For the last 3 years and five weeks, I thought Sept. 20th was the saddest day on the calendar. It was the day Yossi was diagnosed. I was wrong. Today we got the news every cancer family dreads ... His Leukemia is back.
A week ago Sunday, Yossi noticed that one of his testicles was swollen and hard. We told him not to wait when he notices things were wrong with him, so he told us. I took him to his doctor, who sent us to our Hem Onc just to be sure. The Hem Onc wanted a bone marrow aspirate and a spinal tap done, as well as a biopsy. The BMA was perfect, and the LP was clear. We were so happy, and his counts had been great. All that was left was the biopsy. The surgeon did the biopsy this past Monday, and he told my husband that everything looked good. We were so totally relieved. Today we all got a shock when the Hem Onc called to tell us that the biopsy showed he had relapsed with Leukemia cells in his testicle.
We are all devestated and heartbroken. We have several options we are exploring. Yossi wants to fight this as hard as he can. He is disappointed we have to do this again. He is older now, and realizes more what he is up against. But as I just said, he wants to fight.
Tomorrow we are going to do some blood work to get a better picture of exactly what is going on. Please pray for him!
YOSEF CHAIM BEN BREINDLE LEAH
Things are changing so fast here. I send out an email, and a few hours later that information is no longer true. So I have decided it's easier to update the website instead of sending out updates. Please check back frequently.
This morning we spoke with our doctor. He had spoken with the doctor from Sloan Kettering who is one of the top research doctors for Leukemia. They both agree at removing BOTH testicles. They disagree however on what is the next course of action. Dr. S. from MSK wants to sit and wait for the blasts to appear in the marrow. Our doctor wants to give chemo now to try and prevent this. The problem we have is this. ARA-C, and excellent chemo drug didn't work for Yossi. Infact, the blasts actually increased from 60% to 70%. So that one is not good for us to use. He got pancreatitis from L-asparagense. And IFOS gave him seizures. Now we are very limited in what we can use.
The other obstical we have is that we have no way to monitor the effect the drugs are having. He has no blasts in his marrow or spinal fluid. One thing we are going to watch for is blasts in his marrow by doing monthly bone marrow aspirates. But we have to decide if we want to use chemo (maybe methotrexate and 6-MP?) or if we want to sit and do nothing.
We are also planning on sending one of the testes and some new bone marrow down to St. Judes for testing to see if Yossi is likely to relapse again (G-d Forbid).
So for right now we are only having the surgery on Monday, Yom Kippur, the holiest day of the year for us. We need to figure out an action plan here. I am asking if ANYONE knows of a boy who had ALL with a BMT, and then relapsed in his testicle ONLY to PLEASE email me the name of the center who treated him. We are desparate to speak with another doctor who has a similar situation.
Please pray for Yosef Chaim ben Breindle Leah.
First of all, Yossi's surgery went well, and he is recovering nicely. He spent the night in the hospital, and will be returning home today.
Yesterday, before the fast, I went down to the hospital to sign the consents so Papa wouldn't have to do it on Yom Kippur (you are not allowed to write). I spoke with the doctor while I were there. During the conversation, I got the impression that this doctor really doesn't feel too hopeful. I basically told her that Yossi will be a miracle kid, and she hopes that I am right. When I got home, Yossi found out that his doctor wasn't too postitive, and he got VERY upset. I think part of it was fear of the operation. I spent a lot of time comforting him, and reassuring him that miracles happen. But now my husband and I are thinking that we need a more optimistic doctor.
Yossi and Papa were driven down to the hospital by Papa's friend Patsy. (Thank you so much, it was such a help!) Yossi asked the surgeon to put his port in on the left side. The surgeon said that he would try. While they were doing it, they ran into a problem, and put some dye in to see what was going on. The dye started to pool up, so they had to put the port in on the right. (Now Yossi has two incisions in his chest, but one port.) The removal of the testes went off without a hitch, and bone marrow was drawn. One testicle and two samples of marrow were sent to St. Judes to have them do a MRD test on them. This has never been done before, but they are going to try. At St. Judes, they freeze marrow when the children are first diagnosed. They can do this MRD to determine if a child is likely to relapse. They are going to use the testicle and the marrow to run this test to help us decide about doing chemo, and what chemo to do.
