Thursday, June 30, 2011

Sometimes You Have to Cry Out

"Be strong and of good courage, do not fear nor be afraid of them; for the LORD your God, He is the One who goes with you. He will not leave you nor forsake you." (Dueteronomy 31:6)

Thank you Lord for your love and for your presence. Help me to be all I need to be right now, continue to give me the capacity to endure and to fight the good fight of faith even in my time of feeling weak and helpless. 'You' are a present help. You are my peace and my strength. Everything we stand in need of you will provide.

Thank you for Mireya's sweet and gentle spirit. We thank you that EVERYTHING is working together for our good. We thank you that she will remain unscathed as a result of her chemo and all of the other medications she will be receiving. We pray that her spirits will remain high and as those cells are destroyed she will have super natural strength in her body. 'Nothing' is to difficult for you Lord. We lay all our wavering emotions aside and say 'thank you', because we are standing on your word and your word is true, and cannot return to you nullified.

We have enjoyed these last 11 days at home. I don't want to go back to the hospital, I really don't. We know we have been placed in some of the best hands in the nation and you have equipped each of these individuals to perform their specific task to perfection. We lift our daughter up to you Lord and pray that life continue to flow through her body and that her health will be restored 100% without issue. Even in my emotion and through my tears, all is well with my soul, because I know who I serve, who remains in control and despite it all, everything is going to be better than alright.

Monday, June 27, 2011

The Time is Drawing Near

It's been a challenging few days. We got a call from the Transplant Unit a few hours before our appointment to notify us that we are scheduled to be admitted to the hospital on Friday to begin the preliminary workup for the BMT. It felt really odd to 'hear' the scheduled time and dates. I will admit I've been dwelling in a 'space' for the last two days and have felt very displaced with my emotions. It's like you know you've been talking about it for several weeks, but now you are scheduled in less than 48 hours to begin the process.

During our appointment, we found out Mireya's bone marrow isn't functioning at the same capacity it was initially because her levels are not being sustained for even the minimum length of time and expectancy. We received a transfusion less than 5 days ago and her platelets had already bottomed out, so we had to get another one. We're also edging closer to the threshold of transfusions our team is comfortable with prior to going into a transplant, so we had to go back to the clinic today to recheck levels and everything came back good.

Mireya will receive chemotherapy for 6 days. The bone marrow harvest from Jalen and transplant will take place next Wednesday. We've been struggling with what to do about her hair. We've received varying degrees of what to expect from 'it will fall out, trickle out, thin in areas or come out in patches'. Hmm I don't like any of those anticipated results. We do understand the hair loss is a physical response to a chemical process and it affects everyone differently. Our hopes were to diminish the level of trauma surrounding 'all things hair' if we could. We talked about just buzzing it off, and donating it to Locks of Love. Most of the people I spoke to ended up cutting their hair at some point during the process anyway, so why not start there? Surprisingly, Mireya was on board with the idea, the mission and the plan. I told her it would be as short as her brothers to which she smiled. I also told her I would do it with her which she also thought was great! She was most excited about being able to give it to a child who needed it, because she knows it will grow back. Some plans are meant to be broken, the closer we got to the actual appointment time, the less certainty I had about doing it. After some divinely appointed conversations and phone calls we decided to wait and see how her body responds to the chemo. If we feel the need to cut it at least we know Mireya understands (as best she can) what could happen and is seemingly ok with the plan.

Emotions are emotions and faith is faith. The way we feel does not alter what we believe. God is still in control. Please keep us in your prayers. Specifically that Mireya will have minimal to no effects from the chemo or other medications she'll be taking. We have a great support/admin team of family and friends working with us. If you've indicated you wanted to help you should be a part of the group we've created and you will receive communications from them as they work on coordinating tasks to help us out during this time. We were originally told this initial process could take 8-12 weeks. Realistically that could be as little as 5 -8 weeks. So we're also praying for a swift recovery. Thank you so much for your continued love, support and prayers.

Sunday, June 26, 2011

Happy Days Are Here Again

It's hard to describe how wonderful it has been to be at home with everyone playing and laughing, even fussing and crying. I've caught myself many times over the last week relishing moments where I'm walking around my house doing nothing more than existing peacefully. The children have so easily fallen into a groove of comfort and stability. Mommy and Daddy are both here and so is Mireya. Mireya's spirits have soared through the roof this week. This weekend we saw that fun loving, easy breezy girl who finally let the guard and edginess go. It was a beautiful thing to see. We're fever free, pain free and just free to be.

Those other two, not so fortunate. Jalen has been battling some sort of cough which is likely allergy based, but so often it can turn on a dime into something else. It's lingered long enough and even though he's not been dragged down by whatever it is, we'll need to have it checked out. Makinley woke up from her nap with a fever and complaining about her stomach. So we'll have a 'two for 1' appointment today. It could be allergies, could be viral, but either way it's not good when you've got a struggling immune system in the house.

We also have Hemoc appointments today for both Jalen and Mireya to get bloodwork and counts done. Final determinations on the transplant should be made today also. Of course, Jalen has to be well and we'll have to have a concrete answer on this virus that showed up in his testing. The results would be available in two days, which would push us to the end of the week for any plans.

I spent time last week trying to figure out what types of things we could do to make this past week really special for Mireya at home while still keeping her protected from exposure to any viral or bacterial infection. I took a step back from feeling like we had to 'do' anything and the beauty of this week has been simplicity and the joy of being surrounded by the ones you love. Watching the children so happy to be together and do all the things they did before Aplastic Anemia came into our lives is golden. My son was sitting on the deck in the glider and he looked up and very sincerely told me how 'it felt good to be outside together and watching his sisters play and have fun'. He hit the nail on the head and I knew exactly what he meant. He is so observant and able to use his words to express his own joy. Mireya's joy showed up with a sparkle in her eye and a comfort that just allowed her to be present in the moment without worry or concern. Makinley's joy showed up in the best random hugs, kisses and affirmations of how she 'loved me so much'. Her sense of stability has returned.

