Here are the March 2001 updates.


a href="#Mar 1, 2001">Mar. 1, 2001
Mar. 2, 2001
Mar. 3, 2001
Mar. 4, 2001 AM
Mar. 4, 2001 afternoon
Mar. 4, 2001 PM
Mar. 5, 2001 9:10 am CST
Mar. 5, 2001 afternoon
Mar. 5, 2001 PM
Mar. 6, 2001 AM
Mar. 6, 2001 afternoon
Mar. 6, 2001 PM
Mar. 7, 2001 afternoon
Mar. 7, 2001 PM
Mar. 8, 2001 AM
Mar. 9, 2001 AM
Mar. 9, 2001 PM-ish


Mar. 1, 2001
Day + 30

What can I say? My heart is just overflowing with pain and anguish! A lot of it is for Yossi and some of it is for all of us. The doctors here rotate, and yesterday was Dr. Orchard's last day of this rotation. Dr. Orchard was a kind and fatherly type of doctor, very easy to talk with and express our concerns. We also lost the fellow, Victor. Again, a wonderful, kind, and compassionate person. Now we have Dr. Kersey and Jakob. While I am sure they are both wonderful doctors, I personally don't like them as much as the others. It might have been their personalities, or I don't know what. They walked in with very sour faces, and when I tried to ask questions, Jakob told me to wait until after they finished the exam of Yossi. Then they proceeded to tell me that they couldn't take the tube out for 3 reasons. First, the thing on his face is very concerning to them. They suspect that the fungus infection has spread through his whole body. They pointed out the sores on his fingers which made me very mad. I SHOWED THE DOCTORS THIS TWO WEEKS AGO! Then then tell me that you always have 20-20 vision in hindsight, but this isn't hindsight. I have pointed it out to every doctor who has walked through this door fearing it was a fungus! Next they are very concerned because Yossi is having a lot of bleeding from his stomach and his mouth. In an attempt to control the GvHD they are going to give him ATG. (I don't remember exactly what the letters stand for.) I have asked several times about MMF, but I've been told that they know for sure that ATG will work and MMF is still experimental. I have also asked several times about Zenepax, but I think that this is the medicine that Yossi wouldn't qualify for since this is his second transplant. They are also going to add amlodipine to his meds to help keep his blood pressure down. The final problem is the kidneys and that they still aren't functioning.
The final kicker to this conversation was the comment about "... how very sick he is". Remember, this is Dr. Kersey's first visit with Yossi. I relpied, "I know, I've been with him for the last 3 weeks." So I am really dreading the next 2-4 weeks as far as the doctors go. I also told them not to give up on Yossi. He has pulled through before when he wasn't supposed to. They said that they weren't. Maybe they are so hardened from all the death and sadness they have seen that they have no room in their hearts to offer hope. I don't expect them to come in and tell me he is doing great. I know the truth. I can see it for myself. I don't need ANYONE to take away my hope, because that is all we have left. There are kids who have made it who doctors didn't think would, and I am sure that there are some who didn't make it who the doctors thought would. Statistics mean nothing. It's 100% survival or none.
I am trying so hard to be strong for him. I speak to him, and play him tapes and such. Tonight is exactly 7 weeks until his birthday, and I sit here crying because he might Chas V'shalom, G-d forbid, not be here to celebrate it. Life is so fragile, but I see it so clearly now. I keep going back and forth... he is going to make it, and the opposite thought. The pain is so unbearable. It weighs on me from the time I wake up until I go to sleep. I look at him, and see the horrible things inflicted on his body, and I can't help but cry. Why??? Why??? Why??? It's not fair! I want him to be cured and put this so far behind us. I want to go home and see all my friends. I am so homesick. I want my old life so bad! I want my "tzadikkel" back! I want more than anything in the world to hug him and hold him. I want to talk to him about the book he just read. I want my other kids to have a normal life again. Chanie told me the other night that "This is the saddest thing that has ever happened in her life." That's a very strong thought from a six year old, because it's the same for me, Michoel, my in-laws, my parents, all of us. I can't think of anything more cruel than having to sit and watch a child suffer. I so much wish I could take this all away from him. I want to kiss him and make him all better like when he was little and feel down outside. This is so abnormal. It's no way to live. I sit here because I fear it could be the end, and yet I want to run away and bury my head in the sand. Why isn't G-d tired of our tears yet? When my babies cry, I can only listen for a few minutes before it rips my heart apart. Hashem (G-d) is our Father, it is time for rachamim (mercy). Yossi has sufferd enough. I want him back 100%. I've always believed that you pray for it all, because this might be the time G-d chooses to answer you. Hashem, please give our family the simcha (joy) that is so lacking in our life now. This is the month of turn-abouts. It's time NOW to turn Yossi's fate around. I know that it is always blackest before the dawn. Trust me, it's very black here.
Please continue to pray for Yosef Chaim ben Breindle Leah. Give charity, do acts of kindness.
One more thing, here is the shot of Yossi with Avraham Fried when he came to visit Monday morning. Yossi and Avraham Fried


