Holding Pattern

Mireya's visit this week showed a small improvement in one area and a steep decline in another.  It's hard to gauge progress while fighting this infection.  We're in a holding pattern for another week to see how Reya's body recovers.  Our spirits are lifted as we focus on the expected end of our sweet, courageous fighter 100% healthy.  God is well able to do it. The weeks seem to take forever, but we know everything can turn around in an instant and that is what we're trusting God to do.

We love and thank you for your continued thoughts and prayers.  

Despite it All

Sometimes it doesn't matter what life throws your way.  Remember who you serve, who stands beside you and keep smiling.  So thankful for my husband.  Through the ups and downs, we have one another and God's got us, so we continue to smile and give him praise despite it all.  

Off to the Ball

We had the joy of attending the 2nd Annual Masquerade Ball for the children and families of ASK.  I had not planned to attend the ball (my glass slippers had put in enough miles throughout the week), but Princess Mireya was adamant she 'needed' to make it to the ball.

The transformation of the hospital cafeteria to the party space was amazing. The festivities included makeup, nails, face painting, tattoos, fabulous cupcakes and mask making. A very special 'thank you' to the staff of Envy and Bombshell for coming out and giving back in such an awesome way. The kids loved getting pampered for the ball.  It was wonderful to see everyone outside of the clinical environment for a time to smile and dance the night away.  Line dances, first dances, soul train lines, cupid shuffles, wobblin and hanging on in the conga line was so much fun.

There was a wonderful assortment of food. You can never go wrong with Chick-Fil-A nuggets for the kids.  The Macaroni Bar (full of toppings) was also a hit, and everything was served by those that poke, prode and question you about your health week in and week out. The kids got a kick out of that.  There was an Event Photographer and a Photo Station for impromptu pics. It was nice to have a few hours to enjoy being with family and friends celebrating the ups, downs and joys of our respective journeys and taking time to remember those that fought to the bitter end of their illnesses.  It was definitely before the stroke of midnigt that I rounded up my Prince and Princesses.  We clicked our heels and made our way home.  Thank you ASK for such a wonderful evening!

Home on the Range

Three & 1 @ Hospital

Mireya was discharged from the hosptial this weekend.  The bacteria growing on her culture was identified as a type of influenza that has not been commonly seen in about five to ten years.  We were sent home with a heavy hitting antibiotic that will have to be administered via her line for the next ten days.  Mireya's counts are borderline for platelets and a blood transfusion, but the decision was made to wait and see what her body is able to do before our appointment this week.  If anything changes with her physically we'll need to come back to the hospital before our scheduled appointment.  It was a long week, but we are happy to be home recuperating.

We will likely revisit discussions of repeating the transplant via the boost. We're still believing God to avoid having to go that route.  We all recognize her body is fighting this sudden illness and as a result her counts are all over the place.  Continue to lift us up, we're praying for swift recovery and increased counts.  Even in the midst of the madness, God is present and working it out.

Deuteronomy 3:16  Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.

Challenging Week

Mireya was not feeling her best earlier this week.  Her energy level was low and all she wanted to do was rest. I took her temperature and it was at 99.3.  Not high enough for major concern, but something to keep an eye on.  I made a few decisions over the last week, allowing Mireya to participate in some group based activities. I want to believe she didn't pick up anything as a result.   Regret and guilt all wrapped in one...sounds a bit harsh, but the last time I 'decided' to let Mireya do something similar, we were presented with fever and a hospital stay.  Isolation really is no fun and over the last few months with the highs and lows of her counts, I've been so cautious about what we do and where we do it.  It's hard, but times like these I wish we could just live in the bubble, protecting her from all the things that 'could' potentially wreck havoc on her body, but that is not reality.  Some things I can control, others I cannot.  My name is Venus Bolton and I have a daughter that is immune suppressed and fighting to get well. Is there a club for this?  Yes, it's called LIFE...ok enough sarcasim and self-doubt. 

