We received a call tonight from our Hemoc Dr. informing us that Jalen is a 100% donor match for Mireya. Words cannot express our joy! God is so good and so faithful! It is hard to translate my excitement and elation across this page, but imagine my heart so full it could burst in happiness from here to the moon and back. Imagine me standing on a rooftop shouting "Hallelujah" until I can shout no more. Imagine tears in my eyes, attempting to roll down my face, but they are caught inaudibly in my chest as I'm overcome with emotion.
No need to pinch me, because it is not a dream. It is an answer to our prayers and the prayers of so many. We've placed our trust and faith in the Lord from Day 1 to move on our behalf and work it out. When we spoke with the team yesterday we discussed the odds in the matching process. They shared stories of a child with 8 siblings and not one was a match, as well as a child with only 1 sibling that was. We were told statistically there is a 1 in 4 chance for a match. So our chances actually decreased from a 25% chance (1 in 4) to a 12.5% chance (1 in 2). I remember my husband saying aloud 'God has a lot to make up with that equation' and 24 hours later we know that he did just that and more.
Most of you know the story about my bewilderment in Quentin's ability to get me to agree to have 'one more' baby. The old 'one more' trick. I'd joked with a friend earlier this week with great seriousness that maybe this was the reason for the 'one more'. Hmmm? In the wee hours of the morning I very clearly said out of my mouth what I heard in my spirit, 'Jalen is going to be the one', 'He is going to be the match', 'What an awesome gift for a brother to give to his sister'. The Drs. told us they would like for it to be Jalen because he is older, heavier and would be the better candidate. As it turns out Makinley's donor typing showed the exact opposite makeup to both Jalen and Mireya.
God is in control and nothing takes him by surprise. It's not a coincidence that Jalen, our first born child, the one who we fought the hardest and endured the most heartache to conceive and bring into this world is the one who will give life to his sister. It is not a coincidence that only 3 out of about 2 million people get this condition. It is not a coincidence that Mireya is only the 3rd instance of Aplastic Anemia that has been seen here. It is not a coincidence that of the 8 markers, Jalen matched all 8, and it is certainly not a coincidence this occurred to Mireya as opposed to Makinley who wasn't a match to either sibling. These are numbers and odds that God works in and through.
I had two prayer requests for today. One was that the procedure of inserting the Hickman line would be a success and it was. We'll be working with a home health nurse tomorrow to learn how to care for and maintain the line while it's in. My second request was that Mireya would be home in time for Paris' Graduation. She was released from the hospital late this afternoon. We have an appointment on Friday to meet with the Hemoc team as a follow-up and to discuss preparation for the Bone Marrow Transplant.
The message in this is Deuteronomy 31:8 (NIV) The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Please don't give up, don't give up hope, don't count yourself out, don't give up on God, because he surely will not give up on you. Align your thoughts and actions with the word of God. It doesn't matter what it looks like, it doesn't matter what it feels like. You have to see things through your eyes of faith. We don't always understand the why, we are not always prepared when the unexpected happens but God moves in impossible situations. Thank you for your prayers, the prayers of your churches, and please continue to keep us in prayer we now embark upon the next phase of this journey. God is not done. We are claiming VICTORY all the way until Mireya's health is fully restored!
Wednesday, June 8, 2011
Kings Dominion or Busch Gardens?
It's been years since I've been to Busch Gardens. I have friends that love BG and go there every year. We usually purchase Kings Dominion Season Passes. I really don't ride roller coasters or many other rides for that matter. I have this 'motion' thing. Riding in the back of a moving vehicle can make me sick at times. Lots of fresh air and horizon gazing helps. My trips to amusement parks consist largely of enjoying the pricey food and being amused by what I see, and people give you lots to look, laugh or shake your head at. Sad, but true.
I am a huge fan of Water parks and usually have no issue enjoying any of those tubing rides or the super slides. We used to go to Water Country fairly often so I like that KD has the roller coaster thrill and water fun. There are also Character Breakfasts, Kiddie Shows and awesome concerts to enjoy each season. I definitely want to catch Kings Fest this year with Matt Pitt and The Basement Experience. The kids have loved going to KD. It's awesome when you have a season pass because you don't feel pressed to stay all day to get your money's worth. We've gone at varying times of the day and stayed for a several hours or just a few. Obviously it has been considerably more crowded in recent weeks, but still a lot of fun.
We will have to revisit BG again sometime to really check it out and see how it's changed and compares to KD. For now I'd love to hear your thoughts on Kings Dominion, Busch Gardens or both, so feel free to leave comments on your preference. I've also added a quick poll at the top of the blog, please take a moment to cast your vote.
