Challenging Week

Mireya was not feeling her best earlier this week.  Her energy level was low and all she wanted to do was rest. I took her temperature and it was at 99.3.  Not high enough for major concern, but something to keep an eye on.  I made a few decisions over the last week, allowing Mireya to participate in some group based activities. I want to believe she didn't pick up anything as a result.   Regret and guilt all wrapped in one...sounds a bit harsh, but the last time I 'decided' to let Mireya do something similar, we were presented with fever and a hospital stay.  Isolation really is no fun and over the last few months with the highs and lows of her counts, I've been so cautious about what we do and where we do it.  It's hard, but times like these I wish we could just live in the bubble, protecting her from all the things that 'could' potentially wreck havoc on her body, but that is not reality.  Some things I can control, others I cannot.  My name is Venus Bolton and I have a daughter that is immune suppressed and fighting to get well. Is there a club for this?  Yes, it's called LIFE...ok enough sarcasim and self-doubt. 

Later in the day, Mireya started complaining and crying because her head and stomach were hurting.  When I checked her temperature, it was up a bit 100.2 just below the threshold that would require us to go to hospital. I called Hemoc to make them aware of what was going on.  The Nursing staff was going to speak with the Docs and let me know if she should come in.  They called back within about 15 minutes and her fever had risen to 101.3.  There was no question at that point, we needed to pack a bag and head down to the ER.   I gave her a dose of Tylenol and posted a quick message on our Facebook page and Community Group to solicit prayers as we journeyed down the road.

When we arrived, we went through the cursory regimen.  Counts, checks, IV fluids and medical history and happenings.  When Mireya's temperature was taken, she did not have a fever. That fever was no match for the power of prayer and the practical/physical application of good ole' Tylenol.  A winning combination of spiritual and physical/practical applications working together for the good (trust me Tylenol has never reacted so quickly to a high fever on its own). Her counts came back really low, which was very disappointing after last weeks increase.  She would need platelets, but the additional test did not show anything of concern and we were scheduled to be discharged. The attending Nurse checked Reya's temperature before we left and it was 102, which concerned me.  I pushed the issue and challenged the call, but we were still discharged.  The general census amongst the staff was we should be covered overnight since we received the IV antibiotic and had an appointment in clinic the following morning. I didn't necessarily agree but after 6 hours of sitting in limbo, going home was a welcome option and we would deal with whatever else came in the morning.

Mireya's fever persisted overnight and she also began to have tremors as the fever spiked.  She had a low grade fever when we arrived at clinic but it quickly increased 101.8 shortly thereafter.  Reya's medical team was concerned particularly with the presence of tremors.  Tremors can be associated with infection.  There was also question as to why she was released the night before? Mireya needed a platelet transfusion, but we would have to wait until her fever subsided because one of the signs of problems during transfusion is an elevated temperature.  It would be difficult to determine if Reya was having a reaction or issue due to the transfusion because of her fever.  So we waited for the fever to go down and then administered the platelets without issue.  The decision was made to have Mireya admitted so she could be monitored more closely.

Day 3 and Mireya is doing better.  Weight loss has been a concern, but her appetite and energy level have started to return. The Nutritional Specialist visited with us and has added some additional snack options to help boost her weight.  A strain of bacteria was found in her bloodwork yesterday, as a result she was placed on a more powerful antibiotic. Reya's fever has diminished, but we want to watch the progression of the bacteria on her lab to determine if she will need IV or oral meds when she is able to go home.  We are hoping that will be tomorrow.  Reya's counts continue to be suspect, but some of that is to be expected as her body fights through this infection.  The hospital Pharmacy administered Tacrilimus to Mireya the first day we were here and the level was not very high.  We brought our capsule based Tac to the hosptial for Pharmacy clearance and approval and after just one dose of that prescription, her Tac level was up to 10.  That theory remains intact.  We'll wait out the day and hope Mireya continues to progress without issue so we can go home.

