September 2007 Archives

Just a short update tonight and I'm going to bed. First off thank you so much for the outpouring of care you are showing our family. I so appreciate all your concern and offers of help so I can get some sleep. I wish I could take you up on it but I'm just not a good one to nap unless everyone in the house is out or alseep. I plan to catch up this weekend. Thank you Sue, Camille, Janet and Dale for the offers and all who have conveyed concern for us. We will be okay. But know it is so appreciated.

We put simon back on steroids and another med to help heal his gut. We had our webinar with the other NEMO families and Dr. Orange and it was explained to us that the transplant does not repair any NEMO that does not work properly in the other parts of the body just in the blood and immune function there. So since NEMO is expressed in all parts of our body to make all systems function (the master switch), the areas like the GI tract remains with nonfunctioning NEMO because the intestines etc. are not transplanted and therefor not fixed. Its all a bit confusing but it may be a lifelong issue. Our hope and continued amazement with Dr. Orange is that he strives to find ways to cure or relieve these such issues and for that we are truly grateful. So I enjoyed the webinar and felt uplifted by the other families and Dr. Orange and realize that we have to find a way that works for Simon and our family to battle this latest upset and push forward to make things calm down and heal so that no bacteria slips through the holes formed from the inflammation and Simons gut can heal and he can start to feel better. Tonight I ask, as you all are already doing, for prayer for strength for us and our son to prevail in this area as well as a full functioning successful transplant of Marrianas working cells. Thank you all so much, now I will sign off b/c I can't even make sense of what I"m typing. My Wishes go out to the Dunbar and Harris families who will be venturing into transplant come early October. Remember the NEMO familiy is here to support you all. God Bless. Tracy

I'll try to spare you all the dramatics of my last 24 hours. Simons diarrhea, stomach pain and raw butt have returned with a vengence. He started stooling more yesterday and by the time I changed diaper number 11 I knew it had come back. We stopped the steroid after day 6 and that seemed to make all the difference. I don't think the pulmicort is helping at all and I hate to think he will have to be on steroids to control this. That is a drug that is not good long term and through the first transplant he was on major doses of it so I was glad when this time around he was steroid free. I had a major meltdown at 3 am screaming to God why, why why? I just don't understand why one little boy and his family have to endure so much. I think the sleep deprevation is really getting to me. There is nothing more to ask but for prayers of relief and quick. Simon is very droopy today just wanting to watch tv and I think I'll join him and try to catch some sleep before our webinar at 12:30. I did call the doc this morning and asked him to page GI and consult on what to do next. I don't know what more to do. Please pray for relief. This is our major issue now and it seems to go from one major thing to the next without a break in between. Its really hard on us all. It breaks my heart to see simon endure so much. You can tell when he feels pain because our spirited, happy all the time boy is sad and that really hurts me. Thanks for sticking with us. Please continue to pray. God Bless. Tracy

Today we went to clinic.  Had labs and Jenny replaced Simons port.  He had been complaining about it all weekend and actually when I told him we were going to have it "fixed" he was very excited to know Jenny was doing it.  The labs came back ok.  I am hung up on some liver counts that are elevated but the docs tell me they are not worried b/c he is on tpn and they don't expect to see that as a trend.  Otherwise besides his white blood count being high due to the steroids and a few other things like his hemoglobin being lower than usual, things are ok.  As I type this I don't feel okay after writing it.  Simons hemoglobin has been tending downward for the last month or so.  It makes me nervous and when I asked the doctor today why that would be 302 days post transplant she said "honestly I don't know" so pray that number comes back up.  He also has had some goop in his eyes the last two days and doesn't seem to be an infection but it has to be watched.  They opted to keep him on tpn for the next week at a 25% decrease of calories and fluid to see how he does and hope to get him off of it in a week.  Its a great tool but they can't be on it too long and I hate having the port always accessed in his chest.  But he did jump in weight.  He is up to 11.9 kilos or 26.18 pounds.  I know some of that is water retention from the fluids but he has been wanting food everytime I turn around.  Its just not good food.  He wants cheetos and bologna and soup.  Seems to be his favorites lately.  Tonight he chowed on pork tenderloin, double fried potatoes and cheesy broccili.  I couldn't stop him.  Steroids are great for that at least.  I hope it continues as we get him off it in another day.  His stooling is not as much maybe 7-8 times a day but its still pretty loose so has it been a cure-all, no, but it has helped and I hope it continues to improve.  We are blessed to be having a webinar (seminar but on the web) with Dr. Orange for all the NEMO families on Friday where we can ask two questions so I turned mine in and am hoping its a great informative meeting of the minds.  Dr. Orange is gracious enough to allow us his time and expertise so for that we are so grateful.  On my exit here I'd like to say the vntrs are stable at pretty much the same numbers as a few weeks ago and we are down to .2 mls of cyclosporine a day.  So hoping in two weeks to be rid of that immune suppressant for good.  Please pray all stay stable in that area, improve in the GI system and continue to eat and drink like a wild man.  Thanks for check in.  God Bless you all and special blessings to my second cousin Berdee.  Rest in peace.  Love Tracy

