Day +37
Ok, Mommy posted his update too soon last week. Remember when I said that he ate his favorite foods, and it was fine? Weeeeeellll, the next morning, Yossi Chaim really paid the price. He was in terrible pain. In the end, Dr. Yanovich said that he shouldn't eat any more fish sticks.
Other than that, Yossi Chaim has been doing great. His hands are getting better, and it looks like his hair is starting to grow back.
Here's a funny one: Yossi Chaim got his own phone line so that he can access the internet. Well, he was getting A LOT of phone calls late at night... It turns out that the previous owner was an ESCORT service. Yes, you read that right. Tomorrow, Grandma is going to get his number changed.
Yossi enjoys living with Grandma and Grandpa, but he misses his home very much. He really wants to play with his brother and sisters. He also wants to come home, and spend some time there.
Several internet friends have had some relapses... Please pray for Chaya Mintza Kaila bas Miriam, Baruch Yosef ben Adina Batya, and Yoel ben Zelda Yittle. Thank you for your help in advance. And don't forget Yosef Chaim ben Briendle Leah!
Day +40
Yossi Chaim continues to make wonderful progress. Right now we have two major concerns- keeping him away from germs and stopping him from eating foods that aren't good for his stomach! The first job is easier, as it just means "no kids" (including his own siblings [Chanie has had a runny nose for a long time now, just found out she has a throat infection, not strep though!]). His friends are welcome to call him on his own line, or email him.
The phone story has gotten even funnier. On Monday, Grandma called the phone company, and explained that his new phone number used to belong to an escort service. She asked for a new number, and told the woman at least 5 times, "Don't give the new number!" Well, last night at 2am, grandma was woken up by his phone ringing. (When he had his first number, they turned off the ringer at night.) She tried his old number, and it gave out his NEW number!!! Guess who was back on the phone with the phone company today??? Guess who has another new number???
Mommy is thinking that maybe she will let Yossi Chaim come home next week to make hamantashen (special cookies in the shape of a triangle and filled with jelly) in honor of Purim. We are also thinking that he will come home for Purim, if all the other kids are feeling fine!
Day +44
Alright! Yossi Chaim finally got the phone situation straightened out, with a lot of help from Grandma! So he is now the proud owner of his own phone line. He has been reading all his email. It takes him a very long time to type back, so most of the time he just reads it.
This past Wednesday, Yossi Chaim's Creat. count was up way too high. (This has something to do with the kidneys and what they are excreting.) Yossi Chaim had to go back to clinic on Thursday, and he was given instructions to drink A LOT! When he went back, his count was back to normal. He is doing so well that Dr. Yanovich told him that he doesn't need the home-nurse this weekend. That means that Dr. Paley had to flush his lines himself!
Yossi Chaim had a nice quiet Shabbos. This morning, Yossi Chaim threw up once. He is doing fine now, and he made some hamantashen with grandma. Papa went over to tape Yossi Chaim's oral report for school and especially to spend time with him.
Every Tuesday, at 1:00pm EST, people all over the world are asked to say prayers for children with cancer and other life-threatening illnesses. The prayers are Psalms 20 and 130. We would appreciate it if you could think of Yosef Chaim ben Breindle Leah, Chaya Mintza Kaila bas Miriam, Yoel ben Zelda Yittel, and Baruch Yosef ben Adina Batya, in addition to any other children who need the prayers. Thank you!
Day +49
Yesterday was our holiday of Purim. On Tuesday, Yossi Chaim came home to bake hamantashen (the triangular cookies) with mommy. Here's the recipe. Mommy and Yossi Chaim had a lot of fun. The first batch, Yossi Chaim did almost all the work. Mommy ended up doing most of the work for the second batch. But the cookies came out yummy in the end.
Mommy and Yossi took the cookies with them down to clinic on Wednesday. Yossi gave a plate to Dr. Dunn, his friends at radiation, and Dr. Yanovich's staff. Yossi Chaim got a lot of compliments.