Child Life (we love Child Life), the staff, along with the Hospital's Education Program and ASK Outreach have been so wonderful to us.  The activities, resources and familiar faces truly make our time here more enjoyable and bearable.  Seeing Mireya's smile return has been priceless.  Thank you for your thoughts, prayers and messages/posts of love. It is truly uplifting.  Words will never express our gratitude and how much we appreciate your support and encouragement.  We are thankful to have loving, caring and thoughtful friends/family cheering us on and praying us through.  God Bless you all!

A Day of Support for CMN

The Bolton Family was contacted to participate as 'Celebrity Baggers' at a local Walmart to support the Children's Miracle Network.  Many of you remember we participated in the Radio-Thon for Children's Hospital of Richmond last year.  This year Walmart has partnered with Children's Miracle Network and a challenge was issued to area stores to add some fun to their efforts of raising money. The store that raised the most money over the last week, would have 'Celebrity Baggers' come in to allow the community to 'see' the difference they are making in the lives of who they consider their celebrities...the children and families receiving care at Children's Hosptial of Richmond (CHOR).

The Brook Road Walmart was named the winner of the challenge.  Ms. Virginia was also invited to participate in the event.  Unfortunately, there was a conflict with another previously scheduled appearance, but have no fear, the Ms. Chesterfield Princess program was in full effect. It doesn't hurt that Mireya is a patient and a Princess...have crown, will travel.  Thank you to Linda Thomas (Director, Ms. Chesterfield Princess Program) and her son, Corbin Thomas for coming out and being celebrities with us for our fifteen minutes of love and fame.  Ms. Chesterfield is a part of the Ms.Virginia/Ms. America organization and we made sure they were well represented by our program. The Children's Miracle Network is the charity of choice for the Ms. America organization, so it was a perfect pairing.

We had an awesome time serving cake, bagging groceries and thanking customers and employees for all their work and contributions.  I believe it's very meaningful to see how your donations are making a difference in the lives of others. We also had the opportunity to meet another local family of celebs.  People were touched by our presence and literally started handing us donations.  It was amazing.  One young lady inquired about which of my children was in treatment? I shared Jalen and Mireya's story and how CHOR has been such a blessing to us over this last year. Minutes later she came back to ask if we were taking donations and told me she was going to find some money to give. When she came back and handed me her donation, we embraced and she began to sing.  People around us stood in their tracks as she poured words of encouragement, blessing, and victory over Mireya and our family.  I will never forget this encounter.  Thinking about it brings tears back to my eyes, it is one of the most beautiful things I've experienced during this journey. The Lord sent a beautiful, sweet, angelic voice to profess his goodness for everyone to witness. She told me as she listened to me talking about Mireya & Jalen and how the Lord had been moving in our lives, she was moved and it stirred something up in her.  WOW...clean up on Aisle 29, someone please pass the tissues.  It took a minute before I could really get myself together.  That was such a God moment.  It blessed me beyond words.  I don't know her name, I may never see her again, but I thank her for the boldness she had to come forth and be a blessing to me.  I thank God for that outward sign of encouragement and love.

The children enjoyed sticker and candy duty, especially Ms. Sweet Tooth Makinley.  I can assure you for every Lifesaver she handed out, she ate one (the old one for you, two for me trick). The hour went by so fast. I could have stayed for another hour or maybe longer, well at least until the stickers and candy ran out.  The time we spent among those who gave large and small was wonderful.  Walmart has raised over 30 million dollars in one month for the Childrens Miracle Network. Our local area stores have raised close to $200,000 within that same time frame.  In addition to Walmart, Sam's Club, Food Lion and Rite Aid also have campaigns starting in the area.  If you frequent any of these stores consider a donation while checking out to make a difference in the life of a child and his or her family.  God Bless you all and 'Thank You' to the Children's Miracle Network and our local Children's Hospital.

