December 2006 Archives
A quick trip to clinic yesterday for labs and a skin check and we were out of there. Yeah!!!! Simon is doing okay. His skin is trying to clear up and changing everyday. They think it is just the healing process. Hopefully it will continue to resolve. The dermatologist tells us it could take months to totally go away. All studies for the chicken pox and herpes viruses have come back negative so again as Dr. Tse said "Simon is a special child". We already knew that so.....we just try to keep him healthy. He is at day +33 so his bone marrow is still growing. As I type the girls and him are skreaching downstairs. Eating continues to be a challenge. He will take a few bites here and there but we mostly are relying on the tube feedings still. His weight is a little low and I so want to bulk him up. Last night I freaked out b/c I used a different syringe for one of his very important meds and ended up giving him double what he should get and this is a med they check for high levels due to toxicity of the body. I freaked and ended up paging the dr. at 10pm. Luckily he was at the low end of the dosage and Dr. Jacobsohn told me it should be fine. But being a mom I have beat myself up for the stupid mistake ever since. He is playing and being his happy self so hopefully that one time mistake was not too bad. I made Dave draw up meds this morning.
We enjoyed a delayed Christmas celebration and all the kids had a great time and we have been playing games and things since. Hullabaloo for kids is alot of fun if anyone is looking for an active game.
We hope you all have a safe New Year. Be Careful out there. And Peace and Great health to everyone in the 2007. God Bless and keep praying that Simon holds onto Marrianas cells solely and continues to improve. Also a big WELCOME HOME to Jacob in Cincinnati. He is post transplant too. Keep on going strong Jacob. Love Tracy and David
Well a day late but we are coming home today. Simon was given a dose of GCFS (growth stimulating shot) for his white blood count and of course they are up today. They still have not gotton the information back on any of the testing to see if it is the pox or something like it but he is getting his last dose of his IV med at 3 pm and I will be scooping them up and bringing them home. We pray he will be home for the long haul this time. Our perfect world would be to just have to go to clinic 3 times a week and deal with little things that come up through clinic. Please pray for his counts to stabalize and for us to be able to be home, together. We have a rough couple of years ahead of us but if we can get it somewhat normal that would be good. We are sick of the hospital. No offense to all who we love there. Tonight santa will come. I am off to the jewel to stock up so we can hunker down for the next two days and just be. Please pray for things to continue to improve. We also need some solid prayers for Davids brother who is in the hospital and needs your prayers for a full recovery. Please pray for Tom and his family. God bless you all. Love Tracy and David
Merry Christmas! Its amazing to me how you think there is no way you could possibly love someone more than you already do and then they do something to make you realize there is no boundary in the area of love. Today I was watching a movie while Simon napped and having a weepy family future moment when I looked in the antie room and saw the girls and Dave standing there with a completely bald head. I jumped up, opened the door and ran to him like I hadn't seen him in years and wept like a baby. They were tears of joyful sadness but with happiness. I cannot explain it. To see him, and he and Simon look SOOOOOO much alike (see below) (now I see it Devon), it brought so many emotions to me. To think a man has so much love for his child. Dave is an amazing man. He has never ceased to amaze me through all of this and he continues to bring me up and give me energy to soldier onward.
We all hung out at the hospital today and will do so again tomorrow. We have told the girls Santa is coming after Simon comes home as a special trip and I made letters and left them in the girls stocking with candy canes for the morning. We will bring a few gifts we told them Dave and I bought and open them at the hospital and play cards and the new games all day. I plan to cook and bring a ham for us to have there and just enjoy each other and the day.
Simons skin is peeling, alot. But we think its getting better. We are hopeful it will clear and be ok. We had some concerning news today. Simons counts are way down. More than half of what they were 48 hours ago. Its very scary especially to a family who has lost engraftment once. So on this Holy day please pray for engraftment to stay with Simon of Marrians cells, for all the days of his long healthy life. thank you.
