Second Time Around

This weeks appointment was a tough one.  We've been holding out for Mireya's body to make a turn around, but an additional chimerism test and the downward trending of her counts show her graft is failing. We were hoping to avoid a second transplant, but the next step is the DLI (Donor Lymphocyte Infusion) or Boost transplant.  We are exactly 6 days away from what is medically considered Mireya's ''new birthday', when she received her bone marrow transplant last year.  It's a hard pill to swallow because up until a few months ago we were having incredible success. The blessing is we still have our Super Hero, Big Brother Donor Jalen.

Please, please, please pray for Jalen.  He has spent many days questioning if his sister is going to be alright. He is extremely anxious at the thought of having to go through another medical procedure to help Mireya.  The DLI will require more for Jalen than the original transplant.  Jalen has a great disdain for needles.  I don't know many people who aren't disturbed to some degree when having someone insert a needle in their body.  Jalen had a bad medical experience after running into a pole when he was 5.  He ended up needing several stitches about an inch below his eye.  He was afraid and very uncooperative.  He ended up being papoosed (basically wrapped up like a mummy) and restrained by two grown men as they closed up the gash.  He cried, I cried and that experience alone gives him great anxiety in medical settings.  Going to the dentist for a simple checkup has caused him to hyperventilate when just having his teeth counted.  Sedation is going to be key in making this less traumatic for him.  He was sedated prior to the transplant and did exceptionally well.  We're doing our best to help calm his fears.  We'll be working with the Psychology division of the clinic for some positive reinforcement and creative angles to assist us too.  My boy is long and lean, but he is bull strong.  Couple that with anxiety and adrenaline and it won't be cute if we're not able to calm and relax him prior to these events. 
 
Jalen will have to take the same growth hormone (GCSF) as his sister to help build his cell counts in preparation for the boost.  His cells will be accessed via his blood as opposed to his bone marrow.  The team will have to determine when Jalen's cells are at their peak and the procedure for harvesting his cells will take place.  The GCSF and determining the peak time to harvest his cells will be done via injections and by drawing labs...in other words needles.  Harvesting his cells will require a port to be placed in his chest so that his blood can be accessed for several hours as needed.  The goal is to collect about 10 million cells.  Additional cells will be collected and frozen should we need them in the future.  Jalen will  have to be hospitalized for this part of the process.  The port will be removed prayerfully the same day, provided everything goes as planned.

We met with the Transplant Coordinator who was one of the Nurses we had on the Bone Marrow Unit last year.  It was good to see and work with a familiar face as we walked through the preliminary steps of the transplant procedure.  Mireya will receive chemo, but it will not be as extensive as last year.  Our stay on the Bone Marrow Unit will hopefully only be about ten days or so.  We are believing it will not take long for Mireya's body to show success based on its familiarity with Jalen's cells.  We found a similar case of a young lady diagnosed with Severe Aplastic Anemia.  She was taken off her medications about the same time frame as Mireya and had a late graft failure following an otherwise successful transplant.  She received a DLI and it took about 4 weeks to see the success of the transplant.  She has not had any issues since receiving the boost.

There is a greater risk of Graft vs. Host Disease (GVHD) following this type of transplant.  We had no issues with GVHD during our first transplant, and we are truly believing and asking for prayers that we will not have any issues or signs of GVHD this time.  We're praying for a swift engraftment and successful and harmonious results. Mireya will be immune suppressed, so we'll have to deal with another '100 days' and isolation.  The DLI may not be handled as strictly, but it will also not be addressed lackadaisically either. We'll have to take it a day, a week, and a month at a time to see and monitor Mireya's progress.  Mireya has definitely been looking forward to going to school.  This timing will likely affect her ability to do so. The hard rule is no school for one year post transplant.  Children's Hospital has a great home bound program and we'll be working with the Educational Specialist to ensure Mireya is on track as needed.

