April 9, 1999 May 15, 1999 June 13, 1999 June 24, 1999 June 30, 1999 July 2, 1999 July 29, 1999 August 6, 1999
Day '+441'
Yossi is still doing better and better all the time. He came home for hopefully 2 weeks on March 28th. As of today, he has been able to stay home for all but 12 hours. His brother had a fever for a few hours, and Yossi was whisked back to his 'safe house' for a night, but came back the next day. He will stay through Sunday and then go back to Grandma and Grandpa's house until June. Hopefully he will come back most weekends. We are all really getting used to having him home again. He went to clinic today and has been discharged from the bone marrow clinic. He now only needs to come to the regular Pediatric Oncology Clinic once a month for blood counts. He is having another bone marrow aspirate/biopsy on May 14th. At that time he will have another round of immunizations. However, the bone marrow transplant doctor said he is still immune supressed until he finishes all of his immunizations, culminating with the 'live' vaccines. That will be next January. Yossi's blood counts are fine and he feels great. He has gotten a lot of exercise since he has been home (and I guess not a lot of food!) and he has lost a few pounds that he has put on just sitting around for the last 18 months. He will be able to go to camp in the summer and to return to school in September, after 2 years away! His port-a-cath will stay in for the time being. This makes Yossi very happy as he will not have to be 'stuck' in order to have his blood taken. It will have to come out, eventually, in order to prevent infection. We just have to keep hoping and praying that he never has a relapse!!!!!!!!!
Keep praying for Yosef Chaim ben Breindle Leah.
Day '+477'
Yossi had his 4th bone marrow aspirate/biopsy since his transplant, yesterday. So far, the results show NO blasts at all in his marrow. This is great news! This time the procedure and clinic visit went pretty smoothly and quickly. Anesthesia came on time and everybody was ready. This time, Yossi needed about twice as much anesthesia as before. After the procedures, and while he was still under, they gave him 5 immunizations, in the same general area as the bone marrow, so he is quite sore. When he finally woke up, he said that he was dreaming of Lego! His blood counts were also very good. He has a small rash under his neck, and they gave him a prescription for it. But, he continues to do very well and is on schedule to return home for good next month. He came home Thursday night for his semi-usual weekend stay at home, but had to leave that same night since his sister came down with a fever. So, we missed him at home this weekend. Hopefully next weekend will work out better. Keep praying for Yosef Chaim ben Breindle Leah.
Day '+506'
Yossi went for his once-a-month clinic visit on Friday. Most of these are just for blood counts. Once again, his counts were very very good. He does have a rash on his neck that will not go away. The doctor told us to try something else, which will either make it better or WORSE. If it makes it worse, they will know what it is and treat it with something else. It doesn't really bother him, which is good. Yossi is scheduled to come home to stay in 5 days! He has been coming home most weekends for a while and has finally become acclimated to life at home again. Only one more week of school for him this year. In September he will go back to school for the first time in almost 2 years. The doctor told him he needs to get a lot of exercise this summer, and not just with his thumbs (Game Boy). He will go to camp in July and August for a couple of weeks. Grandpa and Papa will either take him there or pick him up when it is over. Every day that goes by with Yossi doing well is one more step to final recovery. Keep up the prayers and good thoughts, please.
Day '+517'
Yossi Chaim had a small pimple near his eye yesterday (June 23rd). Dr. Koenig was kind enough to come all the way out to our house to check him out (to save us a trip to the ER). It was a sty (she thought), and we put in anti-biotic drops and started him on warm compresses. By this afternoon, it had spread all around the bottom of his eye, near his nose and his lip. All on his left side. OK everyone, let's all say it together, Yossi Chaim has Shingles. Of course I didn't notice it around his face until 3:45pm--and clinic closes at 4:00pm. So, Papa took Yossi down to the zoo, otherwise known as the MCV emergency room. After waiting more than 2 hours, he was finally seen. The plan is/was to admit him. Sooo, what's the problem?-- there are no beds. They called up to the BMT ward, also no beds. The plan was to move some teens off the children's ward. So, as of now, Yossi Chaim is still sitting on a gurney down in the ER, waiting to get to a room. They started him on IV Acyclovir. He will probably be in-patient for 3-7 days. Shingles in and of itself is not a problem. The problem is that with any infection in someone who is still immuno-compromised, you run the risk of it getting out of control. Also, infection can trigger graft vs. host disease. Grandma is staying with him tonight (no challah baking tomorrow, sorry!). Pops will stay with him tomorrow. We will take it from there.
Please continue to keep Yossi in your prayers... Yosef Chaim ben Briendle Leah.
