March 2006 Archives
March 31, 2006 at 04:41 PM EST
The VNTRS are finally back and we are happy to report they are going upward. Marrianas cells are recording at 59% which is up 11% from last week. The killer germ cells were 63% and the T-Cells 65% Marrs, so that is good news. We are very happy by the numbers. We are feeling a bit discouraged and frustrated even with the good news of the numbers. Its been a hell of a week with the intercranial pressure, which persists, and all the scary tests Simon has had to go through. We are thankful nothing worse than the increased spinal fluid has come from those tests but Simon is certainly not out of the woods. He continues to vomit and is very irritable. We suspect he is hungry but doesn't want to really eat and when he does, he vomits. Its very hard to watch week after week. They tell us time will help heal that but hes a 7 month old baby who has no interest in eating and its hard to watch someone so young vomitting all the time. I can't even explain what is has done to mine and Daves spirits. We are tired, and frustrated and lacking patience. Someone asked about us and the person replied "the sparkle in their eyes is gone". Its really so true. We have two beautiful daughters who feel this no matter how much we try to be normal and they try to act normal they see the fear, the pain, the frustration. All of it. Another weekend of "lets wait and see" which starts week 10 for us next week. I pray for a good beginning for that to start soon. Thank you God for the counts on Marrianas cells, please continue to bless us with those increases and please help Simon to be relieved of his gastro issues and able to eat and feel less irritated. Thank you all for your prayers. God Bless us All. Tracy and David I posted a few new photos, I'm sorry to say I can't get them bigger but wanted to share them with all of you.
March 29, 2006 at 08:51 PM EST
Just a short update today as I am exhausted. Simon had a rough night and that made 3 nights in a row I have not slept so hoping for a winner tonight. Today was ok. They put Simon on a diuretic and are starting to take him off his metadone (pain narcotic that we haven't really thought he needed for at least the last week) as it has the rare side affect of swelling in the brain. Of course we go for the rare stuff. They still are not sure what is causing this and the diuretic will only solve the symptons not the cause. So we search. He is still not keeping food down but I continue to offer ceral and sweet potatoes. Tonight I was suppose to have dinner with Dave and the girls who I miss terribly but our hot water heater broke and so Dave and his nephew are trying to install a new one that Dave had to go buy. Hope it all works out. I can't wait to go home tomorrow night and see the girls and sleep in our bed. Our immunologist from the NIH is here tomorrow so I look forward to that visit and more info on the NEMO and what to expect. Well have a good night and I will let you know what the VNTRS are tomorrow. Do the Cell Dance extra hard tonight. Love and prayers Tracy and David
March 28, 2006 at 10:43 PM EST
Things went pretty well
Today after a very anxious night and a busy morning the CT scan and spinal tap went pretty well. They didn't find any blockage, blood clots or infections so far. They are telling us that Simon has something called pseudotumor cerebri (or false brain tumor). Its not a tumor but swelling caused from poor absorption of the spinal fluid. The doctor drained 4 mls of fluid out of his spine becuase there was increased pressure there. We were hoping that would eliminate some of the swollen head top but so far it has not. The doctor from neuro told us that they will probably put him on meds that will help the spine to produce a little less fluid and hopefully the swelling will go down. Simon has been throwing up all day so we will have to consult them about this as this is a sign of that but he also has been throwing up alot anyway and this will definately keep us from going home Right now he is chatting it up in his crib.
