A Good Day

In general, it has been a good day. Sarah has not seemed to have any ongoing problems with her leg, so that is good. We'll hope that continues.

Rebekah has done a good job of using the potty. She has been very cooperative and had more stools in the potty than in the diaper today! Hooray!

Rebekah asked several times for tummy drinks and we were able to get 3 cans in during the day. One full can at a time without any dilution and no vomiting. Once, she told me she had an upset tummy, so we got the yellow bin out just in case but didn't need it. That means that we only needed to get two more cans in overnight and we have time to do that before Mommy goes to bed. So she gets to be unhooked for most of the night. Woohoo!

Rebekah did a good job of eating, too. Several times she asked for something to eat and did eat some bites. It is always encouraging to see.

Mommy spent much of the day on the phone with doctor's offices, billing offices, and the insurance company. It never ends!

One year ago, today, we were in the hospital. At about this hour, Rebekah's nurse and another nurse came into the room dressed in blue "chemo" gowns with masks and chemo gloves to start Rebekah's first round of chemo. They explained to us, that the chemo was dangerous and they needed to protect themselves against it. They also explained that the chemo drugs will be expelled in her urine, so any diaper changes had to be done with special gloves and that any linens that were soiled with chemo pee would be bagged separate from other linens and incinerated. I think it was then that we realized the harm that we were going to allow our daughter to be put through. It was a rather scary realization, but we had no choice.

What a difference a year has made.

A Trip to the ER

With Sarah this time and not Rebekah.

The girls were playing yesterday and Sarah fell backward against the couch and then Rebekah fell on top of her. After that Sarah wouldn't take more than 2 or 3 steps without stopping, screaming and grabbing her left leg. We called the pediatrician's office and spoke with the on call nurse. She suggested we give her some motrin and see how she is doing in an hour. If she was still hurting after an hour, then we should take her to the ER for xrays. Well, she was still having problems an hour later, so Mommy and Sarah head to the hospital. Grandma M stayed home with Rebekah. It was rather strange to be taking Sarah to the hospital instead of Rebekah.

At the ER, they took xrays of her left leg which didn't show any fractures. By the time we were seen in the ER, Sarah was walking OK and wasn't really acting hurt. The ER doc suggested that we do not give her any more pain meds (that might cover the pain so that we couldn't see it) and see how she was doing in the morning. If she was acting fine, then don't worry. If she still had problems, she should see an orthopedic doctor and he gave me the names and number for the pediatric orthopedic doctors at the hospital.

Well, this morning when I set her down she took two or three steps and cried (not as loudly as the day before), grabbed her leg and wanted Mommy to pick her up. Not really what I wanted to see. So just after 8am, I called the orthopedic doctor's office and left a message to try to schedule an appointment. They called back and we set the appointment for 3pm. After a while, Sarah was doing ok - walking fine and generally seeming ok. Really, for the rest of the day, she has done fine. We kept her appointment, anyway, just to have her checked.

The orthopedic doctor didn't see anything on the xrays either. He examined her, looking to see if she would wince (or otherwise express pain) and she didn't. He said that even with a hairline fracture she would wince, so he is pretty sure that she doesn't have any fracture. It is probably something in her soft tissue - like a bruise. She may have better times and worse times and if she is still having problems in a week, we should schedule another appointment.

It is good to know that there doesn't appear to be a fracture. Now let's hope that she continues to improve and we don't have to follow up.

Throughout the last two days, any time Sarah saw antibacterial hand wash on the wall, she had to have her hands washed. It was really cute to see. How many 19 month olds do you know who would recognize the hand wash and tell you that they wanted their hands washed? She is a smart little girl.

Nothing much is new with Rebekah. Daddy got to pick her up from school today, while Mommy took Sarah to the doctor. She seemed to like having Daddy time and riding in Daddy's car.

Busy Days

Potty training continues, but I don’t know how successful it is right now. Rebekah will tell Mommy that she wants to go potty and then when we get into the bathroom, she doesn’t want to any more. Other times, she will have a dry pullup and tell me she needs to go and then does. I guess I can’t expect her to be potty trained over night, but I can’t help but hope for it.

