Posted in Bethany's Health Updates

Bethany’s Bad Blood Test

Hi everyone, it’s been awhile, but we’re back now!

Bethany recently had a routine annual check up and she had blood drawn.

Unfortunately, her blood test came back showing that her white blood cell count was too low and so her doctor wanted her to come back to get another one.

Thankfully for us, Bethany likes getting blood tests!!

You know, when you’ve had a kid with brain cancer and you find out her white blood cell count is too low, you naturally think the worst and of course, google all the reasons why that might happen!

Leukemia or lymphoma is what my google search revealed as the most common reasons for a low white blood cell count.

My husband and I were worried to put it mildly.

As it turned out, we really had nothing to worry about, because her second test was normal!

Apparently, one of her medications can cause the low count and so can infections and viruses!

So, anyway, we are grateful that she is okay!

However, my husband also had a blood test and his PSA count (Prostate Antigen) was slightly elevated!

He is now waiting on his second test results.

Since his father had prostate cancer and mine died from prostate cancer, I am worried about that!

So, please keep him in your thoughts and prayers, thanks!

If you’re interested, you can watch our blood test vlogs below or on our YouTube channel, Adventures of an Autistic Brain Tumor Survivor

Thanks so much for stopping by!

Posted in Autism, Bethany Moments, Bethany's Health Updates

Ten Hints on How to Prepare your Child (and yourself) for an MRI

* A version of this post was previously published on 7/2/13. This post contains affiliate links. MRI machine photo credit: Renjith Krishnan/ freedigitalphotos.net

A reader recently asked my advice on how to prepare for her daughter’s upcoming MRI.

First I want to say that I am not an expert on this subject.

I can only relate to you my experiences with Bethany going through her many MRI’s!

I am going to be totally and brutally honest here.

I dread MRI days!

I begin having anxiety the second the doctor’s office calls to tell me that Beth’s MRI has been scheduled.

Bethany has been having annual MRI’s since 2000.

Now she has graduated to one every other year for the remainder of her days.

This is the recommended protocol for the type of brain tumor that she had.
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Bethany has always needed to be anesthetized for her MRI’s because she is not capable of holding completely and utterly motionless for 45 minutes.

Being totally motionless is the only way to get an accurate picture of whether or not any cancer is growing back.

For this reason Bethany can’t eat or drink anything on the morning of her MRI.

She must wake up super early- like 5:30 so we can get to the hospital in time.

She is not a morning person and is very much stuck in her morning routine so waking up early and not eating are two strikes against us.

She will not be in a good mood.

In fact, this usually puts her in a violent mood.

One time Bethany flipped out in the parking lot and hospital security had to be called.

We couldn’t get her calmed down enough ( even with sedation) so the MRI was postponed.

Talk about dread and anxiety remembering that disaster.

If you looked up dread and anxiety in the dictionary that day you would have seen my face on the page!

After that harrowing experience we began figuring out ways to make MRI days a little easier on all of us and the next MRI went pretty well.

At least there was no need for hospital security to be called!

  1. Try to prepare your child for what he or she will be going through using social stories.  I have a hunch you’ll have to make up your own.  We usually draw or find appropriate photos and create a wordless book for Bethany to help explain any upcoming medical procedures to her.
  2. Pray and pray some more.  Ask all your friends to pray and pray some more.
  3. Ask your doctor if it is appropriate to give your child something to keep them calm before you leave home on MRI day.
  4. Wake up and try to get out of the house as soon as possible to avoid food and drink issues.
  5. If your child is motivated by rewards  and can handle delayed gratification definitely do promise a special treat in exchange for cooperation.
  6.  Never go alone to MRI day.  Bring a helper.  My husband always comes with us and this year we are asking Bethany’s respite aide to meet us at the hospital entrance.  The sight of Mary always puts her in a happy good mood.  I hope it works in this instance too!
  7. Bring diversions (like iPad) to keep your child occupied while you register and then hurry up to wait.
  8. Ask to accompany your child into the MRI room until she is “out”.  *Warning:  Your child being put under is not a pretty sight.  He or she will appear frightened and may fight.*
  9. Ask to be waiting in a PRIVATE recovery room so that the first person your child sees when he wakes up is mom or dad.  *Warning: Your child may react violently upon waking up from anesthesia as some children do including-you guessed it- Bethany!* Thus the reason for a private recovery room.
  10.   Get out of the hospital as soon as possible, get your child the promised reward and do something fun!!

