Twist

I thought my days of posting from the make-shift couch-bed in the hospital were over...but, here we are again. And, Ev thought his days of getting accessed were over. Not so fast.

Everett was admitted this past Monday night because he had a high fever and was neutropenic. His ANC went down to 150.

He has been a week off of chemo meds, conquered two months of kindergarten and was scheduled to get his port out this Friday. It felt like we were in the clear. It seemed the Leukemia chapter was done and the next was beginning.

But, I guess this is the twist at the end of any good story. You think you know where you're headed and then BAM! a twist before the end and then, applause.

In the midst of getting antibiotics and more blood tests, Ev has experienced what it means to be inpatient. He has no memories of staying on level 5. However, I was immediately flooded with both good and bad memories as soon as those huge doors swung open to invite us in.

So, I am sharing with him various stories that come to mind. The bad memories I will keep to myself for now but the good ones offer some pleasant moments in this twist in our story.

Yesterday, we started drawing and writing on the windows and doors in our room and he says, "guys, I don't think we're supposed to do that." HA! We've done that a million times before. We also played balloon bop, where he bops me in the head with his balloons...not my favorite game, but for him, it's a hilarious "new" game.

One of the upsides to this time is that we aren't having to balance chemo meds with everything else he needs...we aren't attacking cells, we are only building them up and that takes away a lot of concern.

The blood cultures show a viral infection and not anything more severe and we are definitely thankful for that. Now we are waiting for the temperatures to go away and for his ANC to show signs of increase. And, last night was his first night with no fever!

40 days!!!

It's been a year since I last posted... and it's been a good break for me. I was tired, and I'm still tired, but it's been nice to step away.

At times, it has felt like the carnival ride from Sandlot...you want to get off, you need to get off, but you have to wait until its over. I would say I have metaphorically puked several times and now I am just waiting for the ride to come to a complete stop.

Now that both boys are in school I have people asking me what I am doing with my time. A valid question, but one that I don't always answer truthfully (because I've realized through this that what I see as good and part of the battle others see as sad). It's the idea of being Debbie Downer from the Saturday Night Live skits that I try to avoid. But, I'll be honest here...I cry.

Everyday the boys have had school I cry and it's healing. Crying is good, I like to cry because it is necessary and not everyone accepts sharing in sorrow or tears. Usually what inspires the tears are replaying the past 3 years in my mind and being able to see almost the whole picture or watching the boys joyfully run into the school doors together.

The boys couldn't be more different...filling out school forms for Ben is so simple and for Ev I needed more space than what was provided and have talked to the school nurse for 40+ minutes on a care plan. The ying and yang of these boys is insane. Yet they are such good friends.

Everett is in kindergarten and Ben is in second grade. This morning when I dropped them off we counted how many days are left of treatment. There's only 40 days left of chemo meds! (This realization was the source of my tears today, or at least for the morning.)

Tomorrow is Ev's last spinal tap. Then he will have one more clinic visit in September...oral chemo meds stop October 1 and by Halloween his port will be out.

And, he asked if he could be a zombie this morning...except he meant for real and not just for dress up. The kid thinks it's cool to die and come back to life. WOW! So, spiritual speaking, I completely agree. And, then in some ways he already is a zombie...he came close to death, but here he is alive and well...making us laugh and love. I love how kids think!

Soon we will be on a path that will move us all forward and no longer will we sit and wait on what the moment or day will bring. This is exciting for all of us!

Everett has no idea what it's like to be healthy and I am overwhelmed in a great way to watch him slowly heal and surprise himself as he tries new things. I thought that so much of our joy was taken from us because of cancer, but I know now that we are lucky, fortunate and blessed to have faced such darkness only to see the light so much brighter and clearer. Some of the joys I dreamt of didn't happen and I honestly have mourned them. But, now the joys we have are so much richer. I would be lying if I wasn't grateful for that.

...And, thank you to all of you who have continued to check in with us, send us messages or kept us in your prayers. We've needed every bit of all of you to make it through. I appreciate what every single person has done in their various roles...it all blesses and it is all important.

June 2013

July 2016

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.