Category Archives: brother Jake

The Magic of Being Special

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May 13, 2010

John suggested two titles for my post today:

1) Is there anything a Superhero cannot fix?
2) Have you ever been put to bed by a six-foot rabbit?

It’s a good day when you can come up with two humdingers like that!

We started out this morning tired… very tired. Jake was coughing… a lot. And, Tanner was definitely not her peppy self. We decided we would just go to Universal, stay for a couple of hours and come home. When we got there, we discovered that Universal is no Disney World. You walk a long way to get into the park and the workers didn’t seem nearly as kind or customer service oriented. The kids were comatose, just going through the motions.

Then, as we were walking through Super Hero Island, some loud music came blaring out of the speakers and Superheros came riding down the street on three-wheelers. Jake and Tanner were mesmerized and we got in line, immediately, to get autographs and pictures. No heading to the front of the line here, we just waited with everyone else, hot and tired… bummer.

Then, Captain America noticed Tanner’s button and asked her a few questions and pointed her in the direction of… Andy… the true Superhero of the day. Andy pulled us aside and escorted us to a quiet, shaded spot where after about five minutes, we were treated to our own private superhero meet and greet!!!! Hurray! We were special again and the kids were enthralled. The Superheros were so kind to the kids and spent so much time with them. We will be forever grateful.

That moment turned the day around. Everyone perked up, we spent some quality time with the Dr. Suess characters as well, rode some rides, saw a Sinbad show, ate a little lunch and headed home in time for naps.

After dinner, the Village turned into Winter Wonderland! There were Christmas decorations everywhere, horse and carriage rides, Santa Claus, a Christmas parade and even snow from a snow machine. Unbelievable! Tanner and her new friend Maddy, raced around dancing with the parade characters and decorated some Christmas cookies while Jake and I chased a reindeer around and played in the fake snow.

We hustled the kids home for bed, who were indignant that we cut the party a little short for them. But, we had a special surprise… Ms. Merry, the wife of the Mayor Clayton of Give Kids the World Village (and a six-foot rabbit) came to tuck the kids in and put them to bed. They were enchanted. She led them to bed, pulled up the covers, checked under the bed for monsters and turned out the lights. Of course, after she left, John and I spent a good half-hour trying to get them calm enough to go to sleep!

Here’s the thing about being here. It’s not just the amusement parks or this amazingly fun village or anything else that there is to do here. It’s how special the kids feel. How after so many months of sacrifice, disappointment and pain, they feel magically, wonderfully special. That is the magic of this trip and we will be forever grateful to all the volunteers and employees of Make-A-Wish, Give Kids the World Village and the theme parks for making our kids have one shining, magical week in the midst of this hardship.

Love,
Beth

HUGE Day!!!

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May 12, 2010

Wow! Three little letters to cover such a big, big day! We started with pony rides and complementary cowboy hats and ended with dancing, swimming and a magic show by the Village pool and splash park.

The day started kind of shaky. We went to pony rides and then Tanner said she had to go to the bathroom and threw up while we were in there. I was sure she was developing some kind of stomach virus and that our trip was officially over, but we headed back to the Villa to wait it out and see how she did. It’s not unheard of for Tanner to be sick from chemo and the concoction of other drugs she takes, but it’s not common either. Fortunately, that seemed to be the case, and 45 minutes later, we were on our way to Disney Hollywood.

Awesome stunt from the car and motorcycle show

We met up with Meredith and her parents, Bo and Sara, at Disney Hollywood and had a ball. Jake was in heaven. First, we got to meet some Power Rangers, then the kids got their faces painted and Jake looked like Flash Gordon, then we saw the car and motorcycle stunt show! Race cars, motorcycles and fire!!! Woo hoo! Every boy’s dream.

... and Jake's reaction to the awesome car stunt!!!

Tanner and Meredith had a ball, too. They got to see a High School Musical show and were chosen to dance with the dancers in the parade.

