Parenthood and the cancer diagnosis

Lately, every time I sit down to watch the NBC show, Parenthood, I am in tears by the end of the episode. And, it’s not just a girly hormonal thing.

Generally speaking, I enjoy the show because they incorporate a lot of relevant topics, weaving them throughout their episodes. Things like: adoption, military/PTSD, Asperger Syndrome, and the larger concept of family.

Their recent story line with Kristina getting breast cancer has touched me. Deeply.

As with most people, I have a family connection to cancer. I have seen loved ones pass away from the ravages of this disease, and it isn’t pretty. It’s never pretty.

I have dealt with my own husband getting a cancer diagnosis just before his 30^th birthday.

It was the most difficult time of my life. That seems almost dumb to say because I wasn’t the one who had to deal with cancer – surgery, bone marrow biopsy, scans of all kinds, chemotherapy, radiation and more scans.

I cannot even imagine what Titan must have gone through in those moments by himself.

That’s what I was thinking of as I watched the last scene of the “Together” episode of Parenthood, when Adam was sitting with Kristina in the infusion room, holding her hand while her first round of chemotherapy was administered.


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I did not get the opportunity to be there with my husband as he went through the process, and it hurts me to this day. It was just not possible.

I wasn’t there when he got a terrible chemical burn when the chemo blew through his vein and destroyed the tissue inside his hand – which still bothers him to this day. I wasn’t there when they began diluting the chemo because of how much it burned going in, which took 2-3 times longer to administer. I wasn’t there when he felt immediately nauseous whenever he pulled into the parking lot of the hospital. I wasn’t there when he almost walked away from his last round of chemo because they couldn’t find a vein and he had to spend hours at 2 different hospitals just trying to get the IV set. I wasn’t there when he got the tattoos on his chest to calibrate the radiation machine. I wasn’t there because I couldn’t be.    

We didn’t have much help during that time. It was pretty much us against the world. I had to take care of my non-stop toddler and screaming baby during Titan’s treatment. It didn’t help that the kids and I were chronically sick the entire time he received chemo. We had one cold after another after another. Titan had to wear a surgical mask whenever he entered our house. For months. Even if I had been able to secure a babysitter to watch the boys while I went with Titan to the hospital, I couldn’t be there because I was a germy threat to each person that had a compromised immune system.

Titan after a round of chemotherapy - December 2005

 

It felt terrible knowing that I was stuck at home and my husband had to go through treatment completely alone. As his wife, it cut me to the core. And there wasn’t a thing I could do about it.

At the time, Monkey was in the thick of the terrible two’s, which we later found out was autism. Prince Charming was only a few months old, and he didn’t sleep, had terrible reflux despite breastfeeding, and he cried all the time. Of course, now we know he had undiagnosed food allergies and autism.

Every single day was intensely challenging, and if I managed to get a couple of hours of uninterrupted sleep a night, I counted myself lucky. Dealing with Titan’s cancer in the middle of all of that was just one more layer of chaos to a life that already felt completely out of control.

I was trying to figure out how to parent my children, who both seemed like unsolvable puzzles. I was trying to care for my husband who still had to work and support us, and couldn’t really help me with the kids or the house. All I could do was educate myself about cancer and treatments. I felt that if I couldn’t be there in person to show my support and sit with him for the hours he had to be there, I could show support from home by learning as much as possible to help him.

During the course of my husband’s diagnosis, surgery and treatment, we made a conscious decision to not focus on being scared or sad, but to maintain a positive and proactive approach. We did not grieve the diagnosis or dwell on anything that could go wrong. We both knew that Titan had to stick around and that there were no other options, so we agreed on maintaining that attitude and asked God to help make our faith a reality.

When we sat in the room with the doctor and went over the results that showed the presence of cancer, we accepted the diagnosis with a smile and not tears. Our response was unsettling to the doctor, who scolded us for not taking things seriously.

It was then that I became educated.   

Up to that point, I was staunchly mainstream with all of my ideas about medicine, food, and doctors. Everything I thought I knew was challenged. And, that is when it all changed for me.  

I learned the difference between vegetarian, vegan and raw. I learned what a naturopath does. I learned that there are stores dedicated only to supplements, vitamins and nutrition. I learned about acid-alkaline balance. I learned that charities like the American Cancer Society and Susan G. Komen are not all they’re cracked up to be. I learned that there is a difference between juice you buy at the grocery store and juice you make at home with a fancy machine.

