Tuesday, May 31, 2011
We spoke about typing the full-blood siblings to see if either are a match for her. This process can be lengthy because of insurance approvals. One thing that is of concern is the need to give Reya these transfusions repeatedly. The hope was to give them sparingly and only as needed, unfortunately 'as needed' has become every week. We've had 4 in the last 10-12 days. This could prove to be a factor when they actually type the siblings because her body has and will continue to take on the genetic makeup of the blood products she has received. Mireya is proving not to be a classic ITP case. The team has been more casually using Aplastic Anemia in our discussions. The Dr. shared today that she could count on one hand the number of kids whose systems have rallied back after steroid use alone. The 'standard' treatment for Aplastic Anemia is a Bone Marrow Transplant (BMT). So as much as I don't want to have to walk down this path and I know that God can INSTANTLY stimulate her body and system to do what it needs to, it would appear we are moving closer to that phase of treatment. We'll discuss everything in more detail at our scheduled follow-up on Friday. I must admit I'm feeling really down and low, but I won't dwell here to long. Even in the midst of all this, I have much to be thankful for. In another reality, it could be worse and trust me week to week my eyes and heart see what the worse could be.
"Come to me, all you who are weary and burdened and I will give you rest." (Matthew 11:28) God allows us to go through trials so that we will come to Him with our problems. It is very similar to the poem 'Footprints in the Sand', it is during the trials that we are carried. God doesn't expect us to go through the trials alone. He wants us to come to Him and have Him carry us through. We don't understand everything and we don't know why, but through it all God will be glorified and lifted up. We continue to trust and draw strength from him to endure all that lies ahead.
Wednesday, May 25, 2011
Full to the Rim with Brim...that's what the fishbowl was like today. I saw about 4 transfusions, 1 admission and a couple of chemo preps. I was heartbroken to see a first time mom and her 5 month old little boy come in today. The family was referred to MCV Hemoc by their Pediatrician. They drove into town last night to begin the process of tests, draws and close monitoring to determine what is going on in his sweet little body. Hearing his cries and seeing the IV line in his tiny little arm was a lot to sit through. I tried to psych myself out, but I couldn't contain my tears. I spoke with the family briefly and told them I would be praying for little Tucker.
I've been doing my best to wear my smile and brave face, but this is very emotionally taxing. I realize that I 'have' to allow myself time to decompress. My knees want to buckle under the weight of the emotion, but my faith and my trust in God tells me EVERYTHING is going to be alright. There are just some things we are going to have to endure before that time arrives. Mireya makes it easy. She's come to understand that when we go in she has to have blood taken, an IV put in and there will be a considerable wait. Makinley on the other hand has a threshold of a few hours and once that is surpassed it's not cute. It's not her fault, but I'm going to have to plan differently for future appointments. There was no amount of movies or snacks to offset her upset today. While we're on snacks, we've definitely noticed an increase in Mireya's appetite (this is an effect of the medication). This girl could probably eat her brother under the table and that says a lot because he is going through a growth spurt and is hungry every 2 seconds. Not to mention he's got about 15lbs on her. I thought we'd reasonably planned out snacks, but suddenly Reya was ravenous. She went through grapes, juice, chips, a granola bar and a fruit roll-up in about 25 minutes and asked for more...we'll have to pack her and this endless stomach a lunch next week.
I have yet to hear from Allie's Mom on how her procedure went yesterday, but I trust that everything went well and her body is responding favorably to the transplant. Continue to keep Allie in your prayers. We are happy the majority of Reya's counts are going up. A friend shared with me this past week how she recalled the mood of her family's day hinging on receiving those numbers. Two out of three is better than where we were last week, so we'll take it. Our hope is the medication is working as intended and balancing out her cell counts. We are scheduled for draws/counts early next week and then a follow-up visit with her physician to discuss treatment and timelines. Several results from her testing will also be available to review. We are trusting that her levels will continue to rise.
Phillippians 4:4 says Rejoice in the Lord always. I will say it again Rejoice. God is moving and we are definitely rejoicing!!!
