Steven visited the endocrinologist today. No regular clinic visit. He still had to get his blood drawn for lipid panel and metabolism panel. Steven's counts all look good....most important is his glucose, cholesterol and lipids were all normal. The past huge spike in glucose was due to his immunosuppressants and TPN when he wasn't eating when admitted. Thank goodness. A diagnosis of Type 2 Diabetes or pre-diabetic is a diagnosis that effects your health insurance the rest of your life. It's a stigma that you can't get rid of. I couldn't be more happy that his chemistries seem to be back to normal and even happier that he doesn't have to check his glucose anymore.
Steven has started the process to be a Peer Counselor for Be The Match. Be The Match will match Steven with BMT patients that have questions or concerns and want to talk to someone who has gone through the process. It's a great program...similar to the one I participated in for caregivers. It's so good to be able to vent or bounce ideas off someone who can emphasize and sympathize. Steven passed his background check and is currently working on his on-line training. It's good to give back!
Wednesday, March 22, 2017
Wednesday, March 8, 2017
Day +454-Day +504
Another month since our last appointment and everything seems to be going well. Steven has had little to no GVHD that we have seen and he took his last Tacrolimus pill 4 weeks ago. He is officially off of his immunosuppressants. We got his counts back and everything looks good! Our oncologist said we need to be vigilant looking for graft vs. host disease and will need to call him. So far, the only GVHD has been in the form of a rash on his neck and chest. Nothing earth shattering however, something that needs to be monitored and noted. No immunosuppressants.......a huge milestone! We don't need to be seen for 2 months.....but we have an endocrinologist appointment in March. Oh well!
Steven has an overdue appointment at the eye clinic at USC. We should have made this appointment a long time ago. Our local ophthalmologist said Steven's eyes looked good but our COH oncologist wanted us to see an oncology ophthalmologist who specializes in GVHD and he recommended the Doheny Eye Clinic at USC. After calling the USC Eye Clinic, it turns out the Doheny Eye Clinic merged with UCLA so they made an appointment for Steven at the Roski Eye Clinic at the USC Keck Medical Center....so confusing!!! Yep, I'm as confused as you are! Steven was there ALL morning. They did an extremely thorough eye exam with every test in the book. He was seen by a oncology ophthalmologist who said Steven had no evidence of GVHD in his retina....follow up in a year!
More collateral damage.....Steven's teeth moved some point in this process, big time. He had to see an orthodontist who recommended Invisalign. If all goes according to plan....is there a plan??...his treatment will be a year. Cha ching!! Thank goodness for insurance! I was hoping he could coordinate his rubber band colors with what he was wearing to work but no :) Don't ask what's next...we are taking one day at a time.
Steven has an overdue appointment at the eye clinic at USC. We should have made this appointment a long time ago. Our local ophthalmologist said Steven's eyes looked good but our COH oncologist wanted us to see an oncology ophthalmologist who specializes in GVHD and he recommended the Doheny Eye Clinic at USC. After calling the USC Eye Clinic, it turns out the Doheny Eye Clinic merged with UCLA so they made an appointment for Steven at the Roski Eye Clinic at the USC Keck Medical Center....so confusing!!! Yep, I'm as confused as you are! Steven was there ALL morning. They did an extremely thorough eye exam with every test in the book. He was seen by a oncology ophthalmologist who said Steven had no evidence of GVHD in his retina....follow up in a year!
More collateral damage.....Steven's teeth moved some point in this process, big time. He had to see an orthodontist who recommended Invisalign. If all goes according to plan....is there a plan??...his treatment will be a year. Cha ching!! Thank goodness for insurance! I was hoping he could coordinate his rubber band colors with what he was wearing to work but no :) Don't ask what's next...we are taking one day at a time.
Tuesday, January 24, 2017
Happy New Year 2017!
Happy New Year! Our holidays went well and we even got out and did a couple of things as a family. One of the memorable events was decorating the City of Hope float for the Rose Bowl Parade. I've always wanted to decorate a float but never thought in a million years it would be for COH. Not only did this have special meaning for us but some of the other volunteers were COH bone marrow transplant survivors. There is comfort speaking with others who understand what you have gone through. Sometimes it's hard to describe events to family and friends without sounding ungrateful or complaining. I guess part of the problem is if someone asks me how Steven is doing, I'm really going to tell you!
I've made a New Year's resolution to start living life again. Steven's illness was defining me and I started feeling like I couldn't think of anything else or move on. We still have challenges but we have come so far. It's time to start thinking of other things besides our next appointment and blood count results. There is a certain amount of PTSD involved with going through a major medical event. Ours was not without exception however it is time to move on.
We passed another milestone at Steven's January appointment, after next week, he can stop taking his last immunosuppressant. Steven has been slowly weening off of Tacrolimus, decreasing one tablet every 2 weeks. This past month we have been asked to be vigilant with any symptoms of graft vs. host disease (GVHD). It has presented itself in the past as a rash on his chest and up his neck. It's a mild symptom, never the less one we need to keep an eye on. Steven's new bone marrow is still trying to figure out what should be there and what shouldn't be there in the cellular world. The goal is to be off all immunosuppressants unlike those patients who have had a large organ transplant. They are on immunosuppressants the rest of their life. It's all about your immune system! We go back in another month.
I've made a New Year's resolution to start living life again. Steven's illness was defining me and I started feeling like I couldn't think of anything else or move on. We still have challenges but we have come so far. It's time to start thinking of other things besides our next appointment and blood count results. There is a certain amount of PTSD involved with going through a major medical event. Ours was not without exception however it is time to move on.
We passed another milestone at Steven's January appointment, after next week, he can stop taking his last immunosuppressant. Steven has been slowly weening off of Tacrolimus, decreasing one tablet every 2 weeks. This past month we have been asked to be vigilant with any symptoms of graft vs. host disease (GVHD). It has presented itself in the past as a rash on his chest and up his neck. It's a mild symptom, never the less one we need to keep an eye on. Steven's new bone marrow is still trying to figure out what should be there and what shouldn't be there in the cellular world. The goal is to be off all immunosuppressants unlike those patients who have had a large organ transplant. They are on immunosuppressants the rest of their life. It's all about your immune system! We go back in another month.
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.
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