How to Help without Giving Money

I have been blessed by very generous people, who continue to help me in my efforts to fight cancer.  But what if money is tight right now...  What can you do to help?  I thought the video in the link below gave a great idea of something we could do to help without costing a lot of money.  The girl in the video (a local Seattle girl) was saved by having a second transplant from an unrelated donor.  I can't help but think of what might have happened if Tyler had been able to find a match in the Bone Marrow registry.  Would he still be here?  Only 3 out of 10 patients currently find a match in the registry.  The best way to improve those odds is to get everyone we know to sign up and be willing to save somebody's life!

http://today.msnbc.msn.com/id/34107503/ns/today-today_health/t/woman-meets-stranger-who-saved-her-life/#.TytUN8gzCSo

Staying south

Unfortnuately, Tyler experienced some complications after his bone marrow aspiration yesterday and had to be admitted to the hospital here in Houston. As he was leaving the BMA, he had severe shivers and (although he was fine right at the end of the procedure) had a temperature that spiked up to 103 in a very short time. We spent the afternoon in the ER and then transferred to a bed on the 16th floor. The fever broke overnight, most likely in response to the antibiotics that they started him on, but we will probably be in Houston for at least a few extra days.


We are both upset about being stuck in Houston for Christmas, but we had planned on a very quiet Christmas anyways so this just makes sure that we abide by that.

His platelets were back down to 1 today, so they are giving him another transfusion now. Hopefully yesterdays platelet's were just eaten up by the fever yesterday and he will still be able to get by with transfusions every other day for a while longer.

Best wishes for a happy and healthy holiday to you and yours!

Cruise Control

We continue to be on Cruise Control here at UWMC, as Tyler's mouth continues to heal bit by bit.  I've still not heard that he has a white blood cell count yet, but that would be because I have had to be at work during the doctor's rounds to see patients.  The doctor did say that the mouth improvement is a good sign that counts will soon recover.

Tyler is starting to lose his hair again from the chemo treatments last week.  We kind of expected it earlier, but will have to dig out his hats again to keep his head warm.  It actually boggles my mind that 5 days of chemo about a week ago would be responsible for his hair loss today.  It seems like all of the side effects should happen at the same time as the induction therapy, but that certainly isn't the case.

He hasn't had any more breathing scares since Wednesday, so we are starting to relax a little bit more each day.  He has been dozing throughout the last couple of days, when not interrupted for a bone marrow or lumbar puncture.  His rash has faded a little bit more, but still causes him some discomfort.  He's not really up for company, so we haven't reached out too much.  If we could just get his sides/muscles to heal up, he could get out of this room and walk around the floor a little bit.

As for me, I am excited that we finally made it to the weekend so that I can spend a little extra time with my handsome husband.  Although... I think I thoroughly annoyed him this evening by asking him endless questions.  I miss talking to him, so I try to have "conversations" where I ask him yes/no questions.  It really isn't the same thing, but talking still hurts for Tyler so we definitely can't have real interactions like we normally would.  Plus, he feels like he is in a drug fog much of the time.  I think he has big plans for the days when they finally wean him off all of this junk again!

Joining Two of our Passions

From the Sounders Blog:

The Sounders FC invites fans to take part in the Sounders FC Bone Marrow Drive. The Sounders FC have teamed up with defender Tyrone Marshall in an effort to support Marcia Williams’ battle with cancer. Marshall and some of his teammates will host the Sounders FC Bone Marrow Drive at Qwest Field on Aug. 18 from 4-7 p.m.

Marcia is the wife of Real Salt Lake’s Andy Williams, a close friend of Tyrone.

“I’ve known Marcia, Andy’s wife, since Miami in 2000/2001, so we have gone back awhile. It’s a tough feeling to know someone that close who is struggling with a life-threatening illness,” said Marshall.

Fans can help by attending the drive on August 18th and joining the National Bone Marrow Registry, a very quick and easy process.

“A lot of people think they are going to be stuck by a needle, however it is just a little swab in your mouth and it is easy. In addition to filling out some paperwork, the cheek swab won’t take more than two or three minutes. “

Patients are more likely to find a compatible donor within their own racial and ethnic background, which is why Puget Sound Blood Center is requesting a diverse group of donors. Currently the national registry for bone marrow is 75% Caucasian.

