Sunday, May 6, 2018

Sunday, May 6, 2018

Tonight's picture was taken in May of 2009. Pictured with Mattie is Tricia, Mattie's favorite HEM/ONC nurse. That day, Mattie attended the Mattie March, an event his support community held for him in his honor. To March was designed to help raise funds for Mattie's care and to also show him that friends and family were united behind his recovery. 

Given that today is National Nurse's Day, this seemed like the appropriate photo to post. I should also mention that Tricia and her entire family attend our Walk every year. So she continues to play a vital role in our lives. We met Tricia the first week Mattie had chemotherapy. I experienced the beauty of Tricia right away, as she understood the impact of this diagnosis on all three of us and had no problem on several occasions advocating for our psychosocial needs with the care team. 


Quote of the day: Nurses dispense comfort, compassion, and caring without even a prescription. ~ Val Saintsbury

It's National Nurses Day! Peter and I would have been LOST without Mattie's amazing nurses. Nurses are the true deliverers of care, and I don't mean only medical care. They are the first responders to psychosocial issues and provide emotional support to not only the child but the entire family.

If you or a family member have been ill in any way, then you know the CRUCIAL role a nurse can play in your treatment. It is my hope that Mattie's nurses always know that they are FOREVER LOVED and appreciated.

Here is another photo of Mattie and Tricia together. Mattie loved to play on the floor of his hospital room. That did not stop Tricia from doing her job..... she got right down there with him!

There are many Mattie and Tricia stories, but our favorite, maybe when Mattie screamed across the PICU for Tricia. Tricia came running over thinking Mattie wasn't feeling well, only to find out that he wanted to tell her something and that something was ... I love you!

In this photo, Mattie was on a hospital gurney being transported to a procedure. Behind Mattie, is Linda (Mattie's child life specialist) and alongside Mattie (in pink) is Debbi (Mattie's sedation nurse). 

I am not sure Mattie and Debbi had the best of relationships. Mainly because for Mattie, Debbi symbolized a pending procedure (in other words fear). But to Peter and I, Debbi was a God sent, because she understood Mattie's fears and anxiety and was there to safely sedate him for most, if not all, procedures and scans.

Next to Mattie is Ellen. Ellen ONLY works the night shift. She was our favorite night nurse. Extremely competent, effective, and compassionate. Ellen went through some difficult times with us, as it related to Mattie's first oncologist. An oncologist who decided to give Mattie a placebo instead of pain medication, to illustrate to me that Mattie was just seeking attention. I can't tell you how unethical that was and how uncomfortable Ellen was to follow this order. Needless to say, the placebo DID NOT work and pain meds were necessary. 

This is Miki. Miki is a delight, very competent and gentle. In fact, early on in treatment, Mattie wanted to go outside while hooked up to an IV. Going outside put Mattie him three floors down from the pediatric units. Despite that inconvenience, Miki understood the importance of feeling more normal and going outside. So she set an alarm on her watch and came down to check on Mattie in intervals.  

Next to Mattie is Sarah Marshall. Sarah Marshall is a childhood cancer survivor! She told us this early on in Mattie's treatment, to let us know two things..... miracles happen and that she understood personally what we were going through. Sarah Marshall, I nicknamed, our Angel of Mercy. She heroically helped us the night Mattie was dying. Our room looked like a battle field lined with syringes of pain meds. She couldn't administer them fast enough, that was how horrific this five hour death scene was.

Next to Mattie is Kathleen. Kathleen referred to Mattie's left leg as "Curious George." Because like the story book character, Mattie's left leg (the only appendage that was cancer free and therefore wasn't operated on) had a mind of its own and could get into trouble. While nurses would examine him, he'd take that left leg and use it like a hand.... checking out things in their pockets. The funny part was one day, Kathleen put gak (kind of like putty or clay) in her pocket, to test Mattie to see if he would find it. Sure enough he FOUND IT.... he got a foot full of gak and loved it. 

This is Katie. Katie typically wore a grey sweater with a belt when she was cold. Which was often, since hospitals are kept cold. Mattie absolutely loved to take his left leg and pull the sweater belt out of the loops. In fact, on several occasions he was very effective and completely removed the belt without Katie knowing it. Katie also wore lovely red nursing clogs. So I would call her Dorothy, like in the Wizard of Oz. 

This is Erin. Erin left the unit early on in Mattie's treatment. But she is a peach. She was the one who taught me how to initially do a dressing change of Mattie's central line (where he received chemo) and I will never forget the nights where Mattie was besides himself. We got him to refocus and calm down by drawing things for Erin. He drew her a tree, which she had on her refrigerator for a while. I also recall Erin seeing me one time in the hallway distraught. She literally sat with me and rubbed my shoulders. NOT in her job description, but that is the beauty of nurses. All of Mattie's nurses went above and beyond. 

This is Laura. Laura entered our lives when Mattie was several months into treatment. Despite not starting with us from the beginning she was equally lovely and very effective. In fact, Laura helped me on numerous occasions when Mattie had a bad and severe reaction to his experimental immunotherapy treatments.