Later in the day, Mireya started complaining and crying because her head and stomach were hurting.  When I checked her temperature, it was up a bit 100.2 just below the threshold that would require us to go to hospital. I called Hemoc to make them aware of what was going on.  The Nursing staff was going to speak with the Docs and let me know if she should come in.  They called back within about 15 minutes and her fever had risen to 101.3.  There was no question at that point, we needed to pack a bag and head down to the ER.   I gave her a dose of Tylenol and posted a quick message on our Facebook page and Community Group to solicit prayers as we journeyed down the road.

When we arrived, we went through the cursory regimen.  Counts, checks, IV fluids and medical history and happenings.  When Mireya's temperature was taken, she did not have a fever. That fever was no match for the power of prayer and the practical/physical application of good ole' Tylenol.  A winning combination of spiritual and physical/practical applications working together for the good (trust me Tylenol has never reacted so quickly to a high fever on its own). Her counts came back really low, which was very disappointing after last weeks increase.  She would need platelets, but the additional test did not show anything of concern and we were scheduled to be discharged. The attending Nurse checked Reya's temperature before we left and it was 102, which concerned me.  I pushed the issue and challenged the call, but we were still discharged.  The general census amongst the staff was we should be covered overnight since we received the IV antibiotic and had an appointment in clinic the following morning. I didn't necessarily agree but after 6 hours of sitting in limbo, going home was a welcome option and we would deal with whatever else came in the morning.

Mireya's fever persisted overnight and she also began to have tremors as the fever spiked.  She had a low grade fever when we arrived at clinic but it quickly increased 101.8 shortly thereafter.  Reya's medical team was concerned particularly with the presence of tremors.  Tremors can be associated with infection.  There was also question as to why she was released the night before? Mireya needed a platelet transfusion, but we would have to wait until her fever subsided because one of the signs of problems during transfusion is an elevated temperature.  It would be difficult to determine if Reya was having a reaction or issue due to the transfusion because of her fever.  So we waited for the fever to go down and then administered the platelets without issue.  The decision was made to have Mireya admitted so she could be monitored more closely.

Day 3 and Mireya is doing better.  Weight loss has been a concern, but her appetite and energy level have started to return. The Nutritional Specialist visited with us and has added some additional snack options to help boost her weight.  A strain of bacteria was found in her bloodwork yesterday, as a result she was placed on a more powerful antibiotic. Reya's fever has diminished, but we want to watch the progression of the bacteria on her lab to determine if she will need IV or oral meds when she is able to go home.  We are hoping that will be tomorrow.  Reya's counts continue to be suspect, but some of that is to be expected as her body fights through this infection.  The hospital Pharmacy administered Tacrilimus to Mireya the first day we were here and the level was not very high.  We brought our capsule based Tac to the hosptial for Pharmacy clearance and approval and after just one dose of that prescription, her Tac level was up to 10.  That theory remains intact.  We'll wait out the day and hope Mireya continues to progress without issue so we can go home.

Child Life (we love Child Life), the staff, along with the Hospital's Education Program and ASK Outreach have been so wonderful to us.  The activities, resources and familiar faces truly make our time here more enjoyable and bearable.  Seeing Mireya's smile return has been priceless.  Thank you for your thoughts, prayers and messages/posts of love. It is truly uplifting.  Words will never express our gratitude and how much we appreciate your support and encouragement.  We are thankful to have loving, caring and thoughtful friends/family cheering us on and praying us through.  God Bless you all!

Tea at The Jefferson

Last weekend the Ms. Chesterfield Princesses spent time with Ms. Jacquelyn Thomas (The Etiquette & Protocol School) for a Etiquette Workshop. I wasn't certain Mireya would be able to attend because of  health challenges earlier in the week, but I'm glad we made it. Reya's face lit up when she heard 'tea party'.  The girls learned the "do's and dont's" of dining exquisitely while enjoying tea and a variety of dainty treats.  Each Princess received a certificate, along with tokens and gifts of love at the completion of the Workshop.  These Princesses are 'certifiably fabulous' in Dining Etiquette.

