Jingle Bells and Happy Holidays

Happy Holidays everyone. Below is link to YouTube showing Jake singing Jingle Bells.

http://www.youtube.com/watch?v=DdwvBmsPRFA

Jake is really getting into the Holidays this year. He is aware of Santa and that his real name is St. Nicholas. We read "The Night Before Christmas" before going to bed. He has been a good boy and asking Santa for Bakugan and a drum set!

It's great living at Crown Center during the Holidays. We go down to Santa Land most every day. They have a little play area before you see Santa. He loves it. Well we have to sign off for now since Jake wants attention.

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.

Danger Boy

Jake is feeling well and he is back to being danger boy again. He loves to go to the playground. He looks at the older kids and want to try the stuff they're doing. For example, he thinks he can jump down from a platform 5 feet high. He wants to play football with the grown adults at the park. I guess this is all normal. We are happy and thankful that Jake is spending less time dealing with his illness and more being a kid.

Jakeism

Jake has always been a blast. He is very verbal now and bursting with personality. Jake's innocence and his truthful view of the world is huliaruous and enlightening.

Jakeism 1: Jake was holding up an elevator today while he had to go back into the house to grab a few more breakfast sausages. He had one in his mouth and a slice in each hand. After we got on the elevator, we told Jake that he was holding up the lady that was already on the elevator. He took the sausage out of his mouth and said "sorry." He then put the sausage back his in his mouth and proceeded to eat again. Mark told the lady, "we are teaching him not to talk with food in his mouth." I guess Jake found his own way to achieve manners.

We went to clinic this Monday and found that Jake's ANC was very low. This is the worse blood count we have seen since he started the treatments. The doctor stopped all chemo treatments to allow him to recover. It didn't really surprise us yet it alarmed us to hear it. Last week we saw Jake getting tired easily and he burst out in a blood nose that lasted for 5 minutes.

Jake retreated into his bedroom after our clinic visit. His bedroom is his sactuary. We know when he is scared because he seeks the safey of his room. I went to the grocery store and loaded up on healthy foods to cook him. All I can do at this point is make sure he gets a good diet, a clean house and lots of love.

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.

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.

A new plan

Jake finished his interim maintenance portion of his treatment today. We didn't believe them when the doctor told us that this was an easy phase since Jake endured 2 trips to the ER, plainful limbs, and many days of nausea. We received the new treatment plan for the next two months and they were right. Jake will be receiving numerous cocktails of chemotheraphy. Some of them are painful shots to the leg muscle which he will get for 3 days in a row, twice. That's six shots. Mark and I are dreading this for Jake. Around Mark's birthday we should finish this phase.

The new treatment plan will lower Jake's blood count. We will help him through this with healthy eating and cleaning the house from top to bottom. Keeping the house clean will be a challenge for me. I will have to find time saving gadgets. I love my Swifer WetJet for hardwood floors. My mom recommended it and it's been great.

Onward...

Chatterbox

On Feb 2, 2009, they stepped up his chemo since his counts were better. The poor baby received Methotrexate and Vinchristine through his port IV and Methotrexate through spinal tap. He has painful days of arthritic symptoms and nausea following treatment. Since I had to go out of town this time during his bad days, Nana stayed with us to help out. Jake is getting so big, it's funny to see her pick him up because he is almost as big as Nana.

He has been gradually improving and today he was feeling much better. I took him down to the shops this morning. Jake greeted everyone with zeal. Jake picked out a Snoopy birthday card for Grammy's birthday. It's true that you give people what you want for yourself. LOL!

He had a great day of laughing and constant action. Jake's vocabulary is exploding. He is making long sentences that amaze us. He gave Mark a potato chip and said "Nana gave it to me." He knows most of his alphabet and can count to 20 easily and to 100 with a little help. He has amazing memory. Eventually Jake will outsmart us but for now we are enjoying teaching and nurturing our little chatterbox.

Mom, I'm sorry

Jake has been running a fever since last weekend. Our family has the same crud together except that this is potentially life threatening for Jake. Knowing Jake has low immunity, we were concerned.

Tonight, despite theraphy of Tylenol approved by the doctor, Jake's temperature spiked to 102 and we were told to bring him into ER. While I was strapping him into the car seat to take him to ER, Jake said "mom, I'm sorry." I didn't know what to say except, everything was all right and we're going to help him get better. There were so many emotions running through my mind but the deepest emotion was my unconditional love for him.

We finally got released from ER at 11 PM. Jake's ANC is getting better. His cultures from yesterday came back negative and we got a dose of antibiotics. When we got back home, we gave Jake a sponge bath and put him to bed. I hope and pray that he feels better tomorrow.

Skipping Chemo

Jake went in for his treatment on Monday but we left without getting his chemo. His blood counts showed that his neutrophil was down to 430. Average range is 2500 to 7500. He has very little ability to fight infections. We are in a dangerous territory where if he gets a viral or bacterial infection, he may be spending some time in the hospital.

We will go back on Thursday hoping his counts are better to proceed with treatment. This is not good news and the first time he has been off track. Sometimes, I take it for granted how fragile Jake is because he is so resiliant.

He spent some time at popa and grammy's house today. He was talking up a storm and busy doing various planned activities devised by his loving grandparents. They reported that Jake was a picture of health. We hope he stays that way.

Please hang in there Jake, mom and dad love you.

Jake's Birthday Party

Jake is turning 2. We had a birthday party for him today. He was getting excited as we decorated the 4th floor party room with streamers and balloons. The party was loud and full of energetic children on a sugar high. Jake loved every moment of it. I know he enjoyed himself because after everyone left and we cleaned up the room, he still didn't want to leave. What a party animal.

We always love party stunts.

We all sang happy birthday.

Aunty Kathy with the Mayer's girls.

Our dear friends, Don and Jamie.

Nana's balloons.

Crazy man

Although Jake was showing signs that the chemo was working through his body, he still wanted to be crazy man. Jake is getting steadier on his legs. He's getting so good now that he decided to walk backwards and sideways. Jake's attitude is simply amazing.

His true Korean side is starting to come out. He loves spicy food. We took him to Jazz, a cajun restaurant and he tore into their Shrimp Dianne.

Clinic Visit from Hell

We had another clinic visit today. He is in another phase within Consolidation where they try to kill any remaining Leukemia cells. It was an excruciating day. Because he had a bacterial infection two months ago, they put us in isolation. We were in a small room (approximately 10 by 10) with no ventilation. We also had to have the doors closed. For those of you who are parents, picture yourself in a room with a two year old for four hours and he can't go anywhere. On top of all that, they had problems with heating and our room was a burning inferno. Jake was unhappy and we were doing this to him during his nap time. Children's Mercy is a great hospital but I think they get really busy and sometimes forget the patient is a scared little person who is uncomfortable at best with what is happening to him. Mark and I feel very powerless to help him when we are there.

Next time, we will talk to them and take a different approach. I don't want Jake to have negative feelings about the clinic. He has 3 more years left with them.

Jake is doing great. He is getting back his independance that he had long ago. He is walking everywhere and don't need mom or dad helping him. He is becoming quite a communicator. The other day I asked him what he did at poppa and grammy's house. He replied "I watch TV. Sunny Patch." He gave Mark a box of Whoppers and said "Chocolate. Open?" Mark asked him "how do you know it's chocolate?" Jake replied "yeah, it is." We have to start watching what we say.