Professional sports figure… in our livingroom.

It all started with a phone call…

We received a call from The Littlest Hero’s organization earlier in the morning, and were told that a professional sports figure from the Cleveland Browns would be dropping by our

house this afternoon to deliver some gifts for the family.  Naturally, the guessing game began for Carol and I… who could it be?  The rest of the morning was chaotic – Carol ran around the house like a mad woman, cleaning (de-clutering), while I worked.  It was hard to concentrate on work because we had no idea who was coming to our house.

Around 3:00pm, we received another phone call – the Caller ID displayed the name, Danielle Fraley.  I knew instantly that our professional sports figure was none other than Offensive lineman; Hank Fraley.  We learned that  Hank and his wife, Danielle support the The Littlest Hero’s organization and every year they sponsor/adopt a family over the holidays.  This year, they chose our family.

The Fraley family arrived around 3:30pm, and let me tell you, Hank is a big guy.  I took a picture of him stepping into our home – wow!

We talked allot about his career, the Browns, his family and of course Kaylee.  We finally got around to opening the gifts they brought.  Kaylee and Kyle were in 7th heaven – they were opening christmas gifts “early”.  Both were VERY happy with their gifts.  Kaylee ran around the house wearing her gifts the rest of the evening and played with her new toys, while Kyle tried out his new Tony Hawk skateboard game for the Nintendo Wii.  He too wore his new clothing the rest of the evening.

What a huge honor it was to have Hank and his wife in our home, we’ve never met a more loving and caring family. We’re not used to receiving donations and gifts like this, so you can imagine the overwhelming feelings we were experiencing yesterday.  The Littlest Hero’s organization really did make this Christmas a very special one for our family.  THANK YOU from the bottom of our hearts.

GO BROWNS!

Quick Trip to Cleveland Clinic

Monday was a quick trip to the Cleveland Clinic for a blood test for Kaylee.  Grandma and Papa with the trailer came with us today, and we were happy with the good blood results that Kaylee received.  That meant no blood transfusion for today   Each year, the outpatient clinic hosts a Christmas party for the children, with a generous family providing gifts for the children.  The party was cancelled for this year due to the H1N1 virus, but Kaylee received her present today during her visit, a Leapster and Sonic and Star Wars math games.   She immediately started playing the Sonic game and barely blinked an eye while Nurse Holly did her exam!  She definitely liked the game  

Since Kaylee’s counts were still good (and Nurse Holly gave the ok), Kaylee, Kyle and I headed up to the mall to see Santa.  Neither Kaylee or Kyle told Santa what they wanted – I guess it was stage fright because Kaylee wants everything she sees on TV!  And anything she sees that is boy related – well, Kyle must want that   Along with the trip to see Santa, they rode the little train and had a good time.  We had lots of good smiles and used lots of hand sanitizer today! 

The next two days should be quiet without any doctor visits (cross our fingers), and then we will head to Rainbow each morning for the remainder of the week and weekend for blood tests.   Her counts will continue to drop for the next few days, and once they are on the rise again (specifically her white blood cell count), she will be admitted to Rainbow for the temporary leg catheter and stem cell collection (white blood cell) once again.  She will probably be admitted over the weekend or next Monday, and hopefully it will only be for one or two days.  It’s a waiting game right now, so we just take it one day at a time! 

As always, thank you for the continued thoughts and prayers.  Kaylee is feeling great right now and is playing and having fun like she normally does!  She is a very active 4 year old girl   We are grateful for all the love and support from everyone – it is really overwhelming and we can’t say thank you enough!  Thank you!  We are sending our love and kisses to you too!

So Good to be Home

It is so good to be home!  Kaylee has been very busy, spending lots of time with Kyle.  Being home is so good for both of them!  Friday night, Uncle Jesse came over, and we all ordered pizza and pasta and had a nice quiet evening.  I headed out to do some shopping, since our schedule for the next couple of weeks is up in air now with the pending stem cell collection.   Kaylee helped the boys with their video games and just enjoyed hanging out with the boys. 

