Saturday, December 31, 2016
Day +407-Day +451
Our last appointment of 2016 went well. All of Steven's counts are good...should be a better holiday than last year. There were so many conflicting feelings this past year...joyous he was home, wondering what was ahead of us, and so many rules... and the cleaning!!! I thought by now we would be at our new normal but not the case. They are still weaning Steven off the immunosuppressants collateral damage from having to change blood types. He is totally off the immunosuppressant, Sirolimus, and is still taking Tacrolimus 1-3x a week. He received more immunizations which puts us in a really good place. We actually got permission to go to Disneyland!....with a mask. I think we are going to wait until Steven doesn't need to wear a mask. It may not sound like a big deal but it's a pain now that he doesn't have to wear one regularly. However, he still wears a mask when he is at City of Hope. Our oncologist is happy with Steven's recovery. Most patients in the first year get readmitted for something (infections, low counts that don't bounce back, etc..). We have much to be thankful for but good riddance to 2016.
Tuesday, November 15, 2016
Day +366 - Day +406
11/4/16-We are off to a rocky start...the phlebotomist had a hard time drawing blood. She left a remarkable bruise which hasn't happened since before Steven had his Hickman line. At clinic, we find out Steven's platelet count has dropped below normal range. Ugh.....our oncologist is concerned so he wants to see us in 2 weeks. His platelets were the first cell line to graft and have been steady in their normal range so we weren't expecting this. Our doctor isn't sure why this would happen so we get to worry about it until our next visit. This doesn't change the vaccination schedule and Steven will receive 5 vaccinations today: Tdap, Polio, HiB, Hepatitis B and Pneumococcal. Steven got a flu vaccination at Walgreens after our last visit so his arms were spared one shot!
All of Steven's tests (chest X-Ray, echo cardiogram, pulmonary function, etc.) look good from last month....a huge relief! Apparently, we were supposed to get an EKG at one year. Not sure what happened but we are scheduled for one when we come back in 2 weeks.
11/15/16-After our last visit, I was wondering if the tramatic blood draw had anything to do with the decreased platelet count. They tagged his specimen as having slight hemolysis. Because we only made our appointment 2 weeks ago, we ended up with a 4:45pm clinic visit. We've never been here this late...like there is no one here! After Steven's blood draw, he got his hair trimmed at the Positive Image Center. We went to the hospital for Steven to get his EKG and arrived at clinic. Mercifully his platelet count is in the normal range again. Our oncologist isn't sure why they were abnormal but we are all grateful they are again in the normal range. The WBC count continues to fluctuate. These new cells are still trying to find their way around and figure out what they should be doing. The scientific reason for this is the fact that Steven is still on immunosuppressants. Once he is weaned off of them completely, the cells should stabilize.
All of Steven's tests (chest X-Ray, echo cardiogram, pulmonary function, etc.) look good from last month....a huge relief! Apparently, we were supposed to get an EKG at one year. Not sure what happened but we are scheduled for one when we come back in 2 weeks.
11/15/16-After our last visit, I was wondering if the tramatic blood draw had anything to do with the decreased platelet count. They tagged his specimen as having slight hemolysis. Because we only made our appointment 2 weeks ago, we ended up with a 4:45pm clinic visit. We've never been here this late...like there is no one here! After Steven's blood draw, he got his hair trimmed at the Positive Image Center. We went to the hospital for Steven to get his EKG and arrived at clinic. Mercifully his platelet count is in the normal range again. Our oncologist isn't sure why they were abnormal but we are all grateful they are again in the normal range. The WBC count continues to fluctuate. These new cells are still trying to find their way around and figure out what they should be doing. The scientific reason for this is the fact that Steven is still on immunosuppressants. Once he is weaned off of them completely, the cells should stabilize.
Saturday, October 8, 2016
Be The Match
After our appointment, we went to the Bone Marrow National Registry, better know as Be The Match. They are the organization that found Steven's bone marrow match. Steven had a letter for his donor. We found out that the rules in Europe are different than here in the US such that we have to wait 2 years, not 1, to ask to have contact with our donor. They pass on letters/cards between donors and recipients.
We came unannounced, something I'm famous for. The woman we talked to is gracious to stop what she is doing and speak with us. It turns out her husband had a BMT 9 years ago, but didn't survive. Her story is one that makes me pause and think about how lucky we are. We made idle chit chat and realized that she too is from the Chicago area. And more unbelievably, she and her siblings were delivered by the physician that Steven's sister worked for! Steven and his family also went to the same doctor...what were the chances of that?
We came unannounced, something I'm famous for. The woman we talked to is gracious to stop what she is doing and speak with us. It turns out her husband had a BMT 9 years ago, but didn't survive. Her story is one that makes me pause and think about how lucky we are. We made idle chit chat and realized that she too is from the Chicago area. And more unbelievably, she and her siblings were delivered by the physician that Steven's sister worked for! Steven and his family also went to the same doctor...what were the chances of that?
Happy Birthday One Year! Day 365
Today is Steven's one year birthday of new life...his bone marrow transplant. It's hard to believe it has been a year. They have quite a day planned for us.
There aren't enough words to thank everyone involved with Steven's recovery. We don't even know where to begin....well, we are starting with Nothing Bundt Cakes for our oncologist and his team and then we plan on going to 6 East with a cake.
Our day is starting with a 7:30am blood draw and then a boat load of tests...a repeat of the same ones he had before his transplant. Blood is drawn and we are off to Pulmonary for a Ventilatory Study at 8am. It is over at the hospital so it's like a cardiac stress test to get there on time...and we are late :) Steven said it went well, way better than a year ago. So far so good. Next stop, Echo cardiogram at 8:45am then a chest X-ray, the last test before clinic with our oncologist. We have a little time to relax...5 minutes! Clinic is on the other side of campus and we can't wait to see what our results are like. If his blood tests look good, Steven will begin his childhood immunizations and get a flu shot as well. Then we can be out with the regular folk. We will find out the other test results at the next visit.
In clinic, Steven's counts look good. His WBC is a little low but nothing earth shattering. His counts look good enough to proceed with immunizations! At 6-12 months post transplant, he can get Tdap (Diphtheria/Tetanus), Polio, HIB (Haemophilus influenza), Hepatitis A, Hepatitis B and Pneumococcal vaccines. They will give him 3 in each arm...ouch! COH didn't have their flu vaccine yet (why is this???). We can wait until our next visit or get it somewhere else.
One more amazing step toward our new normal. I'm so happy he is starting his immunizations. We will come back in a month for more vaccinations, a blood draw and clinic.
We went to 6 East to say hello and thank whoever we could with a Nothing Bundt Cake. I wasn't prepared for my emotions coming out of the elevator. The experience of Steven receiving a Bone Marrow Transplant, so many unknowns, did we do the right thing....all of this came flooding back. I could barely hold it together, especially seeing some of the same nurses we had a year ago. It was wonderful to go back to 6 East but I'm grateful we return on our terms.
