It has taken me awhile to process the time we spent in the hospital with Eli. I can't seem to really recollect a lot of it. I'm sure it's a mixture of being in shock added with days upon days of not sleeping or eating much. It is not comprehensive and will probably be disjointed.
And it's time for me to be able to use this writing in the present...to document the adventure and share our day to day going-ons and show everyone how Eli is
today..not to try to hash up the memories. My brain tells me to write what i can down and then to let it go. It doesn't want to hold onto this memory any more.
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Nothing about our time with Eli in the hospital was ok. We hated every minute. And we couldn't believe we were there...that this was our
baby. Both Rob and I have faced deeply sad things in our lives...both separately and together. But we could not have imagined how stressful being told our child...our tiny 13 month old baby has cancer could be. It's something neither of us have had a lot of exposure to. My mom and Rob's dad both have had patches of skin cancer... and although worrisome..not malignant. We both had a few friends who had battled more deadly versions. Two who kicked it's ass and one who was taken...way too early.
Other peoples tragedies can be a great tool and resource in life. They can change behaviors, make people more educated, more accepting. They can help with coping with ones own hardships. Knowing fear helps face it. Fear is the path to
the dark side, after all. Knowing all the hard and horrible things my family and friends have not only faced but taken on and defeated (or at least made peace with) has influenced my ability to be strong. Their ability to not completely fall apart, and often to come out the other side better...is awesome and inspiring. Life can really suck bad sometimes. Not caving to that is hard to do. And of course...I've seen the opposite too. People having something horrible happen to them or develop in them and they fold inward...sometimes letting their fear and pain take over so much that they are incapable of living and being productive members of society or...in the saddest of situations... choosing to end their lives. And I've seen something else...something negative happens to someone and they overreact to it. Making themselves consumed with drama and it, in turn, controls them.
Life is about your reaction to it.
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After our initial diagnosis in that ultrasound room I got really dazed and I felt claustrophobic. Because it was going to be a few hours before Eli could be admitted into the hospital I decided to go home and pick up some overnight things. They encouraged us not to leave...fearing our shock would get us into a car accident. Rob stayed with Eli but I had to get out of there. I had to be alone for a bit. I got home without any problems but the moment i walked into our living room I collapsed. The TV...DJ Lance and 'Yo Gabba, Gabba' was still on pause from when the pediatrician had called. All of Eli's toys were strewn about and everything was exactly how it was before we got this news. I lost my mind at that moment. The overwhelming desire to have our reality be a dream was all I could think about. I started to scream. I started to cry again. I sobbed and sobbed and sobbed. Maybe for 20 or 30 straight minutes....i don't remember. I wanted to break something. 15 years ago I would have. But now all i could do was sob. At that moment I've never felt so helpless in my life. Nothing I could do could change the situation...and we didn't' know what the situation was even...all i knew was that my 13 month old probably had cancer. What. The. Fuck.
Sitting there at that moment, clenching Eli's blanket and stuffed animal...i thought he was going to die. My mind convinced me for 30 minutes...or however long i cried... that he was already there. That it was all over. Our only child was going to die before he learned how to walk. Before he learned how to say 'mommy'. My sobs were out of fear that reality was going in that direction. Nothing. Absolutely nothing in my life prepared me for that feeling.
But reality doesn't change just because you want it to. You have to face it. Nothing gets better until you stand in reality and say, "Ok. How do we handle this? How can we move forward?" Living in delusion is not an option for me. Even if reality is grim. I don't want bullshit. I want to know the facts.
That thought eventually crossed my mind and when Rob called telling me a room had opened up and Eli and he were heading to it, I picked myself up and grabbed our toothbrushes and some sweat pants and drove back to Doernbecher's. We were going to beat this shit...whatever it was.
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10 South is the cancer ward of Doernbecher's. It's a locked unit and you have to use a phone outside in the hallway to call in to have them open the doors. Immediately upon entering you have to wash your hands with soap and water. Every time.
I found my way to Eli's room. They were waiting for me and I was briefed on how things worked...shift change at 7 AM and 7 PM. Meds at 9 AM and 9 PM. Playroom to the left and kitchen across the hall. Sadly we were immediately put on isolation because of Eli's Hand, Foot, and Mouth episode from the week before and we were told that Eli had to stay in the room and if we left we would have to go immediately off the floor. Any food that came into the room could not be taken back out. All visitors, including all nurses and doctors, had to be in full gown and mask. Everyone but our family.
Eli was eating and drinking just like normal so they kept him off an IV that first night. A team of doctors came in and explained that more imaging would have to be put off until the next day. All three of us slept on the "couch" in the room that night...although i don't think Rob or I actually slept.
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| Waiting for information on the first night in the hospital |
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| Eli being a good boy |
The next day more doctors, more nurses. I was exhausted...and starting to mentally fade. A cat scan was ordered for Thursday morning as he couldn't be fit into the schedule for Wednesday. It would verify if indeed surgery needed to happen. They team of doctors already seemed sure it was necessary but needed to know if it needed to happen immediately or if he could be scheduled for a week or two. That night they put him on one IV. He was given some nasty chalky substance that would help "dye" his insides for the cat scan. We mixed it with apple juice and he drank it right down. No complaints. He is such a good boy.
The next morning Eli was masked and because he was hooked to an IV i held him in my lap while Rob pushed us in a wheelchair down to the imaging room.
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| masked |
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| Going to imaging |
Eli was given some sort of cocktail that make him really calm and it worked. We were given xray aprons and I was asked if I was pregnant. I laughed. The view from the imaging room was amazing. It was an unobstructed view of all of Southeast Portland. Our part of town. I never knew I'd see our neighborhood from that view. I looked down and Eli was obviously drugged up. He was staring at a Spider-man sticker that had been given to him. Staring through it really. And then...very quickly...he was pushed into the doughnut hole of a machine and then we were done. He rocked it again. Not a peep or a squirm. Have i mentioned what a good boy he is?
And then we waited....and waited....and waited. Much like we had been doing for days now. And then...sometime in the early afternoon...the entire team of doctors and nurses stopped by.
They information was overwhelming...but at least we were moving forward. "The tumor is inside the kidney. It's large. He will need surgery. Immediately. It's scheduled for 3:00 PM tomorrow. It's an add on surgery so you are lucky in that regard because it's Easter weekend. We still think this is a Wilms tumor but we will not know until after surgery and until after pathology is run on the tumor. He will lose his kidney. We will also not know what stage the cancer (if it is indeed that) is in until surgery...and absolutely until pathology comes back. We do not think it's spread but some imaging shows some signs of the possibility. We will know after surgery. We won't know if the tumor is favorable or unfavorable until pathology. Because it's a holiday weekend we will be lucky to get pathology on this before the middle of next week. Welcome to hospital time."
and then a pause and gently,
"We will figure this all out. Eli has a very good chance judging by what we see on his imaging. We will help you learn about Wilms and about the surgery, and chemo and about living with one kidney and life after. It's all very doable." And somehow...their tone made me almost believe them.
The waiting had just begun...
....but at least we were starting to get answers.