Saturday morning, Kyle and I headed to the doctor’s office for his annual exam.  He is a healthy growing boy!  We stopped at a few stores on the way home and then came home to put up and decorate our Christmas tree.  Jamie was in charge of the lights, and Kyle was a big helper, as always!  Kaylee enjoyed unwrapping all of the ornaments, while she handed them to Kyle and me to hang.  Kaylee even enjoyed hanging a few ornaments herself!  After every branch of the tree had an ornament, it was time for the garland   We all had a great time, and our house finally looks like Christmas is on it’s way! 

Saturday evening, Kaylee took her weekly bath, and Jamie and I changed the dressing on her broviac.  She let Jamie flush her tubies while she played a princess Nintendo DS game.  Jamie and I gave her the daily neupogen injection and then she was all set for the night!  Uncle Jesse came back over, so she hung out again with the boys, while my brother, Tom, and I headed to the Branding Iron Cookhouse for a late dinner.

Thank you to Shawn and Gary for being great guest bartenders, and thank you to the Branding Iron Cookhouse for hosting them!  Thank you to everyone who came out to support us – we are very grateful to have so many caring friends and family.  It was nice to see and talk to everyone

Our plan for Sunday is to have a quiet day at home, doing laundry and playing games.  We hope you are all enjoying your weekends too! 

Thank you again to everyone for your thoughts and prayers.  We are so very grateful for all that you have done and continue to do for our family.  We are sending our love and prayers to you too!  Enjoy the rest of your weekend

Branding Iron on Sat., Dec. 12

I have just been informed today that our friend, Shawn Kroeger, is going to be a “guest” bartender at the Branding Iron Cookhouse restaurant/bar in Mentor on Saturday, December 12.  He will be tending bar from 5 pm until 11 pm, and any tips he earns will be donated to Kaylee’s Fund.

The Branding Iron Cookhouse is located at the intersection of Rt. 615 and Market Street (near Rt. 2):

8450 Market Street
Mentor, OH 44060-4100
(440) 266-0000

brandingironcookhouse.com

Jamie or I might try to stop up for a little while, all depending on how Kaylee is feeling.  Hopefully we will see you there!

Cycle 4, Day 2-4: Cyclophosphamide, Doxorubicin & Vincristine

It’s been a really long week for all of us, but Kaylee should be coming home this morning sometime. It’s been a pretty uneventful week for Kaylee – since Tuesday, she has not gotten sick once – woohoo! We played a lot of games, played with our computers, played with some toys, watched some cartoons on television and rode a bicycle up and down the hallways of the hospital. I originally thought she was not allowed to leave her room, but we learned that she just could not leave the floor.

On Tuesday evening, Carol went home for a few hours to be with Kyle while Grandma and Papa (through the woods) went to a dinner. I spent the evening with Kaylee and my parents (Grandma and Papa with the trailer). We all had a great time together – I think the best part of the evening was chasing after Kaylee while she rode her bike up and down the halls. I know for sure I’m out of shape! When mommy returned to the hospital, we spent the rest of our evening watching some television, and then headed to bed.

Wednesday (all day) was pretty much the same as Tuesday – we were visited by lots of doctors and nurses, and we spent most of the day playing. I think the best part of the day on Wednesday was the wonderful nap we all had. Kaylee and I slept for a few hours and woke up to a few visitors – Grandma and Papa (with the trailer).

Thursday was a little more eventful… Kaylee received a visit from Miss Sarah with Child Life (and a friend). Kaylee, mommy, Sarah and her friend all played a game of My Little Ponies (Candy Land). It looked like the girls were having a lot of fun. A little later in the afternoon, we finally met with the surgeon who would be removing Kaylee’s tumor. We learned that there are a few options for the removal, but which one we use depends completely on how much the tumor shrinks. Right now, the surgery is tentatively penciled in for the 3rd week in January. Kaylee will go through her normal scans (CT, MRI and MIBG) the week before – from those scans, we can determine which surgical method they will use on Kaylee.

A little later in the afternoon, Grandma and Papa (through the woods) came down to visit with us. Kaylee was excited to have new visitors! Carol and I took the opportunity to run downstairs and grab some food – quality time alone, while Kaylee visited with Grandma and papa. On our way back to Kaylee’s room, we ran into nurse Becky, who informed us that they had to move Kaylee from her room to another because the room next to us had flooded and the water made it’s way into our room. The only way Becky could explain it is that the room next door looked like Niagara Falls – there was so much water.

