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.

Update

Jake continues to blossom showing his personality. He has definitely picked up his dad's social abilities. He likes having other children around him and always attempts to make contact in some way. He's does well saying "What's your name? My name is Jake." We've noticed most of the children are shy but Jake finds ways to make them talk to him. I'm very glad that Jake takes after his father in this way.

We take him to the playground at Loose Park, Barnes and Noble children's section, Zoo or Zona Rosa's play area to name a few. We try to get him around children when we can. Jake is a natural leader and is very convincing in getting other children to follow or participate in his antics.

Jake is turning out to be a sweet and sensitive child. He is a quick learner and remembers EVERYTHING. I wish I had half his capacity for retention. We both grow to love him more each day.

What?

Another Jakeism: he says "whaaaaat??" He only does it when we tell him something he doesn't want to hear. It is so funny, I burst out laughing when he does it. Then he tells me "it's not funny!"

Jake is growing both physically and mentally -- fast. He says new phrases everyday and we don't know where they come from but he does say them at the most appropriate time.

We sold his crib today. I feared that he would get possessive over it but when I told him it was for a baby, he was ok with it. In fact, he wanted to see the baby. I told him that it was still in her mom's tummy but he didn't care. He wanted to see who was getting his old bed. Eventually, seeing the mom was good enough. Later in the night, he found the pillow that was on his old crib. It was a pillow that inscribed "I am stronger than this cancer, YES I AM." Anne gave it go him when he was in the hospital. Jake decided it was a good idea to give it to the baby.

Jake is gorgeous, smart and fun. But we have discovered he is very thoughtful. Who could ask for anything more. Especially from a 2 year old.

Diapers no more.

We passed another milestone. Jake is officially potty trained. The key was standing up. He did not want to sit down. There were a few accidents and we went through a lot of changes but it took all but two weeks to get it down.

We will be gladly putting the money we spend in diapers in Jake's college fund.

Jake is so fun.

We had a great time in St. Louis. As soon as we checked into our "St. Louis room", Jake found a cozy chair in the bedroom and made it his own. He put his favorite blanket and his stuffed animals on it mark his territory. We visited the St. Louis Zoo. It is free to get in but $11 to park. I think that's fair. It's an old zoo but big and clean. The train ride was cool because you get to see most of the zoo on the ride. They had a stingray event where Jake got to feed and pet them.

We also went to the city museum. That is a strange place. The first floor is made up of mazes and slides made from recycled materials. The second floor is an acquarium made up of strange collection of mammals as well as sea animals. It seemed as if it was built with things discarded by other acquariums. The third floor was made up of slides for children.

Jake also took a picture of his blue bear in the hotel room. It's his best yet and I thought everyone should see. Blue bear is his favorite toy and buddy. Jake was slowly growing out of him when he turned 1 years old. However, when he started to get sick and during his stay in the hospital, blue bear was his safety blanket. He loves his bear.

We're going on a trip

We are driving to St. Louis tomorrow to visit their zoo and acquarium. Jake is excited and wanted to leave tonight. We started potty training today. I couldn't have picked the worst time, he is on steriods and we are going to be in the car for 2 hours at a time for our trip tomorrow. Jake did really well with it today. I think he was annoyed that I kept asking him if he had to go every 10 minutes. I was even annoying myself.

We will take some good pics and report back.

Danger Boy

Jake is feeling well and he is back to being danger boy again. He loves to go to the playground. He looks at the older kids and want to try the stuff they're doing. For example, he thinks he can jump down from a platform 5 feet high. He wants to play football with the grown adults at the park. I guess this is all normal. We are happy and thankful that Jake is spending less time dealing with his illness and more being a kid.

Jakeism

Jake has always been a blast. He is very verbal now and bursting with personality. Jake's innocence and his truthful view of the world is huliaruous and enlightening.

Jakeism 1: Jake was holding up an elevator today while he had to go back into the house to grab a few more breakfast sausages. He had one in his mouth and a slice in each hand. After we got on the elevator, we told Jake that he was holding up the lady that was already on the elevator. He took the sausage out of his mouth and said "sorry." He then put the sausage back his in his mouth and proceeded to eat again. Mark told the lady, "we are teaching him not to talk with food in his mouth." I guess Jake found his own way to achieve manners.

We went to clinic this Monday and found that Jake's ANC was very low. This is the worse blood count we have seen since he started the treatments. The doctor stopped all chemo treatments to allow him to recover. It didn't really surprise us yet it alarmed us to hear it. Last week we saw Jake getting tired easily and he burst out in a blood nose that lasted for 5 minutes.