Friday, May 20, 2011
Pet therapy made a visit to Hemoc while we were there. Stewie was a sweet, little fluffy pup that played the piano, bowled a four bagger and danced a jig. It was awesome to see the little ones light up as he made his way around the Fishbowl. Even the weary few that had just completed radiation managed a smile or two. Mireya's counts are up. Praise God!!! I expected them to be, especially with having the transfusions earlier this week. Her white cell count is still lingering, so we'll continue to do our best to guard her as best we can against infection and illness. Her Dr. explained that blood transfusions are typically good for about one month and the platelets 5-7 days, so next week's check will be key to see if the steroid is effective in helping to maintain her levels. Overall the physician was pleased with where we are today. We'll take it. This is a day to day journey and we are celebrating every positive report. Every increase is a victory!
We are praying for our new friends as they prepare for a stem cell transplant on Tuesday. This beautiful girl, who I will call 'Allie', has such a sweet spirit. Allie will remain in the hospital for 3-4 weeks following the transplant and will have a closely monitored trek to reach the 100 day mark/milestone. Typically after 100 days the worse of the procedure has passed and she will be on the path to recovery. We're believing God to oversee every detail of her procedure and for her to experience no issues or complications as her body works towards restoration and optimal functionality. Thank you for your prayers! God is so good!
Tuesday, May 17, 2011
Overall Mireya was in good spirits. It has been a long, exhausting day. I felt like I should have collected a paycheck when I left. We'll go back on Friday to retest counts and see how her body is responding to the medication. Today was tough. I was so grieved. It took everything within me not to full out cry while there, even still a few tears streamed down my face as I observed so many children in varying stages of cancer and treatment. Of course I wish I had thought to have a conversation with Mireya about why some of the kids wore masks or had no hair before curiosity got the best of her as she blurted out her 'why's' in a waiting room full of people. Well at least we now have that covered.
Meet the Hemockers! This appears to be a very close knit community of people. We met a young lady today recently diagnosed with hodgkin's lymphoma. It was very informative speaking with her and her Mom. They knew a lot about many of the kids and families dealing with autoimmune and oncology diagnoses, including the current case of Aplastic Anemia. They gave us the low down on appointment times to shoot for, parking, places to eat and things to do while working through what could become a long process of diagnosis and treatment. Last week it was medical information overload. This week for me it's been emotional overload. We left the hospital and I came home, put on my pajamas, jumped in the bed and just cried all the tears I wanted to shed throughout the day . I'm thankful that my husband is there to carry the load and comfort me when I'm feeling to weak to rise to the occasion. God knows all things and he remains in control. I don't doubt that for one moment. Today we were disappointed that the counts decreased, but we remain encouraged. We're moving closer to understanding what this is and getting Mireya better. She's feeling better already. Her complexion is fresh and lively, and her energy and appetite have increased. We're believing these next few weeks of steroid treatment will bring forth favorable results and that she will not have to deal with the many side effects of these drugs. Even at a low dose, these meds are hard on the system. Please also pray for me, physically I'm not feeling my best. I'm hoping I didn't pick up anything while at the hospital. More to come later this week. Prayer changes things and I thank you for your continued prayers for Mireya.
Monday, May 16, 2011
Why are people 'challenging' me today. These people better be glad I'm saved. But seriously, you really have to watch who you step to and how. Do you realize that outside of speaking to your manager, I could be across this counter in 0.2 seconds. Do you also know that I can follow you and you 'finger' to your final destination. It's been done before! In this day and time, it is not wise to go for foolish. You may encounter the wrong person and based on the few weeks I've had, I could do some damage with all of this emotion. There are people that will put their religion and relationship on the shelf momentarily to 'get it in where they can fit it in' and that ain't right! 'Thank You' Lord for deliverance, because as a kid, I was always the one in a fight or instigating one. So as I began to breathe in, breath out, and creatively visualize myself anywhere but on the other side of this madness, Jesus Loves Me (an apparently them) came to mind and helped me maneuver pass the moment. I need a massage, a namaste, or better yet a visit to the chiropractor. My friend Kyle swears it cures 'all' things in her world. For now I'm going to sit in 'time out' and pray. Pray that no one else makes me mad today.
Saturday, May 14, 2011
Here's a list of some of the songs rolling on my Ipod this week. Please take a moment to share some of your favorites and recommendations in the 'Comments' section below for my new Playlist - Healing for Mireya.
