Van has three possible bone marrow matches (which are giving stem cells instead of marrow) but many have asked how they could sign up to save a life. We know of at least one person on our Hospital floor that still can’t find a bone marrow match and is receiving ongoing Chemo until they do. This is how you can be a bone marrow donor. Please go to:
http://www.marrow.org
Click on “Join the Registry”
Click “Join now”
My friend went to the web-site and registered and this is what she said about it:
“I went to the website and registered. I will be sent a kit for a cheek swab and then send it back in for testing. It took about 30 minutes to do the online registration. Post on your blog to have people go there and register. The kit is normally $52.00 but the promotional code waived the fee.”
I put in Tooele’s Zip code and searched for 200 miles and it said, “Currently there are no donor registry drives publicly listed in your area so you will need to sign up on-line.”
These are the 5 things that are necessary before you can proceed:
Age: I am between the ages of 18 and 60.
Health: I am in overall good health and meet medical guidelines.
Commitment: I am willing to donate to any patient in need and I understand the donation process.
I live in the United States or Puerto Rico: If you live outside the United States or Puerto Rico, please contact a donor center in the country where you live.
I am not in the U.S. military: If you are in the U.S. military, please contact the C.W. Bill Young Marrow Donor Center in Kensington, Md., to join the Registry.
I have not already joined: Be The Match Registry is the new name for the National Marrow Donor Program (NMDP) Registry. Whether you joined the NMDP Registry or Be The Match Registry, in person or online, you are part of the same registry. If you have already given a blood sample or cheek cell sample to be tested for the registry, you do not need to join again. If you're not sure whether you've already joined, you can call us at 1 (800) MARROW-2 (1-800-627-7692).
Update: Van was so miserable this morning it was hard to sit up and partake of the sacrament let alone keep his eyes open. I hummed lots of hymns, prayed together or I prayed for him and we read the scriptures together. I asked him which particular scripture he would like me to read and he said, 2 Nephi 4. I start reading the chapter heading, “Lehi counsels and blesses his posterity. He dies and is buried. “ I stopped right there and said, I’m not going to read this chapter! He said to continue so I did, “Nephi glories in the goodness of God to him. Nephi puts his trust in the Lord forever.” He wanted me to read about putting his trust in the Lord forever. At this point, I decided if the nausea medicines aren’t working and Roxycodone and Benadryl put him out last night then why couldn’t we just do that for him today? He went to sleep after that and only woke up once to ask me to email something to the Stake Presidency. At least he is finally resting peacefully. They are going to help him rest again tonight and take him off his Chemo. We are hoping by tomorrow afternoon he will be feeling better. He will also get a scan of his gallbladder and liver to make sure they aren’t the problem. Here is hoping for a happy and awake tomorrow.
Sunday, January 31, 2010
Saturday, January 30, 2010
Dito (same as yesterday)
Things haven’t changed. Everyone is trying to help figure out all the nausea Van is experiencing. One theory is he has a gallbladder problem and will get an ultra sound on Monday. Another theory is the Chemo drug could be causing it but if they have to change drugs they might have to use a higher dose of another drug and add major chemo to it which would weaken his state which could cause a more difficult time with the stem cell transplant. There are many other theories but these are the top two. He just tries to do everything they say like eating just a little bit but he’ll throw it up. Or not eat and take three different nauseas medicines at one time including “The drug that must not be named” and still throw up. It’s so sad because he just wants to get better and feel normal. One good thing is his spinal headache is finally gone.
I wanted to give you more info on being a bone marrow donor but I just received some more info in the mail and I feel like I need to verify it next week before I publish it. Thanks for being patient.
I wanted to give you more info on being a bone marrow donor but I just received some more info in the mail and I feel like I need to verify it next week before I publish it. Thanks for being patient.
Friday, January 29, 2010
Van is still in hospital; Wendy feeling better each day.
Written by Nancy (Wendy's sister)
This has been a up and down day. Wendy is feeling better each day. She will have energy and then need to lie down every few hours. And then she's back up with energy. She even showers before the afternoon! :)
Van has a different story. Van had a bad day. He is boggling the doctors with being so nauseated. Today he wasn't able to keep down medicine. The nurse said in his four years of being a leukemia nurse, he hasn't seen anyone as nauseated as Van. They suspect a blockage so they took a x-ray of his stomach and insides. The results haven't come back yet.
Wendy is spending the night with Van at the hospital. She didn't have a computer, so she will update more tomorrow.
