Back to School

Jalen started school this week.  School was closed several days due to the hurricane.  Classroom notifications literally came out the day before orientation last week.  It was fun to message, text and check Facebook to see whose child was assigned to what teacher.  Jalen only ended up with two former classmates, both he liked a lot and had the chance to spend time with over the summer.  I couldn't believe not one little girl from last year is in his class.  He was sad that his favorite two girls would not be with him this year.  I'll miss their sweet faces and beautiful personalities too this year, but we now have 21 new friends to make this year.  I've heard nothing but great things about Jalen's teacher and we enjoyed meeting her last week.

We had the opportunity to communicate about Mireya's health and our concerns with illness and hand washing in class and just hoping she would help us out as best she could.  Both she and the principal were fabulous.  They had a brief sit down with the school nurse and formulated a letter to the parent's in Jalen's class about the importance of hand washing and kids staying home if/when they are sick, especially the risks due to Mireya's suppressed immune system.  Jalen was not named in the letter, but parents were informed of a 'classmates' situation and the importance of maintaining as healthy a environment as possible so the sibling's health and progress would not be compromised.  Kudos to the Teacher, Principal and Nurse for understanding how important this is for us and taking that extra step to ensure parent's were also aware.  Knowledge and awareness is half the battle.

This is always that week of getting back into the groove and resistance.  The girls want to get on the bus and Jalen wants to stay home because he thinks the girls are at home having more fun than he is.   Overall we've had a great week and we're looking forward to an awesome school year. 

On Track

On the grow and still blonde in some areas

Mireya's appointment this week was quick, fast and without major issue.  She's gaining weight, full of energy and and her counts are good.  Even that lagging magnesium is coming up.  For some odd reason her tacrilimus level did not register even though she takes it twice a day.  Tacrolimus is used to prevent transplant rejection because it suppresses the activity of the cells in your immune system that would normally attack the transplanted tissue.  We'll check that again in about 10 days.  We also got through a dressing change without issue.  I've gotten very good at changing her dressing each week.  I swore I'd ride out the nurses changing it for as long as I could and honestly they still ask and I politely tell them I'll do it at home.  It is still hard for me to look at this contraption literally shoved into the jugular vein in her neck, but it's made our lives so much easier and I have the greatest appreciation for that.  Mireya still gives up a little noise when I have to clean the area, but it's nothing like when they do it in the clinic and she tells me how proud she is off me when I'm done.

Reya's hair is starting to grow.  Each day there is a little bit more than the day before.  Of course we make a big deal about it and she continues to ask me if it's growing like Rapunzel.  I tell her it will be back before she knows it.  The Princess Aurora band aid cures all things, even a rambuntious little girl, full of energy that bangs her head on the edge of a door.  Thank God her platelets are almost 300k.

Say an extra prayer for Emily and her family this evening.  Emily was admitted to the Bone Marrow Unit for her second stem cell transplant.  Emily was diagnosed with neuroblastoma a few days before Christmas and she has been fighting every since then.  Nothing is to difficult for God!  He is able to do the miraculous and that is what we are believing for.

It's Childhood Cancer Month and there are many activities going on this month to bring awareness and support to cancer and kids. Hopefully you were able to enjoy and support one of the many 'Cookies for Cancer' locations today.  Connor's Heroes will be sponsoring Diggity Fest on Sunday, September 18th at Westchester Commons.  Tickets are still available for this awesome family event.  Richmond's own Diggity Dudes will be in concert along with Hope Harris and Dan Zane.  For more info click here http://diggityfest.com/. 

We continue to rejoice in the progress Reya is making and we remain prayerful for our friends and all the kids we see in clinic each week. Praying for others is vital to our own spiritual growth.

1 Thessalonians 5:11 Therefore encourage one another and build each other up, just as in fact you are doing.

Count Your Blessings

I had the awesome opportunity to speak with a lady I'll call Ms. Caroline.  Ms. Caroline saw the 'Acts of Kindness' piece on Channel 12.  She contacted my church with the desire to get in touch with us.  Over 40 years ago she was diagnosed at age 7, with Aplastic Anemia.  She 'happened' to catch the 'AOK' segment and was instantly reminded of the time in her life where everything changed for her and her family.  She and her family were on vacation when she began to have unexplainable bruising all over her body and she was experiencing external bleeding.  Her family cut their vacation short to get her to the hospital to figure out what was going on.  Her family was told she had Leukemia and they should take her home and make her comfortable because she would likely die within two weeks.  Aplastic Anemia is not a cancer, but it behaves very much like one.  At the time Ms. Caroline and her family lived in New York, but were referred to a hospital in Boston that had experience with Aplastic Anemia.  This hospital disputed her original diagnosis of Leukemia and they proved to be a lifeline for her.  She and her family had to travel to Boston every week.  At that time a new drug, Cortisone (a steroid) was introduced on the market that literally saved her life. 

