Greetings from North Carolina!
What a difference a year makes! This time last year we were adjusting to life as a family of four. We were living in Washington and we were preparing for Mike to deploy to Afghanistan. We had just received the devastating news that Olivia has Sanfilippo Syndrome (a genetically inherited metabolic disorder). Now we’re just getting settled near Ft. Bragg, North Carolina. Mike did not deploy to Afghanistan. Olivia had an umbilical cord blood stem cell transplant almost 6 months ago and Peter has taken his first steps!
I’ll start with Olivia since so many of our experiences in 2009 involve our precious little girl. When Olivia was diagnosed with Sanfilippo syndrome we were told that there were not any treatment options. In January I learned about a clinical trial at Duke University where doctors were using umbilical cord blood stem cell transplants to freeze and potentially reverse some of the damage that is caused by Sanfilippo syndrome. In March we traveled to North Carolina to learn more about the transplant process and see if Olivia would be an ideal candidate for the procedure. Our decision to move forward with the transplant was by far the most difficult decision that Mike and I have ever been faced with. After weeks of prayerful contemplation we made our decision and moved forward with the transplant process. We endured a lengthy battle with our insurance company. We moved to Durham in June and Olivia was admitted to the hospital and began chemotherapy to prepare her body for the transplant. Olivia received her transplant in July and was released from the hospital in September. We had to remain in Durham near the hospital for a couple more months and Olivia was finally cleared to go “home” to Ft. Bragg at the beginning of December. So far Olivia is responding to the transplant very well. Some of the effects of the Sanfilippo syndrome are beginning to be reversed and Olivia has started to produce the enzyme that she was lacking. We know we still have a long road ahead of us but we’re hopeful!
Peter has been happy and easygoing from the start! He is such a blessing and he completes our family in a way that we never expected. Peter initially made the trip to North Carolina with us but when Olivia was admitted to the hospital he went to Texas to live with my parents. I know that Peter enjoyed his time with them as much as they enjoyed having him. In October Peter came back to Durham, our reunion is one of the happiest moments of the year! Peter took his first steps one day while we were at Duke for one of Olivia’s appointments. He’s just starting to talk, his first word was “dada” but he’s also added “hi” and “yeah” to his vocabulary.
Mike was able to be reassigned from Ft. Lewis, WA to Ft. Bragg, NC so that he could be close to Olivia and I at Duke. Mike thinks often of our friends and family members in Afghanistan but we feel so blessed that he was able to be here throughout the transplant process. He was able to take some time off to help us move from Washington and get settled in Durham and then went back to work in July. Mike is in an airborne unit here at Ft. Bragg and he’s enjoying every second of it! He’s been busy practicing his paratrooper skills but fortunately he was able to join us almost every weekend we were in Durham. Mike spent his “bachelor” months at Ft. Bragg busy house hunting. He found a fantastic house for us in a great neighborhood and we’re going to love living here. Mike will take command in January and I think he’s looking forward to the challenge.
This has been such an amazing year, full of so many highs and lows. I took a step back from my volunteer work and I loving the extra time I’ve been able to spend with our family. I’m so much more comfortable and confident in my role as a mom. I am treasuring the small stuff and I’m so blessed to have such supportive friends and family! We’ve been fortunate to be able to spend more time with some of our family members and we appreciate all the help. I am really enjoying the creative outlet that our family blog provides so if you haven’t checked it out lately please do! www.mikelaurieandolivialeiva.blogspot.com
We wish all of you a blessed Christmas and a Happy New Year. Thank you so much for your thoughts and prayers, for all the thoughtful gifts and presents that you sent. We treasure them all more than we will ever be able to express!
Love,
The Leivas
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