Bone Marrow Biopsy

During our visit to the clinic this week, Mireya's counts remained virtually the same.  There was a slight reduction in her hemoglobin and a small rise in her white count, but relatively speaking they were hovering at the same mark.  For now she has been placed back on several of her medications.  It was a very long day and the bone marrow biopsy was quite an ordeal.  We were asked to arrive at 8:30am, but the procedure did not start until almost 1pm.  I was unhappy about the lapse in time because Mireya had not eaten anything since the previous night and could not eat or drink anything until the conclusion of the procedure.  So most of that time was spent waiting and creatively finding ways around Mireya's request for food.

It has been a long time since we've been in the Fishbowl.  We started out in the Fishbowl for counts and 'the cream'.  I say it that way because in the past I've seen the Nurses ask specific children if they wanted 'the cream' prior to their labs being drawn.  'The cream' is basically a small piece of gauze slathered with a numbing solution which is then taped to the area that will be saying 'hello to my little friend the needle.'  It immediately clicked that 'the cream' is offered to kids with ports (which is beneath the skin), prior to their ports being accessed. Mireya has the double lumen hickman, so we never had to received 'the cream' until now to help numb her hip. 

I can't imagine how a numbing cream applied at 9am lasted or made a difference at 1pm, but I'm happy that Mireya was anesthetized for the procedure.  By the time Anesthesia arrived, got set up and the Medical team and Chaplain was assembled, we were about seven strong physically in the room.  Mireya was out in less than a minute.  I watched them begin to pull out all the instruments to perform an aspiration of the marrow as well as the removal of a bone chip.  All I could do was close my eyes, bow my head and pray.  I was about a minute into my prayer when the Chaplain whispered in my ear that he wanted to take a moment to pray with me.  We sat in agreement and silently asked the Lord to oversee everything going on in the room.  At that point the 8th was in the space and I was able to let go of my uneasiness.

When Mireya had a bone marrow biopsy done close to a year ago, we were asked to leave and come back in about an hour.  I didn't understand it then, but I do now.  I glanced over as they were trying to get the bone chip and it looked like they were attempting to saw down a tree.  I'm the type of person that 'feels' things even if/when they are not happening to me.  It was as if they were drilling down into my hip.  I just wanted it to be over.  Most of you know that Mireya barely has a hip bone and it just pained me to watch them going for it with such intensity.  It took two attempts by two different physicians to get the sample.  Somewhere through all that grinding, someone attempted to lighten the mood by otherwise engaging our minds and we started talking about Sweet Frog.  I did not realize Sweet Frog is a Christian business and FROG stands for Fully Relying on God.   Who knew?  I had not heard this before, but that's awesome. We've visited Sweet Frog quite a few times over the last few weeks.  I've been having a lot of Fully Relying on God moments.  Sweet Frog has been a treat, a reward, and a anything else we could categorize it as (anything but a stressful eating indulgence).  All bets were in that Mireya definitely deserved a trip to Sweet Frog after enduring this procedure and so did Mommy for having to witness it!

The team finally completed the biopsy close to 2pm. We were allowed to leave once Mireya woke up and bounced back.  Within about 15 minutes, she opened her eyes, yawned and stretched as if nothing had happened.  It was apparent that her hip was very sore as she continuously reached for it.  A few rotations of Tylenol really helped to ease the pain.

So for now we wait..did I mention waiting is over-rated.  As the saying goes, good things come to those that wait, but the bible encourages us in Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.  Continuing to put all my faith and trust in the Lord for my strength and to see us through victoriously.

Highs and Lows

We've spent the last few days in and out of clinic to determine why Mireya's platelets have taken a nose dive and she has started having petechiae and bruising on her body....a moment of silence and deep breaths are needed here because seeing this hit us like a ton of bricks.  We had not imagined after what has been deemed a successful bone marrow transplant, that we would see the signs that started us on this journey eleven months ago.

