Bone Marrow Transplant: Yossi's Story
After looking into several transplant sites, we have decided to go to Minnesota, otherwise known as Fairview. I had emailed doctors in both Seattle and Minnesota. I found the doctors from Minnesota to be very warm and fuzzy. I just have a very good feeling about them. I also had the chance to speak with both a nurse and a doctor from the hospital. I spoke with a woman at the Ronald McDonald House, and she was very sweet. She actually called a former family, and had the mother call me. They are an orthodox family from NY. She was able to give me a lot of information.
Yossi is feeling very good, and pretty hopeful about the whole thing. He feels that this is just another obstacle for him.
Please pray for Yosef Chaim ben Briendle Leah.
Yossi is not even here right now, he is down at Disney World with Camp Simcha. He is having a great time. When I told him that we are going next week, he said "YYYYYEEEEEEEEESSSSS!!!!!" Need I say more, the child is very happy.
Even though this is so exciting, and we are hopefully on the way to Yossi's cure, I am still very nervous now. It's real. And even though my mom doesn't want me to express my scary thoughts, they are there all the time. I can't help thinking all these scary thoughts. Is this going to be the last Shabbos we all spend TOGETHER- Will the other kids see Yossi again- My deepest and darkest fear is that I will be taking my son with me, and G-d forbid bring him home in a box. That is the scariest thought of all. I imagine what it would be like without him, G-d forbid. I try to sleep at night, but I wake up a lot of times, and can't fall back asleep. These are the stupid little thoughts that invade my head. I try to push them away, but they don't go. I want a magic wand to make Yossi all better. I really wish he didn't have to go through this. He truly doesn't remember too much of his first transplant. I hope that he doesn't get discouraged when it's so tough. I feel positive about this, but I am scared. I am going forward with very open eyes. The hospital is wonderful, but the transplant itself will be more of a challenge this time. Graft versus host disease (GVHD) scares the daylights out of me. But then again, so does Leukemia.
Lisa has started a tehillim going for Yossi. She only needs 46 more perukim said.
Pray for Yosef Chaim ben Breindle Leah. He needs all the prayers he can get now.
This was the longest day by far. We arrived at the hospital without Yossi and Grandpa. First we met with Dr. Ramsay. It gave us a chance to look at the schedule and ask questions. It was a good meeting. Then we met with our social worker, Stacey. We were able to express some of our concerns, and area’s where we will need help. After Stacey we met with the head dietitian to explain about kosher as well as Yossi’s particular likes and dislikes. By then it was time for Yossi and Gramps to arrive to go down and meet the people who would be putting in Yossi’s new line. (All BMT patients need a Hickman. It’s a line that hangs out of the chest and has two places to hook Ivs). We took a tour of the floor where Yossi will be staying, and finally left the hospital. We had finished up all the tests, and now we are waiting for final approval from our insurance. Every test has come back fine, so this won’t be a problem.
Day -1. Another few yuchy days. I stayed with Yossi after Shabbos. Sunday morning he wasn't feeling well. His eye hurt, his Hickman hurt, and his stomach hurt. In the early afternoon he threw up (a lot), and then he felt a lot better. I was very surprised, as he hadn't eaten since Saturday night. Today was a big downer. Yossi was feeling down all day. He cried, and said he wants to go home. He had a boy his age who came to visit, and he wouldn't talk to the boy. He just wasn't up for company. Yossi didn't eat anything all day. He drank a little bit of water. He is bored with his room, and like I said, he wants to go home.
Tomorrow is the big day. Please fast and pray for Yosef Chaim ben Breindle Leah.
Day 0. This was it, the big day. Yossi spent most of the day sleeping. Grandpa (the donor) went down to surgery at 9:30, but they didn't take him into the OR until after 11:30. The nurse from Grandpa's floor was kind enough to bring him down so he could be with us. Finally, a little after 8 PM, the nurse brought it in. In her hands the nurse held life! Two nurses brought Yossi a Snoopy dog with a balloon tied around it. We noticed that the bag of marrow is larger than the one that was used last time. This is because Yossi is bigger and older than last time. Every little while the nurses took his blood pressure and his temperature. This infusion took longer than his first transplant. We started to get a little bored towards the end. We thought that Yossi was asleep, but he managed to crack a smile. As the marrow finished going in, Yossi fell back asleep. The infusion finished a little before 9 PM our time. Papa took Grandpa back to his room. I took the baby back to our apartment to start to unpack.
Now only 100 days until we can go home, barring no complications.