He Knows My Name - Isreal
Rejoice - Isreal
Alpha and Omega - Isreal
I'm Not Forgotten - Isreal
Can't Give Up Now - Mary Mary
For the Good of Them - Daryl Coley
He's Able - Kirk Franklin
You are My Song - Fred Hammond
All Things Are Working - Fred Hammond
Just Ask in My Name - Rev. Milton Brunson
It's Coming - Lori-El
He's Already Provided - Martha Munizzi
I Believe God - Martha Munizzi
I Know The Plans - Martha Munizzi
While You Worship (Chandler's Song) - Martha Munizzi
With All I Am - Hillsong
How Great Is Our God - Hillsong
The More I Seek You - Kari Jobe
I Need You Now - Smokie Norful
Because of Who You Are - Vickie Yohe
He Loves - New Breed
Jesus - New Breed
Healer - New Breed
Jesus Never Fails Medley - New Breed
It Aint Over - Maurette Brown Clark
The Battle is Not Your - Yolanda Adams
More than Just a Melody - Yolanda Adams
Yet Still I Rise - Yolanda Adams
More than I Can Bear - God's Property
I Need You to Survive - Hezekiah Walkter
Jesus, Jesus, Jesus - Rev. Timothy Wright
Stand - Donnie McClurkin
Wailin to Dancin - Donald Lawrence
Say a Prayer - Donald Lawrence w/Faith Evans
Norman Hutchins - All Things Work Together
Song of Soloman - Ben Tankard
I Surrender All - Cece Winans
Eye on the Sparrow - featuring Lauren Hill
Lord's Prayer - Gary Oliver
We know that God is a Healer. He is Jehovah Rapha (The Lord that Heals). Continuing to pray and thank God that Mireya's health is increasing daily!
'Mi Hija' spent the last two weekends getting all dolled up not for one prom, but two. Two weekends of exquisite beauty, carefully picked corsages, boutonniere pinnings, staged pictures around the lake, pricey meals and post prom parties. My girl rocked those dresses...ahem I mean Paris looked so beautiful. I'm so thankful I could steal away from the hospital to share in these moments. We send our love to the family of Avery Spence. A dear classmate and friend taken away to soon. Gone but surely never forgotten. Your light, your love and the beauty of your essence will continue to live in Spirit.
Paris has about 5 more weeks of school and she will be a certified bi-lingual high school graduate. I'm so proud of her. She has carried a Honor's, AP and Dual Enrollment load this year. She stepped out on faith four short years ago to apply to the Spanish Immersion program at Manchester. This decision found her leaving her friends, classmates and comfort zone to become a Specialty Center Student. I'll never forget that first day. Her stomach was in knots because she was walking into a totally unfamiliar environment not knowing anyone. Fours years later and she can't go anywhere without seeing someone she knows. In a few short months she will be making that same transition to college as a Lynchburg Hornet. Lynchburg is a small, private Division III school. When we visited LC we loved it. It just felt right. Paris had several college choices, along with coaches hoping to have her become a part of their Athletic Program. We believe she has made the decision best suited for her academically and athletically. This is an exciting time...sniff, sniff.
On Injured Reserve this week - Paris and Mommy. Paris had a small incident while sliding into 2nd base early this week. It wasn't until she took her cleats off that she realized that slight discomfort in her foot was now a throbbing pain, coupled with the inability to apply pressure or flex her foot. Her team is in the home stretch of their regular season games and this couldn't have happened during a busier game week. We spent most of Tuesday at the doctors office getting counts done for Reya and an x-rays done for Paris. Her pediatrician believed her the fifth metatarsal was fractured. Apparently this area of the foot is easily prone to injury, but we were delighted to find out it is just a bad contusion. Ice, elevation and meds have allowed her to get back out on the field.
I, on the other hand have been enduring varying degrees of knee pain. This has sidelined me from any real involved workouts or activities for the last few months. I've been putting off going to the Dr. because I really didn't want to hear him even imply that I 'might' need surgery. Well he didn't imply anything, he just straight up told me I had a meniscal tear, some cartilage issues, and arthritis in the right knee and some sort of cartilage issues beneath my left knee cap likely due to overcompensating for what ails the right knee. Paris got off with ice, elevation and meds and I'll be scheduling my 6th knee surgery.