Okay sorry for my delay on the updates I've been way too exhausted to think. Friday I went to clinic and Simon received a big dose of steroids to try and calm down his imflammation in his colon. This of course was not how I wanted the diarrhea to end but it has seemed to help. The steroids have made him very very moody and irritable and he is not managing his anger too well, which for Simon is extremely unusual. Its hard to see him like this as he is such a happy kid. Just another side affect we have to deal with. Along with that he received pentamadine and started pulmicort meds via his g-tube twice a day to maintain the inflammation and hopefully keep it at bay so the diarrhea goes away and he can eat and drink and feel good again. As I said the stooling is cut in half at this point and this morning I woke up to a pasty diaper instead of liquid so that was good. We will have to see how it goes. He receives 4 more days of steroids, todays dose is the last heavy one and then we cut it in half tomorrow. I can't wait to get rid of it as its a big immune suppressant and does have affects on his organs and blood counts. His hemoglobin has been going down slowly and I pray that rebounds as well. He has not received blood products for a year probably. He is still on the TPN and every morning he wakes up puffy and throws up. Not sure if he just can't handle it or if its the saline to flush the tube or what. It takes him all morning to recover from it and we have even increased the infusion time to 13 hours. I pray and ask you to do the same that once the steroids stop and we continue the pulmicort he can be maintained and come to normal with his stools and eat and drink well so we can get off the tpn and maybe not need as many feeds. I"m trying to think this could have been another blessing to maybe turn around his oral intake and push us forward in another direction so we may continue to heal. Today marks day 300 post transplant number two. Its hard to believe and you all know it has not been an easy road but with all of your prayers we are making it. Simon and I both have chest colds which is not good so pray that passes very soon without further incidence. I have to return to clinic on Tuesday and I pray the labs look good and we are on the road to stability and healing, for good. Thanks for checking in and for being there for us. All the posts felt really good to read. We managed to have some fun and attend our oaktoberfest on friday with friends and the kids including simon ran around dancing in the streets. It was very cute and brought tears to my eyes. Simon just wants to be a kid. Yesterday was resting and today the girls are dragging me to toys r us to spend a gift card (thanks uncle mike) that has been burning a hole in their pockets. So thats it here. I'm still recovering from sleep but dave was on last night and will do it again tonight and this time I think I'll sleep in the other room so I don't get up everytime he does. God Bless you All. Love up your family today. Tracy

First thank you for the post on this page. They mean so much. Simon has not really improved and I have worked hard through phone and e mail to get doctors to coordinate and come up with a plan to help him and have talked to other NEMO moms and things their docs have tried. I'm in between a rock and a hard place b/c I now have a plan thanks to Dr. Orange but I'm not sure I like it. Starting tomorrow for 6 days Simon is to go on steroids. I hate them and he has not been on them since the first transplant. They cause alot of havoc. Then he is to start an oral form of pulmicort. Its an asthma medication. The thought is that it will relieve the inflammation and help calm the gi tract in the colon. This has been used twice before with NEMO patients with a 50% success rate. It does lower the immune system so that is where my hesitation comes in. None of this is easy and the sleepless nights are not helping me be clear minded. I will discuss it further when I go in tomorrow for pentamadine, labs and iv steroids. Please pray we are making the right decision and it changes things in such a positive drastic way it paves the way for others. I am going to hope and get some sleep and pray simon doesn't poop as much tonight. Still I'll probably get up 10 times to check his raw butt and make sure its not sitting there. He chowed at dinner saying "mmmmm this is good" he always says that now its funny, so I hope it doesn't hurt him through the night. We lengthened the TPN hours to 12 so I started him early so I can disconnet the IV and get the girls off to school because last night and early this morning he threw up. Too much dextrose, too fast. So pray for a sleepfull night. Thank you for the prayers. God Bless Tracy

