1 Year and 14 Days - Stem Cell Transplant Update

So here is the big news: After going through extensive testing at the one year anniversary of her stem cell transplant, my cousin Tami's remission continues. (YAY!) The testing she underwent showed she has no Myelodysplastic cells in her bone marrow. During the recheck she also had to get 7 vaccinations. This is because receiving a stem cell transplant is like having the immunity of a baby so the vaccinations help to strengthen her new immune system and protect her.

Now not only is she driving again, Tami was given the all clear to go back to work part time. Her life interrupted is beginning to return to normal.

Tami does continue to suffer from a mild case of Graft vs Host disease. Unfortunately she may be dealing with GVHD for months or years to come. GVHD is when the donor cells don't realize they are in a new body so they are attacking Tami's tissues as if they are foreign bodies invading the donor cells original body. For now her doctors have placed her back on a mild steroid that is keeping the GVHD under control.

She has requested to meet her stem cell donor. The way this works is that her information is now provided to the donor and he can make the decision whether to contact her or not. They said sometimes it can take months for the person to contact so we'll see what happens. If her donor is reading this, and would like to meet Tami but is afraid he will be publicly outed here on the blog: Please let me me assure you we will honor whatever level of privacy you request. If you want to be featured in the blog I would be happy to give you this space to tell your story. If you would prefer to remain anonymous to the world we will make no mention of any details of who you are, where you live or what you do :)

And this is just funny: Last year while spending 4 months in Seattle receiving her transplant and recovering from the procedure, she and her Auntie (who was her caregiver) would go out shopping whenever Tami felt up to it. Looks like they were a good shopping team.

But can you believe they weren't shopping together when they bought theses matching jackets last month? LOL Tami and her Auntie were 275 miles apart when by chance, they both chose the same floral print jacket. LOL

Update on Tami - 11 months post transplant!

Well there are all kinds of things for m to report to you and almost all of them are really good news! YAY!

1) The one year anniversary of Tami's stem cell transplant is next month!

2) If all goes well at her anniversary recheck she is planning to go back to work the week after 4th of July weekend if her doctor's give her the all clear.

3) Unfortunately Tami is experiencing another mild case of Graft vs. Host Disease. Her doctors are treating it by putting her back on an immunosuppressant drug.

4) While at her anniversary recheck she is planning on signing the confidentiality release in the hopes of being able to directly contact and/or meet her donor someday. In order for that to happen her donor will have to have signed a similar release. Only after both parties have signed the release will the National Marrow Donor Program help facilitate direct interaction between them.

I was chatting with my mom the other day and we are hoping that her anonymous donor will sign his release so that our family can thank him personally for being willing to be a donor and helping to save Tami's life. All we know is that at the time of Tami's transplant he was a 33 year old Asian man who lives in the United States.

In other news Tami is driving again and her hair continues to grow back in. In recent weeks she has also felt stronger for the first time in over a year. She has started doing pilates this week in place of physical therapy to help get her strength back. She says her instructor is a physical therapist so she really knows her stuff :)

Winter Olympics 2010

Oh man was I shocked when I found out that Tami was in Vancouver attending the Winter Olympics! She has always been a fan of figure skating so I was thrilled for her when I found out she was there to see the Women's Final Skate and the Exhibition Skate! Here she is picking up her ticket at the broker's office.

She had a phenomenal seat!

She took this picture herself after the medals ceremony. WOW, right? From left to right: silver medal winner Mao Asada from Japan, gold medal winner Yu-Na Kim from Korea and bronze medal winner Joannie Rochette from Canada.

In her email Tami also said: "Michelle Kwan was at the final sitting in the section next to me. Katarina Witt was also there, I didn't a good shot of her. They sat together."

"I also went to the figure skating exhibition with all the winners. I met Scott Hamilton. He autographed my ticket from the exhibition as he was commentating in the section next to where I was sitting. I went and talked to him after the show. He was really nice. I took the pic when he was signing my ticket."

Downtown Vancouver at Robson Square

The cauldron was not too photogenic due to the barriers and fencing. Fortunately by the time Tami got there they had at least moved the barriers closer. For the life of me I will never understand why they were not able to come up with a better solution to allow visitors to take nicer pictures of the outdoor cauldron. LOL it's still a nice picture of Tami and Don. Too bad the cauldron doesn't look as good as they do!

