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Sunday, February 26, 2006 6:34 PM CST

We've Moved - Click here to get to our new site.

After much thought and procrastination on my part, and much persuasion and smooth talking on Mike's part, he has finally convinced me to move Spencer's page to a different site that has more picture holding capabilities and less association with the really sick Spencer that we introduced you all to here on CaringBridge back in January of 2004. I'm such a creature of habit and have drug my feet on the whole change, but I really do think it will be a better place for us now. Mike assures me that it won't be THAT different, and I'll adjust. I hope that it's a smooth move for me and for all of you. Feel free to leave your thoughts and opinions about any newness or strangeness that the new site brings. We'll leave Spencer's caringbridge page up with a link to his new page and hope that you will all follow us in our move. The new URL is www.keepupwithus.blogspot.com, and it should be a really similar feel (I'm hoping). You can still make comments and browse through old postings.

Mike has pointed out several times that the focus of the page has changed somewhat from updates on Spencer's medical crises to more balanced reports on the whole family. We will, of course, still keep everyone up to date on any and every new development in Spencer's quest for a cancer-free life. Really, I don't think much will change besides the location.

With that said, I have to end by emphasizing how much I have loved and appreciated CaringBridge. This is an amazing resource that has been such a gift to our family over the last few years. We will be forever grateful for the people who make this site possible and encourage any and every support that you can give to such a worthy cause.

Okay, here we go. See you at our new home...

Shauna

Friday, February 24, 2006 11:25 PM CST

UPDATE: (February 25th)

Thursday, February 23, 2006 1:49 PM CST

Where has this week gone? Mike is taking vacation time this week, so we've been busy doing projects around the house and having a good time hanging out. On Saturday, we went as a family to see "Curious George" in the theater. CUTE movie--Annie, Spencer, and Sophie all loved it. On Monday, we took the kids sledding to the park just south of us. There's a really good sledding hill, and the snow was really packed down, so you picked up good speed going down. The kids had a ball. It was the first time really sledding for any of them, and it was great to watch them go down the hill. We got some great pictures that I'll post soon. (We also got pictures of the kids' Valentine's rings, and we'll post those soon, as well).

Tuesday was hectic. I watched the children of some friends of my cousin who were in town from Cleveland looking at office space to open up a dentist's office. They had a six year old boy and a 15 month old girl, who was very much into exploration of everything. It was fun, but I was worn out by the end of the day. Yesterday, I got a lot done on the kitchen chairs. Now I just need to put the clear finish on 4 more of them. I'll be happy when this project is done. I'm glad that I did it, because I like how it's turning out, but it sure is a lot more work than I imagined. Mike has been a busy bee around the house. He did electrical wiring downstairs in the room he's working on. He also fixed the back hatch on the van, which hasn't worked for many, many months. It didn't go up and stay up by itself--whoever was opening it had to hold it up to get it to stay up. We've been meaning to fix it forever, and Mike finally did it yesterday. He is also fixing the lighting in the yard that got broken during the recent snow. I think he's having a good time being the handy man around the house. I know I'm enjoying it...

Also, yesterday was preschool at our house. It was the letter "X," and I had the kids make their own x-rays with chalk and black construction paper. I also showed them an x-ray of Spencer's. It was actually the very first x-ray that was taken of him when they found his tumor. You can see his whole torso--shoulders, spine, hips, and a huge black mass that fills his pelvis. I didn't point the last bit out, though, just showed them the bones so they could make their own. We also did "Xerox" copies of the kids' hands, although about half of them thought it was too scary to actually stick their hand in a copy machine. The color of the day was pink, and I had a little birthday party for Sophie while everyone was at our house. We had pink cake with pink frosting and pink sprinkles. We also had pink icecream and sang "Happy Birthday" to her. The kids all brought her little gifts and she was so excited to open everything. I think she's going to be in for a pleasant surprise when she finds out that her birthday is actually on Saturday and she gets more presents, cake, and ice cream on that day, too. I can't believe she's almost 3. Spencer was just finishing chemo when he was her age. They grow up so fast. Too fast.

Today is another busy day. I went visiting teaching this morning. In our church, all of the women 18 and older make monthly visits to a few assigned ladies so we get to know each other, get to help each other, and get to share an uplifting gospel message. After visiting teaching, I ran to the bank and the grocery store. In about half an hour, I'm heading out to go running with my friend Elise, and tonight is another basketball game for me. Mike is going to bring the kids to watch--this will be a first. I think it stresses Mike out to try to keep track of children at a sporting event, but he's being a good sport and doing it out of love for me. :0) So much going on, but all of it good.

Well, I'm off. Thanks for checking in on us.

Shauna

Sunday, February 19, 2006 10:45 PM CST

Hello all. Mike here. Shauna has been after me all week to tell the story about getting rings for the kids on Valentines Day, so here I am, and here is the story:

Tuesday afternoon I asked Annie if she wanted to come with me to the store to find a Valentines Day present for Shauna. (Yes, I waited until the very last minute to get something, and still somehow managed to come off looking good. In my defense, Shauna likes flowers, so buying ahead of time isn't really an option.) So Annie and I went to Walmart and shopped around a bit. We wandered through the jewelry area and I saw Annie's eyes light up. Now, Shauna is not big on jewelry, but Annie definitely did not inherit her mother's tastes in that department. She ogled the rings on the bargain rack for a long while and there was one in particular that she lingered on. I could tell that she was thinking more about which ring she herself would want than about her Mom, but to her credit, she didn't ask for anything for herself.

The rings she was looking at were all under $7 (Annie, I'm sure, thought they were much more expensive), so I picked three of them off the rack -- the one that Annie liked which was "gold" with some "diamonds", another one had a little butterfly made out of pink "gems", and one more that had a rectangluar blue "gem". I was trying to work it so that Annie didn't see me pick them up, but she was watching me pretty closely, and I didn't want security to think I was trying to lift them or something, so there was no way to do it without her seeing. She said, "You're getting all three?" I said I hadn't made up my mind and that we should go look around at some other things. We went and picked out some flowers and made our way toward the checkout area. She was watching me like a hawk the whole time. "Have you made up your mind yet?" "It's almost time to pay, Dad!" "We're going to have to walk all the way over there to put those back." She was very concerned.

When we got to the checkout counter, I put all three rings on the counter, along with the flowers. She looked up at me in surprise, but didn't say anything. I paid, and as we were walking out, she finally said, "You're going to give them all to Mommy?"

I said, "No... I don't think so."

"Then who are they for?"

"They're for my valentines. Do you know what a valentine is? I mean, besides being a card with hearts on it that you make for your friends, a valentine is someone that you love on Valentines Day."

She was quiet for a minute, so I said, "Who do you think my valentines are?"

At this point, I'd expected her to figure out that the rings were for her and Spencer and Sophie, but she just looked confused. :-) I said, "Who do I love?"

"Mommy?"

"Yes, we got the flowers for Mommy, right? Who else do I love?"

And she finally got it. Her face lit up and she said, "Me! And Spencer and Sophie!"

"Happy Valentines Day," I said and I handed her the ring she'd picked out for her Mom. She was pretty excited, to say the least. She gushed out her thanks and told me on the way home that she was going to save it for her wedding ring. :-) Pretty cute.

Spencer and Sophie we also very excited to get their Valentines Day presents. I made sure to tell Spencer that his was a "boy's ring" (he is very picky about that sort of thing). They've all decided that they're going to follow suit with Annie and save them to be "wedding" rings. I'm sure their future spouses will be so pleased.

So, that's the Valentines Day story. I'm not so comfortable sharing it with the whole world, because it kind of paints me as the Dad whose daughter has him wrapped around her finger, which I am... er, <ahem> most definitely NOT! Also, I am of the opinion that Shauna is already in the habit of oversharing here (did you all really need to know that I "spent the rest of the night in the bathroom sick"?), but in the interest of posterity, I have relented.

-Mike

Wednesday, February 15, 2006 5:31 PM CST

Happy Belated Valentine's Day. We had a good day. Grandma Jones came to visit and brought each of the kids a valentine and a treat. And our little neighbor friend who is Spencer's age brought valentines over for all of the kids. Mike was the big hero of the day, though. He bought me flowers, and each of the kids a valentine's ring. I'm going to make him tell the story of buying them, because it's really cute, and I can't do it justice. Anyway, the kids were thrilled, and Annie has decided that she is going to use hers for her wedding ring when she gets married because it's so beautiful. I'm sure her future husband will be very relieved that he doesn't have to worry about ring shopping. :0)

Mike and I ordered a healthy dinner in, and fed the kids early so that we could have dinner alone. We let the kids watch a movie and we had a little date. Unfortunately, Mike was allergic to something he ate and spent the rest of the night in the bathroom sick. The only thing we can guess that it may have been was the vegetables, which weren't cooked quite soft enough. Raw vegetables have started to bother him recently. It's frustrating for him, and for me, too. He has an appointment to see an allergist in May. That was the earliest he could be seen. Hopefully, she can help him a little, because his allergies seem to be getting worse. (sigh)

Today the color of the day at preschool was purple, and Spencer and Sophie were very excited about the fact. When I picked them up, Spencer said, "MOM! The color of the day is PURPLE! I told my teacher that I LOVE purple! It's the color of the day, Mom! It's my favorite color ever!" Next week, preschool is at our house, and we're going to have a little birthday party for Sophie, who turns three next Saturday. She's following in Spencer's footsteps and refusing to believe that she's really not going to be 2 anymore. And I thought it was just the parents who were supposed to wish their kids would stay little forever...

It's been snowing outside all day today. It's so beautiful! I love freshly fallen snow--it makes the earth look so clean and nice. It also gets rid of the yucky inversion air in the valley, which is a definite plus. If we could just stay inside and not have to go anywhere, I'd be happy for snow every day, I think. I don't care that much for having to drive in it, though. I'm too out of practice.

Thanks for checking on us. We appreciate your visit.

Shauna

Sunday, February 12, 2006 2:08 PM CST

Friday night, we had all of the local Jones cousins over for the evening while their parents went out on much deserved dates. The kids had such a fun time, and everyone got along so well, you'd almost not have guessed that there were 12 (yes, 12) kids under the same roof.

Saturday was a productive day. I went running with Joy's sister, Elise, in the morning, and then got a lot done around the house the rest of the day. Mike worked on the basement and is almost finished framing a room. Annie and I went on a date to the craft store and she picked out a little fake bird, eggs, and nest. ("They'll keep Henry company if we are ever gone from the house. Parakeets are social birds, Mom. Henry needs company all the time.") She also bought a birthday present for Sophie, and is very excited about it. She was especially proud that she used her own money, and I let her go solo with the check-out clerk. It was a good lesson in counting money, which we've been working on in school lately, and she thought it was the coolest thing ever to get a receipt of her very own. I think she'll end up putting it in her journal for safe-keeping.

Today, Sophie woke up not feeling great. She just got up for the day, around 1:00pm, and is trying to eat some breakfast. It seems like just when she starts to really grow, she gets sick and loses any weight she may have gained. I don't know what's wrong with her for sure. She has a little bit of a stuffy nose, but mostly she's just lethargic and not quite herself. Hopefully it will pass soon.

This afternoon we are heading north about 45 minutes to Roy, UT, to visit Mike's brother, his wife, and their cute daughter. The kids are excited to play with baby Sierra, and Mike and I are looking forward to the visit with Aaron and Kristin. Tomorrow, I'm going to try to make some more progress on the kitchen table and chairs. I got about half-way done last week and ran out of steam. I'm hoping to finish up this week.

Thanks for stopping by.

Shauna

Thursday, February 9, 2006 8:26 PM CST

My Aunt Chandra and cousin April came to visit today, and the three of us had a girls' lunch out. It was nice to catch up with them, and we even got a little scrapbooking done.

Later this afternoon, Annie said, "I think I'd like a baby sister." I said, "Uhhhh, what about Sophie?" She sighed. "Yeah, but she's getting kind of old. I think I need a NEW baby sister." I said, "But, don't you remember that I get very VERY sick when I have a baby in my tummy?" Without missing a beat, she said, "Yes, but I'd make you lots of cards and take good care of you. I'm going to my room to think up some good baby names. If it's a girl, I think I'll call her Shylit, but if it's a boy, I don't know. I'll go think about it." She wants me to bring it up with Mike and get back to her... :0) Do you think a dog might pacify her?

Our good friend, Briana Roehling, is training for a triathlon in May with Team in Training. They raise money for the Leukemia and Lymphoma Society. She is the one that organized the Christmas party for Spencer and other cancer kids a few Christmases ago, and she is always looking for ways to help and uplift families facing cancer struggles. She has been a great support to our family, and if you would like to support her in her fundraising efforts, you can donate online by going to www.active.com/donate/tntctx/BrianaRoehling. I'm sure she'd appreciate every little bit she can get.

Life is good. We are not overly concerned with the latest glitch in Spencer's scan results (or trying not to be overly concerned, at least). I've learned that it does no good to worry about what might be, and worrying makes you miss out on what is good right now. It's easier in theory than in practice, but I think I'm getting better at it little by little. The kids are growing and learning by the day. They weighed and measured Spencer at the hospital on Tuesday, and he is back up to the 90th percentile on height and the 80th on weight. Before chemo, he was at the top of the charts, but coming off of his year of treatment, he sat around the 50th percentile for quite a while. It's good to see him making up for lost time. He's so cute and such a sweet, tenderhearted boy. Annie is getting to be a better reader all the time, and Sophie and Spencer have both decided to follow in their big sister's footsteps and have become art lovers. They'll sit and color for hours on end. Sophie is especially meticulous, and will cover every square inch of her paper with solid color. It's so fun to see them all thriving and enjoying childhood like they should.

Thanks for stopping by. We appreciate your continued prayers for Spencer and are very grateful for the support you continue to show our family.

Shauna

Tuesday, February 7, 2006 5:44 PM CST

Well, we're finally home. It was a super long day, but we survived it. We left about 9:00 this morning and got home just a few minutes ago. Getting Spencer's iv in was a big, bloody mess. I don't know WHAT the deal was, but it was not done very well. He was screaming in pain, and it took forever, and they had a hard time taping it because the blood all over made it slippery. They finally taped it, only to later rip the tape off to retape it. It was not a happy time, and we were not happy with how it was handled. They also didn't warn us when they were giving him his iv sedation. I was standing, holding him, sitting up in my arms and thought he was getting his contrast fluid, when he just went limp. I caught his head and said, "Did you just give him sedation?" "Yeah," the nurse said, like it was not a big deal at all. I was more than a little annoyed that we weren't given any warning at all. Despite that, he did really well with the scans and was not all the way out, just very relaxed.

Next, we headed to sedation recovery. There was a little three year old girl in there who was on treatment for neuroblastoma. She was so cute, and so cranky to be waking up. It reminded me of our days with Spencer on treatment. Anyway, we finally got the go ahead and went over to the oncology clinic. We sat in the back room for almost an hour and a half before we saw the doctor. Spencer fell asleep shortly after we got in the room and slept until they took out his iv near the end of our stay there.

His scan results came back. His pelvic and abdominal scans were clear. His chest scan showed some "streaky opacities," which the doctor said usually mean some kind of infection--a cold or virus. Strange, though, because Spencer hasn't been sick at all lately. No coughs, no nothing. Just strange... Anyway, there is also a 2 mm "rounded opacity in the right upper lobe" (also in his lungs) that was not seen on the last exam. The doctor said it is probably nothing to worry about, maybe an air pocket that is filled with fluid right now. But he wants to make sure, so he scheduled a follow-up chest ct for March 23rd. As unexcited as we are to have to go back there any sooner than absolutely necessary, it will be good to follow up so that we can feel certain about this latest spot.

So, there it is. We're glad it's done and we're back home. Thanks for your prayers and thoughts on Spencer's behalf today. We are thankful for all of you.

Shauna

Sunday, February 5, 2006 9:51 PM CST

Not much new here. Church was less eventful than usual, which was nice. Sophie loved nursery, as usual. She is so good at church, and we are so grateful that we haven't had to fight all three kids all along. Spencer still had one minor meltdown, but he is improving, slowly but surely. Annie did perfectly, and I think she is settling into things better. Although, yesterday, she did have a minor meltdown of her own, for no aparent reason. I asked her to do something, and she burst into tears saying that she wanted to go back home to Texas and she didn't want to stay here anymore. She wailed, "It's fun to see my grandmas and grandpas and cousins, but I can't stand it, being away from my friends! I want to go home!" So, I guess she's not fully adjusted, but she's getting there.

Oh, and last night, Mike had a violent allergic reaction to praline icecream. He's always known that he is allergic to pecans, but he loves pralines and cream icecream, and in the past it hasn't bothered him to eat it. I think there is usually a small enough amount of nut that he's okay. We got a different brand this time, though, with larger nut pieces, and he was NOT okay. Poor guy was really, really sick all night last night. I need to renew our Epipen prescriptions soon. Too many allergies in our family to not have them handy!

Tuesday is scans. I feel confident that things are still fine, but going through the actual process of checking to make sure everything is still fine is more than a little unnerving. I'll be glad when it's over and done with for another three months.

Tomorrow morning, my aunt is coming to scrapbook with me, and tomorrow night, Mike and I are going to dinner with friends. The weather has been cold, but not in the single digits lately, for which I have been truly grateful. Yesterday, I went on a run with my friend, Elise, and it was pretty nice running weather. I think a cold front is supposed to be coming, though, so we're bracing ourselves.

Thanks for checking on Spencer. Please keep him in your prayers on Tuesday morning for scans. It's always such a trauma for him, I wish there were some way to make it more pleasant, but so far we haven't found anything that makes swallowing loads of contrast fluid fun. If only Allie were here to entertain him...

Shauna

Thursday, February 2, 2006 11:53 PM CST

It was a good day. Annie and I got two of the six kitchen chairs finished. I'll post a picture when we are all done. She had a good time sanding. Spencer and Sophie entertained themselves by playing "naughty guy," a game where one sibling is naugthy and runs around growling at the other. It's a pretty fun game, if you ask my kids. I'm telling you what, those kids have such vivid imaginations! It's really quite entertaining to live in the same house with them.

We had dinner with Mike's parents tonight and had a really nice visit with them. Annie somehow finagled her way into a sleep over with Grandma and Grandpa tonight. She was very excited to stay, and I promised to come pick her up in the morning, our little Miss Independence.

I played basketball again tonight, and our team won. It's fun to get out there and play again--it's been a long time since I played regularly.

Tomorrow night, Mike and I get to go on a date together! We've worked out a system with Mike's brother and sister and their spouses to trade off babysitting the cousins for each other to give ourselves nights out and to let the kids play together. All the cousins are going to Uncle Todd and Aunt Melissa's house tomorrow night, and then they'll all come to our house the next weekend, and so forth, so each couple gets two dates for every one night of babysitting. I'm excited about the idea and hope it's a success.

We were reading a book today called "Oliver's Story: for 'Sibs' of Kids with Cancer." It's a children's book about Oliver's sister getting cancer and all that they went through as a family. At the part where his sister's hair falls out, I said, "Spencer, do you remember when your hair fell out?" "Nooooooooooo," Spencer replied, incredulously, like I was making up the most preposterous tale he'd ever heard. Annie piped up, "Yes, Spencer, remember when you didn't have any hair?" He didn't believe us until we pulled out the bald pictures and showed him. I think that refreshed his memory a little bit, but I really think that his memories of that year are fading. I mean, it started half his lifetime ago. He was only two, and he has had hair for a year now. That's a big chunk of his life ago. He still remembers Jennifer, Allie, and Dr. Sharp, and as long as we can keep those memories in his mind, I really don't mind if he forgets all of the bad stuff that happened.

Sometimes I just look at my children and marvel at what miracles they are--all of them. I think cancer helped me to do that better. When you realize all of the things that can go wrong, you become more grateful for all of the things that miraculously go right. We focus a lot on the miracles in Spencer's life, but each of our children is a miracle in their own right. It's a very humbling career we have as parents, and I feel so lucky to be part of their lives.

Thanks for stopping by.

Shauna

Wednesday, February 1, 2006 10:28 PM CST

Another fun day at preschool for Spencer and Sophie. The letter of the day was "U" and they did some cute activities with umbrellas at Aunt Melissa's house. While they were there, I headed to Lowes and bought some paint and sandpaper. I'm redoing our kitchen table and chairs. Mike is a little nervous, but he's exercising a lot of faith in me and giving me free reign with my latest "bee in my bonnet," as Mike so lovingly calls my home improvement projects.

Tonight we had our good friend Ben and his partner John over for dinner. Ben and Mike were friends in high school and Ben was the best man at our wedding. We hadn't seen him in way too long, and it was nice to get to visit and catch up a little and to meet John.

Spencer has become quite the negotiator when it comes to getting what he wants. When we tell him it's time for bed, he says, "FIVE more minutes, PLLEEEAASSEEE!" Then, after 5 minutes, he says, "Okay, TWO more minutes? One more minute?" As he was heading off to bed just now, I heard him ask Mike for a marshmallow. Mike said, "You can have TWO marshmallows." Spencer's quick reply was, "How about FIVE marshmallows?" He's getting pretty good, I'll give him that.

Well, I'm beat. Time for bed. Thanks for stopping by. All is well with the Joneses, and we are truly grateful for that blessing.

Shauna

Monday, January 30, 2006 11:39 AM CST

We had a good weekend in Idaho. We were planning on coming home on Saturday, but there was a big snowstorm, and so we couldn't leave until Sunday. We went to church with my parents and then headed home in the late afternoon. As we walked in our house last night, the phone rang. It was Allie. Spencer, Annie, and I had a good time chatting with her. Annie is a speaker phone favorite at Allie's house, apparently, because Annie enjoys reading books and singing songs over the phone, so it's cheap entertainment for everyone. :0)

Sophie has a new hobby. She has taken to carrying around the step stool from the kids' bathroom. She sets it down at random places and stands on it. In the middle of the living room, the bedroom, the kitchen, wherever. I think she just wants to see the world from a different vantage point. It's funny to see her set the stool down, climb up on it, look around, climb down, walk a few steps, set the stool down, climb up on it, etc. I think we need to get another stool, because when Spencer goes to use the bathroom, or wash his hands, he can't, because the stool is missing. Maybe that's what Sophie will be getting for her birthday...

Thanks for stopping by.

Shauna

Friday, January 27, 2006 10:02 AM CST

We're heading up to Idaho to get Annie this evening. It's been a long week without her, but I'm glad that she got to have this experience, spending the week with her grandma and grandpa.

I just got a call from the Endocrinologist's office. There is not significant change in the nodules on my thyroid from last year's scans, and my thyroid levels are normal. So, I get to skip any needle biopsies or surgery this year. Yea! The doctor has suggested that I may want to go on synthetic thyroid medication to suppress the actual thyroid production to discourage any further growth. I'm still debating on that one, but for now I'm just going to keep doing what I'm doing. I have a follow up blood test the end of March. Thanks for your thoughts and prayers on my behalf.

Spencer's next scans are scheduled. February 7th will be his 15 month off-treatment CT scans at Primary Children's. He's a little grouchy about having to go back to that hospital at all, but at least we only have to go once every three months.

We have a little caringbridge friend who could use some thoughts and prayers. Spencer Griffin has relapsed for the second time with rhabdomysarcoma. He was diagnosed for the first time at 15 months old, and he's Annie's age (6 1/2), so he has been a survivor for a long time. If you have a chance to stop by his web page and add some encouraging thoughts to his guestbook, I'm sure his family would appreciate it.

Thanks for stopping by. Have a good weekend!

Shauna

Monday, January 23, 2006 11:12 PM CST

On Friday, we drove up to Idaho to get our van, and we dropped Annie off to spend the week with my mom and dad. She's having a wonderfully fun time and not missing us in the least, but the rest of the family is going through Annie-withdrawals. Sophie had to call and talk to her about 5 times today, and Spencer keeps asking, "Is Annie coming home now?" She certainly keeps life in our family interesting. Grandma is teaching her to sew, and she has already made a pillow and two little blankets. She thinks she is so grown up, and keeps telling my mom, glowingly, "I have SEVEN clothes, cause I get to stay for SEVEN days! That's a long time!" She had her cousin Abigail spend the weekend with her at Grandma and Grandpa's. Abby is 7, so they are close in age, and they have a good time together being giggly and girly. Today, another cousin, Connor, came and spent the day playing with her, which also made life fun. I'm glad that we live close enough for her to get to do things like this now. It's good for kids to know and spend time with their grandparents.

So, in Annie's absence, Spencer and Sophie have been a little lost, but they are good little friends and have entertained themselves really well all day. Spencer's new favorite thing is to have me stick his favorite blanket in the dryer for a few minutes so that it gets toasty warm. Then, I wrap him up in it, along with another "insulation blanket" around the outside to keep the heat in. He loves it. He giggles and giggles as I run from the dryer with the hot blanket in my hands and wrap him up all snug and warm. Sophie has now caught on, so we do her blanket, too. For the past two nights before bed, we get their blankets heated up and then they run to their beds and Mike and I bundle them up in the hot blankets and they snuggle down to sleep. It's pretty cute, and makes me laugh every time I see Spencer get so excited about it.

Spencer has developed a love of swords and knights. I have no idea where it came from originally, but the knight's armour and sword that he got for Christmas has just fanned the flame. We have a picture scripture book, and he loves all of the stories that have swords and battles in them. Tonight, Mike was reading to the kids, and Spencer said, "I want a sword story!" so Mike found a scripture story that had swords in it. He said, "Not all scripture stories can have swords in them, Spencer." I don't think Spencer really believes him, though. We got a cartoon about Camelot from the library, and he has figured out how to turn the movie on all by himself, so I've come out into the living room at random times during the day only to find him curled up on the couch, toy sword in hand, watching the "sword movie," as he calls it. (sigh) He's such a boy...

Tonight was family home evening--Monday nights are set aside as a time to spend at home with your family in our religion. It's a nice chance to just hang out and enjoy each other's company. We have a gospel-related lesson, then a fun activity and refreshments (which is everyone's favorite part of the evening). Tonight for our activity, we let Spencer choose a game to play, and he chose Check-up Charlie. Now, I'm sure that's a very fun game, but we are missing about half of the pieces and none of us really knows how to play in the first place and we can't find any instructions, so it just ends up being a free-for-all of the kids taking Charlie's temperature and looking in his eyes and ears for "buggies." If anyone knows what the real object of the game is, feel free to enlighten us. I guess it doesn't really matter that we don't know what we're doing, because it's one of the kids' favorite games anyway. Spencer asks for it whenever we play games. I think he must relate to Charlie. :0)

Well, I need to get to bed. I'll have two little alarm clocks getting me out of bed early tomorrow morning, I'm certain. They always make sure I don't miss much of the day past sunrise. Gotta love 'em. Thanks for stopping by.

Shauna

Sunday, January 22, 2006 5:50 PM CST

The day that Spencer was diagnosed with cancer, he was vomiting every 20 minutes or so all day—and we were cleaning it up every 20 minutes or so all day. He’d had red Gatorade with contrast fluid for his scans and he had vomited red all over my shirt and pants, which I sat in for another 9 hours or so before I ever made it home to change. We sat in the surgeon's office while he told us that Spencer had a tumor that looked malignant. We went straight from there to Registration and straight from there to his hospital room in the oncology wing. There, we had a stream of nurses and doctors flowing in and out of the room regularly, and there were papers to read and sign and literature to go over, and phone calls from family and friends wanting to know what was going on, and no private moments whatsoever. I remember Mike and I saying to each other, "When do we get to cry?" There was literally no time for it then. We were never alone and never felt that we had the luxury of a sobbing breakdown in the middle of so much fast paced medical stuff going on. Then, he was having surgery. Then he was having chemo. Then he was having daily radiation. Then there was always something and we were so busy I assumed that the moment of breaking down had passed. I was wrong....

It happened today after church. Two years later and it hit me like it was happening to us all over again. And it wasn't just the cancer. It was the 2 weeks he spent in NICU at birth on a ventilator, with a chest tube in under his arm because of a tear in his lung, and the wires and the tubes and the monitors. And it was not being able to touch him or hold him or feed him during that time. And it was the sensory integration dysfunction that made him scream and hate touch and recoil at hugs and kisses and music and lights, especially the first few years of his life. And it was the physical therapy, and the speech therapy, and the occupational therapy. And THEN it was the cancer and the chemo and the hospital stays and the radiation. It was every single thing that has tried to rob this sweet little boy of a normal childhood and chance at life. And I cried and I cried like I haven't cried in a long time. And I don't think I'm done.

As a parent, you think your baby will be perfect. Don't you? You have a whole heap of dreams and visions of what your child will be able to do and be, even if they aren’t thought out in great detail. You just know that your child is capable of greatness. When Spencer was born and couldn't breathe, it was a real eye opener to Mike and I that we were not guaranteed a child with perfect health. We began hoping and praying for a child that lived. I sometimes fear thinking too much about Spencer's future. I no longer have many expectations of what I think his life will be. I'm just grateful for his life. It's hard as a mother to let go of your expectations, though. I know that the Lord has a plan for Spencer, and although I don’t know how closely it resembles my original plan for him, I trust that God’s plan is better than mine and I will watch with great interest to see what He makes of Spencer’s life. I know that Spencer is here for a reason and that his life will be more than I ever dreamed it would be.

That doesn’t make it much easier to watch him struggle, though. He struggles with church—with groups of people in general. He gets sensorially overwhelmed by too much noise and motion. I remember when he first started chemo at the clinic in Austin, I was afraid that people wouldn’t like him, because he screamed all the time and didn’t want to be touched or talked to or looked at. I knew that he was a sweet, kind, gentle boy, but I was afraid that no one would be able to see past his difficult 2-year-old exterior. It meant more to me than I can ever say that Jennifer and Allie loved him so much. They saw him for who he was despite his challenges, and they loved him. And I will love them forever for that. I was always a little surprised, and a lot grateful, that Spencer was loved so much at that hospital. He sure was cranky to a lot of people, and yet they loved and spoiled him anyway. I’m so thankful for those people who see Spencer the way I do--as a special little guy who is doing his very best despite some very difficult circumstances.

One of my favorite quotes from "Lord of the Rings" comes when the hobbit Frodo is lamenting to the wizard Gandalf that he has to be the bearer of the evil ring that must be destroyed. Frodo says, “I wish the ring had never come to me. I wish none of this had happened.” Gandalf wisely replies, “So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.” Every time I hear that quote, I think of Spencer. I wish I could shield him from the struggles that I know he still has ahead of him in his life, but I know that I can’t. I said to Mike, in the middle of my sobbing today, “If ONE thing could have gone right for the poor kid-—just ONE thing!” Mike said, “He has a family that loves him. That’s one thing.” And he’s alive. And he also has a host of other people who love him and care about him, and I have a feeling that that will make a huge difference in his life. Thank you for loving Spencer. Thank you for following him on his journey through life. We can all watch together as he does great things. Thank you for your love and support, and thanks for checking on us.

Shauna

Wednesday, January 18, 2006 9:40 PM CST

New Photos Added

This morning, Annie and Sophie had an argument, and both were moping in opposite ends of the house. I was in the kitchen, and Spencer walked in, very concerned. "Mom, my girls are sad." I found it pretty cute. Our little man.

Today was preschool at our house. The letter of the day was "S" and we made snowflakes out of marshmallows and toothpicks. About half of the kids ate their snowflakes before their moms came to pick them up, but they had fun. It also SNOWED during school, which was a great little extra "S" lesson for the kids. Spencer and Sophie love school and get so excited about going--I'm glad that we're doing this for them.

This afternoon, one of my friends from high school came to visit. I hadn't seen her in YEARS, but she was visiting her mom in Provo (south of here), and so she called me and came over with her two cute kids. We played basketball together in high school and were good friends, but we haven't kept in great touch since, so it was so nice to sit and visit. The kids loved playing with her 2-year-old daughter, Maddie, and I enjoyed having an adult conversation in the middle of the day in the middle of the week. (Thanks, Alicia!) She lives about 4 hours from us now, in southern Utah. Hopefully we'll keep in better touch from here on out.

The van should be done this Friday, so we'll head up to Idaho to pick it up. Tomorrow night is my first basketball game for church women's ball. I'm sure I'm VERY rusty, but it will be fun to get out there and play. Tomorrow morning is my ultrasound and blood work at the hospital and tomorrow evening is Annie's last swim lesson. I think we'll sign her up for another session; she has enjoyed it so much. (I've enjoyed her willingness to get her school work done so that she can go swim). Spencer and Sophie have a big day of playing together planned for tomorrow, so I'd better go get them in bed pronto. Thanks for stopping by.

Shauna

Monday, January 16, 2006 11:42 AM CST

**NEW PHOTOS ADDED**

UPDATE: (January 17, 2006 3:30pm) Well, we got an estimate on the van, and it looks like it could end up costing $2500 to get it fixed. (sigh) My appointment went well yesterday, but the doctor didn't run any of the tests. I am scheduled at Cottonwood hospital on Thursday morning at 11:00 for the ultrasound (I'll get blood work then, too), and then the results could be a few days after that in coming. I'll be glad to be done with it for another year...

We had an interesting weekend. We should have just stayed home in our beds with the covers pulled up over our heads. Hind sight is 20/20, right? Instead, we drove to Idaho to visit my parents and our transmission died on us about 30 minutes outside of my hometown. It was about 10:30 at night, the kids were all sound asleep in the back, and there weren't a lot of people on the road. And it was really, REALLY cold. Luckily, a family friend found us and helped us get a tow into American Falls (the nearest town). Unluckily, no one was in town to look at the van all weekend. My dad came and got us and took us the rest of the way to their house, and they very generously loaned us their car to drive home yesterday. I have a doctor's appointment this afternoon that I had to schedule 2 months in advance and really didn't want to have to reschedule. Hopefully we'll get a price estimate on the van today, and then when it's fixed we'll head back up to Idaho to pick it up.

The weather also decided to turn foul yesterday, so we were lucky to make it home in one piece. The roads were terrible in the Salt Lake Valley, and we saw two near-accidents right in front of us, both miles within sight of our house. It was crazy weather. We had to leave earlier than planned because of the storm, so we didn't even get to catch up with my sister from New York, which was too bad. Of course, it was the weekend of the 2 year anniversary of Spencer's cancer diagnosis, and the one year anniversary of our fiasco return-flight from our Make-a-Wish trip to Disneyworld, so we should have seen SOMETHING coming, I guess. We are praying that the car isn't too expensive to fix. We're still recovering from buying a new house and replacing all of the carpet. (sigh) I guess there's always something, right?

My doctor appointment today is to get my thyroid levels checked and to get an ultrasound. It's an annual thing, since I have nodes on my thyroid that have, thus far, been benign, but still have to be checked once a year. It always makes me just a little bit nervous. I've already had surgery to remove nodes and parts of my thyroid twice and I really don't want to have to repeat that any time soon. Wish me luck.

Thanks for stopping by. We are doing well and will be doing even better when we have our own car again. When things like last weekend happen, I just say to myself, "At least it's not cancer!"

Shauna

Thursday, January 12, 2006 9:53 PM CST

What a long day! Spencer was very hungry and very cranky this morning about the fact that he couldn't have any breakfast like the REST of the family. Luckily we got a call that the boy scheduled in front of Spencer had eaten and was therefore off the schedule, so our check-in time got moved up to 11:15. So, Spencer and I left around 10:30, got there on time, and got Spencer back into surgery around 1:00. Surgery took about an hour and a half. Dr. Jason (Spencer's dentist)went to cap the front, chipped tooth and it was very loose and came out. The root had decayed away and there was nothing left holding it in place. So, Spencer lost his first tooth and he has the same grin as Annie. He got two other teeth capped and some cavities filled, and his teeth sealed. He was not a happy camper for most of the day. It was pretty draining all in all. Spencer was so distraught to be there and kept crying over and over, "I want to go home. I want to go home. I don't want to be here. I want to go home." He didn't want anyone to touch him and he was screaming when he was taken off to surgery, and he woke up crying. Not a fun time, although we had an incredible Child Life girl named Karen who worked wonders with calming him down for a short time, and who gave him his own "Mr. Buddy" (a rag doll in a hospital gown--Spencer got to draw his face and hair and then got to give him an iv and do doctor stuff to him, i.e. listen to his heart and lungs, look in his ears and mouth, etc.).

We finally left Recovery around 4:00pm, and stopped at Mike's mom's house on the way home to drop off some stuff. Spencer got some TLC from Grandma Jones before we headed on home, JUST in time for Mike to head out again to take Annie to swim lessons. They got back JUST in time to have the Elder's Quorum Presidency from church come by for a get-to-know-you visit. I'm exhausted. It's been a really long day, and I'm glad it's behind us. We have to give Spencer's mouth 4-6 weeks to heal and then we can have a false tooth put in if we want to have a tooth in the gap. It will be a couple more years before he gets a permanent tooth, but the dr. said it wouldn't affect his permanent teeth coming in at all, so it's our choice as to whether we want to put a tooth in or not. I think we'll see how it goes for a few weeks and see if we and Spencer want a tooth in there and go from there.

We may be heading up to Idaho tomorrow afternoon. My sister and her husband are flying in from New York and we want to get to see them while they're on this side of the U.S. It's been a long time. It will be good to see her again.

Well, I'm beat. I'm off to get some children and some parents to bed. Thanks for checking on us.

Shauna

Wednesday, January 11, 2006 2:05 PM CST

UPDATE (3:24pm) Primary Children's Hospital called and, frustratingly, Spencer's check-in isn't until 12:30 tomorrow afternoon, and surgery isn't until 2:00! He's gonna be SOOOOO hungry and crabby by then--you mark my words! He can't have any food after midnight tonight. Does that sound crazy to anyone else around here?!?! He's FOUR! (sigh) Not a lot we can do about it, though, so I guess we just grit our teeth and bear it. I'll be really glad when this is behind us, that's for sure.

Joy's here! She called yesterday to say that she had a funeral (her cousin's mother-in-law's) to attend in Utah, so she and Kenneth and Daniel and Caitlin came up from Vegas. The kids are playing here while Joy attends the funeral, and then she'll come back here for some visiting before she heads back. Sophie was bouncing off walls last night when she heard the news. The only way we got her to go to bed was to convince her that Joy wouldn't arrive until AFTER she had slept. She kept screaming, "JOY-JOY'S COMING! JOY-JOY'S COMING!!!!"

Spencer and Sophie had preschool today, and as we were driving back home, Spencer started a very interesting conversation that went something like this:

Spencer: Mom, we used to live in Texas.
Me: That's right. We lived in Texas.
Spencer: Now we live in Utah.
Me: That's right.
Spencer: Five people live in Texas: Allie, Jennifer, Dr. Sharp, God and Jesus.
Me: Um, no, honey, Jesus lives in heaven.
Spencer (very matter-of-factly): No, Mom, Jesus lives in Texas. Daddy said so.

Now, I'm pretty sure that's not a direct quote from Mike, but nonetheless I found it pretty entertaining. That's my little Texan. I'm sure if you talked to most Texans they'd tell you that Texas IS Heaven (right, y'all?). Very cute.

We should get a call at some point today giving us a surgery time for tomorrow. I'm hoping for another early check in so that the fasting doesn't become unbearable. It will be so nice to have that done and out of the way.

Yesterday morning Sophie woke up vomiting, and continued throwing up every 10-15 minutes for the next 3-4 hours. Then it went away and she has been fine since. Weird. No fever, no other symptoms, and then gone. Weird.

The temperature is dropping again, and we have a chance of snow tonight. It's been pretty warm, for Utah, the last few weeks. The kids will be thrilled, but I'm hoping for clear roads for our trek to the hospital tomorrow. Maybe a happy medium--little snow, clear roads? We'll hope.

Thanks for checking on us.

Shauna

Sunday, January 8, 2006 8:43 PM CST

Another battlefield event at church today. I substituted as the pianist in Primary (the children's meetings), and a good time was NOT had by all. Spencer had a hard time not being right next to me and so he cried a LOT, and both Annie and Spencer at one point or another ended up sitting in the corner on the floor by the piano because they were in tears. Spencer threw a HUGE tantrum out in the hall during his class time, which neither Mike nor I could properly address because I was playing the piano and he was teaching a lesson. It was frustrating to say the least. We had another big talk when we got home about church etiquette and both kids promised to behave better next week. Let's hope so...

Thanks for the encouragement on the journal writing. I appreciate your thoughts. Eventually, I may end up moving the journal to another blog site, and leaving a link on this page to the new site. But for now, I think I'll continue to use Caringbridge, as it's convenient and user friendly.

This coming week is Spencer's rescheduled dental surgery at Primary Children's Hospital. Let's all pray that he stays healthy and well and we can proceed without further delay. It will be really nice to get his mouth taken care of. He's really excited about going to the hospital to have his teeth worked on, too, for some unknown reason. But, we'll take the enthusiasm without complaint.

And, in other enthusiastic news (I'm enthusiastic about it, at least), Mike and I registered for a half-marathon here in Salt Lake City in June. This will be Mike's first big race, and I think he's mostly doing it to humor me, but I'm very excited to run with him. We used to go running together when we were dating and first married (pre-children), but it's been a long time since we've been running partners, and I'm really excited taking it up again.

Well, I need to go get some children ready for bed. Thank you for visiting and for continuing to care what we do. It means a lot to us.

Shauna

Thursday, January 5, 2006 11:40 AM CST

I just have to start by saying HOOK 'EM HORNS! Now, I can just hear some of you out there reading this (my parents included) who are saying, "Hook 'em what? What does that mean?" For those of you who just had that thought, just ignore the first paragraph and read on--it's a Texas thing. But at the same time I can hear all of my Texas Longhorn friends cheering and singing their own rendition of "The Eyes of Texas." YEEHA! Go HORNS!

We are doing well. Annie decided last night that we haven't been celebrating enough these days, so she got up after everyone was in bed and decorated the kitchen for a party, and left little gifts by everyone's beds. It was pretty cute. So, Happy January 5th, everyone!

Speaking of Annie, last night I overheard her telling Spencer and Sophie stories. She was telling them a scary, made-up tale of pirates and oceans and such. After she finished, Spencer and Sophie were commenting, "Wow!" and "That's so scary!" Then, Annie said, "Do you want to hear another REALLY scary story?" Spencer and Sophie agreed, and then Annie warned, "Okay, but I'm warning you, after this story, you may never want to sit in. . . a high chair AGAIN!" She paused dramatically and then began, "When I was just a little girl, maybe 2 or 3, we had a babysitter and I was sitting in a high chair and it TIPPED OVER!" I had to run into the other room so that I wouldn't start laughing within hearing range. She has told us this story for years, although Mike and I have no evidence that there's any truth to it. She's convinced that when she was little, her high chair tipped over, and the babysitter told us when we got home how scary it was. Neither of us recall any such event, but we can't convince Annie that it isn't true. And when Annie gets an idea in her head, there's not much hope of changing her mind EVER. It does make for a pretty terrifying tale, though, you have to admit! :0)

Yesterday was preschool. We held it here, and the kids had a great time, as usual. The letter of the day was "Q" and we read "The Quiltmaker's Gift," which we got as a Christmas present from Allie and family. Tuesday was Annie's first night of swimming lessons, and she had a ball. She has another one tonight. It's been good leverage to get her to do her homework, which is a good thing.

Life just keeps moving on, doesn't it? Next Saturday is the 2 year mark of Spencer's diagnosis. Looking at us now, no one would ever guess that we went through anything like what we went through. We don't talk about cancer every day. We don't even think about cancer every day (well, that's probably not true--but it's no longer the terrifying, keep-you-up-at-night kind of thoughts that we used to have). Spencer is growing up and, so far everything is looking good. Besides an extensive dental visit coming up, we really haven't seen a lot of side effects from the chemo and radiation yet, which is encouraging.

I think we are all slowly healing emotionally, too, although Mike and I agreed that we are having a little "after-the-crisis crisis." I think the technical term for it is post traumatic stress disorder, but mostly it's just hard to absorb all that has happened and all the changes that our family has gone through in the last few years. Life is now calm enough for everything to register and really sink in. But, we are doing well, and life is good. Caringbridge has been an amazing resource for us over the last few years. I've been debating about whether or not I should keep journaling here. Life is blissfully boring these days, so it's not the necessity it was in the past. But part of me wants to continue so that others can see that there IS the occasional happy ending to the journey that starts with "Your child has cancer." When Spencer was first diagnosed and I found Caringbridge, I hunted all over for a success story, for some ray of hope in our then very dark and dismal world. And I couldn't find one. Now I know it's because those people were moving on with their lives, but it would have been such a strength to me. I don't know--I'm still considering everything.

Thank you for stopping by. Thanks for supporting our family this long. So many visits here in the last almost-2 years. It's very humbling for us to realize the amount of love and compassion that has been poured out on us over the last few years. We are thankful for all of you for your visits and words of encouragement and support in the guestbook. They lifted us too many times to count. Thanks.

Shauna

Tuesday, January 3, 2006 11:41 AM CST

Happy New Year! We had a fun New Year's Eve, celebrating with my parents and my mom's cousin and his family. Annie fell asleep about 10:30, Sophie around 11:30, and Spencer was the lone Jones kid to ring in the new year with his eyes open. In fact, we had to force him into bed just before 1:00am, and he kept protesting, "I'm NOT tired!" On Sunday, we all set personal and family goals together. Annie is old enough to really get what goals are, and she's very excited to start working on achieving some of hers.

Today we're trying to find our routine again after weeks of parties and late nights. We're excited for a new year and all of the fun and excitement that it will undoubtedly bring. We're hoping for not TOO much excitement, but knowing the Jones family, we're probably in for some of that, too.

Mike and I were flipping channels last night and came upon a doctor/hospital series called "House." There was a bald little girl in it, so we watched long enough to learn that she had "terminal rhabdomyosarcoma." Then we quickly flipped the channel again. I hate cancer. Even in fiction, it's such an ugly, ugly thing. In real life it's worse.

Well, I'm off. Annie wants to take swimming lessons, so we're going to head down to the rec center to check out their schedule. Wish us luck with that. Thanks for stopping by.

Shauna

Wednesday, December 28, 2005 10:59 AM CST

We've had a good vacation. On my birthday, Mike made me breakfast in bed, and then Annie and Mike played "hot and cold" while I searched the house for my presents. Mike and I went to see "The Lion, The Witch, and the Wardrobe" at the theater while the kids played with Grandma and Grandpa Jones. Finally, Mike made his famous sweet and sour pork for dinner. (He lived in Hong Kong for two years and learned to make authentic Chinese along the way). All in all, it was a very relaxing, fun way to become a year older.

Christmas Eve was spent at Mike's parents' house, surrounded by almost all of the Jones cousins (Mike's brother Todd and his family were vacationing in sunny Vegas this Christmas). Santa came that night, and ate all the cheesecake that Annie left for him. His reindeer ate almost all of the carrots that Annie left for them, but they did make something of a mess of grass and carrots by the deck door. Silly reindeer! Santa was more than good to us, and Annie keeps reminding us that it was the "best Christmas ever!" We went to church Sunday morning, and then spent the rest of the day eating candy and playing with our new toys. (Well, at least that's what the kids did--Mom and Dad snuck in a nap in there, too).

Last night, Mike's brother Ryan and his wife Malissa came over for tacos and game playing. We had a good time. Tonight is a Christmas party/reunion for Mike's high school friends, and the whole family is invited. I'm really impressed at how well his group of high school friends has kept in touch. On Friday, Mike and I are doubling with his brother Aaron and his wife Kristin to celebrate the women's birthdays (it's Kristin's today! Happy Birthday!). Also on Friday, my parents are flying back in from New York, and will be staying to celebrate New Year's with us. So much partying, so little time.

We hope you are all enjoying your holidays. Merry Christmas!

Shauna

Saturday, December 24, 2005 11:00 PM CST

***New Photos***

Mike here. I'm posting a copy of the Christmas letter that we sent out this year, along with our new family picture (taken yesterday). Some of you received this in the mail-- if you didn't, it's because we didn't have your address. Merry Christmas, everyone.

Thursday, December 22, 2005 10:05 PM CST

UPDATE: Mike here. Since Shauna has "kindly reminded" me that that I'm not pulling my CaringBridge weight around the house, here is my contribution:

Monday, December 19, 2005 2:46 PM CST

The fun times just keep on rollin' here at the Joneses'. Thursday night, Annie started complaining about her ear, and on Friday, after she had her last cavity filled in the morning, and after Mike went and had his teeth cleaned and checked in the early afternoon, I took her into InstaCare and confirmed that she had a raging ear infection in her left ear, along with an eye infection in both eyes. So, she's on an antibiotic, and had tylenol with codeine to get her through until the antibiotic could kick in, and has eye drops for her eyes. We're happy to report that she is feeling much better now. The eye infections are gone and the ear infection is gone as well. Just 7 more days of forcing down the nasty tasting antibiotic and it will all be just a memory.

Very late Friday night, my parents arrived, and very early Saturday morning, the kids realized it. There was lots of playing and fun, and on Sunday we celebrated my mom's birthday (she's somewhere around 30 now, right, Mom?). We had presents and cake and icecream and the kids all helped her blow out the candles on her cake. Today, Grandpa Jones also turned 30-something, and we are going to try to make it over this evening to wish him a Happy Birthday as well.

We also had early Christmas with Grandma and Grandpa Sorensen yesterday. The kids got to open all of their presents from my parents so that Grandma and Grandpa could watch their faces while they did it, and now I'm convinced that Santa really doesn't need to stop at our house after all. They got so much loot--we're stocked up! They really do spoil the grandkids rotten.

This morning, at the crack of nothin', Mike drove my mom and dad to the airport to catch an early flight to New York, to spend Christmas with my sister. Annie woke up very distraught that Grandma had made good on her word and really was gone, but she was somewhat appeased by the fact that we get to go pick up Joy, Kenneth, Daniel, and Caitlin from the airport this afternoon at 5:00. Sophie is just about beside herself with eagerness for Joy-Joy to arrive. It will be a fun time for all. Joy was going to drive, but road conditions are not very conducive to driving, so they booked a last minute flight in. Her brother's wedding is tomorrow, and then they will fly back to Vegas on Wednesday afternoon. We're all very excited to see them.

I'm off. We've all got lingering coughs, but I think we're on the mend. We're getting excited for Christmas and the new year. Thanks for stopping by.

Shauna

Thursday, December 15, 2005 8:31 PM CST

UPDATE

I have to add a quick Annie story. She got a music box that plays "Bibbity Bobbity Boo" and has been going around the house singing with it today. I have been just half listening to her, but a few minutes ago, I heard her crooning away and actually tuned in to the lyrics she was singing. "Sallacadoola, Don't be a FOOL-a, Bibbity Bobbity Boo!" I bet you didn't know those were the real words to that song, DID you!"

Yes, we're still sick. But, we're functioning anyway, barely. Mike went to the ENT this morning and got a few prescriptions and is supposed to use an oximeter (oxygen level monitor) for over-night observation. Then, he goes back in a couple of weeks for a follow-up. We'll see what happens there.

Annie and I went to the dentist this morning. I got my teeth cleaned and checked--clean bill of teeth health for me (no cavities). Annie had three of her four cavities filled. She goes in again in the morning at 9:00 to get the last one filled. It will be good to have it taken care of. Mike was supposed to go this morning, but chickened out, umm, I mean, had a very important work meeting to attend. Unfortunately for him, however, the dentist had a cancellation for tomorrow afternoon, and so he's rescheduled and doesn't really get out of anything for very long.

Oh, and some very exciting news--one of our very favorite and beloved high school seniors in the whole world has shown once again how amazing and brilliant she is. Allie got word today that she is accepted to the college of her choice--Duke University! YEEEEHA! We are so proud of her, and proud to know someone so talented and wonderful. Way to go, ALLIE!!!!!! We love you!

My parents are coming tomorrow for a weekend of fun and grandkid playing. They are leaving early Monday morning to fly out to New York to spend Christmas with my lucky older sister, and then they'll fly back in to Salt Lake in time to celebrate New Year's Eve with us. AND, Monday night, Joy and her kids are coming to spend the night with us, and the kids get to stay and play on Tuesday while Joy goes to her brother's wedding. Very fun and exciting stuff--hopefully our colds will ease up before tomorrow night. What are the odds?

Well, Annie is hacking uncontrollably. I'd better go get her some more Robitussin. Thanks for stopping by.

Shauna

Tuesday, December 13, 2005 9:47 PM CST

NEW PHOTOS ADDED

Well, now everyone is sick. We had another restless night last night, filled with the frequent sound of children coughing, and coughing some more, and then crying because they couldn't stop coughing. Ahh, the sounds of parenthood. I think I am the least sick at the moment, and I'm hoping I don't join the ranks of the really REALLY sick any time soon. Mike made a trip to the grocery store tonight to stock up on medicines and a humidifier. He apparently over-stocked-up on sudafed for us and the kids, and at the check-out counter the girl told him that it was federal law that he couldn't buy more than three sudafed items at a time. The conversation went something like this:

Check-out girl: You can only buy three sudafed items, cause they contain...(searching for the word)
Mike: psuedoephedrine?
Girl: Right. And they use that to make...(searching for the word again)
Mike: (Looking confused, and then suddenly horrified) METH?
Girl: Right, meth.

Now, don't ask me how he knew that, or came up with it in the middle of the grocery store while he was caught buying too much psuedoephedrine, or how he managed to escape without her calling security after a conversation like that, but somehow he did, and we now have only two adult boxes of sudafed and one children's sudafed bottle, so we are legal and not starting a meth lab anytime in the near future.

I'm hoping the sickness passes soon. It's hard to feel very Christmas-spirited when you feel lousy and everyone around you does, too, but we are hoping to be able to actually leave the house for more than doctor's office visits and medicine runs before long.

And in happy news, Sophie has started potty training, so we may just be out of diapers altogether by Christmas. Now, wouldn't THAT make for a merry holiday for Mom and Dad!

Preschool was cancelled tomorrow, because just about every one of the kids is sick. Thursday, Mike has an appointment with the ENT to evaluate his huge tonsils and loud snoring that keeps his wife up at night, :0) followed by dental appointments for Mike, Annie, and myself. Hopefully we'll all be feeling a little better by then.

Thanks for stopping by. Hope you are all feeling a little more healthy than the Joneses and enjoying the Christmas season.

Shauna

Sunday, December 11, 2005 11:33 PM CST

Spencer and Sophie are sick. I took Spencer to the family doctor on Thursday after he got sent home from the hospital, and he has an eye infection. So, I've been forcing eye drops in his eyes every four hours since then, much to his chagrin. They seem to be getting better, but I may still call for an antibiotic tomorrow. His cough is sounding pretty nasty. Sophie is also coughing and congested. I stayed home with them from church today, and Mike and Annie went alone. Annie did very well going to Primary today, much to her dad's relief, I'm sure.

Yesterday, I took Annie to a Candlelighter's party on the east side of Salt Lake. Sophie and Spence weren't up to it, but we'd already mentioned Santa's name in Annie's presence and knew that there was no backing out of the deal, so Annie and I had a girls' day out and went to the party and then to the craft store to look around. At the party, Annie got to sit on Santa's lap, and we met another little boy who is almost exactly the same age as Annie who is a rhabdo survivor. It was nice to meet Jerrid and his parents. His mom is a service coordinator for Candlelighters here, and it sounds like they are very organized and functional, which is great to see.

Besides the usual wearing down that comes from having crabby, sick kids in the house, we are all doing well. We had our second advent tonight and sang more songs and told another Christmas story. We also read the story of the nativity from Luke 2. Christmas is swiftly approaching, and Annie is changing her mind just about as quickly on what she wants for Christmas. She told Santa out of the blue that she wants a doll, and then she told me today, as she was flipping through a catalog that she wanted a Tinkerbell jewelry box. I told her that Santa probably has already chosen her Christmas gifts from the list she gave him last month, but I don't know if she's convinced. I'm sure she'll be happy with whatever he brings her.

Well, I'm off to bed. I think I'm coming down the with kids' cold. Hopefully not.

Shauna

Wednesday, December 7, 2005 6:14 PM CST

UPDATE (December 8, 2005 11:40am) Surgery was cancelled this morning. Spencer's congestion from his cold is too bad to have the anesthesia, so he got sent home. It will have to be rescheduled for some time next month. I don't think Mike's feelings were hurt too badly to not spend the whole morning in the hospital pediatric surgery waiting room, but it did make for a very early start to the day for Spencer, Mike, and me (4:30am-ish). Hopefully we'll get some good naps in this afternoon.

We've had something of a crazy day here. This morning, while talking to the insurance company, we were informed that they would not be covering any of Spencer's port removal surgery because although we had a referral in place for the oncologist, we didn't have one for the specific surgeon who removed the port, so they wouldn't cover it. Mike and I spent the better part of the day on the phone trying to resolve the issue, calling our PCP, the oncologist's office, the pediatric surgery people, the insurance company, over and over again trying to get facts straight and things worked out. It finally ended with Aetna, bless them for it, agreeing to cover the surgery even without the referral because of extenuating circumstances. It was a stressful day, to say the least, and brought back some terrible memories of 2004 and the endless hours, days, and weeks that I spent on the phone fighting for the benefits and coverage that we were paying for. Something REALLY needs to be done about the way health care works in this country. It's broken, and nobody's fixing it. It's very frustrating, and the people who have the biggest issue dealing with insurance fiascos also have the most on their plates already and don't have the time or left-over energy to battle the giant insurance companies and hospitals. I also talked the oncology office in Austin today, and Spencer's topotecan bills from March of 2004 are still not resolved, either. Blue Cross/Blue Shield is being very stubborn about covering it, but thankfully, Specially for Children is being very patient about the whole thing and not pressuring us for immediate payment of the bills. It's about $15,000 worth of chemo, and our insurance SHOULD pay for the whole thing, but they are putting up a fuss about it being a "trial" drug, and not proven to cure rhabdomyosarcoma. Whatever. I have a happy, healthy 4 year old running around that is proof to the contrary. We're still praying for resolution there...

Spencer has his dental work tomorrow morning at Primary Children's. Surgery check-in is 6:00am, which is good on the fasting front, and it looks like Mike will be taking him alone, while I stay home with the girls. I'm praying that everything goes smoothly and that he does well with everything.

We have lots of fresh snow today. Annie went sledding again with her friends in our back yard. It is really cold. (It was 5 degrees this morning when I was heading outside for my run, so I opted for the treadmill instead). It's a whopping 9 degrees outside right now. BRRRR! Spencer and Sophie seem to both be coming down with colds, so they have spent the day inside, mostly curled up in blankets watching TV or sleeping. Hopefully, we'll survive this cold spell without getting too sick. Our bodies aren't used to this cold of weather, and I'm afraid it's going to catch up with all of us.

Well, I need to go get dinner on the table. Thanks for stopping by.

Shauna

Monday, December 5, 2005 1:51 PM CST

We had a fun Saturday. The kids had a great time at the Primary activity at the church, and then we invited Grandma and Grandpa Jones to come with us to the Festival of Trees. It was amazing--there were so many beautifully decorated trees. They also had stages at either end of the center that had dancers performing almost non-stop. Spencer and Sophie were enthralled by the dancing. They especially liked to clap wildly between the dance numbers. It got a little loud for Spencer towards the end, and he decided it was time to call it a day, but we all enjoyed ourselves and felt good about the cause.

On the way over to the Festival, it was snowing pretty hard, and I commented on the "blizzard." Spencer was quiet for some time and then said, "I can't see, Mom!" I thought he was talking about seeing through the snow, and didn't really think anything of it. After a few more minutes, he piped up again, "MOM! I can't see any LIZARDS!" We laughed, and realized that "blizzard" is a word that had heretofore NOT been introduced into our children's vocabularies, and Spencer, our little Texas native, was looking for geckos instead of snowflakes.

Yesterday, church was something of a fiasco. Mike was sick with a stomach bug, so I took the kids to church alone, being the brave (crazy?) soul that I am. We made it through the first hour okay, but then Spencer and Annie both fell apart when it came time to go to their Primary classes. I thought they had settled down, and I went off to my Sunday School class only to be interrupted about 20 minutes later by a very distinct and very loud WAILING sound heard throughout the building (wailing which I immediately identified as my own Annie's voice). I headed out of class to find out what torture she was enduring to make such an awful sound, when I came upon Spencer out in the hall with a teacher, who informed me that he wouldn't stay in Primary, so she was sitting in the hall with him trying to talk him into going back. Meanwhile, Annie was still shrieking like a banshee around the corner, so I told Spencer to stay put, and I passed on to find Annie, with another teacher, very upset and crying that she needed her mom. I asked her what happened and she said nothing, but that she wanted me and I wasn't there (so the obvious remedy to that problem was to start yelling at the top of her lungs). Anyway, I spent the next hour and a half trying to talk my children into settling down and going to their classes. Annie finally went, but Spencer ended up in my class for the rest of church, because I had to go play the piano for it, and he wouldn't budge on going back to class. (grrr) Needless to say, I was NOT a happy camper by the time we got home, and Annie and Spencer spent a fair amount of time sitting in time out thinking about their choices. I don't know what to do. I know that they are struggling with adjusting to new teachers, new kids, new church, new house, new city, new state, new EVERYTHING, but I just keep hoping that they will adjust soon and go to their Primary classes without dramatics every week. I guess it will just take time. In the mean time, Annie and Spencer have a date with the time out chair every day this week so that they still remember next week that they need to go to Primary nicely and cheerfully. (sigh)

The adjustment is taking longer than I had hoped. Sophie still asks for our "other house" on just about a daily basis. Spencer misses the fishy room and Allie and Jennifer and Dr. Sharp, and keeps asking when we will see all of them again. And I think Annie is having the hardest adjustment of all. I guess it shouldn't surprise me, because she's the oldest and had spent the most time in Texas. But, she has always said how excited she was to go to Utah and how great it is and how much fun she's having here. It all came crashing down last week, though. It hit her that she isn't going to see Kenneth very often anymore, that she has to make all new friends, and that life is really, REALLY different here. For the first time a few days ago she said, "I don't like living here. I want to go back to Texas. I don't have any really good friends here, and I miss my friends and my house and everything. I don't like it here." It was really sad for me, because she has been the eternal optimist about our move up until now, saying how great it is, how much she loves the house, how fun it is to have little girls her age all around. I think the excitement is wearing off and the homesickness is setting in for her. She has a hard time being apart from us for any length of time. Twice this week she has come home from her neighbor friends' houses crying because she missed us. The separation anxiety started for her when Spencer was diagnosed with cancer, and hasn't really resolved itself. I wonder if we should get some more counselling for her. I don't know. I guess we'll just pray about it some more and hope to find what she needs to feel safe and secure again.

Well, this turned out to be a lot lengthier than I intended it to be when I started typing. We are having lots of good times, too, amid the bursts of homesickness and difficulties in adjusting to our new home. Last night we had our first advent--lit a candle, told a Christmas story, sang songs, and talked about how we can give gifts to Jesus this Christmas. We are listening to lots of Christmas music and are feeling the joy of the Christmas season. Annie is catching the spirit of giving, and is more excited about the gifts that she is giving to Spencer and Sophie than about what she might be getting from Santa. It's good to see.

Shauna

Saturday, December 3, 2005 9:36 AM CST

**More gingerbread house pictures added**

The snow had totally melted, but we got another dusting during the night, and our world is white again. This morning the kids have a Primary activity at the church, where all of the children get to meet their teachers for next year. They'll be eating pizza and playing games, and the kids are so excited to be going. Afterwards, we are planning on going to the "Festival of Trees." It's a money raising effort for Primary Children's Hospital, and there are over 700 decorated Christmas trees for sale, along with wreaths and decorations and candy. Every penny of the admission fees and sales goes to the hospital, so it's a good cause, and I'm sure the kids will love it.

Speaking of Primary Children's, next Thursday is Spencer's day there for dental work. I'm really excited for him to get his teeth taken care of, but I'm not looking forward to the anesthesia. He's never a very happy camper when he's coming to. We'll be sure to take pictures of his new smile. I've gotten used to his little chipped-tooth smile. It will be nice to have it fixed.

Well, I'm off to have some weekend fun. Hope you all have a good one, too.

Shauna

Wednesday, November 30, 2005 7:50 PM CST

**NEW PHOTOS ADDED**

Not much to report. Winter has come in full force, and I am FREEZING! It really feels like Christmas, though, when I look out the window and see the white world outside. I finished up our Christmas shopping today, so now we can sit back and enjoy the Christmas season. We made gingerbread houses for Family Home Evening on Monday, and everyone had a fun time. Annie's house turned out really cute--she's such an artist! Spencer and Sophie were more interested in eating the candy than decorating their houses, but they thoroughly enjoyed themselves, so the evening was a success. I'll have to post pictures of their masterpieces soon.

We are feeling more and more at home here, although yesterday morning both Spencer and Sophie woke up begging to go back to our Texas house. Spencer was missing the swingset, and Sophie just missed Joy. But, we are adjusting well overall and are excited for the fun of the holidays ahead.

I need to get some children to bed. Thanks for stopping by.

Shauna

Saturday, November 26, 2005 11:59 AM CST

IT'S SNOWING!!!!! We saw on the news that it was coming, so yesterday, Mike got up on the roof and hung the Christmas lights. We also put up and decorated the Christmas tree, along with the holiday decorations throughout the rest of the house. It looks very festive here! Sure enough, this morning we woke up to a white yard, much to Annie's joy and celebration. Spencer was pretty excited, too. He came running into our room this morning and said, "Mom! It's snowing! It's CHRISTMAS!" Then, he ran back out, headed into the living room, turned around, and came running back into our bedroom with a note of despair in his voice, "MOM! Santa didn't come!" We had to explain that we still have 29 days before Christmas, but that it was getting closer. We are supposed to get more snow this afternoon and tonight. The whole thing is pretty exciting for our little Texans. Annie is outside right now, sledding with her neighbor friends in our backyard. She's freezing, but she's having the time of her life. It's fun to see her so excited about the weather.

Thanksgiving was a success. All of Mike's immediate family and their families were here except for his youngest brother, Ryan, and his wife, Malissa, who were in California visiting Malissa's grandmother. Dinner was delicious, the cousins had fun playing together, and the grown-ups had a good time visiting. We were worn out by the end of the day, but we really enjoyed spending quality time with our family.

Oh, and Spencer had his appointment with the pediodontist this week. He ended up not getting any work done, but we got the full story of what NEEDS to be done. It's not pretty, either. The dentist that we went to is really nice and did his residency at Primary Children's and worked a lot with cancer kids, so he, sadly, knows what to expect from their mouths. Spencer has several cavities and will need a pulpotomy on two of his teeth, along with crowns on the front three. They are going to do all of the work at the same time under anesthesia at Primary Children's Hosital on December 8th. They'll take x-rays at the same time and see if there's more damage than we can even see. We knew that chemo and radiation mess up cells all over your body, and throw off the acidity levels in the mouth, thus promoting lots of dental issues down the road. (sigh) It doesn't make the bill much easier to swallow, though. It's going to be really expensive, but we'll be happy to get everything taken care of for him.

On a sad note, we lost another Austin-area cancer warrior yesterday. Jennifer Wilks fought leukemia for a long time and was an inspiration to everyone who knew her. We only saw her a few times in the clinic, but everything we heard about her told us that she was a remarkable young woman. I know that she will be sorely missed. Our thoughts and prayers are with her family.

Well, I need to go. Lots to get done today. Thanks for stopping by.

Shauna

Tuesday, November 22, 2005 2:01 PM CST

Happy Thanksgiving week. We have a lot to be grateful for, as usual. In church on Sunday, we heard a talk on gratitude that really struck me. The speaker talked about the book, "The Hiding Place," by Corrie Ten Boom. I love that book, and it was great to be reminded of some of the principles from it. Corrie and her sister were imprisoned in a concentration camp for trying to help the Jews during the Nazi regime. While in a particularly cramped and filthy barrack, Corrie's sister Betsy had them give prayers of thanks for everything--including the fleas that had infested their room. Corrie had a hard time understanding how fleas could be a blessing, but later discovered that the guards never came in the room, thus allowing the women of the barracks unusual freedom, because of the fleas. What a blessing! I've been thinking about that this week and how it applies to our life. And so this Thanksgiving, I am thankful for cancer and the blessings that it has brought to our family.

Without cancer, we would never have met Allie, or Jennifer, or Dr. Sharp, or the wonderful people from the Children's Hospital of Austin. Without cancer, we would never have known the Fahertys, or the Randels, or the Youngs, or the Burnhams, or the many other Austin area cancer families with whom we have become so closely tied. Without cancer, we would never have known the Pirros, or the Davideits, or the Roehlings, or the other wonderful people that we have met and learned to love through Caringbridge. Without cancer, we never would have started homeschooling Annie, which has been such a good thing for our family. It's so nice to have her here all day and to be part of her education in such a big way.

Because of cancer, we have seen in a very tangible way the goodness in people. Our children know that the world is full of good hearted people who want to help and do so without being asked. I didn't do laundry for the entire year of Spencer's cancer treatment--a friend came to our house and picked it up every few days, always bringing it back clean and folded the next day. We had a meal brought one day every week during Spencer's treatment from a group of friends who will now be forever in my heart. Our friendship with Joy and her family grew in ways it couldn't have otherwise. Sophie learned to love her like a second mom, and I knew that I could depend on her for anything. We received packages and letters and emails from friends and family on a regular basis. People we had never met before showered us with love and kindness. Because of cancer, Mike's mom and my mom came to our home on a regular basis to help out with chemo treatments, and the kids had a chance to build solid relationships with their grandparents, even though we lived half-way across the country.

Cancer made us more thoughtful, more reflective, more compassionate, more grateful for life. Cancer allowed us to feel the closeness with others that comes from being united in prayer and to feel the power and love of being prayed for and thought of often. Because of Spencer's suppressed immune system, we spent more time together alone as a family, without the distractions of all of the events and busy-ness of life. Cancer brought us closer as a family, and brought Mike and I closer together as a couple. Through cancer, we came to understand better what faith is and what prayers means. Without cancer, we would not be who we are today, and I think that we are a better family for it. And so, this Thanksgiving I am thankful for our cancer journey (and especially thankful that it is behind us). I'm thankful that Spencer is doing well right now, and I'm thankful to know that no matter what happens to us, we will have things to be thankful for.

Thanks to all of you for stopping by. Here's hoping for a Thankful Thanksgiving for all of you.

Shauna

Thursday, November 17, 2005 8:21 PM CST

Not too much excitement going on the past few days, which is always a good sign. Wednesday, I taught Spencer and Sophie's preschool class here, and we had a really good time learning all about the letter "L." We showed all of the kids Spencer's port for show-and-tell, and they were all impressed. Then Spencer showed him the bandage on his chest to show them where the port had been. All of it was very cool and interesting to the 2, 3, and 4-year-old crowd. Spencer is still a little sore, but it isn't slowing him down any. He keeps touching his incision area and saying, "Yep, it's still sore," and then running around all over like any wild 4-year-old boy. He's coming to terms with his port being on the outside of his body, which is a good thing.

We are struggling once again with getting Spencer to use the potty. When Allie showed up, he decided that he didn't need to be potty trained, and that he didn't need to be four years old, either. Mike asked him why he was having accidents, to which Spencer replied, very matter-of-factly, "Allie came and now I'm three again and I don't have to use the potty." Mmmmhmm. So, we're trying to recondition him to think it's cool to be four and to be a big boy and use the potty. I think the two days of sedation for scans and surgery close together had something to do with it, too, because for a day or so after sedation, he is just not quite himself. Anyway, we're working hard to regain lost ground and get him consistently using the potty again. Wish us luck.

Today was errand day, and so Annie and I ran all over town, getting a lot done while Mike worked and the little kids napped. Mike and I still need to get Utah driver's licenses and get the car registered in Utah. We only have until the end of this month before the registration expires. There's just so much always going on... We'll get to it.

My parents are coming to visit tomorrow from Idaho. They are bringing my niece Abby (7 years old) to play with Annie for the weekend. It will be nice for them to get to see where we live and to visit with them for a few days. Mike and I are sneaking out Saturday night to see the new Harry Potter movie. We're excited to have a date!

Well, I need to get children to bed. Thanks for checking on us.

Shauna

Monday, November 14, 2005 9:08 PM CST

Port-a-cath Pictures Added

There was yet another mix up with Spencer's surgery, and late Friday afternoon the hospital called to confirm with Mike that Spencer was getting his BROVIAC line out in the RTU Monday afternoon. GRRR! Mike told them that it was NOT a broviac, it was a port-a-cath, and they said that they couldn't do port removal in the RTU, it had to be in the O.R., so they had to juggle everything around again. I was pretty annoyed by the whole thing, because I specifically asked about what the RTU was when they first set it up and asked if they did surgery there, and they said no, but they did "procedures" and that's where Spencer would be. BUT, it was a blessing in disguise, because we ended up having a 6:00am check-in time this morning, so the fasting all day wasn't an issue. Surgery was at 7:30, and we were out of there by 9:30. Mike stayed home with the girls and his mom came along to keep me company.

So, the port is out, and we have it in our possession after some persuasion on my part with the surgeon. I asked him first thing if we could take it home, and he said that he doesn't do that because of germs, etc. I told him that we wanted it anyway, and we would not let the kids disassemble it or anything like that. He gave in, but only after letting me know that I was doing it at my own risk and I'd been warned. (?) So, now we are the proud owners of a port-a-cath on the OUTSIDE of Spencer's body. YEA!

He had his ups and downs, but did really well over all. He was extremely annoyed at the bracelet on his ankle, the IV in his foot, and the oxygen monitor on his toe, and he was also pretty put out to have to drink a cup of gatorade after surgery before they would take any of that stuff off of him, and he let everyone know about his displeasure. But, he woke up quickly and didn't get nauseated after the anesthesia, so overall he did really well. He has kind of lounged around watching movies today, but he seems to be feeling well and hasn't had any pain issues. We haven't really made a big deal of his port being out yet, because we don't want him grabbing the incision site until it heals a little more, but Mike and I are very happy to have it all behind us and to be able to move forward with fewer clinic visits and a little more freedom.

Allie went home yesterday amid about as much sadness as there was joy at her arrival. Spencer sobbed all the way home from the airport, and all day today Annie keeps saying, following very pronounced sighs, "I just miss Allie." We had a really good time, though, and are so happy that we had a chance to spend a weekend with our favorite 18-year-old.

The kids are supposed to be sleeping but are not, judging from the sounds coming from their bedroom. I'd better go. Thanks for checking on us. We appreciate your visits.

Shauna

Saturday, November 12, 2005 2:19 PM CST

New Photos Added

ALLIE'S HERE! We've been thoroughly wearing ourselves out partying since Allie arrived Thursday night. We picked her up from the airport amid much rejoicing, and then we came home and rejoiced some more until WAY past the kids' bedtime. Yesterday, Allie, the kids, and I headed down to BYU to make another trip to the Bean Museum (Natural Life Museum). We caught a really fun reptile presentation while we were there, and the kids got to pet a live turtle named Thunder, see a blue-tongued skink named PJ, and pet a rock python named Cuddles. Everyone had a good time, and even Allie and I learned things that we never knew before. I drove Allie around a little and showed her the highlights of Provo, UT. Then we headed to my favorite Mexican restaurant EVER, which just happens to also be in Provo for some delicious chicken burritos with green sauce. Allie had to confess, it's some of the best Mexican eatin' she's ever had as well, and that's saying a lot coming from someone who lives right across the border from MEXICO! And then, on the drive back home, we were lucky enough to spot a longhorn! A Texas longhorn grazing off of Bangerter Highway in the middle of the state of Utah. Who woulda thought it! The afternoon was filled with puzzles and movies and playing, followed by another night of staying up WAY too late.

This morning, it was a drizzly day, but we braved the elements and headed up into the mountains, up Big Cottonwood Canyon. It was raining down in the valley, so of course it was snowing up in the mountains, and by the time we got to a good place to stop and pull over and get out, there was snow on the ground, and it was a brisk 29 degrees out, accompanied by a whipping wind that made it feel like 29 below to those of us who have gotten quite accustomed to the balmy Texas winters of Austin. I'll put some pictures of the occasion in the photo album. It was fun, but short-lived. Sophie lasted about 30 seconds before she wanted back in the car. The rest of us made it maybe 5 or 10 minutes, tops. It was beautiful up there, and it was a fun little taste of Utah winter weather.


Video Clip: "Wish you were here!"

Afterwards, we headed back here for lunch and naps, which brings us to the present. The rain has stopped, and we are now gearing up to head back out. We're thinking of riding the light rail system into downtown for a tour, but it will depend on how brave we're feeling about the elements. Allie and I are having a hard time getting warm again after our forray into the snowy realms of the Solitude Ski Area. :0)

We're having a good time, and we're already feeling sad that Allie has to leave again in the morning, but we're really grateful to her parents for letting her come, and we are completely enjoying having her with us for a while. Thanks for checking on us.

Shauna

Wednesday, November 9, 2005 3:54 PM CST

UPDATE: (Thursday, November 10, 2005, 3:49 PM) Port removal surgery has been postponed until Monday afternoon at 2:30. Apparently, the ball was dropped at the oncology clinic, and they forgot to ask for us to be put on the schedule. So, we'll have the port removed on Monday in the RTU (Rapid Treatment Unit). (grrrr) I'm a little upset by the delay, and especially by the late surgery time, on a count of Spencer has to be FASTING all day. I asked if we could reschedule for a later day/earlier time, but the receptionist (same one who forgot to schedule us for surgery today) was pretty sure that this was the best they could do. Trying to be helpful, she said we could give him jello in the morning--such a filling breakfast. Wish us luck with that. Oh, well. We'll survive it, and it will be good to be port-free. It's kind of the last thing that is still tying us to the cancer lifestyle--if he runs a fever we have to go into the hospital, he has to have it flushed monthly. Once it's out, we'll be free of all cancer related paraphenalia (except the scars, of course). I'm hoping they let Spencer bring the port home. I think he would like to keep it, even if it's not inside of him like he would prefer. Anyway, so now we'll have a recovery-free fun fest with Allie this weekend. We are planning a trip to a dinosaur museum and other fun places. We'll keep you all up-to-date on the fun that ensues!


CLEAR SCANS!!!

Happy Anniversary to Spencer! One year of remission and counting. Today's visit went a lot smoother than last time we were at Primary Children's. Our nurse, Heather, was much better at accessing him and allowed him to sit up while she did it. YEA! Then we headed to radiology for sedation. They gave Spencer a medicine called versed that didn't put him all the way under, but made him VERY happy. As soon as they gave him the iv push, he started giggling...and giggling...and giggling. He was very happy through the entire scans, which was a nice change. He held really still and just kept smiling at us the whole time. He even tried to talk some. His mouth was moving in slow motion, like he was talking VERY slowly, but no words were coming out. It was pretty funny. After the scans were done, I scooped him up off of the table into my arms, and he giggled and said, in a somewhat slurred voice, "I didn't cry, Mom. I was funny." He came out of it really well, too, with only hiccups for a side effect.

After scans, we headed back to the HEM/ONC office, because they couldn't get blood from his port. They could flush it with stuff, but couldn't get blood to draw. So, we again had to use the anticoagulant in his line. Luckily, it only took 30 minutes and they were able to get a draw. At that point they said that the doctor was downstairs looking at the scan results and would be up shortly. So we waited and waited. And waited. And waited some more. Then a nurse practitioner came in and started asking us questions about his original scans and where the tumor was located and how it presented. Then, she left and we waited and waited some more. Mike and I were both getting VERY nervous by the wait, but as it turns out, they were just running a little behind, and were also just missing the scan results from his first scans.

The doctor was very nice and good with Spencer. He said that for the next year, we will have scans and check ups together every three months, so besides his surgery tomorrow (which is still on--his lungs are clear even though he's still coughing) we don't have to go back until February. HURRAY! Mike and I are so relieved and thankful.

And in other good news--Allie comes tomorrow! WAHOO! We are so excited to see her again. We're going to have a big party tomorrow night, that's for sure.

Thanks for checking in. Thanks for your prayers. We are feeling very thankful again this Thankgiving season.

Shauna

Monday, November 7, 2005 10:04 PM CST

Update: (November 8, 2005, 6:40pm) Well, tomorrow is scan day. I'm feeling the pre-scan butterflies in my stomach tonight. We have to be at the hospital to get accessed at 8:30 tomorrow morning, and then the contrast fluid drinking games will commence at 9:00. Scans should start somewhere around 10:00. At our last clinic visit, we were told that they usually have scan results back pretty quickly, so I guess we'll see what "pretty quickly" means in Utah vernacular. It's been 6 months since his last scans. Here's hoping all goes smoothly...

I posted some more pictures from Spencer's birthday. I have quite a few, so I'll probably trade them out again soon for even more.

Sophie had a terrible night last night. She has a barking cough and is so congested that she couldn't really rest. That meant that I couldn't really rest either, since she slept with me because Mike and I both knew that it would be easier for one of us to sleep with her than to get up and down a hundred times in the night. Spencer's cough is maybe a little better today. The hospital called to confirm scans on Wednesday. I'm hoping he's all well by then. Annie still hasn't caught anything and we're REALLY hoping it stays that way.

Oh, and Spencer decided he was ready to learn to read today. I have a book called "Teach Your Child to Read in 100 Easy Lessons" that I used to teach Annie to read. Spencer, the little smarty pants, sat down with me and the book and breezed through the first 11 lessons, much to my surprise. He's in reading to Mike right now. Annie's reading is also improving quickly, and she's enjoying books more and more. Sophie doesn't want to be outdone, so she sat on the other side of Spencer and immitated everything that he said. It was pretty cute.

Spencer is peeing on the potty like a pro. We're still working on getting him to poop on the potty like a pro. Any suggestions from those of your who have been victorious in the potty training world would be greatly appreciated.

Well, I'm wiped out. No sleep, and another big day of trying to get our house in order have taken their toll. Mike and I hung a bunch of pictures today, along with our lone star that we brought with us from Texas. I'll take some pictures soon--it's really starting to feel more and more like home.

Thanks for stopping by. We appreciate your visits.

Shauna

Sunday, November 6, 2005 1:22 PM CST

*New Photos Added*

Spencer's birthday was a hit. He got to talk to Allie, and he called and left a message for Jennifer. Joy called, along with most of his aunts and uncles and one of his little friends from Texas. He had a fun day. He and I went on a date to BYU campus, where we took in the Bean Museum. It's a natural life museum and has TONS of taxidermied animals on display. He was in heaven. While we were there we watched a movie on snakes, and we headed over to the Widstoe Building to look at all of the aquariums on the bottom floor. Then we stopped at the Wilkinson Center (Student Life Building) and got some brown icecream before heading back home. Spencer was coming down with a cold (which is now full blown, complete with a stuffy nose and nasty cough) and he was really worn out by the time we left. He slept most of the way home. He loved the "Y" on the mountain, though, and kept stopping to locate it wherever we were at any given moment. Tomorrow or the next day I'll put up more pictures from the day, along with a picture of Y Mountain. The fall colors were beautiful, and it was really fun to be there on a date with Spence. We had Grandma and Grandpa Jones over for cake and icecream in the evening. We had a Spiderman cake at Spencer's request, and of course more chocolate icecream. All in all, it was a really fun day for him, I think.

As I mentioned above, Spencer is now sick, along with everyone else in the family besides Annie, who has somehow managed to avoid the ickies so far. We are really hoping that we are all better by the time Allie gets here Thursday night, and especially that Spencer is better before Wednesday, because I doubt they will do anesthesia while he's so congested. That would postpone scans AND surgery, which we really don't want to do, so we are hoping that his cold passes soon.

We also discovered today that Spencer is quite the puzzle genius. Annie had a 100 piece puzzle that she and I were trying to get started. Spencer climbed up in a chair next to me, and before I knew it, he had a good chunk of the center of the puzzle completed. He loved it. After we finished that puzzle, Annie went off to play with Henry, the parakeet, but Spencer wanted more. So, I got out a Finding Nemo puzzle, and he and I put it together 3 times in a row, and he was still not bored. I think I know what he'll be getting for Christmas this year...

And speaking of Henry, Mike and Annie are training him to step up onto their fingers. Yesterday was the breakthrough day, and today he's stepping up onto both of their fingers without too much ado. Annie is very excited that she is a pet owner, and that she has such an intelligent and obedient bird.

Well, I'd better get going. Thanks for stopping by.

Shauna

Thursday, November 3, 2005 9:19 AM CST

Happy 4th Birthday, Spencer!

Wednesday, November 2, 2005 9:02 AM CST

Life is good. We are settling in and starting to feel more and more like home. The kids had a good Halloween. I ended up doing a frantic shopping trip on Halloween morning for costumes. Annie said she wanted to be grapes, and Spencer said he wanted to be a bear, so I headed to Walmart and got Annie purple sweats, purple balloons, and a green tassle for the top of her head...and then as we were heading up to the check out, she decided what she REALLY wanted to be was a witch. So we ended up finding her a witch costume, and the closest thing I could find to a bear costume was a lion costume for Spencer. So, Sophie ended up being an elephant (borrowing a costume that Mike's sister made several years ago), Annie was a witch, and Spencer a lion. It was a fun evening. I even made homemade donuts to carry on a tradition that my mom started when I was little. After trick-or-treating in the neighborhood, we headed over in the car to trick-or-treat to cousins and then to Mike's parents' house. Sophie was asleep by the time we got to Grandma and Grandpa's. She had missed her nap and was completely exhausted.

Yesterday, we headed to the dentist to get cavities filled for Annie. Unfortunately, they could only get her numb before she freaked out and wouldn't let them do anything else to her. SO, now we need to set up an appointment with a pediatric specialist so that we can get sedative for her and try again. (growl) I'm getting really weary of the dentist's office, and I haven't even been there for me yet.

Today is preschool. While Spencer and Sophie are there, Annie and I will run to pick up the final birthday party supplies. Poor Spencer. He is completely fed up with all the changes in his life and is flat out refusing to allow anymore. Every time I mention his birthday, he gets very cranky. "It's NOT my birthday! I'm NOT gonna be 4! I'm THREE" Not the usual little kid response, but I understand that he's feeling like he's had just about every surprise and change that he can handle. He's also very irate about getting his port out next week. He doesn't remember life without a port, and he's pretty convinced that it's an essential part of his body. He was crying (again) last night, that he needs his port and he doesn't want anyone to take it out. I think he feels like it's his link to Jennifer, too, and he doesn't want to give it up. It's hard for me to see him struggle. It's going to be a hard transition to non-port life for him. Putting a needle in his arm is going to be a challenge for him, I already know. Luckily, we shouldn't have to do it that often anymore, and it won't be a regular trauma for him. He's such a sweet boy who just wants his world to be predicatable, and it's been anything but predictable lately.

