New GADGET DRIVE for Margy's Transplant Fund

Announcing: New Gadget Drive to help fund Margy's bone marrow transplant.

Recycle your old, used electronics for free and raise money for Margy's fund at the same time. Here's how it works.

1. First, collect your old electronics like cell phones, mp3 players, calculators, laptops, etc. Next, go to: http://margytransplant.gazelle.com/ and plug in the your gadget's information.
   
2. Send your gadgets to Gazelle for free (they email prepaid shipping for items of value)
3. Gazelle donates the value of each item to Margy's Transplant fund. Easy!

It is estimated that 70% of the toxic heavy metals in our landfills comes from just 2% of our trash - discarded electronics. So don't throw away your old gadgets. Clean out your junk drawers, help the environment, and raise money for Margy's transplant at the same time.

For example, we are recycling Meredith's last phone ($6) and my ancient phone (no value). Gazelle emailed us a prepaid shipping label for Meredith's phone (not mine). So we're boxing them both up and sending them in using the same prepaid shipping label (I checked it out with them and it's okay). 6 bucks may not seem like much, but every dollar helps. And if we all spread the word, this gadget drive could really make a difference for Margy, not to mention reduce pollution. Please forward this information to all your friends and family, especially the "techies." And encourage them to do the same. Thank you.

If you have questions, see Gazelle's FAQ, or use Gazelle's online chat help. Feel free to email me too (knuthill@yahoo.com). Thank you for recycling your old gadgets to help raise money for Margy's bone marrow transplant!
Happy Holidays, Knut & Meredith

They say "Patience is a Virtue"

They say that "patience is a virtue", and this has certainly been a test of patience!

It has been some time since our last post. This has been due, in large part, to the fact that we are still in a holding pattern. We do not yet know when in early 2010 Johns Hopkins will be ready for the transplant. In the meantime, however, I continue to respond well to the Vidaza, which I have been receiving once a month since December 2008. This is administered via IV for 7 straight days. I am feeling well, and staying on course with daily exercise and very nutritional meals. Protein, protein and more protein is very important in the diet to build my body for the transplant to come.

During this time of starts and stops and waiting, I cannot adequately express how much it means to receive so many expressions of support. Support that has been displayed in so many ways by so many people - family, friends, business associates, and even total strangers. To all of you - THANK YOU! So often, just when a little (or big) lift is needed, there will be some form of support received that helps to get me through that moment.

Again, thank you everyone for your continued support, love and prayers.

New hope for MDS patients - a drug called Vidaza

This is the drug my mom is on and has helped hold her cancer at bay until she can get a bone marrow transplant.

Transplant Postponed

The day before the chemo for transplant was to begin, I was cleaning the house very vigorously in preparation for my mom's immune system to be challenged during her treatment. I got a call from the hospital which appeared on my phone as IPOP 911. OH NO. It was my mom's transplant coordinator. She told me I needed to come over right away. I ran over to the hospital and she told us that my mom's resistance to transplant (antibody count) was still too high to give us the best chance of success (donor engraftment).

While this is a huge disappointment to all of us, doors are still open. The hospital always has a trick up their sleeve. They are currently researching the ability to remove all bone marrow through radiation and chemotherapy and then give patients transplants with their half match donors. This has been the protocol for full matches. The good news is, due to medication my mother has been taking, the cancer is in remission and they would like to take the opportunity to learn more from the research before pursuing this option possibly sometime early next year.

Thanks to everyone for your support thus far. It has been quite a journey and as my sister put it in an earlier post, a roller coaster. I call it an exercise in patience. My mom is such a fighter and her strength through all of this has been inspiring. She is determined to combat this disease and is anxious to put this behind her. Your phone calls, emails, packages, visits, cards and flowers really uplift her spirits, so please keep them coming.

Resistance is up, but mom's raring to fight!

We found out today that Mom's resistance to transplant went up after going steadily down last week. The hospital has responded by increasing the treatments so on what were her days off she'll be having treatments. This means she'll get treatments every day with the goal that the transplant date will not change. Mom's spirits are high and the fighter in her just motivates her to try harder. She's not taking this laying down!!

