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Friday, August 8, 2008 10:39 PM CDT

HAPPY BIRTHDAY JAKE DALE!!
3 YEARS IN REMISSION TODAY!
HE IS A MIRACLE BEFORE OUR EYES!!

Jake had a wonderful birthday today!! Celebrated with Daddy-Matt and family during the afternoon and then hit up a mini golf place with baba, papa, mommy, and chad-dad. This cool place also has an ice cream parlor and an arcade! We had a blast!! On Sunday we are having his big party! Family here for a BBQ then off to Kids Spot to meet friends! He has recieved so many gifts: a new Trek bike, several lego duplo sets, trip to Legoland Discovery Center,remote control quad, 2 play doh sets, books, books, clothes, jet fighters, cars, Leapster L-Max, L-Max games, and that's just to name a few and we haven't even had our big party yet, not to mention all the money sent to him, that college fund is growing! VERY, VERY lucky little boy, however, we feel like we are the lucky ones to have him in our lives.

Thanks for the messages! We will update with pictures after the party on Sunday!
Love,
Kellie, Chad, and always JAKE!

Friday, March 7, 2008 12:05 AM CST

Here is the link you can go to for viewing some of our Make A Wish pics!


Hello Again!
I know it has been a long time coming..so sorry. Since the last update in September a lot has happened...all good!
In October we went to Orlando! Jake could have cared less about Disney World. The resort we stayed at Give Kids the World Village was the most amazing place on earth!!!! We all fell in love with it and wanted to stay forever!! Ice cream all day long, two pools (one of which was right outside our villa and it was the smaller pool so it was like our own private pool), Awesome Merry-G0-Round, Castle, Dino Putt-Putt, a Train (really a trolley like thing) that picked us up at our villa and took us anywhere on the resort or just for a ride, Christmas on Thursday night complete with Santa, presents, fake snow and much more....Jake fell in love with the beach and most importantly SHAMU! Also he developed a passion for airplanes and jets. He flies one on a daily basis (in his pretend world). We hit Sea World on our last full day there and I am so happy because he was finally starting to come out of his shell and talk to characters so it was truly magical for him! We honestly hear about Shamu and Sea World on a daily basis,so yes we will be heading back to Orlando, but next time it will be without the magical Make-A-Wish button and accomadations. We cannot thank Make-A-Wish and Give Kids the World enough. Truly amazing what they do for children and what they did for our family. Absolutely precious memories that we will hold in our hearts for a lifetime! I literally have over 1,000 pics of the trip and will have to download a few to my computer soon so you all can see his joy. Thankfully the Give Kids the World Village provided FREE photography service. Each time my memory card was full they would transfer it to a disk in slideshow format and they also provided us with a video camera and did the same! Talk about rolling out the red carpet. If anyone is heading to Sea World we would highly recommend the Dinner Buffet that includes the Shamu Rocks show...we all left that night in tears. Eating next to Shamu was awesome and then the show...WOW! Odd how killer whales left us all so emotional! Thank you, thank you, thank you Make-A-Wish! And extra big thanks to our Make-A-Wish ladies who were so good to us and Jake!
After the trip we went back to normal life. I panicked that Jake may have relapsed because he was acting like a normal 3 year old (tired, cranky, not eating, etc) thankfully he had a check up in December and he is all CLEAR!!!! Next visit December of this year!!!
Then Chad and I decdided to start looking at homes since the prices are so fantastic right now........Well, we fell in love with the second house we saw and it was ours 32 days later......Jake is thrilled! Even though he was not too happy about leaving the plantation....this meant no longer being a few hundred yards from Papa and Baba. However, he has really adjusted well!

He is doing fantastic in school. He is obcessed with numbers!!!!!!!!! Seriously almost scary. Just enrolled him in Pre-K4! What a blessing!

Hope all is well and look forward to updating pics soon!

Monday, October 8, 2007 3:05 PM CDT

Hello All!
It's been awhile and boy have we been busy! Jake is absolutely LOVING school! Thank the Lord! He has already had playdates with classmates, so all is going well. Plus, he loves his teacher.
He had his first sleepover this weekend. His cousins, Ella and Lexie, spent the night this past Saturday and he loved it. As a matter of fact, he was so excited that he woke us all up at 6am Sunday morning! Can't say I was excited about that. Oh well, it must have been so awesome for him to wake up and have friends there willing to play with him right away instead of Mom and Chad-Dad saying ok Buddy, just let us wake up for a few minutes before we get the monster trucks out...
Two Friday's ago he had tubes put in his ears. I was tired of him getting ear infections, so scheduled an appointment with an ENT at Children's who confirmed fluid in his ears...Evidently, the doctor was amazed by how much fluid was in his ears when he drained them during surgery, so we are very happy that we had it done. Of course, it was a breeze for Jake. Never once did he complain of pain or mind the ear drops. Such a trooper.
Jake is taking advantage of the last few weeks of good weather. He loves riding on the quad that his Dad and Jann gave him for his birthday. He even waxes the thing. I think he now believes that his is part of the Big Guy club since he has something with an engine because if I come into the barn when they are all in there with their toys, he will ask me to leave because it is too dangerous with all the fumes(even though nothing is running). Already being ditched for the men.

We have been to Goebbert's Pumpkin Patch twice already. He loves that place. However, both times we have gone it has been way too hot, so we are waiting for it to cool down, so we can take pictures of us all bundled up picking out our pumpkins...Odd I know, but it doesn't feel right picking pumpkins in shorts, sandals, and tank tops.
Hope all is well with everyone!

Monday, August 27, 2007 1:53 PM CDT

Hello All!
What a great weekend we had. We had to have a good time after Jake's very stressful first two days of school...Bless his little heart...The first day he was trying to be brave, but he was having a hard time looking at me without crying. When it came time for me to leave, he was a wreck!!! Aunt Titi came by to help, he was even kicking and screaming when she took him...He even ran for his backpack to run out of the room. When Aunt Titi left he cried for a minute more and then stood there shuddering. So sad. I was spying from the windows and at this point I was hysterical as well. I have never been able to not hold him when he is that sad. His teacher said he was fine the rest of the day. Second day, same ordeal. Cried on the way to schook. I had to carry him into school because he refused to go. However, he stopped crying the minute I left. He still stood there though looking very scared. So you can see why I tried to make it up to him all weekend. We had the best time hanging out at home. We talked about school alot. And one night we were lying in bed and he said, "Mommy, I kinda like that lady at school." Referring to his teacher.
Today, we had no tears!!! On the way to school he said,"Mom, I'm not going to cry today". This said with tears in his eyes. So I told him it was ok to cry if he missed me at which point he turned his head and started crying and said,"No Mom these are happy tears." And that was it. He wanted me to take a picture of him inside the school (on slideshow) and then I walked him to the door said bye and dashed....watched from the window and he was fine. Talking to the teacher and being himself...RELIEF! So glad that is over. Hopefully, we will have more of these easy drop offs.

That is it for now. Have to get back to work!

Monday, August 20, 2007 10:52 AM CDT

JAKE AT BOONE COUNTY TRACTOR PULLS WITH HIS BIG MUFFS HE HAS FROM THE MONSTER TRUCK JAM!



Hello All!
This is going to be a very exciting week for Jake! He starts school this Thursday!!!!!! We are so thrilled. He will be attending Open Bible Academy and will go 5 days a week in the afternoons. I am so awestruck. Seriously, when he was a baby I could not shake the images of little black coffins. When these images would creep into my mind I would always try to replace them with an image of him running into his classroom with an oversized backpack on and it would never work...Guess what, the backpack image won and is going to happen this Thursday. I am going to be such a wreck! The good thing I guess is that after I drop Jake off I have to rush back to class myself so I won't be able to cry all afternoon.

Cannot say thank you enough to everyone who has helped get our little Jake to this big moment in his life. All the prayers and support have worked!

I thought I would share with everyone a few moments that Jake and I have shared recently that have made me realize that Jake's cancer diagnosis will always have a huge impact on his life even though he was a baby.

1) Jake and I were walking up the staircase and he was moving slowly. So I said, "C'mon Jake, I have to go to the doctor and I don't want to be late." Jake's response, "Oh Mommy, you have cancer too?". I have never mentioned going to the doctor myself, so he thought since I had to go to the doctor it must be because of cancer...break my heart.

2)The other day we were lying in bed telling each other stories (one of Jake's favorite things to do). I asked him what story he wanted me to tell him. His response, "Mommy, tell me your cancer story". Keep in mind, we have no story titled, Jake's cancer story, so I do not know where this came from. The only story that we talk about him having cancer is the one involving Papa taking him on tractor rides when he would not stop crying from all the medicine the doctors gave him to get rid of his cancer. This story he refers to as Tractor Story.

3) This final story happened this past Saturday. Jake and I were having a serious discussion about his caffeine usage...Yes, he manages to manipulate Baba and Papa into giving him caffeine at times. Chad and I are trying to get him to say no and not to ask for it. We tell him it may stop his growth, which would be awful for Jake who always says proudly, "Yep, I think I'm growing". So I had caught him drinking pop at my Mom's house on Friday, so Saturday I was telling him again how caffeine is bad for his health...Jake gets this really serious look on his face, looks me dead in the eye..."So if I drink caffeine, my cancer will come back?".....WHAT? I could not believe this came out of his mouth. He is seriously way too smart. Obviously , I told him no way! We have never even discussed his cancer coming back.

All of these events, lead up to the fact that Jake is very aware that he had cancer and it is a big deal. We all have to be very careful what is said around him and make sure he always feels comfortable like this to speak about it. He breaks my heart but also makes me so proud at the same time. So wise for such a young age.

Take care!

Love,
Kellie and Jake

Thursday, August 9, 2007 9:33 AM CDT

JAKE DALE IS 3 YEARS OLD!!! AND TWO YEARS LIVING WITHOUT CANCER!!!

