Day +9
Grandma slept over with Yossi Saturday night and spent a good part of Sunday at the hospital, along with Grandpa and Grandma Jean. After they left Papa came to spend some time with Yossi. They played a lot of Nintendo 64 and had a great time. Yossi continues to feel really well. His mouth sores are just about gone and so are his skin blisters. Yossi Chaim got platelets today (thank you Jackie Kahn). His rash is going away and the Dr. said they may let him drink and/or eat in a day or two. This week coming up will be an important one as GvHD (Graft vs. Host Disease) can begin to emerge. Let's hope that if he gets it, it is very minor! Grandpa came back down to sleep with Yossi and wind up a pretty uneventful day!
Day +10
Grandpa stayed with Yossi Chaim in the morning. They watched some TV, played blackjack on his laptop, and went onto the internet. Yossi Chaim's face has been a little red since Sunday, and Dr. Yanovich thinks that it is the Vancomycin causing it.
Grandma came to stay with Yossi Chaim so that Mommy could finally make it to the dentist. They had a really fun time playing Nintendo.
Mommy arrived in the late afternoon. Yossi Chaim did his math homework, and watched some TV. One little bit of excitement... Yossi Chaim accidently pulled apart his IV at the clamp. Some of his lipids dripped all over before Mommy figured out how to shut it off. His nurse ended up having to change all his tubing.
Yossi Chaim got a Spinoza bear on Sunday, which came in very handy. During the night he was very uncomfortable from all the itching. I put some cream on, and then I put in a relaxation tape. It helped him to relax and fall back asleep.
Day +11
Yossi Chaim started off the day with a lowgrade fever. Dr. Yanovich changed his antibiotic, so that should take away that problem. He was also allowed to start back on solids. He had a little tiny bit of noodles. Yossi Chaim's tastebuds are dead right now, so he doesn't like eating. He tried some crackers but they tasted very bland.
Yossi has been having fun playing his Nintendo, watching movies, and doing school work. Overall, Yossi Chaim is doing great, thank G-d. (He's also got a lot of mail from a Yeshiva in New York. He really got a kick out of reading it.)
Day +12
Well Mommy got off to an awful start today! Yossi Chaim's medicine didn't start to go in until after 11:pm. That IV pump didn't stop beeping all night. I got some sleep, but it is so hard to be woken up so many times. Around 3:30 I just gave up. I had an idea that I was toying around with for a while. I wanted to write an article for a Jewish magazine. Well, seeing as I wasn't going to be getting any sleep, I wrote the article. (It is advice for people on how to treat others with our problem, and how others should deal with it.) I finally tried to go back to sleep close to 5. But Yossi Chaim needed some help with various things, and my poor sleep was interrupted a few more times. I woke up exhausted, but at least Yossi Chaim got a good nights sleep!
Yossi Chaim had a dandy time playing ball with the PT (physical therapist). He had a lot of visitors today... Rabbi Ron and his wife Sharon, Rabbi and Mrs. Lewin, and Robin Zeiger.
For quite a while, Yossi Chaim's white blood count has been staying at <0.1 !!! (That's as low as it could go!) On Sunday and Monday, it finally went up to 0.1 . The nurses always draw labs at midnight, and it was 0.3 . Dr. Yanovich wanted to see if it was going up, and they drew blood again at noon. This time it was 0.9 . From my understanding, when he hits 1.0, and stays there for 3 days, he can come home. So now we are talking about him possibly coming home NEXT WEEK!!! (Mommy went into panic mode!)
We are still trying to work out the many changes that his home coming will bring. Besides the actual cleaning (Pesach cleaning, just searching for dust and dirt instead of chometz), I have to worry about the 2 little ones. No more school, play dates, visitors, etc. They are going to go out of their minds. Then I have to worry who will stay with them, as Yossi Chaim will have to go to clinic EVERY day for a while after he comes home. YUCK. It's too much to think about right now.
Thank you all again for all your thoughts, prayers, good deeds, and more. We are sure that it helped Yosef Chaim ben Briendle Leah.
