Tuesday, 30 August 2011

Mamine (osteosarcoma) update

I've just gotten back from taking Mamine to the hospital. Her brother called me this afternoon and told me to come as she had been crying in pain for over 2 hours. He has called me to the house several times but today was different. Other times, by the time I got to her house, her pain had subsided. Today she was still visibly in pain. We gave Tramadol that we had prepared for her when Alan visited.

Sensing that her pain was more intense, I knelt beside her and asked her if she wanted to go to the hospital. I told them we would cover all the cost of her care. They were hesitant to go because they don't even have money for food. I assured them we would cover that as well. I've mentioned the hospital as an option for pain control for several weeks. For the first time, Mamine agreed to go. We got the family ready and moved her painfully to the car. As she and her mother sat in the car, they began to cry. This is the first time I've seen Mamine cry. I often ask her if she is ok, or afraid. Her response is always, "Why? Afraid of what?" Today, however, she understood. She was crying for the life she knew she was leaving behind. That, possibly, today was the last time she would be at home.

We got her settled at the hospital and I wrote for regular pain medication. A family friend was there and asked me the same questions I've been asked too many times to count- Why is her leg like this? Can you treat her? Can't you cut it out? It is just as unpleasant to tell someone the 10th time that she is going to die and that we can do nothing than it was the first time. At least in America we have some understanding of cancer and its progression. Here they don't understand it. I could just as easily say she has a watermelon growing in her leg. Trying to get them to understand that this is not treatable is even harder for them to grasp. It is physically painful to discuss these things with them.

Now Mami will hopefully have good pain control. At least she will have some excitement and different scenery at the hospital since she hasn't left her courtyard since we took her home months ago. I do hope that she can enjoy her days at the hospital, as weird as that sounds, and feel loved and cared for by those of us around. Though aside from a miracle from God we cannot change her outcome, hopefully we can ease her pain and bring some joy in these days. Praying tonight that she finds hope in this hopeless situation.

Sunday, 28 August 2011

Kadia (Leukemia in remission) goes home

Since I posted on Francois going home as his leukemia is in remission, I thought I would show pictures of our other leukemia patient Kadia's last day at the hospital. She left a month before Francois and has already started receiving her monthly maintenance chemo. (They do take chemo by mouth every day but only need an IV med monthly).

A few days before she left I had Kadia and her family over for lunch and had henna put on their feet. People use henna for special occasions and what better occasion was there than going home after 7 months in the hospital?

She was quite happy.

Feeding her baby before she left.

Riding around with Francois one last time.

The whole gang. From left to right: Djara (type 1 diabetic), Francois, Balla, Kadia, her mom and Amos.

One last picture before heading off (I had my hair braided the day she got henna on her feet. It was a Malian style beauty parlor!)

Taking Francois (Leukemia in remission) home

After 7 months in the hospital, Francois was finally able to go home. We decided to make a day trip out of it and spend some time in his village of Zamblala.

The scars on his stomach are what they tried to do to heal his enlarged spleen before coming to us. This is a very common traditional treatment.

Francois ran to see his grandmother as soon as we got out of the car.

With his mother and siblings.

Eating lunch Malian style. Eclé is a nurse who comes from the same village and he is adding the sauce to the rice.

It was a lovely day in the village. Truly enjoyed it. Sad in a way to leave Francois there but thankful he is in remission and can go home.

Visiting Mamine (incurable osteosarcoma)

I wanted to take Alan to Mamine's house while he was here to see if he had any ideas of what we could do for her. I also wanted to the family to hear from him, a specialist, that there is no treatment for her cancer.

Sorry if this is gross to some people, just thought I would share the extent of her illness. So the cancer started in her hip and has grown into her leg and across her abdomen.

Alan said that when his patients need medicine, he writes a prescription and they go to the pharmacy and get it. Even chemo drugs. Not so here. When you are dealing with a mostly illiterate population, sending them off to get meds doesn't work. Alan told us to use prednisone to decrease her bone pain. Mamine looks on as Carol helps Alan cut the packs into the right dose for her with a knife they had in their house.

The group visiting. The man in the red is a pastor that often goes with us.

We brought Tramadol for her pain but the problem was that they are shots. She was scared to death. Here is a girl with a huge tumor, hasn't laid down in months because of the pain, can only take a few steps but is afraid of a shot. We gave it anyway and I think it helped.

However, when we went back this week she said she hadn't used the medicine at all. I'm hoping this is because the steroids are working and not because she is just too afraid to use it.

Mamadou (new Hodgkin's lymphoma)

Mamadou is a 6th grader that actually was seen at our hospital for a clinic visit in November with an enlarged lymph node and no other significant symptoms. He did not return to our clinic until two weeks ago after having done 6 months of TB treatment that was given from a different clinic. When he returned, he looked like this...

