Celebration of Life for Andrea

Hello Friends,

I assume most have heard, but just in case there is someone here who has not yet been informed, Andrea passed away of leukemia (AML), Wednesday May 11th, surrounded by her family. There are no words to express how deeply we love and miss her.

The schedule for Andrea's funeral services are as follows. 

Visitation (closed casket), Wednesday, May 18, 5-7pm,

Funeral service, same day, Wednesday, May 18, 7pm

Services will be held at the Church of Jesus Christ of Latter-day Saints, 11565 Temple Drive, Carmel IN 46032 (next to the new temple in Carmel, IN.)

Graveside service will be held the following day, Thursday, May 19, 10am at Cicero Cemetery, approximately 7850 E 236th Street, Cicero, IN 46034

We send our love and gratitude to you for following her blog and being concerned for her welfare. She treasured you, her friends and family.

A great big hug,

~Kim

Big Thank You From Andrea!

          Brian and I have been given permission by Andrea to post on her blog. Andrea’s had a rough few weeks with medication reactions followed by infection with fevers and severely low white blood counts. During the worst of it she asked us to stop treatments. Things had gotten beyond complicated, and it was time. She’s currently sleeping comfortably and enjoying a private acoustic guitar concert given by a talented young man, a music therapist. She loves acoustic guitar music, and feels calmed and relaxed by it. He played beautiful quiet music, and then asked what Andrea’s favorite songs were. Pretty soon we were all singing to, "Three Little Birds", “Don’t Worry be Happy”, and even “Bohemian Rhapsody”.

          Andrea, Brian, and I had a goal to bring her closer to home, but because of her long list of medications she has had adverse reactions to, we have chosen to keep her here at Cincinnati Children’s. They have a pain med Andrea likes and does well with, should she need it, and it can only be administered here -- even hospice cannot administer it.

          Andrea was able to have a lovely visit with her children Sunday. They went outside, Andrea in the wheelchair, and the kids played in one of the lovely fountains.

If you would like to visit Andrea, you may contact Brian or I (Kim), and we’ll give you details and let you know if it’s a good time.

          I’m sure Andrea would like to say thank you to all those who have helped her throughout her life. She will always love and appreciate you for being there for her.

Just Call Me Murphy

Murphy’s Law—if it can go wrong, it will. It’s been one thing after another in rapid fire this March! Starting in February I contracted RSV and am still fighting off the remains of it. The RSV turned into pneumonia in my left lung. Then I found out I have an E.coli UTI (tmi?) which is common for post transplant patients. And here’s the cake—after going in to Cincinnati (March 9^th) to find all of this out, they took my blood for a CBC and cultures. They found leukemic cells. I’d relapsed. They admitted me for IV antibiotics for all that was wrong with me. When I got released a few days later, I started to have severe shoulder pain to where I couldn’t sleep and was in tears. Brian took me in to the local ER. I had a superficial blood clot in my arm from my IV. Awesome. So the docs prescribed some pain killers. My body seems to hate pain killers, but I was determined to celebrate Little Man’s 4^th BIRTHDAY!!! Yay!!! So I took the medicine and it was working decently and I made it through the day! That evening when I was about to take more meds, I started itching terribly. I stopped the meds immediately and sat around with frozen veggies under my arms and on my tummy until the itching was tolerable enough to get up. And of course the natural thing to do at that point is clean out your fridge… So I’m cleaning out and rearranging, and a big glass storage container came jumping out, landing solidly on my pinky toe, breaking it. Just call me Murphy.

So I kinda dropped the bomb that I’ve relapsed. It’s been a shock for all of us. Living with Li-Fraumeni Syndrome, I’ve always known that I’d keep getting cancers, but I was really hoping to have a bigger break than less than a year. We’ve been keeping it pretty private this time around and are asking all your respect in this as well. Time is precious, and we just want to spend as much as possible as a family. I will still try and keep you updated on this blog, but I make no promises. Robert D. Hales says, “When you can’t do what you’ve always done, then you only do what matters most.”

Know that we love you all very much.

