Author Archives: maja.brugos

remission- 4 years off treatment

Halloween_2014We hit a big milestone November 2nd…4 years off treatment, considered to mean that the cancer is truly in remission. At the 5 year mark, on November 2, 2015, Diego will be considered “cured”.  Meaning statistically that Wilms tumor does not come back. I’ll be honest, it makes me nervous to even write this. It’s hard to ever feel fully off the hook with this disease, especially considering that by being treated for cancer with chemo and radiation, Diego is at higher risk for secondary cancers….

But, that is not something I think about every day. Quite honestly, I rarely even think about it these days but It’s always sort of in the back of my mind, at least until scan or doctor visit time. He is still scanned every 4-6 months. His doctor has decided to move to ultrasound and chest x-rays rather than CT scans because of his remission status. Which is great really, since the CT scans also expose him to more radiation.

And interestingly enough, just this past week, Diego has started sporting his Beads of Courage necklace to school. He wanted to share his story with his second grade class. Prior to this, Diego didn’t want to share his status as cancer survivor with anyone. I asked him what changed and he told me that it was because of this traffic accident we were in a few weeks ago… This accident was a small fender bender on the freeway, nothing major. I had both boys in the car. It did end up totaling  the car, but only because it was an older model. Most importantly, nobody was hurt. Diego was extremely shaken however. As he often does when faced with danger, he went into a very fearful place. He was terrified of dying, terrified that because he hit his head and felt dizzy that he wasn’t “going to be smart anymore”. I assured him that it was going to be okay, and the paramedics did as well.

But somehow after surviving this event, what I can only call a near death experience for a 7 year old, made him seize upon the meaning of that necklace. That he is strong, resilient—a fighter. That’s he’s done it before, and he can do it again. HIs necklace has since become a source of pride.diego_remissionDiego wore his beads to his checkup on Thursday. As well as a Santa hat. Because he loves Christmas so much. There was no holiday tree in the waiting area yet, but Teddy’s train table was there, donated to the clinic after his death. We met Teddy, our friend with Neuroblastoma, in the hospital during Diego’s treatment in 2010.  Teddy lost his battle with cancer nearly two years ago at the tender age of three. It breaks my heart to see that little train table each time we visit the clinic, but it also brings me joy to see Diego play with it, and to know that it’s there for other kids to enjoy. And it really beats the heck out of the broken magnet table they had there before.

And in July, the new Kaiser Oakland Hospital opened its doors. Another milestone—construction on the new hospital had barely broken ground the week that Diego was diagnosed. Entertainment during all those hospital stays in 2010 involved watching dump trucks haul away tons of dirt and later tower cranes lift I-beams high into the sky. Over the years our family has watched the building progress each time we go for checkups for visits at the medical center.

hospital_montage-scaled-1000kaiser_oakland

In April 2010, during those first emotional and dark days of the diagnosis, I suppose I recognized, or chose to recognize some sort of symbolism and message in that gaping hole across the street. That  the razed city block mirrored the deep sense of loss and despair in our own hearts. But the trucks and machines kept rolling, just like we would need to put one foot in front of another to get through every parent’s nightmare. And thinking, during those days in 2010, reminding myself that one day this razed city block would be rebuilt. And the hope of all hopes that one day, Diego would recover, that he could recover as good as new.

img_0711-scaled-1000

And here we are, four years later. Older, wiser, grayer parents with a healthy soon-to-be eight year old boy. A boy not without some health issues or battle scars, but a boy so full of life, so full of emotion, and so full of wonder. And a boy so overjoyed that he is actually going to get to meet Santa Claus this coming Saturday.

 

kind of a secret

So this morning when I was helping Diego dry off after his bath, he showed me his ribcage and pointed out that his left side sticks out a little bit more than the right and there is a bump there too. I assured him it was okay, and told him that the bones were like that because they had to cut the ribcage to remove the big tumor. We looked at the scars on his abdomen, I said, “Here is where they made the incision.” He pointed out the crossing of the two large scars and said, “Here is where they made another incision.” Then I said, “Actually the first incision is from where they tried to take out the tumor the first time, when it was about the size of an eggplant. But they couldn’t, it was too sticky. So then they decided to start chemo, and then radiation. But then the tumor still kept growing, and you got very sick and we were very worried. So then the had a second operation to remove the tumor, which was now football sized, and they made two big cuts to get it out.” I held up my hands showing him the size of an eggplant and a football, his eyes got big and he giggled at the idea of having such a big belly.

