The Bigelows Blog #4: Our Girl of the Year

Maeve NewHello MWOY candidates!

I was thinking of all of you today as I listened to the headline news.  Doesn’t it seem like there is so much bad news out there lately?  Maybe it’s just that bad news is able to get to us faster these days, but it sure seems like every time I listen to the news I get depressed and discouraged and quite sad.  It makes me wonder how my 3 daughters are going to live in a world where we aren’t shocked anymore when someone takes a gun or a knife to a school with the intention of hurting lots of people.  Or when it’s not surprising to have an Indystar alert on my phone showing a murder in Indianapolis practically every single day.

So, why was I thinking of you?  I was thinking of you because I was trying to cleanse my mind of all this bad stuff by thinking of something positive, wonderful, hopeful, selfless, generous and kind.   I thought of you.  Some of you have become connected to LLS through a loved one, but some of you have no personal connection to LLS.  Regardless of what has motivated you to run for MWOY, your commitment is all of these things, positive, wonderful, hopeful, selfless, generous and kind.  It is a huge time commitment, I would imagine it is stressful and a bit overwhelming to try to come up with ways to raise a lot of money.  I am in AWE of people like you.  People who give so much of themselves to others, and do so happily and voluntarily.

You know that I am connected to LLS because of Maeve’s diagnosis of Leukemia.  I know that Maeve is alive and thriving today because of the generous donations and funds raised for LLS.  My eyes still fill with tears when I hear a story about a child diagnosed with Leukemia years ago being a death sentence.  It was not that long ago that there was no hope for someone with Maeve’s diagnosis.  That thought makes me so thankful and hopeful for a future of even more advancements.  I have hope that one day in the near future, Leukemia and other blood cancers are 100% curable.  I also have hope that treatment is shorter and less toxic for these little bodies.

Thank you for giving of yourselves.  You are an inspiration to me and to everyone I tell about your campaign.  Thank you for being the “positive” in my thoughts.  Because of your generosity, you make this world a better place.  A place I want my daughters to live!

The Bigelows Blog #3: Our Girl of the Year

Maeve NewHello Candidates!

It is hard to believe we are passed the halfway point of the MWOY campaign!  It sounds like all of you have lots of plans in place for parties and different fundraising events coming up.  It’s getting pretty exciting!

This is going to be a brief blog this evening.  I was up last night with Maeve and her sister, Nuala, who were sick all night long and then all day today.   I’m pretty sure I now have enough laundry to keep me busy for the next several days.  And since I’m running on about 2 hours of sleep, I’m not sure I can keep my eyes open to type very long!

I mentioned before that Maeve finished her 2 ½ year treatment this past October.  Would you believe that this is the first time she has been sick since then?  It was very strange seeing her sick and it brought back a flood of memories and thoughts that I had not forgotten.  During treatment, there were certain days that because of the particular medication she was getting, she was expected to be sicker than others.  I would line her bed in waterproof pads at night to avoid multiple sheet changes.  I had this large blanket I would drape over the couch where she would lay  to protect it when she got sick.  Today as I was dragging the blanket out I remembered that it was a permanent fixture in our house for about 8 months.  It was a really big deal when I finally put it away, a major milestone.

During treatment she would be sick and I would immediately think, does she have a fever?  Will we be going to the hospital?  If so, will they be able to access her port?  If her counts were dangerously low, will she recover from this?  Do I need to call the on-call doctor?  During these months, I handled all of her wet diapers, soaked sheets and clothing with gloves so that I did not handle any of the chemo.  When Maeve called in the night for help, it was the kind of  call you would pop out of bed for, ready for anything.   She was admitted several times throughout treatment for dehydration, fevers, and once for vomiting blood and ulcers covering her mouth and throat so completely that she could not eat or drink.  It was absolutely terrifying most of the time.

So today I was calm and relaxed.  Even though the girls were sick, I knew that this virus would eventually run its course and that Maeve would not be admitted to the hospital.  I wasn’t planning to call her doctor because, let’s face it, I have seen much, much worse.  Maeve was as brave as ever today and although I knew she felt terrible she didn’t complain one bit.  One of the OT Therapists said to her, “Maeve, you are a tough little girl” and she said, “Yeah, and I’m a tough cookie too!!”

Have a great couple weeks, everybody!  Best of luck with all of your upcoming events.  More money means less toxicity and side effects for these kids!!

