School Days

Mireya has had exceptional progress over the last week with counts.  Her counts last month were the best we've seen in two years.  Last week her counts were even better than those charted last month.  The Head of Hemoc (Pediatric Hematology and Oncology) had to take a pause when those numbers popped up on the screen.  Simply amazing!  She was released to start school last week with some restrictions, but we are so happy she can finally go to school.  She has been looking forward to it since the beginning of the year.

I worked with her teacher(s) and the school Administration to ensure we have everything in place.  We scheduled a tour and visit with her classmates to help prepare Mireya for the big day.  Meeting her classmates for the first time was a precious occasion.  There was one little girl, who has sent Mireya pictures almost weekly of the two of them playing together.  She was overcome with emotion when she finally got to see Mireya for the first time.  She sweetly grabbed Mireya's hand and took her around the classroom to show her all the different stations and neat things.  It was so beautiful to witness.  The kids were super excited to see her...she was a total ROCKSTAR!  Mireya is a bit more reserved and observant and it was a little overwhelming at first having so many people approach and demand your attention, but by the time it was over, she was on top of the world.  The kids reminded her to take her Monkey home, because it would no longer occupy her seat.

 In the words of Mireya, her first day was 'fabulous'!  It was a bittersweet experiencing my "First Day of Kindergarten' as a Mom six months later, but my tears were those of joy. By the end of the week transportation had been arranged for her and she is enjoying riding a much less crowded bus to school. Because Mireya is only allowed at this time to return to school half days, she will continue Homebound a few days a week to complete her Math and Geography tracks.

Continue to keep us in your prayers, we're thankful and grateful to reach this milestone and so happy for the continued progress for Mireya medically.

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.

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.

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.

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).

Throw Your Hands Up

I Will Watch Over and Protect Her

From the Beginning We've Been Side by Side

We're raising the roof AND praising God! Reya's counts were through the raised roof today.  The white count doubled.  Her platelets and hemoglobin also increased.  Controlled freedom is in sight.  Last night Mireya asked me if she could go home?  She's tired of being in the hospital, but also thinks some of these cool things in her hospital room will look great in her room at home.  Last year when Mireya started to speak 'out of her mouth' about going home, she was able to do so within days. We're hoping that will be the case this time too.

I found a throwback picture of Jalen and Mireya as little ones, in their camo gear looking like they are ready for battle.  Little did we know how telling this photo would be.  Fighting with and for one another through love....for life and continued togetherness.  God knows all things.  Thank you Lord for Jalen.  There are so many still awaiting donor matches.  You gave us perfection in an all eight marker match blessing.  We endured four losses before being blessed with this precious boy and two additional losses between him and Mireya.  The enemy was coming hard for the seed.  It's not going down without a fight, but guess what, the battle is not ours, it's the Lords.  We do our part and he does his.  Mireya's name means 'miracle' in Spanish.  God knew not only would we be walking it out, but she truly is our miracle.  Life and Victory will continue to follow.

Nothing is too difficult for God. Everything we stand in need of, he will provide.  Trusting is not always easy, but hold on to your faith and keep believing.  It's an emotional rollercoaster.  It very hard to watch your child endure a illness that threatens to claim their life.  I mean seriously it's hard to watch your child injure themselves where you weren't able to prevent it from happening, or fix it. Dealing with something you have no control over can make you feel helpless.  We're human beings, it is natural for us to respond to things through our emotions...but God! There comes a time in the midst of trials and adversity that you have to confess God is in control, and has the power and ability to work it out and see you through.  Worry, stress and anxiety will destroy your peace.  Is it always peaceful? No, things change from day to day, but I remind the Lord that I'm depending on him, I'm trusting him and I need him to help us through this.  The only thing I can stand on is his promises.

Deuteronomy 30:6 And the Lord thy God will circumcise thine heart, and the heart of thy seed, to love the Lord thy God with all thine heart, and with all thy soul, that thou mayest live. (KJV)

Hebrews 2:13 And again He says, My trust and assured reliance and confident hope shall be fixed in Him. And yet again, Here I am, I and the children whom God has given Me. (Amplified Bible)