Let's Be Real

Living with Li-Fraumeni Syndrome (LFS) and being hit with cancer after cancer, not only in yourself but within your family, you get really skilled at “stuffing”. You “stuff” down your feelings so that you can function on a day to day basis. The problem with this is that it will always catch up with you. That has been this past week for me. It was a perfect storm of trials and I just hit a wall. Since I last blogged, I have been hospitalized for various things like a rotavirus which temporarily robbed me of my independence. I had to relearn how to do even basic things like walking steadily or standing up. It was an incredibly humbling experience. After that, I got pancreatitis, an aggressive form of pneumonia, another respiratory virus that is HH-something-or-other, and on top of those things, the antibiotics they gave me caused me to have severe insomnia which caused severe anxiety which didn’t help with the insomnia…. Along with the stress and drama of being a foster parent along with other personal matters in my life? *sigh* whew. So yeah, I hit a wall in a major way. When you live with LFS, it’s so easy to question. It’s easy to feel alone, that even those closest to you don’t even understand. When you’re always getting sick, whether it be cancer or illnesses due to your weakened immune system, it’s easy to start feeling like this is your life. It’s easy to feel like there is no relief in sight. No real relief, at least. You have periods of time when you get a “break”, but even during those ‘breaks” you begin to feel like you are always waiting for the other shoe to drop. Every headache, you think “Is it a tumor?” When you feel short of breath, “Has my hemoglobin dropped? Has my leukemia come back?” When you get pneumonia and it’s hard to breathe, “Is this how it will feel if I ever get lung cancer?” Every new allergy you develop to an antibiotic or pain killer, “What on earth will I do if I ever need another surgery?” Every happy moment shared with a loved one, you wonder how many more of these moments you have left? Every time you hear, "Keep fighting! You'll beat this!" you think, "but for how long?"

It’s easy to start to question what it is that God expects of you. Why do you have to go through so much?

While thinking about these things a while back, I was reading through one of my favorite books, “Visions of Glory,” by John Pontius. There was an excerpt that hit me rather hard at the perfect moment: “I understood that I would also be called to suffer so that I, too, could be purified, completed, in Christ… and I had to submit to this process willingly.”

“Is there no other way?”

No. There is no other way. I guess it should be a “well, duh!” moment that these things are here to purify and complete me in Christ, but it doesn’t make it easier to go through. Even Christ, in Gethsemane, asked for the bitter cup to be removed. I cannot even fathom all the pain He suffered. I know what my pain feels like, alone. I just can’t imagine feeling a whole world full of pain and suffering…. I don’t want to know what that feels like. And it just makes me love Him all the more. I have so much love for Him.

Although I’ve hit this wall, I’m starting to climb it. Christ is there for me every step of the way. Through this bout with leukemia, I’ve come to know, without a shadow of a doubt, that Heavenly Father loves me. He knows me. Personally. He is in the very minutes of my life. He cares about every seemingly trivial thing. Everything He allows me to go through is for my good. Everything I go through, I wouldn’t have to go through if there was no point. There is a plan. Sometimes I get glimpses of it. 99% of the time I just have to trust.

“Jesus is the Christ, the Savior of the world. Everything depends on Him. We’d better find a way to stay close to Him, and if we can’t, there’s not much hope. He is what we need.” –L. Tom Perry

"...Or for that of those you love."

I’m officially the worst blogger in blogger history. But it’s ok. I think I’m ok with that. I just honestly haven’t felt like talking. At all. About anything. With anyone. I’m not depressed or anything, I am just in this mood where it just makes me tired to think about it all. So don’t take it personally :) I avoid phone calls from people whom I love dearly just because I don’t want to talk. It’s not that I don’t want to talk to them, I just feel tired at the thought of using my brain and mouth to form words. It’s really bad! And I feel the same with my blog. It feels a little daunting to have to recall all the events over the past months since I’ve last updated this. BUT, in light of recent events (itching- I'll mention it more later), my doctors have increased my current dose of steroids and I am finding myself to be wide awake at 2am and having the energy and desire to update the blog! So I’m going to roll with it and hope I get it all typed out before this wears off!

It’s been busy over here, to say the least! I’ve been in the hospital more than I’ve been out. Christmas was amazing. I spent the week leading up to it in the hospital, but was released Christmas Eve just in time to head to my mom’s to spend the night and enjoy Christmas festivities. My mom’s house is the perfect Christmas backdrop. She lives in the perfect environment with the wood-burning fireplace and everything. Just add snow and you have a Christmas commercial. We all opened our Christmas jammies on Christmas Eve and I did some last minute hemming of Lee’s jammies since I made them, oh, about 8 inches too long! Haha! But everyone else’s worked perfectly and they were a lot of fun. The girls had French macaron fabric and the boys had batman. Santa came. And came again. And came again. Seems like Santa left presents for the kids at every relative and friends’ house for the kids!! We are still sifting through santa’s presents. It was a very generous Christmas.

