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.


Image Source

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.      

          

Flashback Friday: Financial struggles of autism families

My hubby and I have been poring over our budget recently as we contemplate some things, and I remembered a post I wrote about how autism families earn less. Autism families really struggle with finances across the board, unless you're some sort of a famous bazillionaire.

Like so many of you out there, we are underwater in our mortgage. That is a scary feeling because on paper we have done everything right. We chose not to max out our home's equity and we are very careful with our credit and diligent with our budget.

Back when my hubby lost his job we had to slash and burn our budget just to survive. Let me tell you how hard it can be as a single income household to maintain supplements and a special diet while on unemployment! The sad thing is that when Titan found a new job about 6 months later, he had to take a monumental pay cut.

Financial stress just doesn't stop...especially in this economy. Pile on autism and it can be downright overwhelming.

My hope for you is that you live in a State that has enacted autism legislation in order to pay for therapies. My hope for you is that you are not going in the hole each month despite your best efforts. I hope to someday join you in those more pleasant realities.   

Check out the post I wrote last June and see how researchers have confirmed that our financial struggles are statistically significant.


P.S. Don't forget to enter the giveaway for Kate Winslet's new book, The Golden Hat. The contest ends soon! I'll announce the winner on Monday morning. Good luck!

Flashback Friday: Tax day approaches!

In less than 2 months it will be Tax Day on April 15th. Have you even started gathering together your receipts yet? I spent quite a bit of time this past weekend working on updating all of my records. I was horribly behind in scanning my receipts into my software program. Once I completed that task and got to the nitty gritty of figuring deductions, my mouth dropped open when I learned how much I had spent in the past 6 months on getting my nonprofit off the ground. Holy cow do things add up quickly!

Are you aware of all of your deductions you can take that are directly related to your child's care,  like GFCF food, mileage to doctor's appointments, etc.? Do you volunteer for a nonprofit? You get to take that mileage, too! I know my volunteer mileage is at an all-time high!

I wrote a post last year about some great tools and tips for filing taxes when you have a child with autism or other special need. There are some great resources about deductions you should consider. Since tax time is getting closer, now is the perfect time to review some of this information. Maybe it will help you get a bigger refund!

Check out my post about tax deductions for autism!

  

Guest Post & Interview: Regarding Caroline

Today I am very lucky to have Rebecca from Regarding Caroline with me!  She graciously agreed to do an interview and is also allowing me to share one of her posts. It is a must read!

CAM:  Rebecca, I wanted to sincerely thank you for taking the time to chat with me. I have to tell you that I found out about you and your site through some Facebook friends who were madly posting links to your site the day you posted, “That Would Never Be My Child…” They were right to be sharing your post! You really drew me in as you talked about how you were never going to have that child or that house. I understood it also as not wanting to be that mom. You captured my attention, for sure.

As I continued reading, I found myself nodding my head in agreement all the way through. You spoke about everything so completely and honestly, without judgment or negativity. That is why I felt compelled to contact you to get your permission to post the content on my own blog. My readers needed to see it. I am so grateful that you are giving me the chance to share your advice and a little bit about you and your daughter.

I’d like to start by asking about how things are going at your house right now. How is your family doing?

Rebecca:  Well, first of all thank you for your generous compliments!  Things at our house are going well.  Caroline is 5 and in mainstream Kindergarten with an aide.  She’s such a happy girl who truly loves life.   

There are two ways I look at our situation.  On beautiful days, when the sun is shining and everything is happy, I think about how lucky we are.  For a long time, I doubted that she would ever speak.  Like so many parents, I prayed, “Please, let her talk to me and I won’t ask for anything else.”  I’m grateful that my prayer was answered, but still, on those cloudy, dreary days when we’re stuck inside working on what feels like the same goals we’ve had forever, I’ve been known to forget that promise I made and start to feel sad about all the things she can’t do, such as have a conversation with a friend. We always want to get to that next step with our children, even if they’re typical, which is good, because it keeps us motivated, but also so important to remember from where we came and count our blessings for what we do have.

When she’s not “herself” it always means something is medically wrong.  Recently, she had a rapid onset of new OCD type behaviors and irritability.  With the help of a specialist, we learned that she’s dealing with PANDAS.  It’s been a whole new journey of discovery and healing.  PANDAS is an autoimmune disorder that affects a large percentage of children on the spectrum, but I’ve found that many people are still unaware of it.   After seeing how much Caroline improved with treatment for it, I’m going to have to get the word out!  For her, when we treated the inflammation caused by PANDAS, her eye contact and engagement profoundly improved and other typical ASD traits decreased.  It makes you wonder how many other children on the spectrum could also improve.  So overall, Caroline is doing well.  Thinking about how hard she works to attain what comes easy for most kids, makes us very proud parents.

CAM:  Just a quick note on this – PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. If you are interested in learning more about what happened with Caroline, please visit Rebecca’s post about PANDAS. I also wrote a post about these issues that includes a link to a scientific case study about PANDAS. OK, back to questions...

In Washington State there is insurance discrimination against the autism diagnosis code, which means insurance companies can get away with not paying anything. It’s commonplace and tragic for families like mine. Does insurance cover any of the treatments for your daughter? Do you have any tips on how to pay for treatments?

Rebecca:  We’re fortunate that we live in one of the states that have mandates for autism coverage.  Here in Illinois, insurance must pay for $36,000 of medically necessary autism related therapy each year.  The majority of Caroline’s speech, OT and PT are covered.  It’s important to have a prescription for the services and to use the right codes.  In the beginning we received many denials, but once we got those initial claims paid, we haven’t had problems.  The National Conference of State Legislatures website has a helpful page that outlines each State’s autism coverage requirements, in case anyone is unaware of what their State offers. (http://www.ncsl.org/?TabId=18246)

CAM:  Like many of us warrior parents, you probably have your PhD in vaccines from Google! Do you have any sort of estimate on how much research you have put into the topic of vaccines?

