I am a recovering people pleaser. I say “recovering” because this whole cancer journey of ours has taught me that being a people pleaser isn’t who I want to be and most certainly NOT who I can be. As a parent, my daughter’s battle is my own battle too.
November 16, 2016, we were whisked away into a whole new world. One in which I quickly learned that I needed to know the ropes in even though there were experts in the room taking care of my child. At the end of the day, only I KNEW my child best, and only I KNEW when her limit was hit or the pause button had to be pressed. Human error is always at work because, well, we are human, and two sets of eyes are better than one. Let me explain further……(the following is to help guide you on your journey— this is by no means a criticism of the expertise and skills of medical experts).
A week after being released from our initial hospital stay, we were admitted again for high fever. As we were being transferred to the Oncology floor of the hospital from the ER, the ER nurse was setting my daughter’s IV pole up while I was placing our bags in the closet and getting a few things settled. The oncology floor nurse came in just about the same time the ER nurse was finishing. When the ER nurse stepped out, the Oncology Nurse looked at me and said, “Did she just touch Emmy’s line and connect her to fluids without gloves on and without cleaning the connection point?” Oh did my heart sink deeply into my stomach, because it was the first time I turned my back for a brief moment trusting that the person who is supposed to be an expert in the room did something improperly that could have caused great harm to my daughter if her blood counts were in a low place. After further determining she did in fact connect the line to fluids after touching the hospital bed in transport, did not put gloves on, and did not scrub the hub of where the two met, the oncology nurse made sure to file a report as to see to it that no other child (with a compromised immune system) have an error occur like that again.
Fast forward to another night in the hospital when our precious baby had been held down and poked 4 times in one day. After another blown IV and her blood counts needing to be checked, a nurse came in and was ready to do a finger stick as an alternative to get the blood. We had tried finger sticks, the same this nurse was about to try, 3 separate times before and it never ended well: screaming and blood clotting quickly, making the collection of blood unreliable for reading. Given our past experience, this particular nurse came in and said, “I’m the king at finger sticks, it will work…”. I was so scared to say NO. I was new at all of this, intimidated by the situation, and this person sees more of this on a day to day basis so they must really know what they are talking about. I thought, “I can’t push back.” So I proceeded to let them warm her finger and try another needle stick. The result was not good. Thrashing, screaming, blood flying all over except for in the vile that it was to be collected in. It was in that moment, holding her down and watching her struggle again still not getting what we needed, that I decided I wasn’t going to just sit back and accept what others may think is best. I was so angry with myself for NOT going with my gut — my mom intuition. Enough was enough — I know my kid. I know what she can handle and I will speak up for what is BEST for her even if that means pushing back on the “trained experts.” (she now only gets peripheral blood draws, because that is what works best for her)
There was another time when Emmy was receiving a spinal tap, in the “procedure pod” of our hospital on our oncology clinic floor. Emmy was receiving intrathecal chemo (a procedure where they sedate the patient and replace an amount of spinal fluid with chemo) and after attempting sedation with gas we had to move to IV sedation because we could not get her relaxed enough. I realized, as I was looking at her vitals on the monitor, “alarms off” was displayed on the screen. Although there was a nurse monitoring her and recording her vital stats, I was concerned that all alarms were turned off because had her heart rate dipped or oxygen level dropped, no alarm would be sounding to alert all in the room. I was NOT OK with that. Those precautions are put in place because sometimes nurses look away — or get distracted. Things can happen (we’re human after all) and those tools are there for a reason. It was from that day on, for any further procedure, I politely ask, “please make sure all alarms are turned on.”
You see, some days, having felt like you have been to hell and back from the suffering a cancer journey can bring, your tolerance for mistake, error, or the thought of your child having to experience ANY more adversity can be too much to handle. Advocating on their behalf, or interceding as a way to help prevent further affliction is a vital role parents can play in helping see your child through their fight. Now, there is certainly a right way and a wrong way to go about advocating for your child. It should always be handled with RESPECT and GRACE. I am thankful that we are treated in a hospital where both the Dr and nurses agree that the parent relationship with them and the patient is an invaluable partnership for many reasons. That said, here are 3 ways I have found I have needed to step out of my comfort zone, stretch in ways that sometimes felt uncomfortable but always for the greatest good of my child, and in respectful partnership with the staff …….
Speak Up- I have learned that it is absolutely OK to say, “please wash your hands again after touching the sink,” or, “please put on a new pair of gloves” after they have touched one too many things before reaching for the needle. Or, “Please clean the hub with alcohol again because that wasn’t the full 15 seconds.” You see, little short comings like these can result in infections and a whole slew of other issues (statistically proven) and for us I was not willing to risk it. I’ve learned that my personal comfort needed to be laid aside in order to make sure my daughter’s well being was protected. ESPECIALLY when her counts were low.
Ask Questions- Allow yourself to step out of your comfort zone of asking too many questions for fear of looking stupid or being intimidated. At the end of the day it’s better to be safe than sorry. If you don’t understand the FULL picture of what is happening, make sure to ask questions until you do. The medical world can be an incredibly confusing environment but they are obligated to give you as much understanding (not just information) as possible.
Trust your instincts- God put them there for a reason. The Lord saw it fit for you to be your child’s protector, nurturer, father/mother. You know your child better than anyone and at the end of the day YOU CAN, ARE, AND NEED TO BE THEIR VOICE …. THEIR ADVOCATE.
I read this quote the other day and just loved it..."Bravery is not the absence of fear. Bravery is feeling the fear, the doubt, the insecurity, and deciding that something else is more important." Your kid is worth stepping out of your comfort zone, be brave, advocating for them with confidence wrapped with grace.