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11/24/04 I have not updated you for some time, since it had appeared that there were no changes. Avromie is in his second year at his little school (class pre-1A), and truly loves being there. He is learning to read and tells me all of the time how excited and happy he is about that. He does not mind dragging his oxygen tank about with him, or getting his feeds at school. In fact, there is another boy in his class who also has a tummy tube, so they are together at that time. On the whole the kids have totally accepted him and he has lots of friends there. However, he has fallen ill with fever and is presently in the hospital again. They are giving him antibiotics for the fever, but his lungs do not appear to be doing well. It appears that he has fluid in his lungs. His numbers show that he is not getting enough oxygen. They have increase his steroids and are trying to force oxygen into his lungs with a special mask, but if his numbers do not go up soon, he might have to have a "trach" to facilitate the process. We hope that it does not come to this. I can't imagine the impact that a 'trach' would have on him at home and in school. 01/10/04 Here is a picture of our little guy, taken at his sister's birthday party about one month ago. He has lost some weight and looks wonderful to me. The biggest change is that his tube feedings have included more table food (blenderized, of course) and less of the fatty formula that he had been getting. He does seem happier and more energetic with the change in his diet. Hopefully, he can continue to receive more and more table food and less formula as time goes by. He is also still being taught to tolerate swallowing table food, and has been good about cooperating. On the whole, not much else has changed. Avromie still has ups and downs with his oxygen needs, but he continues to attend school - which he really LOVES, and he is making friends there. We still hope to eventually get him off of those steroids, and watch his bones get stronger and longer. But for the present, we are just delighted with his new look and his delight in life. Thanks for your interest and continued support. SoraLeah Leschen and family 07/24/01 These last few months have been relatively uneventful. Avromie continues to be on oxygen 24 hours a day, but has gotten used to it and even makes allowances for it in his movements. He is up on his feet, walking around again, and has begun to talk. His coughing attacks have not improved, and last week he underwent a 24 hour test to determine whether there was any stomach reflux that is still entering and scarring his lungs. There was not any evidence, which leaves us still in the dark about what is causing him to cough and what keeps him from eating normally. He does not even care for lollypops and other treats that most kids enjoy. He continues to be a charmer, though, and full of humor and mischief. And when he goes outside for a walk, his portable oxygen tank goes in the kiddie shopping cart so that he can move about freely. He pushes his cart ahead of him and seems happy. He refers to himself as "A-yummy" tells us that he is two years old and that he is a 'big boy'. What a delight!! Scans continue to be clear. He has begun at last to gain weight and has grown into larger clothes at last. The next phase of treatment will be to seek help for his continued high anxiety, which may also be a factor in his coughing (but no one is sure). We continue to be grateful for all the love and support that we have had all along the way, especially from Lisa, Michael's Mom, who was there with us during the worst of times... 04/22/01 Avromie has finally returned home from the hospital where he spent almost two weeks trying to re-inflate that lung that collapsed. Coming home was wonderful and we hope that he can stay at home and continue to gain strength and stamina. He remains on continuous oxygen, and now has a monitor that will notify us if the oxygen saturation level drops too low. We were saddened to see that he no longer has a desire to stand or even to crawl on the floor, but we are hoping that this is only a temporary setback and that he will feel more confident and able to attempt these activities soon. His spirits are good, and that is encouraging. He is going to be fitted with a harness that will keep him in a sitting position for sleep, since they are trying to avoid the inhalation of saliva during periods of sleep. Apparently the only damage that was evident in his lungs was from aspiration which has caused scarring and is keeping him from absorbing the needed oxygen from the air that he breathes. He continues with the feeding tube for nourishment, the only change being that he is fed now during the day instead of at night. 04/05/01 Avromie's esophagram and biopsy were not very helpful, I am afraid. There was no evidence of fibrosis or other disease process in the lung, but there is scarring from inhaled fluid, probably saliva. That means that there is no disease there that can be medically treated. It was suggested that his esophagus is just not functioning properly. Last night his lung (where he had the biopsy) collapsed, so he is back at the hospital again for a few days. He is quite a little fighter, and we hope that his lung heals soon and completely so that he can be at home with his family, especially with the holidays coming... 