As you can see we are so happy! What a beautiful day. We decided to give him his sandbox the night before his birthday so he could play with it all day. Can you believe that is the biggest sandbox they had in this area? Every store told me it was too late in the season and they were all sold out! Oh well, he likes it. Jake had specific instructions for his birthday: "Mom, I want to do nuffin' and stay home all day and play". Good deal, Jake. That is what he did. Papa had dropped off his doughnut and Sprite from Shell before Jake woke up. Yes, I said Sprite, Papa is a staple at our local Shell and when he takes the grandchildren they get whatever they want, so Jake always requests a dougnut and Sprite. When Jake woke up I told him that Papa had already dropped off stuff from Shell. He booked out of bed and downstairs. Then we went outside and what do you know, Papa was still home and cleaning the big tractor! Jake was so happy about this. He hung out with Papa for awhile and then came back to his sandbox, back by papa, sandbox, and so on. This is what he did the whole morning.
Oh, I forgot to mention that Chad-Dad had the day off before Jake's birthday so that was there day together. Of course, it started off with a visit to Dr. Singer since Jake has a killer ear infection. Then they went to the shoe store and Chad-Dad surprised Jake with a pair of PF Flyers! Jake is obcessed with the movie, The Sandlot, and his hero Benny wears PF Flyers so Jake is always pretending to wear them. Well, now he has his own RED pair and wants to wear them everywhere. Even in the house!!
We went out to lunch with his Papa and Baba and then Baba and I had to go to the grocery store so Jake got to go to the hardware store with Papa which was so exciting for him. When we came home Jake and I baked his strawberry cakes in little heart containers, so everybody would have their own little cake. At around this time, Aunt Titi and the cousins showed up! The kids decorated the cakes (look at the slideshow, quite messy). Buddy, my brother's new family dog, was very happy as he hoovered his way around the kids chairs eating whatever they dropped. Then it was play time! Those kids know how to have a good time! By the end of the day, Jake had a lot of cash and several new toys.
Tonight we will probably head over to the Boone County Fair to watch the tractor/truck pulls. Jake caught a glimpse of it last year and went crazy, so hopefully we will be able to enjoy the whole show tonight!
This was Jake's first birthday that I was able to spend the whole day with him! His first birthday he was in surgery and last year I worked, so yesterday meant the world to me! What a blessing. Every birthday is going to be so emotional since it means another year has passed with our beautiful boy and another year of being cancer free!!! Love those words!
And once again after looking over Jake's pics from yesterday, notice I managed no shots of myself and Chad-Dad with Jake. I really need to do better. The shots of Jake blowing out his candles is on Gigi's camera so I will get those later!
Take care and thanks for the birthday wishes! Special thanks to Coins4Kids who sent Jake an e-card! Please visit them at www.coins4kids.org and buy a piggy bank and start using your spare change to help save lives!

SPEAKING OF COINS4KIDS, CHECK OUT THEIR FEATURED KIDS FOR AUGUST PAGE AND SEE SOME CUTE PICS OF JAKE!!!

Thursday, August 9, 2007 8:21 AM CDT

HAPPY BIRTHDAY JAKE!
YESTERDAY JAKE TURNED 3 YEARS OLD!
GREATER NEWS, IT ALSO MARKED 2 YEARS OF BEING CANCER FREE!!!
PROMISE TO UPDATE LATER WITH PHOTOS FROM HIS DAY!!

Monday, July 30, 2007 9:44 AM CDT

Hello All!
Really quick message today. Jake is doing great! He had a wonderful weekend spent with family. One of my Dad's brothers came in from Georgia and his children and grandchildren all came so it was quite the party! Jake absolutely loved it! We had 13 children over ranging from almost 3 to 16 years old. Woohoo! Will update this week with some of the pics!

What we really need now is help raising funds for the Pedal for Wishes event this weekend. I know short notice, but I have been so busy this summer that this is my week to really try to get donations. We have a team now of 8 that is going to particpate in the Pedal for Wishes event. We want to raise $6000 so we can sponsor a child's Make A Wish wish! Make A Wish is truly a wonderful organization that brings smiles and hope to so many families battling different childhood diseases/illnesses. If you are interested in donating, it is quite simple!
1) www.pedalforwishes.org
2) Bottom right corner click on our team name, Riding for Jake
3) You can click on the top to make a general team donation or click on one of our team members names to donate on behalf of one us us!
4) Just follow the steps that pop up!
5) Smile knowing you helped bring much needed hope and happiness to a family!

Thanks!
Kellie and Jake

Tuesday, July 17, 2007 2:31 PM CDT

Yep, that is Baba(Jake's grandma, my Mom) who shaved her head at St. Baldricks for her grandbabies!! We sure are proud of her.

Sorry it has been so long without an update. We have been super busy. We left off with Jake and I going to the NB conference in Chicago. It was amazing. We met so many nice people. Jake made a really good friend named, Alex, who lives in Texas. There were too cute together. Jake had his first experience in a daycare setting while we were there and of course, got hurt. The first 3 hours in daycare he ran into a glass wall and his big toenail popped up..OUCH..he handled it well though and actually went back that afternoon..I learned alot...mostly realized how lucky we are that Jake is only intermediate risk. The children and the parents of High Risk kids are the most brave, courageous, informed people I have ever met.

After that weekend, Jake spent most of his time playing with his cousins and going to the pool. We had a relaxing 4th of July as we spent it at Chad's moms house. We did not go see any public fireworks since Jake has been showing fear of loud noises and we did not want to frighten him. Luckily enough, our friends had their own private fireworks display at their Lake Geneva house so we took Jake up there to watch them. He enjoyed them, exclaiming, "OH, that was my favorite" afer every firework. Since we were able to watch off their terrace and the fireworks were over the lake it really wasn't as loud as public fireworks so I think it went well.

Last week we were able to run up North to Papa Carl's home for 2 splendid days. Papa Carl was not there, but Jake was determined he was going to be coming even after we repeatedly told him that Papa Carl was actually visiting in Illinois and would not be there. We were able to go boating (even got rained on), ride Jake's bike and jeep, go to a garage sale, go shopping.........and most importantly relax. Jake loved it. He did not want to leave and we had to agree with him. Jake is really into storytelling right now, so there was alot of that going on and Chad even came up with a new 'Muskrat Fever' story. Which Chad had to repeat several times up there and on the 5 hour ride home....hmmm...along with several other stories. I finally became so sick of telling stories over and over that I called Papa Dale and had him tell Jake the bee story over the phone.

We came home Thursday night, and had to get ready for Jake's pool birthday party and the St. Baldrick's event which were both on Saturday! The St. Baldrick's event was cool because Jake was the honored child. He was given free entrance and free shirt and access to all the fire trucks and invites to all the fire departments. The Harvard Fire Department though really brought out the flood of tears. They gave Jake a hat, little fire truck bank, coffee mugs for us, stickers, etc....Plus, gave us an invite to come anytime for rides AND they invited Jake to ride on the fire truck during their town's parade!!! A boy's dream come true!! When people open up their hearts and embrace your child, it is so humbling. And somehow scary because at these moments you really remember that your kid had CANCER...yuck. Uncle Shane (my brother) and Aunt Titi made awesome shirts for the event...I went to get one at the end of the night and they were all gone so I am hoping they will make some for us. Not to mention, Papa Dale, Uncle Shane, our neighbor Mr. Dan (Shannon's Dad), 2 of Uncle Shane's friends, oh and BABA shaved their heads!!! I could not belive my mother really did it...Boy does that woman love her grandchildren! However, I think she looks beautiful. It was funny because Jake's youngest cousin, Grace who is 2, screamed when they were shaving Baba's head, pretty much freaked her out.
From the Baldrick's event we quick ran over to the Marengo Pool and had Jake and Grace's Double Trouble Birthday party! Spent two wonderful hours there and raised money for Coins4Kids (link at bottom of page) and then went back to St. Baldrick's because they wanted me to tell Jake's story..That was hard to muddle out but I did it. Then the band that was their sang a special song for pediatric cancer patients...It was quite an emotional day to say the least and I am glad it is over. I think Jake was too. The poor kid was going, going, going all day without a break and he did so good.

Today he woke up with a little fever and a cough so we will have to keep an eye on him to make sure it does not turn into pneumonia like Jake's colds typically do. Looking forward to going home today and cuddling with the little fella. He is such a character. He continues to be the joy in our lives..........
Thanks for still reading...
love,
Kellie and Jake

Wednesday, June 27, 2007 8:59 AM CDT

Happy Summer!
Hope everyone is staying cool. Jake is absolutely loving summer. He is outside everday playing The Sandlot (aka baseball), catching fireflies at night, going to the pool, digging in the garden,etc.

We had a terrific Father's Day. I will add a slideshow with some pics from that weekend. Also will put up another slideshow from when Jake was a baby. Oh, I would give anything to have him as a baby again. Just to hold him once more and feed him a bottle. He was so darn cute!!

This Thursday Jake and I head into Chicago for the weekend. We are attending the Children's Neuroblastoma Cancer Foundation's conference. It should be quite informative. They are having leading oncologists in the field of neuroblastoma from around the country there to give speaches on specific topics. Plus, it will be so wonderful to meet other parents and children who have walked the same journey. During the conference, Jake will be with all the other children in a separate room. Looking at pics from past conferences, it looks like a big party for the little ones. Needless to say, he is excited to go. This morning he said, "Mommy, we going to Chicago?". I said we leave tomorrow and he did not like that because he wanted to leave now. He is excited about staying in the hotel and he wants to order pizza. Of course, he associates Chicago with Oz Park so he wants to go there. Hopefully, we will have enough time to go. We shouldn't get lost since Papa is letting us have his GPS for the weeekend. He knows me to well, they just don't want the phone call of me freaking out that I don't know where I am. We should have fun and we will be sure to update with pics and information when we return.

And check out this link...http://stbaldricks.org/kids/kid_info.html?KidID=818
It is the St. Baldricks fundraiser we will be attending..pretty cool.
Take care!
Kellie and Jake

Friday, June 15, 2007 9:32 AM CDT

Hello Again!
Summer is being so good to us! Jake is absolutely loving being outside all day. He has been playing baseball and he is becoming quite good. Not even 3 years old yet and he can hit the ball when we pitch it to him! This week my nieces have been at my parents house, so Jake has LOVED playing with his cousins everyday!! They are so good to him. Ella is 6, Lexie 5, and Gracie will be 2 soon. They have been going to the pool. The slideshow is from yesterday at the pool. Geneva (my fantastic sister-in-law) and I are having Jake and Grace's birthday parties together this year and we rented out a pool, so we were trying to get a good pic of them yesterday for the invitations, but it didn't happen as you can see, one always had to move. They truly are Double Trouble, but we love it. We went with our neighbors, who have been so wonderful. The one daughter has been almost like our nanny. She absolutely adores Jake and he feels the same about her. You do not find many teenagers anymore with values and a love for family, so we feel so blessed to have her in our life.

Tomorrow Jake and I are headed to Chicago because Children's Memorial is having a celebration at a park for their patients, so it should be a great time. Then of course Sunday is Father's Day, so it will be another day of fun.

Thought I would end with a pic of my parents. They were my lifeline through Jake's treatment and they continue to be there for us whenever we need them. Truly could not imagine what I would do without them. Such wonderful people. And they normally do not have so much alcohol around them, actually they don't drink, but this was at my Dad's 50th birthday celebration downtown! WE love you guys!

