April 2006 Archives
April 25, 2006 at 03:49 PM EDT
Whew - Today we breathe. Just back from the ASCU where they told us Simons counts went up 10. We are up to 32% this week overall. His T-cells up to 68% Marrs so we are taking this as a good day and smiling in its presence. They are going to start slowly tapering the steroid starting with tonights dose. We are happy about this but nervously concerned because the steroids are helping Simons skin as well as his digestive system. We know he will be on some of the meds for a good year to prevent him from getting certain infections. He is extremely happy and having fun. We received visits from three of his favorite nurses in the ASCU clinic today and it brought a big smile to Simons face as well as mine. We continue to pray and hope that things will progress upward from here on out. We live on hope and prayer and are taking the good days when they are here. Lita is here today so we are going to have a nice dinner and pretend everything is normal. Simon is saying da, da, da all the time and Dave seems to think hes really asking for him, men are so naive. ha ha. Well we get vntr draws again on Friday so the anxiety goes on but the hope prevails. God Bless you all. Take care and enjoy your family and friends. That is something I miss more than anything. Not being able to just see those you love and miss and share your special baby with everyone. This page helps me to do that some at least. Take care and keep the prayers coming for our family. Thanks. Tracy and David
April 21, 2006 at 10:14 PM EDT
Its been a very disappointing day for us today. Simons counts came back and his overall of Marrianas cells is only 23%. I flipped when they told me today. He has been doing so good I don't understand. This is 50% less than they were last week. We are beside ourselves with disbelief. It was a busy and stressful day taking all 3 kids to the hospital by myself and the girls were just wired. Simon had to get pokes for more vntr draws today and I was not expecting that. They couldn't get his vein so he got poked more than once. He seemed so poopie today. I had an appt myself so Dave met me at a gas station and we swapped kids so I wouldn't be late and met back at home for pizza. I feel so bad b/c the girls are being put aside while Dave and I try to figure out what to do next. The drs. want to see what these counts come back on tuesday and then they will make a decision based on those numbers. They have gone nowhere but down and it seems no matter how much we all pray the numbers keep going down. I talked to Marr today about maybe having to get harvested again. It broke my heart to even have to put it out there and she said she didn't want to because she was already brave for Simon. My heart breaks for her and for Simon and I don't know what to do but to try and believe this has to work. We dropped bakery cookies and a thank you note off to the nurses on 4West today with the hope we would never return.
Simon laughs and makes us smile so much and he gives me the most amazing hugs. I just want to eat him up. God be with him for this all to be over soon. I kept looking to June 8th (simons 100th day) and now I"m scared we might spend time of the summer back at square one. I pray and pray and pray. What else can we do. Our friend Jack who is being transplanted at CHOP is also having difficulty and has to have his transplant redone. God be with these boys and please keep them in your prayers and pray often and hard. Look around you today, you can't imagine the blessing that are right there in front of you. The freedom to visit friends, family. To go to the store, zoo, parties, parks anywhere even the grocery store without having to worry about anything. Its impossible not to even imagine not being able to do that. I have been trying to find things to do with the girls around the house because we cannot go anywhere even to run errands until Dave gets home from work and can stay with Simon. Its a bit tough some times, way better than being in the hospital and I"m not complaining but just not a normal way to the everyday. Well my friends, I'm exhausted so have a good night and a blessed weekend. Love Tracy and David
April 17, 2006 at 05:06 PM EDT
We have been home almost a week and I have to say things are going relatively well. Simon has gotton a pretty good appetite due to the steroids he is on and we can only hope it continues once they start to taper him off of them. He is not sure about food but mom keeps pushing baby food and ceral in addition to the formula. We are going to clinic again tomorrow for blood draws and vntrs in the hope that stopping the cellcept made a difference in Marrianas counts being up. We pray for that. Simon has had a terrible time sleeping and is keeping us up pretty much for hours every night, still in all I am thankful to be exhausted at home rather than sitting in the same condition at the hospital. We had a blessed and wonderful Easter at home alone as Simon cannot be around people and we felt so fortunate to be here. Its truly a blessing. We continue to pray and ask for your prayers to strengthen our request to God. Thank you all so much for everything and we will keep you updated. We should get the vntrs back on Friday so I will let you all know how it goes. The girls are so happy to have us all home, I hope we all stay here. God Bless and take care, Tracy and David I'll continue to post new photos check them out. :)
April 13, 2006 at 10:06 PM EDT
Well I wanted to update this quickly to let you all know that so far being home has gone okay. I'm sad to say that the vntrs came back this week slightly down from last week with an overall of 44%. They decided to stop one of the immune suppresants (that puts us down to only 8 meds a day) to see if that helps marrs cells do a better job. We pray that it helps. Unfortunately Simons skin has started to get his usual redness again which for us means that the cycle is starting over and he will get red and start to peel and be extremely dry. That always makes us sad. On a good note, he is eating some food, baby ceral and baby food. Its sparatic but at least hes trying it. Since he was put back on the steroids his appetite has picked up. We are still giving him 16 hours of ng feeds (the feedings through his nose) which get us up every 4 hours to fill the bag. During the 4 hours Simon seems to not be sleeping too well anyway so one of us is usally up anyway. Still all in all its better to be awake all night in our own bed together than trying to sleep on a hospital chair and waking up with a very sore back. The girls are loving having us all home and we've been busy playing candyland, chutes and ladders, winnie the pooh uno and alot of time outside.
