03 April, 2011

A little yard work

Robert was feeling pretty good today, so we spent some time working and enjoying the sun before our stint in the big house. He helped me spread straw in the back yard over grass seed. Of course once the hose came out, I lost my helper quick.

Getting Ready

Tomorrow morning we head back to the hospital for a 3-4 day admission.  Of all the trips that we have made, this is the first time that the admission has been scheduled.  It's advantageous for planning purposes.  We can put more thought into what we are taking, have everything ready, arrange for someone to watch Ben and Allie etc.  The only disadvantage is that we know it is coming, and everyday has a discussion about the daily countdown.  The surprise trip has the silver lining of the blissful ignorance that you have a few hours before.  Nonetheless, the emergency trip is a stress inducing logistical nightmare.  Given the choice, I'll take the planned and scheduled trip every time.  Of course we do have the one caveat of counts.  It is possible that we will make all arrangements, load up the van and head to Atlanta only to be turned away due to low counts.  Nothing is 100%.  We have four of these admissions, and if all goes according to plan they will occur every other week.  Each one however, is count dependant.  We could be delayed on none, or each and every one.

The reason that Robert is being admitted, is that he will be receiving a very high dose of a Chemotherapy drug called Methotrexate.  He has had it before in small increments, injected into his spine every time he has a spinal tap.  His initial plan called for this round of IV Methotrexate to be administered in a frequent clinic setting, with ever increasing dosage.  However since being switched to the high risk protocol, we were recommended this other option.  The new standard of care is to administer the MTX in high dosage, 4 times.  The primary risk is potential damage to the kidneys.  So while admitted, they will monitor his kidney function and toxicity levels, releasing us when everything is back to "normal".  The second issue is severe mouth sores.  It was explained to us that Robert will likely develop them and they may cause him quite a bit of discomfort and difficulty.  He may have to be on pain medication, and swish a topical anisthetic in his mouth to help him cope with the pain.  Maybe he will be spared them.  But I have to imagine that if the staff took the time to tell us about them, that they are likely to be a factor.  If his counts are high enough to procede, he will start the day with a spinal tap and a bone marrow aspirate in clinic.  Then he will begin his chemo and move to a room in our home away from home on the Aflac Pediatric Cancer Floor.