Well its been a while since i've posted any updates, its been a rocky road the last month or so. The transplant has been succesful so far with a 90% donor cell population. I have been batteling graft vs host disease of the gut which kept me hospitalized longer than expected,they have been treating me with high doses of steroids to help. I had a few weeks where my blood counts were extremely low, bone marrow looked good but blood cells not coming out which put me at a high risk for infection. Finally after weeks of not seeing much change and dr.s with not much explanation, and alot of worry,doubt,anxiety, the good Lord took the reins,things turned around in the right path. I was discharged on wednesday but have every other day visits for a few weeks so they can watch me close. Still a long way to go to full recovery but hope to return to Montana mid july. Thank you everyone for all the prayers and support,
Today is six days post transplant. I have been doing very well so far. Side effects have been minimal, mainly fatigue and a little nausea and headache. Today my blood counts started to rise which means the new stem cells could be starting to graph. I'v been able to get out of my room and walk around the facility. Thankyou for all the caring support!
At 8:00 est on april 12th I recieved my new stem cells after three days of light chemo and a full body irradiation therapy. The side effects so far have been minor,a little naucious and fatigue but I'm getting rest in between all the nurses and doctors visiting.
Thankyou for all your support!!!
Well I got admitted today, I have one more procedure tomorrow, an endoscopic ultrasound of my common bile duct. They saw something on MRI and they just want to make sure it's o.k. So here's my schedule for the next week if I'm not able to post for a while.
Sun 4/8/12 first dose fludarabine (chemo)
Mon 4/9/12 fludarabine/ start tacrolimus IV
Tues 4/10/12 fludarabine / start sirolimus
Wed 4/11/12 total body radiation
Thrs 4/12/12 transplant
Thankyou for all your thoughts,prayers and support
I've got a few more days left before the big event happens. The only appointment left is a radiation simulation on the 4th then I will be admitted on the 5th. My Dr. decided not to collect my stem cells because of risk of clotting which I have already had complications with,so I have some time to see the area and all it's history
Well things are going pretty good here in MD. I had a bone marrow biopsy on monday and it went as good as it could go. I've had a few MRI's this week also, they want to make sure their not missing anything. Today I met with the radiation oncology team to discuss the treatment. I will be getting a very low dose so it shouldn't be too bad. Thankyou so much to all who have donated and have kept my family and I in your prayers,we could not do this alone
Ok Jeff is leaving on the 22nd to head to MD for his transplant. He will be there for about 3 months. His parents are going to be with him. We are asking for donations again to help with the shortfall from Jeff being out of work. We are hoping he will be able to get unemployment and I am looking for ways to cut our living expenses. We are asking for $15000 because we are not sure how long Jeff will be out of work. He will keep up on posts and I will try to keep you up to date as to the status of his transplant. We Thank everyone for your past support and future support. We are so blessed to have such incredible people in our lives!
I am sorry I havn't posted anything i a while been trying to get back to "normal life". We have had a little bit of a set back Jeff had a ERCP yesterday and developed pancreatitis from it. he is currently in intensive care here in the Dillon hospital waiting to hear what the next step is. I am unsure if we will be heading to MD again or if his care can be here in Dillon. Please keep him in your thoughts.
Jeff is on his way home! The kids and I are so happy! He has to go back in about a month for follow ups. I think home is where he should be for the real recovery! Back to simple everyday life in Dilon will be great! Wil post again when he gets home. Love to all!
Talked to Jeff this morning he had his bone marrow biopsy and is pushing to be able to come home tomorrow. Plan is to get him home and start the antibiotics and blood thinners so he can get to the best health state possible. And then back to NIH in a month to discuss further planning...transplant or wait? I am sorry I didn't post anything yesterday I tried to stay off the computer and spend time with the kids. As soon as I know more I will post. Lots of Love to all!
I got home today around noon and got to Dillon about 3pm. it was so nice to see the kids. I did have to leave Jeff there. The Dr.'s have more test that they need to do and want to get his infections under control. I thank everyone for all of your suppost. Please if you have a moment call Jeff he would love to hear some voices other than his wife and mother (no offense Betty) . If you need his number just send my a message via facebook. I am going to go try to get the kiddoes to sleep and myself. ove to all Thank you so much!
Ok so we have met with Dr. Holland & Dr. Horowitz and I have had a CT & about 1 liter of blood has been removed from my body! Anyways they have found something in my lungs that is "suspect". More tests to come and plan of action is to find infection and treat it then discuss transplantation...if we can find a donor. Feeling good but miss the kids! Thank you everyone for your support We feel truely blessed to have such great friends and family! I will post as much as possible or until we know more.
Thank you everyone so much! We are busy getting ready to be gone for a week. But all plans set and we are anxious to get there now! John & Betty are going to join us which is wonderful! I will do my best to keep this and facebook updated as much as possible! Love to all of you!
We both have plane tickets and hotel room is booked. Will keep posts so everyone can check status. Might not be on here very much this weekend trying to get things done to get kids & animals ready for us to be gone. Thank youall we feel so blessed!
I was able to lower our goal because we were approved for financial assesment at NIH. They are going to pay for Jeff's ticket! I am just thrilled with how easy this has all been! Makes me feel like it is right!
I am raising money for travel expenses to National Institute of Health in Maryland. There is a Dr. in Maryland that is very interested in treating me. I have MDS and have been fighting a sinus infection for almost 1 year. The Dr.'s that have been studying our family have found another gene mutation that is most likely the reason I have been stuggling with infections. As most of you know I have been hospitalized twice for infections. The last one just about got me. The Dr.'s at the NIH have told us that they will treat me for free. The only thing they ask is if I pay for the first Travel & Lodging expenses. Every visit there after will be covered by them. This is truely a blessing!
When we go for our appointment in Maryland we are going to be discussing and most likely planning for a bone marrow transplant.
Any help will be greatly appreciated! I will make sure that Amber keeps facebook updated. Thank you for all for your prayers and support!
The money collected will go towards Plane tickets for myself and Amber, Lodging, meals, & Rental car.
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