There aren't enough words to thank everyone involved with Steven's recovery. We don't even know where to begin....well, we are starting with Nothing Bundt Cakes for our oncologist and his team and then we plan on going to 6 East with a cake.
Our day is starting with a 7:30am blood draw and then a boat load of tests...a repeat of the same ones he had before his transplant. Blood is drawn and we are off to Pulmonary for a Ventilatory Study at 8am. It is over at the hospital so it's like a cardiac stress test to get there on time...and we are late :) Steven said it went well, way better than a year ago. So far so good. Next stop, Echo cardiogram at 8:45am then a chest X-ray, the last test before clinic with our oncologist. We have a little time to relax...5 minutes! Clinic is on the other side of campus and we can't wait to see what our results are like. If his blood tests look good, Steven will begin his childhood immunizations and get a flu shot as well. Then we can be out with the regular folk. We will find out the other test results at the next visit.
In clinic, Steven's counts look good. His WBC is a little low but nothing earth shattering. His counts look good enough to proceed with immunizations! At 6-12 months post transplant, he can get Tdap (Diphtheria/Tetanus), Polio, HIB (Haemophilus influenza), Hepatitis A, Hepatitis B and Pneumococcal vaccines. They will give him 3 in each arm...ouch! COH didn't have their flu vaccine yet (why is this???). We can wait until our next visit or get it somewhere else.
One more amazing step toward our new normal. I'm so happy he is starting his immunizations. We will come back in a month for more vaccinations, a blood draw and clinic.
We went to 6 East to say hello and thank whoever we could with a Nothing Bundt Cake. I wasn't prepared for my emotions coming out of the elevator. The experience of Steven receiving a Bone Marrow Transplant, so many unknowns, did we do the right thing....all of this came flooding back. I could barely hold it together, especially seeing some of the same nurses we had a year ago. It was wonderful to go back to 6 East but I'm grateful we return on our terms.
Thursday, October 6, 2016
T minus 7 days to Steven's One Year Birthday
I'm not where I thought we would be this time last year. When it looked like the stem cells would result in a new immune system, I started thinking how great it would be to take the family to Hawaii at one year and have an open house for our friends to celebrate. Not so fast.... We have come so far but we still have a ways to go. Our oncologist commented on our "set back" due to the red cell aplasia, meaning Steven needing to convert to a different blood type. It was rough and I didn't realize that this part of the bone marrow transplant could have failed. It was dicier than I realized or wanted to realize. That put us behind "in a perfect world". I'm sure the fact that the donor had a different blood type was weighed heavily. We were told there were 3 possible donor matches, our donor being 12 out of 12 but it isn't that simple. No one is really a perfect match because they aren't you. The COH team that Steven has decided on which donor to use, not our oncologist. I would love to know all the mitigating factors involved but I'm sure will not have that opportunity. I reflect that a year ago this time, Steven was going through the hell of chemo called Fludarabine and getting ready to be admitted to City of Hope on 10/3/15. There was so much unknown. We were totally driven by faith and scientific knowledge that we were doing the right thing.
I am eternally grateful that Steven is alive and functioning. Having been in healthcare for 20 years, I know that not every situation ends up favorably. Our one year anniversary is this Friday, 10/7/16, 365 days of education, hope and success.
I am eternally grateful that Steven is alive and functioning. Having been in healthcare for 20 years, I know that not every situation ends up favorably. Our one year anniversary is this Friday, 10/7/16, 365 days of education, hope and success.
Tuesday, July 26, 2016
Day +325-Day +350
09/20/2016-It's been a month. Since then, Steven continues to have a rash and also had a sore throat with cough. We have been trying to get out but the minute someone starts coughing or blowing their nose, I want to send HAZMAT in to take care of any infectious agents. We check in for his blood draw and then go to clinic. Our clinic has been moved to the 3rd floor....the hall is lined with children's drawings. Ugh....pediatrics, so unfair. While I scan the area for any moving petri dishes we check in to our new surroundings, and I'm confused. Steven is the only person in the waiting room with a mask on and I feel we are in the wrong place.
One of the nurses from the CMV study that Steven is in comes to speak with us. She says our part of the study is over. If you'll recall, when Steven was admitted to COH he was approached to participate in a CMV (cytomegalovirus) study. When CMV+, the virus can cause major issue to the BMT patient when it becomes active. Participants were given either a placebo or a vaccine to neutralize CMV. She said the study monitors patients for a year and their data (blood draw and general overall health) is compiled. When the study is over, we want to know what Steven received...morbid curiosity! And of course, we want to read the paper that will be published. We won't know anything before that.
At clinic, our oncologist said our results look pretty good except those pesky kidney function tests, BUN and creatinine. The questions begin, and we think between the hot weather, medications and Pseudophed for the "cold", his kidneys have rebelled. Drink more water. Steven still has the rash on his chest and neck so they want to see us in 2 weeks, which is our one year anniversary. I won't remember all the tests that will be ordered but it includes a comprehensive blood draw, chest X-ray, ECHO, pulmonary function, flu shot and vaccinations! Even though Steven has a mild case of GVHD, they want him to decrease one dose of Tacrolimus each week. The goal was to be off all anti-rejection at one year but that clearly is not going to be the case.
As if this wasn't enough fun, we have an appointment with the endocrinologist. Steven has been continuing to monitor his glucose with daily finger sticks. Our insurance will not support the glucometer we currently have anymore (even though they told us to buy this particular model) so we need to find out which one the endocrinologist will recommend. The Dr. is impressed with Steven's glucose levels and his A1C is just slightly above normal. He concedes that Steven's glucose levels were medication induced and that his body has readjusted. He stated that not every patient's levels return to normal, and struggle with Type 2 Diabetes the rest of their lives. This was pretty important for me to have this stated in his chart. Type 2 Diabetes would have, not only an affect on Steven's health, but would impact our health insurance rates. And the bonus, Steven's fingers get a reprieve and he doesn't have to check his glucose anymore and we do not have to replace the glucometer. We don't have to see the endocrinologist for 6 months, time for his body to adjust after holiday food!
One of the nurses from the CMV study that Steven is in comes to speak with us. She says our part of the study is over. If you'll recall, when Steven was admitted to COH he was approached to participate in a CMV (cytomegalovirus) study. When CMV+, the virus can cause major issue to the BMT patient when it becomes active. Participants were given either a placebo or a vaccine to neutralize CMV. She said the study monitors patients for a year and their data (blood draw and general overall health) is compiled. When the study is over, we want to know what Steven received...morbid curiosity! And of course, we want to read the paper that will be published. We won't know anything before that.
At clinic, our oncologist said our results look pretty good except those pesky kidney function tests, BUN and creatinine. The questions begin, and we think between the hot weather, medications and Pseudophed for the "cold", his kidneys have rebelled. Drink more water. Steven still has the rash on his chest and neck so they want to see us in 2 weeks, which is our one year anniversary. I won't remember all the tests that will be ordered but it includes a comprehensive blood draw, chest X-ray, ECHO, pulmonary function, flu shot and vaccinations! Even though Steven has a mild case of GVHD, they want him to decrease one dose of Tacrolimus each week. The goal was to be off all anti-rejection at one year but that clearly is not going to be the case.
