Thursday Late

There doesn't seem to be much to report for today. We've been blessed with a number of visitors, so it kept the day moving. I'm not going to mention everyone, because I would probably forget some. I will say that Addison came by for a little visit. She's out of Pediatric ICU and into a regular pediatric room. She seems to be doing very well. That is a great news.

Rebekah didn't want to eat much today, which we have come to expect. Her appetite will go down and it will come back up. We encourage eating as much as possible and offer a variety of choices. It is always hard to guess at what she will eat. One day she eat one thing only and the next day she won't touch it.

While we've been in the hospital, she has seen a Physical Therapist, Speech Therapists and Occupational Therapists. It is great to have some therapy while we are here for a couple of reasons - it helps her work on her skills and it gives her something to do.

We couldn't get Rebekah to take a nap today, although she did rest a couple of times. She was a little cranky, but it could have been much worse. Sarah took several short naps, but no normal nap.

We continue to be amazed by the news of Rebekah's tumor being "gone". It is truly incredible news. Please continue to pray as we meet with doctors tomorrow. Most of the morning is packed with appointments. Please pray for Karen and Grandma A who will be watching both girls while we traverse the appointments.

A Prophetess Among Us

We want to make a mid afternoon update here to draw your attention to a line out of one of the comments we have recently received:

"Olivia says, "Mommy, I am so glad that Jesus took away Rebekah's booboo - now she won't have to have any more 'pop drops'." 'pop drops' is her term for medicine ---perhaps she speaks prophetically!"

This brought both Frances and I to tears. If you have been reading the blog and comments from the beginning you will know that several times Olivia (a little girl who lives 3,000 miles away and has never met Rebekah)has had knowledge of a very specific need of Rebekah's and prayed out loud specifically for them before she (or her mommy) had read or even before we knew of the need. God has blessed this little girl with keen insight and that makes the above even more powerful to read.

Rebekah is doing okay today although she has not wanted to eat much. There was a short time where she was eating some of her sister's baby food off the stroller tray but that has been about it.

Tomorrow morning we are meeting with SO many doctors to talk about the future and we are confused, nervous, upset, apprehesive etc. etc. etc. about it. Please keep us in mind.

Joyful in light of more trials...

We continue to be delighted in the miracles that prayer has worked with Rebekah. It was never even a part of the discussion that the cancer could be "Gone".

What amazes, delights, blesses (I don't know exactly what word I am looking for) is that this is all a part of God's plan. He is in control and continue to bless others through Rebekah. We don't know why we are here or going through this but we pray that, at least in some small way, it is to help others.

Yesterday the blog itself saw the highest ever hits in one day - more than a 50% increase from any other. I have no doubt that God is drawing those people to the last couple of days entries to see what miracles He has done. The comments make it clear that He is touching others through this. Some may try and discount the faith component of this, but a true honest reading of all that has gone on has no room for believing God did not have something to do with this.

We were talking about faith yesterday with Keith. I am not sure why Keith felt he needed to share about faith with us because we very much have faith, at least we think we do. But what he said was that many believe faith is believing in the things that there is no evidence to support but that is not true. Faith is taking the evidence that is there, seeing where it points you and believing in where that ends up even though you might not have evidence currently in front of you for every step of the way. There is LOTS of evidence that things with Rebekah have not gone according to the world's way. There is LOTS of evidence that people have been praying to God for a miracle. There is LOTS of evidence that a miracle has taken place. Faith is putting those steps together which doesn't seem to hard to accept at this point.

Still Confused and Frustrated

We don't know anything for certain yet, but we are scheduled to have a conference with the two oncology doctors, case manager and Scott and I on Friday morning and also scheduled to meet with the Radiation doctor on Friday morning as well. We are frustrated that we are getting a different treatment plan now than when we first consulted with the oncology department.

Until this week, we understood that at this point in the process we would be doing a second round of scans (which are in process) and based upon these scans a determination would be made about Surgery and/or Radiation. Further understanding was that if part or all of the tumor could be removed by Surgery it would be and if it couldn't ALL be removed THEN we would need Radiation for the remaining portion.

While the news of the tumor being "gone" is absolutely fabulous, it is so overshadowed by the devastating news of needing Radiation.

On a different note, Addison (some friends' daughter) had open heart surgery today (at the same hospital where we are) and that went very well. Addison (who is around 6 years old, I'm not quite sure her exact age) was awake and talking and trying to sit up this afternoon. She has had a hole in her heart since she was born and the surgeon was going to take care of that as well as a couple of other things. Mom (Jessica) explained it to us, but I can't remember the exact details. I talked with Grandma and Grandpa for a little while this afternoon and Scott talked with Mom this evening. All seemed to be going very well. Please keep Addison and her parents (Jon and Jessica) in your prayers, too. She'll be in the Pediatric Intensive Care Unit for a day or so and then in one of the pediatric wards for another few days.

Back to our saga... The doctor we originally consulted with has left the clinic (to move back home and into a bigger clinic). The doctors have always shared patients, so we have worked with the remaining two doctors, but they were not involved in the initial conversations.

The doctor who is working with us this week, while we're in the hospital, explained to us yesterday that the tumor is "gone" and there is nothing to surgically remove, but we still need radiation. This was (and still is) quite a shock to us. He has indicated that with the type of cancer that Rebekah has, Radiation should be considered reqiuired. It is not at all what we understood, so we are reeling from the news. We're trying to understand the reasons why and having difficulty getting sufficient answers. We will probably have to wait until Friday to get our questions answered. Meanwhile we stew about it.

The more we learn about Radiation, the more it scares us. This is why we wanted to avoid it. Here are some of the ways that it would affect Rebekah. Be warned, I'm going to be specific. We've always been pretty open about what's happening and this is simnply more of that. Radiation kills any cells that it hits - good and bad.

Because Rebekah's tumor was on only one side of her jaw, they would only Radiate that one side. Therefore, one side of her jaw will continue to grow normally and the other side won't. Because of her age and the amount of growing she has left to do, she would need at least one surgery (if not more) to artificially lengthen her jaw on the left side.

The gland that creates saliva would be destroyed, so the teeth cleaning that saliva does naturally wouldn't be done and extremely good dental hygiene will be required.

Her adult teeth might never come in.

