Wednesday, 3 July 2013

Update by Dr Jason

We have a new crop of kids at the hospital and, as always, I get a bit attached to them.  The three kids in the picture below are three of our longterm patients.  From left to right: Issa, Hassim, and Mohamed sitting in my office where they often hang out (and fight with each other).  


Issa came to us several months ago with two severely deformed legs.  He has Blount's disease which cause extreme curving of the leg bones.  We're fortunate in that we have access to a CURE surgical hospital in Niger (a country east of Mali) where they do free operations for kids in need.  We were able to send Issa there for a surgery that involved breaking both of his curved legs, resetting them, and casting them until they heal.  Now he has straight legs.  Both of his legs have been in casts for several weeks but he has managed well.


As you can see, getting around the pediatric ward (and all of the hospital for that matter) has not been a problem for him. He is an expert on that skateboard. Seriously, he leans forward, pushes with his hands, and off he goes.  He's everywhere!  He's one of the cutest kids around. To be honest, though, he's a handful and I have to make him leave my office so I can get work done because he talks nonstop.  That lasts for about five minutes and he's back :-)  We've been able to take one of his casts off and the other one will come off soon.  Hopefully he'll be up walking in the next couple of weeks.


Hassim is a garabout.  Sometimes when very poor parents cannot feed and care for their family, they will "give" one or more of their children to a marabout (a "holy" man) who will take over the care of the child.  Ideally this means caring for him, educating him, and feeding him.  Unfortunately, the reality is that garabout boys are sent into the streets to beg and bring their wages back to the marabout.


Hassim was discovered by one of my teammates who feed garabout boys twice a week.  He noticed Hassim had a very swollen face and brought him to the hospital where he was diagnosed with Burkitt's Lymphoma. It's a treatable cancer and Hassim has done extremely well with his treatment.  As you can see in the picture on the right, his jaw is much less swollen.  Hassim also developed an infection of his jaw bone and had to have part of it removed.  He's recovering well.  Fortunately, Hassim's marabout is a pretty nice guy and has allowed Hassim to be treated at our hospital, despite our differing beliefs. Hassim finished his last chemo cycle this week and went "home" today.  It was a bittersweet goodbye.  


Mohamed is another one of our cancer kids.  He has what is called a rhabdomyosarcoma.  It's a type of muscle cancer and he had a large tumor removed from his right calf muscle.  He will also require chemotherapy.  


Mohamed's mother is a sweet lady and dotes on him.  He's quite a mama's boy.  She had to leave him this week in order to go home and help with planting crops (rainy season/planting season has started).  His sister is now with him but he cries for his mother.  It's sad and highlights the difficult decisions mothers and fathers have to make here in Mali.  I can't imagine a mother back home leaving her child at the hospital in order to go plant crops.  But, no crops means no food for next year. 

Thank you to all of you who are able to give to our Koutiala Hospital cancer fund or our indigent fund which enables us to treat these patients and many more like them!

Sunday, 28 April 2013

Soumaila, squamous cell carcinoma

It was sad to see this sweet boy go home. If we could have figured out how to make it so he still needed treatment, we would have kept him forever. 

He is so precious. He could repeat any English sentence you told him. (I've tried several times to upload some videos of this but it won't work.) He would always run errands for us. You could ask him where someone was and he knew. He was aware of all the comings and goings of people, whether that was staff or patients.

pumping up soccer balls with a visitor, Patrick

We talked to his father when he came to pick him up to make sure he would go to school. He is so bright we  didn't want him to be healed but not get an education. The father has promised to send him and we (several from the hospital) are committed to providing whatever he will need financially to go to school.

It is always bittersweet to see these kids go. Happy for their healing but sad for the void that is left at the hospital. Yet, more kids will come and fill in those gaps and steal our hearts, even when we think there could be no others as precious as the ones that leave.

Afternoon Drive

After the kids have stayed at the hospital for awhile, they start wanting to explore more places, ie our houses.  So they all hopped in the car with Brett to come visit. Brett called me to tell me to open the gate and as I opened our front door to walk outside I could hear chanting, "Sheri, Sheri, Sheri!"and I knew we had visitors. 

They were thrilled to see our house, except for the dogs. We had locked them up in the goat pen but they got out and all the kids freaked out. But aside from that this mishap, they all enjoyed seeing the toubab's house.

I love Adiara's face here. She's looking at our neighbor as if to say, "Why are you looking at me? Leave us alone. This is OUR car." :)

These are some of the special times we get to have living here. I don't think any US hospital would let us just drive off with 5 patients and two extra kids in the car, just because, especially since we didn't even ask their parents. :)

Sunday, 24 March 2013

Kadia (leukemia) is D.O.N.E.!!!!

 After two years of coming each month for a dose of Vincristine and a refill on her daily medications, she is finally ALL DONE! I cannot believe it has been over two years that we have treated this sweet girl.

She has really started to grow up, she's getting taller and looking really good. She will always be my girl. How can you not be head over heals in love with her?

On day of arrival and diagnosis
During her induction chemo, feeling awful

All done!
As you can see, the kiddos have eaten their fill of tootsie rolls and various other candies. They come to me daily for their candy ration. We maybe treating their cancer or various other aliments but we definitely aren't helping their teeth. :) (Honestly, though, Carol is a dental hygienist and she has worked on all the kids' teeth that have lived at the hospital for any period of time. They do all have tooth brushes now.)

I will miss seeing my little girl each month but oh so thankful that she is in remission and doing well!

