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)

The Irony of it All

One of the most amusing parts of this entire ordeal is not only is your child diagnosed with a life threatening illness but there is a hefty price tag attached. We are so fortunate to be in very capable and qualified hands. The medical team of VCU Children Hospital's Pediatric Hematology/Oncology Department are incredible and worth every penny, but hear my heart when I say dealing with the ins and outs of the diagnosis, associated treatment, and ongoing ups and downs of recovery is enough, but to also be tasked with financially handling the mounting medical bills is enough to buy a lottery ticket and 'pray' to win (i know the irony of that). I mean the odds of Aplastic Anemia are worse than the odds of winning the lottery. Go figure.

Someone recently asked us about the amount of medical bills have. We've paid a few and based on what we've received to date we have a few thousand dollars of out of pocket bills to pay. Well after my walk to the mailbox today that number has tripled....Yikes! The medical services are exceptional, but the billing system is obviously lagging. I received some bills today from some of our initial visits in May. One in particular made me want to take a few hits off my inhaler. For three days of meds, labs and scans it was 30k. We have good insurance and will only have to pay a portion of it, but if I calculate that portion times the 60 days were in the hospital divided by three, it distresses me. We also have our 'Super Hero' brother's medical procedure to throw in the mix too. As incredible as an 8 for 8 donor match is, can I get some sort of discount?

As you can imagine my bright attitude was suddenly dim but I have repeatedly told myself that the same God that has watched over Mireya and replenished her health is the same God that will see us through our financial responsibilities. I don't know, but God does and I will continue to trust and believe because worrying adds nothing to this situation. Matthew 6:33-34 But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

You will likely never hear me mention the financial aspect of this journey again (I know never say never), we all know medical care costs and it will continue to. I'm very happy we have health insurance and the ability to have our daughters medical needs taken care. I'm going to have to pray and sleep on this one. Tomorrow is a new day! Dear Lord ~ I pray I don't walk to the mail box tomorrow and get another bill like today. Amen!

Lights, Camera and Love in Action

#TeamBolton has been featured in Mexico Restuarant commericals, Real Simple Magazine and selected for the launch of 'Momtourage' by iVillage. None of those features compare or have the heart and compassion behind the NBC Channel -12 On Your Side 'Act of Kindness' segment.

I shared last week how our friend, Frazelle Hampton nominated us for this reward. We had no idea what the completed piece would entail, but we tuned in at 5pm and watched everything from new laws on concussions, house fire disputes and the plague of ragweed that is affecting so many people right now. At the end of the 'First News' segment we watched our blessing unfold. We are so humbled by the outpouring of love, support and prayers by so many. People we know, many we don't know, but God knows and he has heard our prayers and is working this out on our behalf. Mireya's health is increasing everyday. We've seen more life and spirit in her than we have for months. That in itself is a blessing beyond words. It's incredible to see illness fading and life reemerging. Life is so precious. It's so easy to say those words, but to live them adds depth and a meaning that is indescribable.

Thank you to our families, our friends, our church family, friends of friends who have reached out to be a blessing, who have prayed and stood in this gap for us as we've gone through one of the toughest things we had to endure. In every obstacle, challenge and circumstance God has shown himself mighty and true to his word. Has it been a struggle at times? Absolutely, but he's given us a peace and a hope to keep pressing. I've said this many times before God continues to show us how much he loves us through the love, support and generosity of others. We stand in awe of his goodness and say 'thank you'. No longer feeling undeserving, but knowing that God can do all things and that he will use people to fulfill what needs to be done. We've had to learn to be better 'receivers'. We're humbled and grateful for it all.

If your not in the Central Virginia area, I've included a link to this incredible instance where love, support and community met last week. It was a wonderful surprise and we thank 'Michael & Son Services' for partnering with NBC 12 and their sponsorship of such a wonderful program. Thank you to Sabrina Squire and Matt Boyce (the Producer), you captured and presented this piece beautifully. Family battles major illness & other challenges - NBC12 News, Weather Sports, Traffic, and Programming Guide for Richmond, VA |

A #TeamBolton Facebook page has also been created. 'Like' the page and join the community to remain connected via FB. The donation page has also been a true blessing to us. Thank you to our friends for maintaining this site on our behalf and to those that have been positioned to be a blessing to us through this site. www.gofundme.com/mireyas-miracle.

