Heather Cole--Ten Day Cancer Scare (1)

Heather J Cole with Rhyse Addyson Cole


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 I am being seasoned by the many challenges of Noonan Syndrome, wandering, tripping and grasping for branches along the darkness of my journey. So many days are full of joy and celebrations of milestones, and every day family life. But there have been several, dark days where I have faced terrible fear that seeks to dismantle the ever-changing 'normal' we as a family so desperately strive to attain.

May 29^th, 2013 was one of those dark days…

Fevers
Rhyse had been having fevers every day for seven days. Though a nasty, odd lung virus had been weaving its way through the family, none of us had experienced fevers for more than a day or two. Further, Rhyse had only had his new appendage (gtube) for four weeks. It was certainly possible he had an infection in the stoma. On day seven I called Rhyse's pediatrician, Dr. S, and managed to talk my way into an appointment that day: not an easy task with the newly installed nurse line where I am no longer "Rhyse's mom". Instead I am a complete stranger, treated like a paranoid mom who doesn't know how to handle a fever. With teeth clenched I calmly educated the nurse on Noonan Syndrome and how it affects Rhyse, and that, "no, Tylenol is NOT going to be the cure all. And no, Rhyse can't wait three more days."

A few hours later, with a screaming one year old in my arms, I walked into Dr. S's office. She took one look at him and she knew too, something was amiss. And even if it was a virus, not an infection, it was overtaking him and he needed medical supervision, as usual thus another trip to the ER. This trip to the ER would be no different than all the others, I thought.

As I left the doctor's office I called my husband, Jon, and let him know he was going to have to leave work early to be home when our two girls get off the bus at 4pm. Dr. S had requested he stay overnight for observation-- no matter what.

 
Not Just Another ER Visit 

Being very hopeful that our hospitalization days were now off the radar for at least the summer I no longer had my "just-in-case bag" packed. Because of this I had to stop at home for maybe five minutes to throw some overnight clothes in a plastic bag. I didn't even entertain the thought of more than a one night's stay.

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, signifying where to park for the Children's hospital (Spectrum, the general hospital is attached to the Children's Hospital). He knows the sights, the smells, and the bustling chaos of the hospital. He knows that men and women who hurt him wear scrubs and carry stethoscopes. His fear is evident: clenched hands, rigid arms and mottled body. He begins to cry from the get go and begs, with his hands and eyes, not to be taken out of his stroller. On any other occasion, anywhere else in the world, he would rather be held. But in the hospital he clings to his stroller for dear life, finding comfort in the idea that if he's buckled in the seat no one is going to hurt him. To this day it pains me to pull him out of his place of refuge to be poked, prodded, and squeezed, knowing he's in utter panic.

After a quick weight and height check we were escorted to a room. It's an odd feeling when you walk down the halls of your Children's ER and realize you know your way around, you know each piece of children's wall art before you see it, and you recognize most of the staff: and they recognize you.

I looked up at the clock as I scooted onto the all-to-familiar, uncomfortable gurney with the thin, plastic mattress made for little butts. The clock showed three o'clock in the afternoon. I knew it was going to be a long, hard day, and an even longer night. I had no idea this one day would turn into yet another tailspin of emotions, confronting the kind of fear I never even imagined would again be placed before me.
As we muddled along through each phase of ER protocol Rhyse became increasingly inconsolable. By the time we had arrived at the ER his morning dose of Tylenol had long since worn off and any control over the fevers it previously held was gone. Not wanting him to be in any more agony than necessary I began pleading with everyone who came in the door for Tylenol—I was told he had to wait for the IV. Each time we were alone in the room I was tempted to give him a dose from my diaper bag stash. But I knew in the long run he would end up with a double dose, so I held off and tried to keep my nerves in check.

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 best donor. But after a year and a half of donations the veins can no longer hold a flush, and I warned the nurse as such. Nurse one tried anyway. After nearly twenty minutes of fishing for a vein in two, left arm sites and watching them blow, Mr. Nurse number one gave up. I reminded Mr. Nurse Rhyse was a hard stick. I think he was actually relieved I wasn't upset with him for failing: most nurses do. He bandaged up the two holes and called nurse two from Peds Transport for help. When nurse two and her helper arrived they were confident they could "save the day". I wasn't impressed with their enthusiasm. We needed skill, not pride. True to form nurse two and her helper were overwhelmed with the challenge and gave up as well. Now two more sites were bleeding, and two more kiddy bandages were applied.

At this point I noticed Rhyse's blood was unusually thin. I knew from experience his platelets must have dropped to about 50k. Only three weeks prior they were 93K, and had been holding in the 90s for nearly a year. I didn't say anything to the nurses. I have also learned that if I come across as too knowledgeable, nurses get offended. I just tucked that notion in the back of my mind and concentrated on cuddling Rhyse throughout the ordeal, though by this point my nerves were shot and so was Rhyse.

