Results - One Year Post Treatment

We met with the doctor at 3pm today to go over the results of last week's two days worth of testing. After a brief exam, both Sarah and Rebekah went off to play with Mommy Debbie and Kelsey who met us at the hospital to take care of the girls while we talked with the docs.

Not being sure how to present this exactly, I will first start out by saying that there is absolutely NO signs of any cancer recurrence. It is very difficult going through this and I have to admit that this was a wonderful surprise that I was not expecting. Don't know why, maybe its because I was preparing myself for the worst, maybe its because I have been weak in faith or ??? The negativity notwithstanding, this was SPECTACULAR news and we thank you all so much for your prayers and support.

That is not the whole story, however. The side effects are beginning to show themselves. In medical speak:
MRI FACE - There has been an increase in mucoperiosteal thickening of the maxillary sinuses bilaterally and both mastoid air cells are now completely pacified with fluid...Increasing sinusitis and mastoid fluid bilaterally.
MRI BRAIN - There is progressive bilateral maxillary sinus and mastoid air cell disease.
The translation of this - the sinuses and the area surrounding them have been pretty severely and permanently damaged by the radiation and the effects are continuing to get worse.

There was discussion about her hair (or lack of hair) on the left side and lack of eyebrow and eyelashes on the left eye. Basically if it has not grown back in the first year we should expect that it will not. Rebekah is definitely going to be in need of a good hairstylist!

There was also discussion about what may (or may not?) happen to her adult teeth as she starts to loose her baby teeth. There continues to be a good chance that there will be growth problems with her adult teeth as well as her jaw and face as a whole.
The doctor was very delighted to see that the asymmetry he was expecting to see as her face grows is much less than he was expecting. She is having a harder time opening the left side of her mouth than her right, but no surgery is necessary yet.

We do realize that this might, on the surface, seem a bit depressing. But it is NOT! It is exhilarating! Our little girl is alive and it is so delightful to have both her and her sister playing together every day! Again, thank you ALL so much for your prayers and support. We could never have made it this far without you. Please do not forget to continue to lift us up as well as the other kiddos listed to the right who are continuing to face challenges and the families who are continuing to deal with the loss of their children. With the proper perspective our life is just about perfect!

Introducing Katie

Daddy was getting overwhelmed with work and needed some help. After considering our choices we decided to have mommy help in the office (on top of everything else she does!!!) We have been lucky enough to have a new sitter for the girls twice a week. Katie, a local college student, is coming out twice a week to help with the girls. She has a long history of caring for kids and came with glorious recommendations from her previous employers. It has only been a couple of weeks but the girls adore her and she is awesome with them. Everyone, meet Katie:

It's hard to get a good picture of Rebekah when she knows its coming! This is "cheese." I think she gets it from cousin Jody.

CURLS!

They have been trying for a little bit, but today is the first day that daddy has noticed true curls back in Rebekah's hair. At least on the right side, you can still see the balding on the left side which may always be that way, we don't know.

Sorry about all the pictures all of a sudden.

Tomorrow we go back to the hospital to get results of last weeks two days worth of tests. We are starting to get a bit worried/anxious. Prayer would not hurt.

A Few Photos

It has apparently been a while since we posted a few photos and I was cleaning off my cell phone memory card so here are a few:

Rebekah this afternoon eating with chop sticks. She just had to be like the adults and, well, she ate as much with them as she normally does (about 4 pieces of rice):

Rebekah and Sarah at daddy's fire department's pancake breakfast last week:

The Testing and Waiting Continues...

Friday, we finished the tests and now we wait until Wednesday for our follow up appointment. Tumor Board meets Tuesday morning and will discuss the scans and we really don't like to get "preliminary" reports. We tend to prefer to wait until they've met and had a chance to look at the scans and determine what they see. Tuesday didn't work real well for us, so we went for Wednesday afternoon.

This morning was Rebekah's last dose of antibiotic. Sarah still has a few more days to go. Rebekah seems to be doing better. I'm not so sure about Sarah. She definitely still needs the cough medicine or as she calls it "cough booboo medicine". This morning as they were sitting on the potties, Sarah started coughing and gagging and threw up some mucus. It wasn't much, but my guess is that she needed to get it out of her throat. After that, she was hungry for breakfast and has been fine since.

