Hair Loss and More

I do not mean to highjack the previous post as I really want to highlight some wonderful blogs and a worthy cause.  However, today has been quite a day.

Sammy is losing his hair again!  I don't know why, except the 6MP and steroids (Dex) have been increased again.  He does not know it is happening yet, and with his feeling unlucky lately (oh just you wait to hear the next installment on THAT), we are hoping it is not too severe and we won't have to tell him.

As for the 'feeling unlucky' phase Sam is going through, I am beginning to believe it too. We already have the broken foot, not being able to walk properly anyway, the frustration of being 'not normal', the bug bite from hell that refuses to go away, the morphine-needing agony of the steroid pulse...oh and the cancer!  Today we added one more:  Sammy has the proud distinction of being the first person ever to choke on the little piece of zucchini the Hibachi chef tosses for everyone to catch in their mouths!!!!

We began with a movie, Kung Foo Panda 2...very fun indeed!  Then took the boys to Sam's favorite restaurant for Hibachi.  Soup, salad, sake....and boom!   Sam was going purple as the zucchini slid right into his mouth and straight down his throat...stuck!  Brian patted his back but didn't see the view I had.  My chair hit the floor as I covered ground faster than you can say "luck" (or some word like that), and then Sam threw up everywhere..the little zucchini piece sitting all alone on the floor thankfully showing me it had come out.  We left with Sammy hysterical, Jack bemused and a little grossed out, and headed home for the much safer option of cereal!

Thankfully Sammy is okay, but he heard the mention of him being the only one ever to have had that happen and he immediately goes into his "Why is it always me?" routine.  I feel the same.....hair, choking and....I really don't want to read much into this but...some raised small red spots on his skin!  Luck...not feeling it today!

Pay It Forward

My wonderful blogging friend S over at Thimbin' My Way has awarded me this lovely gift.  I am delighted a) because S thought of me when passing on the award and b) because the message is one I really believe in.  So much of this journey with Sammy and my family has been one of accepting things; this started a ripple effect as we sought ways to pay it forward to others.

There is a foundation entitled Pay It Forward, encouraging youths to think of ways to make a difference in the world, help someone else,  be proactive not passive.

Because of the message of this blogger award, I am asking something a little different of the five bloggers I award this to.  All they need to do to accept the award is link back to this blog and award it to five others bloggers who they feel deserve the it.  BUT, I am also asking (not requiring) my chosen bloggers to Pay It Forward and include a link to an organization, individual, group, or anyone who might benefit from others knowing about their needs.  Not asking for money, per se, just letting people know about the situation/condition/plight and having them decide what to do about it.

So, please go visit my lovely S on Thumbin' My Way.

Here are my five award winners...check them out and say hello!

Galen over at Ten Steps to Finding Your Happy Place

Lisa over at Home is Where the Heart Is

Dirty Mouth Mama over at Isa's Leukemia, Our Lives

Caorlee over at Come on Home

Jean over at JeanBurman.com

And now for my way of Paying It Forward

Please take a moment to read about my raising awareness promotion:  This is a family in immediate need....the info is taken directly from the Pearl Jam fan club:

Our friend; fellow fan Christopher Lee-Sye (Leathermosquitoman), his wife Nicole and two year old daughter Carolyn lost everything in the tornado that struck Joplin, MO. We’re thankful he & his family are safe, but they lost just about every material possession they had. They’ve been able to find their pet bunny and three cats, as well as some small valuables.
Needs

Chris mentioned their immediate needs include clothing, shoes, gas and food. Gift Cards are super important and can help them obtain these items quickly. Keep in mind toys, pet care items, towels, personal care items and more.
Shirt Sizes:
Chris – XL
Nicole – L
Carolyn – 4T
Pants/Jeans Sizes:
Chris = 32-34
Nicole = 32-34 women's
Carolyn = 4T or toddler size 7
Gift Card Suggestions

- Visa! (can be used anywhere!)
- Target
- Best Buy
- Toys R Us
- Sears
- Amazon

You can send your gift cards & anything else you might like to:
Wishlist Foundation
ATTN: Christopher Lee-Sye
PO Box 3868
Naperville, IL 60567
We will handle sending him the box(es) of comfort in his time of need.
Monetary Donations

