Friday, December 21, 2012

Fun Times with Connor's Heroes

 We had a great time with Connor's Heroes at the Winter Wonderland and Holiday Ball event.  Connor's Heroes is one of our favorite organizations that is doing fabulous things in the community and for families of children with cancer and other life threatening illnesses.  Lisa Spickler-Goodwin's family has walked in the shoes of diagnosis, treatment and (thank God) victory over illness.

#TeamBolton has personally benefited from many of their programs.  From decorating Mireya's room on the transplant unit both times (so beautifully) and supplying it with lots of games, activities and princess garb to keep her mind busy throughout her stay there. Their backpack and tote bag program provides families with meals, gas cards, grocery cards, and the backpacks for the kids is filled with an assortment of goodies to help get them through their clinic visits and hospitalizations.  They were thoughtful enough to include a Mommy/Daddy pack for our stay with Mireya.  They visited with us at the hospital and also loved and supported Jalen, our Super Hero Donor Big brother through both of his hospitalizations.

We've enjoyed several family activities sponsored by Connor's Heroes.  We love their SuperHeroes and Sidekicks program.  Each of the children has their own personal Sidekick they are able to spend time with doing a variety of activities.  They all LOVE their sidekicks and spending time with them individually and collectively.  It's such a blessing to have these types of activities we can do together as a family.

In a few months, #TeamBolton will be organizing a drive for Connor's Heroes that I hope you will consider being a part of.  We want to be a blessing to them as they continue to be the blessing to others.  It's the hearts of people coming together to share and show love to others.  Stay tuned for details. 

Fright Night

As if there is not enough excitement in our lives, we had a very frightful experience last night as we watched Paris go through an allergic reaction to a something she ate.  Paris has no known allergies to foods or medicines, but immediately after she consumed a few bites of her meal, she began to complain about her mouth, throat and chest feeling like 'fire' was running through it.  Within minutes she was experiencing discomfort and itchiness all over.  I immediately gave her an allergy medicine because it was apparent she was having a reaction.  Soon after taking the medicine, areas on her face, arms and body were red and covered in splotchy hives.  We tried to apply something topically to the skin to help. It provided zero relief.  At that point her discomfort was peaking and she began to sob.  The allergy meds didn't seem to be providing any relief and in that moment I realized we needed medical attention.  By the time we arrived for care, Paris was having difficulty breathing.  She was very quickly assessed and given a steroid and a shot of epinephrine.  

The EpiPen works quickly to reverse symptoms of anaphylaxis, within minutes the redness in her face and swelling started to subside, and in a total of ten minutes her body had regulated and she was feeling better.   The difference a matter of minutes made. It's hard to determine exactly what caused the issue.  The meal she had consisted mostly of things she has eaten many times before, but as the Doctor stated, your body can build up a sensitivity to almost anything.  'Something you've eaten regularly without issue, could have a totally different affect on you today. The most sensible solution is to obviously avoid that specific meal or food, but she will now have to carry an EpiPen with her at all times.  She also has to complete steroid treatment for the next 10+ days.

It was very frightening to watch this unfold.  I thought about all the the people I know with allergies to foods, medicines and insect stings.  It's amazing how quickly your life is in jeopardy.  I'm so thankful that we were able to go in and get the care we needed to address this very serious issue.  I'm praying that Paris will never have to experience or go through another episode like this, but I'm glad we will be positioned to address it quickly.  

Thank you Lord for your hand of protection....thankful, overwhelmed with gladness, and very grateful.  

Psalm 121:4 Indeed he that watches over Israel (us) will neither slumber nor sleep 

Saturday, December 15, 2012

Post 100 Days

Our appointment this week was very good.  We were really getting antsy about what Mireya's body has been doing since our last appointment.  We were happy to find her counts are holding relatively well.  We're continuing to wean her immunosuppression meds with little incident.  Her magnesium levels were low, but as we wean her off the tac, we've had to lower her dosage of oral and iv magnesium because her mag levels are increasing (as expected).  Mireya's been experiencing some issues with skin irritation around her line, but she's been really good about telling me when her dressing is shot, so I've been having to change it more frequently.  Due to a shortage of pentamadine, Reya will start taking an oral medication Bactrim to prevent a strain of pneumonia called PCP, which commonly affects immunosuppressed patients. 

