Saturday, July 30, 2011

Just One of Those Days

Momma said there would be days like's just one of those days that I'm feeling a certain kind of way. I went out for a bit to take care of some business that appears more complicated than useful to setup. On my way home, I ran by Barnes and Noble and sat there reading my Nook for about an hour. It felt great to get out in the world and just be. On the way home I sat at the light and tears ran down my face. It probably didn't help that I'd just read half of the Jaycee Dugard book. Just one of those things where in the blink of an eye or through the course of a day your life can change. I sat there thinking about life a year ago, those lovely carefree summer days and I fast forwarded to now, isolated and carefully planned out days and I had my "Yes how quickly things can change" moment. But my faith remains in the fact that the Lord is shouldering all that concerns me and he's working out every aspect of Reya's recovery. I gauge where we'll be one year from today and I'm saying 'Thank You' Lord for the expected end. 'Thank You' that our steps are ordered and in all we must endure you are in the midst and working it out.

Our appt at Hemoc yesterday only took 4.5 hours. The Drs. are slightly concerned by the rollercoaster ride Mireya's white count is taking. They've ordered a test that will give us an idea of the cellular make up and hopefully give them an idea of what's going on. In the meantime she got a dose of 'LMNOP' (GCSF) to try to boost her white cell count.

I'm working on getting out of this funk. As I look around me and see these little smiling faces, I can't dwell in this place long. Celebrating life, celebrating wellness and celebrating God's grace and love.

Thursday, July 28, 2011

A New Kind of Freedom

We're happy to be home. It's amazing how Reya's spirits have been lifted. This is a new kind of freedom with many limitations, but we'll take it. We have a lot of 'guidelines' to adhere to and to help us to get through these next 100 days as best we can. The most obvious is she will continue to be a 'masked' girl for much of her time out and about or when having visitors outside of 'the pack'. 'OCD' is our new level of handwashing and sanitizing. It's just best that way without the anxiety of course. You can never wash or sanitize enough. Reya is now able to eat fruits that can be peeled. The one thing she wanted the most while on the Unit was grapes. Peeled grapes are you kidding me? I tried hard to dissuade that request with other yummy fruit offerings, but there is nothing like a Grandmother's love. Nene stood patiently at the sink and peeled several grapes for her girl to enjoy. Ok, so the visual is obviously half the enjoyment. She ate a few, but couldn't get past they fact that they 'looked' different and turned brown quickly. The same thing happened when the children had plums the other day and I had to peel hers. She took a few bites and aborted the mission. She can still have veggies, very well washed and cooked, cooked and double cooked...yum well done veggies. Leftovers beyond one day will not make the cut. No aged cheeses, deli sliced cheeses or meats. Visitors are limited and we need to avoid the woods and crowded places. Oh and staying out of heat and sun are also 'Top Ten'. We 'can' go out to a store, but must make this trip when there are 'less people' there. It's also advised her time outside be somewhere near 7pm-8pm. Imagine the challenge in that with three other kids, activities and just life. I wanted to run out yesterday just to grab a few things, but timing got the best of me. We were all set to go and then I realized it was nearing the lunch hour where countless people would be out. So I said we'll wait a few hours, but then a nap foiled the plan. Fortunately I have such awesome family and friends who are willing to run errands and pick up things that we need.

We also had plans to have our carpet upstairs replaced before Mireya returned home. Household carpets are known breeding grounds for everything we need to eliminate in our lives germs, bacteria, fungus and mold. Our plans were sidelined with Reya's health bouncing back at such a incredible rate (that of which we are thankful for). So pulling up the carpet and having her in that environment right now would be more harmful than the necessary end result. So 'ideally' we'll keep her in the area of the house with hardwood as much as possible and as Dr. Godder says 'surrounded by plastic' that can be wiped down and then of course she sleep and rest in her room. We've had the carpets cleaned which does not eliminate mold, but it will put a small dent in rate of growth of any existing mold. A mold test was conducted on our house which gave us some insight on potential issues and levels inside the house in comparison to the levels outside. The levels came back good, but there were recommendations for a couple of things that are considerations aligned with initiatives we already had dealing with air flow and purification. Plants are another area of contention. I don't have a green thumb so that doesn't have the same level of impact as some of the other items.

We've been in good rotation with our medications both orally and via the line. It takes a lot of focus to remain on task with giving several medications with different doses, three time a day. Not to mention cleaning all those little vials. Her IV medication takes about 3 hours to administer. We're free but pretty much need to remain isolated as best we can from potential health threats and issues. Our home remains our sanctuary and we'll creatively figure out how to allow the other kids to be the kids they long to be within the scope of their sister's limitations. Playdates are great, but it's hard because Mireya 'feels' excluded, so I'm having to come up with some cool and special things 'we' can do while all that other kid fun is going on. It would be nice to find a time and place that she and I can go to. Trust me I'm a resourceful chick so I'll figure out something. But if you have an idea or suggestion, let me know. It's taken a lot more to do all the things we need to, simply because we are all now back in the house and there's so much going on and to coordinate. We'll be pulling out those lists of people who said I can do this or I'm willing to do that and pulling numbers, "Now Being Blessed By #21". God is faithful and Reya's health is continuing to improve. Continue to keep her and our family lifted in prayer as we get acclamatedd and comfortable with where we now are in the process, Day + 25.

Tuesday, July 26, 2011

Back on the Block

We're back on the Hemoc Block and man it didn't take long to be right back in the flow of things. Reya was in a very upbeat and super jovial mood. Getting through vitals and the draws was a breeze today. We got to see Allison and her Mom. They were in clinic but had plans to come up to Bone Marrow Unit to visit with us and Emily. They were excited to see Mireya discharged from the floor. Allison is doing really well. She just returned from a week long camp sponsored by Special Love and it sounded like a totally awesome time. They gave Mireya the most adorable and fluffly stuffed puppy. It's so soft. We'll have to figure out a name for him. We had a chance to catch up with one another. Mireya enjoyed time 'playing' with Allison. It was so sweet of her to hang out with Reya for a little while. 'Fast Hands' are good for basketball, but not when your rotating through pictures on your camera. I had taken a great picture of Mireya and Allison together and 'accidentally' deleted it. Will have to try again another time.

