It is so wierd 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. Even the light in the room bothered his eyes, so he didnít want it on. Goldie, my oldest daughter, arrived yesterday. She was upset to see him like this. She didn't want to come back to the hospital. Then towards the end of the day, Yossi perked up a little, and let us put the lights on for the first time in days. He talked with her, and she felt better about the whole situation. I am not sure what she pictured, but I donít think that this is what she thought it would be.
Sruli was happy that Goldie is here. They have been inseparable. They eat together, and then watch TV sitting in the same chair. They have even been sleeping together ever night.
Grandpa left to go home today. He is feeling better. He is sore. Grandpa had a very hard time leaving. I have a feeling that he will be back soon.
Today Yossi was doing a lot better. He got really upset when the hospital teacher came in. He was crying that he didn't want to work with her, and he just wants to work by himself. He doesnít like her, but he has a hard time adjusting to new people. Soon after that Dr. Ramsay (the doctor who did the workup when we came) walked in. She really encouraged him to walk around. Lo and behold, he listened to her! Not only did he get out of bed, but he sat in the chair and read for a long time. Then the kids "welcomed" the new resident with two cans of silly string. Yossi squirting silly string. They had loads of fun. Goldie gets into the act. Soon after that he started to throw up, which spoiled all the fun. Sue Elms came to visit me with her two kids. Goldie and her daughter Mikaela got along real well. They both enjoy Origami. Sue's son DJ wanted to play with the baby. They had a nice time. When we left, we went back to the RMH together. Sue brought Sruli a bag of toys from her neice. Sruli really enjoyed them, since we didnít bring too many toys for him. This is one of the big parking garages. Itís the type of toy he totally enjoys, but I didnít want to shlep. Sue Elms, Sruli, and Leah in the hospital lobby.
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 mouthsore 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.
Keep praying for Yosef Chaim ben Breindle Leah.
Real quick update. Yossi threw up twice, once in the night and once this morning. But he is in very good spirits. The teacher came in, and he has agreed to the plan we laid out to help him keep up with his school work. We also read all the entries into Yossi's guestbook which he enjoyed. Thank you to all the people who took the time to write. Maybe I will update some more later today.
Pray for Yosef Chaim ben Breindle Leah.
Last night, both Michoel and I stayed at the RMH to eat Shabbos dinner together. After dinner, I walked throught the snow and ice to come back to Yossi. (It's only a block and half.) When I got here, he was sitting up and readying. Later he threw up again, and there was a lot of blood in it. I was right about my theory regarding the mouth sores in his mouth causing the bleeding. He is getting morphine to help control the pain. He is also getting phenergan round the clock to help control the nausea and vomiting.
Shabbos morning started off as the best day yet. Yossi woke me up at 4:45 to get him benedryl since he was itching so much. I couldn't fall back asleep, so I read for a long time. Finally, I was so tired I feel back asleep. Yossi woke me up again, this time for a good reason. He had already washed "negel vasser" (a ritual hand washing in the morning), put on his tzitzis (four cornered garment with fringes), and davened shacharis (prayed the morning prayers). Then he wanted to climb into my bed to snuggle. It was so nice. We layed together for a long time, and then Yossi feel asleep.
Yossi woke up when he felt he was going to throw up. It's so gross, the color mixed with blood. But that is when his nurse Candy explained that it was fine. Once again, Yossi was doing fine. I went back the RMH to eat lunch with Michoel and the kids. (Well, two of my kids.) Then Michoel came back for the afternoon. After Shabbos was over Michoel told me that Yossi had finally gotten a fever. This is pretty much to be expected due to the fact he basically has no counts. He got a transfusion of platelets since he has been throwing up blood. Normally they don't transfuse until they bottom out at 10. Yossi was at 26 this morning. They are going to try and keep him at 30 with transfusions. He will probably be needing red blood cells soon. After the transfusion, Yossi was taken down the X-Ray. First they want to make sure that nothing is in his lungs. Second, they want to have a base-line to compare to later if he gets more fevers. Finally, I haven't mentioned this, but Yossi has been having an elevated glucose level. If it continues to be high, they will have to give him insulin. Oh yeah, we just found out that his bilirubin is high. That explains why when I looked into his eyes tonight they were yellow.
