February 2006 Archives
February 28, 2006 at 05:18 PM EST
MARRIANA'S ALL SET TO HARVEST HER CELLS FOR SIMON TOMORROW
Marriana had her last dose of GCFS today. She has been asking alot of questions about the medicine. "This is the last one right mommy?" Tomorrow is the big day that her cells will be harvested for Simon. She has to be here at 7:30 am and it will be a very long day. Isabel is ready to be by her side, hold her hand and reep the rewards of Marriana's bravery (everything the hospital gives Marriana (toys, treats, dolls etc) Isabel makes sure she gets one too.
Yesterday was a bad day for Simon and for Dave. Simon started to show the affects from the Chemo. He was vomitting, very lifeless, pale and just laid there staring up. It was pretty sad to see him that way. He has just one more day of ATG, which is a specic serum used to targe the "T cells". He has had some reaction to this medicine in the form of accelerated heart rate and poor circulation to his lower extremeities. They have had to give him extra fluids during this infusion which seemed to help him.
Tomorrow is a long, big day. Simon will move to his isolation room and Marriana will be here for the extraction of cells. Please pray hard for Marriana and as we start the Lenten season, please keep Simon and our family in your daily prayers. There is no turning back and we expect this to be a renewal of life for Simon. Go Simon!!! Go Marriana!! God Bless
February 25, 2006 at 03:50 PM EST
DAY SIX OF CHEMO AND DAY ONE OF GCFS FOR MARRIANA
Hello to all of you. I cannot express how touched we are by all the thoughts and prayers we are receiving through this page. It means so very much and forgive us for not responding to each message. They all mean so much to us but time is not something we have right now and we don't know if we will ever be able to thank all of you for your prayers and thoughts. SO please know, it means so very much to us.
It is day 6 of Simons Chemo. He started another type of chemo today so he will get two infusions of different chemos today and this starts the stronger dose. They tell us he will be feeling the affects of it by monday or tuesday with vomiting and the like. Its not going to be an easy week. While all this goes on we are still managing to get him to smile or laugh through the very full and swollen checks that the steroids have given to him. So for that we are thankful. Its going to be a hard week with Marriana starting her GCFS cell growth stimulating shots today. I had to administer it to her today alone since dave is at the hospital. She was less than happy to make it easy on me. I do all I can not to cry along with her. They had to put a little port in her stomach for me to put the injections into so shes not getting poked but the medicine does burn as it goes in. Shes been a trooper but I know it all scares her. Wednesday is her big harvesting day and Thursday Simon will receive her cells. I know Wednesday starts lenten holiday so please pray extra hard for our children that this all works for us.
We appreciate you all our friends and family and I will update you as the days of this go on. IF you wish to be taken off the automatic mailing you can instruct the page that e mails you to do so. Also in addition please check out Simons webpage at Cure4Simon.org. It will have some additional info on NEMO/ED and simons treatment and doctors as we have time to post it. I'm waiting for pictures so I can load them. thanks again. Tracy and David
Today Simon turns 6 months old. We can't believe it. He has been in the hospital for a month and will be there another month or so and then hopefully come home to finish recovering from his transplant. Today the biggest thing has been Simons blood pressure. It has continued to be high but they can't feel his pulse in his groin area and they are getting two different readings on his arm and leg so they ordered a test to look for blood from from the aeorta that runs from the kidneys to the heart. They think it will be ok but also want to make sure he doesn't have blockage. It is day 6 of his chemo and he starts two different chemo infusions tomorrow. We are told that this second type will be stronger and cause him to have more side affects so that is scary. Dave is at the hospital and I brought the girls there today so Marriana could get a little line which ended up going into her stomach so we don't have to poke her the next 4 days with the GCFS stimulator shots but just inject it into this port. She did ok, she is a brave little girl. I pray the medicine doesn't give her any side affects. She will be going in at 6:30 am on Wednesday to have the cells extracted. They said we should plan to be there until about 5 or 6 pm and hopefully they will get enough cells to give to Simon on Thursday. Please continue to pray for him and Marriana and for strengh for all of us.
A Special thank you to Andres Trevino (Dad of Andy who has NEMO and was successfully transplanted in October 2004) for this Awesome Web page.
Well we are on day three of Simons nine day chemo regime. So far he has been ok. We are told we won't really see any side affects until 5-15 days. Its a little scary. We have had a busy day with Simons picc line (where he receives his meds and blood draws) came loose and started coming out so that had to be reinserted and stitched today and then they came to have him see a kidney doctor because his blood pressure has been really high and he had to have an ultrasound on the kidneys today. We hope nothing is wrong there.
