy, is the support we receive from so many of you.  We could not have made it this far without it.  Thank you all.

Doing GREAT!

Rebekah is doing great and we are excited!  She was up on and off throughout the night wanting to be “All Done” with sleeping but not sick or anything.  She was out of the room with therapy and playing most of the morning and enjoying it.  

Daddy got back from court and errands just as we were coming back in the room and he got to help give her a bath and change her.  Rebekah noticed right off that he was wearing “her” tie – a tie bought for us from friend Suzanne that has the handprints symbol from the American Children’s Cancer Society all over it.  It is pretty much the only tie daddy wears now.

After her bath Rebekah had the music therapy gal waiting and got to plan guitar and sing.  

I bet she sleeps most of the afternoon!  Thank you all for your uplifting prayers and support.  We have really felt them this week and cannot tell you how wonderful it makes us feel.  For those of you that have sent checks and helped with PayPal donations at www.HelpRebekah.com or by going into your local US Bank, an extra special thank you!

Too Much Excitement?

What an exciting evening – and that is not always good!  

Grandpa came by around 5pm to pay some attention to Rebekah.  He also took care of going to get some Pizza for dinner which was awesome.  We also had to deal with putting a car seat into his car because he and Grandma C will have Sarah starting Friday evening.

While dealing with the car seat, getting food etc. Debbie brought Sarah back.  Oh ya, the whole world also came to a stop to watch a plane flying around LA with nose gear problems.  Every nurse, room, patient, TV etc. glued to watching what, thankfully turned out to be non-eventful.  Debbie helped pull Sarah and Rebekah around together in a wagon.  It was really good to see the girls together for a while.  We had to get a trunk full of stuff and a car seat (that goes with Sarah) out of Debbie’s car and up into the room.

Keeping track?  We now have Rebekah, Sarah, mommy, daddy, grandpa, Debbie, a wagon, two strollers and two IV poles (not to mention poor nurse Wendy trying to get stuff done) in a room barely big enough for two people most of the time.  

Then Debbie left and Daryl and Ginger came to get Sarah.  A stroller, car seat and pile of stuff all down to their truck while the girls continued to play together in the bed or in the wagon.  Once we got all that loaded we had to go out to the trailer to get the play pen that also goes with Sarah.  SO MUCH STUFF!  Daryl and Ginger will have Sarah until Friday.

When I got back to the room about 8:15pm Rebekah had finished with her wagon ride and was throwing up all over the place.  I guess we had just a bit too much excitement.  Pray that she and mommy will get better for the evening.  

Also while all this was going on I ran into Gage’s mommy in the hallway.  Now Gage, Rebekah and Josh are all here together.  Gage and Josh are not supposed to be here and are because of complications.  Please pray for all of them.

More of the Same

Rebekah continues to plateau this week – which is a good thing.  She had an upset tummy this morning and threw up a bit but then she went for a wagon ride with mommy and has been sleeping for a few hours since then.  She has finished her 24 hour kidney function test and they are removing the catheter shortly.  At least some of the tubes are going away.  

Although Rebekah is doing well, mommy and daddy are feeling a bit cooped up.  It is definitely tough being away from home and the office.  

Josh is down the hall from us and mommy got to see Maggie and her mom downstairs eating some food in the cafeteria. Its good to see some familiar faces but bad to be seeing them here.  

All The Kids

Rebekah continues to be drowsy but is doing just fine.  Well, as fine as can be expected for all of the tubes coming out of her, all of the chemicals going into her and having to be stuck in a hospital bed.  Thank you all who have volunteered to come help wheel her around in a wagon.  Depending on how tomorrow goes we might try and set up some visitors on Thursday or Friday.

I would ask that those of you who have been faithful to visit our site and pray for us as well as those of you who are new to this site to take a moment to visit the sites of a few of other kiddos that we have gotten to be pretty close with.

We have talked about Maggie May a fair amount and her family continues to need our prayers.  

We have also talked about Josh quite a bit.  Josh is experiencing some really tough times right now and this just should not be as he was done with his chemo during our last “Emergency” 13 day visit.  He SHOULD be done with this.  It’s just not right.

Finally we have mentioned Gage before but did not know his web site until recently.  He shares the same Ewing’s Sarcoma that Rebekah does.  Gage is getting to go to Boston this week for a different kind of radiation – one that Rebekah was not offered and we wonder if we somehow should have considered it more.  We wish Gage and his family the best – they are great people and also need your uplifting prayers.  

All of their pages are available by clicking their names above or through the links section down and to the right of this blog.  Thank you for caring not just about us, but about all of these sick kids.  We sure do.

Seeing My Girls

Just got back from lunch with my girls.  Rebekah is pretty doped up as they gave her some versed to help with putting in her catheter.  Debbie had brought Sarah over to visit and Rebekah was not aware of much but WAS aware that Sarah was there and even held her sippy cup up to offer Sarah a drink.

Sarah was being rambunxious (sp?) and running all over the wing, trying to climb out of Rebekah’s bed and generally being a wild one year old.  

This whole round of drugs and chemicals will continue throughout the week and Rebekah may or may not be affected by it this week.  In the past she was waited until after we were home before the effects of this set started to hit her.  Let’s continue to pray and hope that all goes well.  Hopefully Rebekah may even be up for a wagon ride or two around the hospital later this week.  Any takers?

Tuesday Morning

Yesterday we packed up and tried to be out the door by about 8:00am with both girls, the trailer, etc. all ready to be gone for a week plus.  

At 9:30am we had an appointment with a photographer for Portland Monthly magazine.  They are doing an article on Kory’s Foundation, a SPECTACULAR organization that helps families with the same type Cancer Rebekah has.  They have helped us SO SO much and the only reason that daddy is able to be at the hospital most of the time is because of them.

At 10 we were in clinic getting blood and other labs tested and being readied for admission.  Rebekah’s blood counts came back okay and after about an hour and half we were admitted to room 3522 in the school age wing.  Rebekah got her dressings changed which is always a traumatic event as it is somewhat painful and hooked up to all of her tubes, bags, chemicals, etc. and we were on the way towards another week of chemotherapy.

