Journal History
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Friday, April 20, 2007 2:36 PM CDT
It has been almost a year since I last wrote. Nicolas has grown alot since last year. Healthwise he is doing great although we have had to increase the Prednisone dosage to at least once to twice a week. He has come down with several illnesses and was hospitalized for three days in January. He came down with Influenza type B and became quite ill. He has recovered except for some colds.
Speechwise unfortunately the progress continues to be very slow. He still cannot talk fluently. In all other areas he almost like a normal child. He plays just like any other child and he has become quite naughty. He really enjoys bothering his older brother and making him mad. He will be starting first grade this next semester of school. For now I feel he should remain in Special Education and his doctors feel this is the best decision for now. This summer I hope to make some more progress with Nicolas in the speech area.
Jeannie
Thursday, June 8, 2006 6:26 PM CDT
Hello everyone,
As usual it has been months since I last updated Nicolas's website but this time I'm very happy to report that their are several changes. First of all Nicolas is finally 100otty trained I have been working with him for more than a month and he finally does everything by himself-no more diapers, I never thought that day would come. He is also only taking two doses of Prednisone a month he is almost completely weaned off and has not had a relapse. Nicolas can also dress himself put his shoes socks and undress himself without my help. He is independent for many things he doesnot need my help to feed himself and if he wants something he goes by himself and gets it out of the fridge. He seems to understand almost all my commands. Speech we are still working on he is saying about 15 or more words but not clearly, for shoes he says shoo but it is better than nothing. He can also brush his teeth by himself. He has also grown quite a bit and is catching up to my seven year old son. He has made lots of progress these last 2 months and hopefully the next time I write he will have advanced even further. Healthwise so far so good, by August he will be cure from cancer.
Jeannie
Thursday, January 12, 2006 10:42 PM CST
Nicolas has been doing great healthwise since I last wrote, except for some colds but he overcame all of them. He continues on prednisone but is only taking a dose every six days, I feel we have established a remission. He has a very slight tremor, and it is only visible when he trys to do something that require gross motor movements, for example when he trys to button a shirt his hand trembles, so he is still unable to do many of those things. He has finally learned to take off his shoes, his pants, and he can almost take off his shirts-those that donot have buttons. Speech we are still in the same situation-it is non-existent although he does try but it is very difficult for him. I still have not been able to get him out of diapers, he just doesnot want to use the bathroom, and he can use it now because he can finally stand without loosing his balance, he runs now too. He can also eat most of his foods by himself, but he is still a very messy eater, but for now I just wanted him to learn to eat by himself and he is getting better when holding a spoon. He has his own bed, he slept in a crib until 2 months ago since he used rock himself to sleep, but not anymore. So many advances have been made and hopefully the next time I write I can report that he is now beginning to say complete words and not just the sounds of them. We are trying to take him out more and more, and tomorrow we are taking him to the movies and to eat at the Pizza place, these are Nicolas's favorite past times.
jeannie
Monday, October 24, 2005 11:38 AM CDT
Hello Everyone,
Nicolas was sick last week, and just when he finally got better, he woke up with a little fever. But he is still his usual happy self. He is just a little tired today. He's been getting sick alot but it is probably due to the Prednisone, he's been on it since last December, almost a year. He has had no long term effects from it. Other than the colds he's been getting he's been doing great, the shaking is much less, and at this point a remission has been established. I have been reducing the medication to a dose every 4 days, and so far except fo a slight tremor when he tries to do something with his hands I have not noticed much difference. He runs around the house and falls much less, seems much more coordinated. There are still some challenges he has not overcome, going down stairs is still quite difficult and I have been unsuccessful in potty training him. It is difficult for him to balance himself without using the toilet as support. Since this is not very clean I will wait for now. He gets bored when at home and his favorite thing besides visiting his grandparents is going to school. He is still not talking but perhaps one of these days I will be to write the contrary.
Happy Halloween
Jeannie
Sunday, October 2, 2005 4:55 PM CDT
Nicolas has turned 5 years old, and for the first time he actually knew it was his birthday, we officially celebrated his birthday yesterday and he was so happy, he jumped inside the jumping castle, he played with the other children, he was trying to run and he "tried" to blow out his candles. The most exciting time for him was opening gifts, and since he received mostly cars-which are his favorite thing he was just thrilled, he didnot stop smiling. The theme of his birthday party was Sponge Bob which is his favorite cartoon this year, last year it was Thomas the Train. Healthwise he has been good, and by his sixth birthday he will be considered cured from cancer. Thank you all for the birthday wishes!
Jeannie
Monday, July 11, 2005 8:26 AM CDT
Hello to everyone,
I have not updated as usual in such a long time, fortunately it is because our lives are almost normal now and not to many things are occuring with Nicolas. He has been doing great, is always happy and smiling, I think he is the only one that does not get in a bad mood in our house. I have reduced his medication to every 4 days now and seems to be doing fine on a lower dose. He still falls alot and he has to be watched constantly. For some reason he does not feel pain like we do. For example, he hits himself sometimes so hard that would probably make me cry and yet not a tear is shed by him. He had an accident a couple of weeks ago, somehow a picture frame fell down and broke in his room, the glass broke on it and my other two children did not go near it, but Nicolas did, he came to show me that one of his hands was red, I immediately saw that it was blood and got all nervous since it was alot of blood, without exaggerating it looked like something out of a horror movie. Not once did he cry, it was as if he didnot feel it, there was a total of 8 slashes on his hand, I finally got the bleeding to stop after 15 minutes of applying pressure. The lesson learned by me was that the children must always be watched, when this occured they had all gone to Nicolas's room and were playing in there. Nicolas is especially prone to an accident since he won't cry if he hurts himself. Other than, that not much else has happened and we spend our days home without going out much. It is too hot during the day to go out anywhere. We have a doctors appointment at the end of this month and another next month. Hopefully we will get nothing but good news!
Jeannie
Sunday, March 20, 2005 2:45 PM CST
Today is a wonderful day because it is the first day that Nicolas is feeling much better and I was finally able to give him a dose of Prednisone. Unfortunately, he did not get better from the last time I wrote on the contrary he had a fever of 102 on Thursday and it continued until Friday, after the second dose of the antibiotic he started feeling much better. My other two sons got the same cold but it only lasted three days for them, Nicolas has been sick for more than a week now and I was actually worried since he was not getting any better. He is still very congested and has a cough but he was hungry today which is always a good sign, he has not been eating much this past week and looks like he may have lost a pound or two. The shaking is worse today, he can barely keep his balance, but hopefully with the Prednisone he will start getting better in that area to.
Jeannie
Wednesday, March 16, 2005 9:33 PM CST
Happy St. Patricks Day,
I finally had a chance to update on how Nicolas has been doing, ever since my computer monitor stopped working I update less and less. Nicolas has been on Prednisone for more than a month now, he is still has the tremor but I think it is much less noticeable than before, he can do alot more things now and is overall much happier. Unfortunately he got a bad cold over the weekend and has had much more tremor at this point. I have not given him the Prednisone because of all the other cold medications he is currently taking. Oh how I wish this had never happened, I wish so much that one day I will wake up and that Nicolas will suddenly not have the tremor and that he can talk and just do all those things that a normal 4 year old could do. "Wishful thinking," and I know I should be thankful that he is one of the "lucky" ones as our doctors tell us, since he is still in remission, but this condition he has can be so disabling at times, and I can see that he wants to do so many things but he can't, and he gets so frustrated. He still not talking, and although he seems to want to communicate he just can't get words out yet. He does understand alot of things but he just yells and makes noises or points to things to get what he wants. I think I "mom" needs to sleep, I have been up most of the night with Nicolas these past two days, his coughs makes him throwup so I have to clean him, bathe him and wash his crib and carpet, and at 3:00 in the morning I can barely keep my eyes open. I just pray that I continue to have the energy and strength to take care of my Nicolas, because he is the one that requires the most help, especially at home where he still falls alot since he likes to try and run, but I'm always worried he might hurt himself because of his balance. Well I think I have vented enough, and I hope that tonight I get at least 5 hours of sleep which would be wonderful!!
Jeannie
Sunday, January 30, 2005 4:06 PM CST
Hello to everyone,
Many things have happened since I last wrote, for one we finally saw the neurologist and Nicolas has been put on an even higher dose of Prednisone from the last time he was on it. He will be taking 60ml of Prednisone on alternate days, hopefully this will produce a quick remission and then we can begin the tapering process. Last time it took a year and a half before we successfully weaned him off. He relapsed after being vaccinated. The only concern will be all the side effects Prednisone causes. He has had 3 doses so far of this higher dose and he is already walking better, a little straighter. It had gotten so bad that he was drooling and didnot want to do anything. The doctor wanted to try Cytoxin or one of the other Interferon drugs but I said no. Ivig still remains a possibility for the future but that requires a 2-3 day hospital stay, and that is not something I look forward to, since the last time we did IVIG it didnot go to well. AZTH injections were also discussed but due to the bad reaction he had last time we agreed that Prednisone Intensol worked the best last time and we would use it again. Since yesterday he has been in an extremely good mood. I came down with a cold and have been worried that I might get him sick, since the doctor told us to try and keep him away from sick people since this higher dose of Prednisone will really immune suppress him, but this is the only alternative we have at this point. We can't leave him without medication, since we really don't know if the further attack on his brain from this syndrome will cause further damage. On Tuesday we are seeing the new oncologist and hopefully that will all go well. There is always that fear of what if the cancer came back but I praying it has not. I actually thought it had since the relapse was pretty bad, and we were told that the syndrome would come back if the neuroblastoma did, but he is responding to treatment, and it is my understanding that when the cancer comes back the syndrome will not respond to treatment. As long as the cancer does not come back I can relax and we will just deal with its aftermath which is this rare syndrome!
Jeannie
Friday, December 31, 2004 9:57 PM CST
Happy New Year,
It is hard to believe it will be 2005 in just 2 more hours, so much has happened, Christmas was great, we had a very nice small Christmas gathering at my house this year. Nicolas got lots and lots of gifts, unfortunately he had gotten worse from the obsoclonus/myoclonus syndrome and the nystagmus started on christmas day, it was really bothering him and he was trembling alot, he must hit every wall when he walks, and he has hit his face three times and has two cuts on his face. I get frustrated because I can't keep him in his crib all the time which I been doing to keep him from hurting himself and I can't be after him 24 hours a day either. He was having lots of trouble sleeping to, because of the muscle spasms he gets. Finally two days ago I was so desperate that I called the doctor and got the ok to begin prednisone again, but at a high dose every other day, he has had two doses and although the shaking is much better the nystagmus is gone. Thank God for that because it really bothered him so much, hopefully within a month his immune system will be suppressed enough that he will not have so much of the tremor-I'm praying for this to happen and then hopefully with time we can wean him off again, one day at a time-will see what happens!
Happy New Year to all!
Jeannie
Monday, December 20, 2004 12:07 AM CST
Merry Christmas,
Five more days for Christmas, how quickly this year seemed to go by, we are all looking forward to christmas eve when we get to set out all the Santa Gifts. School is out and Nicolas got to go see the Polar Express, I know he enjoyed it because he was very quiet and sat in his chair, when something does not catch his interest he will not stay still. He also went christmas caroling with his school, and although he could not sing in words he participated in his own language, and really enjoyed watching him. He has been so happy this weekend, and the reason is because he has been making his younger brother eric cry constantly. See Nicolas has figured out that he is bigger and stronger than eric so therefore he takes advantage of this by taking everything eric is playing with away from him, and he pushes him around to and pulls his hair. The advantage eric has is he can run away from nicolas and nicolas falls down when he trys to catch him, but this is usually not the case and eric is bullied by nicolas so he just crys so that I will save him. My older son and nicolas are best friends right now and nicolas is just hugging him and holding his hand, and follows him constantly so that little david will read to him.
Christmas shopping has finally been finished, next year I will do it in November because there was just too many people at the mall, and I really don't like to shop with such big crowds, but I finshed on Saturday, now I just have to wrap them and prepare for our christmas eve dinner which will be held at my house this year, we usually do it at my moms house. I don't know if Nicolas really understands it but he knows something is going on, my oldest son is the one who can't wait and wrote his letter to Santa, and he asked for a tv, vcr and a dvd for our room-when I was little I only asked for things like a doll, or a coloring book - how times have changed!!
