Love gets us through

A couple weeks ago, Ev came running to me with tears in his eyes. He had hit his head. It was no big deal...a typical hit kids take repeatedly. He begged for a kiss and quickly. 

I kissed his head and he looked at me and said, it still hurts! I said, I can't take the pain away, all I can do is give you some love.

After I said this two thoughts came to mind...1) how God has given me that response multiple times (the pain can't be dismissed with the wave of a wand, but love can decrease the pain and get us through and He met my pain is so many different ways) and 2) how Ev has made it through so much physical and emotional pain and is just now realizing my kisses hold no magic...how did that happen?

This speaks to the power of love. And how the lack of love in ones life is the most tragic story.

I'm not sure Ev understood my reply to him, but he seemed to accept it and maybe in his subconscious realizes it did help him through. 

A sad day

Last clinic visit was a sad one. No cancer patient likes their clinic visits, but some are easier than others. This one can be labeled as sad.

There have been a handful of times that we have gone in and Ev sits in his stroller as if he is daydreaming or about to fall asleep. These days are usually the ones that he has to go in without having had breakfast...and only allowed clear liquids three hours before the procedure (spinal tap), which usually turns into four. So, when he did the same thing on our latest visit I didn't think too much of it. But, then he told me he was sad.

Within the last month or so Ev has had a realization of what is going on and what this "sickness" means. He has asked me a few times when he can have blueberries again and I have told him when the sickness is gone and that we are half way there. To which he commonly replied, ok. And then proceeded to play. But, he's realizing perhaps that halfway done might be longer than he hoped.

Ev has always just put up with his treatment. He'd take whatever hit he had to take wether on his own or with us by his side and then move on. It appears that time has come to an end.

So while we were at clinic he looked at me for reassurance and certainty. And, we all get it. Why does he have to have cancer? Why does cancer hurt? Why do I have to skip breakfast and come to a hospital for pokes when I feel fine?

He fought more over getting accessed too, verbally and physically. I told him none of us want him to get poked (I know I would take all the pokes for him), but we have to get the sickness out of his body. I listed family members who didn't want him to be in pain and he began to cry. At the time, I felt like he got it, but he might have just realized his certain doom of pokes ahead.

He was sad for most of that day. I was sad for most of that day too.

Ev will now tell me that he doesn't want to be sick anymore, and that he wants to do what brother does. And so begins another challenge in our battle against cancer. In the midst of our battle the baby is becoming a boy.

Still kickin'

It sure has been awhile since I last wrote. Close to 4 months since I last gave any descriptive updates. When asked in person how we are doing, I often try to limit myself as I could go on forever. And, honestly, most people want the cliff notes not the novel or even the novella. So, it is here that I allow myself to go further.

The last 4 months have not been too boring to write about, it was much to the contrary, but instead of it being about Everett's battle with Leukemia it was our battle against unfortunate events with our home.

I won't go on with all the details, but it has been a very tiring process and it has lead to a need to sell our home and go through all of our belongs (for a second time, if anyone is counting). For those who don't know, we have had issues with mold before and had to throw out or clean a great deal...and that was just the two of us. This time we had an extra set of things to go through. The victory in this...belongs don't add up to much for me or Jeff. There is freedom in that.

We battled, prayed and talked with others as Jeff and I tried to make the right decision for our family. And, in the end, it became simple. Either we devote time and money to my dream (money pit) home or we devote time and money to our family (and others). The peeps won, hands down. We wanted to take hold of this home and fix it up ourselves, but life changed and we needed to change too. We all have to maintain our focus on what really matters or we will find ourselves moving in hopeless circles.

So, we are now nearing the closing date for our home and we are in an apartment for the moment. The next move is uncertain, but we will figure it out.

Ev continues to do well. He still gets sick every other week or so and continues to feel tired at random, but on the whole he is doing well and having fun. He is growing like a weed and weighs 47 lbs., which is quite a workout (lets just say I could sell tickets for my own gun show). He barely fits in his stroller, which I try to use as much as possible...his feet drag and practically pull him out of his seat. That's probably why he wants to be buckled in all the time (or the fact that an "X" appears on his chest when buckled in...X-Men).

And, we are now officially at the half way mark in his treatment. Only 1 1/2 years to go.

Merry Xmas all! And, thanks for checking in with us!

  

As tough as can be

More often than not we, as a family and individually are commended for our strength. And, I guarantee we all appreciate the support and kind words. Thank you. 

But, I cannot let that be the end of the story. So, let me set the record straight.

Strength does not mean that we make all the right decisions. It doesn't mean that we face every challenge with grace, dignity and peace. It does not mean that we consistently "teach" cancer a lesson, sometimes cancer reminds us of its control. 

