Blog #9 Spencer...Only the Beginning

In the last post, I ended with sweet Spencer being loaded onto the ambulance to be transferred to Texas Children's Hospital in the medical center.

We jumped in the cars and followed the ambulance there. I worked in a hospital in the medical center for almost 12 years, and never before had my drive seemed to take so long. The questions, the fear, and the worry coursing through me was relentless. I knew where we were driving to, but I had no idea that this was the beginning of one of the longest journeys I would ever endure.

We arrived at the hospital, and were directed to the third floor waiting room. The ICU waiting room. Little did I know that so many days and nights would be spent here over the next two years. I did not know that I too would be one of the parents sleeping in one of the many recliners here.

There were many people already there and waiting when we arrived. We sat quietly with wet faces, numb and waiting for someone to call us back to see Spencer. Finally after what seemed and eternity, we were told we could see him. My husband and I followed the nurse slowly and quietly to Spencer's bedside. There was my little man. Four years old. My baby. He was sedated. A breathing tube was in place. He could not breath on his own at this point because the tumor was blocking his airway. Taped to the ventilator was a sign that read "critical airway."

I looked at my husband, tears streaming down his face, as his tried to say, "I will be back", and he walked away to compose himself. I took Spencer's hand and started talking to him. I told him what was happening. I explained why he had a tube to help him breathe. I told him we were here and were not going to leave, and I cried, and I started praying.

So much from this point is like a movie I watched so long ago. Certain things I remember perfectly and other parts are a blur. So many things started happening so quickly. So many procedures and scans to be done, and so many doctors, nurses, and specialist to talk to and discuss the plan of care and prognosis.

Biopsies had been done at the other hospital when they found the mass (1/22/16). Results for these would take several days to get back. On Jan. 24, Spencer had a bone marrow biopsy, lumbar puncture, MRI, CT scan, and a port-a-cath placed to give him his chemotherapy. On the 25th, he had a PET scan done. All of these tests would tell us if any cancer was anywhere else in his body. By the 26th, we had the results of the tests. Spencer was diagnosed with lymphoma, but the specifics were pending, and the other tests showed the cancer was no where else in his body. All good news.

Just one quick side note. When your baby is in ICU, you cannot sleep in the room. There is literally no where to sleep. There is a chair. So many times I sat in that chair, holding my baby's hand, bent over with my head on his bed, sleeping. As I said before, little did I know how many nights I would spend in the waiting room recliners. They have a cabinet full of pillows and blankets, and the recliners lay completely flat. Every night, lights go out at 9pm, and the waiting room is full of families with babies in the ICU that they cannot leave. Many very restless nights. I dont think we slept much at all in the beginning.

Spencer was kept sedated with a breathing tube as well as a paralytic agent the first few days. We did not see his sweet eyes, we could not hear his little voice. We just sat with him and talked to him. On Jan. 26th, they decided to stop these medications. This was a scary thing to this mamma. I knew my baby would wake up and see us, and this was good, but I also knew he would be uncomfortable with that breathing tube, and that hurt my heart.

But he did open those sweet eyes, and we were there when he did. We talked to him again about the tube helping him to breathe. He nodded his little head that he understood. He would shake his head yes or no in response to our questions and he would point to things that he wanted, but yes, he was fighting that breathing tube. However, he was doing well, and it made our hearts happy to interact and talk with our sweet boy. Another x-ray was done that day as well. Spencer had pneumonia in his left lung, and they started treatment for that.

On Jan. 27th, we received the official diagnosis. Berkitts Lymphoma. Because Spencer's tumor touched the dura of his brain, he would start chemotherapy as well as lumbar punctures to inject the chemo into his spinal fluid every other day. Treatment was to be started the next day- Jan. 28th.

Those first days were hectic, and only the beginning. The roller coaster of emotions cannot be put into words. The amount of support we received from friends, family, and even strangers was overwhelming and incredible, and to anyone reading this who offered your help, or even just your prayers, we still thank you from the bottom of our hearts.

This is truly a tough things for me to write. To remember this...well, it seems as if it were yesterday. It is still a very fresh wound. So, today I will stop here. I still have two years of Spencer's journey to share. I hope to continue again sooner than later. Have a great evening friends.

Kiss your babies!