I need to say that the past months I feel like we have been
prepared for this. I've had very personal spiritual
experiences of the atonement and have been feeling the spirit in
a different way. Especially during sacrament
meeting. We have been doing so many fun little family outings
that I'm treasuring now. So many life choices (Jobs,
insurance etc.) Have been made that are helping us through all
of this.
This is going to be a long, hard road for all of us. The idea of an
average of six months here is so overwhelming. In
the scheme of things its really not that long. But it is. I know
with the love and support of family and friends we will
be okay.
The afternoon everything happened it was just a normal day. I had picked Jeter up from my mom's house and put Brett down for a nap. Jeter and I were playing uno in the family room while I waited for the doctor to call back. Kameron was at school. Dr. Keith called and he was making small talk so I thought oh it won't be bad maybe some kind of allergy issue. Maybe he was nervous. I would've been. He started telling me about Brett's low blood counts and high white counts. My brain felt like it was filling with water and I was drowning in the information. I kept relatively calm. I told him we would go to Phoenix Children's Hospital and he would find out if we could drive ourselves or if we would have to be taken by ambulance. Thankfully we would be able to drive ourselves.
Katie called me earlier in the day and said that the doctor was going to run some blood work on Brett and I am thinking they are just being cautious see if he is allergic to something. I went into my class and about half way through Katie called me and I knew it couldn't be good news because she knew I was in class. I stepped out of class and she told me that Brett most likely has some kind of cancer, Leukemia or Lymphoma. My mind just starts thinking no this cant be happening. My first thought is cancer my son is going to die. I leave class and have a very emotional drive home praying with all my heart. I get home and Katie's mom is there and I just have to step out of the room while she talks to her about it.
Next I called Kameron. Saying the words "Brett has leukemia" was one of the most emotionally painful thins I've ever done. Like a nightmare. He immediately came home and I called my mom to come get Jeter. Once again saying the words were physically painful. Kameron got home and we called his mom. She said "at least there is hope". And that was so true. At the time we thought we were going to lose our baby. The thought that there was treatment was something to hold onto. There was just so many questions it was hard to see past what was happening in that moment.
I could process the information inside and be ok but to tell someone else that your son has cancer was very hard. I couldn't hold it together to tell my mom, everyone was calling and i was just ignoring their calls because I didn't want to have to tell them.
We were told to pack for at least a week. Kameron took Brett on a quad ride and we then met up at my parents house to give Jeter his things and get blessings. I honestly felt like every time I blinked I might wake up. It was an out of body experience. And it was just the beginning. We just needed answers but I felt almost scared to leave our home. I didn't know what our life would be like when I would see it next. And trying to think clearly and make plans was difficult. We left Thatcher about
4:30 pm.
Brett loved riding the quad so I thought I would do one last fun thing with him. Probably wasn't the safest thing to do in my emotional state. I gave Brett and Katie a blessing before we left Thatcher, which was very hard, but felt the spirit guide me in the things I needed to say and saw many of the blessings come from the Lord over the next few months.
So when we got to the ER (8:30pm) they told us it would be a 2 hour wait. Before we left Thatcher they told us we should be immediately admitted. There was some confusion but our first miracle was getting a room within 10 minutes and then the orders came in that we needed a room quickly, because of Brett's condition he needed to be away from sick people. It was only the beginning of many miracles.
The first night was rough. getting an IV put into our sweet baby was awful. The first one was put in his right arm so he couldn't bend his arm. The second IV would be put on the top of his left arm. The crib is iron and for safety you have to raise the sides. So every time he would finally get him calmed down the iron clanking around would wake him. We were officially admitted on March 31, 2015 at 2:00am.
This part was really a world wind, you have no idea what is going on you have so many questions and I was just trying to stay positive and take things one at a time.
Things start to get a little blurry around now but we did find out it was Acute Myeloid Leukemia (AML) Brett's main doctor, Dr. Bocklin, said it look text book and seemed to look like inversion 16. There are two types of leukemia. AML and ALL. AML is more aggressive and has to be treated aggressively. A shorter time but the treatment is more intense. The results came back about two weeks later and it was inversion 16. Which meant a 4 round treatment plan and a 80% chance he will grow up to be a grandpa. The prayers and fast were for Best Case Scenario. To get those kinds of numbers with that kind of plan (4 rounds is the least amount) Another miracle.
We also had to chose to enter Brett into a case study which he did not get selected. Which we figured whatever was meant to be would happen. We had Broviack surgery. The broviack would be one of our biggest challenges.
We had so many people praying and fasting for us we saw miracle after miracle and I know this was answers to so many peoples prayers of faith. What a blessing it was to live in a small community and a great ward. We are such quiet people I could never have imagined how many people were wanting to help in any way they could.