There is so much going on right now. The beginning, the end, the expected and the questionably unknown. I continue to pray for the strength to keep it all straight in my head and the capacity to do what needs to be done. This is a very important time in Paris' life as one chapter comes to an end and another begins. We want to be able to celebrate her accomplishments and have the time to also prepare for this next exciting journey with minimal conflict. Did I mention I really don't have time to be laid up dealing with a bum wheel! I'm going to need to ride this one out for a while. I'm praying that things 'flow' as they need to.
Friday, May 13, 2011
It is to early to diagnose what the issue is, but there are several conditions that can cause your bone marrow to behave this way. In many instances it can recover and begin to function properly on it's own. We are believing Mireya's body will begin to respond and her bone marrow will begin to function and operate as it was created to. A series of extensive tests are being conducted to rule out additional factors. If Mireya's levels do not begin to increase within the next week, they will begin Phase 1 of Immunotherapy. Phase 1 consists of administering a low level steroid. This Phase is designed to stimulate the system and prayerfully maintain her levels and keep them from falling any lower.
We were seen in Pediatric E/R on Wednesday night because of the presence of new petechiae on her chest, neck and in her mouth. The levels taken that night were low but they opted against doing a platelet transfusion pending our appointment today. The levels today were slightly higher giving the Drs. a hope that her system may be beginning to respond favorably. If Phase 1 doesn't produce the desirable response, then we move to Phase 2. Phase 2 requires a higher dosage steroid along with a 'LMNOP' drug designed to 'reboot' her bone marrow system. Please don't google LMNOP or you'll probably get the 'ABC' song in return. The actual letter sequence for the second treatment is GM-CSF.
If this Phase fails to show promise and the large scale testing doesn't show anything conclusive, then we our final option is a Bone Marrow Transplant. Aplastic Anemia would likely be the diagnosis at that point. The process of a Bone Marrow Transplant is long and tedious both in preparation and recovery. Mireya's siblings would need to be 'typed' to determine if they are a match for her. This is the most ideal scenario. Other Donors can voluntarily donate and be matched via the registry, but insurance stipulates they will cover the cost of siblings to be 'typed'. We do not expect to get to this point, but we were certain to ask a lot of questions about the process in order to fully understand what is involved. I heard porta-cath, chemo-therapy and a lengthy hospital stay. And to that I say Jesus, Jesus, Jesus! We definitely feel better as a result of having more information and understanding the treatment options and plan. The Hemoc team is awesome! The Drs. are not in a rush to diagnose and treat, but we are in 'waitful watching' to fully gather all the necessary information and determine where we go from here.
Reya's counts will be tested each week for the next few weeks. With marked improvement we do nothing. If the levels decrease we start Phase 1 and only if the levels go below the critical thresholds will we have to do any type of transfusion. The Drs. are being very cautious about transfusions because over the course of time Mireya's body will take on the genetic makeup of the blood products received. If we can manage without having to do any type of transfusion, that would be essential for future matching purposes, if that becomes necessary. Our prayer remains that Mireya's health will increase on it's own. This process can take 3-6 months to see marked improvement. God can turn this around in an instant. So we rest in 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. Please join us in lifting this up before the Lord. Prayer changes things!!!
No matter what the count is, there is one number that cannot be discounted. One God and he is #1. John 3:16, Psalms 23, Isaiah 41:13 and Romans 15:13. He's all up in the numbers, even has a chapter just for that, but don't tell the lottery folks (thanks AJ). He always remains bigger than our problems or situation and is worthy of our praise no matter what happens. Stay tuned....
Have you ever had days where your mind has raced all day and your body is weary and restless all night and you just can't seem to find sleep? That is sort of where we are right now. I've been praying for the peace of God. The peace that says, no everything is not alright at the moment, it doesn't feel right, it doesn't look right, but in the end it's going to be alright. In the end regardless of the duration of time, we win and will have the good report. Is it good now, not necessarily, but it will be.
We've found ourselves in this place before, trusting and totally relying on the Lord to see us through a situation. Spiritually I'm holding on to what I know he can do. In my physical state, I've had moments of being a total wreck. I've cried and been overwhelmed by it all. It is natural and it's not saying "God I don't trust you". God is looking at and is moved by our faith. Our faith tells us that he is the same God that he was when he healed the sick, walked on water and raised Lazarus from the dead. He is still performing miracles and is still in the business of healing the sick and turning situations around. That is where our faith lies. It's very difficult to understand certain situations and things you'll have to go through and endure, but we are here for the duration, essentially to fight for life.
