June 2, 1998
Yossi Chaim was extremely happy to participate this past Thursday in his Hebrew teacher's surprise party at school, via the speakerphone. He also finally got a "card" up on the wall, which means he has mastered certain parts of what they are studying in class. It was his first one this year!
Yossi Chaim walked home with Papa and Goldie on Sunday, the first day of Shavuos. He had lunch with us, took a nap, and played with his brother and sisters. He ate dinner, and spent the night. Monday he actually fought with some of his siblings, which was nice to hear!!! (Bet you moms and dads out there never thought you'd hear those words!) It felt so normal.
Monday night, things started to fade a little. Yossi Chaim threw up what he ate for dinner, and then he got real nauseous. Papa took him back to grandma and grandpa's house right after the holiday was over. (He really wanted to stay longer.) It was wonderful to have him home, but we really didn't want to chance it too much.
Yossi Chaim had a lot of fun playing Uno, and some games of Mancala. He also got a visit from two friends who live down the block. One of the hardest things about this weekend was keeping the other kids home from shul. They really wanted to get out and do things, but we tried to keep them isolated from other kids.
Please keep praying for him, as he still has a ways to go. His spinal tap came back with only 2 white cells, which is normal. He is still on the immune-suppressant drugs, and will be until he is (hopefully, G-d willing) completely weaned off by next February. If all goes well, he can begin to have his "shots" again next summer. (Right now his immune system is like that of a newborn baby.)
June 7, 1998
Yossi had a pretty good week. After a great day and a half at home (including sleeping in his own bed for the first time since January 12th!) he was a little tired. He also had some trouble with vomiting during the first part of the week. Papa took him to clinic Tuesday morning and his Hemoglobin was low. On Friday he went back to clinic and was given 'Epo' to stimulate his red blood cells. We are hoping that his Hemoglobin and other counts will come back up quickly, like they have done in the past. On Shabbos (Saturday) Yossi and Papa took a long walk, at least a mile. We forgot his sun block so we had to stay under the trees as much as possible, dodging what we called 'sun alerts'. Yossi did fine on this walk. Papa is planning on giving Yossi a little trim around his neck. The medication he is taking causes excessive hair growth. We are hoping that Yossi can come home for good sometime in early 1999! Keep up the good wishes for him!
June 21, 1998
Thankfully, nothing much has been going on around here. Yossi Chaim is still with Grandma and Grandpa, although he is getting homesick. We had hoped for him to come home for Shabbos this past weekend, but Chanie wasn't 100%, so he didn't.
The other kids start camp this week, so Mommy will be able to spend more time with him. Mommy is planning on doing school work with him. Hopefully he will be able to catch up on a lot of the work he missed.
July 1, 1998
There hasn't been a new update here in 10 days since nothing really has been happening, we are happy to say. Yossi is doing GREAT! He feels great, he looks great, and he is great!! Papa wasn't able to be with Yossi for almost 2 weeks since he was sick. Yossi was real glad to finally be able to see Papa yesterday. Yossi has been really enjoying his computer lately and spending a lot of time using it, even though it is a crummy Compaq which has given us nothing but trouble since we unpacked it and it's 'loose screw' from the box. Today at clinic Yossi's Cyclosporin dosage was cut again. His 3 month supply has lasted almost 5 months so far. Yossi even got the green light to go out of town for a day with Papa. We will decide for sure in a couple of days. Well, that is all for now. Please keep up the good thoughts for the Yossman as he continues on his long journey towards a total cure!
July 10, 1998
Well, it has been 24 weeks already since the transplant, almost a half a year! Slowly but surely things are improving. Yossi is feeling better and stronger all the time. His stomach can now tolerate most foods, in moderation. Yesterday, Papa gave him his first haircut since the Chemotherapy did it's work. All of the new and soft baby hair came off and now his hair is back to it's old coarse self. He really looks nice and healthy now. Yossi is enjoying spending more time with Mommy than he had in the past, as the other kids are in camp. Yossi has been using his computer so much lately that his hand and wrist have been hurting. He needs to lay off the computer games for a while. That is about it...
