Midnight Fiasco

Mireya is doing well.  The results of her blood culture will take at least 48 hours.  She continues to get rounds of fluids and antibiotics.  In the past, Mireya has had a reaction to one of the antibiotics and requires pre-treatment with Benydryl.  Benydryl tends to make her tired, so she was able to rest pretty well through the night.  Our nurse came in to ask me about Mireya's Hickman Catheter.  She said notes from the ER stated they 'accessed Mireya's port' which confused her because she knew Mireya had a Hickman Catheter.  Within about ten minutes, I was greeted by two very concerned doctors explaining to me a serious mishap that occurred while we were in the ER.

The ER staff gave Mireya one dose of her antibiotic and noted it was administered through her port (a port is a line accessible under the skin).  When lines are accessed they need to be flushed and heparinized.  Heparin is a blood thinner used in varying quantities to prevent clotting in the line.  I specifically had to correct two doctors and one of our nurses because they kept referring to her hickman as a port.  Our ER nurse asked me how much heparin we used at home?   I gave her the amount per line and she flushed Reya before we were sent up to the Main Hospital.

The type of line you have determines the amount and concentration of heparin received.  Mireya was mistakenly given a higher concentration of Heparin and double the dose she should have received.  I was mortified and infuriated...so basically your telling me I'm having a Dennis Quaid moment?  If you don't recall the story when Dennis Quaid's twins were born, they were given lethal doses of heparin in a California hospital.  The Quaid's ordeal was due to a similar issue with administering doses of the incorrect concentration of heparin.  A report has been initiated downstairs to investigate how this occurred.  Both of the doctors were very apologetic and equally concerned about the serious medical implications this had for Mireya. 

Mireya's platelets are very low. Platelets are responsible for clotting the blood. The major issue with low platelets is falls or hitting the head and having a bleed situation where the body is not able to clot the blood appropriately.  Mireya's platelets had to be rechecked and her blood clotting functionality measured. The Doctors were uneasy and urged for an immediate transfusion to boost her platelet count. We were trying to hold off on all transfusions unless absolutely necessary.  The results of the test showed her platelets had decreased by 4k.  At that point a transfusion was inevitable.  I was surprised her platelets were wiped out at that rate in such a short period of time.  Her blood clotting functionality was okay and it did not appear that she would have any adverse affects.

I thank God for his hand of protection and for our Nurse who recognized the inconsistency of notes and the actual situation.  I know there is so much going on down in the ER, but this incident could have been avoided.  It's a lesson for everyone, one I talk myself through some days....stop and focus on the task at hand so we can give our full attention to what is before us, instead of already mentally being in the next place. Thank you Lord that our Warrior Princess slept like 'Sleeping Beauty' through it all and she woke up ready to face another day with a beautiful smile on her face.

The Heart of The Children

So much has transpired in the last few months.  The love and support of many is still so amazing.  Over this 11 month period, Mireya has been an exemplary patient and a true fighter.  She presses through with a resilience and a flow that is beyond words.  We try not to place a lot of emphasis or focus on her illness.  We do what needs to be done, have our checks and balances and keep it moving.  God is working it out and we're pressing toward the mark of victory over this diagnosis.

Mireya was 3 years old when this all began, about 4 weeks before her 4th birthday, and a brand new 4 when she was diagnosed.  She has been a trooper.  There is a lot about this journey she does not have 'words' for which has presented itself at times as what I'll describe as melt downs.  Something very different from a tantrum.  It's apparent in those moments, she is overwhelmed with her emotions.  For all she has gone through, I think she is entitled to a few breakdowns.   I've certainly had my share throughout this ordeal.  Please pray for Mireya's emotional well being and the ability to continue to do all that is asked of her as we work our way to better.

As Mireya gets older she is more 'aware' of things and has been more vocal about things upsetting to her. We had not realized how sensitive she's gotten about her hair until a recent melt down involving her sister. I took Makinley's hair down as I prepared to wash it.  Mireya's hair is growing back beautifully, but when you have a three-year old sister with hair down her back sashaying around you just might have a moment.  Anyone remember those 'You Just Might Be' books, a lot of those points were hilarious.  This not so much. It struck Mireya like a freight train.  She started crying and sobbing that she wanted her hair back.  She wanted long hair.  It broke my heart.  She asked me why I had her hair cut.  I sucked back the tears and explained to her that one of the medications she took last year made her hair start to come out and we made a decision to cut it so we didn't have to watch it fall out. That was a hard day, but I'm glad we did it that way.

We've never made a big deal of Mireya's hair.  She's gotten into wearing hats, which I could never get her to do before.  We've tried a few neat things with her hair as it grows, which she's liked.  We have cool hair accessories, but deep down in her heart, she misses and wants her hair.  That is a very real emotion.  It's just not one she has voiced until now.  I tried the whole your hair is still longer than Mommy's (enter the Family Feud strike gong) that does not work anymore, because Mommy just keeps cutting hers every month or so.  It hurt to hear and see. We are believing Reya will attend school this Fall.  It's definitely different going from a program with other kids in treatment that look like you to the big wide world of public school.  Keep this in your prayers. We hope highlighting individuality and her uniqueness will reinforce how she feels about herself as opposed to focusing on hair.