Rebekah has been complaining of owies (the location seems to vary) and she will just scream and throw temper tantrums unless she gets more owie medicine (even if she just had some). I’m not sure exactly what is going on – is there a general pain that isn’t being helped by the Tylenol or Motrin? Or does she just want to avoid bed or whatever I’ve just told her she needs to do? Or something else?

I can’t believe that we are rapidly approaching the end of April and Rebekah’s 3 month scans will be some time in May. The time has seemed to fly by.

Did I ever tell you how much Sarah is a climber? She can wiggle herself out of the straps on her high chair and stand up in the seat. Now she has been raising one foot up as if to stand on the tray. Mommy doesn’t let her get that far before putting an end to it. Now, she has discovered that she can climb up on the rocking horse by herself and she seems to enjoy doing that. She likes to climb up on the couch and then on the back of the couch and then stand in the window behind the couch in the playroom, too.

Friday, while Aunt Tiffany, Cousin Jacob and Cousin Michael were here, we went outside to play. Sarah discovered that she can climb up the ladder on the play structure all by herself. Now, keep in mind that when she stands on one step, the next step is closer to her hips than her knees. But she can get her knee up on the next step and then pull herself up and then stand up and on and on and on… Talk about freaking Mommy out! She also figured out how to scoot over to the slide and get herself down. Her preference, however, seems to be feet first on her belly.

Speaking of Friday, the kids all seemed to have fun. Rebekah is pretty good at telling the difference between Jacob and Michael (for those of you who don’t know, they are identical twins). It was great to get together and enjoy some family time. We’re going to try to do it regularly.

Thursday, Rebekah did really well at occupational therapy. She was staying on task (much better than the last time) and was doing the things that she needed to do, working on hand strength and other things.

Friday mid-day, Daddy headed out with the camping trailer to help with the Oregon Trail Rally, which he has done for a number of years. It is a 3 day off road/gravel road car race. Last year, Daddy didn’t get to help because it was just after Rebekah was diagnosed and he just couldn’t take the time away from the family. He made it home late last night and was off again this morning. While he was getting up and ready this morning, both girls started making noise. He was able to see both of them and help get them back to sleep.

Rebekah was not at all happy that Daddy took the trailer away and she didn’t get to go. I think one night we will need to go camping in our driveway, to make Rebekah happy.

All day Saturday, both girls kept asking for Daddy. We went to Grandma M’s and then out to lunch with her and a group of people and the girls kept asking about Daddy – they thought he would meet us at lunch. Then, when we were heading home, they were asking for Daddy again and went looking for him when we got home.

Rebekah has not been going to bed well, sometimes taking two hours or more before she is actually asleep. At the same time, she is acting pretty tired. She has not wanted to take a nap, either. It is pretty aggravating and Mommy is getting frustrated. She uses all the excuses – I need a drink, I need to go potty (or need a change), I need owie medicine, etc…

Today, Grandma M came out to the house to help with the girls. It is great to have her here. Rebekah ran to the door when Grandma got here. Sarah was taking a nap and still is.

It has been a laundry weekend – it has just been piling up, so there is a lot to do. Rebekah likes to help Mommy with it. She helped Mommy move clothes from the washer to the dryer. Our dryer has a door that opens down, so I’ll toss the clothes on the door and she pushes them into the dryer for me. She wants to be such a helper. Then we put some blue jeans into the washing machine. I would hand them to her and she would put them in. After that we went back to the play room. She got the vest that she had been wearing earlier and wanted to put it into the washing machine. After all, it was a denim vest. So we did. She is a pretty smart little girl.

As we were driving around yesterday, Rebekah was pointing out all the yellow signs. Her favorite color is most definitely yellow. She was excited to see the yellow signs. She is also pointing out buses (and telling us if they are yellow) and schools. She seems to be getting much more observant.

Rebekah has been working on two word sentences with her speech therapist and doing very well with it. We’ve been working on it at home, too, and noticing improvement.

