Post Stem Cell Transplant: Day +31

Some of the test results from Tami's bone marrow biopsy are back and her marrow is now 99% donor marrow! This is really fantastic news. Her Doctor said that he expects it will be 100% the next time they do a marrow biopsy.

Tami does need to up her hydration. Each day she receives fluids: saline in the mornings and magnesium hydration through her catheter at night. It was 1 liter per day before, I don't know what the new amount will be but I'll let you know when I find out.

The temperature the past few days have been hot, still in the 90's. Not a typical summer in Seattle.

Post Stem Cell Transplant: Day +29

Today was a big day. Today Tami had her first visitors (aside from family) in quite some time. She was tired but glad to be able to have a short visit with some of her best friends.

Her hip was sore from the bone marrow biopsy draw but that should feel better in the next few days. It will also take several days to get the biopsy results back to find out how her engraftment is progressing.

And here's the really fantastic news: Her white blood counts are now within the safe range so her risk of general bacterial, viral or fungal infections is now low. In fact I think her counts are pretty phenomenal so soon after receiving her transplant. I can still recall being so worried when her platelet count was at 16 back in early May... And now she's already back up into a normal range.

White Blood Count - 6.85 (normal 4.0 - 11.0)
Red Blood Count - 3.59 (normal 3.8 - 5.2) this count was from 7/23. My mom was not able to locate a more recent RBC when I talked to her today.
Platelets 181 (normal 150-350)
Hematocrit- 34% (normal is 38% for women and 46% for men)

And as you can see Tami's hair is now gone. First she cut some off then when more fell out she went ahead and had the rest shaved. I think she looks super cute in her little skull cap. My mom said she has several hats that she can wear when she feels like it. It's just unfortunate that with Seattle's current 100+ degree heatwave hats are probably not as comfortable to wear the past few days if she goes outside into the heat.

Having seen this photo of Tami though I thought it would be nice to update her flirty illustration and as her hair grows back I'll reflect it by adding hair back to her illustration here :)

We'll keep you posted on when Tami will be up for more visits. The thing is even short visits wear her out right now but I was glad to hear she was able to visit with some friends. Nobody could ask for a better caretaker to be there with them each day then my mom but I'm sure it was nice for Tami to see some fresh faces. After all she's pretty much only seen my mom's face day in and out since late February. LOL :) I talked to my mom today and found out she has been reading books on her Kindle for iPhone app. while she spends time at the hospital each day with Tami and even reads her phone at night. She loves it! I thought it would be tedious to have to scroll, scroll, scroll so much but she doesn't mind at all. She said having the backlit screen makes it so easy to read :)

Post Stem Cell Transplant: Day +28

Tami continues to feel better. Her white blood count is high enough now to make it safe for her to go out in public. Most of the time she is too tired to try but today she and her Auntie June walked to a restaurant for lunch! Tami had fish and chips and said they were good. It was really hot in Seattle today, 95 degrees but they walked on the shady side of street.

The bone marrow biopsy results will take several days to get back. Hopefully it will show her engrafting is well underway. Her daily blood counts continue to rise so we are very hopeful that it will be very good news.

Tami's Graft vs. Host Disease remains under control. We're praying that it is responding well enough to the treatment that she won't require long term treatments for this. Some patients need to be treated for GVHD for years (2-10 years) after their transplants :( We'll know soon if she will need further treatments or not.

All in all this was a very good day :)

Post Stem Cell Transplant: Day +27

Tami is doing better and better. She is suffering from high blood sugar at the moments so for those of you who want to send her cookies and treats we'll have to ask you to wait a little longer...

Since returning to the apartment on the hospital campus Tami has been sleeping well at night. She can eat anything though food still doesn't taste right due to her Mucositis. Tami goes for at least a couple of walks a day and is working hard to regain her strength.

Due to the chemo she received prior to her transplant Tami cannot be in direct sunlight so she must either slather on the sunscreen or stay covered up. This sensitivity to sun may last for several months.

I can't tell you how great it feels to receive these very positive updates on Tami's day by day status. Actually I'm certain all of you are as relieved to read them as I am to type them out!

Michelle Maykin is in Peace

Michelle and her husband Van just a couple of weeks ago while she was still healthy enough to enjoy a weekend getaway to Carmel.

At 27 years old and after fighting two long, hard, courageous years against her treatment resistant Acute Myeloid Leukemia, Michelle is now at peace.

