Wednesday, 12 December 2012

Djeneba, burn

I happened to be over at the hospital in town the other day and thought I would try to find Djeneba to get a picture since I had heard she was doing well there. Since they had referred her to us we transferred her back once her skin grafts were completed.  I arrived while she was waiting to get her dressing changed, so she was not happy to see me, even though I kept telling her I was the one who gave her candy. :) The pictures aren't great because I was using my ipod and it was dark but the improvement is amazing so I'm posting them anyway.

This is her smiling, I think. Either that or she was trying hard to move away from me. :)

The top of her head. How amazing it is, especially considering where she came from. If you don't remember, you can click here but be warned these are quite graphic.

So glad she is doing better and so thankful for our partnership with MSF (Doctors Without Borders) who referred this girl to us and then took back over her dressing changes after her skin grafts were performed. Glad we can work together to see improvements in the lives of children. Considering the relatively limited medical care that we can provide in Mali, it truly is a miracle that she survived the horrific burns she suffered.

Friday, 30 November 2012

Blast from the past- Mamadou, Hodgkin's Lymphoma

From time to time I have seen Mamadou's brothers here at the hospital because they have been sick. One by one they have come in with malaria. I kept telling the older brother that Mamadou needed to come in so we could see him. He said he would bring him.

A few weeks he was here, but with severe malaria himself. This picture was taken a few days after treatment. Notice the SMILE! He never smiled with me during his treatments for chemo, but I guess I don't blame him. It was so good to see him doing well after treatment. I think he was even happy to be here knowing he was going to get candy without all the shots and medicine! :) 

So thankful for successful treatment of his cancer!


Fatoumata, Lupus (presumed)

Fatoumata came to us with eye swelling which had caused near blindness as well as overall joint swelling and the inability to walk. We believe it to be an autoimmune rheumatological illness, quite possibly lupus. She has been treated with corticosteroids as well as several eye medications.



Within a few days she was able to sit up by herself. After a bit more she began walking again. Her vision has also improved (20/100 with her right eye). She went home this week and is now coming back weekly for check-ups and more medication. Here is a picture of her with her parents before leaving on Monday.


They wanted a picture of Fatoumata and me today when they came back for the follow-up. So here we are.

Wednesday, 28 November 2012

Tetanus

From time to time we have cases of tetanus that come in. This is not seen in America because people have more access to vaccines. Vaccines are a good thing and prevent illnesses. I know they have gone out of favor with a lot of people but when you see the actual illnesses they prevent it makes it so clear why they are necessary. But that's all I'll say on that. :)

This boy came in rigid and unresponsive.

After treatment he was walking around and doing well. He has his arms up showing that he can extend and bend his arms which he couldn't do before.

This baby is still being treated here and is making slow improvements. One little vaccine for the mom during pregnancy would prevent this.

Wednesday, 21 November 2012

Moussa


Moussa passed away this morning. As I look at this picture it is hard for me to believe that the child I carried to the morgue this morning is the same child. Oh how he had wasted away to nothing. 

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.

I love Malian culture but one thing that I cannot understand is how they deal with grief. I am not saying it is wrong, it is just completely different than how my culture would handle it. I was the only one crying when he died. Our nurses looked at me like I was crazy. I cried as we wrapped his body and carried him to the morgue. Though he was only skin and bones the load was unbearably heavy. I hate carrying dead children. 

As I walked away, still trying to compose myself, a patient met me at my door. How I longed to go in the office and cry a bit on my own, but someone was there. And with that, the day went on. The fact that Moussa had just died was a mute point. Malians have an incredible capacity to deal with grief. God's will, they say, and continue to move forward. It may as well be the will of God but it stinks and hurts nonetheless. It is on these days that I feel like a fish out of water here, unable to comprehend and follow suit in their behavior. I want to scream, "A child just died! Don't you understand? We cannot move on right now. We need to sit and mourn. A child, a young, precious child died. I cannot act like nothing happened." But alas, this is not my home or my culture, so I try to respect their desires as much as possible.