The muscles in her jaw could tighten and make it difficult to open her jaw, making it difficult to eat (and presumably speak). Therefore she might need a feeding tube, either thru her nose or surgically inserted into her stomach. She could need therapy to assist her with exercising the muscle and getting it to function better for her.

In order to give her Radiation, they will need to sedate her and strap her down to keep her from moving at all using a mask that will need to be created for her. It is anticipated to be a month of Radiation appointments every Monday thru Friday, so that is a whole lot of anesthesias as well as a lot of travel.

Many of these are life-long issues and really scary for the parents of a 3 and a half year old. Please pray that we are able to have a good meeting with the doctors on Friday and get our questions answered adequately. I don't know what all to ask for in prayer - doctor's wisdom, our own understanding, the decisions that need to be made, for Scott and I to have peace about our decisions, etc...

MIRACLE of all Miracles

What we have been afraid to even ask outloud for has been granted. Rebekah's tumor is "gone". According to todays meeting with the surgeons, oncologists, radiologists, etc. the tumor is "gone" and there is nothing left to remove or operate on. Only God can do such a thing.

You may have noticed that "gone" is in quotes and that is for reason. There seems to be very different meanings of that word and we are quite confused right now. Unfortunately not all of the meanings seem to mean "nothing is there and we are as good as if it never happened". The confusion that we are experiencing seems to stem from different views/perspectives/? from different doctors. There is a "gone" but we still have to do more chemo and radiation theme. If you are asking "what is there to radiate if the tumor is really gone?" then you are in the same boat as us. We have not been able to get a direct answer to that question - yet. Please pray for direction and peace as to what this all really means. Unfortunately it is clouding the elation of pure joy associated with the tumor being "gone".

Rebekah had more body and bone scans today. Presumably to make sure the tumor has not spread (moved?) to another part of her body. We lost her (as in could not find her) for a short while during this process and that was a bit frustrating. Hopefully we will know the results of some of these tests tomorrow. We will still have to do a PET scan next week.

Please pray for the continued good news in the scans that were today and a clean bill of health for her. With God it is possible. More updates to try and clear up the confusion (if you are confused right now imagine what we are feeling) will come just as soon as we know something and can get them up.

Tuesday - SCAN Day

Last night was almost tolerable in the trailer. Sarah did not want to sleep or stay in the playpen or lay in mommys or daddys arms or... well, anything except scream and cry. We made it through however.

When we got to Rebekah's room at 7:30 this morning we found out that they have scheduled her CT scan and Bone scan for 3:30 this afternoon. They tried to tell us that she was not allowed to have anything to eat today (even at 7:30am)before the scan. We had some discussion and she got breakfast.

The rule has always been 6 hours before and there was no way in the world this little girl was going to have to go all day without eating just so she might not get sick during anesthesia and make life difficult for the anesthesiologist. Actually there is a bit more to not eating that making life easy, it can be down right dangers to have an upset tummy with food in it while you are under sedation BUT Rebekah has never had a problem with an upset tummy during anesthesia and we were not just going to make her wait all day to eat.

We got word that cousin Karen made it on her plane and should be here late morning - Halleluia!

If this works right I am enclosing a picture we took yesterday as we started chemo. Sorry, the palm camera has no flash and it is blurry but it does give you an idea of the room and what kind of "garb" has to be worn when dealing with the chemo. Thanks to nurse Lisa for posing for us!

At the Hospital Update

Rebekah's counts were acceptable for treatment today, but just barely. There was some question this morning as to whether we were going to proceed because the manual ANC count wasn't quite high enough, but the automated ANC count was sufficient and the rest of the counts all looked fine. After discussing it with the doctor, we went ahead with it. We got into her room about 11:30 this morning and started on fluids, since they really want about 6 hours of fluids before starting chemo. Chemo was started just about 5:30pm.

This round of chemo is two drugs that each run for an hour one after the other each day for five days. When the second drug starts, they also start her on the bladder protectant medication that runs 8-10 hours (I don't remember the exact length). So, for much of the day, she is not receiving chemo - which gives her a little more freedom.

When we first got into the room and before they had the IV fluids going, Rebekah wanted to go for a walk. She decided that she wanted to push her IV Pole around the ward. Keep in mind, she was not connected to the IV pole and she didn't need to take it with her, but she wanted to. So we went for a walk, IV Pole and all. Probably looked pretty funny to anyone looking on. Not that Rebekah cared a bit!

We learned that they want to get a bone scan, cat scan and panoramic xray while we are here this week, as well as the pet scan next week. She was able to get the panoramic xray today and the bone scan and cat scan are currently scheduled for tomorrow morning (provided that we can get the sedation scheduled in the morning - they had already left for the day). So Rebekah doesn't get to eat, until we hear something about the scans.

Grandma A had Sarah most of the day and Sarah seemed to do well. Grandma A is now in the room with Rebekah. She came with some treats for Rebekah, including grapes and string cheese - which Rebekah seemed to enjoy. Since she didn't eat much of dinner, it was great to get her to eat a little something more.

Sarah, Mom and Dad are in the trailer tonight. Sarah is not wanting to go to sleep. I don't think Rebekah wanted to be going to sleep either a little earlier this evening. Oh the life of a child - there are always too many other things to do than go to sleep.

Please continue to pray that the scans go well, that the meeting with the surgeon and oncologists goes well tomorrow and we are able to find out how they want to proceed, that Karen is able to get onto her flights and make it here safely, and that we all have a good week. All the thoughts and prayers are greatly appreciated.

An Early Morning Update

Rebekah was doing really well through the weekend until last night. Her diaper rash is back and she needed changed a couple of times right at bedtime. She threw a continuous tantrum which was really strange as Grandma A was here and Rebekah is usually pretty good amongst Grandmas. She was clearly hurting.

This morning we are meeting Grandma A just off the highway on the way to the hospital. She is going to take Sarah for the day (while we get checked in and situated) and then meet up with us around dinner time and spend the night with Rebekah in the hospital. That way each of the girls will get some “Grandma time.”

I don’t think either mommy or daddy slept very well last night. It was after midnight as we got to bed and now 5:30 and we are up. The trailer is already connected to the van and pretty much all packed. You would think by the number of times that we have made this trip in the last 3 months that we would have this down – but we don’t totally. I do have to admit, however, that having a day to get things packed is a whole lot easier than when she spikes a fever and we have to go NOW.

