Dec. 5, 2000
Dec. 12, 2000
Dec. 19, 2000
Dec. 20, 2000
Dec. 23, 2000
Dec. 27, 2000
Dec. 28, 2000
Dec. 30, 2000
Yossi went to clinic yesterday, and Dr. Grossman said he looked great. Yossi basically feels pretty good. He isn't bothered as much by the mouthsores. He still gets cramps in his legs, but not as bad. He is very irritable from the decadron, though. He yells at the other kids for silly things, and gets real upset over nothing (to me, at least). It's also making him very hungry. Yesterday Yossi called me from school that he was starving, and needed me to bring him more food. He eats all day until he is stuffed, but still feels hungry. I will be very glad when we start to taper off the steriod!
Yossi doesn't really want to go to school right now. He says that it bothers him to see the other kids playing at recess, and running around. He feels a little left out, but he also feels sad that he can't do normal kid things.
Yossi is excited about his trip to Disney in January. We are going to try and work out his chemo so he can go. Yossi has one more vincristine to get next Monday. Then the following Monday he goes in for the works. Disney will be 4 weeks after that, so hopefully that will be enough time for his counts to recover.
Yossi is also very excited about his upcoming Bar Mitzvah. We ordered his Tefillin, and they will be written just for him. I am hoping that this will help him in a spiritual way. I am trying to cover every base here, helping him in every and anyway possible. That is one of the reasons I ask for people to pray for him, and to continue to do good deeds in his merit. Every little bit counts.
I have heard some beautiful stories about the gold ribbons being sold. One little boy took his tooth-fairy money to buy a pin. Another girl used the money she saved up. Isn't that sweet!?! One father went and slept down at a homeless shelter one night. I would like to say a big THANK YOU to those people who have helped with the gold ribbons ... Ellen Renee, Aldebron, Barbara, Ruby, Debbie, Lin, and more. The money is being used to help defry Yossi's medical expenses, and the leftover money from the pins will go to Chai Lifeline. Thank you to all the people who pray for him, and for all the good deeds being done for him. IT ALL HELPS!
Keep praying for Yosef Chaim ben Breindle Leah Paley.
Yossi went down to clinic yesterday with Gramps. We were shocked when he came home and told us that his white count was 24,000! This is the highest it has been since he was first diagnosed 3 years ago. (A normal white blood count is between 4-10K. At DX, Yossi's was a whooping 314,000!) Then Yossi tells us that they want to do a bone marrow and a spinal tap next Wednesday. We thought that he wasn't due to get one until after this next round of chemo. So we had our Hem Onc paged, and it turns out that we were totally mistaken. (Or no one ever clarified everything to us.) Anyways, he is getting a total of 4 rounds of chemo for induction. He is going to get a BMA (Bone Marrow Aspirate) and LP (Lumbar Puncture) after round 2 and round 4. I think that the marrow will be sent down to St. Judes to do the MRD testing (this is really sophisticated testing that can tell us a lot more than the local guys). So next Wednesday is a big day for Yoss. He will get chemo everyday next week. Dr. Grossman also told us that it's expected that his white count would go up, that is because of the decadron. So we didn't have to worry about his white count or the fact that he was having these tests done next week.
Yossi feels pretty good, Thank G-d. He doesn't complain too much. He is constantly bloated, and starting to get very round in his face from all the steriods he took. We are now at the point where we are tapering it off. He also has a TERRIBLE time sleeping. Now I don't normally keep very good hours, but he is totally beating me in the not sleeping department. He goes to sleep very very late, and then he wakes several times. Often he is up for the day between 5 something and 6 (hours that are not meant for humans to see on the AM side of the dial IMHO). And he still manages to go to school, do his homework, and play on the computer!
This past weekend Mr. Baldacci returned, and brought Yossi the first edition signed copy of Harry Potter IV. It's so cool. The cover is different, and some of the words are different. It's cool to see the diffences between the two books. Yossi decorated a cake I baked for Mr. Baldacci to thank him. He is coming to our house tomorrow so that we can take some pictures of him and Yossi together. It will be nice to show all of you the happy times Yossi is having now. Mr. Baldacci is a really nice guy. Everyone should go out and buy one of his books!
Ok, this is getting really long. Please continue to pray for Yosef Chaim ben (son of) Breindle Leah (his mom) Paley. (Some people have asked us why his name is written this way. This is how Jewish people pray for sick people, using the full Hebrew name, and the mothers Hebrew name. BYE!
Yossi went down to clinic yesterday for his 1st day of round 3 of the chemo. He has gained 4 pounds since his last visit, bringing his weight gain for this month up to 16 pounds! It's all from the Decadron, which has thankfully been discontinued for round 3, but will be restarted for the 4th and hopefully last round of induction chemo. His face is very puffy, and so are his fingers, belly, and feet. His feet are so puffy that he has a hard time getting into his shoes, and is basically wearing slippers most places.
