Day 50

Another day of great counts. Mireya's white blood count has almost doubled, her red count is above normal and platelets are through the roof. Thank you Father for increase!!! The Doctors are so pleased with Mireya's progress. She looks great, has tons of energy and with these types of numbers you'd believe she is further along in the process, but we still have so much to be mindful of. 50 more days and we're on a new wave of freedom. Her meds are still being tweaked. There are a couple of counts we'd like to see in a more comfortable range. That pesky cough has progressed and caused a bit of a stir with her physicians. Reya had to get a chest x-ray today to rule out pneumonia, and she was given an additional antibiotic as a precaution.

She has been on a medication for a few weeks that helps to diminish the possibility of pneumonia but it has been making her sick and she's been dealing with some of the less pleasant side effects of that drug. We will be going in later this week for a pulmonary treatment that can be scheduled once a month with a pulmonary therapist. After speaking with the therapist about how the medication is administered, it could be tricky, but we'll give it a try and pray that it gives us greater results physically. We'll monitor this cough and continue to look out for other markers for issues, but Reya is doing better than great! Her doctors said if the counts continue to rise at this rate we can be seen even less in the clinic.

School will be starting next week, we had hoped that the girls would be going to a preschool program together a few days a week. Unfortunately Mireya cannot go to school for the period of one year post transplant. To avoid any issues we've made the decision to keep Makinley home as well. Jalen being back in school (and exposed to pretty much everything) is definitely something we'll have to stay on top of. We are so excited that ASK has a dedicated preschool program for the kids of Hemoc. The program is one day a week and includes siblings. ASK recognizes the need for supportive programs 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. First STEP 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. This program is provided though the partnership with First Baptist Weekday School. I'm really happy the girls will have this opportunity for socialization, learning and fun.

Irene & Isabel

Watch out for those hurricanes that are female by description and start with an 'I'. Irene rolled through the East Coast and she caused some drama. The winds picked up, the power went out and trees went down all over town. We're thankful for favor through the storm. Our neighbor has a generator and came over to offer us the opportunity to plug up our refrigerator and few other smaller voltage items. It was a great relief to be able to save our food and have light on when needed. Big props and 'thank yous' to Westbury Pharmacy for braving the early hours of the storm to deliver Mireya's medication. Phone service was very sketchy, but I managed a few phone calls and text messages, but really enjoyed catching up on my Nook books. We listened to the radio for updates and coverage of the storm, but switched it up and got the nightly dance par-tay in. We had a variety of things to keep us entertained. The kids enjoyed board games, play dough and good ole' educational fun on the Leapsters for the mad sum of 12 AA batteries.

Jalen has become fascinated again with dinosaurs after a two year hiatus. You will often find him running around on all fours as if he's velociraptor or gallimimus or any of those other fast moving dinosaurs, and he is quite fast at doing it. Daddy and Jalen had what I'll dub a i-ran-ta-sauras race. Daddy had to show him that he 'could' do that too if he wanted to. It was hilarious and caught on tape!! We have a gas stove so cooking was not a major issue. Noodles, spagettios (Mireya's new favorite) and hot dogs were favorites for the day. The night ended with a big sleepover between the bed and futon. Overnight, I heard a tree drop close by, but it was so dark it was hard to figure out exactly where it fell.

Hearing that tree fall took me back to several years ago when Isabel came to Richmond. We were living in a different part of town at the time. She was a much more fierce storm than her home girl Irene. Isabel wrecked shop. Not only did she shut down power for days, but she shut down highways, byways and most any other way you wanted to go through. I'll never forget the sound of trees falling all around us. It was very frightening and unnerving to see trees snapping in half or coming up at the root. After a day or so the neighborhood had several block parties. Neighbors were firing up their grills and cooking out for anyone and everyone that was interested in stopping by for a meal. Clean up from that storm took quite a bit of time. It was big business and very lucrative for companies that did tree work or were equipped to help with the debris or damage from Isabel.

We woke up to chain saws buzzing all around us. I even saw a young man riding his bike with a chainsaw in hand looking to 'help' and 'earn' some cash at the same time. 85% of the city lost power and many are still without it. It's so easy to take the simplest necessities for granted. Irene came in swiftly and then left us with a beautiful day of sunshine. Sunday morning reminded me of time spent at my Godmother's house as a child. Blueberry pancakes and bacon for breakfast. No television, no hustle and bustle, just a quiet stillness accompanied by a soft, gentle (and much needed) breeze.

We took the opportunity during the daylight hours to do some tasks that were made for days that you had nothing but time on your hands. We were able to get some things accomplished and organized as we waited for our electricity to be restored. It is estimated that our power will be back on by Wednesday afternoon. Prayerfully it will be on before then. We are so thankful for God's hand of protection over us through and during this storm and we continue to pray for everyone's safety.

Psalm 4:8 I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety.

Man Down Situation

Irene has come and gone. She left quite a mess here in VA. We have been without power, but all is well. We are together and safe. We pray everyone else is safe and well also. This is my first mobile post (isn't technology grand). I have lots to share and hope to be back to full-status blogging soon. Take Care & God Bless!