Well, I'm off to do school with Annie. Thanks for stopping by.

Shauna

Friday, October 28, 2005 9:54 AM CDT

TGIF! We are excited to see the weekend here. It has been an insane week. Annie had FOUR cavities at the dentist on Tuesday! They are tiny ones, but STILL. So, she'll get them filled next week at two separate visits.

On Wednesday, Mike and I spent a full day yanking up the old carpet and pad, pulling out the pad staples, vacuuming and cleaning the floors, and then painting/sealing them with Kilz to get rid of the urine smell. Let's just say, those cats had bladder control issues. EVERY room had about 50 stains, and in several places we had to pull up the tack board because it was rotting with urine. SO GROSS! We wore masks and gloves, but after 10 hours or so of looking and smelling it, we both had dreams about cat pee pee, and they were NOT pleasant ones, either. BUT, we got rid of the smell, and yesterday our new carpet arrived, and it is SO nice to have our house really liveable again.

Last night was church women's volleyball. I joined our ward's team a few weeks ago when we moved in, and now we are in tournaments. Last night, we played three different teams, two games each, and we came in first place! Yea! So, we move on to the next bracket and play two more teams tonight to see if we move further into regionals. I was WORN OUT last night after playing 6 games of volleyball, on top of the furniture rearranging/carpet pulling and hauling that I've been doing for the past two days straight, but it was a lot of fun, and I'm excited to play again tonight. Also tonight is the church Pumpkin Party at 6:30. We'll get to spend only about 45 minutes there before volleyball begins, but it should be fun. There will be pumpkin decorating contests and bobbing for donuts on a string. The kids will love it, I'm sure.

Tomorrow morning we are helping to clean the church, and then hoping to get a hike in up in the mountains. It's a rainy, chilly day today, so tomorrow's hike will hinge on whether or not the rain clears up. The mountains are still very pretty, even though a lot of the leaves are falling off the trees--it sure makes the ground beautiful. This is one of my very favorite times of year. I love the sweater weather and the fall colors, along with the excitement of all the holidays coming up. We still haven't nailed down the final Halloween costume decisions for the kids, but, hey, we have the weekend to work out all of the details, right?

Spencer is still doing well with potty training. He hates to quit what he's doing and actually go, but with a little coaxing, he gets the job done. I'm so relieved by the whole thing, for more reasons than just the joy of not having to change his diapers. With surgery and radiation on his bladder, we were warned about possible problems with bladder control and function. There's a chance that his bladder won't grow to normal size, or be as elastic as it should be. But, he seems to have really normal function and control right now, which is wonderful to see.

And, the biggest news of all is coming up--Spencer turns 4 next week on November 3rd. His birthday also marks one year off-treatment. Two milestones that we were not sure we would ever see, but are so blessed to really get to. I feel like we've turned a corner. I was reading our journal entries from 9 months ago or so, and almost every day I wondered if we would ever really be able to move on--to spend a full day where the fear of cancer didn't grip us like a vice. I think we're there. I still think about it, but it doesn't consume our thoughts or lives any more. I introduce Spencer to everyone as "our cancer survivor." And I say it with full expectation that he will remain a survivor. I know all too well that that freedom could change in an instant. One bad scan and we'd be back in the middle of the nightmare all over again, but for now, it feels like the whole thing was just that--a nightmare that we've woken up from and realized that it isn't our lives anymore. Spencer is here with us. He's growing and developing and we get to hold him and read to him and give him haircuts and take him to the park or the grocery store or church without fear of germs. He is a normal little almost-four year old. I'm so thankful that Spencer is doing so well.

Thanks for your prayers. For your support and love and service to our family. Thanks for still checking up on us. We appreciate your visits.

Shauna

Tuesday, October 25, 2005 8:30 AM CDT

I have four words for you all to sum up the elation that we are feeling around the Jones household--SPENCER IS POTTY TRAINED! YEA! We are so SOOOOOOO excited at our house. He just decided about 4 days ago that he wanted to use the potty, and he hasn't had an accident since. I'm amazed. Annie did the same thing when she decided to potty train--one day she just decided she was ready, and that was it. We'll see if it really sticks, but I have high hopes. And, he did it just in time to still be three years old when it happened! Yea!

In other very exciting and fun news--Annie is the proud owner of a pet. She got a blue parakeet, which she at first named Shilite (pronounced Shy-lit) until she discovered that the parakeet is a boy and Shilite is a girly name. So now the parakeet is named Henry. We get up to the minute reports on whether Henry is eating or not eating, the condition of the bottom of his cage, and whether he's listening to her "Barbie: Princess and the Pauper" cd or not. She is so excited. She took out a loan from Mom and Dad to buy the bird, and is now working very hard to pay it off so that he can be hers free and clear. One of these days, we'll photograph Henry so everyone can see what a handsome little guy he is.

In other news, a man came out to our house and measured for the carpet yesterday, and tomorrow we're pulling up the old carpet and scrubbing the floor underneath/painting over any damaged areas so that the smell doesn't creep back up through the new carpet. I'm also teaching Spencer and Sophie's preschool tomorrow. We're learning about the letter I--very exciting stuff. Annie has a dental check up today, and she's very excited to tell the dentist that one of her top front teeth is loose. The new carpet should be installed Thursday or Friday. Oh, and I'm still in the middle of painting like a mad woman.

Last night, Spencer called Allie to tell her about the joys of potty training, and then Annie had a long conversation with her about Henry, which concluded with Annie singing some of the songs from her Barbie cd to Allie. Mike intervened, or I think Allie would have probably heard the whole cd. I didn't get to talk to her myself, because Annie hung up the phone before I got a turn, but the kids were really happy to talk to her. Allie is something of a celebrity around this house. We'll call again soon.

The kids are begging for breakfast, so I'd better go help them out. Thanks for stopping by.

Shauna

Friday, October 21, 2005 6:21 PM CDT

NEW PHOTOS ADDED!

Okay, I'm going to try to type through the lingering shakes from my email withdrawal that Mike mentioned in his last post, so bear with me and I'll do my best. The house is feeling like home more and more every day. We had someone come out and look at the carpet today to replace the pad, and he said it was pretty much a hopeless cause and would need to be completely replaced. Our realtor talked to the sellers and they agreed to pay the bulk of the carpet replacement, which is great. So, we went and picked out new carpet today, and it will be installed next Thursday or Friday. So, on about Wednesday, we'll pull up the old carpet and assess the damage to the floor underneath and scrub and clean, and maybe paint over it so that the smell doesn't sneak into the new carpet. The real estate appraiser that appraised the house told our neighbor that this was the worst house he's ever been in for pet odor and stains. But, we're all overjoyed that it's getting taken care of soon and we will soon be able to walk barefoot on the carpet without feeling icky.

Spencer saw a man today dressed in dark slacks, a belt, and a long sleeved button-down blue shirt and graying hair. He pointed and said, very excitedly, "LOOK, MOM! It's Dr. Sharp!" He actually did look a lot like Dr. Sharp, except for the fact that Dr. Sharp is caucasian and this man was hispanic, but from the back, he did bear a striking resemblance to our favorite oncologist ever. It was funny how excited Spencer got over a Dr. Sharp sighting. Pretty cute.

Annie has decided that now she wants a parakeet. A blue parakeet, to be exact. Mike isn't sure that HE wants a parakeet, and so the discussion continues in the search for the perfect pet for the Joneses. Both Mike and I are hesitant to allow any indoor pets after the carpet fiasco that has occurred, but we're trying to keep open minds. We do realize, deep down, that just because you HAVE indoor pets doesn't necessarily mean that your house is covered in urine stains and pet smells, but it's hard to convince ourselves of that at the moment, as we dodge yellow stains all over the house. Mike has promised to have a good long chat with Annie tonight about what kind of a pet we should settle on, because she is dying to get one and is quite put out at our indecision.

Scans are rapidly approaching, and I'm trying not to think about them too much. It has been almost 6 months since our last ones--it seems like it's been forever. Spencer is eating and playing and growing well, so we just hope and pray for the best.

Well, I've decided to try and get the house painted before we get new carpet, so that I don't have to worry about spills as seriously. We'll see how far I get. Mike picked up a gallon of paint at Lowe's tonight, and I'm hoping to get under way this weekend.

Thanks for checking up on us. Thanks for your love and support. We really appreciate all of you.

Shauna

Tuesday, October 18, 2005 10:58 AM MDT

Hello all. It's Mike. Shauna made me promise that I'd post an update, since we are cut off from the world. That's right: CUT OFF. Our internet service was supposed to have been setup last week, but the service provider, who shall remain nameless (Psst! It's QWEST!!!), is "temporarily out of capacity" and didn't bother to tell us that until I called them yesterday to see what was up. Oh, Qwest. Why would you do that to us?

Anyways, since I telecommute, I am back at my parents house today, mooching off of their internet connection and catching up on email, etc. Comcast (cable company) is going to come on Thursday to setup our internet service, by which time Shauna will have been without email for almost a full week and will most likely have the shakes pretty bad.

So... about the move-in. It went pretty well. We rented a U-Haul and made it in two loads, with help from my family and some neighbors (thanks guys). The carpets were not cleaned until mid-Saturday, so that was a bit of an obstacle because we didn't want to unload our stuff onto wet carpet. So we put the first load into the garage and by the time we got to unloading the second load, the carpet was pretty dry.

The carpets cleaners were hired by the sellers as part of the contract of sale because they had three cats and a dog that they kept indoors. We noticed the animals indoors when we first went through the house, but didn't mind too much because there weren't any stains or smells. But when we came back for the home inspection, the sellers, who were in California for several days on a house hunting trip, had left the animals inside while they were gone. Being left alone in the house with strangers wandering in and out must've upset the cats, and they apparently alleviated their stress by peeing all over the carpet.

Also unfortunately for us, in spite of the carpet cleaners' efforts, the carpet is still... "compromised" in several rooms, most notably in the kids' room and in the living room. Grrrr... very frustrating, not to mention disgusting. I called our realtor and she is going to see what we can do to resolve the situation. I fear that we may end up replacing the carpet, but I'm still hoping that we can find some other way to get it clean. If you have suggestions, by all means feel free to email them to us.

Once we get the carpet issue resolved, we'll be happy as clams -- happy little clams with lots of unpacking to do. There's still lots of "settling in" work to be done, but we're getting there. The kids have already warmed up to the house quite a bit. So many little neighbor friends to play with, but so few hours in the day. Spencer said to me yesterday over breakfast, "I LOVE this house, Dad!" Annie and Sophie are enjoying it too.

Since the kids tend to take their cues from us, we (Shauna and I) are trying hard not to let our frustration about the carpet show through to the kids. We found in Texas that when we complained to each other about the fire ants or the weather that Annie was very quick to pick up the same tune. Hopefully we can all keep a positive attitude in spite of an imperfect situation.

Along those same lines, the other day I was speaking to a friend of my parents' who recently moved back here from Hawaii after living there for several years. I asked her how she was adjusting to being back. She said, "I'm happy because I choose to be happy. I wasn't ready to come back yet, but circumstances have forced me here. I choose to be happy anyway." Very wise words.

Thanks for stopping by.

Friday, October 14, 2005 10:32 PM CDT

We are home owners! (again!) When we walked into closing on Wednesday, the woman at the title company smiled at us and said sweetly, "First time home buyers?" I said, "Actually, we're third time home buyers." She looked at our realtor and said, "These are good clients to keep in touch with!" But, we're really hoping that our days of house hopping are over and that we can really settle in and make this place home. We recorded on the house today and are moving in tomorrow morning. We went over this evening to clean. They have had several pets--a dog and I'm not sure how many cats. And you can smell it, too. I'm really hoping that they are taking their pets. The dog was still in the pantry, and the cats were wandering around outside. Let's hope that we don't inherit anything other than the house tomorrow!

So, tomorrow morning, they are having the carpets cleaned, and then we will move our stuff in! Annie has made three new friends already and is so excited about her new playmates. There are twin 6-year-old girls next door named Jessica and Jayden, and there's a five year old girl across the street named Becca. Our next door neighbors on the other side have a 4 year old boy and an 18 month old daughter. Oh, and the twins have a 2 year old little sister, so I think our kids are set for play friends without even having to go more than a house up or down the street. Annie and her friends were cute tonight. It's funny how kids can know each other for all of 2 minutes before they're chatting like they've been best friends for years. It's a good thing Annie's not shy. She just walked right over and introduced herself and the entire family, and then the playing commenced.

When we got to our new house tonight, Sophie wandered around for a little while before saying she wanted to leave. I said, "Do you like your new house?" She looked at me funny and said, "This isn't my house." Once we get furniture in, we're hoping she changes her mind.

Yesterday, Annie and Grandma Jones and I spent all day canning the apples from their backyard apple tree. It was tiring, but lots of fun, and we have dozens of jars of applesauce/apple pie filling/apples to show for all of our hard work. Annie loved the fact that we were storing up for the winter. She thinks the whole idea of living in the snow is thrilling. She kept saying, "So when it SNOWS, we'll have apples to eat!"

Well, I'm off to bed. Big day of moving tomorrow. Wish us luck.

Shauna

Wednesday, October 12, 2005 1:47 PM CDT

Okay, Nurse Jennifer, if you are reading this, we need you to move to Utah IMMEDIATELY! As in RIGHT THIS VERY MINUTE! And bring your COAT--it's COLD! We went to Primary Children's Medical Center Hematology/Oncology clinic today, and it was mostly a bust. On the bright side, we really liked the fellow (doctor in training) that we met with, and she was the one who did the exam. She was really good with Spencer and he did really well with her. Then, the not so bright side showed up. The nurse wasn't very good at accessing Spencer's port. She commented on how "small" it was. (!?) She also had to have him lie down to access him, which totally freaked the poor kid out. I wanted to have him be able to sit up to be accessed, but she (and subsequently, I) didn't trust that she could do it if he wasn't lying flat on his back on a bed. She missed the first time and had to wiggle the needle around to get him accessed, and then was very weird about having him hold perfectly still through the whole thing. (sigh) Then, we had to wait around another 30 minutes or so to see the attending doctor, who didn't really do anything but give us her name and repeat a few things that the fellow had said. And Spencer was begging to leave the whole time--and I mean the WHOLE time. And there were no toys in the rooms. No Child Life Specialists. A few volunteers (old gray haired women--a far cry from the likes of Allie) who poked their head in the room for a minute to tell us that Bingo was on Channel 8 at 10:00, and then left again. They do have a play room, but they don't let the kids hang out there. Spence got to play for a total of about 1 and a half minutes before they rushed him back for vitals and then sent him into our toyless room to sit for 1 1/2 hours. It was frustrating to me. I was trying not to cry as we left. Mike says the problem is that we got spoiled in Texas. The staff and everyone at 'Specially for Children is just so outstanding, especially Jennifer. So, no one can live up to our standard, because our Texas clinic set the bar too high. Anyway--Jennifer, if you're out there, we have a spare bed for you at our new house and you are welcome to come live with us at any given time--we don't even need any advance warning. Just show up at our door!

We did get Spencer's one-year-off-treatment scans set up for November 9th. They will use sedation, so hopefully we will get a better picture than last time. Then, we have port removal scheduled for November 10th. And, if all goes according to plan, ALLIE is coming the night of the 10th to spend the weekend with us. It will be good medicine for Spencer. I think he's going to have a really hard time without his port, but after watching them access him today, I don't think it could be much worse. He actually thought that the nurse took his port when she deaccessed him today, and he freaked out. "I NEED my PORT!" And then he grabbed his chest and felt the port and settled down a little. It was a really discouraging experience for me. I'm really grateful that we were in Texas last year, that we had Jennifer for a nurse and Allie for a volunteer, and the fishy room for Spencer to play in. I think if we had been anywhere else, it would not have been as good of an experience for Spencer, and I'm thankful for that blessing. Hopefully our oncology visits will be fewer and farther between now and it won't be such a big deal that the clinic isn't as great as the one we just left. And we'll adjust, I'm sure, but I'm sure missing Texas right this minute.

We close on the house in a few hours. I'm very excited to get it done and get moved in. We'll hopefully get to move in this weekend, if everything goes according to plan. We took Spencer with us last night to go through the house again, and he really liked it this time. He thinks the deck and the back yard are pretty great, and he cried all the way back to Grandma's house that he wanted his NEW house. Hopefully getting settled will help him (and me) feel less homesick for Texas. The other night, he was almost hysterical, crying for Texas. "I NEED Texas! I don't want to be in Utah! I need my Texas house and my Allie!" Poor kid. As we left the parking lot of the children's hospital after his check up this morning, Spencer piped up, "I wanna go to the Fishy Room now!" Big adjustments ahead, that's for sure.

The weather is getting chillier and chillier. Some of the mountain tops have snow, and the leaves are all turning colors, even down in the valley. It's a fun time of year. The kids are getting excited for Halloween, and Annie is already counting down the days until Christmas. We are happy to be here and excited to see the seasons change and spend so much time with family, but I think a part of us will always be in Texas. When we moved there, four years ago, I kind of laughed at the state pride--how everyone thought that Texas was the best thing that ever happened to the world. The more I lived there, the more I started to believe it. We have so many dear friends there. We miss all of our church friends, our cancer friends, our clinic friends. We hope they know how much they've meant to us.

Well, I'm off to buy a house. Thanks for stopping by.

Shauna

Monday, October 10, 2005 9:29 PM CDT

Happy Anniversary to us! We've been married eight years today. We're back from Idaho. Mike ended up going with us after much coersion from his wife, and we were all happy to have Dad along. I'm not going to even attempt to recount all of our goings on there, as they were numerous. I'll just give a few highlights from the trip.

1. Annie caught her first praying mantis and named her Plesa. She and Mike caught grasshoppers for a few days for Plesa's meals before Annie agreed to free her. It was a very hard decision for her, as she really, REALLY loved Plesa and wanted to keep her forever. But, after much thought and several pages of diary entries that say things like "I LOVE PLESA. WHAT SHOULD WE DO FOR PLESA. WHAT IS BEST FOR PLESA," she decided to let Plesa go. It was very sweet, and she cried after Plesa was gone. Oh, and she has written new journal entries just about every day since, complete with colored, hand-drawn portraits of Plesa so that she will never forget her dear friend, Plesa the Praying Mantis.

2. Spencer tried to bite his tongue off, and almost succeeded. He was on the little step stool in the bathroom and decided to jump off, not accounting for the countertop that was in his way. I was in there with him, and he banged his chin pretty hard on the counter, and then came up off the floor with a mouth FULL of blood. It was quite the mess, and he was really hurting, but we all survived the trauma and his tongue is healing slowly but surely.

3. We had a fun day going to a pumpkin patch, complete with a hayride pulled by an old-fashioned tractor, a hay bale maze for the kids, and a bunch of farm animals, including pigs, sheep, and turkeys. The kids all got to pick a pumpkin from the patch. The only rule was that they had to be able to carry their pumpkin out by themselves. Sophie and Spencer took the conservative route and picked little baby pumpkins. Annie, on the other hand, decided to test herself and picked the biggest pumpkin she could heft. They were all very proud of themselves and had a really fun time. If my sister emails me pictures from the day (hint, hint, Karen), I'll post them in the photo album. It was really fun.

4. Sophie lost another pair of shoes somewhere along our route. Mike and I got a few nights alone to celebrate our anniversary. Annie spent a morning searching for little animals that might need to cuddle to keep warm, since the weather is turning very chilly. And we all had a really good time visiting with family in Boise and Aberdeen.

So, that's the highlights. As for the week ahead, tomorrow Spencer has an appointment with a pediatrician here so that he can give us a referral for Spencer's appointment on Wednesday with Primary Children's Hospital Hematology/Oncology. He needs to get his port accessed again and have a check up. We also need to schedule his November scans. The whole thing terrifies me--switching doctors and hospitals and starting over again building trust with new physicians. I guess I just have to bite the bullet and get it all over with. Tomorrow is also our final walk through of our new house to make sure that everything is up to expectations, and then we close on Wednesday afternoon. Wednesday is also preschool for Sophie and Spencer. Friday the carpets are being cleaned and we can move in Friday night or Saturday morning. Very exciting stuff. We can't wait to be in our own place again.

So, Happy Anniversary to us. We were going to go up in the mountains this afternoon, but our van is having brake problems, so we decided to go to a park and have Wendy's chicken nuggets for dinner with the kids. But, it was REALLY chilly and windy and Sophie spilled her ice water on her pants, so that got cut short, too. We ended up coming home, baking cookies, and watching "The Rescuers Down Under." It's been a quiet day, but it was kind of nice to just sit back and relax for a day before everything picks up again tomorrow. We are grateful for our eight years together. It's been an adventurous journey, but it's good to go through life with your best friend, and we feel really blessed. Thanks for stopping by.

Shauna

Saturday, October 1, 2005 11:16 AM CDT

We haven't made it to Idaho yet. Our trip got postponed, but I'm planning on driving up with the kids tomorrow morning. Tuesday night, we went and visited MY aunt and uncle, Ralph and Chandra. Ralph has an awesome salt water aquarium, which entertained the kids for hours. Ralph also let the kids help him feed his cow. You can imagine Annie's joy to realize that she had a relative who is a FARMER! Wednesday was preschool for Spencer and Sophie ("I LOVE the letter E, MOM!") Thursday night I played volleyball at the church and had a great time. Yesterday, we went winter clothes shopping for the kids. It was fun, but tiring. I'd forgotten how much more diverse of a wardrobe one needs living in a northern climate. We also went to visit Aunt Melissa and her kids, to see their new pet--Meg, the bearded dragon. The kids were very impressed not only with Meg, but also with the pair of pet gerbils there, too. Melissa has offered to let us have the gerbils when we get settled in our new home. At first, Annie was convinced that only a gecko would do for a pet, but after spending some time playing with the gerbils yesterday, she's had a change of heart and has decided that gerbils will do quite nicely as pets. We'll see what Dad thinks...

Today and tomorrow is General Conference for our church. The church leaders here in Salt Lake City speak to the entire church in four different meetings (2 today, 2 tomorrow), and it is broadcast worldwide on satellite and radio. Mike and I are excited, because we were given tickets to attend in person for the afternoon session this afternoon at 2:00.

Wish me luck tomorrow driving alone with three small children! Thanks for stopping by.

Shauna

Tuesday, September 27, 2005 4:21 PM CDT

*NEW PHOTOS ADDED*

Never a dull moment at the Jones household, that's for sure. We had a fun evening yesterday. We went out to eat at Chili's, since all of their profits yesterday went to St. Jude's for childhood cancer research. Our family, along with Mike's parents, met up with Mike's Uncle Jay for some good dining. Last night, after we got home, Annie started complaining that one of her back teeth hurt. The complaining soon turned into wailing and screaming, and it was after midnight when she was finally able to fall asleep from sheer exhaustion. So, this morning, we went to the dentist. She had a major cavity. The dentist said that if it had been a permanent tooth, they would have done a root canal. But, since it was a baby tooth, they just numbed her up, dug out the decay, packed in some nerve deadening material, and filled it. She's feeling much better now, and is really excited about her first cavity. (?) She said, "Mom, we have to have a party tonight to celebrate my very first cavity!" Mmmmhmm.

I also set up an appointment for Spencer with the dentist for October 17th. It will be his first ever dental appointment, and I'm a little nervous about the whole thing. He, on the other hand, is very excited about the whole thing. He keeps saying, "Let's go to the DENTIST, Mom!" I hope he keeps his enthusiasm once we arrive and they want to look in his mouth. We'll see.

I'm planning on heading to Boise tomorrow with the kids to visit my sister and her family, and then we'll head over to Aberdeen to visit my parents for a while. Should be fun, but I'm not sure how often I'll get to update.

Oh, a big THANK YOU to Briana and Madison Roehling. We got a package in the mail from them with homemade hats and scarves for each of the kids in their favorite colors. They wore them around the house for a long time after we opened the package (even though it was probably around 80 degrees inside at the time). They are a big hit and I'm sure we'll get lots and LOTS of use out of them this winter. Thanks, ladies!

Well, I'd better get going. Thanks for stopping by.

Shauna

Saturday, September 24, 2005 2:03 PM CDT

I caught the stomach bug and spent night before last vomiting every hour and a half. Yesterday was a little better, but I didn't dare eat anything, because my stomach was still very unsettled. Today I'm feeling less queasy and mostly just wiped out from not eating for so long. So, it seems that Grandpa Jones is the only one who has escaped the nasty bug in this house, and we're hoping that stays true.

Today, I went in Annie's bedroom, where she was playing with her dolls. She said, "Well, it looks like Sophie is turning out to be a pretty good baby afterall, huh, Mom." I smiled and said, "What do you mean?" She replied, "Well, she's not so fussy all the time and doesn't have to have you hold her all the time, and she plays with me a lot now, so I think it's all turning out pretty good, don't you?" I guess it is...

All of the kids are getting to be really good playmates most of the time. Annie's imagination is so vivid, and she has shared that gift with her younger siblings. They are constantly playing pirate or doctor or going on some pretend adventure or another. Spencer has started saying, "Just pretend, Mom," when he wants something that isn't so. He'll tell me a rock is a lizard, and I'll go to correct him, and he says, "Just pretend, Mom. Just pretend." Ahh, the joys of childhood. So fun to watch.

We are doing well. We're glad that Rita wasn't as bad as some predicitions, and that everyone we know and love is safe. My cousin made it to San Antonio safely (after 15 hours on what should have been a 3 hour drive), and my uncle rode it out with his wife and children at home, and last heard, still had power and all his windows intact.

I'd better go. Thanks for stopping by.

Shauna

Thursday, September 22, 2005 6:06 PM CDT

New Photos Added

Hey, y'all! Our hearts and thoughts are going out to our Texas friends and family as Hurricane Rita approaches. My uncle and cousin live in Houston, and my cousin and her family are trying to drive to San Antonio for the weekend. Last I heard, they had been driving 5 hours and gone 40 miles. The roads are PACKED! My uncle is probably going to end up staying and riding out the storm in the church building (built to withstand a Cat 5 hurricane) unless the roads open up before then. We are praying that everyone stays safe and dry.

Things here are going well. Tomorrow, we are heading out to the new house for the inspection, and the appraisal is being done today. We're hoping to close around October 15th. The kids are over the bug that is going through the house, but Mike has it now and is feeling pretty crummy. Grandma Jones also got it and has been down for the past few days. Hopefully it will pass soon.

I think Sophie has been living with Grandma Jones and Grandpa Jones a little too long. She now calls everyone in the family whatever-their-name-is Jones. She'll be in "napping," and I'll hear, "MOMMY JONES! MOMMY JONES! I NEED YOU MOMMY JONES!" Or she'll ask, "Mommy Jones, where's Daddy Jones? Where's Annie Jones?" She likes us all to call her "Sophie Jones," too. It's pretty funny.

Spencer loves preschool. I taught this week, and we learned about the letter D. We, of course, had a dinosaur theme to go along with it, which Spencer thought was the best. Ever since, he's been going around saying, "The letter D! It's the letter of the day!" and "I LOVE the letter D!" Every week is the same thing, "The letter A! I love the letter A! The letter B! I LOVE the letter B!" It's good to see him so excited about learning.

Well, I'd better get going. To all our Texan friends, our thoughts are with you. Hang in there. We hope the storm passes soon.

Shauna

Tuesday, September 20, 2005 11:29 AM CDT

So, apparently Spencer's sickness was NOT from something he ate, but a bonefide bug, because last night, Annie threw up every 30 minutes ALL night long, and Sophie followed suit. Poor girls (and poor Mom and Dad) didn't get much sleep to speak of, but the girls seem to be feeling a little better this morning, and will hopefully continue to improve as the day wears on.

I talked to Joy this morning, and they are getting settled into their house in Vegas. Kenneth just started school there, and loves it. Sophie keeps begging to go to Joy Joy's house, and Annie has written many, many letters to Kenneth telling him how much she misses him. We finally actually stuck one of the letters in the mail yesterday. Spencer still wants his house in Texas, and keeps telling me that he NEEDS Allie. It's an adjustment, that's for sure.

Last night, we went for a drive up in the canyon to look at the fall leaves changing color. It was nippy, but it was beautiful. We hiked up to a little waterfall, and the kids threw rocks in the water. As we drove back down into the valley, the city lights were gleaming--it was so pretty. We all had a good time.

Well, I'd better get going. Thanks for checking on us.

Shauna

Friday, September 16, 2005 10:28 PM CDT

(Sunday, 12:50pm) We got the house! They accepted our offer, so as soon as the loan stuff gets worked out, we can close and move in. Happy day for us! We took the kids and Mike's parents to see it last night, and while we were there, Spencer got sick. We think it was from something he ate earlier, but the color drained from his face, and the minute we got back to Grandma and Grandpa's house, he heaved all over the floor. (sorry for the details) He is feeling better today, but he's convinced that his "other house in Utah" made him sick and that he wants to go back to his house in Texas. Sigh. Well, we'll have to work on that one. Anyway, thanks for checking in. I'll write more later.

Just a really quick update. We made an offer on a house today in West Jordan (south and west of Salt Lake City). We'll know by tomorrow night if it's accepted or not. We're very excited about the prospect of being in our own house again, although the kids keep trying to convince Mike and me that we can just live with Grandma and Grandpa forever, and there's no real need to have two houses when we all are together and happy in one.

We'll let you know when we know anything more. Also, Anna had surgery today. She should be getting out soon. Please keep them in your prayers.

Thanks for stopping by.

Shauna

Wednesday, September 14, 2005 2:01 PM CDT

Okay, we are WAAAYYY overdue an update, right? I'll try to keep this short and sweet and informative. We are back with all of our stuff, some of it a little worse for wear, but we survived the 24 hour drive ONCE again, and Spencer did great the entire way. Last Thursday, we went to the oncology office (a.k.a. the fishy room) for a check up and over FOUR hours later we left with a clean bill of health. Spencer's port had a clot in it, and Jennifer couldn't get blood from it, so we spent hours trying to get the clot dissolved and blood to flow. Jennifer was about to stick him in the arm, when we finally had success getting blood from his port. (sigh) It was a long day for Mom, but Spencer thought he was in heaven being there with Jennifer for hours on end--just like the good ol' days of all-day chemo treatments. Crazy guy. How many other cancer patients do YOU know who LOVE to hang out at the oncology office? Yeah, me neither. He was so happy to be back in Texas. He gave Jennifer several loves and even was chatty and friendly with Dr. Sharp. It was fun to see.

Mike calls our visit "Spencerfest 2005," and rightly so, because the little guy certainly got spoiled while we were back in the Lone Star State. Allie picked us up from the airport, and Spencer and Allie spent every spare minute she had together from that point on. She took him to the pet store one evening to look at all the animals there. They played dinosaurs until the cows came home. She even spent the night Friday night before we left, and he was up WAY past his bedtime playing games with Allie. She had to get up early for a cross country meet Saturday, so she left before Spencer woke up. FIVE minutes later, he woke up crying for Allie. ("I just need Allie, Mom. To talk to her and look at her.") So, the whole trip back to Utah, (well, about 23 1/2 hours of the 24) Spencer kept saying, "We're not going to Utah. We're going back to Texas. 'Cause I need my house and my stuff to go in my house. We need to go back to Texas. I love Texas, and I love my house, and I need my house. I miss Allie, and Jennifer. I need to go home now. I just love Texas," and, well you get the picture. FINALLY, about 1/2 hour before we arrived at Mike's parents' house, Spencer said, "I think I want to go to Grandma's house and see Annie and Sophie." WHEW! He still misses Texas, but he's happy to be back with his sisters.

Yesterday and today we've been seriously house hunting. We saw a bunch of houses yesterday, and more today, and we'll see a bunch more on Friday. We are hoping to find THE house soon so that we can get settled and on with life.

Spencer and Sophie had preschool today. They had a ball, and made some very cute artwork. Annie is still enjoying school and is getting really good at reading. She has also taken a keen interest in her cousin Zach's gecko. It's actually a little souveneir from Texas that hitched a ride to Utah in the back of the moving truck, unbeknownst to us. Zach caught it and has taken it for a pet. Annie LOVES the gecko, and spends any free minutes that we'll allow watching it and helping to take care of it.

Okay, I'm off to break up a fight. SOMEONE needs a nap--and I'm pretty sure that if it's not Spencer and Annie--it's me. Thanks for stopping by. We appreciate your love and support.

Shauna

Tuesday, September 6, 2005 11:04 AM CDT

UPDATE: (WEDNESDAY, 9:22am) MIKE HAS A JOB! YEA! CSC CONFIRMED THAT HIS POSITION WITH THEM IS LONG TERM AND HE HAS EMPLOYMENT STABILITY!!!!! Hooray! We are so relieved. We are also planning on renting to the Katrina victims, pending credit check and background check, and they are considering buying at the end of the year, so that's one less stress. Things are looking up. Spence and Sophie have preschool this morning, and then we head off to the airport. YEA! Wish us luck.


AAAUUUUUUUUUGGGGGGHHHH! The stress is taking over around here. We have someone who wants to rent our house--that's good news. It is one of the hurricane Katrina victims--and that's good news and bad news. It would be great to be able to help someone out, but they only want to do it for 90 days while they wait to assess their losses in New Orleans. That leaves us with a house to rent again in three months, and by then we'll almost certainly have a new mortgage to worry about as well. They also, of course, have no job or regular income, so it's taking a risk on whether or not we'll get paid rent or not. Apparently the Red Cross and family members are helping them out financially, but there are a lot of unknowns. We're waiting to hear from our realtor today to weigh the pros and cons of the whole thing. We're leaning towards doing it, if they pass the background check. We'll let you know how it goes.

We also found out today, that, unbeknownst to us, Aetna and CSC up and switched our insurance plan from an HMO to a PPO plan the beginning of August, and in doing so totally dropped Spencer and Sophie from any coverage at all. AAAAUUUUGH! We've spent all morning on the phone trying to figure out what the HECK is going on, and how to fix it as soon as possible. I told the last Aetna person that I talked to on the phone this morning that we were flying my son to Texas to visit his oncologist on Thursday morning, and we need him to have INSURANCE by the time we go! It's so frustrating that the people who make these mistakes and changes suddenly become invisible when it comes time to fix the problem, and no one seems to have any power to do anything to rectify the situation. It's maddening!

Mike should hear more from CSC today about the new contract they have him working on, and how long term it will be. We are also hoping to hear from JP Morgan on the other job that he's in the running for. We're hoping to have some solid idea of our work situation by the end of the day. But, you never know.

Tomorrow, we head for Texas. Spencer's check-up is Thursday morning at 9:00am, and then we head straight to pick up the moving truck and start loading up our belongings. I guess it's all good timing, if we are leasing our home soon. Annie is really sad that she isn't coming with us, and cries every time the trip is mentioned. Sophie doesn't understand the whole thing, but I know that she will be really sad when we leave her, too. Spencer, on the other hand, is very excited to ride on the airplane and have Allie pick us up at the airport and see Jennifer and Dr. Sharp and the fishy room. He will also be very excited to see his dinosaur stash again, which we left in Texas for lack of space on the first trip up.

Our little friend Anna, isn't doing well. Her tumor isn't responding to the new chemo regimen and is continuing to grow. They are heading down to Salt Lake today to beg for a scheduled surgery, which their oncologist was unable to arrange on Friday. The surgery will be very invasive, but seems their last hope. My heart is breaking for Anna's mom and dad. Please leave them some words of support in her guestbook if you can. They are in our prayers.

It really makes me so thankful for the relative smoothness of Spencer's treatment. Everything happened on schedule and as well as could be expected. There are so many ways for things to go wrong, but things went right for Spence. We are very humbled by that fact, as we watch other children head down less hopeful roads in their treatments. Thank you again, everyone, for your prayers and support for our family. We appreciate it.

To end on a happy note, we camped out Sunday night in the backyard. It was our first family camp out, and Grandma and Grandpa Jones joined us in our new tent. It was quite the night! The kids played musical beds for the first hour or so. ("I want to sleep by Grandma." "No, I want to sleep with Dad." "No, I want to sleep by Mom.") Then, they just had a hard time going to sleep with all of the excitement. Additionally, it got quite chilly, and so everyone was cold all night long. But, we all stayed in the tent through the entire night, and the kids thought it was just about the coolest thing they'd ever done in their lives. I'm thinking we may be ready for a real campground next time.

I'd better get going. I may not get to update until we're back, hopefully late this weekend. If we can get an internet connection, I'll update from the Lone Star State.

Shauna

Friday, September 2, 2005 2:42 PM CDT

Spencer got a haircut! I posted pictures in the photo album. He sat very quietly for most of it and was a very good boy. Grandma and Grandpa are out of town for a few days to celebrate their 38th wedding anniversary. Very fun!

We are hoping to find a tent today and do a little camping this weekend. The campgrounds will be packed because of Labor Day, so we'll probably just camp in the backyard, but I'm sure the kids will have a blast anyway.

Life is good, if not a little (lot) stressful. We are still trying to find someone to lease/buy our house in Texas, so far to no avail. We're waiting to hear back on one of the jobs that Mike interviewed for, and it seems that we have a job with CSC if we want it. The Sears contract ended August 31st, so we were expecting to be laid off this week, but CSC is keeping Mike on for now, trying to find a new project for him. We'll see. We need to find a new house, too. We have faith that everything will come together, but it sure can be stressful waiting for it to happen.

I told Spencer yesterday that we're taking him to Texas, and he'd get to see Jennifer at the fishy room. He said, "Jennifer's at the fishy room! WOW! I LOVE HER!" Then I told him that Allie would meet us at the airport, and he said, "ALLIE!?!? WOW! I JUST LOVE HER!" So, I think he's a little excited about the whole thing. :0)

We're looking forward to the weekend. Hope you have a Happy Labor Day. Thanks for checking on us.

Shauna

Wednesday, August 31, 2005 4:15 PM CDT

PHOTOS ADDED

More and more fun here in Utah. On Sunday evening, we had a big Jones reunion to celebrate another cousin birthday. Sierra turned a big 1, and we had lots of good food and visiting to celebrate.

School is in full swing. Annie and I are both enjoying first grade even more than kindergarten. Come to find out, Annie is quite the little math wiz, and loves to skip count. She also likes that at our school we get to have art class every day. :0)

Spencer and Sophie had their first day of preschool today, and although Aunt Melissa looked a little frazzled by the time I picked them up, the kids were thrilled and had kept telling me how fun school was. Spencer kept saying, "MOM! We learned about the letter 'A'. I LOVE the letter 'A'!" It was cute. After preschool, we headed down to Lehi to the brand new Cabelas that just opened there. They have aquariums and tons of taxidermied animals in natural settings. We met Joy and her kids there and the kids LOVED it. It was fun times for everyone. Kenneth came back to Salt Lake with us to play for the afternoon, and Joy will come pick him up this evening.

Mike is closing in on a few job offers, hopefully. We'll let you know. The weather here is so much cooler than Texas. Annie's convinced that tomorrow, September first, all the leaves will turn colors and fall off, cause it will be fall, and that's what happens in fall in Utah. We'll see, won't we.

I'd better get going. I hear the kids upstairs begging food off of Grandma. I'll go give her a hand. Thanks for stopping by.

Shauna

Sunday, August 28, 2005 10:59 AM CDT

UPDATE (10:00pm)--Okay, Allie. Mike and I decided to bring Spencer with us, since he's going through Texas (mostly Allie) withdrawals. We're going to try to get a check up appointment at the fishy room while we're there--and hopefully some Allie play time, too. I just hope he can handle the drive to Utah the second time as well as the first. Is it too much to hope?

New Photos Added (I'll put some pictures of the mountains up soon, I promise!)

We are keeping very busy here. On Friday, we took Annie and Spencer on a hike with Grandpa Jones and a few of the younger cousins. It wore my kids out, but they had a great time. Spencer was filthy by the time we left, as he thought he had to pick up and throw every rock he found. We hiked up to a little bridge crossing a stream, and the kids loved throwing stones in the water and standing on the bridge.

Yesterday, was a birthday party for cousin Emma, who is turning 4 in a few days. They had a pinata and played and ate birthday cake and ice cream and had a great time. Today after church, we are heading north to Roy for another cousin birthday party, and have a third later next week. It's kind of culture shock for us to have so many family get-togethers, but we are enjoying ourselves.

Mike and I have plane tickets to head back to Austin on September 7th to pick up the rest of our stuff from the house. We'll drive back that weekend. Mike has another interview tomorrow, and school starts then, too. Annie and Spencer are very excited for school. We bought a huge, loud alarm clock for our school bell, and Annie can't wait to use it. We'll let you know how it goes.

Thanks for checking on us. We appreciate your continued love and support. Have a happy Sunday.

Shauna

Thursday, August 25, 2005 10:33 AM CDT

Idaho was a hit. We saw my parents, both of my grandmothers, my cousin and her family, my sister and her family, and a bunch of old friends at church on Sunday. The kids all cried half way to Utah for Grandma and cousins, but they did pretty well on the trip home considering.

Yesterday was a really busy, fun day. We rode Trax (a light rail system that takes commuters in and out of downtown Salt Lake). The kids loved it. We went with Mike's mom and his sister and her 4 children. Mike's dad works downtown at the Church Office Building, and he met us there and took us to lunch at the cafeteria at his work. The kids had a good time. They have a pianist who plays hymns and Primary songs during lunch, and Annie got to request a song. It was cute--we were sitting there eating lunch, and I wasn't really paying much attention to the background music, when Annie burst out, "MOM! It's 'A Child's Prayer'!" and then proceded to sing at full voice all the lyrics she could remember. It was quite amusing.

After lunch, and a trip to the look out area on top of the Church Office Building (26 floors up), we took the train back home, and Sophie caught a short nap before we headed down to Lehi to see Joy and crew. Sophie was so excited to see Joy again. As soon as she got out of the car at Joy's sister's house, and before she ever caught sight of anyone, she was yelling and running for the house, "JOY-JOY! JOY-JOY!" It was a happy reunion. The kids played and we visited, and then Mike kindly watched the kids while Joy and her sister, Elise, and I went to dinner. It was a fun evening, which of course ended in weeping and wailing when it came time for Joy and Kenneth and Daniel and Caitlin to go back home. Sophie cried herself to sleep saying, "I want Joy Joy to come back to me!" Lucky for her, Joy and her boys are coming back to play today. But, come September 1st, when Joy heads back to Vegas, it will be a truly sad parting.

Oh, and this morning when the phone rang, I said, "That's probably Joy." Spencer piped up, "No, it's Allie." He's decided that since Joy is here, Allie must be somewhere close by, too. Don't we wish...

I'd better go check on the kids. They're being a little too quiet.

Thanks for stopping by.

Shauna

Monday, August 22, 2005 10:39 AM CDT

Just a quick note from Idaho. The kids are having a great time playing with more cousins. Annie and my sister's daughter Abby (7 years old) have become fast friends and have done everything together since we arrived. Abby has spent the night with Annie every night we've been here and they've been doing all kind of fun, girly things together, like painting fingers and toes, putting on body glitter and using Grandma's makeup for dress up. Spencer is finally settling in, and after church yesterday, I said, "Spence, should we go home?" He said, "NO! I don't wanna go home. I wanna go to Grandma's house!" Yea!

We're heading out of Aberdeen today to visit the "big city" of Pocatello. We're taking the kids to a petting zoo, to visit my cousin and her kids, and to see my Grandma Hayes in the assisted living center there. I don't think my kids had any idea how many cousins they really had--they think they've gone to heaven.

Mike surprised us all and showed up Saturday morning to spend a short weekend with us. The kids were all thrilled to see their dad, and I was, too. This is, I believe, the first surprise that Mike has actually pulled off in our entire marriage. He and I keep secrets from each other about the same--terribly. He always ends up telling me about it beforehand--what I'm getting for Christmas, what we're doing for our anniversary, and, well, you get the picture. But he was very tricky this time, and it was a huge surprise to have him walk into the room on Saturday. He headed back to Salt Lake yesterday and has an interview this afternoon that we're hoping goes well. He still hasn't gotten his official offer from Sears, but we're expecting it any day now. We're hoping to have something else lined up so that he can turn them down. We've become really turned off to Sears and their business ethics. Keep your fingers crossed for something new to come along.

One cute story before I go. Last night, we were all settled into bed. I was in one room with the little kids, and Annie was in the other room sleeping with Abigail. I was just falling asleep when Annie opened my door. I started to say, "What's wrong?" but before I could, Annie said, "Nothing's wrong, Mom. I'm just really happy that you're my mom." Then she came over and gave me a big hug and ran back off to bed. Those moments that make parenthood all worth while...

Well, I'm off to the petting zoo. Thanks for checking on us.

Shauna

p.s.--I've got some cute pictures that I'll add as soon as I get back to Utah.

Wednesday, August 17, 2005 10:50 PM CDT

The adventure up to the mountains on Monday got rained out, much to Annie's chagrin. However, we ended up roasting hotdogs and marshmallows in the back yard, on the patio, under an awning, safe from the rain, and I think that made up for almost everything in her book. It was a fun evening.

Yesterday, Annie and I headed down south about a half an hour to Saratoga Springs, Utah, to visit Joy's sister Elise. It was great to visit with her, and Annie loved playing with their BIG dog Doc. Last evening, we tried to go for a family walk around the neighborhood and got rained out just a little ways into it. (Rain two days in a row--and I thought Utah was a desert :0)) It's been nice, though, the weather has been really cool and pleasant the past few days, which makes spending time outside really enjoyable. The kids have been playing in Grandma and Grandpa's back yard a lot--it has big trees and lots of grass--perfect for little kids to run around.

Tomorrow morning, I'm taking the kids to a park. I'm going to do a preschool co-op for Spencer and Sophie with Mike's sister and some of her friends. Should be fun. Tomorrow morning we're meeting to make plans. I'm sure the kids will love it. Then, I'm heading up to Idaho with the kids to spend some time at my parents' house. Mike would love to come, too, but he has work and job interviews, so he'll stay here, and we'll be back around Tuesday or Wednesday of next week. Joy and her kids are coming up to Utah to spend next week with her mom, who lives in Lehi (about 30 minutes south of Salt Lake City), so we are hoping to get some good playing time in with them while they are in the area. I think it will do the kids good to have some familiar friends to play with for a while. Joy and Steve just made an offer on a house in Vegas yesterday. I haven't heard if it's been accepted or not, but we're hoping so and that they can get settled into some place permanent soon. We miss them.

Well, I'm off to bed. I'll try to do an update or two from Idaho, but my parents have dial up, which takes forever and is unreliable, so no promises. I'm sure we'll have fun, though, in the good, clean country air. I'm hoping to get to visit Anna, our little rhabdo surviving friend there. They will be doing LOTS and LOTS of chemo in the upcoming weeks and can use all of the support they can get. If you get a chance, please go sign Anna's guestbook. Being in the throes of cancer treatment is such a lonely, difficult time, and it makes such a difference knowing that there are people out there thinking of and praying for you.

Thanks for stopping by.

Shauna

Monday, August 15, 2005 11:08 AM CDT

Where have the days gone? We have had some really fun activities in the last few days. On Friday, I took the kids to a nearby park where they got to play with almost all of their Jones cousins. They had a great time sitting in the grass and playing in the dirt (two things that are never a good idea in Texas on account of the fireants). Friday evening, we went over to Mike's brother's house and the kids played more with cousins and we played games. On Saturday, one of my dear friends from highschool drove through Salt Lake on her way back home to California, and we had lunch at Los Hermanos--our favorite Mexican resaurant in Provo (a town south of Salt Lake, home of Brigham Young University, our alma mader). It was good memories and really fun to see Cheryl again. It's been over 5 years--way too long.

Saturday night was more Jones reunioning. We saw more of Mike's brothers and his sister and their families. It is so nice to be around family again. Sophie is taken with the baby cousins and likes to giggle at them. Spencer made friends with Emma, his cousin that is his age. We could hear them laughing and laughing from the back bedroom where they were playing. Annie is just in heaven with all of the cousin friends. It's funny, she told me several times in Texas that she knew what cousins were--they were people that we love that live far away from us and who we write letters to and send cards and stuff. I couldn't convince her otherwise. So, a couple of days ago, Annie piped up and said, "HEY! Now Kenneth can be my cousin, cause he's far away and I can write letters and send presents and stuff!" I tried to talk her out of it by explaining that cousins were the kids of Mom and Dad's brothers and sisters, but she said, "BUT! You and Joy are sisters cause you have the same name. (My middle name is Joy) I want to be Kenneth's cousin!" So, I finally conceded and told her that she could be Kenneth's cousin if she wanted to. That made her happy.

Yesterday, Spencer was having another bout of homesickness, so I called Allie and let her talk to all of the kids. She said that when she talked to Spencer she said, "Spence, are you having fun with your grandma and grandpa?" He said, "No, Allie, I want to play with you." She said, "But aren't you playing with all your cousins and having so much fun?" Spencer replied, "Allie, I just want to come home." It makes me sad. He is really having a hard time. This morning I said, "Spencer, we live here now." He said, "No, this is Grandma's house. I want my house. I want to go home." (sigh) I'm hoping that things get easier for him soon. He's a resilient kid and I know that he'll be okay, I just hope the adjustment happens soon.

This evening, we are heading up the canyon for a hot dog roast in the mountains. The kids are very excited. It's so fun to have cool mornings and evenings. It feels really nice, although you can tell we are Texans by our children. Yesterday morning, Annie, Spence, and Sophie went out to play and all ended up coming in to wrap up in their blankets to get warm. They finally went back out to play wrapped up in dish towels so they could stand the cold (It was maybe in the 60's). It makes me laugh.

Anna, the little girl from my hometown in Idaho that has rhabdo, just had scans and her tumor is growing. They hadn't done surgery or radiation yet and now have to start over with tests and scans today and probably a hospital admit tomorrow afternoon. Please keep them in your prayers. She now has a caringbridge site, and as soon as I get permission from her mom, I'll tell you how to get there. She is a cute little 2 year old girl and my heart aches for her family.

Well, I'd better get going. Thanks for stopping by and checking on us. We appreciate your support.

Shauna

Wednesday, August 10, 2005 5:02 PM CDT

We're here in Utah. Mike and I ended up doing the drive straight through. The kids were SOOO good. We did the whole thing in 23 hours. We're still recovering from sleep deprivation, but we're here safe and sound. Sophie and Spencer are struggling with missing home. Sophie spent at least an hour last night sobbing for Joy. Spencer just wants his routine back, and keeps saying, "It's time to go home, Mom." Annie is thrilled to be here and enjoying every minute of Grandma and Grandpa and cousin time. Mike has had two interviews so far, and we're looking at a few different jobs. Insurance coverage has become a key draw on any job we consider--it's stressful to look at some of the terrible benefits some jobs offer. All is going well, though, and we are enjoying the mountain views. Spencer keeps saying, "I'm in the MOUNTAINS! Look, Mom! I'm in the MOUNTAINS!"

Hopefully soon we'll all get caught up on sleep and adjust to the changes. Sophie is running a fever since yesterday, and I'm debating whether or not to take her in, and who to take her in to if I do. I'm hoping it just runs its course in the next day or two and it won't be an issue.

I have to go break up a fight. Thanks for checking on us.

Shauna

Saturday, August 6, 2005 8:15 PM CDT

Our last night as Texans. I'm a big bawling mess. I just said goodbye to Joy and Steve. We'll see them in the morning just for a few minutes at the blessing, and then we're heading out. It's hard to imagine life without Joy across the street. It's been four wonderful years of friendship, and we all feel so blessed to have been placed next to each other. We'd been here in Texas all of maybe 2 days when Joy knocked on my door and introduced herself as my neighbor. She had a 2 year old (Kenneth) and I had a 2 year old (Annie), and just a few weeks later, Annie was staying with them while I went to the hospital to have Spencer. They have bailed us out too many times to count. They were our salvation during Spencer's year of chemo--Joy watched the girls whenever Spencer was at the hospital, and gave them a sense of consistency during a very tumultuous year. Joy and I trained for a half marathon and marathon together. We've lost and gained weight together. Kenneth is Annie's best friend, and Daniel is Sophie's best friend (actually, I think it's a toss up for Sophie between Daniel and Joy). They are our family, and we are going to be completely lost without them next door. I don't know how I'll survive it.

Allie is getting back into town tonight, and so we get to see her one more time in the morning to say goodbye before we leave. Speaking of big bawling messes--that's another one waiting to happen. If we could just shove Texas up next to Utah and Idaho, life would be just about perfect.

I gave each of the kids a backpack to fill with toys to take with them in the car. Spencer has been asking for me to help him put his backpack on all day. I help him get it on, and he says, "OKAY! Let's MOVE!" He doesn't really understand what that means, but it sounds pretty exciting to him. Annie, on the other hand, has finally been hit with the realization that we are leaving friends behind, and she has been weepy off and on all day. She had a sleep over with one of her friends, Sydne Cole, last night and had a great time staying up late, eating cookies, and watching movies. They had waffles with berries on them for breakfast this morning, and she thought that was about the best thing ever. But, when I came to pick her up to come home, she had a minor melt down about leaving all of her friends in Texas. "It will be really fun to live by Grandma, but I just can't go and leave all of my friends here. That's not very really fun." She is going to have a hard time without Kenneth every day. It will be an adjustment for all of us.

Well, I'd better get to bed. I'm wiped out and we have a big day of driving tomorrow. I'll try to not wait too long after we arrive in Utah to update everything. Here's to smooth driving...

Thanks for checking in on us. To our Texan friends, thank you for making our stay here such a wonderful one. We love you and will miss you deeply. A big piece of our hearts will always stay deep in the heart of Texas.

Shauna

Wednesday, August 3, 2005 9:16 AM CDT

UPDATE (8/5/05): Caitlin is doing well--they've decided that she's just going to be an athlete and has a naturally low body temperature and heartrate. She and Joy are on their way home from the hospital as I type.

We are finishing up packing today and tomorrow. We are pushing back our departure from tomorrow morning to Sunday morning, so that Mike can stand in for Caitlin's blessing in church Sunday morning. This week has flown by. We're excited to head back to the mountains. It will be nice to be surrounded by family again, but everywhere I go these days, I get nostalgic thinking of all the memories and happiness and friendship that we have here. (sigh)

This morning we are heading to the fishy room one last time to pick up Spencer's off-treatment trophy. It wasn't ready at his off-treatment party, and we don't want him to miss out on it. Plus, Annie HAS to say goodbye to Miss Mary, the Child Life Specialist/Artist that has been her kindred spirit through our cancer journey. So, all the kids and I will make the trip together.

Wish us luck on the move. Hopefully, the kids will be good travellers and we'll make the 24 hour drive with our sanity intact. :0) Thanks for stopping by and checking on us.

Caitlin Joy Layton was born this morning at 12:18am. She was 7 pounds, 11 ounces and 19 inches long. She's darling. Joy did an incredible job without any kind of pain medication, and the whole labor was around 2 1/2 hours from first contraction until the baby was born--onto the bed, totally unexpected--doctor missed it, nurses almost missed it--it was amazing. Joy is doing well. Caitlin is having a hard time keeping her body temperature up, and is in a warming bed in the nursery. We're praying that she starts holding her own temperature soon and can move back in with her mom. We are waiting for a call from Joy and Steve with the latest word, and then we are hoping to take all of the kids up to the hospital to see her. So exciting. It was my first experience with a labor other than my own, and it was an incredible thing to witness. Such a miracle.

I got home this morning around 6:30, and slept for a little over an hour before the day started around here and it was useless to try to sleep more. I'm hoping to catch a nap after we go visit Caitlin with the kids. Such a big day.

Joy just called and we're heading out to meet the newest Layton. I'll update more later.

Shauna

Sunday, July 31, 2005 1:34 PM CDT

New Photos Added

Life is hectic but good. On Thursday evening, Mike and I went to the San Antonio temple. It was a really nice, calming evening, and we were glad for the peace and perspective it provided. Friday, I took Annie to playgroup. When we moved here 4 years ago, Annie was 2 and Spencer was about to be born, and a group of moms from church had formed a playgroup for their 2 year olds and invited us to join. That little group continued through the years until last year when everyone hit kindergarten age. That's also when Spencer was diagnosed with cancer, and those same moms arranged to take turns bringing us dinner every Monday night through the entire year of treatment. Now that we're moving, they arranged one last playgroup to let the kids play together and the moms visit together one last time. That little group holds a very special place in my heart, and I had a hard time keeping my composure as I said goodbye. They are all dear friends.

Friday night, Mike and I went on a quadruple date with Joy and Steve, and our other friends Shalom and Gary Elder and Sean and Julie Buckley. We went to dinner at the Culinary Academy's restaurant, Ventana. Then we went to see Fantastic Four. It was lots of fun. Yesterday was more painting and packing. Oh, and we had our first house showing. Very exciting.

Today was church, and Spencer did really well in Primary again. He's on a roll. I hope it will carry over with the move. Tonight we are having dinner with Joy and her family. Wednesday is Joy's induction--we are all very excited to meet the new baby.

Sophie is having a hard time adjusting to all of the chaos and change that is going on in our lives. She doesn't like all of the packing and moving stuff around--it's throwing her world into a tail spin. She has been very clingy and weepy. So, last night, she and I curled up together and just cuddled for a long time. I think it was good therapy for both of us.

Spencer is missing Allie. He keeps asking for her. It's hard to explain things to a three year old. He is doing really well, though. His lips are red and his cheeks are rosey. He and Sophie have been pretending they are puppies for the past two days, crawling around on their hands and knees with their tongues out and yipping everywhere they go. They are quite the little friends. It's cute.

Thanks for checking in on us. We leave on Saturday, and this week will be hectic with the birth and packing and such, but I'll try to get some good updates in before the long drive up to Utah. Wish us luck, and thanks for stopping by.

Shauna

Wednesday, July 27, 2005 12:42 AM CDT

The open house last night was wonderful. We had so many of our dear friends come and visit us, it was great. We got a big Texas flag and had everybody sign it, so that we have a momento to hang in our new house to remind us of all of our friends in the Lone Star State.

Spencer's check up today went well. His counts are good, and he had a fun time playing with Mary, the Child Life Specialist. There was a tiny little boy there getting chemo--he looked so small sitting on the floor of the fishy room playing with toys. I asked his mom how old he was. She said 2. He was diagnosed at almost exactly the same age as Spencer was when we found his cancer. Looking at Spencer standing next to him with a head full of hair and red lips, it made me really grateful that that part of our life is behind us now.

Well, I'm off to Joy's house. We're spending almost every waking moment together these days, packing, painting, and packing some more. It's going to be culture shock when we move and Joy is not a few steps away every day. It will be rough, I'm sure.

Thanks for stopping by.

Shauna

Sunday, July 24, 2005 1:03 PM CDT

It's been another busy week and weekend. We had dinner on Friday with Allie and her family and enjoyed ourselves thoroughly. Allie's family is wonderful, and we have enjoyed our association with them immensely. The kids played with the pet bunnies, swung on the swings, played on the playscape, and generally got spoiled by all of the attention that they got from the whole family. Allie's mom, Susan, made a wonderful dinner with something that everyone would ooh and ahh over (which, when you include our two toddlers into the mix, is a pretty amazing thing). The kids cried all the way home, which I guess is a sign that they had fun. :0)

Yesterday was a get-the-work-done day. I painted at Joy's house for most of it, and got a good portion of the painting done. Annie went to Kenneth's (Joy's oldest) birthday party and had a ball.

Today was a red letter day at church for Spencer. Not only did he go to Primary by himself, he even volunteered and participated in a demonstration up in front of all of the children. We are so happy to see him adjusting to everything--just in time for our move and more big changes. But he's proving to be more and more flexible with change, which is encouraging to see. He's growing into quite the big boy.

Allie's here playing. It's the last time we get to see her before our move, as she is going out of town tomorrow and will be gone until after we leave. The kids are having fun, but there's sadness in the air. Allie brought a really cute, framed picture of her and Spencer, which we will cherish, and a fridge magnet that says, "Someone in Texas loves you." (sigh) It's so hard to leave people you love behind.

Thanks for checking on us. Have a good Sunday.

Shauna

Wednesday, July 20, 2005 10:28 PM CDT

Okay, sorry for being slow at updating. Sophie's iron IS low, so she's now on iron and we're hoping she's feeling better soon. I've been spending most of my days painting at Joy's house, or packing at one of our houses, or running errands, or making phone calls. The time is rapidly approaching for our move, but I'm so busy getting ready for it that I don't have a lot of spare time to stress about it.

Joy is going to have her baby August 3rd. I get to be with her in labor and I'm really, REALLY excited about it. Labor and delivery is my favorite part of pregnancy. It's such an intense emotional experience, I'm thrilled that I get to be part of the birth of Joy's baby before we're separated.

Allie came over again today and the kids had fun playing with her, as usual. We're having dinner with her family on Friday, and she'll probably come one more time on Sunday, and then she's going on vacation and we'll be gone before she gets back. We're already missing her. She was playing with Spencer today, and he climbed into one of the little moving boxes, and he had her close up the lid. She commented how amazing it was that Spencer and all his cancer and chemo and everything he'd been through could fit into one tiny little box. As I looked at it, the box really was little. Someone that fits in that little of a box shouldn't have so many trials on their resume already, but life isn't always as it "should" be, I guess. He's a tough little kid, but being away from Allie is going to be one of his biggest trials yet, I think. I asked him who is best friend was today and he said, "Allie." Not many three year olds have a 17 year old for a best friend. They're an odd couple, that's for sure, but they sure are cute together.

I need to get to bed. Another big day tomorrow. Thanks for stopping by.

Shauna

Monday, July 18, 2005 11:02 PM CDT

Spencer and Sophie's fevers are gone, I think. Spencer wore out early today, and fell asleep watching a movie in the early evening. I think his body needs some catch up sleep. I took Sophie to the pediatrician today. She has just not been herself lately, even before the fever--very clingy, very moody, not sleeping well, not eating well. It's been getting progressively worse for over a month, and at first I attributed it to being a two year old, or having some bug, but it kept getting worse, so we went in today. We were thinking she may be anemic, and Dr. Harvey agreed. The first thing Dr. Harvey said when she walked in the room was, "She looks pale to me." Then when she listened to her heart, she said Sophie was tachycardic. So, we got sent to labs for a CBC, along with liver, kidney, and thyroid function tests. We're hoping to have the results tomorrow. We'll let you know. I hope we get some answers.

Annie is having a sleep over at Joy's house tonight. I'm sure she'll have a really good time. We all went to dinner together (our family and Joy's family) this evening to a Mongolian Barbeque place. It was very tasty, except for the fact that when they were cooking my dish, they must have pulled in a jalapeno pepper from the dish they were cooking right next to mine, and I chewed and swallowed it before I realized what I had done. I have never tasted anything so hot in my entire life. I could hardly breathe--I'm sure it was very comical to watch--me, gasping for breath and reaching for anything in sight that might cool my mouth off, with no success. It was an adventure I don't hope to repeat any time in the near future.

I keep cycling from being very excited about this move to very stressed about it to very sad about it and back again. One of Mike's old friends from Sears told him today that Sears would be making him an offer soon, and that he could probably telecommute. It would be perfect except that Mike really doesn't like, or want to work for, Sears. I guess we'll examine the offer when it comes and make a decision then.

We are having an open house at our house next Tuesday, July 26th, from 5:00-9:00pm. If any of you can make it, we'd love to have you drop by and say goodbye. Joy and her family will be there, too--they are moving the week after we are, and we have a lot of the same friends so we're doubling up on the farewell party. Steve got a job in Las Vegas, so they are heading out of Texas as well. Joy is getting close to her due date, and we are all very excited to find out if it's a boy or a girl, and to get to see and hold the latest edition to the Layton family. She's due August 9th, but since they are moving on the 11th, she'll most likely be induced the first week of August. I'll fill in the details as they emerge, and I'll for sure have to take pictures of the new arrival and post them for everyone to see when the happy day arrives. Everything is happening and moving so fast, it's hard to stay on top of everything--physically and emotionally. I haven't had time for everything to really sink in. It's exciting to be nearer to family, but sad to be leaving Austin. We are going to Salt Lake first, and will be staying with Mike's mom and dad for while, and visiting my mom and dad and sisters in Idaho, and hopefully, my cousin in Denver. It will be an adventure, that's for sure. We feel like we are doing the right thing, but it's scary and emotional nonetheless. We'll keep everyone updated.

Okay, I have to get to bed. Another big day tomorrow. I need to call Jennifer and work out the details of our move as it pertains to Spencer's oncology needs. I also need to call and start cancelling services for the house. Thanks for stopping by.

Shauna

Saturday, July 16, 2005 9:19 AM CDT

NEW PHOTOS ADDED

Yesterday we had a bit of an adventure. Sophie has been running a fever off and on for the last couple of days (she still is actually). Allie came to play yesterday afternoon, and when Spencer came down the stairs to play with her, he just kind of stopped and sat down and settled in a lump on the bottom stairs. He just sat there while Allie and I visited for a while, and then I went over and picked him up and he was HOT. So, I took his temperature (102.5). Since he still has his port in, and it could mean an infection in his line, I had to call the oncology office and take him in.

Lucky for us, Allie was already at our house and agreed to come with us, because once we got there, Jennifer had already gone home for the day, and Dr. Sharp wasn't there, either. Allie blew bubbles for him while Dr. Wells and Nurse Kellie did their things and Spencer did just fine, but he wouldn't let Allie leave his sight for even a second. He got 45 minutes of Cipro (antibiotic), and very lucky for us, they let him finish it in the clinic even though it went a half hour past clinic closing. I just knew that if we got sent over to the Green Unit in Children's Hospital we wouldn't get out for a while. They usually keep their patients until the blood cultures all come back clean, which ends up being a couple of days. Spencer was a little annoyed that he was hooked up to an IV pole. We haven't had to do that since he came off treatment, and he kept saying, "I don't want that thing!" He did really well and was very happy that Allie got to ride home in the car with him, too. He fell asleep on the way, and then Allie carried him upstairs and he fell back asleep for another hour or so.

Today he's on Motrin and his fever is down (for now at least). When he woke up, fever broken, he said, "MOM! I all better! I not hot anymore!" We'll hope it lasts. We are supposed to call Dr. Wells here shortly to let him know how Spencer is doing. He said that he probably wouldn't stick Spence in Green Unit, but he wanted to know if he was still sickly. Sophie is not feeling well today, either, so it's looking like a quiet day at home for the Joneses. Mike is out on a Harry Potter book hunt. He already went to HEB (our grocery store) this morning and they were out of the latest and greatest edition that came out today. So, now he's on his way over to Barnes and Noble in hopes of better luck.

Thanks for stopping by. We're praying that Spencer and Sophie get better soon and that Spencer doesn't have to go to the Green Unit. He really hates that place. He LOVES the fishy room (clinic) but he HATES the inpatient side of things. I don't blame him.

Shauna

Thursday, July 14, 2005 10:36 PM CDT

We went on safari today. Joy and I took our kids down to the "African Safari--Texas Style" Natural Bridges Wildlife Ranch. We bought food at the entrance, and the kids got to feed the animals through the car windows. We saw rhinos and ostriches and emus and deer and antelope and bison and longhorns and rams and all kinds of fun animal life. It was a fun-filled day.

Yesterday, Annie said, "Mom, don't you and Dad need to go on a date so that Allie can come babysit, or something!" Allie just recently returned from a college hunting trip, and the kids are anxiously looking forward to a visit from her tomorrow. I can't even tell Spencer she's coming until 2 minutes before she arrives, or he can't stand the anticipation of it all and falls apart wanting his Allie. We are sure going to miss her something fierce when we move.

Speaking of the move, we are going the weekend of August 6th. We are hoping to do an open house before we go so that we can see people one last time before we're off. I'll put all the details up here, so that anyone who wants to come cry with us about leaving Texas can do so. I saw a cute bumper sticker today that said, "Life's too short to not live it as a Texan." Ahh, Texas pride! Texas has been really good to us, and we will truly miss the Lone Star State. The people that we have met here are incredible, and we will leave part of our hearts in Texas.

I have to get to bed. I'm worn out from all of the safari adventures of the day. Thanks for stopping by.

Shauna

Tuesday, July 12, 2005 8:53 AM CDT

Just a quick update. Our house is on the market. It's good to have that step finally behind us. Mike and I went on a date last night, which was really nice. The kids are enjoying their summer, and we are gearing up for our move. Life is hectic, as usual. I feel like I'm constantly in a state of exhaustion these days, I think it's all the stress of everything. I don't handle change well, even when it's bound to be a good change. I grew up in the same house, in the same little town that never changes. I never wanted to leave, but I had to, to go to college, and life has been one huge change after another ever since. The experiences that we've had through all of the changes have been amazing, and I'm grateful for all of the things that we've learned through them all, but the small town girl in me really hopes that one day we'll get to settle down and have a little bit of a boring life one of these days. :0) I somehow don't think it's in our cards.

Thanks for stopping by. Thanks for your thoughts and prayers. We are grateful for them.

Shauna

Friday, July 8, 2005 9:17 AM CDT

Yea for the weekend! Life is going well for the Joneses. Mike's ankle is healing, very slowly but surely. Our house is in market-ready condition, and we met with the realtor yesterday to discuss market values (pretty depressing). Annie is going with some friends to see "Madagascar" in the theater today, and she's very excited. Mike is going to a movie tonight (War of the Worlds) with Joy's husband Steve, since neither of their wives have any desire to go see it with them. :0) It's still hotter than hot here, and the kids are getting in at least some water time just about every day. Spencer is going through Allie-withdrawals, because she's on a college hunting trip this week. Sophie is busy learning all kinds of new pouty faces (it's pretty amusing). And life is still up in the air about Mike's job and our future. But, we're looking forward to a little rest and relaxation this weekend and a chance to not think about everything for a few days.

Thanks for stopping by. Have a fun weekend!

Shauna

Tuesday, July 5, 2005 10:21 PM CDT

(see new pictures)

Our fish, Dori, died on Sunday. Annie took it really hard. She cried and cried, "But, Dori was part of our family!" We had a little funeral in the back yard. We sang the fishy song ("Down by the meadow in the little fishy pool...") Annie decorated a matchbox, and we put tissue in it for Dori's casket. It was a sad day. Annie kept asking why Dori died. Mike said that sometimes fish just get sick. Annie said, "Do you think that Dori had cancer and that's why she died?" We told her that we didn't think that Dori had cancer. She has broken into tears randomly for the past few days, and she visits Dori's grave in the backyard several times a day. It's our first pet death--very sad.

Monday morning, Mike went to play basketball with some friends at the church and came home with a nasty injury. He got a really great stuff on a tall guy, but came down wrong on his ankle and wrist. He went to the doctor today because we thought it might be broken. His ankle and foot are totally swollen and black and blue. Good news--no break, but a VERY severe sprain. He's bandaged and in an air cast and moving very slowly around the house. Poor guy.

Spencer got another haircut on the 4th of July. His hair was still kind of wild on top, so I gave him a pretty good trim. I'll post pictures. He was very good about sitting still. I sat him up on the bathroom counter and gave him a water bottle, and he sat and sprayed the mirror while I cut his hair. The trick worked and he was a very good customer.

Joy and her boys and the kids and I went swimming today. It was fun to get out of the house. It's been so hot lately that I haven't felt very motivated to get out and about, but it was really fun and the cold water felt great. Spencer is getting braver and braver in the water. He had a good time splashing and kicking. He was devastated when it was time to go home. I think he's trying to make up for last summer when he didn't get to do any swimming at all for fear of germs. He loves his swimming suit--it has lizards all over it, and he's very proud of it.

Tomorrow, Joy is taking Daniel to an orthopedist. His arm is still hurting and splinted. Hopefully, they can find out exactly what is wrong. Poor kid.

I heard word on Anna, the little girl with rhabdo in my hometown in Idaho. She finished her first 12 weeks of chemo and had scans. The tumor has shrunk, but is still inoperable. They will do 6 more weeks of chemo and then hopefully be able to remove the tumor. Please keep her family in your prayers. They would certainly appreciate it, I'm sure.

I need to get to bed. Thanks for stopping by.

Shauna

Saturday, July 2, 2005 12:59 AM CDT

Happy Fourth of July Weekend! I told Annie this morning that Monday was the Fourth of July. "Do you know what the Fourth of July is, Annie?" I asked. "What?" she replied. "It's our country's birthday!" I said. She looked up, "You mean, it's Texas's birthday?" Mike was in the room and, chuckling, murmured, "Spoken like a true Texan."

Annie is such a vocabulary girl. She is always trying out new lingo, even when she has no idea what it really means. She comes really close, but is just a little off sometimes. The other day when Allie was here, Annie told her that the strawberry plant was "flourishing." Allie was pretty impressed with her vocabulary. Annie continued, "And once it's flourished, we can pick the strawberries and eat them." Here's another cute one. We got word this morning that Daniel, Joy's youngest, hurt his arm while they were camping. The doctor thinks it may be a nursemaid's elbow, which happened to Annie when she was just about Daniel's age. I told her about it, and she said, in dismay, "That's just awful! I won't want to memorize THIS again!" She's not afraid to experiement with words, which makes for some really entertaining, and sometimes confusing, conversations. She's a keeper!

We've been doing home repair projects like crazy around here. I think we are finally caught up on everything and ready to list the house. It's scary to me, which is why we haven't done it yet, but next week's the week, I think. Wish us luck.

Allie's coming to play tomorrow, and Monday we'll probably go to the Round Rock 4th of July parade. Last year when we went, Spencer was a little bald, sickly kid. It's amazing what a year can change. His appetite is finally picking up and he's growing. He just walked into the room, holding a piece of paper, and singing at the top of his lungs, "I have a PAPER!" Then, he smiled at me and said, "I just love that song!" My kids think life is a musical. It's pretty fun.

Well, I'd better get going. Have a happy and safe Fourth of July weekend! Thanks for stopping by.

Shauna

Wednesday, June 29, 2005 9:01 PM CDT

OKAY, OKAY! NEW PICTURES HAVE ARRIVED!

Sorry I'm so slow at updating. Sunday, Allie came to play with the kids, and they had lots of fun, of course. Monday, Spencer's appointment went pretty well. We should know by now that afternoon appointments are not the best time for Spencer's people skills. He was extremely tired, and had a melt down when Dr. Sharp tried to examine him. Jennifer worked her magic charms on him, though, and accessing went amazingly smoothly considering that it immediately followed Dr. Sharp's exam. Spencer's counts were great, and Allie was there volunteering, so Spencer had a fun time playing dinosaurs with her. He threw the usual tantrum when it was time to leave. I swear, he is the only kid that I know of who screams to LEAVE the doctor's office. He loves it there.

We talked to Dr. Sharp and Jennifer about moving. Leaving their care is probably my biggest anxiety about the move. Jennifer was wonderful and gave us good advice and walked us through the process. She also offered to take any phone call questions that we might have...ever. She is wonderful, and I'll cry when we actually leave her. We are going to leave Spencer's port in, so that he has some sense of continuity when we go to the next doctor's office. At least ONE thing will be the same, and we won't have to throw in the trauma of being accessed through a vein in the arm on top of the trauma of no Jennifer and no Dr. Sharp and no Allie and no fishy room. (sigh) I can already guarantee that things will be rough for a while, and probably not a short while, either.

We talked to Dr. Sharp about doing another set of scans in August, and he quickly agreed. He is wonderful about letting us be a part of Spencer's care plan. We are thankful for his willingness to include our opinion and concerns in all of Spencer's health care decisions. So, we'll set up another set of scans for mid-August, and then he'll have a set in November, and then scans will move to every six months after that. I'll let you know when we have an official scan date.

So, Tuesday, Joy took all of our kids, Mike had a day off from work, and we spent the day alone together. It was nice. We had a pact that we wouldn't talk about the stresses of life--jobs, moving, selling the house, finding new doctors, leaving our friends, etc. We went to lunch and took a nice long uninterrupted nap afterwards. Then we attacked a home repair project that was long over due. Months ago, Annie accidentally shattered one of the panes in our double paned back door window. It has been on our list of things to do ever since. So, we did it while we were kids free. It was a huge undertaking, because we had to take the molding off outside and in, and replace the whole door jamb. Mike is just finishing up the final touches on it this evening. It was fun to work together and much easier without our three little helpers giving us a hand.

Speaking of our three little helpers, they are not really going to sleep like they are supposed to be doing, judging from the loud sounds coming from their bedroom. I'd better go. Thanks for checking on us.

Shauna

Saturday, June 25, 2005 9:42 AM CDT

Thanks to everyone for your kind words and condolences. I really appreciate your thoughtfullness. We've been keeping busy the past few days, which has been a good thing for me, I think. We went swimming at a friend's neighborhood pool on Thursday, and went swimming again in another friend's backyard pool on Friday. The kids had a blast, and it kept us cooled off and having fun. I had Joy's boys for the past few days during the day, because Joy was attending the church Girl's Camp as a leader. It was great for the kids to get to spend so much time together and have fun. I did get a few funny looks at the neighborhood pool on Thursday as I gathered up 5 small kids to take home. I think people thought they were all mine. :0) That's okay, I'll claim all of them.

Last night, Mike and I were going to go on a date. Candlelighters, the cancer support group, had free babysitting at the Caswell House downtown. Spencer and Sophie have coughs, but we thought they were on the mend. We even loaded everyone up and started downtown, but Spencer kept hacking, and we couldn't bring ourselves to leave two coughing kids with a group of cancer kids, some of whom may still be on treatment. So, we turned around and had a little camp-out at home. We pitched the kids' tent in the family room and they watched movies from inside the tent. We ordered pizza and had a fun evening as a family. I haven't heard coughing today, so I think we'll be able to go to the cancer family get together this afternoon at a park in South Austin. Hopefully, it's not too miserably hot. Should be lots of fun.

We are probably going to be putting our house on the market next week. It's scary, but we want to give ourselves enough time to hopefully sell it before we actually leave. Right now, the plan is to go in mid-August, but it will depend on whether or not Mike gets a job before then. The job that we thought was in Idaho is now in Portland, so that's on the board as a possibility. It's all so up-in-the-air that I hate to even write about it. It could all change tomorrow. We're just going by faith that things will work out for the best and that we'll end up where we're supposed to be. I believe that the Lord puts us places at certain times for certain purposes. We were not expecting to ever end up in Texas again, but it has been a huge blessing and we are so glad for our time here. The medical care we've received here at critical times has been fantastic, and the people that we've met will be in our hearts forever. It will be exciting to see where we end up next and what we'll learn from our experiences there.

Thanks for checking in on us. Spencie has a check up on Monday, at 2:30. Allie will be there volunteering, so Spence will be in heaven. We need to talk to Dr. Sharp about moving and about whether we should remove Spencer's port-a-cath before we go. I'll let you all know how it went when it's over.

Shauna

Wednesday, June 22, 2005 7:40 AM CDT

I had a really hard evening yesterday. I learned of the death of one of my dear college friends last night. Rachel (Stubbs) Mcteer was my neighbor my senior year at BYU and was one of my favorite people. She was killed by a semi truck, driving back to her home Saturday night. She has a husband of 5 years and two daughters, one 3 years old and one 3 months old. She was such a joy to be around, and I enjoyed her friendship so much. She was the cousin of two of my roommates, so she spent a lot of time at our apartment, and we all loved her. What a tragedy! I sobbed for hours. I know that I shouldn't be sad for Rachel, but my heart aches for her husband and for those little girls that will never get to know what an amazing and wonderful person their mother was. Rachel was 29.

I also found out last night that one of my roommates, Jennifer (Whitney) Goodman, has been diagnosed with breast cancer. Jeni is Rachel's cousin, and was my roommate for 2 years and is very dear to my heart. She is also a young mother, and I'm so saddened by the news. Rachel was apparently heading home from helping Jeni when she was killed. I wish I could be there in person at the funeral tomorrow. I wish that I could give Jeni a big hug. I spent hours on the phone last night with two of my other roommates talking and crying about the whole thing. We were all very close, and it's hard to be so far apart now. I kept thinking about what I wrote in my last entry about "happily ever after." It's never felt more true than today. Please pray for Jeni, and for Rachel's family. I know that they would appreciate all of the prayers they can get. I'm so sad.

Today should be a pretty quiet day. I am worn out from last night's events, followed by a very restless night by both Spencer and Sophie. Hopefully, we can all sneak naps today. Thanks for stopping by.

Shauna

Monday, June 20, 2005 8:45 PM CDT

Well, we finally did it. Spencer got his first, all-over, post-chemo haircut. He looks like quite the little Mike now. I'll try to get some pictures of him taken and posted tomorrow. Very cute.

Father's Day was a hit. I think Mike had a really good day, except for the fact that he had a very bad sunburn from boating the day before (so much for the sunblock). All in all though, the day was nice.

Today, Mike had an allergic reaction to his sunburn, mixed with the burn gel that he put on it (lidocaine). It was not a happy sight. He had intense (and that's putting it mildly) itching all over his back and shoulders and neck. He finally ended up taking a big dose of benedryl and I slathered cortisone all over his back, and he finally got a little relief. Poor guy was very miserable for a while there.

I'm packing boxes in my spare time. We are both getting very frustrated with Sear's inability/unwillingness to act and make Mike an offer so that we can refuse it and move on. He is a CSC employee, working on the Sears account, but Sears has first dibs on making any offers, and he can't look for anything else within CSC until he refuses any offers from Sears. It's a ridiculous situation, if you ask me, but so it is. So, we're just waiting and getting more and more frustrated by the day. We're praying that Sears acts soon so that we can get on with life.

Today I took Spencer and Sophie over to Garrett's family's house to drop off a cd of pictures. Colleen waved as were were driving off. Spencer said, "Who's that mommy there?" I said, "That's Garrett's mommy. Do you remember Garrett?" He said, "Yes... Know what, Mom? Garrett died." I paused. "Yes, he died," I responded. There were just a few seconds of silence, followed by, "Spencer's going to die, Mom?" I said, "No, honey, Spencer's all better, remember?" He thought about it a minute and said, "Spencer's not going to die. I got hurt, but now I'm all better, huh, Mom." He sat there a few more seconds, and then added, "But, Garrett died. His mommy's sad, huh, Mom." I tried not to let my voice waver as I said, "Yes, Spencer, his mommy is very sad." It made me hurt to have that conversation with my three-year-old. It's just not right.

Today is the one year anniversary of Ian's death. I found Ian soon after Spencer was diagnosed and immediately bonded to that sweet little boy who reminded me so much of my Spencer. He was doing well at the time and far enough ahead of Spencer in treatment, that I thought that it would be great to follow him and see what to expect. I cannot tell you how heart broken I was by his death--a little boy I'd never met in person, but whom I loved just the same. What a tragedy! I haven't been touched by another caringbridge child in quite the same way as I was by Ian Davideit. His family is dear to my heart, and I'm sure today was an extremely difficult day for all of them. Please keep them in your prayers.

It doesn't seem to make much sense, does it? I keep reminding myself that the promise of "happily ever after" comes in the next life--it's not a guarantee in this one. But, the Lord does strengthen and lift us along our journeys, and I'm so grateful for that. I like the quote by Jenkin Lloyd Jones that says,

"Anyone who imagines that bliss is normal in life is going to waste a lot of time running around shouting that he's been robbed... Life is like an old-time rail journey - delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally with beautiful vistas and thrilling bursts of speed. The trick is to thank God for letting you have the ride."

We are grateful for our blessings. Thank you for stopping by.

Shauna

Saturday, June 18, 2005 2:56 PM CDT

Mike and I went on a date last night. We doubled with Joy and Steve and went to dinner at The Old San Francisco Steak House, followed by "Batman Begins" at the theater. It was a really fun night. The restaurant was great--it's like an old fashioned saloon, almost. The waiters and waitresses wear period costumes, they have a couple of pianists that play a steady stream of old time favorites and ragtime, and they even have a red velvet swing that a girl swings on when she's not singing "O Danny Boy" or "New York, New York," or other fun songs. It was really good food, too. A very fun place. Joy and Steve have told us how good it was since we moved in--I'm glad that we finally went. Fun evening.

Today, Mike and Annie are out boating with Joy's family on the lake. Annie was SO excited to be going boating. She was wearing her swimsuit hours before it was actually time to leave. I'm sure that they will have a good time, and get lots of good Texas sun. Thank goodness for sunblock!

Allie came this morning, and I announced her arrival a little prematurely, I'm afraid. I said, "Allie's coming this morning, guys!" Chaos ensued, as the kids ran around the house screaming, "ALLIE'S COMING! ALLIE'S COMING! YEA, ALLIE'S COMING!" You'd think they liked the girl, or something. She wore Spencer and Sophie out, playing and swimming in our little backyard pool. Well, actually, I don't think Allie really INTENDED to swim, because she was wearing jeans and a t-shirt. I'm pretty sure the plan was to sit on the folding chair in the pool, with her pants rolled up, and watch the little kids swim. However, Spencer and Sophie had different plans in mind. Allie ended up soaked, but they all had a good time and Spencer was very sad when she finally had to leave. He refuses to say good-bye to Allie every time she goes. He just won't do it. Today, after Allie left, we were sitting eating lunch, and I said, "Spence, did it make you sad when Allie left?" He nodded. I continued, "Why won't you say good-bye to Allie when she leaves?" He sat there for a minute, and then said, "I don't want to say it, Mom. I don't like to say good-bye. I don't like when Allie leaves, and I don't like to say good-bye." Fair enough.

Tomorrow is Father's Day, and we plan on completely spoiling the dad of this house, as he rightly deserves. It should be a fun day. I can't help but feel melancholy as I think of it, though, because it was last year on Father's Day that our little friend Ian passed away. What an incredibly hard day for his dad! If you can, please stop by their page and let them know that they are thought of. I can't imagine their sadness.