Well we have a 8:30 am clinic appointment at the ASCU (stem cell clinic) tomorrow and I have about 2-3 hours of work to do still so look for some new photos and updates to be posted maybe tomorrow. Thank you all for the prayers, keep them coming and for the meals and care packages. They have and continue to help so much. God Bless you all. Sleep tight. Love Tracy and David
April 11, 2006 at 10:31 AM EDT
THE DAY HAS ARRIVED.....
Well today we are getting ready to head home. Simon is getting a bath and all lubed up and, of course, a cute outfit to exit the hospital that we hope to never spend another night in. I will keep you all updated as we will be back for clinic a few times a week and the vntrs are due back tomorrow. Pray they are much better than last weeks were and that Marrs cells are prevailing. Thank you for your support and when I get the energy I will be updating his web page Cure4Simon.org. God Bless and keep praying for Simon he is not out of the woods by a long shot. Thank you all so much. Love Tracy and David.
April 09, 2006 at 11:01 PM EDT
Dave and I have switched spots again and I write the update from the hospital tonight. After having Merry Maids of Oak Park on North Avenue come to my house and basically leave without doing the cleaning (so if you ever are thinking about hiring them - DON'T)they left me scrambling to figure out what to do with a whole house to get cleaned in a day, I have to extend the most sincere thanks to my sister Denise, Daves sister Rose, Daves mom, our niece Dee and our friend Amanda for stepping up and coming to clean my entire house all day on Sunday. They came on short notice, gave up a beautful sunny day that they could have spent doing something wonderful with their families to lend a hand and clean my house from top to bottom so Simon could come home. So from the bottom of our hearts, THANK YOU, THANK YOU, THANK YOU. After everyone left the girls and I headed to the hospital, spent some time with Simon, enjoyed McDonalds and a mcflurry (in simons room) before the girls headed home with Dad and made a quick stop to see the Navy Pier ferris Wheel all lite up at night (Daves such an awesome dad) and home to tuck the girls in so he could begin hanging new blinds, cleaning the carpets and washing our ceiling fan that I could not reach. Its been a very busy weekend and even though the VNTR numbers were not what we wanted we are all on cloud 9 anticipating being together under one roof in another day and all of us could not be more excited. Marriana keeps saying "when is it tuesday mom? is it the day after tomorrow that we'll all be home together?" I love them so much and they have been amazing through all of this. I pray for higher counts this week. They will draw another set of VNTRS tomorrow, a few days early, to decide if they will need to cut one of the immune suppresent drugs to help Marrianas cells get a boost. Since Simons picc line was removed on Friday due to infection, he will be getting poked for all blood draws and IV meds (once or twice a month for the meds) every time we come into clinc which I think will be twice a week. Whatever needs to happen we pray that it helps b/c we cannot go through this again. Simon is chatting it up right now and I long for him to have some sort of schedule. Through it all he smiles and googles and laughs. I could learn alot from him. God Bless you All. Keep the prayers in our corner and God Bless all the kids here at Childrens, its not an easy place to spend time. I hope never to be back here. Thank you all for the cells dance participation, we are far from being done with it. Love Tracy and David
April 08, 2006 at 10:30 AM EDT
Yesterday was a near perfect day. The girls and I ran all over town trying to get things we need to prepare the house for Simons homecoming and stopped at Portillos for lunch. We goofed around and had so much fun and for the first time in almost 6 months I felt so free, so happy and hopeful. We organized alot of things and are waiting for the cleaning crew to come and scub the house so Simon can come home. It comes with alot of anxiety about caring for him when he gets here but also with alot of excitement that we will all be together again. Simon has been doing great too. Dave had a good day with him with alot of smiles and laughter and play time. They are going to slow his ng feeds down to try and let his stomach get empty so we can see if he will eat by mouth some. It all seems to be tapering too fast. I have prescriptions to get filled (11 in all I think) and things left to get done here.