This is also puzzling to our medical team. The best we can imagine is a virus of some sort is destroying her platelets.  Mireya's platelet count has declined over the last few visits, but have remained in a healthy range.  At one point they were 375k and they are now 50k.  50k is better than the 15k and lower that required the continual platelet transfusions, but platelets can be depleted quickly and we're uncertain of when this steadier decline began. Counts have been checked, tests have been initiated and Reya will have to undergo a bone marrow biopsy (for which she will be anesthesized) next week.  The bone marrow biopsy will be done to evaluate the bone marrow function.  It will also evaluate the effectiveness of her meds and assist in determining the reason behind the low platelet count.

Chimerism testing (engraftment analysis) is also being conducted. This test involves identifying the cellular make up of Reya's system.  This is a very significant test that essentially will show boy, girl or a mix of both. Our prayer is boy will be prevalent which would be target since Jalen was the donor. Girl would indicate Mireya's cells are wrecking shop on the success of the transplant.  A mix of boy and girl would be acceptable and can exist successfully as long as there is a higher percentage of boy.  There are a few ways to look at it medically, but the answers will come after the results of all these test are compiled and we know exactly what is going on.  A full reconstitution of the immune system following a transplant can take up to 19 months.  We are over halfway there.  For now, Mireya has been placed back on several of her medications.  We're unsure if she actually needs them, but the team would rather have them in place to support her system as opposed to waiting until next week and determining we've wasted several days by not doing so sooner.

I'm a pretty patient person, but waiting for test results challenges my patience and resolve.  On the plus side projects have been moved along, things have been organized/reorganized and my house is super clean.  Anyone else move into 'git r done' mode while feeling helpless as you wait?  You have to do something with those emotions and thoughts that try to consume you.  May as well be productive and exhaust yourself in the process.  The Drs. mentioned a plus we have on our side is 'we still have Jalen'.  We know of several instances where sibling donor transplants have failed, but it is usually identified soon after the transplant.  Jalen is a perfect donor match for his sister should we have to go that route.  Despite having gone through it already and knowing all the variables, we DO NOT want Jalen, Mireya or our family to have to go through this part of the process again.

God is STILL working this out. We've been shaken, but remain grounded in our faith. I don't believe we've come this far (by faith) and with such success for this to fall apart. There is power in prayer and we thank you for your positive thoughts and prayers as we wait and continue to trust the Lord.

God is Sovereign and is faithful to complete every good work he has started. Philippians 1:6

Glory Glory

We were in clinic today and Mireya was taken off of all medications.  In my best Fred Hammond voice I shout 'Glory, to Glory, to Glory to God'.  This is such a triumphant moment. Her white count had an incredible high a few weeks ago as we tapered her off the Tacrolimus.  It has since dipped considerably lower, but still remains within reach of a low norm.  Overall, her counts are favorable and not of major concern because she is doing so well.  We are looking forward to getting out of this season of colds, viruses and bugs, so we are still very mindful of what and where we do things, but today was a huge milestone.  We've been upgraded to a monthly clinic visit and that is super exciting.  I must admit as my daily medicine reminders went off it felt odd, yet awesome to 'dismiss' them and then promptly delete them.  God answers prayers!!!

Mireya's health continues to increase and we are optimistic and prayerful that it will continue to do so.   Next on the agenda is removing the Hickman Line.  The plan is to give her body a few months to adjust and stabilize, particularly the white count and we'll schedule the procedure to have the line removed. Thank you for your prayers and thank you Lord for touching and healing Mireya's body.

We continue to pray and trust God for our friends and children everywhere battling illness, enduring treatment and incredible odds.  Precious lives are hanging in the balance.  It is impossible to predict how things will turn out or to have someone tell you based on their experience or opinion (medically or otherwise) what the outcome will be....keep fighting, keep trusting, keep believing and know there is power in prayer. 

