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| Notes from friends and the Purdy family |
| Gracie
Purdy died Monday, April 21st, from the same tumor that took Elena's
life. It's ironic that God wanted me to walk down this road again,
holding their hands, as they endure this, the unthinkable....the
unbearable....reality of life. Gracie loved the colors pink and
orange, and was fiercely independent! She never complained once, and
her thoughts were always of others first, especially her brother,
Nolan. She loved Webkinz and wrote beautiful stories. Prayers for her
parents, Llisiana and Martin, and Nolan, her 10 year old brother, are
requested. I'm sure Elena was there to make sure Gracie ate, and
played with all of the other helpless victims of this disease. We must
find a cure. We must. I was so lucky to have had you touch my life,
Gracie. You taught me the lessons I missed the first time around.
With love, and admiration.....Miss Jennifer In lieu of flowers, the Purdy Family graciously asked that donations be made in Gracie's name to The Elena Tresh Foundation. The foundation is in the process of selecting a research project that targets brainstem gliomas. There are promising new developments, that desperately require funding to bring them to light. There efforts to find a cure will memorialize Gracie, by naming the first sponsored effort in her name. This mission is no longer an option. In 9 years since Elena's death, there has been little advancement in the treatment of these types of brain tumors. This has to change. It will change. Thank you for all of your support, and willingness to make a contribution to their efforts. Together, we can make a difference. |
 A heartfelt thank you goes out to CCC for their support. To the Girls Soccer team, the Wrestling team, and the Boys Soccer team for holding pancake breakfasts, our appreciation cannot be put into words. We are all touched by your labor of love. |
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January 24, 2008
A few years ago the Purdy’s took a family vacation to Beaver Creek, Colorado for some winter activities. They all learned to ski, spent quite a bit of time sledding and enjoyed a brief glimpse of life in the Colorado mountains. During all of the treatments that Gracie has endured over the past seven months she often referred to wanting to see snow again. So, the Purdy’s packed up their things in early December and headed for the mountains of Colorado. At the time they purchased their tickets the snowfall had been almost non-existent in the mountains. In fact, just a few days before their departure things were looking bleak. However, things often have a way of working out for the best and the Purdy’s landed in Denver, Colorado in the middle of an enormous winter snow storm. If Gracie wanted to see snow, she got her wish. The Purdy’s enjoyed a three hour drive from Denver to Beaver Creek in a heavy snowstorm. We all know Martin has exceptional talents with automobiles, however, a driver was waiting at the airport to take them to Beaver Creek, which was good for all the other drivers on I-70! I am confident Gracie will never forget what a beautiful sight a snow storm in the Rockies can be. Each day of the vacation brought more snow. If you ever wonder if God is watching, he proved to Gracie he had his eyes on her. She got all the snow a little girl could ever want! Upon a very late return from Colorado, due to weather delays, the Purdy’s pulled up to their home in Belleair to quite a surprise. A very special neighbor had decorated the entire home with holiday lights. The entire outside of the home was lit up to greet them back to Florida. If that wasn’t enough, another fine neighbor had set up a Christmas tree inside the home with all the trimmings and gifts underneath. Martin and Llisiana could not believe the expression on the kids face when they saw what had been done at their home. They also have continued to express how humbled they have been by all of the great people who live in their community who have done so much for them and their family. Gracie had been doing so much better over the last two months until early January. She started to have some issues with her balance and her speech. Her double vision has never gotten better. These may be symptoms of tumor growth. The Purdy’s are back visiting all the physicians and taking tests to determine what is taking place and what to do from here. At this point they do not have all of the results, however, they have lived this everyday for seven months and their experience tells them this may not be a good sign. I know that all of you pray for Gracie, the snow storms you sent to her in Colorado are just one of many examples of your prayers, but your prayers right now are very important. Put the health of Gracie, the strength for Martin and Llisiana and the solutions for their physicians in those prayers. The Purdy’s cannot put into words how much all of you mean to them. What they have faced every day for the past seven months is beyond anything I can comprehend, however, your support is working. They are doing an outstanding job of assisting Gracie with her daily challenges while trying to keep their minds off what tomorrow may bring.
