Champion Fun

The last few months have been full of Champion activities.  I've had the joy of speaking on behalf of children's medical issues and funding with the Jr. Board of the Children's Hospital Foundation, the YMCA Board and the Miss America Organization.  It is always a pleasure to add the real life experience and challenges to the WHY of the overall goal.

It has been awesome to spend time with the Partners who have been working over the last few months to raise awareness in the community and helping raise money for Children's Hospital of Richmond @ VCU and Children's Miracle Network.  I feel like a Mom-mager coordinating schedules and balancing some great events for #TeamBolton.  Some of the fun has included a half-time check presentation from Virginia Credit Union at the last home game for the VCU Rams.  We enjoyed meeting the President of the Credit Union and his wife to thank them personally for their generosity.  The kids loved seeing themselves up on the jumbo-tron and the super fan even made the shot and our section was chosen to receive free pizza...which was totally winning!!!

#TeamBolton was a part of the check presentation for Wheel of Fortune's Secret Santa sweepstakes, in which a local winner's charity of choice was Children's Hosptial of Richmond @ VCU for $10k.

The students at Meadowbrook High School did a phenomenal job with their Roar-athon event this year.  We continue to be in awe of what a committed group of young people with hearts to serve others looks like.  You can't go wrong with music, festivities and a goal.  #TeamBolton loves a dance party, so this will continue to be a favorite of ours for years to come.

Crowns and hearts go together so beautifully.  We enjoyed meeting many of the local and statewide pageant titleholders to share our story, along with our appreciation on behalf of our family and patient families for all these lovely ladies do throughout their reign to benefit Children's Miracle network.  This is one of Mireya's favorite events....as she loves a sparkly crown!

Jalen and Mireya are the Champion kids for the Walmart, Sam's Club, Costco and Chico's stores in our area.  It is always great to get out and visit with the employees.  The employees in one store are wearing aquamarine ribbons (Mireya's favorite color) along with the Champion photo on their name badges.  The others have photos on the registers and bulletin boards.  We love all the texts and photo messages we receive from our friends and family when they visit these locations during this campaign. It will be exciting in the next few weeks to see how much they have raised through donations, raffles, cookouts, carnivals and store events.  Throwing pies in the Store Manager's faces during the carnival was really cool! It makes my heart smile to see how everyone comes together collectively for a period of time to make a difference.

We will have the opportunity to travel to Atlanta, then D.C. for the kick-off of the official Ambassador's Tour.  This will be an amazing time to meet the other 49 families and children as well as speak to lawmakers on behalf of patient families and participate in some fun activities.  I'm certain there will be a lot of stories and pictures to share, but also unforgettable memories.

Sometimes it is so hard to see beyond the immediate devastation of a situation.  Never would we have imagined what the Lord had on the other side of what has been one of the most difficult times in our lives as a family.  We are so proud of our children and see it as an honor to serve alongside them in their roles!!!

Procedures & Plans

Our family enjoyed a wonderful time together yesterday on Christmas day.  Today were down at Children's Hospital to complete some procedural testing to help us pinpoint the cause of some of the challenges Reya has been having over the last few months.  We expected to have an IV placed and scans done with and without contrast.  I wasn't certain how long it would last, so I packed up the bag with fun things to help pass the time and a bag of treats to have at the conclusion of the testing since Reya was not able to eat anything since last night. We reported to Radiology and after a considerable wait, there was a change in plans....no IV, no contrast needed.  With those two elements eliminated, we were done relatively quickly.

We are still in our maintenance phase of treatment and are routinely seen in an auxilliary Children's Hospital clinic in the West End. Since we were at the Main Hospital, we decided to take a trip down to our old stomping ground for a quick visit.  It is such a joy to see the smiling faces of people who were such a big part of the process and journey. The entire clinic experience starts with these two ladies and I truly love them both so much!!!  Reya was super happy to see Ms. Rachel and Ms. Roz. It was like catching up with family and friends.

 The girls attended the Clinic Preschool with this beautiful trooper. We are thrilled to hear all the great news happening in the midst of her 2nd battle.  God is so amazing! Continuing to pray and thank the Lord for continued progress and victory in her fight.

