Maintenance

When Ev was first diagnosed he was considered high risk. His counts were crazy and that was a big part as to how we almost lost him that next day. So, there are certain adjustments that are made because of this. During the maintenance phase he will get more spinal taps (the doctor takes spinal fluid and then inserts chemo into the spine). He absolutely hates this part and will tell us all that he doesn't want "wrinkly eyes." He is sedated for this procedure and that's how he gets wrinkly eyes. The loss of control unnerves him.

The bigger picture is that Ev's response to all of his treatment so far has been positive and the staff often does not consider him high risk. This gives us more confidence that he won't relapse.

The maintenance phase will last awhile. Girls usually go for about 2 years and boys go for about 3 years. They have found that the boys would relapse because cancer cells were hiding in the testies. The longer treatment seems to take care of any hiding cancer cells.

So, once a month we will go to Riley for chemo (he will not get a spinal tap every visit). And, at home, throughout the month he will get oral chemo. Our goal will be to stay out of the hospital in between visits as much as possible, which so far we have been blessed with that uncommon advantage. We are a rarity to the cancer world with the amount of time we have been able to be at home (aka no fever...no infections). I am so very thankful for this alone. It's big for the well being of our entire family.

It will take some adjustment on my part because I won't have a weekly update on his counts. Ev is as unpredictable as he is strong (and loud). So, his behavior, skin color, etc. will not necessarily clue me in, but I don't fear this...I'm just concerned. Perhaps a small distance between the two, but a difference none the less.

Many steps have been taken to get to this point, some easy and some the hardest we've ever taken. But, there is such a joy knowing that our family of four is all doing what they can to keep going and doing so with laughter and love at the center.

Some birthday photos

Ev was excited and very much aware of his birthday this year. He helped pick out decorations, his cake and even some of his presents. I think it was all he could do to stay awake for it. There was a lot of excitement and fun.

We usually do serious and silly family photos...somehow the silly always ends up being my favorite. (No, Ben did not feel like participating...but his serious face makes me laugh.)

E is 3! 

Ev picked red velvet cake and blue icing, so Captain America seemed the most logical. But, we did sneak Green Goblin and SpiderMan on there too. (The band-aid on his head was there for psychological reasons rather than physical. He has a growing need for band-aids even when there is no injury.)

We all took turns wearing SpiderMan masks. 

Ev was tired by the time we got to presents...Ben was not. So Ben kept shoving present after present in front of Ev and Ev just kept going as fast as he could. 

Birthday first, maintenance phase next

We went to Riley yesterday to begin the maintenance phase, but Ev's counts were too low. His ANC is 192 and he needs to be at 750. I was a little relieved actually because we are celebrating his 3rd birthday this Saturday and I think he will be able to enjoy it more now. (We have to keep an eye out for a fever, but this is always the case. So, it doesn't loom over our heads quite as much as the cocktail of fever, chemo meds and its effects.)

It's hard to plan anything when you have a sick child. We don't plan too much and when we do, we know it might be cancelled moments before or even in the midst of it all. Even when you accept this reality it's still an unwelcome guest every time. So, when it came to Ev's birthday we had to take a guess on when to celebrate it and in the back of my mind I am thinking about how we can celebrate it in the hospital if necessary.

I want to control this, but I can't. What I can control is that we are going to make this fun no matter where we are and what is happening. The joy in our hearts that we have being able to celebrate Everett's birthday this year cannot be taken away. The thought is still raw in our minds of how close he was to not making it to the age of 3. But, he did...so we will party! HAPPY BIRTHDAY EVERETT!