I talked with Dr. Mark Witten on the phone yesterday. He is a research scientist in Arizona who has been checking out environmental factors for the leukemia/rhabdomyosarcoma cluster towns throughout the nation. He will be coming to Round Rock near the end of July, beginning of August, to test our area for tungsten. I'm eager to find out what the tungsten levels are here.

And, finally, it looks like we are leaving Texas soon. I have very mixed emotions about the whole thing. Mike's boss gave us permission to relocate while his work with Sears winds down, just telecommuting every day. He is interviewing in Utah and Idaho, and has a couple of prospects that we would love to have pan out. We will be thrilled to live back near our families. We have really struggled being so far from grandparents, cousins, brothers and sisters, but we both feel like we have made a new family here, and it is so sad to be leaving. The thought of leaving Joy and her family, and Allie and her family, and Jennifer, and Dr. Sharp, along with all of the many good friends we've made here is really heart breaking. We just keep praying that everything will work out the way it should, and we know that we just have to trust that the Lord knows what's best for us, and He will guide us, just as He has always done in the past. It will be a bittersweet move, that's for sure.

I need to run. We appreciate everyone's continued support of Spencer and our family. He is doing so well these days. His talking is just improving by the day. His energy is good. His hair is in serious need of a trim. His lips and cheeks are red, and you can see that he is truly enjoying life. I'm so grateful for his miracle. He is such a blessing to our family, and we all are so thankful for his good health. Thanks for stopping by.

Shauna

Wednesday, June 15, 2005 9:49 PM CDT

NEW PICTURES!

Okay, a few quick, funny kid stories. I guess you can learn a lot about how you discipline your kids from your kids. Today, Spencer was upstairs playing. Sophie was downstairs playing and wanted Spencer to come down and play with her, which he wasn't so keen on doing just then. I heard her hollering up the stairs at her brother, in her best 2-year-old-mom voice, "Spencie? SPENCIE! Come down, NOW, Spencie! Wanna timeout, Spence? I count, Spence. ONE...TWO...ONE...TWO...SIX...SPENCIE! You wanna spank bum, Spence? SPENCE..." A few seconds of silence, followed by..."MOM! HELP ME!" It made me laugh.

A little while later, Annie was crying about something--I don't remember why. Spencer came in to me and said, "Mom? What's wrong with Annie? She's just crabby and crabby, Mom." (big sigh) "I just don't know about it, Mom. I think she needs a nap. I go tell her, Mom." I caught him about half way out the door, ready to send his sister to bed. I guess we just have a house full of grown ups.

We got new carpet today. We got a good price on it, and the house looks so much nicer; I'm glad that we did it. The kids played outside in the little pool most of the afternoon (Annie played ALL of the afternoon). That pool is going to save us this summer, I think. It is SOOOOO hot already, I am dreading August. It's supposed to be a record setting summer for heat this year. I'm so thankful for A/C! I can't imagine how those pioneers survived!

Well, I'd better get going. Thanks for checking on us.

Shauna

p.s.--one other quick Spencer story. He was talking on the toy cell phone this afternoon, having a "conversation" with Allie. "Hello? Allie? Oh, hi, Allie. Yes, Sophie’s just being crabby. I don’t know why. I think she wants you. Well, I just love you, Allie. I love you. Bye" Allie has a special place in Spencer's heart, that's for sure.

Tuesday, June 14, 2005 8:41 AM CDT

Mike had a good birthday and we had a very fun weekend. We ended up going to Volente Beach on Saturday as a family. It's a water park/beach on Lake Travis, which is a lake near here. Spencer and Sophie discovered the joy of burying their feet in the sand and then popping them out with big bursts of laughter. Mike had swimming lessons with Annie, which she thought was very cool. There were little fish all over that kept nibbling Mike. One nibbled on Sophie's finger, much to her shock, and that about did her in for playing in the water. After that, she stuck to the sand castle building. Spencer made a lake and a river in the sand, and then made me be his water girl. I filled countless numbers of water bottles in the lake, and then he'd dump them on the sand and watch them run down his river channel. Hours of fun, I'm telling you. Hours.

After the beach, we came home and had cake and ice cream, cleaned up the sand that we were covered in, and then dropped the kids off at Joy's house for the rest of the evening. Mike and I had a movie/dinner date. We watched Mr. and Mrs. Smith, and then went to The Cheesecake Factory and had a really nice dinner. It was a good day, and I think Mike enjoyed himself thoroughly.

Spencer has been having bad dreams a lot lately. It's always something different, but it's been waking him up at least once a night for the past week or so. I don't know what to make of them. Hopefully, they will pass soon.

His hair is getting longer and curlier by the day. I keep thinking that I should give him a trim (Mike suggested a buzz--the suggestion was accompanied by a dirty look from me), but I don't have the heart yet to cut off the hair that took so long in the coming. One of these days...

We went to a birthday party yesterday for one of Spencer's friends from church. It was at Pump It Up, and the kids had a wonderful time playing and jumping and sliding. Spencer wanted to go down the big inflatable slide, but was too timid to go it alone, so I ended up carrying him up and sliding down with him over and over again. It was quite the workout for me, and it was tons of fun for Spence. He chose some of his dinosaurs to give as a birthday present. I was afraid we'd get there and he'd change his mind, but he was very good about the whole thing, and was excited to have given a birthday present to his friend.

Well, I'd better get going. I'm doing some painting today, and the kids are playing with play dough this morning. Thanks for stopping by. Mike's job is still up in the air, but, we are feeling more and more peace about everything. We'll let you know what happens as it does.

Shauna

Saturday, June 11, 2005 9:45 AM CDT

Happy 30th Birthday to MIKE!

Thursday, June 9, 2005 7:54 AM CDT

Life is still good. We are having a pretty quiet week as far as appointments and such. We fed the missionaries on Tuesday and have a KidStrong Meeting today. It is at Pump It Up, which is a place with a bunch of inflatable jumping toys, so the kids should have a ball. Saturday is Mike's birthday, and as is our usual style, we are still trying to firm up details on what we are doing for it. He's turning 30, so it's a big deal, but we are trying to be frugal, because our employment situation is up in the air. So, instead of telling you all what we are planning on doing, and then re-writing what we actually did when all is said and done, I'll just fill you in on Monday when we've actually done whatever it is we end up doing. :0)

I've been fixing up the house as much as I can to prepare to put it on the market if we need to, and it's wearing me out! The kids have been playing in the new swimming pool every day this week, and actually are starting to have a little color in their faces. It's kind of a nice change from last summer's pasty-white hospital look, and they are having so much fun. Unfortunately, they are all allergic to our "mild as water, PABA-free" sunscreen and break out in rashes every time I use it on them. If anyone has any suggestions on what to use, please send them our way.

Well, I need to get the kids up and ready for the meeting, so I'd better get going. Thanks for stopping by.

Shauna

Sunday, June 5, 2005 9:39 PM CDT

Happy Birthday, Annie!

Annie turned 6 today. A very big day. She had a really good day. Mike made her a waffle breakfast, and she chose pizza for dinner. Joy and her family joined us for dinner, and the kids had a great time playing and running around. Allie made a guest appearance, too, bringing Annie a potted flower and "farmer gloves" (gardening gloves) for her to practice being a farmer. Annie was on Cloud 9 all day. She got lots of phone calls from family. She told me, "I'm going to be very busy now that I'm 6, Mom. I'll have to do homework a lot, and get my own food, and take care of the little kids more, and do more chores around the house..." I thought she turned 6, not 16, but I guess I was mistaken. :0) She is so grown up these days! We gave the kids a little swimming pool for the back patio today, and they had fun splashing in the water and staying cool in the heat. She said, "This is my best birthday EVER!" So, I think it was a hit.

Her dance recital last night also went off without a hitch. She looked so cute and did a really good job. It was fun to watch. Spencer and Sophie were enthralled by all of the dance numbers. Every time another group would come out to perform, Spencer would say, "It's real, real cool, Mom!" and Sophie would chirp in, "I YIKE IT, MOM! I YIKE IT!" We stopped afterwards and picked up some flowers for Annie, which she loved. It was a really nice family activity.

There was a Cancer Survivors Day Celebration today thrown by Austin Cancer Centers that we were invited to. They had music and face painting and food and games for the kids. It sounded like a fun time, but we decided against it. When I asked Annie if she wanted to go, she said, very carefully, "Well, it WOULD be fun to go, and if you want to we can. But, that would be a party for Spencer. And I kind of want a party for me on my birthday." Mike and I agreed that she has been put on the back burner too often because of cancer and she certainly had the right to have her own special day. She told me yesterday as I was curling her hair for the recital, "But, it was really scary that day that Spencer got cancer. Remember, I woke up and Spence was throwing up and you said we had to take him to the hospital. I had to go to Kenneth's house, but I really wanted to come with you, because he's my brother and I wanted to be there with him and help him, and I was really sad and scared. I really don't want his cancer to come back, cause that was the most dreadful thing in my whole life." It's pretty sad when "the most dreadful" thing in a 4 year old's life is truly a dreadful thing.

Thanks for stopping by. I'm beat. It's been a really full, fun weekend and I need some sleep. We appreciate your support and prayers.

Shauna

Thursday, June 2, 2005 11:22 AM CDT

I keep sitting down to update, and I keep getting sidetracked. I'll try to be succint, and we'll see if this time takes. Life is busy, as usual. Mike is job hunting, I'm fighting old insurance claims, and Annie is getting very excited to turn 6 this Sunday. Spencer's hair is growing by the day, and Sophie has hit the terrible twos full force.

Everyone seems to be fully recovered from our bouts of illness, and the days are really heating up around here, so running through the sprinklers is becoming an almost daily event. Yesterday, the kids had lots of friends over to play and had a great time. We had 10 children 5 or under for a while. It was fun.

Tomorrow is Annie's dress rehearsal for her ballet recital, and Saturday is her performance. It's at the Performing Arts Center right next to McNeil High School at 7:00pm on Saturday if any of you can, or would like to, attend. Annie's group is the second to perform, so it should be early on in the evening. I've never been there before, and knowing my sense of direction, I plan to take a trial run over there today to make sure that I can really find the place. Exciting stuff. The dance festivities, coupled with her birthday on Sunday, have Annie in a constant state of elation these days.

Alright, I'd better go before I get pulled away and never end up finishing this. Thanks for stopping by.

Shauna

p.s.--I recently found another little rhabdomyosarcoma patient from my hometown in Idaho. She is newly diagnosed with an almost identical diagnosis as Spencer--Stage III rhabdomyosarcoma, abdominal tumor, 2 years old. Her parents also just had a new baby and are overwhelmed and stressed out. They don't have a caringbridge page, but please pray for Anna and her family as they enter this scary and unknown new life as a cancer family.

Sunday, May 29, 2005 3:14 PM CDT

Mike's meeting on Friday went about as expected. Sears and CSC are definitely parting ways. Sears will have first dibs on making Mike any kind of offer they would like, and then if Mike refuses the offer, he can look for a new job within CSC. He has spent the last few days job hunting online. They didn't give us much by way of a timeline, but hopefully in the next 30 days he'll have word from Sears on an offer if they are going to make one, and we can go from there.

I had a great talk with a woman in Tucson on Friday about cluster groups of leukemia/rhabdo. There are four other towns that we know of, besides Round Rock, that have unusually high rates of leukemia, coupled with unusually high rates of rhabdomyosarcoma. There is a Dr. Witten who has been doing research to try to find an environmental link, and although he's in Oregon doing research this weekend, he'll be back in Arizona after Tuesday of next week and would like to talk with us. Hopefully, he'll have funding to come out and run some tests in Round Rock. I was happy to have the phone call, but it didn't leave me very hopeful about finding anything conclusive. The CDC has done over 110 cluster investigations and has never once come up with anything that they think is strong enough evidence to do anything about. I read some interesting research on tungsten and rhabdo. If you're interested, you can read the abstract here. I would be very interested to know what our tungsten levels are here. Anyway, I'll keep you all updated on our search for the truth.

Our baby bunnies have left the nest, to Annie's considerable sorrow. They were sure cute--I think I got the last peak at them last night. Hopefully, they'll come back and visit us occasionally. Annie and Mike had carrots today from our garden. They thought they were pretty yummy. The plants aren't flourishing as much as we'd like, especially the squash, but we'll get some yield, and it's good practice for Annie, our farmer-in-training.

We had a fun evening last night. We went as a family to have dinner at IHOP. The kids thought it was very cool, since we have not gone out all together very often in the past. But, the kids are growing up, and they did great and were very well behaved. Then we went to Home Deopot and looked at carpet and other fun stuff, like toilet seat covers. :0) It was a fun family adventure. Then, the kids got to have a slumber party on the family room floor and watch a movie. They were cute, all cuddled together on the floor, watching the "Wild Thornberries." Good family fun.

Allie came to play after church. She's still here, actually, but the kids are dropping off one by one. Sophie fell asleep just a few minutes before Allie arrived, and Spencer just lost consciousness on the floor watching "Rikki Tikki Tavvy" with Annie and Allie. So, now Annie and Allie are having some good one-on-one time. Spencer knew that Allie was coming today, so he woke up this morning, saying, "I think I'll stay home from church today and wait for Allie." Uh huh. They sure love their Allie.

Well, I'm sewing a quilt for Annie and Sophie, so I'd better get back to working on it. Thanks for stopping by. We appreciate your prayers and encouragement. Have a good Sunday.

Shauna

Thursday, May 26, 2005 7:22 PM CDT

I'm in the middle of a little freak out this evening. I don't know if this is the best time to post, but here I am any way because I'm not quite sure what to do with myself at the moment. The Department of Health called yesterday to tell me that they researched their records and between 1995 and 2002, there are no recorded cases of rhabdomyosarcoma in our zip code. Since the beginning of 2003, there have been FIVE that we know of, all within 5 miles of each other. For those of you who don't know, rhabdo is very rare, affecting about 5 in one million children per year. There are about 40,000 people (PEOPLE, not children) in our zip code, and I'm sure quite a few less than that in the focused area in which we cancer families live. In addition to that, I was talking to one of the oncology nurses last night who said that there has been a big spike in leukemia patients in Round Rock in the last couple of years as well. She said that there were 8 patients diagnosed within 6 months in our area. Mike and I are really disconcerted by the whole thing. We strongly suspect environmental causes, but proving it seems a very daunting, not to mention time consuming, task. It's all a little overwhelming and stressful. I'm trying not to think about the possibility that we may be experiencing continued exposure to whatever is causing the spike, as well.

In addition to that, Mike's job security appears to be a little uncertain at present. The contract that his company has with Sears is being terminated and there is an all-hands meeting tomorrow--I guess we'll see what that brings.

I took Sophie to the doctor (again) today, and she has infections in both ears and her left eye, which is swollen half-way shut. She is now on antibiotics and, hopefully, she'll be feeling much more perky in the next day or two.

I have to keep reminding myself to have faith. The Lord is in charge. He has guided us in the past, and I know that He will continue to do so in the future. I just have to keep reminding myself to take deep breaths and take each day as it comes. One of my favorite hymns says:

Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev’ry change he faithful will remain.
Be still, my soul: Thy best, thy heav’nly Friend
Thru thorny ways leads to a joyful end.

Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

Text: Katharina von Schlegel, b. 1697; trans. by Jane Borthwick, 1813–1897

Thanks for stopping by. We appreciated all of the congratulations and kind comments in the guestbook in regards to Spencer's scans. We are grateful for your continued support and encouragement. Thank you!

Shauna

Monday, May 23, 2005 8:23 PM CDT

Scans and results all in the same day. That's right--results! That must be some kind of record! I suppose you'd all like to hear the results before you hear the narrative of the day, even though it's not very chronological. Oh well, I'll humor you all. The scans were good over all. There's a spot in his lungs that has grown a little since last time, but they still are considering it a pneumatocele, which is a little pocket of air and, as far as I can ascertain, not something to freak out about, but something to watch. Dr. Sharp is sending the scans over to Dr. Smith, Spence's surgeon, for a second opinion. The official verbage goes something like this:

"Review of bone windows demonstrates a small pneumatocele or cyst within the medial right upper lobe slightly larger over the interval measuring 1.4 cm in greatest dimension currently. No evidence for pulmonary, nodular, or parenchymal infiltrates identified."

There's also a tiny low density lesion within the spleen that "couldn't be clearly identified because of patient motion" (read: Spencer was in hysterics through most of the scan). This has also been seen in previous scans and not anything new or spectacular. His heart size is normal. Both kidneys are functioning well and are normal. "No pelvic mass lesions or adenopathy is identified. The overall appearance of the pelvis is stable." So, we take that all as pretty good news, and we're counting them as clear scans! Happy day!

Now, for the story behind the good results. :0) We had to leave the house at 7:15--we arrived around 8:00 this morning. Allie met us at the hospital and spent the entire time being moral support for Spencer. He had a good time playing with her. Mike, the contrast fluid Nazi, did a great job getting all 24 ounces of contrast down Spencer through the normal force-a-syringe-in-Spencer's-mouth-every-3-seconds approach. Mike is a miracle worker when it comes to getting Spencer to drink the contrast. Spencer threw a huge fuss about the first syringe-full, and I had serious doubts about our abilities to get him to drink even one of the two big powerade bottles, but by the end, he was drinking syringe-fulls without even thinking about it.

Spencer did really well getting accessed, too. Dr. Sharp was in the room with us while Jennifer accessed Spencer, and he was really impressed with the amazing improvements Spencer has made. He didn't even cry once. He sat up by himself in the "big boy chair" and let Jennifer do everything she needed to without a fuss. I said, "Spence, you and Jennifer are a good team, huh?" He nodded and smiled.

The scans themselves were the worst part of the whole day for Spencer. He got really stressed out by the fact that we had to hold his arms up over his head. He was a little panicked, and was sobbing through the whole thing. They had to do two takes on one of the scans, and the over-all quality of the scans seems to have suffered, but he did his best, and I think they were good enough to see what we needed to see. Next time we might try sedation again so that we can get a really good picture, but we survived the day, and Spencer and Allie got some more good play time in afterwards in the fishy room before Jennifer came and deaccessed him. We got out of there around noon. We really appreciated Allie being there. It made the day soooo much more enjoyable for Spencie, and a lot easier on us as parents. Thanks, Allie!

So, we're pleased with the results of the day. It will be interesting to hear what Dr. Smith says about the pneumatocele, but we're really not worried about the whole thing. We're counting our blessings and grateful to have another set of scans behind us. Six months in remission and counting!

We love you, Spencer Jones!

Shauna

Saturday, May 21, 2005 9:14 AM CDT

Life is returning to normal. Mike went in on Thursday morning and got put on antibiotics for bronchitis. By yesterday afternoon, he was feeling much better. Sophie's congestion is almost gone, and we all seem to be getting back to our old selves. Thanks for all of your prayers and thoughts on our behalf.

Last night, to celebrate the return of good health and to escape the house after two weeks of sickness lock down, Mike and I went on a double date with Joy and Steve to see the new Star Wars movie. Allie came and watched the kids while we were gone. According to Annie's report this morning, they had the "best party ever." They ran through the sprinkler, then had a bath, ate ice cream, and watched Blue's Clues. Spencer was still fighting to stay awake when we got home, but the girls had given up the fight earlier. Spencer came and fell asleep on my lap while we chatted with Allie. The kids were all smiles this moring when I asked them about their fun night last night. Spencer's comment was, "I just LOVE Alie." It's so nice to be able to leave the kids and know that they are having fun and are well taken care of. Peace of mind for the parents, fun for the kids--Allie is wonderful.

This afternoon we are heading down to San Antonio to listen to President Gordon B. Hickley, the prophet and leader of our church, speak to us and to watch the Jubilee--it's a big dance/music extravaganza that the youth from all over the area have put together to celebrate the new temple in San Antonio. Should be lots of fun. I hope the kids last through the whole thing. Tomorrow is the dedication of the temple, which Mike and I will attend. So, big days ahead. Then Monday is Spencer's scans and Tuesday we have a meeting with all of the other rhabdo parents from Round Rock. There are 4 families and we all live within 7 miles of each other--pretty scary, eh? And hopefully we'll have some scan results by Tuesday as well.

Thanks for checking in on us. We appreciate your support.

Shauna

Tuesday, May 17, 2005 11:22 AM CDT

UPDATE (Thursday, May 19th, 7:00am):I took Spencer in to the oncology clinic on Tuesday and he is on antibiotics now. His fever and my fever are finally GONE! Mike is going into the doctor this morning. He thinks he might have strep--hopefully he can get on antibiotics today and we can finally be rid of the sicky monsters in our house. Sophie is hanging on to her congestion, and it's settling in her lungs. She has quite a cough, so we may end up taking her in one more time to check for a sinus infection and to make sure her lungs are okay. BUT, I think we are, for the most part, on the mend. We'll hope. It was funny, I was at the rec center this morning working out, and the news station had a little segment on "what's going around." They listed like 6 different things, and it was a comprehensive list of our family's ailments. How lucky are we to have EVERYTHING that's going around? I don't know how we do it, but I don't think anyone should be trying to keep up with the Joneses on this one. I think we're nearing the end, though, and we are SO excited!

So, now I have strep throat. And Spencer probably does, too. I just started on antibiotic and I have a call into Dr. Sharp's office to get Spencer on some, too. Mike has a sore throat, too, so he'll probably be in to see the doctor at some point today to have a strep test done. I wonder if we should have Sophie tested again. Where is all of this coming from? We've been quarantined in our house for the last 2 weeks! Annie has seemed to avoid the worst so far--I think it may be thanks to her tonsilectomy. Yesterday she ran a low grade fever and lounged around all day, but today she seems to be back to her old self. Oh, and she caught Mike's pink eye in one eye. I'm telling you what--I'm about ready to go back to our on-treatment way of life, where we never went out in public or did anything with other people, because we missed all of the bugs and crud that went around for the most part. Oh well, I guess that's life.

Joy was kind enough to take Annie over to Lamppost Pizza last night to pick up her soccer trophy. Annie's team had an end-of-the-season pizza party, but with Annie's fever yesterday, and between two sick parents, we had to skip the festivities. But, she did get to pick up her trophy, and she is thrilled, thrilled, thrilled about that. It's her first trophy ever, and she has been carrying it around with her everywhere she goes since she got it.

And, the most exciting news of the day is that we have a nest of baby bunnies in our back yard, nestled right up against our foundation in the back. Our neighborhood has a bunch of wild cottontails, and our yard seems to be one of their favorite hangout spots. Mike is convinced that they are just biding their time while our carrots grow nice and big, and then that will be the end of our garden. They are a bit of a nuisance, leaving rabbit droppings all over the yard, but the kids love them. Well, they love to chase them around.

So, yesterday, there were three just hanging out in our backyard, so Spencer, on a motrin/fever-free high, decided to go out and chase them around the yard. Usually, he gets a half-minute of chasing before they flee the yard, but yesterday they weren't budging. They would run around the yard, but wouldn't leave. So, Mike started video recording the chase, and in the middle of it, realized that there was a fourth rabbit curled up at our foundation, pulling fur out of her chest with her teeth and placing it underneath herself. And then, he noticed the hairless babies underneath her. And I'm SOOOO glad that we caught the mother in the act of hiding them, because I was going to try to mow the back yard today, and that would have been a tragedy. SOOOOOOOOOO, now we have an excuse to let the lawn go for another week or so while the babies grow up and move out. The kids think it is the coolest thing ever. They are all under strict instructions to leave the babies alone, but they can't resist going out several times a day just to stand on the patio and gaze over in the direction of the nest. Very fun.

Thanks for stopping by. We appreciate your thoughts and prayers.

Shauna

Sunday, May 15, 2005 12:09 AM CDT

*NEW PHOTOS ADDED*

Spencer and I (Shauna) are still running high fevers and feeling generally wiped out, and Mike is, as I type, at Urgent Care with an eye infection that has developed from his head cold. Annie is acting a little tired and irritable, but no fever so far, so we're praying that she gets to miss the whole ordeal. Sophie has a lingering cold/cough, too, that started during her fever week. She took a 5 hour nap yesterday, but she's acting generally perky and feeling pretty well over all, I'd say.

Joy ended up taking Annie to her ballet performance on Friday because I started running a fever, but Mike was able to go just in time for the performance, so at least one of us was there. We didn't make it to the cancer meeting Friday night, either, because of sickness. Everyone is feeling miserable, and patience is running short around the house. The kids are fighting and Mike and I are exhausted. There should be a law against both parents being really sick at the same time. We're hoping this all passes soon. Spencer is on Day 3 of fever, and I'm on day 2, so if we both have it as long as Sophie, we're not even half way done yet. (sigh)

So as not to end on a discouraging note, I have to share my favorite moment from Swan Lake the other night with Annie. Odette, the main character, was dancing and, in the dance, was turning back into a swan. Annie leaned over and said, "Mom, what's she doing?" I said, "She's going to turn into a swan." "How will she do that?" she asked. "Well," I whispered, "it's magic." She looked at the stage for a few seconds, then looked back at me with huge eyes and said very slowly, and a little too loudly, "ARE...YOU.........CRAZY?!?!" Then she turned back to watch the dance for about half a minute more, then she turned back to me with the same expression on her face and said, "Are you...really.........CRAZY?!?" I was laughing the rest of the night just thinking about it. It was hilarious. She was so caught up in the story and recited it back in minute detail to my mom on the phone yesterday. I'm glad that she had such a good time--it will be something she remembers for a long time to come.

Thanks for stopping by. Hope you all have a good Sunday.

Shauna

Friday, May 13, 2005 7:09 AM CDT

UPDATE (1:00pm): Spencer's fever is 104.5 and he's feeling pretty lousy. The clinic just called, though, and so far his blood culture is negative for infection, which is good news. We are just supposed to monitor him over the weekend, and call Dr. Shafer, who is the doctor on-call this weekend, if we have any concerns. We are pretty sure that it's the same thing that Sophie had, just a nasty virus that has to run its course. Still not very fun, though...

Well, I guess our good luck couldn't last forever. Spencer started running a 102.4 degree fever yesterday and Mike has a serious head cold. I called the oncologist's office and asked what we needed to do for Spencer and if we could give him motrin for the fever, since this is his first high off-treatment fever, and we ended up making an emergency trip to the fishy room for CBC and a blood culture. Because he still has his port-a-cath in, they have to check for infection with every fever over 101. Spencer was thrilled to be going, but not so happy to find out that Jennifer was on vacation and he couldn't go play in the fishy room because of his fever. He was confined to the examination room, but he really did very well. Anne, one of the other nurses, accessed Spencer and did a great job. I was a little concerned because, other than twice, Jennifer is the only person who has accessed Spence. He was very brave and didn't even fuss, except for commenting that the needle was "SHARP!" when she first accessed him.

I got back just in time to turn around and head to the ballet with Annie. We had a really fun time--she was thrilled to be there and kept trying to do the dance moves from our row along with the dancers up on stage. She followed the story really well and was very sad at the tragic ending. I'm so glad that we got to go with Wendy, it was a really nice night to get out.

This morning, I'm not feeling well. So, I may be coming down with Sophie's sickness, too. Hopefully not. I need to take Annie to a ballet performance today, and we have our cancer parent meeting tonight. If I can just stave it off for a few more days...

I need to go get ready for the day. Please keep us in your prayers that health will once again return to the Jones household soon. Thanks for stopping by.

Shauna

Wednesday, May 11, 2005 6:10 PM CDT

Life is good and busy. Annie had ballet today and has a performance on Friday morning. Tomorrow night, she and I have a date to go see "Swan Lake" at Bass Concert Hall. I think she'll really like it, I just hope she lasts through the whole thing. Colleen, Garrett's mom, had tickets that she ended up not being able to use, so she donated them to us. Very kind. Annie is really excited, and I am, too.

Friday night is a board meeting of cancer parents at the hospital. Colleen is heading it up and we are hoping to get funding through the Lance Armstrong Foundation to create activities and places that cancer kids can go to be kids. Should be fun.

Well, I have to run, just wanted to let you all know that we are well and busy. Scans are in a week and a half, on Monday, May 23rd. The stress hasn't set in yet, but I'm sure it's coming shortly. Thanks for stopping by.

Shauna

Sunday, May 8, 2005 5:55 PM CDT

(cue music) I THINK it's gonna be alright,
YES, the worst is over now,
The morning sun is shining
like a red rubber ball! (fade music)

Sophie's fever is gone! HAPPY Mother's Day! She started eating yesterday and is now running around the house with Spencer, pushing their baby doll strollers together. It is SO nice to see some life in our Sophie again. I'm sure she's lost weight, but she has color in her face again and is back to her old vim and vinegar self. It's good to see.

I have a quick Annie story that demonstrates what an independent little woman we have on our hands. We finished the last of last night's pizza for lunch today. Annie came asking for another piece, and Mike said, "The pizza's all gone." Annie said, "No, Dad, there was cheese AND olive pizza." I said, "But, there both gone." She headed in to the refrigerator to check things out for herself. Mike said, in exasperation, "Annie, you never believe anything your mom or dad tell you." Annie said, very slowly, thinking about each word in an effort not to offend, "Noooooooooooooooooooooo. I just...don't...think that it's...true." That's our Annie.

I have had a perfect Mother's Day today. Mike brought me breakfast in bed and single handedly got all of the kids ready for church while I had a long shower and took my time getting ready myself. They made a movie for me where each of the kids said what they like about their mom. It was darling. They also made me a cute card that had a bunch of pictures of the kids in it, and each of the kids had drawn/colored a page. I got a flower at church and had great meetings, and then came home and had a nap. Mike made me a really nice dinner of stuffed salmon and asparagus, and he and Annie have made a cake for me tonight to celebrate.

I'm lucky in that I have all of the moms in my life still with me--my mother and both of my grandmothers, and a wonderful mother-in-law. I had great fun talking to both of my grandmas and my mom. What blessings good mothers are! My mom was such a great example to me of charity and patience. I always knew beyond a shadow of a doubt that my mother loved me. She set the bar high, but I hope that I can be half the mother to my children that she was to me and my sisters. I've been thinking, too, of Ian's and Garrett's moms today, and all the other mothers that I know who are celebrating their first Mother's Day without one of their children. I can't begin to imagine what it feels like, but my thoughts and prayers are with you. I hope that you are finding more happiness than sorrow in the memories of your sweet children today.

Thank you for stopping by. We appreciate your guestbook entries and your prayers.

Shauna

Friday, May 6, 2005 9:18 PM CDT

NEW PHOTOS!

Annie went to the doctor, but not much was resolved. The pediatrician is stumped, but thinks it may just be weak muscles. Her advice was to exercise, but I am not sure I agree. She has been getting lots of exercise lately, and it seems to make the problem worse, not better. I think we may end up taking her in to see a specialist if the problem continues. She's walking pretty well today, so we'll see how the next few days go.

Sophie is still just as sick. The poor girl has red, puffy, watery eyes with dark circles under them, and now she is developing a lot of congestion to go along with the 104 degree fever. We are all wearing thin and hope that this passes soon. We talked to a nurse today who said that a virus can last a full week, so we are just waiting out the next few days and trying to make her as comfortable as possible. I'm afraid there won't be much of her left by the time this passes--she's so tiny as it is, and she hasn't eaten well in a week (with the exception of the mac and cheese feast yesterday). (sigh) If she is not better by Monday, we'll take her in again and have them do blood work or something. Very draining.

Well, I need to get some sleep. Thanks for checking on us.

Shauna

Thursday, May 5, 2005 9:03 PM CDT

What a great day! Today, Annie, Spencer, and I got to go with Joy and her family to attend the open house for the new San Antonio Temple for our church, the Church of Jesus Christ of Latter-day Saints. We regard temples as most sacred buildings. Once the temples are dedicated and in operation, only members in good standing with the church are able to go through, and small children don't go, so this was an incredible opportunity for the kids to see what a temple looks like and get a tour of what goes on inside of one. The open house has been going on for several weeks and is open to any one who wants to go--but it ends this weekend. We've been trying to find a day that we could all go down together as a family. Today was the day we had planned, but Sophie is still really sick, so Mike stayed home with her and I took the other two kids.

The temple really was beautiful. It's granite on the outside, and has just amazing stained glass windows with Texas scenes on them--trees and bluebonnets--beautiful. There's so much detail on the ceilings and the woodwork, everything is so elegant. You can see a picture of it and other temples here. Mike and I were married in a temple, and they are buildings of great peace and serenity. I love to be there and just sit and think and pray. I gain so much insight and perspective on life while I'm there. In the temple we receive instruction on the purpose of life, where we came from, and what happens after death. I love the peace that I feel there--it's like nowhere else I've been. Our closest temple so far has been in Houston (3 1/2 hours away), so to have one within an hour and a half's drive is so exciting to us.

Annie was very impressed with how beautiful everything was. She loved the flower beds and water fountains outside, and the woodwork and chandeliers inside. She kept saying, "Mom, it's GORGEOUS!" She was very well behaved and observant the whole time, and gave Mike a full report when we got home. Spencer, on the other hand, was a little overwhelmed by all of the people that were there and kept telling me it was time to go home. But, he was pretty well behaved, too, and he liked the statue of the angel on top of the temple and kept pointing it out to me over and over again. Oh, and he liked the fountains, too, but he mostly wanted to climb in them and was pretty put out when I didn't let him do it. They both enjoyed the cookies and punch in the refreshment tent afterwards, and the shuttle ride from the parking lot to the temple and back. All in all it was a really great day, and I'm so glad that we got to go.

Sophie is still so sick. Her fever is stubbornly returning to around 104 when she's not on fresh motrin or tylenol. She has hardly eaten anything for several days, and she just looks like she's been run through. When her fever is down, she's moaning and crying and fussy, and when her fever is up, she's too lethargic to do anything buy lie there quietly. I don't know what to do for her. It's been since Monday, and I keep thinking it will pass, but it's not passing. She did eat macaroni and cheese today, which was great. She didn't feel well and Mike was trying to find her something to eat, but nothing sounded good, so he ended up trying mac and cheese and it was a hit. She had three bowls before she fell asleep sitting up at the table. Mike took a picture--we'll have to post it soon.

Also, I need to take Annie in to the doctor tomorrow. Something is wrong with her knee. She started complaining about it hurting a week ago, and has been limping around off and on all week. This evening, she was playing in the back yard and suddenly started screaming. She kneeled down to get something, and when she stood up, she said she heard her knee crack, and it moved funny, and then it hurt really bad. We almost took her in to urgent care, but decided it could wait until the morning. Her knee isn't swollen or anything, and she can stand on it, but she can't bend it. I don't know what to make of it. Hopefully, we'll get some answers tomorrow.

We'll, I've written enough for one night. I'll update tomorrow with news on Annie's appointment and Sophie's illness. Spencer is the healthy one of the crew at the moment, and we'll hope that he stays that way. Thanks for checking on us.

Shauna

Tuesday, May 3, 2005 8:31 PM CDT

Sophie has been running a high fever for the last 2 days, so I (Shauna) took her into the pediatrician's office today. Her ears are clear, but her throat is a little red, so they did a strep culture. We'll know the results tomorrow. We suspect it might just be a nasty virus, but whatever it is, the poor little girl is miserable. Her fever is around 103/104 when she's not on Motrin, and the fever reducer never keeps her fever down for very long. She has been really fussy and lethargic today. She's not eating, but at least she's still drinking pretty well. We'll hope she doesn't share it with anyone.

I was checking Sophie's temperature today, and Sophie was fussing because she didn't want the thermometer under her arm. Spencer saw us and said, "You doing a pit check on Sophie, Mom?" It made me laugh. That's what Nurse Jennifer calls temperature checks at the oncology clinic. Spencer kept telling Sophie, "It's okay, Soph! It's just a pit check!" Then he let me do one on him to show her that it wasn't a big deal. This from the kid who, a year ago, was screaming bloody murder any time anyone came near him with a thermometer. Now, he's quite the expert on how to get your temperature taken cooly and collectedly. It's amazing how far he's come.

Tomorrow, Annie has ballet pictures--individual and with her class. Pretty exciting stuff. Hopefully Sophie will be feeling a little better by then. If not, she'll probably end up at home with Mike. It's one of the huge perks of having your husband work from home most of the time.

Well, I need to go to bed. I've had too many late nights and early morning workouts. I need some sleep. Thanks for checking on us.

Shauna

Sunday, May 1, 2005 12:42 PM CDT

Friday, Mike finished work a little early and we had a camp out. We roasted marshmallows and ate smores and Mike and I played the guitar and we sang songs. We had sloppy joes for dinner and pitched the tent. And the best part of all, we never left our house! That's right--Mike and I are avid campers, but we are not avid TEXAS campers. We haven't been able to get over the lack of mountains...and the plethora of bugs. But, the kids have been wanting to camp for a long time, and we needed a little family vacation, so we set up the tent in our family room--and we lit our little camp stove out in the back yard to roast our marshmallows and sing songs. The kids had a hey day sleeping in the tent, and it was a great bonding time for our family.

Saturday morning was rainy and cold (well, 48 degrees, which is cold for Texas), but Round Rock Soccer Association perservered with Annie's soccer game, and she had lots of fun. Our little fashionista was a little concerned about wearing tights and a long sleeved shirt under her uniform, as she was afraid she would be the only one dressed so, but she was finally persuaded and ended up being very happy that she had layers when we got to the windy, rainy field. She is so cute--at one point in the game, the sun came out. Her coach was setting them up and the ball was about to be kicked in. All the girls were gearing up for the play. He said that Annie was just gazing around and commented, "It really is turning out to be a lovely day, isn't it?" That's my Annie--she's an artist more than a sports fanatic, but she has a good time, and that's what matters, right?

Today we all went to church together. We've been passing different bugs around for the last few weeks, so this was the first time in about 3 weeks that we were all well enough to go, and it was really nice to be there, all of us--wiggly kids and all--sitting together on the bench.

As I'm typing, I can hear Mike talking to Annie in the kitchen about how next Sunday is Mother's Day and that we do things to make the day nice for our mom. Annie asked, "Like give her presents?" "Yes," said Mike. Then I heard Annie reply, "Well that's pretty clever for Mom, isn't it?" I guess it is. :0)

In some ways, it's been a really hard week for me. I know that every parent can relate to the desire as a parent to be able to protect your children from harm, and it's very distressing to come to the realization that it's just not possible. You cannot shield your children from everything. One day they will be hurt. I've been wishing all week that I could take back Spencer's cancer and all of the other hard things that my kids have been through in the past year or so. I've been feeling tormented that if I'd done things differently or had just known about this or that, then maybe I could have saved them some of their pain. But, the more I've thought about it, the more I realize that it's not the Lord's will to save us from every bad thing in life. And all of those trials serve a purpose. Adversity makes us stronger. And the Lord wants and needs strong people.

In church today, one of the speakers said something that really struck me. He talked about the Garden of Gethsemane. In Luke 22:42, Jesus prays saying, "Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine be done." Christ prayed that he wouldn't have to go through what he knew was coming. But, the answer to that request, as we all know, was no, and our Savior willingly died for us. Our Heavenly Father knew that the agony in Gethsemane and the pain on the cross were necessary suffering, and he did not take that experience away. It's a hard answer to take sometimes. But, I do know that experiencing sorrow is a necesary part of our lives, and as hard as it is, feeling that sorrow makes us feel happiness that much more intensely. I have never appreciated or cherished every moment with my children more than since I actually thought I might lose one of them. Another memorable thought from church today was that happiness should not be something that we consume; it should be something we generate. We don't need happy things to happen to us to be happy. We need to find happiness in the circumstances in which we find ourselves. That is what I need to be doing for my children--not trying to prevent every hard thing, but teaching them how to find happiness amid trials. That's a goal I can actually hope to achieve.

Well, I need to go. Thanks for your support of our family. We are so grateful for your continued love and concern for Spencer and the rest of us. We appreciate you.

Shauna

Wednesday, April 27, 2005 8:04 AM CDT

All day yesterday, Spencer was pretending to be a lion. He'd roar really loud once, and then do a series of little coughing/hairball noises over and over again. I had to laugh because when we were at the Fort Worth Zoo with my sister and her family, that's exactly what the big lion there did. He roared a big roar and then got a hairball and repeatedly tried to cough it up. Mike caught it on video, so I'll see if there's anyway he can put a link to it on here, then all you have to do is picture Spencer doing a pretty darn good impression of the same thing. It was cute.

So, I'm ready to pack my bags and head north again. As if the rattle snake in the garage wasn't enough fauna for one year--several nights ago, Mike found rats in the back yard. We have a little shed where we keep emergency water storage, and apparently some rats had taken to living there. SOOO, we called our pest control people and they brought traps out. Then, night before last, the kids were out playing in the back yard and Mike and I were looking at the garden. I sent Mike over to check the traps to see if they had done their job. Mike walked over and started to shake the box with his foot, when he suddenly said, "OHHHHHHHHH. Okay, it's time for the kids to go inside now." There was a snake who obviously found the rats appealing and had taken up residence in the shed. It was a bullsnake this time, although it looked and acted a lot like a rattler at first. It wasn't until after Mike killed it and we got a good look at it that we could identify it. Needless to say, I'm now completely freaked out and paranoid about letting my children play outside. I'm telling you WHAT, I have about had all I can take of snakes and rats and spiders and fire ants and more critters than I care to think about. Especially with summer approaching, I'm ready to head home to Idaho!

I just talked to Wendy Faherty, Jacob's mom, this morning. There's another rhabdomyosarcoma diagnosis here in Round Rock--a little 6 year old boy. So sad, and discouraging, and scary. It's really hard to think about.

There are some STARVING kids in my kitchen, so I'd better go feed them something before they turn mutinous. Thanks for stopping by.

Shauna

Monday, April 24, 2005 8:20AM CDT

Life is good. Spencer's hair is getting curly--well, at least REALLY wavy. It's really cute, and he continues to get compliments on it daily. Annie scored her first goal in her soccer game on Saturday. She was so excited. She almost scored two others, too. She is really getting better at soccer and we are so proud of her. Sophie is excited about sitting on the potty, even though she hasn't really figured the whole thing out. It's progress, though, which is great. I keep thinking I need to buckle down and potty train Spencer. It would make it a lot easier to really see what his bladder function and capacity and frequency and everything really is. He is just starting to show signs of readiness lately, but still refuses to really try, so I'm trying to be patient with him. I know that he's been through a lot in the last year and it will probably just take a little extra time for him to get there. I hope there are not a lot of issues with his bladder. After surgery and radiation on it, though, I'll be surprised if there aren't some. We'll just take it all as it comes.

My grandmother was very sick and in the hospital this past week, which was really scary for us. She seems to be doing better now, though, for which we are truly grateful. It's so hard to live so far away from all of our family at times like that (she lives in Idaho). I grew up a few blocks from her house, and we have always been very close. I spent one summer living with her during my college years. She's in her eighties, and has been struggling the past several years with her health more and more. My parents are not there, either, because they are on a trip out to New York to visit my oldest sister. It's been a stressful time, and I really wish that I could be there for her, but we are praying for her and trying to keep up on the latest through relatives.

This week should be pretty quiet (we'll hope). I can't believe how fast the year is flying by. Today is Spencer's 6 month anniversary of being off chemo. Can you believe it? It's flown by so much faster than his year of treatment. We are overwhelmed with gratitude every time we look at him with his head full of hair and rosey cheeks, running around playing with (and occasionally teasing) his sisters. It's a miracle and a dream come true. We are so very blessed. Thanks for visiting.

Shauna

Wednesday, April 20, 2005 5:37 PM CDT

I posted some Relay for Life pictures in the photo album. The survivors each had a purple balloon. An announcer called out years of survivorship, and each person released their balloon into the air when their survivorship year was called. Spencer SHOULD have released his at one year. Instead, he released his balloon (3 different times) before the survivors' lap began. (sigh) It was a nice thought, though, right Allie? :0)

Spencer got a polished purple stone in his survivor's bag that had the word HOPE engraved on it, along with a card that said that the survivors of cancer are a symbol of hope to those newly diagnosed. Just as a stone thrown in the water sends ripples outward, so can one person be an instigator of hope for many. Spencer is supposed to hang onto the hope stone until we meet another person who is newly diagnosed with cancer. We will then pass on the stone to that person and invite them to walk in the next year's Relay for Life with Spence. I thought it was a really moving idea, to pass hope on from one survivor to another. There was a survivor of over 50 years at the Relay. It was incredible, because she hardly looked 50 to me. That's going to be Spencer one day--this 80 year survivor of cancer (he'll only be 82) who makes everyone else think, "If he can do it, so can I."

The check up today with Dr. Sharp went well. Spencer's counts are awesome. His whites were 7.1, his hemoglobin was 11 something, and his platelets were around 207. All great! He was so happy to see Jennifer. It was cute. He was sitting on the floor playing with the dinosaurs when she came around the corner. When he saw her, his whole face lit up and he jumped up from the toys and ran over and gave her a big hug. He is getting to be so grown up. He was so brave getting accessed and checked out. He has grown! He's 103.2 centimeters tall and 38 pounds. Everyone commented on how thick his hair is getting, and how tall and grown up he's becoming. It makes me so happy, I always just sit there and beam when people tell me how healthy Spencer looks. He had a great time at the clinc. The hardest part of the day, as usual, was leaving, but he's even getting a little better at that. He didn't have to be carried out kicking and screaming, but by the time we were driving out of the parking garage, he said, "I'm ready for the fishy room again." It will be another long month without Jennifer, that's for sure! :0)

Jennifer said that she put his off treatment plan in the mail yesterday, so we should be getting it soon. There is no official off-treatment plan for Spencer's diagnosis, so they custom-made one for him, and it should be arriving any day now. Raquel scheduled his next set of scans for May 23rd. He's actually due at the beginning of May, but this way we can sneak a check up with Dr. Sharp and scans into the same visit and kill two birds with one stone. Spencer is acting so fine, I'm not really concerned about the scans, but I'm sure as they get closer my stress levels will automatically start to rise. This way I get to put off the stress for a few extra weeks.

Well, it's family scripture time, so I'd better go join the rest of the crew. It's funny, but the visits to the clinic feel more like a family reunion than a doctor's appointment these days. It's so fun to see Jennifer and the other nurses and Dr. Sharp and the Child Life Specialists. What an unconventional family, right? But a family nonetheless. Thanks for coming by. I know that I say this a lot, but it's true--we really appreciate all of the love and support that we recieve. Thank you.

Shauna

Sunday, April 17, 2005 3:29 PM CDT

Yesterday morning, Allie came with us to see Annie play one of her soccer games. The kids were really excited to have her come. Annie is getting better every week, and it's fun to see the little girls play together. Now, if we could only get the PARENTS to play nice together, we'd be in business. A couple of parents got into a near-brawl when one of the other team's little girls knocked one of our girls down. It was not a happy sight, but fortunately they broke it up before punches started flying. I swear, if only adults could have the problem-solving skills of their 5 year old children, we'd probably be a lot better off. It was a good game, though, and Annie had a fun time. She is really enjoying soccer season.

Last night, we went to Relay for Life. Allie helped Spencer do his survivor's lap. It was fun to see them out there together. He loves her so much, and she helped him enjoy his year of chemo and look forward to the oncology clinic, so we asked her if she would walk with him. He was the youngest survivor there, and I got several comments on what a cute little survivor he is. They played "I'm a Survivor" and "I will Survive" for the survivor's lap, and Spencer thought it was really funny to make me sing it over and over again on our way out of the event. I said, "Spencer! Say, 'I'm a survivor!" He did, and then he said, "MOM! I'm not a survivor--I'm SPENCER! You're silly, Mom." It was pretty cute. The kids spent a lot of time running around the bleachers in the stands, and they were all worn out by the end of the night. Every one of them went to bed really well for us once we got home.

Today, I stayed home from church with the kids. I gave blood yesterday, and for some reason, I've been feeling nauseated and light headed since. Sophie woke up sick with a nasty head cold, and Annie and Spencie were running low grade fevers, so Mike did a solo trip to church.

This Wednesday is Spencer's next check up with Dr. Sharp. He's very excited that he gets to go back to the fishy room and see Jennifer. We'll probably set up his next scans while we're there for the beginning of May. He is growing up. Last night, at the Relay for Life survivor's dinner, the speaker said, "It's with special meaning that I say, 'We're glad you could make it.'" We are so grateful for Spencer's good health and remission. Life is so good right now, and we are incredibly appreciative of that fact. I've seen so many sad stories lately, we count our blessings every day. Thanks for stopping by.

Shauna

Wednesday, April 13, 2005 5:50 PM CDT

More Bluebonnet Pictures Added

Yesterday was a good day. The kids and I went to the park with a few other cancer moms and their younger-than-school age kids. We are trying to organize an informal support group for families who are coping with the world of childhood cancer. Jacob's mom, Wendy, was there, along with Korey's mom, Brenda, Blake's mom, Lisa, and Garrett's mom, Colleen. Colleen brought her fishing pole and let Annie fish with her for a while, which Annie thought was the coolest thing ever. There were four 2-year-olds, including Sophie, so she was set for little playmates, and Spencer had Jeffrey, Jacob's little brother, who is just his age, to play with, so he was happy as could be. They played on the playscape for hours. It was great to visit with the other moms, some of whom I haven't seen since Spencer went off-treatment. We are going to try to meet once a month as famlies to let the kids play and to just visit as friends. I think it will be therapeutic.

When we got home, I was having just a casual conversation with Spencer. I was doing something else while I was talking, so I was only half-paying attention. I said, "Spencer, did you have so much fun?" He grinned, "YES, MOM!" I said, "Did you talk to Garrett's mom?" "Yes. He's died." I nodded, and then did a double-take. "What?" I asked. "He's died," he replied again. I was really taken aback, because no one said anything about Garrett passing away today. I was really surprised, and a little bothered that Spencer knew, and remembered, and was thinking about it. I think I have underestimated his understanding of everything that has happened.

Saturday is Relay for Life. We will go for the survivors' lap. I don't know how late we'll stay, but we want to go for a while, at least. It was such an inspiring event for us last year, we don't want to miss it this year. Allie is going to come hang out there, too, so Spencer will be thrilled.

After dinner tonight, Spencer said, "I want to go to the fish room. PYEEASE, MOM! PYYYYYEEEEEASE!" I told him he got to go next Wednesday to see Jennifer and Dr. Sharp, but that wasn't good enough for him. I said, "Do you want to call and talk to Jennifer on the phone?" "NOOOOO, Mom! I don't want Jennifer on the phone. I want to go SEE Jennifer. I'm ready to go! I'm ready to GO!" What a kid!

Annie had ballet today, and Spencer and Sophie came along for the ride. Everyone commented on Spencer's hair--it's getting really thick and redder by the day. It's almost time for a real haircut. I never thought I'd be so excited by hair. :0)

Thanks for checking on us. We appreciate your thoughts and prayers.

Shauna

Monday, April 11, 2005 7:15 AM CDT

We had a SERIOUS hailstorm last night between 1:00 and 2:00am. I was afraid that it was going to break our windows. The sound of it on our roof, walls, and windows was REALLY LOUD. It was crazy. Amazingly enough, only Sophie woke up through it. This morning, our yard is strewn with leaves and small branches from the trees, and our garden is in pretty sorry shape. I think the strawberries are destroyed, and the squash and zucchini may not recover. (sigh) I'm hoping that at least the squash will make a miraculous comeback. I think the carrots and onions fared okay, so, we may just need to replant some of our plants. Anyway, the cars and house seem to be okay, besides the green leaves plastered all over them. Crazy--I totally was not expecting that last night. Weather in Texas, right?

Mike and I have been sick the last several days, so we didn't go to church yesterday and everyone rested. I think it did both of us good to have a full day of down time. This morning I'm reeling a little better, so I'm hoping we're on the mend.

Well, I'd better go get ready for the day. Thanks for your guestbook entries and for your prayers. We really appreciate them.

Shauna

Saturday, April 9, 2005 8:30 PM CDT

My sister and her family left early this morning to head back to Idaho. It has been a nice week of visiting. The kids loved playing with their cousins. Yesterday evening, we all went and got some bluebonnet pictures and then headed to Gattiland for pizza and games. Everyone had a good time and got sufficiently worn out. I'm going to post some of the pictures in the photo album.

This morning, Annie had a soccer game, which Mike took the kids to while I spent the day in San Antonio at the Church Cannery, canning food storage. It was a busy day, but we have a whole bunch of wheat, rice, and sugar to show for it. Mike and the kids had a pretty quiet day, after the soccer game, and spent most of the day resting and unwinding from a very exciting and fun-filled week of playing with cousins. They were all on the living room floor building castles with mega blocks when I got home. Mike taught Spencer and Annie how to make "dogs" out of the legos, and Spencer loves making them and showing them off to everyone who will notice.

I've been on kind of an unexpected emotional roller coaster this week. Every time I allow myself to go look at other caringbridge sites, I find myself overwhelmed all over again by the magnitude of the childhood cancer world. And my predominate emotion is rage instead of sadness, which surprises me, but everytime I start getting caught up in the crises that these families have been through and are going through, I feel angry at the injustice of it all. It's so infuriating to me that so many children and families are suffering and grieving. I don't really understand the emotion, but it's really intense and hard to let go of. I feel like cancer is a big bully, and we are powerless to stop it, and we should be able to do something to stand up to it, and it's frustrating that we can't in so many ways. It's a strange emotion for me, and most days I don't feel it at all, but I have to be careful with how much time I spend looking at caringbridge sites, or dwelling on last year, because it so easily and quickly takes over my mood. We're all still struggling to find the balance of accepting our part in the cancer world without letting it still rule our life. I guess it will just take time.

I'm heading to bed. Thanks for checking on us.

Shauna

Sunday, April 3, 2005 8:28 PM CDT

**NEW PHOTOS ADDED**

Friday, my sister Karen, her husband Scott, and their three kids came into town from Boise, Idaho, for a week's vacation in the Texas sun. The kids are loving having cousins to play with. Yesterday, we went to the Fort Worth Zoo. It was amazing. It's one of the best zoos in the nation, apparently. It was the first time any of us had been there, and everyone had a good time. We completely wore the kids out, and they slept almost the entire way home. Karen and Scott and their kids stayed in Dallas last night with some of Scott's friends. They should be returning any minute now.

We have a fun week planned--lots of sight seeing and warm weather playing. We'll keep you all updated on the latest fun. :0)

We were saddened to hear of the pope's passing. Our thoughts and prayers are with our friends of the Catholic faith, and all those who are mourning such a great loss. What a remarkable man.

Thanks for stopping by.

Shauna

Thursday, March 31, 2005 10:27 AM CST

Spencer got another trim today, and it really looks like a real hair cut now. We still haven't taken anything off of the top, just cleaned up around his ears and the back of his neck. I took some pictures of the kids eating breakfast and put them in the photo album.

Yesterday, we were all eating breakfast together and talking about how we all have blue eyes. Mike and I would say, "What color are Annie's eyes?" and the kids would yell, "BLUE!" "What color are Sophie's eyes?" and they'd yell, "BLUE!" Mike said, "Yep, we are a blue-eyed family. Spencer was thinking about it and spoke up and said, "Allie's eyes are black!" It was pretty cute to us that he was thinking about Allie's eyes at the breakfast table. She came and played with the kids last Saturday, and they all had a great time. Allie is something special, that's for sure--especially to three little Jones kids I know.

Today is a beautiful, sun-shiny day. It's already 76 degrees and getting warmer by the minute. I think we'll head outside and enjoy the warm sun for a few minutes before we head to Sophie's Kindermusik class at 11:00. Thanks for checking on us.

Shauna

Monday, March 28, 2005 9:16 PM CST

**New Photos Added**

Happy Easter. Saturday, the kids enjoyed the church Easter Egg Hunt. Sophie saw that there was candy in the first egg she found, and she wanted to stop hunting and just eat her loot. We finally talked her into a looking for a few more eggs before she called it a day. Spencer is still talking about hunting for eggs. Sunday church was nice. Mike sings in the choir and I play the piano, and the choir sang two musical numbers, which went really nicely.

Today, I took Annie and Spencer to the zoo with Joy and her boys, while Sophie stayed home and napped and Mike worked from home. Spencer LOVED the zoo. He especially enjoyed the train ride that we took around the zoo. He kept pointing out the rocks and trees along the way. ("LOOK, MOM! A FOREST! LOOK, MOM! A ROCK!") We had a really fun time.

Annie had soccer practice this evening. We took dinner with us and ate at the park after she was done practicing. The kids loved playing on the toys. While we were there, we saw Garrett's family. They live right by the park, and we were happy to run into them. Colleen looked great, and it sounds like she has been really busy carrying on Garrett's legacy. She is getting all kinds of toys and crafts for the oncology clinic through the Garrett Burnham FUN Fund that they set up after Garrett passed away. It was so nice to talk to her. She was happy to see Spencer and loved his hair. She also tried to have a conversation with him, to no avail. He smiled to see her, but was too busy playing on toys to come over and really talk to her. I miss getting to see all of our cancer friends all the time, now that Spencer is off-treatment, so it was a real treat to run into Colleen tonight.

We watched a Charlie Brown video the other day. It's one of Annie's very favorite movies, and Spencer likes it a lot, too. It's called, "Why, Charlie Brown? Why?" It's about Linus's friend who gets leukemia and goes through chemotherapy. After it was over, Spencer said, "Mom? That little girl had cancer." I said, "That's right, Spencer." Then he said, "Spencer had cancer, too. Spencer's cancer's all gone." I was surprised that he made the connection and understood so much, but I hugged him and said, "That's right, Spencer. The cancer is all gone. No more cancer." "Yes, Mom. No more chemo. No more packpack." (IV backpack) It made me smile.

Life is going really well for us. We are enjoying our normal life and really relish all of the together time that we have these days. It feels almost too good to be true. Spencer's hair is getting down right unruly. It's starting to get wave to it and it just goes wherever it wants to go. I said something about it tonight, as I was trying to tame it for soccer practice, and Annie said, "But, don't you just LOVE his hair, Mom? Isn't it so fun that he has hair?" It's true. He just looks so healthy, I can't get over it. We are truly blessed. And we are SOOOOO grateful.

Thank you for you love and support. We appreciate all of you.

Shauna

Saturday, March 26, 2005 7:38 AM CST

Yesterday was Sophie's 2 year check up. She is still very petite--just 10th percentile on weight and 20th on height, but she is growing and healthy. Dr. Harvey, our pediatrician, did a very thorough abdominal exam. She asked if I find myself just feeling my kids' bellies every now and then, and I do. She said that she started out working in hemotology/oncology, and she had a new baby at the time, and she said that she'd go home and feel his abdomen just about every day. She said that when you are around cancer so much, you start to feel like it's common, even though it really isn't. I know the feeling.

Spencer came with us, and everyone was happy to see him looking so well. We were sitting in the waiting area, waiting, and Spencer said, quite pleasantly and quite loudly, "I don't want to come here, I want to go to the hospital." "Not today, sweetie," I replied. Spencer said, "Please, mom, I wanna go to the hospital. Please, please, please!" Needless to say, we got some pretty funny looks from people.

This morning we are heading to the church Easter Egg Hunt. The kids are very excited. We'll take pictures and post them soon. Thanks for stopping by.

Shauna

Wednesday, March 23, 2005 8:45 AM CST

Well, Spencer's cough is going away, so I never ended up taking him in to the pediatrician. It's so nice to see his body fight off stuff on its own.

Today Annie has ballet. Spencer loves ballet day. It makes me laugh. He gets more excited about going to ballet than Annie does. I think it's just the getting out and interacting with other kids, but it's pretty cute to hear him yelling, "YEA, BALLET! YEA! YEA!!"

Our garden is coming in nicely. Last night, Mike took the kids out to look at the beets that are starting to come up. Spencer and Sophie had already headed out, and Annie was still in the kitchen with me. She said, "We're pretty good farmers, huh, Mom. But when are we going to get the animals?" Then with a sad and disapproving shake of her head, she sighed. "Farmers without animals."

Well, I'd better get going. I have hungry children who need a little breakfast. Thanks for checking in on us.

Shauna

Sunday, March 20, 2005 2:10 PM CST

Things are going well at the Jones household. Spencer still has his cough, and Annie has picked one up, too, so tomorrow I'll call and set up appointments with the pediatrician to make sure that their lungs sound okay. Jennifer said that it was fine to take Spencer to the pediatrician for things like that, which is nice because it saves us money on the co-pay and cuts out a lot of time on the commute.

Tomorrow morning , we are getting a new full-size bed delivered for Annie, and Spencer is converting from his toddler bed to Annie's twin mattress. Jacob gave Spencer his old captain's bed, because he got Garrett's old bunk bed recently. It's a big rhabdo kids bed swap. :0) We really appreciate the captain's bed for Spencer. He's very excited about having a big boy bed, and the drawers underneath are just the drawer space that we were lacking.

Last night, Joy stayed with our kids and Mike and I went out on a date. It was nice to get out together. We need to do that more often.

I can't believe that it's almost Easter. We had an Easter Egg Hunt on Friday with Early Childhood Intervention. Duvette, Spencer's regular Intervention Specialist called and invited us to come. The kids had a great time, and it was so nice for Spencer to be able to see Duvette again. They had a special friendship, and he missed her when he turned three and she stopped coming to our house. She hardly recognized him with his blond hair. She kept saying how good and healthy he looked, how very healthy he looked. It was great to see her. We have a Candlelighter's Easter Egg Hunt on Wednesday, and one for our church on Saturday. I came home from church today and saw a picture from last year's church Easter Egg Hunt. The kids all look so little! I'll post some of the pictures in the photo album for you to see. I can't believe how far we've come in the last year, and how much has changed in our lives. Last Easter, Spencer still had the tumor in his body--the removal surgery didn't happen until the middle of April. Sometimes it's hard to believe that any of that really happened. Sometimes it's all too real.

Oh, and Friday after the Easter Egg Hunt, Joy and her boys and the kids and I went to Chucky Cheese's to play on the toys for a while. Spencer loved it. Well, all of the kids did. Sophie kept riding on the merry go round over and over again. I think it reminded her of Give Kids the World. Spencer and Annie climbed on the climbing toys for a long time. It was a huge step for me to take the kids there. I've been afraid of that place because of the germs, but Spencer's counts are normal again, and I don't have to stress out about stuff like that as much anymore. It's hard to retrain my brain, though. We had a really good time and I'm glad that we went.

We have church choir practice here in an hour or so, so I'd better get moving. Thanks for checking in on us. We appreicate your thoughts and prayers.

Shauna

Thursday, March 17, 2005 8:48 AM CST

**New Photos Added**

We had a fun evening last night. We went on a family trip to PetSmart. The kids love that place and had a great time looking at the fish and birds and mice and lizards. Then we went to Ben and Jerry's and had ice cream. Very fun.

I have a call in to Jennifer this morning about Spencer's cough. I'm not sure if it's something that we can just take him in to the pediatrician over, or if Dr. Sharp wants to see him. We'll see. I still haven't made an appointment about my foot. Mike says that I have a double standard. Any time he or the kids are sick or hurt, I rush them in to see the doctor, but when it's me... I just hate to have to pay co-pays if it's just something that needs time to heal. (sigh) I'll probably call on it today.

This morning when I got home from working out, I was standing in the kitchen, pouring myself a bowl of cereal, and I heard the patter of little feet behind me. I turned around to see Spencer running towards me. He didn't say anything, but had a smile on his face and his eyes were all lit up to see me home. I bent down and he about knocked me over with a big ol' hug. Then, he just sat there hugging me for a long time. Right then, as we held on to each other in the middle of the kitchen floor, I was suddenly overwhelmed with a feeling of privelege and awe--how lucky and blessed I am to be able to have such love in my life. I can't imagine my life without that little boy. I hope I never have to. What a good start to the day!

Well, I'd better get going. Thanks for checking in on us.

Shauna

Monday, March 14, 2005 6:36 PM CST

***Photo Update--I put some recent pictures of Annie in the photo album. I'll get some of Spencer up soon.***

Well, so much for the quiet weekend. Saturday was fun. We went to Annie's first soccer game, and she was very cute. The other team had a player that was a little Pele, and any time she touched the ball, she scored. But our little team didn't seem to notice or care much and Annie had a fun time, so I think it was a success. When we got home, I gave Annie a haircut, because I was sick of having to nit pick through her long, thick hair. She was very excited about the whole idea and looked through a hair magazine to decide what style she wanted. :0) Since I was cutting her hair, though, she couldn't choose anything too fancy and settled on a shoulder length bob. It's really cute on her. I'll take pictures tomorrow and post some, hopefully. As for her lice situation, I've finally gotten the last of the nits out of her hair and will do the final lice shampoo tomorrow. We are all glad to have that part of our lives over with.

Saturday evening, we headed over to the Layton's (a.k.a. Joy's house) for a barbeque to celebrate another friend's birthday. We had a fun time, except that Mike had to miss out on most of it because of a stomach bug. He ended up going to urgent care on Sunday for abdominal pain. He's okay now, but he was pretty miserable for most of the weekend. I need to take Spencer in to the doctor because his cough is getting nastier and nastier, and I want to make sure his lungs still sound okay.

I have a dental appointment in the morning, and I need to make a doctor's appointment for myself. I've been having pain in my left foot, and it's really putting a damper on my running. I can only make it a mile and a half before it's too painful to even step. I think it might be a stress fracture, or a pulled tendon, but I've been sticking to the eliptical trainer lately and need to get in to see someone to make sure there's nothing I should be doing or not doing to make it heal. I also tried to cut my finger off today. I was making juice and our glass pitcher broke and I sliced my left middle finger pretty good. I was trying not to freak out in front of the kids, but I couldn't get it to stop bleeding. So, I had Annie call Mike and he came home and helped bandage it. It's right on the topmost knucle on my finger, so any time I bend my middle finger, it reopens and starts bleeding again. So, Mike made me put it in a finger splint so that I can't bend that finger. It helps to keep it from reopening, but it also makes it very difficult to type, so please ignore any typos tonight.

We had a fun family home evening tonight. We finished planting the garden and the kids played outside. It's cooling off--we have a cold front coming through that's going to knock temperatures down into the 50's and 60's. Cold for us, but it would be a warm front for my parents in Idaho, so I can't complain. :0) Life is good. We are enjoying normal life more than I can say. I love having dinner every night together as a family around the dinner table. I love having days at a time without any appointments scheduled. I love that Spencer's cough, although we want to get it checked out, isn't sending us into a panic of whether his counts can handle it and whether or not we'll end up in the hospital. It's just nice to be normal. I hope we never take that for granted again.

Well, I need to get the kids to bed. Thanks for checking on us. We appreciate you.

Shauna

Friday, March 11, 2005 6:08 PM CST

Well, we had another near-80 degree day here, so of course the kids spent most of the day playing outside. Annie did manage to come inside for school and for a while to paint a ceramic with me (Shauna).

Spencer likes to play Spiderman now. He has never seen the movie, but our neighbor, Kenneth, is into Spiderman, and Spencer has picked up on it. He uses one of my old knit winter gloves, and I stick it on one of his hands, and he says, "I'm Spiderman! Sing the Spiderman song, Mom!" So, I do my best rendition of, "Spiderman! Spiderman! Does whatever a spider can. Spins a web, any size. Catches just like flies. LOOK OUT for the spiderman." He loves it, funny kid.

Tonight, I'm headed to a girls' night out at a friend's house, and Mike is taking the kids to one of his soccer games. Tomorrow is Annie's first soccer game, and she's very excited. We're hoping for a fun, relaxing weekend, to make up for last weekend's "lice fest." We'll keep you updated. :0)

Shauna

Thursday, March 10, 2005 10:18 AM CST

**New Photos Added**

Spencer's appointment with Dr. Brown on Tuesday went well, except for the fact that Spencer was not about to let Dr. Brown touch him. I guess he only behaves for Dr. Sharp and Jennifer. :0) Dr. Brown wants us to get a cysto-urethrogram sometime in the next few months, and then have a follow up with him in three or four months. I still am not sure what it entails, but it's a good test of bladder function and will let us know more if there's scarring or hardening of the bladder, or other problems. Dr. Brown is really great, and reminded me that we can call his personal cell phone any time of day or night with any questions that we might have. I really like him.

We are making serious progress on getting our garden planted. Our seedlings are all ready to go in the ground and we picked up gardening dirt, so hopefully this evening we can actually get it finished. Annie is so excited to be a farmer. She tells everyone who will listen about her garden and all the crops she's growing. It's pretty cute.

The weather is gorgeous here. Just beautiful. It's supposed to be around 80 through the weekend. We'll have to spend lots of time outside. Spencer has a cough, but I think it's allergies. I need to get him on some kind of allergy medicine soon. Other than that, he's doing well and is looking healthier and healthier. I saw a picture of him in his file at the radiation office that was taken of him while he was going through radiation. His face was gaunt and his eyes sunken, he was bald and had dark red circles under his eyes. I was shocked at how awful he looked. I don't remember him looking so bad, but I'm sure it was a gradual progression to that and then back to health, so it wasn't as noticeable, but looking at the picture and looking at him playing with toys on the floor, it was like two different children. It made me so grateful for how far we've come since then. We are truly blessed.

Thanks for stopping by, and for thinking of us.

Shauna

Monday, March 7, 2005 7:18 PM CST

Spencer's off-treatment party was a success. His appointment was at 9:00 this morning, and his party wasn't until 11:30, and it lasted until about 1:00pm, so he had a good long stretch of the day to play. He was so excited to see Allie and Jennifer. Child Life ordered pizza and had a special egg-free cake (Spencer and Sophie both are allergic to eggs) that said, "Congratulations, Spencer!" Jacob and his family came, along with Joy and Daniel (her son). We even had a visit from Thomas's mom, Holly, because Tommy is in the green unit (oncology unit) right now, which is just upstairs. Tommy would have come, too, but he was running a fever, which is unallowed in the clinic. Jacob gave Spencer a huge stuffed animal Little Foot, Allie gave him a box of small toy dinosaurs, and the clinic gave him a huge plastic sharptooth (t-rex). He thought life was pretty good. The clinic also gifted Annie with a big set of My Little Ponies that she is tickled pink over. All in all it was a really nice day.

Also, we got the GI scan results, and, strangely but wonderfully enough, they don't show a hernia. So, it's either just gone, or it was misread by the CT scan people in the first place. Either way, we are happy. Spencer hasn't been complaining of tummy aches lately, and is gaining weight and height like a mad man. Since his last visit, he's grown an inch and gained 2 pounds. Not bad, eh? The little man is making up for lost time.

Also, Dr. Sharp gave us an off-treatment plan, which is great. It dictates follow up checks every one to two months during the first year, every three months the second year, every six months in the third year, and then yearly for two years after that. Also, the protocol says that if radiotherapy was given to the bladder (which, in Spencer's case, it was), the volume and function should be assessed by voiding cysto-urethrograms or other imaging studies if indicated. I'm not sure what cysto-urethrograms are, but I'm sure I'll find out. Tomorrow morning is Spencer's follow up with Dr. Brown, the radiation oncologist, and I'll ask him about them, since that is related to the radiation side of Spencer's treatment.

In other news, I think we are on top of the head lice situation. I've been combing through Annie's hair daily, checking for anything new, and, dare I hope, I think we have taken care of the lice issues. I'll keep combing her every day for the next few weeks and will shampoo her with the lice shampoo in another week just to make sure, but I'm starting to feel less and less crawly all the time. We'll hope...

Well, I'm going to bed. I'm beat. Thanks for checking in on us. We appreciate your thoughts and prayers.

Shauna

Saturday, March 5, 2005 7:15 PM CST

Well, life is always full of surprises, isn't it? This morning, I went to brush Annie's hair for her soccer pictures, only to discover that she had a full blown case of head lice. So, I spent the entire day with a nit comb, going through her very thick and very long hair strand by strand. After I got Sophie up from her nap, I discovered that she had lice, too. So, today, which was supposed to be a kick back and relax day, has turned into a delouse the house day. (sigh) I guess there always has to be SOMETHING, doesn't there?

Yesterday, I was invited to attend a meeting with some other area cancer parents to discuss ideas for ways to get kids with cancer out and active. Colleen Burnham, Garrett's mom is the instigator behind the whole idea, and the Lance Armstrong Foundation will likely be backing it up. I was really excited to attend the meeting, which was somewhere in Austin. I left extra early because I tend to have a poor sense of direction and I wanted to give myself plenty of time to find the place. Two hours later, I still hadn't found it and had to give up and drive home. Very disappointing. Maybe next time I'll ask for a ride...

Tomorrow, I'll check Annie and Sophie again. We'll keep them home from church, and depending on how clean their heads look, I might have to reschedule Spencer's off-treatment party at the clinic on Monday. It's frustrating, but at least it's not cancer, right?

Hope you all have a good weekend. Thanks for checking on us.

Shauna

Thursday, March 3, 2005 12:11 AM CST

I've been meaning to update all week, and I've been running around like a mad woman and just never taken the time to actually do it. Spencer had his GI scans today. It went smoothly, although, from about 8:00 on this morning, he was begging and crying for food. I finally left the house around 9:00 even though our appointment wasn't until 10:30, because I couldn't take having him standing in the pantry crying for fruit bars. Anyway, it's over and Spencer was a very big boy. He held still for most of it, and only got a little restless towards the end. The radiologist will send the results to Dr. Smith, and then Dr. Smith will let us know. I'm hoping in the next day or so, but it may not be until next week that we actually hear anything, knowing how doctors' offices go.

Yesterday, Annie went to ballet and Spencer came along with us. He loves going to her ballet class. He gets to play with the other younger brothers and sisters of Annie's fellow dancers and he likes getting out of the house. Well, on the way out of the parking lot, he decided that it was time to go see Jennifer at the fishy room. He was very pleasant about it until he realized that we weren't really going there; we were going home. Then, he totally lost it. He was sobbing and pleading to go see Jennifer. "PYEEEEASE, MOM! PYEEEEEEEAAASE!" It was quite the drama.

Monday is Spencer's follow up appointment with Dr. Sharp, so he actually DOES get to go to the fishy room and see Jennifer before too long. It will also be his big off-treatment party that Child Life throws. Allie has Monday off of school, so she will be there, too. Mike is going to take some time off of work, and Joy and Daniel (her 2 year old) are planning on coming, too. I think it will be a really fun time.

Tuesday is Spencer's follow up appointment with Dr. Brown, his radiation oncologist. I can't believe it's already been 6 months since he finished radiation, but it's nice to have it farther and farther behind us.

Tomorrow is Annie's follow-up appointment for her tonsilectomy. We are certainly not short on doctor visits lately. I think after next week things should slow down a little, at least in the office visit department.

Spencer's hair is coming in thick and full. It has a strawberry blond look to it, but I keep hoping it will darken a little into his orangy red pre-chemo color, but we'll take whatever we can get. He looks very handsome and grown up, and everyone who knows that he used to be bald comments on how nice his hair looks, and everyone who has no idea that he ever was bald still has no idea because he looks just like any other kid. He is so full of energy and happiness, I can't believe it. He'll just giggle out of nowhere, and I'll say, "Spencer, you're silly." He'll get a big grin and say, "YES, Mom, I AM silly!" Then he'll giggle some more. I catch him just smiling at random moments during the day. It's such a welcome change from the little boy we knew a year ago, and even two years ago. He used to scream all the time. He hated to be touched. He didn't like hugs or laughing. Now he's hugging people right and left and is practically giddy at times. It's like life is really starting for him now, and he's loving it. He's so cute and he's talking more and more. He likes bananas and when I give one to him, he says, "I'm your monkey boy, Mom!" He likes imaginative play and pretends he's a dinosaur a good part of the day. His development is just leaping and bounding along. It's so nice to see.

We are doing well. There are hard days, where I feel like we'll forever be living in cancer's shadow, but more and more I'm trying to follow Spencer's example of spontaneous joy and loving life for what it is right now. My very wise aunt gave me some great advice the other day. She said that even if this is the "good time," and something bad is just around the corner, we shouldn't waste it by worrying about what may or may not happen in the future. (Thanks, Deborah!) We are getting back into routines around the house and I'm feeling really hopeful about our future. We have three happy, HEALTHY children, and we are so grateful for this moment! We'll just keep praying that it lasts.

Thanks for stopping by.

Shauna

Sunday, February 27, 2005 9:13 PM CST

The Lord always knows when I need a little humbling, and tonight was one of those occasions. We went to a birthday party this evening for the daughter of one of my friends. She is only 3 days younger than Sophie, and her family invited us over for cake and celebrations. Her great-grandfather was there and we had the privelege of meeting and visiting with him. He and his wife sat on the couch smiling and visiting with other family members. Mike and I sat on the floor next to them and struck up a conversation. He didn't speak completely fluent English and had a thick accent, so I asked them where they were from. He answered, "Poland," and he held up his hand to show us the tattoed numbers across his forearm. I, being ignorant, asked what they were from. His sweet wife, who spoke a little better English than her husband, said, "Concentration camp." He is a Holocaust survivor, and he was 22 when he was imprisoned and spent 5 1/2 years in concentration camps--Auschwitz for a while, and then another one whose name I didn't recognize. He is completely deaf in his left ear and is hard of hearing in his right. I was truly overwhelmed to be in his presence.

Here was a man who witnessed and lived through more horrors and suffering than I can even begin to comprehend. He was the only survivor from his cell block at one of the prisons. I can only imagine the atrocities that he experienced first hand. Yet the thing that really struck me about this sweet little old man was how happy he seemed. He was smiling and sweet and so kind. He played with Sophie, who was jabbering away to him, and although I'm quite certain that he couldn't understand a word she said, he was smiling and listening and responding to her just the same. He just had a sweet spirit about him and such a warm smile. I think about what an amazing example he is, of surviving something so awful and moving on and living and loving life despite a horrific past. I realized that if that dear man could move on after 5 1/2 years in a concentration camp in Nazi Germany, I can certainly heal and move on from a cancer diagnosis. It gives me hope. Life does not have to be about what has happened to you, or even what might happen to you. Life is about living and is what you make of it, and life is precious and joyful. I'm so honored to have had the opportunity to meet such a man, such an example, such a survivor.

I want us to move on, but I'm not quite sure how to do it. We are still so connected to the cancer world--we have friends that we care about who are still living in that world, chemo and radiation and doctor and hospital visits ruled our lives for an entire year, and we are one bad scan away from landing back in that world ourselves, but at the same time, I know that we need to look forward and find balance in our lives once again. I'm not sure how it's going to happen, but after tonight, I have more faith that it eventually will. We're going to be just fine.

Shauna

Friday, February 25, 2005 9:13 PM CST

Happy #2 Birthday, Sophie!

Spencer did NOT get scans done today. He got up and before I could think to stop him, stuck food in his mouth. Since it's a fasting scan, we had to reschedule. Next Thursday is the new day, and I'll have to be extra careful to not let him around food. Try explaining "fasting" to a 3 year old. (sigh) It actually worked out for the best since we could then have a big birthday waffle breakfast and birthday treats.

Sophie had a really good day today. She woke up and opened presents. Her little buddy Daniel came over to play for a while. She went to the store with me and got to choose out her birthday ice cream and a treat. She chose a Twix bar. I don't know how she knew that it was something yummy, but she apparently chose wisely and gobbled the whole thing single handedly. She then had lunch and took a monster nap (3 1/2 hours), waking up in time to go to Gattiland for dinner and games. After Gattiland, we went to Toys R Us. The kids all had gift certificates from the Christmas party that the Pflugerville United Methodist Youth threw for us. We let them each pick out a toy. Annie chose a unicorn. Spencer chose a shark, and Sophie chose a little Nemo fish stuffed animal. We also got a little miniature couch that makes out into a bed that is just Sophie size, and she is sleeping on it tonight. Then we came home and had cake and ice cream. It was a fun day for everyone, and we are all worn out.

Before I go, I just have to say how lucky we are to have Sophie in our family. She has been such a joy to us. She and Spencer are the cutest little friends together, and Annie loves mothering Sophie, carrying her around and teaching her things. Sophie is just such a little joy. I can't imagine our family without her--she really completes us. She was a ray of sunshine last year through the hard times. We love you, Sophie Beth! We are so glad that you are part of our family. Happy Birthday, Sweet Girl!

Thanks for checking in on us.

Shauna

Wednesday, February 23, 2005 9:52 AM CST

Spencer's GI Scan is Friday at 10:45 at an Austin Radiological Association office downtown. It was funny because I asked the receptionist that called where the facility was located. She said, "Oh, you've been here before, just a few years ago. It's down off of Red River." I thought for a minute and realized that she was talking about the ultrasound that Spencer had done as a newborn the day he was released from the hospital. To her, it was just a few years ago. To me, that feels like an ETERNITY ago. SO much has happened since then, there's no way I remember where that building is. So, I'll probably end up MapQuesting it. It's funny how perspectives differ.

Friday is Sophie's birthday. Last night we hadn't decided for sure what to do yet, so we were asking the kids for their opinions. Annie said, "I think we should all get up really early and SURPRISE her when she wakes up." After a little more discussion, Annie suggested Gattiland (a pizza place with toys and games). Spencer started cheering, "YEA! GATTILAND!" And Sophie shouted "PIZZA!" So, I think it's settled. Gattiland it is.

Oh, and I have a quick Sophie story before I go. She LOVES to go bye-bye and last night we went on a family walk around the neighborhood, which she thought was about the best thing ever. When we brought her back in the house, she was pretty heart broken and was crying and crying by the front door. We weren't paying too much attention to her, until we heard her making sounds like, "MMMMMMMMMWWWAAA! MMMMMMMMMMMMMMWWWWWWWWWWAAA!" We looked over, and she was kissing the front door very loudly between sobs. It was pretty funny.

Well, I'd better go. Today is another clean the house, get stuff done day. Thanks for stopping by.

Shauna

Monday, February 21, 2005 8:32 PM CST

NEW PICTURES ADDED

Spencer went to see Dr. Smith today. Mike took him because I couldn't really bring myself to go back to that office. I hate that place. It's just downstairs in the Children's Hospital from the Oncology Clinic, and that was where we spent the whole first day that Spencer was diagnosed. That's where we first heard the word "tumor." We sat in the office waiting room for over 5 hours while Spencer cried and screamed and vomited red gatorade (from the CT scan) all over me. Dr. Smith came in and out in between surgeries all day long, but it was never to talk to us. Very late in the afternoon, I was in a back room pumping a bottle because I was still breastfeeding Sophie and hadn't been able to feed her all day. When I came out, Dr. Smith was sitting across from Mike. Spencer had finally passed out on Mike's lap from exhaustion. Dr. Smith had already told Mike the news, and as soon as I saw Mike's face, I knew that things were not going to be okay. When I think about that moment, it feels like the whole thing happened in slow motion, except for my thoughts. I walked over next to Mike and I was frantically thinking, "No. No. No. He's going to be fine. It can't be THAT bad. It just can't be THAT bad. He's going to be okay." I sat down on the couch, and as I did so, a wave of realization swept over me, and I knew before anyone spoke that it WAS that bad and it very well might not be okay, but at the same time I knew that WE would be okay and that we would be able to handle whatever was coming at us. I took Mike's hand. Dr. Smith said that Spencer had a very large abdominal tumor, and he thought it looked like lymphoma, but we wouldn't know until he'd done a biopsy of the mass. From there we went up and got checked into the hospital and I called my parents and Mike's to tell them that our little Spencer had cancer. Every time I see or even think about Dr. Smith's office, all I can see is that moment in that waiting room when our lives were forever changed, and I avoid that place every chance I get.

Mike graciously took work off to take Spencer for me, and he said that the appointment went smoothly. Dr. Smith wants to do an upper GI scan to get a better picture of what the hernia looks like and how bad it is, so his office will be calling us soon to set that up.

After the appointment, Mike took Spencer upstairs to the fishy room to see Jennifer. That pretty much made Spencer's day. Before they ever left, I was talking to Spencer and said, "Spence, you get to go to see Dr. Smith today." "I don't WANT Dr. Smith! I want Dr. SHARP!" You gotta give him credit--he knows his doctors. :0) Mike said that Spencer did very well and was really well behaved the entire time...well, up until Mike tried to get him to leave the fishy room, that is. Then, it was mayhem, but I'm glad that Spencer got to go see Jennifer. He was talking about it when he got home. And he kept telling me over and over tonight that he saw JENNIFER and played in the FISHY ROOM! I'm so glad that he has good memories of his treatment. I hope the only things he remembers from his life as a cancer patient is that he loved the fishy room and Jennifer and that he was loved in return.

Thank you for your thoughts and prayers. I know that you all have your own trials and burdens, and we appreciate that you have room in your hearts and prayers for our little Spencie Boy. (He gets mad when I call him little now. "I not YIDDLE! I a BID BOY, Mom!") (sigh)

Shauna

Sunday, February 20, 2005 2:32 PM CST

I (Shauna)had a dental appointment on Friday. About 2 hours before my appointment, the Blood Bank in Round Rock called and said that they were low on donations, so Joy took Spencer and Sophie, and Annie came with me to hurry and donate before the local anesthesia the dentist was going to give me made me ineligible for another week. Every time I go I realize what a simple act and a precious gift it is to give blood. Spencer got blood at least 15 times last year, and I'm so grateful to those who donate. They are still really low on several blood types, so PLEASE, PLEASE go donate if you can.

Next, I headed to the dentist. He was asking me how my day was and I told him that I had given blood. He asked me if I did it often, and I told him about Spencer and how I now feel an obligation and sense of urgency about donating. He shared that he, too, is a cancer survivor. He had colon cancer and went through a year of chemo and radiation and then relapsed three years later and went through another 6 months of chemo. I never would have guessed or known--it constantly amazes me how many lives are touched by cancer. There are so many more than I ever realized before we became part of that world. He said that he is part of a support network here in Austin called CanCare, which strives to improve the quality of life for individuals and families affected by cancer through emotional, spiritual and practical support. He gave me a flyer, and I was touched by the last sentence. It said that "life is a sacred and precious gift, to be measured in richness and meaning -- not only in length." I feel like that is one of the blessings of our cancer journey. I have learned that life is really about the depth and breadth more than the length. I think of Garrett and can't help but feel that his life was so full, even though it was too short.

Yesterday was the KASE 101 Make-a-Wish Radiothon. They were trying to raise $250,000 so that they could grant all of the wishes of children on the waiting list. I'm happy to report that they raised over $260,000. Around 2:00 yesterday I was interviewed about Spencer's wish trip. On the way out to the mall where it was held, I heard Morgan tell her wish story, and on the way back, heard Jacob tell his. It was really rewarding to be a part of that effort. Such an incredible organization. I'm glad that the event was so successful for them.

