November 2006 Archives

The God who spoke still speaks..The God who came still comes. He comes into your world. He comes to do what you can't. When I read this today I thought, hmmm that is so true and God is here with us and will help us get through this and help us heal Simon and give him this immune system he needs to be a normal healthy boy. God is with us, I feel his presence and I feel the love that surrounds us. Thanks to those who have touched us and reached out especially in these last couple of days. It has meant so much to feel your presence there with us. So Thank you from our hearts.

Tomorrow starts a couple of tough days with Marriana having her long days of harvesting and Simon gets his last does of chemo. Hes done okay with things, vomitting a bit, tired but otherwise, trying to be a 15 month old boy of craziness and smiles. Dave and I will be at the hospital round the clock and do our best to be at two bedsides at once. Isabel gets to go out to dinner with Grandma and Grandpa and Marr and I have a large selection of books picked out for the evening rest period and we might even indulge in a movie. If I didn't know better I would feel like we were getting a girls pajama party night. So with all of this going on this week we ask that you find your God within your heart and life and ask him to come to our aid and help us to be strong, help us to prevail and make the right decisions and do all that can be done to get us 100% donor cells with as few complications as possible. All we ask is to be home again, with a healthy family, doing the daily grind that wears us down at times but now seems so appealing. Please pray and help us to get back to that. I watch families all around us now, friends, neighbors, strangers and think how much I envy them. Envy their time together without worry of illness and I long for that more than anything to be a part of our lives once more. Three weeks is our goal to be home. Lets pray we make it with unbelievable news of 100% working donor cells in Simon that have the stamina to outlast any energizer you could find. We fill our hearts with hope, we fill our life with love for there is no love like that of child. Marriana is giving from her heart even though her fear is greater than her knowledge of what is really happening. The girls love simmy. He lights up when they come to visit and it will be hard for them not to see each other but with the outcome ahead to be positive and strong we will wait out those weeks. Think of us in prayer and enjoy your week. We'll check in in a few days when things will hopefully just be waiting for cell counts to come back and nothing more exciting. God Bless. Love Tracy and David

Day 2 of Chemo here and things are going well. Simon will really not feel the effects of chemo until the infusions are done and that will be his last dose given on Monday. The side affects are an after affect. Marriana started her shots and is not all too willing to let you do them. Dave has been home with her so he is feeling the sadness this time giving them to her. She has 2 more doses and then is admitted Monday to undergo her very long first day of harvesting only to get up Tuesday and have it done again. They are 10 hour days and last time she sat still trying not to move her head the whole time. My heart breaks for those two days to come. She is a trooper but you hate to ask her to do it, yet again. The girls and Dave stayed home today, such a beautiful day outside I asked him to take the day and just have fun with the girls. Simon and I both slept well last night (thank you tylenol PM) and he is taking a good nap. He is in good spirits and fliriting and chatting it up with all the nurses. Hes such a joy. Hope you all had a beautiful Thanksgiving. Our goal is to be home for Christmas. Say some strong prayers for zilch complications and strong 100% donor cells to come. Simon receives Marrs cells on Tuesday and will be in isolation starting then. He enjoyed a visit from his aunt nene today. Always nice to break up the day with a visit. Enjoy the awesome weather. God Bless and Keep asking for miracles to be sent our way. To our good friends in Cincini - GO JACOB, GO SIMON, GO JACK and God Bless RHYS. Love Tracy and David

We're Home. We were given a 48 hour pass to come home and must return on Wednesday for a PICC line for Simon and subcutaneous port for Marriana. The nurses thought it would be good for us to get home and be together for a couple of days. Simons infection is clearing up and Dave is administering IV meds at home. Yes maybe he missed his calling, I did not. I'm watching but I don't care to do IV meds. I think in a few months simon won't need any needles for medicine. We start Chemotherapy on Thanksgiving day so when you all are gathered around your dinner tables with family please say a hearty prayer out loud for our family. And eat lots of turkey of course.

Today we decided to decorate the house and put up our Christmas tree. It is the only time all of us will be home together until after Simons counts come back. So sorry to my neighbors but you will see lights tonight in our house even though the rules state no christmas decorations before Thanksgiving.