Have a great weekend. Happy Father's Day to all the Dad's out there. Extra special Happy Father's Day to my Dad who is and always has been and always will be one of my favorite people. I love you so much Dad. And an extra, extra special Father's Day to Chad. He has taken Jake in as his own and is so incredible with him. Most biological fathers aren't as good a parent as he is. He takes part in every aspect of Jake's life including bedtime, discipline, cleaning up accidents, Dr. visits, getting him ready, loving him to no end, and taking him to the coolest places. That isn't even all of it. Coming from little experience with children to becoming one of the greatest Father's I have seen in just over a year, I am amazed by him. We love you Chad-Dad!

Kellie

Thursday, June 7, 2007 3:32 PM CDT

Hello All!
Great news from Jake's clinic visit yesterday! His oncologist said that Jake is done with routine scans! Can you believe it? She said that since he is 2 years free of cancer and Intermediate Risk that they only need to continue with CBC's and urinalysis's. This means no more IV's (unless he is ill and they have to do a CT scan to rule out a relapse), no more NG tubes, no more sedations, no more starvation!!!! Too exciting! AND she said that Jake is pretty much in the clear for a relapse! We could not be more thrilled! We celebrated last night with a bonfire and s'mores! He has been dying to have s'mores because they have them in the movie Sandlot. Of course, my camera was out of batteries, so I was unable to take pictures. It was so sweet though, he loved it....


Extra note: Baba (my Mom) initiated the potty training. She read the last journal and wanted some recognition (grandma's can be so high maintenance). Love Ya Mom! Will update with new pics soon!
For now we are busy loving life!


Kellie

Thursday, May 31, 2007 2:50 PM CDT

Quick update!
Jake potty trained overnight!!! WE just started putting underwear on him and that was it. Even stays dry at night, think he was more than ready.
Plus, he has been consistenly sleeping in his own bed. Even though he tends to be naughty when he is in his room alone. Last night he at around 9pm he came into our room and said, "Mommy, turn on your light"....okay..."Mommy, I wrote on my ball like Benny "(the Sandlot).....okay..."And on the wall." WHAT! Little stinker had snatched a pen and wrote on his baseball...fine his hero Benny does it on the Sandlot, but the wall?!? Needless to say, Jake spent 2 minutes on the naughty step and then went back to bed without the pen. Thanked him for being honest, but told him he had to stop being naughty whenever he is left alone in his bedroom (let's recall the paper in ear incident a week or so ago).

Life is full of surprises!

Monday, May 21, 2007 10:17 AM CDT

Happy Monday Morning!
I have some great pics of Jake to update with. The weekend started off great. Friday night we played outside, then played frisbee golf for hours (actually until 10pm!) Then we woke up at 2:30am to Jake puking all over!!! First time I have seen him this bad since his last round of chemo. He was so scared! We had to cut his shirt off because he refused to pull the icky thing over his head. Of course, within hours Chad and I had it. Wouldn't you know it Jake was feeling better by the afternoon, but by this time Chad and I could barely move..Jake showed us his perfect, angelic side. I told him he was full of germs and not to touch his toys. He never once whined or touched them. He took two naps with us and lounged around all day. He is amazing. Thankfully, we were feeling a little better Sunday (when I say little better I mean we could walk without being in extreme pain) and my mom arrived safely home from Seattle so we went up to her house. Jake was in heaven since he had not been out of the house in over 24 hours and he had not seen his Baba since Tuesday. While Chad and I were lying in the family room, I went to go check on mom and Jake since it was too quiet. I stumbled upon Baba giving Jake a haircut..We had been talking about giving him a haircut later that night, but the little stinkers started it without me. This was her first time cutting hair and Jake's first home haircut so it was interesting. However, he looks so handsome!
No new health news. Jake goes to see his oncologist on June 6, so that should be interesting. My mom and Jake are supposed to come by on my lunch hours so we can go look at puppies at the new pet store in town. Should be fun!!

Tuesday, May 15, 2007 2:39 PM CDT

Hello All!
Happy belated Mother's Day to all you Mommy's. We had a wonderful weekend. Jake gave me so many gifts. Including a finger painting, a bowl from Color Me Mine with his hand prints all over it, picture frames, Mommy and Son statue, and one of my favorites of all time a little musical keepsake box inspired by Make a Wish from Things Remembered, so beautiful!. One of the best gifts from Jake was that he fell asleep in his own bed for the first time ever! He has slept in his bed before, but I always have to lay with him. Well, Sunday night we (Chad and I) were watching Aviator in our bed and Jake wanted to watch his Land Before Time movie so I told he had to watch it in his room and he said ok. He had a little bit of a hard time. He would lie down in his bed and watch the movie, then pop up and come out by us, then go back into his room..This lasted until 11:30pm at which time he finally passed out on his own! It was hysterical though. He always calls my Dad crazy because he goes to work, comes back home, and then will go back to work. Well, in the middle of Jake coming into our room and then going back to his room, he came out and said to us, "Oh, I'm just crazy like that". What? He is so random. Then at one point he came out and stood next to my side of the bed and said, "Mom, there sumpin in my ear". Well, I pulled him up into the bed and sure enough there was something in his ear. It appeared to be some plastic shoved into his ear canal..I just looked at Chad (trying hard not to laugh, after chemo an er visit for random artifact in the ear is a joke) and said to go get tweezers. Jake was so still, obviously scared. I was able to pull it out and it was a piece of paper that he had shoved in there. We gave him a talk about how big of an owie he can get from putting things in his ear and in the middle of it he looked at Chad and said, "Chad you know you have brown eyes?". Okay, he is the king of distraction. He is so classic.

Oh yeah, another good one came as we were out at a country club with Chad's family for Mother's Day. Jake was just so stir crazy from the moment we walked in the place. Near the end of the meal, Jake stands up looks at me and says, "I need to drop a turd". Who says that? He must have picked it up from his cousins. So I took him to the bathroom and I will save you the details of his comments but the whole time in there he was talking quite loudly about his poop. I am sure the women leaving the bathroom were either laughing or quite disturbed. The kid never stops talking and he is always telling a story. I have to start writing them down more.

Anyways, as you can tell we are doing wonderful...The above slideshow is from today when I went home for lunch. Chad and Jake were planting the garden. Too cute.

Kellie and Jake

Wednesday, May 9, 2007 10:48 AM CDT

Monday, April 30, 2007 10:06 AM CDT

Hello All!
Hope everyone is enjoying this beautiful weather! We thought winter would never end. But it has and we are loving every moment of the weather!

This weekend we visited Gram Jean and fed the ducks by the river and then came home to meet up with the family and go to dinner and the carnival! Jake was able to go on rides with his cousins and Baba, Papa, Chad-Dad, Mommy, Aunt Titi and Papa Carl! We had a wonderful time. It is too much fun when we all get together.

Then on Sunday Jake had his visit with Dad and Jann at the park and he had lots of fun. From there we went to Sophia (Chad's niece)birthday party. Oh, and what fun that was. Jake couldn't keep his eyes of the cupcakes, thankfully we had lots of distractions....sandbox, swings, slide, and most of all the sprinkler! Jake was the last kid in the sprinkler. Think we have a little fish on our hands, which is good because this weekend we are headed to
Wisconsin Dells to an inside waterpark!

Hope all is well with everyone and enjoy the new pictures of the little peanut!

Kellie and Jake

Tuesday, April 24, 2007

Here's a slideshow of our fun weekend! Cookouts, Jake went on the quad, motorcycle and his little Jeep. What a great time! Enjoying life's every thrill!

Saturday, December 23, 2006 9:40 PM CST

Wow! It has been a long time...Our neighbor just hooked up my laptop to wireless internet, so I am able to go online now!! Yes!!
Even better news my beautiful son had another round of clear scans in November!! He is such a Joy! The child is 2 and is a comedian already. Before his 2nd birthday I was truly concerned he would have speech problems, but he had a language explosion shortly after turning 2 and now he tells stories and speaks them clear!!! So proud of him. Jake is complely in LOVE with ElastiGirl (The Incredibles)..Oh my..He even blushes and told me one day that he wanted to hug and give her a kiss. Too much.
We are ready for Christmas. Jake is very excited about presents. I wasn't going to wrap all of his because I thought he would get tired of it, but then we went to my grandma's house and she had bought him some toys and just had them lying out and he was so confused..He kept saying where's my presents at? So now I have to finish wrapping them...The two men are both lying in bed snoring...So much for staying up and watching the Christmas Story and eating popcorn.
Hope everyone has a great Christmas and a happy, healthy new year!!
Thanks for still coming to visit even though I never update...I will try to be better now that I am online..
Lisa, Thank you so much for always signing in and giving Jake the boys clothes! You are a terrific cousin! Love Ya!

By the way, in the picture on this page Jake is holding an ornament from St. Jude's and pointing to the words Hope and Believe!! That is what we did and what we continue to do!!!

Kellie and Jake

P.S.
Just to tell you about Jake's personality..Tonight Chad and I were talking about what Jake will be when he grows up and I said maybe a pro football player..football runs deep in the schwartz veins....Then I thought no they don't really have a nice lifestyle...Unless, he is like a Joe Montanta...And of course, Chad had to say,"Are you kidding me Jake? He would not be like Joe Montanta try more like Jim McMahon"..Oh Lord, and I knew it was so..Jake has that much personality!!

Sunday, September 10, 2006 5:28 PM CDT

Hello!
Sorry it has been so long we just get so carried away with time....Obviously Jake is doing fantastic. He had clear scans this summer and goes back this November.

He enjoys his week days w/Baba. Weekends playing w/Mommy and Chad and the Aunt Titi, Uncle Shane, Ella, Lexie, and Grace.

He is talking up a storm. Such a comedian. Absolutely loves TRACTORS, trucks, pipes....Yes, I said pipes. So, of course, his accomodating Papa used some pvc piping and Jake has a pipe on the back of his bike I bought him for this birthday and on the front of the John Deere riding lawn mower I got him...You should have seen my face when I saw these absurd additions..Only men.

Life is wonderful at this point. Could not ask for anything more. We are all happy and healthy.

Enjoy the pictures!

Friday, June 2, 2006 11:03 AM CDT

Hello All!
Sorry it has been so long...Life had been busy, busy...Good busy though..Jake is absolutely wonderful..Talking, talking, talking...Getting the two year old attitude which is quite funny.
He actually fell the other day and hit the corner of the table and had to have 3 stitches about left eye. Tough man acted like nothing happened.
Having lots of fun though. Went to the pool on Monday with mommy, aunt titi, ella, and lexie (ooie or lou lou) as jake calls her.
Jake goes in on Tuesday June 6 for a clinic visit. Baba and Papa will be taking him. Then he gets his scans on August 9 and 10th.
He is our little blessing and we have been enjoying him thoroughly.
Thanks to everyone who still checks his page we really appreciate all the love, prayers, and thoughts from you all.

