Cancer...I hate you

I was starting to feel invincible. We haven't been admitted to the hospital for 6 months and there have been no surprise visits to the clinic. And then this morning, we woke up and Ev was hot, clammy and listless. As I sat on the kitchen floor with him (not sure how we ended up there), I was reminded more fully the battle we are fighting. And, reminded of how he looked when we first took him to Riley.

Now that it has been almost a year, we've had so many days that have been more than just tolerable they've been enjoyable. Since Christmas life has not had any emergencies, those moments when you would run out of your house with your baby in arms to get him/her whats needed...all the while not noticing that you aren't dressed or forgot to put on shoes. Moments when friends have to remind you to eat or shower.

There are always ups and downs in life, but the ups and downs of cancer attack the soul.

But, regardless as to how Ev woke up this morning, he is currently playing in the tub as if none of it happened. He seems to be ok and he is singing "Let it Go" at the top of his lungs. And, again my heart bleeds...but for the joy rather than the onslaught of pain.

Month 3 of Maintenance

Ev has just finished his third month of maintenance. It has gone smoothly and no backlash from the small risks we are slowly starting to take. And, we got to the bottom of "wrinkly eyes."

Awhile back I posted about how Ev will get wrinkly eyes when he is sedated for a spinal tap. Well, he doesn't like spinals (who does) and getting wrinkly eyes freaked him out. So, after talking to one of the nurses we determined that the doc sedating him needs to balance the meds differently. Either balance the med or sedate him quickly.

This past visit he was sedated quick and it freaked me out. I wasn't ready for him to go limp in my arms in 5 seconds. My heart dropped, but I can see the vitals just like the two docs and two nurses in the room with us. So, all was well, but what the hell?! It's unnerving to hold your child while they are being sedated anyway and I just didn't know going quick was an option. Ev said he had no wrinkly eyes this time, so that was great and now we have a better idea of how to keep "wrinkly eyes" away for good.

Ev continues to relax more and more. He knows now that he doesn't have to be anxious or fearful the whole time and that even though the nurses might cause him pain or discomfort that they are caring people. He'll ask me what the nurses are there for and then act accordingly.

The summer promises to be a good one...we have plans underway with Make A Wish (http://wish.org/) and Ev has done a 180 from where he was almost a year ago.

Month 2 of maintenance...check

Today we signed Ben up for kindergarten. A big step for him (and me). After all the formalities, we went outside to play. As the boys ran off to play on the playground I had so many thoughts and feelings flood my mind and heart. I was so excited for Ben and this big first step he was about to take and then I realized that Ev was playing on a playground. The last time he was on a playground was when we had to hold him up and help him out. Due to the time of year he was born and then getting sick last spring, he didn't know what he had been missing. It was such joy to see the two of them take off yelling at each other with such excitement.

Ev is signed up for preschool in the fall. My hope is that he will be able to fully be a part of it. We have no way of knowing whether his immune system will hold up well enough or what might get passed around at school. He is not up to date on immunizations either, as his body cannot take it until a year after treatment is done. So, we are taking a shot in the dark because it's what he wants and we have to start taking some risks.

Maintenance is not as cut and dry as the treatment phases prior. Before the lines were pretty clear and there wasn't any wiggle room. We did what we had to do and everyone made sacrifices. Now is the time that we start deciding how and where we will take our risks as we reenter a world that we temporarily left behind.

Ev continues to do well. I am still very much aware and thankful for every moment of it. And our return to clinic this past month was the shortest on record. He only needed one chemo med, an update on his counts and more prescriptions. Ev's ANC was 2000, the highest it has been since sometime prior to being diagnosed. This elevated ANC could be partially due to the fact that the boy just keeps on growing like a weed and there hadn't been an increase in his meds. So, this time an increase was given and that might bring him down a bit. The comfort zone for the docs is an ANC between 500-1500 for the maintenance phase.

In the months ahead we are starting to fill the calendar again with activities and outings. And, then I am  arbitrarily filling the calendar in my mind with trips to the park, camping, hiking and all the random outdoor fun to be had.

Cheers to health and the greatly anticipated warmer months (especially in the Mid-west)!

Returning to clinic...a month later

I was anxious in a bad way about our return to Riley last Tuesday. We had been able to stay home for an entire month and I didn’t know how Ev would handle going back. In times previous when we had a lull in visits and then returned it was harder for him. He was more resistant to the situation. So, I prayed a lot as the day approached.

One thing life has taught me is that I am a strong and focused woman, but those qualities have limits to them. It takes a lot to care for a sick child. I knew that I would fall short, I used our month at home to live outside of his illness more than I had been able to previously. It was important for me to acknowledge my need for God’s presence, strength and guidance. (I can’t think of anything that’s not cliché to say in this moment, so don’t let my use of it deter its trueness).

Ev told me he didn’t want “wrinkly eyes”. When he gets a spinal tap he is sedated and refers to that as “wrinkly eyes”. I told him exactly what was happening, as it was happening (he gets other meds and he doesn’t know when the sleepy medicine is coming and so he was nervous). It was the most peaceful spinal tap he has ever had. He was listening to me rather than screaming and flailing…his doctor and I kept looking at each other in astonishment.  There was even a med student in the room and we had prepared her for how unnerved he gets, except it didn’t happen. And, when he woke after the sedation wore off, he told me he didn’t get “wrinkly eyes” (even though everything was done the exact same as all the times before).

For those who don’t believe in God this will seem obtuse, but for those who do and have experienced the peace and joy that comes…this will hit home. I was almost in tears at the blessing of Ev, a toddler, having a moment of peace and stillness in a moment that has caused him severe anxiety the ten or more times it has already been done. The day went smoothly and we were out of the hospital a little after noon. And, it was great that it happened to me a warmer day, so Ev got to play with brother outside when we got home. A day I had dreaded became a day of joy.

God was there. He has been here through all this…even when I wanted to write Him off in my anger and confusion. It is joy to know that God is there for me and it leaves me speechless when I see His hand on my children. 

Three weeks

I can see the goal and it's almost in reach! It has been three weeks since we were last at Riley and if we make it 8 more days then we will have achieved another goal...no unscheduled visits, or admittances for a month.

When I first heard that we would only be at the hospital once a month it was such a relief to know we would get a break and that we would be another step closer to moving on with our lives, for Ev to be healed. Then, when I saw the list of meds that he would continually be taking, I pictured these monthly visits to be a mirage. I figured his counts would be so low that we would find ourselves with a fever and back at the hospital. To me great joy, we have stayed away and it feels great.

Ev has been doing well and is unfazed physically and emotionally by the drugs he is taking (there is no extra drugs beyond the basic to combat side effects). He acts healthy, playing with his brother, fighting with his brother, tackling anyone in sight, dancing to music, practicing karate kicks, eating as much as a grown adult and bonking his head a million times during the course of a day. We are blessed.

Ben just kicked a 24hr. stomach bug. He was puking and had a temp of 102. None of us like seeing our kids in this shape, it bites. But, when he woke this morning he was good and so far Ev has not caught the bug. How is that even possible?! We'll take the blessings as they come.

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.