October 2007 Archives
Our vntrs came back of a 90% overall which didn't make much sense to me since his t cells were 99% donor but whatever, he is doing better. We are skipping the remicaid this week and continuing on the xifaxan for two more weeks for the gut. We don't want to stop both at the same time because we are not sure which one is helping more. I am happy to skip the trip to clinc this week and I happily pulled simons port needle this morning after I hep locked it so I hope we can glide along and see nothing but positive things for the next week and lower his steroid once again. He is down to 2 mls a day which is still a good dose but not the 6 we were tapering him down from. He is eating good and drinking still remains an issue so I have been boulus feeding him fluids and am going to try that during the day and maybe two more before I nod off to sleep at night. I hope it can be enough and he will take in some as well. Not sure why drinking remains a problem. We have noticed some skin issues resurfacing with the taper of the steroid, I wish someone could tell us what it is. I know Jacob continues to suffer from this as well so we are all stumped and longing for some answers.
We are very excited for Halloween and will be watching the girls school parade tomorrow and then out to trick or treat as a doggie, black cat and a princess. So much fun. Please continue to pray that Simon continues to recover and not relapse and we can move forward and have a full working immune system with minimal gi issues. God Bless you all. Daves mom continues to recover. Her discharge date is to be Nov 7, so pray she recovers fully as well. Thank you all. God Bless. Tracy
We are very excited for Halloween and will be watching the girls school parade tomorrow and then out to trick or treat as a doggie, black cat and a princess. So much fun. Please continue to pray that Simon continues to recover and not relapse and we can move forward and have a full working immune system with minimal gi issues. God Bless you all. Daves mom continues to recover. Her discharge date is to be Nov 7, so pray she recovers fully as well. Thank you all. God Bless. Tracy
Today I was blessed and honored to be my nephews sponsor for his confirmation and to be in the presence of the bishop who did the service. While sitting in church I realized that one of the biggest reasons we are here is to serve our children, all our children, with love and understanding and support. I thought a lot about my family, both immediate and extended. I realized that the time we put into our children is what makes them become who they are and no matter how hard it is at times or how much time it takes and takes away from the things we might want to be doing daily or wishing we had more time for ourselves or to be able to do things we used to do in our former lives before children, one thing is sure, our children need us and rely on us even in times when it doesn't seem them need or want us at all. No matter what we need to stick by them and give them space when it is needed but also be their guiding angel when they least expect it. We have been thrown a curve in our thoughts of how raising kids is hard with the birth of Simon and all his medical issues but what no one else who is not in our situation knows is that he has been an amazing source of spirit and learning that we could have never gained without him. He loves everyone he encounters. He talks about people after meeting them for the first time and remembers more than the brightest of minds could remember if they had written it all down word for word. He clearly surprises us everyday with his wisdom, love for life and the ability to make you smile and cry all in the same minute with his spirited and loving personality. We are so blessed and today was a great day of family and reflection and prayer that allowed me to look at what we have and know that our home is so full of all things that are gifts from God and I will not let a day go by that I do not remind myself of that no matter how tough times feel sometimes. I watched Simon and the girls laugh and play and do things all weekend long that warmed my heart and brought tears to my eyes in the spirit of love and happiness. It amazes me how loving and giving Simon is to everyone and how much he just loves being with everyone. As we left my sisters tonight he said "mom that was fun". Which is something he always tells me when we leave the park, or friends or just running around on the school grounds. He just loves to be with everyone. As we drove home we were lucky enough to see a Harvest moon. And it was perfect. Orange and huge. A true reflection of the bountiful life we have and an end to a great day. Since the girls are studying moons and night skies at school they were especially excited. We all talked about it and Simon with his curious mind said "Isa is the earth moving" after Isabel explained how the earth rotates and the moon goes around the earth. "yes si" was her response. He absorbs it all and just loves to be a part of life. it's a beautiful thing. They all amaze us.