I do not want this sense of normalcy to end. These moments are priceless and much more special than they ever were before. We know everything is subject to change again soon, but we'll just take each day and thank God for granting us more time. Time to enjoy days like this, time for Mireya's body to flip the script, time for us to be rejuvenated, re-energized and we thank him for revealing to us that in the end it doesn't matter how much stuff you 'stuff' into your life for pleasure because when you strip that all away, the best thing you have is love and one another.

Friday, June 24, 2011

In the Queue

Mireya's transplant was originally scheduled for yesterday, but has been postponed until next week. She was in the clinic yesterday and had to get both blood and platelet transfusions. It was a very long day. She'll have another checkup on Monday to make the final determination on plans for the transplant. Jalen will have additional blood work done on Monday because one of the test came back unequivocal for a particular virus. Before we can proceed, the doctors need to use another testing method to determine specifically if he has this virus or not.

I've been out of town with Paris for her college orientation. I was pretty torn about going with so much happening at home, but I'm glad I was able to be there to support her. I love LC. It's a beautiful, quaint school and the people from the top to the bottom and in between are so warm, friendly and inviting. The Administration shared that the LC Class of 2015 is the largest incoming class in 108 years. It's also the most academically and athletically adept class, with the greatest geographical reach and the most ethnic diversity. In addition the school will receive it's highest rate of International Students ever this year. Amazing! I'm so proud and very excited for Paris.

Jalen and Makinley have been on a pause as far as the spectrum of their activities, by virtue of what things Mireya can do. I told them both they could play in sprinkler this afternoon. Mireya has limitations as far as water and her Hickman line, but she refused to be excluded from the mix. How do you tell a little girl that has been cooped up for days she 'can't' join her brother and sister in doing regular enjoyable activities. Mama worked it out. I placed a cloth over her line, wrapped her in saran wrap and threw on the one piece. We also had a chance to get out in the world for a bit this week. Mireya tried to give me the business about wearing a mask, but once we threw a few Princess stickers on it, she was fine. So one of the 'helpful' task will be converting those kiddie masks into ones fit for a Princess.

It's seems like forever since we've been to the grocery store like for real, for real. I was beginning to feel like Old Mother Hubbard with bare cupboards. I feel much better with a full fridge and pantry, especially with the prospect of being out of pocket for several weeks. Another 'helpful' task we'll have to be on top of. We're still pressing and praising God. Thank you for the tremendous response to assist us in whatever way necessary. I feel like every good thing I've ever done in my entire life is being returned to me. It's so hard to describe how it feels to see love in motion. There are no words for the feeling. We're so grateful and have been overwhelmed with Goodness, Grace, Mercy and Favor. I just can't say 'thank you' enough...Thank you!!

Tuesday, June 21, 2011

Throw Me A Lifeline

SOS...I think I'm drowning and I don't know it. Most women are key at multi-tasking, managing and maneuvering it all. I did it in the corporate world and I'm the head chick in charge in my home, but this diagnosis has changed and shifted my power. There is no kryptonite to suddenly increase my capacity for more. My strength and ability to keep pressing comes from my faith in God and his word and knowing that he is with me through it all. I don't know how I would be able to cope or deal otherwise.

The proposed date for the transplant has been pushed back to early next week probably the 27th. Protocol calls for at least 7-10 days post op before she can have a transplant. Somehow I thought I was gaining a week, but quickly realized the 27th is next Monday. There is so much to do and even more to coordinate. There are conditions to follow and schedules to adhere to. I did have a moment of overwhelm and panic, but I know everything is going to be alright. Having said that I'm going to create a quick Facebook group or an email listing and those of you that have said what do you need?, I'll be sending out a list of things 'en la manana'. I'm working on a first come, first reserve basis. If you're free and open to the task at hand, you've got it. I don't really know how else to do it and quite honestly I can't truly gauge it all, but I have to start somewhere. #1 on the Master List is figuring out a way to replace the carpet. It's a health concern for Mireya and will need to be replaced. Where's my fairy Godmother with my 3 wishes? Tell her I've got some wand swinging for her to do.

I spent several hours at the hospital today with Jalen having his Pediatric medical clearance done, meeting with BMT Coordinator and finally completing paperwork and consents. Jalen and I scored big at the lunch carts surrounding the hospital. We walked around eagerly from cart to cart. There's just about every cuisine you could hope for, remember we've spent 24 of the last 35 days in the hospital virtually surviving on Subway, cafeteria food or Chik Fil A. There was Thai, Chinese, Indian, Noodles, Burritos, Caribbean and tons more. We were so excited. Jalen went for lo mein and veggies and I did a veggie wrap. Jalen hopped in the car and said 'this is so good and better than McDonalds or Chik Fil A. Hmmm that boy loves some lo mein.

Mireya is dragging a bit today. We're certain it's because her red count was borderline when we left and perhaps is down a little more today. We'll be back in clinic on Thursday. She'll likely need a boost by then. It's day two of us caring for her line at home and it hasn't been as bad as I thought it would be. The dressing needs to be changed on Friday. I 'really' don't want to do that part, so I may see if I can talk the Hemoc nurses into doing it when we're there on Thursday. It would be helpful to see it done a few more times, so I'll see how many times I can actually just 'see' it done before I actually have to do it.