Many people have asked what can they do to help. I have come up with 3 things:
1. Pray for his recovery. We don't care what your belief is. Just pray, or send good thoughts, or light a candle, or whatever. Prayers from all faiths accepted! :-)
2. Take upon yourself to do a kindness everyday in Yossi's merit. Like when you are driving, and the guy next to you is trying to inch his way in... Let him in, and do it for Yossi. I feel that doing random acts of kindness will not only help score "brownie points" for Yossi, it will help to make the world a better place.
3. I would like my Jewish friends to take upon themselves a Mitzvah (commandment) in Yossi's merit. I don't need to know what you are doing. Just pick something and do it for him.
Keep praying for Yosef Chaim ben Breindle Leah. He needs all the prayers he can get.
WE STILL NEED TO GET IN TOUCH WITH A DOCTOR WHO HAS TREATED SOMEONE WHO RELAPSED AFTER TRANSPLANT. Please email us with the name of your BMT doctor if he has treated such a patient in the past. CakeLaydee@mindspring.com
Real quick update here...
Last night I went to the National Marrow Donor Program site, and used the list of all the BMT centers in the country. I picked all the major medical centers, and sent them a brief medical history of Yossi. I got back some really good responses. One wonderful doctor from MD Anderson called me, and was so hopeful and full of good ideas. I forwarded many of the letters to one of the doctors on our team that we like. He spent a lot of time today following up on those replies. He is in agreement with us that we need to do chemo, and it should be aggressive. He is talking about starting chemo this week. Our doctor would like to figure out what he wants to do long term, not just for the short while. I like that! We will probably know in a day or two what course of chemo we are going to use.
Keep praying! BTW, the guestbook isn't working. We are trying to fix that. Feel free to email Yossi using his address below. He doesn't always write back, but he does read all the mail he gets.
First of all, my husband has fixed the guest book. We did lose all of the old entries, so please sign it again. We don't want people to leave graphics though.
Today Yossi is feeling better from his surgery. He stayed home again today, but only needed pain meds twice. He went to have an echo-cardiogram done on his heart. One course of treatment that we have decided on has the potential to damage the heart. Therefore, his Hem-Onc doctor needs a base-line. Also, our pediatrician is fantastic. We have been asking our doctors for a CT scan to try and see if the Leukemia is in his lymph system. Dr. K ordered it, and tonight we got it done. We should have results from it tomorrow.
Yossi is such a tzaddik (righteous person). Not once have I heard him utter one complaint, or bemoan his fate. This afternoon my in-laws brought him to school for the last few minutes. He was walking with his friends very awkwardly. His legs were spread apart, and you could tell he was in pain. It broke my heart to see him like this. BUT NOT ONE COMPLAINT.
He is very anxious to start chemo. Our doctor has put together a plan after speaking to many other doctors and using my input. We are hoping to start Monday, and this is what it looks like we will do:
| Day 1: | Cytoxan, | VP-16, Adriamycin | (inpatient for 24-30 hours) |
| Day 2: | VP-16, Adriamycin | (day of discharge) | |
| Day 3: | VP-16, Adriamycin | (clinic) | |
| Day 4: | VP-16, | (clinic) | |
| Day 5: | VP-16, | (clinic) |
Please pray that this chemo will help to rid Yossi Chaim of this dreadful disease.