Please continue to pray for good (miraculous) results of last Thursday’s MRI and for good results of the CT Scan that will happen sometime this week. Also for patience (for all of us) and a successful long week at the hospital. 6 days would be short but possible, 7 expected and, well, let’s pray for no longer.

A day without an update...

...and you all keep coming back to check. We are sorry. Yesterday was a long day as daddy was out of the house most of the day working and mommy was home alone with the girls.

Rebekah is just not being a happy camper. It is really hard to tell how much is not feeling well and how much just being 3. She is throwing temper tantrums trying to get her way (it doesnt work) and just generally not being as nice as mommy and daddy would like her to be. Normally she is this bad in the hospital but not this bad at home - that makes us really nervous about this coming up long stay in the hospital.

We will be going in on Monday morning and expecting to stay 7 days. During that time Rebekah will be getting chemo as well as having some other diagnostic tests done to try and determine how the tumor has been reacting to the chemo. There will at least be a CT scan but we are not sure about anything else. We are cautiously optimistic, not because of any hope the doctors have given us but because of all of the prayer support. Please be thinking about us extra hard this week.

We also want to very much thank those of you who have been to www.helprebekah.com recently and have either donated to Rebekah's trust or helped in other ways the last couple of weeks. The generosity of friends and strangers a like continues to bring tears to our eyes. THANK YOU!

MRI Today

We know a lot of you are waiting so we thought we would get a quick update here even though we are kind of beat from a long day.

The MRI went uneventful. Rebekah went out under the general anesthetic well and an hour and 15 minutes later she was out of the MRI and in recovery. It took her another 2 hours or so to wake up. She did not have any of the screaming and terror that we have seen in her coming out of anesthetic in the past for which we are very thankful.

We will not have any real results of the MRI until next Tuesday's meeting with the surgeons and all of the oncology staff. We might get a preliminary assessment before then but are not sure. Basically this MRI will not tell us much of anything until they can compare it side by side / on top of the ones taken 11 weeks ago. They need to measure and see exactly what has grown, what has shrunk, etc.

In some ways this is difficult to wait for, but in other ways it is great because it gives us more time to pray for another miracle. It would be really great to have them call tomorrow and say "we are looking at the MRI and can't find anything..." It can happen.

In another praise Frances' cousin Karen is going to get to come from Ohio next week to visit/help. She has some standby tickets for Tuesday so please keep her in mind and pray for a good seat and the ability to get all the way through to Portland.

We are tired, but it is a good tired. Thank you all.

God is Good

Rebekah's diaper rash is just about gone. It disappeared over night. Based upon past experience there would have been no way that would have happened that quickly. Can we say God?

Rebekah's tumor seems as though it is more defined and protruding a little more than before, but right along the jaw line. It seems as though it changed over night Monday night. I'm going to believe (unless I'm otherwise informed) that this is God's work making it easily removed by surgery in preparation for the MRI tomorrow.

Rebekah's attitude still needs work. She has been screaming off and on much of the day, for no real apparent reason. She gets a little booboo and just wails. It is really frustrating for mom and dad, especially when we're not feeling up to par.

The girls have been sleeping pretty well, but I (mom) haven't been able to. I go to bed and my brain just works overtime. I toss and turn most of the night, dozing on and off. I've never been able to take sleeping pills (or they've never worked for me and only made matters worse). So, I'm getting pretty tired (as if I wasn't tired before) or perhaps more correctly stated - exhausted.

Well, tomorrow is another adventure. Please pray that it goes well. We'll have to wake Rebekah up so that she can have some breakfast and be done with it by about 7am. Then she can't have any food until after the MRI and only clear liquids until 11am. It makes for a "fun" day. Grandma M has offered to watch Sarah while we take Rebekah in, so that is a big help. (Both Grandma M and Grandma A are school teachers and off for the summer. Yeah! for them and us!) Pray that Sarah cooperates for Grandma and will take the formula well so that Grandma stays sane.

Prayer works! Thanks to all of you who are offering prayer for us! God Bless each of you!

Mostly a good day

It has been a pretty good day. Rebekah has been doing reasonably well. Her appetite is coming back, although finding the "right" foods to get her to eat is tough. Yesterday, the doctor mentioned that she wanted to keep an eye on Rebekah's weight. The general guideline is that when kids have lost more than 10% of their weight, they want to start treating the weight loss as well. When Rebekah was first in to see the oncologist (when we were first diagnosed), her weight was 16 kilos, so if she gets below 14.4 kilos we need to consider treating the weight loss. Last Thursday, her weight was 14.8 (so it was getting close). Her weight yesterday was up to 15.5 (we checked it after seeing doc).

The antibiotics have given her diarrhea, once again, and now she has a diaper rash. It is not as bad as the last time, but it is definitely sore and irritating. Rebekah is not happy about it. The diarrhea is getting better, but unfortunately the rash is getting a little worse. Rebekah had been doing really well at telling me when she needed a change and the rash had stayed away. Yesterday, when we were out at the doctor's office and the routine was different, she wasn't changed as rapidly and the rash started. Uugh!

Her attitude can still use some correcting. I think some of it is her wanting to control something, since there is so much that she can't control right now. We try not to let her get away with it. I'll give her a little more grace than normal because I know she's having a rough time. I don't want her turning into a spoiled brat.

As we said yesterday, Rebekah is scheduled for an MRI on Thursday. The MRI is really the best test for seeing how the tumor has shrunk in order to determine what can be done through surgery and if radiation will be required. In addition, they will want to do a Cat Scan of the chest to confirm that there is no spread of the cancer to her chest (which they really don't expect since it wasn't there in the chest before). The Cat Scan should happen while we are in the hospital next week. They will also want a Pet Scan of the head, so that they can see which of the cancer cells are dead and which are alive. Since this test has to be done at a different hospital, it will be probably done the week following chemo. This test is really more of a "confirmation" test and likely won't change the surgery/radiation approach.

Please pray that the tumor can be completely removed surgically so that no radiation is required, that the Cat Scan comes up clear (and the cancer hasn't spread), that the Pet Scan shows ALL the cells are dead, that her diaper rash goes away, that her appetite continues to increase, that her attitude improves and that we all have a good week. Praise God that Rebekah is gaining weight and has some of her spunk back, that we are keeping some sanity, that Sarah is a content little girl and handles most of the ups and downs with us pretty well and that we know that He is in control of the situation.