Yossi got to go with his good friend Ari this past Sunday to see a movie, The Emperors's New Groove, which he enjoyed immensely. He also did a little shopping at a mall. Yossi has an incredibly big heart. He wanted to take the money he got as a Chanukah present and buy presents for other people. We told him not to, that he should use his money for himself. He did insist on buying Gramps a new hat, and had a lot of fun searching the internet for the perfect hat. He found it, and Grandpa was so happy when he got it he started to cry.
Yossdi gets to go to clinic everyday this week. Today's appointment will be a short one. Tomorrow is a long one, as he will have the LP and BMA done. Please say some extra prayers for him tomorrow. We won't have the results for a while, especially with the holidays here. As soon as we hear something, I will update the site.
Please pray for Yosef Chaim ben Breindle Leah
Yossi went down to clinic with Grandpa today. Papa came down to be with him during his BMA* and LP**. I showed up during the procedure. Yossi had been put under as he always is. This time they used one third the amount of anasthesia they usually do. He heard my voice in between the 2 precedures, and said "Hi" to me. Then they put him back under again. Yossi is a real trooper, and didn't complain. So far we have heard that the marrow that Dr. Grossman saw still appears healthy, which means there is at least less than 1% of leukemia cells. They will still send it to St. Judes to check for MRD. Last time the total amount of Leukemia cells was less than 1/100th of a percent. So, although the conventional tests were clear, there was still evidence of the disease. They will now compare this second bone marrow sample to see if the total is more less or the same as last time. Less would be great, especially if they found NOTHING. Then, they would continue with this 3rd round of chemo and then do a fourth and then begin to taper it off some. looks great. So we are not going to get our hopes up until we hear the results of the MRD***. We should hear next week, we guess. The results of the LP aren't back yet, so we don't know if his CNS**** is clean. (We are assuming it is, because so far it always has been.) So basically we know no more than we knew yesterday!
Keep praying for Yosef Chaim ben Breindle Leah.
*BMA= Bone Marrow Aspirate
**LP= Lumbar Puncture
***MRD= Minimal Residual Disease
****CNS= Central Nervous System (which has the spinal fluid)
Please forgive any typos, I tried to get this posted on Friday, but Geocities wasn't working for me.
Some good news, just in time for Chanukah! Yossi's spinal fluid is clear, which means no Leukemia cells there. Now if we can just wait until next week when the MRD results are back ...
Yesterday at clinic Yossi had a low grade fever. In you or me, this wouldn't make a difference. We would go on with our lives, and probably not even notice it. However, with a person on cancer treatment, anything over 100.4 is cause to worry. Luckily, he never got there. They did do cultures and sent us home. Yossi took a nice nap, and when he woke up, felt very warm. When I took his temp. it was 100. I called Dr. Grossman just to make sure. We were planning a nice Chanukah gathering with our family and really didn't want to have to go "in-patient" now. He said to try Tylenol, and if anything was really cooking, the Tylenol wouldn't help. So we made it to our party, and we had a great time. The kids were overwhelmed with presents that Grandma & Grandpa, us , Bubby and Zaidy, and Grandpa Franklin and Sandy gave. They had a wonderful time opening them. They received clothes, jewelry, toys, and tons of other cool stuff. I can't stress how much fun we all had. I took a whole roll of film of everyone opening presents, and Yossi was manning the camcorder. When he handed it over to me, I saw that he was "recording" in the standby mode ... meaning that he recorded nothing! LOL! After the presents we had a lovely meal with the latkes (potato pancakes) Yossi made the week before and froze for this night.
I got a digital camera which is going to come in real handy as far as getting pictures up here quicker ... as soon as I can totally figure out how to use it, upload the pictures and everything.
So now Yossi has finished this 3rd round of chemo. We have to sit and wait for his counts to drop and then come back up. Then Yossi is off to Disney for a few days, and then round 4 of chemo.
Happy Holidays to everyone, whatever you are celebrating! Keep praying for Yosef Chaim ben Breindle Leah.
I type this update through very tearful eyes. Dr. Grossman has just called to tell us that the chemo we are giving Yossi isn't working. The MRD test has shown an increase in the Leukemia cells in his marrow. It feels like the drugs and everything are a total waste of time. Why are we putting him through all this? His life is miserable. He can't play and do the things he enjoys. His stomach has been hurting him for days and days. He can't eat the foods he likes. His mouth is starting to hurt again. And now to find out that all his pain and suffering is for nothing is a little hard on all of us to bear.
