Last Day Before Admission
Lisa finished with her harvest yesterday!! We went in to Jeanes Hospital for an orientation at 2:00, and Lisa was just finishing her apheresis at that time. She started at about 8:30 and went until about 2:00 in the afternoon, making it about 5 ½ hours, but they got the 5 million stem cells they wanted. Although she had a little bit of a headache and upset stomach, I’m glad she didn’t have to stay for a third day of harvesting. She got her appetite back yesterday evening and is feeling much better this morning.
The orientation was very nice for many reasons. Besides Jody, all of our children, and Lisa, there were three other families there. One group comprised the parents and girlfriend of someone who is facing an autologous transplant to treat ALL (Acute Lymphoblastic Leukemia). The patient was not at the orientation because he was undergoing chemotherapy for his leukemia. There was a couple from the Scranton area who are facing a allogeneic transplant for the husband, with his sister being the donor. He has AML (Acute Myelogenous Leukemia) and has been undergoing chemotherapy since about March to treat it and will be going in for his transplant on August 26th, I believe. They have 3 small boys (5, 3, and < 4 months?) and seemed like a really nice couple. We’ll probably see them again when he comes in for his transplant. The other couple was one who has been through the ordeal. The husband had an allogeneic transplant with a matched unrelated donor in April of 2003 to treat ALL and is still fighting GVHD, although he was not wearing a mask or anything. It was nice to hear the experiences of a patient and caregiver who have been through this. People who have or are going through this seem amazed that I have had no chemotherapy or transfusions thus far and I’m about to undergo the transplant.
We learned many other useful things including very practical things like what to bring to the hospital, hospital visitation limitations, home care, etc. It seems like a really nice set up which they said to think of like going to live in a hotel room for a month. Patients can pretty much wear what they like, set up their rooms the way they like, bring whatever they want (with some restrictions). Apparently the days of chemotherapy are not as bad as I had pictured. It is true that the chemotherapy is devastating in the way it kills all kinds of good and bad cells in the body, including the bone marrow. However, they said that many patients still feel pretty good after a week and have been prepared for the transplant. It is after that when things get worse with blood counts (especially the white blood count) plummeting. Hair loss occurs about 2 weeks after start of chemotherapy.
Visitation rules are not terribly restrictive. There are only 2 or 3 visitors allowed in the room at a time, partly because more would tax the air filtration systems. People who are sick and small children should not visit. All visitors must wash their hands and don a mask before entering the patient’s room. The visiting hours are listed as 11:30 AM (doctors are doing rounds earlier than that) to 11:30 PM, but I don’t think that they throw people out even then. Visits will be coordinated and scheduled by either Jody or Seth.
Our meals are prepared specially and served before those for other patients in the main hospital because of wanting to minimize risk of bacterial, fungal, or viral contamination. This means we eat all our meals early. Flowers and plants are NOT allowed and balloons are discouraged. The snail mail address is:
(Patient Name)
5th Floor / BMT Unit
Jeanes Hospital
7600 Central Avenue
Philadelpha, PA 19111
One of the main reasons I like the orientation was because of the way it added to my feelings of confidence and determination that I will get through this and will get better. It was reassuring to hear them say that engraftment will occur about Day +6 (I can’t remember the number but the Day numbers are relative to the transplant day, so tomorrow when I go in, it will be Day -7), white blood cells will be produced first, you will go home when the following conditions are met, etc. It helps me think that these things will happen.
I heard from my dermatologist who said my tests for systemic Lupus all came out negative. It was what he expected, but it still good to know, although even if there was SLE, one of the treatments for it is a bone marrow transplant.
From this point on, I’m guessing updates to this blog will be more frequent because I’ll have more to report. So stay tuned if you want to know what’s going on. Thanks again to all of you for your support thus far.
With love …
The orientation was very nice for many reasons. Besides Jody, all of our children, and Lisa, there were three other families there. One group comprised the parents and girlfriend of someone who is facing an autologous transplant to treat ALL (Acute Lymphoblastic Leukemia). The patient was not at the orientation because he was undergoing chemotherapy for his leukemia. There was a couple from the Scranton area who are facing a allogeneic transplant for the husband, with his sister being the donor. He has AML (Acute Myelogenous Leukemia) and has been undergoing chemotherapy since about March to treat it and will be going in for his transplant on August 26th, I believe. They have 3 small boys (5, 3, and < 4 months?) and seemed like a really nice couple. We’ll probably see them again when he comes in for his transplant. The other couple was one who has been through the ordeal. The husband had an allogeneic transplant with a matched unrelated donor in April of 2003 to treat ALL and is still fighting GVHD, although he was not wearing a mask or anything. It was nice to hear the experiences of a patient and caregiver who have been through this. People who have or are going through this seem amazed that I have had no chemotherapy or transfusions thus far and I’m about to undergo the transplant.
We learned many other useful things including very practical things like what to bring to the hospital, hospital visitation limitations, home care, etc. It seems like a really nice set up which they said to think of like going to live in a hotel room for a month. Patients can pretty much wear what they like, set up their rooms the way they like, bring whatever they want (with some restrictions). Apparently the days of chemotherapy are not as bad as I had pictured. It is true that the chemotherapy is devastating in the way it kills all kinds of good and bad cells in the body, including the bone marrow. However, they said that many patients still feel pretty good after a week and have been prepared for the transplant. It is after that when things get worse with blood counts (especially the white blood count) plummeting. Hair loss occurs about 2 weeks after start of chemotherapy.
Visitation rules are not terribly restrictive. There are only 2 or 3 visitors allowed in the room at a time, partly because more would tax the air filtration systems. People who are sick and small children should not visit. All visitors must wash their hands and don a mask before entering the patient’s room. The visiting hours are listed as 11:30 AM (doctors are doing rounds earlier than that) to 11:30 PM, but I don’t think that they throw people out even then. Visits will be coordinated and scheduled by either Jody or Seth.
Our meals are prepared specially and served before those for other patients in the main hospital because of wanting to minimize risk of bacterial, fungal, or viral contamination. This means we eat all our meals early. Flowers and plants are NOT allowed and balloons are discouraged. The snail mail address is:
(Patient Name)
5th Floor / BMT Unit
Jeanes Hospital
7600 Central Avenue
Philadelpha, PA 19111
One of the main reasons I like the orientation was because of the way it added to my feelings of confidence and determination that I will get through this and will get better. It was reassuring to hear them say that engraftment will occur about Day +6 (I can’t remember the number but the Day numbers are relative to the transplant day, so tomorrow when I go in, it will be Day -7), white blood cells will be produced first, you will go home when the following conditions are met, etc. It helps me think that these things will happen.
I heard from my dermatologist who said my tests for systemic Lupus all came out negative. It was what he expected, but it still good to know, although even if there was SLE, one of the treatments for it is a bone marrow transplant.
From this point on, I’m guessing updates to this blog will be more frequent because I’ll have more to report. So stay tuned if you want to know what’s going on. Thanks again to all of you for your support thus far.
With love …
3 Comments:
Hi Justin,
Out of sight, definitely not out of mind. My thoughts and prayers are with you and your amazing family at this time.
Love,
Kirsten in Raleigh
Hey Justin,
Glad this part of the journey has begun for you. Our prayers and good vibes are coming your way. We appreciate the info and are grateful to know something about your process. We feel full confidence and wish you every blessing.
Love,
Kaye and Jay
Hi Justin, Just checking in.Glad to see all is going so well.We will continue to send our healing thoughts to you and your family.
Love,
Mary McCollum
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