Jeannie
Wednesday, December 8, 2004 1:03 PM CST
Hello,
These past couple of days have been much better, first of all although Nicolas still has the tremor, he has been much happier, and is playing and fighting with his brothers again, being naughty too, which is always a good sign with Nicolas, he is smiling alot, and is even dancing again while holding on to the couch, so of course that makes me happy as well and I have felt much better, I'm not going to be depressed anymore, not only is it not helping any but I'm not helping Nicolas, so as usual I will just take it one day at a time. I'm almost finished with school which is great, I have finals this week and the following week and then the semester is over, which means I can dedicate more time to my sons. Christmas is almost here, and like my children I can't wait, my biggest thrill is to go shopping for the "Santa" gifts, my oldest son is the one that is so excited at the idea that Santa will be bringing him gifts, first he said he wanted another baby brother and I kindly tried to explain to him that Santa could not bring him a baby brother, only mommy can, and of couse "mommy" is not planning on adding to the family so he was a bit dissapointed but quickly changed his mind to wanting a TV for himself. I thought it was so cute the way he asked for the things-the innocence children have, to bad it doesn't last, they grow up so quickly. Nicolas is supposed to take a picture with Santa Claus today at school, I hope he does not cry, he might-I just don't know since he has never seen someone dressed up as Santa.
I'm currently trying to teach Nicolas numbers at home, he is still have trouble recognizing the command when I ask him, for example, for two glasses, three glasses and so on. Since it is all about repetition perhaps in a couple of weeks he will begin to distinguish the concept of 1, 2, 3, etc. He does recognize the numbers on paper-some of them, but I want him to be able to show me two fingers when I ask him. We practiced last night for 30 minutes until he looked like he had it with me and the numbers I was showing him. So I went ahead and let him watch TV and then it was time for him to go to bed, last night for the first time he slept through the night, when he has the myoclonus you can see the muscle spasms he has while sleeping, his legs are not still, neither are his arms, so this wakes him up, and he starts to cry and I always get up with him, this has been going on for about two weeks now, but last night we both got to sleep through the night.
Which was great-I got 7 hours of sleep and that is a relief!
Jeannie
Friday, December 3, 2004 5:20 PM CST
Hello to everyone,
I hope everyone had a great Thanksgiving, ours was great, we spent it first at my mother in law's house for lunch and then we got together with my family at my mother's house. Needless to say I do not want to eat Turkey for a while. We ate left over turkey for a whole week.
Nicolas got sick with a cold the day after Thanksgiving, and as usual a simple cold got worse and worse with each passing day, a week later and he is still sick but he is finally recovering. Sunday and Monday were the worst days, he was up half the night and he threwup twice that night since he couldnot breathe, so just as him I didnot sleep much, I was washing his favorite blanket at 4:00 am on Monday night-he won't sleep without it, it became a confort item ever since he first got sick 4 years ago and to this day he drags it around the house and he has to have it when he goes to sleep, it is also the blanket he uses during his MRI checkups, so as you can imagine it is falling apart and no longer looks like what it was a Blanket. He has relapsed pretty bad from the Myoclonus syndrome, the only good thing is the nystagmus has not come back, but the tremor is back never like the first time but enough to cause him problems when eating, he can't hold a spoon, holding a pencil, basically anything that requires coordination he is having trouble with it. I'm sort of doing the things I used to do with him when he was a baby, he can't eat by himself right now so I have to feed him on my lap, bathing is problem right now to, the tremor makes it very difficult for him to sit still in the bathtub so I have help him constantly so he won't hit his head, it has become more difficult for me since he is much bigger and heavier than he was 4 years ago, he weighs 39 pounds which may not sound like much, but for me it is, 86 more pounds and he'll weigh as much as me, so by the time he weighs about 50lbs I won't be able to carry him, I can't carry my oldest son anymore. I worry about that because he just wants to be carried, and I don't blame him, it must be awful to have a constant muscle contraction that you can't control, and since I know his condition has no cure it can only be controlled, what am I to do as he gets older and everytime he has a relapse it disables him and he needs my help. Oh well nothing I can do about it worrying, it would be nice to have a good night's sleep and not have to think of all the what if's?
Unfortunately I won't be able to begin Prednisone again until February, so I have to wait and just hope that it will subside a bit, it never did the first time around, the only treatment that worked was the steroid and I hate the idea of going back on the medication with all its side effects, but I know that Nicolas is frustrated not being able to play with his brothers, and when he holds something like a spoon to eat he gets so angry he just throws it across the room, he wants to run after his brothers but he can't anymore he falls down to much, and he ends just laying on the floor crying or just watching tv not wanting to participate in anything, and yes this is very depressing to see, but I have to think it could be worse-but then part of me says it could be so much better. I put the Christmas tree up and my children helped me put up the ornaments, Nicolas tried but the tremor would not let him control the movement to put it on the tree so he got very mad and began to cry, he just lay on couch and watched us. I really wanted to include him but he just could not participate with us, but of course most of the time regardless of everything he is happy and smiling. I just hope that by Christmas he will be better that way he can open his own gifts from SANTA, he loves to open gifts. Well hopefully the next time I write things with Nicolas will be better, and my journal will be happier, but lately I haven't felt very happy, its hard to be happy when you know the most precious thing to you his suffering and feeling so miserable!
Jeannie
Friday, October 29, 2004 7:37 PM CDT
Happy Halloween,
This has been exciting week that is still not over for all of us. Two of the children have had there Halloween carnivals this week, I missed my oldest son's carnival because I had class, but I did get to go to Nicolas's carnival and we all had a great time, of course our oldest son is the one that has enjoyed it the most so far since he is the one that understands the most. He had his parade today which I really enjoyed. We are all looking forward to taking the children trick or treating this Sunday.
Nicolas did get his immunizations, and unfortunately just as the doctor had told us his myoclonus has relapsed, but the nystagmus has not, I was mostly concerned about the nystagmus relapsing since I can only imagine how it must be to see when your eyes are constantly moving, and since he is older now I think it would bother him alot more than when he had it as a baby. He is having more and more trouble walking, he is falling alot at home, but I'm keeping my fingers crossed that as soon as the immune response settles down his coordination will get a little better. I got a bit depressed about the situation for a couple of days, and was going back to the way I was when Nicolas first got sick, basically just feeling sorry for myself, but I decided that this is not the attitude to take since I'm not helping Nicolas by acting this way, he usually so happy and I just love the way he hugs me at night with so much love and he gives me so many kisses, he is the one that got me thinking that I shouldnot be sitting at home wondering "why me", instead I just have to help him get through this. Other than this everything is great, Nicolas is making the B sounds when he sees butterflys and bugs, he loves it when I read to him the story of "The Kissing Hand" a really cute story about a family of racoons, he is nodding his head yes when he wants something, so although the progress is very slow there is some of it and that is what counts!!
Jeannie
Friday, October 15, 2004 10:34 AM CDT
Hello to everyone,
Today is not a good day for Nicolas, he will finally be getting vaccinated, he has been off Prednisone long enough, and the doctor has given the OK for him to receive them, I cannot deny that I have been worried all this week about him getting vaccinated, his cancer doctor informed us the last time we saw him that there is a good possibility that he will have a relapse from the Obsoclonus Myoclonus syndrome since the shots will trigger an immune response which will trigger more shaking and the eye movement, so I'm really worried about that because that will be a step back but at the same time it is very important that he get these shots, other than this all is well, our insurance will not cover the damage to the interior of our room that we had from last week's rain, according to them their has to be a hole in our roof for the insurance to pay for the damage, oh and the water from the rain can only come in from the hole and not the walls of the house. So we will have to pay for our own repairs.
My new goal is to start working with Nicolas like I used to when I was trying to get him to walk, I feel I have not dedicated as much time to him since I began school, I really do make an effort no matter how tired I'am to read to both him and David bedtime stories when I get home and I always sit down with David and do his homework as well, but I'm usually rushed and I know that especially with Nicolas it is all about time and repetition. The other night I could not sleep worrying about "what if he never talks" or what if something were to happen to me and who will take care of him since he depends mostly on me more than he does my husband. But I'm going to try and start not to think like that, I did it alot when Nicolas was first diagnosed. I would spend countless hours at night either crying or just stressing myself to the point of being up half the night, and lately I have been having trouble sleeping again. When Nicolas turned 4 I couldnot help and wonder what if nothing had happend how would he be as a normal 4 year old, how he would be talking by now.
Nicolas is getting older but I know that his speech and motor skills are very delayed and he doesnot like it when I force him to do things, and he gets very sad when I discipline him but I know I must stop treating him differently than my other two sons, he must be treated like their is nothing wrong with him. Well I think I have vented enough about all of my frustrations and worries. I sure did write alot this time. On one last note I want to THANK Nicolas's teacher and both his aids for being so good to him at school, I know they are treating him really good because Nicolas's just loves to go to school and if they weren't doing such a good job with him he would not want to go, Nicolas does not go with just anyone he has to feel that you care for him!
Jeannie
Friday, October 8, 2004 9:16 AM CDT
Hello to Everyone,
We have all had an interesting week at our household, let me begin by our adventure on Tuesday Night, we had alot of rain that night, and we were under a flash flood warning, it began around 2 am, I had just gone to bed at 1:00 which is my usual bedtime hour lately, needless to say I had just fallen asleep when I was awakened by a constant drip, I woke and discovered the drip was coming from my ceiling and it was a slow drip, I realized how hard it was raining but I couldnot understand why it was coming in when our roof it is only 3 years old. To make a long story short, the slow drip progressed to the ceiling splitting open (literally) and it raining inside half of my room, fortunately I reacted quickly and placed buckets, plastic liners and trashcans to contain the water, so our carpet didnot get wet. Our garage also filled up with an inch of water, the thunder woke up Nicolas and Eric, but I was able to get them back to sleep, my oldest son had to be moved out of our bedroom since the rain in our room was getting his bed wet, my husband and I rearranged the furniture so it would not get wet, other than this adventure all has been the same.
Nicolas is doing great, the only thing I have noticed lately is he is really uncoordinated, he does not walk straight rather he goes in a zigzag motion, and he falls alot in our house, I have to watch him when he is playing with his older brothers because he doesnot look where he is going and will walk into doors, he is not shaking or at least I don't notice any of it, and his eyes are fine it is the walking. But his health is great so far and that is the most important thing of all. I hoping that as he gets older and understands more perhaps he will be able to balance himself better, we are going on 4 months Prednisone free and he has grown alot since, I'm starting to have trouble carrying him, and his appetite has increased alot, to think I used to have to force him to eat in the past, now it is the opposite he doesn't fill up! How times have changed!!
Jeannie
Friday, October 1, 2004 3:03 PM CDT
Hello to everyone,
Thanks to all who wished my Nicolas a Very Happy Birthday, we had a great time on Sunday, we celebrated by having a small birthday party for him at Peter Piper Pizza, it was just family from my side, we had a cake and he got lots of gifts, mostly car toys since those are his favorite thing at this point. On Tuesday his grandmother on my Husband's side of the family organized a small party for him, unfortunately I missed most of it since I had to go to school. I was a bit upset about that since I didnot want to miss it but I had to go to class to take the quiz that day. Needless to say Nicolas has been spoiled rotten all weekend, he even got to stay up on Tuesday and watch Tom & Jerry at 10:00, I usually turn off the TV at that time, if not he will stay up until 1:00 am if you let him. All is well and we are looking forward to a nice weekend!
Jeannie
Saturday, September 25, 2004 8:49 AM CDT
HEllo to Everyone,
Finally I get a chance to update Nicolas's website, between getting the children ready for school, doing household chores and going to school myself I seem to never have time for anything I surprised I even have time to get ready myself, I guess that is why I have become the most frumpy looking mom out there! Anyways to more important things Nicolas is about to turn 4 years old on Tuesday which is an extremly joyous occasion for all of us, just the fact that he made it considering what he went through, and this means two more years and he will be cured from Cancer. Since it falls on a Tuesday this year we will celebrate by taking him to eat at Peter Piper Pizza which is his favorite place to go to. Right now he has a cold but he is finally getting over it, actually all the children got sick, but my husband and myself were lucky enough not to get sick(this time). Healthwise everything is great with Nicolas, and I think he is saying the word car, and bye it is just hard to understand him, but he is trying, and he is no longer crying at school in fact he loves to go again and even when he first got sick with his cold he started crying and crying because I told him he could not go. SO we are slowly making progress!
