Jan. 7, 1998
Wow, this is all happening so quickly now. I found out yesterday that this donor is most likely going to get approval. The date that is most likely going to work, is Jan. 21. This means that Yossi Chaim needs to be admitted either Sunday, Jan. 11 or Monday, Jan. 12. Oh well, so much for DisneyWorld. At first, when he found out, he was very upset. Now Yossi Chaim is being very mature about it, and saying that he just wants to get it over with. Tomorrow we are going to meet with the transplant team again. From everything that I have learned, this is what I think is going to happen: First, he has to be in the hospital for 9 or 10 days before the transplant. He will need to have surgery to put another line in. (The Port-a-Cath that he has now only gives access to one line at a time, and they will need access to two.) Then, he will need to have radiation and chemo. We are not sure right now how much, because it all depends on the protocol that he gets. (We would like him to have the one with "T-cell depeletion", but it is a random study, and it is computer generated.) So like I said, I will know more tomorrow (which study he is on).
The day that he actually gets the marrow is "day 0". Everything before that is "day -10", "day -5", ect., and after the transplant it's "day +8", "day +100", etc. So next week, I will not only include the date, but the day also.
As far as Yossi Chaim's health, he feels great. He went to school for one period on Monday, and he went for two periods yesterday. He gave an oral book report, and displayed the diarama that he made. He is planning on coming to school again on Thursday, but just for one or two periods. I pulled his bike down from the attic, and he had a friend come over on Monday. He told me that he feels like a normal kid again. Today, after school, he is having another friend come over.
I can't begin to tell you all how much your concern and support have helped me. Please continue to keep up all the good deeds, prayers, and charity. Important note: if you are planning on fasting tomorrow, Jan 8th, in honor of the Tenth of Tevet, please have in mind that it is also for Yosef Chaim ben Briendle Leah. I would also appreciate it if everyone would fast on the day that he actually gets the bone marrow. Since I don't know for sure when that will be, I will let you know later, as well as give more details for the fast.
Jan. 11, 1998
Well, last Thursday was the WILDEST ride on this cancer rollercoaster yet! As I told you, we were told last Tuesday that he couldn't go to Disney World because he was having his transplant during the 3rd week of Jan. So, I cancelled all the Disney plans and he accepted the fact that he wasn't going. He was actually looking forward to getting the transplant over with!
Then, Thursday at 1:00, I got paged from the nurse coordinator that he CAN go to Disney World. It seemed that the donor center wasn't prepared to do the bone marrow harvest the 3rd week of January. Soooo... I called Chai Lifeline back and told them that Yossi could go. I called RTA (Yossi Chaim's school), and told them not to run the letter he wrote. I ran home to get the forms for the doctor to fill out so that he could go. When I got to the hospital, I had to go to the doctors to give them the form. Then I went upstairs to the transplant center.
The first question Yossi Chaim asks is "How come I can't have my transplant next week?" The transplant coordinator had just found out that he COULD have it next week after all! As soon as the meeting was over, I had to call Chai Lifeline and tell them NO, HE'S NOT GOING. Then I had to call RTA and tell them to run the original letter he sent, not the update. WHEW! What a day!!!
SOOOOOoooooo.... the story is, he goes in on Monday night, or Tuesday morning, depending on which arm of the protocol we get. I am hoping to get the T-cell depletion. (They pull all the T-cells out of the donor marrow in hopes that he won't get GvHD.) We will find this out Monday afternoon.
We think that the transplant will take place on Jan 23rd, as the harvest will take place the day before. Since Jan 23 is a Friday, I don't know if we are allowed to fast on that day. I will keep you all informed, as you already know!
Just keep on praying for Yosef Chaim ben Briendle Leah!
Jan. 13, 1998
We arrived at MCV yesterday around 2:00, with tons of stuff. (I let Yossi Chaim pack his own bags, hence we had 3 bags: some pj's, a robe, T-shirts, sweatpants, undies, and tons of toys!!!) We were pleasantly surprised to find that he has a large room. It is really a double room, with 2 beds in it; one for him and one for me or whoever sleeps over. He also has a table and a really nice, comfortable chair, a recliner, and a bookcase! Yossi Chaim immediately called for his Nintendo, and they brought him a Sega game.
Yesterday was Yossi Chaim's free day. He was allowed to eat whatever he wanted, and basically do whatever he wanted. We had some glitches today. The first was that his port-a-cath decided that it didn't want to work. So, they tried to access him several times, and finally just gave up. If they can't get it to work tomorrow, then they will just stick him in the arm. On Thursday, the radiation people are going to put in another line. At first they wanted to do it while he was awake, but he told them that he wants to be asleep for it! I was very proud of him, the way he stood up for what he wanted. (At first he started to sulk, but I told him, "Now is the time to tell them what you want." I don't care if I come across as a parent who panders to their child's every wish. He is the one that has to go through the procedure, so he can choose how he wants it done!)