I heard a song on the radio on the way home from the radiothon. It's by Tim McGraw, and I don't know how old or new it is because I don't normally listen to country songs, because, well, because my husband has an inexplicable hatred of country music and I'm usually with him when I listen to music. I think it's the city boy in him. :0) I liked the lyrics, though, so I'm posting them here:

"He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
how's it hit you when you get that kinda news
man what'd you do

and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named FuManchu
and I loved deeper and I spoke sweeter
and I gave forgiveness I'd been denying
and he said someday I hope you get the chance
to live like you were dying.

He said I was finally the husband
that most the time I wasn't
and I became a friend a friend would like to have
and all the sudden going fishin
wasn't such an imposition
and I went three times that year I lost my dad
well I finally read the good book
and I took a good long hard look
at what I'd do if I could do it all again

and then
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named FuManchu
and I loved deeper and I spoke sweeter
and I gave forgiveness I'd been denying
and he said someday I hope you get the chance
to live like you were dying.

Like tomorrow was a gift and you got eternity to think about
what'd you do with it what did you do with it
what did I do with it
what would I do with it?

Sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named FuManchu
and then I loved deeper and I spoke sweeter
and I watched an eagle as it was flying
and he said someday I hope you get the chance
to live like you were dying.

To live like you were dying."

Words to live by. Thanks for stopping by.

Shauna

Wednesday, February 16, 2005 10:02 PM CST

I'm really tired, so I'll keep this short. Big day, yesterday. Spencer got his first haircut! He was not thrilled about the whole thing, but it was brief and he survived. Really, all we did was trim the back and around his ears, but it looks like a real haircut! I'll take pictures tomorrow to post. It's so fun to see him with hair. I almost forget sometimes that he ever DIDN'T have hair--it just looks so right. Oh, and I'm very excited, because it's starting to turn a little red. It's still not as red as it was before, but if it catches the light just so, you can definitely see some red in it.

We spent the day cleaning today. I feel like it's high time I reclaimed the house post-chemo, so I've been organizing and rearranging like crazy. And I'm pretty pooped. But, Annie was a big help, and even Spencer and Sophie chipped in some, so the place looks a lot better. There's still some closets and spaces that need a good re-org, but that will have to wait for tomorrow.

Also, tomorrow, we're going to go get seeds at Home Depot and start a garden. Annie is so excited. It's all part of her dream of being a farmer. I just hope that Spencer and Sophie catch the vision and don't demolish it before it has a chance to grow.

Alright, I'm off to bed. Thanks for stopping by.

Shauna

Tuesday, February 15, 2005 3:37 PM CST

The Heffalump Movie was fun yesterday. Joy and her boys went with us. We got to the theater pretty early, which ended up being a good thing because I forgot to give Annie her pain medication and she was hurting pretty badly, so we had to leave and head to the nearest gas station for children's tylenol, and it still had time to kick in in time for the movie. The kids all sat very quietly and enthralled through the whole thing. All the way home, Spencer kept saying, "So fun! The big movie--so fun!" And, you know what? The theater was packed, and I never once thought, "I wonder what Spencer's counts are. Should we be here?" We stopped and got chicken nuggets and frosties at Wendy's and had a picnic in the driveway. It was a little over 80 degrees yesterday, so it was the perfect day for a picnic. All in all it was a really nice and much needed day out for all of us.

Mike and I had a romantic Valentine's Day date last night. Romantic, that is, if you think eating left-over pizza and watching "Super Nanny" on tv while lying like lumps on the couch is romantic. Yes, yes, I know, we really set the bar high. :0) We actually had a really nice triple date on Saturday night with Joy and Steve and another couple that we are friends with. We went to Truluck's, which is a very nice, upscale restaurant downtown and had a delicious dinner and a very fun evening, so we felt justified in keeping everything low key last night. Well, and then adding in the fact that I could hardly MOVE from the marathon the day before, we decided dancing the night away was pretty much out of the question. We did have fun and spend time together, though, and that's what counts, right?

Spencer is getting smarter and smarter and thinks he can now out-smart his mom and dad when it comes to logic. For example, I usually give him the choice of napping on my bed or his bed. Well, today when I said, "Spencer, do you want to nap on Mommy's bed or Spencer's bed?" he thought for a minute and then said, "I want a time-out!" He'd figured out that time out (3 minutes) was shorter than nap and thought he could fool his old mom. No such luck. He's upstairs sleeping now.

Oh, and today Spencer and Daniel (Joy's little boy) were playing together in the back yard and somehow uncovered an army of fire ants (I still can't find the mound). They both got eaten alive, although Daniel took the prize for the most bites (I think he had around 50, while Spencer's count was somewhere in the low 20's). The craziest part of it all was that they hardly even reacted to the whole event. Those two both have pain thresholds through the roof. Daniel was mildly fussing, and I went out to see his feet covered in fire ants, and he was trying to pick them off one by one, mostly annoyed that they were on him, while Spencer was pretty much oblivious to the whole thing. After I cleaned them off and dosed them with Benedryl, they acted like nothing had ever happened, and for those of you who have had a fire ant bite before, not to mention 50, know that that is saying something. TOUGH!

Well, I'd better get going. Mike always looks at my entries and says, "I couldn't write that much even if I TRIED." The gift of gab, what can I say? :0) Thanks for stopping by.

Shauna

Monday, February 14, 2005 8:44 AM CST

Well, folks, I ran a marathon yesterday. And although today it almost feels like the whole thing was a dream, my incredibly sore legs and black and blue toes are testaments that it really happened. It was incredible. I woke up yesterday around 4:30 and couldn't go back to sleep because I was so excited. I started getting ready, and at about 5:15 I saw a flash of light outside my window, followed almost immediately by a crash of thunder, followed almost immediately by the sound of rain pelting the house. I looked out the window and there were curtains of water being blown along the street. It was one of those torrential Texas rains--really very cool to see if you are staying indoors, but not so much if you are planning on going out and running 26.2 miles. Joy came over and we headed off to the race. Her windshield wipers were going as fast as they could and we still couldn't see in front of us. By the time we got the start area, it had slowed to, say, an Idaho rain--where it was raining, but not pelting. I met up with Allie's mom, who ran the half-marathon, and we started the race together. Allie and Joy stuck together to cheer us on along the way. The rain stopped about the time the race started, so it was really nice for about the first three or four miles before the sun came out and things got really hot and humid. It was about 75 degrees here yesterday--the perfect day for a nice stroll in the park, but searing heat when you're running a long distance.

Allie and Joy were my motivation. They met me at about 6 miles and then every few miles past that to cheer me on. When I was tired and felt like quitting, I'd think, I just have to make it 3 more miles to see Joy and Allie again. I can make it three more miles. And then I'd do it again. I felt really strong until about mile 18 or 19, and then the heat and dehydration caught up with me. By the time I hit 20 miles, I was ready to quit. I felt nauseated and exhausted. That was the point that Allie jumped into the race and ran the last 6 miles with me to keep me going and motivated. She was a life saver, I'm telling you. She kept encouraging me and telling me I was doing great. The last mile was the longest of my life. It felt like it went on and on forever. I was trying not to cry, because every time I started, I couldn't breathe right, so I'd make myself concentrate on my breathing. When I crossed the finish line, I found Joy and just started sobbing. We were both crying and hugging each other.

The whole run was very emotional for me. I saw a lot of runners with Team in Training, who run to raise money for the Leukemia and Lymphoma Society. They all had names on the backs of their shirts of people they were running for. I saw some girls running in honor of their mom, who had passed away from cancer. I saw so many people running in memory of those who had lost their lives to cancer. Every time I saw one, I had to focus on not crying, so that I could keep running. Every time I wanted to quit, I looked down at my LiveStrong bracelet, along with the bracelet that Allie's mom gave me at the start of the race that said, "Failure is not an Option" and I thought of Spencer. I remember so many times we felt beaten and overwhelmed last year, but giving up never crossed our minds during our "marathon" year, and I knew I couldn't give up either. It took every ounce of determination I had to run across the finish line yesterday, but I never doubted that I would. I called home on Joy's cell phone after the race. Mike stayed home with the kids because Annie is still supposed to avoid crowds after her tonsilectomy. I talked to Spencer and cried and told him how proud I was of him and how brave he was and how I thought of him the whole time I was running and that he was my inspiration. He was cute. He listened and said, "Yes, Mom. I love you, Mom."

So, I did it and I'm so glad that I did and that it's done. I feel like it was something that I did against all odds this year, kind of like Spencer's victory over cancer. In fact, I really wished that I'd had a shirt or a sign or something to carry over the finish line that said, "My 2 year old kicked cancer's butt, and all I did was run a marathon." So, now I'm going to take a week off from running and enjoy my sore muscles and aching feet before I decide what to conquer next. Thanks for all of your support and encouragement. You all kept me going when I felt like quitting. A special thanks to Joy, who really wanted to be running with me yesterday, but who was with me in spirit and in body at check points all along the way. She is amazing. And thanks to Allie, who kept me going at the end and who has made such a difference in the lives of my kids. You two are AWESOME!

Well, I'm going to go. We are heading to see the Heffalump movie in the theaters in just a few minutes. Should be fun. Thanks for stopping by.

Shauna

p.s.--I scheduled Spencer's appointment with the surgeon for next Monday, the 21st. Hopefully, he won't need surgery, but it will be good to get it checked out.

Friday, February 11, 2005 8:59 AM CST

Okay, I posted new pictures, but I must warn you, the first one is of Annie's tonsils, so if you don't want to see them, don't look! The other two are very cute, though. :0)

Note: I (Mike) have removed the tonsil photos. If you really, really want to see them, you can email my crazy wife.

We had car thieves pass through our neighborhood last night. Joy and Steve's new Chevy Tahoe got broken into and is a mess this morning. There were two other SUV's that got broken into as well. The police are just making their rounds down our street this morning. Scary. I'll be glad for Mike to get home today.

Jennifer called and we need to make an appointment with Dr. Smith, Spencer's surgeon, to have him evaluate the hiatal hernia. Dr. Sharp wanted Dr. Smith's opinion on the matter, so I'll be calling on that today.

Spencer's speech is improving by leaps and bounds still, and he just has so much energy. One of my friends saw him the other night when I was in the hospital with Annie, and she commented on how alive he was, just jabbering and bouncy. It's true, he is like a new kid with a new lease on life. It's SOOOOO nice to see.

Annie's feeling a lot better today. She even got dressed and made her bed, and I haven't given her any pain medication this morning, and she seems to be fine. I'm glad that this whole thing has gone so smoothly. I was rereading all of her guestbook entries to her last night. She said, "But maybe WE should write a message to say thank you for all of the nice messages." So, THANK YOU from Annie. It has really meant a lot to her.

The Freescale Marathon is this weekend, and I'm getting nervous! Should be fun. Annie is supposed to avoid crowds for the next week or so, so Mike and the kids will stay home, but Joy is going with me, and Allie's mom is running the half-marathon, so we are going to meet and run the first half together. That should make it go faster. I'm just praying for good weather.

Well, we are counting down the hours until our favorite dad returns home tonight. We are all homesick for him and will be so happy to have him back with us again. I used to laugh at my mom when she'd come stay with me after I'd had a baby and she'd be going through withdrawals for my dad the whole time. Now, I think I'm just about as bad as she is! :0) I can just imagine where I'll be after 35 years of marriage, which is about how long my parents have been married now.

Thanks for stopping by. We appreciate your support.

Shauna

Wednesday, February 9, 2005 1:52 PM CST

**New pictures from Annie's surgery added**

We are home from the hospital! Annie did really well and was very brave. She wanted to see her tonsils when they were out, but since Dr. Kriesel, her surgeon, couldn't bring them out of the operating room, he borrowed our camera and took pictures of them so Annie could see them when she woke up. After the surgery, Dr. Kreisel came out and said, "She had MASSIVE tonsils and MASSIVE adenoids. I mean, I've seen kids with big tonsils and adenoids before, but these were HUGE!" He said she was definitely not getting good quality air flow and that it was definitely the right decision to remove them. She woke up in some pain, but before we left the recovery room it was under control and besides some discomfort this morning when she woke up, she has done remarkably well.

Allie came to visit her in the hospital last night and brought flowers and a balloon. Annie was thrilled. Her dad and both grandmas called, too, which she thought was cool. Some volunteers brought around some Mardis Gras stuff--kits to make a jester's hat and a mask and a ribbon to twirl. Allie and I were more entertained than Annie by the crafts, but couldn't really get the jester's hat to stay glued together, so we got some pictures and then threw it away.

It was great to come home today and see Sophie and Spencer again. They were both very excited to see Annie and were pretty disappointed that she headed straight for her bed and has stayed there since she arrived home. Annie was up until 11:00 last night watching movies and eating pudding and ice cream. She was excited that we got to stay the night. She thought that the sleeping she did while under the anesthesia counted as her "sleep over" and was quite thrilled to learn that she actually got to stay a real night, too. It was a nice chance to spend some one-on-one time with Annie. She has been forced to grow up too quickly, and I expect a lot from her. It was nice to just let her relax and get pampered by mom for a change. She slept so silently last night, it was really amazing to me. Dr. Kriesel said this morning that her throat is still swollen from the surgery, too, so her sleep will only improve over the next few days. I'm very happy for Annie.

Well, I'd better get going. Thanks for the messages in the guestbook and for your thoughts and prayers. We really appreciate them!

Shauna

Monday, February 7, 2005 4:12 PM CST

** New Photos Added**

Mike arrived safely in Chicago. The kids are already going through withdrawals. Okay, okay, so is their mom. (sigh) We'll hope the week goes by quickly.

Annie and I have to be at Children's Hospital tomorrow at 11:45 and her surgery will begin around 1:15. We made a family field trip to the grocery store this afternoon to stock up on the tonsilectomy essentials--icecream, jello, pudding, popsicles, etc. Annie's really looking forward to it, but I'm kind of dreading post-surgery. Annie's pain threshold is, well, let's just say that it's not quite as high as Spencer's. I hope she does okay after she wakes up and realizes that, although she can have all the ice cream she wants, she probably won't want to swallow much of anything for a while. It will be good to get it over with, though. I'm hoping for a much improved quality of life for this little girl.

Tonight I let Annie choose whatever she wanted to eat for dinner, since it will be her last solid meal for a while. My little gourmet chose grilled cheese sandwiches and tomato soup. Mmmmmmm.

I'd better get going. I'm having a hard time being very productive lately. I have to make myself get up and do things. Garrett's death has hit me harder than I thought it would. I thought I had prepared myself for it, but apparently I didn't do a very good job. I feel sadness and then almost rage and then gratitude that it's not Spencer and then sadness that it's so many other children in the world and then anger that we can't figure out how to stop the dying and then guilt that cancer is still managing to control my life even though Spencer has beat it, and the emotions just keep cycling. I want to put it all behind me. To have a full day where I don't think about cancer, don't fear it, don't wonder which child it will take next. Will that ever happen? I doubt it. We are permanently changed and there's no going back. I want to get to a place where I think about it less, though. It doesn't deserve to rule our life. It could not beat Garrett's spirit, and we shouldn't let it beat ours, either.

Children with cancer are amazing that way. I overheard a conversation in the clinic once. One of the little girls was talking with one of the child life specialists about wishes. The specialist said, "If you could have one wish, what would it be?" I thought I could guess the answer. But, the little girl thought for a moment and then said, "I would want a cat. That would be the coolest thing ever." They are the most unselfish, least self-pitying people I've met in my life. At Garrett's funeral, a family friend said that after Christmas (which was HUGE because they knew it was Garrett's last), she asked Garrett what his favorite gift was. Do you know what he said? "I think the best gift was spending time with my family." I could learn a thing or two from these kids.

Well, I'd better go make some grilled cheese sandwiches. Thanks for visiting.

Shauna

Sunday, February 6, 2005 12:51 AM CST

I went to Garrett's funeral yesterday. His mom gave a beautiful eulogy. She was so composed. Garrett looked so peaceful, lying in the casket with his baseball cap on. I went with Joy and sat next to Allie and in front of Jacob and his family. Cynthia, Mary, and Ellen, who are the Child Life Specialists, sat across the way. I saw Hannah, Garrett's nurse, walk in. There were so many people there, it was incredible. It was a really lovely service. On my way in, I ran into Garrett's little sister, Caleigh. I said, "Hi, Caleigh. How are you?" She threw herself into my legs and hugged me for a long time. I hugged her, too, and then had her show me her pretty new dress. She's Annie's age--5 years old. Too young to be going through this. And Garrett's brother Kyle, who's only 7, stood up during the service and said that Garrett always stood up for him and he loved him and was glad that Garrett was his brother. It was extremely emotional for me to be there, but I'm glad that I went. It was a beautiful tribute to an amazing little boy.

Then, I came home and took Spencer on a date. Mike took Annie and Sophie, and we doubled for the first part of the date. We all went to PetCo and looked at the fish, lizards, frogs, birds, mice, and snakes. Then, we stopped and got Krispy Kreme donuts and Mike picked up "The Little Mermaid" to watch with his little dates at home, and Spencer and I went to Target and picked out a big boy potty and some big boy underwear. I'm trying to get him excited about the idea of potty training, and we was pretty happy about coming home and showing Dad his new stuff, but we'll see if it actually translates into USING his new stuff. It was nice to spend some time alone with him. He kept saying, "Mom! I'm on a DATE!" I'm not sure he really understood what that was, but he sure liked saying it.

Annie gave a talk in Primary today at church. She talked about how Heavenly Father had answered her prayers. I was helping her prepare it yesterday. At first she wanted to give a talk on how she lost her tooth on Thursday, but I told her it had to have something to do with Heavenly Father and Jesus, so we decided to talk about prayer. I said, "Annie, has Heavenly Father answered your prayers?" She said, "Yes." I said, "Can you think of a time when he answered your prayers?" She thought for a minute then said, "Well...Spencer, one time..." I was thinking she was going to say that she had prayed that Spencer's cancer would go away, and it did. I was thinking what a great story that would make for Primary. Then, she said, "Spencer used to not like pizza. So, I prayed that he would like pizza, and now he does!" We ended up settling on a story about when we were driving in the car one day and got stuck in a huge traffic jam. I was getting really frustrated and Annie suggested that we say a prayer. So, we did, and seconds after we finished the prayer, the cars started moving. The faith of a little child... Anyway, she did a great job and we were very proud of her first Primary talk.

Mike leaves again in the morning for Chicago. This weekend has gone by WAY too fast. Hopefully, this next week will hurry along, too, so he can get back home to us again.

Thanks for stopping by.

Shauna

Thursday, February 3, 2005 7:30PM CST

**New Pictures Added**

I've decided that you can learn some interesting sides of a person when you share a bed. For instance, growing up, I always shared a bed with my older sister, Heather. Whenever it was cold, I'd go climb in bed and huddle into a ball and stay there until I had a nice cozy spot for myself. That's about the time Heather would come in and climb into bed and stick her cold feet on me until I moved and she took my spot. And then there's Mike. Once my husband's head hits the pillow, he's pretty much worthless for real conversation. I mean, I'll be telling him a really interesting and lengthy tale about how I single handedly saved the world by changing 6 messy diapers and doing 10 loads of laundry while still managing to cut out the squares for my latest quilting project. "Isn't that so COOL!" I'll say, just in time to hear the first solid snore erupt from the pillow next to me. I've just learned that if I have something important to tell Mike, it has to be before we actually retire to bed at night.

So, while Mike has been in Chicago this week, the kids have each taken turns sleeping with me in my bed. It's been an interesting experience to say the least. The first night was Annie's turn. It was really exhausting. I thought that Mike snored, but, really, I've never heard anything to compare to the noises she was emiting Monday night. She'd start out softly and then the snoring would build and build, and then suddenly stop. Silence. And more silence. And then a big GASP of air, followed by more silence and another gasp--three or four apneic episodes in a row, before she'd finally rouse enough to roll over and start the snoring again. I swear, I am amazed that that girl feels like she has had any rest in the morning, because I sure didn't. She was tossing and turning and snoring and gasping all night long. I'm counting down the days to her tonsilectomy/adnoidectomy more than ever now. It stressed me out just to LISTEN to her sleep.

Tuesday was Spencer's night. Did you know he's a sleep whisperer? With almost every breath out, he's whispering words. At first, I thought he was awake and really whispering to me, but then realized that he's just talking silently in his sleep. It was really interesting. I couldn't ever figure out what he was saying, but it was a little disconcerting to be half-asleep or half-awake and hear almost constant whispering right next to my ear. But, I've decided that if anyone has enough life stories to tell day AND night, it's Spencer.

Then, last night was Sophie's turn. She sings/talks to herself for two hours to put herself to sleep. I heard Eensy Weensy Spider and Twinkle Twinkle Little Star about 50 times each. And then she has little coversations with herself. "Yes. No. Yes! No!" She also thinks it's HILARIOUS when you tell her to "shhh." I mean, HILARIOUS. Oh, and I knew that Sophie was a snuggly girl, but I had no idea HOW snuggly. She'd work her way into me further and further until I'd finally run out of bed space and have to get up and go around to the other side of the mattress, and then before I knew it, she was snuggled soundly into my back again. I had to switch sides of the bed 3 or 4 times last night. And she was blissfully asleep the whole time. My little cuddle bug.

So, tonight I'll be sleeping alone, I hope. Mike comes home tomorrow, and we will all be SO happy to have Dad back home. He's going to take Sophie and Annie on a Father/Daughter Valentine's date, and Spence and I will do a Mother/Son date. Should be lots of fun.

I can't stop thinking about Garrett's family. While we are celebrating clear scans, they are mourning. Annie was crying last night about Garrett's death. I said, "Annie, where is Garrett?" "I don't know... Oh, in heaven." "And who is Garrett with?" I asked. "With Jesus." "Do you think Garrett is happy or sad." She smiled. "He's happy." "That's right. Garrett is happy. He doesn't have any more chemo, or pokes, or hospital stays. He doesn't feel tired or sick anymore. He's happy." Anne thought for a minute, then said, "Garrett's happy, but his family is sad." "You're right, and we can be sad, because we miss Garrett. We can be sad for his mom and dad and brother and sister, because they miss Garrett. But, we shouldn't be sad for Garrett, because Garrett is happy and his cancer is gone forever." That seemed to calm her, and she settled down and went to sleep.

But, I couldn't sleep. I keep trying to make sense of it all, and I just can't. I have no idea why some are taken while others are allowed to remain. I believe that the Lord has a plan and that his vision far exceeds my own, and I have to say, it's a good thing, because I can't see much rhyme or reason to it all sometimes. Sleeping with Spencer the other night, I kept reaching out and holding his hot little hand in mine and thinking how lucky I was to be able to do that. I was just lying there, listening to him breathe. How lucky is that? I mean, really, how LUCKY and blessed is that?

Well, I've rambled on long enough for one night. I'm telling you, this website is my therapy. Even if I thought not a single soul looked at these pages, I'd still be here, pouring out my heart on the computer. Thanks for listening.

Shauna

p.s.--Per Allie's request, I'm including some of Annie's favorite things. She loves purple and pink. Her favorite flowers are definitely roses, but any flower thrills her. Her favorite ice cream flavor is vanilla, with strawberry in a close second place. I read her the messages about her in the guestbook, and she beamed. Thanks for making a big deal of her surgery and keeping her in your prayers. We really appreciate it.

Wednesday, February 2, 2005 5:28 PM CST

Well, I think we have our answer to the "tummyache" issues that Spencer has been having. Jennifer called with his scan results, and he has a hiatal hernia! BUT, the good news is that the scans are CLEAR! SWEET WAHOO! We are so relieved to hear that the cancer remains gone, and we can breathe a little easier for the next few months. Thank you SOO much for your prayers and thoughts. You really lift us up. As for the hernia, Jennifer said that it didn't seem to be too severe, but Dr. Sharp hadn't reviewed the scans yet, so he would be able to tell us if we need to do anything about it (laproscopic surgery is usually the fix for more severe cases). We could not imagine being happier about a hernia! :0)

In other surgery news, the hospital called to review Annie's medical information and to go over preregistration stuff for her tonsilectomy/adenoidectomy next Tuesday, so she's all set up for her hospital sleep over. Other than that, it was a pretty quiet day at the Jones household.

Thanks for praying for Spencer and for stopping by. After such a sad day yesterday, it was a welcome change to hear some good news.

Shauna

Tuesday, February 1, 2005 6:46 PM CST

You know, I don't even know what to say or how to say it. We lost another dear cancer friend today. Garrett passed away last night a little after midnight. He has fought so hard for so long, and I know that the poor little boy was so tired. His dad was with him and he said it was a peaceful passing. I'm so glad that he is no longer in pain and that he can finally be free of the cancer that has plagued his body for the last few years, but I wanted so much for him to be able to do that here on Earth, to beat the odds and kick cancer's butt and go on and live to be a wrinkled old man. He was such a good kid, a truly sweet kid. I had planned on going to visit him today while we were at the hospital, but Wendy Faherty, Jacob's mom, called this morning while we were still in bed. As soon as I heard her voice, I knew what had happened. Spencer, Garrett, and Jacob are the three rhabdomyosarcoma boys in the clinic, and Jacob and Garrett were best friends. It's a sadder world today, without Garrett in it. Please pray for his parents and his brother and sister as they try to cope through this difficult time.

Spencer's scans went fairly smoothly today. Thank you for all of your prayers--they really helped. Joy and Annie came to the hospital with us. Joy helped me get Spencer to drink the contrast stuff, and Annie entertained Spencer while we were waiting for scans. Spencer drank the contrast fluid with only mild protest for most of it, and great protest on the last few ounces, but he DID IT, and within the required hour, too. He was happy to see Jennifer and the fishy room and sat up on one of the tables to get accessed, which was a first, but he did great. He's getting to be such a big boy. He really has lost the toddler look and looks like a little boy now. Then, Joy and Annie waited in the Imaging waiting area while I took Spencer back for his scans. He cried through the whole thing, but he held pretty still, besides the lung movement from crying, so hopefully it will be a good view. Then, we headed back up to the clinic for de-accessing and a little more "Fishy Room" time. Spencer is always SOOOO mad to leave that place. He cried all the way out to the car and then promptly fell asleep for most of the ride home. The whole thing went faster than anticipated, and we were out of there before 2:00 this afternoon.

So, now we wait. This is the worst part for me. I'm hoping to hear tomorrow, but sometimes it's two days of waiting before we know anything. I'll let you all know as soon as I do.

Mike is doing well in Chicago, but wishes he were home. We do, too. I'm feeling really emotionally drained today. Jacob has his scans on Friday. Please keep him in your prayers as he approaches them and deals with the death of his best friend at the same time. Thanks for stopping by. We really, really appreciate your support and all of the comments in the guestbook. You are such a great support to us. Thank you.

Shauna

Monday, January 31, 2005 3:30 PM CST

Spencer's scans are tomorrow at 2:30pm, so we need to be there by 11:15am. They are really hoping to do it without anesthesia so they can get a better pelvic scan. Apparently, the anesthesia really slows things down and so the contrast doesn't spread well to the pelvic area. The girls will stay with a friend. Mike is usually the "Contrast fluid Nazi", and is really good at getting Spencer to get it all down, so wish me luck tomorrow going solo. We will be praying that he holds still for the scans and that everything goes smoothly without Dad.

Shauna

Sunday, January 30, 2005 7:26 PM CST

Allie came to play this afternoon/evening with Spencer and the girls. Right now they are hopping like frogs around the living room...and the dining room...and down the hall. I'm always amazed at how much energy Allie has to give to playing with the kids. They were all so excited that she was coming. I can never tell them very far ahead of time, because from the moment the words come out of my mouth that Allie is coming over, there is a never-ending stream of "When is Allie going to get here?!? I want ALLIE!" And when she rings the door bell, it's screams of "ALLIE'S HERE!! ALLIE'S HERE!!" She's quite the celebrity around here.

Mike spoke in church today. He spoke on preparing temporally. The kids were all very excited to see Dad stand up and start talking. Sophie was yelling, "Daddy! Daddy! I love you Daddy!" And Spencer kept saying, "I go help Dad!" It was all I could do to keep them on the bench and somewhat quiet through the meeting. Mike did a really good job on his talk and got lots of nice comments afterwards.

Yesterday we got a piece of mail that literally reduced me to tears. We got a statement from Blue Cross/Blue Shield saying that they were covering Spencer's hospital room from his surgery back in April. I have been fighting the private room charges from his stay for 9 months straight, and I was beginning to think it would never get resolved. Luckily(?), Spencer's diagnosis qualifies him for private room coverage with BC/BS. I am SO relieved to have that resolved! Now, if we could just get them to cover the topotecan treatments, life would be just about blissful, I think.

Well, Allie is gearing up to go, so the tears are already starting to flow from the kids. For all the joy and celebration that happens when she comes, there's an equal amount of weeping and wailing and drama when she leaves. I had better go see what I can do to ease their pain. Mike is packing and heads out early in the morning for Chicago. I need to call Raquel about scans in the morning, too.

Thanks for visiting.

Shauna

Saturday, January 29, 2005 8:33 AM CST

**New Photos**

I can hear Spencer in the kitchen singing, "C is for Cookie, and cookie is for me." Only, it sounds more like, "T is for Tootie, and tootie is for me." He just picked up singing recently, and it's so fun to hear him do it. He used to really dislike music and singing, but now, I hear him singing "The Eensy Weensy Spider" on almost a daily basis. And he takes that tune and changes up the lyrics to things like, "The Big Stomping Chomper" and "The great big Daddy Sharptooth." I love it.

Well, yesterday turned out to be a pretty eventful day. In the morning, the kids and I (Shauna) went across the street to Joy's house for a play date with Joy and Daniel and a few other moms and their children. It was fun.

Then, at 11:00, I took Annie to the pediatrician, which turned into a trip to the ENT, which turned into scheduling surgery at the Children's Hospital for February 8th to get her tonsils/adenoids out. And, turns out, Mike will STILL be in Chicago, so we'll have to do that without him, too. She has huge tonsils and has always had snoring problems, but also has developed sleep apnea, which makes for a very restless night and a constantly tired Annie. It will be an overnight stay at Children's hospital, and I've been talking it up to Annie so that she is pretty excited about the whole thing. She thinks it will be great to eat icecream and pudding and yogurt and applesauce to her heart's content. Plus, she's also kind of excited that it's HER turn to have a sleep over at the hospital. (?!) I was asking the doctor where she would be for recovery--on the third floor of Children's or the 4th floor of Brackenridge. He asked me if I was a medical professional. (sigh) Unfortunately not. Just a parent who knows WAY more about the ins and outs of that hospital than I ever hoped to.

Our colds are taking their toll on us. Spencer and Sophie are still stuffy and coughing and cranky. Spencer's cough sounds the worst, though, and I keep thinking that Sophie's improving, but she just hasn't licked it yet. Mine seems to be getting worse. It's frustrating. I always seem to get sick right before Mike leaves town. Maybe it's psychosomatic? I'm having a hard time keeping up on my running schedule, too, through it. Running is really hard when you can't breathe. I hope we all beat this soon.

I still haven't heard word on when Spencer's scans are. I'll call Monday morning to talk to Raquel about it. I'll let you all know as soon as I do.

Shauna

Thursday, January 27, 2005 10:03 AM CST

UPDATE: I have a big favor to ask of all of you in the Round Rock/Austin area. The Blood and Tissues Center just called and said that they are really low on blood right now and are desperately looking for donors. If any of you can, PLEASE donate as soon as possible--this week would be best. Spencer received blood every three weeks like clock work all last year, and we know so many more children here who do the same. Please donate if you can, it's a life-saving thing to do. The address and phone number for the blood center in Round Rock is:

2132 North Mays, Suite 900
Round Rock, TX 78664
512-233-LIFE

**Yet more pictures added**

Jennifer called this morning. Dr. Sharp also thinks that it would be better to see Dr. Cortez, the pediatric urologist, than to go to a nephrologist, so he is going to talk to Dr. Cortez and they will get back with us. He also suggested that we record Spencer's drinking input and output for the next few days. That's tricky, because he sneaks drinks from sippy cups all day, and the kids are not very good about drinking only from their own cup. We'll also need a scale to weigh his diapers, since he's not yet potty trained. (sigh) We'll give it a go, though. Also, Raquel is supposed to call later today with Spencer's scan scheduling. They will do scans next week, which is good because it will be done and over with, and which is bad because Mike will be in Chicago for work all next week, so I'll be on my own. Oh well.

In other news, Mike and I both woke up this morning with the kids' colds. And Spencer and Sophie are still not better. Their heads seem to be a little clearer, but their lungs are still congested and their coughs sound terrible. We've been through a whole bottle of Sudafed with them, so we need to do a run to the grocery store to stock up again. And although Spencer is REALLY good about taking any kind of medicine we give him, Sophie is a stinker about it and we have to force every drop down her throat, which makes for a messy ordeal. Here's hoping it all passes soon...

Oh, and we narrowly escaped a trip to the ER last night. We had salmon fillets for dinner. Fillets that were SUPPOSED to be boneless. Aparently, the only bone in the fish happened to be in Annie's piece and got lodged in her throat. She was screaming and we were trying to help her cough it back up or swallow it back down with little success. I was just gearing up for the ER trip when Mike convinced her to try a drink of water, which did the trick and ended the drama. Now, she's worried that there's a bone in her tummy that won't ever come out, but I keep assuring her she'll be fine. Never a dull moment, eh?

Well, I'd better get going. Thanks for visiting. We can use your prayers next week as Mike travels. I always hate when he's gone, but this will be especially difficult to go through scans without him. Please pray that Spencer will drink the contrast fluid and hold still for the scans so that we can do them without anesthesia and that everything will go smoothly. We really appreciate your support and love.

Shauna

Tuesday, January 25, 2005 1:55 PM CST

**I added an article that Mike's mom sent to us at the bottom of today's entry. It's a description of Give Kids the World by a theme park review writer named Deborah Davis. It pretty much sums up Give Kids the World to a tee.**


**New Photos Added**

Mike talked to Jennifer today. We are not convinced that the nephrologist is the best way to go on taking care of Spencer's excessive thirst issues (which have been a little less excessive lately). She is going to talk to Dr. Sharp. She's also going to find out when we can schedule scans. Spencer is waking up in the night now screaming and crying like he's in pain. Mike said he went in to him last night and he was sitting up in his bed, crying. Mike got him settled down and then stood in the doorway watching him sleep, and Spencer was really restless, like he was in discomfort, for a few minutes and then finally sat up again, crying. Something is just not right. I wonder if it's psychological--night terrors or something. He seems to be okay during the day, it's just when he sleeps that he has the biggest problems. I don't know, but we need to find out what it is so that we can address it properly.

I finished my 20 mile run yesterday, and it went well, all things considered. I started running it on our treadmill at home, until it overheated at 8 miles, then I finished the last 12 just running loops in our neighborhood. It's not very entertaining to run 20 miles by yourself--I miss training with Joy, but as far as endurance, strength and recovery, I felt good and it felt less taxing than my last long run, so I'm looking forward to finishing out the next few weeks of training and doing the marathon.

Spencer's cough sounds terrible today, and Sophie's is not really improving much, either. They both have a lot of head and chest congestion. Both of their fevers are gone, though, and Sophie's activity level is up some. Spencer is mostly lying on the floor with his blanket, watching movies or just resting. Hopefully it will pass soon and won't spread to any of the rest of the family.

Thanks for visiting.

Shauna

This trip report is a little different than most, considering I didn’t visit a theme park. I did, however, visit an Orlando-based resort that is so exclusive, it’s barely known outside of certain circles. Within those circles, the place is considered “the bomb“. It’s called Give Kids the World, and anyone who thinks Disney is magical should see this place. Beautiful villas, a carousel, unlimited ice cream, mini-golf, an arcade…all free (in terms of dollars at least). So what’s the catch? They cater only to children with life-threatening illnesses and their families. Although I’ve stayed at many beautifully themed Orlando resorts (and Pop Century), I‘ve never experienced anything like this. (Oh, and we went to Downtown Disney, too.)

Our adventure started in December, 2003, when my eight-year-old son “Patrick” brought an assignment home from school to “make the world a better place”. One of Patrick’s kindergarten friends died from leukemia in 2001, two weeks after our neighbor’s 12-year-old daughter was also diagnosed. In their honor we wanted to do something to help, but what? A little web surfing led me to GKTW . A quick call to them told us that they were in need of 35mm film. In many cases, time is short and arrangements are made with as little as 24-hours notice. Things like film are often forgotten in the rush to get there. We now had our mission.

Suddenly, I was seeing GKTW everywhere. Commercials I had never noticed before (one with Natalie Merchant singing “These are Days”), magazine articles, etc. I learned the resort was founded by Henri Landwirth, a holocaust survivor and hotel owner who started building the resort in 1989. Working with more than 300 wish granting charities, the 51-acre resort has hosted over 60,000 families from all 50 states and 50 foreign countries. (Did you know that 1 in 4 “wish trips” are to the Orlando area?) It sure sounded cool, but we had to see for ourselves. Our 10-year-old friend “Josh” joined the project, and the boys collected over 300 rolls of film and single-use cameras. Finally, the day came to deliver.

On April 6, 2004, Patrick, Josh and I started off at 8AM from my house in Largo. (That’s in Pinellas county, the little hangy-downy piece on the west coast of Florida.) Surprisingly, we breezed through Tampa traffic and things went well on I-4 until just outside Baseball City. That’s where we hit gridlock that set us back an hour. We arrived at GKTW at 11AM on the dot.

Now, some of you may be wondering, “Just how depressing is this trip going to be?” I understand, I worried about that myself. Let me assure you, it wasn’t like that at all. As a matter of fact, I’ve never seen a place where everyone was enjoying themselves so much. The staff (60 paid employees) and volunteers (there are 3500 in their database) were warm and friendly, and not in a “freaky, Stepford-like Disney store employee” way, either. They are the real deal, very genuine. Everyone we saw at the resort smiled and said “Hello”. It’s just that kind of place. I won’t say that there weren’t times when I felt a little lump in my throat, but it was mostly upbeat.

The Tour…

After checking in at the security gate, we were directed to the House of Hearts Welcome Center. This is where guests check in and are assigned a guide to show them around. It looked similar to the lobbies at other family-friendly resorts, with a TV in one corner (showing “Shrek”) and various play tables. There was an “Easter egg” tree decorated in the corner and several kids just hanging out. We turned in the film and were then greeted by our guide “Elissa”. The tour was on…

Amberville Train Station
Adorned on the outside by giraffes, a tin soldier and a lion, the train station is the home to the GKTW arcade. On the day we visited, the pool table was being recovered , so some of the games were closed off. I did notice a nice collection of old & newer games including Pac man, skeeball and one of those ride-on motorcycle games. The model train display is set up in another room (the biggest I’ve ever seen). It’s all interactive and as a tribute to Central Florida weather, a rain storm hits every afternoon, dropping mist on the train village. Pretty cool, huh? There’s a nautical-themed room that houses the controls for the remote controlled boats outside and a small ride-on train circling the building.

Marc’s Dino-putt Mini Golf
Next, we hit the golf course. Named for one of their former guests and child ambassadors, the 7-hole mini-golf has a dinosaur theme and does something special at each hole. From dilophosaur spit to the mist cave, it’s definitely cute, well-themed and fun.

Family Villas
Now it was time to check out the digs. There are 96 units at the resort, all set up like duplexes. Each has two bedrooms, two baths and a kitchenette. There is a whirlpool tub, a wheelchair accessible shower, a fridge stocked with snacks and a washer and dryer in every unit. It will sleep seven comfortably, but if a family has more members, they will get both sides of the duplex and open an adjoining door. Whatever it takes to make them comfortable.

Mandy’s Happy Harbor Friend Ship
Located toward the back of the resort, the ship is a permanent fixture on the stocked lake and serves as a place to relax and do a little fishing. The lake is also home to the world’s friendliest ducks, which came running to us the minute they saw us. Elissa claims that the ducks are so friendly, they have been known to sit on people’s laps. I would have liked to seen that.

Claytonburg Park of Dreams
Moving on, we stopped at the main pool and water park. I know from personal experience that the pool is the most important part of any resort, and this one truly shines. With a wheelchair ramp running INTO the pool along one side, all kids have the opportunity to enjoy it. There’s a water playground (which is turned off when not in use to conserve water) and an amphitheater which hosts a pool party every Monday evening. There is also a smaller pool nestled in the middle of the villas for those looking for a little peace and quiet.

Gingerbread House
This is the dining hall, which provides breakfast and dinner each day. Breakfast is a buffet offering typical morning fare, but the dinner menu theme changes day to day. All food is provided by Perkins restaurant, one of the major contributors to the resort. The tables and chairs are all kid-sized and the inside is decorated with the favorite dolls and toys of past guests which, according to Elissa, are sent by the parents “afterward“. (Lump in throat moment.) Elissa also pointed out that they recently added a new dining room to the gingerbread house in the form of… a cupcake, what else?

Castle of Miracles
Once the dining room and theater, this building is now a play area with massive amounts of Legos, puppets and toys. There is a wheelchair accessible carousel (under a mushroom cap roof), Ol’ Elmer the animatronic tree, and a magical wishing well. Each “wish” kid gets to personalize a star, which is mounted on the ceiling by “fairies” later that night. According to Elissa, this is the only time that the “wish” kid is singled out from their siblings. She also said that parents have come back “afterward” (that horrid A-word again) just to search the “sky” for their child’s star.

Ice Cream Palace
Now we hit the place the boys had been looking forward to most of all! With it’s bananas, cones and ice cream bowl booths, the theme on the outside of this building certainly conveys what’s going on inside. Unlimited, free, all you can eat ICE CREAM!!! Serving Friendly’s brand ice cream (a division of Perkins), anything is available here. Sundaes, floats, banana splits, you name it, you got it. They also have submarine sandwiches for those wanting a meal. (Usually, the guests have lunch in the theme parks, but just in case they stay back, lunch is provided here.) For quality control purposes, Elissa insisted the boys try something, so Josh had a vanilla milkshake with whipped cream and a cherry and Patrick had a cup of chocolate ice cream (he’s a purist, no cone, no toppings).

Julie’s Safari Theater
The theater was our next stop, but it’s is only open at night, so we couldn’t go in. Elissa told us that they show cartoons and classic family movies, as well as important sporting events, like the Super Bowl. It seats 100 people, with special accommodations for those that need it, and offers movie theater-type snacks.

Chapel
The final stop was the chapel. Although “fun is a full-time endeavor” at GKTW, sometimes family members need a quiet place for solitude and reflection. The non-denominational chapel is just the place. There are four stained glass windows, each depicting a season and emblazoned with one of four words that mean everything to the families that visit: faith, hope, love and peace. The resort also has connections with area churches so that if a guest feels the need to speak with a member of their faith, it can be done at any time, regardless of their religious belief.

We ended the tour back at the House of Hearts. At this point, Elissa cut us loose to walk around and enjoy the facility. The boys hit the arcade first, but spent more time driving the boats than anything else. We walked through the golf course, pushing all the buttons to see what would happen. (We also met some really nice young men who were spending their spring break volunteering here.) After snapping some pictures, we left . We were at GKTW for less than 2 hours, but looking back, it seemed so much longer (in a good way). I can only image how awesome 6 days would be.

Just a few other things that I would like you to know about a trip to Give Kids the World: the transportation is arranged through the wish-granting charities, which pays for airline tickets and rental cars. Disney provides 3-day passes for all family members, Universal and Sea World each give a 1-day pass. The staff and volunteers are dedicated to doing everything they can to see that every want, wish, or need is met.

Downtown Disney
Lunch at The Rainforest Café, a short visit to the toy store, and an hour outside the Lego Store watching kids beg, borrow and steal to get their hands on Lego wheels. After spending the morning at GKTW, nothing here seemed too impressive. Besides, this report is long enough. (I did have to smirk a little, though, when I saw the parents lining up to pay $2 a pop for their kids to ride the mini-train and carousel.)

Monday, January 24, 2005 10:01 AM CST

*More GKTW pictures in the photo album*

We had a really fun weekend. My (Shauna's) cousin, Bob, came into town for the weekend from Denver, and we thoroughly enjoyed his company while he was here. We played games and visited and had a great time. On Saturday night, Joy threw a big 30th birthday party for me, and about 20 of my friends showed up for food and games. It was really nice.

The not-so-fun aspect of the weekend is that Sophie got a nasty head cold with a fever and cough, which Spencer picked up yesterday, so the kids haven't been sleeping or feeling well at all for the last few days. Sophie seems to be improving, though, so I'm hoping that Spencer's bout with it will be short lived as well.

Today I'm going to attempt my last long training run before the marathon. With three weeks to go, I'm starting to get nervous, but I think I'll feel a whole lot better after I get this 20 mile run under my belt today. Wish me luck.

Garrett is struggling with infection again, and I know that his family would appreciate prayers on his behalf. He has really struggled through the last few weeks, and they are hoping to pull through this, too.

Thanks for stopping by.

Shauna

Friday, January 21, 2005 11:22 AM CST

So, we got a referral for Dr. Cortez, the pediatric urologist who assisted on Spencer's tumor removal surgery in April. I (Shauna) called and talked to his nurse, and she talked to Dr. Cortez about Spencer's symptoms. He thinks Spencer should see a nephrologist (kidney specialist), so today I'm calling the pediatrician's office for another referral for that. Hopefully we can get something set up for early next week.

Annie was pretty disappointed to wake up yesterday morning to find that her cocoon scheme hadn't worked out like she'd hoped. Still, she was pretty sure that she just needed more time and she'd be a butterfly yet. She was settling in for the next few days when Mike decided to intervene and talked to her about how we need to use our muscles every day to keep them healthy and strong. He finally convinced her that she really didn't want to just lie in bed for the next week waiting to sprout wings. What that girl won't think of next.

Spencer's speech continues to improve and amaze all of us with the rate at which it's increasing. At the clinic appointment before last, Dr. Sharp was asking him about his tummy. He asked him if it hurt to pee. Spencer said, "No, it hurts to poop!" Dr. Sharp said, "It sometimes hurts to poop?" Spencer replied, very matter-of-factly, "Yes! And Mom poops!" Dr. Sharp looked at me, as I turned a few shades of red, before he turned back to Spencer and said, "Your mom poops, too?" Spencer smiled. "Yes! Mom poops! On the potty!" I had to keep reminding myself that it's a GOOD thing that he's improving his speaking skills. :0)

Yesterday was a fun day for the fact that I actually combed Spencer's hair! It's been a year since he's had hair, so it was quite the treat, and he was very good about letting me do it. Granted, it's only 1/4 inch long or so, but I was so excited, I sat him down for a bunch of pictures outside. That's where the front photo came from. While we were in Florida, something clicked with him and he now likes getting his picture taken and smiles and poses for me. It's so fun.

Speaking of photos, I put a few more new ones from Give Kids the World. Spencer keeps begging to go on the carousel. He doesn't really get that it's not just around the corner anymore.

Well, I'm off to do laundry. Thanks for checking on us and for keeping Spencer in your thoughts and prayers.

Shauna

Wednesday, January 19, 2005 7:22 PM CST

Hello all. Mike here. Shauna is getting on my case again for "not pulling my weight" with regards to this journal, so here I am. :) We have good news to report tonight -- Spencer's labs all came back normal, so we can rule out diabetes as the cause for his extra-thristiness. Dr. Sharp also ordered an ultra-sound done, but since Spencer was fasting (for the labs), the pictures of his pelvis didn't turn out too well. So we'll probably be going in for a CT scan soon. Dr. Sharp also suggested that we go see a urologist, too, so we'll probably be doing that next week.

Spencer was very excited to see Jennifer, and I daresay, she didn't mind seeing him either. They are pretty cute together. They did all the usual activities: read a dinosaur book, played with dinosaurs, watched a dinosaur movie, (are you noticing a theme here?), etc, etc. He was very good while getting his port accessed, and also while Dr. Sharp was examining him -- such a remarkable change from last year at this time. Everyone at the clinic commented on how fast his hair is coming in and how much his speech has improved since he was last there.

We're very relieved to not have to worry about diabetes, obviously, but are now wondering "if not that, then what it is it?" Dr. Sharp said that there could be some irritation in his bladder area (scar tissue, etc) that is causing him to urinate more frequently, or that there is some psycological reason that he wants to drink more. The other possibility is that there is some new tumor growing down there, but we don't want to even think about that. Personally, I really don't think it's a new tumor ("It's NOT a tumor!").

In other news, Shauna and I have been playing in a co-ed indoor soccer league and our team ended up with first place for the season. Monday night was our last game against the second place team, and it was a great game. We started off slowly, and we were down 6-2 at the end of the first period. But we came back to tie at 8-8, which sent us into overtime. We won 10-8. Pretty exciting, eh? We're not the stars of the team, by any stretch of the imagination -- I hadn't played soccer since elementary school, and Shauna's only prior experience is a beginning soccer class in college -- but still, it's been fun to play, and winning isn't too bad either.

I have a funny story about Annie to tell before I wrap up. We had a conversation over dinner tonight that went like this:

Annie: "Dad, I think I'd like to be in a cocoon."
Me: "Like a butterfly cocoon?"
Annie: "Yeah, but I don't know what to use. Maybe a bunch of papers taped up, so that I could break out of it."
Me: "Or maybe a blanket?"
Annie: "mmmMMMmmm... good idea. Yeah, I think a blanket. Then I can break out in a few days and then I can fly-y-y around the house."
Me: (chuckling a little) "Yes, but just for pretend, right?"
Annie: (suddenly serious) "No."
Me: (trying REALLY hard to keep a straight face) "Well, I think you have to be a caterpillar to change into a butterfly. I don't think people can do it. But it's OK to play pretend, right?"
Annie: (undeterred) "Well, I think I just want to TRY it."

And so, right now, she is up on her bed, wrapped up tight in her blanket, hoping against hope that her stick-in-the-mud dad is wrong and that she'll emerge in a few days with big butterfly wings on her back. What a cutie!

OK, that's it for tonight. I think Shauna put up some more pictures from our trip, so feel free to check them out if you like. Thanks for checking in on us and thanks for your thoughts and prayers over the last few days. We'll keep the journal up-to-date with news about his scans when we find out more.

-Mike

Monday, January 17, 2005 4:57 PM CST

HAPPY MARTIN LUTHER KING, JR. DAY!!! That holiday totally snuck up on me today! I got up early to go to the Rec Center with Joy to run on the treadmills there--it's our new answer to working out together, because I'm still running for training, and she's still on Dr.'s orders to not run, so we get side by side treadmills and she walks and I run and we can still chat while we workout. However, we got there only to find that the Rec Center was not open early in the morning in celebration of Marthin Luther King, Jr. Day. So, you'd think I would have learned my lesson, right? But, NOOOOO. I totally forgot and decided later in the day to run to the Post Office to mail my pre-Christmas packages that are way over due in mailing, only to figure out in the parking lot that it was closed for Martin Luther King, Jr. Day! So, HAPPY HOLIDAY! I won't be forgetting that one again any time soon! :0)

Okay, more new pictures in the photo album. These are some more of our stay at Give Kids the World.

We had a fun day today (if you don't count my two MLK Jr. faux pas, that is). My neighbor Joy and I took the kids to Barnes and Noble and they played with the train set and the stuffed animals. Spencer found lots of dinosaur books for me to read to him. He's getting pretty good at picking out the Iguanadons and Raptors from pictures. It's amazing to me. Joy's oldest, Kenneth, and Annie picked out a balloon artist kit each to go home and learn the art of balloon sculpture. And Spencer picked out a little stuffed raccoon that he loved to bring home with him. While the littlest kids napped, Annie and Kenneth and Joy and I made fun stuff out of balloons, and then I snuck out for my daily run while they continued to make swans, flowers, and other fun stuff from balloons. The kids all had a good time and now Spencer and Annie are taking naps so that they can stay up late tonight to go to our rec league soccer game. Should be fun.

We are going in on Wednesday morning to the clinic. Spencer's thirst hasn't subsided, and he is complaining off and on of a tummy ache. His stools have also been really loose lately, which was how they were all the time before he was diagnosed. He'll go in at 10:00am and Dr. Sharp will talk to us about his symptoms. He may order some kind of diabetes test, and he may order scans, so Jennifer said it would be best to come in fasting. It's scary to me, but I'm hoping I'm just being an over-paranoid mom and that it really is just nothing. We'll let you all know what we find out. I just have to not think about it for the next few days. . .

Thanks for stopping by. Please keep Spencer in your prayers this week as we try to figure out what's going on with him.

Shauna

Sunday, January 16, 2005 9:54 PM CST

We are all still tired and recovering from vacation today. Church was hard for Spencer. He is having a difficult adjustment moving from the nursery into Primary. The children move out of nursery at the beginning of the year after they turn 3, and since Spencer's birthday is the end of the year, he is just about the youngest kid in Primary. Not to mention the fact that he didn't get to go to church more than a handful of times during the entire last year. I (Shauna) sat in with him for a while, and then Mike traded me, and he finally ended up in Relief Society (women's class) for the final hour, passed out on my lap from exhaustion and crying. Poor kid. We need to figure something out so it's not so traumatic for him. I need to talk to the Primary and Nursery leaders this week, I think.

Allie came around 1:00 and the kids had a ball playing with her all afternoon. Spencer gave her a big hug when she arrived, and Sophie was crawling down the stairs towards her yelling, "ALLIE! ALLIE!" Part way through playing, I heard Annie say, "We haven't seen you in a REALLY long time! 'Cause we were in Disney World!" They sure love Allie. We all love Allie. I'm so amazed that a young woman would willingly spend her weekend playing with a 5, 3, and 1 year old, but we are so glad that she does. Spencer really loves her--all of the kids do. We are blessed to have her in our lives. She is one of our all-time favorite people.

Well, we're beat. The kids are in bed, and I'm headed there shortly. Thanks for checking in on us. I'll put some new vacation pictures up before I go. These are of Garrett's, Ian's, and Spencer's stars hanging in the Castle of Miracles at Give Kids the World. We hunted for Jacob's, but never found it. There are a LOT of stars.

Shauna

Saturday, January 15, 2005 1:58 PM CST

OKAY, three of about 200 vacation photos are in the photo album for your viewing enjoyment! These are all of the Village at Give Kids the World.

WARNING: HUGE entry. Y'all might want to go get a cup of hot chocolate/cider and a donut and curl up in a blanket before settling in for the afternoon with this entry. Don't say I didn't warn you. Oh, and pictures will be following close behind--as soon as I unpack enough to find the camera. . .

Shauna here. We're HOME! And just a day later than expected. That's a long and sordid tale in and of itself, but I'll get to it later. First of all, we had an AMAZING time at Give Kids the World Village (aka GKTW/aka "the Village"). I am telling you what, those people know how to throw a party--and spoil kids! Every night they had something really fun going on in the Castle of Miracles. There was a balloon artist, and candy artist, and Santa and Mrs. Claus to name just a few. The weather was gorgeous the whole time, and we had lots of fun swimming in the outdoor pool there, eating icecream at all times of day and night, riding the train, playing on the dinosaur miniature putt golf course, taking horse drawn carriage rides, and most especially riding on the carousel at the Castle. Spencer rode just about every horse, pig, chicken, and deer on the carousel, I think. And the volunteers were more than happy to let him keep going and going and going and. . .well, you get the picture. It was so much fun. We could have happily spent the whole week just inside the Village and been great--but on top of that, we did a ton of other fun stuff.

We went to the ocean on Sunday (Cocoa Beach) and the kids had a ball standing on the shore letting the waves crash into them and building sand castles. Annie found lots of pretty sea shells, and thought it was just about the coolest place ever! That is, until we went to Animal Kingdom on Monday, and Sea World on Tuesday, and Magic Kingdom on Wednesday. . .and then she had a hard time deciding which of them was the coolest place ever.

Annie is quite the roller coaster lover, much to our surprise. She and Mike went on Splash Mountain, Big Thunder Mountain, and Space Mountain several times each, and she was still crying that she hadn't had enough roller coasters when we left on Friday afternoon. Spencer was JUST tall enough to ride Splash Mountain, and he was really excited to be going on it with Mom and Annie, until we hit the first drop, then he was pretty sure he HATED Splash Mountain, and the big drop at the end about did him in. But, he recovered quickly and decided he wanted to go on it again on Friday--until we hit the first drop and then he remembered that he was certainly sure he HATED Splash Mountain and after the big drop, he was screaming, "I DON'T LIKE THE BOAT! IT'S A SCARY BOAT!" So, we didn't even try the other "Mountain" rides, and he was just fine with that. He did love the Buzz Lightyear Ride (we thought of our little angel friend Ian the whole time--he loved it, too). He also loved the Kilamanjaro Safari at Animal Kingdom, the dolphins and "scary sharks" at Sea World, the Tea Cups ride, and the triceratops spin ride in Dino-Land in Animal Kingdom. I think his favorite aspect of the whole trip, though, had to be the "brown ice cream" all day every day, whenever he had a hankerin'.

Wednesday night, we saw the fireworks show at the Magic Kingdom, entitled "Wishes." What a perfect theme for our visit! It was an amazing show of fireworks, and the kids loved it. We were all worn out on Thursday, so we spent the day at the Village and swam and ate icecream. All of the kids loved swimming. Annie learned to swim with her face in the water (which is more than her mom can do, I might add) and even Spencer and Sophie got good at kicking and sticking their faces in the water. One of Spencer's favorite attractions at GKTW was a little boat that had Bear from "Bear in the Big Blue House" sitting in the seat next to him, and when you push the button to start it, the boat rocks and Bear talks to you about the fish jumping and the ducks quacking. Spencer thought it was pretty much the best ride ever, and did it over and over again, every time we passed by it.

The entire week was amazing. We wore ourselves out every day having fun, and then we'd come back to the Village and have more fun. The week really could not have been more perfect--it was packed with good times for all of us, that is, until yesterday. It was January 14th, and the one year anniversary of Spencer's cancer diagnosis. That should have been our first clue, I guess. We woke up to torrential rainfall. But, we were determined to have fun on our last day anyway, so Mike ran to Walmart and got us all bright yellow Disney ponchos and we headed out for one last day at Magic Kingdom. I got to see one of my dearest college friends, Kathryn, who lives in Jacksonville, and who was in Orlando with her husband and new baby this week. She drove to the Village and we had a short visit--I got to meet her baby and we got to catch up on each other's lives. It was awesome. Then we piled in the car and drove to Disneyworld. Everything was soggy, but we had fun anyway, going on a few last rides and watching another viewing of "Mickey's Philharmagic Orchestra," a 3-D movie that Annie is convinced is real magic because when she wore her magic glasses, the stuff came out of the movie at her and she got wet from the water and everything! She is, quite frankly, a little perturbed that the magic glasses only work in the Magic Kingdom, 'cause she really wanted to bring them home and have them work on the TV at home. :0) So, we had another fun day at Disney, but, at last it was time to head to the airport. That's when the day really started going downhill. We got out to our car and hit bad traffic and discourteous drivers all the way to the airport, only to find that our flight was delayed and we would be missing our connection in Dallas. So, we ended up in Dallas at midnight, waiting outside in the cold for our hotel shuttle, all of the kids tired and trying to sleep on our shoulders, as everyone standing around us lit up their cigarettes (I just want to yell at people like that--"My child already HAS cancer. He certainly doesn't need YOUR HELP!") Anyway, we got to the hotel and they gave us the key to our room, which ended up not having the right sized beds, but we didn't have the energy to carry all of our kids and luggage back down to the front desk, so we were all crammed together for the night, then had to wake the kids up early in the morning to get BACK to the airport, where Mike and Spencer BOTH got searched at security. It totally freaked Spencer out and Mike and I were both fuming by the time we got through to our gate. BUT, we are finally home safe and sound and although we kind of ended on a sour note, the sweetness of the whole trip certainly outweighs the last 24 hours and we are so glad that we got to go. We've just decided that the next January 14th that rolls around, we'll all be hiding under our covers in bed for the day! :0)

Really, though, as Spencer was jumping and running hyperly around the airport, driving us all crazy, I couldn't help but think about what a grateful change it was from last year at this time, when he was lying so sick and pale and still on a hospital bed, and we were wondering if we'd ever see this day of cancer-free hyperactivity. We are really so blessed. Spencer got his name on a star that is now hanging on the ceiling in the Castle of Miracles along with Ian's, Garrett's, Jacob's, and the stars of literally thousands of other children who have been blessed by their stays at the Give Kids the World. It's really been a humbling week for us to be on the receiving end of so much kindness and special treatment at every turn. We didn't have to stand in lines for the rides or to meet the characters, we got front seats at every show, Annie got to get up and dance and be part of the "Festival of the Lion King" at Animal Kingdom, and people just bent over backwards everywhere we went to make us feel special and ensure that we had a dream vacation. And we did. What an incredible opportunity--a truly once in a lifetime experience. We are so thankful for the happy memories at the end of such a difficult and trying year. Just amazing! We are so blessed!

Oh, and I just have to add a quick story before I go. Thursday morning, Spencer woke up saying, "I wanna go Fishy Room. I want Jennifer!" I said, "Spencer, don't you want to go see Mickey Mouse again instead?" He replied, "NO! I don't want Mickey Mouse! I want Jennifer!" I laughed. It just speaks volumes on how much love he has felt this year from his nurse and how incredible it is that he could go through almost of year of chemotherapy and still think of the fishy room and visiting his nurse on par with a Disney World vacation. We will be forever grateful to Jennifer, Dr. Sharp, and the Child Life Specialists and volunteers for making him feel that way. Of course, he was quckly appeased by a trip to the swimming pool, but I still thought it was pretty cute.

Well, if you're still reading this--CONGRATULATIONS! It's huge, I know, but what can I say? I was an English major in college and old habits die hard! Thanks for thinking of us while we were gone and for signing the guestbook. Thanks for keeping us in your thoughts and prayers. We are thankful for all of you!

Shauna

Friday, January 7, 2005 8:01 PM CST

I (Shauna) took Sophie in to the doctor today. She's been clingy and fussy and saying, "owie, owie, owie" all day and all night long for the past few days, and I wanted to check and make sure her ears were not infected before we got on the plane. They were fine, and it stumped her pediatrician as to her complaints of pain. Her best guess was teething, but it seems a little more than that. We'll just watch her and hope she feels better soon.

Spencer tonight said, "My tummy hurts." He's never said that before--EVER, and it makes us nervous. I hope he just has a tummy ache. He's been really thirsty again today, too. I don't know what to make of it all. Anyway, the kids are all so excited for tomorrow. They are sleeping in their Make-a-Wish shirts so that they just have to get up and go at 5:00 am when we head to the airport. Our flight leaves at 7:00 and we get in to Orlando just before 1:00 in the afternoon. Very exciting.

Well, I'm not yet done packing, so I'd better go. Thanks for stopping by and for all of your well wishes in the guestbook. We appreciate your thoughts and prayers.

Shauna

Thursday, January 6, 2005 7:29 AM CST

UPDATE: Spencer's blood glucose levels are normal! They were 76 and normal is 70-115. So, we'll watch him and if his symptoms get worse, we'll take him in again. If not, we'll go back in a month.

New Photos Added

Spencer had another rough (and very thirsty) night, night before last (well, last night, too, for that matter). I called Jennifer and we went in for an afternoon appointment yesterday. Spencer was an angel as far as allowing things to happen--he didn't fuss for blood pressure, temperature, weight/height, ears, stethoscope, or belly feeling. He also sat up in the "big boy chair" all by himself for Jennifer to access him and only fussed a little. Dr. Sharp said he didn't feel anything in his abdomen, which is good. Spencer's CBC looked great, too. His whites are still above 7, his hemoglobin was almost 12, and his platelets were over 150. Now, we are waiting for the CMP, which will be a more comprehensive blood check. Dr. Sharp said it may be diabetes--some of his chemo drugs can cause it, or it may be just nothing. We're obviously pulling for the latter. We should find out sometime this morning, and I'll let you all know what we find out.

Spencer's little friend, Abby, was at the clinic with her big brother, Blake. Spencer calls Abby "white baby," because the first time he met her, she was dressed all in white, from the white bow in her hair and her cute white dress down to her little white shoes and socks. It's pretty cute, and they had a lot of fun giggling and playing together today.

We also saw Garrett's mom, Colleen, in the clinic. Garrett went in with a blood clot on his brain on Tuesday, and Colleen said that doctors said he may not make it through the day. The kids and I went up to visit Garrett after Spencer's appointment. Well, Spencer is totally traumatized by the green unit, and started screaming, "I DON'T WANNA BED! I DON'T WANNA BED!" as soon as we neared the nurses station. I couldn't convince him that we weren't there for him, so our visit was short lived, but Garrett was doing better, and the clot was not in the location they originally thought, and he should be able to return home today on blood thinner. Joy and I went back last night to visit again without kids for a few minutes, and Garrett was sleeping for most of it, but woke up at the end for a minute to visit. Please keep him in your prayers. The whole family could use them.

Today I'm going to pack for Disneyworld, barring any unforeseen trips to the doctor. We are looking forward to the fun there, and to escaping the cold front that just hit Austin hard. Yesterday morning when I went out to run, it was 70 degrees. This morning, at the same time, it's 32! YIKES!

Shauna

Tuesday, January 4, 2005 10:17 AM CST

(More Christmas Photos Added)

I (Shauna) had a little (okay, not so little) freak out last night. Mike and I are playing in a recreational soccer league, and we had a game last night, so we took the kids to watch. Just as we were heading out onto the field, I noticed Spencer had a messy diaper--diarhea. I changed him, put his diaper on, pulled up his pants, and he started SCREAMING and grabbing his diaper area and saying "ow ow ow!" I rechecked his diaper to make sure nothing was pinching or poking him, and it wasn't. He kept saying that he hurt. He did settle down and seemed fine the rest of the evening, but it really stressed me out. Before we found his tumor before, his stools were always very runny, and although he never complained of it hurting to pee, I know a lot of little kids that showed that symptom before their tumor was discovered. Mike said it was probably just a stomach bug, and his diaper area was probably just sore from the diahrea. He's probably right. Spencer is acting totally fine today and hasn't had any more diahrea. Just weird. I can't really handle stuff like this--I'm just counting down the days until his next scans. He kept waking up again last night, crying. It stresses me out. We go in to the clinic as soon as we get back from Disney World, which will be reassuring.

Last night, driving to the soccer game, the kids were sitting in the back of the van being pretty quiet, and Mike and I were listening to music in the front. I heard Spencer say, "Soph. SOPH!" Sophie said, "What?" "I love you, Soph." "Wuddu too!" Ahh, the joys of parenthood!

Thanks for stopping by. We appreciate your continued prayers for Spencer and our family.

Shauna

Monday, January 3, 2005 9:33 AM CST

**New Christmas Photos added**

HAPPY NEW YEAR! We had a fun weekend. Our neighbors and their kids came over to celebrate New Year's with us. The kids were told they could stay up as late as they wanted and no grown ups would tell them it was time for bed. Well, they took us at our word, and were night owls more than the grown ups. Sophie, finally decided she had had enough, and Annie chose to go have "just a little rest on her bed" around 1:00, but Spencer was ready to settle in to another movie and was quite put out when Mike decided that he needed to go to bed, since the whole rest of the house was heading that way. Everyone had a great time, though.

Then, on New Year's Day, we and our neighbors recongregated for a big New Year's breakfast of pancakes, eggs, bacon, etc., and then I (Shauna) went out for an 18 mile run, while the kids played together and the dads played computer games. Joy, who sadly is now on doctor's orders to not run for a while, supported me anyway by driving her car ahead and waiting with gatorade and water for me every few miles. She's awesome.

Last night, we had a family council about our trip to Disneyworld. The kids got to say what things they wanted to see and do and we planned a rough itinerary for our trip--what we'll do and when we'll do it. We are all very anxious for Saturday to arrive. Annie woke up this morning saying, "Five more nights! Just five more nights before we go to Disneyworld!"

Spencer scared us the other night. The night after he woke up hugely thirsty all night, he woke up again and I went into him and he was on the floor by his bed. I went to pick him up to put him back in bed and felt that he was hot. He had an almost-101 degree fever. It's his first since he came of treatment, and I wasn't sure what to do. I didn't know if we could give him Tylenol, or if we needed to just wait and see what it did. We finally ended up giving him Tylenol because he couldn't sleep, and the fever went away and never came back. It's cool to see his body fight things off on its own, but I still am hyper-aware of every little thing that might be something wrong with him. He has had a cough for a month, that doesn't seem to be getting worse, but isn't going away either. I don't know what to make of it. At his check up a few weeks ago, his lungs were still clear. I haven't heard him cough today, so maybe it's on its way out. We'll hope.

Thanks for checking on us. We appreciate your thoughts and prayers. We hope you all are enjoying 2005. We're really hoping for a little bit more smooth sailing this year. I know our track record would indicate otherwise, but we can still hope, can't we? :0)

Shauna

Thursday, December 30, 2004 4:09 PM CST

So, today, I've included some of our "Christmas Family Photo" outtakes for your viewing enjoyment. Spencer is always the hardest one to get to cooperate in any photo op situation, so most of the outtakes are a direct result of something Spencer did or didn't do. The middle photo, though, was Spencer trying not to smile or laugh for the camera. When he thinks something is funny, but he's a little embarrassed, too, he stretches his mouth wide to try not to smile. I think it's pretty funny.

Speaking of Spencer, I was looking at photos today from his first hospital stay of the year. He came up next to me and gave my arm a hug. I said, "Spencer, who do I love!?!" He said, "I dunno." I said, "It's SPENCER!" To which he replied, "And Jesus! And Santa Claus!"

Sophie has taken to sitting in a bucket to watch TV. It's a dishwashing detergent bucket, so it's not huge, and she barely fits in it. I'm not sure how comfortable it could possibly be, but she seems to think it's pretty cool. I took a picture of her doing it today. I'll post it soon.

Today also marked a big day in Sophie's life. We transitioned her crib into a toddler bed. She is so excited. She's such a shorty, we had to put a stool next to it for her to be able to climb into it, but she has spent a good part of her afternoon laying, jumping, and playing on it. We'll see if the fascination carries over into the night when we try to get her to actually sleep in it. . .

Annie's big rite of passage came yesterday. She had her first big girl shower. I had the little kids in the tub, and the three of them just don't fit very well anymore, so I asked her if she wanted to try a shower, and she did and LOVED it. She has informed me that she will no longer be taking baths, that she'll just shower every day like Mom and Dad. What a little grown up!

Today was Jacob's off-treatment party at the clinic. The kids (especially Spencer) were excited to go to the fishy room for the celebration. However, Annie and I woke up with upset stomachs this morning, and I didn't dare go in case it was something contagious. We need to schedule Spencer's party sometime soon.

I'm already getting anxious for his next scans to arrive. Last night after he went to bed, he kept waking up thirsty every few minutes, and then drinking a LOT. He'd drink an entire sippy cup and then fall back asleep for 15 minutes or so, and then want another big cup of water. Today he's acting fine, and wetting his diaper well, so I don't know what it meant, hopefully that he was just thirsty, but it doesn't take much to make me paranoid these days. It will be nice to be able to have our first "off-treatment" look at what is going on inside that little body of his. Mid-February. . .

Well, I need to do catch up on laundry. I never think we have that many clothes until I have a big laundry day, then I'm cursing the fact that we have so many. It's another 70 degree day here in Austin, and I'm loving it. This weekend, I'm doing an 18-20 mile training run. Wish me luck!

Thanks for stopping by. We appreciate your thoughts and prayers.

Shauna

Wednesday, December 29, 2004 6:33 PM CST

I added more farm pictures in the photo album. We have so many vacation pictures, I think I'll try to change them out every day until we get through my favorites.

Karla with Make-a-Wish came today. She brought Spencer a stuffed animal moose tied to a bunch of helium balloons. The balloons were what finally lured Spencer downstairs from hiding. She had a box of "Make-a-Wish" t-shirts and a hat for Spence, along with other gifts. There was a video included that detailed many of the Disney attractions, and the kids now all officially have Disney World fever. We are so excited to be going and looking forward to the relaxation and fun of it all.

The weather has been gorgeous today. The kids all played outside in t-shirts and had a ball. I spent a good portion of the afternoon pushing Sophie and Spencer in the swings and helping Sophie go up and down the slide. It's hard to remember that it's December when it's 70 degrees outside.

Thank you for visiting. We hope you all are enjoying the holidays.

Shauna

Tuesday, December 28, 2004 6:41 PM CST

(I added pictures from our trip to Wheeler Farm in Salt Lake City)

Today I took up the battle against the insurance company again. It was nice to have a week and a half break, but it also meant that I have a lot of catching up to do. I spent most of my morning on the phone handling claims and bills.

Mike and I have been so saddened by the devastation in Asia from the tsunamis. The loss of life is almost unfathomable to me. And we are feeling for all of the parents who lost children to the water. It's hard enough to see your child suffer when you are at their side to comfort them; I can't even imagine the grief of those parents who lost little ones to the waves and can't even find their bodies to bury them. What a tragedy.

Spencer is happy to be home and reunited with his enormous collection of dinosaurs. He kind of went through withdrawals on vacation, because we only brought 3 or 4 along to tide him over on the trip. We got home and he sat on the floor for a long time going through his dinosaur box, saying, "It's sharp tooth raptor! I FOUNNIT! It's triceratops! I FOUNNIT!"

Tomorrow, Make-a-Wish is coming to our house to bring us our flight itinerary and other things that we'll need for our trip. And we got a bunch of papers in the mail from Give Kids the World, where we will be staying during our trip. The kids are so excited. Annie keeps saying, "We're going to Disneyworld!" To which Spencer replies, "Disneyworld? YEA! DISNEYWORLD!" I don't think he really gets yet exactly what Disneyworld is, but he knows it's something pretty great. I know that he'll totally love it. We are all excited about the trip.

Spencer got a toy ambulance for Christmas from his Grandma and Grandpa Sorensen. It's a very noisy toy, and says a bunch of things like, "We have lives to save here!" and "What's your ETA!?!" along with all the siren wails imaginable. Annie and Spencer are playing with it in the other room, and I just heard Spencer repeating, "We'll be there in TWO minutes!" It made me laugh.

I need to go get my kids to bed.

Shauna

Monday, December 27, 2004 8:09 AM CST

**New Pictures**

We're HOME! Shauna here. We survived the "Day After Christmas Airport" scene, and are happy to be back home again. We had a great time in Idaho. We celebrated my birthday and Santa was good to everyone, so the kids thought that it was one big party (because it pretty much was). It was really cold while we were there. One day, with the wind chill factor, it was 20 below. BRRR! But, the kids didn't seem to mind the cold, and kept begging to go out and play in it. It snowed one day we were there, and Annie was in heaven, out playing in it. We had to drag Spencer kicking and screaming back into the house before his fingers froze off one day, and he was begging to go back out within a few minutes. It was really nice. The kids got to see their two living great-grandmothers, and they played with all of their cousins.

It was funny, I was unpacking last night and I kept thinking, "We have to get up and go to the clinic in the morning." Then I'd correct myself, but I couldn't get rid of the nagging feeling that we had a hospital appointment this morning. I guess old habits die hard. :0)

Anyway, we hope you all had a wonderful Christmas. Thanks for checking on us.

Shauna

Monday, December 20, 2004 10:55 AM CST

We have had such a good time on our vacation so far. We've visited with family and friends, some of which we haven't seen in years. The kids have played hard with their Jones cousins and uncles and aunts. We went to Wheeler Farm with the kids. We all had a really fun time looking at the ducks, rabbits, cows, horses, pigs, sheep, cats, pigeons, etc. They were all sad to leave. We also visited the lights on Temple Square in downtown Salt Lake. For those of you who don't know, it has an amazing display of Christmas lights during the Christmas season. It was beautiful and the kids were enthralled by the Christus statue in the visitor's center and the outdoor nativity almost as much as the spectacular lights. It's been a really wonderful trip. Today we are heading up to Idaho to spend the remainder of our vacation with my (Shauna's) family. So, the fun continues. Mike's back is having problems again--same spot as before, which is putting a damper on his activity level, but he thinks it's feeling a little better today. Spencer is on cloud nine. He loves being around little kids--it's such a nice change from the isolation of the better part of this year. He seems to be feeling good and has lots of energy.

Thanks for stopping by. Have a Merry Christmas!

Shauna

Thursday, December 16, 2004 1:05 PM CST

Spencer had his check up on Tuesday morning. His counts are awesome! His whites were 7. something, his hemoglobin was 10. something and his platelets were 250 something. It was very exciting. Monday night I told Spencer that when he woke up, we'd go to the fishy room. He was so excited that I had a hard time getting him to go to sleep, and he woke up first thing on Tuesday saying, "Fishy Room? Jennifer?" And to make things even more exciting, Allie was volunteering in the clinic, so she and Spencer played together for a long time even after he was all done with his appointment, because I didn't have the heart to make him leave.

I asked Jennifer how she does it, watch a child die one night and come to work the next morning and do her job like any other day. She pointed at Spencer and said, "That's how I do it." She refuses to give up on the other children who are still fighting and need her to help them fight. I can't even express my gratitude for Jennifer, and others like her, who have the compassion and strength to keep doing what they are doing day in and day out without becoming calloused and distant from their patients. I'm touched and amazed that they still allow themselves to love the children they are helping, instead of building a wall of professionalism to keep out the possiblity of being hurt. Jennifer is incredible. We are so blessed to have her as Spencer's nurse and as a friend. I called her late Tuesday night because I was doing the dishes and suddenly panicked that Spencer's port-a-cath would set off the alarms going through security and that we'd have problems. She reassured me that he'd be fine, and he was. We love Jennifer.

Yesterday, we got up way too early and got on a plane to come to Utah. But, not before we got held up at the Austin airport. And, of course, it wasn't for the port-a-cath like we had feared. Apparently there's someone on the national government's terrorist suspect list named Mike Jones (what are the chances?) :0), so we had to sit and wait while they ran a background check on him to make sure that it wasn't THE Mike Jones that they were looking for. And luckily, he wasn't. So, other than that little hold up, the day went really quite smoothly, and we arrived safely and are having a great time with Grandma and Grandpa Jones. Uncle Ryan and Aunt Malissa (Mike's little brother and his wife) came over last night and wore the kids out playing down in the basement with them. It was fun. Then, we put the kids to bed and played cards with them for a while. It's good to be home.

Thanks for checking on us.

Shauna

Monday, December 13, 2004 9:17 AM CST

(New photos added)

I spent most of last night crying. One of the little boys that we know from the clinic, Alex Dierking, passed away from Leukemia. I saw him at the Any Baby Can Christmas party on the 2nd, and he was running around and playing with the other little boys like he was the healthiest kid in the world. I talked to his mom and his dad and they both said that he was doing pretty well and was feeling good. Then, on the 8th, he started running a fever which progressed to congestive heart failure within a few days. He passed away last night, with his mom and dad and other loved ones by his side. He was an only child, adopted from Russia as a baby, and I cannot imagine the grief that his parents must be feeling right now. As I have followed his page closely in these last few days of his life, I have just been overwhelmed with the magnitude of cancer in our lives. It is a never ending presence whose shadow is dark and long. I have seen so many sweet little children lose their lives this year, and so many grieving parents struggle to pick up the pieces of their shattered lives and keeping living without their precious children.

Mike made the comment the other night that when people hear that Spencer is through with chemotherapy, they say, "Oh, so you're all done, right? How nice!" Mike said there's no way to explain to them that you are never "done." You still have to live in constant watchfulness for signs of cancer's return, and live in preparation for the sometimes devastating effects of chemotherapy and radiation, the very things that saved your child's life in the first place. And then there are all of the other children that you meet and can't help but love and cheer for who continue to fight every day for a childhood that should be just a given, but instead is a hard fought, daily battle. And too many are losing the fight.

Children all over the world go to bed, fearful of imaginary monsters under their beds and in their closets. We as parents reassure them that there are no such things as real life monsters and they don't need to fear. But, I'm realizing that there ARE monsters in this world. Cancer is a real life monster--ugly and ruthless, seeping fear and grief into people's lives. I dreamed last night that Spencer was the one in the Intesive Care Unit and I was the parent holding his little hand, begging him not to leave me, and then realizing that I had to allow him to go. It was awful. It's never ending, the effect that cancer has had on our lives. I wish that there were something that we could do to ease the pain for Alex's parents, and all the other parents that we know who are grieving this Christmas without their children, but I know that there isn't anything we can do except turn it over to the Lord, who is the only one who can bring peace in such a time of suffering.

As I think of Christmas this year, I am overwhelmed at the magnitude of the gift of Christ's life and Atonement. His birth was a quiet and, to most people in the world, uneventful night, and He lived a simple and humble life. He willingly gave his life as a sacrifice so that all of these suffering children, and all of their suffering parents, and a whole suffering world, could look beyond death and find joy and peace and eternal life. "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." (John 14:27)

Thank you for your prayers. And for your continued support. We hope you have a blessed and thankful Christmas.

Shauna

Saturday, December 11, 2004 1:18 PM CST

UPDATE: We had a little bit of trauma here this morning. Spencer was playing on the bottom step of the stairs and slipped off and fell face-first into our newly-installed laminate wood floor, and he chipped the corner of his front tooth. I (Mike) was gone, so poor Shauna had to deal with the chaos by herself.

Shauna called me on my cell phone, but by the time I got home, Spencer was settled down and cleaned up. He showed me his chipped tooth, and I could see he'd been crying. Annie had already made him a "get-well" card. It said "Dear Spencer - From Anne." She told me, "I couldn't write 'I'm sorry that you fell and broke your tooth.' because I don't know how!"

We called the on-call dentist and he said that unless the tooth was visibly displaced or loose (which it wasn't), there was no need for emergency care. On Monday we'll see what they can do to fix it. He's having a rest right now. He doesn't seem to be in pain -- in fact, I'm certain that it was more traumatic for Shauna than it was for Spencer.

Anyways, we're hoping that the dentist can do something to fix it (?) and also hoping to avoid anymore excitement for a while.

-Mike

Saturday, December 11, 2004 10:48 AM CST

When we were thinking of a name for Annie, I (Shauna) was the one who asked for the name Anne. I LOVED Anne of Green Gables growing up, and I thought that Anne was such a pretty name. Plus, it's Mike's mom's name, too, (Ann) so it seemed the perfect name for our first little girl. I've decided now that she is living up to the Anne Shirley namesake perfectly. She has such an imagination--she is always imagining and planning and creating. And she is such a talker--she could talk the hind leg off a mule, that girl. The other night, she and Spencer were "going to sleep" together in their room. Mike and I were trying to watch a movie together in the next room, and we could hear Annie jabbering to Spencer about everything from Christmas to unicorns. Interspersed with her chattering, she'd yell out to us a play by play update of what Spencer was doing. "SPENCER'S SITTING UP! NOW HE LAID BACK DOWN! NOW HE'S UP AGAIN!" We kept hollering in to them to tell them to be quiet and go to sleep. Annie started yelling "SPENCER'S OFF HIS BED. . .NOW HE'S ON IT AGAIN. . .NOW SPENCER'S OFF HIS BED AGAIN." At this, we could hear Spencer start to cry, and Annie's constant stream of words just continued, "AND NOW SPENCER'S HURT HIMSELF. And that's NEVER a good thing." We burst out laughing. She is quite the verbose girl, and she has a hard time being quiet even when she's trying her hardest. But it's been good for Spencer, because Anne has taken it upon herself to teach him to talk. I hear them having English lessons all the time.

Annie: No, it's SHarptooth, not Fartooth.
Spencer: FFartooth
Annie: No, say SHHHHHHHHHH
Spencer: SSHHHHHHHHH
Annie: Now, say arptooth
Spencer: artooth
Annie: GOOD! Now say SSSSSSSSSHHHHHHHHarptooth.
Spencer: SSSSSSSSHHHHHHHHartooth!
Annie: Great talking, Spence! MOM! I taught Spencer how to talk!

They are quite the pair. They have so much fun playing together, it makes me happy that Annie is being homeschooled this year. Spencer would be lost without her. Last night, Annie had a dance performance at the Round Rock City Christmas Festival. It was very crowded and crazy, but she was very cute and did a great job. Spencer wasn't particularly impressed with the waiting for the performance, and kept telling Annie to "come ON!" (meaning, "Let's get out of here!"), but Mike took him to see Frosty the Snowman, and that appeased him long enough to last until the performance started. All the way home he told us about Frosty the Snowman. It was cute.

The weather has been beautiful here--in the 60's and 70's all week. I'm afraid for our trip to Utah and Idaho. I fear we are all going to turn into icesicles. We've gotten soft living here in the land of eternal sunshine, but we are all counting down the days to seeing Grandma and Grandpa again.

Spencer has a check up on Tuesday morning. It's his first since his scans. It's been almost a month since we were in the clinic. It's so strange, but it's been so nice not to have to get up and go every other day.

We got a couple of books in the mail from Candlelighters. One was for Annie. It's called "Oliver's Story: for 'sibs' of Kids with Cancer," and both Annie and Spencer love it. At the end of the story, Oliver's parents give him a trophy for being the "Best Brother in the World" for all the help he gave his little sister during treatment. I asked Annie what she had done to help Spencer while he had cancer. She said, "I made him a card when he finished chemo." I said, "That's right. And you went to the fishy room with him to keep him company. And you brought me gloves and saline and things when I asked for help. And you carried his iv backpack around for him when he didn't want to do it." Her eyes lit up. "That's right! I did help him carry his backpack." I told her that I thought she was the best big sister in the world and Spencer was very lucky to have her for a friend. She just glowed. We've spent so much time focusing on Spencer's achievements, it was really good for Annie (and for me) to focus on HER accomplishments. She has been so impacted by this year, more than Spencer in a lot of ways. She's old enough to be scared of cancer and death. She has gained so much empathy and sensitivity for others and is keenly aware of people's feelings. She is a sweet girl.

Spencer's hair continues to come in very blond. It's cute, even though it's not his old red color. (sigh) He is growing up. The other book we got from Candlelighter's was a childhood cancer survivor's guide. I started reading about the late effects of some of Spencer's treatments, and had to put the book away about 3 pages in. I just can't think about it right now. We've worked so hard to save his life with this year of treatment, and now we have to wait and see what effects that treatment will have on the rest of his life.

