October 2006 Archives

Yesterday was the beginning of transplant number 2. Simon and Dave had to be at the hospital at 7:30 am for the series of tests Simon needed to make sure all systems are working and there are no problems. He had x-rays, bloodwork, hearing tests (yes chemo affects the hearing) and Marriana had to go in for her bloodwork too. They test them from every virus known cmv, hiv and make sure they are both healthy and okay to give and receive. Marriana was very anxious and worried. She was screaming "No mommy don't let them do it". They put numbing cream on her arm and when they did poke her, she didn't even flinch so I know it was all anxiety and fear of what would happen. My heart breaks to think about the two days of harvesting her. But overall they both did really well. We wait now until next weekend when Simon is admitted to start his first 3 days of Chemo. He will then come home for 2 weeks and be admitted on the 17th until he is 100% donor cells and can come home. Marriana starts her shots on the 17th as well and will be harvested on the 21st and 22nd. Simon will receive her cells the day before Thanksgiving. So, please keep us in your prayers. I will try to keep everyone posted as to how things are progressing. God Bless you all. Love Tracy and David

Today the central venus port went in beautifully. Simon handled it really well and after about 20 minutes of being crabby after anestisia he was back to his old self. He even blew a kiss to a nurse he had never met before. He was laughing and just showing us the true, strong Simon. He is wiped out this evening but he came home was all over the house, fighting Marriana for her box of crayons and showing the girls he plans to be King (sorry Dad) of the house. It was so good to hear the laughter fill the house. I remember listening to that on the other end of the phone before we had kids when I would talk to my sister and think, God I can't wait to have those little voices in my house too. Now I just can't stop smiling when they giggle uncontrollably.

We met briefly with Dr. Duerst and we have a schedule. It stinks only because we will be in the hospital for Thanksgiving and possibly Christmas. We did not want to wait until January as too many things could happen so we begin with workup on both Marriana and Simon next thursday. After that we get a week break and then Simon starts Chemo and Marriana starts GCFS on the 17th. So things are going to move along quickly again. Seems we just get thrown into things and they happen so quickly. Better that way for me anyway. I don't like to wait around. So just wanted to let you all know. Hopefully Simon will continue to be a crazy kid and strength will come for us all. I need to say HOORAY to Cynthia. She is on the road to living life again. I'm so happy to be able to say that. And Yeah for Jack who is home and doing much better. I would like to ask you to keep our friend Jacob in your prayers as well as he and Simon will be in transplant at the same time. Strength comes in numbers right??? God Bless. Listen and smile at the laughter. Tracy and David

Hi everyone. Just a quick note to let you know we are going in for the central port surgery in the morning. Simon skin is doing better so we think it will be fine to put the port in. Please pray he gets through it easily and heals quickly. He will have to have pre-transplant testing done starting with bloodwork tomorrow and chest x-rays and scans for organs and things like that along with Marrianas blood work over the next week or so. After that its back in for chemo and more of Marrianas powerful cells. This time they must stick. Dave and I read some pretty scary research papers on this treatment last night and ask for extra prayers that Simon shows us how strong a fighter he is. He is really starting to come into his own personality and eating better so this will be hard to endure again. God Bless you all. Enjoy a family evening inside your dry, warm home and hug those you love. Tracy and David

Yesterday Dave and I celebrated our 16th year Wedding Anniversary. We spent it in a meeting with our stem cell team at Childrens. We sorda knew what to expect but hearing the words just really threw me. They are proposing we re-transplant Simon. They, and we in our hearts agree, that the DLI infusions will not be enough for Marrianas cells to take over. We are so saddened by this and know this time what we are in for so it makes it somewhat harder to venture back into the hospital. We will be starting with putting a central port into Simons chest as early as next week so it may have a week or two to heal before starting campath, a drug that will help to eliminate Simons cells beyond what is in his blood stream. He will have that for 3 days outpatient and then we will be admitted to the BMT unit. Prior to that he and Marriana will have to undergo bloodwork for the transplant and Marriana will be getting the GCFS (growth stimulating) shots again. Simon will have chest x-rays and other tests that will check him to make sure his little body can withstand the drugs again. We have decided to harvest Marriana for two days so that we may have extra to freeze in case Simon needs a boost during this process. That means she will be admitted to the hospital for one night. I have not told the girls yet. My heart was crumbling last night and it was all I could do to get through dinner and bed time. Dave and I are scared. There are always possiblities that things can happen along the way and that is why the drs have chosen a little more aggressive approach this time but not the full blown procedure because they don't want to lose Simon. I never think of him not making it but I have to tell you when you hear a dr. say its a possibility, it rips you in half.

We are optimistic. We think this will be what needs to be done to have Simons immune system functioning and he can move forward to a healthy life. Dave and I are planning to get things done and have this going right after Halloween, the girls are so looking forward to dressing up and trick or treating. Dave and I have decided he needs to take some time off of work this time. We just don't have anyone to consistently stay with the girls and honestly I can't be at the hospital 24 hours every day this time. My strength has to be in numbers this time around. I'm not sure how we'll do it but right now all we care about are our kids and getting us all through this both physically and mentally. We will be in transplant the same time our friends, the Browns, will be in Cincinnati going through the same procedure with their 3 year old son so please keep us all in your prayers. Please give our doctors the knowledge to get us safely through this and thank God we have found a group of doctors who care so much about Simon. God Bless you all. Love David and Tracy

Just a quick update to let you all know what is going on. Simons vntrs were down again this week. Since they keep declining we know another transplant is going to happen. We are meeting with the doctors Thursday to discuss our options. We, at the very least will still have to give Simon more of Marrianas cells which means she will be harvested again. This is a very hard decision for us and heartbreaking to have to go through it all again. Marriana knows and asked me if we could freeze the cells inside Simon so they couldn't get out this time. So insightful and sad at the same time. We pray to God whatever we decide to do, Simon continues to show us his strength and we get a much better % to keep him healthy and live a normal life. Please pray hard for us today. I can't take Simon to church so I pray at home and I ask that all of you do that for us whether you are in church or temple we need your help. God Bless. Love Tracy and Dave

Just a quick update to let you all know what is going on. Simons vntrs were down again this week. Since they keep declining we know another transplant is going to happen. We are meeting with the doctors Thursday to discuss our options. We, at the very least will still have to give Simon more of Marrianas cells which means she will be harvested again. This is a very hard decision for us and heartbreaking to have to go through it all again. Marriana knows and asked me if we could freeze the cells inside Simon so they couldn't get out this time. So insightful and sad at the same time. We pray to God whatever we decide to do, Simon continues to show us his strength and we get a much better % to keep him healthy and live a normal life. Please pray hard for us today. I can't take Simon to church so I pray at home and I ask that all of you do that for us whether you are in church or temple we need your help. God Bless. Love Tracy and Dave