I learned so many things!

I tried to use this knowledge for my husband’s benefit as he dealt with cancer. He lost 30 pounds, he lowered his cholesterol significantly without prescription medication, and he didn’t lose his hair as they promised us he would (although it did thin a bit). The doctors were extremely worried about his weight loss, and we were able to convince them that it was actually a sign of his good health because of the changes we had made to his diet and nutrition. We were trying to support his body so that he could better deal with the toxic effects of the chemotherapy.

It has been 7 years since he received his diagnosis.   

One thing is for sure: everything we learned about cancer has helped us with autism. Everything.

For that, I am thankful for the experience, despite how difficult it was. My eyes may not have been as open had my husband not had cancer. I probably would have never considered anything “alternative,” like the GFCF diet that unlocked speech for Prince Charming.

My boys are better off now because my husband had cancer. That is a completely bizarre thought, but it’s true.

I wish I could have been there for my husband in the ways I had hoped to as his wife, but our life just didn’t allow for it at the time. I think any wife and wannabe super mom always hopes to do it all, and it’s hard when reality doesn’t allow you to even try. I know that I can’t change what happened and that Titan understood, but I still wish I could have done more. There is still a lot of pain and pangs of guilt over that, which all came flooding back when I watched Parenthood.

Now that we are so far removed from the diagnosis and treatment, I can allow myself to feel those feelings. A little bit of distance from it helps me realize how remarkable the whole thing was, and how well we did in the circumstances.

It feels like an eternity has passed, yet when watching the show, it’s like it was just yesterday. I guess as long as the cancer storyline continues on Parenthood, I’ll get a little bit of therapy one episode at a time.      

          

It could always be worse!

This is what I told myself in the midst of doctor-visits-and-medical-mystery-a-palooza over the summer.  

It could always be worse!

Everything seemed to go cuckoo with the boys’ health toward the end of the summer. Nothing was clear cut about their situation, and no one seemed to know what was going on.   

The boys both had weird skin lesions that developed a few days after coming back from a camping trip. We did everything humanly possible to figure out what could be going on. Was it contact allergies? Were they bug bites? Was it some other condition? We had no idea and neither did the doctors. And after several days, when Monkey seemed to be getting better, Prince Charming was much worse and literally swelling before our eyes.

No one could tell us what was going on. The pediatrician didn’t know. The doctors at a second clinic didn’t know, even after 3 hours of them talking, researching and conferring with other doctors in the practice. No one knew.

Even after 10 (yes, TEN!) vials of blood taken between the boys for tons of tests, no one knew. (Getting the blood draw is a whole other story that requires consumption of a stiff drink – or several – before I am able to speak about it…)

The skin issue remains a mystery to this day, but thankfully the rashes are now gone. After about a week of not knowing what to do, making lots of phone calls, visiting various doctors, and doing endless research on the internet, I figured out a simple cure without any help from the doctors.

The secret is activated charcoal! I stuck a little pile of charcoal on top of the lesions and covered them with a bandage overnight. By morning my swollen Prince Charming was much less puffy. It was a messy miracle that took about 2 days, cost all of 3 bucks, didn’t hurt, and didn’t have any side effects. I wish I had figured it out sooner!

In and among the mystery skin issue, we were also dealing with some additional symptoms and concerns in Monkey. Cardiac symptoms.

Yes, you heard that right. In particular, tachycardia. If you are not sure what tachycardia is, it’s when the heart rate becomes accelerated for no apparent reason.  

You could have knocked me over with a feather when we figured out he was having heart issues. It was so unexpected.

When it first started happening, we thought it might have been an upset stomach, possible cold/flu, or even food poisoning. I was starting to feel like I was on Dr. House’s team with all of the research and differential diagnosis I was attempting.



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Each time Monkey would get his strange symptoms he seemed to recover quickly (within minutes or hours). There was only one time that his symptoms lasted for more than a day. He never developed any other symptoms of illness. It seemed strange that he apparently kept coming down with something but then the sickness never materialized. We knew something was up.

It was by accident that I figured out his heart was racing. From that point forward, we began documenting all of his symptoms and even found an app for our smart phones that would monitor heart rate. Then we got in to see a pediatric cardiologist.