Tomorrow we have another round of vntr draws to see how many of marrs cells are present. Simons counts have been low for a few days so we need your prayers. The girls, myself and their grandma and grandpa do the cell dance at home. It consists of all of us holding hands and jumping around with crazy legs singing about marrianas cells growing in simons body and simons leaving. So if you are so inclined, try it at home with your family. Thank you so much for the prayers - they are helping. We ask tonight that you pray too for friends of ours nephew who too is dealing with a very serious illness and is battling it again. God Bless you Amanda and Mike and your family. God Bless all of you. Hug your children twice tonight and snuggle with your loved one. You never know how much you would actually miss doing that. Good night and God Bless. Tracy and David
March 27, 2006 at 11:04 PM EST
Well today started with a smile. They told me they were going to start getting Simon off some iv meds to put him oral so we could try to go home sometime next week. I was so happy and almost in disbelief. Tomorrow will be 9 weeks since we came here. As I sit here tonight staring at my precious Simon my heart is very heavy and sad and scared again. While the day started out good it went south from there. We had to take Simon for an EEG to see if his brain waves were normal. That turned out okay but the neuro doctors are concerned with the bump on his fontinel that as I stare at his profile is very prominent tonight. They scheduled a CT scan with and without dye and a Spinal tap for the morning to rule out some things. They are looking for an infection in the brain, pressure that could be relieved by reducing some spinal fluid or perhaps a blood clot. We are so scared. It is somehow unbelieveable to us. Some of the meds he is on could be the cause, we just don't know. I barely had the strength to make it back to the room carrying Simon. It was like I was removed from myself and didn't even notice the hallways of the hospital. When I got to the room I just broke down. I couldn't beleive it. I wasn't expecting all of this, again. I pray for good news. For the tests to show all is normal and for Simon to continue to get better and smile tomorrow, as much as he smiled for me today. He was laughing at me as I danced with him and played with him today. We even introduced sweet potatoes into the diet today and he sorda liked them.
My body is exhausted but my mind is racing. Again, my friends, we ask for your prayers. Our son needs your strength as do his parents. I ask that you turn to prayer for us and Ask for Simons health to be fully restored and for the doctors to have guided hands and for all tests to show us that Simon is okay. Thank you. Tracy and David
March 25, 2006 at 09:52 PM EST
Wanted to let you all know that Simon was fine through the GI scope procedure and the new picc line was placed on Friday. The girls, Dave and I spent the day at the hospital waiting for Simon to come out of recovery again. The girls did great actually. Heidi, the childlife specialist that they have come to know very well took them for some fingerpainting and projects so that helped Dave and I out a bit. I was not happy when I saw him in the recovery room. They had replaced his NG (feeding) tube while he was under sedation and Simon had been crying when we walked in. I noticed his crys seemed to be getting more faint and as he was still out of it I wasn't sure what was going on but something didn't feel right. I took his pacifier out of his mouth and saw the NG tube coiled up in the back of his throat. I panicked and told the nurse to yank the tube, after he looked he was like oh and started to pull it out. I was not happy. It turns out during the procedure they had to insert a breathing tube because he was so little and as they pulled it out they pulled up his NG tube with it. I was pissed that they didn't even check in his mouth after doing that. So just proves you always, always have to be there with him no matter what. We got him back to his room and Dave actually ended up having a rough night with him. He was up alot. The doctors tell us he is having a bit of withdrawal from coming off the narcotic medicines hes been on for almost 2 months and is very restless. Today we decided to try and start getting him on a more normal schedule so we are limiting when people can come in his room. Today he took two good size naps and I pray for Davids sake he sleeps pretty well tonight. He has been eating ceral and keeping it down and since we switched formulas today, we are hoping he starts to enjoy the new one. Dave said it tastes nasty so its no wonder Simon doesn't want it. Hopefully a few more days and Simon will be eating and sleeping better and keeping food down. So far he is tolerating the feeds.
One of the stem cells doctors told us today that he is confident that with where Simons counts are today that he expects him to have 95% of Marrianas cells in 60-70 days. We are hopeful and pray for that to be true. There is no talk of sending him home but we are anxious to get him here. I miss being a family in our house and really can't wait to be on lock down here at home all together. So we continue to pray and hope.