It's hard for me to frame up how things are going to be, so we just take it one day at a time. We trust the Lord and I'm reminded of the constant struggle and adversity we faced with having children. Loss after loss after loss. During that time I couldn't even look at it in stages and phases of weeks or trimesters, I had to seek the Lord on a daily basis and literally just thank him for what was going on in that day. I've been disciplined enough to know the importance of having hope and being motivated by what I know God can do, but we have to live in today and thank him for what he does each day in this process. This is going to be a process. It's going to require more than just us. Quentin and I are fiercely independent people. We have to learn through this process to accept help. It's not that we don't need it, it's just that we are so used to relying on each other and pushing through a lot of things good, bad and indifferent via one another or a much smaller group of resources and people. If what we've seen over this short period of time is any indication of the tremendous love and support of friends and family, then we are going to be just fine.
Everything is going to be fine. The God that allowed us after 6 failed pregnancies to have 3 beautiful children is the same God we serve today. God said he would 'never leave us or forsake us' and we are clinging to that truth. I would lay down my life for my sweet girl, but that is not my reality. My reality is, I have 4 beautiful children who are all living today and one is just not as well as she could be, but we are trusting, believing and holding on to the promises of God.
Philippians 4:7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Tuesday, May 10, 2011
Yesterday was not the best day of information. Mireya had a few areas of petechiae on her mouth and she began complaining that her stomach hurt late in the evening last night. I took her in to the Pediatrician's office for a CBC (capilliary blood draw). The counts across the board are low. Her platelet count is down from 71k to 16k. When we were in the hospital last week, they wouldn't consider allowing us to be discharged unless the count was higher than 16k, so I mentally prepared myself to have to be re-admitted. Instead we were given some 'high level' criteria to keep an eye on that would require us to go back.
Mireya's white blood cell count is low, so it is imperative that we guard her as best we can from infection. Fever is one of the first indicators of possible infection, so any sign of a fever is definitely on the 'return' list where they would administer antibiotics intravenously. Any additional petechiae, bruising or bleeding would also necessitate us immediately going to the hospital. If the counts are lower, another transfusion would be given. We will be at the Hemoc office first thing Friday morning to get the complete findings from the biopsy report. In the meantime I need to place our Princess in a padded room with a helmet and straight jacket because her activity level needs to be zero. We are doing our best to minimize her activity, but she's an active 4-year old that just doesn't get it. Overall she appears to feel well, but we have noticed she is slowing down some. The pediatrician did share some snipets of information she received while speaking to the Doctors at Hemoc. Everyone is trying to get an understanding of what the underlying issue is, but we are going to wait for the full report before we get too anxious or amped about a word here or there.
The bible tells us 'Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your request be made know to God'. God knows it all and he is in control of it all. He is whispering in my ear Psalms 46:10, Be Still And Know I am God.
Monday, May 9, 2011
Mireya is doing great today. The bruising is starting to fade and her appetite has increased. She is so happy to be home with her brother and sister, playing with her friends, and changing her outfit one million times a day. I tell ya kids don't miss a beat. We are doing well also. Friday can't get here soon enough, and we are continuing to believe for the best!
Saturday, May 7, 2011
Thanks again for the calls, the meals, the princess packs, cards, balloons, your time, your prayers...everything. We have some follow-up appointments next week to help us determine precisely what this is. It has the classic signs of ITP, but could also be another condition called Aplastic Amenia. So we still wait, but from the comfort of our home, with confidence that Mireya's health is increasing and with faith that it will continue to do so. We'll share more as we know more.
We often find ourselves looking for ways to bless others in need. It has been an incredible feeling to have the things that we need be provided or coordinated for us. Prayers are going up all over the nation right now on our behalf. How incredible is that. We're thankful that through social media, text messaging and a up and coming blog (shameless plug) that we've been able to share our story and keep everyone updated and in the loop. It's hard to just exist and manage your life from a hospital room. I think of the many families for whom this has just become routine or the norm. I've seen a lot in these few short days and while we are fighting our own battle here, I've been in prayer for many of the other children and families I see. I imagine this gets old and your life sort of stays in flux.