I am thankful for having known Moussa and seen his sweet smile that lit up the room. Though at times he was a very trying patient for me, he was always sweet and undeniably cute. 

To all who knew him, I think he will be forever remembered with his big smile sporting his pinstriped suit (see here).

Sunday, 18 November 2012

Djeneba, burn patient

Djeneba left our hospital a few weeks ago and went back to Doctors Without Borders which is in town. This is the day before she left as she was riding around on the little car eating rice and sauce. She really started to like me before she left (probably due to the fact I gave her candy each and everyday). I wasn't prepared that she was leaving so it was a bit traumatic for me when they came and took her. I was hoping she would be around longer since she was such a sweet little girl. If in the future she needs more skin grafts we will see her again, otherwise her treatment will be taken care of in town.


Friday, 16 November 2012

Yanoussa/Moussa, Wilm's tumor

Dear Moussa has been with us two weeks now. It is sad because I took these pictures the day he got here. I thought he looked terrible then. Now, two weeks later, I think he looks pretty good.

He barely eats. He now just stays in his room, moving from the bed to the floor to the chair. He doesn't have enough energy to smile. He is literally skin and bones. Even the fat pads of his heels are hanging skin. 

Yesterday he told me to come and sit by him and he laid his head down on my shoulder. He mumbled words which I couldn't understand. I asked his grandmother. She said he wanted some da, a juice that is common here. Then he mumbles something else. She told me he wanted to go to church. She told him it was Thursday and not Sunday. Then he closed his eyes and rested, his energy spent. 

These are the times that cancer really glares its ugly head. What a terrible way to die, wasting away day by day while the cancer grows and takes away the strength of the body.

Monday, 29 October 2012

Soumaila, squamous cell carcinoma


This cute kiddo came in with a wound all over his head. I am in fact not going to show the picture since it is a little much. (It may not seem like I don't use discretion when posting pics but believe me there are a lot of pictures I do not post).

Soumaila had been burned several years before and then the wound area has actually formed into squamous cell carcinoma. This is a somewhat common occurrence in adults but not in kids. If the cancer has already spread to his lymph nodes then he is unlikely to be medically cured. His best chance is complete resection of the mass and any affected lymph nodes. This week Tim, our facial surgeon, will try to remove the nodes and do some reconstruction of his head.

It is sad to look at this sweet kid because aside from the head wrap he looks healthy and he is so cute. It's hard knowing that his chances of survival are slim.

Cleft lip and encephalocele, pictures are somewhat disturbing

We give out formula to many babies each week. Most are orphans, some of the mother's have special medical conditions that cause us to give milk and others have medical issues like this child that prevent them from nursing. 

This baby has a cleft lip and palate along with an encephalocele. She is now gaining weight and doing fairly well. At six months, Tim, the maxillofacial surgeon at our hospital, will be able to operate on her and correct these problems. I can't wait to see the difference!



Lassine, perinephric abcess


Lassine came in with this huge, foul smelling abcess that orignated in his kidney. As you can see the skin was necrotic from the infection. Working in medicine, especially in Africa, you get used to smells. This, however, was one of the worst. For days the smell permeated all the rooms around where he was staying.  He had surgery to remove the abcess and dead tissue, which included part of his 12th rib, and has remained in the hospital for dressing changes and antibiotic treatment. 

He is doing well, healing nicely and gaining weight. It's hard to see in the picture above but he was quite malnourished at the time of his arrival. Thankfully he is doing well now! Isn't he precious?


Elizabethi, again

Since the last post had a slight negative spin on the differences here in our work, here is a difference that I love: getting your hair done is part of the care of the hospital. :)

Elizabethi has returned to the girls' school in a village about 30 minutes from here. It is for older girls who have never been to school to teach them how to read and write. She enjoyed it last year and learned a lot so she was excited to return, but not without looking nice. :) So I had to find someone who could braid her hair for her before she left. I even had to get "meche" which is the hair extensions so the style could be extra special. 