I'm feeling very sad and frustrated today. I cannot even begin to tell you how this is taking its toll on all of us. Simon is not any better today, maybe worse. His diarrhea was in full force last night and I was up every hour checking his diaper. Today he is wiped out. He has no energy and neither do I. I have contacted doctors in Washington and Philly to try and see if there is anything we can give him to help. I was told by Dr. Orange, the NEMO expert, that this seems to be an emerging problem for the NEMO boys. Well thats just great. We always knew the transplant would not fix the GI only the immune system but you hoped it would get better. We've had periods of normalcy in the GI area and then whamo out of nowhere comes 5 weeks of this. I ask that you continue to pray for Simon to have relief. He really looks like he is dwindling away to me. I give him a bath and change him and he looks so thin. Its so heartbreaking. We are upping the calories in the TPN tonight and I am only giving him fluids today. Please pray we start to see improvement and find some answers. thanks tracy

It has been a long wait to hear our news today but thanks to all the believers and the prayers we found out it is NOT, thats right NOT GVHD (graft vs. host). The preliminary tests are showing really no signs of that. The other viral studies have also come back negative and they are running them again tomorrow to make sure so while the sense of relief is here we still want the prayers for complete healing. Simon was hungry today and ate and didn't have alot of stomach pain so hopefully that is a good sign of what is to come. The diarrhea is still going on strong in varying colors but we are hopeful that we will turn around soon. They are now going to look into other things that could be causing this. When you are on feeds whether by g-tube or ng tube it does affect your system differently and will cause some issues so now we turn to GI to help us sort it out. We thank God it is not GVH and pray for simon to be able to move forward soon and completely heal and get off all his drugs soon. I will talk again with the Doc tomorrow. He will remain on TPN and we might increase calories there. With having to change the caps everyday in a sterile environment I hope Dave and I don't kill each other. Thank you for sticking this one out and the continued prayers. let me know your out there and post me a message. I miss getting them. God Bless you all. Tracy

We had a nice day today. After being up all night again with Simon having one after another of poopy (I should just say mucus water) in his diaper Marriana and I were up from 1:30 am until 4 am with her tummy ache, we all managed to sleep in until 8:30 (which really did not make up for the week of lost sleep) but we dragged ourselves out of the house and headed to Indiana for the Wizard of Oz fest. It was a good outing and the most amazing thing about the day was that we let simon partake in some small carnival rides and he just loved it. He sat on some rides with his sisters and to see the three of them laugh and have a great time out of the realm of our house warmed our hearts more than we can report tonight. I write tonight to ask for prayers as maybe tomorrow we might hear about the pathology on the scope. After paging the dr. on Saturday and him saying simons symptoms certainly sound like GVHD, I want to again ask that you pray it is not that and we can have something fixable and move forward. Simon ate some potatoes and meat and bread for dinner and I'm honestly hoping that more good than harm comes from that. God Bless all who are watching and caring. My whole house is now sick with colds so I pray that doesn't last long or cause simon any additional illness. Thank you for the prayers, keep them strong and coming. I'm going to bed, school night ya know and I have a home health nurse coming in the morning to draw simons blood. I need some sleep. Thanks for checking in. God Bless Tracy

Yesterday proved to be a VERY long day for us. Simon did not get in for his scope until 4pm and he was asking for food until he fell asleep at noon. Hard to hear that when he barely eats much. The scope went ok. I have no answers yet really as they are waiting on pathology. Please pray it is NOT GVHD (graft vs host disease). It is very hard to get rid of and takes forever and alot of meds get added back on that will hinder his immune systems return. So pray for that please. He was put on TPN (iv nutrition that dave and I will administer every night for 10 hours) and I was sorda angry that the bags arrived containing only 340 calories. If his gut is suppose to rest how can that amount even help him. Last time he was on it he had headaches and we think it was from the fat in it so this time that was eliminated. Dave and I wanted to turn in early but all of the medical supplies arrived close to 9pm, we had trouble getting the pump to work properly and then once we mixed the TPN we went to hook simon up only to find the cap on his port IV was not a home health one and we couldn't hook him up. After looking through all the boxes from past deliveries we found a cap and did a sterile cap change and finally at 11:30 pm, got him hooked up and going. He has poop 4 times in the night which baffles me since he had no food yesterday and still is having it today. Not to be gross but its mucus and green or brown in color. This morning he was starving and ate toast and a small amount of sausage and eggs and immediately said his tummy hurt. I don't know what is going on. To top it off he and I both have head colds of stuffy noses and my throat hurts so not sure how he is feeling there. He ran a low grade temp last night which he never does. Today I spent the morning with the girls, marr to dance class, isa and I went to a sport sale friends of ours were having to profit charity and then to dunkin donuts for some one on one time. We ran to target and jewel and hope we are stocked up for the next week and a half for sure. These are everyday things but in our house it is hard to fit in grocery shopping as I cannot take simon during the day. He is sleeping now. I pray the sleep gets him well and we can move past this once and for all. It was just June when he was on TPN and its just not right. The GI doc said the further he went up in Simons colon the more angry it looked. He did biospys of those areas. Simon also had a mole removed that he most likely acquired due to his two times of chemotherapy and it has been growing, shrinking and changing so we removed it yesterday. Pray that its benign. Okay so tomorrow we hope to go to the Wizard of Oz fest and have a little fun outside with the kids. Today we rest. Simon has blood draw tomorrow through the home health nurse so please pray for him to heal and get better. Its been 4 weeks so far of all of this. We are tired and just trying to keep up. I want to see my spunky boy back as he is pretty droopy now for sure. Please pray hard for him. Thanks God Bless Tracy