Mar. 2, 2001
Day + 31

What Yossi has is a fungus infection called Aspergillus Flavus. It is confirmed that it is on his face. He also has spots on his lungs, his eye, and his GI tract which they assume is the same fungus infection. The BMT doctor, Dr. Kersey said that in all his years of being a BMT doctor he has never seen someone survive this. They are guessing that he has a couple of days to a week left in this world. We are so terribly disappointed. Today is exactly 7 weeks until his Bar Mitzvah. This is a very bitter pill to swallow. We have done everything humanly possible. It is truly up to G-d to spare him for us.
Today we put on his tefillin for probably the first and only time. He looked like such an angel laying in his bed, so pure and holy. Both Michoel and I broke down while he was saying Shema with him. We still hope and pray that Yossi will be the first to survive this, but we are also being very realistic.
Please Hashem, let us keep Yossi! We are not yet ready to return him to You. He is our source of inspiration and the light of our life. His kindness and light shine out so bright. We need him here with us.
Yosef Chaim ben Breindle Leah needs all the human help he can get, through prayers and acts of kindness. He also needs the help of Hashem to beat this. We pray that Yossi will have the inner strength he so desperately needs.


Mar. 3, 2001
Day + 32

This Shabbos was absolutely horrible for Michoel and me. We spent most of the time crying about how sick Yossi is. We were so depressed about facing the possibility of a life without him. He is our “bachor”, our first born son. It is worse than a knife digging into my chest. This pain of watching him waste away is ripping my heart out. I finally climbed into bed with him last night, and snuggled up to him. Of course, he was sedated and he didn’t even really know I was there. I don’t care what any of you say, when I snuggle with Yossi, he snuggles back. This was like lying with a pillow. He just lies there. It’s not the same. I am sure it makes him more comfortable, but it doesn’t make me feel better. Yossi himself was made comfortable today by loads of morphine and versed. Dr. Kersey spoke with us about a DNR (Do Not Resuscitate) order. We told him that we couldn’t do anything without speaking to our rabbi after our Sabbath. Then the renal doctor came in. Apparently, if we agree to a DNR, they will stop doing dialysis. So that basically decided against that. We want Yossi to be as comfortable as he can be in his final days. If we stop dialysis, then he will fill with fluid. When this has been happening, he is terribly uncomfortable. So that is why we are going to continue with dialysis through the end.
This afternoon, my uncle came in from New Zealand. He is very upbeat and feels that Yossi will beat this. We sorta feel this is a false hope. This morning when I checked the YossMan, he has a lot more lesions. The ones he has from yesterday are getting larger. This is an indication that the fungus is in blood. Last night Yossi got a shot of amphotericine into his eyeball to help fight the fungus in his eye. *OUCH* Yossi didn't feel a thing because he was heavily sedated.
My friend Chanie told me that she asked G-d to cure Yossi so the whole world would know that G-d made a miracle. Chanie, from your mouth to G-d's ears! So many people pray for him, and offer good wishes. G-d is going to make a lot of people very disappointed if He doesn’t cure him, Chas V’shalom (G-d Forbid).
We are preparing of the worst, and still hoping G-d has other plans for Yossi.
Keep praying and doing good deeds for Yosef Chaim ben Briendle Leah.


Mar. 4, 2001 AM
Day + 33

Something from Mayo Clinic Site (www.mayoclinic.com)
"Antifungal agent caspofungin approved
The Food and Drug Administration on Jan. 29, 2001 approved caspofungin (Cancidas) as an antifungal treatment for people who are unresponsive to or can't tolerate standard therapies for the treatment of invasive aspergillosis.
Caspofungin is the first approved echinocandin (a new class of antifungals that are thought to work by disrupting the creation of fungal cell walls). It is given as an intravenous infusion.
Invasive aspergillosis is a term that refers to a group of fungal infections caused by the fungus aspergillus. The fungus ordinarily does not cause infections in healthy persons, but may be life-threatening in individuals with weakened immune systems.
Reported side effects of the medication include fever, headache, nausea, vomiting, rash, skin flushing, mild liver function test elevations and complications in the veins used for infusions. Clinical data indicate that it works in 50 percent of people who receive it."

Please continue to pray for a miracle for Yosef Chaim ben Briendle Leah.


Mar. 4, 2001 afternoon
Day + 33

The fellow here, Jakub did a lot of work, and he got Merck to approve the medicine for Yossi. It is experimental. At this point, I really don't care. I am willing to try anything. Right now they are trying to work out a way to get it here to him so we can start him on it today.
This afternoon the doctors came in to examine Yossi. His left eye has the doctors very nervous. The pupil is smaller than the one in his right eye. The doctors suspect that the fungus infection is in Yossi's brain, and it will have caused brain damage. The only way to know this for sure is to do a CT scan, but they don't feel that it is worth it. They don't want to put Yossi through it since it wouldn't alter what they are doing for him.
I still remain hopeful that Yossi will get his miracle from G-d. But I still remain afraid that Hashem is going to ask for his gem back. I am not ready to give him back. I know that all we have is a gift from G-d. I WANT TO KEEP MY GIFT. I love Yossi more than anything in the world, from now to forever, as me and Yoss say. I just want my YossMan back. There is so much he hasn't seen or done, although he has gotten to do a lot so far.
We still need to keep praying. Miracles happen everyday that we don't recognize. The fact that our bodies work so well; the air we breathe; our children; all the other gifts we have, food, shelter, jobs; we shouldn't take anything for granted. Keep praying for Yosef Chaim ben Breindle Leah. He is hanging in there, but it must be so hard for him. I know it is for us.


