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This disease is really hard on parents, too. Here are some suggestions and
ideas that might help you cope, and help your little one thrive. If you have
suggestions or tips, please
send them to me!
 | Teach them how to take pills!
 | Oh, the stories I could tell. Many of the oral medications taste
really bad (try them yourself). It will take patience, but if you
can teach your little one to take pills, it will do wonders. We read
and tried all the different ways we could find. None worked. So we
created our own. Here's what worked for us. |
| Your goal: to have them WANT to take the pill you NEED to give
them. Gather something for every family member to swallow, like a
vitamin, or your own medicine. Have everyone huddle around the
dining room table. Say, "Medicine Time, will you help me?" One by
one, have your child give every other family member their medicine.
First, "Mommy's turn! Put it in my mouth, Logan." Everyone yell,
"Don't chew, Mommy! Just swallow." A big drink, and then Mommy opens
her mouth wide and says, "All gone!" Then, "Daddy's turn!" and
repeat the drill for every family member. Save your "target child"
for last. With any luck, your child will yell what ours did, "My
turn!" |
| Goal: get them to swallow the medicine without chewing. Face
your child. Put pill on your RIGHT thumb. Insert your thumb into
their LEFT cheek. Slide the pill along their cheek and behind their
molars. At this point, they'll open their mouth. Finish by sliding
the pill into the LEFT corner of their throat. Pull your thumb out.
Give them a sippy cup of water. Logan now looks up and says, "All
done!" |
| Goal: reward them! Cheers! Hugs! Stickers work wonders, with one
for his shirt and one on the calendar. He soon learned how many he
needed in a day, and he wears the ones on his shirt like a badge of
honor. |
| Goal: to hide the taste of a nasty drug (like Prednisone) by
coating it in candy. Take a Starburst candy out of the wrapper, and
heat it in the microwave for 10 seconds. Pinch off just enough to
smash into a pancake between your finger and thumb. Wrap the pancake
around the drug so that it's completely encapsulated, but not much
bigger then the original pill. Remember, they have little throats! |
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| Be your child's advocate
| No one in the world cares as much about your
child as you do. You need to look out for their best interests,
since they are too small to do so. Learn about the disease. Ask lots
of questions. Track their blood test results. Ask your doctor about
results that aren't in the "normal" range, especially when there is
a trend in the results. Get a copy of the LCH III protocol and read
it. Ask your doctor about their knowledge of the disease, how many
cases they've treated, and if they consult with other LCH experts. |
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| Involve the siblings
| It's easy to focus all your attention on your child with LCH.
Their siblings will feel left out. Enlist their help! From giving
med's to checking ports, our 4 year old (Erik) is eager to help with
everything for his little brother. Erik also knows every component
of blood, and their respective function. "Chemo Crusader" is a great
book for kids to read. We got our copy from the Hem-Onc office. |
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| MediPort
| This was placed in Logan's chest for his Vinblastine. Aside from
our recent debacle, I'm an advocate of these ports. They make
drawing blood and giving chemo and any other medicines so much
easier with less (or no) pain. |
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| Glad "Press and Seal"
| If you have a MediPort, the hospital will give
you Emla cream to numb the skin. They also give you some very sticky
bandages to put over the cream, which irritates the skin when pulled
off. A tip from a nurse: We put the Emla cream on Logan's port, then
put a square of Glad "Press and Seal" over the cream. It peels off
very easy (Logan pulls it off himself) but stays on well enough so
the Emla cream doesn't ooze out. |
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| "Magic Foam"
| After your MediPort has been accessed, the nurse
will tape it to your chest to keep it in place. The worst part for
Logan has always been when they removed the tape. It really hurts
the skin! One of our nurses showed us a trick to take the tape off
with no pain. You know the cans of foam they hang on the wall in
your hospital room... the ones to sanitize your hands... If you foam
up the edges of the tape, and then let it sit for maybe 5 minutes,
the tape will fall right off. At the very least, it will loosen the
adhesive and you'll be able to rub the tape off with your
finger-tip. We told Logan that we were turning his port into an ice
cream sundae and the foam was the whip cream. We'd lay him on his
back, foam up the tape on his chest, and then distract him for a few
minutes. A year ago he would scream, yell, and cry at the mere
thought of having his tape removed. Yesterday at clinic he didn't
even notice. |
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| Give them choices
| With all that's done to them, your child will quickly feel like
he's just taking orders. Give him choices, even simple ones. "Do you
want a Clifford band-aid, or a Scooby?" Think for a minute, and you
can give him simple choices for most anything. It makes a big
difference. |
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| Don't treat them like a "sick kid"
| Tough to do sometimes, but if you treat them like a "sick kid,"
they'll start believing and behaving like a "sick kid." |
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| Network with other parents who face LCH
| There's no easy way to say this. Unless someone has faced the
possible death of their own child to a disease like this, they
cannot understand all the thoughts that run through your head and
all the emotions you feel. Seek out other parents that face LCH.