Love,
Kellie and Jake

Thursday, March 9, 2006 6:43 PM CST

Good News!
Jake had his port removed and it was like nothing happened..He woke up and was the typical lets go get 'em Jaker. Such a bundle of joy and energy.

He has molar teeth now and he is just getting too big. I really need to bring my camera to my parents house so I can download pictures so everyone can see him. He is absolutely gorgeous. He says please and thank you now. In sign language and words. He is still obcessed with Papa. Big surprise. Everything is going so well, we have truly been blessed.

Just a reminder for anyone interested and for anyone who went last year the Hat Gala is coming up again at the end of April...Last year they sponsored Jake and without their support there is no way I could have payed his hospital bills..The founders lost their son to brain cancer and it is a wonderful organization...You can visit the website at www.hatmixer.com for my info..Any contributions will help the children at Children's Memorial Hospital and any families they are sponsoring.

Monday, February 20, 2006 2:35 PM CST

Hello Everyone,
Just wanted to let you know everything is going good around here..Jake is doing amazing..He has even gone to the bathroom twice on the big potty! I am so proud of the little guy! He wants to do everything adults do...These days Jake spends most of his time obcessing over his Papa...I don't know who is more in awe Jake or my Dad...They are crazy about each other.

This Friday Jake will be having his port removed by the incredible Dr. Reynolds...Looking forward to this as he has been grabbing his chest where his port is located and it makes me wonder if it is bothering him...Plus, it is one more indication that Jake is a normal, every day child again!

Thanks for all your messages, love, and prayers! We appreciate it more than you'll ever know!

Love,
Kellie and Jake

Tuesday, January 17, 2006 10:30 PM CST

Just wanted to let everyone know Jake's scans came back clear!!!! The little bit of tumor they left around his aorta even seems to be shrinking more...Jake's oncologist called me this morning from her house; talk about scaring the bigeesuz out of someone..an oncologist calling on Saturday morning from her home...Thank God it was just good news!

He is doing so well..so proud of my little buckaroo. He tolerated the NG tube yesterday quite well in my opinion.

Thanks for all your support and prayers! Extra special thanks to everyone who signs in..we love it...it is especially nice to hear from family (VICKY) who we haven't seen in forever..

Love,
Kellie and Jake

Thursday, January 5, 2006 10:01 AM CST

Nothing new medically to report..Jake is doing absolutely wonderful. He has popped 2 more teeth. Running like a mad man. Starting to talk a lot more!! Knows what he wants and he will make sure he gets his point across to you.

We are enjoying the new year..Tomorrow, the 6th, is the year anniversary of Jake's diagnosis day! Boy has he come along way.

I have started working at JPMorgan full time and I miss Jake immensely..I actually get sick to my stomach at night knowing I will not see him wake up in the morning..ON the bright side, he is loving hanging with mostly Baba (my Mom) and sometimes Papa.

Our thoughts and prayers are with all of our young friends who are battling illnesses...They're strength and courage is dumbfounding.

Take Care,
Kellie and Jake

Sunday, December 25, 2005 10:26 PM CST

Merry Christmas!!!
We had such a wonderful Christmas and I hope you all did as well! Jake was up until 4 am waiting for Santa?, Papa give him Red Bull while we were away at 11pm Church service? God only knows. Little stinker has never really pulled that stunt..However, he had a fun day..So many gifts, however, he is our biggest gift. Thank you God for our healthy little Jake. He couldn't be loved more.
God bless and hope you all have a safe and fun New Year's. I will put Jake's Christmas pictures up the next time my Aunt Bird comes over. She can reach the USB connector on the computer, I can't. He was too cute today, he had his hair spiked in the front, a button up shirt with a sweater over it..such a stud. I love my guy..


We will update any news from his clinic appointment on Tuesday.

The poem below, I found on another caringbridge page and it took my breath away..this is literally how I feel and I am so glad someone was able to put it into words that we can all understand.

AND YOU HAVE TO VISIT THIS WEBSITE OF A YOUNG BOY BATTLING NEUROBLASTOMA..JUST HIM AND HIS MOM!! THEY ARE AWESOME, INSPIRATIONAL, AMAZING, MY NEW HEROES!
Jay

God Bless,
Kellie and Jake

What its like to have a child with cancer

Picture your child sitting in the middle of the street
Picture yourself in your home watching your child
From the window.
Everything inside you wants to reach out and save them
But you can’t get out, all you can do is watch and pray that
God is watching over them
You see them fall and cry for you to make it all better
But you can’t get to them, they can see you and see your tears
And maybe hear your voice through all their tears.
You pray God will keep them safe.
You hear a car in the distance, but never know how far away it is, some days it seems really close other days even closer.
You know that at an moment that car may come and change your world all over again, in a split second you can be back to were you were when this all started or worse yet, the fight may be over.
Some days you start to feel a little more “safe” and back up from that window, walk over to the coach and sit down, when just then you hear that car again and in a second you are one with that window again, all those fears you tried so hard to put aside are back, more intense this time, feeling guilty for having let your guard down. It makes leaving that window the next time that much harder. We want to keep them close at all times for fear of the unthinkable.
At night when you leave their side to go to bed, you take one more quick peek at them to make sure all is well. You lay in your bed hoping to see them tomorrow, not wanting that day to end, for as hard as it was that day they are here with you, and tomorrow is filled with the unknown, every day, night after night these are our fears. We are exhausted in every way. Our prayers from one night would fill God’s book a million times over.
All you can do is pray to God to spare them, let them be safe.
From that window you see the fear in their eyes, their hopes of the future, such a small child sitting their all alone, surrounded by love, but alone ,fighting so hard, not wanting to let you down, for they are very smart, they know our sorrows.
Seeing your child sit there ,wanting to help with all your might,
But knowing in the end its them and their bodies that must do all the work, so much to ask of such a little person.
You’d never let your child sit there in the street, knowing that they could be taken from you at any moment, you would not just sit there and stare at them and pray to God to save them, you’d pick them up, wrap your arms around them and hold them forever, keeping them safe.
Yet that is what us parents of children with cancer are asked to do every day. Let them sit there and watch and wait and pray, pray hard.
Yes, I believe in God, but that doesn’t stop my mother instincts to want to do something to help them.
How do we put everything we learned as parents aside, and simply hand it all over to God? How is it decided which child shall live and which child will pass on? Why is it that some children struggle so very hard and win their battle only to have it it return with much more vengeance? Why do some children sail right through their treamtent and then die suddenly? How are we to make sence of any of this? With each clinic appt. brings the possiblity of a relapse, no matter how great they look or how wonderful they feel. If only we could judge their health by the way they look on the outside.
We are suppose to protect them, to keep them safe from harm, who said cancer could make all the calls? I never agreed to that, I am their mother and I will fight for them, with every ounce of my being.
Cancer may be calling the shots, but it will not win this game, not with my children, not with any of our children, we are so very weak, but so very strong, this bravery we have we get from our children, our little heroes, fighting every day with all their might…
Pray for them…………

Friday, December 23, 2005 10:51 PM CST

Happy Holidays Everyone!
Hope this entry finds you all doing well..Our sweet Jake is amazing as ever. Our spirits are definitely higher than the last entry..Only positive energy from Mom this time. We have not heard anything in regards to his catecholamine levels (which is odd), however, I assume no news is good news. We go back to clinic on the 27th of this month.
We are getting very excited about Christmas...Jake is getting a kitchen set and a race track from Santa. The kid is Emeril Jr. No joke. He can sit and "cook" for hours. He is so goofy. What a personality he has. He laughs all the time now and loves telling stories (we have no idea what he is saying but we know he is very serious). He will point his little finger and give it to us and then start dying laughing and put his hands out to the side like can you believe it! Such a ham.
Well, I am going to try to upload some different pictures for you guys!
Take Care and God Bless,
Kellie and Jakers

Friday, December 2, 2005 11:04 PM CST

Hello Everyone!
I hope you all enjoyed your Thanksgiving. I know we did. We had alot to be thankful for this year..Most of all though it was the beauty of the children in the family. Jake's remission, our sweet baby Grace was born (my niece), Ella (my four year old neice) has begun to read, and our sweet Lexie (three year old neice) starting school and fastly becoming the teachers best pal, and my nephew in law Ayden had surgery on his little ears and is doing wonderful, plus he will be a big brother by the end of this year! The many blessings of little ones.

We are looking forward to Christmas! Baba (my mother) already has presents out (the woman is a fool for Christmas) and Jake is already showing interest in unwrapping them so Christmas morning is sure to be a big hit for the little guy.

With all the excitement going on around us all we were slapped with reality again this past week as we went to clinic on Tuesday. Going to the Oncology Clinic for some unknown reason has never really tramatized me, however, this time it did. It is a living nightmare. I think I have been in some sort of foggy haze the past 11 months and never saw the clinic for what it really was...All of these beautiful children are there for one reason...they are battling a life threatening disease! How wretched! For the first time I saw and felt the fear of these little ones..A little girl no more than 3 years old sitting next to us crying to her Mom because she did not want them touching her back (spinal tap). Another little boy holding onto his Mom for dear life as he was called back. My own son throwing a tantrum and crying when we had to leave the play room and go back for his check up. It was awful..All I have thought about since Tuesday is oh my goodness what if Jake relapses..How in the world is he going to handle that all over again. I don't know how we would do it...I don't know we did it the first time. Thank you God that he was so young. Then I think I can't lose my Baby he has become my best pal, my life. Reality has sunk in. My emotions are back and I don't like it. The fear is back and it is so strong. Thank God for friends...I was talking to one of my best friends who has such a strong faith in God and she's been there since day one and she always says the right thing, "Well, Kell all you can do is give it to God and trust in the gracious Lord". She is so right. Please keep praying for our little ones. They are so young and so precious. They deserve to be happy and healthy. I have realized that even when Jake makes it past the 5 year mark and is truly in remission, he still won't have a normal life..the poor fella will still have to come back yearly for a battery of tests. This means a week of poking and crying. But I can't complain because at least he'll be with me, but I just wanted it to be different for him. No parent likes to see the look of fear on their child's face and being a parent of a child with cancer you know that you have to see that look too often.

