Home is where...

"Home is where the heart is" or "home is where you make it" as said in David Spade's Joe Dirt. Either way you might think of it, I have realized that they are both true. Though one is more endearing.

That said, our home will continue to be Riley until about July 5th. No one wants a hospital for a home, but it's not so bad. The only bit that really leaves me wanting is that Ben has to be somewhere else. Thankfully, our families continue to watch him, love on him and bring him by almost everyday. But, I really miss tucking him in at night.

Everett is doing great. These past few days our little guy has reemerged and we are excited to see it and laugh with him again. He has been coloring so much that the paper isn't enough for him and he eventually moves on to coloring his body. He always has liked coloring his own skin best.

A new style of bed head everyday.

Ev and Ben have had some time to hang out again.

My addiction is coffee, Everett's is mac and cheese.

Our new home

Yesterday, was a good day for Everett and was therefore a good day for us. I started to feel comfortable in a place I wanted to escape two days earlier. Living in a hospital is hardly ideal, but that is our new way of life for now and I am starting to learn it. We were fortunate to have had 10 days at home during induction (the first month of treatment).

The faces in the hallway are becoming familar. Ben has played with some patients/siblings in the playroom. A community is starting to form in a place that used to only bring anxiety, confusion, worry and a whole mess of other emotions that we want to move past.

I see some new faces to our floor (hematology/oncology) and have been able to give them pointers on which doors are for us and which are for staff. Everything seems like a confusing maze at first and then at some point, you get it.

Yesterday evening, I saw a mother holding her child in her lap on a bed being wheeled to a room on our floor. She had the look in her face that I'm sure I had when we first arrived. You can tell in the faces of those around you...who is trying to digest what they just learned and who has become familiar with the situation they are in. My heart sank when I saw the mother and child. Partly, remembering the way our hearts broke that night and how closely we came to loosing him, and then being so close to another's sorrow. Maybe I will see her today...I'll want to hug her, but that will really weird her out.

You would think that seeing a child go through what our child is going through would be easier for us because it's more familiar...but it's not. The good news, there are a lot of children being healed in this hospital. The bad news, we see a lot of those children or hear stories from their loved ones. Stories of a child being hit by a car, of a teenage boy giving us his chips in the infusion room after hearing our little one cry and beg for food, or watching a frustrated 5 year old girl cry and ask why while throwing her wig on the floor. It's a lot to bear. I will never forget these moments.

God never promised us an easy life, nor a life where we could have complete control. But, God is guiding through this time and helping me and others make it one day at a time. I am also getting quite a fire in my belly for my kid and others. I'm not one to sit still.

photos

Ev enjoying some time outside in his favorite shoes (about a week ago).

This was taken 1-2 months ago, but we added some fun to it.

Many thanks!

Everett's spirits are up today. It's easier to get him to play...to see his smile and hear his joyous laughter. (And this is before the blood transfusion, usually the energy surge comes after.)

Jeff and I are continually blessed by all of you reading this blog and those who's hearts are heavy with us. Thank you for all that you do. I know it probably feels like nothing or not enough, but it is. I think we all wish we could just wipe this illness away...the one thing we all want to do, but can't.

Thank you to all who care for our family...we are thankful and grateful beyond measure.

update 6/25/13

Everett is hanging in there...4 nights and 5 days later.

-The infection seems to have left his body, but he will continue to be on antibiotics for about 10 more days (this we can do at home).
-His fever is gone.
-He still has pains in his throat and stomach from sores he developed, which is very typical for chemo patients. This is the reason he still has needed morphine.
-He received platelets yesterday and will get red blood cells today.
-Not sure what his ANC number is today, but it continues to fluctuate. We want this to go up, so we can go home and Ev can get to playing again.

For those of you praying, please pray for Everett...from all that comes with the pains of cancer to his ability to still enjoy being a toddler. Thanks!

update 6/23/13

Good news...Everett's ANC is at 90 now!
Bad news...he is uncomfortable as we are still fighting the bacteria that invaded his body.
Good news...there's morphine for that.
Bad news...he has to be on morphine to be comfortable.
Good news...we all slept long last night (interrupted, but long).
Good news...Ev is going to get a cinnamon roll.

How long?

We will not be able to leave the hospital until...
1. Everett's ANC number goes up and shows that it is continuing to do so
2. His fever leaves and doesn't come back
3. His cultures come back negative (there is no virus or bacteria)

So, 48 hrs. in the hospital might now be the lucky or ideal scenario rather than the likely. Ev received some morphine not long ago and it's starting to work its magic. He is in need of some good sleep, last night was not an easy one.

Ev is awesome opossum

I complained about the stiff Lazy-Boy last night, and rightfully so. Fortunately, around midnight, Ev let me into bed with him. In the past I have been his bed buddy at the hospital, but for whatever reason last night he told me he wanted me to sit in the chair. So, I tried. I debate between allowing him the control of deciding and how much energy I will have the next day to help. It all worked out. After all, for a 2 year old independence and some control is important and he hasn't seen much of that in the past few weeks.

