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.

Jake's New Do

Jake has a new hair do. Mark shaved the remainder of his hair and it revealed a perfectly round head. As you can see, he is still handsome. If I could look this good bald, I'd shave my head today.