John P. Connelly |
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November 6, 2007
Every day it seems as though someone stops to tell Llisiana or me that they are praying for Gracie or how much Gracie’s illness has impacted and changed their lives. Some have friends or relatives in other parts of the country or the world who are praying or offering prayers at churches or shrines for Gracie. It is absolutely amazing the effect our little girl has had on everyone. She has done more good in 5 years than most of us do in a lifetime. Gracie is doing great! We thank God every day for her continued healing. Her strength and stamina seem to be nearly where it was before her diagnosis and slowly we see her left eye gaining more and more movement. We want so badly for her eye to get better for her. It would do so much for her self esteem and confidence that she is getting better. Our visit on October 3rd with Dr. Rodriguez, the neurosurgeon at All Children’s, went very well. He examined Gracie and reviewed her MRI with us and pointed out that what appeared to be hydrocephalus in fact was not. He suggested we keep a close eye on Gracie and bring her in immediately if any symptoms presented. We were scheduled for a quick ten-minute MRI last week to recheck her for hydrocephalus but since she has been doing so well we decided it wasn’t necessary. We sent Gracie’s scans out to six doctors around the country and all agree that there has been improvement in the tumor since radiation. Gracie will have her next MRI around the end of November or early December. For now, we are just keeping a close watch on things and are praying that her tumor continues to regress. It seems that nowadays we live life from one MRI to the next. We finally got the nutrition report back from Jeanne Wallace. Wow! She covers so much in her report that it is overwhelming! Llisiana and I had a 1-hour phone conference with her where she discussed in step-by-step detail each aspect of the nutrition plan. We have implemented her recommendations to the best of our ability and feel really good about what we are doing. Our whole family has switched over to an all-organic and mostly vegetarian diet. It took a little doing but we did it. Nolan and Grace are actually on board with it although they occasionally ask if they can stop at McDonalds now and then. I tell them no way! It’s amazing what you can get them to eat if you don’t give them any choices! We still have to watch Nolan with his school lunch however. It seems he’ll jump off the bandwagon if we let him have a lunch ticket. I can’t say enough about the wonderful children at St. Cecelia’s school. The children organized “Operation Hope” for Gracie and sold Gracie bracelets at the school. Last week we received a check for over $1000 from the school towards Gracie’s fund. And just the other day Nolan brought home $7.00 donated from Tiffany, one of his 4th grade classmates. Proceeds from a lemonade stand. The kids are just incredible! The highlight of the past few weeks had to be our camping trip to Disney’s Fort Wilderness . It was a scouting event for Nolan. Nolan’s den leaders, The Johnson’s, graciously offered their cabin and golf cart to us that they had reserved for themselves so that Gracie could come along. We all wound up sleeping in the tent the first night and then wound up in the cabin the second night. It was a great weekend and it made us realize that we need to do a lot more of them. I promise to try to post more often. I know so many of you are praying for our family and want to know how Gracie is doing. Thank you all so much for your support and prayers. It means so much to us to know that all of you, friends and friends we’ve never met, care so much.
Peace and God bless
Marty |
| October 2nd, 2007 Well we woke up this morning and decided to postpone Gracie's surgery. After praying all night Llisiana felt strongly about waiting and getting other opinions and I agreed with her. Llisiana also wanted to have Gracie anointed at a healing mass beforehand. It's not that we don't believe the doctors it's just that we don't believe the surgery is necessary at this time. Our friend Jennifer Tresh "The Webkinz lady" was here last night and saw Gracie's mood and condition and advised us not to do anything until we spoke to the neurosurgeon. I called this morning and cancelled the surgery and waited until 4pm to hear from Dr. Rodriguez. It was a relief speaking to him. While he agreed that in looking at Gracie's scan that additional fluid was present and her ventricles were larger than in the previous scan he said that we may or may not need to perform the shunt surgery right now and wanted to see Gracie. He said he was glad that we postponed the surgery because he felt uncomfortable proceeding without even having examined her. We have an appointment with him on Thursday where he wants to evaluate Gracie and make a decision at that time. We may still have to do the surgery but at least now we will be at peace with our decision. Gracie is doing well today. This morning she wanted to go to the library to read Garfield books and check one out for her brother and one for herself. We sat on the floor reading for nearly an hour. It was really enjoyable. Gracie's reading is fabulous for a five year old. She has completely taught herself. I think some of it is partly due to all the texting she does back and forth with Ms. Jennifer on my iphone! She's very particular about getting the spelling right