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.

An update of sorts

Tomorrow we go to Riley for our 5th visit in the maintenance phase. It will be quick, as Ev doesn't have a spinal tap and the chemo he is getting is a small amount and can be given in about 15 minutes.

Last visit his ANC was in the 6,000s due to a possible infection in his body (or the chemo drug dosage needs to go up). Either way, we will find out tomorrow. The glitch in the system is that Ev has woken up feeling sick off and on in the past two months or so. Because it's not consistent its hard to tell if it's a random bug or a psychological thing. (It seems unlikely that it has to do with the meds he is taking at home.) It usually happens Tuesday mornings...he wakes up nauseous and lethargic, pukes for a bit and then slowly transitions into his happy self by the end of the day. Though I am not alarmed by this, I  look forward to figuring out how to end it.

We have had a busy June with the treehouse being built, camping with the grandparents and the Make A Wish party.

The party was so much fun and we were all exhausted from it. I've never been a part of such an amazing kid party. Dinner, fireman truck training 101, a police escort, a bat mobile, cake and plenty of play time with neighbors, friends and family.

It's been a fun month and I am so glad for it, no matter if it takes a bit to replenish.

Treehouse time!

I think it’s foolish to wish away any day, even though I have done it. But, none of that happened this past week. I looked at the calendar and realized that for the past seven days not one number had the notorious line through it. That is the sign of a good week.

Ev’s wish granting began June 11 and it has been an amazingly fun process.  The Treehouse Guys www.treehouses.org are uniquely talented and so much fun to be around. They brought their expertise and their vibrant lives to share with us. They are creating a magical world in our own backyard…a place where we will all share many laughs, conversations and the silly and creative business of being a kid.

What joy for something to go beyond what we could have comprehended. Ev’s wish has extended from him and somehow felt like a granted wish for our entire family, our friends far away and those next door.

And now, 10 days later we have a treehouse. A treehouse that graciously invites us up into its branches…a place the boys want to live 24/7. Here is the story in photos…

Thank you Make A Wish wish.org, Steve Gray Renovations www.stevegrayrenovations.com and The Treehouse Guys www.treehouses.org for making this dream come true! You all have made such an impact on this chapter in our lives...bringing us more smiles and joy. 

Whew!

On June 3rd we went back to Riley for our monthly visit. Ev had another spinal tap (how many is that now?! I think I'm glad I haven't kept a tally) and Ben went with us. Ben has gone to clinic many times before, but not on the days of a spinal tap. The awesome nurses entertained him with cartoons in the adjoining room during the procedure. Once we were settled in the same room as Ben, he came over to see his brother. I had to take a picture.

Ben didn't have to wear a mask at this point, but continued wearing it so he could be Dr. Ben. I can't imagine how confused Ben might be on all of this. We talk about it and read about it, and he understands a great deal, but its complex and not simple. (By the way, Ev always sleeps off the sedation for about 30 minutes after the procedure). It was a simple and peaceful moment, and I loved seeing the concern and love from one brother to another.

The much dreaded June 4th came and went with no semblance of the darkness that we endured the year before. Jeff and I both were stuck in an anxious anticipation of the day...not because we believed that the day held bad fortune, but we couldn't stop our minds from replaying the first few days of Ev's fight against cancer. Once June 5 came, the torment of reliving painful moments was gone. Whew!

It's been a year...some words and photos

June 4, 2013 was when Ev was diagnosed...as the day approaches I find it difficult to write because all I do is feel. Fortunately, in April, as an attempt to work through my emotions of the upcoming mark, I wrote a blog post that I wasn't sure I would use. Here it is.

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As the year long fight against Leukemia approaches my mind keeps drifting towards the possibility of a battle lost. In the first few days and months, life was fragile and we felt it so intensely. We didn’t, nor are we loosing said battle, but in order to fight it’s helpful to know what’s possible. You have to know what you’re up against.

I look at Ev’s smile and cute little toes, I listen to his laugh and his version of Somewhere Over the Rainbow and I soak it in knowing that I was blessed to have him in my life and blessed that he’s still here.

My mind has often thought of how thankful I am to have known Ev. When he was diagnosed I didn’t know him yet. At 2 years old I knew the toys he liked, but with a talkative brother and mama, he barely spoke. With every day and month that passed in his treatment; Ev went from a boy of maybe two words to a boy that can lead a conversation.

Ben also remembers. He remembers a lot…such as when and where we all were when Ev was first said to have Leukemia. He remembers seeing his sad parents and sick brother…and he remembers being given a coloring book and crayons and then spilling his milk on a couch. He doesn’t think of this time as sorrowful, but as a matter of fact. In this year, he has become a caretaker for Ev and his best friend. I’ve always wanted the boys to be friends and through this it has happened organically and quickly. 

Hitting the year mark makes me feel fragile and want to cry, but not because of any lack of hope. I think about what we have all gone through, how hard the battle has been for us, of all the friends and family that have reached out to us…of how something that can tear and break down only built us up. Cancer comes in and slays the biggest giant, but it didn’t slay us. We are surviving and we continue to thrive. 

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Below are a mix of photos from the last year. It shows more of the realities that we've faced and how much he has progressed and healed. At the very beginning of this I was very strict with my family and friends on sharing any photos of Ev, especially at the hospital. How can anyone understand or be urged to help if they are unaware? So, I wasn't ready then, but I am ready to share some now...

This was June 5 (or 6th), 2013 in ICU...

still wearing the clothes that he arrived in, on oxygen and having a blood transfusion

Another of many blood transfusions

(www.redcrossblood.org, www.indianablood.org...)

Craving A LOT of Mac 'N' Cheese

He started with a PICC line in his arm then he went to a port (shown above). 

Spidey playing in the playroom at the hospital

One of several clinic visits

Also at the clinic

Long days at the clinic

Resting as the sedation wears off after a spinal tap 

( I always want to wrap him up in my arms at this point, but that would be a bad idea)