He's back...

Jake has been off steroids and he is starting to get his tastebuds back. More importantly we have our old Jake back. I didn't notice until now, how sick he was before we diagnosed him. He has tons of energy and he is spending every bit of it being curious, joking and learning.

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.

Day 29 - End of Induction

As of today, we have concluded the "Induction" phase of Jake's treatment. We finished the steriods yesterday and everyone is happy. We went to the clinic today and Jake had his spinal tap with MTX injection and bone marrow aspirate. We will hopefully know the results Friday or Monday. We also suspect that Jake has become lactose intolerate.

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.

Who rules Barter town?

There is a scene in Mad Max Beyond Thunderdome, where the evil Aunt Entity (Tina Turner) is forced to admit that a little man called Master Blaster rules Barter town because he provides Barter Town with electricity.

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.

So far so good

Last week Jake had his second bone marrow aspirate (biopsy). This was done to check how he is reacting to treatment. We got the news today that he is in remission by clinical standards. This is good because it will shape his future treatment and hopefully it will be less toxic.

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.

Day 15

On Thursday 11/13/2008 was a stressful day. Jake went to the cancer clinic. He had four procedures conducted: 1) Vinchristine (chemo) through his IV; 2) blood draw; 3) bone marrow aspirate and 4) spinal tap with chemo. They gave him pain medicine as well as some drug that is supposed to make him not remember what happened. Mark and I could have actually used the drug that made us forget. It was very hard to see them take what seemed like gallons of bone marrow. They stuck a needle the size of Texas in his butt. They also stuck another big needle into his spine to get spinal fluid. Mark asked the doctor how long will it take to get all that bone marrow back and the doc said "a couple of days."

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.

Halfway

We are halfway through the "INDUCTION" period. We go into clinic tomorrow to get additional chemo through his IV, conduct a bone marrow aspirate and a spinal tap. The spinal tap will tell if any of the cancer is in his brain or spinal fluid. They will replace what they take out with am equal portion of chemo. This will either kill the cancer or keep it at bay. The bone marrow aspirate will let us know if he is in remission. They will again put Jake under sedation but not under. He should not remember what happened to him. This is good for him.

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.

Bit of Good News

We went to the cancer clinic today to get a second round of Vinchristine. This drug interferes with the cancer cell's ability to split. They also did blood work. The good news is that they found no cancer blasts in his blood! This does not mean he is in remission, but things are going in the right direction. The doctor said that his blood work couldn't be any better. Jake has also become netropenic. That is one of the side effect of chemo. We have to make sure he does not come in contact with anything or anyone that can get him sick. Other than that, we are good.

I'll be spending most of this weekend, cleaning the house from top to bottom. Yeah!

We're Home

The doctor released us on Friday. We were able to get Jake to take pills and everything is *working*. We will be making regular trips to the oncology clinic starting Monday. Jake has bad days and good days.

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.