Bea and I are off for her second treatment at Pittsburgh Children's Hospital. We leave for the airport in a couple of hours. It's a quick trip. Bea has her vaccine appointment at 10am tomorrow. We're being limo'd to the airport at 3 for a 6:50 flight. That'll give us a lot of wiggle room if there are delays.
It's a Happy Easter for the kids. Bea got up early to see if the Easter Bunny arrived. And, so, the bunny had shown and left both Bea and Lewis baskets and hid some of our eggs. It seems that we didn't leave carrots out the last few years and the disgruntled bunny passed us by. Oh well. Live and learn...
Sunday, April 8, 2012
Wednesday, April 4, 2012
Second Trip to Pitt Coming Up!
Bea and I are going on our second trip to Pittsburgh this weekend. We're leaving midafternoon on Sunday and will arrive early evening. This trip is just a shot. No MRI or any bloodwork. So, it's just a matter of waking up, getting to her appointment on time and then heading home. The appointment always takes a lot longer than stated on paper so the day won't be short. But, it'll be easy in terms of what they'll be doing to Bea.
And, Bea has a Kindle Fire now so I can load it with music, games and videos to entertain her while we wait. Hands down her favorite game is Angry Bird, music is the Fresh Beat Band and favorite video alternates from the Jetsons to the Pink Panther to the Mr. Men Show.
As a reward for her courage her dad and I are taking her to see the Fresh Beat Band on Friday the 13th of April. She is absolutely pumped. If any of you know the Fresh Beats this show is like sugar on steroids. And, if you know mom and dad you know that this is not exactly our scene when it comes to music. But, it's not for us, eh? Bea is stoked and I'm sure there will be a few musical moments here and there that'll be pretty great... well, I'm going to try to keep an open mind at the very least!
And, Bea has a Kindle Fire now so I can load it with music, games and videos to entertain her while we wait. Hands down her favorite game is Angry Bird, music is the Fresh Beat Band and favorite video alternates from the Jetsons to the Pink Panther to the Mr. Men Show.
As a reward for her courage her dad and I are taking her to see the Fresh Beat Band on Friday the 13th of April. She is absolutely pumped. If any of you know the Fresh Beats this show is like sugar on steroids. And, if you know mom and dad you know that this is not exactly our scene when it comes to music. But, it's not for us, eh? Bea is stoked and I'm sure there will be a few musical moments here and there that'll be pretty great... well, I'm going to try to keep an open mind at the very least!
Sunday, April 1, 2012
Bea Is Back at School
Bea returned to school a week ago. It was well time for it to happen and time for me to let go of my fear of having her out of my sight.
Going back to school has ultimately been good for the entire family. There's a sense of normalcy that we haven't had in some months. That lingering feeling that something's not quite right is always present but it's not chirping so loud right now. And, that's just with me. Bea is another story.
She's thrilled to be back at school. The routine is pretty much the same as in the fall. I have to drag her out of bed. She watches the Pink Panther or the Jetsons or some other old school cartoon while she eats her breakfast. She procrastinates on getting dressed and minutes before the bus comes she decides she has to go potty. Same old. Same old. Then I get her at the bus stop and sometimes she plays with the neighborhood kids for an hour or two and sometimes we go pick up Lewis at his school.
So, what's a gal to do when her kids are away? Well, good news for me, too. I'm going back to work this week, teaching a condensed schedule of 2 days a week at the Art Institute. I'm prepping my classes 100% before the first day, which is a first. And, so my days are filled with work right now. That's a good thing. If I didn't have that I don't know what I would do or what my mood would bring.
I dunno. It's been hard to write lately. I don't feel the same verve for words that I felt a few weeks back. Part of it is because the stress isn't high pitched and not hitting those chords in my brain that make me want to express myself. Maybe I'm tired and need to be OK with not always producing things... producing money with fundraising, producing art because I need to expunge the awfulness of cancer, writing because I need the world to know what it really means to have a child with cancer. Yeah, I'm definitely burned out.
But, that being said, Bea is not burned out and she's more important than all that stuff. So, that keeps me going day in and day out. She's happy and her happiness is all that matters.
Going back to school has ultimately been good for the entire family. There's a sense of normalcy that we haven't had in some months. That lingering feeling that something's not quite right is always present but it's not chirping so loud right now. And, that's just with me. Bea is another story.
She's thrilled to be back at school. The routine is pretty much the same as in the fall. I have to drag her out of bed. She watches the Pink Panther or the Jetsons or some other old school cartoon while she eats her breakfast. She procrastinates on getting dressed and minutes before the bus comes she decides she has to go potty. Same old. Same old. Then I get her at the bus stop and sometimes she plays with the neighborhood kids for an hour or two and sometimes we go pick up Lewis at his school.