Moments like these make it abundantly clear to me that God is with us. He had this growing mass since November but "chose" this week to come into the hospital again while Alan was here. Alan took one look and said it was lymphoma. This is significant because we were not aware that lymphoma presents as a cluster of swollen lymph nodes. We thought it was just one enlarged node. I can't honestly say what we would have done. I would like to think that we would have consulted Alan and found the diagnosis but I don't know. It was incredible that he was here at just the right time to diagnose this cancer and teach Brett and Ed (our lab guy) how to look on the bone marrow slides. It just amazes me. It's not like this growth showed up in a day. It had been growing for months and they decided to come the week Alan was with us. God is surely in control.

Here he is in the OR waiting to do the biopsy.

He has stage 1A lymphoma which is easily treatable. He lives in Koutiala so he will be coming and going for treatment and not staying at the hospital long term.

He isn't a talker and is quite shy. I am determined to make him my buddy by the end of treatment. :)

Wednesday, 24 August 2011

Pictures of some of the kids

Since Alou, Francois and Kadia all came in at the same time and spent months here, it kind of became a big family. They had a good time together.

Alou driving the red car...

Alou with his hat and the girls with their head wraps that I bought them when they all lost their hair.

This is so Kadia and Alou during the early months.

Alou pushing Kadia and her brother Amos.

Does it get any cuter than that?

We then moved up to the golf cart. This was the day before Alou left. My kids came along for the ride.

Everyone going to for a real car ride.

Francois taking a turn driving.

Let's not forget sweet Amos. We've watched this boy grow up at the hospital alongside of his sister.

Balla (Colon cancer)

Balla came in while a pediatric surgeon was here. He had colon cancer that was completely resected during the surgery. He came back about a month or so later to start chemotherapy. He has done very well with his treatment. They live far away so he will be staying at the hospital for the next few months because they cannot come back and forth.

Balla with a wound care patient and her mother at the hospital.

Balla is wearing a pair of seersucker pants that were sent for kids to have. I love seeing him in these as it reminds me of our years in Charleston.

Yanoussa (Wilms kidney cancer)

You can call him Yanoussa, Noussa, or Moussa. He answers to any of these. Somehow we thought his name was Moussa when he arrived and later found out it wasn't. We then thought it was Noussa but we were wrong yet again. So Yanoussa is it but I don't think anyone calls him that. These are the things in life here that I found humorous. How hard is it really to figure out someone's name? People want to be polite so they often won't correct you even if you call them the wrong first name. Regardless of the name you call him, he has a Wilm's tumor that has metastasized to his liver. When the visiting pediatric surgeon and assisting OB took out the tumor, it was so large that they thought it was a hopeless case and almost did not remove it. They decided they would take out what they could. Thankfully they did, because...

what was left of his cancer has responded great to chemotherapy! He has such a beautiful smile.

We have done several ultrasounds and with the last one we were unable to find the tumor or the spots (metastasis) on the liver. So it appears that his tumor has responded perfectly to chemo! We did extended treatment and now will change his chemo from every week to every 3 weeks for the next 5 months and then he should be cured. He has done incredibly well with all the medicines.

I am amazed at well all the kids do actually. They take the pain and nausea in stride. I think they are just used to suffering more, for life to not always be easy and for there often to be pain. They don't question this but just keep going. These are strong kids. Here is a more recent picture of Yanoussa with his hair gone from the first 3 months of chemotherapy.

Mamine (incurable bone tumor: Osteosarcoma)

When Brett told me to come meet my new cancer patient, this is where I found her, sitting in the waiting area watching a video in Bambara. I was struck by how beautiful and graceful she was. Mamine has osteosarcoma of the hip. She had had the tumor for months before she came to us.

We started treatment with a rhabdo protocol as we thought this was the initial diagnosis. After a sample was sent to the Us for a pathology report, we got the news that she didn't have rhabdo but osteosarcoma, a cancer we couldn't treat. This diagnosis wasn't terribly surprising as during the two weeks we had done treatment, her cancer almost doubled in size. She was no longer to lay down due to the pain. Her legs were understandably swollen.

Jake and I, along with a Malian pastor, spent a long morning with them to tell them we were unable to do anything else for her and that she could go home. It's so hard to look into her sweet face, knowing she understands what is going on but can't do anything about it. Somehow it's easier to send a family home when the child just isn't aware of what is to come. She knows.

