I would trade

Jeff is known for finding great music and yesterday he found the band Clarensau. The song that left us in tears was "I Would Trade". The song says, "I would trade all of my days to take the pain away..." a feeling we have felt countless times.

Have a listen...
Clarensau "I would trade"

Today we will go to Riley to get Ev's final two shots out of 24 in the past month. These shots are painful but effective.  Ev also seems to be more achy all over. So, taking his pain away is just one thing I wish I could do for him.

Today is also the last day of delayed intensification. We will begin maintenance on Tuesday, February 4 with another spinal tap and vincristine. His counts have to be higher to begin this phase, so my guess is we will be delayed a week and that actually sounds great to me. This is an exhausting journey, even with help from family. I can't imagine if we didn't have any breaks or date nights. Thanks to our beautifully loving family!!!

Maintenance is full of chemo drugs, but ones that can be given at home instead of at Riley. It also seems to include meds that he has already had. This phase continues for a long time. I don't have it all laid out yet, but we have about 2 1/2 years more of treatment...so somewhere in there.

We will eventually get on a schedule of going to Riley once a month, but I don't think that will truly happen until March and even then we could find our way back by how hard the chemo drugs hit. But, this phase "should" be less intense.

While writing this post, Ev climbed up behind me...

One day at a time

We went to clinic yesterday and Ev's ANC is 196. He was in the 1200s last Tuesday. He's dropping pretty fast and his platelets are too. Our doctor is great at preparing us in many ways, from the current moment to the next 2 1/2 years. I soak in all that he says as I think about what this means...who can watch Ben? Ev can't rough house, it's too dangerous...what meds are left until we get another break? how long will our hospital stay be if I have to bring him in for a fever? can he wait until wednesday for a platelet infusion, can he wait until Friday for a platelet infusion? Ugh! Can I make any of this stop?! ...No.

Apart from the chemo shots Ev had yesterday, he did really well in dealing with what was happening. He hates those shots more than anything...so now he gets a surprise after each of them. There are so many times that I just want to shower that child with new gifts, but I know that's not what would truly help him, nor is it what he truly wants. Nothing beats hugs, kisses and encouraging words. 

Ev is currently crossing the finish line on potty training. He thrived off of the cheers of his brother and family. He walks around in his Avengers underwear so proudly and I am so proud its hard not to cry at times. (Because potty training for Ev wasn't like it was for a healthy child...he endured painful sores which brought about the timing for being potty trained. And, in spite of the pain and obstacles, he just kept trying.)

Both of our boys are showing how beautiful they are...hugging, holding hands and encouraging each other. They did this on their own yesterday on our way out of clinic, and its not the first time...

Jeff went completely bald and took of the beard too. We both gave Ev the decision and dad had to take it all off. I got to keep my hair.

An update

A lot has happened in the last two weeks. Ev is continually loosing his hair, we have experienced how much insurance sucks and the importance of good programs out there to help families with sick kids, Ev has had two spinal taps and we made it through extremely bad weather. There's more, but lets not make the story too long.

I have been waiting for Ev's hair to fall out for more than 6 months. I expected to fall apart and become slightly tormented seeing his hair fall out into my hand...stroking his head for my comfort or his and being so very aware of the sickness in his body.

It turned out no different than any other element to his illness. You have a moment of being mad that he has to go through it, sad that sickness invaded a body that was once healthy and without scars and then you accept that it's our reality. This process happens much faster and easier now. We do life differently, but it's no longer different for us.

For those who don't know, Ben loves his hair long. Even when Jeff has cut his own hair short, Ben will ask him to grow it out. But, when we explained to Ben that we were cutting our hair to support and show our love for Ev, he amazed me. Ben hasn't complained once...he's only asked if it will grow back.

When Ev's port is no longer accessed, it's time to wrestle with dad and brother.

The Indianapolis area was completely snowed in and incapable of functioning for at least two days. We had to delay an appointment because there was no way to get to the hospital. We ended up going the following day, dodging potholes made from ice and traveling about 20mph. Even if we weren't bumper to bumper with other cars, we wouldn't have gone any faster. But, we eventually made it to the hospital and we made it through the storm with heat and no frozen pipes. Whew!

Ev has two more weeks, 6 more visits to clinic and no more spinal taps. I'm so glad as the end of this phase approaches, which helps because Ev is so tired and mad. I always tell him that its okay to be mad and that I don't like it either, but translating the fact that he still has to do it can be tricky. Fortunately, he doesn't let anything keep him down or mad. He goes back to playing quickly.

There are many times that I (and at times, two others) have to hold him down or restrain him in some way. It absolutely sucks each time, but I am as determined as he is. His focus is to end the current happening and my eyes are set on ending cancer. I suppose we just have different plans of how to get it done.

This was our latest visit to clinic. Getting chemo while playing and waiting for a spinal tap.

The New Year

When Ev was first diagnosed, I really wanted to turn back time and go to the days when he was healthy. Even the days that we ignorantly thought he was healthy. We were all forced to walk a path that we didn't choose and I kicked and screamed for a long time in many ways as I put one foot in front of the other.

Due to the most recent holiday, I have thought a lot about the past year. It started normal, though Jeff and I had been sick for most of December and January. Once we were into February, things started to feel a bit off to me in the way Ev behaved (though I was never able to identified it and just acknowledged that I was an over concerned mother, which was true). Sometime in February we got a puppy...a BIG mistake on my part to think that I, or my family, was ready for that. By April, the pup had another home and we hung up the towel on having a home with animals of any sort (at least for a very long time).

I won't continue to tell you all of the trivial details, these annoyances and concerns at the first of our year are no biggie in the big picture of things...though at the time we were challenged by them. It was June 4, 2013 that halted our world. The day we found out Ev had Leukemia and the day we knew Jeff would be laid off. I immediately thought of Job in the bible and was anticipating what was going to happen next. Thankfully, God's love and healing began before we noticed.

And, I am like Job, more than I thought...but not because of the suffering as I had predicted so dramatically in mind at the beginning. I am like him because I have always loved God and when I felt God was nowhere to be found I yelled, called Him names and questioned everything about Him. I wasn't scared of God's "wrath" against me for what I was saying or feeling, I was scared of loosing Him. However, my relationship and understanding of God is now stronger and, again, that relates me to Job.

So, 2013 was a bust, it was the worst year of my life. But it also impacted me and my family in a way that will enable us to live more fully and to never, ever give up.

What does 2014 have in store for us? Well, I have never been more excited to bring in the New Year as I was a few nights ago. Stepping into 2014 brings more hope and a cancer free child. Let's hope and pray that remains a reality for this year and in years to come.

Happy New Year!