For information on Marcia’s fight visit soccerunitesutah.com and for information on joining the National Bone Marrow Registry visit www.psbc.org.

Parking will be complimentary in the north parking lot.

Marrowthon Success

From the Be the Match website:

Thanks to the amazing response of people like you, the Be The Match® Marrowthon, June 8 – 22, 2009, was a success. With the help of our supporters, we reached many thousands of people with the message about the need for bone marrow donors and financial contributions to make life-saving transplants possible.

Tens of thousands of people joined the marrow registry. And we’ve raised funds to add many more.

Thanks to all who joined, contributed financially, created their own marrowthons, helped spread the word and even ran on treadmills to raise funds. You are the ones who give patients hope.

The Be The Match Marrowthon is over, but it's not too late to get involved to save lives.

Even if you missed the deadline to register for free, you can still make a difference by volunteering as a donor today. Visit www.marrow.org for more information.

Save a Life --- Join the Bone Marrow Registry

Thousands of patients hope for a bone marrow donor who can make their life-saving transplant possible, just like Tyler has experienced. They depend on people like you and me to offer our this lifesaving gift. You have the power to save a life. Take the first step today by joining yourself!

When you join the Be The Match Registry, you become part of every patient's search for a bone marrow donor. You could be the one to save a life.

And now, during the Be The Match Marrowthon, you can join online for free June 8 - 22, while funding remains. Our Marrowthon goal is to add 46,000 new members to the registry. Be one of them!

When you join, you can also choose to make a financial contribution. It costs about $100 to add a donor to the registry. Your tax-deductible gift in any amount creates the opportunity for more donors to join.

It's easy to join the the Be The Match Registry at: http://www.marrow.org/JOIN/Join_Now_Special/Marrowthon09/join_now_mt09.html

1. Confirm you meet basic registry guidelines.
2. Complete the online form and order your registration kit. This step will take about 30 minutes.

The cost to add you to the registry has been covered, but funding is limited. To join for free, you must complete the online registration step before June 22 AND before funding limits are met.

3. Follow the instructions in your kit to collect a swab of cheek cells and return the kit.

Day 84 - Bone Marrow

Day 84 marks the last SCCA bone marrow aspiration for Tyler's protocol, so we were excited to tick off yet another item from our list of things to do before we leave them. Tyler always gets sedation with his bone marrow draws, so he had to fast for 8 hours before the procedure. As he is starting to feel hunger again, this was actually the most challenging part of the procedure.

For today's procedure, they were actually taking a bone marrow biopsy, a bone marrow aspiration, and a skin biopsy. I've posted photos below to help paint the pictures.

As shown in the photo below, they lay Tyler on his side for this procedure to allow them to access the pelvic bone. As far as we can tell, bone marrow aspirates are done in either the breast bone (center of your chest) or the pelvic bone. SCCA seems to prefer the pelvic bone for their procedures.

They start the sedation and get Tyler feeling kind of sleepy. He's technically awake, but acts as if he is asleep during the procedure. In fact, I've heard him snoring during more than one procedure. Yet, if you call him by name, he will wake up long enough to respond to you.

After numbing his skin with a local anesthetic, they insert a needle through the skin and into his bone. The nurse in the photo below is actually twisting a handle to insert the needle.


When they think they have a good spot, they draw a small sample out. When Tyler did this procedure without the sedation, this was the part that hurt the most. And he actually remembered the vacuum feeling for days afterward.

The sample in an aspirate looks like blood, which I never would have expected based on my understanding of marrow before this procedure. The tech swirls the sample around in a petri dish to see if it is a good marrow sample or mostly blood. If you look closely at the photo below, you can see a few granules in the petri dish from Tyler's 3rd sample. The presence of these granules indicate that they have drawn a good sample. Ideally, they would like to have more than are shown in the photo below, but decided that this sample was good enough.


Next, they used a bigger needle to draw out the bone marrow biopsy. They take a narrow core of spongy part of the marrow to be able to look at it as well. We'd not had a biopsy until he came to the SCCA family, but it isn't so very different in the patient portion of the procedure.