Its been an uneventful stay so far. Which is good. Simons rash is the same. He is on IVIG daily for 4 days and is receiving iv antibiotics. He is very playful today and happy and just seemingly unaffected by all of the rash and swollen lips and cheeks that he has. We are in major isolation but noone really thinks its the pox so that is good. A couple more days of the same and we will be able to go home. We pray for that. The girls are with lita today and Dave will be home with them again tonight and part of tomorrow when they will come to visit us. Its quiet around here. People are sad they are spending Christmas in the hospital but we know Santa will visit once we get home.
So thats it to report. Hope you all enjoy the next two days of festivities and keep the prayers coming and say them for all families spending time with their kids here at Childrens. You seem the strain and worry on the parents faces all the time and its so heart breaking to know exactly what they feel. I cry all the time when I see families in distress here. Its a sad thing. Love your family and be thankful for good health. God Bless. Love Tracy and David
Well I guess we celebrated too soon. We are being admitted as I type this. We are being held captive in the clinic b/c there are no rooms. We had an appointment today for blood and just a once over and Simons rash looks worse. They looked at him and said "he has chicken pox". I freaked out. It could be potentially fatal for Simon. We did blood, called in dermotology, hemoc saw him and a chest x-ray. All signs are showing it is not chicken pox but to be safe and since it is probably viral, they are sending out blood to check for a bunch of stuff and admitting us for iv meds to be safe. We will be here until at least Tuesday, if we ever get a room.
Its a little set back, we will prevail and God will shine upon us. My heart breaks for the girls as now we will be postponing Christmas with a little white lie telling the girls I spoke with Santa and he promises to drop off gifts when we are all home. Its heartbreaking.
Simon is otherwise doing well. His counts of White cells and platelets are up so this hopefully is just a bump in the road. knock on wood and pray very hard at this special time. Thanks to everyone for all the well wishes and gifts and food. We so appreciate it. Sending out love to all of you. Enjoy your families. God Bless, keep praying. Love Tracy and David
Praise to God we are home. Simon came home today. We are so happy to all be under one roof. We just got the girls to bed and Simon is resting comfortably in his crib. We hope he sleeps well. He has not been sleeping too good at night so we'll see. (we'll miss you tonight Bridgett. anytime you want to give up your night gig and be simmys home nurse let us know). Simon has an awful rash all over his face, arms, legs and some on his ears and neck. I didn't see him for a couple of days and I was shocked how awful he looks. The are not finding anything in the smears, labs, cultures and dermotology and stem cell all think its viral. So as you know that has to take its course and with a weakened immune system it might take awhile. It is not causing him pain or discomfort so hopefully that will continue to be the case as it disappears. He is on several meds at home and we did come home with a double picc line (an iv that goes to your heart for medicine and blood draws). Dave and I will have to flush it with heparin to keep it from clotting eveyr twelve hours. We are just so happy and exhausted and excited and thankful to be home. This is not even the best news yet.
CHICAGO.....We have engraftment of 99% overall Marrianas (donor) cells. Thank God. We pray and ask you to continue to pray for these cells to remain persistant and stay with Simon all the days of his long healthy life. Thank you all so much for the prayers, keep them coming. We have a long road ahead but we are home, Christmas is Monday and we hope to keep Simon healthy so he doesn't have to revisit Childrens for a very long time for a overnight stay. We are due back in clinic on Friday and I imagine we will be there 3 times a week for a while.
