Day 92 - Our Newest Crop

After about 6 months of baldness, Tyler is showing signs of hair again. He says that he is already warmer, but I don't know how that can be when I look at how short his hair still is.

Baldness is an obvious sign of cancer treatment, so I think it will change Tyler's perception of his own health and the viewpoint of those that see him with hair again. Every little victory is a good victory.

With the great news about Tyler's bone marrow aspiration last week being completely LEUKEMIA FREE (!!!!), we can now say that he is in remission.

Hallelujah! Thank the Lord!

Day 91 - Nine Days to Go!

It feels like smooth sailing to us these days. We had a great weekend, with my non-stop eating machine (Tyler) keeping me in the kitchen much of the time. I'm not complaining at all. It's a treat to be able to cook for him and have him actually enjoy eating. I think he probably ate 6 full meals each day over the weekend.

We have talked about how refreshing it is that he is actually hungry again and has cravings for different things. Added to that, Ty has had a release from some of his diet retrictions which have allowed us to eat some of our favorite foods again.

With only 9 days to go at the SCCA, I am getting so excited to mark the passing of that milestone. This time since the transplant has been so much easier than the leadup to it. I'm actually thankful that we got much of the stress and agony done in the fall, although we are still suffering from some of those effects. His stomach issues have definitely improved and we are hopeful that his foot will be healing over the next several months.

His physical therapy is going well and they are starting to wean him off of the Tacrolimus, which is his immunosuppressant. Reducing this medication should allow his tremors to decrease and his neuropathy to decrease. I'm getting excited to see him moving around yet.

We have been charged to keep an eye out for rashes or intestinal issues which can be a sign of Graft Versus Host Disease (GVHD), but they have a schedule that will implement. For this week, he is taking 2.5mg in the morning and 2mg at night. The only reduction was the nighttime dose for this week.

Light the Night with us this year!

As we are approaching Day 100 of Tyler's transplant journey, we are starting to look ahead to the Light The Night Walk that will take place this September. Tyler and I are planning to walk around Greenlake on Saturday, September 26th to raise money for the Leukemia and Lymphoma Society. This will be the 3rd year that we have participated as Team Firefly and we are hoping that you will join us! Participating in Light The Night Walk is a positive and inspirational way to support Tyler.

Our goal is to raise more than $5000 as a team, beating our record of $4712 from the first year. The more people that are willing to join our team, the easier it will be to accomplish this goal! We have had young children and senior adults on our team, so all ages and abilities are invited.

Funds raised by walkers provide:
- Lifesaving blood cancer research
- Financial assistance to cover patient expenses for transportation, medication and testing
- Free educational materials and events for patients and their families
- Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
- Comprehensive, personalized assistance through our Information Resource Center

We have been the recipient of this research, as well as receiving financial assistance that helps to cover the cost of our prescription and medical copays and reimburse us for the mileage to and from the doctor's office. I know that many other patients will benefit from the funds we raise this year.

Light The Night Walk events are evenings filled with inspiration. Carrying illuminated balloons, thousands of walkers - men, women and children - form a community of caring, bringing light to the dark world of cancer.

Fundraising can be as easy as sending out an e-mail to friends, family, and coworkers, announcing your participation and inviting them to help you meet your personal fundraising goal.

To join our team, you can post a comment or send us an e-mail.

The End is in Sight

After today's appointments, we are pleased to report that we have a final appointment for SCCA and... our first appointment back with Dr McGee! The last day that Tyler will be an SCCA patient is May 7th. Halleluah! While we have worked with some amazing staff there, we are still excited to mark the end of our journey with them.

After reviewing his blood tests today, they told Tyler that he could relax his potassium diet guidelines. Thank goodness for that! I never realized how much I rely on beef or pork or tomatoes or beans or spinach or milk in my cooking. To be able to use those again means that Tyler and I get to start eating good food again.

In fact... Tyler wanted a steak to celebrate his final lumbar puncture, but it wasn't allowed last week. I'm thinking that it might be time for us to visit the Keg for a great dinner. As his parting goal from the nutritionish, Tyler is supposed to work on gaining a couple of pounds each month over the next several months. I think that most of that will be muscle mass as he continues to increase his activity level.

Also, they got the results of his bone marrow test. We are thrilled to report that there is NO SIGN of the leukemia in his bone marrow.

We are counting our blessings today!!!

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

The Long and Winding Road

A beautiful Beatles song, and a good description of our journey. I would like to first apologize to everyone that I haven't been posting for so long. I have been fully concentrating on my recovery and letting my amazing wife take the reins with the blog. I have heard nothing but wonderful comments from friends, family, and other interested parties from around the country about her ability to keep everyone informed. My time has been filled with blood draws, lumbar punctures, dealing with a nasty foot drop/neuropathy, medication changes, fatigue, weight loss, stomach issues, etc.....

I have just today reached a physically and emotionally important milestone. I had my final Lumbar puncture with chemo injection, and when I came back to the waiting room and saw my mom's face my smile couldn't have been bigger and put up what can only be described as a crazy double Tiger Woods fist pump! I also this week had my first physical therapy appointment up here in the north end and it gave me a lot of confidence that I'm going to recover fully from this very difficult last several months. I feel better all the time, and each day gives me more and more confidence in a full recovery. I know anything can happen but I have to move forward with only positive thinking.