Please note the picture on Rebekah's wall next to her bed. This was done by a friend that we have not met, Lilly (I hope I have that name right but I forget for sure right now). She asked her mommy's friend, who is a nurse, to bring it to us here at the hospital and Rebekah, who normally does not like pictures that close to her bed really wanted it it right there!


While we are here this week, probably today, Rebekah is going to have to have a catheter put into her bladder to collect her urine for some testing.  As part of the chemotherapy protocol they need to observe how her kidneys are functioning or how they are being affected by the chemicals.  They collect for a 24 hour period.  This will be fairly difficult for her – yet another tube coming out of her.  This will make 4 invasive tubes into her body at one time.  Pray that she tolerates this well.

About noon yesterday friend Debbie came and took Sarah home for a couple of days.  Debbie lives pretty close here and her family seems to need a baby fix so they can have Sarah for a couple days.  That will definitely fix her fix!  Thank you Debbie and family.  Later this week Ginger and family will have Sarah and then hopefully some grandparents will have her into the weekend.  It is definitely hard finding 24 hour/day babysitters for weeks on end and it is even harder being apart from your little girl like that.  

A NONupdate Update

I KNOW you all are waiting and waiting.  I am sorry for not getting sooner but things have been a bit hectic.  

In the middle of packing to go to the hospital yesterday daddy got an emergency call (he is a volunteer firefighter/EMT for those who did not know) and got to assist with delivering a baby – something many EMT’s go their whole career without doing!  It was really awesome and baby and baby’s mommy are doing great!

We are just getting settled into the hospital.  Been here since 8:45am and just now getting the trailer parked and a connection up and running.  There are some events to up date you with and will do so later.  Some ups and some downs, but all in all we are here for another week.  Updates usually get to come a bit more frequent since we don’t have a lot of other things to do so please keep checking.  

More later.

A VERY busy day.

This morning.  They came.  They stacked.  They split.  They left.  Somewhere between 7 and 8 cords split and boxed and another cord and ½ or so split and thrown into a heap pile.  THANK YOU SO MUCH for all of the help from so many places.  And while we were outside doing that Annika was inside painting more animals!  Hopefully I can go back and edit this with photos later.  

Then this afternoon we had Sarah’s first birthday party.  More family, presents, food, cake, etc.  Sarah loved it and Rebekah was so wound up with all the energy that she was up and about, directing everybody what to do, “helping” Sarah open presents and even eating a little bit.  Mostly ice cream and frosting off her fingers but it was eating.  Sarah and Rebekah played/worked so well together.  It was awesome.  

I am sorry this is so short but it is VERY sweet.  We are tired as you can imagine.  Tomorrow we pack for another 6-7 days at the hospital.  I just looked at the trailer and it is a disaster area inside so we have lots of cleaning to do before packing.  At least we have a day to do it.  Knock on wood.  Pray for strength and stamina for another day at the hospital.  

And if you have not been there recently, go check out Maggie’s Page.  Pictures of Disney, Rod Stewart and everything!

On their way home.

Mommy just called and they are on their way home with a new tube placed.  Rebekah does not seem to be too upset anymore and mommy seems A LOT less upset!  

We are hoping for a really good turnout tomorrow for wood cutting.  Not too many people have let us know that they were coming and we sure hope  a lot of people come anyway.  

Everything was going so well.

Everything was going along so well.  Rebekah was getting some energy back and up and walking a little bit.  That is where the problem came up.  She decided to go for a walk only her IV pole and feeding bag didn’t go with her.  We ended up with an awful mess as she pulled her feeding tube out of her stomach and abdomen and stomach “stuff” when everywhere.  

We couldn’t get any help with Sarah in an emergency so daddy is home with Sarah and mommy is heading to the hospital emergency room with Rebekah.  Stay tuned for further updates.

So far wood party tomorrow is still on.  The doctor on the phone said they could probably put another feeding tube in at the emergency room and send her home tonight still.  Will let you know if anything changes.  

The Day After

Thank you all so much for the blessings on our last day of radiation.  Once finally home Rebekah slept most of the day and into the evening.  About 9:00pm she wanted up and to come out in the living room.  She sat on the couch and opened up the presents that she had been given earlier in the day.  She LOVES the magic wand that makes noise and lights up etc.  She also have very clear ideas where the wind chime she was given should go.

We want to clear up a small misconception that some have had.  Although rejoicing to be over the daily early morning trips to the hospital, we are no where near done with her treatments.  Her chemo therapy continues into next year.  We will still be living at the hospital between 1/3 and ½ of the time.  Our sincere hope is that she continues to manage the chemo therapy as well as she has in the past but the cumulative effect is scaring us a little.  

Today we have a new friend from Quiet Waters Outreach (a group that provides respite care for parents and siblings of those with disabilities like Rebekah’s Cerebral Palsy) coming to watch over Rebekah while we take Sarah to get her one year shots.  We are absolutely sure Sarah will love that…    

Please continue to pray for ongoing protection from the long lasting effects of radiation, for strength, and for the ability for us to get a few things put in order around here like the wood party this weekend.

Last Day of Radiation

Radiation is complete. This morning at Radiation, Rebekah got presents from the primary anesthesiologist as well as the primary nurse. She didn't have much interest in opening them while we were there, but she did open one of them in the car - it was within reach.

She was rather cranky waking up this morning. I think she's getting tired of whole treatment, especially the Radiation.

We had time to spend between Radiation and her Eye appointment, so we went to Target to do some shopping. Mom spent some of her birthday gift card on a variety of things.

Her eye appointment went well. She didn't want to cooperate too much, but with some encouragement the doctor was able to get a good look at her eyes. She has conjunctivitis in her left eye (which is commonly known as pink eye). The doctor prescribed some eye drops to help with that. Otherwise there are no signs of current problems with her eye. That is good news! Realistically, the problems would not be expected this early, but it is good to know that there are no serious issues now. The eye doctor wants us to continue to use the lubricating drops once we've done the week of antibiotic drops. Rebekah will fight having the drops, but it is important.