I am a huge fan of Water parks and usually have no issue enjoying any of those tubing rides or the super slides. We used to go to Water Country fairly often so I like that KD has the roller coaster thrill and water fun. There are also Character Breakfasts, Kiddie Shows and awesome concerts to enjoy each season. I definitely want to catch Kings Fest this year with Matt Pitt and The Basement Experience. The kids have loved going to KD. It's awesome when you have a season pass because you don't feel pressed to stay all day to get your money's worth. We've gone at varying times of the day and stayed for a several hours or just a few. Obviously it has been considerably more crowded in recent weeks, but still a lot of fun.
We will have to revisit BG again sometime to really check it out and see how it's changed and compares to KD. For now I'd love to hear your thoughts on Kings Dominion, Busch Gardens or both, so feel free to leave comments on your preference. I've also added a quick poll at the top of the blog, please take a moment to cast your vote.
Tuesday, June 7, 2011
So Close, but No Enchilada
Mireya remained fever free overnight. Her white and hemoglobin counts also increased. The platelet count remains high following the transfusion yesterday which is really good. We had a bit of an issue when the nurse came to draw her culture. She went in for the stick and it just didn't work out. I realize this can happen from time to time, however, I do not expect you to keep pushing a needle in a dead space and causing the area to swell because you are now maneuvering where you shouldn't be. Mireya was in hysterics at this point, so I politely instructed them if there was any question on whether or not they could be successful a second time, they needed to call on someone they know does it routinely and with accuracy. It would be no problem to request someone from the PICU or Pediatric E/R to come up and do it for us. I recognize some of the nursing staff are not regularly doing draws or starting IV's, but this was not the time to try to figure it out. They quickly polled their resources and called upon an All-Star on the floor and got it done.
We had a short discussion with the Medical team yesterday about intravenous catheter options. After the incident this morning, I'm even more on board with how much easier life would be for Mireya with one in place. We talked about tentatively having a pic line inserted today if there was no fever. Somewhere between tentative and 11:55 it was shared with me that it was scheduled for sometime today and that Reya could not eat after 12:00am. Gotta love a 5 minute notice for a child that is fast asleep. I did manage to get her to drink a little something, but that was it.
The team came to discuss the pic line and check out her vein prospects via ultrasound. B-I-N-G-O we have a winner, we'll be back shortly so we can put it in. We were all sharing with Reya how this would help her and eliminate the need for multiple sticks and how she could get her medication through it too. Of course she was clueless, but no more sticks made her smile. We knew she would need to be sedated for the procedure and the way they talked about it made me think it would be a fairly swift process. When we got to the PICU area I learned the procedure would take about 30 minutes, but once it was in they would need x-rays and to complete several additional things before it could be used. Essentially she would need to be over there for several hours. Mireya went under very quickly, less than 20 seconds and she was out and comfortable. The environment has to remain sterile throughout the process, so my non-sterile self was asked to come back in about a half hour.
Upon my return I learned that the line didn't take. After several attempts the wire just wouldn't thread through her vein so they had to abort the mission. No one told us there was any chance of it failing, so I was sort of in limbo emotionally. I looked at Reya still out cold on the table with several small puncture areas on her arm and my heart sank. I wanted this to be over, I wanted it to work, I wanted it to eliminate her being stuck a zillion times for meds and counts. There was a solemness in the room as we waited for her to wake up. I asked them how often this happens? The failure rate is usually 1 out of 5. The technician told me she tried, but just couldn't get it to take and after so many attempts they felt it best to stop. I'll admit it felt like defeat and then that sweet little girl opened her eyes and my only concern was to feed her and speak to the doctors about the next steps. There was mention of putting in a Hickman line, but that would require the Radiology team and they were unsure if it could be coordinated so quickly. We held off on feeding Reya just in case it could.
Mireya wasn't very hungry which was hard to believe after 16 hours, but also a blessing should she have the other line inserted. After an hour or so she nibbled on a few Cheez Its, but completely ignored the food they brought to the room. Another hour or so passed and the Dr. came in to answer any questions and give us discharge instructions. There was no reason to keep her since the fever has subsided and there was no infection in the cultures. We have to continue to be diligent in guarding Mireya against illness and infection, because even though the white cell count has increased the cells that fight infection are still very low. Fever would be our #1 indicator of infection. Reya was given another type of medication to assist her body and maintain her counts, but she would need it for at least 2 more days. The medication is given via injection which is not something I would be comfortable doing at home, nor is Quentin. We talked more about outpatient options for the Hickman line, but once the Dr. realized Reya hadn't really eaten yet she pulled out all the stops to see if she could make it happen. We received word that it could not happen today, but would take place first thing in the morning.