Attending school was another point of discussion. Mireya will continue with Homebound instruction until the Spring.  Originally we talked about the possibility of her physically going to school in January or February.  After a lengthy conversation with her Medical Team, we all are on the same page and decided while it 'might' be okay for her to go back sooner, it's not worth risking her getting sick and her treatment being sidelined.  According to the Docs, this cold and flu season is showing itself early and not only out of control, but with resistance. 

I attended a Parent Forum through ASK about a week ago and learned about an awesome organization called Hopecam. Hopecam is working with Mireya's school to install software and a webcam in her class so she can be a part of the classroom experience.  It will be great for her to participate in lessons as well as see and interact with her classmates.  We're looking forward to being able to exist within the class through Hopecam!

We're back in clinic just after the New Year!  Having our appointments stretched out is a good thing, but it's hard for us to go these longer stretches because we don't know what Mireya's body is doing. Sounds a lot like doubt, which is the opposite of's not, just a reminder that during these 'stretches' earlier this year, Mireya's graft starting failing. God is a healer and we are totally relying on him and counting down the days to total and complete victory.   Continue to keep us lifted and pray over/for Mireya's body.  All things are working together for the good!   

Friday, December 14, 2012

Prayers for Newtown

I've sat here most of the day with a pit in my stomach as the ruthlessness of these events has unfolded.  So much is going on in our world that is out of control.  My heart is broken and aching for the families of the children and adults killed senselessly today.  It's apparent that some sort of domestic family situation played out and the helpless victims were just going through the routine of their day.  It's unimaginable.  I cannot fathom being a parent who sent my sweet, innocent child to school only to be placed on standby without knowing if they are dead or alive.  We've taken prayer out of schools.  We need prayer more than anything.  We have to cover ourselves and our families in prayer.  There is madness going on all over the world.  Hug your children and those you love and tell them you love them!  My son got of the bus and I just held him close with tears in my eyes.  No one knows the day or the hour....the Lord welcomed 20 little angels into heaven today.  Keep these families lifted as they have to go through identifying and burying their children.  No parents should have to bury their 5 year old child.  The pit in my stomach has yet to subside, the heaviness in my heart will linger on.  The pain in these parents hearts will last forever.  I'm thankful for those that were positioned to quickly get children and themselves to safety.  More information will become available as the story unfolds, but nothing will change the terror of these events.  I'm praying for the hearts and minds of these precious little ones that witnessed such a tragic and horrific ordeal. There is a lot of damage control to be done.  Console our hearts Lord, bring comfort in the midst of this the unthinkable.


Wednesday, December 12, 2012

Make A Wish Radio-thon

#TeamBolton had a great time hanging out with Melissa Chase @ 103.7 (The River) for the Make-A-Wish Radio-thon.  Mireya is a Make-A-Wish kid and our trip was one we will treasure forever. We loved visiting the station and sharing our story, our experience and our love for the Make-A-Wish foundation.   We hope you had a chance to tune in and support this wonderful organization.

Friday, December 7, 2012

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!

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.

Saturday, October 6, 2012

We're on the Move

Mireya had a great week!  She's feeling good, looking good and her counts are great.  We had our first series of PAL testing in school and she did amazingly.  We're really pleased to have a full week of great labs.  Next week we'll determine where we are with chimerism.  The days are ticking away to Day 100.  We're definitely looking forward to maneuvering out of isolation.  We're on the move in the right direction. Thank you Lord for the increase in Reya's counts and for continuing to strengthen her body.

Monday, October 1, 2012

Round & Round

The world of counts, labs, cells and test is ever evolving. Mireya's counts have been good, her chimerism ratios are getting tricky, but we're still believing and trusting God.  It was noted in our last appointment that Mireya's skin 'appeared' to be dry and her lips seem to be in a revolving state of chapped and cracked.  I've seen cases of both chronic and acute GVHD and the natural instinct is to saturate the skin in every moisturizing and protective lotion and potion available, but the dryness and chapping associated with GVHD is not remedied by simply applying lotions or cremes. Fortunately, there's a low percentage of GVHD in sibling donor cases, but these occurrences have our Medical Team concerned about Graft vs. Host Disease.  We are continuing to confess the word over Mireya's body and against GVHD.  We know that dry skin and cracked/chapped lips are also common side affects of chemotherapy.  It's definitely something to keep an eye on and it remains on the top of our prayer list. We're thankful Mireya's counts are increasing and holding steady.  We choose to place our focus on the positive progress. Everything that concerns us, concerns God and he's working it out despite how it 'appears' or the 'implied' negative that rolls across the radar.   