It has been a big errand day with Rebekah in tow, so Mom is pretty tired. Both girls are currently sleeping. Sarah stayed with friend Rae this morning, so Mom didn't have to worry about her through all the appointments and errands. Thanks Rae! It will be nice to sleep in tomorrow morning...

Rebekah Played

This afternoon Rebekah and Sarah played "Push Mommy Over", "Dog Pile on Mommy", and "Sippy Cup Pass Off" for about a half hour. Then Rebekah saw one of her toys and wanted to go get it. She seemed to want to play more, so I asked her if she wanted me to disconnect her from her feeding tube so she could go freely. She said yes, so I did just that.

For another hour, she played at her kitchen, with her sister, and then when her sister was getting something to eat in her highchair she wanted to sit in her booster chair (on the floor) right by Sarah. She wanted some goldfish like her sister, but after eating one decided she wanted to lay down and have her feeding tube connected back up.

Several times, she wanted to go look at her new room. I told her we would do it later and when friend Ginger stopped by, Rebekah showed her the new room and the trees and bunny and cat and butterflies... She had a good time showing it off.

Speaking of Ginger, she brought out several meals for us, including tonight's dinner. What a blessing! Thanks so much Ginger (and everyone who helped make them).

It is great to see Rebekah expressing some of her desires. My little girl is coming back! I am so happy!

Tomorrow is the last day of Radiation! Hip Hip Hooray! Tomorrow is also when we will see the opthamologist about her eye. Please pray that the day goes well.

Rebekah spent part of the morning throwing up, so Mom wasn't sure how the day was going to go. After that episode, she seemed to do fine. Of course, it was just after giving her some medications (one of them being her anti-nausea med). I'm not sure how much of them stayed down, but didn't want to double her up on any of them either. So we let her be and she seemed to do ok.

The New Room

Now we HAVE to get the new room finished fast.  

Rebekah is apparently tired of laying in bed or sitting on the couch.  The last couple of times she has had bursts of energy have been late in the evening – you know, when mommy and daddy are trying to go to bed…  Rebekah just kind of slid off the couch and started crawling towards the new room saying she wanted to go in there.  Mommy and daddy were able to help her walk and she was fascinated with the trees and animals Annika has painted.

She kept walking along the wall where everything is painted and pointing and making sounds we couldn’t quite determine.  She noticed right off that one tree had a squirrel in it and the other one didn’t.  She also noticed the butterflies were different colors.  We were able to ask her a few questions about putting more animals and where she wanted them.  All we could get from her was a very faint “yah” but she kept pointing all along the floor.  SHE LOVES IT.  As soon as she helped us close the doors she wanted back in.  

She knows it is her room!  WAY COOL !!!!!

BUT WAIT - THERE'S MORE. She was just not content to sit there and kept saying she wanted to BACK into the room. So we did. Then she said she wanted daddy to get the camera to take pictures of her and the animals. Well, ok, she said "yah" when I asked - which is not that common.

"Look Mom A Tree!!!!!!"


"I am SO happy!!!!!!!"


"I am even walking!!!!!!!" It might be unsteady and it might require help but it sure is a joy to see.

Two Radiation Treatments Remaining

Two more radiation treatments remaining! We are nearing the end of Radiation and halfway through Chemotherapy. It is hard to believe that we have made it this far. There is still much more to go, but some steps are behind us.

Today was a clinic day, so after Radiation we hung around for our appointment. Friend Pat came with us to help keep track of Sarah. While we were getting a bite to eat in the hospital, nurse Susi saw us and came over for a quick chat. She and some of the other staff had been looking at today's schedule and they didn't think that Rebekah needed to come in today because her counts we up last Friday. I had a few things that I wanted to discuss with the doctor, so I figured it was good to come in. They usually want to see us at least once a week, too.

Her counts were still doing fine. They are down a little, but that is to be expected.

She seems to be congested (from a cold), so I asked the doctor what (if anything) I could give her for that. She said that I can give single ingredient cold medicines like benadryl or robitussin dm, depending on the symptoms.

Rebekah's left eye is pretty red and it bothers me. I don't know for sure that it bothers her, but it worries me. I asked doc about that, too, and she suggested that we get Rebekah in to see an opthamologist. We could either go to the one we've seen before or she could refer me. Once home, I called the opthamologist that we had seen before to schedule an appointment. They weren't able to get Rebekah in this week with the same doctor and since we are in for chemo next week it would be a while before we could get in. I asked if we could see another doctor this week and was able to schedule an appointment for Wednesday morning with a different doctor (but one that I have seen several times). Please pray that all goes well with that appointment and that there will be no signs of damage.

Around Rebekah's G-Tube her skin is pretty sore. We want to be very careful about infection, so I wanted to know what we could do about that, too. Doc thought it looked more like skin irritation than infection and suggested that we use a "barrier" ointment like desitin to protect the skin from any seeping.

While at Clinic, we ran into Gage and his mom. They still have decisions to make, so please pray for them. We also ran into Kennedy and her mom. Kennedy was not having a good day. Her mom wasn't having a good day either. She seemed frustrated and I could see her concern for her daughter. They could use some prayers, too. It seems to me that there are soooooo many kiddos with cancer and they all need prayers. I know that my view is quite skewed, since much of my time is spent around the cancer clinic and the hospital. Yet I know there are many families that are coping with cancer in their kids. Uugh!

Oh How I Wish

I am torn, mad, confused, upset, sad and…  We just got finished watching Discovery Channel’s special on Flight 93 for this 9-11 anniversary.

What brave men and women that fought and gave their lives to do the most difficult thing in the world, killing those that were doing evil and saving so many others.  At least I used to think that making the decisions they made to save others would be the most difficult in the world.

