Second induction phase - Week in Review

Wow - it's been over a week since I've made an entry in my journal.  I'm a bit disappointed that I've reduced or slowed down my effort to journal but I don't think I can continue to journal as regularly as I did in the beginning.  I think my new goal is to try and write at least one journal entry a week and if I've managed to do more than one a week - then that's good - else no stressing about it.  My only 'stress' is that I want to make sure I continue to track my thoughts as events occur and I know when I let too many days pass - I tend to not remember things to accurately.

Jonathan continues to do very well in this second round of his chemotherapy cycle.  Last week Sunday saw the start of the increased dosage of his C-GSF shots (injections).  His increased dosage was three times the regular amount and I remember us thinking how are we going to give him three separate injections - when it is already difficult to give him one injection.  Luckily we were able to get a needle that could hold the entire amount of the increased dosage so Jonathan just got one 'stick' or one shot.  The only unfortunate thing was that we had to inject the medicine slowly to give his fatty tissue time to absorb it since injecting it too fast is a bit more painful - especially with the increased amount of medicine.

The increased dosage was to push his production of stem cells (and white blood cells) to the point where the stem cells would leave his bone marrow and enter in the (peripheral) blood stream.  This means that his blood could then be filtered to 'extract' the stem cells which would then be stored / freeze until all his chemotherapy cycles are completed for re-insertion or stem cell transplant back into his body.  Jonathan's stem cell collection was scheduled for three days - Wednesday, Thursday and Friday and the goal was to collect 15 million CD-34 or stem cells.  10 million would be sent to the purging arm as the 'primary' batch that will be used during the stem cell transplant and the 'extra' 5 million is used as two back-ups in case the 'primary' batch failed.  The purging arm needed this high number of stem cells because during the purging process a large quantity of the stem cells are lost / destroyed and the goal is to have at least 1 million stem cells remaining.

On the first day of Jonathan's stem cell collection - he had to be hooked up to an Apheresis machine which would draw blood from one of this catheter lines, extract the stem (CD-34) cells and return the blood via his second catheter line.  Since Jonathan's total blood volume is small - at least compared to an adult - the Apheresis machine is primed or loaded with blood from the blood bank - similar to if Jonathan was getting a blood transfusion.  If the Apheresis machine was not primed first - then the amount of blood that would have been extracted from his body before it was returned would have been too great and dangerous for him.  As we were getting ready to start hooking Jonathan to the Apheresis machine - we had to give him Tylenol as a preventative medicine - a standard procedure during blood transfusion.  In previous situations where Jonathan has had to receive blood transfusion - he only got Benadryl and that was given intravenously - via his catheter.  The problem on this particular day was that the Tylenol had to be given orally and taking oral medicines is a big issue for Jonathan.  Gabby and I had to hold him down to force it down his throat and he was so upset about having to take oral medicine that he continued to fight and throw his tantrum for the next 60 to 90 minutes.  It got so bad that he pulled his catheter lines to the point where it started to hurt him and we were forced to change his bio patch in the middle of the Apheresis procedure hoping that it will  relieve some of the pain.  I must say - one of the things we have learnt well from the nurses and other medical staff - is the art of forcing a child to take liquids.  It's not a nice thing to do - but it is either forcing them to take it - or having the doctors put a tube down his mouth - which we are trying to avoid.

The collection on the first day took longer than we expected.  Instead of the usual three to four hours - it took closer to six.  This was due to Jonathan's catheters having smaller openings so the rate at which the blood could have been extracted was considerably slower than they expected.  I can tell you - by the time we left the hospital around 6:30 pm - we were so tired - it was unbelievable.  Added to our stress was a report from one of the nurses that I was rude to them during a meeting we had the previous Friday.  Our social worker came to chat with us and listen to our version of the events.  It was unfortunate that the nurse thought that I was rude - when I clearly was not - but all in all the entire situation seems to be resolved.  I also suspect that the other issue we have been having continually, i.e. the poor levels of communications have also been resolved as well and we see the future looking a bit brighter in terms of our interaction with the team.  I don't necessarily mean that everything will be smooth sailing - but we understand the processes now and know how to 'work the system' to avoid getting unnecessarily frustrated.