It is with the heaviest heart and a lot of tears that I want to share the sad, sad news that Michelle Maykin has passed away. Those of you who read Tami's blog on a regular basis will remember Michelle from some past posts we've created.

• Project Michelle is a success for patients needing a donor
• Graham is Gone and Michelle's Prognosis: 4-6 Weeks
• PLEASE HELP: Michelle's Need is Critical

This was Michelle before Leukemia took control of her bone marrow and took over her life. Can I just tell you that I HATE CANCER!

On June 29th Michelle's husband Van posted on her blog that the doctor had told Michelle earlier that week that she had 4-6 weeks left. For days after I am certain that hearts broke all around the world for this very special girl, her devoted husband Van, her adoring family, her best friend Mabel and everyone lucky enough to have known her. Three weeks and five days later, surrounded by their love, Michelle passed away and was finally released from all of her pain and suffering.

When I first found the Project Michelle website in February there was so much hope that she was going to take back her life and was going to have her future.

This photo with her mom says it all. There is Michelle with Leukemia looking absolutely gorgeous. I've said it before but I'll say it again that Michelle's beauty was through and through, not just skin deep. It radiated from within her and touched and changed the whole world making it a better place for anyone fortunate enough to know her. And thanks to her blog and website people will continue to meet and know Michelle for decades to come.

Michelle, Van and Marshawn.

Realizing she had only so much time left, her family and best friends took her on a weekend retreat just over 2 weeks ago in Carmel, CA. There they stayed in a beautiful house alongside the Pacific coastline tucked in the forested hills. The following photos are from a slide show on her blog that she wanted to share with her readers...

Michelle's view of Carmel, CA

To read her blog it seems like everyone knew this would be a final trip and an opportunity to be together in the most normal of circumstances for perhaps the last time. I think this photo epitomizes Michelle so well. Full of life, upbeat and celebrating the good parts even while being forced to deal with the bad.

Michelle was alway surrounded by love whether at home or in the hospital. She had her family, friends and because she was so willing to go public with her story, to share and to educate, she also had strangers all around the country and world who knew her and were all pulling for and praying for her.

Michelle and her pup Marshawn

Michelle and Van.

As a direct result of Project Michelle's donor drive recruitment efforts with the Asian American Donor Program over the past 2 years since her diagnosis:

• 4 donors have been matches for patients in need and have donated their stem cells!

• 15 others are in the process of being tested to be donors.

• 110 individuals have been identified as possible matches for patients in need.

Michelle's legacy will forever be one of never giving up hope and saving the lives of others. The cancer may have taken her life but it didn't take her spirit. Michelle was fighting to the very end. Her best friend Mabel says in her blog that right up to the end she was cracking jokes, making everyone else laugh.

To honor Michelle please help to spread the word to others you know about the Marrow Donor Program particularly those of Vietnamese and Chinese descent. Educate them, explain to them the need and donation process. Ask them to register to become a potential donor. I am absolutely certain that wherever she is, Michelle will smile each time another person joins the registry.

They can learn more at Tami's Website or at the www.AADP.org so please send them one or both links.

Post Stem Cell Transplant: Day +25

The Mucositis pain in Tami's mouth and throat is finally gone! YAY! There are two lingering side effects though: One is that her taste buds are not quite right and everything she eats tastes "pasty." The other side effect is that her mouth continues to feel too "sticky." But thankfully she is pain free these days. Exhausted from her meds but pain free.

While Tam's blood counts continue to improve she will most likely remain in Seattle for at least two more months. This is typical post transplant for patients to remain near their treatment hospital for several months following their transplant.

Tami also continues to need to hydrate her one liter per day. Still not sure how long she will need to do this for but I'll let you know when I find out. Have not been able to speak to my mom for several days to find out more details but will try again tomorrow.

Tami is not up for visits at this time.

Post Stem Cell Transplant: Day +24

I will call Seattle tomorrow to see how Tami is doing.

Sorry but Tami is not up to visitors at this time.

Project Michelle is a success for patients needing a donor

Back on May 17, 2009, we told you about Michelle Maykin in this blog entry. Michelle is suffering from a treatment resistant Leukemia. We were able to update Michelle's status on July 4th in this blog entry. As you can see, things have become very critical for Michelle.

If there can be any good news in Michelle's story, it is the other patients Project Michelle has been able to help while trying to find a donor for Michelle herself.


As you can see below, as a direct result of Project Michelle's efforts, four patients have actually been matches for others in need and donated their stem cells!! Fifteen others are in the process of being tested to be donors and 110 individuals are possible matches. Those statics are just amazing!! Project Michelle has been able to help so many people in need.