I'll stop my pity party and give you happy news. His visit went well. His oncologist feels his belly is shrinking. This means his muscles must be coming together more since surgery. He is meeing all of his milestones...I personally am worried about his speech..So I am going to have him evaluated. He only says Mom and I don't want him to struggle with speech later on; he will have enough battles in his life. We should have the results from the urine anaysis next week. Pray for normal catecholamine levels. If they are elevated that means the cancer is back somewhere. His next visit is in a month and then he gets his next CT scan and MIBG in February. Sometime between now and then they think they are going to remove his port..complete bummer. I love that thing! No IV's, just one quick poke and he's good to go. Jake being the thick little guy that he is has a terrible time getting an IV so I am not looking forward to that. However, it also means getting back to normalcy.

Hope you all are doing well...Look at the pictures I put more up....And also please click on the names below to visit the sites of two handsome boys who are battling cancers..

This little guy started radiation today. God bless him and his family..They really struggled with this decision and trusted the Lord to guide them to Trenton's CURE!

Sweet Trenton


This beautiful young boy has been through the ringer and keeps on fighting! A true Hero!
Amazing Jacob

Love,
Kellie and Jake


The Strength of an Egg

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.

Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.

by Juliet Freitag

Thursday, November 24, 2005 7:32 PM CST

FINALLY NEW PICS! HAPPY THANKSGIVING!!

Friday, November 18, 2005 1:13 PM CST

Hello Everyone,
I thought I would quick update before my 7th hour kids come in. There has been no new medical news on our Jake. Thank you God! However, he is undergoing many changes. Jake now has the most beautiful four front teeth I have ever seen. He is dancing like a wild man. I wish you could all see his moves. He dances like his Papa. My parents have a dancing and singing Santa Claus up in their house (yes, it is a bit premature, however, many of you who know my Mother realize her obcession with Christmas) and Jake has taken a few moves from him and loves to go turn him on and dance for everybody. We enjoy every minute with him..I have had to remind myself at night when I'm tired and have work to do and he will not go to sleep and I get cranky to stop my crankiness and remember that it is a blessing from God that he is even here with me. Jake also loves running around with his arms out to the side pretending to be an airplane. He is just truly amazing. It is so neat watching him become a toddler. I'm trying to think of all the funny moments we enjoy with him, so you can to. He also loves running away from us when we are trying to change his diaper, or get his coat on, or do anything to him...He's a fast little bugger.

I am hoping to update his pictures this weekend! You all have to see how adorable he is. He gets cuter by the second...

We go in on November 29 for blood counts, physical, and a urine analysis to check on his catecholamine levels. If low, still no sign of cancer (that's where they were after surgery)..So let's pray they are still within normal range!

Thanks for coming to see his page even though I have been so terrible lately with updating the journal and pictures..I promise to put forth more effort into this in the future!

Love,
Kellie and Jake

Thursday, November 3, 2005 12:21 AM CST

Quick update:
JAKE'S PRELIMINARY RESULTS SHOW NO CHANGE!! THIS MEANS CLEAR SCANS!!! NO CANCER!!! YES! WE GO BACK IN FEBRUARY FOR THE NEXT BATCH OF SCANS! THANK YOU FOR ALL THE PRAYERS AND THOUGHTS! THE BUDDY HAS PULLED THROUGH AGAIN!
LOVE,
Kellie and Jake

Wednesday, October 26, 2005 8:17 PM CDT

Hello All!
I feel like it has been an eternity since I have been online! Everything is going well..Jake is the picture of health these days...Outside of battling colds like every other kid. His upper front teeth are coming in and oh are they funny! They remind me of chicklets! Crack me up. I seriously think his teeth are adult size. It is so funny. I have a disk full of pictures at my house, however, I am updating at my parents house right now. I will have to post pictures soon because he is looks like a little boy now.
We are so excited for Halloween! Jake is going to be a Nascar driver..We wanted him to be the Hulk but they did not have costumes in his size. He loves cars, so we thought this was perfect. This way if he gets tired, we can push him around in his cozy coupe convertible(aka his race car).
Jake has been spending his days with Baba as I am working possibly until Christmas as an 8th grade math substitute..Interesting. I miss him so much, but I know I have to work and he loves his grandma so it all works out.
We are going in for his scans next Tuesday (Nov. 1) please keep him in your prayers!! His stomach is still bulged out on his left side, so I am constantly terrified that it is a tumor. We love you all....
Anyone who has called or wrote messages or sent Jake things, please be patient with me...Return phone calls and thank you cards will be done at some point or another..Right now there are not enough hours in the day..I get home from work, play with Jake, put him to bed, take a shower, and then do at least 2 hours of grading papers and lesson planning! Not used to this schedule yet!
Love,
Kellie and the Incredible Jake

Tuesday, October 11, 2005 3:28 PM CDT

Hello All!
Sorry it has taken so long to write again..We have been very busy. I am back to substitute teaching. As of last Thursday it seems I may be in the 8th grade math room until Christmas. Fun stuff. However, this means time away from my little comedian. Full time subbing means lesson plans, projects, grading papers,etc.. However, Jake is enjoying his time with Baba. She (my Mom) watches him every day while I work..What a Godsend.

Jake went to two different pumpkin patches this weekend. He loved it. I took pictures which I NEED to put on the website shortly. He is so absolutely adorable! He looks like a little boy now..His hair is longer, I can actually spike it. He has his bottom right tooth coming in and his two front top teeth are popping through and he is RUNNING around like mad! What a joy! He knows how to blow kisses and give kisses now..And he gives the best hugs in the world! Can you tell I miss not being with him every day?

We go for another CT scan at the end of the month. We met with his oncologist last week and she said Jake will be getting scans every 6 weeks instead of every 3 months because of the residual tumor left on his aorta..Oh well..as long as they come back clear!

We love you all!
Kellie and Jake

Tuesday, September 27, 2005 11:40 PM CDT

Hello~
Ok, I am about to throw this computer out the window...I just wrote a long entry and somehow lost it...Ug..Just want to go to bed...
So I'll make it quick..Jake is doing amazing as usual..Has a little cough, just got over strep, and he is cutting his bottom, right central incisor! YEAH!! Finally a tooth!
Went to Culver's today as they were giving 10% of their profits to Neuroblastoma research! Jake's pediatrician invited us out to lunch! How sweet is that? Jake loved it up..

However, I have my list of amazing children who need lots of prayers..
Christopher: nearing the end of his journey...fighting with every ounce of his little body. View his guestbook and hear the song they sang at the Hat Gala in April..He is My Son..I lose it every time I hear that song..

Trenton: Starting bone marrow transplant two tomorrow..Wednesday morning..He is a litlle guy and those are some pretty strong drugs for a little fella. He will be in the hospital for a month! I have fallen in love with this sweet family..please visit their site and pray for his CURE as he too is battling neuroblastoma..

Jacob: Started his chemo this past week...poor guy has been in the hospital for 55 days straight and is finally breaking down..tough guy..I would have cracked a long time ago..not to mention Mom has three other boys she is missing at home..Jacob is 1 of a set of triplets!

Donovan: This is the cutie who reminds me of my Jake...He is in severe pain from chemo and the morphine isn't even helping him..Pray for his pain to stop!! God bless that Mom..I would totally be pulling a Shirley McClain(think that's her name) in that movie (can't remember the name of course) where Debra Winger is her daughter dying of cancer and Shirley is running around the hospital floor yelling at the nurses to do something to help her daughter's pain. I would totally get thrown out of the hospital.

www.caringbridge.org/wi/christopher
www.caringbridge.org/ga/trentonsjourney
www.caringbridge.org/fl/jacob
www.caringbridge.org/in/babydonovan

And, of course, please keep my Jake in your prayers..keep the clear scans coming!! We go in next week for an echo on his heart and a hearing test...just making sure the chemo has had no side effects yet..I know his hearing is perfect..the kid hears everything! Thanks for listening!
Love,
Kellie and Jaker

Sunday, September 18, 2005 5:16 AM CDT

Hello Again!
Sorry I have not updated in so long..We were busy all week and then Jake decided to end the week with a big bang! Friday morning around 4 am, I woke up and Jake was breathing funny, heart rate racing, and hot as hot can be..I took his temperature or I should say tried. He freaked out, so I had to take it out from under his armpit and it already hit 101..YIKES! Now his cousins have been sick for over a week with a high fever, ear infection, and bronchitis, so I was not too concerned. He had not been around them, but you know how illness rips through a family. Gave him some tylenol and we laid back down..I couldn't sleep until his fever broke, which it did around 5:30. So we woke up around 8:30 and this time he was hotter then ever. Called Baba and Papa to get their ear thermometer since it is a fast reading..what do you know 103! He was not Jake either..Did not want to move. Only wanted to snuggle and eat frozen grapes. Called his pediatricians office when they opened, they said to come right on in..Dr. Singer looked him over said he had an ear infection and a very mild upper respiratory infection..gave him a further exam..felt the little fella's testes and felt he may have a hernia..ok..time to call the pediatric surgeon..Dr. Singer got a hold of Dr. Reynolds and she said be at Children's at 1pm so she could look at him. Plus, Jake's tummy was bulging out a little on his left side where his surgery took place..Off Jake and I went from the physicians office to Children's. I'm telling myself we can handle a hernia..he beat cancer. We get there. After the reception ladies try arguing with me that Dr. Reynolds will not be seeing patients until 2:30, the incredible Dr. Marleta Reynolds herself appears and says you are not going anywhere come back in a room with me..She and her fellow, Dr. Abramson, took one look at Jake's stomach and said forget about the hernia we need an emergency CT scan done of his abdomen I don't like what it looks and feels like...OUR WORST FEARS HAD SURFACED!!!!!!! Then she said the dreaded words, looks like a tumor grew back. She said she couldn't be sure by feeling it if it was a tumor or fluid...I said it can grow back that big, that fast..YEP!! HOLY BANANAS! Ok, so we go to radiology and after what seems like forever, we get called upstairs..The prep area for scans is swamped!! Of course, some of these nurses have been with Jake since day one of our journey so they absolutely love him..They wanted to know what in the world we were doing there....time for Mom to completely lose it. "They think he relapsed." All I could muddle out before I completely broke down. They start crying..You see with neuroblastoma a relapse ususally means start praying harder than ever and hugging your child because time is running short. Jake by the way has been screaming this whole time because the little fella doesn't feel good and he is terrified of the hospital..So there is mass confusion on whether Jake is being sedated because evidently before we arrived Dr. Reynolds had came upstairs and said or yelled get that baby on the table NOW! Well, Jake had been eating so to sedate him we would have to wait a few hours. After much confusion and tears they figure out there is no time for sedation because they are calling him to the table NOW! The little guy had just fallen asleep on me..Now he was poked and strapped down. They do the CT scan, draw some labs since his fever was so high and send us back down to see Dr. Reynolds..Jake and I pace...In walks in my old pal, Sara! With a bag of frozen grapes for Jaker. Thank the heavens..I was not prepared to get this news alone! You see it was Grandparents day at Ella and Lexie's school so my parents were there and there was no way I was going to pull them away from the girls again! However, once they found out Papa came racing to the hospital, but let's get real about Friday afternoon traffic on the Kennedy. As soon as Sara arrived we were called back, to yet again pace the hallway. We turned around and there was Dr. Reynolds and crew walking towards us..Oh Dear God no..not my baby was all I could think...then she smiled and said it looks great!!! Sara and I both lose it...Dr. Reynolds smiles puts her arm around me and says, "Lisa (her fellow) said Mom is going to cry again." Funny. Even the surgeon was terrified as she commented that she would be able to sleep tonight..She said he was full of poop and some fluid. Thank you again Lord! She said his scan actually looked phenomenal! BREATHE!!! We begin walking out of the hospital and there is Papa walking in looking terrified. We tell him the great news..RELIEF! Make a few phone calls, eat some Potbelly's and Jake is back to his old smiley self again...Thank you, thank you God.. He was so sad in the hospital it was breaking my heart. Needless to say, Friday sucked. However, in the end we could not complain, only rejoice that our little fella was ok. I had just got the image of tiny coffins (no joke) out of my head and replaced them with images of Jake going to preschool wearing a backpack that's bigger than him. There were too many lunches I had not prepared for him, too many kisses and books to be read, I was not prepared to let God take him back yet. FROG Got that from another caringbridge family...Fully Rely On God...It's the truth.
For the time being Jake is back home, currently sleeping peacefully!!!

