Making it

A week ago today, we finished our 4th round of high-dose methotrexate. Ev has one more chemo med to take this evening and then we are done with the interim maintenance phase. Being in the hospital so often these past 2 1/2 months left me feeling confused as to where to call home. Our desire is always to be at home, but the hospital has become familiar and with that comes a comfort. And, thankfully, the last two visits went smoothly.

Ev still thinks we will be going back any day now. As I get him dressed for the day, he tells me that he doesn't want to go to Riley. To my great joy, I have been able to tell him we are not and that we get to see family, take brother to school or go to the store. He will tell people that he gets poked at Riley, and that seems to be his greatest reason for not wanting to go. (As a mother, I can handle this fear of his and not be overwhelmed by it. A poke is so small on the scale of what he has and continues to go through.)

The other night, Jeff and I were asking the boys in which state they were born. Ben says, Vermont and Ev says, Riley's. It was a good laugh for all of us.

In a weeks time, we will begin the delayed intensification phase. This is the last big hit before the much longer maintenance phase. So, from the second week in December to the first week of February Everett's immune system will get annihilated (assumably). My goal is to do the best I can to keep him out of the hospital. When and if his ANC reaches the low digits or 0, there's nothing I can do.

I can't control any of this, but I can still do something about it. A confusing statement, but very accurate. So, we will figuratively board up our windows and doors and stay away from civilization as the Oncler from The Lorax did. But, please don't pity us for it, we are happy, alive and thankful for where we are and the victories that have been won. Ben will still go to school and we will still be able to see family.

So, we will see what comes of these next few months.

Ev was Captain America for the entirety of our last visit. This also means he slept in his hat/mask.

When we walk around the hospital, Ev has to wear his mask...there were so many people that recognized him as Captain America that when we got back to his room he didn't take it off for a couple hours. 

Always delays, but he's OK

Ev's immune system was not ready for last weeks round of chemo, so we got to have Halloween at home. Jeff and I took the boys around our neighborhood and they didn't have to work hard for a bag that was so full they could barely carry them. There are perks to a neighborhood with not many kids, but tons of adults wanting to be a part of the fun celebration of pretend play and yummies.

This past Tuesday we were admitted for Ev's 3rd round of methotrexate (etc.). He had a spinal tap that day as well, which left him with nausea...and a Spider-Man mask. He didn't even mind feeling sick...he was Spider-Man! The mask was either on top of his head or on his face for the rest of the day...

Ev's body is already clearing the chemo very well, which pleases mommy! And, apart from a few discomforts Ev has felt great and has been able to show off his super hero moves and his painting abilities. After this visit, we have one more round and then we will be on to the next phase, which promises to be a break in comparison to the last 5 months. 

I am so blessed and thankful that I get to be here with him the whole time (not every child has that luxury and it breaks my heart). Thank you to everyone who has helped make that possible!

Not alone

Ev watching the video clip of kids on the HEMOC floor of a different hospital sing and have fun to the song "Brave." He has already watched it four times in about an hour.

Children's Hospital in Minnesota "Brave" video

Halloween at Riley

Our camera has been out of commission for awhile. Honestly, it's almost worse than the camera on our phones. But, as I was trying to de-clutter our house today I came across the wretched camera. I looked at the last photos that were taken and they were of Everett's 2nd birthday party. I almost lost it...that healthy face, no presence of emotional or physical scars and a head full of shiny blonde hair. I stopped looking because I could remember the day well enough on my own. I also had to stop feeling sorry for Ev, myself and our whole family. We aren't at the mercy of this cancer and therefore can not feel sorry for ourselves. Even though the rippling effect of cancer can steal moments from us, we still work hard to get them back and find new ways and new moments.

Ev has successfully gone through the first half of his interim maintenance phase and I am thankful. It was not without issues and moments of concern, but he made it through. There were a couple of times  in the hospital that he told me he was sad. One of those times, I told him I was sad too and he told me that wasn't ok. He told me I had to be happy. So, I lied and told him I was and he was content. The silver lining in moments like this is that I do have the power to lift his spirits and that at times he will mention people who he thinks of as happy. He'll say, "Mommy, I'm going to be happy like daddy."

In a months time we will have two more scheduled admittances for high-dose methotrexate and vincristine. Also, in the next week he will get a new port (this was the root of the issues we've been having). So, Halloween will be at Riley and Ev wants to be Batman. Lets hope he doesn't break another line when he turns into Batman while attached to his fluids and meds. Kids...super heroes, were never meant to be tethered to anything and he reminds us regularly.

A few photos

Ben's pre-K teacher asked for a family photo...and we don't have any (oops!). So, I took some with my phone while at a favorite walking path of ours.  

Ev has not lost any more hair, but I did shave him pretty close so that we wouldn't have to deal with his hair while we are in and out of the hospital for the next month or two. The boy loves to swing.

Not lucky

I am fond of taking personality tests. So, when I saw a fun one on Facebook today, I took it and found that I am many things, but foremost, I am lucky. Well, crap...I guess I can't believe the description. First, I consider "lucky" to be on a message found in a fortune cookie and second, no, I am not.

Yes, I am aware that these descriptions hardly tell us the truth about ourselves, but I still get intrigued to see what people come up with.

Today has been rather unlucky for us...little things that by themselves are not so bad, but piled up...I am just glad today is over. A note to that...thanks to the Ronald McDonald house I was able to do a load of laundry (those boxes secured next to the cash registers at Mc D's...well the money helps in many ways, but now we smell good too).

We've been in the hospital for 5 days now. It was predicted that it would be 3-5days, so we aren't too far off. The part that messes with my sanity is that Ev's body was doing awesome at getting the methotrexate out of his system and then all of a sudden his body decided to slow and then chill out.

So, we have two blood tests a day to check on his levels and then he takes a med that helps build up good cells. This evening his fluids were bumped up, so a diaper change every hour is a realistic possibility.

The nurses had to re-access his port because the needle slipped out. His skin started to swell with fluid. Ev found it uncomfortable, but he wasn't in pain. And, even though he didn't want to deal with any of it...a Dum-Dum at the end seemed to make it all go away.

Hopefully by morning more of the chemo will be flushed out so we can go home and be a family again.

Interim phase: Round 1

We were admitted to Riley yesterday and we have 3 1/2 hours left of the 24 hrs. of methotrexate. The finish line is before us and he has done so well thus far. His body has needed a little bit of help to excrete the fluid/drug, but that is a typical occurrence in this situation.

Ev's body is being polluted with this drug to wipe out both good and bad cells and then we go in and rescue his good cells with another drug. So, once this 24hrs. is up, we will be working to get methotrexate out of his body. When this is achieved we get to go home (3-5 days).

I had prepared myself to help a sick upset child get through the day...all the while having to go through every article of clothing I brought as toxins pour from his body. But, alas, victory for now is ours!

Ev's ANC yesterday was in the 3,000s! It's great that we can see that the treatments are working as his body takes longer to rebuild, but does rebuild and does in a big way. Today, we can breath easier.

Loving air hockey and scoring on himself.

In our room with his favorite puzzle.