I must admit this makes me happy. I love that we get to be involved, really involved, in our patients' lives. When we care for those with chronic illnesses they become like our children and we are culturally responsible for their well-being even as the years go on. Sure sometimes this can be a heavy weight when many people are in need of us but most of the time it's great. I mean, what women doesn't want hair appointments to be included in their hospital stay? :)

Things are never as easy as they seem

In the US we take for granted that most all children are in school and that the majority of 15 year olds could follow simple commands. As I've mentioned before, that is not the case here. There are many bright Malians, no doubt, I in no way mean to say that is untrue. The vast majority, though, of the patients we see come from uneducated families where we are lucky if one person in the household can read, especially when these families are from villages around Koutiala.

I've written about Elizabethi, one of our diabetics, many times. She is a sweet girl whose smile can light up a room. She, however, is not smart, as she herself would admit and does frequently. This struggle is only magnified because she never attended school. Trying to teach her about her medicines and keeping records of her blood sugar is a task.

We decided to start a new sheet to keep better records of her glucose. The picture is hard to see but basically it is separated into four sections (7am, 1pm, 5pm, 9pm) where she is to note her sugars. There are 7 columns so that this sheet could be used for one week. There are three places to write within each time slot of the day: glucose in the urine, protein in urine, and glucose on the glucometer. I didn't have the urine strips to give her on the first day so I told her how to use the glucometer and showed her where to fill in her sugars. I decided to highlight where she was supposed to write so she wouldn't get confused, or so I hoped. I went ahead and highlighted for the whole week which I questioned even as I did it and which did in fact prove to be a mistake. She wanted to get credit to call her mom and I told her if she could fill out the sheet correctly for two days I would give her money (20 cents) to call her mom. 



The next day we found the sheet filled out like the above. She checked her blood sugar SIXTEEN times in ONE day because she thought she was to fill out the whole sheet! She really wanted to talk to her mom! :)

Another day she was given the opposite of her insulin doses (40 units of her fast acting insulin instead of the 5U she should have gotten and 5U of the slow acting instead of the 40U). Quite a big difference. Completely different than every other day for the last few years. Brett asked her if she noticed that it was different. She said yes. He then asked why she didn't say something. She hesitated but said that if she questioned the nurses their response would have been, "What? Are you the doctor now?" She has learned not to question those over her, even if it doesn't make sense. Now I don't think our nurses would have responded that way (though they most definitely would at another hospital) but still it is sad to see that she is not able to be in control of her own health. We in the West try to empower our patients but that is rarely done here.

This is often the case in Mali, that a "simple" task turns out to not be so simple but ends up being days of learning for both the patient and me. 

Alou, facial swelling update

It has been quite some time since I updated on Alou. see here

His swelling continued to improve and then while we were on home assignment the prednisone wasn't having any good effect anymore and he even had a stroke as a complication of his nephrotic syndrome. He was in very critical condition with frequent seizures and we didn't expect him to recover. He was started on newer severe immune suppression medicines and he has recovered tremendously. He continues to take these medicines daily to prevent a relapse. Thank you for your donations to the MacLean Work Fund which pays for his medications.


Thursday, 18 October 2012

Habi, ovarian Burkitt's lymphoma

This beautiful girl is Habi. She has been diagnosed with ovarian Burkitt's lymphoma. Burkitt's, thankfully, is a treatable cancer with a good prognosis. She is about three weeks into her treatment and actually doing quite well. We arranged for her to stay in the hospital for the first 6 weeks of treatment just so that we could watch her closely and keep her away from lots of infections. Our previous kids with Burkitt's have had a hard time with nausea and vomited quite a bit. Habi hasn't really so that is a huge blessing.