I'm going to start this out by saying that we are still 95% donor cells and the breakdowns are even higher so that made me very happy. They also said for his age his flow cytometry is normal. That is where they look to see if he has the cells he needs to get his immune system going. So that was great to hear. On the flip side the last few days have been rough to say the least. He is still having 12-15 diapers a day of diarrhea and is having stomach pain the last two days. Nothing is staying in him and now he has a head cold. I have been doing everything to try and support him fluid and calorie wise but its not helping. He cannot tolerate the feeds b/c his stomach starts to ache and he has thrown up a few times as well. He has lost weight and today, looked pale and sick to me. He still trys to play and have a good time though but it really wipes him out. Hes tired. After two days of discussion and trying to figure out the best plan tomorrow we are going in for IVIG and a scope. He will be put under for the third time. They are fearful he has GVH is his gut. This is very scary to us as if it is that, he will have to remain on cyclosporine and maybe steroids for very long time, maybe years. This will not allow his immune system to work normally. They are also looking for disease in the intestine and I have asked for him to be tested somehow for microbacterial infection. Nemo boys are proned to it. I ask this of all of you, tonight at prayer time please say a heavy prayer that Simon does not have GVHD, that he shows no sign of a new disease and that maybe, maybe its just a viral thing he has not been able to kick. I honestly thinking of the possibilities has put me into survival mode of function and I cannot bear this little man to suffer any more setbacks. Please pray for complete healing along with all the other prayers. We have not slept much this week and I am hoping we can spend the weekend catching up on some of that and relaxing with our whole family at home. Simon will start iv fluids and may be put on TPN tomorrow, again. We need your prayers. Otherwise, as typical Simon, he is in good spirits and playing and talking like the trooper he always is. God Bless. Tracy

Well things in the stooling area are not improving. We added the fiber to the feeds and it just seems to be making him poop more. We are changing poopy diapers during the night twice at least and first thing early in the morning and he is having at least 7 more during the day. We are pretty tired. We are just laying low this weekend and today was low key with a surprise visit from Uncle Tom, which was nice and a trip to the school to practicing riding bikes and playing with friends. We have some family in from out of town due to our Aunt Tina passing away and will be with everyone tomorrow for the wake and funeral. Its sorda hard to all go and worry about Simon being around everyone but we will take turns paying our respects and hope to have lunch with out of town family. I have to take Simon back to the hospital on monday for labs and not sure about vntrs but if all looks ok we will drop the cyclosporine again. I am anxious to get Simon off of that now. So while Simon is eating the feeds have just started to pick back up and with the stooling I imagine the weight is just keeping stable, I hope. I hope to also talk to GI and see how the other tests came out on MOnday. I will let you all know after that. Please pray for the GI tract to heal up and stooling to stop and Simons healing to move forward. Thank you and God Bless. Tracy