As if this wasn't enough fun, we have an appointment with the endocrinologist. Steven has been continuing to monitor his glucose with daily finger sticks. Our insurance will not support the glucometer we currently have anymore (even though they told us to buy this particular model) so we need to find out which one the endocrinologist will recommend. The Dr. is impressed with Steven's glucose levels and his A1C is just slightly above normal. He concedes that Steven's glucose levels were medication induced and that his body has readjusted. He stated that not every patient's levels return to normal, and struggle with Type 2 Diabetes the rest of their lives. This was pretty important for me to have this stated in his chart. Type 2 Diabetes would have, not only an affect on Steven's health, but would impact our health insurance rates. And the bonus, Steven's fingers get a reprieve and he doesn't have to check his glucose anymore and we do not have to replace the glucometer. We don't have to see the endocrinologist for 6 months, time for his body to adjust after holiday food!
Day +309-Day +324
8/26/2016-Steven has had a rash on his chest, neck and face. Maybe he needs a new razor... :) I'm guessing it is more than that but we shall see. We got a letter from our insurance company saying they aren't supporting the glucometer that we have been using any more. We can continue to use it but they won't pay for any of it. We see the endocrinologist next month and will ask what he recommends. I hope Steven won't have to check his glucose for much longer since his increased glucose levels were medication induced.
The blood draws have been amazingly easy. We were worried his veins would give out with the Hickman gone. Phlebotomy was my least favorite part of being a med tech. I have to compliment the phlebotomy team at City of Hope. They haven't had to stick Steven more than once at his clinic visits.
Steven's counts are pretty awesome...RBC, WBC and platelets are all in the normal range. He has made a point of drinking more water and it paid off. His kidney tests are normal. They were off last month and he was instructed to drink water even if he didn't think he needed any! In spite of this good news, we still have the same restrictions. Our oncologist is reluctant to let us go to a Rams game because it will be flu season and those pesky childhood immunizations are still gone. I asked about the vaccinations and were given a schedule. Looks like we will be able to start them at 1 year post BMT and follow......a baby immunization schedule. What I didn't realize is I can not receive any live vaccines. After receiving a live vaccine, you shed the virus for 8 weeks and Steven can not be exposed. His young immune system is still feeling it's way around a foreign body. And that rash I was mentioning, is graft vs. host disease. A little is ok but they will keep a close eye on it. His new bone marrow is attacking Steven's body and presenting itself as a rash. We can put hydrocortisone on it if it itches and call if it gets worse.
The blood draws have been amazingly easy. We were worried his veins would give out with the Hickman gone. Phlebotomy was my least favorite part of being a med tech. I have to compliment the phlebotomy team at City of Hope. They haven't had to stick Steven more than once at his clinic visits.
Steven's counts are pretty awesome...RBC, WBC and platelets are all in the normal range. He has made a point of drinking more water and it paid off. His kidney tests are normal. They were off last month and he was instructed to drink water even if he didn't think he needed any! In spite of this good news, we still have the same restrictions. Our oncologist is reluctant to let us go to a Rams game because it will be flu season and those pesky childhood immunizations are still gone. I asked about the vaccinations and were given a schedule. Looks like we will be able to start them at 1 year post BMT and follow......a baby immunization schedule. What I didn't realize is I can not receive any live vaccines. After receiving a live vaccine, you shed the virus for 8 weeks and Steven can not be exposed. His young immune system is still feeling it's way around a foreign body. And that rash I was mentioning, is graft vs. host disease. A little is ok but they will keep a close eye on it. His new bone marrow is attacking Steven's body and presenting itself as a rash. We can put hydrocortisone on it if it itches and call if it gets worse.
Day +295-Day +308
Steven has only been decreasing his anti rejection medications 2 days per week but it has been triggering nausea two days after skipping one Tacrolimus pill. The goal is to have him off all anti rejection meds by his one year anniversary. We are wondering when some of the other restrictions will end like no salad bar, no food under warming lights, full cooked beef, no sitting around snotty nosed children, no crowds, no Wildwood hikes (too dusty), no dogs in the bedroom..... We've come such a long way, we have no complaints, just an incredible curiosity of what's next and why.
Assuming there isn't a nasty bout of graft vs. host disease, Steven will decrease his Tacrolimus another day starting this week. He will only take it 4 days a week and we will go for our next clinic visit at the end of the month.
Assuming there isn't a nasty bout of graft vs. host disease, Steven will decrease his Tacrolimus another day starting this week. He will only take it 4 days a week and we will go for our next clinic visit at the end of the month.
Day +265-Day +294
7/26/16-I almost forgot how to get to City of Hope...not really but I had to think about it. It's been a month since we were here last. Steven has been pretty tired since the weekend, which we are hoping is because of the heat. He is working 2 days and wants to add another day.
Besides a change of flora and fauna on campus, the new City of Hope Starbucks has opened. This is a big deal because we might have to start a new tradition when we come here...warm chocolate croissants. Unbelievably, our one year anniversary is coming up soon.
Steven's counts are, for the first time, in the normal range (barely). You would think we could book a trip to Europe but no...that pesty childhood immunity is gone. A victim of being pheresed before his transplant to get rid of as much Anti-A antibodies as possible. And interestingly, you would think that he would have the energy of a 23yo German man but no, the transplant by definition, makes you tired even though your counts are finally normal. The fatigue will go away but for now, not much has changed except the wonderful fact that the transplant was successful.
We must be at an interesting crossroad regarding his anti rejection medication. Our oncologist has been decreasing this medication at a snails pace with no change the last 2 months. Since Steven seems to have stabilized, we are decreasing his Tacrolimus 2 days/week. Usually when they decrease his Tacrolimus or Sirolimus, they decrease it every day. I'm not sure why it is such a gradual decrease but this isn't our transplant team's first trip around the block so again we do as we are told and continue to follow all the rules praying for a favorable outcome.
Besides a change of flora and fauna on campus, the new City of Hope Starbucks has opened. This is a big deal because we might have to start a new tradition when we come here...warm chocolate croissants. Unbelievably, our one year anniversary is coming up soon.
Steven's counts are, for the first time, in the normal range (barely). You would think we could book a trip to Europe but no...that pesty childhood immunity is gone. A victim of being pheresed before his transplant to get rid of as much Anti-A antibodies as possible. And interestingly, you would think that he would have the energy of a 23yo German man but no, the transplant by definition, makes you tired even though your counts are finally normal. The fatigue will go away but for now, not much has changed except the wonderful fact that the transplant was successful.
