Thursday, December 13, 2012

Spotlight Supporters


We haven't done this in a long while but with Janette's passing I got this email from someone that did not personally know her but touched her deeply. We will be making this into a book for Marc and the boys and when Janette and I started this blog Spotlight Supporters was very important to her. So if you have anything you would like written on here to be added to the book for her family please go to the spotlight supporters tab and contact me. Thank you.


Janette-
We never met. I've never spoken a single word to you, and although we went to high school together I didn't recognize your face or name when I first learned your story from Brandie. You are now someone I will never forget. I so badly wanted to introduce myself to you at the fundraiser held at Box Elder High, but I chickened out. I wish desperately that I would have at least said hi because even from across the gymnasium, you had a light that I could feel. A light that I so desperately wish I had.
My daughter was born with a rare neurological disorder called lissencephaly. She is five years old, but functions at about a 2 month old level. She is visually impaired, severely developmentally delayed, suffers from seizures almost daily and doesn't speak. After I heard about you, I would sometimes talk to London about you. I would tell her that she was strong like Janette. And I know that that is true. I know that your situation was completely different from hers, but hearing about how you fought and fought, and were such a positive, strong woman, I felt like London would like to hear about you. And I know she did.
We never even met... but your light affected me. I'm sure there's little comfort my words could bring to your family at this time, I'm glad you are no longer suffering.
God bless you, Janette, Marc, Conner, and Brayden!

~Danielle

Wednesday, December 5, 2012

Angel Marielle Hayes

A professional photographer name Marielle Hayes has selected Marc, Brayden, and Conner to benefit from her Christmas fundraiser. She is offering a beautiful photo for anyone that donates that made her think of Janette. So you help by donating but you get something for it too. Please check out her site for all the details. This is amazing. Marc is so grateful for all of your love and support. He is managing well as super dad but missing his soul mate. Your support is really helping to lift him up though. So from all of his family they just want to thank you so much for everything. Check out Marielle's site even if you're just looking for a amazing photographer.

Sincerely,
 Brandie

Monday, November 26, 2012

From Marc

Message From Marc

Thank you to my blog friends and family who give me strength and the ability to face another day. The many posts sent to me and my wife are so touching and wonderful. This is by far the hardest thing I'll ever do. I spent the past year as a caretaker for my sweet wife. I am grateful for every single day I had with her! Whether it was in the many, many hospital nights praying for Janette Baron Andersen pain to subside so she could rest or the many opportunities I had to just tell her how much I love her and would do anything for her. The way she handled such a horrible situation with such grace made it so easy to take care of her. I would have continued to do that for many years to come if God had allowed me to. But that is not to be. He has taken her back to her heavenly home where she no longer feels the pains and weaknesses of our human bodies.


To the many many people who donated time and money that allowed me to spend 100% of the final year of my wife's life on this earth: THANK YOU! You will NEVER know how you have blessed my life. As i said before, i was able to tell my wife everyday multiple times how much I love her! I am so grateful for that! I never had to worry about money or bills or anything that took my attention from Jan's needs. I wish I could hug you all because of this tremendous gift you have given me.

I love my wife, I KNOW where she is and that she is no longer in pain. Her Father in Heaven is with her and all of us who grieve her passing. I am so grateful for eternal families. I will see her again in the next life! What a sweet time it will be.

Friday, November 23, 2012

Our Angel

Janette lost her battle with leukemia yesterday. She put up a long and strong fight but she knew god always has a plan. Right now he needed Janette. We know it's cause she is one of the best. She has left a lasting impact on so many peoples lives. She was the most beautiful person inside and out.
When we started this blog it was to give Janette a place to talk about what is going on, update everyone, and just vent out her feelings. We never expected to be here less than a year later having 35,000 hits. Her words will go on to help so many more people. Her story will inspire people and she will live on through Marc and her kids forever. 

Janette was the most incredible wife to her soul mate Marc, the most loving, attentive mother to her boys, the best daughter, sister, granddaughter, and friend.


























