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.

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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.

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.

______________________

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)!

Returning to clinic...a month later

I was anxious in a bad way about our return to Riley last Tuesday. We had been able to stay home for an entire month and I didn’t know how Ev would handle going back. In times previous when we had a lull in visits and then returned it was harder for him. He was more resistant to the situation. So, I prayed a lot as the day approached.

One thing life has taught me is that I am a strong and focused woman, but those qualities have limits to them. It takes a lot to care for a sick child. I knew that I would fall short, I used our month at home to live outside of his illness more than I had been able to previously. It was important for me to acknowledge my need for God’s presence, strength and guidance. (I can’t think of anything that’s not cliché to say in this moment, so don’t let my use of it deter its trueness).

Ev told me he didn’t want “wrinkly eyes”. When he gets a spinal tap he is sedated and refers to that as “wrinkly eyes”. I told him exactly what was happening, as it was happening (he gets other meds and he doesn’t know when the sleepy medicine is coming and so he was nervous). It was the most peaceful spinal tap he has ever had. He was listening to me rather than screaming and flailing…his doctor and I kept looking at each other in astonishment.  There was even a med student in the room and we had prepared her for how unnerved he gets, except it didn’t happen. And, when he woke after the sedation wore off, he told me he didn’t get “wrinkly eyes” (even though everything was done the exact same as all the times before).

For those who don’t believe in God this will seem obtuse, but for those who do and have experienced the peace and joy that comes…this will hit home. I was almost in tears at the blessing of Ev, a toddler, having a moment of peace and stillness in a moment that has caused him severe anxiety the ten or more times it has already been done. The day went smoothly and we were out of the hospital a little after noon. And, it was great that it happened to me a warmer day, so Ev got to play with brother outside when we got home. A day I had dreaded became a day of joy.

God was there. He has been here through all this…even when I wanted to write Him off in my anger and confusion. It is joy to know that God is there for me and it leaves me speechless when I see His hand on my children.