One negative of the Burkitt's treatment is the number of intrathecal doses (medicine into the spinal column)  that the patient receives, 9 in all. We often give medicine for them to sleep through the procedure but for the other kids the often choose to have them without ketamine. We tried ketamine with her and she didn't do so well with that but she also didn't like them without pain medicine. We finally struck a deal. I put on numbing cream for an hr before the injection and if she sits still then she gets three pieces of candy. :) The first day of this was kind of funny as it went something like this... "If you sit through this I'll give you two pieces of candy"
-Habi: "No, three"  -Me: "Three pieces?" -Habi: "Yes" and we shook on it. So that is now the deal. I can stick her back without her being put to sleep and she gets three pieces of candy. And not just any candy. She doesn't like Butterfingers. She gave that back. Reese's peanut butter cups and tooties rolls are her candy of choice. :)

Saturday, 13 October 2012

Awa

This little girl is Awa. I met her mother while she was hospitalized before giving birth to triplets. Her mother also has an illness that can be passed in childbirth or breastfeeding to the kids so I worked with her a lot to make sure she had enough milk. We actually decided she would breastfeed two of the girls and the other would exclusively get formula. Because the case was somewhat difficult, we saw these girls a lot. It was sweet to watch them grow. Unfortunately, after one of our furloughs we came back to find out that Founé had passed away. This was very sad to find out. As the girls have gotten older I haven't seen them as much. This past week, Wassa, was sick with malaria. She has been treated and is doing well. It was great to see the girls and how much they have grown. This is Awa. She had lots of energy and giggles to share. So fun to see!


Oldie Goldies

We have been back for a month now and time has flown by. Soon after our arrival it was great to see our "oldie goldies," Francois and Kadia, who have been with us for years now. They are both doing well.



Showing off her new dress that I brought back for her. I tell you, this girl could be a model...if we could clean off her teeth a bit. :) She is so precious. Love her spunk.

Saturday, 1 September 2012

Yanoussa, Wilm's tumor

Yanoussa (see here) had returned home but just came back this week again complaining of stomach pain. He had exploratory surgery to see if they could remove the tumor but it was extensive and throughout his abdomen with no clear boundaries so they were not able to remove anything.

So what does this mean? It means we can do no more for him. It means aside from a miracle of God we will watch him die. It means that the sick, literal pain in the heart that we just experienced with losing Bele, will happen again.

I never really planned to do hospice care but it seems that has become one of my roles at the hospital. As much as I hate it, I love it. It is painful without a doubt. There is also joy in being able to love on a family and a child during their last days. We have the opportunity to love and care for them like they haven't been before. And though it really stinks, it is somewhat of a blessing. I can honestly say I am better for having known the children that have touched our hearts and for sitting with them as they passed.

These times never fail to remind me of our frailty as humans. Despite education and training and medicines, we can only do so much. We are able to treat, not heal.

Brett and I return to Mali in 10 days. I am oh so excited. It will be great to see the smiling faces of the kids we haven't seen in so long. It is sad, though, that when we look at Yanoussa's it will only be for a short time.

I must mention that though we all love Yanoussa, he is Jason's kid. They are buddies. This will be a great loss for him.

Nafongo, swallowed corrosive powder


Written by Jason, a pediatrician at the hospital:  Nafongo swallowed a corrosive powder used to make soap in Mali. It scars and closes off the esophagus. I had to dilate his esophagus with a flexible rod to stretch it open. He is doing really well and swallows with no problems now. He became my
shadow on rounds every day. Any time I sat down he’d come prop his arm on my leg.



Doing better after treatment. What a cutie!!

Djeneba, facial burn update: GRAPHIC pictures


Djenba had her facial graft a few weeks back.

Here is the patchwork on her face. We cannot grow skin like they do in America so they take pieces from other places and stitch them together on her face. Only time will tell how this will all take.