God's Abundance

#TeamBolton will be featured 'live' on the radio this week. We've been asked to participate in the 2nd Annual Miracle Children's Hospital Radiothon. VCU Children's Hospital has been a blessing to us and we are super excited to share Mireya's story and bring awareness and support for such an awesome event. If you are available on Thursday, September 1st @ 1:30pm, tune in to 98.9 Liberty or 107.3 Big Oldies for #TeamBolton's live interview.

Some other exciting news we received this week is Mireya's physicians submitted her name to 'The Make A Wish Foundation' and as a result she is eligible to receive a wish. I had imagined this organization as one for terminally ill children, but they actually grant wishes for children with life threatening illness that require treatment for 6 months or greater along with some other medical criteria. I never would have thought of such a thing, but I'm so happy that her doctors did. I'm elated that as a result of this illness, treatment and year long road to recovery that she will have something so very special arranged just for her. Something she can remember and hold onto other than hospital stays, hair loss, sickness and isolation. I don't know all the stipulations and guidelines of granting a wish, but she has two volunteers that will be meeting with her in the next week to begin designing her wish. I'm still in awe of this news, but so happy for Mireya.

#TeamBolton was contacted last week by a company that has positioned themselves to be a blessing to us. There were several initiatives we were given to sufficiently provide a environment conducive to Mireya's health and recovery. Some of those items have been sidelined at least until we get outside of our 100 days and others were simply a matter of finances. God will make a way. He will position those with a heart to fill 'a need' with the opportunity to be the blessing. Within days of speaking with this company, they purchased and shipped the recommended air purification system to us. It is similar to the system used in her hospital room on the Bone Marrow Unit. We now have an assurance that even with the carpet in her room and other pollutants that she will have little to no issues because of the high efficiency of this system. There are no words for how incredible this is. We have some other items to be addressed that this company is committed to helping us with....speechless, but so appreciative.

Thank you to so many of you that have been a blessing to us through prayer, meals, donations, gifts for the kids, household help and the list goes on. We pray that your kindness will be returned to you and may you be blessed with all things good.

Philippians 4:19 And my God will meet all your needs according to the riches of his glory in Christ Jesus.

East Coast Earthquake

Wow...5.8 on the scale. Suddenly the house was rocking and swaying. I had absolutely no idea what was going on. We live on a golf course and during a really good thunderstorm we can 'feel' the roll of thunder along the course, but this was different. I ran to the window to make sure a storm had not snuck up on me. It sounded like one of those instances where you load your washing machine unevenly and it starts making that noise that says 'come and fix this problem...NOW,' that wasn't it either. I ran upstairs and my son said we were having a 'earth tremor'...thank you Meteorologist Jalen. I thought 'could' this be an earthquake? The bookcase was shaking, my bed was jumping up and down and all the while little Kinley-locks was fast asleep in her bed dreaming of 'just right' porridge. It was like I was standing in the middle of a john boat as the tide was rolling in.

I turned on the TV and the soap operas were in full swing. I was surprised there was no high pitched warning or alerts scrolling at the bottom of the screen. I jumped on FB and realized I was not alone and that friends as far away as NYC had felt it too. I called loved ones to make sure they were alright and fortunately everyone was ok. As a result of the crazed gunman fiasco at Discovery, they have a new alerts system, so I was fully aware of what was going on with my sister via text and phone messages. I couldn't imagine living out West where this happens more frequently and at higher magnitudes. There were at least three aftershocks experienced well into the night. None of which I felt. The media circuits spent the remainder of the day giving us helpful information on what to do (or what we should have done), what to expect (cellular and land line phone service was temporarily interrupted) and showing us some areas that did have a considerable amount of damage done as a result of the earthquake. My house is still standing and I'm grateful it was not a worse situation and we are all safe.

Psalm 121:7 The LORD keeps you from all harm and watches over your life.

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!

Day 43

Mireya had a great appointment today. She did her Nurse Betty bit (took her own blood, prepared her labs and flushed her lines) but then tried to do a disappearing act when it came time to change her dressing. We managed to get through that without incident. Mireya continues to have favorable progress. All of her counts have increased. Her plates are almost 270k. Thank you Jesus. Her white and red counts are up and her magnesium level is showing a slight improvement. I believe as Mireya continues to take the magnesium via her line and orally we will see that number increase. We saw Allison in clinic today and her counts are fluctuating quite a bit, so please keep her in your prayers. We are believing for an increase in her white cell count. Mireya's medical team is very pleased with where she is and as a result we will only need to be seen in the clinic once a week going forward. I'm so excited. 57 more days until we hit the 100 Day Mark. We are trusting to reach this milestone with no issues or incidents.

Thank you so much for your continued prayers. God is so good and we're so grateful that Mireya is continuing to do so well.

Psalms 100 (KJV)
¹Make a joyful noise unto the LORD, all ye lands. ²Serve the LORD with gladness: come before his presence with singing. ³Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture. ⁴Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name. ⁵For the LORD is good; his mercy is everlasting; and his truth endureth to all generations.