Another week, another clinic visit, another long day of battling the leukemia demons

Serenity didn’t feel well this past weekend. We spent most of Friday evening at the hospital. Her hematocrit and platelets were high enough that we went home without a transfusion and she spent the rest of the weekend sad and feeling poorly. We gave her Oxycodone several times to manage the pain. Sunday night we noticed blood in the dressing covering her port catheter, and we called Home Health to come check it. After conferring with the oncologist, the nurse decided that it was ok since we had an appointment at the Oncology Clinic Monday morning.

Monday morning we made the hour and a half drive to the hospital. We had been told that Serenity would be having another bone marrow aspirate, so she wasn’t allowed to eat after midnight, and couldn’t have anything to drink after 9 a.m. At about 12:30 they told us that there had been a mixup, and her procedure had been canceled but no one had told us. The bad news was that she had fasted for nothing. The GOOD news was that the reason her procedure had been canceled was that the level of cancer cells in her bone marrow had dropped to 2% the week before. (The target was less than 5% so 2% was GREAT.) This means that she is responding to the chemotherapy even better than expected. We are so happy to have some good news!

Her blood results came back and her numbers were going back down. The doctor said they weren’t low enough to require a transfusion, but they would surely reach that point over the next few days, so we decided to transfuse anyway. Monday she spent an hour getting a platelet transfusion, and then we made the long drive home, having been at the clinic for more than 5 hours.

This morning I drove back up to the hospital for her red blood cell transfusion. We didn’t do it Monday because it takes several hours for the lab to deliver the blood once it’s ordered. So we spent another 4 1/2 hours at the hospital today while she received her transfusion. She handled it really well, and slept through most of it, despite peeing through her diaper and clothing and soaking my lap! After her transfusion it was time to take off the dressing on her port catheter, a process she HATES. She had been so mellow the whole time we were at the clinic but when they started to remove her dressing she screamed at the top of her lungs. It breaks my heart to watch her suffer. She screamed, “Stop! Mommy! Stop!” with huge tears streaming down her face, but thankfully it only took a few minutes. Once the bandages were off and the needle was out she calmed down. She will have to go through the process each week of having the needle inserted and then later removed, but in a couple of weeks it will be reduced to (hopefully) once a month rather than once a week.

In the beginning when we were recounting the story of our diagnosis I would plaster a big smile on my face and reassure people that “we had the good form of leukemia,” that we were lucky because our leukemia has a high cure rate. All of which is true. And somewhere in the back of my head I expected that life wouldn’t be a whole lot different, because we were so lucky. Serenity hasn’t lost her hair yet (she will), and despite being bone thin and emaciated, she is cute as a button and people who don’t know her well don’t know how sick she is.

What I am only now starting to realize is that even though she has the most treatable form of leukemia, this is going to be a long and arduous journey. Even though she is responding to treatment, each visit is filled with tears and pain and my heart breaking just a little bit more as I have to hold her down and explain to her that it won’t hurt for long, and we have to do it in order to help her get better. She doesn’t understand why she is suddenly being force to undergo surgery, lumbar punctures, shots, vomiting, forced medication, mood swings, the inability to stand any more, bandages being put on and then pulled off…the list goes on and on. All she knows is that life is suddenly very very different, very frightening, and she doesn’t know who to trust anymore. She freezes up when anyone enters the room, because she doesn’t know whether this person is going to cause her pain.

I recently heard the following analogy:  Let’s say there is a soccer game, comprised of 2 soccer teams.  Each team has 12 to 15 players.  Before the game is over, 5 or 6 of those players will be dead.  Would you want your child to play soccer?

Serenity stand a very good chance of surviving the soccer match.  But watching the game is going to be painful for all of us.