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.

The Difference a Year Makes

 

One year....365 days.....ups, downs, tears, joy, regrouping, reclaiming, but best of all.....rejoicing!!  We've reached a major milestone, our one year appointment. It's hard to believe that just one year ago we were being admitted for our second bone marrow transplant.

In the Clinic, I met a few parents new to their diagnosis and the routine.  The Fishbowl was filled with kids receiving chemo therapy and transfusions.  I was immediately flooded with thoughts of the two and a half years of that rotation.  I encountered a parent overwhelmed with concern as their Medical Team gave them the news that a Bone Marrow Transplant is their next viable option.  We had moments to talk and embrace, but I look forward to being able to share (from the other side of the coin) our experience to help prepare and align their expectations.  My heart was also heavy as I noticed the frailty of life in a few of the young patients who have been fighting these illnesses with all they've got. I sadly learned mere days after this visit that one of those precious lives would suffer no more.  It's unimaginable and my heart grieves with this family. 

Prior to this appointment we'd received a letter that the Head of Peds Hemoc would be leaving VCU.  Reading this letter made us sad. Not sad for ourselves but for the hospital.  Dr. Godder is small in stature, but very matter of fact and she shoots it straight.  When your dealing with life and death of a child, you want 'shoot it straight' and give me all the variables (at least we did)!  This woman is a wealth of knowledge and wisdom.  What are the odds that one of the best Physicians in this arena would be 'in place' during our diagnosis and active fight to partner with us and be the overseer of our daughters care? We're sad to see her go, but are happy she'll be closer to her family and continue to be a major force and resource doing something she loves...."bone marrow".  It was bittersweet to have our last appointment with her just mere days before she leaves.  She made a point of coming in to have her appointment with Mireya even after adjusting her schedule to see the remainder of her patients the week before.

Mireya had to have an EKG and a battery of tests/labs completed to monitor her progress and success.  We'll be seen every few months for the next year to ensure Mireya's progress is staying on task. Today we had an unspoken release. The release of emotion likened to when you had your first child and the Doctor handed you a healthy boy or girl and you were overcome with tears and emotion. Mireya is even more beautiful than the day they handed her to us AND (despite it all) her health has been restored.  Reya has been taken off all medications!  She will be able to start getting her immunizations and go to school with no restrictions.  There are several objectives and areas we have to be watchful over, especially given the medications and treatment she's received over the last few years, but we're believing even the slightest of instances will not be on our radar. We continue to stand, trust, believe, and confess  that her body will function as it was created and designed without incident.  

We have met some amazing families and people.  It takes one to know one (and to understand)......our circumstances and situations may be different, but we're all fighting for the same thing.  I'm looking forward to continuing to to serve, support and be an advocate for care and to those organizations/foundations/businesses doing amazing things to make a difference in the lives of others.

Thank you for your love, support, prayers and any/everything that was done to lighten our loads and minds during this process.  Life is good and our best and brightest days are ahead of us.

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! 

Sharing & Caring

Writing..Sharing..Speaking and Connecting...several things I'm extremely passionate about.  If I had to add a fifth, it would be 'Serving'....let's just add that because that is the essence of who I am.

I've enjoyed speaking on behalf of the many organizations we love and who have loved and supported us over these last two years (Faith and Family Church, ASK, Connor's Heroes Foundation, Starlight Foundation, Make A Wish Foundation, Give Kids the World, Children's Miracle Network ,Children's Hospital of Richmond) and the Miss Chesterfield Organization.

I love sharing our story, the goodness of God and the collective beauty of the human spirit.  As a result, I believe it has become a part of my mission and assignment to educate and bring awareness, participation and partnership to Organizations that are making a tremendous difference in the lives of others.

I've had the pleasure of partnering on several occasions over the last year with Children's Miracle Network and Children's Hospital of Richmond to speak with/to their local and national partners in an effort to allow these partners to 'see' and 'hear' the difference they are making.  As a result other avenues and opportunities have been birthed or opened up.  The Foundation contacted me last week to share they are launching a new group starting with #TeamBolton.

an excerpt from that message...

