Wednesday, November 28, 2012

Another 100 Days

Praise the Lord....we've reached another major milestone, our second 100 days!!  We've been on edge for the last week or so because Mireya's had the sniffles and a scant cough, but we were happy to see good counts at our last appointment.  Day 100 is significant in ruling out the probability of several issues that could sideline our progress and continued success. As a result, we've been able to eliminate a few more medications, and Mireya can stop wearing a mask, unless in a heavily populated area.  It's cold and yuck season, so we'll definitely use wisdom in all situations.  Wearing a mask has been a sticking point with Mireya, so it's good to be a little less restricted when out.

The frequency of our appointments will also change.  Being in the clinic less throughout the week, will be nice, but having our appointments more stretched out as we dial back Reya's Tacrolimus has us on high alert.  The process of reducing her tac meds earlier this year is when we began to see a decline in her counts and failure of her graft.  Thankfully we are on our third week of the weaning her Tac and her counts are holding relatively steady.  Continue to pray with and for us, specifically against illness and zero issues as she comes of the Tacrolimus.  100 days down and several more months to go.  Each day moves us closer to victory over this illness.

Phillipians 4:4 Rejoice in the Lord always, again I say Rejoice.

Deuteronomy 20:4 For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory.  

Thursday, November 22, 2012

In the News (Love & Kindness)

#TeamBolton was honored last year by a dear friend and NBC12's 'Acts of Kindness'.  Recently we spent time with Sabrina Squire (Local NBC12 Anchorwoman) to discuss all that has transpired since the original piece was aired.  We are thankful for the opportunity to share our story, along with how the love, support and kindness of so many has impacted our lives throughout this journey. 

To view the follow-up piece, please click here

#TeamBolton has so much to be thankful for! We take each day as it comes, always reminded of the Lord's love for us.  We focus more on our faith in God to see us through as opposed to the obstacles and situation.  We're encouraged and continually lifted by the prayers and love we receive daily from others.  Love and blessings to each of you this holiday. 

Thursday, November 15, 2012

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.

Tuesday, November 13, 2012

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. (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:

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 or  Thank you so much for helping to make this happen and please share with others.  

Sunday, November 11, 2012

Not Forgotten

It's so easy to slip off the scene when so much is going on in life...your life and the lives of everyone around you.  Sometimes you feel like your hovering just above the breaking point.  That thread is unraveling, the nerve is giving in, that last brown blade of grass in your yard has you wishing for the green you see in the yard across the fence.  Of course we know the grass is not always greener on the other side, because everything that looks good is not always good.  I've found it's okay to have these moments, the feelings and emotions are real, but we must choose not to hang out in that space, because defeat and depression dwell there. 

Every day we are moving closer to beating this.  There are low points.  There are times you acknowledge your tired, but you keep hanging on and pressing forward.  I recently saw a marquee that stated 'God gives his greatest battles to his strongest soldiers'.  'I' am weak and 'He' is strong.  Every bit of the strength I/We have is because of the Lord.  He knows exactly what we can take, bear and handle.

Times goes by so quickly, it's hard to imagine we've been on this path of our lives for over 19 months. We are still very much fighting and walking out the days and our reality until we reach total and complete wellness.  We have to keep our eye on the prize, because we know on the other side of this is joy and victory.  Israel Houghton and New Breed have a beautiful medley 'Not Forgotten/He Knows My Name' that is so fitting.  As I'm typing this, ironically I'm reminded that 'He Knows My Name' is a song Quentin lead in worship many times. The song says 'God knows my name, he knows my every thought, he sees each tear that falls and hears me when I call'.  The Lord will never leave or forsake us.  He has equipped us to walk this out despite it all.  Pray for and with us.  It's not easy, but it's worth it.
Keep my sweet girl in your prayers too
 Psalms 31:24 Be strong and take heart, all you who hope in the LORD. 

Thursday, November 1, 2012

Higher Higher

Over the last few weeks, Reya has been putting out the best counts we've seen in over a year!  We're still remaining very watchful over delicate skin issues, but overall Mireya is tracking well. She had her first pentamadine treatment since the summer today.  She was not thrilled, but she managed to get through it quickly.  It was a long and tedious day in clinic, but we're thrilled to have such a positive response happening.  Chimerism testing shows a slight decrease in Mireya's cells count, which is very favorable.  We trust that everything we've been standing on to for over 18 months will continue to come to pass.  Healing and victory over Aplastic Anemia!

I can't believe the first nine weeks of school is almost over.  Jalen is making it happen and we're so happy about Mireya's Homebound instruction.  It's really wonderful for her to have this time daily to focus on learning.  Some days she's for it, other days she's less cooperative, but she is doing extremely well.  

Isolation continues to be a struggle. The children don't always understand why certain things are not an option for us right now, but we do our best to keep them engaged and keep it moving.  Isolation won't last forever (even if it feels like it) and brighter days without restrictions are definitely in our future.  Can hardly wait......thank you for continuing to pray for and with us.