ZEINiac update August 2nd, 2014: We are half way through phase 1! I wish I know how many phases there are, but relapsed Neuroblastoma is a never ending marathon! We both keep running until one side gets tired or the other gets stronger... We are working hard to be the later! Neuroblastoma is such a vicious vicious disease! The fact that it is not an organ cancer and yet resides in the nerve cells makes its chances of coming back always shocking yet humbly expected in a weird way! The reason why I wasnt able to write a post is honestly that I didnt want to! I had no energy, I had no desire and I had nothing good to share! Everyday was exactly the same! The after math of the surgery was horrible, we are officially traumatized for life! I remember Zeins first surgery last year when he was in the OR for 11 hours and they took out a 3 lbs tumor from his chest and abdomin! At that time we talked with our amazing surgeon Dr. Stein and expressed that we want to see it (the tumor) and we did! We took pictures of it, we touched it we faced it and we looked it in THE EYE!!! Determined to make it loose! We even blew up its picture on posters and gun shot it for hours me and Tamer as therapy! One year later we had to be in the same situation again, this time the tumor is in CNS in the brain (Central Nervous System) where ANYTHING and EVERYTHING can go wrong! A location where our other amazing surgeon Dr. Kreiger did a fabulous job removing as much as he could while being conservative in not harming the actual brain! Main signs we saw was Zein being super tired all the time, constant headaches and obvious confusion! He seemed lost! Doesnt remember what he wanted, out of control in so many aspects and his eye looked HORRIBLE!!! He was quiet! Depressed quiet! Not talking and choosing not to answer back quiet! Totally not Zein quiet! We decided to go full force and examine everything that is possible. He chooses to sleep and doesnt want to react with anyone! The time where we had to keep reminding ourselves first it gets worse before it gets better is extremely tough! We literally had to grab him from the lowest sinking point to lift him up a bit while we ourselves are drowning! The endless nights I cried to Tamer feeling helpless while he tries to put me at ease while he himself is in so much agony and pain! These are the nights.... THESE ARE THE NIGHTS! That I have to remember and say... POWER OF PRAYERS! We had no one but God, kneeled on our prayer mats and prayed our hearts out, woke up every morning missing to hear his sweet voice in the house and even wished for him to fight with Malak at times. We worked our days fast and Malak was back to summer camp where an AMAZING heart felt team where all there doing their best to make her feel comfortable, have fun and ease her fears away. It was very hard on her going alone without Zein, she is used on doing everything with him, especially this summer when she finally got her brother back after 15 months of fighting cancer! She would come back every day with an extra art work for Zein, he was still out and not realizing what is really happening! Tamer and myself took shifts to go to the hospital daily and we barely got any sleep all through the month! After days and nights of NOTHING but praying, Zein spoke! Zein woke up one day on his own, went downstairs, sat with Malak and..... talked! The little signs of improvements are HUGE signs for us! Even though he is still out of energy and gets tired very easily, but looking back at where we were and where we are today... We are always in a blessing and it is an assurance that PRAYERS DO WORK! So where are we now? We just finished the month of Ramadan, my dad (Zein and Malaks grand pa) is here for a short visit from Egypt as well as his aunt and cousins from Texas. All working together to create a fun atmosphere for him. We took Eid day off and enjoyed a low key family day with no sedation, chemo or radiation! We are towards the end of week 3 and his counts have completely dropped! We are back to square one where chemo and radiation are making us need blood and platelets bags again! He started needed transfusions in order to help his counts bounce back up again. His platelets today scored 17 while the normal is 150! His white blood counts were 0.7 where they normally should be 10 ! So I guess this is the time we have to start laughing on how weird these numbers are and how this is our new normal ! We had two sessions of radiation pushed back due to the machine not working on one day and another day off that we took, so we will not finish next week, rather have additional days of treatment the following week. We don’t know yet the status of chemotherapy next week due to his really low counts, so we are playing this one by ear! Zein’s hair started falling again, it is falling in patches now. Shaving his head was an excellent idea to avoid the tragic scene of his thick curls falling again. His hearing is definetly affected and got worse, there is no way to find out if it is due to the three times of Cisplatin that he took last year or the current radiation he is taking in the brain. Cisplatin is one of the worst chemo therapies that cause permenant damage to the hearing, Zein currently has permenant high frequency hearing loss and in a few weeks we will take him to check hearing aids, we tell him: you will have super sonic hearing, and from now on we won’t be able to whisper around you or plan tricks, You will be able to hear it all LOL. He gets frequent headaches that floor him down literally! He feels he just needs to lay down and keeps asking dad for head massages. After this phase of treatment is over – in a week or two-, we will have a full scan evaluation, where we hope and pray and plead our case to God that the tumor has responded and that we can move forward to Sloan Kettering in NY with no hidden surprises. We don’t know much about Sloan yet or the clinical study we are about to go through, but a very small part of me is excited about changing scenery for all of us. We will leave our home, work and school for the period of treatment. We don’t know what to expect there or how our lives will be, but we know that being together is all that matters and inshallah God got us through what was before he won’t let go of us at this time. Most of you asked how to help us, and we set up a small amazon gift list which I was amazed on how quickly it got purchased and items are being sent to our house weekly elhamd lelah. Thank you so much for that. Katie Quintas does a fabulous job keeping up with me on our needs and update everyone. So a shout out to Katie and her great work following up on my family while she herself is going through a lot after the passing of her dear husband a few months back. We are definetly not in the best positions these days, but we are still better than others. We are surrounded by people who pray for us and think of us, and this is all what matters. This journey has brought so many feelings and emotions on to us, and showed us the true meaning of friendships as well as the true identity of some so called friends. A few months back and probably around mid way with Zein’s first battle with cancer I decided to start recording all my thoughts, our experience, the lessons we learnt, the do’s and don’t’s in a book! I was working on wrapping up this book soon, but God decided to add a new chapter to it. So wish me luck in finishing this project. As always we ask you to pray for us for smoother days ahead of us, for better tolerance in treatment, for a stronger body, better appetite for Zein and God’s blessings and peace surrounding us. #powerofprayers #zeinvolution #fighton
Posted on: Sat, 02 Aug 2014 17:17:06 +0000
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