From Happy to Horrible

Saturday was Jenson’s best day in months. “It nice to be home” rang throughout the house. We were excited about spending the day together on Sunday too.

It all came crashing down 3am Sunday morning. Jenson woke up saying his leg hurt, “Need you rub my leg.” This wasn’t a normal pain, this was a lip quivering, body shaking type of pain. We called Dr Cavalier at 8am suspecting pain from prednisone withdrawal given his steroid blast ended Saturday morning. She suspected the same thing and had us taper his steroid withdrawal and give him a strong pain medicine every 4 hours.

It didn’t work, so we did the only thing that brought him any comfort all day long… we rubbed his leg.

In the afternoon, we called again knowing this time what was coming our way. Jenson needed stronger pain medicine and morphine = hospital admission. Didn’t we just get out?

It was nice to be home.

They ran the blood counts. This brought more bad news – platelet counts record low (meaning platelet transfusion – who knew they could do those), hemoglobin low (aka blood transfusion), and neutrophil counts almost neutropenic (meaning immune system super low again).

They said Dr Cavalier was on her way in to talk to us. You know it is not going to be good news when your oncologist comes to see you in the ER at 10:00pm on Sunday evening.

I had a feeling what was coming our way so just blurted it out when she came in our room…”His bone marrow is pretty much shot isn’t it? We’re heading towards a bone marrow transplant aren’t we?”

“It would appear that way. Methotrexate would not normally do this to counts,” she replied. We all gave thanks we went with the less toxic chemo route as I can’t imagine what would have happened had we chosen the other path.

Our discussion turned to bone marrow transplant and what it does to your life. Dr Cavalier compassionately shared the hard but honest truth, “It basically turns your life upside down for at least 6 months to a year. You will be in the hospital for a minimum of 1-2 months and then intense visits 2-3 times a week for 6 months after. Things won’t really return to normal for about a year.”

I can see the shock on Doug’s face as he is processing what this means for our family.

We will likely be heading down this path in 2-3 weeks.

We get settled in our hospital room on the oncology floor. I am rubbing Jenson’s leg, and Doug comes over with tears in his eyes, “I never knew I could love you, Jenson, and Sydney so much.”

I know exactly what he means…I just wish love could be pain free.