Today we got some devastating news. Michalla has a friend named Kaitlyn Conner that she originally met when Michalla was originally diagnosed in Aug 2012. About 2 months after Michalla entered Primaries with AML Kaityln entered primaries with the same diagnosis. Kaitlyn is one year younger than Michalla. It was nice for both of them to have someone close to the same age that could relate with what they were going through. Both of the girls went into remission and went home. Michalla got rediagnosed in January of this year. One year exactly after her last chemo. One year after kaityln's last chemo her cancer came back as well. So they were both back in primaries again. During this time they have stayed in contact and especially since being back in the hospital together have been "talking" quite a bit and exchanging notes and gifts.
Kaitlyn was engaged when she found out the leukemia had returned to an awesome young man named Conner. The day before she entered primaries they got married in the Salt Lake Temple. I had the privilege of sitting by Conner in church the last week we were here and chat with him a bit about kaityln's. They were worried because she was not feeling well at all . I was also lucky enough to hear his testimony and faith through the closing prayer he gave.
Yesterday we found out that Kaityln had continued to get worse and was on life support. Then this morning we found out that Kaityln died last night. The news has been devastating to Michalla. She obviously feels so bad for her husband and parents. She is also expressing guilt that Milly died and now Kaityln died and she has been allowed to live. There have been a lot of tears shed today. Michalla is really going to miss being able to text Kaityln and have someone her own age to relate to. It also reminds both of us how serious this battle is that Michalla is fighting and how blessed we have been. Kaityln died from an infection she caught that her body couldn't fight with a lower immune system. Michalla has been walking around at home the last month with a zero immune system and didn't catch anything even with all those issues with her cyst. Why have we been so blessed? It reminds me that every day with Michalla is a gift and I am so thankful for a loving Heavenly Father that has a plan for everyone.
I am grateful for the comforter and for my knowledge of the plan of salvation. I know because Kaityln was married in the temple her and Conner can be together forever and their marriage didn't end in this life. I am thankful of my knowledge that The Lord is in charge ( turning out to be a constant theme of this blog) and whatever happens to Kaityln or Michalla is part of the Lords plan and a bigger picture outside of this earthly life.
May God bless All of Kaityn's family during this difficult time. I know I ask for prayers daily but please pray for the comforter to be with them as well as Michalla during this time.
Wednesday, April 30, 2014
Monday, April 28, 2014
Donor Found!
As of 5:00 AM this morning, Michalla is back in the hospital starting her last (we hope forever!!) round of chemo. It is going to be pretty intense all week. Today she is getting 3 doses of chemo. Each dose lasts 2 hours. This is much stronger chemo that she has gotten in the past. Within about an hour of receiving the first dose she was already feeling sick. Usually it takes a few days for the chemo to really get into your system and to see side effects. She will receive chemo through Thursday then have a rest day on Friday and then on Saturday MICHALLA WILL GET HER BONE MARROW TRANSPLANT. A DONOR HAS BEEN FOUND! Actually the donor that was going to donate last week has been cleared and is now donating this Friday so Michalla will receive his marrow the following day.
Her new birthday, as they call it around here, will be May 3rd. This is the day she is given a new life. This is literally true. The bone marrow doctor came in today with the results of her surgery on Friday and said that she does not have any bone marrow at all in her body right now. It has been a miracle she hasn't gotten sick this last month. Once in a while the body, after so much chemo, just can't recover. She has received 6 rounds of chemo total and every time up until now the body was eventually able to make new bone marrow after it got wiped out. Well I guess this time, the body said "enough is enough". We are very fortunate that the donor is available. At this point there was no other option. Her body was not ever going to make new bone marrow. That explains why her counts were never coming up. They were never going to come up. Thank goodness for the selfless act of this 27 year old man that has never met Michalla. Because of him, she has a chance to live.