I am amazed at our doctors at the hospital. We do not have a plastic surgeon or even a general surgeon yet our OBs and a Dutch tropical medicine doctor do so much outside of their scope of practice. It is simply amazing what they have learned to do. 

Friday, 24 August 2012

I hate death (Bele: wasting disease/TB)

I hate death. I hate even more not being there when it happens. Today Bele, a child who came in last fall completely wasted and close to death then but who recovered and was doing very well, died. I followed him, his sister and mother on a regular basis. We saw them often; we even visited their village as you can see in the picture. This was in December, a few months after starting treatment.

I sat with his dad that day in December as he talked about how Bele had left dead and come back alive. He had heard reports that Bele had passed away, then found out that he was still alive. I saw the joy in his eyes as he talked of his son who was now doing well. There was hope where they had been none before. It was so special to have seen his improvement and healing. 

Bele was a sweet kid. He didn't talk a lot but he had a precious smile. The chubbier he got, the cuter he got. I tried to help with that in anyway I could by given candy and chocolate as much as possible. :) He would run up and hug me when he saw me. His face would light up. So would mine. He was my buddy. 



Unfortunately the illness he has had since birth was too much for him. He had suffered too long before treatment. The illness had taken its toll and shut down his kidneys. There was nothing that could be done. 

Thankfully, I skyped with him two days ago. Jason had told me he was not doing well and I just wanted to see him again. He sat in front of the computer breathing heavily. He smiled and made a little laugh when I told him I'd be bringing him candy and chocolate for him when I got back. Oh how I wish I could have given him his candy. 

Death just stinks. Especially in a child. I thought about waiting to write this post later, once I had composed myself a bit. But this is a part of the job. The terrible part. The part that breaks your heart. And actually physically hurts. What makes it worse is that we do this again and again. Death after death of little children, who if they were in a different country would probably not have died. The families aren't to cry over this loss. They move on. That makes me mad. Not at the culture, but just that so many children can die unnecessarily and the rest of the world doesn't stand up to do something about it. This should not be acceptable. 



Friday, 17 August 2012

Djeneba, facial burn (graphic pictures)

Djeneba came to our hospital through Doctors Without Borders who work in Koutiala after she fell face first into a fire. They were originally told to go to Bamako to see the pediatric surgeon there but when they gave them the run around and did nothing, they ended up back at our place in hopes that she could have a skin graft. Amazingly, this is some improvement over what she originally looked like, according to Jason who feared she had lost her lips, nose and her eyelids were charred shut. Her lips and eyelids are intact but she most likely has lost part of her nose.




Sitting with a quilt given to her and a picture of the people who made it. (at least I think that is who is in the picture).

I sit in amazement with what comes into the hospital. Simply mind boggling. What a road this little girl has ahead of her.

Wednesday, 1 August 2012

Yanoussa, Wilm's tumor

Here is an updated photo of Yanoussa after a month or so of treatment. Even despite the chemo he has gained weight and looks so much better. 

Really incredible when you consider what he looked like just a few short weeks ago when he arrived after his relapse of cancer.

And another exciting note is that he is no longer screaming as much when getting his medications. He used to cry, I think for attention, but it was so hard to know whether we were really hurting him or not because his screams were so loud and during everything we did, even if we barely touched him. Jason and Kristen say that now he is handling it better, especially when the older boys are around. :) 

Kristen did mention, though, that he seems to be tired of all the chemo and treatments and desires to go home. It's hard in Mali because they don't really understand cancers. Once someone starts to look better or the mass is gone, they feel they are better. It's often hard to finish treatments (for many things, not just cancer) once the obvious problem has been removed. It is hard for people to grasp that though physical signs are better, problems can still be occurring inside where they can't see. Hopefully Yanoussa will be encouraged and have the desire to follow this through.

Wednesday, 27 June 2012

Josué, osteosarcoma, has hair again!

