I’d say 15 minutes later the doctor announced that the Hemotologist on call was coming down to talk to us. I started to realize that something was really wrong...I said to my husband, “you stay here, I’ll go get pajamas for us and I’ll be back in a few minutes”. Now I KNEW something was SERIOUSLY wrong. I FELT it. My legs barely carried me to the car.
The next days were spent in the PICU at the Valerie Center, and then on the floor of Morristown Memorial Hospital, they should be a blur, and I guess at the time, they were, but now more than a year later I remember every single minute. It is my hope that we can prevent other parents from suffering the same we did. It is also my dream that someday, with enough support, our Government will step up to the plate and start properly funding research for all cancers, not just the ones that make the pharmacutical companies rich.
We were told that we had to be admitted to Memorial Sloan Kettering Cancer Center in April for a bone marrow transplant. (We were actually given a choice between CHOP and MSKCC, we chose MSKCC). We were told that due to the severe nature of AML which happens to be the “adult” type leukemia, there was no other chance. This leukemia will come back and kill him if we do not find a donor and soon. (This is another reason to share our story, we believe that if people know how difficult it is to find “a match” that more people would ‘register’.) While so may of us, myself included think we are heros for checking for “donor” box on the back of our driver licenses- nobody realizes that you can save a life while you’re still alive.
Our donor (or Angel sent from above) came in the form of a 58 year old man currently residing 'somewhere' in the United States. You think, no big deal right? Wrong. The registry has six million people willing to help and there was only one match for Julien. Imagine the odds of needing a donor of your own, or for your child? Juliens transplant took place on June on 29th, it was the most exciting moment of my life- my anxiety level was so high that as scared as I was, I knew that we had to celebrate, (this is my defense-) The transplant is actually "stem cells" taken from the blood of the donor and given to you via special IV which goes directly into your blood stream. After the "tranpslant" all you can do is sit back and wait. We were told that we could have 'this complication' or 'that complication' and- NOTHING. Julien was still dancing on his bed, flirting with the nurses. We left the hospital a few weeks after transplant. EASY. We had to keep Julien away from all of his friends which was very hard because he missed them so much, but now he had NO immune system. Time progressed and things got better.
I woke up on October 15th and cried, I realized that we had made it to Julien's 4th birthday- there were so many days when we just didn't know if we would.
Less than one month later we received the second worst blow of our lives. The leukemia was back, stronger, smarter, and more aggressive than before. Your choices: do nothing and enjoy weeks or perhaps months of a ‘quality’ life, or risk undergoing new chemo regimens that may or may not work, that he may or may not survive, hoping that IF they can get him into remission, that he won’t die of an infection before we can find a donor to do another transplant.
We headed to the saddest happiest place on earth. Disney World. I can still see my husbands face when the doctors agreed that I should keep my promise and take Julien, this was the one thing that kept me going, making promises, and keeping them. I promised Julien back in March that as soon as this was over, we would go wherever he wanted, he chose Disney...
It was hard to confront my fears, but I had to. I asked the doctors what they thought, they both agreed that we should make the trip as soon as possible, it was then that my husband added "no, I want to wait until he's better, let's wait until next year" again, I held my breath- knowing that someone would have to explain that there might not be a next year.
There are no words to tell you what Disney was like, who cared? You walk around like zombies, with a child who is really too sick to run around, but yet you do everything you can to try and make it last. We ate Thanksgiving dinner in a restaurant buffet and could not fill the empty spaces in our hearts. Then we went to Miami- to see our friends, they had a big party for Julien, and I mean BIG....it started with the magician, and continued with the face painters, and the superheros, (you should see those guys in tights!!!!) and the children sang songs that they wrote for Julien, and played in the bouncy houses and watched and participated in the karate show....it was the most spectacular party, if I didn't know why it was taking place, I really could have enjoyed it, but I can tell you from the beautiful photos sent to me later, Julien did enjoy it, it was his best party ever! We had one more month of free time (out of the hospital) before the leukemia took over his body completely, we went to healing masses, prayed every minute, consulted every doctor, analyst, and scientist imaginable- even sending Juliens DNA samples to Italy - then we held our breath....one last trip - we want to go away for New Years Eve....back to Miami, good weather, good friends, some family- perfect right...
On December 30th we went to a local Miami hospital for our checkup ( a condition of our trip as per NY Drs.)
It wasn't a good visit. The Attending doctor freaked out when she saw Juliens labs, yelling at my husband and I, telling us that Julien would likely not survive to make it back the following week, that we should leave immediately IF we could get an airline to take the risk. I thought I would lose my mind right then and there, I first asked her to leave the room and not say anything negative around my son and while my husband was talking to the doctor (while she was now on the phone yelling at our dr's in NY) I picked up my son, put him in the stroller and walked right out of the emergency room. I couldn't stay. I promised that I would take him to toys r us. I keep my promises.
We had an amazing New Years Eve party, although at midnight I was in bed with Julien crying my eyes out. We were scheduled to go to the hospital in the morning ( 3 hours later) for a transfusion and then back home, we had one more party to attend, for my fathers 70th birthday, then we were back in the hospital.
I woke up on January 18th, put on my best clothes and went looking for my friend only to find that someone else had been put in her room, I approached the nurses station to find out what had happened and I saw the nurses coming towards me, scared, and sad- "we tried to stop you from going there" they said. I turned and headed for the elevator. It's not possible, I saw her last night, yet there it was. only hours after I had seen her, this beautiful little girl had died.
I went back to my room, the nurse came in, they wanted to begin Juliens chemotherapy today. "NO, NOT TODAY" I DON'T KNOW IF I WANT TO DO THIS." I CAN'T DO THIS TODAY". I was more afraid than I had ever been. I felt like I would be responsible if we started and something happened, we prayed, I BEGGED God, for help. I did at some point talk to a friend who explained to me that I needed not to be afraid of the chemo, but to embrace it. FEAR is the one thing that can hurt you. BELIEVE that he is well, SEE HIM WELL, visualize him older....and that we did.
On January 19th- a year ago today, we began our next chemo regimen, only to find out weeks later that it had failed. We were not right back where we started, because each time you use a drug, you cannot go back to it, your body knows how to beat this one, you need the element of surprise, we were running out of options, and our doctor, who we know came to care deeply for Julien advised us not to seek further treatment- this was the worst day(s) of our lives. Even after our transplant team doctors told us to continue and NOT give up, we were just devasted. and all this time, Julien was having 'visions' of God telling him that it was time to come back. Finally, I had to ask, when Julien told me about the 2 year old boy that was hanging around his room (an angel) I gathered up the courage to ask if the boy wanted Julien to leave with him, and Julien responded "no maman, I asked him if I was supposed to go with him when we were finished playing, but he said that God and Padre Pio had decided that I should stay here with you" can you imagine the relief? whether or not you believe in this, believe this, my son told me days before he was diagnosed for the 2nd time that the leukemia was back, that God was crying, and that he would have to leave us.
We have been to the end of the world and back...there is so much more, but not enough space on these pages. If you are interested in hearing more, leave us a note on the Friends of Julien page and we will update you.
for now, thank you and God Bless you all!