Nov 2, 2000
Nov 6, 2000
Nov 9, 2000
Nov 11, 2000
Nov 15, 2000
Nov 18, 2000 Nov 21, 2000 Nov. 30, 2000
This is a very hard update to write for a number of reasons. First of all, we are trying to schedule the surgery to remove Yossi's appendix. In case you don't remember, I will remind you... Last week Yossi was in the hospital for his fever. On Shabbos, the doctors thought that he might have appendicitis. So they did a CT scan, and watched it. He got better, and was allowed to eat and resume normal activities. Now that he is out of the hospital, and feeling the great, our Hem Onc doctor wants to have his appendix removed. His feelings are that the chemo irritated it. If he gets another round of chemo, he could G-d Forbid get a full-blown appendix attack, and with no counts, it would be a total disaster. Therefore, in order to avoid this situation, he feels it needs to come out. He also spoke with other doctors around the country. We also feel we would be more comfortable knowing that we don't have this hanging over our heads. The problem? The surgeon won't do it. He doesn't feel it is necessary. What I don't understand is that the surgeon is not a oncologist. How can he saw NO when the oncologist said this needs to be done? I wonder how he would feel if it were HIS child's life on the line. Meanwhile, there is no pediatric surgeon to operate on my son. So our doctor is looking into a regular surgeon to do the surgery. And we are all hanging around trying to figure out if we do surgery or the next round of chemo.
Yossi Chaim's hair is falling out like crazy. If he tries to brush it, the brush is full of hair. His clothes are covered in hair, and he is coughing a lot. We suspect that he is getting hair in his mouth. To make things a little easier for him, Papa shaved his head. OIY, OIY, OIY! Yossi was very disappointed. He looks like a cancer patient now. I stole a term from my cyber-friend Elaine, and called him a Cancer Warrior! And boy is he! He has a bunch of black spots where the hair hasn't quite fallen out yet. Papa and Grandpa went out and bought him two new baseball caps, a Jets cap (his favorite team), and a Yankees hat (but of course!). It is so sad to see him now, because before you could fool yourself into thinking that he was really OK. Now there is no denying it. My son has cancer.
On a different note, totally off the subject, I urge everyone to vote next week. Lets get some people in office who will hear our cry, and give more money to cancer research, especially childhood cancer. Childhood cancer is still the number one KILLER disease of children under 15. If I got this correct, approximately 7000 families will have their worlds destroyed when they hear the words "Your child has cancer". How many more families are going to suffer before we get a cure for our kids? How many more kids are going to find their final cure in the next world? When are we as parents going to say ENOUGH to everyone, and demand a cure? So much time and effort are spent on other causes, and yet our future is being torn away, and our children (all of them, siblings included) are having their childhood stolen away from them. Children shouldn't live in a world where friends die, where pain and hurts are part of the normal life. Where you take a family picture, and wonder if this is the last time you will have ALL your kids together. IT'S ENOUGH ALREADY!
Pray for Yosef Chaim ben Breindle Leah.
Nov 6, 2000
Real short .... We really don't know anything yet. I know this sounds crazy, but we are supposed to get a phone call from the surgeon's office tomorrow, and hopefully we will get the surgery done this week. He was supposed to look at Yossi's scans today. Soooo, I still don't know.
Yesterday, Shauly got a haircut, and he begged Papa to give him a "buzz". He really wanted a "zero" (using the razor to get rid of all his hair", but Papa gave him a one instead. Goldie really begged and pleaded with us, until we gave in, and let her do it. She looks absolutly STUNNING. I don't just mean beautiful, I mean she is a total knock-out. It makes her face stand out. Today a lot of people in school have asked her if they could rub her head. She might have started a new trend. Who knows. I took pictures, and hopefully will be able to post them soon!
Until I know more, keep praying for Yosef Chaim ben Breindle Leah, and our cyber buddies child, Baruch Yosef ben Adina Batya, who is getting his port taken out on Thursday.