So by the time we reached home - between 7:30 pm and 8 pm - I was totally exhausted - mentally and physically.  We got a call around 9:30 pm from one of the Apheresis nurses.  They just got the results on the number of stem (CD-34) cells collected and it is 21.6 million!  Wow!  Could you believe it - we got 21.6 million cells in one go, in one day!  It was incredible!  It meant that Jonathan didn't have to go back on the other two days.  This was some really good news!  The only result we are waiting for is to find out whether the stem cells are tumor free.  Unfortunately this test takes a couple of weeks but if his collection is tumor free then we don't have to do another stem cell collection for the rest of his protocol (treatment).

The good news about his stem cell collection also meant that we had an extra day that we would be able to do some fun stuff.  On Thursday evening Gabby and I took the kids for a drive to Fresno.  My brother was in town for a couple days and wanted to spend Friday with us before flying back to Illinois on Saturday morning.  We thought the drive would have been a good fun activity - especially since the kids have been looking forward to seeing their Uncle for the longest while.  The drive was good - with the kids sleeping for about half of the way - which was a good thing because if we were home they would not have taken a sleep - but the drive turned out being longer than I had hoped.

On Saturday we went to an Easter egg hunt that the Gabby's mom group had planned and around lunch time we left to head up to San Francisco Zoo.  On Sunday we went by our Uncle and Aunt in Hollister and spent the day.  It was loads of fun because the kids love playing with the dog.  On Monday we went to the beach in Santa Cruz - mainly because Gabby has been wanting to fly her kites for the longest while.  All in all - the weekend was good and BOTH kids had a load of fun.

The rest of the week involved Jonathan having a lot of tests so that the medical team could re-evaluate his tumor (cancer) and verify how well it is responding to the chemotherapy treatment.  On Tuesday Jonathan had an echocardiagram and a bone marrow aspirate.  The echocardiagram is similar to an ultrasound - but involves examining the heart.  My main concern was the bone marrow biopsy and aspirate.  The biopsy involved taking a needle and inserting it into his back (not his spine but I believe by the region of his hip bone) to take a small amount of Jonathan's bone and drawing some bone marrow to test for any tumor cells.  There are two samples that are taken, i.e. two times the needle is inserted into his back.  Unfortunately the bone marrow biopsy - along with other tests such as CT scan and bone scan are done fairly regularly, i.e. once a month because no one test is conclusive enough to paint the complete picture.  I must say that Jonathan's recover from the bone marrow aspirate was excellent - with no apparent pain to the sites where the needles went.  As soon as he was home - both Arielle and Jonathan were running around in the porch - playing and having fun.

As I end today's journal entry I find myself wondering if God's hand is really involved?  Jonathan's reaction during the second induction cycle has been really remarkable and I think the doctors and nurses are surprised that he is doing so well.  Jonathan went for an ultrasound today and from what Gabby has told me - she believes that the tumor has shrunk quite a lot - but the CT scan tomorrow (Thursday) will let us know for sure.  I find myself thinking back to a phrase from a nun from Jonathan's school - the entire Saint Lawrence Elementary and Middle School are all praying for him - their prayers are knocking down on heaven's door asking for a full recovery.  I know other people are praying for Jonathan - which means even more prayers are knocking down on heaven's door.

I believe - as I've made in a journal entry after his first cycle that Jonathan would do well - but how do I tell that this is the hand of God or not?  Should I even care to tell or should I just say thank you - regardless.  This is definitely something to discuss with my spiritual director tomorrow but we are not out of the woods yet.  The only thing I know is that Jonathan has been having a great couple of weeks - which is beyond our (initial) widest expectation that such a thing could happen.