We must be at an interesting crossroad regarding his anti rejection medication. Our oncologist has been decreasing this medication at a snails pace with no change the last 2 months. Since Steven seems to have stabilized, we are decreasing his Tacrolimus 2 days/week. Usually when they decrease his Tacrolimus or Sirolimus, they decrease it every day. I'm not sure why it is such a gradual decrease but this isn't our transplant team's first trip around the block so again we do as we are told and continue to follow all the rules praying for a favorable outcome.
Day +219-Day +264
6/28/16-Looks like I have some explaining to do! It's been 50 days since I last posted. As you might have guessed, we are feeling a little more normal and have been getting out a little more. That doesn't mean we haven't had to continue our medical journey at City of Hope, it just means the normal is starting to outweigh the medical. I rented a cabin for our family on Father's Day weekend only to find out our youngest had strep throat, that whole weekend. He was diagnosed the day we got back and we immediately called COH to see if Steven needed to be on prophylactic Amoxicillin. His counts are so much better that he has to wait it out like us common folk. If he gets a fever or sore throat, he needs to call. We will bring it up today at our visit...
In May, Steven had two good weeks of nausea triggered by graft vs. host disease. He was popping Zofran's like a drug addict, with not much relief. He had to use the big guns, Ativan, but it made him sleepy. They were concerned enough that we were back to once a week clinic visits. The symptoms subsided and we went to a two week clinic visit and then to three weeks. That's where we are today.
We also saw the endocrinologist last month. Since they have been slowly lowering the anti-rejection medications, Steven's glucose has been decreasing to a normal level on it's own. He was given permission to stop taking Glimepiride to regulate glucose levels. He still has to check his blood glucose but only once a day instead of twice a day. We see the endocrinologist again in 3 months.
I'm grateful the fires in Duarte and Azuza are out. That would have made an already arduous trip to COH even...more fun.
Steven's counts look good enough that we don't have to come back for another month! His hemoglobin and hematocrit just squeaked in the normal range...we will take it!
In May, Steven had two good weeks of nausea triggered by graft vs. host disease. He was popping Zofran's like a drug addict, with not much relief. He had to use the big guns, Ativan, but it made him sleepy. They were concerned enough that we were back to once a week clinic visits. The symptoms subsided and we went to a two week clinic visit and then to three weeks. That's where we are today.
We also saw the endocrinologist last month. Since they have been slowly lowering the anti-rejection medications, Steven's glucose has been decreasing to a normal level on it's own. He was given permission to stop taking Glimepiride to regulate glucose levels. He still has to check his blood glucose but only once a day instead of twice a day. We see the endocrinologist again in 3 months.
I'm grateful the fires in Duarte and Azuza are out. That would have made an already arduous trip to COH even...more fun.
Steven's counts look good enough that we don't have to come back for another month! His hemoglobin and hematocrit just squeaked in the normal range...we will take it!
Tuesday, June 28, 2016
The Hickman Catheter (there are pictures!)
It was pretty bizarre when Steven had his Hickman Catheter inserted at the end of September. This long line hangs out of your chest, can't get wet, must be flushed with heparin every day, and it's dressing must be changed every week. Life saving units of blood in, many weekly blood tubes out.
I don't remember when he actually got used to it but we are grateful he doesn't need it any longer. When the lines hung, they ended at his waist. At COH, they had a special clip that attached it, coiled, to the collar of his shirt. When Steven was discharged, they showed us how to coil it and tape to his chest. That worked until his hair started growing in :) So instead of taping it, Steven decided to let it hang. What a great idea until a nurse thought it had pulled out a little...back to the clip. Who knew?
Gloved and masked, I worked on taking the dressing off with an adhesive remover, being careful not to push too hard where the line runs under the skin.
With the Biopatch removed, you can see the stitches that keep the line from falling out. There is also a "cuff" under the skin inside the insertion point. When they talked about a cuff, I imagined a disk like object because, after all, there has to be something in there keeping it from falling out! At this point, hands are washed and regloved. The area is cleaned with Chloraprep (iodine based) being careful to work from the stitches outward. A thin film of skin prep is wiped where the new dressing will be. A new Biopatch is laid with Tagaderm dressing covering the area. But wait there's more! Now the tips are changed. A tip is removed using alcohol on a gauze pad, more alcohol, a new tip, more alcohol, saline flush, more alcohol, and a heparin flush. Smile and repeat for the second tip. This was a Reader's Digest version but you get the picture.
Eventually she pulled the mother of all lines out. See the small red area on the catheter? That is the "cuff". Good heavens, not what I expected. It was almost like a piece of gauze. If we had known that was the only thing keeping his line in, I don't think we would have ever let it hang!
It was a longer line than we realized. So awesome! The last thing I remember is the nurse using a scalpel...I'm thinking Steven will need stitches. Nope. They put a bandage on it similar to the Tagaderm dressing. It couldn't get wet for 48 hours and then we could take the large dressing off and put on a band-aid. One more step towards normalcy...
I was pretty methodical when changing his dressing, 100% Type A. We have a small table that I alcoholed and covered with a clean cloth. After laying all the supplies on the table, each item was prepared (air out of syringes, containers opened, etc...).
The disk over the insert point is called a Biopatch. It is imbedded with chlorhexidine (CHG) which continuously suppresses the growth of bacteria on the skin. Without this protection, bacteria will immediately repopulate possibly causing infection.
With the Biopatch removed, you can see the stitches that keep the line from falling out. There is also a "cuff" under the skin inside the insertion point. When they talked about a cuff, I imagined a disk like object because, after all, there has to be something in there keeping it from falling out! At this point, hands are washed and regloved. The area is cleaned with Chloraprep (iodine based) being careful to work from the stitches outward. A thin film of skin prep is wiped where the new dressing will be. A new Biopatch is laid with Tagaderm dressing covering the area. But wait there's more! Now the tips are changed. A tip is removed using alcohol on a gauze pad, more alcohol, a new tip, more alcohol, saline flush, more alcohol, and a heparin flush. Smile and repeat for the second tip. This was a Reader's Digest version but you get the picture.
We had to schedule his Hickman removal...outpatient procedure. I was thrilled to be able to stay and see the procedure. The nurse practitioner explained the procedure, papers were signed, the site was draped/prepped and a local anesthetic was injected around the insertion point. The nurse was explaining that sometimes the lines are hard to get out, especially when they have been in this long.....great. Apparently the catheter can become attached to the wall of the vein (all Steven could think of was the quote from Pirates..."part of the ship...part of the crew"). She picked up a scalpel at one point and I backed away from the table.