On another note, Yossi's tefillin are ready. (There is no way I can spell the English translation of tefillin. They are black boxes that have parts of the Shema in them.) They should be here when he has to put them on next week. That should be so exciting.
My mom is coming tomorrow. And Goldie is going home on Monday, but she doesn't want to. Keep praying for Yosef Chaim ben Breindle Leah. Now is when it gets really tough.
OK, I am having a lot of problems with this update. If there are mistakes, I am sorry. I am about ready to give up.
If you were here before, and saw that I was supposed to update the site in a few minutes, sorry. He called down to Ultrasound, and I had to leave. It turns out it was the same woman who took us last time! And she remembered us! I have some great pictures to upload later!!!
Yossi isn't doing well. He is running a fever that they can't control. It is now up to 104. We have left him in just a tee-shirt and sheet. We put icepacks in all the important areas. I also put a cool washcloth on his forehead.
Yossi has continued to throw up everyday. Yesterday he was scared because it was bright red. The nurse also got a little worried. His platelets were in the OK range, but he did need two units of packed red cells yesterday. Early this morning he got another unit of platelets. Normally they try to keep the platelets above 10. But since he keeps throwing up, they are going to keep his above 30. (These are the numbers they use. Whenever you hear someone refer to counts, it means the number of cells in his blood.) Yossi also has a bright red rash all over his legs and his back. He is very uncomfortable, just feeling very achy and overall "blah". His mouth sores are pretty bad, so he is on a continues morphine drip. The doctors think that the mucositis (mouthsores) that he has in his mouth and throat may also be going all through his GI track. They think that this might possibly be what is causing his fever. So far all of his cultures that they have taken have come back negative.
Through all of his discomfort, he still has managed to keep a semi-smile on his face and keep the lights on. When Dr. Ramsey was checking him this morning, Yossi silly-stringed her! He got a great big smile on his face, and once again his room is covered in silly string.
Goldie went back to home today. Chanie and Shauly might come next week and they are real excited. I miss them terribly, and so does Sruli. Last night he said he wanted to go back with Goldie. Goldie and Sruli snuggle up together on her last night of this visit.
I told you I would give you a view of my apartment at the RMH. This is the kitchenette. It has a microwave that I kashered, and a small fridge. Behind it is a large cabinet to store food and stuff. Then you walk straight to our diningroom. The table is a tiny round table with 5 chairs around it. There is also a high chair for Sruli, but he doesn't like to use it. From there you can see our livingroom. It has a sofa bed, as well as a TV and VCR. Right off the living room is my bedroom. The bedroom has a queensize bed, as a well as a twin for Sruli. I put the chair there so that he didn't fall out of bed. You can go to the loft from off the livingroom. It's a spiral staircase. In the loft there are two twins beds. The baby loves to go up the stairs, and it makes me real nervous. Looking down from the top of the stairs you will see why I get nervous when the baby is up there!
And if that wasn't enough pictures for you, here are a whole group of pictures. I am going to put them up on the right spots in the old updates. But for right now, they are here.
Pictures from today, Feb. 5, 2001.
The red rash on Yossi's back.
Yossi has to be weighed everyday, sometimes twice a day.
I found this one that someone took of Sruli, and it's so cute.
Sruli hates his ski mask I got him.
Here are some old pictures that never made it onto the site.
Yossi's window that looks out of his room to the hall.
The package that arrived from school.
What is in the box?
Oh cool, it's a hand blanket for Yossi to use.
