Wednesday, October 28, 2009

We Got the Blues

Do you want to know how to save about 20-30 minutes in the hospital? Try NOT going the wrong way on an elevator. I was on the 3rd floor and meant to go down, the elevator was going up and it stopped on every single floor all the way to like 15. Every single stop people getting off and people getting back on. Then you have to go back down going through the same exact process but in the other direction. I had a nice tour of the hospital though. Seeing every color of the rainbow, every floor is color coded; yellow, green, orange, purple, and blue. The Cancer Center is the blue floor. Whenever I am in the blues I know I am in the right place.

It had been an entire 16 days since we had to go to the medical center. Trust me it didn't feel like it. The time went by fast. And that's okay we will make up for it this week by going three times this week. Yousuf's blood count was amazing with a whopping number of 12.2!! To think he was at a 2 when he got diagnosed. I was shocked at that number and exclaimed, "That's great!" Dr. Margolin is so sweet and honest she says, "No, that's NORMAL. It just sounds great because he hasn't been normal." Talk about killing the excitement. She is a very factual women, not much one to try to comfort you. When she walked through the door of the doctor's office she greeted Yousuf by patting him on the head and said, "Oh wow, his hair is growing back!" And then she turns with a much lighter tone of voice and less excitingly says, "Which he will most likely lose again now." Strangely, every time I see her I feel comfortable right away. She's the face of a rescuer to me and therefore I always seem to feel happy when she's there.

So what's on the menu for this phase? We have three spinal taps -one was done today. We have a doubled amount of dexamthasone (the steroid he was on in the first phase), a new medicine called Doxorubicin, one L-asparaginase shot in the leg (which he will get Monday) -and we have to wait two hours afterward to make sure he has no reaction to, and the same vin cristine and methotrexate he's been getting intravenously. What does that all exactly mean? A LOT of medication, cell death, and low blood counts again. I am mentally leaning over in the football stance ready to play defense.

I'm not sure what my intention was when I asked Dr. Margolin if she recommends any diet to help during this phase. I guess, thanks to friends helping out in the nutrition department along with me induldged in my 'healthy' reading, I already knew. I wanted to see if she knew....or cared. She started to say liver but she doesn't know if that will make a tremendous difference or not. She was typing up Yousuf's precriptions when I asked her. She looked back at me peeking from over the top of her glasses. Remembering previous conversations she said I was doing fine with Yousuf's diet and, in fact, we were one of her best patients when it comes to this. Yeah, I liked the recoginition but it also confirmed what I have been reading and all the bad reps doctors have among nutritionist. They don't seem to care too much about it. As I was reading in a book called 100% Health, they just see a problem and want to cut it out. Of course, in the process of 'cutting out' or destroying, a lot of other healthy parts of the body are being damaged as well. The book says it perfectly, modern medicine is the fastest growing failing business.

When the doctor saw my face when discussing all the new medications and all the possible side effects she included that this phase (which is the Delayed intensification phase)that it raises the cure rate 10%. I was thinking, that's it!? I was not amused. My question is what is the 'percentage' for other long term effects? Doctor's, and other people as well, always seem to throw these statistics at you to make you feel better. Should it always?

When Yousuf was diagnosed, the two doctors stood in our hospital room, telling us that the leukemia type that Yousuf has is 90% curable. That was comforting to hear after hearing two days previously that he almost died. Dr. Stevens told us something else, that wasn't as comforting as the 90%. He said that we can throw these numbers and percentages at you but the bottom line is Yousuf is not a statistic, he is your son. Each child responds differently to treatment.

Not too much longer after that I asked Dr. Margolin why not just give Yousuf a bone marrow transplant in order to save the years of chemo. You know what she said? "Well, first of all a transplant itself is a 10% chance he won't survive it." But isn't that the same 'chance' as him not surviving the leukemia in the first place? She doused me with words of discouragement due to the many and high amount of drugs he would have to take to get the transplant. A small dose of chemo, though steadily for the next three years, seems less scary then a massive amount all at once. Long term...Allahu 'Alim, (God knows).

So while they try to fancy me with percentages, chances, and statistics, I will always remember what Dr. Stevens said...he's not just a person added to a collection of numbers. His response to and how well he does relies on something far greater then that. During the time the doctors play the process of elimination through his course of treatment, I will be working against them working damage control. Cautiously using more then just doctor's medicine I will go back and rely on those 'hearty healthy vegetable soup' type remedies.


  1. Oh my.... there just is no "great" way to handle this disease. And I just don't understand WHY they don't take nutrition more seriously. This goes back to the way doctors are trained in med school -- they are taught "treatments" and not "preventions". If they were taught about how to prevent disease, then they would be out of a job. In the meantime, registered dieticians and nutritionists make relatively small salaries. Dr. Andrew Weil is a pioneer in changing this aspect of modern medicine. His books are fantastic and he has totally different approach to addressing health. He does not discount the need for conventional medicine and treatments, but he advocates taking a more holistic approach to our health in general. Submitted by Yousuf's Nana

  2. Speaking of preventative medicines I think I discovered why there is a Mc.Donalds in the hospital. I was flipping through the Yousuf's binder and came accross the section about research in the long term effects of chemo and other cancer related drugs. This branch of the Cancer center is funded by The Ronald McDonald House. That's McDonalds, right?

    They should do a study of long term effects of eating their food....they will probably find that those kids end up in some other hospital. I guess it's kind of them to fund in something like that since they help put them in there, ha ha!!

  3. Please please start him on some vitamins!!! I know the doc didn't approve but she also didn't disapprove. I can't really imagine vitamin c and cod liver oil being worse than chemo!! :)

  4. I've been cheating just a little :)

  5. SALAAM YUSUF!! my son is called HISHAAM and he has JUST been diagnosed with ALL!! his email is you can get in touch with him! xx

  6. and this is for Umm Yusuf.. i'm Hishaam's mum.. my son is MA 8. he was diagnosed a week and half ago.. a shock but it's amazing how the word CHEMO becomes second nature!! H'S oncology clinic is yellow, i suppose to give a CHEERY feeling in such a daunting clinic!! do you also find how all the parents look at each other with a knowing smile?! like, hey isn't this just horrible what our kids going thru?! my sons lumbar just wouldn't go right yesterday.. so he has a saw back from ouncture wounds...! i will remember little gorgeous Yousuf in my du'as IA!

  7. I'm very sorry to hear the sad news. You seem to be positive about it, mashaAllah. It will be a rough ride but hopefully will make you stronger and better people becuase of it.

    You sound like you're from UK? Is that right? I wish you the best and keep tabs to let me know how things are going!

    Salaam alaikum!
    Umm Yousuf