Now, we are praying Michelle is able to find the match she needs. Words are not sufficient enough to thank Project Michelle for all their hard work and dedication.

You can continue to check Michelle's status via her blog.

Post Stem Cell Transplant: Day +23

Tami's blood counts remain good.

Sorry but Tami is not up to visitors at this time.

Another cancer patient needs our help

Up until 2005, Kim Mower was running her own business, Kim's Key Lime Pies and Coffee Shop, on Solomons Island in Maryland and raising her two children as a single mom. Her baking supplied the restaurants on the island with desserts. Then in that year tragedy struck when she was diagnosed with breast cancer. I can't even begin to imagine how devastating such a diagnosis would be. For 11 months, Kim was required to travel to Balimore, Maryland to receive treatment.

Kim was lucky that the restaurants she supplied with her desserts were willing to work with her and take whatever good she could produce and luckily the town helped cook meals for her and her children.

Unfortunately, Kim's cancer has relapsed and has now spread to her bones. Kim's treatment including chemotherapy is very costly.

On Sunday, August 2nd, beginning at 1 p.m. a benefit will be held for Kim at the Tiki Bar located at 81 Charles Street, Solomons, Maryland. There will be 2 stages of Live Entertainment, on site seated massages available, hot dogs, hamburgers and a pig roast. It will be a great day of fun and you will be helping Kim pay for her expensive treatments that she needs.

You can find all the information regarding the cancer benefit for Kim by joining the Facebook group or through the Tiki Bar's website. If you cannot attend the fundraiser you can also make donations for Kim by mailing a check to the address found here.

Kim and her children could use all of our prayers, thoughts, and monetary donations that we are able to give at this time. It is very important.

Post Stem Cell Transplant: Day +22

Apparently the Mucositis is causing Tami's mouth to feel sticky and her meds are responsible for making her taste buds not work properly. Many foods don't taste right and some that should taste good taste bad. Despite this Tami is eating an ok volume of food.

She is also using the hydration machine to make sure she receives her intake of 1 liter of fluid per day. I've asked for a photo of the machine just out of curiosity and will post when I receive it.

Today she went for a short walk outdoors. Exercise is very important in her recovery so this is a good thing. I think she was going to try to get at least one more short walk in later today.

Visitor Status: Tami is not up for visits at this time

Post Stem Cell Transplant: Day +21

The hydration people came to her apartment yesterday to show her how to use the equipment. I haven't heard how that went yet this morning so I'll try to update later today.

Yesterday Tami's blood counts did rise again so that's more good news. I will try to find out what her counts are and give you a comparative to "normal" counts to give you a better idea of where Tami is at in re-establishing her immune system, etc. I do know it takes months, not weeks, for this to happen so it will be a an ongoing process. 

Thanks for all of the messages for Tami via her contact page on her website. She really appreciates them.

Visitor Status: Tami is not up for visits at this time

Post Stem Cell Transplant: Day +20

Last night Tami spent her first night back in a regular bed in a regular room. I'm told she slept well without all of the hospital noise and especially with no nurses coming in to check on her and poke for her samples during the night. 

I know some of you would really love to come visit Tami as soon as possible but at this time she is simply too tired for visitors. The Prednisone being used to treat her Graft vs. Host Disease may be the biggest culprit in making her feel so tired. I promise to keep you apprised as soon as this changes as I'm also certain that being able to see her friends and family members would do her a world of good.

Personally I want to wait to go see her until her white blood counts have improved even more. Tami is still susceptible to random infections so the fewer people she is exposed to right now the less chance of her picking up a bacterial, viral or fungal infection.

You are as always, welcome and encouraged to send Tami messages via her website for now. When she is up to it she goes through and reads them in batches. CLICK HERE if you would like to send Tami a message.

Thanks so much for checking in! It feels so great to have good news to report.

Visitor Status: Tami is not up for visits at this time

Post Stem Cell Transplant: Day +19

This afternoon Tami will leave the hospital for the first time in weeks since her transplant began. She will continue to go in to the hospital each day for blood tests and transfusions as needed but her overall progress is so good that she can now move back to her on campus apartment! This is a very significant step in her recovery and we are just thrilled. 

The steroids for her Graft vs. Host Disease are still exhausting her and they are expecting her to be on them for at least three more weeks. But as they taper down the dosage she should begin to feel better bit by bit.

