Team Suzie

Final Tally - Light the Night

2009-11-09T07:25:00.000-05:00

With all donations in, Team Suzie collected a total of $1,730.58 for the Leukemia & Lymphoma Society - quite a feat! The goal I set for the team was for me to raise $1000 and then for each additional team member to raise $100 - and we met our goal. Thanks again so much to the entire team!

Update from Mom & Dad's blog

2009-10-26T10:29:00.000-04:00

I wanted to paste in a post from the blog my parents maintain regarding my mom's health:

Friday, October 23, 2009
We're delighted to report that our meeting with Suzie's donor went well. We met him, and his parents, at a restaurant in St. Louis where Bruce and Suzie had well over an hour to both eat and learn more about each other. He's as kind as we hoped and is even willing to spend time counseling a donor brought into the fold by the drive Lisa engineered earlier this year. This is all so amazing.

Last week, we traveled to Boston to spend time with Lisa, to participate in a 'Light the Night' fund raising walk for the Leukemia and Lymphoma Society and to help raise funds for the MPD Foundation. Although back to back Northeasters forced us to cancel on the walk, Suzie and Lisa raised more than $500.00 selling hand crafted items donated for this purpose by friends and family and/or items they'd made themselves. All who participated by crafting the items sold or in the sales effort are pretty kind themselves!

Talk about courage: all this has been achieved in spite of an acute bout of graft versus host disease. Left untreated, this caused a significant rash as well as painful swelling and itching in both of Suzie's feet. Doctors were able to offset these symptoms through the aggressive use of Prednisone but these treatments led to the loss of body weight and muscle tone as well as a significant increase in her sugar levels. We're tapering off now and are prayerful that we won't have another bout with steroid induced diabetes.

We'll keep you posted!

Mike

Hanging Up My Sneaks ...

2009-10-20T13:28:00.000-04:00

Well, at least in terms of endurance events like TNT and walk events like LTN. In the 2+ years since I signed up for the Nike Women's Half Marathon in San Francisco, I have raised over $8800 for the Leukemia & Lymphoma Society. As rewarding as these experiences have been and as proud as I am of these efforts, I think its important to focus my efforts and energies a bit more so that I can make a greater impact.

A Cause for Hope will absolutely be continued - I so much enjoyed working with my mom on this project. She also has been so focused on crafting beautiful items. And with this winter coming and the swine flu abundant, I think this will help her deal with spending the majority of her time at home. We recently posted a shop up on Etsy and she & I will continue to put items up as well as accept donated handmade items from family & friends. All donations raised from ACFH go to the MPD Foundation.

I have also recently put the pieces in place to start selling my handmade jewelry. I have launched the Park Lane Designs blog already and am finalizing the pieces for the Etsy shop I have set up. My intent is to donate 1 piece of every 10 that I make to the ACFH project. I hope to grow this into a sustaining business - who knows where it will go!

And given that my high school Cathy just donated her bone marrow yesterday as a result of the drive I coordinated in Ridgefield back in June, I plan to continue volunteering with the Be the Match organization to assist in local drives and spreading the word about the importance of Bone Marrow Donation.

In a sense, I have felt like I have been running in a million different directions for the last 3+ years since my mom was diagnosed - its time to slow down a bit but still give back. The fundraising efforts that surround the Leukemia & Lymphoma Society are well established and is supported by nearly 1 million volunteers and raised $256 million in FY08. The MPD Foundation raised $1.5 million for FY08 for research and grants and the Be the Match organization raised $11.4 million for their FY08. As smaller organizations, volunteers are so critical.

I also chose to remain with these two organizations since without Be the Match, Bruce - my mom's donor - would have never been located. And without the MPD Foundation, the funds necessary to research treatments for myelofibrosis may not be raised. And those treatments are our hope.

I'm not sure what that means for this blog or how often things will be posted since I maintain the ACFH site for that project and I likely won't put a note on here each time I volunteer at a drive since the majority will be local and those may be better advertised on Facebook or via email. We'll have to see ... for the time being, I'll leave this site up and active. Regardless of whether this blog stays active or not, one thing that will always be true is that I will forever be on my mom's team in a hope for a treatment or even a cure.

Today is the Day ...

2009-10-19T13:46:00.002-04:00

Someone from the Be the Match Bone Marrow Drive in Ridgefield is giving someone a second chance at life today! How cool is that?!?

One Thing You Can't Control ...

2009-10-15T12:39:00.001-04:00

... is the weather! That big green area is meant to be over Boston right in time for the walk ... that pink and blue you see? That would be ice and snow ...

It appears that Winter has arrived early in Boston! According to the weatherman, we are experiencing the temps of Thanksgiving! And its supposed to rain tonight ...

So in the interest of all of us staying healthy, Team Suzie will be Light-ing the Night at a local establishment! It was a tough decision but it appears to be in the best interest of all involved.

We still met our goal - our team raised $1700 and still counting!

Thanks to all known donors & signed up walkers thus far:

Anna Street Studio
Aunt Diana & Uncle Jeff B.
Angi B. & family
Andrea C. & family
Jeannie & Chris C.
Josh C.
Laura C.
Jaime C. & family
Jay C.
Linette D.
Michele D.
Dave F. & family
Mike & Suzie F.
Nancy I.
Cindy J.
Jess K.
Becca L. & family
James L.
Kevin M.
Melanie M.
Karen M.
Diane M.
Ruth M.
Ray M.
Chris & Meg M.
Ken O.
Whitt P.
Karin P.
Tamir S. and family
Kristen S. and family
Jen V.
Jenn W.
Kristen & Leo Z.

How Did We Earn $155 in Donations in 2 Hours?

2009-10-12T10:37:00.000-04:00

In two words - we shopped! :)

Anna Street Studio in Portsmouth, NH has the cutest line of handbags that you can purchase already made or you can design yourself. This past Saturday, 6 girlfriends & I went to their Market St. shop to design our own handbags and also raise money for the Leukemia & Lymphoma Society Light the Night walk this coming Thursday night.

Carrie Saunders is the co-founder and owner of the shop. Not only does she have a really unique product - the handbag I bought will have 3 looks when all is said and done - the handbag party was such a fun evening! The store was closed for the duration of our party, so we had a run of the shop and the ability to spread out the fabrics and spent time making our creations. What was so interesting is that even though we have all been friends for quite some time, we all designed very different bags that reflect our personalities. It will be about 4 weeks until our orders are ready, and then we'll venture back up to Portsmouth to pick up our custom designed bags!

Overall the whole evening was a blast! We also a great meal at Cafe Mediterraneo and then met up with friends from high school after dinner!

It's a GO!!

2009-10-02T16:42:00.001-04:00

I'm SO excited to let my reader(s) (hi Mom!) know that we have a match! As I mentioned in earlier posts, one of the people that signed up at the Ridgefield drive back in June has been undergoing testing to see if the bone marrow donation could proceed. I'm very pleased to let you know that this person has been matched to a patient! The procedure will take place during the week of October 18th. As the family member of someone who received an anonymous donation, I can only imagine what the recipient's family is feeling right now!

I want to again extend my thanks to all involved in the drive - what you did that day in June MATTERED:
- Chris M. of the Be the Match organization
- First Congregational Church of Ridgefield and Mrs. Wein
- My AWESOME friends and volunteers: Marabeth, Jen, Dina, Kirstin, Karin, Kristen, Jen & Cary
- All people who signed up that day

I find it so interesting, too, that today is Mahatma Gandhi's birthday (thanks Google!). One of the quotes I've had posted as I've worked on this blog and other efforts has been his: "You must be the change you wish to see in the world."

Two Weeks to Go & a Shout Out to BU!

2009-10-01T09:33:00.000-04:00

Linette - a close friend and fellow walker - has collected $165 at work! Linette has had a very challenging summer, but still signed up to walk with Team Suzie on October 15th. The fact that she signed up despite all that has been going on means more to me than I can even say. And even though this is not a cause that directly impacts her family, she will be out with our team in just two weeks.

She raised the donations by posting the walk form on her door - and her team in the Institutional Research department responded!

To give a sense for what these donations have accomplished thus far:

* A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.

* A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures

And there is another $15 to apply towards other important ways to support the Leukemia & Lymphoma Society. So the team at BU has made a difference to a family facing a blood cancer - I haven't met most of her team, but wanted to send my thanks for their support!

Quick Update - Maybe Match

2009-09-21T16:38:00.000-04:00

In an earlier post at the beginning of the month, I wrote about an individual that signed up at the drive to honor my mom & her donor and that there may be a match for a patient in need. I just learned that this person is a match and is moving forward with the next steps for testing! If the donation goes forward, the transplant will be mid to late October.

The type of transplant will be the Peripheral blood stem cell (PBSC) transplant. From the Be the Match site:

The same blood-forming cells (sometimes called blood stem cells) that can be donated from the bone marrow are also found in the circulating (peripheral) blood.Similar to a platelet donation, the donor's blood is passed through a machine that removes the needed cells and then the donor receives the remaining blood.

The individual will have some minor symptoms during the donation process, but according to Bruce, my mom's donor who also underwent the PBSC process, it mostly felt like the flu.

Its so interesting that this news is coming this week - as my dad writes in their blog Nani's Great Adventure (reminder there is music on this blog), my Mom is meeting Bruce in person! Bruce and his family are going to be in St. Louis so my parents are driving over so that they can meet. I'm so excited for both my mom and for Bruce! Since their communications began earlier this year, they have become pretty close in their phone and email conversations. I can't wait to hear all about how the visit went!

A New LTN Team Member!!

2009-09-14T17:20:00.000-04:00

A dear friend and former coworker of my mom's at Dr. Cassel's office in Ridgefield has joined Team Suzie - welcome Ken!!

Ken's fundraising page can be found at: http://pages.lightthenight.org/ma/BostonL09/KOliver

4 weeks & 6 days until LTN Boston!

2009-09-11T11:55:00.000-04:00

Just 5 weeks from today the Light the Night Boston Walk 2009 will be a memory - and planning for the 2010 walk will be underway I'm sure. I received an email update from the local chapter regarding the Boston walk and so far we are 21% of the way to the goal of $498,655. Already local teams have raised over $100,000 - pretty amazing when you think about what just one local chapter can do. The email also included a link to a YouTube video about the Light the Night Walk - I recommend watching it if you have a few minutes.

Team Suzie has raised over $1000! I plan to resend the request for donations over the weekend to see if we can reach the team goal of $2000. Our team is holding strong at 6 confirmed walkers, including myself and my folks. I am getting very excited for their upcoming visit and have activities planned already. I can't wait to see them! The other confirmed walkers I want to thank for their time and commitment are:

- Jenn - a relatively new friend with a huge heart
- Linette - a fellow Ridgefielder that I have been so lucky to get to know over the last year and call my friend - she has raised over $120 so far! Her personal goal is $250.
- Michele - a friend from my UConn days and someone with whom I have reconnected over the last year

Two other walkers may be joining as well - Chris is the local representative for the Be the Match / National Marrow Donor Program organization. I have gotten to know Chris and his wife Meg through volunteering at area drives. Chris was also fundamental in helping me get the Ridgefield drive coordinated. If they don't have a donor drive that night, they are also planning to walk.

As I go through the day to day and see everything that I have on my plate, sometimes I think to myself that maybe I should wind down a bit, step back from all these efforts. And then something will jar me back and make me realize I do these things because I want to help and because I can. Today it is the anniversary of 9/11 that reminds me how blessed I am in this life.

Despite the challenges my family has faced over the last 3 years and the trials I have seen my mom overcome, we are a strong family with a lot of faith and love in each other. And at the end of the day, its what it is all about. Its the people in your lives that create its texture, and even though these three years have been the most difficult in my life, I do my best to not lose sight of what is truly of value for me.

NEW DATE: Ice Cream Get Together

2009-09-09T16:53:00.000-04:00

My folks will be in town in October and we plan to trek out to Harvard - I've decided to update the date for the Ice Cream Get Together to Saturday, October 17th at 5pm - weather permitting. Additional details are found in the original post (now updated to reflect the new date).

Nearing $1K in donations!

2009-09-07T18:29:00.001-04:00

As of today, Team Suzie and its team members have raised over $900 - next stop - $1K! And kudos to Linette for raising over $100 for posting a sign on her office door - thanks much! Since the donations were not made using the online address, the team total page won't be updated until the checks are turned into the L&LS. If you'd like to make a donation, please visit our team home page.

This upcoming Sunday is also the appreciation ice cream at Kimball Farms in Westford, MA. Details about the event are in the earlier blog post. Its a great place - lots of fun for families! Team members, donors and supporters are welcome - hope to see you there! :o)

A Match! Maybe ...

2009-09-04T10:42:00.001-04:00

The Be the Match drive at my church in Ridgefield was 12 weeks ago tomorrow - this summer has gone by way too fast! So much preparation went into the drive, from working with the church starting in early February to recruiting volunteers and potential matches. Though, I must admit, I have some of the best friends ever and it really wasn't all that difficult to get the people there to help out and sign up. The drive was to honor my mom in her courageous battle with cancer - she is now 2 years post transplant - and to honor her donor Bruce, a man that she now speaks with on a regular basis.

