"Coming Together"

Hello Everyone,



 Here's an update  on Nolan's progress this Month...


We are now 2 months out of treatment and doing very well. Still plugging away with all the physical therapy and making progress with food therapy. Nolan is actually eating baby food off of a spoon! This is huge.  He gets stronger with each passing day. Although, like any other toddler his age, he is prone to tantrums. Mostly because of his frustration with the inability to walk. He wants so badly to move on his own and frankly so do I. My back cant take lugging a 26 pounder everywhere he wants to go.

At the end of January, Nolan had a bit of a setback. Come to find out, the excess fluid from the shunt in his brain, built up in his intestines and the pressure caused a groin hernia. OUCH! This prompted immediate day surgery. No worries though! All went well and the little guy is back on track. This week we head back in to Boston for an MRI to make sure there is no rogue tumor left behind in his brain. We will be on edge until we receive the results of this one for sure. Next is a visit to meet with an oral surgeon that specializes in Gorlins patients. This is only a meet and greet as there shouldnt be any jaw cysts in Nolans mouth at this age, but its important to keep checking.

Its so wonderful to be home now but I also feel a bit restless. Because of Nolans impaired immune system we are unable to leave the house very often. If all goes well with the MRI it might be safe to start thinking about picking up a few hours back at work just to keep my sanity.

Ill be sure to keep you all posted .

Nicole Smith

Hello Team Nolie Followers!

I have some new fundraiser info. for you.  First off the fundraiser in Lowell a couple week's ago was a smash!  We all feel so very blessed by all of the support from this amazing community.  The success that we continue to have with Nolan's fundraisers could not be achieved with out you all!  With that said here is the info. for the next fundraiser:

October 10    Dance at The Barn in Amesbury, Ma.  the address is 5 Ring Street

 Benefit  dance at The Barn in Amesbury Oct.10 from 7-12:30 At the door tickets are on sale for $10.00. If you are unable to attend but would still like to make a donation you can go on to this web site and donate via pay pal or you can make a check payable to the Nolan M. Smith fund at the Provident bank and all banking info. is on the Nolie web site! Hope to see you all on Oct. 10   If you all have any questions please feel free to e-mail me.  We are still looking for a few more items to raffle.  If anyone could help out with this matter please e-mail me with that as well.  Thanks again everyone!

Jodie   

Hello all,

  The Golf Tournament that we had on the 19 of Sept. finished with smashing results.  We had 144 golfers over 30 voulenteers , georgeous weather and raised more for The Nolan Smith Fund than any of us could of ever imagined.  The team work it took to make this tournament successful was all worth it.  We met so many amazing , generous, thoughtful people that the simple word thank you doesn't seem to be enough to say at times.  We all feel truely blessed to be a part of such an amazing day.  To each and every one of you that helped plan, raise money, came to golf, flipped burgers, sold tickets, registered our golfers, sold our silent auction and raffle items, handed out utensils, took pictures, and helped clean up.. and all of the dozens of other jobs that took place that day we truely appreciate you all more than you will ever know!  All of your hard work led to the amazing success that the day really turned out to be.  We all love you!  BIG HUG!!  Stay tuned to our web site as all fundriser info. is posted here!

HERE IS THE LATEST NEWS ON NOLAN............

Nolan, Mike and Nicole are back at MGH.  Nolan is about to start the really aggressive phase of his chemotherapy treatments.  They were admitted today, he will be hydrated and chemo will begin tomorrow.  The treatment last for 3 days and it's going to be tough.  Lot's of new precautions taking place, different more intense meds, many more restrictions.. and thru it all one sweet little boy who is handeling this like a little champion.  Nolan is such a gift, a treasure really.  The chemo is working, the treatment is going very well and The Smith family is half way to the finish line.. keep sending those prayers folks!  These days ahead will be tough but we know they can do it!  Nic will be sending along a note from MGH soon and I will post it as soon as I get it. 

 From the bottom of our hearts we appreciate all of your warm thoughts and prayers. 

Jodie

 

 

So here we are September already.  This past 30 days has been a blur, planning so many amazing fundraisers.  Talking with so many people via- e-mail and phone about our little Nolan.  The highlight of my day remains with my daily phone calls and visits with Nicole when I can hear sweet little Nolan  talking up a storm.  My heart fills my chest.  You all have no idea what Mike and Nic and Nolan are dealing with on a daily basis.  The stress is unbelievable, the love is never ending and they truely are an amazing little family.  Here is a note from Nic wrapping up the past few weeks or so for little Nolan.  Please know that all of your warm thoughts and prayers mean more to the Smith Family than you will ever know.     Jodie

Hello all team Nolie fans, 
 

Here is just a little update on what Nolie has been up to this month...


This August marked the halfway point in Nolies cancer treatment. Three down now. Three to go. This round was particularly tough on the little guy , though. It takes longer for him to recover after each treatment he goes through which throws our schedule off by a few weeks. Usually the first few days at home are very stressfull for me because I need to give him his anti nausea meds around the clock and daily injections. No matter how bad he feels, Nolie is always the happiest boy and never complains about what he must endure. He is my hero. At this point I am beginning to think that i should have been a nurse with all that I have had to do for him. By the end of the first week we are back in the cancer clinic at Mass General for Blood transfusions and Platelets because the chemo has done its job and wiped out everything. (the bad and the good) Then we wait for some sort of infection to set in. It dosent matter how careful we are about keeping sanitary, another week stay at the hospital is inevitable. This time it was for a runaway cold sore. The doctors actually thought he had the chicken pox because lesions covered his whole face. So here we are a week later and on the mend. Nolan is well enough to have some interest in food but we know that another session is just around the corner. We ask that this week you keep Nolan in your prayers as it is time for his spinal tap and MRI scan . These tests will give us some clue as to how the chemo is affecting the tumors. We hope for some positive news to finally come our way. Meanwhile, we will continue to enjoy every moment we spend in the comfort of our own home ,where it goes without saying,that Nolan feels the best. The weather has been perfect for strolling around the neighborhood and kicking off the fall season with a trip to Cider Hill for a visit with the farm animals and some delicious cider doughnuts!!!  Again, we thank you all for your constant love and support.

