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. 

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!

I would trade

Jeff is known for finding great music and yesterday he found the band Clarensau. The song that left us in tears was "I Would Trade". The song says, "I would trade all of my days to take the pain away..." a feeling we have felt countless times.

Have a listen...
Clarensau "I would trade"

Today we will go to Riley to get Ev's final two shots out of 24 in the past month. These shots are painful but effective.  Ev also seems to be more achy all over. So, taking his pain away is just one thing I wish I could do for him.

Today is also the last day of delayed intensification. We will begin maintenance on Tuesday, February 4 with another spinal tap and vincristine. His counts have to be higher to begin this phase, so my guess is we will be delayed a week and that actually sounds great to me. This is an exhausting journey, even with help from family. I can't imagine if we didn't have any breaks or date nights. Thanks to our beautifully loving family!!!

Maintenance is full of chemo drugs, but ones that can be given at home instead of at Riley. It also seems to include meds that he has already had. This phase continues for a long time. I don't have it all laid out yet, but we have about 2 1/2 years more of treatment...so somewhere in there.

We will eventually get on a schedule of going to Riley once a month, but I don't think that will truly happen until March and even then we could find our way back by how hard the chemo drugs hit. But, this phase "should" be less intense.

While writing this post, Ev climbed up behind me...

One day at a time

We went to clinic yesterday and Ev's ANC is 196. He was in the 1200s last Tuesday. He's dropping pretty fast and his platelets are too. Our doctor is great at preparing us in many ways, from the current moment to the next 2 1/2 years. I soak in all that he says as I think about what this means...who can watch Ben? Ev can't rough house, it's too dangerous...what meds are left until we get another break? how long will our hospital stay be if I have to bring him in for a fever? can he wait until wednesday for a platelet infusion, can he wait until Friday for a platelet infusion? Ugh! Can I make any of this stop?! ...No.

Apart from the chemo shots Ev had yesterday, he did really well in dealing with what was happening. He hates those shots more than anything...so now he gets a surprise after each of them. There are so many times that I just want to shower that child with new gifts, but I know that's not what would truly help him, nor is it what he truly wants. Nothing beats hugs, kisses and encouraging words. 

Ev is currently crossing the finish line on potty training. He thrived off of the cheers of his brother and family. He walks around in his Avengers underwear so proudly and I am so proud its hard not to cry at times. (Because potty training for Ev wasn't like it was for a healthy child...he endured painful sores which brought about the timing for being potty trained. And, in spite of the pain and obstacles, he just kept trying.)

Both of our boys are showing how beautiful they are...hugging, holding hands and encouraging each other. They did this on their own yesterday on our way out of clinic, and its not the first time...

Jeff went completely bald and took of the beard too. We both gave Ev the decision and dad had to take it all off. I got to keep my hair.