Post Stem Cell Transplant: Day +5

Sorry but Tami is not up to visitors today

Today Tami will need a platelet transfusion. If you go back through the past 5 days you may have noticed that I am including the blue tube on her day-by-day illustrations to denote that she is receiving platelets that day and the red tube if she received a blood transfusion. 

At the moment her nausea has finally subsided and she ate a Breakfast Burrito this morning. Her doctors are so pleased with the fact that she is still able to eat a wide range of different types of foods despite the chemo.

The mucositis I mentioned yesterday worsened only slightly since yesterday so again, her doctors are very pleased with Tami's progress.

Posted by Stacie (Tami's cousin)

Graham is Gone and Michelle's Prognosis: 4-6 Weeks

I share the news of Graham and Michelle with you not to make you sad, but to make you mad. Mad that neither were ever able to find a marrow match. Mad because Leukemia is a treatable disease and yet people die from it each day simply because there aren't enough people who have joined the National Marrow Registry, not just here in the U.S. but in Asia and Worldwide. Please don't forget people like Graham and Michelle... People who have suffered through so much illness, pain and recovery only to finally be told that there is no hope for them.

Graham Barnell and His Family May 2009

For the second time this week I spent the wee hours of the morning in tears. Several nights ago I learned that Graham Barnell, husband, father and Leukemia patient, had passed away. I met Graham through his Facebook Group after he first joined Tami's FB Group. I was one of many of his online friends who received a message at 2:49 a.m. on July 2nd breaking the sad news that he had "Passed away peacefully, surrounded by family and friends."

And early this morning I read Michelle Maykin's blog only to learn that she is almost out of time. 

Last Monday she posted a post titled: How do you know when to stop fighting? Due to Tami's transplant taking place on Tuesday I hadn't made the time to check on Michelle the way I normally do so I was stunned. I literally felt my heart sink as my body began to tremble right before the tears came as I read that even with one medicine that is safe for her to take to slow her cancer, last week her doctor estimated that she has 4-6 weeks left.

Except for her loss of hair, she doesn't even look sick.

Western medicine has nothing left to offer Michelle when it comes to a cure. Her Leukemia has proven to be chemo resistant and no marrow match has been located. There are no treatments left whose benefits and possible effectiveness outweigh the terrible and possibly fatal side effects they may create. Both she and her husband Van were crushed. But despite being completely aware of the odds, Michelle is still not giving up. She is turning to Eastern remedies: herbal medicine, practicing Qi/Chi Gong, and sticking to certain dietary restrictions as her "last fight."

If Eastern medicine can result in major improvement or another remission and a marrow match is found NOW Michelle could still have a chance at not 4 to 6 weeks of life but 4 to 6 DECADES! She is only 27 years old :(

I love this picture of Michelle and Marshawn

Both Michelle and Graham participated in a clinical trial receiving double cord blood transplants at the Fred Hutchinson Cancer Research Center using the stem cells found in infant's umbilical cords. Cords used to be disposed of after a delivery but now we know that there are many reasons to save this stem cell rich blood source. Michelle's remission was about 5 months before she relapsed this spring. Graham suffered through and survived the most severe type of Graft vs. Host Disease and was then stricken with a terrible and persistent fungal infection only to succumb to a chest infection.

If either had found a 10/10 adult stem cell match their odds would have been better. A cord blood transplant is not an ideal match. But when no adult match has been found and the patient is out of time, it buys them some time. Imagine if during Michelle's remission a match had been located and she was able to receive a transplant by now.

Just last month Michelle's friends threw her a cancer "intervention" inspired by a particular episode of the TV Show How I Met Your Mother.

I post this because even though Tami received her 10/10 marrow match and transplant I feel the need to remind everyone that most patients do not. Most patients lose their battle when their 27 or 39 or 44. Many leave behind young children and husbands and wives, grieving parents and heart broken friends.

Statistically the odds are that only 30% of patients in need will find a marrow match and receive a life saving transplant. That means 70% of people won't find one and will die.

But that's something we can all help to change. Please continue to spread the word about all you've seen Tami go through and all you've learned here on her blog and website. Please tell people about Tami's website so they can learn more too. Please don't step back now that Tami's need has been met. We really need everyone to help us spread the word so that others who still have some time left, others like Michelle who need and deserve a miracle, can be saved.

If you want to send Michelle a message of support you can do so on her BLOG by leaving a comment on one of her posts.

Posted by Stacie (Tami's cousin)

Post Stem Cell Transplant: Day +4

Yesterday Tami didn't feel well but still ate breakfast lunch and dinner. Which is really good news because eating will help her to recover faster. She was also able to get some much needed rest.

I will be receiving a more detailed update later this morning and will update this post at that time.

Update 10:46 am: Today Tami showed the first signs of Mucositis. This is the formal name of the mouth sores I have mentioned a few times in past posts. Most marrow transplant patients develop the condition to a lesser or greater degree. We are of course hoping Tami's case will be a mild one. 

