This is the last picture I took of my boys while our family was still "normal", before we had ever stepped foot on the 7th floor...just hours before our world exploded. It was Thursday, my favorite day of the week. We had returned from a totally fun and relaxing annual family vacation to San Diego, five days earlier. We had come home, celebrated the 4th of July, we were getting ready to welcome our newest family member, my nephew Johnny, into the world and we were excited for the rest of the summer adventures we had planned. We had some major dust storms that week and everything in the back yard was covered in a fine layer of dust. I put the boys in their swim suits and set them loose on the porch with a hose to clean everything off, then cleaned them up and put them in their jammies early. My family was over for our regular Thursday night family dinner. Wes was showing off for my sister-in-law Jaime and was throwing himself to the ground. This made Ellie, who was 9 months old, belly laugh, which made Wes do it over and over again. Nate decided to get in on the action and said, "Jaime, watch THIS!" as he flung his little body towards a small, square vinyl ottoman that I had used to prop my feet up while nursing all three of my babies.
He immediately winced and cried out in pain. I scooped him up and hugged him, assuring him that he was ok and asking if he needed kisses. He quieted down but was clearly not comforted. The pizza we had ordered, arrived and we started to sit down to dinner. Nate did not want to sit at the table and eat pizza. He wanted to lay on the couch and suck his nuk and hug his Softie. As we sat down to try and eat some dinner Nate just wasn't comfortable. He began writhing on the couch. Chris and I took turns trying to comfort him and eating. We tried to get him to pin point where he hurt, he kept pointing to his tummy. We just couldn't figure out what was wrong. He really didn't hit the ottoman that hard, at first we only thought he cried because he knocked the wind out of himself. Clearly something more was going on, but what could it be? Did he hurt his back? Being pharmacists, Chris and I have just enough medical knowledge and training to diagnose most common illnesses and injuries. This just didn't make sense to either of us. I left a message with the on call pediatrician while Chris took Nate to our room to try and calm him down. Then, Nate started vomiting...not a lot, but enough to know that something was just not right. We hadn't heard back from the on call doctor yet, but I knew at that point that there was nothing they were going to be able to tell me that would make me not want to take Nate to the ER. We quickly got ready and Chris and I were both able to take him while my mom and Linde, who were already over for dinner, stayed with Wes and Ellie. The pediatrician called as we were walking out the door and agreed that an ER visit was best. Chris drove while I sat in the back of the van with Nate and tried to comfort him...he threw up again on the way to the ER.
We parked and carried Nate in to the ER at Scottsdale Healthcare Shea. They prioritize children and got him back to a bed right away. He seemed much more comfortable as soon as we were settled in at the ER. We distracted him as he toughed out getting an IV. They drew blood and we waited to talk to the doctor. Chris and I discussed a CT scan with the doctor at length. We didn't want to expose Nate to any unnecessary radiation...but we wanted to know what was going on. The doctor couldn't quite figure it our either. He said that it was unlikely that he had ruptured his spleen, unless there was an anatomical abnormality. Ultimately, Chris and I decided a CT scan was the best way to rule out any problems. Nate was a very good boy and laid very still for the scan. Then, we played and read to Nate while we waited for results. It was almost midnight by now, but Nate wasn't falling asleep with all the excitement. We truly believed this ER visit was a "better safe then sorry" visit and we should be headed home to our beds soon.
Nate finally dozed off and Chris and I were chatting, laughing and playing with our phones. The doctor pulled aside the curtain, walked in and sat down. He said, "You know how we talked about an anatomical abnormality? I have two pieces of bad news. Nate is bleeding internally. The anatomical abnormality that is bleeding is a mass near his kidney". At this point the room started spinning and I don't really remember much else of what he said. I felt like my eyes were locked on his. I couldn't look away. I literally thought he was going to say, "Just kidding! Everything is fine, you can go home now". I had to pull my eyes away from the doctor's to look at Chris...there was no way this could be real. I looked at Chris with tears in my eyes and with tears in his...he nodded at me. That's when I knew this was real. This was actually happening to us...to our sweet and spunky middle child...our Nater. I had to touch him...stroke his hair.
Then there was a blur of movement and words. Phoenix Children's Hospital...helicopter...surgery. I called my mom to let her know that we would not be coming home and could she stay at the house with the kids. They had to wake Nate up and start a second IV. The flight crew arrived and verified that I could fly with him. I could barely breathe but I knew that I had to put my happy voice on and a smile on my face, even if my cheeks were wet with tears. I had never been so scared in my life, but I knew that I didn't want Nate to be scared at all. As we wheeled Nate out to the helicopter, I told him over and over again how exciting it was that he got to ride in a helicopter and how jealous Wes would be. He was happy...he wasn't scared. Nate immediately fell asleep as soon as we got in the air. I cried silently and prayed. Man, I have never prayed so hard in my life. I asked God to protect my son and to carry me through whatever we were about to face. I knew I couldn't do it alone. We flew over the mountains and as I cried and prayed I could see Phoenix Children's Hospital's bright lights shining in the distance...waiting for us. We landed on the roof and Nate was pushed through the hospital to the ER. I followed along in a daze.
Chris drove over to meet us. He stopped at the house briefly and called his parents on the way. He got there shortly after we arrived. Papa and Lou Lou weren't far behind. We spoke with a few doctors and realized that we wouldn't be getting any answers until the morning, when the tumor specialists could look at his CT. At this point we had absolutely no idea what this mass was or what it would mean for Nate. As soon as the doctor in the ER said the word "mass" I wanted to know the beginning, middle and end to the story. I wanted to know what it was, how it got there, how long it had been there, how would we get rid of it and will it stay away forever. Unfortunately, these answers take time (some of these answers we still don't and may never have)...the unknown is the most painful part.