We are believing this procedure will be a complete success from start to finish and that Reya will be able to come home tomorrow. If at first you don't succeed, pray and try again!
We had a short discussion with the Medical team yesterday about intravenous catheter options. After the incident this morning, I'm even more on board with how much easier life would be for Mireya with one in place. We talked about tentatively having a pic line inserted today if there was no fever. Somewhere between tentative and 11:55 it was shared with me that it was scheduled for sometime today and that Reya could not eat after 12:00am. Gotta love a 5 minute notice for a child that is fast asleep. I did manage to get her to drink a little something, but that was it.
The team came to discuss the pic line and check out her vein prospects via ultrasound. B-I-N-G-O we have a winner, we'll be back shortly so we can put it in. We were all sharing with Reya how this would help her and eliminate the need for multiple sticks and how she could get her medication through it too. Of course she was clueless, but no more sticks made her smile. We knew she would need to be sedated for the procedure and the way they talked about it made me think it would be a fairly swift process. When we got to the PICU area I learned the procedure would take about 30 minutes, but once it was in they would need x-rays and to complete several additional things before it could be used. Essentially she would need to be over there for several hours. Mireya went under very quickly, less than 20 seconds and she was out and comfortable. The environment has to remain sterile throughout the process, so my non-sterile self was asked to come back in about a half hour.
Upon my return I learned that the line didn't take. After several attempts the wire just wouldn't thread through her vein so they had to abort the mission. No one told us there was any chance of it failing, so I was sort of in limbo emotionally. I looked at Reya still out cold on the table with several small puncture areas on her arm and my heart sank. I wanted this to be over, I wanted it to work, I wanted it to eliminate her being stuck a zillion times for meds and counts. There was a solemness in the room as we waited for her to wake up. I asked them how often this happens? The failure rate is usually 1 out of 5. The technician told me she tried, but just couldn't get it to take and after so many attempts they felt it best to stop. I'll admit it felt like defeat and then that sweet little girl opened her eyes and my only concern was to feed her and speak to the doctors about the next steps. There was mention of putting in a Hickman line, but that would require the Radiology team and they were unsure if it could be coordinated so quickly. We held off on feeding Reya just in case it could.
Mireya wasn't very hungry which was hard to believe after 16 hours, but also a blessing should she have the other line inserted. After an hour or so she nibbled on a few Cheez Its, but completely ignored the food they brought to the room. Another hour or so passed and the Dr. came in to answer any questions and give us discharge instructions. There was no reason to keep her since the fever has subsided and there was no infection in the cultures. We have to continue to be diligent in guarding Mireya against illness and infection, because even though the white cell count has increased the cells that fight infection are still very low. Fever would be our #1 indicator of infection. Reya was given another type of medication to assist her body and maintain her counts, but she would need it for at least 2 more days. The medication is given via injection which is not something I would be comfortable doing at home, nor is Quentin. We talked more about outpatient options for the Hickman line, but once the Dr. realized Reya hadn't really eaten yet she pulled out all the stops to see if she could make it happen. We received word that it could not happen today, but would take place first thing in the morning.
We are believing this procedure will be a complete success from start to finish and that Reya will be able to come home tomorrow. If at first you don't succeed, pray and try again!
Monday, June 6, 2011
A Glimpse of Goodness
Mireya managed to rest well overnight and has been without fever since late last night. A victory in the midst of it all. She has a fair amount of petechiae in her mouth and also some new areas on her neck. Her counts are all extremely low today. Her white count is almost non-existent and her platelets and hemoglobin will likely require transfusions today.
The plan has been that once the fever broke, she could go home with limited activity. Yesterday an additional medication was added to help boost her white cell count. Apparently, this medication has the ability to mask fever, so to eliminate any doubt, it has been removed from the rotation and we'll be monitored for at least another 24 hours to ensure the fever is gone. The task of putting in a pic line was also mentioned. Mireya has endured multiple sticks over the last several days due to the daily blood cultures. Ultimately she will require a port a cath, so we'll need to decide what is best for now.