Everyday is something new. Something for the unknown and always worrisome. Marriana is still not feeling well with a really bad cough and night time fever. We keep hoping she gets better. She will be coming into the hospital friday for a little line to have the cell stimulating shots put into so she doesn't have to get poked 4 days in a row. So hoping that goes ok and that she breezes through that part of it. A week from today she will be admitted and the cells extracted. Its so close and scary.
Simon's skin still continues to be an issue for him. Its at the end of a cycle right now which has left it very pink, they say its new skin coming in and we pray its the last time the cycle will do its circle and that he will be free of that pain very soon. There are no guarantees and the doctors still think its graft vs host. Simon is the youngest diagnosed with NEMO and the youngest to be transplanted. He is part of the research now going on at the NIH (National Institute of Health)in Washington and his blood slides and skin biopsy have been sent there for further evaluation. Its all so crazy.
We are praying everyday that things start to turn around and go good for Simon so that he will be relieved of the pain and suffering he has had in his short life. Friday he will be 6 months old and we just want to get him home and start the countdown to day 100 when his immune system will be safer, during that time we will have to be very cautious and keep every germ out of our house and away from him. Its going to be a long road.
Keep us in your prayers. Thank you all Tracy and David
February 22, 2006 at 09:21 PM EST
Well we are on day three of Simons nine day chemo regime. So far he has been ok. We are told we won't really see any side affects until 5-15 days. Its a little scary. We have had a busy day with Simons picc line (where he receives his meds and blood draws) came loose and started coming out so that had to be reinserted and stitched today and then they came to have him see a kidney doctor because his blood pressure has been really high and he had to have an ultrasound on the kidneys today. We hope nothing is wrong there.
Everyday is something new. Something for the unknown and always worrisome. Marriana is still not feeling well with a really bad cough and night time fever. We keep hoping she gets better. She will be coming into the hospital friday for a little line to have the cell stimulating shots put into so she doesn't have to get poked 4 days in a row. So hoping that goes ok and that she breezes through that part of it. A week from today she will be admitted and the cells extracted. Its so close and scary.
Simon's skin still continues to be an issue for him. Its at the end of a cycle right now which has left it very pink, they say its new skin coming in and we pray its the last time the cycle will do its circle and that he will be free of that pain very soon. There are no guarantees and the doctors still think its graft vs host. Simon is the youngest diagnosed with NEMO and the youngest to be transplanted. He is part of the research now going on at the NIH (National Institute of Health)in Washington and his blood slides and skin biopsy have been sent there for further evaluation. Its all so crazy.
We are praying everyday that things start to turn around and go good for Simon so that he will be relieved of the pain and suffering he has had in his short life. Friday he will be 6 months old and we just want to get him home and start the countdown to day 100 when his immune system will be safer, during that time we will have to be very cautious and keep every germ out of our house and away from him. Its going to be a long road.
Keep us in your prayers. Thank you all Tracy and David
February 17, 2006 at 10:00 PM EST
Well I'm sorry I have not updated in a few days, I woke up at the hospital Thursday morning throwing up and had to leave, Dave has been there ever since. The girls are both sick as well so I am trying to nurse us all back to health while David holds down the fort at the hospital. My eyes well with tears for all the many messages we are receiving of love and hope and prayers, thank you all SO much, we cannot tell you what it means to us.
Simon has been doing okay. His skin is doing better and he is eating more by mouth and also smiling a bit more so that is good. Simon will start Chemo on Monday. My heart is heavy with what we will have to watch him go through with side affects and pain. I pray that he will sleep through most of it and wake up a new baby with Marrianas cells. Marr has been brave and when I talk to her about it she seems ok but I know with the first visit a week from saturday to get her first shot that will be hard and doing it daily thereafter after the first one getting her into the hospital for the shot will be rough, as she is scared. Please continue to pray for Simon and Marriana and give Dave, Isabel and I strength to get through this and be supportive. Give us all strength to come out on top with this disease. Thank you all so much. We love you all and welcome your support. God Be With Us. Tracy and David & Family
Well I'm sorry I have not updated in a few days, I woke up at the hospital Thursday morning throwing up and had to leave, Dave has been there ever since. The girls are both sick as well so I am trying to nurse us all back to health while David holds down the fort at the hospital. My eyes well with tears for all the many messages we are receiving of love and hope and prayers, thank you all SO much, we cannot tell you what it means to us.
