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"I have cancer, it doesn't have me" KELLIE ATKINSON A beautiful, intelligent, brave and courageous 15 year old girl
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7TH DECEMBER 2004 to 18TH FEBRUARY 2005 18th February Friday – day +276 Kellie is a new girl. No sorry she is not a new girl she is the old girl I used to have. The only difference is that she is Kellie with the little Swiss boy “Gunter” growing inside. Life seems like it is back to normal. Kellie’s last trip to the hospital was on Tuesday and her blood results were excellent. Her magnesium level was above 7 and we believe this is normal or close to normal, so no more magnesium tablets. Dr Waters dropped them completely rather than weaning them off because Kellie confessed that she hadn’t been taking the full dose of 12 tablets per day (this was news to me). She had only been taking about 4 –6. But her levels didn’t decrease they rose so she was very lucky. Her tacrolimus has been dropped to one per day until next Tuesday and then stop. Yahoo!! No more immunosuppressants. Her Megace eating pills have also decreased. Her weight is now 60kgs. Thank goodness their effect has dropped off I thought at the rate she was eating she would look more like Graham than Kellie. She feels healthy and strong. The other day we were reminded that her digestive system is still delicate. She ate something she shouldn’t have (like take-away noodles and strawberries and cream at St. Kilda festival) and ended up coming home from school early the next day with tummy cramps, a low-grade temperature, followed by severe diarrhoea. I thought here it all comes back again, but her system fought it and it only lasted for about 12 hours. She was fine the next day for her review with Dr Waters. Everyone at the hospital was amazed at how well and happy Kellie looked. She walked and talked so tall and proud. She looked so beautiful. Was this the same girl that only a few weeks back looked so tired, sick, pale, stick thin, shuffling her feet along with her head low? I too walked and talked and felt so proud of my gorgeous girl, with a smile from ear to ear. 2nd February Wednesday – day+260 Well it has been a while since I last wrote in this diary and things have improved incredibly. Kellie had her visit to Dr Waters on Friday 28th and had gained weight, in total just over 10kg since she started on the Megace. She is now 58kilo and still eating like a horse. Her energy is amazing and she has been back at school everyday since it started on Thursday 27th. (Only lost one period of the day for her hospital visit). We don’t have to go back to the doctors until the 15th February. Kellie is now being weaned off her immunosuppressant and will be on 2 tablets twice a day until Friday and then 1 tablet twice a day for 10 days. After this her other drugs will be either stopped or reduced (all except the hydrocortisone). At the moment Kellie is doing extremely well and I have an empty house during the day. This evening she is feeling very tired and I think this is because she is not used to being active all day. Kellie has taken up exercise and wakes me every morning at 6.30 to go on a walk around the block before school and then she is on the go at school until 3.30 followed by food and homework for a couple of hours. She has also been cooking dinner this week because I have been going to a gym class each night at 6 o’clock. All those hours in front of the TV watching the Lifestyle channel has certainly helped her culinary skills. Her netball club has just had its registration day and Kellie wants to register so she can play this year and she has also requested that I make an appointment for her to sit for her learners permit to drive. I can hardly believe this is the same girl that had absolutely no energy and was constantly feeling nauseous and easily threw up and slept on and off through the day only two weeks ago. I am so proud of you Kellie. What a great achievement. 18th January Tuesday - day+245 WOW! It's amazing what some drugs can do. Kellie has not stopped eating since she started on the Megace. She has craved noodles from our local noodle bar every day. She has been dreaming about Tim Tams and BBQ chicken. Strange combination. She has been eating cereal and toast for breakfast - more than one piece (this is not unusual for some but for a child that has never had much for breakfast it is extraordinary) and bread rolls and sandwiches for lunch, morning and afternoon tea of cake and biscuits and stir fried chicken and noodles in oyster sauce for dinner every second night and steak and vegies on the other nights. I cannot believe I have the same child. The more food she takes in the more energy she has. I know this is a well-known fact but to see the change in Kellie is amazing. Peeta got an offer from Swinburne University to study Business/Marketing and is very happy. (So are her parents.) 16th January Sunday – day+243 Kellie's hair is coming back with a vengeance. She is now going without her bandana but is costing me a fortune in jell. She always had straight hair before she went bald with a nice auburn tinge but it has grown back straight without a tinge of anything. It is just dull mousy in colour. Already she has put in a pink coloured hair moose. I know what you are saying - "photos would be great", I promise to add some soon. Kellie had lots of Christmas photos on her new digital camera but managed to delete them all before she downloaded them to the computer. 7th January Friday – day+234 Kellie’s visit to the specialist was all good news. Her weight was up one whole kilogram – 52.15. Next weeks visit we are aiming for an extra 2 kilos. It will be a few days before we have the results of the other tests. 6th January Thursday – day +233 Kellie was discharged on Monday afternoon. The sinus pain had gone away and her temperature was only 37.2. The previous night her vein with IV line in it decided it had had enough and would no longer accept any antibiotics, so they took it out and she started on oral Augmentin forte. Unfortunately, her stomach didn’t like the orals and she began throwing up first thing in the morning. The antibiotics had exacerbated the diarrhoea and now the vomiting. She managed to throw up again just before the doctor came in to say she could go home. He let her out because she had an appointment with Dr Waters scheduled for the next morning but if the temp rose again and the vomiting didn’t subside we needed to return immediately. The vomiting stopped but not the trots. Before we left the ward her weight was only 49 kg. At weigh in the next morning we both watched with anticipation, knowing that the outpatients scales are the ones she is always weighed on and we hoped that the ward scales weren’t weighing heavy. Big relief – 51kg. Still down but not as bad. Keith Waters now has Kellie on feeds most of the day and night (approx 20 hours) and has stopped the antis already. Kell is happy with this because she can’t stand the sight of herself looking so thin. Back to the hospital tomorrow for extra blood tests – thyroid function, glucose, CRP, random cortisol, creatinine, potassium, magnesium, and FBE. She is starting to look like a junky with such skinny arms and body and all the needle holes in her arm. Shame that hickman line had been removed a few months ago. All in all, this girl is amazing and marches on without one complaint. Not even any AnGel cream before her blood test.