We've decided to handle Jalen and Mireya's procedures separately.  He will be hospitalized for his procedure where we both can be there to support and love him through it. We didn't have this choice during the bone marrow transplant.  Both had to be done at the same time, so I was not able to be with Jalen as he went through this last year, and Quentin wasn't able to be with Mireya because he had to take Jalen home and care for him. Once the harvesting is complete, Mireya will be hospitalized for the transplant.  We are about two weeks out from starting this process.  Although we've been down this road before and have a pretty good idea of what to expect, there are many variables involved.  Thank you for your prayers, encouragement and support.  It helps to lift our spirits and it fills our hearts with gladness to be covered in prayer and surrounded by so much love.  We are trusting God for victory for our sweet girl and praying for peace and comfort for Jalen in times where he is troubled.  God answers prayers and will continue to show himself mighty through it all.

Teamwork Makes the Dream Work

Mireya was discharged from the hospital over the weekend.  There was so much going on 'in the midst' of this hospitalization.  We received a call from the Head of Peds Hemoc to discuss Mireya's positive blood cultures and the medical implications.  What she did not realize is we were admitted by another team member and had been in the hospital for two days already.  She was not sure 'why' we were sitting in a hospital waiting for cultures to grow or to coincide with those taken in clinic last week, especially since Mireya was not sick and had no fever.  At this point we're very heated, couple that with the madness from the day before, there is fury.  The lack of cohesion and communication within the team was exposed.  It made us question authority, but it was also important for her to understand how this gap in connectivity negatively affected us across the board.  It's not acceptable.  The final conclusion of Mireya's testing did not show any infection.  Thank you Lord!  Staph and MRSA are heavy hitting infections that can take you down quickly.  It is believed Mireya's labs were contaminated by the person(s) that took/handled her labs that day.  This is also very unsettling. Mistakes happen, but unfortunately it's a costly mistake to our personal bottom line.  Who should we send this series of hospital bills to?  I appreciate the care and caution, otherwise I'd probably be hollering from the rooftop that not enough care was being given.  I just hate that we spent several days in the hospital for something that could have been addressed while we were at home.

Mireya's hemoglobin really took a hit this week.  Her counts were extremely low and required her to receive a blood transfusion.  We're glad to be home and have this week behind us.  Mireya's energy level has increased and she is continuing to do well despite the obvious 'war of the cells' in her body.  We'll discuss preparations for the boost at our appointment this week.  Our faith in the team has been shaken a bit this week, but our faith in God remains fully intact.  He will see us through.  This turn of events hopefully allowed our team to 'feel' our frustration (not wrath) and understand the need for more effective inter-team communication and decision making.  We know we're in very capable medical hands and overall everyone is working to do what is best for Mireya...continue to keep us and everyone involved in this process in your prayers.

TEAMS ~ Together Everyone Achieves More Success!

Midnight Fiasco

Mireya is doing well.  The results of her blood culture will take at least 48 hours.  She continues to get rounds of fluids and antibiotics.  In the past, Mireya has had a reaction to one of the antibiotics and requires pre-treatment with Benydryl.  Benydryl tends to make her tired, so she was able to rest pretty well through the night.  Our nurse came in to ask me about Mireya's Hickman Catheter.  She said notes from the ER stated they 'accessed Mireya's port' which confused her because she knew Mireya had a Hickman Catheter.  Within about ten minutes, I was greeted by two very concerned doctors explaining to me a serious mishap that occurred while we were in the ER.

The ER staff gave Mireya one dose of her antibiotic and noted it was administered through her port (a port is a line accessible under the skin).  When lines are accessed they need to be flushed and heparinized.  Heparin is a blood thinner used in varying quantities to prevent clotting in the line.  I specifically had to correct two doctors and one of our nurses because they kept referring to her hickman as a port.  Our ER nurse asked me how much heparin we used at home?   I gave her the amount per line and she flushed Reya before we were sent up to the Main Hospital.

The type of line you have determines the amount and concentration of heparin received.  Mireya was mistakenly given a higher concentration of Heparin and double the dose she should have received.  I was mortified and infuriated...so basically your telling me I'm having a Dennis Quaid moment?  If you don't recall the story when Dennis Quaid's twins were born, they were given lethal doses of heparin in a California hospital.  The Quaid's ordeal was due to a similar issue with administering doses of the incorrect concentration of heparin.  A report has been initiated downstairs to investigate how this occurred.  Both of the doctors were very apologetic and equally concerned about the serious medical implications this had for Mireya. 

