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.


My wonderful friend Brandie took these photos for us.