Day+2. It is so weird to begin the count all over again. When Yossi had relapsed, we were just 15 shy of 1000 days post-transplant. It feels like a real slap in the face to start all over again!
First of all, Yossi has been having a lot of bad days. For the past few days, he was sleeping, throwing up, or moaning his stomach hurt. Michoel went to sleep by Yossi again. Yossi threw up again tonight, with more blood in it. The nurse said that it wasn't so much. I personally think that it might be because he has a mouth sore in his throat, which is getting irritated by the barf. This is just my humble, medical opinion. We won't have news as to when the transplant worked for a while.
Day+7. This has been a very hard day for both Yossi and all of us. The resident woke me at 6:00 am to tell me that he was having kidney problems. His creatinine was up. His base line was .6 - .8. Today it had gone all the way up to 2.3. So they wanted to stop one dose of a lot of his medicines. They gave him a bunch of stuff to try and help raise his blood pressure, which was terribly low. They had a lady come from ultrasound to check his kidneys, and Thank G-d, they are functioning fine for now. His liver is also doing well. So they suspect that the meds are causing the kidney problems.
Yossi is very weak and uncomfortable. The rash hurts and itches. It's very hard for him to walk to the bathroom. He is tired from the Ativan, and it is causing him to have all these hallucinations. For a while it was freaking me out, but now I just try to calm him down when he wakes up. He got two units of packed red cells today, and one unit of plasma. What they are suspecting is that his kidneys are not ridding his body of waste. Therefore his blood pressure is dropping. Since his pressure is dropping, his veins are dilated, and there isn't enough fluid flowing through his veins, which is causing his blood pressure to drop. Which is also causing his kidneys not to work well. It's all a vicious cycle. They tried to give him fluids to see if that would help his blood pressure, but it didn't. From yesterday to today Yossi gained slightly over a pound. He is very upset about his weight gain, even though we tell him this isn't permanent.
When I asked the doctor about Yossi's condition and bringing the siblings out, she recommended it. We might have the family come out tomorrow to be with us.
This is scarier than when we found out he relapsed and when his chemo wasn't working. This is looking death in the face, and it's freaking me out. We all love him so much, and we are all so scared of losing him, G-d forbid. Now is the time to call in all the big guns, and pray super duper hard for Yosef Chaim ben Breindle Leah.
Feb. 7 PM
Day +8.Yossi gained another 1.8 kilos! His legs are huge, as his is face, fingers, toes, etc. He has popped several blood vessels in his eyes, giving them a red appearance. His joints are really causing him a lot of pain. He is frightened out of his wits about the things the doctors talk about.
Feb. 8 PM
Day +9. When I awoke this morning, Yossi was sitting up in his bed. From my bed, even without my glasses on, I could see how swollen he was. The rash has spread up to the top of his head. He looked like a gigantic swollen tomato, about ready to burst open. When the nurse asked him how he was, he said terrible. He was hurting all over. Even his skin hurts. His arms are so swollen he can't bend them. They put him on a machine with an oxygen mask to help him breathe a little better. Around 2 PM this afternoon they will take him down to surgery. They are going to take out his Hickman, and put in a catheter. As soon as that is in place, he will be able to start dialysis. This is going to help get rid of the fluids that have accumulated in his body. There has to be at least 12 lbs. of fluid in him right now. For most of this morning, he has been sleeping. When he comes back from the surgery, we will have moved him to a new and bigger room. It's much bigger and nicer than this dreary little room. Yossi will also be placed on a ventilator to help him breath.
Today emotionally has been one of the hardest for me. I felt very scared and alone. I am furious with the way Yossi looks and feels. I just want him to get better already, and stop suffering. Later. Right before Yossi's surgery, he perked up. They had to take off the oxygen mask,so he was able to talk. We showed him his tefillin that arrived this morning. His face lit upwhen he saw them. He also called his friends back home to talk to them. (There was extended day today, so he was able to talk to a lot of his friends.)
The renal people were in, and started Yossi on the dialysis. They did a super job, and were able to get rid of 3800 CCs of fluid, which is almost two liters. Right away I noticed that the swelling in his hands have gone down. It will take a few more days for the rest of the swelling to go down. For the next couple of days while Yossi is in critical condition, he will have one nurse that is in the room at all times. This is one of the things I like about Fairview. They have ICU nursing staff, and they are set up to be an ICU on the floor. My in-laws arrived this evening with the kids. They went to hospital with Michoel and Goldie. Michoel told me that Goldie was crying when she left. It must be so scary for her, as it is for me to see him like this. I did take a picture to show him when he gets better.