That’s it!  That’s my meager advice!  That’s all I have to offer you!

How about you?  Do you have any ideas or advice  to offer us that might  help MRI day go easier!

After her latest MRI on 8/28/13- She behaved and cooperated like a perfect angel!
After her latest MRI on 8/28/13- She behaved and cooperated like a perfect angel!

You might also be interested in I’m so Thankful Our Bi-annual MRI is Done!

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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at not extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Enter your email address to follow this blog and receive notifications of new posts by email.

Posted in Bethany Moments, Bethany's Health Updates

I’m Thankful Our Bi-Annual MRI is Done!

*A version of this post was previously published on 8/30/13. This post may contain affiliate links.

This Friday finds me very thankful that Bethany’s bi-annual MRI is over and done with!

The afternoon that we were scheduled to check into the hospital’s Hannah Lee House, a very stinky and greasy Bethany kept refusing to take her shower.

When the time finally came that she absolutely had to take her shower that very minute or we’d have to cancel our reservation at Hannah Lee House, she went ballistic- kicking, slapping, and grabbing onto furniture as we tried to move her into the bathroom!

By the way, just in case you were wondering, Hannah Lee House is a place where cancer patients and their families can stay while undergoing treatments.

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Honestly, if Bethany hadn’t skipped her shower the day before I would have just said forget the shower and gone anyway, but she was quite gross.

There was no way that we could have taken her in for her MRI in such a stinky condition and I couldn’t be certain she’d submit to taking a shower at Hannah Lee House either.

Based on Bethany’s violent reaction to the idea of taking a shower,  I was pretty sure we’d never be able to get her into the car to go that night so I canceled our reservation at Hannah Lee House.

I was distraught and deeply discouraged.

I didn’t know how we’d ever get her to the hospital by 6:30 a.m. without having food and routine issues if we didn’t stay over night at Hannah Lee House where she had no access to food and wouldn’t expect to follow her normal morning routine.

I thought I had prepared her so well. I had even put together a (very crude) social story book for Bethany in an attempt to explain to her what was going to happen on MRI day.

But I hadn’t included taking a shower in the book!

It’s so hard to think of everything!

The pages of her MRI book. Page 1 and 2 are her current favorite breakfast foods with a red "no" circle over them. (She could not eat before the procedure.) Yes she eats grilled cheese and spaghetti for breakfast! Page 3 is a picture of the hospital. Page 4 is a picture of Bethany lying on the MRI machine. Page 5 and 6 are the rewards (foods) she would be allowed to eat after her MRI was done.

Miracle of miracles, we did somehow eventually managed to persuade Bethany into taking a shower!

After her shower, her switch flipped and she became happy and cooperative!

(I had been praying and pleading with God to change her attitude!)

Malcolm thought he’d give Hannah Lee House a call and ask if we could still come and they said yes!

Then Bethany calmly and quietly got into the car and we were on our way!

Since we wanted to give Bethany an immediate reward for finally cooperating and she could eat until midnight we decided not to make her wait for her reward of either a Subway sandwich or some Pizza Hut pizza.

When she finished her meal we checked into our room where she continued to behave beautifully.

She got ready for bed and watched Stuart Little 2 and Baby Bop’s School on her little DVD player just like she always does at home.

Then she fell asleep.

Easy Peasy!!

The next morning we woke up at 5:00, packed up the car, drove to the hospital and registered Bethany for her MRI by 6:30 without a hitch.

Then we proceeded to wait until 8:00 when she was finally called her in for the procedure!

Why do they always require you to arrive so early only to make you wait so long?!

Waiting around is most definitely not a strength of Bethany’s and I was getting worried she’d used up all her goodness waiting, yet she continued to behave herself!

While waiting, I filled out a medical questionnaire and then proceeded to answer the same exact questions for three different medical professionals!

The anesthesiologist finally arrived and insisted on doing a pregnancy test on Bethany!

I was shocked when she agreed to pee on demand!!