Enjoy your families no matter where you have to go or how inconvenient it may seem to you, you get to be with family and that is what matters, especially on Thanksgiving. So Enjoy them. Love to you all. Love Tracy and David

Hello everyone. I just finished my work and the girls are playing blues clues on the computer so I thought I'd write early and try to get to bed or watch a show tonight. Its saturday and Dave spent the night last night as I had a local theatre trip with the girls to see Cinderella. They loved it and I enjoyed it very much as well. So, Simon is getting better. His infection did not grow out anything from his port line from the blood draw yesterday so lets pray todays, tomorrows and beyond keep coming back negative. The g-tube site is still icky (I don't know what else to say) but Dave says it is getting better. I cleaned it, with alot of screaming from Simon, pretty good yesterday. Its so hard to be home without them and to have Dave sit there alone all day. I feel so guilty. The girls are wiped and we thought it would be good not to bring them down there again today. I plan to get there by noon for the game with snaks and food and enjoy a day with my family. Simon will not be in isolation until the 29th I believe so healthy visitors can come until then if your in the neighborhood. Have a good night and keep up the prayers. We need them for our long haul. God Bless. Tracy

Well I'm back to blogging from the inside of Childrens Memorial. Before we left the house today to bring Marriana in to get her port and start her GCFS I said to Dave I better pack Simon and myself a bag because we both knew his g-tube infection was not getting better and the only thing to do was start iv meds. Well that is exactly what happened. Along with this we are told we will be postponed a week. Simons chemo and Marrs shots are going to have to wait. I knew the infection was getting worse and the calls and trips down here and the meds just didn't help so before we deplete his immune system more, we have to get rid of the infection or face the risk of having more complications and losing him during transplant. That, for us, is not an option. So we sit and wait for the meds to kick in. It sucks but it has to happen.

The girls had a great day here today. Ms. Heidi took them to the playroom for arts, crafts and playtime. They received 2 new books each and then at 2 pm they had a pajama party sponsored by The Childrens Place. The kids all got wintery pjs and a new backpack and book. We layed in sleeping bags and listened to stories. The only good thing about Simon not starting chemo is that we all can still be in his room. So for the next 7-10 days this is where we will hang out. Dave had his last day of work until we get through this so we can switch off every 2-3 days and get rest at home. It still is hard on us not to be together and to be alone here as things come up. We also requested and were granted a cot in this room. That is a no no up here but this is a big room and they let us before so for now, we don't have to sleep on a chair bed.

We were blessed to have the special prayers done here at the hospital as Roger and Betty came down special to see us and to bless Simon and Marriana. Thank you for doing that. Simon was his charming and giggling and happy self. The girls were getting a bit wired and running around and he was screaching and playing right with them. He is amazing.

Okay, well that is the update. Please pray the infections leaves soon and that this is our only stumbling block for this transplant. We need for things to go smoothly and for the donors cells to be 100%. God Bless you all and thank you for reading and for caring. Love Tracy and David

Its been a few crazy days as we count down to our long stay at childrens again. Simons g-tube infection is really not getting any better and I took him in yesterday to see what we should do. We are still in a holding pattern to see if transplant will start on Friday. As of now I think we are going ahead. Simons stomach is bothering him and very tender around the g-tube as well as red and inflammed. I am starting topical cream today to see if it makes a difference. Seems he does so much better if we just leave him alone. Since the port was put in on October 19th we have had nothing but issues with his skin and now that we cannot use vancomician, it brings up a very serious issue as to what to do if he gets an infection during transplant. Everyone is concerned. Simon continues to be his typical laughing and crazy self with his sisters and his mom and dad. We pray his good nature brings us all through this round. Tomorrow I bring Marriana in for her subcutaneous port and start gcfs providing the "team" thinks it will be ok. Infections of any kind are very serious during transplant b/c he will have NO immune system functioning or not.

Tonight I am making turkey dinner and we will sit down and have a nice family meal and tell each other what we are thankful for. I know I am thankful for the love and support I find with David everyday and the smiles on my kids faces and how they manage to adjust to every situation no matter how hard it is on them. I'm also thankful for the many friends and family and strangers that have offered to and done something to help us through all of this. Thank you so much. We cannot tell you what it means to us. I know the fundraising has begun for our family and from our hearts thank you all who have contributed to get us through the next few months. It is a tremendous gift that you are helping our family through this most difficult time and David and I are so very humbled and thankful for it all. God Bless you all. Tomorrow night the Decon who baptised Simon and his wife are coming to offer special prayers to Simon, Marriana and our whole family. That will be a very special prayer to us. Please pray that all goes as planned and that Simon has an easier time this round without infection. Thank you all so much. I will post as things progress. Love to you all. Tracy and David Please also pray for Jacob and Jack as they deal with the NEMO issues as well.....A stranger said to me the other day "No Hill is too High for a Climber" We will take that with us and trudge onward and upward until we prevail. Thank you for that thought.