Enjoy your family, your holiday everything around you. YEAH!!!!!!!! WE hope to carry the love and happiness through into the new year. God Bless Love Tracy and David
The neuro surgeon came in last night to tell me that he thought the fracture should heal on its own and that there appears to be no damage to Simons brain and no bleeding or fluid. There is inflammation between his skull and the skin layer which should subside. This should take at least 6 weeks to heal. There is a small chance there could be a complication when the bones fuse back together but he says it is very small and we have to follow up with him in February. I cannot even go to where my emotions are. Today Simon had to undergo a skin biopsy for this infection that surfaced and is now on his skin and terrible in his mouth. They are running cultures and slides on it. His medicine was switched and he will start something new today to try and help it while we wait for the cultures to come back. He and I are exhausted. They have talked about sending him home next week, we hope we can clear the infections and get out of here. His WBC is down today as is his platlets so please pray for Simon that all comes a better place with all of this crazy infection stuff and we can go home and stay there. We hope his donor cell counts are still up and will stay there. They will draw vntrs again next week. Thank you for the calls and e mails and the prayers. We so need a break.
I gave Simons g-tube a good cleaning yesterday and put the mepilex foam on it and today it does look a bit better so maybe, that is going away, we can hope.
Take care, enjoy the many holiday things going on around town and most of all keep sending us prayers.
"Those things we consider difficulties are often God's opportunities for our greater blessing. We must trust, BELIEVE, HOPE and continue to walk the path he has laid before us. We will prevail. Simon will prevail. So onward we walk. God Bless Love Tracy and David
After waiting a day and two and a half hours this morning they finally did the CT scan. I was told that Simon has a lineal fracture on his skull. There is no sign of blood or fluid but the bone is cracked like a "Y". I am here alone and Dave is with the girls and he doesn't even know yet b/c the cell phone is not working. I am not happy. I am waiting for the neurology surgeons to come in to make sure that nothing more needs to be done. I cannot believe this. There is no stopping the onset of things our son is having to endure. The pain and suffering is too much to bear for one little guy. While Simon appears to be fine he still has a fracture and now I question, are we sure there is no hemmoraging going on inside his beautiful little head. I am sick about this and it should have been preventable. It should have never happened. I'm pretty angry that after the incident noone wanted to even mention it to us and now this is the news we get after "I" noticed the swelling and asked for a CT scan (which I asked for the day he fell). I pray to God it will heal and not cause him any other affects. Simon also awoke to mouth sores that do not appear like the normal "stem cell" sores and his g-tube is still raging with infection. When will it stop. I'm sorry to be so angry today but it is what is here on the surface now. Please pray simon is okay and that this does not affect him in any way, in his beautiful, smart little mind. Thanks. God Bless Tracy
Okay this is a difficult update for me to write so bear with me. Alot has been going on the last 24+ hours. We have been very concerned with Simons g-tube site as it has gotton increasingly worse. The docs tell us its because he has a white count coming back but to listen to him scream in pain every time it is touched or everytime you hook him up to feeds and when he tries to sleep and the mickey gets pulled on him is heart breaking. The site is red, swollen and just yucky. Today Dave and I felt it necessary that we both be there when the doctors came for their rounds. We were told they agree something more needed to be done so we stopped the antibiotic he has been on and started something new in the hope that this will push the infection over the edge along with the white cells and get ride of it once and for all. Pray for that. We are still dealing with the vomitting twice a night and "we are hopeful" as Dr. Duerst constantly says, that once the infection calms down that will stop as Simons stomach starts to heal. I don't know if I"m just anxious or if it just feels like this has gone on forever but seeing Simon hurting is a hard thing to do when he is such a happy boy all the time.
With hope that we are on a path to healing for the g-tube we have been hit with something even more scary today. I noticed when I first walked into his room today that the left side of his head (which you can see perfectly now b/c he is completely bald) had a raised area on it. When I touched it it definately was filled with fluid. Immediately I thought to the fall he had almost two weeks ago and I panicked. The doctors looked it over and agreeed, it has fluid in it. So tomorrow he is tenatively set up for a CT scan. I've wanted one since he fell but they felt it was not necessary since he did not exhibit signs of mental distress. So this sits in the pit of my stomach and again, we ask that you pray that this fluid gets reabsorded overnight and that it is nothing to worry about. He has had the pseudo tumors in the past but they do not think this is that b/c of where it is located. Again, I pray to God to watch over us.