The second problem was that the hospital didn't like the fact that I placed an order for Yossi Chaim's milk products, and a few other items that we can't get here. Now it seems that they will only pay for his milk, cheese, and grapejuice. Oh boy, I am not through with them yet! How dare they???? The last two times he was in the hospital I did all the cooking for him. When his white blood count drops below a thousand next week, I won't be allowed to cook for him! What are they going to feed him all the time, cheese? Idiots! I was so mad, I almost couldn't see straight. BTW, this is not the people on the transplant team, this is the hospital's main food service people. The dieticians have gone out of their way to try and provide Yossi Chaim food that not only meets our strict requirements, but that he also likes.
The phone here stinks. Not all the numbers work, so that makes it really hard when you try to call someone. We finally got a new one late tonight, but the "0" button doesn't work very well. So I will be off to Target tomorrow to get a new one!
The final thing that happened that was a major bummer to Yossi Chaim was that the brand new video I bought him DIDN'T WORK!!!!! I bought him the Star War's trilogy, the special edition, and the first one had a blue screen for the entire video. Luckily, the hospital had not one, but two copies of Star Wars. So in the end we were able to watch it. But guess who is also going to Toys R Us for an exchange?
If you would like to send Yossi Chaim a card, here is his address:
Yossi Chaim Paley
c/o MCV Hospital
North Hospital, Bone Marrow Unit, Room 17
1300 East Marshall Street
Richmond, VA 23298
We have also asked people to fast for him on Jan 23rd, from sunrise to approximately 12:30 that day. This includes both eating and drinking. You can also give extra charity on this day, and pray for him as well…
Yosef Chaim ben Briendle Leah. Thank you in advance for all your support and help!
Jan 14, 1998
Today was an awful day for Yossi Chaim. They told us that he would go down to radiation around 6, 6:30. I thought that they meant "hospital time" (always late!). Someone came for him around 9. When we got down there, it turns out they had planned on having him here at that time. Now, for you lucky people who don't know what radiation is, I will explain it to you. (I honestly believe that it is a form of medieval torture! Last week he had to lie on a beanbag that had air in it. Then they suck all the air out of the bag, to form your shape. (You are lying on your side.) The bag becomes rock hard, with little folds under you. Well, today, Yossi Chaim had to lay on this uncomfortable bag, and hold perfectly still. Then the technicians take a x-ray to make sure you are lined up perfectly. (They put these "blocks" there to protect your lungs and kidneys.) You have to lie perfectly still while they develop this, and then compare the 2 x-rays. They had to take at least 3 x-rays to make sure he was perfect. This took about half an hour. When Yossi Chaim realized that he didn't even start the radiation, he started to sob that his legs were getting cramped. The medication that they gave him at 5 wore off, and he was no longer sleepy. So they called his nurse, and she brought him down some more. I asked her to give him some Benadryl too, to help make him sleepy. They had a bunch of other patients to take, so Yossi had to sit and wait and wait and wait. Finally, close to 12, it was his turn. We finished at 12:45, and they needed to give him some other radiation. He burst into tears at this point, and said that he was hungry!!! At first they were going to assemble a whole team so that they could give him this radiation real fast. Then the decided to wait until Thursday and Friday to give it to him. He gets into his wheelchair, and promptly throws up!!!!!!! When we got him back to his room his port-a-cath still didn't work, so that he needed to get an IV. My friend arrived to stay with him for a while and I left.
I headed for Toys R Us to replace his video. While I was there I bought him a bunch of presents to give him after each session of radiation. It was quite fun walking around the store and getting him things that I KNEW he would really want!
When I got home, I had to deal really quickly with his laundry and the woman from the hospital about his food. At least THIS was good news. We went through the list of what I ordered, and they bought him most of it. (They didn't get him the soup croutons, gum, candy, and pizza. They want to use up what they have first. AND…. It seems that they did order the food that he wanted way back in October. So now he can get some of those meals.)
I cooked him the stuff that he wanted, and came back close to 7. He was fast asleep when I got here, so I wrapped up all his presents. I set them up on top of his bookcase, and when he woke up, I showed them all to him. Plus, he got a big package from New York. He opened that first, and was SO happy to see that he got a whole collection of Rabbi Goldstein tapes from my friend in New York! Guess what he is taking down to radiation to listen to tomorrow? Then I put all the presents on his bed, and he picked the two with Giants wrapping paper. (I knew that he would!) He got a Princess Leia action figure (from Star Wars), and a Star Wars hand held game that he really wanted. (I had bought it for a birthday present for his friend Yonaton, and he really wanted it.) He was so excited.