Then I asked, “Diego, have you told any of your friends about the tumor?”

“No. It’s kind of a secret.”

Why I asked. He was silent.

“Because you just want to be like everybody else?”

“Yes.”

three years

I remember the first time I got Diego’s hair cut professionally when he was a little more than a year old. He had beautiful blond locks. I went to a barber that our nanny recommended. Not understanding what I was asking for (longer, but cleaned up) she immediately took out the clippers and shaved off a swath. “No!”, I cried out. But it was too late. Either he was going to have a short patch of hair, or it was going to be a buzz cut. So buzzed it was. And I was pretty upset about it.

Three years ago today I found the lump, and we found out that lump was cancer. Back then Diego was still a precocious three year old with beautiful blond locks of hair. A few weeks later those locks started falling out in clumps when he started chemo. Erich shaved Diego’s head at the hospital because he was suffering so much post surgery and with chemo and radiation’s side effects– clumps of hair falling in the mouth was at least one less thing for Diego to worry about. By September, his eyebrows and his eyelashes were gone too.

After chemo, his hair grew back. Darker, thicker, wavier. A completely different head of hair.

And today this little boy is in desperate need of another hair cut.

I get it cut short these days. His hair grows fast and it gets bushy.  I usually I wait until his hair is totally out of control before I bring him in for a cut. “Are you sure you want it that short?” The stylist always asks, “I don’t want you to get upset if you don’t like it.”

Oh no, I won’t get upset.

it doesn’t actually get easier

Photo

Diego had his quarterly scan today. This is pretty much how it went:

8:15 am       Drop off Mateo with grandma
8:30 am       Have Diego drink 8 ounces of water to prep for scan
8:45 am       Arrive and check Diego in at Kaiser hospital
9:00 am       Diego starts to freak out about impending IV in waiting room
9:05 am       Nurse comes to get Diego, he clings to me and tries to run away
9:07 am       Needle comes out, followed by Diego shrieking and screaming bloody murder

9:10 am       Screams of torture ensue
9:15 am       Mission accomplished (IV placement)
9:20 am       Diego led to CT room
9:22 am       Discussion (out of Diego’s earshot) of vomiting episodes during
                    previous CT scans
9:23 am       Diego led into “big doughnut room”
9:24 am       Tears
9:25 am       I make up funny games, point out Christmas decor, to make Diego smile
9:30 am      I put on lead dress, and hold Diego’s hand
9:31 am       Scan commences while I sing Diego’s favorite lullaby and gently grasp his hand
9:40 am       Scan complete (Vomit free- yay!)
9:41 am       Stickers, stickers, stickers!
9:50 am       Leave Kaiser hospital
10:00 am     Drive to cafe and toy store for toy and a treat
10:05 am     Quality time over granola (Diego) and a latte (me) 
10:25 am     Toy engine treat time at toy store!
10:45 am     Drive back to grandma’s house and drop off my big boy
11:10 am     Return home, clean up breakfast dishes
11:15 am     Watch clock (repeat at 5 minute intervals)
11:40 am     Break into Christmas chocolate
11:50 am     Think about Teddy
12:00 pm     Skip lunch, eat more chocolate
12:15 pm     Watch clock (repeat at 5 minute intervals)
1:00 pm       Think about Diego’s bad scan
1:05 pm       Reassure myself it’s going to be fine
1:10 pm       Look at clock
1:15 pm       Think about Diego’s fevers this past month
1:20 pm       Episodes of nausea
1:30 pm       Look at clock, remember I was supposed to be working today
1:35 pm       Work, shift focus on something else
1:55 pm       Look at clock
2:00 pm      Call oncology clinic for results
2:01 pm      Get voicemail, leave message
2:02 pm      Think about Teddy 
2:10 pm      Deep breaths
2:20 pm      Start thinking about what it would be like to have Diego on chemo again
2:30 pm      That sinking feeling in my stomach
2:40 pm      Make tea, change music to something upbeat
2:50 pm      Look at clock
3:00 pm      Try to get back to work
3:15 pm      Sinking feeling that scan is bad since there has been no callback
3:20 pm      Start to feel grateful that at least we had a great Christmas together
3:35 pm      Think about Teddy and his family
3:45 pm      Notice that hands are trembling
3:50 pm      Decide to call oncology clinic again at 4pm if no callback
3:55 pm      Watch clock, deep breaths
3:59 pm      Wait for clock to change
4:00 pm      Call oncology clinic back
4:01 pm     On hold
4:05 pm      Talk to nurse
4:07 pm      Scan results = All Clear/NED
4:08 pm      “Are you sure?” (I always seem to ask this.)
4:09 pm      “Yes, sure.”
4:10 pm      Hang up, hands still trembling
4:15 pm      Deep breaths
4:20 pm      Quiet
4:25 pm      Tears

