All good here...

I started this blog as a way to keep a diary of Jake as he grew.  I wanted something to remind me of those little everyday moments.  I had no idea it would turn into a channel to talk to doctors, friends and family about Jake's cancer treatments.   This blog was private because some of it was too painful and personal to share with everyone at the time.

There were bits of good stuff like his Make-a-Wish grant that allowed him to meet his favorite TV idols at the time.  Shane and David.

Cancer update is that this is his last year of staying in remission before he is considered cured.  His "therapy" lasted from October 2008 to December 2011.  

We had blood work done today and so far good.  This picture say so much about how happy and relieved I am.

This blog will now return to the regularly scheduled program and be about his adventures in growing.

Jake has become a great kid.  He loves food hacks, Minecraft, satisfying videos, Legos, basketball and friends.  He loves and values his friends.  Cliche, but he turned out better than we could have ever imagined despite our cancer detour.

Play date with Miranda

Jake had his first play date with Miranda. He worked during the week to earn enough money by taking out the trash and cleaning up his toys so he can take her to a movie and lunch. Having two toddlers close in age with Miranda being 5 and Jake 4, it was much easier than I expected. They screamed, teased each other with glee and I was ignored. Jake took Miranda down to the Crown Center shops and showed her around to all his favorite shops and activities. He also played his favorite movie's for her. The day was filled with non-stop activities and after Miranda left, Jake quickly fell to a deep nap. She wore him out!

They both need lessons.

The lovely Miranda

All the stuffed animals are in the living room.

The New Upside Down Show

It all started with Heather and Kim from Make-a-Wish (MAW) visiting our home in December 2010. Although Jake was bashful, they played games with him and found their special way to ask him his wish. He wanted to go bowling. It took a while for us to get him off that wish. His TV idols were Shane and David from the Upside Down Show. So the idea was born that Jake's wish would be to go bowling with Shane and David. This excited Jake to no end. If they couldn't do that then plan B was Disney World. Jake's birthday was on January 19 and he told me his birthday wish was to bowl with Shane and David . He also threw numerous coins in various fountains with the same wish.

We got the call in late January that MAW was planning on having Jake meet Shane and David in mid February but it wasn't final yet. Mark and I kept it quiet until we got the final word two weeks later. It happened very quickly. When we told Jake, he was somewhat in disbelief. We told him, he was going to touch and talk to Shane and David and not just watch them on TV.

We got a call early 6:30 AM from our limo driver that MAW sent. We knew something was strange when he said he couldn't pull the car into our driveway. When we saw the limo, we finally new why. It was a stretched Cadillac Escalade that could hold up to 14 people. Inside ceiling lights that changed color every few seconds stretched from the front to back. Jake was in amazement over the car. We all sat in the very back packed together looking at the changing lights and talking about our exciting weekend. It was wonderful that although we were in a huge vehicle, that the three of us squeezed together in one seat but that's how we are. We like to be together.

Jake at the back of the limo..6:30 AM is so early.

The trip up was uneventful which is how we like it when we fly. The Galt Hotel in Louisville, KY was big and they had aviaries that were totally enclosed in glass. Jake was excited to see the birds and he decided to call the hotel the "bird hotel."

Jake managed to find a bowling alley in an area called the "4th street live." He spotted a sign for "Lucky Strike" that looked like a bowling pin. It was Jake's weekend, so we bowled. We probably would have done it even if it wasn't his wish weekend.

The next day was the big day. Shane and David were so generous with their time and their wonderful imagination. The crazy zany imagination just oozed out from them. It will be a day we won't ever forget. See for yourself...

"The New Upside Down Show"

When it was all over we capped the day with a visit to the Louisville Science Center and had a wonderful dinner together as a family at the bird hotel. It took us awhile to calm down from the high of the day. MAW is a wonderful organization and can't thank them enough for all that they did for Jake. Now back to our normal life but a bit better for meeting Shane and David.

The final year

It has been a while since I've updated everyone on Jake's progress through this blog. We are on our final year of treatment. We felt so overwhelmed before but we are starting to feel a bit more at ease. We are definitely not off our guard but feel better. December 31, 2011 will be the very last day of Jake's treatment. The treatment abruptly ends on that day no matter what stage we are in as long as everything goes as planned. We get to throw away all the pills, syringes, grenadine that hides the taste of medicine, the dread and fear.

Jake will keep his port for at least six more months after treatment so that he can get his monthly pentamadine antibiotic to prevent him from getting a rare lung bacteria. We will have clinic visits every month next year but no more chemo. We are planning and saving for a big Disney vacation on New Years Eve so that we can properly celebrate.

We are starting to see Jake's unique personality. I definitely do not believe in the "tabla rasa." He has mannerisms and opinions about things that are his own. He has his way with the ladies and makes friends very easily. He is a sensative child that hates to get scolded. I hope he doesn't turn out to be a perfectionist because we will drive each other nuts.