Mar. 4, 2001 PM
Day + 33

This time 13 years ago, I was very pregnant, and excited about the upcoming event. I was attending childbirth classes, exercising, and having a lot of fun. At night I would lie in bed, and just feel the baby move. I knew Yossi was a boy from around the second month on. After Yossi was born, he filled our lives. Our lives revolved around Yossi. Infact, when he was 9 months old, the pediatrician scolded me for letting him stay up as late as he wanted. She told me that 1am was way to late for him, and to get him to go to sleep earlier. Using the "cry it out" method, Yossi taught himself to go to sleep earlier. I have a mental picture of him lying in his crib, just lying there, with his eyes open.
Yossi was an incredibly happy child. He always had a smile on his face. He always shared with other kids. This past summer when Yossi went to Camp Simcha, he would go to the canteen every day. He would get the two snacks he was allowed to get. One he would eat, and the other he stashed away. He did this so that when he came home, he would have treats to give the other kids. This is Yossi.
I look at him lying in this bed, and I know that is not him. He has a bump on his forehead that is swollen and filled with the fungus. His left eye is bulging out, possible with fungus in it. His right check is unrecognizable, so swollen and black. There is a tube coming out of his nose and also out of his mouth. The tube out of his mouth is taped down to hold it in place along with a bite block (so Yossi doesn't bite down on the tube and cut off his air). His shoulder continues to ooze blood. His belly is swollen and distended, probably from the blood that is accumilating in his gut. Bryan, a fantastic nurse who has loved Yossi and cared for him these past few days, says that it's because Yossi's bowels aren't working. All over his body the black spots are taking over very quickly. Yossi's lungs are sounding course and when they suctioned him this afternoon, they pulled out blood. There is blood coming out of his stomach and his rectum. Yossi's legs have withered away, and are covered with sores from where the blood pressure cuff has been placed. His blood pressure is low. Yossi is getting almost round the clock transfusions. As of this morning, he has had 146 of them! He is rapidly deteriorating. This is not the real Yossi.
On Thursday, I hung a group of pictures up on the nurses wall in our room. (There is a dry-erase board where the nurses store all their information.) I wrote about it, "This is the REAL Yossi." I want them to see his beautiful smile that lights up a room. I want them to see who he really is. Although I still hope for a miracle, I know that Yossi is basically gone. At least the Yossi I remember.
Yossi loves his friends. He enjoyed playing with Yonaton and Ari, as well as the other boys. He also loved to play football with all his friends. One of the things Yossi was most proud of this year was that his body was finally starting to get back into shape.
Yossi was always so glad to see me. One of the sweetest sounds I would hear in school was "Hi Mommy" when Yossi saw me. He was never embarassed, even this past year, when I would kiss him in the hall in front of all his friends. In fact, Yossi came up to me for a kiss.
When Yossi was born, he was a beautiful baby. All the women in the nursery commented on how beautiful he was. I sob at the thought that G-d gave me this perfect baby, and I am returning him so damaged. I know that it is because of the disease he gave him, but I guess that is the perfectionist in me. I know in my heart that G-d has a plan. I will never understand why he and all of us have had to suffer through this. Yossi never questioned "Why him", so I won't question "Why US". You have taught us all so much.
A few months ago, when Yossi relapsed, I spoke with him about death. I wanted to see if he had any fears, of if he wanted to talk about it. He didn't really want to talk about. The only thing he told me that he thought about was how hard it would be on all us. He told me that he thought we would be too sad.
Before I end this update, I would like to write a letter to Yossi...
My dear, sweet, Yossi,
I love you, Yossi, with all my heart and soul. I know how much you love me. I wish I could have taken all this pain away, you know that. I wish I could kiss your check one more time, and feel you kiss me back. I miss your hugs. I am so sorry Yoss that you had to go through this. You know that one of my favorite things was to lay with you and cuddle. I know that after you are gone, you won't suffer anymore, and that is of some comfort. It is just that I am selfish, and that is why I want you to stay. For me. I know that this transplant is what you wanted, and you tried your best. You have always been a really good boy. I am truly blessed to have been your mother. I know that we will see each other again. I am anxiously awaiting that day. Until you leave this world, Papa and I are staying by your side, laying with you, trying to make you as comfortable as possible. We are both so very proud of you. I love you Yossi, now and forever!
Love, Mommy