July 18, 1998
Yossi Chaim continues to do well, Thank G-d. He basically looks like his old self, with his haircut and all. The only problems that we are noticing (and these are not major) is that he walks like an old man. When we asked the doctor about that, he said that he needs to get some exercise. Grandpa and Papa are going to get him some stuff from Toys R Us, like a ball, etc.
Today, 2 of his friends came over, and they were running around on the front yard. So at least he is getting some exercise.
Yossi Chaim is not going to go back to school for this school year. Dr. Yanovich would like him to be home schooled for another year. We are trying to get him a video phone for school.
Yossi Chaim came home 4 days last week (while the "little ones" were in camp). He and Mommy played the new game, Starship Titanic. Both were very disappointed with the ending! But they had a great time playing together, and it was nice to have Yossi Chaim home, even if it was for a little while.
Compaq sent Yossi Chaim a new computer, and the old one went back. This one is only supposed to be a drop faster, but it works so much better! Yossi Chaim is very happy with it. Papa is putting on the stuff that YC originally had on his other one. There are a few things that are different, like it doesn't have a built-in speaker phone, BUT IT WORKS! As of right now, we are all very happy. Thank you Compaq.
That's all for now, no news is good news, right????
Please pray for some other children who are having upcoming tests/surgeries, and other problems...
Missy Trieb (Chaya Mintza Kaila bas Miriam) - going to MSK next week (she has a site-Missy) and Baruch Yosef ben Adina Batya - pray that his chemo works to shrink the various tumors, as well as Winnie's son Eric and Julie's daughter Elana. We also are praying for Yoel ben Zelda Yitta for a complete recovery!
Don't forget -- Yosef Chaim ben Breindle Leah!
July 26, 1998
This past end of the week marked the half-year point for Yossi Chaim's bone marrow transplant. We are extremely pleased with how well he is doing.
Last Thursday and Friday, Yossi Chaim was experiencing some headaches. His temperature was 99.5, which isn't considered fever, but made us worry anyway. It is probably from the last spinal tap he had. (Thank G-d he only has one left for now.)
This past Shabbos, Mommy slept over at Grandma and Grandpa's house, leaving Papa and the other 3 kids alone! Yossi Chaim was so happy to have Mommy with him. In the morning, Papa brought the others over so that Grandma could take them to shul (synagogue) like she does almost every week. Yossi was thrilled to have both Mommy and Papa at one time. Papa and Yossi played guns and other "boy" type activities. After shul, the kids all played together outside. First they had a ball that Papa would toss over Grandpa's house. Then they played frisbee. Yossi Chaim was running around and having a blast...Until he got hit in the leg with the frisbee. He got a small bruise and a small cut. We immediately cleaned it and put neosporine on it.
It seems to me (Mommy) that the worrying will never stop. Last week when he wasn't feeling well, it was "What's wrong?". His biggest threat to his life right now is infection. Now he's got a little cut, and we have to watch it extra carefully. Plus, we've all got in the back of our minds the fear of the "R-word" (relapse). My take on this whole thing is that it will never truly "be over". We are always going to worry, as once he gets past the transplant, there is the fear of relapse, secondary cancers, and a slew of things as a result of all the poison we had to pump into his body to help him.
Pray for Yosef Chaim ben Briendle Leah.
July 30, 1998
Yesterday, YossMan had a good clinic visit. His blood counts continue to be strong and all of his other levels are good. We found out that they will try to take him off of Cyclosporine at the end of August, much sooner than we thought. If they do and he stays well, he can begin getting his immunizations in March of 1999. Again, earlier than we originally thought. This is all good news. When he is finished with his immunizations, he can come home for good and go to school. So, the next few months will be very important as he needs to avoid getting any Graft vs. Host Disease when he is taken off of the Cyclosporine. We should have a large amount of the drug left over and Yossi wants to give it to someone who needs it, but maybe has a hard time paying for it, as it is very expensive. Keep up the good thoughts for Yossi Chaim, thanks!
August 11, 1998
Well, today is Day +200. A milestone of sorts. This second 100 days went a lot faster than the first, when we were waiting for the first bone marrow aspirate and biopsy to be done. That won't be done now, but on September 9th. The last (hopefully) of his 6 spinal taps will be next week.
