Thursday, March 3, 2011

Second Year on Maintenance

I was holding Serene in her little cute dress with her bare feet dangling down. I glanced down and saw red dots on the top of her foot. As soon as my eyelids opened a second time to see her feet I looked at it as if it were identical to the tiny red dots called petechiae that were behind Yousuf’s ear when he was diagnosed. I became dizzy and my heart started pounding hard. When I looked a third time I took a deep breath seeing that they were just tiny scratches. As a typical 6 month old she likes to hold her feet and perhaps it’s time to cut her nails once again. Just when I started to think I was recovering! I wonder when I will be able to look at a sick symptom and NOT think of the worst case scenerio of it's cause and reason. We started the second year of maintenance late January. This is what I can say about it now…

Counts are high and medicine is increased every 2nd high blood count (about once a month). Yousuf is currently on 6 methotrexate pills every Wednesday, Mercaptapurine every night,6 2.5 ml of the steroids for 5 days every month, pentamidine once a month, and of course the round of chemo every month and spinal taps every 3 months.

During the 5 days of steroids I have made a habit of having some sort of food easily accessible for Yousuf for in-the-middle-of-night cravings, so I don’t actually have to get up.

When Yousuf starts acting more sensitive to a situation….even more so than his usual self I automatically think what time of the month is it and if he just had his round of chemo.

I’ve memorized the hospital’s number, have the valet on speed dial, and know just how to talk to get what I want and who I want on the phone.

When the computers are down the pharmacists will go ahead and prepare the prescription knowing Yousuf’s name and drug he needs.

The pharmacy no longer offers medicine syringes with medicine knowing they have given me at least 30 already.

I’ve not only memorized the “on hold” messages they make you listen to for TCH, but I have memorized it in Spanish, too.

I’ve had a chance to give blood and enjoyed every minute of it…even the pricking of my finger and the needle poke. People kept looking at me weird when I kept trying to plaster the lose band aid on my fingertip, excited to run home and show Yousuf.

A lifetime of always wanting to be at my thinnest I actually would rather stay the weight that is required to give blood.

I took Yousuf to his regular pediatrician and we sort of laughed at Yousuf’s growth chart. There is usually a tiny dot on the chart where his age and weight meet telling his percentile. Yousuf has a solid line due to how many times his height and weight have been taken since 3-5 years old.

I have fantastic judgment on the limit of people that fit in the elevator at TCH …strollers and all.

I can tell his story without crying now.

I still tear every once in a while when a painful memory arises or happy memory that reminds me of how blessed I am to have Yousuf.

When Yousuf gets excited about an item at the grocery store he turns it to the ingredients and asks me if it's junky for him.

I’ve collected about 15 oxygen masks (from surgeries) and started saving the empty medicine bottles. I’m thinking art project.

Despite all the hospital visits, lumber punctures, and finger pricks Yousuf still seems to act and display the most normal typical 5 ½ year old behavior, both in his mental and physical functioning. He might be above average in sweetness though. This, I must admit, I am not thankful enough to Allah (swt) for.


  1. Yousuf has a wonderful Mother!

  2. Subhan Allah may Allah continue to pour on you and your family the best of patience and reward you with the highest level of Jannah and give Yousuf the best of shifa and that when you both look back - that is only a memory full of lessons - may you live to see all your children prosper, grow and thrive with love, peace, and most of all iman in their hearts and sunnah in their practice!

  3. Correction on the dexamethosone...1 2.5ml twice a day for 5 days. They changed the ml amount to .75 so I had to give him 4.5 twice a day for 5 days....but I didn't. This was my first mistake with his medicine. The doctor didn't want to give him another steroid session. Insha'Allah, next time they will go back to the ml being higher per pill.