Preparing for Radiation Therapy

Jonathan is home!  What a small but still significant statement!  After spending over two months in the hospital - we are finally at home as a family.  On Saturday Gabby checked out of the Ronald McDonald and came home around 5 pm.  Earlier in the day I went up to Palo Alto to help Gabby.  I took Jonathan to the day hospital for his 9 am appointment while Gabby finished packing the stuff in the car and checking out of the Ronald McDonald house.  As usual - Jonathan didn't want me to take him - he wanted his mommy to take him - but I eventually got him to calm down and allow me to take him to his appointments.  He was getting his second to last treatment for his fungal infection and was also getting a blood transfusion.

The interesting thing that struck me over the weekend was that it was amazing how things settled down so quickly with the kids.  Jonathan and Arielle just played, and played and played.  On Saturday afternoon - Gabby went out with her mom so I had the kids at home - and they were laughing and playing together so nicely - it was totally amazing!  I know Arielle enjoyed it immensely.  When it was time for them to go to bed - I forgot what it was like to actually have to put the kids to bed and to continual remind them that it was time to sleep (because they were still 'wired' from playing).

Jonathan's appetite has not returned to any great degree, so he is still on his machines to get nutrition.  He has a pump that is used to deliver his liquid food - Pedisure - via his NG tube (the tube that goes through his nose to this stomach).  He gets between two to three feeding sessions during the day - which is really 180 ml of Pedisure delivered over the period of an hour.  These two to three sessions are representative of his breakfast, lunch and dinner.  He also has a longer feeding session - which is getting Pedisure over a 12 hour period at the rate of 80 ml per hour.  This normally starts just before he goes to bed and goes continual during the night until he wakes up the next morning.  One of the main reasons for making sure he gets nutrition is that his body needs about 150 % of the daily recommended (calories, etc...) since there is a lot of healing going on.

Other than his Pedisure - he also gets IV fluid during the night.  So he has another pump that gets hooked up to his catheter and the IV fluid is to make sure he gets enough hydration because he is not really drinking anything during the day.  The cool thing is that both pumps are in (separate) back-packs so it allows Jonathan to stay mobile since it's easy to take around.  If he needs both pumps then Jonathan wears one (the pump for his Pedisure) and Gabby wears the other (for his hydration).

Switching to a different topic - I've decided to take the plunge!  I've decided to take paid family leave (PFL) by working four days a week instead of five.  It's going to start in the middle of November and continue for about twelve weeks, i.e. until the end of January.  I'm hoping to use this time to spend more time with the kids.  Gabby was telling me yesterday that Jonathan was looking forward to seeing me yesterday - but I came in rather late so it didn't quite work out the way I / we expected.

Next week Wednesday is the start of Jonathan's radiation therapy.  On that day we are having a mock up and simulation exercise and Thursday marks day 1 of 12 for the actual radiation.  So, by the middle of November, the radiation therapy should be completed and just in time for Thanksgiving : ).  Jonathan also has a biopsy on Monday which would be the 2nd test being done for his re-evaluation of his cancer.  He would still have two more tests - an MIBG and bone scan - and the results from all will let us know if Jonathan still has tumor cells or not.  I'm hoping for good news - so we can enjoy Christmas and prepare for his Make a Wish trip in January / February - but we'll see what the future has in store for us.