The day after Christmas, the kids’ grandma surprised them (we were in on it, of course) with a trip to Florida! It was such a blessing because I had to go in for chemotherapy and so it was a chance for the kids to spend their vacation doing something fun, and left Brian and I available to take care of my health without having to make sure the kids were also having a good Christmas vacation from school. We were very, very grateful for that.

Chemotherapy has been, relatively, a breeze. No nausea, no usual awful side effects. I get hooked up and it runs a giant syringe pump for about an hour, I get unhooked, and go home/back to the hotel. The worst I’ve experienced have been hair thinning, a few mouth sores, a little loss of food taste, and fatigue. Fatigue is my main complaint. I get chemotherapy for ten days at a time, and during those ten days, I could pretty much sleep for 15 hours a day and be completely fine with it and still feel like it’s not enough. I know that probably still sounds like it’s rough to most of you, but compared to other chemotherapies I have been through that literally wipe me out for a whole week? Like, I’m LITERALLY not cognitively there for days at a time. Hallucinating, drugged until I can’t hardly function, you name it. I’ve lost whole weeks of my life to chemo. The last transplant I went through, in Seattle, Brian and my family will tell me stories and I will have absolutely no recollection. It’s just gone. So I feel like I can safely say this chemo has been easy.

Now for the exciting and good news; Heavenly Father continues to bless me with a hard-working, record-breaking, miracle body. My doctors have informed me that I have done in two rounds of chemotherapy what it takes everyone else to do in three rounds or more. I have absolutely no doubt in my mind that this is the Lord’s doing. The testing of my bone marrow shows that my leukemia is completely under control, to the point where my own immune system has come back in full force and created graft vs host disease issues! This is good and bad news! Good news because it shows how well I’m doing and that I’m ready for transplant, but bad because for the past week, I’ve been itchy, itchy, itchy (which is why I'm increased on steroids, and awake at 2am writing a blog)!! Itching is so maddening. Brian has been such a heaven-sent through it, though. He will literally sit there and scratch my back/body for an hour and help me put on steroid cream. "And the best husband award goes to…" :)

So here we are, all caught up to today. The donor is all lined up, the date is set (I will be admitted March 4^th to begin induction chemotherapy and the transplant will only be about a week after that, once my bone marrow “clears out” and makes room for the donor), testing is getting done, everything is falling in to place.

Can I just say how good Heavenly Father has been through this? I cannot even express my gratitude. He has taken care of things I hadn’t even foreseen, before I even knew I needed the help. Friends and family have stepped out of the woodwork and covered needs. Our two year old foster son has been accepted into an educationally based daycare that’s really hard to get in to so we haven’t had to worry about him or who is watching him all day. Our seven year old foster daughter has had her needs met and then some, being able to continue to work on her own educational needs and catch up to the level of her classmates and where she is expected to be. They are both INCREDIBLY bright children and I am so proud of the progress they are able to make with the help of our friends in my/our absence.

I also want to share with you another reason why I know Heavenly Father has been so good. Acute Myeloid Leukemia is not a small beast to slay. The survival rates aren’t great. Just look at my own immediate family. AML has been the last straw for each of them. So being diagnosed with this was… hard… but I’ve felt nothing but a sense of calm this whole time (minus the initial mis-diagnosis back in April 2014 when I was told I basically had only months to live). I was told that the chances of even getting this leukemia into remission enough to receive a transplant was around or less than 20%. That’s not a great number… But it’s just a number. Someone has to make up that 20%. I knew I’d be in that percentage this time around. I just felt so calm. I was thinking about this once day while I was driving to Cincinnati for treatments and appointments, and I just had a random Sunday school lesson pop into my head. There is a story that I must have slept through in seminary, about a war and those on the Lord’s side volunteers in the tens of thousands. The Lord said, “hey we don’t need this many people,” so the commanders cut back to thousands. The Lord said again, “hey, we don’t need this many people.” So the commanders cut back and cut back until they ended up with only 300 soldiers, going up against this massive army. I felt a little like those 300 soldiers, coming up against this cancer that had taken so many of my family members. Why was I being spared? I still don’t know the answer, but I remember the comment made in class that the Lord cut back His army to this insanely low number so that these people would have NO DOUBT in their mind that it was the Lord who spared them. I have no doubt in my own mind that this is a similar situation. The Lord is giving me this trial to show that He loves me and is control and will protect and spare me, if I but trust in Him. I want to clarify that I don’t think I am more or less faithful than any of my other family members by saying this. I know that the Lord will never take you before it’s your time to go. He will not take you because you lack faith or because you have misbehaved. I say this because it’s been a testament to me that my work on Earth is not done. Perhaps there are more children who need us to provide a safe home and loving arms for them that only we can provide… whatever the reason, I trust that Heavenly Father will help to guide me as I let Him and together we will get it done :) I love being an instrument in His hands. I LOVE SERVICE.