Mireya's platelets are very low. Platelets are responsible for clotting the blood. The major issue with low platelets is falls or hitting the head and having a bleed situation where the body is not able to clot the blood appropriately.  Mireya's platelets had to be rechecked and her blood clotting functionality measured. The Doctors were uneasy and urged for an immediate transfusion to boost her platelet count. We were trying to hold off on all transfusions unless absolutely necessary.  The results of the test showed her platelets had decreased by 4k.  At that point a transfusion was inevitable.  I was surprised her platelets were wiped out at that rate in such a short period of time.  Her blood clotting functionality was okay and it did not appear that she would have any adverse affects.

I thank God for his hand of protection and for our Nurse who recognized the inconsistency of notes and the actual situation.  I know there is so much going on down in the ER, but this incident could have been avoided.  It's a lesson for everyone, one I talk myself through some days....stop and focus on the task at hand so we can give our full attention to what is before us, instead of already mentally being in the next place. Thank you Lord that our Warrior Princess slept like 'Sleeping Beauty' through it all and she woke up ready to face another day with a beautiful smile on her face.

We're Back

Our appointment this week was disappointing. Reya is on the line for receiving platelets and a blood transfusion.  The decision was made to hold off on any transfusions, largely based on the possibility of needing to repeat the transplant via the boost.  The preference is to limit or avoid giving Mireya any blood products that could cause an issue with the success of a second transplant.

Based on how Mireya's counts have been trending, the boost is our next viable option.  I've been praying to avoid this for both Jalen and Mireya, but we are not seeing the expected increase in her counts as hoped.  It's possible we need to give her body time, but in the grand scheme, we don't have a large window of time to work with.  We cannot allow her to languish here in a cycle of low counts, transfusions and uncertainty.  It's still very baffling to find ourselves back at one after so many months of exceptional success, but we're so thankful to have Jalen, despite how terrified he is of being his sister's donor again.

We received a call this afternoon from our Medical Team to return to the hospital after lab results showed Mireya has tested positive for an infection in her blood.  The infection has been identified as a Staph infection.  Additional test have been conducted to determine if it is MRSA.  Staph and MRSA are both very heavy hitting infections that can be life-threatening.  MRSA specifically is contracted from contact with someone that already has the infection or has cared for someone with the infection.  It is important to identify which infection it is, so a specific antibiotic can be prescribed.  Reya is currently taking a heavy hitting medication that covers a multitude of infections, but MRSA specifically is resistant to multiple antibiotics.  Her counts are also down another notch, but we'll still hold off on transfusions at least for tonight.  Mireya is doing well.  She does not have a fever, which is good.  Her hemoglobin is low, so she doesn't have the same energy she had a few weeks ago, but overall she is doing well.  A weakened immune system trying to fight off major illness is very taxing to the body, so please pray for strength and the ability to quickly recover.

The weeks have not gotten any easier and the highs and lows are absolutely draining. Everyday I pray for strength and wisdom as we oversee Mireya's care. She is our Warrior Princess and we stand alongside her suited up and ready for whatever comes our way.   We serve the ultimate Overseer who we know is able to turn this around in an instant.  The realization of how close we are to repeating this transplant has consumed me, but I've been reminded that victory 'will' come either way...turned around or going through. Keep us lifted as we wait out the testing here at the hospital and as decisions are made in the coming week about the transplant.  Nothing is impossible with or for God and ALL things work together for the good to those that love the Lord.  Loving and continuing to trust him through it all. 

