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!
Saturday, April 23, 2016
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.
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