03/20/01 As I sit here writing to you, Avromie is getting an esophogram at Hopkins. They are still trying to understand what is making him choke and have difficulty swallowing. Last week, the CAT scan revealed some lung problems that may be related to his difficulty keeping a blood oxygen level higher than 78 (It is supposed to be 100 percent saturation). Due to the fact that he has not been getting enough oxygen, he has been put back on the oxygen tube at home all day and all night. It has made a big difference in his behavior, since he seems livlier and more alert now. The doctors warned that without it his brain and body growth would be compromised. The theory is that he has some kind of lung impairment like pulmonary fibrosis, and we don't know just yet if it is curable or not. Perhaps a lung biopsy will be able to tell us. One of his doctors has discovered that a lung problem has shown up in other cases of rhabdoid, but treatment is not in any particular protocol as far as I can tell. However, it appears that, in any case, Avromie will have to remain on oxygen for a few years, perhaps until his tenth birthday, and probably will need medications including cortisone to reduce the inflamation of lung tissue. If they decide to go ahead and do the biopsy, he will be hospitalized for a few days in the next week or two. Please keep him in your prayers. Wed, 21 Feb 2001 Following a visit with the doctor, we were told Avromi is able to go without oxygen during the day now, and only has it at night. Also, he seems to have developed a taste for and ability to eat some soup at dinnertime. This is a big accomplishment. Also he is beginning to add words to his vocabulary one at a time, and even can put them together (I want more) at last!!! He will visit the eating disorders clinic on Friday and hopefully theycan help him learn to eat more and better. I will keep you posted. Wed, 14 Feb 2001 I am feeling a bit down right now. I just heard from Baltimore that our baby is not doing all that well. He has been having increasing difficulty with coughing and choking, and once two weeks ago fainted after a bad coughing fit. Last week he went in for scans and started turning blue when they tried to put him to sleep for the MRI. He has been on oxygen ever since and there are some serious questions up in the air. We don't know why his lungs are so scared, but apparently they are pretty badly scarred and he may need to be on oxygen for a few years. There was some discussion of biopsy, but since he cannot be put to sleep easily, I don't even want to think about what this means. Now, he will need to have a general anesthetic and intubation each time. Whoa! I was hoping it was going to get better... So here am I feeling sorry for myself and for the baby and for his parents. I know that I must be strong, so I hope to pull myself out of this soon, but there was a little 13 year old girl who died and was buried here today after a 27 month fight with a brain tumor. So I am a bit overwhelmed at the moment. It just seems so hard sometimes. Take care Sandy Wed, 3 Jan 2001 Today is Avromi's birthday. He is two years old today. He has hair, is walking and is beginning to say a few words like Mama and dada. He weighs about 17 pounds, has a ready smile and we love him to pieces. His last scans were clear and he is scheduled for another set shortly. We hope that these too will be clear. He does have a definite eating disorder, which we do not understand. He is still getting tube feedings through his tummy tube, but he will not eat or drink normally. So, at the end of this month he will start at the Johns Hopkins eating disorders clinic and, hopefully, we will be able to resolve this problem so that he can gain some weight and grow normally. His latest surgery apparently was successful, and he has not thrown up since the operation. This has forced him to retain all of his tube-feeding, and the result is that he is beginning to have more energy. He seems happier, and more like a normal kid, running around the house,playing and getting into mischief (he knows when he is doing something wrong), and you can see him smiling implishly when he does that). We have asked about whether we should take him out of the prayer circle and were told to continue for the next couple of months, so we are doing that. In the meantime, we wanted to thank all of our friends and supporters out there for all the prayers, and good deeds that you have done in Avromi's name. We know that you and they have made the difference between what the doctor's originally told us (6 months to one year was all they gave him) and what we are seeing. We continue to pray that Avromi will thrive and grow into a normal childhood and onwards. We continue to be aware that each of you has had a hand in his small miracle and we are grateful to each and every one of you and to G*d who has provided graciously for us. Update 08/31/00 Hi there, We wanted to update our page and send you a scan of a fairly recent photo of Avromi. He is still very small (7.2 kilo) but as cute as a button. His hair is all grown in and he has just taken his first steps. He continues to have difficulties since April in keeping food down, swallowing, and he has difficulty with choking when he gets upset or tries to swallow. He is going to Kennedy Krieger's eating disorder clinic to help him learn to eat so that we can hopefully get rid of that feeding tube in his tummy, and we are doing more scans to try to discover what is making him choke and throw up so often. We continue to be very grateful for all of the support that we have gotten from friends