I've written yet another novel. I'd better go get lunch for the kids. Thanks for stopping by.

Shauna

Thursday, December 9, 2004 9:34 AM CST

As I (Shauna) type, I'm sitting on hold with BlueCross/BlueShield while I try to resolve yet another billing issue. The insurance is saying that the hospital has to write off the amount, and the hospital is saying that the insurance has to pay it. Of course, neither one is saying this to each OTHER, they are just expecting me to be the go between. But NOT today, I say--NOT TODAY! I'm making the insurance company conference-call in the billing office and have a three way discussion because I'm SICK of making a hundred calls and getting nowhere. So far, I've been on the phone with BlueCross for 36 minutes and have gotten pretty much nowhere, and that's not counting the 45 minutes I spent on the phone with the hospital before they told me to call the insurance, but the morning is young, and the insurance lady is trying to conference someone else from a different area of billing at the hospital to see if we can resolve this somehow. I'm not really holding my breath. . .

In other news, I've caught Sophie's cold, and Sophie is not really getting any better, so I'll probably take her in today or tomorrow to make sure she doesn't have ear or lung problems. Spencer hasn't been coughing today, so I'm hoping that he is getting better. I guess that's what happens when you venture out among people--you catch things. We've been pretty shielded this year as far as exposure to germs, and I'm afraid that now that we are actually doing things around others that we can just expect to be sick constantly for a while. I hope not.

Okay, I just got off of the phone--one hour later, and I have gotten NOWHERE! The hospital apparently quit writing stuff off in August, and although the hospital stay was in APRIL and should have been written off before August, it wasn't and now they won't do it. But, the insurance says they should have written it off already, so they won't cover it. So now, I have to decide whether to appeal the hospital or the insurance. I could SCREAM! Mike said that when he's done with the conference call he's on now for work, he'll take up the battle and call the hospital back.

I was crying after I hung up, and Spencer saw me and came and gave me a big hug and kiss to make me feel better. I really can't imagine how parents who have lost their child do it--they still have to fight all of the lingering insurance battles, and they don't even have their little one around to see what they are fighting for. Enough of my ranting. Life is good. It's Christmas, and Spencer is alive, and even though half our family is sick, we are together and the insurance claims are our proof that we still have battles left to fight against this cancer beast. I'll try to take the insurance claims more cheerfully as they continue to pour in, because it means that Spencer is still with us and still winning the fight for his life.

Happy Holidays,
Shauna

Wednesday, December 8, 2004 9:24 AM CST

I have just a quick Spencer story to share:

Last night, Sophie was feeling miserable and croupy and her nose was running. I asked Spencer to get her a tissue from the bathroom. He disappeared, and a few minutes later returned with the tiniest corner of a square of toilet paper, and proceeded to try to wipe Sophie's nose for her with it. I said, chuckling, "Spencer, could you get a BIG piece to wipe Sophie's nose please?" "Oway, Mom." And he ran off back to the bathroom. My attention got diverted for a minute, and I forgot the task at hand, until Spencer reappeared in the room with a hand FULL of tissue, and a trail of it dragging behind him. I gasped and jumped up and looked down the hallway, and sure enough, there was a huge pile of tissue outside the bathroom door, and another pile on the bathroom floor. The role was empty. I wanted to be angry, but I just couldn't--after all, I TOLD him to get a BIG piece, and he was so pleased with himself that he'd done it. I just shook my head and said, "Thank you, Spencer." He grinned big and said, "You're nennup!" (Which, for those of you who don't speak Spencer, means you're welcome). It was pretty cute to me, even though it was a big mess to clean up and now we have a pile of toilet paper on the back of the toilet seat, because I couldn't get it to wind back on the roll.

We are doing well, despite Sophie and Spencer's colds. I'm hoping that we are all over everything by the time we head to Utah next Wednesday. The kids are so excited to see snow and play with cousins. Today, Annie has ballet class, and Friday she has a performance in downtown Round Rock. Should be very cute, and we will take lots of pictures to share.

Thanks for checking on us.

Shauna

Monday, December 6, 2004 9:24 AM CST

Well, we went to the Christmas party at the First United Methodist Church in Pflugerville last night, and I have to say that I am almost speechless. I don't even know where to begin to describe what an incredible event the whole evening was. It was amazing. The church's youth group raised money for it and set it all up, with Briana Roehling coordinating, and it was just incredible. The guests of honor included Spencer, Jacob Faherty, Morgan Randel, Elora Candelas, and Garrett Burnham. They had a spaghetti/pizza dinner to start off that was delicious. They also had a man there who recorded all of the families singing a Christmas song to put on a cd, which Annie thought was about the coolest thing next to Santa Claus, who showed up shortly afterwards making her evening complete. Spencer and Sophie refused to sit on his lap, but Annie literally jumped out of her seat when her name was called, she was so excited to see Santa again. Santa had a sparkly play cell phone for Annie, a dinosaur book for Spencer, and a glow worm baby for Sophie.

I was sitting at our table and I looked over and saw a table full of presents. I thought, that is so nice--they have a present for each child. And then I noticed that there was a name on the table "Jacob." And then I noticed that there were tables all around the room full of presents and each table had a child's name on it. There was a full table of gifts for each one of the cancer survivors AND each of their siblings. I was so overwhelmed that I spent the rest of the evening trying not to cry. In addition to the tables of gifts, each child had a stocking and each set of parents had a gift basket and a gift bag full of gift certificates and presents. It was just beyond words. I was so touched by the kindness of these people who had never seen or met any of us before, yet opened their hearts so fully to us.

On the way home, we were talking with the children about our gratitude. Mike said, "Annie, did you know that all of those presents you opened tonight weren't from Santa, except for the one he gave you? They were from those girls and boys and people at the party. Do you know why they gave us those presents even though they don't know us? It's because they love Jesus and want to be like him. Isn't that a wonderful thing to do at Christmas time?" Annie agreed. And we talked about why we give gifts at Christmas and the gifts that Christ has given us that are the greatest gifts of all. It was such a wonderful evening, I get teary every time I think about it. The kids had so much fun. Sophie became buddies with Briana Roehling's little girl, Madison (9 years old). Madison took Sophie on walks around the room and pushed her around in Sophie's new baby doll stroller. It was really cute. The kindness and generosity of the whole evening was just so unbelievable. THANK YOU First United Methodist Church Youth, and THANK YOU Briana for helping make such a fun and memorable night for our family! We are truly overwhelmed by your kindness!

Today, Sophie is stuffy and coughing. At least she waited until most of the festivities ended to get sick. She's fussing for me upstairs now, so I'd better go. Thanks for checking on us.

Shauna

Sunday, December 5, 2004 6:58 AM CST

What a busy week! Thursday was the Any Baby Can/Candlelighters Christmas party. It was amazing. We were floored by their generosity. Each of the kids got a stuffed animal and a hard toy, and Mom and Dad got a cd player and a cd. They had a catered dinner that was delicious, and they also had craft tables set up to make Christmas cards and picture frames. Annie and Sophie got their faces painted with candy canes and Christmas trees, and best of all, Santa was there. Annie LOVED Santa. She sat up on his lap and told him what she wanted for Christmas (which, of course, was something that she had never mentioned to Mom and Dad that she wanted for Christmas) and she got her picture taken with him on a Polaroid camera for her to take and frame at the craft table. Spencer and Sophie, on the other hand, did NOT like Santa at ALL. They could not be persuaded to sit on his lap, or get anywhere near him, but Annie made up for their lack of enthusiasm with hers. After she made her framed picture, she decided that she wanted to give it to Santa for a gift. It was really sweet. So, Mike took her back over, even though there was by this time a HUGE line of kids waiting to sit on Santa's lap and asked one of Santa's helpers if she could give him her gift. They all were impressed by Annie's sweet gesture, and everyone took pictures again of Annie giving Santa her present. Santa loved it, and all the way home, Annie kept saying, "I love Santa. I really love Santa." It's definitely a magical Christmas for Annie this year, which is making it a really fun Christmas for her mom and dad as well.

Friday was our church Christmas party. It was a fun dinner and there was a live nativity and a program of Christmas songs and naration. I (Shauna) sang a solo. Spencer had a BLAST. He was running around, playing with the other kids and having such a good time, it made me smile. He'd run over to me and say, "MOM! I'm pyaying with the kids!" and then run off again. One of our friends commented on how nice it is to see Spencer at everything again. It is SO nice to be able to be social, and let him be social again. He was sad to leave. He's picked up on this "Christmas Party" idea and he's decided he really likes it. Lucky for him, we have yet another Christmas party tonight. This is the one that Briana Rohling has set up for some of the cancer kids in the area. The kids are really looking forward to it.

Yesterday was a fun, fun day for Spencer. Nurse Jennifer came to visit him and played for a few hours. It was good to see her. She is so cute with Spencer, and he loves her! He kept saying, "Jeffer! Jeffer!" and then telling her stuff. I think it felt good to him to say her name again. It was pretty cute. Sophie kept going over and sitting in Jennifer's lap, and Annie was trying to get in on all the action, too. They had a great time. Then later in the afternoon, Allie came to play. Spencer thought life was pretty sweet. Not only did he not have to take a nap, but his two favorite friends came to play in the same day. Allie is so good with all of the kids. Even Sophie protested her nap, lying in her crib wailing Allie's name ("AYYIE! AYYIE!") I finally let her get back up for a while longer so that she could play. Spencer was pretty upset when Allie left (as usual). But, right after she left, I put him up to watch a movie and he was out like a light in about 2 minutes flat.

I think all of our galavanting about is catching up with the kids. Annie and I were going to go see the Nutcracker ballet last night, and around 2:00 in the afternoon she started saying she didn't feel up to it, that she didn't feel good. She was tired, I could tell, and she was really weepy, and I didn't want to force her to go, so we ended up cancelling. I'm going to try to take her another night that it's open when she's feeling a little better. Last night right before bed, Spencer's voice was sounding a little worn down, and after they were all in bed, every one of them was coughing. Hopefully, a good night's rest will do them good and they'll feel better for the party tonight.

Oh, and in our spare time, we're redoing the downstairs floor. We are ripping up the carpet and laying down laminate wood floors. Pretty exciting and pretty hectic. Hopefully it will be a good thing for everyone's allergies. Wish us luck.

Thanks for checking on us. Have a great weekend.

Shauna

Wednesday, December 1, 2004 3:20 PM CST

*New Photos Added (And their pretty darn cute, I might add!)*

We've had a good mail week. Yesterday, Spencer's new shirt arrived (see the photo album), and already it's dirty from his brown ice cream treat this afternoon (sigh), but we like it anyway. We also got a package from the Pirros in New Jersey. They sent Spencer some MORE Land Before Time videos. These are sing-a-long tapes for all of the songs from the movies, and Spencer loves them! All of the kids do, really. Annie and Spencer watched them before bed last night and were BEGGING for more when we finally herded them into bed. They also sent a LBT coloring page and children's book. Spencer was in heaven! Thank you, Pirro girls!

And I finally got my first whiff of Spencer's candle. My order arrived today. I love it! THANKS, CATHY!!! It was a big box, and the kids were so excited to open it. I gave Annie and Spencer both a little candle tart of their own, and they were thrilled (especially Annie). We had the following conversation:

Anne: Mom! This candle smells so BEAUTIFUL!
Me: Did you know this is Spencer's candle?
Anne: But, it's really my candle cause you gave it to me.
Me: Right, but the name of the candle is "Spencer's Cherries 'n Chestnuts candle" and it got named after our Spencer.
Anne: Really? That is so WONDERFUL!
Me: Do you know why Spencer got a candle named for him?
Annie: Yes. 'Cause he's all done with chemo!

As I'm typing, the smell is wafting through the house. It reminds me of the generosity and kindness of so many people this year. We have been so blessed.

Speaking of blessed, Nurse Jennifer has come to our rescue yet again. She called today about the topotecan issue. She is working it from her end, and Dr. Sharp is going to take some extra steps to see that it gets taken care of. I love our oncology office--I can't imagine having better, more personal care.

I took Spencer to his 3-year-old well child check this morning with our pediatrician, Dr. Harvey. He was very excited to go, until he got there and realized that we were NOT at the fishy room and Jennifer was NOT there. Then, he was pretty much ticked off at everyone who attempted to touch, talk to, or look at him. He was mad that their blood pressure cuff wouldn't fit on his leg, and that they had to do it on his arm. He was yelling at the nurse, "I wannit on my YEG! MY YEG!" And the nurse DIDN'T play dinosaurs right, and the scale DIDN'T have dinosaurs on it to step up on, and the doctor DIDN'T understand that you can never REASON Spencer into letting you listen to his heart with a stethoscope. Then, when we were done, he ran up and down the hall, looking (I expect) for a toy room, which doesn't exist at our pediatrician's office. All in all, he was pretty put out by the whole experience, but he survived, and he is still in the 90th percentile on height and the 75th on weight, so this year hasn't stunted his growth all that much, for which we are truly grateful.

Annie just told me that she is putting together a "party" in the kitchen, which she does regularly and which usually requires a lot of clean up when she's all done, so I'd better go supervise. Thanks for checking on us.

Shauna

Monday, November 29, 2004 10:07 PM CST

I am pulling out my hair tonight trying to write 10 different letters of appeal to our insurance company for the 2 weeks of Spencer's topotecan treatments that they refuse to cover, despite the letter of medical necessity from Dr. Sharp. I have spent so many frustrating hours on the phone with them and have gotten nowhere. I tried to explain that they covered the first 5 doses, and then for some reason unbeknownst to me, they suddenly stopped. I asked them if they got the letter from Dr. Sharp stating that the drug was medically necessary, and they said that that was a nice start, but that it wasn't enough to prove that Spencer needed this drug for his treatment. They want me to send them any literature or medical background facts about Spencer to explain why he needed this drug and why they thought it would help him. I felt like screaming. I talked to the oncology office and they said that our insurance approved the clinical trial before we started it, so they should have to cover the drug. They just make it as difficult as humanly possible to get anywhere. I spend my life on the phone telling them something, but that's not good enough. They need everything in writing. And they said that it's not good enough to write one letter of appeal for the topotecan to be covered across the board. NOOOOO, I have to write a separate letter for every single dose he got! It is maddening to me, but I've been spending the evening writing a basic letter and then switchin out 10 dates of service and their coresponding claim numbers and confirmation numbers and trying to keep it all straight. So, I'm taking a break and journaling my frustrations.

Other than the never relenting insurance insanity, we are doing really well. Mike's back is better, and everyone seems to be mostly over their colds. This week promises to be a good one. Tomorrow we are going to a pot luck lunch with our moms group from church. Spencer has his 3 year old well-child check up with his pediatrician on Wednesday. That will be the first time he's seen her since the day he was diagnosed. We are going first thing in the morning to avoid germs. I'm excited to see how his growth has held up this year. I know that it has slowed some, and I doubt he's still off the charts in everything, but I think he's still pretty tall for his age.

Thursday is the Any Baby Can Christmas party. They are the sponsors of Candlelighters, our cancer support group, and we've heard this is a huge event. We are excited to go. Emily, our Candlelighters social worker, called this morning to see if we would want to come an hour early to miss the big crowds of kids since Spencer's immune system is still not top-notch. Then on Friday, our ward at church is having a Christmas party. Should be lots of fun.

Spencer is getting quite a bit of fuzz on top of his little bald head. It's fun to rub his head. You still look at him and think, "he's bald," but it's coming, and we're excited to see our little man with hair. We are counting down the days til we fly to Utah/Idaho to visit family for Christmas. We'll be gone December 15th through the 20th, and it is our first trip together as a family this year. We usually head home at least two or three times a year, so we are very much looking forward to spending time with family and loved ones. Then, we'll only be back a short time before we turn around and head to Disney World for our Make-a-Wish trip (January 7th through the 14th). Happy holidays ahead! We are excited.

Okay, I've written a novel, and I started out thinking I would give a short update and go. Sorry. It's cheap therapy in my book.

Thanks for stopping by.

Shauna

Saturday, November 27, 2004 8:13 PM CST

**I added some new pictures of some of the familiar faces from our time in the clinic**

We had a nice Thanksgiving. The kids enjoyed playing with their cousins, Mike and I enjoyed visiting with family, and we all enjoyed the Thanksgiving dinner. It's nastalgic to go back to Houston, to my uncle's house--that's where we lived for most of the first year of our marriage, and we've only been back a couple of times. I can't say that I really loved Houston--it was my first introduction to cockroaches, life away from our immediate families, Houston summer heat and humidity, and fire ants. In fact, I admit I have a little bit of loathing for the place--but it was so nice to be there with family on Thanksgiving Day. The kids did really well on the drive, other than the fact that Spencer kept asking if we were going to Jennifer in the fishy room the whole way there, and Annie cried almost half-way back because she didn't want to leave her cousin Zoey. As part of our Thanksgiving celebration and a way to pass time on the drive, we all took turns saying the things that we are thankful for. Annie said she is thankful for her art desk. Spencer is thankful for Sophie. And Sophie is thankful for butterflies. And we all agreed that we're thankful for NO MORE CHEMO!

We've been living up our post-chemo life. I took Spencer and Sophie to the grocery store today. The GROCERY STORE! And I was only mildly paranoid about the germs on the cart and how many people were around us at any given time. And then later Mike and I took all of the kids to Home Depot to look at flooring, and then we went out AGAIN this evening on a family trip to PetSmart to look at the fish/birds/rodents/cats. The kids LOVED it. Spencer saw lizards and frogs and didn't want to ever leave. It's so different to be able to go places when we want to like a normal family, and not have to live minute to minute according to the blood counts of the day. I'm sure Spencer's immune system isn't fully recovered, but it's probably better than it's been in 10 months, and we're making the most of it. Oh, and while we were there someone said the name Jennifer over the loud speaker and Spencer's eyes lit up and he started yelling, "JENNIFER! JENNIFER!"

I met and went running with Briana Rohling this morning. She has been a supporter in our guestbook for most of the year, and she lives in Pflugerville, the town just south of us. And we had never met, until this morning. It was great to be able to put a face to a name. She has coordinated a Christmas party through her church youth group, and we are guests of honor next Sunday, along with some other cancer families in the area. We are very excited and looking forward to spending time with our fellow cancer survivor families, and meeting the youth that have so kindly put this whole thing together.

Every year for Thankgiving, all of Mike's family members write a journal entry of the things that they are thankful for for that particular year. Even the children have a chance to say what they are thankful for, and the ones that are too tiny to put it into words get help from the parents. It's a wonderful tradition that so effectively humbles me every year at the magnitude of blessings I've received. This evening I was going back over my Thanksgiving journals of years past. I found the one I wrote in 2002--the Thanksgiving after Spencer was born and spent the first few weeks of life in the Neonatal Intensive Care Unit on a ventilator. It said, "I’m thankful for the good medical care that we have received here in Austin. Spencer might not be with us this Thanksgiving if it weren’t for the amazing care he received last year. We are truly blessed." Spencer's journal entry for that year was, in part, "This Thanksgiving, I’m thankful to be alive and doing so well." I feel like I could just ditto that sentiment this year. I'm telling you, that little boy is something special. Every year I'm more and more aware of the miracle that is his life. He must be here on earth for something amazing, because the Lord has seen fit to spare his life twice now. And he's only 3. I wonder what the rest of his life will hold. . .

I hope all of you had a thankful Thanksgiving. We sure did. We are thankful for all of you for supporting us this year and for lifting us up with your prayers, kind words, and acts of service. Thank you.

Shauna

Wednesday, November 24, 2004 10:04 AM CST

We've gone over a week now without a trip to the oncology clinic, and Spencer is pretty much going through withdrawals, poor kid. He keeps begging me for Jennifer and the fishy room. Anytime I put pants or shoes on him, he says, "We goin' fishy room see Jennifer?" It makes me smile. That's been his life for the last 10 months--everytime we get dressed to leave, it's to the hospital--and it's a big adjustment for him to go places besides the clinic. We went to a friend's house to play on Monday, and as we pulled up, Spencer saw where we were and said, "NO! I wannit the FISHY ROOM!" He was disappointed that we were showing up to play somewhere besides the hospital. It makes me feel good to know that he hasn't considered this last year to be a hardship on himself, at least! :0)

That doesn't mean we haven't been without doctors' office visits althogether, though. Sophie had her Urgent Care visit over the weekend, and Mike is at the doctor's this morning getting his back checked out. Last night he messed it up playing basketball, so he went in this morning to see what he did. Poor guy can't put his shoes on. He looks just like a woman 9 months pregnant, lowering himself into the chair so carefully, and not able to reach his own feet. I would be tempted to laugh if he weren't in so much pain.

We are hopefully heading to Houston tonight, unless Mike is physically unable to sit in the car for that long. My uncle and aunt invited us to have Thanksgiving at their house, and we are excited to go. A few of my cousins will be there as well, so it should be a really fun time. We will head back here tomorrow evening, since Mike has to work on Friday.

Spencer is feeling so good. It's really exciting to see him so full of energy. He's jumping around and running--I thought he had decent energy while he was going through treatment, but it was nothing compared to the get-up-and-go that he has now. We are so thankful.

Thanks for checking on us. Hope you all have a Happy Thanksgiving tomorrow!

Shauna

Sunday, November 21, 2004 10:55 AM CST

UPDATE: (Monday 10:41pm) Sophie's foot is finally back to normal size(whew), Spencer's energy is through the roof, and Annie is still coughing and stuffy, but acting like she's feeling a little better. Mike and I still have lingering colds, but no big drama today, so we feel like we are doing well. :o)

Well, the drama never ends around this place, does it? We kill a rattler in our garage one night, and wake up the next morning to find that Sophie's right foot and ankle are swollen to twice their normal size. I (Shauna) panicked slightly. She didn't act like she was in pain, so I doubted that she had broken or sprained anything, but I couldn't find a bite mark either, so we ended up going to After Hours Care yesterday morning to get her checked out. Allie came to play with Spencer around 10:00am, so as soon as she got here, she agreed to stay with Annie and Spencer, and Mike and I headed Sophie to Urgent Care. The nurses were all pretty shocked to see her ankle and foot so huge, and one said that sometimes children get their feet caught in crib slats, so it wasn't impossible that she had twisted it in the night. But, the doctor seemed pretty rushed and didn't even feel the need to x-ray her foot. He just said, "It's a bite. Maybe a scorpion. Maybe a spider or an ant. Just watch her and if she runs a fever, bring her back." So, we're back home a day later and her foot is still as huge as ever and she's getting a nasty bruise on the top of her ankle and foot. I don't know--if it's still big tomorrow, I'll take her in to her pediatrician. At least she's not acting like she's in pain. She did fall down the stairs yesterday because she was trying to walk on her foot and can't very well. It's pretty much impossible to tell a 21 month old to take it easy and keep her foot up. (sigh) Never a dull moment. . .

Yesterday afternoon, we went to Jacob's off-treatment party. There was a house full of people there to help him celebrate. He was diagnosed with rhabdo a few weeks before Spencer was and they've finished up treatment and entered remission about the same time. We are very excited for Jacob's family. Garrett was there with his brother and sister. Garrett and Jacob are best friends. Garrett seemed in good spirits and visited with me for a few minutes before heading off for celebratory cake. It's hard to believe that cancer is taking his life, because he looks so good and seems so healthy and happy.

We have a fun announcement. Spencer has a candle named after him! There is a sweet woman in Missouri named Cathy who has a business called Cathy's Candles 4 Kids. She makes and sells scented candles, and each candle scent is named for a child who has battled or is battling cancer. Cathy lost her own daughter, Sabrina, to rhabdomyosarcoma when Sabrina was 19 years old, and a portion of all of her profits goes to organizations that support childhood cancer research or that help families in need whose children are battling cancer. Our friend Ian has a candle named for him (Ian's Incredibly Candy Corn), and now Spencer does, too. His is "Spencer's Cherries 'n Chestnuts." I haven't smelled it yet, but I should be getting mine soon, and I'm excited! They have biographies on the website for all of the children, and the candles come with a short bio in the lid or on the label. We were really touched when Cathy offered to do a candle for Spencer. I have a few of her other scents and I love every one I've tried. I think it's a great tribute and a good cause! Thank you, Cathy!

Well, I have to go get the kids ready for church. Thank you for checking on us.

Shauna

Friday, November 19, 2004 8:19 PM CST

Well, you have to give us credit--our life is never boring. Yesterday, Annie almost burned the house down. She has a halogen desk lamp on her bedroom craft desk, and she thought it would make a pretty blue light if she stuck one of Spencer's blue pillowcases over it. So, she did, and tied it down with one of her hair elastics. Then, she decided it DID make a pretty blue light and she left it and went to play with other toys. I was downstairs reading to Sophie, and Mike was working on the computer downstairs. Soon, Annie appeared on the stairs and the following conversation insued:

Annie: My room smells funny.
Me: Does Spencer have a messy diaper?
Annie: No, it just smells funny.
Me: I don't smell anything. Are you smelling the candle in the kitchen?
Annie: No, but I can smell it here on the stairs and it smells really yucky in my room.

I was getting curious by this time, but still not curious enough to leave Sophie's story time and hike up the stairs. Luckily, Mike decided to take her seriously and followed her up the stairs. As he got about 2/3rds of the way up, I heard him exclaim, "OH MY GOODNESS! WHAT IS THAT!?!" That got me off the couch. As I went up the stairs I could smell the smokey/singed smell and ran into Annie's room just to catch the tail end of Mike taking the smoldering/glowing/smoking pillowcase from the lamp and running it into the bathroom sink. Annie felt TERRIBLE. She cried and cried and promised that she would never do anything like that again. We're lucky she's so persistent, or we may have had a full blown fire on our hands--her desk is COVERED with papers. So, we had another talk on fire safety and I think she is sufficiently informed now so as to never do anything like that again. Annie and Spencer's room smells like fire, like burned fabric. Even tonight it still stinks, but the smell is lessening a little.

Then, tonight, Mike went to take out the garbage and ran into a rattle snake in our garage. He saw the snake coiled in the corner by the garage door and immediately noticed its markings. He came in and told me and I sat in the house stressed out with the kids while he went out and killed it with our shovel. It was only 3 years old or so, but old enough to not be welcome in our home. So, we had yet another safety talk with Annie about never touching or playing or going near snakes and what to do if she ever sees a snake in the yard. Annie really wanted to see the snake, so after Mike had bagged it, he let her look at it so she would know what one looks like. There is an open field right behind our house, and now I'm nervous about letting our kids play in the backyard. No more barefoot children outdoors around this place!

In less eventful news, Spencer is doing well. He is full of energy, I'm telling you WHAT! It's great to see him feeling so good. His cough is pretty much gone and the runny nose seems to be on its way out. This is the week we would be doing a big chemo treatment if we were still doing chemo, and I can tell a difference. It's very exciting.

Tomorrow morning, Allie is coming to play with Spencer. Then, in the afternoon we are going to Jacob's off-treatment party at his house. Should be lots of fun.

Thanks for stopping by.

Shauna

Thursday, November 18, 2004 9:21 PM CST

***New Photos Added**

We had a good "at home" day today. It was nice to not have any appointments. We are still all a little under the weather. Sophie, Mike, and I (Shauna) have head colds, Spencer has a runny nose, which I think is probably allergies, and Annie has a cough that will NOT stop. I don't know what to do for her. She hardly slept last night, and she gets coughing so hard that she almost throws up. But, despite our ails, we had really nice day. We went on a walk--it was beautiful here today--t-shirt and shorts weather! It was mid-70's and clear skies. We walked over to the grocery store and got ingredients to make a recipe from Annie's new kids' cookbook. We made icecream sandwiches with brownie cookies and "brown icecream" in the middle, rolled in m&m's around the edges. They turned out really good. Then, we played in the backyard for a while and Spencer and Sophie got some good swinging in (thanks to Mom and Anne). And Annie had a very productive day at school, with lots of art class mixed in, so she loved it.

We got a call from Jennifer saying that Spencer's chest x-rays came back clean. So, the jury's all in--Spencer is cancer-free! Then, after Mike got home we put up our Christmas tree. Okay, I can hear some of you gasping that it's not yet Thanksgiving, and we've already begun decking the halls, but we are going to be visiting family in Utah/Idaho for half of December, and wanted to make sure that we got our fair share of "Christmas" before we left. Besides, I always argue that Christmas and Thanksgiving go hand in hand, because at Thanksgiving we think about what we are most thankful for, and at Christmas, we think of Christ, which is WHO we are most thankful for. Makes sense, right?

Our mood was dampened this evening, though. We found out tonight that Garrett, our friend from the clinic and a fellow rhabdomyosarcoma patient, has been deemed terminal. They knew that chemo was no longer an option, but now have learned that surgery isn't one either. My heart is breaking for them. They haven't told Garrett or his brother and sister yet. Garrett is 9 and one of the sweetest kids I've ever met. I just grieve for their family. I keep hugging Spencer. And Annie. And Sophie. It was not very long ago that Garrett's family was celebrating Garrett's remission, and then facing a relapse, and now a future without him.

I remember when Spencer was first diagnosed, and was so sick in the hospital and we were trying to take care of him and our girls at home, with all of our other responsibilities, and we were tired and worn out and overwhelmed. I kept remembering the saying, "The Lord doesn't give you more than you can handle." I remember thinking, "Who said that? Is that just something that people say, because I don't believe it!" Then, a wise friend read me Luke 1:37, which says, "For with God, nothing shall be impossible." I realized that we CAN'T handle everything. But, if you turn your burdens over to the Lord, He will carry what you can't. You CAN handle anything, if you let God help you do it. You know, I really don't know why some are granted earthly healings, while others are not. But, I do know that the Lord loves each of us dearly. He has carried my burdens and given me peace when I could not have found it anywhere else. I pray that He will carry Garrett's family through this difficult time and give them peace as well. Please keep them in your prayers, too.

Thank you for visiting. Thank you for all of the celebration in the guest book. We love hearing from you. We are so humbled by the outpouring of love for one little 3 year old boy. Thanks for celebrating with us. Last night, Spencer fell asleep next to me on my bed. Mike came in and we were watching him, this cute little bald boy sleeping so peacefully, and I said, "This is a huge day in his life. And he doesn't even know it." Mike kissed him on the forehead and Spencer gave a big sigh in his sleep. One day, when he's older and doesn't remember anything about this year of chemo and radiation and surgeries and hospital stays and iv bags and blood transfusions and shots, we'll have quite the story to tell him. Maybe then he'll realize what a miracle he is. But for now, he sleeps.

Shauna

Wednesday, November 17, 2004 8:31 AM CST

Tuesday, November 16, 2004 11:50 PM CST

Quick update for on Spencer's scans today -- His bone scan results were clear, and we're still waiting for the results from the CT and x-ray (hopefully tomorrow). It was a long day, but Spencer did very well. He drank all of his contrast fluid without too much fuss (with some help and encouragement from Dad, the Medicine Nazi, one syringe full at a time). He held very still for is CT (no sedation required for that part). He cried a little during his x-ray and after he woke up from the anesthesia (for the bone scan), but overall he did very well. We'll post the results for the other scans as soon as we have them. Thanks for your prayers.

Mike

Monday, November 15, 2004 4:05 PM CST

**MORE NEW PHOTOS**

Sophie is feeling better today. Her fever is gone, and she's cranky, which normally would not be a good thing, but after her listlessness the past few days, we'll take any show of energy we can get. I (Shauna) am also feeling better today. Annie is suffering from allergies something awful, but over all, I think we are in pretty good health. (Knock on wood). I have been cleaning like a mad woman, trying to declutter the clutter that has just collected in the corners over this year of mayhem.

We have to be at the hospital at 7:00am tomorrow, and scans will begin around 9:00. Along with his usual chest/pelvis/abdominal CT scans and x-rays, they'll be adding a bone scan and a PET scan to his list. He will have to have anesthesia for the bone scan, but we're hoping to make it through the CT scans awake. The less time under anesthesia, the better. He always wakes up with a terrible cough and voice. I don't expect to have results for a day or so, but just getting the scans behind us will be a big step in the right direction.

Please keep our friend Ian's family in your prayers as they pass through their first holiday season without him. Ian passed away on Father's Day this year, and it has, of course, been a struggle for all of them. I think of them often, along with all of the other families who have lost little ones this year.

Shauna

Sunday, November 14, 2004 8:37 AM CST

**NEW PHOTOS ADDED**

Sophie is still running a fever around 103. She has vomited a couple of times, but I'm beginning to think it's not a stomach bug, just a byproduct of her congestion. If her fever continues today, we'll take her in to see a doctor. I am feeling like I'm coming down with something, too. My throat is swollen and sore and I'm feeling achy. Annie has complained of a sore throat now, too, but she's still chasing Spencer around the house, so I'm guessing hers is a really mild case--maybe just allergies. Spencer is still coughing some and occasionally has a runny nose, but he seems to feel okay. No fever, still good appetite, etc. I'm hoping that he will escape whatever it is that's passing through the house.

Day after tomorrow is scans. It will be good to have them over with.

Shauna

Friday, November 12, 2004 10:25 AM CST

UPDATE: (5:54pm) It seems that Sophie has the stomach flu. She has been running a 101-102 fever all day and is vomiting and nauseated. Poor kid has just wanted to be held or asleep all day. She hasn't had anything to eat or drink. I tried to syringe some gatorade into her mouth, but she spits most of it back out. Annie has also been complaining of a stomach ache, but so far no fever. We'll keep our eye on Spencer. . .

I (Shauna) ran a half-marathon this morning! My friend Joy and I did it together and it was awesome. We were done by 8:30am. Mike took the kids and met us at one of our check points. It was funny. We were running along a pretty busy road, and heard someone whoo-hooing and hollering. My first thought was, "What IDIOT is yelling at two women trying to run in peace!" Then I saw the "idiot" was my husband. It made me laugh. He was cute, and the kids were all very excited to see us. They had picked up donuts and orange juice for the finish line. Then, Steve and Daniel (Joy's husband and son) met us at the finish line to congratulate us.

It was a great feeling of accomplishment. As we finished the last stretch of the run, I remembered a quote by Jeffrey R. Holland that says, "If you have anything left to give at the tape, then you've run the wrong race." We practically sprinted the last 0.1 mile--and the whole time I thought of Spencer and this year. This race to me has felt like a representation of our struggle this year. I wanted to do it, despite the insanity of the year--to prove to myself that cancer did not rule my life. It's been hard to train, with the uncertainty of our lives and frequent hospital visits, but I figured if Spencer could give the fight of his life to beat cancer, then I could certainly run 13.1 miles. And there was Joy, by my side, like she's been this entire year, training for a race that she never really wanted to run. But she stuck with me because it meant a lot to me and we finished it together. I don't know what I would have done without her this year. She has watched the girls so many times so that I could take Spencer in for check ups or transfusions or chemo. She has been my moral support and just made this whole thing more bearable. She's amazing. I was really emotional as we finished. It's a hard and long race, but we DID it--and what an accomplishment. Annie kept saying, "Good job, Mom! Good job!" Spencer ran out to give me a big hug. And Sophie, who wasn't really ready to be up for the day, gave me lots of nice cuddles at home afterwards. My little inspirations!

Emily (our Candlelighters Social Worker) came out this morning for a visit. It was good to talk to her. She has been a big help this year fighting insurance claims on our behalf, and just making sure that we are hanging in there. She's great.

Spencer and Annie are over at Joy's house, so I need to get Sophie up for the second time this morning, and head over there for a luncheon group from church. Thanks for checking in on us. We appreciate your prayers.

Shauna

Thursday, November 11, 2004 2:36 PM CST

Quick update: My mom does NOT have to have heart surgery. The cath scans showed a smaller tear than the echocardiogram indicated, so they will just continue to do scans every 6 months to monitor and make sure it doesn't increase. Thank you for your prayers on her behalf. Our family really considers this a miracle.

Spencer's counts are good. His whites were 20 (too high, but probably from the neupogen), his reds were 9.9, and his platelets were 101. So we don't have to go back until Tuesday for his scans. I ran into Morgan's mom and Jacob's mom. It was good to see both of them.

Spencer was a very big boy again today. He climbed up in the big boy chair without me and let Jennifer access him and deaccess him without fussing. He's just growing up so much! I'm so proud of that little man.

Okay, we're off to play. Thanks for checking on us.

Shauna

Tuesday, November 9, 2004 7:03 PM CST

**NEW PHOTOS ADDED**

What a day. Annie's finger isn't broken--it's just a bad sprain. So, she has a splint to wear for a few days and then needs to do some exercises to keep it from getting stiff. We went straight from there to the dentist's office, and I (Shauna) finally got my teeth cleaned. I had to cancel my cleaning a few months ago because of a last minute blood transfusion, and then had scheduling conflicts up until now. We came home from there and had lunch before I turned around and went to my ENT for my thyroid ultrasounds reslts, which were also good. No noticeable changes to the left lobe, so I don't have to go back for another year.

I'm worn out. I keep expecting things to slow down and they just aren't--Mike says it's because I keep saying they are going to slow down and am jinxing us. So, I'll just keep my mouth shut for a while. I talked to my mom tonight. She and my dad are heading to Salt Lake City tonight. My mom has tests tomorrow and open heart surgery on Thursday. It's her third heart surgery to date--she has had two mitral valve replacement surgeries, and they are replacing her aortal valve with a mechanical one this time. She is nervous about the whole thing, having been through it twice before and knowing how difficult the recovery is. Please pray with us for a smooth and successful surgery. She has been so good to us this year, coming to take care of the girls every 6 weeks, I wish I could be there to take care of her. Maybe after Spencer's scans. . .

I hear Sophie not going to sleep upstairs. I had better go check on her. Thanks for stopping by.

Shauna

Monday, November 8, 2004 5:03 PM CST

UPDATE: (7:30pm) We think Annie may have broken her little finger. She sat on it, of all things. Just went to sit down on the couch and sat on her hand. It's a little swollen and bruising around the joint. I called a nurse and she said that if it wasn't noticeably bent out of shape, we could bring her in in the morning. So, add to our appointments tomorrow--Annie visiting the pediatrician at 9:00am. Ahh, life is never dull around this place.

Shauna here. So, no such luck on the neupogen or the visit-free week. Spencer's white counts are up (3.8), but he also has a cough and runny nose, so Dr. Sharp thinks the white counts may be elevated because of the illness, so he got neupogen in the clinic today and we will give him 2 more shots at home and then come in again on Thursday for more blood checks. His platelets are still low (28), but just high enough to avoid another transfusion. We are supposed to watch for unusual paleness and/or bruising and come in before Thursday if we see any of that.

He is getting so grown up. When we were in last week, he climbed up in the chair and let Jennifer access him without sitting on my lap. He did it again today. He was really good about it, too. (sigh) One of the nurses commented on how grown up he's become. She said that when he came in for the first time, he was still a toddler, and now he's a little boy. It's true. He is tall and thin, and he sat and let Dr. Sharp listen to his breathing through the stethoscope without a single complaint. He's come a long way, I tell ya.

Tonight is Annie's art class at the Rec Center. She's so excited. Tomorrow I have a dentist appointment and an appointment with my ENT to review my yearly thyroid ultrasound. I had half of my thyroid removed a year ago because there were nodes on it and they couldn't rule out cancer until they took out the lobe and biopsied everything. It ended up being benign, but I remember being so afraid of cancer and terrified of the thought of going through treatment. Little did I know that in another 2 months, I would be living something far worse--cancer treatments for my 2 year old child. I would so gladly have traded places with him in a heartbeat, but life doesn't work that way, and I believe there's purpose in that.

Our friend Garrett recently had scans that showed that his tumor continues to grow despite chemotherapy. He is a sweet little boy who is so good to Spencer. The last time they were in the clinic at the same time, he had Spencer just about in tears with laughter. Their family is trying to find another course of action for Garrett, but their options are running out, as this is a relapsed rhabdomyosarcoma. Please pray for their family to have wisdom in choosing a treatment path and peace in what lies ahead.

I've been thinking about miracles lately. I have seen so many children this year who have lost or are losing their lives to cancer, despite faithful, prayerful parents who have undoubtedly pleaded with the Lord for their lives. I know it's hard to see a miracle when you're losing your child to cancer. But despite all of the tragedy, I truly believe that miracles happen. Our Father in Heaven knows us. He loves us. He watched his own child suffer and die. He knows how it feels. And every time I look at those precious children's lives, I can't help but see a miracle. Each one of them touch more people's hearts in their short lives than many of us in a lifetime of living. They are miracles, every one of them. True miracles.

Thank you for visiting Spencer. We are so grateful for your thoughts and prayers. Thank you.

Shauna

Sunday, November 7, 2004 10:45 AM CST

Today is hopefully the last day of neupogen shots for Spencer. None of us will miss those. Spencer's counts were really low on Friday, so I (Shauna) will stay home with him and the girls will go to church with Mike. Again, hopefully this is the last day that we'll have to be home bound by extremely low counts. His ANC on Friday, after the platelet transfusion was around 90 (above 1,000 is safe). He is still pretty bruisy, but not as bad. Poor kid--he looks beat up. Tomorrow morning we go in for blood counts and then will hopefully get a week off between then and his scans on the following Tuesday. It will be good to have a week at home.

OH! I forgot to mention some very exciting news from Spencer's birthday. Annie lost her first tooth! We were driving home from her ballet class and Spencer and Annie were eating rolls. Annie said, "Mom, my tooth just broke out." I freaked out a little--imagining a broken tooth. I had NO idea that she was old enough to lose teeth, so it came as a complete shock to both of us. Once my mom kindly pointed out what had happened, I was very excited for Annie. She wrote a note to the tooth fairy and told her where to find her tooth and asked if her mom could keep it for her scrapbook and if she could still get money for it. The tooth fairy was very obliging and Annie got two shiny quarters and I got to keep the tooth for posterity's sake. She has been telling any one who will listen the story of losing her tooth. She's very excited that she's a big girl now.

Thanks for checking in on us and for thinking of and praying for Spencer.

Shauna

Friday, November 5, 2004 8:38 AM CST

Spencer's birthday was a fun day. Spencer had a good time. He got a tent and sleeping bag from Mom and Dad, and a dinosaur flashlight from Grandma and Grandpa Sorensen, so he and Annie had a good time playing in the tent all day. Annie had ballet, so I (Shauna) dropped off Annie and my mom at the dance studio, and Spencer and I went to HEB for a roll--which was his food of craving yesterday. He had fun chasing the birds in the parking lot and sitting on the bench outside eating his roll. It was a nice fall day, and he was in such a good mood.

The low point of the day was having to give him his neupogen shot on his birthday, but it was short lived and he forgave me quickly. His party was a big hit, too. Our neighbor Joy and her two boys came, along with Nurse Jennifer, Duvette (his Early Childhood Intervention Specialist), and Allie (his hospital volunteer friend). We had pizza and a shark pinata, and had dinosaur cake. Spencer kept going up to play in his tent upstairs, but he had a really good time and got very spoiled by presents. He got lots of new dinosaurs and Jennifer found his favorite book from the clinic and bought him one. He was happy. I keep asking him how old he is, and he says, "4." I can't convince him that he's only 3. :0)

Yesterday, I took all of the kids into the clinic, thinking it would be just a short visit to check blood counts and we'd be on our way. I should have known better. He kept bumping his head and getting nasty bruises, and sure enough, he needed a platelet transfusion. That's where the adventure began. He had a pretty bad allergic reaction to the platelets (which he pretty much slept through, thanks to the double dose of benedryl that he got). He had hives, itching, coughing, congestion and had about 4 or 5 nurses around him at one point. They called Dr. Sharp, who was temporarily out of the office, but by the time he got back, the reaction was pretty much over.

So, Spencer only got part of the transfusion and stayed on fluids and slept for a few extra hours just to make sure he was okay. It ended up being a really long day, but Joy came and got the girls and brought us lunch right before the transfusion began, so when Spencer's reaction got underway, she took the girls out and went home, which was good. Annie was concerned about Spencer, as usual. Spencer started heaving at one point from the coughing, and I could hear Annie saying, "We don't want him to get sick again! This is bad." I think she associates him throwing up with cancer because he was throwing up the day he was diagnosed. Poor kid. Jennifer took Spencer's blood again before we left so they could see how many platelets he did get. She should call today with those counts. His white counts were 0.3, so we'll keep doing neupogen through the weekend and we'll probably stick around home for most of the weekend.

ANYWAY, today is the first day in a LONG time where we have NOTHING scheduled. No appointments, no therapists visiting, nothing. It's bliss. I woke up and went on my morning run with Joy and didn't worry about having to get back and get the kids ready to leave immediately. I showered and dressed and am ready to attack my house and get some cleaning done. I told Mike, I feel like we have a new lease on life. Early Childhood Intervention Services ended when Spencer turned 3, and his clinic visits should get fewer and farther in between from here on out, so our busy schedule is coming to a sudden halt. I'm a STAY-AT-HOME mom with stay-at-home kids. Imagine that! I'm sure I'll have mixed emotions about that fact later on, but for today, I'm feeling like we are getting a fresh start and life is good!

Thanks for visiting. Thank you for all of the guestbook birthday wishes for Spencer, for the cards and phonecalls, for the gifts and visits. You are all wonderful and we are blessed by your part in our lives.

Shauna

Wednesday, November 3, 2004 8:56 AM CST

Happy Birthday, Spencer!

You're 3 Years Old!

Tuesday, November 2, 2004 9:01 AM CST

Yesterday, I (Shauna) took Spencer in for a red blood cell transfusion. We were there most of the day, but Spencer was happy, so it was a pretty easy day. He had one tantrum when he was supposed to get his blood pressure and temperature first thing, and he didn't think he had had enough play time, but after a brief time-out, he recovered and was pretty chipper the rest of the day. His energy from the weekend has carried over. He was jumping up and down in his chair and giggling and tickling me and being silly. It's fun to see him feeling so good.

Tomorrow is Spencer's 3rd birthday! I can't believe he is that old. But in some ways, I think it's amazing that he has been through as much as he has, and it has only been three years. The day we brought him home from the hospital, after spending almost 2 weeks in the Neonatal Intensive Care Unit for underdeveloped lungs, there were tornadoes all the way up and down the freeway and we had flooding so bad that there were boats going up and down some of the streets. That should have been our first clue that life with Spencer would be an adventure. :) We feel really blessed to have him here with us to celebrate tomorrow. I wondered at the beginning of the year if we would get to celebrate his third birthday, and here he is--jumping around on the furniture and running around the house like a litte tornado. Life is sweet.

We lost another of our caringbridge heroes this week. Connor lost his battle to rhabdomyosarcoma yesterday morning, the morning after his 10th birthday. He was his parents only child and was such a blessing to them. He will be greatly missed.

I heard Annie talking to her friends the other day. I wasn't really paying attention to the conversation, and then just kind of tuned in to the middle of it. Annie was saying, "No. It happened like this. It was really early in the morning and Spencer was sick. He was throwing up and throwing up. And Dad said, 'He's really sick. We've got to get him to the doctor.' And Mom said, 'Annie, you have to go to Kenneth's house.'" As I listened to her tell her friends the story, I was amazed at how vivid and detailed her memories of that day Spencer was diagnosed were. I don't suppose those memories will be quick to fade, either. . .

Thanks for checking on us. Spencer's scans are scheduled for November 16th early in the morning. Please pray with us for clear scans and REMISSION for a cute little three year old boy. We appreciate your thoughts and prayers.

Shauna

Sunday, October 31, 2004 7:11 AM CST

**New Photos**

Happy Halloween! We went to our ward's Halloween Trunk-or-Treat at the church last night. The kids had a good time. Annie was a bunch of grapes, Spencer was Charlie Brown, and Sophie was a duck. Sophie's costume was WAY too hot, though, and she only made it about 45 minutes into the event, before we had to change her back into her street clothes. Everyone liked Annie and Spencer's costumes, and Spencer won Best Costume of the evening. Everyone lined up their cars in the parking lot and the kids trick-or-treated from trunk to trunk. One of our friends saw Spencer and said, "Talk about turning lemons into lemonade! What a cute costume." Annie really wanted to draw the swirl of hair on Spencer's head, but I knew that Spencer would NOT go for that, but still, he looked pretty authentic, nonetheless.

Spencer had a REALLY good day yesterday. As soon as his iv came off, he was running non-stop until I finally forced him into bed around 9:45 last night. No nap, no rests, just pure little boy running around and jumping and swinging and playing and laughing. It was good to see. He really got into the trick-or-treating. This is the first year that he has been interested at all in it, and he was very cute saying "trick-or-treat" and "THANK YOU!" to everyone in the parking lot. Annie had a good time, too. There was a "Monster Mash" after the trick-or-treating and she danced and danced. Everyone else was ready to come home except for her. She danced while we all sat out in the foyer and rested. Finally, she came out and said, "I'm a little tired." So, we convinced her that we could leave before the dance was officially over, and we headed home to bed.

Somebody asked me how I felt here at the end of Spencer's chemo. I honestly don't feel any different. I keep trying to convince myself that we're really done, but in my mind, I still see us in the clinic, hooked up to iv's, and looking forward to the end. I think once we get out a little way from everything, reality will set in. We started neupogen shots yesterday and will continue those for a while, and Spencer goes in on Monday for counts and a probable red blood cell transfusion, so life doesn't really feel like it's changed much yet. Maybe once we get past his final scans on November 16th, everything will seem more final. . .

Thanks for checking on us. Hope you have a Happy Halloween!

Shauna

Friday, October 29, 2004 6:35 PM CDT

UPDATE (Saturday at noon) WAHOOO! Spencer just got to dump his iv backpack for the last time! We videoed the whole thing. Annie threw the iv bag and tubing in the garbage and now Spencer, Annie, and Sophie are having celebratory "brown ice cream" to mark the occasion. Happy times!

**MORE NEW PICTURES**

And that, my friends, is what the end of chemo looks like! I took a picture of the pump as it beeped after the last drop of chemo was delivered. I'll update more later, but I just had to announce the END OF CHEMO IS HERE!!!

Shauna

What a day. I don't even know where to start. I spent the first half of the day with Spencer at the hospital celebrating the last day of chemo. And then I spent the second half of the day at a funeral and dinner for my friend's father, who passed away from a brain tumor on Monday. It was a very emotional day for me, to say the least.

Annie and my mom came with Spencer and me today, because the Child Life Specialists threw a Halloween party and had trick-or-treating all around the hospital. Annie was a ballerina. Spencer was a boy in jack-o-lantern pj's. His costume was incompatible with his iv, so he ended up just wearing his pajamas. He was feeling slightly better than the first half of the week, but still didn't feel up to actually trick-or-treating, so Annie took his trick-or-treat bag and went for him.

Mike showed up at the end, in time to watch the pump run out and to take the kids and my mom home so that I could head straight to the funeral. I did okay until I got into the parking lot. Then, it all started to catch up with me--I almost felt like I did when Spencer was diagnosed--just overwhelmed by the magnitude of everything. And then I headed from there to funeral. It was a beautiful service and there were so many wonderful tributes. I want so badly to be able to do something to ease my friend's burden, but I know there's nothing I can do. Cancer is such an awful thing. . .

Spencer is begging for some mommy time, so I'm going to go. Thank you for your prayers and support, we really appreciate them.

Shauna

Wednesday, October 27, 2004 6:13 PM CDT

NEW PHOTOS ADDED

I am telling you WHAT!!! We are wearing THIN around this place! Spencer is cranky and feeling icky. He won't eat anything except for "brown icecream." I think he's hungry, but nothing sounds good so he won't even try. He is sick of his iv bag and won't even try to go places with it anymore. He just sits and cries until someone (usually Mom) comes and gets it for him. He is SO touchy and sensitive. If I ask him to do anything, he breaks down in tears. He doesn't want me (Shauna) out of his sight. He keeps asking me if he can play, but then he never gets very far into playing before he's done and just cranky. He was in a pretty bad mood today at the clinic--he was okay for some of it and REALLY ornery for most of it. He's just sick of chemo and not getting the rest that he needs, and he's worn out.

The rest of us are, too. Annie has been in time out for most of the afternoon for everything from scratching to throwing a bucket of water on her neighbor friend. She always acts up during chemo weeks. She is the kind of person who really needs structure in her days, and these weeks are anything but structured. The other day when Spencer's pump was dry, and I was stressing out and frantically trying to get him ready to get to the hospital, she went to my mom and was telling her about his pump and that I was saying it wasn't good and that she thought that Spencer's cancer was back. She is such a worrier. It is really hard to meet everyone's needs on weeks like this. We are really grateful to my parents and Mike's parents for sacrificing their time to be here for every week-long treatment that we've had this year. They have given the girls some semblance of security and normal life while we are running back and forth to the clinic.

We are all struggling through this week. It's going very slowly--probably because we are so close to the end that we are more impatient than before. Mike and I get so tired getting up with Spencer all night long and then trying to keep functioning during the day.

Today, Spencer and I were out of the clinic around noon, so on the way home, we stopped at Cold Stone and he got a chocolate ice cream and I tried their pumpkin flavor. We must of been quite the sight--this little bald boy with an iv coming out of his shirt, while his mom packs around his backpack for him. The lady that served us smiled at him. He has a way of winning hearts. . .

Mike told me that Seton called again about the private room charges that I have "resolved" twice. It is so frustrating to me, especially on days like this where I'm totally maxed out from the cancer obligations and feel like I can't take one more thing. That's usually when I get the bills or the phone calls about "one more thing."

Thanks for checking on us. We are half way through the week. It's dragging, but we are going to survive, right? We'll have a party on Saturday when we take that iv back pack off for (hopefully) the last time EVER!

Shauna

Tuesday, October 26, 2004 7:02 PM CDT

Whew! It's been a long day. We had a problem with Spencer's IV fluid bag last night. Home health care mistakenly provided us with a 1000ml bag (instead of a 2000ml bag), so his bag was empty by 3:00 AM. We didn't discover it until about 7:45 AM, when Shauna was getting him ready to go in to the clinic.

It's really important for him to be on constant fluids to flush the chemo out of his system. It was after 9:00 AM by the time we were able to get him into the clinic and re-attached to fluids, and he was not feeling well. Also, because he had been off fluids for so long, he had to get re-hydrated before he could get his chemo. He was getting fluids for a full 4 hours before they were able to start (at just after 1:00 PM). Shauna had an appointment at 3:00, so I (Mike) left work early to head to the clinic so that she could leave. We were there until about 4:00 PM. Yeckth.

He had perked up by the time I got there, and the home health care nurse apologized over and over to Shauna for sending the wrong size bag. She felt really badly. He watched his "Reptile Movie" (the BBC presentation "Walking With Dinosaurs" that Colleen lent us) and had a pretty calm afternoon until it was time to leave. Spencer has it in his head that all the Fishy Room toys are his (as Shauna explained in the last post). He wanted to take home a toy dragon and I wouldn't let him (imagine!), so he threw a fit all the way out to the car. The good news is, he was asleep before we made it out of the parking garage. :)

Anyways, we're pretty much ready for this to all be over -- at least the chemo part of it. We will forever have a deep and lasting hatred of that IV bag (even though deep down we know it has been a blessing to be able to do all his treatments on an outpatient basis) -- it's just so nerve-racking to have to be constantly watching to make sure that it's not caught on the corner of something as he drags it around the house or that someone isn't stepping on or tripping over it. Tonight (for example) he was playing in his room and I heard the pump start beeping. He had inadvertently pulled his access needle loose -- it was still under the skin, but no longer in the port bubble (look here if you want to see what a port looks like). Luckily I was able to move it back into place without having to call someone out to re-access him completely.

We're almost finished. It's like a mantra in my head. :) We're gonna make it. Only three more days. Hopefully tomorrow will be smoother.

-Mike

Monday, October 25, 2004 7:50 AM CDT

UPDATE: (10:49pm) So, the chemo blahs have hit early and hard this week. Spencer hit the clinic in a great mood--giggly and smiley, playing games with Jennifer and Raquel, the girl who takes his vitals. An hour or so into the morning, though, the clinic started to get crowded and Spencer's mood started fading. He kind of think he owns the joint there, and when other kids start to play with "his" toys, he gets pretty territorial. I had to remind him SEVERAL times that the toys are for ALL of the kids, not just his own entertainment.

Around 11:30, my neighbor Joy and her son Daniel came to bring us lunch and break up the day. They stayed until around 2:00, and Spencer enjoyed playing with Daniel for most of the time and I enjoyed having some company for all of the time, so I think it was a success all in all. Spencer was getting tired, but didn't want to sleep. Finally, a little before 3:00, I laid him down on a pillow to change his diaper, and he decided the hard floor of the clinic was good enough for him, and he stayed there for a good while. He even conned Nurse Jennifer into laying down on the floor with him for a little while. (When I told Mike that, he said, "And we wonder why he's spoiled.") :0) Jennifer taught him how to spin the little rubber snakes around and fling them across the room. He thought that was pretty entertaining stuff.

Anyway, we left the clinic around 3:00 this afternoon, and Spencer was asleep before we hit the freeway. He slept hard all the way home and then slept until almost 5:00.

Annie had her first day of art class this evening and she made a sculpture of a jack-o-lantern. It was very good--Mike wants to take a picture and post it so you can all see how good it is.

We got home and Spencer was caaaaraaaanky! He was just whiny and grouchy, so I gave him one of our back up doses of Zofran, and a few minutes later he said he wanted Cheerios. So, hoping that he would eat some food, I got him the Cheerios and milk. He took one bite and said, "I don't wannit. I want tortilla." So, I got him a tortilla, he got it almost to his mouth and said, "I don't wannit. I want cheese." So my mom cut him a slice of cheddar. He threw a fit because he wanted the processed cheese slices, so I got him one. You guessed it, he took a tiny bite and didn't want it anymore. He wanted yogurt. Nope. He wanted a glass of milk. Wrong again. He finally had a few raisins and Grandma talked him into most of his milk. It is so hard to feed him when he's on chemo! (sigh)

So, after all the kids were in bed, Mike and I went on a romantic trip to the grocery store for some late night grocery shopping. Tomorrow will hopefully be a shorter day, which will break Spencer's heart, but make his momma very happy.

Thanks for stopping by.

Shauna



And the countdown begins. Today is day 1 of 5 days of chemo--Spencer's LAST chemo ever (we pray)! I (Shauna) am taking him to the hospital while Sophie and Annie stay home and get spoiled by my mom and dad. This is the longest of the five days, because it takes at least half the day to get hydrated, and then the other half to get chemo. But, Spencer likes his long days in "the fishy room." If it's anything less than a full day, he feels cheated and throws a big fuss about having to leave before he was done playing with all of the dinosaurs there.

We'll update with the events of the day later. . .

Shauna

Saturday, October 23, 2004 7:53 AM CDT

Hooray for the weekend. Today, Grandma and Grandpa Sorensen are coming to visit, which has had Annie in a state of euphoria all week. At noon today, Annie is performing in her first tap recital of the season, and we are ALL excited about that. Since Spencer's counts should be up now, we are all going to church together tomorrow, so it should be a good weekend. Next week is the week-long marathon chemo treatment, so we need some relaxing fun this weekend.

Thanks for checking in on us.

Shauna

Wednesday, October 20, 2004 10:10 PM CDT

I now have a prescription for an epipen for Sophie/Spencer. And a prescription for Allegra for me (Shauna). I went to the allergist today because I have exercise induced hives. It's kind of fun to tell people that I'm allergic to exercise, but not so fun to deal with the hives after a good run. So, I went in, and they did over 100 different pokes/injections. And apparently I have a ton of allergies to trees/weeds/grasses. I have no respiratory symptoms (watery eyes, runny nose, etc.) so I was shocked. The allergist called it "pre-allergies." I don't have symptoms yet, but they'll come in a few years. Anyway, I got a prescription for Allegra to help with my hives and hopefully I'll be able to run hive-free in the near future.

While I was there, I told him about Sophie's reaction yesterday, and he was VERY concerned. He said because of the severity of the reaction, and the fact that her reaction was a 3-system reaction (respiratory/digestive/skin), it was anaphylactic and we were lucky that she didn't go into anaphylactic shock. Apparently we should have called 911 and had an ambulance come to give her a dose of epinephrin. I called the nurse and she didn't seem as concerned as I was, but now we know, and it will be good to have an epipen on hand. Sophie is really too small for the epipen dose, so we should only use it on her in life or death situations--we should first call an ambulance because they can dose to her specifications. Anyway, we are just grateful that yesterday ended happily and that we now know more about allergic reactions. Mike has HIS appointment with the allergist next Wednesday afternoon--we are all becoming regulars there.

Spencer has had a bit of a rough week. He has been really clingy to me and wants me to carry him up and down the stairs all the time. It's a little uncharacteristic of him, and it makes me just a little paranoid. I'll be glad to get the mid-November scans done so that we know for sure what's going on inside of him. It's hopefully just a stage he's going through--heaven knows he's been through enough this year to warant a few insecurities/clingy times. He wants to fall asleep by me on my bed every night. Or else have me lie on the floor next to him while he falls asleep in his bed. Last night I tried to be firm and make him sleep in his bed without me in there. He cried hysterically until he fell asleep from exhaustion. I felt terrible--I'd go in every few minutes and calm him down, but every time I left again he'd start sobbing again and yelling, "Momma! MOM! Mommy!" It was not a fun evening.

It's a really difficult issue for us--disciplining him. I don't know how strict to be with him. I don't want to totally spoil him rotten, but at the same time, I know that he has a lot of special needs right now that we want to make sure we meet. He is such a picky eater, and I have no idea when it's from the chemo and when it's just him being a stubborn 2 year old. And when he wants to be carried around, is he really tired or in pain or does he just want a ride. It's hard to lay down the law with him when so much is uncertain or unknown. (sigh) Hopefully once we get a little beyond chemo things will become clearer. Is that just a pipe dream? :0)

Well, I need to go to sleep. I'm really feeling the mixed emotions of coming off of chemo. I'm so excited to be done, and so scared to be done. It's so hard to go to the hospital all the time, and such a security blanket at the same time. I never have to worry very long about any little thing that's going on with him right now--every sniffle, bruise, cough, ache and pain is addressed within a day or two, because we go in that often. I don't know what we are going to do when we only have to go in once a month--with our time and our energy and our worry. It will be an adventure, I'm sure.

I'm also going through a lot of homesickness right now. Fall is such a beautiful time back home in Utah and Idaho. I miss the crisp mornings and the brilliant oranges and reds and yellows on the bushes and trees. I miss the mountains that get their tops dusted with snow every now and then. I miss the cold rains and the occasional snow for Halloween. I miss sweater weather--I LOVE to wear sweaters. It's so hot and humid here this week that even my pre-dawn runs with my friend Joy have been pretty miserable. We've been training for a half-marathon, and I was hoping for some cold weather runs, but they have been almost non-existent this year. I miss Halloween with family. My mom makes homemade donuts and we have cider or hot chocolate and donuts on Halloween. I'm glad that my parents are coming for Halloween this year. Maybe that will ease my homesickness. They are coming on Saturday and will stay through Spencer's chemo next week and then into the next week for Spencer's birthday. We are all really excited to have Grandma and Grandpa Sorensen at our house. Annie is counting down the days.

Anyway, enough of my rambling. I really need to go to bed. Thanks for checking on us. We really appreciate all the thoughts and prayers that we get regularly. Thank you.


Shauna

Tuesday, October 19, 2004 7:21 AM CDT

UPDATE (1:30 pm): Well, we just had a little Jones-style adventure that I have to share. We went to a friend's house today. A group of women from church and their kids get together once a week and try to learn or practice a skill. Today was cupcake decorating. It was really fun for everyone. The friend who did the demonstration shared her famous (at least around church) recipe for butter cream frosting. It involves several egg whites. The kids, of course, all wanted to taste test, and I gave each of my kids a cupcake to eat outside. Sophie and Spencer both brought me their cupcakes back half-finished, which I thought was odd, but didn't really analyze.

A while later, I saw Sophie again, and her eyes were watering, nose was running, and she was rubbing her face, which was quickly becoming covered in hives. I realized she was having an allergic reaction to SOMETHING, and tried to wash off her face and hands, meanwhile, she was getting worse and starting to fuss. Joy (my neighbor) took Sophie while I went to get Spencer and Annie to leave. I started to walk away and noticed that Sophie was acting pukey, so Joy took her out on the step and she started vomiting over the side of the railing.

Luckily, my friend who was hosting today's activity had benedryl, which I tried to give to Sophie, but she was still queasy and didn't want anything. Her eyes were swelling and red and her nose was getting more and more congested. The hives had spread to her neck by this time, so we hurried to the car and I used Joy's cell phone to call the pediatrician's office and then to let Mike know. I got her benedryl dosing information and gave Sophie half a dose on the way home, and then when we got home, gave her the other half. I drew a bath to wash off her skin when I noticed that Spencer was also developing hives on his face and head. That's when it dawned on me--I KNOW Spencer has an egg allergy. It was the frosting on the cupcakes!

By this time, Mike had come home, and he gave Spencer a dose of Benedryl, and then we bathed everyone good. Sophie was sneezing like a maniac over and over and over and the hives reached half-way down her back before the Benedryl kicked in and finally got rid of them. She is sleeping peacefully now. Spencer's hives are also gone (his was a much milder reaction). I have an appointment for Sophie at 4:00 this afternoon with the pediatrician. I'm going to bring up the subject of epipens for the kids. Just another day of keepin' up with the Joneses. . .

Spencer's counts at the clinic yesterday were high--a little TOO high. His white counts were 64.3 (normal is 4-10). Not good, but Nurse Jennifer said it could be the neupogen he's been getting this week and to just watch for fever or other signs of illness. He had a high count once before, but it was only 25.2. I guess we just keep an eye on him.

I (Shauna) had a nice talk while we were at the clinic yesterday with Colleen, Garrett's mom. She talked me through some of the issues of coming off of treatment and told me about what her experience was like when Garrett finished chemo. Garrett was also a Stage 3 Rhabdo patient. Unfortunately, he relapsed about 5 months off of treatment and is back to "on-treatment" status. They are a wonderful family, and I'm sure that Garrett would appreciate any words of encouragement in his guestbook that you have for him. Colleen also loaned us a "Walking With Dinosaurs" video that is a BBC documentary series on dinosaurs. It's computer generated images the whole time and they are very realistic. Spencer LOVES it! We watched part of it as a family last night and Spencer and Annie were both enthralled.

Spencer doesn't have to go back to the hospital again this week, unless he runs a fever or has other issues. Before we left the clinic yesterday, I made appointments for every morning next week for his Topotecan/Actinomycin-D/Vincristine treatment. As the receptionist was getting all the appointments, I said, "It's our last chemo." All of the receptionists got very excited for us, and one (Shea) said, "We are going to have a big ol' dinosaur party to celebrate." A new receptionist kind of laughed, and Shea said, "You obviously don't know Spencer. I'm serious. We're having a BIG OL' dinosaur party." I'm so excited to be done with chemo, but I really will miss all of our friends from the clinic. There are so many wonderful people there, and although we'll be celebrating the end of this chemical nightmare, we'll all be very sad to lose our frequent contact with the doctors, nurses, receptionists, etc. that we have come to know and love.

Well, I need to go get started on the day. Thanks for visiting us.

Shauna

Sunday, October 17, 2004 7:10 PM CDT

Hello, all. It's Mike here, and I have an important announcement to make:

We are going to build a circus in our backyard.

At least, we will if Annie can convince us that its a good idea, and she can be quite persuasive. I've already been through all of the reasons why it would be impossible for us to build a circus in our yard: too expensive, not enough room, against HOA policy, etc, but Annie doesn't seem to think that these are insurmountable problems.

Me: "Where would we get all the animals?"
Annie: "At the store."
Me: "Elephants and tigers and giraffes? Those cost a lot of money."
Annie: "Well, we could just EARN the money..."

She's very persistent. We'll let you know if anything develops. :)

Spencer is still coughing and sniffling. He stayed home from church with Shauna and Sophie, who are also not feeling quite up to par. Spencer has been very clingy with Shauna, too. We held church choir practice at our house this morning (Shauna is the piano accompanyist) and he was not happy to be anything other than the sole focus of Shauna's attention. I'm not sure what it is.

We are getting really anxious to be off-treatment (October 30th!). I keep telling myself that we're not out of the woods yet, but even so, it's a milestone that we've been looking forward to for a long time. I'm excited to see him grow hair again. He's been bald for the better part of a year now --it's hard to imagine what he'll look like.

I think we're going to round up the kids for bed soon, so I'm going to sign off. Thanks for visiting.

-Mike

Friday, October 15, 2004 7:28 PM CDT

Shauna here. Spencer got his flu shot this morning. Yesterday when we went into the clinic, his counts were coming up. His whites were 3 something, and his reds were 9. Today he's pretty bruisy. I'm starting to worry that we are going to end up in the green unit for a platelet transfusion this weekend. I guess we'll see.

So, he had a reaction to the flu shot. It wasn't terrible, but he has an egg allergy, so we were watching for one. He got the flu shot last year and was okay, and I didn't notice this year's reaction right away. We got home and he tried to eat some ice cream, and started choking because he couldn't swallow it. He got really mucousy and a little wheezy. So, I gave him some benedryl and he took a good nap and woke up fine. He was pretty annoyed that I had to give him his neupogen shot, too. Two shots in the same day--not very fair. But, we don't have to do neupogen over the weekend, and hopefully next week his counts will be on the rise.

This weekend is the Father/Sons outing for the church at Ink's Lake. Mike and Spence opted not to camp out tonight, but Mike is going to take Spencie up in the morning for some of the festivities. Annie is already weepy about the fact that Daddy and Spence are leaving. She was doing pretty well with separation until this week's hospital stay. Now it's a trauma every time any one goes anywhere. (sigh) We are counting down the days to the end of treatment.

I hear Sophie crying up in her bed. I'd better go. Hopefully we'll manage to avoid a second hospital admission for this week, but if Spencer's bruising isn't better tomorrow, we'll probably end up going in.

Thanks for checking in on us. We appreciate your thoughts and prayers.

Shauna

Thursday, October 14, 2004 11:39 AM CDT

So, today is hectic once again. This morning, Mike, I (Shauna), Annie, and Sophie went and got flu shots. Spencer was scheduled to get one today, too, but I asked Dr. Sharp yesterday before we were discharged if he could still do it, and he said to hold off a few days to make sure his counts are coming back up. We are heading in to the clinic for a 2:00 appointment this afternoon. I'm hoping that he doesn't need platelets, but yesterday when the nurse deaccessed him, he was pretty bloody, so I guess we'll just wait and see.

Annie was supposed to meet with her counselor, Becky, this afternoon, but we are rescheduling because of the craziness of the week and Spencer's conflicting appointment this afternoon.

Yesterday, when we got home from the hospital, Spencer had a big package from the Pirros in New Jersey. They are friends of Ian's family, and we met through Ian's caringbridge page. We want to thank Caroline, Juliana, and Katherine for the wonderful gift--they sent their collection of Land Before Time toys--a big box of stuffed toys, including Little Foot, Petrie, Sara, Chomper, Spike, and Ducky, and all the same characters in little wind up Happy Meal toys. Spencer was in 7th Heaven playing with them. They also sent gifts for Annie and Sophie, and we are overwhelmed at their generosity. THANK YOU, PIRRO GIRLS!

I'm telling you, our house is starting to look a little prehistoric with all of the dinosaurs in every room. Last night, Spencer had all of his new Land Before Time dinosaurs out, along with his huge new dinosaur from his nurse, Jennifer, and the big one that we got him for his birthday, and all of his plastic ones from the radiation oncology clinic. He was having the time of his life. I think he's pretty much forgotten about the hospital stay, what with all of the new toys to entertain him. We are truly blessed.

We also got the insurance claims worked out for good this time, hopefully. We finally found a helpful person from Blue Cross/Blue Shield (Sandra) who actually worked on the problem and called us back on it today to say that we had no responsibility on the claim and that it was worked out. Blue Cross also said they are working on the private room issue and we shouldn't have to mess with that claim again, either. So, I'm feeling better about life again--until next month when we get a bunch of new claims to fight. . .

I'd better go. I need to clean the house and do the dishes before we head off to the hospital again. Thanks for checking up on us. We appreciate you all.

Shauna

Wednesday, October 13, 2004 7:25 PM CDT

Well, this is just to say that we finally escaped the big house today (a.k.a.--the hospital, a.k.a.--Hotel California). Dr. Sharp finally sprung us around 2:00 this afternoon and we are HAPPY to be home! Spencer even voluntarily climbed up on my lap to get deaccessed just so he could get out, and then he practically sprinted to the elevators.

I'll fill everyone in on the details tomorrow. But for now--we SLEEP!

Shauna

Wednesday, October 13, 2004 8:51 AM CDT

Hi, everyone -- Mike here. I took the girls up last night around 6 to see Spencer and Shauna at the hosptial and found them playing with Allie in the book room. Shauna decided to stay the night there, so after playing together for an hour or so, I took the girls home.

Annie had a meltdown as we were leaving. We were quite a sight as we were saying goodbye -- all three kids were weeping and wailing. Annie was crying because she wanted Mom to come home with us; Spencer was crying because he thought Mom WAS coming home with us; Sophie was crying because she was pretty sure that something pretty awful was underway, given how much noise the other two were making.

I was having a hard time keeping my patience with Annie, who was crying nearly all the way home. When she started to settle down enough to speak intelligibly again, I asked her why she was so upset. She said, "I just want them to come home with us. I just don't like it when we have to split up our family." Pretty hard to be angry with that, huh? She curled up and fell asleep as soon as we got home. TIRED.

As for Spencer, we are waiting for him to be seen this morning, but I really think he'll be sent home today. With any luck, they'll be home by noon. If not, Shauna made me promise that I'd come bust 'em out.

Spencer and I were going to go on a church Fathers and Sons Campout this Friday, but I don't think we'll be cleared to go unless his counts climb back up quickly. Too bad -- I know he'd love it. We'll see. I think he will be going back in for bloodwork tomorrow morning.

Well, I need to get some work done. I'm working from home this morning until we figure out what's going on with Spencer.

-Mike

Tuesday, October 12, 2004 1:32 PM CDT

Hi Everyone. Mike here. It looks like Spencer is going to spend another night at the hospital. I swear, that place is like the Hotel Califormia. ("You can check in any time you like, but you can never leave!"). In spite of the great care that Spencer receives, it's a big fat pain to be stuck there when he's not acting like he's sick. Better to err on the side of caution, though, so we won't hold it against them. :)

He's doing pretty well this morning. His fever is pretty much gone -- at least for now. He's feeling just well enough to be cranky about having to sit in his hospital room and he lets everyone know exactly how put out he is every time they come in to get his vitals. He did perk up a bit when Shauna came this morning to take over -- he's become quite the mama's boy over the last couple weeks.

Annie and Sophie and I are hanging out at the house. I think I'm going to stay with him again tonight, so I'll probably head up there this evening after rush-hour. Hopefully we'll be able bring him home tomorrow (cross your fingers).

-Mike

Monday, October 11, 2004 7:50 PM CDT

UPDATE: (9:26am) Well, Spencer has already had his first visitor. Nurse Jennifer stopped by this morning bearing gifts. She brought him a big red stegasaurus and a froggy balloon. Spencer was, apparently, pretty cranky at the time, but I just talked to him on the phone and he was telling me all about his red dinosaur, so I know he loves it. He's just feeling lousy still. Dr. Lockhart came by and said they would start him on fluids and antibiotics and see how he does today. His counts are so low that they have to be extra cautious. So, I'm off to the hospital to relieve Mike for the day so he can work. We'll update more tonight.

UPDATE: (8:53am on Tuesday) Mike and Spencer spent the night at the hospital. They drew blood, but other than that, not much has happened. They haven't even seen an oncologist yet. Spencer's fever responded to Tylenol and this morning was only 98.9. I'm waiting to hear from Mike anything new. . .

UPDATE: (9:50pm) Spencer's fever spiked to almost 102 degrees, so Mike just left with him to head to the hospital. We'll keep you updated.


What a day! Mike took Spencer to the hospital this morning for blood work, and, sure enough, he needed blood. His hemoglobin was was 7.0, his white cells were 0.2, and his ANC was 102. Not good. So, we continue neupogen and he got red blood cells. Mike stayed until lunch time, and then I came and relieved him for the afternoon. Spencer was NOT in a good mood today. He developed a cough over the weekend and he was running a low grade fever all day today. And this evening, it's not so low-grade. It's about 100.9, so we are watching him. If it goes up to 101.5, we have to call the oncologist and might need to take him in. We're praying it stays down and goes away on its own. So, between the illness and the low blood counts, Spencer was feeling less than chipper today. After I arrived to relieve Mike, Spencer climbed up on my lap and went to sleep, which he hardly ever does at the clinic anymore, so I know he wasn't feeling well.

After the blood transfusion started, he did perk up enough to play some with Allie, who was there volunteering today because it was a school holiday. We brought the dinosaur book from Jennifer, and he looked at it some, but mostly he sat in his chair or on my lap and didn't do a lot of anything. Poor kid. He was nice and pink when he left, but he's still lethargic and icky. I hear him coughing upstairs now. I hope this passes soon.

Mike and Spencer left about 8:20 this morning, and Spencer and I got home a little after 4:00 this afternoon, so it was a full day in itself. Then, I made the mistake of opening the mail. There were two bills that I fought EXTENSIVELY last month, that were supposed to be taken care of and not our problem anymore, and the two same bills showed up again this month accompanied by nasty notes saying that we had ignored the account and it could go to collections. I was FUMING, and that's putting it mildly.

And then when I called on them, they didn't have good records of our conversations last month and so I had to start from scratch all over again. And by the time they could direct me to who I needed to speak with, the office was closed for the day. AAUUUGHHH! If the balances were even our responsibility, it wouldn't be so frustrating, but it's stuff that SHOULD be covered 100y the insurance and there's just mess ups all over the place on both sides and I'm expected to be the go between. It's really draining to feel like you are right, but because you are just one person fighting such big entities, you aren't heard. So, tomorrow, the battle begins anew. . .

I just learned that a little girl that we knew from the clinic passed away a few weeks ago. Alexandria was three years old. I saw her for the last time back in June, right before they were heading to Dallas for a bone marrow transplant. Her mother asked us to pray for them. Mike and I were talking about her over this past weekend, wondering how she was doing. I've been seeing lots of sadness in cancer in the past few days. I have a good friend who is losing her father to cancer this week. And a caringbridge child that we've been following, Connor was deemed "terminal" this week. It's so hard to see. . .

Well, I'd better go check Spencer's temperature. Thanks for checking on us and for keeping us in your prayers.

Shauna

Sunday, October 10, 2004 7:15 PM CDT

Happy Anniversary to us. Well, we're back. Mike and I had an incredibly nice weekend. We did all sorts of things together that we both like to do but never get to because we have children. We played racquetball, went to a movie, ate really good food at fun restaurants, went shopping at the outlet malls in San Marcos, worked out TOGETHER in the hotel's exercise room, went down to the pool, walked places, laid around, talked, stayed up late and slept in late, and generally had a wonderfull time. We've decided that we can't ever forget that we have kids--it's too much of who we are now, but we could almost forget about cancer for the weekend.

We had a good time reminiscing about the last 7 years. We have had quite the adventure together. In the past 7 years, we have moved 7 times--5 were in the first year and a half. Everyone but Mike has been hospitalized, and everyone but Sophie has had surgery. We've been through three hyperemitic pregnancies, 2 broken bones, a bout of postpartum depression, and a cancer diagnosis. And Mike and I have come through it all as good of friends as ever, which says a lot, I think.

Last Christmas, Mike and I decided not to spend a lot of money on each other for gifts, but to write letters to each other as our gift. Mike was a little slow at finishing his letter, he got most of it finished before Christmas, but the finished product wasn't done until around the 18th of January, a few days after Spencer was diagnosed with cancer. Mike's letter from Christmas Eve finished off with a sentence about what a crazy life we'd had together, and then he picked up mid-January with the following:

"The next sentence was supposed to be something like, "But I think we have a little bit of smooth sailing ahead of us." Are we EVER going to have smooth sailing? EVER? I don't know. Maybe we should just be content and make the best of the choppy waters that the Lord has given us. He rules the winds and the waves, after all, right? I know he can calm this storm, too."

And that pretty much sums up our lives together. We have had to turn things over to the Lord time and time again and He always makes more of us than we could make of ourselves. This year of cancer has definitely been a trial. We've had lots of hard and discouraging things happen. But, shining brightly amid the darkness are the lights of joy and cheer and kindness that have come to us all along the way. We have come together as a family and as a couple and have met countless wonderful and inspirational people along the way. Our marriage and our family have been blessed by all of you and we appreciate your love and support.

We've been making a list of all of the kind things that people have done for us this year, and one of these days I'll post it here, but brace yourselves, the list is HUGE and not even conclusive. We are truly grateful, though, and hope you all know how much we appreciate you.

Well, I'm off to do a little more anniversary celebrating before bed. Tomorrow is back to the clinic for blood work and maybe a red blood cell transfusion. We'll keep you all posted.

Shauna

Thursday, October 7, 2004 9:00 PM CDT

**I ADDED NEW PICTURES TO THE PHOTO ALBUM**

Today has been pretty busy. Spencer's Speech Therapist came for a visit, followed by the Early Childhood Education team from Round Rock ISD. They did an evaluation of Spencer, and he qualifies for services for his delayed speech. They think his speech is about 6 months delayed, which isn't bad considering he wasn't saying ANYTHING last year at this time. He was a little overwhelmed with the house full of specialists, but it went pretty well, nonetheless.

All the specialists left in time for Annie's counselor's arrival. Today Becky talked to Annie about the fact that she only has 3 or 4 more visits left. Annie insisted on 4, so 4 it is. Annie also told me after Becky left, that we will need to have a party on the last day that Becky comes. She's already planning the festivities.

I (Shauna, by the way) have had some kind of a bug the last few days. I have felt pretty lousy, but today I'm feeling a little better, so hopefully I'll be back up to par for our Anniversary celebration this weekend.

This evening, Jennifer (Spencer's nurse) stopped by with a present for Spencer. It was a book called, "How Do Dinosaurs Get Well Soon." VERY CUTE! My favorite is the illustration on the cover that shows a doctor trying to look in the dinosaurs mouth, and the dinosaur is folding his arms defiantly and looking the other way with a very shut mouth. It's like deja vu. Jennifer read it to him a few times, and then he showed her his new BIG daddy sharptooth and they played dinosaurs on the living room floor until she had to leave. He was CAAARAAANKY that she left. He threw quite the tantrum, and then after she left, he sat on the floor saying, "I want Je-fer! I want Je-fer!" I keep trying to tell him that he'll see her on Monday, but it doesn't seem to ease his pain much. He sure loves his nurse, and she sure spoils him!

Tomorrow, Mike is taking the last half of the day off and we are heading out for a weekend of fun. I'm a little worried about Spencer. He is such a mommy's boy these days, I mostly worry about him going to bed and sleeping with us gone. I know that he will be well taken care of, but I also know that I'll worry about him.

Well, Spencer is sitting on the floor reading his dinosaur book from Jennifer, and it is way past his bedtime, so I'd better go head him upstairs for the night. I got some really cute pictures of Spencer and Jennifer together tonight, by the way. I'll try and post them before we leave tomorrow. Thanks for checking on us and for keeping us in your prayers. We are grateful.

Shauna

Wednesday, October 6, 2004 7:39 AM CDT

Spencer had a rough round of chemo this time. He was really nauseated Monday night and Tuesday. He also woke up Tuesday with really puffy eyes that didn't want to go away. I called Jennifer, his nurse, and they sent extra doses of Zofran and kept him on fluids 3 extra hours. Even once he was off of fluids, we've kept him accessed to give him extra zofran for his nausea. I (Shauna) will deaccess him this morning when he gets up. He is starting neupogen shots this morning and will continue them the rest of the week, but we aren't scheduled to go back in until next Monday for blood counts, so hopefully we'll get a week at home.

Today, Annie has ballet and Spencer gets to go to a birthday party for his good friend Taylor Nemelka. Mike is taking Spencer, and my neighbor Joy is giving the rest of us a ride to ballet because our van is in the shop for repairs. It's either the battery or the alternator--the jury's still out on which one. Auto Zone tested it and said it was the alternator, but the place we took it to to be fixed is now saying it's the battery. Ahh, the joys of car ownership.

Well, I need to go get the kids fed and ready for the day, deaccess Spencer, and give him a shot of neupogen. Just another day in the life of a cancer family, right?

Shauna

Monday, October 4, 2004 7:51 AM CDT

UPDATE (3:00pm): We are home and hauling the backpack iv around. Today went pretty smoothly and faster than I (Shauna) expected it to. Spencer watched three Land Before Time movies and played dinosaurs pretty much the whole time. Annie painted pumpkins, decorated a cowgirl hat, made a book, and generally entertained herself with "projects" the whole time. He's on a higher flow of saline, though (100 mL/hr), which will mean lots of diaper changes in the night.(sigh)

p.s.--Spencer will turn three years old on November 3rd. We are very excited, because not only does it mark the day of his birth, it will also be a celebration of the end of chemo for Spencer--his last chemo is a week long VTC treatment October 25-30. What a party!

It's been a busy weekend. We had our neighbors' kids this weekend while their parents rode their bikes in the MS-150, a 2 day cycling event to raise money for Multiple Sclerosis. The kids had an incredibly fun weekend--their Kenneth and our Annie are the same age, and their Daniel and our Sophie are just a few months apart as well, so they had bulit in playmates and had a ball, playing and having "sleepovers" every night, and Mike and I survived with our sanity intact, and Joy and Steve (our neighbors) biked 150 or so miles from San Antonio to Corpus Christi and are still moving today, so I'd say the weekend was a smashing success! And best of all, this coming weekend, Mike and I are returning the favor and leaving our kids with the Laytons while we go celebrate our 7th wedding anniversary! We are really excited about that.

Today is the beginning of Spencer's last VAC treatment. It will be a long day, because we have to get his fluid levels up before we can start him on the chemo, which always takes a while. I (Shauna) get the fun of sitting in the clinic all day, but I'd still choose my day over Mike's--he's, as I type, headed to get a root canal. It's a close call, but I think my day is looking slightly better. :)

I have to go get the girls up so that we can head to the hospital. Wish all of us luck!