So, what's a gal to do when her kids are away? Well, good news for me, too. I'm going back to work this week, teaching a condensed schedule of 2 days a week at the Art Institute. I'm prepping my classes 100% before the first day, which is a first. And, so my days are filled with work right now. That's a good thing. If I didn't have that I don't know what I would do or what my mood would bring.
I dunno. It's been hard to write lately. I don't feel the same verve for words that I felt a few weeks back. Part of it is because the stress isn't high pitched and not hitting those chords in my brain that make me want to express myself. Maybe I'm tired and need to be OK with not always producing things... producing money with fundraising, producing art because I need to expunge the awfulness of cancer, writing because I need the world to know what it really means to have a child with cancer. Yeah, I'm definitely burned out.
But, that being said, Bea is not burned out and she's more important than all that stuff. So, that keeps me going day in and day out. She's happy and her happiness is all that matters.
Saturday, March 24, 2012
Reflections on the Beach
Nothing better said than in a photo!
The images document our wonderful family trip to Blue Mountain Beach, FL with Grandma and Grandpa from England.
The images document our wonderful family trip to Blue Mountain Beach, FL with Grandma and Grandpa from England.
Sunday, March 18, 2012
First Pittsburgh Visit
Tuesday: We arrive at Pitt in early afternoon and get limo'd to the hotel, compliments of the hospital. We settle in, walk several blocks to find some dinner at a little deli and swim in the pool before going to bed. Easy day.
Wednesday: MRI and no eating after 7am. I woke Bea up to a huge breakfast at 6:30am. She ate and went back to sleep for a bit. Her MRI wasn't scheduled until 3pm and we needed to get to the hospital by 2. So, we had time to kill and hung out in the hotel. Bea played games and watched cartoons on her new Kindle Fire (thank you, donators!). We drew some, too. I watched the news. It was a pretty lazy morning.
We got the hospital via hotel shuttle. The MRI does not require sedation and they had a nice alternative - wearing special goggles and watching a selected DVD. We decided to try this and see how it went. Bea did not move until the last few minutes of her 45 minute scan. So, it seems that from here on out we won't need sedation for MRIs at this hospital and Bea can eat whatever she likes, whenever she likes.
Thursday: Bea had her first vaccine treatment. We met Dr. Jackaki, the doctor overseeing the trial. She's very nice and very honest. I like that. I saw Bea's MRI from the day before and it appears that the radiation got rid of a lot of the cancer. It was a relief to see. That being said, there is a cyst enmeshed within the cancer area that is part of it all that has not been diminished much. That is an area of concern for the doctor as far as causing problems for Bea down the pike. If the vaccine causes any swelling, which it can, this cyst will behave like a sponge. This can happen at any time, not just the 48 hours post-injection. So, we need to keep watch hour by hour, day by day, until Bea is through with the trial. That could be up to 2 years.
The experience to get the vaccine was pretty much what I expected - a long day at the hospital. In order to get the shot Bea has to have blood drawn. Then that's tested and then she can get her shot. It's just to make sure that her blood count and hemoglobin (iron) is OK. Her appointment was at 9:00 and we got out of there at 3:30 on the nose, just in time to meet with our limo service to get to the airport.
Then dinner at TGI Fridays in the airport, waiting for the plane and getting home. It was a long day but well worth it.
Wednesday: MRI and no eating after 7am. I woke Bea up to a huge breakfast at 6:30am. She ate and went back to sleep for a bit. Her MRI wasn't scheduled until 3pm and we needed to get to the hospital by 2. So, we had time to kill and hung out in the hotel. Bea played games and watched cartoons on her new Kindle Fire (thank you, donators!). We drew some, too. I watched the news. It was a pretty lazy morning.
We got the hospital via hotel shuttle. The MRI does not require sedation and they had a nice alternative - wearing special goggles and watching a selected DVD. We decided to try this and see how it went. Bea did not move until the last few minutes of her 45 minute scan. So, it seems that from here on out we won't need sedation for MRIs at this hospital and Bea can eat whatever she likes, whenever she likes.
 |
| Waiting for the MRI |
 |
| A late rooftop lunch after a late MRI. |
Thursday: Bea had her first vaccine treatment. We met Dr. Jackaki, the doctor overseeing the trial. She's very nice and very honest. I like that. I saw Bea's MRI from the day before and it appears that the radiation got rid of a lot of the cancer. It was a relief to see. That being said, there is a cyst enmeshed within the cancer area that is part of it all that has not been diminished much. That is an area of concern for the doctor as far as causing problems for Bea down the pike. If the vaccine causes any swelling, which it can, this cyst will behave like a sponge. This can happen at any time, not just the 48 hours post-injection. So, we need to keep watch hour by hour, day by day, until Bea is through with the trial. That could be up to 2 years.