and is always asking me how to spell big words. This afternoon at 1pm we attended another healing mass at the House of Prayer. What a wonderful experience! Father Peck performed the mass and anointed Gracie and our family. Father said that today he deeply felt the presence of our Lord within him and you could certainly tell! During the Mass he was dancing and skipping around the entire congregation uplifting everyone! Gracie really enjoyed it although she thought he was kind of kooky! We don't know what the tomorrow holds for any of us. We do know that through Gracie's illness all of us have been drawn closer to God. This has been a good lesson for us all. Too often we get caught up in the day to day without giving thanks to the one who makes it all possible. I told Father Malley in one of our many conversations that weekly Mass has taken on a whole new meaning. In the past we would attend but not always hear the message. I even remember complaining in the past that there was no message. I'm finding out now that the message has always been there, we just weren't listening. May God Bless All Of You, Marty |
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Monday, October 1st
All in all today wasn't the best day. We
arrived at All Children's and nurse Alice accessed Gracie's mediport without a
problem. When it came time for her MRI a nurse came and took Gracie from
Daddy's arms for the test saying that I wasn't allowed in the room. At Gracie's
first MRI I was allowed to take Gracie into the room and hold her while she
received her anesthesia and that has been our routine for all of her radiation
treatments. I had already removed all metal objects from my body with the
assumption that I would accompany Gracie into the room. Needless to say, Gracie
was terrified. Stupid Daddy for letting her go! After a few tense moments
the anesthesiologist came and got me so I could hold Gracie's hand
while she was put to sleep. Luckily when she woke up she didn't remember
anything or else I would have gotten a fistface! The good news is that the tumor
appears stable. The bad news is that it hasn't shrunk significantly. The doctors
say that we could continue to receive the benefits from radiation for
anywhere from three to six months. While we would have liked to have seen
regression we have to be thankful for what we got. A little more bad news is
that the doctors say that Gracie's MRI shows that she has developed
hydrocephalus and want to install a shunt on Tuesday. Hydrocephalus can be
serious but Gracie is showing no symptoms whatsoever. Tonight Ms. Jennifer,
the "Webkinz lady", brought Gracie the very rare Cheeky Cat and she
was running around the house with loads of energy in a great mood. At this
point we are reluctantly proceeding forward with the surgery. We will pray
on it tonight. Our decision could change in the morning. We will let
everyone know. Thank you all for your continued prayers and show of support for
Gracie and our family.
Marty
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September 25th, 2007
Hi
everyone, sorry I haven't updated lately. Honestly there hasn't been
much news to report and I guess that's news in itself. Gracie is doing
great. We are really starting to see the effects of all of the prayers
being offered for Gracie. Her symptoms are improving daily. Her eye is
getting a little better and her swallowing seems to
have improved so much that we don't even worry about
it. I think her swallowing difficulties were mainly due to the
post radiation swelling or the thrush and we seem to have that under
control for now. Our friend Jennifer Tresh,
who has been so helpful to us through all of this, suggested
we have the doctors prescribe Fluconazole which is a pill
instead of the liquid Nystatin for her thrush. It seemed to knock out
the thrush in a hurry. What a relief. We've also managed to
get Gracie completely off of Decadron!
Llisiana and I are pretty much in
fight mode right now. We've switched Gracie to an all organic diet and
are trying to keep sugars to a minimum. Llisiana is doing an awesome
job of getting nutrients, vitamins and homeopathies in Gracie.
It's not an easy job! She's been very creative mixing them with soups
and smoothies and anything else she can get Gracie to eat.
It is literally an all day job. We contacted
Jeanne Wallace at Nutritional Solutions to
help with Gracie's nutrition. We received her report last
week and are trying to implement her recommendations.
Llisiana
has also managed to get Gracie to school 2
or three days a week for a couple of hours
a day. Gracie really enjoys being there. Last
week Gracie actually made it from 10 - 4. They even waited
around for Nolan to finish his band
practice. Llisiana still manages to muster up the
energy at the end of the night to sit and pray and read the
Bible in Gracie's room before she falls asleep in Gracie's
bed. That's where she sleeps ever since Gracie was diagnosed. Nolan
gets to sleep with Dad. We've also started a new ritual in our house.
Every night, after dinner, we gather together in a circle to
pray for Gracie's healing.
After that we will read a passage or two from the Bible and
discuss it. Why it took Gracie's illness to get us to
start doing this I'll never know but
I'm thankful to the Lord that it has happened. It's just
another one of the many little miracles that we have been blessed with
since Gracie's diagnosis. It is absolutely the very best part
of our day. The kids really seem to enjoy it as well.