Keep praying for my little guy (even if he is almost as big as me). Yosef Chaim ben Breindle Leah.
Day +11. More good news on the YossMan. First of all, his white count is up to 800 (.8). Tonight in the hospital, we decided to start a pool on what tomorrow's WBC (white blood count) will be! We need to do something to try and lighten the spirit. I don't remember all the numbers we guessed, but we wrote it on the board in his room, and we will find out who won tomorrow.
Yossi is doing well on the vent. They have been lowering it a little each day, so he is starting to breathe more on his own. His white count is rising, meaning the marrow is starting to engraft. But this is also the time that they watch very carefully for signs of GVHD. There are four stages of GVHD. The first is mild all the way to the fourth which is usually fatal. Let’s hope and pray we never get past the first stage. A little GVH is always good, as it helps with the graft vs. Leukemia effect. Leaving Yossi everyday is the hardest part. Before, he would say "Good Bye", and he would reassure me he was OK. Now he can't. I wish there was someway he could just look at me for a minute and smile and let me know that he is still fighting.
Day +15. Yossi had a terrible red rash from the top of his head down to his toes. It reminded me of very bad sunburn. Now his skin is peeling everywhere, and in some places he is getting big blisters. Tonight when the nurse came to help us turn him to clean him, she was shocked by what she saw. She cried out, "Poor baby, oh that must really hurt! I am so sorry!" His skin hurts him all over!
Obviously, all of our family loves Yossi more than words can say. (Don't all parents love their kids that much-) What I am trying to understand is what is it about him that makes all you other people love him so much. He has always been this way, so good, so kind. People have always loved him, and he has always touched many hearts. When Yossi was little, like two or three, we used to go to our synagogue. When we arrived, all the children would come running up to him, calling, "Yossi's here, Yossi's here." Even the older children would be happy to see him. He has such a good nature, he loves everyone. I have said this before, but Yossi doesn't complain and say that this whole cancer business isn't fair. He accepts what G-d has given him. He gets down sometimes when certain things happen, but he doesn’t complain about his fate. Even up to last Thursday when he was in such pain, he still wanted to try and do things for himself. He told me that he wasn't going to let cancer get the best of him, and he still wanted to do things for himself.
Day +18.This past Shabbos, I tried to spend a lot of "quality time" with the other kids. (I truly hate that word, but there is no other way to describe it.) I think that the other kids might be jealous that I am spending so much time with Yossi, and he can't even talk to me. That doesn't mean that I don't get mad, or punish them when they misbehave. But it was sort of a normal time for us.
Tonight I did a load of laundry. I accidentally shrunk my favorite sweater. Now in the whole scheme of things, this is totally dumb and meaningless, but it made me feel so down. What I am trying to tell you all, is enjoy your life. Don't sweat the little stuff, it really doesn't matter. What matters the most in life is your family and your friends. Live life to the fullest, hug your kids and tell them how much you love them. You truly don't know what tomorrow is going to bring. Also, there is so much good in the world. Look for the good in everything, because it's there.
This Friday is the new Jewish month of Adar. Adar is a month of happiness. It was in the month that the Jews were able to overcome an enemy that set out to annihilate them. I feel that as we approach this happy month, Yossi will be able to fight his enemy. And truly the month will be one of celebrating and rejoicing for us!
Day + 21.Last night when we all went home to eat dinner, some doctors from ICU came in and cut back on Yossi's propofol. (They want to try and cut it back to wean him off the vent.) The nurse told me about it when I got back. I ran and got the attending physician to come in and see how uncomfortable he was. He agreed with me, and UPPED his propofol and his morphine. From his heart rate I could tell that he was still not a happy camper, but I have no way of knowing what is bothering him. I was happy that I had used my ferocious Mommy boots to help Yossi.