Teach them and learn from them. |
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| Focus on the positive
| Easy to say, very hard to do at times. As you see on this
website, I have a list of successes we've experienced. It helps to
review these and remember that we are making progress. Each day we
are one step closer to "No Active Disease." Donna and I use the
phrase, "It's just a road block." When we use this phrase, bad news
or a set back is no longer insurmountable. It's just a challenge for
us to find a solution. |
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| Contribute to the cause
| It's the parents that will push this along to critical mass and
a final cure. Remember, this is an "orphan disease" with no
government funding. Many doctor's aren't aware of this disease, and
have never experienced it in their practice. Whether you raise
funds, help other parents, work for a doctor researching LCH,
educate the public, or get on "Oprah" to spread the word, please
find a way to contribute to the cause. It will help your child, it
will help other children, and it will empower you. |
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| Learn about the disease
| A lot of information is out there. It really helps to learn
about the disease, so you can make informed decisions and understand
what's going on. |
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| Find your role
| My role is the information gatherer. I have blood tests graphed,
medical records on Flash disk with me at all times, websites
bookmarked, etc. Donna is the spiritual leader and keeps us focused
on the positive. She is also an expert at sneaking great nutrition
into all of us, especially finicky 2 year olds, We are both research
and case history readers. Donna has the photographic memory and can
remember every study and treatment protocol. We are both still searching for our long
term career roles as they relate to this disease. I know it will have
a big impact on the next career we each choose. |
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| Likely a lifelong disease
| Jeff Toughill, President of the Histiocytosis Association of
America (HAA) said it best. "Our daughter has been disease-free for
nearly 20 years. I'm still waiting to exhale. I don't think I ever
will." Even after we each get our child to "No Active Disease," we
need to be vigilant in watching for recurrence. Learn the symptoms
and watch for them! Stay up-to-date on the disease. |
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Have you just been diagnosed?
Right now is your worst time. You have lots of questions, lots of
fears, and a whole lot of unknowns. It's nice to talk to someone that
"gets it." Find an LCH family on the web that has a similar diagnosis to
yours and contact them. You can contact us, scan through the other
family links, or check the
Histiocytosis Association of America website.
You will likely soon be asked to decide whether or not you want your
child "on protocol" or not. At least, you SHOULD be asked.
Unfortunately, many doctors just gloss over this, or make the decision
for you. Clinical Trials are absolutely critical for a rare disease like
Histiocytosis.
Here's an article by Dr. Whitlock to give you a much better
understanding.
I will now climb on my soapbox and give you a parent's perspective.
Unfortunately, we didn't understand the importance of protocols until AFTER Logan
started treatment. Because we were uninformed, we elected NOT to put
Logan on protocol, and we've regretted it ever since. No one learns from
our children unless they are on protocol. Since we elected NOT to go on
protocol, and then started treatment, Logan can NEVER be on protocol, meaning his information will
NOT be part of the LCH III study results. One of the big reasons we
moved to Dr. McClain and Texas Children's Hospital was because Dr.
McClain sees many LCH patients,
around 40 new cases a year. (Many Hem-Onc don't see any in a whole
career) Dr. McClain is on the board for creating the next LCH protocols.
By having him treat Logan directly, we thought some of the experience he
gained from treating Logan could go into the protocols for future
children.
After more investigation, we also found that most hospitals don't put
their LCH kids on protocol because its "a bunch of extra paperwork for a
rare disease," and it takes 3-6 months and a review board. Hospitals
that don't see a lot of LCH don't go through the process. Logan (and
your child) are suffering because the doctors of the past were too busy
or too lazy to put their kids on protocol. Do you want them treating
your child? It seems that hospitals and treatments are often about the
bottom line. And adding a whole level of extra paperwork and another
review board for a rare disease doesn't add to the bottom line.
If you haven't noticed, it's something we feel very strongly about.
Here's another reason why. Protocols are cancelled because too few
doctor's sign their kids up for the studies. As an example, in 1998 the Histiocyte
Society initiated a prospective international study of LCH-CNS (central
nervous system/brain involvement), something that Logan and many other
children face because of their skull tumors. After FOUR YEARS the study
protocol was closed because they couldn't get enough children signed up.
I think they were only trying to get 27 kids, and they were still short
4 children after 4 YEARS! What would we have learned from that study 8
YEARS ago, and how would my son's life be different? How would your
child's life be different? We'll never know, and that's a very sad
commentary on how our medical system is currently organized. So LCH CNS
has barely been studied. That's just wrong. And who's penalized? My
child. Your child. My family. Your family. And all the other LCH
children and their families.
Please do something we were not in a position to do. Please be
informed. Please be educated. And please have a good discussion with
your doctor regarding the pro's and con's of protocol. If we were able
to do it over, we would have INSISTED on protocol. If the current
hospital didn't offer it, we would have consulted with a hospital that
did, or we would have moved to a larger hospital that did.
Here is
a list of those hospitals. If your hospital isn't on it, I would
have a frank discussion with your doctor about consulting or referring
your child. Our previous Children's Hospital isn't on this list. Our
current hospital is.
Strength to your family and your child. Wisdom for your doctors. If
we can help in any way, please contact us. PS: If you or your child is having a biopsy of a
suspected histiocytosis site, please Please PLEASE
contact me to get a portion of that tissue donated to Dr.
McClain for his histiocytosis research here at Texas Children's
Hospital. This is one thing that could really help in the battle
against histiocytosis.
There's no cost involved, and the tissue would normally just be
thrown away.
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