June 12, 2006

Please watch Discovery Health Channel at 9 pm tonight to see a documentary on NEMO - Jack Hagelin will be featured. (This will also rerun on Sunday, June 18th at 5:00 pm) Its called Mystery Diagnosis. I plan to watch it myself and I'm not sure what info will be on it but thought it might help us all to understand this disease. We made it home from the hospital on saturday afternoon. Simon is doing pretty good with the G-tube and eating a little bit. Always hoping for improvement there. Good News for the Hagelin family, Jack is home with 100% donor cells. Way to go team at CHOP. I pray that Simon will have the same success if we have to go through this again. WE are in a 3 week waiting period while he recovers from surgery and we await some blood results. In that time we have to have a golden 4th birthday party and try to enjoy our family. Thank you all for your prayers and please continue to keep us in them. We still hope for the miracle of not having to redo the transplant so pray for marrianas current cells in simon to gain strength. God Bless Tracy & Dave

39 June 08, 2006 at 09:14 PM EDT
WEll today has brought us the news we were praying so hard not to hear. The counts are back and they are not where we need them to be so stemcell is proposing we redo the transplant. Not get a boost but actually redo it from day -14 - +100. Dave and I are flattened. We don't even know what to do anymore. They are proposing a different more intense chemotherapy for Simon and I'm not sure I"m on board with it yet. We are doing some research into the drugs and side affects and such and not liking what we are finding. So alot more discussion needs to take place. We are trying to think "we have to just get through this and it will all work out and simon will be ok" but I have to tell you its taking its toll and I don't know what else to do. Simon had surgery today to have a G-tube placed in his stomach and is pretty miserable and sleeping right now. I'm sure I'll be up all night with him tonight. He has not been able to eat since midnight and cannot have anything until tomorrow morning. He will have a tube in his stomach for 8 weeks and then a button is placed for easier use and looks better. So I have to say I don't know why the prayers are not being answered and our knocks on the doors are not being opened but we will continue to ask for a miracle and hope you will help us and do the same. love tracy and david

38 June 07, 2006 at 12:45 PM EDT
Well we have had alot of testing done in the last 2 days and so far everything is coming back clear and no signs of blockage. Which is really good. Simon had another spinal tap last night and is on diamox now. We hope this does the trick. We have no real answers beside he might be sensitive to steroids so we hope and pray it doesn't come back. His head is still bulging on top so I'm not sure why that is happening and they say it may take a day or two to go down. In the meantime he had an upper gi scan today and we are working on getting his G-tube in this visit so we don't have to go back. The girls and I were able to have breakfast out this morning with Grandpa and Grandma Terri and we are heading to the hospital now so the girls can see Simon as they miss him alot. We posted some new photos so check them out. They are when Simon had an appetite and it is good to see him wanting to eat, gives me hope for that to happen again. The photo of all of us is my newest niece, Olivia, and its a wonderful photo of her. Please continue to pray for better vntrs and that we don't have to go through this all again. Thank you and God Bless. Tracy and David

37 June 06, 2006 at 10:25 AM EDT