Good news all around! A big thank you to everyone for your contributions so far. This past Wednesday, 15 October, Joy received her oral iron chelator pills that will last for the coming month. She also received her monthly blood transfusion as scheduled.Share This Update!
The doctor discussed with her the option of taking only 1 bag of blood this month to help limit the accumulation of iron. With only half the usual amount of healthy red blood cells however her body lacks enough oxygen and side effects including headaches, dizziness, and lack of energy among others become more pronocunced. After discussing the pros and cons, they decided to keep her at 2 bags this month. Joy is making decent progress with the iron chelator pills and so far has not caught a cold or any other illness that would make her have to stop the medicine.
She also passed her exams at school this week! Joy is very proud to have accomplished this and looks forward to early November when schooling starts up again after a short break. We want you to know that your donations have played a big part in keeping her healthy and functioning well, enabling her to work towards her GED. THANK YOU!
We'll be in touch next month :)
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Our beloved donors, yesterday Joy’s iron levels were tested and results are in! The new count is 11,450; a reduction of about 1,000 ng/dl from 6 months ago when her iron level was 12,500.
Of the 6 months since Joy’s last testing, there was about 1 month where Joy was unable to take the medicine due to complications with her sickness. If she stays well this time and doesn’t need to stop the medicine again then perhaps we can see a slightly better rate of reduction at her next testing. The doctor will test every 3 months from now to see how well she progresses.
Getting under 2,500 ng/dl is vital because statistically the survival rate goes up for Thalassemia patients once they cross that threshold. At the rate of 1,000 ng/dl reduction every 6 months, we are looking at about 4.5 years to get here there. We still hope to afford adding the injectable iron chelator to her treatment and reduce the iron toxicity as low and soon as is possible. Joy is extremely grateful for the donations she has received to date and continues to hope that we can reach our funding goal. Please keep Joy in mind and share her story, we have faith that success is in our hands!
Thank you to each and every one of you, we’ll be sure to keep you posted with future updates :)
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We'd like to notify that donations to Joy will now be handled through WePay. PayPal has notified us that it can not process donations for Joy becuase it is "not licensed to process donation payments in all parts of ther world".
Fortunately Joy has already accessed the funds donated so far, PayPal's policy takes effect from now going forward. Youcaring has been great in assisting us to make the switch to WePay however, so there is no interrruption to our fundraising efforts.
Joy continues her studies and is preparing for exams on 21 September. With her next doctor's appointment on 17 September and preparations for exams she is keeping quite busy. Every day she takes 12-14 pills of her oral iron chelator which is possible because of your generous donations. We are making progress!
First of all a big thank you to all of Joy's supporters... we are nearing double what we had in donations last update on August 10! The comfort that comes with your help which allows Joy to actually plan how to tackle her problem is a true blessing that means more than you probably know. Share This Update!
This week Joy recived her monthly 2 bags of blood and 400 pills of the oral iron chelator GPO-L-ONE which will last her a month. Our ultimate goal is get her on the injectable chelator Desferal as well, but will hold off for now as the pump used to take the medicine is a one-time purchase of about $1,000 (it straps to her body for 12 hours/day and delivers the drug continuously), and the medince itself is expected to cost about $1,000/month. This requires us to get closer to our fundraising goal before adding Desferal to her treatment, yet the fact that she is getting her blood and taking the oral medicine alone right now is a big step in the right direction.
Unfortunately the doctor did not test Joy's iron level this visit like we expected. Instead tests were done on her kidney and liver functions, which are also affected by iron overload and even the oral medicine to a degree. The iron level test is scheduled for 17 September however, so despite our disappointment in not having that test done this week we look forward to next month and will share the results with you all. Regarding her tests done this week, no news is presumed to be good news but at the next appointment we will learn more about the implications of the results to be sure.
In the meantime Joy is bogged down with schoolwork which is a wonderful distraction. Joy and her son Karim also celebrated his 7th birthday this month! She thanks you for being so kind and sharing your love. We will post again to keep you in the know, please share and keep Joy in mind. Thanks and have a great weekend!
Thank you so, so much to our lovely supporters! You have helped raise $1,700 already and Joy is over the moon that help has come in from every one of you. Your generosity makes a world of difference and words can't express thank you enough. Joy's next doctor appointment is August 20th where she'll recieve the next blood transfusion and get her next lot of the oral medicine GPO-L-ONE. Her current iron levels will also be tested this visit, so we anxiously wait to see the results. Usually the results are given on her following visit a month later, however we will ask to get them as soon as possible and share with you all. Share This Update!
Thanks again to our supporters and for everyone's well-wishes. Enoy the rest of your weekend knowing that we are so grateful for you!