It's Day 2 of the Fast and we're continuing to pray and believe God. I'm reminded of Matthew 15:28 of the woman whose daughter was suffering terribly and she cried out to God for help. She was persistent in her pursuit of his help, even reminding him of how the most unworthy or the unintended benefit from being positioned in the right place (a crumb snatcher). She refused to be turned away. "Dear woman," Jesus said to her, "your faith is great. Your request is granted." And her daughter was instantly healed. We are continuing to cry out to God. We're persistent, we won't lose hope and we believe Mireya's health will be restored 100%.

Monday, June 20, 2011

There's No Place Like Home

Dorothy had to endure quite a journey before clicking those heels and returning home. It's been a long 18 days and word on the street is we get to go home today. No need to click the heels, just sign the slip and get me out of here. Mireya is ready and super excited. Her platelet count is hanging tough, her white count has increased, but is still very low, the red count is borderline, but she should be fine.

This is Day 1 of a 4 day Daniel Fast (Whole grains, fruits, vegetables, water and 100% fruit juices, no meats, no sweets) where our church, family and friends will be turning down the full plate to pray and unite as one in prayer for Mireya. We will stand strong together trusting God to move in this situation and praying that his will be done. It's possible we'll return to the yellow brick road later this week, but not because God can't do it or has denied our requests, but because there is more physical work to be attended to. The Lord gave us a way out in Jalen, and should we find ourselves back here for the transplant, our 'specific' prayers may change, but we have a confidence in Christ that everything we've been praying and believing for in the end will come to pass. Mireya will be made whole and her health will be completely restored.

I'm looking forward to being at home with my entire family and sleeping in my bed with my husband. We'll continue our mission of keeping Reya well and guarded against illness or infection as best we can. In these last few months, I've learned to take very little for granted. I've gained a greater appreciation for EVERYTHING, being especially mindful not to overlook even the smallest of things. Thank you so much for your continued love, support, prayers and acts of kindness. It has been such a blessing to us.

Saturday, June 18, 2011

Power in Prayer

It has been difficult to get to church over these last several weeks. We've tried to get to bible study as our schedule has allowed, but since Mireya has been hospitalized that has also become a challenge. I was so excited to get to Corporate Prayer this morning. Our Saturday morning commitment ended last week, so I could go without issue. I love my church and church family and have missed being in fellowship with everyone. Today's hour of prayer was a dedicated time to pray specifically for Mireya and our family.

I was so full when I arrived it was hard for me to say much. I slid in my normal place and just prepared my heart to praise God and leave all my cares and concerns there. Before long, I moved closer to the front to a more accessible seat. I was so moved and touched by everyone that got up to pray for us. It was incredible. A group of people coming together on one accord with like minds and hearts petitioning the Lord to move and show up in our lives and in Mireya's body. It was powerful. The fullness I felt was translated over and again in hugs causing me to just burst from the inside out. To be surrounded by the love, care and warmth of so many was truly a blessing to me.

Many of those in attendance have been following the blog, but I knew some were not aware of what exactly was going on so I did take a few minutes to share and thank everyone for being a blessing to us during this time. Mireya has been in a lot of pain over the last few days. They have used a morphine drip to manage her pain. The Drs. haven't expressed great concern about her lack of appetite, but they are clear that she needed to be up and moving around. The goal has been to work on getting her up and walking. Mireya has declined this request multiple times over the last day, BUT GOD....I received a message during the time we were in prayer that 'Reya was very upbeat and moving around'. God moves in the midst of our prayers and our praise. Quentin and I are faithful enough to believe that God can turn this around in 5 days. Nothing is impossible for God! I've said it before, just as Mireya's body started to fail one day, it can just start to work and function as it was created and designed.

Today blessed me. Thank you to everyone that was able to make it out and for those that showed up in spirit. Thank you for your words of healing, love and encouragement. Thank you for the seeds that were sown. Thank you to my dear friends Pastor Mike and Raquel (Rocky) Maye who during Corporate Prayer at their church this morning also lifted up Mireya and the Bolton family. Thank you to my BeautiControl family for being there to pray and support me. I was overwhelmed with joy. So often we get caught up in the race of life that we fail to pray or thank God for all he has done. If you do nothing more, be sure to thank him for the common blessing you receive daily which is breath in your lungs, mobility in your limbs and that you are in your right mind. And don't forget to also ask him to watch over and protect you and your family and friends.

When the children and I arrived at the hospital, Mireya was so delighted. The nurse said he had not seen her smile like that all day. She grinned from ear to ear, hugging and kissing her brother and sister several times during the visit. Mireya has been without fever for a few days and can possibly come home tomorrow. Hallelujah! Last month she came home from the hospital on Mother's Day which was a awesome gift for me. It would be so wonderful if she could be home on Father's Day too. I know Daddy would love that. We're still standing on the promises of God. This could all turn around in an instant.

Our church family (Faith and Family Church aka FFC) will be continuing to pray, but we will also begin a Daniel Fast on Monday for 4 days. One day for each year of Mireya's life. The bible tells us in Mark 9:29 that 'this kind can only come out my prayer AND fasting'. We are 'all in' and continuing to trust the Lord because either way, in the end we win. If you feel led, please join us in the fast. I'm praying that during this time God will bless each of us with what we need.

Friday, June 17, 2011

Devising a Plan - Help Wanted

I've been making a mental note of every time someone has said 'what do you need' or ' give me a call' and 'let us know if you need something'. My reality is that very soon we will be needing to coordinate many things. I don't realistically know how we're going to manage it all, but it will work out. I'm pulling together a list of areas where we'll likely need help, complete with a disclaimer that it all could change @ a moments notice.