Sunday, November 18, 2012

No fun

The past two day's have been horrible! On Thursday night we started an injection called interfuron. It is supposed to stimulate my new bone marrow so that it can attack the leukemia. The problem is, it is very hard on your body. It gives you terrible fevers, body pain, nauseu, and causes your numbers to drop in your blood. Well, Friday morning I noticed that I was beggining to get some blood blisters in my mouth. In the past I have never gotten those unless my platelets are under 20. And the last time they were under 20 is when I had 3 occular hemmorages. So I went to my local ER and had them check my platelets. They were at 41. That was very strange to me. The on call doctor at huntsman told me that he wouldn't infuse me at 41, but to continue to look for other signs of bleeding. As the day progressed one of my blood blisters got bigger and bigger until it was the size of a penny and jutting out from my cheek so I couldn't close my teeth without biting on it. I knew that it wouldn't improve unless I got some platelets. So I called my doctor back, at this point it's 9:30 at night and he tells me to go to Ogden regional to get some platelets so I wouldn't have to drive clear to SLC. I was also concerned because 9:30 is when I get the interfuron injection and I am supposed to take tylonal and IB prophen with it because it causes such an inflamatory response in your body. I was terrified because those meds would thin my blood even more! So I called up my sweet dad and he drove me down to Ogden Regional. Lucky for us, they were pretty empty so we got right back. However, they had to do a typing screen which takes about 2 hours, then order up the platelets which takes another hour, then one more to infuse. Everyone there was pretty fascinated with me, it was kindof funny! My nurse had never seen a central line like mine before and she really liked it! The doctor was very curious about all that I had been through and sat in my room just talking and asking question for about 45 minutes! Once the platelets were almost done I decided to ask the ER doctor to take a look at my stomach. Over the past two days I had been having alot of stomach pain in my upper stomach, and it was begging to swell up. I told the docs at huntsman about it, but they said to just watch it closely and wait (I am so sick of hearing that answer!) But this doctor began feeling around my stomach and immediately said that my liver was very inlarged. She brought in an ultrasound machine to look at it. She said the tissue walls looked fine, and there wasnt much fluid outside of it, it was just really big! We didn't know if it was graft vs host, which is what we are waiting for, or something else.  So they wanted us to go down to huntsman the next morning so they could run some more tests. So we left the ER at 3:00AM, I didn't get to bed until about 4. Then the kids came in to get us at 7:45. I was so tired but Marc didn't want to let me sleep because he wanted to get to huntsman as fast as possible! When we got there they ran some blood tests and found that my liver enzimes are a little elevated. Not to the point of liver failure, but they were trending up. The other thing is that my platelets were at 31! Just the night before I had an infusion and before the infusion they were 41! So I am really freaking out about my platelets. They are just too scary. They said they didn't want to give me more today because the more you get, the more resistent to them your body becomes. So I am going down to the local ER tomorrow to get them checked again and make sure I'm safe. The next thing they did was a CT scan of my mid section. First I had to drink 4 cups of contrast that tasts like dish soap! They had to give me some zofran in order to finish my last cup! They did the tests and about an hour later the doctor working that day (who I knew pretty good from when I was inpatient) Told me that I do not have graft vs host....:(   he said it looks like the leukemia cells and this new interfuron injection are attacking my internal organs!! My spleen and my liver are very enlarged. Also, the signts where I had my gall bladder surgery last spring, they were attacking the scarr tissue! Those are actually the parts that hurt the most! My stomach is so swollen that I look like I'm 5 months pregnant, and it hurts so bad! But there's nothing they can do for me right now because I HAVE to stay on the interfuron until I get graft vs host to insure my bone marrow is fighting. I get another injection of my donors cells this Tuesday, so that should speed up the process a bit. The other interesting thing they said is that my labs look weird. My blood was full of blasts (we expected that, it's what the leukemia makes) But there is also a large amount of broken cells in there. Most of them are the leukemia cells. So Something is beggining to kill the leukemia! They werent very clear on what other types of cells they found broken as well..... The one dangerous thing about this, is now my body has broken dead cells that it needs to get rid of. Which could cause a blood clot, or my kidneys to get blocked. So I am supposed to drink ALOT of water!
Even though I feel terrible, I am so grateful that I am able to still be home. I hope I am for Thanksgiving! This is a very scarry and long road, especially since I am the first AML patient to recieve this treatment at Huntsman. We really don't know what to expect. I am feeling like it's going to be  very difficult for a while, but I believe this will work.  Now I just have to stay focused on that each day,

