A Message from Tami Day +155

Hi Everyone,

I just wanted to share a belated Thanksgiving message with all of you from Tami:

Happy Belated Thanksgiving to all my family, friends and supporters,

These past months I have been overwhelmed with all of your love, support and messages in person, by email, on the phone, through the mail and through my blog and website. I am so thankful for each of you and I'm hoping the best for each of you in the coming year.

Love,
Tami

Stacie here, I am happy, no, make that thrilled to report that Tami is finally feeling better! Her back isn't perfect but continues to improve. Her body also continues to recover from the transplant. And big news, her hair is starting to grow back! At day +155 post transplant she's almost halfway to her half-year mark! That will be a reason to celebrate for sure. Maybe it'll catch on, celebrating half birthdays with a cupcake :)

Other patients we know are also reporting good news.

Matthew: Is recovering from his transplant and has moved out of the hospital and into an apartment near his hospital, very similar to how Tami did. Read his blog by CLICKING HERE

Zyreal: Is 7 years old and received his transplant and is recovering, still in the hospital. Read his online journal by CLICKING HERE

Jonathan Haupt will be receiving his mini haplo (a half matched) transplant from his sister Lynn on Dec. 8th. To learn more you can read his blog by CLICKING HERE

Our friend Roger, who also had MDS just like Tami, is continuing to recover from his transplant in Texas. He received it in March of this year but is having some complications now. It took Roger a year to receive his transplant because he had no insurance. Now he cannot work and is stressed about finances. If you would like to help Roger you can purchase a $5 "Cancer Sucks • I HAVE MDS" wristband or can make a donation to a fund I started for him here on Tami's website. Just CLICK HERE to place an order or make a donation.

On a sad note little Jasmina Anema is not doing well post transplant and it is feared that she has in fact relapsed and her Leukemia is returning. Recently the Make a Wish Foundation had arranged for her to meet and talk with President Obama as well as attend the annual pardoning of the White House turkey last week, but instead was rushed to the hospital due to a seizure. Her meeting with President Obama has been postponed for now. You can read more and watch a news video about Jasmina getting ready to leave for Washington D.C. by CLICKING HERE

There is now a follow up video to that story that you can view by CLICKING HERE

No News is Good News

Well the reason I haven't posted any updates lately is because my information source has run dry. That translates to that Tami has been doing well enough on her own that my mom is no longer going to help her each day. I hate calling because you just never know when she might be taking a nap so I will send Tami an email right now and see if she can send me back an update on how she's doing :)

Wow I woke up this morning...

And there was snow!

Came up for a short visit to see Tami. She looks great! Her back is still sore from her muscle strains, but regarding her transplant she's doing really well. In fact her magnesium level has suddenly risen so she will be able to reduce the amount of magnesium she has to infuse each day. This may mean she won't have to keep infusing the big bag of fluid that comes along with the high dose of liquid magnesium she had been receiving each day for the past few months. So that's really good news!

And guess who else I got to see....

Tami's Home - Day +111 Post Transplant Update

On the post transplant front Tami is doing really well. Her doctors are pleased with her progress and she is scheduled to go in for weekly testing for the next 6 weeks to monitor her progress. It doesn't seem that long ago that she was receiving daily testing to monitor her blood cell, potassium, sugar and other levels.

Her back however is still problematic. The long drive home from Seattle didn't make matters better, in fact her back was more painful upon her return home. But the pain is finally beginning to subside with the help of meds and massages. Her doctor in Seattle had explained that her lack of muscle tone due to the months of being so sedentary would increase her recovery time.

Today is Tami's Discharge Day! 100+ Days Post Transplant!

Well the day has finally come. Tami is being discharged as a patient from the Seattle Cancer Care Alliance hospital. I haven't spoken to her but I'd imagine there is both happiness and some anxiety in a moment like this.