Father's Day Scuba Fun

It's been a minute since Quentin and I have had the pleasure of both getting out to do something together.  I read a post about a Discover Scuba session and decided it would be a really fun activity to do on Father's Day.  Our interest in scuba diving was initially piqued after a deep sea snorkeling adventure on our honeymoon.  We also have a good friend that is a diver and talking to him about some of his diving excursions over the years has fueled our interest even more.  During our trip to Jamaica, we had an awesome time deep sea snorkeling.  The boat took us out about 30 miles offshore.  Once the boat was  anchored, we threw on the fins and mask and went for it.  It was so beautiful.  We swam side by side  exploring the majesty of the underworld.  At one point the water temperature and scenery changed.  The water was dark and it looked like we'd happened upon wreckage from the Titantic.  We quickly surfaced and realized we'd wandered pretty far from the boat and the other snorkelers.  As we approached the other snorkelers, someone mentioned seeing a Nurse Shark just below near the reef.  We caught a quick glimpse of the shark, and made our way onto the boat for departure.  In 2003, the movie Open Water was released.  It is a pretty frightening movie, loosely based on a true story.  Thinking back to our deep sea snorkeling experience, I  understand how you 'could' get separated from a group and possibly left behind, especially during an activity amongst total strangers.  Every since our snorkeling experience over 12 years ago, scuba diving has been something we've talked about doing together.

Discover Scuba was a far cry from our time in Jamaica, but it was awesome to learn about the equipment, gauges, underwater communication and some of the basic safety maneuvers.  A few things were tricky, I struggled with the task of allowing water into your face mask and clearing it out while submerged. It took me three times to successfully figure it out.  The most hilarious exercise was learning to recover your mouthpiece should it get knocked out while underwater.  Our instructor demonstrated the motion to retrieve your mouthpiece.  He talked about how a mouthpiece could accidentally get kicked out of your mouth by another diver.  He also shared an instance where a fellow diver had an issue with their tank and yanked his mouthpiece out of his mouth to get the air they needed.  Thankfully dive packs have a second mouthpiece, so a diver has the ability to share the air in their tank should something like that occur.  He wanted to simulate a real life situation by having each of us remove and recover our mouthpiece.  In the event we couldn't locate our mouthpiece, he would give us his.  In my mind I thought this is definitely the one task I would get right the first time, because there was no way I was putting 'his' mouthpiece in my mouth.  Now if it were a real life situation I'd probably be one of those quasi-panicked divers that just rips it from his mouth to get air, but in this exercise, no dice...mind over matter.  I got it on the first try, as did Quentin. On the way home, we laughed and joked about that drill hysterically. Quentin was thinking the same thing I was...gotta retrieve this mouthpiece on the first try, because there will be no mouthpiece sharing today. 

Quentin really enjoyed his gift and we loved having a few hours to get out and do something fun together.  At some point we'll have the opportunity to take the class, complete the open dives and get certified.  We're definitely looking forward to checking this off the bucket list.

The Heart of The Children

So much has transpired in the last few months.  The love and support of many is still so amazing.  Over this 11 month period, Mireya has been an exemplary patient and a true fighter.  She presses through with a resilience and a flow that is beyond words.  We try not to place a lot of emphasis or focus on her illness.  We do what needs to be done, have our checks and balances and keep it moving.  God is working it out and we're pressing toward the mark of victory over this diagnosis.

Mireya was 3 years old when this all began, about 4 weeks before her 4th birthday, and a brand new 4 when she was diagnosed.  She has been a trooper.  There is a lot about this journey she does not have 'words' for which has presented itself at times as what I'll describe as melt downs.  Something very different from a tantrum.  It's apparent in those moments, she is overwhelmed with her emotions.  For all she has gone through, I think she is entitled to a few breakdowns.   I've certainly had my share throughout this ordeal.  Please pray for Mireya's emotional well being and the ability to continue to do all that is asked of her as we work our way to better.

As Mireya gets older she is more 'aware' of things and has been more vocal about things upsetting to her. We had not realized how sensitive she's gotten about her hair until a recent melt down involving her sister. I took Makinley's hair down as I prepared to wash it.  Mireya's hair is growing back beautifully, but when you have a three-year old sister with hair down her back sashaying around you just might have a moment.  Anyone remember those 'You Just Might Be' books, a lot of those points were hilarious.  This not so much. It struck Mireya like a freight train.  She started crying and sobbing that she wanted her hair back.  She wanted long hair.  It broke my heart.  She asked me why I had her hair cut.  I sucked back the tears and explained to her that one of the medications she took last year made her hair start to come out and we made a decision to cut it so we didn't have to watch it fall out. That was a hard day, but I'm glad we did it that way.