Monday, November 12, 2012

Here is the plan

We met with Dr Pulsipher today to discuss his plan. He explained that just a few weeks ago he attended a seminar that completely addressed patients who relapse after a bone marrow transplant. There was a new study that they presented. He said the study was only done with 17 people, therefore it wouldn't have normally made it to this seminar to be discussed. But the results they were having were so positive that they spent a great deal discussing it. Out of the 17 patients, 70% went into long term remission (more than 2 years.) He said the technique is not all that different, and the drugs aren't new (which is great because they already know correct dosing and side effects ) the difference is that they used to give people perhaps a little bit of chemo, then another dose of their original donor cells. The problem with that is that the chemo sometimes damaged the new bone marrow, and the new donor cells aren't strong enough to stand up against the leukemia. So in this plan, he takes out the chemo altogether  (ya for no more hair loss!). Instead he immediately took me off all my immune suppressants to see if my new cells could make a dent in the number of leukemic cells. Next (probably this thursday)  I will begin receiving twice a day injections of interferon which will put fighter T cells into my bone marrow (navy seal of immune system). If I am still doing ok after all that then they will give me a dose of my donors cells. Basically they are trying to trigger graft vs host, therefore graft vs leukemia. Yet they want to stop the interferon at the first sign of graft vs host so as not to give me enough that it would become dangerous. The worst part about the interferon is that thee common side effects are feeling like you have the common cold. Fevers, chills, nausea.....So they recommend doing the injections at night and taking a lot of Benadryl! We will probably be doing a lot more bone marrow biopsies to track my progress. Their goal is to do all this outpatient, but just the slightest problem could have me admitted again. If this doesn't work, then he say's basically all they can do is give me low doses of tablet chemo to try and give me some more time. As in months. So that my family and I can go on vacations, and just be together. I really pray it doesn't come down to that. I wouldn't be able to make myself say goodbye.

Wednesday, November 7, 2012

More bad news

Since I am apparently blogger stupid I had to post the pictures in a separate post than my update! If anyone could teach me how to work this thing better, I would appreciate it!
Anyways, We had those pictures taken just before the storms hit. First, Conners front tooth fell out the very next morning! (whew, good timing) Second, Obama won.........Third, my Leukemia is back.
That was not something that I expected at all. I found myself relating to my 6 years old sons wisdom today. He used his piggy bank money to order a toy from amazon. I warned him that it would take a few days to come. It had now been 5 days, and no package. When we came home to no package again today Conner said "why hasn't it come?! I think I've learned patience by now!"
Me too Conner. Me too.
After spending a YEAR receiving enough chemo that it should have killed me (and almost did a few times) and THREE bone marrow transplants, how could it still be here!!!!
But of course, my good doctor has a plan. As of today I will be taking no immune suppressants. He is hoping to induce graft vs host, therefore inducing graft vs leukemia. We are just hoping the graft vs host isn't bad enough to land me in the hospital. If after 1 week I'm doing ok then they will give me medicine to boost my immune system. Then a few days after that they will give me a rein-fusion of my donors cells (apparently they froze some just in case this happened). So basically, because chemo is apparently not doing the job, they are hoping that if they make my new immune system really awesome then it will kill the cancer. Which is really the whole point of a bone marrow transplant anyway. My doctor said that this is a fairly new treatment plan, but so far it has shown pretty good results. So we are trying to stay optimistic. I am not leaving this earth without a darn good fight.

photos

My wonderful friend Brandie took these photos for us.








Monday, October 29, 2012

A little stressed out!

