Thursday, December 25, 2008
Best Christmas Gift
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...
Thursday, December 18, 2008
Jake is walking
Please enjoy, yet another video because action speaks louder than words.
Friday, December 12, 2008
Greenday
Jake's pimped ride.
Thursday, December 11, 2008
Clinic Day
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.
Monday, December 8, 2008
Jake Standing Tall
This is dedicated to all those who are actively working to help Jake with his cancer.
Sunday, December 7, 2008
Guideline for friends
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.
Saturday, December 6, 2008
Jake in ER
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.
Monday, December 1, 2008
In Remission
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."
Friday, November 28, 2008
He's back...
Jake is a joker. We were watching a documentary on Greece. They were showing ruins and Jake's reponse was "rocks...lots of rocks." He didn't want to take a nap today so when I laid down with him he said "mom, more tickle please." He wanted to play and have me tickle his chin which he loves.
He is crawling and talking alot. He points at everything he knows and shouts out the name. We are so happy to see him getting better.
Wednesday, November 26, 2008
Day 29 - End of Induction
Since Dr. Shore was away on family leave, Dr. Wood did the procedure. They had a new doctor who started recently at Children's Mercy and they wanted her to do the procedure but I stuck to my guns and insisted on Dr. Wood. I felt bad for doing this but a couple of things happend in the hospital a few weeks ago. First, a doctor who had a fellowship at Children's Mercy did Jake's first bone marrow aspirate and she couldn't get it done so another doctor had to finish up for her. They stuck Jake 3 times! Second, Jake's IV became inoperable so they had to find another vein. Three (3) seperate nurses stuck him and couldn't get it done. They finally had to take him to the OR to get a doctor to do it. Each nurse insisted that they could do it while Jake screamed for mercy each time. They already experimented on Jake enough.
We are going to have a quiet but restful Thanksgiving with just the three of us. Poppa and Grammy will be coming by Thanksgiving night to light the tree. The family gathering was cancelled to keep sick family members at bay. Jake's ANC (2310) , platelet (208,000) and white blood count (8.07) are returning back to normal. He is doing well and we are thankful.
Friday, November 21, 2008
Who rules Barter town?
We have now realized that Jake is Master Blaster and he rules our Barter Town. We feel awful that Jake has to go through painful medical procedures as well as having been in pain for months. So naturally, we have been endulging him. This hasn't been good for Jake. He needs things to get back to normal for him. He also needs structure so that he knows what to expect. That was painfully obvious to me when he asked me one day if he could go back to school.
We are pulling back slowly and letting him do things for himself. I am also going to setup a chart of daily tasks that he has to complete. Instead of offering him things, I will wait until he asks. When he is done with the aggressive treatment, he will go to poppa and grammy's house for school. This will help greatly to get his confidence back. According to his latest lab results, he is getting better so I know when he's playing me. Ha ha.
Monday, November 17, 2008
So far so good
They have done another test called the MRD (Minimal Residual Disease). Without giving you all a history lesson, in about 1950's they developed a more sensitive test that looks at a broader sample of cells. This test came back "on the border" for Jake. By MRD standard, he is not in remission. However, we expect him to pass this test by the end of his 28 day treatment.
We are happy but cautious and anxious. Jake had a great time with Poppa and Grammy today. They read him books, played with him and got a much needed break from mom and dado. Jake is probably sick of being stuck in the "bubble" but we can't risk him getting sick with his neutrophils down.
Friday, November 14, 2008
Day 15
The doctor dripped spinal fluid all over the table while grabbling for 1 of 3 vials that collected the fluid. They have to put back equal amount of chemo drugs into his spine what they take out in fluid in order to prevent Jake getting a massive headache. So the dripping of spinal fluid onto the table bothered us since that does not get measured.
Jake was lethargic and tired all day. We wish like anything that we can take the meds and get the procedures done to us rather than Jake. We will find out on Monday whether he is in remission.
Jake is so strong. I've heard many parents say that their child with cancer is their hero and I now understand.
Wednesday, November 12, 2008
Halfway
It will be a long day for Jake since he won't get to eat anything from 6:30 AM until he is done with his procedure which should be around 1:30 or 2 PM. I only say this because being on steriods makes you VERY hungry.