Day +13
Yossi Chaim had an awful night. He woke up around 3am, screaming and crying. He got morphine, but it made him throw up. Papa had spent the night with him, and he had to come home early. Mommy got to Yossi in the late morning. By then they had re-hooked him up to the PCA pump so that he wasn't in so much pain. He was actually in pretty good spirits.
In the afternoon, we found out why he had been hurting so much. (His back and legs were what was bothering him.) This morning his white count was 0.8 . By this afternoon, it was 2.3!!! He was thrilled to hear this! Dr. Yanovich is cutting his growth factor so that it won't cause his white count to skyrocket like that.
Yossi Chaim worked all afternoon on his social studies project. He typed the whole thing himself on his laptop. Then he redid his fort. It really looks awesome. He is waiting for it to dry so that he can paint the whole thing.
So he is doing great, eating a little (mac & cheese), and feeling pretty happy. The only problem that he has tonight is that his hands are peeling. It is starting at his finger tips, and slowly working it way down towards his wrists.
Day +14
Today was a really fun day for Yossi Chaim. He worked on his Fort Monroe project for school. He painted it, and painted the cannons and cannon balls that he made out of clay.
Then Bubby and Zaidy (Leah's mom and step-dad) arrived from Arizona. Yossi was very happy to see them. Mommy went home, as did Bubby. Zaidy spent the afternoon with Yossi Chaim. It was a quiet day. Papa came for Shabbos.
Day +15
Once again Papa stayed with Yossi over the Sabbath. Friday night was very uneventful. Yossi ate a little bit and the guys went to sleep fairly early. Saturday morning was a little different. First Yossi threw up, probably from some of the food he ate on Friday. Then he had a low fever, high blood pressure, and a fast pulse. They gave him medication to control it. Dr. Yanovich spoke to them about going home. If Yossi can continue to build up his eating without throwing up they will start him on oral medications and then he will be able to go home this week.
Papa and Yossi continued their weekly Battleship game and for the second straight week they picked almost identical configurations. But, this time Yossi won handily. Yossi had a visit from his grandmother's friend who is going to run a marathon in San Diego this summer for the Leukemia Society. Yossi is going to be her patient partner. At night they played some more Nintendo and then Papa went home.
After Shabbos was over, Bubby came down to sleep with Yossi Chaim.
Day +16
Bubby stayed with Yossi Chaim during the day. They had a great time. Bubby had brought Yossi Chaim a GI Joe doll the size of a barbie. They played with it for a long time. Yossi also made some clothes for it out of the hospital slippers.
In the afternoon, Yossi took a nap. Dr. Yanovich is cutting back on some of the medicines that he takes, as well as switching over to pills. This is all in anticipation of Yossi Chaim's HOME COMING!!! (Still don't know when!)
Day +17
Well, it really and truly looks like he will be coming home this week. It could be as early as Wednesday... (Mommy asked for it to be on Sunday to give everyone enough time to clean.)
This morning Yossi Chaim threw up. He also was a little warm, although he wasn't running a fever. He is also STARVING... (WE ALL HATE PREDNISONE!!!) There is nothing that he wants to eat here, and he can't have the things he does want. (That is a quote from him!) Boy, doesn't this sound familiar???? Been there, done that, with his Pancreatitis... YUCK!
Well, mommy has fallen behind with letting you know the counts, so I will update them ASAP. Today his white count was 4.8. His Platelets have been holding their own, and he might not even need any more transfusions for a while.
He will probably need blood tomorrow, because he was border-line. Yossi Chaim also accidently pulled his line apart, and he got a blood return. BUT... Dr. Paley knew just what to do. He put the ends back together, and called his nurse. (He knew that this was ok, because the 2 ends did NOT touch the ground.)
Yossi Chaim was miserable all afternoon, complaining about everything. Finally he ate a tuna sandwich, and seemed happy. We watched the Olympics. Bubby came down to bring Yossi Chaim eggs and french fries. He also got to take his Cyclosporan orally tonight. (It's a medicine that is mixed into olive oil that WE get to disguise with chocolate milk. Rumor has it that it tastes like gasoline.)