Now I wish I could make that decision.  I wish it were an option for me.  I wish I could kill someone evil or make a self sacrifice to save someone else – not just anyone but Rebekah.  Not in any way to take away from these absolute HEROES but what is far more difficult is NOT being able to take another life save the innocent, or not being able to give up your own to save another.  What a horrible thing to wish for but oh how I wish I could…

Rebekah slept most of the day today and just now, at 8:00pm she is sitting up on her own on the couch. She was out a little bit this morning when Annika was painting the playroom but she was not feeling well and was not too interested in what was happening.

The radiation burns are coming back but we are hopeful that they will not get too bad since this is supposed to be the last week. Please pray for the long term side effects as that is what we are most concerned about and hoping she will be protected from.

As she was sitting up tonight she had mommy's palm pilot in her hands looking through the pictures of herself and her sister - something she loves to do anytime she sees one of our palm pilots out. Here is our cutie just minutes ago:

Moving Right Along

As any parent of any young child knows, the goods (highs) do not come without the bads (lows). In this case we had a fall out after we got home last night. Too much activity going on all around Rebekah really started to get to her and we think she got over-tired. Easy to do when you have chemicals and radiation taking away all of your energy to begin with. Mommy and Grandma M spent several hours trying to calm her down and get her to bed. What is really neat, however, is that this is fairly typical behavior from a youngster - to have some behavior that is "normal" is a God-send!

On another note, we are moving right along in the playroom addition. The electrical outlets are all in, the lights all in, the door is now in and the final painting is being done. Daddy did most of the electrical early this morning and mommy and daddy took care of the door together. The coolest (and hardest ) thing being done is the painting - a work in progress thanks to Annika:


We are really a little scared to actually accept that we have had a few reasonably good days. We know there are more lows to come but these last few days have helped to replenish some energy.

My Little Girl Makes My Day

Very quick to the last post, but I just had to put this up. While I was putting up the last update Rebekah came walking down the hall - 30 feet or so. Yes, Rebekah walking! Mommy was helping but Rebekah asked to come to daddy who is sitting in Grandpa's office at the computer.

She wanted to sit in my lap and see pictures of "Ohhh" (Her name for herself which is combined with being said and pointing to herself). We did something we can't even do from home (because Grandpa has high speed) and watched the video "Rebekah and Her Doggie" in the photo gallery over on www.HelpRebekah.com. Every time the doggie fell over Rebekah would say "uh oh" and point to the screen. Then, when it was over, she would sign "more" time and time again. We must have watched it six times.

Finally she reached down on Grandpa's desk and took all of his pens (3) that had the caps on the "Wrong" end and made sure they were put on the right end!

That was enough exercise that she is now completely beat and wanting to go hide in a room with just mommy but having her in my lap, watching a video with her of her, and having her enjoy it through all of the pain was so delicious.

I am SO thankful for moments like this, even when they only come in 30 second to 10 minute intervals every few days!

We are Here

Only you don't know where "here" is. We have some relatives from out of town (Jean and Mary) that are out and Grandpa and Grandma's for the day. We have been hoping so much that Rebekah would be well enough for us to get to come out. It was hit and miss all the way up until time to go but we decided to come anyway - because Rebekah said she wanted to go bye bye in the car.

Rebekah had been doing so well, eating a few bites yesterday and keeping food down. Then this afternoon she threw up everything from this morning while trying to give her a bath. At least her timing was great since she was sitting in just a diaper and on a water proof towel.

She hasn't eaten anymore but she wanted her cup with apple jacks and pretzels back this morning because Sarah was begging from her and she enjoyed feeding them to Sarah. Rebekah is really trying hard to teach Sarah how to sign "more" and "eat". Sarah has figured out that when people want her to "Say" something she should shake her hand in the air. She hasn't gotten much more down, but that is at least neat.

Trying to get ready to come out here was a trick. We had to get her food pump put into the van which meant getting an AC Inverter wired up. The pump has a built in battery but our experience is that the battery is more for moving from one place to another and that our hour plus trip to ANYWHERE and then walking around somewhere is not what it is intended for. Now we are set for long term trips in the van which, hopefully Rebekah is going to be up for. The downside is that the battery in the van was dead. The electric cooler has been left on one too many times and the battery just won't charge up right anymore. More expense! UGH!!!!!

Tomorrow Anika will come out and finish the painting of the new playroom. All we will need then is carpet and it will be ready. We still have some finishing wood work to do but that is not crucial to getting the room into use.

Please pray for a good day here at Grandpa and Grandma's and strength for the last week of radiation.

She's Eating (at least a little)

Mom, Rebekah and Sarah were out of the house this morning a little after 5am. Cousin Anne and her son JJ, met us at Radiation this morning to help watch Sarah. Today was a clinic day, so after Radiation was complete, we headed over to the hospital to wait.

Rebekah said she wanted to eat, so we stopped at the "Heart Beat Cafe" to see what looked good to her. She wanted a muffin, so Anne bought a blueberry muffin for her and JJ to share. Rebekah wouldn't touch it, but Sarah ate nearly half of the muffin.

Then we headed up to the Play Room where JJ and Sarah could play while Mom and Rebekah went over to clinic. We still had more time to waste, so we stayed for a while, too. Rebekah sat for a while in Mom's lap playing with the train set. She didn't have a lot of energy, but some. JJ seemed to have lots of fun playing and Anne really seemed to enjoy having Sarah fall asleep in her arms for a little while.

Her counts today are actually High. She must have been on her way up when we were in on Tuesday. The doctor didn't need to see her. We did need him to prescribe some additional patches for pain medication. So we had to get that prescription filled and another one refilled. While we waited for the prescriptions we stopped in to see Grandma C. Rebekah told her she wanted to eat, so we wandered over to the cafeteria. Rebekah said she wanted Apple Jacks cereal and pretzels, so Grandma C bought both of them for her. As I type, she is sitting on the couch with a bowl that has some of each of them in it and she is eating. She has had several of the pretzels and some of the apple jacks. She is eating them very slow and being very deliberate with her bites. I think it hurts a little and she's trying to eat on her right side which isn't nearly as sore as the left. Nonetheless, SHE IS EATING.

