Dark and Scary (Getting into the fight)

I will not take time to give a blow by blow replay of every thought and emotion from this hospital admission. I will do my best to narrate just the highs and the lows. The morning of April 7th does contain one moment that still haunts me and I wish to set it free…

Entertaining the little guy while waiting for his surgeries to begin.

April 7, 2016

This day is the VERY BEGINNING of Brook’s treatment. It is his OFFICIAL DAY ONE. You are right to deduce that it was dark and scary everywhere we looked. We were still operating under a veil of shock and disbelief but FEAR plagued our souls.

The day began early at Children’s National Surgery Center as we prepped for a number of procedures. Brooks was to have a spinal tap and a bone marrow sample taken for further diagnostic testing. He would also have his Broviac^® catheter installed for ease of administering chemo-therapies. For clarity, the pictures below show this device.  

Even though life was still so very dreary, we were now much more aware of the power of prayer. We felt it’s stabilizing influence. Because of this, before the operations began, we sent out the following message on Facebook.

Please keep up with the prayers for this little guy. Another tough day: surgery for port placement, spinal tap and bone sample this morning. Followed up by first chemo treatment this afternoon. Your prayers are helping. — with Erich Cabe.

 

This image crushed the hearts of anyone who loved Brooks. The moment that Erich captured so well shows Brooks with a solitary tear running down his face. He carries the look of a beautifully sad and precious little angel who doesn’t know that life suddenly became so fragile. This message received an astonishing 70 shares. SO MANY PEOPLE WERE PRAYING SO HARD FOR BROOKS; I honestly thought God would cure him right then and there on the spot. I kept thinking someone would come in and say, “We can’t believe it ourselves, but Brooks is no longer sick! You can go home now. Sorry for the inconvenience.”

As that didn’t happen, we had to keep putting one foot in front of the other watching one difficult moment unfold into the next.

Brooks is ever-the-trouper. Here he is prior to surgery, with one sock off, just banging on the bubble tank like any tough guy.

While Brooks was in surgery, the doctors came to talk to Erich and I. They had an ENORMOUS three-ring binder filled with information about Brook’s cancer and treatment plan. This was to be our owner’s manual for the care and keeping of Brooks. They were talking to us for what seemed like a very long time. They were emphasizing the importance of following the directions listed in the guide they had just given us. The information was overwhelming. How was I qualified to do what they were asking!? Whatever fear we had prior to this exchange, was multiplied. This conversation made everything so real.

Before we went into the consultation room, the doctors told one of the administrators of the waiting room where we would be and asked that we be notified when Brooks started coming-to after surgery. The request was not executed as planned. After a length of time our doctors became curious and went to check on Brooks’ progress. They came back right away and ushered us toward Brooks’ recovery room.

This brings me get to that one moment to which I eluded: the one moment in all of Brooks’ treatment that burns me with resentment…

As we drew near Brooks’ cubicle it was clear there was a full-on emergency situation underway. The recovery room was filled with doctors and nurses reacting to Brooks who was in some serious distress. As we drew close, I caught a glimpse of my baby’s naked body writhing in agony, arching his back away from the bed. I was appalled and thought, “Surely, I should not be here right now.” I turned and walked into the waiting room right next door. The scene was far above my pay-grade. I left because I thought I didn’t belong. I thought I would add to the chaos. I thought I would contaminate the scene. I thought if I was there and reached for him, I would only cause him pain. I WAS WRONG! Half a second passed and I gathered myself. I don’t think anyone told me that I could go into the room of medical professionals. I think my mothering instinct kicked in. Something told me that BROOKS NEEDED ME AND ME ONLY!! I grabbed my baby off the bed and held him in my arms. I rocked him back and forth and whispered, “Mommy has you. I love you so much. You are so brave. Mommy has you. I love you so much.” Over and over and over again.

Brooks quieted down.

A nurse noticed that I was pale and told me to sit down and went to get me a Ginger-ale. I’m so glad she told me to sit because it was at that moment all of the stress caught up with me. I have passed out enough to know what it feels like just before losing consciousness and I was right there. If I didn’t have such an overwhelming NEED to keep holding onto my baby, oblivion might have taken me.

Because of the difficulty with breathing that Brooks had while coming out of anesthesia, they had to make sure there was not fluid in his lungs. The doctors then had to do an x-ray.

His lungs were fine. The ONLY THING HE WANTED WAS HIS MOMMY.  When he started to wake from anesthesia, he was afraid and in pain and I WASN’T THERE! He panicked. His distress caused his lungs to constrict beyond function. He was without air because of his fright. They assure me that it was a short time; that we needn’t worry about brain damage. THIS IS WHAT GETS ME: I WASN’T THERE in one of the most frightening and excruciating situations he had ever found himself. I feel like I FAILED HIM. Had the message of his awakening been delivered, his panic, the lack of oxygen, the extra medicines, the x-ray, the confusion, the BETRAYAL, could all have been avoided. I have lost a lot sleep torturing myself by replaying the image of his suffering.