Letters, Packages & Visits - Thanks!

My mom received some packages and letters today and Friday. Thanks for all the thoughtful wishes and items! We love getting mail and when it comes we both sit together as she opens them and enjoy it together.

We also received some visits yesterday. Cousin Frankie stopped by and later my mom's niece Lea and her husband-to-be Scott stopped by. Lea and Scott brought us things we'll be able to use to entertain ourselves over the coming weeks. Thanks for the company and visits! They mean a lot to us as we prepare for mom's chemo which begins this Saturday.

In other news, her resistance to transplant is decreasing every day as she goes through her pre-transplant treatment which continues this week.

Past week's progress and last week before chemo

My great Aunt Sandy spent the last week plus with my mom, cooking her great food and being a great support. She stayed until Tuesday to transfer the knowledge of caregiving to me once I arrived Monday. Thanks Aunt Sandy! She's a tough act to follow.

Mom went through plasmapheresis treatments this week without much incident, which is wonderful. Wednesday mom's blood pressure dropped some during plasmapheresis, but later in the day despite her fatigue from medication, she still motivated to do a nice long walk. Her blood counts have been pretty good considering and her blood pressure was normal today, and actually higher than mine since I am pregnant. Good job mom! They give her medication which makes her tired when she gets treatment, but today she was very chipper.

This is her last full week before chemotherapy starts on August 1. Chemotherapy will continue for several days leading up to the transplant which is currently scheduled for August 7. This is definitely a great time to send letters, words of encouragement or to call or visit mom. If you don't have her address or phone, just contact us here on the Contact Page. Please send your prayers, good energy and thoughts to her in the coming weeks.

Roller Coaster

I think it's safe to say that these last few weeks have been a roller coaster ride! With some last minute changes in the treatment plan, we are trying to refocus on the upcoming transplant. Last week it was finalized that Meredith will be the donor. The date is likely August 7. We won't know until about a week before the transplant. Margy is undergoing at least 8 rounds of plasmapheresis to remove antibodies that she developed to foreign B-cells. The goal is to remove enough of these antibodies before the transplant, lessening the chances of rejection.

So, things are underway! It has been a long time coming, and with great patience, we finally made it! Margy is in Baltimore now and started her pre-transplant protocol. Margy had her pheresis catheter placed on Tuesday and the operation went very well. Her first day of plasmapheresis was a bit rough, but they are making necessary adjustments to her treatment so that she will tolerate it better. Aunt Sandy is staying with Margy this week. She brought a whole cooler filled with homemade dinners, jams and baked goods. Thank you Aunt Sandy! The torch will be passed to Aprille when she arrives on Monday.

It's been a long journey so far and there is still a lot ahead. We thank our friends, family, and people we have never even met for your continued support and generosity. Please keep praying for a successful transplant!

HAPPY MOTHER'S DAY

Happy Mother's Day to all our family and friends! I am very blessed with my family; and thank God every day for their love, friendship and support.

I am so excited that Meredith and my grandson, Bekan, will be coming soon for a visit. Talking to Bekan over Skype is great, but not as great as being with him in person. His Oma (me) misses him very much!

I continue to feel well, and am maintaining a good diet and regular exercise. The medication the doctors were giving me the past 3 months did not have as much of an impact on my b-cell antibodies as they had hoped. As a result, they are testing the reaction my blood has with my sister's blood. The results of this will take about 2 weeks. Depending upon the test results, the doctors may perform plasmapheresis on my blood right before the transplant.

The continued support, shown in so many ways, from family, friends and associates means so much. It goes a long way towards keeping my spirits lifted and outlook positive. So, a most sincere thank you to everyone!

Can't Turn Down a Bonus? Donate it...

What would you do if your boss gave you a bonus but you knew other people in your organization were being laid off? Donate it to a great cause! Pass on the goodness, dodge all of the guilt.

