Today sucked

Today was clinic. I assumed two things; 1) that the visit would be longer than last week and 2) it would be uneventful since Ev has had the drugs before. It was the latter that proved to be false.

Everett made it through the spinal tap fine (only one more still to receive for the Consolidation phase). It was the PEG Asparaginase that caused him trouble. We are constantly being told about all the side effects that occur when a procedure is done or meds are given. Thankfully, Ev has not had very many severe reactions to the meds and we even have some preventative meds that he takes.

But today, his airways swelled along with his lips. It is unnerving seeing your child agitated and having no clue as to why. Typically this reaction occurs to teenagers more than toddlers. The last toddler that reacted the way Ev did (at Riley) was 3 years ago. Thankfully, we had nurses and our doctor by our side quickly as we were all watching him trying to figure out the reality of what was happening.

I can't say how much I appreciated that the nurses and doctors listened to what I had to say as they evaluated the situation. Even though I couldn't tell what was going on immediately, I could tell he was struggling to breath before his lips swelled and before he was hooked to monitors. Not to mention...toddlers need interpreters verbally too.

Ev just wanted it to stop, and so did we. The staff there today made me glad to be at Riley. Their eyes were on him just as mine were. And, after that suck moment, they came by to see how he was doing and they cheered for him when they saw him walk out about two hours later (excitedly carrying a new Avengers puzzle).

So, today sucked and I wish it hadn't happened...but it did and Ev is doing fine. As long as he gets back up, I can too. So, on we go. (And, yes, in about an hour I will cry my eyes out over this...because being a caregiver means that there are times when you have to hold it together due to the circumstance only to give into those emotions later so you don't blow up.)

We have 5 more weeks of the Consolidation phase and then we can move onto the Interim Maintenance phase. Please continue to pray for him. It is a blessing that his body is so responsive, but as many things in life...it is a fine line he walks with the negative reaction he had today.

I must add that our family has had some amazing days in between these clinic visits...great moments that have filled out hearts. Today was just a bad day.

Making the most out of this moment

Last Tuesday was the fastest clinic visit we have had so far. What a pleasant surprise for all of us. We left the hospital by noon with our headstrong, wobbly toddler attempting to lead the way.

At the end of our last two visits Ev has been determined that he is going to "run" out of the clinic and through the hospital. I really don't think he is so anxious to leave...I think he's anxious for his independence and freedom from his IV. The part that makes me reel him into my safety net is the fact that he still has drugs in his body that make him a bit off balance. The further along we get, again, in attacking his cells the more treacherous a fall. So, reluctantly and sometimes after a stand off, Ev decides to hold my hand while he "runs."

Ev continues to be a part of a study and, therefore, for the consolidation phase receives three drugs in his spine as opposed to one (the sedation for these spinal taps is what makes him wobbly). The study is trying to eliminate the amount of drugs that is necessary to cure the cancer. It's decided randomly, and Ev was selected to continue with what has already been proven to cure the cancer...he just might be receiving more than he needs. Thankfully, we are past the days of radiation for Leukemia patients which has been known to cause some developmental delays.

This was one of the easier decisions for us. I remember when they first asked us about participating, shortly after we found out he has Leukemia. The doc explained what information would be shared and how it would effect the treatment he received and so on. At that moment all I could think about was all the children that came before Everett and how they were saving his life. How many children were a part of a study to get to where we are today?  How many lives have been lost to this cancer? How many children died without anyone knowing what was going on inside of their bodies?

Ev's story has not been an easy one. He is only two years old and has experienced a lot. But, he is making it through and with more smiles so far than I could have imagined. I've always known him to be a strong boy, and my protector even when getting tickle attacked by Ben, and now I am amazed at the depth of his strength. God blessed us with a boy that has strength and a great sense of humor...I am excited to see what else come out of that little man as he grows.

Batman is so strong that he hasn't lost his hair yet.

Self proclaimed...Bucket Head.

Fishers...the true city of brotherly love. 

(It must also be said that Ben is quite the comedian as well)

Phase 2: Consolidation

I had built up the events of today in my mind before they had happened and before I knew their validity. Ev has been doing so well (acting like a normal healthy toddler) the past 2 1/2 weeks and I knew that today could change all that. I was trying to prepare myself for the reality rather than what I want. What I want day in and day out right now is not going to happen. Taking it step by step and owning up to what my life is right now (and what it means to all of us) is the most beneficial and ultimately, the most rewarding.

Today was long, we spent nine hours in the "hemoc" clinic at Riley's. Ev was brave and strong. He received three chemo meds in the spine and more chemo through IV, via his new port. He had his moments of anxiety, fear and anger, but also he colored, laughed and even played with his doctor a bit. Usually Ev is quite reserved with the nurses and doctors, so the fact that he can see past the pokes and other owies is wonderful.

I suspect that Ev's energy and desire for playtime will lessen as we get deeper into this next phase. He had built his ANC to 2400 during his "vacation" (hemoglobin was normal and his platelets were building back up) and it showed in his behavior. Now it's time to attack the cells again.

For the next 57 days Ev will be taking a different regimen of meds. We will be going to Riley every Tuesday and hopefully not staying overnight (truly...there is no place like home). So, here we go again...