This morning we were told the VNTRS are down. We are so disappointed. His germ eating cells have dropped to 33% down from 52%. His overall is down to 47% down from 59%. This has put a pin hole in our excitement and fear that if it doesn't work we will be back at this all over again. Its amazing how you can feel so elated one minute and so deflated the next. We ask that you pray and pray hard for Simon that his counts come up and Marrianas cells start to work their magic. This is the negative side to having a mini chemo treatment. Some of Simons cells were always there and now Marrianas have to fight to take over. It makes me so sad to hear this news. I pray that we still get to take him home and that he continues to get better. Dave said this morning his skin is even more dry than ever and no matter how much lotion you put on him, it does nothing. Poor Simon he can't have all things going right always a bump in the road.
Please pray for him and give us strength. Love Tracy and David God Bless Us
April 04, 2006 at 11:57 AM EDT
Hello everyone. I wanted to give you a brief update because yesterday and so far today are good days. Simon has been smiling a bit in between his crying fits and seems to be more alert since his blood transfusion. Not having red cells can really poop you out. They told us that they are going to try and get his meds switched over to oral and start to taper off on the methadone in hope that his fontinal will continue to reduce in size and the pressure will be gone from the extra fluid in his spine. We are so ready to be discharged. It doesn't come without concern about bringing him home and keeping his environment safe and germ free especially with the girls being walking germ magnets. We opted not to send them back to preschool this year but they still are catching bugs. Simon will have to be a bit isolated for another 70 days as this is still a crucial period for his immune system. He will be coming home on about 10 meds a day, ng feeds and possible TPN feeds which are done through IV. We are going to be taught how to do and take care of all of this. That will add another "job" to my already hectic life but if it gets him home safely, we will just have to do it and chart it all out. At least we'll be together. He keeps growing cultures out of his picc line and they are trying to avoid having to replace the line again. Its a vicious cycle being in here and having so much medicine put into the picc lines and blood being drawn out everyday.
So with all of this our hope is to get home by early next week. AHHHHH I need to get the cleaning done. So much to do. We do vntr draws again tomorrow so you all know what that means, tonight you must partake in the "Cell Dance" and pray that marrianas cells are more plentiful and Simons are leaving the scene and also if you would pray that all goes well and we make it home next week. Thank you all for your hope and prayers. It means alot to know you care and we are not alone in our hope for Simon. Love Tracy and David
April 01, 2006 at 10:29 PM EST
Hi everyone. I don't even know what to say today except that Dave and I feel so sad. Simon is having another day of irritability and is completely pasty white from the lack of red blood cells in his body. We found out today that his red cells are being eaten up as fast as he is producing them and they are not sure if it is marrianas cells doing it or his cells. This is a potential problem for the transplant. Dave and I struggled today to try and understand it but its not registering with us how this is going to play out. They told us they may need to put him on another immune suppresant if it is in fact marrianas cells doing the attacking. They are giving him a transfusion as I type this, yes at 9 pm and will run until almost 1 am with vitals taken every 15 minutes. Can I say HELLO? he is a 7 month old baby who needs to sleep, why are we starting this so late in the day? someone tell me. Everytime Simon has gotton a transfusion (this will be his 3rd) he has had some flare ups in his skin issues. So I pray that does not happen because his skin looks pretty good right now with the exception of being dry and flaky. We are hoping the red cells give him a boost but it will be a temporary fix to the issues. He also has been testing positive again for gram positive infection for the last couple of days. This puts us up to 5 bumps in the road for this week. I don't even know what else to do at this point. Dave and I can't even think of questions to ask the doctors. Simons head is still puffed up and he is barely holding down any food. It has to get better. Please pray for Simon. Our hearts are breaking and we can't even think of anything beyond this. I took the girls to see Dave for lunch because he felt so lonely and sad. We cry to each other on the phone all the time and feel so helpless. The time away from the hospital was good for him but as we sat at lunch we both said, we feel incomplete sitting there with the girls and guilty to be out eating without Simon. Please, please pray for us for strength and for Simon and the girls so they can feel our love even though we cannot be a true family right now. God Bless you all. Tracy and David
