From my perspective

I was like most little girls. I dreamt of one day marrying my prince who adored me, a doctor of course.  We would have 4 perfect children. Two boys and Two girls. We would live in a beautiful house that was roomy, but modest. I would earn a masters degree just in case I wanted to work when the kids were grown. But mostly I wanted to be a stay at home mom. I wanted my family to know just how much I loved them by always being there for them. We would have nightly scripture study, family home evening, and a year supply of food. Once the kids had all gone on missions or off to collage, then me and my prince would serve a mission. We would then visit every country we had ever wanted to see. Then, one night when we are in our 90's we would die in our bed holding hands. That was my plan. Not too much to ask for, right? I didn't ask to be rich, or famous. I worked really hard toward my goals. I married my prince who adores me. He is now a doctor :) We have two beautiful healthy little boys. Just as I was planning to have my two girls, something happened. Something that was never supposed to happen. It happened to other people, but not me. It wasn't in my plan and it wasn't acceptable. The doctor looked into my eye's and said "you have leukemia". My world was shattered. They wheeled me up to the dreaded 9th floor. The floor where people go up, but not a lot get out.  I kept thinking that I needed to go home and clean the house and make freezer meals, and pack a bag. There was so much to do. But they wouldn't let me. All day I had doctors coming into my room, poking and prodding me. Why couldn't they just leave me alone for a while so I could process what was happening to me? Then they would wheel me off for one test after another. Finally my doctor sat by my bed and told me that I had the most aggressive type of leukemia, and I had a 15-30% chance of survival. But what about my babies? They needed me. If I die now they won't even remember me.  What about my husband, we were supposed to die together! As a sat there trying to accept what I was being told, Marc brought the boys into say goodnight to me. My precious angels. I had never been away from them, and it felt like someone was taking half my heart and ripping it out. When it was time for them to go, my sweet Conner wrapped his arms around my neck and began to sob "mommy, come home with us! Let me stay with you mommy!" Marc had to pry him off my neck and I listened to him scream and sob as they walked down the hall and to the elevator. Every part of my being wanted to rip all the tubes out and jump out of the bed and chase after them. I wanted to pretend that this wasn't happening, maybe if I believed it enough, it would come true. There were days when I got lost in the "why me?" "what have I done to deserve this?" On one of those occasions I noticed a picture of christ on my wall. He had a tear rolling down his cheek.That tear was for me. He didn't want this anymore than I did. But to stop it would take from me and many others the opportunity to learn and grow. But he would help me. I knew that  for sure. There were many days where he carried me through.
The day after I was admitted my parents flew to Alabama on the first flight they could get. When I first told them over the phone they thought it was a joke. When I finally convinced them that it was true they were terrified. They said that once they got to my hospital room and saw me that there fear subsided and they knew everything would be ok.They and my in laws took turns staying at my house and taking care of my children. They were doing my job. That was supposed to be me. It was hard on Brayden too. He was very mean to grandma and would say "I don't like you, go home!" I think in his 3 year old mind that if grandma left, then mommy could come home. Marc spent every night in the hospital with me sleeping on a very uncomfortable chair. His patience and love was endless. They finally let me go home for 5 days for christmas. But when I walked into my house it wasn't mine anymore. Everything was different, especially me. Instead of the fun active mom that I was, I was suddenly the bald woman who was too sick and weak to do anything but sit on the couch all day. At first they were scarred of my bald head, but they grew used to it. I still haven't. I miss my beautiful hair. Without it I look like a strange alien that has my eyes. I avoid mirrors at all costs. After christmas it was back to the hospital for more chemo. This is how it went for the next 2 months. Finally we decided that we couldn't do things like they were anymore and we moved to Utah in my parents basement. That way my children would have stable people in their life that they loved. Plus all the help from family. My doctor recommended that we meet with the bone marrow transplant doctor to see if it was something we should do. What the doctor explained to us sounded to be a very scary, and long process. But without it I had about a 15% chance of survival, with it my odds went to 70%. That's a very big difference, I had to admit that.  