Her nutrition is up at the rate we were at in the hospital and she's been doing ok with it. We may bump it up a little, to get more into her. Since she is still not getting as much as "Recommended Daily Allowance" when it has to be off for 8+ hours for anesthesia for Radiation. Her weight was up from Tuesday, but still down from last Friday. Last Friday's weight was probably elevated a little from all the fluids she had been getting in the hospital. Then she wasn't keeping stuff down over the weekend, so she lost weight. Little by little, we will get some of that weight back on her.

Friend Fran (who was here yesterday), stopped by today to bring dinner. She and her husband were going to the beach and she just couldn't drive by without stopping and bringing us a meal. Thanks Fran! Sorry Rich for the gravel. Rich collects cars and wasn't thrilled with the half mile of gravel to our house. He wanted to know if the other way was less gravel. No such luck.

Rebekah has not been drooling as much the last couple of days as she had been for the last 3 weeks or so. We didn't need to give her the medication to dry her secretions before anesthesia this morning. Either her mouth isn't as sore or the Radiation is starting to dry her up a bit or a combination of the two. She did just fine without the medication this morning.

Rebekah has been coughing quite a bit today. She has gunk in her throat and some of it is being coughed up. She is not thrilled with it, but I'm sure it is helping (to get it out).

Maggie seems to be having a great time in Disneyland. If you are checking in on her, you'll have to look at the Guest Book to see the latest comments from her Aunt Kimmy about what is going on down there. The updates are there and not in the Journal. Sounds like everyone is having a GREAT time.

Please continue to pray for Maggie, Josh, and Gage.

Hope everyone has a great weekend!

Others Are In Need Too - Updated

Please don’t forget the others.  Josh is really in need of prayers right now.   Maggie is having fun but still in need.  And we have not heard from Gage lately but we know that they have some major needs as well.  Please be in prayer for all of them!

September 10 Update: We also want to add Oliver to this list. There are so SO many kids that need our prayers that we have been trying to keep our requests here to those that we have personal contact with in our trials. We know of Oliver but have not met him. He is very close to Josh and Maggie and we therefore want to add him to our close circle. I know that he was supposed to have a marrow transplant a week ago but have not been able to find any updates or a site for him. More info when and if I find it. Oliver, mother Robyn and your entire family are in our prayers!

Pins and Needles? And An Announcement

OK OK OK – You HAVE to have an update says Steve.  ANNOUNCEMENT;  Next Saturday, the 17th, we will be having a wood splitting/stacking party at our home at 8:30am.  It is our hope that we can get all of our wood needs ready for the winter so we don’t have to deal with that daily throughout the winter.  It should only take a few hours if we can get lots of you to come out and help.  Please give us a call to let us know you are coming at 503-324-0111.

Earlier:   I know a lot of you are waiting on “pins and needles” for an update.  And I don’t have one for you    :(

Mommy is still at the hospital with both girls and daddy is at a seminar all day to at least TRY and keep current with his certifications.  

Hopefully mommy will get you an update once she gets home from the hospital.  But THANKS for checking!    

A Good Day

Rebekah was up and "active" for about three hours this afternoon. By "active", I mean that she was sitting up on the couch and wanting books read to her. She couldn't decide if she wanted to sit in Mommy's lap or next to Mommy or totally on her own, so she went back and forth a little bit.

At one point, she wanted to pick out a book herself. Since the books were across the room, I disconnected her from her feeding tube and she actually walked (very wobbly but she walked holding mom's hand) across the room to where the books were sitting on her desk. Once there, she wanted Mom to pick her up and help her pick out a book. Once she had picked two out, Mom set her down to walk back, but she sat down where she was. She turned the pages on the books. One of them was a "touch and feel" book and she was feeling the different parts. Sister came over (she just finished her nap) and played jungle gym on Rebekah. It was good to see Rebekah acting a little more like herself.

Sarah kept taking the books and blankets away from Rebekah, which didn't make Rebekah too happy. They were sure interacting with each other. It was fun to see Sarah playing peek-a-boo with one of Rebekah's blankets. Mom sat for a while with both girls on her lap reading books to them.

Friend Fran came over and spent several hours watching Sarah (so Mom could get a little bit of a nap) and cleaning and brought dinner and some groceries. She was a great help and Mom was able to rest for a couple of hours anyway.

Rebekah has 4 more Radiation treatments. It is great to be able to count them down.

She is doing better with her feeding. She is almost back up to the rate that she was at while in the hospital and her food is fully concentrated. She really needs to be a bit higher, but it is more important that she keeps it down. Keeping her up on the medications seems to be helping with the nausea. One step at a time... It has been more than 36 hours since she threw up. That is a good thing!

She continues to "talk" about eating, although she really isn't doing any eating. She says she wants to eat and wants to sit in Sarah's high chair, but won't eat. At least she doesn't seem to be totally against the idea of eating. We continue to encourage her.

The Record Spins and A Confession

We are back from radiation this morning.  It continues to be difficult for Rebekah to come out of her anesthetic.  The new machine (the one that does the more intensive radiation) takes a bit longer so we are not getting home until 8:30 or 9 after leaving the house around 5am.  

While she was “under” this morning we were able to get her mouth scrubbed out with some antiseptic wash that she is supposed to use daily on the sores but will not take while she is awake.  We were also able to get her nails trimmed!  

She made it through the night pretty well last night and we only had to change the sheets once, right before we went to bed.  Mommy, on the other hand, is getting pretty tired at getting up every 2-4 hours.  We thought we were through this once Sarah started sleeping through the night!  Mommy had to hit her “snooze” bar 3 times at 4:30am this morning.

Over all the last 24 hours have been pretty good.  Rebekah slept ALL day yesterday with no time up for play or even awake to watch her sister or anything.  We just hope that is “healing” time.

I do have one confession – last night I, daddy, was feeling pretty bummed about the low site hits when I “left” the office about 6pm.  Then, when I got back this morning there were not only A LOAD more hits than normally come in during the evening but also two donations at www.HelpRebekah.com.  I have said it before, but it IS amazing how much God takes care of uplifting us even in the smallest ways (like caring about hit counts when we really shouldn’t).  I feel a bit selfish about caring how many people read her site but then, at the same time, I want the WHOLE WORLD to hear her story, what is happening to and through her, and to be praying for her and the extra special kiddos that we often talk about here.

