Friday, July 10, 2009

Day 17: The Usual

Eight hours later and after a very 'drugged' little boy finally gets something to eat we are on our way out the door of the hospital. Yousuf was shaking tremendously from the anesthesia but it was not stopping him at all from inhaling chicken nuggets and waffle fries on our way down the elevator. I realized today that there is such a thing as "Elevator Wars". This morning I decided to be the one to grab coffee across the street realizing that I could get a way with scarfing down a chocolate chip coffee cake while away. We usually try to not to eat or drink anything right along Yousuf to TRY to make it easier for him. I think the hardest part for him is starving from all the steroids he gets and than not being able to have anything but clear liquids for almost 20 hours! On my way back it took me entirely too long to catch an elevator going up that had room for me and Omar's stroller. This other lady and her son and I were literally racing against crowds of people who always managed to hover in front of the elevator that did go "bling" and open up. People didn't realize we had missed three open elevators before. People don't care, they just come, see an elevator and rush inside. Finally, after a very long time and a now cold cup of coffee (for Abu Yousuf) I think I may have rolled over some one's foot to try to force myself through a crowd not to miss yet another elevator going up. I held it open and yelled over the crowd of the people for that other poor lady with her little boy to hurry up (as I made room for her). Alhamdulilah, we made it! I reached upstairs to no longer see them in the waiting room. I asked the front desk clerk where my son and husband were. There was no screaming or crying from the room she pointed to, so I was certain she was mistaken. As soon as I peeked inside, Yousuf began to wail.

Even though this whole thing has been difficult with these long hours jumping from one waiting room to another, I have found pleasure in small things now. I find myself getting excited for my turn to go down stairs and have my break. However, now I am getting tired of the same coffee shops, the chic fil A, and the gift shops in the hospital. I wish the food court area was set up like a circus, where they can just take there tents down and a new "show" can come with different exciting things to choose from.

I'm wondering if there will be a day when we go to the hospital or give Yousuf his medicine and he just says, "Okay!". Until then he is making sure to torture us as we are torturing him. Today we were squeezed in for the sedation since it was normally supposed to be Wednesday but since he had that allergic reaction was put on stand by for today.

The doctor called back a little later after leaving the clinic to tell us the results of the bone marrow test. She left a message saying it was good so I am assuming from that that his blast has cleared from his bone marrow, insha'Allah. Next week I am happy to know there is no bone marrow test allowing this hungry pop belly baby to eat and drink to his hearts delight next appointment!


  1. Assalamualikum warah matullah

    Jazakillahkhayr for your daily updates. SubhanAllah what a brave little boy you have there mashaAllah.

    May Allah Subhana hu watala make this time easy for you all and cure Yousuf with a cure that leaves no illness ameen.

    Wassalamualaikum warahmatullah

  2. Assalaam Alaykum

    I am so glad you have started a blog, it will help you and others in countless ways. I many times thought of starting a blog but am not gifted in writing. InshaAllah very soon will come the time when the chemo becomes routine and not 'torture'. We now go in for the the spinal tap and lumbar puncture every 12 weeks, and MashaAllah Sumayah looks forward to it, she gets excited about the anathestic etc....and then we walk out of the hospital as if it was a routine trip to the doctor's.

    May Allah make it easy for you all

    Umm Ibraheem

  3. Thank you Leslie for the update. I can imagine that it's hard for all of you to be in that hospital alllll day. The days are going by. They may not seems fast. Some days are super slow. But we are gonna look back and see how time flies and little Yousuf is gonna be all healed and shining.
    -Shannon in Austin
    It's almost time for "someone's" birthday :)

  4. Assalaamu'Alaikum

    My name is Jenna and I am from Qabeelat Haqq. SubhanAllah I understand what you are going through, well in some ways...

    My daughter was born with congenital heart disease and from day one she had to stay in the NICU and she was airlifted to the hospital farther away. Since she was born; she has 3 open heart sugeries, countless test, xrays and exams, and catherizations procedures.

    Your story has brought tears to my eyes because I can remember going through some of those things you mentioned. Having to watch your baby get poked and jabbed, it hurt the most when having her woken up from her sleep (when I know its her chance to escape reality) to have to have blood, or meds, or a test.

    My husband could not always be with me either. I dont think I was ever such a light sleeper as I was during those times, a single sound of "mommy, or crying" coming from her bed sounded like the loudest alarm.

    Also having to be strong (in front of her at least, and also when I would see her two brothers at times was excruciating)

    She is now an amazing 4 year old child and from this experience it has helped me to appeciate life and not take anything for granted Alhumdulilah.

    Sorry about the length of my "comment" but I just wanted to say....

    I understand


  5. SubhanAllah Jenna...Thank you so much for the story. It sounds like you have been through a lot, too. Masha'Allah for your courage and strength you gained because of it. I'm amazed to meet people like you and def. have a greater respect and appreciation for people like you. Thank you.

  6. Umm Ibraheem...I have already benefitted from your writing! You have helped me a lot on what to expect and therefore how to handle things day by day and step by step...

  7. Thank you for starting this blog. It is a great reminder for us in many ways. You are always in our dua'as

  8. I read this blog every day, Leslie. All of you are in my heart. The beauty of your words as you write of the experiences that Yousuf and all of you are enduring. If you need me as well, you call. My love, Aunt Irene