I am writing from the clinic...watching Mike lay almost upside-down after his spinal tap...which went ok. Today we got the great news about Mike's bone marrow - that the Philadelphia Chromosone is not present in his blood which means that he is not likely to need a bone marrow transplant any time soon. We praise God for that! Also, his platelet count went up to 33 today so he did not need a transfusion as previously thought. All good news... :)
Then I got the report about his treatment change...instead of 5 days each month, its 5 days EVERY WEEK next month. I couldnt help but cry. I hate to be weak in front of Mike, I try to be strong and cry after I leave the room, but I was just so overwhelmed with that news. Just trying to figure out how to transition back to FL, get back to work, get the kids to and from school everyday and have him get to USF everyday (M-F) just makes me feel like I can't breathe. Also, found out that SSI (supplemental income) was denied because they thought Mike was getting unemployment benefits, but unemployment has not been paying him because he is unable to work. They said that the unemployment office has to fax over a letter of termination for SSI to be approved - yet I cant even get through to unemployment because when I call it says "I'm sorry, we do not have an operator available to take your call. Please try your call again later" and hangs up. How do I get them to fax something if they never answer the phone and dont return emails??? Then found out that Social Security Disability is still pending because they lost all of our information and we have to fill out forms by hand and mail them back. Unbelievable. I am trying to stay positive and not got so bogged down by all of these little things, but seriously?? How does this system expect families to get by?? I am sorry to vent all of this, but everyone keeps asking how things are going and I feel its best to be honest and not try to sugar coat everything all the time.
Today was a good day - we got some VERY great news and I just really want to focus on that. I have a wonderful husband who is getting stronger every day and will be around to walk our daughter down the aisle someday...he will be home in the evenings to tuck the kids in bed and read stories and play games, he will be at our dinner table and around for our birthdays and anniversary...for that, I am TRULY grateful.
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ReplyDeleteDear friends of Mike and Kristy, in light of thier recent circumstances I thought it appropriate to set up the Michael Johnson Leukemia Fund that would help to relieve some of the financial burdens they are facing through this difficult time. Mike will be unable to work several months and Kristy has not worked for several weeks as she has been by his side through his treatments. They have a long road ahead of them and especially need help as they transition back to thier home in FL. Please consider what you may be able to give to help them by clicking (or copy and paste) the link below.
ReplyDeletehttps://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=6873197
*A paypal account is not required to make a donation. I thought it most convenient to offer online giving, but please be aware that Mike and Kristy will have to pay 2.9% in paypal fees to withdraw all donations. If you prefer to send a check directly to them, you may send it to 7129 Captive Circle New Port Richey, FL 34655.
2Cor9:6-8