 As we were leaving the hospital we saw several familiar faces and ran into the Dietary Technician that cared for us while on the Bone Marrow unit.  She used to bring the latest movies to the room for Mireya and the children to watch.  She took great care of us and always knew how to put a smile on Reya's face.  It was such a blessing to us and I love that our paths connected again.

We have few additional appointments in the coming weeks to help us assess and determine a plan of action to manage these issues.  We are continuing to enjoy the 'new normal', but look forward to 2015 being a year that propels #TeamBolton to even greater places.

Miracles & Blizzards

We had an awesome time at Dairy Queen today helping raise money at their largest fundraising event of the year, Miracle Treat Day.  Dairy Queen donated $1 or more for every Blizzard sold at select locations today.  Thank you to all the friends and family that came by to support #TeamBolton and Children's Hospital of Richmond.  It's always amazing and touching to see the community come together to support an event that has made a difference in our lives personally and the lives of so many others. We appreciate you sharing this event with your co-workers and for spending time with us.  A special 'thank you' to Miss Chesterfield (and the Miss Chesterfield Organization), Kiara Williams & her Princesses for your community service and helping to make the event fun and glamorous!

Summer Fun on a Mission

#TeamBolton has been having a great summer.  Days have been filled with friends, fun and enjoying things we've not had the chance to do for so long. Many priceless moments and times of reflection of just how far the Lord has carried and brought us.  One of the most touching parts is the 'thankfulness' Mireya has.  Many times she has grabbed my hand and said 'thank you' for taking me there, or 'thank you' for letting me do this (tear).

We were asked earlier this year to be a part of a feature story for the Children's Hospital of Richmond (CHOR). The  magazine is currently in circulation for the summer at a variety of places around town.  They did an excellent job outlining the journey with vantage points from both a personal and medical perspective. So thankful to have a Children's Hospital right here in town with Doctors, Nurses, medical staff and resources that we could count on to facilitate and oversee Mireya's care.

Magazine Cover

#TeamBolton Feature

Promo Flyer for Families with Heart Program

Our family also had the opportunity along with Miss Chesterfield to quench thirst and raise money for the Children's Miracle Network and Anthem's Annual LemonAid Fundraiser.  There were lemonade stands up all over town to help put the 'squeeze' on childhood cancer and benefit our local Children's Hospital.  Sometimes it's hard to envision the difference you make when donating a dollar or two, but its amazing what can be accomplished collectively.  Thank you to the many that were out and about that donated to this cause and those who stopped by to visit with us personally.

Our Hero Jalen

Local Firefighters Supporting the Cause

Miss Chesterfield Kiara her court & Miss Chesterfield Directors

Mireya will be having her one year checkup in about a week.  It's hard to imagine just a year ago we were gearing up for our second transplant and to see where we are today.  God is so faithful and we're so thankful! 

Illness & Revelation

 It's been so beautiful to witness Mireya living and enjoying life.  There are days I'm overcome with emotion at some of the simplest discoveries.

We had the opportunity to hang out with some awesome families from clinic a few weeks ago to attend the Circus.  The kids were looking forward to a special tour that was lined up for the afternoon, a dinner and then back to the Coliseum to enjoy the Circus.

The tour was amazing.  We had the opportunity to spend one on one time with the head Clown in Charge, some of the featured animal acts and enjoy the allure and fabulosity of all things circus.  It was really special to watch Asia, the elephant paint a lovely photo for the Connor's Heroes kids, but even more exciting to watch her gleefully gulp down her favorite treat (a whole loaf of bread).

