Dec. 1, 1997
We got some great news about Yossi Chaim today. First of all, his (blood) counts were great! (White blood count=4,600; red blood count=12.2; platelets=114,000) However, his bone marrow was even better! To refresh some of you, here is a run down on what has happened---
Sept. 22- Bone marrow (BM)with 95% blasts (leukemia cells)
Oct. 7- BM with 93% blasts
Oct. 22- BM with 60% blasts
Nov. 7- BM with 70% blasts!
Dec. 1 BM with 28% blasts! HOORAY!!! We are now making some progress, and we are heading in the right direction.
Now we are doing 4 days of chemo out-patient...He is going to get basically the same stuff as before...VP-16, plus cytoxan (it's a cousin of IFOS), plus they are going to give some more vincristine, on my request. (This is going to be followed up with GCSF for 10 to 14 days.)
We also have two possible donors who are 6/6 matches, so they are going to proceed with testing the donors, so that they can be ready to go ahead with the transplant when he is in remission.
Yossi Chaim feels so good. He went to see Flubber with his friend tonight. He is very excited about his social studies project (he has to build a model of a fort in VA). It is so wonderful to see his cheeks so rosy! I almost feel like I am getting my son back! It's almost a little scarry to get hopeful, given all the bad things that have happened, but then again, it is finally our time to have some good news, right!???
Keep praying for Yosef Chaim ben Briendle Leah.
Dec. 10, 1997
Today Yossi Chaim went down to MCV just for a simple blood check. His counts have started to fall (a result of the chemo, one that we had anticipated). If you really want to know the numbers...here they are-WBC=800(with very few poly's[cells that fight infections]0; RBC=10.2; platelets were holding at 52,000. So for today, he is fine, except he is very susceptible to infections and colds.
This past Monday, Yossi Chaim had a bunch of tests done in preparation for his transplant. The tests are basically to get a base-line reading to use to compare after the transplant, and included checking his vital organs, like his heart and lungs. The transplant team has decided to go with a 44 year old male. We are not allowed to know where he is from, or anything more. They are going to get a commitment from him that he will give the marrow. They have decided that it will be done in Jan, but we don't know when. Yossi Chaim has also been invited to Disney World to participate in Camp Simcha. We are not sure now if he will be able to attend. It just depends on when the donor can do the harvest, and when he goes into remission.)
We are very happy that we have a match, and that we are moving ahead with this. However, I am still very anxious about this. The survival rates after the transplant are good, but there still are some risks. Just because we have this good news, don't think that we are out of the woods. A transplant is a very big ordeal. You are basically bringing the human body to the brink of what it can handle, and back. Yossi Chaim and I watched a video yesterday follow some survivors through their transplant, and it helped him to understand a lot of what is going to happen. He is actually excited about it. I guess that he knows that this is one of the final steps to make him better. Well, even though I am very afraid for the future, I am still very hopeful, and feeling very confident.
Yossi Chaim has been thinking of what he wants from Make A Wish. He is leaning towards his own personal state of the art computer, printer, and scanner. I think that he loves the idea that it would be in his room, and be HIS! We'll see... I'll let you know what he decides.
Today, the confirmation class of Congregation Or Atid sent over a carpet for Yossi Chaim's room. Now when he builds his Lego creations, he doesn't have to sit on the cold floor. (This will certainly come in handy now that it has started to get cold here!) Thank you so much to all the families who helped to organize this, as well as the kids who had the car wash. There is really no way to thank EVERYONE who has been so kind to all of us, and helped us in so many ways.
Keep doing good deeds, praying, and giving charity in the name of Yosef Chaim ben Briendle Leah.
Dec. 14, 1997
Well, Yossi Chaim had a low grade fever Thursday night, Firday night, and again Sat. night, so guess where we are? That's right, we are back at the hospital. The most ironic part of all this is that Yossi Chaim feels pretty good, Thank G-d. Right now he is getting IV antibiotics, and if nothing grows on the cultures, and he doesn't spike any fevers, he can go home Monday night or Tuesday morning.
His counts have bottomed out, and seem to be on the way back up. We are going to wait until they come all the way up, and then do another bone marrow aspirate. It will probably be either this Friday, or next Monday. Then, the Hem-Onc docs will get in contact with the transplant team. If the donor is available, we could move to transplant in another week or two after that! If the donor isn't available until after the holidays, he will get one more round of chemo. What he actually gets depends on how much luekemia is left.... Maybe he will even be in remission!
BTW, guess who had to learn how to give Yossi Chaim his CGSF? That's right, me! He hated to get this as a shot, which Michoel learned how to do, so he keeps his needle in his port, and we do it together. (GCSF is a drug that helps his white blood count recover quicker from the chemo.) First we flush his port, and he tries to get a blood return (pulls back on the syringe to see if there is blood there). Then he flushes it with saline and then glucose. I push the CGSF in, as well as the next flush, and he finishes up with the 2 last flushes. He also gets everything ready, and cleans it all up! He really enjoys taking care of himself this way.
Keep doing good deeds and giving charity in the name of Yosef Chaim ben Briendle Leah, as well as KEEP ON PRAYING!