Jeannie
Friday, September 3, 2004 5:07 PM CDT
Hello to everyone,
It sure has been a long time since I last updated, it just seems that everyday I have less time to do anything at all. School has started for all of us. Nicolas is back in school and after crying for about two weeks he has finally adjusted and is really happy to go in lunch when I take to school. My oldest son has also started school, he is now in kinder, and I also started last week and it has been a bit difficult since I have to leave everyday at 5:45 p.m. to class and don't get home until 8:50 p.m. and I miss out on reading bedtime stories to my oldest son. Nicolas is always awake when I get home since he does not go to sleep until 11:00 p.m., and he wakes up at 11:00 a.m. the next day.
We saw the oncologist last month and everything went great we are now going to be seeing another oncologist for followup care, Dr. Shaw ( the new doctor) only see patients who are either cured from cancer or have passed the most critical time of relapse. This August it was 3 years since he was diagnosed with cancer. The scare we had when his blood counts dropped were due to the virus he got, he had several tests done last month with the oncologist and everything was normal. So all is well, we just need to continue working with him to improve his gross motor skills, and his speech, and hopefully soon I will be able to update this website and write down the first word Nicolas said!!!
Jeannie
Thursday, July 15, 2004 2:27 PM CDT
Hello to everyone,
Nicolas's got sicker than from when I last wrote, he got very dehydrated and I took him to see his pediatrician, she wanted to admit him to the hospital at that time but I wanted to wait and see if with the shot they gave him he got better, but he didn't he threwup another 5 times, so I took him to the hospital and we was admitted. Eric on the other hand got well immediately. We got so scared on Monday when we were let out from the hospital because his White blood cell count went down to 700 and the doctor said if they went down to 500 the following day when they checked him they were going to have to call the oncologist. Needless to say last night was the first night I got to sleep, I have been so WORRIED-nothing but bad thoughts were crossing my head, we had the blood count done yesterday and THANK God they had gone up to 2000, Big relief, he did loose 4 pounds throughout this ordeal but he is slowly recovering, he looks pale and thinner but today he woke up and was walking better, he had been so weak that he had trouble walking. The nystagmus was on and off but never like in the past, today I have not seen it so finally we are having a normal day, Nicolas is fighting with his brothers so I know he is feeling much better!
Jeannie
Sunday, July 11, 2004 2:32 PM CDT
Hi everyone,
Nicolas has been so sick for the past two days, he has been throwing up nonstop, he started with loose stools today. I have to say that I was very worried about this, I was worried because anytime Nicolas begins to vomit I have the flashbacks of the first symtoms he had of cancer, which the doctors thought was the formula causing the vomiting he was switched to every formula on the market, and of course none stopped the vomiting because that was not the cause it was the tumor, which we found out 8 months later. Anyways I immediately thought this was the case again especially since I noticed some nystagmus of his eyes(I know I think the worst but it is hard not to after having a battle with cancer)and I know we are not out of the woods yet, he won't be officially cured until two more years from now, but today his younger brother Eric began vomiting just like Nicolas, and I was very happy since now I know it is probably just a rotavirus. This is such a RELIEF, I can sleep now, I was SOOOOO worried, I NEVER want to him to have a relapse, I always ask God never to give cancer to my child again, give it to me instead, I rather get sick than see my baby suffer like he already has! Alright enough of my venting, its just my nerves get the best of me at these moments and since I have not had much sleep that does not help! Excercising is my stress relief but I have not been able to since I have been caring for Nicolas. We see the oncologist next Monday-I just pray the everything continues as well as it has been. Please let us all remember never to forget to pray for all those young and old battling any type of disease or problem!
Jeannie
Tuesday, July 6, 2004 7:46 AM CDT
Happy Late 4th of July,
This has been a very long weekend for all of us, Nicolas just wants to be out. On Friday he went out with his father to the grocery store, on Saturday the day began by us going to Mcdonald's for breakfast, that same night we took him to dinner and to see the firework display at the lake here in out town. On Sunday we also went to see the firework display, so he has been going to bed at 2:00am everyday and we are all worn out, but Nicolas he loves to be out, he really enjoyed the fireworks he was not even scared. I finally finish school on Wednesday, it sure has been hectic nothing but tests, but since it is the summer session and very short I new it would be like this, but so far I've made nothing but A's, I had to get used to studying again since I had not done it for 3 years, I quit when Nicolas got sick.
As far as the potty training goes that was ver unsuccessful, so I'm going to wait to try again, he can finally say the letter "O", I have been working on him with pronunciations, but it is difficult for him. Well I hope everyone had a great 4th of July and blessings to all!
Jeannie
Friday, June 18, 2004 4:48 PM CDT
Hello everyone,
A quick Nicolas update, I have been unsuccessful with the potty training and have come to the conclusion that he is just not ready, since he still does not speak and he still does not understand alot of words, my 2 year old is not ready either but he does understand that is where he is to go to the bathroom he just won't do his necessities there. Nicolas has had so many accidents, and since he doesnot want to sit on the potty he now just nods his head no everytime I ask him if he has to use the restroom, he used to point to his diaper when he needed a change but now he won't even do that, so I have stopped trying for now since Nicolas was so unhappy and now he is back to being a happy child. I have been successful with the weaning of the bottle, he now understands that he only can have it at night and does not fuss anymore. So now all the children are happy! Blessings to all!
Jeannie
Friday, June 11, 2004 3:03 PM CDT
Hello to everyone,
Nicolas has finally gotten over his cold, it took over a week for him to get over it, he got the rest of the family sick including myself. We have officially began to try and potty train him, whichhas turned out to be a difficult task, seems almost impossible at this point but then again when I was teaching him to walk it took lots of time and patience, I used to spend hours and I mean at least three hours bent over holding him forcing him to walk, at the time he was terrified to try and walk since he had no control of his balance so I had to hold him up while he tried and to walk. I remember how much my back would hurt at night but the day he let go it was a dream come true for me and that is when I knew the time I spent paid off. Now the bathroom thing is not as hard on my back but he doesnot want to use it, and to top it off I have taken away the "bottle" and replaced it with a cup which he is not to happy about. I'm also taking advantage since I'm potty training Nicolas to try and potty train my youngest son Eric. He seems more interested in using the small bathroom I have set up for them than Nicolas is. Our days are spent home since it is hard for me to leave the house with three little boys, I'm going to night school at night everyday except the weekend so that is the only time I can leave the house. I have taken the boys outside to get in the pool, Nicolas was scared at first but then after he realized how much fun it is doesnot want to get out. He does get bored at the house alot, I know he really misses school, he has not forgotten and we don't there mention the word because he rushes to the front door and then has a major tantrum when we don't take him anywhere. Next month we will be seeing the oncologist, whom I'm sure will be surprised to see how much Nicolas has grown!! The doctor had been very concerned about his size back in January when we saw him. A couple of months ago he was using a size 2T now he uses his own size 4T, he has grown so much ever since we stopped the steroids, this was stunting his growth, and he sure does eat alot now, but of course he only wants to eat Junk Food, happy meals from Mcdonald's are his all time favorite with Pizza coming in as his second favorite food. Well, will see how this adventure of the "bathroom" unfolds, I sure hope I can get Nicolas to accomplish this before school starts, he can be very stubborn, and right now he does not want to use his little bathroom!!
Jeannie
Monday, May 31, 2004 2:06 PM CDT
Hello everyone,
Summer has begun, and it sure has been hot down here in Eagle Pass, I believe it was 105 yesterday, that is what the temperature read at our local bank. Nicolas is out of school and he has not been very happy, he came down with a pretty bad cold on Friday, and has not gotten over it, yesterday he felt a little better and wanted to leave the house. He saw me get the bag I used to use to take his snack and milk to school, with me, but I was taking it for his little brother instead, (we were going grocery shopping)and he immediately got up and brought me the car keys and almost ran to the door, when he realized he was not going to school he through a major tantrum, he doesnot understand he is on summer vacation yet, but we distracted him by taking him out later that day to watch his brothers play in the swimming pool. We didnot let him get since he is sick. Today he was in a better mood, a bit bored but as soon as he gets better I have lots of activities planned for me and all the children, outdoor activities. We had a small birthday party for my oldest son on the 25th and Nicolas really enjoyed himself so much outside, last year he was still using a walker on my son's birthday so he didnot really like the party, but this year, he played with all the other kids and played with the dirt, got to eat with us and just played and played, he was exhausted by the time we came in! Potty training is set for next week on Monday, I'm giving him a break before we begin, I'm also going to wean him off that bottle, which will make him very unhappy!! New photos have been posted of Nicolas.
Jeannie
Monday, May 24, 2004 8:30 AM CDT
Hello everyone,
Tommorrow is David's birthday, Nicolas's older brother, he will be turning five. Yesterday was my birthday I turned 29 and we all went out to eat, which we don't do very often, and after yesterday I know why, it turned out to be quite an adventure, Nicolas and Eric had spagetti and they decided it would be lots of fun to start throwing it at eachother and at the same time smear it on their faces. They also spent most of the time fighting with each other so we had to separate them, but then they both started to cry since they wanted to sit together. The floor underneath the table was not a pretty site, I felt bad for whomever would have to pick up the MESS. Eric was given a crayon by the waiter and decided it would be more fun to write on the table instead of the paper he had. Nicolas saw this and decided to copy Eric. We took their crayons away and they both started screaming and crying. They are very well behaved when they are alone, not with each other. My oldest behaved very well. Despite all of this we had lots of fun. I also took my older son to see Shrek two on Friday which he really enjoyed. Nicolas really enjoyed going with his class to see Clifford. I know he also enjoyed the bus ride, as soon as we see one driving on the street he begins pointing at it and yeliing at it.
Three more days left for school, Nicolas's is sure going to miss it.
Jeannie
Friday, May 14, 2004 8:55 AM CDT
Hello everyone
I want to start by saying Happy late mother's day to all the mothers out there. I had a very nice mothers day spent it at home with the family.
Nicolas is going on three months Prednisone free, it seems longer than that but I checked my caledar and it is almost three months since his last dose. He still is clumsy when he walks and is not as coordinated as all of us but he tries and tries to be more independant and is now trying to eat by himself with a spoon, he gets angry when I try and feed him. Most of the food ends up on his lap but the important thing is he is really trying. He can now chew most food but still as trouble with meat or chicken. He ate pureed food until he was three so this is another accomplishement. He is trying to speak but still is the most delayed area, my two year is now saying words and Nicolas tries to imitate him but had lots of trouble with speech. I was amazed to see him finally be able to recognize the difference between red, orange and green and he can now point to the correct color when asked. Same for some numbers. He has learned all this in school, which has turned out to be the best decision we made for him. He really loves to go to school, and he even got to ride on the bus for a trip to the Pizza, and on Tuesday of next week he will be going with his class to the movies. School is out in 10 days, and during the summer I will be dedicating myself to trying to potty train him and also to see if I can get him to say atleast one word. His next checkup with the oncologist will be in July, I always dread those appointments. My other two children are getting older, Eric the little one is extremly naughty, and little David the oldest is my little helper, he thinks he is the mom to Nicolas and Eric. David will be turning 5 in about two weeks, he is all excited that he will have a party and of course receive lots and lots of gifts!
Blessing to all
Jeannie
Thursday, April 22, 2004 8:27 AM CDT
Hi all,
Hope everyone had a great Easter, we sure didnot it was a cold rainy day here in Eagle Pass, we were unable to go outside and have an Easter egg hunt. We had to set it up for the following weekend.
Nicolas is doing great, he came down with a cold but is all well now, he continues to improve, he has been off Prednisone for almost two months, another major accomplishment, when he got sick we noticed a bit of nystagmus of his eyes, and he was more shaky, but as soon as he got better the eye movement dissapeared, he is still a bit clumsy when he walks, but he is doing it all by himself and even trys and runs. He looks the funniest when we play music and he starts to dance! It is a funny sight. He usually very happy, and is fighting more and more with his brothers. Sibling rivalry. He fights most with his two year old brother. He is still not talking but he sure is trying and is communicating more with hand gestures. He also seems to be gaining more weight, ironically while on Prednisone he was usually underweight, Prednisone gave him lots of heartburn and he would vomit often. He is not vomiting anymore, but he is still small for his age although he is growing, and is getting heavier for mom to carry him, the good thing is he wants to be more independant and usually doesnot want me to help him or carry him!
Thanks all for your easter wishes!!