Summer has always been a time for us to to enjoy water activities.  It's something we've obviously had to curtail due to Mireya's Hickman Catheter.  Mireya asked me last night if she could have a pool party when she got her line removed.  Again my heart sank at the innocence of the question and the huge milestone she realizes it is.  I told her she would 'absolutely' have a pool party when her line is taken out. The first of many parties and celebrations.  So we definitely have that to look forward to.

My Super Hero boy/brother Jalen has also been walking around with a heavy heart.  When his sister went into the hospital, he was worried if she didn't get better that he was going to have to 'do something' again.  Jalen and I talked at a base level about his having to 'do something' and he began to get physically uneasy just speaking about the possibility of being his sister's donor again. Since then, we've broached the subject with Jalen very gingerly. There is no need to discuss something that is merely a 'maybe', but also Jalen is the kind of child who would be consumed by reliving in his words what was 'a good thing for his sister and her life, but he didn't have a choice about doing it".  Jalen did great during the transplant process, but how a child processes events varies and obviously can be a frightening place.  A transplant via the boost would require more this time and it is likely we will only share with Jalen what we deem necessary when we have to.  I don't want him internalizing what appears to be a concern for him through his own deducution of information.  Bless his heart.  

The one thing Jalen has wanted or asked for over the last year is an Ipod Touch or an Ipad.  I was surprised to see that several of his classmates had an Ipod Touch.  He has asked a billion times about the possibility of him getting an Ipod Touch or an Ipad.  I told him maybe he could get one for Christmas, but that it was a really big gift for little boy, but just maybe.  I still happily live in the world of the Blackberry, but after investigating the Ipod Touch as opposed to the Ipad, I'm inclined to go a few hundred more for the Ipad.  It just seems to make more sense because it would be a gift that they all could use.  I am making a confession....IF Jalen has to go through being a donor a second time, I'm going to do all I can to have an Ipad in his possession as he recuperates.  The gift he is giving his sister is priceless and I will do what I can to make that happen.  I'm proud of him.  Even in his fear, he knows what he is doing is helping his sisiter's life and even if he feels he doesn't have a choice he knows it's a very good thing.  So if your in the know or have a connect, that is definitely my hearts desire for him should we have to repeat this process.

I've spent a few nights mulling over these conversations and instances with both Jalen and Reya, all of it filling my eyes with tears and my heart with sadness, but I will delight in the day that Reya's hair has grown out and she can take a bath with more than a few inches of water or she can jump in a pool.  Well I'll be delighted, but with a different appreciation for doing two little curly heads.  I will relish the moments where she is free of all issues and Jalen can relax without rotating a thought in the back of his mind about being a donor for his sister.  If he happens to be downloading an app on his new Ipad, more power to you big brother, you more than deserve it!

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.  

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!

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.

Turning Around

We've been in clinic twice this week for counts and results of Mireya's bone marrow biopsy.  On Monday her counts showed a small improvement.  The information on hand from her biopsy showed all three of her cell lines present along with the cells of origination (mother cells) which is a really good sign.  The final report would show us the make up of those cells either boy (Jalen) or girl (Mireya) and hopefully give us an indication of what or where the issus lies.  Mireya's white count increased and her hemoglobin has held steady. Her platelets have continued to go down, but at a slower pace which tells us her body is making them.  This was very encouraging because we expected the possibility of a platelet transfusion. We hope to avoid any transfusions if possible, because as the body receives transfusions, it takes on the genetic makeup of the blood or platelet product and can cause issues should another transplant or a 'boost' need to take place.  We left clinic with favorable news, one step closer to figuring out this puzzle.

In today's appointment, we received the final report from pathology which showed favorable percentages of Mireya's cellular makeup.  All her counts were up, even the platelets which is typically one of the last lines to rebound.  Prayerfully they will continue to increase.  There are a few theories as to why this has occurred, it could be that Mireya was taken off the Tacrilimus prematurely. Tacrilimus is also one of the most toxic medications in Mireya's regimen and we were quite pleased when she was able to come off of it. Tac has been used to suppress Reya's immune system post transplant. She has been doing exceptionally well up until this point and there was no indication that taking her off of it would suddenly cause the small percentage of her original cells (girl) to destroy everything it deemed 'foreign' or as bad in her system.  Wow, even on a cellular level, girls don't go down without a fight.  So this is the one instance where I'm denying GIRL POWER and I'm cheering on the boys.  C'mon boys you can do it, put a little power to it! Go team Jalen!

Another thought is she contracted an unknown and undetected virus that her anti-viral meds are not equipped to address and as a result her body identified those cells as a threat and in turn started destroying all cells?  So we continue to try and figure out what has caused stress to her bone marrow to the point that it stopped functioning optimally.  We also discussed how similar instances have occurred in other patients when Tacrilimus has been removed or decreased.  It is a fine balance of timing and dosing, so Mireya will be monitored via labs and counts more frequently, but it appears her body is working to recover.  Thank you Lord!  Additional tests were run today to identify any possible viruses not detected previously.  There has been less bruising and petechaie present and that is also a good indication of a turn around.  God will turn it around for the good! We are believing Mireya's health is increasing and her body is repairing itself.  We're still standing on Phillipians 1:6, and we know that everything is working together for our good.  Thank you for continuing to keep her and our family in your thoughts and prayers.