We found out that the MRD test is negative! This is really good news, as it means that Yossi Chaim is NOT likely to relapse in the marrow. This knowledge will help us in deciding chemo, how aggressive, how much, how long, etc. Yossi also had a CT scan done yesterday. The radiologist mentioned that the nodes in his chest were slightly enlarged. We are taking a copy of those scans down to the hospital to compare them to the ones taken 3 years ago. I only hope that they did the chest then! He was also concerned about a dense spot on his kidney. Our wonderful family doctor was able to get him into an ultrasound today. The ultrasound tech found nothing. There is a very slight possibility that the Leukemia is contained in his testicle. (It's very slight, as Leukemia is a blood disease, and it tends to get EVERYWHERE.)
Yossi will get to go on the school fieldtrip on Monday, and then head down to the hospital for chemo. Fun, huh?
There will be no updates until after Monday, as it's our holiday, Sukkos. Please continue to pray for Yosef Chaim ben Breindle Leah, and feel free to pass his name around to anyone who will pray for him.
The MRD long-term study showed up a few Leukemia cells, less than 1%. It's not terrible news, just proves what the doctor thought. The cells weren't just in the testicles. This doesn't change what we are going to do. It also gives us a way to gauge if the chemo is doing what it is supposed to do. We will send samples down to St. Judes every once in a while.
This morning Yossi got to go on his school trip. The upper grades went to a Maize Maze. It's a maze that was made in a corn field. It was really cool trying to find out way through it. It was a very warm day, especially for October, and I was very worried that Yossi wasn't drinking enough to get his chemo on time. But we all had fun, which was the point.
I took Goldie, Sruli, and Yossi down to the clinic. Of course we stopped off for Yossi's absolute favorite drink, a coke slurpee. Once we were down at the hospital, we went through all the usual stuff that we haven't done in almost a year... insert port, see a resident, etc. *YEECH* Hate having to give a history to a resident. I kept telling myself, "Be nice, it's not his fault he relapsed." But the guy has his whole chart there. Why do I have to repeat what is obviously so painful to all of us?
Yossi got up to his room, and we found out he would have a room mate. This is the first time he has ever shared a room. At first he was a little annoyed. There was no VCR in the room to boot. But then he started talking with the boy, and we found out that he is also 12. They both like Nintendo, and he brought his N64 from home. Presto, instant friends. Yossi told me tonight that this boy was dx in Jan of '97, and he relapsed this past year. So I guess he feels a kindred spirit.
The first of the chemo went in tonight, and Yossi is very excited about it. He is happy to finally be fighting the beast with real weapons, not just his positive thinking.
Yossi got most of his chemos tonight. The Cytoxon takes a while to go in. Yoss is so cute. He called me up after he got the decadron and zofran, and asked me if it would make him hungry yet. I laughed, and told him that it would take a while!
We got the news that the baby is NOT a match. Yossi is on the list to look for a new donor. As we do the bone marrows, we will know if we are heading for another transplant or not.
Yossi Chaim's counts are going to start to drop. So many people have asked what they could do. We are going to be using donor specific blood for Yossi, as well as platelets. If you live in the Richmond area, and would like to donate blood for him, please email Judy
and let her know that you would like to do this. Judy will know what we need, and when we need more. This all needs to go through Judy. You can email her if you have any questions. Yossi is now A/B, so he can take donations from anyone.
Please pray that this chemo does the trick. Yosef Chaim ben Breindle Leah.
I can't begin to say Thank You to all the people who have offered to donate blood. For right now, we are going to have two people go down for blood, and one for platelets. We are not sure how his counts are going to drop, and how much he will need. But thank you to EVERYONE who offered. We are keeping a list, and you may be called soon! (Although I hope not.)
Yossi finished up his chemo last night, and came home in time to watch part of the Yankees game. (Go Yankees!) He was feeling basically fine this morning, so he headed off to school. He will be getting his chemo in the afternoons this week, so he will be able to attend morning classes. He feels pretty good, just a little nauseous. (Go Zofran! *weak attempt at humor*)
Right now we are still unsure of our long range plans. Our doctor is going to be getting a protocol used in Utah to treat relapsed kids, and this will help us in deciding what to do with him. We are still unsure if he will need a transplant. It will all depend on what the MRD shows.
