June 2006 Archives
Our sincere thanks to an old friend Moe, who ran in the Childrens Memorial Fathers Day 5k yesterday in Simons name to help CMH out with some donations. Thank you so much. Secondly, we hope you all had a nice fathers day. This photo is of Simon on Fathers Day. He looks FABULOUS as Dr. Kletzel would say. We think he is so beautiful. We enjoyed the weekend very much. We got to feel normal going to my sisters for Kyles 11th birthday and then to Daves dads for Fathers Day. It was nice to bring Simon and just be a family and be with families. We had a busy week with Simon last week and I saw 5 different specialist last week for Simon. Mostly it all went well. Our immunologist from Washington, Dr. Uzell, was in for the last time. This saddened me quite a bit as I value her expertise on NEMO and look to her for alot of guidance with the transplant. We will probably end up following up with her twice a year in Washington at the NIH. Since the TLRs came back and showed simon has some immune function that he did not have prior to transplant and his T-cells were up with the last vntr draw and he essentially was doing good and looking "fabulous" we were told not to transplant him again right now, but it could change in 3 weeks again. Its a relief to us but it always puts worry into our minds as to "when" it will have to happen. We pray never. We get blood draws again tomorrow and will find out this week where we are at. I'm scared but hoping for the best. Simon continues to not eat anything and we are feeding him by G-tube 20 hours a day. I hope that picks up in the next week where he will want food. Its so hard to see him not want to eat. Hes pretty tired alot too and we can't have him out in the heat much so the girls and I are keeping busy with alot of projects and we go out when simon naps and swim and have met friends at the parks too. So things are good. Today starts the girls T-Ball so Dave is so excited. We are all going to watch them today and maybe out for a pizza and ice cream (its the simlple things). Hope everyone is enjoying life and their summer. We ask for continued prayers and a Miracle. God Bless. Tracy and David
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
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
Seems Simon was missing his nurses too much on 4 West and he needed to get his flirting time in so we are back at Childrens this morning. He woke up yesterday with a swollen bump on his head and vomitting so I called and they wanted to get an MRI and CT scan with dye and check his spine as well for blockage. We are still waiting for the results. They did this last night and he was in recovery until almost 10:30 pm. He slept pretty well but is irritable and not himself today. They most likely will do another LP (spinal tap) to relieve the pressure and hopefully just need to add meds to keep it at bay. Its very scary but still, Simon smiles. He is an amazing, tough kid. Tougher than I. Dave will be coming up here tonight as I have an appointment for myself and we are hoping to get Simon well and out of here in a day or two. VNTRS are getting drawn today and I talked to Dr. Uzell from Texas last night as she was flying back to Washington, shes such a jet setter, and she assures me this pseudo tumor has nothing to do with NEMO and nothing to do with the transplant so we are not sure still if Marriana will have to be reharvested but its looking like Simon will need a boost, so that stinks for her. Please keep praying, God is listening, its just taking time and we have to get through this. Please keep us in mind for your daily prayer. need a mocha frappacino (I know I never used to drink coffee, now I"m hooked on these things) Take care, Love Tracy and David
36 May 31, 2006 at 07:10 PM EDT
Well you know if you are hearing from me twice in a day that something is up. I made an unexpected trip to childrens today to have a spinal tap done on simon. The pseudo tumor was causing too much pressure and making simon very irritable and throwing up more. So we spent the afternoon there. I had alot of time to think about things and cry my eyes dry on the trip there, through the spinal tap and on the way home so hopefully I can regain my strength because we are going to need it. VNTRS are put off until Wednesday of next week becuase these past two days have been too much for simon and myself. We have to see ENT on Friday as well as surgery for the G-tube (Dave will be making this trip so I can spend alone time with the girls) which I know will not be necessary b/c Simon is going to start eating great tomorrow. (wishes do come true right) and back at it next week with VNTRS on wed and hopefully results from the TLRs to help us make our decisions for the next round. We seem to be back at square one on almost our 100 day marker. It stinks. Marriana was really crying to us last night that she doesn't want to do the cells again. What, as a parent, do you do? Its not a place anyone wants to be. I have to say thank you so much to Dr. Jacobson who rotates out of clinic next week and I will miss him and Kim who helped me alot today, even when I dropped my fresh frozen mocha coffee all over the floor, and to Katrina, and Jenny and Jane for their help with Simon and my emotions today. You are all amazing and I know you will make Simon better. So I pray and pray and know its in Gods hands, I don't know what else to do. God Bless you all and thank you I"m sure your hands are tired too from praying for us. Tracy and David
35 May 31, 2006 at 09:41 AM EDT
Hello, well yesterday was a long day at the hospital. We had a clinic appointment and Simon had to get alot of blood drawn for the TLR testing to see how Simons immune system is functioning and since they took so much I have to go back with him on Thursday to get more for the vntrs. This week has been very emotional for us. Simon had a rough weekend and we are pretty sure his pseudo tumor is back. He is throwing up and not really interested in taking much food and is very restless at night. So we are feeling deflated. After stem cell we went to GI and its going to happen where we put in a G-tube for Simons feeding. That will be directly into his stomach and at least the tube will come out of his nose and throat. It seems to be one thing after another. Day 100 would be June 9th but it doesn't mean anything to us because his counts are so low and we are looking at reharvesting Marriana for more cells. It completely SUCKS and if you can't tell I'm very angry about it.
On the good news Jack and Cooper are both doing great. These are other NEMO boys who were transplated and are finally looking to leave the hospital and go home. Congrats to you boys and their families. Being in the hospital is no fun. God Bless you all.