I wanted to scream "no, I am done with chemo!" But instead I said a little prayer asking god what I should do. The though came to me "I will help you after you have done ALL that you can do". After the meeting I talked with my dad and Marc who had been there with me, and they received the same answer. We were doing this. They found me a perfect match donor much quicker than normal, and my insurance pulled through at the last minute. So on May 9th I was admitted to the BMT unit. For the first 7 day's I received very strong chemo that completely took out my bone marrow. There was no going back now. Then they put in the donor cells, and it was time to wait. Day 14, 17, 22, 26, still no signs of progress. A bone marrow biopsy showed that the donor cells were gone and my bone marrow was empty. How had that happened? The doctors had never seen that with a 10 our of 10 match. They were just as confused as I was. They had enough cells from the same donor to do a second transplant, but in the mean time they sent some of the cells out for testing. So I sat in my hospital room, day after day. Hearing all the fun things my kids were doing. And I was missing all of it. Once a week they got to visit me for 1 hour in the lobby if I wore a gown and mask. But the kids shied away from my appearance. They told me they loved me, but I could see in their faces that they were scarred to give their love to me, because they never knew when they would see me next, if ever. One day my sweet little Conner must have picked up something from a conversation because he came up to me and wrapped his little arms around my neck and whispered in my ear "mommy, your not going to give up, are you?" I promised him that I would never give up. That promise has gotten me though some very hard times when I wanted to give up. Like when I had total body radiation. Which was one of the worst procedures that I have ever had done. And on all those days sitting in that hospital room wondering if I was going to die here. To distract myself and to show my kids how much I loved them, I began to paint. Dinosaurs, Pirate ships, anything they asked for. I also began making paper dolls to take to the kids in the childrens BMT unit. Maybe it would cheer them up if I took them something fun and showed them that I didn't have hair either, but that I was ok. Maybe it would bring them hope. During my 100+ day stay in the hospital I was never alone. Either Marc, my mom, dad, or brother stayed with me. They spoon fed me when I didn't want to eat, gave me massages when my body hurt so bad that the narcotics didn't even help. They read to me, talked with me and tried so hard to cheer me up. After the second transplant failed it was pretty hard to cheer me up. I would just lay there staring at the sky imagining me picking up my family and driving as far away from this place as we could. Somewhere tropical. Somewhere where I wasn't sick. Somewhere that my kids didn't wonder if they would have a mommy tomorrow. I would love them and protect them the way I couldn't right now. The way a mom should.
Then the doctors told me that the results came back on the donor cells, and they were not viable. Basically dead. The good news is that it wasn't my body, it was the cells. The bad news was I had just wasted months of my life and needless chemo. They quickly found another donor for a third transplant. This last bit of chemo hit me so hard that I have nerve damage in my hands and jaw. It's pretty awesome to be in the middle of a sentence when your jaw starts to spasm. My platelets got so low that I had hemorrhages in both my eyes, leaving me partially blind. And my immune system was so low that I contracted fungal phenomena. Then right before transplant a bone marrow biopsy showed that there was a small amount of leukemia in my bone marrow that hadn't been there last month. After all the chemo and radiation I'd been through, that almost killed ME the stupid cancer was still there?! At least it confirmed that I made the right decision to do a bone marrow transplant. Without it we wouldn't have found the leukemia until it was full blown and I'd probably be dead right now. We went ahead with the third transplant. Marc sent me a recording of Brayden saying the nightly prayer and he asked God to help mommies bone marrow to work. It was a powerful prayer because by day 14 my ANC started to come up! 4 days later they kicked me out and said " be careful not to get an infection!" We went to a hotel close to the hospital. It felt so weird to be out of my hospital room. Marc took me to the new outdoor mall. I was bald, had a mask on and had to ride in a wheel chair I was so weak, but it was amazing to be free! That weekend the boys came to stay with us. We went swimming, went on a carriage ride, went to the park, and snuggled on the bed watching movies. It was wonderful! I had my family back! The day they had to back to grandma and grandpas Brayden said "mom, I don't want to go" I asked him why and he said "because I love you". I knew right then that nothing was going to keep me from being with my children again. At my next doctors appointment I mentioned it to my doctor and he encouraged me to go home and try to get back into a normal life, but to be very careful to not get sick. I was suddenly terrified to leave my safe bubble. I felt too fragile to be that far from the hospital! A part of me was also afraid of getting close to my kids again. What if they learned to trust that mom would be here and mom loved them.  And then I had to go back to the hospital. Or worse, if I died. That wouldn't be fair to them. Right after the appointment Marc packed our SUV full to the brim as fast as he could while I lay on the couch being useless. He got us packed and out of there in time for me to say goodnight to the boys. I feel like my life is in limbo. Marc is my caregiver so he can't apply for any jobs. I'm too weak to do much. We are doing a test next week to find out if the new bone marrow killed off the cancer or not. If it hasn't I will be taken off all immune suppressants in hopes that it will run ramped and kill the cancer!   If this doesn't work, there's not much more they can do for me. I just got my family back, I don't want to loose them again. My kids are so young, they need a mom. I can't imagine another women with my husband. We were meant for each other. Soul mates you could say. I have fought too hard and have to much at stake to loose the fight now. But I know that in the end it is Gods will that matters. I know that I would be just fine in heaven, looking down and watching my family grow up without me. But I choose to be here. I choose to work towards my dream again. And I'm not going to give up.