I started visiting her weekly at her home. The first time I went I thought she might actually be dead. She wasn't and was actually doing well considering the circumstances. I visit her regularly with Carol who is a dental assistant at our hospital and a Malian pastor. Carol and I leave often feeling helpless and have looked into options such as sending her to the States for treatment despite our husbands' (and every other doctors') opinion that we can't do anything for her. We know this is true, but it is hard to sit there and have her mother ask you every week if we can take her back to the States and heal her. I can't tell you how many times we've had to explain to her that man can no longer do anything. It is in God's hands. We are praying for a miracle.

Francois (Lymphoblastic leukemia)

Francois came in a few weeks after Kadia. Another leukemia patient. He comes from the same village as Eclé, the nurse pictured here.

He did amazingly well with his treatment, even the steroids. His biggest issue was that his grandfather, who was known to be harsh, was his guardian during his time at the hospital. I mean, who really wants your grandfather when you are sick? You want your mom. You want someone who will hold you. So since he didn't get that from his grandfather, he sought it from us. If we didn't come and sit with him he would scream. Lay on the floor and scream for hours. I'm not exactly sure what changed, but thankfully a month or so ago, he stopped screaming. We all enjoyed him more after that! Patients still talk about screaming Francois.

He is a sweet boy. We actually took him back to his village this weekend with Alan (post to come later) as he is in remission and now only receiving his monthly dose of medication at the hospital. It is a bit lonely at the hospital now without Kadia and Francois around.

Sinata (incurable Rhabdomyosarcoma: Muscle cancer)

Sinata came in to the hospital with a rhabdomyosarcoma on the right side of her neck. It was affecting her eye. Brett told them to stay but the family went home only to return about a month later when she could no longer walk. Soon after, she couldn't sit up either.

We started treatment without much hope. We continued for a few weeks but did not see much improvement. We talked to the family about going home and though we thought they were leaving, I was surprised to see her still at our hospital after our return from our one month vacation in the States. We decided it was best to take her home so I did with another friend.

We left her on a dirt floor inside their tiny house. It was hard to leave her there. I thought for sure she would die within two weeks. However, he father continued to show up and ask for bandages for her pressure ulcer wound on her lower back and for pain medicine.

He started coming weekly asking for help and talking about her bed sore. I decided to go to their village (about an hour away) with a couple visiting college guys who were interested in medicine. Her bed sore was simply astounding. I won't go into details but once I saw it, I knew her end would be soon. We cleaned and dressed the wound and did all that we could. Sinata grabbed my hand and continued to put it to her face. When I asked to leave, she said I couldn't. I read her a book in Bambara. We had a sweet time. The next week her father came and told us that she had passed away.

You may wonder why I only have one picture of Sinata. The reason is simple. She arrived shortly after we sent Alou home. On top of that, we were not reading the bone marrows correctly and thought both Kadia and Francois (you'll meet him next) were not in remission and we were going to have to send them home as well. I was emotionally spent. I had told Brett I would treat Sinata only if I didn't have to learn her name. Of course, as you can see I did learn her name. I even painted her nails a couple of times. But I guarded my heart with her as I couldn't stand to see another child go home to die. Thankfully we were wrong about Kadia and Francois but we only found that out once we were in the States and Brett spent some time with Alan. So though I didn't get overly attached to Sinata, it was sad regardless to hear of her passing away and knowing that she spent her last few months in a small dirt home unable to get out and move around.

Kadia (Lymphoblastic Leukemia)

Kadia came in 3 days after Alou with basically the same exact symptoms and lab results. She also had leukemia. We started her treatment as well, right after Alou.

Kadia didn't do quite as well on steroids as Alou. :) She was a grump that whole time who hated any white person she saw. It was an exciting day when she would smile or even look at you since these were so rare.

Once steroids were over, however, she eventually turned back into herself. A sweet little girl with lots of spunk. I love her to death.

This is the Kadia we know now. Even though she doesn't love shots, she finally loves us.

She is actually in remission and has just returned for her first monthly dose of Vincristine which she will receive for the next two years. It was sad to see her leave the hospital, as she had been living there since December, but I am happy she is well and can go home.

Alou (Acute Myeloblastic Leukemia)

Alou came in the week of Christmas. His spleen was humongous. After consulting with Alan we decided to treat for ALL (lymphoblastic leukemia) since treatment for AML (myeloblastic type) in Mali would likely kill him from the side effects. He was such a sweet little boy.

I love this picture because it is so Alou. He was kind of aloof, but oh so sweet. He would always come when you put out your arms. Even during the extended induction and tons of steroids, he remained sweet. Once he lost his hair, I bought him a hat. More for me than for him because I just thought he looked so cute. :)

Though his spleen did decrease in size, there came a point where we realized he was just not getting better. The immunosuppression was killing him just as much as the cancer. After discussing his case with Alan some more, we decided it was most likely not ALL but AML, and thus too difficult to survive in MaliWe as a medical team tried not to think about this and kept hoping he would get better. Despite our efforts, it wasn't happening. He was getting sicker before our eyes. One day he even crawled to go see Jake because he didn't have the strength to walk. We finally decided to tell the family. I could hardly keep myself together when we planned to tell the mom. I went with a Malian nurse and he did all the talking. He just told her we couldn't do more and that they could go home. She just took it. Simply amazing.