God is Sovereign and is faithful to complete every good work he has started. 

Ready, Set, Go!

It's been a long and eventful few weeks.  36 hours prior to our trip we were told we would not be able to go (sigh), but received a call later that day that we could (hooray).  So less than 30 hours before our scheduled flight we were coordinating, strategizing and preparing to go to the magical place where dreams and wishes come true.   God will work it out and make a way!

Mireya's counts continued to decline following her first IVIG, so a second transfusion was scheduled the day before we left.  Nothing like sitting for several hours in clinic when there was so much to do at home, but we need to cross all the t's and dot all the i's to see if we can get these counts to turn around.  In order to test the effectiveness of the IVIG, labs needed to be drawn within 24-72 hours after the infusion.  We made our way to Phillips Hospital in Florida to have Reya's counts checked.  Her white and red cell counts increased but the platelets continue to tank and as a result she continues to have some bruising and petechaie. We had an AMAZING time away!  It was so wonderful to not be consumed by procedures, clinic visits or illness for several days...just fun, smiles and incredible memories.

We arrived home very late last night and were in the clinic very early this morning for Mireya's second bone marrow biopsy.  I was in the room, but choose not to watch the procedural portion of the biopsy.  One time is definitely enough.  We expect to have some preliminary results by Friday and hopefully some plans on our next steps. 

Continue to keep us in your prayers and check back for the full monty on our trip to Disney.  Love and blessings to you all.

The Wait Isn't Over

Our follow-up appointment this week was not as favorable as we would have liked.  The biopsy last week was a 'fail' and as a result will have to be repeated.  My heart sank after hearing this news.  They were able to remove a good bone chip sample, but apparently there was not enough of the marrow substance available to do the in-depth testing needed.  From what they could see, it was determined there were no 'blasts' present on the slides from the aspiration of her bone marow.  When a higher than normal ratio of blast cells are found it is usually indicative of the common blood-related cancers.  This is a discussion 'first' for us as it pertains to blasts, but we know certain medications taken during our treatment plan can increase the probability of certain blood-related cancers, so it was good to speak and rid ourselves of any additional madness.

It is disturbing to imagine having to go through another bone marrow biopsy.  It took a lot to sit in the room while they performed the biopsy. Thank goodness Mireya is anestisized.  Sitting through it again is not high on my list of things to do, so perhaps I'll 'sit out' of that particular portion of the procedure when/if it is necessary to repeat. Mireya's counts have also decreased this week.  We were hoping to see some sort of rebound and that her cell lines would increase if only in small increments. Without the sufficient test results, the medical team is at a loss of what is causing these problems. We were pretty much off the Aplastic radar and placed in a rotation to ride this out for another few months, remove the Hickman and then come in for routine follow-up to track our success. The fact that her counts have decreased and there is no evidence of a virus or infection is puzzling.

Upon further review of Mireya's labs over the last several weeks, and the downward trend of certain counts, the Head of Pediatric Hematology & Oncology, decided she would like to first give Mireya a IVIG infusion to see if possibly that will jump start her counts to increase.  We did two rounds of the IVIG close to a year ago with no success, but at that time Mireya's body was not producing or holding any counts consistently without continual transfusions.  Dr. Godder believes it could be ITP.  ITP was the initial thought when all this started until about two weeks later when we saw significant drops in her white and red cell counts. It wasn't until after those results that she was diagnosed with Aplastic Anemia. We're not 100% convinced it's ITP as ITP only affects platelets, especially with the dip this week in her hemoglobin count.  We are open to trying the IVIG and see if it makes a difference before repeating the Bone Marrow Biopsy.

Many of you know Mireya's Medical team submitted her to the Make A Wish Foundation.  The Make A Wish Foundation is an incredible organization that grants wishes to children battling life-threatening illness.  Mireya was approved for a wish and would like to go to Disney World to meet Princess Aurora (a.k.a Briar Rose and ultimately Sleeping Beauty).  This trip is scheduled within the next several days.  It has not been determined if we can still go.  Based on this new turn of events, the ability to travel for now is up in the air literally a day or two before we're to board the plane.  Mireya's health is the of the uttmost importance.  We consciously decided not to tell the children about the trip when we found out several months ago. One, anything could happen (tada) and two I really didn't want to be asked daily 'is it time yet'.  However,  Make A Wish and a awesome company in Chester, Cellular Sales  threw Mireya a 'Send Off Celebration' a few weeks ago. Mireya, is now fully aware she's scheduled to go to Disney World shortly after her birthday and is really looking forward to it.  I definitely have a lot to share about the Send Off and how amazing Celluar Sales in Chester is.  Ironically, this entire downward sprial began the morning after that celebration and I've not had the chance to share how incredible of a night that was for us (more to come, so look out for that post soon).

