Everything Changed in an Instant

I’ve never really thought of myself as the blogging type. Don’t get me wrong, I’m not knocking the concept. I adore writing, consider myself to be an open book, and have always admired my stay-at-home-mom-friends that had time to post blogs of volunteering at their children’s school events, latest recipe endeavors, or pictures of heart-shaped pancakes they made their family for Valentine’s Day. I just never had the time to.

I was too busy juggling climbing the corporate ladder, raising two young children, two dogs and a cat, all while keeping a marriage together. Not to mention the fact that I wouldn’t really have anything to talk about if I did decide to blog: wake up at 4:30, exercise, drink coffee, feed the dogs, feed the cat, get ready, get the kids ready, leave the house at 6:30, drop off the kids at daycare, take the train into downtown, work, take the train home, pick up the kids from daycare, go to the kids activities, get home around 7, make dinner, eat dinner, feed the dogs, feed the cat, get the kids ready for bed, get myself ready for bed, crash by 8, repeat. Hardly even time for housework, no time for myself, and certainly no time for anything extra.

Everything changed in an instant.

On December 1, 2017, my daughter Gracie was diagnosed with a high grade, malignant glioblastoma through and around her brain stem. It’s not DIPG, although it is very similar which means that the doctors are treating it essentially as a death sentence. They said it could be a few weeks, a few months or a few years, but the average prognosis of what she has is about 9 months after diagnosis.

The month of December was an absolute whirlwind after getting this news. Between endless hospital visits, going on leave from work to nurse Gracie–who now can’t even do basic activities of daily living like getting dressed or going to the bathroom without help–dealing with insurance companies, hospitals and clinics, and just coming to peace and acceptance with her diagnosis, my head was spinning.

I was physically sick to my stomach for a few weeks after finding out, and there were days when I couldn’t stop crying. After a few weeks of this gut wrenching depression, I realized that this wasn’t helping the situation and that I had to do everything in my power to pull myself together. I’ve been to counseling, been prescribed antidepressants, spoken with others that had lost children, but the pit in my stomach is still always there.

That’s why I’ve decided to start this blog. The primary reason being a therapeutic outlet where I can sort out my feelings and experiences, in hopes of it providing better relief than tossing and turning, unable to sleep because all I do is think about this all night. I’m hoping to connect with others that have been through experiences like this to get some insight and support. In a perfect world, I’d like to raise some awareness and shine a spotlight on brain cancer, especially pediatric brain cancer. If this takes off, maybe between Gracie and John McCain’s diagnosis, more publicity and money will go into glioblastoma research!

I can tell you, based on the past month, that there are good days and bad days, and I won’t be editing our experiences to paint a good or a grim picture of things. This will be our REAL journey, for better or worse.

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Babywearing 102: BIG GIRL Wearing

Our family has always been very active and outdoorsy. Hiking, camping, and long walks along the local trails have been a cornerstone of family life for us. Both kids have hiked with us since birth in a carrier, and by the age of 3 or 4 they were regularly doing up to 10-mile hikes with us with little to no help.

I was concerned that we would no longer be able to be as active after Gracie’s diagnosis. Her energy levels are nearly back to normal, but she still can’t walk unassisted; even with her boots her legs get weak and tired easily.

Well, instead of worrying about it, I did my homework! I found a toddler carrier, the Tula, that has been safety tested to carry up to 60 pounds. She chose the pink chevron print, of course! Gracie is only 40 pounds after losing some weight during radiation and chemo, so this will give her room to grow, if we can be so lucky. Now it’s just a matter of me getting back into good enough shape to carry a 40-pound pack! Off to the trails we go!!

Ketosis Achieved

I never in a million years would have thought that I’d be having my 5-year-old daughter pee on a stick, but everything’s gone out the window since she was diagnosed with brain cancer. We’ve been doing the ketogenic diet since Monday, and today I bought keto sticks…an at home way to test for ketone levels…to see how we’re doing. My ketones were fairly lowish, but hers were in between moderate and high, meaning that her body is in ketosis! I also never thought we’d be that family doing the “extreme diet,” but here we are. We’re attacking this beast from every imaginable angle, so if we have to be the weird family that passes on pizza or birthday cake then so be it!

No More PICC Line

When I asked Gracie the first thing that she wanted to do with her PICC line out, her response was to go to the beach and go swimming. Well, there’s snow on the ground, so that’s not happening YET, but she CAN swim in a nice warm bubble bath for the first time in 2 months. I think she’s enjoying it! She’s even singing “IIII’ve been dreaming of swi-him-ing ”

Radiation is Over!!!