Thank you for all the warm wishes, and the prayers. Yesterday at the hospital, I ran into a woman who I thought I knew. As soon as I said my name, she said "Oh, I read Yossi's page!". I hope that this helps to keep everyone updated. He still needs loads of prayers and good deeds done on his behalf. We are going to work on our end to storm the Heavens. Pray for Yosef Chaim ben Breindle Leah.
Yossi Chaim has made it through the first round of chemo, and Thank G-d, he is doing well. This past weekend was our holiday Simchas Torah. Yossi went to shul with Mommy and the other kids. He was able to dance with the Torah, and because his counts were still good, he didn't get tired out. Yossi had a fantastic time, and it was great to see him enjoying himself.
A friend from our school who is a nurse has been kind enough to come everyday to give Yossi his GCSF shots. This is such a help, as it frees us up from having to give him these shots. (I hate to think that we cause him any pain in any way [other than the usual Mommy/Papa tortures that mean Mommy's and Papa's do, like making him do his homework or go to bed at a fairly decent time].) Thank you Terry for coming!
Yossi's counts are on the way down. Tonight he got a nosebleed, and I was a little nervous, so I took him to our local pediatrician. His counts are still in the normal range, but they are half what they were on Friday. He is due to either get counts done, or see the doctor on Wednesday.
One quick note on the blood ... Since Yossi isn't totally AB, the blood bank is calling his blood type AB+, but they want to treat him as if he is O+. After a lot of snaffoos with the blood bank and our doctors, we finally have the correct orders in. If anyone wants to donate blood in his honor, rather than for him, you can go to any blood center, and use this number 5498. Richmond Blood Services always needs blood, so please give, if not for him, than for someone else. He will get the merit and part of the good deed!
Please continue to say prayers for Yosef Chaim ben Breindle Leah, as well as for our neighbors brother, Yosef ben Sorah.
AAAHHHhhhh, chemo, one thing that can help, but OIY, does it hurt! Yossi Chaim is now starting to feel some of the effects of this horrible poison we pumped into him. His white count is really low, but Dr. G said he could go to school. Yossi was really upset about this. During school, he got really tired, and actually feel asleep on the couch (in the staff room, not in class). My father-in-law brought him home, where he took another long nap. He has been complaining of some jaw pain. Tonight he asked me to call the Hem Onc, his jaw REALLY hurt, as did his mouth. She had me take a flashlight, and look in his mouth. UUGGHH! It was all red and inflamed in the back. Poor Yossi! No wonder it hurt! We were lucky that we took him locally for counts. His platelets are high enough that the Hem Onc let him take Advil. (If the platelets are low, you can't take Motrin, as it prevents clotting.) So now he has to avoid basically all the foods he likes because they will hurt his mouthsores. He is a little happy that he got to eat "triangle pops" tonight.
Sorry to vent ... it hurts so much to see him suffering. It's just not fair. And he doesn't complain. This is just a fact of life for him ... just like we get up, go to work, do laundry ... he gets his chemo, takes his GCSF shots, get his finger pricks ... Something for all of us to think about the next we get upset over some little "problem".
Please continue to pray for Yosef Chaim ben Breindle Leah.
Yossi Chaim was feeling very tired today. He had terrible mouth sores last night that woke him up around midnight. The doctor recommended Tylenol with Codeine to help him make it through the night. He woke up everytime it wore off. This morning he was feeling run down, and asked to go to the doctor (locally) for counts. (We have the greatest pediatrician. She lets us come in just to get his counts, and helps us with the referrals and tests we need. THANK YOU DR. DEBBIE AND MARTHA! You two are the greatest.) His counts were low, but not terrible. Dr. Debbie called in a RX for "swish and spit" (stuff with lidocaine in it to help numb his mouth). Since the Yossman wasn't feeling up to school, I let him stay home. Yossi went to Grandma and Grandpa's house for the afternoon. He listened in to some of his classes, but got really tired. He took a short nap, and when he woke up, he was burning up. I took him down to the hospital with a 103.5 fever. He is going to be inpatient for a few days, at least. If nothing grows in the cultures they take, and his fever goes away, he can come home. It could be an infection he picked up (since his white count, the blood cells that fight infection, is almost nothing). Sometimes when a persons counts get so low, they get a fever for no reason. I am sincerely hoping that is his case. If we are lucky, he will be home by Sunday.