If you recall, my Mom was supposed to be at the event but suffered a severe pulmonary event just a few weeks prior and the family was called to TN. I know she missed seeing everyone but she needed the time to recuperate. And (knock on wood) her health seems to be holding steady for the time being. At the time, it just seemed to be too much to pull off - my emotions were all over the place. I was wanting so much to be in TN with my mom & dad, but this drive was a commitment I promised to see through.

Let me tell you - I'm so glad I did! I just found out the other day that one of the people who joined the Registry that day is a potential match for a 61 year old man! I'm sure, though, in this individual's mind there is some fear and trepidation about what may be yet to come - it will be approximately up to 8 weeks after additional testing to see if there is a match and whether they will go forward.

What I can tell you is what the potential recipient's family may be feeling - an amazing sense of relief and gratitude to a person they have never met. You see, when a patient reaches this point of needing a transplant, it usually means that there aren't many more options. And this family and group of supporters is hoping against hope - or praying as in our case - that the testing shows that you can go forward with the transplant.

By no means is the transplant an easy process for the patient, in my mom's case she had to endure a week of intense chemo prior to tranpslant and then remain in the hospital for several more weeks. To think about the process - that a person's immune system is essentially killed off and then reborn with the donor's marrow - it still amazes me just to think about it. But the transplant my mom received has allowed her to continue her fight - a belief we had confirmed with my mom's most recent visit to MD Anderson.

And that's all I wanted from this drive - to find one potential match to give one family the hope that they need in such a difficult time. And we did! So my thanks again to all who helped out and those who stopped by to sign up - your efforts are so greatly appreciated - more than you probably know.

And the winner of the Sox tix is ...

2009-09-02T15:30:00.002-04:00

... Jeanne Cappella!

This is how all of the drama unfolded

... all donor names were written down ...

... and then all names were entered into the Lucky Red Sox Hat ...

... and Jeanne's name was pulled!

Its fitting, too, for a few reasons:

- I originally signed up for the Maine Half Marathon - Jeanne was meant to be my TNT mentor

- When Jeanne was raising funds for her Marathon, she did more events and activities than I have ever seen! I actually got this idea from her!

Here is a link to Jeanne's blog. Have fun at the game- enjoy a Fenway Frank for me! :o)

One Day Remains!!

2009-08-31T19:52:00.000-04:00

Team Suzie has raised $780 thus far and 10 people are eligible for the Sox tix drawing! All donors who contribute between now and tomorrow at midnight are entered into the contest. All team members can be found at our Team Suzie page for Light the Night.

Results of the drawing will be posted on Wednesday the 2nd. Good luck! :o)

Update from M&D's trip to MD Anderson

2009-08-27T22:25:00.003-04:00

I figured the easiest thing to do is to copy from the blog my dad maintains:

Today we received a mixture of disappointing and good news from M D Anderson:

There is no sign of the donor's cells in Suzie's bone marrow and the number of cancer cells continues to increase. %$@&^%@.....

Revlimid is helping us manage this disease.

Signs of rejection continue and our transplant doctor is of the opinion that some of the graft is still active. He hasn't given up hope that Suzie might experience a rebound.

Suzie's alive thanks to the transplant and we've enjoyed many moments together that would have never happened were it not for the donor's act of kindness.

I will never be able to repay Bruce for this time we've gotten - I can only continue to hope and pray that we get more time together. I am truly blessed in this life with my family.

Did Someone Say Ice Cream?!?

2009-08-27T15:35:00.004-04:00

The team has now grown to 7 people - two new people - Jenn & Linette - signed up to walk this week. Thanks guys & welcome!

Our team has raised $755 so far for the Leukemia & Lymphoma Society! With the walk still 7 weeks away, I think we'll be in good shape!

As a thank you to the team, I would like to have an ice cream get together at Kimball Farm in Westford, MA. Why ice cream? Well, to know my family is to know that we LOVE our ice cream! I remember Kimballs from the late 70s when we lived in Harvard. It was a HUGE treat for us and the Bunch family to head over to Kimballs and wait in line for our scrumptious desserts. We'd then sit on the sidewalk or parking bumpers to eat our treats. Over the years we've been known to count ice cream as dinner for several of our nights out on vacation and we would always have 3 or 4 flavors in the freezer. Ahh those were the days ...

Weather permitting, on Saturday, October 17th at 5pm I'd like to invite all team members, donors and friends to meet me at Kimballs! Over the years, Kimballs has grown and now includes a driving range, a putt putt course, a general store and more!

Please respond to this post to let me know if you'll be in attendance - I'll also have an invite up for the Team Suzie group on Facebook so you can RSVP there as well.

Oh - and in case your wondering - Kimballs is where I developed my all time favorite ice cream concoction - peppermint stick ice cream with marshmallow, hot fudge and strawberries. :o)

Worry much?!?

2009-08-25T21:11:00.001-04:00

To say that I am a worrier is an understatement ... its a personality trait (?) that I would love to keep in check more often. I have been known to worry about some pretty kooky things ... but this one I needed to heed.

In the day and age of so much technology, apparently it is now not uncommon for counterfeiters to make dummy tickets for events - shocker, I know! And in my enthusiasm I had taken a snapshot of the raffle tickets and then posted them well, pretty much everywhere I could think of to hopefully promote donations and the cause. So long story short, I bought backups for the game.

I had these visions of the winner of the contest trying to enter the game only to be told that their tickets had already been scanned. And then what would they do?!? I know that a couple people who have donated would be coming quite a distance ... so tonight I bought backups and have a plan. I will meet the winner of the contest on the night of the game and make sure they get in. If they do, great! I'll have a friend with me and we'll go, too! Just a different section. If they don't get in for whatever reason, I'll hand them the other pair and buy my friend a drink or two ... or ten. These new tickets are also in the grandstands but on the other side of the park.

So am I a worrier? Umm ... yes. But I also truly appreciate the generosity of people donating and would feel awful if something funky happened with the tickets!

Two Years Ago Today ...

2009-08-24T07:29:00.002-04:00

... my mom received her bone marrow transplant. Happy 2nd Second Birthday mom!

SO many people were involved in this life saving event - my heartfelt thanks to:
- her doctors and nurses at Tennessee Cancer - had my mom's doctor not recognized the seriousness and unique nature of my mom's illness when he did, my mom wouldn't have been able to enter a clinical trial that then led to the transplant by a world class team.
- the case care worker at TN BCBS that worked with my parents through a very tough time and ensured that my mom had the health coverage she needed to move forward.
- the Be the Match organization (National Marrow Donor Program) that found not just one but three potential donors - ultimately testing and narrowing the list down to Bruce.
- the amazing doctors and nurses on my mom's Pod at MD Anderson Hospital in Houston, TX that cared for my mom before, during and the three months after her transplant, where daily trips to the hospital were a necessity to ensure that no her labs were acceptable.
- Bruce B. - the man who donated such an amazing gift that allowed my mom to continue her fight - I'm not sure that I could ever thank this man enough.

Of course, it goes without saying that the strength & courage of my mom and the care & love of my dad that we are all celebrating today. So thanks to both of you as well - much much love!

Time is Running Out for the Sox Tix Contest!

2009-08-21T14:44:00.004-04:00

If you make a donation toward the Light the Night walk for any member of Team Suzie between now & September 1st, you'll be eligible to win 2 tickets to the Sox / Angels game on 9/17! Its shaping up to be an important game - both teams are still in the running for the playoffs!

Just visit our TEAM SUZIE page and make a donation of $10 or more and you'll be entered! Winner to be drawn on September 2nd and will be notified of their win!

Condolences

2009-08-19T21:18:00.004-04:00

A close friend lost her dad today and I am again reminded of the precious nature of life. While she and I went to high school together, it has only been over the last year or so that we have truly gotten to know each other and become good friends. There are many reasons we are friends - she is a wonderfully kind and caring person. And she if loads of fun, has a great sense of humor, and has been a true friend.

We also shared the reality of a parent who is ill - in this past year, we have both faced times when we weren't sure our parent would make it through. She drove me to the airport when my mom was hospitalized in late May and I had to rush to TN. I recall telling her I wasn't ready - she told me that one would never be ready. She is right - I think that no matter how much you think you are ready, I am sure that nothing prepares you for that time and for that moment. My heart is hurting for her and for her family - and for her father who is no longer in pain.

Sounding good ...

2009-08-13T20:27:00.003-04:00

I just got off the phone with Mom & Dad - Mom is sore from the biopsy and a bit tired, but overall doing well. Their day did not go quite as planned - several delays led to a very long day, but when the time came to meet with the doctor, they learned that mom's blood work looks good. It appears that the Revlimid is keeping the cancer in check and her levels are holding strong - yay!

The doctor also confirmed our belief that the bone marrow transplant made a huge difference in my mom's health. The transplant allowed her to get to the point when trials started to include Revlimid as a potential treatment for myelofibrosis. So once again, my thanks to Bruce - the donor we have never met but who has made such a huge impact on our family!

Mom asked me to contact Chris - he is the Be the Match Recruitment Manager that I have worked with on past drives. She wanted him to know what a huge difference Bruce has made in her life. And it is with Chris's help that my mom and Bruce have been in contact and now have plans to meet. For some reason, we had thought that Mom needed to wait 2 years when in fact it is was just 1 year after transplant. So Chris stepped in and helped make the contact - and that has led to all good things! That was a fun call to make - and Chris and his wife Megan will meet my parents when they come to visit in October.

My parents will start heading home tomorrow, taking their time so that mom doesn't spend too much time in the car with a sore hip / side. They're planning to be back in TN on Sunday - I'm sure they'll be happy to get home!

M&D headed to TX

2009-08-10T07:55:00.004-04:00

My parents leave for Texas today - its almost 2 years since my mom had her bone marrow transplant. They'll travel through Elvis' birthplace (Tupelo, MS) on their way to MD Anderson on my Dad's birthday (today). Its a long drive, but is better for my mom's health - she is still susceptible to infections and traveling on a plane is just too risky right now. So they are off sometime this morning to a visit that will have my mom undergoing another bone marrow biopsy and visits with the doctors. We'll see what they have to say ...

Mom's 2nd Second Birthday is actually August 24th. So much has happened in those two years! Mom is holding her own, waging the most courageous battle I have ever witnessed another person fight. She remains so positive and I am very proud of how she has faced myelofibrosis. Mom also is now in contact with her bone marrow donor (one of my favorite people EVER!) and has plans to meet Bruce in the next few months. Bruce has been a blessing in my life even though I have never met him, because I have no doubt that it is through his amazing gift that my mom is still able to battle this disease.

My dad - what can you say about someone who has taken amazing care of my mom while also being the person that has been our stability? I am always amazed at my dad's strength. I am sure that there are days that he is tired or discouraged, but he works very hard to also remain positive. In talking about this upcoming trip, he remains hopeful that there is a new treatment or medication that will reverse the disease. Today is his birthday - so I am sending positive thoughts his way for his day and also for his drive from TN to MS.

In another month or so, my family will also pass another monumental mark of time. At the end of September / early October, it will be 3 years since my mom first went to the doctor and there were indications that this may be something serious. It has been 3 years of a lot of tears, frustration, anger ... all the typical responses you'd expect when someone you love falls ill. But I also think in those 3 years my family has become even closer - and we were a close family when this all began. I talk to my parents on almost a daily basis and my brother and I exchange frequent text messages and emails - about life, our folks, his family, and often times, sports. As difficult as this time has been, it has also been a blessing. I know without a doubt that I have a wonderful family, and for this I can only be thankful.

Team Suzie Light the Night Progress

2009-08-09T14:26:00.002-04:00

Wow - Team Suzie has raised $700 thus far, and the walk is still 2 months away! Our team is also at 4 (hopefully 5) members. Too cool!

If you want to help out by making a donation, here are the team members pages:
- - Me
- - Mom
- - Dad
- - Michele - my UConn roommate

Keep in mind that all donations of $10 or more between now and September 1st to any team member enters you into a drawing for tickets to the September 17th Red Sox game!

If you want to shop a little and give back at the same time, we are having an Anna Street Purse Party! If you are in the area of Portsmouth, NH on October 10th, c'mon by and design your own CUTE purse! Let me know so I can add you to the evite - refreshments and drinks will be served. If you want to check out what you can by online, please check out their site and place your order by October 1st! Let them know you found out about the event by including the comment 'For the fundraising party of Team Suzie - Light the Night' during checkout. The store generously donates 15% of the event proceeds to our efforts.

Thanks to all! :o)

Introducing 'A Cause For Hope'

2009-08-04T12:04:00.003-04:00

Since mentioning my intent to collect handcrafted items to resell them for the MPD Foundation, I have received several offers to donate pieces. I am so thrilled and grateful for the offers! To further publicize and formalize this project, I have set up a new web site and I am so excited to 'introduce' my new project on this blog - A Cause for Hope.

The intent with this site is to provide details on where we plan to be - currently the show we have scheduled is a SoWa show on October 18th. Since it is local, this will likely be where I spend most of my focus as far as selling items.

And my biggest supporter so far - my mom - will be there! It seems that each time I talk with her, my mom has made new items to sell for this event. Some of the items she has mentioned are holiday coasters and stockings. If you know my mom and have seen her work, you know her talents! As I receive donated items, I will be posting pictures on the web site to display the beautiful handiwork and to publicly acknowledge the generosity of the donors.

