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Apr 28-May 04

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I can't believe that I haven't done an update in almost a year!  I have received so many kind emails and texts asking how things are going so I thought it was time to share! 
This last year has been filled with ups and downs.  The spring of 2019 was filled with illness after illness.  I struggled with my lack of immune system and was constantly sick and worn down.  
Summer was a whole different story.  I felt great all summer and we were able to do some traveling and just enjoy life!  I was worried about going back to work in the fall, afraid that being around all the kids at school would have me down again. But so far I have only had one cold since going back in August!!
Since the last update I have had bone marrow biopsies and MRI/PET scans every three months.  Blood work and bone building IV's every month. 
Due to all the illnesses in the spring, we (the doctors and Mike and I) decided it was time to go off maintenance chemo.  It wore me down so much and I just couldn't rebound.  We decided that quality of life was more important than the quantity of years.  What is the point of living longer if you are too sick to enjoy it? 
I had my last appointment the end of October.  The PET scan and blood work showed that I am the closest to normal than I have been since this whole nightmare began!  When the Iowa City doctor told us that things could not look any better, he was quick to add that we have to remember it will come back, but he thinks I have several years before that will happen.  My immune system has finally rebounded and my numbers look good enough to start getting my childhood immunizations again (the stem cell transplant wiped out all of my previous shots).  He said there is no need to go back on chemo since it always makes me so sick and everything is doing so well.  And the best news is that I don't need a bone marrow biopsy or another MRI and PET scan for 6 months!!! That is huge... I actually broke into tears at that news.
To me it means that after 2 years of this mess, I finally feel "normal".  I will continue to see my Des Moines doctor every three months for blood work and bone builder infusions and I will stay on the pain meds to deal with the bone pain, but other than that I am normal.  Mike and I just stared at each other in disbelief.  We are always prepared for bad news, but this time we were given hope.  Hope that we can enjoy the next few years and maybe sit back and relax a bit. 
I am looking toward the future, Lana is getting married in June and I am thrilled to be focused on wedding planning instead of doctor appointments. 
As always, thank you for your thoughts, prayers, texts, emails and messages.  The love and kindness that I have been shown made this journey so much easier.  

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