Day 49- STRONGER

Red and I are in the Cancer Center indefinitely. Our new home.

A few days ago he went through the second surgery of his life. This time to get his port put in. All went well, and he's got it placed in his chest. On the one hand, I'm thrilled as this means no more IVs to bother him. On the other hand, oh my god there is something implanted in his chest!!! 

Today is day 2 of the new 5 day chemo cycle. He's done great so far, with no side effects. He also got a blood transfusion which boosted him from a very pale yellow color to a beautiful pink. His vomiting now seems under control with reflux medicine, and his weight has gone up quite a bit. He's smiling, cooing, and starting to learn to laugh a little bit. Quite a change from the days and nights of non-stop crying we were just having. All of these things help him to look very healthy. And when I forget all the cords are there, he looks normal.  

Our GI test came back and everything looks great. No blockage that they can see. They believe now his immense pain is being caused by the size of the tumor pushing on his organs. Instead of approaching that pain as an indication of a problem we can fix in the short term, we now feel that pain management is an ongoing strategy for his life as long as this tumor is pushing on him. Sometimes if I think about it too long it can be crippling. Knowing he's in pain. Seeing that he's suffering. God help me... I'm not strong enough for all of this. 

Our days are full. Medicines, chemo, tracking eating, changing, sleeping (thank god there's an app for that). But they can also feel very empty. I miss my boys. I miss my love. I miss home. It's incredibly hard for all of us to be apart, to always feel that something is missing. Red also does much better when he's at home with his brothers. He has a special connection with them that he doesn't have with anyone else. 

The last several days I've been reminded, very consistently, that as hard as the 'now' is that we're living in, there is much to be thankful for.

I'll share this example... Last week I stood in front of the elevators, waiting to hop on and get checked in for our stay. A woman walked up and stood next to me and was very visibly upset. I assumed she was coming from PICU as she was walking from that direction. I wanted to say something to her, but I couldn't come up with the right words before the doors dinged and opened. Because truly, there are NO RIGHT WORDS TO SAY. Another woman exiting the elevator grabbed the woman next to me and said 'I've been praying for your baby... how is she?' Choking out words, tears rolling down her cheeks, she responded 'the doctors told us she's got 24 hours.' I stood there completely paralyzed as they hugged and cried together, sharing in a grief that only truly devastated parents can share.

I mean, what could I possibly say to them? I was standing right there holding my baby. Their babies were in PICU struggling for their lives. I cannot. even.

Sometimes I like to look back through this journal of Red's journey. To remember that not very long ago I couldn't touch him. I couldn't hold him in bed with me. I couldn't feel his body snuggled into mine as we sleep. I couldn't see smiles, or hear laughs. To remind myself that even though the now is so very, very, hard... it's still very far away from where we started.

The first night we ended up in the cancer center, and first heard the word CANCER, I snapped a picture of Brian holding Redden. It's on our first post we wrote. Seeing it still brings me to tears as I remember acutely the feelings of that day. The absolute fear and devastation of the unknown. Right after Red's port placement surgery I happened to get this picture. So similar to the first day we were here, yet the feelings are different. We still don't know how this will go. We still have only hope and prayer for how it will all end. But we have become comfortable in our uncertainty. Stronger by acknowledging our weakness. Braver about facing the unknown. All because of Red.