As an orphan disease, Myelofibrosis does not receive a lot of the focus of fundraising efforts of larger organizations. The incidence rate on this disease and the two others served by the MPD Foundation are so low. ALL of the funds donated to the MPD Foundation goes to research and many patients with Myeloproliferative Disorders participate in clinical trials in an effort to combat their illnesses.

It probably goes without saying, but I wanted to explain the name of the project. Since formulating this idea, I have had so many different thoughts on what to call this group and none seemed right. And then one day driving home from work 'A Cause for Hope' popped into my head. I looked up the URL and luckily it was available! So the CAUSE is the MPD Foundation and the HOPE is what patients and their families need when facing these little known diseases.

I have a favor to ask of those of you reading - if you are crafty and would like to donate an item, please contact me at lisafrank@acauseforhope.com. Also, if you can forward this on to those you know that are crafty, it would be greatly appreciated!

Anna Street Studio Party - October 10th!

2009-07-31T09:56:00.004-04:00

Some great friends & I are combining a fun girls night out with a trip (finally!) up to Portsmouth to see Nicole and a way to raise funds for the Leukemia & Lymphoma Society!

On Saturday, October 10th, we'll be holding a design your own handbag party at the Anna Street Studio store. I've seen these cute handbags and can't wait! The company also believes in giving back, so 15% of the total sales from the party will be donated to the Team Suzie effort for the Light the Night walk! Its also going to be a great way to visit with friends during the party and afterward when we hit the town for dinner and drinks!

You can also buy a bag online on their eStore and reference that you are purchasing to support Team Suzie, it will count as well! In the comment section, be sure to include: 'For the fundraising party of Team Suzie - Light the Night'. These purchases can be made through September 30th. If you can also let me know you bought something that would be great so I can keep track.

Red Sox Ticket Contest!

2009-07-27T10:16:00.009-04:00

So far my fundraising for Light the Night has gotten off to a great start! I've raised $400 so far ... but definitely want to raise more for the Leukemia & Lymphoma Society!

From now until September 1st, anyone who donates $10 or more to my fundraising efforts for Light the Night will be entered into a raffle to win 2 tickets to an upcoming Red Sox game:

Boston Red Sox vs. Los Angeles Angels of Anaheim
Thursday, September 17, 2009 at 7:10 pm
Section: 25

These are print at home tickets (see picture).

You can donate at: http://pages.lightthenight.org/ma/BostonL09/lfrank

GOOD LUCK!

Volunteer Spotlight Article

2009-07-27T09:48:00.008-04:00

I just received this email from my local NMDP coordinator and wanted to pass it on! This was the article from the Recruiter News, which goes out all over the country…not just to the NMDP, but all recruitment centers (Dana Farber, etc.). (And I have no idea why it has pasted in such a funky way!)
Volunteer Spotlight: Lisa Frank, NMDP Northeast District

Many families of transplant patients feel they’re going through a hurricane of sorts throughout the process. For Be The Match volunteer Lisa Frank, whose mother, Suzie, was diagnosed with myelofibrosis in 2006, that was literally the case.
Suzie was being treated at MD Anderson in Houston, and received her NMDP-facilitated transplant right in the middle of the notorious Texas hurricane season of 2007. The whirlwind wasn’t only meteorological.

After her mother’s diagnosis, Lisa, who lives in Boston, learned that she was actually unable to join the registry herself. Lisa’s desire to help fight her mother’s illness found a different outlet through fundraising and advocacy. Lisa became very active with the Leukemia and Lymphoma Society and Team in Training, and now as a Be The Match volunteer.

Lisa first connected with Chris Mulcahy, of NMDP Northeast District in December of 2008. Chris had posted a Boston area drive on a community Facebook page, and Lisa responded to his request for volunteers.

Chris recognized at that drive that Lisa had amazing energy and passion, and he asked if she would be interested in becoming an official Be The Match Volunteer Ambassador. After enthusiastically saying “yes”, Lisa and a friend attended training with Chris.

Since that time, she has helped at many drives, including hosting a Marrowthon drive in her hometown church in Connecticut. She also broadcasted links to Chris’ Marrowthon online drives through her extensive social network.

Chris comments that the relationship he has with Lisa would not have come about without his use of social media, and that he has developed a better understanding of volunteers and volunteering through his work with Lisa.

He noted that Lisa specifically asked for extensive training: not just about how to “do a drive”, but how to truly represent the mission, vision, and values of Be The Match. Quoting Lisa: “I want to KNOW as much as I can, so I can DO as much as I can.”

Volunteers represent an incredible resource to our organization. There are thousands of individuals out there who are willing to partner with us in our life-saving mission. Often, the first step is simply taking the time to ask!
To visit Lisa’s blog, where she talks about her volunteering, her mom, and life in general, visit: http://teamsuzietn.blogspot.com

First Official Walk Team Member!

2009-07-23T08:14:00.001-04:00

Michele has joined Team Suzie! My college roommate and someone I've reconnected with on Facebook over the last year has signed up for the October 15th event. Michele also knows my parents quite well, so it will be a bit of a reunion for them!

Check out our team page: http://pages.lightthenight.org/ma/BostonL09/TeamSuzie

First donation received!

2009-07-21T14:30:00.001-04:00

Many thanks to Cindy Jeanfreau - a dear friend of my brother David - who was the first person to donate toward the Light the Night event. With her donation, I am 5% of the way there - and I haven't even sent out the request for donations yet! :o)

Craft donations!

2009-07-20T07:58:00.003-04:00

Things are coming together for SoWa - so well in fact, that I have reserved a booth for October 18th! Its the same weekend that my folks will be here following the Light the Night event. I'm now tackling the logistics of getting ready - finding a tent, figuring out sales tax, etc.

One would think that securing the donations would be the tough part - not so far:

Through a roundabout way and the site LinkedIn, I have 'met' a woman who is donating some painted frames for the show. Her work is so cute! She is also living with bone marrow cancer, though a different form from my mom's.
My good friend's mom makes these adorable bags and has agreed to donate one for the show.
That same friend has offered to knit a scarf or two - though whether it will be a bacon scarf remains to be seen.
My mom is checking in with her Crafters group in TN for any possible donation.
I am picking up making jewelry again - will probably take a class to brush up on my skills.

This year I don't think that we'll raffle of a quilt - all goes well at the October show, one will be up for raffle through the entire season.

On another related note, I am going to be setting up a blog and web site directly related to this effort. I have a vision for this all that is still forming ... there are so many talented people out there that might be willing to donate items to help raise funds for cancer research. Check out etsy.com one day - you'd be surprised! So that site / blog will launch in the next 30 days or so.

I have gotten a few questions why crafts - when I think about my mom I think about how talented she is in so many ways as it relates to crafts. I can remember being in elementary / middle school and my mom would participate in Christmas fairs. We'd have dozens of Santas lined up on the dining room table and paper angels in the basement. Her talents have never ceased to amaze me - over the years she has made me and others curtains, stockings and quilts. She puts so much care into the items that she makes, and these gifts always remind me of her when I unwrap them for the season or see them over my windows.

Light the Night - - Team Suzie

2009-07-17T16:02:00.004-04:00

I have been a supporter of the Leukemia & Lymphoma Society since my mom received her diagnosis almost 3 years ago. This year, I've decided to form a team -- Team Suzie -- for the annual Light the Night Walk around Boston Common. On October 15th my teammates (yet to be recruited!) and I will walk the approximately 2-mile course to benefit this great organization.

The Light the Night walks happen all over the country at different times of the year. What makes this walk unique is that walkers who reach the $25 minimum carry illuminated balloons - white for survivors, red for supporters and gold in memory of loved ones lost to leukemia, lymphoma, myeloma or another blood cancer. I have heard it is beautiful - - and what will make it all the more special is that my mom & dad will be in Boston for the walk!

If you have been following this blog, you know that I had originally signed up to do the Portland Half Marathon in early October. The major concern there was that my mom would not be able to be in large crowds to participate or observe the event. What is so wonderful about Light the Night is that if she is not able to participate by walking a portion or all of the route, she can observe from one of several locations that surround the Boston Common. I've talked with my parents and both are comfortable with this compromise!

After the walk, my parents and I will have some much valued time together. We don't get to see each other one on one much since my move back to Boston, but we will in the days after the walk. We've already talked about heading out to Harvard, where my family lived in the late 70s! Whatever we do, it will be special in that we'll have some quality time to be together - - and I plan to beat my dad at Hand & Foot! Or mom plans to beat him ... one of us just needs to! :o)

SO - here's the deal:
- If you want to walk this event, it is on Thursday, October 15th. Registration begins at 5:30pm, ceremonies begin at 6:30pm and the walk starts at 7pm. The walk is followed up by an optional gathering! What's great about this event is that there is no fundraising minimum! That said, you do need to raise at least $25 to earn the t-shirt. So if you know my mom or know someone battling leukemia, lymphoma, myeloma or another blood cancer, I'd love for you to join the team: http://pages.lightthenight.org/ma/BostonL09/TeamSuzie

- If you want to donate, I am setting a goal for myself of $1000 for this event. You can do so by accessing this link: http://pages.lightthenight.org/ma/BostonL09/lfrank

As always, thanks to my wonderful family & friends for all of their support over the years! And in the famous words of Barry Manilow - Mom - This One's For You!! :o)

SoWa in 2010

2009-07-15T11:32:00.002-04:00

After giving myself a reality check, I realized that coordinating a table and all that it entails (which is a lot!) by the end of this SoWa season would just do myself and my cause a disservice. I really want to make a strong showing with donated items to sell and potentially an item to raffle. Between my job, my current commitments, and the things I keep signing myself up for (more on that later ...), I just don't think it is possible.

That said, I do plan to book a table in the Spring. Between now and then, I have lots to do!

Buy a tent
Ask friends & family for donations of handcrafted items to sell
Figure out the raffle item(s) - multiple if I do more than one weekend
Research if I can hold a raffle and not violate any city or state laws in doing so - you know, the whole gambling thing in a Puritan state ...

I am excited - I think this is a great venue! And I think that using existing venues and organizations to support my mom will be more effective than starting my own foundation at this time. That's not to say I may not in the future!

Table at SoWa for the MPD Foundation

2009-07-09T10:25:00.003-04:00

This weekend I'm heading with a friend to check out SoWa - its a local open market that is held Sundays from April to October. I've emailed with one of the people who manages the tables and a nonprofit can rent a table for only $25! Based on attendance, it could be perfect!

OK - so here is the idea - rather than run my own craft show, I am planning to have a table at an upcoming SoWa (probably in late September or October so I can get myself together) and hopefully raffle off a quilt or other craft item. I've sent the email to my mom to see what we might be able to raffle off ... and I'm hoping to have other things to sell to benefit the MPD Foundation.

So here's the deal - if you have an item that you have made (must be handmade) or a handmade item in good condition that you'd like to donate for sale, please let me know! Send me an email at lrf486@gmail.com and I'll start collecting items.

If this is successful, I might sign up next year to do a table a month and continually raise funds. As many of you know, my mom's disease of myelofibrosis is just so uncommon and not a lot is known. And what's fantastic about the organization is that 100% of funds raised goes to research! How great is that?!?

Home from TN

2009-07-05T15:55:00.002-04:00

Got home from TN yesterday afternoon and then went to a friend's for the 4th. It was fun, but I miss my family already! One of the first things I did this morning was look at my calendar, my remaining days off, and try to find a time to go back for a visit. I so wish that MA & TN were closer!

Overall the week was perfect - we couldn't have asked for a better time! There were 24 of us altogether - made for some crazy moments but since it was all family, it was a good time! We also had the most amazing weather. Usually this time of the year its quite hot and muggy, but we got mid 80s all week with low humidity. That allowed us to enjoy all that Tellico has to offer - all of us got out on the boat at one point or another. We also had a few cookouts and the 'guys' enjoyed a round of golf or two. Much success!

Mom & I talked a little bit about wanting to do something together - more discussions to follow but crafts will definitely be at the center of what we do! I saw her progress on a beautiful quilt she has been working on for some time - she is so talented. I can't even sew in a straight line! :)

At a loss

2009-06-19T15:30:00.003-04:00

I lost a friend today - someone I knew in high school and then as is often the case, lost touch with over the years. He was 'that friend' that could make you want to laugh, cry and smack him all at the same time. Even in high school, he seemed to have a great sense for who he was and who he wanted to be in life. I can still remember when I learned that Brian had ALS - I was with my high school girlfriends (as is often the case) and we were talking about people we knew. It was such a shock to learn that at 33 years old, he was diagnosed with this devastating disease. Through his CaringBridge site, lovingly kept updated by Brian and his wife Jameela, and through our interactions on Facebook I once again felt connected.

Brian passed away this morning on the same day that Lou Gehrig was born and I must admit that I am having a difficult time thinking of much else. Brian's passing was not unexpected - he had publicly been batting this disease for over two years. But to learn that someone I knew, someone that I am older than in years, and someone who leaves behind a loving wife and two small children is gone, it just truly leaves me at a loss. He will be missed and it is my hope that if I one day receive a tough diagnosis, I can face it the way that Brian did and the way that my mom has faced her disease - with grace, strength, selflessness and courage.

Put me in bubble wrap … please …

2009-06-15T12:19:00.000-04:00

So I am going to visit my parents in 12 days … and so are my brother and his family, my aunt & uncle, and my cousins and their families. I’m so excited! It has been a long time since I’ve had a week off and I always have fun when I’m in TN. And being with the extended family is going to be so much fun!