Anyways Tami had a terrific time. The only really bad part of the trip is that she did catch a cold while she was there. Hopefully it won't linger and she'll be feeling better very soon.

Update on Tami

Day +232 Post Transplant

I spoke to Tami yesterday by phone. The good news is there is no bad news persay. She continues to recover slowly but steadily.

Some of the pain in her joints has subsided slightly. There is a chance that this pain may be long term or permanent caused by the the chemo she received to prepare her for her transplant. Hopefully that won't be the case.

She is feeling better but is still too tired to be able to do the normal, everyday, things she would like to do. Because of a medication she is still taking she isn't driving yet. Being chauffeured around for the past year it will probably feel a little strange when she is able to finally start driving again.

On the good news front, she is not suffering from any active GVHD flare ups and her hair is continuing to grow back in :) Talking to her on the phone she sounds just like her old self. It's very comforting just to hear her voice.

Tami's Post Stem Cell Transplant Update: Day +206

Just spoke to Tami on the phone tonight. Because her recovery process will continue slowly but steadily, we decided for now we will be updating her blog once a month unless something newsworthy comes up.

Presently she is still feeling quite tired. Her back is finally better and she is doing low intensity core exercises and stretching to help strengthen her back and all of her muscles. It turns out that being sedentary and in bed for weeks and months at a time really messes up your spine and muscles so it will be a while before she really feels better.

She is now experiencing pain in her knees and elbows. Her doctor thinks this may be a side effect of the medication she is on to suppress her immune system to keep her Graft vs. Host Disease (GVHD) under control. They are going to try to wean her off of this medication. That means her joint pain may go away but her GVHD may come back. While definitely unpleasant, it's totally normal for marrow transplant patients to experience GVHD for months or even years post transplant.

Seattle Cancer Care Alliance Hospital, Seattle, WA.

Speaking of her GVHD, you may recall that Tami has had a few bouts with it now. First it attacked her intestines just a few days post transplant and then months later her skin, twice. Recently Tami took an out of town trip to Seattle because she is part of a GVHD clinical trial. Fred Hutchinson is a cancer research center that partners with the Seattle Cancer Care Alliance Hospital. They are leaders in addressing and solving many of the problems transplant patients face due to the participation of their existing patients in their clinical trials. Her doctors there were pleased with her progress and said everything was looking good.

While in Seattle she made a stop at Lululemon. While she was there undergoing her transplant one of the employees at their University Village location befriended her and showed her a lot of kindness so she dropped back by to say hello to Pat. If you're ever in the area be sure to go shop at Lululemon if you're looking for cute and comfy yoga inspired athletic wear.

More great news, her former daily then every other day doctor's appointments have now become once a month visits to see her doctor. Man, it seems like not that long ago when she was in the hospital for weeks and getting platelet transfusions every other day last April.

And last but not least her hair is starting to come back. When I saw Tami in October her hair was just barely beginning to grow back in. She said now she is starting to have sideburns again. That has to feel like some kind of milestone. We were guessing that hair grows at about a half inch to an inch a month so it'll be awhile before her hair is as long as it used to be.

So that's it for now. Until next month!

A Message from Tami Day +135

"My back is definitely getting better but still have a ways to go. Went to see my Doctor today and he says everything looks good. He cut my fluids in half and I'm not taking as many meds."

So sounds like she's feeling better. FINALLY! I'll continue to update this blog whenever I receive a change from her most recent status.

Thanks for checking in!

An Update from Tami

An email from Tami:

"If you didn't know I'm back home. Got back almost two weeks ago. I'm doing overall pretty good except for my back. Being on prednisone after the transplant has left my muscles really weak so it doesn't take much to pull something. I pulled my lower back and now my sides of my back. I'm going through physical therapy and also seeing a massage therapist and acupuncture therapist. It definitely has helped but I've got a little ways to go still.

If I haven't talked to you in awhile, I'm still catching up on email and vmail. Its been just great hearing from everyone. Thanks for everyone's support these past few months. I couldn't have gotten through all of this without you."

Tami is home and more good news....