Shauna

Thursday, September 30, 2004 3:48 PM CDT

I (Shauna) woke up this morning and half thought that this whole year had been some caaaaraaaaaazy dream I'd had. I wake up to workout before anyone else is up, so in the quiet of the morning, before I was fully awake, I almost forgot the reality that is our life. I sat down at the computer and Spencer's caringbridge page was pulled up and it felt surreal to see that this is really my life and not just some messed up dream my subconcious had created in the night. It was a weird experience.

All too quickly reality returned, though, and we headed to the hospital for blood counts. Spencer didn't need a transfusion! HOORAY! I was relieved, but Spencer was PUT OUT that he didn't get very long to play in the "fishy room." He was in a bad mood for the rest of the morning as a result. We were going to go visit Garrett, who is in the Green Unit for a week-long chemo, but Spencer was throwing such a fit to be leaving, that I didn't dare.

We DID stop at Skippy's Hideaway (the hospital gift shop) and pick up an early birthday present for Spencer. Jennifer, his nurse, told me that there was a huge stuffed sharptooth (T-Rex, for those of you non-Land-Before-Time Buffs) that she thought he would like, but wasn't sure if he'd be scared of. So, I took him to the gift shop thinking I'd see if he liked it, and then sneak it home at some future date. Well, he LOVED it, and I realized that there would never be a time in the next month that I could SNEAK this monstrosity home without him seeing, so he got his birthday a little early this year. I'll have to post a picture of it soon--he loves loves loves it. His nurse knows him well! :0)

We got home and my neighbor called and told me that another friend's 1-year-old daughter was admitted to Children's this week with seizures, so she and I and the kids turned around and headed back for visits. We stopped by Garrett's room this trip. He and Jacob were playing a game with a counselor.

Spencer and Sophie were both traumatized to be in the Green Unit, and Spencer REFUSED to go in Garrett's room. I think he thought it was for him and he was not about to go. It makes me feel good about our choice to do his week-long topotecan treatments out-patient. Sophie was very clingy and cried every time I stepped away from her. I don't know if she remembers HER stay in the hospital, but I'm thinking she at least remembers one or two of Spencer's stays. They settled down enough to let me visit with my friend for a while, but they were both happy to get out of there when we left.

We got home just in time for Annie to meet with Becky, her counselor, who just left. It's been a hectic day, but it's starting to slow down. Sophie's napping again, and Spencer's playing with his "Big Daddy Sharptooth," and Annie's doing arts and crafts time. I'd better go. Thanks for checking in on us.

Shauna

Tuesday, September 28, 2004 7:39 AM CDT

**More Day Out with Thomas the Tank Engine Photos in the Photo Album**

Dinner with Allie's family on Sunday was so much fun. They have three kids, so each child had an individual babysitter. Mike and I actually sat and visited the whole time, which was wonderful! Spencer had a ball playing with Allie. . .actually, it was more like bossing Allie around, telling her what to do and where to do it. Good thing Allie doesn't seem to mind too much! :) Annie liked the dogs and cat and had fun chasing Michael (Allie's younger brother) around with a dinosaur and playing with Emily (Allie's sister). Sophie also got held a lot and loved running free through the house. Dinner was delicious and now Mike and I know how Allie turned out so fantastic--her whole family is the same way.

Monday was back to the grind of doctor's office visits. In the morning, I took all three kids to the hospital for Spencer's vincristine and blood counts. He's neutropenic and is back on neupogen this week. His white blood was 0.7, his reds were 8.1 (barely avoided a transfusion), and his platelets were 39 (avoiding another transfusion). I was happy that we kept him home from church Sunday. We debated and then decided to keep him home. His ANC was 280, so we will be staying home again this week.

He also is now on anitbiotic (augmentin) for his knee. Two weeks ago, he fell and scraped it on the sidewalk and it has not healed and is red and swollen and very tender to the touch, so hopefully the antibiotics will clear it up. Dr. Sharp also listened to his lungs and said that they sounded a little crackly until Spencer coughed, and then they sounded clear. So, we'll just continue to watch it and hope that it improves soon.

We got home in time to grab some lunch and head back out to the allergist with Annie. Mike worked from home in the afternoon so that Spencer could stay safely at home, and Sophie spent the afternoon at her friend, Daniel's, house. (My friend and neighbor Joy's house). Annie's appointment was at 1:45, and it was almost three full hours there. She had skin tests done, which went about as well as when she had her blood drawn a few months ago--TERRIBLY! It took four of us to hold her down and she screamed and thrashed and yelled, "STOPPIT! STOP!!!!" the whole time. Then, she had to wait while her back itched and hived so that they could tell what she was allergic to. The only thing that kept her from scatching her back to death was the threat that if she did it, they would have to start over again with the skin test. She didn't touch it once!

So, she's allergic to mesquite trees and some weeds, and she was VERY excited to learn that she is NOT allergic to cats and dogs. The doctor thinks she probably has asthma. He asked if she wakes up in the night, has bad dreams, snores, mouth breaths, has stomache aches--he pretty much described her to a T. She is now on nasal spray and Zyrtec and we go back in three weeks for a follow up.

After the allergist, I went and picked up Spencer's antibiotic and dropped off Annie's prescriptions and headed home. I was totally WASTED. There is something about doctors' offices that completely drain me of all energy. So, after the kids went to bed, so did Mike and I. Today should be a quiet, at-home day, so I can hopefully finish painting the kids' room, which I started several days ago and need to finish.

Thanks for checking in on us. We appreciate you all!

Shauna

Sunday, September 26, 2004 8:11 AM CDT

We had such a fun FUN time at our Day out with Thomas the Tank Engine. Every one of our kids enjoyed the train ride immensely. Spencer kept saying, "It's a BLUE TRAIN!" They waved at every car/person/plant they saw! Annie got her picture taken with Sir Topham Hatt, and she and Spencer went down an enormous inflatable slide, and Annie got a balloon "magic wand" from a clown who was making balloon figures. On our way home, we stopped at Wendy's and picked up lunch for the kids. All in all, it was a very memorable day. I'll post pictures in the photo album.

Spencer has developed a cough. We're hoping it's just allergies, but it's starting to sound croupy, so I'm a little concerned. We go in tomorrow for blood work and vincristine, and I'll feel better once someone listens to his lungs. My nightmare is ending up in the hospital on oxygen again. That was awful!

Today is church and dinner with the Booths. We are looking forward to both. Thanks for checking in on us and for your prayers.

Shauna

Thursday, September 23, 2004 8:10 AM CDT

I (Shauna) added new pictures yesterday, by the way. We had a good day yesterday. Spencer came with me to take Annie to dance and he was quite the hit with the other moms. I think it's the bald head, it just instantly endears him to people. Either that or the fact that he's just so darn cute! He had a little bean bag cat toy that he was tossing back and forth between all of the moms there. It was pretty cute.

The face to face with the school district went okay. They have a huge play room that Spencer was very distressed to leave when we were done. The evaluation is October 7th to see if Spencer qualifies for services. He has made such huge leaps in language lately, that I half-hope he doesn't qualify. It would be great for them to tell us that he's not far enough behind to need their help. We stopped there on the way home from Annie's dance class, so Annie was with me, too. She walked into the play area and stated, very matter of factly to the ladies there, "I'm an artist." Then she went to find the paper and markers and began creating things. She really is an artist--she is such a creative thinker. He latest art projects have included gluing her crayons to paper in different arrangements. I told her that if she glued all of her crayons to her art, she wouldn't have any colors to color with, but she assured me that she is saving her best colors to use to color. She certainly thinks outside the box.

This morning, everyone is sleeping in, so the house is quiet. Once the kids get up, we are going to go on a little trip to Barnes and Noble. They have a fun train set there and a kid section that is awesome. So we are going on a field trip to read books and play with the train, and then this afternoon, Annie's counselor is coming to talk to her.

Well, I just heard Sophie, so the silence is over. Thanks for checking in on us. We really appreciate everyone's support.

Shauna

Wednesday, September 22, 2004 9:13 AM CDT

Spencer has been tripping a lot this week. He's never had that much trouble with the vincristine until the last month, but I can tell now when he's had it because he falls down a LOT! Poor kid. Vincristine causes foot drop and other such problems. When one of the doctors checked his knee reflexes the other day and he had none. It should go away after a while of being off of the vincristine, but it's really hard right now. Every time he falls, I say "Spencer, are you okay?" "I otay, Mom!" and he hops back up. At least he's resiliant, right?

This week is turning out to be pretty busy, even though we don't have to go back to the hospital until Monday. Today is Annie's ballet class, and then from there we go straight to Round Rock ISD to have a face to face with Early Childhood Education about Spencer's continued therapy after he turns three. Should be informative. Then, we are feeding the missionaries tonight before I head to Relief Society midweek activity at 7:30.

Last night, Allie's (Spencer's volunteer friend from the hospital) mom called and invited us to dinner on Sunday. We have never met the rest of Allie's family and we are so excited to get to know everyone. If they are ANYTHING like Allie, they are awesome.

Saturday we are going to meet Thomas the Tank Engine. He's coming to Austin, and Annie is SOOO excited. I know that Spencer will love it, too, because he loves the Thomas the Tank Engine train set at the clinic. The hospital very graciously gave our family the tickets--we get a train ride and participate in various activities that promise to be lots of fun.

I just heard Spencer fall again upstairs. "I otay, Mom!" (sigh) Only 3 more doses of vincristine to go before the end of treatment! I'm counting them down!

Shauna

Monday, September 20, 2004 8:31 PM CDT

Well folks, I've finally arrived. That's right - I made the local news here in Austin today. Shauna needed a break after taking Spencer in almost every day last week, so I (Mike) took Spencer in for his chemo treatment today and KVUE (local news station) was there doing a story on Chilis Restaurant (they are donating 100f their profits today to a children's cancer research facility in Memphis, TN). They didn't actually interview me or Spencer, but they DID pan a shot of half of my backside!

They were shooting a little girl named Arianna who was painting a picture while she was getting her chemo. They started the shot by panning down her IV pole and then over to her and her picture. I was in the background to the right of her pole, bending over to get something out of Spencer's backpack. I didn't even realize that I was in the shot until Shauna saw it on TV ("Hey, Mike! Your butt's on the news!"). It wasn't exactly a full 15 seconds (of fame), so I'm pretty sure that I have some more coming to me at some future date. :) You can see Jennifer, Spencer's favorite nurse ever, in a starring role as the nurse in the clip, so you can all see what she looks like if you watch the clip on KVUE's website. (Click here and then click on the "Online Video" link about halfway down the article.

Spencer did very well today. Everyone there (at the clinic) keeps commenting on how much better he is doing with the treatment routine and the pokes and prods and general interaction. When we first started, he wouldn't let anyone near him, even to just take his temperature or is blood pressure. Now he doesn't even cry much when he gets his neupogen shot. He's definitely come a long way this year.

He got Vincristine (little chemo) and a red blood cell infusion, so we were there from 9 AM till almost 3. We saw Garrett there with his Mom -- they were there for all day, too. Spencer played with dinosaurs (what else?) and watched one of the countless "Land Before Time" sequels (what else?).

His counts are still pretty good, so Shauna took him and Annie to Chilis for dessert tonight. I stayed home with Sophie, who, as I type this, is crying to be let out of her crib. I'd better go and see if she pulled the classic wait-until-they-put-me-down-for-bed-and-then-poop routine. Have a good night, all.

-Mike

Saturday, September 18, 2004 2:04 PM CDT

**NEW PHOTOS ADDED**

YEEEEEEEEHAA! Another massive chemo week behind us! Spencer has been such a trooper all week, but by this morning, he was as sick of hauling his IV backpack around as we were. He'd start to walk away from it, stop, and look at me. Then I'd say, "Spencer, go get your backpack." Then he'd say very curtly, "No, Mom, I don't wannit packpack!" Or else he'd point at it and say, "MOM! PACKPACK!" That was my cue to pick it up and follow him all over the house. But, gratefully, he is off of iv fluids and sleeping soundly up in our bed upstairs. We all get so wasted from these treatments, by the end of the week, it's hard to even walk a straight line.

Yesterday morning on the way to the hospital, the traffic was really bad--stop and go. I think it was a little too much for Spencer's stomach. He was moaning and saying his tummy was ow. I felt so bad for him. He rarely shows signs of nausea, so I know he's totally sick when he's telling me about it. But, we got to the clinic and he got some more zofran, and sat and watched his movie until it kicked in, then was down playing on the floor. That child is so resiliant, I'm constantly amazed by his strength and energy despite all that his little body is going through.

Last night, Mike and I went and played volleyball at the church while Mike's parents got all three kids to bed. We had such a fun date night--we went out for dessert afterwards at Fridays. I was so tired, though, one of my friends kept saying, "You need to go check into a hotel, close the curtains, turn the a/c up, snuggle under the covers and SLEEP!" Ahh, now that would be a little piece of heaven, right there. I felt like I was moving in slow motion the whole time, but we had a really fun time and are really grateful that Grandma and Grandpa Jones were willing to take care of the kids for us.

When we got home last night, I went in to change Spencer's diaper. I took his blanket off, and he started taking in his sleep. It was SO CUTE! He was saying, "Spike" (one of the dinosaurs in "Land Before Time") "It's a fahtoo(sharptooth) It's a fahtoo." He's been watching Land Before Time every day this week at the clinic while he gets his chemo, and playing dinosaurs in his spare time. I thought it was cute that he was dreaming about it, too.

Today I had to go to an open house at the new church building in Pflugerville, so while I was gone, Mike, Grandma and Grandpa Jones, and the kids went to the park. They got some really cute pictures of everyone, so we'll have to start rotating them through the photo page.

We just finished week 33 of 42. We are counting down the weeks until the end. Perhaps we are overly optimistic about Spencer's continued remission, but we've decided that if he relapses we'll be devasted whether we fret about it or refuse to dwell on it, so we're choosing the latter. We are already looking forward to a huge celebration of thanks this Thanksgiving and are looking foward to life after chemo. Thanks for checking on us. Please continue to pray for Spencer--we really appreciate it.

Shauna

Wednesday, September 15, 2004 10:18 PM CDT

Mike and Grandpa Jones took Spencer to get chemo today. Mike's dad had never been to the clinic and so they had a boys' day out to get cytoxan/topotecan. Wahoo!

I stayed home and ran errands and Grandma Jones, Sophie, and I went with Annie to her dance class. It was very cute to watch her. She is so excited about dance and I'm glad that she gets to do this.

Spencer, Mike, and Grandpa Jones got home around 1:00pm. Spencer was in a pretty good mood. We, of course, had to have one Jones-style crisis this week. Spencer carries his IV bag around by himself most of the time, and he had come downstairs to stand next to me while I typed an email. I wasn't paying much attention to him, but I could see him holding his bag out of my peripheral vision. He out of the blue said, "Uh oh." I looked down and saw blood everywhere. He had caught the tubing on something as he hit the bottom of the stairs, and although he was still holding his iv bag, he had pulled the tubing apart and was bleeding out his end of the tubing, while the pump continued to pump saline all over the floor.

I quickly clamped the tubing that was connected to him to stop the blood and carried him into the kitchen. He had blood all over his shirt and shorts and his feet. It, of course, is toxic because he's on chemo. I got him in the kitchen and started cleaning him up when I realized that the pump was still going, and Mike's mom ran and got it and brought it into the kitchen, too. I got it turned off and everything cleaned up and reconnected and going, and then went in to figure out how to get blood out of my white carpet. Luckily, my mother-in-law is a genius and we used hydrogen peroxide to get the blood out and it worked like a charm. (sigh) She also got the blood to come out of his clothes nicely--whew. Just another day at the Joneses. . .

Spencer seems to be tolerating the chemo really well. The first few days he was pasty and mellow, but he's perking up a little today and has been eating--not quite as good as normal, but decently. We are half way through this week--YEEHA!

Well, I'd better get to bed before the alarm goes off to get up again to change his diaper. Thanks for checking on us.

Shauna

Tuesday, September 14, 2004 1:53 PM CDT

Day 2 of Topotecan/Cytoxan. Yesterday was, indeed, a full day. Spencer's fluid levels didn't get up to the right level until 1:00pm, so it was about 5:00 by the time we got home. My friend, Shauna (I know, what are the chances), brought her daughter, Taylor, to play with Spencer and brought us lunch. Spencer and Taylor are great friends, and it was a great diversion for Spencer to have someone new to play with for a few hours.

Spencer spent the rest of the afternoon playing with Claudia, one of the Child Life Specialists at the clinic. She is wonderful with Spencer and is good about finding things that he will like to play with and be distracted by. I had a really great talk with her. She had thyroid cancer as a 12 year old, received radiation, which caused osteosarcoma 9 years later. So, she is a two-time cancer survivor, and I was so impressed with her. She said she almost gave up on her career choice during her fight against osteosarcoma, because she wasn't sure she could handle it emotionally and mentally, but I'm so glad that she decided to continue. She is awesome. She didn't realize that Spencer was also a sarcoma patient, and he is taking some of the same chemo drugs that she took as a chemo patient. It was so nice to talk to her, and Spencer loved playing with her. Those child life specialists do such a great service for these kids, and I'm so grateful for all of them!

Today was shorter--we were done by noon. I'm totally wasted, though, and kept falling asleep sitting up at the clinc. In just a few minutes, Duvette--Spencer's Early Childhood Intervention Specialist--will be here for a visit, so I'd better go. Thanks for checking in on us. We appreciate the guestbook messages and the support that you give us.

Shauna

Saturday, September 11, 2004 6:06 PM CDT

Shauna here. This week has been pretty quiet. Yesterday, my friend Joy and I cleaned out and groomed the bushes in front of our house. It was majorly overdue. Then, I had a Mom's Night Out. I was supposed to go to an official Mom's Night Out with Candlelighters, the cancer support group. But, as it got closer, I just couldn't bring myself to go, because I knew that even if the conversation wasn't about cancer the whole night, the thought of cancer would be. I know that I should have gone and part of me wanted to go and visit with the other cancer moms that I care about, but a bigger part of me just wanted to distance myself from cancer and the thought of cancer, so I went shopping by myself and got a pedicure and then Joy and I went to a church volleyball game at the Stake Center (a church building). We ended up playing volleyball until 11:30 pm and had SUCH a good time. I felt like the old me--the pre-cancer, pre-children, pre-responsibility me--and it felt really nice for an evening.

Today has been pretty hectic. This morning, some friends from church came to help us stain our back fence. We've been meaning to do it for months, and the ward had a service project and asked if they could help us with anything. So, the back yard looks much better--still some of the fence left, but much better. I had a church meeting to attend (Stake Relief Society Training), and then Annie had a practice for the Primary program tomorrow. The primary children are singing and saying parts tomorrow at church for the whole congregation. Annie's part is "Jesus died for me because he loves me." She is very good at saying it, and we are very excited to watch her tomorrow. We are all going to try to go to church as a family tomorrow.

Then, tomorrow afternoon, Mike's parents are flying in to spend the week with us, since Spencer has his week long topotecan treatment. Annie is very excited to see Grandma and Grandpa Jones and has been counting down the days until their arrival.

Monday is the marathon chemo day, where we spend half of the day getting Spencer's fluid levels up and the other half getting the first dose of chemo. It always wipes me out. But, it is our second to last week-long chemo, so that thought alone will sustain me, I think.

Thanks for checking in on us. We appreciate it.

Shauna

Wednesday, September 8, 2004 5:57 PM CDT

**New Photos Added**

Today has been a good day. I (Shauna) took Annie to dance class, which I found out when I got there, consists of the tap lessons the first half of the year and ballet the second half. Annie and one other first time student were the only ones in ballet shoes. Lack of communication on the dance studio's part, and I was afraid that Annie wouldn't be happy that she wasn't doing ballet, but she had a ball and we picked up tap shoes this afternoon, so she will be making noise with the best of them next Wednesday. It was very amusing watching the little girls try to follow the teacher's lead on some of the combinations they were learning. It was very cute. Annie was very excited all morning, and even more excited after the class was over.

I was sitting in the waiting area with the other moms. One of them was talking about her kindergarten aged son who came home from school and announced that he wanted to shave his head, cause some professional athlete had a shaved head. She was saying how no son of hers was going to be bald. I almost laughed at the conversation. I wanted to say, "Tell him to try chemo for a while, that should cure him of wanting to be bald." But, I didn't say anything.

My wonderful neighbor, Joy, took Spencer and Sophie while I took Annie to ballet, so we could enjoy the first day alone. Then, she took Sophie and Annie so that I could spend some quality alone time with Spencer. We curled up in the rocking chair and read books and then crawled around on the floor playing dinosaurs. It was really fun. He had a meeting with Duvette, our Early Childhood Intervention Specialist at 2:30. She was VERY impressed with his rapidly expanding vocabulary. He really is picking up words right and left. It's so nice to see him developing so quickly despite all of his medical demands.

I read Ian's page last night. Ian is our little friend from New Jersey who had rhabdomyosarcoma and passed away on Father's Day of this year. Every time I go to his page, I feel their loss so profoundly and at the same time feel immensely grateful for our success so far in this fight against cancer. I'm reminded of the frailty of life and find myself savoring moments with my children more. I think, too, of the parents of the children in the school in Russia and the grief that they are undoubtedly suffering.

Our family has been so blessed this year--I'm so grateful for Spencer's "delay en route." This year I have grown so close to that little boy. As we near the end of Spencer's protocol, Mike and I both find ourselves being more and more hopeful that this will be the end of this phase of our lives. Of course, there are no guarantees and if we are asked to endure it again, we will, but we are really starting to look forward to the future--a future that has Spencer in it--as a healthy, happy, loving little boy. Thank you so much to all of you who have supported us on this journey and who continue to support us with your prayers and encouragement. Thank you! Thank you! Thank you!

Shauna

Tuesday, September 7, 2004 12:08 AM CDT

This morning, I (Shauna) took Spencer to get his little chemo (just vincristine) for the week. We were in and out in just over an hour and a half, which I think is a record for us. Spencer's counts are slowly improving. His white counts are up to 1.8, which is still way below normal, but much better than last week's 0.3. He was in a very good mood this morning, playing catch with Nurse Jennifer and Mary, the Child Life Specialist. Best of all, we don't have to go back until next Monday, when we start the week-long chemo. That's almost a full week of home time. It's been a very long time since we've been able to do that, so I'm looking forward to it!'

We saw Garrett while we were there this morning. He is our friend who recently relapsed with rhabdo again. His mom said he is feeling very discouraged lately. If any of you have the chance, I'm sure some uplifting messages in his guestbook would help boost his spirits.

Tomorrow is Annie's first day of ballet class, and she is very VERY excited about that. Then Thursday she will meet with her Candlelighter's Counselor. I need to get the kids lunch. Thanks for checking in on us.

Shauna

Saturday, September 4, 2004 9:13 PM CDT

Spencer and I spent the day in the Green Unit (the cancer unit at the children's hospital) today. (This is Mike.) He had some really nasty bruises on his legs and arms, which means that his blood was not clotting well due to a low platelet count.

His platelet count was pretty low on Wednesday when he got his red blood cell infusion, but not low enough to infuse. But this morning the his bruising looked pretty bad, so we called in and arranged for check in to get an infusion of platelets.

We got there at about 11:00 and didn't leave until almost 6:00, so it was a pretty long day. And the infusion itself was only about 45 minutes. Everything happens in slow motion at the hospital, compared to our visits to the clinic. But in spite of the waiting, we have always been impressed with the nursing staff there. Chandra, the charge nurse is especially good and she remembered Spencer even though she's only seen him once since January.

Allie came to play with him at the hospital for a couple of hours, too, which Spencer enjoyed, as always. They played dinosaurs on the floor while I read, for the most part.

Spencer had a mild allergic reaction to the platelets, in spite of a pre-emptive dose of Benadryl -- about two-thirds of the way through the infusion I noticed a couple of hives on his little bald head. He started to wheeze a bit too, and his eyes were tearing up. They gave him another dose of Benadryl and then he was OK. The second dose knocked him out for the rest of the day -- he woke up briefly when Chandra de-accessed his port, but promptly fell back asleep once it was over, and has been sleeping ever since.

We got a letter from Make-A-Wish today, and they confirmed our trip to Disney World from January 8th to January 14th! I think Mom and Dad are even more excited about it than Annie!

That's all for tonight -- have a good weekend everyone.

-Mike

Wednesday, September 1, 2004 5:25 PM CDT

So, Mr. Spencer is rosy cheeked and pink once again. He got blood today, and he's a lot perkier. He seems to be feeling a little better as far as his cold is concerned. He played more today and sat around less. His counts are TERRIBLE, though. He had an ANC of 84. Remember, low is below 1,000, and critically low is below 500. So, we'll be staying home for the next few days. Hopefully, by Monday, he'll be on the rise again.

Annie kept herself occupied by painting picture frames and then gluing on beads for decor. She is such an artist. That girl could be the next Picasso, so watch for her.

We got home around 3:30 today, and are feeding the missionaries at 6:00. So, guess who's getting Domino's for dinner. :0) I'm really worn out and looking forward to turning in early tonight.

Shauna

Monday, August 30, 2004 8:13 AM CDT

UPDATE: Spencer didn't get blood after all. We are waiting until Wednesday for the transfusion. He is on Sudafed for congestion and an antibiotic (amoxacillan) to fight infection. He still feels yucky. Sophie is starting to get over her cold, so I'm praying that Spencer isn't too far behind her. Pretty much the entire time we were at the hospital, he was either on my lap or in a chair with his pillow and blanket watching a movie. We hope this cold is short lived.


Spencer is sick. He caught Sophie's head cold, which is now turning into a cough on top of it. Poor kid is miserable. He's very lethargic and has no appetite. We are going in this morning for red blood, which will hopefully perk him up a little bit. He looks and obviously feels miserable.

We just started getting his neupogen through a mail order pharmacy, so now we have a $72.00 co-pay for each round of neupogen. Very frustrating. I need to call the insurance company about it.

Well, I'm off. I'll write more tonight after the transfusion and blood counts and such.

Shauna

Saturday, August 28, 2004 10:25 AM CDT

Dora, Dora, Dora the EXPLORER! She's a super cool exploradora!

We had an awesome time at Dora Live last night! Sophie has come down with a nasty head cold, so Mike stayed home with her, and I (Shauna) took Annie and Spencer to go see the show. I was a little worried about Spencer's attention span, but he was mesmorized by the whole thing. He still is feeling not quite up to par from the chemo, so by the intermission he said, "I want to go home." But, he sat on my lap through the second half and especially likes Isa, the iguana that looks like a dinosaur to a 2-year-old. He sat watching in fascination as the characters dance and sang and played.

Annie, on the other hand, was not just a silent observer. She TOTALLY got into the show--was screaming answers at Dora and waving at all of the characters and singing along at the top of her lungs. It was SO CUTE! They got shiny stars on sticks to wave at certain part of the program, and Annie was on her tip toes waving it around so that Dora could see her star. It was such a fun evening for her, and I'm so, so glad that we went. It was a really wonderful evening, and I'm really grateful to Candlelighters for giving us the free tickets.

We got popcorn at intermission, which Annie thought was really cool. Spencer usually likes popcorn, but he's still got his chemo blahs and will take one bite of something and then make a face like it tastes terrible, and then ask for something else and do the same thing. He took a bite of popcorn, and that was it. We stopped for icecream at Cold Stone on the way home. Annie got her favorite--cheesecake icecream with gummy bears mixed in. Spencer took one lick and made that face, and he was done. Poor kid.

Speaking of which, he's hungry again, so I must go play the find-something-to-eat game. Thanks for checking in on us.

Shauna

Friday, August 27, 2004 1:47 PM CDT

Well, we survived another chemo treatment! Spencer did well. He was cranky through it, but who can blame the poor guy. We are all a little (okay a lot) sleep deprived from the nighttime diaper changes, coupled with a few nights of fierce teething from Sophie, but after some power naps this weekend, we should be all right as rain come Monday. They almost didn't start chemo on Wednesday. His ANC was only 687, and it is supposed to be over 750 for chemo to start, but they were hoping that the decadron (steroid) that they give him with his chemo for nausea would boost his white count enough to get him through.

Mike took him back in to the clinic today and his counts are holding. His red counts are low, but they gave Mike the choice of having the transfusion today or coming back in on Monday to do it. What do you think Mike chose? So, I (Shauna) will be taking Spencer in on Monday for the all day ordeal of a blood transfusion. I'm not bitter at all, though, so that's good. :0) Really, I'm sure Mike would have stayed and done his time today, if he hadn't needed to get back to work this afternoon--he already missed Tuesday for scans.

Today was also Sophie's 18 month check up. We are pleased to anounce that she is back on the charts for weight. She's a whole 20 pounds, 9 ounces! That puts her in the 5th percentile for weight and the 30th for height. Not too shabby for her. I still haven't figured out how we got a petite member in our family--she definitely doesn't have Mom's-side-of-the-family genes, that's for sure!

I think we are all going to need counseling after this year of chemo. I'm afraid the girls are permanently scarred when it comes to doctor's visits. As soon as we pulled into the Austin Regional Clinic parking lot, Annie started falling apart. "I don't WANT to go here! I don't WANT TO GO HERE!" I said, "Annie, you love Dr. Harvey, why are you so upset?" She cried, "I don't want them to take my blood or give me shots!" I had to tell her repeatedly that we were NOT here for her and that Sophie was the only one getting a check up today. She told Dr. Harvey and her nurse no less than four times that it was not her turn to be here, it was Sophie's.

Sophie, on the other hand, is convinced that the stethescope hurts after seeing Spencer react to it as many times as she has, and she sobbed through the whole check up. She kept reaching for the door, saying, "bye-bye! BYE-BYE!" She didn't even have to get any shots, but you'd have thought she had gotten a leg full, by the way she was carrying on. We were all glad to be done and out of there. What a morning!

Spencer got the go-ahead to go to the Dora Concert tonight, so we will be going together as a family. Annie is so excited. She keeps wanting to go right now. We told her that Dora won't be there until 7:00 and she has to be patient. Annie said, "Where's Dora right now? Is she at her house?" Maybe so. But, we are excited for this evening and a quiet weekend of naps and relaxation. Wish us luck on that one! :0)

Well, Annie has created a game that she thinks I'm really going to LOVE, so I'd better go play with her. Thanks for checking in on us.

Shauna

Wednesday, August 25, 2004 10:33 AM CDT

Mike here. Shauna just called me from the clinic to say that Spencers scans are CLEAR. They basically showed the same things that were in his previous scan, with no growth or change.

Spencer is getting "Medium Chemo" today, so Shauna will be there with him until mid-afternoon. He will come home on an IV bag that we'll disconnect tomorrow afternoon.

Shauna and I have both been much less anxious and stressed about his scans this time around. Of course, it's still a relief to hear good results, but we haven't been going mad waiting for them, which has been nice.

Thanks again for your prayers and encouragement.

-Mike

Tuesday, August 24, 2004 4:14 PM CDT

Mike here. As Shauna mentioned earlier in her update for today (below), I spent some quantity time on the phone today with Empire (our Health Insurance company) and various billing offices. I got absolutely nowhere on three separate issues. It was pretty aggravating. At one point, after having been on the phone for about an hour with a representative from Empire who was telling me that she couldn't help me and that I would need send a written letter of appeal, I said, "You know, it almost seems to me like this system has been designed to frustrate me to the point that I will just give up disputing improperly processed claims and pay the bills just to end the hassle." She said, "Yes, I can understand how you might feel that way..."

Of course, it would do me no good to yell at her--she's just doing what she's been trained and instructed to do. So at the end of the day, I've spent hours on the phone re-hashing some of the same claims that Shauna has been working on -- since January in some cases, and not only do I have nothing to show for it, I don't even have anyone to scream at. So instead, I just let out one of those long, exaggerated sighs, "Napoleon Dynamite"-style (funny, funny movie!).

Well, I don't write much here these days, and I don't want my whole posting to be a big angry rant, so let me echo Shauna in saying that overall, the scans today went well and we are both feeling calm about the results (which we are still waiting for, in case that's not clear). And as far as my experience fighting bills today, I can say this positive about it: I have increased appreciation for Shauna and the many, many hours that she spends every week making sure that we don't go broke paying bills that we don't really owe. I don't think she actually enjoyed watching me tear my hair out this afternoon, but I suspect that she did take some pleasure in the fact that I was able to understand what she has to deal with. :)

AND (more positive stuff), as I was sitting here typing, I got a call from Janell at Dr. Smith's office who is helping us sort out an in-network/out-of-network farce (I won't go into the details -- it's much too long). She has been very helpful and I think she might have actually made some progress for us. So, you know, silver lining, the cup is half-full, etc, etc, etc.

I would also like to echo Shauna's thanks to everyone for your prayers. We felt them today, and they were appreciated. We'll be sure to post as soon as we get the scan results.

-Mike

Tuesday, August 24, 2004 2:01 PM CDT

Shauna here. We survived another set of scans! This time, Spencer didn't have to drink contrast liquid, which was great, but he had to have anesthesia, which was not so great. He did really well, though. He woke up with a nasty cough from the tube down his throat, but that has all but disappeared. He also woke up with a bad case of the crankies, but he's napping that off as we speak, so all in all, I think we can count the day a success. We saw Nurse Jennifer in the parking lot as we arrived, and Spencer wanted to follow her, instead of heading to the imaging area, so he was a little mad about that, but he got to see her to be accessed and de-accessed, so he got a little Jennifer time, and we will be back for all day chemo tomorrow, so he'll get lots more then, too.

We are feeling really calm about the scans. We should find out the results either this afternoon, or tomorrow when we go in for Spencer's VAC treatment. We'll let you all know as soon as we do what the verdict is.

We came home to more insurance battles to fight. Mike spent a frustrating and fruitless hour and a half on the phone with our old insurance company. We just got letters in the mail today and yesterday stating that they are denying coverage on Spencer's topotecan because it's investigational medicine. Whatever. They paid for it the first round. I don't know why people can't get it together and just do their job right the first time! They still haven't received Dr. Sharp's letter of medical necessity, so hopefully that will be what straightens this $22,000.00 mess out. We'll see. . . And we are still trying to fight a few other messes (the assistant surgeon, and the nutritionist's visit, etc), but I don't feel like we're getting anywhere with anything. Sigh.

Tonight, Spencer's new speech therapist is coming again to visit, then tomorrow and Thursday are VAC days. Friday is Sophie's 18 month check up, and in the evening Candlelighter's (our Cancer Support Group) got us tickets to the Dora the Explorer Live concert. So, we'll be busy this week.

I'm off to have school with Annie. I'll try to get Mike to update today's entries with his own thoughts later on. We appreciate everyone's prayers today. It went really smoothly and we were really unstressed, considering. Thank you, and thanks to everyone who has signed Spencer's guestbook. It's such an uplift for us to read your words of encouragment and caring. Thanks for stopping by to check on Spencer.

Shauna

Saturday, August 21, 2004 7:12 PM CDT

Today has been a nice day. We got a lot of cleaning done around the house, and Spencer, Annie, and Sophie got a lot of playing in with Allie, our clinic-volunteer-turned-buddy. Spencer had such a good time. He played and played. They all did. They played dinosaurs and pretend and even played for a while outside on the swingset until Sophie and Spencer, who were both falling asleep, came in for naps. Then Allie and Annie had a picnic out on the swings and did some more swinging and then came in and read books before Allie had to leave.

Then, after naps, the whole family got in the car and drove up to Georgetown for frozen custard. On our way back, we stopped at HEB for milk, and Annie and Spencer got to ride in one of the little car carts. Actually, I shouldn't call it "little," because Mike was pushing the cart and complaining that it was bigger than our real car! :0) They had a good time.

Tomorrow we will all try to go to church together, which I'm really looking forward to. Sophie is old enough for the nursery now (YEA!), so she and Spencer will get to go together tomorrow. That should be really nice for everyone (especially Mom and Dad who get to attend the last two hours of meetings sans children for the first time in about 3 years!)

It was really nice to have just a fun, relaxing day today. It's good to get a little break before the busy-ness of next week sets in. Thanks for checking on us, and for keeping us in your thoughts and prayers. We really appreciate it!

Shauna

Friday, August 20, 2004 1:54 PM CDT

Yesterday, I (Shauna) took Spencer in for blood work, and amazingly enough, he didn't need ANYTHING. His red blood cells were on the rise, and so were his platelets. His whites were 2. something, but he isn't on neupogen this week, so that's pretty good for Spencer. So, we got to come home around lunch time, which was great.

Today, his new Early Childhood Intervention Speech Therapist came over. Her name is Meredith and she seems really nice and had some good suggestions for helping Spencer's speech. Annie has a hard time with all of Spencer's therapists coming over. He has so many people that focus on him and come to see and work with him, I think Annie feels left out a lot. She tries to get in and play with him and have the same attention that Spencer gets, and it ends up being a problem a lot of the time. Today was one of those times. So, Mike is taking Annie out on a father/daughter date for a little personalized attention. I think it will be good for her.

Tomorrow, Allie is coming to play with Spencer again. He will have a good time, I'm sure. I'm feeling really calm about the scans next Tuesday. I'm anxious to get them over with, but I'm feeling generally peaceful about the whole thing. We will definitely be fasting and praying on Tuesday, if anyone would like to join us.

We are heading into week 30 of 42 of Spencer's protocol next week. It's been such a long year in so many ways, and it's gone by really quickly in others. It's hard to believe that this phase of our life will ever end, but we are looking forward to it ending! :0)

Well, I have to go. Thanks for your prayers and thoughts.

Shauna

Tuesday, August 17, 2004 9:21 PM CDT

A few days ago, I (Shauna) was fixing Annie and her friend Kenneth lunch in our kitchen. Annie said, "Sometimes I'm afraid that Spencer will die." It took me back for a minute. I said, "Why are you afraid that Spencer will die?" She replied, "Cause of his cancer." I paused, collecting myself, and said, "Spencer is doing really well right now. They got his cancer out and he is doing really well with the chemo, and you don't need to worry about that now."

"But if his cancer comes back, he could die," she said. I said, "That's true. But, Daddy and I will talk to you and tell you if his cancer comes back, so you don't need to worry about Spencer right now, okay? And we are a forever family, right? Even after we die, we are still a family and we will all be together again forever." She paused. "Okay, but I would be really sad if Spencer died cause he's my brother and I love him and it would be a long time before I saw him again."

The conversation really made me realize how much Annie is internalizing everything that is going on. When I received the phone call about Garrett's relapse, I was crying. Annie was very concerned and asked me why I was sad. I told her that a little boy had his cancer come back and it made his mom very sad, and it made me very sad, too. That's all I've said directly to her about relapse. But, apparently, she has picked up on a lot more than we have realized. She is a sweet girl. She comes up to Spencer out of the blue and gives him a hug and says, "I love you, Spencer." Spencer says, "I love you, too, Annie." It's moments like those that make being a parent completely worthwhile.

Tomorrow, Spencer's nursery leader from church is coming over to hold nursery with him, since he missed it on Sunday. It's so kind of her to do it. Spencer really likes her and enjoys her visits. Then, Thursday is his platelet transfusion before the weekend. He's bruising a lot again today, so it will be good to get some platelets in him.

I put some pictures up from our trip to the park the other day. The kids had such a fun time. I had a woman come up to me while we were there and say, "I just have to ask. I'm an oncology nurse, and I was wondering if that beautiful bald head is a chemo head." She works with adult cancer patients, and it was fun to talk to her for a few minutes. She said, "I was looking at him thinking, he doesn't have peach fuzz, he doesn't look like it's shaved, he's just BALD!" It was pretty funny. Thanks for checking in on us.

Shauna

Monday, August 16, 2004 6:59 PM CDT

MORE PICTURES POSTED!

I (Shauna) took Spencer, Annie, and Sophie to the hospital today for Spencer's blood work. He's low again on red blood cells, and his platelets were 31, so we go in on Thursday for a probable platelet transfusion. Dr. Sharp is pushing Spencer's chemo treatment back from Monday to Wednesday next week in hopes that his counts will recover better by then. He thinks that Spencer's red cells will come back on their own, so he isn't scheduling a transfusion for that. Spencer also got a dose of aranesp (sp?) again today to help bring his red counts up.

Spencer was in a terrible (and that's being kind) mood today. He was actually pretty happy until we got in there and he started playing and immediately got called back for blood pressure and temperature. That just completely threw him off and he never recovered. He screamed and threw himself on the ground regularly throughout the visit. Even Nurse Jennifer couldn't calm him down, which means he was REALLY cranky. He's been a little better since he got home, but not much. Just an off day for him. . .

Today was the first day of school in Round Rock, so Annie and I started her kindergarten curriculum this afternoon while Spencer and Sophie napped. We had fun. Annie is a quick learner, and it's fun to watch her get excited about things.

Well, tonight is Family Night, and I'm skipping out on a part of the movie "Dog of Flanders" to type this, so I'd better get back out and be part of the family. Thanks for your prayers and thoughts.

Shauna

Saturday, August 14, 2004 5:21 PM CDT

*New Pictures Added*

Yesterday we had our neighbors, the Laytons, over for dinner and to watch the Olympic Opening Ceremonies. The kids had fun playing together, and we know SOOO much more now about the symbolic nature of Greek history. The ceremonies were pretty long, but it was fun to hang out with our friends. That doesn't happen all that often. Spencer was pretty tired, but stayed awake for longer than we expected. He finally fell asleep next to me (Shauna) on the couch just before the torch entered the stadium.

We received some really sad news yesterday evening. Garrett, a friend from the clinic, who finished treatment in March for his Stage 3 Rhabdomyosarcoma, got news yesterday that he has relapsed. The prognosis is significantly worse this go around, and he just had surgery two weeks ago to remove his port-a-cath and will have to have another surgery to put it back in for the next round of chemo. We are so sad for Garrett and his family.

I can tell that Spencer's platelets are low, because he has lots of little bruises, and he has terrible black and blue bruises from the neupogen shots. I don't think he's low enough for a transfusion, but I guess we'll see on Monday. He's been sleeping more lately. I think he's worn out.

Please keep Spencer in your prayers. I'm getting increasingly anxious for his upcoming scans. Thank you for stopping by.

Shauna

Thursday, August 12, 2004 3:32 PM CDT

I (Shauna) have to sit down and take a deep breath, so I'm going to journal for today. I have spent almost the entire day on the phone with either doctor's offices or insurance companies. Even the issues that are moving toward resolution take a lot of phone time to work out. I feel like I made some good progress today, though. I got yet ANOTHER anesthesiology bill from Spencer's radiation and called on it. They told me that those bills just send out automatically and that the claim is being reviewed by Blue Cross, so we don't need to worry about it. I made her look up every one of Spencer's claims with them so that I only had to be on the phone with them once, and apparently the bill I received today is the last claim left to be resolved. HALLELUJAH!

I won't bore you with the details of all of the other claims I've spent the day working on. Annie has become very annoyed that Mom is ALWAYS on the phone (mostly on hold) and she told me I need to stop calling so many people. Amen to that! I called Mike before he came home for lunch and was complaining about all of the time I spend calling about claims. And then he picked up the mail on the way home and came in with about 4 new messed-up bills that I need to call on. The latest is from Spencer's "Big Chemo." The insurance is denying coverage on his Topotecan, which is (after the discount) $2200.00/day. So, we have a $22,000.00 tab at Dr. Sharp's office. It should be taken care of--I talked to the billing person and she said that Dr. Sharp was going to write a letter of medical necessity and that it should get worked out. But, in the mean time, we have a refund of almost $150 from their office that they now have to hold onto until everything gets worked out. (sigh)

Then, on top of it all, I got a bill from my OB/GYN today for a visit from May of 2003! Just out of the blue, because we didn't have enough stuff to call about. So, I had to talk to a bunch of insurance people, because we were on yet a DIFFERENT plan back then, and figure out what the deal was. I think it's taken care of and they will pay the entire thing, but I almost laughed when I saw it. I said, "It's not enough that we have to fight this year's claims, they had to throw in last year's on top of it all!" But, I think most things are getting taken care of. Emily, from Candlelighters, is coming tomorrow morning to work through the few big claim mess-ups that we are still trying to wade through. I appreciate the help that she is providing. She has taken on the home health claims from the insurance switch over, which I know is saving me a lot of phone time. She's wonderful.

Okay, enough boring insurance talk. Spencer met with Duvette, his Early Childhood Intervention (ECI) Specialist, and Tara, his new Ocupational Therapist. It was a really interesting and encouraging visit for me. Tara said that she doesn't see Spencer as having Sensory Integration Dysfunction, or any austistic spectrum disorder. She said that he does have tactile defensiveness and some social delays, but he is too verbal (?!) and interactive to have a spectrum disorder.

I made a list back when Spencer turned two and I first learned about Sensory Integration Dysfunction of all of his habits and characteristics that were not "normal." I showed it to Tara. She said that if she had seen Spencer back then and had read the list, she would have definitely classified him as autistic or SI dysfunctional. But, she said to see him now, and to know his medical history, she really thinks that most of his delays were probably related to the pain he was experiencing from the tumor. She said that looking at his progress now, since his cancer treatment started, and looking at his symptoms before, she believes that he was just a little boy in a lot of pain, so he shut down a lot of his sensory function to cope with it. It makes me feel so sad to think about him hurting for that long and unable to express it, but it's also very encouraging to hear that he no longer fits the description of an autistic or sensory dysfunctional child, and that he won't have to deal with these issues his entire life.

Tara said it might be helpful to visit a neurologist to see what their official opinion is, but she said that she knows the criteria that they use for diagnosing spectrum disorders, and she really doesn't think that Spencer would qualify. We may schedule a visit just for a second opinion on everything.

The school district called. When Spencer turns 3, ECI can no longer provide therapy services, it gets turned over to the school system. Their services are usually provided in the schools, but because of Spencer's immune system problems, they are willing to provide at-home therapy, which is great. Mike and I are meeting with them on August 25th to meet the team of specialists and find out exactly what services are available. Then, they will set up an evaluation with Spencer to see if he qualifies for services.

Well, sorry for the novel. I have to go get Sophie up from her nap. Thanks for checking on us.

Shauna

Wednesday, August 11, 2004 7:13 PM CDT

Spencer had a good day today. His volunteer friend, Allie, came today around noon and stayed until around 3:30 just playing dinosaurs and anything else Spencer wanted to do. It was so fun to watch them play, and I got some good pictures that I will put up soon.

Insurance issues are still like flies buzzing around our head constantly. Just when we get one thing settled, something else comes up. I (Shauna) spent all of my free time on the phone working out insurance problems, and Mike did the same. What a pain.

We fed the missionaries tonight, and now I'm going with my neighbor Joy to give blood. I used to feel obligated to give because I'm a blood recipient myself, I feel doubly motivated now that Spencer has been receiving blood every few weeks for this entire year. It's such a good cause and such a simple thing to do. Mike is thinking about going tomorrow night to donate. We can't donate our blood to Spencer, because they are saving us as possible bone marrow donors should Spencer relapse. But, it's still nice to feel like you are giving something back.

Tomorrow we get to meet Spencer's new Ocupational Therapist, which I'm really excited about.ccccccdxxddxxxdssssssxxdxxd xdddddddddxxdddddsssssdsdsddddsdssss eddsssseew4eed444433433444443333333322 21111111`````````1222 3 w32 wwwwww
wwwwwwwwwwwwwwwwwwwwq(That was Spencer's 2 cent's worth)

I have to go. Thank you for checking on us.

Shauna

Tuesday, August 10, 2004 9:20 AM CDT

Spencer got a blood transfusion yesterday, so he and I (Shauna) were at the clinic most of the day. Annie and Sophie played at my neighbor Joy's house. Spencer also got his neupogen through his line there and a medicine to help boost his hemoglobin counts. It went pretty smoothly, but I was pretty tired and wasn't really quite ready to be back at the clinic again for another full day. We survived it, though.

Two weeks from today is his next set of CT scans. We will continue neupogen the rest of the week and don't have to go back in until next Monday, which is wonderful. Spencer's counts were still decent yesterday, so I'm taking the kids to a park this morning with Joy and her boys to play. They have a water area there for the kids to splash in. Should be fun. Then we'll have a picnic and head home for naps.

I'm really hoping for a relatively peaceful week. We have some at home visits planned, but we shouldn't have to go anywhere major, which makes me really happy. Thanks for checking in on us. We appreciate it.

Shauna

Saturday, August 7, 2004 7:23 PM CDT

*We added new pictures yesterday*

All done with another round of chemo. YEEEHAAA! Spencer has been in a very bad mood today, which usually means he's not feeling great. It also usually means that the rest of the family is in a very bad mood as well, which was definitely true today. Spencer was very happy to get deaccessed today, though. He walked up and down the stairs and from room to room just to prove he could.

He's on a total banana kick right now. He wants nothing but bananas all day long. He will occasionally ask for something else, take one bite, and then ask for a banana. Chemo in an already picky 2-year-old--not a fun combination, that's for sure!

Home health brought out some neupogen shots for us to start tomorrow to boost Spencer's white blood cell counts. And Spencer's good buddy, Allie (the summer volunteer from the clinic) emailed and is going to come out to our house one day this week and play dinosaurs with Spencer, which of course he will absolutely love!

Well, I think we are all going to turn in early tonight. It's been an extremely draining week and we probably will do an all day hospital visit on Monday for a blood transfusion, so we are trying to get as much down time over the weekend as possible. Thanks for checking in on us.

Shauna

Friday, August 6, 2004 6:50 PM CDT

*NEW PICTURES IN PHOTO ALBUM*

We are almost finished with Big Chemo Week and we're all ready for it to be done. Spencer still needs to be hooked up to his portable IV pump until noon tomorrow, but we are counting down the hours.

We do have some good news to report, though. We are getting some help with our billing/insurance troubles. We now have a Case Manager at Aetna, thanks to Spencer's nurse, Jennifer (thanks!). We're still trying to figure out exactly what kind of help the Case Manager can and cannot provide us, and I'm also looking into additional resources via HR at work (this is Mike, by the way). Also, Emily (with Candlelighters) heard about the mixup with the home health care and is going to help us try to work it out. Apparently, they are supposed to get pre-authorization before each delivery, so they should have been aware that we were no longer with Empire (our old insurance provider).

So life is not so terrible as it sometimes seems. Fighting insurance issues and bills is still very high up on our list of Really Crappy Things That We Have To Do, but its not as bad as it was on Tuesday. In fact, one good thing that came out of the whole mess is that we much prefer the new home health provider to our old one. They came highly recommended and seem to care more about making things easy on us, which is nice.

Another bit of fun news: When Shauna and Spencer were at the clinic on Wednesday, they were filmed and photographed by Seton (a hospital network here) for some TV ads and posters. So we'll see what happens there. They all gushed over Spencer, apparently, and thanked Shauna for allowing them to shoot.

Well, only 17 more hours to go before we can de-access Spencer. That's about 6 diaper changes. :) Then we only have two more of these Big Chemo weeks to go (though we still have some form of chemo nearly every week between now and the end of treatment in November).

That's about it for now. We're looking forward to a quiet day tomorrow.

-Mike

Tuesday, August 3, 2004 7:43 PM CDT

Shauna here. Well, today has been a little nightmarish, to say the least. The chemo went quite smoothly. Spencer did really well and we were home by 1:00pm. That's when the nightmare began. I got a bill from Spencer's surgeon for over $750 because the assisting surgeon is an out-of-network provider. Of course, we didn't know he was out-of-network. Heck, we didn't even know that there was an assisting surgeon for his surgury. I was looking up the claim online at Blue Cross/Blue Shield's website and noticed that there were claims coming through from our home health care company for the month of July. I realized that they must not have our new Aetna insurance information. So, I called them and told them. The lady said, "Oh, we aren't a provider for Aetna." Nice to know, since we've been using them for over a MONTH and we are in the middle of using them right NOW! So, it turns out that because they are also out of network, we will have to pay over $1000.00 for this month's services, and we had to find a new home health care provider TODAY. It was a total mess.

OH, and we're getting 20 bills a week from the anesthesiologists that provided Spencer's anesthesia for his 20 doses of radiation, because they don't wait to see if the insurance will pay, they just start sending reminder bills a LOT. Oh, and because it was outpatient and wasn't associated with one particular hospital stay, each claim has a different account number and is not connected with any of the other claims, so we have to go through 20 claims every time we call. I called today and hope it is worked out, but we'll see what happens next week. Mike is going to look into the patient advocate through HR at his work. We need serious help. We are now fighting two insurance companies and about 10 different providers and I am going CRAZY trying to do that on top of chemo/hospital visits every day. I was in tears, I'm telling you.

On the bright side, the new home health care company comes HIGHLY recommended from Spencer's nurse and are supposed to be wonderful to work with. So, I'm looking forward to that. We have to get an appeals letter on the assisting surgeon thing, since he is the only pediatric urologist within 70 miles of Austin and we didn't really have a choice there. It's days like this where I just have to remind myself that we are lucky that we have bill stresses because it means that Spencer is still with us and we are still winning this fight against cancer. There are families who aren't as lucky.

I read a really good article today at the clinic in a cancer magazine called "Coping." It was by a cancer survivor by the name of Brian Stabler, who had non-Hodgkin's lymphoma. It was about facing the fear of recurrence. The quote that I loved was where the author says that he has to remind himself that "at any moment and at any place, something bad could happen. There, I've said it. Bad things might happen again. OK, one more time, bad things might happen again. . .However, by exactly the same token good things can happen, and with precisely the same degree of certainty as the bad. It's a 50-50 world I tell myself over and over again."

I found that quote really applicable to our situation. Spencer's type and stage of cancer has a 50hance of relapse. So, I've been stressing about the possibility and implications of a relapse in our lives. But, this quote made me think. I have as much reason to believe that Spencer will finish this year of chemo and move on, free of disease for the rest of his life. In fact, I have compelling reason to believe it. Spencer has love and hope and faith and the prayers of more people than I can count. I'm humbled at the kindness and generosity that has been shown to our family through this ordeal. And it's not just cancer. Bad things happen to EVERYONE. We can waste our lives worrying about what might happen every day of our lives, whether it's cancer or any other number of trials. Or, we can move forward and look toward the good that will certainly accompany any bad that might occur. That's how I want to live, and that's how I want to face this disease. Less stress and more hope. I will probably have to remind myself of this over and over again, but it made a difference to me today.

Thank you for checking in on Spencer. Thank you for praying for our family and for our brave little son. Thank you for signing our guestbook and for keeping us in your thoughts. We apppreciate it more than we can say.

Shauna

p.s.--Briana, we really liked the movie! :0)

Monday, August 2, 2004 9:42 PM CDT

Busy day. Spencer and I (Shauna) spent the ENTIRE day at the hospital getting his fluid levels up and receiving his initial dose of chemo for the week. The day went really smoothly, despite the long hours we spent there. Spencer's white blood cell count is back down to 2.3, so it must have been the neupogen that caused the high count before. Spencer was in a good mood today, and one of his favorite friends, Taylor, and her mom came and brought us lunch and visited for a while. Spencer had a great time playing with Taylor and only had a couple of "2-year-old" moments that were short lived. Only four more days to go!

Dr. Lockhart is seeing Spencer this week because Dr. Sharp is out of town. She looked at Spencer's last scan results and ordered a new set of CT scans for August 24th. It made me a little nervous that she felt compelled to order more scans, but I talked to Spencer's nurse, Jennifer, about it and she said that Dr. Lockhart just always tends to be very cautious about these kind of things and likes to play it safe. And that's great by us. It will be good to perhaps set my mind at ease about the abnormalities on his last scan.

Oh, yes, and our day wouldn't be complete without a little chaos story, now would it? Spencer was playing calmly on the floor, just sitting there with his toys. I was sitting in a nearby chair reading a magazine, when I heard Spencer say, "Ow!" Spencer says that usually not when he's hurt, but when he's wet. I looked over, and sure enough, the tube had come apart and chemo was dripping on to his leg and the floor from one end of the tube while the other end was dripping out blood. Somehow he managed to disconnect the tubing and it was leaking out both ends. I grabbed the end connected to him and clamped it off to stop the bleeding and hollered to the nurses for help with getting the chemo shut off and cleaning up the bloody, toxic mess. And of course, I had no gloves on at the time, so when everything was resolved, I was sent to the bathroom for a good scrubbing with lots of soap. Ahh, just another day in the life of the Joneses.

Mike and I went to see Bourne Supremecy in the theater tonight after the kids were in bed. My mom said they were good, even though everyone was still awake when we got home.

I have to turn in. These long chemo days wipe me out! Spencer, too. He slept all the way home from the clinic in the car today, which was a pretty good nap since we were going in rush hour traffic. I don't know how he's going to survive the week without naps. Hopefully, we'll get home a little earlier the rest of the week.

So far, the nausea seems to be under control. Please pray that it continues that way.

Shauna

Sunday, August 1, 2004 9:46 AM CDT

Shauna here. I just have to say in my defense, my dramatic pause when Make-a-Wish asked us what Spencer would want for his wish was deciding whether or not I could really say Disney World without having to justify it or get Spencer to say it. We were really happy when it was a non-issue about whether or not Spence could actually vocalize that Disneyworld was his wish. I still have a few reservations about getting excited about it--I'm afraid it will get passed to the head of the chapter and she will say he's too young for a trip wish. We'll see.

Friday, Spencer's nursery leader from church came to our house and held nursery just for him. She is so good with him, and he was really happy to see her. Since his counts are up (WAY UP!) we are all going to church as a family today and Spencer will actually get to go into nursery for the second time this year. All morning, he's been saying, "I ready bye-bye."

My mom arrived last night and Annie is in 7th Heaven having Grandma Sorensen around. Chemo starts tomorrow, and I'm already dreading it. We've decided to do it from home, even though it will cost us $150. Spencer is happier at home, everyone sleeps better, and this way, after the kids are all sleeping at night, Mike and I can sneak out together for a short date in the evenings while my mom stays with the kids. Mike did call the insurance to ask if they would be willing to wave the co-pays for the week, since our doing it at home saves them about $45,000, but naturally, they were unable (unwilling?) to do anything about the situation, because it's against their policy to wave co-pays EVER. Sigh. Ahhh, the health care system in this country. . .

Well, I'm off to put Sophie down for a nap before church. Please pray that Spencer won't have the same nausea/vomiting issues this time that he had on his last chemo treatment. Thanks for checking on us and for keeping us in your prayers.

Shauna

Friday, July 30, 2004 6:51 AM CDT

Mike here. Our meeting with Make-A-Wish on Wednesday went very well. A volunteer couple (husband and wife) met us at our house and brought a toy for Spencer: a little farm tractor with little talking farm animals ("I am Pinky the Pig! Oink! Oink!"). They could see that Spencer was too young to articulate his "wish" so they just asked us to tell them what we thought he would want the most.

Alicia (from Make-A-Wish): "...so it's really up to you and it could be anything from meeting someone famous to a Disney World trip to--"

Shauna: "Hmmm... (pauses to think as if she hadn't decided months ago) ...I really think that he would like the trip to Disney World because he really likes dinosaurs and I know that they have dinosaurs there (?!) and I just know he would have so much fun there. So, yeah. Disney World."

And that was that. She gave us some paperwork to fill out, we picked some dates in January that we thought would work well for us, and that was it. We had been prepping all day for what we could say to convince them that Spencer really would want a trip to Disney World -- hence the "dinosaurs" comment -- because we had been told earlier that if he couldn't say what he wanted, they would just give him a nice gift (but no Disney World). So without meaning to sound ungrateful, we were really happy when they just asked us what we thought he would like. They were both very nice and very good with Spencer, who tends to be touchy about meeting new people. Of course, the tractor and farm animal toys didn't hurt their cause.

Shauna and I are pretty excited about the whole thing, but Annie has us beat. January is going to be slow in coming for all of us, but especially for her, I think.

Still no indication of an infection, despite Spencer's unusually high WBC on Wednesday. Strange.

Well, I'm off to work. Next week is "Big Chemo" and Shauna's mom will be here tomorrow to help us out. Have a good weekend, all.

-Mike

Wednesday, July 28, 2004 5:06 PM CDT

Spencer had a rough night for the second night in a row last night. Poor Mike has to be pretty worn out, since he is the one that gets up with him in the night. I (Shauna) took Spencer in for counts this afternoon. Annie and Sophie stayed at our neighbor's house, which made the trip a whole lot less stressful.

So, Spencer's counts--his red blood cells are back down to around 9.0 and his platelets are holding at 107. I was a little worried about the platelets because he has a ton of little bruises all over. But, apparently he's okay. His white count was what shocked me. Remember normal is between about 4.0 and 11.0, and Spencer generally hovers around 1 or 2. Well, today his white count was 25.2! The concern is infection, but he hasn't been running a fever or acting sick. He's been having bad nights, but hasn't acted like he doesn't feel well. So, they are doing a blood culture to rule out infection and chalking it up to the neupogen that he's been taking. We are supposed to watch for signs of illness. I have a hard time believing that the neupogen is causing his high counts. It has NEVER helped that much in the past, but I guess there could always be a first. . .

Spencer was very excited to find his friend Allie was there today. She is the high school aged volunteer that Spencer has adopted as his personal play friend every time he goes. He LOVES her! We usually see her there on Monday mornings, so it was a nice surprise to find her there on a Wednesday afternoon. We were sad to find out that today was her last day, because school will be starting again soon. She was there this morning and saw Spencer on the schedule, and so she waited to play with him one last time. Spencer's face lit up when he saw her there. We will all really miss Allie around the clinic, that's for sure. She has been such a blessing to Spencer and to all of us!

We also saw Jacob and Garrett at the clinic today. Both are rhabdomyosarcoma survivors, like Spencer, and are good buddies. Jacob was having a chemo treatment, and Garrett, who just finished his treatment plan in March, was along for moral support for his friend. They are cute boys. It was great to talk to Jacob's parents. (His dad works with Mike for CSC). They gave Spencer a LiveStrong shirt. It was so sweet! Spencer loves it, and I bought one for Mike while I was in Utah, so they have matching father/son shirts. I'll have to take a picture and post it.

I talked to Dr. Sharp about Spencer's scans. He said he felt that everything looked good. I asked about having another scan done before the end of treatment, and he said, "We can do a scan whenever you want to know what is going on in there. You just let me know and we'll plan it." We love Dr. Sharp. He is a travelin' man this summer, though. He will be gone again next week, and asked if we wanted to postpone Spencer's week-long treatment until week after next. It's tempting to put off the inevitable, but my mom is coming this weekend to help out, so we decided to go ahead with treatment next week as planned. I don't really want to tack any extra weeks on to this ordeal anyway, so it will be good to keep pressing forward with the current schedule.

And finally, Make-a-Wish is coming out this evening to interview us and to talk about a wish for Spence. We are really hoping that they will let us go to Disney World. I know Spencer would love it--we all would. But, if they are unwilling to grant us this wish, we will try to go through another wish-granting foundation to see if we can still go. We'll let everyone know how things turn out.

Well, I've written way too much for one day. Sorry. Thank you for all of the kind guestbook entries. We read them every day and they are such an uplift to us. We appreciate all of the thought and concern that people have given our family. Thank you!

Shauna

Tuesday, July 27, 2004 8:43 AM CDT

Well, we're home! The girls and I arrived around 2:30 yesterday afternoon. It is really great to be home. We were all homesick for Spencer and Mike the whole time, even though it was great to see all of my cousins and kin. Annie had 5 other little girl cousins that were within a year of her age and she had a BLAST! They played barbies and princess and ran around like maniacs for 4 days. She was very sad to see it all end.

Mike and Spencer also had a party while we were gone. One of my cousins and her husband live in Houston, and her husband couldn't make the reunion, either, so he drove over to Austin for the weekend and he and Mike played computer games into the wee hours of the morning. Spencer got blood on Friday and is still neutropenic. His ANC had dropped to 300, so they didn't really go anywhere, but I think they had a good time anyway.

Yesterday, Mike and Spencer met us at the airport. Spencer was really excited to see me, and I was really excited to see him. He's something of a mama's boy, which I kind of love, and we really missed each other. I rode home in the back seat next to him all the way home and we played dinosaurs together. I have to say, it was a momentary shock to me to see Spencer bald. I know he is, of course, but I think in my mind, I always see him with hair, so when I saw them for the first time--Mike holding this little bald boy, it took me back for a second. I thought, that is the only bald kid in the entire airport. Mike said, too, that he forgets that Spencer has no hair, or is so used to it he doesn't really think about it, until he got to the airport and realized that people were taking special notice of him.

It's good to be home. Tomorrow we head back to the hospital for more blood work. Oh, and suddenly our old insurance is TOTALLY messed up and asking for refunds from doctor's offices where they've already paid, saying that we owe more. So, I was already back to the grind this morning, on the phone with the insurance going over claim after claim, showing that we really did meet our out of pocket maximum. What a mess. The girl I talked to was confused and kept putting me on hold. She came back at one point and said, "You have a LOT of claims." I said, "I know that." She said to figure out the problem she would have to go through every claim for every member of our family for the year, and that she would just forward the problem on to her manager and have her call me. So, I'm waiting on THAT fun call today. But, I'm so happy to be all back together as a family again that I don't even mind that much.

Well, Sophie is awake and ready for breakfast, so I'd better go. I need to unpack and do laundry today, and catch up on some play time with Spencer.

Shauna

Thursday, July 22, 2004 8:10 PM CDT

So Shauna and the girls made it away yesterday. Annie has been talking nonstop about how much fun it will be to see all of her cousins. She has turned into a silly five-year-old that likes to giggle a lot -- and Shauna tells me that for girls, the giggling only gets worse from here on out until they hit their 20's or so. A scary thought...

Anyway, I dropped them off at the airport and watched Shauna walk away -- juggling a carseat, two suitcases and a carry-on, a stroller and two kids. Lucky for her, Annie helped by pushing Sophie in the sroller. I tried to get her to leave the carseat home and just rent one from Avis, but she's a glutton for punishment. :) Actually, she was a little bit stressed out by it all. And by "a little stressed out" I mean "on the verge of a breakdown." But she made it and the flight wasn't too bad, from what she told me, except for a delay in Houston. There was a nice guy that sat next to her on the flight to Salt Lake and helped entertain the kids.

Spencer and I have been livin' the bachelor life: movies and pizza (is that the bachelor life? it's been a while...). Tonight we watched "The Hobbit" (an animated version produced in the '70s). He stayed with the Laytons today while I was at work (thanks, Joy!) and apparently had a fun time there. He's seems to be more tired than usual, so it's good that were going in for a transfusion tomorrow, but he's been in good spirits overall.

-Mike

Tuesday, July 20, 2004 7:14 AM CDT

Shauna here. Yesterday at the clinic went pretty smoothly. Spencer is back to screaming through anything medical there. It's discouraging. He had gotten so that he didn't fuss about weight/temperature/blood pressure, but those days are gone. He screamed through his exam by Dr. Wells and screamed through his accessing by Jennifer. I guess I keep thinking that he's going to adjust, but I guess it's just not meant to be. Dr. Wells was nice, though. He said, "Well, I've never been through what Spencer's going through, and I hope I never have to. So, I'm not going to judge his response to it all." And Jennifer is really patient with him, too. I just wish he had it a little easier when it comes to social interaction.

Spencer's counts are still not good. His ANC is 504 (just over the critical stage). His white blood cells are 0.7, and his red blood counts were 8.6, which Dr. Sharp would have transfused then and there. But, Dr. Wells thinks that it can pass, so he will go back in early Friday morning for a transfusion, unless, of course, he looks "especially pale." That will be Mike's duty, since the girls and I are leaving tomorrow for the family reunion. Annie is so excited. She woke up this morning saying, "MOM! We have to get packed!"

Mike and I put the kids down at 7:30 last night, and I went to bed along with them. I was so wiped out, but after 11 hours of sleep and a good work out this morning, I am feeling much more prepared to face the rest of the week.

Today will be laundry and packing. We will probably need to continue neupogen over the weekend. They will decide for sure at Friday's appointment. This week and next is a pass on his vincristine treatment, just the way his protocol schedule is set up. I'm really glad that he gets a little break from chemo, after the poor physical response he had to his last round. His little body could use a break, if you ask me.

I will pass the caringbridge torch to Mike while I'm gone to Utah, so if you don't hear anything from us for the rest of the week, you'll know who to cuss out in the guestbook. :0)

Thanks for stopping by. Please pray that Spencer will continue to improve socially as well as physically. We really appreciate everyone's prayers and thoughts. Thanks for keeping us in your prayers.

Shauna

Sunday, July 18, 2004 4:16 PM CDT

**New Pictures**

I don't know if the stress of the week is just manifesting itself this weekend, or what, but everyone is cranky around the Jones household! Spencer is just going from one tantrum to the next. I (Shauna)keep telling Sophie that she is nowhere NEAR the terrible twos and she needs to stop pretending that she is. She and Spencer are just not getting along at ALL this weekend. Everytime they try to play together, three minutes in, they end up both in tears. And if Sophie thinks she's 2, Annie certainly is trying to play the roll of a teenager--we're talking mood swings and crying spells that would put a 13 year-old to shame! Mike and I are feeling spread pretty thin, trying to referee all of the conflicts and battles going on around here. Tell me we are not the only family to have days like this!

We did, however, have a really nice break from it all last night. One of Mike's friends from work and his wife invited us to double with them to dinner and a movie. We went to Joe's Crab Shack and then saw Spider Man 2. It was a fun night and we were both feeling refreshed afterwards. That freshness lasted about an hour into this morning of sending kids to time out in a steady stream and settling arguments left and right. Oh, well. It was nice while it lasted.

Tomorrow, Spencer goes in for blood work. He will probably need a transfusion at some point this week. I don't know, though. Dr. Sharp is out of town, and some of the other doctors wait until his counts get lower to transfuse. I'm hoping that we can do it before the girls and I leave for Utah on Wednesday, if at all possible. I guess we'll see how it goes.

We are continuing his neupogen shots this week. Mike and I have a new system for giving Spencer neupogen. It used to be that I would hold him down and Mike would give him the shot. But, Spencer is getting too strong for me, so Mike holds him and I give the shot. I don't know what Mike will do when I'm gone this week. We have to do neupogen until Thursday, so we could do one Wednesday morning before I leave, but he'll still be on his own on Thursday. He may have to enlist our neighbors to help out.

Well, I'd better get going. I hear a fight coming on in the next room. . .wish me luck.

Shauna

Friday, July 16, 2004 8:42 PM CDT

Shauna here. Spencer started running a low-grade fever last night after he went to bed. It was between 99 and 100 until this morning. He does that now quite frequently--runs a low-grade fever after chemo treatments. He slept pretty soundly until around 4:00 this morning. I could hear him start to moan off and on until around 4:30 when he started throwing up. Poor guy was so sick! We gave him some zofran and he fell back asleep around 6:00am. He was on anzemet for nausea this time around. I don't think it worked very well. He has been really sick with this treatment, which is unusual for Spencer. Plus, he didn't get his last dose of anzemet because he got deaccessed. He hasn't had nausea/vomiting issues since his first round of chemo back in January, so we didn't give it to him last night before bed. BIG mistake. He has had a majorly off day today. He is tired, sick, and cranky. I gave him another zofran around 10:30 this morning. He hasn't thrown up again today, but he sure is not acting like he's up to par. Poor kid. We have four months of treatment left, and we are counting down the days!

His Early Childhood Intervention Specialist and Speech Therapist came to visit him today. He played for a while, but was not much in a playful mood. He has just wanted to be held all day, which means that I haven't gotten a lot done myself, but I guess that's okay.

We are looking forward to a quiet weekend. Time to unwind from the stress of the week and just enjoy doing nothing! Hope you all have a good weekend, too. Thanks for checking in on us.

Shauna

Thursday, July 15, 2004 1:32 PM CDT

We survived another round of what we around the Jones household like to call "Medium Chemo". For those of you keeping track, there are three kinds of chemo (on Spencer's protocol, that is):

  * LITTLE: This is just Vincristine. He gets it on Mondays except for every third week when he gets Medium or Big chemo.
  * MEDIUM: This is the VAC combination (Vincristine, Actinomycin, Cyclophosphamide) that takes a couple of days. He gets the chemo all at once, but receives some follow-up drugs and fluids for 24 hours.
  * BIG: This is the VTC combination (Vincristine, Topotecan, Cyclophosphamide) that takes the whole week. Spencer get a little bit each day and is on fluids around the clock from Monday to Saturday.

As has been mentioned in previous posts, the trouble that comes with him receiving 100ml/hour of saline is that his diapers fill up every 2 hours, and if we don't manage to change him in time he leaks out toxic chemo juice all over. Not so much fun, especially at night. And for some reason his protocol stipulates that the fluid rate needs to be increased by an additional 20ml/hour this time (used to be 80ml/hour). Needless to say, it's always nice to be able to unhook him from the IV pump at the end of a medium or big chemo.

This is Mike again, by the way. I'm taking a late lunch so that Shauna can take Annie to see Dr. Flood for a follow-up visit for her arm (see April 15th journal entry). She made him a card that said "Dear Love Flood Doctor Thank You For Fixing My Arm" and she decorated it with hearts and rainbows and stars. Pretty cute. Anyway, I'm staying with Spencer and Sophie at home while Shauna takes Annie to see Dr. Flood.

We got the brakes fixed on the van for about a third of what we were quoted yesterday, which is good.

When I came home today, Spencer met me at the door with his dinosaurs. He likes to play pretend with them, and calls the big one "Daddy", the medium-sized one "Mommy", and the littlest one "Sophia". Somehow, the Mommy or the Daddy always end up trampling on the rest of them -- not really sure what to make of that. When that happens, I like to grab the offending dinosaur and set it aside for a "timeout" and a scolding, which Spencer thinks is hilarious. He plays a variation of this game at the clinic too, with Allie, who is a high-school-age volunteer there for the summer. Spencer and Allie are pretty good buddies, and he gets mad if she has to step away from him. Yesterday she sat on the floor with him for the entire treatment (about 4 hours long). It was fun to watch them play together.

We're feeling much better about Spencer's scan results since talking with Dr. Wells yesterday. I'm wondering, though, how well we will cope with the stress of that ordeal (scans) over and over again for the next few years. Shauna, in particular, has had it rough for the last couple of weeks leading up to the scan, and the days since we heard the results.

I think Sophia is waking up from her nap, so I'd better go. Thanks, as always, for the prayers and for the kind words of encouragement in the guest book.

-Mike

Wednesday, July 14, 2004 5:34 PM CDT

Shauna here. Well, Spencer "got" to start chemo today. His ANC was up to 800, and his protocol only requires it be above 750, so they went ahead and did the chemo today. Mike took Spencer to the hospital, and amazingly enough, they were out of there by 1:00pm. He is having a harder time with this treatment than usual, though. He is really off balance and shaky. He is hungry, but won't eat. He is laying around and not wanting to get up and move, which is kind of nice because then we don't have to worry about carrying his iv bag around, but sad because I know he feels lousy. He is upstairs with Annie watching a cartoon as I type, and I wouldn't be surprised if he were sleeping already.

Mike talked to Dr. Wells about the scans. He eased our minds a little by saying that the spots on the lungs are quite common and that about 1/3 of all of the kids they treat get them, and they aren't anything to worry about. He said if in his next scan, there are any that are 6 mm, then we might be concerned, but that he really thinks it is nothing to worry over. He also said that the spleen is a highly unlikely place for the cancer to return. He said usually it is in the original place, the lungs, or the bone marrow. He also said that the report said that there was possible volumning, which means that it could be a spot created by the scan, and not even really there at all. So, he said that he wouldn't think that we would need another scan before our next scheduled scan in November, but that we can talk to Dr. Sharp, and he didn't think that Dr. Sharp would have a problem with scheduling a half-way scan in between now and then, which would make us feel better. So, we will talk to Dr. Sharp about that possibility when he gets back.

In other news, our switchover on insurance plans has been anything but a smooth transition. Our new insurance still hasn't found the EOB from our old insurance stating that we have met all of our out of pocket maximums, so they keep refusing to pay for anything everytime we go to the doctor. It's so frustrating. They promised us that they would call today with information on the EOB, but we haven't heard anything from them. So, we will have to fight that battle again tomorrow.

Also, the brakes on our van are messed up. We just spent hundreds and hundreds of dollars on them not all that long ago to get them totally replaced, and now we are being told that the parts and labor to fix them would be almost $750. So, we are going to have to go back to the original place we had them fixed and get them to fix the job they obviously didn't do very well in the first place. One more thing to fit into our crazy lives.

In happier news, we get to deaccess Spencer from home tomorrow around noon and don't have to go back to the clinic until Monday morning, which will be a nice break for Spencer and for the rest of us. Tomorrow, Annie has her follow-up appointment with the surgeon on her arm, and then I have the Enrichment Activity at the church in the evening. This is the last one that I'm going to be totally in charge of, because the Enrichment leader returned home from Utah last night! YEA!!!!! It has been so much more stressful than I thought it would be, and I'll be glad to have it all over tomorrow night.

It has been a highly stressful week for us. I think I am the worst at harboring stress and anxiety. Mike keeps reminding me that it doesn't help to stress and that I don't need to take on the entire year's stresses every minute of every day. It's so hard for me to put things on the back burner. I just mull over everything that we have done, are doing, and have yet to do until I'm almost crazy. I'm trying to relax a little. I will be relieved when this week is behind us. Next week the girls and I are going to a weekend family reunion in Utah. Mike will stay here with Spencer, since his counts are terrible and he shouldn't be anywhere public. I'm looking forward to the break and the family chatting, but I'm feeling really sad that Mike and Spencer aren't able to come. It would be really nice to have a family vacation all together.

We have been in touch with Make-a-Wish. I don't think they will send us to Disney World after all. They said that because Spencer can't SAY Disney World, they can't really prove that that is what he really wants. So, they may just chose a gift to give to him instead. We have decided that we will take him there whether Make-a-Wish helps us out or not, because I KNOW that he will LOVE LOVE LOVE to be there, as will the rest of the family, and it will be a great celebration for the end of treatment.

Well, I've written half a novel here. But, take comfort in the fact that I'm restraining myself from writing the other half all in one entry. There are so many events and emotions going on in our life right now, and it's like therapy for me to write them down. Thanks for stopping by and for listening, and thank you for your prayers and thoughts on Spencer's behalf. We appreciate them!

Shauna

Tuesday, July 13, 2004 2:53 PM CDT

UPDATE (8:20pm): Spencer is bald again. After his nap today, he climbed up on my (Shauna's) lap and when he climbed down, there was hair all over my shirt. Most of the rest of it came out in the bath tonight. He still has just a little bit left that will probably be gone in the morning (sigh). Sad times for Mom and Dad. Oh, and I put some new pictures in the album.

We got Spencer's scan results this afternoon. The good news is that there was nothing blatantly wrong. However, he didn't exactly get an "All Clear" either. There are some "tiny nodular denisties ... measuring in the 2 to 3 mm range" in his chest (lungs?). These are "too small to further characterize" so attention on follow-up is recommended. Basically, they are too small to tell for certain what they are, but it could be nothing.

Also of concern is the development of a small (approximately 3mm), low density lesion on the spleen. The fact that it appears to be low density suggests that it's a cyst but, again, it's too small to tell for sure. Dr. Sharp is out until 7/26, so he has not seen the results yet. Dr. Wells said he is not concerned and does not feel that the situation warrants any additional scans between now and November, which is when Spencer is scheduled to have his next evaluation (and also end his treatment). We would still like to talk to Dr. Sharp when he gets back and see what his opinion is.

I received a faxed copy of the scan results at work today (this is Mike, by the way). It's full of medi-babble and difficult to decipher (example: "No axially hilar mediastinal adenopathy is identified."). I had to try and read it to Shauna over the phone from work, and I think I butchered most of it. I can handle one or two unfamiliar words in a row without tripping up too badly, but "axially hilar mediastinal adenopathy" was a bit of a stretch for me. We were able to get the gist of it, though, and Shauna had of course already talked with Jennifer about the results over the phone.

What can I say? It would've been nice to have a crystal clear evaluation, but in the absence of that, we'll just have to be patient and have faith. So we will. Thanks for all the thoughts and prayers from everyone over the last few days.

-Mike

Monday, July 12, 2004 3:25 PM CDT

Update 5:00pm: Spencer's nurse called. The CT scan results are not in yet. The chest x-ray results are back and look good. Dr. Sharp has decided to not do neupogen, even though Spencer's ANC is only 374. He wants us to sit it out and see if his counts will come back up on their own. We will go in on Wednesday, but will probably not be able to start chemo, because they like his ANC to be at LEAST 1,000 to start chemotherapy. So, we will go do blood counts and then determine when to try to come back in for chemo. She also said that if she hasn't called me by noon tomorrow with the CT Scan results (it's a busy day for them tomorrow) to call and leave a message and she'll get back to me as soon as possible. So, we get to fret over night, but hopefully will find out something tomorrow morning. We'll let you all know. . .


We are back from the hospital. Scans went fairly smoothly considering. Spencer cried but held still. We were handed two big bottles of powerade with contrast liquid for him to drink. They told us he HAD to drink at least one of the bottles, preferably 1 1/2 and at best all of both. They gave him a twirly straw, and he drank all of 3 sips before he decided he was done with the contrast stuff. Having a little experience with this before, however, Mike asked for a syringe and gave him syringe fulls over and over again. It worked well, because we got 1 1/2 bottles down him for the scans. Thank you for all of your prayers. Things went much more smoothly than they could have and we got done and out in a reasonable amount of time (although it felt like we were there for an eternity).

No news yet. Spencer's blood counts are low. He is neutropenic, and we are supposed to start chemo day after tomorrow. His white counts were 0.7, or something like that. His red cells are just over 9. They are supposed to let us know if we should give him neupogen shots today and tomorrow to hopefully bring his counts up before chemo begins. I guess it's good that we didn't know how bad his counts were, or we probably wouldn't have taken him to the zoo, but I'm glad that they got to go--he had such a good time.

Mike is calling the hospital about now. Hopefully we'll have some news in the next hour or so, but it could be a few days before we know anything for sure.

Shauna

Sunday, July 11, 2004 10:10 AM CDT

Shauna here. I've decided that I need to repent for the cranky tone of my last journal entry, so I have nothing but happy news to report this time. Mike, Annie, and Spencer had a smashing time in San Antonio. They had a good time at the zoo and the hotel swimming pool. They ordered pizza into the room and slept all together in the king bed. The kids thought it was pretty great, and Mike, although pretty worn out, had a good time, too. I put pictures in the photo album from the trip.

Sophie and I also had a really fun weekend, shopping and eating out. I had forgotten the freedom of having one baby. I got out the door when I wanted to, and napped while she napped. It was just the break I needed to face the week that's coming up. Mike and the kids got back last night, and everyone slept soundly.

Today we are all going to go to church together. I don't know what Spencer's counts are, but maybe that's best. They have to be the highest that they'll get this cycle, cause he starts chemo this week again, so we are going to go, at least for the first hour all together.

And the most exciting news of the weeekend is that we got a new Jones cousin. Mike's brother Todd and his wife Melissa had their 5th boy on Friday. We are so SO excited for them!

I'm feeling really calm about tomorrow (must be all the prayers). We will keep everyone posted as we find out anything.

Shauna

Friday, July 9, 2004 11:08 AM CDT

Spencer's nurse wasn't there yesterday when we went to the clinic, so he had a new nurse access him. It made for a little bit more of a traumatic experience, but it went pretty quickly, and we were home before 1:00pm. I'm really tired of that drive. It's a 30 minute commute one way, depending on traffic, and I (Shauna) could make it with my eyes shut, I think. Yesterday morning I woke up after Sophie had had a really rough night, so we were both extremely tired and she needed to sleep in, but I had to wake her up to take her with me to the hospital. Spencer was cranky and Annie was whiny. I just wanted to climb back under the covers and ignore the fact that this responsibility never goes away. It's worse on weeks where we have to go in more than once, the kids get tired, I get tired, everyone gets short tempered, and I just wish we could stay home and take good long naps instead of loading up in the car to get chemotherapy. The nurse asked how we were all doing. I said that we were fine, but tired of cancer. She said, "You look worn out." I don't know how flattering that comment was suppsed to be :0), but it's how I'm feeling this week.

Then, yesterday afternoon, Annie's orthopedic surgeon's office called to tell us that we had missed an appointment earlier in the day. I made the appointment 2 months ago when she got her splint off, and no one called to remind me of the appointment, so I totally spaced it. I was really frustrated about the whole thing. So, she is scheduled to go in next Thursday, which will be the day that Spencer is coming off of his iv's from his next VAC treatment, which is going to be a really bad day to drive all the way across Austin to go to another doctor's appointment, but it was the only time that her surgeon could see her, so we'll be making the trip. . .plus paying another $30 specialist co-pay, making next week's co-pay/parking fees total well over $100. Oh, well. I should be happy that we don't have to pay the total bill, I guess.

Mike is taking Annie and Spencer to San Antonio this weekend to stay in a hotel and go swimming and go to the San Antonio Zoo. We were all going to go together, but Mike decided that I need a break from the kids, which is probably more true than I'd like to admit, so Sophie and I will be staying home and running ALL of the errands and doing all of the chores that have been ignored because we are constantly at the hospital or stuck at home because of low blood counts. I'm really looking forward to the productiveness of it all--and I think Mike is looking forward to spending a little quality time alone with the kids. Annie is WAY excited to go to the zoo. She has packed her suitcase and is counting down the hours to Mike's return from work.

Well, Spencer needs some cheese. I have to go. We will be fasting and praying on Monday for Spencer's scans. Anyone who would be willing to join us in our fast is appreciated. Getting him to remain calm and hold still is probably our biggest worry of the day. Dr. Sharp said that he would ask for the results to be phoned in as soon as possible, so we should have the results Monday afternoon. I don't want to get my hopes up on that one, though. It may not be until our chemo appointment on Wednesday that we find out, but we will let you all know the results as soon as we get them. Thank you for checking on us and for keeping us in your prayers.

Shauna

Thursday, July 8, 2004 8:15 AM CDT

UPDATE: Spencer's scans are scheduled for Monday morning at 10:30am. We will probably have to be at the hospital at 8:00 or 8:30.