Beauties and the Beast

Again, we were treated like royalty. The fun thing today, though, was that Jake thought it was him that was getting us in to all the rides and shows first. One worker made a mistake and directed all her attention to him instead of Tanner and we all let him have his shining moment. He has also started showing his Wish Button at the entrance gate to the Village and saying, “I got you guys in!” with a huge grin on his little face. In reality, Tanner has the special Wish button that gets us everything, but we’re all wearing smaller wish buttons and we all have special stickers for the Disney Parks that let the workers know we’re with a Wish Kid. It’s amazing how kind they all are. They even let Meredith and her family come to the front of the line with us.

Tanner is feeling better today and coughing much less. I think we’re coming to the end of the virus, so maybe John and I will be able to relax and enjoy ourselves a little more. It’s been pretty unnerving to figure out how far to let her go and how much rest to force. Every time she would have a big coughing spasm, we would give each other a knowing look… the one that says, “This could be bad.”

Tanner and Meredith busting a move in the parade

Spending the day with Meredith let me know how much less stamina Tanner has than a normal kid. There was a parade at Disney Hollywood this afternoon and John and Bo went to get food for us all while the kids and Sara and I claimed a spot to watch the parade. It was hot sitting on the sidewalk and by the time the food came, no one really wanted it too much. When the parade ended, Tanner came to me crying and said she wanted to go home. We carried her (and Jake, who had not had a nap) back to the car. I think the heat really affected her, because after a rest and some food in the cool air conditioning in the Villa, she was ready to go again. But, Meredith and her family stayed at the park, I assume for hours.

We ended the day with a swim in the awesome pool and splash park at the Village. We ate dinner by the pool and then there was a pool party. Sponge Bob was there and Tanner danced and danced, while Jake swam and swam. We came home tired and ready for a good night’s rest.

We’re off to Universal Studios tomorrow. Home of Spiderman (need I say more?), Dr. Seuss and Shrek. Lots of shows and rides. Tomorrow night is Winter Wonderland at the Village… Santa Claus!!!

Love,
Beth

The Magic in the Magic Kingdom

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May 11, 2010

Walt Disney, I could kiss you… and all the wonderful people who work in your unbelievable wonderland of fun.

We started out the day in the Village with autographs and photos of Boots from Dora the Explorer, then made the trek to the Magic Kingdom for one awesome day. Tanner’s coughing is still bad, but still no fevers. She clearly didn’t feel herself this morning, though. She was determined to be there, but not her usual animated self. I began thinking we were losing the battle and was wondering what the children’s hospital here would be like. But, a visit with the princesses and fairies really perked her up and she actually seemed somewhat better this afternoon.

Can I just tell you what being able to go to the front of the line at Disney means to us? I know many of you who have been to Disney are salivating at that concept, but I finally fully understood today why this privilege is extended to Wish kids. It’s not just because they deserve it (which they, of course, do), but because most could not do Disney without it. We were able to ride and do probably four times the amount of stuff today than we would have if we had to wait. And, Tanner wouldn’t have lasted otherwise. Just standing in the lines is too much for her over time. By skipping the lines, we spend most of our time sitting on rides and riding in the stroller and she is able to last long enough for us to have a good time. It’s essential… and really cool!

Jake experiencing the wonder of It's a Small World

She gets the total royal treatment. When we went to see the princesses, we were escorted by the nicest lady, through the exit line into the princess room where the princesses spent tons of time doting on my girl. They had real conversations and Tanner was fully wrapped in magic. Jake, on the other hand, wanted nothing to do with those princesses, but was pretty smitten with Tinkerbell. After the princesses, the lady took us next door to see the fairies, too. Wow! Talk about feeling special.

We left at just the right time, before everyone was completely exhausted, and after some rest, went to dinner in the Village. Tanner and Jake got to make pillows with a pillow machine and we found Tanner’s star, which she decorated last night, mysteriously placed on the ceiling overnight by the star fairy. There are thousands of gold stars on the ceiling of the Castle of Miracles in the Village… both and inspiring and a sobering sight. Makes you wonder why so many kids need to face life threatening illnesses.

