What a visit to clinic like, part 2: Maintenance with no LP version

A long time ago - like almost a year and a half ago, I put up a post about a little bit of what one of our weekly clinic visits was like. And I promised to update with another post showing more of clinic - an LP, our favorite PA, Robert, etc, etc.

I finally remembered the camera on our last clinic visit! I was well motivated because it was the aforementioned "favorite PA, Robert's" last day. :( Much to the sorrow of just about every family of a kid with cancer in the Intermountain West. He has relocated to Virginia to help his aging mother. Why does he have to be such a nice guy??

But I was finally able to capture some more of what an average clinic visit is like. And our clinic visits sure have changed since Maintenance (finally) started last year! For starters, Elena has hair! :) Secondly, we now are only scheduled to go to clinic once a month, rather than once or twice a week. Which is REALLY nice. Life feels a whole lot more normal than it did the first year of her treatment. Now, unfortunately, we find ourselves up at the hospital lots more often than just once a month. Although Maintenance is a breath of fresh air, it is still cancer treatment and it comes with it's complications and troubles. I've mentioned it before, but we still go up for fevers, side effects, illnesses, and other complications. And it seems that we get admitted to ICS for some sort of infection or illness about every two months. But.... ah well. We are so incredibly blessed and we juts keep trucking along. I've said it once and I'll say it again: Even with it's bumps in the road, I'll take a day in Maintenance ANYTIME over a day in the first year of treatment. Overall, it is much better!

Elena's basic treatment schedule in Maintenance goes something like this: clinic once a month where she gets IV chemo every time and every three months she gets a lumbar puncture for chemo in her spine. Then she takes various oral chemos (and other medicines) every single day of every single month and has a steroid pulse for five days each month. The basic goal of Maintenance is to continually give lower dose chemo -with a whammy every few months- to make sure to kill off every last little lurking leukemia cell. (Wow, that was some alliteration!) Research has shown that the prognosis is much better for ALL kids when chemo is continued long term to kill off any straggler cancerous cells and "reprogram" the bone marrow. It's funny because when I would read about Maintenance before we started it and saw that Elena would be on oral chemo every. single. day. for a year and a half, I was really bothered by it and I dreaded it. From what we had experienced up to that point, it seemed like insurmountable drudgery and torture to have to constantly be giving her chemo every day at home and deal with the side effects. Thankfully, it has turned out much better than I feared. Isn't that almost always the way? Her side effects have been very manageable and they are just a part of our everyday life. We hardly ever notice them. (Well, except during steroid pulses. We ALWAYS notice those, unfortunately. :)) I'll just sum up by saying that we have been blessed beyond measure and given strength to do what needs to be done. It has been incredibly humbling and amazing to see, but that is a topic for a whole separate post. We have felt and seen the effects of all of the prayers on our behalf- thank you.

Anyways, so on to clinic! This last month Elena did not have a lumbar puncture (LP) (that's next month), so it was a pretty fast visit - just about three hours.

After we check-in, we wait to be called back for vitals and Elena does a craft in the waiting area.

Then Pam calls us back and takes vitals. From day 1, Elena thought that you had to position your feet on the little pieces of tape at the outside of the scale to make it work. She insists on standing that way and won't move until she has "done it properly".

Then Pam sends us to our room. Elena continues to work on her craft or reads a book or plays or eats a snack (if she's not getting an LP) while we wait.

Sometimes "Miss Rachelle" (the child life specialist) comes in and plays with Elena.

Then the nurse comes in to access her port, if we haven't already done it at home. Elena still hates getting her port accessed. A lot of kids get used to it and don't care after a while, but it is still a big affair for her. Can't blame her though. Here she is very melancholy while the nurse cleans the site prior to the access:

And the picture taking stops.... because I have to hold Elena still to be accessed because she is screaming and thrashing and freaking out. She really hates it. :(

The good news is (says the child life specialist) that she immediately perks up and doesn't care after it's accessed. Favorite PA, Robert, comes in shortly after that. And that is enough for her to instantly make anything better. She loves Robert!

He checks her out:

And they sit and play and talk together for a little bit (because Robert is awesome like that).

Robert and Elena

Then, Dr. Yaish (her primary oncologist) comes in to check her out and talk with us. She also loves "Dr. Ay-eesh". :)

Then we wait for counts to come back and for chemo to arrive. Sometimes we stay in our room for this and sometimes we go back to the infusion suite (aka "the squishy chairs"). And sometimes Rachelle comes back to play doctor with Elena. Elena has to access a dolly every time she is at the hospital. I think it's a major coping mechanism for her. She is frighteningly good at it - she knows every step. I really think she could just about access herself. It's pretty cute though - first she draws a face and body parts on the dolly, then she preps all her supplies and does the access (complete with crying sounds coming from her dolly) and then she finishes by putting the sticker on and complementing her dolly for her bravery ("You did such a good job holding still! You were so brave!").

(See the needle?)

Elena and Miss Rachelle

Elena and Miss Rachelle making "nerd faces"

Then the nurses come in to push her IV chemo.

In it goes...

Then they deaccess her, which she also hates (as evidenced in the second picture). But she is very brave and always holds still on her own for that part.

And sometimes (more and more often as time goes by) we run into other cancer friends on the way out, which is always a treat! Here is Elena and her friend, Cami (also ALL and in Maintenance).

And there you have it - an average non-LP clinic visit in Maintenance. We only have FIVE more clinic visits left on treatment - and that's counting this week's visit!!! I can't even believe that! Come Friday, we can say that she only has FOUR more clinic visits left and ONE LP. Wow!!! My, how two years has flown by!