Gracie’s last day of radiation was scheduled for Tuesday, 2/20, but was postponed until Wednesday morning due to the machine being down. Her regular machine was still down at the new time, so it was delayed AGAIN until 10:30 on a different machine.

It was all for the best though, since Portland had snow Tuesday and Wednesday–having to wait until late morning meant the roads were mostly clear and it was smooth sailing. The snow also caused Liam’s school to be cancelled, so big brother was able to go with us to her final treatment!

She has been extremely tired and quiet for the past few weeks, so I am very thankful that radiation has ended. Chemo is over for now too, at least until the clinical trial begins. The total side effects at the end of treatment are: loss of appetite, about 30% hair loss, swelling at the treatment site on her head and fatigue. The radiation oncologist said that these effects will continue for at least another week, and is optimistic that she will be feeling better after that.

So, for now we celebrate! Out little warrior princess has slain yet another dragon. She’s undergone several MRIs, biopsy surgery, tumor resection surgery, PICC line put in and taken out, 30 sessions of radiation at near adult treatment levels, 6 weeks of daily chemotherapy and zofran, and is still defying the odds and surprising her doctors every day. Whatcha got next, cancer!?

https://videos.files.wordpress.com/HLNRHZ52/img_2761.mov

Run, Gracie, Run!

Gracie’s “super boots” arrived today, and I couldn’t help but think of the scene in Forrest Gump where he runs so fast that his leg braces fall off. He was able to break free of his “magic shoes” and takeover the world. I expect nothing less for our Gracie. #miracleshappen

Keto Kid

“By definition, alternative medicine has either not been proved to work or been proved not to work. Do you know what they call alternative medicine that’s been proved to work? Medicine.”

In the near three months that Gracie has been living with a brain tumor, I have heard dozens of miracle cures from friends and family. Everything from cannabis oil and the ketogenic diet, to pushing on her tailbone to release white blood cells and a magical clay that sucks all the toxins from your body. While most of these suggestions are coming from a good place from people that genuinely want to help her, we’ve also learned that there are some very unscrupulous characters out there “selling snake oil” to desperate people to make a quick buck, so choosing the right treatment path has been very difficult and has required quite a bit of soul searching.

The standard of care for patients with gliomas is:

  1. Surgical resection of the tumor…check,
  2. Radiation…check,
  3. Chemotherapy…check,
  4. Wait and see and hope for the best…REFUSE!

On Tuesday, Gracie will undergo her final radiation treatment and will then enter the wait and see phase of things. You see, other than the first three bullets above, there is no FDA approved course of action for brain tumor treatment. At this point, our family can either pray for the best and do nothing, or proceed with alternative medical treatments and FIGHT, and we are choosing to fight this thing to the death!

We have already coordinated treatment for her at UCSF for a clinical trial that injects the tumor directly with chemotherapy drugs by way of convection enhanced delivery. While this seems to be one of the most promising studies in current anti cancer treatment, there is zero evidence that it will actually work.

There are a couple of homeopathic treatments that show at least anecdotal evidence of success: cannabis or CBD oil as well as a ketogenic or keto diet. If we pursued CBD oil, we would likely be ineligible for the UCSF study, but after months of consideration we have chosen to adopt a keto-like diet as a means of attacking the cancer from all sides. I say “keto-like” because true keto requires a hospital stay to test your ketone levels, weighing out precise portions in grams as well as timing of food consumption. I think that’s a little harsh for anybody, especially a 5-year-old, to go through, so we are switching to a low carb, high fat diet without all the extra fuss.

“The idea behind ketogenic diets is very simple. If glucose is the primary fuel for cancer, then lower carbohydrate intake and replace carbohydrates with other sources of fuel, such as fats, in order to push the body’s metabolism.” Ketogenic diets are high in fat, adequate in protein and low in carbohydrates. Generally, the macronutrient ratio varies within the following ranges:

  • 60-75% of calories from fat (or even more),
  • 15-30% of calories from protein, and
  • 5-10% of calories from carbs.

I will start her off with a 60/30/10 ratio, and to make it easier for her to tolerate I will be at her side doing the diet with her! This is one of the hardest diets to adhere to–as close to zero carbs as possible, meaning no candy, grains of any kind or even fruit. It will require quite a bit of sacrifice, but something is telling me that this is the right thing to do to help save our daughter.