Rebekah’s hair is continuing to grow in. There is enough hair that I didn’t want to coat her head with sunscreen, but not enough that she doesn’t need a hat. There is a wide path on the left side of her face where there are only a few strands thanks to the radiation she received. We don’t know if it will come in later or not at all. We’ll just have to wait and see. In addition, she doesn’t have much of an eye brow on the left side and only has a few eye lashes on that side. Glancing at her, you might not notice, but if you really look then it is obvious.

In the last few days, I have been giving her undiluted pediasure and she seems to be tolerating it ok. She did have one episode today where she was getting “sick to her tummy” and threw up some (a mouth full), but it wasn’t much and not really the pediasure. It was just after one of her bolus feeds, so it could have been much worse. She did a great job of holding the yellow bucket and using it. What a big girl she is becoming!

Life continues...

It has been a while since we posted, so I'll try to recap a bit.

Monday, Rebekah had speech therapy and then school. While she was at school, Mommy and Sarah stopped at the post office to mail our taxes. This was the first year that we've had to file an extension (along with estimated payments), but it was late by the time we got any information to our tax accountant. Mommy has been a bit busy over the last year and keeping the computer up to date wasn't a high priority. Ugh!

Tuesday was an at home day for the girls. Daddy was out working.

Today, Rebekah had school and while she was in class, Mommy and Sarah went shopping.

Tomorrow, Rebekah has occupational therapy. Friday, Aunt Tiffany and Cousin Jacob and Cousin Michael are coming to play. That should be fun!

Rebekah has had a variety of "minor" issues that we've made calls to different doctors to figure out what we need to do, if anything. We called the pediatric surgeon's office because she has had a little bit of blood in the discharge around her g-tube. It hasn't been much, but it had been a few days and continued. With no signs of infection or fever, it isn't a big concern.

Then there was the call to the eye doctor because she has had some discharge in and around her left eye. He thinks that it is a dry eye issue and that we need to use lubricating drops - 4 times a day plus lubricating gel at night. That is a load of fun since Rebekah just "loves" (NOT) getting eye drops. If it gets better, great. If not (or if it gets worse) we need to call them back and probably schedule an appointment.

And there was the call to the home health company because the feeding pump wasn't working properly and needed replaced.

After we got home from school, I put both girls down for a nap. Rebekah slept for a long while and when she woke up, she was pretty upset. She was sneezing quite a bit and had some blood in the discharge. She was also coughing, so it makes me think that she may have had some blood in the back of her throat, too. It wasn't huge amounts, so we aren't overly concerned. We'll keep an eye on it.

We continue to work on potty training Rebekah. She is sometimes cooperative and other times she wants nothing to do with it. We'll get there, little by little. Sarah will sometimes want to sit on her potty, too. Most of the time, however, Sarah is content with sitting on the potty fully clothed.

Tuesday and Wednesday, we had the neighbor's dogs in our front yard during the day. To make a long story short, the dogs were getting out of their own yard (through the blackberries) and needed a fence on that side of the yard, so the neighbor asked if we could keep the dogs for a couple of days while he was at work until he could get his fence fixed. At any rate, Rebekah and Sarah really enjoyed having the dogs in the yard. They could watch the dogs, from the playroom or the living room. Any time they heard them bark, they would either bark or say "dog". Rebekah seemed pretty upset when the dogs weren't in the yard.

Please continue to pray for Oliver (who is home now), Gage (who is having post chemo scans this week), Madeleine (who is having some scans this week to determine where they go from here), Josh (who is doing better but needs prayer for healing) and Kennedy (who is undergoing radiation).

Happy Easter

We hope that everyone enjoyed Easter and the reason we celebrate. God is powerful and loves us immensely.

We started the day early with church at Grandma A's church and then brunch at the church with Grandma A and Aunt Tiffany, Uncle Mark, Cousin Jacob and Cousin Michael. Then it was on to Grandma M's and some snacks with Grandma M, Uncle Chuck, Aunt Molly and Cousin Cole. Then on to lunch at Grandpa and Grandma C's with Grandpa, Grandma C, Aunt Tiffany, Uncle Mark, Cousin Jacob and Cousin Michael. The girls were dressed up in their pretty matching dresses that Grandma A had bought for them and they made it to Grandpas in their dresses. By the end of the day, the girls were getting pretty cranky. They only napped for a short while in the van and wouldn't take naps once we got home. I hope they sleep well tonight.