A Broken Record?

It was another long night.  Even all of the medicine did not totally keep her food down and, in addition to the regular medicines every 4 hours we were up at 3am changing the bedding.  We have gotten pretty routine with this, mommy holding Rebekah sitting on the second “helper’s” bed in Rebekah’s room while Daddy puts on new sheets.  

Then mommy and Rebekah were up and out at 5am.  Daddy was supposed to be taking Sarah to friends Mike and Tara at 6am but Sarah was sleeping so sound that I took the chance that mommy and Rebekah would be home on time and called Mike and Tara and said I will watch over her rather than wake her up.  We really appreciate Mike and Tara’s continued help (cleaning the trailer, planting plants to keep the house pretty, etc.)!

Mommy and Rebekah got home about 9 or 9:30.  Rebekah is coming out of the anesthesia from radiation more and more difficult each day.  We are so excited that there are only 2 more weeks of the radiation.  The burns are definitely starting to appear again on her face and we are really sad about that.

Yes, we are beat but getting by one hour at a time.  Mommy especially is needing to nap every second she can get which is not very many.  Thank you for those of you that have helped so that she can get some sleep.

I feel like a broken record repeating the same information each day but that is our life right now.  Thank YOU for hanging in there with us.  And remember – pray for Maggie to enjoy Disneyland this week.

A very special gift!

We would like to issue a very VERY special thank you for a very VERY special gift received today at www.HelpRebekah.com.   Thank you William and Patrick, two disabled 11 year old twins who follow Rebekah’s blog daily and have each chosen to give Rebekah $5.00 out of their birthday money.  We love you guys even though we don’t even know you!

DRUGS!

Rebekah has slept most of the day.  It is likely a “drug” induced sleep caused by the Ativan that she is getting to keep her (and her systems) calm.  We are getting to the point where we are giving her drugs that can have some pretty serious risks of side effects but those risks are better than the alternative.  

The good news is that her concentration and her rate of G-Tube feeding is up and she has not thrown up since last night.  Mainly this is due to the increase of the Ativan dose and the introduction of an additional anti-nausea drug, Phenergan.    

This is great but, combined with her other drugs, Phenergan has as risk of putting her into tremors such as those in Parkinson’s disease.  If not treated rapidly they could become permanent.  Treatment is an injection of Benadryl or Epinephrine as in an anaphylactic shock.  Those drugs are in the top flip top container of her 5 drawer medicine kit (tackle box) with dosages and everything written out in big bold letters.

Because of the way the drugs all interact, we have to be on very strict 4 hour schedules.  Some drugs being given every 4, some every 8 and some on the odd schedules to the others.  Talk about trying to figure it all out – ugh!  Have you noticed that “ugh!” is a favorite expression?  Maybe its just what we are going through, I don’t know.

On another note, Maggie takes off for Disneyland tomorrow.  It is going to be a long trip for her but, if bathed in prayer, she should be able to have enough energy to see it through.  Rebekah (and mommy) got to see Maggie, her mom and dad at clinic today.  They were very grateful for all of your continued prayers – as are we.  

A Short Update

Rebekah was up several times during the night and needed her sheets and/or her pillow cases changed a couple of times.  She and mommy took off to the hospital at 5am for radiation.  All went well except that Rebekah is taking longer and longer to come out of her anesthesia and it is becoming more and more difficult on her; she is fighting a lot more.

They then waited around for the oncology clinic to open so she could have her doctor’s visit and blood tests.  Her blood work came back okay which means she does not need a transfusion today which is really relieving.  We are not sure whether she is still on the way down or actually on the way back up (holidays mess up everything like frequent testing).  Hopefully she is on the way back up and won’t need any transfusions this week.  

Tomorrow she starts “high intensity” or “boosted” radiation to the core tumor areas.  This will be a lot higher dosage but more confined.  We are not sure how she will react to this.  It might be better or it might be worse.  Only time will tell.  Please keep up the prayers for her.

THANK YOU to Amanda for being here today to help with Sarah – what a Godsend she is.  We have missed having her around while she took some “time off” for a mission trip to Romania.  

And yes, for those of you who have gotten VERY good at reading between the lines, I am purposely avoiding how daddy is feeling today.

Pure Daddy

This is daddy – pure daddy.  I don’t know if I can put the last hour and half into words.  We have spent the entire weekend working around the house and nothing we have done has drained me like I am drained right now.

Rebekah has been insisting on having a drink with her at all times even though she has not drank in weeks.  When Sarah came running by, Rebekah signed to Sarah that she wanted Sarah to take a drink from her.  We ended up with Sarah in Rebekah’s arms on the couch with Rebekah holding the sippy cup of juice while Sarah drank.  I thought I was in heaven watching these two girls share.  Then I looked at Rebekah’s face and there were tears flowing from her eyes.  I absolutely thought I would loose it.

I asked Sarah if she wanted more and Rebekah whispered in her faint voice, “more”.  When Sarah did not respond Rebekah signed “more”.  When Sarah still did not respond Rebekah picked up Sarah’s hands and moved them into position together, apart and then together again,  helping her make the sign for “more”.    Sarah drank and Rebekah clapped and signed “drink” with tears flowing from her eyes.  

Shortly thereafter mommy took Sarah over to the kitchen table to eat.  Not 30 seconds after they were gone Rebekah said she wanted to eat but what she really wanted was to help Sarah eat.  I asked her if she wanted mommy to come get her and she said no, “da da”.  She let me pick her up and carry her to the kitchen where she sat in my lap next to Sarah in the high chair.  She proceeded to insist that she and daddy together feed Sarah.  Mommy couldn’t do it, only daddy and Rebekah.  She continued helping Sarah sign “more” and also tried to teach her “eat”.  She was very adamant that we understood SHE was doing it.  All the while tears flowed from her eyes.  Finally, after Sarah was done Rebekah washed Sarah’s hands and face and then sat and hugged me tightly.

