A Memorial Service and Some Thoughts

I went to a memorial service last Saturday. No, it wasn’t another of our kiddo friends with cancer; in fact it wasn’t even for someone I knew. It was for the wife of a friend and colleague of mine.

It was a beautiful service. It wasn’t like so many that I have been to that make a saint out of an ordinary person, ignoring all of their fault and fantasizing about who they really were. This was an open, honest sharing time. It was different and it was refreshing. Through the service I came to know this lovely lady in a very small way. I learned that she was a very remarkable woman. And what I learned most of all was that I missed out by not knowing her.

Her husband, a long time and well respected community member spoke a lot about their family and reminded everyone in the overflowing church that you never know when will be your last moment. He admonished everyone to not loose even one single opportunity to say “I Love You,” to get that kiss goodbye, or to let a cherishable moment slip by with the thought/hope/expectation that you are too busy now and will make up for it later.

Many of you may be wondering why I am putting this here on Rebekah’s blog? Well, in many ways it is because the shared sentiment above is exactly what we have learned and have been trying to request of you all through Rebekah’s trials and treatments. The other reason is that I want to share with you how Rebekah’s experience has changed me. Death, loss, funerals, memorial services etc. never used to bother me; I was emotionally cold and stoic to them only to deal with the sorrow and emotions in other ways at other times. But not now. I bawled like a little baby experiencing pain for the first time during this service. My eyes cried, my heart cried and my whole body cried. I came out of this service emotionally drained and renewed – in a good way. And all of this for the wife of a good friend; but still someone I didn’t even know. Yes, life’s experiences DO change us.

Please, love your family (especially your little ones) like there is no tomorrow because all too often there won’t be. And, let yourself be changed.

Is It Tuesday All Ready...

...it sure seems like Monday.

This was a very busy weekend. Friday afternoon/evening Grandma and friend Dinah, and "Cousins" Ann, Joe and JJ showed up in their motorhomes and took up residence in our side field for a family weekend. Saturday was a bunch of individual trips to different places and a family evening together. Sunday was a trip to the Children's Museum where we met up with more Cousin Cole and Aunt Molly and Uncle Chuck. Finally Monday was a large family and friend bbq with motorcycle rides, hayrides, toys, walks in the park, etc. etc. etc.

Rebekah was absolutely loving every minute of this weekend. She adores having people around and a non-stop flow of them was great. She and Sarah got to go to bed with Grandmas around and wake up with Grandmas still here. Monday morning they woke up at 6am and, instead of their usually calling of mommy and daddy, all either of them would say was "Grandma..."

I will leave it up to mommy to post details but I wanted to get something up and a few of the pictures of the weekend:

Sarah at the Children's Museum


Rebekah (with Cousin Cole and Aunt Molly and friend Sarah in the background) on a hayride


Cousin JJ and Rebekah on Cousin Cole's Pedal Bike in "Our" Park that borders our property


Daddy and Rebekah on the little motorcycle

Rebekah Loved Horseback Riding, Pray for Oliver

Rebekah loved her horse back riding therapy on Tuesday. She didn't want to put the helmet on, but finally calmed down and allowed it. She had great balance on the horse - better than we've seen (I think ever). It was such a delight to watch her. Her instructor is working with her on speech as well as her physical abilities, which is great! By the end of the half hour, Rebekah was starting to show that she was getting tired. I'm excited to see how she does with it.

When I asked her the next morning if she went horse back riding yesterday, all she would say is more, more, more. I think she enjoyed it. Today, when we talked about horse back riding, she told me she wore a helmet. She remembers a lot.

Otherwise, we're doing about the same. Not much else is new with us.

Please pray for Oliver and his family. They are trying to figure out what is wrong with Oliver. No Leukemia, but they are not sure what is wrong.

Three Month Scans Are CLEAR

Rebekah's scans are CLEAR! No signs of cancer. They did show some sinusitis, so the doctor gave us a prescription for an antibiotic for that. I expect that will be an ongoing issue for Miss Rebekah. The radiation has done its damage. But, it can be treated and we can be thankful for that.

We asked the doctor about whether we should expect her hair to come in on the left side "later" or would we have seen it by now? She said it will probably be difficult for it to come in, so her hair will likely be much thinner on that side, but the comb over look just might work. Pretty much what we figured. There are worse things!

