GVHD is Attacking Tami's Skin +62

Aw man. Just when it seemed like the worst was over Tami developed two infections and now it turns out the rash that appeared on her skin last Friday before I left Seattle is in fact the Graft vs. Host Disease making a second appearance.

You may recall the first time was a week after the transplant that Tami's intestines came under attack by the new donor cells. Now it's her skin that the donor cells have identified as "foreign" to them. You might remember that the donor cells don't realize they are in a new body so Tami's tissue appears to be the invader that needs to be attacked by the donor cells.

She is also still being treated with liters of fluid to flush a viral infection out of her system along with IV meds. I can't even imagine how she is feeling right now. I felt like I was kicked in the gut when my mom told me on the phone this morning. Hopefully the new meds will get this latest GVHD episode under control quickly. GVHD can be moderate to serious. I'm praying that hers doesn't go beyond moderate. SHE SO NEEDS A FREAKING BREAK!

Back in the Hospital. Again. *sigh*

Last night Tami was readmitted to the hospital to treat a viral infection that had flared up. The doctor's are hoping to flush it out of her system by running continuous hydration through her Hickman Catheter for at least 24 to 48 continuous hours. They are also upping her pain medication to a higher dosage so that she's more comfortable. This is such a bummer but as I keep mentioning, complications are, unfortunately, a normal part of post transplant recovery.

Gina, Tami, Greg and Joe

She did however also have fun yesterday when 3 of her colleagues came by for a very short visit right before we left for the hospital. Can I just say that they, and the rest of the entire company, have been absolutely amazing. Their caring and generosity, the messages and their unwavering support have left us quite speechless. We feel that Tami is absolutely blessed to be surrounded by co-workers who care so much about her and only wish every person facing a health crisis like Tami could be so fortunate.

And I have to say the doctors and nurses I met this week have been phenomenal when it comes to their kindness and concern for Tami's well being and helping her to understand what they are doing to help her. It was a nice surprise since I mostly hear horror stories (both in the news and from friends) about insensitive doctors who need to work on their people skills. That has not been the case at the Seattle Cancer Care Alliance or at The Hutch. I just wanted to tell them publicly that their attentiveness and sensitivity is both noticed and sincerely appreciated.

My First Visit with Tami in Seattle at the SCCA +57

Greetings from Seattle!

That's my mom with the water bottle, Tami and I yesterday in Seattle. Tami has had to wear her glasses lately because a medicine she was taking would have stained her contacts orange. And of course I had on my nerdy, anti-migraine, rose colored glasses because hospitals are full of fluorescent light and glaring windows.

I am in Seattle and so glad to be here. It's the first time I've seen Tami since February when she was in San Jose on business, 2 days before she was hospitalized, and a week before her diagnosis of Myelodysplasia. I saw her for dinner on Friday night and knew she had been dealing with exhaustion and anemia that at the time was being caused by an unknown condition. A bone marrow biopsy had been performed a few weeks earlier but no cause was found. She did seem very tired and that worried me greatly because she wasn't her usual self.

After learning of her Myelodysplastic Syndrome diagnosis a week later this was the goal: To find a marrow match and have a stem cell transplant at the Seattle Cancer Care Alliance, which is the treatment hospital that works with the Fred Hutchinson Cancer Research Center here in Seattle, WA.

Fred Hutchinson is where marrow transplants were invented and they are one of the top 3 transplant centers in the world. So I was thrilled when I learned that her case had been accepted. Her doctor in her hometown was in contact with the doctors at The Hutch and it was in Seattle that they conducted the marrow registry searches for her.

This is the building that houses the infusion clinic. Where Tami spent most of her day yesterday with tubes and bags attached to her Hickman Catheter. Yesterday she had to arrive at 8:45 and was there until after 3:00 pm receiving seemingly endless infusions of hydration, magnesium and medicine. When she finally got to return to her apartment she had another 8 hours of hydration infusions ahead of her.

And this is my mom. She has been Tami's constant care taker since this all began in February. Fortunately she is retired so she had no work conflicts in wanting and needing to be by Tami's side.

Also good is that the iPhone was invented and that she can now read books on her Kindle for iPhone's app so that she doesn't have to carry books around with her in her purse and she can play lots of video games while Tami is napping or too tired to talk.