Yossi continues to do well, apparently. Him and Papa are having a lot of fun on his new computer, particularly with a game called Moto Racer. So far Yossi still beats Papa each time, but Papa is closing in.
However, Yossi's isolation and exile are getting a little old. There does not seem to be any light at the end of the tunnel as far as his reintegration back into normal life goes. We had thought that once he starts getting his shots he would be at a stronger, more resistant level. But, his doctor says that preferably he should be away from other kids (including his siblings) for a few more years! This was very crushing to us. He is happy with Grandma and Grandpa and they take great care of him. But, we want him home. It doesn't get any easier as time goes on. He has been there for 6 months and before that he was in the hospital for over a month. True, the doctor said he could come home whenever we want. But, it is not worth taking a risk. It would be almost impossible for him to stay away from the other kids. There is no way to know when one of them might be getting sick. Once there are symptoms, it is probably too late. Maybe we are greedy. We acknowledge that fact that he has done great and stayed healthy. And, things could be A LOT WORSE! But, this is no life for a 10 year old kid. He needs to play and be outside and go to school and do all the things he wants to do. Well, enough for now. Please keep up the good thoughts and prayers for The Yoss Man.
August 14, 1998
The YossMans' blood counts continue on their slow but steady climb to solid normal levels. In 2 weeks they plan on discontinuing his Cyclosporine. Hopefully he will stay off of it for good. Yossi has a new tutor all set up for the upcoming 'School' year. He will be an official resident of the county as opposed to the city and will be in the 'partial', legal custody of Grandma and Grandpa. The advantage of a tutor from the county is primarily the amount of time they can devote to him. With some hard work, Yossi will be able to keep up with his level. He has a seperate tutor for Math and has really excelled in that subject.
The controversy continues to rage about Yossi's isolation. Every doctor and person, that we have spoken with, who has gone through this has told us that our doctor seems to be very excessive. It is a tough call, however. How can you argue with success? While many people have had to deal with fewer restrictions, many have also spent time in the hospital. Yossi has been so fortunate to stay out since his transplant, and we hope to keep it that way. We will probably keep things status quo and reevaluate the situation in the winter.
August 23, 1998
Not too much to report. Yossi Chaim's blood counts are fine. He had his LAST LP (spinal tap) last week, and everything came back fine. This week they are going to stop the Cyclosporine totally. Before he was at risk for acute GvHD (Graft Vs. Host Disease), meaning that it would happen in the first 6 months. Now they are going to watch for chronic GvHD. One thing that can trigger it is infections, which is just one more reason to keep him isolated.
We have done a lot of thinking on the subject of his isolation. We have spoken with a lot of other BMT survivors, as well as another doctor. Seeing as Dr. Y. only wants him to do well, survive, and have the rest of his life, the separation is bareable. It's been hard on ALL of us, Mommy, Papa, the other kids, as well as the YossMan and Grandma and Grandpa. But if the end result is that he will live to 120 (Please G-d), then it is worth it.
As far as school goes, we have arranged to have him tutored through the public school system. He will have a tutor for 2 hours a morning, Mon-Thurs. (We are going to use Friday mornings for clinic visits.) In the afternoons, he will hook-up with his class for Judaic studies via speaker-phone. This system worked very well last year. In fact, the phoneline was installed this past Friday. (Thank you Rabbi Klestzick for taking care of it!)
We have allowed him to have friends visit one on one, out on the porch. Yossi Chaim looks forward to these visits. The only thing that we ask is that the child himself not be sick, and that no one in the house is sick either. (This actually prevented Mommy and Papa from visiting Yossi Chaim two weeks in a row, since Chanie had a runny nose and cough!)
Keep him in your prayers, as this is far from over. Remember, the bone marrow aspirate/biopsy is Sept 9 (Chai Elul), the Hebrew date of his diagnosis last year. Then, we have the one year annniversary of his diagnosis in English - Sept 20, Eruv Rosh Hoshana (The Jewish New Year). - Mommy
Oct. updates Nov. updates Dec. updates Jan. updates (second half) Jan. updates Feb. updates Mar. updates April and May updates