Wednesday, June 1, 2016
Day +204-Day +218
Today is a big day, another milestone. Steven has had his blood drawn through his Hickman catheter for the last time. He is scheduled to have it removed today. You would think we are dancing a jig but it has become an old friend...literarily a part of him. It's part of our routine to flush every day with heparin and change the tips and dressing every week. Since he hasn't received a unit of blood for 3 months, it is time to have it removed. I think I already mentioned that most patients have their line pulled around 100 days, the magical number that betrayed us. We got to wait twice as long as most patients to see any kind of results...Murphy's Law. The transition of blood type was the sticking point but fortunately we are there and no worse for wear. Did I mention the Hickman is inserted into the superior vena cava, direct flow to the right atrium of his heart? It's time to get rid of it and the infection risk not to mention how nice will it be for Steven to not have to put the line in a baggie and tape it to his chest when he takes a shower. It couldn't get wet...weren't you wondering why we haven't been to a water park??? Going forward, he will have his blood drawn like the rest of us. He was getting very hard to draw before the line was inserted in September, but that may have been because he had minimal platelets, WBC's and RBC's. He has had his Hickman since the end of September and it is time to say goodbye!
Clinic visit went well but Steven has had a lot of nausea this past week. They will keep his meds the same and gave their blessings to have his Hickman removed....although they thought about it for awhile. He most likely has a little GVHD and they were concerned with dehydration. Steven was given his marching orders to increase his nausea medication and we have to come back next week...bummer.
We were here 1/2 hour early so naturally they took us 1/2 hour late for clinic which made us 1/2 hour late for our Hickman removal. I got to watch them remove it...so cool. I will post awesome pictures in a separate post. If you are squeamish or don't dig medical pictures, you can skip that post with the rest of the humanities majors. :)
It's National Nurses Week and we brought donuts/Nothing Bundt cakes for our nurses at the VAD draw center and at clinic. The nurses at City of Hope are stellar, top notch professionals. I can't say enough about them and how amazing they have been through this entire process. From fighting...I mean speaking with our insurance company, to helping us get our Hickman supplies, to listening to our concerns (whining), to all the reassurance and compassion, they have been with us every step of the way. Thank you!!
Clinic visit went well but Steven has had a lot of nausea this past week. They will keep his meds the same and gave their blessings to have his Hickman removed....although they thought about it for awhile. He most likely has a little GVHD and they were concerned with dehydration. Steven was given his marching orders to increase his nausea medication and we have to come back next week...bummer.
We were here 1/2 hour early so naturally they took us 1/2 hour late for clinic which made us 1/2 hour late for our Hickman removal. I got to watch them remove it...so cool. I will post awesome pictures in a separate post. If you are squeamish or don't dig medical pictures, you can skip that post with the rest of the humanities majors. :)
It's National Nurses Week and we brought donuts/Nothing Bundt cakes for our nurses at the VAD draw center and at clinic. The nurses at City of Hope are stellar, top notch professionals. I can't say enough about them and how amazing they have been through this entire process. From fighting...I mean speaking with our insurance company, to helping us get our Hickman supplies, to listening to our concerns (whining), to all the reassurance and compassion, they have been with us every step of the way. Thank you!!
Saturday, May 14, 2016
40th Bone Marrow Transplant Reunion
The comedian, a BMT survivor from COH, was pretty funny. He talked about all the things every single person there could relate to...like all the patients carrying gallon jugs of urine at the hospital, I couldn't believe all the nurses have to do, the minute you check in they start an IV and insert a Hickman, I need a cardiac stress test???..."I have cancer, how well am I supposed to do!!!" Some of the things he joked about I forgot we had to deal with!
And can you believe it rained! The only thing they weren't able to get done was the massive photo of all the BMT recipients that attended. This was definitely an event that we will try to attend every year. It's a club you don't want to belong to, but if you do, it provides humor, camaraderie, hope and success.
Wednesday, May 11, 2016
Day +190-Day +203
4/26/16-There is a man next to us getting instructions from a nurse…"you will get 3 shots of Neupogen three days in a row and then you will come in so we can harvest your stem cells". He looked uber nervous as the nurse continued, "we are not taking your bone marrow under sedation like we used to"... This man is a bone marrow donor and is in the process of giving new life to a lucky recipient. I reflect on how humble and grateful we are for Steven's new bone marrow. He is doing really well! There is nothing like good Midwestern stock and an excellent HLA match! We are almost 7 months post transplant and so much has happened and there is so much more that needs to happen. We now know why COH gave us information in small amounts... this is the most overwhelming process we have ever experienced. Even in small amounts, this has been daunting, joyous, depressing, confusing, and awe-inspiring, all at the same time.
I wait in the patient/caregiver library while Steven is getting his blood drawn. Several anxious couples are waiting for their first of many classes. Today is a bone marrow class for all new patients and their caregivers. It seems like yesterday that Steven and I sat in that class. They have no idea what they are in for but have taken the same leap of faith that we did, that it will all work out for the best. You have no choice and have to work through it. It's been a year since Steven's diagnosis and the reality of how fragile life is. Unless you have walked in our shoes, it is hard to imagine how consuming this has been.
Lazarus…I mean Steven, has had his blood drawn and we are waiting for clinic. He experienced hives over the weekend and had to take Benedryl. It could be graft vs. host disease. They are slowly reducing one of his anti-rejection medications, Tacrolimus. It is exciting that they are reducing this but nerve racking at the thought of GVHD. Mouth sores don't seem to be an issue anymore but rashes are.
The lab results are back and his hemoglobin is 10.1 g.dl, WBC 3.1 and a normal ANC. We are living large! Our doctor said that Steven is doing really well. How well? Steven has been working 2 days a week. This is huge considering when we started this process, our doctor said he recommends his patients do not go back to work for a year. Although, he is pretty exhausted when he gets home and usually takes a nap. It is just another reminder what his body has gone through.
Steven has started physical therapy twice a week. Between the loss of muscle mass and neuropathy, he is working hard to regain what he has lost.
I wait in the patient/caregiver library while Steven is getting his blood drawn. Several anxious couples are waiting for their first of many classes. Today is a bone marrow class for all new patients and their caregivers. It seems like yesterday that Steven and I sat in that class. They have no idea what they are in for but have taken the same leap of faith that we did, that it will all work out for the best. You have no choice and have to work through it. It's been a year since Steven's diagnosis and the reality of how fragile life is. Unless you have walked in our shoes, it is hard to imagine how consuming this has been.
Lazarus…I mean Steven, has had his blood drawn and we are waiting for clinic. He experienced hives over the weekend and had to take Benedryl. It could be graft vs. host disease. They are slowly reducing one of his anti-rejection medications, Tacrolimus. It is exciting that they are reducing this but nerve racking at the thought of GVHD. Mouth sores don't seem to be an issue anymore but rashes are.
The lab results are back and his hemoglobin is 10.1 g.dl, WBC 3.1 and a normal ANC. We are living large! Our doctor said that Steven is doing really well. How well? Steven has been working 2 days a week. This is huge considering when we started this process, our doctor said he recommends his patients do not go back to work for a year. Although, he is pretty exhausted when he gets home and usually takes a nap. It is just another reminder what his body has gone through.
Steven has started physical therapy twice a week. Between the loss of muscle mass and neuropathy, he is working hard to regain what he has lost.