This has been a up and down day. Wendy is feeling better each day. She will have energy and then need to lie down every few hours. And then she's back up with energy. She even showers before the afternoon! :)
Van has a different story. Van had a bad day. He is boggling the doctors with being so nauseated. Today he wasn't able to keep down medicine. The nurse said in his four years of being a leukemia nurse, he hasn't seen anyone as nauseated as Van. They suspect a blockage so they took a x-ray of his stomach and insides. The results haven't come back yet.
Wendy is spending the night with Van at the hospital. She didn't have a computer, so she will update more tomorrow.
Thursday, January 28, 2010
Stem Cell Transplant
This morning I was lagging and not quite myself. I got the hospital to see Van and I was a little weak so I laid in his bed with him while we waited for our Doctor's Visit. Van was so embarrassed (I'm still not sure why) and our nurse took a picture to sent it to our daughter Nicole. I thought I would share it with you.
We were told that they haven’t seen a Chronic Leukemia patient that has gone straight to blast phase in over 13 years. Usually Chronic patients don’t even have to come to the hospital because they can be controlled by medicine for years. So they meet as a team of doctors and figure out what would be best for him. It changes daily. He is truly in the experimental phase and on the cutting edge. The doctor told us that years ago there was only a 30% chance of survival but after his many years he knows the percentages have gone up but there is no data concerning Van condition. So we will just pray and have faith.
Everyone keeps asking about the Leukemia in Van’s spinal fluid. Last weeks spinal tap came back negative but they are doing a spinal tap chemo radiation every week and they think it will sneak into his fluid at one point. But then they will just kill it so it doesn’t really matter.
He is still in the hospital trying to see if the chemo tablets will interact with his anti-fungal drug so they are giving him the anti-fungal drug by I.V. and the other one by mouth. We should know tomorrow if he is going to have a reaction. They gave him some headache medicine this morning and he threw it up, so we are hoping it was just because it was on an empty stomach.
Van will need an Allogeneic Stem Cell Transplant procedure instead of a Bone Marrow Transplant. They are pretty much the same thing except the Bone Marrow is like a seed you plant in a garden and the Stem Cell is like a seedling plant you plant in the garden. So the Stem Cell would give him the best and quickest results. The Doctor just reminded us again that it could be 8-10 weeks before the transplant could be set up but the chemo drug might stop working in the mean time, which means he would have to have major Chemo for a longer period of time which isn’t good because he won’t be as strong. Two weeks before the transplant he will go into the hospital and have six days of radiation, 2 days of Chemo, one day of rest, etc. Then he will be in the hospital a minimum of 6 weeks, then move to a condo for a minimum of two months but knowing that any of this could change if he has any side-effects to any of the medicines or transplant which is highly likely. At this point they are able to predict if he will have a higher likelihood of being cured. They said if he lives five years then he should live 20 years. It looks like we have a roller coaster ride to go on for a while. Thanks for coming on that ride with us.
I'm feeling a lot better this afternoon than I did this morning. I'm happy and back to my cheerful self. I just have to sit or lay down every few hours. But who doesn’t after surgery. I’m preparing to tell everyone tonight how to become a bone marrow/stem cell donor. Thanks for hanging in there with us. We love you all.
We were told that they haven’t seen a Chronic Leukemia patient that has gone straight to blast phase in over 13 years. Usually Chronic patients don’t even have to come to the hospital because they can be controlled by medicine for years. So they meet as a team of doctors and figure out what would be best for him. It changes daily. He is truly in the experimental phase and on the cutting edge. The doctor told us that years ago there was only a 30% chance of survival but after his many years he knows the percentages have gone up but there is no data concerning Van condition. So we will just pray and have faith.
Everyone keeps asking about the Leukemia in Van’s spinal fluid. Last weeks spinal tap came back negative but they are doing a spinal tap chemo radiation every week and they think it will sneak into his fluid at one point. But then they will just kill it so it doesn’t really matter.
He is still in the hospital trying to see if the chemo tablets will interact with his anti-fungal drug so they are giving him the anti-fungal drug by I.V. and the other one by mouth. We should know tomorrow if he is going to have a reaction. They gave him some headache medicine this morning and he threw it up, so we are hoping it was just because it was on an empty stomach.