Team Haupt Donor Drives

'Daily Show' host Jon Stewart aids fan suffering leukemia, promotes bone marrow drive
BY ELIZABETH HAYS
Daily New Staff Writer

Funnyman Jon Stewart is pitching in to help a fan with something that's no laughing matter.

The "Daily Show" star heard a big fan (Jonathan Haupt) is fighting leukemia and is doing his part to cheer him up - and urging New Yorkers to show up at a bone marrow drive Sunday.

Read the Rest of the Article


Team Haupt is also hosting bone marrow drives in the following cities across the country. To sign up or volunteer please CLICK HERE:

Natick, MA
Saturday, July 18 • 11:00 AM to 3:00 PM
Belkin Lookout Farm
89 Pleasant St. South
South Natick, MA 01760

Boston, MA
Sunday, July 19th • 10:00 AM to 4:00 PM
Holiday Inn Brookline
1200 Beacon St.
Brookline, MA 02446

Baltimore, MD
Sunday, July 19th • 3:00 to 9:00 PM
Ryan’s Daughter Irish Pub and Restaurant
600 East Belvedere Avenue ~ in Belvedere Square
North Baltimore, MD 21212
Live music 5:00 to 8:00 PM ~ Arts & crafts for children

Silver Spring, MD ~ Washington, DC
Sunday, July 19th • 9:00 AM to 12:00 PM
Young Israel Shomrai Emunah of Greater Washington
1132 Arcola Ave.
Silver Spring, MD 20902

New York, NY
Sunday, July 19th • 10:00 AM to 4:00 PM
Birthright Israel NEXT, NY in partnership with JEC Reunion
38 W 13th St.
New York, NY 10011

Monday, July 20th • 5:00 to 9:30 PM
Bais Yaakov of Boro Park
Simcha Hall – Use Elevator
1371 46th St.
Boro Park, NY

Tuesday, July 21st • 2:00 to 9:00 PM
Chesed Center
271 Kingston Ave.
Brooklyn, NY 11213

St. Louis, MO
Sunday, July 19th • 10:00 AM to 2:00 PM
Bais Abraham Synagogue
6910 Delmar Blvd.
University City, MO 63130

Long Island, NY
Thursday, July 23 • 3:00 to 9:00 PM
South Shore Bikur Cholim Blood Drive
Merrick Jewish Centre
225 Fox Blvd.
Merrick, NY 11566

Albany, NY
Friday, July 24th • 1:00 to 6:00 PM
Colonie Memorial Town Hall
534 Loudon Road
Newtonville, NY 12128

Rockville, MD ~ Washington, DC
Sunday July 26 • 10:00 AM to 4:00 PM
JCC of Greater Washington
6125 Montrose Rd.
Rockville, MD 20852

Highland Park, NJ
Sunday, July 26th • 10:00 AM to 5:00 PM
Congregation Ohav Emeth
415 Raritan Ave.
Highland Park, NJ 08904

Post Stem Cell Transplant: Day +18

Tami's Neutrophil count is at 500! If she is feeling ok tomorrow Tami get's to become an out-patient again! When a transplant patient's blood Neutrophil count reaches 500 it means they are successfully engrafting and the new donor cells are producing lots of white blood cells, enough that their immune system is strengthening. In transplant patients doctors want to see a Neutrophil count of at least 500 for 2-3 consecutive days. Tami is there so tomorrow she will be released from her hospital room, if she feels up to it, and will once again live in her apartment on the hospital campus. She will continue to need daily monitoring and will catch the hospital shuttle to go in for blood draws and transufsion etc. But reaching 500 is a milestone moment for any transplant patient! YAY!

It's normal for all patients to feel some ambivalence at leaving the safe environment of the hospital itself with all of the staff and treatments so close at hand. Tami is feeling slightly anxious about this but her doctor has assured her that this is a normal feeling that most patients go through. I'm sure as soon as she's able to sleep well with none of the distractions that her hospital room had, nurses coming in to take readings, etc., she'll love relaxing back in her own space again.

Post Stem Cell Transplant: Day +17

Well good news in that the Mucositis is finally going away bit by bit. Yesterday Tami ate part of a chicken salad sandwich for lunch and some salmon for dinner. So YAY!

Her stomach was bothering her again last night and today her sinuses are. I know it seems like it's often one step forward and two steps back lately but she really is getting better and as her doctors keep telling us, they are very pleased with her progress to date.

Her counts are up today but she is receiving a platelet transfusion.

And I quote "Everything looking good."

Tami is still not up for visitors but we'll let you know as soon as she is. I know some of you would really like to drop by to see her.

