Day 11 of In vitro Fertilization (IVF) down, __ days to go. My husband and I are finally doing this and it is crazy, scary, and exciting. True, I just started, but my story with having a family actually goes way back.
My little brother, Nathaniel Kent Thomas, was diagnosed with a rare (at the time) disease called, Adrenoleukodystrophy (ALD) when I was 8. He was 7. This disease is missing a gene on the X chromosome that breaks down Very long chain fatty acids (VLCFA’s). Because of this missing gene, the blood stream builds up with these VLCFA’s and eventually they break through the brain barrier and destroy the myelin sheath (this is responsible for protecting and managing the functions of communication from the brain to the body and back). When this is damaged/destroyed, the communications are destroyed, and the crucial functions of the body, stop functioning. My little bro went from a healthy, happy, very smart, athletic, coordinated, and popular little boy to a bed-ridden vegetable in about 18 months.
It all started with extreme hyper-activity and difficulty concentrating in school, then bladder and bowel issues followed. This was so hard to watch; your little brother being made fun of, pushed around, laughed at, etc….and there was nothing he could do, bless his heart. To make things a little better…I did enjoy kicking a few of the mean boys’ where it counts…hard. That felt good and Nathaniel appreciated it too. 🙂 Nathaniel had lots of fighters for him during this time. My older sister, Ashlee, being one, my mom and dad being two others….lots of power in the family I grew up in. I sometimes wonder how I got so lucky.
Next, went Nathaniel’s ability to walk and talk. We’d communicate with him by having him point to things or we’d draw out what he wanted and he’d point yes or no. Although it must’ve been so frustrating for him to not have these skills anymore, he’d still play around with us.
“Nathaniel, pick this hand if you want PB & J sandwiches or this hand if you want egg salad.” Nathaniel would pick egg salad. Ashlee would make this sandwich for him. All the while, Nathaniel was sitting on the chair laughing.
“Here’s your sandwich Nathaniel.” Nathaniel would laugh and shake his head and try to say, “no, no, no, hahaha.” He actually wanted the other sandwich, but he sure did enjoy watching us make the wrong one. 🙂
Next, went his ability to see and hear….this was hard for me…I can only imagine how hard it was for him.
Nathanial and I were best friends, only 18 months apart. We did EVERYTHING together from playing in the mud and eating grasshoppers to playing legos, video games, cops and robbers, barbies, “House”, and of course, night games and late night movies (in the summer of course).
When Nathaniel could no longer see the movies we’d come accustom to watching since he could no longer walk, I started reading to him. This was a time of my life I’ll never forget. He couldn’t respond, he couldn’t do anything, but he was so grateful for the company and to hear happy stories.
When we first noticed his hearing was going, I was so sad. “What will Nathaniel and I do together Dad?” I had so many spiritual experiences in my childhood and continue to have them, it is so incredible. Miracles.
One day, I prayed and prayed and prayed that Nathaniel could please see and hear the book I was reading him. I just wanted him to enjoy it for the day. It wasn’t fair.
Next thing I knew, Nathaniel was looking straight at me with a huge smile on his face. He could see! Hurry, read to him, show him the pictures!
That was a great day…Miracle.
The last thing that goes when the body is dying is the ability to swallow. People will usually enter into a coma state and the passing is usually quite peaceful. My parents were given 2 options:
Let him slowly starve to death; about 7 days
Put in a feeding tube and prolong his life for who knows how long, in the state he was in. You see, Nathaniel’s disease at this point was similar to an auto-immune disease; all the systems were functioning properly to keep him alive, but the immune system was extremely fragile. A cold could take his life.
My parents were faced with a tough decision. You see, on top of my brother being sick for the past couple years, my mom was in remission from brain cancer; she was diagnosed one year before Nathaniel’s disease came about, my dad had sold his business and started a new one from scratch so he could work from home, and they had 4 daughters to take care of as well…..wow. I can not imagine.
