Wednesday, October 19, 2011
Mireya continues to do well. We found out at our appointment this week following a chest x-ray that she has pneumonia, so she has been given antibiotics to address that. A few counts continue to fluctuate for no good reason, but the overall picture is good. Day 100 is considered a major milestone. By this time period, you are considered past the worst of the procedure and on the path to recovery. There is some significant testing she will have done next week that will give us an in depth look at her cell makeup and progress since the transplant. The full recovery process is slow and in some instances could take two years for the immune system to be reconstituted. We we are believing Reya's health will be 100% by her new birth/life day July 6th. Day 100 has allowed us to eliminate several of the medications Mireya takes daily, which is awesome!!! We don't fully know what Day 100 buys us in our day to day life?? I was hoping for a little more freedom, but it seems like everything I've asked about being able to do has been sidelined until further notice, BUT we know and celebrate that it is a major medical milestone and that is what counts the most.
So many things to celebrate and be thankful for. God moves even in the midst of our darkest days and times. He allows us to see and be reminded that he is with us in and through it all. Thank you for your continued love, support, thoughts and prayers!!!
Friday, October 7, 2011
Extreme Makeover Home Edition is ALWAYS a tear jerker. This week's episode hit so close to home. It featured a family where the sweet 7-year old boy Jonah has two life threatening and debilitating blood disorders. http://abc.go.com/shows/extreme-makeover-home-edition/episode-detail/gomez-family/857223
I sat in awe of what this family endures and goes through and thanked God for the miraculous works in our journey. This little boy and his family are amazing and continue to hold out hope that a donor match will be found for him in order to save his life. Thank you Lord for Jalen. Thank you for our son whose own journey into this world was preceded by a number of miscarriages, but 'his' life was preserved so he could give life to his sister. During the segment they were able to find family members his mother did not know about and those she had lost contact with to also test, but he has no immediate family member match.
Jonah is a handsome, vibrant little boy that LOVES soccer. Take Mireya's love for princesses to the 10th power and that is his love and obsession with soccer. Because of his condition he is required to be on oxygen pretty much 24/7 and that prohibits him to live and breath soccer in the outside world. You know Ty hooked him up with his very own indoor basement soccer field that came equipped with a full on and fun oxygen bar. Just too cool for words, but the reality is that without a donor match for him, his life remains in jeopardy. One of the most beautiful things I witnessed on this show outside of the house, because we know Ty and his team are great at what they do, was the coming together of community and organization.
Jonah's is wild about his hometown soccer team. The team started an initiative that went to soccer stadiums across the world to find a match for him. I cried at the sheer number of people that completed the testing to see if they are the match. Unfortunately, they did not find a match for him, but they were able to find matches for five other people waiting for bone marrow transplants. Amazing!
I'm so proud of Paris who has been volunteering at 'Be the Match' events on her campus spreading the word, sharing her sisters story and encouraging fellow students to get tested. When I was about 15 years old there was a little boy at my church suffering from a life threatening illness that needed a bone marrow transplant. Our church coordinated a drive to find a donor for Little Ron. There were people lined up all around the building for testing. It was incredible. I remember thinking oh my goodness I can't do that. I hated needles and all I could see was them injecting a huge needle into my body to test my bone marrow. It was truly a scary prospect, but to find out that a simple swab of your cheek could position you to save someone's life is truly something we all can do. It is my hope and desire to coordinate a drive with or through 'Be the Match' in the future. Finding a match in my own household saved my daughter's life and I want to help those in the same situation have more donors available. In the meantime, I encourage you to visit http://marrow.org/Home.aspx and join the registry or see how you can become involved with this organization and potentially save Jonah's life or the life of someone else in need of a bone marrow transplant.
Sunday, October 2, 2011
Mireya is doing great as are the rest of the crew. I have no plans to dwell in this space long, but for now I'm decompressing and resting in my funk. We'll reconnect soon.