A co-worker of someone in the family recently received a modest bonus for work this year following news that their company was also making cut backs. After all of the hubbub about bail out bonuses on Wall Street, it just didn't feel right to hold onto the unexpected bounty. The first reaction was to refuse the extra compensation. Having no luck that way, and knowing about Margy's life-saving bone marrow transplant, they did the only thing that felt right -- invested it in Margy's only shot at a cure. What a wonderful gesture! Thank you!!

TV Story on ABC Harrisburg

On March 23, 2009, a TV spot aired on ABC TV in Harrisburg (WHTM) highlighting the fundraiser: Crossing Michigan for Margy's Transplant.

Record Eagle news article (Traverse City)

Today's Record Eagle paper is running a great news story about Mom and our fundraiser for her bone marrow transplant expenses. Please comment online and pass it on!

Knut to be on WTCM's Monday morning radio show

UPDATE: In case you missed it, Margy taped the radio interview this morning on FM-WTCM! Here it is:



Thank you DJ Colleen Wares for having me on and for helping tell our story.

OLDER: For you early risers (not that early), I'll be on WTCM Jack O's Morning show on Monday morning at about 7:40 AM. Listen live online (click Listen Live) at their website: www.wtcmi.com

Detroit Free Press article

The Detroit Free Press ran a story about our fundraiser for Margy's Transplant today (Mon., March 22).  Please read it, comment on it, and pass it on.  Comments are already coming in from Detroit readers.  For instance, one comment writes ". . . there should be nothing stopping from proceeding with any life saving procedure . . . [instead of keeping] it for the ones that can afford it."

The Finish!

I just reached the Finish at Lake Michigan! After 205 miles, 3 pairs of skis, 11 days on the trail, 8 counties, 28 rivers and streams (one without a bridge), 32 snickers bars, 46 liters of water and hot cocoa, - 6 to 52 °F temperatures, Margy's fund with the National Transplant Assistance Fund received more than 100 contributions, and NTAF provided $1,500 in additional matching grant money. Together, we raised over $11,000 so far for Margy's bone marrow transplant expenses! And counting! Donations are still being accepted online and by check. Here are picture from the Finish. Margy told me before the finish how touched she is by the journey across Michigan and the outpouring of support and prayers for her. She is both humbled and in awe of the incredible support she has gotten to this point.

On behalf of Margy and her family, thank you so much for supporting this fundraiser, for following my adventure across Michigan for her, and for supporting her life-saving transplant. -Knut

Lake Michigan seagulls spotted

2 hours into day 10 I'm spotting shore birds. can't be far now!!!

Day 10 & FINAL Day 11 planned (Crossing MI for Margy)

Plans and a banner are ready for the finish in Empire. Here's the outlook for skiing vs. hiking to the Lake Michigan shoreline:

As shown in this google earth picture, the snow cover near Empire is patchy. Weather forecast is for possible snow tonight and tomorrow morning! But any new snow might melt by mid day Saturday. A snowmobile trail for most of Sunday's route make chances good for skiing to the Finish. Skis may be up on my back for Saturday though. We'll see . . .

Watch the website, blog and facebook for possible updates from the Finish in Empire!

Day 9 (Crossing Michigan)

Global Warming is in effect. Half day today over wet snow and slush. About 9 miles covered, 171 miles total. Other ski organizations are picking up on this cross country ski trek. The finish is another couple days away. Join me at the beach park in Empire, MI on Sunday (March 22 at ~5 PM) as I reach the finish of this 200 mile journey to raise support for our Mom's bone marrow transplant. Thank you.

Day 8 (Crossing MI): Wet 'n Wild

Day 8 (22.6 miles) of Crossing Michigan for Margy's Transplant was wet, warm, and wild!


Skiing on wet snow and slush is very slick. With many near falls, I'm still not sure how I managed to stay upright. I had to step off the skis at the steepest valleys because it was too dangerous. At the bottom of one of them was a stream with no bridge. Luckily, there was a fallen tree branch just below the water's surface reaching most of the way across. I knew there was no turning back after I tossed my skis to the other side. Halfway across balancing with ski poles, I was surprised that the icy stream below me was more than a couple feet deep. It wouldn't have been the end of the world, but finishing the last 8 miles with "dry" boots was much nicer. Above is a picture of the stream (a Boardman River tributary) and an elevation profile of today's hills. See more pictures from the day and a map here.