Today was another hard day for Yossi. He woke once last night with a fever of 104.5. Then, this morning he got a nosebleed. It bled and bled and bled and bled. Michael was with him, and said that it was coming out of his nose and his mouth. It took them over 45 minutes to stop it. They gave Yossi a unit of platelets. When I arrived a couple of hours later, he had another nosebleed. So he got another unit of platelets. He continued to run a high fever, hovering between 103-104. The doctor decided to do a CT scan to try and find where the infection might be coming from. He now has a morphine pump that he can push a button when he wants morphine. He is such a good boy, and trying to follow their rules so carefully. He thought that he could only push the button once a half-hour (2X an hour). But the nurse explained to him that he could push it when he needs it, and they will adjust it to help him.
I ran home for dinner, and when I got to the RMH, there was a package waiting for Yossi. I hurried back to the hospital to give it to him. It was from the NY Giants. Michael's friend Tammy had contacted them, and they kindly sent him this package. He was very excited when he opened it up. There was a picture of the whole team. There was a program from SuperBowl XXXV. There were two Giants key-chains, and a soft squishy football with their logo. I hung that on the IV pole, and if the nurses don't like it, they can jump in a lake. The football stays. He got two shirts with their logo on it, on in blue and one in white. I told Yossi to wait until his nose stops bleeding before he wears one of them. And finally he gets to the best part of the package, an official football autographed by the whole team. He is thrilled with it, and I want to thank Tammy so much for taking the time to arrange this for him.
Yossi tried to drink the contrast that he needed for the CT scan. Bethany (his nurse tonight) put it in some coke for him. Then, Bethany asked me if they had given him anything for his nose to stop the bleeding. I told her no. So she ordered him some COCAINE. Yes, you read that right, my son is now on cocaine. This is just too funny. There is a warning on the label that says it can be addictive! LOL! So I bought him a Coke, and the nurse gave him some coke. My son the crackhead. It's a very mild dose, only 4% and it's used to constrict the vessels in his nose. Supposed to be real good at that. On top of the cocaine (yes, that is what it says on the bottle), he is getting morphine, Benadryl, phenergan, and ativan. Enough to put anyone to sleep.
So now Yoss has coke shoved up each nostril, and his lips are caked with blood. They take him down for the CT scan. So much for not being allowed out of the room. So far he has gone out of his room for a field trip 3 days in a row. When Yossi got back, he took a nice shower, and we took his temperature after he got back into bed. It went down to 102.3. I am not sure if it stayed there. Oh yeah, he has gained another kilo, bringing his weight in pounds up to 108. He gained about 16 pounds on his 2nd round of chemo, and now he put on another 10 pounds. His rash on his legs has turned dark purple. It is going down his legs and arms.
Last night in all the attempts to fix the page and get all the pictures to work correctly, I forgot to ask you all to pray for Yossi. So I will ask you twice. Please pray for Yosef Chaim ben Breindle Leah. Keep Yosef Chaim ben Breindle Leah in your prayers.
This has been a very hard day for both Yossi and all of us. The resident woke me at 6:00am 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.
So far today we have had a visit from the ultrasound (which was fine), the X-ray (no results yet), and people from ICU. We are waiting for the renal people to come, as well as dermatology to check out his rash.
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.
I want you all to know that it has been very hard for me to update his site this time. It seems that computers are working against me, plus I am really tired, and not having much time to update. On the other hand, I feel the need, almost a compulsion to maintain his site to document his journey. Not only to help other facing this situation, but also for ourselves to look back and remember EVERYTHING. I want to remember the bad times as well as the good times, because each and every second I spend here with Yossi is precious.
Yossi really perked up when Michoel came this afternoon. His breathing got a little better, as well as his blood pressure. This evening his tempature finally got down to 101.2. The doctor said that Yossi is a little more stable now than he was this afternoon. He did receive two more units of blood and one more unit of platelets. He got an antibiotic called Ablecet B (??) which is an excellent antibiotic, but it is also called "shake and bake", which is of course what Yossi did. He got terrible chills (shake) , causing his temp to rise again (and bake).