The doctors, nurses and her PA at the hospital have given her phenomenal care and have brought her so far in the last 4 months since her arrival there. To leave the security of one of the top transplant hospitals in the world probably causes most patients to feel a bit anxious.

So long Seattle!

When she returns home she will still be in good hands and will hopefully continue her post transplant recovery with few complications. The GVHD and infections she's been dealing with will take time to eradicate. By time I'm not talking days or weeks but possibly months and even years. It's all part of the process and I'm certain that Tami will face all of it head on as she has so far.

Her courage at going through the treatments and transplant is pretty overwhelming to me. I can only hope that if something similar ever happens to me I can be as brave as she has been.

I know that once home she will take great comfort in being with her family again and also know that she will still need to be careful and not over do things. Though she will be discharged today she won't leave Seattle until several days later. But this is a reason to celebrate so I wanted to share it with all of you here on her blog!

Tami's Discharge Day from SCCA has been Scheduled!

This is great news. It's been confirmed. Barring any complications Tami will be released from the Seattle Cancer Care Alliance Transplant hospital on October 8th to return home! YAY! She is doing well enough to go home!

Thanks to everyone for all of your prayers and good thoughts. We know they have helped Tami through her ordeal and I know you have all helped to lift the spirits of our entire family. I will keep you posted as I learn more about her move home.

Baseball and Friends - Post Transplant Day +91

So Tami is doing pretty well again. Her friend Liz treated her and my mom to a Mariners' baseball game recently. They had a great time but I'm not sure if the team won or lost. I do know they played the Yankees but that's all I know.

Tami has still been dealing with her skin peeling from the GVHD but it's under control. Her larger problem has been unrelated to her transplant. She somehow managed to pull her back and has been dealing with muscle pain. Hopefully that will subside soon. Especially in time for her move HOME! Within the next 2 weeks she may be heading back home to her kids, family and friends who have been missing her since she left in early June. I am seriously praying for no complications between now and then so that she can get back as soon as possible. I will keep you posted as I learn more.

And more friends, Limin and Jerry, came over to Seattle to visit Tami. Tami has been able to go out to have lunch and fun with her friends who live in Seattle. Things are slowly getting back to normal.

And this is just some of the art Tami has hanging at her apartment in Seattle. Courtesy of her kids, nieces and nephew. So cute right? Just thought it would be fun to share them with you.

Out of the hospital and feeling better. Day +77

Tami stopped by her company's Seattle office the other day to get her laptop worked on and had a visit with her friends (colleagues) Liz, Mike and Stephanie. It's so great to see her out of the hospital again and getting some fresh air.

All in all there isn't a whole lot of news to report on how Tami is feeling.

Tami's GVHD is still making her skin flakey. Her doctors are already tapering back on her Prednisone so hopefully she won't need it too much longer.

Thankfully her viral tract infection is subsiding and she is no longer in any discomfort from it.

She is doing so well again that she only goes for a blood draw once a week.

On top of that she and my mom have been going shopping. I think that may be her favorite pastime while they are in Seattle.

And here are some photos of the gorgeous art work that fills the Seattle Cancer Care Alliance Hospital. When I visited Tami last month the art was very much a big surprise to me. I felt like I was in a museum instead of a hospital because there was so much of it and it was all so striking.

I'm glad the hospital is able to make the floors so aesthetically pleasing. It certainly helps to create a feeling of peacefulness for the patients to enjoy.

The piece above was a wall piece of glass art by artist Laurie Burns.

And close ups of the tiles of glass. It was really gorgeous.

I loved this metal bench by Steve Jensen titled "Swirls."

This piece had no tag so I don't know who the artist is or the title of the piece.



And I loved this koi painting titled "Balance" by artist Jeanne Keckler.

