We will be seeing our doctor today. He had rounds at the hospital so we saw the nurse practitioner the last two weeks. The nurse practitioners are fabulous but there are still a lot of things they can't answer until conferring with the doctor. I have many questions today.....have I mentioned that Thursday is Day +100?
Steven's Saturday was not great. Luckily he feels much better today. You never really know why he feels nauseated/exhausted, it's just part of the process. We also have an appointment with the endocrinologist after being lectured on nutrition and diet last month. They have assured us the increased glucose is medication related, but the guidelines are good reminders for healthy eating. I commend COH because they really do treat the whole person, not just the disease. I will remind the endocrinologist that Thursday is Day 100, just in case he needs to know…
Labs are back and counts are all down. Steven will receive his first shot of Neupogen. He knows more about it than his doctor does since he did antibody testing on it when he was at Amgen. This drug encourages the bone marrow to produce more white blood cells. The crazy nausea is probably due to GVHD. His Tacrolimus and Serolimus (anti-rejection) levels are low so they don't want to decrease them further. We will manage his symptoms and check levels next Tuesday.
The only thing that will change is we were given our doctor's blessings to go to clinic once a week. The caveat is if Steven is uber tired at the end of the week (HGB is 8.0), we may need to return for a unit of blood. It's good to be flexible...
Wednesday, January 13, 2016
Tuesday, January 12, 2016
Countdown to +100 Days!
It's Friday and we are waiting for clinic. He is already scheduled for a unit of blood based on Tuesday's labs. Next week, Thursday to be exact, is our +100 Day benchmark. I want to ask (more like press) what might change at 100 days. My top 2 questions are: do I still have to dip kitchenware in bleach water and do I still have to wipe the dog off every time she comes in from the outside? I think Steven's top 2 are: can I ditch the mask and can we go to Disneyland? I already know the answer to the second question but it's always fun to see their faces when we ask.
HBG is 7.6, good call to order a unit of blood on Tuesday. Steven's triglycerides are now elevated due to the meds so we get to take another medication. It's good to have something else to think about..... Other than that, labs are to be expected, notice I didn't say they are wonderful! We have lowered our expectations and have become more patient with the process. Platelets are still in the normal range, WBC's have again dropped but no one is concerned so I guess it's all good.
We are in the infusion room waiting for the unit of blood to arrive from the blood bank. Steven will be getting another designated donor O+ unit of blood! Thank you thank you!
HBG is 7.6, good call to order a unit of blood on Tuesday. Steven's triglycerides are now elevated due to the meds so we get to take another medication. It's good to have something else to think about..... Other than that, labs are to be expected, notice I didn't say they are wonderful! We have lowered our expectations and have become more patient with the process. Platelets are still in the normal range, WBC's have again dropped but no one is concerned so I guess it's all good.
We are in the infusion room waiting for the unit of blood to arrive from the blood bank. Steven will be getting another designated donor O+ unit of blood! Thank you thank you!
Friday, January 8, 2016
Day +77-Day +90
We survived the holidays! We were blessed to have our kids here and they were a tremendous help. They put up our outside lights and then took them down along with our artificial tree (still no plant material allowed in the house). Everything got packed away and put in its place. I emphasize this because normally Steven and I do this task. The kids really stepped it up and helped with cooking meals and taking Steven to his COH appointments. A few things went by the wayside but nothing catastrophic. It's interesting what becomes important when going through a major health challenge.
We also got away with only coming to clinic once during Christmas week and once during New Years week. We were hoping that trend would stay but not the case....not yet anyway.
Both Tuesdays Steven got a unit of blood, designated donor blood from the blood drive!! They were both O+. He is still typing as B+ but either he has weird antibodies or the B+/B- units have antibodies. Either way we are eternally grateful to everyone who has donated for Steven.
It's a zoo today, the Tuesday after New Years and it's raining (actual rain). Steven's HGB is 8.1, not quite low enough for a unit of blood. We will be back on Friday because he will need a unit of blood. We are getting close to our +100 Day benchmark and asked the nurse practitioner what can we look forward to. Everything is prefaced with, "well we will have to ask Dr. Nathwani.....". I get this. Healthcare isn't going to promise you the world and then have to back off of those promises. They would rather give you a tidbit and build on that. Honestly, we know things will loosen up at some point. We have gotten this far and followed the rules, we aren't going to blow it now.
We did have one change in medication. Steven's RBCs are still nonexistent so they have decreased one of the anti-rejection medications, Tacrolimus. Instead of 3 tablets twice a day, he is taking 3 in the morning and 2 in the afternoon. It doesn't seem major considering he is still on 15 medications but they are hoping this will give the donor RBC's a chance to increase. We are pretty early in the BMT process so they don't want to decrease the anti-rejection meds too soon or too fast.
