February 4th 5:40 a.m.
Canadian volunteer Jenna (yes Mom I’m sending her home safe and sound!) left us last night after a month here at Tumaini House and Joelle (Cindy’s daughter) returns to her teaching career in Korea today after her visit of almost three weeks. Our resident Aussie Lucy will return to university after two months next week. My hope for Jenna, Joelle, Lucy and ALL of our Tumaini volunteers is that they take away from their time here all that they hoped for and then some but hope that when assessing one’s contributions, to remember to measure from a perspective HERE and not back home. Jenna worked with Latifa day in and out for a month and is responsible for Latifa beginning to understand the alphabet. When Jenna would hold up a flash card with the letter “L” on it, Latifa wouldn’t say the letter (but she will) but “for Latifa”! Jenna you began that ball of comprehension for her and THAT contribution is ENORMOUS! To every volunteer who has, or will visit us here, please remember that each child here, before he or she runs, must learn to walk, and before that, to stand. You have and will do so much for our little ones!
**It is now 5:08 a.m. February 5th and I am just getting back to writing. You see, as I began work yesterday morning, in the quiet of the early day, (only roosters, dogs barking and the Muslim call to mosque), I thought I’d have some quiet to say thank you to our volunteers and to fill you, future guests of Tumaini House in on a bit of what goes on here, but here’s what happened . . .
Just after 6:00 a.m. Joelle wandered in with her cup of tea and asked if I might help by printing off her boarding pass . . . she doesn’t recommend Ethiopian Airlines by the way. "Of course", I said, and logged onto their site. Now let me remind you that here in Usa River we don’t have quite the “high speed” high speed internet we have at home, and many of the websites are very basic and very slow! Well, Joelle and I couldn’t get to her flight information. We were successful in accessing the site and then things locked up and I was unable to help. Around 6:30 the children start coming down for their morning hugs and cuddles and well wishes before they leave for school and as this is one of my happiest parts of the day I don’t miss it very often and so we cuddled and chatted and then I saw the Young Roses children off to the school bus. I made chai and then went to see a neighboring two room structure which may be available for rent as a school, returned from that, and then Mathilde, Lucy and I headed out to drop Glory at Dream for her monthly medical and to receive this month’s ARVs. (Dream is a wonderful free clinic for HIV+ people located here in Usa, pronounced Oosa River), but we received a call and had to pick up her mother, Amina, who has taken a turn for the worse again and could not walk and so we did that. We needed to pay the school fees for our Mana OVC children attending Uraki Primary School and then stopped to inspect the Chikira family’s progress. You will remember the family of four children struggling with absolutely nothing? Joelle you’ll like this news . . . we’ve got the roof patched and the sheet metal replaced which could not be repaired, the house has been remudded to withstand the oncoming rains, the fields are cut down and ploughed and wait for the rains to come and then we plant, 18 year old, acting parent Glory and her three younger siblings now have some pots to cook in and a kerosene torch and some clothes and dishes, and new locks on their doors, and the yard is clean and we’re hiring someone to dig a new pit for their toilet. They have food and we visited the younger three at Uraki when we paid the fees. Without delay or interruption all of this should have taken about two hours . . . BUT . . . well, things simply don’t happen like that around here. I had called the matron at Makumira Secondary School to confirm that Mary’s clinic day would not be missed (Oddo had it wrong, but Peter had it right) and she called back, just as we were heading home to tell me that yes, in fact today was her clinic day and we should pick her up, and so we detoured to do just that. “Picking up” a child at school involves a visit to headmistress and more waiting to obtain a pass for Mary to leave school, which turned out to be worth the wait because I took the opportunity to ask that all of our secondary students at Makumira be allowed to join us on Sunday for a picnic and some games and races! Mathilde and Lucy and I put this together for all of us, as a family to have some fun! Everyone will be together Sunday after church, well almost. . . Haradali students are joining us, the Amani boys, and of course us here - stay tuned, I am certain Cindy and Kal will have some wonderful new photos for you. Neema is cooking, AND baking AND making us barafu (freezies).
