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.

Day 54 - Upbeat

What a really nice weekend!  Last week Gabby and I decided that I would spend Friday night with Jonathan at the hospital - because she wanted to spend some time with her mom - who is flying back to Trinidad at the end of this week.  With Jonathan being in the hospital for so long - and my not able to contribute to spending time with him - Gabby didn't really get much of a chance to spend time with her mom.

It was during the week that I also got a brilliant idea - why not take my computer (desktop) to the hospital - so that way I can spend the entire weekend and at the same time get some personal stuff done!  So - that's what we did.  The original plan was for me to drop off the computer (and associated equipment) to the hospital on Friday morning and then head up into the office.  In the afternoon - I would come to the hospital and relieve Gabby - who would then spend the weekend at home and relieve me on Sunday night for me to go home.  Well - it mostly turned out that way except that I ended up taking Friday off.

I'll get back to the working thing in a moment - but my stay at the hospital was such a joy.  During my stay at Friday night - since I had the computer - the kids were on it playing games.  First when Arielle was there, and then afterwards Jonathan got a turn.  I think Jonathan was upset that Arielle was playing - because he wanted to play too - especially since it was the new Dora the Explorer game - but as upset as he was - he was still watching Arielle play : ).  The night was fairly enjoyable until it was time to go to bed.  Apparently Jonathan didn't want me to spend the night - but wanted Gabby to spend the night instead.  I was told that I can 'visit' but I cannot spend the night!  I know, I know, I deserved it.  For the last two months I have been away from the hospital and not spending time with Jonathan so I understood where he was coming from.  Incidentally, it was hearing his comments that have spurned me on to make some decisions about work - but I'll get back to that in a moment.

On Saturday morning - Jonathan was up early ~ 7 am.  I'm not sure if he woke up on his own or if the nursing staff woke him up - but since he was up - the nursing assistant decided to get Jonathan's stats -  his blood pressure, temperature, measuring his stomach, weight, etc.  I eventually went over by Jonathan's bed because he didn't look happy and was sitting up all the time - and I found out that he was still upset that Gabby didn't spend the night : (.  So I lay down next to him and he eventually lay down as well and we both fell asleep until around 11 am.  I think that it was after our morning nap when things got better and I didn't hear any more comments about wanting mommy to spend the night : ).

The remainder of the weekend was a blast - we had lots of fun - played games - including non-computer related games : ).  Jonathan is very good at making up his own games : ) especially with that great imagination of his.  I also learnt how to operate his pump to feed him.  So - another milestone we reached is that Jonathan doesn't have to get nutrition via his line (that runs to his veins) also called TPN but instead he can get nutrition via his NG tube that goes into his stomach.  We were really hoping that he would have been off the TPN for two reasons - it's more strain on his liver and his lines and ultimately his body is open to more infections.

With his feeding via his NG tube - he is getting Pedisure and he has to get the equivalent of 150 percent of his normal body needs - simply because his body has a massive amount of healing to do.  So - how it works is that he gets three major feedings during the day - to represent breakfast, lunch and dinner, and he gets a continuous feed during the night when he is sleeping.  I'm thinking of asking whether I can also get a juicer and give him things like carrots and other fruits and vegetables via his NG tube - but I'll see what the medical team advises.

So - today is the day that Jonathan gets released.  He will be heading over to the Ronald McDonald house.  Fortunately (for us) his stay will be short because day 60 is on Sunday at which time he can go home.  I've sent in a request to have him go home earlier - around Wednesday / Thursday - so I'll find out today what the doctors think.  I'm also taking tomorrow off (again) but this time it's because I have a cleaning crew coming in to our apartment to give it a through cleaning.  We need to make sure the place is really clean before Jonathan comes home - so besides the carpet getting a steam clean, I'll have the apartment get a good once over to remove the extra dust and such.

Hopefully by next week - we'll be together again under the same roof.  After his recovery - Jonathan's next procedure is radiation therapy.  They will be radiating his stomach area - the source of the primary site, and his leg - the remaining place of cancer prior to going in for his stem cell transplant.  His radiation therapy is supposed to last two weeks - with Jonathan getting radiated every day for about 10 to 12 days and will be done as an outpatient.  The doctors say that radiation therapy is a breeze - at least compared to his stem cell transplant - so hopefully that is true.  The major side effects are nausea, soreness at the site, and lack of appetite.  After radiation therapy then we'll have a another evaluation to determine whether cancer still remains.  We are both looking forward for this evaluation and I hope to God that all the results come back negative.  Of course, after the radiation therapy we still have lots more to do - but that's too far ahead ...

