Turn of Event’s – Lap 3

Thank you everyone for all your kind words, words of encouragement to Nathan and your prayers…
It has been a very busy week; Nathan was admitted into the hospital late Saturday evening for a fever and bad chills, the concerns with the fever for Nathan where because he very low blood counts, the fever represented a possible infection, this kinda of stay we are very familiar with from the last 2 cancer battles.

Thankfully the blood cultures showed no growth for infection, but the thought is the cancer is the cause of the fevers, as Nathan runs a low grade fever, chills, and gets winded every evening, we need to watch how high the fever gets as with not having an immune system there is always a chance for an infection to find its way.

Through the course of our stay more results came back for Nathan and there are even more concerns: Nathan has a rare diagnosis and on top of that it’s been determined to be aggressive. Nathan’s Dr’s have been in communication with Dr’s across the country consulting, there are many voices going into his treatment to give him the best care they can and chance to kick it’s butt, his specific diagnosis is just not common in children and with it showing it’s aggressive that adds to the complexity as well. The Dr’s have repeated the bone marrow biopsies and also did an LP, along with that LP he received an infusion of chemo through the access, they need to make sure the cancer cells have not matured and entered the spinal fluid. This brought us into the chemo world much sooner then we had anticipated, so of course preparation instead of having time was done quickly. Since the new information has come to light, the Dr’s have had to come up with a new plan to get Nathan to transplant as long as these last marrow biopsies show the t-MDS has not matured.

Nathan is doing the best he can; naturally he has his times of fear, sadness, and concern and others he’s plotting and planning just how to prank his nurses when he is inpatient again and for the transplant stay; that’s our Nathan!

We are home again for now and waiting for news of his test results so we can get this path paved and on the way. Please keep Nathan and my family in your prayers, this is gonna be a very different battle for him and our family to go through but we will do this…

NATHAN IS A FIGHTER; AN ULTIMATE WARRIOR!!!!!
Thank you all and God bless!

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A Piece of Home 2016 “Sponsor a Tree”

It is nearing that time of year again, the time where everyone starts preparing for the holidays, whether you celebrate Christmas, Kwanzaa, and Hanukkah(these are just a few of the celebrations that take place). Although in some aspects different they have one thing in common and that’s to be together as a family and usually in the home enjoying the celebration. In the world of childhood cancer or any serious medical world that’s not always the option for those going through the treatments or the hardships, many spend their time of celebration in the hospital’s where they need to be at that time for whatever the reason it may be. Our mission at Nathan’s Story with “A Piece of Home” is to help ease that by bringing some of that home comfort to those in patient.
As many of you can only imagine being in the hospital over the holidays is no fun…now imagine yourself as a child fighting cancer, a new way of life for you and your family that you have just embarked on in the last month. Nathan started his chemo treatments on Thanksgiving day of 2010, what better day we thought to be thankful for a “beginning to and end”. The chemo treatments were three weeks out of four in the hospital as inpatient, he was pulled out of school and taught by the teacher in the hospital and a home teacher the schools sent to our home, when he was there. Nathan and our family spent every holiday in the hospital as in patient either for chemo treatments or fevers/isolation with the exception of Halloween. The staff did everything they could to help make this as joyful and painless as they could but when it all came down to it we were still in the hospital for the holiday’s; childhood cancer seemed determined to take from us those special moments that we as a family cherish.
We at Nathan’s Story C.C.O. wanted to help make it even more special, beings we could look at it from a different perspective then most since we actually were in the situation. We personally came up with the idea of bringing in “A Piece of Home” for the holidays. Our first year and within months of becoming an official 501(c)(3) we raised funds to get the children that would be in the hospital for the holidays their own holiday tree. The trees we chose were specifically chosen with the children in mind and with the help of Nathan himself. The trees are no more then 32-36″ with fiber optic lights, lights that change colors automatically and cascade through the room with soft soothing colors to be able to relax and and enjoy. The children as well as the family truly enjoy the soft glow of the tree and the changing of the lights, it offers a relaxed and peaceful moment.
We reached out to everyone with our “sponsorship program” last year for the first time to help us grow in our mission and make it even more special and there was a response that was truly amazing and helped not only provide the trees but we where able to provide a holiday dinner and gifts for ALL the children including the siblings, we had crafts and just all around a great coming together of everyone around enjoying each others company and conversation; all this on the unit of a hospital.
Won’t you please help us again by “Sponsoring a Tree”…