"This spring, we will initiate a new group within our Foundation and we’d like to begin with you. Families with Heart will be a group of involved, passionate and motivated patient families who want to continue to be involved and support our efforts to help CHoR through event participation, story-telling and at times, speaking opportunities"

I was truly humbled to receive this.  Don't ever underestimate the 'Power of One'...how far reaching one voice, one experience, or one decision can make or the impact/imprint it can have.

Ambassador.Champion.Advocate.Spokesperson.Supporter...stay tuned for more!

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.

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.   

Adjustments

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.

Ups, Downs & Changes

Look Mom...No Lines

Three Amigos

Mireya's counts have been through a series of highs and lows over the last few days.  We saw high numbers over the weekend that were seemly to good to be true so early, but the team is not concerned.  Mireya is right where they expect her to be.  Several significant days of baseline counts will allow us to revisit going home.  Reya's appetite and spirits remain good.  She has been taken off of all IV meds and even had some time disconnected from the pole and pump.  She was so happy she twirled and danced all around the room.  Just that sliver of freedom brought a huge smile to her face.

Changes have been made to Mireya's antibiotic medication.  The team believes the fluctuation and decrease in her white counts is due to the co-processor antibiotic she was taking.  She's been given a round of the new antibiotic and we're waiting to see if this change makes a difference in her counts. Reya is still receiving GCSF to help boost her cell counts.

This afternoon, I ran into the lady who doles out the 'deluxe cut' to patients on the floor.  Last year I saved Mireya the agony of watching her braids fall out one by one (literally).  This time, we'd decided 'if' Reya's hair started to come out, she would have to 'see' it coming out and realize it 'needed' to be cut.  She reminds me often and holds me personally responsible for 'letting that lady' cut her hair.  We're happy Mireya's hair has remained intact through this round of chemo.  I believe if we get through this week, we'll likely avoid this as an issue.

We're continuing to trust God to do what only he can.  Thank you for your prayers, thoughts and love.  God is moving and all is well.

It is well with my soul...you are the rock on which i stand, by your grace it is well, my hope is sure in Christ my Savior...it is well with my soul (Hillsong)

Fun Filled Days

Mireya's had a full day of activities and fun. The Art Teacher, Ms. Gretchen came by, she and Reya painted several pictures and made all sorts of things with playdough.  Ms. Fran, from Connors Heroes stopped by to check on Jalen's status and visit with Reya.  She also bought Mireya the movie Enchanted, which we really enjoyed watching.  The Music Teacher stopped by earlier this week to see if she could visit with Mireya today and sing Princess songs.  Mireya had so much fun playing the guitar and the Q Chord.  She learned to play Mary Had A Little Lamb and Twinkle, Twinkle Little Star all by herself.  Friends are in town and stopped by for a quick visit.  Mireya is seeing a lot of new faces, but it's always great to see old, familiar faces you know and love.  Ms. Nadra, the Hospital Teacher also visited with us today. She and Mireya had fun playing a host of engaging educational games on the Ipad. We had a quick call from Jalen and Makinley on Facetime, and now Mireya is back to playing her new games. We LOVE and are so grateful for our I-gadgets.  They've really been helpful in keeping us connected and Reya occupied.

Medically speaking, Mireya's throat continues to be an issue.  An analgesic mouth rinse has been added to her medications to help with the discomfort.  Mucositis is a common culprit associated with chemotherapy that affects the mouth, mucous membranes and the digestive tract. Mireya's stomach has also been bothering her.  We're praying over Mireya's desire and ability to eat because we had issues with Mucositis last year and it resulted in her being put on TPN for nourishment purposes and because of concerns with her weight.  Reya's magnesium level continues to linger.  They've added oral magnesium, in addition to the IV Mag, to see if we can boost her magnesium level.  It has been a super busy day, but Mireya enjoyed every minute of it. We're so appreciative of the organizations, programs, and the resources extended and made available to us.  Seeing her in good spirits with a smile on her face, brings me tremendous joy.