Chemo Brain

I really hate what chemo has done to my brain. I used to be very organized, loved to plan, and remembered everything. Now I have a hard time remembering what I did last week, and I have no desire to plan ahead. Today we were emptying out some boxes from my hospital room and as we came across books/magazines/and other gifts, I had no idea where they came from. My mom would say "remember that so and so visited and brought you this". It may as well happened to another person because I have no memory of it! Now, if your reading this and you came to visit me please don't think you efforts were wasted! I know that at the time I was grateful to have people come see me.
Then my family began telling me about things that I said or did when I was hallucinating. I don't remember any of it! I wish they would have recorded me. We could have won America's funniest video! I really hope that over time I get my brain back. I miss being me!

New checkup

I had a doctors check up on Monday. Aside from my fungal pheumonia, optical annurisn, and UTI, everything looks pretty good! My new bone marrow is making awesome white blood cells, and slowely my platelts are coming up. The only thing it's not making is red blood cells and hemeglobin. They said it could take months before it really kicks into gear. So the plan is that next week they will do a chimarism test that will show if I'm 100% donor or if some of me is still there, because if some of me is still there, the leukimia is still there. If it's not 100% then they will quickly take me off my immune suppression drugs in hopes that if turned loose my new white cells will go and kill everything! We should know the results in about 2 weeks. Sure, I have nothing to do but worry for 2 weeks. No problem!
The doctor also told me to go home and try to start getting back into normal life, so long as I'm careful to sanitize everything I touch and I get my butt back to Hunstman at the first signs of an infection. So terrified, I left my safety bubble. Since the first of May I have been banished to one room where nurses and doctors come in and out all day long to alter medications, or give me something good if I needed to calm down :)  And now, that's been replaced with dirty loveable little boys, going to the store, the park, everywhere normal people go, right? What I don't think the doctor understands is that it will never be normal again. My family will never have that peace of mind that tomorrow we will all still be here. Mom can't do much more than lay on the couch and snuggle (which is wonderful) We don't have a house of our own, or any income to speak of.  Everywhere I go I am the bald girl with the mask on....totally normal, right? This bomb shell of Leukemia hit right when we were planning the best time of our lives. We had been poor students for 9 years and finally my husband graduated with his Pharm D. We were supposed to buy a house in a good neigborhood with good schools. We were supposed to have another baby. We were supposed to be a happy normal family. Not one bit of our current life reflects that plan. Marc promises me that someday we will get it. Someday. Until then I am just happy to be able to lie on my couch with my family around me and try not to think of tomorrow. 

Decision

well, I've got a difficult decision to make. My doctor told me that I could go home back to Brigham as long as I promise that if there's anything weird or different I have to be willing to drive to SLC. Driving to SLC everyday would still be cheaper than the hotel here. so we said no problem there! So now I have to make a decision. It would be very helpful if I went home because my mom goes back to work next week and my kids start school. We are having a hard time finding someone that can watch the boys in the morning and take them to school. If Marc and I can home, we could do it! The problem is I would be exposed to children coming home from a grade school. Plus all the people that come to my parents house. Of course we are good at washing hands and me wearing a mask, but It's still risky. Here at the hotel I'm miserable and lonely, but I feel safer. I can control this envirnment. We are going to wait until after my next check up on Monday before making a decision. They will be doing a cat scan to see if my fungal pneumonia  is getting better. Because getting another infection on top of that would not be good! It would also be nice to see if my numbers are holding steady or even improving. I already saw the eye doctor and he said the hemmorage in my right eye is healing well, even though I still can't see out of it!
I just realized that I never told you about my horrendous nose bleed! They did a biopsy of my nasal canal. They had to put me out for it because I have a deviated septum and It would be too painful to be awake,. They were just making sure the fungus hadn't moved to my head, everything came out good there! Well, they got me back to my room as I was waking up and my nose started to bleed, like a faucet was turned on. Marc my nurse and I spent 12 hours shoving gaus  up my nose, and changing it when it was drenched. After a few hours I had lost so much blood that they gave me a blood transfusion!!  I was so glad when that thing finally stopped!
As for how Im doing, I'm getting stronger every day! I can walk from the car all the way up to my doctors clinic without running out of breath! I still have to ride in a wheel chair if theres alot of walking. Tonight Marc took me to the new mall down town. I felt pretty awesome in my wheel chair with my big blue mask on! Oh well, I'll never see then again anyway....hopefully!
Please pardon any misspelled words or mistakes, I am typing this with 1 good eye!