But, because of the fragile state of my mom’s immune system, we have all been told that we need to be healthy in order to make the trip. If we’re sick, we don’t go – no exceptions. It doesn’t matter which family member it is that is sick – the whole family needs to stay home. The doctors and my parents aren’t being overprotective … it was likely a virus or bacteria that landed my mom in the hospital this last time. And the risk is not worth any of us getting her sick. In some respects, I’m a ‘family’ of 1, so that makes it a bit easier. But I’ve encountered more germs over the last few days than I care to know!

At the drive Saturday, I learned that Ridgefield has the highest incident rate of swine flu in the state of Connecticut. Great. I kept the hand sanitizer in close reach the entire time! And now at work today it sounds like an ER floor … literally ALL around me people are coughing and hacking away. I keep shrinking lower and lower in my seat … as if that will help! I may relocate myself around the corner … need to talk to the boss.

I just want to be wrapped in bubble wrap for the next 12 days and then be shipped to see my parents … because at least that way I won’t get sick.

Success!

2009-06-14T08:07:00.002-04:00

We had the drive at my childhood church yesterday - success! In all, 19 people submitted their information to join the National Marrow Donor Registry. That is 19 people that may some day save a life ... or two!

Many thanks to all who submitted their information to join! I was also helped out by the First Congregational Church of Ridgefield - they set out a great spread of coffee, tea, bagels and cookies. Mrs. Wein, the church nurse (and mom of a high school classmate!) was my contact for the drive and a fantastic help. Of course, the volunteers that helped make the drive run: Marabeth, Jen, Dina, Karin, Kirstin, Cary, Jen & Kristen -- couldn't have done without all of you! THANKS for being such caring people and wonderful friends! And also Chris Mulcahy, the local representative for the Be the Match organization - he answered my text message questions while getting ready to be in a wedding! Talk about dedication!

If you weren't able to make the drive, you can still join online through June 22nd! To do so:

Visit: www.bethematch.org
Click on “join the registry”, then on “join now”!
To avoid the standard $52 fee you MUST use Suzie’s promo code: CM579

Obviously this is something I care a lot about - - sometimes I think I should dial it back, but if I do and miss that one person ... well, I don't want to think about that!

Thanks Kim!

2009-06-11T11:59:00.002-04:00

My friend Kim - a person I met at UConn and have reconnected with over the last year or so - let me know that she ordered her kit to become a Bone Marrow Donor. Thanks, Kim! You're the BEST! If you have signed up through the online drive, please let me know! I would love to keep a tally of how many people joined the Registry as a result of both the online drive and the drive on Saturday.

We made the Ridgefield Press!

2009-06-10T13:23:00.001-04:00

And it wasn't the Police Blotter! :o)

A bone marrow registry session will take place Saturday, June 13 from 10 to 2 at the First Congregational Church of Ridgefield, Lund Hall, 103 Main Street.

The event is in honor of Suzie Frank, who was diagnosed with myelofibrosis, a chronic malignant blood disorder in the fall of 2006. As a result of her disease, she underwent a bone marrow transplant in August of 2007. This gift, from an anonymous donor, has enabled her to continue her fight against myelofibrosis.

Ms. Frank found a matching donor, but 70% of patients will not receive the transplant that they need. “With this drive, we want to honor Suzie and her donor, Bruce, by raising awareness and recruiting more potential donors to the registry,” said a spokeman for Be the Match Registry.

To join, you only need to be between the ages of 18 and 60, be willing to donate to any patient in need and meet the health guidelines.

For information call 617-472-1109, or 1-800-MARROW-2, email cmulcah2@nmdp.org or visit BeTheMatch.org .

Be the Match Online Drive starts today!

2009-06-08T08:10:00.001-04:00

The drive in my hometown is this upcoming Saturday ... wow! We are also having an online drive to hopefully get donors to sign up:

Thousands of patients hope for a bone marrow donor who can make their life-saving transplant possible. They depend on people like you. You have the power to save a life. Take the first step today.

This online drive honors our Mom, Wife, Sister and friend, Suzie. Suzie was diagnosed with myelofibrosis, a chronic malignant blood disorder, in September of 2006. As a result of her disease, she underwent a bone marrow transplant in August of 2007. This amazing gift from an anonymous donor has enabled her to continue her fight against myelofibrosis.

Suzie found a matching donor, but 70% of patients will not receive the transplant that they need. With this drive, we want to honor Suzie and her donor, Bruce, by raising awareness and recruiting more potential donors to the Registry. Be the Match™ and give an amazing gift.

To sign up, visit: www.bethematch.org
Click on “join the registry”, then on “join now”!
To avoid the standard $52 fee you MUST use Suzie’s promo code: CM579

Thanks!

2009-06-02T14:38:00.004-04:00

I wanted to post a quick thanks to everyone who has asked after my mom, my family and I - this latest hospitalization was definitely difficult. But mom continues to amaze us with her strength and ability to come back from these bouts she has ... I have said this from the beginning, but I truly believe it has helped her so much to know that she has so much support. When you guys send a note or post on Facebook / the blog or call to see how she is, I let her know because I want her to know she has people out there rooting for her and praying for her every day.

Sometimes I question whether my updates are too frequent or not frequent enough, but I hope that they are just the right amount of information. You can sign up to follow the blog and see updates on your Blogger dashboard - this might need a gmail email - not sure though! Since both of us are on blogger.com, the same can be done for my parents' blog: nanisgreatadventure.blogspot.com.

I'm still looking into options to somehow link my mom's passion for quilting / crafts with a way to fundraise for those charities that have helped us out so much. More to come!!

Well ...

2009-05-28T12:16:00.002-04:00

My plans to do the TNT event in Maine have been put on hold for now. The main reason for the change is that I want to be able to do things that include my mom & dad ... and with this last flare-up with the COPD, we will need to be more careful than ever to keep mom away from crowds. As you can imagine, attending an event with tens of thousands of other people doesn't quite meet that criteria ...

I'm definitely open to ideas ... I would like to find something my mom & I (and anyone else who wishes) can do together to still raise funds for the causes that have made it possible for my mom to still be in the fight. Large crowds aren't an option, so I find myself coming back to an idea that has been percolating for a few months now. Anyone who knows my mom knows that she is an amazing crafter ... she has made several quilts that are just so beautiful. Perhaps one way I can honor her and work with her is to start / work with a foundation / organization / something that reflects her love of crafts. Does one exist?

If not, then my thoughts are to identify a charity or two as a recipient of funds raised - my initial thought is the American Cancer Society since it has a broad reach and also the MPD Foundation that is more targeted to my mom's disease. People have been so generous throughout the last (almost) three years, that I wouldn't imagine asking people for financial donations. Instead, if someone also enjoys a craft - whether it is quilting like my mom or some other hobby - and they would be willing to donate an item for auction, then that will be a way to raise funds for donation. Another related option is to start a craft fair that would charge people for tables and then that would raise the funds.

I don't know - my head is still spinning at the moment. I do think that this work is still so very important. But I want my mom to be a part of it as well.

We didn't need to be reminded ...

2009-05-22T22:40:00.002-04:00

Over the last couple of days, my family has been together while my mom is in the hospital once again. I got a call at work on Wednesday that completely caught me off guard. As my dad mentions in his blog, my mom has been doing really well since last Fall. So when he called to tell me that the doctors were admitting my mom - I thought she had a cold - and that they told him to get us to TN, I was just so shocked. Wednesday afternoon went by in a blur and I found myself on a flight through Atlanta to my parents in Knoxville. That morning I had been debating doing laundry that night or going for a walk with my friend Linette ... I never would have guessed by that night I'd be heading home.

When I made the decision to move back north, I really struggled with the thought of being further away from my parents even though my mom was still fighting the cancer. I spent a lot of time thinking through my options and making lists ... and then one day I realized that I had to make the decision that was right for me. And I just knew that it was to go back to Boston and find ways to make it work so that I could continue to see my family. It was tough and it was scary, but I knew it was where I wanted to live. And for the first year or so since I've been back up north, there have been no emergencies or last minute trips required. A few days here and there were tough, but I hadn't been called home. We have an understanding that if the doctors say we come home, we go to TN - Dave from GA, me from MA, and usually my aunt and uncle from IL. And this time, the doctor said we needed to be prepared.

And so we are all here ... and not quite sure what is around the corner. Yesterday was a very good day - today we had some difficult news. Mom is still fighting hard, but we just don't know. In some ways, I just want to scream and pitch a fit - we don't need to be reminded that my mom is ill. We have lived with this reality every day for the last 2+ years ... and my mom has fought against these diseases - Cancer and COPD - with so much grace and strength. But when I saw my parents a few weeks ago in MA when they came to visit, a big part of me started to relax and let my guard down a bit. But this week has brought the reality back to the forefront. And I can only continue to pray for my mom to have the strength to continue fighting and for my dad to be such an amazing caregiver.

Just had to share ...

2009-05-18T17:19:00.001-04:00

This is mom at the Relay for Life in GA ... love her in purple, don't you?

Join the Donor Registry

2009-05-15T17:48:00.004-04:00

If you know me or a member of my family, then you know that through the amazing generosity of a person we didn't know, my mom has been able to continue her fight against myelofibrosis. She underwent a bone marrow transplant in the Summer of 2007 using the marrow of an anonymous donor. Due to privacy reasons, a donor and a recipient cannot communicate until at least a year has passed since the transplant.

With the help of Chris Mulcahy, a New England employee of Be the Match, my mom and her donor learned each others' name - his is Bruce. Since then, they have exchanged emails and spoken by phone. They are even hoping to meet over this upcoming summer! While my mom did find a donor, 70% of patients will not receive the transplant that they need.

The gift that Bruce gave my mom cannot be measured. If I get to meet him, I am going to tell him just how much his gift has meant - it means more time with my mom for my family. And since I can't be a donor myself, I decided that setting up a drive to honor my mom and Bruce would be a good way to give back.

So on June 13th, my church growing up - the First Congregational Church of Ridgefield in Connecticut - will be allowing us to hold a bone marrow drive. My mom is coming up from TN and several childhood friends are helping out. The drive is coming up - only 4 weeks away! I'm really hopeful we get a good turnout.

In addition to this drive, Chris has also set up an online drive in an effort to reach additional potential donors. If you are interested in signing up and aren't able to make it to Ridgefield for the drive, from June 8 - 22, you can sign up online! Go to www.marrow.org and follow these steps:

- Click on “join the registry”,

- Then click on “join now”

- Enter the promo code 'CM579' so that you are not charged the processing fee

When you join the Registry, you may be called upon to help save a life. Please be sure you understand what to expect when you join the registry so you feel comfortable with your decision. Details about joining and the procedure can be found at www.marrow.org.

And I'm Back ...

2009-04-30T22:18:00.002-04:00

Yeah ... so I had planned to not continue with Team in Training events ... had being the key word in that sentence! I attended a dinner tonight with my friend from work to celebrate Team in Training and learn about the upcoming fall season. I went with every intention of not joining - and yet I have signed up for another event!

I spent the night driving home - in traffic at 9pm no less - asking myself why I signed up when I told myself when I wasn't going to participate in these events any longer, that I was going to focus on the MPD Foundation and the Be the Match Organization, that I was going to take some time off from volunteering and with all of that thinking I arrived at one answer - because I can.

In my lifetime, I have not had to face the fears my mom, several friends and countless others have faced when receiving a diagnosis of a blood cancer. I feel very grateful for this fact. I know that the time will come one day - maybe near and maybe far into the future - when I can't volunteer, but for now I can.

Over the course of the next few days, my site will be up and running - again! As far as I know it will be the same URL I had for the PF Chang's event - I'll let you know! And starting in early June I'll start training - this time as a runner. I will be planning to avoid as many staircases as possible between now & then! ;o)

End of Blog

2009-01-10T09:13:00.003-05:00

So ... now that I'm refocusing my efforts toward the National Marrow Donor Program and the MPD Foundation, I think it's time to 'close down' this blog. This blog is so focused on my efforts with Team in Training and I want to preserve the posts and what was written. So even though there will be no more posts, I'm keeping it active.

Thanks again for reading! If you are interested in still learning about my mom's progress, please follow their blog: http://nanisgreatadventure.blogspot.com/

Always,
Lisa

January 8 Update on Mom

2009-01-08T18:24:00.002-05:00

I received this from my father to post on my blog as well:

Greetings!!
We’re delighted to open this posting by saying that we had a FANTASTIC time in November and December celebrating birthdays and holidays with our children, grandchildren and good friends. Our only regret is that everyone who reads this entry was not there to celebrate with us!

Unfortunately, Suzie is encountering new road blocks: an upper respiratory infection that a z-pack was unable to conquer and a sudden, and significant, decrease in her red blood count.
The fear with the infection is that it will go into her lungs and further inhibit her ability to breathe. We are hoping that a weeks worth of Levaquin will resolve this issue. The fear with the decrease in her red blood count is that the decrease is permanent and that she will be dependent on blood transfusions because she will no longer be able to produce red blood cells on her own.
We are both praying that the Levaquin works and that the sudden decrease in red blood cells is a temporary phenomenon due to the upper respiratory infection and/or the recent introduction of new drugs to her system.
We will keep everyone posted, as change occurs, on our blog:
http://nanisgreatadventure.blogspot.com/
God Bless,
Mike

Tough decision ...