The IVIG is scheduled for tomorrow on Mireya's birthday.  Not the way you want to spend your birthday, but trust me we will celebrate BIG when she gets home.  Reya will have to be retested with 72 hours following the test and we will go from there.  If there is no significant increase in the counts, the team plans to repeat it a second time. It is not uncommon for a patient not to respond after just one treatment. This is where it may get tricky as far as travel timing.  We do not want to have issues that require medical attention or transfusions while we're out of town, nor do we want fatigue to be an issue for her with a hemoglobin level that is dropping.  It is possible to give Mireya a blood and platelet transfusion prior to going to Disney to tide her over through the trip. We're believing we'll have positive results next week.

If there is not a favorable response, then we repeat the bone marrow biopsy to determine the cellular makeup of her body. Specifically her cells vs those given to her by Jalen.  If all else fails, she will have to receive a 'boost' of cells from Jalen.  This procedure would not require her to go through a full transplant with chemotherpy and the full scope of meds again  It most cases, the 'boost' has proven successful when a bone marrow recipient has exhibited these issues and other treatment options have not worked.  Jalen on the other hand, would have to endure the same process to harvest his bone marrow.  I'm hoping we don't have to go this route because I really don't want Jalen to have to go through this again. However, I realize God gave us Jalen as a way out and we are thankful we still have her brother to draw life from for his sister.   Continue to lift us up as a family.  This has been an emotional pill to swallow, but we know nothing is to hard for God.  Even as our emotions fluctuate and we struggle with finding ourselves in this place right now, we know where our trust lies and our faith has not wavered from that truth.

Be strong, all who wait with hope for the Lord, and let your heart be courageous.  Psalms 31:24

Bone Marrow Biopsy

During our visit to the clinic this week, Mireya's counts remained virtually the same.  There was a slight reduction in her hemoglobin and a small rise in her white count, but relatively speaking they were hovering at the same mark.  For now she has been placed back on several of her medications.  It was a very long day and the bone marrow biopsy was quite an ordeal.  We were asked to arrive at 8:30am, but the procedure did not start until almost 1pm.  I was unhappy about the lapse in time because Mireya had not eaten anything since the previous night and could not eat or drink anything until the conclusion of the procedure.  So most of that time was spent waiting and creatively finding ways around Mireya's request for food.

It has been a long time since we've been in the Fishbowl.  We started out in the Fishbowl for counts and 'the cream'.  I say it that way because in the past I've seen the Nurses ask specific children if they wanted 'the cream' prior to their labs being drawn.  'The cream' is basically a small piece of gauze slathered with a numbing solution which is then taped to the area that will be saying 'hello to my little friend the needle.'  It immediately clicked that 'the cream' is offered to kids with ports (which is beneath the skin), prior to their ports being accessed. Mireya has the double lumen hickman, so we never had to received 'the cream' until now to help numb her hip. 

I can't imagine how a numbing cream applied at 9am lasted or made a difference at 1pm, but I'm happy that Mireya was anesthetized for the procedure.  By the time Anesthesia arrived, got set up and the Medical team and Chaplain was assembled, we were about seven strong physically in the room.  Mireya was out in less than a minute.  I watched them begin to pull out all the instruments to perform an aspiration of the marrow as well as the removal of a bone chip.  All I could do was close my eyes, bow my head and pray.  I was about a minute into my prayer when the Chaplain whispered in my ear that he wanted to take a moment to pray with me.  We sat in agreement and silently asked the Lord to oversee everything going on in the room.  At that point the 8th was in the space and I was able to let go of my uneasiness.

When Mireya had a bone marrow biopsy done close to a year ago, we were asked to leave and come back in about an hour.  I didn't understand it then, but I do now.  I glanced over as they were trying to get the bone chip and it looked like they were attempting to saw down a tree.  I'm the type of person that 'feels' things even if/when they are not happening to me.  It was as if they were drilling down into my hip.  I just wanted it to be over.  Most of you know that Mireya barely has a hip bone and it just pained me to watch them going for it with such intensity.  It took two attempts by two different physicians to get the sample.  Somewhere through all that grinding, someone attempted to lighten the mood by otherwise engaging our minds and we started talking about Sweet Frog.  I did not realize Sweet Frog is a Christian business and FROG stands for Fully Relying on God.   Who knew?  I had not heard this before, but that's awesome. We've visited Sweet Frog quite a few times over the last few weeks.  I've been having a lot of Fully Relying on God moments.  Sweet Frog has been a treat, a reward, and a anything else we could categorize it as (anything but a stressful eating indulgence).  All bets were in that Mireya definitely deserved a trip to Sweet Frog after enduring this procedure and so did Mommy for having to witness it!

The team finally completed the biopsy close to 2pm. We were allowed to leave once Mireya woke up and bounced back.  Within about 15 minutes, she opened her eyes, yawned and stretched as if nothing had happened.  It was apparent that her hip was very sore as she continuously reached for it.  A few rotations of Tylenol really helped to ease the pain.

So for now we wait..did I mention waiting is over-rated.  As the saying goes, good things come to those that wait, but the bible encourages us in Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.  Continuing to put all my faith and trust in the Lord for my strength and to see us through victoriously.

