Blog #8 Spencer's Journey Continues #Spencerstrong

Beginning towards the end of the year of 2015, Spencer seemed to have what was a cold. This cold never got any better, in fact, it continued to get worse. We saw the pediatrician multiple times. Once it was a sinus infection, then again sinus that we were prescribed new antibiotics for, then other viral diagnosis. One Saturday he woke with a horrible rash covering his entire body- also diagnosed as viral.

I want to stress that this was over a period of months. Spencer began to have a very hard time breathing through his nose at all. The "mucous" from his nose was an orange color- very different from anything I had ever seen as a nurse or as a mom of four kiddos. He began to have trouble eating because he could not breathe and eat at the same time. Then it became scary. When he would sleep, he had trouble breathing. It got to the point that we would not let him sleep alone. The daycare was also concerned and scared for the trouble he was having. Many trips to the pediatrician and each time they claimed he had a sinus infection or something else.

Finally, after our last visit to the pediatrician, I decided I needed to make an appointment with the ear, nose, and throat specialist. I made this appointment the same day and got him in to see the doctor as soon as possible. Spencer's situation was becoming very scary at night. I was not sleeping much because I was trying to watch him and his breathing. Because he could not breathe, he was not sleeping much at all and was falling asleep at all times of the day.

We saw the ENT and she determined that he probably needed to have his tonsils and adenoids removed; each time commenting on what a big palate he had. Insert now my <not good> emoji.

Spencer's surgery was quickly scheduled; at a hospital I worked at in surgery; with doctors and nurses I worked with as well- I knew he was in good hands.

Now, me being a nurse in surgery at this point, with this doctor, I knew this was pretty a pretty quick and routine surgery, until it wasn't. As I sat in the waiting room, I was thinking to myself, "This is taking a long time for this."

Finally, the doctor came out to talk to me. I still at this point was not very worried. I was a nurse in surgery, and my children unfortunately have had many procedures, so I knew that sometimes things just took longer for many reasons.

The doctor brought me to the consultation room. She said, "We found a large mass. I took several biopsies, but it will be a few days for the results. We are probably looking at some type of lymphoma."

I was like a statue. All of my medical knowledge at this point was gone and void. I went into complete shock. That is the only way I can describe it. I just stared at the doctor. My question was, "How much should I worry?" The doctor's answer, "Not too much until we have biopsy results."

I then called my family. They were there with what seemed like minutes, but I know it was much longer than that. Reality began to kick in. I realized what had been found and what the doctor had told me, and I was a complete mess. Tears streamed down my face.

Meanwhile, I went to the recovery room to see my sweet Spencer. He was having a hard time breathing. I was scared. The hospital was calling Texas Children's Hospital to have him transferred via ambulance. While waiting, the ENT doctor wanted an MRI to see what we were actually dealing with. The anesthesia team would try to sedate him enough to keep him still. They were not able to achieve this. Spencer was intubated during the MRI and anesthetized to keep him still and comfortable. After the MRI, he went back to recovery. They again tried to take his breathing tube out. His oxygen levels were dropping, and because of the mass he could not breathe! I stood and watched, surrounded by so many nurses that I had worked with, as the anesthesia team put his breathing tube back in- for the third time!!!! (Gonna keep these words to myself medical professionals who know what I'm saying!)

We waited for Texas Children's transport team to arrive. All the time I stood doubting myself. Did I wait too long? Did I not listen to my gut when I knew something was seriously wrong with my baby? Is it too late?

While we waited, MRI showed that Spencer's tumor was very large. I will put it in simple terms. Spencer had a tumor that touched the edges of his brain, filled all of his sinus cavities, and extended down his throat to his vocal cords. The tumor filled all the once empty spaces of his face. This is why my baby could not breathe.

Texas Children's transport arrived. They changed and required many things before putting my baby on the ambulance to be transferred. He was sedated, he had a breathing tube, and he was in critical condition for his ride to the medical center. I have no words for what I was feeling.

The transport team loaded him onto the ambulance. I kissed his sweet little face. I touched his sweet little, fat, toddler hand, and I told him I loved him, and I would see him once he was settled into the ICU at the hospital. I promised him I would never leave him. I told him, "You were born a fighter, so please keep fighting baby, and mommy will be right here fighting with you."

I want to give all the gratitude to my friends at the hospital where Spencer had his surgery. Everyone there did a remarkable job taking care of my baby, and the support I received will never be forgotten. I am thankful for everyone that was there on that very unforgettable day.

Tonight I will stop here. I am already a mess just remembering this. Like Dylan's story, this is also hard for me to remember.

This was only the beginning of one of the toughest times of my life. I smile at the end, but this story is far from the end. We are a couple years and many, many battles away from the end.

Continue to read friends. Spencer's story will definitely make you cry more times than you care to remember. It will make you wonder how one's heart can handle the realities that we sometimes face. But in the end, and as I talk about his journey and his fight to survive, I hope you will begin to rejoice in the little triumphs, and smile in the end. For the end of this journey was something that brings a smile to my face everyday, and I hope it will to your face too.

Kiss your babies!!!