I can feel my thoughts getting foggier so I will wrap this up. I just want to give a shout out to my amazing husband. This life is not for the faint of heart, and he willingly signed up for it. I knew Seattle would be a trial run for him before I agreed to marry him. I know it probably sounds harsh but he had to prove to me that he could handle this life. Obviously he passed with flying colors back then, and here we are, three years into our marriage, and he is proving himself all over again. I’ve seen him grow so much in patience, maturity, spirituality, in father-hood, and in so many other beautiful ways. While I am in Cincinnati, he is working full-time, taking college courses, and being a single father. It is so hard for me to watch him go through this and see the stress it puts on him and me not to be able to help out like I want... but it brings me so much peace that this situation could not be in better hands.  He is truly amazing and I fall in love with him and who he is becoming more and more everyday. When he has the chance to, he comes and spends time with me at the hospital and we are able to have talk about the important things in life. Conversations that we would not be able to have in normal life settings with kids running around or your normal daily to-do list needing to be done. It's been such a blessing. And when I get anxious about the situation at home, I think of this quote I found a few months ago that I feel like it is very fitting for this:

"...or for that of those you love."

I love, love, love this because now when I feel anxious for Brian's well-being, or even for other family members going through this with me, I think of this quote and know that the Lord has big plans for ALL of us. He is in complete control. He has us all in His watchful eye. He is in the minutes and SECONDS of our lives.

So in closing, I would like to promise that I’ll update this more often, but I just don’t know. Bear with me as I deal with my emotions. I’m just going to be gentle on myself and give myself permission to update this when I feel like it :) Just know I love you all and think of you often. I thank the Lord for you daily.

"STILL ALIVE!!"

Today I receive my tenth and last syringe full of decitabine for this first “round”. Although it’s seriously the EASIEST chemotherapy I have ever received in the history of the chemos I have ever received, I still feel like greeting every morning like that scene in “The Croods” where the whole family pops out of the mound of popcorn in the morning, with triumphant fists in the air, and they all shout, “STILL ALIVE!!” I know this is grossly exaggerating it-- because seriously, when I tell you this is cake, this is cake-- but it still brings a smile to my face, that scene. I love “The Croods”. I think it gets funnier every time I watch it.

For those interested, my day usually looks like this: Arrive at the Day Hospital. Wait around for height, weight, and vitals to be recorded, medications and allergies to be reviewed, then the doctor looks over everything and “releases” the chemotherapy. The nurses run an anti-nausea drug (Zofran- some of you may be familiar with it) for about 15 minutes then hook me up to the chemo syringe for about an hour, then a saline flush for about 5 minutes. Then they unhook me from the pumps, go over my discharge paperwork and future appointments, have me sign their discharge papers, and I’m FREE! It’s so so easy, I may be getting spoiled. I seriously think I will cry if, after a few rounds of this chemo, the doctors tell me it isn’t working and I have to do the “sledgehammer” treatment, as they so correctly call it.

As I was sitting here typing, the results from my lumbar puncture came back! NO CANCER IN MY SPINE!!!! I cannot tell you ho relieved I am…. I don’t know if I could have mentally handled two lumbar punctures every week, which would have been the treatment plan had there been cancer in my spinal fluids! GRATEFUL TO HEAVENLY FATHER. GRATEFUL BEYOND WORDS.

The plan from here is that I will get two weeks off to be fairly normal (with weekly checkups, blood and platelet transfusions in Indiana if needed, and hopefully no fever), then around December 27^th, come back to Cincinnati for another ten days of decitabine. Two more weeks off, the ten days chemo…. I’m not sure how many “rounds” of that I will have to do before they can tell if the decitabine is working or not, but it sounds like a few months worth. It’s all been outpatient so far. Well, not including the first couple of days they kept me inpatient to make sure I tolerated everything well, plus for my CVC (central venous catheter, aka Hickman) placement-- they wanted to make sure everything was honky dory with that.

So that’s our plan! And in our off time, we have been cruising around Jungle Jim’s (if you have not gone, I highly recommend the trip! It’s like a foodie’s Disney World), checking out the local eateries, and been in search for a decent winter coat for myself, although I’m not sure how much I need it since I feel like I’m in a constant hot flash, keeping the rooms and apartments at around 60 degrees—I hear leukemia can do this to you? My poor family.... all bundled up... Love them!!