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!
Tuesday, July 26, 2016
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!
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