Monday, July 30, 2012

Day +4

Today is day +4 of my third transplant. So far things have been going alot differently than the first 2 which we are taking as a good sign! First of all, the day after the transplant my white cells went up to .3 which is the highest they've been since April! They are on a decline now which is what they should do before they start to go up again, but that tells me that at least these cells are alive! Another difference is the immense pain! From my hip bones to my feet it feels like someone dumped acid into my bones (I guess that's not to far from the truth though, right?) They have been trying to manage my pain but nothing they gives me takes it away. It makes the pain tolerable for about an hour, but then it shoots back up again. They now have me on a pain pump where I can push a button every 15 min and get a dose of Dilaudid (which is about 6 times stronger than Morphine) So at least now I don't have to wait for a nurse to get me meds! The other hard part about this time is the extreme fatigue! To illustrate my point my mom say's that I have to share my brownie story with everyone. At about this same time of my second transplant my mom was staying at the hospital with me. She had made some of my favorite homemade caramel brownies! I was reclined in bed watching TV when she asked if I would like one. I said of course I would love one! So she brings it over to me and I take my first bite. I began to chew when suddenly my head falls back and I'm asleep! My mom woke me up and asked if I wanted to finish my brownie. I said I did and took another bite. When I started to chew...waaam...I was asleep again! Well this went on about 5 times before she finally decided she would slide it out of my hand so I could sleep without making a mess! Just as she touched the brownie my eye's flew open and I grabbed her hand yelling "I'm not done! I promise I won't fall asleep again!!" I was then able to finish the brownie and have a good long nap :)
The best news I have gotten today was from my doctor. Throughout this whole process he has never given me a compliment, only warnings to not get an infection! Today he was telling me that there will be a new doctor rounding for the next few weeks and that he would be sure to brief him on my situation and let him know that especially after all that I have been through I am doing extremely well! ya!! That meant alot coming from him!

Thursday, July 26, 2012

3rd transplant!

My third transplant is in! It is going to be a tense few weeks while I wait to graft!

Monday, July 23, 2012

A Hero

Tonight I want to say goodbye to a hero. You won't hear about him on the news. Although he deserves to be paid tribute. His battle was against Leukemia. Ryan was a 32 year old father, son, brother and friend. He fought so bravely for so long. His battle ended tonight. His body was so strong for so long, but he was mortal and could only take so much. On his last day his lungs were full of infection, there was a hole in his heart, his liver was all but dead, his vertebrae was broken and his brain was full of infection. And still he held on. Only after his mother told him that it was ok to let go did he finally close his eyes and was released from this earthly life. He is no longer in pain. He is now surrounded by our Heavenly Fathers love.
It isn't fair. Cancer claims so many lives. I promised Ryans mother that I will honor him by never giving up. There is a saying on numerous plaques here at Huntsman. It reads:
Cancer is so limited
It cannot criple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy people
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

Cancer may take the mortal lives of many, but thats where it's power ends.

Saturday, July 21, 2012

Filtered Lenses

What if we each see the world through filtered lenses?
Lenses of our own design made to keep out what we think will hurt us?
We come into this world without a filter. But quickly we learn what we want to except as reality, and what we will pretend doesn't exhist.
We think these lenses will protect us.
But what if they are keeping us from experiencing real joy, happiness and love?
Each trial that we go through puts a crack in our lens. 
Every sorry, disappointment, and heartbreak reveals something we had hoped to block out.  Then we are forced to feel. To REALLY feel. 
Seeing the sorrow lets us appreciate the joy. Seeing sickness helps us appreciate health. Loneliness shows us how precious friends and family are.
At some point we will each have to pass through a trial of such magnitude that we will either cling to our lenses, or let them burn in the fire. 
Only then can we see people for who they really are. Children of God. And only then can we stop clinging to this life, because we see eternity. 

Friday, July 20, 2012

Time Home

My time home was wonderful! I still think the doctors were a little crazy for letting me go. Here they would only let me see my kids if I had a mask on. Then they sent me home where I could snuggle with them all night if I wanted! Whatever their reason, I'm glad they did it. I was obviously being watch over because even with all the precautions we took it is a miracle that I didn't get an infection.
One of the best things about going home was that I was reasurred that my boys still love me. In the hospital I kept worrying that they would forget about me, or not need me anymore. Boy was I wrong! Those sweet boys cuddled and talked to me all week! Even though mom was borring they were still glad I was there. I got to see some of the things that I have missed out on the past 2 months. Some of the highlights were.