Never in my wildest dreams did I expect one of my children to have a need for a cardiologist!

She sent us home with a portable heart monitor that we used to record any incidences as they occurred. Monkey was still being monitored when school started, so then I had to have a long discussion with the school nurse and his teacher to go over the details of the heart monitor in case he had tachycardia at school. What fun.     

After all of that, and a couple of visits to the naturopath, we still have a lot of questions about the boys’ health issues over the summer. We don’t know exactly what happened with either of them. We don’t know if the skin issues were related to the cardiac issues. We don’t know if any of the symptoms will come back.

The cardiac symptoms began going away once I started on a supplement protocol given to us by our naturopath to help Monkey’s immune system, focusing heavily on natural anti-virals. I did that for two weeks and as a result he stopped having his cardiac episodes.

We had a follow up appointment with the pediatric cardiologist to go over the heart monitor results. I reported the information about the naturopath’s treatment protocol and how the episodes tapered off and then stopped. Much to my surprise, she told me that since the naturopath’s protocol seemed to work, I should immediately begin doing it again in the future should Monkey’s episodes return.

What? A mainstream medicine person agreed with my naturopath and that natural methods worked and should be used again? I was happily shocked. Usually, information like this is met with disdain in the traditional medical community.

In our first visit with the cardiologist, she said there was a chance that his heart symptoms were being caused by some kind of virus. We were never able to pinpoint an exact virus from the myriad of tests run with the blood draws. So, she felt that success of the anti-viral supplements through our naturopath proved that Monkey’s heart issue was definitely being caused by some unknown virus. And, it could happen again. So, I will keep anti-viral supplements on hand for such an occasion.

All of this is to say, that during this time of health uncertainty, I really felt the stress of not knowing what was wrong and feeling helpless to fix it. Keeping that in mind, I know that it can always be worse.

Someone else always has a worse situation than you.

I better understood that I should not take my boys’ good health for granted. They have come a LONG way in their journey with autism and are much healthier than they were when they were younger! We have made a lot of changes, including the GFCF diet and proper supplementation. My boys are better because of it. I recognize that my life is much different now than it otherwise would have been had things not changed and I hadn’t been open to visiting a naturopath and doing other sorts of non-traditional treatments.  

During this time of concern over the summer, I really began to think of everyone I know that has dealt with things far worse than I can even imagine as a parent. I have friends who have children with Down syndrome that have dealt with multiple heart surgeries in their babies. I have another friend who had a child born with a significant heart defect, and right after her baby had a procedure to essentially re-build his heart, their apartment burned down and they lost everything while their son was recovering in the hospital. I have friends who have children with autism that cannot speak and still wear diapers at ages 8, 10, or even 16.

I can think of tons of examples of families that have a different experience with their child, and in my mind and my own experience it seems almost too difficult to imagine. What I’ve dealt with in my own boys is much more challenging than many of my friends have had with their children. But, we all deal with the cards we are dealt.  

We all have different experiences, challenges and triumphs. All we can do is try to do the very best we can in each moment of crisis or moment of joy. The boys’ health scares over the summer really brought that into focus for me.

I am so thankful for everything with my boys. Even though things have been hard in many ways, they’ve also been so wonderful in others. I am grateful for the path we are on, despite the twists, turns and brick walls along the way. I am also keenly aware that it could always be worse, and I’m exceedingly glad that today is a better day.    

Sorry, doctor. You're wrong.

I was doing some shopping at my local vitamin and supplement store when a lady looking at children’s vitamins noticed me quickly placing some products in my basket. She watched me for a minute and then asked if I could recommend some vitamins for her son. I looked over and saw a young boy sprawled out flat on his belly quietly playing with a car a couple feet away from his mom. I asked the mom some specific questions to try to learn about her situation so that maybe I could provide some guidance.

I learned that her 4-year old son was not eating. The mom was grasping at straws to get some sort of nutrition into his body. When he chose to eat, his diet was extremely limited – full of wheat and dairy. Sound familiar? He was also not communicating verbally with much success. The alarm bells were very loud in my head as she shared more with me. While she was talking, I glanced at him occasionally and watched him play with his car on the floor. He was passively listening, only trying to speak or use crude sign language when prompted by his mom. He wouldn’t communicate directly with me, instead using his mom as a translator for his very special hybridized language of Spanish, sign, and English.  