She seems to have sprouted up a bit in height 104.5 cm now and the last heights I can recall from during treatment were just over 103 cm. Her weight is just about the same - a little bit lighter from not having much pediasure over the weekend (with the anesthesia and potential nausea and just having too many fun things to do instead of sitting and getting some nutrition).

Unless we think Rebekah needs seen, our next round of scans will be August and next appointment with Oncology will be then as well. So, I guess we get to breathe a little easier for a few months.

All in all, a good day.

After our clinic appointment, we went in search of Josh and his family. We knew they were probably hanging out somewhere, since they had a procedure in the morning and clinic appointment in the afternoon. We found them, just where we expected - the Star Lounge. It was good to chat for a bit with them.

Currently, the girls are napping and later we will head to Rebekah's Horse Riding Therapy. I think she will enjoy it. We'll have to wait and see, but not too long...

Thanks for checking in.

Fun Camping Trip

Rebekah did well with her MRI. It started a little late and lasted a little longer than we expected, but that can happen.

We took the camping trailer with us to the hospital for the MRI and headed to the campground after that. We had a little bit of a scare with the makings of a fever when we arrived at the campground two hours later. A little motrin and that took care of it. Rebekah perked up and was her typical self.

We had a good time camping with family and friends. The girls enjoyed spending time with Grandma M, Ann & Joe and JJ, Dinah and all the others. Getting them to go to sleep (and stay asleep) was fun. We had bought a couple of Ready Beds (air mattress with a cover around it and attached sleeping bag) for the girls. The first night, Rebekah did fine sleeping in hers, but Sarah wouldn't stay on it. I had brought a playpen for Sarah, just in case. So for her nap Saturday and bedtime Saturday night we got the playpen out and used it instead. She'll grow into the Ready Bed, but just isn't ready for it yet.

Speaking of Sarah and bed time - one day last week, Sarah managed to break the rails on her bed. She had been standing on the bed and rocking against the rail and it snapped the plastic. So, no more rails. She has to be a big girl and learn to sleep in the middle of the bed, so she won't fall off. Of course, the first night, she fell out in the middle of the night. She didn't get hurt, but it did shock her and she was crying and standing by the bed when I got to her. Rebekah still falls out of bed periodically, so I guess I should expect it from Sarah for a while too.

Tomorrow at 11am we go into clinic for our follow up appointment to the 3 month scans, so we'll know the results tomorrow. Please continue to pray for CLEAR SCANS.

Also, tomorrow afternoon is Rebekah's first day of horse riding therapy, so it should be a good day.

Rebekah has been continuing to take her bolus feeds with only occasional vomiting sessions. She continues to need some tylenol and/or motrin each day as well as her claritin, septra (antibiotic that she gets because of her depressed immune system) and some occasional benadryl.

She is continuing to take bites of food and wants to eat often, although not often very much. She will say she wants x and then won't touch it and then wants y and won't touch it either and says she wants z. While I want her to eat, I don't want to teach her that she can say she wants something and then not even try it. Very frustrating.

Rebekah's therapy sessions and school continue and she seems to enjoy them all. She gets really upset if we go into town and don't go to school. It will be tough this summer when there are a number of long breaks. She will get pretty sad about that.

A Quick Update

We've been keeping busy. We were able to get Rebekah's Chest Xray and Panorex done on Wednesday. Aunt Tiffany was able to watch Sarah at the last minute and that made it possible. Thanks so much Tiffany! Rebekah did a great job of holding still and cooperating, so we got a berry smoothie as a reward. Tomorrow is her MRI which means she will be sedated - no breakfast. And since she has no more central line, she will have to be poked to start the IV. We have to be there at 8:15, so that means leaving early. Plus, we're taking the camping trailer with us and leaving from there for a weekend camping trip.

Sharing a Room, What Fun!

Rebekah and Sarah continue to share a room. Today, I moved Sarah's dresser and diapers into "their" room. Bed time (and nap time) can be fun with both girls getting out of their beds, roaming around the room, getting clothes out of the dressers, etc...

