I wanted to apologize for not updating Enzo’s website in May. I have had a lot of concerned calls and E-mails from so many people about his progress recently. The truth is we have had a really rough month and emotionally I needed to sort of pull it together and find some answers and some sort of “peace” inside myself before I could send anything out. It is very hard to find the right words to communicate what we have been going through as a family trying to help Enzo get through his treatments while we are struggling to understand why he is the ONLY one left out of 11 small children we met at the hospital when he was first diagnosed. When I say it is beyond comprehensible to see some of the sick children we have seen and to see them struggle the way that have, it is even harder to comprehend that one by one they have all passed on. As a Mother it is TERRIFYING…On so many levels. I keep searching for “evidence" (as my husband likes to call it) that there are other kids making it out the other side. I have spoken to Dr after Dr and the nurses to try and help me feel more confident that things will be ok. I keep getting the standard percentage speech in return. So the bottom line is no one can promise us anything, I just have to keep moving forward everyday with the faith that Enzo will ride this wave out and he will make it. If my faith has ever been tested, this is it.
Wed early in the morning Enzo’s (last) “hospital mate” Liam lost his fight with Leukemia, after a long, tough and brave battle. We are grieving his death like he was our own. Some of you will recognize his name from past E-mails or even the news. His amazing mother Lisette was able to write (on caringbridge) about his last moments of life in such a beautiful, touching (and heartbreaking) way. Her courage has helped me so much on this journey because she has been so steadfast and strong through it all. And a part of me feels guilty that I can wake up next to Enzo everyday and these other Mothers cannot do the same. ..it is ALL so unfair.
Everyone has their own special way of coping. Adrian (Enzo’s Papa) has gotten through the past year, sort of in a state of denial about how serious this is. He has been able to just go through the motions of the hospital, the chemotherapy and the surgeries with this attitude that it will be fine and there’s really nothing to worry about, but this week when Liam passed away it hit Adrian like a ton of bricks. Enzo makes it easy to forget how serious his condition is too, most of the time he doesn’t look sick, he doesn’t complain and he has figured out little tricks to hide it for the most part…So I get it. But I can’t forget, I wish I could. I still have never come to grips with how a parent loses a child and goes on. And quite honestly I NEVER personally want to find out.
Enzo is incredible smart and has 1,000,000 questions. He has been asking a lot of Q’s about heaven (right now he thinks is a person and he wants to kick it’s butt and get his friends back!) He knew Liam was going to pass the night before it happened, he told me. I truly believe kids know EVERYTHING. I feel so awful for him because literally every friend he knew from the hospital is gone. I made a point this past 6 months to try and seek out playmates for him that do not have cancer (for obvious reasons.) We are trying to keep his life as “normal” as we can and it can be a little tricky because it is still too risky to put him in school, or have him at certain events, etc… His “brother” Chris ( a friend that he calls his brother) was supposed to come over last Thursday and had to cancel because his Mom got the flu and last night I realized Enzo thought Chris had died because he didn’t show up. I just felt awful. This is the sort of thing most Mom’s don’t have conversations about with their 4 year olds, but Enzo’s life has been touched by so much loss, he has a completely different perspective then most lil guys and that part does break my heart. Also personally, I do have to watch carefully my own emotions because Enzo and I are so connected and he feeds off of my moods and it has been a little tough at moments to sort of “act” my way through this week. For whatever reason I thought Chucky Cheese was a great idea on Thursday and then I sat there hiding in the corner bawling my brains out for 2 hrs. looking at all these cute lil boys and thinking about Liam and what a complete rip off that he is not with us anymore. For all the “he is in a better place now” comments, sorry that does not help me AT ALL.
As far as Enzo’s clinic appts go, he has had some issues with his gallbladder function and we had an ultrasound that confirmed his gallbladder is not pushing the vancristine through his body properly. We were about to get a new medication to help him out, but we had him rechecked and his belirubin levels improved, but now his liver enzymes have increased by 70 points (7 times the average number-SCARY). There is currently nothing we can do about it right now. He gets rechecked in a week, when he is scheduled for his spinal puncture and we should have a better idea of where he is at then. He is still getting taller and has gained a few solid lbs in the last month, so that is reassuring. There seems to always be a trade off with the numbers and that is just something we have to get use to. One number decreases and another number increases. His over all number has also decreased again from 1200 back to 750, so I am just trying to stay away from public places and wash his hands as much as humanly possible! The Dr talked to me about “after effects” from the chemo and what we might have in store. There is a range of things that can be challenges later from bone density issues (hip and knee problems) to learning problems, etc…I am choosing to put all that info. on hold for now and deal with the treatment first and any issues as they arise. They can’t alter the amount of chemo now anyway (even with the liver numbers increasing) because the risk is too high for relapse so we will just forge ahead…FINGERS CROSSED.
I am visiting my cousins in July on my quest for more “evidence”! Jake my cousin’s son was diagnosed with leukemia at the age of 3 (just like Enzo) and he is now in college and thriving. As far as I know he has never suffered any “after effects” from chemotherapy and they still have the same protocol, same drugs (17 yrs later) etc…So I will see. I need this! I know everyone has their own path, spirit and their own individual will to overcome things, but it will still make me feel better to see (and know) a REAL survivor! If anyone reading this has more “evidence” of success and survival please forward it to me!!!
I promise to update in a week after his spinal puncture.
Until then, please visualize with me: Enzo riding this wave, on a surfboard that says “DUDE” laughing and enjoying the ride! (nurses idea, I think it’s great!)