I am almost scared to post this but it is good news, even though somewhat premature. They decided to do vntrs yesterday with a white count of .6. Usually you cannot do it until the WBC are over 1.0 but they drew them and processed them. Today we were told that they were not able to measure the t-cell, b-cell, myloid etc counts but the WBC came back 99% donor (Marrianas) cells. So I"m not celebrating yet but it is a step in the right directon and there is a long way to go to keep them but we say to all of you, thank you for the prayers, they are working and we need to ask that you keep them up. We need all the praying to continue and the strength to get us all through it. I will feel better once they can measure the b, t and other cells that are essential for immune function.
On a "star" for the day note, Simon made the Oak Leaves (Oak Park/River Forests local newspaper) with an article on page 9 about him and a very giving family in Oak Park that is donating part of their sales from their company to cure4simon. We thank you for that and ask you to check out the adorable photo of Simon in that paper.
Dave and I want to thank all of you for everything. The prayers, donations to cure4simon, the gift cards, time, shopping, gifts for Christmas and the donations to the perfect dinner. They have meant so much to us and while I have very good intentions of sending each and every one of you a thank you note, please know that I will do my best to get them out when we free up a little time. But everything is so much appreciated by our family. God Bless each of you and Please KEEP PRAYING for Marrianas counts to stay strong and steadfast forever and for Simons head to be okay. Love Tracy and David
Well we have an ANC (absolute nutrafil count - these are the germ eaters). It is not a big one but this morning when Simon woke up fussing and I accidently hit the wrong button on his pump and had to call the nurse, Bridgett came dancing in the room all excited pointing at the board where I ask daily counts be written saying we have an ANC. We were both really excited. This means the cells are coming back. YEAH!!!!! We are at day 13. It seems so soon to me but its in the normal time frame and we are hopeful they are Marrianas cells. They stopped one of the antibiotics today and will think about stopping another in a day or two once the white cells attack the g-tube infection and start clearing it up. So this is good news. We still are dealing with alot of diarrhea, vomitting a few times a day and he is not eating or drinking barely anything. Those things hopefully will come back with time. Its hard not to see your baby eat but I have faith that it will come back. It took me almost 9 months to get him to want to eat so I'll give him a few weeks to decide its okay to enjoy food again.
We wanted to ask for some extra special prayers this week. At this very holy time for many of us we ask that you pray for Simon to have the returning cells be all Marrianas and that they stay with him for the rest of a very long, healthy life. Thank you so much. God Bless Everyone. Love Tracy and David
We are at day +11 and are starting to see some white cells come back. This is a good thing. We are hoping they will all be Marrianas. Simon is doing well. He is completely bald on the back of his head from rubbing on the bedding and this morning I decided to take the scissors to the front of his head. The hair was falling out in clumbs and it was all over both of us and getting in Simons mouth. So mommys barber shop was opened and all the locks were thrown in the garbage. Sad he has tufts of hair on the top and is bald right in the front. He is still a very handsome little guy. His spirits are extraordinary today even though we did not sleep too good. Simon threw up earlier than usual resulting in 1 am bedding change and we were up alot after that with alot of annoyances that come with being in the hospital. I'm pooped today. His platelets continue to be low so he was given another round today. They say expect to see him recieve maybe 2 more doses of that until he can start producing his own. Right now he rests and I'm thinking of walking to starbucks for a wake up mocha. His skin looks good and his g-tube looks worse today but doesn't seem as tender to him so that is a blessing.
Dave took the girls to see happy feet so I hope they all come out of the theatre dancing and showing off their new waddling dance moves. They were so excited to go. Hoping it will lift Daves spirits as well. Say a little prayer for Daves brother Tom who was admitted last night with pneuomnia, get better Tom we love ya.
