Home Sweet Home
Hi Everyone. We are all glad to be back home and I want to thank everyone who was praying for Eden to get through the MiBG Treatment fast and easy... It all went exactly as planned and by Thursday her levels were down to a safe enough level for her to leave the hospital. (needed to be 7 to leave and they were 4.2) and let me tell you when they are done they ARE DONE.. They dragged us down for the scan and kicked us out.. So we were no longer allowed to stay at the hospital and in fact we were told that once she left the room we needed to walk directly out of the hospital ....Do not pass go do not collect 200.00. This is because although her levels are safe for her to be in public it is still not healthy for sick children to be exposed to Radiation that Eden is still giving off. We were also not allowed to stay at the Ronald McDonald house because there are sick children there, so they helped us get a room at a hotel for the night until Uncle Jack could come pick us up today. We showed up at Atlantic Aviation this morning around 9AM to wait for him to get in and the girls there were SO SO wonderful to Eden. They grabbed her up before we even unloaded the Taxi and were off spoiling her. THANK YOU LADIES... That really made her day! We had to wait 45 min on the runway to get going because they were so busy but we could never be upset or complain as we are so so lucky to have the amazing Capt. Jack running us back and forth in his private plane. The flight was wonderful as always and it was such a beautiful day for flying.
CeCe was having a Company swim party so we stopped for much needed play time and just got in the door... Eden has to take one of the liquid meds every 6 hours and the other every 4 hours for a few more days and then one once a day for 5 weeks to protect her thyroid from the Radiation and we must do labs twice a week and of course transfusions whenever necessary and we wait for 6 weeks for them to rescan her to see if the treatment helped. Please pray that it does!! We were told that Eden would be having a scan before she left the hospital and that we may see more disease on this scan because of the large amount of MiBG in her body from the treatment. They gave us a call and said that of course we see the spot on her shoulder and the spot in her belly and a spot we haven't been able to see before at the base of her skull. All of these spots have been there but we just haven't been able to see them.. so we are trying hard not to freak out.. I will talk with Dr. Nick on Monday and try to understand this better to explain it better.
For now she is feeling great and loving life and thank you all for your love and support!