It was a long day. We were in the clinic for over eight hours. Reya needed a blood transfusion. She has built up some antibodies so the search was on for a comparable blood product. Once they located what was needed, took a little over three hours for the transfusion to complete. Always arrive at the clinic with your bag of tricks full of snacks, a blanket, activities, and anything else to pass the time away. I learned that after our very first appointment. Reya's counts are a little lower than they were upon our release and she will require a new med to be administer via her line at home. There are a few other things to look out for with this infection to ensure it's not GVHD (Graft vs Host Disease). Everything we are seeing is within the scope of expectation, rather things that 'could' occur throughout recovery.

Connor's Heroes was here today and you all know how much I LOVE, LOVE, LOVE them. They are celebrating 'Christmas in July' and are handing out bags of really cool stuff for every child (patient, sibling(s) and friends) in the clinic today. I had a chance to talk with Lisa Spickler Goodwin (the Founder and Managing Director) about the positive impact and how much of a blessing Connor's Heroes is to so many. It really does help to have someone or a group of someone's that know and understand what it is like to endure the reality of 'the diagnosis' and all it takes to rally through treatment and recovery.

We're back in rotation and will be in clinic every other day for check and balances, counts and whatever else is needed. We're praying and thanking the Lord for increase in Mireya's counts and continued increase in her health. Being at home has been a huge lift for her spirits. She is happy and even more vibrant. God is good and continues to show himself through the love and kindness of so many. We love and appreciate it all. Thank you!!!

Monday, July 25, 2011

Free @ Last

Reya is home and we are super excited. As expected it didn't take long for her to eat. I'd been trying since Day 3 to have her drink a those specially picked out Caprisun she loves. She was out of the hospital less than 3 minutes and sucked down a Caprisun and ate a snack. We had 'Breakfast for Dinner' and she managed to eat some of that too. The excitement from the children was the buzz that took us well into the night. Over and over I heard 'I'm so glad to be home' or 'Reya I'm so glad your home'. The twinkle in her eyes and the smile on her face said it all. The children asked to have a sleepover. We had to nix the idea because in the initial days it's important we try to keep them out of one anothers face. That idea turned into a 'free for all' in Mommy and Daddy's room at about 3am. I need a king size bed for such events.

Makinley has not been feeling her best. I had to take her to the Dr. to ensure she doesn't have the infection that Reya developed while in the hospital. It is not uncommon in kids having gone through chemotherapy, but it is very contagious and harmful to the rest of us. We'll have Makinley's lab results by tomorrow. In the mean time we'll do our best to monitor the interaction as best we can.

Leaving the hospital took some doing. Reya has multiple meds to take while at home. This resulted in a few trips to Westbury Pharmacy and phone calls close to closing time at 11pm. All is well, but if you think coordinating Mireya taking 'a few' of the meds by mouth in the hospital was a trick...hmmmm having her take all of them at home by mouth is like coordinating a small circus act.

Masks are a must everywhere. So we did some sticker and mask detail last night. We have a lot of stipulations and criteria to adhere to through this next phase of recovery. As I shared about Allison's procedure we now have to get to and through the '100 day mark'. Some of the eating restrictions have been lifted, but things are still quite restricted at least until we can get through a few more increases in our counts.

Our Little Mi-rey-a of Sunshine (as dubbed by Nurse Tim) is home and we are ecstatic. Getting ourselves in the mix with managing meds, meals and symptoms will take some trial and hopefully little error, but she has responded beautifully up until this point. God is faithful and we're so thankful for her progress. Stay tuned.

Friday, July 22, 2011

Temporarily Delayed

Plans to be discharged tomorrow have been delayed because Reya has an infection. We're adding another antibiotic to the arsenal to work on getting rid of it. She has been extremely tired and wiped out as a result. We should still be able to go home this weekend, barring any other issues. I have striped this room down to bare necessities so when they say go, we have nothing to slow down the process. We are managing to leave here with much more than we came with, so we've separated out some duplicate items received and ones we already have at home to be a blessing to someone else.

Mireya remains in good spirits, but is definitely ready to go home. Her TPN has been decreased considerably to give her the opportunity to eat more. She has been on a mashed potatoes and green beans kick. I can't say that she didn't like those things before, but we ordered this same meal for breakfast, lunch and dinner. Mommy doctored it up a bit and she managed to eat a little. We're happy her eating is showing greater promise today. She keeps telling me she 'wants the food from home'. We'll still have food restrictions once we get home, but I believe she will definitely eat better once she get there. Home is where the heart is and apparently for Reya where the stomach receives it's incentive to be fulfilled.

Thank you so much for all the love, support and prayers. This phase of our journey is coming to a close in swift victory. The infection is simply a blip on the script, that can easily be rectified. Some of the symptoms associated with this infection are similar to those experienced in Graft vs Host Disease, so we're so happy (not that she has an infection), that it is not indicative of GVHD. We continue to believe she will not have any issues at all with GVHD, so we can focus our attention and efforts on the next phase of recovery from home. Continue to keep us in your prayers.

Wednesday, July 20, 2011

Bolton Family Engraftment Dance

A few of the Nurses have boogied down with us today and one also attempted to sing. Her disclaimer was she could do neither, but kudos to her for going out on a limb to give us such great entertainment. I've given out a few check marks to the awesome Nurses on the Unit dropping it like 'it's hot' and throwing their hands up in the air like it's 'all glory'.

'Funkytown' is one of Mireya's favorite songs, so we threw on the Ipod and went for our own 'Engraftment Dance' Bolton style. Someone had to be the DJ and hold the camera, so Mommy missed being 'caught on tape' but trust me I've been dancing, singing and celebrating all day long!

Engraftment Dance Take 1 and Engraftment Dance Take 2


Tuesday, July 19, 2011

Great is Thy Faithfulness

Mireya's had a great week. Her white cell count continues to increase. It is a huge possibility that we can go home very soon, possibly within days (yes days). Of course I'm taking that with a grain of salt until the final word arrives, not to mention there is sooooo much to be done. This is a few weeks earlier than expected, but what a great exception to the plan. God is good!

Reya has continued to experience these 'growing pains', much to her medical teams delight. It's funny to watch her say 'my back hurts' as they look like they want to slap a high five and do the 'Engraftment Dance' which I have yet to see by the way. What hair is left on her little buzzed head is continuing to fall out. Her head is so pretty and smooth. Some nights she ask me to sleep with her and we just cuddle and rub each other's head. Some nights I want to rub that head and make a wish that she will go to sleep. She has been keeping strange evening hours, even without a nap in the day. So we are the crew that sleeps well into the morning.

