Septmeber 26, 2009 - Saturday
We had a very long day at the clinic yesterday. All days are long at the clinic -we arrive at the clinic close to 7:00 am and usually do not get out until 6:00-6:30 pm. We are all just exhausted from the process. Upon arriving at the clinic, we first have to access his port (which is involves a needle and is not fun), draw blood from the port, meet with clinic doctor, then receive chemo or have procedures performed in PACU depending on the day. Yesterday was a PACU day, which is similar to an outpatient OR located a few floors below the clinic. PACU days are stressful and the wait times are extremely long. It is very frustrating to wait so long with your child who is on medication that makes it physically painful to fast. Anyways, Oliver received a lumbar puncture with chemo (spinal tap) and bone marrow aspiration at around 1:30 pm. He woke up much faster than he usually does, and was happy to finally be able to eat around 2:00 pm. One of the side effects of the steroids are strange cravings - Oliver loves to take a marshmallow, cut it in half, place grated cheddar cheese in the middle and make a marshmallow sandwich. It is his own little creation and he frequently tries to get Larry and I to eat it with him, which we reluctantly give in to from time to time. Anyways, that was the first thing he asked for when he woke up. We then went back up to the clinic where Oliver received a blood transfusion. His hemoglobin was low but the rest of his counts looked good. We have to go back to clinic on Tuesday for more blood-work to make sure the counts stay ok, and then back again on Friday for lumbar puncture. We do have cause for celebration this weekend - today is the last day Oliver has to take steroids! It will take a couple of weeks for some of the side effects to fade away (puffy face, extended belly, high blood pressure, mood swings, to name just a few), but we are ecstatic to be rid of those. We also hope to avoid PACU going forward and have the lumbar punctures performed at the clinic. We met a very nice family at the clinic yesterday who shared some tips with us for reducing PACU wait time and giving medication. It was nice to meet a family who can relate to what we are going through. There were also some professional athletes and astronauts at the clinic yesterday. We missed the astronauts because of our wait time in PACU, but did meet the athletes and Oliver received a nice t-shirt that says “bald is beautiful”. We hope everyone enjoys their weekend – fall is here, one of our favorite times of year.
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I started this blog as a way to keep everyone updated on Oliver's status and am so thankful for the outpouring from our friends, family and beyond. Thank you all for the support!