After a 3:30 am wake up call by our never ending talking son
Simon and I headed down for our long day of infusions. All went pretty well and we are back home enjoying the amount of energy that I'm not sure where Simon stores it all up from but its always present. His stooling continues to be about 3 times a day and its getting much more consistency to it. We are scheduled for another infusion of the remicaid next week but if he continues to go on this course we will cut the prednisone on Monday again with the hopes of having it gone in the next couple of weeks and we might be able to skip the remicaid and go to a every other week infusion which would be sweet. I pray this is the answer to the gut problems and that with time, it can be healed and "normal" whatever that is for NEMO boys. We have a big weekend planned with our nephews confirmation and a few other outings so as long as everyone stays healthy we will be able to bring Simon along and be with family. That is one thing that continues to be so hard is the isolation. Since these are small affairs we will walk the line with caution but spend the time nonetheless to get a much needed visit and some normalcy. Please pray that we continue on a healing path. We plan to stop the TPN by tuesday as we are doing it every other day now and I will have to push pedisure more now that ever to make up the calories and fluid intake but I can be pushy when I need to. I'll just have to battle my sons very determined personality and pinching. The steroids have turned him into a nightmare 2 year old. Hes seeing the naughty stool alot these days. But thats all we would want to see so thank you for checking in and the prayers. Please keep them coming as they help so much and we still need them. Please add baby Margo to your prayers again as she is on a rough road and needs the prayers too. God Bless you all. Tracy
Simon and I headed down for our long day of infusions. All went pretty well and we are back home enjoying the amount of energy that I'm not sure where Simon stores it all up from but its always present. His stooling continues to be about 3 times a day and its getting much more consistency to it. We are scheduled for another infusion of the remicaid next week but if he continues to go on this course we will cut the prednisone on Monday again with the hopes of having it gone in the next couple of weeks and we might be able to skip the remicaid and go to a every other week infusion which would be sweet. I pray this is the answer to the gut problems and that with time, it can be healed and "normal" whatever that is for NEMO boys. We have a big weekend planned with our nephews confirmation and a few other outings so as long as everyone stays healthy we will be able to bring Simon along and be with family. That is one thing that continues to be so hard is the isolation. Since these are small affairs we will walk the line with caution but spend the time nonetheless to get a much needed visit and some normalcy. Please pray that we continue on a healing path. We plan to stop the TPN by tuesday as we are doing it every other day now and I will have to push pedisure more now that ever to make up the calories and fluid intake but I can be pushy when I need to. I'll just have to battle my sons very determined personality and pinching. The steroids have turned him into a nightmare 2 year old. Hes seeing the naughty stool alot these days. But thats all we would want to see so thank you for checking in and the prayers. Please keep them coming as they help so much and we still need them. Please add baby Margo to your prayers again as she is on a rough road and needs the prayers too. God Bless you all. Tracy
Things here remain pretty much the same. He is having an every other day sorda more stooling thing going on. It is nowhere near as bad as it was so I"m hoping to continue to see progress. He is in good spirits and all over the place. Up early, running until we put him down at night. Naps have been nonexistent again. I"m trying hard today as I have alot of work to do. Don't seem to have the time for my job lately. wonder why? We go back on Thursday for our second dose of remicade and pentamadine. It will be a long day. The girls will be on their first field trip and I"m sad I cannot go along, also nervous for the whole bus ride thing. I'm trying hard to get simon off of the steroid and the tpn. We are going down on both of them and hoping simon can keep up and get the nutrition and fluids he needs without the tpn. I'm really pushing the drinking but he only will take in so much. He is much better at it then he used to be so I hope as we take him off the steroids that continues. He is excited for Halloween and really wants to be a puppy dog. Our friend amanda lent us a scooby doo costume so we are going to doctor up some ears and go with it. He seems excited. Please continue to pray that we can get the possible gvh under control and get him off all these suppressants quickly. We all are getting flu shots this week (per the doctors order as we have never done this in the past) to try and keep simon safer this season. Hopefully that is all here and I will write after I have clinic. We still are not seeing a stable number for the igg so the ivig infusions continue, we'll most likely be back down to Childrens on Monday for that. Enjoy the beautiful fall day. Love Tracy and David
After a long day at the hospital I have 5 minutes to update and then we are off to parent teacher conf. for the girls . Simons official diagnosis is GVHD (graft vs host). While my stem cell doctor is still not convinced because the apotisis (dead) cells can look like that and also not be. But the pathologist and others are saying it is that. Strangely overnight only 2 poops and today so far only 3 so I don't know. We did go ahead and start remicade today and simon will get an iv infusion of that for at least the next 3 weeks which will severly suppress his immune system. We are to protect him from any cold or any sniffle for that matter from anyone. So basically the isolation begins again. I pray that this treatment works and quickly and stays steadfast as a cure to this and that its a short course of this med and the issues stay gone. It could go on for 3-9 months. We ask that you pray for a quick recovery and this drug works, along with it keeping the problems away. Otherwise his labs looked great today so I am going with hes on his way to being better. I just hope we didnt' start a new drug too soon when he might have healed himself. Always questions. THanks for checking in. I'll keep you posted. God Bless. Please keep baby Margo in your prayers as well to strengthen her little heart. Tracy