Tuesday, September 25, 2012

Shifting the Atmosphere

Doing Homework in Clinic
Mireya has had a couple of really good appointments.  Her counts are fluctuating between good and very impressive.  She's been placed on a schedule to wean her off the immunosuppresion meds.  This has us a little concerned because it seems so early.  It wasn't until after she was taken of her Tac earlier this year that we began to see the rapid decline in her counts.  With the GSCF we see her counts soar across the board and recently without the GSCF, her counts are holding in a good place.  Our Medical Team is approaching this weaning process very cautiously. The biggest concern is graft failure or Graft vs. Host Disease (GVHD). With this new train of thought, we realize having her on immunosupression meds for the longer duration may have hindered her early on as opposed to help her because the suppression meds not only suppressed her cells but also suppressed Jalen's.  When she was taken off completely, Jalen's remaining cells were decimated by hers.  We're hoping as we dial back the suppression meds that Jalen's will continue to have a foothold and flourish without opposition.  It appears to be working because the last two chimerism tests showed a decrease in Reya's cells.  Thank you Lord!

Reya continues to enjoy her afternoon classes with her teacher.  I met with the school this week to put an IEP in place for Mireya.  That is a very involved process.  Fortunately that document can be amended and modified as needed, but I'm happy with what we have in place.  Mrs. Saum introduced the "Monkey" to Mireya's class along with some pictures of Reya.  The class sent her a really awesome picture in return.  Mireya was so happy to see all her future friends and classmates holding and huddled around her Monkey.  She giggled with excitement. #priceless

We're very thankful for Mireya's progress over the last week.  Thank you for your continued thoughts and prayers.  We believe our praise, prayers and worship have created a shift in the atmosphere and everything we stand in need of, God will provide.

Wednesday, September 19, 2012

Full Days

Today was a big day.  Mireya had clinic, which was full of shifts and turns, but today was also her first day of school with her teacher.  Clinic we won't spend to much time on, we'll just give it to the Lord and continue to trust him to work it out.  A second chimerism test showed a significant jump in the presence of Mireya's cells which has us all concerned. As a result, Reya was taken off of one of her immunosuppresive medications.  She has been taking two and it is likely those meds are also suppressing Jalen's cells.  Reya was given GCSF today to see if we can boost her counts.  Her white count took a surprising dip to 1.8 (ugh).  That pesky cough has also intensified.  We are scheduled to have a chest scan done at our next appointment. Infections can crush your white count.  Take in consideration a white count that is already significantly low, add illness and the outcome is a severely taxed system that can collapse at any moment. Prayerfully the GCSF makes a difference. A additional chimerism test was ordered to see if dialing back the suppresion medication over the last week has made any difference in the ratio of cells.  Another concern with eliminating the suppression medication is the increased chances of GVHD.  Again, we're giving it to the Lord and believing he will work it out.

Mireya was super excited to start Homebound with her teacher, Ms. Saum.  They worked on several projects, read books, drew pictures for a book the class is working on and talked about the Constitution.  Jalen's class is also working on the constitution. Mireya thought it was cool 'she' was working on something Jalen was also learning about in his class.  Ms. Saum told the class she would be seeing Mireya after school.  They were all very excited and inquisitive about the classmate they have yet to see or meet.  One of the projects Mireya worked on was a "Me" drawing.  Her "Me' drawing was so cute. She drew a picture of her dancing.  It almost looked like she was floating in air. The part that tickled me the most is she highlighted the 'fabulous' shoes she drew in picture.  I'm glad Ms. Saum will be able to share Mireya's work in class so her classmates will get a sense of who she little dancer with impeccable fashion sense.

Mireya is scheduled to received one hour of instruction each day (this can be altered, as needed).  After a long day in clinic, it was apparent toward the end of the hour, Mireya was tiring of the process.  Overall, Day 1 was a huge success.  I'll have to find something really fun and special to do with Makinley during Mireya's Homebound sessions, because she was having a bit of a struggle with not being 'included' in the lesson plan.  Ms. Saum will also be introducing the class to "The Monkey" this week.  We're so thankful Mireya can receive instruction and participate in school through this program until her health improves.  We're looking forward to sharing a favorable report after our next appointment this week.  Continued prayers as we toe the line and keep the pace.