Love and blessings to you all.

Three & 1

This translates to Mommy and three little ones at an appointment today and everything went GREAT! Mireya's counts are increasing. We still have a couple of areas that are holding their ground, but lower than expected. We continue to work through the dosing of her meds hoping to strike the right balance to see all of her numbers in a favorable range. A few of the medications require compounding which all pharmacies are not equipped to do. At least not for quite a few of hers. Westbury Pharmacy is great,but a bit of a hike. They are open every night until 11pm and deliver for a nominal fee of $3. It doesn't hurt that they have a 'Cookout' just across the way. That banana pudding milkshake is enough to make you want to drive over there as often as necessary. So the way I see it is that $3 delivery is saving me a couple of dollars and lbs.

Mireya has developed a bit of an annoying cough and a runny nose. We're watching her closely and believing we'll have no fever associated with this. Reya was her usual super helpful self. Helping to draw her labs and flushing her lines. She let us all know that 'flushing her lines makes her excited'. I just don't know what to make of this fascination with flushing her lines. Perhaps we have a future Dr. on our hands. Today was our quickest appointment to date. God answers prayers because this was not the day for a long appointment with three kids. The children were at the threshold of getting antsy and suddenly we were released. We didn't even get through the entire Barbie "The Nutcracker" today. Thank you Lord for orchestrating the flow and structure of this one so perfectly.

Ms. Claire stopped by to see us and she brought Mireya some really cool sparkly stickers. By the time we reached the elevator those stickers had been pretty evenly disbursed to each sibling. Continue to keep us in your prayers especially this week as we battle through this cough and other symptoms. God is faithful and continues to carry us through. Moments of weight and heaviness come, but he always shows us a bright spot and that is what we hold onto.

1 Peter 5:7 Give all your worries and cares to God, for he cares about you.

Keep Rising to the Top

We had a great appointment today. We only watched' Barbie's The Nutcracker' one time but quickly moved to 'Barbie and The Pegasus', another new favorite. All of Mireya's counts have increased. Praise God!!!! We've modified a few of her medications and she has been placed on another that eliminates bacteria that causes a variety of infections, the main concern pneumonia.

Mireya has become quite the helper during her appointments. She loves helping the nurses collect her labs from her line and her biggest thrill is 'flushing' her lines. This addiction started on the Bone Marrow Unit. Her tag line became 'I need to flush something' and it wasn't the toilet. She has become so in tune to caring for her line, which medications she's taking and wearing her mask has become second nature. The one thing she can not stand is having her dressing changed. If you mention that it might have to be changed in the 'next year' she gets hysterical. The dressing has to be changed every seven days and apparently dressing changes are dreaded by the majority of the kids with lines. The process requires everyone in the room to be masked and I'm usually lightly restraining Reya's hands and calmly talk her through each step. The Nurses are great at getting through this relatively quickly with many attempts of divert and distract.

Allie was in clinic today. She is doing well and preparing for Camp Fantastic next week. Sweet little Emily had been having a rough few days on the Bone Marrow Unit, but we heard that she may have been able to go home today which is great news. Ms. Claire also came by to visit with us today complete with her blue 'Precautionary Contact' gown (more on that later). Claire conducts a 'Coffee and Conversation' session each week for families of all pediatric in patient families. I had the joy of hanging out with her for a few sessions during our time in the hosptial and on the Bone Marrow Unit. Claire made a point of visiting with us every week and has caught up with us over the past few weeks in clinic too. Reya enjoys seeing Claire. We're going to have to coordinate a visit up to the Bone Marrow Unit because Mireya really wants to see her favorite nurse Ms. Leslie. She has asked about her a few times a week since we've been home. Ms. Leslie was off over the weekend Mireya was discharged, but her last words to Mireya was that she would see her the following week and she has not forgotten that. We're so excited that Reya's counts are rising and we're believing for continued increase. God is faithful and we're still trusting him in and through it all.

