May 2006 Archives

33 May 22, 2006 at 09:03 PM EDT
Seems like a long time since I posted an update and thats because the weeks have been pretty uneventful. We only get vntrs every other week now and we were hoping and really feeling positive about this one. Unfortuantely that feeling proved incorrect for us today. The counts are down again by 2%. Doesn't sound like much but when they are consistently going down 2% with every vntr we are inching closer to facing having to go through this again. Its so discouraging and upsetting. Overall there is only 18% of marrianas cells working in Simon. It really stinks. We are trying not to think of what this might mean for Simon and Marriana. Its really going to be hard to see them both do it again. From the little we have been explained I understand it will be a "boost" and I think a little less involved but still the same there will be chemo and there will be a harvesting for Marriana. It is really alot to undergo for a 4 year old and a 9 month old. We are not there yet and hope it to not come to that but we are really on the low end of things.

Simon has not been eating the last 4 days and has been gagging and throwing up. This leads us to doing speach/nutrition therapy which he will be evaluated and set up on Friday and Simon has to see a surgeon to possibly get a G or J tube put right into his tummy because the ng nose feeds have been ongoing for 4 months and its too long and could be causing irritation in his throat and nasal canal. So that will probably happen soon. I think we are ready for it since he needs to get nutrition and we feel the ng does bother him.

I ask for prayers all the time, I feel disappointed when I feel the prayers are said and not answered. We do feel that Simon will prevail, maybe it will take a little longer but we are trying are best to stay focused, and still enjoy every second we are all home together. You never know what tomorrow will bring and I am seeing that happen all around me so if nothing else tonight, realize what you have in front of you, next to you, around you, and relish in the fact that there is no place else you'd rather be. God Bless. Tracy and David

32 May 15, 2006 at 04:29 PM EDT
Hello everyone. Hope you moms out there had a great mothers day. Mine was very nice. We actually went over to Daves sisters house and it felt so good to be around family. I was so nervous with Simon but everyone was so aware and considerate of our situation and I know David felt so good to be with his family. Simon seems to be doing really well. Hes eating ok and although he is still getting up last night he awoke a bit earlier and went back to sleep better. So I"m hoping we are reaching the end of him waking up. We'll see. Hes becoming a master again lately at pulling out his feeding (NG) tube and I've been doing my best to stop him before he totally yanks it and then I have to push it back in. Hes a stinker.

I wanted to say that I actually had a pretty bad day on Saturday starting at 5:30 am. Sometimes I guess I have a hard time with the realization that the things we used to do so easily now need to be added to a schedule and times figured out who can go where and do what and that we can't all do it together. Not to mention we are realizing that things we dreamed on doing as a couple for our future are probably not going to happen anytime soon. I started to think about moms in general. Just how much we sacrafice and give up for our family and how some can do that so well without expecting anything for themselves or never allowing anyone to know that they too need things but just always giving. Daves mom does that and for as long as I've known her, has always done it. I hope someday I can be that way. I think women in general do an awesome job of keeping it all together with kids, work, the house and things that go along with it, not to mention meals and obtaining enough food every week to cook it all and never really setting time aside or certainly not without feeling guilty for doing it for themselves. Well at this time of year I want to put my hat off to those of you who can manage to do all of this and never feel you need or want something for yourself. WE all need to take care of ourselves and our families but without caring for us, there would be no glue for the family. As much as the men think they are the rock behind the family, we all know its us women who make it all work. So just a little, maybe unwanted, reflection from me that we all need to apprecaite what we have and do but also to take time to refuel and give ourselves something back.
Simon goes to clinic on thursday for vntrs and cbcs and a few blood tests the immunologist ordered to check on his immune systems function and things so we pray simons numbers are stable or hell I'd prefer marrs counts have doubled. I'll keep you all posted. I wanted to thank those of you who have made our girls feel so special with the gifts and things you've sent to make them feel like they are still a special part of our lives and that people are thinking of them too. Its meant so much to the girls to get mail. They get so excited to open it and see who its from and then they talk about it all week. So thank you for the smiles. Take care, Tracy

We received the vntrs back late today. We have been on pins and needles and waiting five days to hear that the percentage is basically unchanged has kept our stomachs in knots. The percentage is at 20% still overall. At least they did not drop but we were hoping they would go up with stopping one of the immune suppresants. The bad news is Simons skin is flaring up with the redness and itching. Hes definately more uncomfortable and scratching alot. He is not eating that well and I'm trying to give him some table foods because the baby foods are not going over well at all at this point. So the journey goes one. I have a visit in stem cell on Friday and the immunologist from NIH in Washington is in and will see him as well Friday so we will have to wait and see how the next few weeks pan out. Keep praying. We have been in contact with yet another family who's 6 month old son was diagnosed with NEMO and he and his family now are suffering through the same heartbreak we have and continue to experience. These boys endure so much and we pray they all come out of this with healthy NEMO and can live normal lives. The girls are enjoying us all being home and almost daily Marriana asks if she will have to give more cells. Its hard to be unable to go places with them but at least we are all under one roof. God Bless you all and keep praying. The power of prayer should prevail. take care Tracy and David.

Well I haven't been updating the blog here but I plan to put in all that has happened very soon. We have been up and down with vntr numbers and were told that our daughters overall amount of cells is down to 20%. This is very bad. They have stopped the immune suppresant medicine and are hoping that it helps her cells to multiply. Frankly we are very scared and heartbroken. This means if this last ditch effort does not work, Simon will have to have another transplant and Marriana will have to be harvested again. We don't want to see any of our children go through this again. Not to mention the strain it is going to put on our whole family. The girls lives have stopped due to Simon not being able to be around people so that means I cannot really take them anywhere, not even target, during the day we are housebound. That is a beautiful place to be compared to what might lye ahead. We were so hopeful since Simon seems to be doing so great. Hes laughing, getting stronger, starting to push off on his feet and trying to turn over. We fear putting him back in the hospital will set all of this back so far that it will be so hard to catch up. He is now 8 months old. We were feeling like the worst of this would be behind us but now we may have to do the worst part of it again. We are just sick about it. We ask for prayers for Simon for this to help Marrianas cells in him to multiply and for Marriana that she does not have to go through this again. This is not a good thing for anyone to go through let alone a little, very happy go lucky, beautiful baby. God Bless to everyone and please keep us in your prayers.

May 01, 2006 at 09:08 PM EDT
Today I was on pins and needles all day and sure enough the call came and we were so disappointed and saddened. Marrianas counts are down to 20%. All areas of her counts are down. They told us today that this is as low as they can go and they are stopping the cyclosporine which is an immune suppresant and is helping Simons skin to Not get graft vs. host. They told us if this does nothing, Simon will probably need another transplant. Marriana is so upset too. We said a prayer before bed and asked GOD to help marrianas cells in simon to grow, she said "mom can jesus really do that?" I choked back every tear I had and said "we can only ask baby". Our hearts are breaking again tonight for our children. I honestly don't know how, now knowing what Simon went through and would go through again and Marriana as well, how we will get through it a second time around. Simon was so sick from everything and now he is so alive and full of personality. It makes me sick to think of it all. I have always hated rollercoasters and this one we are on is killing me. I have asked and continue to ask for prayers. Simon goes in on Friday for some IV meds that he needs monthly so he will get that stick and then vntr blood draws. Its going to be a long weekend waiting for the results next monday. We try to be positive and we see Simon doing so well and then we get this news and its so hard to keep hoping and keeping the faith. why we keep asking. why? Please stay with us through this. We need you all and all of your prayers and hope. God Bless. Tracy and David