Zaki’s Blog #2: Our Boy of the Year

zaki tropical cropI’m SOOOO HAPPY!!!!!!

One thing that I really missed when I was going through my treatment was being able to play soccer.  Soccer is a big thing with me and my brothers.  In fact, we love soccer so much that we made Abbu give up his Colts season tickets so we could buy Indy Eleven tickets for the whole family!  I can’t wait to go with Abbu and my brothers this year to the home games.

When I was going through treatment, they wouldn’t let me play because of my port.  Sometimes I couldn’t event go watch my brothers play because of the weather or because there could be sick people around.  When I went to their games, I had to wear a mask.  At first, it was weird and it was always uncomfortable.  Then I got used to wearing the mask because I had to every time I went to a place where there where lots of people.  Getting off-treatment was great because now I can play soccer and go watch soccer without a mask!

There are many advantages of being the youngest child – mainly everyone thinks that I am in charge of my older siblings.  One disadvantage is that I have to use all their old stuff, like the soccer ball.  My parents keep telling me that my sister and both brothers used the ball as if that will make me feel better.

LLS made me SO happy because of two things this past weekend.  First, they gave me my very own soccer ball!  I told my brothers that it is way cooler looking than their ball.  I can’t wait to use it at my first practice after Spring Break!  Second, LLS introduced me to Jennifer Williams and Kirk.  Kirk was a real professional soccer player!  After the meeting, Kirk called his old coach who now coaches for the Columbus Crew.  Kirk arranged for me and my family to watch the Crew play!  Kirk also told us that a player on the Crew and the Indy Eleven are leukemia survivors, like me.

It makes me happy to know people like Kirk think enough about you that they want you to keep smiling.

The Bigelow’s Blog #2: Our Girl of the Year

Maeve NewHello candidates!  I hope you have all had a great couple of weeks.  Our family enjoyed St. Patrick’s Day, like always, despite the frigid temperatures.  We ended the day with a viewing of the Irish Dancers – they were awesome!  Maeve loves to dance and I think it got her thinking about the possibility of taking lessons some day…

This got me thinking about lots of things!  First of all, I was thinking about how grateful I was that Maeve was done with treatment and grateful that we were able to be out in public enjoying the festivities.  I always think about what we were doing “this time last year”.  The day after St. Patrick’s Day last year, Maeve had a clinic visit and we found out her counts were so low that we weren’t able to even leave the house for weeks.  Conveniently we also had a brand new baby (so we weren’t really out and about), but we were pretty stunned that counts were so low (since she was acting perfectly normal) and that they didn’t come up for so long.  It was scary and I certainly don’t miss those days of constant worry and isolation.

My second thought was, wow, it’s going to take A LOT of physical therapy to strengthen Maeve’s legs enough to dance like those Irish dancers!  This is on my mind a lot lately since I took Maeve for PT and OT consultations last week.  It was becoming apparent that she was a bit behind where she needed to be at her age with writing, coloring, and most physical things.  The consultations were quite eye opening.   Right away,  both therapists said she qualified for treatment and that we could plan on going weekly for at least the whole summer.  She was unable to do basic things like hop on one foot, skip, hold a pencil correctly or write her letters very well (even though she’s known them for years).

Although these aren’t what one would consider “a big deal”, I believe these delays are present because of her intensive treatment.  During those years she was not out running and playing and coloring and learning to cut with scissors, she was trying to survive Leukemia.  And we don’t know about other long term side effects that will occur due to all of the chemo and other drugs she took during this time.

Don’t get me wrong, we are so grateful for every single medication and treatment/procedure that has gotten our sweet girl to where she is today – healthy!  But, we thank each one of you for continuing your campaigns to raise more money for better treatments, more cures and less side effects!

 

Zaki’s Blog #1: Our Boy of the Year

Zaki5-cropHello everyone!  For the next few months, I am going to be telling you a little about myself.  Because I am only 5 years old and cannot type too well my parents will be helping me tell you my story.  I was diagnosed with Acute Lymphoblastic Leukemia (ALL) on Nov 14, 2010, two weeks before my second birthday.  I don’t remember that day very well but I do remember that for the next year and half Riley Hospital became a second home for me.  Medicine all the time and abbu (my dad) says that I was poked more with a needle in the 30 months of my treatment than he was                                       in 40 years (yup he is old).  I also didn’t like to eat many things.