Did I mention she HATES to have her picture taken? These are the only photos she approved for publishing. LOL

This was the view from her infusion room yesterday. The view the day before was better from the other side of the building but I forgot to take a picture :(

The hospital is full of some really gorgeous art pieces. This is a close up of a stained glass room screen near the elevators on the infusion floor. I believe Seattle has some of the finest glass artists in the world.

And this is a view of the Space Needle from the HWY overpass just outside of the hospital. Tami's apartment is only 7 blocks away from the treatment building so I hoofed it on up to get some much needed exercise. There are hills here like in San Francisco so you can get a real workout while you walk.

Today Tami has another day of infusions ahead of her at the apartment and a blood draw and meeting with her doctors to assess her progress. Hopefully no medicine today. The doctors think they have eradicated the bacterial infection she had contracted but now a viral infection she had before has flared up again. That's why she needed the medicinal infusion yesterday. I'll study up on it and give you a description of it tomorrow.

Still Fighting that Nasty Klebsiella Infection

Unfortuantely Tami is still fighting the Klebsiella infection :( Klebsiella typically localizes in one of two areas: In the lungs as a dangerous form of pneumonia or as a urinary tract infection. Tami has contracted the latter. She is receiving both the IV antibiotic as well as a drug called IGG to help boost her antibodies and immune system.

So today she is at the clinic receiving infusions for:

• IgG to build up her antibodies
• Antibiotics to help fight the Klebsiella
• Magnesium (continuing treatment)
• Hydration (had discontinued but is starting again)

On the good news front she is still off of the prednisone for her GVHD and after just one week her blood sugar levels are back to normal. YAY!

Cupcakes, YUM!!

As you all know, Tuesday was Tami's Birthday!!! Most of the comments to our post on Tuesday wishing Tami a happy birthday indicated that everyone hoped Tami was able to have a little cake. Tami has had problems with her blood sugar levels so we weren't sure whether she would be allowed anything sweet.

I'm so happy to update you and let you know that Tami was able to eat a cupcake on her birthday. These cupcakes look so good I wouldn't be able to pick just one:)

I think I'd have to pick the last one, if I could only have one. Tami was able to go to Trophy Cupcakes in Seattle to enjoy her cupcake. I just wish they shipped across the country.

Happy Birthday, Tami! I'm so glad you were able to enjoy a cupcake.

How to Launch a Bone Marrow or Stem Cell Donor Drive at MarrowDrives.org

As most of you know this blog and the Helping Tami website came about immediately after Tami's Myelodysplasia diagnosis in February of this year. It took me 8 solid weeks of talking to donor programs by phone (2 in Washington state, 3 in California, 1 in Hawaii and 1 in Massachusetts) and web surfing to build and finish her website and to figure out how to help by creating a donor drive effort.

I'm pretty web savvy and I found it overwhelming at times. There is a lot of great information out there but I found it scattered around all over the place. Even as I was soaking it all in I realized that many people would be thwarted by the lack of easily accessible information. So even as I was learning I was already planning in the back of my mind how to share this information with others in the future.

My goal is to make information packets available to transplant centers and doctor's offices nationwide so that as each new patient is diagnosed and is told they are in need of a marrow or stem cell transplant, they will be directed to the www.MarrowDrives.org website to learn how to launch a donor drive effort if they decide to publicize their need.

The www.MarrowDrives.org is still under development but there are already the first 6 steps I think most people should follow before launching their drive.

Many tutorials have been added and I will continue to add more ideas that I learn from other donor drive teams as well as ideas I think up on my own.

The tutorials are broken down into two areas: Online and Live In-person drive ideas. This way those who don't have computers or are not super computer savvy can still launch an effective local drive effort. Those who are web savvy can make use of all of the online suggestions And if there are enough volunteers ideas from both areas can be used.

Right now I'm working on my business card design. They will be part of the kits I'd like to make sure that newly diagnosed patients receive. This is the proposed front of the business card.

And this is the back of the business card.

The kits will also hopefully inspire other people to take up the cause within their place of work, worship or groups and clubs to launch donor drive efforts of their own. Because even if you don't currently know any of the 6000 Americans in need of a transplant, the odds are you will someday. There are many diseases like blood cancer and anemias that destroy a patient's marrow and their only hope for a cure is to find a willing and healthy marrow match. At this time 70% of patients in need will not receive a marrow match in time to save them.

It's Tami's Birthday Today!

