10-17-14. I have had a lot of people asking me what we have decided to do with Morgan. I thought I would update you with what I know for now. We were given four options from Dr. Ginn on Tuesday. Wednesday Jerry, Morgan and I talked about her options. She said she did not want to do the IV chemotherapy that was offered at Childrens Mercy. She did not like the thought of an IV and she did not like the side effects. She also said she did not want to take the chemo medicine that has been approved for use with gliomas. She said she wants to do one that is made just for her kind of tumor. That left us with the two clinical trials. One was being done at St. Judes in Memphis and the other was being done at a hospital in Grand Rapids Michigan. The St. Jude study was a phase 1 study meaning they were just trying to decide what the dosage of medications the kids could tolerate. The Michigan study was in a phase 2 trial which means theyve already decided what dose they could tolerate and now they want to do further testing. Both medications are oral medicines so no IV. Thursday after work I called Dr Ginns office to see if he had gotten any further information on these two trials. His nurse said he was going to be calling me back in a little bit. He called around 530 on Thursday evening. We put him on speaker phone so that Jerry, Jacob, Morgan and I could all hear what he had to say. We told him she did not want to do the IV trial at Childrens Mercy or the already approved chemo medicine. He said the St. Judes trial was not accepting new patients. However the Michigan trial is accepting new patients so he is going to contact them to see if we could be accepted into the trial. Today they faxed me the release of information from Childrens Mercy so they could send all of her films and labs to the hospital in Michigan. Now I guess we have to wait all weekend and probably most of Monday before we hear anything from them. Dr Ginn did say that the study involved going to Grand Rapids for the initial evaluation and lab work. They would send us home with the medicine which is a pill that she would take once a day. We would then have to return to Michigan in two weeks for an evaluation. Then we would go back again in two weeks for another evaluation. The study would involve her being evaluated every two weeks. He thought that after the first one month they would allow her to go see him at Childrens Mercy for her evaluation at least every other time. So hopefully we would only have to go to Michigan once a month after the first month. At the end of month two they would do another MRI to see if the medication has helped any. He was also checking to see if they had any funding available to help pay for her travel expenses. The study at St. Judes was fully funded so we would not have had to pay anything. The one in Michigan is not so hopefully they will have some funds available to help. Morgan is doing okay. She is not ready to give up. She has just been so very tired and she continues to be dizzy. She does complain of a little bit of a headache almost every day. Tylenol seems to help it so I guess thats a good thing. She is stressing out about school because she missed a day and now has a lot of homework to make up. I told her she does not need to worry about her grades right now we have other things more important to deal with. I think she is relieved that she will not have to go to work this weekend. I know she wanted a job and she wanted money but I think she was just totally exhausted every day when she went to work. She continues to amaze us with how grown up she is in her thinking process and what a strong brave fighter she is. I will post more once I have found out more about the study in Michigan. Thank you for your continued thoughts and prayers. They really do mean a lot. Also thanks for the hugs. Sorry I cry anytime Im hugged but I do appreciate them.
Posted on: Sat, 18 Oct 2014 04:12:11 +0000
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