Day '+523'
Yossi breezed through his hospital stay and came home Monday night! Grandma stayed with him the first night and Papa stayed with him from Friday night through Sunday morning, including sleeping both nights. The 'boys' had a great time. Yossi felt almost fine and when he did have some discomfort, the meds he got put him to sleep. Yossi and Pops stayed up late both nights talking about all kinds of stuff. Yossi had not been on that ward since December 1998. Some of the nurses remembered the Yossman, but although he didn't remember them he pretended that he did. Yossi was in quarrantine and wasn't allowed out of his room. The doctors originally warned that his Shingles could lead to something else, even the dreaded GvH (Graft vs. Host disease). However, Yossi is doing fine. He does have to go back to the eye specialist tomorrow to make sure his eye is ok. His face still looks pretty bad, but it doesn't hurt or itch. He jokes that he is 'Two Face'. Shingles follows a nerve, so it is only the left side of his face that is affected. It is good to have him home again so soon. That is about it.
Please continue to keep Yossi in your prayers... Yosef Chaim ben Briendle Leah.
Day '+525'
Well, another crazy, eventful Thursday night at the ER! Thursday night, Yossi started running a fever of about 101. Dr. Russell said to take him to the ER to be checked out. So, Papa, Grandpa, and Yossi drove down. This week we got there much later than last time, about 10:00. Luckily we were brought right back and were seen almost right away. UN-Luckily the lab lost some of his blood and that kept us there until after 2:00 am. They checked Yossi well, drew blood, and gave him an IV antibiotic. But, the best part was that he got to go home, even though this time we packed a bag for him. Everything looks pretty good, and it may be something left over from the Shingles, or maybe just a normal childhood fever. This morning he was still running a fever and the doctor said to watch him closely. He seems to feel pretty well, considering he did not go to sleep until almost 3:00 am. They were very nice to him at the ER and the doctor brought him a brand new TV/VCR combo and "A BUGS LIFE" video. Papa and Yossi also played his new Pokemon Pinball game. His face is clearing up from the Shingles. Hopefully his fever will go away and we all can enjoy some peace, quiet, and rest on this 3 day weekend.
Please continue to keep Yossi in your prayers... Yosef Chaim ben Briendle Leah.
Day '+552'
It has been a somewhat quiet 4 weeks since the last update. Yossi's face had pretty much cleared up, but the itching got worse. The nerves inside were itching, so it was pretty impossible for him to satisfy the itch. We tried different medications, but they didn't really help. Then, on the 19th his Shingles returned! This time they decided to not put him in the hospital, but to give him a very high dose of Acyclovir by mouth at home. This time his face did not get so bad. He would get a new 'shingle' or 2, but then it would go away the next day. He is still on the medicine, and will stay on it for 3-6 months (at a lower dose). This recurrence of the Shingles caused him to at least postpone his camp trip. Right now we are still not decided if he will or can go to the last week of the camp. The doctors are supposed to decide today if he can go on Sunday. Then, yesterday he got 3 nosebleeds. We were worried that his platelets may be low. He had his blood counts checked at clinic and everything is fine. The doctors think that the only reason the Shingles haven't exploded all over his face like last time is due to the medicine. They want to come up with the right dosage to keep them away. Last night Yossi finally got to go see Starwars. He really liked it and now says he isn't interested in DragonBall Z anymore.
Please continue to keep Yossi in your prayers... Yosef Chaim ben Briendle Leah.
Day '+560'
These past 10 days have been crazy! He was supposed to go down to clinic on Monday for them to make a final decision on whether or not he could go to camp for the last week. While his doctors felt he was doing well, the camp doctor didn't want him to come if he was still on the high dose medication. To him, that meant he was still contagious. So, ironically, if he couldn't go to camp it was for the safety of others, not himself. Anyway, on Sunday Yossi, Papa, Goldie, and Shauly went to a baseball game. While there Papa noticed that Yossi was getting some suspicious looking bumps on the other side of his face. By the end of the day, he had more so we called the doctor, who admitted him to the hospital. They got him started on the high dose IV Acyclovir. However, on Monday they were beginning to doubt that this new outbreak was really the shingles. They had dermatology and infectious disease in on the case and no one could really figure it out. So much for doctors! Well, they discharged him on Tuesday and gave him a portable IV pump that he had to wear 24 hours a day. He got some more bumps on his face Wednesday so on Thursday Grandpa took him down to dermatology who decided that it wasn't shingles and discontinued his pump. They think it is more like a common irritation, something similar to cradle cap! Well, who knows?! He still has to take the low dose acyclovir orally for at least 3 months to make sure the original outbreak of shingles doesn't return. So many plans have been cancelled or postponed this summer because of the shingles. We hope to get away for a couple of day trips starting next week.
Please continue to keep Yossi in your prayers... Yosef Chaim ben Briendle Leah.
Keep praying for Yosef Chaim ben Breindle Leah.
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