Another pretty little smooth headed girl was admitted on the floor yesterday. Her name is Emily and she is also 4 years old. She will be having a autologous bone marrow transplant. An autologous BMT is where the patients own bone marrow is used. We went to visit her this evening to see if she wanted to do an activity with us. This in itself if a victory. Mireya has been up and very active in her 'own space', but going out on the floor has been a totally different animal. It usually results in major meltdown, so for her to 'want' to go down the hall and visit Emily was awesome. Emily was in the middle of dinner. My girl is still doing TPN, so the concept of actually eating has been a passing phase. The girls have planned to get together some time tomorrow and play in the Family Room.

I can count on one hand how many times we've strolled the halls. Venturing out usually includes some sort of bribery (I mean reward). Reya's new fascination is Disney World. I'm sure after all of this a trip to the Happiest/Most Magical Place on earth will be warranted. I don't know that it trumps the Ultimate Beach Vacay, but it's definitely up there. Ok...I digress again, so usually if we 'walk' to the Family Room we can look at Disney World Princess You Tube videos on the computer in there. Of course we could do this in the room on my laptop, but she hasn't figured that out yet.

In preparation for transitioning her care at home we need for her to starting eating. This week she has managed a couple bites of yogurt, a french fry and two packaged apple slices. That bone marrow requires more than that to thrive. So they are cycling her TPN off for a few hours a day to give her the chance to try incorporating some things on her own. We've had some great successes this week and know that Reya's progress will continue to be blazing trails because that's the kind of God we serve.

Sing the Praises to the King....All Hail King Jesus (He Reigns Forever)!!!!!

Saturday, July 16, 2011

Best News Ever

Mireya's body is engrafting. The two to four weeks after the transplant are the most critical. The high-dose chemotherapy and the ATG destroyed Reya's bone marrow and sidelined her immune system. We've been waiting for Jalen's bone marrow to 'set up shop' in Reya's body, start to grow and produce normal blood cells. That has started and we are so excited!!! The elevation in the white cell count is very small, but it increased again today. The hemoglobin and platelet counts should soon follow. In the meantime Reya will continue to receive platelet and blood transfusions to thrive (and survive) until that time. On average, Reya has received about one blood transfusion a week, and anywhere from two to four platelet transfusions within that same week.

Mireya is also getting growth factors (drugs that help the body make more blood cells). Growth factors can help the donated cells engraft more quickly. Reya suddenly started complaining of back pain yesterday. The nurses were all excited because this is a sign that everything is working together as expected. Word on the street is the Nurses have an 'Engraftment Dance'. I haven't seen it yet, so I don't know if it's a line dance, Soul Train style or a free for all, but as happy as I am I might have to yell 'Remix' and throw in a breakdance routine or a 'cha cha now ya'll'.

Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

This has been our prayer all along. God is so faithful. We have to stand on his word and believe it without wavering. It's hard sometimes, especially when your faced with the unfamiliar. It may 'seem' easier to trust God and remain faithful when we are 'aware' or 'feel' within ourselves that we know what's on the other side. BUT when you don't have a clue and you can't even frame up in your mind what or how it should play out you have to stand on the word of God and trust that he's working it out. I've wanted nothing more than to scoop up my child and make everything right for her. I don't have the ability to do that, but God does. So I lift her up to the Lord and ask him to allow life to flow through her body. I pray continually that her health will increase and be restored 100% without issue. Our prayers are being answered. Everybody dance now (jump to the rhythm, jump jump to the rhythm jump).

Thursday, July 14, 2011

I'm Not My Hair

Late last night Mireya's hair and scalp started really irritating her. She would scratch or pull at it and hand it to me as it came out. She woke up this morning with a considerable amount of hair on her bed and pillowcase and it was still bothering her. It appeared to be dry, prickly and itchy. She couldn't keep her hands out of it and acted as if she just wanted to pull it all out. I decided to try and moisturize her hair to minimize the irritation. I combed out her first braid and it literally was like 'combing it out' by the handful. There was just a small patch left. It was quite a disturbing sight. The Cancer Center offers a service called Massey's Magic Touch that specializes in the 'Deluxe Cut'. I'd made a pact with Reya prior to entering the hospital that I would cut my hair if she had to cut hers. And just like that Mireya and I are now sporting a couple of new, no fuss hairdos. She is beautiful!

Hair today gone tomorrow or is it hair yesterday and it doesn't matter so much today. Thankfully it's just hair and it will grow back! All in the name of love and wellness.

The Power of Love

Huey Lewis and the News (1985), talk about how the 'Power of Love' makes the world go round. Israel Houghton's, 'The Power of One' (2009) was designed to spark a fire inside of people (one by one) so that they can understand that the God inside of them will empower them to change the world.

Our world has been changed as we witness 'The Power of Love' shining through the hearts of so many. It is a beautiful thing. We have marveled at the outpouring of love received by so many. It's difficult to wrap our arms around and it often feels very overwhelming, because we realize no one 'has' to do anything. To see and experience kindness, love and deeds at this level is beyond words and honestly, we've struggled with receiving and feeling deserving of it all. My Aunt shared with my husband during one of his moments, since we were having such a hard time receiving, perhaps they should pray that no one does another thing. (gulp) Well that puts a different spin on it. We're learning to hush our mouths and graciously say 'thank you'. Thanks AJ for that boldness and perspective.

I recently connected with a Mommy friend I've not seen in a few years since she and her family moved to North Carolina. After her own personal bout with cancer and chemo, she opened a Specialty Boutique that sells wigs, fun head wraps and an assortment of hats. We were in touch last week and she expressed that she wanted to send some things to Mireya from her shop. Ironically I received the items she sent yesterday. Prior to our admission, I had picked up a few scarves and hats just in case we would need them. She sent us some really fun head wraps and an adorable hat to keep Reya's head warm. Reya loved them.

A couple of weeks ago, I met a woman who
has been praying for her son and his wife to be blessed with a baby. We had the opportunity to talk in length about pregnancy and multiple losses. I told her I would be praying for them and was looking forward to hearing a good report the next time I saw her. She stopped by the Unit and brought Mireya a board game to enjoy. I'm happy to share that her son and his wife will be having a baby in about 8 months. Praise God!

One of the Child Life volunteers came by yesterday to see if Mireya wanted her to sit with her and play while Mommy got a break. Believe it or not, Reya said 'yes' and I grabbed my purse and ran out of the door before she changed her mind. They had a great time together. She has offered to come back two days next week to see if she can sit with Mireya again. We'll see what next week brings, because we all know by then Reya 'could' flip the script and act as if she never met her and none of that fun ever happened. She gave Reya a new game they could enjoy playing together.