Well, I've spent quite a bit of time and the BMT clinic this past week. Last Tuesday I noticed that I was feeling more tired than I had been. Also I felt that small activities left me short of breath and my heart racing. Then on Wednesday I began to have chest pains right around my sternum. To top it off I began to have some stomach pains and I noticed that on my right shoulder where I had a blood clot last April, the blue veins in the area were more pronounced. So I immediately called the clinic and they told me to come right in. Marc and I drove down with an overnight bag just incase. When we got there they did numerous blood tests, and a CT of my lungs, heart, and the veins in my chest and shoulders. The CT came back showing that everything was normal "for me" The pock marks on my lungs were healing, my heart was it's normal size, and there were no clots to be seen. All my blood tests came back normal as well, Infact my hemoglobin even went up a little on it's own! My Doctor was out of the office that day so his PA and nurse were the ones taking care of me. They were stumped. They concluded that since they had ruled out anything serious that I could go home and call them if my symptoms got worse. They are so patient and caring! The next morning they even called to check on me.  Well, my symptoms didn't get worse but they definitely persisted. So today when I went down for my weekly appointment I got to see my actual doctor this time. He came in and said "looking at your labs, I am very pleased with how you are doing, but I am worried because you are worried!" I explained all of my symptoms. We did a few more test, EKG, an ultrasound of the veins in my shoulder and chest, a complete physical and more blood tests. Everything came back as normal as they could be under my circumstances. My doctor then told me his theory. He asked me if I am worried about anything. I told him that of course I am! next Monday they will be doing my 100 day tests including a bone marrow biopsy. If the results aren't good, then everything will immediately change in a very bad way! He say's that he thinks I am having a ongoing panic attack. He pointed out that only 2 weeks ago they stopped one of my antidepressants (yes, I said one...) and the day before the symptoms began I was at clinic, saw that my hemoglobin had dropped a whole point, and I was given the schedule for my testing next monday. He said that it is actually proven that in Lymphoma patients about a week and a half before they have a scan done to see if they are still in remission, they experience alot of the same symptoms I am having including shortness of breath, and chest pain. It seems so strange that my body could be responsible for so much without me even realizing I was that stressed! He wants to wait until we get the results from my tests next week, and when we see that they are good my symptoms should dissipate.  He is however still stumped about the blood clot. But he assured me that when all my tests come back good next week, and if I am still holding onto my hemoglobin, then he wants to get my central line taken out. He said that will eliminate the threat of more blood clots, and lower my risk of infection dramatically. He said that 2/3 of people who are going to come out of remission do it during the first year after transplant. The second most common time is the first 100 days after transplant, then the second year after transplant. After the second year the odds of it coming back are less than 2%. So he said that it's a very good sign that I made it through my 100 days still being 100% in remission and no graft vs host.  They all admitted that I am doing much better than they expected me to do. In leukemia they don't have "stages" they mostly just go on the genetic make up of the cells and if it is full blown leukemia. So if they had stages, I would have been stage 4. Put my two failed transplants on top of that, plus the extra chemo and radiation, and apparently they didn't have very high expectation of how I would do. (glad they didn't tell me that at the time!) So that made me feel better that I am doing better than they even thought I would.. I made it past another hurdle! I would really appreciate it if you all would be willing to say a prayer for me this Sunday, that I will still be in remission and all the tests go well. Until then I will try to do more yoga, and take some xanax!

Thursday, October 18, 2012

Lessons Learned

When most people hear about someone being diagnosed with Leukemia I think most of them wonder "how long do the doctors think they'll last" or something close to that. I have to admit that I used to think the same thing. Strangly when I was diagnosed I immediately felt that I was going to be ok. That doesn't mean that I haven't been terrified every single day for the past 11 months. But deap in my heart I have believed that I was going to make it. I don't know if I'm even at the half way point, but I do know that I've lasted longer than most. I don't know why. I've wondered if God is preparing me for something bigger?  Maybe, mabye not. But I do know that in this relatively short time I have learned alot. I have learned that you can feel lonely in a room full of people. That most people are good, and caring.  That there really is a reason we pay for health insurance :)  I've learned that God hears every sincere prayer. He usually answers them through other people. On seemingly small example of this took place last January. I was in the hospital recieving more chemo. For some reason I was going to be alone that night, which has been a rarity. Around 10 o'clock I began to feel terrified, hopeless and very alone. I said  a short prayer asking for help. It turns out that one of my friends from church happened to be at the hospital at that very time bringing something that her husband that worked as a doctor there had forgotten at home. After she delivered it to him she had a strong impression to come visit me. At first she hesitated thinking that it was late and I was probably asleep. But the prompting came again so she went back to the elevator. She knocked on my door and slowly opened it to find me sitting in bed crying like a basket case! She came and sat by me and talked with me until I felt calm and peace again. I knew then that God really hears me.
I've learned that even through immense physical pain, the emotional pain is far worse, and lasts much longer. I've learned how many people love me, and really would do anything for me. I've learned what drug dependency and withdrawls feel like. They are much worse than I ever thought. I've learned what it feels like to have everyone you pass stare at you because of your appearance and wonder what is wrong with you. I've learned that while a beutiful house and a fashionable wardrobe would be nice, all I really need to feel happy is a loving Heavenly Father and my family.
I'm sure if I thought some more that I would come up with many more things I have learned. I hope that because of this I can be a better, more compassionate person. I hope I get the chance to try and help others. And really make a difference.