If At First You Don't Succeed

One of Our Favorite People Stopped By

try, try again.  Day 2 of Apheresis started off with a bit of uncertainty.  There was concern because Jalen's white cell count dropped significantly from the day before.  Although the white count was low, another cell marker almost doubled, which was very positive.  The decision was made to proceed with harvesting Jalen a second time and if necessary a third time to get what was needed for Mireya.  Regardless of what was harvested the second time, Mireya was scheduled for the transplant later in the day.  A second transplant would be coordinated for the following day with the additional cells collected. Jalen was in favorable spirits.  Since the lines and IV were already in place, it was simply a matter of connecting him to the Apheresis machine and starting the harvesting/collection of his cells. Within the hour, it was apparent Jalen needed something to allow him to relax and/or rest to complete the process.

Jalen is very inquisitive, he needs to know specifically what is going on at all times and why.  What I observed is, even though things have been explained to Jalen, he is still waiting for the unknown to occur.  As a result he was very restless.  The excessive movement caused the machine to stop on more than one occasion.  I asked the Doctors if they could give him something to help him calm down so the harvesting could be completed in a timely manner.  The medication took effect and Jalen's  disposition changed to agitated and argumentative.  He started talking very roughly and without care.  I then asked if they would give him something to allow him to sleep.  Within minutes he was asleep and the process was well on its way. Three hours later, and the harvesting was complete.   We now had to wait and hope we got what we needed.  Within an hour, the Head of Pediatric Hemoc came in to tell me we got more than we needed.  They collected over 7 million cells in that sitting for a total of over 9 million cells.  Thank you Lord!  Jalen needed the additonal day on the GCSF for his levels to peak.  Enough cells were collected from Jalen for two full transplants or one transplant and two boosts.  Amazing!  Those additional cells will be stored off-site and available in the event they are needed again. We're believing that will never be the case for us.  

Jalen will need to eat lots of foods rich in folic acid and receive iron supplementation twice a day for about 3 months. His hemoglobin took quite a hit during this process too.  He will need to take it slow for a few weeks, but Jalen is otherwise healthy and we expect his body to replenish those cells soon.  The PICU team had hoped to remove all of Jalens lines (i-port, iv and the line from his leg) while he was still asleep or at least coming out of his rest.  It didn't quite work out that way, they were about 15 minutes shy of a more peaceable situation, but we were finally able to get it done.

Jalen had to be monitored for another four hours before he could be discharged.  We would not be able to see Mireya before her transplant.  A second transplant day is not necessary because all the cells were assembled and given during the scheduled transplant.  Quentin and I were communicating from opposite ends of the hospital, keeping one another abreast of what was going on with both of the children.  Reya had been given a medication in preparation for the transplant that altered her otherwise sweet disposition and had her bouncing off the walls, ceiling and floors.  By the time Jalen was discharged, it was late and the transplant was complete.  Mireya was visibly tired (bouncing off the walls for several hours will do that to you).  We were all exhausted.  Jalen and I didn't go to bed until about 3am, because he spent the majority of the night hallucinating about glittery things floating in the air, spiders on the walls and some sort of little black things squirreling around in the clock.  Drug side effects are no joke.  Quentin and I quickly said our good byes with hopes that everyone would settle down for a good night's rest without issues or incident.

I'm extremely proud of Jalen for all he has endured to help preserve his sister's life.  He can't fully grasp the magnitude of what it all means, but he knows he's done a good thing for his sister.  Last night he wept, telling me how much he loved his sister(s) and how he never wanted her to be sick again.  The totality of his emotions seemed to surface at that time, it was truly a heart wrenching moment. 

The next few weeks are critical in this process.  For now we wait.  We wait for Mireya's body to accept the cells (the love and the prayers behind them) and for engraftment to occur and her counts to increase. We appreciate the prayers, posts, calls and messages.  Continue to pray over this process and for Jalen and Mireya as their bodies recover, heal and spring forth new life. 

One Step Closer

Apheresis Machine

Jalen was a Super Hero today.  I will remember this day forever.  Despite it all he pressed through his fear and did what only his body is designed 100% to do.  We arrived at the hospital, got registered and went to the Hemoc Clinic.  Jalen received the last GCSF injection, had his IV placed and labs drawn.  He was handsomely rewarded for being a such a trooper.

