On Friday, Oct. 31, Michoel and I went to MCV to meet with the transplant team. They were very kind, and answered all our questions. We are still considering going out of state to do the transplant, but there is so much to consider. (We are very concerned about the other children, and how they would feel to be without a mother for anywhere from 3 months to up to a year!)
Just when we returned home, I was paged that Yossi had a fever of 104! (This is very common, especially since his WBC [the guys that fight infection] was down to 100 [that is good news]. However, it is very dangerous.) I quickly packed a bag, and rushed him BACK to the hospital. On the way down there, he told me that he felt like he was blacking out. I actually made it to MCV in ten minutes- doing 75! He was checked and admitted. It was at this point that I realized that I had forgotten my bag that I had packed. (Michoel sent it down to me with food for Shabbos- thank you Patsy!)
Yossi's fever would go down with Tylenol and rise again as the Tylenol wore off. Sat. night it peaked at 105. I was getting scared that he could have a seizure. We thought the fever had broken by early morning, cuz it was down to 99. But all day Sunday, it stayed above 101. The doctors are concerned, and still trying to figure out what type of infection he has.
We had planned on having a quiet Shabbos together.... It seems that G-d had other ideas..... Shauly fell on Shabbos, and cut his head open. Michoel had to take him to the doctor, and then to the hospital (not MCV, where Yossi and I was, St. Mary's) to get 2 stitches. Michoel says that Shauly was very brave, and didn't even cry! And to add even more excitement to our weekend, Chanie had a 103 fever as of five o'clock (EST), and promptly threw up the Tylenol I gave her!
Again, I encourage EVERYONE to donate blood/platelets, and get yourself tested at the same time. (We are exploring the possiblity of a drive.) Keep up the prayers for Yosef Chaim ben Briendle Leah.
Nov. 9, 1997
Well, we finally have received some good news. Last Thursday, they did a spinal tap and a bone marrow. The spinal tap had some white blood cells in it, and there should be none. The doctors were worried that the Leukemia had gotten into his spinal fluid. But they have confirmed that they are regular cells. They still don't know if he has viral meningitis, or if it is his body reacting to the 3 spinal taps he has had.
As many of you are aware, Yossi is still not in remission. We are starting a new round of chemo, and hoping that this will do the trick.
We are also waiting for the testing to be done of the potential donors. (We know that one of them is scheduled to come in on Monday for more blood work, whereever this person may live.)
Yossi's doctors have put in a Rx for blood for Yossi. If you live in Richmond, and have O+, you can donate blood and/or platelets. The number to call is 359-5100. (I think that you need to call to make an appointment.) If you don't live in Richmond, or don't have his blood type, you can still donate blood. Yossi has had at least 4 transfusions, and we would really appreciate it if we could give back what we have taken. (The immediate family is NOT ALLOWED to donate blood, just in case he were to get it. It would do something to his antigens, and possibly mess up his transplant at a later date.)
I can't even begin to tell you all how much your support has meant to our family. Everyone has done so much for us, from the meals, watching our kids, to running errands, the gifts and food, everything!!!! ESPECIALLY THE PRAYERS! "Thank you" doesn't even seem adequate. Thank you all for being there. Keep praying for Yosef Chaim ben Briendle Leah.
Nov. 12, 1997
This illness seems to be a roller-coaster ride. Things look terrible, and then they look good, and then things look bad again. Over this past weekend, Yossi Chaim was very sleepy. On Sunday, he seemed to be a little more awake. He begged me to sleep with him Sunday night. Towards morning, he started to moan in his sleep. I called for the nurse. He was soaking wet, and he was shivering a lot. We cleaned him up, and stuck him on my lap while the nurse changed his bed. I was very concerned, because last week every time he shivered, his fever went back up. When she took his temp., he bit down on the thermometer, and his eyes rolled back in his head. The nurse went to get a doctor. (She thought that he was having a seizure.) We put him back in his bed, and his eyes kind of looked funny. I took a shower, thinking that he was just going to go back to sleep, and the nurse checked in on him frequently. When I got out, his eyes still looked very wierd; the pupils were very dialated. I called for the nurse, and a doctor came in. He also thought that his eyes looked wierd. Pretty soon we had 2 hem-onc doctors, an intern, a nurse-practitioner, and an ICU doctor in the room. They decided to call neurology in. Before they came in, they changed their minds, and decided to move him to PICU to watch him. While I was waiting for them to come back in, his eyes rolled back in his head. I looked at his pupils, thinking that he went to sleep. They were tiny. Just then the nurse-practitioner walked in. She said that he was having another seizure. He was brought over to the PICU, and they did a full work up. The doctors seem to think that this was a severe reation to the chemo drug "ifos". They have discontinued it. Right now they are going to give him some more of the other chemo drugs instead. The doctors are expecting his counts to drop again. (Right now they are starting to come up a little more!)
As of today, he is starting to become more like his old self. We are still having a hard time getting him to eat.
Our doctors have put an order in for blood and platelets. If you are O+, and would like to donate blood, please call Jackie Kahn at (804) 288-3611. She is organizing people to donate both blood and platelets. (The platelets have a very short shelf life of only 5 days. Therefore, we would like people to go every 5 days. The doctors have also asked for 20 units of blood for him, and that has a much longer shelf life [ 42 days, I think!!].)
We would like to again thank everyone for all the prayers and for fasting for a quick and COMPLETE recovery for Yosef Chaim ben Briendle Leah.
Nov. 17, 1997
Well, at long last, after 17 days in the hospital, Yossi Chaim has come home! Last Thursday, he moved out of the PICU, and into his own room. Yesterday, he came home. He basically slept all afternoon, and had some of his favorite foods: fish sticks. This morning, he seems to be happier, and he is eating more! (Soup, fish sticks, and grapejuice.... he eats [and acts] like a pregnant woman.) Keep praying and doing those good deeds for Yosef Chaim ben Briendle Leah! (BTW, don't forget to look at the pictures that my dad took while he was here!)
My mom-in-law took Yossi Chaim down to the clinic today for a blood check. I am so happy that all his counts are great; white blood count is 4100, red blood count is 13, and his platelets are 97,000! Now we just have to sit tight until next Monday when they will do another bone marrow and spinal tap.
Yossi Chaim is eating, and trying to catch up on some of his school work. Yossi Chaim enjoys when his friends come to see him, or call him. Now that his counts are up, he has a little more energy to do more things.
As for me, I've been busy trying to get our life back into order. There's laundry, lunches, and toys to deal with, as well as trying to give the children some attention that they have been missing. (Plus, I've devoted a little time for myself playing my long awaited game, Riven!)
We have been waiting for results of Michoel's second draw (of blood). We found out today that he is only a 4/6 match for Yossi Chaim. We do have 2 people who are 6/6 match, so now we are just waiting to see if he will go into remission.
Keep praying and doing those good deeds for Yosef Chaim ben Briendle Leah!