We also got away with only coming to clinic once during Christmas week and once during New Years week. We were hoping that trend would stay but not the case....not yet anyway.
Both Tuesdays Steven got a unit of blood, designated donor blood from the blood drive!! They were both O+. He is still typing as B+ but either he has weird antibodies or the B+/B- units have antibodies. Either way we are eternally grateful to everyone who has donated for Steven.
It's a zoo today, the Tuesday after New Years and it's raining (actual rain). Steven's HGB is 8.1, not quite low enough for a unit of blood. We will be back on Friday because he will need a unit of blood. We are getting close to our +100 Day benchmark and asked the nurse practitioner what can we look forward to. Everything is prefaced with, "well we will have to ask Dr. Nathwani.....". I get this. Healthcare isn't going to promise you the world and then have to back off of those promises. They would rather give you a tidbit and build on that. Honestly, we know things will loosen up at some point. We have gotten this far and followed the rules, we aren't going to blow it now.
We did have one change in medication. Steven's RBCs are still nonexistent so they have decreased one of the anti-rejection medications, Tacrolimus. Instead of 3 tablets twice a day, he is taking 3 in the morning and 2 in the afternoon. It doesn't seem major considering he is still on 15 medications but they are hoping this will give the donor RBC's a chance to increase. We are pretty early in the BMT process so they don't want to decrease the anti-rejection meds too soon or too fast.
Tuesday, December 22, 2015
Day +59 - Day + 76
Every week has been the same, two blood draws and 15" clinic visits. The nurses that draw from Steven's Hickman line have been really great. They usually have an interesting fact or words of wisdom. The nurse today said it is actually a good sign when you have signs of GVHD. It indicates the donors cells are strong and will have a good chance of a successful transplant. Steven has a few mild signs of GVHD so I guess it's all good.
We are hoping we don't have to come to COH on Christmas, not that it isn't fun or anything:) Since our usual clinic day is Friday, they will decide today if we can get by with one clinic day.
The labs are back and Steven will definitely be getting a unit of blood today...hopefully from the blood drive! Everything is down again, including WBCs, which we now know is a normal cycle. The first time that happened we were slightly freaked out...in a respectful, professional way :)
Getting a unit today should keep us from having to come back to COH on Friday. It will be the same drill next week, clinic on Tuesday, possible unit of RBCs, no clinic on New Years Day...hopefully.
We left the house at 7am and made super time, got here at 8am. I am reminded of the movie Papillon where Steve McQueen says to the guards, "I'm still here you bastards!". Yep, it is 1:15pm and we are still here. Steven's RBC unit is ready but there are no chairs available for the transfusion. Apparently everyone and their second uncle twice removed is here today to avoid the holiday. We were just asked to go to the HEM Infusion Center. All of you wonderful, gracious people who donated here at COH know exactly where we are at. This is where Steven received his major league chemo the week before he was admitted for his transplant and where the donor center is. We were thrilled to come back over here because they are private rooms versus the clinic area where it is one big room with 6 chairs. It's actually fun to be back here. There was so much ahead of us when we were here last, it's a lot more relaxing to be here again and updating the nurses on how everything went.
The unit has been hung and guess what.....it's a Directed Donor Unit from the blood drive!!!
So awesome!!!! Thank you :)
Hopefully we will leave before rush hour but we are happy to not come back on Christmas Day so no complaints!
Leaving at 3:45pm.....ish :)
We are hoping we don't have to come to COH on Christmas, not that it isn't fun or anything:) Since our usual clinic day is Friday, they will decide today if we can get by with one clinic day.
The labs are back and Steven will definitely be getting a unit of blood today...hopefully from the blood drive! Everything is down again, including WBCs, which we now know is a normal cycle. The first time that happened we were slightly freaked out...in a respectful, professional way :)
Getting a unit today should keep us from having to come back to COH on Friday. It will be the same drill next week, clinic on Tuesday, possible unit of RBCs, no clinic on New Years Day...hopefully.
We left the house at 7am and made super time, got here at 8am. I am reminded of the movie Papillon where Steve McQueen says to the guards, "I'm still here you bastards!". Yep, it is 1:15pm and we are still here. Steven's RBC unit is ready but there are no chairs available for the transfusion. Apparently everyone and their second uncle twice removed is here today to avoid the holiday. We were just asked to go to the HEM Infusion Center. All of you wonderful, gracious people who donated here at COH know exactly where we are at. This is where Steven received his major league chemo the week before he was admitted for his transplant and where the donor center is. We were thrilled to come back over here because they are private rooms versus the clinic area where it is one big room with 6 chairs. It's actually fun to be back here. There was so much ahead of us when we were here last, it's a lot more relaxing to be here again and updating the nurses on how everything went.
So awesome!!!! Thank you :)
Hopefully we will leave before rush hour but we are happy to not come back on Christmas Day so no complaints!
