Day +73
Today was a very long day for Yossi Chaim and Grandpa.
Yossi Chaim had his regular clinic visit. He had to get IVIG (to help make cells grow.... he gets it once every 2 months) which takes 4 hours to go in.
Then, Dr. Yanovich decided that he wanted to biopsy the rash on Yossi Chaim's back and stomach. However, once they got to the other side of the hospital, they found out that they needed a referral from his primary doctor ( Cigna! :-( yuck! ). Thankfully, he got it. (It seems very stupid to have to get a referral when this is all part of a treatment that is covered, but that's Cigna for you!)
They headed back to the transplant clinic to recieve all the treatments for today. The hope was that they would finish by 4:30 to save the hassle of returning on Tuesday to do the biopsy. They finished around 4, and headed back to dermatology.
First, they sprayed Yossi Chaim's back to numb it. Then he got a shot (which stung when it was going in). Yossi Chaim used his special breathing -- Alakazam! -- to help him through it. After the shot, Yossi Chaim thinks that she took some skin, but he didn't feel a thing. Next he got 2 stiches. After she put the bandaid with cream on it, Yossi Chaim and Grandpa came home! They got home around 5pm!
So far, Yossi Chaim has had around 5 fingernails fall out. Grandma says that the hair on the top of his head is coming in blond, but his eyebrows are really dark. Yossi Chaim says that his eyebrows are turning blond.
Exactly four weeks from today Yossi Chaim will be having his bone marrow aspirate to see that he is still in remission. Keep him in your thoughts and prayers!
Day +81!
HAPPY BIRTHDAY YOSSI CHAIM! Today is Yossi Chaim's 10th birthday (on the English calendar/ 27 Nissan on the Jewish calendar)!
Before the regular update, I would like to share a few memories about Yossi Chaim when he was little.
Everything about Yossi Chaim has always been very special. Yossi Chaim was born in Brooklyn, New York, at Maimonides Hospital. (The nurse that was with Mommy during her labor and delivery was a religious woman. After Yossi Chaim was born, she came to visit Mommy and Yossi the next day. She told them that Yossi Chaim was born on a very special day, Yom Hashoah (the day of remembering the Holocaust). She also said that it was so beautiful to see a Jewish child born on this day, as she was a survivor!
Yossi Chaim was a "late" talker. He did manage to get his point across, but he didn't actually start to speak until he was almost 3. He did do a funny thing after he began to talk. One Shabbos afternoon, he knocked on Mommy and Papa's door. Papa called out, "Who is it?" Yossi Chaim answered, "Yossi". When Papa asked him, "Yossi who?", he answered, "Yossi, Yossi Perry, your grandson!" We still tease him about his today!
Yossi was infatuated with fireman and policemen. When he was 4, Yossi Chaim and his friend Avrummie had a "fireman" birthday together (they were born a day apart). They have been having birthdays together for a few years. Before Yossi Chaim could speak well, he used to call police cars "whoa whoa kuys".
Yossi Chaim has always been an excellent big brother. One time, when Goldie was just a few days old, (and Yossi Chaim was only 2!) Goldie was in her crib crying. Mommy was sleeping on the chair in the living room, and didn't hear her. Yossi Chaim pulled her out of the crib, and carried her down the hall, and gave her to Mommy! How he did that, we will never know!
Yossi has always played nicely with all the other kids. It's very obvious how much he loves the other kids.
Yossi Chaim is continuing to do well. Tomorrow he will have another spinal tap done. Again, this is just a precaution since he had those white blood cells in his spinal fluid before the transplant. Then, in 2 weeks, he will have a bone marrow aspirate. This will tell us if he is still in remission. We are trying to schedule it for May 4, as that is day +101 (already a day late!). (It also has special meaning to our family for other reasons.)
Yossi Chaim's hair is growing back all over his head. As we have said before, it is coming in dark. It is hard to get used to his "new look". Yossi Chaim will be allowed to try some new foods after Passover, like pizza, spaghetti sauce, and hamburger helper. Some more of Yossi Chaim's fingernails have fallen off. Yossi Chaim thinks that the rash on his back and stomach is from the bactrim that he has to take. We won't get the results from the biopsy for a while yet(thanks to our Insurance carrier!). Once we get those back, if everything is OK, then Dr. Yanovich can cut back on his Prednisone.
Keep Yosef Chaim ben Briendle Leah in your prayers, especially tomorrow, April 15th, and again for May 4.