The experience to get the vaccine was pretty much what I expected - a long day at the hospital. In order to get the shot Bea has to have blood drawn. Then that's tested and then she can get her shot. It's just to make sure that her blood count and hemoglobin (iron) is OK. Her appointment was at 9:00 and we got out of there at 3:30 on the nose, just in time to meet with our limo service to get to the airport.
Then dinner at TGI Fridays in the airport, waiting for the plane and getting home. It was a long day but well worth it.
Tuesday, March 13, 2012
We're Off to Pittsburgh
Bea and I are off to Pittsburgh for 3 days for her first treatment. Today is just a travel day. Bea will have an MRI tomorrow to make sure she's healthy enough for treatment. Also, it's the time we would have had a post-radiation MRI anyway so I'll finally get to see what radiation did for her. Lastly, she'll have her vaccine shot on Thursday morning.
I'm a bag of emotions today. Super nervous about getting there and finding my way around what it supposedly a large facility. I'm nervous about her MRI. It means I'll have to take another real look at Bea's cancer. I hate it but it has to be done. And, there is the possibility that they will deem Bea unfit and not treat her this time. So, there's a lot I need to brace myself for, just in case things don't go the way I want.
Beatrice is generally doing well but is not looking forward to this trip. She knows she's getting a shot. She hates shots. And, her grandparents from the UK are here and she feels like she's missing out on fun stuff by leaving for a few days. That's probably true but we'll have some fun in Pitt. It's not going to be all doctor visits. We'll swim in the hotel pool, hit the treadmill, play games and read books on her new Kindle Fire, draw and find new foods to try out while we're there.
Beatrice has been showing some weakness in her left leg for the past week. It's not just me and her dad seeing it. Her physical therapist saw yesterday and we discussed. It is causing her to lose her balance and she is falling sometimes. So, we're keeping an eye on this and will be in contact with her doctor should it progress. Hopefully, the vaccine will do some damage to the cancer and her balance will return.
I'm a bag of emotions today. Super nervous about getting there and finding my way around what it supposedly a large facility. I'm nervous about her MRI. It means I'll have to take another real look at Bea's cancer. I hate it but it has to be done. And, there is the possibility that they will deem Bea unfit and not treat her this time. So, there's a lot I need to brace myself for, just in case things don't go the way I want.
Beatrice is generally doing well but is not looking forward to this trip. She knows she's getting a shot. She hates shots. And, her grandparents from the UK are here and she feels like she's missing out on fun stuff by leaving for a few days. That's probably true but we'll have some fun in Pitt. It's not going to be all doctor visits. We'll swim in the hotel pool, hit the treadmill, play games and read books on her new Kindle Fire, draw and find new foods to try out while we're there.
Beatrice has been showing some weakness in her left leg for the past week. It's not just me and her dad seeing it. Her physical therapist saw yesterday and we discussed. It is causing her to lose her balance and she is falling sometimes. So, we're keeping an eye on this and will be in contact with her doctor should it progress. Hopefully, the vaccine will do some damage to the cancer and her balance will return.
Friday, March 9, 2012
Puppy Postcards!
One of my favorite design clients had a great idea to keep Bea's spirits up a few weeks back. Her name is Renee and she co-owns Bop & Rocksie (http://www.bopandrocksy.com/), a business that makes adorable accessories for your dogs and puppies. Well, she asked if Bea likes dogs. And, well, yeah, Bea is crazy about dogs.
So, Renee asked if she could send Beatrice a few puppy postcards. Well, she must have a LOT of friends she told about this. Bea has received a couple dozen puppy postcards from gals all over the country. A day has not passed when one didn't arrive. Bea loves them. A few of her absolute favorites are taped to her bedroom wall and she puts the rest in a little pink gift bag and keeps in a special place on her bookshelf. She reads them all the time and is very careful not to lose this special bag. Those of you who know Beatrice know that she can be a bit messy and loses things all the time.
The gist of this post is first to thank all of the great ladies who have corresponded with Bea. You lightened the day for all of us. Second, if you have a cute postcard that you've been waiting to use for someday or someone special, send it to Bea! If you are wanting to mail a card just email me at sweetbeafund@gmail.com and I'll get you a mailing address.
So, Renee asked if she could send Beatrice a few puppy postcards. Well, she must have a LOT of friends she told about this. Bea has received a couple dozen puppy postcards from gals all over the country. A day has not passed when one didn't arrive. Bea loves them. A few of her absolute favorites are taped to her bedroom wall and she puts the rest in a little pink gift bag and keeps in a special place on her bookshelf. She reads them all the time and is very careful not to lose this special bag. Those of you who know Beatrice know that she can be a bit messy and loses things all the time.
The gist of this post is first to thank all of the great ladies who have corresponded with Bea. You lightened the day for all of us. Second, if you have a cute postcard that you've been waiting to use for someday or someone special, send it to Bea! If you are wanting to mail a card just email me at sweetbeafund@gmail.com and I'll get you a mailing address.
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