Please stay tuned on Friday. I will post as soon as possible to let you all know if he is in remission. I hope we have great weather this Sunday so we can take him to the Zoo. Pray for Jake and good weather on Sunday.
Thursday, November 6, 2008
Bit of Good News
I'll be spending most of this weekend, cleaning the house from top to bottom. Yeah!
Saturday, November 1, 2008
We're Home
Today, we took Jake to the zoo. He was a little cranky but started to enjoy himself after the train ride. I think he is still traumatized by the hospitalization. I am dreading the clinic visit on Monday.
Thursday, October 30, 2008
Day 2 of Treatment
We are on trial. As parents, we have to get Jake to take his chemo pills in order for us to go home. Keep in mind that he is only 21 months old. Mark and I tried to give him liquid form, but Jake refuses since it tastes so bad. We crushed up the pills and gave it to him in chocolate pudding, vanilla pudding, apple pie and m&m's. He is starting to not trust his food so we stopped that.
We finally sat down with him and told him he had to take his pills in order for us to go home. He took the pill and put it in his mouth and spit it back out! I love him for trying. We are force feeding him the pills now and holding his nose with a shot of water. It isn't what we want to do but works. I hope he gets used to it.
Jake is taking the chemo very well so far. They said that the steroids will make him crazy, moody and mean. We're ready.
Wednesday, October 29, 2008
Leukemia
We took Jake to the doctor on 10/24 because he refused to get out of bed that morning and he was getting worse as far as wanting to stand on his legs. The pedi saw red spots on his face, petechiae. This was a warning sign that he was anemic. She ordered blood tests which showed his platelet, hemoglobin and other blood health indicators being off. We also took x-rays of his previously broken leg an ultrasound of his hips. His fracture was healing but he had fluid build up on his hips. She suspected he may have an infection causing him pain. We were to call if the petechiae showed up below the waist.
Friday night, we started a therapy of Tylenol to keep the inflammation down. We got sushi and tofu soup (his favorite). He acted crazy and had a lot of fun that night. We thought the Tylenol was finally helping him with his pain. We thought once the virus cleared up, he would be good again.
The next day, while he was taking a nap, I saw petechiae on his legs. The pedi told us to take him to the emergency room. She also told us that we may have to stay overnight. Mark and I were very surprised. We were at Children's Mercy for 4 hours while they ran tests. We had no idea why it was taking so long. We were ready to walk out.
We knew it was bad when 2 doctors came in with somber looks. They told us that the lab saw blasts that were indicutive of cancer. They are suspecting Leukemia but will have to do further test to find out what kind of cancer Jake is carrying.
Mark reacted with disblief and wanted to take Jake home to get a second opinion on Monday with the "A" team doctors. I wanted them to be desperately wrong. They put us in the bone marrow transplant wing of the hospital because they had a full house. After we put Jake to bed in his hospital bed, Mark and I sobbed uncontrollably.
Sunday morning, we woke with broken hearts and unbelievable sadness for our Son. We were supposed to take Jake to "Boo at the Zoo." I felt so deprived for Jake. He should be out at the Zoo running, having fun and begging for candy. He should not be in the hospital with cancer. I asked God to give me the cancer. We met our interim oncologist Dr. Dean. She had a fellowship at the hospital. She tried to comfort us with hope.
Monday morning, we conducted a bone marrow biopsy. I can never forget the look Jake gave me when they gave him the sedation drug (Versed/Fentenyl) before the procedure. It was a look of paralyzed plea for rescue and artificial happiness. We read him "Baby Bear Baby Bear what do you see" while they pushed a needle the size of a pen head into his hip to extract bone marrow.
We talked to Jake's oncologist, Dr. Shore, Monday afternoon. He said that 95% of childhood Leukemia go into remission after the first treatment and 78% go into total remission (cure). We were hopeful. The doctor was factual yet likeable.
Monday night, Dr. Dean told us the bone marrow results. Jake's cancer was Acute Lymphocytic Leukemia (ALL). His cancer also had its own DNA pattern which will allow them to target the cancer more closely. This is all good news.