You would think, that the wait for scan results would be a wee bit easier by now. When I mentioned this to the nurse over the phone, she said it never really does.

teddy

We_love_teddy

It’s with great sadness that I post an update on our friend Teddy. After battling cancer over half his short life, Teddy at age three-and-one half passed away on Thursday afternoon. This picture is one that a family friend posted on Facebook, as part of a candlelight vigil on Wednesday night. Please focus healing energy on his parents and 8 year old brother as well as extended family and friends.

for a friend

Hope2

If you are the sort to say a little prayer or focus your energy in a positive way, please focus that energy on our little friend Teddy.
He is Mateo’s age, about three and a half years old has been undergoing treatment for a cancer relapse (neuroblastoma). Well, his family just got the difficult news that the cancer has quite suddenly spread to multiple parts of the body and they are now running out of treatment options. Teddy is the littlest brother of two super close brothers in a family so much like our own.

Friends, family, and strangers alike, we appreciated all the prayers, love and good vibes for Diego when he was on treatment. If you are the type to believe in the power of positive thinking, please help focus on our sweet little friend Teddy.

two years OT!

Img_7877

NBD.

No big deal.

Ok, it is a big deal and it isn’t a big deal.

It’s not a big deal to Diego, but it’s a big deal to the rest of us. And I’m totally okay with that.
Two years ago Diego had his last chemo treatment. It was hardly the end— with a second bowel obstruction (and 4th surgery), sepsis, discovery of 2 additional tumors, a fifth surgery and lingering questions over relapse. Still, it’s still a pretty awesome milestone, don’t you think? Somewhere I read that his chance of relapse goes down after year two, but I’m not really looking at the odds any more. I’ve got one kid who is doing pretty great, so that’s all I care about.

I mentioned this anniversary to Diego yesterday and I think he just said. “Oh.” I asked him if he remembered being on chemo and I think he said something like “Not really.” Which, quite honestly, is totally awesome. I am totally okay with him forgetting the nightmare. I was going to do some sort of celebration but I realized that it would only be for Erich and I. This little boy doesn’t need to be defined by that disease any more. I remember while he was on treatment running into this mother with her teenage son who was a cancer survivor and she kept blathering on about how they were told he was going to die so many times and how hard his life was and, besides being mortified she was saying this in front of my kid, I felt like this teen had a terrible burden put on him. I mean, it sounds like he lived his whole life with this sort of story hovering over him like a dark cloud.

I guess I want Diego to have a normal childhood. Let’s hold on to his innocence as long as we can. In the past 2 years both grandmothers dealt with cancer and were treated surgically, and one friend has suffered a relapse, but everybody is now doing just fine. He doesn’t need to know that cancer can kill. Why should he? He is five.

As for me, I’ll admit, I think I’m still trying to process it all.

It’s been a busy couple of years with other more normal challenges. It probably still took our family a year to recover emotionally, and just come to terms with the uncertainty of it all. Each person deals with this sort of situation differently, and I feel that my way has always been to philosophize and to essentially to live with- and be prepared for- everything other than Plan A. (That’s where we live happily ever after.)