Rebecca:  That’s so true, and it’s too bad we can’t print out Google diplomas after we reach a certain number of hours logged on a topic!  The nice thing about the internet is that it allows us access to scientific journals, Pub Med and sites that allow for serious research into the topic.  The type of research even my former law school professors would approve.  Often times, us parents aren’t just reading the sites that report the stories, we’re reading the research itself.  Research that most pediatricians don’t even know exists, which as you know is the frustrating part!

How much time I’ve spent varies widely.  Right after her vaccines, when I first noticed changes in Caroline’s behavior, I researched them every night until I was exhausted.  I was actually looking for articles to prove that vaccines couldn’t have caused the changes, but I couldn’t find any.  All I found was more and more proof that they did.   I felt so sad and guilty that I had to let it go for a while and start focusing on recovering her.  I took all the time I was spending and put it into researching biomedical treatments.  Then, after she started recovering, and enough time had passed, I was able to look at it again.  Now, I keep up to date, reading new reports as they’re released, but still spend more time researching biomed and educating others.  

CAM:  Have you ever spoken with your daughter’s pediatrician about her vaccine injury? If so, what was the response?

Rebecca:  Our situation is unique because the pediatrician who gave Caroline her vaccines moved away just after her last set, at 12 months.  The pediatrician who took her place has never given Caroline a single vaccine.  She has two children herself who developed seizures after their MMR vaccines, so for her third child she delayed it.  Yes, you heard that right, DELAYED.  That’s how strongly Pharma has convinced these doctors and how little of their own research they do.  She admits she has not read any independent research.  I have given her some and I hope it gets through.  Who knows, maybe like so many doctors with vaccine injured children, someday she’ll become an alternative practitioner. 

The pediatrician who vaccinated Caroline after my continual questioning is now in Minnesota.  Just last week, I requested an email address to get in touch with her because I wanted to send her the blog.  I think she deserves to know.

CAM:  Another note – If your child has experienced a reaction to a vaccine, please contact your doctor and ask them to report it to the VAERS (Vaccine Adverse Event Reporting System) database. Vaccine injuries are notoriously underreported, so if you see any behavioral or physical changes following a vaccine, it is important to get those documented so that you retain your rights to access the vaccine court, should it be warranted. Now, here is the last question.

If you could boil down your experience into one nugget of wisdom, what would you like to share?

Rebecca:  Wow, that’s a tough one.  If I have to choose just one, I’d say “Stay the course.”  It seems that sometimes parents try biomedical treatments or the GFCF diet briefly and think, “Well, that didn’t work.”  Almost as if they don’t want it to, because, well, honestly, in the short term, it’s easier that way.  I know the feeling well!

The problem is that many of the things we’ve done with Caroline have resulted in only subtle changes, but over time and combined with others, they amount to a remarkable difference.  Miss a step or two, or three and she would not be where she’s at today.  An example is how many children need to also be soy free or even grain free for “the diet” to help.  If those things are not tried, an opportunity for healing and recovery might be missed. 

To be sure I don’t ‘abort mission’ too soon, I try to understand the science behind what we’re doing.  Knowing why something should work helps me to be more invested in it, increasing the chances I’ll stick it out and ultimately that Caroline will benefit.   

CAM:  That is excellent advice! I, too, have seen many families give up on new things too quickly. I think it's hard for parents to be patient because it seems like we are all in a rush to survive our current crisis, whatever that may be. We want to see positive changes yesterday! It can be very hard to have a little faith in something when the changes are slow and subtle. This is where good record-keeping or journaling can help you understand where your child was before, during and after a new treatment.

Before I launch into your post, I wanted to share my absolute favorite thing you said:

“That would never be my child,” was the rationale that resulted in my ignorance. An ignorance for which I paid an incredibly steep price. The life of my child was changed forever. Much of her childhood has been spent seeking recovery and the guilt I feel will never be lifted.

Rebecca, your words mean so much. I can only hope that more people will take those words to heart as they make choices for their children. Thank you for being here today.  

Rebecca:  Thank you for taking the time to ask such thoughtful questions and for sharing our story!

CAM:  Please visit Regarding Caroline to learn more about Caroline’s journey, get some great links, watch Caroline’s recovery video, and much more. You can also “Like” her page on Facebook.

That would never be my child...

Although Caroline is 5, it seems like only yesterday I had a life that was my own and was so blissfully unaware of the demands of motherhood, that when witnessing a screaming child in a restaurant I'd think, that would never be my child.

And when I was pregnant, visiting a friend's house where dolls and toys were strewn about every room, I insisted to myself, that would never be my house. In fact, I didn't want colorful, plastic anything. The thought of a high chair disrupting the clean lines of my stainless and glass dining table caused me tremendous anguish.

Needless to say, I've come a long way since then... and I have a house overrun with toys, games and stuffed animals to prove it.

So "Why is it," new moms often ask, "that they don't tell us what it's really like having kids before we have them?"

Honestly, I can't say no one did. People do, we just don't listen.

We're too busy living our fabulously free lifestyles to begin to contemplate what true sleep deprivation actually does to one's mind or to comprehend how it will feel to have the 60 minutes we spend getting ready dwindled down to 5 (if we're lucky).

We may hear the words our friend is saying - but subconsciously we think - that would never be my child. My child will sleep through the night and be easy, beautiful and perfect.

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?