Mar. 5, 2001 9:10 am CST
Day + 34

My wife literally moved mountains yesterday and made sure that Yossi got this new, experimental drug as soon as possible. With lots of help from the Fellow, Jakub, it was located in Wisconsin and Yossi got it late afternoon. It is his last hope. This morning it appears that there are no new lesions, and the ones he already has don't seem to have grown any. Could it be working, could it be the miracle that Leah keeps saying will happen? No one knows yet. In the meantime, Yossi continues to hang on, somehow. We all fear that even if the medicine will work, it may be too late to reverse the damage the fungus has already caused. Add to that his other life threatening problems, and the situation is still very grave. I go to sleep at night feeling that I will be woken to Yossi's final moments alive. My dreams are all about Yossi, all night. I have tried very hard to make my peace with what seems inevitable, but it is way too hard. I have spoken to Yossi and told him not to worry about Mommy and I, and just do what he needs to do. If he is ready to go, he can go, and not to prolong his suffering because of us. I have said some prayers with him that I was advised to say. I totally broke down when I was getting ready to do it. How can you prepare and tell you son that he is going to die???? I helped bring this wonderful child into this world. Luckily he was born with no problems and was a very beautiful baby and grew into a very handsome young man. And now I have to prepare him to leave this earth, in such a terrible state?! Physically he looks terrible, but I look past all that and know he is still the same, even though he is asleep and probably totally unaware of what is going on. I make sure they keep him very well sedated as I don't want him to experience anymore pain and just as importantly or more importantly, I DON'T WANT HIM TO BE SCARED AT THE END!!! My only comfort is that his pain will cease, whatever awaits him after death. I sincerely hope that our beliefs are correct and he will be going to a better place. I asked him to somehow let me know that he is ok. I finally decided that I would ask him to come to me in a dream on his birthday to let me know he is fine. As it turns out Leah asked him to do the exact same thing. At times it seems like the end will come soon and I have no idea how we will react. I think it will get harder and harder as time goes on, but hopefully eventually it will start to get easier. Everytime I will go into my bedroom at home, I will have to pass his empty room. I think that it is so unfair, that there are so many things he will never get to do. Then I try to comfort myself with the fact that he did get to do and see so much in his short life. Still, there are so many things he didn't even get to do in the hospital here. He has so many unopened toys that he probably will never get to play with. How unfair. I will never understand why this happened to him and I will never accept it!


Mar. 5, 2001 afternoon
Day + 34

Yossi continues to hang on, but barely. His blood pressure continues to be very low. They are suctioning more and more blood from his lungs. His abdomen is very distended. The only thing that is good is that there seem to be no more new black fungus spots. This morning, Yossi's nurse Jen marked off on a diagram where each spot was and measured it. This way we will know for sure if there are any new spots. It seems like a moot point. Jakub and Dr. Kersey were in. They were very sympathetic when they told us that his coags were down. They explained that if Yossi starts to bleed, they will have no way to stop it. They stayed with us for a while and we spoke about the REAL Yossi. I asked them to give some charity in Yossi's merit, and they were more than happy to do it. There still is a chance for a miracle, but it keeps looking like it will take a bigger one than we thought. Yossi is basically a shell of himself. The extremely high doses of morphine and versed are keeping him very sedated, which is fine with us. So we sit here and wait.
We were looking at some old pictures we took before we came. Here is one of our favorites. This was taken back before we came here. Yossi was so happy because one of his models had arrived, and he was putting it together.

Rabbi Ron came yesterday, and was of great comfort to us. My friend Noa came today, and will stay until tomorrow night. It's so nice to speak to people who remember and love the real YossMan as we do. The beautiful emails that I have gotten so full of love and support have really meant a lot to us. Judy is printing them out for me to put into Yossi's binder of his transplant.
It's so hard. There is truly nothing left to be said, only tears for us who will miss him so much. Please continue to pray and do good deeds for Yosef Chaim ben Breindle Leah.


Mar. 5, 2001 PM
Day + 34

Tonight a friend of Yossi's from Camp Simcha came to visit Yossi. We watched the video they made, and remembered about how happy Yossi was. This was truly one of the happiest times of his life. Thank you Camp Simcha for giving him this! They did so much for the children.
Now I don't know what to think. Yossi is still hanging on. They pulled out 700 CCs of blood from his stomach from 3:00 this afternoon ... that's a ton of blood from anyone. They suction his mouth and breathing tube and they get blood. He hasn't passed anything as far as stools go. And yet his breathing is strong. They haven't had to adjust the vent since Saturday. But his lungs are coarse. You can feel it when he breathes and you rest your hand on his chest. And while I haven't really noticed any new spots, some of the spots are getting bigger. And that is all the bad part.
The good part is that where there is life there is hope. Since he is still with us, I am wondering if this is a sign that we need to INCREASE in our prayers. I was thinking of that hair commercial from a while ago where the person says "If you tell two people and they tell two people and they tell two people... etc" and it got me to thinking that if every person who reads this site calls or emails two people, and then those two people call two more people, and this keeps on, then maybe, just maybe, we can get the whole civilized world to pray for Yossi and do good deeds. So I am asking all of you to please help us and try your hardest to let others know of Yossi's plight. He wanted to beat this thing so much. I know he can't do it alone. Take out your psalms, and say the ones I've listed, plus any other ones you know might help. [Moved to the top of the page.]
Please continue to pray for a miracle for Yosef Chaim ben Briendle Leah.


