|Moussa, 10 years old|
I'm not sure why certain patients grab my heart and come to mean so much to me. In 13 years as a pediatrician I've never had a patient affect me as much as Moussa did. He came to us two years ago with a huge abdominal mass. We diagnosed a probable Wilms Tumor, which is a type of kidney cancer. His tumor was so large it wasn't difficult to see. He had surgery immediately and his kidney with the tumor was removed. He started chemotherapy at the same time and stayed at the hospital for several months. The difference in his appearance was remarkable after his surgery.
Moussa had a great response to his treatment and began to feel better immediately. He became a constant presence in my office and around pediatrics. Other than losing his hair he had very few side effects and quickly became my buddy. Incredibly, he even gained weight while on chemo. He chunked up nicely after having been sick for so long.
After several months of treatment, Moussa had no further evidence of his cancer and he was able to return to his village. One of the unique things about Moussa is that he was illegitimate. His mother had him out of wedlock, which creates great shame for the family. She abandoned him and left him with his grandparents and she moved away. She married a man who would not accept Moussa and so he only saw her a couple of times in his life. He was cared for by his grandparents and great grandparents in their village. His basic needs were met but he was never treated like a legitimate son of the family. Despite this, he developed an amazing personality and had a wonderful little laugh. He was such a delight and made me smile and laugh every day I was with him. Of course there were times I wanted to wring his neck, but they were far and few between.
|Road to Moussa's village|
|Moussa, his grandmother and great-grandmother|
Moussa was home for several months before he had a recurrence of his tumor. I was contacted by the local nurse and I drove out to pick him up and bring him back to the hospital. He'd lost a lot of weight and was having a lot of pain in his back and sides. His tumor seemed small but was easy to feel on examination of his abdomen.
|My buddy was back but a lot skinnier|
We started chemotherapy again and he once again responded well to treatment. His tumor shrunk and he felt well. This was a really fun time with Moussa. He was everywhere at the hospital. He came to staff devotions every morning, hung out in my office, and basically supervised everything. He'd let me know it if I was a few minutes late, who else was late, who didn't come to work that day, etc.
|Hanging out with nurse Kristen, one of my teammates|
|He would tire out easily and fall asleep on the exam table|
table in my office
After several more weeks of chemo it was time for his second operation. The goal was to remove the new tumor. I was able to assist in his surgery where we found that, although the tumor had shrunk, it was still very extensive. There was no distinct tumor to remove and we had to close him up without removing anything. The cancer had spread everywhere. This meant that there was no other treatment left for him. It was heartbreaking to know there was nothing else we could do for him and to know that the tumor would start growing again.
After he had recovered from his operation, we once again returned him to his village. It was hard saying goodbye to him this time because I knew he would soon begin to have pain from the cancer as it started to grow again. We had nothing left to do for him but treat his pain.
About a month after I took him home I went to check on him and was saddened by the change in his appearance. He'd begun to lose weight and have abdominal pain. Despite this he was not ready to return to the hospital for hospice care.
|One month after going home|
|Still with a smile despite feeling so bad|
I left him again knowing I'd be back in a couple of weeks. I left a lot of pain medicine for him that helped him rest. He wasn't eating much at this point but was still getting around and happy to be home.
Two weeks later I was pretty amazed at the difference in him. He'd lost more weight and the tumor in his abdomen was growing and giving him lots of pain. This time we knew it was time to bring him back to the hospital so we could maximize his pain meds for his final few weeks of life.
Over the next couple of weeks he got weaker and weaker and spent a lot of time in my office with me. He eventually got too weak to leave his bed so I'd stop by and see him throughout the day.
In mid November I was scheduled to come home to the States for my home assignment. About four days after my arrival I received an email from Sheri MacLean (my teammate who took over Moussa's care) letting me know that Moussa had died. That was November 21. I thought being thousands of miles away would make it easier to hear. But it wasn't.
Here's what Sheri wrote:
When I came in this morning he was already in agonal breathing so I knew it wouldn't be long. I sat with him for a long time. Though he was unconscious, when I said his name and told him I was there, he grunted. I really believe he knew I was there. I laid down on the floor beside him (as for the last few days the ground was his place of choice to lay) and gently rubbed his head. The poor thing had suffered so much and the end was in sight. As I mentioned before he had asked me to go to church. I wasn't able to fulfill that wish to my regret but as I was thinking of that this morning I started to sing some of the few songs I know in Bambara. His grandmother joined in and we serenaded him for the last 10 minutes of his life. The last song we sang right before he passed says,
An taato file san fe, We are going to heaven
An ka so nyuman de be yen. Our beautiful home is there
Matigi tarra an nye fe God has gone before us.
An bee be taa sigi a fe. We all will go sit next to Him.
How fitting to sing this as he left this world and I believe he was welcomed into heaven by a great chorus. It is humbling to sit with someone, especially a child, as they leave this world. It was not a moment I will soon forget. As awful as it was, it was a privilege to get to be with him and his grandmother at such an intimate time.
Despite grieving for Moussa, I'm so grateful for having known him. He brought me a lot of joy and made my job so much fun. I'll miss him.