Today our good friend Patti came over and painted fairies on the girls bedroom walls. She told them Marrianas was the giving or donor fairy who helped Simon and Isabel's was the helper fairy who helped Marriana be brave. The girls liked the concept and talked about tonight again before going off to bed. Thank you Patti. All our friends and family who are supporting us....we thank you so much. Please keep praying. God Bless us all. Tracy and David
March 23, 2006 at 11:20 PM EST
Today and yesterday were very emotional days for me. Simon has been projectile vomitting since Sunday and has not been able to keep even his oral meds down. Yesterday after a few days of bacteria growing back in his cultures they decided he needed to have his PICC line removed and that set up for a scrambling day. Due to the fact that Simon is on so much medication they really need 2 different lines to put all the meds through and one good line to do blood draws. Since they did not have that with the line gone they had to call in the vascular team to try and get two new ivs in him. After holding him and trying to comfort him with words, songs and hugs, after 4 attempts of poking him they were finally able to put in one iv line. Simons eyes seemed to keep looking at me asking "why mom, do something". It broke my already broken heart again. I did all I could to hold it together and after the team left, I balled my eyes out, crawled into simons crib, put my arm around him and sobbed. He finally fell asleep. The night was no better as he was very restless and kept shaking the crib from moving his head from side to side and swinging his arm back and forth. I had to call in the resident at 2:30 am because I was so worried. We slept about 2 hours and I finally got up and held him. After throwing up twice in the morning the drs. decided I should not feed him. He also was exhibiting some swelling or pressure on the top of his head with a "bump" if you will that they still are not sure what it is from and they are watching it. I asked if they should be doing a CAT scan. It has been a scary week. TOmorrow he will have to go under and get another GI scope to see if they can find the cause of the vomitting and he will get in a new PICC line. We hope that will help to resume a more normal medication schedule and some rest for us all. I am home tonight so I hope to sleep some after being awake for 4 days practically. We'll see how that goes.
The ANCs came back today and they did go up slightly. 48% Marrianas cells Go Marriana!!! I don't know what any of this means since Simon was given a reduced chemo and they did not wipe out all his cells, we are not sure how long its suppose to take or if there comes a time when we know it did or didn't work. We keep praying Marrianas cells continue to go up and Simon continues to be strong and come out of this healthy and home with his loving family. Marriana said at the dinner table yesterday that when she can't sleep she lays in bed thinking about Simmy and she wants him to get better and be home. Isabel added that she wants him home so she can play with him. We all want him home. Please continue to pray for Simons health. God Bless Everyone. Tracy and David
March 21, 2006 at 01:56 PM EST
Hello everyone. Sorry I've been out of touch with all of you its been a few days of waiting and watching with Simons skin. He has been having the redness and itchy peeling skin return and go through its cycles. We have the doctors here telling us one thing and my immunologist at the NIH in Washington telling us something else so my job has been to get them together and talk, which finally happened last night This is a full time job you know. We are very fortunate that Dr. Orange who is at CHOP (Childrens Hospital of Philadelphia)who discovered alot of the NEMO mutations and is the NEMO expert has also been conversing with all of our doctors. So we feel confident that everything that can be done for Simon is in the works. Simons counts continue to fluctuate. One day they are up, another down. Its hard to watch that happen and wonder all day everyday. Dave and I actually got to spend an hour alone at potbellys yesterday, whew big day out, and we talked alot about how that is the worst part, the unknown what is going on inside of Simon. I've done alot of research in the last few days on things they have been telling me and things I have just discovered in my research and I"m starting, barely, staring to understand all of this better. Of course, just when I feel that way, something new is presented.
Simons ANC levels are doing well. HOpefully we are on our way to engrafting. That will be told better after his next VNTR/DNA draw this wednesday to see if the amount of cells that are Marrianas has gone up. Please tonight, tomorrow pray for that for Simon and for us. It is what we need most and hope to start seeing the light so we can try to plan when he can come home. I miss our home. Look around your house today and see all the things that bring you comfort to be there and just relish in the thought that you are amongst all of the things that bring you happiness. Its something sad to miss and long for.
Today the girls are with their friend Tessa for a few hours of playtime (God Bless you Terri for taking them in our bind today - hope they are behaving). This fills my heart with joy because I know the girls love playing with Tessa and they get to feel some sense of normalcy.