Papa drove me home so I could let my mom go home and get some rest, try and get some rest myself, and be home in the morning to nurse Ellie. Chris and Lou Lou stayed in the ER with Nate. The searing pain that filled my body is nothing that I had ever experienced, there was a crushing pain in my chest...I felt broken. I dozed off for maybe a few minutes here or there and would be immediately jolted awake with the realization of what was happening to my son. Nate received a blood transfusion over the night as they kept him stable and scheduled surgery for the next day at 1pm. We didn't know what the surgery was going to entail. They were going to try and take out the whole tumor...because it was bleeding...but they didn't know what it was or if they were going to be able to take any or all of it out until they opened him up.
Our family rallied and shuffled. I was driving to the hospital from Liz's house after picking Ellie up when I got the news. The surgeon got "all the tumor he could see". I cried and praised the Lord. I knew that whatever this was...this was an important step. Nate came out of the OR without the promised breathing tube and talking. He was already doing so well. The next week was a whirlwind of pain and torture as we learned the name of the beast, neuroblastoma, and what the treatment for our son would entail. I still remember two oncologists and a fellow standing in Nate's hospital room outlining the torture we would be putting our son through over the next year. I did my best not to cry in front of Nate...to keep the hospital as fun and positive as possible. I sat next to Nate, listening to the doctors, and tears silently fell down my face and stained my shirt. I looked up and the fellow was wiping away her own tears. I knew that this was going to be just as hard as I feared it would be.
In those first days, I kept family and close friends updated via text and facebook. I didn't write this story in detail or take many pictures. The reality of what we were going through was so painful that I just couldn't document it. Somehow, it would make it more real. I have avoided writing this story down until now...reliving it is almost too much to handle. The sound of a helicopter landing at PCH still brings me to my knees in tears and prayer. I can be in that moment in time in an instant. Tears stream down my face as I write this. The ER gave Nate a tiger gown to wear and it was changed to the PCH rocket gown when we arrived there. When we left PCH, 9 days later, we took the tiger gown with us, it even has a little blood stain on it from when they started one of the IVs. Chris and I can't bring ourselves to throw the tiger gown away...we packed it away with Nate's 2T clothes. We can't figure out why neither of us wants to throw it away. We think it may be because without this physical article from that night...the night must just be a bad nightmare. It's still hard to believe that our sweet, baby boy was diagnosed with cancer.
We have learned so much this year. We have learned about faith, strength, love, compassion and pain. Cancer treatment has become a way of life. Some parts of it...easy almost. Yet, the pain of that night in July 2011 and the days the followed has not faded. Another cancer mom recently wrote their "diagnosis story" and said the same thing. That she could immediately go back to the searing pain of that moment if she thought about it. I wondered why this is and have concluded that maybe we are not supposed to forget that pain. Maybe it keeps us just angry enough to not be complacent in this disease. No matter how much it becomes a way of life...46 families every day in the United States will experience that pain...7 families will experience a pain I can not imagine and pray I will never experience as cancer takes their child's life. Cancer should not be a way of life for any child. I plan to spend the rest of my life doing whatever I can to try and prevent any more families from living this nightmare.
So, one year later. Here is what Nate has endured in the last year:
135 days in the hospital (83 of those being in isolation)
123 shots
over 70 dressing changes
57 clinic visits (many being all day long)
43 transfusions (18 blood and 25 platelet)
24 days of chemotherapy (16 doses cyclophosphamide, 12 etoposide, 10 topotecan, 6 cisplatin, 6 vincristine, 6 doxorubicin, 4 carboplatin, 3 melphalan)
24 doses Accutane
23 general anesthesias
16 days in Houston
12 doses of radiation
11 days in New York
10 plane flights for treatment
10 hospital stays needing IV antibiotics
9 CT scans
8 days of antibody
8 days of IL-2
8 visits from PT/OT/RT
8 hospital stays needing PCA (morphine pain pump)
7 chest xrays
5 IV starts
5 ER visits
4 hospital stays needing TPN (and at home after transplant)
4 MIBG scans
4 ECHO/EKG
4 audiology tests
4 bone marrow biopsies
3 surgeries for Broviac line placement
3 Foley catheters
3 holidays in the hospital (Christmas, Valentine's Day, 4th of July)
3 NG tube placements
2 PICC lines
2 c. diff infections
2 major abdominal surgeries
2 PET scans
1 bone scan
1 stem cell collection
1 stem cell transplant
1 e. coli line infection
1 helicopter ride
1 hair loss
1 chest tube
1 central line
1 PICU stay
That is a whole lot for a little boy to go through...a lot for a Mommy and Daddy to watch their baby go through. Nate has taught me more in this last year about strength, courage, and resiliency than I had learned in my previous 33 years. The fact that he can go through all that he has gone through and ALWAYS comes out smiling on the other end shows me that I can get through anything. Despite the roller coaster cancer took us on again this week, we are so grateful to be where we are today. We have been to hell and back...but Nate is here, healthy and getting stronger every day. He still has horrible treatments to endure...but there is a light at the end of the tunnel. Today we are relaxing and having fun in the cool air of Flagstaff with great friends and we couldn't be more grateful. Today we are enjoying the moment and thanking the Lord for carrying us through this year. We are also thanking all of you for everything...so many things. This day definitely has a painful sting to it and probably always will, but we are using the pain as a reminder to hold our loved ones close and to look for the beauty in everything. Life is really, just too short.