With continued screaming and still no Tylenol I was getting overwhelmed with emotion. I held Rhyse close to me throughout every attempt, but no amount of mommy love can take away such fear and pain. I can't even say, I've 'been there too'. I haven't. I can't understand. I can only hold and love.

When nurse two failed a NICU nurse was called in. Rhyse was now beyond the point of no return. Each time someone slid open the sliding glass door and walked in he pointed at them, looked up at me with eyes filled with fear, and shook his head no. That was the first time I had ever seen him put two communication pieces together: and the last time. And when they stepped towards him, he screamed for all he was worth.
NICU nurse three spent an inordinate amount of time trying to find a vein that looked straight enough and large enough for an IV. After much fumbling she made her two attempts, and failed. Now we were up to six bleeding sites tightly covered with gauze and daffy duck band aids.


Nurse one came back on the scene asked if I knew anyone in particular from Hematology who could help. I told him, "Mary". Historically she was the only nurse on the tenth floor who was successful during his twice a week platelet transfusion days. Nurse one called Hematology, but Mary wasn't on the floor that day. Another nurse came in her stead. She tried. She struck out. She left two more holes to bandage.

Nurse one now at his wits end got the OK to give Rhyse Tylenol orally. Finally. I still don't understand why someone let two hours lapse before agreeing but those aren't answers you get in the ER.

After two and a half hours of IV attempts Rhyse still needed an IV line. Honestly I don't remember where the fourth nurse came from. The first stick was a bust, but the second—in the temple—finally held the flush; at least for a few hours. The nurses left the room leaving behind trash, a bloodied blanket, rolls of medical tape and used scissors sitting on the gurney. I cleaned up after them, as usual.

With IV placed, Tylenol administered, and blood draw sent to the lab the ER doctor arrived with his game plan. Mind you it was now 6pm, three hours after arriving and both Rhyse and I were beyond exhausted. I don't remember the doctors' name. And it doesn't matter. This ER doctor lit up when he saw Rhyse had Noonans. Early in his career he had interned with Dr. Noonan herself. Finally a doctor who didn't have to look up Noonan Syndrome on wikipedia before coming into the room! By the way doctors, if you want to solicit complete distrust in a patient's mom, just keep telling them that you had to look up Noonans on the internet! At least pretend you know.

DR. ER

Dr. ERs plan was to start eliminating possible issues from the top. He ordered a chest x-ray for pneumonia, CT scan for possible stoma infection, and antibiotics for just in case. In truth neither I nor the ER Dr. believed anything would come of the tests. Rhyse probably had a virus that overtook his fragile, petite body and needed more powerful drugs than I could give him at home.

After a time transport arrived and wheeled Rhyse and I to the x-ray room. Just the movement alone distracted Rhyse and he began to calm down just a stitch. By the time we were in the room he was interested enough in his surroundings that I was able to put him in the x-ray chair without any fuss. The tech quickly took two pictures and then wheeled us back to our tiny, stale room with the ugly pastel curtains with lines and circles.

Within minutes Dr. ER had the computer images in front of him, and a report from the tech that said, "slight thickening in the lungs possibly due to lung virus." Regardless pneumonia was ruled out—as expected.

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 even know there was going to be more dye in the first place. Doctor patient communication in hospitals is rarely up to par. To complicate matters no one wanted to be personally responsible for the dye push if the dye caused Rhyse's skin to burn. I assured Mr. Nurse that I would not blame anyone if there was a skin reaction. Rhyse's immediate health was more important than suing a hospital over a skin irritation. Fortunately he took the cue and volunteered to do the push. I was more interested in getting the CT scan of his belly than fearing what might be.

When we finally arrived in the CT room it was late evening. We had been in the ER for several hours and I was wishing we were already in Observation where I could cuddle with Rhyse and try and get some much craved for sleep. Having been assured the CT was a quick and painless process I looked forward to getting it done and getting the results.

But easy was not to be. As Mr. Nurse was flushing the dye into the right side of Rhyse's head his head began to balloon. Sure enough, the vein—the eighth attempt—blew. Thankfully the tech realized the situation wasn't going to get any easier. He told me to hold Rhyse's arms up while he moved him in and out of the machine, and we will get what we get! Thankfully the scan was successful.

At this point Rhyse was so exhausted he was nearly limp in my arms. His eye lids were lobster red from lack of sleep, and his body pale from trauma. He needed sleep. I needed sleep. Somewhere along the line he passed out on my lap while I stared at those pastel colored curtains that covered the glass sliding door to the room.

While we were waiting the test results all the shifts had changed, giving us new nurses and a new doctor. With the shift change came more vitals, more questions, and more and more waiting. The closer the night drew towards midnight the louder and more crazy the ER became: it's a zoo in the middle of the night!

Seven hours after arriving to the ER the night shift doctor came in and greeted us. I was beyond the point of being able to process anything and just needed peace and quiet to smooth out my nerves, and allow Rhyse some undisturbed rest.

I was not prepared for what the doctor had to say.

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