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Interim Maintenance

March 29, 2009

I put up the new schedule for Interim Maintenance as  a page that you click on the top of the blog, just under the picture. As I typed it, I felt sort of sad. What was it that made her MRD a bit higher at the end of Induction Phase? Why are we going through the higher doses of chemo? It is NOT a why me feeling, just a, “wow” feeling. We do a lot more than the other parents.  But each time I say that, even in my own head, I realize that we are also going through a lot less than some parents.

Inteim Maintenance means that she will still be getting chemotherapy drugs, just not quite as frequently. UNLESS of course she ends up with a problem with the PEG. From what I understand the more that the patient receives that drug, the more that an allergic reaction can occur. If that happens she will need shots every other day for about two weeks.

Wow, we are only ONE MONTH into a TEN MONTH process leading up to Maintenance. Nine more months, assuming that all goes well, until we get into the “easy chemo” that only happens once a month.

So as I type this, of course it is late, because I do my computing after everyone goes to sleep. I gear up to doing this by avoiding all my emotions by playing on Facebook. Sometimes,  I look up articles on topics relating to treatments. Sometimes, I search the web for other mommies and daddies with lukes. (I overheard on the hospital floor when Isa was there,

“We got three new lukes, last night.”

Isa was one of them.) Sometimes, I just read weird stuff that I pick up off twitter (google Ben Mack if you really need a diversion).

Interim Maintenance will happen TWICE. The whole thing sort of looks like this.

  1. Induction
  2. Consolidation-only one month finished, so I can’t cross it off yet.
  3. Interim Maintenance
  4. Delayed Intensification
  5. Interim Maintenance
  6. Delayed Intensification
  7. Maintenance
  8. Maintenance.
  9. Maintenance
  10. And more maintenance for I don’t even know how long.

Tonight was special to me, because Papa was working, and G. was sleeping, Isa helped me around the house. We ended our evening curled up at the foot of my bed snuggling. She wanted to snuggle face to face. In this pseudo-fetal-position we just chatted about whatever a three year old likes to talk about.  Our family does pretty much everything together, so we don’t get a lot of one-on-one time. Some may call cancer stupid, or say that they hate it, but the best thing about cancer is that it opens your eyes so very wide to the

NOW! 

The Point of Power is Always in the Present Moment.


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11 Comments leave one →
  1. les permalink
    August 28, 2013 1:24 am

    Sending lots of prayers for your little one and family…we are just finishing consolidation and yesterday we had to go to the ER for a fever and cough… Thank God no pneumonia… i feel your pain.. We are also high risk more chemo.. n have to take extra meds after her LPs Since my 4 yr old has DS and hirschprungs disease that Peg really messes with her tummy… I feel so bad for her.. For all the babies n kids who have to go through this… hope your little one (now big girl) is doing well…

  2. April 4, 2009 7:18 am

    It’s funny all the nicknames they have in cancer treatment places. Lukes, cisplat, bleo, etc.

    “Maintenance” is another funny word. When the chemo nurses first started talking about putting me on “maintenance”, I thought it meant I would start receiving chemotherapy at longer intervals. No, “maintenance” for me means CT scans at some specified interval we’ve yet to define. Maybe 10 CT scans a year, maybe more, maybe less. No crazy 16 slice CT scans either, just regular CT scans, don’t need extra exposure to radiation.

    I’m guessing maintenance for Isa doesn’t mean a CT scan. Wish it was as easy as an oil change, that’s like maintainence!

    • April 4, 2009 3:00 pm

      Oddly every parent I have spoken with says that they are waiting for maintenance. I need to look over it again, but basically it ain’t your change your oil every 3000 miles maintenance. The most ridiculous thing about this protocol is that it is truly three to four or five years long. The term maintenance could be applied to the year after chemotherapy ends. We will take her back every month for a year for blood tests. THAT is maintenance! The odd thing about children’s cancer is the Children’s Oncology Group. This organization started out as two groups who merged at some point in the early 2000s. Thus eliminating any individuality of treatment. For example, if we changed hospitals to any other COG or CureSearch hospital we could expect the same drugs at the same time. To be cliche, the jury is still out on whether this is a good or bad thing.

  3. Terri permalink
    April 2, 2009 9:17 am

    Her protical should be 2 years from the start of Interim Maintenance. Gils get one year less then boys. You will get there!

    • April 2, 2009 3:54 pm

      Thanks for the reminder. I am keeping the five year mark in mind. Most children who relapse will do so within that first five years. I won’t be out of the woods, in my mind until, 2014.

  4. Virginia permalink
    April 1, 2009 1:19 pm

    Hey Girl! We are missin you all.I hold E. every night at bedtime squezzin a little bit tighter now. Was gonna have her start bein a big girl after her Birthday Jan. 7 and start sleepin in her bed at bedtime, but after your call that thought went right out the window. Who gives a $@#! if she stays in bed with me till she is 18 as long as she is there is all that matters. We will miss you in the daycare this summer. Tell Isa and Gibson we all miss them and cant wait for us all to get dirty on the playground together and eat popsicles!!
    Love Ya
    Miss Virginia

    • April 1, 2009 2:01 pm

      Exactly. I know some who have had a family bed until the teenage years. You didn’t know you were so alternative did you?! Thanks for reading and thanks for taking it to heart.

  5. Kathi Nelson Sawyer permalink
    March 31, 2009 11:45 am

    Because I read your two most recent entries late last night and I couldn’t stop thinking about what you said, I spent the morning cuddled up on the couch with Luke, our youngest, reading books with him, chatting with him about superheroes and whatnot and then watching his favorite Scooby Doo show for the umpteenth time. With 4 kids I know that I definitely don’t get as much one on one time with them as I should, so every chance we do get it, I really need to just stop and enjoy it. I have a hundred other things I could’ve done this morning, but those things can wait. You are so right that we need to live in the NOW!

    • March 31, 2009 1:29 pm

      Thank you so much for your post. It brought tears to my eyes. This is one MAJOR reason why I write. The power of positive change. If my situation seems bad, then learn from it. Thank you thank you thank you. I bet it sure freaked your son out, but you didn’t hear him complaining. The housework expands to fill the time allotted, and it is always there. The funny thing about television seems to be that we use it so much for a “babysitter” that we hardly ever sit down and actually watch, Yo Gabba Gabba with them. Or whatever… it can be fun.

      Also, a family we know two years into this treatment still has to take their child to the hospital for fevers and such. This ain’t over till it’s over. I know I will for the rest of Isa’s life worry about a relapse, but research has shown that the first five yeras after diagnosis are the most critical.

      Thank you again for believing in the NOW. It can be hard especially when they are arguing like mine are right now. Stop it girls!

  6. Natascha permalink
    March 29, 2009 10:44 am

    Enjoy the cuddle – one/on/one with each of them. Mine are 9 and 6, and they still enjoy cuddling – but it isn’t as frequent. I remember Aunt Wanda saying, that when you’re that ‘close’ with someone, you are looking into their souls. I didn’t understand that when she first told me that, but I do now and cuddling with them and that one-on-one moments are so very special to me. I feel that I’m re-connecting with them. They are so busy with their day-to-day lives, that I don’t want them to feel that what they do daily isn’t important to me.

    Enjoy those quiet times…. They grow up so quickly!

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