Conner (5)
-Learned to swim in the deap end of the pool!
-Learned to whistle! He can mimic any tune he hears!
-Can ride his bike without training wheels like a pro!

-can go down the big water slide all by himself!
-Almost completely potty trained! (finally!)
-can dress and undress himself with no help.

They seem so much older than they were in April! I know it's crazy but I feel like they have learned and grown so much. I felt bad leaving them this morning. They were in a terrible condition! Last night Conner got 5 wasp stings!(I have never heard someone scream so loud in my life). Then they helped grandpa weed and apparently they had a bad reaction to the weeds because when they woke up this morning they both had bright red faces with blisters! I know it wasn't a sun burn because it was at 7pm and they were on the shady side of the house. Poor boys!
Well, I've gotten settled into my new room here. They are starting my first dose of chemo in 1 hour. I can hardly stand the thought of poisoning myself again. It is really hard mentally to let that happen, but I know how that I need it. I can't believe that in just 3 weeks I could have my own bone marrow again! I really feel like it's going to work this time and that I will be ok. I still feel at peace. I pray that I can hold onto that!

Monday, July 16, 2012

Doctors appointment update

I went to a doctors appointment today. They had to do another health workup for my next transpant. So we had to do blood tests (15 vials! for someone who isn't making blood, that's a lot!) We did an echo cardiogram, and a pulminary function test. Then we met with our doctor. I'm glad it was my doctor this time and not just the doctor on call. The doctor on call is the one who told me my leukemia was back and he said it like he was giving a weather report of thundershowers. My doctor is actually quit nice and has a sense of humor. I asked him how it was possible that after reciving so much chemo that it almost killed me, THEN wiping out my bone marrow and doing total body radiation, how did the leukemia come back so quickly? He said that Leukemia is the most aggresive, elusive, and resistant cancer there is. Especially AML. Not to mention I am in the high risk category. When I do things I sure do them all the way! So he quite frankly wasn't surprised by it coming back. He said my bone marrow has been sitting there empty for 2 months now so the leukemia had an easy job of moving back in. He believes that if my own bone marrow would have been able to recover, or if I had grafted then my cells would have crowded out the leukemia and probably killed it. Because of that he thinks that me grafting as soon as possible is the most important thing right now. The plan is to give me enough chemo to supress the leukemia so it doesn't interfere with the graft. But he doesn't want to give me too much chemo and damage my organs. He says my body has been through enough and he wants to try to go easy on it. The major change in this transplant is that usually they give you medicine to surpress the graft so that you graft slowly and reduce the risk of graft vs host. But they are not going to give those to me because they just want me to graft so desperately! If I get graft vs host then we will deal with it then. The one thing about graft vs host is that it is a good sign that the new cells are also killing the leukemia. So there is a silver lining.

After the appointment we picked up the boys from aunt Kierstens house. I think they like her house better than ours! They are always asking to sleep over there! Good job aunt Kiersten! Anyways, as we were loading the boys in the car Brayden gets a huge smile on his face and says to me "Mom, is your cancer all gone now?!" I wanted so badly to say YES!! But instead I explained that mommy still needs to get new bone marrow and the new bone marrow will kill the cancer. This poor child has been asking this question for 9 months now! I know that 9 months to a 4 year old is an eternity! I hope he doesn't give up on me.
So, to sum up, the plan is for me to start chemo this friday and get my transplant on the 26th. Most people start to graft on day 14 but my doctor told me not to be surprised if I do by day 8 or 9. I may have to be admitted on Wednesday depending on my labs that morning because my phosphorous and potasium levels were high today wich could be a sign of the cancer cells braking down and releasing these into my blood stream. If the levels go up even more then I have to be admitted to get them flushed out of my system before we begin chemo. So tomorrow I am just going to enjoy my family, then begin gearing up for the battle.

