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.

Hair

Jake's hair is rapidly falling. It started yesterday with his hair coming out in clumps. I was rubbing his head to comfort him and I had think layers of hair on my hands. It surprised me at first but knew this would happen sooner or later.

Jake also gave us a scare yesterday. He stopped walking and saying his legs hurt. We were fearing the worst that his cancer was back. Having a setback while in treatment is very rare and very bad. The doctor checked Jake's blood work from Monday and he feels all is fine and it could be the treatment causing leg pains.

We are doing better today. He started to walk again and since the steriods are starting to work out of his body, he has been a happy little boy. As a treat, we took him to the chinese buffet. He loves it and never wants to leave when we go. He likes to put noddles in a cup and eat the noodles out of it like he is drinking it. All the while he'll say "mom, I drink noodles."

We were in the grocery store tonight and we lost Mark while moving up to the checking lane. I asked Jake, where is dado. He said "I don't know?" Then proceeded to shout at the top of his lungs "Hey Mark where are you!?!" "Dado!?!" I swear everyone in Sunfresh heard him. I didn't care. I was so happy to have my confident, happy boy back.

Bad Week

Mark and I are incredibly lucky to be blessed with Jake. He is a gift. There is a valuable lesson to be learned here. Of all the painful things that Jake has had to endure to cure his disease he still loves. He tells us "I love you so much, . He continues to live life fully and pushes us to do as well. He has taught me so much.

Jake had a bad week. His little body was assulted by continuous chemo treatments that broke down his immune system as well as fast growing cells. He wakes up shaking and hypoglycemic.

His vocabulary is still exploding like crazy. He says new sentences and words every day. He never passes up a chance to say hello to the ladies. He loves dogs of all kinds. I'm fairly sure that once he finds out that dogs can be purchased, he will be asking for one. His current favorite food is french fries, potato chips, dip, salad with lots of dressing and cheese burgers.

He loves ty-dye shirts. When city market opens, we will go find our ty-dye man and buy more. I've made some for him but they don't turn out as dark and bright as the ty-dye man. We go in for blood tests tomorrow. They are going to lay off chemo this week to let him recover. Thank heavens.

Two weeks into it

We are two weeks into Delayed Intensification phase of the treatment. This is the last step before he goes onto Maintenance. Maintenance will last for approximately 3 years and considered easy compaired to what he is going through right now.

Although Mark and I have dreaded this phase, our little brave man is doing very well. Jake has recently acquired a taste for Dado playing music. He wants to go see Mark play all the time. Jake also loves being on the microphone. The apple does not fall far from the tree.

During our clinic visits, Children's Mercy (CM) has a big room with lots of toys and planned craft activities. Last week they had tons of beads on the activity table. Everyone made necklaces, bracelets and key chains. Jake made a necklace and when we went back the second time, he said, "make pretty." The great thing about CM, they treat children holistically.

We have another treatment on Monday. This time only chemo through his port. No spinal tap. However, we do start the steriods again. Of all the chemo the steriods are the worst because it makes Jake crazy and then he makes us crazy. The doctor needs to consider prescribing the whole family tranquilizers during steroid week. Thank god for chocolate and wine.

Taking Jake Down

It's been almost a month since I've posted an update. I apologize. After our last visit to the clinic, Jake has had almost 2 weeks of reprieve from treatment. During those weeks Jake had a chance to live the life of a normal child free of drugs and hospitals. His verbal skills have skyrocketed and we can't believe how much he picks up.

We were in Panera eating his favorite chicken soup and watching the Crown Center fountains. The water was dancing and then it stopped. Jake asked me "where did the water go?" Then before I could reply the water came back up and Jake exclaimed "it was down there!" as he was pointing to the ground. Jake wanted to touch Mark's glasses. Mark told him to be careful since the glasses can break. Jake replied, "it's breakable." Now we have never tought him the word breakable.

Jake is a kid on the move. He hates to sit still and always wants to do something. He can communicate quite well so he is not shy about telling us what he wants or to do. He tells Mark that he wants to go to the grocery store to buy one thing or another. He is very curious and constantly asking "mom, what is it?" He is a sponge. Soaking up the world around him and always learning.

We started the final two months of intensive treatment before he goes into maintenance. This was a horrible week with two visits to the clinic. We also started him on steriods and antibiotics. He is in pain. He wants to retreat into him room since we don't do anything medical in there. He is scared when he is not in there. He is having nightmares and not sleeping well. The chemo took Jake down. He still wants to have fun but the pain gets the best of him.