For the Day 84 procedure, they also took a small slice of Tyler's skin to check for any signs of GVHD under a microscope. This was a new procedure for us too, but as they took the sample from the same location while he was still under anesthetic, it didn't cause us any difficulty at all.

After the 20-30 minute procedure, Tyler had to stay laying down while he recovers from the poke (laying down applies pressure to the site) and the anesthesia began to wear off. During this time, he was finally allowed to eat and drink again.

My apologies if the photos were too graphic for anyone, but I thought that learning more about this procedure that I have been seeing for the last two years was absolutely fascinating. Some of you may be interested to see more about this as well.

Thanks for the great responses to Tyler's last post! It's fun to "hear" his voice again, isn't it?

Mandy

Day 34 - The Envelope Please...

We finally got the bone marrow results today when talking to our nurse. But... before I get to that....

Tyler had an ultrasound and his regular labs at SCCA today. They said his liver and other organs looked the same in the ultrasound as the last time they looked at it, so I guess he's doing okay as far as the GVHD goes. I'm not sure exactly why this test was scheduled, but assume it might have something to do with some out of the ordinary liver function tests. They are fiddling with Tyler's medication a bit to get him to be at just the right level for optimal healing.

His labs turned out pretty well today too.

WBC: 2.96 (normal 4.3-10.0)
HCT: 29% (normal 38-50)
PLT: 72 (normal 150-400)

His neutrophil count wasn't in yet when the left the clinic this morning, so I guess we'll have to wait for that. But the other numbers all seem to be holding pretty steady and that's a good sign.

And now... May I have the envelope please...?

In reviewing the bone marrow aspiration from last Wednesday, they determined that Tyler showed NO signs of disease reoccurence. He showed good signs of engraftment and the cells that they collected were 100% from the donor (Thank you, Scott!!). The nurse said that Tyler looks to be doing great for being Day 34.

You can catch us doing the Happy Dance all night long as we celebrate some great news. Thank you so much for the prayers and well-wishes that got us this far. We're so very thankful to have something go right in our battle!

Day 29 - Quick Note

Today was the 1st post transplant bone marrow aspiration and it went really well. I actually took several photos today and hope to share those. However, I forgot my real camera and only took the pictures on my camera. But they were really interesting and show a little bit of what happens and the staff there let me ask a bunch of questions about the process. Even though I've seen several aspirations, I learned a bunch.

Now comes the hard part as we wait for results. We are nervous that there might be some leukemia out there swimming around, but I really hope not!

Lab Results today were:

WBC: 2.77 (normal is 4.3-10)
HCT: 30% (normal is 38-50)
ANC: 1.96 (normal is 1.8-7.0)
PLT: 69 (normal is 150-400)

Day 26 - A Day of Rest

Tyler and I had a pretty low key weekend, which was much needed after the craziness of the last week. Tyler's aunt, Libby, came up for a few hours on Saturday to get a putting lesson from Tyler. It sounds like she picked up a few tips, so I think they are both hoping to get out golfing again soon.

My parents also stopped by (and brought homemade Won Ton soup from my sister) to say "hi" on Saturday evening. My mom's family is planning a week long getaway in August, so we had some fun talking about the golf that the guys planned while in Chelan. I think my father is secretly delighted that Tyler loves to play so much golf. I'm hoping that they can both get over to the golfing place that Tyler found on 128th soon.

I have another busy week at work, so I'll be gone from Tyler for much of the time. But the good news is that my software conversion is going REALLY well and I haven't forgotten everything I'd learned about the software. ;)

As for the week ahead, Tyler has an important bone marrow aspiration and biopsy coming up this week. This test (scheduled for Wednesday) will help measure the success of the transplant. Tyler asked the doctors about when he can say that he is "in remission" and they told him that his bone marrow test would be an important part of that. The goal is for them to see absolutely NO signs of leukemia in his marrow. We likely won't know the results right away, but will be anxiously awaiting the news anyways.

They actually had Tyler start back on his Tasigna last week to make sure that any remaining leukemia in his body will be controlled until the new immune system is fully functional (for about the first year). After that year passes, I'm hopeful that Tyler might get to move off the Tasigna again and have a more normal (translation: less pill intensive) life!