Thanks for letting me ramble..Now I want to quick say thank you to Sandee Dunker who made me the most precious, beautiful bracelet ever! I never take it off..Thank you, thank you..It has Jake's name on it and a cross..I am not good at describing things in great detail, but it's amazing. You have been so kind throughout our journey and I will never forget it. Also, thank you to Zion Lutheran School who surprised us with an envelope with money in it that they raised in the library (Baba's old stomping grounds) for Jake's Fund. Too many of you have been good to us, I am working on Thank You cards, which I am bad at anyways, but with everything else to do and get done they are held up even more...I promise I will get them out one day..but know for now, that I say THANK YOU to everyone for the prayers, support, and gifts...It really does help..Friday was a quick reminder that the next 5 years are going to be touch and go. So forgive us for not returning phone calls or sending thank you cards or not wearing make up ha ha.

Please keep another family in your prayers, Baby Donovan's family as he did not go into remission and Mom is afraid his chances of beating leukemia are growing slimmer. you can send them words of encouragement or just look at his site at www.caringbridge.org/in/babydonovan Keep praying for remission!!

By the way, Jake has had no sign of a fever since Friday evening..Is he tough or what?

Take Care
Kellie and Jaker

Saturday, September 10, 2005 10:11 PM CDT

Hello Everyone,
Jake is doing amazing as usual..However, tonight many children and families are not. Anyone who attended the Hat Gala in April will remember the beautiful boy, Ryan, who was also honored that night. Well, he lost his battle with brain cancer on Thursday...I just found this out today and it is absolutely devastating. I can't imagine what those parents are going through..Everytime we saw Ryan in clinic he was ALWAYS smiling. Please keep Ryan and his family in your prayers....I have also been looking around at other sites and have found that within the last two weeks I have read about 6 children dying! I have not looked at that many sites, so this is a huge number. I do not understand why this happens. One of the children, Avery, died yesterday. She was 5 months old..I just read her page about an hour ago and I still can't stop crying. If you have the strength you can read her site www3.caringbridge.org/ny/averysheart She had the most beautiful smile. If you can handle it, maybe write a note to her parents in the guestbook so they know just what a profound impact their little girl had on this world in her 5 brief months. Also, another little boy Christopher is battling for his life right now in Wisconsin. www3.caringbridge.org/wi/christopher please pray for his pain to stop and check out www.caringbridge.org/fl/jacob he too is fighting cancer and is having a difficult time...This is only a few pages, but they really seem to need lots of prayers right now..and check out baby Donovan he is so beautiful!! He reminds me of my Jake...www.caringbridge.og/in/babydonovan
Keep our dear buddy Joey in your prayers as his little body fights neuroblastoma...I know him personally so I can say he is a figher like our Jake! I look forward to a time when they are both cancer free and his mother and I can sit back and say WOW isn't it amazing what they went through as little guys. I will stop with my sad ramblings and let you all free to check out these sites......
Send you off with a smile....Jake walked most of today!!! It's a treasure to see him stumble along! I will try to post new pictures soon..He looks so different every day..more hair, losing a little baby fat, and brightening that wonderful smile!!!
Love,
Kellie and Jaker
P.S.
Thank you for ALL of your thoughts and prayers!! You will never know what it means to our family. Going through a difficult journey like we did can make a person feel very isolated, but your thoughts and prayers reminded us that we were never alone!

This is a beautiful poem I just came across!


The Chosen Mothers
by Erma Bombeck



Most women become a mother by accident, some by choice
and a few by habit. Did you ever wonder how mother's of
children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth
selecting His instruments for propagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless
with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for
granted. She will never consider a single step
ordinary. I will permit her to see clearly the things I see....ignorance,
cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Tuesday, September 6, 2005 7:27 PM CDT

Hello Everyone!
I thought I would let you all know that I am enjoying life as a regular little fella! This weekend we celebrated by doing everyday normal activities...Saturday we spent most of the day at my Uncle Shane and Aunt Gigi's house. I got to play with my cousins and watch Uncle Shane and Papa assemble the girls new play park...ha! Then on Sunday we went to Baylee Davis' 6th birthday party!! Mommy brought me around other children without being terrified of me getting sick..She let me crawl around outside and have lots of fun..Then yesterday we went to Aunt Gigi's cousins house because they have an inground pool and I have NEVER been in a pool! Well, I really didn't go in one yesterday either because I was a little scared. However, I was able to sit next to it playing with water and buckets for about 4 hours!! I have never been outside for 4 hours in a row!! Mommy and Aunt Gigi made sure I had a constant supply of sunscreen on and my hat, but it was great!!! Needless to say, I am a little tired tonight. Mommy was out running errands and I took a 3 hour nap for Baba....It's part of my plan to make sure I am always on best behavior around my grandparents because they think I'm flawless! Well, thank you all for the prayers and support..and please keep them coming....our friend, Joey, who is also battling neuroblastoma is receiving experimental treatment until the end of January so please keep him in your prayers! Especially the next two weeks as he and his Mommy are in the hospital actually getting the experimental drugs..He was my first roommate and will forever remain in our hearts!

Love Ya,
Jake

Friday, September 2, 2005 4:25 PM CDT

Hello!
I hope you are sitting down....Our little guy is done with treatment!!!!!!!!!!!!!!!!!!!!! We got the news yesterday afternoon. He will have a follow up CT scan in a month and then every three months. We could not be happier! Thank you God!! And thank all of you for your prayers and support. We could not have done it without you all! We still have a long five years of waiting ahead of us, hoping he does not relapse, but we will have to put that in the Lord's hands. We are so blessed!!
Love,
Kellie & Jake

Tuesday, August 30, 2005 10:43 PM CDT

Hello Again..
I was uploading new pictures and thought I would check in..Jake is doing wonderful/cranky...Think he is finally getting some teeth..we go back tomorrow for the dreaded CT scan..He gets a feeding tube put in while he is awake with no meds, so it is pure misery for the little fella...we will keep you updated on any results we get back...please check out the new site I posted on the bottom of the page. It gives great ideas on how to help fight this terrible disease, even if it is just writing the Congress. Take care.
Love,
Kellie and Jake

Saturday, August 27, 2005 3:56 PM CDT

Hello All,
Well Mr. Jake is doing wonderful. And you will never belive it, but the little fella took a few steps this morning!!! Hopefully, he will be running in no time. Still no teeth, but that's ok.
Hope everyone is doing well and we will keep you posted with the results of all the tests this week!
love,
Kellie and Jake

There's another website about a little boy who is currently losing his battle with neuroblastoma over in Europe. It's a beautiful, yet disturbing site. However, the family needs all the prayers they can get right now so please check it out...www.beebo.info

Monday, August 22, 2005 4:58 PM CDT

Hello,
Well, I spoke to Jake's nurse this afternoon and she gave me the scoop on all of his upcoming tests. On Monday, the 29th, he will be having his MRI. On Wednesday, the 31st he will be having his CT scan and MIBG injection, and then on the 1st he will be having the MIBG scan. So I am thinking we will have results the following week. This means hopefully only two weeks of waiting left! Hang in there with us, we are almost there!
As for our little guy Jake, he is doing superb! He is starting to take little steps again, so we are hoping he will be running in no time. He is almost like a new child. His feet are no longer swollen. It seems as though he moves around better. I can't imagine what it would feel like to have something the size of a soccer ball (Jake's was the size of a baseball, so I'm guessing in comparison to us it would be about the size of a soccer ball) in me and then the next day gone. I know it is a relief on his diaphragm because he is speaking all the time now!!! Before he really didn't babble much and he did alot of grunting...Now he is all laughs and babbles! He is truly a blessing. We love him so much and it is so very wonderful hearing how everyone else shares the same feelings for him. Hope you all are doing well...Thank you so much for your support!
Love,
Kellie and Jake

Tuesday, August 16, 2005 6:40 PM CDT

Hello again!
Well, we met with Jake's lovely surgeon, Dr. Reynolds, and her fellow, Dr. Abramson, today. Dr. Abramson removed all the tape on Jake's back and they both think it is healing beautiful..Pretty scary looking if you ask me. However, he is free to have tubbies now! Thank the Lord, he was becoming Mr. Stinky. Just kidding, my baby never smells. Dr. Reynolds also commented that she had read over his pathology and she felt that we got the best possible report back! She said there was just a tiny amount of neuroblasts left and that any further treatment would be to just clear up the remaining cells in him. They were happy which makes me happy because Dr. Reynolds had never steered me in the wrong direction. I wish you all could meet her and her whole team (all women might I add) they renew your faith in medicine. I will forever be thankful for this woman coming into our lives. That's it for now. Going to go back by Jake, he is currently in the kitchen cooking away with Baba. They are making cookies for the Fire Department!
God Bless,
Kellie