2 Chronicles 16:9 'For the eyes of the Lord run to and fro throughout the whole earth to show himself strong on behalf of those whose heart is loyal to him.'

We're Increasing

Mireya woke up today in a really good mood and ready to go to the clinic. I told her I hoped her upbeat mood was indicative of great things going on in her body. In-dica-what....the answer is YES. All counts are up today without growth meds. We are super excited. I've come to realize that appointments are going to require at least a 3 hour commitment and that is without having to do anything out of the ordinary. On occasion a variety of wonderful people donate things to the clinic for the children. This week Mireya picked out some really cute hats created by volunteers at 'Halos of Hope'. In addition she received a "My Pet Butterfly". One of the grandparents of a Hemocker coordinated the delivery of these cool gifts for the kids in clinic this week. There were lots of smiling faces as the kids watched their new 'pets' flying around in the jar. It's really neat, but I will admit it has scared the life out of me on a few occasions randomly flapping and tapping around.

Everyone was pleased with her counts. We are still awaiting the results of the test from last week which will give us a overall look at how the bone marrow transplant has taken by cell make up of boy vs. girl. Reya's kidneys are still lagging behind as a result of the chemotherapy and her magnesium continues to return low. In addition to receiving magnesium via her line, she'll also begin to take it orally to see if we can turn this number around. So we'll tweak a few things and counts at our next appointment will be very telling.

Were at Day 28. Each day we move closer to the 100 Day Mark. Everyday we are praying for an increase in Mireya's health and strength. She reminds us often of how happy she is to be here and out of the hospital. We continue to do all we can to keep her well and at home.

A New Kind of Freedom

We're happy to be home. It's amazing how Reya's spirits have been lifted. This is a new kind of freedom with many limitations, but we'll take it. We have a lot of 'guidelines' to adhere to and to help us to get through these next 100 days as best we can. The most obvious is she will continue to be a 'masked' girl for much of her time out and about or when having visitors outside of 'the pack'. 'OCD' is our new level of handwashing and sanitizing. It's just best that way without the anxiety of course. You can never wash or sanitize enough. Reya is now able to eat fruits that can be peeled. The one thing she wanted the most while on the Unit was grapes. Peeled grapes are you kidding me? I tried hard to dissuade that request with other yummy fruit offerings, but there is nothing like a Grandmother's love. Nene stood patiently at the sink and peeled several grapes for her girl to enjoy. Ok, so the visual is obviously half the enjoyment. She ate a few, but couldn't get past they fact that they 'looked' different and turned brown quickly. The same thing happened when the children had plums the other day and I had to peel hers. She took a few bites and aborted the mission. She can still have veggies, very well washed and cooked, cooked and double cooked...yum well done veggies. Leftovers beyond one day will not make the cut. No aged cheeses, deli sliced cheeses or meats. Visitors are limited and we need to avoid the woods and crowded places. Oh and staying out of heat and sun are also 'Top Ten'. We 'can' go out to a store, but must make this trip when there are 'less people' there. It's also advised her time outside be somewhere near 7pm-8pm. Imagine the challenge in that with three other kids, activities and just life. I wanted to run out yesterday just to grab a few things, but timing got the best of me. We were all set to go and then I realized it was nearing the lunch hour where countless people would be out. So I said we'll wait a few hours, but then a nap foiled the plan. Fortunately I have such awesome family and friends who are willing to run errands and pick up things that we need.

