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.

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!