The Lord continues to work on us in the area of asking for help and we're doing 'better' with receiving it. It's going to require the village to maneuver through all of this with our sanity, strength and a sense of balance for the rest of the crew. Please exercise the 'opt out' clause if you need to. We know there's always a lot going on and life is happening for everyone, so trust we count it super special that you would extend yourself to do anything. Feel free to message me if you'd like to receive what will become an ever evolving Master List of helpful things and deeds, let me know the types of things your open to helping with, or perhaps you have ideas of things I've not even thought of or considered. We love you and feel extremely blessed to be surrounded by such awesome family and friends. Most importantly, continue to keep us in your prayers.

If you are free in the morning, stop by FFC (Faith and Family Church) @ 7900 Walmsley Blvd for a special time of prayer between 9am-10am for Mireya and our family. We are standing on the promises of God, because we know that Prayer Changes Things and Nothing is Impossible with God!

Thursday, June 16, 2011

Quick Update

Mireya's appendectomy was a success. Her surgery time got bumped a few times due to a few emergencies, but she did great. They were able to successfully remove her appendix with no issues. Jalen had his work up today and as expected it was a struggle. We managed our way through after a lot of blood (vials and vials), sweat (everyone in the room broke a sweat) and tears (mostly Jalen's, but a few came to my eyes). We are still tracking to do the transplant next week. Jalen will have to be examined by the Unit's Pediatrician and the Hemoc team needs to submit our final consent. Mireya's progress will determine if we can go home for a few days before the transplant.

Thank you to special friends and family for visits, kids sitting, special deliveries, food drops @ the hospital, pickups and playdates, washed and folded laundry, home cooked meals and most importantly love and prayers. Our church has a time of prayer on every 1st, 2nd and 3rd Saturday of the month at 9am. This Saturday's hour of prayer will be a dedicated time of prayer for Mireya and our family. The bible tells us in Matthew 18:20 'where three or more are gathered together in my name, there I am in their midst'. Please come and support this time to pray and believe with us for everything we stand in need of during this process. If your not in the area, consider setting aside this time to pray and lift us up. There is power in prayer and God honors our faithfulness and sacrifice. Faith and Family Church is located at 7900 Walmsley Blvd. For more info visit

Wednesday, June 15, 2011

New Developments

Mireya's fever has persisted for the last few days with little indication as to what the cause could be. The Drs. ordered a CT scan of her chest and lungs to rule out any underlying infections that may have gone undetected. The scan shows she has appendicitis. We're stuck between a rock and a hard place because the surgeons are very concerned about performing the surgery to remove her appendix because of her low white cell count which is needed for healing and recovery and the issue of low platelets and excessive bleeding. This level of infection is also a major issue in proceeding with the transplant as expected. The surgeons, pediatric physicians and Hemoc team got together tonight and determined her appendix needs to be removed. With our consent, it will be taken out in the morning. It will take 1-2 days for recovery and the transplant will likely occur early next week.

Jalen is scheduled to complete his medical work-up tomorrow. This will require about 30 vials for bloodwork, a consult with the Hemoc team and they've also thrown in a tour of the O.R. if he's up for it. Jalen's had a few unpleasant medical experiences and has exhibited excessive anxiety in several medical situations. A recent visit to the Dentist resulted in the need for nitric oxide (laughing gas) due to a significant increase in his heart rate from simply saying 'ahh' and having his teeth counted. Pobresito! So we'll probably have our work cut out for us tomorrow. That or we'll have to cut a sweet deal for cooperation.

No one was prepared for this bump in the road, but it's been a process of one day at a time and this is what today has presented us. We're praying the surgery is a success, with no issues. Mireya's spirits have been down and we're believing physically she will feel better and possibly be able to get home for a few days before having the transplant and being hospital bound for several weeks.

Tuesday, June 14, 2011

Sighs & Smiles

We have been very excited at the prospect of going home. Mireya has been without fever since late Sunday evening. The team took her off the meds and wanted to observe her for at least 24 hours before releasing her. It's been eleven days and we want her to have a chance to go home before coming back in the next several days and being here for several weeks on the transplant unit. We were tracking to go home in the morning, but the fever has returned. There has been no sign of infection or bacteria in her cultures and right now the fever is the only indicator that something is amiss. Its not clear whether this is largely attributed to low neutrophils or some sort of viral infection.

It's been a long 11 days. We've noticed Reya's behavior is a bit different this go round. She's perfectly content watching movies, reading books or just spurts of bedside play. We've tried for several days to get her up and outside, to play in the play room, or join some of the activities but she's been very resistant to any of those suggestions. Overall it's probably not a bad thing, because it lessens her exposure to germs and illness, but Momma needs to feel the sunlight on her face...please. Her line hasn't been in her chest long and is still quite stiff, but she is getting more comfortable with it. Physically she has been wiped out, but the transfusions have perked her up quite a bit. Being with Mommy or Daddy is a comfort and seeing her brother and sisters always seems to lift her spirits. Earlier today we received a cheery arrangement of balloons and a cute little bear from a friend I have not seen since we lived overseas as teens/preteens. It was a wonderful surprise for her and I that really made her smile. She has held on to that bouquet of balloons all evening long and still has it firmly planted in her hands in the wee hours of the morning.

The nurse just came in with vials for days. Thank the Lord for that Hickman line. It has made all the difference this time around for counts, cultures and administering medications/fluids. She's going back on the antibiotics and for now we just wait this out. Keep us in your prayers sounds a bit redundant, but please keep us in your prayers. Where would we be without the power of prayer. We welcome them and we definitely need them.