It has been a while since we posted, and there hasn't been much new around here, with one exception (read on to find out what...).

Thursday, Rebekah was supposed to be taking a nap. She, however, had other ideas. She took her pants off as well as her diaper and found a pullup in the drawer and tried to put it on. About then, I walked in to check on her. I asked her if she wanted to use the big girl potty and she said yes. So, that was the start to potty training. She has her ups and downs, but it has only been a couple of days. She will at times ask to use the potty and other times she wants nothing to do with it. We'll see how it goes, but I have hope. She has a piece of paper and has been getting Dora stickers as rewards for going on the potty. She has filled up two pages and we're working on number three. Now, having to go potty is one more delay tactic she uses when it is time to go to bed or do something she doesn't want to do. Oh the joys of parenthood!

I have been trying to train Sarah at the same time, but it isn't going so well. She won't stay on the potty for very long and wanders around the bathroom. She doesn't seem to know when she is going to pee. She might be standing (or walking around) and start to go and gets the funniest, surprised look on her face. I just don't think she is ready. I knew it was a long shot, but figured it didn't hurt to try.

Have a great week!

One Year Ago Today...

• We thought we had a child with internal bleeding from a bruise caused by a fall 5 weeks earlier.
• We had a CAT Scan scheduled for the afternoon, to see what was wrong.
• We fully expected that they would keep her overnight to "fix" the bleeding.
• Our little girl wasn't able to eat anything, because she had to have anesthesia for her CAT Scan and they were fitting us in and the only time available was in the afternoon.
• We fretted about the anesthesia, because of the "risk" involved.
• We had a three year old with developmental issues that had her in Speech Therapy, Physical Therapy and Early Intervention (School) to try to help her "to be the best she could be".
• Our three year old had beautiful long curls.
• We had no idea what a blog was and how it worked.

By the end of the day:

• We had a 3 year old who probably had cancer.
• We had an appointment the next day with an Oncologist (now that is a scary word for a parent).
• Her developmental delay issues didn't seem so bad.
• We had many phone calls to make to grandparents, aunts and uncles.
• Our life was upside down.

In the past year:

• Rebekah has endured 14 rounds of chemo and 31 radiation treatments.
• Rebekah spent 72 nights in the hospital.
• Rebekah has had 3 rounds of scans.
• Rebekah has had 50 days with at least one anesthetic, some days it was two or three.
• Rebekah has had 3 Trips to the ER.
• Rebekah has had 6 Blood Transfusions and 4 Platelet Transfusions (that was actually really good).
• Rebekah has had 61 days of Antibiotics
• Rebekah has had 114 GCSF Shots to help boost her immune system
• Rebekah has had 35 weeks of supplemental nutrition (and counting).
• Rebekah lost her hair.
• We've watched as other families suffered the loss of their child to cancer and other families struggled just to keep their child alive.

Today:

• Rebekah is cANCER FREE.
• Rebekah is back in school and enjoying it.
• Rebekah is back in Speech Therapy, Physical Therapy and we've added Occupational Therapy.
• Rebekah is getting her hair back.
• Rebekah has a lot of energy and spunk and in so many ways seems unaffected by the things she has been through in the last year.
• Rebekah is eating several times every day.
• Rebekah has a constricted tear duct, but no vision issues that we are aware of.
• Rebekah's hearing is in tact.
• We understand terms like Ewing's Sarcoma, Malignancy, Neutropenia, ANC, RBC, WBC, Platelet Count, Hemoglobin, Hematocrit, Transfusion, CAT Scan, PET Scan, MRI, Panorex, Civo, Propafal, Relapse, Recurrence, and Remission.
• We have figured out how blogs work and have made many new friends because of it.
• We have made many new friends because of this journey we have taken.
• We have learned to love our kids and love on our kids everyday.
• We have learned that we never know what tomorrow (or the next hour) will bring, so we have to live (really live) today.