Thank you all for the meals, the calls (which are always welcome), the thoughts, prayers and friendship. We truly appreciate it all. God Bless Tracy and David
March 17, 2006 at 11:20 PM EST
CELLS ARE GROWING
Today we found out the percentage of Marrianas overall cells in Simon are 40%. It all gets broken down into different types of cells so this is the overall. I have to admit I was hoping for a higher percentage but the doctors tell us this is good. We have to keep praying that Marrianas cells continue to grow and take over completely Simons bone marrow and give him the new immune system he so needs. I think if his skin was not so red and peely I would feel better about this number but we have to believe that this is just the beginning of Marrs cells taking over and that next week with the next VNTR blood draw her cells will be a higher percentage and that we will have ANC levels of 500 or more. We are nervous and just praying for continued growth of Marrianas cells and strength from our little simmy's body to accept her cells continues to bless this sweet childs life. we will keep you all posted. Its all waiting for us now and we hope to continue to move forward. We did start to feed him ceral yesterday and he seems to enjoy it. Hopefully he'll be able to keep it down. Well after working the last two hours and having my Isabel give me a run for my money today emotionally testing every ounce of patience I could find, I need to get to sleep. So I hope this makes sense and ask for your very strong, continued prayers. God Bless Tracy and David
March 15, 2006 at 09:49 PM EST
Please Pray
Well tomorrow is Day +14 in the stem cell world. With that they will be doing a VNTR blood test to check and see if Marrianas cells are taking over Simons bone marrow. We will get a percentage that starts a series of tests for months that will determine if the transplant worked or not. We are excited, anxious and nervous. We will possibly know preliminary results late Friday afternoon. Since so many of you tell us you are checking this site daily, which we apprecaite, we would like to ask for the power of prayer in numbers. We ask that tomorrow you say a prayer to help Simon and ask God to let Marrianas cells find their way to Simons bone marrow and make a new home. We ask that Simons body accept her cells and welcome them. In order for us to have engraftment we need to see his ANC levels about 500 for 3 consecutive days. So far we are at 323 but they change up and down daily just like all the counts do. Its such a number game. So tonight we ask for prayers, lots of them and hope that soon Simon will be well and we can come home. This is the end of the 7th week for us here at the hospital, we are all tired of being apart and long to be at home together. So thank you for the prayers. God Bless Tracy, David, Isabel, Marriana and Simon
Today is just a waiting day. Simons counts are up and down everyday and we are waiting for a good white count to come in. He is having complications with things everyday and they are being addressed by the doctors as they come up. Unfortunately he has had some of his angry skin issues return and there are still no answers as to what exactly is going on with his skin. Is it graft vs. host disease or is it part of the ED from his disease? Noone can answer that. We are at week 7 of being in the hospital and its starting to take its toll on all of us. The girls cry when I leave to come here b/c they know I will not be home for days. I made them a tape of stories, jokes and songs and they really enjoy that. We also have a paper chain so they know when they will be seeing me again. Its hard. They cry in the morning when Dave leaves for work and ask him to stay home. Its all hard on all of us and we have had some sad days. I pray in the days to come we can have Simon feeling better and get some good news on his counts and pray that the cells fighting are Marrianas and will continue to be hers. For now we wait. Please pray for Simon and for strength for my family. Thank you. God Bless
March 12, 2006 at 08:55 PM EST
Day +10
Well its been a rough weekend. Simon was dehydrated and his sodium jumped up again. He has been throwing up alot so that is what caused all of this. He is super crabby and not really wanting to be moved around. He is exhibiting signs of more skin problems to come. They think he might be having a bit of (GVHD) graft vs. host where the donors cells attack the recepient because they are foreign. They thought he had this before the transplant, which was baffling and very painful for Simon and the main or only reason he was put on morphine, so if its returning we pray it will be less intense and short lived. They do say if it is gvhd that may mean the cells are working. Who knows what to think. It is so sad and scary to see your six month old this way. And to have him not gain any weight but to lose it and weigh what a 2 month old would weigh. We are not sure what the next step will be with the nutrition but we are praying that Simon starts to recover and able to hold down his feeds and grow. He has diarrhea along with it so hes not retaining much.
His counts are slowly going up and we pray that when they do get past 1.0 the cells will be Marrianas only. So if you want a specific pray please pray that Simon has engraftment of 100% Marrianas cells forever. Thank you all for your support and friendship. Your words of encouragement help us get through the days. Tracy and David
March 10, 2006 at 04:23 PM EST
Today is Day 8. Things have been moving along at a steady pace and today is just a day that Dave is sitting with Simon being bored and lonely at the hospital alone. Things are stable and his counts are still low going up or down a tenth of a point or so. He is still struggling to keep down food and they tell us its not from the chemo anymore but from his gut not being used to working properly. He is still losing weight and we keep hoping he will start to be able to eat and gain weight back again. They are starting to slow him off his pain meds and will slowly start taking him off of his IV medicine and put him on some of it orally. They are trying to get him in good shape for when he can be released in the weeks to come. We are nervous for him to come off some of the meds because he has been doing so good on them and we get nervous for his skin again. Its a very crucial time for his immune system and we cannot take any chances on him getting any kind of infection. We want to come home and stay home.