Mar. 6, 2001 AM
Day + 35

For some reason, Hashem didn't want me to update this site. 3x this morning I updated it, and 3 times the computer crashed and I had no update. So, this is the last time I will try it.
Obviously, Hashem isn't ready to take him, and he isn't ready to go. He is having numerous problems. Last night he had trouble breathing. They turned up his vent. His blood pressure kept dropping, so they put him back on the dopamine. He has some bleeding from his nose, and now his bleeding from his rectum has increased. We have basically accepted the fact that this is going to happen. We still hope and pray for a major miracle, but we are also facing the reality of what is really happening.
Yossi has a friend he made years ago back in Arizona, Shloimy. Shloimy told me that he noticed I had put the wrong numbers on the tehillim list for the letter YUD. Please look at the corrected version, and continue to pray.
A lot of people are angry, or saying that there is no G-d. This is so far from the truth, in my humble opinion. I think that G-d is telling us "NO". As much as I wish it wasn't the case, this is what it appears to be. I hope that the faith that Yossi has will continue to inspire everyone to continue to believe.
Please pray for Yosef Chaim ben Breindle Leah


Mar. 6, 2001 afternoon
Day + 35

All I can think is that there is maybe one more prayer or one more good deed that needs to be done to turn the tide here. I have never in my life wanted Moshiach (the Messiah) as badly as I do now. Michoel and I are taking turns laying in bed with Yossi. Michoel has been timing his breathing to Yossi's on the vent. His breathing is getting harder, and they turned up the vent again. It is so hard here. We need a miracle so badly. Please give charity in his name (tzedakah tatzil mavees [charity saves one from death]), and pray for Yosef Chaim ben Breindle Leah.


Mar. 6, 2001 PM
Day + 35

Tonight I really didn't feel like doing an update, and after reading my emails, I must tell you .... I am amazed at all of you. I feel that between your prayers and good deeds and pleading with G-d and Yossi's deep desire to live, we have hope. I don't know. I am having such a roller coaster ride here. Yossi is fighting for his life, and he isn't giving up. We are also not giving up. We look at how sick he is, and try to find some tiny sign that he might be getting better. Today I was really down in the morning, feeling that we are getting closer and closer, and I truly don't want to lose him. But THANK G-D his blood pressure has been fairly good today. His heartrate at times was a lot lower than I would have liked to have seen it, but it's still beating. I think that the doctors are surprised to see that we are still here. Oh well, too bad on them, right? I thought that there were no more new lesions, but I found one or two more new ones tonight. They are very tiny. Denise, his nurse tonight says that he lungs sound slightly better tonight than last night and his blood pressure is staying up better. So I am terrified to get a little hopeful.
Rabbi Bart arrived this morning and we were grateful to have him here with us today. Between him and Noa, it feels almost like we are back home, and they are just here at the hospital visiting us. Both of them have been a tremendous source of strength for us. We are extremely happy they made the trip.
We also had a wonderful visit from another rabbi , Rabbi Feller. He was so inspiration to us, that I actually felt like Yossi truly can make it. He said "tracht gut un zein gut" [think good and it will be good], the same thing that R' Yossel Kranz has been telling me. He told us many encouraging stories, and I feel that between Yossi's intense desire to live, and the prayers and good deeds being done, he might truly get this miracle.
I am still begging and pleading with everyone to do as much as you can. I know you are doing so much, and G-d is truly listening. Dr. Kersey didn't think he would be alive Monday morning. Every morning when I wake up, I feel scared (is this the day?) and thankful (he's still alive). Michoel thinks that I am starting to lose it from being cooped up in here. But I feel so strongly. Yossi wants to live. He is fighting so hard. It's up to us to help him. Noa said to me today that I didn't know what I was doing (ie- accomplishing) on the internet. I told Noa that I did. I am desparate. I am trying to save my son's life the only way I know how. I can't think of any else to do. I so much want to celebrate his Bar Mitzvah with him here in this world. I know that G-d is standing right over his head. If I know Yossi, he is bargining and smiling and trying his hardest to convince him to let him stay here. I hear of all the kids who are praying and the grown-ups who haven't prayed in years who are praying for a child. Most of these people don't even know him, but they feel that they know him from our site. Yossi has accomplished a tremendous thing through his struggle ... he has united people together ... it doesn't matter who we are, what religion we are, anything ... You have united together, and I know that G-d is smiling. I hope that we can get enough prayers, charity and good deeds to tip the scale in our favor, and grant Yosef Chaim ben Breindle Leah a complete and speedy recovery. Bless you all for your effort!!!! Thank you! Keep praying your hardest. We got this far, where there is LIFE, there is HOPE. If anyone can do this, it's Yossi. GO YOSS MAN! You can do it! I love you!