My parents put in the feeding tube. I don’t think my mother could bare the thought of burying her youngest child.
The next 9 years became the new norm for me. My mom refused to have a nurse take care of her son, so she cared for him during the day and my dad would work in the basement office all day, then come up at night and take care of him the rest of the day. At the same time, my mom was on and off of chemo and radiation treatments as the cancer kept coming back, she was in physical therapy and rehab for the neuropathy she was dealing with due to the cancer, AND they had 4 other children to care for. Again, I can only imagine how that would be as a parent…it was hell enough sometimes as a child/sibling. I look back at these times at my incredibly strong parents and think.. “if only I could do so well…”
Nathaniel was almost taken from us several times as his feeding tube would be knocked out from his constant seizures and muscle spasms. Due to his low immune system, the surgery to put back in the feeding tube would kill him. Luckily, my dad, my sister, and the doctors once, were always able to get it back in. Miracle.
My mom was also up and down with her cancer during this time. She went through radiation and chemotherapy 4x and underwent brain surgery to remove the original tumor when I was 17 years old….she came out of this talking as if nothing had happened..Miracle.
I was 19 when my mom had a bad seizure (one of many), hit her head, and was rushed to the ER. The doctors found more tumors…there was nothing they could do. 7 weeks later, she passed away, peacefully in our home while on hospice care.
I’ll never forget that night. The way she looked, the pain, confusion, anger, and loneliness I felt that she was gone and the tears I saw slowly streaming down Nathaniel’s face…doctors said he had a mentality of a 2 year old and remember, he couldn’t hear or see….somehow, he knew exactly what was going on and missed his mother. Miracle.
That is how my whole life was living with my brother and mom. There were so many miracles and unexplained experiences, but they were all lessons learned or tender moments for me, my family, and many many MANY others that knew them.
Nathaniel passed away peacefully in our home 9 months later. March 5, 2006. I was by his side, holding his hand, and he told me goodbye. That is an experience, that in full, I don’t share with anyone….Miracle.
There is no cure for ALD. They have come leaps and bounds since Nathaniel was diagnosed, but still no cure…
I was diagnosed as a carrier of ALD when I was 18 years old. I was also told at age 19 that due to my menstrual issues, I would most likely never have children. This news was devastating.
I was that little girl who, although quite the tomboy, played “House” daily with 10 children of my own. I feed them, bathed them, changed their diapers, and sang them to sleep. I couldn’t wait to a mom! I wanted to be a doctor and scientist too, but also a mom!
Fast forward to 2008. I had just returned home from serving my LDS mission in Everett, Washington, was back in school at UVU, and met, my soulmate and future husband.
The first time I met Mikeal I looked up at him, said hi, walked away, and a voice said, “You’re going to marry him.”….Miracle. 🙂
September 25, 2010, we were married!
2 months prior, I was worried sick about what I was going to do to make sure I didn’t accidentally get pregnant and pass on this awful disease that now having of the knowledge of, I felt I needed to stop from coming to any more little boys, girls, and their families.
Birth control- they made me beyond crazy
IUDs- The Merana was full of hormones, same affect as birth control, hey how about the Copper IUD…turned out, I was allergic to copper. What was I going to do? Condoms? This was not the best solution in the world, but my only one.
I’ll never that night. I was driving home to our future apartment I had just moved into in Provo, Utah. I was crying. I was confused. I was frustrated. I felt I was doing my best to prevent this disease from coming here and nothing was working in my favor. And then, a voice came to me and said, “you’ve done all you can, it is all going to be ok.”
For the next 3 years, that was enough peace for me to do what I could, but put the rest in the hands of God. I never ‘accidentally’ got pregnant. Miracle.