Yossi's creatinine continues to climb. It looks like we will probably be having to put Yossi on dialisis. This will not be a permanent situation. He will have to have surgery to take out his hickman, and put in a catheter. The reason I think that they are really leaning towards this is that tomorrow they are going to move us to a bigger room. You know, when we first got in here I was disappointed with the room. But now they are going to move us for a bad reason. They need to have more room for the equipment. I guess it's the old lesson to be happy with what you have, right?
They continue to monitor Yossi very closely. His blood gasses have gone up. It means that when he breathes out, he is not getting out enough carbon minoxide. They might need to put an oxygen mask on him during the night.
Yossi gained another 1.8 kilos! His legs are huge, as his is face, fingers, toes, etc. He has popped several blood vessles 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.
And for the good stuff, some pictures!
My mom arrived on Sunday to come help us. She was happy to see Yossi. We had to go on 3 field trips so far. The first day we went down for an X-Ray. It was so wierd for us to leave the room. The next night, we went down for an ultrasound. It was nice to see Melissa, the tech who helped us last time. I couldn't resist the opportunity to show you the tiny locker Yossi stuck Sruli in! The nurse gave Yossi COCAINE to help his nosebleed to stop. Then Yoss opened his package from the NY Giants. And here is his official Giants football. The trip was for a CT scan. The tech was really nice. He filled up viles for the contrast using a gigantic needle. That is one needle I wouldn't want to bump into in a dark alley! In Yossi goes. He was very good during the scan. Mommy had to wear a very heavy apron. After we got back to the room, Yossi took a nice shower. In bed, all clean, he gave me one of his famous smiles. He is a trooper, even when he was put on oxygen. And finally, Goldie painted Yossi's window, hoping for snow. And we got it. 6" with 6 more inches tomorrow.
The families here in Minneapolis and St. Paul have been wonderful. They have helped us with cooking and basically anything we have asked for. There is no way for us to thank them. We truly appreciate all their help and heartfelt good wishes and prayers.
Today in Richmond a group of women gathered together to say prayers for Yossi. I personally feel that the prayers that were offered, as well as the other prayers said around the world for Yossi has been helping. While things still look bleak, he is still here, and still fighting. For all of you who have asked what to do, I will say it again.... Do a good deed each and everyday. Do it for Yossi. And please keep praying. We can't get him on enough prayer lists. I don't care what your belief or religion is. I just want each and every person to beg and plead with G-d on his behalf. I would especially appreciate anyone in Israel who can get to the sacred places to pray for him there. And any of the athiests who read this site, please continue to send us your good and postitive thoughts. Pray your hardest for Yosef Chaim ben Breindle Leah. He needs a complete and totally recovery NOW!
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.
The community in Richmond has been fantastic. On top of all the prayers they have offered up, they helped us tremendously. Michoel called his parents today to fly out with the kids. The Lutzky family has given our family their frequent flyer miles so that they have open-ended tickets and can return home at anytime! There is no way we can thank them enough for this help. It has eased a burden during this hard time.
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.
We will update soon. Please keep praying for Yosef Chaim ben Breindle Leah.
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 up when 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.)
Yossi did well through the surgery. The surgeon was a wonderful guy, who was concerned for us as well as Yoss. Yossi was bothered by flabs of skin that were loose, and hanging around in his mouth. Before he went down for the surgery, Kendall (his super, terrific nurse) removed a few of them. Kendall told Yossi that the other ones were still attached, and to leave them for now. When they brought Yossi up after the surgery, he had some blood drooling down the side of his mouth. The anesthesiologist said that Yossi had asked him to pull them when he was asleep. This was a bad idea because of his low coagulates. All night nowa little blood has been oozing from the cornor of his mouth. So the blood is not clotting. This is going to take a while to heal.
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.
