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 faith...it'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!   

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.  

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.

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!

Holding On with Faith

This past week was rough.  Reya's platelets were shot and she had to get her first platelet transfusion since July of last year.  Based on the amount of bruising she has had, I thought she might need them. The optimism her medical team had is waning.  Having her counts so low was really a blow to recent suggestions that her body was making a turn around, but we've remained prayerful and hopeful.

One thing we discussed with the Medical team was Mireya's Tacrilimus medication.  The prescription we received just prior to our trip seemed to be a very concentrated formulation.  It was apparent because of the sediment at the bottom of the bottle and it took a lot for us to keep it mixed.  It was a pain, but we noticed that her counts for that two week period were at the highest they had ever been all the way across the board.  When we returned, we had to get a new prescription of the Tac and her levels over the last few weeks have not been good.  In our minds, the only difference has been the medication.  So I called Westbury Pharmacy to 'share' our theory. Long story short, there are two ways to make the medication.   It is either compounded with tacrilimus powder or the actual tacrilimus capsules.  Based on my description the Pharmacist believes the bottle we had in Florida was mixed with capsules, which is not the preferred way to compound it because it requires a lot more work and steps to make. After checking the computer it was confirmed the medication we had while away was made with capsules, and every other time it's been made with the powder.  Imagine that, God is still revealing possible answers and solutions to that which cannot be figured out by the Specialists and Physicians.  So I asked them to humor me and make a bottle with capsules for Mireya, because we only have about 10 days to see a change in her counts or we would be facing another Bone Marrow Transplant.  The Pharmacist 'sounded' skeptical, but wanted to do whatever would make us happy.  She said 'We're the Pharmacist and our preference is to make it with powder, but Momma knows best'.  I'm having visions of Mother Gothel singing her jingle on Tangled.

We immediately started taking the new Tac anxiously awaiting our upcoming appointment to see if there would be any improvement.  We arrived in clinic and it was a matter of fact meeting of the minds.  I thought we had about 4-5 more good days, but yesterday was D-Day. Reya's counts would determine if a second transplant was necessary via this boost.  We talked about the Bolton theory of medicine.  The Head of Hemoc took a few minutes to politely listen and consider the probability of the 'mixture' being an issue, but she doubted it was a factor.  We're all on the same page.  No more time can be wasted. We cannot allow Mireya to dwell in this space any longer.  This 'boost' which up until this point has been a very casually discussed process was explained full spectrum and is 'on deck' as our next option.  It will entail a lot more than I understood initially.

Jalen's cells would be accessed through his blood as opposed to the bone marrow which will require him to have a port or a pic line inserted for the duration of time his blood is accessed (approximately 2 hours or more). It would be surgically inserted that morning and possibly removed the same day if all goes as planned.  Otherwise it will be left until it is deemed the boost was a success. I was of the impression Mireya would not have to undergo chemo, but this procedure will require some dosing of chemotherapy.  We will need to be on the Bone Marrow Unit for about 7-10 days.  This is a lot better than several weeks, but again my original expectation was very different than this newly painted picture.  You cross each bridge as you need to...perhaps in my mind and heart I wanted it to be a simpler process with less of an impact all the way around.  We're fighting for my girls life and we'll do and go through all that is necessary for that to happen.

The first count to come back was Mireya's platelets and they were up. Immediately there was bewilderment at how her platelets had increased, especially since she received a transfusion last week.  Platelets only last for about 7 days.  We were past that time frame, which means her body is making them and they have increased in one week's time by eight thousand.  About fifteen minutes later her other counts showed up.  There was a small drop in her red cell count, but other than that, all the other counts are up.  The TAC level almost doubled.  All I can say is God will work it out.  Don't ever count yourself out, even when it 'feels' like your hanging from the last rung of the ladder and your feet are dangling in the wind.  Trust your instinct, intuition or what we know as the soft, nudging, persistent voice of the Holy Spirit to draw our attention to the answer or what was not obvious.  The Department Head came to me before we left to tell me that we really have given her a new way to look at things and that given a similar situation she would definitely look at 'how' the medication is compounded because it could be a determining factor for another patient.  Thank you Lord.  Even in the midst of our situation, being armed with what seems to be a small thing could be so helpful to someone else.

Thank you for another victory!  Thank you for another week!  We trust and believe that Mireya's body will continue to create and increase in counts. We're looking forward to next week's visit and expecting another praise report.  Continue to pray for our family and for our sweet Warrior Princess.  We're still standing on the word of God.

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

Turning Around

We've been in clinic twice this week for counts and results of Mireya's bone marrow biopsy.  On Monday her counts showed a small improvement.  The information on hand from her biopsy showed all three of her cell lines present along with the cells of origination (mother cells) which is a really good sign.  The final report would show us the make up of those cells either boy (Jalen) or girl (Mireya) and hopefully give us an indication of what or where the issus lies.  Mireya's white count increased and her hemoglobin has held steady. Her platelets have continued to go down, but at a slower pace which tells us her body is making them.  This was very encouraging because we expected the possibility of a platelet transfusion. We hope to avoid any transfusions if possible, because as the body receives transfusions, it takes on the genetic makeup of the blood or platelet product and can cause issues should another transplant or a 'boost' need to take place.  We left clinic with favorable news, one step closer to figuring out this puzzle.

In today's appointment, we received the final report from pathology which showed favorable percentages of Mireya's cellular makeup.  All her counts were up, even the platelets which is typically one of the last lines to rebound.  Prayerfully they will continue to increase.  There are a few theories as to why this has occurred, it could be that Mireya was taken off the Tacrilimus prematurely. Tacrilimus is also one of the most toxic medications in Mireya's regimen and we were quite pleased when she was able to come off of it. Tac has been used to suppress Reya's immune system post transplant. She has been doing exceptionally well up until this point and there was no indication that taking her off of it would suddenly cause the small percentage of her original cells (girl) to destroy everything it deemed 'foreign' or as bad in her system.  Wow, even on a cellular level, girls don't go down without a fight.  So this is the one instance where I'm denying GIRL POWER and I'm cheering on the boys.  C'mon boys you can do it, put a little power to it! Go team Jalen!

Another thought is she contracted an unknown and undetected virus that her anti-viral meds are not equipped to address and as a result her body identified those cells as a threat and in turn started destroying all cells?  So we continue to try and figure out what has caused stress to her bone marrow to the point that it stopped functioning optimally.  We also discussed how similar instances have occurred in other patients when Tacrilimus has been removed or decreased.  It is a fine balance of timing and dosing, so Mireya will be monitored via labs and counts more frequently, but it appears her body is working to recover.  Thank you Lord!  Additional tests were run today to identify any possible viruses not detected previously.  There has been less bruising and petechaie present and that is also a good indication of a turn around.  God will turn it around for the good! We are believing Mireya's health is increasing and her body is repairing itself.  We're still standing on Phillipians 1:6, and we know that everything is working together for our good.  Thank you for continuing to keep her and our family in your thoughts and prayers.

God is Sovereign and is faithful to complete every good work he has started. 

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.