We skipped Village Idol night (an American Idol spin-off) because Tanner was coughing non-stop and we wanted to get her in bed on time. Tanner will forever believe that event was canceled… she would never forgive us.

Her coughing appears to be a virus… one which Jake unfortunately seems to be catching. But, tomorrow marks seven days of coughing, so hopefully, we are on the down side of hers. If she had pneumonia or something else, she would have had a fever by now. They both had a virus like this over the winter, and it passed uneventfully.

So, tomorrow we’re starting with some pony rides in the Village. Then, it’s off to Disney Hollywood – High School Musical, Star Wars, Playhouse Disney, etc. We’re going with Tanner’s friend, Meredith, who happens to be here this week, too. Her Dad is being deployed soon, so this is a special trip for them, too, and we’re glad to be sharing tomorrow with them.

Feel the Magic!

Love,
Beth

A Whole Week

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March 19, 2010

Tanner made it. A full week of school. It seems so surreal, but at the same time, so normal. Normal, normal, normal, normal… I love the sound of that word. I’ve kind of forgotten how to do normal. I had the opportunity to do cool things with Jake this week and couldn’t remember what to do. We did go to playgroup today for the first time in more than nine months. He got to play with a whole group of kids his own age… priceless.

Tanner’s teacher said she did great this week. She isn’t behind at all academically and she said she was astounded by Tanner’s stamina. When she gets tired, she lies down in a beanbag chair in the classroom for a rest, but has mostly seemed like any other energetic first grader. Many thanks to Mrs. Franklin for taking such good care of her this week and to Mrs. O’Hara for preparing her so well for returning to school. Because of her expert tutoring, Tanner has been able to keep up with her peers.

I’m so scared to really enjoy the moment, though. So afraid it won’t be long before she is disappointed again. Scared that the recent increase in chemo to 75% dosage might have tanked her counts and we’re sending her to school with no immune system. Scared Tanner is pushing herself too hard and will get fatigued and get sick. Scared, scared, scared. I hate living like that. It’s one of the not-so-great side effects of this journey.

Beth and I sat out on the deck today and ate lunch while watching the birds and the squirrels playing around the creek. So much nicer than looking at a fence. It’s peaceful here and that’s something I’m trying to remember to take time to enjoy.

Played in our old neighborhood today. Jake and I parked there and walked over to the school to pick Tanner up. We brought scooters and just stayed to play with our friends. It was good medicine for Tanner to see how easy it was to still play with Corinne. She has been so anxious about that.

More unpacking and curtain hanging on tap for the weekend. And rest for Tanner. Recover from this week and gear up for the next. I’m not so naïve as to think there won’t be bumps in the road, but I’m really hoping for a smooth ride for a little while. Tanner needs it.

Love,
Beth

Recovering Slowly

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March 4, 2010

We got to come home at about 4:30 Tuesday after her transfusion was finished. She felt pretty awful and was coughing almost constantly. We doped her up pretty good that night and she actually slept really well and seemed a lot better yesterday morning. Her fever stayed around until the late afternoon, but finally went away. Her chest was incredibly sore from coughing so much and she cried every time she coughed all day long. Oxycodone is a wonderful thing, but apparently can’t completely fix that kind of sore muscle.
Yesterday was John’s birthday, ending the annual 6-month period where he gets to make fun of me for being older than him. The kids made cards and Tanner got him a Starbucks gift card so they could go together – she for hot chocolate and him for coffee. Jake wrapped one of his race cars, “a gween one” for him and I gave him…. Granite in our new kitchen ☺ We had brownies and ice cream, but frankly, he got kind of gypped out of a birthday since nobody is all that celebratory right now.

Tanner’s still coughing quite a bit this morning. Thankfully, Jake has school today. He is losing it hanging around here without his playmate up to par. School will offer some much needed exercise. Thank you Ms. Julie for giving him some normalcy twice a week.

In between the nursing duties, I’m still packing. Moving day is just 9 days away. As stressful as moving is, at least it is something else to think about and something with an exciting and new aspect to it.