I wanted to share a little story with you. Earlier today, I was right in the middle of something and Sarah was crying and I couldn't get to her easily. Rebekah was watching me and I asked her to go tell Sarah that Mommy would be there soon. Rebekah ran to Sarah and I could hear her saying "ChiChi, ChiChi, Mama, Mama" (she calls Sarah ChiChi). Sarah quieted down and I could hear Rebekah squealing and having fun and she seemed to keep Sarah content for several minutes. I am amazed some days at how much Rebekah understands. Her verbal skills are not great, but in her way she was telling Sarah that Mommy would be there soon (and more clearly than I expected). Sarah seemed to understand. It just warmed my heart to hear them. God is good! Kids are a miracle.

Update and Prayer Request

Rebekah had an 11:00 appointment today and things are going "okay".

She is scheduled for an MRI this Thursday, the 23rd. It is this MRI that will tell us what effect the prayer (and chemo) have had on the tumor and whether it can be operated on in the next couple of weeks. There is a meeting with the surgeon next week. After the MRI on Thursday we go in Monday (a week from today) for 7 more days of chemo. After that week we go to another hospital (Providence Portland) for another PET scan that will refine what the MRI tells us.

Please pray for a tumor that has miraculously shrunk to where it is now operable or even gone altogether!

Happy Father's Day

I am sorry to all of you who have checked in over the weekend and not had an update. We have not been sitting at the computer much this weekend.

Rebekah is doing a little bit better. She is eating some things but not a lot. Chem messes with your taste buds and things that used to taste good don't now and vice-versa. She is bruising quite a bit - like if you just bump into her or she bumps into the corner of the couch. I feel bad because this little girl looks like she has been through a 10 round fight just by walking around the house.

Overall I cannot imagine a better father's day than to have both of my little girls running around and happy. Grandma A and Grandma M both came over today and played with the girls and Grandma A brought a father's day meal that was delicious.

After dinner Rebekah went to her own "tool box" that keeps her medicines and, with some help opening it, got out all of the medicines and syringes that she needed to give her tubes "a drink." When I asked her if we should use "this" and pulled out the syringes that give her a shot she was pretty certain that we didn't need to use it but the others (the needleless type) were "okay." She is one smart little girl.

We go in tomorrow or tuesday for more blood tests and to see how she is doing over all. After the scares of last week we are hoping for a boring week before we have to go back a week from tomorrow for scans, chemo, etc. in a 7 day + stay.

A Big Turn Around

The prayers have been working. And I am sure the blood transfusion and the continued injections don't seem to be hurting either. Rebekah has experienced a very positive turn around today. She has started eating and drinking and she has gained a lot of her color back.

We went to the hospital this afternoon for a general follow up on her transfusion yesterday and to just do a check up. They took blood and some of her counts have started to turnaround although they are not all back to normal. Her ANC which was at 100 (absolutely critical) is now back to 1100. She is able to have visitors (as long as they are not sick) this weekend!

This has been a particularly up and down week and we thank you for all of the support through calls, comments and financially that we continue to receive from all of you. We truly cannot imagine how any family could go through this "on their own."

Rebekah seems to be feeling at least a little better

It was another rough night, with not sleeping through. But the fever is just barely there (98.8 instead of 100.4) this morning. She has eaten a fair amount for breakfast over the last hour and is still sitting at the table and munching on apple jacks cereal. And she has drank a half a glass of juice. It is progress. She is still acting very clingy and spent some time this morning resting in mom's arms and resting in dad's arms, but that was before breakfast.

Sarah is sitting in her exersaucer and playing the "drop the binky on the floor and want mom to pick it up" game. Rebekah is making it very clear that mom needs to get Sarah her binky back. There she is looking after her sister.

It seems that the prayers, antibiotics and transfusion are working.

We go back to the doctor this afternoon for another dose of antibiotic and so the doctor can have a look at Rebekah.

We're all home

Finally about 10pm we made it home. Rebekah received her antibiotics and her red blood transfusion. She did ok with it. Today, she had a few spurts of about 10 minutes at a time where she was active and acting normal as if nothing was wrong. However, most of the day she wanted to just rest - mostly in mom's arms or lap (if possible). It was nice to get the lovin', but really breaks my heart to see her feeling so crummy. She really didn't eat or drink anything today. That has me a little concerned. I was finally able to get her to drink some of my water this evening.

Our friend Karen went with us to the hospital today and was a great help. Thanks so much! Karen could keep Sarah busy, so I could love on Rebekah. Or she could play with Rebekah while I fed Sarah or loved on her. It is always great to have a second adult to help out. It was a long day.

Grandma C stopped by for a little while to check in on us and give us a hand.

The low grade fever combined with the low counts are a concern. With low blood counts, she might not be able to fight an infection. The low hemoglobin can really cause the lethargic feeling and lack of energy. Some kids will spike a fever while receiving a transfusion, so we were a little concerned about that. The transfusion took 4 hours and they kept us for a half hour after the transfusion was complete to make sure that she wasn't getting a fever (at least not yet). We still need to keep a watch on her temperature and if it goes to high we'll be going back to the hospital.

Please pray that she will awaken in the morning feeling better and be willing to eat and especially drink tomorrow. I worry about her becoming dehydrated. Also, pray that she will have no fever. Thanks for all of the continued prayers. I'm sure that I'm probably rambling, so please forgive me. I wanted to make sure there was an update here for those of you who waiting on pins and needles. I'm exhausted both physically and emotionally. It has been one of those days.

Mid Afternoon Update

Thank you all for your diligent prayers and for waiting on pins and needles for an update. I, daddy, remained at home while the girls took off in an emergency to the hospital so I too have been waiting for an update.

Rebekah is receiving antibiotics and a transfusion of red blood cells as we speak (I type?). Her hemoglobin continued to drop and her ANC was at 100 (to quote an early explanation (normal is 1500-11,000)...anything below 500 requires caution and below 200 extreme caution. 100 is critical and she cannot be around any extra people because she just doesnt have the ability to fight off an infection. They are hoping that she will come home tonight but will have to go back in tomorrow for more tests and antibiotics. Frances said she does look better.