Nov 9, 2000
Well, now we are getting somewhere. We have a surgeon who will operate on Yossi Chaim next Wednesday. Dr. DeMaria will do laproscopy. He told Papa of several complications that could occur. It could be that it wasn't his appendix, it was this typhlitis thing. But Dr. DeMaria doesn't think that. If the appendix shows no sign of every being irritated, it's not coming out. This surgery should be same-day surgery. We can start chemo again the following Monday. Papa was very happy with the surgeon, and we are all glad to be getting this done.
Pray for Yosef Chaim ben Breindle Leah
Nov 11, 2000
Tonight I am turning over the keyboard to the YossMan, and he will write his own update. (We had such a cool visit with a special person.... I won't spoil it for him.)
Today started off pretty normal, I was coughing a little bit but I was feeling pretty good besides that. So after lunch my grandparents came over because we were having special company. That special company just happened to be David Baldacci. We had met at a speech I was making to encourage people to donate bone marrow. He was also speaking. And after the speech we talked (he asked me to sign a book for him) and that was that.
So when I relapsed my mother got in touch with him or his office. Anyway, Thursday we get a call that he was coming for a book signing and that he wanted to visit me. So that brings me back to this afternoon. When he came he gave me his latest book (signed) "Wish You Well" and a hat that says Wish You Well By David Baldacci, and on the back it says Yossi. So we got to talking and we talked about the election, and about school, just about normal stuff. Then he asked me if I liked Harry Potter, and of course I said yes. He said that he had called England and had gotten me a 1st edition Harry Potter and the Goblet of Fire Signed by J.K. Rowling herself. I was ecstatic. I couldn't believe my ears. My friend Yonatan (who had dropped by earlier) and I were practicaly jumping for joy. Then after that we just talked about more stuff, but his assistant said he had to go to another book signing, so we said goodbye and that was that.
Then I went and played at my friends house, and then I went to synagogue and then I wrote this. So overall I had a very good day.
It was a wonderful visit. My in-laws were over, too. Mr. Baldacci is a wonderful person. It was such a pleasure to see him again. Yossi gave him and his assistant Deborah gold ribbons. It turns out that Deborah is herself a cancer survivor. Yossi had a smile on his face that could light up a room. They talked about all kinds of stuff ... politics, football, you name it. (One really cute thing Yossi said was that he didn't want to be a politician because it's too risky and costs too much money!)
I am not planning on updating the site until Wednesday after Yossi's surgery, unless anything happens. Soooo... see you then!
Continue to pray for Yosef Chaim ben Breindle Leah. Please give some extra charity in Yossi's merit on Wednesday to help him during his surgery. Thanks!
Nov 15, 2000
Well, it's amazing the way they do stuff now-a-days! Yossi went in this morning, and they took him around 8:30am. I got a phone call not long after 9am that they were done, and he was speaking to me from in recovery around 10am! I arrived at the hospital not long after that with a nice surprise for theYossMan -- Bubby was with me! He was happy to see us. He was doing great, laying very calmly, talking and feeling generally OK. Then, it was time for him to go (a mere one and half hours in recovery!). Yossi had to get dressed. We got his pants on him, and he was in terrible pain. It seems that when they do laproscopy, your shoulders hurt. He was crying, and saying it hurt. He calmed down, and we tried to finish dressing. After we got him totally dressed, he was really hurting, crying for more pain medicine. Since he didn't want a shot, he got more Tylenol #3, and they sent us on our way. Unbelievable.
Yossi was told to take it easy today, so I allowed him to gel on TV. He sat there from the time we got home (around noon, with a stop at Blockbusters for a video -- Pokemon 2000, what else?) to right now as I type this. You would think his eyes would turn square from watching so much! But he is happy and comfortable, and that is all that matters.
Right above the most recent updates is a link to gold ribbon pins for childhood cancer awareness. We are selling them as a fundraiser locally, as well as where my mom lives. If you would like to get some pins, and are local, you can email my friend Ruby at Neshama53@aol.com or my other friend Barbara Ben-Meir at Bben2@aol.com. They can get you pins. If you don't live near us, and would like to get pins, you can get them from Gigi Thorson at her site (see the link above). The pins are beautiful, and we love seeing all the people show their support for childhood cancer. If anyone is in the Washington area, there will be the first ever tree lighting ceremony. You can find more information for it on Gigi's site.