So that is all that is going on. Its all waiting right now and thank god simon is stable and doing ok. Continue to pray that Marrianas cells are making their way to Simons bone marrow and will take over completely in the next 100 days and that we see only her cells in the next couple of weeks. Check out some new photos posted. Thank you all for your support and friendship. we mean that from our hearts. thank you Love Tracy and David
March 10, 2006 at 04:23 PM EST
Today is Day 8. Things have been moving along at a steady pace and today is just a day that Dave is sitting with Simon being bored and lonely at the hospital alone. Things are stable and his counts are still low going up or down a tenth of a point or so. He is still struggling to keep down food and they tell us its not from the chemo anymore but from his gut not being used to working properly. He is still losing weight and we keep hoping he will start to be able to eat and gain weight back again. They are starting to slow him off his pain meds and will slowly start taking him off of his IV medicine and put him on some of it orally. They are trying to get him in good shape for when he can be released in the weeks to come. We are nervous for him to come off some of the meds because he has been doing so good on them and we get nervous for his skin again. Its a very crucial time for his immune system and we cannot take any chances on him getting any kind of infection. We want to come home and stay home.
So that is all that is going on. Its all waiting right now and thank god simon is stable and doing ok. Continue to pray that Marrianas cells are making their way to Simons bone marrow and will take over completely in the next 100 days and that we see only her cells in the next couple of weeks. Check out some new photos posted. Thank you all for your support and friendship. we mean that from our hearts. thank you Love Tracy and David
March 08, 2006 at 02:20 PM EST
Well with the good we know comes the bad. Today is a very quiet day in the sense that Simon is sleeping alot. His platelets are very low today and he is going to be getting a blood transfusion this afternoon to boost them (which is common in transplant - doesn't make the mom feel better though). He is not able to keep anything down even his meds he threw up this morning. He is pasty white and very tired. They are starting very slow continuous feeds again today in the hope that his gi system will start working better as he is losing weight again and we need to try and get him going in that area again. He is a strong little boy (much stronger than his mom is at times) and we think he will be okay. Go Simmy.
The girls are missing me and the routine of family life offered them before all this craziness and Isabel is showing some definate signs of sadness and irritability because of it. Since we have noone to watch the girls this week Dave is having to stay home to watch them and that always affects us. Even though we have insurance we are still responsible for some of it and with a $300,000 + bill already we owe more than I thought we would. So its a balance of which thing to worry about more (or less if you can). Most importantly is Simons health. While the insurance is suppose to be paying for Simons care, Marrianas donation is not definately being covered (which in the law of donations doesn't make any sense to us)so down the road we will see. It scares me to think he could go through his lifetime max benefits in a few hospital visits and he is only 6 months old.
If you are still with us, please continue to pray for Simon that he can be strong and perservere and Dave and I can be strong in holding our family together emotionally and physically. Thank you all. Take care, Tracy and David
March 07, 2006 at 02:38 PM EST
Day 5'
Today is a good day. Yesterday was a relatively good day. Simon has again started to smile and laugh despite thowing up every few hours. He just seems to feel better. Its not hard to do after having his skin be in such a painful state for the last 5 weeks. After the chemotherapy his skin started to clear up a bit or at least become less red. He still has the peeling to varying degrees but we pray and hope and pray that he will never be in that much pain again from the skin.
Simons sodium has returned to normal and the infections he was having they are thinking were isolated to his picc line. With a good 5-7 days to go before his counts start coming back up we are still very nervous and cautious about infection. We bought a swiffer that we mop the floor with with clorox wipes and I wipe down the door handles and his crib with them as well. While he is in strict isolation and we are not allowed to really roam around I was able to get out and walk lincoln park today (I love the homes around here) and return to do some work in the business center before having to shower and return to my smiling boy. Like I said today, its a good day. I pray for many more good days for our son. If we can be prayer specific....let us all pray for simon to achieve engraftment and marrianas cells to be dominant and eventually all the cells that simon will have. She acutally has a rock solid immune system. While we continue to fight the flu and colds in our house, Marriana seems to escape most of it.