Mar. 7, 2001 afternoon
Day + 36

Michoel is really ready to have me committed. I went around this morning handing out copies of the Tehillim (Psalms). I went to most of the rooms and gave them to the nurses. When it got close to 1:00, Marlene, the secretary, Kendall (RN), Teresa (RN), the resident Deepika, the fellow Jakub, Pat (the dialysis nurse), Laura (the chaplain), Noa, Rabbi Bart, my uncle Harvey, Marvin and Ilene, as well as Michoel and myself were all there to say Tehillim for the YossMan. At 1:00 we all started to say it. It was a great and awesome moment to think that all around the world people were united together with us. There is a tremendous power in prayer. And in unity. Dr. Kersey came in later. He stood at Yossi's bedside and said the prayer with deep devotion. We were all very happy.
Teresa said to me as soon as I woke up, "What is going on with Yossi today?" (Dabney, is my grammar correct here?) I wanted to know what was wrong. She told me that his coags were a little better than they have been. His potassium was up, and his blood gasses were also a little better. I will take any little tiny improvement. I found out last night that Yossi got his last dose of ATG. I asked the resident Deepika if we could get MMF. We got the OK. (All these drugs are used to fight the horrible GvH that Yoss has.) Yossi hasn't pooped in a week, which is why his belly is so distended. Teresa said that it is good that his gut is resting and healing. We are hoping the blood in his gut will be reabsorbed. Also, I don't know what to think about his fungus. I found a few new lesions this morning. Also, his blood has tested postitive for gram + for the past 3 days. He has been getting vancomycin for the last few weeks.
So even though we see a few teeny-tiny improvements, Yossi still has an very long way to go. We are approaching Purim, the day of turn-abouts. Keep praying even harder for Yosef Chaim ben Breindle Leah.


Mar. 7, 2001 PM
Day + 36

First, I would like to share a letter I recieved from a friend back home, Tziporah S. (If you want me to pull it off, I will.) Tziporah says exactly what I feel. Yossi has such a stong belief in Hashem. I am not saying that I feel down or think the worst is about to happen, G-d forbid. I am just saying if G-d forbid despite all our prayers, good deeds, charity, etc, Hashem (G-d) still decides to take Yossi (G-d Forbid), then we all need to accept His decision. I have come to peace with this. Michoel is really worried about me, fearing that I am going to have a breakdown. But I feel that whatever happens now, it's in His hands. I truly trust that Hashem is doing what is right and good.
"Dear Leah and Michoel;
While I pray everyday for a complete recovery for Yossi Chaim, I also pray that Hashem will bring peace to you and your family. It saddens me to think that anyone would turn away from Hashem if (G-d forbid) Yossi Chaim should pass. Yossi has made so many miracles happen. He has brought a tremendous amount of healing to this world. I hope you find comfort in the fact that everything happens for a reason. I have yet to see anything negative come out of even the worst situations."
With that said, today was the best day we have had since last Friday. Last week all of our hope was sucked out of us. We sat here and cried for 4 days. Last night Rabbi Feller came in, and filled me with that hope. All morning I was very excited for the tehillim. Yes, I did drive everyone on this floor nuts about it. But the unity of the prayer was so important. We are showing G-d that it's not just one family, or even one community that wants him to get well. It is many people of many faiths who are joining together to beg for his life. I know that Yossi would actually be a little embarassed by all the fuss that is being done for him. He is very humble and modest. Yossi himself is the leader in this group. He was able to do his full run of dialysis. The dialysis nurse Pat was very encouraging to us. It means so much when we hear positive feedback from the nurses.
The eye doctor, Dr. Stouyer came to check Yossi's eye. He is truly a wonderful man. He told us how happy he was to see us here. He checked Yossi out and said that the left eye had gotten a little worse. But the right eye was fine. No sign of the fungus, Thank G-d!!!! He thinks that one of the meds must be working if the fungus hasn't spread to that eye, again, Thank G-d. (I can't stop thanking him for each and every small little piece of something going right here.) He also told us that he doesn't feel that what happened to Yossi's eye this weekend was a sign of brain damage. The only way to know for sure is to do a CT scan. We don't want to put Yossi through this, as it would cause him too much pain.
Yossi blood gasses were way off this afternoon and they upped his vent from 14 to 20. I confess. I truly don't know what this means, except that it helps him to breathe better. Dr. Orchard had mentioned that one sign of his weakening state would be to have to offer more life support through the tube. So I am concerned about it being turned up so high. Mary, the RT nurse explained to me that his lungs are getting stiffer and stiffer. It is getting harder and harder for him to breathe. Every time there is a change in his heartrate, or in his blood pressure, I get very nervous. I am watching over him like a hawk, checking for signs of impending doom, G-d forbid. The nurse we had tonight was a very sweet and caring nurse. Gen and I spoke about how I am handling things and her recommendations was to let G-d worry about it. I know that I am trying to control the outcome of this. I don't want to lose him. And yet I know Hashem is the one who will ultimately decide what will happen. If Chas V'shalom (G-d forbid) the decision is not what I had hoped and prayed for, I don't want to be thinking, "If only I had done this or done that." I feel that I have been doing everything I can do help him, along with the prayers and everything. I KNOW ONLY G-D CAN CURE THIS CHILD. I don't think that I am losing it. I want him to get better, but I know that it is a very good possibility that it won't. I see the fungus eatting away at his ear and his nose. I know that this is a horrible fungus that very few people have survived. But I also know that Yossi has faced this before, although not this serious. We have been told so many times that Yossi's odds were very bleak. I remembered tonight once when there was a mix up, and we were told that not only had the leukemia increased, but it was in his CNS as well (G-d forbid that ever happen)! I remember sitting with Michoel, and sobbing because we knew that once it gets into the CNS, it's basically over. And then we found out it was a mistake! Salvation in a blink of an eye (or phone call, in this case.) I KNOW that if Yossi gets this miracle I want, it won't happen overnight. It's going to take a long time. He is so ravaged by the infection. I haven't even touched upon the GvHD in a while. We know it's there. Hashem can do anything. And as I have said before, while there is life, there is hope. I will continue to hope and pray. Tomorrow is Ta'anis Esther (the fast of Esther). It's the fast to commerate the one the Jews did years ago when we faced annihilation. A perfect and fitting day for the YossMan. Then we go into the happiest holiday of all, Purim. The day that was destained to be our destruction. Through the hidden miracles Hashem performed, not only were we saved, our enemies were the ones who were annihilated. It is a day of rejoicing like you wouldn't believe. I hope that Yossi will continue to give us signs to celebrate and rejoice with him.
Please continue to pray for Yosef Chaim ben Breindle Leah. It's a perfect time to give extra charity in his honor.
On a final note, I would love to be able to share some of the incredible stories I am hearing about what is going on around the world. If anyone would object, or doesn't want their letter posted, please let me know. As time allows, I would love to be able to get them up here to share.
As I noted above, the problem with Yossi's lungs probably isn't going to correct itself. We just need to accept whatever is decreed.