I began to share a bit about my boys and their journey since we learned about autism and their food allergies. The lights seemed to be turning on in her head. She knew there was something going on with her son. It was very obvious to me also, and I had just met him.

This mom had done everything right. She was seeking high-quality supplements to try to help her son avoid vitamin deficiencies from his lack of food intake. She told me his hearing was fine, but he wasn’t picking up speech as he should at the age of 4. Even his own father has great difficulty understanding him.

She told me that she had taken her son to the doctor to discuss her concerns about his lack of speech development and his daily refusals to eat. The doctor told her to not worry about the food thing and that he would talk eventually. His advice was to just give it some more time.  

OMFG! In my head I am going freaking nuts when I hear her say those words. I’m concocting an imaginary plan to go visit this excuse for a doctor and scream obscenities at him.

Give him some more time? He’s four! Obviously something is wrong. Hellloooo! So, the mom should just wait until he enters kindergarten and the teacher has a heart attack when she realizes how delayed this child is? That would be a huge disservice to the child, his family, and his future teachers.

I felt awful for this mom. I was her not that long ago. I had blind faith in our doctors. I heard those same words when I brought my son's delays to his attention. Oh, just give him some time. Boys are slower to develop speech. It will be okay. 



Don't forget...doctors are always right! Especially about cigarettes!

NO! No, it’s not okay! He doesn’t need more time! He needs help! NOW! The wait and see attitude infuriates me to no end. And, now that I have the clarity of 20/20 hindsight, I can almost taste my fury when I hear those same words again.    

Unfortunately, I listened to our doctor longer than I should have and I lost precious time that I will never get back. I finally figured out that I was getting nowhere fast and that I needed to take control of our situation. And I did. And my boys are better for it. I shudder to think where we would be if I had continued to wait per the doctor’s recommendation. It makes me cringe just thinking about it.

I spoke with the mom about food allergies. I also told her about free developmental assessments available in her school district. She was floored that such a service exists. I didn’t specifically tell her to pursue an autism diagnosis for her son, but I mentioned how my boys did many similar things at the same age. And, I used the word autism a lot. I feel very confident that this mom will call the school district to get an assessment for her son. I’m about 99.9% sure that they will find areas of delay and that he will qualify for developmental preschool. I have no doubt. A proper diagnosis will hopefully come in time, but the first priority is getting this kid assessed and qualified for a specialized education.

I gave her my card and asked her to keep in touch with me. I am very interested to see the outcome for this precious boy. I can only hope and pray that he gets the help he needs and deserves. Lord knows his doctor didn’t help him one bit with his ignorant remark. Jerk. Thank God this mom followed her instinct. 

Despite my hurry that day, I am so glad that I chose to take those few minutes to talk with that mom. I can only hope that a seed was planted and that positive changes are on the horizon for her son.  

Moms, you have a wonderful gift of intuition. You know your child. Don’t accept the garbage you are fed if there is any shred of doubt in your heart. Do what you do best and seek the answers for your child. You, like all of us mother warriors, are smarter than your doctor when it comes to your child. Trust yourself.

I’m curious to know how many of you had a similar experience with your child’s doctor. Did they give you the crappy line about waiting, too?

Guest Post: Apples to Oranges

Lori at Apples to Oranges contacted me a little while ago about one of my posts, “A Sneaky Parent’s Guide to Getting Your Child to Take Their Vitamins.” She apparently liked my post enough to ask me for an interview. Lori is a Dietary Coach for children with special needs, so I was honored to participate in the interview and have my post featured on her site.

Please take a moment to click over to Apples to Oranges and read the interview. You’ll also get a nice refresher on my post about how to get vitamins into your kiddos.

TGIF, everyone!

Dusting off the juicer

I love this time of year for 1 big reason, and no, it’s not that the kids are out of school. Does that make me a bad mom? No way! Any autism mom would likely agree that summer is the most stressful time of year because our kids crave routine. For me, the best part about summer is the fact that lots of fabulous produce becomes available.

Here is one of my bowls of harvested spinach.
Many of the leaves are larger than a slice of bread!