Today Marriana gets to take a trip to Toys R Us and pick out something special for being such a brave donor/sister. My only wish is that we could all be shopping together. Simmy and I will be there in spirit.
Thanks again for the prayers, keep them coming they are helping. Take care and God Bless. Tracy and David
Well Marriana made it through the harvesting on March 1st. It was a long day and she did awesome. She sat still for over 8 hours attached to the machine and was able to get a bit more cells than simon would actually need. Through the whole thing she did not complain once. She and her sister Isabel sat and played, colored and watched movies and we let her eat whatever she wanted. We now owe her a trip to the toy store for anything she wants. We are so grateful that she is able to donate to simon and hopeful that we see engraftment in the next 2 weeks or so. Simon received Marrianas cells the next day despite having very high sodium levels and an infection they were given to him at 10:30 am on the 2nd and it was pretty uneventful. We kept waiting for something to be but nothing. No music just 30 minute infusion and that was it. We pray now that her cells find a new happy place in simons body and start to help him heal. He has not been able to eat because of his sodium levels which they are trying to slowly bring down. There was question if his kidneys were working properly. So we wait. He now is having trouble with his picc line and they cannot draw labs from them which he needs everyday. They say there is a blood clot at the end of the picc line and that is close to his heart so they are worried and don't want it to break off because if could be very dangerous for his heart. They have started using a blood thinner which he gets in his stomach 2 times a day and we pray that dissolves it. This is a long road and we pray that everyday we hear some good news. Today we were told simon has two different types of bacteria a different one in each picc line so they are thinking it might be the line itself. so each day is something more and we try to hold it all together and be strong. For this we ask for prayers and support for us to get through this all. We have never asked for help for anything but this time we have no choice. We cannot do all of this alone. I'm trying to work from the hospital and dave is trying to work when we have someone to take care of our girls. Its a tough schedule to try and keep. We hope to hear some encouraging news in the meantime and keep praying to see our baby boy smiling again and keeping us forging forward. For strength we pray. tracy and david
March 02, 2006 at 10:08 PM EST
Day "0" and Counting
Well yesterday was a very long, busy, tense day for us. Marriana was harvested for 9 hours on the esphersis machine. She arrived at the hospital at 7:30 am and did not finish until almost 8 pm. She was a trooper. She handled it pretty well with expected times of being scared and crying and also curious but nervous. It was very hard to see her hooked up to a machine that was extracting her blood through her jugler vein in her neck but the good news is her collection was excellent and plenty to give to Simon. She and Isabel played on the bed together all day and watched dvds and ate alot of junk. But all in all Marriana sat very still and patient through the whole ordeal. At the end when the catheter was taken out after pressure was put on the vein, marriana started crying and blood shot out of her next like a geyser, I almost passed out and it was not a site that I enjoyed seeing. She didn't even notice it happened, which is good, and Isabel was watching Snow White, thank goodness. We are so very proud of her and of Isabel for being her support.
Simon did receive her cells today. He was moved to an isolation room last night where he and I spent the first of what will be many nights before we even know if we have engraftment. If you want to pray for us, pray that he has engraftment over the next few weeks. Simon has run into some issues with his kidney function and was not able to eat the last two days because his sodium is high. They are slowly trying to lower it and he was able to take 1 ounce every 3 hours. Its been a rough few sleepless nights. I had to come home to get rest tonight and Dave is at the hospital on call tonight. The chair "bed" in the room is less than comfy. Simons sodium levels have come down a bit so we pray that trend continues.
He received Marrianas cells at 10:30 this morning. Pretty uneventful as he slept through the whole thing and seemed fine with it all. We hope to see no side affects from the transplant, especially skin issues, Graft vs. Host diseasse. Since he and Marriana's blood types are not compatable (he is O Negative and she is B Positive)they tried to filter out as much red cells as possible and only give him her white cells which is what he really needs. Now we wait and pray.
In this time of renewal and time of prayer we pray for the Rebirth of our sons immune system through the generous donation of his sisters cells. May God have mercy and give Simon a new chance at a healthy happy life. Please pray for him. Thanks Tracy and David