My parents wouldn’t let me play soccer or go outside to play in the snow or even go outside without a mask on!  I can’t count high enough (because I can only count to 1000) how many times they said, “you can’t do this because the doctor said ….”.

But things have been different since last May.  I don’t have to take the medicines anymore.  My parents still freak out every-time I get sick.  Now I get to play soccer.  My dad and sister coached my first season in soccer last fall! I am starting to like the taste of more kinds of food – although my parents still want me to eat more than I want to and force me to eat things that I don’t like.

Thank you so much for helping children like me.  I don’t want other kids to have to stop playing soccer or get poked all the time with a needle or stop liking what they loved to eat.  Thank you so much.

The Bigelows Blog #1 : Our Girl of the Year

Image

Maeve NewWe have just spent another lovely evening with the amazing group of MWOY team and candidates.  And what an amazing group of candidates it is!  This is Kathleen, Maeve’s mom, writing on behalf of Maeve and our family.  We are honored to be a part of the campaign this year and feel so grateful to be able to help in any way.  This is a cause that is near and dear to us for obvious reasons.   If you would have told me 3 years ago that I was going to be personally involved with LLS and the MWOY campaign due to my daughter’s ALL diagnosis, I wouldn’t have believed it.  This is the kind of thing you hear about, not experience.  The kind of thing you read about and think, wow, that poor family.  When that family became us, our lives were changed forever.

I will never forget the day Maeve was diagnosed with Leukemia.  It is so fresh in my mind and goes down as one of those days you re-play over and over in your head.  I had felt two enlarged lymph nodes in the back of Maeve’s head while I was brushing her hair one day and immediately got a terrible feeling.  Over the next couple of weeks I had been on the phone with her doctor’s office and taken her in to be seen twice.    Even though I had this sinking feeling, I still made excuses for her behavior.  I kept telling myself that she wanted me to carry her all the time because she was jealous of her new baby sister.  And that she wouldn’t participate in her gymnastics class because she just wasn’t a very physical kid.  Looking back, there were many more signs that something was really wrong, but you aren’t supposed to jump to those conclusions.  What are the chances your child will be the one who is diagnosed with cancer at age 2?

I didn’t want to put Maeve through the agony of a blood draw.  Her doctor had thrown out several possible problems….anemia and mono to name a few.  I had Leukemia in the back of my mind, but I didn’t really consider it.  Up to that point, Maeve had been the healthiest child I knew.  She never had a single prescription and had basically never been sick.  We eventually did the blood work and when our pediatrician called with the initial results we were instructed to go directly to the Pediatric ER.  They got us right in and Brian met me, Maeve and our infant daughter, Nuala at the hospital.  Maeve looked so tiny and pale in that enormous hospital bed.  She almost seemed relieved to be there, as if finally she was going to get help.  When the ER physician came into the room to give us the rest of the blood work it was like an out of body experience.  All these words were flying around the room……blasts, hemoglobin, platelets, oncologist.  I was experiencing my nightmare and even yelled at the doctor to stop talking so these awful words would stop coming out of her mouth.  Within minutes, we met Maeve’s oncologist and were transferred to a room in the ICU since Maeve was too sick to be admitted to the regular oncology floor.  We later found out that her bone marrow was 98% leukemia cells.

The next 2 days were a blur of IV’s, blood draws, port placement, bone marrow biopsies, spinal taps, multiple medications, a special diet and of course, chemo.  The greatest piece of news we got after about 24 hours was that Maeve had Acute Lymphoblastic Leukemia (ALL) – otherwise known as the “good kind” of leukemia.  We knew that ALL had a very positive cure rate and we were relieved to get this diagnosis.  I still spent every night in the hospital crying in the hall or the bathroom so Maeve couldn’t hear me, knowing this was going to be an uphill battle and that my sweet 2 year old baby was going to go through so much pain and agony over the next 2 ½ years.  And to me, if the cure rate wasn’t 100%, I was still terrified.