Friday, July 13, 2012


I wanted to share with you the miracle that has happened the last two days. When the doctors told me that my Leukemia had returned, I was terrified. Marc and my mom were with me and the news hit us all like a ton of bricks. After the doctors left and we were packing up my room for me to go home we were all pretty silent. By the time we left the hospital something amazing had happened. We felt peace. Not the peace of someone naively believing that everything will be ok. We know the seriousness of my situation and we are terrified. But we felt peace that only our Heavenly Father can give us. Shortly after Marc and I began discussing how peacful we felt we began recieving phone calls from family members. One after the other they spoke of a frantic prayer said, and immediate peace. Thankfully it has stayed with us which has enabled me to enjoy my time with family. At first I was nervous that I would loose it infront of the kids and scare them. But I haven't even come close. I know that the road ahead will be extremely difficult, and probably quite long. But I know that I am being held in the arms of my savior. He knows that past, present and future. His plan for me is perfect. I am going to fight my hardest and I know that he will make up the difference.

Thursday, July 12, 2012

Bad news

The doctors came in this morning with some bad new. They got the results from my bone marrow biopsy back. My Leukemia has come out of remission. It is still in the very early stages, infact it is still contained in my bone marrow. It hasn't gotten into my blood yet. We are still going to follow the basic plan we already had in place. We are going to do a third transplant as soon as possible. It was set for the 26th, but they are going to try to get it going sooner so the leukemia doesn't have a chance to overtake my bone marrow. They previously had not planned on doing chemo before this next transplant, but now those plans have changed. They are going to do as much chemo as they think my body can handle. The good news is that they are letting me go home for a few days. They are getting me set up with home health care, and I plan on coming down on monday to recieve blood and platelets. We should know by monday the exact date of the transplant. The thing we are nervous about me going home is that I still don't have an immune system, and an infection could prevent them from giving me the chemo that I need. So we are going to be very careful. I would appreciate all the prayers I can get. Thank you!

Tuesday, July 10, 2012

Tomorrow will be better!

Well, I've been trying to find something good that came out of the last two months so that I don't drive myself crazy! So far the only thing I've come up with is the extra chemo and radiation that I recived after the 1st transplant failed. I wonder if I had some leukemic cells left that were hiding out and without the extra treatment maybe my Leukemia would have come back in a few years. If 2 months was the price I had to pay to stay in remission for the rest of my life then I suppose it was worth it. Of course I have no way of knowing if that was the case, but that's what I'm going to tell myself so that I can feel better about things.
Yesterday the massage therapist came in. I swear that guy has a crystal ball! As he was massaging my back he asks "you've been worrying about your kids haven't you?" I of course asked how he knew. He said that when we are stressed we tense different muscles depending on what we are worrying about. He said that the financial stress muscle felt fine. (No point in worrying about something I can't control!) The muscle where we worry about ourselves felt ok. But the muscle where we worry about others was in knots!! About 10 minutes later he says "have you had trouble taking deep breaths?" Oh my goodness. Just the other night I woke from my sleep because I felt like I couldn't breath! Every time I tried to take a deep breath it felt like my lungs were going to collapse! Apparently I love freaking out the nurses in the middle of the night :) It was pretty fun that he was able to tell me the past, but man I wish you could see the future through a massage!! The point of this story is that in the middle of his fortune telling he told me a story he recently heard to make me feel better. He said that there is a cancer research scientist that just lost 10 years of his research because someone forgot to plug in a fridge....WOW! Ok, I lost 2 months, he lost 10 years. I suppose he won!

Marc got here last night to spend the next few days with me. We were both feeling depressed and miserable about our situation. I was trying to figure out how to cheer us up when a quote that my grandma used to have hanging in her kitchen came to my mind. It read "you can't change the past, but you can ruin the present by worrying about the future". That really hit me. I will never get those 2 months of my life back, no matter how upset I am about it. I can't even change my current situation. All I can do is make today the best it can be and hope that the future holds better news and happier days.