Then he started to get nauseous, and his jaw hurt big time. We got him to take some medication, and eat some dinner. This is not as short as it seems, cuz by the time this happen, it was after 11! I am ashamed to admit this, but we went to bed at midnight. (It seems that most people on the transplant unit go to bed at 12, because this is the final check on counts and stuff.) His night nurse was really nice, and didn't plan on waking him until 6 for his medicine. (They usually get woken at 4 for vitals.) So this was one of the longest days ever!
Keep praying for Yosef Chaim ben Briendle Leah, please.
Jan. 15, 1998
As impossible as it seems, today was actually worse than yesterday, at least it started bad. Yossi Chaim was taken down to radiation at 7:00 am. He did great, and we got back to the room around 9:00. Then it all started: He kept vomiting, and he couldn't take any medication because his port was still not working. He wasn't allowed to drink, because he was scheduled for surgery at 11:00. We got him to take an Ativan (anti-nausea medicine), but he threw it back up! He took a shower and his nurse tried to access his port again, with no luck. The surgery was a little longer because they took his old port out and put his new Hickman line in. (He kept the port as a souvenir of this whole experience.) When we got back to the room after surgery it was after 2:00 pm. I was famished, becasue I had been fasting, just like he was (although mine was on purpose). He thought that he was going to throw up again, so he didn't want to eat. I got food for me, and then the floor in the kitchen was going to be washed. Yossi Chaim decided that he was hungry, but I couldn't get into the kitchen while it was being washed. When I finished breakfast, it was time to go down to radiation again. Poor little guy! (One important side note- the staff down at radiation is wonderful. They have been so kind and nice to Yossi Chaim. Thank you Dr. Cardinale,Tim, Tony, Mary Beth, Judy, Judy, Kristen,Dineille , and everyone else. You all are great!)
He did well during the second round of radiation, becasue his nurse came down and gave him Morphine. (When he was in the PACU after his surgery, he heard a nurse tell the woman to push the button if she had any pain. Yossi Chaim started hollering that he wanted Morphine, too.) He was so relaxed. Half way through the treatment, he started to cry that he missed "the kids" (his brother and sisters), and he really wanted to see them. Unfortunately, he won't be able to see them for a while. Then he started to ask when Papa was going to come. Just as he was finishing up, Papa arrived. Yossi was SO HAPPY to hear him, and then see him. Then Yossi had to go have another radiation treatment. He did really well until the last part. He started throwing up, and his neck hurt. Not only was he a real trooper, but he told them to go ahead and do the last one so that tomorrow's treatment would be shorter. He was very happy to get 3 new presents for what he went through today. He got some anti-nausea medicine and still threw up the little bit of food and water he ate. We are talking of not eating until after 6:00 pm. Thankfully, he fell asleep. Michoel and I met with the doctor about the protocol and some questions we have. When he woke up his buddy from school came to visit him. Yossi's face lit up when he saw Yonatan. Then he started to feel really sick, and guess what???? He threw up again. BUT, he did feel a lot better and was able to eat the yummy dinner Joan sent for him.
Well, here it is midnight, and we are still up. I am going to end off with saying that although today was hard, it had a good ending. Yossi is feeling really good right now. He even played chess with his nurse. (I will have to tell you about his nurses. They are all really nice, and he is very comfortable here.)
We are approaching the big day... Keep praying for Yosef Chaim ben Briendle Leah!
Jan. 18, 1998
This past Friday, (Day -7) was a wonderful day for Yossi Chaim. He went down to radiation, and Thank G-d he had no problems. He got it over with, and came back to his room all smiles. He was able to eat a little. They took him back down to radiation around 12, and he was so excited. (This was his last one.) I brought his last present with us. When we got down there, we found out he had another one that I didn't know about. (Now I need to find him a Luke Skywalker in a Stroomtrooper snowsuit.) Everyone down there was so wonderful again. Yossi Chaim opened his last present so that everyone could see what he got (a star wars belt). Tony drew another picture on Yossi Chaim's hand to go with the one he drew the day before, so now he has a rose on one hand and a Jets helmet on the other. Tony also let Yossi Chaim pick out a picture that he "doodled" in his spare time. He is a great artist. It looks like it belongs on the back of a Readers Digest! Dr. Cardinale gave Yossi Chaim an x-ray of his chest, and promised to come visit him this week. They also want to keep up with his progress, so if you are reading this-"Hi Guys!!! We miss you!"