Sunday night, was especially difficult. After an hour of putting them back into their beds I finally had to separate them, so Sarah went to the crib until she fell asleep (after that I moved her back to the bed). They were well past tired and just wouldn't cooperate. Sarah seems to be the bigger troublemaker. Rebekah was trying to go to sleep, but Sarah was making it difficult for her.

At times, both girls have said they wanted to go night night during the day. So I've put them in their room and watched to see what would happen. It seems as though they just want to play in their bedroom. So how do I know if they really need a nap, or just want to play.

I was hoping to get Rebekah in this week for her Panorex and Chest Xray. So far, it hasn't worked out. I haven't given up hope, but I'm not sure if I'll be able to get it accomplished. Friday, we go in for her MRI (and attempt the Panorex and Chest Xray, if we don't do them sooner) and then Tuesday we have our clinic appointment to check on the results. Please pray for clear scans as well as peace of mind for us while we wait. I'm trying hard not to live in fear, but I can't help but worry some.

Rebekah's hair is continuing to come in. There is definitely an area around her left ear that isn't coming in (or has only a few stray hairs) and she still has limited eye lashes and light eyebrow on the left side. Once her hair grows longer, the "comb over" method will probably cover it up, except for the eye. If you look at the right side, you might not notice anything was wrong.

I'm sure there is more to tell, but I'm tired and not able to think well. I guess I'd better run off to bed.

Happy Mother's Day to All

We celebrated Mother's Day today. We had a good crowd out to the house - Grandma M, Grandma A (who brought Cousin Jacob and Cousin Michael), Aunt Molly, Uncle Chuck and Cousin Cole. Aunt Tiffany and Uncle Mark were out of town, so they couldn't come. (Cole is pulling Jacob and Michael while Rebekah helps push.)

The weather was so nice that we stayed outside and even set up tables and had lunch outside. The kids enjoyed playing outside and did a pretty good job of sharing. Five kids and 3 swings (only two that have the extra support for a toddler), 3 ride on toys, 3 balls and 2 wagons took some good sharing skills.
While we were playing, Daddy headed off on a Fire Department call. I stepped inside, to get dessert ready and heard on the scanner that the call was just up the road from us. I told the kids (and the adults) that we would see a Fire Truck pretty soon. The Rescue went by and captured the kids attention. We had four kids all standing by the fence watching for the next Fire Truck - Sarah was more interested in the balls that were in the yard. (Left to Right: Cole, Michael, Jacob, and Rebekah.)


We had a great lunch and lots of fun, so I call it a success.

We have had a lot going on this week... And Sarah is growing up fast.

Sarah graduated from her high chair to a booster seat at the table. She was trying to climb out of the high chair all the time, so I figured we'd try making her a big girl at the table. Now she has figured out that she can tip her chair backward by pushing on the table with her feet. Hopefully we can get that one stopped. She is pretty insistent that she needs a Dora placemat when she sits at the table, but she plays with it - picking it up, sliding it around the table, etc... Rebekah seems to have taught her some bad habits. We're working on both of them.

Sarah, also this week, figured out how to climb up on the rail of her crib. Twice, while I was in the room, she climbed up and sat on the rail of her crib. I wouldn't let her go any farther than that. The next step in that is to fall to the floor. Not really what I want. So now what? I dropped the spare bed in Rebekah's room to the floor (box springs and mattress) and put the rails on it. That was Friday morning.

After our errands Friday, I tried to put the girls down for a nap (both in Rebekah's room). Well, it didn't work. They would not go to sleep. At bed time, however, they did cooperate. It took some persuasion, but they cooperated and slept until 6 this morning. It was a bit of a struggle to get them to take a nap this afternoon, but we finally had some success. Again, it took some effort to get them to cooperate at bedtime tonight, but they seem to be asleep.

We'll have to see how the girls do in the same room. One of the changes that we have to make is that Rebekah cannot have her tummy drinks at night since it wouldn't be safe to have Rebekah connected and Sarah free. So, she needs to get them in during the day, or she'll get bolus feeds at night while I sit in the room with her. So, I guess that pretty much puts an end to pump feeds. So much for the supplies we got this week.

We have Rebekah scheduled for Horse Riding Therapy, starting a week from Tuesday. We are looking forward to it. I think Rebekah will enjoy it. Only time will tell.