With Early Detection 98% Survive Breast Cancer

And with late detection 73% won't survive.

Have statistics ever been more clear than that? Does that make you want to go for a mammogram? Do a monthly self breast exam? It should. I hope it does.

I had my first mammogram 1998 and my second in 2006. What else can I say to encourage you? To motivate you? To get you to pick up your phone, call your doctor and schedule a mammogram?

No insurance? Your community might have free mammogram programs. Just go to Google and search free+mammograms+city+state that you live in. Also CLICK HERE to locate a free Planned Parenthood Mammogram Program Nationwide. Or check out this list to locate other free programs. The link is from 2003 but I suspect most of these programs are still ongoing or they can let you know who to contact if they no longer offer free mammograms.

You can also visit THIS SITE to help other women in need receive a free mammogram...Just a click every day. (Thanks to Michelle for sending me the link)

You can help to spread the word. To print this poster and hang it at your place of work, on a community bulletin board or anywhere you think people will see it CLICK HERE.

If you have any questions about what a mammogram is like send me a private message or leave me a comment in this post. I can answer you based on my own experience or ask the experts. Just reach out and let me know how I can help you to get tested.

CLICK HERE to learn more about the American Cancer Society Action Cancer Network.

Post Stem Cell Transplant: Day +16

Today's good news is that Tami's mouth is finally feeling just a little bit better but the bad news is her blood counts have dropped a bit. If her blood counts are still down tomorrow they will give her a medicine to try to help boost them.

Today Tami was able to eat some oatmeal and grape juice for breakfast.

She is really fatigued from the medications and is resting a lot.

Sorry but Tami is not up to visits at this time.

A Silver Lining in GVHD

Tami's doctors are continuing to assess her response to the Prednisone to control the Graft vs. Host Disease. They are hoping to reduce the dosage as soon as possible as the Prednisone will delay her ability to fight off infection and infection in someone who is immunocompromised can become catastrophic.

From the Fred Hutchinson Website:

Patients who show gastrointestinal symptoms of the disease usually receive a two to four-week course of high-dose systemic prednisone therapy that is then tapered slowly. However, that treatment is a double-edged sword. On one hand, it is designed to suppress the donor cells so GVHD can be controlled. But suppressing the immune system also makes patients more susceptible to potentially fatal infections, so the less time spent on a high-dose treatment, the better.

GVHD can become a long term condition and now that Tami has been diagnosed with it she may have to continue to deal with it for many years to come. I've read that patients often battle it in the short term for as few as 2-3 years and long term for as many as 5-10 years.

So the Good News is What?

I know this is hard to believe but there is good news in Tami developing GVHD. Patients who suffer GVHD and overcome it, benefit from a reduced risk of relapse of their cancer. This is because the same cells that cause the GVHD are also known to fight cancer cells so if she were to begin to relapse her new stem cells may be able to eliminate the cancer cells before they take over again. So at least there is a silver lining for all of the stomach pain Tami has suffered through up until a few days ago.

Post Stem Cell Transplant: Day +15

The new donor cells continue to engraft! YAY!

The doctors believe neither the Mucositis or GVHD will worsen at this point. The Mucositis will just take time to go away following the final dose of anti-rejection meds on day +11 and the GVHD is responding well to the Prednisone.

Today I'm going to ask my mom if there is a way to send anonymous thank you cards to Tami's donor. I'll keep you posted on what I learn.

Update 5:00 pm: Today has been a quiet day of rest for Tami. Her meds are making her very drowsy so aside from a red blood transfusion she's been able to take it easy.

Update 7:25 pm: Unfortunately Tami's throat was still sore today. It is the physical act of swallowing that causes the pain :( 

Due to the high risk of infection and her physical discomfort, Tami is not able to have visitors at this time.

Post Stem Cell Transplant: Day +14

Due to the high risk of infection and her physical discomfort, Tami is not able to have visitors at this time.

Yesterday Tami had a small platelet transfusion. Her doctor says she is doing well but she feels just terrible.

Yesterday her throat became so sore she could hardly swallow even the softest of food. She is also now experiencing discomfort in her sinuses. It isn't clear if this is because of the mucositis or another reason so I will try to find out and let you know.

Update 5:27 pm:

Tami was feeling a little better today. She had some scrambled eggs, cream of rice ceral, apple sauce (for the meds they crush for her) and juice for breakfast! She didn't eat it all, only about half but that's really good considering how sore her throat and mouth are.