My day ended when we received a phone call from Dr. Auletta (Rainbow Babies and Children’s Hospital). We’re not really sure where the miscommunication occurred, or who messed up, but we were informed that Kaylee’s stem cell harvest was reported incorrectly, and that her results came back positive for contamination in the blood. What this means is that next week, Kaylee will be back in Rainbow to go through another stem cell harvest procedure – looks like will be visiting with nurse Joe sooner than we expected. Though this news is really upsetting to us, we knew going into the procedure the first time, that the possibility of her blood still being contaminated was likely. We thought we dodged a bullet, but it turns out we did not… I’ll keep you posted on next weeks procedure.

Well, Kaylee and mommy should be home sometime this morning. Grandma and Papa (with the trailer), are heading down to pick them up! Yea! I think we’re going to spend Saturday cleaning and decorating the house for Christmas! I know the kids were looking forward to putting up our tree.

Thank you for all of your support and love. We are sending our love and prayers to all of you too. Hugs and kisses from Kaylee and the family

Cycle 4, Day 1: Cyclophosphamide, Doxorubicin & Vincristine

Day 1 went pretty well despite the late start. We arrived at the clinic around 11:00am, where they drew some blood from her red tube… well, I should say Kaylee drew some blood. Kaylee is getting really good at drawing her own blood. The nurses are so amazed with Kaylee – she’s so willing to help. A short while later, the results from the blood draw came back, and everything was positive. It was time to hydrate… hydrate some more… and hydrate even more. The pre-hydration process is required before we can start chemo.

It was after 1:00pm before we were finally in a room. We weren’t in the room 5 minutes, and Kaylee was already wrestling with Bear Bear, and playing with the bed controls. I think 3-5 different residents, nurses and doctors came in to visit Kaylee, each of them donning a stethoscope. They all listened to her chest, stomach and back… one of these days, I think I’m going to have kaylee take the “cold” end of the stethoscope and yell into it, “Is this thing on?” I’ll feel bad for the person on the other end ~ hehe.

The chemo Kaylee is to take this round is Cyclophosphamide, Doxorubicin & Vincristine. The Cyclophosphamide is nothing new to Kaylee, she had this drug in Cycle 1 and 2, but the major difference this time around is that she will take the Cyclophosphamide for 6 hours (every day) rather than 1 hour. To combat the side-effects of Cyclophosphamide, she will receive a medication called Mesna. She did not receive the Mesna in Cycle 1 and 2 because she only received the drug for an hour each day.

The Doxorubicin & Vincristine are both new drugs for Kaylee. The Vincristine is a quick one shot dose administered through her tubes. Moving on, we have the “Big Dawg” – a chemo/drug called Doxorubicin! Kaylee will receive this drug for 72 hours straight. It’s administered at a very slow rate, but her body will receive chemo for 72 hours straight – that’s a long time for her.

It’s now 6:00pm, and they’ve finally started her chemo. As usual, everything has gone smoothly – Kaylee is playing on the computer, Carol is working on her laptop, and I’m playing on my computer… notice a pattern – we love our technology.

We had a few more visitors; Kristy, Sarah and Uncle Jesse. Kristy and Sarah hung out for a little bit to chit-chat with us and play with Kaylee. Jesse and I finished up the flyer for Kaylee’s benefit dinner – you know the one on January 30th at the Patrician Party Center in Eastlake, OH at 6:00pm. The same one with door prizes and cash bar and lot’s of good food. Did I just plug the event? hehe.

Kaylee finally fell asleep around 11:00pm with Carol not so far behind her… I was a different story, I think I finally went to bed around 2:30am ~ thanks Starbucks.

This morning has been a bit rough for all of us. To begin with, Carol scared off the medical student twice – we haven’t seen him since. He came in at 7:20am wanting to do an exam on her… I think we found our first victim – “Excuse me sir, can we see your stethoscope”. Kaylee got sick once when she first woke up, but was her happy-go-lucky self after that. Kaylee played on the computer for a little bit before laying back down to rest a bit more. Her stomach was still bothering her.