Jeannie
Friday, March 5, 2004 1:51 PM CST
Greetings to everyone,
Today is cowboy day at Nicolas's school, they will get to ride ponys, horses, etc. Our local highschool FFA group brought the animals to Nicolas's school. It will be an exciting day for all the children.
On another note so far so good nothing has turned up in the urine so that is a goooooooooooood news!!! I was worried about that. I don't even like to think that the cancer may come back although I know that is always a possibility.
Back to the school activities, Nicolas's had to take a hobby horse for a contest that the school had this morning and he won third place, he still doesnot understand why he got the medal but it was exciting!! He continues to do so good and got an award last week for the most improved student in his class, he also received his report card. Although he still does not talk, every day he seems to comprehend what we are saying more and more. He seems to try and say words he just cannot pronouce the words. There is of course lots and lots to learn. The neurologists said he is doing great and reduced his Prednisone some more. He is not shaking as much but does have a bit of trouble with his coordination. I say a bit since it is not as bad to stop him from walking, he just falls alot more than your average 3 year old. He is not having any problems holding a pen he can scribble and hold it still, before his hands had a constant tremor-not anymore!!
Nicolas's younger brother Eric will be two on March 14, but we probably won't make a party until the oldest turns 5.
Blessings to all
Jeannie
Tuesday, February 10, 2004 8:49 AM CST
Hello to all,
I had not had a chance to write in or even check in, with the two of the children in school it sure has been hectic. Nicolas has been doing great. We saw the oncologist already the only thing that has me a bit worried is that we have to repeat his urine test, they check his urine for some catecholamines (I think that is how you spell it) that the neuroblastoma secretes in the urine. We are going back on February 20, we are also seeing the neurologist that day. I was saddened to see so many new patients that had been diagnosed with cancer, many were just 2 month old babys already receiving chemo. The oncologist told us Nicolas looks great. The only concern at this point is his growth and development. We may have to see an endocrinologist(don't know how to spell this one for sure) if he does not start growing, his growth is being stunted from long term use of steroids. He is not speaking yet but is very vocal, and he is thriving in school, he absolutely loves going. Yesterday he didnot want to come home with me. On a sadder note nicolas's great grandma has cancer and is doing really bad, please pray for her. My other two sons are getting bigger and bigger, baby Eric will soon turn two, The Terrible Two's which I think he is going through prematurely. Nicolas loves to fight and make him cry, but he is also a very affecionate boy and is always smiling, there is going to be some Valentine Partys and both Nicolas's and David's (his older brother) school, I have to bake 40 cupcakes!!! AHHH
Happy Valentines Day to all!!
Jeannie
Friday, January 2, 2004 2:57 PM CST
HAPPY NEW YEAR TO ALL!
We had great holidays this year, since is the first year that Nicolas is doing so much better, of course like any child he has his moments. We spent it with my inlaws and my parents and also with family and friends from out of town. All three kids-Nicolas, Eric and David have come down with the flu-it is like we all live sick with colds or some viruses. Nicolas of course is the most vulnerable to any little bug because of the Prednisone. We went all out getting the boys gifts from Santa, I'm not sure how much Nicolas truly understood-he is three but still does not speak he sure seems to understand more and is showing more of his personality-gets mad at us all the time and he is spoiled rotten and spends most of the day fighting with his younger brother-they are like twins, Eric is 1 and 9 months but they act the same, and are almost the same size since nicolas is small for a 3 year old! They are fun to watch playing. School starts on the 6th for us. We are going to see the oncologist on Monday-we have to drive 3 hours, I just hope we continue to get good news-no cancer!! Our family friend died from cancer a week after we saw her-another victim to cancer! Lets continue and pray for all battling cancer and other illnesses!!
Blessings to all!
Jeannie
Monday, December 8, 2003 2:13 PM CST
Hello all,
Nicolas continues to do great in school, he has finally adjusted and is not crying as much. I do have to take him in a stroller because not only does he hit his head to the point of cutting himself when he does not get what he wants, but I have also reduced the Prednisone more and he is a bit shaky and is falling a bit more. I hope everyone had a great thanksgiving, this is the first year Nicolas was able to join us and eat a little bit-not the turkey though he is still not ready for that type of chewing, and although he still does not talk at all he is truly amazing us since he is understanding more and more and is showing much more emotions towards everything and he even points to what he wants and is beginning to imitate us. School was a very good idea.
On a sadder note a loved one from our family is dying from cancer-I never seen what cancer does to you towards the end. I got to see her on Thursday of last week and I could not believe how emaciated she looked, I hardly recognized her, she has lost so much weight she is dying and only has days to live, I felt so much anger towards this disease, because of the suffering it inflicts on the person with it,please pray for her that she stop suffering, she can no longer walk or talk. I just want to vent my anger towards cancer and all diseases I hate them, noone whether young or old should have to suffer, I began to worry since we have to see the oncologist in January to see if Nic remains in remission-I just imagined what if the Cancer comes back-I'm not strong enough to cope with that-well I must stop before I cry, I wish everyone a very Merry Christmas-We are planning a party and lots of gifts for the kids!
Blessings
Jeannie
Friday, November 7, 2003 11:40 AM CST
Hi everyone,
It has been a while since I update. Nicolas has finally begun Pre-School for 3 year olds. He is in a Special Education class for 3 hours a day. Unfortunately he does not like it very much and screams and cries everytime I leave him. I think he has been giving the teacher a hard time but I'm confident it was the right decision since this will help him become more independant. He also picked up a virus on the third day of school called hand foot and mouth disease, he was in quite a bit of pain since he got blisters in his mouth, hands and feet-hence the name, fever and lots of discharge from his nose and eyes. He is all better now and his younger brother Eric is still recovering, he caught it as well. Nicolas is walking better everyday but is still having trouble with speech. He is definatley beginning to understand more and even points to things he wants, he seems to really want to learn now. He really enjoyed Halloween, we all went to Peter Piper Pizza the day before for the Costume party, and we went Trick or Treating on Halloween, they all really enjoyed themselves, although I did have to carry Nicolas alot of the time since he got tired of walking. THankyou all for your Halloween wishes!
Blessings
Jeannie
Saturday, September 27, 2003 8:33 PM CDT
Tommorrow will be such a special day for all of us. It is Nicolas's third birthday, it is so special because of everything he has been through in just 3 years and so far he has made it through, everyday he surprises me more and more. He is now truly walking more and more and although he still needs alot of practice this is such a special moment for all of us. He is also beginning to eat more and more solid food, slowly making progress it is almost like my prayers have finally been answered, I have dedicated so much time trying to help Nicolas walk and now I see the result. As for the birthday we have a special party with family and friends planned at our local Pizza Place with an Incredible Hulk theme, I sure hope it all goes well. Now that he can eat he loves to eat Pizza and smear all his face and hair with cheese, it is quite a funny site!Thankyou all for your birthday wishes.
Jeannie and Family
Friday, September 12, 2003 2:55 PM CDT
Hi all,
Nicolas continues to do well, he is still getting over a bout with the flu, little David was the first to come down with it I had to take him to the ER on Labor day because he was complaining of severe pain in his throat, it turned out to be tonsilitis which has been successfully treated with antibiotics, but all of us caught it as well, Nicolas is the one taking the longest to get over it, but other than that all is well in our household. He is still crawling more than walking but it is ok, with time I know he will do nothing but walk, he does use his walker alot. I was noticing the other day how small Nicolas is for his age, I'm not sure if it is the steroid use. He will be three on the 28th and he looks more like a two year old. As long as he stays cancer free I won't let the little things bother me anymore. Blessing to all of you!
Jeannie
Wednesday, August 27, 2003 1:50 PM CDT
Hello everyone,
I have not written in a while but lots of exciting things have happened since I last wrote. First of all Nicolas can finally walk across the room unassisted, although he still falls alot and prefers crawling this is the biggest accomplishment yet for him, he is learning to walk with his disability. I have reduced his steroid medication alot so he has some tremor, but I rather he learn with his disability since it will always be there and he cannot be on steroids forever because of the long term health problems associated. The other exiting thing I want ot share with everyone is that he is still cancer free-two years. Two years ago on this day we were barely getting out of the hospital after a month long stay-I can never forget the dates. Nicolas is also learning to eat regular food-he is still having a bit of problems chewing but he is learning and he can eat cereal and crackers, he has been on pureed food since he got sick, the OMS affects the way he eats, his speech is still very delayed but we are working on everything one step at a time!!
Blessings to all!!
Jeannie
Thursday, July 17, 2003 11:44 PM CDT
Hello All,
Nicolas has been doing great, still not walking but getting better and better on his walker. We have an doctors appointments on Monday, we are seeing the Oncologist and Neurologist-Hope we get good news, I'm terrified of those 6 month checkups when they check for relapse of cancer. We continue to make plans for Nicolas to attend at least two hours of school. We should be getting a wheelchair soon, and a bath chair to help me, Nicolas is getting heavier. All of us have been doing great I'm happy to say. Although Nicolas has many disabilities he is truly a happy child and that makes me happy, the goal now is to try and lead as normal a life as possible. Please pray for Nicolas that he continue to remain cancer free!
Blessings and please don't forget to pray for so many children that need our prayers!!
Jeannie
Wednesday, June 18, 2003 11:35 AM CDT
Hi all, it seems like such a long time since I last updated. Well many things have happened since I last wrote, my husband was laid off from work and now is working with my father. We are taking turns babysitting at home. Nicolas continues to really try and walk but he needs alot of help. He has alot of trouble with balance. HE seems stronger but is still not ready for walking unassited. He is using the walker as well. I try and help him walk everyday for at least two hours straight, but it is taking a toll on my back. I have to be bent over is a certain position help him keep his posture, but when he walks all my dedication will have paid off and I will be so happy. THe job loss was not so bad, it is amazing that after an experience like the one we have had with our son, you realize what is so important in life and right now priority is all my children the other little problems will eventually resolve themselves. I have an ARD meeting coming up to decide how much intervention Nicolas will need in school, right now their is talk about him being in a contained room with other disabled children. His wheelchair has already been ordered as well as his special bath chair. He has trouble keeping his balance in the tub so I have to bathe him in an infant tub, but he is a bit to large for it - he is almost three!
We have an oncologist and neurologist meeting next month I hope he continues cancer free-their is always the fear of relapse in the back of my mind - please everyone pray the the cancer never come back!!
We all went out for father's day on Sunday wiht the three boys-we had to leave early because Nicolas was very bad, he threw lots of tantrums. It is usually hard to go anywhere to with all of them, they are only 4, 2 1/2 and 1 so it is an adventure which I wouldnot trade for the world!!
Blessing and prayers to all of you!
Jeannie
Thursday, May 22, 2003 3:58 PM CDT
Hello everyone,
Lots of Birthdays for our family this month. This Saturday we will be celebrating our oldest son David's Birthday, he will be the Big 4 years old. We are planning a B-Day party for him at our house. My Birthday is tomorrow and I will be 28.
Other good news is that the therapists brought over two walkers for Nicolas. I was so happy to see that he is actually using them. He need help since the shaking doesn't help him balance himself to well. THe shaking is slight but enough to inhibit him from walking. He slowly using them and seems to want to walk now. I feel so bad when we take him outside with my other two boys to play, I can see the frustration that he feel since he wants to join in on the fun. I have been taking him with me to the track on a daily basis and trying to get him to walk with me helping him so he can excercise those skinny legs. His speech continues to be the most impaired area, he is just babbling for now. My biggest hope is to see him walk, I cannot wait for that day, that will be one of his major accomplishments. Healthwise he is doing great so far - 2 years cancer free! The OMS is not to active at this point, the Prednisone is working.
Eric the "baby" is constantly on the go, and does that little pint size child have a personality. He is so cute, he is always mad, probably since he is always getting beat up on by his older brothers and dad since he is the target of their play.
Prayers to all of you!
Jeannie
Friday, May 2, 2003 4:26 PM CDT
Hello everyone,
It seems that I updating less and less, I've just seem not to find time to come and update. I usually have to use my fathers computer which requires me to leave my house, and I like to do so with at least only one child, I'm having more and more trouble carrying Nicolas for longer periods of time. He is getting heavier which is a good thing but since he cannot walk I have to carry him most of the time if I take him out. He is almost three, and as he gets older and not walking I realize, that I may have to get a wheelchair for him eventually, unless he walks-which would make me so happy. For now he will be getting a walker to see if he can use that. Nicolas has been doing great, everyday we take him outside-since it is very warm here in Texas. HE realy enjoys this and seems so much happier overall, he smiles and laughs so much, I just love his smile with his dimples. I usually stroll him or push him in his truck, yesterday I took him to the track where I go and jog on an almost daily basis, and he really enjoyed the different scenery, their were some children practicing for track and he was just so concentrated on observing what they were doing.