He Lives

As I drove by, I totally got it, but I had to drive back and get out.  Tears streamed down my face as the gentlemen (guards) proclaimed this is 'all for his glory'.  Trust me the guards were not proclaiming his glory on that night, but we know the story well, He is no longer in the tomb, He is Alive and Risen.

The 'visual' encouraged me.  This has been a long week.  This showed me that 'late in the midnight hour' God is going to turn things around and what it looks like, is not what it is.   We serve a Risen Savior who paid the ultimate price for our salvation and as Elder Jackie Bruce ministered last week at Bible Study, 'health and provision' are a part of the covenant.  We know that Mireya's health cannot dwell in this space long and despite it all the enemy cannot have my joy, my peace, or deter my belief or faith.

Thank you to Good News Free Will Baptist Church.  If you're in the area you definitely should ride by and take this in.  Thank you Lord for allowing me to travel this road, at this hour, to witness such a powerful depiction of the ultimate sacrifice.  It truly blessed me!

Highs and Lows

We've spent the last few days in and out of clinic to determine why Mireya's platelets have taken a nose dive and she has started having petechiae and bruising on her body....a moment of silence and deep breaths are needed here because seeing this hit us like a ton of bricks.  We had not imagined after what has been deemed a successful bone marrow transplant, that we would see the signs that started us on this journey eleven months ago.

This is also puzzling to our medical team. The best we can imagine is a virus of some sort is destroying her platelets.  Mireya's platelet count has declined over the last few visits, but have remained in a healthy range.  At one point they were 375k and they are now 50k.  50k is better than the 15k and lower that required the continual platelet transfusions, but platelets can be depleted quickly and we're uncertain of when this steadier decline began. Counts have been checked, tests have been initiated and Reya will have to undergo a bone marrow biopsy (for which she will be anesthesized) next week.  The bone marrow biopsy will be done to evaluate the bone marrow function.  It will also evaluate the effectiveness of her meds and assist in determining the reason behind the low platelet count.

Chimerism testing (engraftment analysis) is also being conducted. This test involves identifying the cellular make up of Reya's system.  This is a very significant test that essentially will show boy, girl or a mix of both. Our prayer is boy will be prevalent which would be target since Jalen was the donor. Girl would indicate Mireya's cells are wrecking shop on the success of the transplant.  A mix of boy and girl would be acceptable and can exist successfully as long as there is a higher percentage of boy.  There are a few ways to look at it medically, but the answers will come after the results of all these test are compiled and we know exactly what is going on.  A full reconstitution of the immune system following a transplant can take up to 19 months.  We are over halfway there.  For now, Mireya has been placed back on several of her medications.  We're unsure if she actually needs them, but the team would rather have them in place to support her system as opposed to waiting until next week and determining we've wasted several days by not doing so sooner.

I'm a pretty patient person, but waiting for test results challenges my patience and resolve.  On the plus side projects have been moved along, things have been organized/reorganized and my house is super clean.  Anyone else move into 'git r done' mode while feeling helpless as you wait?  You have to do something with those emotions and thoughts that try to consume you.  May as well be productive and exhaust yourself in the process.  The Drs. mentioned a plus we have on our side is 'we still have Jalen'.  We know of several instances where sibling donor transplants have failed, but it is usually identified soon after the transplant.  Jalen is a perfect donor match for his sister should we have to go that route.  Despite having gone through it already and knowing all the variables, we DO NOT want Jalen, Mireya or our family to have to go through this part of the process again.

God is STILL working this out. We've been shaken, but remain grounded in our faith. I don't believe we've come this far (by faith) and with such success for this to fall apart. There is power in prayer and we thank you for your positive thoughts and prayers as we wait and continue to trust the Lord.

God is Sovereign and is faithful to complete every good work he has started. Philippians 1:6

Glory Glory

We were in clinic today and Mireya was taken off of all medications.  In my best Fred Hammond voice I shout 'Glory, to Glory, to Glory to God'.  This is such a triumphant moment. Her white count had an incredible high a few weeks ago as we tapered her off the Tacrolimus.  It has since dipped considerably lower, but still remains within reach of a low norm.  Overall, her counts are favorable and not of major concern because she is doing so well.  We are looking forward to getting out of this season of colds, viruses and bugs, so we are still very mindful of what and where we do things, but today was a huge milestone.  We've been upgraded to a monthly clinic visit and that is super exciting.  I must admit as my daily medicine reminders went off it felt odd, yet awesome to 'dismiss' them and then promptly delete them.  God answers prayers!!!

Mireya's health continues to increase and we are optimistic and prayerful that it will continue to do so.   Next on the agenda is removing the Hickman Line.  The plan is to give her body a few months to adjust and stabilize, particularly the white count and we'll schedule the procedure to have the line removed. Thank you for your prayers and thank you Lord for touching and healing Mireya's body.

We continue to pray and trust God for our friends and children everywhere battling illness, enduring treatment and incredible odds.  Precious lives are hanging in the balance.  It is impossible to predict how things will turn out or to have someone tell you based on their experience or opinion (medically or otherwise) what the outcome will be....keep fighting, keep trusting, keep believing and know there is power in prayer. 