On Thursday, Yossi got a bunch of nice shalach manos (baskets of food) from some of his friends. It made him very happy. Then, Dr. Ben Ezra came to read Megillah (the scroll of Esther) to him since he couldn't go to shul to hear it.
Papa picked Yossi Chaim up on his way home from work. Yossi was dressed as Darth Vader. He came home, and EVERYONE was thrilled to see him. We had a pleasant dinner. I just had to be extra careful in the way I cook, and as far as serving.
Keep up the prayers for him!
Day +59
Sorry folks... it's been a while since the last update.
Last Wednesday, March 18, Yossi Chaim had a spinal tap done. The reason that the doctors wanted to do this was that he had had white cells in his spinal fluid prior to his transplant. So this was just a precautionary measure. Not only did they check his fluid (which came back with just 3 cells per whatever, which is ok), but they gave him chemo in his back. He will get this a total of 4 to 6 times... once every 4 weeks. (Yossi Chaim was a real champ when they did the tap. They cleaned his back, put him to sleep, 'tapped' his back, and woke him up! The whole thing took about 5 mins!!!)
Yossi Chaim has been feeling pretty good. Thank you to the Binstocks, who gave Yossi Chaim a gift certificate to Comp USA. Papa bought Yossi Chaim a Sega game for the PC, which he really loves. It's similar to the Sega Genesis version, except the music isn't as annoying. It has 21 levels, and so far, Yossi has made it to level 3! It is very hard.
Yesterday, Yossi Chaim came home for a few hours. He played in his room, and with the other kids. It was nice to have him home, if only for a little while.
Two of Yossi's friends stopped by for a short visit. Also, Chai Lifeline has sent us a video phone. Hopefully it will have everything that we need, and Yossi Chaim will have a hook-up to his class! Welcome to the '90s' ... it's amazing what we can do, right???? Please keep praying for him. As we get closer to day 100, which is May 3rd, Mommy is starting to get nervous about the bone marrow aspirate that will be done, even though Dr. Yanovich feels very confident that Yossi will continue to be in Remission.
Day +67
Well, it seems as if the "Cancer Roller Coaster" has struck again. With cancer, every time you have good news, you get bad news, (or when you have a good time, you get sick!).
This past Shabbos, Mommy went to stay with Yossi Chaim so Grandma could take the other kids to shul (Temple). Yossi and Mommy were bored, so they walked back to Yossi's house. Papa went to Grandma's to visit in the afternoon, and Yossi Chaim seemed fine. Sunday morning, Yossi Chaim woke up with a low grade fever (100). Grandma took him down to clinic, and they suspect he has an infection in his line (the catheter used to get medication in so that he doesn't keep getting stuck with a needle). They gave him IV antibiotics, and they took cultures. On Monday, he went for his regular visit. Thankfully, Dr. Yanovich was back from the conference he was at. It turns out that he isn't going to wait to see if the cultures grow, he just gave him Augmentin. He also said that the rash that was on Yossi Chaim's back is GvHD. (See, come home, and have fun, but get sick afterwards.) So, it's a little dissapointing that he has an infection, and that he has a little GvHD (actually a little GvHD is good, as it will fight any remaining Leukemic cells, if there are any), but he did give him some good news, he gets caffeine back!
Mommy took Yossi Chaim to 7-11 to get a Slurpee, and he chickened out... Got an orange one instead of Coke. Then it turns out it's diet! :-( ("Mommy, what does Orange Light mean???") He ended up tossing the whole thing. :-(
Some other good news is that his hair is growing back. It looks like Yossi is growing Groucho Marx eyebrows. He is just happy to be getting hair. His fingernails are also growing in weird... they have these lines in them. It turns out that like his hair, his nails were also killed, so they are going to fall off where those lines are. (New ones are growing in behind them.)
Keep him in your thoughts and prayers .... Everyone join in the chant "No infection! No infection! No infection!" It looks like day '+100' is May 4th, so that is going to be the major test to see if he is still in remission. April 15 is his next spinal tap. 'Til next time!....
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