Tonight Tami is back home with her family and sleeping in her own bed for the first time since arriving in Seattle on June 4th. I will call tomorrow for an update about how her trip home went and how she's feeling and post an update here in her blog.

I also have good news. Make that great news!

I just learned tonight that Matthew Nguyen received his stem cell transplant and is recovering at City of Hope Hospital in L.A. The match was not a 10/10 so it's likely he will suffer from GVHD but he now has a fighting chance of surviving the Leukemia that has been attacking him since his relapse in Feb of this year. Sending prayers his way and to the 24 year old anonymous donor who gave their stem cells to him.

After his first match backed out of making the donation to him in July he was reluctant to tell anyone about this donor until the transplant had taken place. More details here: http://teammatthew.org/blogs/?p=229

Happy Birthday, Tami!

Wendy here. Some of you might recall the blog post where I talked about being a potential donor for 3 different patients in the past.

When I was going to be a marrow donor and I was being prepared for what would happen, I was told that my marrow would be harvested in a hospital in Philadelphia, Pennsylvania and flown to the patient. Once the hospital and patient found out my marrow had made it on the plane they would throw a big party for the patient to celebrate the first day of the rest of their life. I always thought that was such a neat idea.

Happy Birthday to You...

Tami's nurses did something very similar! I was actually really surprised. Tami's nurses came in and sang Happy Birthday to her right before her stem cell transplant! I think the nurses have so much love and caring.

Just for fun Stacie thought this would make the event more festive so she photoshopped the picture to make it more "party" like. LOL this is how she pictured it in her head:

After her stem cell transplant was completed the nurses wrote Happy Birthday on the dry erase board in Tami's room.

I am just so happy for Tami.

The next step for Tami is to wait 2-4 weeks to see if the transplant was successful and are the stem cells going to engraft and begin making healthy new blood in after they settle into her marrow. We are praying hard for Tami!

Posted by Wendy. Learn more about her in this blog post

How is Tami Feeling

Today we learned some news regarding Tami and her potential donor. We've received word that the potential donor has been undergoing his pre-transplant health evaluation since the beginning of June. Her doctors have not received word yet if he has passed or if the testing is ongoing. Hopefully we will find out one way or the other soon. 

Assuming the donor is healthy enough to make the donation, Tami will receive her Hickman Catheter on Monday with her chemotherapy to begin on Tuesday and the transplant to follow a week later on Tuesday, June 30th. A Hickman Catheter is a type of central line that is defined as follows:

Getting a central line

You will get many drugs before and after your transplant. To make it easier to get drugs into your bloodstream, doctors use a central line. A central line is a tube that is surgically inserted into a large vein in the chest, just above the heart. There are many types of central lines and they may be referred to by different names. These include central venous catheter, Hickman catheter, Broviac catheter and others.

You will have your central line put in before you start your pre-transplant treatment (preparative regimen). You may have it put in when you enter the hospital or a few days or weeks before then.

The outside end of the central line may have two or three ports. IV tubes can be connected to these ports so that bags of drugs or blood products can be infused into a vein. With a central line you will not need to have a needle stick each time you get IV drugs. When you receive your transplant of bone marrow or cord blood cells, they will be infused through your central line as well. The central line may also be used to draw blood from the vein for blood tests.

Your medical team will use the central line often while you are in the hospital. You will probably still have the central line for a time after you leave the hospital. In the hospital, your medical team will keep the central line clean to try to prevent infections. You or your caregiver will continue to clean the central line if you still have it when you return home.

We will continue to update Tami's progress as well as that of her potential donor. It seems that everything is on the right track for now!! We hope things continue to go so smoothly.

Posted by Wendy. Learn more about her in this blog post

How Tami is Feeling

We have the latest news from the Fred Hutchinson Cancer Research Hospital. The last two bone marrow biopsies Tami had confirmed the diagnosis of Myelodysplasia. Obviously, this means Tami will need a donation. We are so thankful that she has found a match. Now we have to pray the donor is able and willing.

All of Tami's pre-transplant health testing is now complete. The remainder of this week she has appointments scheduled to receive back the results of all of the tests she's undergone since arriving at the Fred Hutchinson Cancer Research Hospital.

As of right now, Tami is scheduled to undergo 6 rounds of chemotherapy beginning June 23rd. If everything with the chemotherapy goes ok, her transplant is planned to begin the 30th of June.