He was going to leave on a Sunday. I said goodbye on Friday as I don't work the weekends. I then came back Friday afternoon with the boys. Then again Saturday...and Sunday. I'm thankful for that last visit. I guess he was excited about going home because he had more strength and actually smiled that day. It was great to see his smile one last time.

We aren't sure whether he is alive or dead, though since the family has not been back we are assuming that he has passed away. If he hasn't, it will only be a matter of time.

Kadi (Burkitt's lymphoma)

Kadi came in with an easily recognizable Burkitt's lymphoma. She arrived during the treatments of Rokia and Aboubacar. Her family came from Ivory Coast to get treatment.

She and her mother watched the week that Rokia and Aboubacar died. Rokia on a Monday and Aboubacar that Friday. Thankfully, that wasn't her fate. She was treated and is doing well. Her family actually returned to Ivory Coast.

I had helped as needed with other cancer patients. Kadi, however, was my first patient from start to beginning. I learned a lot with her.

Here are my thoughts from her last day of treatment that were written on my blog...
Today is a happy day because Kadi has finished her treatment. Kadi is all done! No more pokes! No more lumbar punctures! No more screams that are directed toward us. I couldn't help but think how neat it was to be a part of her treatment and to be able to say, "This is your last! I mean really, your last treatment!"I just felt like dancing.
I found it interesting as well that as Kadi has spent the last few months battling her Burkitt's lymphoma, I've been battling my fears and feelings of inadequacy. But here we were at the end of the journey, having accomplished something together. I started doing chemotherapy treatments with another American nurse, Jake. Really, at first, I was just present and he did it all. Then I had to try to place their IVs (yes, I am a nurse, but hadn't placed IVs in years). Then, the dreaded lumbar punctures...he and Brett made me do it. Those things weirded me out. I was not looking forward to doing these. But I did. And I now I do them without a problem. For Alou and Kadia, we had to do bone marrow aspirations. I watched Brett do their first ones and last week I did both of theirs for the end of the induction period. I am amazed at what I've learned in a short time. I'm doing things I never thought I would. And though I'm not surprised, the Lord has once again placed me in a role that scares me to death. Someone told me the other day that they didn't think I was a fearful person because I didn't act like it. Brett will be the first to attest, and did at the time, that I am in fact an incredibly fearful person (as anyone who knows me ) but I try to fight it. Faith isn't doing living without fear, it is doing what you believe you are called to do despite the fear.The Lord has worked wonders in my fears and teaching me to not worry about things I cannot change or what may happen. But I am full of fears. Working with HIV patients and children with cancer only spur on my fears. It's something I have to pray through every single day. I have to choose to not let my mind dwell on the what ifs. I'm thankful to have been placed out of my comfort zone and be forced to rely on the Lord. Working in these areas has also pushed me in the medical realm. I am doing much more than I ever planned to or thought possible. But there I was, the one who two months ago wasn't even pulling up meds without Jake or Brett around for fear I would do something wrong, putting in Kadi's last IV, giving her her last chemo meds all by myself. The Lord surely does use the weak things and I'm thankful.

I'm often amazed at how these families deal with the cancer. They act like it's not really a big deal. I've often wondered why and discussed it with other nurses. Jake made a good point the other day. In the States, we fear cancer. Cancer kills. Many other illnesses we have learned to treat and prevent but very often, cancer kills. And it kills our kids. It is something to be feared. Here, though, it's different. One in four kids are dying regularly in Mali. Malaria kills in Mali. Diarrhea kills. Pneumonia kills. The families here fear malaria. When a kid gets vomiting and diarrhea, they are scared to death. The first time Kenan got diarrhea here our nanny started bawling thinking that one she would lose her job over it and two that he might not make it. We just laughed. It's just vomiting and diarrhea. Nothing too serious. But that is what kills here. Cancer, however, is rarely known. Even if it takes a life, it takes far less than malaria. It's just not as big of a deal. It's just interesting. We hurt for these families, we shower the kids with treats and toys and whatever because we feel they are suffering so much. In our culture, cancer changes your life forever. It changes your family. And rightfully so. To me, that's how these families should be, but in general, they aren't. Not saying either way is right or wrong (though of course, I understand my culture and our response more) but just saying it is an interesting observation. We fear their child's cancer more than they do.