Mar. 8, 2001 AM
Day + 37

The doctors came in this morning to check Yossi. As they walked in, I tried to high-tail it out of here. I already knew what they were going to say and I don't want to hear it. Michael told me that it was wrong, and I needed to be here, so I stayed. After the exam, they told us that he is continuing to deteriorate. I knew that, as he is eatting up red cells as fast as they can give them to him. His lungs are getting stiffer. His face has a grey color to it. I told the doctors that every minute that Yossi is alive, he is accumulating more merits he has earned through the prayers, good deeds, and charity that has been given in his merit. Deepika, the resident, put some money into the tzedakah pushka. After the doctors left, she stayed behind. She began to cry, and I told her that it was OK, he is going to a better place. She hugged me and told me that she hopes I will stay strong for the other kids.
And so here we are, on Eruv Purim, the happiest day of the year preparing to return to Hashem the pure and holy neshama (soul) that he gave us almost 13 years ago. I cry not for Yossi, but for me. I will miss him. My arms will ache for his hugs and kisses. I know that he will be doing exactly what he wants to do. I know he will be happy. I know he will want us all to not worry about him. Yossi, with his pure and holy soul will sit at the keesay hakavod (the Throne of Glory), right at Hashem's feet. He will learn Torah all day with Him. He will sit with the other Tzadikim, and eat from the livyason (food for the righteous in the world to come).
With all my heart and soul, I pray that Moshiach comes and saves me from this sorrow. With all the prayers, good deeds, and charity given, we have moved closer and closer. Yossi has an incredible zchus (merit) to have brought about all this. He has touched so many lives of so many people.
Please continue to add to Yossi's merits, and pray for Yosef Chaim ben Breindle Leah, give charity, and perform acts of kindness.


Mar. 9, 2001 AM
Day + 38

It is amazing what one Xanax will do for you! Either that or it's the fact taht Purim has finally arrived. All day we have been watching the heart monitor. At one point his nurse Suzanne asked if we wanted the machine turned off. I immediately said NO, as I enjoy watching his heart beat. (It's similar to listening to my baby breathe in the monitor.) It lets me know he is still here. So anyway, all day we have been very down, and knowing that at any moment the FINAL moment will come. All the while, we are still hoping and praying for a miracle. Michoel sat and said the whole tehillim today. I said number 22 several times, as it is very connected to Purim. Michoel says that I am turning into a rabbi, as I am telling everyone about the Purim, teaching them about the story. It's hard to explain why we are so hopeful when they are not. They don't understand the power of Purim.
Around 5ish, Suzanne said that his blood pressure was getting low, and did we want to forget about the dopamine, and just let him go. I absolutely did not, so we gave it to him. I really wanted him to hang around to hear megillah (the story of Purim) one last time. His blood pressure remained ok, and at 9-something, the bachrim (older boys) arrived to read the megillah to us. I stayed in bed with Yossi during the reading, as I had the whole day. And I'll say it again, I don't know if it's the xanax, or it's Purim, but I am feeling happy. I know that all the signs are pointing the other way, chas V'shalom. But I know in my heart that if Hashem isn't ready to take him, it isn't going to happen. Yossi's heart is strong, but it is getting a little weaker.
In case you are wondering why it took so long to get this update up, it's because of a wonderful thing that happened here tonight. Rabbi Ginberg brought 3 men to sing to Yossi. 2 of them were dressed up as women. It was great. They sang and sang and sang. Never mind that it was one o'clock in the morning. What makes Purim special is the simcha, happiness. I explained to everyone that whenever there was a simcha (happy occasion), you would always find Yossi in the middle of the crowd, singing and dancing. I know his neshama was singing and dancing tonight. (I hope the people in the rooms next to us didn't mind too much.)
I don't know what to say. If you go by what the doctors say, it's hopeless. But we all know that where there is life there is hope. So we are not giving up on him yet. We continue to give him medicine and hope and pray for the miracle.
In honor of Purim, it is customary to give extra charity. Please think of Yosef Chaim ben Breindle Leah as you do it. Keep praying, and add tehillim 22 today. Yossi's story isn't over yet, as of 2:00am. Chag Purim Samach! Happy Purim!
(Nothing has physically changed for Yossi. The nurses are seeing impending signs of death, CHAS V'SHALOM (G-D FORBID). I am seeing spiritual signs of hope.)
ps-- I do read every piece of mail that comes through. I just don't have the time or energy to relpy. One day I might.