I was married at the young age of 24. After serving my LDS mission, I had planned on finishing my Bachelors, Masters’ Degree, and starting a career before I married. 28 sounded like a good age. I’m 28 now. 🙂
Mikeal and I were both in school our first year married and together decided that since I was most likely never going to have children naturally (I had halfheartedly convinced myself of this at 18 when diagnosed), 28-30 years of age sounded like a great time to start adopting. This felt good to both of us.
It was December of 2011. I was driving home from work and out of nowhere, a voice told me, “You need to start preparing for children.” What?? I’m only 25, it’s not time yet.
This thought wouldn’t leave me. I thought about it for weeks. I brought it up to Mikeal when I got home that night, but really didn’t believe it myself. Mikeal was NOT ready for kids; that was loud and clear. I didn’t think I was either. During these couple weeks that the thought wouldn’t leave me, I slowly started to want children. My desires for going back to school and pursuing a career started to change back (from when I was a child) to wanting to be a mom. WHAT?
Looking back, it is such a pattern in my life that when the Lord is directing and guiding you, He will make the decisions that are BEST for us, actually quite easy to follow. Miracles.
Now I was really getting excited. I was ready for kids. Mikeal was not. That was ok with me. I didn’t want him to go into it not ready, but I knew I needed to start preparing. Could I really have kids naturally? Is this what the feeling was telling me? Well, I knew one thing, I wanted to have the opportunity of being pregnant and bearing children, so yes, let’s give it a go.
I didn’t know where to start. Who does IVF in Utah? Who is the best? Where is it that Mikeal and I need to go to? For the next several months, I thought a lot about this and asked around, but didn’t make any progress.
My older sister, also a carrier of the disease and living back east, was starting IVF with her husband. Her experience was her own, it was hard, it was emotional, it was more than I understand right now and may ever understand. I am happy to say, she is pregnant and due in August of this year. She will tell you, Miracle.
One afternoon, I said a prayer and decided to google IVF doctors and asked the Lord to guide my search. I came across a name that felt right to me. I called it. It was The University of Utah Reproductive Medicine. Great. I set up a consultation. “We have several incredible doctors, they told me. Dr. Peterson is our head and one of the best in the nation. You most likely wont get him, he is always booked up.” We went to our consultation, Dr. Peterson was going to be our doctor. He had more experience and more knowledge in this field that probably anyone else we’d meet in Utah. Miracle.
This started in December of 2012. One year after I was told to get prepared. Mikeal still wasn’t ready for kids, but was good with the idea of going through the egg retrieval process and freezing our healthy embryos while they are still young, then implanting later on. This was great with me too.
IVF, as some of you know, is expensive! My incredible father had already offered to pay for both my sister and my treatment. Miracle. (What a beautiful miracle and gift money can be when used for good…someday, I will pay it forward). At the time, I was almost 27 and really wanted to figure out an alternative solution on my own, with Mikeal.
We applied for the Miracle Fund which with our income, we qualified for. This fund would pay for an entire IVF cycle. The application process consisted of 5 letters of recommendation each from non-family members, an adoption background check, application process, 4 hour interview, and $500 check.
During the middle of this 6 month ordeal, Mikeal got a PT job as a phlebotomist at The Andrology Clinic at the U. This was great because it paid for his tuition and books. We were really trying to stay out of debt. Around the same time, I got a raise at work. We no longer qualified for the Fund. We were denied.
October 2013- it turns out Mikeal’s job worked hand in hand with the IVF clinic. Mikeal was working with my nurses and doctor! They loved Mikeal. His boss called him into his office and told him that becuase he worked there, we were going to be given a large discount for IVF. Total estimated cost of IVF with the genetic component is about $15,000. Our total cost was going to be about $6,000. Miracle. 🙂
We started the process. Bloodwork, ultrasounds…problem. Turns out, I had what is called a septate uterus. I couldn’t get pregnant…. I was devastated for about a day. My doctor called me up, let’s do surgery. You’ll have an 80% chance of pregnancy once you heal. I was beyond grateful.