We just got back from a special weekend trip to Louisville, KY to visit Shane and David from "The Upside Down Show." The duo are Jake's idols and during the whole experience Jake did not stop smiling and launghing. We felt joy vicariously through Jake like never before. It was a present from the Make a Wish Foundation. The gratitude and appreciation for the organization and the people who donate their time and money is immensely appreciated. One can't walk away from the experience without feeling the love and care the organizers put into the effort. Pictures, videos and details will follow. We will never make them public since this is all so personal and as a respect to Shane and David.

--Jess

Jingle Bells and Happy Holidays

Happy Holidays everyone. Below is link to YouTube showing Jake singing Jingle Bells.

http://www.youtube.com/watch?v=DdwvBmsPRFA

Jake is really getting into the Holidays this year. He is aware of Santa and that his real name is St. Nicholas. We read "The Night Before Christmas" before going to bed. He has been a good boy and asking Santa for Bakugan and a drum set!

It's great living at Crown Center during the Holidays. We go down to Santa Land most every day. They have a little play area before you see Santa. He loves it. Well we have to sign off for now since Jake wants attention.

One Year Ago...

It was Saturday and about 2 o'clock in the afternoon. We had taken Jake to the doctor previous day due to a whole slew of weird issues especially red spots on his face. She told us if they appeared on his tighs or legs, we were to call them. Sure enough we checked during his nap and they were there.

We were told to take Jake to the ER at Children's Mercy. Mark and I chalked this up to a very cautious doctor but expected to go home. It seemed like forever and there was a marathon of Spunge Bob episodes on TV for what seemed like hours. The ER doctors came in finally to tell us they found something that seemed like cancer in our son. We were sure they had it wrong. It just wasn't possible. Jake was healthy, I had taken care of myself during the pregnancy and we took good care of Jake. We wanted to go home and have them tell us there was a mistake with their tests.

Instead we checked into the bone marrow transplat unit of Children's Hospital because all the other beds for Leukemia patients were full. Mark and I were filled with grief. This was much worse than anyone telling us that we had cancer ourselves. After we put Jake to bed, scared out of his wits, Mark crouched in our hospital room crying and I joined him.

That was a year ago. It took us a long time to work through worrying that we would lose our son. We are now filled with hope that he will have a long normal life but we go into that with caution. Jake is healthy and doing well with his treatment.

We went to Boo at the Zoo yesterday and it was bittersweet for me. He missed that last year because he was stuck in the hospital fresh from his diagnosis and this year he went and had a great time. There are numerous people that I have to thank to pulling us through:

Dr. Shore - The reason our son is alive today. We actually saw him at the Zoo yesterday!
Poppa and Grammy - We love you for always being there for us.
Aunt Kathy and Nanna - thank you for caring
Aunt Anne and Tinkerbelle - Love you so much for being there when we really needed you.
All our friends and neighbors for the wonderful support and love for Jake.

--Jess

Beaches

Apologies for slacking on Jake's blog. We've been having lots of fun.

Jake has adapted to the clinic visits. He has managed to find a silver lining. He likes all the things they do to make it "visitable." When I tell him it's clinic day, he goes through a cadence of things he needs to do: 1) go down the slide in the waiting room; 2) play in the children's kitchen and 3) color. Jake has a port which is a device the size of a dime that lays just underneath his skin in his left chest with a line to his main vein. They use that to give him medicine via IV and draw blood. Without it, they would have to stick his vein at every clinic visit. He used to cry and panic when they would stick his port and draw blood. Now he helps his nurse, Rochelle, draw blood and flush his line.

In September, we took Jake to his first beach. We are cautious about flying with Jake immune system therefore we chose Galveston, TX since it's only a 12 hour drive from KC. We did an overnight stay in Oklahoma City and stayed in Houston, TX. Galveston is a short 45 minute drive from Houston. Galveston is still devastated by Katrina. There were sea front hotels with walls ripped to shreds that looked like it was abandoned. Most homes in nearby Galveston beach front have metal blinds over the windows.

Beach Pics

We also stopped at World Aquarium in Dallas, TX. It was a much needed break from all the driving.

Jake has also broken through another barrier of communication. He is starting to put 5 to 8 or so word sentences together. He is fully capable of having a full meaningful conversation. We were watching a movie the other day and he saw a couple kiss and he said to me "mom, they love each other." A favorite question, "mom/dad, what are they going to do next?"


Jake also loves to cook. We went to Barnes & Noble and bought a kid's cook book and baked some breakfast cookies. It cost us $20 to get the ingredients but they were pretty darn good and good for you.


Jake has a full head of hair now. It has grown back curly, fine and medium brown. Which is a stark difference from straight, thick and black hair he used to have. We are going to let it grow out. I will leave this particular post with a grand picture of Jake thus far.