Her eyes even felt better today.

Her blood counts are continuing to rise so that is great news!

Also her doctors have stopped the feeding through IV as of today and stopped giving her meds through the catheter and instead are putting her back on pills. This is also significant that they feel she is doing better.

post Stem Cell Transplant: Day +13

Due to the high risk of infection and her physical discomfort, Tami is not able to have visitors at this time.

Engraftment: The good news: Tami's white blood cell count is rising. It's still far below the normal ranges but the fact that it is going up and not staying the same or going down means her new marrow is now producing new blood cells. According to the National Marrow Donor Program website engrafting is measured by a particular type of white blood cell count called Neutrophils. There is also a specified count for platelets that when reached is considered another sign of engraftment. We have not received word regarding Tami's neutrophil or platelet counts but hopefully we will in the next week or so.

Mucositis:
Oddly drinking liquids is proving to be more painful for Tami then eating soft solid foods. It will take some time for her mouth and throat sores to go away.

GVHD:
For now Tami will remain on the Prednisone to control the GVHD. If she shows enough improvement by this time next week her doctors may lower the dosage she needs to be on.

Vision:
Unfortunately Tami's vision has been effected possibly by the transplant itself, the GVHD or even some of the medicines used to help her. Her vision is now blurry but this is a known side effect (usually temporary) that may take anywhere from a few months to as long as a year to resolve.

Despite the GVHD, Mucositis and blurred vision, the Doctor is happy with Tami's progress.

UPDATE 1:43 pm:

Ok let's get the bad news out of the way first because there's lots of good news today!

Tami is still in a discomfort from the mucositis. But the doctors have said it shouldn't get any worse then it is right now. It will take time for Tami's mouth and throat sores to subside but it's good to know she shouldn't be getting any new ones. This is because of her receiving the final dose of anti-rejection medicine on day +11.

Engraftment: The donor cells are engrafting! This is great news. It means that the transplant itself was successful and the donor cells are creating new white blood cells, neutrophils and platelets. Tami's counts are rising slowly but they are rising. YAY! When her neutrophil count reaches 500 for 2 consecutive days she will be allowed to leave the hospital and move back to her apartment on campus as an outpatient. She will still return to the hospital each day for tests, etc.

Vision: I also found out that the blurriness she is suffering from isn't too severe. Hopefully it will self-correct before too long. 

Thank you for all of the messages you all have been sending to Tami and myself. They are very much appreciated. 

Hope I have more good news to share with the next update.

Post Stem Cell Transplant: Day +12

Due to the high risk of infection and her physical discomfort, Tami is not able to have visitors at this time.

So, I found out that Tami is still eating some solid foods but also needs the TPN nutrition supplement until she can eat more. She did eat three meals yesterday, oatmeal for breakfast, something for lunch and clam chowder for dinner. 

She also got some exercise in walking around the floor which is good because the doctors want her to walk as much as possible as it will help in her recovery.

She did receive her final scheduled dose of the immunosuppressant yesterday so her mucositis mouth and throat sores may continue to worsen for a few more days but if she doesn't need any more of this particular medicine this particular side effect may linger for a few days but then should begin to lessen moving forward.

So in general this was a very positive update I received late last night. I'll post this morning's update when I receive one. 

Post Stem Cell Transplant: Day +11

Diagnosis: Tami has Graft vs. Host Disease

Due to the high risk of infection and her physical discomfort, Tami is not able to have visitors at this time. 

Those of you who know me know that I am always pretty direct when it comes to, well, everything. So that is how I will explain what is going on with Tami's diagnosis of Graft vs. Host Disease.

Yesterday her doctors received back biopsy results that showed she does in fact have GVHD. The T-cells that were present in her new donor cells are currently attacking her small intestines because they don't realize they are now in another body. They think Tami's cells are intruders that must be destroyed, so that is what they are trying to do. There's no other way to describe this other then as bad news. How bad remains to be seen. GVHD can be mild (a minor setback) to severe (life threatening).  

Most often immunosuppressants and high-doses of steroids are used to slow the donor T-cells from attacking the patients own cells and body. The goal is to suppress the donor cells immune system without damaging the new marrow.

I've been mentioning day by day that it would not be unexpected that Tami might develop GVHD as I've read that up to 80% of transplant patients do develop it to some degree.

What is shocking is that Tami has developed the condition roughly a week after her transplant. This almost never happens. The typical timeline is 100 days with the earliest cases presenting at 20-30 days. Either way engraftment has already begun when most patients experience the onset of GVHD. 