Victory Jacks for Ev

As the days have passed since Ev got his port our anxiety has increased to hear the news on how many Leukemia cells are still left to fight in his body. When the port was placed they also removed some bone marrow to test (the birthplace of red and white cells and platelets).

We finally got the phone call today, a call from our doctor that led us to do some victory jumping jacks. I have no idea why jumping jacks came to mind instead of a traditional victory dance. It just came out as I was trying to explain to Ben what was going on and how joyful I felt.

0% is what Ev's doctor told us. The Leukemia cells aren't there and the first round of treatment wasn't just a success, it was what we all hoped and prayed for. Out with the bad and in with the good.

When Ev saw our "victory jacks" he started running around with a balloon in excitement. When we finished, he said, "do it again." So, of course, we exercised some more.

What brings our victory jacks to a stop is not our lack of physical shape, but the fact that chemo therapy is not over. This is a process that will take time. The results are promising and with the full 2-3 years of attacking this cancer I feel much more positive about the end goal.

We will resume our visits to the clinic this Tuesday, July 16. Ev will get hit hard with chemo and his port will be accessed for the first time. There is anxiety again in this next stage, but at least this round we have the victory of the first battle in our minds.

Cheers to all of you who have thought and prayed for Everett!! This is a battle that cannot be fought alone.

Love all around

The photos below are just a small glimpse of the love and support we have had in the past month. 

These green (glow in the dark!) wrist bands were created by our friends at 

Fishers Point Community Church to raise awareness and funds for our family.

One of many drawings done for Everett by kids his age and older 

(I will post more of these soon...others are hanging on E's wall).

Ben drew this the other day. He told me that it showed he loved me a lot and 

that the rocks/circles are a path to that love. I almost lost it...I grabbed Ben 

and hugged him tighter than is comfortable. 

Home never looked so good

We have been home since Wednesday afternoon and it has been great. Ev didn't have a PICC line, an IV, or port for about 48 hours. Unhooked with no meds (other than pain meds as needed). He was a free man and feeling great. He has had two baths in two days at least an hour long each. It was bliss to see him enjoying what he did before.

Yesterday, we had a scheduled surgery appointment for a port. A port is the ideal method for receiving chemo because Ev can still function like a toddler and there is less chance of infection. The port is under his skin with an access point above his ribs in his chest. The port delivers meds close to his heart so that it can be pumped easily throughout his body. Also, chemo meds are too strong for some of our veins so the meds have to travel in a bigger, stronger vein.

It sounds horrible, doesn't it? But, to continue with a PICC line is not practical or safe for the long haul and we sure as hell aren't going to succumb to Leukemia...so a port sounds like a great plan. (In the next week we will know how the battle against Ev's ALL is shaking out and we will know the next round of therapy.)

The door to childhood has been opened and behind that door we have rediscovered play-doh, finger paints and water fun. Ev may not get to play in the dirt as he did, but right now he doesn't seem to care. He feels great and therefore we could not be happier.

A better celebration

I was prepared for the 4th of July to pass us just like the 2nd or the 3rd...just another day. Then one of the nurses told me that we might be able to go to the roof tomorrow to see the fireworks. That was an exciting thought and something I haven't done before. But, better than that we get to go home today. I was prepared to not have this chance until after Fridays procedure. Thanks to negative blood cultures (no presence of bacteria) so far, no fevers, and an ANC that is at 364...we are sitting pretty.

Happy 4th!!!!

Ev and Spidey

I think E was feeling pretty good last night to have a beach ball for a hat. 

(He also tackled his brother.)

Bed buddy Spider-Man is feeling better too.

Smiles and laughter please

Everett got his PICC line removed after spiking a fever and having more cultures drawn. The bacteria that had invaded him before invaded again. It is believed that somehow that infection got into his line and continued to infect him. So, it's out now and he has an IV until later in the week when we hope his body is ready for a port. A port can stay in the body for years and is an easier, less debilitating way for kids to be kids and still get their chemo meds.

Last night we decided to have Ev go to bed without morphine. He hasn't needed it during the day for awhile and is doing well. When you give liquid morphine it only takes about 20 minutes to kick in and usually he will start to toss and turn and we know that he needs it. Well, he needed it by 2 am. This time instead of just tossing and turning, he was upset. It broke my heart as I tried to hold him and comfort him and found it fruitless. Twenty-two long minutes later, he was relieved and asleep.

I have moments when I stop and think about what he has to go through...through his eyes. He isn't scared of the strong chemo drugs or the duration of this fight against Leukemia. He fears the "pokes" when they need to draw blood or place another IV. He fears being woken up at night, even if it's just to check his blood pressure or temp. It helps that I know he is safe when he is scared, but it breaks you down a bit when you see his face and hear his 2 year old words.

I talked briefly with a dad on the floor and he said that he was hoping to get his 20 month old daughter off the floor and on another level for a change in scenery, for a walk. But, she won't keep her mask on, which protects her weak immune system. He said, well she's happy doing laps in a wagon, so as long as she is smiling. And, that's the judge of my days as well. If Ev is smiling and playing, I don't really care what his numbers are for that day or whether we hit a bump in the road. Seeing his smiles and hearing his laugh creates the best days.