2008-12-30T14:46:00.002-05:00

So I finally had to admit to myself that I am just not going to be healed enough to walk the half marathon in under 3 weeks. I am still at the point with my ankle where after just 4 or 5 miles of walking at a fairly moderate pace (3.5 miles per hour) the ankle starts to swell and cause pain. For several days afterwards it hurts as well ... given that it gives out so quick, I have decided to not walk the half marathon. I have written the TNT staff to see if I can volunteer instead. If not, then I will still go see one of my best friends for a visit - it's been too long since I've seen Becca & her family!

It really was a tough decision for me - so many people have contributed to the cause to support my walk. Even though I know people don't feel as if I let them down, it still feels strange to have raised the money and not complete the walk. I also find myself thinking if my mom has survived so much during the last 2+ years since her diagnosis, surely I can walk 13.1 miles. In the end, though, I am not wanting to cause further damage to my ankle. This, of course, is the same ankle that has been hurt many many times - from an injury during volleyball practice to sledding (yes, sledding) and in general just being a bit klutzy I have probably sprained my ankle a dozen times and broken it once over the years. Several sprains ago I was told that next step would be a surgery to attempt to repair the ligaments ... the tumble down the stairs over the summer just did me in, I think.

In an earlier post, I alluded to finding out about a charity that supports my mom's disease more directly. The charity - the MPD Foundation - does not have anything like a sponsored walk. I'm still trying to think of ways to raise awareness and funds ... in the meantime, I'll keep this blog title. But I plan to change it and rearrange some links ... stay tuned!

And so many thanks to everyone who supported this walk - - it has been a tough year for many of us from a financial perspective. Please know how much your contributions are appreciated.

Volunteering at the Donor Drive

2008-12-14T19:33:00.002-05:00

Yesterday I spent about 3 hours in Brockton to help with a bone marrow donor drive. The drive is in honor of a 36 year-old corrections officer battling Acute Myelogenous Leukemia. While I was not able to stay the entire time, in the time I spent with the National Marrow Donor Program (NMDP) coordinator and his fiancee and the family of the patient, we signed up approximately 60 potential donors! The activity was primarily working with people and reviewing their applications to donate. It was easy and so rewarding!

In an interesting 'wow, it's a small world' kind of way, the patient's sister was in one of my sister-in-law's elementary school classes!

On another note, I'm planning to help out at an upcoming fundraiser for the same patient at the end of January. We'll be signing up donors. I'll be getting more details soon, so if you are in the South Shore area of MA, I strongly encourage you sto stop by! I also hope to be trained as an NMDP Ambassador so that I can help with even more drives. If you are interested in doing the same, go to www.marrow.org for more details.

Update on Mom's progress

2008-12-04T22:22:00.004-05:00

Not much to report on the training side - I'm training! Not much to report on the fundraising side - as a mentor I have made my minimum. Thanks to all who donated!

We do have news to report on mom - my parents posted the following just a few days ago:

We had a wonderful Thanksgiving! Lisa was with us for the entire week and David and his family were able to join us from Wednesday through Saturday. We were crowded but the visits were good and we're thankful that we had this opportunity to celebrate together.
In addition, we learned on the Friday after Thanksgiving that Blue Cross is approving the use of Revlimid for Suzie until November 2009. Given that the transplant failed, this renews our hope that we can manage the disease, not wait for it to run its course.
God Bless, and have an enjoyable Christmas and New Year!

The realization that the transplant has most likely failed has been difficult on everyone - - that said, mom is quite a fighter and I have faith that this new direction in her care will give us more time together and more memories to cherish.

I hope you all have nice holidays and enjoy time with those you love the most.

Change in Direction ...

2008-11-19T21:52:00.002-05:00

Recently my family found out about the Myeloproliferative Disorder Foundation or the MPD Foundation. Since my mom was first diagnosed in September '06 this is the first charity that we have found that lists her disease - myelofibrosis - as a key focus. They also focus on two other diseases - polycythemia vera and essential thrombocythemia. While also rare, the incidence rates for these two diseases are higher than myelofibrosis.

The MPD Foundation has raised over five million dollars for MPD research to date. They also have a Research Consortium that has conducted some promising research around myelofibrosis. Approximately 90% of the funds raised directly to research and patient advocacy. Through the Foundation, my mom has learned about other patients in her area that are also battling an MPD. She has been able to speak with individuals and may soon attend meetings.

One of the most frustrating aspects of this journey has been that the disease is so rare - the MPD Foundation estimates that there are only 40,000 myelofibrosis patients in the U.S. - that so much is unknown. As an orphan disease, the attention of the public and researchers is often focused on more prevalent diseases. While I can understand this on an intellectual level, it is difficult when it is your loved one fighting a disease with few treatments and little information on what to expect.

I am now nearing the end of my second event with Team in Training. I still believe in the cause, but I do plan to shift focus after I complete the half marathon in January. In 2009, my focus will be raising awareness and funds for the MPD Foundation and also the Marrow Foundation as my mom's second chance has come through the amazing gift of an unknown donor. More details to come! I'm not sure what I'll be doing or when, but I'll keep you all posted! I will also be changing up the blog once the event passes in January to reflect this new focus.

Thanks again for your well wishes and support ...

$37.00 & some change ...

2008-11-12T19:46:00.002-05:00

One TNT suggestion to raise funds is to place a change jar in strategic places - I chose the break room at my company - Bullhorn. I 'broke open' the container today - and found just over $37.00 in the jar! Interestingly enough, it was almost enough to bring the total for this event to $3,400 ... so I added the extra needed! And many thanks to whoever placed a $20 bill in the container! :o)

Donor List

2008-11-03T11:36:00.002-05:00

Thanks so much to everyone who has donated! You may have noticed that the list on the right side of this blog has changed. It was getting to be very long (yay – thanks!) and a bit difficult to read. So I removed the descriptive information as to how I know people, and will instead keep track of that in this post. I don’t think it will default to the top of the list, but I’m going to see if I can find a way to make it stay …

Many thanks to:

Stacy, Brian, Kelsie, Peyton & Cade Alcorn - friends from Ridgefield & GA
Joe & Grace Barbieri - friends from MA & GA
Jeff & Diana Belford - my maternal aunt & uncle
Angi, Rich, Vanessa & Timmy Budnick - my cousin's family
Bullhorn - company donation
Andrea, Sean & Kayli Callahan - friends from Ridgefield & GA
John, Donna & Kelly Cheevers - friends from MA
Michelle Coelho - friend & former colleague from PF / Clinsoft
Jaime, Lillian, Jimmy & Julia Cook - friend's family & former colleague from Perceptive
Phil Costa - boss as Bullhorn
Wim Cypers - friend & former boss from ArisGlobal
Kristine Dalessio - friend & former colleague from PF / Clinsoft
Sheila & Leroy Davis - family friends from Ridgefield
Michele DeSoto - friend & former roommate from UConn
Linette Decarie - friend from Ridgefield
Christie Differ - friend & former colleague from PF / Clinsoft
Mike & Suzie Frank - my parents
Cary Gemp - friend & former neighbor from Ridgefield
Laura Iverson - friend from MA
Kate Kobe - friend from Ridgefield
Vanny Kong - friend & colleague at Bullhorn
Becca, John & John Leshinski - friends from Ridgefield
Patricia Lindow - my paternal aunt
Jen, Mark & Jack Lynch - friends from Ridgefield
Dina MacDougall - friend from CT
Karen Maloney - friend & colleague at Bullhorn
Julie Paradiso - friend & former colleague from Clinsoft
Karin Ponte - friend from Ridgefield
Ben Russell - colleague at Bullhorn
Jim & Danielle Schley - coworker at Bullhorn and his wife
Tamir Sigal - friend & former colleague from ArisGlobal
Marie Tillson - friend & former colleague from ArisGlobal
Kay & Ed Van Den Ameele - family friends from Ridgefield
Renee & Randy Wickowski - friends from Georgia
Shari & Harold Willman - friends from Georgia
Debbie Jones Yetter - family friend from Ridgefield
Kristen & Leo Zerilli - friends from Ridgefield

Company donation

2008-11-03T11:25:00.003-05:00

I'm excited that my company - Bullhorn - has made a generous donation of $250 toward my walk! The company has also decided that they will sponsor each employee, when the employee requests a donation, up to that amount once in a calendar year. The individual does need to be actively involved in the charity, but I'm glad that my asking for a donation helped to lead to this decision! In addition to the financial donation, my colleagues who are aware of my mom's illness have been fantastic ... very supportive and willing to listen. It can be tough to open up, but I'm very rarely disappointed that I did.

I'm also excited because this Saturday I head to Chicago to see family! I haven't seen a lot of my family on my mom's side in over a year ... Angi, Kristen & Val when they came out to San Fran, and my aunt and uncle, and my cousin's spouses and kids in a long time! My parents are also driving from TN to IL to spend time - it will be a lot of fun! :o) I'm also looking forward to 'Girls' Day Out' when we are heading into the city to see Wicked. Can't wait!

Broke 3k for PF Chang's!

2008-10-28T15:48:00.001-04:00

I'm excited to report that with a donation today from John, Donna & Kelly Cheevers, I have now raised over $3,000 for the PF Chang's Half Marathon ~ and, for both events combined, I have now raised $7,500! I'm very excited to have raised for such an important cause and in such a tough economy! Thank you to all the people who have donated and who have encouraged me along the way! :o)

One year to the day!

2008-10-21T14:17:00.001-04:00

It’s so hard to believe, but a year ago today – right about now in fact – I was finishing up walking the half marathon in San Francisco! It was a challenge, but along the way I thought of my mom and everything she had been going through and thought of others battling blood cancer. As I was walking through Golden Gate Park and nearing the finish line, I started to have the hip pain that had ultimately forced me to change from the full to the half marathon. For extra encouragement, I called my mom when I had about ½ mile to go … needless to say it was a very emotional call! We both cried a bit for all that she had been through and for the emotion of my day. The weekend itself was even more special as my cousins from Illinois – Angi, Kristen & Valerie – flew out to San Francisco to visit and cheer me on! It was the first time the 4 of us had been away together and it was a blast!

I’m happy to report that I am moving forward with PF Chang’s in Arizona as planned. I have been having some high blood pressure issues, but the numbers are steadily improving and I will be back to full training my mid-November! I’m also excited because I booked my tickets today – I’ll be able to spend 2 days with Becca & her family prior to the event – yay! I am now at $2,862.50 – yeah! Less than $1,000.00 to go until I reach the minimum for PF Chang’s and almost 60% of the way to $5,000.00!

The Power of Your Donation

2008-10-14T15:08:00.002-04:00

We received some updated information from the Leukemia & Lymphoma Society:

$25 pays for a patient's chemotherapy prescription co-pay
$50 registers a person to become a bone marrow donor
$75 pays for bone marrow typing for a potential donor
$100 covers a patient's travel cost to a cancer treatment center
$500 provides patient aid through the Society for one year
$1000 will help fund a researcher who will help LLS find a cure

Thanks everyone so much for helping this cause! :o)

Fundraising Milestones!!

2008-10-13T12:02:00.004-04:00

I hit a really cool fundraising milestone today ... I surpassed the halfway point to my own personal fundraising goal for this walk. I am now at $2,537.50!! My personal goal for this walk is $5,000.00. Even in these tough economic times, I am amazed and humbled by the generosity of others. I also have now raised $7,000.00 for the Leukemia & Lymphoma Society between my event last fall (almost a year ago!) and this event. Yay!! A friend suggested a 50 / 50 raffle ... I may try it! You never know, right?

I sent out a second round of donation requests over the weekend. I figure if I can't be out there training, I can at least be working on my fundraising goals! I am still experiencing some symptoms from the sinus infection, so I'll take it day by day as far as training. The miles are getting up there now - this week I am supposed to walk a total of 17 miles. Not sure if I'll make it, but I'll sure try! :o)

Out of Commission

2008-10-09T10:43:00.002-04:00

Well ... I had strayed from my training with Dave in town over this past weekend. We had a great time attending both Red Sox home games in the ALDS against the Angels. Go Sox!

The entire time I had been battling what I thought was a cold. I actually have a sinus infection and bronchitis ... needless to say I'll be laying low for a time until I can kick this sickness!

Since I'll be home this weekend instead of in Baltimore visiting Kristan (boo!) I plan to send out follow-up emails for my fundraising. It's an odd feeling with all of this terrible news from Wall St. these days, but I'll make up the difference if needed.

Important day in MA

2008-09-29T15:50:00.000-04:00

I want to mention that one of the people I am walking to honor - Renee - is undergoing a bone marrow transplant at Massachusetts General Hospital today. She is receiving her donation from her brother Al, so both are at the hospital right now. Please send positive thoughts to Renee, Al and their family & friends as she undergoes treatment for multiple forms of leukemia.

2 years

2008-09-29T13:55:00.003-04:00

Some days are definitely easier than others … this entry isn’t about my training at all, but about the fact that cancer really sucks. We don’t know much more than we did a few weeks ago other than that the blood test results and my mom’s GVHD seem to indicate that perhaps the donor marrow is fighting back. That is what we all hope and pray for every day.