Saturday, June 11, 2011

Choices and Decisions

Mireya's health has declined and due to the severe nature of her condition, it is imperative that we make a decision on the next steps for her care. We've been talking about the options of the Autoimmune Suppressive Therapy and the Bone Marrow Transplant at a high level for a few weeks, but finally had to sit down with our physician to really dig into the nuts and bolts of this procedure. There is so much involved and I tell you if we didn't have our faith, we'd probably be standing somewhere wasting time with our heads in the sand wishing it would all go away. Unfortunately we don't have time to waste. There are a lot of factors and variables to consider with both options. When they start talking about failure, death, extreme medications and side effects it becomes more than a simple choice. You begin to think about all the points in between.

Both options suppress the immune system, one will replace what is not working and the other 'could' help the body bounce back on it's own. The percentage of success is higher with the BMT, but the suppressive therapy is a lower risk option. AST takes months to determine if it is working. During the course of AST there is the potential for additional transfusions, which can complicate having a transplant following AST. I keep telling myself breath, pray and know that everything is going to be ok, even with all the risks associated with all of this.

The BMT has a high success rate, but is also high risk. There is a possibility of the body rejecting the transplant even in a sibling match. Insurance requires an extensive workup of tests and evaluations on both Jalen and Mireya before the BMT will be scheduled. The approval is usually quick, so it could be as early as a week from today that we begin the whole process. The initial recovery period is anywhere from 5-8 weeks in the hospital following the transplant. During that time we would visit the clinic several times a week to monitor and track progress. Mireya will also have to take medications over the course of a year to support her system. These medications will slowly be tapered off in intervals as her health improves. We learned throughout the course of her recovery and monitoring, Mireya would be unable to go to school. We were looking forward to her going to the Pre-K program this year at St. Lukes, but we'll have to figure something else out.

Quentin and I have been very prayerful over this decision. Half the battle is finding a donor match. What a miracle and blessing to have our son be the match. That is huge. Mireya is so young and overall we want the best option for a total cure, long term survival and one without a life long dependency on medication. We know that God is in control and is concerned about everything that burdens us. We continue to trust him, despite our worries or fears. I refuse to believe the Lord has brought us this far and given us the favor he has for failure.

A friend messaged me this week and told me to 'Take Heed, God has chosen to have you and Quentin sit at his feet and commune with him like never before' that resonated with me because we definitely are learning to trust God in a greater way. He is our peace, he gives us comfort, and we believe he has already provided everything we stand in need of. Please continue to pray with and for us. This is not easy, but we trust that it is right.

Blessings and Support

We have had the opportunity to enjoy several programs and initiatives of Connor's Heroes and ASK. Connor's Heroes is on a mission to build a community of heroes to ease the burden of cancer today and help to find a cure for tomorrow. They provide assistance to pediatric patients and their families, promote public awareness and also fund pediatric focused cancer and bone marrow research. Mireya does not have cancer, but Aplastic Anemia behaves very much like a cancer in many respects. One of Connor's Heroes initiatives are their Hero Backpacks and Tote Bags. We received both during our recent hospitalization and it was such a blessing. There were baby dolls, barbie dolls, card games, Leapster games along with a new Leapster. The backpack was also filled with stuffed animals, puzzles, books and other fun activities. The family tote bag was very well thought as well. Gas cards, grocery cards, free food delivery to the hospital, vouchers for house cleaning, kid's activities and food vouchers for those favorite spots we've worn out in the hospital. There were also practical items lotion, chapstick, hand sanitizer, journals, cards and puzzle books. I've been amazed by the thoughtfulness and generosity.

The ASK Foundation is an organization that stands for Assistance. Support. Kindness. ASK provides spiritual, emotional, financial and educational support for families dealing with life threatening illness such as cancer and serious blood disorders. Most of the activities I've shared over the last few months are a part of ASK. The Child Life Program, those fun and awesome volunteers, music and art therapy, family connections in addition to host of programs to enrich and support children in treatment and their families. One of Mireya's favorite things in the Fishbowl is to watch movies while receiving her transfusions or getting her counts done. ASK has donated personal dvd players, an extensive collection of movies/games, laptop computers and gaming systems for the kids and parents to enjoy while in the Hemoc Clinic. I definitely plan to volunteer my time and talents to the needs of these organizations and their missions when I can. Feel free to visit both Connor's Hero's on their Facebook Page or via the web at and ASK on their Facebook page or at

In addition to these awesome organizations, our church family (Faith & Family Church) has stood with us since day one. Members have prayed for us and committed to continuing to do so. They've brought special meals to the hospital and our home. They have reached out and been a major blessing to us. Thank you to my Mommy friends for the nightly meals, and sweet treats, princess packs and restuarant gift cards. Thank you to friends for arranging to have our house cleaned. The way we've been rotating has made it difficult for us to stay on top of everything. Thank you to those who came to our home and tidied up while we were away. Those who watched our kids, picked them up from school or provided playtime for them.

This level of support has been incredible. Many of you have extended our names to the prayer lists and teams at your churches. There is power in our prayers. God honors the heart of his people and we know that through the agreement and coming together God has been moving on our behalf. It's been tremendous. Text messages, emails, posts and simply following the story as it unfolds on the blog have been so uplifting on some really difficult days. Thank you! We can't say it enough. Your thoughtfulness and generosity cannot be measured. We pray you will be blessed as you have blessed us.

Friday, June 10, 2011

Back and Forth

Cameo sang it best (back, back and forth and forth), Arnold simply stated 'I'll Be Back', the folks in the clinic smiled and said 'Welcome Back' and just like that 'we're back' at the hospital with a neutropenic fever. Perhaps my prayer should have been more than allow us to be home for Paris' Graduation, because we literally left here late Wednesday, enjoyed being able to share in such a wonderful long awaited day and now we are here again.