Keep praying for Yosef Chaim ben Breindle Leah. He starts his next round of chemo on Monday. (One day in clinic, and then once a week shots of vincristine.)
Nov 18, 2000
Yossi is feeling better from his surgery. When ever he eats, he gets bloated. Yossi Chaim has been taking it easy these last few days, watching a lot of TV. He got to see Pokemon 2000, and he says, "It was a really, really good movie. It was a lot better than the first one. I recommend it."
Papa took Yossi to Toys R Us on Monday, and he bought himself a model. It's a Gumdum Wing Model. He spent a lot of time tonight working on it, and he is really proud of it. Yossi also had his close friend Yonaton come over, and they played this afternoon, and tonight. That's about it... short update, but that's good.
Keep praying for Yosef Chaim ben Breindle Leah.
Nov 21, 2000
HHhhmmm, where to start?... Well, my mom and I took Yossi to clinic on Monday. He got hooked up to his IV, and once he was all settled in, I went on some errands. Yossi and Bubby were lucky... They had expected to be at clinic all day, but they were able to leave a little after 2:00. This round is not going to be as rough as the last round. He got cytoxon again. This time he got vincristine, and he will get it once a week for the next 3 weeks. He is also taking a month's worth of decadron. Decadron is a steroid that causes the puffiness associated with chemo. It makes Yossi very irritable and hungry. I am very happy he will only be on it for a month!
Bubby left to go home Monday night. Yossi stayed home because he was too tired to go. Yossi also stayed home from school today for the same reason. He is going back down to clinic tomorrow to do a test that forgot to do yesterday.
Please continue to pray for Yosef Chaim ben Breindle Leah.
Nov 30, 2000
There really hasn't been that much going on. The cytoxon has really tired Yossi out. On top of that, he got real bad mouth sores again Thanksgiving weekend. We thought that Sunday he was done with them, but now they are coming back with a vengeance. Yossi has this medicine we call "swish and spit" because that is what you do with it. It is a cocktail that has lidocaine in it. However, as soon as it touches the sores, it stings or burns, so Yossi doesn't like to do it. I can't convince him that it will burn for a few seconds, and then he will have a while of relief. He is supposed to do it 4 times a day, but I am lucky if he does it once.
Yossi is also getting weekly vincristine shots. One of the side effects is leg-cramps. He was woken up two nights ago in terrible pain. There isn't really anything they can do for it. He needs to walk around, and again, it's so hard to get him to do it. It hurts him to walk around, but this will make him feel better.
Right now he is due for two more vincristine shots, one each Monday for the next two weeks. We were hoping to go to New York to visit some of the Rebbes (great Rabbis) up there to get blessings for Yossi. We had originally hoped to go the second week in December. But the baby just had surgery this past Monday, and he can't travel. (I will put an update on his page.) Yossi also wants to attend the school's Chanukah carnival on the 14th. We were then hoping to be able to go the week of the 18th, but Yossi needs to get chemo that week. So for right now we are staying put. Yossi is going to get chemo the 18th, and it is the same aggressive one we did the first time. Yossi was invited by Chai Lifeline to go on the Disney trip again. They are going in January. I hope that his counts will recover enough so that he can go. It's four weeks after the last round. I guess that when he gets back from Disney we will do the tests to determine how the chemo is working.
UNBELIEVABLE NEWS! My father-in-law just called, and he is a 5 out of 6 match for Yossi. He was never tested 3 years ago, because he was told he had hepatitis. When they did the test now, it turns out that there are no hepatitis antibodies. Kinda makes us wonder what would have happened if they had used my father in laws marrow vs Neal's marrow. But, if we had done that, we would have never met Neal! And everything is Divine Providence, so that is what was meant to be. What this means is that if they can't find a suitable 6/6 match for Yossi, we would use my FILs marrow! Cool, huh? Keep praying for Yosef Chaim ben Breindle Leah.
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