Medically Complex and the Stories of Our Lives

Back for Biopsy Late Monday morning my in-laws had arrived from Indiana to stay with our daughters while we were once again contained in the hospital with Rhyse.  Thank God for family. Checking back into the hospital is no easy task when you had just checked out three days prior.  Rhyse was frantic and unwilling to be taken out of his stroller, screaming and shaking from fear.  The minute we arrived on the tenth floor he was ready to fight tooth and nail to get back on the elevators.  He pointed at the doors with all he was worth, and it was a wretched feeling pulling him in the opposite direction. By the time we arrived on the tenth floor the entire staff had heard about Rhyse’s bout with the IVs a few days prior, and everyone was nervous about repeating the incident. I did, however, take great comfort in being on the tenth floor—my ‘second home’ since Rhyse’s birth.  If there’s anywhere in the 12 story building I feel most comfortable and encouraged ...

Weekend Home Saturday morning was an odd time.  I had two different documents to read and sign regarding cancer research, and donating the biopsy so others could use it to ‘gain more understanding’ of Neuroblastoma.  Cancer: I could hardly wrap my brain around those words.  Rhyse’s doctors were assuming he had cancer and someone already wanted a piece for research. I wanted to keep things as light as possible for the whole family’s’ sake.  Walking around in a trance wouldn’t help anyone, especially not us parents who knew the gravity of the situation.  So with this in mind I decided we would have an hour in the morning where each parent would take a child and do something; an impromptu date. I took my six year old daughter, Maggey, out for breakfast and then just drove.  She kept asking me where we were going, and I really didn’t know.  I just picked a direction.  As we were cruising along a familiar route I spotted an estate sale s...

Cancer, 99% Certainty In a very kind, compassionate voice she relayed the news.  The CT scan had revealed a large, long tumor along his spine and sympathetic nervous system: “homogenous but abnormal posterior mediastinal soft tissue density.” We were to be admitted to the 7 th   floor for the night and begin the day with an MRI, more blood tests, and a urine catch.  “Don’t worry until you have to” were her words.  Yea, ok.  She slipped out the door and tears slipped out of my eyes…I was too tired to think clearly, or keep my wits about me.  It was 1130pm and my emotions were already worn to the bone.  I was alone and tired and I had no resistance to fear. When the doctor walked out of the room I melted.  I was suddenly thrust back to the day Rhyse was born, October 17 th , 2011 when an attending doctor told me Rhyse was “probably terminal.”  I never allowed myself to go back there emotionally, nor did I entertain the idea that ...

The Dreaded CT Next on the list was a CT-scan.  What an ordeal that is.  The nurse came in the room with two, monster size cups of water laced with dye to slowly administer via Rhyse’s gtube.  I sucked the fluid up into one of my 60 ml syringes and ml by ml pushed each cup of water into his stomach, over the course of two hours.  At 7pm he was finally eligible for the scan, but no one came to get us.  After nearly an hour we were still waiting. If I had the energy I would have tracked down a nurse and inquired.   But I was too tired, and didn’t want to leave Rhyse alone on a gurney with side rails so large his entire body could roll through! Finally a nurse came in saying he over-heard someone on the phone discussing Rhyse’s CT.  Apparently the problem was IV number 8, the scalp IV. Up to this point no one had experience administering the CT-scan dye into a scalp vein: they didn’t know if there would a negative reaction or not. I didn’t e...

Calling Nurse Number Four Throughout Rhyse’s 20 months of life he has had numerous platelet transfusions, more blood draws than I can count, three bone marrow aspirations, a gtube placement, several sedated EKGs, and of course a sprinkle of unscheduled ER visits and nineteen days in the NICU. IVs are a ‘normal’ part of his life. But Rhyse’s body isn’t so obliging. Between Rhyse’s small stature, petite bone structure, hypersensitivity to pain, and veins as curly and winding as his gorgeous, red hair IVs are a terrifying experience.  What’s more, finding a nurse who can stick a vein and get a successful flush in less than three attempts is next to impossible. On this day Rhyse endured the worst experience with IVs to date.  Already screaming from the effects of a high fever, complete with shivers and tremors, nurse number one scanned his limbs over and over,  careful to choose the best site; his left arm.  Historically Rhyse’s left arm has indeed been the b...

Not Just Another ER Visit My routine trips to the ER are not without stress. Rhyse is once again sick, uncomfortable, scared of the personnel, and for whatever reason we are usually arriving in the middle of the night when all sense of normalcy or social appropriateness is severely lacking!  If that isn’t enough with every visit I have to donne my educator hat, always answering that proverbial question, “so what does Noonans mean medically?” or “what are his diagnoses?” or my favorite, “how do you spell that?” Are you kidding me? All that information is in his digital chart! Why on earth do I have to spell something that’s right in front of them? Okay, so I am being cynical.  But truth be told, Noonans seems more like a rare, tropical disease by the way many medical professionals ask their questions! I’ll get off my soap box now… Rhyse is 20 months old. He knows where he is the second we enter the parking garage with its green and orange painted walls, sign...

I will never forget what it felt like to walk in darkness so dark my mind could not grasp up or down, right or left, forwards or backwards. With hands outstretched I felt for every limb, every leaf, trying to navigate through brush and around trees without smacking into or tripping over them.  I was terrified.  I knew that if I got turned around I would get lost, or much worse: I would come across an animal that was only too happy to have me for a late night snack.  I hadn’t lived in East Africa very long, and those National Geographic documentaries I had seen as a youngster played in my mind.  Most kids in the boarding school had lived overseas for most of their lives and didn’t think twice about wandering around in the endless blackness of an African night. But I was 14 when we moved to the DRC: I was an unseasoned MK. As insidious as sunburn on a cloudy day the process of ‘seasoning’ takes place whether you welcome it or not. In many ways I feel like ...