His baby brother is more and more playful and he is fighting with Nicolas sometimes. Doctor's appt are coming up again in August, Not looking to forward to that but we must go! I hope everyone has a great weekend!!
Jeannie
Wednesday, April 16, 2003 3:22 PM CDT
Hi all,
So many things have happened since I last wrote in, but first let me begin by wishing everyone a Happy Easter. Nicolas is doing good right now, he is back on his medication and is doing much better. He still cannot walk. His baby brother who is now 13 months old has been walking since 12 months. I was really hoping that this would encourage Nic to want to walk but so far it has not, which is a bit dissapointing for all of us, we really want to see him walk, but he has made no attempt and gets very angry when we try and force him to walk. He is still a little bit shaky but despite this he is doing good. He has been throwing some major tantrums and hurts himself in the process, one of his therapists said he needs discipline but I hate to get mad at him I know he is spoiled but I just want to give him everything he wants - which is not good in the long run. Our oldest son is finally potty trained - it was about time it is just he refused to do his potty in the potty. But we are finally past that obstacle and now he is all set to go to school. Were planning a get together for Sunday for the kids, I hope Nicolas enjoys it this year!
Blessings to all of you!
Prayers to everyone
JEannie
Friday, March 28, 2003 3:30 PM CST
It has been a while since I updated, but I must say it was a rough couple of days while Nicolas got better from his OMS relapse. Fortunately the Prednisone has finally taken effect. I was really hopeful that we would be able to wean him off the steroids but I guess that is not possible for a while, he is still shaking but it is much less noticeable than before. He is back to his happy playful self, no more of those awful tantrums, and he is crawling and being very bad, between him and is baby brother, they make a mess, but hey that is what being a child is all about, exploring, getting into things and of course making a mess, I rather have him like this than just laying in his crib without moving.
Nicolas was finally approved for SSI, they have deemed him disabled, I was kind of hoping they wouldn't approve him in the hopes that they didnot see him that bad, but I guess they did. He had been only temporarily approved but we finally got the award letter of his approval. Besides all everything that happened with Nicolas relapse, our life is slowly becoming normal again, when someone is sick in the family it usually causes some changes in our lives. Little David, Nicolas's brother will be starting school this year, and I'm still debating on whether to send Nicolas to preschool so he can continue to receive his therapy. The ECI program that works with Nicolas is trying to get a contract with one of the private schools here in town, and they say if they get it Nicolas will be first on their list to refer him this school. Well see what happens, I really hope it happens so both him and his brother can go to the same school.
Eric the baby - is now a toddler, he has just had a B-day and is now 1 year old. Nicolas loves to play with his baby brother, I love to watch them in action, they follow eachother aroundthe house looking for trouble.
Let us all pray for our soldiers, that they all come home in soon, and of course for all those in need of our prayers!
Jeannie
Wednesday, March 12, 2003 12:01 AM CST
Hi all,
Last time I wrote in I had lots of good news, today things have changed a bit. Nicolas was finally down to taking Prednisone once a week, but he is beginnig to shake again, and today it is worse, he does not want to crawl and has a cough I think he is coming down with a cold again. The neurologist authorized to refill his medication so I have to start increasing the dose again, I really thought he was in remission from it but I guess he still had more medication in his system and now he is beginning to feel that their is hardly any of it. He also threw up Sunday and today, the carpet in his room smell really bad, it penetrated underneath and just cannot get the smell out. hopefull once I begin increasing the meds he will feel better right now he seems miserable, he sits on the couch to watch tv but cannot sit still, he has a slight tremor and I think it bothers him, he is also twitching his cheek-I don't know it is from the myoclonus of his muscles, all the other muscles in his body twitch why should his face ones not-I think it is the myoclonus, they didn't before until I began to wean him off the steroids.
On a lighter note our almost 1 year old baby is about to walk, hopefully this will encourage Nicolas to want to do the same, he loves to imitate what his baby brother does.
Prayers to everyone!
Jeannie
Thursday, March 6, 2003 3:38 PM CST
Hi everyone,
I have nothing but good news to report on Nicolas, first of all although he still not walking or talking the neurologist whom we saw on Monday thinks he is well enough to stop the steroids-Hurray finally my friendly happy little boy will be back, as most parents who have their children taking high doses of steroids-you know the mood swing they can have as a result not the mention all the other side effects. We were so happy to hear this good news. He is acting so much like a toddler it is amazing-he throws lots and lots of tantrums unless he gets his way.
Little David is doing just fine as well he has completly recovered from his broken collar bone is just fighting with his brother. So we have lots of hope now for Nicolas, he is still very delayed but I have high hopes that with time he will catch on, the doctor did tell us he will probably always have a speech problem for this is the most affected area that damage was done by his neurological problem, right now his is also in remission from this. We were also told he is better for his is not drooling anymore, but he still cannot eat solid food, we have to get those muscles strong with some very simple excercises like blowing or even licking an icecream cone. THe walking will come when he is ready!! I can't wait for the day I can write that he has taken his first step. I'm told I should put him in pre-school when he turns three so he can interact with children his age but I'm scared, what if doesn't walk yet will they treat good since he is a bit different from other children his age, but I don't want to what is wrong either, if someone has advice please give it to me!
Thanks all
Lets continue to pray for everyone else who needs our prayers!
Jeannie
Thursday, February 27, 2003 5:09 PM CST
Hi all,
Little David is doing much better after he broke his collarbone 2 weeks ago, he finally got out of bed and is slowly beginning to walk.
Nicolas on the other hand has been extrmly jealous and his throwing some major tantrums. He does not want us playing with the baby and much less giving attention to my older son (David). THe baby is also showing his mad side, now that he is 11 months old he is beginnig ot defend himself from his brothers, he hit Nicolas the other day because Nic took away one his toys. Needless to say the Nicolas was stunned that hte baby slapped him, he used being the bully with the poor baby. It was actually kind of funny to see them having a little fight. So far all is well for all of us!
Jeannie
Friday, February 14, 2003 2:29 PM CST
Happy Valentine's Day,
I hope everyone is having a nice day, we have had an interesting week. Lots of good news and then an accident with my oldest son. David E, who is 3 1/2 and Nicolas's older brother feel off his bed while he was asleep two nights ago. He woke me up at 4:32am crying that he had an "Owie" on his shoulder and neck, I didn't think much of it but after I tucked him in he began to cry alot within 30 minutes. I decided to take him to my room and let him sleep in the spare bed we have there. He would cry while he was asleep and when I woke him up three hours later he was in extreme pain, I was not sure what to think, mom's intuition told me he wasn't exaggerating and I should go to he doctor, I thought it may be a broken bone from the pain he was in, he could not even move and all he did was cry. I was afraid to move him so I called an ambulence, they took us and at the ER was immediately seen, X Rays were taken after he was given a shot of Demerol-which didnot take the pain away completly-he still screamed everytime they moved him. THe diagnosis was a broken clavicle "collar-bone". They put a splint on him and now he is bedridden, although he is in pain and we are giving him codeine, this is the first time that he is being treated like a King and not Nicolas, usually Nicolas is the one getting royal treatment.
ANd he sure does like all the attention!
Nicolas on the other hand is very jeolous that he is not receiving all the attention, and is just throwing some major tantrums, he is acting more and more like a normal two year old, he is very spoiled-partly my fault I love to baby him, I cannot help, I try not to make differences but after what he has been through I just want to cherish every moment with him. One minute he is a happy toddler the next he is screaming and throwing himself back in a tantrum. I'm so glad to see him acting this way, like a child his age. The baby "Eric" who is now 11 months is a very calm baby, but he is into the exploring phase and him and Nicolas love to get into what they are not supposed to be getting into-like the cabinets and opening drawers etc., or trying to put things in their mouths that they shouldn't!
As usual I ask that we all pray for those who need our prayers and that everyone continues to do great!
Jeannie
Tueday, February 11, 2003 10:35 AM CST
Hi everyone, and let me begin by thanking you all for your prayers, I have heard nothing but good news. We saw the oncologist yesterday, and he said Nicolas is doing great, and he also said that we are one of the few cases that he has seen that is doing so good with the neurological problem-OMS, he actually suggested stopping the Prednisone, which would be great, he is not shaking as much, as has been improving slowly everyday, everyday he does something he could not do before-even a week ago. Just yesterday when we got back Nicolas was standing holding on to the couch, and he let go without realizing it. HE stood without support for at least 5 seconds, major accomplishment for a child who could not even crawl last year in March, so things are going really good right now. WE take things one day at a time and just keep praying that everything works out good. Please know that I pray for all of those out there who need our prayers and thanks so much for your kind words!
Jeannie
Thursday, February 6, 2003 3:40 PM CST
Hi everyone,
I'm writing a quick update to say that I'm very happy, I must have called about 10 times to get the results on Nicolas CT Scans and they were all negative, the best news I have heard, I was so excited, so far 1 year cancer free. All three of my boys have colds right now, and amazingly Nicolas is showing no signs of relapse from his Obsoclonus Myoclonus condition, he shakes but not as much, but that right now is not as important, the cancer issue was. We have to go back again next week to see his oncologist just for the blood tests and urine test, etc. We also have tosee the Neurologist but that is until March. As usual I ask that we pray for all those in need, and for those who lost their lives in the shuttle accident.
Thank you all for your prayers!
Jeannie
Tuesday, February 4, 2003 9:57 AM CST
Hi there everyone,
We have had a hectic weekend and Monday. Monday was Nicolas's CT Scan, and we had to wake him up at 5:00am and drive just about 3 hours to get to the hospital for the scans. Then came the wonderful task of getting Nicolas to take his contrast, which he didnot want and then kept throwing up continuously. Since this is usually the case we the next step is to insert a tube down his nose so they can administer the contrast directly into his stomach. I'm just glad he is old enough now to where they put him to sleep first and then put the tube in, they used to do it when he was awake, he threwup the entire day and night last night, I lost count of how many time I had to wash his blankets. I just ask your prayers that his cancer has not come back and that the scans continue to be clear.
As you all have noticed I have removed the guestbook for now. Unfortunately I was informed that one of the persons who always signed our guestbook was lying about being sick, and I actually I believed that she was sick and that she had a friend that died of cancer. It so sad that there is people out there that do these kinds of things, may god help her she really needs it!
Thanks all!
Jeannie
Tuesday, January 21, 2003 at 02:34 PM (CST)
HI everyone,
The weather has been really pretty down here in my hometown of Eagle Pass, very sunny and warm, which is not unusual for us. Its rare when we even get a freeze.
THe boys have all been doing ok, Nicolas has been very fussy, he threwup yesterday, quite a mess I might add, and he was mad. He has now started hitting whenever he gets angry at me or anyone else for that matter. He still shows to sign of walking, and I have been worried since his legs are getting thinner, the doctor said they show sign of atrophy-I'm not sure how to spell it, but the muscle is wasting away from not being used. Not good, but he just does not want to put any effort when I try and walk him around the house, he begins to scream and shake-myoclonus of his muscles, and basically we accomplish absolutely nothing. THe physical therapist has the same problem with Nicolas. He has improved in crawling, but he still falls over alot, and my baby is much better at crawling at 10 months of age than Nick, but they are different situations. I just hope that all the scans are negative, I'm so worried about it, that is all I want never again to hear that Nicolas has cancer, I don't think I can bare it, I feel so sad reading about other children passing away, I wish this was not happening, this whole ordeal has changed my life forever, how much do we take our children for granted when they are healthy, and I don't just refer to cancer, any type of disease or disability, their are so many, we as parents suffer no matter what is hurting our children, let us all continue to pray for each other and all those suffering through difficult times!
Thanks all for your kind words!
Jeannie
Friday, January 17, 2003 at 01:22 PM (CST)
Hello to everyone,
I hope everyone is doing great, our adventure at home is still going on, the sheetrock fell down so now we have an open ceiling with smelly insulation hanging down which I'm slowly trying to remove, all the pipes and sheetrock are supposed to be replaced.
Nicolas has been doing great thank goodness, he is really excited since he finally was able to climb on to a little truck his grandparents gave hime, and now he wants to be pushed around the house. My arms hurt from pushing him, but that smile he gives me just gives me more energy to push him some more. My other two boys are a bit jealous for they want to get on the truch as well and Nicolas will not let them!