31st December Friday – Day+227 Kellie’s colonoscopy and gastroscopy results showed no GVH and no infection in the gut lining. This is good. So the weight loss is mostly due to the diarrhoea but thankfully not Graft v Host. We hope Christmas was good for all of you. We had a fun Christmas with Sharon and Mellissa and their families. On Boxing Day we went to Phillip Island and enjoyed a couple of cold days in front of the fire (hard to believe it is summer, only 14 to 18 degrees) Monday night Kellie had a headache and sore tooth with a low-grade temperature (37.7). Early Tuesday morning up came the Nasal gastric tube, and up went the temperature and the pain increased in her face and tooth. All day we tried to keep the temp down but it still peaked at 39.9 so a phone call to RCH and at 10pm we were advised to go to the Phillip Island emergency department. The doctor there thought it was too dangerous just to put her on oral antibiotics and he felt she needed an x-ray and more specialist care due to her immunosuppression and sent us to RCH. We arrived at 12pm with a temp of 38.9 and Kell was seen by a very unconcerned registrar. After the bloods were tested, the emergency Doctors decided the blood count was good. The white cells were up which meant an infection but they thought oral antibiotics were good enough and sent us home at 3am with a temperature of 38.8 and no x-ray. They hadn’t consulted the oncology team and I told them before we left that I didn’t think that was right and that I would be calling Kellie’s specialist in the morning to make sure they were happy with the decision. Her temperature was down a little in the morning and it looked like she was improving and I started to think they were right. I still decided to call the oncology department. Well thank goodness I did. Kellie has now been in hospital since Wednesday afternoon with intravenous antibiotics. She has an infection in her sinuses. Apparently her blood test showed her white blood cell count quite elevated and her CRP level was high ((?) Not sure what that is but should be below 8 and Kellies reading was 175 on Wed. morning and then over 250 on Wed arvo)# This signalled to the Specialist that something quite sinister was brewing. Everything is now under control and the ENT specialists are considering draining her sinuses. I was told I should have insisted they call the oncology team while I was in emergency as this could have been very dangerous. I believe I shouldn’t have had to if the emerg doctors were doing their job properly. Now after my little whinge the New Years fireworks should look good from the hospital without the crowds on the ground. Our spirits are still high because Kellie is in the right place and in good hands at the moment and this is something that could have been a lot worse, so, HAPPY NEW YEAR EVERYONE and lets hope this is the only time Kellie is admitted to hospital for 2005. # Have been told CRP is some kind of marker
that they record that indicates a bacterial infection found in White blood
cells.(?) 20th December Monday – Day+218 Wow what a week. Sorry I haven’t updated for a while. On Tuesday last week Kellie and I visited the hospital for the usual check-up and for her to be admitted for the scheduled Gastroscopy and Colonoscopy to be performed on Wednesday morning. After weigh in Kellie had put on 300gms and we waited in anticipation to see if Dr Waters was going to allow Kellie to go on camp after the procedure the next day. Two weeks earlier I had booked a flight to Sydney to spend some time with my parents before Christmas (all before we knew about the endoscopy and only because Kellie was going to camp, which Dr Waters had approved earlier). Camp really depended on her gaining weight. He allowed her to go but not until the Thursday morning. The hospital is full to capacity at the moment and after spending sometime waiting for a bed it was decided that all preparation for the endoscopies could be done at home and Kellie just needed to present at day surgery by 10am on Wednesday. I flew to Sydney at 6.15am on Wednesday morning and Graham took the day off work to be with Kellie. She handled the procedure very well but when they put the nasal gastric tube back in it took a couple of goes and Kellie was not impressed. They got up at 4am on Thursday to drive to the Grampians for Kellie’s 4 days of CanTeen camp fun. They arrived in time for breakfast at 8am. CanTeen is such a great organization for Teens with cancer. Kellie had an absolute ball. Thanks CanTeen for your great efforts and organization. She has returned home tired but happy. She is very lucky to be able to attend camp only 7 months after her transplant but her blood counts are perfect, her skin is good, only her weight and the fatigue is a problem. Good work Kellie. I enjoyed my 4 days with mum and dad, although it was not relaxing it has energised me. I painted her dining room and closed-in veranda area and then re-carpeted her dining area ready for the Christmas festivities. Dad has Alzheimer’s disease and is unable to do what he used to do well. It was good to be able to help mum and dad and just be there for four days instead of only talking on the phone. We will be having Christmas in Melbourne this year with friends so won’t get to enjoy the freshly painted dining area. Only 5 days to Christmas and I haven’t done my shopping yet. It can be hard when I need to take Kellie with me and she only has enough energy for about an hour of shopping, so I think I will be taking advantage of the late night shopping all week and waiting for Graham to be at home sitting with Kell. I have never been so unorganised for Christmas before. It is now 9 in the morning and I have a very quiet house because the girls are still asleep. I think Kellie will sleep all day after her busy week. We don’t get the results of the endoscopies until tomorrow. So once again we wait with a positive attitude that all will be OK. 7th December Wednesday – Day +205
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