By way of quick update, we're heading out to Utah next week. I meet with the transplant team on the 3rd. We're not sure yet when I will be hospitalized to start the process as there are a few preliminary things that need to happen (finding a match, insurance clearance, labs, etc.). My awesome brothers and sisters all got their lab work done this week to see who might be the lucky winner: A bone marrow match. I do not take for granted the fact that any one of them is willing to do this for me. If none of them are a match, we have to go to the national/international registry...but hopefully we don't have to go there (it would just prolong the process). As always, we'll update again soon.
Oh, and if you're curious what this whole bone marrow transplant thing entails, here's a link to a summary from the Huntsman Cancer Institute in Salt Lake City, Utah, where I will be treated.
Thursday, June 27, 2013
Tuesday, June 25, 2013
Sunday, June 23, 2013
Fundraiser
This is Janna and Cory's sister-in-law and I am asking for help from all of you out there in blogger land.
With the impending bone marrow transplant Cory and Janna are looking at some major expenses. Janna and Clara will be flying out to Utah while Cory brings the boys out in their car. Also Cory will be flying back to DC for work during this time. This will be a huge expense.
I am not sure of their insurance but I am sure there will be a lot of co-pays and other expenses that will be incurred during her stay in the hospital. There will also be many trips to and from the hospital once she is out to check her blood levels and such.
As the Martins started on this journey I was wanting to help but wasn't sure how. Cancer doesn't just hit your physical health, it impacts all facets of life. After talking with my husband I set up a fundraiser to help the Martins with one area, one I knew would take a big hit, the pocket book. We have set up a fundraiser to help Cory and Janna and ease one burden they are dealing with. Funds can be given anonymously and no amount is too small. If everyone out there would give $5 that would make a big dent in the expenses that they are facing.
Cory and Janna have been blessed with a great support system that have helped them so much on the journey thus far. Thank you to everyone who have helped ease their burden!!!
Fundraiser link.
With the impending bone marrow transplant Cory and Janna are looking at some major expenses. Janna and Clara will be flying out to Utah while Cory brings the boys out in their car. Also Cory will be flying back to DC for work during this time. This will be a huge expense.
I am not sure of their insurance but I am sure there will be a lot of co-pays and other expenses that will be incurred during her stay in the hospital. There will also be many trips to and from the hospital once she is out to check her blood levels and such.
As the Martins started on this journey I was wanting to help but wasn't sure how. Cancer doesn't just hit your physical health, it impacts all facets of life. After talking with my husband I set up a fundraiser to help the Martins with one area, one I knew would take a big hit, the pocket book. We have set up a fundraiser to help Cory and Janna and ease one burden they are dealing with. Funds can be given anonymously and no amount is too small. If everyone out there would give $5 that would make a big dent in the expenses that they are facing.
Cory and Janna have been blessed with a great support system that have helped them so much on the journey thus far. Thank you to everyone who have helped ease their burden!!!
Fundraiser link.
Wednesday, June 12, 2013
Leap of Faith
After a lot of prayer (a lot), fasting, discussion, thought, and not feeling sure going either route (transplant or more chemo), Cory and I felt like we needed to make a decision and move forward with it. We knew once we started moving the Lord could help us know if that was the right direction. Either way was a gamble. I kept thinking, "Is the cancer going to kill me, or the transplant?" We've been told this kind of cancer with the sarcoma tends to relapse easier. There are also a lot of risks involved in a bone marrow transplant. We also have faith that whatever happens whichever way, it would be OK. Don't get me wrong...it doesn't mean we're not scared. Sometimes downright terrified. And it doesn't mean that sometimes our faith hasn't faltered. But, we have to let faith override the fear. Otherwise, what are we left with? The Lord has been with us and will continue to be. We have faith in His plan.
With all that said, we decided to move forward with a bone marrow transplant. We are going to do it at the Huntsman Cancer Institute in Salt Lake City, Utah. I have an appointment to meet with Dr. Paul Shami (at Huntsman) next Wednesday the 19th. I'll fly out to meet with him then return home. Assuming he's also in favor of a transplant being my best bet for a cure, we'll then work to get all of us out there ASAP.
This is a recent email response from Dr. El-Shami:
Hi Janna,
I support your decision to proceed with transplant. I have been on the fence simply because of lack of reliable data to recommend for or against transplant without hesitation. Let's see what the folks at Salt Lake will think. Dr. Kantarjian of MD Anderson also recommended transplant (though yet again a 'wet' recommendation). Let me know if you need any help getting all the records to Utah on time. But it should not be a problem.
Keep me posted.
More as it unfolds.
Saturday, June 1, 2013
We Believe in Miracles: The Journey Part III
Before I left the ICU the next morning, we had what would be a final visit from the neurosurgeon. Again, he told me he was still "waiting in the wings". Nice guy, but he was becoming like the grim reaper. Nothing personal, doc, but I'm glad we didn't have to see you again. Fortunately, I cleared the spinal tap with no meningitis.