Josué (Osteosarcoma) and Habi (Ovarian Burkitt's Lymphoma) finished treatment

In December (how can I be this late in posting??) Josué and Habi finished their chemo treatments. We celebrated with cake, their choice. They really did well and it is sad that they are no longer at the hospital, sad for us, good for them! :)

Habi was actually quite sad to leave us and didn't really want to go. I am thankful that despite their treatment, loads of shots and lumbar punctures that they come away knowing that they are loved and valued. In some ways, that is the best thing we can give them.

Our little party with Soumailla (Squamous cell skin cancer on his scalp) and Chaka (double amputee) and Jessica. Jessica and Kristen's office is the hang out spot for inpatient kids who are staying for long periods of time.

Josué at arrival
Finished with chemo, eating his celebratory cake :)

Josué being Josué. He was a silly kid. It definitely took time for him to warm up to me, but I think he did. He would joke with me all the time. :) I do think he came around. He is now back in his village walking on his prosthetic leg and doing well.

Tuesday, 5 March 2013

Koutiala Pediatric Sickle cell and Cancer Blog

Our current visitor and good friend pediatric hematologist-oncologist Alan Anderson has been updating his blog during the last 2 weeks here in Mali. There are some great pictures and updates about how our children with cancer and sickle cell are doing, as well as how we are screening more and more children for sickle cell to prevent early childhood death and disability. Be sure to check out this wonderful blog:

Adjara: Hodgkin's Lymphoma but responding great to chemo

Friday, 22 February 2013

Burkitt's Lymphoma: 4 new children in 1 week

Burkitt's Lymphoma is the fastest growing type of cancer. In two months it can grow from the size of a pea to that of these masses below completely disfiguring the face. This type of Burkitt's lymphoma, preferentially arising near the jawbones is seen solely in countries where malaria is present although the exact reason for the link hasn't been fully proven. Thankfully it responds very quickly to chemotherapy and if all 6 courses, including 9 doses directly into the spinal fluid, are completed, the chance of cure is > 95%. In our first week after returning from our temporary withdrawal to Burkina Faso, we received 4 new cases of Burkitt's. Three of the jaw and 1 of the ovaries, which is another frequent location for Burkitt's in Africa. Three of these four also had metastases throughout the abdomen which will typically also disappear with chemotherapy. 

Here are 2 of the 4 at their arrival followed by a group picture of all four accompanied by our other patient with Hodgkin's Lymphoma. 

Bourama at arrival. His abdomen was full of large masses as well.

Adama's bilateral facial masses had rapidly progressed over 2 months  before they heard about our hospital, despite living over 2 hours away.

Left to Right: 
Maimouna: Burkitts of the ovaries now post surgery for removal and biopsy. Started chemotherapy 2 days ago. 
Ajara: Hodgkin's Lymphoma: Doing amazingly well after 2 cycles. Rides a push scooter all over pediatrics like she owns the place. : )  She had failed 1st line Hodgkin's chemo so she is on a more aggressive protocol now.
Bourama: Finished 1st cycle for facial Burkitts. Great improvement already from above picture
Adama: Finished 1st cycle for facial Burkitts. Amazing transformation already from above picture. 
 Daoda  : Received 1st dose for facial burkitts. Also great improvement.
Giving to the Koutiala Hospital Cancer Fund will enable us to continue treating these children protecting them from otherwise certain demise. 1 case of Burkitt's lymphoma can be cured for $1000. Thank you in advance for considering giving! Any amount is appreciated! This tinyurl leads to the secure link:

Friday, 11 January 2013

Arasidatou, burn update

We hadn't seen Arasidatou in quite awhile but came to us the other week through MSF (Doctors Without Borders) who work in town. See here and here for her story.

I didn't even recognize her when she came. No one did really. I kept thinking her eyes looked familiar but was shocked when I realized it was her. She looked so good!

 But then we opened up her dress to look at her back. Not so good. We knew her back would look something like that because of the graph but didn't realize how bad off the neck area was. She will go back to surgery eventually so that she can move her neck. Unfortunately because her burn was so large, they used most all the skin they could for the grafts the first time so she really has no area left to take. The surgeons have decided to wait until they can get better blades so that they can take the skin from the same spots as before. (What we have currently is not good and does not remove the skin easily and cleanly). So hopefully within this year we can get what they need and Arasidatou can have her surgery.

Arasidatou and Djeneba enjoying their candy canes together. They looked so cute together. Together they show the spectrum of response to long hospital stays. Arasidatou is fearful and cautious. Djeneba comes right up to us and sticks her hands in our pockets to find candy. :) Often she is lucky and finds something. (Djeneba has been coming twice a week lately for dressing changes).

Tuesday, 8 January 2013

Faces of Nephrotic Sydrome

Nephrotic syndrome is very common here. Often we will see at least one new case a week. They are easy to spot as they come in all swollen, mostly in the face. If you didn't know that meant they were sick, it would be cute.

 This sweet little girl, Kadiatou, is the example of the sad cases. She came in (too) late in the game. Her creatinine was unreadable it was so high. She didn't urinate for the first couple days she was here. But then, she started to improve. She was walking around and doing well. The swelling was present but decreased. She became one of my regulars for getting candy. We began to hope. But then the swelling increased more and her creatinine began to rise again. That's the worst. To see progress and become hopeful only to see the child relapse in a worse state than before. The family asked to take her home that she could die there. We resisted at first but let her go. We got news only two days later that she had passed away. 

At arrival                                                                     The day before she left

Sidiki is another story. He came in swollen and was admitted. He progressed nicely and went home. He returns each week for check-ups. 

This picture was taken last week as he waited for his follow up. Looking so much better. (I realize the two pics don't look that diferent but there was noticeable difference in his overall swelling).

As I sit writing this post, in hopes to show the sad and happy cases, the nurse who works with these kids just came and told me that Sidiki has relapsed this week. Still we are hopeful but it isn't quite as happy as the outcome could have been.