Yossi is pretty heavily sedated. When the nursing staff moved his legs to try and get his weight, his eyes opened, and he moved a little. The ICU doctors have decided that he needs to be real sedated so that he isn't uncomfortable. They want him to be as comfortable as possible. Yossi has a tube down his throat. This tube is hooked up to a ventilator that will breathe for him. He also has an NG tube in place. (It's a tube that goes down his nose and can put stuff in his stomach as well as drain the acid out.) 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. If you have ever G-d forbid had to have your child go to the PICU, you will know what I mean. You get kicked out of your room, and sent into a center where they take care of only the sickest kids. The moving is hard. But here he just stays in his room, and gets the same nurses he has been having. The rules change a little, as now he nurse stays in the room, and never goes out.
Yossi's fever has slowing been rising. As of right now, it's 104.5. He is getting more tylenol down his NG tube to help lower the fever. We also found out for sure that the rash is an allergic reaction to one of the antibiotics he got this week.
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.
One side note. The ICU doc ordered a chest X-ray. This will help to decide about taking the tube out. So in BURSTS this wild guy, and starts moving things around. I ran over to Bethany (Yossi's nurse), and tell her to make sure he is gentle with Yossi. Well, as we look over, he is pulling the IV pole away from Yossi. ALL OF HIS LINES ARE ATTACHED TO HIM! I lunged for it, and Bethany yelled at him to stop. Then she lectured him to take it easy, and not rush around so much. He said he was paged 3 times in the last 5 minutes to do this STAT x-ray, and he thought it was life or death. Bethany told him it was going to take a long time if he pulled all his wires out. At this point, I told him to be sooo gentle with Yossi, as he is in a lot of pain if you move him to quick. So what does he do? He punches some button that pumps up the air mattress on the bed! Yossi's eyes flew open. Then he comes over to my side to shove the film under his back. As Bethany picked him up he grimaced a horrible grimace. His face contorted in pain. Bethany and I ran for cover in the bathroom as he took the picture. Boy, we sure were glad when he was gone. A bull in the china shop!
Keep praying for my little guy (even if he is almost as big as me). Yosef Chaim ben Breindle Leah.
This is why we are all praying. Help Yossi.
Today the magic word is stable and white count. Yossiís condition although critical is stable. They have him hooked up the vent to breathe. The dialysis is pulling off the liquids. But now his skin is starting to break down. He has gigantic blisters that are breaking out all over. They are treating him like a burn patient using those creams (I forgot the name of it) to help his skin to heal. It is also worrisome as the broken blisters can turn into a source of infection. The biopsy they took yesterday came back showing that the rash is GVHD. But the dermatologist and Yossiís doctor donít think that itís GVHD. They still feel that the rash is a drug reaction. They feel that it started too early, on day +3. So they are going to give him extra CSA to help prevent bad GVH. But that is going to affect his kidneys, which means he might have to be on dialysis for a little longer.
The good news we got today is that his white counts have started to rise slightly (.1). So hopefully the marrow is starting to engraft.
Today when the nurse was cleaning out Yossi's tube, it caused him a lot of pain, and his eyes opened. I told him that I was there, and he smiled at me 3 little smiles. It made my heart fill with joy.
Yossi was hooked up to the Bi-Pap machine to help him breathe. He sorta woke up here, so we took a picture of him with his new tefillin in his right hand.
One of Yossi's favorite nurses is Kendall. Kendall has been a nurse for 18 years. He is so knowledgable, and he is a friend to us too.
Last night, when Yossi was first hooked up to all the machines. You can see that his temp was up.
Keep praying for Yosef Chaim ben Breindle Leah.
Yossi's white count is up to 350 (.35). This means that his body is starting to make white cells, which means that the marrow is starting to engraft. As his body makes more white cells, it will go to the blisters and to the mouth and start to work on curing the problems that are happening there. This is also the time that they are going to start looking for graft vs host disease (GVHD). They have started to give Yossi cyclosporin (CSA) which is to help fight GVH, but they can only give him a small dose. CSA is one of the drugs that is hard on the kidneys, hence the smaller dose.