Yesterday, Grandma C came out and watched Sarah while Mommy took Rebekah to the hospital for more tests.

First we went to Audiology. Rebekah did a good job of "participating" in the exam. The first thing that she did was a test with a probe in the left ear that produced tones and monitored for response. After the left ear, she did the same test on the right ear. Both ears tested within the normal range. Then, we headed into the sound booth to do more testing. Rebekah didn't do real well with the tones. She was supposed to put a stick in the bucket when she heard the tone, but she didn't seem to understand what she was supposed to do. We switched to voice and she did great with that. Then she put headphones on and did more of the same. This time the audiologist could test each ear separately. She did really well.

Her results were even better than last year. Although, I will say that last year was tough because she really wouldn't cooperate. Last year, she had so much wax in her ear that they had to try to remove it before they could even try to get accurate results and they ended up doing the "probe in the ear" test while she was under anesthesia last year. Part of the reason for better results this year is due to not being under anesthesia and part of it is Rebekah's growth.

The audiologist wanted to caution us that because of the chemotherapy drugs that Rebekah was given, her ears are more succeptible to damage from loud noises such as from a jackhammer, chainsaw or similar - even a hair blow dryer. So we need to be careful about such exposures and keep her ears protected from such things.

After the hearing test, we took a quick tour through the ward where we spent most of our time looking for nurses we knew to say hi. The wards are now locked and you have to use the intercom to get in. What a change! Anyway, we saw a couple of nurses we recognized but never had us and didn't see any of our regulars. I don't know if it was just one of those days, or if there has been a lot of staff change in the year since we've been inpatient. It is amazing to think that we've actually had a year without a hospital stay! Woohoo!

Then we headed downstairs to check in for the rest of the tests. I thought we were scheduled for an Echo, an EKG and a Panorex. They only had us scheduled for Echo. The Panorex machine is down until mid-March because they are renovating the room and we weren't due for an EKG (which is what I thought orignally, but someone said we were scheduled for one). While Mommy was checking us in, Rebekah was making friends with a 4 month old baby. He would drop his toy (which he never really had a good grasp on) and she would pick it back up and give it to him. It was really pretty cute to watch. After getting checked in, we headed up to the second floor to wait for the Echo.

The Echo Tech came down and got us. Rebekah was being very helpful until it was time to lay flat on the bed. Then she didn't want anything to do with it. We tried a few things and finally, Mommy laid down with her and she cooperated mostly - as long as she got to help with the probe. She didn't like having the gel on her and would get a cloth and wipe it off often. The Echo Tech said he didn't see anything that jumped out at him as a problem, but the cardiologist would look at it. I figure that is still pretty good news, at least better than the Tech being concerned.

We headed downstairs to get a berry smoothie, since she had done so well. After all, she cooperated and they were able to get the tests done. As we were leaving, she said she needed to go potty. We hadn't been able to get a urine sample the day before, so we headed up to clinic to use their potty and get them a sample. Rebekah did a great job of waiting until we were ready and then providing the sample.

She is really funny. The plastic catch that is put in the toilet to catch the urine is called a hat. I don't know why, but that is what it is called. Rebekah pats her head to say "hat" whether she is talking about the type she wears on her head or the type that goes in the potty. If she sees to potty hat, she starts patting her head to say hat. She remembers that is what they are called (even though she only uses them once a quarter). She really does remember a lot.

Rebekah's hair is getting longer (the hair that she has anyway). She really needs a haircut, but I haven't figured out what to do and so I haven't done anything. One more thing for the "to do" list.

Well, the girls are waking up from their nap, so I better post this before they get too noisy and I never get it posted.

Up And Out Early

Up early, no eats, no drinks, out the door, medicine, anesthesia, IV's, MRI, CT Scans, waiting, waiting, more waiting and soon to be a crabby little lady.

