Tuesdays with Ev

Today we didn't have to go to clinic until noon. Ev received one IV chemo med and will continue to get the same at home for the next three days. Ben went with us this time because the visit was supposed to be short...and in fact, it was. It was great to have a short day at the hospital.

Next week we will be there three days, and the week after...three days. Ev will receive a shot with an alternate drug to PEG (the one that he had a severe allergic reaction to). It's easier and less traumatic for kids to receive PEG through their port, but that isn't possible for Ev and 10 percent of the other cancer patients at Riley. So, one shot three times a week for two weeks. Ev is really not gonna want to go to Riley...but, maybe he will surprise me and it won't be so bad. It's possible, but not likely.

In three weeks, we will be into the interim maintenance phase...I eagerly await the sentence. Will it be long with fewer visits? Or, will it be short with more visits? In truth, I don't care...each day that goes by is one more day closer to kicking this thing in the tail. 

No baldies here

When we first heard Ev had Leukemia, one of the thoughts that went through our minds was, "when will he loose his hair?" It was predicted that he would loose it within the first month, but now we are about 2 1/2 months in and he's still got it. A weird happening in his situation. His hair has thinned (and is very dry), but he's definitely in the minority when we go to clinic. 

His ability to keep his hair has helped me to pretend that some days are normal. I don't always look at him and say, "oh, my poor sick baby." And, it has led to people asking why he wears a mask in public. None of the questioners expecting me to say that cancer is his ailment. 

So, last Friday, I cut his hair. What an amazingly big job. I have always cut the boys hair so I have a system (and their hair grows the same, so it's the same thing for all). But this time, in order to get the job done, I had to do various yoga poses over Ev while he played in the tub. He tried to jerk away at first to protest, but eventually he calmed down enough that I at least had once less obstacle. Anyways, it ended up ok...and he kinda looks like a hipster now. Especially, in this photo...

We were all planning to shave our heads to support Ev in his fight against cancer, I guess we can put the clippers away. 

Choo-Choo room

Fortunately, yesterday was as uneventful as it was long. We left the house at 7:20am and didn't return until 6:15pm. Part of the that time was due to traffic, but none the less, it was a long day at the clinic. We got the "choo-choo room" again, which only means that Thomas is on the wall (a lone wall, in a room sectioned off by curtains).

I like that room because every time we are in it everything seems to go smoothly (I am becoming a bit superstitious). There is one room that I don't want to go back to because odds are stacked against us every time we are there. Some of the nurses know my feelings, and it's nice to be able to joke about it.

If we couldn't laugh at some of the moments in this chapter of our lives, I am certain we would explode, implode, or something else undesirable.

Ev's ANC was 1952 and so we were able to continue with his chemo therapy. He received two different drugs and tons of fluid to make sure one of them didn't do any unwanted harm. He did well and was exhausted by the time we left. He went to bed at 6:30pm.

He will have more chemo at home this week and next and then we will have another break and assumably another bone aspiration to see how his body is responding. I am looking forward to the next phase because my hope is that we won't be at the clinic as much and that he won't need as much chemo. We will see, none of this is predictable, not even by the doctors.

False start

We went to clinic yesterday prepared for a full day at the hospital, but ended up leaving after two hours. Ev's ANC was too low to handle the chemo that was to be given. So, we have another week off for his body to create more cells.

As a family, we have gone from a fairly routine life to one that can vary daily. After two months in to treatment, it seems to vary weekly. We are forced into an anti-rthyhm existence. We have to take each day at a time and not plan much further. And, we know that no matter what we plan it may not come about. In some ways, it's frustrating (for example, when others ask if you want to do something and you're not sure if you can, or if you are willing to leave Ev out of the action, again). It's hard not knowing where the finish line is. And, in other ways, an anti-rthyhm existence is helping to be in the moment and to enjoy more of it.

I wake up thankful that Ev is here with us and that he is fighting so wonderfully. I'm glad to be at home with the boys and glad to still be able to see friends and family. And, I'm glad that I can see how God is taking care of us. The rest are just details that don't amount to too much.

Another Tuesday

Last Tuesday Everett's hemoglobin (red blood cells that contain iron and carry oxygen) was low and he was on the fence in needing a transfusion. But, since he had a reaction to the PEG chemo our doctor didn't want to give him something else that might cause his body to react in a negative way. So all week we watched him closely. And, we made it to the next Tuesday without having an extra visit to the hospital (which means no extra pokes and no reason for increased anxiety on Ev's part).

When we went into clinic our nurse and doctor thought that Ev looked pretty good and above all his energy level was very high, so we started guessing what his hgb was. We were off, Ev somehow seems to maintain a high energy level regardless of a low hgb (or a low ANC...as shown last month). So, two things came to mind... 1) Ev is strong and even an illness won't mess with his fun and 2) how the hell am I going to know when he needs more blood when he acts great all the time?!

Yes, I do look at his color to evaluate him, but that's not as simple as it seems...it's not consistent and the only time Ev really looks like he has color in his lips or face is 24-48 hrs. after a transfusion. Of course, I verbalized this to our doc and he reassured me in a rational way (which is pretty much all I accept when it comes to all of this...because telling me, "it's gonna be okay" or "you'll know" doesn't cut it).

So, Ev got his last spinal tap (at least for awhile) and a less intense chemo med in addition to his blood transfusion. We were there for awhile, but Ev got to sleep a little and Ben stopped by to hang out with us.

Ben is a great older brother...he squirted hand sanitizer on his hands and was ready to help and figure out the clinic. I had wanted him to come so he could see what his brother has to go through and to better understand why he is usually with family or friends on this day. I've told him that we try to have fun there, but really all of us can't wait until its our time to leave and as Ev says, "I'm all done." Ben didn't get the picture...he was stoked about the orange popsicles he got and he even raised the roof to the nurses during their meeting and had them all laughing. Oh well, it was worth a try.

Next tuesday will be an even longer day with more drugs (at least no spinal tap). And, this week Ev doesn't have to take any chemo meds at home and barely any other meds, it will be a nice break.

For those in tune with his ANC, it was 780 last week and 850 this week.

Life is good...thank you!

Unintentionally, I sat down with a mug today that says, "Life is good." Thankfully, my first thought was..."it is pretty good." A few days ago, or after watching Hotel Rwanda or The Pianist, I would have laughed sarcastically at the mug and thought, "yeah right." 

The truth is that life is both good and bad. There are times when it breaks my heart and spirit to hear of one more person facing a life-threatening illness or just knowing that there are so many in need. And, then there are times when I'm overwhelmed by the beautiful love that people have and share with one another.  

Eventually, my thoughts went to all the people who have helped us in the past two months. Many of you have thought and prayed about us, sent meals or gift cards, sent care packages for Ev, bought Leukemia bracelets to show support, and I even had someone buy me dessert and another, a pedicure this past Monday. And, we can't forget a person who has been sleeping on our couch for the past two months, my mom. 

Regardless of how you have helped, you have and every bit has been beneficial to our happiness, needs and sanity. It's people like you that make us believe that "Life is good." I'm certain that we are one family of many that you have helped. And, with people like that...it's a joy to get up every morning. 

Thank you for all that you do! And, thank you that you took the time to share your love with us...we will never forget it!

It's not easy getting a happy photo of Ev...because he's usually a blur. 

He can't keep himself calm for a minute.

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.