We are still waiting to find out if her potential donor has begun his health screening tests. It is sort of frustrating not knowing about the potential donor, but I understand why they are protected.

Tami has been seeing her kids via webcam which is helping them to deal with her absence. It must be very hard to have your mom going through something so serious. It's almost too much for young kids to process.

Posted by Wendy. Learn more about her in this blog post

How Tami is Feeling

We have some new updates on Tami from Seattle where she is preparing for her possible transplant! Tami has undergone tests almost every day that she has been in Seattle. The doctors need to make sure she is well enough to undergo the procedure. Luckily, Tami's last test will be this week.

If the donor also passes all his health screening tests, Tami will begin chemotherapy on June 23rd. The chemotherapy will prepare Tami's body to receive the donation.

Unfortunately, some of Tami's new medications are making her not feel well. Hopefully, the doctors will be able to help but the medications the doctors give her are necessary.

Yesterday, Tami had a Fatburger for lunch. I know no matter how bad I feel, a burger always makes things not so bad.:)

Tami has had several visitors since relocating to Seattle and other family members arrived a few days ago to be with her while she undergoes her testing, chemotherapy, and recovery. I know having her family around her must be comforting. I'm sure it is a scary time for Tami, but also a relief that a donor has been found and all the testing is in preparation of the donation.

Posted by Wendy. Learn more about her in this blog post

How Tami is Feeling

I'm going to give a call up to Seattle today to see how Tami is doing.

I do know that she's had some fun visits with family and friends since arriving at The Hutch. 

I do know that her testing has begun. A bone marrow biopsy was taken last week. I don't know how long we have to wait for the results. 

I do know other blood work has been done. I don't know the results.

I have to apologize for not being right up to date at the moment but the past couple of days I've been in mourning for a friend and Levi, a very sick pup that I and a team of friends helped to save a year and a half ago.

I'll try to post later today. Until then please keep telling everyone you know they can join the marrow registry for free until June 22nd. The Be The Match Marrowthon is underway!

Posted by Stacie (Tami's cousin)

The Pre-transplant Testing has Begun!

Tami has begun her pre-transplant testing! The testing will take approximately 2 weeks. Then the potential donor will go through an extensive health screening to make sure he is healthy enough to be eligible to donate his stem cells. There is a 50% chance that the donor may be deemed ineligible to donate or may change his mind. On the truly incredible and miraculous front... A second 10 out of 10 marker match donor has been located for Tami. Her odds of recovery are getting better and better.

Once a donor has been deemed eligible to donate to her, there are still some tough obstacles Tami will have to overcome. She must endure several rounds of chemo before being able to receive a transplant. This is of course a debilitating process followed by a long recovery of several months.

Posted by Stacie (Tami's cousin)

Update on Tami

Tami is now at the cancer treatment hospital. She was to be admitted today as an outpatient. Yesterday upon her arrival she was surprised to find that her personal welcoming committee had already decorated her new place for her with photos of her family and some other personal touches.

Her kids are home with plenty of family there to help ease how much they will be missing their mom. I wish that the treatment hospital were closer so that they could see her each night. Hopefully the video camera has been set up so that they can "see" her already.

Hopefully I will  have more detailed information for you tomorrow :)

Thanks so much for checking in!

How Tami is Feeling

Well things are finally about to start moving forward for Tami. This week she will be relocating to begin her pre-transplant health screening. While this will be tough on her kids to not have her home, the great thing is that web cams now exist and will allow them to see and talk to their mom each day via the internet. We're also extremely thankful that Tami has a huge support base and between her family and friends there will be no shortage of help for her family while she is at the hospital. We really appreciate how this is something to be grateful for as not everyone is so fortunate.

Tami's counts have continued to rise the past week and her white blood cell count is almost back to normal. Her red blood cell count and platelet counts are still low though. Unfortunately even with her counts improving her overall energy level is still low so she hasn't had a lot of strength and continues to tire easily.

Big news on one of the PSA videos we're creating. Filming has begun on our "Smile, Swab and Spread the Word" video and I spent a day last week with Savadelis Films shooting several cameos including one with Congressman Mike Honda. We also filmed numerous cameos around Downtown Campbell. A special thanks to Chuck and Jewel Savadelis for volunteering their time, talent and efforts to this project for us.

