Gavin had a follow up apt today and we're on the schedule for round 2 of chemo next week. We're going to try it outpatient (5 days) and pray he tolerates it because he loves being able to go home and be with his brother. Genetic biopsy is not resulted yet but should be soon. He's enjoying each day and feeling good. Thanks for all of the continued love, support and prayers.

Gavin got a blood and platelet transfusion today at his clinic visit. He's feeling good, playing hard and enjoying life. Praying we are able to enjoy the weekend and go on some "adventures" as Gavin calls it.

4/29/13

Gavin has had a comparatively good day. They stopped his pain pump today and started him on as needed doses every three hours... He's had it twice today!! :) He's officially off steroids and he's tolerating feeds at the maximum rate. The swelling in his face is DRASTICALLY improved and he stood independently for several minutes today. Several people have asked what the next step is... The best way I can explain it is, they will now treat his Neuroblastoma as a chronic illness. It's not to say they can't get him feeling back to normal and hopefully in remission again. But this disease is aggressive and he will be on long term treatment and monitored very closely. I guess you could compare the management to that of AIDS. You cannot necessarily cure it, but it can be managed to have a good quality of life! What more can ANYBODY ask for?! So were happy to be at a place of HOPE and he's improving everyday! Feeling very blessed.

Gavin got to go on another adventure out of his room today! He loved getting out and about. He is more alert and staying awake much of the day. They are still tapering steroids but he is MUCH IMPROVED (major behavioral outbreaks). He did some exercises for me and is very comfortable, snuggling and watching movies :)

Gavin had a drastically... Different day today (not a bad thing). He had doctors orders to go outside and he LOVED IT!! We were allowed an hour out of his room to roam. We walked all over the place and he formerly met one of his biggest fans, supporters, and advocates, Heather Monk! He quickly found a new friend in her and treated her with a special surprise! They thankfully were able to decrease the steroids today. Poor little guy is struggling on steroids. He finished the round of chemo today but we'll be here a few more days to wean him off steroids, make sure he tolerates the feeds and get some much needed physical therapy. Thanks for the continued support! We're getting there, one day at a time! 

Gavin's biopsy was rescheduled until tomorrow. It was a fairly uneventful day for him. He ate some cookies this evening (YAY!!) I don't know the time for his biopsy yet but ill update with how he's doing afterwards.

After a comprehensive look at all of Gavin's scans and tests, the doctors have found that the Neuroblastoma has spread to his bone and bone marrow. It was not a significant amount in his bone marrow though. Since there wasn't a lot there, further genetic testing couldn't be done by using his marrow... Therefor, they will be scheduling him for a biopsy of the jaw tumor to test (why? Because its the safest location to test).  It's about 15% chance that his disease is genetically linked, but if that is the case, there are even further treatment options. The treatment plan is still being developed and ill update as I know. The support from our community, friends and family has been AMAZING! It warms my heart and strengthens me to see my baby as so many profile pics. Thank you all and keep up the prayers!

4/23/13