Counting on the IgG transfusion Tanner had to turn things around for us. Hope it delivers… for all of our sakes.

Love,
Beth

Steroids and Playdates

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February 27, 2010

Our new-found freedom has been a little limited by the fact that Jake was sick and I didn’t want to share his germs with anyone else and Tanner being on steroids again.

Jake’s fever broke sometime in the night on Thursday and he is feeling better, though still coughing. Tanner is coughing some and complaining of a sore throat, but it’s difficult to tell what is the steroids and what is her actually not feeling well. She’s handling the steroids very well. She’s been tired (took a 2-hour nap on Friday) and asked to go to bed at 6:30 tonight. That’s pretty typical of steroid week, though.

Although we’ve got this new freedom, we have our eye on the prize and are still being somewhat cautious. School in two weeks, if her counts can stay up. There’s not really anything you can do to affect counts, but getting sick certainly doesn’t help. So, I’m carefully controlling who she sees so we can try to make it the next two weeks without catching anything. She seems more susceptible to getting sick during steroid week – or at least that’s my non-medical opinion.

The kids went to Aunt Beth and Uncle Glenn’s this morning to play and give John and I a chance to get some things done at the new house. Awesome! They had a great time, as always, but Tanner had fallen asleep on the couch while watching a movie and we had to wake her to go home. She rested when we got home and had a much-anticipated playdate with Corinne this afternoon. She was wiped out by 6:30 and ready for bed.

John and I got to spend some time cleaning the construction dust out of the new house and putting together some shelves we bought for the kids’ rooms. The renovations are going well and on target for us to move in two weeks… yikes! So, I suspect we will do lots of packing tomorrow!

Love,
Beth

Clinic Day #28

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Ahhhh… Good Counts

February 24, 2010

Yay! Tanner’s counts were 3,100!!!! Hallelujah! Now, maybe they’re high enough to fight off the virus that Jake has which is causing fever and coughing.

John took Tanner to clinic today, while I took Jake to the pediatrician’s office. It can’t ever just be good news, huh? Jake has a virus and the trick will be keeping Tanner from getting it. Her counts are high enough that she might escape, but we will be extra vigilant for the next few days.

Spoke to John just a moment ago; Tanner was out of surgery for her spinal with methotrexate and was in the recovery room sleeping it off. They’ve planned on a run to Chili’s to pick up lunch. She hasn’t eaten since 2:30 am this morning; we woke her for peanut butter and jelly.

She will restart her oral chemo at 50% dosage and we return in two weeks for a counts check to see if her counts are still high. If they are, they will raise her chemo dosage to try to get her to stay within the 1-2,000 range they are looking for. If they have come down some, that may become her permanent dosage. It’s the Long Term Maintenance Dance where they try to find the correct dosage to suppress white counts enough, but not too much.

John and I laughed about my bad luck. I didn’t go to clinic with them, where normally, we have to hold down Tanner to get her “sleepy milk” for surgery. She gets very anxious about it and cries and begs me not to let them do it, even when she has Versed in her. But, this time, they had a new anesthesia team who hid the sleepy milk from her and gave it to her without her knowing. John said she drifted peacefully off to sleep with no crying.

I, on the other hand, got to take Jake to the pediatrician where I had to… you guessed it… hold Jake down while they did a strep test and nasal flu test. No escape from the screaming and crying and begging for me!

If Tanner’s counts are good at our two-week check, she’ll be able to return to school…. Hoping and praying.

Love,
Beth

Between a Rock and a Joyous Place

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February 20, 2010

It is an exceptionally difficult thing to make a decision that makes one of your children happy and hurts the other immeasurably. I started the day with regret and ended it with little bit more peace, but still not knowing whether we made the right decision or not.

Today was Jake’s birthday party, the party his sister could not attend. Tanner seemed okay with this decision a few days ago, but yesterday began having a hard time with it. As she watched me blow up balloons and helped me stuff goody bags, she struggled with how to express her anger while still supporting her little brother. She would have an outburst, then apologize and say she wanted Jake to have a good time. It is wrong to expect a six-year-old to handle the culmination of 9 months of deprivation with grace.