If you would like to donate money instead of items, you can send a donation to info@wishlistfoundation.ORG via PayPal (please mark it as a GIFT) with the title message “ATTN: Christopher Lee-Sye” (we can provide a tax receipt)
-or-
you can PayPal Chris directly at chrislee_sye@yahoo.com and make sure you mark it as a GIFT
Direct Shipping

If you want to send something via UPS or directly, you can send it to:
Outback
c/o Christopher Lee-Sye
4509 W. Poplar Street
Rogers, AR 72758
USA
Chris works at the Outback and they are accepting packages for him and delivering them to him and his family.
A message from Chris & his family:

“You guys are awesome…. Thank you for absolutely everything and that the continued love and support is truly amazing. Be proud to be a part of the amazing PJ community. This is truly overwhelming and I can’t express how much things like this helps us to move forward. xoxo”
Chris requests that if you do donate anything, please include your name/email because they would like to thank each one of you individually.
Additionally, you can donate to the Red Cross Appeal by texting “Joplin” to 864833 for a donation of $10, which will be added to your phone bill.


Please share with your friends :)

Nothin' New

Posting has been a little slow lately, mainly because there is not much to post about....or rather, there is nothing bad to moan about!  Sam has settled into week two of his cycle.  The infection seems to have cleared up.  The intense pain has gone away. And the steroid 'screamers' are over.  All in all it's the same ol' same ol'.

Of course life is not a walk in the park.  (Uh oh, here comes the moan again!)  Sam is really sick of things going wrong for him....from a conversation in school today:

"Why does no much happen to me?  Am I the world record holder for unlucky?  I have a broken foot, my arm is all banged up from catching it in the machine (vending machine accident moments before), I have a HUGE bug bite that is driving me crazy, I have to take all this medicine that I hate, I can't play with my friends and run like a normal kid, oh, and I have cancer!"

Seems reasonable to feel like the world record holder for unlucky at that moment, but Momma Bear, a wonderful colleague of mine, told Sammy that he was getting all his bad luck out and he will have more luck as an adult.  He seemed to ponder this, accept it...and then came the clanger...."Can you promise I won't have any more bad luck?"

Whacha gonna say???

Ah life!  It throws us some challenges at times that we just have to ride out.  I have a feeling we are going to crawl across that finish line with the last ounce of our being!

On a good note....and I like to throw those in too as a cancer blog just wouldn't be the same without them...Brian and I are abandoning the kids for 3 nights (staying with very brave grandparents) so we can go to see Pearl Jam's weekend festival.....nothing like getting away from it all :)  House, dog, kids, cats...all taken care of.  First time alone on vacation with Brian EVER....priceless!  Well, us and 37,000+ other people rocking out to great music :)  Even better, I get to finally meet S over at Thumbin' My Way...a blogger/Pearl Jam nut who has helped me stay sane in so many ways :)

A Wake Up Story - Protecting Children from Cancer Causing Chemicals

A Smarter Home

Mummy Radar

My instincts were correct!  Sammy went into the clinic this morning after I emailed Dr. C. to tell him how the night had been.  Sammy had been in pain and awake in that semi-consious state all night...I knew something was not right...deja vu!

Once in the clinic, Daisy whipped us back to get vitals done and immediately put us in a room as Sam had such pain.   The nurse practitioner  said it could be the result of the steroids accumulating in his body, getting more aggressive as they have been in his system for so long now.  The doctor, Dr. G. felt there was more to it and found a red ear along with flushed cheeks.  He put two and two together and came up with infection.  No fever???  Well, Sammy's counts are no longer in the neutropenic range so, just like you or I, he can get an infection without getting the tell-tale fever.

I had the foresight to numb Sammy's chest and finger.  It is a habit I have when we go to the clinic....they usually stick something in him!  It was a blessing because Sam could get accessed and have a culture taken, along with morphine and antibiotics.  He is already allergic to Vecomycin, getting Red Man's Syndrome if it is administerd too quickly.  The doctor mentioned Ceftriaxone and I told them Sam had developed a hive last time he had that (or at least I thought it was that) in the Stamford ER.  The decision was made to administer it anyway and then come to their own conclusions about allergic reactions.  It was, after all the best choice for the situation.