Yesterday I watched a preview for a film about pediatric cancer patients called The Truth 365  and probably cried for about 20 minutes afterwards. It’s so unfair what these children and their families go through. I honestly still can’t cope when I hear of a child dying of cancer, it still feels like it could be Diego. I haven’t washed my hands of this experience, nor will I ever allow myself to. I want to help, to speak out, but I haven’t figured out quite how to find my voice. I have a lot of emotion on this topic—especially when it comes to the flaws of US medical system, what losing Obamacare could mean to Diego and the general lack of funding and interest in pediatric cancer research. I guess I fear opening up about this would be akin do a dam bursting.

The last time I opened up with my support for Obamacare on Facebook it became a polarized comment war of epic proportions, but as the election draws near I feel it’s important to put my views out there again. With all the soundbites and internet pseudo-activism and screaming about death panels, please consider that without the protections of Obamacare there are real children who could max out their lifetime insurance caps before they hit puberty, and many of these kids will be saddled with a pre-existing condition and thus uninsurable their entire lives. When you open up a bill for half a million dollars that your insurance company foots for you, you really start to understand the value of being able of being insured. I’ve read somewhere that medical costs are the leading cause of bankruptcy in this country, and I certainly believe it. So sorry to get political, but for me this election is personal, and I worry about Diego’s future under a new president. I think it’s worth putting a face to the people where these laws make a big difference. Our out of pocket medical costs have quadrupled since Diego was diagnosed, but I will take that any day over him being denied insurance altogether.

So there it is, a little bit of trickling over the dam. I will now get off my soapbox. I feel this blog has been a safe place to share my fears and concerns, so please keep the political debates to social media or where ever else people are spouting off these days.

Please do, however, join me in celebrating Diego’s NBD Second Chemoversary!

kindergarten

226073_10150992165906384_21230

A big day for Diego today. (And a big day for me too, I suppose.)

I am so proud of my little boy. With the move and his health issues I was so worried about him starting Kindergarten. But he was just so confident and fearless today- not a smidgen of nervousness. He is a strong boy– he’s going to do just fine.

full circle

Photo

Nearly two an a half years ago, we were signed with a realtor and weeks away from putting our house on the market. Then, the Friday before we were going to pack up, I found the lump, and our lives were turned upside down.

About two months ago, we made the decision to take the plunge and started packing up once again. We’ve already moved into a temporary apartment while the home is painted, staged, and readied for sale. The open house is scheduled for September 9th.

It’s the end of an era, in many ways. Even though Diego has been off treatment nearly 2 years now, we still had much of his cancer “accessories” taking up space in our home. So I packed up the excess saline syringes, caps, swabs, tube feeding formula and dropped it off at the clinic, along with some magazines to replace the 10-year old Oprah’s they have on display. Then we took all the half empty medication bottles and sharps to the hazardous waste dump. All of the chemo treatment calendars and “When Your Child has Cancer” booklets went into the recycling bin.

It felt sort of weird.

I think part of me was keeping things “just in case” – perhaps as a preventative measure, perhaps superstition, but at this point there was no reason to hold on to the stuff anymore.

Diego is due for an ultrasound and x-ray September 2nd rather than the CT scan. He will start kindergarten on Monday. Then on November 2nd he will hit 2 years off treatment, a big milestone.

So many things are changing right now, it’s pretty mind blowing. But both boys are doing great with it all. Diego is even getting excited about house hunting. I was just thinking a few weeks ago that I felt that Diego has fully recovered emotionally from his cancer treatment. No more fear, no more dark moods. I’m so proud of him. Well, he perhaps does still scare easier than most kids his age, but he is a confident, outgoing, goofy, and super bright little boy. Honestly, you would never know what this kid went through. Did I mention he is a total ham? He will be the class clown for sure.

This picture was taken a couple of weeks ago at our old house. I think I’m going to blow it up and frame it, or at least keep a copy on our fridge. It’s definitely been hard for me to say goodbye to the house and the neighborhood. I think I will miss my decade old succulent garden the most, but I know we can start over.