Jake retreated into his bedroom after our clinic visit. His bedroom is his sactuary. We know when he is scared because he seeks the safey of his room. I went to the grocery store and loaded up on healthy foods to cook him. All I can do at this point is make sure he gets a good diet, a clean house and lots of love.

Maintenance

We finally made it to maintenance. We will no longer have weekly and sometimes twice weekly visits to the clinic. Instead, we have monthly visits with treatments that are predictable, steady and less intense. Thus far there has been varying and intense treatments with different drugs. Some of it made Jake sick and unhappy.

We've been on maintenance since May 11th and the easing in treatment has made Jake a new boy. We never knew how much the chemo was affecting him until now. Jake is on the go. His brain is constantly working and he is also physically catching up. Since last September when he broke his leg and stopped walking, he has been physically behind. We suspect that his verbal and communication skills are advanced. When we meet people who either have children or teach children, they always comment on his advanced ability to communicate.

With summer ahead of us, we have been enjoying the pool and promising Jake a fishing trip.

Mother's Day

I had a wonderful Mother's Day. Jake kept on saying "happy mother's day." He can be a broken record sometimes but this one I loved! Jake and Mark gave me a laptop bag and an original McQuitty painting. Mark fixed blueberry pancakes and his wonderful cappuccino.

We then went to the Kansas City Zoo and it was packed. Mothers received free ice cream and zoo rides. Jake loves to see the animals and he was brave enough to feed the deers.

By the time we left the zoo, Jake could barely stay awake.

Sent Home

We were sent home today without Jake receiving his treatment. His blood count showed that his ANC (ability to fight infection) was too low.

Although this was somewhat disappointing, I'm glad Jake is getting a chance to recover. His hair is growing back all over. He is getting little baby hairs. Yeah!

Pinky

Yesterday, we took Jake to Bonner Springs, Kansas for the marble festival. They rolled what seemed like tens of thousands of bouncy balls called "Pinky" down main street. Jake was so excited to see it, he just kept screaming in excitement. They had little tents with food from various charities and shops. I was surprised they had $1 hot dogs, .50 cent bag of popcorn, .75 for bottle of water and .25 for chocolate chip cookies. I felt like I had time warped into the past.

Jake offically starts his maintenace phase of his treatment tomorrow 5/4/2009. We will be happy to only go into clinic once a month. I used to hate going into work on Mondays but that was until I experienced going into clinic on Mondays to treat my baby.

Jake has not had chemo for the last two weeks although we've had to go into clinic every Monday for a blood count. Laying off chemo for two weeks has allowed Jake to thrive both physically and mentally. Mark and I wonder what he would be like now if this never happended to him. It breaks our heart everytime we think of it.

Today we planted herbs outside in our patio. Jake was big help. He played with the dirt and watered the plants with his toy watering can.

No more stick

Since our last post, we went through the worst of the last treatment before maintenance. Jake keeps reminding us that there are no more sticks. That's what we call giving him a shot in the leg. His count was low on Monday as expected. We couldn't do Jake's favorite, the buffet. It's bad to eat food that has been sitting out if you have low immunity. We also couldn't get him close to people. It was great seeing him gradually coming out of chemo and feeling better.

Jake's verbal skills still amaze us and others who meet him are just as surprised. Jake is going through a bowling phase where he wants to go bowling all the time. He wants to bowl on the WII, watch bowling championship on TV and do bowling games on mom's computer. He also wants to constantly listen to Greenday. His personality is definitely showing through.

We will start potty training this week.

Half way there

We went back for clinic on Monday and Jake was well enough to proceed with treatment. His ANC (neutraphil) was around 1900. It was 200 last week and therefore he was not well enough. They won't continue with treatment unless you can be above 500.

We were in the clinic from 8 AM to 4:30 PM. Jake had get 2 hours of fluids via IV before they gave him Cyclophosphamide. Then he had to have another 4 hours of IV fluids afterwards. As if that wasn't enough, he also received a spinal tap. They weighed his diaper to make sure he was "going." We ate *ok* hospital food and did tons of sand art. Jake also played with a little girl named Chloe that had kidney cancer when she was 3 years old. She is cured and was there for a checkup.

We also need to give him a shot in the leg this week and next week. Mark has been selected to do this since I'm afraid of needles. Poor dado. Jake freaked out when he saw Mark come at him with gloves since only Rochelle, his nurse, wears gloves to access his port. It had a faint cry of "no dado, not you too." We hate that Jake has to go through this but at least we still have our beautiful baby boy.

Mark said something that his so true and a relief. Jake is going to be Jake no matter what happens to him. He won't let the disease change him. Even when he is at his sickest, he wants to be happy. He is always curious about everything and elates when he discovers something new. He is a determined boy (aka stubborn), which he gets from me.

Thank you all for your continued support and loving words.