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!

The prodigal son returns

Our prodigal son, Everett, returned to us yesterday. It took about 24 hours after stopping dexamethasone for him to be himself once again. When he is on this chemo he turns into quite the tyrant and his moods are all over the place. All of us missed our Big Easy...and we are excited to see him enjoying life rather than being at the mercy of it.

Our lives had become an after school special on why you should never take steroids. He had "roid rage" and it was making all of us stressed and weary.

Now, Ben has his brother to play with again and Ev is actually happy to be playing with him. They played for hours together this morning. It was like living a dream that I forgot was a possible reality.
I'm so glad that Ev will not be on that drug again in the foreseeable future.

We have 3 weeks and 3 days left of the delayed intensification phase and then we will enter into another realm that will change the pace of our lives again. Going to Riley once a month is hardly a believable thought for me. Last month we were there 7 days and prior to that we were living there for 10 days in a months time.

I am excited about the future, knowing that some of our hardest days are behind us. I packed up Christmas decorations today, the sun is shinning and I am ready for the New Year.

We did have a good Christmas. We were able to be at home and be with family...that was my goal and God willing, it happened. The boys enjoyed being little elves passing out presents and being snuck extra sweets. Yeah, I noticed those Snowmen Pez guys being refilled Nana. But, no worries, I too was one who snuck extra treats to them.

Christmas Eve...a prime example of Ev's mood swings. He refused to even look at me, he was mad that his picture was being taken (the real Ev would have made a silly face or danced for us). But that Captain America shield on his arm was not forced...he wore that for two days. Dexamethasone has nothing on Captain America!

This SpongeBob pillow is an example of many charitable donations given to Riley kids throughout the year. Toys seem to be so minor when faced with cancer, but I guarantee you they are not. 

A Christmas Miracle?!

This past Monday when I took Ev into clinic I was completely surprised when we got his counts back. His counts involve a litany of cells...white and red blood cells, hemoglobin, neutrophils, lymphocytes, monocytes and it goes on and on. Anyways, from these cells we get an absolute neutrophil count (ANC) and this tells us the strength of his immune system. His ANC was 4150! This is almost in a normal range. I stared at the number for awhile and then questioned the nurses (I had forgotten how to calculate the number, as I have relied on the strengths of those around me).

The number is accurate, of course. And, then it took me at least a day to process it. I am a rational person and this is not a rational situation. He was predicted to be close to 0 by Christmas Eve. And, if we were to look at how Ev responded last time with this mix of drugs, his counts came down. His counts actually went up from the week before while on meds that really wipe cells out. I am baffled.

One of our friends (who has recently beat breast cancer) said, "it's a Christmas miracle!"

So, maybe it is. We'll take it. I still have questions in the back of my mind, but Ev looks and feels good, so I am joyful. Eventually, the numbers will come back down (as they should), but this high count basically buys us time to be at home with friends and family for Christmas and gives a cushion in case he catches a bug.

As he runs down the hall I see his pink cheeks and I still think, "oh no, he has a fever!" But, in reality, he is the healthiest I have seen him in at least 7 months. Pink cheeks and no fever...it's beautiful!

Tomorrow we go back to Riley for more chemo shots. He has completed 6 out of 24 shots that will happen in December and January. He hates the shots, but the nurses are so kind and encouraging. The older kids that have them describe them as painful, so even though he can't tell us exactly, we know.

Thankfully, for Ev, it only takes a couple super hero band-aids and a handful of candy corn and he's back to being ok and playing. I marvel at how strong he is time after time, month after month.

So, Merry Christmas to us and Merry Christmas to all of you! We would not be as strong as we are without the love of all of you.

This Little Light of Mine

There are a handful of songs that we sing to Ev before bed. Mostly, Jeff and I will sing children's songs with an occasional song that we really like ourselves. One of the songs is "This Little Light of Mine." Ev will listen and enjoys my dynamics as I sing it, but Ben had a load of questions when I sang it to him the other night.

Often I change the words in stories or songs to fit what I, and we, as a family believe.  So, this particular song I changed to "don't let anyone blow it [the light] out". The original lyric I had learned is "don't let Satan blow it out". What is Satan to a kid? That is a loaded section for a kids song that I could talk for hours on. But, I wont do so now. (We try to avoid telling our kids about God in the Veggie Tales format, but some stories just can't be simplified...so they will wait).

So, Ben asks me what the song is about. Looking back, I think he wanted me to say someone's birthday. He probably thought the candle was on a cake and perhaps a little brother was trying to steal the thunder of blowing another's candle out.

I began telling him about a figurative light that can exist within a person that is used for good. Of course, yes, I lost him at the beginning. This was a conversation that fell flat, but someday it won't.

In thinking about this song, it almost brought me to tears. I can see a light in my boys that they are probable unaware of and that light gives me strength and joy like nothing else.

I feel that in dealing with Everett's cancer, Jeff and I are regaining a light that we lost. I am not even discussing a God vs. Satan issue as the song suggests, but a light being a passion and real desire for life.

I have feared death for most of my life, perhaps a little too much. But who I am, in conjunction with having a policeman as a father and seeing loved ones gone at a young age...I was always aware and feared it. Now, I don't.

I hope all of our years are many, but if I were to go tomorrow...I am at peace. The joy of this is that my life is becoming fuller than it has ever been. In the midst of our suffering and despair, I have found my light. I am a better person because of it, creating a better mother, wife and friend too.

What I have had no choice in facing is the truth that believing in God is not a promise that bad things will ignore us or that our life will never be without wants and perhaps some needs. God's promise is to be there with us through the pain and the suffering and to create something beautiful out of something He never wanted for us. It is wrong to think God is not on our side just because free will exists.

Delayed Intensification

Tomorrow Ev and I will go to Riley for an echo and more chemo. I'm so glad to be in this last intensive phase, but I am also a wreck as usual. As this day has approached my anxiety and stress levels have grown. I have to think constructively, rather than allow myself to break every dish and scare my children to death. I always want to break something, so I am starting to feel good that most of the house is intact and my children do not fear me. (Thankfully, I've found other ways to reduce stress. A blessing for me and my boys.)

Everett is doing well. He has rosy cheeks (without a fever) and is healing quickly after incurring all his bumps and bruises from being a super hero toddler. We've had a nice two-week break from being at the hospital and even though tomorrow will be a long day, it will be great to come back home when it's done.

If you were to see Ev right now, he seems perfectly healthy. This gives me such hope as my mind drifts toward the years ahead...wondering if there will ever be a relapse. I also find promise in his attitude and strength. He is such a fighter...internally and externally. We have to make sure that he doesn't use moves on his older brother. Ev can attack, and when he thinks he is Hulk or Captain America, look out!

So, for the next two months we will be in and out of Riley a lot. He will have at least 2 spinal taps, 24 shots, and at least 7 different chemo drugs. There will probably be a few delays sprinkled in there too.

I am so very grateful that our families are coming our way to see us this Christmas. We don't know how the holidays will shake out, but they will be here and that will make it merry for sure.