When you pass through the waters, I will be with you, and through the rivers, they will not overwhelm you.  When you walk through the fire, you will not be burned or scorched, nor will the flame kindle upon you.  Isaiah 43:2

Sunday, September 16, 2012

Color Run Fun

My big girl had some fun in RVA this weekend at the Color Run, dubbed the Happiest 5K on the Planet.  After visiting the website and seeing all the awesome pictures taken, I definitely want to participate in this event when it comes back to town or close by.

The Color Run benefits a local charity in each city where it is held. This year the selected charity was Church Hill Activities and Tutoring (CHAT). CHAT creates and sustains intentional communities that are dedicated to transforming the lives of at-risk youth in Church Hill by equipping them to rebuild the city through academic instruction, character development, life skills training, job-readiness and internship programs, and health and wellness activities. Visit their website at

I didn't get to spend a lot of time with Paris while she was here.  I'm totally OCD about germs and infections, so she and her crew stayed at her Dad's. It's funny how your kids come home and have agendas and so many 'things' going on, but I had to see my girls face and wrap my arms around her before she left.  I loved the few moments I had to spend with Paris and the LC girlies. That actually goes down as the quickest visit to date, 00:30:00.

I realize this stage and phase of life for Paris, is going and growing but I'm so glad we are able to talk, Skpe, and Factime several times throughout the week.  It allows us to connect, remain abreast of the happenings and affirm our relationship in a new way.  I'm looking forward to kicking Aplastic Anemia and treatment to the side and living freer, doing more and not missing out on things I/we would normally be doing.  Right now in this season of our lives, caring for Reya and guarding/protecting her from any and all things that could prove harmful is our top priority.

I love you pare, paulap, apari, heart, my sweet girl and original road dog.

Saturday, September 15, 2012

Holding Steady

I Heart Bacon
We had favorable appointment to round out the week.  Reya's counts are holding steady.  We didn't have to receive GCSF and one of her immunosuppressant medications was dialed back.  Hopefully it will allow us to see what her body can do with less suppression in place.  The chimerism results showed a combination of cells, but Wonder Boy Jalen's were most prevalent.  This is an excellent sign.

Mireya is having a difficult time sleeping at night.  It's not uncommon to find her awake singing or wandering around in the wee hours of the morning.  This super night owl schedule causes her to be extremely tired throughout the day. We had this problem post transplant last year too. We're not certain if any of her meds are specifically creating an issue, but we'll bring it up when we're in clinic next week.  Reya's appetite is also a bit quirky. You never know how chemotherapy will affect the taste buds. Her all-time favs this week are hot dogs, bacon, frozen pancakes and butter crackers.  Reya has asked for these butter crackers as an appetizer, side dish and snack. At this rate, I may have to buy stock in Eggo, Oscar Meyer and Keebler.

Mireya is very happy to be home, she tell me at random points throughout the day how happy she is to be in her house, in her bed and with her family all together. Thank you so much for your continued prayers.  Please say an extra prayer for Mireya and her ability to rest at night. 

Friday, September 14, 2012

Musculoskeletal Madness

Jalen came off the bus looking like he had dislocated his shoulder.  He said he was not in pain, but said that something happened when he reached down for his scissors while sitting at his desk at school.  These are the type of issues that always happen after 4pm on a Friday.  Fortunately I caught the Pediatricians office before the phones rolled over and was told to take him to Orth On Call.  Who knew this place existed? I wish I had thought of this.  Well I'm not an Orthopedist, so no gain on this one, but its great to have a Urgent Care Facility specifically for joint and bone injuries in the area. Especially after hours and for those weekends that specialize in rolled ankles, fractured wrists and broken bones.  We walked in and sure enough there were several other little ones and their families dealing with sporting event mishaps and 'out of control' play injuries.