I hope everyone has a great weekend, and stop by the CHubby Chica website @ www.chubbychica.com and adopt a child, so you can visit their websites and say hi to them. The families of these children would really appreciate! Blessings and prayers to everyone!
Jeannie
Tuesday, January 14, 2003 at 01:42 PM (CST)
Hello everyone,
Well the disaster at home is slowly being fixed and unfortunately we didnot have water damage on our insurance so it didnot cover, they still have to do more repairs and change all the pipes in the house. The sheetrock is falling in the kitchen. But after reading about the children that have recently passed away this ordeal about the house is nothing compared to the loss of a child. I want to begin by asking everyone to say a prayer for those who have lost their loved ones. I get so sad when I read these things I just cannot comprehend why this is happening to these beautiful children, sometimes I just don't think it is fair. Children and babies should not have to go through this. My baby Eric just turned 10 months and this brought memories of when Nicolas got sick in 2001 when he was 10 1/2 months old he was just a baby. I get scared that it may happen again, but I know I need to stop thinking this way because sometimes I think I just cannot handle hearing so many sad stories, I just put myself in their positions knowing that if the cancer comes back Nicolas will not be in good shape, but I don't want to think like this and as the CT scan appointment gets nearer I feel more stressed out. I hope it is clear!
Nicolas had a SSI appointement today at the doctor's, he has so far qualified and his considered disabeled. At first I was really sad but then I realize that no matter in what shape he is in, he is with me and that is all that matters, so far he has beaten this monster of cancer, and the other neurological problem we will take one day at a time. He has been very grouchy but that is because of the steroids, he is still the same but has been babbling more and just the other day he finally clapped his hands, I was so excited to see this small improvement, he still has trouble sitting unassisted but can do so with support or a belt around his waist. The little improvements he does is what makes my day, when you have a sick child even the smallest things they do make us happy. For a child that is not sick it is no big deal, I can see how easy it is for my baby Eric to sit where as Nicolas has to struggle but he is a fighter and I know one day he will hopefully walk even if it is with a walker!
Once again please let us all pray for those who are sick, there are so many out there, while some of us enjoy life others are struggling so hard to keep it!!
Jeannie
Monday, January 13, 2003 at 02:15 PM (CST)
Hello everyone, I hope you all had a great Christmas and Happy New Year.
Today has been a disaster, one of our pipes burst last night and it was literally raining inside our home with stagnant water. It was coming out of the lights, fixtures, walls everywhere, needless to say I was hysterical, my biggest concern was that the boys room would get wet. But fortunately that did not occur. We did have to call in an emergency worker from our water plant to come turn off the meter. It smells pretty bad in our house, and we had have no running water at this moment. My biggest concern is
the water damage that may have occurred as a result and the possible growth of mold since everything is wet inside the walls.
On a lighter note Nicolas has been doing good, he had therapy last night before the disaster. And he has been extremly fussy and he seems to be suffering from mommy's syndrome. Doesnot want to leave my side.
Well I hope everyone is doing great! I have to get back to the situation at home.
Jeannie
Friday, December 27, 2002 at 01:47 PM (CST)
Hi everyone,
I hope you all had a great Christmas, we sure did. Nicolas received lots of gifts from all of us and Santa. He seemed more happy with the prospect of tearing the wrapping paper than the contents. But this is only because he does not understand yet. I have felt kind of bad seeing my other baby who is 9 months old already sitting and pulling up better than Nicolas does, and in my heart I know he will walk before Nicolas does. But I cannot compare them Eric has not been through what Nicolas has, and Nicolas is slowly progressing. As the month of Feb. approaches I get more and more anxious about the CT scan he must have. I sure hope they all come back clear. It would just kill me if the cancer comes back, but I must just hope for the best.
Nicolas favorite toy of all the ones he received was a car, that he loves to push around on the floor, he also liked a game of balls that my older son received, so therefore that has caused a bit of friction between the two of them, Neither Nicolas nor David like to share, so they argue amongst themselves for the same toy, David yells no that is my toy to him and Nicolas throws a tantrum and trys to hit David. And of course when this fails Nicolas crys and crys so I will come save him and give him his brothers toy. They are so cute, I'm glad I had them close together because they fight but at the same time love eachother, Nicolas plays better with the baby, he thinks his younger brother is a toy and gives him tons of kisses, eric doesnot enjoy all this love from Nic, and usually crys since Nicolas is a bit rough at times.
Once again I ask that we all pray for all the sick children and their families, many children spent christmas in the hospital and we must not forget them! Have a great New Year's!
Jeannie
Monday, December 16, 2002 at 04:32 PM (CST)
Hi everyone,
Thankyou for all your kind words you have written in our guestbook.
Nicolas has been doing great, he came down with a cold and for the first time did not shake. He also started to say no with his head to us, and now is nodding his head no for everything. I love to see that he can at least understand that. He is also making more and more sounds, and I think he is getting close to waving bye bye. He has not thrownup anymore either, which has also been good. So for now everything is going good and we cannot wait for Christmas, my husband and I will be going christmas shopping and we are probably going to go crazy buying toys for our three boys! I feel like and overgrown child myself!
I hope everyone has a great Christmas!
Jeannie
Monday, December 09, 2002 at 11:50 AM (CST)
Hello Everyone,
Let me begin by thanking everyone for their guestbook entrys. It is a pleasure to read all of your kind words.
Nicolas has spent the weekend indoors, the weather has been cold, raining and although he wants to go out I have been keeping him indoors. I did take him out to look at Christmas lights on Sat. night. He was having a tantrum because he wanted to go out. He has been throwing up as usual. But fortunately yesterday he didnot, which was great. He has been doing OK, still no sign that he will walk anytime soon. He has therapy all this week, today the physical therapist will be seeing him. I want to see my little boy walk so much. If only he would at least attempt it, but he does not want to even try, I guess the shaking makes him feel scared. HE shakes more when I try and force him to walk holding on to me. Other than that he is vocalizing more with his BABA, and MAMA, these is an accomplishment for him. Since he would not even make a noise a couple of months ago. I realize the sounds he is making are very delayed but he is slowly making progress which is all I want. Another month to go and were due for a CT scan, I get so scared during this time, I'm always afraid that the cancer has come back, I hope it never does, the prognosis would not be good it it were to return. But I have hope that it has not. He is also supposed to begin chemo in february, I don't want him to take this medication, I'm going to try my very hardest to convince the doctor not to resort to this drug-Cytoxin. Well enough worrying, it seems I spend half the time worrying and getting myself stressed out. I have visited several websites, their was a very touching one about a baby who was born Still. It is so sad that a perfectly healthy baby were to pass away because of its own umbilical cord. It made me cry reading this story. After being pregnant three times, I can't imagine how difficult it would be to loose a baby in this manner. I love babies they are so beautiful and innocent, they are little angels.
Once again lets all keep praying for those in need!
Thanks all for your prayers!
Jeannie
Tuesday, December 03, 2002 at 03:47 PM (CST)
Hello to everyone, I hope you all enjoyed your Thanksgiving Day. We spent it at my house with all our family and friends. Unfortunately Nicolas was unable to join us in all the eating since he cannot eat food with consistency, regardless he seemed to enjoy seeing all his little cousins playing. He threwup again last night, and it was quite a mess. Needless to say he didnot go to bed until 2:00 am last night, and of course I was up with him. He felt sick after he threwup and I don't blame him. I HaTE throwing up. So today after many cups of coffee I feel better. Nic on the other hand is very grouchy and to top it off the rash on his bottom is back again. Oh the wonderful side effects of that nasty medication Prednisone. But I need him to take it so he won't relapse from OMS.
Nicolas qualified for the Make a Wish, you can imagine my surprise when they called me to tell me. I was excited and sad since it is a sad reminder that he is sick, but it is nice that their are organizations out there that put so much effort into helping children who are sick. They are angels put on this earth to help others in need. I doubt we will make a wish yet, for one I feel that Nicolas would not enjoy himself since he is so behind in his development and two I want him to make the decision of what he wants I cannot wait for that day to come when he will understand me and be able to talk and walk-I have dreams about this sometimes. So I won't pursue this yet until nicolas is capable of enjoying whatever he wants-afterall this is his wish not mine and he needs to decide.
Once again I ask that we continue to pray for all of our children whom need our prayers!
Jeannie
Wednesday, November 27, 2002 at 10:33 AM (CST)
Hi everyone,
Just writing a quick Hello, and I want to wish everyone a Very Happy Thanksgiving, I hope everyone enjoys themselves with their family and friends.
Nicolas threwup again last night, so I was up late cleaning up and washing everything and scrubbing the carpet and couch. I also had to give Nicolas a bath since he was pretty dirty.
Well I must go so I can begin preparing myself for tommorrow, we are having several people over.
Once again, Happy Thanksgiving.
Jeannie
Monday, November 25, 2002 at 07:22 PM (CST)
Hi everyone,
First of all let me begin by thanking everyone for signing our guestbook we enjoy reading everything you all have to say, and a BIG THANKS to Jessica for the beautiful poem and pictures she made for Nicolas, please visit her at www.geocities.com/magicalbarbies, and sign her guestbook-she is another angel in this world and loves to make new friends.
Nicolas went to the doctor today and contrary to what I thought he actually gained a pound which made me so happy considering he did throwup yesterday but he is getting better, but that is because once again I have tapered off on the dose of Prednisone, he seems much happier on a lower dose. He had a complete blood count done and so far everything is looking good healthwise. At this moment he is very peaceful watching Frosty the Snowman with his older brother. He was very angry this morning, he hates going to doctors, especially getting labs done.
We all had a busy weekend, we put up the X-mas tree early and the lights outside as well. We were all in the Christmas Spirit, and even I have felt in a much better mood. Not dwelling so much in Nicolas problem. He seems happy when he is having good days, and once again I know I should be happy I still have him with me! Amazing how much we love our children, it is a love I cannot describe!
I want to wish everyone a Very Happy Thanksgiving, and lets all continue to pray for those in need of our prayers!
Jeannie
Monday, November 25, 2002 at 07:22 PM (CST)
Hi everyone,
First of all let me begin by thanking everyone for signing our guestbook we enjoy reading everything you all have to say, and a BIG THANKS to Jessica for the beautiful poem and pictures she made for Nicolas, please visit her at www.geocities.com/magicalbarbies, and sign her guestbook-she is another angel in this world and loves to make new friends.
Nicolas went to the doctor today and contrary to what I thought he actually gained a pound which made me so happy considering he did throwup yesterday but he is getting better, but that is because once again I have tapered off on the dose of Prednisone, he seems much happier on a lower dose. He had a complete blood count done and so far everything is looking good healthwise. At this moment he is very peaceful watching Frosty the Snowman with his older brother. He was very angry this morning, he hates going to doctors, especially getting labs done.
We all had a busy weekend, we put up the X-mas tree early and the lights outside as well. We were all in the Christmas Spirit, and even I have felt in a much better mood. Not dwelling so much in Nicolas problem. He seems happy when he is having good days, and once again I know I should be happy I still have him with me! Amazing how much we love our children, it is a love I cannot describe!
I want to wish everyone a Very Happy Thanksgiving, and lets all continue to pray for those in need of our prayers!
Jeannie
Tuesday, November 19, 2002 at 01:30 PM (CST)
Hello to everyone, and once again thanks for visiting our website, we really enjoy reading all your comments.
This weekend I was so happy because for the first time since Nicolas got sick I was able to take him to HEB and he was able to sit in the cart unassisted. For most of you it is hard to understand what I mean, but with OMS constant ataxia of muscles it is very difficult to coordinate and stay still without falling over. Nicolas has never been able to sit in a high chair of cart since he first became ill. He still doesnot sit completly straight but it was an accomplishment.
On a sadder note Nicolas has bee extremly moody, last night I was up with him until 1:30 am he just wanted to be held, he would cry if I even attempted to get up without him. I finally was able to get him to stay in his crib, needless to say I'm a bit tired. Today he is very fussy, crying alot and does not want to eat. He also came down with a rash on his bottom, which looks quite painful. I've been putting some ointment and it looks better today. This rash is a consequence from the Prednisone-the dreadful side effects. For those of use who have used Pred, in high doses you know about all those awful side effects. He is still throwing up on a daily basis, and I may have to resort back to Zofran if he does not improve. I'm worried because he has lost weight again and that is not good for a growing child. I have an appointment this Thursday with my other baby to see the pediatrician, but I also want to consult about Nicolas and see what the doc thinks about his loss of weight.