We've never made a big deal of Mireya's hair.  She's gotten into wearing hats, which I could never get her to do before.  We've tried a few neat things with her hair as it grows, which she's liked.  We have cool hair accessories, but deep down in her heart, she misses and wants her hair.  That is a very real emotion.  It's just not one she has voiced until now.  I tried the whole your hair is still longer than Mommy's (enter the Family Feud strike gong) that does not work anymore, because Mommy just keeps cutting hers every month or so.  It hurt to hear and see. We are believing Reya will attend school this Fall.  It's definitely different going from a program with other kids in treatment that look like you to the big wide world of public school.  Keep this in your prayers. We hope highlighting individuality and her uniqueness will reinforce how she feels about herself as opposed to focusing on hair.

Summer has always been a time for us to to enjoy water activities.  It's something we've obviously had to curtail due to Mireya's Hickman Catheter.  Mireya asked me last night if she could have a pool party when she got her line removed.  Again my heart sank at the innocence of the question and the huge milestone she realizes it is.  I told her she would 'absolutely' have a pool party when her line is taken out. The first of many parties and celebrations.  So we definitely have that to look forward to.

My Super Hero boy/brother Jalen has also been walking around with a heavy heart.  When his sister went into the hospital, he was worried if she didn't get better that he was going to have to 'do something' again.  Jalen and I talked at a base level about his having to 'do something' and he began to get physically uneasy just speaking about the possibility of being his sister's donor again. Since then, we've broached the subject with Jalen very gingerly. There is no need to discuss something that is merely a 'maybe', but also Jalen is the kind of child who would be consumed by reliving in his words what was 'a good thing for his sister and her life, but he didn't have a choice about doing it".  Jalen did great during the transplant process, but how a child processes events varies and obviously can be a frightening place.  A transplant via the boost would require more this time and it is likely we will only share with Jalen what we deem necessary when we have to.  I don't want him internalizing what appears to be a concern for him through his own deducution of information.  Bless his heart.  

The one thing Jalen has wanted or asked for over the last year is an Ipod Touch or an Ipad.  I was surprised to see that several of his classmates had an Ipod Touch.  He has asked a billion times about the possibility of him getting an Ipod Touch or an Ipad.  I told him maybe he could get one for Christmas, but that it was a really big gift for little boy, but just maybe.  I still happily live in the world of the Blackberry, but after investigating the Ipod Touch as opposed to the Ipad, I'm inclined to go a few hundred more for the Ipad.  It just seems to make more sense because it would be a gift that they all could use.  I am making a confession....IF Jalen has to go through being a donor a second time, I'm going to do all I can to have an Ipad in his possession as he recuperates.  The gift he is giving his sister is priceless and I will do what I can to make that happen.  I'm proud of him.  Even in his fear, he knows what he is doing is helping his sisiter's life and even if he feels he doesn't have a choice he knows it's a very good thing.  So if your in the know or have a connect, that is definitely my hearts desire for him should we have to repeat this process.

I've spent a few nights mulling over these conversations and instances with both Jalen and Reya, all of it filling my eyes with tears and my heart with sadness, but I will delight in the day that Reya's hair has grown out and she can take a bath with more than a few inches of water or she can jump in a pool.  Well I'll be delighted, but with a different appreciation for doing two little curly heads.  I will relish the moments where she is free of all issues and Jalen can relax without rotating a thought in the back of his mind about being a donor for his sister.  If he happens to be downloading an app on his new Ipad, more power to you big brother, you more than deserve it!

Holding Pattern

Mireya's visit this week showed a small improvement in one area and a steep decline in another.  It's hard to gauge progress while fighting this infection.  We're in a holding pattern for another week to see how Reya's body recovers.  Our spirits are lifted as we focus on the expected end of our sweet, courageous fighter 100% healthy.  God is well able to do it. The weeks seem to take forever, but we know everything can turn around in an instant and that is what we're trusting God to do.

We love and thank you for your continued thoughts and prayers.