Day +82
Yossi didn't have the Spinal Tap done today. First he had to go to clinic. They took blood. Then they found out that he has an infection in his line, so he needs antibotics every 12 hours. At least they are going to let him do this at home.
He has the LP rescheduled for next Wed. We also found out that there is no way that they will do the bone marrow aspirate down in the Ped-Onc clinic on a Monday, since Yossi Chaim likes to be put to sleep (they only do it on Wed. and Fri.). So we are waiting for Dr. Yanovich to come back so we can find out if he can do it on that Monday.
The date is very important to us, for a number of reasons. First of all, Leah is planning on going back to work on Tuesday, pending the outcome of the BMA. Second, it is Grandma's father's yartzheit [the anniversary of Great-Grandpa Sol's death], and a very auspicious day for us. Yossi Chaim went into remission on the day of Great-Grandpa Joe's (Grandpa's father, who Yossi Chaim was named after) death. Since Yossi Chaim and Grandpa Sol were very close, we think that it will help to have it on this day.
We have just added a new feature to the site, a link to Amazon.com. If you have never been to Amazon.com, it is the largest bookstore on the Web. Leah loves it, and thinks that it is wonderful. You will find the link above, as well as on our first page. Take a moment to look.
Keep up the prayers for Yosef Chaim ben Briendle Leah.
Day +94
Sorry for the laspe in the updates. A lot of nice things have happened to Yossi Chaim.
First of all, we got the results back from the last spinal tap. It was clear, with NO white cells in it (that's normal!). So we were all very happy to hear that. Next, we were able to work out having his major test (the bone marrow aspirate) scheduled for May 4th. This is the test to see that Yossi Chaim is still in remission. (Notice it is said in the postive!) We are hoping and praying for good news.
Yossi Chaim came home last Thursday for his Hebrew birthday. Mommy made him "fake" hamburger helper, which he really enjoyed. We had lowfat cake, which he didn't like. Oh well! :-) Mommy and Papa got Yossi Chaim a camera for his computer, so he can take video calls. (His school put in a phone line, and he will be able to participate in his classes now.) Grandma and Grandpa bought him this big Atat walker. It's really cool.
On Sunday, Yossi Chaim again came home for dinner. He was wonderful. He tried very hard to set a good example for the other kids, being helpful and polite. It was so nice to sit and eat dinner as a family.
We would like to express our condolences to the Boehm family. Their son Elan passed away during the Passover holiday. He was a source of encouragement and inspiration to Yossi Chaim. "May they be comforted among the mourners of Tzion."
Keep up the prayers for Yosef Chaim ben Briendle Leah, especially on May 4th.
Day +101
As you might have seen from the java script scrolling along the first page, Yossi Chaim is still in REMISSION! Papa took Yossi Chaim down to MCV for his bone marrow aspirate AND biopsy. A family friend, Dr. Ben-Ezra was the one who performed the procedure. The preiminary results are fine. We have to wait another day or two to get exact results, but he is still in remission.
The next step is to have his line removed on Wed, and a new port put in at the same time. The reasoning is that the Hickman has two lines, and he doesn't need it anymore. He will still need the port for easy access for blood draws.
Yossi Chaim is doing well, trying some of his old favorite foods slowly and with caution. Tonight Mommy is going to make one of his favorite foods, sweet and sour meat balls to celebrate this great news.
Please say prayers for Yoel ben Zelda Yitta who will be having his stem cell transplant tomorrow. Also keep in mind Chaya Mintza Kaila bas Miriam who is in need of prayers and Baruch Yosef ben Adina Batya. On a side note, two of Mommy's cyber-pals have kids that also REALLY need some prayers and good thoughts. David and Elana have both been told by the doctors that there really isn't much more that they can do. The parents aren't giving up. Please pray for them, too.
Day +104
As some of you may have noticed, the surgery that was scheduled for yesterday was put off until today. On Tuesday, Mommy got a phone call with the instructions for Yossi Chaim's operation on Thursday. Mommy called them, and reminded them that he was scheduled for Wednesday. No, they changed the appointment, and didn't bother to tell US!!!
Yossi Chaim had to go into clinic for a short visit yesterday, as one of his counts was too high. He ended up needing more fluids, but that can be done at home.
Mommy had her first day back at work yesterday, so Yossi Chaim had his first afternoon almost all alone. He did have a new rabbi, Rabbi Menachem come visit. (He had a form of Leukemia as a teenager.) Yossi Chaim is happy about this special visitor.