Once again I ask everyone to continue and pray for Nicolas and all the other sick children whom need our prayer!
Jeannie
Friday, November 15, 2002 at 11:30 AM (CST)
Hello to everyone,
Thankyou all for keeping Nicolas in your prayers and also for signing our guestbook, we really enjoy reading all of your messages!
Nicolas has been doing better, he seems to have a routine now of throwing up every night. The doctor says it is the medication, I believe it is also that. I hope everyone has been doing ok. We all have to , Nicolas is in a much better mood, and has been more playful and active. I have seen no change in him with the increase of Prednisone, more and more it looks like we may have to go back to AZTH.
I'm beginning to get excited with Christmas around the corner, this will be the first X-mas Nicolas enjoys. Last year he was very sick from his OMS, he didnot like to be around people, we went to my moms house last year but left within an hour because he began to cry and cry. When OMS is active he doesnot want to be in any different surrounding only what he is accustomed to. Right now we don't have that problem because it is controlled with the steroid he is taking, which has made life much easier!
Nicolas seems to be crawling faster than before, between chasing him and baby Eric I get my excercise for the day! Please everyone who reads this don't forget to keep praying for all the sick children, they need our prayers. Their are so many out there, I wish so much they all get cured. There is another family who needs financial help for their son Cameron Boyde, please pray for him and visit his website so you can read his story,and help him and his family out!
caringbridge.org/wa/cameronboyde/index
Take care everyone!
P.S. Hi Moraima, see you this weekend!
Jeannie
Tuesday, November 12, 2002 at 02:09 PM (CST)
Yesterday was an exciting day for Nicolas, my husband and I went shopping to Wal-mart and bought Nicolas some fish. He absolutely loved them, and he would not stop babbling at them. We set them up in his room so he can watch them while he is in his crib. I'm glad it made him babble at them since his speech is so impaired, the speech therapist just wants him to make more sounds so he can communicate with us and try and let us know what he wants.
He had trouble sleeping again last night, but this time I think it was just the excitement of his fish, he made noises at them until at least 1:30 am. I gave him his medication this morning but seemed alright with it, he is still crying alot, but he also has periods where he is just smiling and giving me kisses. He's been playing more and more with his baby brother Eric who will be 8 months on the 16 of this month. Eric is crawling all over the place and Nicolas is always crawling right behind him. I'm kind of sad that my baby Eric is developing so quickly and I know he will probably walk before Nicolas, my baby sits better than Nicolas does. Although I know I shouldnot compare, Eric has not gone through what Nic has and does not have the neurological problem either. Regardless Nicolas has come a long way from the way he was 8 months ago when he could not even crawl, sit or do anything. He is much better, still shaky but not as bad thanks to the Prednisone. He's been pretty happy so far today, playing and crawling. I hope this means his body is adjusting to more Prednisone. I'm afraid of the long term effects it may have on his body. He is a hairy little boy right now, but so far his blood pressure has not gone up, and his adrenal glands are functioning just fine. His stomach is the only one suffering, lots of heartburn, esp. at night. Zantac seems to help, I'm also giving Mylanta, I just worry he may get an ulcer from so much acid in his stomach.
I hope everyone had a nice weekend, and thanks to everyone for signing Nicolas's guestbook, and a big Hello to my best friend Moraima!
Jeannie
Monday, November 11, 2002 at 10:29 AM (CST)
Hello to everyone, and I hope everyone enjoyed their weekend. A special thanks to all our veterans whom have served for our country and even given up their lives for us.
Nicolas did not have such a good weekend, as I have mentioned before I have been going up on his Prednisone medication and I believe as a result is suffering from the side effects. He threwup on Friday evening, and Saturday morning, yesterday he did not throwup but he was extremly moody, he had crying spells throughout most of day. He did not want to crawl and spent most of the day on the couch. He received therapy yesterday but except for a short period during the session he cried most of the time. He is also having trouble sleeping, and to make matters worse, when he crys like that he begins to shake and that makes him cry even more. He finally fell asleep near 12:00am last night. This a child that usually goes to sleep at around 7:00PM at night so I'm seeing a change in pattern. He is also experiencing more heartburn, and he's been quite constipated but that could have other causes. I'm noticing that he is going back to wanting to be in a fetal position. What I mean by that is that he won't let is legs drop he keeps them curled up to his chest, just like an infant does those first three months after they are born. I believe this is related to his OMS. (I thought the increase in Pred. would make him better) but so far I've seen no change. I don't know if he feels sick, or if he has pain. It is so frustrating to see your child scream and cry and not be able help him because your child cannot tell you what is bothering him. The speech, OT therapist felt that his myoclonus looked a little better, but his attention span was worse that before. He received physical therapy this morning and the therapist felt he still has shaking in his feet and back. (Still very uncoordinated). I realized this morning that I don't see that Nicolas still shakes quite a bit, I guess I've become accustomed to seeing him like that. People on the outside can tell right away since they have never seen him before. Needless to say, so far its been discouraging since Nic has not really improved and I feel that I need to go back to AZTH injections. The last time we saw the doctor he mentioned also trying Cytoxin (Chemotherapy) as another alternative. I'm not sure what to do, I'm afraid to try Cytoxin for fear of how sick he may get from the side effects. For those of you who visit our website please take a moment to pray for all the other sick children whom are in so much need of it. While some of us are enjoying life their are others who are suffering the loss of a child or fighting this awful, hateful disease of cancer. My prayers go out to all of them. After my experience I know what is really important and the need to cherish every moment of having your child with you and healthy. How many parents out there wished they could be doing the simple things like taking their child to the mall or shopping, or even getting mad at their child, instead of being stuck at a hospital just seeing their children suffer! I wish I could take my child out and have a normal life, but even with the way cancer left my child I still have him here with me and I'm so glad for it. I love my Nicolas sooooooooo much, and if it were not for OMS which saved his life, I don't know how Nicolas would be today, we may have not known yet he had cancer until it was to late. My prayers are with everyone!
Jeannie
Thursday, November 07, 2002 at 11:14 AM (CST)
Goodmorning everyone,
Nicolas woke up this morning with a cold, which does not surprise me since the few times we take him out he catches something. He woke up crying and in a bad mood, I still haven't noticed any increase in shaking. When a chid with OMS gets sick their body produces more antibodies to attack the virus or whatever foreign thing is in there. Unfortunately any increase in that causes more damage to his body which means more shaking. So that is why I try to avoid a cold since it usually means a relapse in OMS. But it is something I must deal with.
Nicolas has been doing good, I still haven't seen any improvement with the increase in Prednisone. He almost threwup yesterday after I gave him his medications, but fortunetly was able to keep it down.(Please excuse my mispellings when typing, I try to type fast and so I make many mistakes)He has also been sleeping alright, the big thing I have noticed is an increase in appetite, I hope he gains some weight since he's considered small and underweight for a 2 year old. Thank you all for visiting Nicolas website, I really enjoy reading your guestbook entrys. I read another little angels website yesterday his name is Cameron Boyd and he is such a cute, couregeous little boy whom needs all our prayers, so include him in your prayers-you can read his story caringbridg.org/wa/cameronboyd.
If I could have one wish granted to me I would ask that every child with cancer get cured, I hope some one up their listens to my pleas everynight, I'm still hoping for miracles for everyone!
Jeannie
Monday, November 04, 2002 at 05:24 PM (CST)
This Halloween turned out to be an exciting one, I dressed all three of my children. Eric the baby was a little fat batman, my oldest son David was Robin and Nicolas was a Pirate. Needless to say the one that enjoyed himself the most was Nicolas. He just loved being out and Trick or Treating and looking at everyone in there costumes. Since it began to rain we decided to go to Peter Piper Pizza, where are local radio station was playing music and their was a halloween costume contest. Luckily Nicolas did not catch anything which is usually my biggest fear, and was even able to eat some Pizza but only the cheese in very small amounts, which he really liked. (He probably gets tired of the baby food he has to eat.)
I have debated much of whether to go back to AZTH injections, I discussed it with one of Nicolas doctors whom suggested I try to go up more on the Prednisone and see how he does with that first. Currently I have been giving him 6ml but I have already begun to go up on the dose and I'm not sure if it is the medicine but he threwup this morning and it was nothing but the medicine that came up. I'm also giving him Zantac and lots of milk to protect his stomach but although he kept it down for an hour it did come up. I'm going to increase the dose anyways because when he threwup he started to shake quite a bit, and I read in an email from one of the members in my OMS Group that her doctor said if you still see shaking their is still the attack of the immune system on the brain, which only causes more damage in the long run.
In a way I must say this whole thing about the immune system and how it works is amazing unfornately in my son's case it is doing progressive damage that I was not aware of before. If only I had known what I'm learning now from my OMS group whom have much more experience than I do since their children are older and they have gone through all the treatments.
I havenot seen any difference yet in Nicolas condition but it is still to soon to tell. I was told I could apply for Social Security Disability benefits, some of the parents with children with OMS are receiving these benefits. I was not aware how serious Nicolas OMS really is until I read the article on Dr. Wendy Mitchell, indeed it was so interesting but discouraging to me since I was in the belief this could not get any worse than it already is.
I probably had already mentioned this report before on OMS,
but although everything sounds a bit sad, Nicolas seems so happy right now. If look back at last year he has made so much progress. It is slow, and although he still cannot walk in my heart I know he will eventually it is just a matter of time!
Tuesday, October 29, 2002 at 07:50 PM (CST)
Today has been an interesting day, Nicolas decided to remove his diaper and all its contents and get himself all dirty, fortunately for me I did not have to clean him. Instead my cousin whom babysits (thanks Bianca for being a great babysitter) my children while I work had the wonderful joy of having to clean his mess, and I bet Nicolas was probably very excited with his accomplishment once again of getting poop all over the place.
I have learned so much more on my son's condition (OMS) and different medications from a wonderful group (OMS message board)whom all have children with this disease. I so happy that I found them! Thanks to them (Lisa & everyone else)I'm realizing now that I may need to pursue a more aggressive treatment for Nicolas, although Prednisone has worked great, I feel it is not enough, and I may have to go back to the route of using AZTH once again, even with all its side effects. If it helps my son walk and become the child I once had a year ago before he showed symtoms of his cancer I'm willing to take the chance and try it once more. I probably going to call my oncologist and make an appointment to see him soon and tell him I want to try AZTH again. My experience was not the best the first time around but maybe a month was just no enough and he may need much more treatment. Nicolas has been throwing up more usually at night, I think it may the Pediasure I have been giving him, it may a bit heavy for him. But I'm giving him this since he is a bit underweight and small for his age. His appetite has suddenly come back again, hes been eating well this past week. He hardly ate before, what has caused this increase in appetite I don't know but I'm glad hes eating more. I want him to be able to eat solid food, that is another reason I want to go back on AZTH, when I was giving it to him last year he was able to eat cereal, crackers, rice etc. and now it has to be pureed, but after reading other moms stories I realize for sure this is due to the OMS and with AZTH he will be to eat our food and not baby food. All I want is the best for my child, I try not to show it to everyone, but it worrys me so much that Nicolas is still so very delayed in all areas of his development.
Monday, October 28, 2002 at 07:49 PM (CST)
This weekend was a great one for the whole family, for the first time we took Nicolas out. I think the only outings Nicolas has are to his Doctors appointments. The last big trip we took was when we went to our last appointment in San Antonio, for his usual CT scans. I must tell everyone that the nurse at the Crown MRI is the nicest nurse I have ever met, she has the nicest personality with children and so much patience. Her name is Myrna Talamantes, ever since I went to get the CT scan there for the first time I always request our appointments to be there and not at the Santa Rosa Hospital. Not that I don't like the hospital but sometimes they are not as patient and this nurse is GREAT!
The last scan was in August one year from when he was diagnosed, although now I know the tumor actually formed when his nervous system was forming-neural plate to be more exact but we didn't catch it till 10 months later, and only because of the OMS. This last scan was clear!
