Heather and I met right after I graduated college at a mutual friends graduation BBQ. We instantly clicked. I got married shortly after that and months later we reconnected after we both became pregnant with our first babies. We kept in touch through our whole pregnancy keeping up with who may go into labor first. Sure enough, we ended up in labor the same day. Our babies were born only hours apart (yet one day apart), as my baby was born at 2:00am. Her a sweet little boy named Jackson. I had a baby girl named Summer.
We continued to check in on each other and compare notes as we reached all the fun milestones that come with a growing baby. Fast forward a year or so, Heather and Arthur were planning a beautiful wedding in Sonoma and she knew I was a photographer. We connected so well and she figured why not have me capture their day. So we got to reunite and discuss so many fun ideas for their big day.
Then something changed. Everything changed for them and namely Jackson. He became ill. There were not many answers for a while until what Heather described as probably the worst day of her life. Jackson was diagnosed with a rare case of childhood neuroblastoma. When she told me about this, I distinctly remember feeling completely overwhelmed with grief for her. It hit so close to home and all I could do was cry for her and pray. I prayed all the time for answers, comfort and just faith that would get them through this.
Her and Arthur decided they would go ahead and elope before beginning Jacks treatment. So they had me come down to a park that held a sentimental place in Arthur's heart from Childhood and I captured them getting married there with a few of their closest family members and friends. I remember Jackson and his energy was just so contagious. There was such a strength I found in his demeanor and more so Arthur and Heather's. They remained so calm around all their family and everyone there was so present.
I knew there were no words I could lend that would help in anyway, so I just was there. Checking in and caring for him the whole way. Heather started a blog that described her research and experiences with Jackson for family and friends who wanted updates that she just didn't have time to reach all. I followed along and each post I read, my heart hurt worse for her.
As if this news wasn't grave enough... Then, 9-10 months into Jacksons treatment, Heather was diagnosed with breast cancer. Jacksons diagnoses was rare enough as he was stage IV and on the older age side of the spectrum. Fortunately, both Jackson and Heather made it through their treatments and without a doubt the love and strength from Arthur played a huge role getting them through. I wanted Heather to share in her own words, her experience with hopes that anyone else going through such similar triumphs can learn or find comfort in her strength and mindset though both treatments. .
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(1) Please tell from your perspective, what the beginning stages looked like before, during and after Jack's prognosis?
Well, let me begin by saying that my perspective now is completely different from when everything began with Jack's diagnosis, and while watching him go through treatment and immediately after. It is almost as if the whole thing was some sort of grey dream that has blurred a bit over time. I remember that we were just going along, my (now) husband working, Jackson beginning preschool, and myself in school at Sonoma State and preparing for my law school entrance exams as well as our upcoming wedding. And then all of a sudden our entire world sort of shifted. We felt that we lived in some parallel universe where everything was dark. At least in the beginning. There was a lot of testing before the doctors told us that Jackson did in fact have Neuroblastoma, a pediatric cancer that has a solid tumor that forms in the abdomen. And if this wasn't terrifying enough, we were told he was stage IV, and his prognosis was made worse by the fact that he was on the older side for getting this type of cancer- at three years old. I was devastated. We were told the cancer had metastasized to his bones, including his skull and the bone above his eyes. We were then shown a scan of his tiny little body and it was completely covered in the disease. I remember sitting in the conference room with the oncologists from CHildren's Hospital in Oakland and all of a sudden there was this type of ringing in my ears. Like you would see in a movie. And everything in the room faded away and I just sat there with the news that my three year old son, my sweet, loving little boy, was going to be in for a long and difficult road.
Jackson was diagnosed in September of 2013 and finished treatment in December of 2014. He went through numerous surgeries for line placements, chemotherapy, surgery to remove the tumor between chemotherapy rounds, a stem cell transplant, radiation, and immunotherapy. Immunotherapy was rough especially. And we lived at the hospital with Jack. He had very little interaction with other children, as all of the other children around were also going through treatment. It was difficult on him. And seeing him in so much pain, and not understanding what was going on, was almost unbearable. It seemed as though when we thought we couldn't take watching him go through it any longer, it become more difficult.
But eventually, his treatment ended. And we still had our sweet boy. So we just took it from there.
(2) Can you describe the feelings you experienced going through the process of Jack's treatment?
I can't think of anything more fitting to describe my feelings other than to say I was devastated. I was devastated at the loss of this part of his childhood. I was devastated at having to see how much pain he was in and how afraid he was. And I was devastated at the prospect that he could go through all of this and we could still lose him.
Then there was a shift. In July of 2014, I was diagnosed with invasive ductal carcinoma, a type of breast cancer. I had a double mastectomy, and went through chemotherapy myself. Some days, I would drive from Oakland, where Jackson was getting treatment, to Marin General, where I would then get chemotherapy and then proceed to drive back to Oakland to be with Jackson. Thinking back on it, that was pretty intense. And all the while going through my treatment, I just remember feeling absolutely shattered because I could feel what my son was feeling. I understood in a way that no one else really could. And it broke my heart. That kind of sick and treatment is just- something else entirely.