Monday, July 9, 2012

Bad batch of cells

We got alot of information from the doctor today, so I am going to try to give an accurate update! After the first transplant failed the doctors were really trying to figure out if it was me, or the donor cells. Aparently the donor centers have so many safety controls in place that they have never before recieved a bad batch of cells. But they decided to go ahead and send some of my donor cells in for testing. In the mean time they decided to go ahead and transplant the cells into me and see if anything happened. Well, just last weeks they got the resuls back from my donor cells showing that the cells were basically dead. They infused me with dead cells. Yes, upon learing this I nearly had a tantrum that would rival all three year olds! I have just waisted two months of my life for nothing. lovely. So, back to my recent labs. We did see a small spike in my cells count, but it has gone back down again. The doctors suspect that there were a couple of living cells that tried to do their thing, but failed. The good news here is that the problem lies with the donor cells, and not with me. So the plan is to do another bone marrow biopsy tomorrow (number 6....) So that they can see how many cells are in my bone marrow and if they are donor cells or mine. That way they can know weather I will need more chemo to clear out my bone marrow before the next transplant. Every time I think I'm done with chemo, they come at me again! The date the donor center is giving them for the next donor cells to be here is July 23. My doctor is hoping we can get them a little earlier, but the donor is going through a health screaning this week and it takes a week to get the results back. So it is pretty hard to speed up the process. In the mean time I will sit here in limbo, trying not to get an infection. Apparently the nurses are baffled by me. They said they have never seen someone be neutropenic this long without an infection, or needing TPN(Nutrition through their port) They all agree that my good health this far is a miracle. I know that it is the faith and prayers of all of you. Thank you so much for that. It is making all the difference.

Over the past nine months I have been through some of the worst physical pain of my life (and I've had 2 c-sections) but by far the hardest part is the emotional pain. When I decided to do a transplant I thought I was giving myself a better chance of survival. I never even considered that I wouldn't graft because the chance of that happening was almost non-exhistent. And now I sit here and wonder if my decision to wipe out my bone marrow is going to kill me. When I made the decision to do transplant I felt in my heart that it was the right thing to do, and I still do, but the big elephant called death is still a frequent visitor to my room. Also, my heart breaks for my children. Brayden and I used to be best friends. We were always snuggling, and we just knew and understood each other. We were never apart and thats the way we liked it. But now when he visits he is distant. I know he still loves me, and he misses me, but it is different now. I want so badly for things to be the way they were, and maybe one day they will come close. But for now I am trying to mourn my old life. I think that's important to do before I can accept what my life is now, and will be in the future. Conner also is having a difficult time. When he visits he wraps his arms around my neck and says he doesn't want to leave. When he gets sad about me he always asks to snuggle grandma, but he refuses to talk about me. The most he will admit to is that he is sad about me, but then he changes the subject. I'm scarred that he is holding too much in. Trying to be too brave. I wish I knew how to help him. I can't even reasure him, or make promises of things to look forward to. I try to talk about "when mom comes home" but I never dare estimate when that will be. I just pray that when this is over my family will be closer because of it. Poor Marc is trying to study for the law and naplex exams to get liscenced in Utah. He is also trying to find a job, be mom and dad, and be strong for me. He is my hero! I know that if we can get through this together that nothing will tear us apart. I am so grateful for his strength.

Saturday, July 7, 2012

Visiting Super Woman

I spent Monday and a little bit of today with Janette. I can't help but post about it.

Monday I was preparing myself the whole way to the Huntsman Center to see her, truly expecting to see her somewhat comatose or out of it at least. With the bags and bags of medication she has hooked up to her right now I thought for sure she would be half conscious. Which was ok with me cause I knew she'd at least still know I was there. I walked into her room and she popped right up out of her bed. With her beautiful smile on her face. So incredibly positive and strong. We hung out all day. Talked and talked, cried, laughed, joked... etc. At one point we went for a walk and I was pushing her bags of meds along side her. We went all around the bone marrow unit floor and when we were going back to her room Janette began doing lunges in the hall. LUNGES are you kidding me? I immediately feel like a failure I don't even do lunges. She is incredible. I spent ALL day in AWE of her strength, endurance, resilience, faith, spirit and attitude.

Today I came in and she still had that smile on her face but I could see that she was barely keeping it together. She told me right away this is a rough morning. She almost seems as if she feels guilty about that. That's how much she thinks about everyone around her. So her and I cried together some more. While I was there the doctors came in and talking to them they said they are all just dumb founded. They don't know what happened with this bone marrow transplant. They really are in the dark at this point. I felt so frustrated for Janette it's one thing to know you're sick and be going through all this. But to have the doctors not know why and to have to sit in that room day after day not knowing how long it will actually be is the worst. We all have a strong feeling that this is a FREAK thing because something about that donors marrow was just not right for Jan.