I just wanted to say that at this time of year when things are so busy but so emotionally stressful its easy to let little things bother you and for you to be angry about them but please try to enjoy those around you and forgive what is aching in your heart. None of us are promised tomorrow so please make the most of every day that you can breath the fresh crisp air and shield your eyes from the blinding winter sun and call or hug or love those that you call family and friends. Life would be so lonely without that. Have a good weekend, lots of love. Say your prayers for Simon to allow Marrianas cells to come back inside him with a vengence and stay there in their new home. God Bless Love Tracy and David.
Today Simon is receivng Platelets. He had hemoglobin about 5 days ago and his platelets are down to 12 so they have to give him some. He is experienceing bruising under his skin because of it. His counts are zero, zilch so he needs support until his counts come back up. Its day +8 for us. Its still a little early to see the counts come back up but we are concerned since we didn't experience this last time. Not concerned in the sense of "why is this happening" because we wanted all his cells to be depleted but just concerned for his health while we wait and pray they do start to come back up. With the g-tube infection there we need to make sure he does not get another infection or anything gets worse that he can't fight off.
Dave is at the hospital, he is feeling sad and lonely and just not happy his son is there and going through this again. Its so hard to not be able to be there together. Calls are welcome so if you want to lift his spirits maybe let him know you are thinking of him and Simon. One thing I think people tend to do is not call, not let the family know you care and that really makes the ones going through the illness feel very isolated and alone. Simon naps from noonish until 3 and after 8:30 pm so those are quiet times but otherwise......
Okay so please pray for Simons counts to start coming back in full force as Marrianas cells and that they stay and give him the immune system he needs to be a normal little boy without worry of catching a cold. God Bless. Love Tracy and David
Its very easy to lose track of the days here but with all the people in and out you know its Monday. The weekends are so quiet and lonely here. Simon has had a couple of rough nights resulting in him and I not getting much sleep. He pretty much makes sure he gets up to one big vomitting episode every night and he is very restless due to the infection at his G-tube site returning. The bad thing (well good and bad right now) is that he has absolutely no white blood cells to fight the infection so it is festering and while the antibiotic is trying to fight it off its not getting all of it. I'm told today it could get worse before it gets better. Its painful to him and that makes me very sad. He is comforted by being held which he gets all the time and we will pay dearly for it when we bring him home but right now, he needs the lovin care so he gets it 24/7. They are starting an additional antibiotic for gut infections just in case its more than what he had in the g-tube last time and so that they can cover all the basis and hope it doesn't get worse. So that will give him no time off the iv poles. At least we were getting little breaks where he could toddle around the room without the pole but that is on hold until he feels better. I'm beat and looking forward to going home tomorrow to get some rest after I get my work done. I miss Dave alot as we don't see each other but 10 minutes every few days and I am looking forward to spending time with the girls and going to do a little stocking stuffer shopping for the kids. Its hard to be away from Simon as you worry alot when you are not on watch at the hospital but I know hes in good hands with his dad so that helps. Please continue to pray that his counts start to come up sometime next week and that they are all Marrianas cells with stamina. God Bless you all. Enjoy all that is around you, its precious as are those who you share your everyday with and your home with. Its hard to be away, especially this time of year. Love Tracy and David
Well its certain the affects of the Chemotherapy have kicked in. Simon is not interested in food or anything to drink and he is vomitting and sleeping alot. Its so hard to see him like this. We pray it only lasts a few days and we can start seeing him back to his old self again. When you can't sleep at night because you are sick to your tummy that is not fun. They started him on an anti nausa med every 6 hours so hopefully that will help. I'm heading up to relieve Dave and hope that Simon can feel comfort knowing one of us is always there. Please pray for Simon to feel better soon so he can eat and maintain his weight. They are starting him on bolus feeds during the day in addition to his 10 hours of night feeds.