Mireya's counts were good when we left, but her neutrophils were still considerably low. We'd been on a mission with extra hand washing, sanitizing, mask wearing and lysol spraying, yet we still find ourselves here with some sort of apparent viral or bacterial madness. With the percentage of neutrophils present, it's hard for her immune system to fight off anything. So we'll see where her counts are today, send off a blood culture and wait. We had a great day celebrating Paris' high school graduation and we are so proud of Paris. One chapter ends, as another begins. We're thankful we have such a supportive family and to be surrounded by awesome people we are blessed to call our friends.

We arrived home in the afternoon, met with the Home Health Nurse and learned what it takes to care for and manage this Hickman line. It is no joke. I also had a 'Pay It Forward' moment. As that session was coming to an end my husband took a phone call and relayed the message that someone was on the way to deliver a fruit basket for us. For the life of me I couldn't decipher the name and something, something, something? He's usually much better at relaying information (like we would totally win a game of Taboo with minimal words), but he was so preoccupied with finishing up our session that was all he could offer up. About 10 minutes later a lovely handmade organic fruit arrangement and chocolates was sitting on our porch. The 'Bearer of Goodness' almost got away, but we solved the mystery. My dear and beautiful friend's Mom came by with a token of Celebration and love for us. I am so fond of her and it was such a sweet surprise that really added to my day! One of those moment's where God's love for you is expressed through the heart and thoughtfulness of others. So the 'Pay It Forward' for me is I'm pretty good for that Baked Ziti Meal at a moments notice, but I was so inspired by this basket and how simple, yet creative it was, that I want to give something just like it to brighten someone else's day. I wish I had taken a picture of it, but the children were so excited, we ripped it open, dove in and they totally wrecked shop.

As many of you now know Jalen is a confirmed donor match for his sister. One of the first thoughts that came to my mind when we received this news was Jalen's health. It's crucial that he's well to initiate this process. We spent some time at the pediatrician's office because Jalen woke up complaining of a sore throat, and right now the Boltons are not having it, we can't afford to. Jalen had his adenoids and tonsils removed last summer, but he is still known to be the household distributor of strep throat and any other germs he picks up while away at school. It turns out he has a viral infection and we'll just have to wait out.

Reya is resting now. Her counts have come back low and we are being admitted, in addition she'll be getting a blood transfusion. We'll see the Medical team during their rounds, but we also have a scheduled time later today to go over our new plan of action. Please keep us lifted in prayers for health, strength, clarity and wisdom in decisions. The God we serve is greater than any opposition that comes against us. We continue to praise his name and give him glory because we know everything is working together for the expected end which is restored health and victory over this illness.

Wednesday, June 8, 2011

Houston - We Have A Match

We received a call tonight from our Hemoc Dr. informing us that Jalen is a 100% donor match for Mireya. Words cannot express our joy! God is so good and so faithful! It is hard to translate my excitement and elation across this page, but imagine my heart so full it could burst in happiness from here to the moon and back. Imagine me standing on a rooftop shouting "Hallelujah" until I can shout no more. Imagine tears in my eyes, attempting to roll down my face, but they are caught inaudibly in my chest as I'm overcome with emotion.

No need to pinch me, because it is not a dream. It is an answer to our prayers and the prayers of so many. We've placed our trust and faith in the Lord from Day 1 to move on our behalf and work it out. When we spoke with the team yesterday we discussed the odds in the matching process. They shared stories of a child with 8 siblings and not one was a match, as well as a child with only 1 sibling that was. We were told statistically there is a 1 in 4 chance for a match. So our chances actually decreased from a 25% chance (1 in 4) to a 12.5% chance (1 in 2). I remember my husband saying aloud 'God has a lot to make up with that equation' and 24 hours later we know that he did just that and more.

Most of you know the story about my bewilderment in Quentin's ability to get me to agree to have 'one more' baby. The old 'one more' trick. I'd joked with a friend earlier this week with great seriousness that maybe this was the reason for the 'one more'. Hmmm? In the wee hours of the morning I very clearly said out of my mouth what I heard in my spirit, 'Jalen is going to be the one', 'He is going to be the match', 'What an awesome gift for a brother to give to his sister'. The Drs. told us they would like for it to be Jalen because he is older, heavier and would be the better candidate. As it turns out Makinley's donor typing showed the exact opposite makeup to both Jalen and Mireya.

God is in control and nothing takes him by surprise. It's not a coincidence that Jalen, our first born child, the one who we fought the hardest and endured the most heartache to conceive and bring into this world is the one who will give life to his sister. It is not a coincidence that only 3 out of about 2 million people get this condition. It is not a coincidence that Mireya is only the 3rd instance of Aplastic Anemia that has been seen here. It is not a coincidence that of the 8 markers, Jalen matched all 8, and it is certainly not a coincidence this occurred to Mireya as opposed to Makinley who wasn't a match to either sibling. These are numbers and odds that God works in and through.

I had two prayer requests for today. One was that the procedure of inserting the Hickman line would be a success and it was. We'll be working with a home health nurse tomorrow to learn how to care for and maintain the line while it's in. My second request was that Mireya would be home in time for Paris' Graduation. She was released from the hospital late this afternoon. We have an appointment on Friday to meet with the Hemoc team as a follow-up and to discuss preparation for the Bone Marrow Transplant.

The message in this is Deuteronomy 31:8 (NIV) The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.

Please don't give up, don't give up hope, don't count yourself out, don't give up on God, because he surely will not give up on you. Align your thoughts and actions with the word of God. It doesn't matter what it looks like, it doesn't matter what it feels like. You have to see things through your eyes of faith. We don't always understand the why, we are not always prepared when the unexpected happens but God moves in impossible situations. Thank you for your prayers, the prayers of your churches, and please continue to keep us in prayer we now embark upon the next phase of this journey. God is not done. We are claiming VICTORY all the way until Mireya's health is fully restored!

Kings Dominion or Busch Gardens?

