Lots of news to report. 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 proporol and his morphine. From his heartrate 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 uncomfotable, 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. Finally, Yossi was all comfortable and settled down. Tricia, who is 8 1/2 months pregnant went on a break. 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 albumim 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. Stiener 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 her 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 knoweledge how to fix all these problems. He's not out of the woods. I guess that he is in critical but stable condition. I will update before I go to sleep tonight.
Many times before we have compared Yossi's cancer journey to a wild roller-coaster ride. This ride has all the scary twist and loops, with those heart-pounding drops. And just as the roller coaster speeds down, at some point it has to come up. Our roller coaster turned and started up the hill this afternoon.
Once again Yossi was very uncomfortable. He had his eyes open, but he wasn't responding or communicating with us in any way. He got very agitated. Then I noticed that the blanket covering his privates was soaked in PEE! I don't think I was ever so glad to have a kid wet the bed in all my life! The nurse took the blanket off and put on a clean one. 5 minutes later I noticed that his blanket was wet again. This is super news. Kerry (one of the Worlds Greatest Nurses) told us that he had also pooped. Right then the ICU doctor, Dr. Steiner came in with the BMT doctor, Dr. Orchard. They were both happy to hear that he had peed. After they left, I looked at the poop to see how much there was and to see if it was watery. I was horrified to see that it was basically red. I ran out to tell the doctors, who came right back in. They looked at it, and said that maybe the mucositis that was in his mouth last week had traveled down his GI tract. They said that it might also be the cause of the BP (blood pressure) drop today. In any case, if it continues, the GI docs will be in to look at him.
Tonight Marvin and Ilene (AKA Gramps and Grandma) came to visit him for a while. Yossi's NG tube (the tube that suctions the junk out of his stomach and also sends medicine in) was suctioning blood. The docs were called back. It looks like his stomach is irritated from the tube. He did get something to help calm his stomach.
Yossi's counts from this morning were good. His white count dropped down to 4.6, but that is what we expected to happen. Yossi's GCSF was discontinued yesterday, and usually that is what happens when you stop it. Yossi has been receiving blood and platelets all day. They have upped his parameters of when to transfuse him. If my count is correct, I think that he has received a total of 56 transfusions! And he might get another unit of platelets tonight. Thanks again to everyone and anyone who has donated blood and blood products. You really have no idea how much it means to us every time we see them bring in that bag. Thank you!
Yossi did not have the bone marrow biopsy done today. Between everything that was going on and his skin being so bad they held off. They did send a RFLP. I have no idea what that stands for. What it means is that they will grow the white cells and see if they are donor cells. Soooo …. Go Grandpa Go! I assume it will take a few days to get the results back on that. More on that later!
I know that this is Yossi's site, but I wanted to mention that my mom did have her surgery, and it went well. She is slowly recovering. She is in a lot of pain, but her first concern was Yossi. She was happy to hear when he was stable.
A bunch of my friends gave me a blessing before we left home that G-d should guide my decision and help me to make the right choice. When we started looking into where we should go, we were so torn. Both centers were equally good. We couldn't decide. But as we looked, everything fell into place for us to come here. I feel that G-d has truly guided us to the right institution. Between the wonderful and loving nursing and the doctors who put up with our millions of questions, I feel that we are in the right hands. They do everything right here. I feel that we were blessed in our decision.
Please continue to pray for Yosef Chaim ben Breindle Leah. As I have asked so many times before, continue to do random acts of kindness. They help to make the world a better place. So many people have asked what they can do to help. Do those acts of kindness. It will help. We also really enjoy all the letters people have written to us. Michoel and I read our email everyday. Even if we don't write back, it helps us to know that we have the love and support of everyone. We are leaning on you!