This morning, her teacher came to the house for a lesson and Tanner broke down during the session and sobbed on my shoulder. She was sad and frustrated and didn’t know how to show it appropriately. Then, she was embarrassed about the way she had acted in front of her teacher. Tough morning.

On the other hand, there was a sweet little boy who turned three and deserved a birthday party filled with the unfettered joy that occasion merits. It was a good party. Just a few good friends, some presents and cake. He loved it, but I think even he missed Tanner.

I would like to say John and I were as joyful as we wanted to be for his party. But, it was hard knowing Tanner was at home feeling so abandoned. Her E. and Papa came to stay with her (thank you, you have no idea how much that meant) at the house, but I know my highly social girl would have loved to be directing a game for Jake’s friends.

I feel bad knowing I might have put more into Jake’s party if I didn’t feel so conflicted. I don’t think he noticed, but I did. He had a good time and loved having his friends, eating cake and opening his presents.

The day actually ended better than we could have hoped. John’s brother Michael, his wife, Amanda and their son Mack came to the party and stayed afterward for some fun. E. and Papa brought Tanner over to the new house and we let the kids ride the new ATV and their scooters in the cul-de-sac. We called for pizza and had an impromptu picnic on the front lawn while the kids played. Tanner loved seeing Mack (they are the same age) and it helped a lot to be able to play outside with him even if they couldn’t touch each other. We all went home exhausted and laid on the sofa for the rest of the day.

Cancer infects so many parts of our lives that it never ceases to amaze me the situations I find us in… hard spots with no clear right decision. We did our best to make the right decision, but it costs, as always, in some way.

Love,
Beth

Hoping for Good Counts

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I did try to crop out the toilet in the background, but couldn't do it!

February 17, 2010

Tomorrow is counts day… please, please, please let them have gone up enough to at least allow playdates with friends. The kids have played with each other exclusively for 10 days now and it is, to say the least, getting old. I don’t dare hope for counts to be high enough for her to return to school, but it would be a great bonus!

We’ll go in first thing in the morning, so we could still get Jake to school if her counts are high enough for him to return. We need to bring cupcakes so his class can celebrate his birthday.

We had a great birthday celebration despite it just being the four of us on Monday. We ended up having a picnic in the basement of the new house with Chik-fil-A and a chocolate birthday cake with Star Wars guys on it. Jake was so excited about his battery powered Batman ATV. He didn’t even scream or make any kind of reaction when we showed it to him… he just made a beeline to it, with this crazed look on his face and drove off… priceless.

Been cleaning up the basement in preparation for Jake’s kid party on Saturday. We made the difficult decision to go ahead and have the party whether or not Tanner can attend. At first, she seemed very okay with this decision, but now that it might actually happen, is upset about it. I tried to explain that we just can’t keep postponing it… that he deserves to have his party. Hopefully, it won’t come to that.

Is it possible to move without ever packing anything? I’m trying. Every time I go over to the new house, we grab stuff as we leave the house and put it in big rubbermaid containers and unload it in the appropriate room when we get to the house. Pictures off the walls, vases, candles, accessories… you name it I have just grabbed it as I walk by. My goal is to not have to wrap anything in newspaper. Mostly, though, we’re in moving denial. We haven’t moved nearly enough and need to get in gear this weekend. Our moving date is just 3 weeks from this Friday. Yikes!

Cross your fingers and toes, knock on wood, throw salt over your shoulder, whatever you want, just wish us luck tomorrow. There’s only so much togetherness we can take.

Love,
Beth

Indoor Fun

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February 14, 2010

Tanner and Jake playing wii

How many ways can you have fun while stuck in your house and no visitors allowed? We’ve tried ‘em all… trust me… but have had lots of help from friends.