Van will need an Allogeneic Stem Cell Transplant procedure instead of a Bone Marrow Transplant. They are pretty much the same thing except the Bone Marrow is like a seed you plant in a garden and the Stem Cell is like a seedling plant you plant in the garden. So the Stem Cell would give him the best and quickest results. The Doctor just reminded us again that it could be 8-10 weeks before the transplant could be set up but the chemo drug might stop working in the mean time, which means he would have to have major Chemo for a longer period of time which isn’t good because he won’t be as strong. Two weeks before the transplant he will go into the hospital and have six days of radiation, 2 days of Chemo, one day of rest, etc. Then he will be in the hospital a minimum of 6 weeks, then move to a condo for a minimum of two months but knowing that any of this could change if he has any side-effects to any of the medicines or transplant which is highly likely. At this point they are able to predict if he will have a higher likelihood of being cured. They said if he lives five years then he should live 20 years. It looks like we have a roller coaster ride to go on for a while. Thanks for coming on that ride with us.
I'm feeling a lot better this afternoon than I did this morning. I'm happy and back to my cheerful self. I just have to sit or lay down every few hours. But who doesn’t after surgery. I’m preparing to tell everyone tonight how to become a bone marrow/stem cell donor. Thanks for hanging in there with us. We love you all.
Wednesday, January 27, 2010
I’m a new Woman!
I seriously am a new woman! My heart is fixed! The Ablation surgery lasted only two hours and it went absolutely perfect. My heart is calm now and I can walk and talk again. It truly is a miracle! At the beginning of a surgery they try to make the heart race so they can map out your heart. In my case, Dr. Day said it wasn’t difficult to map my heart because mine was already constantly going into the racing mode. He said, “I think you have been in small continuous racing mode for quite some time.” So now I know why I have felt so miserable for the last few weeks. I still can’t believe I went to the Cardiologist on Monday at 4:00 and by today, Wednesday at 2:00 I’m fixed and back home. My only restrictions are no driving for 24 hours, no lifting for 2 weeks, no exercise for a week, and walk every two hours. I like those kinds of restrictions. I think I got right in because I told them my husband has Leukemia and so they gave me anything I wanted.
I’m not a pretty sight, but I’m doing great. I say that because the antiseptic they used was blue, so I have blue dye all over my legs and neck with white bandages. When I told Van about it today he reminded me of the pens he got for his birthday that were in the shape of a syringe that said, “BYU Cougars bleed blue”. He said, “Now we both bleed blue, Honey.” Tomorrow, I can wash it off and take off the bandages just in time for our Bone Marrow Consultation. It’s funny because I have been trying to get to this appointment for three weeks now, but every time I went into the hospital for our consultation, I ended up in the ER and each time they cancelled Van’s appointment. Tomorrow my Mom will drive me to the hospital where we will meet my Dad, who is staying with Van. Dad will tape record the consultation while we will meet with the head doctor.
If you have been reading the blog then you know that two nights ago Van went back to the hospital and was very sick. The Doctors have a plan now. They think his anti-fungal and Chemo are conflicting and the Chemo is building up in his system. They took him off his Chemo for two days, giving him anti-nausea medicine every 8 hours by I.V. and giving him lots of fluids. They are going to teach me how to give I.V. fluids and medicine in his I.V. every 8 hours and I know there is more details, but I forgot. When he told me that, I knew I should have gone to school to be a nurse. With four kids with a rare disease, my problem, and now my husband’s, I should be paid for this, don’t you think? Anyway, I know he’ll be in the hospital for at least one more day, but probably more until they get things figured out. He is having a good day today because he feels like eating and he’s living it up (but it’s only hospital food).
My cousin wrote, “If prayers offered on earth could be seen from the heavens, I think there'd be a solid beam of light from here to there as visible evidence of the many people who love and care about both of you.” I truly feel like there has been a solid beam coming straight to our house. Thanks to everyone.
I’m not a pretty sight, but I’m doing great. I say that because the antiseptic they used was blue, so I have blue dye all over my legs and neck with white bandages. When I told Van about it today he reminded me of the pens he got for his birthday that were in the shape of a syringe that said, “BYU Cougars bleed blue”. He said, “Now we both bleed blue, Honey.” Tomorrow, I can wash it off and take off the bandages just in time for our Bone Marrow Consultation. It’s funny because I have been trying to get to this appointment for three weeks now, but every time I went into the hospital for our consultation, I ended up in the ER and each time they cancelled Van’s appointment. Tomorrow my Mom will drive me to the hospital where we will meet my Dad, who is staying with Van. Dad will tape record the consultation while we will meet with the head doctor.