Week in and week out they traveled to Boston.  There were times her platelets were extremely low and she required blood tranfusions.  At one point her platelets were continuously dropping and there was mention of possibly needing a bone marrow transplant.  Her platelets began to slowly increase and her family never had to consider or endure a bone marrow transplant. Ms. Caroline remembers the isolation, not being allowed to attend school and being tutored at home.  Miraculously within one year of the initial diagnosis she was declared cured.  Initially they were told she would need at least a five year clearance before she would be considered free and clear of Aplastic Anemia.  She returned the following year for a checkup and was released from care and she never had another issue or incident.

It was very refreshing to speak with Ms. Caroline. It was her desire to reach out to be a encouragement and support to us during this time.  She was much to young to to understand the hard facts and logistics of her illness, but she understands as a child how difficult a diagnosis like this is.  She recognizes as parents the toll it takes and how hard it is to watch your child endure this illness.  When she saw the piece on Channel 12 she called her Mom and her mother was able to recount a lot of the details for her.  I began to share the highlights of our journey thus far and it helped her to connect the dots in some of the unexplained areas of her diagnosis. There is so much information that wasn't known or available about Aplastic Anemia back then. 

In most instances, unless its inherited, Aplastic Anemia is considered a idiopathic disease.  Basically the origin of it is unknown. It is believed when you have a series of illnesses/viruses the body is fighting, coupled with medications the body can get confused and begin to fight off all cells even the necessary ones.  Ms. Caroline recounted prior to being diagnosed that she'd had a terrible case of the Mumps.  At that time there were no vaccinations for it, but it made her wonder during the two weeks her body was battling the Mumps if something similar to this had occurred.  My very intelligent and resourceful husband recalls reading about some strain of a virus or bacteria associated with the Mumps that and other infections that is believed to cause Aplastic Anemia.

Ms. Caroline told me how during her isolation she began to take piano lessons.  Something she could do that didn't require much physically or by way of interaction with others.  She said she enjoyed playing and went on to play with worship groups in her church and she still has the small upright piano her parents bought for her back then. Isolation requires creative ways to keep your child connected and having an activity or something they can look forward to other than visits to the clinic each week is helpful.  Mireya loved taking dance, but unfortunately she will not be able to be in such a closed environment with other little ballerinas.  Piano is one of those things I'd love for all of the children to do, but I know at least one of them will play.  I'll have to look into that.   

I am so happy Ms. Caroline reached out to us.  Her story is incredible.  It's awesome to hear some of her accounts as a 7 year old dealing with a life threatening illness. I don't believe anything 'just' happens.  The fact that Cortisone came out the year she was diagnosed with Aplastic Anemia is not by happenstance. Our paths have crossed for a reason.  The Lord has allowed me to see that this could have been a very difference scenario for us. An early diagnosis, a donor, technology and medical support in the city we live in, programs, a plan, and a successful outcome are all reasons to continue to have a hope and a praise in our mouth.  God is so faithful.  The odds with such a illness are great.  The statistics of getting to this point also have odds, but God is greater than all of them.  Mireya is our 'miracle'.  Mireya means 'miracle' and we had no idea when we choose her name all that was to come.  To us it was a 'miracle' after so many losses to have her.  Miracle has taken on yet another meaning for us.  We believe wholeheartedly Ms. Caroline has been connected with us to share her story and to be a blessing and encouragement to us.  She has lived beyond the few weeks of life they gave her.  She overcame the odds.  It is a blessing to us to 'see' Gods hand at work and we know that he will do the very same for Mireya and that she will have the opportunity at some point in her life to share her story.

We are thankful for God's continued hand of protection upon Mireya's life and physical condition.  She gets stronger every day.  Her counts are increasing each week.  I look back to just 60 days ago and all I can say is 'Thank You Jesus'.  Don't let a day go by without having an attitude of gratitude, without being grateful and thankful for where you are.  Personally you may not be where you desire to be, BUT it could be worse or you could be faced with a situation where you literally have no control.  God is a healer.  God is a deliverer and through every challenge, obstacle or issue that comes to rob you of your peace, health, sanity and well being, He is with you.  Continue to believe and trust him.  Mireya is a witness.  Mireya's life is a testiment of his goodness and we know without doubt he will continue to see us through.

Hebrews 12:2 We must focus on Jesus, the source and goal of our faith. He saw the joy ahead of him, so he endured death on the cross and ignored the disgrace it brought him. Then he received the highest position in heaven, the one next to the throne of God. (Gods Word Translation)

Visiting the Isolated & Shut In

We've had a few really fun visits over the last week.  Our friends the Woods are in town and it goes without saying that we will find our way together before they hit the road.  Rebound and recovery did not stop the visit this go around.  Technically we did see one another, but so much is going on in both our lives, we just needed to connect and catch up.  