Monday, August 15, 2005 4:50 PM CDT

Hello,
Well, it looks as if we have another month of waiting! This is becoming so frustrating. I just spoke to Jake's head oncologist and she said the pathology came back with most of the cells being mature(this is a good thing I guess) and some still being active cancer cells. What they will do now is repeat an MRI and MIBG test in 3 weeks to quantify how much of the tumor still remains in him. If it is less than 10% of the original tumor they will leave it alone and just do standard check ups every three months..however, I guess if more than 10% of the original tumor remains he will be undergoing radiation..Too confusing for my mind to comprehend now. Last week we were told if there was just 1 active cell they would be doing radiation and now that seems to have changed. Who knows..We go see Jake's surgeon tomorrow for a follow-up and hopefully she will be able to make better sense of all of this! Thanks for being so patient and please continue to do so as we will have a long month ahead of us waiting to find out what the next step will be!
Love,
Kellie

Sunday, August 14, 2005 8:46 PM CDT

Hello Everyone!
Just wanted you all to know that I have had my best day since surgery! I woke up late today, somewhere around 10 am and immediately jumped on the tractor with Papa..then I ate some food, played, drank a bottle with Baba, and then jumped back on the tractor with Papa (he sure likes that tractor, he was on it all day), I guess I fell asleep when I was on the tractor because the next thing I knew I woke up a couple hours later in my Mommy's arms. I woke up and played, ate some food, went back on a ride with Papa, went for a ride in my wagon, then I jumped on Papa's cool Case Crawler with my Baba. I was really sad to see Papa put it away, so he took me on his BIG tractor..then we came inside for dinner..After that we went to Mr. Freeze for some treats and I am now currently playing with my Papa in the family room because I like to fight sleep...I love you all..keep up the wonderful prayers, they work wonders..I feel God's love all around me everyday day!
Love you all,
Jaker

Saturday, August 13, 2005 7:11 PM CDT

Ok, I am officially on my first corvette ride with my Papa right now!!!!! I was having a rough day after my little nap, so I went on a tractor ride with Mommy and then with Papa and then a stroller ride..well, I still wasn't happy enough so Papa brought out the big guns! I sure was giving Mommy big smiles when we were leaving the driveway..Don't worry Papa turned the passenger air bag off. I can't wait until he gets a new Z06. We will really be able to rip it up then.
Love,
Jake

Friday, August 12, 2005 5:59 PM CDT

Hello Again!
I am currently alot happier than last night...I have been going on tractor rides with Baba and Papa for the last two hours! I am so lucky. Last night I was crying so much that Mommy called the hospital and made them give me more pain medicine..my wonderful baba went to Walgreens at midnight in a terrible storm to pick up my pain medicine..i sure love her. And my papa held me in his arms until I fell asleep..I have the best family ever! So far we have not heard whether my tumor had live or dead cells...however, the oncologist told mommy that no news is good news..we will keep you all informed.
Love,
Jake

Thursday, August 11, 2005 9:43 PM CDT

SURPRISE!!! I'm HOME! I'm a FREE MAN!!!My chest xray showed that the air bubble thing was shrinking so they said to get out and go home...I am currently pretty irritable, but it's just because those darn people wouldn't leave me alone for days, so now I'm having a tough time adjusting to home life..I love you all. Thanks for the prayers. You all must have said alot because I even got to come home a day earlier than expected! THANK YOU SO MUCH!
Love,
Jaker

Thursday, August 11, 2005 3:57 PM CDT

Well everyone we had our first minor set back today..They did a chest xray this morning after they removed his chest tube to check for any air pockets that may remain. Unfortunately, Jake has one that is by his lungs, so they have to repeat the xray at 5pm. If the pocket is bigger, they will most likely put him back under and put a chest tube back in place. Not what we wanted to happen, but we have too much to be thankful for to let this get us down. Looks like we will not be going home today, but when we do it will be a blessed event..Jake has such a hard time sleeping in the crib alone! We will try to update later...this place closes at 8:30 so we can only do so much!
Love,
kellie

Thursday, August 11, 2005 11:04 AM CDT

Alright everyone I'm back..That's right I'm channeling my thoughts through Mommy again because I am feeling so good..Baba was right, I got food yesterday and a bottle! That was a sight for my hungry tummy. I had a little hard time sleeping last night because I am so used to sleeping with Mommy. Around 4am Mommy finally got the hint and picked me up and placed me next to her and I had 3 hours of good sleep! Then the surgeons came in and ordered that my drain tube come out!! Within two hours 2 nurse practioners came and took it right out of me. I was so brave, I didn't even cry or shed a tear. Mommy says I am the bravest, strongest boy in the world. Once that darn thing was out, they took out my IV for fluids and all of my chest leads so now I only have two tubes (my port and my pulse-oxygen monitor) and they are pretty short so I got out of the room for the first time around 10am this morning..It was the same time Baba and Papa walked in the room..I was eating my eggs and sausage and then my buddies walked in so we all went for my first stroller ride..I was bummed because they told me no burn outs in the hallway..That's okay because I was so excited to get out of the room and see people. I was talking up a storm, laughing, pointing at things, and bouncing around in the stroller. I put on quite a show. I had a crowd of about 6 nurses and doctors around me. Well, I love you all. Thank you for all the prayers, they really make me and my family feel better!!
Love,
Jake

Wednesday, August 10, 2005 12:37 AM CDT

Hello everyone!
Wow! Jake's courage and strength never fails to amaze us! This little guy woke up around 8am (mind you his last morphine was given at midnight, so it had worn off already) and rolled over and started to crawl in his crib!!! My goodness...He didn't even whimper, but I freaked out and picked him up right away because I did not want him to hurt himself..God has blessed us with such a strong baby. He has the will to survive and I believe he is going to come through with flying colors! Jake's surgeon is coming to see him this afternoon and possibly take out his draining tube and then maybe give Jaker some food..He has to be famished as he has not ate since Sunday and as you can tell be the pictures he loves to eat..
We love you all and special thanks to Pastor Borhart and the new Vicar Jeff I believe is his name as they came by for a visit this morning and we said a special prayer for our sweet, sweet boy.
Love,
Kellie

Tuesday, August 9, 2005 9:58 AM CDT

Hello everyone!
Jake is obviously out of surgery. He is currently having a rough time. However, yesterday he did wonderful! His surgery ended around 2:30 pm and we were able to see him shortly thereafter. Dr. Reynolds was able to keep him stable throughout the surgery so he did not have to go to the ICU!! She was able to remove most of the tumor, the only part left behind was the small area or crumb as Steven would say, that is on his aorta. His incision is only a few inches and it is mainly on his back left side. Not too bad. We should know the pathology (dead or living cells) of the tumor within days.
Jake has a feeding tube, a catheter, a chest tube to drain the fluids from the surgery site, an IV, leads on his chest to monitor his heart, a pulse-oxygen lead on his foot, and a blood pressure cuff, and his port is accessed...SO many tubes! I was only able to hold him for a short while last night because of all the tubes and he is still so sore..He jumps if you touch him and he is currently having the hardest time settling down. He is starting to really wake up and is realizing all the pain he is in and how uncomfortable all the tubes are.
Last night or I should say early this morning, he was running a fever so they wanted to put tylenol through his feeding tube and this is when they discovered it was kinked in his sinus cavity, so then they had to remove it and put a new one in...Poor little guy did not apprecitate that..Not to mention the surgical site is draining all over, so they keep reinforcing it and you can imagine how painful that is for the little fella. What a night! They day the first day is always the worst, so things will only get better for him!
So many thanks to all of you for praying for Jake..God answered all of our prayers and his surgery really was successful even though she had to leave that "crumb" on his aorta...My faith is growing stronger by the minute that he will be ok..I apologize for not updating yesterday, but it was a whirlwind! Everyone coming in and out and it was just crazy as you can imagine. Baba is with him right now. Daddy just left after a visit and Papa is around here somewhere..He is so loved. Please keep up the prayers as God is listening and answering them.
We love you,
Kellie and the rest of Jake's Family

Monday, August 8, 2005 10:45 AM CDT

Hello Everyone!
I am in surgery right now. We have had one update. Dr. Reynolds is in and she said everything is going good so far. She did mention this morning again that she would not be able to remove the tumor on my aorta, so start thinking radiation...ug...However, everyone is here for me...My Mommy and Daddy, Baba, Papa, Cindy, Great Gram Jean, Uncle Pat, Aunt Bird and Hope..and there is more coming..I am so lucky..I love you all.

By the way, I had the best 1st birthday party ever Saturday...There was a John Deere tractor that was HUGE..So many thanks to the Gieseke's and we had firemen there who let us play with the hose..It was the best! Got to go!

Friday, August 5, 2005 8:18 PM CDT

Well, this time it is Mommy writing in today. I spoke with Jake's surgeon this afternoon. She is a wonderful woman, Dr. Reynolds, and I have complete faith that she will have a successful surgery on Monday. She will begin the operation at 8:30 am...She left her whole day open for Jake so she could take her sweet time. She said it would be a minimum of four hours, but she wasn't too sure it was going to be that easy so she is planning on the entire day. Here's what she is planning on doing. Since the majority of Jake's tumor lies behind his organs and goes through his ribs to his back, she will be making an incision on the left side of his back (where his original incision from the biopsy was) and extending it around his side. This means no abdominal cutting!!!!!!!!!!! She will lift his diaphragm to get to the spine and move his ribs to get to the majority of his tumor. The bad news is that the tumor is still on one side of his aorta. This means those cells will be left behind. It is too risky to remove cells around his aorta because of the major risk of bleeding...remember the aorta is the large vessel which supplies blood to your entire body...Pray that the cells are dead! If there are still live cells, Jake will need radiation...I don't even know if they can perform radiation on someone's heart. Once Jake is out of surgery, Dr. Reynold's is hoping to keep him stable enough that he will go straight to a room on the fifth floor. However, if needed he will go to the PICU (pediatric intensive care unit) on the second floor. She said he will be there at least until Friday. And his stitches will all be inside and dissolvable. She said he will be groggy and cranky the first few days, but then should get back to being the same old crazy Jake afterwards.
On a lighter note, I want to say thank you to everyone who has signed on. It has meant the world to us. We plan on printing out that page and putting it in a book for Jake. Your thoughts and prayers are what get us through each day. By the way Vicar Ayers, you are missed more than you can imagine. We never thought we could love someone like Pastor Borhart, but you stole our hearts and will be greatly missed. I hope your new congregation realizes the gift they have received in you. Miss Trah, keep that desk open for Jake because he will be there and I am sure he will have your June Box filled before Christmas. We love you all! Keep the prayers coming as Jake needs them more than ever right now. Speaking to his surgeon made me realize he will truly be fighting for his life if those cells come back live. She definitely made a point to say how deadly this cancer is. So if any of you love giving to charities, please think about a neuroblastoma charity there are so many out there. There is very little money each year given to pediatric cancers and neuroblastoma gets a small portion of it. We need all the help we can get to save these precious children who all deserve many tomorrows and so many of them are robbed of having tomorrows. In fact, I will be putting a link at the bottom of this page of a great foundation who will be giving all their money to neuroblastoma research and they even specify which research they are giving their money too.. Their son, Jake, passed away May 27 of this year from neuroblastoma. They called him SuperJake and he truly was. Please look at their site and keep his family in your prayers also. For some reason he has stolen my heart and I think of him and his family every day..They are having a Super Heroes Ball this year and every year following on November 3, their son's birthday. It sounds like a beautiful event and I plan on being there if possible. Thank you all for your time and prayers!
Love, Kellie

