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.