Well here is the short of it today. I took simon down to GI after he had a pretty good day of no diarrhea except for once. Due I"m sure in large part to eating nothing for 24 hours except pedilyte. They want to run some more tests to rule out things like EBB virus, CMV, etc. So since Mr. no stooly butt wouldn't cooperate and give us a sample while I was down there I am going to have to run it down after his morning one. We opted to again just infuse pedilyte tonight because we are afraid to give him the 30 cal pedisure since he was all about asking for food today and I did give him 3 small meals and I don't want to force his stomach to work harder so a rest from the pedisure is okay with me and he needs sleep. We are switching him to some with fiber which will be deilvered tomorrow to try and firm him up anyway. That is about it here, I'm tired and will report more on how hes doing when I can think more clearly. Thanks for praying and keeping up with my family. My goal now is to get him off the cyclosporine and see those power donor cells or Marrs work their magic. Please pray all improves and goes as it should so we can move forward. God Bless. (to all the NEMO families out there we set up a NEMO family group for e-mailing information and would like all our NEMO families to join. Please let me or Andres know if you did not receive the invitation. Thanks). Tracy

Today I want to wish Jack a Happy 5th Birthday. We lost our dear friend Jack back in March and today he would have been 5. We know Jack continues to watch over us and to help our sons get through this process of curing our NEMO. May his family feel the love of all of us who care so much for them and want to honor Jack today. Simon is sporting his orange tank top and blue shorts and for his nap story we read finding Nemo. Charolette asked that we all wear blue and orange to honor jack and send a photo so I will do that and check out his webpage for their thoughts today. Cure4Jack.org

Simon continues to have a stomach issue. It seemed at times over the weekend he was doing better but no, as of last night he vomitted up his feeds again and has had just liquid coming from the other end. I am now on a 24 hour clear liquid diet with him and he is heading down to see Dr. Corhan our GI specialist tomorrow to discuss the possiblity of another scope. If I said I was doing okay I would not be telling the truth. I cannot even begin to explain to anyone what this feels like and come close to how it actually pains my heart everyday. I thought we had mastered this part of his problem. Only two months ago we had solid stools and our eating had picked up. Now we are back to the same place only seeming worse. As I watch his already tiny frame get smaller I wonder how to get through it all. I can't help but wonder if this has anything to do with dropping the cyclosporine levels. It is the immune suppressant. He seemed better at higher levels of it. Its sad and stinks because it is something we have to get him off of. I think the last two weeks have been emotional with school starting, me feeling a bit hard on myself for our situation and not being able to be there like I really want to for all 3 of my kids. I'm sure not getting any sleep helps the situation at all. I don't know if this is just something we have to live with or if it will get better. I talked with another NEMO mom today and she too struggles with all the emotions and daily grind of it all. The not eating and GI issues and the isolation and lack of socialization. It is so very hard to have to deal with and see no light. Simon still is your typical 2 year old with his spirit and love for life but he feels crappy and isn't resting or eating so while we are thankful for his wonderful spirit it is disheartening to be back at this same spot 280 days out of transplant number 2. I want it all to mend so we can move forward and deal with ED issues. Please tonight before you lay down to rest, please pray hard for my baby that he can heal from this virus and heal from this transplant and let his new NEMO start to kick in and work so our lives can move forward. Put your heart into it as I need to feel the love Praise be to God. Thank you. Tracy

On the nights that I put simon down I always tend to linger about with him just staring at him. Him and I say 3 prayers and then we ask for complete healing for him and all the NEMO boys. Tonight I had a hard time walking away from his crib. He looks amazing laying there. Long and peaceful, happy but he has felt terrible the last few days. The diarrhea is less but we have also cut down on the pedisure feeds alot and only infused pedilyte last night to give his gut a rest from the 30 cal. an ounce. He is eating a little and drinking less. He also is telling us his stomach hurts so I'm really not sure what is going on with him. His diarrhea is awful and it really has me bummed out. Sometimes I feel like this will never stop on its vicious cycle. We have made it a point to get out everyday and do something for a few hours with the kids to keep some sort of normal level here and its been enjoyable with a trip to the zoo and a walk a scooter ride today but Simon really couldn't deal with the heat today and we were forced to put our air back on to comfort him. He just gets so limp. It breaks my heart. He also has broken out under his arm pits and behind his knees and groin area with a little bumpy rash. Its hard b/c he doesn't sweat there and I think its just his skin reacting to such heat there. So we keep praying for this to get better and we ask that all of you pray for him to heal, for this infection, and completely from this transplant and soon. Its hard to believe we are only 2 1/2 months away from being a year out of his second transplant. The time it goes so quickly yet drags on so long.
I would like to share some joy that Connor our NEMO friend in Indiana has 100% engraftment and is doing well with good numbers and feeling good enough to perhaps go home on Tuesday, this has to be a record. We hope our boys transplants are helping others to have a more tolerated transplant. None of it is easy for anyone. Great job Connor and Smith family. Kudos - Keep healing. Please pray for them all. God Bless. Tracy and Dave