This morning when the resident came in, I mentioned how uncomfortable he was. She checked his x-ray, and the tube had moved a little. So they called respiratory to come fix his tube. (Next time he is uncomfortable, I am going to ask them to do an x-ray.) Meanwhile, Tricia, his super sweet and caring nurse had bathed him. While she was cleaning him up, his horrible blister finally popped. Tricia also found that there was blood in his stool While she was out, Yossi's blood pressure took a nose dive. Amy, the resident was in here at the time. They watched it, retook it, did it manually, and finally they called a doctor in here. Soon, the room was filled with doctors and nurses. At one point, Michoel counted 10 medical personnel in here. They were giving Yossi albumin to try and get more fluid in him. They gave him dopamine also. At one point his pressure had dropped to 57/25! I was really scared and praying real hard. I called RTA (our school) in Richmond to get them to pray for him as well. I was so distraught that I couldn't speak. My close friend Judy happened to take the call, and she was horrified, thinking the worst had happened, G-d Forbid!!!! I finally got the words out to her to gather the kids to say tehillim (psalms). They had to access Yossi's port quickly, so I held his hand. The ICU doctor was so kind. Dr. Steiner put her arm around me and held me. She told me he was going to be OK. I cried that this shouldn't happen to kids, and both she and Dr. Orchard (the BMT doctor) agreed with me. The group was able to get Yossi stable. He had received so much fluid that his body started to puff out. His stomach was distended and his left hand looked like a rubber glove that someone had blown up. His face also ballooned out. His eyes are swollen shut. The problem is that his body needed fluid to get his blood pressure up. But his veins are leaking fluid out. The doctors suspect that there is an infection somewhere. They can't prove it as all the cultures have come back negative. For right now they have him stabilized. They are watching his blood pressure very carefully. They are also starting him on a bunch of antibiotics and upping his CSA just in case there is GVH.
Emotionally it was a very hard morning for us. I really thought that G-d Forbid I was going to lose him as I watched the pressure continue to drop. Thank G-d for the wonderful doctors and for giving the knowledge how to fix all these problems. He's not out of the woods. I guess that he is in critical but stable condition.
Feb. 22 AM
Day + 23. I think that the stress and stain of this whole situation is starting to get to us. For the last 3 nights, I have been sleeping in the hospital. Since Yossi is ICU, there is always a nurse in here, and between all the people coming in and out, it doesn't quiet down until close to 2am. So that is usually when I go to sleep. Then the fun starts again somewhere between 7:30 and 8:00 am. The staff here is so kind and considerate. When we are sleeping, they all try their hardest to whisper and not wake us up. I've even heard when a small group of doctors and residents come in they will try their hardest to be quiet.
Anyway, since I was so sleep deprived from the last 3 days, I made sure I set the alarm when I went to sleep last night. I had to get the kids up at 6:30 so that they would be ready to leave for school. At 7:20 the phone rings, it's the rabbi to pick up the kids. Long story short, I ended up driving them to school. I got lost coming home, and had a mini-meltdown. I just want to be home in my house with all my kids, with all of this behind us. I miss Richmond so much, and all my friends and my normal life. I am really getting homesick.
Yossi is a little more alert. Last night Victor (BMT Fellow) came in. He was trying to get Yossi to respond. I went over to him, and asked if he could hear me. He nodded his head yes. Then Victor wanted me to ask if his tummy hurt, and Yoss shook his head yes. And this morning when PT was moving his arm, she asked him if he wanted to be an arm wrestling champ, he shook his head no. He seems to be resting a little more peacefully. His heart rate is also a little lower, which tells me that he is a little calmer.
Please continue to pray for Yosef Chaim ben Breindle Leah.
Day + 25. Some good news ... Yossi does have 100% engraftment. (We had found out last time that he only had 97% engraftment.) The result of Yossi's scope yesterday is he has Stage IV GVHD. This is extremely serious as the scale works from grade I to grade IV.
This morning on my daily bodily exam of him I found a black spot on him. (I check out each part of his body to make sure there wasn’t anything new on him.) This spot is right under his headgear that holds his breathing tube in place. The spot is black and the size of a dime. It's hard. Dr. Orchard suspects that it might be the headgear rubbing on his face. He said that his skin is very friable. But they are going to carefully watch this. The only thing that makes me very nervous is that SOMEONE changed his headgear on Thursday or Friday, and no one noticed it. We can't find a note of this anywhere in his chart. It might be that RT changed it, but they didn't note it. Well, just as long as they are watching it! They were going to call the derm doc, but I don't want them to take a biopsy of his face. (It would leave a scar.)
Day + 26.Yossi has good news and not so great news. First, the not so good. His white count dropped from 4. yesterday to 2.6 today. As long as his ANC remains above 1000, they will leave him. Since he is so sick, if he gets close to a 1000, then they will give him more GCSF. His skin has a lot of new blisters. But it is looking better on his hands.
Now for the good news. Yossi is a lot more responsive today. They are not sure if it's because of the plasmapheresis they are doing, or if it's because they have lowered his morphine. Whatever the cause, Yossi held Papa's hand for an hour and half this morning. He is able to open his eyes when told to, and squeeze a hand most of the time. One of the biggest tests they did was to turn the vent way down (or something like that), and he was breathing on his own for an hour. They will do this for one hour every 4 hours and see how he does. It looks like they are shooting to try and extubate him in 2 days. He keeps reaching for his chest, and we are not sure if the scab near his port is bothering him, or if the tube down his throat hurts, or what.