Saturday, April 23, 2016
Day +187-Day +189
4/12/16-Our doctor only has clinic in the afternoon today so we are here at a weird time. Our blood draw was at 11:45am and we ASSumed our clinic visit (can you see where this is going) an hour later, like it has been since the beginning of time. After Steven's blood draw he checked into clinic. The receptionist says, "wow, your clinic visit isn't until 3pm." I said, no chance, and continued with, "our clinic visits are an hour after the blood draw since we have been coming here, I don't think our doctor wants us to wait for 3 hours, if our clinic visit was at 3pm why did I need to be here at 11:45......blah blah blah". By then she was making a phone call and I believe we will be seen in an hour.
Steven is not vain by any means, but he hasn't weathered the loss of his hair well. It is really filling in great, same color and straight like before. It's soft, like a newborns! Interestingly it is growing in uneven and we made a stop at the Positive Image Department. We spoke to them about his hair and they immediately trimmed it up. We can go as often as necessary, no charge. They also have wigs, scarves, hats, makeup and other items that are helpful when patients are dealing with the effects of chemotherapy. COH thinks of everything. They are also the people who came to Steven when he was admitted and shaved his head when his hair started falling out. We were impressed with this from the beginning. They not only treat the disease, but everything else in-between. I can't think of one thing that we would need that isn't addressed on campus. Steven looks so much better, even his coloring is coming back. It just validates again that we made the right decision to come here.
Back to the clinic visit....
His hemoglobin is holding at 9 g/dl, no blood. It's been 6 weeks since he has had a unit. The good news is his blood type has fully converted to A+...finally! We suspect there is still some stubborn Swede anti-A floating around but Steven's bone marrow is finally making red cells. No clinic visit next week...our evil plan is working!
Steven is not vain by any means, but he hasn't weathered the loss of his hair well. It is really filling in great, same color and straight like before. It's soft, like a newborns! Interestingly it is growing in uneven and we made a stop at the Positive Image Department. We spoke to them about his hair and they immediately trimmed it up. We can go as often as necessary, no charge. They also have wigs, scarves, hats, makeup and other items that are helpful when patients are dealing with the effects of chemotherapy. COH thinks of everything. They are also the people who came to Steven when he was admitted and shaved his head when his hair started falling out. We were impressed with this from the beginning. They not only treat the disease, but everything else in-between. I can't think of one thing that we would need that isn't addressed on campus. Steven looks so much better, even his coloring is coming back. It just validates again that we made the right decision to come here.
Back to the clinic visit....
His hemoglobin is holding at 9 g/dl, no blood. It's been 6 weeks since he has had a unit. The good news is his blood type has fully converted to A+...finally! We suspect there is still some stubborn Swede anti-A floating around but Steven's bone marrow is finally making red cells. No clinic visit next week...our evil plan is working!
Sunday, April 10, 2016
Day +177-Day +186
4/10/16-I'm finishing my thoughts from our last clinic visit ten days later! Sorry about that. Steven's hemoglobin went up to 9.1. No blood again. They ordered a type and screen for our next clinic visit on 4/12...meaning they will see what his blood type is and screen for antibodies. My guess is he is an A, or something in-between. We actually didn't have to go to clinic this past week! So great :) We have been so busy with his recovery that simply freeing up a week gives us so much extra time we didn't have before. It was the first time we got to skip a week. I hope this becomes the trend. There might be talk about pulling Steven's Hickman Catheter soon. Usually it is pulled around 100 days but having a Hickman made getting his weekly unit of blood quick and painless.
Before Steven's bone marrow transplant, our last fun event was going to Disneyland for Steven's 60th birthday. It seems like ages ago, buying season tickets before our medical bump in the road. We are almost at that point a year later but as you know, no Disneyland for us. Steven wrote and emailed Disney seeing if there was anything they could do and explained our series of unfortunate events. They don't call it the Happiest Place on Earth for no reason. Disney is extending our tickets for another year! Thank you, thank you, thank you! Hopefully we will be able to go back at the end of the year, after Steven's one year anniversary and a few childhood vaccinations under his belt. We appreciate their accommodation and flexibility and are grateful.
Before Steven's bone marrow transplant, our last fun event was going to Disneyland for Steven's 60th birthday. It seems like ages ago, buying season tickets before our medical bump in the road. We are almost at that point a year later but as you know, no Disneyland for us. Steven wrote and emailed Disney seeing if there was anything they could do and explained our series of unfortunate events. They don't call it the Happiest Place on Earth for no reason. Disney is extending our tickets for another year! Thank you, thank you, thank you! Hopefully we will be able to go back at the end of the year, after Steven's one year anniversary and a few childhood vaccinations under his belt. We appreciate their accommodation and flexibility and are grateful.
Day +168-Day +176
3/31/16-We moved our clinic day to today, a Thursday. I had a work commitment on Tuesday and COH graciously accommodated me. Our doctor should be back and we have several questions. It's a state holiday and I don't have to go into work so I plan on showing Steven some of the gardens I used to walk when he was admitted here. It occurred to me last week that we will be here full circle and will experience all the beautiful trees/shrubs/flowers here. It really is beautiful here.
My anger at life interrupted and changed plans got the best of me. I have a renewed look at where we are in this process. Life goes quickly, for good or for bad and we are in our 6th month, 1/2 way there. We received an invitation for the 40th Bone Marrow Transplant Reunion in May and are thrilled to attend. Many transplant recipients have the opportunity to meet their donors. We won't be able to because we are not allowed contact with our donor before a year plus the man lives in Germany...not exactly around the corner! This is a big event and we are thrilled to be able to participate. I am humbled at the thought of those who are not able to attend the reunion and grateful for Steven's new lease on life. The small stuff clouded my perception of what was really important.
The rose garden is beautiful now. Everything is blooming. Each plant is labelled with the rose name and variety. There is a life sized statue of John Paul II and Mary.
My anger at life interrupted and changed plans got the best of me. I have a renewed look at where we are in this process. Life goes quickly, for good or for bad and we are in our 6th month, 1/2 way there. We received an invitation for the 40th Bone Marrow Transplant Reunion in May and are thrilled to attend. Many transplant recipients have the opportunity to meet their donors. We won't be able to because we are not allowed contact with our donor before a year plus the man lives in Germany...not exactly around the corner! This is a big event and we are thrilled to be able to participate. I am humbled at the thought of those who are not able to attend the reunion and grateful for Steven's new lease on life. The small stuff clouded my perception of what was really important.
The rose garden is beautiful now. Everything is blooming. Each plant is labelled with the rose name and variety. There is a life sized statue of John Paul II and Mary.
The Japanese Garden is surrounded by a wooden fence. You wouldn't even know it was behind the fence if you didn't look for it. There are many benches to sit and watch the koi in the pond.
Thursday, March 31, 2016
Day +167
3/22/16-Our doctor had to go to India. His father had a stroke, so we are seeing a nurse practitioner today. Steven has a cold. Now in a perfect world, this isn't a big deal. In fact, two years ago I would have said, is this the kind of cold carried on the "Y" chromosome?? We mentioned his cold and the rules became different. He got a Zithro prescription, nasal wash with culture and throat swab. No questions that might indicate you have to suck it up and let the virus run it's course or a lecture on how antibiotics are overused. The good news is we will be here every week for a follow up. Nasty cough.