Yo, this is the P-man again, no, not the PEE-man, but the P as in PAPA man. Well, I can't believe that tomorrow will be 2 weeks since Yossi was intubated and sedated. These past 2 weeks are like a dream, I am living life through a haze, as nothing seems to change. Some days things seem to be getting better and then in the blink of an eye it all changes and comes crashing down. Things were "slowly but steadily improving " per Doctor Lewis and then yesterday morning his blood pressure crashed and it was a horrible morning. Then, his kidneys seemed to start working and then this morning, they have slowed down to almost nothing. Possible explanations are the dialysis he continues to receive or the kidneys may have taken another hit from the drop in the blood pressure. So, we waited for 2 weeks patiently, thought the renal failure was over, and now may be facing it again. On top of all that, Yossi passed, what seemed like to us, a lot of blood. Also, his NG tube was suctioning off a lot of blood. So, day after day, Yossi just lies there with all the tubes and machines. Once in a while he opens his eyes, but even when he does, he doesn't really seem to respond. One of my fears is that this will just drag on and on. I am not sure how long they can keep him intubated, but I know that there is a risk of infection from having the tube down so long. Yesterday, the fear and possibility of losing him were all too real. Yossi is so very strong, obviously, as he has persevered through so much, seemingly more than a person can take. I just hope that we didn't make a mistake with this transplant. He has had no life at all these past 2 weeks, and although being sedated has saved him from most of the pain, it is not a good existence. I never thought he would be like this, and then never for so long, as they originally planned on it being only for 1 week. We have dealt with so much, but it seems like we are finally reaching our limit. We will continue to do everything we can for Yossi, as we want him to recover and put all this misery behind him.
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 miss making cakes. (Not that I want to do any here, so no one send me any orders. *wink*) I am really getting homesick.
Yossi continues to have his ups and downs. Last night he pooped another load of blood. It is scaring us. I know you all feel so helpless, but so do we. We are here with him, and we can't do a thing for him. We can sit by his bed, and pray and talk to him. But we can't make him better. We all want him better. One active role we are going to take is to donate platelets. His platelets have been low, and they are keeping him fulll of various blood products. His skin is starting to look a little better since they are rubbing off a lot of the dead skin with his baths and putting a ton of this greasy slimy stuff on to keep his moist.
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 heartrate is also a little lower, which tells me that he is a little calmer.
Today the GI doctors are supposed to stop by and take a look at Yossi. He is going to be getting dialysis everyday for now, since his body chemicals need the help to keep him in balance. He still hasn't been peeing. Just a tiny bit. Also, there is a chance that the cyclosporine they are giving him to prevent GVH is damaging his kidney, and he could end up with permenant damage, G-d Forbid.
I know a lot of peole who read this page are not Jewish, and you have been praying for him. Thank you all so much. Rivkah Ginsparg told me a cute saying ... "Same boss, different management." Every prayer helps. For our friends back in Richmond, there are a number of oppurtunities for you to help Yossi spiritually. The Bais Midrash study program has started up again on Sunday nights. Also, there is minyan in both the morning and the evening where they say Tehillim for Yossi and also make a misheberach (prayer for recovery) for him. If you want more information about these programs, please email Bruce Selznick. The more people who attend and answer "AMEN" to the prayers for Yossi's recovery will help G-d to hear to the request better. There is strength in unity.
Colleen Ward told me, "When you look out at that window tonight, know that all around the world we are praying for you." Such a beautiful thought. Yes, we will look out and see and feel all the love and prayers being sent from all over.
Please continue to pray for Yosef Chaim ben Breindle Leah.
Dr. Steiner, a wonderful and kind and caring doctor spoke with us about weaning Yossi off sedation. She asked US whether we wanted to try or not. She felt that we had a handle on his pain, and it was up to us. This was scary! It's an awesome responsibility. But, we felt that for Yossi it might be a good idea. We feel that he might be scared since he can not communicate with us. Yossi is extremely articulate. He can tell us exactly what is bothering him. Now with the tube down his throat, he can't do anything. It must be so scary to wake up, be hurting all over, and not to tell us what is wrong. Everyone here is so good to him. They speak to him like he is awake and understands. So anyways, we are watching him very carefully to make sure that he isn't in too much pain. If he is, then we aren't going to try to extubate him soon.
The GI doctor stopped by. Tomorrow morning she is going to "scope" him. She will use a fiber-optic "looker and nipper" to take a look and small piece of his intestines. If the the test comes back that there is no GVH, then on Sat. he will have to have to get the upper endoscopy. Dr. Orchard is going to give Yossi one more dose of cyclosporine (CSA) and then see what the scope shows. He really feels that Yossi does have some GVH, and is very hesitant to stop the CSA. (The renal doctor feels that the cyclosporine is causing his kidneys to fail.) SSSOOOOoooo, a lot is riding on this test tomorrow morning. We won't get results back until after 5pm tomorrow night. We won't be able to update the site until after Shabbos on Sat. night.