Yes, we are at the hospital again getting her scans done. Rebekah has done wonderful this morning and was even pointing to her arm ASKING for the IV. Normally (and this time too) they try to put little one out with gas in a mask before they do an IV. Rebekah is weird, she would actually prefer the IV and being poked as she hates, and I mean REALLY REALLY HATES the mask being placed on her face. It is the only part that we have to actually physically restrain her to get her to do. And then, in about 30 seconds, her eyes roll back into her head and out she goes. Mommy and daddy (and Sarah) leave the room and now the waiting begins.

We have an anasthesiologist that we have had one time before, when Rebekah was absolutely at her worst in the middle of radiation and when they put in her G-Tube. When I spoke with this doc last night on the phone and she realized who we were there was a long pause and then she admitted that she was taken aback as she never expected Rebekah to survive this long. I know it doesn't sound right but this is one of the best docs we have ever had - a doc who put everything on the line 18 months ago to provide Rebekah the best treatment FOR REBEKAH even though it might not have been text book. To this day we are greatful to this doc and have a very special place her in our hearts.

Prayers for the scan results please. We won't know anything more until next week; so I guess prayers for us too.

Two Girls on Antibiotics

Sarah had been getting better and then when she woke up from her nap Saturday, she was running a fever of 102. At dinner she sat and kept putting her head on the table and looking really tired and worn out. After dinner, we went to get the girls a bath. I made both girls sit on the potty before getting in the tub. Sarah just sat and sat and sat on the potty. She rarely sits for more than about a minute before she is jumping up and ready to get onto the next task at hand. So it was very unusual behavior. Meanwhile, I put Rebekah in the tub and got her all cleaned up and Sarah was still sitting on the potty - not doing anything but sitting. I got Rebekah out and dried off and into jammies and sent her to be with Daddy. Meanwhile Sarah continued to sit on the potty. She didn't want to go into the bath, but she didn't want me to give her a sponge bath either. She sat there and looked like she was going to fall asleep. Finally, I convinced her that she needed to get into the tub. But it was probably 30 minutes later. She definitely didn't feel good.

I decided that I would call the pediatrician's office in the morning and get some antibiotics for Sarah. Clearly she was getting worse. So Sunday morning when I called, they wanted to see her and wouldn't just prescribe antibiotics for her. So, we went in. Well, it turns out that she now has pneumonia. Ugh! So we skipped the amoxicillin with her and went straight to Augmentin as well. Now I've got two girls on Augmentin which only makes the diarrhea worse. What a mess! Needless to say, we're having lots of "fun" around here.

Sarah just came out of the playroom and stood here in the living room and let out some noises from her behind that told me to take her directly to the bathroom and get ready for a "fun" change. It was a mess, but we managed to keep her pants and shirt clean.

I've been giving them some probiotic tablets to try to help with the diarrhea. I don't know what it would be like without the tablets - it is bad enough with them.

One of the days when neither of the girls was feeling very well, they both wanted Mommy to lay down with them. Since Mommy can't lay in two beds at the same time, I laid with one and then with the other. That didn't satisfy either of them. So I went and got a couple of my tshirts out of the laundry and offered them to the girls to snuggle so they could feel like Mommy was there with them. Rebekah jumped at the opportunity and Sarah wanted nothing to do with it. Rebekah continues to want Mommy's tshirt with her at bedtime and sometimes she'll take it into the playroom with her. Last night Grandma A was here and put the girls to bed. Grandma asked her about Mommy's shirt and she didn't want it, so Grandma put it on the dresser. This morning, Rebekah wanted it to go to the playroom with her. Go figure!

Meanwhile, Mommy and Daddy continue to fight some of the cold/flu. It just isn't much fun around our house right now.

Rebekah seems to be feeling a little better, but she still has an icky nose and isn't eating real well. Rebekah has lost a little weight and I hope that she will gain it back once she feels better. She has thrown up a number of times, because I've been pushing her to eat more. Ugh!

Sarah isn't eating as much as normal, either, but she is eating a fair amount. Sarah just doesn't want to drink much, so I have to keep pushing her for that.