Sunday, July 31, 2005 11:03 AM CDT

Hi Everyone!
Just wanted to say hi to everyone! I have no new medical news, which is probably a good thing....I still am going in for surgery on the 8th so please keep praying. For now I am just enjoying life..I am loving taking at least 2 tubbies a day. I am trying to walk, I just don't have enough confidence yet. Baba and Papa gave me an early birthday present, an all terrain radio flyer wagon! I love it...I even helped Papa and Uncle Wade put it together. Love you all...I need to get back to playing..Jake

Saturday, July 23, 2005 6:36 PM CDT

Hello!
Okay, I am done with all of my big tests!! Yippers! Mommy talked to my surgeon the other day and she is going to be out of town next week so they scheduled my surgery for August 8th....Are they crazy? That's my first birthday. But mommy tells me that my best birthday present will be given to me that day-LIFE! The doctor said it is going to be an extensive abdominal surgery...whatever..all I know is that they said it will be an all day surgery, so I get to sleep alot that day. My tumor has shrunk a little more, but there is still quite a bit left in my spine, back and abdomen. Keep on praying and say special prayers that Dr. Reynolds will be able to remove my awful tumor. Really pray that the tumor turns out to be dead cells and no longer cancerous. I love you all...I am currently getting a great tubby given by my Baba..She sure loves me and I sure love her a lot. She is always up for playing with me and making me laugh! I am channeling my thoughts to my Mommy...Love you all...Oh yeah, I think I may be getting a cold or else I am having a really hard time teething..I still have yet to pop a tooth. I'm looking forward to those though. Everyone tells me I'll be able to eat more foods and boy do I love food. Talk to you all later..

Sunday, July 17, 2005 7:44 PM CDT

Hello everyone! I want to let you all know that I am almost done with all my re-evaluation tests..Thank the Lord! Last week I had my bone scan, CT scan, and MIBG. Everything looks good. The tumor is still there but it is smaller than the original mass. Tomorrow I have my last test, an MRI, and then they will schedule me for surgery sometime the week of June 25. I am so happy the CT scan is over...They had to put a tube up my nose and I of course wanted no part of that, so I kept pulling it out..You should have seen my mom sweat..Then on my first MIBG (a test where they inject radioactive dye into me and it sticks to all neuroblastoma cells--so if there is stuff highlighted on the film it is neuroblastoma, if nothing is highlighted I don't have it) my old mass that was highlighted had faded, but there was a new mass...So since I had already been sedated two days in a row we had to come back Friday and do another picture which takes about 15 minutes while I was awake! Yes, they had to strap my down and put a machine about 2 inches from my face while I was awake..as if the feeding tube two days before wasn't enough torture. Thankfully, my Papa was there...I know my Mom is always there when they torture me so she's kind of lost my trust when we are at the hospital, but my Papa won't let me suffer...I was screaming, but my Papa came and sat by my with his chapstick and we played with his tube of chapstick the whole time..I love him. And wouldn't you know that the new highlighted mass was just some poop that had the radioactive dye in it. hmmm.all that fuss over nothing. Then I went to Brookfield Zoo with my Baba and Papa and Mommy, and Ella and Lexie..so much fun..but Mommy is getting called to go to Starbucks with grammy...love you all..bye

Saturday, July 2, 2005 2:42 PM CDT

Hello everyone!
I want to let you know that I have successfully completed my last round of chemo!!!!! It made me really sick this time, but that's ok because I hopefully will never have that icky stuff ever again. Next I have all the re-evalutation testings. They are scheduled for July 8, 13, 14, and 18th. From these tests they will be able to figure out how extensive my surgery will be. Hopefully, my surgery will be within a week of my last test. We have to wait until my blood counts are good.
Besides all of that junk, I am doing wonderful. I crawl everywhere and try standing up without holding on to anything. I love my cars and trucks. I love to push them around and go vroom vroom. I love riding around in my cousins Jeeps. When they are feeling in the mood, they give me rides. I think they are pretty neat. Thanks for all your thoughts and prayers...please keep them coming....One request, I would like all of you to pray for a new friend. The nephew of a member at our church was recently diagnosed with neuroblastoma. His name is Carter and he is 2 or 3 years old. Please pray for him and his family as they face this long, hard, confusing journey. Love you all!

Thursday, June 16, 2005 6:47 PM CDT

Hello everyone! I am sorry it has been so long since my last entry, but my Mom's a bum...no just kidding. I have great news to share with everyone. First, I only have one cycle of chemo left and that is scheduled for June 29 and it is only one day!!!!!!!! Two weeks after that they will do a week of testing on me. Yuck..this means CT scans, bone scans, MRI's, and MIBG's...not very fun..It's like a week of starvation..What is it lent in the middle of July?
From there most likely surgery and if every thing checks out ok I will be through with that place..I will only go back for check ups about every three months...The other good news is that my catecholamine levels are within normal range!! YES! The catecholamines are given off by the cancerous neuroblastoma and excreted in my urine..When I was diagnosed my numbers were way high..showing signs of the cancer..so now that they are within normal range it is a good indicator that the cancer is no longer inside of me..hip hip hooray! Well, I love you all and thanks for all your continued thoughts and prayers..by the way please check out the site of a fellow pediatric cancer patient who lost his battle with cancer, he is Super Jake. www.justforjake.com and please include his family in your prayers as they deal with their great loss.

Monday, May 9, 2005 2:19 AM CDT

Well it's me Jake again and I wanted to wish my Mommy a Happy Mother's Day! (I had to do this late because I want to surprise her with it) Thank you Mommy for everything you do for me.....like....playing with me when I know you are ssoo tired, all the hugs..I love those Mommy, letting me play and get dirty (the splashing tubbies are my favorite), always telling me how strong I am after I pull your hair out, letting me hold the remote, how handsome I am, reading to me, sharing me with my Papa, Baba, Uncle Shane, Auntie Gigi, Ella, Louie and taking me to visit my great Papa and Grandmas! They are so funny, even that Grandma who looks funny when those white things fall out of her mouth. I love our nature walks, showing me the new kitties, singing our funny songs, always making sure I have nanas to eat, letting me drive on the rocks, smelling my stinky feet (Baba says I get that from you) then smiling and saying peewwwwwwiiiee, and then you kiss them....that's cool, thank you most of all for taking me to the get well Dr.s because I know you want me to get to be a big boy, when I do I'm going to hug you real tight tell you in big boy words...............I LOVE MY MOMMY SSOOOO MUCH!
Love, Jake .........P.S. If my spelling is bad it's Baba's fault, she had to type this for me because when I type the words look funny!

Thursday, May 5, 2005 4:07 PM CDT

Well, I tried going for Cycle 6 of chemo yesterday, but they sent me home because my counts are too low...Hopefully they will go up in the next week and I can have it next Wednesday. Mommy, said it was good news for me because this means another week of tubbies to enjoy. Plus, this way I wont' be sick on Mother's Day. I need to take a nap now so I can get stronger...I use up my energy really fast these days, you see I can't stop crawling and standing up...I'm thinking about walking soon and really giving my Mom a run for her money..Ha. I love you all.

Tuesday, April 26, 2005 3:43 PM CDT

Hello everyone!
I am happy to say that my counts are up, so my Mommy took out my access which means I get to take tubbies! I am one happy baby. Not only am I taking tubbies these days, but I am crawling up a storm...Watch out nothing is out of my reach these days! This Friday is the Hat Gala..I am excited. Thanks to everyone who is coming. It should be a fun time...I love you all so much...but I need to go..I have lots of places to crawls to these days...
Love,
Jake

Friday, April 15, 2005 9:52 PM CDT

Hello everyone! I have finished cycle 5 of chemo without a hitch!!! I had lots of fun this time..On Wednesday my Mommy and Baba Bo came. Thursday my Papa and Mommy came and I had a cool roommate..He was only a little older than me and just as great and wonderful as I am. I wish him all the joy and happiness in the world. And on Friday it was me and Mommy and Baba Bo again, but I had a surprise. My Daddy came to visit me! That was exciting. And as my grandma mentioned on Wednesday I got the surprise of a lifetime..I met Kerry Wood. He was at the hospital because he and his wife, Sarah, donated a large sum of money to the hospital and wouldn't you know it they were having the reception right down the hall from where I was and since it was so late I was the only little one left in the Day Hospital so I had Kerry all to myself..Those long days pay off. What happened was me, Mommy, Baba, and my nurse Shannon went out into the area where the reception was and there were only about 20 people there and the nurse told him that there was a little fan who would like to meet him and he came right over to me. He smiled and was oh so nice and so was his wife. They took pictures with me and Kerry even picked me up but I got a little scared and started crying so Mommy took me back. The next day the nurses told me that Kerry had a bad day but after he met me he felt so much better and even went to visit the children who were on the west side of the floor(inpatient oncology/hemocology patients). So that's my Kerry Wood story..he even remembered my name later when we were leaving and made sure to say good bye..the world needs more people like him and his wife. As soon as Mommy gets the pics we will put them on this site. I hope you all are doing well. Love you.

Thursday, April 14, 2005 7:39 PM CDT

Well, as of today I am currently in my 5th cycle of chemo..As of yet I am staying strong and have had no negative side effects(during this round of chemo)..I am as playful as ever. I started yesterday and will be done tomorrow..Remember I have chemo every three weeks for three days. The first day is the longest and then the next two days are only a few hours if I don't need a blood transfusion. If I need blood because my hemoglobin is low then that's an extra 4 hours. Mommy tells me that after cycle 8 of chemo I will be having surgery to remove whatever they can of my tumor(hopefully all of it-please pray for this to happen). Then if the cancer is all gone I will be done with treatments and will only need follow up visits. If there is still some cancer left they will do something they say they are not too sure because they have to see what is going on but it will most likely be radiation and/or more chemo..Yuck..But it's ok because I have the best care in the world and I know with all the prayer and support of family and friends I will beat this and grow up to be a strong, kind, generous, family man (can't you tell my mommy is putting words in my mouth). I love you all and thanks again for the thoughts and prayers.

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