Monday, June 20, 2016

Hello from the Other Side...Or , YAY! We're not in the hospital!

"Home is the nicest word there is."
-Laura Ingalls Wilder 

We are home, for now, but most of you know that already. If feels so great to have my husband at HOME with us! It's nice not to have to rush to the hospital every morning (although we frequently go for blood tests and other appointments.) It's nice to be able to at least pretend that things are back to "normal" and it's nice to be able to see my husband happier. 

Being home however doesn't mean that he is cured.  Unfortunately AML is a marathon, not a sprint. How I wish that he were just "cured" and we were DONE with this chapter of our lives, but alas that is NOT the case even a little bit. We have a long ways to go still, and I frequently remind myself that I need to take things one day at a time.

We went for ANOTHER bone marrow biopsy today. My poor husband has now endured FIVE of these in the last month and a half! The doctors told us that when we come on the 29th to meet with the doctor we should have a bag packed. If the bone marrow biopsy is GOOD he will be admitted to start his consolidation chemo which would be about a week in the hospital (to keep the cancer from coming back) if it's not good, he will have to be in for another long bout of chemo, so another month or so. I'm praying for good results!

The bone marrow transplant team said they are having "difficulty" finding a match for Brian. They didn't exactly say why, but one doctor said something to the effect of "you never know who hooked up with who a ways back" so I'm guessing that to mean that my strawberry blonde, blue eyed, freckled husband has some non-european lineage in his DNA somewhere. One nurse said he was "unique" I of course knew this already, and am not surprised he can't do things the "normal" way. Every step of this journey has thrown us a curve ball, but I refuse to lose hope!

The transplant team discussed other possible ways to get the transplant done in the event they couldn't find a match, either cord blood which would be an advantage in that the stem cells in cord blood are young and need less "matches" since they aren't fully developed or using a half match as in one of the kids. Brian doesn't want one of the kids to be his donor, but when he discussed it briefly with them they were arguing over who would "GET" to be the donor! They love their daddy, and would be honored to be the one to help save his life!

Speaking of donors, and searching, we will be hosting a Be the Match drive at Ypsilanti Community Schools high school on July 15th from 3-7.  I need volunteers to come an hour early and learn how to help with swabbing and registering people. 

If you read this and you are able, please shoot me an email or message to let me know, even better if you are famous or something and happen to read this (Hint Hint Ellen, Blake Shelton, Bachelor Franchise folks...) and want to show up to make MORE people come out and try to be the match for somebody PLEASE DO!!  You might not be the "unique" match for my husband, but we are not alone in this battle and there are many people also searching for their perfect life saving match. 

I am so thankful to all the family and friends who have helped us out through the Meal Train, and the Go Fund Me page, and helping to get our Be the Match drive going. 

If it were not for your kindness and generosity I don't know what we would be doing right now. Brian will get social security disability but they won't even send a check until November! (This by the way makes ZERO sense to me, but that is a whole OTHER topic for another post some day...) 

Thank you, from the bottom of our hearts for all of your help, may your kindness be repaid to you tenfold and then some.

Now that my update is complete I need to get a Diet Coke and get ready for The Bachelorette.  

God is good. All the time. 

Thursday, June 9, 2016

When Life Hands you Lemons...

"The most important thing is to enjoy your life - to be happy - it's all that matters."
-Audrey Hepburn

I'm almost scared to say it, but my love has been fever free for close to 48 hours. His rash is gone, and his smile is back. His blood counts are starting to look good too. They did a bone marrow biopsy yesterday and I'm praying that they say he just took a little longer to respond to the chemo.  If he DID respond he SHOULD be able to come home in a few days for a couple weeks before starting his next round of chemo. This would be a much nicer scenario than starting more chemo tomorrow.  Please keep those prayers coming! I feel them working and when I look at my husband I SEE them working!

Since he was feeling good today he took me on a date. Yes, a date in the hospital! I'm still feeling all hearts and rainbows and unicorns. I'm sure you are wondering what we did for our date so I'll tell you!  First, we went to an art gallery and looked at all sorts of beautiful artwork in a variety of different medias. There were several different artists on display! (Fine maybe it was the Gifts of Art display on the first floor of the hospital, but it is quite impressive!) Next he took me out for drinks. (At the vending machine, my husband is quite chivalrous!) We also went to a jazz concert on the lawn in the courtyard and I managed to convince him to dance with me outside! I should mention that he held my hand and guided his IV pole at the same time like a boss. Today he told me he's sick of chemo and only wants to look at pretty things now, he also said I'm his favorite thing to look at. ((Swoon)) I felt like a teenager in love. One of the techs that takes care of Brian calls us the "love birds." I imagine there are a lot worse names that we could be called!

Our marriage has been through a LOT, and according to statistics we should be divorced several times over, but somehow we always manage to get through. We are far from perfect, but we are perfect for each other.

Just had to share my pretty amazing day, it's one I want to remember forever.

God is good. All the time. 

Tuesday, June 7, 2016

Looking for Rainbows

“Just when you think it can't get any worse, it can. And just when you think it can't get any better, it can.” 
― Nicholas Sparks

They say a picture is worth a thousand words. I have no words for this picture. I can't even look at it without tearing up. Our cancer battle has continued. A week of fevers and rash, lots of tests, medicines, questions, and fears, but not a whole lot of answers.  

Here's what we DO know. The initial induction treatment didn't work like we had hoped. Going in, Brian had 87% blasts in his marrow. The bone marrow biopsy last week showed that he still has 40 - 50% blasts. Our doctor told us he would be meeting with other leukemia specialists to come up with a plan. We met with him today.