When it was time for x-rays, Jalen's medical setting anxiety tried to rear it's head.  We had a huddle, I gave him the breakdown (oomph-a-breakdown), yelled 'break' and he went in there and got those three x-rays done. *high five son*  I'm realizing we have to navigate one medical situation at a time until Jalen really realizes, even if someone has to do things he may not like or that temporarily cause him discomfort, overall it's to help him.  After a few x-rays and an hour or so of waiting, we were happy to know it was not dislocated.  Apparently when Jalen reached for his scissors, it triggered the muscles in his neck and shoulder to seize up.  He had a sizable group of nodules on the left side of his neck, making it very difficult to turn his head to any degree on that side.  I had a similar episode many years ago while  simply reaching for a phone that triggered almost paralyzing pain, so I could immediately identify with the situation.  That was the beginning of my love, love relationship with Chiropractors.

It was very disturbing to see Jalen's shoulder (visually it looked like a see-saw, up on one side and down on the other), but he found that holding his shoulder low, alleviated the strain and discomfort in his neck. The diagnosis was Cervical Strain/Torticollis. We were told to give him ibuprofen, apply moist heat and rest the area as best we could.  He has a follow-up appointment with a Pediatric Orthepedist this week because alleviating the problem may require physical therapy. I'm a proponent of applying all techniques and methods that can get you back on track quickly. I've had a number of sports injuries and sports-related surgeries, requiring on-going physical therapy and debilitating sedatives.  I find it interesting that most medical practices don't endorse or suggest Chiropractic care as an option.  Fortunately I know first hand the benefits of both, so I chose to have Jalen assessed and adjusted by a Chiropractor the next day.  Within minutes he had a greater range of motion and we were able to tackle those knots in his neck.  We continued the regimen of heat and rest and Jalen is feeling considerabely better.  We'll monitor his progress and prayerfully have success within the next few days through home remedies and rest. 

Monday, September 10, 2012

Life & Monkeys

Our last appointment was a positive one.  The GCSF has helped to increase Mireya's counts.  Her magnesium still lingers, so we'll up the frequency of the IV Mag at home.  Mireya has also developed a slight on again off again cough.  We will need to restart the pentam in about 10 days to help fend off pneumonia.  Her tac level came down considerably and now is below normal.  This count is a mystery...26.6 to 6.9?  Mireya looks good, sounds good, and hasn't displayed any of the markers for GVHD (Graft vs. Host Disease). Thank you Lord!

Mireya will start Homebound soon.  Her kindergarten teacher has volunteered to be her Homebound teacher which is really exciting and a blessing.  We talked to the ASK team this week about Mireya, school and the " Monkey in My Chair' program.  I'd received information about the program from another clinic mom, whose sweet little girl also started Kindergarten this year.  'A Monkey In My Chair', was created to allow kids in treatment to remain included and connected to their class.  I was disappointed when registering to find the program was only extended to children with Cancer. Diagnosis aside, this is something that would be wonderful for any young child going through treatment that prevents them from attending school.  I really love the concept and had been thinking about how we could possibly incorporate something similar for Mireya while she is away from her class.  From the hearts and through the connectivity of some very thoughtful people, this sweet Monkey found his way to us (some rules and restrictions are meant to be bent just a little). We're all in this together, and definitely wish none of our kids had to deal with anything having to do with chemotherapy, transplants or with life threatening appended to it. I'm super happy she'll be able to take advantage of this program until she can physically join her class next year.

We're thankful for stabilizing counts and continuing to pray for an increase in Mireya's ANC, hemoglobin, platelet and white cell counts.  Everything is working together for our good.  We're standing on that word. Thank you Lord for continuing to do what only you can do....sustaining and preserving life.  Living (L) Intentionally (I) Fully (F) and Expectantly (E).

Thursday, September 6, 2012


Mireya's tacrilimus level is still elevated.  Testing this level allows us to determine how the medication is being absorbed in her body and if it remains below the toxic level.  There are several signs of Tacrolimus toxicity, the most urgent is kidney damage.  It is important that we get this level under control.  Mireya's magnesium level has also continued to decrease.  Managing Mireya's medications is a balancing act.  We have antiviral, antifungal, antibiotics, electrolyte repletion meds, sludge removal meds (liver), multivitamins, folic acid and two immunosuppressive medications.  One of the negatives is several of these medications counteract with the full success of a few others.  Doing level counts and making necessary adjustments along the way is very important.  Mireya is a trooper with taking all of these medications as scheduled.  After receiving counts, one of the medications has been eliminated from the roster.  IV Magnesium has been added to hopefully get her levels up and she was also given GCSF to see if we can boost her white cell count.  Reya's platelets are over 170k, which is amazing.  Typically the platelets are the last of the counts to increase.  It's a little puzzling as to why of the three lines the platelets have jumped the highest the quickest, but we'll take it.