We walked over to Gibson's Grill to enjoy the lovely fare they had set up for us.  It was so funny to see the kids go for the high chairs (bar stools) at the bar and order an assortment of juices and sodas.  The food was very tasty.  Midway through dinner Mireya was dragging.  She mentioned that her head and stomach were hurting.  I felt her head and she seemed to be fairly warm.  Hmmm...I've been out of the 'on edge over fever' for quite a while, so I did not have my thermometer on hand and surprisingly neither did any of the other Moms.  I became concerned the more I watched her demeanor and activity change, but she absolutely did not want to leave the 'Greatest Show on Earth'.  I decided to contact the First Aid area of the Coliseum to see if I could get here temperature taken. Low and behold a very nice Firefighter arrived within minutes to our location registering a 101.6 fever.  After calling Peds Hemoc, we were instructed to bring Mireya to the Pediatric ER to be looked at and for counts.  We decided to allow Jalen and Kinley to stay with the group and enjoy the show because ER visits are always so long.  Mireya decided she wanted Daddy to stay with her in the ER. So thankful for technology which allowed me to return to the Coliseum, keep track of Mireya's status while Jalen and Makinley enjoyed the remainder of the show.  Long after the Circus was over we were still in the ER making sure Mireya received the care and medications she needed for what appeared to be a viral infection.  The greatest feeling was receiving her counts and seeing that they were right where they needed to be.  Her white count was even elevated a bit, showing us that her bone marrow and body were doing exactly what they should when fighting against illness.  Jalen was quite anxious when we arrived because he thought he was going to have to 'do something' again to help his sister.  After hearing those counts, I looked at Jalen and gave him a 'high five' and a big hug...those SUPER cells are working beautifully.  It was a long late night, we didn't get home until close to 1am.

Through what 'appeared' to be a setback, God showed us beautiful counts, a body on it's job and fighting for wellness.  We're thankful this was something that could be easily addressed and happy for the revelation in the midst of it all.  This is definitely a win for #TeamBolton.

Done & Gone

It's Time

The removal of Mireya's line was successful and without issue.  We arrived bright and early and waited through the course of the scheduled procedures until we were pulled from the queue for our turn.  Reya has been excited for the last day at the prospect of getting this line taken out....but when we got to the floor to check-in, she was incredibly serious and quiet.  I asked her what was wrong and she said she was afraid of getting a shot.  I assured her she would be ok and thankfully they anesthetized her via the line and then placed her IV.   Mireya tolerated the anesthesia without a problem. There was significant scar tissue, which we expected because it's been in for almost two years...but 'thank you Lord' this part of our experience is over.  Bathtime was greeted with sheer excitement.  Even though we still have several days before she can be submerged under water, filling the tub up more than a few inches was a treat!

Waiting our Turn

Sleepy Medicine Worked #sleepingbeauty

Oreos for Breakfast #earlyprocedureperks

I'ts gone!

Sidenote..  My kitchen is a total mess due to a line blowing out under the sink yesterday.  Water damage is a beast.  Half of the kitchen has been completely demolished (the most important side...sink, dishwasher, trash compacter, cabinets and counters)...for now we're toughing it out with take-out, finger foods, frozen meals and most importantly paper and plasticware. The enemy thought he was going to 'steal' every ounce of joy we had in anticipation of this milestone, but sorry I'm still smiling with my joy intact. Thank you for your thoughts, calls, texts and most importantly prayers.

Supporting the Cause - 36 Hours for Kids

 #TeamBolton had an amazing time with Q94's Kash and Lite 98's Kat Simons for the 36 Hours for Kids Radio-thon. Originally I thought the interviews would be simulcast on both stations, but we actually ended up doing two separate interviews. Both a little different, but all to support the Children's Hospital of Richmond (CHOR) and Children's Miracle Network. We loved being able to share our story and encourage listeners to become Miracle Makers.

Mireya's current reign as a Miss Chesterfield Princess will soon be over, due to health challenges she's had to miss a number of events with her pageant sisters.  It was really fun to don the crown/sash and make the appearance official.  Thank you for all the calls, texts, emails and posts.  We appreciate you tuning in and supporting us and this event.  The Radio-thon will be going on until Sunday.  Be sure to tune in and hear all the wonderful ways CHOR and CMN are making a difference in the lives of children and families daily.

We promised the girls a train ride once we were done.

In case you missed todays interview, #TeamBolton will also be LIVE on-air next week for the Make-A-Wish Foundation's Radio-thon on 103.7 (The River) and Hot 100.9.  Can't wait to share our heart and love for MAW....making dreams and wishes come true for children all over the world.  Truly amazing!

