September 9, 1998 October 15, 1998 November 23, 1998
Day '+229'
Yossi Chaim had his Bone Marrow Aspirate and Biopsy today. The first set of results are back in, and they show NO signs of blasts (Leukemia cells)! He is still in remission, Thank G-d.
Dr. Jonathan Ben-Ezra performed the tests. As he pulled the marrow out, even though Yossi Chaim was sedated, he still called out that it hurt. (He won't remember this, but it is still hard to watch him in pain!) When Yossi Chaim had the Aspirate done last December, and he was first pronounced in remission, he also was in terrible pain. Dr. Ben-Ezra reminded us that a healthy marrow hurts coming out... I knew that, so actually I was a little glad.
Dr. Massey called, and the slide that she looked at shows NO signs of blasts, meaning that she saw no Leukemia cells. We are still waiting for results of the biopsy. That takes at least one day.
Right now, there is talk that he might start coming to clinic twice a month, instead of every week. He will have another Bone Marrow Aspirate/Biopsy one year post-transplant, which is the end of January. Then he might not need one until the following year!
It was a very emotional day for me. I look back at the past year, and see how far we have come. We especially chose this day for his tests, as this is exactly one year (on the Jewish calendar) since he was diagnosed. Today's Hebrew date is the 18th of Elul. In Hebrew, 18 is read "chai", meaning life. I took a lot of encouragement from this -- He was diagnosed on a day that means life! Elul is also the month where we consider G-d to "come down" from the Heavens, and dwell right among us. He is close to us. I truly feel that now. On such an auspicious day it is great to get such fanatastic news!
I feel so thankful to G-d that Yossi Chaim is doing so well. When Yossi Chaim failed his remission induction, life looked so bleak. He was barely given a chance for survival. And yet, he has beaten all the odds! I can't say it enough! BARUCH HASHEM! THANK G-D! Yossi Chaim is truly a miracle story.
Although we still face the fear of relapse (G-d forbid), or secondary cancers, I still feel very hopeful that he has beaten this horrible monster!
There are still so many children out there who are suffering from other forms of cancer, and parents are still watching their children die. While we are rejoicing in our wonderful news, there is still so much to be done! WE NEED A CURE FOR THIS BEAST!
Please continue to pray for Yosef Chaim ben Briendle Leah, as well as all the other children/families suffering this horror!
Mommy
Day '+265'
Well, we made it through the holidays! It was such a difference from this year to last year. We kept looking back and comparing what was going on last year to where we are today.
THE MONTH IN REVIEW
Sruli was born the day after Yossi Chaim's one year anniversary of diagnosis. (What was most ironic was that last year Yossi Chaim wasn't allowed to eat on Rosh Hashana [he had Pancreatitis] and this year I [Mommy] wasn't allowed to eat [since I was in labor and had an epidural].) Last year we were separated on Rosh Hashana, as we were this year. The difference is that this year it was for a good reason.
Last year, on the Hebrew day of Hoshana Rabah (the last day of the holiday of Succos), Yossi Chaim failed to achieve remission. It was truly one of the lowest points. I was with him in the hospital (we were trying another round of Chemo). Papa ended up coming down, as Yossi Chaim refused to eat without Papa there. The situation looked so bleak. In fact, at that point, we were told to prepare ourselves for the unthinkable. (The doctors didn't think they could get him into remission. It just shows how much they know. Thanks to Mommy's research and diligence, we found a protocol that worked!)
This year was the opposite, BARUCH HASHEM! THANK G-D! We walked over to my in-laws, all of us. Papa, Grandpa, Yossi Chaim, and Shauly all danced the hakafos (circles with the Torah) together. Then we all sat down and ate together. It was the first time we were ALL together in more than a year. It was nice, and we hope to be able to do it again soon.
Yossi Chaim's medical condition seems to be stable, and getting better all the time, THANK G-D. He doesn't have to take Lactaid pills with dairy anymore, and the Zantac has been cut out. His Magnesium Oxide has been cut down to one pill a day. He is still taking Bactrim 3x a week, as well as his Acyclovir. It also seems that he won't be needing weekly blood counts anymore. I am guessing that he will soon be cut back to bi-weekly clinic visits. He will start his shots (again) in January. We hope that he will be able to come home for weekend visits once he starts his shots. We are not sure of the long term plans as far as his moving back home for good.
One scare we had this month was that at my insistance, they tested Yossi Chaim's blood type. My hope in doing this was that we would see that his blood was Type AB now, the donor's type. Instead, the test showed that Yossi Chaim has O red cells (but his white blood type has become AB). This has sent up a "yellow flag", something that they will keep a watch on. We are going to retest his blood on October 23rd. We have heard that it could take longer for the blood to completely turn over, and we hope this is the case with him.
YOSSI CHAIM LOST A TOOTH TODAY!
Although things are going well, they could change at any moment. Please keep him in your prayers. Yosef Chaim ben Briendle Leah.
Day '+304'
Things are moving along. Yossi is doing very well. His blood counts have stabilized and are even increasing, with out receiving any more 'Epo'. The only slight causes for concern are a slightly elevated liver enzyme and the fact that his blood has still not completely turned over to the type of the donor. Speaking of Donor, we are hoping to get to meet him in 2 months, as today is 10 months since the transplant! Yossi is going to Disney World in a few weeks. He wasn't able to go last year so he is really looking forward to it. Yossi also has a brand new bedroom at home waiting for him. He may start coming home for a night here and there next month and we are hoping he will come home for good ny June! Yossi is doing very well with his school work. He got straight A's! He is very dedicated and is completely caught up to his grade, after missing so much of last year. Yossi's foot problems seem to have cleared up. He will stay on medication for another 2 months or so and then start getting his immmunizations. We hope he will be able to go back to school next year. Physically he is just about 100%. Papa got him an exercise bike and he has been riding it almost every day in an effort to get back in to shape. He has been spending more time with his siblings lately, which they all enjoy. Keep up the good work, Yossman!
Older updates...
Oct. updates
Nov. updates
Dec. updates
Jan. updates
(second half) Jan. updates
Feb. updates
Mar. updates
April and May updates
June, July, and August updates