A friend of mine, another cancer mom, recently posted that she went into a store the other day and everywhere she looked was pink ribbons for breast cancer, pink pen’s and pencils, pink this and pink that and it all is all in awareness of breast cancer, but what about childhood cancer? Did you know that September is Childhood Cancer awareness month? I say bring out the GOLD! Where are the gold ribbons? The pens & pencils stating childhood cancer awareness, where are the things and more things…the Gold Ribbon Jewelry? The Gold Ribbon Clothing? The Gold Ribbon Gifts? Where is all the stuff supporting childhood cancer awareness? Look around the next time you’re in a store, I bet you can’t find anything.
One of the most common questions I get is “Amber, how did you know Tucker had cancer? What were the signs & symptoms? “ Maybe had I been more aware of childhood cancer signs and symptoms back in the day Tucker wouldn’t have gotten as bad as he did- twice now. Before I was hit with the bulldozer statement of “YOUR CHILD HAS CANCER” I was blissfully unaware of this life, I had no idea what to look out for and what to be worried about. I was concerned about the normal things that all mom’s worry about- Tucker don’t talk to strangers, Tucker don’t cross the road without an adult, No you can’t hold a snake, no do NOT play with spider they are not pets!…Tucker- time for the dentist…… cuts and bruises, stitches and cold packs, starting school, soothing nightmares & Tucker went through a stretch of eating dirt that had me concerned, the tooth-fairy, Santa Clause, ear infections.. I could go on and on all about the “normal” worries. But never had I paid any attention to childhood cancer, sure I’ve seen it before, we all have, those sad commercials late at night where they show the bald sick kids & ask for donation (but never actually state signs & symptoms of childhood cancer)- and for a brief moment- we feel sad, and then we think… WHEW, GLAD THAT’S NOT MY KID….. hummmmmmmmmmmmm….. and that was all of childhood cancer I was ever aware of. Until January 5th, 2005 & then everything changed. I can look back now and see that Tucker started getting sick long before the day we were actually diagnosed , but that comes with many years of being in this world now.
The one thing I can do to help bring awareness to childhood cancer is to tell you how this all started out… at the time I had NO CLUE what was happening to Tucker but now knowing what I know I can look back to the 3 months before Tucker was first diagnosed and I can see the signs, so obvious to me now, that were not obvious then. I think one of the most difficult things about childhood cancer is the signs and symptoms could be written off as SO many other things, and they were “written off” by other doctors at that time.
Vomiting (what kid doesn’t throw up?- so that was written off as the flu-yes by the “doctor”)
Pain in bones- mostly legs in Tuckers cancer- so that was written off as “growing pains”, I’m 6feet tall, obviously Tucker is going to be tall- so that was a easy write off (yes by the “doctor”).
Excessive busing- Tucker is a boy! He love to play and be rough, all the bruises were written off as just that (also, by a “doctor”).
Constant tiredness- this is what started to get my notice, but then I figured, he does play really hard, I’m sure he’s just tired it goes with the growing pains that the doctor and I had already talked about.
Eye or vision changes which suddenly happen- Tucker already was having eye problems (you’ve seen the glasses? He got them when he was 2).
Now all these symptoms didn’t just BAMB happen one day, it was a period of about 2 months where they started and I took him into the doctor A LOT- but as I stated above, all of it was “written off”- even at one time when Tucker’s leg pains got SO BAD the “doctor” had X-RAY his LEGS to see if they were broke- I remember looking at this so called “doctor” and telling her I THINK I WOULD KNOW IF TUCKER BROKE HIS LEGS! But because I didn’t know anything else we got the X-ray done and sure enough his legs, were NOT broken. Now the last 2 weeks before we were diagnosed I called into this doctor- a lot- because I started noticing all these little purple spots all over Tucker (now I know it’s obvious pitikia), I called and said “what about all these spots? They look like a little rash?” so they said “well obvious it’s a rash, changed your detergent and see if that helps.” So I did, and guess what- it didn’t help. So in rush one night I took Tucker to see a different doctor, and I remember when he walked into the room I said to him “I know Tucker doesn’t have a cough, or a fever and I know he’s not sick, BUT THERE IS SOMETHING WRONG WITH HIM! I’M NOT CRAZY! I’m not making this up! I’ve been taking him to see so&so and this is all we have done & all she has said- but THERE IS SOMETHING WRONG, he’s getting worse”. Taking Tucker to another doctor saved his life- this doctor was wise enough and knew enough by just LOOKING at Tucker to know something big was wrong, he did a CBC and sure enough his blood counts were SCARY! Had the first doctor just ordered a SIMPLE little, quick, CBC on Tucker back at the start, he never would have gotten that far progressed, Acute Lymphoblastic Leukemia is a cancer to your white blood cells, and that pop’s right up in a CBC, well that blood count showed extreme high levels of white cells and extremely low levels” of his red cell and plates- in a matter of an hour had us in an ambulance in transport to Primary Children’s Hospital. Of course by that time Tucker’s cancer had gotten very far progressed and because of that, he was diagnosed with “high risk ALL” on January 5th 2005. I remember before we were rushed out by ambulance that night I had all my family & friends there with me ( I think I called them but I can’t remember), my sister Charity was standing in front of me crying & talking to me and I vividly remember looking at her – I could not hear her talk, I remember looking at her mouth & it was moving in slow motion & no sound was coming out- I remember trying to focus on her, thinking- I know she is talking- but I can’t hear her… and I slowly looked around and other people were talking to me, but I couldn’t hear them… and it was all moving so slow. It was one of the most surreal moments in my life, its one of the most strangest memories I’ve ever had- as I look back to that night at that moment my memory is just like that- everybody was talking in slow motion, and no sound was coming out. From that day on, childhood cancer has been our life. If you want to see how Tucker was diagnosed for the 2nd time (ALSO a frustrating story) you can start back at the beginning of this blog.