I went home when Yossi Chaim got up from radiation, and Michoel came here to spend Shabbos. Yossi Chaim went to sleep fairly early, and slept for 14 hours. He also took a nice nap Shabbos afternoon. Michoel came home after Shabbos, and Ilene (Yossi's grandmother) spent the night with him. Everything seemed to be going ok until he got a very stiff neck. They thought that is was a reaction to one of the medications. Avrummie, Yossi's friend all the way from preschool came to visit him. Yossi Chaim was so happy. They played Sega, and did I don't know what else!
Soon after Avrummie left, Yossi Chaim started getting another stiff neck. The nurse gave him some Benadryl. Dr. Yanavitch came in to check him. (I really like him. And for those of you who know my thoughts on doctors, that is a really big compliment!) It could be several things, like his electrolytes are low, or the fact that he is getting so many medicines. Hopefully, it won't happen again.
Yossi Chaim got chemo today, Ara-C, and he will get it 5 more times. Yossi Chaim is of very good spirits right now. He has gotten a little upset about his neck getting stiff, but overall he is doing a fantastic job! I am very proud of him!
Once again, we are asking for everyone who is able to fast for Yossi Chaim on Friday, Jan. 23. His transplant will take place Eruv Shabbos (the time before Shabbat), we can only fast for half a day. (This fast will begin at sunrise, and end at Jewish noon. There is no eating and no drinking, not even water.) Here in Richmond, the fast will end at 12:22 PM. If you are not here in Richmond, you can end it around 12:30 or 12:40, depending on where you are. Don't forget to pray, give extra charity, and do good deeds in the merit of Yosef Chaim ben Briendle Leah! Thank you.
Jan. 19, 1998
Today was a bad day for Yossi, but just because he was feeling really down. I came back to stay with him around noon, and brought Goldie to see him. He was very weepy. He was happy to see her, but also crying a lot. I tried to distract him, but he was feeling down BIG TIME! The social worker talked to him for a while, and later in the afternoon, his friend Menachem and his Rebbe (teacher) came to see him. When Rabbi Sherman asked him how he was, he answered him in a really small voice, "Not too good." Mr. Scott, his homebound teacher came to see him also. Yossi Chaim was still feeling sad until Jean, the social worker came to visit. She brought Yossi Chaim some "silly string" (string in a can that you squirt at people). Yossi squirted it at his nurse, and Dr. Yanavitch, and anyone else who happen to come into the room. Meg, the child-life therapist also came. Yossi Chaim, Menachem and Meg made a big poster calendar of his stay here. By this point Yossi Chaim was doing just great. He was laughing and having fun. It is so unbelievable what a difference a friend could make!
They started Yossi Chaim on TPN tonight. This is suppose to give him all the nutrition he needs, but he was starving! He ate so much, and was still complaining that he was hungry. He dressing was also itching him.
Michoel came to see Yossi Chaim just before he went to sleep. Yossi really looks forward to seeing him.
So, even though nothing really happened, it was just a "down/bad" day for him.
Please keep praying for Yosef Chaim ben Briendle Leah.
Jan. 20, 1998
Well today was a real "eye opening" experience. Yossi and I were up a lot during the night. I thought that he was going to be miserable again today. Yossi Chaim told me that he was going to have a good day today. In fact, the first words out of his mouth were "I'm sorry!" He was in such a good mood during the early morning. Then he got a better stationary bike, and was using it. He was trying to go as fast as possible, and slipped off the seat and got knocked in the leg with a pedal. That put him in a horrid mood. He was suddenly all upset, and weepy and crying. He has got a VERY bad case of cabin fever. He wants some new toys, especially some legos, which I stupidly did not bring him (thinking that they were too little). He is crying for some new Star Wars action figures and NEW things in general. And little ole me stuck here with no car!
I happen to ask the nurse if the chemo could be causing the moodiness, and he said maybe. Then he said that it might be the DECADRON!!! Oh how I wished that I had paid better attention when I was reading his chart last night. (Yes folks, the kind doctor and nurses LET me read his chart! That was a shocker, looking back at his other hospitalizations. I told you that these are a really great bunch of people. [I still love the nurses down on 7 west!] They are very kind and patient.) Anyway, back to his chart, I just skimmed it last night to see the notes the nurses wrote. At least now I understand why he is so sad. (It's just the medicine.)