Connor's Heroes dropped by with a goodie bag of things for Mireya. I had the chance to meet the young lady that volunteered her time to decorate Mireya's room. She dropped off a special gift (a new DS game) for Jalen and a beautifully framed certificate for being a "Super Hero" and donor for his sister. They are so awesome. Reya has received so many great things from family and friends to help keep her warm, occupied, looking cute, and to past the time away. She also received a handpicked "Preschool Pack" from a special little friend in South Carolina (Hi Tessa). Our dear friends, also from SC, sent a Princess pack for Reya this week that she has spent hours playing with. A couple of FFC Warrior friends dropped by to bring both Jalen and Reya gift bags stocked with many of their favorite things. In addition, the Arts and Music program dropped off some activities, crafts and a few tiles for their Mosaic of Hope wall.

My husband's friend and co-worker has brought over games, activities and fun things from his family for Mireya to do while she's in the hospital. She also received a beautiful shawl from his church Bethia United Methodist Church. They have a special ministry that makes beautiful shawls. As they are crocheting them, they pray over the shawl and for the intended recipient (this takes being wrapped in love and prayers to another level) and I love it! A member of my husband's Management team and his family put together a awesome tote that was full of all things Princess. Really unique and awesome princess playsets, stickers and princess activities, but the most precious thing was beautiful handmade cards for Mireya from his children, who have never met her. It was a so special for them to add that personal touch.

Playdates for Jalen and sitting for Kinley have been so helpful during this time. Paris will be going away to college in a few weeks. Grandma took her out to purchase all the items she would need to complete her 'dorm room look'. A family very dear to us had arranged before any of this happened to take Paris out shopping for school. Armed with her list and personal experience from putting their own kids through college they purchased just about everything left on her list. Speechless and totally overwhelmed I just wept and said 'thank you'. She and her Godmother also have plans to get together to put a dent in some of the remaining items needed. What a blessing to have 85% of her needs taken care of. Thank you Jesus and thank you friends and family.

Thank you for your sacrifice of time and seeing to it that we are fed both at the hospital and at home. This has been a tremendous blessing!!! While visitation is pretty much a wrap right now, thank you to the few family members that have come to sit so we could go eat or have a break. Another major blessing, has been the coordination of house cleaning services, not only because we're juggling so much, but it is key in preparing for Reya to come home. I have also been so touched by several little ladies I had the joy of knowing and working with when they were Paris' age and younger. I have watched them all grow into beautiful young women and how special is it to have them reach out to us during this time.
All of these things allow us to focus on what is most important right now without the stress or worry of everything else that needs to be taken care of.

Our church family has been a tremendous support to us. I don't state all of these things to make anyone feel less than or left out, because we have a long list of people just waiting to serve and be the blessing. But I want you to feel and understand the magnitude of what its like to be totally surrounded by the love and kindness of so many. We can never repay it all and the majority of it can't be measured in dollars signs. Words cannot express our gratitude. There really are no words. 'Thank you' doesn't seem like enough, but please know that our heart and love for people would compel us to do the very same things. The greatest gift of all is your continued prayers for Mireya. It's a beautiful thing to know people all across the world are praying for us. We have a long road ahead of us and please know and believe, as a result of your hearts, God is going to bless you. God bless you all!!!

Wednesday, July 13, 2011


I'm back in the hospital with Mireya and it's so good to see her laughing, playing and have better days. I love her so much and I want her well. Her innocence is heart warming, her discomfort is painful to watch, and her lack of 'full' understanding is difficult to work through at times. It doesn't matter how much you 'think' you've prepared someone or how prepared you 'believe' you are, when certain things happen it can still take your breath away, stop you in your tracks or shake you to the core. I want Mireya to be a happy 4 year old little girl without Severe Aplastic Anemia. I want her to be able to go outside and play, be around people without fear of infection or illness, I want her to be able to go to preschool, take a bath, or swim in the pool. She was really beginning to enjoy swimming again before all of this happened. Right now that is not my reality. I understand the 'why' behind most of this. She knows and understands the ultimate goal is to have her better. She's grown accustomed to the Hickman line and not getting it wet. She hates getting the dressing changed, but that line has made life a lot better (no more sticks)..happy, happy, joy, joy!! She gives us less of a struggle when it's time to put on a mask (donned with Princess stickers of course) because she understands even more about bacteria and how it is spread and that it can make you ill. She knows that despite how much she wants strawberries, grapes and apples that she cannot have those things right now.

What she still doesn't comprehend is how long she'll have to be here and why she can't just go home and be with her family. Jalen told me at breakfast on Monday morning that he couldn't wait until Mireya could leave the hospital and we could all be back together at home as a family . It's evident when I watch Makinley run into a room I'm in, just to 'make sure' I'm still there. Or when she repeatedly says 'I want Reya', the detachment is real for all of us. We're doing the best we can to remain connected. The hospital is not the place for your kids to hang out. This is the place that your sick child heals, recovers and gains the strength to go back out into the world. They don't understand why they can't see one another every day and we have several more weeks here to maneuver through. It's hard for Mireya to see a video of her sister monkeying around inside 'that green place you were in (Chili's restuarant)' because she wasn't there. She doesn't want to hear me tell someone how proud I am that Jalen swam across the pool without stopping because she can't swim right now and she wasn't there to see it herself. I dare not show her the pictures of Jalen and Makinley on the Slip n Slide, but it's equally important that they have some semblance of normal life and activities.

The one thing we contemplated before we arrived was cutting Mireya's hair. We were given a few scenarios on chemotherapy and her hair loss and we decided against cutting it ahead of time. Hair loss with chemo is a common. It's a physical reaction to a chemical process. We see it all the time, but when it's happening to your child it's difficult to watch. As I was freshening up her hair, it was hard to see all that was coming out. I thought 'wow' a few more times at this rate and we'll have little to no hair left! Our attending nurse saw the small pile of hair beside me and told me it would be all gone by next week. Apparently week two is rough. Doesn't matter how much forewarning you have, some things you are just not prepared for. I did a pretty good job of holding it together, but eventually I just broke. I've learned over the last week to be even more sensitive to how 'life outside these four walls' affects Mireya. She has moped and whined about wanting to leave here. I believe if we had not been here 24 of the 35 days prior to the transplant she may not be at this place so soon. Last night for the first time she cried and it was not a 'I just want to leave cry'. It was a 'I need to leave this place' because I miss my family, I miss my friends, I miss my life as it was before all of this. Actually she was sobbing uncontrollably and I understood, but all I could do was love her up and try to make her feel better. There are times it feels like more than we can bear, but we find the strength (God gives us the strength) to move through these moments.