Other than that, Tyler also has his regular blood draws Monday and Thursday and clinic visits on Thursday. Scott (Tyler's dad) is coming to take Tyler to his Monday appointments, so those two will probably go crazy talking sports all day long.

Boiling It Down

The marrow from Scott was taken to SCCA, where a specialized nurse ran it through the Apheresis machine to separate out the stem cells from the rest of the stuff they collected. You can see the 2.5 liters that they collected from Scott hanging in the big bags on the right side. There is actually a second bag hanging behind the one that you see.

Of the bags hanging up on top, the one on the right is the stem cells that had been filtered out when we went to see her. The one in the center is probably the "other stuff" that was being filtered out. Scott had the marrow harvested from his pelvic bone, which is a surgical procedure (with lots of sedation). Donors for other transplants that have the stem cells collected from the donor's peripheral blood would actually be hooked up to this machine for the harvesting. It's more like donating blood at your local blood bank.

Still Glowing

My darling husband was measured this morning, but he must have still been glowing with radioactivity. His radiation level was down to 12.1 mR/hr, so we are hopeful that he might get to come home tomorrow.

The nuclear medicine specialist tells us that we can't do anything at all to hurry along the process, but I keep hoping that something will work. Tyler and I are both looking forward to spending more time together. We've only spent a few hours per day in each other's company, and we are separated by most of the room to protect me from the radiation.

Tyler's dad (his marrow donor) had an appointment today to bank some of his blood in preparation for the procedures next week.

We hope that Tyler is able to spend tomorrow night at home, as he begins his conditioning chemo on Wednesday. He'll have 5 days of chemo, followed by Total Body Irradiation next Monday, and a transplant next Tuesday. Wow! After months of delays and complications, time is now speeding towards this transplant. We are certainly ready to begin the recovery phase!

Transplant -8 days and counting...

Conditioning Treatments

This week's schedule is an important one for us. Tyler has some standard appointments early in the week (we'll see our nurse and nutritionist and get some blood drawn), but the big stuff starts on Thursday. That is the day that he becomes the Bubble Boy. He's scheduled to receive his therapeutic dose of the radiolabeled antibody at UW, as he begins his isolation.

The therapeutic dose is the amount of medicine needed to treat the disease, so this is the first (and most important) step of Tyler's transplant conditioning. The goal of the conditioning is to prepare Tyler's body to accept the new marrow. This particular treatment injects Tyler with radioactive antibodies that seek out the cancerous cells and kill them off from the inside. As we saw in the Gamma scans, the radiation from the test dose moved into Tyler's marrow, his spleen, and his liver. These are all blood heavy areas of the body, so you can imagine how the full dose will be attacking the cancerous cells in his blood to kill the disease.

Tyler will be measured for the amount of radiation that he is emitting and we will be told how close we can get to him. He will be emitting gamma rays, so there is danger if we get to close to him. For that reason, the nursing staff will limit their visits to him.

In addition, anything that Tyler touches will become radioactive. So, anything that goes into the room with him will stay there with him for the entire time. Any food that he orders and doesn't eat will stay there with him for the entire time. Ideally, we'll throw away most of what goes into the room with him, but for the stuff that we want back... The UW will monitor it for radioactivity and return it to us at a later date, usually about 90 days later.

We plan to have Tyler take a computer in, so that he can read e-mails if he is feeling well enough. Other than that, he'll be spending a quiet weekend at UWMC. Our hope is that the side effects will be kept as small as possible, although we are worried about a recurrence of the mucositis.

Day -16 until transplant

The Start of it All

We finally tracked down the LP results this morning and are THRILLED to report that Tyler's spinal fluid continues to be clear of any leukemia. Feel free to join us in our little happy dance at that news.

We reported to UWMC this morning at 8am to get the test dose of the radiolabeled antibody. The doctors will use the gamma scans and bone marrow tests this week to calculate the most effective dose to give Tyler when he gets his therapeutic (real) dose of next week.

In the picture on the left, you can see Tyler in the middle of the 5 1/2 hour infusion of the test dose. The lead box in the lower left contains a syringe with the radiolabeled antibody in it. On the right, Tyler is also getting lots and lots of saline to help his body process all of the radiation through without causing more damage than necessary.