This is the third week where Steven has not had to get blood. Why didn't I mention it earlier? I kept waiting for the other shoe to fall. The recovery of a BMT patient is so tenuous. When counts get better, they don't always continue to get better. We have been leaving here as if we were skipping class. I would look over my shoulder for someone to run after us saying, oh sorry, we got you confused with someone else and you need 6 units of blood on the no crossmatch and we called a crash cart as well. I'm a little shell shocked....
Steven is still very very tired even though his hemoglobin is higher than it's been since we started this process. That is one of the unfortunate consequences of a BMT, extreme fatigue.
This is the third week where Steven has not had to get blood. Why didn't I mention it earlier? I kept waiting for the other shoe to fall. The recovery of a BMT patient is so tenuous. When counts get better, they don't always continue to get better. We have been leaving here as if we were skipping class. I would look over my shoulder for someone to run after us saying, oh sorry, we got you confused with someone else and you need 6 units of blood on the no crossmatch and we called a crash cart as well. I'm a little shell shocked....
Steven is still very very tired even though his hemoglobin is higher than it's been since we started this process. That is one of the unfortunate consequences of a BMT, extreme fatigue.
Tuesday, March 22, 2016
Day +142 - Day + 167
Hello, it's me
I was wondering if after all these years you'd like to meet
To go over everything
They say that time's supposed to heal ya
But I ain't done much healing......
I was wondering if after all these years you'd like to meet
To go over everything
They say that time's supposed to heal ya
But I ain't done much healing......
Oh wait, ha ha ha, I forgot what I was doing it's been so long!! You probably don't want to hear me sing so I'll apologize. I didn't mean to check out, but that is what happened. It was becoming the same weekly schedule and I checked out. We had several people call/text/email and want to know what was happening. We are alive and well, one of us is anyway. Time goes super quick and it's been a month since I last blogged. Since then, we have been at clinic every week, a blood draw, clinic visit, a unit of blood. We did receive some semblance of hope with Steven's red cells three weeks ago as his hemoglobin didn't seem to be dropping as fast. He didn't receive blood the last two weeks. We will see what today will hold.
Since we last spoke, Steven's sister and husband came to visit from Illinois. We couldn't do too much but it was a nice visit, and I assume an important one for his sister.
Our life is on hold for a year. There is no better way to say it. We've come to grips with it so when someone asks me how is Steven, and I give them this blank look, it's not because I don't want you to ask, I just am not sure what to say. Fine...ok...recovering...great (not true)...how about, not bad... No matter what I say it does't seem right and I feel like I need to go into a dissertation on how he really is. Like I said in the beginning, it's a marathon not a sprint. Time truly has been flying by but we have been living day by day, each day is the same as the last, they just click along. Thank you for asking. Just ignore any blank stares from me :)
I ended my caregiver program. It was a great program where I could discuss issues and get suggestions on how to handle them. As much as I enjoyed speaking with someone from Be The Match, other caregivers need their time more than I do.
Steven still has his Hickman catheter which we still maintain. It looked like it was starting to pull out a little...that might have been a little our fault. It's hard to secure with tape so Steven was just letting it dangle, which apparently is not a good idea. Live and learn. At his blood draw this morning, the nurse said that they are typically pulled at 100 days. It's good to be different.
Our life is on hold for a year. There is no better way to say it. We've come to grips with it so when someone asks me how is Steven, and I give them this blank look, it's not because I don't want you to ask, I just am not sure what to say. Fine...ok...recovering...great (not true)...how about, not bad... No matter what I say it does't seem right and I feel like I need to go into a dissertation on how he really is. Like I said in the beginning, it's a marathon not a sprint. Time truly has been flying by but we have been living day by day, each day is the same as the last, they just click along. Thank you for asking. Just ignore any blank stares from me :)
I ended my caregiver program. It was a great program where I could discuss issues and get suggestions on how to handle them. As much as I enjoyed speaking with someone from Be The Match, other caregivers need their time more than I do.
Steven still has his Hickman catheter which we still maintain. It looked like it was starting to pull out a little...that might have been a little our fault. It's hard to secure with tape so Steven was just letting it dangle, which apparently is not a good idea. Live and learn. At his blood draw this morning, the nurse said that they are typically pulled at 100 days. It's good to be different.
Tuesday, February 23, 2016
Day +134 - Day +141
2/23/16-We found out our contract has indeed expired with the pharmacy at COH. That would have been good to know earlier. We were only granted a 3 month contract since that is the length of time the average patient has a Hickman line. Leave it to Steven to be an overachiever. The RN we spoke to last week called our case manager and we were set up with a pharmacy that mails the Hickman supplies to our home. It looks like we only have to satisfy our deductible and won't pay any extra. I have to be on my "A" game and make sure I don't run out of any supplies since I have to order them now.
Steven's counts are the same as last week so we are waiting for our unit of blood. It takes about a day for the blood to make him feel better making Thursday his best day. Our doctor eluded to possibly not need weekly clinic visits. It all depends on how cooperative the new RBCs will be and when they will present themselves. Each week, the unit seems to last a little longer so we have our fingers crossed for every other week soon.
Since we are always here over the lunch hour, our big question is what is the soup of the day. It's the only thing he can eat in the cafeteria due to the restrictions...no lunch meat unless it is heated to 160 degrees and no salads. You'd be surprised how much that eliminates! I can automatically eliminate any soup with a tomato base...we found out over the weekend that is a trigger for nausea.
Steven's counts are the same as last week so we are waiting for our unit of blood. It takes about a day for the blood to make him feel better making Thursday his best day. Our doctor eluded to possibly not need weekly clinic visits. It all depends on how cooperative the new RBCs will be and when they will present themselves. Each week, the unit seems to last a little longer so we have our fingers crossed for every other week soon.
Since we are always here over the lunch hour, our big question is what is the soup of the day. It's the only thing he can eat in the cafeteria due to the restrictions...no lunch meat unless it is heated to 160 degrees and no salads. You'd be surprised how much that eliminates! I can automatically eliminate any soup with a tomato base...we found out over the weekend that is a trigger for nausea.
Tuesday, February 16, 2016
Day +119 - Day +133
2/9/16-After our 7 hour extravaganza last week at COH, things are moving a little faster today. That might be because of an inquiry email to hematology... I like being Steven's advocate. His blood counts are even better this week. There has been a slight increase in WBC's and RBC's. His WBC's are finally in the normal range but the RBC's are still lagging. He is getting a unit of O+.
So here's a fun fact... Steven typed as an O this morning. He typed as a B last week, his birth type. He's thinking his B cells have circulated out and the O is purely from all the transfusions. Hopefully his donor A cells will become victorious soon.
