Last night, Manisha and family treated us to pizza for dinner. It was *so* nice not to have to think about preparing food and to just be able to relax and enjoy the fam a little. Because I wasn't in the kitchen, that meant that Will got to bed early and we had more time for other things.
Mom gave herself her haircut last night, a buzz cut so that she doesn't have to deal with her hair falling out in clumps. Apparently, it's also painful for some people, so she can avoid that, too. It was kind of neat. She set up a table on the deck and used a jar to hold a mirror. I went out there to be her eyes and tell her what I saw on the back of her head. Mom says that she sees why guys wear their hair that way because it is so cool and comfortable. Apparently the damp rag after the haircut felt pretty darn good. Mom has a variety of head wraps, one wig and a second one on the way. She put on a head wrap last night and it looked super cute. Emily Allen, our friend and very talented stylist (Carmen! Carmen! Salon) is going to help her trim up her wigs so that they are just right for her.
After Mom's haircut, Allen and I got to watch the season finale of Drop Dead Diva. It came on Sunday night but we were too tired from the day to watch it. It was a two hour special and probably one of the best season finales I've ever seen, though I can't believe we have to wait several months to find out what happens. LOL!
This morning, I've been lazy. I woke up around 7:45 and just fired up the laptop and tried to catch up on a few emails (I'm soooo behind!). I think I am declaring this my pj's day unless anything unexpected happens. I hear Squirt talking to his stuffed animals and laughing in his room, so I'll just take a quick shower, throw on some pj's and spend the morning in front of the tv with him. Seems like a good time to kick back. :-)
Mom starts her Neupogen shots today. This is the medication that prepares her for having her stem cells filtered out during apheresis next week. The medication can make her feel like she has the flu and make it difficult to sleep, but we won't know how it affects her until she takes her first dose. So far, Mom hasn't had awful side effects from medications, so perhaps she will luck out with this one, too.
Tuesday, August 31, 2010
Monday, August 30, 2010
Adventures in Blood Work
This morning, Mom, Will and I headed over to NorthEast hospital for Mom to get her blood work done. At first, they wanted to take the blood from her arm, but Mom wanted them to take it from her central line (Hickman) instead, in order to reduce chance of infection. They called someone from the IV team to come down to the lab to help. They were able to get the lab work, but part of her Hickman is clogged with a blood clot. NorthEast placed a call over to Duke to find out what to do and we waited, and waited and waited.
We thought this was going to be a short visit, so were totally unprepared. Mom left her notebook at home. I didn't bring the diaper bag, Will's toys or his little potty chair. His sippy cup was in the car. He was thirsty, hungry and didn't know what to do with his energy.
Finally, we all ended up going to the cafeteria to grab a bite while we waited for Duke to call back. That was great because he finally got a giant bottle of water and some food. He could be a little noisy, run around a bit or climb up and down off the chairs at the table.
Eventually, we headed back to the lab only to find out they still hadn't found out anything. We hadn't heard anything on my cell either. Mom got out her phonebook and made a call to the nurse in charge of her case in the clinical trial. The nurse called another nurse over at the bone marrow transplant center, who called us back on my phone. She said to go home and then to see if it's still clogged on Wednesday. If it is, the clog will be addressed on that day instead of today. I hope that all works out because Will is set to start the very first day of his music class that day at 11:30. Sounds like we'll have to start out early in the morning to make sure. So anyway, after four hours of waiting around, we finally got to go home.
I'm going to grab a nap until Allen gets home. Our sweet friend Manisha is getting dinner for us tonight (thank you!) so we won't have to think about that tonight and that will make life easier. I look forward to putting my feet up a little. :-)
We thought this was going to be a short visit, so were totally unprepared. Mom left her notebook at home. I didn't bring the diaper bag, Will's toys or his little potty chair. His sippy cup was in the car. He was thirsty, hungry and didn't know what to do with his energy.
Finally, we all ended up going to the cafeteria to grab a bite while we waited for Duke to call back. That was great because he finally got a giant bottle of water and some food. He could be a little noisy, run around a bit or climb up and down off the chairs at the table.
Eventually, we headed back to the lab only to find out they still hadn't found out anything. We hadn't heard anything on my cell either. Mom got out her phonebook and made a call to the nurse in charge of her case in the clinical trial. The nurse called another nurse over at the bone marrow transplant center, who called us back on my phone. She said to go home and then to see if it's still clogged on Wednesday. If it is, the clog will be addressed on that day instead of today. I hope that all works out because Will is set to start the very first day of his music class that day at 11:30. Sounds like we'll have to start out early in the morning to make sure. So anyway, after four hours of waiting around, we finally got to go home.
