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These tips are from personal experiences only - are not in any way professional opinions.
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Have a packed bag ready for a quick dash to the hospital
Chemo and radiotherapy may cause some unexpected side effects at times and you may find yourself in need for an emergency trip to Hospital - so have a bag packed just in case of such an emergency (and hope that you never need it).
Include items such as:
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Carry an up to date list of Child's medications in purse
Whenever there is an admission to hospital either for a planned treatment or emergency admission, you will be asked to answer some routine questions. One of which is to list all medications your child is on. Some of these medications are hard to pronounce when you have had adequate sleep with no stress!
I was often glad of having this list, I always had a copy like this in my purse - I could just hand the list to the admitting nurse, leaving me to do more important things - like care for my baby.
The list was also helpful if I had to leave my child in the care of my parents, if they needed to take the child for an emergency run to hospital they could give this information to the hospital (I also had a list in my child's school bag, just in case).
On the list I had names of drugs, doses, strengths and times. I also had notes on how the medication was mixed and given.
I remember once overhearing a conversation between a mother and admitting nurse, the nurse had asked what medication the child was on. The mother was describing the pills by colour and size - having the list makes life easier for all - and safer for your child.
Please ensure you keep your list up to date
Date each updated list, so there is no risk of confusion
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Don't ask your child if they would like to take their medicine
If given a choice what Kid would want their medicine? So don't ask if they would like their meds, ask something like....
.....Would you like Water or Milk with your medicine?
.....Would you like an apple or a piece of cheese to have after your medicine?
I don't know how many times a nurse walked into our hospital room armed with medicine for a 3 year old, the conversation would go something like:-
Nurse: "Zac, would you like to take your medicine now?
Zac: "No thank you" and continues on with his business
Nurse: "well sorry Zac, you have to take your medicine".
Zac: Gets angry and upset - he doesn't understand, he said no politely!
Kids will get angry whilst under treatment for a variety of reasons. Some of the drugs are known to promote irritability - so don't make it worse by giving them a choice then ignoring their answer.
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In case of emergency, find out which hospital your ambulance will take you
You have your bag packed ready for the unexpected dash to the hospital, now if you called an ambulance where will it take you?
It turns out that in Australia a medical emergency patient must be taken to the closest hospital - So I ended up with a very sick febrile-neutropenic child in an open emergency ward. The nurses or doctors didn't appear to have any knowledge of the infusion port he had, and I had to scream at them to stop their attempt to access the port with a regular needle. There was 6-8 people crowded around my son talking about his "case" as if we weren't even in the room. A nurse attempting to take blood wasn't even looking as she drew the blood, I saw a bruise forming before my eyes and she wasn't getting any blood, again I had to yell to this woman to stop, and it took several attempts to be heard over all the chatter going on around us.... it was a nightmare situation where I was frightened for my son. Believe it or not this happened twice!
To avoid this situation I called the South Australian Ambulance Association to organize for Zac to be flagged on their data base for a direct run to the hospital where he was being treated.
If there is a hospital between you and where your child receives treatment - I highly recommend looking into the procedural policies for your ambulance service, the above could have been a fatally time consuming stop. Please take into allowance the distance between your home and the hospitals, perhaps consult with your Oncologist or Social Worker.
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One thing we had to adapt to was the issue of food. After a while instead of trying to convince Killian that he should eat anything healthy, we found out we could simply offer him ANYTHING.
Killian would make the choices. Many days the only regular calories he consumed were from Chic-fil-a Chicken nuggets, Cheeze-Its and the occasional yogurt..... but that was okay. Anything he could keep down was fine! Although he went from 75 pounds to 49 before it was over, it was okay - he managed to survive!
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As time went on with Zac's Treatment I found myself spending more and more time on the phone with worried family members and friends. Wanting to know how things were going, this was fine while things were good. However as the prognosis and Zac's health both deteriorated (and Zac was getting old enough to understand more) I had to rethink my strategy for keeping people updated.
I decided to send regular e-mails to everyone who had e-mail with a mention that they were more then welcome to call Zac and myself to say G'day - but I wouldn't talk medical on the phone with Zac present. My parents were nominated as "The PR people", friends and family were encouraged to call them if they had any questions regarding the cancer stuff. : My parents were always looking for some way they could assist us - and this was of a huge help.
I have just discovered a wonderful free service, where you can create a website for free! It's easy to use, and you don't need an understanding of computer codes, just follow the directions on the site... I've created one for you to look at Zac's Caringbridge Site. If you have a child with cancer I would highly recommend the service that
www.caringbridge.org has to offer. Their service includes space for photographs, and visitors may subscribe to the automatic journal updates - this will advise subscribers of updates to your site. They also offer a guestbook and much more....
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Return Home
Rhabdomyosarcoma
Survivors' Stories
Family Issues
Books for Kids
Saying Goodbye
Other Links
Poems
Thank you
Link to other home pages
Submit Your Tips