Ramsey Prayer Update - A Change of plans
For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. Jeremiah 29:11
In our most recent prayer letter, we mentioned that it looks like Shevawn is in the early stages of Multiple Sclerosis, but that it did not seem like it would interfere with our plans for her to go to Ghana and co-lead the Discovery team this summer (as she currently has no symptoms and feels great). We asked you to pray as we learned more about MS and considered treatment options including a possible clinical trial that her Neurologist referred her to. Since that time, she has had several appointments during which she has asked many questions as well as undergone hours of screening for the Oracle MS study, which has very narrow criteria. A few days ago, she found out that she met all the parameters and was accepted into the study. After much prayer, (ours as well as yours!), time spent in research and seeking counsel as well, we have decided that she should go for it. This does change some things for us however, in that the study Dr. felt it would be best for her not to go to a place where “urgent“ medical care was not easily available this summer in case she develops any complications….and although this type of care is available in parts of Ghana, we will not always be in places where we will have access to it. So we have decided that it would be best for Shevawn to not go to Ghana this summer after all. For those of you who want more details about the Oracle study, we have added that to the very bottom of this e-mail....but for those of you who are interested in the bottom line, here are some things we would like you to join us in prayer about:
§ Shevawn begins the drug study tomorrow (Tuesday) February 23rd. Please pray for God’s will to be done in terms of[] what drug/dosages she is assigned, possible side effects and how her condition is affected. Pray that she will choose joy no matter what….and for her witness with all the medical personnel that she has been and will continue to see on a frequent basis.
§ Strength for Shevawn to be able to continue the training she is doing with the various Discovery trip team leaders online….and the ability to adapt and post the material in a timely manner. (This whole project is taking longer than hoped… so far she is just making her deadlines.)
§ God’s provision for two assistant-leaders for the Ghanaian trip; one to replace Shevawn (although John assures her that she is irreplaceable 8-) and a Ghanaian leader. We are considering several possibilities, but nothing is decided yet…
§ Wisdom for John and Ryan as they continue to interview and process applicant for the 2010 Discovery trips
§ That those whom God is nudging to go on trips this year would follow through in applying….and quickly, since our 1st deadline has passed but we still have openings.
Thanks so much for the many wonderful e-mails and prayers that so many of you have sent our way. We are always so blessed by the many ways we are held up and supported by so many of you….but I must say we have a renewed appreciation for all of you during this time in which we are still only beginning to make relationships in our new church home. We would feel much more alone if not for so many of you; we cannot thank you enough!
In His love;
John & Shevawn Ramsey
So I pray that God, who gives you hope, will keep you happy and full of peace as you believe in him. May you overflow with hope through the power of the Holy Spirit.
-Romans 15:13
Oracle Drug Study Summary
The Oracle MS Study is evaluating the use of oral Cladribine on patients who seem to be developing MS and who have evidence of lesions on their brain. The FDA is currently in the final stages of approving Oral Cladribine for MS after the recent completion of the Clarity Study about a year ago, which evaluated the use of oral Cladribine as a therapy for people who have had MS for years.. (Intravenous Cladribine was approved 6 years ago as a treatment for some cancers.) The results of the Clarity Study indicated that oral Cladribine was in many ways more effective than other drugs currently being used for treatment of MS. Many people with MS and their Dr’s are very excited about the possibility of an oral drug that has to be taken only a few days out of the year and one that seems to be well tolerated, as the current drugs used to treat MS have to be injected anywhere from once a week to once daily by the patient.
MS is a disease in which some parts of the immune system are overactive; Cladribine , it seems, reduces some of the over-activity. In addition to relatively minor potential side effects (like flu-like symptoms) the short-term side effect of biggest concern is that Shevawn could get sick more easily because her immune system may be significantly weakened for sometime; this is why the study Dr felt she should have access to medical care for at least the first year of the study. As for long term drawbacks to this drug, there is no way to know what kind of long term consequences there may be, as no one has been taking this drug for a long period of time. We are trying to weigh the risks realistically, especially in light of the facts that she is not planning on getting pregnant and is well into her 50’s. 8-)
While taking this drug involves some risk, it also has some big pay offs. Shevawn will be constantly monitored (at no cost to us) while taking a drug she would probably choose to take without such in-depth monitoring when it does becomes available…and when she would be able to qualify for it. Being on the study also has the potential to delay at least some of the medical bills that will begin if/when her MS progresses (the injectable medications are extremely costly). The study duration will range between 96 weeks and 5 years, and she can decide to opt out at any time.
One third of the participants in the Oracle study will receive a placebo, the other two thirds will have Cladribine; divided evenly between a lower dose and a higher dose group. The study is double blinded, which means neither Shevawn nor any of the medical people who are taking care of her will know what she is receiving…but all will see the results of the many medical tests they will run periodically to see how her body is doing (blood work, ECG’s, MRI’s, etc.) In some ways, we see this randomization as a benefit as well. When Shevawn asked the Study Dr what he would have recommended for her if she didn’t’ qualify for the study, he said that it was impossible to predict and therefore even really recommend what she should do. That’s because, based on her history and tests, there’s a definite possibility that she would never have another episode…in which case, she would, of course, not want or need to be on any kind of treatment. But, it is also just as likely that she would go on to have more episodes, and if that happens, she would wish she had begun treatment, as the treatments cannot repair damage, only delay episodes from occurring….and damage occurs way before you experience an actual episode. Soooo….we feel we should move ahead into this opportunity which we did not seek, but God seems to have provided….and trust Him for what drug/dosage Shevawn actually receives.
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