I wish I could type an intelligible blog here tonight but to be honest I'm not sure I understand completely what my doctor said to me today even after an hour on the phone and 300 questions and alot of frustration. So pathologist and my GI doctor think the tissue shows signs of graft vs host. Something we did not want to hear. Our stem cell doc is thinking outside the box and has done some research regarding the gut and NEMO signaling. So he will not say one way or the other if he thinks it is or not. He is conferring with doctor orange to see if what he is thinking to work in this case can truly work. They want to start simon on another immune suppressant that has to be administered by iv once a week that will weaken his immune system in an effort to calm down what is going on inside his gut. Apparently there are proteins in the gut that has been proven in lab animals to not function properly because of the breakdown of bad nemo and the signaling pathways. Because the proteins are not being made bacteria is passing through too quickly and not being used properly causing problems and diarrhea. I don't understand it all and honestly the lack of sleeping night after night has left me a little brain dead with all this again. We are not sure what to do. One thing we are very upset about and feel we are 100 steps back is all the meds he is back on, the immune suppressant levels that he is at again, and the fact that his blood work indicates that we might be losing the engraftment. I truly don't know how much more we can take. Simon has been through way too much and our family is depleated in emotion and energy. We will fight and do whatever it takes for simon but does it have to be this hard? I was asked do I ever question my faith. Generally I don't I just keep plugging along thinking it will work out it will. But at the level of exhaustion I feel on a daily basis sometimes I want to just stop having to try so damn hard. Simon is a trooper but he has lost some of his energy, zest and happiness in the last two weeks. I looked at him in the back seat of the car today as him, mar and I sat waiting for Isabel to finish gymnastics listening to Junie B books on tape and he was hearing every word and repeating things he felt to be funny. I looked at him and said what did she say si? and he smiled and said cheese, cheese, cheese, cheese and I cracked up because he was dead on. And at that moment I said hes going to be ok. I think I have to run with that because I can't take the reality of it really. As I have and continue to ask for your prayers for our sons FULL recovery and complete healing. God Bless and thanks for checking in. Tracy
Seems like we are back at the same spot of worry and waiting as we were 4 weeks ago. Simon had his scope this morning and it does show change. There are ulcers in the lower colon that were not there 4 weeks ago. They sent for every viral and microbacterial germ along with absorption studies and things I can't even remember but they are covering all basis. I want to ask that you pray there is NO GVH. I feel more worried about it right now than I did only because they saw something there and the pictures clearly show it to. So please lift Simon up to the lord and ask that there is no Graft vs. Host and that whatever is causing this is something we can fix and quick. His cbc blood count numbers are all slightly lower. We have seen a decline in all his numbers every week for the last 10 so that has me concerned as well. Thanks for checking in and keep praying. I hope to know some preliminary things tomorrow. God Bless Tracy and David
Well the weekend is going well all things considered. Yesterday was a very busy day of dance class, block party activities and b-day parties. All the kids had fun. Simon hooked up with all the 12 year old boys and was enjoying playing soccer and football. They just loved him up and he was really having a time of it hanging out with them. It was nice to see.
The diarrhea is still going strong and the clean out for the procedure tomorrow is going ok but he can't eat at all today so I know by evening he will be a bear. My plan is to not nap him and put him down as early as possible. We have to be at the hospital by 7 am so Dave and I are splitting up and I will meet them down there hopefully in time before they take him at 8:30, it will be close. Please pray that they do NOT find GVH and that they find something that is easily fixed. We have alot of faith and I know we will get through this. Thank you all for your kind words and prayers. We need some really strong, extra prayers tonight for complete healing. Simon is a fireball and he will shine we just need to get him over this hump. Thanks to everyone and my extended NEMO family for all your support. God Bless. Tracy
The diarrhea is still going strong and the clean out for the procedure tomorrow is going ok but he can't eat at all today so I know by evening he will be a bear. My plan is to not nap him and put him down as early as possible. We have to be at the hospital by 7 am so Dave and I are splitting up and I will meet them down there hopefully in time before they take him at 8:30, it will be close. Please pray that they do NOT find GVH and that they find something that is easily fixed. We have alot of faith and I know we will get through this. Thank you all for your kind words and prayers. We need some really strong, extra prayers tonight for complete healing. Simon is a fireball and he will shine we just need to get him over this hump. Thanks to everyone and my extended NEMO family for all your support. God Bless. Tracy
It is with a heavy heart that I write this and ask that everyone get down on your knees tonight and pray for Simon. After a grueling day of phone and e mail communications I just found out that our doctors are afraid that all of what Simon is going through could be life threatening. They are concerned that at this stage in transplant the diarrhea has surfaced and nothing is helping. They are communicating with Dr. Orange who had a similar situation and everyone is very concerned. I ask that you please pray that Simon scope shows us something we can treat and he starts to get better. That his tummy aches and diarrhea go away and he can recover and heal 100%. Losing him is not an option, its just not. I know this must seem dramatic but after my conversation an hour ago this is the concern so please pray for him truly with your heart ask specifically to heal simons gut and make him well. God Bless.
