Enzo's New Normal

Cancer is a beast that my family has to defeat. Below is a post from a group that I belong to and it summons up this moment for us. I appreciate my family and friends that have helped us along this journey. Thank you!...............................................................................

What is it like to have a child diagnosed with cancer?
It's hard to put into words all of the feelings and life changes that the word cancer brings.
I've always been a photographer at heart, so pictures speak louder than words for me.
This long, seemingly endless staircase is what having a child with cancer is like.
It all starts at the bottom of those stairs with your ears ringing with the echo of the words, "YOUR child has CANCER". It bounces off the walls of that narrow staircase and the echo hits you over and over again.
Then your climb begins. Looking up from that first step its a dizzying unbalanced feeling... how will I ever get her to the top?
You look down at your child and you do what any parent would do, you hold their hand and up you climb.
With all the fresh adrenaline surging threw you as you make that fight or flight this upward journey and you're not willing to find out what the cost of stopping might be.
Now you're many stories up in this stairwell.
At this point reality is setting in. You now take more notice that you are not alone on this climb.
There are other parents making this same exhausting climb as you. They're holding their kids close just like you.
Some are just a few steps ahead or behind you. Some are stories above you while others are just taking that first step.
No matter how strong you may be, you're tired. Physically and mentally drained.
There are no elevators to get your child to the top though, so you climb on. There's hope at the top... the promise that if you can just get them up there they could live.
There's also no stopping either. Once you start this climb, if you want to get to the top, you don't stop. So that means those tired little legs attached to the tiny hand you've been grasping onto need help.
That's when you pick them up and keep climbing... through the tears, through the screams of your tired aching body you keep putting one foot in front of the other. Through your child's tears, pain, fears and anxiety you press on.
At some point you start to notice some of those other parents on this climb are passing you on the way back down. You may even let your mind wander to the time when that will be you and your child.
Then it hits you like a punch in the gut... some of them are walking down alone. Their arms are empty.
You hold your sweet child even closer. You kiss them and hug their fragile, frail little bodies and hope you can get them to the top before they wither away in front of your eyes. You dig deep to find it in you to keep going for both of you.
The worst part of all of this?
Even if you can get them all the way to the top there's no promise that it's the end. That they will never have to do this again. That you will never have to make them climb this stairwell again.
And that stairwell is full.
Its full of exhausted parents on every level.
Its full of kids who are fighting an invisible monster instead of fighting with their siblings over toys at home.
It echos with the sound of both joy and pain.
Its not a guaranteed one time climb either. Some will make it to the top only to be told halfway back down they need to start climbing again.
This is what having a child with cancer is like.
It's a steady stream of parents and kids moving in both directions.
It's a congested stairwell in a tall, dark, very old building. With all these families climbing every hour of every day and no one on the outside of the brick and mortar walls sees them unless they happen to pass by one of the very few windows along the way.

Written by Jessica Martinez

Healing Touch is a program that is offered through CHLA to help patients and care takers heal through energy work. One of the energy healers send me the following link to help one stay centered and grounded and to allow your enegy to flow freely.

Chakra Connection for Self Care Chakra Connection for Self Care This instructional video and guided meditation uses healing energy to support and enhance your energetic well-being. Chakra C...

Today, we have entered into Interim Maintenance #1, which is the third part of his therapy. So far he has had six lumbar punctures (LP). Everytime, he goes under it is never easy. I always anxiety because I have no control of the outcome and can only hope that all goes well. For the most part he wakes ok but sometimes he wakes up grumpy, it is just part of the treatment. My world stops until he wakes up from being under. I can not explain the amount of anxiety and dread that I have. I feel like a bad mom because I can’t be with my other two at home as well. I am beyond thankful that my sisters and mom have been able to help out. COVID has not made this experience any easier but I am sure that Sofia and Lincoln would prefer to be at home playing with The Switch.
Words such as return, how important ANC levels are for the next part of his treatment, oxygen levels, slow heart rate, fevers as high as 110 ( I never knew this could happen but it did a couple of times), reminding the nurses that when was the last time he went to the bathroom are normal to me, weekly appointments are normal to us. I try my best to not let my emotions show, he is still too little to see that mommy has overwhelming moments. This is a lot for anyone to go through in such a little amount of time. I am no expert by any means but I feel comfortable deaccessing him and giving him chemo at home. We still have a long journey ahead of us but I am confident that with the support that we have we will get through this. Shout out to my hubby who has taken over when I am beat and give Enzo his medicine when he has a tough moment. For a five year old boy, I am amazed at his riscilliance and adapting to his new normal and that his superpower is that he can swallow pills. Whose kid is he? I didn’t learn to take pills until I was in junior high.