Balancing your real life, along with everything you are suddenly hit with when something unexpected like this happens, requires coordination, visitation, nutrition and seriously 'real' sleep has to be factored in there somewhere. Coordination of who has to be where and when. Some things we just have to sideline until this is over and we can slide back into our regular routines. But we're trying to keep it as routine as it can be given the circumstances. Visitation really has to be handled delicately. We love that so many people want to come and spend time with us while we are here. It's great to have support in that way. The most important thing is ensuring Reya gets the rest she needs and is not overwhelmed in the process. Nutrition, well we all have to be fed. I love that friends have stopped by to bring us meals. It's safe to say that it's day five and I'm no longer excited by Subway, Chik-Fil-A or the Cafeteria. I mean I could learn a thing or two from Jared and maybe come out of this pounds lighter, but I really don't want another sub from Subway. Everyone loves Chik-Fil-A, but that too has lost it's appeal and I really want to still like going to Chik-Fil-A when I leave here. The cafeteria has some good options, but I've really been overwhelmed every time I go in there. It has this 'Regulars' feel and flow to it and I feel like a complete foreigner. Sort of like the first time you ever went to Starbucks to order that drink and you heard everyone before you hollering out Grande, Venti, Soy, no whip blah, blah, blah and then it's your turn and your are clueless. Sleep deprivation goes with the territory. I think I could go to sleep today and wake up next week. I'm so tired, but my mind has been so occupied it's been difficult for me to have quality rest, but when this is over, sleep is definitely on the top of my list.
'Thank You' to everyone who asked what can I do?, what do you need? and those who stopped by to sit and entertain the children so we could just have time to take care of things. We know no one is holding it against us, but forgive us if you've sent a message, text or took a moment to phone us and you have not personally received a response. At this point keeping up with all the love, care and concern would require a lot but I will get around to it myself because I appreciate that you cared enough to do so. Words can't really express our gratitude and how touched we've been as a result of your kindness.
Friday, May 6, 2011
I arrived at this hospital with preconceived notions based on negative press and stories I've heard over the years. Surprisingly, their Hematology and Oncology Department (referred to as Hemoc) is one of the best in the area. They also have a really awesome Pet Program. Reya was visited this week by Emma, a sweet and lovable Jack Russell who just wanted to cuddle up next to her and have a afternoon nap. He had a busy day visiting all the little patients on the floor. The second day Chip came by to say 'hello' and play a tune for Mireya on his piano. It was so adorable. His owner, recognizing Reya was all about "Princesses", shared a photo of Chip in a costume contest dressed as Tinkerbell. She got a real kick out of that. The preschool/elementary school teacher on staff stopped by to introduce herself and invite Mireya to come and join other preschool age kids for a variety of fun this week. Everything from making Mother's Day cards, arts, writing, singing songs and playing the guitar. The playroom is decked out with tons of fun toys, games and books to include a fully equipped kitchen center. We've been in there everyday and I've about had my fill of tea, plastic veggies and wooden cookies...yum! The hospital's Child Life Program is quite impressive too. Yesterday they brought coloring books, crayons, bubbles, sidewalk chalks and videos for Reya, Jalen and Makinley to enjoy. Today they brought spin wheels, Legos, Princess Puzzles and Princess Coloring pages for the kids to have and the biggest hit of the night was the Window Markers. Imagine Jalen's face when he arrived to see a 200-pc Lego box waiting just for him and there wasn't a free space left on either window after we were all done coloring, writing and scribbling.
We also spent time this week out on the Child Life Play Deck. How cool is it to go outside of these four walls to run around and get fresh air, surrounded by flowers and greenery. The kids enjoyed using the sidewalk chalk, swinging on the swing and blowing bubbles off the rooftop. The view from there is very tranquil and peaceful. The children have also enjoyed watching the helicopter flying in overhead. For them it is really cool, for me I imagine the tragedy of someone having to be medevaced to the hospital for care. I have witnessed this at least five times this week. The Child Life Center is located on this floor. It brought tears to my eyes to see all the things they house there for kids to enjoy through out their stay here, to include clothing for all ages. We purge toys and clothing items several times throughout the year and I will definitely be making donations to this program in the future. This has been a very positive hospital experience for us. There are volunteers that have stopped by the room each day to sit or play with Mireya to allow me to run errands or just to have a break. I mean young adults truly excited about brightening a child's day and putting a smile on their face. They also have a Grandparent Volunteer program of more mature adults that enjoy coming to sit, read, hold and play with the babies. This has been quite an ordeal, and even with all these great things to keep our time and minds otherwise occupied, we wait, we hope, and we continue to pray for answers and that our sweet girl will be well soon.