Thank you all for your support and love. The continuous support is overwhelming, but very much appreciated. I wish I could thank each and every one of you individually, but since there are so many of you, all I can do is send my thanks with a promise that your generosity and support will not be forgotten. We love you all – Kaylee sends lots of hugs and kisses.

Good End to the Weekend

It is now Sunday night, and Kaylee and Kyle are tucked snuggly into bed!  Today was another good day and a nice way to end the weekend.  Kyle and I went to church and lit another candle for Kaylee.  After we all had some lunch, Kaylee, Kyle, Jamie, and I headed to Mountain Creek Tree Farm for our annual Christmas tree hunt.  We normally go out into the field to cut a tree down (and I always have a good laugh and smile), but the fields with the white pine trees are being replanted and are not quite ready.   So we selected a tree that had already been cut, and I think it will look wonderful in our house.  We will probably decorate it next weekend with our many lights and ornaments! 

Kyle taught Kaylee how to play Monopoly Junior this morning, so the three of us played another game this afternoon.  I would like to call it beginners luck because Kaylee won our game!  We all had fun  

After dinner, we snuggled up to watch Rudolf the Red Nosed Reindeer, which the kids really enjoyed.  Jamie and I (and probably most of you too) watched this show as kids, and it is fun to share it with our kids too!   All in all, it was a fun family day! 

I am busy finishing the last minute laundry and packing our bags for tomorrow.  Kaylee helped to pick out her clothes for the next week – she loves to wear fun socks   Kaylee picked out a few games, books, puzzles, and crafts to take with us, and if she had it her way, she would take all the toys in her room!  Kaylee, Jamie, and I will be down at the Cleveland Clinic at 11:00 tomorrow in the outpatient clinic for a quick blood draw and possible pre-hydration fluids.  We hope to be upstairs in our pediatric oncology room by early afternoon so they can start the chemotherapy. 

I am praying for another successful cycle of chemotherapy that will help reduce the size of the tumors.  Kaylee asked me what happens when the blue cells (tumor cells) get into her bones, and I told her that it makes her legs hurt.  She told me that her back does not hurt anymore either!  That is so great to hear   We will give her more “super power juice” to make the blue cells go away. 

We thank you as always for the continued thoughts and prayers; I think we can feel them!  We appreciate all of the support and love that you show us!  We are sending our love and prayers to you too!  Nighty night!

More Good Days

The rest of Kaylee’s week has been relaxing and as “normal” as it gets for now!  On Thursday, Kaylee went to Penitentiary Glenn with Grandma and Papa Through the Woods, while I went into work for another meeting.  At Penitentiary Glenn, a room is decorated like a giant winter-themed storyboard, and you are the pawns in the game.  Kaylee had a great time going through the game board LOTS of times!  She enjoyed sliding down the slide at the end of the game!  I am sure we will make another visit to Penitentiary Glenn before the season is over to play again

We had a quiet Thursday evening and had pasta casserole for dinner.  Thank you Mary!  We were all tired from the day and headed to bed early!

Friday was another quiet day at home.  Jamie worked, while Kaylee and I played with her Fisher Price village that we built.  Kaylee’s imagination is just amazing to me – she gave each little person (and animal) a bath before putting them to bed, then we had a dance party with the people, and then each person went to the ice cream store to get a treat.  We had a very fun morning   She played for a while in the afternoon, while I ran out to do a few errands.

Kyle and Jamie headed to the Cleveland Cavaliers game Friday evening; Kyle earned a free ticket from his school’s fundraiser.  The boys had a great time and brought home a win!  The Tooth Fairy visited Kyle for the loose tooth he pulled out before the Cavs Game.  Kaylee and I had a quiet evening and were both asleep before the boys came home!  She took her weekly bath (with sponge baths in between), and I changed her dressing on her broviac catheter site.  She did much better with this dressing change, since she was playing her new Disney Princess game on the Nintendo DS.  I think we finally found something to distract her!