“Great is Thy faithfulness, Great is Thy faithfulness, Morning by morning new mercies I see: All I have needed Thy hand hath provided, Great is Thy faithfulness, Lord unto me!” I believe God has something tremendous on the other side of this for us. Please keep us in your prayers!

Tuesday, July 12, 2011


We have the ultimate power in Christ Jesus. Though darkness and challenge try to penetrate the force, it won't work. We have Super Friends. So many wonderful people coming together to be a blessing to us and our family. Does anyone remember how Super Friends used to come on with all the Super Heroes? Some days I feel like Wonder Woman, other days I'm so glad God surrounded me with "Wonderful Women" (and Men) to show how much he loves us. Some times the emotions make be want to bulk up like the Hulk. Remember Super Stretch? We've felt pulled in every direction and our faith is being stretched and tested, yet in the end we are the Dynamic Duo. We pray, look at one another with a fist pump and it's on - wonder twin powers activate. #TeamBolton is unstoppable no matter the obstacle or challenge. Doesn't mean we're without the struggles of just dealing with our emotions and how overwhelming this all feels at times, but we refuse to be moved. We put on the whole armor of Christ. Without it we are powerless. Ephesians 6:11 Put on the whole armor of God, that you may be able to stand against the schemes of the devil.

God has equipped us for this battle. Mireya is a Super Trooper. This little girl has endured much with the best attitude and outlook. She's often complimented on her easy, breezy, beautiful (Cover Girl) flow everywhere she goes. At times you may feel an icy breeze as she flowing with you, but that's her and keeping it in perspective, I don't know many 4-year olds that could endure all that she has and still manage to do it mostly with a smile and good attitude. Jalen is our Super Hero. God created him to do this. It is not by chance and although he knows he is helping his sister to get better as he gets older he'll really know and understand the magnitude of this gift. Jalen and Mireya have always been extremely close. She loves and admires her brother and pretty much goes along with most anything he's asked or wanted. Whether it's a light saber battle (remember she is a Princess) or using her dollhouse as the Headquarters for his Dinosaurs, Storm Troopers and Animal Kingdom. I must admit it was pretty clever of him to tell her she could be "The Princess", Princess Leia which eventually became Princess Reya. But that is Jalen, he has a heart for people and the ability to make you feel special, loved and cared for in all situations.

My friend Carrie brought over the coolest gifts for the kids, Super Hero Capes. She's been referring to Jalen as a 'Super Hero' since we found out he was a 100% donor match for his sister. I thought she had purchased them, but in fact I discovered that she actually made them. I have some very talented people around me. My sister-in-law Cheron made a beautiful 'Princess' blanket for Mireya. The perfect size for her hospital bed with pretty crowns all over it and that fuzzy feel good chenille backing (I secretly want one of these blankets). So I'm going to be hocking these wares on the street because they are too adorable not to share with others.

There are many kinds of strength. But the most important one is the strength we need in the Lord. True strength is not of the body. True strength is of the spirit, measured in faithfulness, trust, and perseverance. We keep pressing. We keep praising. We keep thanking God for the victory. We have a Super Team of Doctors, Nurses, and Organizations working with us, not only do we win, but we win BIG.

Ephesians 6:11-19 "Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God so that you can take your stand against the devil's schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God. 18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints. ~Don't leave home with out~

Kinley Clowning

Kinley Clowning a video by panamama4 on Flickr.

My 2 year old being her silly self.

Sunday, July 10, 2011

Home on the Range

Home is Where the Heart Is, There's No Place like Home...can you guess where I am? My little 'compadres' have regrouped and recovered and it feels good to be home spending time with all three of them. You don't realize how out of synch you get day after day in the hospital. I've been so tired. I feel like I could sleep nonstop for a few days and re-emerge ready to face the world.

We were finally able to remove Jalen's bandages. They had him wrapped up like a little sumo wrestler. The area where they aspirated the bone marrow is tender, but he is doing well. He will need to take iron for about four months to supplement and support his system. Makinley is such a comedian (Kinley Clip). That girl is talking a mile a minute about anything and is into 'everything'. My Parisian girl has been working and preparing herself to go off to school in approximately 5 weeks. Times flies! I've been enjoying just being with her talking, laughing and acting silly. I'm going to miss her terribly when she goes away.

I have managed to find energy from somewhere to play and have fun with the kids. The simple joy of seeing the children running around having a good time has been so refreshing. It's been a struggle to strike a balance while existing within two very different worlds, but we are doing our best. Jalen is so much like I was as a kid. All he wants to do is be outside, play with his friends and read his favorite books. He does enjoy his video games too. Kinley is game for whatever, whenever. Just make sure she has her purse, phone and keys. That girl has got 'work' to do. We've done what we could to fill Mireya's room with a lot of fun things and many of the comforts of home. She reminds us often that she wants to go home, yet on some days she loves her 'cool' new room. These last few days have been physically challenging for Mireya. She's been placed on a morphin pump to help alleviate some of the pain and discomfort she's having. These are the times that I ask the Lord to please help her and to give us the strength to stand when we feel so helpless.

Helpless but not hopeless. All our hope lies in you Lord. You are our present help. Nothing is too difficult for you and we can rest in the assurance that you are in control. Mireya's health is increasing and improving. We will not be moved, nor will our faith be diverted by what we 'see' everyday. Our faith remains in you to bring us out of this situation victorious.

Saturday, July 9, 2011

Post Transplant

Mireya's had a good week. Some days better than others, but everything is progressing as expected. Mireya continues to have issues with nausea and has not been eating. It is not uncommon for patients to lose their appetite, but nutrition following a transplant is essential for recovery. It helps the body to resist infection and repairs tissue damaged by chemotherapy. Reya has seemingly lost interest in eating consistently, and a result, she was placed on TPN (Total Parenteral Nutrition) this week.

Now we wait. We wait for the transplanted marrow to 'set up shop' in Mireya's bones and begin producing normal blood cells. This is called 'engrafting'. The next two to four weeks are very critical. Reya's immune system is suppressed and she is susceptible to infections and bleeding. In addition to the medication to help with her stomach, organs, mouth, throat, and fluid retention, she is also receiving anti-rejection, anti-fungal and steroids to help protect and boost her white cells count. During this time she will receive blood and platelet transfusions to prevent infection and excessive bleeding. There's a condition called Graft versus Host Disease (GVHD) where newly transplanted marrow attacks what it deems to be 'foreign' cells in Mireya's body. In other words "where I am I, get me outta here" and 'it's not going down without a fight'. Our prayers speak specifically to her body receiving and responding favorably to the bone marrow.