Researchers from Massachusetts General Hospital conducted a study to see how a ketogenic diet effects outcomes in patients with glioms. Ultimately, they found, “Neuroprotective and anti-oxidative properties of ketone bodies (KBs) in conjunction with selective starvation of malignant glioma cells may provide a less toxic and potentially a more efficacious treatment regimen that could introduce a new ‘metabolic paradigm’ to brain cancer management challenging the current SOC,” according to the study. Further, the researchers also mentioned that this kind of diet could also protect healthy tissue from the negative effects of chemotherapy and radiation.”

Tumor Twins

The day we were given Gracie’s diagnosis, we were told that the vast majority of brainstem tumors are inoperable, and that there is generally nothing they can do other than radiation, which would likely only prolong the inevitable for just a few months. We were also told that there was ONE GIRL whose tumor scan was nearly identical to Gracie’s; ONE GIRL who was successfully operated on, ONE GIRL who nearly 3 years later had no reoccurrence of cancer. Knowing that there was somebody out there who has what Gracie has and is still successfully fighting on 3 years later gave us so much hope that we agreed to the operation on the spot, even though it is incredibly risky to operate in the brainstem.

Fast forward to a few weeks ago when I got a message: “Hi there! I heard about Gracie and I immediately wanted to message you. I was diagnosed with a glioblastoma in 2015. I’m starting to get better now, the tumor isn’t on my mri photos now. They haven’t claimed me cancer free yet, but I was not supposed to make it this far. If you ever wanted to talk, or maybe let me give Gracie some hope. I’m here! If you would rather not, that’s okay too. I just can’t even wrap my head around her having this, and your family having to go through this nightmare.”

I’m normally not very responsive to people I don’t know, but for some reason my heart called me to answer her back, and so I did. Our back and forth conversation narrowed down that she had the same tumor, and had been operated on by the same surgeon at OHSU as Gracie. I couldn’t help but think that this could be the ONE GIRL I’d been hearing about all this time. We agreed to meet up the next time she was in town.

We were able to confirm with Gracie’s oncologist on Tuesday that she indeed was the ONE GIRL! I told him that we were meeting up with her, and he said something along the lines of, “oh that’s great since their scans were so much alike!” I didn’t expect him to confirm or deny anything so I felt like I couldn’t breathe when he said that. She was in town yesterday for another MRI so we met this morning for coffee before she drove home.

There were soooo many questions I wanted to ask her, but nothing was as burning to me as what “no reoccurrence” meant. Was the tumor gone? Was it still there but hadn’t grown? Had it grown, but was no longer cancerous? Etc, etc, etc… She confirmed to us that the tumor was completely gone! Her past several MRIs, including yesterday’s, were completely devoid of any evidence of a tumor!

It was a pleasure and an honor to meet up with somebody who is going through the same exact tumor as Gracie, and able to actually articulate the experience–unlike my 5-year-old’s daily response of “I’m fine.” I am exceptionally happy for her progress and for beating the unbeatable. It was also nice to talk to another mother experiencing what I’m going through, and one with the same view of “throwing everything but the kitchen sink” in to her treatment regimen. I’m hoping that this will be the first of many visits we have with her and her family!

A Happy Valentines Day

Today couldn’t have been a better day for Gracie! It all started off with 2 very special visitors coming to greet her as she awoke from radiation. Thanks to Capes and Crowns and Seattle’s Princesses, Elsa and Moana were there to say hello and they gave Gracie a gigantic pink unicorn! There was even a little bit of snow lining highway 26 on our way to and from the hospital-obviously Elsa’s doing!

After that we went straight to school to celebrate Valentine’s Day with Gracie’s classmates. She even asked me to stay for lunch!

After school Liam had a play date with a friend so Gracie and I had a date of our own…Mc Donalds…her choosing!! She played in the playground for nearly an hour and took breaks to sit on moms lap and take silly pictures (AKA fun with Snapchat filters!)

We then drove to Tualatin to go to her occupational therapy appointment, which is basically just playing fun games and doing crafts. She then got to choose her own dinner…a roasted chicken, macaroni salad, garlic bread and cupcakes. We ended the night with a tea party while Liam and dad sorted Pokémon cards.

All in all, a very happy Valentine’s Day for the family.

Elsa!!

Here are the first of the professional photos from Capes and Crowns. Truly stunning pictures taken by some pretty spectacular people! Please check out their website to see what you can do to support these amazing ladies in their quest to make sick children feel so very loved and special! Special thanks again to Kylie and Halsey!

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