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…

Thank you all and God bless!


“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

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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.


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.