Remember back in July of 2010 when I was trying to figure out the best way to prevent pregnancy and the voice told me it would all be ok? 3 years and 3 months later, I understood why. My body couldn’t get pregnant without surgery. I was beyond protected. First thing Mikeal said, “well, that was a waste of condoms.” Lol.
But really, yet another, miracle.
March 17, 2014- Uterine surgery. It went great! I had the largest septum Dr. Peterson had ever seen. He also removed a bunch of endometriosis. This would help with painful periods and increase my chances of getting pregnant. Miracle. 🙂
I was on hormones for 1 and 1/2 months to build back up the uterus. There were some breakdowns and fights during this time. Again, hormones make me crazy.
May 5, 2014- small procedure to remove a bit more of the septum to make the uterine cavity a perfect fit for a baby.
May 10, 2014- The IVF medicine process had begun with normal birth control. Again, some breakdowns and fights….we’ve gotten used to this, we best get even more used to it… 🙂
May 31, 2014- Breakdown. A BAD breakdown. 4 hours of screaming, yelling, crying, etc. etc. etc. Poor Mikeal. this isn’t easy on him either. My mood was all over the place. I wasn’t thinking rationally AT ALL… I couldn’t help it.
I remember him coming in and massaging my back and head and shoulders for about an hour and a half. I dozed in and out of sleep. I was mentally, spiritually, and physically exhausted. I was terrified. What if it didn’t work? What if the shots were too painful and I couldn’t handle them? What if I went through all of this and no baby? What if Mikeal and I had a terrible marriage these next 5 months because of the hormones? What if there wasn’t a baby? What if I am fighting what God intended? Maybe I am supposed to adopt only. Maybe my body came the way it did for a reason. Maybe I am just trying to go against what should be. The thoughts went on and on and on in my head.
Mikeal: “Kaylee, I am so sorry you have to go through this for us. I am so grateful you are willing to. I think it’s going to work out.”
Mikeal: “Kaylee, tell me what you want to do and we’ll do that.”
Me: Silence……….I don’t know.
We both sat there in total silence. I didn’t know what he was thinking about, but I was going through these thoughts and just begging the Lord to give me something. I need something. Forever seemed to pass by.
I had one of the greatest experiences to date. I am still in awe at what I was able to experience. At what my Heavenly Father was willing to give me. After tears of joy were streaming down my face, I told Mikeal what I had experienced.
He started to cry. I cried. Turns out, he had been praying for me to get an answer, to get what I needed while I was being given just that. MIRACLE.
I had received an answer I had been searching for since I was 18. 10 years later, I got it and it was all worth it.
God is so good. God is so aware. God is so good.
June 1, 2014- I started the Lupron injections. 10 cc once a day, right into my belly. They aren’t bad. 2 moody days, but overall, I’m doing well so far.
I don’t know why life is the way it is. Why sometimes we have to go through such unbearable (or so it seems) situations, but I do know that God is real. That He is aware, and there to help us get through, but it really requires us to crawl through the mud with bricks on our backs at times. I am only starting these meds. I am going to have some tough times, but I have been given strength. I won’t hold back on days that just plain out suck, but I will always remember that God is there. God is real. God is good. I can do ANYTHING with God.
My dad taught me a lesson a long time ago. It’s called the 100 year rule. With anything we’re facing in life we can ask ourselves, “Will it really matter 100 years from now?” I can guarantee you your answer will always be no.
Trust me, I know that is WAY easier said than done, but I also know this. 10 years ago and on and off throughout these past 10 years, I have asked for the answer I received on May 31. It hasn’t been a walk in the park, but it’s also been doable.
When I received that answer, those 10 years seemed like a total walk in the park. They were worth every second in order for me to know what I know now.
This is my journey. I am an open book. This is where I am at now. I am grateful, I am humbled, I am strong. It’s good to write down the good times so you have things to look back on when the days are tough.
Thank you for reading, God bless, and keep pushing on…we’ve all got this, whatever our struggles may be.