We got a package this week from Yamhill Carlton High School - the High School that adopted Rebekah as their Sparrow. The package was from one of the classes, with a Mother's day card and gift. It was so very thoughtful. It never ceases to amaze me how unexpected packages can arrive at just the time when we are feeling down. So thanks to YC High School for being an encouragement to us once again.

I have spent a lot of time this week thinking about the Moms who have lost their children to cancer - Maggie's Mom, Nikolette's Mom and others. While I may be frustrated with Rebekah's issues, I know these Moms would give anything to be worrying about problems like Rebekah's. It reminds me to be thankful for what I have - my little girl is alive and generally enjoying life. What a blessing that is, regardless of any of her issues. It all comes down to perspective. I'm going to choose to love my girls and thank God for each day that I have with them.

Happy Mother's Day to each Mom who reads this - enjoy your day! Children are a blessing, and each day with them is a blessing (even the bad ones).

Busy Days

We continue to be pretty busy around our house. Will it ever let up? I doubt it. This week might be a little quieter than last week. Right now, I have two days with nothing scheduled for the girls, so maybe we’ll have a couple of quiet days at home.

Rebekah seemed to enjoy going to see the horses on Friday. We’re trying to see about getting her scheduled for some sessions, but we haven’t gotten that done yet. The therapist that we are hoping to use is working on a degree in Speech Therapy and has been working with Rebekah’s physical therapist with hippotherapy (a combination of horse riding therapy and physical therapy) so she seems like a good fit. Horse Riding can be great for strengthening muscles, hand/eye coordination and balance – all things that Rebekah can use help with.

Jacob and Michael (or as Rebekah would say “two”) came out Friday for a play date (along with Aunt Tiffany). The kids all had fun. For a while, they played Elefun (the butterfly catching game) and seemed to enjoy that. They would all help get the butterflies back into the elephant for the next game and all (the older 3 anyway) took turns turning it on.

Saturday, Daddy was gone most of the day. By midday, Rebekah was getting pretty cranky. I tried a couple of times to get her to take a nap (to try to alleviate the crankies), but it didn’t work. We did some coloring and played with playdough and that helped a little. Playdough play is good strengthening play. The girls liked the playdough “cookie cutters”. Then, we decided to go outside and play for a while. As we were getting ready, there was a knock on our door. Some of the neighbor kids brought down their new puppies to show Rebekah and Sarah. The girls liked the puppies, but were more interested in playing.

Saturday night, we went out to eat with Grandma M. By the end of dinner, Rebekah was melting down. Mommy didn’t get to finish her sandwich before we had to go, so I had it for a late night snack.

Sunday, we went to Gales Creek Church. They have been praying for Rebekah and several of them have helped us out. It was good to be in church and worship. They are a very friendly church. They insisted that we stay for potluck afterward, but we had to get home.

Sunday afternoon, Uncle Chuck, Aunt Molly, Cousin Cole, Grandma M and Grandma A came out for a barbecue. Rebekah had been talking about Cole for a couple of weeks, so we thought we would try to get them together.

Potty training continues. She wanted to give her sticker papers to Grandma M, Uncle Chuck, Aunt Molly and Cousin Cole (Grandma A had already left). Often, while Rebekah is sitting on the potty, Sarah will be in the bathroom with us. Sarah, sometimes, wants to sit on her potty, too. Sarah thinks that she needs all her clothes off (except maybe socks) in order to sit on the potty. It is kind of funny, but cute.

The other day, she sat for a couple of minutes and she had gone pee into the potty. She got big praises and got to pick out two stickers for her paper – one for telling Mommy she needed to go potty and one for going pee. Meanwhile, her sister was still sitting on her potty, so I couldn’t dump Sarah’s. And Sarah decided to put her foot into her potty, sock and all. Ugh! That was just one more thing for Mommy to clean up.

When Sarah is in the bathroom with us, Rebekah will pick out her sticker(s), hand them to me and I’ll start to take the backing off and then hand them back to Rebekah to finish getting the backing off. Then she’ll give the sticker to Sarah to put on the paper while she puts the backing in the trash. Sarah wants to be so much involved and Rebekah wants to let her. It is neat to see their bond.