Princess Reya Sharing Love

Mireya had her first 'appearance' as a Miss Chesterfield Princess.  The girls spent the afternoon at the Brandermill Wood's Retirement home spreading love and handmade Valentines with the residents of Memory Care.  Most of the patients on this floor, suffer from Alzheimers and Dementia.  They were super excited to see the girls and receive the cards.  It was very rewarding to make the time to fill their day with happiness.


It is so important that we make time to give back to the community.  It's so easy to take for granted the time we have with others and fail to realize having this kind of interaction for many, is priceless.  The smiles on their faces and the warmth in there exchanges was so fulfilling.  We can't wait to do something like this again.

Bald & Beautiful

A few weeks ago a 'super' movement was created when several Moms of kids with cancer came up with the idea of the 'Bald & Beautiful' or 'Hope' Barbie. http://www.facebook.com/BeautifulandBaldBarbie   When I first received the notice to 'Like' this page, there were about 1700 followers, it has now grown to over 130,000 in about 4 weeks.  The power of social media is incredible.  If you really know how to capitalize on the power of people through these streams you could be dangerous, or quite a force to be reckoned with as we seen over the last few days when the Public Relations Director of the American Cancer Society decided to share his sentiments in a blog on The ACS site.  The post has since been taken down but it suggested that childhood cancer is 'exceedingly rare' and stated in opinion, this may be a publicity stunt, as he also made a mockery of yet another cancer 'token'.  You can imagine the backlash from such an ill thought out statement affiliated with an organization such as ACS.  I'm thinking his days there are probably numbered or his job in that capacity will be reassessed.  There's also the idiotic self-professed comedian that did a very thoughtless and offensive take on the Cancer Awareness Doll.  She now wonders why she's receiving hate mail and threats.  I do not condone violence, but I think making fun of sick children to illicit laughter is stupid, and when you took the time to make that disgusting video you opened yourself up to more than simple scrutiny. 

The idea of the Barbie hit the scene back in mid-December.  Mattel, St. Judes, and Hasbro were contacted about making a Barbie with no hair so that every little girl fighting cancer or illness associated with hair loss feels beautiful.  The even grander idea was that proceeds would be donated to organizations that support families, research and treatment of pediatric cancer and other illnesses in likeness.  Pediatric Cancer is the number one killer of children.  Statistically 7 children die and 46 children are diagnosed with cancer daily....hardly 'rare' and unless you've been there, walked in the shoes of the many that have and are, those are not statements or the stance to take out loud. 

Mattel has presented one of these dolls to a little girl as a part of a wish granted by the 'Make A Wish Foundation'.  So we know it can be done.  I would love to see the creation and availability of this doll in the near future.  I understand not every little girl plays with Barbie dolls or is affected by this situation, but the awareness it generates is noteworthy.  There are so many girls dealing with treatment that involves chemotherapy or illnesses such as Alopecia or Trichotillomania that want to feel like they belong and are included.   How awesome would it be to have a doll that looks like you or that you can relate to? Perhaps she would have some really cool knit hats, scarves or wigs?  I mean we know that in Barbie's World, accessories are a must!

There are two sides to every story and movement.  Some will be for it and some will not, largely because they have not been personally affected, or lack an appreciation for the difference this could make. When Mireya lost her hair, it was definitely a big change.  Mireya and I had a deal that if she lost her hair as a result of chemotherapy, Mommy would also cut hers, so she was not alone, but we really didn't put a lot of emphasis on it.  It's hair it will grow back and you are beautiful regardless.  The flip side of that is out in public we encountered stares, finger pointing, straight up questions (mostly from kids) and she was mistaken for and called a little boy on at least two occasions that I can recall.  These were uncomfortable instances, but you keep it light and moving.  I realize that kids are curious especially with things they've not seen or been exposed to.  Even if a child is not inclined to purchase the Hope Barbie, perhaps just seeing it as they walk down the aisle in a store could initiate conversation within a household about hair loss and illness in kids.

A great example of this is, my children have been around and spent time with a loved one in a wheelchair.  To them a wheelchair is just 'regular'.  When they are out in public, it's completely normal to see someone in a wheelchair and have an exchange with them just as if they were walking on two feet.  I've seen children who may not have been exposed to someone with different physical needs or limitations or they don't understand 'how' or 'why' someone could be confined to a wheelchair and are in the 'OMGoodness Zone' when encountering a similar situation. I love that the children can relate to this and do not find it odd.  There was another instance when we were greeted by a gentleman in a wheelchair and they wanted to jump in his lap, but that is the comfort level and sense of ease they have with it.  The first time we saw someone with only one leg in a wheelchair required some additional discussions.  You can't sweep away a child's simple and authentic reaction, but you can try to bring awareness.  There were many times I'd wished Mireya didn't have to experience the stares or alarming attention in public.  If I'm not mistaken there is a Barbie in a wheelchair.  I mean Barbie can be all things, why not Bald and Beautiful. I showed Mireya this picture Paris sent me last month of all her favorite Disney Princesses.  She giggled uncontrollably and said 'they got their hair cut, just like me'. In that moment, she identified with a place she has been and it was so cool to her to see this picture of the Princesses she adores.  They were still beautiful and identifiable without their long tresses.