Out of the hospital!

Sorry I haven't updated in a while, the internet at my hotel is terrible! I got out of the hospital last Tuesday, just in time for Conners Birthday! I'm so glad I got to be there! Staying in the Hotel is ok, but I wish I could go home. The boys have spent the last 2 days with us, but they are going home tomorrow for back to school night and the rodeo! Once school starts it will be even harder because they will only be able to stay with me on the weekends. The Doctor said that after 30 here if I'm
doing really well they might let me go home, since Brigham City is just 20 miles outside there zone. I had my first checkup on Friday and while I was waiting for my labs I was in tears because I was so scarred I had lost my graft! When the results came in my ANC was 3500, which is much higher than they expecded. I was so releaved! I have another appointment on Monday, they are really watching me closely right now.  I have to take my temp every 4 hours and if it gets above 100.4 they will admit me. Everytime I take it and it's a good temp I feel like I got a "pass jail card"! As for how I'm feeling i am so tired!!I can barely walk from my bedroom to the kitchen. The doctor said that will slowly improve, but it usually takes a year before you feel really good. I really hope I can avoid infectioins and stay out of the hospital! Life on the outside is much better :)

Today is day 16 and I am showing signs of grafting!!   My ANC (absolute neutraphil count) came back at 832.   The doctor said that if my numbers remain high over the weekend, I could be released from the hospital on Tuesday!!   The only other thing that could prevent this from happening is if I got an infection before then.  I'm very excited about the idea of having my freedom back.   Once I am out, I will still have to be very careful about germs because I will be on strong immunosuppressents (this means my immune system will be somewhat neutralized in order to stop the new bone marrow from being rejected).   I will be gradually weaned off of the immunosuppressents over the next  two months or so and while that is happening, I will need to live close to the hospital.   If something happens and I can get to the hospital within 1/2 hour to 45 minutes, there is a good chance they will be able to deal with it.   If it is longer than that, the chances of survival drop dramatically.   Because my boys will be going to school in Brigham City and I will be in SLC for a while,   I will probably only be able to see them on weekends.   It will be hard not to see them every day, but it will be much better than now.  At least we'll be able to have sleepovers, go to the park, etc. whereas, right now, all I can do is visit with them for a few minutes in the lobby once a week.

Day 14

Today is day 14.
 I was awakened  by my nurse excitedly exclaiming that she had my labs.  She handed them to me and there was a big circle drawn on the paper where it showed that my Neutrophils are at 221!  I jumped out of bed and we hugged and danced.  The Doctors dont consider it a full graft until your ANC is at 500 and holds steady there for three days. I am so excited to have a second chance at life.  I know I am nowhere near the end, I still have to worry about infection and graft verses host disease.  But hopefully things can start to get a litle more normal in our lives. Speaking of normal, the doctors found some mold spores on my lungs.  The medicine they use to treat them causes hallunications. I'm just glade the Doctors warned me before hand. I might have freeked out when I saw thirty frogs jumping across the bathroom floor, or ivy growing on the side of my nurses face.  Last night there was a Yetti peeking through the window over Marcs shoulder ready to kill. At first I screamed then my Mom screamed, Marc jumped up and it ws gone. The hallucinations arent really scarey they actually make life more interesting. Who knows maybe tomorrow Matthew Maconaughey will stop by. I sure hope I packed my wig.  Some of the other things I have been experiencing this week are blindness in my right eye due to a blood clot.  A gusher nose bleed that lasted for nearly 12 hours all due to a nasal cavity biopsy. Water retention that has made me look like a puff ball. And hair loss for the third time. I'm SMOKIN HOT.