So, Simon and Garfunkel ROCKED! Mike and I had so much fun. The Everly Brothers were there, too, and sang "Wake Up, Little Suzie" and "Let it Be Me." It was such a nice escape. They sang all the good Simon and Garfunkel songs, and then "American Tune" (one of my favorites) and "Slip Slidin' Away" (another of my favorites). Anyway, we loved it and had a great time.

Yesterday, we went in for blood work and vincristine, but were told that they wouldn't do vincristine yet because he had gotten it on Friday last week, and they'll only move it up a day a week, so we are going in AGAIN this morning to try again. Spencer's counts are decent. His white blood cell count is still only 1.8, but it doesn't seem to come up above that much these days ever. (Normal counts are something like 4.5-12?)

When we got home yesterday the kids went outside and swam in our little inflatable pool in the back yard. They had a good time. It is so hot here these days, that even the pool doesn't cool them off well enough to stay out for more than an hour. It's been pretty humid, too, so that makes it feel hotter than it really is. I tell you what, we are all homesick for Utah this summer, where you can go into the shade and actually be cool. (sigh)

Well, we are off to the hospital. Hopefully it will go quickly and we'll be home before noon.

Shauna

Tuesday, July 6, 2004 2:39 PM CDT

Mike had the day off yesterday, so we got to enjoy an extended weekend of family time, which was great. We drove 30 minutes north to Georgetown, to a little "Shakes" shop, where they serve the BEST frozen custard in the world! It is so good, it's worth driving for an hour to get some. Plus, the kids think it's fun to get out of the house, even if it's just in the car.

Today has been a quiet day. I've been cleaning like a mad woman. We just don't have that many days where I can spend the whole day cleaning, so I have to take advantage of them as they come. And Mike and I are VERY excited, because we are going together tonight to a Simon and Garfunkel concert. A VERY kind friend is coming over to watch our kids while we go. We are really looking forward to another night out. Tomorrow is back to the clinic for vincristine and blood work. I'm hoping that Spencer's counts are on the rise.

I'm anxious for next week's scans. Mike keeps reminding me that it does no good to worry, but I can't seem to follow his advice very well. :0)

I have to go get Sophie more lunch.

Shauna

Sunday, July 4, 2004 6:50 PM CDT

Happy Fourth of July! We have had another busy past few days. Friday, Spencer went, along with Annie, Sophie, and I (Shauna) to the clinic for blood work, vincristine, and neupogen. His white blood cell count was still only 0.8, so we have continued neupogen through the weekend. While we were there, Spencer played with a little girl (19 months old) named Amy who also has rhabdomyosarcoma. She was diagnosed on Valentine's Day, exactly one month after Spencer's diagnosis. She was very cute and they played pretty well.

Yesterday morning, Mike and I took the kids to the Round Rock Fourth of July Parade. It was pretty fun, but it got really hot and muggy and the kids were begging to go before it ended, so we did. We stopped by Sonic on the way home and got everyone lunch, so the kids thought they had had a pretty good day. Then, Mike went to see the new Spider Man movie with a friend, while I did some much needed yard work. Now, before everyone starts thinking Mike is a slave driver, I really really like to do the yard work and Mike has to fight me over it. I won, so I mowed and edged the back yard and Annie and I stained the swing set. It looks much better now. Then, last night, we got a babysitter and Mike and I went on a date with some friends to a really fancy Italian restaurant. It felt great to get out and enjoy adult company for a while.

Today has been busy. I played the organ and taught a lesson at church, and Annie had the scripture and prayer in Primary. Of course, Spencer had to stay home because of low counts, but he seems to be feeling well, and we gave him his last shot of neupogen today, so we get a break for a few days at least. He goes in again on Wednesday for his next Vincristine dose.

OH, and we found out on Friday when I took him in that our new insurance doesn't count co-pays in the out-of-pocket maximums. We were originally told that they would be counted and that we wouldn't have to remeet anything the rest of this year, but apparently it was worded poorly, and after much discussion between Mike's employer and the insurance company, co-pays never go away, no matter how much we have paid in a year. So, we have to pay the $30 specialist co-pay EVERY time we go to the clinic. This may influence our decision to do the week-long topotecan treatments at home. If we do them as an in-patient hospital stay, it's free for us. If we do them between home and the clinic every day, we wind up paying $30 a day, so $150 dollars for the treatment. It doesn't make a lot of sense to us, because we would be saving the insurance thousands and thousands of dollars by doing it from home, but it will cost US a lot less to do them in the hospital. Those co-pays are REALLY going to add up fast, I'm afraid. Oh, well. I guess we should be grateful that we have insurance at all, right?

Well, I have to go break up a fight between Spencer and Sophie. Those two. . .

Shauna

Thursday, July 1, 2004 10:26 AM CDT

Spencer's fever stayed low enough to avoid a trip to the clinic, and today he feels fine again. Tomorrow we go in for blood work and vincristine.

We also have some big news at the Jones household--Sophie took her first steps on Monday! She has, up til now, always acted very offended and insulted whenever we try to suggest that she walk. She drops to her knees and whimpers indignantly. Well, on Monday, I walked through the room where she was playing with Spencer, and saw her take four steps in a row, then just stop and stand there. I started clapping and said, "YEA, SOPHIE! GOOD JOB!" whereupon she immediately dropped to her knees and started whimpering because she had been caught. She refused to do it again for me, but has since decided that the gig is up and we know she can walk, so she'll take four steps in a row here and there throughout the day. So, it only took her 16 months and three days to take her first steps, just missing Spencer's record of 17 months by a few short weeks.

I'm really hoping that Spencer's white blood cell counts are up tomorrow. We have been stuck inside the house the whole week. It's been raining all week, so we couldn't even go play in the back yard or go on a walk, and his counts are so low that we can't go anywhere public, so we've all been going a little stir crazy. Hopefully the weather and his counts continue to improve so that we can get out of the house, at least for a little while this weekend.

Shauna

Wednesday, June 30, 2004 8:05 AM CDT

Okay, quick update. Monday, Spencer got a red blood cell transfusion which took up a good chunk of our day. His white blood cell count was 0.2, and we are continuing with the nuepogen injections through Friday. Tuesday I woke up and realized that Spencer didn't receive his Vincristine on Monday along with the blood and neupogen. So, I called and they said that we could do it at his blood work check this Friday and then they will slowly scoot it back so we get back on scedule.

Yesterday, Spencer started running a low-grade fever. It's vascilating between 99.5 and 100.5. I'm going to call this morning, and may end up going in for blood cultures today, in which case, Spencer could get his vincristine today and we wouldn't be very off schedule.

Hopefully, we will have a quiet week and Spencer's fever will resolve itself.

Shauna

Sunday, June 27, 2004 2:14 PM CDT

We are happy to report that Spencer is no longer tied to an iv bag. It took him a little while to readjust to not having to drag the bag around with him everywhere he went, but once he figured it out, he was running up and down the stairs and heading from room to room, just because he could. We were all very relieved to have the week over and the chemotherapy done. We started neupogen yesterday, too, which I hate and love all at the same time. I love that it helps his immune system, but it is getting harder and harder to give him his shots as he gets bigger and stronger and wigglier. It takes both Mike and me to hold him down to get the shot done, and even then, sometimes he moves while we're doing it.

Tomorrow will probably be a red blood cell transfusion along with his vincristine dose for the week. This week was the half way mark in Spencer's treatment. We get to start counting down the weeks now. It's been a while since we posted his treatment schedule, so I thought I'd remind everyone of what the rest of his year looks like. He receives four different chemotherapy drugs--Vincristine (V), Actinomycin-D (A), Topotecan (T), and Cytoxan (C). The evaluations are when they do scans to check for a return of cancer.:

Week 22 / June 28, 2004/ V
Week 23 / July 5, 2004/ V
Week 24 / July 12, 2004/ VAC/Evaluation
Week 25 / July 19, 2004
Week 26 / July 26, 2004
Week 27 / August 2, 2004/ VTC (Week-long chemo)
Week 28 / August 9, 2004
Week 29 / August 16, 2004
Week 30 / August 23, 2004/ VAC
Week 31 / August 30, 2004/ V
Week 32 / September 6, 2004/ V
Week 33 / September 13, 2004 / VTC (Week-long chemo)
Week 34 / September 20, 2004 / V
Week 35 / September 27, 2004 / V
Week 36 / October 4, 2004 / VAC
Week 37 / October 11, 2004
Week 38 / October 18, 2004
Week 39 / October 25, 2004 / VTC (Week-long chemo)
Week 40 / November 1, 2004/ Spencer turns 3 on 11/3
Week 41 / November 8, 2004
Week 42 /November 15, 2004 / Evaluation

The next week is Thanksgiving, and if we have made it this far and are really off-treatment, it will be QUITE THE CELEBRATION OF THANKS!

When Spencer was first diagnosed, we were told two things that have really rung true. The surgeon, Dr. Smith, told us that it was like driving down the freeway and getting hit by a Mack truck. There's no way to see it coming, but in an instant your life is changed forever and will never be the same again. Then, one of the nurses who took care of Spencer during his first hospital stay said that although our life would never be normal again according to the "normal" that we were used to, we would eventually go back to normal life, it would just be a different normal. How true that is.

Last night as Mike and I were going to bed, he said, "Have we arrived?" I said, "What do you mean?" "Have we arrived at the new normal? I think we have." I agreed. It's second nature now, heading to the hospital several times a week. Spencer knows exactly what to expect and wakes up every morning saying, "I ready go bye-bye." The clinic is our home away from home, and it has become our "normal" way of life around here. Then, when he goes off-treatment we will have to find yet another "normal," of regular scans and of being vigilent for any signs of relapse.

Thank you to all of you who have stuck with us during the last almost-six months, and who will continue to stick by us during the next almost-six. It is comforting to know that we are not alone in this journey, even though some of you are over a thousand miles away. We still feel encouraged by your participation in our lives and struggles. Thanks to all of you for keeping us in your lives and in your prayers. We really appreciate it more than we can say.

Shauna

Friday, June 25, 2004 7:52 PM CDT

The final day of Cytoxan and Topotecan for this round! Spencer will stay on iv fluids until tomorrow around noon to make sure the chemo gets flushed out of his body sufficiently, and then we can deaccess him here at home. Today went pretty smoothly and we didn't end up doing the blood transfusion after all. His red counts are holding enough to wait until Monday for blood, which was a nice addition to (or rather, subraction from) our day.

In other crazy Jones news, yesterday Annie started running a fever and complaining of a headache, watery eyes, and a runny nose. She's been fighting allergies for the last several days, but the fever was new. Then, last night around 10:00 (while Mike and I were finally on a date, of course) she woke up crying that her ear hurt, with a fever of 101.5. So, this morning, after another long night of waking up every few hours to change Spencer's diaper and iv bag and such, I got up early and got ready so I could call the pediatrician and get Annie an appointment as early as possible. I took her in at 8:00, and sure enough she has a raging ear infection. So, I tried to drop off her prescription on the way home, but the pharmacy wasn't open yet. So, I left the prescription for my mom to fill, and I turned around and headed down to the hospital with Spencer.

Spencer had a pretty happy day of chemo. He was in pretty good spirits until a little after noon, when he got hungry and decided he needed some cheese, which of course I could find NO WHERE in the hospital. He ended up settling for cheetos, his old favorite which he hasn't had for a good while. Just before Spencer finished with his chemo for the day, we ran into a friend whose little boy (5 years old) has non-hodgkin's lymphoma. I was sad to learn that he has recently relapsed. It's so crushing for me to hear that word any more. It seems to be EVERYWHERE we turn. It's heartbreaking to see these parents and children who have fought for so long, thinking that they can see the light at the end of the tunnel, only to have the light shut off with a CT Scan or an MRI. This little boy was nearing the end of his treatment when this happened, now they have to start anew with stronger chemo, radiation, and stem cell rescue. I have seen so many relapses lately, that it makes me afraid to hope that we will actually get to November and beyond with clear scans.

Speaking of scans, Spencer's next scans are the week of July 12th, so they are coming up. Please pray for us. I'm already a wreck. I truly believe that the Lord is mindful of us and that His vision far exceeds our own. It's still a struggle, though--to want something SO badly and love someone SO much and then live every day knowing that what you want may not be what the Lord sees that you need. Proverbs 3:5 says, "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." I don't pretend to understand all of the reasons that we are going through this trial, or why anyone goes through any difficult trial, but I know that the Lord loves each of us and will bear our burden when we can't bear it any more on our own.

Thanks for your prayers and faith on Spencer's behalf. We appreciate the love that we feel from our family and friends and total strangers. Please continue to pray for our family, we really feel the strength of your prayers.

Shauna

p.s.--new photos in photo album

Friday, June 25, 2004 7:52 PM CDT

The final day of Cytoxan and Topotecan for this round! Spencer will stay on iv fluids until tomorrow around noon to make sure the chemo gets flushed out of his body sufficiently, and then we can deaccess him here at home. Today went pretty smoothly and we didn't end up doing the blood transfusion after all. His red counts are holding enough to wait until Monday for blood, which was a nice addition to (or rather, subraction from) our day.

In other crazy Jones news, yesterday Annie started running a fever and complaining of a headache, watery eyes, and a runny nose. She's been fighting allergies for the last several days, but the fever was new. Then, last night around 10:00 (while Mike and I were finally on a date, of course) she woke up crying that her ear hurt, with a fever of 101.5. So, this morning, after another long night of waking up every few hours to change Spencer's diaper and iv bag and such, I got up early and got ready so I could call the pediatrician and get Annie an appointment as early as possible. I took her in at 8:00, and sure enough she has a raging ear infection. So, I tried to drop off her prescription on the way home, but the pharmacy wasn't open yet. So, I left the prescription for my mom to fill, and I turned around and headed down to the hospital with Spencer.

Spencer had a pretty happy day of chemo. He was in pretty good spirits until a little after noon, when he got hungry and decided he needed some cheese, which of course I could find NO WHERE in the hospital. He ended up settling for cheetos, his old favorite which he hasn't had for a good while. Just before Spencer finished with his chemo for the day, we ran into a friend whose little boy (5 years old) has non-hodgkin's lymphoma. I was sad to learn that he has recently relapsed. It's so crushing for me to hear that word any more. It seems to be EVERYWHERE we turn. It's hearbreaking to see these parents and children who have fought for so long, thinking that they can see the light at the end of the tunnel, only to have the light shut off with a CT Scan or an MRI. This little boy was nearing the end of his treatment when this happened, now they have to start anew with stronger chemo, radiation, and stem cell rescue. I have seen so many relapses lately, that it makes me afraid to hope that we will actually get to November and beyond with clear scans.

Speaking of scans, Spencer's next scans are the week of July 12th, so they are coming up. Please pray for us. I'm already a wreck. I truly believe that the Lord is mindful of us and that His vision far exceeds our own. It's still a struggle, though--to want something SO badly and love someone SO much and then live every day knowing that what you want may not be what the Lord sees that you need. Proverbs 3:5 says, "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." I don't pretend to understand all of the reasons that we are going through this trial, or why anyone goes through any difficult trial, but I know that the Lord loves each of us and will bear our burden when we can't bear it any more on our own.

Thanks for your prayers and faith on Spencer's behalf. We appreciate the love that we feel from our family and friends and total strangers. Please continue to pray for our family, we really feel the strength of your prayers.

Shauna

Wednesday, June 23, 2004 5:53 PM CDT

Day 3 of cytoxan and topotecan. Spencer slept solidly last night for a good 12 or 13 hours, so he was in pretty good spirits when we got to the clinic today. He was chipper and playing happily through the decadron and zofran, and then about 30 minutes into the cytoxan, he started getting cranky again. He just got worse the more chemo he got in his system, by the time we were heading home, he was in a royally bad mood.

I think he has done better today, though, than yesterday. He seems less nauseated and is playing hard tonight with Annie, Sophie, and Grandma Sorensen. We have two more days of chemo to go, and then fluids through Saturday. Spencer's blood counts are dropping really fast already, and he will probably need blood on Friday, which will mean we will be there the ENTIRE day. His white cell count is already down to 1.3, so we have to start being careful with handwashing and germs.

Mike and I are going to try to get a date in tonight after the kids go to bed. We're both so exhausted from being up every 2 1/2 hours all night long for the last two nights that I'm not sure how long the date will actually last, but it will be nice anyway.

Today was Ian's funeral. Please remember to keep his family in your prayers, and hug your own kids a little tighter tonight. Thank you for stopping by to check up on us.

Shauna

Tuesday, June 22, 2004 7:35 PM CDT

Shauna says that I've been neglecting my share of the caringbridge load, so here I am. In all fairness to me, I'm pretty sure that there's a perfectly reasonable explanation for why I haven't written here for such a long time. I'll let you know when I think of it.

Spencer is cranky with a capital "CRANKY" today. He's on quite a cocktail of drugs right now, including a steroid to induce his appetite and supress nausea, and it's apparent that he just doesn't feel good. He's tired, too, which compounds the crankiness. He finally zonked out on the floor about 20 minutes ago.

These week-long chemo treatments are rough on the whole family. Spencer has to go in to get a measured dose of chemo once a day for five days straight and he has to be on IV fluids 'round the clock. He has a portable IV pump in a little backpack that he drags around like a ball and chain, and we're constantly paranoid that the tube will snag on something. Even Annie and Sophie seem to be worn too thin right now. We're grateful to have Shauna's mom here with us to help out or we'd be sunk.

I think Spencer is going to sleep in with us tonight so that we can be close enought to hear his pump "beep" if the tube gets kinked. Wish us luck with that. :)

-Mike

Monday, June 21, 2004 6:01 PM CDT

Well, our prayers were answered--Spencer started chemo today. His white blood count was up from 0.9 on Friday to 9 today. And, there only has to be 24 hours between neupogen ending and chemo starting, so we went ahead with his first day today. I (Shauna) got there with Spencer about 9:30 this morning and after the blood count results came back, Spencer was put on fluids until about 12:30, when he was hydrated enough to start. He got decadron and zofran as a preemptive strike against nausea, and then got vincristine, cytoxan, and topotecan. We finished about 3:30. He was so tired and worn out, but he didn't want to leave. He loves to be there. He cried all the way out to the car, and then half of the way home until he fell sound asleep and is still sawing logs as I type. He wore his brand new t-shirt today that says "busy kickin' cancer's butt" on the front. He got lots of compliments. Everyone wanted to know where we got it. Now we know what to get all of our cancer friends for Christmas! :0)

It was a day of mixed emotions for me today, sitting in the chemotherapy. I couldn't help but think of little Ian and his family. There was a young boy there with his mom who had just been diagnosed with cancer, and the social worker was going over all of the stuff that she went over with us when Spencer was diagnosed. There were several children in there today that I had never met before, and a few that I knew. One child was there with a big cake in celebration of going off of treatment and into remission. I overheard one of the doctor's talking to one of the cancer parents. He said that his parents were not very pleased when he went into oncology. They thought it would be a depressing occupation, with so much sadness and morbidity. But, he said that there is so much happiness in his job, and that times like these off-treatment parties make it all worthwhile. He said that people don't understand that ANY place filled with children is bound to be filled with playing and laughter. He's right. There's so much pain in these children's lives, and at the same time so much hope and joy. It's a peculiar mixture to witness.

I need to go get Spencer some dinner. We'll be back at the clinic first thing tomorrow morning for another dose of cytoxan and topotecan. Hopefully it will go a little faster tomorrow than today.

Shauna

Sunday, June 20, 2004 11:45 AM CDT

HAPPY FATHER'S DAY! This is the third time I have retyped this journal entry. The site keeps losing my entry. Let's hope the third time's the charm. The kids were very excited to give Mike his presents this morning. We made him a t-shirt that says, "Our Dad Deserves a Hand," and the kids all put their hand print on it. Annie drew him a picture of a rainbow (her favorite thing to draw these days) and had me type up a list of the reasons that she loves her daddy, and then we framed the two. We also gave him a long overdue updated picture of each of the kids for his desk at work. I gave him a framed picture of Annie and Spencer two Father's Days ago, when Spencer was 6 months old, so I decided it was time for a new picture. Oh, and Annie decided that her dad NEEDED a new soccer ball so that he could play soccer with her and Spencer, so that's just what he got. Then, we had a breakfast of yummy french toast, along with several rousing renditions of "Happy Father's Day to you."

Our happy spirits have been dampened today, though. We learned later this morning that Ian Davideit, the little boy that I wrote about a week or so ago, lost his battle with cancer this morning, passing away around 6:00am. I am heartbroken by the news. I have come to love that little boy and his family, and I ache for his parents, for his big sister who is just one year older than Annie, and for his little brother who is just a few months younger than Sophie and who will never remember his big brother and how darling, strong, and brave he was. Ian had a really special bond with his dad. What a tragic Father's Day for this father. Please stop by and leave your condolences in their guestbook. I know that they don't know any of you personally, but I can attest to the fact that any words of encouragement and comfort from ANYONE truly help when you are feeling beaten down. Our prayers are with the Davideit family today.

In other news, Spencer got his transfusion yesterday. Mike took him and spent almost the entire day at the hospital to get the blood, but Spencer came home a rosy cheeked/fingered/toed little boy, which made his mother very very happy indeed. His white count is still terribly low, so he got neupogen yesterday and a double dose today (it was AWFUL injecting that much fluid into one spot!). So, because he got neupogen today, he will not be able to start chemo tomorrow. Hopefully it won't be too many days before we can start, though. My mom is flying in tonight, which we are all very excited about. I think Annie is especially excited. She has a special affinity for her grandmas.

Well, I'll hope this actually posts this time. Thank you for checking in on us. We appreciate all of your love and support. Please continue to keep us in your prayers--we need all we can get.

Shauna

Friday, June 18, 2004 10:36 AM CDT

UPDATE (4:00pm): Sure enough, Spencer is even lower on red blood cells. So, they gave us a choice of checking into the hospital tonight for a transfusion, or going in the morning. Since I was there with all three tired, cranky kids, I opted to get to go home this afternoon and go back in the morning when Mike is home to split the kids with me. Actually, I think Mike will take Spence in the morning. His white cell count is still really low, too. They are not sure whether or not he'll be able to start chemo on Monday. It may get pushed back to Wednesday. We are hoping he can go ahead on Monday, since my mom will be here, and we want to do the chemo while we have help, and not for 4 days after the help leaves. Pray that his counts recover quickly. --Shauna


Spencer still looks really pale to me this morning, so I called and left a message at Dr. Sharp's office and am waiting to hear back from them. I suspect he'll need to go in to have his blood checked. And of course today is his 6 month review with his Speech and Occupational therapists, which we've already had to reschedule once.

Yesterday was a fun day. The kids and I (Shauna) worked on Father's Day surprises for most of the day. They had a good time. We played outside, too, for all of 15 or 20 minutes before the heat and humidity drove us back indoors. But, not before I got some really cute pictures of the kids. I'll put a few in the photo gallery. Spencer's Early Childhood Intervention (ECI) Specialist came yesterday afternoon and they had a fun time playing together.

The Enrichment activity at the church last night went well, too, and I'm relieved that it's in the past and I don't have to plan anything for another month. Mike kept the kids at home, and he said that they had a good time playing together. He went into Annie and Spencer's room at one point and Annie was on her bed playing baby with her doll, and Spencer was on his bed playing baby with Sophie. Sounds pretty cute to me.

We are excited for a weekend of calm before the storm next week of a week-long chemo treatment. Thank you for your prayers and support. We really appreciate everyone caring about Spencer and our little family.

Shauna

Wednesday, June 16, 2004 7:01 PM CDT

We had quite the experience at the pediatrician's office today. Things went quite smoothly for the most part. Sophie has fallen off the bottom of the growth charts on weight. She is 18 pounds, 10 ounces at 15 1/2 months. She's the 25th percentile on height at 29 inches. It is just so foreign to us to have such a petite child. Annie was 95th percentile for height and 80th for weight, which is more what we are used to. Both girls seem to be relatively healthy. Sophie will have her iron levels checked at her 18 month check up, and she got two immunizations today.

I talked to Dr. Harvey about Annie's stomach. She is still complaining of a tummy ache almost on a daily basis. So, we got kits to do stool samples and Dr. Harvey ordered blood work. That's where the day started to unravel. FAST! Annie started FREAKING OUT about getting a poke. I tried to reason with her and tell her that Spencer gets blood drawn all the time and he was very brave and she could be brave, too. But, that obviously failed to ease her anxiety. I literally dragged her kicking and screaming into the lab and it took three nurses and myself to hold her down to get the draw. And she was screaming bloody murder the entire time at the top of her lungs. "GET THAT THING OUT OF ME! GET THAT THING OOOOOOOOOOOOOOOOOUUUUUUUUT OF MEEEEEEEEE!" She was so stressed and tense that they had a hard time getting her vein and then getting enough blood. In the meanwhile, I had to set Sophie on a chair so that I could help hold Annie down, and she was terrified by all of the strangers and Annie's screams, plus she had just gotten her own shots and wanted to be held, so she was in tears, too. I'm telling you, it was NOT a pretty picture and I was thinking the whole time, if it were Annie that had cancer, we would be in HUGE trouble--she does NOT do well with pokes. Or pain. Or anything close to pokes or pain. But, we survived it and Annie got several Disney princess stickers out of the whole ordeal, so she's recovering nicely.

Mike and I are feeling a little better today. I ran a fever for part of the day, and it broke late this afternoon, and I'm really hoping it's gone for good. We'll see, I guess. Tomorrow, Spencer's Early Childhood Intervention Specialist is coming to visit him, and then we have Enrichment at the church tomorrow night. I will feel a lot of relief when tomorrow night is behind me.

Spencer looks really pale to me today. I don't know if it's just paranoia on my part because I'm on the lookout for paleness, but his energy is up and he has once again refused to nap, so I'm hoping he's okay. Tomorrow, if he's not looking a little more pink, I'll take him in for blood work. That kid, with half his normal blood counts, can run circles around me with my normal blood counts. He amazes me!

Tonight we ordered in pizza, since mom and dad are still under the weather. The kids thought it was pretty fun. We had a pizza picnic in the family room and watched a Disney cartoon as a family.

Thanks for checking in on us, and for the guestbook entries. They really keep us going.

Shauna

p.s.--I put some different pictures on the photo page for your viewing enjoyment! :0)

Tuesday, June 15, 2004 6:35 PM CDT

It seems that Mike and I have caught whatever it is the kids had last week. We are both feverish and achy and wondering where OUR moms are! :0) I took Spencer to see Dr. Brown, the radiation oncologist, today for a follow-up visit. The kids colored pictures and we made brownies last night for Family Home Evening to take as a thank you for all of their kindness and good care over the last month. Dr. Brown said that everything seems to be going well after radiation, and we will come back for check-ups every six months for the next 2 years. I took all of the kids so that everyone could meet the other 2/3rds of our children. The girls were very well behaved, but Spencer was pretty angry that he didn't get to go back to the radiation room for a treatment. Crazy kid--I don't know why he has come to love that so much. We rode the elevator up and down for a while before heading home for lunch and naps.

Tomorrow is the girls' check-up with the pediatrician. Mike is going to stay home with Spencer during it, since his counts are so low that we don't dare send him to anyone's house. We are both feeling pretty lousy today, so we're praying that this illness passes before Spencer catches it and ends up in the hospital. Please keep us in your prayers, as well as the many other children who are also struggling with their own battles against cancer.

Shauna

Shauna

Monday, June 14, 2004 3:32 PM CDT

Well, no transfusions today. Spencer's platelets are recovering on their own, and although his red blood cell count was just above 8 and Dr. Sharp would have definitely transfused, the doctor that Spencer is seeing while Dr. Sharp is on vacation feels that he will be able to recover from the low counts on his own. We are supposed to watch him over the next few days and if he seems more pale, more tired, or more easily winded, we should take him in for blood. I hate having such vague guidelines. It's so hard to tell if he is MORE pale. He's really pale, but it's hard to know if he's more or less pale one day than the day before.

Anyway, his white blood cell count is still really low, but should start coming up this week. He got his vincristine and neupogen today, so we don't have to give him neupogen the rest of the week and if all goes well, we won't have to go in until next week when we start the week-long topotecan chemotherapy treatment. We are NOT looking forward to that one. We've decided to continue to do it between home and the clinic instead of getting admitted to the hospital. Spencer is just happier at home, even if the same bad stuff is happening to him here as would happen in the hospital. So, we'll keep doing them from home as long as we can.

Mike started this week as a Computer Science Corportation employee, and is officially no longer with Sears. On Wednesday, Sophie has her 15 month check up and Annie has her 5 year check. Thursday evening I'm in charge of our Enrichment Activity at the church, and Friday is Spencer's rescheduled 6 month review from Early Childhood Intervention. Should keep us all hopping. We hope that Spencer's counts keep climbing and we really do get to skip the transfusion this week.

Shauna

Friday, June 11, 2004 1:32 PM CDT

Happy Birthday to Mike!

Everyone who checks in today, please leave your birthday wishes in the guest book--I'm sure Mike will love to hear from you! And for a happy birthday surprise, Spencer didn't have to have transfusions today. His counts are low enough for it, but they are waiting until Monday to transfuse. His white counts are 0.3, so he will continue neupogen over the weekend.

Annie's fever is gone and she is back to normal. Sophie's fever left for a few days, but yesterday morning, she had a rash all over her face, chest and back. And then last night her fever shot up to 103. I had a moment or two of panic, because she hasn't had her chicken pox vaccine or her Measles/Mumps/Rubella vaccine either because they are live virus vaccines and could be passed to Spencer, and they could be life threatening for him. But, the rash isn't itchy and today her fever is gone again. I don't know what it is--I tried to get her into see the pediatrician today, but they are booked solid today and said that I could take her this evening to the after hours clinic. I do NOT want to do that, because that is the germ mecca of the city. That's just what we need--to bring home three more bugs to our house. So, we are just going to watch it and see how she does, and pray that Spencer doesn't get whatever it is.

Tonight Mike and I are going out on a much needed date. Our friend is very graciously taking our kids, even though Sophie is not up to par. She has already watched Sophie this week and said that since her boys are already exposed, she's not too worried about it. What a saint!

So, we are praying for a quiet weekend. I don't know if it's too much to ask, but it sure would be nice. Thanks to everyone for checking in on the Joneses.

Shauna

Wednesday, June 9, 2004 8:15 AM CDT

Well, I guess the peace of the last entry couldn't last forever--or even 24 hours. Monday night, Sophie was acting like she didn't feel well and then was up every hour all night long, and Spencer kept waking up and wanting me to go in and hold his hand while he went back to sleep. Tuesday morning, Sophie woke up with a fever of 101. So, I left her at the neigbor's house while I took Spencer and Annie to the hospital. She was still feverish when I put her to bed last night. And around 9:00, Annie woke up with the same temperature.

So far, no fever for Spencer. I'm really hoping that the fever he had on Friday was this same thing, but it doesn't really seem like the same thing to me, I guess we'll wait and see. Spencer was CRANKY yesterday. I mean seriously cranky. He didn't even want to hold his dinosaur when we went to the clinic. He was throwing tantrums all over the place. It was NOT a fun day. We went in for vincristine and blood counts. When Jennifer came in to access Spencer, I realized that I had forgotten to put his numbing cream on before we came. I've gotten used to having him accessed all the time for radiation, and I totally spaced it. So, thankfully, they have cream there, and we put cream on and waited an hour or so for it to work. He also got his neupogen there through his tube, so I didn't have to give him the shot at home, which was great. His counts are okay--hovering above the transfusion level. We are going back in on Friday for blood work and possible transfusions.

Last night was awful again. It started out okay. I put Spencer and Annie down together around 7:30pm and Annie went right to sleep. Spencer, on the other hand, kept crying for me to come in and sit by him, which I couldn't do because I was trying to get Sophie fed and ready for bed. He got totally worked up and was screaming so loud I was afraid he was going to wake Annie back up, so I got him up and let him watch TV with me for a bit while I got Sophie ready for bed. Neither he nor Sophie would settle down and go to bed. Then, Annie woke up with her fever and chills at 9:00, so I had all three children awake and cranky. I finally got Annie back to sleep around 10:30, but was still fighting Sophie and Spencer at 11:00. I'd get one down, and the other would start crying and screaming, so I'd go into that room, and then the other one would start crying and screaming. It was back and forth between kids until almost midnight. Then, when they both finally passed out from exhaustion, I went to bed only to be awakened by Spencer or Sophie alternatingly all night long. Needless to say, I'm wiped out and really ready for Mike to get home today! Hopefully, the kids and I can coordinate a group nap today (wish me luck on that one!)

We met another rhabdomysarcoma survivor at the clinic yesterday. Garrett is a cute guy who recently finished his treatment! It was great to talk to his mom for a while. It's funny, the immediate connection and friendship that you feel when you get two parents together with children with cancer. Garrett's treatment was really similar to Spencer's so it was good to talk to someone who's farther along the path to recovery. We now have new friends!

Well, I need to get the kids breakfast. Let's hope for a quick day and no more fevers!

Shauna

Monday, June 7, 2004 8:27 PM CDT

A quiet day at the Jones household. Mike left at 4:00 this morning for Chicago. Poor guy--his first day of no radiation, and he STILL has to get up before the sun! He arrived safely and had a full day of work. My neighbor came over at 7:00 to stay with the kids while I ran our van in to get the a/c fixed. Other than that, we spent a fairly quiet day at home. Tomorrow is vincristine. Spencer is bruising some, so I know his platelet counts are down, but I don't think they are low enough for a transfusion yet. At least I hope not. I'm taking the girls with me to the hopsital tomorrow, so I really hope it's a short visit this time. I know you can never COUNT on a short visit, but I'm going to take a chance tomorrow.

The kids miss Mike already. Annie has been crying easily today, and Spencer keeps looking out the front window and saying, "Where's Daddy?" Sophie was upstairs on my lap, when someone knocked on the door. Her head popped up and she said, "DADDY!" No such luck. Tonight when I put them to bed, Spence was crying, "I want Daddy!" Mike usually does bedtime for Annie and Spencer, so the routine just wasn't quite the same tonight, and they noticed. It will be good to have our daddy back at home. He won't get in until late Wednesday night, so they won't see him until Thursday. Hopefully we can all last that long without Dad!

My neighbor is coming over again now that the kids are all down and I'm going to go make a much needed trip to the grocery store. Spencer is on a banana/apple/applesauce/tortilla kick and we are out of all of them. So, I'm going before crisis strikes at breakfast tomorrow morning. Thank you for checking in on us, and for your prayers.

Shauna

Sunday, June 6, 2004 11:09 AM CDT

Good news--Spencer's fever stayed down and Dr. Sharp never called on the culture, so we're assuming it was negative for infection. So, we had a really nice day yesterday celebrating Annie's birthday. She got lots of fun calls from relatives and our neighbors came over for cake and icecream last night. She got ballet stuff, because she is going to take a ballet class in the fall, and she was so excited about her "ballerina birthday." It was cute. She got dressed up and was walking around on her toes all day. We can't believe that our baby is five years old already. So much has happened in those five years, but it has flown!

Mike has to fly out to Chicago in the morning for work. He'll be gone until Wednesday night. Spencer has vincristine on Tuesday and probably a transfusion next week sometime. Hopefully Mike will be back before the transfusions happen. Yesterday's neupogen shot was traumatic for both Spencer and me (Shauna). I thought I had him held down well enough, but as soon as I got the needle in, he started thrashing, and the needle was getting moved around inside his leg. It was awful. I pushed the medicine in as fast as I could, but he bled a lot and cried a long time after it was done, which he usually doesn't do at all, so I felt pretty lousy. I HATE giving those shots, but I'm really glad that there is something to help boost his immune system, so I can't hate them too much.

Mike and Annie are going to church today, and I'll stay home with Spencer. We are all dreading his trip. The kids get so sad when he leaves, and I do, too. We'll pray that things will go smoothly in his absence.

Shauna

Friday, June 4, 2004 3:13 PM CDT

Well, we have good news and we have bad news. The good news is really good news--Spencer is done with radiation! SWEET WAHOO! The radiation group sent him off in style, too. Mike took Spence this morning, and when he got back he said they had given Spencer off-radiation gifts. I was floored by their kindness. They know that Spencer likes dinosaurs, because he brings his favorite dinosaur with him everywhere. The dinosaur has probably been radiated as much as Spencer has. :0) So, they gave him a really big t-rex and a big box FULL of dinosaurs, dinosaur coloring books, a dinosaur sticker book with crayons, and a very colorful, personalized card from everyone. They were all wrapped up in brightly colored gift bags and paper. We were so surprised and humbled by their kindness to Spencer. We are so grateful for their efforts to make the radiation process as painless and comfortable as possible for our little guy.

The bad news is that when they took his temperature after radiation, as they always do, it was over 102 degrees. So, they gave him Tylenol then (7:00am) and I took him into the clinic around 9:00. I had all three kids, because I hadn't asked anyone to watch the girls because I thought it would be a short blood draw visit initially. But, no such luck today. They are doing a blood culture to see if he has an infection, and they gave him Rocephin (an antibiotic) in case it is an infection. Then, one of the nurses deaccessed Spencer so we could go home, but after she did it, she noticed a hive on the top of his head, then one on the back of his head, then that his eyes were red and swelling--he was having a reaction to the rocephin.

So, Jennifer had to reaccess Spencer (without the numbing cream obviously, because he had just been deaccessed) which was awful. Then, she gave him Benedryl, which knocked him out in a matter of minutes, and then another medication to counteract the reaction he was having. While he was sleeping, they also gave him neupogen (to boost his white blood cell count, which started out on Wednesday at 2.4--not good) and we will continue the neupogen for 7 days. Meanwhile, the girls were getting tired and cranky. Sophie wanted to be held, but Spencer was passed out on my lap. Thankfully, one of our favorite nurses, Lori, came and got Sophie and carried her around with her for a long time, which made Sophie happy, and me less stressful.

The child life specialists, Mary and Cynthia, found out that it is Annie's birthday tomorrow (perhaps because she was going around telling anyone who would listen that fact) and they gave her a really cute gift--barbie dress up shoes. Not just one fancy pair, but three. Annie thought life was pretty great. She had been a little sad this morning when Spencer came home with a load of presents and she didn't get anything, so the present today eased her pain. :0)

Anyway, the final verdict on Spencer is that we will wait and see how the next day or so goes. If his fever goes up again, we will take him in. Dr. Sharp is on call this weekend, so he will call us when the culture comes back to tell us if Spence has infection or not. If he does, we'll be admitted tomorrow. We're praying that we won't have to spoil Annie's birthday tomorrow by going into the hospital.

We are deeply saddened today to learn that a caringbridge friend, Ian Davideit, a darling three-year-old boy from New Jersey, just received some devastating news. I found their page several months ago and was really drawn to their family because of the many similarities to our own. They have three children, Ian is in the middle. Ian has rhabdomyosarcoma that originated on his bladder, just like Spencer's. He reminds me of Spencer in so many ways, and I have really fallen in love with this little boy. He has been through chemo, surgery, and radiation, and they were able to remove the original tumor. But, after radiation, scans showed new tumors. They have been trying a topotecan regemin to try to shrink the new tumors, and had scans yesterday to see if the chemo was working. It aparently is not, and they are out of treatment options. Now they are left to wait for the inevitable. It is heart wrenching to me to see this sweet family go through our very worst nightmare. Please stop by Ian's page and sign their guestbook. The address is www.caringbridge.org/nj/ian/ and I know that they will appreciate all the words of support and encouragment that they can get. Please pray for Ian and his family as they go through this sad time.

Well, I need to get the kids down for naps, so I'll go. Hopefully we'll have a quiet weekend as far as health stuff goes. Thanks for all your thoughts and prayers. We love you all.

Shauna

Thursday, June 3, 2004 8:55 PM CDT

Everyone is pretty tired today. And cranky. Besides getting up with Spencer all night long, Sophie had a rough night of teething, and we had to get up with her several times. Sophie is getting all four one-year molars and a front bottom tooth all at the same time. She has been pretty mellow and pleasant through the whole thing, but she had a rough day today. She was not her usual cheerful self and wanted to be held all day, which was hard because Spencer was on iv for over half the day and needed constant monitoring himself. It was a happy hour when we got to disconnect him from his iv pump!

Spencer had his 19th radiation treatment this morning. The nurses surprised us with a quilt that they had quilted for him for his name embroidered on the front. It was such a kind gesture; we were really touched. The nurses there have been great. Everyone has, really. The anesthesiologists have redeemed themselves from their accessing catastrophe at the beginning. We still don't trust them to access Spencer, but they have been great to him otherwise. Joe and Tim (the anesthesiologists) are buddies who have been working together for a long time and they are quite the comic team. Joe made puppets for Spencer one morning from a couple of bags--a daddy size puppet for Joe and a child size puppet for Spencer. Spencer has gotten so that he looks forward to radiation every morning, and I have to think that it has had something to do with the friendly, caring staff there. Mike said today that he thinks Spencer will be sad when radiation ends. We as parents won't go that far, but we have come to really like and appreciate all of the great nurses and Dr. Brown, Spencer's radiation oncologist, and Tim and Joe. We will miss seeing them and are so grateful for the personalized care that they have given to Spencer just about every day for the past month.

Speaking of Spencer, I can hear that he is having a hard time going to sleep, so I'd better go help him. Tomorrow is the last radiation, then bloodwork at the hospital, then we have an appointment with Early Childhood Development for his 6 month progress review. We'll keep you all posted.

Shauna

Wednesday, June 2, 2004 8:23 PM CDT

It was a long, tough day today. Mike took Spencer for his 18th dose of radiation this morning. Then, I (Shauna) left around 8:15 with Spencer for the hospital for chemo. It was a crowded morning at the clinic. There were so many children, and so many of them were crying, all with good cause. There weren't enough chairs for everyone, so I got a blanket and a pillow from one of the nurses and set up a little bed in the corner for Spencer to lay on while he watched Blue's Clues. It took several hours on fluids to get his level of hydration high enough to start the chemotherapy. We didn't even get going on chemo until after noon.

Spencer was really good through it all, even though I could tell he was exhausted. He played with the little clinic doll--Sammy. Sammy is a really cool doll that has a port-a-cath. The kids can do to Sammy what gets done to them all the time. Spencer took Sammy's numbing cream off and scrubbed his port site clean with the little scrubber. Then, I helped him access Sammy, and he pushed syringes of medicine (air) into Sammy's tubie. It was really fun for Spencer, and I think it helped him feel more comfortable about his own tubie. I'm impressed with the progress he has made with his tube. He used to totally ignore it and would scream and grab his chest whenever a tubie was mentioned. Now, he helps to push the medicine into his tube and today he sat and examined his tube between his fingers for quite a while. He's not afraid of it anymore, which is good. We finally got out of the clinic around 3:00pm. Spencer fell asleep on the way home. I stopped and picked up the girls from my friend's house, and by the time we got home, it was after 4:00.

I'm really tired. Every time we spend a full day at the hospital, I come home totally drained. Spencer is really tired, too. But, we did have a break through this evening. Spencer was upstairs watching a movie, and we were downstairs getting something in the kitchen. I heard him moving and I started to freak out because I was afraid he was going to walk off the iv. I ran to the bottom of the stairs, and he was half-way down, dragging his iv backpack along with him. It was a bitter-sweet moment. I was really excited to see him make the connection that he needed to take the pump along with him, but it is something of a sad sight to see a 2 1/2 year old dragging around a big old iv bag and knowing that he figured it out because he has had to deal with it so many times.

We gave Spencer his mesna (to coat his bladder to protect it from the chemo) at 5:00 and at 9:00. We are giving anzemet for nausea instead of zofran this time around. We have to set alarm for 12:30am for that dose and a diaper change. Then we have to set the alarm for a 3:00am diaper change. If we don't change his diaper every few hours when he's on iv fluids, he leaks all over, and then we have a big toxic mess to clean up. Then we have to get up at 5:45am for radiation. And we will run fluids through tomorrow afternoon. He'll get another anzemet dose at 12:30pm tomorrow, and then we can take him off of fluids.

Friday is our last day of radiation! Then, Saturday is Annie's 5th birthday. We will have plenty of cause to celebrate! We might have to have a double party--a birthday/off-radiation party! We need a little celebrating. We are feeling weary of our cancer life. We've only been doing it 5 months, but it feels like forever, and it feels like we have forever left. And there are SO many families who have been doing it for SO much longer than we have. I'm touched every time I go to the clinic, especially on busy days like today, that there are so MANY small children battling this awful, awful disease. Why were we totally unaware of any of them before we became one of them? It's such a battle. I'm amazed at the children that have been fighting this battle for years. I'm exhausted by half of a year. These kids are so tough and so resilient. They never give up hope. They are truly inspirations--every one of them.

There was a mother at the hospital today whose 11 year old daughter has been fighting brain cancer since she was 8. The mother had a shirt on that read:

What Cancer Cannot Do

Cancer is so limited...

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.

A few days ago, I was having a good cry over some scheduling issue with radiation. I was totally sobbing, and Spencer came over to me and put his head on my lap. He kept saying softly, "Mama. Mama" He was so sad that I was sad. He climbed up on my lap and put his head against my chest and let me hold and rock him until I stopped crying. It was the sweetest thing. It just seemed so backward that HE should be comforting ME, but that's how it works most of the time. He is such a stong spirit. He has had so many obstacles in his little life, and he just keeps going. He is truly a hero.

Well, I've written a short novel here, and I need to get to bed before it's time to get up again to give Spence his medication. Please pray for us. We appreciate all of the help we receive. It's hard to be on the receiving end so continuously for such a long time without being able to give back, but we are so grateful for all of the love that we feel from so many of you. Thank you.

Shauna

Tuesday, June 1, 2004 10:13 AM CDT

We had a good weekend. We all went to church on Sunday as a family. It was really great. Spencer went into the nursery for the first time since his diagnosis in January. I took in a bunch of disinfectant wipes and made sure that none of the kids had sniffles. I think it was good for him to interact with other children his age. With his treatment, he interacts with adults all the time, but we tend to shy away from children his age a lot because of the fear of germs and infections. So, it was good for him, and Mike and I enjoyed getting to be at church together, too.

Yesterday, we took the kids to Lake Georgetown to throw rocks in the water. It was so HOT, though, we didn't stay for much longer than a half hour. It was only 90 degrees while we were there, but the humidity was something like 95%, so it felt like a sauna! We stopped and got frozen custard on the way home, and then filled up the swimming pool in the back yard and let the kids cool off. Spencer had a good time. He is always begging to go bye-bye, but the only place we ever take him bye-bye is the hospital, so it was a treat for him to actually go somewhere fun.

Today, I'm taking him in to the radiation oncology office to get his radiation target marks put back on his abdomen. We are doing it without sedation, so pray that he will be cooperative. Then, at 3:30, we have to be at the Children's Hospital so Spencer can get accessed. I'm glad that we can do it this way instead of having to have home health do it. I hate having Spencer get accessed at home. It's such a traumatic experience for him, and I really don't like having his home be a traumatic place for him.

Tomorrow is Radiation #18, and then we head to the clinic for chemo. Spencer will receive Vincristine and Cytoxan. We have enjoyed the lighter chemo schedule that has gone along with radiation. He is growing soft, white-blond, fuzzy hair on his head, and his eyelashes are coming in again. We think it is really cute. We probably get another three weeks of the hair before we start back into the Actinmycin-D and Topotecan treatments and it will all fall out again. But, for now we are enjoying our little blond boy.

Shauna

Saturday, May 29, 2004 5:19 PM CDT

Spencer's tape somehow came off of his abdomen today (with the marks for radiation). I don't know if they will have to do the scans for placement all over again, or if they have some way of knowing where the marks belong. I guess we'll see when we take him in. Only three more treatments remain! I will be so relieved when this is over.

Shauna

Thursday, May 27, 2004 7:59 AM CDT

Day 16 of radiation. Four more treatments to go. We have been trying to come up with a solution for getting Spencer accessed for the last week of radiation. Monday is Memorial Day, so there will be no treatment on that day. Then, he has three more treatments to complete next week--Tuesday, Wednesday, and Thursday. I (Shauna) have been trying to come up with a way to get him accessed at the clinic, to avoid all the trauma, and I think I've hit upon a good solution. We will skip radiation on Tuesday, and do radiation Wednesday, Thursday, and Friday, and go into the clinic on Tuesday and get accessed there. We still need to clear it with the radiation oncologist, but I don't think there will be a problem.

Today, Annie has a dental appointment, so Spencer is going to go play with his little friend, Taylor. He loves being at their house, and that way, he can avoid the germs of an office waiting room.

Things are going smoothly. We hope it keeps up for a few more days.

Shauna

Tuesday, May 25, 2004 4:55 PM CDT

Day 14 of radiation today. Spencer did SO well. He walked into the hospital with me (Shauna) this morning. I usually carry him in while he whines, "I don't wannit!" Today, he walked right up to the admissions desk, climbed up in the chair and sat there while I signed us in. When we were done, the lady at the desk said, "Bye, Spencer!" Spencer hollered, "BYE!" Then he hopped down and followed me to the elevator, said, "WEEEE" while we rode it to the top floor and then all the way back down to the bottom floor where the radiation clinic is. He went in and was ready to go back to the radiation room. He walked right in, was pleasant with everyone, climbed up on my lap and helped push everything into his tube. I was amazed. He has come a long way in feeling comfortable there. Only 6 more treatments, hopefully! It will be great to have it done and over with.

Yesterday at the clinic, his blood work all looked good. His counts were: White Blood Cells--6.2, Hemoglobin--11.3, and Platelets were 158. Today, Annie had her last day of Joy School (the preschool she has been doing this year). They had a swimming party. Spencer's counts were high enough that I would have let him go swim. But, he's accessed for radiation, so he can't swim with his tubie in, so he went to a little friend's house to play while I took the girls to the graduation party. Everyone had a good time.

I'm tired today. I took Karen and her kids to the airport this morning at 4:00am so they could head back to Idaho. I got back just in time to take Spencer to radiation, and then back in time from that to go to Annie's Joy School party. When we got back from that, Spencer had a therapy appointment with his Early Childhood Intervention Specialist, Duvette. Mike went to the dentist today and had some work done on one of his molars, so it's been a busy day around here. I'm looking forward to bed tonight. We shouldn't have to go back to the clinic until next Wednesday for chemo, assuming that Spencer doesn't come down with anything or have any unusual problems. Hopefully it will be something of a quiet week around here.

Shauna

Sunday, May 23, 2004 9:22 PM CDT

Sorry it has been a while since last writing. We have been so busy the last few days. Thursday, I (Shauna) took Spencer in for blood work. They thought he might need a platelet transfusion, but his platelet count was 107, so we didn't have to do it! On Thursday evening, Mike came down with a bad case of the stomach flu we've all been passing around. He was going to take Spencer to radiation on Friday morning, but I ended up doing it because Mike was throwing up in the night.

At radiation, Dr. Brown said that he had sent in Spencer's information to the protocol office, stating that he was giving him the lowest dose of 36 Gy, and they had written back saying that he needed the higher dose of 41 Gy, which is another week of radiation. Dr. Brown said that he totally disagrees with the decision. He feels that it is just an armchair decision coming down because he had surgery, so they think he should have the higher dose. But, Dr. Brown said that he wrote back to them stating that he and the operating surgeon felt confident that there was no microscopic residual, and that he was going to proceed with the lowest dose. He said that he is waiting to hear back from them, and he said that we may get kicked off of protocol, but he really feels that the lower dose is the best for Spencer. We totally agree and support his decision. As it is, the side effects to Spencer's body should be minimal. If we increase the dose, we increase the likelyhood of growth problems with his pelvis, organ damage, and sterility. Dr. Brown said that radiation is a two edged sword, and that he feels that the risks of increasing the dose outweigh the possible benefit of the higher dose. We agree, and we hope that we get to win this fight. We'll see.

Also, Friday was supposed to be Spencer's final dose of neupogen for the week. We have been giving it to him through his port this week, so we had the iv neupogen. However, Spencer got deaccessed after radiation, and we didn't have the shot kind, so I called home health, and after many hours, they said that they couldn't bring a shot out because they had already provided us with a dose for the day--it was just the iv-ready kind. So, I called and talked to Dr. Sharp's office, and they let him miss his last dose. On Thursday when we went in, his white counts were 5.1, so they said he would be okay without the final shot.

Today, Spencer was scheduled to get accessed by home health. The nurse came and prepped him and accessed him while Spencer sat on my lap. She missed. So, she pulled the needle out and re-sterilized him and had him lay down on the couch. She missed again. At that point, I said that we would make other arrangements and she left. Poor Spencer was so traumatized by the whole thing. The whole time he was crying, "I don't wannit! I don't wannit!" It was awful. The access needle is NOT a small needle, either. He was bleeding pretty good. I called Jennifer, his nurse from the clinic, and told her what happened and asked her what we should do. She said, "Where do you live?" She came over and did it herself. We were SOOOOOO grateful. She is amazing with Spencer. I thought it would be awful to even have her do it after the ordeal he had just been through, but she is so great about having a routine, so Spencer knows what to expect. And she did it quickly and had it done, and he was out playing a few minutes later, happy as can be. We are so thankful for wonderful nurses like Jennifer who make this awful time of our life bearable. She is really wonderful. Spencer totally loves Jennifer, and we do, too.

So, Spencer is accessed and ready to start his last full week of radiation tomorrow. We will go to the clinic afterwards for blood work. This is the week before chemo starts again, so it should be a quiet week as far as blood counts and hospital visits go. (Knock on wood) Thank you, everyone, for your love and support. We appreciate every bit of help and encouragement that we get.

Shauna

Wednesday, May 19, 2004 9:44 AM CDT

Okay, so Mike DID speak too soon. Shortly after he wrote the last journal entry, I (Shauna) came down with a nasty version of the stomach flu we've been passing around. I am just this morning starting to feel like I can keep anything down. So, that makes six sick people in our house within a week. Luckily, it seems to be a 24-36 hour bug, and Spencer seemed to be one of the lightest hit, for which we are truly grateful.

On a happy note--WE ARE HALF-WAY DONE WITH RADIATION AS OF THIS MORNING! And Spencer seems to be settling into the routine of the radiation much better. He has been a lot more cheerful and less stressed about having it done every morning, which is great. Tomorrow we go into the clinic, too, for more blood work. They think that Spencer will need a platelet transfusion.

So, everyone hold your breath that no one else residing in the Jones household comes down with any nasty viruses, for at least a day or two. :0) Thank you for your guestbook entries and for your thoughts and prayers. We really appreciate it.

Shauna

Monday, May 17, 2004 6:43 PM CDT

We've had a rough couple of days and nights, but I think (hope) the stomach virus has made its rounds. Annie was still pretty sick yesterday and last night. Spencer also got sick last night. But they both seem better today. Annie is finally eating again, and Spencer seems extra tired, but has been eating OK in spite of everything (radiation this morning and a transfusion this afternoon).

OK, it looks like I spoke to soon -- Shauna appears to be coming down with the bug now. Hopefully it won't hit her too hard. And hopefully I can dodge it altogether.

Tomorrow I have a meeting with representatives from my new employer (Computer Sciences Corporation, as of June 12) to find out about benefits information. (Sears has contracted with CSC to provide IT infrastructure and operations services.) We already know that our deductible and out-of-pocket maximum costs will NOT be reset to zero when we switch over, which is a very good thing, since we've already exceeded our per family out-of-pocket costs for this year. So tomorrow we'll find out more of the details of our coverage. So far, Shauna and I are very happy with the thought of transitioning to CSC. I think it will be a good change for me and for our family.

We're looking forward to an uneventful, vomit-free night of relative peace tonight.

Sunday, May 16, 2004 12:54 AM CDT

Annie's appointment on Friday went well. Her pediatrician thinks she may have one of a few problems--lactose intolerance (so she's off of dairy for a few weeks), the beginnings of an ulcer (she's on prevacid for a few weeks), or her allergies may be causing her an upset stomach (she's on new allergy medication). Today, she seems to have a stomach virus of some sort on top of it all. She started vomiting early this morning and has continued to vomit every 20 or so minutes up until an hour or two ago. Now, she just complains that she feels like she's going to throw up. Sophie and Karen both threw up once a few days ago, but didn't do anything as severe as Anne is doing. And this coming week is Spencer's low counts week, so pray that he doesn't get it.

Spencer's home health care nurse is coming to our house today to access Spencer for the week. I will be so glad when radiation is over. We are all tired and irritable. We are on our last day of neupogen for the week, though, which is happy news.

Shauna

Thursday, May 13, 2004 6:32 PM CDT

It was a big day for Annie. She got her splint off and pins out of her arm and now only has two bandaids where the pins used to be. She went to the appointment very excited to pull the pins out herself, but once the bandages were off and she saw the pins sticking out of her arm, she decided she didn't want ANYONE pulling the pins out of her arm. She tried to be brave, but it was a very scary thing for a four year old, and it hurt her quite a bit, and there was a good showing of blood, too. The surgeon almost sent her to the OR to have it done, but between me holding her and him doing the actual removal, we got it done. She was very glad to have it over with, and I took her to get an icecream cone afterwards, which made life good again. She still hasn't straightened the arm all of the way, but she is bending it more and more. We have another appointment in 2 months for more x-rays and to make sure that everything is still healing well.

Mike took Spencer for Day 6 of radiation today. We are excited for tomorrow and getting to have a weekend of no tubies! Spencer has been begging for a bath all week and can't have one while accessed, so first thing tomorrow morning, the kid gets to climb in the tub. It's the first day that Annie can have a real bath, too, for that matter, without having to worry about getting her arm wet. It will be a red letter day at the Joneses when the kids can bathe again! :0)

I'm taking Annie into the doctor tomorrow morning. She has complained of a stomachache off and on consistently for almost a year now. It started last summer, and the pediatrician thought it might just be some constipation, because it was hot and she was playing outside a lot. We've also wondered if it's stress related, because she gets very anxious about change. But, it still continues and Mike and I are paranoid now, so I'm taking her in to get it checked tomorrow after radiation.

We are feeling tired and weary again. It's hard to think about getting through the rest of radiation, let alone the rest of chemo. And we just read a caringbridge site where a little boy with the same kind of cancer that Spencer has just relapsed for the second time in 3 years. We just have to really focus on taking each day as they come, because that's all we can handle sometimes.

Please continue to sign the guestbook when you visit. Your entries really keep us going. Thank you for all of your help and prayers. We appreciate everyone who has helped us out through this difficult time.

Shauna

Wednesday, May 12, 2004 7:07 PM CDT

We recently opened a special savings account for Spencer. The original purpose was to have a place to save his monthly donation from the Cancer Fund of America, but we have also had people express a desire to donate money to help with travel expenses for our mothers when they come out to help us during chemo treatments and hospital stays. We were hesitant to post it here on Spencer's site. We don't want people to feel like we are soliciting money from anyone, but wanted to provide a way for those who wished to give money to do so. So, for those who want it, the information to make a donation is here.

Mike took Spencer to radiation this morning. It went smoothly again, and Spencer came home in a pretty good mood. We are having quite the party here at the Jones house. Karen's kids bring the total to 5 children under 5 years old. We have two 2-year-olds and two babies. Spencer and his cousin Savannah enjoy playing together for limited periods at a time, then the two year old in them comes out and they need a break from each other for a while. And Annie thinks that Savannah is her own little apprentice--she likes to mentor her on how to do things like play dress ups and dance through the living room. It's really nice to have the chance for our children to get to know some of their cousins a little better, and we are enjoying the visit.

Spencer's white counts were 1.8 on Monday, so we started neupogen yesterday, and will continue the rest of the week. We are a little concerned that he STARTED chemo with such low white counts, so we will have to be really careful this whole cycle, and hopefully the neupogen will bring his counts up some.

On a little side note, we failed to mention that last Tuesday, Mike broke his little finger on his right hand playing basketball. He thought he jammed it, and then on Wednesday morning when he couldn't bear to have it touch anything and it was swollen and bruised, I made him go into the doctor. They x-rayed it and said it was fractured, so he has a splint on his finger. Annie thinks it's pretty cool that she and Daddy BOTH have broken bones at the same time, and she is trying to teach him how to take care of your broken bone. (Since she had hers first:0) ) So, we're hoping that we've all had our medical crises for the year, but I'd better go knock on some wood before that changes.

Shauna

Tuesday, May 11, 2004 6:10 PM CDT

Yesterday was chemo. Spencer and I (Shauna) spent 7 hours in the clinic. We got there at 8:30, and actually were done with the cytoxan by 12:15, but home health didn't show up with our home infusion stuff until almost 3:00, so he got his 4 hour mesna at the clinic and we just did the 8 hour mesna at home. He was really very well behaved at the clinic, but by the end of the day without a nap, he had HAD it and was cranky, cranky all evening, and all day today, for that matter. That, and he was on decadron (steroid) for nausea and attached to the iv bag, which is always really frustrating for everyone. So, really, we can't blame him too much for his bad mood.

My sister Karen and her two children flew in last night. We got home from the airport around midnight, and then I was up again at 5:30 this morning to take Spencer to radiation. Luckily for me, Karen let me take a nap this afternoon, so I'm feeling a little more rested.

Spencer is off of fluids today and besides being a little temperamental, he's doing really well. 4 radiation treatments down, 16 to go.

Shauna

Friday, May 7, 2004 11:58 AM CDT

Day 3 of radiation. Things went really quickly this morning. Spencer and I (Shauna) were out of the hospital by 7:15. And much to our surprise, Mike met us in the parking lot. He brought us breakfast for an early Mother's Day surprise for me. It was so nice to see him and visit and have breakfast. We feel like we don't see each other very much these days when we can just relax and talk, so this morning was a wonderful surprise.

Spencer had a visit from his Speech Therapist and Early Childhood Intervention Specialist this morning. Then, at 3:15 I took Annie and Spencer to the clinic to get him accessed. Dr. Sharp saw us and asked if we were getting blood work done--I told him that we were getting accessed for the coming week, becuase radiation said they couldn't postpone it on Mondays. Dr. Sharp said, "Yes, they can. I'll call Dr. Brown," which he did immediately. When he was done, he said, "Dr. Brown is working on it. It's because of the anesthesiologists' schedule that they do it early, but they have been known to work with us. If they can't adjust it at all, we will regroup and come up with a different solution. I don't think that having him accessed 7 days a week is a reasonable solution." It's nice to have a doctor who is such an advocate for Spencer. We really love Dr. Sharp. So, instead of leaving Spencer accessed, he told us to cancel radiation on Monday, since Spencer is getting his chemo treatment then, anyway, and we will start going again on Tuesday. In the meantime, they will work out a solution for accessing. So, Spencer is tubie free for the weekend. YEA!

We are SOOOOO glad that it's Friday and we can get a little respite from the week. Chemo is only Vincristine and Cytoxan on Monday--we get to skip the Actinmycin-D and Topotecan during radiation, which is great. Spencer is getting some hair back already--little white fuzz all over his head. It's very cute, but we're trying to not get too attached to it, since it will be short lived. It's fun for now, though.

Spencer is handling radiation really well so far and it has been a relatively painless ordeal for all of us, except for the early hour. As long as he doesn't have to be accessed there, I think we will be fine.

Shauna

Wednesday, May 5, 2004 9:25 AM CDT

Yesterday's CT Scan went smoothly. I (Shauna) took Spencer to have it done, and he did really well with the whole thing. The only glitch was that they got his name wrong when they were calling for me to come to him in the recovery room. The nurse came out three times calling for "John" and "John's family." Finally, she came out and said, "John Spencer's family?" I said, "You mean Spencer JONES?" She went back and checked, came back and said, "Yes, Spencer Jones." By the time I got in to him, he was sitting up on the bed WAILING, and wouldn't let anyone touch him. I was more than a little annoyed about the whole thing, but he settled down quickly and watched a little "Land Before Time" while we waited an hour for them to figure out the new hospital computer system so that we could be discharged.

Today, we had to get to Shiver's Cancer Center by 5:45am for radiation, so Mike and I are tired. This was a MUCH better experience than last time, though, because Spencer was already accessed. They gave him his anesthesia while he sat on my lap. He fell asleep and they put him on the table while we left. We were there when he woke up, and he woke up pretty well. He's a little wobbly still from the anesthesia, but he refuses to sit still and lay low. He's up running around, fighting with Annie like usual, so I guess it's good that things are so normal.

We were told, however, that we can't have a late Monday treatment, so we are probably going to end up accessing Spencer in the clinic Friday afternoon and deaccessing him after radiation the following Friday morning. That's the plan for this week, at least.

Shauna

Monday, May 3, 2004 7:58 PM CDT

Spencer and I (Shauna) spent 6 1/2 hours in the clinic today getting a red blood cell transfusion. It went smoothly, and Spencer had a good time of it. He was really freaked out when it came time to be accessed--it was the first time since his nightmare at the radiation clinic. The nurse was great, though, and brought in toys for him to play with and did a wonderful job. I've never been so grateful for an accessing before. It was over before Spencer knew it. As she was checking for blood return, she said, "I don't know how they could have missed!" After that, Spencer had a ball, playing with dinosaurs and cars and watching movies and talking to the other kids in the clinic. He was mad when we left. Go figure.

Tomorrow is the CT scan, and then radiation starts on Wednesday.

Shauna

Sunday, May 2, 2004 9:40 AM CDT

We've had a busy past few days. On Friday, I (Shauna) took Spencer to the clinic for blood work. His counts were okay, so we didn't have to have a transfusion! YEA! We go back in on Monday for more blood work and a probable red blood cell transfusion. I talked with both Spencer's nurse and Dr. Sharp about our accessing trauma on Thursday, and they were both as mad as I was. Dr. Sharp said that he doesn't like them to do it, anyway, because they have less experience doing it so the risk of infection goes up, especially when they leave the line in all week. So, he is having Spencer's nurse, Jennifer, call the radiation clinic to tell them that Spencer will be there late on Mondays--he will go to the clinic at 8:30 as they open and get accessed, and then we will go over to radiation. The rest of the week, the 6:30am appointment for radiation will stand. I was really glad that they were so proactive about the whole thing. It makes me like them even more. Spencer was really cute the whole time we were there. He was being a real charmer with everyone. He played dinosaurs with Mary, the child life specialist, and he gave Nurse Jennifer a really nice hug for the first time that made her cry. He was chatting with everyone. His level of comfort there is getting to be close to his comfort level at home, which is great.

Friday night was awesome! We took the kids to the Relay for Life at Dell Diamond. It's a fund raising event for the American Cancer Society. There are teams that get sponsors and then they relay around the track all through the night. You could purchase luminaries to decorate with the name of a cancer survivor, or someone who has lost their fight against cancer. We went just for a short time, because we knew Annie, Spencer, and Sophie wouldn't last long. But, we got there just in time for Spencer to do the Survivor's lap. There were over 300 cancer survivors there, and they came out in purple t-shirts with purple balloons and walked around the track to songs like, "I'm a Survivor," and "I will Survive." It was really an emotional moment for me as a mother to see Mike carrying my little boy among the sea of others who were fighting this awful disease. Then, they had the survivors release their balloons by the time period that they had been a survivor. The last woman to release her balloon had been a cancer survivor for 57 years. It was an amazing thing! Then, Annie, Sophie, my mom, and I walked with others on the "Lap of Love," which was for all the caregivers of those with cancer. We walked with our friends, the Faherty's who have a son that also is battling rhabdomyosarcoma. It was neat. On the way to Dell Diamond, we had talked to Annie about the purpose of the night, and tried to explain what a "Cancer Survivor" is. We told her it was someone who had cancer, someone who was fighting their cancer and who was winning. So, when we saw Spencer down walking on the track with others, Annie shouted, "My brother won!" And that night in her prayers, she said, "Thankful that we could go to Spencer's party tonight. Thankful that Spencer won. Thankful that he's beating cancer." And to that we say, "AMEN!!!"

Yesterday, my mom went home and Mike's mom arrived. So, the sadness of Grandma Sorensen leaving was offset nicely by the excitement of the arrival of Grandma Jones. We are so grateful for all of the help that we are receiving. Next Monday, we have the clinic visit with the possible blood transfusion. Tuesday, we have to be at the Children's Hospital at 7:30am for a CT scan for radiation planning. And then Wednesday morning at 6:30am we start radiation treatment. So, we are trying to enjoy the relative peace of the Sabbath day. It has truly become a day of rest for our family--the calm before the storm of the week begins again.

Shauna

Thursday, April 29, 2004 8:55 PM CDT

This morning was Spencer's radiation simulation visit at Seton Northwest. We had to get there by 6:00am. Everything went smoothly except for accessing Spencer. The radiation technician, and some anesthesia guys were the ones that did it, and I somehow got the feeling that they hadn't had a lot of experience with accessing, or maybe just accessing a child, I don't know. But it was AWFUL! They could not get the needle in his port to save their lives! I think it was the radiation technician that was trying to access him. And he totally missed the port repeatedly, and was digging around with the needle inside of Spencer's skin. Meanwhile, the anesthesiologist was explaining to me that it didn't HURT Spencer, it was just unfamiliar to him, so that's why he was screaming his head off. I was so mad. They finally had to gas him to make him go to sleep, then they had us leave the room while they accessed him, so I don't know how many more tries it took to get it right, but then the anesthesiologist came out and was telling me that some children are just really hard to access because of the way they react to having it done, and that in the future, I shouldn't hold him while they did it, he should lie flat on the table to do it, which I know will be TOTALLY traumatic for Spence. He asked if he had been accessed before and how long ago it had been since he had been accessed. I told him that it was on MONDAY, and that he is accessed every week at least once, and he ALWAYS sits on my lap and we had NEVER had an experience like this morning's. He said that in the future it would just be best to have him lie flat for accessing. I was FUMING. I still am. I told Mike that I would rather access him myself than have him go through that again. I KNOW I could do a better job than they did this morning. It was awful. But, the rest of the morning went smoothly. They got the mold of Spencer's body so that he can be held still during radiation. And they get to do the lowest dose (36 Gy) of radiation, so he shouldn't have any immediate side effects from the radiation. They marked his abdomen with a bull's eye and two x's so that they have a target to radiate, and then covered the marks with tape so that they don't come off during the next month. Spencer did well with the sedation. He didn't need a breathing tube with his anesthesia, and he came out of sedation pretty quickly and cheerfully.

Tomorrow we go into the clinic for blood work and a possible transfusion. I'm going to talk to them about our options for accessing Spencer for the next month of radiation. I wish there was a way we could get him accessed at the Children's Hospital and then take him over to radiation, but I don't know if it's going to be possible. I just know I do NOT want him to have to go through this morning's trauma every Monday for the next month. It was just totally unacceptable to me.

I have to go get Annie in bed. More hospital time in the morning, so I'd better get to bed, too.

Shauna

Wednesday, April 28, 2004 11:46 AM CDT

Mike and I met with the radiation oncologist this morning. His name is Dr. Brown and we like him a lot. He's very nice and has a 2 year old of his own, so he knows what it's like to have a toddler. He explained radiation to us, the side effects, the process, etc. He was great. He let us stay out in the waiting room where Spencer was watching Zaboomafoo and talked to us there. We go in at 6:00am tomorrow morning. They will make a mold of his body and do x-rays and set everything up to start radiation on Monday (6:30am will be his regular radiation appointment time). Then, we will go to Children's Hospital for a CT scan in the afternoon. Dr. Brown is going to check with Dr. Smith, Spencer's surgeon, to see how confident he is that he got all of the cancer out in surgery. If he's confident, Spencer's dose will be lower (36 Gy instead of 41Gy), and we will have only 4 weeks of radiation instead of 5. And because of the lower dose, he shouldn't have problems with his skin burning and such. We are thinking it will be the lower dose, but we will find out for sure tomorrow morning. Overall, it went smoothly and we are feeling better about what is to come.

Now, I have to go take Annie for a check-up with her surgeon on her arm. Wish us luck!

Shauna

Monday, April 26, 2004 5:10 PM CDT

I (Shauna) took Spencer in to the clinic this morning. His blood counts are good still, so we are going to a park this evening for Family Home Evening. He was really cute at the clinic today. He could hardly wait for me to sign in before he was headed back to the play room. Then, he only had minimal fussing during weigh in, temperature, and blood pressure check, after which he walked straight into one of the patient rooms, because Dr. Sharp was in there. However, Dr. Sharp was in there with another patient, so I tried to get Spencer to leave, but he was busy showing Dr. Sharp his dinosaur, and Dr. Sharp said he could stay and visit as long as he wanted to. So, we hung out with Dr. Sharp and Ricardo, whom we'd never met before, until I finally talked Spencer into going to look for more dinosaurs. He was just really content to be there today, which was fun to see. He played air hockey with Mary, one of the Child Life Specialists, until he had received his neupogen and it was time to go, then he threw a royal tantrum because he didn't want to leave. So, I went and checked out and came back, and he STILL didn't want to leave. I let him play for a few more minutes with Mary, and finally was able to lure him away with the promise of chicken nuggets and a frosty.

He seems to be over most of his pain and discomfort from surgery now, which is wonderful. He is back to regular bowel activity and we haven't seen any more blood in his urine. He really amazes us with his resilience and energy. We met a darling little girl named Alexandria who is about 6 months older than Spencer who has Acute Lymphoblastic Leukemia. She was scheduled to finish up treatment in November, about the same time as Spencer. She just relapsed, though, and they are leaving in June to go to Dallas/Ft. Worth for 3 months for a bone marrow transplant. They have other children who will stay home with relatives. Her mom and I talked about how you gear yourself up to get through a certain length of treatment and brace yourself for certain odds of survival, but that can change in an instant, and you have to readjust your treatment finish line and your thinking. The mom said that her daughter has only a 40-50% chance of survival now and that her treatment will be much longer. Please include Alexandria and her family in your prayers.

It is such a nightmare--cancer. I slept really soundly, really well for the first time in months a few nights ago, and I woke up thinking for a fleeting moment that it was all a bad dream. Our life is so different from just a few months ago. I look at pictures of Spencer at Christmas time with hair and think how strange he looks to me. And yet, today on the way to the clinic, I kept looking at him in the rear view mirror and almost didn't recognize the pale little boy that was looking back at me. His eyelashes are gone. Well, he has one long eyelash left. I miss his long, thick eyelashes more than his hair, I think. He's thinner and doesn't look like a baby anymore. He's been through more in his 2 years of life than many adults. And he's so tough through it all.

Well, we are going to go have dinner and then head to the park. We appreciate everyone's thoughts and prayers on our behalf. Thank you so much for caring about us and checking in on Spencer.

Shauna

Saturday, April 24, 2004 8:19 PM CDT

We have had two really good days, yesterday and today. Yesterday, the kids, Grandma Sorensen, and I (Shauna) went with our friends to a really fun park and had a picnic. Spencer and Annie had a ball playing on the toys and running around. Then, we went to visit the capitol building. Annie is fascinated by it and thinks it's beautiful, and it's very near the hospital, so we can see it every time we take Spencer in. She has been saying that she wants to go inside since she first saw it, so we went. The kids loved it, and they have an amazing rose garden outside that Annie absolutely adored. She was very sad that we wouldn't let her pick a rose to take home, and everyone was very tired by the time we got home, but we had a great day.

Today, I got up early and played racquetball with my friend, Joy, and then Mike played this afternoon with her husband, Steve. Then, Mike, Annie, and I went bowling with Joy and Steve and their kids. Annie loves bowling, so she was very excited. Then we went to a Japanese Steak House for dinner. We got to watch the cook make our dinner, and Annie was thrilled with it all. Spencer and Sophie meanwhile took naps at home with Grandma.

We started giving Spencer neupogen yesterday. I hate giving him shots. It's such a traumatic thing for everyone. Spencer sees the neupogen shot and starts screaming. And I have to hold him down to give it to him. It's awful, but it's a necessary evil, so we continue to do it.

It's been nice to have a few days of fun before his counts really drop and we are stuck at home. Spencer is doing a lot better with his recovery. He still says, "OW" occasionally, but the ows are getting fewer and farther between, for which we are grateful.

Well, we're worn out here, so I think we'll turn in.

Shauna

Thursday, April 22, 2004 5:59 PM CDT

So, in true "Keepin' up with the Joneses" style, we have yet another small crisis to report. No broken bones, mind you, just minor mayhem and hysteria. Last night, around 2:00am, I (Shauna) got up to get Spencer's mesna out of the fridge so that it could come to room temperature for his 4:00am dose. I walked out of my bedroom just as Mike was walking out of Spencer's. Spencer's pump said that there was an occlusion and was beeping. We looked up and down the line for a clamped clamp, a twist, anything that could be causing the block. Nothing. So, we switched out the pump and pump tubing, and as soon as we turned it on, we got the same message. Mike kept trying to find the block, and I called our home health service. The on-call nurse called us back and had us run a series of tests, trying to find where the block was. We removed all of the tubing that was not connected to Spencer's body, and we couldn't get the saline to flush. So, around 3:00, she came out to our house and tried it herself to no avail. So, she decided to re-access him. The poor kid was trying to sleep through the whole thing, and was really traumatized by the removal of the tape. She found that he was deaccessed. Somehow in his sleep, he had pulled the needle out of his body, but it was still under the tape and gauze, so we couldn't tell. She had to reaccess him without numbing cream, because it takes an hour for the emla cream to work, and we needed to give him his mesna to coat and protect his bladder. I felt awful making him go through it, in the middle of the night in his own bed. I just thought, "There is no safe place for this child." So, he got accessed and the nurse left around 3:00am, and then I tried to sleep for 30 minutes before getting up and giving him his mesna dose, which runs over 30 minutes and has to be monitored. Then, we had to be out of the house shortly after 8:00 this morning, so we drug ourselves out of bed and back to the hospital. Needless to say, none of us got a very good night's sleep.

At 9:00, Spencer had an appointment with Dr. Smith, his surgeon. He said that everything looks really good and that he can bathe again (YEA!). Then, we headed up to the clinic and got another dose of mesna and blood and urine analysis done. We got home in time for me to turn around and take Annie to her surgeon for a check on her arm at 2:30. They did x-rays and changed the bandages and re-splinted it. Dr. Flood said that it looks good and that we need to come back in one week, and then again in two more weeks, and then she should be able to get the splint off.

We got home not long ago, and we are taking a deep, cleansing breath. The oncologist's office called and said that Spencer's urine and blood looked good, so we don't have to go in tomorrow morning--we get to just deaccess him from home. Which, as we learned last night, is not as hard as one would think. :0) Spencer will go back for labs on Monday, and on Wednesday we will meet with Dr. Brown, his radiation oncologist, for a consultation and information on what his radiation therapy will entail. We are both really nervous about radiation and look forward to meeting Dr. Brown and discussing some of our concerns.

Oh, and Annie, Grandma and Sophie got to go to a farm this morning with Annie's Joy School group while I was at the hospital with Spencer. They had a FABULOUS time and Grandma and Annie have been talking about it all day. When we got to Annie's doctor's appointment, she was telling the receptionist all about the baby goats and pony she saw and how she was going to be a farmer when she grew up. It was pretty cute. She is such a talker. She talked to the doctor the whole time, asking him what he was doing every time he did anything and asking what everything was. He was really great about answering all of her questions. He asked her if she wanted to be a doctor when she grew up. She said, "No. I don't want to be a doctor. I want to be a farmer."

Well, I've written a novel. We are doing well. We are all tired--physically, mentally, and emotionally, but we are hanging in there. And we are trying to enjoy the journey as much as we can. We hope you are all doing the same.

Shauna

Wednesday, April 21, 2004 8:49 PM CDT

I took Spencer to get his chemo today (this is Mike). It went pretty well, but it makes for a long day. He had a little bit of blood in his urine this morning, but Dr Sharp said that it's not unexpected given his surgery last week. Still, he's going to get an extra dose of Mesna (medication that coats and protects his bladder from the chemo) tonight.

He is still in some discomfort from the surgery last week, but is doing pretty well in spite of it. He crashed at 7:30 tonight -- I think the long day at the clinic wore him out, too. He'll be hooked up to his portable IV pump through to Friday so that he'll have plenty of fluids to flush out the chemo.

While I was at the clinic I met a little girl who was born with Brittle Bone Disease. She is six now (though she was not even as tall as Spencer) and has had over 50 bone fractures in her lifetime. When she was born, she had 16 different fractures already (and it was C-section). Her left upper arm is deformed because it was poorly treated after it broke once. I talked to her mom for a bit and realized that you don't have to look very far to find reasons to be grateful, especially at that place.

New pictures up today.

Monday, April 19, 2004 9:05 PM CDT

Our first full day at home. Spencer is still hurting, but I think it's getting to be less and less, so we're making strides. I (Shauna) spent the entire day on the phone with doctor bill messes. It's been really frustrating. Just one of the many messes involves a bill that we paid last month and then received the same bill this month. When I called the billing office, they said that we didn't pay, but our payment has gone through and shows it being to them. So, I had to fax copies of proof of payment and am waiting for them to figure it out. I'm almost on top of all of Spencer and Sophie's hospital bills, just in time for Annie's to start pouring in. It's been overwhelming trying to keep track of everything.

We're not looking forward to chemo this week, but I guess since we don't have any choice, we should just grin and bear it.

Spencer needs some loves, so I'd better go.

Shauna

Monday, April 19, 2004 9:19 AM CDT

Spencer came home yesterday! He is so happy to be home. They took his catheter out Saturday night, because he was leaking urine around it, but none was coming through the catheter. He was hurting, because of the pressure. Once the catheter was removed, they found a big blood clot in the catheter line that was blocking the urine. He was happy to have it out, but then he was in pain again because the removal of the catheter causes painful burning with urination for a day or two after removal. On top of it all, the Tylenol with codeine causes constipation, as does an epidural, as does abdominal surgery, all of which Spencer had. The poor kid struggled most of the day on Saturday with trying to have a bowel movement. It was awful. He was screaming and trembling and wouldn't let anyone touch or talk or look at him. The nurse gave him a glycerin suppository around 3:00 Saturday afternoon, which did nothing. So, around 8:00, they gave him a dulcalax (sp?) suppository which finally helped him have a bowel movement around 9:30 Saturday night. He has been struggling again with constipation since then, as well as the painful urination, so the poor kid was pretty miserable.

He cheered right up when we headed out to the car to come home, though. He fell asleep on the way home and then has wanted to play outside from the time we stepped foot at home. He had another rough night again last night. His digestive tract is still pretty messed up, but he hasn't seemed to be in any pain from the incision any more, and has been off of the codeine for almost 2 days now.

I called the oncologist's office this morning and scheduled his VAC treatment for Wednesday morning at 9:30. I don't know if this will be an in-hospital stay, or if we can work it out between home and the hospital again. I hope we don't have to stay in the hospital. That will be a little more than Spencer wants to take right now, I know.

It's good to be home. It's good to have Spencer home. Last night, Annie asked the blessing on the food. Her entire prayer was, "Thankful that they could get Spencer's cancer out. Thankful that Spencer could come home." That about sums it up here.

Shauna

Friday, April 16, 2004 8:11 PM CDT

Well, this entry will seem really boring next to yesterday's, but we consider that a good thing around here! :0) Annie is doing really well and hasn't even needed pain medication today. Spencer has been taken off of the epidural, so he is in a lot more pain than he has been, which is hard. He really wanted to go for a walk, so Mike and I tried to lift him to the wheelchair, and he was in too much pain to do it. As I typed that last sentence, my friend called from the hospital. She's staying with Spencer tonight so that Mike and I can catch up on some much needed sleep. She said that once Spencer's pain medication kicked in, they were able to get him into the little hospital wagon, and they are on a walk together--Spencer is loving it and really happy to be out and about. He is an amazing boy. I just know that I would not be as tough as he is were I in his shoes. He still has the catheter in, which is causing him quite a bit of discomfort, but the good news is that he should get it out and be able to come home either tomorrow or Sunday. It will be great to have him home again.

Mike is coming down with something. He's achy and feverish, so we are trying to keep him away from Spencer for now. Hopefully a good night's sleep will help him a lot in that area. We appreciate everyone's help. We had another good friend spend the night with Spencer last night, and we have had meals every night this week. And that just scratches the surface. I'm afraid to even start naming the kind deeds that we are receiving daily, because there's no way I could make a comprehensive list--it's just overwhelming. We love and appreciate everyone's thoughts and prayers. Thank you so much for supporting and helping to carry us through these rough times. We certainly are not doing this alone. Thanks!

Shauna

Thursday, April 15, 2004 11:34 AM CDT

It has been a whirlwind of a last 30 hours for us. Yesterday morning, we got up at 5:30 to get Spencer to the hospital in time for preparations and registration for his surgery. His surgery started around 9:15 and finished around noon. It was a complete success! The surgeon said that it was the ideal location--attached to his bladder, and everything went smoothly. He took a piece of Spencer's bladder, with a urologist there to assist, and there were negative margins all the way around. He has a Foley catheter while his bladder heals, but he should return to normal bladder function within a few days. He also took some surrounding lymph nodes which were clear of cancer, too. We are incredibly relieved and overjoyed at how smoothly everything went. Dr. Smith sent four frozen samples of the tumor to pathology to be evaluated. Spencer came out of the anesthesia quite well. His face is puffy and he has an epidural for pain, which seems to be working quite effectively. He is a tough little guy and we are proud of how well he did. We stayed with him until around 7:00 last night, when Grandma Sorensen came and relieved us for the night. She said that he stayed up watching movies until almost midnight, and then slept soundly through the night, waking up at 10:00 this morning. So, we are really, really pleased with everything there. He has had some pain, but he has an amazingly high tolerance for pain, so he is hanging in there beautifully.