Yay! Today Tami celebrates her Birthday! Funny how as you get older Birthdays seem to become less important to most of us. One year rolls into the next and in a card or phone call we usually commiserate the passing of time as feeling another year older, instead of celebrating that we made it to another year. Well for me that all changes this year. This year is the first year that I have been reflecting on how thankful I am that my loved ones made it through another year. And for Tami what a year this has been!

Don and one of her sons are in Seattle with her right now to celebrate. I only hope she is able to have some cake. Hopefully her blood sugar will allow her a little slice :P

So Happy Birthday Tami! Hope you have a great one. I know getting off of the Prednisone yesterday was all you wanted this year so your Birthday wish already came true.

With lots of love and hugs,

Stacie

Post Stem Cell Transplant: Day +48

I just received an email from Tami. In her own words:

Just took my last Prednisone med this morning. This is the nasty steroid that I've been taking for weeks for the GVHD. So, now I'm hoping that I don't have to go back on it and my blood sugars go back to normal.

The Prednisone had also been causing her to feel tired. Hopefully she will not need it again and will feel better now that she is off of it. So despite the bad news about the infection she just picked up, this is really great news.

She will also be receiving a blood transfusion today and then will be allowed to go back to her apartment. YAY!

Post Stem Cell Transplant: Day +47

So today is one of those good news/bad news days. Thankfully Tami's medical team caught the infection in its early stages during a routine blood draw. The bad news is that Klebsiella is a serious infection and not a good one for a transplant patient to pick up.

Her doctor put her on an IV drip antibiotic and expects that in a few days Tami will be able to return to her apartment. As of this morning she still didn't have any symptoms from the infection. But I'm hoping and praying that she doesn't have any type of serious reaction to the new meds she must take to get rid of the Klebsiella.

Post Stem Cell Transplant: Day +46

Man. Just when we thought Tami was sailing through her recovery... Some gram negative bacteria showed up in her blood draw Thursday evening. At 11:00 PM Tami received a phone call asking her and my mom to come back to the hospital so that they could begin administering antibiotics immediately.

She felt fine and had no idea that she had developed an infection. This is the most shocking to me only because her white blood cell count has been back in safe ranges for over 2 weeks now.

My mom wonders where she could have picked it up. Could it have been at the ball game? What if it was when they were out to lunch? Or out shopping? But her doctors had told her she could go anywhere and that walking and exercise are a necessary part of her recovery. So I guess this is just one of those things that come up during recovery. I mean a lot of people get infections while they are in the hospital so there's no sense in playing that ever annoying "what if" game.

She will be released soon and she can continue her treatment from her apartment. That's the plan for now. Will keep you posted and will let you know as soon as she is back at her own place.

Post Stem Cell Transplant: Day +43

LOL this picture is probably going to really surprise you. That's Tami at a Mariners' game earlier this week.

Tami won some Mariners tickets from her hospital so she and my mom had very good seats on the second level. Apparently there's a lot of food places up there and they had some very delicious pasta for dinner. It was a good game, but they left after the seventh inning so they could beat the crowd out.

Oh and the Mariners won :)

All in all Tami is feeling better and better. She is still receiving her hydration therapy and is still on the Prednisone for her GVHD. But not for much longer. The Prednisone has been tapered down in dosage over the past few weeks and soon they will try taking her off of it completely.

Save the Date, Silent Auction and Fundraiser

Want to have some fun? Bert Beattie is holding a silent auction and fundraiser to benefit The Leukemia & Lymphoma Society. The auction will be held on August 26th from 6:00 p.m. until 9:00 p.m. at Yankee Pier located at Santana Row: 378 Santana Row in San Jose, California. Tickets are $50 and include a 4-course dinner, silent auction, and raffle. If you would like to purchase tickets please visit Bert's website. Even if you cannot attend the fundraiser you can still donate to the cause. Bert is also looking for items and gift cards to be donated to the silent auction. Please visit his website to find out about donating an item. Any help you give is always appreciated.


Bert Beattie is in training to participate in the Pacific Grove Triathlon in September as a member of The Leukemia & Lymphoma Society's (LLS) Team In Training. The Team In Training are raising funds to help stop leukemia, lymphoma, Hodgkin lymphoma, and myeloma from taking more lives. Bert's stepfather was diagnosed with small cell Lymphoma over 10 years ago.



For 20 years now, The Leukemia & Lymphoma Society's Team In Training (TNT) has been a sports training program. Participants include first time athletes to seasoned athletes that train for marathons, half marathons, triathlons, 100 mile century bike rides, and hiking adventures.