 Nicole

A Sincere

Thank You

From the Smith & Wanyo Families

Never in our short time as a young family nor in our young lives would we have ever thought that we would be writing a thank you note like this.  Sure, we expected to be writing thank you's for gifts and congratulatory milestones such as birthdays, anniversaries, new houses, new careers and….new babies.  Our greatest gift has been, and always will be, our Nolan.  Though he was born with a host of medical challenges, he is just like any other boy his age….happy, curious, loving, and needy!  Nolan’s having been born with a brain tumor, hydrocephalus, and a heart condition known as Golan’s Disease, make him a 1 in 100,000 baby and maybe more in terms of rarity.  Needless to say Sincere, we have changed and rearranged our lives to ensure that Nolan gets the best of care that we can afford and the most of our time that we can possibly devote including nothing other than sleep.  This means that one of us cannot work and the financial burden is borne by Nolan’s dad alone.  While the care that Nolan is receiving at Massachusetts General Hospital is some of the best in the world, it will still take more than we can imagine beyond insurance to provide for the therapies and other non-covered and private pay costs associated with his treatments and other life needs.

This is just the short story of Nolan and, just as importantly, this letter is written to acknowledge those relatives, friends, communities, and totally unknown well-wishers who have taken up the torch, extended their hearts, provided support and valuable time in helping Nolan and us on this journey of a lifetime.  We know that there is so much more to go but we would be very remiss in not writing a thank you at this time.  It is impossible to mention everyone, so forgive us, but please know that there is no distinction between the person who offers a kind word, says a prayer, offers a hug, or just simply hugs their own child or grandchild on Nolan’s behalf than those who have spent countless hours in organizing events, fundraising, or donating financial support.

First of all, we would like to thank Jodie Goucher who has worked tirelessly in reaching out to not only the local community but also through the internet.  She has been a heaven sent gift to our family while facing challenges with her own children.  Steve Grasso and Jeff Berardino who have worked, and are continuing to work, hard on successful softball and golf fundraisers; Jen Zaccari from Glow in Amesbury that has organized her staff and clients in support of Team Nolie; and Anne Wanyo, who has spent countless hours taking us back and forth to MGH, staying with us during treatments, and providing loving care that only a grandmother can.

Next is the community who has proven that there is good in this, otherwise, tumultuous world.  You have come out beyond imagination with both your hearts and your support.  Provident Bank in providing services; Rob and Michelle Anderson who have provided the www.teamnolie.com website; Newburyport Bank in sponsoring a book and bake sale; special mention of the ownership and staff of Stripers Grille who donated a percentage of their tips and other funds for 2 days during a very busy weekend; Jennifer Runnion who was “Rollin for Nolan” in the Yankee Homecoming 10 Miler; Suzie Frost who hosted a Stella & Dot party; the City of Newburyport for the softball field; the following sponsors of the softball tourney, The Daily News, Market Basket, Shaws, Stop & Shop, Amesbury Skate and Sport, Sams Club, Budweiser, Seabrook Getty, Shaheen Brothers, Emergency Ice Company, Building 19 ^1/6, Catalano Remodeling, Henry Graf Skating Rink, “DJ for the Day” Nolan Pellitier; and the following teams and their families, Team Nolie, Iannazzi Electric, Lowell Central Electric, Slush Puppies, Team Squids, I’d Hit It, Bad News Beers, and Young Guns.

To the community at large, all those who wish to remain anonymous, and the hundreds of others whose names would not fit in this note, we owe the deepest of gratitude.  We find comfort knowing that you are with us in this journey and we love you for it.

Sincerely,

Nicole, Mike, and Nolan Smith

The Smith and Wanyo Families

Hi everyone--Join us for the Team Nolie Golf Tournament on Sept 19th! Nolan is our 1 yr old friend who is currently undergoing chemo treatment for brain cancer. Our goal with this event is to have fun while helping the Smith family through this dif...ficulty time. We hope you can make it! Registration form/additional details included in link. Thanks!Read More

Hi Everyone!

We are having a softball fundraiser for The Nolan M. Smith Fund this Saturday!! Here is all the info....

WHERE:  Cashman Park at the Newburyport Public Boat Ramp

WHEN: Saturday August 8th    8:30 am -10:00 pm (rain date Sunday August 9th)

One pitch, 9 inning , single game elimination

Full women,men, and co-ed teams w/ 16yr age limit Ten fielder format

Open free substitution during batting order, and in replacement of fielders

Food concession

50/50 raffle

Home run derby

contact Stephen for team entry info.  978-463-2895

$10.00 per player ($100.00 minimum per team)

ALSO>>> redsox raffle

we are selling raffle tickets to benifit the Nolan M Smith Fund  the tickets are for the REDSOX

VS WHITE SOX  these tickets are super seats!  FIELD BOX TIX section 25 box 56 row F seats 3+4 they were doanted by Anheuser Bush Co.!!! 

Hope to see you all Saturday!!!!!