When I put Rebekah in the van to leave I was scared as she looked really bad. As I was trying to wrap up enough emergencies so that I can get to the hospital if necessary I heard a song on the radio that said "Sometimes He calms the storm, other times He calms the child." I was the child and needed calming and Rebekah the "storm". I am grateful that in this case, He calmed the storm. I don't know that I am calm but I am not so afraid. Thank you again for all of your support.

This is probably just as good as a time as any to say that a lot of people have commented on how difficult this BLOG can be to read at times with the ups and downs. We try and be pretty "open book" with our feelings and what we are going through and we are sorry if that is too bothersome for you sometimes. I do know, however, that there are others that are reading or will read this that are going through the same things and they need to know they are not alone. Notwithstanding all of the great support we have we do sometimes feel alone and if this helps someone else get by now or in the future that is what it is here for.

Thursday - on the way to the hospital; and an Adrian update

It is noon Thursday and we are on the way to the hospital (at least mommy and the two girls are - daddy will likely follow shortly). It seems that we have gone as long as we can without Rebekah getting better. She does not look or feel good - please pray for her.

On a bright note - Adrian is responding to our prayers (and probably to the medicine too) positively and is coming out of danger. Thank you.

Rebekah's Update and a Special Request

Rebekah has had a bad day. She barely ate anything and it is obvious that she is not feeling well. We believe that she has some mouth sores but she won't let us look. This evening (about 5 o'clock or so) she took a pillow off the couch and pulled out a little blanket and just laid down on the floor. She then asked mommy if she could lay on her lap and just fell asleep there on the couch. Please pray for nausea and sores to go away.

As she was laying down we took her temperature. She has a fever. She is right at/above/below/above (depends on how many times we take her temperature) the line where we are supposed to be going into the hospital. We are expecting that sometime this evening or tomorrow morning we will be back to the hospital for a 2-3 day stay due to her fever. Please pray for a lower temperature through the night and in the morning.

We do have a special request that does not relate specifically to Rebekah. We received a phone call this evening that began by us being asked to put this request on Rebekah's Page because there is a little boy that desperately needs prayer and they know that many people read this around the world and will pray for him. Amanda (the angel who has been helping us SO much) has a 6 day old nephew, Adrian. Adrian is in the Pediatric Intensive Care Unit with an extremely high bilirubin count due to a liver problem. He may be in need of a transfusion. He is in the same hospital where we may end up tomorrow so maybe we can pray with him and his parents Jeremy and Marie. Please pray with us for Adrian's healing.

Counts are Low, Borderline for Transfusion

Rebekah's counts are low - in particular her Hemoglobin was 7.6 (normal is 11.0-14.0) and her Platelet count was 80 x10'3 (normal is 140-440 x10'3). Also her ANC (the infection fighting white blood cell count) was 230 (normal is 1500-11,000). With the low ANC, we'll pretty much be staying home and keeping away from anyone who is sick. Anything below 500 requires caution and below 200 extreme caution. According to the doc, she was borderline for needing a transfusion today, but not necessary. We need to expect one on Friday, although her counts may be heading back up (in which case we wouldn't likely need the transfusion). Rebekah will continue to get the shots to help her counts rise.

Rebekah continues to not feel real well. I gave her one dose of the "magic mouthwash" this morning, because it seemed that she might have some sores. She did pretty well with spitting it out (and not swallowing it). I'm not sure how well coated we were able to get her mouth, but at least we were able to get some of it coated. When doc looked at her mouth, she thought there might be some sores, but wasn't quite sure. This afternoon she wanted to snuggle in mom's lap for quite a while. She goes back and forth a little between being energetic and having fun to being upset and crying inconsolably. Under normal circumstances I would consider giving her Tylenol to combat the crummy feeling (assuming that some of it is pain), but we are not able to give her any medicine that could mask a fever.

We could really use some help all day Friday - to go to the hospital with us and help take care of the girls (mainly Sarah) if a transfusion is necessary. If you are able and willing to share Friday with us please give us a call.

Please continue to pray for a turnaround on her blood counts and for no need for a transfusion on Friday. Like last time, the doctor's are telling us to expect it but we KNOW prayer can work miracles.

Tuesday Morning Update

This may show up twice - I tried posting by emailing to the blog which is supposed to work - but so far has not...

Yesterday was a long day as it is clear that Rebekah is beginning to feel sick "all over". She is just not being her happy cheerful self and that obviously rubs off on all of us. We are trying real hard (as is she) to keep up a smiling face and are getting through things, sometimes minutes at a time.

Today Rebekah, Sarah, mommy and a friend Katie have gone off to the hospital for blood tests. We are expecting that her counts are going to be dropping but will have to wait for results to see how much. Will try and post another update tonight with counts.

A Frustrating Day

Rebekah has been a pill most of the day. It seems to me that she is not feeling well. I'm not sure if it is her stomach or general pain or mouth sores or something else. She has not been listening to mom or dad and has spent quite a bit of time in "time out".

Sarah loves to be down and crawling around. She'll chase after her big sister. Unfortunately, Rebekah isn't always nice to her. She will push her, pull on her and kick her. We are trying to teach her that she needs to be gentle with Sarah, but she doesn't always listen and obey.

Rebekah is fighting her shot and her daily dose of heparin in her central line (to prevent clotting). I can't really blame her. In order to secure her central line, it is well taped up and needs untaped before we can give her the heparin and then re-taped. I wouldn't be thrilled with it either.

It has been a very trying day for me. It has been one of those days where my patience has been tested and tested and tested. I'm not feeling like a very good mom or wife for that matter. It seems as though many things have not worked out as I had hoped. I've found myself in tears many times throughout the day, just full of diappointment, frustration, inadequacy, fear, anger and isolation.

After putting Rebekah to bed, I had to get out of the house. So Sarah and I went to the grocery store. The only things that Rebekah has wanted to eat over the last couple of days were Cinnamon Life cereal (mostly with milk - which is new for her) and pretzels. We ran out of the cereal today and are nearly out of the pretzels, so those were a couple of things that I wanted to get. With Rebekah's counts dropping, and any infection being a real concern, I didn't want to take her out to the store (where germs abound) and chance it.

Here it is after midnight and Sarah just doesn't want to go to sleep. She won't eat or drink and won't quiet down in my arms, so for now she is crying in her crib. Every few minutes, I go in and check on her and see if I can get her calmed down to go to sleep, but so far no luck. So much for my getting to bed early tonight.