My super guy asked me to go get him some food from the store.  He was about to be accessed so I offered to wait. He preferred I got the food...how comfortable is he with this stabbing the chest thing now!!!   I was very impressed.  Blood could be drawn immediately and a culture is growing to check for a line infection.  We will cross that bridge if we come to it (one day at a time).  Cefrtiaxone given through IV, hives developed, Benadryl given, allergy confirmed, (told ya), and now they had to decide how to proceed in order to best beat this infection.  In total Sammy fashion, he leaned over to me and quietly said, "See, I told you it wasn't the steroid feeling I usually get. I know it was something different."  Can you imagine a young seven year old begin so acutely aware of his own body?  Cancer kids are...they are amazing and will be great people when they grow up.

So Sammy is still accessed with tubes dangling from his chest,  He will return to the hospital tomorrow for more antibiotics, get his weekly chemo a little early, stay home from school as he will be a wreck just from the battery of junk pumped into him, and we will wait for the all clear on the culture.  Another dose of antibiotics will be given at home by mouth.

Monday is a day for kids who are in earlier stages of treatment.  There were so many more bald heads than on Thursday.  It took me back and reminded me of how far we have come.  This is a speed bump...one I caught because my body ached with worry over Sammy's condition.  I love my instincts, I trust them, I will always listen to them.  We are lucky...words I used in my earlier posts...we really are.  Cancer stinks, what Sammy has to go through is too much for a small child, but we are lucky to be where we are now...with a future, a party to look forward to...hope!

Abnormal Symptoms

I was going to post about the weekend..the usual steroid melt-downs, a failed attempt at a family day out (silly me--it's steroid week), and the fact Jacks baseball game was rained out...well cancelled after we waited two hours in the rain!

However, tonight is not following the usual madness we have got so used to.  Tonight Sammy went limp, felt 'strange', and found it hard to walk.  Terror strikes when the usual pain, feelings of every inch on one's body is crawling, and 'screamers' turn into something else.  This was not usual, we don't like things deviating from our comfort zone.

A call to CHAM left us knowing very little.  The doctor on call said she didn't know what could be causing it, it wasn't the increased meds, and we should just wait until morning.  Mummy radar is at full throttle and I am researching all I can about this.  Nada!

So, we will watch and wait...literally.  I'm signing off to go and sit with my little warrior as he tries to get to sleep.  I will stay with him all night if he continues to feel strange.  I don't know how these children do it.  Sammy is putting up with things most adults would never stop complaining about.  All he says is, I wish it would go away.  So do I, my love, so do I!

Just A Little Niggle!

I had the hardest time at CVS last night trying to get all the meds for the cycle.  You would not think a well established pharmacy could mess things up to such an extent. I was there for TWO hours!!!!

The confusion began with me calling in the chemo scripts the night before so they were ready to go on time.  The doctors increased Sam's Dex (steroids) and 6MP due to his increased height and weight.  Brian called the pharmacy to let them know that we needed to cancel the original refills...they seemed able to cope so far.

Next came actually giving the scripts in.  The 'person' (ooh, I'm trying to be nice) took two of them as I tried to tell him about the change in dose and the conversation Brian had over the phone.  He ignored me completely and then told me to come back in fifteen minutes.  I politely told him I still had three more scripts in my hand and he took them from me and said I was done...no adding them to the computer!  As I looked back, he was doing that, so I felt able to go and read the trashy magazines while I waited.  

Twenty minutes later, I lined up at the Pick-Up counter and patiently waited.  My turn came, six bags of meds were handed to me...all was going well.  I ask if I could just check everything...the woman almost spat venom at me , but I 'politely' explained that I always do, it was not her I mistrusted.  Anyhoo, the Dex was the old dose and my meds (allergy stuff) were missing.  I kept smiling (what's the point of showing my disappointment) and ask for the new script...the one I handed in today...to be filled...and my script to be done too.  

Long story short, the 'person' who took the prescriptions earlier had lost my script and had not changed the dose for Sam....not sure how he can do that without ignoring a doctors written prescription, but there you go!  I waited again.  Over an hour went by while they tried to sort out everything.  

Then.....I was called to the counter to hear that they had found my script...it had been put in Sam's name...BUT they did not have the new dose of the Dex.  The woman kindly called around the other CVS pharmacies but no one had it.  I explained that we had to have the Dex for the morning dose...she snapped that I had missed the cut-off for ordering...8 o'clock.  I immediately, but calmly  reminded her  that I had been there since 7:30!!!  If they had got the order correct in the first place, I'd have my meds delivered at least by lunchtime.  Blood was boiling by this point.