Tomorrow he is going to have his FOURTH bone marrow biopsy since April 29th. The team felt that since his platelets and white blood cell counts were beginning to go up this would be a good idea to make sure that his first round of chemo didn't work. The tests they sent to Utah showed that Brian has a very complex genetic thing going on. He doesn't fit neatly into any of the sub types. We were initially told he had biphenotypic leukemia. Our current doctor did not feel that was the case and in fact still says that is NOT what he has. However he does have a lot of genetic traits of ALL leukemia, along with traits of AML leukemia. I'm not sure how having traits of BOTH doesn't make this biphenotypic (both types) but the doctor says it is NOT that. Instead my poor husband's diagnosis is now "acute leukemia with ambiguous lineage." I couldn't make this up if I wanted to. Ambiguous Lineage.  Great.  What's that mean you ask? Hell if I know. I think it means we are in a league of our own. I tried to google it. I can't find much. While I always knew my husband was unique and special, I never imagined he'd have to be that way even when dealing with serious illness. Here's a picture just in case you don't believe me. 

So, pending the results of the bone marrow biopsy, Brian will be starting MORE chemo on Friday. They have to wait until Friday because he needs to get off one of the anti fungal medications for three days because it can't be mixed with one of the meds in the chemotherapy. They will be trying GCLAC + P + V. Basically it's a lot of chemo for both types of leukemia. We are looking at probably another month (at least) in the hospital.

On the bright side, his rash is almost gone and he was fever free most of the day. We had a REALLY GOOD visit. We talked, and laughed, and snuggled. I can't kiss him because well, germs plus no immune system means no kissing, so sometimes we just cuddle up in that stupid twin hospital bed and snuggle. We watch court tv, and sometimes he just sleeps but it feels good to be in his arms where I belong. Today we were snuggling and the deacon from our church came to visit us! I think it is against Catholic to snuggle in front of your deacon, although deacons can get married and have children so I may have to get back to you on that one. We stopped snuggling and chatted with him and prayed. He said going through all of this means less time in purgatory for us, Brian later said that is great and all but HOW MUCH TIME DOES THE DEACON THINK WE WILL BE IN PURGATORY?!?! This hospital visit already feels like forever! I guess if I need to spend a few extra days in purgatory for snuggling my husband, it was all worth it. 

The kids are holding up pretty well all things considered. I'm working on keeping their lives as "normal" as possible. It's really hard wanting to be two places at once. My heart is continually being pulled in two directions, and I still can't kick the guilt of not being able to be two places at once. I'm praying for strength and grace when I'm not praying for healing. 

Here are my positives for today.  We have a plan. We spent a nice day together, and I saw more smiles this afternoon than I had seen all week. If anything this sickness has showed me HOW MUCH I love my husband. I wish I could take this all away for him. I'd do anything to see him well. (Remind me of this when he's in remission and grumping about me forgetting to pick up dog poop.) 

To my sweet husband, I hope you know that in sickness and in health. I will love you forever and for always, because YOU are my dear one. 

God is good. All the time. 

Thursday, June 2, 2016

The Waiting Game

"When all you feel are the shadows, turn your face towards the sun."
-Helen Keller

It has been a rough week. On Monday we got back the genetics report from Utah. (Finally) We were disappointed to find out that because of the genetic make up of Brian's leukemia he would definitely need to have a bone marrow transplant.  I would try to explain it, but honestly it's almost nonsensical to me. He has extra chromosomes on some DNA and is missing a chromosome on another number. Just in case you are wondering, it is only the leukemia cells where this genetic oddity is happening, it is not something that was there before. Originally the doctor had pretty much made it sound as if Brian's leukemia would be able to be treated with just chemo. We were clinging to that hope, and then that option disappeared. We were crushed, but after a bout (or maybe two or three or seventeen) of tears we regrouped and decided it was just another hurdle. We will just focus on getting better and then move on to the bone marrow transplant. We were as ok as you can be when you have cancer in your life. (Which honestly isn't saying much...)

Brian had another bone marrow biopsy on Tuesday. The doctor said we should have the results by today. Going into chemotherapy Brian had 87% blasts in his marrow. The blast are the bad cells. In order to be considered a successful induction, he would have to be 7% or under. Then we could move forward, get his blood levels closer to normal and head home for a few weeks. We were really hoping that he would be able to be home in time for Noah's graduation next Friday. Unfortunately for us the doctors switch rounds monthly and it's now a new month, so while the doctors still work together we don't see the regular doctor. The team came in for rounds today and didn't say a whole lot. Nervously I asked if they had the biopsy results and they said yes, but Dr. B would be in TOMORROW to talk to us about them. I felt as if the air had been knocked out of my lungs. I wanted to scream and cry that tomorrow is NOT OK, but I couldn't. I had to keep myself together for my husband and so that the staff doesn't think I'm a total nut job. (If I don't turn into a total nut job before this is over it will be nothing short of a miracle.)

I should also mention that my poor husband is having some sort of weird reaction to SOMETHING. They don't know what. He has a high fever, and an angry red rash, and he shakes all the time.  He isn't eating, he's tired, his eyes burn, and he gets exhausted simply walking. They took his picc line our yesterday thinking that could be a cause of possible infection, so now they have to poke him over and over for the endless tests they are running. He's slowly becoming a shell of his former self and it's all I can do to not just scoop him up and run away from the hospital and hide somewhere with him. But I'm well aware of the consequences of those actions and I am so NOT ready to just give up, and thankfully neither is he.

I DO trust the doctors and nurses.
I DO feel so blessed to have amazing friends and family who are helping us get through this.
I DO believe we will beat this.
I DO enjoy the brief moments we are able to escape the confines of his room and walk together.
I DO love my husband so much it physically hurts me to watch him go through this.
I DO believe in miracles.
I DO plan on turning our faces towards the sun to escape the shadows.

I wish... that all of this never happened, to us or to anyone else. EVER.

God is good.  All the time.