To complicate things, Michalla had to have another unplanned surgery on her cyst on Friday. A big thank you to Dr. Skarda who was willing to look at Michalla without an appointment and perform surgery within a few hours of seeing her knowing that it had to happen to before she started her transplant chemo today. I definitely saw the Lord's hand in how everything happened on Friday and was once again reminded that the Lord is very aware and is in charge. If the transplant had happened last week as planned then this problem wouldn't have been discovered and it would have been very dangerous if not life threating to Michalla. Thank goodness the Lord is in charge with his all knowing vision and not us.
Thank you to everyone that has prayed and continues to pray for Michalla and our family. Prayers are answered. I have a strong testimony that the Lord has heard every prayer said on her behalf.
Her new birthday, as they call it around here, will be May 3rd. This is the day she is given a new life. This is literally true. The bone marrow doctor came in today with the results of her surgery on Friday and said that she does not have any bone marrow at all in her body right now. It has been a miracle she hasn't gotten sick this last month. Once in a while the body, after so much chemo, just can't recover. She has received 6 rounds of chemo total and every time up until now the body was eventually able to make new bone marrow after it got wiped out. Well I guess this time, the body said "enough is enough". We are very fortunate that the donor is available. At this point there was no other option. Her body was not ever going to make new bone marrow. That explains why her counts were never coming up. They were never going to come up. Thank goodness for the selfless act of this 27 year old man that has never met Michalla. Because of him, she has a chance to live.
To complicate things, Michalla had to have another unplanned surgery on her cyst on Friday. A big thank you to Dr. Skarda who was willing to look at Michalla without an appointment and perform surgery within a few hours of seeing her knowing that it had to happen to before she started her transplant chemo today. I definitely saw the Lord's hand in how everything happened on Friday and was once again reminded that the Lord is very aware and is in charge. If the transplant had happened last week as planned then this problem wouldn't have been discovered and it would have been very dangerous if not life threating to Michalla. Thank goodness the Lord is in charge with his all knowing vision and not us.
Thank you to everyone that has prayed and continues to pray for Michalla and our family. Prayers are answered. I have a strong testimony that the Lord has heard every prayer said on her behalf.
Sunday, April 27, 2014
Logan's Eagle Project
Thank you so much to everyone that came out and supported this project. We are very happy with the turn-out. We definitely have the best family and friends. It was also such a surprise to have a photographer and reporter from the Daily Herald come and do a story on the Michalla and the event.
The story can be found in today's paper. It was a wonderful day that makes a mom very proud of her children. :)
The story can be found in today's paper. It was a wonderful day that makes a mom very proud of her children. :)
Michalla, Mom, Logan and Trina (Be the Match Rep)
Grandma B's sister, Penny and Daugher
Step-dad Danny with two of his sisters (Stephanie and Michelle)
Logan explaining the paperwork to Aunt Lisa and Uncle Mark
Michalla being interviewed by the reporter
Cousin McCoy organizing the water
Uncle Rob, Sister Megan and Brother in Law Justin swab their cheeks.
Dad, Rich, and Step Mom, Kim listen to instructions
Logan recruited the Daily Herald Photographer to join the Bone Marrow Registry.
Sunday, April 20, 2014
Another reminder that : THE LORD IS IN CHARGE!
As some of you know Michalla has been having a really hard time mentally being in that hospital room for 6 weeks straight. Since she had been fever and infection free for a couple weeks the dr. decided the reward of letting her come home for 3 days outweighed the risk of getting sick while at home. (Her counts are still at zero--meaning her body has zero ability to fight any infection or illness). So after 2 bags of blood and a bag of platelets and a bone marrow aspirate and spinal tap--Michalla was able to come home at about 8 PM on Monday night with the plan on coming back to clinic on Thursday and admittance on Friday 5 AM to start the chemo to prep for the transplant scheduled on the 24th.
(P.S. Thanks to all those that helped clean and sanitize the house on Monday to help make it a little safer for Michalla to come home)
On Wednesday we got a call from Dr. Pulsiver (the bone marrow doc) and he told us that the donor that was lined up to donate was no longer cleared to donate. The donor is found through a national registry and they wouldn't give any more info than that. No longer cleared to donate could mean anything from the donor changed his mind to he came down with something medically wrong last minute. What it means to us is that Michalla no longer has a donor!