It's been years since I've been to Busch Gardens. I have friends that love BG and go there every year. We usually purchase Kings Dominion Season Passes. I really don't ride roller coasters or many other rides for that matter. I have this 'motion' thing. Riding in the back of a moving vehicle can make me sick at times. Lots of fresh air and horizon gazing helps. My trips to amusement parks consist largely of enjoying the pricey food and being amused by what I see, and people give you lots to look, laugh or shake your head at. Sad, but true.

I am a huge fan of Water parks and usually have no issue enjoying any of those tubing rides or the super slides. We used to go to Water Country fairly often so I like that KD has the roller coaster thrill and water fun. There are also Character Breakfasts, Kiddie Shows and awesome concerts to enjoy each season. I definitely want to catch Kings Fest this year with Matt Pitt and The Basement Experience. The kids have loved going to KD. It's awesome when you have a season pass because you don't feel pressed to stay all day to get your money's worth. We've gone at varying times of the day and stayed for a several hours or just a few. Obviously it has been considerably more crowded in recent weeks, but still a lot of fun.

We will have to revisit BG again sometime to really check it out and see how it's changed and compares to KD. For now I'd love to hear your thoughts on Kings Dominion, Busch Gardens or both, so feel free to leave comments on your preference. I've also added a quick poll at the top of the blog, please take a moment to cast your vote.

Tuesday, June 7, 2011

So Close, but No Enchilada

Mireya remained fever free overnight. Her white and hemoglobin counts also increased. The platelet count remains high following the transfusion yesterday which is really good. We had a bit of an issue when the nurse came to draw her culture. She went in for the stick and it just didn't work out. I realize this can happen from time to time, however, I do not expect you to keep pushing a needle in a dead space and causing the area to swell because you are now maneuvering where you shouldn't be. Mireya was in hysterics at this point, so I politely instructed them if there was any question on whether or not they could be successful a second time, they needed to call on someone they know does it routinely and with accuracy. It would be no problem to request someone from the PICU or Pediatric E/R to come up and do it for us. I recognize some of the nursing staff are not regularly doing draws or starting IV's, but this was not the time to try to figure it out. They quickly polled their resources and called upon an All-Star on the floor and got it done.

We had a short discussion with the Medical team yesterday about intravenous catheter options. After the incident this morning, I'm even more on board with how much easier life would be for Mireya with one in place. We talked about tentatively having a pic line inserted today if there was no fever. Somewhere between tentative and 11:55 it was shared with me that it was scheduled for sometime today and that Reya could not eat after 12:00am. Gotta love a 5 minute notice for a child that is fast asleep. I did manage to get her to drink a little something, but that was it.

The team came to discuss the pic line and check out her vein prospects via ultrasound. B-I-N-G-O we have a winner, we'll be back shortly so we can put it in. We were all sharing with Reya how this would help her and eliminate the need for multiple sticks and how she could get her medication through it too. Of course she was clueless, but no more sticks made her smile. We knew she would need to be sedated for the procedure and the way they talked about it made me think it would be a fairly swift process. When we got to the PICU area I learned the procedure would take about 30 minutes, but once it was in they would need x-rays and to complete several additional things before it could be used. Essentially she would need to be over there for several hours. Mireya went under very quickly, less than 20 seconds and she was out and comfortable. The environment has to remain sterile throughout the process, so my non-sterile self was asked to come back in about a half hour.

Upon my return I learned that the line didn't take. After several attempts the wire just wouldn't thread through her vein so they had to abort the mission. No one told us there was any chance of it failing, so I was sort of in limbo emotionally. I looked at Reya still out cold on the table with several small puncture areas on her arm and my heart sank. I wanted this to be over, I wanted it to work, I wanted it to eliminate her being stuck a zillion times for meds and counts. There was a solemness in the room as we waited for her to wake up. I asked them how often this happens? The failure rate is usually 1 out of 5. The technician told me she tried, but just couldn't get it to take and after so many attempts they felt it best to stop. I'll admit it felt like defeat and then that sweet little girl opened her eyes and my only concern was to feed her and speak to the doctors about the next steps. There was mention of putting in a Hickman line, but that would require the Radiology team and they were unsure if it could be coordinated so quickly. We held off on feeding Reya just in case it could.

Mireya wasn't very hungry which was hard to believe after 16 hours, but also a blessing should she have the other line inserted. After an hour or so she nibbled on a few Cheez Its, but completely ignored the food they brought to the room. Another hour or so passed and the Dr. came in to answer any questions and give us discharge instructions. There was no reason to keep her since the fever has subsided and there was no infection in the cultures. We have to continue to be diligent in guarding Mireya against illness and infection, because even though the white cell count has increased the cells that fight infection are still very low. Fever would be our #1 indicator of infection. Reya was given another type of medication to assist her body and maintain her counts, but she would need it for at least 2 more days. The medication is given via injection which is not something I would be comfortable doing at home, nor is Quentin. We talked more about outpatient options for the Hickman line, but once the Dr. realized Reya hadn't really eaten yet she pulled out all the stops to see if she could make it happen. We received word that it could not happen today, but would take place first thing in the morning.

We are believing this procedure will be a complete success from start to finish and that Reya will be able to come home tomorrow. If at first you don't succeed, pray and try again!

Monday, June 6, 2011

A Glimpse of Goodness

Mireya managed to rest well overnight and has been without fever since late last night. A victory in the midst of it all. She has a fair amount of petechiae in her mouth and also some new areas on her neck. Her counts are all extremely low today. Her white count is almost non-existent and her platelets and hemoglobin will likely require transfusions today.