Mommy also had the "fun" experience of finding out that the small rash she thought was a spider bite was really shingles. As soon as the red dots go away, she can visit Yossi Chaim again. (Although it isn't contagious, extra precautions are needed with Yossi Chaim.)
The plans are that next week Yossi Chaim will begin a new anti-viral medication, and he will only be going down to clinic once a week. The next bone marrow won't be for another three or four months. He is still taking the immune-suppressant drugs, and therefore still can't come home or go to school. We aren't sure how much longer that will last, but our guess is through the first of the year.
Thank you again for all the prayers.
Day '+107'
Yossi came through his surgery OK on Thursday. However, it was over 2 hours long and left him feeling pretty poorly. He came home and was only able to get through the pain with Percocet. By Saturday the Percocet caught up to him and he was vomiting most of the day, unable to keep ANYTHING down. After cleaning up a very big mess (Papa always seems to get 'stuck' with all of Yossi's low points...but there haven't been many lately!), Papa called the clinic and they told him to stop the Percocet. He was to take Tylenol and put ice on his neck and chest for the pain. By the afternoon he felt better and was able to eat a little bit. Today, Papa took him down to the clinic to have his Creatinin checked and this time they were happy with it, so he didnt have to take anymore IV fluids. He is quite tired, though and came home to take a nap. Earlier in the day, Yossi spent his own birthday money to buy his siblings presents! That was very nice of him. Tomorrow will unfortunately be a long day at clinic for the YossMan, but after that he should be going only once a week, for a short visit. Let's hope that he continues to progress, stay in REMISSION and stay healthy!!!
Day '+115'
After a semi-rough week or so, Yossi is feeling and looking great! The bone marrow aspiration, bone marrow biopsy, surgery, and medications he received the last week or two were a lot to take, coming right after each other. His back was sore for a few days from the bone marrow tests. Then he had surgery to replace one central line with another. That was actually like having two surgeries, and they did it OUTPATIENT! The pain killers he took after that were very hard on him. Then his white blood count dipped too low so they gave him 4 days of intensive growth factor treatment. That causes severe pain in the back and joints. Luckily that is all over with for now. Last Thursday they saw that the growth factor did it’s job and today, his count is even better than Thursday. However, his Creatinin level continues to be too high and now has even gone over the normal range, even though he continues to drink as much as he can. He will get intravenous fluids for the next few days to try to keep that very important indicator under control.
Last Thursday Papa took him to clinic. On the way to the car, Yossi had a big grin on his face. Papa, knowing Yossi, figured that Yossi must be playing some sort of trick on him. It turns out that Yossi was so happy to be able to go outside without a mask for the first time in months that he couldn’t stop smiling. Maybe it is a small thing, but it is very important to Yossi and it shows how grateful he is for these little things. It also shows that he is progressing on his long and hard journey. He wants very much to be a ‘normal’ kid. Keep it up Yossman!
Day '+124'
Today Yossi Chaim went down to MCV for his monthly spinal tap, and weekly check-up. (Results will be added later when we get them.)
Yossi Chaim is really doing well, thank G-d. We had received a Via 8x8 videophone from a group in New York (on loan). This would enable Yossi Chaim to participate with his class. However, we have had a lot of difficulty in getting it to work. Finally, Mommy just brought the speakerphone into school, and Yossi Chaim now listens to lessons for a few hours almost everyday. At first, he had a hard time, but now he is getting into the swing of things. It's really fun for him to talk to his friends.
This past Shabbos, 2 of his friends came to visit him. They were playing outside, running around, and generally having a great time! It's heartwarming to know that Yossi Chaim can start to feel like a normal child again.
However, there are still a lot of restrictions on him, and he is still bored and lonely most of the time. A rabbi friend came last week, and took him out for a while, which helped to brighten up his day. Papa took him out for a few hours on Sunday, which he also enjoyed.
As of right now, Yossi Chaim is still living with his grandparents. We are not sure when he is going to be coming home. He might have to stay all the way until late Jan. when they will start to cut back on his cyclosporine (immune suppressant drug).
We are hoping that Yossi Chaim will be able to come home for an overnight visit this weekend. It is a Jewish holiday, Shavuos. We would like him to come home Sunday for lunch, sleep over, and return back to grandma and grandpa's house after lunch on Monday. This is all contingent on the other 3 kids being healthy! Please keep them in mind when you pray for Yosef Chaim ben Briendle Leah!
Older updates...
Oct. updates
Nov. updates
Dec. updates
Jan. updates
(second half) Jan. updates
Feb. updates
Mar. updates