Friday, February 12, 2010

Life in Maintenance

The past month and half has been relaxing, fun and full of meaning. I haven’t yet forgotten the 6 months of hardship. I still think about the many sick people in the hospital. Despite my rejoining the well world and returning to normal life with fun filled activities and outings, I will find myself reflecting on some of the simplest yet finest moments of our day. Watching Yousuf play and exert all his energy in running, laughing and talking brings more happiness than exhaustion.

At times I will be at the brink of my patience in dealing with both Yousuf and Omar but there will always be some memorandum in my head ushering my thoughts back to the importance of my role as a mother. I admit it’s much easier to do when juggling his menu of medications like some walk through a cafeteria line. It reminds me of how, at any moment, he could return to the hospital, there is always a chance of the worst happening. It’s easier to understand and realize that when you feel you have been through one of the top worst.

No matter the old familiarities, life will always be different now. Rummaging through my purse at a red light in search of a Kleenex, only to keep pulling out hand sanitizers, folded up papers with blood counts or even a left over oxygen mask, interferes with what used to be called normal. Every two weeks we are still waiting a couple hours in doctor’s offices anticipating the same kicking and screaming. I still fear sickness and worry with every ache, bump or prick.

I found myself a bit more relaxed around other kids and public places, since many kids like him have returned to school. I’m still unsure how strict or not strict I should be. I found a message on my phone today from Yousuf’s nurse. I thought she was calling about a prescription refill but instead instructing me to stop all of Yousuf’s medications for the week and wait to check his blood count again next Wednesday. His blood counts, yesterday, showed he is neutropenic and will need to wait to reevaluate his counts in a week. I’m back to constant temperature taking and being home bound…now there’s something familiar.


  1. MashaAllah, glad to hear you have some normality back. Remember it is still important for them to be getting neutropenic during maintenance, otherwise they start increasing dose.
    Sumayah's cycle is that she is neutropenic every 5 to 6 weeks at which point shes taken off medication until her counts recover. She does tend to get an infection when she's neutropenic, although not always, and then its hospital for a few days for iv antibiotics. But Alhamdulillah shes not actually unwell during these stays.

    One advice a mother whose child had relapsed gave me was that make sure they are getting neutropenic, its an indication that the cells are being killed and they are responding to medication.

    InshaAllah I pray you have a comfortable journey during this phase,

    Umm Ibraheem

  2. Thank you so much for that comment. That makes me feel so much better. I hadn't looked at it that way, but it makes sense. It's all such a fine tuned plan. We are so fortunate that they have learned how to treat this disease.

  3. Well, when I got the message I said to myself, "But isn't that what they want?" I guess they seemed worried only to monitor him a bit closer and to stop medications at that time so it doesn't get too low.

    Yes, fortuate there is a better treatment but I wish there was an even BETTER ONE!

    Umm Ibrahim, thanks for the info. I wasn't there to talk to the doctors when Yousuf was starting his maintenance and missed that conference. I only saw one of the doctor's later on his lunch and he did say we might have to adjust the dosage later. I wanted to ask what did that depend on but I didn't want to take away more time from his lunch though.

  4. funny, was just discussing today how in a couple of decades there'l prob be a far easier and shorter treatment regime!
    i'm always so fearful of neutopenia, but thanks Umm Ibraheem, I will not be next time iA!
    we're into day 5 of intensive.. and boy are the high dose steroids showing their effects...
    and Umm Yousuf, glad you enjoying maintenance mA!