We took nicolas to the Peter Piper Pizza, the whole family me, my husband David, Little David and Baby Eric. Nicolas really enjoyed looking around, he could not play on any games since he cannot walk yet and he has trouble sitting completly straight since he still shakes a bit. I don't think it is as noticable as before. He certainly has improved with the Prednisone, IVIG did absolutly nothing for his problem. From Peter Piper we went to Blockbuster and then we went for a ride and we came home. Nicolas was very tired from our outing & went to sleep quite early. Sunday we went out again the whole family and Nicolas grandparents joined us for lunch. It was certainly an adventure since we are not used to going out with the three kids, I usually just go out by myself to do the errands while my husband stays home with the children. Needless to say I was very happy that we went out I finally felt like a normal family. I do get a bit depressed when I see all the other children running and playing and I wish so much Nicolas could walk and run and talk to me, I will try to keep my hopes up so as not to get sad about our situation.
I must say that even though Nicolas has OMS, he sure has become a little menace. He had discovered how to take off his diaper and now enjoys taking it off and the other day he had poop in it and Nicolas had lots of fun removing the contents and plastering it on the wall and on his head. At first I was going to reprimend him for his actions but he flashed me this big smile and I could't help but laugh, I proceeded to give him a much needed bath. The other new thing he has accomplished his climbing on the sofa, I was so overjoyed to see him do it. This is a child that 6 months ago barely crawl and could not hold his own weight because he shook so much when trying to do so. These little things may not seem like much, but when you have constant involuntary muscle contractions it is very difficult such as in Nicolas case and any other person with a neurological disease. He also started saying no with his head, another great accomplishent for son, it took lots of repetion but he finally got it!
We are really looking forward to going Trick or Treating, I hope Nicolas enjoys himself as well as my other children. I hope everyone else has a great Halloween!
Thursday, October 24, 2002 at 02:13 PM (CDT)
I'm really happy to see that I have had visitors to My son's website, I don't write as often since I spend most of my time off the computer, if anybody has a chance to I'd really appreciate it if you could sign our guestbook, I'd like to show it to Nicolas when he gets older. He is still to young to understand although he is two, our therapists say he is at an age level of between 6-9 months due to his OMS. He is like a big baby, very playful I might add. I believe I left off during the time Nicolas was on AZTH. The neurologist (actually there have been two neurologists we have seen) have suggested a form of dialyses where they remove the antibodies and put back in the blood, or a bone marrow transplant was another option. Both are experimental (protocols) but I have been to scared to put my baby through that. If anyone reads this and has had an experience with it please let me know. Now currently Nicolas is on Prednisone at the highest dose on alternate day treatments. He seems to be doing well, aside the fact that he is underweight and small for his age. He still shakes but his eye movement is controlled at this time. The bad thing is when he becomes ill with even a little cold we go back to square one, his eyes begin rolling back and he begins to shake as if he has constant muscle twitches, and it also interferes with his sleep, which is when it is the most noticable. He still even with medication cannot sit very straight because of ataxia of his back muscles. He throwsup on a regular basis, the doctors say the Prednisone slowly is damaging the inner lining of his stomach, so we give him lots of milk and zantac for hte acid reflux. I try to stay away from Zofran which gives him some bad headaches, guess it is a side effect, and Benadril knocks him out. I don't really like Reglan another medication they gave him, but it made the nystagmus of his eyes worse than before so I don't give him that anymore. Other than that he seems a happy child, we don't take him out much sincehe cannot be exposed to other sick children (Dr's orders) since he is immunosuppressed. I took him to the Pediatrician yesterday for oneof his many checkups and they let me go in without having to wait since I have a letter explaining the situation on Nicolas condition, and everyone else in the lobby was complaining they had let me in. But I cannot blame them they don't know what is wrong with Nicolas or why I get special privledges (what a way to get them). Nicolas spends most of his day with my other two children and they love to play and fight. Feeding time is especially difficult since Nicolas can only eat pureed food, weak throat muscles due to the OMS, and he usually spits up right after. I just want him to be able to walk, since he became ill last year he didnot move for about 5 months after surgery, he crawls now a bit clumsly, falls alot. I feel so sad sometimes that he cannot go out and run and play like other children, he is always home and you can tell he wants to walk but he is still shaky and frankly don't know when it will happen. I sometimes dream this had never happened but when I think how much harder other parents have it than I do, I feel even sadder for them. I don't know why children or babies have to go through this or why some of them die. All of them are so couregeous I have met so many of them now, and it breaks my heart to hear when some of them have only been given months to live. Its just not fair I pray for miracles to happen for them. I don't want to say Nicolas got a miracle because all chidren are the same they are special nobody is luckier, but for some reason God wants some of them with him. I don't understand why, or even why some are sick while others are healthy. I guess I still have not been able to understand why this happened to my baby and why it happens to other children. I spent countless days months etc trying to find out why cancer is more and more common in children. Is it our water, food pollution? I don't know but I think more research needs to go into childhood cancer. To many children are getting sick, and the numbers keep rising. When Nicolas was dx with Neuroblastoma, they told me it was extremly rare and now I hear of more and more new cases. The doctors always tell me that although he is remission now, this cancer has a high rate of relapse. So everytime we have a CT scan with contrast I live in fear until I get those results. You all know what I mean. On one occasion there was a bump on his head and our oncologist told us it had to be check for another possible tumor, you can imagine what we went through until we got the results it was bone (oddly shaped) but thank goodness it was only that. So now any little thing I feel weird on his little body I think the worst. Well I have to go feed all my children, and thanks for visiting our website!
Tuesday, October 22, 2002 at 09:05 PM (CDT)
I don't remember where I left off last time (should have previewed it before). Nicolas had numerous tests to find out how much the cancer had spread during the time of diagnosis. After days of testing we got the good news that it appeared to be a stage 1 cancer but until the bone marrow, lymph nodes, liver etc, biopsies we would not know for sure. He got operated on August 20, 2001. The surgeon removed a peach size tumor. The hardest thing was watching my baby suffer so much during his recovery in intensive care. He did receive alot of morphine but that made him throwup alot. We had to wait for the diagnosis of whether or not the tumor was n-myc ampilfied and whether all the biopsies were clean. I prayed so much during this time I just wanted Nicolas to be alive, when I first heard the Cancer word I associated it with death. I used to watch all those shows with children suffering from cancer and I would think to myself how do the parents do it to be so brave. Now I knew I just could not loose hope. So many things happened at that time. I was two months pregnant with my third child, I began to bleed at the hospital after my son's surgery with clots and i was sent to the emergency room where they told me I was loosing the baby, but miracles happen because somehow that baby stayed alive and is now a healthy 7 month old baby. The neurologist was still worried about the OMS, i didnot care at that moment my concern was the cancer. After surgery and after he had recoverd I saw how much his eyes rolled back and he was shaking more than before. For those who don't know about OMS, basically my son looked like if he had Parkinsons or one of those diseases. He shook constantely and couldn't even sit without falling over. The Doctors wanted to begin AZTH in combination with IVIG to see if that helped, they said it had to be controlled as soon as possible. The medications made him very sick when I was discharged a month later I continued the daily injections of AZTh but he threwup on a daily basis. He was so sick all the time he took Zofran, Prednisone, AZTH, Tylenol, Zantac etc. All I did to confort him was rock him, but nothing seemed to help. Finally he was taken off AZTH because of Cushing Syndrome and we were put into the hospital again for another round of IVIG and more catscans to see if they were clear. By now we got the news that indeed the cancer had not spread and tje biopsies were all clean, and he would not need chemo at this time. His central line was finally removed which I was so glad about since it had already become infected before-and now came dealing with the damage the tumor did. I was really depressed at this time since he hardly ate and the fear which is still present of the cancer coming back since we were told the this cancer tends to relapse.
Tuesday, October 22, 2002 at 09:05 PM (CDT)
I don't remember where I left off last time (should have previewed it before). Nicolas had numerous tests to find out how much the cancer had spread during the time of diagnosis. After days of testing we got the good news that it appeared to be a stage 1 cancer but until the bone marrow, lymph nodes, liver etc, biopsies we would not know for sure. He got operated on August 20, 2001. The surgeon removed a peach size tumor. The hardest thing was watching my baby suffer so much during his recovery in intensive care. He did receive alot of morphine but that made him throwup alot. We had to wait for the diagnosis of whether or not the tumor was n-myc ampilfied and whether all the biopsies were clean. I prayed so much during this time I just wanted Nicolas to be alive, when I first heard the Cancer word I associated it with death. I used to watch all those shows with children suffering from cancer and I would think to myself how do the parents do it to be so brave. Now I knew I just could not loose hope. So many things happened at that time. I was two months pregnant with my third child, I began to bleed at the hospital after my son's surgery with clots and i was sent to the emergency room where they told me I was loosing the baby, but miracles happen because somehow that baby stayed alive and is now a healthy 7 month old baby. The neurologist was still worried about the OMS, i didnot care at that moment my concern was the cancer. After surgery and after he had recoverd I saw how much his eyes rolled back and he was shaking more than before. For those who don't know about OMS, basically my son looked like if he had Parkinsons or one of those diseases. He shook constantely and couldn't even sit without falling over. The Doctors wanted to begin AZTH in combination with IVIG to see if that helped, they said it had to be controlled as soon as possible. The medications made him very sick when I was discharged a month later I continued the daily injections of AZTh but he threwup on a daily basis. He was so sick all the time he took Zofran, Prednisone, AZTH, Tylenol, Zantac etc. All I did to confort him was rock him, but nothing seemed to help. Finally he was taken off AZTH because of Cushing Syndrome and we were put into the hospital again for another round of IVIG and more catscans to see if they were clear. By now we got the news that indeed the cancer had not spread and tje biopsies were all clean, and he would not need chemo at this time. His central line was finally removed which I was so glad about since it had already become infected before-and now came dealing with the damage the tumor did. I was really depressed at this time since he hardly ate and the fear which is still present of the cancer coming back since we were told the this cancer tends to relapse.
Monday, October 14, 2002 at 08:43 PM (CDT)
Nicolas was born Septemer 28, 2000, he was a beautiful healthy baby and my second son at the time. We were so excited that are son was born healthy. Throughout most of my pregnancy I thought he would be born with Down Syndrome, because one of my AFP tests came back positive. I refused to have an amniocentesis for fear of loosing the baby. For 10 months we enjoyed this beautiful baby, by this time I was already pregnant with my third child when our nightmare began.
I remember it as if it were yesterday, on 8/11/01 a Saturday afternoon we were at my in laws visiting. That was the first time I observed the Nystagmus of his eyes which was occuring at interval of every 40 minutes. I thought something might be wrong but had no idea what it could be. The following day we went to mass and the eye movement was occuring more frequently. I was very worried what could be wrong with my baby. i called his pediatrician and told me unless I thought it was an emergency to take him in the ER so he could take a look at him. i said yes and took him in. Blood tests began, lots a questions, they kept asking me if our baby had swallowed poison, or some sort of seizure medication, I kept saying no, none of us even have a seizure problem much less medication in the house. They did a cat scan of his head and could find nothing wrong and sent us home with a followup appointment in the morning. We went the following morning to be told we were going to be referred to a neurologis and an ophtamologist. This was Monday and by that afternoon his head began to shake and he was having trouble crawling. We took a 2 1/2 hour trip to San Antonio, to see the opthmologist, who did a bunch of test and concluded it was aquired nystagmus. Our neurologist appt. was to be 3 weeks from then. On the way back he began to throw up in the car. Yet another symptom of the real problem. That night his whole body was shaking, he was throwing up, and could not crawl, walk on furniture or even hold his body. Now I knew something was very wrong with him. The next day I went to my ped. again and insisted to get an appt immediately with the Neurologist. Dr. Delgado another was great and got me that appt so the next day we went S.A. again, it was Thursday and by 9:00am were getting all kinds of test from eeg's to scans etc. They could find no seizure activity in his brain so the Dr. told us we needed to go to the hospital for more tests. He didnot want to tell us what he suspected. To the Hospital we went I never knew we would not leave till almost a month later. The tests began blood, more blood, they poked him, blew his veins so many times I lost count. Many MRI's Cat scans, and urine tests with a catherer, lumbar punture, Nicolas cried so much and suffered so much.
By saturday morning the Dr's came in holding scans, i knew they had what they were looking for. The diagnosis was a Neuroblastoma cancer located on his left Adrenal Medulla.
Next we were moved to the cancer floor, the 7th floor at the Santa Rosa Childrens Hospital. Such a sad floor and now my son was part of a floor full of angels and such brave, brave babies and children. (Continued later) my baby just woke and wants to eat. Bye to everyone!
Saturday, October 12, 2002 at 01:38 PM (CDT)
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