Wednesday, October 10, 2012

I am blessed!

I just have to express how blessed I am. This sunday it will be 80 day's since my transplant. That not only means that I have been home with my family for 80 days, but I haven't gotten a dangerous infection or graft vs host disease. Now I'm not saying that there won't be difficult times in the future, this still could be a very long road. But I cherish each and every day that I have. Today I walked three blocks to the park with the kids, and back home again. I know that doesn't sound like much, but it's alot for me! I am able to live in a house with my little family and take care of them, and Marc is getting some hours at a local pharmacy. It probably sounds so basic to everyone else, but to me it's a miracle and a blessing. There were times when I really thought I would never have this. Hopefully things will keep getting better. When I hit 100 days they will start to taper me off the immune suppressants. That means that I won't have to worry as much about getting a dangerous infection, and hopefully I can become transfusion independent. At that time they will also run just about every test possible to get an idea of my general heath, along with a bone marrow biopsy. I know that I will be scared every day for the rest of my life that it will come back, but especially when I get a bone marrow biopsy done. Because I know that if it's back my life will immediately change, and my treatment will become much more challenging. I still get worried to hope for the future, but I can't help but imagine what this holiday season will be like home with my family. Last year I had thanksgiving in the family waiting room of the hospital, and christmas sitting in the lobby with my dad looking out at downtown Birmingham, almost deserted with everyone home with their families. I pray that this year I will get to be home with my loved ones. I would also like to ask for prayers that an amazing women will get to be home with her babies as well. Her name is Kari. She had a bone marrow transplant this summer as well and is currently in the hospital with some complications including some leukemic cells coming back. Please pray for her and her family. I know that when people come together for one cause and ask God for a miracle that amazing things can happen. Thank you for all your love and support!

Wednesday, October 3, 2012

Latest appointment

It has been a crazy week! We are moved into a house! Not all the boxes are unpacked but thanks to some great friends and family all the essentials are in place! The frustrating part is that Conner has been sick since Monday and unable to live with us. He came down with a terrible cough, his voice was hoarse, he had a headache and body aches. His cousin that he goes to school with had the same symptoms so my sister was nice enough to let him stay at her house. This morning she said the kids were doing ok and asked if I wanted to meet them at the park with Brayden. When we got to the park Conner began playing on the toys and running around. After just a few minutes he ran over to me. He looked scared and was wheezing with every breath. You could tell that he needed to cough but he couldn't get enough air to cough. I immediately put the boys in the van and drove to the hospital. (with a very good mask on!) By the time we got there he had calmed down and was breathing a little better, but still wheezing. They did a chest x-ray and it came back normal. The doctor took a look at him and said it looks like he has bacterial bronchitis. They gave him a prescription for antibiotics and steroids and sent us on our way! I was so sad that i still couldn't take him home. My parents were good enough to take him for the rest of the day and night. Now I am watching Brayden like a hawk for any signs that he's getting sick too!
At my doctors appointment this week we got some good news and some bad news. The good news is that my chest x-ray came back "much improved" from the one I had a month ago! They said they can still see the pock marks where the fungus was, but it looks like the fungus is gone! The other good news is that my white cells have gone up a little, and my platelets took a pretty big leap! They are now in the normal range! The bad news is that my red blood cells and hemoglobin went  down quit a bit. They still think it might be drug induced. There are three drugs that could cause it but two are the anti rejection drugs that they can't start getting me off of for another month or so. The other is a drug that prevents pcp pneumonia (one you can only get with a compromised immune system, like the fungal pneumonia)  There is one other drug they could use for that, but it increases the QT wave in the heart which is something I've had trouble with in the past and is nothing to mess around with! So I hope my doctor can come up with something clever! If I could be transfusion independent then they might take out my central line! Hopefully things will just keep getting better. I just keep praying that tomorrow will be a little better than today!