We are looking into various transplant options. We are thinking of going to the Hutch in Seattle, MD Anderson in TX, or St. Judes. I was thinking of Hadassah Hospital in Israel, but they are not on our insurance so that kinda rules them out. We do have 16 potential donors on from the bone marrow registery. We also have my father-in-law who is a 5/6 match, as well as my husband who is a 4/6 match.
Right now I don't know what is going to happen. Dr. Grossman said that we should go to transplant as quickly as possible, within the next 4 to 6 weeks. It looks like Yossi will be able to go to Disney. When he gets back, we need to be headed somewhere for his transplant.
One of the hardest things to think about is his Bar Mitzvah. What will be? Where will we be? And the scarest thought of all is will there be a Bar Mitzvah at all?
Please pray as hard as possible for Yosef Chaim ben Briendle Leah.
Last night, not long after I typed the update, Yossi's fever finally went above 101. When I spoke with Dr. Grossman, I asked him if we could wait until after dinner to bring him in. Dr. Grossman didn't want me to wait, so we packed up dinner for us, and headed off to MCV. At first Yossi's fever was still low grade, and it looked like we might get to go home. But after they got the counts back, it was decided that Yossi needed to be admitted. (His white count was .8; hemoglobin was ??[we forgot] and the platelets were down to 21) We didn't get to a room until after midnight. (It seems that a ton of kids decided to get sick yesterday.) Then the residents had to examine him. We finally tried to go to sleep well after one. I had a horrible night, as that is when all the horrible thoughts start to creep into my mind. I have no idea when I finally feel asleep, but around 5 Yossi started to shake and shiver uncontrollably. He had a reaction to the platelets he recieved. He was crying because his back hurt so much, and begging for pain relief. His fever went up very quickly. It reached 102.6, which is the highest it had been. After he got Tylenol with Codeine and more Benedryl, he calmed down and we both finally feel back to sleep. When he awoke at 9, his chest hurt, and his port was stinging. It turns out the needle had infiltrated his surrounding tissue. The fluid wasn't going into his port. His right side of his chest was all swollen and puffy. The nurse pulled his needle, and tried 3 times to re-insert it unsuccessfully. Yossi was given a choice to try one more time, or have the needle left out, and get an IV. Yossi agreed to get the IV, but he is very uncomfortable.
Every nurse and doctor we have met throughout last night's and this mornings experience has been so kind and wonderful. It really means a lot to us.
Today we start on the task as to what transplant center to choose. I don't even know where to start! I feel as though I am watching a glass tumble out of my hand. I know the glass is going to shatter, but I am helpless to stop it. Right now our life is falling to pieces. I am terrible worried not only about Yossi, but all of us. What is going to happen to the other kids? How will they manage with one or both of us gone for an extended period of time? I feel like I am a glass tumbling down, about to shatter.
Please continue to pray, and please take upon yourself a good deed daily for Yosef Chaim ben Briendle Leah
First of all, I had thought last week that I would be able to update the site again, but I never got a chance. Sorry!
Papa stayed with Yossi Thursday night, and he received two units of blood (packed red cells). They had a pretty good night. :-)
Yossi's fever stayed under 101, so Dr. Grossman let him come home for Shabbos. Friday night Yossi started to get fever again, and we got nervous that he would have to go back down, but Thank G-d it stayed under 101. We were hoping to be able to enjoy the snow they predicted for the East Coast, but NOOOO! We got a few flurries in the afternoon. The rest of the coast has a winter-wonderland, and all we have a lot of cold. (We all love the snow, BTW.)
We have narrowed the choices of the hospitals down to two. The first is the most famous, Fred Hutchinson in Seattle, WA. They do more transplants than anyone in the country. The second choice is Fairview in Minneapolis, MN. They do a lot of transplants too. Both hospitals look very good, and it's going to be hard to decide. Our doctor is doing research for us, and we are also doing our own research. The Hutch does the most, so they would certainly have experience with a case like Yossi's. But being so big makes me nervous. I wouldn't want him to get lost in the crowd. Also, housing in Seattle is expensive. Fairview looks like they have a top-notch program. They are doing research to prevent relapses, and that certainly appeals to us. From what I have seen on the internet, the program at Fairview has a lot to offer. The bottom line will be who has the best to offer Yossi.
When we go to transplant, Yossi will get to go with both of his parents. The other kids are going to move in with their grandparents. They are very excited about this, and we have started giving extra hugs and kisses to make up for all the ones we are going to miss giving when we are gone.
So, Yossi is home, and having a blast with his friends. This afternoon a couple of boys came over to play with Yossi. Tonight Yossi asked if one of them could sleep over. I don't know why they call it a sleepover, that is the one thing they AREN'T doing. Oh well, he's having fun, and being a normal boy. It's great!
Keep praying for Yosef Chaim ben Breindle Leah.