Day 49 - Mixed emotions

Juggling work, Jonathan's care and family responsibilities is definitely not easy.  A couple of weeks ago I was thinking of going on paid family leave - by taking about two days off a week - so only work three days a week - but changed my mind for a couple of reasons.  The two driving reasons were - a reduced scheduled means reduced income, and secondly it will affect my career path.  Now, it's a couple of weeks later and I'm getting back into the same problems I had a couple of weeks ago and I'm starting to revisiting whether I should really go on paid family leave.

What is driving me to make this decision is that I definitely need to spend some time with Jonathan - on average I spend about a couple of hours a week vs. my previous norm of spending the equivalent of at least three to four days.  Another reason is that I (really) need to give Gabby a break and spend time with the family as a whole unit - gone are the days where we will all be in the hospital.  My real wish is to not have to work for the next couple of months, or at least have the ability to work from home - but both are not options available to me.  The more I think about it, the more I need to take paid family leave, so I think my plan is to just do it.  I'll definitely investigate whether I can drop my schedule to three days a week.

Switching topics now - Jonathan is chugging along.  Since his second boast of stem cells - his counts have risen daily - very slowly for the first ten or so day and then a bit faster thereafter.  Monday (10th October) marked the first time his WBC went above 11 and his ANC was above 2000.  This means that he is not getting G-CSF everyday now - but instead of stopping it completely he is getting it every other day because he is fighting an infection.  On Monday, his labs came back with a positive culture for a fungal infection.  This is bad because in terms of the various types of infections he can get - viral, bacterial, or fungal - the fungal infection is the one you want to try and avoid.  With his positive culture - it also means his 'pick' line had to be removed - so now Jonathan has a peripheral line (inserted just above his hand) to get his IV fluids, medications and other liquids.  The hard thing is that the peripheral line is temporary and uses a small vein vs. the larger veins that the 'pick' line and hickman (his catheter) had access to - but he cannot go in for his surgery to have a new hickman inserted until his fungal infection has been treated.

On the positive front - Jonathan is walking again.  He has full use of his legs and even did a dance for me when I put on some party music in his room : ) last week.  He also started to swallow on his own on Monday night.  He started off by taking a couple sips of chocolate milk and also swallowing his own spit!  So no more getting the container for him to keep spitting into : ).  Last night he surprised me by asking for some of the (hospital) soup I was eating.  He drank most of the liquid - initially from a spoon and then via a straw - and he also ate a couple pieces of macaroni.

Yesterday also marked the first time in a long time that Jonathan and Arielle played like in the 'old' days.  I heard they had a lot of fun in his room and I know that Arielle enjoyed it immensely.  It was good to have her big brother back in form : ).

We are slowly coming up to day 60 - targeted around the 24th of October.  If Jonathan stays in the hospital until day 60 then it means when he is released that he gets to go home directly instead of going to the Ronald McDonald's House.  This is great news because we are ALL tired of being in an institution - I'm sure Gabby more than me - since I'm not the one spending all this time with Jonathan.  The interesting thing is that about two weeks ago I was having a discussion with one of the BMT Attendings and we were talking about - is it really necessary for us to spend time at the Ronald McDonald house if Jonathan gets released before the 60 days?

As a side bar note - the Ronald McDonald house is a housing facility that is next to the hospital - so although it has the McDonald name - it is not a fun / entertainment center - just a housing facility.  The general rule that was being followed is that BMT patients must live less than 20 minutes away (including rush hour traffic) or else they will have to stay in the Ronald McDonald house.  In our case we live about 30 minutes, with a little bit more if there is rush hour traffic - so we would have had to stay.

Although I agreed with the doctor that we needed to stay - I now fully understand why.  One of the frightening things is that when Jonathan gets an infection - because he is immuno-comprised - he doesn't show any symptoms.  This makes sense because his immune system isn't in a position to fight off anything - so his body doesn't reaction by showing you the external signs.  This is scary because one could never tell if he is truly sick or not and I know understand why during the first 60 days it is so crucial.

So - the beat marches one.  Jonathan has a CT scan schedule for this afternoon.  This scan is to get an idea as to how serious his fungal infection is, but the results can also be used to verify that he has no more tumor growth.  Of course he needs more than one test to indicate whether there is tumor growth - but one test out of four is better than none.