Today is tough on a few levels … it’s another blood test and I’m anxiously awaiting the phone to ring with results. Every time they go in to the doctor I feel a pit in my stomach. On these days it’s a little more of a challenge to put a smile on and act like there isn’t this huge thing going on in our lives.

It’s tough today, too, because 2 years ago today preparing for a weekend trip out to Rochester, MN to see one of my closest friends and her family. At the time I left, I knew my mom was going in to her regular doctor because of the pain she was experiencing in her stomach. All the time I was packing and ultimately traveling, my parents were going for an ultrasound and hearing news that would forever change their plans for retirement and all of our lives. It was the 30th and I was in the middle of the Department 56 Store at the Mall of America when I got the call that this was more than just a regular illness.

It would still be a few more months until my mom received the correct diagnosis, but this time 2 years ago was the beginning. It's so difficult to believe that much time has passed and I can’t imagine what it must be like for my mom and for my dad, her caretaker. We are in the waiting game again - Mom's JAK-2 tests aren't scheduled for another 4-6 weeks, so we still won't know for some time if the trend has started to reverse. It is so difficult to see someone you love go through pain and fight so hard. My mom is a fighter - she is a such a strong person and has already fought back against some really difficult trials. I try very hard not to be angry – I believe that you receive the energy that you put out there. So I try to remain as positive as I can … but as I said, some days it’s easier than others.

NOTE: Shortly after posting this, I got a call from Mom. Her test results show that her red blood cell count, hemoglobin and hematocrits are almost normal! This is encouraging news as these are the levels that we want to come up! Her white blood cell count about the same - the doctor would like to see it lower, but her platelets have come down which is another good thing! Keep sending those positive thoughts!

All done with PT!

2008-09-25T16:49:00.000-04:00

I had my last physical therapy appointment today – yay! I am very excited to have finished up … my PT is going to ask for a few more sessions as ‘just in case’ approved appointments. I have increased mileage coming up and we want to make sure that the ankle holds up! I have been keeping to the treadmill for now … in fact, I’ll be treadmill only with the exception of our Group Training Sessions on Saturdays.

This week I’ve walked 7 miles so far – I have another 2 miles to do tonight and then 4 on Saturday … I’ve also done a good job with increasing my water intake so I feel tons better when I’m done walking. Huh – maybe the experts are on to something!

I also had a really nice surprise this week – I received an unexpected donation from a coworker I have known only a short time. From what I can tell, there are no personal ties to Leukemia, Lymphoma or Myeloma, just a person that has fundraised before and knows how difficult it can be … it definitely made my day on Tuesday, though!

I’m still on the fence about the fundraising event – I’m not sure if it’s because it’s a big city, but the upfront costs are really high and many places have a food minimum. I haven’t heard back yet about the Celtics tickets … keep your fingers crossed! Having something like that to give away would make it much more enticing for people to show up!

If you have any ideas for good fundraisers, let me know! I’d love to hear them!

Re-motivation

2008-09-22T12:35:00.004-04:00

This past Saturday I met one of the walk team members that had not yet been able to make it to practice - turns out she is yet another source of inspiration for me. She and her husband are very active people and TNT alums - but two years ago she was diagnosed with Acute Lymphocytic Leukemia (ALL). Although she is in remission, she will continue to undergo treatment for another year. Though they ran the Disney full / half 5 years ago, she and her husband will walk the same event with their extended family. She and her family are quite the inspiration!

I started off this entry with that story because I have to admit, this time is more difficult for me than the Nike event. I honestly am not sure the reason -- there has been a lot of tough news recently and life has been hectic with all my recent changes. My mom is still the main reason I walk, but meeting people like this woman on Saturday also reminds me why it's so important to do all that I can ...

I've written before about Facebook - it has reconnected me with a lot of people and I am so grateful for that ... it has also reminded me, through those connections, how wonderful and how difficult it is to live life. In the three months I have been online, I know of 2 connections getting married, at least 1 birth and several others sharing wonderful news. On the flip side, each of us faces challenges and have either personally fought or have a loved one fighting a disease or encountering a tough time in life.

I wish that there was a charity that could cover it all, but there isn't. I am at the point in my fundraising where I need to re-ask people for donations. It's tough to do as each of us has that cause or that person on our minds and in our hearts. But doing what I can to help cure blood cancers like my mom's - that is my passion.

I had a wonderful conversation yesterday with one of those Facebook reconnections - someone I didn't really know in high school. We've both faced challenges and I mentioned a song from a few years back. Just prior to my mom's diagnosis almost two years ago now, I kept hearing 'Life Ain't Always Beautiful' by Gary Allan. I even commented to my mom & Sandi on Labor Day weekend 2006 - about 3 weeks prior to my mom's diagnosis - that I kept hearing this song and I felt like I was being prepared for something ... I think my mom's illness is it. Until you have a sick parent, it's difficult to explain what it feels like. Nothing in life prepares you for it, but maybe that song was a message somehow for me ... I love the lyrics, so I've pasted them below:

Life Ain't Always Beautiful - Gary Allan
Life ain't always beautiful
Sometimes it's just plain hard
Life can knock you down, it can break your heart

Life ain't always beautiful
You think you're on your way
And it's just a dead end road at the end of the day

But the struggles make you stronger
And the changes make you wise
And happiness has its own way of takin it's sweet time

CHORUS
No, life ain't always beautiful
Tears will fall sometimes
Life ain't always beautiful
But it's a beautiful ride

Life ain't always beautiful
Some days I miss your smile
I get tired of walkin all these lonely miles

And I wish for just one minute
I could see your pretty face
Guess I can dream, but life don't work that way

But the struggles make me stronger
And the changes make me wise
And happiness has its own way of takin it's sweet time

No, life ain't always beautiful
But I know I'll be fine
Hey, life ain't always beautiful
But it's a beautiful ride
What a beautiful ride

Ankle update ... breaking 2K! ... fundraising party?

2008-09-17T12:55:00.003-04:00

I had my follow-up this morning with the orthopedic clinic at Carney. I had quite a wait ... in fact, I think I counted all the ceiling tiles ... twice. That said, they did have 2 emergencies come in that I saw, so I watched Guiding Light and half of Rachael Ray in the waiting room.

The ankle looks pretty good! It's a bit swollen from walking ... I'm going to lay off on training for just a week. I noticed it earlier this week that it was just a bit tender. The other minor concern has to do with flexibility, so they gave me new exercises to do at home. I have just 2 PT appointments left and they think that will be enough. So then I'll be on my own! But I am still cleared to walk in January ... yay!

In other exciting news, I have now raised over $2,000 for this event! And the lucky donors are ... Kristen & Leo Zerilli! Sorry guys ... no prize! But ~ yay! Since I first started fundraising for the Nike Women's Marathon in 2007 I have now raised over $6,500 for the Leukemia & Lymphoma Society.

I am also targeting November 13th for a fundraising party here in Boston. I'm hoping (fingers crossed!) to get a ticket donation from the Boston Celtics that I can raffle off at the fundraising event. I'm just now in the process of finding a location and am thinking I may combine the fundraising party with the Pats on Thursday Night Football. I have several friends helping out (thanks guys!) and am planning to hit the Derby Street Shoppes this weekend for other raffle items. Wish me luck!

3-mile Group Training Walk

2008-09-13T12:14:00.003-04:00

I woke up this morning at 6:45 and wanted nothing more than to roll over and go back to sleep ... but whenever I feel like this on a training morning I think of my mom and others in the fight - whether it's cancer, ALS, MS or another disease. They don't get to 'roll over' and dream or wish that reality away. If they can face their disease every day, I can certainly get out of bed to go training.

Prior to walking today we had the 'injury prevention' session -- for those who know me know how important this session is for my training! The information was very helpful - hopefully it works! This morning's walk was only 3 miles and we ended up walking with a lot of the walkers on the Heart Walk. One thing I just love about being back in Boston is the activity - there were bikers, runners, walkers and families with strollers. And I've always loved watching the crew teams practice on the Charles. It was sunny - not expected as all forecasts called for clouds & rain, so I think a lot of people were out to enjoy the day!

Overall my ankle is holding up well - I am only 2 hours past the end of my walking, but so far so good! Believe it or not, my calves hurt more! I think the weeks of inactivity to all of a sudden start walking again - some of my muscles are a bit cranky. But they will work themselves out!

Another piece of exciting news - with Cary's donation I am now halfway to the fundraising minimum for PF Chang's! Yay! I'm still targeting 5k ... wish me luck!

Ankle Update

2008-09-11T14:40:00.001-04:00

I'm still going to the PT ... I had an appointment this afternoon during my lunch hour. Things are progressing along nicely! I have two more sessions left, and then I would imagine I'll be on my own ... that said, I did maybe push it just a bit. I 'jogged' for about 50 feet and could definitely tell last night. I just wanted to test it out ... see how it did ... now I know! I am still wearing my wrap and will continue to do so during all trainings and commute times.

Thankfully I'm still early on in my training, and my mileage is not super high. I've been cutting back the distance, but this Saturday plan to complete the full 3 miles in Cambridge near the Charles River. It's ramping up quickly, though! Starting next week I'll hit 4 on Saturday with total mileage of 13 for the week. Almost as much as I'll do on January 18th!

September is Leukemia, Lymphoma and Myeloma Awareness Month

2008-09-08T13:03:00.002-04:00

From the Leukemia & Lymphoma Society Blog:

September is Leukemia, Lymphoma and Myeloma Awareness Month

September is an important month for us at The Leukemia & Lymphoma Society (LLS). It is a special time when our ongoing collaboration with patients, caregivers and medical professionals is highlighted by our campaign for leukemia, lymphoma and myeloma awareness. Please join us in this campaign to educate more people about blood cancer.Here are some quick facts* you can share on your own websites, blogs, social networks or in conversations with friends.

Today more than 894,000 people in the United States are living with a type of blood cancer.

Today about 75 percent of children with acute leukemia and nearly 80 percent of children and adults with Hodgkin lymphoma are cured.

Every ten minutes someone dies from a blood cancer.

An estimated 52,910 people will die from a blood cancer this year.

Since LLS began in 1949, our organization has invested more than $600 million in research to find cures and better therapies.

This year alone, LLS will dedicate $71.4 million to research. Another thing you can do this month is help our Public Policy team work to get September officially recognized as Leukemia, Lymphoma and Myeloma Awareness Month by your state. How does this help? It ensures that there will be more media coverage around the month, which means more people will learn about blood cancers. It also means more people could support the fight to eradicate cancer.

Great visit!!

2008-09-08T09:56:00.004-04:00

It always amazes me how you can wait and wait for a visit and then when the time arrives, it goes by so fast!

My parents came in on Thursday night and I cooked us all dinner ... and we all survived! :o) The change in plans actually worked out well -- while they were in town, they not only got to spend the same amount of time with me, but they also got to see Cary & Karin, who they have known since they were 8 years old, and Kristen & Leo, who they have not seen since their wedding. Had we kept the original visit days, all 3 of my girlfriends would have been busy with work! So it worked out!

I did pretty well when my parents left yesterday ... I didn't cry until they turned the corner. I waited a minute or two for them to get ahead of me not wanting to 'see them' at a stoplight and have to say goodbye again. Wouldn't you know it, as I was waiting to turn out of my apartment complex who would I see but my parents! Apparently their German (aka Garmin) was not clear in her instructions, and sure enough, we were next to each other at the stoplight. That's okay - I got to wish them a safe trip once again!

Since my mom first got diagnosed almost 2 years ago, I have always been so proud of how both of my parents have handled a very difficult situation. As much as I would never wish cancer on any of my friends or their families, it has truly been a blessing and a privilege to see my dad take care of my mom in the way that he has ... thing is, if the roles were reversed, I know she'd care for him with the same love and kindness. I feel very lucky to have the parents that I have ... and I miss being able to hop in the car to go see them. But I also know that they want me to be back in Boston where I am very happy ... it just means more careful planning and use of my vacation days!

Slight change in plans ...

2008-09-03T11:32:00.002-04:00

Thanks to the potential of Hanna affecting New England on Saturday -- and potentially impacting ferry travel to the Vineyard -- my parents have a change in plans ... they'll be with me from tomorrow night (eek! need to clean!) through Sunday and will then head to the Vineyard.

Thankfully, my schedule was open on Friday and my boss & company had no problem with me shifting my days off. The good news is that with the change, they may get to see Kristen, Cary & Karin - probably not an option before due to their respective work schedules!

Training update ... Nani & Dee's road trip ... numbers soup

2008-09-02T11:39:00.003-04:00

I have a couple of updates after the long weekend!

I have started my training for the January event ... I am currently treadmill only but have successfully completed the 2 miles. The ankle is sore after the walks, but it seems to recover much more quickly now. Maybe this PT thing is paying off! I have another appointment on Thursday and am hoping to be able to train on pavement soon ...

My folks (Nani & Dee) are on their way! They are driving up from TN to New England to visit with friends and also see my new digs! They left Loudon this morning and after a stop at the doctor (more on that later) they are headed for an overnight stay in Virginia. Along the way up they will spend some time with the Van Den Ameeles - family friends from way back. This upcoming weekend they will be with friends from Plymouth on Martha's Vineyard. I'm not sure, but they may have left some necessities behind to make room for Dad's golf clubs ... just kidding, Dad! My parents will be with me from the evening of the 8th through the morning of the 11th - not sure exactly what we'll do during those days, but Mom has requested brunch at the Paramount on Charles Street -- I think I can do that! On the way back home, they are hoping to meet with other friends from Ridgefield ...