Rebekah is now sleeping in the big girl bed without bed rails. Just before going into the hospital this last time she got into the desitin and spread it all over everything in her room including the rails. I had to take them off and apart in order to get them cleaned and we thought it might be time for them to come down. She has done well with them being gone. This is just one more step towards growing up.

Rebekah's Ups and Downs

Today was a bit of a roller coaster day.

Again Rebekah slept in real late. She continues to not be feeling well. She will ask for something to eat and tell us specifically what she wants. Then when she gets it she throws a screaming fit and pushes it away. If she does start to eat something she will be going fine for awhile and then just push it away and start crying. It is pretty obvious that her tummy is bothering her.

Her attitude (temper tantrums) continue to get worse but that, again, we believe to be part of not feeling well. She is not "Getting away with" things, but it is hard to discipline her when we know she's not happy to begin with.

This evening we had soft taco's that Ginger brought to us yesterday. Rebekah ate LOTS. Lots of daddy's and lots of mommy's. She would not, however, eat what was on her plate. I think I had a total of three on my plate that Rebekah ate one of.

After dinner Rebekah and daddy went out to the barn to do some cleaning/organizing. Rebekah likes the barn and she played out there for quite awhile. She found her little pink motorcycle "burried" in a corner and wanted to sit on it. I don't know if she will ever actually ride it but she loves to sit on it and she knows it is hers.

After quite a bit of time in the barn she wanted to go run around the yard. She headed straight to her playset but, like yesterday, she would not swing too much. About 3 minutes and she was saying and signing "all done." Her tummy maybe? She then wanted to go inside.

Just before bed time we had to change the connectors (hubs) on her central line and give her a shot. She did okay with the shot but is not at all happy about having to pull off all the tape each time. It was much nice when her tubes just hung free and all we had to do was clean them to maintain them but we just can't take a chance of these pulling out again. I feel bad for hurting her by pulling off tape and putting more on, but...

Thank you for your prayers and support. Please don't forget about us as we are still just at the beginning of this.

Friday - Almost Normal and Thank You's!

Today was an almost normal day. And for that we are very thankful.

Rebekah did not sleep that well last night. It is pretty clear that she is not feeling very good over all though when asked if she has any "owies" anywhere she consistently says "no". She ended up sleeping in quite late this morning and also taking a pretty long nap this afternoon. It is pretty obvious that she is not feeling well when she didn't want to play outside or swing - normally she fights to spend any waking moment outside playing on her new play structure.

We are taking great care of her central line. She is not happy about the ACE bandage and/or the amount of tape she has stuck to her middle. When it comes time to give her tubes "a drink" (or actually replace the heparin in her line so it will not clot and block the line) we have to remove 3-4 strips of tape off her her body. Its kind of like pulling off large bandaids and not exactly comfortable - but better than the alternative.

Since we came home we have had help almost constantly and sometimes two people at a time. Amanda was at the hospital for a couple of days and came home with us and spent the night. Grandma A came for a while yesterday. Rebekah's speach therapist came for a while yesterday. Grandma M came yesterday and spent the night and all of today. And finally Ginger Hollis came and helped in the kitchen. Thank You All!

With all of this help we have actually been able to get back to some sort of normalcy. Daddy has been able to get a full day of work in and mommy has also been able to get a few things done including a short shopping trip. Daddy was even able to respond to a fire/ems call which was great. Having some time to do the extras and get back to some of the side things sure is refreshing. What we are saying is that we are very thankful for the help of so many that we have been given a touch of our life back. This does not mean that things won't be tough for us "tomorrow" but keeping in mind what Rebekah still has to go through, we will deal with it.

Finally we want to say thank you to the couple of people that have made donations to Rebekah's Trust today. See www.helprebekah.com for more info on her trust and other ways you can help. This site (now over 1,000 visitors! was created and is maintained by a good friend Steve - thanks. One thing that isn't close to normal is the huge amount of medical and insurance bills facing us. The donations today were just in time to uplift a few spirits on this front and give us some hope. Thank You!

Please pray for Rebekah feeling better and for a continued sense of normalcy in our lives.

We're home

We were able to leave the hospital about 7pm last night. It was a long day. Rebekah was tired and crabby most of the day and she really wouldn't eat. I believe her stomach is upset and she may be afraid of throwing up again. While she is in the hospital, she gets an anti nausea medication every four hours. When she was throwing up, she got an extra dose. We have some of the same medicine (in a pill form) for her at home, too. They keep her on "maintenance" fluids while in the hospital, too. So I don't worry as much about not eating while there. At home, I try to get her to eat and drink as much as possible and realize that she may not eat much for a few days. It is sad to watch, but what choice do I have. I know her appetite will cycle, so I just encourage her to eat what she can.

Finally, about 3pm we were able to get her to take a nap. Of course, Sarah wanted to make all sorts of noise, so she needed to be out of the room or she was going to wake her sister. Amanda and I took turns walking Sarah around the hospital until she finally fell asleep, too.

By the time we got home and a few things into the house and taken care of, we decided it was time for the adults to eat dinner. We thought we would order some burgers from the local bar, only to find out that they had just closed down their grill about 15 minutes before. We were able to order some burritos and tacos and they were good, just not the burgers we were hoping for. Oh well!

Rebekah fought going to sleep and every 30 minutes or so was crying for mom. We thought her stomach might be bothering her, so we gave her some meds for that. Mom would love on her for a few minutes and tell her she needed to go back to sleep. At the same time, Sarah was being a mama's girl too. Three adults in the house (Amanda stayed with us all day, came home with us and spent the night) and both girls only wanted mom. Both Amanda and dad would do their best with one of the girls.

Rebekah slept in late today, which isn't surprising since she didn't get enough sleep at the hospital and didn't go to bed on time last night. She is supposed to be taking a little nap now, but I think she is only resting. She is calling for mom every few minutes.

It is good to be home. It is great to have Amanda here and we have a variety of people coming today to help in different ways. That is great too!

End of the day Tuesday

The day has drawn to a close. Amanda is in the room with Rebekah. Scott, Sarah and I are in the camping trailer. We hope that she continues to keep her food down and is asleep by now, so that Amanda can have a good night. It is tough enough to sleep when the nurse comes in at least every hour to check on Rebekah's line.