Leaving at 3:45pm.....ish :)
City of Hope Blood Drive
A blood drive was held at Holy Cross Catholic Church in Steven's name. Graciously organized by our good friend, it was an amazing event!
We asked Steven's doctor for permission to go. He thought about it and agreed people would most likely be healthy since they were donating blood. I brought Steven thinking he would stay for an hour or two... I was going to take him home and come back to thank everyone. This was actually the first time Steven went anywhere besides City of Hope since September.
We talked to so many people we knew and haven't seen in so long, it was awesome, almost like a reunion. I was amazed at the people we didn't know who were there to donate. We both have donated blood so many times, but didn't think about people doing it for us.
Before you knew it, we were there almost the entire blood drive! We were free to do normal things like talk to people outside of our home...what a concept! I really didn't fully appreciate that time until now. Steven was exhausted but being there with all of you lifted his spirits.
The City of Hope crew was fantastic! Our utmost gratitude to Holy Cross Church, our wonderful and supportive Monsignor, and our amazing friend and organizer of the drive. We know it was a lot of work and appreciate everything that was done to make it happen. And what about all the people who came to donate!!!! It's an uber busy time of the year and 75 people signed up to donate.
We are humbled and honored for the outpouring of support. City of Hope received 60 usable units. Those that Steven can use will be set aside in his name with the rest going to grateful City of Hope patients. And believe me, none will go to waste! It really is the gift of life. Thank you, thank you, thank you!!!
We asked Steven's doctor for permission to go. He thought about it and agreed people would most likely be healthy since they were donating blood. I brought Steven thinking he would stay for an hour or two... I was going to take him home and come back to thank everyone. This was actually the first time Steven went anywhere besides City of Hope since September.
The City of Hope crew was fantastic! Our utmost gratitude to Holy Cross Church, our wonderful and supportive Monsignor, and our amazing friend and organizer of the drive. We know it was a lot of work and appreciate everything that was done to make it happen. And what about all the people who came to donate!!!! It's an uber busy time of the year and 75 people signed up to donate.
Friday, December 11, 2015
Day +56 - Day+58
12/5/15-Blood draw, clinic with nurse practitioner, endocrinologist.....Steven will need another unit of blood today. That's two this week. The iron chelating medication has to be mailed from a pharmacy in east LA. I think I mentioned to a couple of people that I won't be picking it up....I have my limits!
12/8/15-Sickness brings out the best and the worse in people. This covers parking, waiting in line, waiting for their blood to be drawn, waiting for their clinic appointment,...did I mention waiting? Even though there is a sign asking people to not enter COH if they have a runny nose, cough, fever, flu or cold, the number of people that enter anyway has to be high. I shouldn't be so judgmental right??? They probably all have allergies.... I feel like I need to be autoclaved when we leave to go home.
It was so great having my sister here. She cleaned, cooked, did laundry, basically if it needed to get done it got done! The kids start coming home in less than a week for Christmas so reinforcements will be here again soon.
12/8/15-Sickness brings out the best and the worse in people. This covers parking, waiting in line, waiting for their blood to be drawn, waiting for their clinic appointment,...did I mention waiting? Even though there is a sign asking people to not enter COH if they have a runny nose, cough, fever, flu or cold, the number of people that enter anyway has to be high. I shouldn't be so judgmental right??? They probably all have allergies.... I feel like I need to be autoclaved when we leave to go home.
It was so great having my sister here. She cleaned, cooked, did laundry, basically if it needed to get done it got done! The kids start coming home in less than a week for Christmas so reinforcements will be here again soon.
Friday, December 4, 2015
Day +52-Day +55
The bone marrow results indicate there are no reticulocyte or erythrocyte precursors in the bone marrow....meaning the ABO incompatibility issues continue. Even though Steven was plasmaphresed while at COH, there is still a war going on and until the GVHD drugs are decreased, his RBC's will continue to be low. Needless to say he will be receiving a unit of blood today! The blood drive in a couple of weeks is coming at a perfect time!! He will also need to be on an iron chelating agent since it looks like he will be getting blood regularly. The doctor said the decreased RBCs will take 3-6 months to turn around. Steven is so early in the process (I feel like we have been doing this forever) that they won't consider lowering his GVHD drugs for a few months., Like I said early on, this is a marathon not a sprint. His WBC's have increased and his platelets are still normal so that is good news!
The kids are gone but my sister is here from Illinois. She didn't get to my house until noon and has already vacuumed, dusted and planned dinner....it's good to have reinforcements!! More fun on Friday. We see the nurse practitioner and the endocrinologist after our regular appointment.
The kids are gone but my sister is here from Illinois. She didn't get to my house until noon and has already vacuumed, dusted and planned dinner....it's good to have reinforcements!! More fun on Friday. We see the nurse practitioner and the endocrinologist after our regular appointment.
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