I forgot to mention this morning that his white count came up on it's own. For the last two days its been falling. This morning it came up to 3 (3000). So that is good. Hopefully all those cells will head off to help fight whatever he has. One of Yossi's cultures came back postitive, a gram postive cocci. This is helpful, as they can now fight the exact infection. Hopefully this will help. They are fairly certain that this bacteria is what caused his pressure to plummet the other day. This culture is the one they drew right when it dropped.
His skin is really looking a lot beter tonight. (Even better than before.) One of the nurses from the adult side, Pat, has taken a great interest in Yossi. She stopped by today for a visit and recommended that they wrap Yossi's hands in a wet washclothe, and then put them in a chux so his bed won't get wet. Bethany, one of our favorite nurses (we have so many favorites!), did this, and spent a couple hours peeling off the dead skin from his hands. His poor hands are so bloated and fat. They look like little water balloons. Or those rubber surgical gloves blown up. So puffy. Even Dr. Orchard said they have to hurt. Poor YossMan ... lays there so calmly. Tonight our nurse Kristy is going to work on his legs. Talk to you tomorrow!
Please continue to pray for Yosef Chaim ben Breindle Leah.
It's Rosh Chodesh Adar! Today starts the new Hebrew month of Adar. When Adar arrives we increase in our happiness. Historically, Adar has been a month where good things happen. (We are advised that if you have a court case pending, it's good to have it pushed off until Adar.) It was during this month that Haman tried to annilate the Jewish Nation. When we found out about it, we fasted and prayed. G-d dipped the scales in our favor, and Haman and his sons were the ones who were annilated. So too, Yossi is facing a monster that is trying to take over and G-d Forbid destroy him. But with the strength of Adar and the fasting and prayers we have all offered., Yossi will G-d Willing turn the corner and his demon will meet it's demise.
Meshehneech'nas Adar Marbeem B'Simcha (When Adar arrives we increase our joy.) I hope that we will all merit to witness this miracle and celebrate Yossi's complete recovery!
As usual, there is way too much going on with Yossi and being done to him. This morning, the nurse felt like he may have had a seizure, so Neurology came down and they will do an MRI late this afternoon. This is not going to be much fun for Yossi, as logistically it will be hard to get him down there with all his machines and tubes. He wont be able to be on the vent during the test, so they will have to manually bag him. The table is hard and it is an enclosed space. They will have to sedate him even more for this. Plus taking him out of the room isn't good as far as germs go. He also had the scope done this morning and there is definitely something abnormal there, we are waiting to find out if it is Graft vs. Host or some other infection. At least he won't have to have the scope down his throat now. Once they determine what it is, it will help them to decide what to do about the CSA and his kidneys. Oh, if he is having seizures, it could also have to do with the CSA and that would be another strong reason to stop it...
Since the possible seizures this morning, Yossi did seem to be slightly more alert at times, even minimally responding to us.
The ICU doc turned the ventilator off and Yossi even took 2 breaths, although we had to almost yell at him to get him to do it. Considering he had a lot of pain medicine before that, it was a good sign.
So, we should have more info late today or tomorrow.
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. The doctors aren't sure, but they suspect that his kidney problem is from something called HUS. Cyclosporine might be the cause of it. Dr. Orchard doesn't want to discontinue it because of the severe GvHD. There is another drug they can use called MMF, but there isn't enough data on it since it's a new drug.
Yossi also had the MRI done, which came back normal. So Dr. Orchard feels more confident with his decision not to discontinue the CSA. However, since he can?t really go up on it due to his kidney problem, he is going to more than double his prednesone (also called dreadnisone due to it's yuchy side effects). Yossi also might have another problem called TTP. This has something to do with his plasma. So in addition to being hooked up to dialysis for 3 hours a day, he is going to be hooked up to this other machine for a bunch of hours. The machine pulls out the all of his blood, takes out the plasma, gives him new plasma, and puts it back into him. They are going to give it to him for 5 days. If he doesn?t have TTP, it won't hurt him. If he does have it, it should help.