Seeing Maeve run around with so much energy tonight at the Kickoff party brought mixed emotions.  On one hand, I wanted to see her quietly respecting the program and listening as the intros were made.  On the other hand I couldn’t help but think – THIS is your inspiration right here!  There were more times than not during Maeve’s treatment that we wished she could walk up the stairs or across the room or get up off the couch and act like a “normal” kid.  Seeing her running and jumping around makes me so happy and realize how far she has come.  To think that parents in our same situation not that long ago would have no choice but to lose their child to leukemia makes me so very sad and yet so very grateful.  I came across this astounding statistic recently on the LLS website:  “In 1964, the five-year survival rate for children with ALL was 3%.  Today it is approximately 90%”.   Saying we are thankful for your participation in the MWOY campaign is such an understatement!  There are way too many of us out there who have a personal connection to Leukemia or Lymphoma.  More money means more research and more hope for families like us.  Anyone who has helped a loved one get through treatment know that “hope”  is priceless.

Thank you from the bottom of our hearts for your dedication and your time commitment to the campaign.  Best of luck to all of you as you begin this journey.  We will be checking back in hopes that you can learn more about Maeve and her story.

Why We Train! Meet Kara and Team Heart and Sole

 

Meet Kara! Kara is a first time TNT participant.  She heard about Team In Training through a friend fundraising in Florida. Kara just recently lost her Grandma to Lymphoma, just 3 weeks after being diagnosed so was inspired by this new way to support LLS so she decided to put her new found love of running to use.  She is the Team Captain for Team Heart and Sole that will be running the Indianapolis Monumental Marathon!

Team Heart and Sole is made up of 9 ladies from all over the Lafayette, IN area.  “We are a group of 9 inspiring women who have the HEART and SOLE to help find a cure for cancer while also striving to reach our ultimate goal of completing the Indianapolis Monumental Half Marathon. Our SOLES may hurt after 13.1 miles, but our HEARTS will be full, knowing that we are helping others! We are not in this alone. We have GOD and the support of many on our journey! Thank you from the depths of our HEARTS and the SOLES of our feet! Philippians 4:13″

Team Heart and Sole had their first fundraising event that raised over $1,000.  They are not stopping there.  They are working with local candle maker and have a “Team Heart and Sole” candle that benefits LLS.

Join Kara, Team Heart and Sole and Team In Training to help us find a cure!  www.teamintraining.org/in

 

 

Heart and Sole

 

Name:  Team Heart and Sole                                                    Event:  Indianapolis Monumental Marathon                              First Year with TNT

Why We Train! Meet Alma

Meet Alma! She started with Team In Training to scratch something off her bucket list, to run a half marathon before she turned 45. She is now training for her seventh event – having completed 3 half marathons, 2 century rides and a triathlon with TNT so far.

Alma says, “I’ve met so many survivors that are a daily inspiration to me. I’ve met others who have lost loved ones and have such a determination to help find a cure so no one else has to go through that pain.”

Alma also thinks outside the box when it comes to fundraising. She will host a Zumba-thon, house and pet sit for donations and also have weekly drawings for prizes.

Join Alma and Team In Training and help us find a cure. www.teamintraining.org/in

almaTNTName:  Alma Shireman
Event: Nike Women’s Marathon, San Francisco
Years with TNT: 3 Years

Why We Train! Meet Jon

Meet Jon! He started his TNT journey in the Summer of 2000. He has been a run coach for TNT and this fall he will be running 26.2 miles at the Nike Women’s Marathon with Team Mickey in San Francisco, on October 20th! “My mom lost her battle to Multiple Myeloma in July 2002. The survival rate for this cancer is greatly improving because of the great research and treatments that are now available.”
Jon’s favorite thing about TNT are the people. “These people are so very special. Patients, Honored Heroes and participants are the most selfless people I know.”
Help us cross the finish line in finding a cure and make your miles matter with Team In Training!

Name : Jon Douglas
Event: Nike Women’s Marathon, San Francisco
Years with TNT: 13 Yearsjon

Why We Train! Meet Rob

Meet Rob! He has done numerous events and has found a love for cycling. “It is more enjoyable than running” he says. Rob and his wife, Dee have been involved with Team In Training for many years. This year, he was a coach for America’s Most Beautiful Bike Ride. He will be coaching our TNT Team for their 100 miles ride in Door County, WI on September 8th!

Rob says, “My favorite race I’ve done with Team In Training would probably be America’s Most Beautiful Bike Ride around Lake Tahoe. Beautiful scenery, fun terrain.”

Thinking about riding 100 miles to find a cure? We know the perfect place and people to train with! Find out more at http://www.teamintraining.org/in
robanddee

Name: Rob Annis
Event: Coach for Door County Century Ride
Years Coaching: 2 Years