Tuesday night Jake got his port. A port is a surgically inserted tube that allows IV delivery of drugs. They can also take blood from it. This was good. Jake's veins were collapsing and they had to stick him numerous times for new IV lines and blood samples. He was supposed to go in the morning but didn't go into OR until 8 PM. He had not eaten or had liquids for 20 hours. Tuesday was our 13 year wedding anniversary. Anne and our friends brought dinner from Morton's of Chicago to the hospital. We sat in the OR waiting room eating our dinner waiting for Jake. Mark and I didn't eat or drink along with Jake. The dinner was absolutely wonderful. It didn't hurt that was from Morton's either. We got a little taste of the "good life."
Wednesday, they did an LP. They tapped into Jake's spine to get spinal fluid to check for cancer. Although he received sedation cocktail of Versed and Fentenyl, he cried. He was so tired of painful procedures. Jake also received his first rounds of chemo today. He is starting to get his color back from the blood transfusion. I didn't realize how sick he was until I saw how much better he was today. We have a rough road ahead of us with 6 months of intensive therapy and 2.5 years of maintenance. Mark and I are hoping with all of our might that he is cured and we can see Jake's children.
Thursday, October 9, 2008
The cast is off
Saturday, September 27, 2008
20 months
Jake can also count to 10 and is working on counting to 20. He makes complex sentences like "no eat, more outside", "no night night", "ride bi-ky-ko (bicycle)" and "more cho-co milk".
Below is a video of him counting. He likes to count his ducks in the tub.
Tuesday, June 24, 2008
Monday, June 23, 2008
Toddler Bed 2
I love it that he can wake up on his own and come out when he is ready. He wakes up very slow like his mommy.
Saturday, June 21, 2008
Kung Fu Panda
Toddler Bed
Friday, May 2, 2008
Springtime in KC
Friday, April 18, 2008
He's walking!
Saturday, April 12, 2008
SARS Pit of all SARS Pit
Well I don't have to tell you that Jake started yelling for joy when he saw it. We were there for at least an hour playing and eating. When you have a rainy and cold Saturday and wonder what to do with your active child, you should try it. Here he is on the merry-go-round with his dad-o.
Jake loved the merry-go-round. The first time around, he was enjoying the ride. The second time, he was studying the horse. The third time, he wanted to know how the horse was going up and down. Jake is very analytical.
Thursday, March 20, 2008
He is finally walking!
We took him took him to the park today since it was 70 degrees in Kansas City. As you can see from the picture above, he loved the park. I am sure we will be back.
Wednesday, March 19, 2008
14th Month Birthday
Monday, March 10, 2008
Not a Walker but a Talker
He is starting to transform into a boy from a baby. He is starting to test his limits. I think it's kind of cute now but I'm sure I'll won't later.
Friday, January 25, 2008
Dado
Monday, January 21, 2008
1 Year Doctor's Appointment
This MLK weekend was a big one for us. Our baby is turning into a little man.
Sunday, January 20, 2008
Jake's Birthday Party
We had Jake's 1st birthday party at T-Rex. We had parents, good friends (Mayers and Anne T.) and relatives. The picture above shows Jake's birthday cake with the Diego theme. He loves Diego. You can also see Savannah Mayer in the background smiling.
Jake Digging into his birthday cake. It got messier after his second piece.
He had cake frosting up his nose, between his fingers and of course on his clothes.
Back home, we had an adult version of his birthday party with wine and presents from Mark and I. Jake got a big dump truck in this box. As we suspected, he liked the box. Jake was so wound up from the day, he didn't want to go to bed. We had plenty of people over and he wanted to party. What a year it has been and we are looking forward to more.
Saturday, January 19, 2008
HAPPY 1ST BIRTHDAY JAKE!
Jake less than an hour after his birth. Can you hear those lungs working?
Wednesday, January 16, 2008
Denver trip
One of the good things that came out of the museum is that we took this picture of Jake that shows his naughty nature! Ah ha, it has been finally caught on camera.
Monday, January 14, 2008
Almost 1 Year Progress
After his birthday we will start weaning him away from his bottle. He gave up his bikie pretty quickly (at 6 months). I don't think the bottle will go as smoothly.
Wednesday, January 9, 2008
3rd Molar
You can see the lower right molar in this pic.
Mark and Jake were getting the mail and a couple of people (strangers) asked Mark if he adopted Jake from China because they were going through the process. Hmmmm...Mark told them that Jake was his biological child.