After two ~20 mile days in a row, I'm pooped. My right foot is bruised, and I may only have enough energy to do a half day tomorrow. 162 miles covered so far. Another 50 miles to go!

Dat 7 of Crossing Michigan for Margy's Transplant

18 miles today, 139 total. From Bear Lake, I skied to the west of Kalkaska, MI. Half the day was over packed down snow on forested snowmobile trails. Lucky for me and other cross country ski bums, this winter seems long. But many hungry deer were out scrounging for food. Then I followed Nash Rd., a long road leading to Kalkaska. I skied up on the plowed snowbank. Once in Kalkaska, I stopped for some sweets and human contact. This is the first time I've stopped to actually sit down during any of my days out. :^) My new monocular (thanks BJ and Holly) helped me find a dropped glove after doubling back. I finished by picking up another snowmobile trail west of the city. Though my foot hurts, the snow is melting, so I'm gonna go for a big day tomorrow.

Days 7 and 8 planned - Crossing Michigan for Margy's Transplant

After some rest, I am heading back out on the trail for another two or three days. I hope to cover close to 40 miles. It should start off cold tomorrow morning with the windchill below zero ('F), so this week's fresh snow should be good. But warmer temperatures will melt it away over the next few days. Hopefully, there will be enough snow to continue skiing. If not, I'll have to trek through mud and slush in hiking boots and/or maybe carry the skis at times. Thank you for everyone's support of my crossing Michigan for my mother-in-law's (Margy Davis) bone marrow transplant fund.

News Coverage of the Trek Across Michigan

The Ann Arbor news in Michigan was so inspired by Knut's efforts to help out his mother-in-law that they wrote up an article on Sunday, March 1.  Thanks, Ann Arbor news!  It was a well-written article.

Click here to read the article

One correction to the article is that we do not currently have a definite date of transplant.  We will know in another month or two, however.

NEW VIDEO - Crossing Michigan for Margy's Transplant

Here is a video of Knut Crossing Michigan to raise support and money for Margy's Transplant.


Special thanks to Bonnie Baker for giving us permission to use the beautiful song she co-wrote with Paul Sikes called "The Extra Mile." There is a version of this movie on YouTube too.

Day 6 (Snowstorm)

Day 6 of Crossing Michigan for Margy's Transplant was snowy!

I skied from the city of Grayling to Bear Lake. 20 miles covered today, 121 miles total since leaving Lake Huron. The weather was a well forecasted winter storm; 14 - 23 ' F (4 - 11 ' F windchill), with heavy snow. Snow fell at a rate of up to 1-2 inches an hour, and 8 inches of new powder piled up before I stepped off my skis. The route was almost all snowmobile and atv trails through pine forest, some of which was shared by Shore to Shore Trail. Lots of snowmobilers out. I had to listen carefully and get ready to step off the trail frequently so I didn't end up under a bear cat. Fresh snow and my third pair of used skis this trip (thank you REI!) made for fast conditions. My arms and legs are tired after pushing it hard today. As hard as it feels to keep pushing, I know my challenge is nothing compared to what Mom must feel everyday. See more Day 6 photos and map here.

Knut Passed the Halfway Point

This past weekend, Knut passed the half way point on his effort to "cross Michigan". You can read about the legs of his trek so for by visiting his updates. The time, physical and mental effort that he is putting into this is incredible. Thanks Knut! As for me, I continue to do well while waiting for the doctors to retest me to determine when we can once again begin preparations for the transplant. It is truly a test in patience. Thank you to everyone for their continued support! It is very uplifting and greatly contributes to my ability to tackle each day.

Day 5, Halfway across Michigan!