Derek has been one of Mireya's favorite people every since she was a baby.  Reya would allow very few people to hold her, but Derek was one that she would always open her arms to.  They had a very special bond, but haven't seen each other in such a long time.  Well time and distance didn't diminish that connection. Within no time they were connected at the hip, which little Ms. Nadia was not amused by in the least. There is always lots of smiles, laughter and comedy when we get together.  We miss having them here.   The parameters of the Military Life have seemingly changed, or perhaps it's just that I was not all up in the flow since I was just the military brat (i say that affectionately).  We are praying and believing for God's best as they prepare for the next phase of life in the military.  They joined us for the dance par-tay and the girls have inducted a new princess to the crew...little Ms. Nadia.  We had such a great time hanging out with them. 

We also got to hang out with our friends the Yangsters.  Our kids love, love, love getting together. The summer has gone by and we've only seen each other a handful of times. We grabbed their favorite chinese noodles (lo mein) and hung out for the afternoon until sweet baby girl Quinn was ready to nap.  Jalen and Tien were fully engaged.  They both love all things Star Wars and Legos so they had plenty to keep them occupied.   I don't know who was happier me or the kids.  Care and I sat and chatted.  We laughed, we cried and I got two baskets of laundry folded.  Now that's productivity!  It was so great to see Reya and Mays play.  She loved every minute of it and I loved that she actually had 'play time' with one of her friends. We've been so guarded with visits (rightfully so), it was so good to make arrangements for this time, mask, sanitizer and all. 

On the Radio

oh, oh, oh, oh (sing it Donna Summer). We had a great time at the Children's Hospital of Richmond for their 2nd Annual Radiothon with Big Oldies 107.3 and 98.9 Liberty. Mireya threw on her Maxi dress, glittery flip flops and asked for her matching pink princess tiara cowboy hat. It was truly a vision of 'all girl' fun. Quentin and I had not really discussed what we wanted to talk about up until that point, so as we drove over to the hospital, we threw around a few things we definitely wanted to share if given the opportunity. We arrived and enjoyed some some goodies provided by Moe's Southwest Grill Thanks Moes! We had the chance to meet and speak with the Hospital organizers and then very briefly to the DJ for a quick Q&A before we were 'live' on the air.

The time went by so quickly, I honestly don't remember much of what we said, but #TeamBolton tag teamed it and the goal of 5 calls for our time slot was surpassed. Everyone told us we did a great job on air. We were happy to have the chance to share Mireya's story, but also to highlight how wonderful Children's Hospital has been to and for us throughout this entire journey of Mireya's illness. Thank you to those that tuned in and a special 'thank you' if you were able to make a donation for this awesome event. Over $132,000 was raised, all of which goes directly to the hospital to continue being a blessing to us and so many like us that also have a story and a journey.

Smooth Sailing

Operation "Eliminate Pnuemonia" is in effect. Reya had a great appointment with the respiratory therapist. He loved that she 'dressed' up for the occasion. A fluffy princess tulle skirt and equally flashy rhinestone filled twinkle toes.

I was a bit concerned about the treatment based on all the precautions, but Mireya did great. The therapist was in awe of how well Reya did. She is our Warrior Princess! The process took about an hour and a half but mostly due to coordinating the dosing with her physicians. She had no issues with how the medication was administered or any immediate effects from receiving it. Mireya has been on an antibiotic for this terrible cough for a few days now and it is beginning to clear up. Thank you Lord! We will be scheduled for this respiratory treatment every 28 days until further notice. I'm believing it will continue to be smooth sailing with no issues.

Sunday of Summer

A friend of mine recently posted on Facebook that August is the 'Sunday of Summer'.  A perfectly coined phrase, that is so true. This has been all but a normal summer for us.  Summer time is truly our fun time.  We were sidelined and missed doing so many things, BUT I'm so thankful this summer for a diagnosis, the power of prayer, a donor match, for capable and caring hands to oversee this medical process, the ability for either of us to be at our daughter's bedside every day, meals to feed my family whether we were at home or at the hospital, cards, care packages, phone calls, text messages and emails of support, seeds sown, playdates for Jalen and care for Makinley that allowed us to attend to the business at hand.  I'm grateful for Mireya's phenomenal progress and the things we 'have' been able to enjoy as a family despite the circumstances.

I don't know where I'd be without friendship, family, or my husband.  You will never know the magnitude of how much you've blessed us.  There are no words.  Most importantly we'd be nothing without Christ at the center of all of this.  His love for us is so tremendous!!!  As the 'Sunday of Summer' ends we look forward to reaching our '100 Day' mark and ultimately one year from today looking at a totally cured and healed little girl who will have the ability to do 'EVERYTHING' she couldn't do this year and even more!  Funny how life can change in an instance.  The most beautiful part has been enduring these changes surrounded by unity and love. 

Hebrews 10:23-24 Let's keep a firm grip on the promises that keep us going. He always keeps his word.  Let's see how inventive we can be in encouraging love and helping out.