Saturday, March 27, 2010

Just a spoonful of sugar!

Now there’s not such a healthy ingredient to be taken by spoonfuls! I’m sure Mrs. Poppin’s could have chosen a healthier way to “get the medicine down.” Perhaps that’s left up to us experienced moms with sick kids. I usually use apple sauce or yogurt unless the medication cannot be taken with dairy. As for Yousuf, he has been off all his oral chemo-therapy drugs now going on three weeks. Of course, I’m enjoying the freedom and the more original Yousuf that is being revealed due to the side effects tapering off. Yousuf has been neutropenic for three weeks now and we will get a recheck on his blood next Tuesday to see if we can resume his chemo-therapy drugs. He did have high enough counts to get his spinal tap and other chemo-therapy drugs that aren’t count suppressant.

When talking to Dr. Margolin this last visit, we had a few new questions. Yousuf, as well as anyone on this treatment, has to take an oral antibiotic to prevent a certain infection from occurring. Dr. Margolin explained that the amount of kids they were losing to the actual leukemia and to this certain infection was the same amount. When the kids take this antibiotic they usually have no problems, therefore it is essential that they take it. There are times when it cannot be taken, for instance it can’t be taken within a day or so of certain chemo-therapy drugs. The doctor would often say that’s okay since the drug stays in the system up to three weeks. So my question was simply, why can’t we just take the drug every three weeks instead of every week? I feel the less medicine the better, I can’t help it. She came and said that the EFFECTS of the medicine stay in the system but not the drug. It’s too risky to say that the effect is still there to keep this infection away. However, if Yousuf continues to be neutropenic again we will discuss different options for this medication since it is count suppressant. She said we like to change the non chemo-therapy drugs before the actual chemo-therapy. The dosage he is on is low since he is on the lower risk ALL, so she doesn’t feel comfortable going with something lower.

I also asked her about Yousuf’s schooling. He’s not in school right now but I asked her when he goes that means he will miss a day almost every week since we will be at the doctor’s? Dr. Margolin looked up from Yousuf’s chart and said with a smile, “I think it’s worth it.” I felt a tad embarrassed as though my goal was no longer to cure Yousuf. I smiled and continued to ask my questions. I asked about attending school at times he is neutropenic. She said they prefer him not be in school during these times. She said they have dealt with many schools with these same issues so just to inform them and they will write as many doctor’s notes or make as many phone calls as they need. Of course, my concern is not so much an uncooperative school as it is the impact of missing out on so much for little Yousuf. I want him to feel as normal as possible and not “special” in these ways. I feel the pain by remembering when I was yanked out of normal class and taken to a special classroom for speech therapy. I would return to class usually missing out on the most fun activity and would feel a little lost or confused, after only one hour away. The other day Yousuf was going to visit his half brother, but I had to stop and make an appointment for Yousuf to get his blood checked. Yousuf thought he was going to get it checked right then. He cried and cried saying he didn’t want his brother to see him with his finger like that with an enormous band aide. I felt as though he just wanted to be a normal boy and hang out with his brother without a handicapped finger due to soreness from the pricking.

I went on to ask her about alternative treatments and she, as suspected, stated her negative opinions on most of them. She did not deny that some of them WORKED but that this treatment plan has had the higher chances of working more than any other method. She did say they are conducting many researches on different and better ways to treat ALL, which will probably come in effect by the end of her career. I told my concern for the long term effects of all this chemo on Yousuf and the increase of other cancers because of it. She said that should be a concern because Yousuf has already proved he can get cancer once so he will always be higher risk for cancers. She said that’s why certain things he definitely should not do to his body like smoking, for example. In short, he needs to take extra care of his body and health.

Health is still not taken for granted as we juggle the concerns of medicine, many trips to the doctor to get poked, and feeling extra troubled with any injury, case of diarrhea, or lack of energy. Though overall, we have achieved a very high level of having little Yousuf back to normal, certain small ailments and low blood counts still play a significant role in our life. Alhamdulilah, experience and adjustments have been made making these “expected” surprises more bearable.


  1. the antibiotic is count surpressant?! are you referring to co-trimoxazole (septrin)..?

  2. It looks like that's it. I researched the name from his bottle, which is the generic for bactrim. According to this site, it's called co-trimoxazole in UK.

    It is count suppressant and I think, that's why we can't give it within 24 hrs of the methotrexate, both at the same time will make his counts drop even more when taken together??

  3. subhanallah! we get busy in our own day to day lives that we forget the rest of the world and the glory of all the creations of Allah. I am so glad that little Yousuf is doing better, its been a while I havent checked the blog since last time I read he was in and out of the hospital - it is amazing to see the difference now where he is home and even going to school. I am sure during the low periods of his therapy you never thought you would be here today with just a weekly medicine to worry about. Alhamdulilah! Although I've been slow in my reading of the blog but he has been in my prayers all the time. May Allah bring complete and total shifah to little Yousuf.

  4. hi again!! Thank you for replying :-).. H's counts dropped to zero neutraphils last week.. he ended up in hospital with a temp. neut count now 0.1.. i checked with the doctors if he should still have septrin, and they said yes.. perhaps it's only substituted when counts refuse to go up over several weeks such as with Yousuf?...
    Masha'Allah you seem to really look into everything..!! i don't really even google leukemia too much.. and i'm a LITTLE EMBARRASSED i didn't realise septrin can cause dropped bloods even though i am a pharmacist?!!!!! think i'd better go back to uni!!!

  5. LOL! I guess the life already consumes us so we leave most the technical stuff up to the doctor's while we focus on the effects and emotional stress it causes. I'm sorry to hear about Hisham. Yousuf was as low as 300 (0.3) but alhamdulilah, he had no major illness or temp. with it. I think just the continued low counts (which means stopping meds) makes the doctor want to eliminate non-chemo drugs that cause low counts instead of the chemo drugs.

    Now Yousuf has some sort of inflammation around his port-o-cath that is concerning me.

  6. i'A hope inflammation better...H's line is now out and i must admit it's better not having to worry about a line infection on top of everything else..would you consider having the port out now? or do you feel the monthly canula's would be too upsetting for little one?