It is now Saturday afternoon, and the snow is falling.  It is starting to stick to the grass and finally look like winter!  Kyle and Kaylee are upstairs playing and jumping around.  This is a wonderful day   I am doing laundry in preparation for Kaylee’s next chemotherapy cycle on Monday.  This next cycle is 3 days long, with one daily 6 hour drug and one 24 hour drug (total of 72 hours).  This cycle will be a much longer dose of chemotherapy than she has received in the previous sessions (all the prior sessions were 2 drugs at 1 hour each), so we are not sure what her side effects will be like.   And since one of the drugs is a 24 hour drug, Kaylee will need to stay on the pediatric oncology floor of the hospital – no visits downstairs to the playroom.  I have already started to gather crafts and games to keep us occupied for 4 days, and Miss Sarah, the Child Life Specialist, will send up lots of activities for us to do also!  We will just take it one day at a time and see how Kaylee is doing

Thank you for all of the continued thoughts and prayers.  We are all so grateful for all of the well wishes and the generosity to our family.  We are sending all of our love and prayers to you too.  Have a good weekend!

Good Days for Kaylee

The past two days have been good days for Kaylee.  She is feeling good and enjoying the time away from the hospital.  Tuesday, I went into work for the day, while Jamie worked from home and hung out with Kaylee.  I think they had a good time together and enjoyed the quiet house   We ordered a pizza for dinner, compliments of Cindy (thank you Cindy), and Kaylee came with me to pick it up.  She must have been hungry because she couldn’t wait to get home to eat it!  She ate a whole piece of sausage and pepperoni pizza in the car   Kyle and I played some more Uno (that has become a favorite in our house), and Kaylee set up the “prize store” for the winner of each hand.  She had fun prizes: playdough, sunglasses, Spongebob stuffed animal, bubbles… We all had a good time

Today, Kaylee spent some time at Grandma and Papa with the Trailer’s house, while I headed into work for a few hours.  She watched Beverly Hills Chihuahua and colored and did mazes, all fun things for her to do!  When Kyle came home from school, the three of us took a trip to the Cleveland Clinic for Kyle to receive his  H1N1 booster vaccination.   Kaylee was so happy that the nurses did not want to do anything to her   It took us quite awhile to get home due to an accident on the freeway, but the kids did great in the car on our ride home.   Kyle read Kaylee and me a story before bed and then I tucked them in for the night. 

Thank you to everyone for the continued thoughts and prayers and words of encouragement.  It is great to know that so many people are still praying for her on a daily basis and helping us through this.  We are sending all of our love and prayers to you too!  Hugs and kisses and nighty night!

A Day for Good News

Today was a day filled with good news for Kaylee   She, Grandma and Papa through the Woods, and I went to the Cleveland Clinic for a blood draw and check of her blood counts.  Her counts came back fabulous (did I say that?), so she did not need a platelets transfusion today.  And since her white blood cell counts are high enough, we can stop the nightly neupogen injections until the next chemotherapy cycle!  Kaylee liked that news the best!  She does not need to return to Cleveland Clinic for the rest of the week   Kaylee’s Nurse Practitioner, Holly, shared the results from the MIBG scan last week, and said that Kaylee’s tumor has stopped growing and there are no signs of any new growth!  That was great news  

Kaylee was able to get her booster shot for the H1N1 vaccine today, so she is all set.  (I will take Kyle to the Cleveland Clinic on Wednesday to get his booster shot).  We were on our way home within 1 1/2 hours, and she was ready to play at Grandma and Papa’s house for the afternoon.  I came home to work for awhile and make a few phone calls.  I sent an email to Dr. Auletta at Rainbow Babies and Childrens Hospital to ask about the results from Kaylee’s stem cell collection.  He replied within a few hours and said that her stem cells are free of contamination of the tumor!  That means Kaylee will not need to do another collection (and have another temporary line placed in her leg) before the transplant in spring 2010!  That was great news to hear!!  Jamie and I (and I think a lot of you too) are so relieved!   We are so pleased with all of the good news today and wanted to share with all of you!   

We spent the evening together eating the French Toast Casserole, compliments of Peggy (thank you Peggy) and then playing Curious George Uno and Batman Uno.  The kids both really shouting Uno and having a good time.  Before we knew it, it was time for story and bed.  We read Wacky Wednesday, one of the kids’ favorite books, and then off to sleep they went. 

Thank you as always for the thoughts and prayers – I think they are working   We had such a good day today, and we are looking forward to many more like this.  Hugs and kisses (and high fives) from Kaylee and the rest of us!  Good night…