Sick and Shut-Out

Madness has attempted to infiltrate the camp.  At this point, we don't have time for illness or o-sis (as in diagnosis) in the #TeamBolton household.  Any type of illness would be very damaging to the progress Mireya's body is making. These last few weeks have been filled with doctor visits, labs, shots and several follow-ups for a few members of #TeamBolton.  As a result, it has been suggested that those of us on the wrong side of wellness be removed from the house until we are better to keep Mireya from getting sick (a serious request). That is a very tall order and not our reality, so we've done the best we can to keep her healthy and get everyone else well. OCD on handwashing, extensive Lysol spraying, mask wearing and keeping the kids separated. The last task is hard to manage because the children love being together.  

We've had good weeks and better weeks, this week was acceptable. Mireya's counts have taken a few dips over the last week or so.  Her Medical team scheduled her to have a bone marrow biopsy because they were concerned about the drop in counts.  We received the call late on a Thursday and were scheduled for the procedure on that following Monday.  I prayed and asked the Lord to please work it out in the allotted 4 days, because I did not want Mireya to have to be put to sleep to have another bone chip removed from her hip (she barely has hips).

Having a biopsy done at this point was questionable for us (not to mention not wanting to sit through it again).  Don't get me wrong, we will do what is necessary to ensure we're on top of her care, but having 19+ months of experience with the ups and downs of counts will cause you to interject when your not totally in agreement with what is being proposed.  We looked at where we are now as opposed to where we were this time in the process last year.  We considered the trending of counts and what her body' is' actually doing on it's own. We appreciate everyone being extra cautious to ensure no ball is dropped and no avenue overlooked, but it seemed to us, considering all things, that the biopsy was not needed. A great encouragement is seeing her body make platelets.  Remembering those days when we had less than 5K and to see them thriving and holding in excess of 250k.  God is good!!!

The Head of Pediatric Hematology/Oncology has been doing rounds and out of the clinic rotation for about 5 weeks.  She had not seen Reya since that time, but after reviewing everything, she was of the same impression as the #TeamBolton duo.  She agreed the procedure would not be necessary if we had 'acceptable' counts. On that 4th day, we had acceptable counts (Praise God) and were able to avoid having the biopsy. We continue to believe Mireya's body will respond favorably and align itself with the word and prayers that have and are going forth for total healing and victory.  We have about twelve more months of treatment until Mireya's immune system is totally reconstituted.  That initial call about the biopsy, set us back for a moment, but we settled in our hearts we were not going to 'worry' or 'stress' about it.  We know nothing is too hard for God and he will continue to be with us until the the end. Thank you for continuing to keep us in your prayers.

Emily's On a Mission ~ We All Can Help

Meet our dear, sweet little friend Emily Hubbel.  Many of you may remember previous posts I've shared about Emily and Mireya.  The girls met on the Bone Marrow Unit last summer during their transplants.  Reya and Emily both love princesses, painting nails, and FaceTiming each other.  Being in the clinic all the time is no fun, but on days the girls are there together, illness and treatment are the last thing on their minds. They truly enjoy seeing one another and just hanging out being giggly little 5-year olds.  

Emily and Mireya are true warriors!  Emily was diagnosed in December of 2010 with Neuroblastoma, one of the most aggressive childhood cancers.  Mireya was diagnosed in the Spring of 2011 with Severe Aplastic Anemia, a syndrome of bone marrow failure affecting the creation of new blood cells.  Week in and week out they endure and undergo so much to maintain treatment plans to live and beat their respective diagnosis. 

So often we wish there was something we could do?  We all have the opportunity to do exactly that.  Emily has had so many help her, love her and support her and she wants to give back!  Emily and her family are hosting a Band-Aid drive for the Children's Hospital of Richmond's Pediatric Hemotology/Oncology Department (where Emily and Reya's receive care) and Helen DeVos Children's Hospital in Michigan.  Emily's Oncologist is located at Helen DeVos. 