A Familiar Place Leads Back to Grace

I could tell that Mireya was not feeling her best today, she sounded stuffy and had a bit of a runny nose.  Overnight she got up, because she was hot, and jumped in the bed with us.  She felt a bit warm, but her temperature was normal.  Today she's been a bit out of sorts and very fatigued.  It is not uncommon for her to take a nap, but today she stayed in the bed for several hours and when she woke up she complained that her throat and head were both hurting.  I took her temperature and she had a low grade fever.  I know how these things can shift on a dime and it's normally on a Friday about five minutes before the office is closing for the weekend, so I decided to call the pediatrician's office to have her seen.  Typically I also call Hemoc to keep them abreast of any concerns or issues with Mireya's health, and they have been working together to ensure Mireya's care is well managed between both offices. After speaking with the medical team at Hemo Clinic, we were asked to take Mireya to the Emergency Room.  The biggest concern was that she had just come off of an antibiotic days ago and really should not be exhibiting signs of an infection.  Her fever was just below the threshold of 100.4, but they wanted to take labs and ensure we were not dealing with any issues associated with her line.

We've not been down to the VCU E/R since just before Mireya's transplant and as a result we were there for about 24 days.  I told Mireya we were going to the hospital's Emergency Room and in that moment, she very calmly told me I needed to pack her some pajamas and make sure I had an outfit for her in the morning. She also asked me what room she was going to live in.  I laughed to myself because she easily went back to our 'routine', but it also made me a bit sad that the 'routine' was so engrained in her mind.  I didn't think we needed to be concerned about an overnight stay, but I pulled together out hosptial bag anyway.  We used to keep that thing packed, so we could just add a few essentials and hit the road when instructed.  It seemed like everyone had a 'moment' of reliving the impact of Reya's illness over this last year.  Jalen was concerned for his sister and curious as to when she would be back.  Tears filled Makinley's eyes as she asked me not to leave her. We are at VCU Children's Hospital in clinic, several times a month, but this ride felt different.  I started to have feelings of anxiety thinking back to the many times we made this trek and all the nights we stayed there waiting and wondering.   Each time we arrived  we were admitted, but I knew this time would be different.  She probably had a cold or virus and once they saw her we'd be examined and on our way home.

When we arrived it looked like there was a convention for sick children going on. I'd never seen so many people there. Fortunately they were expecting us so we were taken back to a room as soon as we arrived.  The intake coordinator told me whatever you do, don't take that mask off of her. Tis the season.  It's that time of year that breeds, coughs, colds and infections that can very easily become 'more than you bargained for' madness.   We did all the preliminary tests, cultures, checks and balances.  I had given Mireya Tylenol before we left, so she was no longer registering a temperature.  Negative for strep, no fever, counts look consistent to where they were when we were last in clinic.  I had not heard Mireya cough in over a week.  When the Dr. asked about a cough the answer was no, but within minutes of us being there, out of nowhere she begins with a pretty rough sounding cough.  A chest x-ray was ordered and it showed a pretty significant lung infection.  What I heard was 'infection in her line' and I was immediately devastated.  I'm the one that primarily does her dressing changes and line care.  I was so upset that somehow a infection was introduced through her line.  It is not uncommon that a infection can occur in the line, but we've avoided any issues for over 9 months now.  Roll back the tape...oh you said 'infection in her lung' ok I can now lay aside my guilt, but what does this mean?  It meant we would likely be admitted to the hospital so Mireya could be treated with antibiotics via her line and be monitored for progress.  We had been there for several hours before Mireya asked to put on her pajamas.  The attending physician did his assessment and expressed surprise that Mireya was not more visibly ill or on edge based on how the x-ray looked.  They administered the first dose of her antibiotic and within minutes she starting hollering that she was itching.  We'd had this experience while on the Transplant Unit.  They quickly gave her a dose of Benadryl intravenously and within about 10 minutes she was resting peacefully.  Through the night, Quentin and I did the 'wonder #TeamBolton powers activate' switchroo.  Jalen and Makinley were super excited to see Mommy at home the next morning. 