Tomorrow (and the future):

• We never know what it may hold, so while we know there are many possibilities we have to deal with the realities. There is no sense in fretting over the possibilities.
• Rebekah will hopefully be able to eat enough on her own so that she can have her feeding tube removed.
• Rebekah may have vision issues - anything from cataracts to blindness.
• Rebekah may have hearing issues in one or both ears.
• Rebekah will likely need reconstructive surgeries as her jaw grows so that the function of her jaw is corrected.
• Rebekah will likely have dental issues - anything from really needing to be diligent in caring for her teeth to having her adult not come in on the left side.
• Rebekah will likely have learning disabilities, so we need to be prepared to "work" through those.

It has definitely been a roller coaster ride. We have learned many things, many of which we would rather not have had to learn. We have made it through the last year by trusting in God to help us through it and thanks to the prayers, concern and assistance (financial and emotional) of so many of our friends (those we knew a year ago and those we've met throughout the year). Thanks for your part in that.

It is proving to be an emotional week for us, so please continue to pray. Praise God, Oliver is home after his second transplant.

St. BALDricks Day

A good time was had by all of Team Maggie May. The "little" pub that opened their doors to this great fundraiser was packed all day long and, as they said, the hair was a flying.

With your awesome help, Team Maggie May (3 of Maggie's relatives and me, daddy, raised close to $4,200.00 to help fight kiddo cancer. The team was organized in Maggie and Nikolette's honor and that was a HUGE deal to me. The t-shirt above is what mommy and daddy made the night before.

Team Maggie May before:

and after:

Yes, it is true that, even when combined, we did not have "a lot to loose" but the spirit was very much there. In fact I was somewhat upset that they were using clippers only and not truly shaving. I would, now, like to see how I looked shaved but am afraid to let anyone (myself included) that close to me with a razor that is not a professional barber.

Obviously the memories of Maggie and Nikolette where only a part of why I wanted to do this:

It was totally awesome to be able to be there with Rebekah. There were lots of people we knew including nurses, docs, other kiddos and families etc. and Rebekah loved to go around and say "hi" to all of them, give huggs and love on everyone she could find. She absolutely loves crowds and people. We didn't realize it as much at the time but I think this is one of the reasons being couped up in the hospital room and having a low immune system was so difficult on us.

Today is another busy Monday for Rebekah (and all of the girls.) Speech therapy and school for Rebekah and while that is happening then mommy is going to be running a lot of errands including taking taxes to the tax man - early this year. ha ha! Then they will be home just in time to see daddy run off to drill with the fire department. THIS is "the good old days!"

Been A Couple Of Days

It's been a couple of days since our last post. Things are going along just peachy. The girls are playing well and Rebekah really enjoyed school and therapies this week. Her teachers were excited to see that she is "still" as far along as she is.

Tomorrow is St. Baldricks day where Daddy is shaving his head in memory of Maggie and Nikolette. Please see the post a couple down and please please please visit TEAM MAGGIE MAY's page. We are almost there for donations to meet our goal. Can you help at the last minute? How about joining us downtown Portland tomorrow, Sunday, around noon?

Hopefully tomorrow we can get you some pictures of the big event.

Getting Back to "Normal"

We seem to be recovering from our illnesses. Rebekah has been back in school this week (they were off for two weeks for spring break which coincided with the worst of her illness/infection). She also had speech therapy on Monday and we have occupational therapy scheduled for tomorrow. She continues to have diarrhea, but we've now completed the antibiotics and the infection seems to be better so I hope that the diarrhea will come to an end soon.

We want to thank those of you who have donated towards Daddy's St. Baldrick's head shaving event in honor of Maggie May and Nickolette - the Warlick Family, the Dunham Family, the O'Kane Family and Anonymous (we don't know who you are, but thank you). He has nearly met half his goal and that is great progress! It is a big encouragement to us, so thank you. We look forward to seeing many friends at the event, many of them touched personally by children's cancer. If you would like to join us, please do. We would love to see you there! It should be a great bash with lots of family fun.