This was SO special to me because it has been more than a month since I have been allowed to touch her, to pick her up, to even be close to her and here she was holding me tight and crying in my arms.  

There is more to tell but I am hoping you get the idea.  What makes this even more emotional for me is that she is not getting better and seems to have back tracked today.  She slept ALL DAY and until these moments had been either in bed or on the couch with very little interaction with anyone, even mommy.  Her food is staying down at a very slow rate, but she is not well.  The radiation is getting to her again and the burns are starting to appear.  There is a constant trickle of blood out of her mouth or nose.  Her left eye is, well “lazy” and glazed over.  

I don’t know any other way to describe it except that she just doesn’t feel right.  This sudden out pouring of affection has me extremely scared.  I cannot stop crying.  Please pray for us.

Lots of Things Done Today

Rebekah is doing better bit by bit. She threw up pretty bad this morning but has, since then, kept everything down. Her "food" is being quite diluted and put in at a slow rate, but she is keeping it down. We are so THANKFUL!

There were a few times (far better than one or two) today that Rebekah was wanting to play with Sarah. Play ususally consisted of having Sarah climb on her. A couple of times Rebekah even insisted that she be the one to give Sarah a piece of food or a sippy cup. We had to bring the food or sippy cup to Rebekah and then coax Sarah over there, but it worked.

Sarah pretty much thinks Rebekah is a jungle gym and Rebekah, for the most part likes it. Good thing since she is too weak to do anything about it.

Between yesterday and today we had SO many helpers - so much that we have been brought to tears just thinking about how gracious so many people have been.

Annika showed up this morning early to help paint. Help is kind of an underestimate because it is kind of her project. She even brought the paint. Then she brought her neighbors Nolan, Catherine, Ryne and Meredith who all painted. Ryne and Meredith spent a bit more time outside on the play structure but helped inside every chance they got. Catherine is a twin sister to Rebekah - only about 20 some years older. She is fighting cancer, in chemo and bald just like Rebekah. They all WERE complete strangers until Annika read about Rebekah's story in the newsletter to NAFA (Northwest Adoptive Families Association - a group of adoptive families that we belong to). It was SO cool to have them come out.

Grandma M also came out and helped watch the girls. Ashley from church came and took care of some things around the house that were falling way behind. Then Karen, Dave and Ian came over. Karen is a nurse and we specifically called to see if she would come over and watch Rebekah so mommy and daddy could go - TOGETHER! - to Home Depot and pick out a ceiling fan for the playroom. It was nice to be able to get out together. While Grandma and Karen watched Rebekah and Sarah, Dave and Ian continued on the trim on the outside of the house. Rebekah only fussed once and they were able to calm her down.

Mommy and daddy got a ceiling fan, some lights and some shelving for the "pharmacy". Most of you have family bathrooms. We used to. Now we have a family pharmacy:

(Just for "perspective" these shelves are 5 feet wide and 16 inches deep) And this doesn't count the medicines in the fridge, the IV supplies in her room or the cases of "Food" for her G-Tube. This stuff had been spread throughout the house and we really needed to get it together. Not exactly "attractive" for the family bathroom, but you do what you have to do.

Thank you so much for all the help, for all the prayers and for just thinking about us. Right now we are on pretty much a high with all the progress being made around here. Aren't holiday weekends grand?!

Another Morning

Another Morning.  Last night was very long.  We, okay most of the time it was mommy, were/was up many times.  Rebekah continues to not tolerate food for a continued period.  We are on short bursts beginning and ending with lots of anti-nausea medicine.  

Yesterday she slept most of the day.  Frustrating was that she would be doing just fine while she was sleeping and then wake up, almost like she was startled awake.  She would then be screaming and thrashing around until she would go back to sleep in mommy’s arms.  

We have now had our dear baby Sarah back for a couple of days and are very thankful that Sarah is at least sleeping through the night.  

Yesterday Katie came and did laundry.  Heather brought shopping stuff.  Grandma A came much of the day to help baby sit.  Grandma M brought dinner.  And Brad and Dinah came along (brought) Grandma M and then helped to put up some more trim on the outside of the house that we started back in the beginning of August.  It was SO MUCH help and we are SO thankful.  The only question we have, however, is with all that help why do we feel so tired?

Please pray specifically for our continued strength, finances and for some needs in our internet access. With regard to the internet access we have asked for some help from one of our few choices for high speed access which, after being at the hospital and now home, I have realized is necessary to keep the pictures coming.  I can’t edit those pages on my slow lines at home and when we are keeping those up to date we get LOTS of hits and support!

Rebekah and Maggie

Rebekah still continues to be sick to her stomach, but reducing the flow of her feeding and diluting the “food” seems to have helped a bit.  We are SO trying to avoid a trip back to the hospital.  

Maggie continues to be so much on our hearts.  PLEASE continue to lift her family up in prayer.  I cannot say it better than her most recent journal entry from yesterday, Friday:
Today was a very long day in the life of Maggie. It started with a trip to the clinic at Emanuel where she received blood platelettes and red blood cells(which give her energy!). Maggie was happy to see Dr. Norwood and Dr. Olsen. Her blood tests revealed that her leukemia is spreading rapidly. This was not good news. After discussion with Maggie's doctor, Beth and Rick decided to continue with their plans for Disneyland next week. Maggie will visit the hospital next Tuesday where she will receive blood, fluids, etc. to help pump up her energy level for the big trip.

Rebekah Please Get Better

Rebekah does not seem to be getting much better.  She is still sick to her stomach and starting the feeding again hasn’t been possible.  Not sure what is going to happen in the next few hours.  

In our minds we know we should be calling to doctor which means they will probably say we should bring her in.  In our hearts we don’t want that to happen.

3am Update

3am – just to accent the time.  Rebekah is not tolerating her feedings very well.  We started to see some concerns about 8 last night and took her off the feedings for a few hours and thought she was doing better and reconnected her before going to bed.  