Some of the premedications that they gave to him caused him to be pretty sleepy, so it's been a fairly quiet day for us. Neither one of us slept well last night, so I was pretty thankful to see that Tyler has two beds in today's room. The nurse was kind enough to let me use the 2nd bed and I took a nap this morning too. Now I'm a little less like the Wicked Witch of the West and Tyler is starting to remember why he married me.

We have another gamma scan tonight and then will head home and try to sleep it all off. They say that Tyler will likely feel a little achy and sore tonight and tomorrow, so it is important for him to rest as much as possible.

While we know there are big steps ahead for us, we are thrilled to finally be taking ANY steps towards his bone marrow transplant. Provided everything goes well this week, our next big thing will be next Thursday. Tyler is scheduled to get his therapeutic dose that day and begin his stint as Bubble Boy, the radioactive superhero of the University of Washington.

Day -21 and counting...

For those who want to follow...

Our friend, Hans, has also started a blog to allow us to keep up with his battle. You can find him at http://ftbwtw.spaces.live.com/blog. In case you are wondering about the strange combination of letters, Hans says he is "Fighting the Battle, Winning the War". He posted this week that his white blood counts were down to 62,000. Hooray!!

As for us, we have a 3 day break from the doctor's office! Tyler did get his bone marrow results on Monday and they were a little bit disapointing. His bone marrow biopsy showed signs of blasts. The doctors were not overly concerned about it, as the transplant protocol that he is scheduled for will allow for some presence of leukemia in either his marrow or his blood. As long as his spinal fluid stays clear, we will be able to continue with the transplant.

Tyler continues to work on eating meals again. He fills up after just a small amount of food, so we have to try to eat many several little meals. He has started taking pills again, so I'm pleased to report that we see definite signs of healing. Although he doesn't feel like his throat is back to normal, it's moving in the right direction.

Merry Christmas from both of us!!

Prayers Answered

Tyler just let me know the results of the tests from yesterday and I know many others have been waiting to hear this with us.

0 signs of leukemia in his bone marrow

0 signs of leukemia in his spinal fluid

Hallelujah! It appears the Induction Therapy worked wonders and Tyler is beginning to recover from the side effects. Saturday is supposed to be our target for improvement, so we're hoping that he might be able to start eating sometime over the weekend. I've got lots to be thankful for this year!

Mandy

Testing our Patience

Today is the big day for Tyler's Day 14 tests. He had a bone marrow test scheduled this morning at 11am and a lumbar puncture scheduled at 1pm. The marrow test started as scheduled and they got a great bone chip from Tyler's pelvic bone for the biopsy portion. Unfortunately, when they got to the bone marrow aspiration (where the liquid marrow is drawn), they just couldn't get any to flow. They tell us this is not entirely unusual for post-chemo patients, but I was disappointed that they couldn't get that portion of the test complete. They tell us they will get enough information from the samples they got to determine if the cytarabine worked or not. The next bone marrow will be on Day 28.

The lumbar puncture has been delayed to try to finagle Tyler's platelet count up. The test requires a platelet level of 50 and Tyler has been hovering around 5-15 for awhile now. Added to that, they are not seeing much of an increase with each bag of platelets that he receives. They decided to test him to see if he has developed antibodies to blood products.

Anyways... They gave him a bag of platelets yesterday and 3 units today. After the 2nd bag, his platelet count was up to 33. After the 3rd bag, his platelet count was still at 33, so we're expecting the radiology folks to balk at doing the procedure today. He's got his 4th (and final) unit of the day hanging now so that the platelets can be running while they go into the procedure, but that is our last shot for today.

Hooray! They just announced that they will take him, despite the low platelet count. Hopefully they can get his spinal fluid to flow today. It seems to be a problem for them to get a good sample.

Thanksgiving Blessings

My family has set a tradition of celebrating Thanksgiving together the Saturday before the real holiday. It's nice not to worry about conflicts with the other side of our family and to have a reason to get together with my family. This year was a little bit different than previous years because one cousin gave birth to a young boy a few weeks ago, another cousin gave birth to a little girl on Wednesday (see me holding Audrie at left), my Grandmother had surgery on Thursday, and my husband is in the hospital recovering from chemotherapy. Nevertheless, several of us gathered and discovered that one of the things we are most thankful for is to be a part of the same family. As many of you will likely be spending time with family this holiday, I hope that you find as much joy in spending time with your family as I find spending time with mine.