#TeamBolton is asking everyone to buy a box of Band-Aids (or more) and either send them to the Hubbels or drop them off with me and I'll deliver them all to the Hubbel Family.  If you would like to participate, you can mail your Band-Aid donations to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

If you want to help with Emily's 1st Annual Band-Aid Drive, but you don't live close by and shipping is a concern, SmileMakers was very happy to offer a code, not only for free shipping, but also for 10% of all bandage purchases for this drive.  The code to use at checkout is 'MissEmily'.  This offer will be valid through 12/3/2012. 

http://www.smilemakers.com/Shop (search put Latex Free Bandages)

If you are ordering from SmileMakers or any other company that will not deliver to a PO Box please use the following address:

EMILY HUBBEL
3530 POST OFFICE RD #5383
MIDLOTHIAN, VA 23112-9998

The Hubbels would like to have all the donations in by December 3, 2012 so they may present them to the hospitals when they make their next trips. Here is the info needed for the Band-Aids:  

• any brand is fine

• latex free (since some people are allergic)

• regular sizes needed to cover when children have shots or ports accessed

 If you are interested in reading more about Emily's journey, please visit www.emilyhubbel.com or www.facebook.com/emilysjourney.  Thank you so much for helping to make this happen and please share with others.  

Second Time Around

This weeks appointment was a tough one.  We've been holding out for Mireya's body to make a turn around, but an additional chimerism test and the downward trending of her counts show her graft is failing. We were hoping to avoid a second transplant, but the next step is the DLI (Donor Lymphocyte Infusion) or Boost transplant.  We are exactly 6 days away from what is medically considered Mireya's ''new birthday', when she received her bone marrow transplant last year.  It's a hard pill to swallow because up until a few months ago we were having incredible success. The blessing is we still have our Super Hero, Big Brother Donor Jalen.

Please, please, please pray for Jalen.  He has spent many days questioning if his sister is going to be alright. He is extremely anxious at the thought of having to go through another medical procedure to help Mireya.  The DLI will require more for Jalen than the original transplant.  Jalen has a great disdain for needles.  I don't know many people who aren't disturbed to some degree when having someone insert a needle in their body.  Jalen had a bad medical experience after running into a pole when he was 5.  He ended up needing several stitches about an inch below his eye.  He was afraid and very uncooperative.  He ended up being papoosed (basically wrapped up like a mummy) and restrained by two grown men as they closed up the gash.  He cried, I cried and that experience alone gives him great anxiety in medical settings.  Going to the dentist for a simple checkup has caused him to hyperventilate when just having his teeth counted.  Sedation is going to be key in making this less traumatic for him.  He was sedated prior to the transplant and did exceptionally well.  We're doing our best to help calm his fears.  We'll be working with the Psychology division of the clinic for some positive reinforcement and creative angles to assist us too.  My boy is long and lean, but he is bull strong.  Couple that with anxiety and adrenaline and it won't be cute if we're not able to calm and relax him prior to these events. 
 
Jalen will have to take the same growth hormone (GCSF) as his sister to help build his cell counts in preparation for the boost.  His cells will be accessed via his blood as opposed to his bone marrow.  The team will have to determine when Jalen's cells are at their peak and the procedure for harvesting his cells will take place.  The GCSF and determining the peak time to harvest his cells will be done via injections and by drawing labs...in other words needles.  Harvesting his cells will require a port to be placed in his chest so that his blood can be accessed for several hours as needed.  The goal is to collect about 10 million cells.  Additional cells will be collected and frozen should we need them in the future.  Jalen will  have to be hospitalized for this part of the process.  The port will be removed prayerfully the same day, provided everything goes as planned.

We met with the Transplant Coordinator who was one of the Nurses we had on the Bone Marrow Unit last year.  It was good to see and work with a familiar face as we walked through the preliminary steps of the transplant procedure.  Mireya will receive chemo, but it will not be as extensive as last year.  Our stay on the Bone Marrow Unit will hopefully only be about ten days or so.  We are believing it will not take long for Mireya's body to show success based on its familiarity with Jalen's cells.  We found a similar case of a young lady diagnosed with Severe Aplastic Anemia.  She was taken off her medications about the same time frame as Mireya and had a late graft failure following an otherwise successful transplant.  She received a DLI and it took about 4 weeks to see the success of the transplant.  She has not had any issues since receiving the boost.

