Here I am sitting on my laptop after sending both my men (husband and son) off to the hospital for yet another time…

For over a year now, Zein goes to the hospital to stay for at least a week every month to get treatments attacking his cancer, sometimes two weeks and sometimes a whole month! Every single time I pack the bags, and say good bye I think it would get easier or at least I would get used to it, but no! The house feels empty and sad every time… I do cuddle with my princess Malak whose spirit is enough to fill a room, tuck her in bed, ease her tears that never fail to take place every time her father and brother leave, pack my bag and get ready for another “hospital shift” tomorrow where I take off to LA myself and switch with Tamer…

Could this really be our LAST time to pack our bags? Our last time to sleep on a hospital bed, Our last time to snack on crackers for days, or smell the scent of alcohol and sanitizers all day long? Our last encounter with not being home and being disoriented with time! Could this be really our last time to say good bye to our 4 west nurses, take a final picture and only visit them to say hello with a healthy cancer free son? Our last time to walk the quiet purple hallways, wearing the green name tags identifying us as parents of sick kids! Smiling at each other in the hallways and trying to comfort each other? Our last time to breathe the high pressure filtered air of the hospital, or hear the terribly annoying beeps of the IV machine? Could this really be Zein’s last inpatient treatment where after it, he wouldn’t need to ever leave his house again, or go through these painful IV medications? I don’t know! I know that this is our last cycle of immunotherapy, the end of this clinical study and supposedly a celebration to what seemed to be a farfetched dream!

When Zein first got diagnosed over a year ago, and when we were introduced to how long, hectic and intense the regimen is for Neuroblastoma, the thought of reaching cycle 5 immunotherapy was so far that seems almost impossible! But here we are! We survived 14 months of cancer treatments, 7 rounds of chemotherapy, high dose radiation where we had to leave our whole city and live in a hotel for two weeks, one month of isolation and high dose chemotherapy, stem cell transplant, 12 days of daily radiation, 9 surgeries, and 5 cycles of immunotherapy and Accutane! Phew!!!! That was exhausting to type!

You know what I did when this all started? I printed a countdown calendar, and a check list of treatment phases, the sight of marking each phase off was another reassuring feeling that we will get through this, so what if we have to go through 18 months of pain for our son, so what if they were 18 years even! It is our son! Our pride! Our gift from God, and whatever it takes… we will do it!

But I have to be honest with you all, we are tired! We are scared! We are exhausted and drained! Zein looks so tired, he can’t even open his eyes widely enough for the past 3 days, my poor boy is drained! The fact that he didn’t improve for a long time is an indication that the cancer cells are resilient and possibly deceitful, and clear scans don’t necessarily mean a cancer free body, yes we will use the words (cancer free) every time his scans come back clear don’t get me wrong! That is the one thing we get to say and enjoy out loud. But does it really mean his body is cancer free? Does it really mean our life is cancer free? The verdict is in and the decision has been made, doctors decided that Zein needs to be in treatment for another year! Immunotherapy is NOT the last phase of our treatment! Cycle 5 is confirmed to be our last cycle of immunotherapy, but not our last phase of treatment. After that we will go through a week of scans and full disease evaluation, and then decide what kind of treatment he will continue to take. If his scans came back clear and NED (No Evidence of Disease), that will be a good indication and supposedly he will be on the least of all evil (oral medications at home- which trust me from the options we heard are not happy!, but oh well if we will be home taking them, then I can’t complain), then the second case scenario that if God forbids his scans detected any disease, then at that time we will take a tougher route and a more intense course of treatment. We just have to wait and see!

Jumping to conclusions and thinking days and weeks ahead is EXTREMELY hard! Not in our life style really where we are forced to live 15 minutes at a time! Not even day by day. So for the past few weeks we were overwhelmed with options, we decided to take matters into our own hands and extend our intensive research further. What other options do we have for Zein? What if conventional medicine is stuck! Hits a brick wall or can’t help anymore! Also how much more can a 7year old body handle from toxins and crap infused inside it? We did what any concerned parent would do, researched other options, filtered the hocus pocus ones, screened and filtered natural alternative and integrative treatments. Started our own interviewing process to see what other forms of medicine can offer to help supplement, boost and support Zein’s body? We need to detoxify his body, as well as support his immune system against cancer and more. We were disappointed by a main encounter that was after our money, played on our emotions and could care less about a cancer kid! If anything, money seemed to be their main priority. But we are not giving up and we strongly believe that with our research, and together with our oncologists we can come up with a regimen that would help him come back to his normal self soon, detox all the side effects he is undergoing and fight even stronger!

Isn’t he cancer free? What’s with all the fighting Youssef Family? Seriously! I KNOW! I HEAR YOU! LOL you guys must be super bored and tired of all the “fight on” statements, but by now it is a fact that cancer will always be a part of our life. Zein has an extremely high chance of relapse, and we will be living to pray that we can pass these few years mark watching closely those damn cancer cells and trying to always be one step ahead of them! How could cancer grow that fast again? I honestly don’t know! But what I know is that three weeks ago I ran into a family who broke my heart, because their son relapsed DURING immunotherapy and even though he has been 8 months into remission. So it is NOT rare and it is NOT unique and it does happen! Neuro-Blastoma is one of the toughest and worst kinds of cancer. And don’t even get me started on Cancer itself!!

So here you go, that is what we have been doing since our last hospital stay. Working on getting him stronger, fighting to feed him, flushing lines, controlling medications and moving on as if cancer doesn’t exist daily, striving to organize our thoughts, screen the options and put our trust in God that he will never do anything bad! We won’t have any updates about “what’s next” until May, so we will definitely keep you all posted then. But guess what is happening in May? It is Zein’s 7th birthdaaaaaay. Not just that, but a possible celebration for removing the freakin’ central line in his chest, enjoying a normal summer with water guns and pools (did you know that Zein was not allowed to get wet since diagnosis because of the device in his chest? YUP! But that’s a story for another day LOL)

PHEW!!!! That was a long update, for those of you who know me, I tend to be always sarcastic, it’s my defense mechanism against all this and I like it. It works... Well most of the times! Some asked me to start a blog, I will look into this but I am not sure how hard it is to collect the past updates and post them for an organized reference, if it is too much work, then you are kinda stuck with my long FB statuses.

Finally, I have to say the words of encouragement, concern and love we receive everyday are beyond amazing! Your emails, texts, gifts, donations and much more are yet another proof that we are all connected in this place called life. We might look differently, believe in different things or embrace different religions and faith, but at the end… we are humans!

We are who we are and challenges are just a way to show us that God connects us for a reason. I might never know why God chose Zein, what his reasons are… It is a painful question! But then someone stops me saying: Hi you don’t know me, but I do! I have been following Zein’s story and you guys are amazing, you are inspirational. I pause and think: inspirational is such a big word! Amazing is such a deep meaning! Are we really amazing and inspirational? Might our way of handling this be God’s way of teaching us and others something? If we are a tool for a cause, then I sure do hope and pray that we keep getting our strength to fight and our motivation to never give up from this amazing and inspirational young man with a contagious smile and a spirit that teaches us all a lesson every day… Zein Youssef!

Pray for Zein, pray for us and smile…. The fight is ON!

By: Radwa Moussa-Youssef