The Bone Marrow Transplant Unit received Jalen and Makinley's typing samples. Due to the critical position we are in, the team has requested a quick screen to determine if either are a match. There are 8 markers they look at when determining a match. A good match is 6-8, with siblings if either child is a match for at least 4 of the markers then it's likely at least two others will also match. The process normally take 2-3 weeks to complete, with the quick scan it is 1 to 1.5 weeks. The Lord remains our source for everything we stand in need of. We're thankful for the peace of God, and we know his grace and mercy are sufficient to see us through as we wait.
The plan has been that once the fever broke, she could go home with limited activity. Yesterday an additional medication was added to help boost her white cell count. Apparently, this medication has the ability to mask fever, so to eliminate any doubt, it has been removed from the rotation and we'll be monitored for at least another 24 hours to ensure the fever is gone. The task of putting in a pic line was also mentioned. Mireya has endured multiple sticks over the last several days due to the daily blood cultures. Ultimately she will require a port a cath, so we'll need to decide what is best for now.
The Bone Marrow Transplant Unit received Jalen and Makinley's typing samples. Due to the critical position we are in, the team has requested a quick screen to determine if either are a match. There are 8 markers they look at when determining a match. A good match is 6-8, with siblings if either child is a match for at least 4 of the markers then it's likely at least two others will also match. The process normally take 2-3 weeks to complete, with the quick scan it is 1 to 1.5 weeks. The Lord remains our source for everything we stand in need of. We're thankful for the peace of God, and we know his grace and mercy are sufficient to see us through as we wait.
Sunday, June 5, 2011
Cuatro Dias
Day Four at the hospital and this fever just won't let up. Reya cannot be released until she is fever free for at least 24 hours. Her fever continues to fluctuate between 99.0-103.6. The fever is at its lowest following a dose of Tylenol. She did have two cycles of vitals that had the fever at 99.0 without Tylenol, but within a few hours it was back up. Her counts have continued to decrease. The white cell count is critically low. Her platelet and hemoglobin counts are both borderline for transfusions. We are holding off unless either are absolutely necessary, which could be within the next day or so. Reya is getting two different antibiotics via her IV, a steroid as well as a new medication to prayerfully stabilize her white cell count. It takes approximately 2 days to see results with this new medication, so we may be here for at least that long.
Jalen and Makinley have been typed so we should have feedback on whether or not they are a donor match within 10 days. Overall Mireya is doing well. She continues to roll with the program with very little fuss. She saw her brother and sister today and it really lifted her spirits. Today was also Paris' Baccalaureate. We were fortunate to leave the hospital for a while while Grandma sat with Mireya so we could share in this special occasion with Paris. Four more days until Graduation. I don't know what this week holds but I'm praying Mireya will be out of here by then.
This is a very tiring process of sit and wait, hope and pray, but we know she is in the best place she can be. I finally decided to go home last night at the urging of my husband to rest and just refocus my mind. I was so tired I thought I'd surely go home and fall into a deep sleep. Physically I was depleted, but emotionally I was maxed out. I found it very difficult to rest thinking about Reya in the hospital, but eventually I was able to drift off to sleep for a little while. Very little prepares you for something like this. We are doing the best we can to stay strong, but also address the sorrow associated with having your precious little girl battling through something like this. Our faith keeps us sane, and allows us to remain positive against all odds. We believe it's going to be 'better than alright' in the end. Espero que tenemos salir el hospital de prisa...por favor. Dios puede hacerlo!
Jalen and Makinley have been typed so we should have feedback on whether or not they are a donor match within 10 days. Overall Mireya is doing well. She continues to roll with the program with very little fuss. She saw her brother and sister today and it really lifted her spirits. Today was also Paris' Baccalaureate. We were fortunate to leave the hospital for a while while Grandma sat with Mireya so we could share in this special occasion with Paris. Four more days until Graduation. I don't know what this week holds but I'm praying Mireya will be out of here by then.
This is a very tiring process of sit and wait, hope and pray, but we know she is in the best place she can be. I finally decided to go home last night at the urging of my husband to rest and just refocus my mind. I was so tired I thought I'd surely go home and fall into a deep sleep. Physically I was depleted, but emotionally I was maxed out. I found it very difficult to rest thinking about Reya in the hospital, but eventually I was able to drift off to sleep for a little while. Very little prepares you for something like this. We are doing the best we can to stay strong, but also address the sorrow associated with having your precious little girl battling through something like this. Our faith keeps us sane, and allows us to remain positive against all odds. We believe it's going to be 'better than alright' in the end. Espero que tenemos salir el hospital de prisa...por favor. Dios puede hacerlo!