Late afternoons seem to be Yossi Chaim's hard times. He has been getting really moody, and crying a lot. Today he was screaming for his Nintendo. (I do mean SCREAMING!) So I got on the phone, and arranged for Yossi Chaim to have not one, but 2 visitors. Before his friends arrived, Yossi Chaim was given tons of medical supplies (tubing, saline bags, syringes, clamps, tape, gauze, scissors, and alcohol pads). He used all his stuff to hook me up to not one but TWO IVs. (OK, the one smart thing they did was say no to the needles. But his nurse did walk in with a giant syringe with a tremendous needle. I nearly freaked, and said, "That isn't for me, is it?????" Don't worry, it was for Yossi Chaim.) He had a blast with it. I had a leak in one line, and got covered with saline. He then figured out how to hook up the second one by taping the line a little lower than the clamp, thus allowing the saline to flow out like make believe blood.
I really think the highlight of Yossi Chaim's day was when his friends came to visit. He planned Game Boy with Yair, and then subjected Yonatan to the same treatment that I had.
Some people have been wondering about the schedule of who will be with Yossi Chaim when. It's really not that complicated, except that we are not following it this week. I will be with Yossi Monday through Friday, just going home on Wednesday's afternoons to be with the kids. This will enable me to be with the little kids all weekend. Michoel will be with Yossi Chaim on Friday. My mother-in-law will sleep over Saturday night, and my father-in-law will stay here Sunday night.
Please keep praying for Yosef Chaim ben Briendle Leah.
Jan. 21, 1998
Yossi Chaim had a very hard night. He woke up 3 times to go to the bathroom. One time he was in severe pain. (This is very normal. They expect it to happen. That is why he has a commode right next to his bed.) When he woke up he decided that he didn't want to eat anymore. (If you don't eat, you won't have diarrhea.) He was in a pretty good mood for most of the morning, but then the boredom struck. He did have a bunch of visitors. Rabbi Ron came to see him and they played action figures together. (He was also visited by the school teacher, the physical therapist, and a volunteer who could play cards with him.) Yesterday when Yossi Chaim was pitching a fit about the Nintendo, Dr. Yanovich promised him that he would have one the next day. So after Rabbi Ron left, Yossi first started his song and dance about his food. ("I'm so hungry, and they won't let me it, it's not fair, I want to go home, there's nothing to do, I don't like the Hickman, I'm so bored, I WANT NINTENDO!"… You get the idea.) Well, his nurse told him that they had the Nintendo 64 for him. Dr. Yanovich went out last night and BOUGHT it for him, as well as an extra game pad, and 4 new games (all the ones that Yossi Chaim wanted). They got it hooked up for him, and he was in seventh heaven. Our friend Chaim came down to stay with Yossi Chaim while I went home to be with my "other ones". I did make two stops on the way home. One at Kay Bee Toys trying to find his Luke Skywalker in a Stromtrooper disguise, and some other Star Wars action figures. (PLEASE- If anyone can find this, PLEASE buy it for him and send it to him! He wants one so bad!) The other was to the grocery store- I wanted a real dinner. (This was such a treat for me - fresh chicken, roast potatoes, and corn on real dishes with a glass! Wow, it's unbelievable what you take for granted! Oh, and SELTZER! That was a real treat for me. I hate water and soda, my only choices at MCV.) During dinner, Yossi Chaim called me a half dozen times. Dr. Yanovich told him that he could eat in moderation, because he didn't have diarrhea at all today. He was so hungry, and didn't like what I had for him. So I made him one of his favorites: macaroni and cheese. Michoel gave me a treat tonight and he went to sleep there. When he got down there Yossi Chaim was already asleep. Oh well.
So many people have asked what they could do for us. Seeing as Yossi Chaim is so bored, if you really want to do something for him, send him some e-mail at firstname.lastname@example.org, or send him small things to keep him entertained. If you are so inclined, my other kids are also feeling left out, and could use some attention. Anyone who would like to spend some time with them should contact me or my mother-in-law to arrange it.
We are heading for the big day. Although Yossi Chaim is having a hard time, he is still very excited about the transplant. He is calling it "His new life". This morning he drew a picture of himself receiving the new bone marrow. (For those of you who don't know, this is very anti-climactical… It's a bag of marrow that drips in just like a regular blood transfusion.)
Somewhere in this world is a very generous man who is going to give my son a second chance at life. G-d bless him where ever he may be. In our teachings, we learn that if you save the life of one person, G-d considers it as if you've saved the whole world. You also gain entrance into the World to Come. Thank you, who ever you are. You are truly a very special person.
Please keep praying for Yosef Chaim ben Briendle Leah. Don't forget to fast (or give to charity the money you spend on food) this Friday.
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