Tyler continues to fight throat pain, but we are hoping that this week wil begin the slow climb up. Tyler essentially has no blood making ability right now. He's got no white blood cells, almost no platelets or red blood cells. He's been getting transfusions each day to get his platelets and red blood cell levels up to a minimal level. The doctor says that a typical patient might start getting better on about Day 17 after the start of this induction therapy. We are currently at Day 11, so I am hoping to see some improvement over this next week.

He is scheduled for both a bone marrow aspiration and lumbar puncture on Tuesday. If those tests show that the first round of cytarabine had a good result, than they will likely continue with one more round of this induction therapy before proceeding to transplant in January. While I do not wish another round of this chemo and mucositis on Tyler, I do hope that we have finally found the right treatment path to get Tyler healthy again.

Tyler and I thank all of the many hands that have helped us keep our lives going, the many friends who send e-mails and comments to encourage and comfort us, and we wish you the best of holidays!

Mandy

Just Let Me Sleep...

Tyler had his final dose (for the time being) of Cytarabine this morning. Thankfully, side effects are still pretty minimal so far. His throat is starting to get a little bit sore, but we haven't hit major pain yet. Probably the most difficult part of this weekend was just getting enough sleep. Tyler's having trouble finding a comfortable position in the hospital bed. I'll be bringing some of the pillows from home back with me, since he has broken all of those in appropriately by now.

What is most frustrating for me is that he just drifts off to sleep and someone will come in and need something from him, or the IV will start beeping an alarm at us. I wish we could just let him sleep for an hour or two, once he finally dozes off, especially after he had 2 bad nights in a row. Usually the afternoons are quieter than the mornings, so he is trying to get a brief nap in now.

Phew! His cell phone just rang, so I was diving across the room to hit the silence key. I got lucky and got to it after only 2 rings. It turns out that the UWMC was calling us to make an appointment for a test. I suggested that they contact Tyler's nursing staff since he is still inpatient. That seems easiest for now.

Now the IV has started beeping. I think it just isn't our day to find quiet time.

Anyways... Dr O'Meara had good news for us this morning. Although today's blood test results weren't yet in, yesterday's results showed that the blast count in Tyler's blood were down to less than 1%. That's great news and shows that the first 4 doses of chemo have done their job. We hope that last night's results show him down to 0% in the blood. They will test his marrow and spinal fluid next week, for the more sensitive tests. Hopefully they will also show the same kind of improvement as the blood tests.

The side effects are expected to worsen (if they are going to) over the next week, so I suspect that will be the worst part of the month for Tyler. I pray that they will be far easier than what he dealt with for the radiation.

My "son" is staying with Tyler tonight, so I'm headed home to try to catch up on sleep myself.

Plan No 342

So the doctors from SCCA and UWMC had a conference about Tyler today and came up with a new plan of action. They want to put Tyler through Acute Leukemia Induction Therapy. This involves giving him very high doses of chemotherapy for 7 days, then recovering from that for about 3 weeks. The doctors anticipate 2 rounds of chemo, so we suspect Tyler will be in the hospital for the next two months as endures the chemo and recovers from its effects.

The timing and type of transplant are uncertain. They want to see how Ty responds to the chemo and, if they can get him into remission, they will want to move quickly with the transplant. Thankfully, they still think that Scott can be the donor for other types of transplant protocols too. Having a famiy member as a donor enables them to move forward with the transplant at any time.

Their goal is to start the chemo on Monday, so we are supposed to spend the time until then getting Tyler as strong as possible. Eating and pill taking are still challenges, but it is important that we keep working on those tasks to get his body's strength up. He didn't get his IV nutrition today, as our goal has been to get him eating again in preparation to go home. Then when he ordered breakfast, they told him he couldn't have anything by mouth from 9am until 2pm. This kind of interrupted his plans for a good healthy breakfast to start the day. But he got his sedation for the bone marrow aspiration and biopsy today, which was very important. I hadn't realized that he was getting a biopsy today and it isn't something he has gotten before.

While we are disappointed with the news that Tyler will have to undergo two months of bad chemo, I am thankful that we have a new plan and I pray that this is the one that works.