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.