I'm going to grab a nap until Allen gets home. Our sweet friend Manisha is getting dinner for us tonight (thank you!) so we won't have to think about that tonight and that will make life easier. I look forward to putting my feet up a little. :-)
Sunday, August 29, 2010
Mom is Home
Allen, Will and I left this morning around 9:00 Eastern, stopped to gas up, picked up a couple things from Food Lion, grabbed some breakfast and hit the road. It was nearly 11:30 when we got to the Duke bone marrow transplant clinic. Dale came out to the parking deck so that we could unload Mom's belongings from his car to ours. Mom was still waiting to get blood drawn, so we went to entertain Will for a few hours. He is not allowed in the bone marrow transplant clinic.
Everyone raved about the Duke gardens, so we set out to find them. We found a school building with Internet access, so fired up my laptop and got directions. Google sent us to the Duke police department. Go figure! We found a parking lot that we thought was at the gardens but it wasn't. A nice man there gave us good directions for getting there. We parked the car, grabbed a map and set out walking. It was really hot and sunny with not much shade and no breeze at all, so we figured we'd find the "cafe" and get Will an ice cream or something. Nothing was labeled and the map was poorly designed, so it took forever to find the place and when we got there it was insanely over priced, so we grabbed Squirt a juice box and tried to find our way back to the car. We were all overheated and miserable by this point and because of the unclear map, we ended up on the opposite side of the gardens and couldn't find the car. It took forever to find our way back to the car and by then I felt like I was going to throw up. Being pregnant and lost in the heat is not a good mix. We've decided never to go back there again. LOL! After that, we grabbed some lunch and then waited in the parking deck at the clinic until Mom called to say she was ready to go.
Dale and Mom came out of the clinic around 3:00 and we were on our way. Mom looks good: tired but surprisingly well for all she has bee through the past few days. She told me that Indra got back to the hotel room late last night and that she flew out this morning to go back to Kansas City to get medical care where Eric is. She was still in a lot of pain and doesn't have any answers yet, but it makes a lot of sense for her to receive care where Eric is and to be able to stay at home. I assume that she made it home okay and I'm sure we'll be in phone communication.
We made a few stops on the way home, including a stop to get some more cleaning supplies for the house. I have disinfecting wipes and other things for the bathroom to keep it sanitary for Mom. Will is going to be using the master bath for the next few weeks until Mom is over this hump in her treatment.
I think it was about 6:00 when we got home. We are all extremely tired and looking forward to a good night's sleep. I believe that tomorrow we start the every-other-day trips to the doc for blood work. Mom starts her neupogen shots on Tuesday. Side effects will make her feel like she has the flu and make it hard to sleep. She'll continue those and then Marilyn flies in on Sunday (a week from today). They'll go to Duke on that Monday to start stem cell collection.
Off to get my kid tucked into bed. He's pooped and going down insanely early tonight. What a good sport!
Everyone raved about the Duke gardens, so we set out to find them. We found a school building with Internet access, so fired up my laptop and got directions. Google sent us to the Duke police department. Go figure! We found a parking lot that we thought was at the gardens but it wasn't. A nice man there gave us good directions for getting there. We parked the car, grabbed a map and set out walking. It was really hot and sunny with not much shade and no breeze at all, so we figured we'd find the "cafe" and get Will an ice cream or something. Nothing was labeled and the map was poorly designed, so it took forever to find the place and when we got there it was insanely over priced, so we grabbed Squirt a juice box and tried to find our way back to the car. We were all overheated and miserable by this point and because of the unclear map, we ended up on the opposite side of the gardens and couldn't find the car. It took forever to find our way back to the car and by then I felt like I was going to throw up. Being pregnant and lost in the heat is not a good mix. We've decided never to go back there again. LOL! After that, we grabbed some lunch and then waited in the parking deck at the clinic until Mom called to say she was ready to go.
Dale and Mom came out of the clinic around 3:00 and we were on our way. Mom looks good: tired but surprisingly well for all she has bee through the past few days. She told me that Indra got back to the hotel room late last night and that she flew out this morning to go back to Kansas City to get medical care where Eric is. She was still in a lot of pain and doesn't have any answers yet, but it makes a lot of sense for her to receive care where Eric is and to be able to stay at home. I assume that she made it home okay and I'm sure we'll be in phone communication.