It is important that Mireya's exposure to bacterial and viral infections be minimized during this time. She cannot have fresh fruits or vegetables and plants and flowers are also forbidden due to fungal and bacterial growth. Blood cultures are done daily to ensure there are no infections present in her body and to monitor her organ function. At some point in the last few days she was exposed to some sort of infection which was found growing in her cultures. An additional antibiotic was added to her regimen and as of today that infection is gone. Praise God! Daddy is feeling better and has been allowed back on the floor. That has made her extremely happy. Reya's been feeling lousy most of the week. The 'blahs' coupled with nausea and vomiting has made it difficult to get her up and going. Her Drs. want her up and moving to eliminate any type of infections that could occur as a result of being sedentary for long periods of time while bed ridden. I was happy yesterday to see Reya up and out of the bed playing with her dolls and dollhouse.

Overall everything is on track. It remains a day to day journey and faith walk. We're standing on the word of God, and trusting the Lord through it all. We are reminded that God will give us all we need as we continue to serve him. Phillippians 4:19 You can be sure that God will take care of everything you need, his generosity exceeding even yours in the glory that pours from Jesus. (The Message/Remix)

Thursday, July 7, 2011

The Gift of Life

Yesterday was a very emotional day for us. I sat in the room as we waited for them to complete Jalen's procedure and a message came over the loud speaker about a Blood Drive. In that moment I thought I 'should' go. I have never given blood in my life. The one other time I considered it, I was a teenager and it ended poorly. I do not like needles, I dislike seeing or dealing with blood even less, but something in my spirit persuaded me to go. I got on the elevator, went downstairs and gave blood for the first time in my life. I was nervous and I was afraid. I didn't know what to expect and on two occasions almost talked myself out of it (Run Forrest Run). It was a very special moment. My son was recovering from donating his bone marrow for his sister, my daughter had just completed a platelet transfusion and the Drs' were contemplating a blood transfusion because her red cell count was also low. I went through with it because someone else made the very same decision and their blood and platelets have been keeping my daughter alive for the last several months.

What were the odds of a Blood Drive being held, in the hospital, on the very day my daughter is having a bone marrow transplant? I wanted to position myself to 'Pay It Forward' and help someone else in need. I sat in that chair with tears in my eyes, grateful and proud. A single donation can be used for a red cell, plasma or platelet transfusions and that one donation can help save up to three lives. I never understood the impact of donating until now and I would urge everyone to consider being a blood donor. The need is great. We've experienced it personally and I see it in the works every week in the Hemoc Clinic. What an awesome gift to give. Nothing happens by chance. Trust me, I tried to ignore the announcement/invitation to become a donor. Despite my apprehension, I felt compelled to do it. I definitely plan to do it again, possibly even coordinate a blood drive. Hmmm.... a 'Friends of Mireya and Team Bolton' Blood Drive? Together we can make the difference.

Psalms 118:17 I will not die but live, and will proclaim what the LORD has done. Mireya will live and I believe she will continue to be a blessing and definitely be a 'living' testimony of God's love, mercy and power.

Wednesday, July 6, 2011

A Move of God

It's Day 6 or Day 0 as the Transplant Team classifies it. They work on a negative counting system. So we came in on Day -6 and counted down from there. Either way today is all about life and love. Life being infused into Mireya's body through the love of Christ and the love of her brother. God couldn't have planned this any better. The Transplant Unit recognizes this as a New Birthday for Reya.

Leading up to today, I had a difficult time getting to sleep. My nerves were trying to get the best of me, my heart wanted to beat out of my chest, tears filled my eyes but I finally drifted off to a peaceful sleep around 3am. I know it was the prayers of many that took me to that place. I needed it. Stress has attempted to consume me, but hey, I'm the Queen of relaxation (well mostly for others) but I had to go for 'self application' most of yesterday. Going through breathing techniques, relaxing music (yes I travel with that), and some creative visualization. I found myself on the beach with warm sand underfoot, the sun shining on my face with a nice gentle breeze. If you've ever been to one of my sessions you know I can take you there if only for a few moments.

Speaking of the beach, we were scheduled to go on vacation this week to our most favorite beach to enjoy some time together. I'll have to factor in a moment of silence and act like there are waves lapping in from time to time. Trust me, when this is over, we are headed on the ultimate beach vacation. Somewhere tropical, all-inclusive and we're going to celebrate this victory in grand style. Tell my fairy Godmother to work on that one too. While she's working those details, GOD will be handling it all. Ok so I've gotten off track and digressed, just thinking about the the beach has that affect on me. It's our feel good back to our originally scheduled programming.

Mireya had a good night. She's become a bit uncooperative in taking her oral medications, so that has required some true mommy finesse. I'm beginning to run out of creative ways, activities or mind strategies to get her to do it. I guess I'd be tight lipped and hostile too if someone kept trying to shove tiny vials of liquid medication in my mouth every few hours. I've noticed Mireya's hair is beginning to thin a bit near the front, particularly in the areas where there is a lot of friction from laying down. We understand hair loss is a factor we have no control over and it varies from person to person.

Jalen was scheduled to arrive at the hospital very early this morning. He has been preparing himself as best he could to endure the needle for his anesthesia. The Lord cares so much about the things that concern us. Jalen ended up being sedated with medication to relax him. Once he was comfortable they placed the IV in. Thank you Father. The bone marrow harvest took about two hours. Jalen was pretty worn out from the procedure. The bone marrow transplant took about four hours in its entirety. It was very emotional to witness the bone marrow taken out of Jalen's body being transferred into Mireya's. I saw love, courage, life, answered prayers and a future flowing into her body. It was amazing!

Upon completion of the transplant, our nurse Hillary threw together a little 'birthday' surprise for Reya. Imagine your at your favorite restuarant and the waitstaff 'suddenly' comes over to sing 'Happy Birthday' to you. Hilary rounded up the Nurses on the floor and they all filed in singing Happy Birthday bearing a birthday cupcake for Mireya to enjoy. That was really special. We have a long road ahead of us, but we continue to take it one day at a time and thank God for overseeing our care and recovery until Mireya's health is restored 100%.

There is so much to share. I'm excited to talk about something really special I got to do today. I'm feeling depleted and definitely need to rest so I can be an asset to the process in the morning. I'll have to share that tomorrow. Thank you for every phone call, text, email and/or phone message. We appreciate your prayers and support throughout the day.