But this was my favorite piece. The tag on the wall said:

Carved from a naturally fallen cedar tree from Duvall, Washington, the Healing Tree has interpreted images from many cultures carved into it, including the breast cancer ribbon, a Japanese Reiki symbol, a heart as a symbol of love, healing hands that embrace a figure 8 as an infinite healing symbol, a Hopi Indian healing symbol of a badger claw, a Buddhist triskelion spiral, and an ancient Chiron healing symbol of a willow. All of these icons have been combined and interwoven, creating an abstract carving of love and hope.

The Healing Tree was carved by artist Steve Jensen from a naturally fallen cedar.

Artisan Pizza for Dinner? Day +72

As of Monday Tami is back to being an outpatient and though she is still dealing with the lingering effects of both the skin GVHD and viral infection she is doing better. The GVHD is responding to treatment and the rash is healing. That means at the moment all of her skin is peeling. Not fun. And the other viral infection, while not gone, is also under control.

The Hickman Catheter that was implanted in her chest is now removed, hopefully for good. YAY! And now she has a pick in her arm to help with her infusions.

Here's something fun, when I was talking to my mom yesterday she said tonight she and Tami will probably have pizza for dinner. Oooh I'm jealous. It's not just any pizza...

While I was in Seattle I hoofed it on over to Zaw one night to pick up an "Artisan Pizza in the Raw" to bring home and bake for dinner. This is such a cool company. It's the most eco-friendly and gourmet pizza place I've ever seen. Among other features they say whenever possible they use seasonal, organic, unique, and local ingredients. Their delivery service is by bicycle and their shop has a "green" wall of plants, planted horizontally, that grow vertically to help create oxygen.

Here is the "green" wall.

And a close up. I don't understand how they get the plants to stay in place but somehow they do. The plants go in with their roots towards the wall but then the plants make a 90 degree turn and grow vertically. Very cool.

And this is the first pizza place I've ever been to that pairs their pies with premium beers and wines. LOL but their ingredients are so gourmet it only makes sense that their drinks would be less then typical. For instance here are a couple of pairings from their menu:

Shroom Fest
Gently sautéed portabella, crimini, and button mushrooms from Ostrom’s in Olympia meet roasted red onion, fresh thyme, garlic and shroom-enhancers of asiago and mozzarella.

Pairs with: Chardonnay, Porter

And this one...

Savory Savary
A combination of sliced Isernio’s hot Italian sausage,
maple-syrup-caramelized red onion and fresh organic sage. Served with a blend of asiago, parmesan and mozzarella.

Pairs with: Reisling, Premium Lager

This was our pizza that evening.

If you have the chance you should order one or two. They only take 10 minutes to bake. I wish we had a Zaw down here in California. Hope Tami and my mom have a great dinner tonight!

GVHD is Under Control Day +65

Tami is not up for visitors at this time.

Some good news. Tami's skin GVHD is responding to treatment. Despite the fact it messes up her blood sugar which then requires insulin to correct, her doctors resumed using Prednisone to treat her latest flare up. Her rash has already begun to subside so that's great news.

Unfortunately at this time Tami's immune system is once again even more compromised due to the Prednisone. It helps to reduce the activity of the donor T-cells which basically means it semi-shuts down her immune system becuase the T-cells are attacking Tami's own tissue. This time it's her skin. Last time it was her intestines.

You may have noticed that for the first time since June 22nd Tami's illustration does not include her Hickman Catheter. Her doctors determined that it may have been an infection in her Hickman Catheter that was causing her other infection so they removed it yesterday and will replace it with a new catheter in 48 hours. I hope they're right. It would be great if she could start next week free of infection and clear skin.

On the good news front I am excited for the opportunity I've been given to attend an event next week to mingle during a networking session and help to spread the word about the need for people of Hispanic and Latino descent to join the National Marrow Donor Program. I will be working with Ivonne from the AADP.org. Even though the AADP started out as the Asian American Donor Program they have added a Hispanic and Latino Recruitment Coordinator to their staff as they have evolved to encompass more ethnicities then just Asians. I'll post details about the event after it's taken place.

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!

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 +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.