There were a lot of tears shed on Wednesday afternoon. What was so hard for Michalla is that she finally wrapped her head around the fact this was happening in 2 days. You actually get kind of excited, if you will, to just finally get it over with. All this chemo has been building up to this moment--the transplant-- and it is finally here. Then in one phone call that all gets taken away and you go back to the unknown. The dreaded fear of the unknown.
And it is defiantly unknown. The doctors don't even know what to do. They joked about admitting her again, because this would be the safest, but we made it clear Michalla was not wanting to go back in. They say they have never had someone lose clearance this close to transplant. So for now, Michalla goes into Primary Children's every Monday and Thursday for a check-up and transfusions; we keep a close eye on her and watch closely for any signs of sickness or fever; and put our faith in the Lord that this is all going to work out.
The silver lining to all this:
If we didn't have that donor lined up and only avail on that certain date to donate then Michalla would not have been allowed to go home. In fact, a week after coming home her counts are still at zero. She would still be sitting in the hospital waiting for her white blood cells to come up for another 2 weeks. Even though it is risky--she is loving being home!
The doctors weren't loving the fact that she was going to go into transplant before her counts were recovered but they were doing it because that is the only time the original donor could donate. Michalla will certainly have time for counts to recover now.
The biggest risk to now having to wait until a new donor is found is the cancer coming back. The blessing in this is that cancer can't come back until white blood cells come back. So that fact that Michalla still has zero counts (while it may be bad for risk of getting sick) is a huge blessing in the fact that she will be able to remain cancer free while we wait.
Waiting a little longer to do the transplant, giving Michalla's body a chance to recover a bit from the last chemo, will help the transplant have a lower risk of infection.
There are 3 other potential matches (on paper) that would work for Michalla. That is amazing. Many people are lucky if they have 1 match. Michalla had 4 originally.
All those silver linings aside, the doctors still wouldn't have chosen this for Michalla. There is a lot of risk involved and many things that can happen while a new donor is found. We are praying every day that one of the potential matches will be willing and able to, not only donate, but donate in the next 2 weeks. That means they would start their prep now. (Physicals, blood work, shots etc.) Again, it is the fear of the unknown. Michalla's life is literally in the hands of 3 people we have never met or that don't know Michalla. They have to be willing to drop everything from their busy lives and do this self-less act for someone they know nothing about.
This is another test of Faith that we must face. It is also another reminder that we are never in charge of our life. The Lord is constantly reminding me, personally, that he is in charge and that I just need to trust him.
Please pray this week that Michalla will remain healthy so she doesn't have to be admitted to the hospital and also please pray that one of these donor matches will be willing to do this selfless, Christ-like act and save Michalla's life.
(P.S. Thanks to all those that helped clean and sanitize the house on Monday to help make it a little safer for Michalla to come home)
On Wednesday we got a call from Dr. Pulsiver (the bone marrow doc) and he told us that the donor that was lined up to donate was no longer cleared to donate. The donor is found through a national registry and they wouldn't give any more info than that. No longer cleared to donate could mean anything from the donor changed his mind to he came down with something medically wrong last minute. What it means to us is that Michalla no longer has a donor!
There were a lot of tears shed on Wednesday afternoon. What was so hard for Michalla is that she finally wrapped her head around the fact this was happening in 2 days. You actually get kind of excited, if you will, to just finally get it over with. All this chemo has been building up to this moment--the transplant-- and it is finally here. Then in one phone call that all gets taken away and you go back to the unknown. The dreaded fear of the unknown.
And it is defiantly unknown. The doctors don't even know what to do. They joked about admitting her again, because this would be the safest, but we made it clear Michalla was not wanting to go back in. They say they have never had someone lose clearance this close to transplant. So for now, Michalla goes into Primary Children's every Monday and Thursday for a check-up and transfusions; we keep a close eye on her and watch closely for any signs of sickness or fever; and put our faith in the Lord that this is all going to work out.
The silver lining to all this:
If we didn't have that donor lined up and only avail on that certain date to donate then Michalla would not have been allowed to go home. In fact, a week after coming home her counts are still at zero. She would still be sitting in the hospital waiting for her white blood cells to come up for another 2 weeks. Even though it is risky--she is loving being home!