After waiting for two weeks, his ANC levels are finally up. Now we can officially enter s the third stage of his treatment.

We are back at the hospital. Originally we came for chemo but they ended up admitting him. His fever and heart rate were too high for the doctor to send us home. Which is not good especially with his compromised immune system and they are still trying to figure out why. So far they don't know. I have to say that this has been a rough week for us. But this morning, while he was in the middle of watch his cartoon, he asked for a hug and then went back to watching his cartoons. Sometimes I feel like he gives his bear hugs to those that need it the most. He definitely looks a lot better today. I can only hope it keeps that way and they find out what is making him have feversand we can go home soon.

These are what our last five Wednesday morning have looked like. We finally a routine to make this experience easier on him and on me.

Day 15: As we adjust to out nre normal, each day is getting better. Somedays can be tough and stressful but we try our best to stay postive. Enzo understands that his blood is sick. We call it a cancer party and that the medicine he takes is putting stop to it even though it may not make him too good. This is tough to explain to a kid, here take this medicine because you have to and it may make feel like crap right now bit in the long run you will get better. As an adult, we get it but we usually tel kids to take medication to help bit these medicines has to take make me wonder. It breaks my heart when I force him to take his medicine in the morning and at night. I try to not lose my patience but it is hard. I want to believe that after these five weeks are up that his medication will decrease but I only tell myself as I don't want to disappoint him. We don't sugar coat what is going on but we do help them understand what they are going through. For example today, we had to go to CHLA to have his PICC line dressing changed becuse there was blood on the foam part and that requires him to be admitted to ER and then it requires a nurse holding his arm while they remove super sticky tape and hope that he doesn't move or pull it becuase the solution they use to disinfect burns his simi open wound. It was tough for me to watch, I had to hold him down a bit. At home, I am steong bit nm once I get to the hospital, it breaks my heart that I can't protect him from this cancer. The only thing that I can do is to make sure he takes his medication and that I am constantly make sure that he is ok and that I pay attention to anything he conains about. Maybe I being hyper atttentive or exagerating but that is my job as I know him best. I admire his resilience and his smile. He is silly and will always give me a bear hug. His brother and sister are also pretty amazing, they are being patient with him and with us as our we pay a little bit more attention to Enzo. They get.

Day 9: We are back at CHLA for what they call a an LP (lumbar punture) for two things: to check his Leukemia levels in his spinal cord and to administer chemo. This was morning was looking hopeful but we found out that his platelets were low so they had tobdo a transfusion. An adult would be ok and say lets do it but to a hangry 4 almost 5 year it is not what he wanta to hear. He wants food now. He threw a little bit of a tantrum but he went back to being ok. Luckily during the later part of his transfusion he knocked out and was asleep when they put him under. It was rough seeing him go under. I realized that when I am at home, it is easy to be distracted but when you are at the hospital you have no where to go but come face to face with cancer. And have faith that the medicine will work and defeat cancer. It looks like we will be here at the hospital most of day. Then we have clinicals and met with his oncologist. For now, I am signing off. If anyone would like to help, please follow this link, https://www.chla.org/blood-donor-center.

Blood Donor Center About the Blood Donor Program The immense support we receive from donors like you helps us meet 90 percent of our patients' needs for blood transfusions each year at Children's Hospital Los Angeles. We need continued blood donations to help us sustain the needs of our patients. Blood Donor Qualifica...

On April 2, 2020, we found out that our little Enzo was diagnosed with acute lymphoblastic leukemia. During this whole pandemic we were expecting Covid19. After, almost a week of being in the hospital his levels were good enough to go home. Even though he fights, plays and fights with his brother and sisters he missed them so much while in the hospital. He is a trooper. Since he hates medicine he surprised us when he was able to swallow a pill like nothing. Shot, I didn't learn to swall them until I was early teen. At this point, we can just it day by day and hope that in three to three in half years he will completely recover. We are not religious but at a time like this I was mad at the supreme powers that be. Why him and why does cancer happen?!?! These are questions that we may never have a answer to but yet I can only do my best to help him. We will have good and bad days. Ways we can help, and register for bone marrow.