Then I asked if we could have the dose given to us in a different form....Sam was to take 6mg per day, breaking it in half so he got 3mg in the morning and again in the evening.  She checked to see if they had other doses...they did...and we thought about how we could make it up to give the correct dose...progress!  Oh!  My prescription had finally been corrected...one and a half hours in CVS!

Then I was told the pharmacist would not agree to give me the new concoction.  Mummy rant about to ensue!  The woman just kept saying they could not order it and I could not have any of the stuff they had.  I never like to bring up Sammy's cancer but I am sure I heard my voice declare.."Your telling me you won't help me give my six year old son his chemo to help him fight his cancer!!!!!"   You could have heard a pin drop.

After a wait, the pharmacist ...I had a new name for him....granted me an audience and asked what was wrong....eh?   Trying soooo hard not to do something illegal,  I asked why he was the first pharmacist in almost two years who wouldn't let us reformulate the dose with the pills they had in stock?  I braced myself for a fight...verbal or physical...but he just smiled and said, "Oh, you've done this before?  Okay, no problem....I just want to make sure you know what to do."  I was speechless.  

Two hours into my visit, I finally paid my co-pays (three figures!!!!) and walked staggered out of CVS feeling drained and confused by the whole experience.  I was a little bothered that I had lost my cool, but very pleased I had not drawn blood.  Brian gets to go next cycle!

Osteopenia and the Orthopedist

Yesterday Sammy fell off his bike, as normal kids do.  Unfortunately, this morning, Sammy was still unable to walk on his left foot so I took him to his pediatrician.  She felt the orthopedist was needed so we hiked (well I carried Sammy) over to Dr. W.  He was very nice and took a set of X-rays....Sammy was an old hand at this!


I was afraid of a break...the news was better than that in some ways, but worse for the long-term.  Sam's foot showed no breaks, but the Orthopedist explained he had quite sever signs of Osteopenia.


Osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are. If your BMD is low compared to normal peak BMD, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop BMD that is very low compared to normal, known as osteoporosis.

Sam's foot was put in a cast as Dr. W. felt it needed protection and would most certainly have some fractures (albeit tiny) due to the osteopenia.  So Sammy chose the red cast and is now thoroughly miserable at the thought of being even more different.  No matter how many times I explained this kind of thing happens to ANY kid...he is too exasperated to take it in.  

I, being me, emailed Dr. C. at CHAM and got the okay for Vitamin D and Calcium supplements.  He also explained that this bone issue usually happens to older children on treatment, but can happen to children Sammy's age.  His words saddened me as he also explained the problem can correct itself, but over MANY years!   

Info on calcium:

Calcium in foods:
Milk (8 ounces) 300 mg
Yogurt (8 ounces) 400 mg
Cheese (1 ounce) 200 mg
Broccoli (1/2 cup) 47 mg
Pinto beans (1/2 cup) 40 mg

If your diet is low in calcium and you are unable to get the level up to 1200 to 1500 mg per day, then taking a calcium supplement pill is recommended. A wide variety of calcium supplements are available at the grocery or health food store. See the following web site for a discussion of calcium pills: www.nof.org
According to a Calcium Calculator, Sam get enough calcium in his diet:
  

7 times a week a	glass, 200 ml	Milk, semi-skimmed
7 times a week a	pot, 150 g	Yoghurt, low-fat, fruit
2 times a week a	serving, 85 g	Broccoli, boiled
1 times a week a	serving, 90 g	Green / French beans
1 times a week a	average serving, 75 g	Ice cream, dairy, vanilla
1 times a week a	portion, 230 g	Pasta, plain, cooked
1 times a week a	portion, 220 g	Macaroni cheese
3 times a week a	9" - 10" pizza, 410 g	Pizza, cheese & tomato

The medicine is obviously the culprit and we need to increase the 'normal' amounts quite considerably, including Vitamin D to boost calcium absorption.  

I am hoping my Superman beats the odds...he is becoming so good at that...and defeats cancer, osteopenia, and the worsening sadness he is feeling.  He will be in a stroller or wheelchair for a few weeks so we will see how things go. 

May Is Brain Tumor Awareness Month

In honor of Asher, a little boy fighting a brain tumor, I am promoting awareness of this disease.  Please link over to Asher's Grandmother's blog, dedicated to Asher, to learn more.

Happy Mother's Day

Wishing ALL mothers a very wonderful and happy day.  From the moment we hear those sweet cries at birth, the day they take those first steps, the first, "I love you, Mummy," and all the magic that comes with that...we are blessed beyond words to be mothers.