Looks like I will be fasting with Mireya today. I sure wish they had told me she couldn't eat or drink after a certain hour. Her appetite has been hit or miss, but I would have given her a few extra things I know she would have gobbled down before the clock struck midnight. So now I'm hiding the stash of 'this and that' I have in the room...out of sight, out of mind (as my stomach grumbles). God is so awesome! She has yet to ask for anything to eat or drink, instead she just woke up wanting to put on her princess garb and play with her new 'Dora's Royal Adventure' block set.
We are scheduled for the biopsy at 1pm this afternoon. She will have to be put to sleep for this procedure. The Dr. will have to take a small bone chip sample as well as draw some of her bone marrow by needle from back of her hip. She barely has a hip...yikes. No stitches required, a little Tylenol for the pain and I'm sure if they put a Princess Band-Aid on the spot, she'll barely feel the projected 'moderate' pain associated with it. Funny how a band-aid can instantly cure an ouchie (coupled with a 'let Mommy/Daddy kiss it').
From there test and reports will be done and prayerfully we will be closer to unveiling the cause of all of this. Should the platelet count increase we can go home until all the results from this procedure are completed. It usually take about 5 days. If her counts don't increase we'll remain here until a treatment plan can be initiated. Continuing to pray and believing for the greatest report in the end. More to come.....
Wednesday, May 4, 2011
I had a difficult time sleeping that night. I decided to get up and do some research online too. Within about 15 minutes I was in tears from information overload and all the possibilities of what this could be. I went in Mireya's room scooped her up out of bed, wrapped her up tight in my arms and finally managed to go to sleep. When we woke up Monday morning I called the Dr.'s office and was given an appointment time within two hours. When we arrived I gave them all the pertinent information which resulted in a finger stick and a platelet count of 7. The normal range for blood platelets is 150k-300k+. We were immediately sent to the Hematology & Oncology Department at MCV for further tests and admission. The test results came back with platelet counts a little higher than 7, but considerably lower than 150k. Her hemoglobin and white blood cell counts were a little low, but not of major concern.
ITP is a blood disorder in which the immune system destroys platelets. Platelets are necessary for normal blood clotting. In children this disease may follow a viral infection. We all know we've had a few of those run through our household over the past several weeks. One of the risks with low platelet counts is risk for excessive bleeding, especially head bleeds that can prove to be fatal if not detected. So activity levels in children with low platelet counts needs to be restricted. Reya is not the heavy hitter in over-exertion, but she is a normal 4-year old child who is constantly on the move. One of the initial treatments that has proven effective in cases where the body does not produce enough antibodies is a IVIg infusion. The process take 4-10 hours to complete and once it is given, you have to wait 12-14 hours before testing the blood for increased platelet counts. The common side effects are flu-like symptoms. Vital signs are checked every 15 minutes initially, then every 30 minutes up to 1 hour. If the body shows signs of fever, or increased blood pressure the process of administering the infusion is slowed down. Reya had no problems in receiving this treatment. The Dr. did some additional testing to eliminate other key factors. We were told if the counts when up at all, she could go home.
Unfortunately the news was not favorable. Her counts had in fact gone down several thousand. We were told the draws would be done again within 12 hours, resulting in us staying another night. The news in the morning didn't get us any closer to being released, because the counts remained the same. My prospective told me it's not better, and it's not worse, what next? The Attending Physician recommended a second infusion. That was completed about 3pm. So they will do draws at about 3am and then we should have results when the Dr. does his morning rounds. It is not known why patients develop ITP. It occurs in about 1 in 200,000 people. None of the tests or results have provided the medical team with concrete evidence or direction as to why this is happening. My prayer is that platelet count will increase, but also for revelation throughout this process. I pray the Lord will lead, guide and direct the decisions and the orders of the Physicians. That they will be able to routinely determine the origin of this issue. If routine tasks and measures don't produce answers, I pray the Lord will equip them with the awareness and necessary means to figure this out. We are so thankful for the prayers and petitions going up across the world to the Lord on our behalf. Heaven is listening! Thank you for the calls, texts and emails of love and support. We are standing on the word of God, trusting that all things are working together for the good and that in the end we will receive a good report. Stay tuned....