Dear Donor

This last week I've been asking the Dr's, nurses, if there is any way I can send the person who donated their bone marrow a thank you card or letter. They said I can, but because of all the "privacy" laws, I would have to wait until a year from the day I received the bone marrow. I will send that thank you when the year is up but until then, I feel I need to send something now. So, here it goes:

Dear Donor,

A little over 2 years ago, I received a phone call from my Doctor telling me that the pain in my side and all the other symptoms I've been having was a result of a rare type of Leukemia call Chronic Myloyd Leukemia (CML) As my wife and I collapsed on to the floor in disbelief, my first thoughts were of our two boys, who were at the time 6 and 2. At that moment, not really knowing what else to say, I turned to my wife and promised her that I would not let this disease kill me. For the last 2 years my goal every day has been to try and live up to that promise. The medicine they have for this type of Leukemia worked great at first, but after 2 years of one medicine that stop working and the other two that became intolerable, we started looking for a donor. My two bothers were unfortunately not a match, which lead us to going to the national donor data bank, which lead to you. I have no idea why you registered yourself as a donor, but I'm eternally grateful that you did. Because of this gift you have given me, not only do I have a great chance of seeing my two boys grow up, but I can keep that desperate promise that I made to my wife that I would not let this disease kill me. Thank you for what you have done. I'm eternally grateful. You are my hero!

Sincerely,
Jason

P.S.
I'm still doing great! My Doctors are thrilled with my progress. Although I still have a long way to go....so far so good! Thanks.

Day 2 Still doing well

Jason is doing well... well for BMT patient. Most of BMT patients have the procedure while they are really sick. This didn't apply to Jason.

His leukemia was well under control, his health was good. Maybe this is why he is tolerating everything much better so far. Doctors and nurses say that he will loose hair completely, mouth sore will take over his mouth. He already has nausea and diarrhea... so he will have some rough few weeks coming. He can not sleep long hours because nurses come in and check his vitals every few hours even middle of the night, and he has to go to the bathroom. He has tons of fluid going in that's why he has to go every 30 min.

Mean while, he enjoys our visits and walks us back by the elevator where he is not allowed to cross over the restricted area. Hope he will recover soon. We appreciate your warm thoughts, comments and prayers.

Love,
Mayumi

p.s.

I uploaded some more pictures from the transplant day- blog title: Happy NEW Birthday. You can see the marrow!

Hair

Jason wanted me to post some pictures, so here are some of my picks of the day from 9/27/11.

As most of people knows when you go through Chemo, loose hair. So, doctors and nurses recommended us to shave Jason's hair before it falls off everywhere. We all had a great time shaving off his hair. Jason wanted to have a mohawk, and I wanted to express my love. We all came to a conclusion that we like simple bold.

Even though Jason has finished Chemo now, his hair is still growing a little bit. I noticed yesterday, his hair looked a little lighter and his eye brows were thinner. The nurse said it'll fall off completely in a few days.

The reason why the hair falls off is Chemo kills most of active cells; they are hair and GI system. That is why another famous side effect from Chemo is mouth sore, loss of petite and diarrhea - all in GI (gastronomy & intestine). He is experiencing most of the side effects now and tired of going to bathroom every 30 min.

Hickman Line

This is the Hickman Line- central line put in Jason on 9/28/11. Boys thought Daddy was becoming Iron Man or Darth Vader. Yes, my boys are clever!

The name Hickman came from the person who invented this type of central line, and he was from Logan, UT!

Before this was invented, they put a similar kind of line and more than 90% of patients got infection through the line. Hickman simply added almost cloth like material on the line where it comes out of the body so that the patient's skin grows around it, and prevent infection. The rate of infection became almost nothing after the invention.

A small incision was made by Jason's collar bone, and as you can see on the X-ray photo, the line goes right by his heart. This procedure was done less than 1 hr. What a handy, or should I say... NO HANDY device for patients like Jason who has to have IV line for a long time.


A friend of ours who had BMT 8 years ago has two Hickman lines put in on both side of his chest, and both of the incisions were 2-3 inches long. You can't even see Jason's scar, and I am amazed how much the medical technology has improved even since then.


Posted by Mayumi

Happy NEW Birthday

Hi everyone! It’s Mayumi. I’ll try to post things here and there for Jason while he is working hard for recovery.

October 7, 2011

Today is the day. The donated marrow was scheduled to arrive Seattle around 7pm.
I checked with Jason few times during the day to see how he was doing. He finished the last round of chemo yesterday, and had been resting most of the day. He sounded tired, but he said he was doing well except he had to go bathroom every 30 min.

I told Ty what was going to happen tonight. Daddy was getting new marrow. Ty said he wanted to come with me. I told him he couldn’t come because it was going to be really late. But Ty insisted to come – I thought he just wanted to watch TV with Netflix which we don’t have at our house, or play with our computer which had been with Jason since he was admitted in the hospital. The real reason why Ty really wanted to go to the hospital with me tonight was to see Daddy’s new blood. DADDY’S NEW BLOOD! How sweet! It was going to happen tonight!