Brett also had cancer in his spinal fluid. When the doctors came in to talk to us there was one who was not skilled in her bedside manner. They were explaining AML and were trying to prepare us for what our life would be like for the next 6 months. As she began explaining the spinal fluid and the lumbar punctures they would have to do to fix it I mentally lost it. This was one of my darker moments. Unfortunately it was in front of everyone.The way she described it I could Not imagine that was going on inside of my baby. My Brett. The little baby I had born and my sweet boy. He was only 19 months old.
The lumbar punctures were done under anesthesia and they want two clear ones in order to consider it cleared. But you can only have 6 at a time. And they are done 2-3 days apart. They administer Cytarabein (chemo drug) and he has to be fasting before the procedure. Brett would end up getting 6 lumbar punctures. (the first one they did they also did the bone marrow biopsy to get his true diagnosis)
Meanwhile Prayers are being given. Fasting from our ward and Brett's name being put into multiple temples. Online financial funds are created and the furniture sale is put on in Thatcher to raise money. People are sending gifts, cards, money and sending us the nicest messages on facebook and texting us words of love and support. The messages were such a good way to escape the hospital room and feel connected to our life back home. Even just having a mental break was good. We were so overwhelmed by how many people loved our family. We are pretty keep-to-ourselves so having so many people contact us and follow our story was just amazing.
We even had a good friend give Brett an ipad. The generosity of our friends, family and strangers was honestly overwhelming.
We didn't see Jeter for a week. When my mom and Emily brought him it's hard to explain the feelings. You fear for the health of all your children. So to see Jeter healthy was so contradictory of what Brett was going through it was hard to believe one of our kids was healthy and one was not. Jeter's excitement and his sweet little self was so refreshing. It's amazing how a mother's love can stretch in so many directions and be so full yet keep growing.
Our family picture. Kameron and I slept on an air mattress and somehow made the hospital room somewhat normal. We had to figure out where we would stay for the next months. Another amazing blessing we found an apartment behind the hospital (the Ronald McDonald housing didn't fit our situation). Kameron was driving back and forth to Thatcher to finish his school and for work until we figured out better arrangements for that. And Jeter needed us and until we had a place for us to stay. We ended up renting our home to Nate and his family which helped us balance a house payment and an apartment. We just continued to adjust to vitals every four hours. Blood draw at 4 am every morning. Cafteria food. It took me about every week to not cry every morning waking up to the nightmare we were living. But we did start to get answers about Brett's situation and our prayers were answered for Best Case Scenario.
Our first holiday in the hospital was Easter. Another hard adjustment was changing all our of plans and doing things very differently. Especially holidays. But we tried to keep things as normal as possible. Especially for Jeter. Our saving grace was Natalie. She took Jeter in, lots of sleep overs and including him in their family activites. With three little kids of her own we will forever be grateful for what she did for our family when we needed help.
Ronald McDonald house.
Our little fighter.
We loved seeing Uncle Jason we were lucky sometimes his work would bring him to Phoenix Children's so he could stop in and see us!
We also got to meet Paul Goldschmidt. A pro player on the Arizona Diamond backs.
My family used the furniture we had been working on along with some homemade bread and food and put on a fundraiser for us. Everyone helped and we were amazed at how many people came and donated. The help and support of the community was amazing.
The chemotherapy for the first round was a 10 day cycle. (the longest of the four, we are glad we didn't know any better) it includes eye drops every four hours. morning and night. mouth wash to prevent mouth sores. and of hair loss. I will admit I didn't handle the visual change very well. In fact when we asked Jeter if he wanted to buzz his head like Brett's he was too afraid because he didn't want me to get upset. sweet boy. I explained myself and he eventually did cut his hair too. Kameron did make the right choice cutting it when he did. It was just a hard thing to see.But did not take away from his cuteness!
I loved Brett's bald head, Katie wasn't to happy to see it shaved but I knew it would be better than seeing it slowly fall out. If you notice Brett is smiling in a lot of pictures. I think what a blessing it was to have a cheery little boy as long as you are not trying to take his vitals.
And during it all I had to remember the little girl I was carrying. Another wonderful blessing was the stress did not affect her at all. I did have contractions brought on by the stress but nothing that interfered with the pregnancy. Kameron the nurses and the doctors all made sure I kept eating and drinking, we didn't need any premature babies. Thankfully the pregnancy would go well.
