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)