Mireya was moved up to the 7th floor for treatment.  Once they realized she was post transplant, they were a few order changes to ensure she was not on the Main Floor with so many sick little ones and that she was not sharing a room or bathroom.  A few of the Nurses and Care Partners remembered Mireya's sweet face.  They had to connect the diagnosis and chemotherapy dots when didn't see all that hair I was usually brushing or pulling back, but were happy to know that she had been doing well overall since we were last there.  Child Life stopped by, remembering that Mireya loved everything princess, they brought her a doll and some awesome activities to do while she was there.  I heart the Child Life Center.  They bring smiles to the faces of so many children whether they are there for the short or longer term.  During rounds we discussed plans with the Hemoc team for Mireya.  She has been placed on a super nuclear antibiotic and if there was no fever within 24 hours she could be discharged.  The fever never resurfaced, but I thank the Lord for that slight elevation in temperature because overall, that was the indicator of the underlying issue. One of the greatest exchanges during that conversation was that Mireya is cured!!!  There is no evidence of Aplastic Anemia and at this point she is simply being treated as a transplant patient.  Glory to Glory to Glory to God.  We'll continue the course of care for the next five months at which time we should be released from care and only have to come back annually to complete bloodwork and counts. 

 

The Nurses remarked on how awesome and easy Mireya is as a patient.  We've heard this many times before and we've said it before, God knew which child had the strength to bear this.  Despite the circumstances and not feeling her best some days, she's still manages to be a joy.  We found ourselves back in a familiar situation, but you can't keep a Warrior Princess down and you can't keep a family prayed for my many, solely relying on the will of God down either.  God's love and grace continues to keep us.  The prayers of the righteous are powerful and effective.  Thank you for your continued thoughts and prayers.

Day 50

Another day of great counts. Mireya's white blood count has almost doubled, her red count is above normal and platelets are through the roof. Thank you Father for increase!!! The Doctors are so pleased with Mireya's progress. She looks great, has tons of energy and with these types of numbers you'd believe she is further along in the process, but we still have so much to be mindful of. 50 more days and we're on a new wave of freedom. Her meds are still being tweaked. There are a couple of counts we'd like to see in a more comfortable range. That pesky cough has progressed and caused a bit of a stir with her physicians. Reya had to get a chest x-ray today to rule out pneumonia, and she was given an additional antibiotic as a precaution.

She has been on a medication for a few weeks that helps to diminish the possibility of pneumonia but it has been making her sick and she's been dealing with some of the less pleasant side effects of that drug. We will be going in later this week for a pulmonary treatment that can be scheduled once a month with a pulmonary therapist. After speaking with the therapist about how the medication is administered, it could be tricky, but we'll give it a try and pray that it gives us greater results physically. We'll monitor this cough and continue to look out for other markers for issues, but Reya is doing better than great! Her doctors said if the counts continue to rise at this rate we can be seen even less in the clinic.

School will be starting next week, we had hoped that the girls would be going to a preschool program together a few days a week. Unfortunately Mireya cannot go to school for the period of one year post transplant. To avoid any issues we've made the decision to keep Makinley home as well. Jalen being back in school (and exposed to pretty much everything) is definitely something we'll have to stay on top of. We are so excited that ASK has a dedicated preschool program for the kids of Hemoc. The program is one day a week and includes siblings. ASK recognizes the need for supportive programs for young children whose preschool or kindergarten experience has been postponed or interrupted during medical treatment. First STEP offers an individualized early childhood educational program for ASK Pediatric Hematology/Oncology Clinic patients and families. First STEP is designed to meet the unique educational, social and emotional needs of young children with chronic illnesses as they go through the process of healing. This program is provided though the partnership with First Baptist Weekday School. I'm really happy the girls will have this opportunity for socialization, learning and fun.