Just like every time I go see her we spend most of the time talking about the boys. That's one thing Janette and I have ALWAYS had in common was our desire to be a mom and spend every day with our children being the ones to care for them. Conner and Brayden are her EVERYTHING. When they are all looking back on this time they will know how much their mom did for them. Being away from them for a short time to be with them for the long. It literally hurts my heart to watch her miss them and want to hold them and kiss them so much. It makes me feel so guilty that I get to be with mine. But also makes me not take it for granted.

Janette wants and needs to know some good things are coming out of this. That is one of the things she's impacted so many people made them see the things that are important and put things into perspective. She's shown what one person is capable of. She's such a inspiration and is going to help so many people once she's all better and this is just a memory. She needs now more than ever to know that.

Growing up I would watch Beauty and The Beast and Snow White and Sleeping Beauty. I loved all the movies so much. I still do. As I got older they met different things to me though. I would dream of this prince that would come sweep me off my feet and the perfectly beautiful children we would have. Today while Janette was talking about Marc and how incredible and as close to perfect as you can be I couldn't help to think about those fairytales. Janette and Marc have been living theirs since high school. It is so unfair that she has to be pulled from her perfect for her life right now. I'm sure she's so sick of hearing about how short of a time this is compared to the rest and it will be over soon. Because truth is it's so much easier for us to say that not being the ones doing it or the ones away from our kids. Janette you will be back to your FAIRYTALE I hope as soon as physically possible.

I know this was just a bunch of random thoughts I put together but it was stuff I didn't want to forget. Janette you are so AMAZING! I love spending time with you. I can't wait til the day your numbers go up and we CELEBRATE!! Even more so I can't wait til you're out of there and home.


Friday, July 6, 2012

Hard Week

well, I hope ya'll had a better 4th of July than me!! It was a long, hard week. First of all, my numbers have not come up. If they haven't come up by next Tuesday they will do another bone marrow biopsy. If it shows that my bone marrow is empty then we will proceed with a third transplant from a new donor. They have already found a new donor but apparently the donor isn't available until August! When my doctor heard that he apparently got very upset and told the man in charge of communicating with the donor center that August was not acceptable and they needed to put my request in as urgent and find a new donor if the current donor can't get his butt in sooner!! I'm very glad that my doctor is fighting for me. You know how if feels when you wait in line at the DMV for 20 min? (or if your in Alabama make it 4 hrs!!) You feel like you just waisted 20, right? well I feel like I just waisted 59 days! For an organized active mom that is pure torture. I no longer desire to learn patience. It's much to difficult to learn!
Anyways, the second thing that made the week hard is I started to have a strange reaction to one of my anti-rejection meds. My hands and feet began feeling like they were on fire!! I was in so much pain on the 4th that I actually remember very little of that night. My kids came to watch fire works and play games. I spent the whole night trying to pretend I wasn't hurting. It's funny how pain and pain meds take away your memory like that. I think the boys had a good time though. By the time I got back to my room the pain was unbearable. My feet were red ane swollen and it litterally felt like they were on fire. Oxycodone, Morphine, and Delodid had no effect on the pain. My poor nurse and Mom spent the night Icing and rubbing my feet. By 5am I finally fell asleep for a few hours. The next morning they took me off the IV of the troublsome medicatiohn and put me on a lower dose in pill form. That did the trick! I have had no burning since then.
This moring when I woke up and my numbers had gone DOWN I felt very depressed. My mom let me cry on her shoulder. She told me that she was proud of me because even if I did it with tears running down my cheeks at least I continued to put one foot in front of another each day. I had never thought about it that way. Not giving up doesn't mean you'll be happy all the time, it just means that you get through the day and try again tomorrow. Hopefully tomorrow will bring better news!

Monday, July 2, 2012

Lesson on bone marrow transplants!!!