Now we have seen what her “food” looks like after we’ve put it into her tummy.  Funny thing is that it doesn’t look that much different.  The joys of eating through a tube.  Rebekah threw up most of everything she had taken in since we re-started the pump and we are up now doing another load of laundry.  

Mommy holding Rebekah, Daddy changing sheets.  We have the feeling this might become routine – let’s hope not.  

Made It Through Another Day

Rebekah has made it through another day, or most of the way through it anyway.  Mommy and daddy are a bit frazzled, but…

Rebekah has continued to improve throughout the day which is SO much an answer to prayer.  In fact, tonight we actually saw something that has been gone for so long, our little girl’s smile:




She just was having a ball playing with daddy’s slippers.   (Notice her feeding tube just above her arm on her belly). She even asked us to take her over and sit in a chair at the table next to where Sarah was eating.  This was completely awesome.  I want to upload so many pictures but I can’t as our internet service here at home is just too slow.  I TRULY apologize to those of you on dialup for the picture timeline at www.HelpRebekah.com – I did not realize how slow it was!

We were able to take a step in the right direction with one of the medical providers – the one that has sent everything to collections already!  They sent us a financial aid application and said they would mark the accounts as current pending that application.  Still a lot of legal dealings to handle the collections, but I guess that is a part of this process too – THAT SUCKS!  I am sorry for the language for those of you who have little kids reading.  

I do want to draw special attention to the person that we don’t even know who gave us $200.00 on paypal.  THANK YOU THANK YOU THANK YOU.  Right now that is huge to us.  It is our 20% of a basic night in the hospital – thank you again.  I would print your name but the way you filled things out leads me to believe you really don’t want to be known.

Our hearts are really on Maggie today.  Please check out her site at www.CureMaggie.com and if you know anyway or anyone who knows any way to get in touch with Rod Stewart, please do so for Maggie!  

Have a good night, hopefully we can see some positive things in the morning.

Friday Morning (or is it night time?)

Radiation went okay today and mommy and Rebekah were home at about 8:30.  It was a long night before that.  Shots and meds at 9pm.  G-tube shut off at midnight.  Shots and meds at 4am.  Up and out the door at 5am.  

Now that we are home, Rebekah is being very needy (as you can imagine).  She has some very particular ideas about who can do what for her.  Its not just that she wants cold water.  Its that daddy has to get the water but mommy has to give it to her.  If the wrong person turns out the light she throws a fit.  If she is in bed she wants to be on the couch and vice-versa. Etc.  And of course, there is no uniformity to her desires so we have to guess and are usually guessing wrong.

We fully understand that she is going through so much and are giving her SO much grace no matter how much it is wearing on us.  Somewhere soon, however, we are afraid that she is going to start “calling the shots” just because she can and then it will all end.  

As you can see and/or imagine, we are not getting much sleep and no rest.  We welcome a routine here and look forward to settling into one.  In the meantime, however ?!?!?!?!?

Thank you all for being there, for supporting those who have donated and supported us, and for encouraging the business that you know to help wherever possible.  You may recall that Pepper’s Mexican Restaurant in Hillsboro, Oregon had a fund raiser for us – giving a percentage of their total intake over a 4 day period last week.  They presented us with a check for $870.00 to go into Rebekah’s Trust.  That was awesome, but even more awesome was the fact that they were packed from Thursday through Sunday with people who were there saying they wanted to support Rebekah.  People even called them (those of you that were too far away to come?) to thank and ask about the support.  The support we have received really keeps us going in so many ways.  

Please continue to pray for our strength as well as for Maggie, Josh, (links for both on the right side here), Gage and the other children suffering greatly with this dreaded disease.

Home at Last - and tired

And it seemed to take forever to get here. We finally got Rebekah into the house after 6pm and have just started to get her supplies unloaded.

She is on G-Tube feeding 18 hours a day which is one pump and a set of tubes. Every 8 hours she gets antibiotics which is a single syringe put into another pump and set of tubes for a 25 minute period.

Here is a picture of Rebekah on the couch at home (with her new playroom in the background. I apologize for the haze, it seems Rebekah has managed to get something on the camera lens.

This is more difficult than we expected.

More SNAFU than usual.

There is always confusion and snafu, but this is bugging us more than others.

We are still at the hospital, or more accurately mommy and Rebekah are. We were ready to be discharged before noon. All the papers were signed and everything packed and ready to be out the door.

Then we ran into problems with scheduling “home health care”. It seems they did not have “Time” to come to our “home” and have forced us to wait around 3 ½ more hours so they can come see us in the hospital. 3 ½ more hours is not a lot more time in the grand scheme of things but after being here for 11 days now WE WANT OUT!

Cautiously Optimistic

We are optimistic about going home.  In fact, we are so optimistic that late late last night daddy packed up the trailer and headed home leaving mommy and Rebekah alone at the hospital.  Daddy has a couple of appointments today at the office that he has to be at and it didn’t seem to make sense to leave the trailer and then have to go back and get it.  Now we have to really cross our fingers that things stay well towards going home.  

Rebekah has not had a fever in 24 hours and went through anesthesia and radiation pretty well this morning.  She did not need oxygen as long as she has the past few days.  They are still saying that she will not be able to go home right after radiation for a few more days and will have to stay a few hours in recovery “just to make sure”.  

It is difficult coming home after 11 days gone from the house and office.  Thank goodness the weeds need water to grown and have not done so too much.  It was REALLY REALLY nice to come home to a very clean and organized house.  Thank you Robyn and family.  In addition the drywalling was all done and the play room is ready for painting.  And on that same note we received a phone call from one of Maggie’s supporters who has offered to help with carpet.  Prayers are being answered.

The downside of coming home is arriving to a stack of bills, bills and more bills – including letters from debt collectors on accounts that we are still working with the billing offices of the doctor’s etc. to get the insurance requests right.  On one had they are turning things over to a bill collector and on the other hand they are acknowledging that they have not billed the insurance correctly.  Ugh.  

We are afraid as to what it is going to take to care for Rebekah at home.  Please pray for peace, ability and help.  Thanks.