My biggest regret back then was not taking Tucker to see another doctor sooner for a 2nd opinion. I kept taking him back to the same lady because I trusted her. Had I known of the signs & symptoms of childhood cancer back then, maybe he wouldn’t have gotten so bad, and maybe we wouldn’t have to be doing this again.
Here is one of the best lists of the signs of childhood cancer I’ve found. I found it at
http://ped-onc.org/diseases/SOCC.html
So read up, be aware- awareness can be contagious… so make sure your spreading it.
Signs of Childhood Cancer
Continued, unexplained weight loss
Headaches, often with early morning vomiting
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent or persistent fevers of unknown origin
Childhood cancer is rare. It is unlikely that your child will develop cancer. Still, as a parent, you need to be aware of the symptoms of childhood cancer.
Observe your child for any sudden, persistent changes in health or behavior as listed above. Since most of the symptoms of cancer can also be attributed to benign conditions, the diagnosis of cancer can be a long process. You must trust your own instinct and work as a team with your doctor, using your knowledge of your child and your doctor's knowledge of medicine to protect your child's health.
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Leukemia
Leukemia is a cancer of the bone marrow, the spongy center of the bones that makes blood cells. It accounts for approximately 35% of all childhood cancers; approximately 1 in 1000 children will be diagnosed with leukemia by the age of 19, although it is more common in children under the age of 10. In leukemia, abnormal white blood cells divide out of control and crowd out the normal cells in the bloodstream. The abnormal white blood cells are not mature, and therefore cannot carry out their infection-fighting function in the blood. These cells crowd out healthy white blood cells, as well as the red blood cells which carry oxygen to the body and the platelets which cause the blood to clot.
Leukemia is treated by combination chemotherapy and sometimes radiation. The five year survival rate for children diagnosed with leukemia and subsequently treated is approximately 70%.
Signs and Symptoms
• lethargy, weakness, paleness, dizziness
• back, leg, and joint pain, headache, trouble standing or walking
• easy bruising, unusual bleeding, frequent nose bleeds, bleeding gums, petechiae (red pinpoints on the skin)
• repeated, frequent infections
• fever that lasts for several days
• loss of appetite, weight loss
• swollen lymph nodes, bloated or tender stomach, swollen liver or spleen
• night sweats
• irritability
A child in the early stages of leukemia may show some or all of the symptoms above. These same symptoms are also attributed to the common flu; this fact makes diagnosis extremely difficult. Each parent of a child with leukemia has a different story of how the child was diagnosed. But, most parents remember that their child was more tired than usual in the weeks before diagnosis. A child with leukemia may seem to be struggling to keep up their typical activity level or they may not have the energy to do even their favorite activities. Many parents report that their leukemic child had an infection or the flu that would not go away. Looking back, they realize that the child had some of the other symptoms mentioned above as well. Many parents report that they had a feeling that there was "something wrong" with their child: they knew that something was not right but they could not pinpoint what it was.
What To Do
Take your child to the doctor. The doctor should:
• check for enlarged liver, spleen, or lymph nodes
• take blood for a complete blood test (CBC, with differential)
The blood test is crucial to the diagnosis. A blood test is relatively inexpensive, and you should insist on one if you have read the above list of symptoms and feel that your child could possibly have leukemia. If your primary care physician will not order a blood test, go to another doctor. Do not wait: leukemia progresses quickly and must be treated promptly.
A child with leukemia will most likely show a blood test with:
• decreased red cells (low hemoglobin count)
• possible blast cells (lymphoblasts, leukemia cells)
• decreased platelets
• a low level of normal white blood cells
• increased lymphocytes
Keep in mind that about 10% of the patients with leukemia will show a normal blood test at the time of diagnosis. To confirm that the disease is leukemia, a bone marrow test must be done.
LOVE TO ALL,
AMBER, JUSTIN & our long time fighter of childhood cancer, Tucker.