After I left the ICU, the next couple of days until I was discharged on Friday were somewhat frustrating. We just had to wait. Infectious disease wanted to wait for some labs to see what kind of bacteria we were dealing with, the ENT team was waiting on infectious disease, and the Opthamologist was just thrilled when he came to see me the day after surgery and saw how much better my eye looked.
Cory affectionately tagged this, "Janna's kool-aid lip". Not the most flattering picture, but also not too bad considering I'd had two surgeries on my face in 3 days...and hadn't showered for, uh, several days. I missed my kids and worried about how they were holding up, although I'm grateful I didn't have to worry whether or not they were being taken care of. Grandma was being mom while Cory spent long days with me and went home to sleep. I worried I would wear out my mom. She had planned to come help for a week with a new baby -- not be completely in charge of my family. Her week-long visit kept getting extended as the story continued to unfold. I am incredibly grateful for her willingness and ability to be here to help us. I horribly missed my newborn daughter and worried she wouldn't know who I was. Cory brought in pictures and videos of her on his phone. I was grateful she'd switched from breast to formula with such ease -- truly a tender mercy -- but wanted to be able to hold and nurse her again. I thought I could work on getting my supply back when I returned home.
Thursday the Infectious Disease doctor told me I'd be going home with a picc line and a 6-week course of IV antibiotics. Something in my orbit lit up on the MRI, and they were erring on the side of caution as they feared a bone infection (of course, we learned later that these things showing up on the MRI -- at the base of the skull and orbit --weren't bacterial but, rather, part of the cancer). The antibiotics were such that I wouldn't be able to nurse while on them. This may not seem like a big deal, but it was to me. I mourned the loss of my breastfeeding relationship with Clara for a long time. For some reason I couldn't contact Cory, so I called my dad and cried as I told him what I'd just heard. I felt scared; scared of what was ahead and whether or not I'd ever feel normal again. My dad reminded me to look where I'd come, not how far there was to go.
Finally, on Friday, February 8 (a week after going to the hospital), I was ready to be discharged. I had my new accessory in my arm (the picc line), my pirate patch on my eye, my own clothes, the "kook-aid catcher" gone from under my nose, and everything in place for a home nurse to come show us how to administer the antibiotics and care for the picc line. Unfortunately, I walked in the door at home with another pounding headache. I held Clara, said hi to my kids, forced down a bite of two of dinner, and went to my bed. I was surprised by how weak my legs felt climbing the stairs to our bedroom. These were the same legs that carried my pregnant self up and down those stairs several times a day with ease just weeks before. I couldn't believe how weak I felt. And, for whatever reason -- anxiety, physical exhaustion, who knows -- I felt miserable. Cory called a friend to administer another priesthood blessing. They blessed me to sleep that night, which I did. The anxiety-ridden hospital nights carried over into nights at home that night and for a while, but I was still grateful to be in my home, in my bed, with my family.
After I left the ICU, the next couple of days until I was discharged on Friday were somewhat frustrating. We just had to wait. Infectious disease wanted to wait for some labs to see what kind of bacteria we were dealing with, the ENT team was waiting on infectious disease, and the Opthamologist was just thrilled when he came to see me the day after surgery and saw how much better my eye looked.
Thursday the Infectious Disease doctor told me I'd be going home with a picc line and a 6-week course of IV antibiotics. Something in my orbit lit up on the MRI, and they were erring on the side of caution as they feared a bone infection (of course, we learned later that these things showing up on the MRI -- at the base of the skull and orbit --weren't bacterial but, rather, part of the cancer). The antibiotics were such that I wouldn't be able to nurse while on them. This may not seem like a big deal, but it was to me. I mourned the loss of my breastfeeding relationship with Clara for a long time. For some reason I couldn't contact Cory, so I called my dad and cried as I told him what I'd just heard. I felt scared; scared of what was ahead and whether or not I'd ever feel normal again. My dad reminded me to look where I'd come, not how far there was to go.
Finally, on Friday, February 8 (a week after going to the hospital), I was ready to be discharged. I had my new accessory in my arm (the picc line), my pirate patch on my eye, my own clothes, the "kook-aid catcher" gone from under my nose, and everything in place for a home nurse to come show us how to administer the antibiotics and care for the picc line. Unfortunately, I walked in the door at home with another pounding headache. I held Clara, said hi to my kids, forced down a bite of two of dinner, and went to my bed. I was surprised by how weak my legs felt climbing the stairs to our bedroom. These were the same legs that carried my pregnant self up and down those stairs several times a day with ease just weeks before. I couldn't believe how weak I felt. And, for whatever reason -- anxiety, physical exhaustion, who knows -- I felt miserable. Cory called a friend to administer another priesthood blessing. They blessed me to sleep that night, which I did. The anxiety-ridden hospital nights carried over into nights at home that night and for a while, but I was still grateful to be in my home, in my bed, with my family.
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