Mucositis is caused by damage to the cells that create mucous throughout the entire GI tract from mouth to anus. Though it can effect any part of the GI tract most transplant patients experience oral/mouth mucositis. Basically the cells that create mucous to keep the mouth moist are damaged by the chemo causing the mouth to become susceptible to infections. This causes the mouth to develop sores that can range from being mild to completely debilitating with large areas of the mouth developing painful ulcerations like canker sores. In worst cases patients cannot eat due to the pain and need to be given nutrients by tube feeding to keep up their strength during recovery.

Tami is at the beginning stage of showing signs of Mucositis but her doctors are pleased with her overall progress. They said most patients develop the condition earlier then Tami has and they have remarked since her arrival that her body is coming through everything with extremely good responses to the medicines and procedures.

I also learned that when her Doctor said she received a "Good batch" of stem cells he meant the volume of stem cells was unusually high. In layman's terms patients can receive as few as 2 million kg of stem cells for their transplant but Tami's donor sent her 11 million kg. So she received a very high dose of stem cells which improves her odds of a successful outcome. 

We can never thank her anonymous donor enough. For now they cannot meet but a year after the transplant date, if both would like to know who the other person is, the donor program will facilitate that happening. So for now we'll keep thanking her donor from the bottom of our hearts here on her website and blog on the off chance he is reading them. 

Posted by Stacie (Tami's cousin)

Thank You for Your Prayers

I don't know about you but one of the first things I do when I learn someone is in trouble or sad or needs help is say a prayer for them. I pray for strangers I learn about on tv, online, or through friends. I pray for loved ones and I even pray for animals and pets. We have recently learned about all the people praying for Tami and a lot of us feel it is really helping Tami. We can never find a way to thank you enough for all the prayers.

We have received so many messages online praying for Tami and it means so much to her family. We also learned that a very special couple recently spoke Tami's name at their Synagogue! Their entire congregation prayed for her that evening.

Another family friend that has been vacationing in Europe actually prayed for Tami at the Vatican! I just know it has helped Tami so much to have so many kind people caring for her.

Others have included Tami's name, among other names, to their prayer circles. A prayer circle can be a group of individuals either in person actually holding hands or a group of friends and acquaintances or an online community that prays for its members and anyone else the members mentions as needing them.

We ask that you continue to offer up your prayers for Tami. She will be needing them for awhile now. So please by all means say those prayers!!!

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

Post Stem Cell Transplant: Day +3

Is Tami up for a visit?

Sorry, due to exhaustion not at this time.

Today Tami had Rice Krispies and yogurt for breakfast. She is still very tired and has been experience indigestion off and on. She is really tired so it's good that today should be an easier day for her with no transfusions or major procedures. Yesterday her blood and platelet transfusions began at 8:00 am and didn't end until 8:00 pm.

And some surprising news. Early on we were told that Tami wouldn't be able to see her kids for weeks after her transplant due to her risk of infections. This would be such an emotional hardship for any family. But as it turns out that isn't the current policy at her hospital and as long as they take proper precautions, her kids can visit her during her recovery. Last night they arrived in Seattle for a short visit! We know that seeing her kids will raise Tami's spirits immeasurably so we're glad that they are having an opportunity to see each other.

Regarding Visits: Today I added a new feature to Tami's daily updates to let everyone know if she is up to visitors day by day. Unfortunately due to the increasing exhaustion and side effects she's been experiencing from the chemo and medications she no longer has the energy for visitors. This may last for several weeks :( To better understand please read the post preceding this one about Side Effects.

But if she has a good day and wants some company we'll be posting that for sure and for those of you who have contacted me directly asking about visits, I'll send you an email to let you know that this has changed so that if you are able to fit it into your schedule you may be able to swing by and chat with her :)

Update 9:24 pm: Unfortunately Tami began suffering from cramping today on top of the nausea and indigestion she was already experiencing. This is not a big surprise but an unfortunate reality. Hopefully she will feel better tomorrow.

Posted by Stacie (Tami's cousin)

Side Effects of Tami's Chemo and Stem Cell Transplant

So here is what Tami, and anyone who receives a marrow or stem cell transplant faces during recovery:

Temporary Side Effects:
These are often caused by the pre-transplant chemo and other medications given during the transplant and post-transplant process. Tami is currently receiving over a dozen types of medicine. At one point our friend Roger was receiving over 30 types of medication so just imagine the potential side effects that would cause. From mild to severe/serious the intensity varies from patient to patient. A patient can also suffer from more then one side effect at a time. Doctors will attempt to minimize any discomfort or pain with additional medicines and treatments.