Like me you are probably wondering if the early onset of GVHD is going to in any way effect Tami's new donor cells ability to engraft and begin forming healthy new blood cells and platelets in her body. I don't know but am going to do my best to find out.

Tami has skipped all of the most typical symptoms of GVHD like vomiting, diarrhea and skin rashes. Instead she has gone straight to a problem with a major organ. Thankfully her doctors already started her treatment last night at 5:00 pm. With just one treatment of Prednisone Tami noticed immediate improvement with the reduction of pain in her stomach area. 

Good News
All of the other tests that have come back so far have been negative for infections. This is great news.

While I would love to jump on a plane today and head up to Seattle to see Tami in person and give her moral support I know the best thing for her is to keep away until she is on the mend. Right now the Prednisone and Immunosuppressants leave her extremely vulnerable to infection by bacteria, fungus and virus'. What is normally an ordinary infection that would take a healthy person days to recover from can become a battle of life and death for anyone with Leukemia or Myelodysplasia who is neutropenic due to low white blood cell counts, especially for someone who has undergone Chemo and particularly for those under treatment for acute GVHD :( Since Tami is 3 out of 3 of those descriptions I don't dare risk exposing her to any random germs until she is going to be healthy enough to deal with them.

TPN

Also Tami has begun receiving nutrients through her Hickman Catheter. Total Parenteral Nutrition (also known as TPN) supplies all daily nutritional requirements. It is a solution that will relieve Tami of needing to eat while her mouth and throat are sore from the mucositis.

I hope later today I have some good news to share with you in an update.

Update 7:10 pm: Tami's stomach is still sensitive but yesterday's full dose of Prednisone helped enough that today she only received a half dose.

Tami did need a platelet transfusion today.

Hopefully tomorrow will be a better day for her.

International Donor Organizations

We have recently updated the International Donor page on Tami's website. Getting as many people all over the world to register to be bone marrow and stem cell donors is very important.

Do you know anyone who lives in:

Argentina
Armenia
Australia
Austria
Belgium
Brazil
Bulgaria
Canada
China
Croatia
Cyrprus
Czech Republic
Denmark
England
Finland
France
Germany
Greece
Hong Kong
Hungary
India
Ireland
Isreal
Italy
Japan
Korea
Lithuania
Mexico
Netherlands
New Zeland
Norway
Poland
Portugal
Russia
San Marino
Slovakia
Slovania
Singapore
South Africa
Spain
Sweden
Switzerland
Taiwan
Thailand
Turkey
United Arab Emirates
United Kingdom
Uruguay

Why am I asking? Because they all have marrow donor programs. If you, your friends, colleagues and family members tell people they know who live in these countries about their donor programs and ask them to get registered and join, they may very well help to save someone in another part of the world.

The Be The Match Foundation for the National Marrow Donor Program states that 51% of marrow matches now take place internationally where the donor and patient live in different countries. So we can all help to save someone in our own backyard or on the other side of the planet.

There are so many people that do not live in the country they were born in or the country of their ethnicity. And, there are so many people of mixed ethnicities. The best chance to find every single person who needs a transplant a match is to get as many people as we can from all over the world to join their national registries. Please send this link by email or call every person you know telling them about this page on Tami's website and urge them to locate and contact their local donor program to get registered.

Thanks! We really appreciate all the help we can get to spread the word.

Post Stem Cell Transplant: Day +10

Sorry but Tami is not up for visitors at this time.

The good news is Tami won't need a transfusion today.

The bad news is her throat is very sore both from the mucositis which is now in her throat and mouth and from the endoscopy scope down her throat yesterday.

The pain in her stomach is the same as yesterday. The endoscopy showed mucositis in her esophagus and some light swelling in her small intestines from the chemo.

We are waiting for the results of many other tests to try to pinpoint what is causing her severe abdominal and stomach pain.

Tami will get a PAC pump today so she can self medicate for her stomach pain :(

Update 11:04 am: I just found out that because of the endoscopy the doctors don't think GVHD is the problem. They do not know what is though. Hopefully the test results we are waiting for will show them.

I also found out that unfortunately the mucostiis (mouth sores similar to canker sores) in Tami's mouth is not subsiding but is spreading and worsening. She may soon have to be fed through an IV. Today she did manage down some oatmeal and applesauce but I'm pretty sure she needs more nutrients then that so it won't be a surprise to hear that they are moving on to giving her nutrients directly through the IV if and when that happens.