Sponsorship is $20.00 per tree; you can donate by secure check out below or with check,  Mail to: Nathan’s Story PO Box 213 Galena MD 21635

Thank You…

Nathan’s Story




https://p9.secure.hostingprod.com/@www.nathansstory.com/ssl/index.htm

 

**All donations are tax deductible as we are a Federally approved 501c3 non-profit and will provide receipt of donation upon request.

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“Pain and Beauty of the Pediatric Oncology Nurse”…

nathanprofile croppedI came across this on a friends post as a share, I’ve seen it before and it moved me then, so this time I decided to touch on it (I’m not honestly sure who is the original author to it, to give them proper credit for it); this friend is also a Pediatric Oncology Nurse, was one of many Nathan had as a matter of fact. This is a great write, one that is so true I’m sure from a nurses angle, I can imagine how so many must say these words when they hear of the jobs these nurses have, but let me tell you what those nurses mean to US; US the families of the children fighting; THE WORLD!! We rely on them so much, they are our shoulders, confides, our support, and the list just goes on and on, they become part of our world like one could never imagine, but that is us, the parents and family; what they mean to our children far exceeds this…

Our children depend and rely on them for everything to help get them through that “in patient” stay, no matter what it may be for at the time(thre are so many) to treat their cancer with meds, to take the pain away, the nausea, itching, burning, fevers, rashes, and the list goes on and on. Nathan would thank his nurses every time they came in no matter what it was he said thank you, he may not have liked what was happening at that time but he knew it was going to help him in his time of need.

Nurses are an amazing special breed of people, we are grateful for our nurses and everything they have done and continue to do…lastchemo

~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~

The automatic response when I tell someone that I work in pediatric oncology is inherently the same;

“Wow. that must be really sad.”

And every time a person says this, a million thoughts and feelings run through my head of things I could tell them… things I could tell you.

I could tell you about the anti-nausea medications, the strict chemotherapy orders, the weekly radiation schedule, the study drug protocols… the blood product transfusions our patients need daily to survive. The bio-therapy, the lab draws, the IV medications, the pain that never seems controlled. The hazardous body waste I’ve dumped. The clinical trials. The meticulous alcohol scrubbing, chlorohexidine wipes, sanitizer, sterile gloves, and painfully dry hands from washing so much because I’m determined I won’t be the reason a child gets a blood stream infection.

I could tell you about the nasogastric tubes I’ve inserted and watched be thrown up, the sadness of listening to a 16 year old, eager to experience life and her teen years, tell her dad how sad she is to miss her youth group retreat that weekend.. The worry in a mothers voice when she asks, “will my child’s hair or eyelashes ever grow back?”

I could tell you about the telephone calls to the doctor at 3am when something didn’t seem right, the fear I felt when my 3 year old patient had a brain bleed, the days when I didn’t eat until 10 hours into my shift because I was worried about my sick patient. The times we’ve called Rapid Response team.

I could tell you about the tears left on my shoulder as I held the mother of a patient who relapsed, and the pain in her voice as she asked, “Why us?” I could tell you the devastation I felt when another patient’s mother broke down to me for the first time in line at Starbucks because the doctor just told her “there’s nothing more we can do for your son”.

I could tell you how hard it is to have professional boundaries when you feel so close and invested in your patient’s lives, how the world seems to stop when a patient’s status changes to DNR… and the times I’ve had to step into the break room to take a few extra minutes to gather myself and breathe.

But,

I could also tell you about the warm hugs, excited greetings, the smiles, the high-fives, the happy transplant posters, the hand drawn pictures, the belly laughter, how special I felt when a patient referred to me as her “favorite” nurse, the friendship I built with the mother of a 9 month old who I cared for most of his short life, the talks about faith I’ve shared with other Christian families, and the way my heart leaps with joy when my patient finds out they are in remission after the battle of their life.