We had a couple of visitors yesterday - Marita and Beth, Make A Wish volunteers. We are working with them on putting together Rebekah's Make A Wish. Make A Wish is for Children who have a life threatening medical condition. Rebekah's cancer diagnosis qualifies her and we thought we would try to get something going. Please realize that nothing has changed with her condition, we just want her to have a special treat and take advantage of the opportunity. We haven't decided, yet, what to do but we expect it to be Dora related since she seems to adore Dora. It is fun to think about doing something special.

A Very Special Request

Many of you have been gracious and donated to help us out over at www.HelpRebekah.com. Rebekah's trust continues to remain in need of donations and will be used for her medical bills and surgeries as she continues to need them. Thank You!!!

But for now I would like to draw your attention to another need and make a very special request. I have joined Team Maggie May in the St. Baldrick's Fight For Cancer day this comming Sunday. If you have been with us for very long you know that Maggie was a beautiful little friend who we fought side by side with in this battle over cancer. Maggie's cousin is heading up this team and I am honored to be a part of it. My participation is not only in honor of Rebekah's survival but also in the beautiful memories of Maggie and Nikolette; both friends who we have lost during our battle this past year.

Please see http://www.stbaldricks.org/team_detail.asp?id=2015 for details on the team. We were very touched this entire year by Dr. Olson, Nurse Darcie and Nurse Suzi who participated in St. Baldrick's fight last year and whose "slim hairlines" reminded us every time we saw them how much they cared. It meant SO much to us and now this is my chance to give back.

Please go to Team Maggie May to check out our team and/or to help us out. My goal of $1,000.00 is not very much but it is a great honorarium to Maggie and Nikolette in my heart. If you can help please do. A donation form can also be download HERE. You can also donate by calling 888-899-BALD.

We will be at Barracuda's this coming Sunday, April 9th, 2006 at about Noon. If you are close please join us in the festivities and watch us go bald to fight childhood cancer.

PLEASE SPREAD THE WORD

TO AS MANY PEOPLE AS YOU CAN THIS WEEK.

A Picture Is Better Than Words...

You should be able to click the picture itself to get a bigger closeup image.

Sunday Evening

Rebekah has been throwing up and has nasty diarrhea, which has caused a diaper rash. I think we can thank the antibiotics for both of them, but don't know if it could be the bug that is going around. In any event, I have to deal with the throwing up and the diarrhea - lots of laundry and lots of diaper changes. She has been continuing to eat some, but doesn't seem to handle the tube feeds very well.

Both Rebekah and Sarah have been running low grade fevers and a bit more cranky than normal. They have both had lots of poopy diapers today. I feel like I've changed a hundred diapers today. I know it hasn't been that many, but it sure feels like it.

Daddy spent most of the day in the office today. It has been a bad couple of weeks for getting work done and he tried to make a dent in it today.

Grandma A stopped by yesterday and brought Easter outfits for the girls - matching dresses, sweaters, socks, purses and a hat for Rebekah. She visited for a bit and the girls were excited to have her here.

Grandpa and Grandma C stopped by today and visited for a bit. They brought a turkey breast out for us which Grandma C had baked for us and it made for a great dinner. The girls seemed excited they were here. Rebekah ran to tell Daddy that they were here. It was really cute.

Rebekah has been tickling Sarah while Mommy changes Sarah's diaper. Sarah will just giggle and giggle. It is really cute to watch.

There are many cancer kiddos that we have come to know and love. We keep their links on the right side of the page. Here are some bits for some of the kids. Oliver had his transplant (number two) and is waiting for signs that it is starting to take hold. He continues to be in isolation. Madeleine's family continues to research and try to determine where to go from here. Josh is eating some food by mouth, which is fabulous. He still needs prayer for his eating and for his trachea to be healed. Kennedy is having insurance issues. Gage should be in tomorrow for his last round of chemo. Warren is CANCER FREE.