The 'Princess Mums' learned a thing or two from the Princesses as we gathered at the Jefferson today for a Teddy Bear Tea.  The lovely Ms. Chesterfield, Delesia Amanda Watson was also able to join us.  All the Princesses look up to Delesia.  They especially love the beautiful 'big' crown that adorns her head. We won't talk about the mad rush and coordination it took to get Mireya to the event or how Mommy forgot Mireya's appearance gear (yikes).  Reya politely asked me 'repeatedly' not to forget her crown and sash again.  She definitely felt like one of those Sesame Street exercises where 'one of these things is not like the other'.  I'll surely work hard to avoid making that mistake again.  The girls loved hearing Delesia share about all the events leading up to the Ms. Virginia Pageant.  It's a very exciting process and we are looking forward to getting together for a Send Off Celebration as Delesia and our Ms. Chesterfield Teen, Olivia Fletcher prepare for the 'BIG' titles in a few weeks.  

Miss Lillie the Clown also visited with us at the Jefferson. Miss Lillie has some serious skills and is dangerous with a set of balloons.  The Teddy Bear Tea was a delightful way to spend the afternoon.  Pinky fingers held high while enjoying a delicious fare amongst sister girls and friends.

A Day of Support for CMN

The Bolton Family was contacted to participate as 'Celebrity Baggers' at a local Walmart to support the Children's Miracle Network.  Many of you remember we participated in the Radio-Thon for Children's Hospital of Richmond last year.  This year Walmart has partnered with Children's Miracle Network and a challenge was issued to area stores to add some fun to their efforts of raising money. The store that raised the most money over the last week, would have 'Celebrity Baggers' come in to allow the community to 'see' the difference they are making in the lives of who they consider their celebrities...the children and families receiving care at Children's Hosptial of Richmond (CHOR).

The Brook Road Walmart was named the winner of the challenge.  Ms. Virginia was also invited to participate in the event.  Unfortunately, there was a conflict with another previously scheduled appearance, but have no fear, the Ms. Chesterfield Princess program was in full effect. It doesn't hurt that Mireya is a patient and a Princess...have crown, will travel.  Thank you to Linda Thomas (Director, Ms. Chesterfield Princess Program) and her son, Corbin Thomas for coming out and being celebrities with us for our fifteen minutes of love and fame.  Ms. Chesterfield is a part of the Ms.Virginia/Ms. America organization and we made sure they were well represented by our program. The Children's Miracle Network is the charity of choice for the Ms. America organization, so it was a perfect pairing.

We had an awesome time serving cake, bagging groceries and thanking customers and employees for all their work and contributions.  I believe it's very meaningful to see how your donations are making a difference in the lives of others. We also had the opportunity to meet another local family of celebs.  People were touched by our presence and literally started handing us donations.  It was amazing.  One young lady inquired about which of my children was in treatment? I shared Jalen and Mireya's story and how CHOR has been such a blessing to us over this last year. Minutes later she came back to ask if we were taking donations and told me she was going to find some money to give. When she came back and handed me her donation, we embraced and she began to sing.  People around us stood in their tracks as she poured words of encouragement, blessing, and victory over Mireya and our family.  I will never forget this encounter.  Thinking about it brings tears back to my eyes, it is one of the most beautiful things I've experienced during this journey. The Lord sent a beautiful, sweet, angelic voice to profess his goodness for everyone to witness. She told me as she listened to me talking about Mireya & Jalen and how the Lord had been moving in our lives, she was moved and it stirred something up in her.  WOW...clean up on Aisle 29, someone please pass the tissues.  It took a minute before I could really get myself together.  That was such a God moment.  It blessed me beyond words.  I don't know her name, I may never see her again, but I thank her for the boldness she had to come forth and be a blessing to me.  I thank God for that outward sign of encouragement and love.

The children enjoyed sticker and candy duty, especially Ms. Sweet Tooth Makinley.  I can assure you for every Lifesaver she handed out, she ate one (the old one for you, two for me trick). The hour went by so fast. I could have stayed for another hour or maybe longer, well at least until the stickers and candy ran out.  The time we spent among those who gave large and small was wonderful.  Walmart has raised over 30 million dollars in one month for the Childrens Miracle Network. Our local area stores have raised close to $200,000 within that same time frame.  In addition to Walmart, Sam's Club, Food Lion and Rite Aid also have campaigns starting in the area.  If you frequent any of these stores consider a donation while checking out to make a difference in the life of a child and his or her family.  God Bless you all and 'Thank You' to the Children's Miracle Network and our local Children's Hospital.