Mar. 9, 2001 PM-ish
Day + 38

Ok, so it's not the evening, but it's the afternoon, which is still PM. Despite the fact that Yossi is "knocking on death's door", I still managed to have a fairly decent Purim. This morning Rabbi Goldberger came with the president of the shul, Bob Kusnetz and Rami. There were all dressed up in costumes. Rabbi Goldberger did such a fine job of reading the megillah for us. He sang parts of it in different tunes, and really put a lot of feeling into it. Part of reading the story of Purim is shaking a grager (noisemaker) to blot out Haman's name. As I was shaking the grager, I was think of blotting out the fungus infection and the GvH. I hope it worked!
Yossi did hear megillah twice. He also had the Purim seudah (meal). Chanie, my friend in New York sent him a piece of the matza that was left over from last Passover. It has a special healing power. My other friend Tzipporah sent us some wine that had been blessed by the Lubavitcher Rebbe. We ground up a small piece of the matza, added some wine, and sent it down his NG tube. Bryan did fine at first. But he didn't realize that matza expands, and was worried that the tube would clot. Thank G-d it didn't. (He would have had to put a new NG tube down Yossi's nose.)
All morning Yossi was a having a hard time with his blood pressure. It has been on the low side. When they came for dialysis, his pressure was too low to be hooked up. They had to up his dopamine, and finally he was high enough for them to begin. All through the run he had a hard time keeping it up. In the end, instead of taking off 3.2 kilos of fluid, they only got .8 of a kilo. But he did make it through the run without them having to take him off.
Dr Stauer, the eye doctor came back. He was very pleased to see no sign of infection in the right eye (still). He said that the left eye was a "shave better", but he was concerned about the outer part of the eye. He is coming back on Monday, and if it's still a problem, he is going to have to put a stich in it to hold it close. (The eyeball is so full of fluid that the eyelid can't close.) So at least we got one bit of good news.
There is nothing else new going on here. Michoel is getting cabin fever now. Neither one of us has stepped foot out of the hospital since last Friday. I don't mind so much. I have gone to the 5th floor to do laundry once, and another time to steal bowls from their snack room. (Ours has been out of bowls for a week. *wink*)
Hope all of you had a very joyous Purim. Continue to pray for Yosef Chaim ben Breindle Leah. (Jewish women and girls, it's a special time to ask Hashem for help when you light the Shabbos candles. If you don't normally light candles, this would be a perfect mitzvah to do for Yossi, and then to pray for him.) We will be able to update the site sometime after 7 PM Saturday night. Have a good weekend!
I have to share one really incredibly letter I got from Nitza, a friend of mine in New York who is from Israel.
Dear Leah and Michoel
As I told you before I turned to my father's rabbi in israel who teaches them Kabala every night. He has good news for you. He opened a book for Ypssef chaim ben Braindle Leah and he said like this: The situation is very hard BUT he will come out of it Be'ezrat Hashem he wanted you to make a promise to do Yossi's WEDDING in ISRAEL!!! it's atime of great lights revelations and all will be well Be'ezrat Hashem.
Please do not despare!
He also wrote a Kamiaa (amulet I think is the word for it) and my father is going to send it on sunday from Israel. With many wishes for a HAPPY PURIM for you all.
love, nitza


LIST OF MEDICAL TERMS AND ABBREVIATIONS

ANC Absolute Nuetrophil Count (The number that tells the doctors how susceptible someone is to infection. Generally over a 1000 is the best.)
BMA or BMB = Bone Marrow Aspirate or Biopsy (a small amount of bone marrow or a piece of bone taken from out of the back of the hip. It is used to check the number of blasts in the marrow.)
CNSCentral Nervous System (Doctors check the spinal fluid to make sure there are no leukemia cells in there ... the prognosis is extremly poor in those cases)
CSA =cyclosporine (the drug used to hold GvHD in check)
CT = CT scan, pronounced cat scan
GvHD =Graft vs Host Disease (The new marrow attacks the host body)
GCSF=Growth Colony Stimulate Factor (the medicine used to raise his white cell count)
PT = Physical Therapy
RMH = Ronald McDonald House
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