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 germ doc, but I don't want them to take a biopsy of his face. (It would leave a scar.)
Yossi is still very strong. I told him that he is a cancer warrior and he is going to get better. My mother in law said that he nodded his head yes. He did squeeze Dr. Orchard's hand last night. He does get uncomfortable, but it seems to be mostly when he is going to poop those disgusting bloody poops. It must hurt him so much. I also fear that he wants to tell us what is bothering him, and he can't. I keep bugging all the doctors to lower his morphine so he can breathe on his own and finally get the tube out.
Tonight there was a gathering of women to pray for the situation in Israel and the cholim (sick people). Yossi's name was on the list here, in Baltimore, and in Richmond, to name a few places. Even though things look so bad, I still feel very confident that the will overcome all these obstacles. He wants to! I went to the gathering here in Minneasota. It was very nice and inspirational. The rabbi who spoke was just in Isreal, and he prayed for Yossi in some very holy spots.
On a side note, I was very happy for all our friends in VA that you finally got some snow and were able to enjoy it! We got snow last night, about 4". It rained some today and tonight, and now it is starting to snow again. We are expecting about 4-7" of snow. If it's nice, we might take the kids sledding somewhere.
Please pray for Yosef Chaim ben Breindle Leah.
I am rushing to get this update done, so please forgive any typos.
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 plasma apheresis 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 a 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.
With Yossi on very high doses of steriods the doctors are monitoring his glucose very carefully. They have been watching it for the whole time. A couple of times it got way to high, and he has gotten insulin. But now they will lower how high they will let it get. (A normal glucose level is between 100-200. His has been hovering close to 400 before they give insulin.) They are also concerned about the other side effect of prednisone, which is high blood pressure. So they will be watching that.
We did get a lot of snow last night. We are going to take the other kids sledding today. And yes Anna, I have the camera to take pictures!
Keep praying for Yosef Chaim ben Breindle Leah. I will try to update once more before I got to sleep tonight!
This morning was so good for Yossi. Tonight was very hard. He actually managed to throw up. He also passed 3 pure bloody stools, filled with tissues and large clots. Amazingly his hemoglobin remained fine.
The kids and I went sledding, and Michoel even put all the pictures on our computer so I could update the site tonight. Unfortunately, the computer did not cooperate, and I am using the nurses computer. (SSShhhh, dont' tell anyone!)
We also went to the Avraham Fried concert. It was very bittersweet. The first song he sang was one of Yossi's favorites. The 3rd song into the show he dedicated to Eli (a young man close to Yossi's age who was hit by a car and mail truck the week before we arrived) and Yossi. After the concert I was told that Avraham Fried would come by to visit Yoss. When I got to the hospital and told him, he raised his eyebrows in recognition. The nurse, Sylvia laughed. She said that Yossi had been a little stubborn tonight regarding the placement of his hand, and at one point did the same thing to her. I actually told him that it was OK for him to be a little stubborn now. The hardest thing tonight was that his right shoulder was bothering him, or his port was bothering him. He kept on wigglying it. We tried asking him a million questions. I even wrote on a piece of paper HURT and ITCH, and asked him to point to which one was bothering him, but he didn't respond. As I have said a million times before, I can't wait for the tube to come out. I know he is anxious.
Keep praying for Yosef Chaim ben Breindle Leah. (I will try to post a longer update tomorrow.)
As promised, here is the low-down on yesterday's activities. (Sorry it took so long to get the pictures uploaded; this computer really hates me.)
When we were ready to go sledding, we had one missing item -- the car keys. Michoel looked all over at the hospital, and I looked at the RMH. No one could find the keys. We were lucky that my new friend Chaya Rena was able to come pick the kids and me up so we could still go sledding. Michoel has no idea what happened to the keys. He does have one theory that they might have fallen out in the snow. (Or Sruli-monster struck!)