Yossi's lungs have shown a lot of improvement. They still need to keep him on a vent until his mouth and throat heal. They are guessing it might be a week before they can try to take it out. While he is on the vent, they have him so sedated that he is unconsious. They don't want him to suffer or to be in any pain.
Today they put a cathater in him, and pulled around 300 CC of urine out of his bladder. They don't know when his body made this urine, so they are going to do it every 12 hours until his body begins to produce urine on its own. Then they will have to put a foley in. Once the kidneys start to make urine, they just keep doing it and doing it and doing it. At that point, they will have to give him extra fluids to keep up with what his body is putting out.
Yossi had a nice bath today, and there are no new blisters on his body. They were also able to clean the surgery site, so he doesn't look as bad. While they were bathing him (a sponge bath), they found stool, which means his bowels are working.
Overall, while Yossi is still in critical condition, he is stable. Please keep praying for Yosef Chaim ben Breindle Leah.
One more thing. I am reading all the email people have sent me. I just haven't had the time to respond to them. Also, between our lap top that uses Juno which cuts us off every few mins, and the computer in the hospital with not enough RAM, I have had a lot of problems with getting the pictures up correctly. Everything seems to take two or three times as long to do. I apoligize if the site isn't perfect, but I am trying. One other thing, when I finally did get a chance to catch up on my emails, I found out that it wasn't Michoel's friend Tammy who got Yossi the Giant's package. All of my friends back home know how much I love the Butterfly Shop. Well, it turns out that the owner Shirley called her friend who got in contact with the PR guy. That is how Yoss got that terrific package. Tammy did succeed in getting through to this same guy, and Tiki Barber was going to call Yoss. Well, maybe he can call when he is awake! BTW, I just found out that when they put the cathater back in tonight, they got 10 CCs of urine which is definetly new. Oh yeah, when the doctor listened to his heart, he heard a little click inbetween beats. He said not to be worried, but he was going to keep an eye on it.
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. The nurses have very gently and lovingly cleaned up his mouth. It looks so much better. The blister on the side burst open, and they are taking wonderful care of it. He got dialysis again today, and tonight his creatinine is way down. I think it was down to 1.4, which is super. Now they are waiting for his kidneys to begin to function. Today when they put the cathater in, they only got a few CCs of urine out. Tomorrow they will have an ultrasound done to see if there is urine in the bladder.
His skin did look a lot redder today. Now there is a possibility that he could get a rash that WOULD be GVH. This is sorta a good news/bad news situation. 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. Lets 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. If G-d forbid any of those stinking cells managed to survive through the chemo, the new marrow's cells would recognize them as different, and attack them. So a little is good, and lot is not. :-)
Rabbi Ginsberg, the principal of the Torah Academy has graciously offered for the kids to attend school. Someone is going to pick them up tomorrow and drop them off after school. This will help to keep them occupied, and hopefully they won't fall behind on their studies. Goldie is excited because the girls in the 5th grade are supposed to be very nice. I just found out tonight that there are 11 boys in Shauly's class. This will be a dream come true for him, as back home there are only 3 boys! So I know he will be very happy about that. Chanie on the other hand doesn't want to go to school. She just wants to hang around with me. But she is going, whether she likes it or not. I am just worried that she will clam up, and not show the teachers how much she really knows.
Today I spent most of the day painting the outside of Yossi's room. Since there isn't really anything I can do for him, I feel that in some way, this is a help. I think that when he wakes up and sees what I did for him, he will be so happy. I painted this window with so much love. It's got the logo off his Giant's Champions cap he ordered off QVC. I am planning on adding a Dragon Ball-Z caricture, as soon as I figure out which one he likes more, Goku or Vegeta.
