Is that a bluebird on my shoulder?

We made it to Vermont! It was a great trip and none of us wanted to leave. Ev wanted to turn right back around and Ben cried himself to sleep for a few nights after getting back. It sounds sad as I write it, but it wasn't. It was wonderful to share a place Jeff and I love with our boys and then for them to now share that joy with us.

A few days before we headed east Ev was diagnosed with asthma (likely to be childhood asthma and not last for his entire life). I accepted the news with partial joy because I knew something else was going on, and now we had an answer. When you are fighting cancer, almost all other health issues point right back (whether the illness itself or side effects from medicines or procedures). Asthma is a completely separate issue. I actually enjoyed dealing with a lesser health concern...the meds are less and more simplistic, our time in the office was faster, and there were no pokes, dizziness, nausea, etc. Asthma feels like a skinned knee.

In preparation for our trip we had a list of notable hospitals that we could go to if needed and we, of course, had our own little pharmacy in our car. I was beyond overjoyed to have made such a trip without any medical drama. What a blessing!

My prayer is always that Ev would get what is needed no matter how messy and crazy that looks. I prayed with even more fervor on this before we left. And my prayer was answered, again. It's never how I think, but always in a way that humbles and blesses me and my family in ways that bring tears to my eyes and leaves me speechless.

Now, we are on our 4th day of school. Ben is at a new school and loving it while Ev is at home doing preschool with me.

As I think about the happenings of this year I don't have that hidden layer of anxious doom beneath the surface. I genuinely feel positive through to my core. It's as if I am walking Ben to school with a bluebird on my shoulder...for the moment I have found myself in a Disney movie.

Two down, one to go

We are taking time off for good behavior...in about a week we are heading to Vermont. Fortunately, Ev has been doing well while in maintenance and with another year still to go we could all use the chaotic fun of a road trip. We are all so excited to go...Ben is certain he will remember places (he was 18mo. when we left), Ev wanted to leave a week ago, Jeff has planned every meal and I am in tears at the thought of this really happening. 

So, when we went to clinic today and Ev's ANC was 1080, I sighed in relief. Sure, that's still low, but it's good enough for us to go.

It's funny, a 15 hour road trip is not something parents with young kids usually sign up for, but compared to these past two years it sounds blissful. It will definitely be therapietic for all of us and I am eager to see how it all unfolds...thankful to be hitting the road with my loves in tow. 

And in two days another year of treatment will be done. Two down and one to go.

"June 4" still weighs heavy on the heart, but it's not all pain and uncertainty anymore. Now "June 4" is more of a mile marker and soon it will be the finish line. 

...I think we can handle a road trip.

The hideout

Ev has a hideout in our living room. Between the couch and chair is a little nook that he escapes to everyday. He will watch YouTube for kids, PBS kids, play games, look at books and play with toys...the typical hideout stuff for the modern child.

When I think about it we have all needed our own hideouts in this process. And those hideouts tend to change, but we always find new ones. 

About a week ago I really fell apart. I think I lost my hideout...due to circumstance and my disregard for its necessity in my life. After almost an entire day of tears, frustration and pleading and yelling at God (yet, again)...I fell to the floor sobbing. Ev was having a very similar day. But, Ev came to me and we hugged. I told him what I've always wanted to say since this battle began. I told him how I was sad that he was sick and for what he has to go through. 

I can't share everything I'd like to since he's only 4 years old, but it felt so good to be able to say something. It was an impossible conversation at 2 years old. 

He cried a bit more hearing my heart's confession. We hugged and cried together on the floor of my closet. It felt raw like a fresh open wound and it felt so very healing at the same time.

That evening when life returned to a more normal state, Ev randomly looked at me and said, when I'm sad, you're sad and when you're sad, I'm sad. He said, when we are sad we hug and hugs mean I love you. (Yes!)

I take comfort in seeing Ev tucked away in his hideout as I confess to you all. And I take comfort that God responds to my tantrums every time and reminds me of His love for me and how that love can morf into anything that is needed. And continually our needs are met.

My hideouts aren't always known to me in the moment, but slowly I am catching on...aware of what some have looked like in the past 2 years. I don't have a little nook in the corner because God knows what Ev needs and what I need are not identical. My nooks, my hideouts, are often found among friends, family, moments with my husband and from an assortment of books.

God is loving and renewing us. And despite my short comings, God can see a heart that longs for Him. A longing that continues to grow.

Hallelujah, but the roof's caving in

Ev has had a cough for months, high temps off and on, some ear aches and none of them led us back to the hospital, unscheduled. It appeared as though we had evaded the flu season. But, then we got caught. A week to the day, after our last monthly visit, we found ourselves in the ER due to a continued high temp and Ev feeling horrible. (It wasn't an emergency, but clinic wasn't open yet).

So, Ev got a break from chemo meds for about a week as his body needed a break to regain from being attacked over and over from this cold and that. When we hear the word break we think that its a chance to kick back and relax, but really it just changes the plan of attack. He had become neutropenic, which brings on adaptations of a different sort. And, now a good portion of his body is covered in an itchy rash.

But, anyhow, here we are...his counts are back up just enough to continue with chemo meds.

And we go back in a week for our scheduled monthly visit. Blah! Five visits in a months time...we liked and had gotten used to the space between visits. But that's life...you can't always choose what to fight or when to fight, you just have to be ready.

