Wednesday, March 25, 2015

25 more doses.

Watts (and therefore all four of us) are in the throes of another steroid round. This one is a doozy, and has been rougher on our champ than I remember a monthly round being in a long, long time. He's screamed and raged and whimpered through the last 24 hours and it is heart-breaking to watch. Watts is at a tricky age because he can understand so much of what we say, and yet has no concept of what we mean when we tell him he only has three more months of treatment left. 25 more doses of steroids. 47 more doses of 6-mp. A handful of IVIG transfusions. Three more doses of MTX. Two more pushes of VCR. One more lumbar puncture. ONE! We are so very close. It doesn't feel real yet (I'm not even sure that I can remember how to do life pre-cancer), but we are reminding each other and our hearts daily and celebrating in small ways already. Watts has come so very far.


Yesterday when Watts and I arrived at Brenner for his appointment, Watts turned to me after I told him about the procedures that they were about to do, and exclaimed, "But, Mama, I not sick!" And then we had to talk again about blood (aka Mr Red) and blood cancer and how the medicine has been helping him fight the cancer and to stay well. He listens when I tell him and then cheerfully helps the nurses and doctors as they listen to his heart, weigh him, etc. and access his port.

"It just tickles, Mama," he tells me, through tears, as they push the butterfly looking needle into his port. There's no blood return, unfortunately, so after trying all the yoga/gymnastic/goofy moves we can think of to try to make some blood appear, we end up waiting for a couple hours for the "magic medicine" to clear out any clots from his port. When it finally works, Watts exclaims, "I missed you, Mr Red!" and has the nurse in stitches. I mean, seriously, could this little man be any cuter? And then he wants to help the nurse push his chemo in; his little chubby hands gripping the syringe with the nurse's gloved one, as together they push the drugs into his little body. I snap a blurry picture of the moment because I want him to know some day this part of his story, of his courage, of his life in the throes of maintenance cancer treatment.

His cheerful demeanor crumbles at the end of the appointment as our nurse tries to remove the bandage covering his port access, his skin has become red and inflamed after a few hours under the Mepilex. He screams as we try to slowly ease it off to minimize the pain until he decides to to take matters into his own hands and, after pushing our hands away, rips the bandage off of himself. This kid is just ridiculous. The nurse shakes her head in disbelief and high-fives Watts as they discuss his choice of character band-aid, which is the ultimate reward in Watts' mind.

His labs are where they are expected, and his counts shows no sign of relapse. With blood cancer, every single CBC/lab check could hold potentially devastating news, and also holds reason to celebrate. So we celebrate and stay in the moment and leave our worries for another day.


So, all that to say, our little warrior boy is having a hard steroid week, but we are not discouraged. Weary, but not discouraged. We have our eyes fixed on May 29th and our hearts are determined to soak up the little moments of joy between the hard moments and days... Watts has taught us that after all.

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