Mireya's Progress

Mireya has been doing fabulously.  Counts continue to improve and her overall health is increasing.  Post 100 days we have been able to eliminate wearing the mask unless in a very heavily populated space.  Reya  was so delighted by this.  She just giggled with excitement at the prospect that she could go outside and play without a mask on.  We were walking to the bus stop to pick up Jalen and she said 'Wow' I can 'feel' the air on my nose and mouth.  My heart wept in that moment.  The simple pleasures of life that we take for granted.  Reya's hair is growing back and it is beautiful.  We are in clinic every two weeks which is a blessing and she still receives her monthly treatment to help prevent pneumonia, which she has had about once each month, so I'm not sure how well that is working, but I'm happy we've been able to identify and treat each case of pneumonia without further issue or concern.

We still have the Hickman Catheter in for blood work and to administer one of her meds via the line.  It will be so awesome when we can get that out.  She'll be super excited to do two things she misses very much...take a bath and go swimming and best of all not have to deal with weekly dressing changes.  We still have several months of treatment to go through, but overall we are tracking beautifully.  Thank you for continuing to keep us in your thoughts, prayers and for checking on Mireya's progress.

Polar Express

Do your kids have a bucket list? I know a 'bucket' full of sand in the summer time is probably as much a thrill for your kids as mine.  Jalen and Mireya have both wanted to ride a train for quite some time.  Timing and life as we know it for the past year have sidelined attempts to plan something, but we had the awesome opportunity this weekend to ride the Polar Express.  

I held off telling the children about our plans until the day before which was Jalen's birthday.  Jalen was so excited and was also of the impression we planned this especially for his birthday.  It was sort of a trade off in his mind for the 'Swagger Party' he really wanted to have (that is entirely another blog post).  Mireya just giggled with excitement and Makinley heard train and knew it had to be something good.  Choo Choo!

We arrived at the Train Station and the kids were greeted by a cheery group of elves.  Each child received jingle bells and a conductor hat in preparation for their journey.  The level of excitement and anticipation increased as the children waited for the train to pull into the station. There were smiles from ear to ear as we boarded the train.  Just as quickly as we stepped on the train, we were off to our destination.  All the children's little faces were pressed against the window as the train raced down the track.  A car ride to Ashland would take about 30 minutes from the station, but we got there in a record twelve minutes.  If you took the kids to the bathroom, you missed it, fortunately I 'made' everyone go just before we left.

When we arrived we were greeted by more elves and Mr. and Mrs. Bear.  Jalen has always been a bit leery of large over-sized characters, however, Mireya and Makinley immediately ran to them for a hug.  As we walked across to the lovely Henry Clay Inn, Santa and Mrs. Claus awaited us.  The kids went wild, that is, except for Makinley who wanted no parts of Jolly St. Nick.  Inside there were crafts, games, food, and lots of fun.  Mrs. Claus read the children a story which the really enjoyed and by the end of our Polar Express experience Makinley and Santa got friendly.  Each child was presented a handmade Polar Express Christmas Ornament with their names inscribed.

We extended hugs and waved goodbye to everyone as we boarded a chartered bus to return to the train station. Thank you so much to our coordinator Kaila and the Leadership Team at James River High School for planning and hosting such a wonderful event.  It was truly a special time for us as a family.

First Step Preschool

The girls are super excited about attending the First Step Preschool Program.  We had the chance to go to the First Step Preschool party to see everyone and it was awesome.  When we arrived the girls did some fun crafts and 'hand'y artwork.  Mireya and Makinley loved shaking the bells and banging the sticks during circle song time....twas a lovely noise fest.

Lunch was served and games were played. Anytime you have a blindfolded kid that spins around several times, then tries to make his/her mark, expect laughter and there was plenty of that.  Pin the tail on Rudolph was definitely a crowd pleaser.  The children had so much fun and were full of surprise and expectation as the elves led each one to the 'present room' where they received a gift selected just for them.  Most of the boxes were as big as the children and they loved ripping into their packages to see what special gift Santa left for them this early.  There were smiles shining all across the room.

The best part for me was seeing the joy in their eyes.  This was an opportunity to be out, with other kids (outside of the clinic), having a good time.  A very special 'thank you' to the Middlesex FBLA and all the cheery volunteers that made this such a special occasion for every child there.  I loved reconnecting with several Moms I've not seen in a few months and also meeting some new ones.  We are all in this boat together and it is such a awesome blessing to be able to talk to and share with other Moms that can relate specifically to where you are.  I also learned that one of the families will be taking their 'Make A Wish' trip to Disney in a few weeks. We we're recently notified that Mireya's wish has been granted and signed off on by her medical team, so it will be great to hear all about their trip before we go. 

We are so thankful to ASK for the First Step program.  First STEP (Socialization Through Enriched Play) is offered through ASK to provide supportive services for young children whose preschool or kindergarten experience has been postponed or interrupted during medical treatment.  First STEP offers an individualized early childhood educational program for ASK Pediatric Hematology/Oncology Clinic patients and families and is designed to meet the unique educational, social and emotional needs of young children with chronic illnesses as they go through the process of healing. The program consists of several kids currently in treatment and several in the maintenance phase of treatment.  The girls had an awesome first day and it is something we will all be looking forward to each week.

Celebrating Good Times

Celebrate good times c'mon....let's celebrate (a little Kool & the Gang).  The hubs got a new job and a celebration is in order. I'm extremely proud and super excited about this next level for him professionally. We're celebrating purposeful changes I'm making with success.  You can do anything you believe in and set your mind to.  We're also celebrating because Mireya's hair is really starting to grow.  Her little head is 'almost' fully covered with a thin layer of fine hair and every time she reaches up there and 'feels' it, it makes her smile.  Most importantly this past week we celebrated reaching the 100 Day Mark post transplant.

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!!!

Be the Match

  

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.

Resting in My Funk

Where have you been?  That is a great question...I've been thinking about writing but no real motivation to do so.  Things to do, places to go, but no desire to get any of it done and you know what? That is ok.  Isolation has been challenging, but all is well.  For now I'm resting in my funk.  I know 'funk' isn't a good word, it implies doldrums and unhappiness, but over these last several months we've expended so much mental and physical energy that sitting still and doing absolutely nothing is ok. It would be nice if it were on a beach somewhere (I know thoughts of the beach always make me digress), but trust me that day will be here before we know it.

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.

Caregiving

I had the best model of selfless love as I watched my Mother care for my Dad for many years.  Never did she complain or say 'why me' Lord, but she diligently did everything in her power and might to ensure my Father was cared for.  I understand even more now the sacrifice, the love and the work it takes to hold all of that together. She walked out a true example of bearing your cross and gracefully handling that which the Lord has trusted in your care.  I love and appreciate her for that beyond words. Her true reward(s) await her.

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