Another Day

Well, don't I feel like a bit of a complainer!  I know I have stuff to feel sorry for myself about, but I kinda let loose a bit last night.  Thank you to all those who rushed to my aid and gave me amazing words of support.  I am okay...today is a day without tears and self-pity.  And I certainly didn't mean to imply that cancer moms are the only people who have something to cry about.

Today I took Jack to his baseball game.  He played really well and the team won 11-4!  More on that over at his blog.  Sammy then had swimming.  He was feeling tired from yesterday and tried to get out of going, but we held firm and asked him to do his best and stick to his commitments.  I was so impressed as he glided though the water with speed and power and a rapidly developing style.  He really stands out in a good 'I am not limping with pain' kind of way in the water.  He rocks!

When we got home, I decided to scrub down all the garden furniture, clean the deck, and tidy up outside a little.  There is nothing like hard work to take one's mind off things.  I am knackered and ache all over...it feels good!  Might have termites...but I'll worry about that when I get off this couch to really check it out!

So I know my moaning and groaning comes and goes...and I know I tend to focus on me, rather than Sammy when I do.  I do not have cancer...I do not have treatment, chemo, steroids and pain.  But I cannot climb inside Sam's brain to share his thoughts, so I share mine...open, honest and self-absorbed as they may be.  I try to throw in some details about life as it is, and mix well with a pinch of normal too.

I Cried Today

I don't know what makes a day one of those days, but today was a humdinger of a day.  Last night I was so tired...you know, that tired to the bone, desperate for sleep kind of tired that makes you grumpy and a little high-strung.  Who am I kidding?   I've felt like that for months....it's part of the journey I'm on with my family and dear old cancer!

Anyway, I digress.  So last night, tired beyond reason, I sat in the kitchen comforting my amazingly strong son who had just HAD ENOUGH:  Sam is sick and tired of the treatment, fed up with not being 'normal'.  He says he is not a 'normal kid'.  He says he wants to be able to play and chase his friends at recess.  He says he wishes he had never had cancer, as it is too much now.

I validated everything, no sugar-coating, just plain agreeing with him.  It sucks, stinks, feels like crap, blah, blah, blah.  (My words, not his...."Cancer is stupid" is Sam's release....my real release words would make this blog R rated!  We are getting closer to the end of treatment, but tell a kid he has at least five more months to go and it doesn't register the same way it does to all our well-wishers.  It still seems like forever, and so much of his life has revolved around not being normal (his words).

Sam also showed how much things are getting to him when Leslie, his psychologist, had the session with him in the clinic.  Playing doctor often helps in a therapeutic way.  Sam has a monkey he looks after and often works on 'teaching' the monkey how to cope with the treatments he gets from Sam.  This visit was remarkably different: instead of helping the monkey feel better, Sam stuck the needle in the monkey's eyes, nose, ears...basically anywhere it would hurt, and with no plan to calm the monkey before treatment.

So, back to today:  I drove to school with the sunglasses hiding my tears, blamed allergies as kind colleagues checked in with me, and sucked it up and gave it my all once the students were in the classroom.  Only those closest to me knew what was going on.

This is a crying day....I have them....I will continue to have them spring up and surprise me for many years to come, I'm sure.  I hope Sammy does not continue to have them once treatment is over, and I won't let him know if I do.

Why share this?  'Cos I'm a sap!   No, it's because the people reading this who are in my shoes will relate and understand, they might feel better about their own crying days, they might give themselves a break and let it go...it happens.  I still feel like crying, the day is not yet over.  Tomorrow, however, is another day.

Going Bald!

Sammy spent about nine months completely bald and several more looking like a thin haired mad professor.  One of the less permanent yet most obvious effects of chemotherapy is hair loss.  Now, I'm not talking just about the head...I mean EVERYWHERE!  Sam had  no eyebrows or eyelashes, not a single hair on his whole body.  The bald look is the first announcement to the world that a person has cancer.

St. Baldrick's is a charity which raises money for childhood cancer by asking volunteers to shave their heads in return for donations.  As well as raising money, these new 'baldies' also raise awareness of pediatric cancer though their bold action.  I am so very proud to say that Brian became a 'baldy" to raise money for the charity.
Please visit Brian's Fundraising Page to learn about the charity and see the before and after pictures.