WEDNESDAY DEC 4 cont)….
Tim’s blood counts continue to drop (this is good) and are 0.2 now, down from 14.8 yesterday. ATG was done without incident then fludarabine and then ara-c. 4 units of platelets went up, and tonight final dose of ATG and then Albumin due to protein loss. Unfortunately Tim’s NG tube got blocked and many attempts were tried to unblock it using bicarb of soda. It didn’t work so they tried good old coke cola but that didn’t even work. (Not sure why anyone would drink it if it is so strong it could unblock a feeding tube!) So the NG tube had to be removed and replaced—which is an unpleasant procedure.Family arrived with umpteen suitcases. They have a motel behind the RCH or about 3 minute walk away. Kids had a good trip but the younger ones are pretty tired and ratty which caused a few sibling fights at the hospital. Despite that it was good to see each other again and Tim looks really well. There is even talk of a couple of days out for him over the weekend—but doctors expect him to get really sick next week.
Again Matt has been a great support. One of the nurses praised his efforts over the past 5 days and admired his care for his brother and help to his mother, and maturity for a 13 year old under such stressful and worrying family matters. We will give him the day off tomorrow and allow Jess and Sarah to spend some quality time with Tim.
Philip would like to publicly recognise the support of his employer (Applied Chemicals) and friends at work who have been on this journey for over 15 months. It’s a great company to work for.
Tim is having his Lumbar Puncture tomorrow so needs to fast from 5.00am. Anxious for the results as it will show if he has cancer cells in his CNS (spine and brain).
THURSDAY Dec 5...day 6
7.30am Tim awoke with a spiked temp of 39.3. Blood cultures taken. He has a slight cough today that is becoming more productive. Due for LP today so is currently fasting. He will start GCSF today to stimulate the bone marrow to kick start it into producing white blood cells—hopefully good ones and not blast cells.8:15am temp 39.9. Panadol given. Tim really thirsty, he has a dry mouth,allowed to suck on some ice. Dr. Michaela arrived - chest clear, no rash,nothing obvious. Ordered chest xray, samples of urine, faeces and nasal discharge and prescribed triple antibiotics (broad spectrum). LP still going ahead—another 4 units of platelets prior to LP. When febrile (Hi Temp) neutropenic (No Neutrophils) you tend to burn up / use more platelets hence the reasoning behind the decision for a platelet transfusion. This will reduce the risk of bleeding from the LP site. 9:05am temp 39.4—panadol taking effect.
LP went well and Tim got through it like a trooper. Kent is happy with his progress to date, but it is only one day at a time. Off to Xray and then back to bed. Matt has decided to stay in hospital (not motel) and has not left Tim’s side. He continues to be very supportive of him.
Met with Barbara from the Qld Leukaemia Foundation. They have worked very hard to find us a house (as have so many other wonderful people) Philip, Jess & Sarah went out to have a look and were very impressed. It’s a 3 bedroom fully furnished house for 6—and the foundation is getting it set up for another 2 people. We are indebted to their generous support as we have the house for up to 6 months at this stage without any cost. It got’s the lot such as fridge and washing machine , TV, VCR, etc. They have arranged with the Vic foundation to freight the Tarago up from Melb and this will happen early next week. Again we can’t believe the help we have received.
Whilst all the “non-medical” things are falling into place we still have a very long way to go with Tim.
We found the Rainbow room today at the RCH which has dedicated volunteers, the kids can hang out there happily as they please. Lots of activities and fun things to do. Even got its own radio station and Sarah is in her element—she got on the hospital in-house TV show as the barrel girl. Andrew & Nicholas LOVE the electronic games.
Tim spiked another temp late in the day and was unwell for a few hours but then came good. It’s amazing how he can bounce back so quickly.
LP result tomorrow—nervous wait.
Family had an early night (8.30 bed) as everyone is a bit tired and grumpy.