As far as numbers ... my mom went to the doctor this morning for blood work. There are mixed results - some results are improved from last week, other levels need to be more closely monitored. She'll go back in a few weeks for more tests ... with the 'big test' coming in a couple of months. One thing Mom mentioned is that her feet / ankles are getting a little stiff from the GVHD, so we'll probably keep the walking around Boston to a minimum.

Thanks again for your thoughts, prayers, kind words, etc. ... I pass them on to my parents who appreciate them all as well!

Over $1000 raised so far!

2008-08-29T14:06:00.003-04:00

I received another donation today that now has the total for PF Chang's at $1075! I've now broken the $1000 mark - yay! I am now 28% of the way to the minimum required and 21.5% of the way to my goal! So in the words of Bartles & Jaymes - thanks for your support! :o)

Additional update on Mom

2008-08-28T15:34:00.002-04:00

I am sure most of you read my parents' blog as well, but just in case I wanted to post the most recent news we have about my Mom.

Our transplant doctor has responded to our key questions:
"Tapering her prednisone/tacro will hopefully rescue at least some of her graft, provided it is done fairly quickly over the next 3-4 weeks. It would be important to repeat the donor/host blood and Jak-2 tests sometime in late October or November, and we could potentially doing so by having a blood sample shipped to us (i.e. she would not necessarily have to come). Hopefully that will show a reversal of the
trend.
Her prognosis is unclear at the moment and will ultimately depend on what happens in the next few weeks/months. That said, it is clearly significantly worse than it was just six months ago. Unfortunately, in view of her general condition, a second transplant is not a realistic option (i.e. too risky), but other treatment options can be discussed, and they would most likely be done locally."
This means that we have to let Suzie suffer GVHD to an even greater degree. This is hard because it leaves marks on her skin and it affects her vision and her joints. It hit so hard last April that she was unable to sew, or hold cards in her hands. Even eating was a challenge. If the GVHD gets too aggressive, her kidneys and liver are exposed to the degree that it could be life threatening. But doing nothing exposes her to the cancer, which is also life threatening.
Our prayers are that the donor cells make a comeback and that our doctors are able to control the negative aspects of GVHD.

Please continue to think and pray positive thoughts.

Still walking in January ...

2008-08-27T14:18:00.003-04:00

In my email I sent to everyone I had said I wasn't sure about AZ until we knew more ... we don't know as much as we'd like at this point, but my parents made a donation toward my walk. So when I asked my dad if that meant they still want me to walk, I got teased back. Go figure? :o)

So with their support I'm still planning to walk. I am sure that Team in Training will be understanding should anything need to change. And another thing ... with their donation I have now raised $950 - 25% of the way to the fundraising minimum!

News from TX

2008-08-26T00:21:00.003-04:00

It amazes me the turnaround in just one day -- when I wrote my last entry my family was each celebrating in his and her own way the one year anniversary of my mom's transplant. Yesterday (8/25) we learned some very difficult news. Despite early success with the bone marrow transplant, my mom's most recent test results indicate that the transplant may not have worked. I have posted my dad's blog entry:

Monday, August 25, 2008

The objective of the stem cell transplant is to replace Suzie’s bone marrow with healthy bone marrow contributed by the donor. This goal will be achieved when the donor’s pattern represents 100% of Suzie’s DNA.
When we left Houston last November, the donor’s pattern represented 97% of Suzie’s DNA and, needless to say, we were elated with her progress. But time and all that has happened since we left Houston have affected her negatively and it is beginning to look like the transplant may not work: the donor’s pattern on August 14th represented 5% of Suzie’s DNA and we continue seeing signs that the cancer is actively present in her body.
The good news is that GVHD remains active, meaning that the donor cells have not given up, and her red blood counts are high enough that at the present time she has no need for transfusions. At this moment we’re not sure what our status is or what to expect next. Our transplant doctor finds it difficult to offer a prognosis because Myelofibrosis is so rare and because so few people with this disease, especially in Suzie’s age group, have undergone the transplant. We’ve asked what our options are should the transplant fail but he hasn’t had time to respond to this question.
On another note, Suzie just had a most enjoyable weekend: she went boating with Mike on Saturday, attended church services and shared breakfast with good friends Sunday morning, then spent Sunday afternoon at the movies and at dinner with a different group of friends.

The upcoming weekend will be enjoyable because Dave, Kelly and the grandchildren are visiting and the pleasure will continue next week when we travel to Boston to visit Lisa and to Martha’s Vineyard to visit good friends from our days in Plymouth.

I think we're all in a bit of a state of shock -- for me there has been a lot of tears and frustration. My attempts to fall asleep tonight did not go well, and so I'm up now trying to maybe write through how I feel? I don't know ... I am just so thankful for good friends who have helped me today by listening. I'm trying very hard to be positive - I know that I have to remain hopeful and keep sending positive energy my mom's way. That said, right now my heart just hurts.

Happy 2nd 1st Birthday!!

2008-08-24T15:34:00.003-04:00

Today is one-year to the date since my mom received her bone marrow transplant - in some ways, it feels like it was just a few weeks ago and in others, like it has been a very long year. So - happy birthday Mom! And many many many thanks to the anonymous donor ... he will always be a special part of this family. I wonder if he knows today is the day ... I am sure he knows it was around this time, but I'll be spending special thoughts and prayers his way today!

Cute shoes!

2008-08-21T12:59:00.002-04:00

Woo-hoo! Just had my PT today and my ankle is healing really well! I'm excited - I can now start to wear flats with my ankle wrap. I'll still wear my sneakers during the commute, but during other times, I can wear cute shoes again!

Another piece of good news is that starting next week I can walk on the treadmill. The training plan for TNT calls for 2-mile walks, but Jennifer (my PT) is suggesting I cut that in half next week and see how it goes. It really feels good and she has done a wonderful job not just in the rehab but also explaining the injury and how to make it better ... if you need a PT and are in downtown Boston, let me know! She has been great!

Update on Mom - Aug 08 MD Anderson Visit

2008-08-19T10:13:00.003-04:00

Hi there,

As you may know, my dad also maintains a blog to update everyone on how my mom is doing: http://nanisgreatadventure.blogspot.com/

Since I'm not sure if everyone sees that blog, I wanted to copy and paste information from their last visit to TX. Some of the news was not what we expected, but we are all still very hopeful:

We visited M D Anderson Cancer Center in Houston on Thursday August 14th. We learned, if we are interpreting the data we have correctly, that the donor comprised 61% of total DNA in April 2008 versus 97% in November 2007. We are hopeful that this trend has now reversed but will not have the current picture for a few weeks. We will keep you posted! On the other front, Suzie’s WBC and Platelets are on the rise. This is, in part, due to the change in medications used to fight the GVHD which is now affecting Suzie’s skin, joints and vision. The plan now is to continue visiting our local Oncologist every other week and to return to M D Anderson in February 2009.

We are all very thankful for everyone's well wishes and support - it means a lot!

I'm a Mentor!

2008-08-15T15:32:00.002-04:00

I am so excited! I got a call earlier today from the MA TNT office asking if I'm still interested in being a mentor! The organization got a new walk coach for the 8 of us signed up to walk 13.1 miles in Portsmouth, Disney or Phoenix. The mentors they have used in the past have moved out of the area ... so, somewhat by default, I'm now a mentor for the team! Yay!

What this means is that I'll be providing support to the walk coach in organizing routes, contacting participants and answering questions that they might have. It will be a bigger investment of time, but coming from a group that had an awesome walk mentor, I know how important it is to have someone check in and help keep people motivated. I'm excited - and a bit nervous! This will be a great way for me to see if I have the skills to help lead a team for the Nike Marathon - an all Leukemia & Lymphoma Society event that often has 1000s of TNT participants from across the country.

Wish me luck! :o)

Initial fundraising email

2008-08-14T21:10:00.003-04:00

I must admit - this is the most difficult part of participating in these events. It's not that I don't think that people will support me - I know they will - they have in so many ways and so many times. I can't express enough how much it has meant - sometimes I feel like I say it to much, but it is humbling to get an unexpected card or a phone call to check in.

So I sent my initial fundraising email tonight - I'll paste a copy below. (Of course - I found a typo after I sent it ... isn't that always the way?) It is difficult to ask people to contribute - especially with the economy the way it is these days. I did want to copy in something my mentor sent last year title 'The Power of your Donation' to show how much each donation helps:

$500 provides a patient with leukemia, lymphoma, or myeloma with patient aid to support medical treatment and to travel to medical appointments for one year.
$200 provides a Family Support Program for one year.
$150 allows 5 patients to make a First Connection with a trained peer volunteer.
$100 provides 3 patients access to an informational teleconference.
$75 is the average cost of tissue typing to become a bone marrow donor.
$50 is the cost of a CT scan.
$25 covers a single prescription co-payment.
$5 is the cost of sending a newly diagnosed patient packet which includes information about their specific disease and support.

Please know that all support is appreciated - it truly means so much.

+-+-+-+-+-+-+-+-+-+-+-+-+-+

Dear Family & Friends,

As I write this letter, my parents are in Texas for another visit to my mom's oncologists at MD Anderson. It's hard to believe at times, but she has almost reached the 1-year mark since her bone marrow transplant. She is experiencing some symptoms of Graft vs. Host Disease (GVHD) but her spirits remain high. We all believe that the love, support and prayers of so many have helped her to remain positive as her fight against myelofibrosis continues.

In October 2007 I completed the Nike Women's Marathon in San Francisco with Team in Training (TNT). I walked the ½ marathon course and raised $4462.50 in support of the Leukemia & Lymphoma Society! The weekend was made even more special when my cousins came out to join me to cheer me on and lend support. Even though I was worn out at the end, I came away knowing that it would not be my last event with TNT - the cause is too close to home.

Just last week I signed up for the PF Chang's Rock N Roll Marathon in Phoenix on January 18, 2009. I had originally planned to run as much of the event as possible, but a recent ankle injury (yes – still a bit of a klutz at 35!) has me in physical therapy. I can still participate, but I just might be doing more walking than running! I am participating to continue to honor my mom, but also to support other people fighting blood cancers. I believe in this cause so strongly that eventually I hope to become a mentor for other participants here in Massachusetts.

I hope you can join me in supporting this cause by considering making a donation to my fundraising campaign. TNT is the Leukemia & Lymphoma Society's largest fundraising program - in the 20 years since it was formed over 360,000 individuals have participated and over $900 million has been. Another important fact is that 75% of the funds raised will go directly to patient support and research. The main Leukemia & Lymphoma Society site, the web site for fundraising and my training blog are listed below:

Leukemia & Lymphoma Society: http://www.lls.org

Donation site: http://pages.teamintraining.org/ma/pfchangs09/lfrank

Training blog: http://lfranktnt.blogspot.com/

I want to thank you in advance for your love and support – this is an exciting time as I prepare for the event in January!

Always,

Lisa Frank

Important day in TX

2008-08-14T08:41:00.002-04:00

Mom & Dad are back in Houston today for mom's 1-year post-transplant checkup. Sometimes it is so hard to believe that it's almost been a year since the transplant - her actual transplant day is August 24th.

They are probably on their way to their first appointment that will take a sample of mom's bone marrow to determine how much of her marrow is hers and how much is her donor's. So far the test results have been really positive so we are all very hopeful! It will be a couple of weeks until we know the outcome, but I know in the past this procedure has been uncomfortable for my mom so I hope that it goes smoothly. Afterward she'll meet with Dr. Anderlini (oncology) and Dr. Kim (opthamology) to monitor the progress of the Graft Vs. Host Disease. She's still having some symptoms in her feet, so hopefully they'll find the right balance of medication soon. If all goes well on this visit, they won't have to return for another 6 months!

At this point it's been almost 2 years since my mom's cancer journey began. It's hard to believe all that she has been through, all that my parents have endured and how much the rest of the family has witnessed. On days like today it's hard not to be reflective - I am so proud of my mom and her strength, courage and determination. And I'm so proud of my dad as he has been the constant pillar of strength throughout this time. I am also grateful for the blessings that we have received - an amazingly supportive family, wonderful friends, compassionate and brilliant doctors, and the anonymous donor from overseas who gave my mom a second chance. I somehow doubt he'll ever know how much his gift has truly meant to all of us.

Facebook / NMDP connection

2008-08-13T17:00:00.002-04:00

Wow ... another twist of fate! In an earlier post I was discussing the NMDP and how much I'd love to help out by volunteering at drives and such. Well, on Facebook I joined the national page for the NMDP. A local NMDP Donor Recruiter must have seen me on there and he sent me a 'friend' request on Facebook. (For those of you not on Facebook - it is a fun way to get back in touch with people but it's also quite addicting!) Anyway, through that link and subsequent emails I am now signed up as a potential volunteer! I'll post any experiences I have at those events on this site, too ... it still amazes me when you open up to people about experiences in your life how new doors open and new connections are made. Go figure ...

All Signed Up!