We're still planning for Rebekah's scans on Thursday and Friday. Although it has been more than a year since Rebekah was declared cancer free, we just can't really say it has been a cancer free year until we see the results from this week's scans. We just can't rest easy until we have the results. One day at a time...

Someone was asking how many appointments we have a week for Rebekah, so I started adding it up - 4 days of class, 2 days of speech therapy, and 1 day of horse back riding every week and then occupational therapy twice a month (starting in March), speech therapy (with augmentative device) twice a month (starting in March) and probably physical therapy twice a month (we need to get it approved and scheduled). And that doesn't include the scans and doctor visits that come up every quarter and the annual or semi-annual doctor visits. It keeps us busy.

Thank you for your continued support and prayers. Many days, it is the only thing that keeps us moving forward.

Happy Valentine's Day

It was a year ago, today, that we found out that Rebekah was cANCER FREE. That was indeed a good day. Next week we'll have the one year scans, so we'll know more after that. Meanwhile, she looks good (other than the bug she's got) and we'll assume that all is well.

The girls are continuing to fight this bug. Sarah seems to be doing a little better, but then she threw up once yesterday. Rebekah isn't getting any better and her nose is looking pretty bad, so we went to see the pediatrician this morning and had both girls looked at. Neither has anything in her lungs, it is all upper airway gunk. Rebekah's left ear look a little questionable and it definately looks and sounds like a sinus infection, so she's on antibiotics. It seems as though any time Rebekah gets sick, she ends up with a sinus infection. Will that ever end? And she doesn't start with Amoxicillin, but we go straight to Augmentin. So after seeing the doctor, we had to stop and get the prescription filled.

I will sometimes tell the girls that they have 1 more minute to do whatever it is they are doing and then we need to do something else. They will come back with "No Two." If I tell them they have 5 more minutes to do something, they still say "No Two." I guess they haven't quite figured out that 5 is more than 2. But it is really funny to hear them.

The other day, I told Sarah I would give her a hug and then she needed to play. She told me "No Two". I said "Ok, Two" and gave her a second hug and she said "No, Three". I said "Ok, Three" and gave her a third hug and she said "No, Four". I said "Ok, Four" and gave her a fourth hug. She said "No, Five" so I said "Ok, Five" gave her a fifth hug and put her down. It surprised me that she could count to five, but I didn't give her much of a chance to say "No, Six".

Rebekah has been home sick from school all week and I don't expect her to go tomorrow either. Next week she doesn't have school. Since they go some during the summer, they take some extra time off during the school year.

Hopefully, the antibiotics will get things cleared up, so that Rebekah's scans the end of next week don't show anything from the bug she has and get us all panicked over nothing. Thursday and Friday of next week are scan days. Thursday is MRI and Chest CT. Friday is Heart Echo and EKG, Hearing Test, and Panorex.

Gage will be admitted to the hospital tomorrow to prepare for his transplant. Please continue to keep his family in your prayers as he goes through this process. I know that it is an ugly process and heartwrenching.

Josh's scans last week showed some spots on his lungs. This morning he went in for a Pet scan. Please pray for his family as they wait for answers. We've found that Pet scans can do a pretty good job of muddying the water, so my prayer is that the scans are cANCER FREE and difinitive so that Josh's family can rest easy.

We've all Gotten Sick

I think the title sums it up. The middle of last week Sarah started getting sick. By Thursday evening, Rebekah started feeling ill. Somewhere the end of the week, Mommy got it and Daddy is feeling run down although doesn't have the full blown flu or cold.

Friday was a stay at home and do nothing day, which was a good thing. Both girls took very long naps. Saturday, Rebekah and Mommy were going to go have some fun in the snow with a Candlelighter's and Mount Hood Snowmobiler's club activity. Friday afternoon, I emailed and said we wouldn't be going after all. With not feeling well, it wouldn't be an enjoyable day and we certainly didn't need to infect anyone else with whatever it was that we had, especially any cancer kids who might be in treatment.

Both girls have been fighting fevers, vomiting and diarrhea. In addition to that, they've been pretty lethargic. They haven't been sleeping well at night, so neither has Mommy. Keeping medicine down has been a bit of a problem, too. This is one of those times when it would be helpful if Rebekah still had her g-tube. If she did, she could get her medicine in her tube, but I don't know whether it would have stayed down or not. Neither of them has been eating really well, either. But, if I push them to eat more they seem to be throwing up. Ugh!