Let me start by saying nothing has changed. Things are the same. Am I frustrated - you bet. I went with Simon to GI today and we basically decided that what we are doing, the steroids and other meds are not helping him. He is not processing food or digesting it or absorbing it. He is eating, probably due to the steroids mostly, but everything that goes in comes right back out in a similar form. So it is almost pointless. He is having stomach pain again. So we are rescoping him monday to go further up into the intestine and get more biospys and things to test and check into further for graft vs host and other viral issues. Not sure what, if anything will come of it but I pray for relief. Relief for Simon and for him to start and continue to heal to a full successful transplant of working immune cells and no GVH. He is all puffy with steroid face and moody. Along with it comes aggression. So that has been fun. I have been up most nights with him and all of this has really worn me out. Please pray this all ends with answers to fix the issues and to give us a sense of peace and being able to move forward. Daves mom continues to be in the ICU too with no answers and that is frustrating to us all and wearing everyone down. Please pray for relief for her. God Bless you all. Tracy
Well in the last 7 days Simon has had 4 meds added to his list of what was starting to be a smaller med list now is 8 meds in the morning, 2 in the afternoon and another 7 at night. And all of this with no significant sign of improvement. With alot of frustration and talking with my docs we are stopping the pulmicort and upping the steroid. Not an ideal plan but it seems the pulmicort is not helping at all. The steroid was the only thing that made a difference at much higher dose. So the plan (is this like the 12th plan of action for the diarrhea?) now is to up the steroids again and stop the pulmicort, leave on a bacterial fighter until next week when I go to the GI clinic and potentially switch him to a aspirin like anti-inflammation drug which will be less affecting his immune system. Beign on the steroids is not ideal and it does suppress the immune system alot so ...... I am hopeful that upping the steroids helps bring down the inflammation enough to start a new longer med that will give relief to this now 8 weeks of 14+ diapers a day. Please pray this works, please pray it does not affect simons immune system in such a way that it causes him donor number issues or additional illness and please pray that with this he can find relief and get back to normal 3 poops a day and off the TPN which he is still getting IV everynight and is starting to affect his liver numbers in the high range. Which is a bad side affect of TPN. At least he is happy and has his spirit, hes amazing. Thank you and we need your prayers for Simon and Daves mom. Please. God Bless Tracy
We had a nice weekend and Simon actually enjoyed his first ever pony ride. Had lots of antibacterial soap and sanitizer on hand after that one but he loved it. We were blessed to have an awesome saturday and night with all the kids and I felt very light and happy. Today I went to clinic and the labs look a bit worse than last week. Simons hemoglobin continues to drop with really no explanation other than they think its due to the inflammation in the gut and he may be losing blood there and perhaps the long bout of being on cyclosporine. I have to say I think that is a guess but what do I know at this point. So today he receives his last dose of cyclosporine. Which I am glad. He is still on the steroid and two other drugs to help his gut which has seemed to help to a point. We are still having 8 diapers at least a day. They are leaving him on the TPN for another week and it seems to be having negative affects on his liver now so I'm not sure what to do about all of this. I am very frustrated and feeling emotionally spent. I thank char for letting me bounce some stuff off of her as she makes me feel better and think differently sometimes. This was a hard morning for me and as I left Childrens I got a call that daves mom is in the emergency room. They thought she had a heart attack and she is having a scan right now so please pray hard for her. We really need her and love her alot. Please pray for simons gut to heal, quickly and for all his counts to normalize so we can move out of this two months of H--- and move forward. Gotta run and get the girls. God Bless you all. Love Tracy