Fighting cancer has become a full
time job for Llisiana. It's a desperate feeling. Every waking moment is
spent thinking of Gracie. Most days it seems difficult to even
breathe. It's become increasingly difficult for me to help
since going back to work and that's been a little
frustrating. I spend most of my free time looking at
our medical options while she focuses on the immuno building stuff and
homeopathic remedies. Somewhere in between all that she manages to cook
and keep the house livable. Our mothers have worked
out a pretty good system where one of them is here to help most of the
time until I get home. Also all of the meals that friends, neighbors
and family members have prepared for us have been
extremely helpful and delicious a special thanks from Llisiana
on that one!, and to the ladies
that got together and prepared all the meals from Dinner4U thanks
again for your kindness and thoughtfulness, we understand that part of
the proceeds went to Gracie's fund. Llisiana's
sister Sonia has been here helping with the housekeeping, laundry,
dishes, pets and even pressing our clothes and sleeping on the
couch for the past two weeks. She has been an enormous help,
just her presence has been a source of comfort to us.
Unfortunately she went back to New York last week. We're
sorry to see her go. What we really need is a Nanny!
Last
week we started looking into water filtration systems
for the house to filter out chemicals in the water that can be
especially harmful to cancer patients. If anyone knows
anyone who knows anything about this could you please have
them contact me. There are a lot of systems out there
and it would be helpful to get some knowledgeable advice. We are also
looking into the Erchonia laser
therapy device. Today Gracie has her first appointment with
Dr. Steven Wyckoff at Vitality Wellness in St. Petersburg. In
addition to the laser Dr. Wyckoff is going to focus on Gracie's whole
body wellness. Our feeling is that anything we can do to fight this
cancer, no matter how small, is worth doing.
Gracie has started with Sound healing
and Reiki treatments. It is so very interesting and
even Llisiana had a session too. Kathleen Miller has
also been working with them and Llisiana says she is very encouraged.
Kathleen has been working on Gracie almost daily by way of distance
healing she has so graciously offered to help Gracie and we are so
encouraged by her energy level.
On Monday the 10th
we traveled to Duke University for our
first visit with the doctors there. Unfortunately they had very little
to offer us. There are no new drugs or drug combinations that are any
more promising than what we already know about. We could put Gracie
into a clinical trial there but that would require us to treat her
there at Duke every two weeks. With Gracie's condition and the drugs
that she would be on for the trial the doctors would not
recommend flying. What we may do is treat her here with the
same drugs under their guidance. October
1st is a big day for us. That's when Gracie gets her
first post radiation MRI. Both of us are very anxious
and are praying for a good outcome. The MRI results will
pretty much determine our next course of treatment. We
are sending the results to specialists around the
country so that we can pool the opinions. Please
pray for good results!
We want
to thank Kathy Helmus and her
family, Karla Rettstatt, all of
the volunteers, the
Town of Belleair, and everyone
that attended, for all of their efforts in
making Gracie's Big Splash a
huge success. It surpassed all of our expectations.
It was an awesome and emotionally
overwhelming event. So many people unselfishly volunteered their time
before, during and after the event. We can't thank you enough. A
special thank you goes out to the Belleair Fire
Department. Their hosing down of the kids (and some
unsuspecting adults) was the highlight of the event. And to our
friend Marty Krajnik for providing her Radio
Disney MC talent, and to everyone who helped
with donations for the event and
everyone who was involved in the selling of the bows
and bracelets. Also thank you to Roly Poly restaurants
for donating a percentage of their sales to Gracie's fund. The
generosity shown for Gracie from everyone involved
was unequivocally an expression
of everyone's wish to help Gracie be a child
unburdened by this. Thank you!
We
also would like to make a thank you to the children who
volunteered and helped to raise money for
Gracie's treatment fund by way of:
Car Wash - Collin, Savannah, Michelle, Max,
Tyler - $165
Lemonade stand - Rachel, Makala, also
kids on Indian Rocks Beach that
we do not know! Gave us $7 or 13 dollars
Ribbons, prayer bands (on street
corners in Belleair in over 90 degree heat!) - Brett,
Michelle, Michael - $1500
Door to door flyers - Gracie's Big
Splash - Brett, Michelle, Danielle, Page, Sterling,
Michael, Quinn, Hampton.
And
all others not mentioned here there are so many we have heard about and
we would like to thank you too!
These
children took it upon themselves to do this for Gracie. It
means so much to us.
Kathy
Helmus told me a story about how her family was sitting around the
table and Michelle asked her mom what they were going to do for Gracie
that day. Kathy responded that they've been doing so much lately that
maybe they should take a day off. Michelle replied "Mom,
Gracie doesn't get to take a day off, why should we?" Thank you
Michelle. You lift our spirits!
I also need to tell you
about a very special spiritual
bouquet that was presented to us before our trip to
Duke by Mrs. Scanlon from the children at St.
