Childhood Cancer Awareness

Well, I know some of you are going to think I'm ungrateful and should stop whining with this post...just be grateful for what I have, and shut up!  But I can't.  I really can't.  Right now, as I type, Sammy is putting together his Millennium Falcon Lego set all by himself and looks adorable with his shaggy long blonde hair and unfairly long eyelashes.  At school the other day, he swung from the monkey bars, showing off his latest accomplishment, hanging upside down and then pulling his own body weight up with his new-found upper body strength.  It is like cancer never happened...except it did...and Sammy is a normal boy again.

But...and this is where you may want to tell me to shut up moaning...if I hear one more person tell me I can put cancer behind me, move on, and try to forget about it all, I may just punch them!  A little harsh I know, but here is why I can never forget or put it all behind me:

Yesterday was my anniversary.  I did not spend it with my family, but at CHAM 9. Yes, many of you will remember that is the floor the cancer children go to for treatment and for neutropenia/infections/complications etc.  It is not the day clinic.  It is the floor Sammy spent most of his first year on, mainly because his body was so ravaged by the chemo, he was constantly neutropenic.

I was not at CHAM 9 with Sammy,  He doesn't even know I was there because I was visiting G, Sammy's cancer buddy.  The little boy who had the same leukemia as Sam and had the same treatment.  He was our guide as he started treatment a couple of months before.  He got better and showed us how great being done is.  Now he sits in CHAM waiting for his counts (ANC) to get above zero.  He is neutropenic from the chemo of his new protocol. He has relapsed and needs a bone marrow transplant.  He has leukemia again.

As I stepped out of G's room to give his some privacy for a moment, I noticed the mom of a very special 4 year old standing by the nurses station.  S has a brain tumor.  She has had surgery and probably needs another as only 2/3 of her tumor could be removed.  She has a scar on her bald head from ear to ear.  She is doing well but her cancer is very rare so everything is unknown.  There are no statistics to comfort her parents.  Not that anyone can go by that as G shows.

I know S and her family through the wonderful families at school.  It was her mom's cousin who helped organize all the SuperSammy t.shirts for his fundraiser.  Now she has made up the same shirt, in a different color, for S.

We try to make cancer go away for Jack and Sam.  I know it will be with them forever because it was such a traumatic time in their lives.  However, they deserve to put it behind them and live happily ever after.

As adults, we can do the same.  But how can we ignore G and S?  How can the faces of those who lost their battle ever leave our memories....and why should they?  We honor them by fighting to end cancer.  We honor Sammy by fighting to end cancer, even if he never experiences it again.  We cannot turn away.  We know too much.

Awareness is key.  The more people who know about childhood cancer (any kind; I am way beyond just leukemia now), the better.  Not because they might donate money to a cancer charity which conducts research (although it helps) but because they might tell a few people and raise awareness too.

I am not asking for anyone to live with daily thoughts about children with cancer.  I am hoping more people come to understand how 49 children are diagnosed each day in this country, and 7 will die.  Then, maybe they won't tell me I can forget about it all and move on.  Maybe they will ask how they can help children with cancer because they realize I may well know what they can do!

Here is Sammy's Team page for his Walk for the Cure.  If you would like to join his team, make a small donation, or pass it on to friends, you will be helping to make the difference and save lives.

Team SuperSammy

Immunization Schedule - Again!

Sammy had the first of his immunizations last Thursday.  He has to have everything again and the immunization schedule is quite aggressive.  The poor guy had to have three...ouch!   I have to say I put up a fight.  I will immunize my kids as the alternative (getting the diseases) is worse, but I strongly hold out against bombarding children with multiple shots.  On top of that, one of the shots was the MMR (Measles, Mumps and Rubella) that has caused the uproar about its possible connection to autism.

I was not gentle with Brian whose turn it was to go to the clinic.  I was strongly voicing my objections down the phone at him but the outcome stayed the same.  The CHAM doctors feel that, because Sammy has absolutely no protection from any of the diseases, it is better to do as many as they can, especially as he is in school.  I get it, I really do...but I don't have to like it!

Sammy was not a happy bunny either.  He was brave (isn't he always) and took the shots well.  But the muscles were very sore afterwards and that is when he fussed the most.  He did go straight to school afterwards, and played well at recess.  I tried not to be a helicopter mom and stayed away, just checking in with Mrs. F, his teacher, now and again.

Each visit will entail an average of three shots for the next 5 months.  This stinks as, once again, Sammy has to be subjected to needles.  He was most disgruntled that he couldn't have the shots into the vein or into his port!  My how far we have come!  Here is a seven year old preferring IV's and 'hooked' needles jabbing his chest!  Chemo kids are TOUGH!!!

Good news on the blood-work...all is as it should be.  We are not looking at relapse so I cannot complain.

We learned of a new SuperKid at Cham, one connected to us through the families at our school.  SuperSophia is battling a brain tumor.  She has had the Superman Sammy t.shirt redone in pink and purple - the Dora colors, and now CHAM 9 has a new t.shirt to rock!  Please send Sophia all your love and prayers.  She has just turned 4 and is a beautiful princess with the bravery of a lion!

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.