• Antibody Study Progress

    May 27th, 2011MurtLiam

    We are packed and ready to leave the hospital as soon as the last  infusion is over. Liam is snoozing and I have had far too much coffee to nap, so Ill give you an update. We have just completed the 4th of 5 cycles. I am shining with pride!!! I must say that every cycle has been different. Different reactions, energy levels, discomfort , appetite… It seems like whatever we prepare from the last admission changes  

        The one thing that  remains the same is Liam’s incredible personality. He has started making friends in the playroom and chats with anyone who will listen. I will say that he still has shy days, but it is so wonderful Liam can be so ease in the hospital. He has a bit of a routine around here. Sleeps late, plays hard all day in and out of the play room, naps from 6-8pm and then parties in the halls till after midnight. The late night walks are fun, scavenging for lollipops and just a change of scenery. I think he likes the night walks because it is quieter without so many people roaming around.

       We over pack every time. We bring food, blankets, pillows, toys, toys and more toys.  This week I planned for Liam to sleep all day everyday and the absolute opposite happened. We had to dig deep for rainy day kind of games.  It was awesome to have him up about and eating better than ever before(In hospital) The Antibodies have a significant allergic reaction risk along with a load of other complications. Thankfully we have been blessed and I feel that I might have jinxed us this week by talking with a doctor about Liam’s great progress. She just finished saying that none of her other Pt’s had made it so far without having to stop related to severe allergic reaction, when Liam’s lips began to swell. We have had hives before but never serious mouthswelling. We are pioneers in a way withthis study, it hasn’t been administered at Children’s for years and  the course wasn’t completed related to severe reaction. The lip swelling was the furthest the reaction went. Liam never had difficulty breathing.  We were allowed to continue the administration at 5o% infusion rate which turned the infusion from a 10 hr infusion to 20 hrs:) Not such a big deal in the long run. Liam’s pain was always one of my biggest fears and he tolerates everything with fleeting episodes of discomfort,managed well with pain meds.  In the past we have gotten home and Liam sleeps and sleeps for a week, only time will tell if this time will be similar. We are so lucky, unbelievably lucky to be given the opportunity and any drip of the antibody is better than none at all. Our final planned admission is on Father’s day for one week. We will not be offically finished but the rest should  be managed outpatient in the Oncology Clinic or Day Hospital.  I am focusing on spending some well deserved time to resting, recouping and restarting life as soon as it’s over.

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