Everett has been so polite through this. Yes, the chemo drugs can make him moody. But, all things considered, everyone is surprised by his demeanor and I am proud. You know how it's said that character shines through in tough circumstances...is it possible to have such an awesome character at 2 years old!? 

He says "please", "thank you" and "no, thank you". The worst thing he has said is "no way" or "all done". I hope that he feels peace from God through this, as I do. I am certain that Willy Wonka, Spider-Man and Captain America have been a big help...along with chicken nuggets, chocolate milk, mac and cheese and "orange" chips.

Back at Riley

We're back at Riley for a few days. Everett had a 101.6 temp and his ANC bottomed out (so his immune system was out of commission). I have mixed emotions about being here. He needs to be here and we like it here, but I'm still mad that he has to be here. I'm mad that other kids have to be here too. What heart break to see what these kids have to fight through. I want to hug all of them and make it all go away.

Earlier today, there was a little boy, who already had lost his hair, standing outside of Ev's room with a smile on his face. The boy was not much more than 1 year old and was holding his own IV pole, more for support than anything else. I waved and attempted to talk to him, but he just wanted to watch us as his mom talked to the nurse. It was a moment of joy for me as I was still calming down from the worry of my own child.

Back in March, Everett woke up in the middle of the night having troubles breathing. Jeff was out of town, Ben was fast asleep and I heard this bizarre noise. Both my door and Ev's were shut, but I suppose because we live in a smaller home it was easier to hear. I've thanked God many times that I heard him that night. This wasn't his first time to struggle for breath, so we had a nebulizer and albuterol on hand. I gave him a treatment and brought him to my bed. He was fine the rest of the night. The next day we went to his pediatrician and she started him on a schedule of treatments to open up his pipes.

It was after this that I hit a brick wall and realized plainly that I cannot keep harm from my children. I have worked tirelessly to think above and beyond in order to protect them from both little to big injuries. I've always thought, if I can help...why not? And, I'm not saying that's wrong, but my prayers changed that night. I went from praying for circumstances to change to praying that God would help me to be there for them in dealing with the circumstances. So far, God has blessed me with this plea. I've also slept with our door open since then.

(Now for a 180)
For the past 17 days, I have wanted Ev's circumstance to change. I want out. Ev wants out. We all want out. I don't expect that feeling to change and that's ok. I'm mad that this is a battle Ev has to face. I'm mad that I have to watch him struggle through this in all its forms. I'm mad that I don't know when we will play together as a family again. I'm mad that I have to sleep is a sorry excuse for a Lazy-Boy tonight and still have it together tomorrow. And, everything I am mad about is legit...and it's ok because it's not the only feeling I have, nor is it consuming. I'm like a child throwing a tantrum...I'm not getting my way and I know I can't just erase Leukemia from his body. While being mad I am also a mix of other emotions and through it all I have peace. My peace comes from the fact that I know God is with us in this crap situation. I love God even though I am mad. And, I'm certain he gets it.

Clinic visit 2

Today was different than the last visit to the clinic. Everett needed platelets, but didn't have to get a spinal tap or a blood transfusion. We found out his ANC is 24...which freaked me out.

It makes sense that his ANC would go down before building back up, but I had a moment of "what the hell?!" With the help of our doctor and a few breaths later, I realized that this is what happens (hence the point of chemo), I just thought that Ev's ANC of 110 was pretty low last week. It only takes 500 to be severely neutropenic.

And this is why they educated us on caring for him at home. Not if, but most likely when Ev gets a fever of 100.5-101 it is vital that we call the doctor and get him to Riley. So, just as before, we are glad for the moments at home and will not take them for granted.

On the positive end, when they tested his blood today, they found no Leukemia (no mutated cells). This is a ray of light shining through the clouds. Now, we just have to wait for the clouds to get the hell out of the way so the sun can shine all over. By the end of the month when Ev has another bone marrow aspiration we will be able to know then how well the treatment was and what further battles we have ahead. This has been the longest month of our lives!

Hope comes in different forms

Everett has had more energy each day while being severely neutropenic (having a very low immune system). I am thrilled that he talks more and wants his freedom again. I expected him to be more sick as the chemo went on. But, apart from our Thursday clinic visits at Riley, his desire to walk and color is increasing. The past two Thursdays he has received a spinal tap with two different chemo drugs each time. His last visit he also received blood. Thankfully his blood type accepts all others. My count is off on the numbers of platelets and blood transfusions he's had...he was a very sick boy when he first made it to Riley.

Ev has been home 9 days now, which is a big blessing. I can't help but think that his response to the chemo and the days he's been home are due to the prayers said for him. Even though this situation sucks, we can't ignore the blessings that are happening around us. And, I don't want to ignore them either.

