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.