The plan has been that once the fever broke, she could go home with limited activity. Yesterday an additional medication was added to help boost her white cell count. Apparently, this medication has the ability to mask fever, so to eliminate any doubt, it has been removed from the rotation and we'll be monitored for at least another 24 hours to ensure the fever is gone. The task of putting in a pic line was also mentioned. Mireya has endured multiple sticks over the last several days due to the daily blood cultures. Ultimately she will require a port a cath, so we'll need to decide what is best for now.

The Bone Marrow Transplant Unit received Jalen and Makinley's typing samples. Due to the critical position we are in, the team has requested a quick screen to determine if either are a match. There are 8 markers they look at when determining a match. A good match is 6-8, with siblings if either child is a match for at least 4 of the markers then it's likely at least two others will also match. The process normally take 2-3 weeks to complete, with the quick scan it is 1 to 1.5 weeks. The Lord remains our source for everything we stand in need of. We're thankful for the peace of God, and we know his grace and mercy are sufficient to see us through as we wait.

Sunday, June 5, 2011

Cuatro Dias

Day Four at the hospital and this fever just won't let up. Reya cannot be released until she is fever free for at least 24 hours. Her fever continues to fluctuate between 99.0-103.6. The fever is at its lowest following a dose of Tylenol. She did have two cycles of vitals that had the fever at 99.0 without Tylenol, but within a few hours it was back up. Her counts have continued to decrease. The white cell count is critically low. Her platelet and hemoglobin counts are both borderline for transfusions. We are holding off unless either are absolutely necessary, which could be within the next day or so. Reya is getting two different antibiotics via her IV, a steroid as well as a new medication to prayerfully stabilize her white cell count. It takes approximately 2 days to see results with this new medication, so we may be here for at least that long.

Jalen and Makinley have been typed so we should have feedback on whether or not they are a donor match within 10 days. Overall Mireya is doing well. She continues to roll with the program with very little fuss. She saw her brother and sister today and it really lifted her spirits. Today was also Paris' Baccalaureate. We were fortunate to leave the hospital for a while while Grandma sat with Mireya so we could share in this special occasion with Paris. Four more days until Graduation. I don't know what this week holds but I'm praying Mireya will be out of here by then.

This is a very tiring process of sit and wait, hope and pray, but we know she is in the best place she can be. I finally decided to go home last night at the urging of my husband to rest and just refocus my mind. I was so tired I thought I'd surely go home and fall into a deep sleep. Physically I was depleted, but emotionally I was maxed out. I found it very difficult to rest thinking about Reya in the hospital, but eventually I was able to drift off to sleep for a little while. Very little prepares you for something like this. We are doing the best we can to stay strong, but also address the sorrow associated with having your precious little girl battling through something like this. Our faith keeps us sane, and allows us to remain positive against all odds. We believe it's going to be 'better than alright' in the end. Espero que tenemos salir el hospital de prisa...por favor. Dios puede hacerlo!

Friday, June 3, 2011

Diagnosis & Prognosis

The 'osis' is Aplastic Anemia. We were holding out that it could be something else, but all of the testing has eliminated assumptions of whether or not it's non-classic ITP or another type of blood disorder. We remain prayerful that her body has the potential to turn this around by itself in the same way that it has seemingly shut down full production.

We have two treatment options, a Bone Marrow Transplant (BMT) or Autoimmune Suppression Therapy (AST). If one of her siblings are a match, the Drs. feel strongest about the Bone Marrow Transplant because it gives us the greatest chance of addressing the issue in it's entirety. It takes about 4-6 months to measure the effectiveness of Autoimmune Suppression Therapy. One of the downsides to committing to AST is the possibility of additional transfusions throughout the process which decreases our chances of a sibling donor match.

The bone marrow typing process takes about two weeks. There are several markers used for matching. A good match is considered one that meets at least 6 of those criteria. Once a match is determined, Reya would be scheduled for the transplant within 1-10 days. The high level overview of the procedure is she would require several days of chemotherapy and a 4-6 week hospital stay for monitoring and recovery. We are praying that either Jalen or Makinley will be a donor match for Mireya. If either is not a match, the Bone Marrow Registry would be used to find a suitable match. In the meantime, Mireya would begin Autoimmune Suppression Therapy before a Bone Marrow Transplant would be performed with a non-sibling match, due to some of the problems that could occur. Issues could arise with a sibling match, but the likelihood of those issues is lessened when the marrow genetically comes from the same place. So please pray with us that Jalen or Makinley will be a match for her.

We have not been able to get this fever under control. It has spiked anywhere from 102-103.6. She is taking a very high dose antibiotic via IV, but has spent most of the day listless and sleeping. She did perk up when Daddy brought her brothers and sisters to see her. In order to be released she has to be fever free for 24 hours. I'm praying by this time tomorrow we will be able to go home.

Be Careful What You Ask For

I was having a bit of banter with my sister yesterday and telling her that I needed a Road Trip. Well I imagined quite a different journey, but I hopped on the highway this morning, hit a few tolls and pulled up to the Pediatric E/R. Mireya had a high fever and was complaining of a headache. Fever was one of the conditions we received a few weeks ago as a 'Go Straight To the Hospital' card. We've been here for several hours now. The fever has subsided some, but the headache is more persistent. As a result we had to do a quick CT-scan to ensure everything is ok. The menacing trio (platelets, hemoglobin and white cells) are stirring up some alarm, as they are all down across the board. It's only been 3 days since her transfusion and the platelets alone have dropped by 60k. We will be admitted shortly so that her counts and blood cultures can be monitored closely. She is also receiving antibiotics intravenously. We hope to have some answers soon. In the meantime, it was a short drive down and my girl is exactly where she needs to be to get better. Thank you for continuing to pray for us and Mireya's health. We firmly believe that despite the circumstances, ultimately she will be well. More to share as it unfolds.