and the communitiy at large, both in time spent with us and in prayers. We have not a single doubt that prayer is a big factor in having gotten to this point at all, along with a dedicated team at Hopkins Children's center, who had never seen a Rhabdoid until Avromi's. Update 06/01/00 Avromi has had a long, relatively uneventful passage from the stem cell transplant until today. Unfortunately, he failed to gain weight and never regained his appetite, which caused some stress to his liver and other organs. At this time, he still weighs in at about 16 pounds. There was some talk of inserting a feeding tube if he did not start to eat, but about six weeks ago he began coughing and vomiting up everything that went down. After some really scary experiences where we suspected everything from a regrowth of tumor to scarring in the esophagus, we discovered that all this time he has been allergic to milk. That means he has been having reflux and indigestion all this time. The reflux burned his esophagus and throat and made him reluctant to eat because of a continually worsening sore throat. Now that we have stopped milk, he is beginning to heal. I saw him eating cut up chicken cutlet the other night with real gusto. Hopefully this is the beginning of normal appetite and retention so that he can begin putting on the pounds and growing normally. We are very grateful for all of the prayers and good deeds done in his name, and we are thankful that the scans so far have remained clean. He will go for another set next week, so we hope to continue hearing good news. Sandy Update 01/05/00 I am very excited as I write this, since the biopsy results have come in. Apparently all cells looked normal. That means we are officially in remission. Our little boy is going to grow up healthy and strong. He will retain the use of his hands and arms, and hopefully can even play in little league one day. I must say, he looks very different with hair and eyelashes. He seems so happy, and is laughing and babbling all of the time. He did stop losing weight, is eating normally and even drinking from a bottle again. So we hope that life will get back to normal and hopefully stay that way. I hope that this means that there will be lots more cures for this terrible disease. Maybe this means that we have all turned a corner... Update 12/09/99 Dear Lisa I have just returned from the hospital, and the news looks good. The doctor did not find any new growth, but he removed lots and lots of scar tissue before closing. The surgery took more than three hours. The cells will be studied microscopically and we should know by Monday whether any irregularities are found in the cell structure of the tissues removed. If there are none, then we are officially in remission and begin counting the five years to say that the baby has been cured. We are grateful to have come to this point, and thanks to all of you who are standing here with us in thought, prayer and giving us encouragement. I will keep you informed as soon as we hear the results on Friday or Monday. Right now the baby is a little uncomfortable, but he was moving his fingers and even his hand a little bit. This would indicate that the muscles and nerves are pretty much intact in spite of all the digging that he endured today. Hopefully he will heal easily and without incident. Update 11/10/99 We are truly happy to report that Avromi seems to have turned a corner. After a long long week of blood infections and repeated hospitalizations, he is once again home. This time, he is beginning to eat and to drink! He still refuses the bottle, but takes some formula from a sippy-cup, eats a little baby fruit, and was last seen picking up and eating little round oat cereal pieces. This is a major improvement. NO MORE IV feedings! At least we hope not. The swelling on his neck is gone, and his tongue appears normal again. Both seemed to begin to heal as his white blood cell count rose. Hopefully we can keep those counts up. He still makes regular visits to the hospital on "clinic" days for checks on his ANC, etc. and we expect that this will continue. We don't have any more information yet on dates for exploratory surgery. All this will happen after scans and 'restaging' occur. We are very grateful for all of the prayers and good wishes that we have received. They have definitely made a difference! Update 10/23/99 There are tears of joy in my eyes as I type this note. We are amazed at the wonderful results of the stem cell transplant. There is some discussion of allowing him to go home from the hospital NEXT WEEK!! He will have to return three times a week to get his blood checked and get transfusions, etc., but we are WAY ahead of schedule on the discharge. He is not able to take food by mouth yet. His throat seems to be still very sore, and almost anything that is not completely liquid makes him gag. Hopefully he will begin to take formula soon again. So far, all that has passed his lips is a tiny bit (would you believe it) of chicken soup and a couple of drops of grape juice. He is certainly returning to his former self very nicely. He has begun babbling again, reacts to special people normally and enjoys singing with all of us. We have tried to get him interested in creeping, but he does not like to be on his stomach very much, so we will keep working on this. There are plans for surgery to make sure that there is no residual bad tissue at the original site. I will let you know more about this as soon as it has been scheduled. Sandy |