While I write this, Ben and I are enjoying the outdoors. We found some food outside the door waiting for us...a bag filled with a meal and tons of ice cubes. I just might be more thankful for the ice cubes right now as we smash them against the concrete and trees. For Ben, this is a great time of fun with mom. For me, I am trying to relieve some anger that I still have. Sorry, neighbors for the avocados you may have found in your yard last week...my aim apparently is not that great.

Hey Leukemia!

I don't know

Six days before Ev was diagnosed I had a conversation with my sister-in-law about how hard it must be to have a seriously sick child or one that was severely injured. We were beside ourselves with the thought of it and felt so fortunate that within our families there were no such tragedies.

Then Tuesday came and I kept thinking is this seriously happening? Am I dreaming? God, please wake me up! And then Wednesday we were given the concrete fact that Ev has Acute Lymphoblastic Leukemia (ALL). Jeff and I were asked some serious questions within 24 hours about the life of our child. Questions you never want to have to answer, questions I can't even write now.

So, how do we do it? Or, how have we gotten by so far? I don't know. I know that the love and support we have received from family, friends, co-workers, hospital staff and strangers has made us feel amazing. We don't feel alone or as scared when someone reaches out their hand, even if they don't know what to say. And, we have definitely felt the power of prayer and God's presence (I could write another post on this alone).

I don't know how we are making it, but we are...and I wish I knew how Ev was making it. He's tired and frustrated, but he continues to surprise me with his strength and resilience. Maybe it's all the chicken and chocolate milk he's consuming, or maybe it's the thousands of prayers that have been said for him.

I keep thinking of the ridiculous cartoon..."wind, earth, fire...with our powers combined, we are, captain planet." It's embarrassing that I even admitted that, but it's a good representation of what is going on. We can't all fight for Ev, but we can fight with him in many ways that will ultimately bring a larger, better result. So, each day, we all do what we can...and that seems to be enough. So, I guess that's how we are and will make it, one day at a time and trying our best.

My hero, SpiderMan

This was taken a few weeks ago, but he has been SpiderMan for quite a few months now. I call him my super hero all the time and he corrects me by saying that he is SpiderMan, not Captain America or Hulk, and definitely not a general term such as super hero.

Clinic visit 1

We had our first visit to the clinic today and it was exhausting to Jeff and me. So, you can imagine that Ev is tanked. We were at the hospital for almost 7 hours, which won't always be the case. This first month we are hitting this Leukemia hard. He is resting on his Nana now, getting tons of lovin'.

His ANC is still very low (which is to be expected), so we will have to continue to guard his immune system with all our might. It also means we could be back at the hospital at any point. In the meantime, Ev has been doing great with treatment and the docs are finding that the chromosome that is responsible for this mutation of cells in his body is one that is easier to attack. Thank God! Whew!

Ev has always been a strong boy and he has been proving it this past week. Good job Ev! And, thank you for all the prayers, we have much to be thankful for in this challenging time.

In time, hurt can be fuel for action

When we first heard the news, this photo was on my lock screen on my phone...it broke my heart to look at it. Today, this photo gives me hope and encouragement. We have valued and soaked up everyday we have had with our boys and we will continue to do so. Ev has always been a strong boy...Leukemia is gonna get a beat down.

The Beginning

It was on June 5, 2013 that we found out that Everett has Leukemia. It was a moment in time that Jeff and I will never forget. Fortunately, in the midst of blood tests and cuddling our sick boy, Everett's older brother, Ben, began singing and talking to the doctors and nurses. Ben came alive when the rest of us were falling apart. I'm thankful that Ben can't truly grasp what is happening. It enables him to be a ray of light when the rest of us need it.

We knew something was wrong with Ev about a month or so leading up to this, but nothing made sense with what we knew. Cancer was not on the radar. We went through common issues that kids have and nothing added up. Then, tiny red spots (petechiae) began to multiple on his legs and spread towards his belly and arms. He also was bruising very easily and was increasingly lethargic.

I talked with my sister-in-law who is a nurse and she had a suspicion in her mind, so she told me to go see our pediatrician. We did and our doc sent us to the nearest hospital for blood tests. From this point on we were just waiting for someone to tell us what was wrong so we could get started on healing this little boy. We were sent by ambulance to Riley Hospital for Children. More tests were given to provide a concrete diagnosis once we were there. It was also here that we almost lost Ev. He was anemic, his platelets were very low and he had a respiratory infection. I will spare any further details. We were thankful that he came around and proud that he fought the first fight so well.

We spent the next few days in ICU. But after the life changing news and horrific night, we have had a lot to be thankful and hopeful for; his respiratory infection was healed, he did well for the bone marrow aspiration, his response to chemo was great and we've been at home for 3 days now.

We are forever grateful and thankful for all the help, prayers and thoughts that have been sent our way. We could not have come this far without the help of others. Many people have asked how we have even managed to get through this past week...I'm not really certain myself. One day at a time and with love and support.