Tuesday, September 25, 2012

Praying for hope

I think I may need to see a therapist. I've realized that I am terrified to hope.  Things are changing and I am scarred. Thanks to some good friends we will be moving into our own house. Just us four. Marc and the boys are excited. I am too, but I just can't get over this fear. I want to freeze time until the doctors tell me I'm all better and give me permission to move on with life. But I've realized that it doesn't matter how scarred I am, how sick I feel, or how tired I am. Life goes on. There will always be meals to cook, bedtime stories to read, and laundry to do.  I guess I don't have much choice in the matter. Partly I'm feeling discouraged because at my last appointment all my numbers had gone down. The doctor says that it's completely normal, and it will go up then down for a while. But I definately didn't want to see that. The other part that scarres me is my aspergillus (fungal pnemonia) I don't feel like it's getting any better. I'm coughing all the time and by the end of the day my lungs feel so tired. They are doing a CT scan on Monday to see if it's gotten better or worse. If it's worse there is only one other medication to treat it, but it only comes in IV form. Which means I would most likely have to be in the hospital to get it. The treatment lasts 3-6 months. There is no way I am going back there for that long!! I would appreciate some prayers if you all wouldn't mind. I am definately praying for another miracle.

While I was at my last appointment in the lab to get my weekly blood tests I noticed the lady in the chair next to me looked very sad and nervous. She had a full head of hair and was getting her blood taken through an IV instead of a line. So I knew she hadn't gone through chemo yet. In my efforts to get her talking I asked if she was preparing for a transplant (obviously she was since it was the BMT lab, but I still hate to assume). She looked at me, hesitated, then looked down and quietly said "um, yeah." I got the hint that she didn't want to talk about it. But it got me thinking. The reason Leukemia is so scary is because you never hear about the survivors. I don't blame them, obviously, just like this woman she just wanted to get it over with and never think about it again. Maybe they think that if they pretend it didn't happen then the pain will go away. I remember growing up that whenever I heard anything about Leukemia I had a feeling of foreboding. I didn't know why, but I instinctevely stayed as far away from it as I could. I didn't want to learn about it, I didn't want to hear about it. I guess I thought that somehow, caring would somehow give me the disease. I was wrong. Just because you ignore something doesn't make it go away. Infact, I feel like leukemia and all cancer survivors went through that specific challenge for a reason, and if they don't figure out that reason and learn as much as they can from it, then it's kindof like they suffered for nothing. If I have to go through this and fight this hard, then gosh dangit something good is going to come from it! Even if it's just hope for future patients.  I suppose that to give hope I need to have it myself. So that's where I will start. I need to shift my thinking from just getting through today, to what are the plans for next month? And next year?  So here I go! Jumping back into life with both feet.  Wish me luck!

Wednesday, September 12, 2012

Good News

I am 100% donor!!  I could hardly believe it when they told me. There's always the possibility that the leukemia could come back, but it's much less likely to happen if my new bone marrow was able to kill off all my cells.
Now my biggest challenge is to avoid an infection. I am at day 50, and around day 100 they will slowly take me off the immune suppressants and I won't have to worry as much! My immune system won't be nearly as strong as a healthy person until about a year out. That's about how long it takes for my body to create T-Lymphocyts. (Marc said they are like your navy seal of your immune system!)
This definately is a marathon and not a sprint! I am slowly getting used to living with my limitations, and learning to not worry about every little pain or cough. (although I have called the on call doctor a few times with some pretty stupid concerns!)
I am so glad we finally got some good news! Maybe now I can relax a little :)

Friday, September 7, 2012

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.

Saturday, September 1, 2012

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!

Tuesday, August 28, 2012

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. 

Wednesday, August 22, 2012

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!

Sunday, August 19, 2012

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 :)

Sunday, August 12, 2012

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.

Thursday, August 9, 2012

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. 

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!

Brayden(4)
-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

Peace

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.

Brandie

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!!!