We stopped and got some celebratory cake and icecream on the way home from the hospital and shared it with our neighbors and some friends from church who were at our house sanitizing for Spencer's return home. At around 10:00 pm, we were getting ready for bed. Annie was running through the living room kicking a big purple bouncy ball (about beach ball size), when she got caught on the ball and rolled over the top of it, catching herself with her arms, and then rolling to the ground in pain. Mike and I ended up taking her to the ER at Seton Northwest, and Grandpa Sorensen stayed home with Sophie. At the ER, they did x-rays and discovered she had broken her arm--fractured all the way through the bone right above the right elbow. The poor girl was in so much pain. The whole way to the ER she was hysterical, because she didn't want to go to the hospital. I think it was partly because she had just been to see Spencer at the hospital, and she knew he was in pain and she was afraid. Plus, she's just seen him get poked and treated everytime we go to the hospital, and it terrifies her. She kept trying to tell us her arm didn't hurt anymore. She said, "I promise I'll stop fussing and crying, just please don't take me to the hospital!" We felt terrible for her and tried to explain that it wasn't punishment and we weren't mad at her for getting hurt. She was just beside herself in terror and pain, and we didn't get any pain medication for several hours. The nurse told us that she had a hard time getting pain medication, for one, because with pediatric patients who have limited communication skills, it's a good way to assess pain. It was so frustrating and exhausting for all of us. She finally fell asleep around 2:00am, and the orthopedic surgeon came and told us that this was one of the rare cases where he would get up in the middle of the night. She was losing her pulse in her right hand, and he said he needed to operate right away. As they were reviewing the anesthesia risks with us, I almost started laughing because we had just gone through it that morning with Spencer. It was really surreal. The surgery went smoothly, and the surgeon put two pins in her bone and splinted and slinged her arm. Her blood flow returned to normal. She woke up from anesthesia around 5:00 am--almost 24 hours from the time we had gotten up to take Spencer to surgery. She did really well and we got to take her home. She has to go back in a week, and they will remove the pins from her arm in a week or two, depending on how her arm is healing.

Anyone who knows Annie knows that she has a passion for flowers. We kept her calm in the ER by promising her roses when she was done. She held us to that promise at 5:00 am--she refused to go home until she had her promised flowers in hand. The nurses said that as she was being given her anesthesia, she was telling them about all of the flowers she was going to get when she woke up--roses and tulips. They thought she was darling.

So, we finally fell into bed about 6:00 this morning and slept for a few hours before we started the day again. Annie and Spencer are both doing quite well this morning, so we are thankful for that. Spencer's cancer has helped us put things into better perspective, I think. We were stressing out last night, because Annie's break may have damaged her growth plate in her right arm, so the surgeon was telling us all of the awful things that could happen with it not growing right or straight, etc. etc. But, as I was starting to freak out, I thought, "At least it's not life threatening. She will live through it, and that's what really counts." We talked about that very thing yesterday during Spencer's surgery with another couple whose daughter has cancer. It's easier to put things in perspective and to be grateful for today, when you aren't sure how many tomorrows you may have. We are all blessed with that gift of the present, and we all need to make the most of that gift and treasure it for the blessing that it is.

Thank you, everyone, for your thoughts and prayers. We really appreciate the love and support that we still feel on a daily basis. We know that the Lord hears our prayers, and that he heard all of your prayers with ours for Spencer yesterday. We are truly blessed.

Shauna

Monday, April 12, 2004 6:31 PM CDT

Spencer's surgery is scheduled for Wednesday (4/14). Dr. Smith said that it looks to him like the tumor may have originated from the bladder. I (Mike) got to see the before and after scans today for the first time. It was pretty amazing -- the initial scans of his pelvis area show the tumor completely filling that area of his body. The scans from last week show the tumor to be greatly reduced in size. I will scan in some of the CT scan slides and post them sometime soon.

Spencer will probably have to spend 3-5 days at the hospital recovering from surgery. We're going to try to go do something fun with the kids tomorrow. Annie seems to be having a hard time with things right now--she is very clingy and prone to crying over the littlest things. Spencer is doing pretty well -- his counts are up and he's managed to avoid the head cold that Shauna and Sophie came down with a couple of weeks ago. I think it will be good for all of us to go play and have fun before surgery on Wednesday.

Sunday, April 11, 2004 7:37 PM CDT

We had a great time camping. We ended up going to the campground Friday night and then going home to sleep and going back up Saturday morning for the Ward Easter Egg Hunt. It was a good thing, too, because Annie ate something that disagreed with her stomach Friday night and threw up in the night. She was fine Saturday morning, but we were happy that we were not in a tent with three kids when it happened at 1:00am. Spencer had a really good time camping, throwing rocks in the lake and walking up and down the campsites. It was really cute. We were really glad that he got to go have a little time outside having fun before he's cooped up again in the hospital.

Grandma and Grandpa Sorensen came last night from Idaho. It's nice to have them here, and the kids are already getting lots of spoiling. We've had a good Easter. Mike and Annie both sang in church, and Spencer and Sophie stayed home with Grandma and Grandpa and took naps.

We are a little aprehensive about the week to come, but anxious to dive in and get it over with at the same time. Please keep Spencer in your prayers. We are really praying that Dr. Smith will be able to get the entire tumor out with this surgery.

Shauna

Friday, April 9, 2004 3:19 PM CDT

We haven't heard from the surgeon yet. All of this waiting is driving me (Shauna) crazy. He was supposed to call yesterday and didn't. So, today around noon Mike called and the receptionist said that Dr. Smith is in surgery all day today. So, it looks like we won't have any new information until Monday at the earliest. I'm anxious to get started on the surgery and radiation so that we can just get it all over with, but it looks like we just have to be patient over the weekend at least.

Speaking of this weekend, our ward (Church group) is having a campout in Georgetown this weekend and since Spencer's counts are decent, we are going. I think Mike will take Annie and Spence up tonight and then Sophie and I will join them all in the morning for the ward breakfast and Easter egg hunt. It should be lots of fun--I know Spencer will be glad to be out of the house. He's been pretty cooped up since chemo started, so it will be great for him to get to spend some time outside. And Annie is SOOOOOOOOO excited to go camping. At first light today, she was up poking me, saying, "Mom, it's day! Let's go camping! Come on! Get up! We have to go camping!"

I gave Spencer a hair cut today. Now, before you all start laughing, he DOES have SOME hair, and the few strands that he had were getting long and wispy, so I buzzed him with the clippers. He hates haircuts and I felt bad having to do it for 10 hair strands, but the wispies were getting wispier, and I decided it was time for them to go. He looks very handsome with his new haircut :0)

My parents are coming into town tomorrow night. We are excited to have Grandma and Grandpa come to play. The kids are looking forward to the spoiling, and Mike and I are looking forward to a DATE!

Shauna

Thursday, April 8, 2004 4:47 PM CDT

Shauna went in to go over the scan results with Dr. Sharp this morning. The tumor is still there and is still quite large -- larger than we would have hoped. But the good news is that it has shrunk considerably and it hasn't spread anywhere else.

When Spencer was diagnosed in January, the tumor measured 11cm X 9cm X 6cm. It is now down to 6cm X 4.5cm X 4.8cm. Like I said, still pretty big. Dr. Smith (the surgeon) is reviewing the scans and is supposed to call us to set up an appointment to talk to him about the surgery. Probably we'll talk with Dr. Smith on Monday (?) and schedule the surgery for later next week.

Dr. Sharp said that it looked to him like the tumor could be removed cleanly with surgery, but that it was hard to tell with just the pictures. Dr. Smith may be able to tell us more when we talk to him.

We're a little bit disappointed that the tumor isn't smaller, but still grateful for the overall positive results of his first evaluation.

More good news for us regarding my employment: I will be transitioning to Computer Sciences Corporation (CSC) in May/June timeframe. Sears has been in negotiations with CSC (and several other vendors) with regards to a an IT outsourcing initiative for the last 6 or so months. Up until today I have known that CSC would be taking over many of the IT operations and engineering functions that are currently handled in-house. What I DIDN'T know was whether or not I would be transitioning to CSC or staying with Sears (or be let go?), and whether I'd be able to stay in Austin or be asked to relocate. So today it was announced that I, along with most of the rest of the Sears IT people whose jobs were in question, would be picked up by CSC but would be able to continue working at our current Sears facilities. To sum up, I will still have a job at Sears as a CSC employee doing pretty much the same thing as I do now, and all of that is exactly what we were hoping would happen.

That's all for now. We'll post the information about Spencer's upcoming surgery as soon as we get it.

Wednesday, April 7, 2004 5:09 PM CDT

Still no news. We are really frustrated. We called three times today and left a message, but no one has called us back. So, now we have to wait another day to find out anything...

Tuesday, April 6, 2004 4:42 PM CDT

Well, we have no results, but the scans went very quickly and smoothly, for which we are truly grateful. We should hear on the scan results tomorrow, and we'll let everyone know as soon as we know anything.

Spencer did really well today. We were able to get the contrast liquid down him without having to do the NG (tube down his nose). He got the x-rays done while the contrast was going through him. That was really traumatic for him and for us, but it was short lived. The CT scans were really much better than last time. The technicians were great. They let Spencer sit on the table and ride up and down and back and forth, and let Mike sit up on the table with him. They had bubbles and toys and Spencer did amazingly well through the whole thing. He cried some, but he was really very peaceful and calm through the whole thing, and we finished before noon, which is when they anticipated starting them, so we were very excited and relieved.

Now the wait begins, and we are still anxious, but we are feeling much better now that the actual tests are completed. Mike says it's kind of like taking your finals--the worst is the test, and it's over, and now we just have to wait and see how we did.

Thanks to everyone for everything. We really felt everyone's prayers today and we were really blessed with a smooth ride! Thank you!

Shauna

Monday, April 5, 2004 9:19 PM CDT

TOMMOROW IS EVALUATION DAY! We found out late this afternoon that they have scheduled Spencer's evaluation scans for tomorrow, April 6th. We are afraid and excited all at once. We are hoping to have the final word before we come home from the hospital, but we're not even sure that we will get the scan results tomorrow. We will check Spencer in at 9:00am tomorrow. Between 9:00 and 10:00 he will drink a contrast fluid. Between 10 and noon he will get his port accessed and wait for the contrast to go through his body. Then, scans should start around noon. Mike and I are planning on fasting and we welcome anyone that would like to join us. They are going to try the scans without anesthesia. His first CT Scans were very traumatic for him. Mike and I held his arms down and it took a long time to get the scan. He was crying and screaming the whole time--he was terrified of the moving bed and the cylinder that they put him in. We are praying particularly that Spencer will be peaceful enough to be able to get the scans without anesthesia, and for us all to feel peace no matter what the results.

His Vincristine treatment went well today. His White Blood Cell Count was 4.3, his Red Blood was 10.2, and his platelets were 50 something--the same as when Mike took him in on Thursday--too low, but not low enough for a transfusion. On Wednesday, Annie's Joy School class is going to a farm in Georgetown and all of the family is invited. I asked Dr. Sharp for permission for Spencer to go--they are going to see some new baby goats. Dr. Sharp okayed the trip, which is exciting. Spencer will love it, I'm sure.

Sophie and I are feeling a little better. I think we are over the worst of our colds. And I'm so grateful that Spencer didn't get it, too. After we got home from getting his chemo, he ate lunch and went swimming in our little swimming pool in the back yard. He had a really good time. We went for a walk to the store to get milk and a few other things and Spencer wanted to run, so I got him out of the stroller. I'm paranoid with his low immune system and his low platelets--every bump and scratch stresses me out. Well, Spencer was running on the way home and tripped and bloodied both knees. I tried to put him in the stroller, but he wanted to keep running. A few yards later, he fell and skinned them again. He fell three times on the way home. I think the vincristine was affecting his walk, because it looked like he was dragging his right foot a little when he ran. Anyway, I finally put him in the stroller to get him home, which totally broke his heart. When we got home, I scrubbed his knees with anti-bacterial soap and put neosporin and bandaids on both knees. I feel sad that I can't just let him be a kid without totally stressing out about every move he makes.

I talked to a mom at the clinic today whose daughter was diagnosed at 19 months and is now 4 years old and in remission. I told her that we were getting scans this week, and she said that she understood our panic. She said that she is the one who gets terrified by every test and scan, not her daughter. Her daughter has had and overcome one relapse already. Relapse is unfortunately a far too common word in the cancer world. I'm realizing that this is going to be the rest of our lives. We will never be free from the fear of cancer--even when it's gone, you live in the shadow of fear of it's return. It makes me realize how important it is to live every day to its fullest. We can't just plow through this period of chemo and hospital stays and think that once we get through this we will be able to enjoy life, although I catch myself thinking that every now and then. This is our life and we need to enjoy it and cherish everything about--even the chemo trips.

I've written a novel and Spencer just got out of bed for the 15th time since we put him down 2 hours ago, so I'd better go escort him back. We will post news of the scans as soon as we know anything and we would really appreciate everyone's prayers on Spencer's behalf tomorrow.

Shauna

Saturday, April 3, 2004 4:04 PM CST

Spencer has been running a fever off and on over the last few days. Nothing over 101 yet, and he's still playing and eating, so hopefully it will just pass on its own. We are continuing neupogen over the weekend. That's an awful thing--giving your child a shot. It's amazing to me (Shauna) how forgiving Spencer is, though. I come at him with a needle, hold him down and poke his leg and then he lets me hold him and love him better while he cries. If someone kept doing that to me day after day, I don't think I'd be so forgiving.

We didn't hear yesterday about the scheduling for the scans, so Monday morning when I take Spencer in for his Vincristine treatment, hopefully they will have something firmed up.

Sophie's pediatrician called and gave us the results of her blood work. She is only slightly anemic now. Her hemoglobin levels were up from 8.6 to 10.2 and her hematocrit was up from 25 to 32. So, we have to give her iron twice a day instead of three times a day, and she will get checked in another month or so.

Sophie has a head cold and I have a chest cold, but so far Spencer has not shown signs of congestion. We are praying that he stays well while his immune system is down.

Shauna

Thursday, April 1, 2004 6:47 PM CST

Spencer got a red blood cell transfusion today--his platelets are also low (he's got small bruises on his legs and arms), but not low enough to get a platelet transfusion. I (Mike) took my turn taking him today to give Shauna a breather and we were there from 10am to 4pm. It went alright, but we had a few rough spots, and since I haven't written here for a while, I'm going to tell the entire sordid tale.

The first wrinkle came when Jennifer, Spencer's nurse accessed his port (that's when they poke him with a needle to get to the catheter bubble under his skin). We use numbing cream on the skin over the port so it doesn't hurt, but the cream takes time to work and then only works for so long. I had put it on 20 minutes prior and though it would be working by then, but... it wasn't. Turns out there are 2 different brands of cream - one takes 20 minutes and the other takes 45 minutes to take effect. We apparently have the kind that takes longer. ANYways, she poked him and he felt it and it hurt. I felt bad about it. Luckily, he got over it pretty quickly.

Then, about midway through the transfusion, Spencer was climbing in and out of his chair and must've stepped on his IV tube, because one of the joints came apart and it started leaking blood all over the floor. I consider myself a pretty mellow guy, for the most part, but it was hard not to panic. I survived though -- I clamped the Spencer-end of the tube and then turned off the pump (there was no clamp on the pump-end of the tube) and then asked one of the volunteers to go get a nurse to re-connect him. Shauna has had this fun experience three times already, but it was a first for me.

The only other tough time we had was when I had to change his diaper (WARNING: poop story ahead -- skip this part if you um... don't enjoy poop stories). Let me start out by saying that Spencer doesn't like to have his diaper changed, especially when it's... you know. He would much prefer to run around with... well... you know. So he was crying loudly as soon as he figured out what I was doing. And to make things worse, we had diapers but NO WIPES (and I really, really needed wipes), so I had to use wet paper towels. I won't describe for you the exquisite color and texture of the poop, because nothing ruins a good poop story faster than too many details, but I will say that I found the damp paper towels to be utterly inadequate for the job. You might say that I have a new appreciation for real diaper wipes. I'd venture to guess that Spencer does too.

But, in spite of all that, he did pretty well, considering. It's probably good for me to have experienced some minor crises so that I have empathy when Shauna asks me to schedule a day off work to take a turn (and she brings Annie and Sophie with her -- I'm way too chicken to try that).

We still don't know the exact day that he'll be evaluated, but probably it will be late next week. Meantime, he goes back in on Monday for Vincristine, if not sooner (depending on whether the bruising gets worse over the weekend). We should know by tomorrow or Monday for sure what day he'll get scanned.

On the job front (for those who aren't aware, things are a little bit uncertain with my current employer right now), I got a call from a recruiter today about a position in Tulsa that sounded PERFECT for me, except that it's in Tulsa. We really don't want to have to re-locate in the middle of Spencer's treatment. The recruiter said that I could be on travel status for a few months to make sure it was a good fit, but that would be even worse, especially with everything that will be happening in the next couple of months (evaluation, surgery, daily radiation treatments, etc). Things may yet work out with Sears, though, and I have a couple of other local prospects that may also pan out. We're not really panicking about it. Yet.

Well, that about covers it, I guess. Good night all y'all (2 years in Texas and I still can't pull off "y'all"!), and as always, thanks for the love and support.

Wednesday, March 31, 2004 9:52 PM CST

We had a really good day today. We had a gift card to Walmart, so the kids and I (Shauna) went shopping this morning. Annie and Spencer were darling. Spencer was running up and down the aisles looking at all of the toys. Annie was showing toys to Sophie that she thought she might like. We ended up getting an inflatable swimming pool and a giant bucket of no spill bubbles with three wands--one for each of the kids. They were so thrilled. Annie and Spencer also got suckers at check out, which we NEVER do, so they thought that life was just about perfect. Then we did the drive thru at Wendy's and got chicken nuggets. We went home and had a little picnic outside. The kids ate their chicken nuggets while I blew up the swimming pool. Then, Sophie napped and Annie and Spencer went swimming. They were cold after swimming, so we filled the bath with warm water and bubbles, and all three had a bath together. Then we went outside and blew bubbles and went on a walk. Then we came back and watched a movie for rest time. It was so wonderful to just have a day of fun where we could forget about the stress of cancer and just let the kids enjoy being kids.

Spencer is bruising, so he'll probably need platelets tomorrow along with the red blood cells. Mike is taking Spencer tomorrow since he couldn't on Monday. They should schedule his scans for next week. I took a bunch of pictures of our day today, and I'll try to get them posted tomorrow.

Shauna

Tuesday, March 30, 2004 5:15 PM CST

I spent the entire morning on the phone (usually on hold) going between the hospital and the insurance company. It was so frustrating. The hospital had billed something as a miscellaneous charge, which the insurance denied payment on, but neither one of them could tell me what the charge was actually for and why they were denying it. After almost three hours of frustration and calling back and forth between one and the other, the hospital said it was a nutritional consultation that Spencer had in the hospital when he had RSV and Rotavirus. The visit, which I remember, included a girl coming in and asking if there was anything that Spencer might like on his food tray that would help him start eating again. At the time I just thought it was someone from Food Services. Anyway, the hospital says that the insurance won't cover nutritional consultations. So, I finally called Mike and turned the battle over to him. It's so frustrating to have the insurance company say I need to call the hospital and the hospital say I need to call the insurance company, but neither one willing to just do the calling and talk to the person they need to talk to.

I must admit, though, I have had far fewer battles than I expected. Spencer has had over 90 claims so far, and I have only had to fight a handful. It's just a pain to have to waste time over.

This morning, Annie got up and said, "Spencer has purple lips." It's pretty true. His lips are not their usual deep red color, which means he's low on red blood cells. I'm sure he'll need a transfusion on Thursday, and I'm glad that I made the appointment for Thursday and not Friday. We'll see how his color is tomorrow--I might even take him in in the morning if he gets much more pale. I hate the guessing and worry every day of whether the bruise on his arm or leg, or the color of his skin is bad enough to go in to the doctor or not.

Sophie is climbing the stairs, so I'd better go.

Shauna

Monday, March 29, 2004 2:30 PM CST

Today's visit went smoothly. I (Shauna) ended up taking all three children to the clinic, because Mike had things going on at work. Spencer's blood counts look pretty good. His white cell count was 13.7, his red blood cell count was borderline, so we'll go back in on Thursday for more blood work and a possible transfusion. We'll set up his scans at that time for probably next Thursday or Friday, which is very exciting and scary all at once. Mike and I are getting really anxious to know how the cancer has responded to the chemo.

I have to admit that I was feeling some self-pity this morning as I headed back to the hospital again with all three children after having spent practically every day last week there. But, without fail, just when I start to feel sorry for myself, the Lord reminds me that there are those with greater trials than my own. One of my friends from the clinic, another cancer mom whose daughter has acute lymphoblastic lymphoma which was diagnosed on Christmas Eve of last year, found out she was pregnant shortly after her daughter was diagnosed. I ran into her today and asked her how her pregnancy was going. She was expecting twins and lost both of them last weekend. She was 15 weeks along with a little boy and a little girl. She hasn't even recovered from her miscarriage, and she is back at the clinic for her daughter's treatment. It is humbling to see the other families who are dealing with cancer just like us, and to see the grace and composure that they are maintaining through it all. It makes me want to try harder and be stronger.

My sister sent me a book by Erma Bombeck called, "I Want to Grow Hair, I Want to Grow Up, I Want to Go to Boise" about children surviving cancer. She went to a summer camp for cancer kids and instead of hopelessness, found hope. She says, "I couldn't pity them. Pity is reserved for those who have no fight left in them. They reminded me of candles in the wind who accept the possibility that at best they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light." Mrs. Bombeck goes on to quote the movie "Chariots of Fire," which is one of Mike's favorite movies about a runner named Harold Abrahams, who was a member of the 1920 British Olympic team. She says, "After Harold lost a race to his arch-rival, he felt sorry for himself and said stubbornly to his girlfriend, 'If I can't win, I won't run.' She answered flatly, 'If you don't run, you can't win.'"

That's true for all of us.

Shauna

Sunday, March 28, 2004 1:32 PM CST

Friday was crazy. Mike's mom and I took all three kids in the morning to the clinic. We left at 8:00am, and I thought we would be there early for our 9:00 appointment. But, there was an accident on I-35 that brought traffic to a stand still. It took us an hour and a half to go 5 miles. Spencer was beside himself being strapped in his seatbelt for that long. He kept trying to wiggle out of it. I was stressed that he was going to deaccess himself in the process. Sophie hadn't had breakfast yet, so she was hungry, and Spencer's screaming made her cry. Annie had to go potty, and was crying that she had to go NOW. I was stopped in the middle lane of traffic, and there was no way I was going to be able to get off of the freeway. It was a nightmare! The drive that usually takes 30 minutes took us 2 hours--we arrived at the clinic just after 10:00am. Spencer was just in a bad mood by that point, and was tired from a poor night's sleep the night before. We got there and got settled in, and then Annie, Sophie, and I headed back to Round Rock for a playgroup for Annie while Grandma Jones stayed with Spencer. After playgroup the girls all headed back to the hospital to finish up treatment with Grandma and Spencer. We got out of there a little after 4:00pm, and we were all exhausted. Then we had rush hour traffic all the way home, but we survived it, and Spencer has been on cloud nine not being accessed at home. He was really sick yesterday morning from the chemo and was dry heaving until I gave him some Zofran. After that, he made a good recovery and was running around the house playing hard the rest of the day. He still forgets that he is not accessed and doesn't have to have permission to move, but he gets really excited when he remembers again.

Mike took Annie to church today and I am home with Spencer and Sophie. It's hard to not be able to go to church all together as a family each Sunday, but it would be even worse to have Spencer come down with something and end up in the hospital, so we are doing what we need to right now and looking forward to better times.

Mike is going to take Spencer to get his Vincristine treatment tomorrow. I am really worn down from last week and coming down with a cold, so he is taking work off for the morning. There's a single mom at the clinic with a daughter with cancer, and I just don't know how she does it. Mike and I rely on each other so much.

Well, Spencer wants a little attention now, so I'll go. Thanks to everyone for keeping Spencer in your prayers. At playgroup one of Annie's friends said the prayer on the food and one of the first things she said was, "Please help Spencer not to have cancer anymore." I was really touched. Her mom said that there isn't a prayer that comes out of that little girl's mouth that doesn't include Spencer. We appreciate everyone's prayers and thoughts. It makes a huge difference!

Shauna

Thursday, March 25, 2004 9:07 PM CST

Today was a little better at the clinic. Spencer was happier and less restless. He still doesn't feel well, but he's getting used to being constantly attached to the iv bag. He fusses until you give him permission to move anywhere. It will be great to be able to deaccess him tomorrow. We are finishing up Week 9 of treatment. During week 11, Spencer will have his first evaluation since starting chemo. They will do bone scans, CT chest and abdominal scans, and blood work to see if the tumor is operable. Assuming that it is operable, they will remove it the beginning of Week 12. Right after surgery, radiation begins. The radiotherapy will be every day of the week, with weekends off, for five weeks. It will require sedation every day, which I'm not excited about. Chemo will continue during this time with only slight alterations to the regimen. It's going to be a tough time, but we will have a family member here to help pretty much solidly through the entire radiation schedule.

Spencer was so sweet tonight. He was really tired and not feeling well, so he climbed up on my lap with his favorite blanket and rocked for a long time. When I had to nurse Sophie, Mike took a turn in the rocking chair with him and then carried him in to tuck him into bed. He went totally willingly and was soon fast asleep. One more night of IV--we can handle one more night.

We should find out about Sophie's blood work tomorrow. Hopefully her iron levels have come up some since her last visit. She has only gained 2 ounces in the past month, which is less than we were hoping for, but at least she's gaining. She and Spencer are so cute together. Her face lights up whenever she sees him and she wants to play with him all the time. She sticks her fingers in his face and pats his head, which is totally offensive to Spencer usually, but he tolerates Sophie and even finds it humorous most of the time. Annie is trying to help out. She begs to carry Spencer's back pack IV around for him all the time. The trouble is, she thinks it's more like a leash than anything and that she can lead him around the house wherever she wants to go as long as she has his backpack. We're working on that one.

Shauna

Wednesday, March 24, 2004 8:06 AM CST

It has been a rough week. Monday, Spencer and I (Shauna) spent from 9:00am to 5:00 pm at the clinic getting chemo. Yesterday, it was from 9:00 to 1:00pm. Spencer is tired and cranky and not feeling well. Yesterday he was incredibly pale--he looked terrible. He is sick. And he is sick of having the iv in and not being able to just walk where he wants to go without having to have an adult carrying around his iv bag and making sure he doesn't step on or get tangled in his tubing. It is really draining following him around--someone has to be at his side every waking moment. I've decided that it is a lot more work to do the treatment this way, instead of being admitted into the hospital. The upside is that Spencer gets to come home and sleep in his own bed and I think it is slightly less traumatic for him, although the daily trips to the hospital are really taking their toll already.

Yesterday was an especially hard day for me. Spencer was just cranky the whole time we were there. Annie was with us both Monday and yesterday and she was getting cranky and tired and whiny, too. It's hard to see Spencer so uncomfortable and not be able to do anything to help. It's hard to see all of the sick children coming and going. I was asked to sign as a witness on a do-not-resuscitate order for a sweet little two-year-old girl. She and Spencer were playing together and sharing crackers with each other. She has a brain tumor that was removed with surgery followed by chemotherapy, and last month the tumor came back, so now they are just left to pray and watch her deteriorate. The mother was very matter-of-fact about the whole thing, saying that they didn't want her to have to suffer more than she needed to. I could tell it was devastating for them. It broke my heart.


Mike took a turn today taking Spencer to get his chemo and I am taking Sophie and Annie into the pediatrician. Sophie needs follow-up blood work done on her iron levels, and Annie's allergies are terrible and she needs a renewed prescription of her allergy medicine. We are all tired and feeling spread a little thin. I was telling Mike I feel like I do on a long run. I start out strong and then I hit a wall where it's all I can do to keep putting one foot in front of the other. That's where we all are right now. But, as I am typing this just now I remember that I've learned that if I just keeping pushing through that wall, I get my second wind and running is fun again. We just have to keeping pushing through to that second wind. Mike gave me a priesthood blessing last night, and I'm feeling buoyed up again this morning.

Shauna


"And may the Lord Jesus Christ grant that their prayers may be answered according to their faith; and may God the Father remember the covenant which he hath made with the house of Israel; and may he bless them forever, through faith on the name of Jesus Christ. Amen"
--Mormon 9:37

Sunday, March 21, 2004 5:37 PM CST

It has been a quiet week. A good week. Spencer has done really well--hasn't come down with anything, hasn't had to go in for anything, and has been eating like crazy. We are gearing up for our long week of chemo ahead, but Mike's mom flew in yesterday, so we have help, which is great. Sophie and Spencer have been sleeping really poorly at night, so Mike and I are tired, but we can't complain, because everyone is well at the moment. We went to the temple in Houston yesterday and had a really wonderful time there. It was great to feel the peace and comfort that is always there. It was the first time we had been to the one in Houston, and it was beautiful. I'll post a picture of it on the photo page.

Life is good. We have daily challenges, but we are feeling hopeful. We have three weeks left of the induction phase of Spencer's chemo. Then, they'll do scans to see how the tumor is and do surgery if necessary. We are really anxious and a little nervous for that, but we are looking forward to getting a better idea of where we are with his cancer. We are just focusing on getting through this week of chemo right now, then we can look ahead a little.

Shauna

Wednesday, March 17, 2004 11:06 AM CST

Today and yesterday have been pretty smooth sailing. Spencer seems to be feeling well and wants to play outside all day long. He is eating more variety and has learned several new words--"bubbles," "uh oh," and "run away!" which he uses anytime I turn on the vaccuum. Sophie threw up Monday night and acted sick through the night, but she is back to her perky self today, so hopefully it was just something disagreeing with her stomach and not an actual bug that could be passed on. She and Spencer are poking and prodding each other so much, it would surprise me if Spencer DIDN'T catch anything that Sophie got.

Spencer's Speech Therapist came today. She is impressed with his progress in so many areas--communication, interaction, anticipation, eating, coordination. He has really come a long way. It has happened, for the most part, since chemo started, which makes us wonder if part of his delays and obvious frustration was due to the discomfort of his tumor. I guess we'll never know for sure, but there has been so much progress lately, it's hard to believe they are not at least somewhat related.

Shauna

Monday, March 15, 2004 12:24 AM CST

Today's visit went well. I (Shauna) took all three kids, and they were all very well behaved. Spencer was in a good mood, considering. He even stepped up on the scale all by himself and didn't scream too much when they took his blood pressure and temperature. He's getting used to everything, I think. He did scream bloody murder when the nurse accessed his port-a-cath and missed the first time, so she had to do some wiggling with the needle, but who can blame the poor kid, and it was short lived. He was soon right back to playing. His counts all looked pretty good, so we get to stay home the rest of the week, which is good. AND they are trying to arrange so that we can do next week's five-day treatment between home and the clinic, thus avoiding a week long hospital stay, which would be great!

We are really grateful for all of the care and concern everyone has shown for Spencer and for our whole family. Thanks to everyone who has signed the guestbook. It's really nice to see familiar names and know that we are being thought of and prayed for. THANK YOU!

Sunday, March 14, 2004 9:27 AM CST

Spencer's transfusion went well on Friday, and the bruising has diminished. He goes in tomorrow for a Vincristine (chemo) treatment. By mid-next week, his blood counts should hopefully be nearing close to normal levels again. Then on Monday 3/22 we start a 5-day VTC treatment (Vincristine, Topotecan, Cyclophosphamide) that will be done at the hospital (yuck). We like the VTC treatments better than the VAC treatments (Actinomycin-D insteand of Topotecan) because Spencer seems to respond better to them, but the 5-day hospital stay is pretty grueling. Fortunately, my mom will be in town to help out.

Spencer's counts are still too low for him to venture out of the house much, so Shauna will be taking Sophie and Annie to church today while the boys stay home. Hopefully next week we'll be able to all go together.

Annie still has the majority of the splinters in her hand (see last post). We got a few more out using a needle, but they are all completely beneath the skin so digging them out is painful. There doesn't appear to be any infection and they are so fine that they may not need to be dealt with (we hope). We'll just keep an eye on it for the time being.

Thursday, March 11, 2004 10:58 PM CST

The bruises were a concern for us, so Shauna called the doctor today and they wanted to see him. His blood counts are totally depleted -- platelets (the reason for the bruising), white cells, neutrophils, hemoglobin, red cells were all nil. They asked if we wanted to have him admitted to get transfusions today, but Shauna opted to come home and go in for an office visit tomorrow. I'm going to take a turn taking Spencer in tomorrow -- I haven't been to the hospital in a few weeks.

In spite of the low counts, Spencer is still playing and eating well. He doesn't realize that he should be lying in bed bemoaning his fate -- one of the benefits of being so young. He does get tired more often and more easily than normal, but he manages to find enough energy to wrestle with me and to chase Annie around the house.

Speaking of Annie, she has an arm full of wood splinters tonight. She fell down playing outside by a wood fence and got about 50 or so tiny splinters in her forearm. We put some of Spencer's numbing cream on her arm so that I could pull them out, but it was too much for her to handle even with the cream. Shauna is at Enrichment (church function) tonight and I finally gave up trying to hold her still enough to pull them out. She was pretty traumatized by it all and fell asleep at about 7:00, poor kid. I think we will have to double-team her to make it work.

Good night all.

Wednesday, March 10, 2004 11:01 AM CST

Spencer's counts were decent, so we are home for the week. I'm noticing lots of little bruises all over him today. We did play outside a lot yesterday and he fell down several times, so I'm not sure how much is normal and what isn't. But, he seems to be feeling a lot better and is branching out a little with his food choices. His latest favorite is a bowl of Shredded Wheat with milk. He also ate an apple today, which he hasn't done in a long time.

His Speech Therapist and an Early Childhood Intervention Specialist came this morning. He had a good time playing with them. He and Annie have been cute together today (when they aren't fighting over every little thing, that is). They have been hugging and holding hands a lot. It's cute to see them affectionate with each other. That's a big step forward for Spencer with his sensory integration dysfunction, and it's great to see him hugging and kissing and enjoying touch.

Speaking of touch, he wants me to stop typing and hold him. Gotta go.

Shauna

Monday, March 8, 2004 1:34 PM CST

The visit this morning went well. Spencer got his vincristine and neupogen without much ado, and we don't have to go back until next Monday, pending good counts that we should receive this afternoon.

Sophie's fever is gone and she seems to be feeling a little better. She's still not quite herself, but she's not lethargic like she was yesterday. We are grateful for that.

Annie had a great time at the clinic with Spencer today. The Child Life staff was great and helped her do a craft--which she absolutely loved. She is always sad when we have to leave. Spencer is always ecstatic.

I'm afraid to get to excited about staying home all week, for fear that his counts will land us back at the clinic soon. But, we're all hoping for a quiet week at home.

Sunday, March 7, 2004 9:30 PM CST

Sophie started running a fever while we were at church today. The girls went to church while the boys hung out at home. By the last hour, Sophie was really lethargic and just lying on my shoulder. We got home, and she had a 101 degree fever. She slept most of the evening. It's probably the same thing that Spencer had earlier. Hopefully it will be as short lived as Spencer's was.

Spencer is still not acting like he's feeling great. He is tired a lot of the day, and is really cranky. He doesn't want to be left alone for a minute, and comes to sit on Mom or Dad's lap whenever we are sitting down. We are hoping that he starts perking up again soon.

Annie shared her testimony in church today. She did a really nice job and said that she was thankful for Jesus and hoped that Spencer would get better soon. It was really sweet.

Shauna

Saturday, March 6, 2004 8:09 PM CST

We had a good day today. Mom got two naps in an effort to catch up on two months' worth of sleep deprivation. We all went on a walk and then had a little picnic in our backyard, which was lots of fun. The weather was beautiful and we got a little sunshine, which always does a soul good. Spencer is still not acting like he's feeling great. He gets hungry, but doesn't want to eat anything. He wants to be carried up and down the stairs--it seems like it's too big of an effort for him to do it himself. On Thursday night he started running a fever, so we took him in on Friday and he got an antibiotic shot and blood cultures done. His fever was 101.3 when we took it at 6:00 am on Friday, but Tylenol brought it down, and it has stayed pretty low ever since. He was so mad to be drug into the clinic again on Friday--our fourth trip in five days. He cried and cried and threw himself on the floor, where he lay with his face in the floor for much of the time. But, he survived it, and is happy to be home today. He hasn't acted nauseated, but his appetite is suffering somewhat. Hopefully, it will pick up again soon.

We go in on Monday for his next Vincristine treatment. So, we get one more day of life at home before the trips to the clinic start again. When we were in there on Friday, Dr. Sharp felt Spencer's stomach and said it felt soft--that's a very good sign. We hope Spencer feels better soon. Even though the VAC treatments are shorter, they seem to be more taxing on his body. It's hard to see him feel yucky, and it's frustrating that he can't tell us what it is that is bothering him exactly--for him and for us. This next week his counts should drop even more, so we will be spending the week at home.

We are over half way to his first evaluation and surgery. We are getting anxious and nervous to see how the tumor is doing and whether it is operable or not. That will be a big milestone in his treatment, and should happen in April sometime.

We appreciate everyone so much. It's nice to know that we are not in this all alone. We have been overwhelmed by the kindness that everyone has shown us. It's amazing to feel the love of so many people for one little boy and his family. We are so grateful--thank you!

Thursday, March 4, 2004 4:44 PM CST

We've made it through another chemo treatment. Shauna took Spencer and the girls to the office on Wednesday and spent all day there while the gave Spencer his treatment and fluids. Then they sent him home with a portable IV pump and bags in a little backpack so that he could continue to get fluids (to flush out the chemicals) and accompanying drugs (Zofran for nausea, Mesna to prevent ulcers).

The upside of this arrangement is of course that we didn't have to stay at the hospital overnight, which we are really glad of. The downside is that Spencer does not really seem to understand that he cannot just get up and walk away from the backpack with the pump in it when his line is connected, and when we remind him, he gets frustrated. It's a full-time job just watching to make sure that he doesn't accidentally rip his tube loose.

We also had some slight technical difficulties with one of the pumps (luckily, they gave us a backup), but overall I think it still beats a hospital stay. I (Mike) worked from home today so that Shauna and I could tag team Spencer and all his pump-carrying needs and the girls. Then this afternoon, Shauna took Spencer and Annie to the office to get his blood counts checked and to get de-access his port-a-cath. His counts are pretty low (white = 2.something, and hemoglobins = 8.6), especially considering that this treatment is going to make them drop even more. So we'll have to give him daily neupogen shots and possibly a transfusion on Monday.

The really good news is that he does not seem to be nauseated with this treatment and still has a normal appetite. Last time he got this particular combination of drugs (Vincristine, Actinomycin-D, and Cyclophosphamide) he was very sick, but we were never sure whether it was from the chemo or the rotavirus, so we were a little nervous about this week. He has been a little on the cranky side, but that is certainly understandable.

Shauna took some pictures recently, so I will try to get those posted this evening.

-Mike

Tuesday, March 2, 2004 8:30 AM CST

Spencer didn't start chemo yesterday. They postponed it because of his vomiting, but we also got good news. They are arranging things so that we can do this, and all future VAC treatments from home. His treatment will start tomorrow and we will do a lot of it in the clinic. Then, he'll come home on IV fluids and we will give him his last dose of mesna from home. Then, we'll go back into the clinic on Thursday and they will deaccess him there. That means we will only have to have week long hospital stays every 6 weeks for his VTC treatments.

He hasn't thrown up again since night before last, and he's acting totally fine, which is a relief. His counts looked good yesterday, so we are enjoying a few more days of normal life while his counts are up.

Shauna

Monday, March 1, 2004 7:31 AM CST

Last night around 11:00 pm, Spencer started vomiting repeatedly. It lasted until around 2:30 and then he slept the rest of the night. He doesn't have a fever, so as soon as the oncologist's office opens, we'll call and see what to do. His chemo is scheduled to start at 10:00 this morning. We'll see what happens.

Sophie is also going in to the doctor this morning. At her one year check up on Friday we were told that she is severely anemic, so she has to come back in today for more tests. Her hemoglobin was 8.6. Spencer gets transfusions when his drops below 9. She's not eating solids very well still, which concerns us, but she's on iron three times a day since this weekend, and we hope her iron counts come up soon.

So, Mike is taking Sophie in and I'm taking Spencer in and Annie is coming with me for part of the day, at least. This will hopefully just be an overnight visit, if all goes well and he doesn't have rotavirus again. We would appreciate prayers for Spencer to be able to endure his chemo well and not have the same eating/dehydration issues that he did six weeks ago.

Shauna

Monday, March 1, 2004 7:31 AM CST

Last night around 11:00 pm, Spencer started vomiting repeatedly. It lasted until around 2:30 and then he slept the rest of the night. He doesn't have a fever, so as soon as the oncologist's office opens, we'll call and see what to do. His chemo is scheduled to start at 10:00 this morning. We'll see what happens.

Sophie is also going in to the doctor this morning. At her one year check up on Friday we were told that she is severely anemic, so she has to come back in today for more tests. Her hemoglobin was 8.6. Spencer gets transfusions when his drops below 9. She's not eating solids very well still, which concerns us, but she's on iron three times a day since this weekend, and we hope her iron counts come up soon.

So, Mike is taking Sophie in and I'm taking Spencer in and Annie is coming with me for part of the day, at least. This will hopefully just be an overnight visit, if all goes well and he doesn't have rotavirus again. We would appreciate prayers for Spencer to be able to endure his chemo well and not have the same eating/dehydration issues that he did six weeks ago.

Shauna

Thursday, February 26, 2004 1:44 PM CST

Sophie's birthday yesterday was a fun time for everyone. We can't believe that she is one year old already. Time goes by so fast. Spencer is doing really well. The rest of his hair is slowly falling out. I rub his head and can feel totally smooth spots. He is really happy and cuddly and seems to be totally unaware that he is sick. I guess that's the beauty of children with cancer, or anything for that matter. They don't know that they should be holed up somewhere feeling sorry for themselves. Instead they are out playing and laughing and loving life. Spencer is learning to talk more and more and we are enjoying him so much. He now says, "I wanna EAT!" and "MINE!"

The weather is warming up here again, so hopefully we'll be able to get some good walks in before chemo starts on Monday.

Shauna

Tuesday, February 24, 2004 8:16 PM CST

Another good day. We spent the entire day at home and didn't miss running around one bit. Spencer accompanied Mom on a walk first thing in the morning. Then, his Early Childhood Intervention Specialist came and played with him, which he enjoyed very much. Oh, and Spencer and Sophie are deciding that they are a comedy team. Spencer starts out by saying, "NO!" very sternly to her, then she laughs hysterically, which makes him laugh hysterically, which makes her laugh hysterically, which. . .well you get the idea. Then they'll tire of it for a few minutes before Spencer yells, "NO!" again and they start all over. It's very funny to watch. They also enjoy sticking their fingers in each other's mouths--everyone thinks that's pretty hilarious. Everyone, that it, except for Mom who is trying to keep germs out of Spencer's mouth and keeps telling them to stop doing it, which they completely ignore.

We moved Annie in to Spencer's room a few nights ago, and they BOTH think that that's pretty much a party waiting to happen every night. Last night, Mike went in and tucked them both in, singing songs and saying prayers, then he left and for the next 2 hours we heard giggling and talking and the occasional fight, followed by more giggling and talking, before they both finally dropped from sheer exhaustion. It's fun to see the friendships developing between our children--it's one of our favorite joys of parenthood so far.

Thanks again to everyone for everything. We surely couldn't do this without everyone's support and prayers. We appreciate you all!

Shauna

Monday, February 23, 2004 11:54 AM CST

Well, life is looking pretty darn good today. Sophie slept through the night, for starters. That's a first in probably 4 months at least. I (Shauna) got a good walk in this morning. Spencer's visit to the clinic went really smoothly this morning--in and out in under an hour. His counts are coming up, and he doesn't need neupogen this week. In fact, he doesn't have to go back until next Monday for his VAC treatment, so we get an entire week of semi-normal life before hospital life starts up again, if all goes well.

Monday, February 23, 2004 11:54 AM CST

Well, life is looking pretty darn good today. Sophie slept through the night, for starters. That's a first in probably 4 months at least. I (Shauna) got a good walk in this morning. Spencer's visit to the clinic went really smoothly this morning--in and out in under an hour. His counts are coming up, and he doesn't need neupogen this week. In fact, he doesn't have to go back until next Monday for his VAC treatment, so we get an entire week of semi-normal life before hospital life starts up again, if all goes well.

Sunday, February 22, 2004 8:56 PM CST

Spencer goes in for his Vincristine treatment in the morning. Sophie is still not sleeping well--we don't know if it's her ear infection not clearing up, or her teething, or the cold that she has apparently picked up somewhere in the last few days, or a combination, but I (Shauna) am getting up anywhere from 4-8 times a night with her and it's wearing me out! Spencer seems to be doing well, though. He has some bruising on his legs, which could mean low platelets, so we'll see in the morning how his blood counts are.

It's settling in, the longevity of his treatment. It's overwhelming to think about keeping up this pace of hospital stays and trips to the doctor for another 10 months. It is hard to fight off the self-pity that keeps creeping in, but I read a great quote by Helen Keller on another caringbridge site (thanks, Morgan!) that said, "Self-pity is our worst enemy and if we yield to it, we can never do anything good in the world." I was just re-reading some notes that I have from a talk that I heard Elder Jeffrey Holland give while I was a student at BYU. He said that as our journey becomes difficult and trying we should remember the counsel of an Olympian Swimming Medalist. The key to being a true Olympian is to stroke when you don't want to stroke, and kick when you don't want to kick. Everyone starts out as Olympians, the real test comes 90 meters out.

We just have to keep swimming.

Shauna

Thursday, February 19, 2004 6:38 PM CST

Spencer got a transfusion today. It was pretty low key, except, in true Jones style, we had to have one moment of mayhem. Spencer was sitting on the floor getting his nupagen injection through his port-a-cath, and Sophie was crawling around playing with toys. I (Shauna) turned just in time to see Sophie do a face plant into the floor and come up with a bloody mouth. One of her bottom teeth ripped up her bottom lip but good. So, I ran to pick her up and was trying to clean up her bloody mouth when I looked over and Spencer had walked away from his nupagen and unhooked his tube partway down. He was dripping blood out of his tube. I freaked out and ran over to him, which made him think he was in trouble, so he started whipping his body around, trying to not let me grab his tube. Blood was flying everywhere. I got a nurse and we soon had the situation resolved, but it was a little nightmarish at the moment to see two of my children bleeding at the same time.

Spencer's white blood count is 0.4, so we have to be really, really careful about washing hands and staying away from any possible sickness. If he runs a fever, we'll end up back in the hospital and we do NOT want that. We go back in on Monday for Vincristine and another blood count check. We are looking forward to the weekend with Dad home and a little quiet time.

Shauna

Wednesday, February 18, 2004 10:39 AM CST

We have happy news. Spencer started walking yesterday afternoon. He is still really wobbly and his knees just give out on him occasionally, but he gets back up and is getting stronger and stronger. He's been really happy, too. He's cuddlier and more social. He learned to clap night before last and can now say, "Don't want it!" and "Mom, where are you?" I reply, "I'm in the kitchen, Spencer, where are you?" Then he laughs hysterically. It makes him really excited that he can communicate and people can understand him. His other new favorite phrase is, "Why not?" This morning he woke up early and so I put him out on the floor with a blanket, fruit and grain bar, sippy cup of milk and Tellytubbies. Then I went back to bed. Every few minutes, we'd hear giggling. Apparently, Tellytubbies is a comedy. :0) It was so cute that we couldn't go back to sleep and ended up getting up with him.

The only complaint we have is that Spencer seems to be having lots of bad dreams lately (who can blame him?) and he wakes up crying several times in the night. Mike gets up and goes in and he settles down pretty easily, but it's still pretty tiring for Dad. Sophie is sleeping better again now that she is on antibiotic, so Mom is sleeping a little better. If we could all have one good night's sleep, I think life would feel just about perfect around here. But we shouldn't complain, because we have so much to be thankful for.

Mike and I were talking the other night. Life is more challenging for us these days, but we feel really blessed in so many ways. We see on the news children being kidnapped and abused, and we realize that there are worse things than cancer. We are grateful that we know where our children are and we can comfort them in their suffering. Not every parent is so lucky.

We are so grateful for the support system that we have. It makes a world of difference just to know that people care and are thinking about us and praying for us. It's humbling to feel that much love. The other thing that comforts us is knowing that our Heavenly Father knows us and loves us, and He knows exactly how we feel. He, too, had to watch His only son suffer. He watched him die as well, and I know that He knows any agony and pain that we are feeling or might feel. He has truly comforted us and given us peace.

Shauna

Wednesday, February 18, 2004 10:39 AM CST

We have happy news. Spencer started walking yesterday afternoon. He is still really wobbly and his knees just give out on him occasionally, but he gets back up and is getting stronger and stronger. He's been really happy, too. He's cuddlier and more social. He learned to clap night before last and can now say, "Don't want it!" and "Mom, where are you?" I reply, "I'm in the kitchen, Spencer, where are you?" Then he laughs hysterically. It makes him really excited that he can communicate and people can understand him. His other new favorite phrase is, "Why not?" This morning he woke up early and so I put him out on the floor with a blanket, fruit and grain bar, sippy cup of milk and Tellytubbies. Then I went back to bed. Every few minutes, we'd hear giggling. Apparently, Tellytubbies is a comedy. :0) It was so cute that we couldn't go back to sleep and ended up getting up with him.

The only complaint we have is that Spencer seems to be having lots of bad dreams lately (who can blame him?) and he wakes up crying several times in the night. Mike gets up and goes in and he settles down pretty easily, but it's still pretty tiring for Dad. Sophie is sleeping better again now that she is on antibiotic, so Mom is sleeping a little better. If we could all have one good night's sleep, I think life would feel just about perfect around here. But we shouldn't complain, because we have so much to be thankful for.

Mike and I were talking the other night. Life is more challenging for us these days, but we feel really blessed in so many ways. We see on the news children being kidnapped and abused, and we realize that there are worse things than cancer. We are grateful that we know where our children are and we can comfort them in their suffering. Not every parent is so lucky.

We are so grateful for the support system that we have. It makes a world of difference just to know that people care and are thinking about us and praying for us. It's humbling to feel that much love. The other thing that comforts us is knowing that our Heavenly Father knows us and loves us, and He knows exactly how we feel. He, too, had to watch His only son suffer. He watched him die as well, and I know that He knows any agony and pain that we are feeling or might feel. He has truly comforted us and given us peace.

Shauna

Wednesday, February 18, 2004 10:39 AM CST

We have happy news. Spencer started walking yesterday afternoon. He is still really wobbly and his knees just give out on him occasionally, but he gets back up and is getting stronger and stronger. He's been really happy, too. He's cuddlier and more social. He learned to clap night before last and can now say, "Don't want it!" and "Mom, where are you?" I reply, "I'm in the kitchen, Spencer, where are you?" Then he laughs hysterically. It makes him really excited that he can communicate and people can understand him. His other new favorite phrase is, "Why not?" This morning he woke up early and so I put him out on the floor with a blanket, fruit and grain bar, sippy cup of milk and Tellytubbies. Then I went back to bed. Every few minutes, we'd hear giggling. Apparently, Tellytubbies is a comedy. :0) It was so cute that we couldn't go back to sleep and ended up getting up with him.

The only complaint we have is that Spencer seems to be having lots of bad dreams lately (who can blame him?) and he wakes up crying several times in the night. Mike gets up and goes in and he settles down pretty easily, but it's still pretty tiring for Dad. Sophie is sleeping better again now that she is on antibiotic, so Mom is sleeping a little better. If we could all have one good night's sleep, I think life would feel just about perfect around here. But we shouldn't complain, because we have so much to be thankful for.

Mike and I were talking the other night. Life is more challenging for us these days, but we feel really blessed in so many ways. We see on the news children being kidnapped and abused, and we realize that there are worse things than cancer. We are grateful that we know where our children are and we can comfort them in their suffering. Not every parent is so lucky.

We are so grateful for the support system that we have. It makes a world of difference just to know that people care and are thinking about us and praying for us. It's humbling to feel that much love. The other thing that comforts us is knowing that our Heavenly Father knows us and loves us, and He knows exactly how we feel. He, too, had to watch His only son suffer. He watched him die as well, and I know that He knows any agony and pain that we are feeling or might feel. He has truly comforted us and given us peace.

Shauna

Tuesday, February 17, 2004 1:07 PM CST

Spencer had his Vincristine treatment yesterday, and it went well. He played and laughed any time there wasn't a doctor or nurse in the room. Last night, Mike and I played catch with Annie and Spencer. We took turns throwing the ball back and forth to each other. The kids had a good time, and Spencer really had a lot of energy, considering. He still can't walk. The doctor prescribed physical therapy for him, so hopefully that will help him.

Sophie also went to the doctor yesterday. She has infection in both ears. Her sleeping was getting progressively worse at night, until night before last she was waking up crying hard every 20 minutes. She's on anti-biotic, and last night was a better night for her.

Mike and I are feeling tired, between Sophie's nights and Spencer's days. Hopefully, Sophie will start sleeping better at night now. Spencer goes back in on Thursday for a blood check and a probable transfusion.

Thanks still for all of your prayers and thoughts.

Shauna

Sunday, February 15, 2004 10:50 AM CST

Spencer came home from the hospital yesterday morning to a few inches of snow on the ground. It was a fun day. Grandpa Sorensen made a snow woman and Annie made a little snow man. Spencer doesn't have the energy he used to, but he seemed almost back to normal yesterday. He still needs help to walk, but he's doing really well with everything else. We are so relieved to have him home again.

Thursday, February 12, 2004 11:32 AM CST

Spencer continues to do well this treatment. He hasn't seemed nauseated and hasn't thrown up. He's been playing and eating nutrigrain bars like they're going out of style. The nurses found him a bag of Cheetos yesterday, which he single handedly devoured and then wanted more. Grandma and Grandpa Sorensen have been spending lots of time with him at the hospital, spoiling him with plenty of play room time and walks around the hospital in his stroller.

The other day a couple of drops of Spencer's chemo fell on the hospital room floor. It was amazing--the nurse hurried out and came back with heavy gloves, goggles, face mask, gown and special heavy duty cleaner to wipe up the spill. I couldn't help but think, "All of that to clean up two drops, and you are pumping this stuff into my 2 year old's veins!" It seems to be shrinking the tumor some, though, which is encouraging. And we are all looking forward to Saturday when Spencer gets to come home again. It's hard on everyone to have the family spread out like this--Annie really misses Spencer, and says, "I sure wish Spencer could come home today" everyday. Spencer gets so excited when he sees his sisters at the hospital. He and Annie are very cute together. He jabbers at her and she says, "Okay, Bud." Only a few more days until he'll be home again! Of course, he has to go back again on Monday for his Vinchristine treatment, but I'm hoping that will be a short visit and then we'll have a few days of peace at home.

Shauna

Monday, February 9, 2004 11:52 PM CST

Spencer is back at the hospital, as planned. He started his chemo treatment tonight, and he'll get one every 24 hours for the next 5 days (that means a whole week of toxic diapers, on top of everything else!). The good news is that he seems to be tolerating his hospital room better this time around (though he had only been there for about half a day when I saw him). He spent a lot of time in the play room today, and was sitting up in bed when I came into the room. Shauna and Sophie and Grandma Sorensen spent the day with him at the hospital while Grandpa Sorensen and Annie held down the fort at home (I was at work).

He's still eating well, too, which is good. He got a dose of zofran and decadron (anti-nausea), which seems to be helping. We think that the Rotavirus probably had a lot to do with his hunger strike following his first round of chemo. We're hoping that his appetite will remain fairly constant this time. So far so good.

-Mike

Sunday, February 8, 2004 11:27 PM CST

Another good day for Spencer. He is playing and eating and jabbering about like he used to before he was diagnosed. He's having some trouble walking, which could be a result of the chemo drugs (they can mess up his nervous system and coordination) or it could be because of the time he spent in bed. In spite of that, he seems happy and his tumor is noticeably smaller already. It's good to see him this way, but it makes it that much more difficult to take him back to the hospital tomorrow. He goes in at 10:00 AM and Dr. Sharp will listen to his lungs (to make sure he's clear of the RSV) and determine whether or not he's ready to start his next round of chemo. Based on the way he's behaving thes last few days, I don't think Dr. Sharp will postpone the chemo.

A lot of people have asked what his treatment schedule looks like, so I'm going to put the details up here. Get ready for a bunch of long words that are hard to pronounce. His schedule goes like this:

Week	Drugs	Other		Week	Drugs	Other		Week	Drugs	Other
0: 19-Jan	VAC			14: 26-Apr		R		28: 9-Aug
1: 26-Jan	V			15: 3-May	VC	R		29: 16-Aug
2: 2-Feb	V			16: 10-May		R		30: 23-Aug	VAC
3: 9-Feb	VTC			17: 17-May		R		31: 30-Aug	V
4: 16-Feb	V			18: 24-May	VC			32: 6-Sep	V
5: 23-Feb	V			19: 31-May	V			33: 13-Sep	VTC
6: 1-Mar	VAC			20: 7-Jun	V			34: 20-Sep	V
7: 8-Mar	V			21: 14-Jun	VTC			35: 27-Sep	V
8: 15-Mar	V			22: 28-Jun	V			36: 4-Oct	VAC
9: 22-Mar	VTC			23: 5-Jul	V			37: 11-Oct
10: 29-Mar	V			24: 12-Jul	VAC	E		38: 18-Oct
11: 5-Apr	V			25: 19-Jul				39: 25-Oct	VTC
12: 12-Apr	VAC	E,S		26: 26-Jul				40: 1-Nov
13: 19-Apr		R		27: 2-Aug	VTC			41: 8-Nov

Key: (Here are the long words)V=Vincristine, A=Actinomycin-D, C=Cyclophosphamide, T=Topotecan, R=Radiation, S=Surgery, E=Evaluation

On the days that he just gets Vincristine, it's just an office visit. VAC treatments require a 2-3 day hospital stay; VTC treatments require a 5-day hospital stay (because they give it in small doses each day for 5 days). Tomorrow is a VTC treatment, so this week he'll be in the hospital for 5 days, which nobody is looking forward to. We're hoping he'll have enough energy that he'll want to spend some more time in the hospital playroom this time, which should help pass the time away.

Of course, this schedule is subject to change. If he is too sick or his blood counts aren't high enough then treatments can get postponed, which will shift the whole schedule. Hopefully that won't happen too often.

Saturday, February 7, 2004 11:46 AM CST

Life is feeling almost normal around here these days. Spencer is eating and drinking and talking and playing again. He still can't really walk, but he crawls around to get where he wants to go, or asks to be carried. He has little wisps of hair still--it's really quite cute. He has decided that Cheetos and Ritz crackers taste good to him, so he eats them night and noon.

We are debating about whether or not to start chemo again on Monday, or to hold off until Wednesday. He goes in Monday morning to see how his lungs are doing, and they will tell us if he CAN start chemo on Monday, or if they feel we should wait until Wednesday. If he CAN start treatment, then it will be up to us whether or not to start him or wait until Wednesday. Part of us wants to just get it all over with, and part of us wants to let him have a few more days of feeling good and being home.

Shauna

Wednesday, February 4, 2004 8:18 PM CST

Spencer's HOME! It is a glad day indeed. He has even eaten a little here and there. It's been rainy all day today, so we spent a little time hanging out in the garage, so that he could breathe the fresh air without getting wet. He loved it. He sat in the stroller and watched Grandma Sorensen blow bubbles and sing songs. He then thought it was really fun to sit in the driver's seat of the van for a while. Not going anywhere, just hanging out. Right now he is up playing with Sophie in his room with all of his toys. He is still really weak and can't walk very well, so he's crawling from spot to spot, but if we support him a little, he will even walk a little. It is so great to see him laugh and play. We haven't seen that side of him for at least a week. We found out today that his chemo treatment next Monday will be a five day hospital stay. He has big chemo treatments every 21 days, and every other treatment will require a 5 day hospital stay. The others will be 3 day stays. We are feeling sorry for Spencer that he has to go back so soon for so long, but we are going to try to make the most of the few days that he has at home.

Shauna

Wednesday, February 4, 2004 10:05 AM CST

Yesterday was a great day for Spencer. His blood counts are all up and he was taken off of oxygen. He even got a four hour pass to leave the hospital, which was huge because he has been in isolation and unable to leave his room since Thursday, poor guy. So, Spencer and I (Shauna) checked out and went for a walk in his stroller, went to Wendy's drive-thru and ordered chicken nuggets and a frosty (he ate some of the chicken nuggets and tasted the frosty), went home and took a walk around the neighborhood, and then Spencer fell fast asleep on the living room carpet for an hour or so before we had to take him back to his hospital room. He was NOT very impressed with that part of the day, but he went all night last night without oxygen and will hopefully be coming home today. YEA!

If he will eat and drink at home he doesn't have to go back into the hospital until Monday, which is the day he will have to check back in for his second big chemo treatment. Then the cycle of dropping counts and nausea and vomiting will start all over again. But, for now life is good and we are really excited to bring our little boy home for a few days. We just can't thank everyone enough for all of the kindness and prayers that we have received. I started out trying to keep track of everyone's deeds so that we could eventually send thank you cards, but they are pouring in so fast and furiously that I have lost track of all of them. I apologize if we don't thank you all individually, but PLEASE know that we are overwhelmed and incredibly grateful for every single act of kindness and generosity that we have received. You are all wonderful!

Shauna

Monday, February 2, 2004 8:45 PM CST

Today has been a much better day for all of us. Sophie was discharged this morning and after a big long nap this afternoon, you'd never have guessed that she's spent the last two nights at the hospital. Spencer's blood counts are all back up to within normal ranges today, too, which is a very good thing. He is still in the hospital, but doing better every day. He has been playing with Grandma today while Mom and Dad breathe the free air. We're still low on sleep, but feeling refreshed after a few hours outside the hospital room.

It was looking pretty grim last night, though. Shauna, Spencer, Sophie, and I (Mike) were all in the same room together, right? Right. And that's a good thing, right? Well, that depends on whether anybody wants to sleep at all. :) By about 9:00 PM we were starting to panic because all four of us were exhausted and sleep was nowhere in sight. Sophie was just not able to settle down with all of the distractions of the hospital room and Spencer was annoyed that she was making so much noise. I finally called in Sophie's nurse, who had helped us get into the same room in the first place and explained the problem. I felt bad asking for her help because she had already done us a big favor by getting us into the shared room (it seemed like a good idea at the time), and now we were asking her to "fix" it. But she and her supervisor were very gracious and more than willing to accomodate us (again). It was still not a particularly restful night, but so much better than it could have been.

Actually, I should back up -- Sophie and Shauna were not even originally supposed to be anywhere near Spencer and me -- they were assigned to stay at Brackenridge Hospital, which is adjacent to the Children's Hospital (about a 10-15 minute walk away). When the nursing staff in Spencer's unit found out about our situation, they made arrangements for Shauna and Sophie to be transferred over to be near us. They take very good care of us.

It is the small blessings that turn such an awful experience like this into something that we can bear with patience and faith. I could share many more examples of the acts of kindness and service that we have recieved over the last few weeks that have done just that. And we have had many more offers to help out than we could possibly accept. I was telling Shauna today that if we took every babysitting offer we got, we'd never see our kids! It's an evidence of the great caliber of friends and family that we have.

I couldn't help but remember Mosiah 24:15 -- "And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord."

We know that we have been strengthened and our burdens made light, and that it is in large part due to the many prayers that have been said on our behalf. Thank you.

-Mike

Sunday, February 1, 2004 3:29 PM CST

Spencer (admitted to the Hospital on Thursday) tested positive for RSV (Respiratory Syncytial Virus) and also for Rotavirus (a stomach virus). Sophie has also been very sick and was also admitted to the hospital yesterday for dehydration. She also tested positive for RSV and Rotavirus. The hospital staff kindly arranged for Shauna and Sophie to be in a room next door to Spencer and me, and then this morning they moved us into a double-occupancy room. At least we can all be together, right? (!!!!) Annie is staying with some friends and Shauna's mom is flying in tonight to help out.

They are both doing better today, but will probably stay in the hospital at least until tomorrow. After having been on oxygen support for the last couple of days, Spencer is doing well on his own. His blood counts are also on the rise and are no longer in the "critically low" category. He will probably go home tomorrow after he receives another dose of Vincristine, which does not affect blood counts.

Sophie gained a whole pound last night after getting fluids via IV and nursing a lot. She was sick again this morning but has been doing pretty well for the most part. She was so lethargic yesterday and refused to eat, but has perked up considerably and is nursing and eating again. She may (?) also be able to go home tomorrow.

Being in the same room is nice, but I'm not sure how well it will work tonight with two different nurses (one for Spencer and one for Sophie) coming in every four hours to check vitals. We'll definitely have to get the nurses to synchronize their schedules so they come in at the same time.

Spencer's hair started to fall out last night. I was trying to keep him calm by running my fingers through his hair while his nurse checked his vitals. When I pulled my hand back, his hair was all over it. We combed through it this morning to get the rest of the loose stuff out so that it didn't get all over his face and his pillow, and it's pretty thin now. He couldn't care less that his hair is falling out, but his mom and dad are sorry to see it go.

Shauna and I are pretty tired, but otherwise OK. When we met up at the hospital yesterday after Sophie was admitted, it was hard not to laugh at the absurdity of it all. We have lots of family and friends praying for Spencer and for our us. Even strangers who have heard about Spencer's cancer second- or third-hand have expressed support and love. The Lord has a plan for us all, and even though this part of the Joneses' plan seems to be a little heavy on the sickness and afflictions, we trust that it will all work out for the best in the long run.

Love to you all.

-Mike

Friday, January 30, 2004 6:03 PM CST

I (Shauna) took Spencer in for a blood count check yesterday--and a chest x-ray, a four-hour red blood cell transfusion, an hour of iv fluids, 20 minutes of nupagen (to boost white blood cells), 15 minutes of antibiotic, Monsters Inc. and Finding Nemo later, they admitted him into the hospital with a 102 degree fever. They did breathing treatments through the night. Today he has been seen by his oncologist, a pulmonary specialist, and a respiratory specialist. The pulmonary specialist thinks he has RSV. They talked about putting him in Intensive Care, but ended up not. . .yet. He has an oxygen tube in his nose (he LOVES that) and an oxygen monitor on his foot. His oxygen and heart rate has been dipping down all day. He is really uncomfortable and keeps saying "ow, ow, ow" over and over. His eyes are swollen and he's pale. It's been a hard day for him.

Sophie is still really sick and vomiting and now she has a nasty cough which is probably the same RSV that Spencer has, so we need to keep an eye on her, too. We are tired, but we are hanging in there. We appreciate everyone's prayers and ask that you especially pray that Spencer will be able to get over this respiratory infection soon.

Shauna

Wednesday, January 28, 2004 11:14 AM CST

Shauna here. Well, our luck seems to be holding. Sophie started vomiting in the night and has continued every few minutes up to the present. I don't know WHERE she got a stomach bug, but we are praying that Spencer doesn't get it. He's throwing up enough on his own. So, my morning included being thrown up on by Sophie, changing my clothes and washing my hands good, giving Spencer all of his medicines, being thrown up on by Spencer, changing my clothes and washing my hands, being thrown up on by Sophie--well, you get the picture. And it's not even noon. It's times like these when you really just have to laugh at how miserable your life is so that you don't start crying. I keep reminding myself of a story my mom likes to tell where all four of her girls had the stomach flu at the same time and she changed and washed every sheet of every bed in the entire house in the middle of one night at least once. So, at least I can take comfort in the fact that I'm not the first, or the last, mom to have days like this.

A social worker from Candlelighters (a support group for families with a child with cancer) came yesterday to visit. She said something that made me feel a lot better about all of Spencer's sickness and suffering. She said, "You are lucky that he is little enough that he is not going to remember this. He'll remember that he had cancer maybe, but he won't remember all the treatments and vomiting and transfusions. His parents will remember every agonizing detail, but he won't." That gives me comfort on days like this.

We continue to recieve packages and cards and meals and phone calls and prayers and that also buoys us up during the discouraging moments. Thank you everyone. We love you all for your faith and prayers on Spencer's behalf. It means more to us than we can say.

Shauna

Tuesday, January 27, 2004 10:12 PM CST

Today I had to poke my own son with a needle. And I've got to do it again every day for the next four days. Fortunately for all for us, it wasn't a very big needle and I don't think it hurt very much -- he didn't really cry, just kind of whimpered a bit. A home health nurse came to our house to deliver the syringes (the shot is to boost his white blood cell count) and to show us how to do it. Hopefully the shots will do their magic and his counts will all be better by Thursday when we take him in again.

He is still not eating on his own, but I think most of the time he's too tired to fight much if we're persistent. He did a little better with food today, but still needs to eat and drink more. I was changing his diaper today and noticed how much thinner his little legs are compared to a couple of weeks ago. He got sick again tonight, just before bedtime. It's nearly impossible to tell whether he's feeling nausea or pain or other discomfort because he still has such a limited vocabulary -- we often don't know he's feeling sick until it's too late.

There are some rare moments where he perks up for a few minutes at a time, most noticeably on our way out of the doctor's office. Yesterday we spent six hours there -- most of which was watching movies while he received fluids -- and he hadn't said a word to anybody except to scold his nurse whenever she came near him. But on the way out, I said, "OK, let's go! Say 'Bye-bye,'" and he turned and shouted "Bye!" with a wave to everybody in the lobby. He said "bye" to the janitor on our way to the elevators, too. Pretty cute.

The cough syrup that we picked up yesterday seems to keep his cough under control, and we can give him Zofran for the nausea. We also have three different anitbiotics that he takes twice a day, plus the dreaded shots for the next few days. He's getting a little better about dealing with all the meds, and the poking and prodding from the oncology staff, but I think it's more out of resignation and weariness than actual acceptance.

No new pictures today -- maybe tomorrow. Goodnight all.

-Mike

Monday, January 26, 2004 9:37 PM CST

Spencer has had a rough day today. After what looked like a promising breakfast yesterday (some pudding and a cup of milk), he refused to eat or drink much of anything for the rest of the day. His cough is also getting worse and the over-the-counter cough suppressants haven't been much help.

I (Mike) took him in today to the oncologist's office for his second dose of vincristine (chemo). I told Dr. Sharp about his appetite problems and his cough. He asked if I could stay for an extra four hours while Spencer got some fluids through his central line, and he prescribed a cough syrup (phenergan with codeine) for nighttime to help Spencer sleep.

They also checked his blood counts. His white blood cell count (WBC) was nearly non-existent. It measured at 0.2 (I forget what the units are). Normal is 3.0. Anything below 0.5 is considered to be severely deficient. So we have to be very careful about illness, infection, fever, etc. We also have to give him a daily shot in the leg. I don't remember what it is exactly, but it's supposed to help or compensate for his low WBC. The nurse showed me how to give the shot and tomorrow a home health nurse will show us again, then we (and by "we" I mean "me" -- I don't think Shauna will be able to stick her son with a needle!) will have to administer the shot ourselves. Dr. Sharp said we could come into the office to have it done there everyday, but that's not really feasible. We'll go back in on Thursday to have him checked again.

When we got home, I had to force-feed him a few bites of applesauce and some yogurt. He doesn't seem to want to chew anything -- even what used to be favorite foods (pop tarts, goldfish crackers, fruit snacks, etc). It's hard to see him this way. Then, worst of all (WARNING: Vomit Story in Progress), I accidentally put him to bed without giving him his meds, so Shauna woke him up to give them to him and he threw all them back up. And because he just had his chemo, all his bodily fluids are toxic, so we had to frantically put on our rubber gloves and get him cleaned up before it irritated his skin or got on the carpet or whatever. It's really a ridiculous way to cure a disease--pumping the body full of indiscriminant toxins until the disease (hopefully) is killed off but (hopefully) before the body is damaged too severely. I'm sure there must be a better way, but unfortunately this is what current medical technology has to offer us, and there's no alternative.

I don't mean to be negative, but I do want this to be an accurate account since Spencer will want to read about it someday. Shauna and I both know that we need to stay positive in spite of setbacks and difficulties. There is neither time nor energy to waste on negativity. In spite of what I said about the harshness of chemotherapy, we are very grateful for the tremendous advances in cancer treatment that have been made in recent decades. If I'd been diagnosed with cancer when I was two years old, I would have had about a 5 percent chance of successful treatment. Also, several former chemo patients have told us that the first round is the hardest, so we are hopeful that Spencer's subsequent treatments will not affect him so severely. And we know that we have many, many people praying for Spencer and for us, and we know that there is a lot of power in that.

That's all for tonight -- more tomorrow. We hope that it will be a better day for him. Besides the threat of infection, our main concern right now is his appetite. He's go to start eating again or we're going to end up in the hospital again.

As always, thank you for all the prayers and thoughtfulness. It means a lot to us, and it makes a difference.

-Mike

Sunday, January 25, 2004 2:01 PM CST

It's been a good day so far. Spencer is still coughing, but his fever has remained below 100, and he ate a few bites of pudding and drank a half cup of milk this morning. He had a few bites of a tortilla for lunch. I can tell that he is feeling more energetic. He's still not running around, but he's talking more and seems to be feeling okay (not in pain). It's a beautiful day here. It's 72 degrees outside right now, and so we all went on a family walk. I think the sunshine and fresh air did us all good. We are feeling positive today. Hopefully Spencer will continue to eat and get his strength back. Because there are so many children with suppressed immune systems at the oncologist's office, they ask that any family member who is sick not come, and since I'm still sick, Mike will take Spencer to get his vincristine treatment tomorrow.

Shauna

Saturday, January 24, 2004 9:37 AM CST

Spencer and I (Shauna) are sick. We have developed a cold/cough, which is a worry. He is on antibiotic to try to prevent any bacterial infections that may develop, and I am washing my hands and sanitizing things as much as possible, but his immune system is only going to go down from here for the next few weeks, so please keep him in your prayers.

He isn't eating very well, either. I don't think food tastes the same to him on chemo, so he'll take a few bites of something, and then be done. We are trying to sneak calories in everywhere that we can, but it is really frustrating for all of us.

We will go in on Monday for another blood count and for his vincristine treatment. We just get to wait out the weekend and hope that his illness doesn't get worse. Thanks for your prayers and kindness and for the well wishes in the guest book on this site. We really appreciate everyone's concern.

Shauna

Friday, January 23, 2004 1:04 PM CST

Spencer's blood counts were good this morning, so he doesn't need a transfusion! He had a really good night last night--slept through the night without waking at all. He was pretty excited to go bye-bye with us this morning until he realized that we were back at the hospital we had just left. Then he was MAAAAD! They have a really fun treatment room there with a big fish tank in the middle of the room and toys everywhere. Kids can hang out and play while they receive their chemo treatments. Spencer was not about to get out of his stroller, though. I think he thought that as long as he stayed in there, we could still leave. They gave him an antibiotic in his iv for his cough. While we waited for that, a volunteer for the hospital brought her BIG dog around to visit the children. Spencer loved watching Baxter the dog and they took a polaroid of Baxter for Spencer to take home. (I'm going to put it on the photo page). All in all, the visit went tolerably well, and we're glad that we get to skip the transfusion for now.

Spencer is up watching 101 Dalmations right now. We are trying to enjoy this short time in between the nausea of the chemo and the lethargy of the low blood counts. He still isn't as peppy as usual, but he is seeming more like himself, which is wonderful.

Shauna

Thursday, January 22, 2004 11:18 PM CST

Spencer is doing very well at home today. He was very grouchy last night and this morning, but started settling back into his normal routine by about lunchtime today. I think that the steroid (decadron) that he received prior to discharge from the hospital had a lot to do with his mood. The nurse said "it might make him irritable." She wasn't kidding! But he is pretty much back to his old Spencer-self, with a bit less energy than he had before. He has a slight cough that we really hope is just after effects from the anesthesia, because his blood counts won't bottom out for another week and a half. Not a good thing if he starts out with a cough.

Sophie and Annie are both feeling better today. Sophie is on antibiotics and Annie seems to be done with the stomach virus. They are both happy to have Spencer back home. Sophie shows her happiness by mauling Spencer while he tries to rest. Annie keeps saying, "I'm so glad that Spencer is feeling better." We've talked about cancer with her several times, but the magnitude of it still eludes her.

Today was also my first day back at work. That was good and not so good. It was nice to have a taste of normal life again, but hard to get back into the grind. I have a co-worker that has an 8-year-old boy that was diagnosed with Stage 1 Rhabdomysarcoma in December, and he came by to talk, which was nice. "Rhabdo" is pretty rare, making up just 3% of all childhood cancer diagnoses each year, so it's uncanny that there are two boys living so close and diagnosed at almost the same time. However, according to the information I've read, there are no known environmental causes.

Tomorrow Spencer goes in for a checkup and some blood work at Dr. Sharp's office. He will not return to his pediatrician until sometime after his treatment is complete. We'll need to take him back to Dr. Sharp's office on Monday for the next dose of Vincristine (one of the chemo drugs). He may also need a blood transfusion then, depending on what his counts read tomorrow.

That's all for tonight. Maybe I'll post some more pictures tomorrow.

-Mike

Wednesday, January 21, 2004 3:26 PM CST

Spencer is HOME! He is in the backyard swinging as I type. His blood counts won't go down for a few days, so we are trying to let him be outside as much as possible until then. He is pretty happy to be home. He even ate some chicken nuggets and a frosty upon arrival home. He is cranky, but I think the nausea is gone. He had to take a steroid to help increase his appetite, which has the side effect of mood swings (just what a 2 year old needs, right?), so his mood is not the best, but we are just so happy to have him home, we don't even mind that much.

He goes back in on Friday--but just to the oncologist's office. His hemoglobin count was okay, but a little low, so they will check him on Friday, and if it is below 9, they will schedule a transfusion for Monday. If it is below 7, which is unlikely, they will do one immediately. Monday is his scheduled vinchristine treatment, which is the chemo drug that is given weekly.

On another note, our family is having some serious bad luck. Last night, Sophie was congested and fussing and so I was up with her all night. At around 2:00 am I gave her some decongestant and was up watching "Finding Nemo" with her. I heard Annie moaning in my bedroom where she was sleeping with Grandma Jones. I went in to find that she had vomited twice on the way to the toilet. All over my bathroom linoleum. So, I was in trying to wipe her up when I heard a swoosh. I peaked around the corner of the bathroom to see that Sophie had crawled in after me, slipped in Annie's vomit, and was covered in it--all through her hair, on her face, all over her pajamas. She looked up with a stunned look on her face like "What just happened." It was so miserable I just had to laugh. So, I bathed Sophie while Grandma Jones wiped up Annie's vomit (that's true grandmotherly love right there!) and then both adults had to change our clothes because it had of course gotten all over us in the process. We finally went back to bed around 3:00. So, Sophie went to the doctor this morning and has the beginnings of an ear infection and is now on antibiotic, and Annie has what we suspect to be the roto virus, which is a nasty flu that's going around (probably the same bug that Spencer had last week). Our life isn't dull, that's for sure.

Despite everything that has happened this week, we are feeling very blessed and happy to have Spencie home. We will pray that he doesn't catch what his sisters have and that his blood count will stay as high as possible. We continue to feel your prayers and thoughts and we appreciate all of you!

-Shauna

I (Mike) will add my two bits. We are *very* relieved and happy to be home. Spencer was ready to go AWOL at the hospital. He is tired and a little wobbly on his feet, and as Shauna said, a bit irritable, too. But things seem much more manageable now that we are all home and can be together as a family. I took some pictures of him eating his chicken nuggets and falling asleep outside in the swing that I will try to post today. The site only allows us to post 3 pictures at a time, so the others will be replaced.

I echo Shauna's gratitude to all of you for everything: thoughts, prayers, phone calls, emails, cards, meals, visits, cleaning, baby-sitting, etc, etc, etc. We are blessed to have such a reliable and extensive support system of family and friends and ward members. Thank you.

-Mike

Tuesday, January 20, 2004 11:30 PM CST

Today was rough. Spencer was sick and nauseated most of the day. His stomach was empty, but he kept gagging. He slept a good portion of the day, but every few minutes would cry in his sleep. He acted like he was in pain all day. We couldn't figure out what was hurting him until tonight, his diaper area was really sore. The chemicals that passed through in his urine burned his skin. Mike is there with him tonight and he said that he put diaper ointment on him and it seemed to help his discomfort. It was really hard to see him feeling so sick. He is still scheduled to come home tomorrow, but there is a chance they will keep him until he eats on his own. He hasn't really eaten since he went in almost a week ago, he has been getting his nutrition through an IV. But, we're hoping that Dr. Sharp will allow him to come home. We think that he will eat better in the comfort and security of his own home.

Tonight some ladies from our church ward came over and totally sanitized the house. I came home and it looked amazing. They cleaned all of the toys, books, door knobs, chairs, tables, etc. It was so sweet and such a big job. The kindness that everyone has shown us is just unbelievable. The house cleaning tonight is just one example of the overwhelming outpouring of love and support that we have received. We are feeling exhausted and weary, but at the same time we really have felt peace about everything. It will be good to have Spencer home with us tomorrow.

Shauna

Monday, January 19, 2004 7:58 PM CST

Spencer had the bone scan today, as well as a bone marrow aspiration and biopsy. The procedure was done using a needle to extract marrow from each hip. Dr. Sharp (Spencer's oncologist, who we really like, by the way) said that he may be a little sore, but should not really even need any pain medication. The short version of the scan results are that the cancer has not spread to bones (or elsewhere). The long version is that they found a tiny spot of "something" in his spine, and another tiny "something" in one lung, but they are not necessarily cancer and not large enough to be a concern. So the official diagnosis is Stage 3 Rhabdomyosarcoma in the form of a "pelvic mass." The mass is 11cm X 9cm X 6cm, which is surprisingly large to us. When his tummy and bowels are empty it's visible as a large hump just below his belly button. He will start his first chemo treatment tonight and hopefully come home early Wednesday. Dr. Sharp said that the nausea drugs are very good and he may not even feel sick if we are lucky. The chemo treatment plan will proceed as Shauna outlined in her entry last night.

Shauna is with him now, and I will go back with him tonight. I have been taking night duty at the hospital so that Shauna can be with Sophie (10 months), who is still nursing quite a bit and is also teething. Spencer is doing fine since the procedure, and likes to go for long walks down the halls of the hospital. There is also a playroom down the hall that he likes a lot. He is quite a bit peppier today and yesterday, and is walking more now (rather than riding in his stroller). He's definitely not overly fond of his hospital bed.

He is getting used to the nurses coming in to take temperature and blood pressure every 4 hours, though he still lets them know that he doesn't like it. He's also starting to eat more again, which is good. He started out with a stomach virus last Wednesday, and hasn't had much of an appetite since then. He's been getting nutrition through his IV since Friday to make up for it.

Thanks to all for your faith, prayers, and kind sentiments. We love you all.

-Mike

Sunday, January 18, 2004 7:47 PM CST

Tomorrow morning (Monday) at 9:00 am, Spencthat passed through in his urine burned his skin. Mike is there with him tonight and he said that he put diaper ointment on him and it seemed to help his discomfort. It was really hard to see him feeling so sick. He is still scheduled to come home tomorrow, but there is a chance they will keep him until he eats on his own. He hasn't really eaten since he went in almost a week ago, he has been getting his nutrition through an IV. But, we're hoping that Dr. Sharp will allow him to come home. We think that he will eat better in the comfort and security of his own home.

Tonight some ladies from our church ward came over and totally sanitized the house. I came home and it looked amazing. They cleaned all of the toys, books, door knobs, chairs, tables, etc. It was so sweet and such a big job. The kindness that everyone has shown us is just unbelievable. The house cleaning tonight is just one example of the overwhelming outpouring of love and support that we have received. We are feeling exhausted and weary, but at the same time we really have felt peace about everything. It will be good to have Spencer home with us tomorrow.

Shauna

Monday, January 19, 2004 7:58 PM CST

Spencer had the bone scan today, as well as a bone marrow aspiration and biopsy. The procedure was done using a needle to extract marrow from each hip. Dr. Sharp (Spencer's oncologist, who we really like, by the way) said that he may be a little sore, but should not really even need any pain medication. The short version of the scan results are that the cancer has not spread to bones (or elsewhere). The long version is that they found a tiny spot of "something" in his spine, and another tiny "something" in one lung, but they are not necessarily cancer and not large enough to be a concern. So the official diagnosis is Stage 3 Rhabdomyosarcoma in the form of a "pelvic mass." The mass is 11cm X 9cm X 6cm, which is surprisingly large to us. When his tummy and bowels are empty it's visible as a large hump just below his belly button. He will start his first chemo treatment tonight and hopefully come home early Wednesday. Dr. Sharp said that the nausea drugs are very good and he may not even feel sick if we are lucky. The chemo treatment plan will proceed as Shauna outlined in her entry last night.

Shauna is with him now, and I will go back with him tonight. I have been taking night duty at the hospital so that Shauna can be with Sophie (10 months), who is still nursing quite a bit and is also teething. Spencer is doing fine since the procedure, and likes to go for long walks down the halls of the hospital. There is also a playroom down the hall that he likes a lot. He is quite a bit peppier today and yesterday, and is walking more now (rather than riding in his stroller). He's definitely not overly fond of his hospital bed.

He is getting used to the nurses coming in to take temperature and blood pressure every 4 hours, though he still lets them know that he doesn't like it. He's also starting to eat more again, which is good. He started out with a stomach virus last Wednesday, and hasn't had much of an appetite since then. He's been getting nutrition through his IV since Friday to make up for it.

Thanks to all for your faith, prayers, and kind sentiments. We love you all.

-Mike

Sunday, January 18, 2004 7:47 PM CST

Tomorrow morning (Monday) at 9:00 am, Spencer will have a bone scan and a bone marrow aspiration to see if the cancer is in his bones. He will start chemotherapy tomorrow evening. Right now, assuming that the cancer is not in his bones, the plan is 12 weeks of chemo to shrink the tumor down, then surgery to remove whatever is left of the tumor, then a round of radiation, followed by another round of chemo. 42 weeks if everything goes according to plan and he responds well to the treatment. Also assuming that the cancer isn't in his bones, his first chemo treatment should be done by Tuesday night and he should be able to come home on Wednesday.

We are all tired and still in shock, I think, but Spencer has had a good day today, playing on his bed and going for walks in the stroller. Mike was with him last night and all day today and is staying with him tonight again, too. I (Shauna) spent the day with Annie and Sophie and went to church. I will go up first thing in the morning to spend the day with Mike and Spencer. We are just taking everything one day at a time.

We appreciate everyone's prayers and fasting and love and support. We have truly felt lifted up by your prayers and the spirit. Thank you for everything. We will try to keep this journal as up to date as possible so that you don't have to wonder, and we don't have to try to remember who we have told what.

I guess that's all for now. I'll try to write more later.

Shauna

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