One of our very favorite friends is Little Ms. Emily Hubbel, she and Mireya met on the Bone Marrow Transplant Unit.  Emily was diagnosed with Neuroblastoma one year ago.  She and her family just returned to Richmond from CHOP (Children's Hospital of Philadelphia) where they continue to seek the best level of care, programs and medical specialists for Emily. The Hubble family was interviewed this week about the Hope Barbie.  Take a look at the piece and please continue to keep Emily and her family in your prayers. 

Mattel is weighing the positives, negatives and marketing of a 'Bald & Beautiful' Barbie.  The decision to make the doll has yet to be determined.  Until a decision is made, we have the right to participate in the campaign to request it.  In turn, they also have a right to say no, but my hope is that they will decide to create this Barbie Doll.  It is a doll, but it represents so much more.  A doll that could make it easier to accept the reality of hair loss, a doll that could make a child feel better, happier and more beautiful.  A doll that could make a daughter not feel so bad about her mother's (or any close female family member) illness.  There are so many positives...and yes little boys have not been forgotten.  There has been a push mounting over the last few weeks for a bald GI Joe.  If you are in favor of Mattel making this doll and for the positive impact this could make for so many, please consider signing the petition by visiting change.org

A Familiar Place Leads Back to Grace

I could tell that Mireya was not feeling her best today, she sounded stuffy and had a bit of a runny nose.  Overnight she got up, because she was hot, and jumped in the bed with us.  She felt a bit warm, but her temperature was normal.  Today she's been a bit out of sorts and very fatigued.  It is not uncommon for her to take a nap, but today she stayed in the bed for several hours and when she woke up she complained that her throat and head were both hurting.  I took her temperature and she had a low grade fever.  I know how these things can shift on a dime and it's normally on a Friday about five minutes before the office is closing for the weekend, so I decided to call the pediatrician's office to have her seen.  Typically I also call Hemoc to keep them abreast of any concerns or issues with Mireya's health, and they have been working together to ensure Mireya's care is well managed between both offices. After speaking with the medical team at Hemo Clinic, we were asked to take Mireya to the Emergency Room.  The biggest concern was that she had just come off of an antibiotic days ago and really should not be exhibiting signs of an infection.  Her fever was just below the threshold of 100.4, but they wanted to take labs and ensure we were not dealing with any issues associated with her line.

We've not been down to the VCU E/R since just before Mireya's transplant and as a result we were there for about 24 days.  I told Mireya we were going to the hospital's Emergency Room and in that moment, she very calmly told me I needed to pack her some pajamas and make sure I had an outfit for her in the morning. She also asked me what room she was going to live in.  I laughed to myself because she easily went back to our 'routine', but it also made me a bit sad that the 'routine' was so engrained in her mind.  I didn't think we needed to be concerned about an overnight stay, but I pulled together out hosptial bag anyway.  We used to keep that thing packed, so we could just add a few essentials and hit the road when instructed.  It seemed like everyone had a 'moment' of reliving the impact of Reya's illness over this last year.  Jalen was concerned for his sister and curious as to when she would be back.  Tears filled Makinley's eyes as she asked me not to leave her. We are at VCU Children's Hospital in clinic, several times a month, but this ride felt different.  I started to have feelings of anxiety thinking back to the many times we made this trek and all the nights we stayed there waiting and wondering.   Each time we arrived  we were admitted, but I knew this time would be different.  She probably had a cold or virus and once they saw her we'd be examined and on our way home.

When we arrived it looked like there was a convention for sick children going on. I'd never seen so many people there. Fortunately they were expecting us so we were taken back to a room as soon as we arrived.  The intake coordinator told me whatever you do, don't take that mask off of her. Tis the season.  It's that time of year that breeds, coughs, colds and infections that can very easily become 'more than you bargained for' madness.   We did all the preliminary tests, cultures, checks and balances.  I had given Mireya Tylenol before we left, so she was no longer registering a temperature.  Negative for strep, no fever, counts look consistent to where they were when we were last in clinic.  I had not heard Mireya cough in over a week.  When the Dr. asked about a cough the answer was no, but within minutes of us being there, out of nowhere she begins with a pretty rough sounding cough.  A chest x-ray was ordered and it showed a pretty significant lung infection.  What I heard was 'infection in her line' and I was immediately devastated.  I'm the one that primarily does her dressing changes and line care.  I was so upset that somehow a infection was introduced through her line.  It is not uncommon that a infection can occur in the line, but we've avoided any issues for over 9 months now.  Roll back the tape...oh you said 'infection in her lung' ok I can now lay aside my guilt, but what does this mean?  It meant we would likely be admitted to the hospital so Mireya could be treated with antibiotics via her line and be monitored for progress.  We had been there for several hours before Mireya asked to put on her pajamas.  The attending physician did his assessment and expressed surprise that Mireya was not more visibly ill or on edge based on how the x-ray looked.  They administered the first dose of her antibiotic and within minutes she starting hollering that she was itching.  We'd had this experience while on the Transplant Unit.  They quickly gave her a dose of Benadryl intravenously and within about 10 minutes she was resting peacefully.  Through the night, Quentin and I did the 'wonder #TeamBolton powers activate' switchroo.  Jalen and Makinley were super excited to see Mommy at home the next morning. 