2008-08-09T11:14:00.004-04:00

I attended the information session for Team in Training this past week ... in one of the videos they showed, the run / walk coach from GA had a cameo! I hadn't realized what a key figure he is in TNT! Kind of neat ... a bit of a flashback. Probably the best part of the information session for me was that our honored hero had leukemia in 1991 and received a bone marrow transplant. 17 years, several marathons, and a bout of arthritis later he is still going strong! He will be the guest speaker at the kickoff next Saturday ... apparently he tells an amazing story. Can't wait!

I signed up for the Phoenix half marathon. I'll get to see Becca (yay!) and be in a warm place in January (yay!) and most importantly, continue to honor my mom and others fighting blood cancers. The minimum this time is $3800, but I've set a goal for myself to raise $5000. I think I can do it! :o) The fundraising web site is: http://pages.teamintraining.org/ma/pfchangs09/lfrank

I'll be updating this blog as I go ... check back often! :o)

Good News All Around! :o)

2008-08-07T11:14:00.004-04:00

First, I'll start off with the good news ... if you read this, you probably read the blog on my mom's health. That said, the biopsy yesterday actually turned out to be an impacted hernia in no way related to my mom's cancer. Yay! She still travels to TX next week for a check-up at MD Anderson and a bone marrow biopsy. We're hoping to have the results from those tests in early September.

In other good mom-related news, she received a letter back from her donor! With anonymous donors, both the donor and recipient must remain anonymous for the first two years. After that time, they can choose whether or not they will continue to communicate and let each other know who they are ... my mom had sent her donor a note several months ago. Last week, she got a letter back! We still know very little about him - we know he is from overseas and we think he may be a teacher - but he let my mom know how much he appreciated hearing from her, that he is grateful she is doing well and that he prays for her every day! What a nice surprise for my mom ...

I have been going to PT for almost 2 weeks now and have seen a huge improvement on my ankle! My range of motion is much, much better and I can start doing activity on a stationary bike this week. I also have my information session for Team in Training tonight after work. Pretty soon the fundraising site will be up and running and my training will begin! I do plan to bring the training plan to Jennifer (my PT) to make sure I don't set myself back. But I'm excited to get started!

It's a Small World

2008-07-30T20:33:00.003-04:00

In another twist of Facebook fate, my buddy and neighbor from growing up on Park Lane in Harvard, MA found me through my brother's posting. As it turns out, we live and work within 10-15 miles of each other! As we became reacquainted over email, turns out that Lee has been a bone marrow donor for her older brother when he was in college. Who would have thought that both our lives would have been affected in this way? Her brother continues to do well - I find her gift unbelievable. I have to say - the donor who gave to my mom and people like Lee are such amazing gifts in this world. I have been on the NMDP site (www.marrow.org) a lot recently. Even though I plan to do an event for Team in Training, I still would love to help out this amazing organization by volunteering at donor drives and such. Since I can't be a donor, this is one way that I can hopefully make a difference.

ALS Walk - October 4th

2008-07-30T20:23:00.002-04:00

I will say that one thing about getting older - it is difficult to see the people you have known in your life - family, close friends, friends you've lost touch with - go through something. Someone I was friends with all throughout high school is currently battling ALS. It's a young age to have ALS, but he continues to amaze those of us who are keeping him and his entire family in our prayers. Brian's family keeps a journal on CaringBridge - a fantastic site for people battling illnesses to communicate updates - and the strength and determination of Brian and his wife Jameela is just so inspirational. Something else that amazes me about Brian has been to Washington D.C. and also the capital of his state of South Carolina to raise awareness and funds for ALS research.

Through Facebook and other avenues, a rather large group of former RHS Tigers in the Boston area have been in touch over recent weeks / months. One of my friends is coordinating a team - Brian's Boston Blokes - to walk on October 4th in a local ALS fundraising walk. We'll be sending our funds to South Carolina in honor of all the work Brian and his wife have done ... it's a shorter walk - only 3.5 miles in Wakefield, MA - but it means a lot to me to be able to support a cause and a friend in this way.

Ankle Update - all good news!

2008-07-23T12:44:00.001-04:00

I went to the orthopedic clinic at Carney Hospital today in Dorchester (aka Dorchestah) to follow up on my sprain last Monday. Turns out I have a level 2 sprain in my ankle - none of the ligaments are torn (yay!) but they have been stretched. I will be going to PT 2x a week for about 6 weeks to rehab the ankle - I'm using the same PT one of my friends used for her knee.

I asked specifically about the TNT event in January and the doctor stated that I should be able to do it! I will have a slow start in the training, but the goal of the PT is to really build up the muscles in my ankle so that it isn't so prone to spraining. I'll have to take it as it comes, but I'm excited!

I also have a new contraption for my ankle - it's this hockey boot looking thing. It laces up and that allows me to keep tightening it as I can. It also fits in my sneaker, so that's good!

AZ it is!

2008-07-21T16:24:00.001-04:00

Becca just confirmed that they will be in Arizona at the time of the event, so I plan to sign up for that one - yay! I have to wait until I get the ok from the doctor to start strengthening the ankle, but I'm pretty excited! Becca is one of my closest friends from my high school days in CT.

No breaks - just bruised

2008-07-15T08:31:00.003-04:00

So I'm off my feet for a few days - working from home until Thursday. My friend Cary was a lifesaver - she picked me up at the hospital, brought me my prescription and some snacks and also took care of my car that was parked in a 'no overnight' lot. Thanks, Cary! You're the best!

On being a klutz ...

2008-07-14T09:36:00.003-04:00

They always say that the best laid plans ...

So I'm on my way to work this morning - in quite a good mood in fact! I had no problem getting a seat on the train - in fact, some rows were empty! I stopped by the little mart to pick up a Mega Millions ticket because - well - someone has to win! Unfortunately, I got in the way of myself ...

Walking from Summer Street over to Congress there is a set of stairs that you walk down. Somehow - as I was the 4th step from the bottom - I managed to fall. (I kept my drink and paper firmly in hand, though!) I am wearing heels today, of all days. I never wear heels! And I may have caught the edge of my heel or overstepped a step or just plain tripped - all I know is one minute I was happily on my way the next I had fallen. I scraped up my left elbow - same elbow I broke about 10 years ago. And I sprained my right ankle - again. This poor ankle has been sprained so many times. At the moment, my ankle is propped up on my garbage can at work and I've got some ice on it ...

Needless to say, I'm going to wait a few days to start my Jeff Galloway training ... :o(

A bit of a change this year ...

2008-07-13T17:52:00.003-04:00

This year I'm hoping to do this a little differently ... in my mind I keep thinking 'if my mom can come through chemo and a bone marrow transplant, surely I can try to run this ...' Thing is, it's a daunting thought! As much as I hate to admit it, I haven't been very good about getting in regular exercise. That said, I do think that I can run the half marathon - or at least, do a combination of run / walk.

Through my TNT training last year and conversations with friends, I learned about Jeff Galloway (www.jeffgalloway.com). His programs teach people across the US how to run and how to get into or back into running for fitness. Since the information meeting is still three weeks away and the TNT training likely won't start until late August or early September, I'm going to follow his conditioning program.

Wish me luck! :o)

Participating again!

2008-07-11T11:41:00.002-04:00

I am so excited to get started with my training for the next event! This is such a great cause and Team in Training is run so well - I can't even begin to say what an amazing experience the Nike Women's Marathon was for me! Of course, having my cousins out for the event definitely helped!

In the last 3 months a lot has changed - I sold my house in Georgia, relocated back to Massachusetts, and started a new job at Bullhorn. So far so good!

I had been planning to mentor one of the walks in January. The Massachusetts Chapter of TNT participates in the Walt Disney World Marathon January 10-11, 2009 and the P.F. Chang's Rock N Roll Marathon in Phoenix, AZ January 18, 2009. After talking at length with the team coordinator in MA, I have decided to walk another event with this new chapter prior to becoming a mentor. I have my eyes on the Nike Women's Marathon in San Fran again in 2009 for that!

I would love to go to AZ - I have to check with Becca to see if they'll be around! I have to say - going to Disney World will be a good alternative! I have my information meeting on August 8th and will decide then which event I will walk. I'll keep you posted!

Am I walking again?

2008-06-11T12:40:00.000-04:00

Well - the short answer to that is 'yes'!

As many of you may know, I have moved back to MA after over 4 years in GA. I love being back! I miss the family, but love being back in Boston.

I definitely plan to walk again - it was one of the best experiences of my life! I just don't know when yet ... I have put my name in to be a mentor on one of the upcoming TNT events here in MA. If that works out, then the event will be in January or February. If I don't end up being a mentor, I may walk one of those events or hold off until the Nike Marathon in 2009. With the move this year, I was concerned that it just might be too much going on in one year!

Thanks again to everyone who supported the walk in the fall! :)

Always,
Lisa

Mission Accomplished!

2007-10-24T14:41:00.001-04:00

I completed the 1/2 marathon in just over 4 hours - including two 15 minute stops for the facilities. Yay! It is so hard to believe it is over after months and months of preparation!

Some interesting information about the weekend:

There were 22,000+ runners / walkers in the race - the GA chapter sent 89 people
$18.5 million was raised by racers to directly benefit the Leukemia & Lymphoma Society
The GA chapter raised $410,000+
I raised $4462.50

Thanks again to everyone for all of your support! I'll post pictures soon!

Day 58 Update

2007-10-21T11:37:00.000-04:00

Here is the latest from my dad:

Sun 10/21/2007 11:37 AM
Suzie's appetite continues to increase and she is growing stronger every day. Her blood counts are improving/holding steady and we now visit the hospital only two days a week. Hoorah!
Our constant fear is graft versus host disease: acute usually strikes within the first 100 days, chronic usually starts in or after month three. We are praying that the rash she had early on was graft versus host and that we she does not aquire a strong case of this disease.
Unless there is a change in her condition we will wait to update everyone until day 72.
Thanks again for all of your prayers and support, all have made a difference!
God Bless you,
Mike

In 72 hours ...

2007-10-18T14:16:00.000-04:00

I'll be walking! :) Maybe - after my final training this morning I was still having some discomfort in my hips so I've decided to do the 1/2 marathon instead of the full marathon on Sunday. Sunday! Wow - that time went by so fast ...

Thanks to everyone who contributed - I raised $4462.50! And thanks to everyone who provided other means of support, including cards and calls. I appreciate it!

My mom is now on day 55 of her recovery - 45 more to go! She continues to do well and they are expected to return to TN shortly after Thanksgiving.

Donors Supporting My Walk

2007-10-15T10:44:00.000-04:00

I would like to express my greatest thanks to the people who have donated towards the walk on October 21st in San Francisco:

Joe & Grace Barbieri - friends - met Joe in Boston - GA
Diana & Jeff Belford - my aunt & uncle - my mom's sister - IL
Stanley & Diane Belsky - friends of the Belfords - AL
Christina Blimling - friend of Karin Ponte - MA
Ken Boland - colleague at ArisGlobal - CT
Lindsey Brandon - Owner of Linvites - GA
Prakash Buchireddy - colleague at ArisGlobal - India (!)
Angi & Rich Budnick - my cousin's family - IL
Kari Burgess - attended Sunday School class my parents led - VA
Andrea & Sean Callahan - family friends - FL
John & Donna Cheevers - friends - met John at PF - MA
Paul Cisternelli - friend - former boss at Domain / PF - MA
Jaime & Lillian Cook - friends - met Jaime at MedImmune - PA
Wim Cypers - my boss at ArisGlobal - Belgium (!)
Sheila & Leroy Davis - family friends - GA
Christy Dolin - friend - GA
Peter Donohue - colleague at ArisGlobal - CT
Dave & Kelly Frank - my brother & sister-in-law - GA
Mike & Suzie Frank - my parents - TN
Ron & Sandi Fritchley - family friends - TN
Cary Gemp - childhood & family friend - MA
Rachel & Steve Halpern - friends - met Rachel at Filene's - NJ
Susie Horadan - my dad's sister - MI
Laura Iverson - friend - MA
Debbie Jones - family friend - GA & MA
Becca & John Leshinski - high school & family friends - AZ
Patricia Lindow - my dad's sister - MI
Valerie & Kevin Lindquist - my cousin's family - IL
Jennifer & Mark Lynch - high school & family friends - CT
Andrea & Chris Moe - met both at Sage - GA
Marabeth & Joe Pereira - family friends - CT
Karin Ponte - childhood & family friend - MA
Michael Roberson - colleague at ArisGlobal - NC
Charlie & Alice Sicola - family friends - GA
Kristen & Rick Splitt - my cousin's family - IL
Pat Stites - colleague at ArisGlobal - CT
Marie Terio - colleague at ArisGlobal - CT
Len & Irene Tomasello - family friends - CT
Kay & Ed Van Den Ameele - family friends - CT
Ross Weintraub - met Ross at Domain Pharma - PA
Pam Weisbarth - friend & Sophie's 'Critter Sitter' - GA
Shari & Harold Willman - friends - met Shari at Sage - GA
Christina Wocosky - colleague at ArisGlobal - CA
Kristen & Leo Zerilli - high school & family friends - MA

Day 50!!!

2007-10-13T11:15:00.000-04:00

Today my mom is 1/2 way through the 100 days! Yay! Her day 50 also happens to be on a family friend's birthday - cool coincidence!

I also had my last GTS for the Nike Marathon - I made it the full 6 miles with no problem. At this point, I am going to start with the full marathon team and see how I do. Wish me luck!