Posted by Stacie (Tami's cousin)

How Tami is Feeling

We have some more information regarding Tami's numbers.  At her last blood draw Tami's platelet count had risen to 75!!  As you remember, that's up from 69 at her previous blood draw. Her white count has risen to 3.9 up from 2.7 at her previous blood draw! Unfortunately, her red count had dropped slightly. We will post those numbers as soon as we have them.

As of 5/26/09 - Tami's count followed by the normal ranges:
White Blood Cells 3.8 (4.0 - 11.0)
Platelets (150-350)

Back on 5/1/09 - Tami's count followed by the normal ranges:
White Blood Cells 1.7 (4.0 - 11.0)
Platelets 16 (150-350)

We are still unsure what is causing Tami's numbers to rise.  It will be interesting to see how the doctors explain the increase.  Whatever the reason, we are just so happy that Tami is lucky and her numbers are rising and not dropping!!

Posted by Wendy. Learn more about her in this blog post

How Tami is Feeling

On Monday, Stacie told us about Tami's platelet count rising to 56! It's even higher now at 69 platelets!! No one can believe the increase. We are still very unsure about why the counts are rising on their own. Remember she is still well below the normal range of 150-350 platelets.

Tami has experienced some indigestion but has been able to eat her meals on a normal schedule which is good. We want Tami to be able to keep up her strength!

If all checks out ok with Tami and the donor her chemotherapy is scheduled to begin on June 22nd and will most likely run for 8-10 days. This can be a very hard time for Tami. All people are different, but chemotherapy can be very, very hard on the body. We will definitely update Tami's progress through her chemotherapy.

Posted by Wendy. Learn more about her in this blog post

The Difference 25 Days Can Make

Today I spoke with my mom and learned that some of Tami's blood counts are continuing to rise.

To put things in perspective when Tami was released from the hospital on May 1st to become a daily outpatient her platelet count was at 16. Normal counts are between 150-350. Yesterday at her blood draw her platelet count was at 56, which is still far below the normal minimum but so much higher then it was just over 3 weeks ago.

Her white blood count on May 1st was at 1.7 with normal counts ranging between 4.0 and 11.0. So imagine my surprise when I found out that yesterday her white blood count was at 2.7! Again still below the normal range but the improvement is something we are all thankful for.

Her red count has not risen significantly but her doctors don't understand why her white and platelet counts are rising this way. I posted the other day that no change was seen in her last marrow biopsy taken two weeks ago. On the conservative side this makes us incredibly hopeful that Tami will pass her pre-transplant health screening evaluation to make sure she is strong enough to undergo the transplant procedure itself. On the optimistic side I can't help but wonder how much higher her counts are going to rise on their own.

At this point in time her doctors say she does still need a transplant. Though the improvement is good it isn't good enough to delay her need for a transplant or make a transplant unnecessary.

Posted by Stacie (Tami's cousin)

Another Marrow Match for Tami?

Well here's some news. I found out that there is a second potential marrow match for Tami. What I don't know is how good of a match is it. Is it an 8, 9 or 10 marker match? The closer to 10 the better. This is reassuring of course because if for any reason the first match is unable to donate due to health reasons or is unwilling... We won't necessarily be starting over at square one. 

The thing is, is that the closer this second potential donor is to a 10 marker match the better the odds of Tami's transplant being successful. So if we find out that this match is less then 10 we will still push forward to guarantee Tami the best odds she can have and try to find her a second 10 marker match if the first one doesn't move forward.

Also of importance is to note that even with two potential donor having been located it does not mean we can stop searching for Tami. There are patients who have to find multiple matches before one is able and willing to donate. I Know Nancy Sakakura had to find 3 matches and others have had to find 4 or 5 matches before finally receiving the stem cells or marrow they need.

A special thanks to Nancy for her help and reassurances that we are on the right track with all we are doing to help Tami. Sometimes it's easy to feel a bit lost or overwhelmed when one takes on a national marrow donor drive out of the blue (LOL) as we have. Her support has helped us immensely in times of uncertainty.

Posted by Stacie (Tami's cousin)