I could tell you about the small fingers that instinctively curl around mine at 4am when I’m feeling for pulses or checking capillary refill, the time a patient kissed my gloved hand as I de-accessed her port, the adorably small babies I’ve held, fed, burped and loved during the first few months of their life. The way I become a Ninja in the dark as I tiptoe around a room….bending my body in strange ways to prevent breaking sterile field or wake up a wiggly baby as I draw blood from their central line.

I could tell you about the five year old who prances around the unit grinning cheek to cheek with her IV pole in hand, the one who calls me “that lipstick nurse”, the little boy who always offers to share his trains or cars, the treats given from families, the thoughtful notes, the privilege of being a “requested” nurse on a primary team.

I could tell you about the pride I feel working for a hospital leading in research and therapies, the happiness that comes with witnessing successful treatments, the number of times a stranger has thanked me and told a story of how pediatric cancer affected their life after seeing my badge.

I could tell you all of these things, but even if I did… it wouldn’t be enough. An entire description will never suffice. Nothing can prepare you for the emotional investment in this career.
And that, my friend, is the pain and beauty of being a pediatric oncology nurse.

 

** ALL PHOTOS, VIDEOS, AND ETC. ARE PROPERTY OF NATHAN’S STORY INC. MAY NOT BE DUPLICATED OR USED WITHOUT PERMISSION OF NATHAN’S STORY INC. PERMISSION WITH THE EXCEPTION OF SHARING THE STORY AS WHOLE  AS SHARED ABOVE …IN DOING SO CAN BRING LEGAL ACTION

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A Piece of Home 2015

As many of you can only imagine being in the hospital over the holidays is no fun…now imagine yourself as a child fighting cancer, a new way of life for you and your family that you have just embarked on in the last month. Nathan started his chemo treatments on Thanksgiving day of 2010, what better day we thought to be thankful for a “beginning to and end”. The chemo treatments were three weeks out of four in the hospital as inpatient, he was pulled out of school and taught by the teacher in the hospital and a home teacher the schools sent to our home, when he was there. Nathan and our family spent every holiday in the hospital as in patient either for chemo treatments or fevers/isolation with the exception of Halloween. The staff did everything they could to help make this as joyful and painless as they could but when it all came down to it we were still in the hospital for the holiday’s, childhood cancer seemed determined to take from us those special moments that we as a family cherish.

We at Nathan’s Story C.C.O. wanted to help make it even more special, beings we could look at it from a different perspective then most since we actually were in the situation. We personally came up with the idea of bringing in “A Piece of Home” for the holidays. Our first year and within months of becoming an official 501(c)(3) we raised funds to get the children that would be in the hospital for the holidays their own holiday tree. The trees we chose were specifically chosen with the children in mind and with the help of Nathan himself. The trees are no more then 32-36″ with fiber optic lights, lights that change colors automatically and cascade through the room with soft soothing colors to be able to relax and and enjoy. This year would be our second year, and we hoped to make it even more magical then the last…We wanted to provide the children and families not only the trees but a holiday evening, that would include dinner, trees, gifts, crafts, and maybe a few games…an evening that will let them forget where they are and let them feel like they have “A Piece of Home” with them.

We are started a fundraiser to help us do just that, and it soared with the help of our volunteers and friends it was a GREAT success, there was plentiful for everyone. We had so many friends and others whom we did not know jump right in and sponsor a Tree for the children and the volunteers to help us that evening was amazing. A special group called the Island Creek Garden Tractor Pullers got involved with the help of the donation of the toys for the children and their siblings, they took up donations and we met one evening and went shopping, we had children from ages 2wks to 18yrs of age.

We’d like to thank everyone who became part of such a wonderful moment for the children and families over the holiday season, you all truly are a blessing.

Thank you!!!

Nathan’s Story Childhood Cancer Organization

 

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** ALL PHOTOS, VIDEOS, AND ETC. ARE PROPERTY OF NATHAN’S STORY INC. MAY NOT BE DUPLICATED OR USED WITHOUT PERMISSION OF NATHAN’S STORY INC. PERMISSION WITH THE EXCEPTION OF SHARING THE STORY AS WHOLE  AS SHARED ABOVE …IN DOING SO CAN BRING LEGAL ACTION

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