We made a few stops on the way home, including a stop to get some more cleaning supplies for the house. I have disinfecting wipes and other things for the bathroom to keep it sanitary for Mom. Will is going to be using the master bath for the next few weeks until Mom is over this hump in her treatment.
I think it was about 6:00 when we got home. We are all extremely tired and looking forward to a good night's sleep. I believe that tomorrow we start the every-other-day trips to the doc for blood work. Mom starts her neupogen shots on Tuesday. Side effects will make her feel like she has the flu and make it hard to sleep. She'll continue those and then Marilyn flies in on Sunday (a week from today). They'll go to Duke on that Monday to start stem cell collection.
Off to get my kid tucked into bed. He's pooped and going down insanely early tonight. What a good sport!
Off to Pick Up Mom...
In a few minutes, Allen, Will and I are leaving for our trip to pick up Mom from Duke. No new info on Indra yet but I'll keep you posted as we know more. I probably won't get online until sometime this evening after we're back at the house.
Saturday, August 28, 2010
More Info
I talked with Marilyn when she got off the phone with Eric and found out that Duke did x-rays on Indra and didn't find anything. She rated her pain as a 10 out of 10 and they have her on some good pain meds now. They're going to be running more tests until they get to the bottom of what is going on. If I hear more, I will update here. It may be morning before any of us know much more.
Mom said that the greeter from the bone marrow transplant center had been there when everything went down with Indra and that he went to see her at the hospital after he got off of work. I thought it was wonderful that he could do that. It frustrates me that nobody (family-wise) is able to be there with Indra right now, so knowing that someone cared enough to go and check on her is really wonderful.
Allen, Will and I will leave tomorrow morning to pick up Mom from Duke. Dale is going to load the luggage from the hotel room into his car and then we'll meet them at the bone marrow transplant center. Mom's appointment is at 10:30 tomorrow. We may try to be there at 11:00 or so. We can also get Indra's luggage to her at that time and stop by to see how she is doing.
Tonight, Allen and I have been sterilizing the bathroom in preparation for Mom's return. Allen changed the bunny litter in her room. All that's left is sterilizing the kitchen and Allen says he can just do that in the morning.
Praying for answers about what is going on with Indra. Hopefully we will know more soon...
Mom said that the greeter from the bone marrow transplant center had been there when everything went down with Indra and that he went to see her at the hospital after he got off of work. I thought it was wonderful that he could do that. It frustrates me that nobody (family-wise) is able to be there with Indra right now, so knowing that someone cared enough to go and check on her is really wonderful.
Allen, Will and I will leave tomorrow morning to pick up Mom from Duke. Dale is going to load the luggage from the hotel room into his car and then we'll meet them at the bone marrow transplant center. Mom's appointment is at 10:30 tomorrow. We may try to be there at 11:00 or so. We can also get Indra's luggage to her at that time and stop by to see how she is doing.
Tonight, Allen and I have been sterilizing the bathroom in preparation for Mom's return. Allen changed the bunny litter in her room. All that's left is sterilizing the kitchen and Allen says he can just do that in the morning.
Praying for answers about what is going on with Indra. Hopefully we will know more soon...
Another Update
So, not even five minutes after my last post, here I am blogging again. lol. Just when I was saying that we hadn't heard anything more from Eric, he called to let me know that he got in touch with Indra in the ER. She finally has a room and the doctor is going to start her on some pain medication right away and then investigate to figure out what is going on with her. He'll call me when he knows more. Of course, I'll pass any info on to you as soon as I hear...
Small Update
I still don't know what is going on with Indra, but I do know that when I talked with Eric she wasn't in a room in the ER yet. It has to be good news on some level that she's conscious and not in such bad shape that they had to admit her right away. We are still waiting to hear that she's been seen and to find out what is going on with her. Hopefully they will be able to find the source of her pain and help her to feel better.
Dale arrived to be with Mom shortly after my last post. He took her to CVS to get her medicine and a hair clipper so that she can shave her head before her white cells drop and she's not allowed to (risk of infection). She prefers that to losing it in clumps a couple of weeks from now.
I'll post more as soon as I hear more about Indra...
Dale arrived to be with Mom shortly after my last post. He took her to CVS to get her medicine and a hair clipper so that she can shave her head before her white cells drop and she's not allowed to (risk of infection). She prefers that to losing it in clumps a couple of weeks from now.
I'll post more as soon as I hear more about Indra...
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