• fatigue
• nausea and vomiting
• diarrhea
• low blood count
• mouth sores
• rash
• sore throat
• loss of hair
• changes in skin pigmentation

Possible permanent side effects include:

• Cataracts
• Infertility

Graft vs. Host
One of the most serious complications post transplant for all patients is a condition called Graft vs. Host Disease (GVHD) and usually appears somewhere around +100 days post transplant. What this means is that the patient's new donor stem cells sees the patient's cells as foreign bodies and proceeds to attack and eradicate them.

I've read online that the closer the match the less likely this condition will occur. Since Tami received a 10/10 match this means she is less likely to suffer from Graft vs. Host then if she had received a 9/10 or 8/10 match.

The effects of GVHD can be mild to fatal.

The areas of the body most commonly affected are:

• The Skin
• Liver
• GI Tract
• Mucous Membranes

Medicine that helps suppress the immune system post transplant gives the new marrow a chance to take over and helps to prevent Graft vs. Host. Eventually this medicine is tapered off. When GVHD does occur these medicines may be tapered off sooner to give the donor cells an opportunity to flourish and fight back.

Posted by Stacie (Tami's cousin)

Post Stem Cell Transplant: Day +2

I will continue to update this post throughout the day as I receive news as to how Tami is feeling. I'll also add a wrap up at the end of each day after I check in with Seattle each evening.

Update 12:00 am: Due to the chemo doing such a good job destroying Tami's original marrow she will need a red blood transfusion today. The lack of red blood cells is almost certainly adding to the exhaustion she has been experiencing since yesterday. Without healthy red blood cells her body and major organs can't receive the oxygen they need to function properly.

Post transplant it's normal for a patient to need 1 red blood transfusion per week and up to 3 platelet transfusions. 

Each day Tami will have her blood drawn and tested. The complete blood count (CBC) will show if her new donor stem cells begin to produce new blood. The first signs of engraftment can appear in as few as 10 days but the average amount of time is 20 days. 

Update 10:45 am: Turns out Tami is going to need both a platelet and red blood transfusion today. She is feeling very nauseated this morning. Again, the chemo is most likely the cause. At this point I'm relieved that all she is suffering from is feeling "yucky" discomfort and not pain. That is something to be thankful for.

Tami did have a light breakfast this morning so that's good too.

Update 10:55 pm: Overall Tami had a pretty rough day today. The nausea did not let up and now she is also sufferring from an upset stomach. But her doctors are pleased with her progress. They've been pleased since her arrival. Tami's been doing exceptionally well through this entire process since arriving in Seattle. They are predicting her engrafting should take place in another 10-14 days.

Posted by Stacie (Tami's cousin)

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

Roger Contreras hosts his first blood donor drive in Houston, Texas

We have told you in previous blog posts about Roger Contreras. As you will remember, Roger, like Tami, has Myelodysplastic Syndrome. His sister was a perfect match and was able to be a donor for Roger.

This is Roger's latest blog post.

"I have had a catheter in my chest for over four months, it has just been removed and I feel free and liberated. To celebrate my independence I will be hosting a blood drive:

Sunday July 5, 2009
The event will begin at 1 p.m.
Dream Rooms Furniture
8622 Eastex Freeway
Houston,TX 77093

59 North & Loop 610

Jesse Valdez is being so kind as to let us use his location for this much needed event. All donors will receive a custom designed shirt and 10% off any furniture purchase. For more details and information on the fine furniture offer please contact (281) 541-3435.

I am in need of donors so please call me at (786) 281-8316. This is the first time I am hosting a blood drive and I need your help to make it a huge success."

We could not be more happy for Roger!! Gulf Coast Regional Blood Center will be hosting the blood drive.

The need for donor blood is constant and great. The American Red Cross has posted donor guidelines on their website that will help you determine if you are eligible to donate. They also have so many reasons why you should give blood. I feel the most important reason it to help a fellow human being that needs you.

If you live in the Houston, Texas area it would be so awesome if you could come out and support Roger. If you do not live in the Houston area there will be other donor centers in your area. The Red Cross has a simple and easy way to find a center near you.

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

Post Stem Cell Transplant: Day +1

I will continue to update this post throughout the day as I receive news as to how Tami is feeling. I'll also add a wrap up at the end of each day after I check in with Seattle each evening.

Update at 12:05 pm: Tami is doing ok, she is feeling the side effects from the chemo and is not feeling very well. She is very tired and trying to get some much needed rest.

On the up side she was able to eat some breakfast and is resting now.

Update 10:13 pm: Good news. Tami's blood counts have gone to 0 which means the chemo did it's job. And more good news, the Doctor said that she got a very good dose of stem cells. I'm not quite sure how they qualify what makes a "good" dose but I'll try to find out for you tomorrow.

It was a pretty quiet day and Tami felt exhausted and nauseous at times. Hopefully she will feel better tomorrow.

Thank you so much for all of the messages you all have been sending to her via her website. She isn't up to reading them every day but rest assured that when she's up to it she is able to go online to read them.

Posted by Stacie (Tami's cousin)