Friday, June 3, 2011
Diagnosis & Prognosis
The 'osis' is Aplastic Anemia. We were holding out that it could be something else, but all of the testing has eliminated assumptions of whether or not it's non-classic ITP or another type of blood disorder. We remain prayerful that her body has the potential to turn this around by itself in the same way that it has seemingly shut down full production.
We have two treatment options, a Bone Marrow Transplant (BMT) or Autoimmune Suppression Therapy (AST). If one of her siblings are a match, the Drs. feel strongest about the Bone Marrow Transplant because it gives us the greatest chance of addressing the issue in it's entirety. It takes about 4-6 months to measure the effectiveness of Autoimmune Suppression Therapy. One of the downsides to committing to AST is the possibility of additional transfusions throughout the process which decreases our chances of a sibling donor match.
The bone marrow typing process takes about two weeks. There are several markers used for matching. A good match is considered one that meets at least 6 of those criteria. Once a match is determined, Reya would be scheduled for the transplant within 1-10 days. The high level overview of the procedure is she would require several days of chemotherapy and a 4-6 week hospital stay for monitoring and recovery. We are praying that either Jalen or Makinley will be a donor match for Mireya. If either is not a match, the Bone Marrow Registry would be used to find a suitable match. In the meantime, Mireya would begin Autoimmune Suppression Therapy before a Bone Marrow Transplant would be performed with a non-sibling match, due to some of the problems that could occur. Issues could arise with a sibling match, but the likelihood of those issues is lessened when the marrow genetically comes from the same place. So please pray with us that Jalen or Makinley will be a match for her.
We have not been able to get this fever under control. It has spiked anywhere from 102-103.6. She is taking a very high dose antibiotic via IV, but has spent most of the day listless and sleeping. She did perk up when Daddy brought her brothers and sisters to see her. In order to be released she has to be fever free for 24 hours. I'm praying by this time tomorrow we will be able to go home.
We have two treatment options, a Bone Marrow Transplant (BMT) or Autoimmune Suppression Therapy (AST). If one of her siblings are a match, the Drs. feel strongest about the Bone Marrow Transplant because it gives us the greatest chance of addressing the issue in it's entirety. It takes about 4-6 months to measure the effectiveness of Autoimmune Suppression Therapy. One of the downsides to committing to AST is the possibility of additional transfusions throughout the process which decreases our chances of a sibling donor match.
The bone marrow typing process takes about two weeks. There are several markers used for matching. A good match is considered one that meets at least 6 of those criteria. Once a match is determined, Reya would be scheduled for the transplant within 1-10 days. The high level overview of the procedure is she would require several days of chemotherapy and a 4-6 week hospital stay for monitoring and recovery. We are praying that either Jalen or Makinley will be a donor match for Mireya. If either is not a match, the Bone Marrow Registry would be used to find a suitable match. In the meantime, Mireya would begin Autoimmune Suppression Therapy before a Bone Marrow Transplant would be performed with a non-sibling match, due to some of the problems that could occur. Issues could arise with a sibling match, but the likelihood of those issues is lessened when the marrow genetically comes from the same place. So please pray with us that Jalen or Makinley will be a match for her.
We have not been able to get this fever under control. It has spiked anywhere from 102-103.6. She is taking a very high dose antibiotic via IV, but has spent most of the day listless and sleeping. She did perk up when Daddy brought her brothers and sisters to see her. In order to be released she has to be fever free for 24 hours. I'm praying by this time tomorrow we will be able to go home.
Be Careful What You Ask For
I was having a bit of banter with my sister yesterday and telling her that I needed a Road Trip. Well I imagined quite a different journey, but I hopped on the highway this morning, hit a few tolls and pulled up to the Pediatric E/R. Mireya had a high fever and was complaining of a headache. Fever was one of the conditions we received a few weeks ago as a 'Go Straight To the Hospital' card. We've been here for several hours now. The fever has subsided some, but the headache is more persistent. As a result we had to do a quick CT-scan to ensure everything is ok. The menacing trio (platelets, hemoglobin and white cells) are stirring up some alarm, as they are all down across the board. It's only been 3 days since her transfusion and the platelets alone have dropped by 60k. We will be admitted shortly so that her counts and blood cultures can be monitored closely. She is also receiving antibiotics intravenously. We hope to have some answers soon. In the meantime, it was a short drive down and my girl is exactly where she needs to be to get better. Thank you for continuing to pray for us and Mireya's health. We firmly believe that despite the circumstances, ultimately she will be well. More to share as it unfolds.
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