I love watching beautiful, organic veggies grow in my garden. In fact, I’ve already harvested several huge bowls of spinach in the past couple of weeks! It’s so much fun to plan the garden and plant my seeds in the spring, knowing that there will be some great things to eat in the coming months.

And, I adore going to our local organic farms and also perusing the wonderful farmers markets to buy gorgeous fruits and vegetables that are far superior to anything I could get at the grocery store. The visual variety alone makes it worth each trip. I fill up my reusable bags with goodies each time I go.

I try to engage my children fully in the process of picking out things to buy at the farmers market. I know that by doing so, they are more likely to at least try a bite of something new because they picked it out themselves. Sometimes they even help me pay and carry the bag while we continue shopping. If they are particularly proud of their efforts, they may also carry the items on their lap as we travel back home in the car.

Even if after all of their participation they somehow take issue with eating the vegetable, they still "eat" it. Oh yes, I see to that! I’m a mean sneaky mom that way.

This is where the magic of the juicer comes in. You may recall that I wrote a post back in January about how to hide vitamins by doing things like juicing. The juicer is a wonderful tool for any parent! In that post I talk about how I make juices like “Silly Strawberry,” which is comprised of kale (or spinach) and strawberries. In fact, I have some organic Italian kale and organic strawberries in my fridge right now that I plan to use for this very juice. Kale is chock full of essential nutrients like: Vitamin A, Vitamin K, calcium, and magnesium, just to name a few.

As long as there is a strong berry or fruit flavor, the “yucky” veggie is effectively masked. You might have to be sly and make the green portion of the juice when your kid is not watching and then serve it in a colored or ceramic cup (with a sippy-style lid or opaque straw). You can add in a reward system to help them drink the new concoctions, too. It worked great for us!

It makes me happy to know that my boys will be getting fresh and organic juice, full of absorbable vitamins, minerals, and enzymes. This stuff is a far cry from the dead sugar water (a.k.a. pasteurized juice) that we buy in the store! It’s time to dust off the juicer and put it in position for heavy use this summer!

Do you juice? What is your favorite juice to give to your children?    

A sneaky parent’s guide to getting your child to take their vitamins

For those of us parents that take the biomedical path in treating our kids with autism, we are often completely stymied as to how to get all of those expensive vitamins and supplements down the gullet of our ever-moving children. This is made even more complex if you have a child who is too young to understand how to swallow pills, or if you have kids like mine that lack the motor coordination to get their tongue to cooperate in the pill-swallowing process. Some day they’ll figure it out. I hope. Sooner than later. Please.

Since I’ve agonized over the vitamin dilemma, I am going to give you some free advice based on the successes I’ve had with this issue. But unlike most free advice, mine is actually good. Trust me.

Things to Consider

1.       Does your child eat anything you put in front of them, no matter the color/temperature/texture/taste?

Okay, so this is sort of a trick question to see if you’re paying attention. I imagine that your answer is a resounding “NO!” Most moms struggle with picky eaters at some point, and that includes moms of neurotypical kiddos. If your answer is no, then welcome to the club. Be prepared to change your game plan as often as necessary. We’re going with the flow here, or at least, we’re trying to make a good effort while our teeth are gritted behind a Stepford-like smile.

2.       Does your child have difficulty swallowing or do they have a strong gag reflex? 

If your answer is yes to either part of this question, then teaching your child to swallow pills should probably wait until they are older or have learned to better overcome their motor/sensory issues. Feeding therapy might be a good idea to aid what you’re already doing at home. If you, like me, do not enjoy your child making the face and sound of a cat coughing up a hairball (rendering any vitamins in their mouth into a slobbery and unusable mess), then just wait to cross this bridge. But, don’t fret! There are things you can do to help your child take their vitamins. More on this in a moment.

3.       Can your child only palate certain textures?

If your child can only tolerate certain textures in their mouth, then giving them the wrong thing could cause a tantrum, hunger strike, flying food, or other ghastly calamity that us worn out parents don’t have time or energy to deal with. You might want to stick with what you already know. There’s actually a lot that can be done with different textures, so hooray for that! And yes, I know you’re still waiting. Patience is a virtue, people.

4.       Does your child respond to rules, a picture schedule, or rewards for positive behavior?

If your answer is yes, then we’ve got even more to work with here. Do not despair! We have options. Let’s check them out now, shall we?