posted on CarePages, April 16, 2011

Stephen and Patrick are on a flight home as I type this update, a little later than the scheduled arrival time. Patrick’s radiation level was 6.5 this morning, barely below the release limit of 7. We were concerned that he would be inpatient a little longer this time because his radiation level immediately after infusion was 50 as opposed to the mid-30s level the last 2 treatments. I was very relieved when I heard the news this morning. After a platelet transfusion and a quick scan, the boys were released for home.

Patrick and I arrived in Philadelphia Wednesday after lunch to meet with Dr. Maris and be admitted at CHOP. Patrick received blood and fluids in preparation for his foley catheter placement on Thursday morning. Patrick received his radioactive iodine MIBG infusion in the early afternoon. Everything was pretty smooth until Patrick’s foley stopped working and his nausea broke through the zofran he was getting around the clock. I won’t go into the messy details, but suffice to say that dealing with non-stop radioactive throw-up and equally radioactive urine while trying to stay behind a lead shield and not touch anything was a challenge. Luckily, the only casualties were some clothing and my shoes, which were all too “hot” to leave the room. We kept radiation safety busy this time!

Patrick and I were both very excited to see Stephen on Friday. I was anxious to get home to see the girls, and Patrick was ready for new entertainment. He always amazes me when he is in the hospital. He only complained a few times despite the faulty foley, the extreme vomiting, the isolation, not being able to touch anything or hang out with us… It is such a blessing but it also makes me sad because it is a reflection of how much time he has spent in the hospital the last 5 years.

When he arrives homes, Patrick will have to keep some distance from the girls for a few days, but other than that, life will be relatively normal for him. We will return to Philly April 25 for his stem cell rescue. Hopefully that will limit the amount of time that he spends blood and platelet transfusion dependent. He hasn’t been able to go more than a week without a transfusion since February, and that will likely be the case again until those stem cells engraft. We then must wait 8 weeks after the stem cell rescue before we can start our next treatment which will most likely be antibody therapy at CHOP.

My boys should be here soon! Another treatment is under our belt, and we will be enjoying a normal Sunday tomorrow. Life is good.

Press On!