Strength means falling apart, but knowing that you're gonna stand back up...maybe in an hour, maybe in a couple days. Strength is not found alone, but with the support and love of others (some who have walked so many steps by our sides and others we randomly come across while living life). 

Everett was a good example of this real strength yesterday at clinic. He has been doing amazing at allowing the nurses to access his port (an uncomfortable process in which a good sized needle is poked into a spongy circle under his skin that then delivers chemo and other meds throughout his body. It's also where they take blood samples). 

So, Everett has been sitting in a chair all by himself the past 2 or 3 visits to get accessed. This is very commendable for a 3 year old to be able to do. It wasn't without squirms and telling us that he didn't want to do it, but he did it and he didn't need us to hold him (or hold him down, ugh). 

But, yesterday, we did have to hold him down. He just didn't want to do it on any level. And, after he was accessed, he was sad. He showed his sorrow and he showed his need and desire for love.

But, he went on...he had a spinal tap to get through. That part was easier for him and he made a comment that his doc dresses up as a banana to give him meds. 

He recouped from the sadness that a challenge such as this brings and with some love, he kept going and he laughed when he could. That is strength.

_________________________________

We are often mislead, not because we don't seek the truth, but because the truth isn't shared. That helps no one. I want to learn from others and I want others to learn from us. There are so many great byproducts when we open up and share.

Another month gone

Our last clinic visit was July 29. It went well, his ANC was within the appropriate range and all the blood and liver results were good. We went as a complete family and it was all in all a pretty good day. Ev was sick that morning and we still weren't sure why. His doc noticed from his blood work that allergies must be bothering him, so we left thinking and hoping that adding allergy medicine to his daily dose of meds would help him feel less tired and that he would not wake up ill. 

Though I think the allergy medicine helped, it did not take the extra sick days away. I guess we have to assume that he is feeling more side effects from the chemo meds and that this is one of them. Thank God for Zofran and other drugs that off set.

The day after the clinic visit was horrible. Ev felt sick and was inconsolable. I was told by someone who had recently gone through chemo herself that she had days that all she wanted was to be held, yet couldn't stand to be touched. It creaks my heart to hear a grown woman say that and then to think that a child still learning how to deal with emotions is probably feeling the same way.

So, for close to a week life really sucked. It's not that there are no glimpses of joy or that laughter is never heard within our walls...but the challenges out weigh all else. The steroid he is on had very little effect on him at first, then over time, it has started to change his mood. Everett has "roid rage". I think the last time we consistently dealt with that was around christmas time. 

Usually, the bad moods and bad days come and go, but this drug had the upper hand this past round. We will see what comes in a couple weeks (coffee and beer for me...a padded room and plenty of mac and cheese for Ev).

I find that as time goes on, I am more hopeful and proud of how far we've come through this without as many dents and scratches that we could have had. I mean this metaphorically and literally. 

In a couple months we will be close to being half way though his treatment and that's a great feeling. 

Why would I ever run?

I am pretty sure that I won't say "never" again. It seems that every time I say it I end up doing whatever I was adverse to, or even though it might be out of my control...it happens anyway. So what is it this time? Running.

I joined Team in Training (TNT, www.teamintraining.org) through the Leukemia and Lymphoma Society (www.lls.org) and starting in August I will begin to train. I can sign up for a 3 or 5 mile run (the longest distance promises to be more scenic!?). Though I won't raise funds for every run or walk that I participate in, I am for this one.

Please visit my page and donate if you can. I know there are a million good causes to put money towards, so if you don't have one or your pockets are deep, pick this one...

Click here to help!

I also welcome any running tips...
Thanks!

No preschool this year

My plan was to introduce Ev to the preschool world this fall, but after signing him up and letting the whole thing soak in...well, I can't do it. I just can't compromise the integrity of his treatment because I want a better story for him. "I" want Ev to follow through with the plans I had for him and I know he would love preschool, but to what avail? So, I plan to keep him home while Ben goes off to kindergarten and see what the year brings.

Our clinic visit and talk with the doc last Tuesday was inconclusive as to why Ev gets sick every other Tuesday. But, they checked his liver to make sure there wasn't too much toxicity there. The levels were elevated from the last time he was checked, but not enough to stop or reduce any chemo. Also, his counts were high again (ANC 6000s). His counts should not be this high during the maintenance phase, and it hasn't been during any phase we've gone through thus far. So, the dosage of his oral chemo meds were increased. Great! (total sarcasm). A.K.A....toxicity levels were up when he was on a lower dosage, but we have to up the dosages in order to bring done his ANC.

To me, this is a sign of welcoming in the craziness that for a moment we were without. There is a reason people say "fighting cancer" or "battling cancer"...its common knowledge its not a one and done deal (to all of our dismay).

On a high note...Ev was "scheduled" to wake up sick this morning and he didn't. I'm ok with being clueless for now...when it means he is doing better.