I know humans are imperfect and this situation was just plain unfortunate. I know forgiveness for the lack of communication toward all involved (including MYSELF) is what this situation demands. I do not always dwell on this occurrence, but I have yet to be freed from its guilt. I know, it seems counterproductive to continue to give thought to this one frightening situation when our baby has been saved… I think I just have locked onto this one moment as a place to put all of my anger towards Brooks’ situation. I have somewhere to place blame…

I know Brooks has long forgotten this event. It may very well have slipped from his brain by that very same evening, when he received his first chemotherapy. This is the glory of Brooks being but 17 months at the time of his diagnosis: he lives only in the moment. It is also likely that he will have ZERO recollection of the MAJORITY of his cancer treatment.

Here we are recovering from the trauma. Another ice-lolly helping to soothe the soul.

After the procedure, we went upstairs to the fourth floor and began our inpatient stay. It is during this admittance that we finally began our attack on the cancer. It was gratifying to know that we were doing something to fight back.

This picture was taken on April 6; the day BEFORE Brooks began treatment. This shows the paralyzing effect the cancer growth had on his nerve. This is why I previously said. “We looked at Brooks and imagined the cancer cells rapidly dividing, taking over his little body.”

We were anxious to begin but not excited about the cure. Considering that chemotherapy drugs are a strong poison made my heart miserable… In many cases, the drugs themselves cause cancer. It’s not delivered in a pretty package with sparkles and glitter either. The nurses dress head to toe in protective covering. They wear special fluid-resistant garments. The extra masks and gowns cause discomfort for everyone… even the nurses. (Apparently they are very hot.)

Again, I remind you that we are incredibly grateful for our care. The entire field of cancer has made astonishing leaps because of research. Just 20 years ago, childhood leukemia and lymphoma carried a 4% survival rate. Now, for most cases, the cure rate is over 90%. The drugs have also become more tolerable for the patients.

The actual chemo administration was relatively simple and easy. There was no vomiting, there was no screaming as the fluid entered his veins. The only thing Brooks hated was the nurses. If they were touching him he yelled as loud as he could in their faces. Nothing I said or did could ease his protesting.

The mere presence of any stranger near our room was one that Brooks would not adjust to for many months to come. When the nurse came in with her head-to-toe blue robe, Brooks was especially beside himself.

With occasional disruptions, we made it through and the night bled into the next day. I sent out the following update:

April 8, 2016

Yesterday was a difficult day… A nightmare within this nightmare from which we can’t seem to wake up. Brooks had some difficulty coming out of anesthesia. Erich and I walked into a room of panicked doctors as Brooks struggled to breathe. I can’t explain the terror of the moment but know we were all carried through on a strength not of our own. Brooks still had his first dose of chemotherapy last night and that seems to have gone smoothly enough. The doctors called this dose “chemo-light.” Today, Brooks is in some pain from all the diagnostic surgeries and prep and possibly the growth of the tumor behind his ear, but with pain medicine and a healthy dose of steroid, he is a happy little bulldozer of activity. So many people have inquired of Brooks well-being… And also of his brother, Max’s. I can’t explain how grateful we are for this outpouring of love. We have a long road ahead as we fight what we officially now know is diffuse large B cell lymphoma. I will continue to give updates along the way. Brooks is one hell-of-a fighter already and has a tremendous spirit. Max is the best medicine for us all, keeping us laughing and in the moment. Thank you for holding us in you hearts and for your sustaining prayers. — withErich Cabe.

The rest of this hospital stay is gone from my memory. I’m guessing its because it was uneventful and that is a good thing. We were in the hospital for at least two more days. I know because I have photo documentation. My mind is black when I try to think of how those days were filled.

Brooks was not yet interested in the iPad and the available toys held his interest for only a short time. I have one picture of Brooks with a clock on his head. I remember this was a source of great amusement for a good 15 minutes. I know we made many videos for Max, telling him how much we missed him. I remember exhaustion and sadness and clutching as tightly as possible to my baby. I remember countless people reaching out to us; showering us with love and support. I remember holding tight to their prayers. Mine were desperate and sad and full of worry and fear. But the prayers of others, they held hope.

I am grateful that I do not remember intricately the hours passing during this admission. That is three days of my life I am happy to black out. The entire first month was a never-ending nightmare. My heart goes out to families who are just getting their diagnosis and who are still trying to figure out how to live in their new reality. It does get better but it takes some time to adjust.