The continual up and down makes me think of the song "A Woman Caught" by Penny and Sparrow. Jeff and I got to see the band last night and the funny thing is...the song is about a prostitute. I am not referring to that part. What I think about are the lyrics "hallelujah, but the roof's caving in." 

This journey has felt like that the whole way through. It's a smile through tears, it's wanting to break something while wanting to bear hug someone, it's feeling apathetic and then overwhelmed by emotion, ...it's hallelujah when the roof caves in.

Hallelujah:

Ev woke up at 1:30am with a high temp and this is what became of it...sleepy love. We all found ourselves in the living room awaiting what would happen next. This is my Hallelujah...the truth of love revealed. My boys already know the many facets of love. Their lesson on love, sacrifice and life and death came early, but they are blooming that much sooner...sharing love and compassion.

but the roof's caving in:

This is in the ER about 6 hours after the photo above. You can tell he wasn't feeling well, but he's watching cartoons and you can still see some chocolate on his lip. This is my roof caving in (...because I can't and would never capture the torment that can occur between some of the photos I share, but this one in particular was very rough). One of his nurses actually apologized to me last week for having to watch and hold Ev down...you can picture this fighter, literally fighting, right?!...with tears in his eyes! It isn't for her to apologize for, but it was so helpful to me that someone could see and realize how hard that part is and as a mother too. Jeff and Ben have seen it too...it's horrible for Ev and therefore me, and the rest of his sleepy love buddies.) 

A new day

We have been going to Riley for years (actually, 1 yr and 9 mo.s) ...but it feels like years. We see familar faces and new ones each visit. We've seen nurses pregnant and now pics of their wee ones taking first steps. Time is passing and Ev is becoming a boy in the process.

Five days before our next visit, Ev asked when we would be visiting Riley again. I was surprised he asked because he never has. It always seemed as if he liked not knowing. But, now he wants to know, so I told him. And inside I was cringing at the thought of the added anxiety that would come because of it (for him...and me). But, no anxieties came. Three days out he asked again and he was still ok. Then he asked the day before, and no anxiety...just a testament as to why he doesn't like to go. 

Ev was more aware of this visit before and while in clinic, and it didn't seem to add any anxiety. It was a good visit. He actually helped access his stuffed animal snake, which was so cleverly named "Snake-Snake." 

So, as he was receiving his chemo, the snake was too. 

The beautiful and painful part was that he didn't want to access Snake-Snake's port at first because he knew it hurt. But, we urged him to give it a go and he seemed to find it helpful. 

I don't know if Ev saw the snake as sharing in his pain or if it was helpful to be the one giving the poke rather than the one receiving it. Either or both, it was a good thing. And a bond was made for Ev with his new stuffed animal. Snake-Snake did not leave his side that day and I don't think it will any time soon.

My big boy is learning about his sickness in a new way. He's no longer just putting up with it and giving into the distractions we throw at him, he is beginning to really see and understand it.

Raising money and awareness

I have a few points of interest to share...

"The Leukemia & Lymphoma Society (LLS) is a proud supporter of Ken Burns Presents CANCER: THE EMPEROR OF ALL MALADIES, a film by Barak Goodman. Based on Siddhartha Mukherjee’s 2010 Pulitzer Prize‐winning book, “The Emperor of All Maladies: A Biography of Cancer,” it’s a vivid account of cancer's grim past and the promising future of cures. LLS-funded research has contributed to breakthroughs that have helped tame some of the most lethal blood cancers, and helped get to this moment of extraordinary progress in cancer research and treatment.

The three‐part, six‐hour documentary series will air on PBS on March 30, 31, and April 1st at 9PM local time. Watch the film. Witness the impact LLS has had on the fight against cancer. We all have more work to do. Join us."

To see the trailer go to:

http://www.lls.org/emperor/

And...

I will be running with Moms in Training again for a race in April...a race in which I will be fundraising for The Leukemia & Lymphoma Society. I will share the links and details as I get them. 

And...

sharing some love with us and others...

"Less than one month, guys! Let's get the word out and raise some money for Pediatric Cancer Research! I'm going to "Brave the Shave" in honor of Everett - so donate what you can, every little bit helps!" -Brianne

Help the cause, visit:

https://www.stbaldricks.org/participants/mypage/740843/2015

Finding happiness

I wasn't going to accept another sad day at clinic, so I asked Ev before we went how we could bring some happiness into our day. He wanted to go to a store and pick out a toy, so we did. Mr. Potato Head Batman...the least intimidating Batman he owns.

Once we got to Riley he got more toys in honor of his 4th birthday! ...some coloring books and a much stronger Batman, to which he refers to as Ghost Batman (he loves Halloween and Batman was dressed in all white so naturally this makes sense).

I wish I could say that the entirety of the visit was without any discomfort, but they never are...seeing him poked with a needle so large and having to hold him down...with the help of other nurses, it hurts me to see and do every time (a moment in which I must detach from my emotions). I wish I knew what it felt like to have that needle pierce my skin...I wish I could understand the realities of all his physical and emotional pain. I wish it was me instead of him. 

But, it was a good visit. He only had one chemo med and the visit was short. And he was a trooper!

I am his chameleon...I see him strong and I am strong, I see him in pain and I am in pain. I soaked up the strength and joy he managed to show that visit. Thank God not everyday is a bad one...and thank God he can be my chameleon too. 

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.