Dave and I cannot tell you the love and support we feel from everyone. It helps so much to have that here. We were honored to be guests of the pediatric oncology treasure chest fundraiser tonight. It was such a great event and the turnout was tremendous. Our riend Sue and all the committee members did such a great job and it showed tonight. So many people put their hearts into things like this to help families experiencing such a shock to their families and feel the relief when people do what they can to help. Dave and I actually got out for a few hours while Bob and Terri (grandma and grandpa) stayed with the kids and let us have some much needed time together. We were able to talk and dance and have a nice, much needed time together. We are both exhausted and looking to next week when all things will come to be transplant number 2. Dave is woking all weekend and all next week and then he will be off for the duration of the transplant. We decided this time, we needed him to be home since we did not have anyone who could stay week long stays with the girls, and we didn't think it would be good for them to be without us and I physically and emotionally cannot bear 5 straight days alone at the hospital week after week. So this is what it is for our family. We will be in financial distress but our family and emotional well being need to come first. Simon is battling hives and irritation by the meds he is on for his not so quickly healing g-tube infection and we are told it will not hold up our transplant plans so next thursday Marriana goes in for gcfs subcutaneous port placement and to start shots and simon will be admitted on friday the 17th. WE will not be in isolation until the 22nd when simon receives his cells from marr. Marriana, Simon and I will spend the night on the 21st and Mar will be reharvested on the 22nd before giving simon fresh cells. Please pray all goes well. WE know there are so many of you praying for our family and our hearts well with joy to know you are there. Thank you so very much. So many families are dealing with such heartache and I pray that there is a solution to all of this and it comes to help us all so the suffering can end. God Bless you all. Love Tracy and David. Marge, Sue, Jean,Pam and everyone who showed such love to us tonight, such great hugs tonight, thank you. David and I talked so much on the way home how we have been so blessed to have been welcomed into your large families for so many years and feel fortunate to have you with us for the years of joy to come. God Bless.

WEll I had to drop a quick note to let you all know we are home and Simon is resting. He tolerated the 2nd and 3rd day of campath much better due to getting premedicated with hydrocordisone and atarax. This helped with his hives to slow them down. The infusions ended up running for 5 hours, more than double what they started but we are home and he is a crazy, little tired man. He slept well last night with the exception of having some trouble with his G-tube. When I got up to give him midnight meds his crib was soaking wet with night feeds. So again this morning. I am waiting to hear if I have to head back down to childrens for the G-tube to be fixed now. Never a dull moment. We hope to stay home until the 17th when Marriana gets her little port and starts the GCFS and Simon gets admitted. Pray for no fevers or infections in these two weeks for Simon. We are doing our best to keep him healthy while his body gets targeted to lose any immune system he has. God Bless you all. Thanks for the prayers keep them coming. I have to mention this weekend while it wasn't a time of happiness for us it was made alot easier by Simons amazing nurses, Devon and Bridgett. They made a very scary time much more bearable and were on top of every little thing that came up. Thank you both so much. I have to thank Devon for dancing after the campath was finished. She started to and Simon and I both joined in. It was a lovely way to end a grueling weekend. Love Tracy and David

Campath proves to be a hard drug for Simon to take. We finally got things going around 4pm yesterday and about 1/2 hour into the campath infusion Simon started vomitting. He was very irritable through the whole 2+ hour infusion and ended up spiking a fever around 9pm. He developed hives as well. He was put on different antibiotics for the hives and the fever. Since it is a weekend the doctor comes to see him once and is gone. Things apparently come up with this campath and it can be very scary. Dave and are felt fortunate to both be there together as Simon was not his self and very very aggitated. He finally went to sleep around 9:45 pm. He was exhausted. He is back to hating having his blood pressure taken when they do every 15 minutes through these infusions and beyond and he was not happy. Its proving to be harder this time already because Simon is older and he will let you know when he is unhappy. He is also hooked up to several lines for various fluids and medicines and he is rolling all over in frustration and its hard to keep him untangled. Today is day two of campath. Since Simon is not eating and is vomitting I worry for his weight which we just got up and he was just starting to really enjoy food. Its a little more than we expected. With the chemo (campath is an antigen that targets specific cells and can be pretty taxing on your body) the side affects are delayed. With campath its immediate. His poor skin is still trying to heal from the vancomicin he received last week and now we have hives to deal with. We can't catch a break. We are very thankful that the girls are with my sister for the weekend. It allows us to focus on Simon and to be there just for each other. Yesterday I had my doubts about our decision and his nurse, Devon, who has been with us since the beginning, said "mom we need to focus on the big picture and that is getting him the immune system he needs. Two more doses of this, you can do it." All Simons nurses love and take good care of him and that helps us also. Well I have to run. Simon needs more shirts and Dave needs me to be by his side. This is not any easier this time around. PLEASE pray for him this weekend. Ask God to have mercy and let Simon get through this a little easier than he did the last round. God Bless you all. Love Tracy and Dave