We did get a lot of snow last night. We are going to take the other kids sledding today.
Keep praying for Yosef Chaim ben Breindle Leah.
Day + 27. I noticed that the spot on Yossi's cheek was a lot larger. I showed it to the ICU doctor, Dr. Hadad. (The ICU docs switch once a week.) He was a little concerned about it. He said that they might take the tube out tomorrow or the next day. Yossi has been doing a good job of being alert and helping to tell us what is wrong or what he wants. After Dr. Hadad left, Dr. Orchard came in. He told me that the culture of his cheek had grown a fungus (which is what I was saying the whole time). They are starting him on Abelcet, an anti-fungal. I also got to draw a line around his cheek to mark off where the redness extends so that the doctor could watch it.
Yossi is working very hard at trying to get better. He wanted to sit up a lot today. When the nurses ask him which side he wants to lay on, he raises his hand. For two days now he has been trying to tell us something about his shoulder. We are not sure what he wants, but he wiggles the right one. Even when Dr. Orchard was in here and almost done, he started wiggling it. I told Dr. Orchard that it was bothering him, and we didn't know exactly what was wrong. We had PT in here, and they worked on rotation. We have also been working on exercising his arm. Yossi did get scared about the thing on his face. At one point, some tears were rolling out of his eyes. Patty (his nurse today) told me that it wasn't a tear, but after a few fell, she admitted that I was right. I thought something was hurting him. Every question I asked was answered in the negative. Then I asked him if he was scared, and he shook his head yes. So I am trying to get him to focus on the positive, and I keep telling him he will get better.
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 new doctors. 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, one told me to wait until after they finished the exam of Yossi. The final kicker to their conversation was the comment about "... how very sick he is". Remember, this is their first visit with Yossi. I replied, "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.
It’s very black here.
Please continue to pray for Yosef Chaim ben Breindle Leah. Give charity, do acts of kindness.
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.
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 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, afternoon
Day + 33. 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, 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. 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 accumulating 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 coarse 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 nurse’s 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.
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 it. 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.
Mar. 6, AM
Day + 35.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.
Mar. 6, 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. 7, 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-" 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 positive 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 a 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. 8, 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. Michoel 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 eating 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, AM
Day + 38.It is amazing what one Xanax will do for you! Either that or it's the fact that 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.
Mar. 10, PM
*At 11:12 tonight (March 10, 2001), Yossi Chaim returned his pure and holy neshama (soul) to his Creator.*
Mar. 11, AM
Last night just after candle-lighting, Yossi's blood pressure dropped. We had them increase his dopamine, which didn't help much. At that point, we knew that we were nearing the end.
All day Yossi clung to life. His heart beat was around 102 most of the day, and his blood pressure was barely enough to sustain life. But somehow he held on. I lay in bed with him all last night and most of today.
After Shabbos was over, we spoke with Rabbi Bart about turning off the dopamine. We also spoke with 2 heart doctors from home, On Topaz (whose son Guy is one of Yossi's close friends) and Bill Moskowitz. After speaking with them, I knew that Yossi was too far gone, and that there was no way he was going to improve. We turned down the dopamine, and finally turned it off. Meanwhile, Rabbi Ginsberg and Noam Jaffe came and sang to Yossi for Melava Malka (after Sabbath party). It was really beautiful and befitting. Lisa, her husband Smulik, and their children came and sang as well. Soon Yossi's heart started to slow down, and they left. I was laying with my arms wrapped around Yossi. His heart really slowed down, and then we saw small flat lines. I started to sob and hold onto Yossi. After he passed, Rabbi Ginsberg came in, and said a minyan (ten men) would be here shortly. I hugged Yossi, and held him a little longer. I got off the bed, and Michoel lay down next to him. After he was done, the minyan came in and said tehillim (psalms) with a lot of devotion. When it came to the Shema, Rabbi Lieff broke down. We left after that to go figure out what we are doing.
I can't stress how wonderful, loving, and caring everyone at the hospital has been towards us. The doctors and nurses made doubly and triply sure that everything would be done properly. It was an amazing zchus for Yossi that the minyan was right there to escort him towards the World to Come. The community here in Minneapolis has been like life-long friends to us. They have helped and made all the arrangements we will need to bring Yossi home. I know that the whole Richmond community is awaiting us to help us mourn.
Please continue to do good deeds in the memory of Yosef Chaim ben Breindle Leah.