Thursday afternoon, our dear friend Anna Lynn, who is forever thinking of us, and is forever creative, brought Jake’s valentines from his class to us. He had missed his valentine’s party (and his Christmas party and his Thanksgiving party). His class made valentines for Tanner, too, so we had a lot of fun opening them. She also brought beautiful yellow tulips (that’s so Anna Lynn), valentines from our church staff and sugar cookies with a cookie decorating kit (from another dear friend). We were opening those valentines when I got a text from Tanner’s home teacher, Mrs. O’Hara saying there was a package on the doorstep. It was an early housewarming gift – pots with gardening gloves, tools, seeds and even dirt. How cute!

Friday, Corinne brought home Tanner’s valentines from her class… she LOVED them! There was one unsigned valentine and she’s still trying to figure out who her secret admirer is (I love this!). I opened the door to find another package from Mrs. Wood’s 4th grade class – they have been so super to Tanner – they sent valentines and birthday cards for Jake. So sweet.

We also had valentine packages from some of John’s co-workers and from all the grandparents. It has really helped alleviate the boredom. These days have been hard on all of us, but Tanner is especially frustrated. She had a small taste of freedom and then it was taken away so quickly. She is definitely feeling it.

We had a breath of fresh air Thursday and Friday from Aunt Beth. Beth is one of my two best friends and has been so unbelievably generous with her time. She is my savior when I need to balance the impossible – a child who can’t leave the house and a necessary task that requires me to leave home. Thursday afternoon, she came so John and I could meet with Tanner’s school. Then, she stayed overnight so I could take Jake first thing Friday morning to his annual kidney ultrasound. Jake was born with one kidney and has to be monitored. His one kidney is stellar! Tanner got to stay with Aunt Beth while Jake and I left for several hours and I think Beth must have been totally pretended out by the time she left!

The meeting with the school went great. They were so awesome and are doing anything and everything they can to make sure Tanner will be as safe as possible when she returns to school. She will have her own bathroom and her own computer to cut down on sharing germs. Together, the group of us that met developed a 504 plan. It is a legal document that spells out Tanner’s limitations, outlines what the school will do to accommodate them, and excuses her from normal absence rules, etc. She’s done so well here at home keeping up with her schoolwork, thanks to Mrs. O’Hara. She continually scores at or above grade level.

Thank God we have this new house to go “visit” when we are bored out of our minds and tired of looking at these same four walls. We go jump in the bouncy house and ride the little train and run around in the empty space to get out our ya yas! John went over there for several hours today to put together Jake’s new Batman battery powered ATV. We’ll give it to him tomorrow on his birthday… he will, to say the least, be beside himself. He loves anything to do with cars and motorcycles and asked to have a motorcycle birthday party. Beth and I painted a mural on the wall of his new bedroom with a road coming through a green hill and clouds in the sky. We’ll use the road as a headboard for his race-car bed and put his airplane shelves in the sky looking like a red plane flying out of the clouds (Thanks, Johnny). It has been a rough road for him, too, and he deserves an awesome room.

We all made valentines for each other today and had fun giving them to each other after dinner. The kids and I decorated the sugar cookies for John, but couldn’t eat them after all the valentines candy.

So, we’re stir crazy, but trying to make lemonade, if you know what I mean. Tomorrow is Jake’s birthday. I am sad that there is no one but us to celebrate his day. Usually, we invite family and maybe a few close friends for cake after dinner. He’s too little to really understand the big party is coming. We’re hoping Tanner’s counts will be high enough on Thursday to come to his party, but if not, will have it anyway. He needs to have his birthday… even Tanner said so.

Three years ago today, I was going to bed right about now, bags packed, knowing that I was getting up to head to the hospital to deliver a baby that threatened to be too big if we waited. Jake beat the doctors to the punch and came on his own that day, without induction. So like him to be accommodating. Eight pounds, 15 ounces of beautiful, long, sweet baby boy. John and I knew Valentine’s Day would be forever spent preparing for his birthday and could care less. He is the best Valentine’s gift we could ever ask for.

Much love,
Beth