Marc and I often joke that if there is a small percentage of something happening, then it will happen to me. I've said before how it was rare for me to have heart damage, infected gall bladder, kidney failure, and lung damage. The doctors were very stumped by me, and still are for that matter! I get the strangest reactions to medicine that doctors have either never heard of, or is rare. Some strange reactions I've had recently are rigors, chills, severe headache, extreme sensitivity to touch, a terrible bumpy rash, and a burning itchy rash that randomly moves around my body during the day. Here are some other odds:
Me getting AML Leukemia- .001%
Rejecting the transplant- 1% (My doctors here have never seen someone with a perfect match reject)
Well, my luck with terrible odds finally paid off today. Last week Marc took the kids to a relay for life and entered into a raffle for a free cruise. We got a call today that we won the cruise!!! I think it will be the perfect way to celebrate my one year graduation from transplant next year!

I have been told that alot of people don't know what a bone marrow transplant is, or how it works. I have been asked to try to explain the basics, so here I go!
Leukemia is cancer of the blood. It begins in the bone marrow where blood is made. Blood starts out as immature blasts. When those blasts mature they become either red blood cells, white blood cells or platelets. Then they are released into the blood stream where they live for a few weeks giving the body what it needs. Someone with leukemia creates immature blasts, but releases them into the blood before they mature. They then become useless space takers in the blood. As time goes on there is less and less room in the blood for white blood cells, red blood cells and platelets. Eventually the blasts take over and the individual dies from lack of useful blood.
Treatment begins with large amounts of chemo to kill off the damaged cells that create these immature blasts. Once the cancer cells become undetectable you are considered in remission, but just because they are undetectable does not mean that they are gone. Science has not come far enough to look closely enough to find every last cancer cell. The hope is that after 3 or 4 rounds of chemo, all the cancer has been killed and the bone marrow is clean. However, they have found that in about 70% of patients the cancer survived the chemo and over time grows to the level where it is again detectable. You could argue that 7 or 8 rounds of chemo would be more effective, but the fact is that most patients cannot survive more than 3 or 4. So in order to be sure that the cancer doesn't come back, the healthiest of patients are then advised to continue onto transplant. The idea of transplant is to completely obliterate my defective bone marrow with chemo and possibly radiation. I then recieve donor bone marrow that is put into my body through my central line. The donor cells find their way to the bone marrow and hopefully make themselves at home and begin their job of producing blood. In order for a person to be a donor the doctors look at the donor and recipiants blood. The match goes much deeper than blood type (infact, blood type DOESN'T need to match!) A perfect match is a 10 out of 10. Many people never find a 10 out of 10 match and have to settle for something less which is more likely to be rejected by the recipiants body or cause dangerous graft vs host disease (which is when the body fights with the donor cells). The donor goes through a very thorough health check and if they pass then they are given the drug neupogen for a few days which encourages their body to create extra stem cells. (basically stem cells are the bone marrow) Then they have one IV put into each arm. In one arm their blood is taken out, a machine filters out the stem cells, and whatever is left is put back into the donor in the other arm. This process is called extracting periferial stem cells. This is a fairly new method. The old method is to actually drill into the donors hip bone and use a hollow needle to extract bone marrow. This is a very painful process and is now rarely used.
So, where I fit into all this is.....I have recieved stem cells from a 10 out of 10 match donor. The stem cells never began producing blood. The doctors speculate that perhaps I have a few fighter t cells left in my body and they killed off the donor cells. That is the reason the doctors had me go through total body radiation before being given my second transplant. I personally believe that if their were fighter t cells that survived, then there were also cancer cells that survived. I think the radiation was nessicary for me to stay in remission. Thankfully my donor sent enough stem cells for 2 transplants. So after the radiation I was given the other half of the donor cells. We are currently waiting to see if this time they graft into my bone marrow. I have to remain hospitalized for all this because with my bone marrow being obliterated, and the new marrow not grafting, I have 0 immune system and I have to recive blood transfusions every 4-5 days to stay alive. With 0 immune system if I got an infection it would be extremely dangerous.
The doctors have given me until Thursday to show signs of grafting. If I haven't by then they will perform yet another bone marrow biopsy (ouch!!) to get a closer look at whats going on. If I don't accept this graft then it is most likely a problem with the donor cells, not my body. They have already contacted a new 10 out of 10 match donor for a possible third transplant. The new donor is currently undergoing a health check and should be ready to donate some time next week if need be. So right now I get to sit, wait and try not to get an infection!! I hope this all makes sense to everyone. I am no doctor so I apologize if I got something wrong, or just ended up confusing everyone!!!