Aunt Tiffany came by this evening and Mom and Dad were able to leave the hospital and go out to dinner, leaving both girls with Tiffany and Amanda. It was nice to have a little break. Thanks Tiff and Amanda! Also, mom was able to get a little nap in this afternoon while Amanda kept an eye on the girls. That was well needed.

Rebekah had some fun today. She was able to get a wagon ride in as well as some time in the play room with a Physical Therapist. She had a harpist come in and play for her and even an opportunity to try to play it herself, although she was more interested in having Sarah play it instead of her. Aunt Tiffany blew bubbles with her and she had an Art Therapist in with crayons and paper. She also got to play with Suzie (a doll that wears hospital pajamas and has a central line). Rebekah can put "op sites" on Suzie and pretend to give Suzie's tubes a drink and all sorts of fun. She enjoys all of the different activities.

Uncle Chuck came out to visit with us in the trailer this evening. Rebekah was already trying to go to sleep (at least we were all hoping that with less commotion in the room, she would fall asleep) and we had headed to the trailer for the evening. It was great to see him.

I continue to be concerned about radiation and pray that it will not be required. There are so many life long issues that Rebekah would have to face if radiation is needed. I don't understand all of the issues that are involved in a decision for radiation, but I do understand that it rests on the surgeon to determine if the entire tumor can be removed. Since it is not a single mass, but has extended out, it is "unlikely" to be able to be removed by surgery. While we are in the hospital for the next round of chemo, they will be doing a variety of scans to determine how the tumor has been affected by the chemo and so that the surgeon can determine what can be done. The next step after that round of chemo will be surgery and possibly the start of radiation. I know that our God can do ALL THINGS. My prayer is that he WILL do this for her.

It's getting late and I need to try to get some sleep.

Tuesday Afternoon - Doing Better

Rebekah is doing better today than last night. She hasn't gotten sick today - but then she has not eaten a whole lot either. Her IV fluids of Dextrose (sugar) in them to help replace some of what she has lost and is not eating.

We continue to have problems with her central line. Last night she must have rolled on it funny and has pulled on the extra loop/stitching that was put in as a security measure. We talked with the surgeon (who was not having a very good day apparently and acted like a normal surgeon instead of the nice jovial social doctor that we have known him to be) and he was pretty direct that he has done all he can do to secure the line and it is up to us to "tape the blank out of it" to keep it secure.

We now have two "op sites" which are clear adhesive strong bandages about 3" square and lots of tape holding the tubes to her body. We then have her torso wrapped in an ace bandage to secure it even more. It looks like we will have to keep this up for a while. If we can get 6-8 weeks (or longer) without her pulling it out it should "Grow" into her skin and not be pulled out as easy.

Amanda is here and helping mommy with the girls and daddy is out in the trailer getting some work done. His clients appreciate that :)

Please pray that her central line stays secure and she leaves it alone.

More to add...

Frances just called down to the trailer. Rebekah has thrown up several times since I left and they are wanting to increase her fluids to deal with dehydration except that both of her lines are being used for chemicals right now. It sounds like a rough night is in store...

Surgery and Chemo...

We started very early this morning - actually not as early as we would have had to if we were coming from home, but early enough.

At 7am we were in admitting and by 8am Rebekah was being prepped for her surgery. We sat in the pre-op area quite a while waiting for Doctor Bliss, the same doctor who installed her central line initially. At about 9:30am daddy got to go into recovery and be with Rebekah (and bekka bear) as they woke up from surgery. As always, Rebekah had a rough time waking up. It normally takes her 2-3 hours to get all of the anesthesia out of her system and while that is happening she can be wide awake one moment and then the next her eyes roll up into head and she sort of goes to sleep and then wakes up again with a start screaming and crying. By noon she was doing pretty well.

Last time her central line was a tube (actually one tube inside another called a double-lumen) coming straight out of her chest with one row of stitches at the point where it exited the skin. This time she came out with the tube being sewed at the exit, a small loop about the side of a 50 cent piece and another row of stitches about 180 degrees through the loop. The idea being that if she pulls this one the loop will give first, then the first row of stitches, and only then will it actually pull to where it comes out. We also learned that the longer the tubes are in the more the skin grows around them and actually makes them harder to come out. The doctor told us it generally takes about 6 weeks for the skin to start growing onto the tube - exactly how long it took her to pull out the first one.

Rebekah gets visitors from lots of different nurses - even ones that have been assigned to her in the past but are not now. Once a nurse has her she sticks in their hearts and they always love to come back and see her, play with her (and Sarah), etc. This little girl sure is special in a lot of people's hearts!

Grandma C came down to surgery waiting and played with Sarah a while while we waited for Rebekah to come out. Then she came back at lunch time and helped feed Rebekah lunch while mom and dad went down to the cafeteria for a break - that is SO helpful. It is great having a grandma who works in the hospital!!!!

Grandma M came over after work and spent much of the evening with Rebekah. Rebekah sure loves it when any/all of her grandmas come to see her. She just delights in it.

This evening Mike, Tara, Emma and Benny also came over. They stopped by the house and brought us some needed stuff that was left behind. Basically they made a special trip down here to bring the stuff to us. This is on top of doing laundry, cleaning the trailer, taking out trash and other things that they do to help. THANK YOU SO MUCH GUYS!

By the time Rebekah's blood counts, urine counts and everything else came together so that she could start her 48 hours of chemo it was between 5 and 6pm. That means that at the earliest, if everything went exactly right, we might be able to get out of her Wednesday evening. We always knew that was a chance but pretty much figured on Thursday. We'll see.

Please pray for a good couple of days and that the chem targets exactly what it needs to. We have no way of knowing for sure if it is helping. At least we don't until the next set of scans in the middle of July. Until then we can only pray for the continued miracles we are seeing in her life. Thank you all for being a part of that.

Dad's Perspective

I don’t know what it was about coming back to the hospital today. Frances had brought Rebekah back for checkups every few days for the last week and I did not make any of those. I have not been here since we left after the last chemo. Today was tough.

