is set a part as a special thank you to Doernbecher Children's Hospital for Hunter's care. I do this because I don't
want the wrong message to come across in any way, shape, or form that I don't recognize the excellence in care that he received
from everyone at the hospital.
life is tough...and of all the people that can sympathize, it would be hospital staff. A lot of times I write or
talk about the difficulties that are involved with this issue of hospital life. Please, understand that it's just plain
difficult to go through it. There are so many individual needs, personalities, life styles, communication styles, education
levels, experience...(need I go on), that it's extremely difficult to make extended hospital stays an easy ride. Being
in the hospital is generally a bad thing, not pleasant to go through... and then to be doing it with so much on going emotion,
and fear, pressing issues, and concerns, it's almost damned to be a bumpy, rough, experience.
So, I need
to take a moment to give praise to so many of you that not only did your work with accuracy, but also were sensitive to our
family needs and went above and beyond to tune in to us (and Hunter) and do whatever it takes to bring some peace into such
a terrible, horrible, difficult, and trying situation. This was the case, more often than the cases of struggles that
I mention through out this website. I really feel that regardless of some tough times, we were cared for in excellence.
What I hope
to communicate and accomplish most of all as I describe the worst of times and the best of times are these two points:
- When a parent submits their child
to the care of medical personnel and treatment, a huge shift in the parent / child relationship changes dramatically.
The parent who was once in control of everything having to do with that child's life and well being, has to let go and trust
(in strangers -although professional strangers) for the care of their child. The Doctors are included in the direction
of that child's life and they have powerful input. Autonomous parenting doesn't exist anymore. The Doctor's advice
and decision weigh just as heavily as the parents decisions. It's hard to be thrown into this relationship
of sharing parenting (decisions and directions about the child's life and well being), including such powerful influence over
your child's life, trusting, and having faith. This is so hard to do with a stranger, even though the
stranger is a competent Doctor. It's so hard to place your child's life in their hands for a time, no matter how
long, because they can provide in ways that even as the parent we can not.
- Parent involvement is so important
in patient care. Sean and I were involved in every detail of Hunter's care. We were in the hospital with
Hunter for every treatment or procedure and we acted as his voice and representative. Our senses were intensified toward
him and we constantly advocated for his individual needs. We also oversaw all of the medical decisions, treatments,
and procedures. We audited every medical decision and treatment. We were like hound dogs sniffing out and
searching for error or confirming accuracy. We were thoroughly vigilant, always seeking education and understanding
about what was happening to him, always appraising the Doctors in detail about what might be going wrong with him, and
we never ceased to campaign for even the small, unique needs that might make Hunter's life tolerable while he was going through
such misery. I believe 100 % that this is why Hunter is here today. Parent involvement and care is just
as important in sustaining the life of the patient as the doctor care and treatment. My heart still breaks for the
children at the hospital who are going through this alone. Babies that are sick, or getting chemo, and they crawl around
their cribs alone for hours and hours in-between treatments because the parent chooses to go to work (or whatever) rather
than be there. And skinny, skinny, skeleton, of a child left, with no more twinkle in their eye, left alone in the hospital
bed day after day with only a button to push if they want the channel changed on the TV or have some sort of need. I
even saw one very frail (nearly dead looking) little boy go into surgery and out again in the same day without a parent to
give him kisses before or after. I hate it. - As a parent, I am willing to loose everything... the job, the house,
whatever, it doesn't matter when you only may have a few more moments with your baby. My heart breaks.
So, who is there for these little guys? Many times
it's the nurses who spend a little extra time to cradling baby before they have to tend to the next patient. I
saw that also. Please, even though, we went through some difficult times and I have stories of complaints,
please, don't think that I am ungrateful for a split second for all that you do.
I have so much respect for the 10 N staff at Doernbecher.
You have the most difficult job in the world caring for such needy little ones. The strength, love, foresight,
and passion for healing that you have is incredible. A powerful kind of love is demonstrated many times when the same
nurse or doctor that administers a chemo treatment (which is a lethal injection to kill) then, in turn, also administers care
that brings the patient back to life the following week or so, is just incredible to me. And you guys do this with so
many, and over and over again.
I pray for all of us, for a cure. ~ That
through science and medicine that there will be a better cure for cancer... a better treatment. Chemo is brutal.
But, I thank you for your strength.
Hunter didn't hunt cancer down on his own.
He wasn't the one and only warrior. You were all in hand to hand combat with him. I bow in reverence to all
of you who choose to stay in the trenches as each little hero passes through your clinic doors, walks (or rolls in wheel
chair) down your hallways, sleeps sweetly in your beds, and then moves on to grow and thrive to be strong and healthy
representatives of your passionate love, strength, care, and faith.