Around 10:30 pm Yossi Chaim was "freezing" and shivering. Uh-oh, been there and done that too. (Boy, this day is like de-ja-vu!) Trisha had taken his temperature and told me that it was 99.9. Well, when I touched him, I knew that it wasn't. I took it, and it was 101.4. BAD NEWS!
I told Trisha that it was on it's way up, and we gave him Tylenol and water. At that point he was up to 103.4. All the poor kid wanted to do was sleep, and we kept poking and prodding him. Well, an hour after he got the last Tylenol down, EVERYTHING he ate this evening came up!!! So, with that, I will wish you all a GOOD NIGHT! (Seeing as I am not gettting one. Yossi Chaim did ask me to update his site tonight. He also said "I guess this pushes my homecoming back!")
Don't forget to pray for Yosef Chaim ben Briendle Leah.
Day +18
Yossi Chaim and Mommy slept in. Then Yossi Chaim got Benadryl (to prevent a reaction to his antibiotic). So he also slept again in the morning. Yossi had a quiet day.
Mommy went home in the afternoon. Tanya, the artlady came, and Yossi made a paper mache mask. In the evening Bubby came to visit with him. Then Mommy came to spend the night. (Yossi Chaim slept through all the beeping. Mommy woke up a dozen times!)
Day +19
Bubby came in the morning. They played guns, GI Joe, and other games. Rabbi and Mrs. Ron came to visit, as did Robin Zeiger. In the afternoon, Grandpa stopped by, and Bubby came back to spend the night.
It looks like Yossi Chaim will be coming home either Friday or Monday.
Day +20
Yossi Chaim had an interesting day. He had a small nose bleed, and then threw up (he swallowed a blood clot). In the afternoon, he was in a much better mood. He painted his mask... half black and green (Jets colors) and half red and blue(Giants colors). Then he drew 2 helmets, and glued them on. Hey, give this kid an A for Art!!! (Actually, he got his report card from school, and he accidently got a grade in Music. I plan to take it off, and give him a grade for Art.)
Yossi Chaim has begun his project for the science fair. With Dr. Yanovich's OK, a nurse drew some blood from Yossi Chaim, and some blood from mommy's ARM!!! (Didn't hurt!) (He had 2 nurses in doing it at the same time.) Then, he compared to see whose blood would clot faster. OK folks, the bets are on... who do you think... Mommy with a normal level of platelets, or Yossi Chaim who was low??? Answer to appear at the bottom!
Yossi Chaim summed up the day by saying that it was a good day!
Day +21
Bubby slept over, but had to leave for the airport at 4am. Yossi was up when she left, and he called grandma and grandpa, cuz he knew that they were up then. Mommy finally arrived close to 8:30 (which is EARLY for mommy!) BUT... mommy had to leave at 9:30 to go pick up the counselor from Chai Lifeline... RIVKAH!!!
Rivkah and Yossi played guns, and other exciting stuff. Mommy was bored, so she went home to cook Yossi Chaim his chicken for Shabbos. Rivkah and Yossi arrested Dwight... He "handcuffed" him with tape, and locked him in a room. (They were waiting for him to post bail! [Another nurse had to sign and date something!]) Rivkah says..."The funniest part was watching him get all ready for this... He had his Game-Boy for the drug-testing (BTW-Dwight tested postitive for marijuana and alcohol [WHO TAUGHT THIS STUFF TO MY SON????????]... using the Yossi method [read Game-Boy].) They each had a holster, he made badges for both of them... obiviously, he had this whole thing all thought out. Needless to say, they had a blast.
Papa came to spend Shabbos, and he will update it when he has a chance. (How much do you want to bet that they read, played a little, and went to bed early????)
Day +22
After Shabbos, Grandma, Grandpa, and Rivkah went down to see Yossi Chaim. (Grandma had someone call the hospital, and she was told that he was making his own platelets!) Rivkah gave him all the presents she brought him from Chai Lifeline. He was very happy with the stuff. Grandma spent the night.
The big news is *drum roll please*...