Dec. 17, 1997
Yossi Chaim came home last night. Chanie woke up in the middle of the night, and had poop up to her neck. Changed her, and put her back into bed. She refused to lie down, and then THREW UP!!! (She throws up every time Yossi Chaim comes home.... hmmmm ....) Cleaned up her bed, gave her a bath, and who comes out of his room looking bright red--Yossi Chaim. Do I need to tell you he had a fever of 103? And that stupid port was hurting him. (It had been hurting him for 2 days already. Long story, but at one point, I made them pull the needle out, and at another, he pulled it out himself!) Called the doc, but she said we could stay home if I watch the fever. This morning he went to clinic, and long story short, his port had a clot in the end! AND.... he has an infection in the skin around the port. Dumb nurse didn't put the needle in all the way, which is why he got the infection, and why it was burning yesterday. He needs IV antibiotics. We are having the nurse come to the house tomorrow. Friday we are doing a Bone Marrow aspirate, and LP. Then he will be admitted for hopefully the last round of chemo. We are going to do 3 days in-patient, and 2 days out-patient.....hopefully we'll be home for Chanukah!!! HURRAY! I was getting worried about this.
The donor had his interview, and they are going to do the exaiminations on Dec. 31. They are still planning to do the transplant early to mid Jan. BTW, there was one more donor who came up 6/6, and they are waiting still for 2 more people to give their blood.
Dec. 20, 1997
Dec. 25, 1997
Hello, and Happy Chanukah everyone! I realized that I forgot to tell you all that Yossi Chaim was allowed to go to the Chanukah carnival at school last Wed. (Dec. 17). He had such a wonderful time. He had a wear a mask the whole time, but he didn't care. (It was really nice that one of Yossi Chaim's closest friends also put a mask on the whole time Yossi Chaim was at school.)
We did the first 3 days of this round of chemo in-patient, and the last 2 days out-patient. Then, the first night of Chanukah, Yossi Chaim had a sleep over. (Last year, I didn't make him a birthday party. This year I keep putting it off, and finally, in the summer, I promised him a sleep over after all the holidays. Unfortunately, he got sick. Infact, one of the first things he said when we told him how sick he was, was "Great, now I don't get to have my sleep over." Since he will be having his transplant in Jan, please G-d, I wanted him to have his party before.) So, Yossi Chaim had 5 friends come sleep over. They had a wonderful time. I made him a cake with Wallace lighting the menorah. (I stuck the candles in the menorah!) Then, he opened his presents. He was acting just like his old self. It was so great. Laughing, and cracking jokes!!! They watched 2 Wallace and Gromit videos, and believe it or not, they all went to sleep!!! I was in shock! I really thought that they would stay up to day break. ...But, they got up at 7:30, and watched Jumanji. (We gave it to Yossi Chaim as a remission present.) The kids ate breakfast, and then proceeded to run around the house, and go bezerk for a short while, including Yossi Chaim. I very quickly put a stop to that! They played dreidle, and then everyone went home. Yossi Chaim had such a blast.
Today Yossi Chaim is planning on going to a friends house. He said that he "feels normal". This is the best Chanukah present of all.
Keep praying for Yosef Chaim ben Briendle Leah.
Dec. 31, 1997
Yossi Chaim went back to the clinic today for a check of his counts. (Thank G-d, they are on the way back up already.) He feels great. He's been playing, and basically behaving the way a normal child should. We got to go up to the transplant unit, and he got to see the room that he is going to have. He will have an exercise bike in his room, as well as a Nintendo machine. They have TVs and VCRs in every room, and an extensive movie collection. Yossi Chaim is sooooo excited about the transplant!!! He has such a postive attitude. He is convinced that this will cure him. Today I had a talk with him, and he knows that he will be ok. I am so happy that he has this attitude. I've felt for a while that he needs to "cure" himself. He said that he hopes that he won't get GvHD (Graft VS. Host Desease). He wants to picture his body accepting the donor marrow, and not fighting it.
The donor went today to have a physical exam. (If you know someone who is a 44 year old male who had a physical today to be a bone marrow donor, TELL ME!!! We are not allowed to know who the donor is until a year after the transplant.) We won't have the results for a while. (That is why they are planning to have the transplant mid to late January.)
As of right now, things look like a go for Disney World. Yossi Chaim is VERY happy about this. He has already started to plan what he is going to take! He is a little nervous, asking me what he will do if he gets a fever. But I am confident that it will be fine, especially since his counts are going up.
I met with transplant team yesterday to talk about food- obtaining and preparing it! On top of keep both Kosher and Cholov Yisroel (an extra stringency for the dairy products). They are going to try and obtain foods that he will eat, but I am really worried about the food preparation. I have to work out the details of who is actually going to cook it all. (In a way, I feel like I am worrying about "normal" things.) I am also VERY worried about what is going to happen to my 2 little ones (and one big one) while he is in the hospital. I will need to sleep there almost every night, but who will watch them? I feel guilty to have someone come into the house to watch them. I have always stayed home to be with my kids part-time. I love them dearly... this is part of the reason I decided to stay in Richmond.
Keep praying for Yosef Chaim ben Briendle Leah. The big day is coming closer.........
I need to see the old updates from October.
I need to see the old updates from November.
Take me back to Yossi Chaim's very own Home Page.