Pre – Transplant: t-MDS (AML/Leukemia)

Nathan admitted into the hospital directly after surgery for his central lines on Wednesday, there were some complications feeding his lines in, Dr. tried the left side first, where his original lines were placed in 2010, and had no success so moving onto the right side with some complication’s along the way as well, he was able to feed the lines in successfully. Nathan had mild muscle discomfort but with the help of heat packs and a small amount of meds he has almost completely bounced back. Thursday Nathan received his first round of chemo of Bulsaulfan, to begin the bone marrow transplant process, they call these the “minus“ days, leading up to “the” day. Nathan’s received this chemo (Bulsaulfan), every 6hrs, round the clock; he would have it brought in hooked up and it would run for 2hrs, every day for 4 days. During this time he did well, he maintained himself with minimal side effect, nausea and mild fatigue. His central line dressing though is creating havoc as it did before and with this time Nathan’s system being pushed to a greater extreme this is a problem as he needs a sealed and protected site where his central lines exit his chest to prevent infection. His skin has already reacted to the adhesives and it’s creating a contact dermatitis type reaction which we are all being very cautious as as we cannot have it completely breaking down going into transplant on Thursday and the recovery afterwards, so it’s a meeting of the minds to keep it in sync.

Today is day 5 in, (-3) today, Nathan started his second chemo, Cyclophosphamide he will receive this for 2 days at 2hr infusions each along with round the clock medication that called, Mesna; it’s a rescue med to protect his organs from damage due to receiving the Cyclophosphamide chemo. This particular chemo is much stronger and will wipe Nathan out very quickly, and has. It’s been 2 hours since his chemo stopped running and he’s already felt nausea with in ½ hour and much fatigue, he is currently sleeping as I write this.

*Day:  -2

So as life would have it, my update didn’t make it out as planned and we continued into Nathan’s evening with a very sick kiddo into the night and if that wasn’t bad enough for him it triggered a migraine on top of it all, making the vomiting much worse. Today he is feeling much better, thankfully; but again he is hooked up and receiving chemo as I’m re-updating my update.

Nathan is feeling the nervousness of all this especially this second chemo and how he knows it’s going to knock him down and then of course “The transplant” along with the recovery. His spirits are good and he’s determined to kick this, and beat cancers butt and get back to life and everything he loves and enjoys.

Thank you to ALL for so many great words of encouragement and positive thoughts and the many many prayers being said for Nathan and my family… God Bless!

 

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Maintenance Chemo

As many know Nathan has been on a maintenance chemo schedule with hopes to halt the growth and progression of his cancer. The first was infused through an LP procedure and then he went onto chemo injections that he had to go to the hospital everyday for which consisted of 3 injections of chemo each time and then onto the chemo administered at home every day…he did well with these all considering what he’s experienced in the past, the big problems is chills, fatigue, nausea, and of course his blood counts. He ended last week with a BMB which we shared that there was no new growth/maturing in Nathan’s cancer cells and YES that’s fantastic news but in the same breath Nathans cancer cells did not decrease in % at all they stayed the same, the Drs where hoping to see a decrease to benefit/aide Nathan in this battle. As I explained before there are many Drs involved in conference with Nathan’s case as it’s not common, but pretty rare…concerns are high in controlling it still and Nathan will be going back onto more rounds of chemo, with added meds/chemo’s everyone was hoping that by now Nathan would be in the transplant process. The added meds are still being determined as the results we have now are only preliminary results and Drs are waiting for the actual full results before making any decisions. Nathan’s body has been through a lot of chemo’s in these last 6yrs, and not just regular doses but HIGH DOSES of chemo’s and his organs took some major hardship during his second battle with osteosarcoma, that we have to be aware and cautious of that while treating in this maintenance course; if things are to hard they can create organ failure and Nathan’s transplant will be put off. We cannot emphasize enough how badly he NEEDS this transplant it is his only chance of beating this.

As far as the donors are concerned…Nathan did not match anyone in the states(other then his dad being a partial), they had to reach out to the international registry for him and found 3 matches, the 1st donor who is going through all the process is still on the possible list, 2nd donor is not on the registry any more so he’s out and the 3rd has responded and is going through the process of testing now, once his results come back the Drs can make a better decision as to where to go from here.

Nathan is hanging in there he has good/bad days and days of just being here feeling like junk, his nausea has been a bugger these last days and that creates another problem for him; eating, Nathan needs to keep eating to maintain and prepare for transplant,as he goes through that process his body will be put to extreme limits and he will need a lot of strength before hand to push through it all. Although we are anxious to get our boy into transplant to save him we are not anxious about it at all with what he will endure, it will be a very trying and difficult time/experience, and it honestly totally scares the hell out of us.

I cannot deny I’ve been a bad about pushing him to do his school work as i honestly sit and look at him and think i just can’t make that fight right now, I just want to enjoy his company and laughs while he’s in the mood, so yes he’s gotten behind a bit and those that know me…that is not a thing I ever let happen but one thing I know is every laugh I share with him through these days of worry and concern along with much fear is vital, not only for me but for Nathan as well.

We will have another meeting later this week and find out our new direction with this all, I ask you all to please keep Nathan and my family in your prayers…

Thank you and God bless!!!

 

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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

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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.

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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