Saturday, October 1, 2011
I don't consider myself a caregiver, but dealing with illness when a child cannot care for themselves is not a light task. Some people are made for this because it is their hearts desire to serve and care for others in this capacity. Others suddenly find themselves in this place and then it becomes your hearts desire to do all you must to ensure your loved one is taken care of. This can be a very overwhelming space. Medication schedules, temperature checks, flushing lines, breathing treatments, dressing changes and so much more. You don't want to miss anything or do anything wrong. You feel like the RN without the 'R'. One 'R' in this case is Responsibility. Responsible for administering and managing Reya's care while she is with us. The greatest setback for Mireya would be to get sick and have any sort of infection that would cause her body to reject the progress of her bone marrow transplant. Isolation, hand washing, sanitizing, and doing any and everything to minimize exposure to bacteria. That in itself could take you to the land of OCD (Obsessive-Compulsive Disorder). Imagine layering that on top of what is already going on. Yes the Twilight Zone could seem very near.
The other side of all of this is the emotional side. It is a very draining process. I had a time recently where I just wanted to sift through all that has occurred and allow myself to just feel and express whatever I wanted. Suddenly your life is turned upside down and you now have a new set of priorities to adhere to. Life doesn't stop, nor does the demands of the other five people that need your love and attention. Yes I include myself in that number, because it's so easy to forget yourself in this process. The greater of our emotions over time has been thankfulness. Thankfulness for medical resources, miracles and a community of people, organizations and friends that have surrounded us with love and support beyond words. All these things have made our journey lighter. Love conquers all, and being immersed in the love God has for us through the actions and blessing from others makes it easy to keep pushing.
This has been a time of many emotions. When you are faced with caring for a loved one that is unable to care for themselves, especially one that is only four years old, it can be difficult. Isolation has been hard, but ensuring that Mireya's immune system is not further compromised, so in several months we can live, move and have our being freely is a small sacrifice in the grand scheme. We are working to protect one of our greatest gifts and it is absolutely worth it. It has been key for us to try to maintain a quality in life for Mireya that allows her a measure of control through something that is totally dictating how we live right now. Also allowing her sense of self to remain intact. Reminding her of just how special and beautiful she is. Placing little to no significance on hair. Hair is something you can 'choose' to cut when you want and guess what it grows back, and also reinforcing the fact that all the things she cannot do right now she will be able to enjoy again soon.
The 'R' for us has also been Revelation. I am amazed that something so rare could find its way to us, but God knew he had a 'ram in the bush' in Jalen and that as we submitted ourselves to him as our source for everything we needed, along with a world of people praying for us...that in the end it would be 'better' than alright. We know this is not the story for everyone, so we continue to pray for those in this same place or those living and existing in their own "Lord I'm depending on you" space. Remain hopeful and keep the faith, only God knows the end, so keep trusting him to see you through.
I'm so fortunate to have my husband and best friend beside me. The Lord has shown us that together we are a force to reckon with. You never imagine yourself here, dealing with a life threatening illness and all it entails, but in the midst of this we've learned how strong we are, how strong our faith in God is and how much he loves us. Marvin Sapp's "Never Would Have Made It" is like an anthem because it's only by the grace of God that we're at this place. You hate to say 'why me', but the even stronger expression of 'why not me' hasn't been my mantra either. I've simply talked to the Lord and told him that for whatever reason it is us and please just help us through this because we believe on the other side of this is a miracle and a blessing. In the Old Testament, they didn't just give their child a name because it was popular or sounded cute. Names had such significance back then. Never did we imagine when we gave our daughter her name Mireya (admired/miracle in Spanish) that she would be our 'living' Miracle. The simple fact that you wake up every day is a blessing. Life is too precious and it is not promised. We continue to speak life and thank God for her life.
John 10:10 The thief's purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.
“Words can never adequately convey the incredible impact of our attitudes toward life. The longer I live the more convinced I become that life is 10 percent what happens to us and 90 percent how we respond to it.” ~ Chuck Swindoll