Day +25
Yossi Chaim came home this past Sunday as planned. He left the hospital around 2 p.m. Mommy drove him to Grandma and Grandpa's house. (Papa had brought his computer over the night before.) While he was settling in, Papa went to go get his prescriptions. We also brought all the kids over, and they said "hi" to him from the window. They were all so happy!
Yossi Chaim went down to clinic on Monday, and since his counts are doing so well, thank G-d, he doesn't have to come on Tuesdays or Thursdays. He will have home nursing come on those days.
Now is the time for us to be extra vigilant with watching out for infection. Even though Yossi Chaim's counts are up, his white blood cells are suppressed, and won't/can't do their job (to fight against infection, bacteria, etc.). It is truly amazing how our bodies work. For instance, if a child has been vaccinated with the live polio vaccine our children could carry the live virus home and transmit it to Yossi Chaim (G-d forbid). He no longer has an immune system and way down the line he is going to need to get his shots again. Also, children tend to have more colds than adults. Hence, we are not allowing children to visit with Yossi Chaim. It just isn't worth the risk.
My in-laws have already finished having their house cleaned. We are going to have ours finished this weekend. (Yossi will be allowed to return to our house when all the kids are in school.) The main thing that we are trying to rid our houses of is dust. Dust can really harm Yossi Chaim, as can dirt and bacteria from live plants. The walls and floors needed to be scrubbed, carpets cleaned, our duct-system cleaned; as well as pulling down all the pictures and dusting the bookcases. The refrigerator had to be scrubbed, as well as under and behind it. (He is not allowed to eat food that is more than 48 hours old! Really it's better to only be 24 hours old!) He still needs to take a shower every day, and his bedding should be changed every other day. (The bathroom has to be cleaned everyday with a bleach/water solution.) There is still more, but this is just a small sampling of what we need to do!!!
Once again, we would like to thank everyone for the love and support you have given us during this difficult time.
Day +31
OK, I know that we haven't been keeping up the updates... sorry. :(
Thank G-d, Yossi Chaim continues to do well. He is falling into a routine of going to clinic on Monday, Wednesday, and Friday, and maybe Sunday. He has a home health nurse that comes on Tuesday, Thursday, and Saturday. So far, his Hemoglobin has been holding it's own and his Platelets have been slowly but steadily increasing, today they are 152,000... LOW NORMAL!!!
Yossi Chaim enjoys living with Grandma and Grandpa. But he misses his home and family very much. This past Shabbos, Mommy brought the other kids over to see him. Chanie cried and cried, Because she wanted to give Yossi Chaim a "huggie" (exactly what Dr. Yanovich doesn't want her to do!). We let the kids see him through the front window because the two little ones had runny noses.
This week, Yossi Chaim should be getting his own telephone line and therefore will have access to the Internet! We are also trying to get him a Via 8x8 Telephone/video camera. Once he gets this, RTA is going to put in a telephone line, and he will be able to "go to school" every day!!! (Hurray for modern technology!)
Day +34
Nothing much is happening. Yossi Chaim continues to go to clinic 3 or 4 days a week. He has home-health coming the other days.
On Tuesday, I took him to see the movie "The Borrowers". He absolutely loved it. (I found it very slow. In our paper here, it got 1 1/2 stars. I think they were being very generous!) Well, I am happy that he liked it, and he got to get out. (We went in the middle of the day, and the theater was almost empty!)
Yesterday, while Yossi Chaim was at clinic, his red blood count was low. Instead of giving him blood, they are going to try to give him a drug that will help his body to make its own red blood cells. He will get this 3 days a week.
Yossi was given the green light to eat some of his favorite foods, pizza, chips, and fish sticks. So far so good, no adverse reaction! HURRAY FOR YOSSI CHAIM!!!
Please continue to pray for his good health!
Older updates...
Oct. updates
Nov. updates
Dec. updates
Jan. updates
(second half) Jan. updates
The testing began at exactly 3:00pm. By 3:07, Yossi tube was clotted. Mommy's clotted at 3:12. OK Doctor friends.... HOW COME HIS CLOTTED FASTER???