Cecelia's School. The entire school participated in
making get well cards and prayer offerings. What a beautiful
display of love and compassion for Gracie. It has
provided us with an enormous amount of comfort that will last a very
long time. When the children get involved in this it touches us deeply.
The children
at St. Cecelia's have been so kind and welcoming that they
have truly made Gracie feel special.
Once
again we would like to Thank all of you who have so kindly
sent us cards, and the beautiful prayer quilts, Religious
medallions, cute plush animals and decorative
Guardian angels, books, toys, food and money! Thanks
to each and everyone of you! We
are blessed to live in a community that is so giving
and compassionate.
Marty
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| On Monday July 30th we reached the halfway point in Gracie's radiation and chemo. I've been speaking with Dr. Friedman at Duke and he has recommended that we add the drug Avastin to her current chemotherapy of Temodar. Dr. Friedman is recognized as one of the top brain tumor doctors in the world. Our doctors were reluctant to do it as there were some serious risks involved. They agreed to do it based on my conversations with Dr. Friedman but when our doctors called Duke Medical Center to get the dosing information they contacted Dr. Gururangen instead of Dr. Friedman. Dr. Gururangen heads up the pediatric department and he wouldn't allow our doctors to add the Avastin. He was unaware that I had spoken to Dr. Friedman about this and called me to explain his reasoning. While I would've liked to have started the Avastin now during radiation to increase our chances of killing the tumor I have to believe that these things happen for a reason. Father Ken said that sometimes our decisions may not be the right ones and that God is always looking out for us and guiding us through this. I truly believe that. For those of you that don't know, Father Ken is the pastor at St. Catherine of Siena Church in Clearwater. Overall Gracie is doing very well considering what she's going through. Mostly she's tired and doesn't feel like doing much. She complains about a stomach ache all the time. Medicine time has gotten much better since we switched from liquid to pills. The liquids tasted awful and it took forever to get her to take them. Since she has gotten used to swallowing pills what used to take an hour now takes only seconds. As far as her symptoms go her swallowing has improved to the point where it's not much of a concern for us anymore. She can drink pretty much anything she wants without us having to thicken it for her. That's been a big relief. Her left eye continues to turn in but she is able to move it to center when she looks to the left. Other than her eye she has no other visible symptoms of the tumor. I find that rather encouraging considering most kids get worse during radiation due to the increased swelling before they show signs of improvement. We've started to taper her dosage of Decadron to see if we can get her off the steroid without increasing her symptoms. She's on a relatively low dose right now but the steroids aren't good for her and they make her very irritable and increase her appetite. She's always hungry! Right now our plan is to get through the radiation and first round of chemotherapy and then schedule a visit to Duke for an MRI and an evaluation. We'll have to wait about four weeks after the end of radiation to allow the swelling to go down so we're looking at late September. In the meantime we continue to research all of our options and pray. And then pray, and then pray some more. We had a nice birthday party for Gracie on Sunday the 29th. She invited a few friends over and the family was all here. It went pretty well but you could see that Gracie just wasn't herself. I've got pictures and video of her from Disney two days before her diagnosis and she was a different child. It's sad to see the change that this has made in her and sometimes hard to watch her go through this. When her mood is good her sense of humor is wonderful. We still can't get over the generosity and support of the community. It has been overwhelming and has been an enormous source of strength for Llisiana and me. We definitely can feel the prayers being offered for Gracie and our family. You know how they say that God never gives us more than we can handle? Well during a visit to our home we told Father Ken that we thought that God was giving us way more than we could handle right now. He explained to us that there was a caveat to that saying. He said that God never gives us more than we can handle as long as we have faith and continue to keep God at our side. I think of that poem "Footprints in the Sand" often lately. One night I
dreamed a dream. I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life. For each scene, I noticed two sets of footprints in the sand, one belonging to me and one to my Lord. When the last scene of my life shot before me I looked back at the footprints in the sand. There was only one set of footprints. I realized that this was at the lowest and saddest times of my life. This always bothered me and I questioned the Lord about my dilemma. "Lord, You told me when I decided to follow You, You would walk and talk with me all the way. But I'm aware that during the most troublesome times of my life there is only one set of footprints. I just don't understand why, when I need You most, You leave me." He whispered, "My precious child, I love you and will never leave you, never, ever, during your trials and testings. When you saw only one set of footprints, It was then that I carried you." There is definitely only one set of footprints right now in our lives. We continue to be strong and optimistic that Gracie will be completely healed. With God's strength Marty |
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