The doctors weren't loving the fact that she was going to go into transplant before her counts were recovered but they were doing it because that is the only time the original donor could donate. Michalla will certainly have time for counts to recover now.
The biggest risk to now having to wait until a new donor is found is the cancer coming back. The blessing in this is that cancer can't come back until white blood cells come back. So that fact that Michalla still has zero counts (while it may be bad for risk of getting sick) is a huge blessing in the fact that she will be able to remain cancer free while we wait.
Waiting a little longer to do the transplant, giving Michalla's body a chance to recover a bit from the last chemo, will help the transplant have a lower risk of infection.
There are 3 other potential matches (on paper) that would work for Michalla. That is amazing. Many people are lucky if they have 1 match. Michalla had 4 originally.
All those silver linings aside, the doctors still wouldn't have chosen this for Michalla. There is a lot of risk involved and many things that can happen while a new donor is found. We are praying every day that one of the potential matches will be willing and able to, not only donate, but donate in the next 2 weeks. That means they would start their prep now. (Physicals, blood work, shots etc.) Again, it is the fear of the unknown. Michalla's life is literally in the hands of 3 people we have never met or that don't know Michalla. They have to be willing to drop everything from their busy lives and do this self-less act for someone they know nothing about.
This is another test of Faith that we must face. It is also another reminder that we are never in charge of our life. The Lord is constantly reminding me, personally, that he is in charge and that I just need to trust him.
Please pray this week that Michalla will remain healthy so she doesn't have to be admitted to the hospital and also please pray that one of these donor matches will be willing to do this selfless, Christ-like act and save Michalla's life.
Sunday, April 13, 2014
Wednesday, April 9, 2014
Still No Counts and a damaged heart :(
For Prep for the bone marrow transplant coming up they are testing all of Michalla's organs to get a baseline to see how they are doing over the next year and how the transplant affected them. Well, the heart docs came in today and said that the chemo has already damaged Michalla's heart (Again). According to Michalla, "Now instead of being on 2 million drugs I will be on 2 million and 2 drugs" We haven't seen the transplant docs yet to see how this will affect the transplant.
In other bad news for the day....still no counts. They really need to start moving if Michalla is going to be able to come home for a couple days before the transplant. Also if they don't come up soon then the transplant will be delayed for more than a month because of conflicts with the donor's schedule. So please continue the prayers that we will see some movement in the next couple of days.
--Teri
In other bad news for the day....still no counts. They really need to start moving if Michalla is going to be able to come home for a couple days before the transplant. Also if they don't come up soon then the transplant will be delayed for more than a month because of conflicts with the donor's schedule. So please continue the prayers that we will see some movement in the next couple of days.
--Teri
Monday, April 7, 2014
Scavenger Hunt
I finally got cleared to leave my room! To make my first time out (in 3 weeks) more interesting than just roaming the halls my dad made up a scavenger hunt for me to figure out through the halls. Sorry for some of the blurry pics!
Dad wanted to take a selfie on my phone... well it's going on the blog then! hehe
Saturday, April 5, 2014
UPDATE
I don't even know where to begin. I feel I always want to post the happier things that go on in this place like when I receive packages or give or receive notes or presents from my little friends that I've made. And I hear about and have people all the time tell me how inspiring my blog is for them and their family and they don't know how I stay so positive and graceful through this whole trial. Well I have news for you all. IT IS REALLY HARD SOMETIMES. I very well put on a face a lot to be happy and brave (not that I am not happy and brave most the time) but sometimes it gets hard and there are moments where I don't want to be happy and brave all the time for everyone. I break down. I cry. I have anxiety attacks. Do I ever take a picture of me crying and put it on the blog? Heck no. So everyone has only been seeing the sugary coating that has been happening in the hospital. And don't get me wrong. There are some good times and moments. And they happen all the time! And I am going to share an experience that happened but I need some extra added prayers these next few weeks and I'm going to let everyone who reads this blog know why (and anyone they would please ask to pray for me as well).
