ADDITIONAL INFORMATION AND EXPLANATIONS
Intravenous treatments pre and post "Wiggly"
Intravenous treatments were given into the back of Jacks hand using a small butterfly/needle, with "Magic Cream" applied about an 45 minutes earlier to "numb" the area and reduce any pain.
Lumbar Punctures
For Lumbar Punctures and Bone Marrow Biopsies Jack had to be nil by mouth from 07.30 am and was allowed clear fluids only until 10.30 am. We would then attend Day Beds around 11.30 where he would be weighed, have his observations taken, name band applied and be seen by the Doctor and the Anaesthetist prior to Mum signing the consent forms. He would then be given a general anaesthetic somewhere between 2pm and 4pm. Once out of recovery Jack was allowed to eat and drink and could go home if all observations were normal and he had been to the toilet.
Weekly Counts, (the weekly blood tests whose results ruled our life)!!!
Jack has weekly blood tests to check his Hb, white cell count, platelets and Neutrophils. All are important, but the one that affects us most is the Neutrophils. If they fall to below 1.0 this is called Neutropenia and means Jack is very prone to infection. If Jack develops a high temperature we have to follow a very specific protocol of phoning the ward to inform them and getting Jack to hospital within an hour for antibiotics to be started very quickly as infection when neutropenic is very serious. Neutrophils are also responsible for causing the redness, swelling, pus formation associated with infections but if neutropenic this is less likely to happen and makes it much more difficult to determine where any infection is located. We very quickly learnt to live with a packed suitcase in our bedroom so that if Jack develops a high temperature we do not have to run around looking for stuff, we just get in the car and go.
The Wiggly
The Wiggly allows the doctors and nurses to give drugs and draw off blood without having to stick needles into Jack each time. The Clic Nurses who visited us at home every week to take Jack's blood would also "flush" his wiggly with sterile saline or salt water to keep it clean and help prevent it blocking, and would also change the "nose" or bung on the end of the wiggly and the dressing around the exit site too.
Mum and Dad learnt how to flush Jack's Wiggly and change the dressing themselves which made life a lot easier.
All "Intravenous" drugs, anaesthetic drugs and all blood tests could now be given/taken using Jack's Wiggly, though we did have some days when it would "block" and would need a lot of persuading to work, from waving his arms in the are, rocking from side to side and including tipping Jack upside down on one occasion as we had tried everything else - it worked !!!!!
Maintenance
This is the treatment regime that Jack followed for the remainder of his 3 years of treatment. The dose of his chemotherapy tablets changed slightly as his weight increased and whether he received a full dose/half dose or no dose depended on his neutrophil count for that week. Jack's dose was worked on an alternate day cycle eg. 50mg one day, 60 mg the next. When his weight increased to have the same dose every day, his neutrophil count kept dropping and he would have to stop treatment altogether until it came back up. Keeping to the alternate day dose seemed to balance better and although he still became neutropenic from time to time, it was less frequent and required a half dose more often than having to stop altogether.
We devised a drug chart on a dry wipe board where we recorded all of Jack's drugs as well as mouthwashes and wiggly flushes so that we knew whether or not he had had what he was supposed to. This worked really well and it didn't matter which one of us gave his drugs, as we would cross it off on the board. (see My pictures - friends).
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