Lance Armstrong's LIVESTRONG San Jose Army

Yesterday I stepped out of my ordinary by attending a Lance Armstrong Foundation (LAF) event. It was a LIVESTRONG open house in Cupertino, CA. The event consisted of networking and 3 guest speakers.

Clockwise from top left:
Leigh is an LAF Grass Roots Advocacy Trainer and was our emcee for the afternoon. Richard Tate is from HopeLabs a grantee whose company received funds from the LAF to help fight cancer. Giovanna Baldassarre is one of the local LAF grass roots leaders. And Jere is a 3 time cancer patient who is facing her stage 4 colon cancer with the kind of openness and humor that makes her an excellent educator and public speaker.

Dozens of us turned out interested to learn how we can help to raise public awareness about and/or become involved with the Lance Armstrong Foundation and all of the good work they do within our local communities.

In blue was Ronni Shehorn-Maestas who created the website Stepping Stones at www.IntroToCancer.com. I knew of Ronni through my colleague Mimi who is friends with Ronni's sister. Mimi and Ronni's sister have helped to keep me optimistic during Tami's ordeal with cancer as Ronni also received a marrow transplant at the same hospital Tami is being treated at. I didn't get to say hello in person but am sure that Ronni and I will meet again someday.

These shoes weren't made for walking.... They were made for kicking cancer in the ass!

And those shoes belonged to Jere Carpentier the standout guest speaker yesterday. Not only was she informative and entertaining, Jere is a 3 time cancer patient who has also suffered severe damage to her heart from a cancer treatment. After suffering from and surviving Hodgkins Disease and Lymphoma, Jere is now suffering from her third primary cancer, meaning this is a new cancer not an old one that spread, and has stage 4 colon cancer.

But she's not giving up. She is out there educating the general public and recently was asked to speak in Sacramento to help pass a bill to improve chemotherapy treatment options for patients in need just by sharing her own story. She's one of those truly special people, a doer, who even as she is so sick is accomplishing more then most healthy people on a day to day basis.

Richard Tate, Director of Communications and Marketing at HopeLab also spoke. His company has created a cancer themed video game called "Re-mission" for adolescents and teens suffering from cancer. You're probably wondering how a video game can help fight cancer right?

For most of us missing a pill will never have catastrophic consequences but for a cancer patient missing pill can become a matter of life or death. Giving cancer the tiniest foothold to reestablish it's presence must be avoided at all costs. Well studies have shown that the kids who play Re-mission are more likely to become pro-active patients taking their meds on time to help control their cancer and maintain the upper hand over their disease.

Their website says: Re-Mission is distributed by HopeLab to young people with cancer, their families and caregivers free of charge. As of April 2009, more than 142,000 copies of Re-Mission had been distributed to 81 countries worldwide.

To download or order a copy of Re-Mission™, visit www.re-mission.net.

And I made some great new friends. That's Peter on the left. He and his wife Patt Baenen-Tapscott, a cancer survivor, were kind enough to strike up a conversation with me to find out who I am and why I was there at the open house. Turns out they are very involved with the Lance Armstrong Foundation by running a series of practice time trials for those who compete in bike races or just enjoy hobby bike riding. The registration fee (usually $25) is donated to the Foundation. Their website and the time trials are called Beat the Clock & Help Beat Cancer. There's one more ride scheduled this year for August 29th so check it out if you're a cyclist :)

And thanks to Patt for all of the photos in this blog post. She was snapping away throughout the meeting and generously gave me permission to use her pictures for this post.

Hanging out with the LIVESTRONG team at the end of the meeting to learn more about how I and MarrowDrives.org, the new website I'm creating, can help others.

And on a side note: My new nerd glasses are awesome! The room the open house was held in would have normally triggered a migraine for me because of the glaring window light combined with the fluorescent lights overhead.

The glasses are tinted pink (3X) and have a non-glare coating (front and back) to prevent migraine and light induced headaches. Such a simple fix for a debilitating problem.

I've suffered from headaches and migraines for years and was digging around on Google to better understand how light triggers them when I discovered my condition is called "Photophobia" and this treatment balances out too much blue light by adding pink with glasses or contacts. The thing that bothers me most is that my own doctor never told me about them! I had to find out for myself by researching online. The optometrist I went to said this treatment was discovered about a decade ago. I've had them 4 days now and have not had a single headache. Apparently for most people they can prevent the headaches as well as make them go away instantly if you suffer from Photophobia.