Our current schedule is at least three times a week for counts and any necessary treatments.  The appointments/days can last for hours.  After this week I feel like I should collect a paycheck for the hours clocked, but it's definitely better than being in the hospital, so you take it all in stride.  We enjoyed birthday cake today in celebration of all the September Hemoc birthdays.  Special thanks to Cakes by Graham.  It was beautifully decorated and absolutely delicious.  We also had a special visit with Music Therapy while we waited. Mireya enjoyed playing the guitar, singing songs and banging on the hand drums.  She shared with me, she would like to take guitar lessons.  Strumming is great, but rocking out with a pic is Mireya's preference. These programs and visits make the time 'seem' to go by quicker and always brings a smile to the face of the children. 

We're back in the mix manana and hoping some of these modifications will bring about positive results.  God is continuing to work it out.  He never slumbers nor sleeps and because of that I can lay my head down and rest well at night.  Thank you for continuing to visit the blog.  Everything we need God will provide.  This is my confession and my belief.

Confession & Expectation ~ Phillippians 4:19
My God shall supply all my needs according to his riches in glory by Christ Jesus.

Tuesday, September 4, 2012


It's been a weekend filled with sadness. Cancer has taken the lives of two very special people.  There are no words for the heartache and grief we feel.  We're grateful to have known a vibrant, warm and loving woman & mother who fought cancer with her daughter (twice) and won, but sadly has lost her own battle.  We pray for a family who will no longer enjoy the laughter and smile of their sweet 4-year old little boy.  We've spent the last 16 months, praying for, encouraging and celebrating every milestone with one another (no matter how small or incremental).  It hurts.  Enjoy and savor every moment you have with your children.  Hug them and remind them often of how much you love them.  Life is so precious.

This was our first day in clinic since being discharged over the weekend.  Mireya's counts are still fluctuating.  Her physicians are very concerned about how high her tac level is. We will return to clinic in the morning to have the level rechecked.  A chimerism test was also ordered to show the cellular makeup of Mireya's cells. Boy (Jalen), Girl (Mireya) or both and to what degree (we're rooting for the Boys). It is really important that we keep Mireya protected from bacteria, illness and infection.  Even though Mireya's counts are registering in fairly acceptable ranges, she is immune suppressed and her system is extremely fragile.  Hand washing, sanitizing, mask wearing and avoiding crowds and situations that could prove potentially harmful (which is pretty much everything) is essential.  Mireya has been less cooperative about wearing a mask.  Last year we could decorate them with Princess stickers to make it a little more tolerable.  This go round, she could care less about stickers and is extremely sensitive about people 'seeing' her with a mask on.  This is something we'll continue to focus on 'why' it is important and keep pushing through.

Comfort and peace for these dear families as they maneuver through the days ahead without their loved ones.  We are so fortunate our paths intersected and we're thankful for the imprint they left on & in our hearts.  It will forever be cherished.  Prayers for all things that concern and consume us.

Psalm 46:1 God is our refuge and strength, an ever-present help in times of trouble.

Saturday, September 1, 2012


Ready to Go Home

Riding & Designing

Home Sweet Home
Hmm it was a toss up between Freedom (George Michael), or a line from Peebles, 'I'm out the door babe, there's other fish for us to see' (#TeamBolton revamp).  Blame it on a dozen SongPop challenges while at the hospital or my love for the 80's.  Either way we are home...Jesus, Jesus, Jesus (Rev. Timothy Wright).  You should always have a song in your heart and a 'jukebox of praise' (Pastor Calvin Duncan).

We're so happy to be home together @Last (Etta James).  Thank you Lord!  We have a small arsenal of medications and an even tighter schedule to follow (we left with spreadsheet in hand).  Masks have been set aside and reminder notifications have been set. Monday is a holiday, so we'll come to the Transplant Unit tomorrow for counts.  Then it's back to the Hemoc hustle on Tuesday, after getting Jalen on the bus.

Thank you for your prayers, support and love over the last several weeks.  We're praying that Mireya's counts will continue to increase and she will be without illness or issue as we maneuver through milestones and treatment.

Psalms 100:2 Worship the LORD with gladness. Come before him, singing with joy.