We also had plans to have our carpet upstairs replaced before Mireya returned home. Household carpets are known breeding grounds for everything we need to eliminate in our lives germs, bacteria, fungus and mold. Our plans were sidelined with Reya's health bouncing back at such a incredible rate (that of which we are thankful for). So pulling up the carpet and having her in that environment right now would be more harmful than the necessary end result. So 'ideally' we'll keep her in the area of the house with hardwood as much as possible and as Dr. Godder says 'surrounded by plastic' that can be wiped down and then of course she sleep and rest in her room. We've had the carpets cleaned which does not eliminate mold, but it will put a small dent in rate of growth of any existing mold. A mold test was conducted on our house which gave us some insight on potential issues and levels inside the house in comparison to the levels outside. The levels came back good, but there were recommendations for a couple of things that are considerations aligned with initiatives we already had dealing with air flow and purification. Plants are another area of contention. I don't have a green thumb so that doesn't have the same level of impact as some of the other items.

We've been in good rotation with our medications both orally and via the line. It takes a lot of focus to remain on task with giving several medications with different doses, three time a day. Not to mention cleaning all those little vials. Her IV medication takes about 3 hours to administer. We're free but pretty much need to remain isolated as best we can from potential health threats and issues. Our home remains our sanctuary and we'll creatively figure out how to allow the other kids to be the kids they long to be within the scope of their sister's limitations. Playdates are great, but it's hard because Mireya 'feels' excluded, so I'm having to come up with some cool and special things 'we' can do while all that other kid fun is going on. It would be nice to find a time and place that she and I can go to. Trust me I'm a resourceful chick so I'll figure out something. But if you have an idea or suggestion, let me know. It's taken a lot more to do all the things we need to, simply because we are all now back in the house and there's so much going on and to coordinate. We'll be pulling out those lists of people who said I can do this or I'm willing to do that and pulling numbers, "Now Being Blessed By #21". God is faithful and Reya's health is continuing to improve. Continue to keep her and our family lifted in prayer as we get acclamatedd and comfortable with where we now are in the process, Day + 25.

Back on the Block

We're back on the Hemoc Block and man it didn't take long to be right back in the flow of things. Reya was in a very upbeat and super jovial mood. Getting through vitals and the draws was a breeze today. We got to see Allison and her Mom. They were in clinic but had plans to come up to Bone Marrow Unit to visit with us and Emily. They were excited to see Mireya discharged from the floor. Allison is doing really well. She just returned from a week long camp sponsored by Special Love and it sounded like a totally awesome time. They gave Mireya the most adorable and fluffly stuffed puppy. It's so soft. We'll have to figure out a name for him. We had a chance to catch up with one another. Mireya enjoyed time 'playing' with Allison. It was so sweet of her to hang out with Reya for a little while. 'Fast Hands' are good for basketball, but not when your rotating through pictures on your camera. I had taken a great picture of Mireya and Allison together and 'accidentally' deleted it. Will have to try again another time.

It was a long day. We were in the clinic for over eight hours. Reya needed a blood transfusion. She has built up some antibodies so the search was on for a comparable blood product. Once they located what was needed, took a little over three hours for the transfusion to complete. Always arrive at the clinic with your bag of tricks full of snacks, a blanket, activities, and anything else to pass the time away. I learned that after our very first appointment. Reya's counts are a little lower than they were upon our release and she will require a new med to be administer via her line at home. There are a few other things to look out for with this infection to ensure it's not GVHD (Graft vs Host Disease). Everything we are seeing is within the scope of expectation, rather things that 'could' occur throughout recovery.

Connor's Heroes was here today and you all know how much I LOVE, LOVE, LOVE them. They are celebrating 'Christmas in July' and are handing out bags of really cool stuff for every child (patient, sibling(s) and friends) in the clinic today. I had a chance to talk with Lisa Spickler Goodwin (the Founder and Managing Director) about the positive impact and how much of a blessing Connor's Heroes is to so many. It really does help to have someone or a group of someone's that know and understand what it is like to endure the reality of 'the diagnosis' and all it takes to rally through treatment and recovery.

We're back in rotation and will be in clinic every other day for check and balances, counts and whatever else is needed. We're praying and thanking the Lord for increase in Mireya's counts and continued increase in her health. Being at home has been a huge lift for her spirits. She is happy and even more vibrant. God is good and continues to show himself through the love and kindness of so many. We love and appreciate it all. Thank you!!!