There was not a place I could go, a table full of information that I read, or anyone that I talked to that did not bring a feeling of doom and gloom in my heart and a tear to my eye. When people would ask about Rebekah I couldn’t get out even the short version of “her story” without breaking down. One of the tables had buttons for the survivors with a blank to write down how long they had been a survivor. When writing out “2 months” on Rebekah’s I was totally in tears. One of the tables was taking Polaroid pictures in front of a nice backdrop; we got one each of mom and Rebekah and me and Rebekah. Just looking at either of them brought me to tears. Even helping Rebekah go through the huge basket of toys and games brought tears to my eyes – but at least these were tears of joy in the delight I was seeing in her.

While Frances took care of Sarah, I spent most of the time at the Survivor’s Fair letting Rebekah run, play and go wherever she wanted and do whatever she wanted (within reason). She sure knows the hospital really well now – far better than she knows our own property at home. At one point in time she got into the elevator and pushed a button to another floor – I thought it was going to close before I could get there and then wouldn’t that be fun trying to find her on one of 4 floors?!?!?!? I am glad, at least, that she is comfortable at the hospital and it doesn’t bother her just to be there.

In addition to the prayers for Rebekah this week, please keep Frances and I uplifted. I have the feeling this is going to be a difficult week for both of us.

Sunday Evening, Back At The Hospital

I know it has been a few days since we have had an update. Basically things have been going along fairly “Regular” and it’s hard to get to putting up an update and then say not much has changed. Well, until today, not much had changed.

It is Sunday evening and we are sitting in the trailer in the hospital parking lot. It is 9:30pm and Rebekah is bouncing off the walls and won’t listen at all (more on this later) and Sarah is screaming at the top of her lungs which she has been doing since we tried to start putting her down over an hour ago. Now, just in case you don’t have the full picture, we are ALL 4 in an 8x20 room. The frustration is growing on all parts.

The last few days Rebekah has started acting out. I suppose this could be the normal “Two’s” that she has not really gone through but it is hard to say. She defies everything she is asked to do. She says “no” to everything. She scowls at you if you ask her to do something. Then, when called on it, she turns into miss perfect pretty little girl and plays the “oh poor pity for me” game. Last weekend when all of the family was around she would throw a temper tantrum when someone asked for something that she did not want to do. When she found that was not working and she still had to do it she started pulling off her hat and rubbing her bald head as if to say “but Grandma/Aunt/Cousin/Mom/Dad etc, I’m bald and I’m sick so please let me get away with…” It didn’t work and she is getting worse. Ugh.

Today we packed up everything for the week and headed to the hospital just after 1pm. She has surgery early tomorrow morning to re-place her central line and then will be admitted to start her chemo (assuming the surgery goes okay). It seemed like a better thing to do to get down here tonight than to try and get up at 4am to try and make it down here in the morning. Then, we came even earlier this afternoon because the hospital was putting on a Cancer Survivors “fair”. Rebekah “won” the prize for being the youngest survivor there and received a full basket of toys, games, dolls, etc.

For dinner we met Greg and Christine at a restaurant close by. It was nice to get out and see some friends in a somewhat normal environment.

Please pray for a good surgery tomorrow and a good week of Chemo. This is the set of drugs that seems to affect patients the most. It does sound like we will have lots of good help (thanks to Amanda) this week! We’ll try and get updates at least daily while things are going on.

Another Good Day

It has been a good day. Sarah needed to get some shots, so Mom, Sarah and Rebekah headed to the doctor's office. I think Rebekah was glad she wasn't the one being poked today! After the shots, we ran a number of errands and headed home.

Bruce came by and put two windows in. The new room is coming together and looking great.

Carol (Scott's former assistant) stopped by and helped Scott with office work. She is always a great help!

A big thank you to both Bruce and Carol for their help today!

Rebekah and Sarah got a package today with matching summer dresses from Scott's Aunt Nancy and Uncle Paul. Rebekah wanted to wear the dress NOW. Later, she got a hold of the dress, had it off the hanger and was telling mom that she wanted her shirt changed (making it very clear that she wanted to wear her new dress). I think it was a big hit with her! Thanks Paul and Nancy for your thoughtfulness.

It seems like each day can be a challenge to find the foods that taste good to Rebekah and that she will eat. Mom worries about her eating enough and avoiding too much weight loss. Especially right after chemo, her appetite drops and she will not eat real well. Then, as her counts rise, she eats better. When we went into the doctor's office yesterday, her weight was back up to where it had been when we first saw the oncologist. That is great! This week she has been eating pretty well.

Please keep up the prayers and the comments. They are truly appreciated.

Lots of Volunteers to Thank Today!

Rebekah went into the hospital today for blood counts and all were well. Nothing looks like it will stop us from next week's schedule. Rebekah was making friends with all the other kids that were in the doctor's office (or at least she was trying). She is doing so well that it is hard to believe that she is sick.

Mom and dad are working hard to not let her see the stress it is putting on us. There are also many other people helping us to do that. What we can say is that it was truly a day of blessings from volunteers.

Our friend Karen went with us to the hospital and hung out with us girls while we waited. It really is a great help having another hand during these visits.

While that was going on, Bruce was over working on the remodel. The outside siding is now done and one of the windows is in its permanent home. Bruce should be back tomorrow to help put in one (or maybe two) more windows!

Then this afternoon our friend Ginger came over and helped around the house, cleaning and taking care of the girls. Again, a great help. Ginger also brought some meals, cookies and a cake. Yummy.

Finally, this evening a friend from Our Place Church, Ranjit, came and brought some groceries and played with the girls. Ranjit just got engaged (congratulations!) but Rebekah did not seem to know that he was "taken" and seemed very smitten with him. She showed him everything and loved playing with him - she would not let go of his hand.

Finally, I would invite you to continue to check out www.HelpRebekah.com and see some more of the updates. The photo gallery and the thank you page (With Gratitude) are growing.

I would like to draw special attention to the latest entry on the With Gratitude page - Dyers RV Supply (www.dyersonline.com). They have made a very gracious donation of some parts/equipment that will help immensley with using the trailer. They were complete strangers and made this donation after reading about Rebekah here and on the help page. If any of you need to buy any parts or supplies for your RV, please check them out.

And please frequent, email, or call those that have helped just to say "thank you." Every little bit helps us get through the difficult times emotionally and financially and these people and businesses deserve to hear that others recognize their good deeds!

Please pray for a few more days of good rest and fun without a central line and for a good surgery and chemo therapy next week.