Mireya was moved up to the 7th floor for treatment.  Once they realized she was post transplant, they were a few order changes to ensure she was not on the Main Floor with so many sick little ones and that she was not sharing a room or bathroom.  A few of the Nurses and Care Partners remembered Mireya's sweet face.  They had to connect the diagnosis and chemotherapy dots when didn't see all that hair I was usually brushing or pulling back, but were happy to know that she had been doing well overall since we were last there.  Child Life stopped by, remembering that Mireya loved everything princess, they brought her a doll and some awesome activities to do while she was there.  I heart the Child Life Center.  They bring smiles to the faces of so many children whether they are there for the short or longer term.  During rounds we discussed plans with the Hemoc team for Mireya.  She has been placed on a super nuclear antibiotic and if there was no fever within 24 hours she could be discharged.  The fever never resurfaced, but I thank the Lord for that slight elevation in temperature because overall, that was the indicator of the underlying issue. One of the greatest exchanges during that conversation was that Mireya is cured!!!  There is no evidence of Aplastic Anemia and at this point she is simply being treated as a transplant patient.  Glory to Glory to Glory to God.  We'll continue the course of care for the next five months at which time we should be released from care and only have to come back annually to complete bloodwork and counts. 

 

The Nurses remarked on how awesome and easy Mireya is as a patient.  We've heard this many times before and we've said it before, God knew which child had the strength to bear this.  Despite the circumstances and not feeling her best some days, she's still manages to be a joy.  We found ourselves back in a familiar situation, but you can't keep a Warrior Princess down and you can't keep a family prayed for my many, solely relying on the will of God down either.  God's love and grace continues to keep us.  The prayers of the righteous are powerful and effective.  Thank you for your continued thoughts and prayers.

When you Wish Upon a Star

The Make A Wish team came by to meet Princess Reya and begin the process of designing a wish consisting of who? what? where? and when!  That line of questioning took us straight down a path to Disney World to meet none other than Princess Aurora, Mireya's favorite princess.  The volunteer team arrived with a special 'Make A Wish' Barbie doll for Mireya.  She was so excited about this beautiful new barbie to add to her collection.  The kids were on 'all energy' for the entire interview.  You'd think we'd not been out the house much or had very minimal interaction with people. Hmm...sounds familiar?  There were tons of questions to answer.  Mireya's second wish choice was a family beach trip.  We weren't able to take our planned beach vacation this year and Mireya told me repeatedly in the hospital how she wanted to go to the beach.  Can I interject and make that a international beach trip to Turks and Caicos?  I know I continue to digress, so back to making a dream come true for Mireya.

Disney is apparently one of the most popular wishes amongst the little ones.  I've never been but have several friends that have done Disney many times and love it. We had plans to do Disney this past Spring Break, the week of Mireya's birthday, but ended up changing those plans because of a conflict.  We thought about when we could possibly do it again, but hadn't revisited it.  We were in Orlando back when Paris was about eight years old and decided to do Universal Studios and Adventure Island instead of Disney.  Nickelodeon was really big then.  Somehow we were selected for one of those Nickelodeon game show segments and I also got picked out of the audience for an Animal Planet piece that concluded with me and another woman holding an albino burmese python.  I wanted to pass out, but we had a lot of fun at both parks.

Disney would be a first for all of us. Mireya's loves the Disney Princesses, but it wasn't until after she had her transplant that she realized there was actually a place call Disney World.  We'd never mentioned the impending trip to the kids, in the event we didn't go, but if you recall, I used going out of the room to look up all things Aurora as a privilege for getting out of the bed and walking around.  In the beginning we found a lot of animated videos and songs, but one day Mireya saw a little girl meeting Princess Aurora while at Disney World and she was hooked on the notion you could actually go somewhere and meet Princess Aurora.  It will be a treat when she realizes Princess A hangs with a crew of girls namely, Cinderella, Snow While, Tiana, Belle, Ariel and Jasmine.

We're not sure when her medical team will allow for such a journey, but it will be something really awesome to look forward to.  The volunteers left, but the smile on Mireya's face remained well into the next morning when she told me how happy she was to meet Ms. Tammy and Ms. Kim and receive her special wish Barbie.  She continued to tell me all throughout the day how happy she was to receive her wish.  She believes the 'Make A Wish' barbie doll was her wish.  She will be so surprised when the time comes to actually go to Disney and meet the princesses.  I'm super happy for Mireya. What an amazing blessing it is to have something so special planned just for her.

Over the years I've made pledges and donations to the 'Make A Wish Foundation'.  To date over 212,000 wishes have been granted and every 40 minutes a new wish is granted. That is truly amazing!!  I never imagined I would be on the receiving end of a wish come true, but I'm thankful for an organization whose mission is to give hope, strength and joy to a child suffering through or recovering from a life threatening illness.  Thank you Make A Wish Foundation!

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.