Last night, Rebekah threw up after one of her bolus feeds. I think it was just too soon and her tummy was over full and then she got mad and that was it. We’ll keep an eye on things, but I expect it was a one time thing (and not a new normal). She had been pretty insistent that she wanted tummy drinks, so I agreed, even though I thought it was a little too soon. Guess I’ll have to learn from that one.

The girls have been waking up earlier and earlier. This morning it was before 5:30 when Sarah started making noise. I was able to put her back to sleep for a while, but between her and her sister, I never fell back to sleep. Finally, about 6:15 we all got up. I’ve been lucky (with them sleeping late) for so long, maybe my luck is running out.

A Couple of Country Girls

Last night we all went outside to water some new trees that a friend had given us. While we were out Friend, Neighbor and Professional Photographer Mindy stopped by and grabbed a few priceless moments:

What a couple of days it has been

I feel like we've been running ragged. Tuesday, Sarah, Rebekah and Mommy headed out the door late morning, dropped Sarah off with friend Gaye (thanks Gaye) and then Rebekah and Mommy headed down to the hospital for a few appointments.

First, we stopped at the surgeon's office to have them take a look at her g-tube site and make sure they didn't see any problems (it seems to bother her and has a little bleeding in the discharge). It looked fine to them, so no need to worry. I really didn't think it was an issue, but figured it didn't hurt to check.

Then we headed over to Diagnostic Imaging to see if we could get her chest xray and panorex done. They are part of her 3 month scans due this month and we figured if it worked, great. Otherwise, her MRI is scheduled for May 19th and we'll try to do them then. They were able to fit us in, actually pretty quickly. We got the chest xrays (front and side), but she just would not cooperate with the panorex. It just isn't possible to do the panorex if she won't cooperate, so we bailed on it. No convincing or bribing in the world was going to work. Ugh! Later in the day, Daddy got a phone call that said that the front view chest xray wasn't good enough and it needed redone. Ugh!

After that, we grabbed a bite to eat and got to see Grandma C. Grandma C took Rebekah for a little walk.

Then we headed up for her appointment with the development and rehab doctor. That was quite an appointment. He examined her and watched her play and walk, etc... He suggested that we keep her in the therapies that she is in. He also explained that sometimes, when a child has delays in multiple areas (in Rebekah's case - gross motor, fine motor and speech) without a known cause, therapies may be helpful but they often won't help much. That doesn't mean we should stop the therapies, just that we need to understand that it may not help much.

As for her language skills, he suggested that we may want to continue to teach her signs as an alternate expression of language. If we wanted, we could look at alternative communication devices, but he didn't feel that was necessary.

As for the shoe inserts, they are a good idea. They should help with the pronation (walking on the inside of her foot), but may only help while she is wearing the inserts. Her pronation is not so severe as to need other medical intervention and she is able to walk, so those are goood things.

Her reflexes have been badly damaged by the chemotherapy. Before her treatment, they were described as brisk and now they can barely be found. They may return, but we'll have to see.

It would be a good idea to get her into the Feeding Clinic for an evaluation. So he gave us a referral for that. Hopefully, they will have some useful hints for us with getting Rebekah to eat more. We will try to get that scheduled.

All in all, I guess what I learned is that we are doing the right things, but we shouldn't expect miracles. She probably won't catch up with her peers. We may never know how much of her difficulties are caused by the cancer treatment and how much of it existed from the Cerebral Palsey, but it doesn't really make a difference to how she would be treated.

Just as we were getting ready to leave the hospital, Daddy was arriving at the hospital to meet with a client. So we got to see him for a few minutes, until Rebekah started to melt down and we needed to head for home. After picking Sarah up, we headed home, got some dinner and I put the girls to bed. By that time, I had an incredible migraine headache. The girls were both screaming and not wanting to go to bed, which did wonders for my migraine. I gave Sarah some Tylenol (in addition to the decongestant) and she seemed to settle down. Rebekah and I had a talk about Mommy not feeling well and really needing Rebekah's help and she settled down, too. I went right to bed, too. Several times during the night, one or the other of the girls needed attention and by 6:30 Sarah was up and wouldn't go back to sleep. Not only that, but she had made a poopy mess all over her bed. One more thing to deal with. She went right into the tub. What a way to start the day.