Please keep those prayers and good wishes coming for Yosef Chaim ben Breindle Leah.
Sometimes when a person's counts go way down, like when they are on chemo, they develope a fever for no reason. Sometimes it is due to an infection. The usual course of treatment is to grow cultures for 3 days, and treat with antibiotics. If nothing grows, and the fever goes away, then they can go home. So far, Yossi Chaim still has a low grade fever, and the cultures are not growing anything. However, there is a tenderness in his belly, and they can't figure out what this is. They did a CT scan last night, and they did another one four hours later. They were suspecting something called typhlitis, which has something to do with chemo and the intestines. Anyways, they ruled that out. Then they were suspecting appendecitis. The surgeon isn't sure, so he said that Yossi can't eat. POOR YOSS! He really wants to eat the rice I brought him for Shabbos. Also, his hair has started to fall out. He is helping it along slightly. He does this when he gets upset with the hospital, I think. Oh well. Hopefully they figure this out soon, and let him eat. Personally, my medical opinion is that it's nothing but a neutropinic fever. But then again, no one has asked me for my medical opinion on this.
Please pray for Yosef Chaim ben Breindle Leah.
I am really sorry for the delay to post any news on Yossi. We had some very serious computer problems that left me unable to use our computer, but they are being worked on now.
Besides losing my bookmarks and address book, I also lost my medical degree! My friend and old doctor (old because he left town,hehe) corrected me on my explanation on neutropenic fever. I quote Dr. Hirsch: "In the old days, (about 20 or so years ago), if someone was neutropenic and had a fever, they did cultures and watched, without giving antibiotics until the cultures came back positive. Unfortunately, a significant percentage of those patients died, usually from a gram negative infection (e.g. Pseudomonas, Klebsiella, Enterobacter, et.al.). So somebody got the bright idea to treat empirically for those bugs and it worked. There was an article in the Journal of Infectious Diseases in 1989/1990 about this and it gave a flow chart for how to give the antibiotics. So, now, we give antibiotics until the white count goes up and the fever goes away. The fever usually doesn't go away until the white count comes back, but the patients don't die. The cultures are usually negative (they don't turn positive until too late). Also, typhlitis is an infection of the intestines when your immune system goes south and you get bacteria in the wall of the intestine and you can't fight them off." Thank goodness for infectious disease docs, right? I stand humbly corrected.
As for the YossMan. He is scheduled to come home today. (Just in time to watch my cyber-friend, Mark Schumann, on Who Wants to Be a Millionaire tonight. He's in chair #3.) Our Hem Onc doc said that he will come home today, and I have to take him to the surgeon to have him examine Yossi. (This is Yossi's regular surgeon, but he was away from the office for the last week.) Then, when Yossi's counts are up, they will take the appendix out. I am a little nervous about this, and I also can't take him to the appointment. (My in-laws are going to take him.) We are going to ask if they could do another CT scan before they do the surgery. (It's done lapcroscopicly - if that's a word.) I am guessing that they want it done to make sure it doesn't get inflamed when we do the next round of chemo and really cause him some problems. Yossi's pediatrician said that maybe when his counts start to come up it might start to hurt him. So we are still watching and seeing. If he does get his appendix out next week, it will push the next round of chemo off a week.
So even though this is an update, I still don't know too much. He doesn't have fever, and has been eating. Continue to pray for Yosef Chaim ben Breindle Leah, and feel free to pass his name onto any prayer group or listserv that prays for others. Thank you all!