The term déjà vu is French and means, literally, “already seen.” Those who have experienced the feeling describe it as an overwhelming sense of familiarity with something that shouldn’t be familiar at all.
Pre 2011- kids don’t die. Post 9/11/2011- Kids die.
Before Gabby, my children were indestructible in my eyes. I never feared they would die, or be gone from this world before me. After Gabby passed away on 9/11/2011 that all changed. When you lose a child to cancer your view on death changes. It happens, and there is nothing you can do about it. We help so many families, have met so many children that have passed away, suffering families that are devastated and broken. Death is a part of life now, I want to feel bad when I hear of a new death but I realize this is reality and it happens now. I would give anything to not know that, to be ignorant to the fact that pediatric cancer can take my children.
My 96 year old grandmother died this past Christmas Eve, She helped my single mother raise us. At her funeral I sat there and couldn’t come up with any tears. She lived a long and amazing life. I have run out of tears it seems. I can come across as cold and uncaring, A defense mechanism I guess. I just realized that she had 96 years to live a very long and full life yet others get such a short life and they have been cheated.
This brings us to the déjà vu part of this blog. Ever since Gabby died we are paranoid that the monster Cancer will take another one of our children, before you say “you can’t live that way”, we know that, but it is the reality of what goes through our minds daily. It’s not something we do voluntarily. It sneaks in; we get a grip and force the thought out of our head. The last few months we have noticed Xanders smile and left eye look different. His smile doesn’t open equally on both sides especially in pictures. The same happened to Gabby especially in pictures prior to her diagnosis. We didn’t realize this was a sign that she was sick until it was too late. DIPG stole her smile from her and us. Xander had a well check with his pediatrician this past Wednesday. We decided to bring it to the attention of the doctor and see if we were over reacting or if we had a valid concern. When Carolynn brought it to the doctor’s attention, she noticed it as well: facial asymmetry she called it. We were told to consult with a neurologist and get him screened. I called the Neuro oncologist that worked with Gabby to get some recommendations from her. She told us she would get a team together and get us in as soon as she could. We got a call to set up an appointment for an MRI on Friday morning, just two days later.
On Friday we loaded Xander into the call and drove to the Children’s Hospital of Philadelphia for his MRI with fear in our hearts of what they would find. When Gabby had her MRI, they gave her a drug they called” giggle juice” to help her relax before they sedated her. She acted silly, almost drunk. We thought it was amusing and videotaped it. We didn’t know she had cancer yet. Then they gave her a drug called Propofol. All I know is we were told it can burn when administered. When they gave it to Gabby she cried and screamed she wanted to go back to the room. She cried and then passed out from the medicine. Afterwards they wheeled her out for the MRI and lumbar puncture. Carolynn and I went downstairs to eat and talked about how surreal everything was. When we went back to get her she looked so peaceful and we took pictures of her during this time. The nurses told us that they were no longer going to do the lumbar puncture and we were ready to take her back to her hospital room. I knew then something was wrong. Why stop looking for a problem unless you already found one? Later that day, we received the devastating news that she had terminal cancer.
Fast forward to Friday. We are in CHOP, they give Xander the “giggle juice” no cameras were out, no smiles where there. We were living the nightmare over again. When they gave him the second drug he started screaming: “I want to go home, I want to go home” Then he went limp, spit coming out of his mouth. Carolynn was crying, I couldn’t even reach out to hold her, I went numb, I couldn’t move, I flashbacked to my little girl screaming for me to help her, now it was my son. We went downstairs after they took him. We ordered breakfast, I graded tests, and Carolynn did foundation work. We didn’t talk. Eventually Carolynn started to worry about how long it was taking. Was there a problem? Did they find something? Are we going through this again? How do we tell the girls they are about to go through it again. I think we both aged several years again in that hour and a half.
While Xander was in the MRI, the nurse was paging the Neuro Oncologist hoping she could read the results and let us know something before we went home. We went back to the room where Xander was recovering and watched helplessly again as he tried to recover from the drug used to sedate him for the procedure. We were told we could go see the Neuro Oncologist right away, we were sent to the Oncology floor. Different building but same department to talk about our son. She immediately told us there were NO signs of cancer, His brain is perfect. There is one thing that we have to monitor, however it’s correctable and more importantly. NOT CANCER.
SO here we were, our son doesn’t have cancer! The night before I had played it over in my head going the other way. What would we do, how could we go through it again? And f@#K Cancer! Why did this happen, why do we live in fear, when will it be over.
The truth is we are lucky; we have only lost one child to cancer, for now… How messed up is it reading that? Imagine writing it about your family! However we have heard of families that have lost more than one child to cancer. I can’t imagine what they go through on a daily basis.
That’s why we do this! That’s why we fight!
While we were at CHOP and they were getting Xander ready for his procedure the Child Life specialist offered Xander toys to keep him occupied. He didn’t want to play, he didn’t take her offer for cars, blocks, or anything else. She offered to bring in a book. His eyes lit up. She brought back a seek and find Paw Patrol book and took all his attention away from everything going on in that room. He was so focused on looking for the Paw Patrol guys to worry about getting an IV put in his hand. He cried for a minute but the book brought his attention back and he stopped crying and was back engaged in looking for the Paw Patrol guys. Books can really make a difference to these children. This is a first hand experience of how they can use them to help these kids forget what is going on and give them an escape even for just a few minutes.
I urge you to go to amazon right now and Give 5! Order five children’s books for children, ages ranging between newborn to18. Help us fill the libraries in as many children’s hospitals as we can. We are asking for at least 5 from everyone because that’s how long it has been since we lost Gabby. 5 years. , 5 years of living in fear with a smile on our face, hiding our fear, being brave for everyone that needs us. Please go to amazon now, look for the Get Well Gabby Foundation on Amazon Smile (the foundation gets a percentage) and have the books sent directly to the foundation at The Get well Gabby Foundation PO Box 555 Ocean View, DE 19970.
Help us create an escape for the warriors fighting this, help us make a difference in the fight against a truly evil enemy.
I started this blog with the definition of déjà vu, The part that really got me was: “an overwhelming sense of familiarity with something that shouldn’t be familiar at all.” Just let that sink in. Nothing about the world of Childhood Cancer should be familiar yet it is for us and to families like mine. We live it daily. Help us make sure others don’t.
Believe in 5,000 books collected!
Believe we can make a difference
John (a dad)