The only downside is that because my vision is 20/20 my insurance wouldn't cover the cost of the glasses because they didn't have a prescription in them and apparently that is the only factor used to determine medical need. Am going to have to start complaining about that as clearly my need was medical! But no matter what they cost they are worth every penny. I didn't realize how often I was feeling bad until I felt better :)

Post Stem Cell Transplant: Day +40

Tami continues to recover from her transplant. When I call my mom she tells me not much has changed in Tami's current status. I know the recovery process is a long one but there will be significant moments we can look forward to. Among them the day her marrow biopsy says she has 100% donor marrow and all of her blood levels are back to normal, the day she is taken off of the Prednisone for her GVHD, the day her Hickman catheter comes out and of course the day she gets to leave Seattle to return home. Plenty of moments we will all be able to celebrate before we know it!

Vietnamese Marrow Donors are Urgently Needed August 6th-9th

With the help of multiple recruitment programs Team Anh is holding a massive marrow drive at Marian Days to save the lives of Vietnamese patients and particularly Asian patients of all ethnicities. Please look for their large orange sign, stop by and sign up. And tell anyone you know who is at Mraian Days.

Hosted by the Congregation of the Mother Co-Redemptrix in Carthage, Missouri. The 4-day Vietnamese Marian Days event consists of masses, conferences, adoration, concerts, food (lots of food) and much, much more.

For over thirty years, tens of thousands of Vietnamese Catholics have been making a pilgrimage to the small town Carthage Missouri in devotion to the Virgin Mary in a festival called Marian Days. Many at Marian Days attributed their miraculous survival from the Vietnam War and exile to Mary's divine grace.

This year, the Vietnamese people's spiritual journey grows. Asian marrow organizations, churches, and patient groups from all across the world are coming to Marian Days on behalf of the many Vietnamese patients suffering from bone marrow disease to ask the 60,000 attendees to join the National Marrow Registry.

Whether you or someone you know is attending the Marian Days in Carthage, Missouri or not, everyone can join the National Marrow Donor Program to increase the number of Vietnamese ethnicity donors to help the many Vietnamese in need here in America and around the rest of the world!

Please consider joining the National Registry in celebration of the Marian Days Event. If your are full, 1/2, 1/4 or even 1/8th Vietnamese your participation is needed. Did you know that fewer then 0.2% of the current donors in the registry are Vietnamese? That means that of them 7.4 million donors fewer then 18,000 are Vietnamese.

To order a FREE registration kit online go to the Asian American Donor Program website by CLICKING HERE. Registering is pain free and donating marrow is almost pain free. You can learn more about the donation process by CLICKING HERE.

These are just a few of the Vietnamese Americans who urgently need to find marrow matches before they run out of time.

Within every one of us is the power to heal, to save a life at Marian Days and all across the country. 

To locate a live marrow drive in your area please visit the Be The Match website and enter your zip code. 

Post Stem Cell Transplant: Day +35

Tami has no more abnormal or Myelodysplasia cells! Is that great news or what? This is what the bone marrow biopsy from last week has shown. Her RBC (red blood cell) count is still a little lower then normal and some of her other counts have dropped slightly in the past few days. Tami will need a blood transfusion today but it's been weeks since her last one so we're very happy that her need for them is becoming fewer and further between.

White Blood Count - 9.06 (normal 4.0 - 11.0)
Red Blood Count - 3.59 (normal 3.8 - 5.2) this count was from 7/23. My mom has not given me a more recent RBC.
Platelets 167 (normal 150-350)
Hematocrit- 26% (normal is 38% for women and 46% for men)

Also note her new white blood cell count. Tami is well out of the neutropenic stage where random infections can become life threatening. I can't tell you how relieved I am to hear this number in particular keeps going up :)

There are continuing issues with Tami's blood sugar level most likely due to the Prednisone she is receiving to control her Graft vs. Host Disease. Because of this she needs to check her blood sugar 4 times a day. Occasionally she does need to receive insulin to balance her sugar level. Her doctor has said this condition will most likely go away once she is able to discontinue the Prednisone.

That's all for today. I'll post again as soon as I have more new information.

What a View

What a gorgeous view this is. Saturday night Tami went up to the roof of her apartment to get some fresh air. This was her view so she decided to take a picture to share with us. I think it's great Tami can get up on the roof of the apartment. I bet it's cool and this sight is so beautiful and peaceful. I would imagine it is relaxing for Tami.