So all those wonderful lumbar punctures...we learned Brett was allergic to Benadryl, Ativan and Verced (the two medications that help calm anxiety and stress) he would freak.out. like i couldn't get him to look at me hurting himself freak out. The picture in the orange shirt was when they made the poor boy fast until the afternoon and was a mess. Coming out of anesthesia was worse so after that we just delt with a mad Brett instead of a Very Very upset Brett. And Dr. Watinabi, after seeing me struggle with very upset Brett made sure all procedures involving fasting were done in the early morning. Also as Brett's numbers dropped he would receive blood and platelets transfusion. And in order to surgery his platelets had to be at a certain number. That meant a lot of transfusions, a lot of vitals and figuring out Brett couldn't have benadryl. The doctor told us 10%, mainly boys, have a sensitivity to this.
Despite it all this boy kept smiling. He amazed us with his strength (especially during dressing changes) he would bounce back so quickly from things. Brett was so active he was able to break his broviack line not once but twice. They were able to repair it but you can only break a line twice. He had a double line so total he broke his read line twice during the first round and the third would happen later...
We did have a pretty cool view of the city and the ball field.
The hospital provided toys and we would get gift baskets from foundations and from friends. Because Brett was sick when he was admitted we unable to leave his room. The whole 32 days. And everyone (nurses) that came in had to wear a mask and the nurses would put on a gown as well. I'm sure that didn't help the fear in the beginning for the poor little boy. We also had to re-get to know a lot of nurses because we couldn't see half their faces and we were a little emotionally distraught at first.
They kept us well stocked up on candy for a while, which Brett wasn't complaining about. I don't know how Brett handled being in a small hospital room for so long and the only time they let him leave was to do a dressing change or some other kind of procedure.
One day I kept both boys. It went surprisingly well and we had Nurse Dan that day. He is an awesome nurse. He loved Brett and would always tell people what a fighter he was. He gave us lots of snacks and made sure we had extra of whatever we needed.
This was our longest round. We figured because Brett kept getting the chemo from the lumbar punctures even after the 10 days of the initial treatment was over. It's about a 21 day recovery from the cytarabein. A lot of sitting around, you tube, and keeping Brett as healthy as possible. Infection at that point was a biggest threat. Another miracle was that Brett did Not get a fever that first round. being at 0 (no immune system) for such a long time is honestly a miracle. The nurses later were so amazed he made it through that round with no fever.
Grandma Tina came and stayed with the boys so we could go to the temple and just get a break.
Our impression in the temple was that the Lord has such a greater plan for us. Being in the celestial room was so peaceful and cleansing. It gave a peace of mind and knowledge that our Savior was and is aware of Brett and each one of us. Individually caring for our needs.
One side affect was the rash he would get from the chemo. it was each time and only happened the 1st, 2nd and 3rd round. It never caused any problems thank goodness.
Numbers started going up! We could tell by the way Brett started to be more active. That was a good thing but made following him around on his pole more dificult. But much better than seeing him feel so awful. I think we were used to Brett not feeling well and once we saw how he could be it made us realize how bad he must have been feeling before we got diagnosed.
Super hero day at the Hospital! Our batman loving Jeter was in heaven!
I will always cherish seeing the love and worry Jeter had for Brett while he was in the hospital. Whenever he was in Thatcher and I would go get him he would always say he wanted to hurry and go see Brett. This was very tough for him also getting dropped off everywhere staying with grandma or Natalie and Brett getting so much attention. It was tough but a blessing that he has the right temperament to handle the situation.
We were Finally discharged May 5th! I can't believe we made it through that. Brett was almost leery of leaving his room. One of the hardest things was not being able to explain what was going on to him. It made my heart hurt knowing he was so happy to leave but I knew he would have to go back and do that again. And again. But we tried to keep it as fun as possible. He was discharged for 10 days. About day 5 he would get a bone marrow biopsy and lumbar puncture (with chemo) to treat the fluid and see how his body was responding (if his body was rebuilding his white blood cells properly) His results would come back clear! No leukemia. This was another Amazing blessing. His body was responding they have to treat the cancer from different angles and intensities this is why we had to do more rounds. Another miracle for our sweet Brett.
I think I started feeling very positive after these results and thinking he is going to be OK. This is just a trial we need to get through. My outlook was he is sick he will get treatment and then he will be better.
And it rained so Brett got to jump in puddles one of his most favorite things! Brett was not aloud to leave Phoenix the entire time so we got to find some new things to do in the City.
Like picnics in the park
Baby girl kept growing! I was physically blessed to be able to endure the physical demands this called for. She was a very bouncy baby which I am glad for it gave me a peace of mind.
Poor Katie I don't how she balanced being pregnant and dealing with Brett. Blessings, blessings, blessings!!!
These boys love each other there is no doubt.
We had come such a long way in such a short time. The dust was somewhat settling but we had a long road ahead of us.
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