Chaya Rena dropped us off right behind the school, Torah Academy. There are some small hills there, and no one had ruined the snow yet. Shauly and his friend Menachem got right down to sledding. Chanie was a little nervous and she went down once with Sruli. After that she was fine and was willing to go down on her own. Sledding down was the easy part. I forgot that once you go DOWN, you have to HIKE back up the hill. The snow was pretty deep, and we had a hard time getting up. Finally I realized that if put the baby on the sled we could pull him UP the hill. (I'll tell you those hills didn't seem so small THEN.) It was a lot of fun. At one point we decided to try and go towards the swing set in the park. But the snow was so deep we had to turn back. Shauly also tried to make a snow angel but it was too deep to get up in. After close to an hour, we decided we were tired and cold. So we headed back up the hill to wait for Chaya Rena to pick us up. (Anna, I did go down the hill twice headfirst. I wouldn't let the kids use the camera, so you will have to be content with this shot of my sled and me.) Overall if was a very fun and memorable day. (Goldie had slept over at a friend's house which is why she isn't in any of the pictures.)
In the evening, we went to the Avraham Fried concert. The kids really enjoyed it. This morning, Avraham Fried came to visit Yossi. He is truly a mentsh (nice person). He gave Yossi a beautiful bracha (blessing). Then he sang him his favorite song, Shalom Aleichem. After that he sang him another song, Chazak which means strong. Yossi started to get uncomfortable, as his shoulder had been hurting him. It was a really nice visit and I camcorded it so that Yossi will be able to enjoy it when he is more alert.
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.
Ever since the night that Yossi peed a couple of times he hasn't done anything. So they were back to putting in a cath every other day. This morning when they cathed him, they got 0 CCs out. Yes, nothing! Then this afternoon during dialysis, I saw a wet spot on the blanket. As they changed his linen, they saw that it was a lot of urine. When they weighed it, it was almost a liter! Everyone was pleasantly surprised. (They were tickled yellow.) This gives us some hope that his kidneys will start to function again on his own.
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.
Keep praying for Yosef Chaim ben Breindle Leah. He will get a CT scan tonight in order for the doctors to track it's growth. So he will have another field trip tonight.
[He says:] I will make this short and unfortunately not sweet. After a so so day, we got some more potentially very bad news. There is a spot on one of Yossi's lungs that they think is a fungal infection. To make a long story short, this is terrible news. They will have the specialist read the scan in the morning and then they may do a bronchoscopy, where they insert a tube to look at it. But, depending on the position, it may be too hard to reach. Although he has a good white count and is on strong antibiotics, the steroids he needs to try to save him from the GvHD will make it hard to cure. He also has one on his face, but it is much easier to treat on the outside of the body. Another option is surgery to remove it, but that is most likely way too risky in his condition.
Yossi had dialysis and plasma pheresis today and both of those went well. He also peed a great deal after dialysis. But, they lowered his morphine again and put him back on propofol, so he slept most of the day. When he was a little alert, he was very out of it and very shaky. He is like an old man, sad to say. His legs are wasting away, he is puffy in other places, he has blisters on his terrible skin. He is still on the breathing tube and they had hoped to finally remove it tomorrow, but if they have to do the bronchoscopy, it will have to remain in a little longer.
This is no life for anyone, let alone a vivacious, outgoing child. Everytime things look a little better, something else happens. I know he is so scared. He cries sometimes, he cannot talk to us. He hates that he is treated like a baby when it comes to body wastes. He hates that he can't move around and talk to us. What did we do to him??? Will he ever again be alert and able to talk to us? I miss him so much, I am in agony. I want to see his smile again. Why does he have to suffer so much??? He never did anything wrong!! I know that people all over the world are thinking about him, praying for him and wishing him well. But, it doesn't seem to be enough. What else can we do for him? I would do anything to save him. During his CT scan today, I had to stand in there and hold his arms behind his head for him. He can't even move his body. How terribly sad this is for him and for everyone else. I wish someone would tell me what to do for him...
Well, this wasn't so short after all, sorry. I don't want to lose him, but I am so tired of seeing him suffer.