Mommy and the girls have been home all weekend and today will be another day at home. We're not going to speech and we're not going to school. We'll take it one day at a time... We don't need to be going out when we're not feeling well and we don't need to be exposing anyone else to this.

I just hope that Rebekah is better by the end of next week, so that we don't have to worry about her scans.

I have to tell you about little miss Sarah. She will very clearly tell me that she is a big girl - when it comes to wanting to wear pullups or do things herself. At other times, she will clearly tell me that she is a little girl - when she wants Mommy to pick her up and carry her or feed her or whatever the case might be. What a silly little (or should I say big) girl!

Busy, Busy, Busy ...

We continue to run around ragged. Some days are better than others. Some weeks a little less crazy than others.

We have 1 year scans coming up the 22nd and 23rd of this month. It is hard to believe that it is almost a year after treatment, already. Annual scans include more than the quarterly scans have. We'll be doing an MRI of the Head and Neck, Cat Scan of the Chest, Panorex, as well as a Heart Echo and EKG, and a Hearing Test. As always, it makes us a bit anxious as we get close to the tests. Please pray for peace of mind for us while we wait and safety and cooperation for the tests and for clean scans.

Potty training is not going too well at the moment. Rebekah has been having more accidents lately. She had been doing so well and now a day doesn't go by without at least one accident. It is frustrating. At this point, she can be in underwear at home, but when we are out and about we have to be pretty careful. When we're at home, we can clean up easy enough (well at least we can clean up and get new clothes on and take care of any messes without much delay - not that it is always easy). Clean up isn't as easy when we are out and about. I don't know how to get her back on track. Lately, I've been allowing her to pick out her underwear and clothes in the morning and if she needs a change then Mommy gets to pick (and I don't usually pick what she would).

Sarah, too, isn't doing real well at potty training. She seems a bit more hit or miss than her sister. She gets to pick her first pullup in the morning and after that Mommy gets to pick - much to her dismay. She wants one pattern on the pullup and only that pattern - "blue princess", not the ones with 3 of the princesses including the "blue princess". She will seldom say she needs to go potty, unless it gets her out of something she doesn't want to do, or maybe if her sister is going to the bathroom.

The girls are funny at bedtime. Since I won't allow them to have a sippy cup of water any more, they ask for a little bit of water. Sarah says "me need little bit water mama". So, I get them each a syringe of water (1 tsp or less) and that usually satisfies them. They've just had some water while brushing their teeth, but they need more. How many kids would know what to do with a syringe, much less accept it and think it is normal? After Rebekah drinks hers, she usually gives her baby dolls a drink, too.

Rebekah is having some very long meal times. Mommy is being more insistent that she sit and eat what is on her plate. It is not uncommon for a meal or snack to last an hour or more. But, the good news is that she continues to slowly be adding some weight. She still likes to tell me that she is full after only a few bites. She also likes to give her food to her sister. I think she has figured out that when she gives food away to others, she has less to eat. She definitely has some brains. She may not always be able to express what she's thinking, but she does a lot of thinking.

She continues to be fine with having her g-tube gone. She giggles about it when we ask about it and says "all done". I'm glad for the good attitude about it. It is amazing how much better that can make life for Mom and Dad.

"Love you too Daddy" is what both girls will tell Daddy, whether he has told them "I love you" or not. It really is kind of cute. We've been trying to tell them that if they walk up to Daddy, they should say "I love you Daddy" and if Daddy says "I love you" then they say "I love you too Daddy". So far, it hasn't gotten through to them. One day, I'm sure it will.

Gage and his family continue to be in our thoughts and prayers. They have moved up to Seattle to move forward with transplant. He has finished his second round of chemo and his counts are increasing. Next week, he will have some additional testing to check if he is still in remission. Please pray that he is in remission. Also, his parents need to make some decisions about his treatment plan. Please pray for guidance in the decision and peace about the decision they make.