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)

Cancer...I hate you

I was starting to feel invincible. We haven't been admitted to the hospital for 6 months and there have been no surprise visits to the clinic. And then this morning, we woke up and Ev was hot, clammy and listless. As I sat on the kitchen floor with him (not sure how we ended up there), I was reminded more fully the battle we are fighting. And, reminded of how he looked when we first took him to Riley.

Now that it has been almost a year, we've had so many days that have been more than just tolerable they've been enjoyable. Since Christmas life has not had any emergencies, those moments when you would run out of your house with your baby in arms to get him/her whats needed...all the while not noticing that you aren't dressed or forgot to put on shoes. Moments when friends have to remind you to eat or shower.

There are always ups and downs in life, but the ups and downs of cancer attack the soul.

But, regardless as to how Ev woke up this morning, he is currently playing in the tub as if none of it happened. He seems to be ok and he is singing "Let it Go" at the top of his lungs. And, again my heart bleeds...but for the joy rather than the onslaught of pain.

Month 3 of Maintenance

Ev has just finished his third month of maintenance. It has gone smoothly and no backlash from the small risks we are slowly starting to take. And, we got to the bottom of "wrinkly eyes."

Awhile back I posted about how Ev will get wrinkly eyes when he is sedated for a spinal tap. Well, he doesn't like spinals (who does) and getting wrinkly eyes freaked him out. So, after talking to one of the nurses we determined that the doc sedating him needs to balance the meds differently. Either balance the med or sedate him quickly.

This past visit he was sedated quick and it freaked me out. I wasn't ready for him to go limp in my arms in 5 seconds. My heart dropped, but I can see the vitals just like the two docs and two nurses in the room with us. So, all was well, but what the hell?! It's unnerving to hold your child while they are being sedated anyway and I just didn't know going quick was an option. Ev said he had no wrinkly eyes this time, so that was great and now we have a better idea of how to keep "wrinkly eyes" away for good.

Ev continues to relax more and more. He knows now that he doesn't have to be anxious or fearful the whole time and that even though the nurses might cause him pain or discomfort that they are caring people. He'll ask me what the nurses are there for and then act accordingly.

The summer promises to be a good one...we have plans underway with Make A Wish (http://wish.org/) and Ev has done a 180 from where he was almost a year ago.

Month 2 of maintenance...check

Today we signed Ben up for kindergarten. A big step for him (and me). After all the formalities, we went outside to play. As the boys ran off to play on the playground I had so many thoughts and feelings flood my mind and heart. I was so excited for Ben and this big first step he was about to take and then I realized that Ev was playing on a playground. The last time he was on a playground was when we had to hold him up and help him out. Due to the time of year he was born and then getting sick last spring, he didn't know what he had been missing. It was such joy to see the two of them take off yelling at each other with such excitement.

Ev is signed up for preschool in the fall. My hope is that he will be able to fully be a part of it. We have no way of knowing whether his immune system will hold up well enough or what might get passed around at school. He is not up to date on immunizations either, as his body cannot take it until a year after treatment is done. So, we are taking a shot in the dark because it's what he wants and we have to start taking some risks.

Maintenance is not as cut and dry as the treatment phases prior. Before the lines were pretty clear and there wasn't any wiggle room. We did what we had to do and everyone made sacrifices. Now is the time that we start deciding how and where we will take our risks as we reenter a world that we temporarily left behind.

Ev continues to do well. I am still very much aware and thankful for every moment of it. And our return to clinic this past month was the shortest on record. He only needed one chemo med, an update on his counts and more prescriptions. Ev's ANC was 2000, the highest it has been since sometime prior to being diagnosed. This elevated ANC could be partially due to the fact that the boy just keeps on growing like a weed and there hadn't been an increase in his meds. So, this time an increase was given and that might bring him down a bit. The comfort zone for the docs is an ANC between 500-1500 for the maintenance phase.

In the months ahead we are starting to fill the calendar again with activities and outings. And, then I am  arbitrarily filling the calendar in my mind with trips to the park, camping, hiking and all the random outdoor fun to be had.

Cheers to health and the greatly anticipated warmer months (especially in the Mid-west)!