I have to say that I have the most amazing caregivers! My wife, mom, dad and brother, in particular, have been watching me like a hawk to make sure I do all the right things and I couldn't be more blessed or thankful! My mom travels from Sequim every week to be with me Tuesday thru Thursday, and Mandy takes over Friday thru Sunday (and nightly), my dad watches me on Mondays, and my brother fills in whenever needed. I have recently made it to the point where I can be alone for stretches and I can drive again!!!

I know my very good friend Hans believes I will be back out on the pitch again soon pulling "the move" out on unsuspecting defenders but I think it will be sometime next year before I can think about soccer. I'm hoping to be able to swing a golf club in a few weeks when they take my Hickman line out.............I feel that golf will be a really good physical therapy for me.

I really hope to be able to visit and have visitors soon since its been so long since I've been able to socialize. I also am looking forward to being able to trek over to Qwest field and watch the amazing Sounders play soccer. I miss everyone so much and I am looking forward to wonderful times to come.

I wish everyone the best and will be posting more often.

Take care,

Tyler

Foot Drop

One of our friends asked for more information on Tyler's foot drop, so I thought I would take a minute to post a little bit more information about it. When Tyler went into the hospital last fall, he apparently pinched a nerve while he slept. Normally, an individual would feel the pinch and shift their legs, but Tyler was under the influence of morphine at the time. After much testing, the doctors gave Tyler their best guess on the cause and recovery.

Tyler has experienced very little change in the condition of his foot since then. The chemotherapy and the radiation and the medications he is on now all interfere with the nerve's ability to grow back.

When moving around anywhere (except at home), Tyler wears the brace pictured above to allow his foot to move at a 90 degree angle. If he didn't wear his brace, he would be prone to trip over his own toe, as it drags downward. We avoid uneven ground, as his ankle is locked into position and can't roll to accomodate different angles of ground.

With the foot drop, Tyler lost much of his balance and coordination and actually had to work with a physical therapist to learn how to walk as steadily as possible with it. He begins more physical therapy this week, so we hope to see him building more muscle strength with the exercises that he gets from them.

The pinched nerve also causes significant pain for Tyler all of the time. It's the number one barrier to restful sleep, as the neuropathy makes his leg extremely sensitive. We've got some strategies for working around his foot and leg sensitivity, but I do hope that Tyler notices some improvement in the next 3 months or so.

We hope that his foot drop will improve, but there is no guarantee of that. There is a chance that his body will never be able to recover from the trauma of the transplant AND the pinched nerve. As Tyler is beginning to get weaned off his post transplant medications (at least a few of them), there is hope that we will begin to see signs of progress. There was a short bit of time pre-Transplant that he was actually able to move his toes a little bit again. We are watching for those signs of success again now.

As for now, we'll wear a brace and work with a physical therapist to do all that we can do to improve his muscle's strength and abilities.

No News is Good News

Sorry for my slowness in posting, but we've had lots to keep up with recently.

First, some good news that is completely unrelated to CML... My sister, Bonnie, gave birth to a beautiful little girl named Rachel. Bonnie and Joe (her husband) are going to be outstanding parents, so I am excited to see them blessed with a cherished daughter.

Secondly, I'm pleased to report that Tyler's counts have improved. His potassium is back down into normal ranges (4.6 with a normal range of 3.7-5.0), so we are allowed to have mid range potassium foods again. When we got the first list of High, Medium, and Low Potassium food choices, the only protein options on the low potassium list were eggs and pecans. That doesn't really give us many options for healthy or interesting meals.

They have since expanded the list a little bit and, with the addition of the medium postassium proteins, I'm able to start cooking again. I must admit that this probably makes me more happy than Tyler, as I'm a little more passionate about food than he is.

Test Results from Monday:

WBC: 5.68 (3.7-10.0)
HCT: 28% (38-50)
PLT: 74 (150-400)

Bonus Visits -- Not On Our List

We have been scheduled for a few bonus doctor's visits this weekend, as they don't really like some of Tyler's counts right now. His potassium has climbed again, as well as his creatinine. These are both signs that his kidneys are not able to eliminate all of the waste from his body. They are restricting his diet again and have sent us an IV bag to infuse each day for the next several days.

On the side of fun, we watched the Seattle Sounders soccer team defeat Toronto after getting home from the lab draw today. It's fun to have a Seattle team to cheer for, especially in the sport that we love so much! With only a month left in the post translant period at SCCA, I am starting to dream of life after cancer. Not that it will ever disappear from our lives entirely, but we hope that it once again fades into the background of our lives.

At the 100 day mark, provided Tyler has no major complications, we will be referred back to Dr. McGee (our original oncologist). We love the staff there and have missed the consistency of our care with them. Additional milestone will occur at 6 months and 12 months, but I am just trying to focus on getting to the 100 day point for now.

We hope to report that Tyler is feeling better soon and ask that any prayers being said on his behalf would include his overworked kidneys.