Wednesday, was school for Rebekah and errands for Mommy and Sarah. Grandpa came out and had some pizza with us for dinner and played with the girls. They always enjoy that.

Daddy has been really busy this week. He hasn't been home any evening this week.

The girls have been uncooperative. Sarah continues to stand up in her high chair and I haven't been able to get her to stop. They are disobeying Mommy, running away and just being uncooperative. Yesterday, when we took Rebekah into her class, Sarah did not want to be carried, but when I set her down she wouldn't walk either. Ugh! Then they will run in opposite directions. By the end of the day, I'm exhausted. I find myself raising my voice so much with them that I'm getting frustrated, but they don't seem to listen unless I do (and then only some of the time).

There is one thing I forgot to tell you in my last post. Saturday, while Daddy was out he drove through Yamhill (the town where the High School is that adopted Rebekah as their Sparrow) and saw a car wash, which got him thinking about the Sparrow Club and that we hadn't heard anything from then and wondered what they were up to. He thought about getting the car washed, but they were all full including a truck and trailer so he didn't stop. Later that day, we got an email from a friend who stopped at the car wash (probably the truck and trailer that Scott had seen) and they were surprised to find out that the proceeds from the car wash were going to Rebekah - it was the Sparrow Club. It was such an encouragement to us, to hear about it. Had we known about it in advance, we could have brought Rebekah down. Oh well!

We are Still Here

We just haven't posted in a few days - well almost a week. I (Mommy) just haven't had much energy to do anything. I've been in a bit of a funk. So, sorry that I haven't posted.

Sarah's leg seems to be just fine. We had one more little "I'm not happy walking on it" episode which lasted until I picked her up and that has been it.

Rebekah has been doing well with her bolus feeds during the day. There have been several days that she hasn't needed anything for most of the night (at least after I go to bed). And she is handling it without any dilution, so that is great!

Rebekah has been complaining of owies in her mouth, which is usually where she points whenever she hurts, but in the last week or so I actually think she has owies in her mouth. Not quite sure what the deal is, but she tells me the owies are on her tongue and if I give her some magic mouthwash (on a toothette - which is a pink sponge on the end of a stick) and ask her to put it on the owies she puts it on her tongue. I couldn't see anything wrong with her tongue and finally took her to her pediatrician today to look at it. He doesn't see anything wrong either and her throat looks good. So we keep doing what we're doing.

Rebekah also has had some blood in her snot and she's been sneezing a lot more than usual. So, I asked the pediatrician about that, too. With the drying that she probably experiences thanks to the radiation, we could expect some blood to show up. We can use a little vaseline or neosporin to try to keep it moist and see if that helps. I bet that goes over well! Again, no obvious signs of trouble.

Mommy, Daddy and Rebekah all seem to be fighting some allergies. And Sarah seems to have come down with a bit of a cold - runny nose. Oh what fun!

Potty training continues... She has just about used up the stickers that I bought - I guess I'll need to get more (although I know I have more stashed around here somewhere). She has been playing the "I'm done, no I'm not, yes I am" game with me which isn't any fun. The other day, it landed her butt in the water. She had pushed the stool away from in front of the toilet and got herself down (which she doesn't have any trouble doing) and then decided she wasn't done so she tried to get herself back up (I'm telling her not to, but she's got ahold of my hands and won't let go). So in pushing her way back up, she pushes her potty off and it goes flying, but she doesn't realize it and pushes herself up on and fell right in. Boy was that a shocked look on her face! Mommy got her right out and cleaned up. She hasn't been so adimant about not having the stool.

This week is a busy week. Today was the trip to the pediatrician (which meant we had to cancel speech therapy) and school. Tomorrow, she will see the nurse practitioner at the surgeon's office to have a look at her g-tube site (it still seems to be bothering her and there is a bit of blood periodically) and then she sees a Developmental/Rehabilitation specialist. Wednesday is school, Thursday is occupational therapy and Friday we should have a playdate with cousins Jacob and Michael and also go out to a barn where we may sign Rebekah up for some Horse Riding Therapy.

Sarah just loves to take Rebekah to school and play with the sensory table. She was a great trooper through all of our errands today while Rebekah was in class.