Tuesday, July 5, 2011

Day 5 ~ Despite it All

Mireya's had several challenges today. Eating has been one of them. She's attempted to eat a little here, and a little there, but it has been difficult to keep anything down. Smells also seem to be really affecting her. Our evening nurse told us about a patient he had recently that told him how chemo can change your taste buds. He spoke of a time he was eating something cherry, but it actually tasted like sausage. Hmmm!?! The majority of what Mireya has been experiencing are expected symptoms from the chemo and the rounds of medication she's been taking. I've been praying that the 'the expected and experienced' be removed from her. God is able!

Mireya had a platelet transfusion two days ago, but needed another one today due to low counts. This is indicative of a steeper decline in the functionality of her her own bone marrow. Over the last week or so it has not been able to sustain her cell counts for any amount of time. She spent the majority of the day resting and pushing through symptoms as best she could. Reya also had a surprise visit from her brother and sister. Jalen and Paris came in the room and she lit up like a 75 watt light bulb. Jalen and Reya greeted one another like two people who loved each other so much and hadn't seen each other for years. It was so beautiful. Suddenly she was all smiles, full of energy, and Ms. Chatterbox. Talk about a 360. It's a powerful visual of what getting up and moving around can do for you despite how you feel. It's a incredible message of how the company of someone else, can lift your spirits, because it allows you to place your mind and cares somewhere other than your situation. Reya had some great visits today. The one thing that sort of popped up out of nowhere was the uninvited guest and party pooper, a 103.6 fever. The only thing to do with that is treat it and hope it stays away.

We recognize the importance of visits and interaction and we know we can't protect her from everything (even though we wish we could), but we are moving into a very critical phase of her recovery and it's likely visitation will have to really be curtailed. It is essential that she not be exposed to any illness, infection, or bacteria. So we cover her in prayer, but we must also use wisdom and practical sense moving forward. It is all love. Our love for Mireya and ultimately wanting to see her forge ahead without any issues. Please keep Jalen in your prayers as he prepares for tomorrow. Daddy has been working with him on the specifics of what to expect in the Operating Room, so we're praying and believing for a promising experience for him. He told me before he left that he was a little scared about it. I told him I understood, but that he would be absolutely fine. God is in control!

Recently I received a book and cd authored by a personal friend whose son overcame cancer. There is no doubt that through their belief, confession and faith that he was healed 100% in his body. It has encouraged me so much! We need to trust, we have to pray and we must believe and exercise faith through our confessions even when the obstacle seems to large or when we feel consumed by circumstances. That is the perfect opportunity for God to show himself. Jeremiah 30:17 show us where the Lord declares that he will restore us to health and heal our wounds. We are holding on and continuing to trust God. Despite the pain, despite the symptoms, despite the reactions, despite the counts, we know Mireya will healed and well. Great is thy faithfulness, Lord unto me.

Monday, July 4, 2011

Progressing thru Day 4

Mireya had another good day overall. There are times she clearly feels rotten, but gauging from Day One she's managing well. Thank you for your prayers! Our last round of chemo is in the morning and then there is a small break leading into the transplant on Wednesday.

We had a small issue this morning because Mommy got the wrong impression. We managed to get through it with minimal collateral damage. When we arrived last week, we had a fabulous nurse named Len who is very caring, dynamic, and thorough. We really enjoyed having her for our first few days. Our evening nurse has been great too and very good with Mireya. Mireya can be a tough one to crack at times. She is sweet as pie, but don't get it twisted, she is the more guarded and resistant one. When you throw separation, chemo and multiple medications on top, it's definitely hit or miss.

Len was off yesterday, but I knew she was coming back this morning and 'assumed' we would have her again. Yesterday we had Tim and he was really good too. Very personable and great with Mireya. 'Nice and good' with Reya are most important, but remember 'thorough' is key to Mommy. Len took it upon herself to determine 'how' informed we wanted to be and she was excellent at keeping us in the loop on stats, vitals and counts. So this sort of set her apart for me, because these are things we've been staying on top of since the beginning of this illness. I mentioned to Mireya that we would be seeing Len this morning. So when Tim strolled in Mireya shut down and was most uncooperative for his first few visits in the room. I felt bad and confessed my unintentional hand in the madness. Being the Facilitator and Peacekeeper I am, I found Len and had her stop by to see Mireya. I was happy she stopped by and so was Mireya.

I'm not sure what the system is for assigning patients each morning, but I think it's called he who yells the loudest? Both Len and Tim expressed during the shift changed that they wanted Mireya back as their patient (remember she is easy, breezy, beautiful...Cover Girl), but Tim won that battle. He is so unassumingly gangsta. Len is going home tonight and work on her game, because she plans to go hard and get Mireya back when she comes in later this week.

So a few things to know about Mireya. I'll call them Reya-isms;
  • don't roll up her like you know her just because you can say her name. If she doesn't know you, then it doesn't matter if you know her mother, her father, sister or brother. She has to know you for herself or at least spend some time with you and come to the conclusion that she 'wants' to be around you.
  • Reya can see you today, be your best friend and still react as if none of that ever happened the next day.
  • You can offer her the world and everything in it and still get your face cracked. She is rarely moved by 'things'.
  • overall Mireya just has to be in the mood. The mood for you, the mood for the activity, the mood for the situation. Everything has to be right and aligned (including the stars) for Mireya to be an active participant. The flip side is when she is comfortable, she is easy and flows. That is her nature. Jalen, Paris and Makinley are super extroverted, animated and in the mix off the bat. Makinley has a bit of reserve depending on how you catch her, but Mireya will make you work for it.
It's been a long, full day. Reya finally drifted off to sleep and I'm about to do the same, but I must share the funniest thing that happened today. We have this whole mealbaby sign up for meal delivery to the house and for food drops to the hospital (thank you so much). My dear friends the Grinnages were on tap today for food detail at the hospital. They stopped by Whole Foods and picked up some fresh 'juices and berries' for us to enjoy. Kyle is a vegetarian and the Queen of 'fusion'. Over the years, she has managed to turn me on to some interesting things. I'll also admit there was a time or two I've not cared for something, but I'm always open to trying it (within reason). Kudos to her and Whole Foods on those smoked chicken quarters, they were delicious.