If you have been reading the blog then you know that two nights ago Van went back to the hospital and was very sick. The Doctors have a plan now. They think his anti-fungal and Chemo are conflicting and the Chemo is building up in his system. They took him off his Chemo for two days, giving him anti-nausea medicine every 8 hours by I.V. and giving him lots of fluids. They are going to teach me how to give I.V. fluids and medicine in his I.V. every 8 hours and I know there is more details, but I forgot. When he told me that, I knew I should have gone to school to be a nurse. With four kids with a rare disease, my problem, and now my husband’s, I should be paid for this, don’t you think? Anyway, I know he’ll be in the hospital for at least one more day, but probably more until they get things figured out. He is having a good day today because he feels like eating and he’s living it up (but it’s only hospital food).
My cousin wrote, “If prayers offered on earth could be seen from the heavens, I think there'd be a solid beam of light from here to there as visible evidence of the many people who love and care about both of you.” I truly feel like there has been a solid beam coming straight to our house. Thanks to everyone.
Tuesday, January 26, 2010
Van in one hospital; Wendy going to another.
{Wendy mumbling with slurred speech lying flat on her back on the bed and Nancy (her sister) translating with an urim and thummim.}
Van is stable in the hospital. He was very dehydrated after throwing up from the chemo. They gave him powerful nausea medicine, a blood transfusion, more antibiotics and are meeting as a team of doctors to discuss his future. At this point, they think they may spread his chemo treatments 8-9 days apart instead of 7 days. They will teach me how to give him IV fluid so I can administer that at home. He is in better spirits and will be there at least through tomorrow. My parents are with Van at the hospital and Van’s parents are at home with me.
I have been taken off my medicine that keeps my heart from racing. I can’t get excited, so I lie flat to keep me calm and relaxed as possible. I only have three hours left until I can take my last sleeping pill which will keep me calm until my surgery. My mom will take me to surgery at 6:00 AM tomorrow morning. It is a one day heart surgery (ablation procedure). They say I will be sore and can’t lift anything for two weeks. I should be able to resume normal activities the next day.
I am counting down the hours to be with Van again.
Van is stable in the hospital. He was very dehydrated after throwing up from the chemo. They gave him powerful nausea medicine, a blood transfusion, more antibiotics and are meeting as a team of doctors to discuss his future. At this point, they think they may spread his chemo treatments 8-9 days apart instead of 7 days. They will teach me how to give him IV fluid so I can administer that at home. He is in better spirits and will be there at least through tomorrow. My parents are with Van at the hospital and Van’s parents are at home with me.
I have been taken off my medicine that keeps my heart from racing. I can’t get excited, so I lie flat to keep me calm and relaxed as possible. I only have three hours left until I can take my last sleeping pill which will keep me calm until my surgery. My mom will take me to surgery at 6:00 AM tomorrow morning. It is a one day heart surgery (ablation procedure). They say I will be sore and can’t lift anything for two weeks. I should be able to resume normal activities the next day.
I am counting down the hours to be with Van again.
Monday, January 25, 2010
Wendy's Good News and Van's Blues
Written by Nancy (Wendy's sister)
Today I stopped by to wish Van a happy birthday. He immediately lit up and showed me all the TRUE BLUE gifts from the day before. Then the next minute he was asleep on the couch. He was pale and weak. Van went to the emergency room tonight with chest pains and dizziness.
Wendy had her cardiologist appointment this afternoon. GOOD NEWS!! She is a candidate for the heart procedure. It is an out-patient routine procedure and has a 99% chance of being successful. AND...she is able to have the procedure done on Wednesday...only two more days!! She is not to take anymore medicine between now and Wednesday except sleeping pills which explains why I am typing for a sleeping Wendy. After the procedure, she isn't to lift anything for two weeks but her heart should be able to handle stress. Wendy was determined to go to the weekly Thursday chemo visit with Van this week and now she can.
Today I stopped by to wish Van a happy birthday. He immediately lit up and showed me all the TRUE BLUE gifts from the day before. Then the next minute he was asleep on the couch. He was pale and weak. Van went to the emergency room tonight with chest pains and dizziness.
Wendy had her cardiologist appointment this afternoon. GOOD NEWS!! She is a candidate for the heart procedure. It is an out-patient routine procedure and has a 99% chance of being successful. AND...she is able to have the procedure done on Wednesday...only two more days!! She is not to take anymore medicine between now and Wednesday except sleeping pills which explains why I am typing for a sleeping Wendy. After the procedure, she isn't to lift anything for two weeks but her heart should be able to handle stress. Wendy was determined to go to the weekly Thursday chemo visit with Van this week and now she can.
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