Post Stem Cell Transplant: Day +9

Sorry but Tami is not up to Visitors Today

I have no update yet for how Tami is doing this morning but I do have some bad news about yesterday. Tami's abdominal pain has not subsided and her doctor is now concerned she may be displaying a symptom of Graft vs. Host Disease :(

The odd thing is, is that it is too early for GVHD to have developed. Normally the earliest symptoms would appear is at +20 days and more typically at +100 days.

She will have more tests done today but if it is determined that she has early onset GVHD there is an additional medicine that can be used to treat it. 

Edited this section to correct an error about what GVHD is: A patient's body rejecting the donor cells is an immune reaction when the patient's body recognizes the donor cells as bacteria and reject them.

What GVHD means is that the patient's donor cells recognize the patient's own cells as intruders and proceeds to attack and eradicate them. Please say a prayer for Tami that she is not already beginning to develop this condition. It could become a major setback in her recovery.

I should have an update on how Tami is doing this morning shortly.

Update 11:46 am: At this point it appears Tami's abdominal pain could be caused by three different issues:

1. The Mucositis could be inflaming her GI tract causing an infection. Remember the mucositis can effect any area from mouth to colon. Most often it manifests orally but it can effect the stomach and intestines as well.

2. The Graft vs. Host Disease

3. A fungal infection

There are treatments for all three conditions, they just need to figure out which one she has.

It sounds like Tami will undergo some type of Laparoscopic procedure today so that the doctors can actually see what the inside of her intestinal tract looks like and identify the source of her discomfort. I'll keep you posted when I learn more details.

She is also receiving a platelet transfusion today.

Post Stem Cell Transplant: Day +8

Sorry but Tami is not up to visitors at this time.

I did learn that Tami's x-ray's from yesterday looked fine. No problems to worry about. I'll post a morning update as soon as I receive one.

Update 10:40 am: Tami didn't have a good night last night, her stomach was hurting her a lot.

They took a ct scan but it didn't show any problems.

Her mouth is also hurting but she was able to have some oatmeal again this morning.

Despite all of this bad news her Dr says she is doing good.

Post Stem Cell Transplant: Day +7

Sorry but Tami is not up to visitors today

Unfortunately the side effects of the chemo and meds are beginning to take hold. Tami had a rough night last night with a lot of pain in her stomach. She is scheduled to have an x-ray today just to make sure everything is ok in her GI tract.

She is also suffering more pain from the mouth sores and was not able to eat as much this morning having only some oatmeal for breakfast.

I was told that Tami will most likely not be up for visitors for the next few weeks now :( A lot of the discomfort she is experiencing typically takes that long to subside.

But thank you to everyone who has been sending her messages via her website contact form. She is receiving them and they certainly brighten her days.

Update 10:16 am: Tami's doctor just came by and said despite her pain and discomfort she is doing very well. He said on a scale of 1-100 he would rate her overall condition and progress as a "90." He said she is going through the worst time right now so hopefully by next week she will be feeling better. 

Posted by Stacie (Tami's cousin)

Room with a View

This is the absolutely beautiful view from Tami's hospital room. I can't believe how pretty the scene is. I know Tami doesn't feel great right now but it must be so nice to look out the window and see such a pretty scene. I've only been in the hospital one time when I gave birth and I had a view of the parking lot!! This view is so much nicer.

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

Post Stem Cell Transplant: Day +6

Sorry but Tami is not up to visitors today

On the 4th of July Tami was able to watch a live fireworks show from her bed. She has an excellent view over the water. I'll ask Wendy to post a picture for you later today.

Unfortunately Tami will most likely begin to feel worse, or so her doctors have warned her. Since her transplant she has been receiving a drug in an effort to prevent her body from rejecting the new donor stem cells. This is a medicine that is being administered 4 times (on days +1, +3, +6 and +11) to prevent Graft vs. Host Disease. It will likely make her mouth sores worse as this is a known side effect but the benefits of preventing or minimizing any Graft vs. Host Disease far outweigh the temporary pain the mouth sores will cause. She will most likely receive a dose of Methotrixate today as it is day +6.

Update 1:03 pm: Tami's mouth has a few more sores today. Her stomach is bothering her a bit but this is caused by her medications. Most likely the number of medications Tami will be on will continue to rise in the coming days post transplant. I know at one point Roger was on around 30 medications after his transplant. Imagine all of the potential side effects and it's no surprise that Tami isn't feeling so great.

But right now she is having a pasta lunch :)

Posted by Stacie (Tami's cousin)