Simon has been doing okay. His skin is doing better and he is eating more by mouth and also smiling a bit more so that is good. Simon will start Chemo on Monday. My heart is heavy with what we will have to watch him go through with side affects and pain. I pray that he will sleep through most of it and wake up a new baby with Marrianas cells. Marr has been brave and when I talk to her about it she seems ok but I know with the first visit a week from saturday to get her first shot that will be hard and doing it daily thereafter after the first one getting her into the hospital for the shot will be rough, as she is scared. Please continue to pray for Simon and Marriana and give Dave, Isabel and I strength to get through this and be supportive. Give us all strength to come out on top with this disease. Thank you all so much. We love you all and welcome your support. God Be With Us. Tracy and David & Family
February 14 Happy Valentines Day to you all. Last night and today have been especially rough for me. Dave and I switched last night and its always hard to come back here after being home for a day or two. Simon had a rough night and is suffering again today with his skin swelling up and red and itching him like crazy. I feared they would delay the transplant again but we are moving forward at this point, no matter what the skin does. Marriana had to come in yesterday for her blood work. At least twelve viles were taken from her to test for everything so she is not infected and can donate to Simon. It was hard on us all. Isabel sat holding her hand while she sat on my lap and let us know how scared she was. It was hard to be strong when she kept saying "mommy no don't let them do that". This is all so heartbreaking and we have a long haul to go. Simon is going to be going through Chemo starting monday for 8-9 days and then Marriana will start her GCFS shots a week from this saturday to stimulate her white cell count so that can be extracted from her the following wed. This is going to be a rough few weeks and we welcome extra prayers to ask that Marriana get through this without too much fear but also that she can be strong and brave and not have any side affects whatsoever. We also ask that you pray for Simon so that he will accept Marrianas cells and show significant signs of improvement in his skin and get a new immune system. Our goal is to be home soon and looking for that 100 day post transplant to celebrate. Thank you for all your support. love tracy and david
Thank you to those of you who have sent messages of hope and prayer back to us. It means so much to have the love and support of our friends, family and extended family we are finding throughout this difficult time. I am glad the care page is helpful.
For an update on Simon as of today...My morning started with physical therapy for little simmy (marriana and Isabel call him that). He did well although his skin is not looking better today and he seems to be in a bit more pain than he has been I pray that it will soon be healed. We are getting mixed reactions from the doctors as to if they think the transplant will help his skin. They say the chemo might help his skin because its purpose is to destroy all of simons cells so he can accept marrianas new cells. With our only option being the transplant we pray for that. Next week will be alot of waiting for Simon to get better while we do blood workup on Marriana and by next Monday the 20th they will be starting Chemotherapy on Simon (as long as he stays stable or better until then, for that we pray)to prep him for the transplant. I will be up here most of the week after going home tonight to spend time with our girls so I will be updating this as things go on.
We thank you all for your support and prayers and keep saying them, they must be heard. All our Love Tracy and David Gutierrez
February 08, 2006 at 02:36 PM EST
February 14 Happy Valentines Day to you all. Last night and today have been especially rough for me. Dave and I switched last night and its always hard to come back here after being home for a day or two. Simon had a rough night and is suffering again today with his skin swelling up and red and itching him like crazy. I feared they would delay the transplant again but we are moving forward at this point, no matter what the skin does. Marriana had to come in yesterday for her blood work. At least twelve viles were taken from her to test for everything so she is not infected and can donate to Simon. It was hard on us all. Isabel sat holding her hand while she sat on my lap and let us know how scared she was. It was hard to be strong when she kept saying "mommy no don't let them do that". This is all so heartbreaking and we have a long haul to go. Simon is going to be going through Chemo starting monday for 8-9 days and then Marriana will start her GCFS shots a week from this saturday to stimulate her white cell count so that can be extracted from her the following wed. This is going to be a rough few weeks and we welcome extra prayers to ask that Marriana get through this without too much fear but also that she can be strong and brave and not have any side affects whatsoever. We also ask that you pray for Simon so that he will accept Marrianas cells and show significant signs of improvement in his skin and get a new immune system. Our goal is to be home soon and looking for that 100 day post transplant to celebrate. Thank you for all your support. love tracy and david
Thank you to those of you who have sent messages of hope and prayer back to us. It means so much to have the love and support of our friends, family and extended family we are finding throughout this difficult time. I am glad the care page is helpful.
For an update on Simon as of today...My morning started with physical therapy for little simmy (marriana and Isabel call him that). He did well although his skin is not looking better today and he seems to be in a bit more pain than he has been I pray that it will soon be healed. We are getting mixed reactions from the doctors as to if they think the transplant will help his skin. They say the chemo might help his skin because its purpose is to destroy all of simons cells so he can accept marrianas new cells. With our only option being the transplant we pray for that. Next week will be alot of waiting for Simon to get better while we do blood workup on Marriana and by next Monday the 20th they will be starting Chemotherapy on Simon (as long as he stays stable or better until then, for that we pray)to prep him for the transplant. I will be up here most of the week after going home tonight to spend time with our girls so I will be updating this as things go on.
We thank you all for your support and prayers and keep saying them, they must be heard. All our Love Tracy and David Gutierrez