There is a greater risk of Graft vs. Host Disease (GVHD) following this type of transplant.  We had no issues with GVHD during our first transplant, and we are truly believing and asking for prayers that we will not have any issues or signs of GVHD this time.  We're praying for a swift engraftment and successful and harmonious results. Mireya will be immune suppressed, so we'll have to deal with another '100 days' and isolation.  The DLI may not be handled as strictly, but it will also not be addressed lackadaisically either. We'll have to take it a day, a week, and a month at a time to see and monitor Mireya's progress.  Mireya has definitely been looking forward to going to school.  This timing will likely affect her ability to do so. The hard rule is no school for one year post transplant.  Children's Hospital has a great home bound program and we'll be working with the Educational Specialist to ensure Mireya is on track as needed.

We've decided to handle Jalen and Mireya's procedures separately.  He will be hospitalized for his procedure where we both can be there to support and love him through it. We didn't have this choice during the bone marrow transplant.  Both had to be done at the same time, so I was not able to be with Jalen as he went through this last year, and Quentin wasn't able to be with Mireya because he had to take Jalen home and care for him. Once the harvesting is complete, Mireya will be hospitalized for the transplant.  We are about two weeks out from starting this process.  Although we've been down this road before and have a pretty good idea of what to expect, there are many variables involved.  Thank you for your prayers, encouragement and support.  It helps to lift our spirits and it fills our hearts with gladness to be covered in prayer and surrounded by so much love.  We are trusting God for victory for our sweet girl and praying for peace and comfort for Jalen in times where he is troubled.  God answers prayers and will continue to show himself mighty through it all.

We're Back

Our appointment this week was disappointing. Reya is on the line for receiving platelets and a blood transfusion.  The decision was made to hold off on any transfusions, largely based on the possibility of needing to repeat the transplant via the boost.  The preference is to limit or avoid giving Mireya any blood products that could cause an issue with the success of a second transplant.

Based on how Mireya's counts have been trending, the boost is our next viable option.  I've been praying to avoid this for both Jalen and Mireya, but we are not seeing the expected increase in her counts as hoped.  It's possible we need to give her body time, but in the grand scheme, we don't have a large window of time to work with.  We cannot allow her to languish here in a cycle of low counts, transfusions and uncertainty.  It's still very baffling to find ourselves back at one after so many months of exceptional success, but we're so thankful to have Jalen, despite how terrified he is of being his sister's donor again.

We received a call this afternoon from our Medical Team to return to the hospital after lab results showed Mireya has tested positive for an infection in her blood.  The infection has been identified as a Staph infection.  Additional test have been conducted to determine if it is MRSA.  Staph and MRSA are both very heavy hitting infections that can be life-threatening.  MRSA specifically is contracted from contact with someone that already has the infection or has cared for someone with the infection.  It is important to identify which infection it is, so a specific antibiotic can be prescribed.  Reya is currently taking a heavy hitting medication that covers a multitude of infections, but MRSA specifically is resistant to multiple antibiotics.  Her counts are also down another notch, but we'll still hold off on transfusions at least for tonight.  Mireya is doing well.  She does not have a fever, which is good.  Her hemoglobin is low, so she doesn't have the same energy she had a few weeks ago, but overall she is doing well.  A weakened immune system trying to fight off major illness is very taxing to the body, so please pray for strength and the ability to quickly recover.

The weeks have not gotten any easier and the highs and lows are absolutely draining. Everyday I pray for strength and wisdom as we oversee Mireya's care. She is our Warrior Princess and we stand alongside her suited up and ready for whatever comes our way.   We serve the ultimate Overseer who we know is able to turn this around in an instant.  The realization of how close we are to repeating this transplant has consumed me, but I've been reminded that victory 'will' come either way...turned around or going through. Keep us lifted as we wait out the testing here at the hospital and as decisions are made in the coming week about the transplant.  Nothing is impossible with or for God and ALL things work together for the good to those that love the Lord.  Loving and continuing to trust him through 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!