The bone marrow team. They like to keep you in the dark and occasionally come in and drop a few bombs on you then go into hiding again. This last visit my mom and I had with the bone marrow lady started out with really good news! I have a donor! The only information I am allowed to know about my donor for a year is that it is a male and he is in his early 20's. I don't get to find out where they are from, what they look like or even their name until a year is up. And then it's only if the donor wants me to know who he is. I really hope so for I hope sometime in my life I can go and meet and thank my donor personally for saving my life. Such a selfless act of service he is doing for me.
Along with this good news came the news that my donor is donating his marrow to me on the 23rd of this month and that I will be receiving my transplant on the 24th. That is three weeks ago yesterday when I heard this news. You think I would be jumping for joy that this is all happening but honestly I am scared out of my mind. I thought I had at least another 5-6 weeks before my bone marrow would be ready and now I find out I have 3 weeks to mentally and physically prepare for this. This means my counts need to come up fast for this to work. My only other option is my counts don't come up in time and we push the bone marrow back to May. That would potentially leave a month for me to relapse though which is not good. So PLEASE START PRAYING FOR MY COUNTS TO COME UP!! They need to by next Friday. I know this is all Heavenly Fathers will and plan but I know the power of prayer is real and I am needing all the prayers I can get.
As I said earlier I have been having some anxiety and panic attacks. I feel people don't realize how much this is a mental challenge as well as a physical challenge. You can only be stuck in one room (not allowed to leave) for so long before you start to go a little crazy. Or in my case, start having anxiety. I am not thrilled with the idea of having my bone marrow in three weeks for a few reasons but one of them being that I was very much looking forward to the break from the four walls I am confined in. My break will be cut from 2 weeks to about 2-3 days. I am grateful for my donor do not get me wrong. But a little longer break would have been nice.
The other night I was starting to have an anxiety attack. My dad was here and he did help me calm down eventually but during it I kept thinking to myself "I need to text the Cornelius's to come give me a blessing. No it's too late to text them. I need to text them. No." It was a battle in my head for about an hour until I calmed down and just never ended up texting them. (Brother Cornelius is the branch president over the hospital). The next day my mom was coming up but she couldn't until about 6 pm that evening. As she walked through the door I could see brother and sister Cornelius following in behind her! I couldn't believe it. Heavenly Father totally listened to my thoughts and concerns. I asked them what they were doing here and brother Cornelius said that he got an impression this morning that they needed to come see me some time today. I started crying and told them about the thoughts I was having the previous night about texting them. How grateful I am that he is so in tuned to the spirit to be able to hear that prompting and act on it so he could not only give me a blessing but give me a reassurance of Heavenly Fathers awareness of me.
That's all for now. Please pray and have faith for me that my counts start moving! Thank you!
Tuesday, April 1, 2014
oh that lilly
April fools!
Lilly came to visit me today!! She was kind enough to make me some Brown E's..... April Fools! lucky for me she made me real brownies too!
She also made me this "Friends Forever" sign that I absolutely love!
My heart melted today when I read the last entry Lilly had recently written to me. I had told her before that Donald Duck was my favorite and she listened! She is definitely making my heart smile as well as many others! Lilly and Michalla BFF's!
The other day my mom and I face timed Lilly and she said that she gave a talk to her primary through face time! I thought it was so cool and brave! We then were lucky enough to have her tell us the talk. She is an amazing example of courage and bravery. I love you Lilligan!
Catching up on last weekend!
Danny brought us yummy Mexican and then we played charades on our phones. It was a fun night!
My new friend, Taleah, made this wand out of clay and gave it to me! Along with fruit snacks and a cute note. Please start praying for her too!
Together for Taleah!
Visitors
This is an amulet that Heather Morley gave me. Besides being super cute it is supposed to protect me and bring me good fortune. Thank you Heather!
The Taylor's came up to visit me and gave me this adorable puppy because of my loss of my puppy. They are so thoughtful! Did I mention he also smells super good? Along with other goodies like lotion and magazines. Thank you so much!
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