Soooooooooooo, we detoured to pick up Mary, who is looking tired but says she is fine. We worry about her because she is such a gentle natured little one that, should someone come along and bully her, she will not defend herself, nor I fear, tell us. In any event, we took her to clinic and I asked if I might speak with the doctor so that he could explain why her count is dropping. (We had been told [erroneously] that Dream uses a different method for counting and so interpretation would be different. I wanted to understand) . . . and so we waited. The clinic is wonderful and spacious and clean and the patients are given biscuits and juice. Mary first saw a very nice nurse who took her vitals, checked her weight and her height. I shared with her that Mary has a rash which we’ve tried to treat with antibiotics but to no avail. She said for me to wait for the doctor. We were then ushered back to reception where Hilda shared her recollections of Mary’s entrance interview. Mary began crying when she told her story of how she has lost both of her parents (to AIDS) and has lived with her Bibi who is simply too poor to get her to clinic. Mary had missed clinic many times in the months before we met and herein lies the problem.
The doctor explained that ARV’s work for a specific amount of time (Mary takes hers in the morning and again at night), after which, if not resupplied, the virus reflares, mutating, and building resistance to the drugs the patient ingests for suppression. Mary’s first line ARV’s have failed, we discovered yesterday. Her viral count is hitting the roof and her CD4 count has dropped to 21. Despite our care and the good food she has been getting, with the failure of her medication Mary has become a walking magnet for disease. She has full blown AIDS. The doctor was frustrated and angry (not with us I don’t think, but with the problems of “procedure” here). He very emphatically explained that we now must move on to a second line of ARV’s for Mary, that there is no going back . . . and then he dropped the bomb that blew my day apart . . . that if Mary’s adherence is not PERFECT, and she builds resistance to this second line, there is nothing further for her in Tanzania. He then told me, “this computer is asking me if I am certain I want to move to second line, because there is no going back and there are no further options . . . I am pushing the “yes” button, but you must, MUST know how serious this is.” I was rocked to my core.
Our presence and insistence on answers for Mary’s rash and misunderstood CD4 count got her further investigation where the doctor discovered that some paperwork errors had him assuming her struggles were not failure but nutrition related. By being there to explain that in fact Mary was receiving excellent nutrition and by pushing, he diagnosed that it is the medication which has failed. Grace was there as were Mathilde and Lucy and I am not certain they understood the ramifications of the doctor pressing that “yes” button but they do now.
After leaving his office Mary took us to the dispensary where we waited again. Time was passing and Joelle needed to leave for the airport and so, finally, Mathilde, Lucy and Peter, who was waiting in the parking lot, had to head home. Oddo was late to pick up Joelle and so Peter drove her. I send my apologies to you Joelle for not getting back to say goodbye but am certain you understand.
Now, remember. Mary is not a fighter . . . nutrition is imperative for her success. She attends a school where, although we have tried to ensure her milk and eggs and fruit daily, we cannot be certain that, a) they will not be intercepted and, b) she will tell us if they are, and so, after four hours at Dream we (Grace, Mary and I) walked to Dinah Bar and had a very late lunch. I reminded Mary of how much we love her . . . so many of us . . . everyone who meets Mary loves her . . . I reminded her of her great Aunt Mayre in Canada and how much she wants Mary to be healthy; of our American volunteer Mariel and how she and her family are working so hard to provide love and support and care for Mary, how hard I/we fight for her safety and access to what she needs and finally, how Mary MUST begin to fight for herself. We talked about dying. She was crying, I was crying. I told her I want to have her child sit on my lap one day and call me Bibi (grandmother).
We are going to keep her home for at least this week while her body adjusts to the new meds. She must return in two weeks to reassess – check for liver failure, etc. She is on some major antibiotics (again) to prevent something else from attacking her little body. Dr. Pat arrives on Sunday and will be of great assistance and we pray. Please join us.
I got home just in time to help the children with homework and then the power went out and so I could not finish writing and that was the day. I will share with you soon more details about our little home here but now it is almost seven on Saturday morning and at 8:00 a.m. I leave to visit Nelson (big brother to Kelvin and little to Mary and Reward) who is working so very hard at Ailanga Secondary School and will absolutely, without a doubt, graduate Division 1 and go on with a scholarship to university . . . he is an extraordinary combination of natural talent (required if one wants to succeed academically here) and determination and dedication and I love him VERY much! Oh, and just before bed, with the last of my computer battery I checked my email and discovered that Reward has received his results back for his first set of exams in his first term of his first year of university . . . three B’s and an A. Let’s celebrate that!
