Blog #10 The Start of Spencer's Treatment

I ended the last post with Spencer's official diagnosis- Berkitts Lymphoma. The official diagnosis was given to us on January 27, 2016. Chemotherapy was to begin the next day on the 28th. Fear. So much fear. The risks and side effects of chemotherapy are terrifying. Pumping poison into my baby's body was a terrifying idea. But the idea of losing my baby to cancer was even more terrifying. There are never any words for the feelings or ideas that you might lose a child.

I sit here reading an entry on Spencer's Journey page the day he received his first dose of chemo. "Spencer finally received his first dose of chemo at about 4am this morning. He will get his first injection of chemo into the spinal fluid today. He remains intubated (a breathing tube), but is awake and alert, and even playing nintendo. The nurses say they have never seen an intubated kid play video games. Prayers are working. Thank you everyone. Keep them coming."

Spencer remain intubated after his surgery because the tumor was so large it was blocking his airway and he was unable to get enough air into his lungs. This made him a "critical airway" patient. On January 28th, during a breathing treatment with the respiratory therapist, Spencer began to cough. He coughed so hard that the tube came out of his airway. So many people rushed in believing they were going to have to quickly put the tube back in, but miraculously he was breathing on his own! He did need a mask to help deliver a little extra oxygen, but he was doing it!

I have a video of my baby that day. He was eating a popscicle! Little man had not had anything for over a week, and my baby got a treat! The expression on his face in the video was heart warming. Never would you think that seeing your child eat a popscicle would make you cry, but I did just that. I bawled like a baby.

Spencer's chemo ran continuously. He received the chemo into his spinal fluid every other day. He was sick. So sick. But he was happy. The resilience that children have is remarkable. The medications he was receiving orally was also overwhelming. By the time we were able to get him to take them all, it seemed as if it were time for more. It was rough. Most of the time the oral medications just came back up because the chemo had him throwing up at every turn. We knew this was only the beginning of a very long road. Spencer would go through a total of 9-12 months of chemo treatment.

On January 30th, Spencer was moved from ICU to the oncology floor. This was a huge step for him, and it meant he was doing a little better for now. The oncology floor. Here, we found a new family. Nurses, doctors, and most of all, other parents with children going through similar treatments, similar worries, fears, and hope for our children. The oncology floor becomes home. Most of these kids are there for months at a time. These kids make friends, and these are the kids that they can interact with while they are there. Parents become friends and support and hope for one another. Nurses, doctors, and families pray together, go through loss together, lean on each other when there is no one else to lean on. For each of understood exactly what the other was feeling. We were literally walking in each others shoes; mostly up and down the halls of the 9th floor.

On February 2nd, Spencer was able to go home. Unfortunately it was only for two days. on February 4th, Spencer was admitted to start his second round of chemotherapy. Getting him back to the hospital was heart wrenching. He cried and he cried and he cried. He did not want to go back, and it broke my heart to say the least. The second round of chemo had little man feeling pretty bad, and he wasnt really able to eat, but overall it went well and he was discharged home on February 13th.

The next day, on the 14th, Spencer was not doing well. He was continuously vomiting and he began to run a fever. With any child going through chemo, a fever is an immediate trip to the emergency room. This is the first sign of infection. You have to remember, the chemo wipes out any immune system that they might have leaving them unable to fight infection.

We arrived at the ER and were immediately taken to a room. Blood cultures and lab work were done. Spencer could hardly speak. He mouth and throat were covered in mouth sores- a result of the chemo. They started in on a morphine pump for the pain.

On February 17th, Spencer remained on his morphine pump. His temps were running around 103-104. He was on an array of antiviral medications as well as antibiotics. He received a blood transfusion. They also started him on IV nutrition because he was unable to eat or drink or keep anything down. He was not doing well. His condition was becoming very serious to say the least. He also started losing his hair on this day.

On February 18th they discovered a serious infection in his lungs. He went into septic shock, was rushed to ICU, and intubated once again. The infection in his lungs was quickly progressing and they could not find the cause, and it was one of the scariest times of my life.

On the 19th he was in even more critical condition. At this point the doctors were taking it hour by hour. On the 20th, they would place a dialysis catheter to start him on dialysis. He was also switched from the ventilator to an oscillator. Let me explain. Im sure most are familiar with the good ole ventilator. Spencer's infection in his lungs had become so severe that the ventilator was not able to oxygenate his blood as it should. The oscillator is the "washing machine" if you will of ventilators. It keeps the lungs inflated continuously. Now let me tell you, Spencer was already so swollen and full of fluid that I hardly recognized my sweet four year old boy, and then add the oscillator keeping his lungs inflated...lets just say, the first time I walked into his ICU room i fell to my knees, crying out in a way that one can only imagine. I did not recognize my baby, and I was on the verge of losing him.

On February 21st, the doctors sat down with us for a big decision. Nothing more could be done to help with Spencer's lungs. The lungs needed to heal and rest. We had two options. Continue with the oscillator; which was not doing the job at this point; or we could put Spencer on ECMO. This was a bypass machine. This machine would oxygenate his blood for the lungs, hopefully letting the lungs rest and give time to treat the infection- the infection that at this point they still had not found the cause of. The risks with the ECMO were scary to say the least. If it worked, and it saved my baby, there was a chance I might not be getting the "same" little boy back after it was said and done, but if we did not place him on ECMO, we would most likely lose him. So really we had one choice- ECMO. I would do anything and everything I could to try to save my baby boy's life.

I sit in tears as I write this. These memories I think will always make me cry, but they will always make me smile a little bigger than I normally would every time I look at Spencer had we not been through this. Im going to end here tonight. This does take a lot out of me.

Kiss your babies!