(3) It's extremely rare for a child and mother to go through cancer in a lifetime, let alone during the same time. Did the doctors find anything that explained this?
Believe it or not, there were no links to my cancer and Jackson's. I even had genetic testing done to see if it was something along those lines. And it wasn't. It seems that this would be comforting- to know that Jackson nor myself had any type of genetic marker for cancer. But it was quite the opposite. I needed an answer as to why, and I wasn't able to get one. The doctors had explained that it was just a complete anomaly; that the odds of that happening were somewhere near statistically impossible. We were told that it was simply, just bad luck.
(4) I believe what most people would want to know, is how, where, why, when did you find strength to get through this process emotionally/physically?
In the beginning part of Jackson's treatment, I coped by doing what I knew. I researched. I read more studies and scholarly articles than I ever care to again on the subject. I called other doctors. Other cancer centers. I made sure that the decisions that we were making for our son were the best we could possibly make. And for a while this kept me going. But eventually, it wasn't enough. And that is when I started to really rely on the other parents who had children going through treatment. They were incredible. There was an immediate bond. There were also friends, and their caring and kindness, as well as our families. I think just seeing good in such a dark time helped all of us.
There was also my husband. He was my rock. He is my rock. I still to this day do not understand how someone can love so completely. It wasn't some rose colored time period- it was definitely dark and difficult. And we didn't always agree, just like any other couple. But he kept me grounded. And he made me feel like I wasn't alone.
(5) How is Jack doing today? How has going through this changed him?
Jack is doing amazing. He is amazing. But treatment did change things for him. Even though his treatment ended in December of 2014, he was left with a very weakened immune system which has been slow to recover. And because of this, we had to homeschool him last year. And he didn't get to spend a lot of time with other children. We had even tried putting him in school with the recommendation of the doctors at one point, but he was very sick and he wound up in the hospital again. It was terrifying. So we tried to find a middle ground. We pulled him from school but let him play t-ball. it was incredible to see. he was so hungry for that interaction. It was very bittersweet.
I also noticed how compassionate my son is. He is such a little caretaker. And he has so much empathy. I love this about him. And I really saw it come to life during his treatment, as well as my own. He is just such a beautiful, loving little boy.
(6) How long after Jack was diagnosed, where you then diagnosed?
He was diagnosed in September of 2013 and I was diagnosed in July of 2014. So about 9/10 months.
(7) What sacrifices did you all have to make as a family to get through such hard times?
Well our lives just completely changed. My husband took some time off of work. I stopped going to school and didn't take my LSAT for law school. And we immediately both knew we were not going to have the big fancy wedding. And there were a lot more things but those are some that initially come to mind. But they all sort of had a silver lining. Yes money became impossibly tight, but my husband was able to be there with us. And yes I stopped going to school, but I was able to just focus on being a mother and taking care of my family and nothing else. And my husband and I sort of eloped- we planned a one week wedding! It wound up being incredible and I am able to look back on the beauty of that day because of you Kim! We just adore you!
Really with everything, we just did what we had to. It was difficult to let go of all of our plans for our lives. But the only thing that was important anymore in the plan was that we were all together.
(8) How has this changed you, as a mom, a woman, a person?
I think we all change. As we get older and time and life go by, we all change in some ways. All of our interactions and experiences and decisions shape who we are. So whenever I start to feel that I am incredibly isolated from everything we went through, I remind myself of this. Everything is relative to the individual.
As a woman, going through a double mastectomy at 27 was difficult. I imagine at any age it would be difficult. As women, we are taught at a very young age by society that our self worth is wrapped up in our physical appearance. So to lose my breasts and hair and look completely sick was difficult- I had to undo a lifetime of the wrong message. But I became incredibly aware of the impermanence of physical beauty. It took me a long time to get there, and I still have to remind myself of this when I see my scars. But it was important and is important to remember.
I do find that I disaster thought a lot more than I ever had. I find myself thinking that there is something else that is going to happen because we are just beginning to feel like things are moving forward. But I allow myself to have those feelings, and I move forward. I try and understand that these feelings are natural. And I try to remember in my weakest of moments to be kind to myself. Most of all, I try and appreciate how much love there is in our home, as silly as it may sound. And I continue to tell myself that everything will work out fine.
(9) To someone going through a part of what you have been through or everything... what words would you lend them?
You are strong. You are. I despise the term "fighting cancer" because it somehow implies that those who have "lost the fight" had some sort of control over it. That they have some sort of control over the outcome of their treatment. And the truth is you just don't. You have to realize that the control is gone, but that you are still strong and there and are you. And that is enough.
(10) Anything else you want to add about this experience.
Hug your babies. Kiss them a million times.
I got a chance to meet up with these three (add one, their precious puppy) and capture them all healthy and well now. Jack, still so full of energy. My girls got to meet Jack finally and play with him for a bit. He's such a special little boy and my goodness full of so much wisdom.
* * * {KBP} * * *