Okay so the amusing part of the story is on the Transplant floor you cannot have fresh fruits, vegetables, lives plants, flowers, etc. So when Mother Earth rolled up here with her pint of fresh strawberries, and several veggie, bean and rice concoctions she was looking like Snoopy when he arrived at the hospital to find ole' girl and the booming music/voice came on saying 'No Dogs Allowed'. Needless to say she had to reroute this meal to my house before she set off a floor wide outbreak. I know we will be laughing about this for quite some time. We (Quentin or I) can eat these types of things, but the patients cannot be exposed them. It has to be consumed off the floor. Lesson #1 when your vegetarian friend says I'm coming to bring you a meal and puts 'TBD', get the facts. Love you Kyle!

Save the Drama

Seems that when all hell is breaking loose there is always something else that attempts to rival your peace. I'm not accepting other people's drama. I have no place for it and quite frankly don't care to deal with it. When did concern and care become the basis for madness. Some times being the 'spokesperson' even with the best intentions can back fire. Some times you do have to cut the ties that bind. The dynamics of relationships and friendships change. There is nothing wrong with it. It's called growth. It's also called the process of elimination that shows you what deserves your time and who is worthy of being a part of your life. The hurt and disappointment can run deep, but time does heal all wounds. It's interesting 'how' things happen and at what seems the most inopportune time, but a lot of times it's the set up for the next level of elevation. Or it's the forced hand and moment of a decision you never would have made on your own. Baggage is a beast. Whatever you can off load do it and do it often. Everyone has some sort of baggage (Louie, Samsonite, Ziploc?) There's no sense in carrying yours and someone else's. En Vogue laid the track and a friend of mine recently pulled this one out of her jukebox "Free Your Mind" and the rest will goes on to speak about accepting all people without being shallow. Everything happens for a reason (I know that's the staple cliche), but invariably at some point you have that moment where you realize the 'why' even if it's years down the line. We can't control other people, their thoughts, actions or inaction. Some things are salvageable others are not worth their weight in heartache. Sometimes clarity enters the picture during times of little emotion and you realize some things are worth putting yourself on the line or fighting for. Learn the lesson and move on, or it will come back to visit you at some point. 'Free you Mind' and the rest will follow.....

Sunday, July 3, 2011

3rd Day's a Charm

Reya did great through both rounds of chemo without any issues. PRAISE GOD! I prayed for a better evening and last night was very restful and uneventful. She definitely needed platelets. Her count was less than 5k. In the last week or so she's been losing them at much more rapid pace. The timing of the transplant is very apropos.

Quentin has not been feeling his best, Makinley is getting over her infection and Jalen is trailing along with a inconsistent cough. They are all banned from the floor, but have been sending video messages to Reya which she has enjoyed very much. I'm thankful for help today that allowed me to go home for awhile and see those other little people and give Quentin a break to rest. Kinley decided she needed to take a nap as soon as I arrived, so Jalen and I went to the pool. It was great to have some time alone with him and for him to enjoy a 'regular' summer activity. We had a lot of fun.

I believe Reya's body is becoming more acclimated to the chemo and meds. When it is given at the minimal rate she hasn't had any of the problems we experienced yesterday. The Steroids have her eating everything in sight at times and then the chemo has her barely wanting to eat a thing. So we just accept whatever she decides to do as far as nutrition. You want three packs of cheese and crackers, gogurt and a milkshake, go for it. Her cycle of Benadryl had the reverse 'desired' affect. She was talking a mile a minute and bouncing off every wall in the room earlier today. The medication she's taking to assist with eliminating excess fluid seems to be working. I'm going to see if I can have a line put in with some of that and eliminate a few lbs. while I sit here.

Mireya misses Daddy and her brother and sisters. She's been a bit teary tonight because she wants to go home and be with them. Hopefully everyone will be better in the next day or so and able to come back up here. We are three days away from the transplant procedure for both Jalen and Mireya. We are thanking God for a successful procedure and that Mireya's body will accept the marrow and it will settle in her body and function as it needs to so that she can be well. That sounds so simple and that is it in a nutshell with a few variables, but everything from that point has to occur without issue or added illness for complete success. So please continue to stand with us in prayer over this procedure and all the processes involved.

Romans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

Saturday, July 2, 2011

On the 2nd Day of Chemotherapy

those meds gave to me...headache, fever, nausea/vomiting, stomach and body aches, mouth sores, throat irritation and there was no partridge in a pear tree. Yesterday was a good day, but the wee hours of this morning were rough. It was really unsettling to watch Mireya experiencing so much pain and discomfort. I did what I could to console and comfort her. The remainder of my energy was spent praying for relief from the symptoms and for rest.

We were aware of the variety of effects the medication 'could' have, but really didn't imagine we'd experience just about all of them on Day 2. It's amazing how the medication affects people differently. Some kids have none of these issues and others maybe just a few. The chemo coupled with ATG has been quite intense to Mireya's little system. The response to the meds made it necessary to dial back the speed in which she was receiving them and that made a big difference. We've been using a few household favorites in our arsenal to counteract these symptoms (Tylenol, hydrocortisone and Benadryl). My girl was hollering at 3am that she needed Tylenol. If pain becomes a major issue, they plan to give her a morphin drip to help alleviate her discomfort.

Once the medications were complete, she began to feel better and by mid afternoon was up playing, laughing and having fun. Reya's platelets appear to be low because she has a considerable amount of petechiae all over. She is also retaining quite a bit of fluid. When we arrived Mireya weighed 29lbs. She is now up to 32.5lbs in one day which will likely require another medication to help eliminate the extra fluid. We're gearing up for Round 2 and I'm praying it will not be a repeat of last night.

Friday, July 1, 2011

One Down, Many More to Go

We begin chemo today in preparation for Mireya's transplant next week. I had a hard time going to sleep, my stomach was turning and I felt if I didn't go to sleep then somehow morning wouldn't come. Of course that train of thought yielded nothing other than me back at the hospital extremely tired.

We received a beautiful surprise when we arrived on the Unit this morning. Volunteers from Connor's Heroes came in prior to our arrival and decorated Mireya's room. It is pretty, pink and all things Princess. They filled it will tons of games, activities and things to enjoy during our stay here. The smile on her face said it all. They had individual gifts for Jalen and Makinley, and even threw in some things for 'Mom', a memory foam pillow, snacks, a cool insulated cup and some other goodies. We're so thankful to Connor's Heroes for doing all they could to make starting this process special for us.

In addition to the chemo, Mireya has received quite an array of medications to support and offset common issues associated with chemotherapy. Day One of treatment is complete and overall, she's had a really good day. The nursing staff has fallen in love with her sweet and gentle spirit. We pray the days ahead will also be favorable.