He was very apologetic about requiring it, but explained that too many times after the procedure is over parents discover that their daughters had been pregnant then filed lawsuits against the doctors for not performing a pregnancy test first!

Well, guess what…surprise surprise Bethany isn’t pregnant!

Throughout this whole ordeal Bethany behaved like a perfect angel!

She continued to cooperate even after waking up from the anesthesia, which has not always been the case!

We have never had an MRI appointment go so smoothly without major behavior problems before!

All I can say is, “Thank you, Lord for helping us make it through one more MRI!”

Now that my MRI procedure anticipation anxiety is over I have transitioned into my waiting for the MRI results anxiety phase!

And I am over the moon ecstatic that Bethany’s doctor’s have decided that this MRI could be her last one unless we suspect any problems in the future, that is!!

*2018 update: Bethany has never needed another MRIand is still brain tumor free!

You might also be interested in Ten Hints on How to Prepare your Child (and yourself) for an MRI
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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at not extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Enter your email address to follow this blog and receive notifications of new posts by email.

Posted in Bethany Moments, Bethany's Health Updates

Bethany Tested Positive For…

As many of you may know, Malcolm and I have been super concerned about Bethany’s behavior the past few weeks.

Sadly, she seems to have reverted back to how she was feeling before she started taking the anti-depressant.

At first, the medication seemed to be working.

She was happy, active, and interested in life again.

Now, although Bethany has had some good days during the past few weeks,  for the most part, she’s back to lethargically lying on the couch all day again.

Lyme's disease

This post contains affiliate links.

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When Bethany first began attending her new day hab program she loved it!

Everytime the bus pulled up, she was excited and eager to go.

But after 4 or 5 weeks she suddenly lost interest and refused to go anymore.

For the past few weeks, she also hasn’t wanted to go shopping, to the library, to the movies, or even to Taco Bell!

Heck, Bethany has even refused to go to her beloved Flash Club three or four times in a row now.

Since Flash Club is absolutely and positively Bethany’s favorite thing in the whole wide world, we know there is something very wrong when she doesn’t want to go to there!

As I lamented and contemplated all of this one day, I came to the realization that Bethany is not depressed and probably never has been.

She really is just plain old sick, tired, and exhausted.

I now believe that we were all mistaking her lethargy and exhaustion as being depression.

After my brilliant epiphany, I wanted the doctor to test Bethany for some illnesses that I thought she might possibly be suffering with.

Because, although Bethany can talk, she doesn’t seem to have the ability to let us know if her ears or throat hurts, for instance.

So I asked the doctor to check her for an ear infection, sore throat, and a urinary tract infection.

Because Bethany had recently lost some weight, I also wanted her seizure medication levels checked as well.

I really thought her med levels might be too high, thus making her tired and maybe dizzy or light headed.

The doctor also wanted to test her for mononucleosis.

And at the very last minute,  for some reason, I thought of how much Bethany loves getting out in the yard to search for bugs and caterpilars and it suddenly dawned on that we should test Bethany for something else and the doctor agreed.

One by one Bethany’s test results came trickling in and they were all negative.

Surprisingly, her seizure medication blood levels were all in the normal range, too.

Then the very last test result came back and it was positive!!!

Bethany’s test results revealed that she is infected with Borrelia burgdorferi.

Borrelia burgdorferi is Lyme Disease, my friends!

My sweet girl has Lyme Disease!!

So, Bethany has been acting sick and tired, not because she is depressed but because she really is sick and tired!!

She has not been faking illness or exhaustion to get out of doing things she doesn’t want to do as some have hinted at!

Nor have Malcolm and I been letting her get away with anything, as some have also hinted at!

You know what else I’m also sick and tired of?!

I’m sick and tired of outsiders thinking the worst of Bethany and I’m sick and tired of people accusing her of being a fakerr!

I should have learned this lesson a long time ago, but better late than never I suppose!!

Bethany is not a master manipulator or a fantabulous faker!

When she acts sick and tired and refuses to engage in all the activities she normally enjoys…

Then guess what friends???  She is sick and tired!


For more information about Lyme Disease please check out, Lyme Disease Support Network.

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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at not extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Enter your email address to follow this blog and receive notifications of new posts by email.