It seems Josué's hair has come back! It just happens to be blonde and soft, exactly like Kristen's. Maybe our next project will be Locks of Love! :)

Isn't he just precious? He continues to do well.

Sunday, 17 June 2012

The guys who really do all the work

In case anyone thinks we (non-Malians) do most the work, let me set the record straight. We are nothing without the Malians we work with. These guys are the backbone of pediatrics. Without them, the hospital wouldn't function. They take call, run the outpatient clinic, round on inpatients, do premature baby care, wound care, cast limbs, circumcise infants, run the sickle cell program, help with all the social issues in the families, translate for us and cover up all our cultural mistakes. :) God has really blessed us with these guys.


From L to R with English version of name in parentheses: Lazar (Lazarus), Eclésiaste (Ecclesiastes), Joseph, and Esaï (Isaiah)

Friday, 8 June 2012

Kids at the hospital

Jason took this great picture of kids currently receiving treatment at the hospital.
From L to R: Yanouusa with a reccurence of his Wilm's (kidney) tumor; Josué with osteosarcoma (bone tumor now post leg amputation); Kadiatou with Burkitt's lymphoma of her ovary; Yuhana a type 1 juvenile diabetic in for insulin adjustment; and the little brother of Kadiatou. 

Aren't these kids precious? That's what makes me miss being in Mali- seeing these sweet faces. Sure they can cause trouble and sleepless nights trying to figure out how to best care for them but they are so special. What a blessing to get to know them!


Mamadou, Wilm's tumor

Mamadou has finished all of his treatments! He is done!! Somehow, the kids are never as excited as we are on the last day! :) I think in all of his pictures he looks exactly the same. Sitting beside his father with an expression of fear and sadness on his face. He is one of the youngest kids we've treated and because they lived close to the hospital, he didn't stay hospitalized long. I think that's how we won over the other kiddos. They saw us on enough days that we didn't poke them that they began to trust us. Poor Mamadou just got poked whenever he saw us. Even all the chocolate and candy we gave him didn't help. :) 

Thankful for another child that has been successfully treated!

Kadiatou, Burkitt's lymphoma

Kadiatou just finished her treatment at the hospital and is doing well! Here is an updated photo of her prior to returning to her home in southern Ivory Coast near Ghana. Thank you to those of you who give to the cancer fund that enables us to treat patients such as Kadiatou!


Elizabethi, type 1 diabetic

Our dear Elizabethi came to see Kristen at the hospital recently. Our girl has become a young woman. She has really grown up. She has finished her first year at the girls' school we sent her to and she can now read and write. It's neat to see how well she has done at the school. The director's wife has taken her in as her own and really watches out for her. That is a comfort to us as we are the ones who sent her there yet aren't able to be physically present to help her. 


Sunday, 29 April 2012

Mahamadou, Wilm's tumor

Our other Wilm's patient, Mahamadou is still undergoing treatment. This picture was from his treatment the day before we left Mali. He is now only coming every three weeks for treatments which is nice for him. He is a sweet little boy but he hates us. :) The only consolation that we can give for sticking him is chocolate. And believe me, we give it. Whatever candy he wants and however many he wants, he can have, at least when I am around. I am not above bribery. :)


Thankful he is doing well and hoping it stays that way.

Kadiatou, ovarian cancer (Burkitt's lymphoma)

Kadiatou came from the border of Ghana and Ivory Coast. Her father farms cocoa and coffee. They are of Malian decent though she nor her parents were born in Mali. She came to us with abdominal swelling. A mass was seen on ultrasound and soon after she had surgery to remove the tumor. As we normally do, we sent her biopsy to the States and found that her cancer was a Burkitt's which is endemic to sub-Saharan Africa. Thankfully, this is a fairly easily treatable tumor.



Here she is after surgery soon before we left. She would smile, just not on camera. :)

Jason and Kristen say that she continues to receive her treatment and is doing well.