I wanted to thank the Mothers of Multiples for helping us out in our Christmas needs. They are going above and beyond for us and we so appreciate it. I also have to thank the Barton Family for their roll in donating a portion of their sales to Cure4Simon and my old law firm, KMZR for sponsoring a Jeans Day to benefit Cure4Simon. We apprecaite all of the love that is going into caring for our family. God Bless you all.
Sorry to update again but I had to share a very scary accident that happened today to Simon and I want you all to pray he is okay. Simon was napping and Dave and the girls had just arrived at the hospital to relieve me and so we were all in the antie room exchanging gowns and things and I was going to take the girls to the playroom so Dave and I could have a moment together when we heard a loud crash, a thump and then screaming. We looked in Simons room and the crib rail had crashed down and Simon fell to the floor on his head. It is like a 4 foot fall onto a concrete floor. He was screaming, I was hysterical and I screamed to the nurses and they and doctors came running in. WE are not sure how it happened as the crib rail was all the way up but one thing is for sure, if nothing else it should have stopped at the half way mark and Simon should not have fallen. He has a huge lump on his head and is being watched closely. He is acting ok and ate dinner so I am home now worrying and Dave is keeping a close watch on him. Please pray his head was as hard as Daves can be and that he is okay. I'm still shaking. God Bless. Tracy
75 November 30, 2006 at 02:51 PM EST
Just wanted to send out a quick update before I go home for two days to spend time with the girls and my computer to do some work. Its pretty boring here. Boring is good. Simon is doing well. Tolerating things, seems almost too good, so we'll see what these next few days bring when more affects are to kick in. He is not eating and is very tired but still manages to play, flirt and laugh alot. All the nurses love him. Hes truly an amazing kid. He is very chatty with everyone.
Marriana is doing really well. Almost like she has put it all behind her which makes me happy. I am anxious to spend time with her and Isa right now as I have not seen them since the harvest. They will go back to school tomorrow and get back into a more normal routine which will be good.
Remember to use our amazon.com search for all your shopping on Cure4Simon.org and a % will be donated to Simon from your purchase. Please have a safe evening with the snow fall and get out there and make snow angels to watch over Simon and all of us. God Bless. Love Tracy and David.
74 November 28, 2006 at 03:29 PM EST
Whew, its been a long two days. Marriana was harvested yesterday, incidentally my birthday (which Dave felt the need to let the whole 4th floor aware of) and she gave a really good collection of cells. MOre than Simon needed so they already gave him his dose and are freezing the rest. Mar and Isa are laying if bed watching TV here and we have about 2 hours left for day twos harvest. Marriana has been a trooper. She was a little scared and stiff yesterday but today she is not as nervous and just anxious for it to be over FOREVER. As are we. Simon received his cells and so far is doing well. Yesterday was a busy day and we ended it by sending Isabel home with grandparents and they allowed us to all be in Marrianas room for a short time before Simon was sterilized and sent into isolation. Simon was all over marrianas bed and trying his best to climb up the incline of her bed only to fall on top of her, laugh and lay for a minute to hug her. It was so cute. No Hill is too High for Climber. Our friend Steve brought us dinner (way too much but it was delicious) and the Marriana and I had a pajama party with books, cookies and a movie. I slept in bed with her and we started the process all over. Dave is a little stir crazy so he will be happy to get home today. It is hard to handle Simon as he does not sit still and there is little places for him to go. His counts are down, not completely gone, so that worries us but we are very very hopeful and we have faith that this is it, our rebirth was today. So keep the faith, keep the prayers and I'll keep you all posted. God Bless. I realized having two kids in the hospital is very hard especially when there is next to no sleep involved. I hope to have them both home very very soon. Until the next posting.....pray for all the sick kids. Its heartbreaking to see it everyday. I was lifted today when I saw a little friend from simons first transplant and she is doing good and home and almost done getting her meds, one month to go so you gotta have faith. Love Tracy and David
73 November 26, 2006 at 09:43 PM EST
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