We are seeing the endocrinologist today. Looks like it is status quo...check glucose levels before meals. Hopefully the increased glucose will go away after he is off of some of the medications.
2/16/16-They forgot to call our name for the blood draw this morning. We are already an hour behind. Labs look the same as last week and are waiting for our weekly unit of blood. I asked a bazillion questions today: flu shot? no, childhood vaccinations? no, physical therapy? ok, teeth cleaning, yes, and I also need more Hickman line supplies, no problem.
Steven still has his Hickman line...thank goodness. With weekly blood draws and an infused unit of blood, that would be a lot of sticks by a phlebotomist. He was getting hard to stick before we were admitted, I can't imagine what he would look like without a line. I needed more supplies to change the dressing and heparin to flush the line, which I do every day. The COH pharmacy informed me that our contract is over and I would need to pay out of pocket. A box of heparin alone is over $100 and I needed a few other supplies totaling over $300. Back to clinic to speak with one of the RN's who made several calls and found out our contract is indeed over with the COH pharmacy. But because Steven has medical need for a Hickman (who has one inserted in their chest for fun), our insurance company has to negotiate with a 3rd party vendor. I'm not sure what this means but I get the feeling this is going to chip away at our empty nest funds......oh well, it could be worse! The RN gave me enough heparin for the week. We will see how this plays out at our next clinic visit. Steven is getting another unit of O+ and then we will be on our way.
Tuesday, February 2, 2016
Day +113 - Day +118
We got good news for the first time in awhile. Steven's WBC was in the normal range, 3.6. It hasn't been normal in over a month. His platelets were even higher today although they have steadily been in the normal range. The RBCs are still non-existent but we know that is expected. We are waiting for a unit of blood to be ready. Because we have been and will continue to receive blood every week, they are increasing the Jadenu (Fe chelator). Since he has been taking this medication at night, he hasn't had nausea associated with it. We will see if increasing it makes him more nauseated again.
There was a lot of finger pointing today between blood bank and the nurses. The upshot is the unit of O+ blood just got hung at 1:15pm. It was ordered in clinic at 9:30am... I can't think of anything nice to say so based on my upbringing, I won't say anything at all. We won't be on the road until 3:30ish...
I'm looking forward to having our life back.
There was a lot of finger pointing today between blood bank and the nurses. The upshot is the unit of O+ blood just got hung at 1:15pm. It was ordered in clinic at 9:30am... I can't think of anything nice to say so based on my upbringing, I won't say anything at all. We won't be on the road until 3:30ish...
I'm looking forward to having our life back.
Tuesday, January 26, 2016
Day +106 - Day +112
1/26/16-Our clinic appointment is later today and there are many more people here. We are waiting anxiously to see if Steven's WBCs have increased after two shots of Neupogen. He already knows he will need blood, just by how he feels.
WBCs are up 0.4 for a whopping count of 2.6. He will not get Neupogen today. I am eternally grateful for this drug and everyone at Amgen, including Steven, who made it available and safe for patients. When Steven started at Amgen in 1999, I was amazed at the life saving drugs they were devising. I remember saying to him..."I hope we never need one of these medications...". Never say never, this is from personal experience. It was such a great company to work for with life saving drugs and top notch employees.
Then there is his HGB of 6.8...zzzzzzzzzzz. This count makes me fall asleep it's so low. It shows you how he has adjusted to this low of a count for a long time. As women, we frequently walk around with a low HGB, and adjust to continue our wife, mother, sister, daughter, etc...activities. For a 6'4" man to have this low of a count and get where he needs to go clearly shows how his body has adjusted to the situation. He will get one unit today, that's 4 per month. The doctor assured me it isn't too hard on his heart to walk around with that low of a count. Giving him too many and we still have to worry about hemochromatosis, too much Fe, even though he is on Jadenu (Fe chelator). We will now wait for the unit of blood to be ready.
The unit of O+ is here at 12:30pm, did I mention we have been here since 8:30am? He is still typing as B+. We have another 1 1/2 hour here and then will hopefully be able to leave before rush hour!
WBCs are up 0.4 for a whopping count of 2.6. He will not get Neupogen today. I am eternally grateful for this drug and everyone at Amgen, including Steven, who made it available and safe for patients. When Steven started at Amgen in 1999, I was amazed at the life saving drugs they were devising. I remember saying to him..."I hope we never need one of these medications...". Never say never, this is from personal experience. It was such a great company to work for with life saving drugs and top notch employees.
Then there is his HGB of 6.8...zzzzzzzzzzz. This count makes me fall asleep it's so low. It shows you how he has adjusted to this low of a count for a long time. As women, we frequently walk around with a low HGB, and adjust to continue our wife, mother, sister, daughter, etc...activities. For a 6'4" man to have this low of a count and get where he needs to go clearly shows how his body has adjusted to the situation. He will get one unit today, that's 4 per month. The doctor assured me it isn't too hard on his heart to walk around with that low of a count. Giving him too many and we still have to worry about hemochromatosis, too much Fe, even though he is on Jadenu (Fe chelator). We will now wait for the unit of blood to be ready.
The unit of O+ is here at 12:30pm, did I mention we have been here since 8:30am? He is still typing as B+. We have another 1 1/2 hour here and then will hopefully be able to leave before rush hour!
Day +101-Day +105
It's a week since we came to clinic and we are thrilled. Just having an extra day back is huge for both of us. I found a new place to wait for Steven when he is having his blood drawn. Around the holidays, the waiting rooms were a hot bed of vermin and disease. I don't mean what Steven has, I mean flu, colds, ebola.....sorry that was overdramatic! There is a resource center for patients and caregivers. It has a large variety of reading material and living room type chairs that make it a great place to wait for him. It's quiet and not by the patient check-in and waiting areas.
Counts are still low...another shot of Neupogen and a unit of O- donor designated blood! A nurse asked us if we were collecting the tags that say donor designated. Ummm no, no one ever asked us that! Yes we would love it :) I'm glad they didn't ask us at the beginning of this process, we already park 3 cars in the driveway versus the garage. I could have wallpapered the bathroom with all of them by now.....
Counts are still low...another shot of Neupogen and a unit of O- donor designated blood! A nurse asked us if we were collecting the tags that say donor designated. Ummm no, no one ever asked us that! Yes we would love it :) I'm glad they didn't ask us at the beginning of this process, we already park 3 cars in the driveway versus the garage. I could have wallpapered the bathroom with all of them by now.....
Saturday, January 16, 2016
Day +100
Where is the marching band? Where is the parade? Thursday was Day 100, the magical number, but it's status quo for us. Steven's white cell count was too low to lift any of the restrictions. We can't help but be disappointed. They really put a huge emphasis on that benchmark but…it's all about the counts. Hopefully his WBC count will be increased after receiving Neupogen. The good news is we didn't need to go to clinic on Friday. That is HUGE!! No complaints but that's it for now, I have to wipe the dog down….. :)
Wednesday, January 13, 2016
Day +98
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...
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...
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.
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