Skied to Grayling from M-72 (near the south branch of the Au Sable River). Covered 24 miles today, my longest day so far. Whew! That means I passed the 100 mile mark, 101 miles total! I also crossed Interstate-75 so I am more than half-way across the state :^) Today's weather was: 16 - 27 ' F, with light snow. It was a very long, slow day. Over 9 hours on hard ice and snow with a few unplanned side tracks to find the route. I started on ungroomed shore to shore trail through woods. Then I lost the trail because it wasn't marked well and the path on the ground was covered in snow. I picked up local roads, and then got back on trail which followed more back roads and atv trails to finish. I need new skis again though as the second pair are already really beat up. I don't think they are long enough for my weight plus a medium sized pack, so I will ask REI for another pair. They have been great!

Another transfusion

Yesterday Margy had another transfusion. This makes a total of 12 units since this began back in October. Transfusions take several hours and every transfusion brings with it the possibility of risks. The medication she is taking lowers her blood counts even more than usual. It is common for people undergoing cancer treatment to need transfusions. Keep her in your thoughts.

Support Groups for Patients and Their Families with Cancer

If you are a cancer patient, family member, or caregiver for someone who has cancer, the Leukemia and Lymphoma Society (LLS) holds support groups. LLS has chapters all over the U.S. I attended one and found it immensely helpful. Not only is it good to know you are not alone in fighting cancer, but it is helpful to learn about other resources you may not know are available to you. Where I live there are several groups in my metro region, each of which hold support groups. To find a support group near you, visit http://lls.org to get the number of your local chapter.

Thanks for your encouragement

Thanks to everyone for so much support and encouragement during my trek across Michigan. A friend from Alaska, obviously used to the cold, just wrote: "Hope you don't freeze anything important" :^) Thanks again everyone.

Next Crossing Day Planned

Had to take a few days off because I didn't have anyone to take care of Bekan, my 22 month old. I plan to hit the trail again this weekend for another real long day. Might have to play it by ear with the weather to see if Saturday or Sunday's better. Saturday's forecast is actually for showers up north! Being wet on slippy trails with temps in the mid-30's all day could be dangerous . . .

TOP TEN REASONS why Knut is Crossing Michigan for Margy's Transplant

1. To call attention to Margy's enormous financial burden for her life-saving bone marrow transplant.
2. Because the trail markers along the Shore to Shore Trail are BLUE, Margy's favorite color.
3. Because like Margy's battle with cancer, crossing Michigan on foot in the winter is a long, tough journey that requires strength and endurance.
4. Because cross-country skiing the equivalent of 7 to 8 marathons is harder than running just one.
5. Because like so many of us, he loves Margy and will do anything to help her.
6. Because skiing uphill warms away the chill.
7. Because it's not fair to ask someone to come up with thousands and thousands of dollars for a vital transplant right when they're dealing with the difficulty of needing and receiving one.
8. Because crossing Pennsylvania instead would take forever.
9. Because both of her daughters are suitable bone marrow matches, so we can't let the costly expenses prevent her from receiving the proper treatment and recovery therapy.
10. Because if it was your Mom, you'd do everything you could to help her too.

Update On Margaret (Margy)

In searching for a suitable donor, it was found that my sister, Nancy, and both of my daughters, Aprille and Meredith, were half matches. In that Aprille volunteered to be my caregiver during the 2 to 3 month transplant process, Meredith was then chosen as the bone marrow donor.

Preparations were made to relocate to Baltimore for several months for the procedure. The transplant date was set for January 20th. Extensive tests were performed on Meredith and me the first week of January. The day before I was to begin pre-transplant treatment of chemotherapy and radiation, the final matching and mixing of our blood threw up a red flag. A rare situation occurred as a result of one or more of the blood transfusions received since October 2008. That is a white cell or two eeked through and I developed a B-cell antibody. This B-cell antibody makes the possibility of engraftment of the new marrow from Meredith almost nil.

So, the plan was to send me back home and to put me on a medication that is to kill off the B-cell antibodies. This medicine has been used for whole organ transplants for years to kill off the B-cell antibodies after the transplant to prevent rejection, but it has never been used in a pre-bonemarrow transplant situation. The plan is to test me after 3 or 4 months to see if the B-cell antibodies have been removed from my system and then move forward with the transplant.

I will continue to need blood over the next couple of months as well as during the transplant period. So, now we wait and continue to pray.