We immediately came up to the PICU (Pediatric Intensive Care Unit) to have his line placed and to begin the Apheresis process of harvesting his stem cells.  Jalen's room was filled with lots of cool things celebrating and reminding him of how awesome he is as a Super Hero Donor Brother.  Within that small window of time we were greeted and bombarded by a gang of people who wanted information, needed signatures, or wanted to revisit the procedures in detail.  It was very overwhelming and only added to Jalen's angst.  How many people can you fit in a PICU patients room?  There were approximately 12 in rotation at any given moment.

Anesthesia was able to put Jalen under within about 20 seconds.  They proceeded to hook up a few additional monitors and my boy found some combative energy, so he had to be taken up a notch.  Once he was settled and all his vitals were steady, the team placing the line started laying out and lining up their supplies.  At that point I started to question if I 'wanted' to be in the room while they inserted the line.  After a very brief discussion, I decided I would wait in the Family Lounge until the line placement was complete.  The process normally takes 15-30 minutes.  It was hard to leave him there, but I was assured as soon as it was done, I would be called before the Apheresis team started harvesting Jalen's cells.  I was told no news was good news.  I went into the Family Lounge and began to pray for both my children and their respective halves of the whole picture.  After about 40 minutes, no news definitely did not feel like good news.  I began to wonder if something was wrong.  Each time the main door to the PICU opened, I could see into Jalen's room and they were working hard.  I later found out several attempts were made to place the line in Jalen's right leg, but due to the close proximity of his artery and his vein, they were not able to get the line in successfully.  They kept getting the artery which eventually caused an enormous hematoma under the skin.  That area was bandaged and they moved to the left leg which finally was a success. 

Jalen came to and was mildly combative.  The harvesting of the cells was extremely important, so the Doctors decided to give him medicine to relax him and allow him to sleep so they could get through the process as quickly and smoothly as possible.  The Apheresis machine withdraws the blood from the body and separates it into plasma, platelets, white blood cells and red blood cells.   The stem cells are removed and the remaining components are returned to the body.  A anticoagulant medication is mixed in to prevent the blood from clotting while outside of the body and saline is given to replace the removed components.  The procedure normally takes 1.5-3 hours.  Jalen's labs showed his counts were lower than expected, so they decision was made to collect cells for an additional half hour to try to collect as much as possible.

Once the cells were collected, it would take about an hour to determine if we were successful in collecting the 4 million cells needed for Mireya's transplant.  If we were unsuccessful then Jalen would be given a double dose of the GCSF and his cells would be harvested again.  The transplant would still be conducted as scheduled, because Mireya's conditioning schedule is very specific and on the 4th day she would need to receive what cells were collected from her brother.  If it was not enough, she would receive a second transplant on the following day.  We were notified later in the evening, the apheresis of Jalen's cells did not produce the required amount of cells to complete the transplant and he would need to be re-harvested tomorrow morning.  This is not the news we wanted or expected to hear, but we will plan to repeat the process tomorrow and trust that an additional dose of the GCSF will produce what we need.
It took a considerable amount of time for Jalen to come out of the fog of all the meds he'd been given. He would have small moments of rambling and crying fits.  I was really concerned because he just could not be roused out of it.  Eventually (3.5 hours later) he started responding to questions with clarity and snapping out of it.  He hadn't eaten in over 17 hours and was very hungry, but still tired.  Shortly after that he asked for snacks and more juice and I could see he was really returning to himself.  He told me he was ready to go home, to which I replied we still have a little more work to do to complete the process and we would be able to go home tomorrow.

Mireya had a difficult night.  Severe headaches and fever plagued her through the evening. Blood cultures were taken to ensure there is no underlying infection and an antibiotic has been added to her arsenal of medications. The Medical team believes it's the ATG that is making her ill.  Mireya tolerated her last round of chemo and her ATG schedule as been drawn out to hopefully eliminate some of the issues she had last night.  So far, those modifications seem to be working.   

Having two kids in the hospital at the same time is a lot.  We're so thankful for our family and friends for all you do to make this easier for us.  Tomorrow is another big day to give and receive.  Please continue to pray for Jalen, Mireya and #TeamBolton.  Your love, encouragement, support and kind gestures are a tremendous blessing to us.  This truly is a new beginning, but we are counting down the days, weeks, months and year to total victory over this illness.