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Choosing the 4th Option

Pediatric Article   (5,232 Views 10 Replies 644 Words)
by NutmeggeRN NutmeggeRN, BSN (Member)

NutmeggeRN has 25 years experience as a BSN and specializes in kids.

2 Followers; 5 Articles; 42,343 Visitors; 3,764 Posts

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A young child is 5 years into treatment for pilomixoid astroctytoma. Decisions need to made continuation of therapy or not. The parents have sought counseling from friends and Clergy. My heart hurts. This is my family's story.

Choosing the 4th Option

As a school nurse for 20 years, I have had more than my fair share of kids who have been diagnosed with cancer. I have had kids win the battle and lose the battle. Some had intensive therapy regimes, with every side affect possible and some blew through treatment with little side affect. Some have survived and some have not. I live in a little town that is seemingly overwhelmed with pediatric cancer diagnosis but when I try to clarify numbers with epidemiology, I find we are not higher than we should be statistically. Tell that to a parent and child whose whole world has been turned upside down. And now it is personal.

My grandson to be (my sons soon to be stepson) has been treated for a brain tumor since he was 6 months old, he is now 5 �. Multiple surgeries, countless rounds of chemo, radiation, a shunt..... Recently there has been increased growth of the tumor. We met yesterday to discuss the results of his latest MRI. I was able to meet with the team from his Children's Hospital. What an amazing group of people. I have interacted with them over the years, as a school nurse, but this time it is personal. After his appointment 2 weeks ago, they were given several options to consider. Radiation, oral chemo at home or a six week clinical trial at St Jude''s. Or do nothing.

An unimaginable choice.

They sought out pastoral counseling, and spoke with parents who have been down this road with their child. They wrestled with putting their child through intensive disease based therapy, knowing the end result will not change.

Or suspending treatment. Worrying they were giving up on their child.

These are young parents. She has been a single mom her whole adult life, with an 11 year old who has clearly been impacted by his younger brothers illness. My son stepped into this situation early last year and has been a bedrock for her. They were friends in high school and now have a new relationship as adults. But he, MY (32 y/o) baby, hurts as well. He lost his dad at a young age and really struggled from the time he passed the age his dad died at, until about a year ago. They have not had it easy as young adults. They have become a strong force and a united family.

And now it is going to change.

She (and he) have chosen to enjoy this little man as long as they can. And they had the blessing and clear support of the team at the hospital. They were reassured they can change their mind at any time, and they will ALWAYS be a part of the Children's Hospital family.

As a health care professional, I was moved by their empathy and understanding. As his grandmother, I am devastated, but strengthened, by their clarity and comprehension that this lil' guy has a limited time with us and it is up to us to give him the life a normal five year old.

We will move forward from here, with periodic visits to assess growth of the tumor. They will now start to consider end of life care decisions.DNR, POLST, MOLST...there are too many acronyms to be had in medicine. These are by far the hardest decisions any parent should ever have to make. I applaud the team for being forthright and not sugarcoating that this is an issue to be dealt with. And I applaud my son and his fianc� for not backing away from the difficult conversation and inevitable decisions. We will be strong as a family but,

There should never have to be a 4th option. EVER.

High School Nurse

2 Followers; 5 Articles; 42,343 Visitors; 3,764 Posts

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bell1962 has 30 plus years experience and specializes in family practice and school nursing.

8,540 Visitors; 345 Posts

Childhood cancer is one of the worst things imaginable in my opinion... and it is just awful how little funding it gets. There have been very few new drugs approved in the last 20 yrs to treat cancer in children even though it is the leading cause of death by illness in children. One in 300 children will be diagnosed with cancer by their 18th birthday. 23 children are diagnosed daily and 7 children die daily by the beast known as childhood cancer. The treatments are so harsh with both long and short term side effects, that even the survivors have to deal with life long side effects at times .There needs to be increased funding to change this! I personally know a few children who have been affected by cancer and "know" of several more through "Caringbridge.org". These children and their families are so amazing and brave and are forced to make decisions no one should ever have to make. I will pray for your family.....

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T.H.R.N. has 15 years experience and specializes in school nursing, home health,rehab, long-.

4,463 Visitors; 74 Posts

NutmeggeRN, so so sorry your family is having to travel this painful journey. Prayers for you all.

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JustBeachyNurse has 10 years experience as a RN and specializes in Complex pediatrics turned LTC/subacute geriatrics.

1 Follower; 1 Article; 99,237 Visitors; 13,944 Posts

What a difficult decision to make for a young family. I'm glad the hospital was clear that they can change their mind at ANY time. The courage to have make any life altering decision for a 5 year old is difficult to mount even with such wonderful support and resources.

I wish for courage and strength for you and your family in this most difficult time.

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xoemmylouox has 13 years experience.

1 Follower; 38,389 Visitors; 3,149 Posts

What a difficult and unfair desicion to have to make. Your family will be in my thoughts.

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NutmeggeRN has 25 years experience as a BSN and specializes in kids.

2 Followers; 5 Articles; 42,343 Visitors; 3,764 Posts

It has been an emotional week for sure...Mom is planning a celebration of his life party for next weekend. He was in the hospital on his last birthday and March 2 will mark five years that he has not lost the battle to cancer.....She is an amazing young woman with a very strong faith!

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NutmeggeRN has 25 years experience as a BSN and specializes in kids.

2 Followers; 5 Articles; 42,343 Visitors; 3,764 Posts

Well, we had the party and what a day it was! The local fire department came with several pieces of equipment and even a visit from Mickey Mouse!!! AND he got a ride on the new engine with the fire guys and Mickey!!!!

Tons of little kids from their church and his pre K class.

In so many ways, we are blessed!

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NutmeggeRN has 25 years experience as a BSN and specializes in kids.

2 Followers; 5 Articles; 42,343 Visitors; 3,764 Posts

And now it is almost September, go gold for pediatric cancer.......we will be honoring the memory of our hero. He passed away on June 16.....

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802 Visitors; 19 Posts

My heart aches for your family. I have four children ages 2,4,6,8. I can only imagine how the parents feel. I am taking this personal because I am a mother. There are not any words you can say to a parent to comfort them after they have lost a child. May he RIP. My heart and prayers are with your family.

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~PedsRN~ has 4 years experience and specializes in Acute Care Pediatrics.

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I am so sorry to hear about your loss. :(

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SassyTachyRN has 4 years experience and specializes in Peds, Oncology.

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So sorry for your loss

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