Best Christmas Gift

Jake started to walk on his own today. He did this much like the first time when he was 14 months old. Except when he did it the first time, he was in school and Mark and I missed it. But this time, we were there to see it. It was wonderful.

He first stood up on his own withouth holding on to anything. Then he steadied himself, legs wide apart for balance and walked without assistance. I was so happy that I called out "hey Mark!" Jake was happy with himself as well so he called out "hey Mark" repeatedly. Everyone there, Popa, Grammy, Nancy, Dan, Isaac, Madeleine, Eric, Heather, Jeff, Mom and Dad all cheered.

I saw beautiful moments tonight. Jake walked towards everyone he loved and gave them a hug. He was so happy with himself.

Jake and his cousins played with their Christmas toys. They also had a ball riding a makeshift sled down Popa's stairs. Jake didn't want to leave but he was getting tired. Jake feeling better and walking again was the best Christmas gift. Pictures to follow...

Jake is walking

Jake is walking now. He started this week and he has now gained more confidence. We know the treatment is working because a month ago, this would have been impossible due to the pain.

Please enjoy, yet another video because action speaks louder than words.

Greenday

Jake had a fabulous day. He got to spend some time at Poppa and Grammy's house. Then he got to ride in the car and have french fries and hamberger. He then took a long nap. He got to go shopping. I got a bonus at work and I told Jake he could buy whatever he wanted. Mark and I presented him with toy cash registers, toy cars, keyboards and a karaoke machine but he wanted an 8 pack of wiffle balls for $2 and a big yellow bouncy ball. I am going to savor this moment because I know it won't be long before he asks us for a real car or a mobile phone.

When we came back home, Mark found a concert special of Greenday on TV. Greenday is Jake's favorite band. The song "Wake me Up when September ends" is his favorite. On a recent road trip to Omaha, we had to listen to that for 2 hours. We finally bit the bullet and told him the song was "gone." We had to listen to 15 minutes of him crying for it. We rather hear him cry then to listen to that song again.

He listened to Greenday and played with his toys. Every now and then he would stop and dance. What a nut. He attempted to walk on his own holding onto a push toy with wheels. We ended the day with me pimping his ride. Nana bought him a toy car that he can ride in but it didn't have a horn. I bought a book with buttons that play music and I hooked it up to his steering wheel. This made him very happy.

I'm looking for more days like this.

Jake's pimped ride.

Clinic Day

Every Thursday (sometimes Wednesday when Thursday is a holiday) we have clinic. We go into Children's Mercy for various procedures. The worst days are when he is getting Chemo through IV, bone marrow aspirate and spinal tap. Today was just the spinal tap.

Jake somehow knew today was clinic day. We don't know how but he suspected it. He started to panic and cry well before our ritual of EMLA creme on his port to numb his skin. By the time we loaded him into the car, he looked totally defeated. We try to soothe him with his favorite movies and books but those are slowly loosing their lustre against the scray clinic.

Jake met a boy named Collin in clinic today who is 5 with ALL. He was diagnosed last year. Like Jake, his legs began to hurt and then he stopped walking. His doctor sent him home saying he was having growing pains until someone finally decided to do a blood test.

He was very nice to Jake. Collin let Jake play with his ball and Jake read to him his favorite book of cars. Collin also showed Jake his port but Jake took no comfort in it. We are hoping for a day when clinic does not cause Jake so much anxiety.

On the bright side, Jake is more mobile and trying so hard to walk!

Jake, if you read this one day please know how much we love you and mom and dad wishes we could go through all this for you.

Jake Standing Tall

Jake has been doing much better physically. It's been a long process to come back to him standing when he was running a few months ago. But we are happy for these milestones redux.

This is dedicated to all those who are actively working to help Jake with his cancer.

Guideline for friends

I had a friend e-mail me the other day. I hadn't talked or e-mailed him in a while and I told him about Jake. Like others, he didn't know what to say.

I've debated how to handle telling friends and close business acquaintances about Jake's illness. I would love to say everything is fine. I say the truth as quickly as possible like yanking off a bandaid that is really stuck on your skin. People usually react with sadness and controlled words to prevent saying the wrong things.

I want to tell you all that it is ok if you are lost for words. Yes there are things you can do for me. I will definitely call you and ask so I hope you mean it. Please do not treat me with kid gloves. I'm still capable of carrying on with my responsibilities as a co-worker, friend and mother. I've just added nurse and Google doctor to my resume. There will be times when I'm crankier or more preoccupied. I will cry if you hug me so please do it somewhere private if you must. More importantly, this won't make me bitter or meaner but my priorities and perspective have changed.

Jake in ER

We had to go to the ER tonight. Jake spiked a temperature of 102. He is fighting some skin infections. We have him on a antibiotic called Clindamyacin. Jake remembered the drill from the first night we were there when we got diagnosed. He was getting nervous and stressed.

I have to say that Children's Mercy is an excellent hospital. I hope you all never have to experience it personally. They ran a CBC, which tests blood for all kinds of things. Anyway, all is normal and he has a temperature because his body has just started to fight the infection and the antibiotic has not had time to work. They sent us home and we were elated.

We are home and Jake is now in his bedroom watching "The Incredibles" for the 100th time. He has literally memorized the movie. He knows what they're going to say next. He feels most comfortable in his room. It's his safe zone and we don't do anything medical in there.

We have 9 more days of the yucky Clindamyacin. Wish us luck.

In Remission

We got at call from Dr. Shore today. Jake is in full remission. According to him, this is the best outcome that we can expect. His treatment will be on the low/average risk path. We will find out the cocktail of chemo this Thursday but Mark and I are so hopeful.

Jake has been crawling everywhere. He has also started to put weight on his legs. He is feeling more confident. We are going to celebrate tonight with chicken, beans, corn and crab legs watching "Toy Story" and "The Incredibles."