We got at the UW Medical Center around 9pm, of course Ty turned on his TV shows as soon as we got there, and we waited… no news. It was almost 9:30pm, Jason was getting tired, so we turned off the room light, and tried to get some sleep. Nurse Emily came in and out few times checking on Jason’s vital signs and other stuff, but she told us every time she had not heard where the marrow was yet. Finally, around 10:45pm Emily came in and said, “it’s on the way from SCCA, should be here in 10 min.” She gave Jason Tylenol and Benadryl as prep-meds to avoid any reaction with the marrow. The common reactions are rashes, fever, chills, etc.

Even though we were in the dimmed silent hospital room, I could feel our excitement. Suddenly, Ty’s body got tighter and his breathing got slightly faster (he was laying down with me in a small lazy-boy), my heart started to pound, and Jason… too quiet! We didn’t turn on the light, didn’t even move, but quietly confirmed our excitement to each other. “It’s coming!”

11:00pm, Nurse Emily and other nurse came in with 5-6 packs of what looked like blood. They confirmed name & ID numbers with each every bag with Jason’s wrist band. After everything was confirmed, Emily told the other nurse to bring the blue paper… more paper work? A few minutes later, 4-5 nurses showed up in the room with blue birthday card for Jason and started to sing the happy birthday song for him as if we were at having birthday dinner at Red Robin.

We took pictures with the new marrow, carefully checking if there was any clue who or where the marrow was from. Nurse Emily told us that it was from Minneapolis, Minnesota. It was collected 7:35am in the morning; the total volume was 809ml. This morning at 7:35am, somewhere in Minneapolis, 44 years old, around 210lb man who happened to be Jason’s perfect bone marrow match went into a painful surgery to give his own bone marrow for Jason.

We saw the marrow slowly going through his IV. Ty was carefully watching the red moving closer and closer to Daddy’s heart. Jason could have reactions to his marrow as soon as it got into his body. Nurse Emily was there to make sure she was ready to take care of any change in Jason’s body if something was to happen. We waited, marrow keep going in. Nothing happened. As soon as we started feel comfortable (about 30min) later, the IV machine started to beep. Nurse Emily came in, checked the IV. It was clogged. “The bone marrow is denser than blood and even with chunks (believe it or not!), blockage and clogs happens”, Nurse Emily said. She flushed the IV line with saline, and the IV machine went silent. No harm for Jason. That repeated every 5-10min.

By 1:00am in early October 8th, Jason was already asleep because of the prep-meds. Ty was already snoring in the lazy-boy. I was wondering how to move Ty to the car.

It went well for now. Things might change for tomorrow or next week, but it was a good start.
Happy Birthday Jason

FYI: I put Ty in a wheel chair and pushed him to the parking. Ty thought it was awesome.

Day 6: Last Day of Chemo

As expected, Cytoxan is a little more intense than Busulfan (the Oral Chemo I started last Friday) Cytoxan is very common chemotherapy and is use to help fight other types of Cancers like Hodgkins's disease, CTCL, AML CLL ALL and the one I have CML. Because of the massive use of this Chemo, they have it down to a sience on what pre-medication I need before we start the Cytoxan. 4 hours before Cytoxan is used, I start an IV of Hydration and they tell me to drink 2 litters of water (which means I'm peeing every 15 minuntes!) Also, one hour before Cytoxan they start and IV of a medicine called Mesna. This is to help protect my liver and Kindnesy. At last, they give me 2 types of nausea medication This is been working! well, so far. :)

Once the Cytoxan starts, its pretty uneventfully. Your body will tingle in some areas and burn in others, but not bad and goes away pretty quick. One big side effect I did have was burning tingling in my mouth, tongue and the inside of my nose. Pretty intense, took some meds and was completely cleared when I woke up this morning. Other then that, I slept good and ready to go for my last day of Chemo!

Thanks again for every ones love and support to me and especially my family. We love and appreciate you all!

Transplant day with be this Friday!

Jason

Chemo - Day 1 and 2

Well, after 3 weeks of test, blood work, and prep classes, I entered University of Washington Hospital on September 29th. The original plan was to start the Chemo as an out patient, but after considering all the things we had to do, we decided to do everything in the hospital. I'm so glad we did. This is much easier on me and Mayumi who would have had to help me with the medicine every 6 hours for 3 days and go to SCCA with me all day for blood work. The first to 2 days of Chemo have been good. I feel the same as I did before I came. The type of Chemo I'm taking is called Busulfan. The only way they produce this type of oral Chemo is in small 2 mg pills and my dose every 6 hours is 100 mg. Instead of taking 50 small pills at once, they put 5 pills together in one capsule. So I'm taking 10 capsules all at the same time. This will go on until Monday Oct 3. On the 4th, I will start a new type of Chemo called Cytoxan. The will be done by an IV and will go directly into what they call a Hickman line that they put into my chest last week. From this line, they can also draw blood, give me medicine etc.

Thanks again for our Ward Family, Neighbors, and Friends who have helped out over the
last few weeks. We couldn't have done this without you!

From here on out, Mayumi and I will try to start posting daily

-Jason