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. People have asked me how his spirit is. Yossi is not here physically. The doctors are keeping him so sedated, it's like a medically induced coma. Rationally, I understand that this is the best for him. He is sleeping, and allowing his body to heal itself without worrying about trying to be brave, or suffering, etc. But I feel so unconnected to him. I know in my heart he hears me. I know in my heart he feels the kisses. But it's not the same as when I hug him and he hugs me back. I haven't felt him hug me in days, and it hurts so much. I haven't heard him say "I love you" since last Thursday, and more than anything in the world I would love to hear those words. He's here, he's alive, but I MISS HIM. I WANT MY SWEET PRECIOUS SON BACK. I want to climb into his bed and cuddle while we watch TV shows. I want to hear him tell me the stories he loves to tell me. This is probably the hardest of all, not having his strengthn to help us through.
As I type through the tears, I beg G-d to grant him a complete and speedy recovery. I ask all of you again to please continue to pray for him, and do the good deeds that people all the world have been doing. It's working, but I want the miracle NOW! I want him to wake up in the morning completely fine, cured. Pray for Yosef Chaim ben Breindle Leah.
Yossi's white count is DOWN to 600 (.6). While we were disappointed, it is OK. It might mean that more of his white cells are where the trouble is, like in his mouth and heading for his skin. On a very sad note, we would like to extend our condolences to the Hirschorn family on the passing of their daughter Chaya Renana. Chaya Renana was only 12 1/2, and had suffered from a brain tumor for too long. Mommy is going to take a break for today's update, and hand the reins over to Papa.
Well, it has now been over 4 days since we have been able to communicate with Yossi. This is very painful, I miss him so much. Yossi is truly me (yes, when I am sad, I become British!) best friend after my wife. I miss spending time with him and talking to him adult to adult (of course, if anyone has to worry about not being the adult, it is me!). I can speak with him on any subject and have an intense, sophisticated dialog. Now, there is nothing we can really do physically for him, which is also difficult. We dont know how he feels, or what he feels, we can't draw comfort and strenght from him while he is like this. We can't see his awesome smile and I especially miss a little pet phrase he likes to say: "WHOO HOO". He uses that in so many contexts, he uses it to playfully poke fun at me or others in his family, and he uses it when he is truly happy. I love it when he utters those 2 words. Before he entered his current condition he was very very weak from the chemo and the other problems he was experiencing, but I was always able to coax one out of him, albeit a very weak one. I will be so happy when I hear him say that the first time!! I especially miss spending the night in the hospital with him. We have so much fun at night, playing Nintendo 64, watching sports or even the weather (Minneapolis has such great weather, I love it). We always play Madden 2001 on Nintendo 64. At first he would win every time, but he was so patient with me as I learned how to work the controls. Lately I have been able to beat him more and more often, although our last few games haven't been fair as he felt so bad. Even as late as last Wednesday he expressed a desire to play, but wasn't up to it, unfortunately.
None of us realized at the time how long they would keep Yossi asleep. Everything happened so fast we weren't able to think about what would happen after the surgery. So, for over 4 days he has just laid there, not moving or talking. I can only hope that this will prevent him from having any pain or remembering this awful time. I cant wait to tell him all about it when he wakes up! He has had so much pain and suffering these last 3 and a half years and it is so unfair to him.
However, things are definitely improving day by day. The big thing is still his kidneys. They are really not working yet, and we are very anxious for them to begin. There is supposedly a very very good chance they will begin working soon and he won't require dialysis for too long. However, I am very scared that he will have to have it for the rest of his life. I mean, he has gone through so much. When it is your child, you don't want them to have to go through anything unpleasant. This whole experience has been one of "settling" I just want him to have as normal a life as possible, since he has had to give up so much for so long. He just wants to be a normal kid and do normal kid things and not have to take pills and be restricted as to what he can do. Him and we have settled on so many points. Sure, as long as he is alive, it is worth it, and it is amazing how you can get used to things. His current condition doesn't even faze us anymore. I just want him to feel good and be able to do whatever he wants.
I truly cannot imagine life without him, as this little episode has given us a terrible glimpse as to what that would be like and it is so frightening.
Well, Yossman, Papa can't wait for you to wake up real soon and feel real well. I miss you a lot and I am looking forward to playing Madden with you again.
Keep praying for Yosef Chaim ben Breindle Leah.
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