[She says:] I know that Michoel has said a lot of what I feel. I read his update, and cry too. I look at Yossi, and I see the beautiful young man I know. I see the loving, caring boy he truly is. I look past all the horrible things on his body ... the oozing open sore from skin so tender that bumping against it causes it to blister, the horrible scab-thing on his face, the gigantic blisters on his arms, his face so puffed up that he can't open his right eye... I see the boy who loved to sleep over at his friends house, and LOVED to play football with his friends. One of his greatest joys was to go Shabbos afternoon to where all the boys were playing together. Yossi loves Mishmar, the afterschool program that combines learning and sports. Yossi loves life, and as Michoel says, what kind of a life is he living right now? He can't ask questions, or tell us what hurts. He isn't sure what is going on, and I know he is scared, if not terrified. I can't even begin to describe the anguish we as parents feel as we watch him living through this nightmare. It is torturing us. We stand by helpless, except to hold his hand, or rub his forehead. Yossi was due to begin putting on tefillin two weeks ago. They sit in his room, untouched. It breaks my heart. We feel we have done everything HUMANLY possible for him. We pray, we give charity, we beg and cry and plead for his life. We don't have any answers. We don't know why. It's so unfair to him, to us. Why? I know that none of us are meant to live forever, but the natural order of life is parents grow old and die. Not children. Children are pure, innocent. They are our future. It's not fair for any child to go through this. He is being robbed of a very special time in his life, one that he will never get back... the excitement of preparing for his Bar Mitzvah. I play his tape almost everyday, but it's not the same. He should be back in Richmond, looking for his suit while I figure out what menu we should have. All the fun and exciting things in life. I also feel so terribly guilty. I know in my head that it's dumb, and you can't change the past. But there were times we said NO for no real reason... The time he wanted to sleep at a friends house, or wanted a certain toy. I wish I could go back in time, and change how I did some of those things. I wish I could go back, and erase this horrible nightmare that we have been living for the last I don't know how long. I konw salvation can come in a blink of an eye. Well I've been blinking. When will we see our Adar, our time for joy? I feel like we have been streched to limit, pushed as far as we can go. I want my Yossi back. I want to hug and to hold him. I want to see him smile. His eyes light up a room. Yossi has an inner beauty, a gentleness to him.
All I can say is to PLEASE PLEASE PLEASE continue to beg and plead with G-d to grant Yossi a long and healthy life. I know I can only stand my kids cries for so long. G-d has to listen to all of us as we unite together and cry for his life. Yossi is fighting truly for his life now. He needs your help.
Yesterday was very hard for me, Leah. I must have been very sleep deprived, because I was getting very upset with the residents and started to tell various workers off. I felt that it would be best for me to stay away and try to rest up some. I spent today just relaxing at home. Also, Shauly has been home sick with a fever for the last two days.
Yossi's white count was very high today, over 13K. The infectious disease doctors felt that it would be in his best interest to keep his white count high, so he has been getting GCSF again.
They did the bronciscope (spelling?), but they won't have the results for a while. Also, the thing on his face is getting bigger and the doctors are all concerned, but no one seems to know exactly what to do about it. Dr. Orchard spoke with his brother who is a plastic surgeon. Meanwhile, it grows and grows. At least they finally got that mask off his face, and they are holding the tube in with tape. That mask was putting a lot of pressure on his face.
Yossi was basically out of it all day. It's the propofol that is making him sleepy. (This is a sedative that they use for surgery because it has a short life. They turn it off, and 20-30 minutes later a person is awake.) The doctors have also been working on lowering his morphine.
Basically, everything is still the same. It's getting very hard to remain positive. I know we need to "think good and it will be good", but when I hear that so many more things are attacking his body, it's hard. One really nice note ... a couple of nurses have told us about a Jewish girl who had a transplant in '94 and had the same complications Yossi is having ... renal failure, on a vent, grade IV GvHD, etc... Weeellll, she came back in October for her yearly check up. She was homecoming queen, is in college, doing well. Not only that, she was in the very same room we are in! My friend Ellen always says, where there is life, there is hope. And another friend Adina reminded me that so many times Yossi's roller coaster through cancer has hair-raising twists that make you hold your breath, and then a second later I would post that all is well. Sooo, I guess that I do see that the salvation CAN come in a blink of a eye, but I am still waiting.
I thank you all for your wonderful support. I look out the window, and I think of all the friends I have made over the years, and how much you have helped me through this. Don't think you are all standing by helpless. The emails are a real pick-me-up. My friend Joan wrote such a beautiful letter. As soon as I get her permission, I will add it to the site.
Please continue with your prayers. I am sure that it is your prayers that have helped him this far. Pray for Yosef Chaim ben Breindle Leah.
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.)
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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