We would love it if you can make a donation to our Walk For Wishes team!
Mollie has had another good week and I can honestly say I didn't think about cancer or relapse very much! The biggest problem she faced was something about silly bands at school!
We got our final approval for Mollie's Make-a-Wish trip and the tickets and other info should be arriving any day. Mollie and Lucy are so excited that we get to take a limousine to the airport!! Matt and I are pretty excited too- we don't have to drive or pay for parking!
I am still struggling to figure out my new, post-cancer treatment normal. Of course this is complicated by living in a new place. Everything in our lives is vastly different from what it was two years ago. I'm still trying to find my place.
We are all enjoying the cooler fall weather! The 49ers are playing the Panthers next weekend. Neither team has won a game this season, but Mollie and Lucy have declared themselves Panthers fans and Matt and I both grew up in the bay area so we thought it would be a fun game to go to. Anyone have tickets they want to get rid of?
Happy Weekend everyone!
10.15.2010
10.07.2010
Clinic Update
We went to Augusta yesterday for the day for the ribbon-cutting ceremony for the newly remodeled hem/onc clinic. We were so happy to see the familiar faces of the doctors, nurses, friends, and staff that have helped us along this journey. The new clinic is a vast improvement, but the staff are really the ones who make the clinic.
Side note: I won't be making that CLT-Augusta round-trip in one day any time soon again. It is such a long drive (Michelle, sorry we didn't drop by. There was just no time!!). We checked on our house- depressing to see it sitting there empty. It smells stale and closed up. Not our home any more.
Mollie had clinic today in Charlotte. It feels strange to be starting up at a new clinic for follow-up, but Dr. J and his nurse, Jackie, are very sweet. The nurse is great with Mollie, finding her the foamy stickers and shiny band-aids that she requests! The port access was swift and it worked perfectly. Mollie's counts are good- WBC 8.2 and ANC 5100. Wow! I am learning a little bit about what kind of CBC numbers to expect after treatment, but it still looks weird to me. Her platelets are down a lot from last month, but well within the normal range, and her hemoglobin is about the same as last month. She also had a palpable lymph node in her neck, which they will watch. I am happy her counts are great, but I just can't let my guard down. Matt and I know how quickly things can go from fine to critical. Any little thing, like the lymph node, really gets me worried! However, we got the go ahead to schedule Mollie's port removal surgery (will have that done in Augusta) for mid-November.
I feel like I should be really pleased with how Mollie is doing, but instead I am just uneasy. With treatment, there were clear benchmarks and we knew when to worry and when to breathe easy. Now, things like the lymph node and skin irritation, make me want to request a bone marrow biopsy right away!! PTSD is putting it mildly.
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| Mollie and Dr. V at the ribbon cutting. He diagnosed her leukemia in 2008. |
Mollie had clinic today in Charlotte. It feels strange to be starting up at a new clinic for follow-up, but Dr. J and his nurse, Jackie, are very sweet. The nurse is great with Mollie, finding her the foamy stickers and shiny band-aids that she requests! The port access was swift and it worked perfectly. Mollie's counts are good- WBC 8.2 and ANC 5100. Wow! I am learning a little bit about what kind of CBC numbers to expect after treatment, but it still looks weird to me. Her platelets are down a lot from last month, but well within the normal range, and her hemoglobin is about the same as last month. She also had a palpable lymph node in her neck, which they will watch. I am happy her counts are great, but I just can't let my guard down. Matt and I know how quickly things can go from fine to critical. Any little thing, like the lymph node, really gets me worried! However, we got the go ahead to schedule Mollie's port removal surgery (will have that done in Augusta) for mid-November.
I feel like I should be really pleased with how Mollie is doing, but instead I am just uneasy. With treatment, there were clear benchmarks and we knew when to worry and when to breathe easy. Now, things like the lymph node and skin irritation, make me want to request a bone marrow biopsy right away!! PTSD is putting it mildly.
9.30.2010
Hope
Today is the last day of Childhood Cancer Awareness month, but these kids will battle all year long. There is HOPE though. A news article came out yesterday about a new treatment for neuroblastoma, that combines chemotherapy with immunotherapy. They halted the clinical trial early because the immunotherapy was so much more effective than the standard therapy. This same approach is now being tried with other pediatric cancers. There is hope!
Also, I have been in contact with a study coordinator at Stanford who asked me to post this to help her recruit subjects (adults) for this program/study:
Lastly, if you are able (and believe me I know it is hard in this economy), please consider donating to our team for the Walk for Wishes to raise funds for the Make-a-wish foundation. They do wonderful things for kids!
Also, I have been in contact with a study coordinator at Stanford who asked me to post this to help her recruit subjects (adults) for this program/study:
Stanford University is running a 6-week workshop that gives people who haveIf you know anyone who qualifies, please forward this information to them. This is an online workshop so I don't think you need to be local to participate.
survived cancer two or more times the skills needed to regain their life back
after cancer and take control of their health. Participants also connect with
other cancer survivors. Go to http://cancersurvivors.stanford.edu to learn more and sign up.
Lastly, if you are able (and believe me I know it is hard in this economy), please consider donating to our team for the Walk for Wishes to raise funds for the Make-a-wish foundation. They do wonderful things for kids!
9.28.2010
Potpourri
This off-therapy business is uncharted territory for us. Mollie is losing her hair, again. She has bouts of itchy spots, like hives or bug bites, that respond to steroid cream or benadryl. And she is emotional. Matt and I are assuming all the adjustments going on in Mollie's body explain these different symptoms. We have been poisoning her with chemo for almost 2.5 years, and suddenly, it is gone.
My feeling is that the hair loss, which has slowed down considerably so it is more like "thinning", is probably due to her last treatment with vincristine in August. Apparently, some batches of that drug, especially in combination with a virus, can cause hair loss. It started when she was hospitalized in early Sept., so the timing makes sense.
A lot of children have skin and allergy problems after treatment. Maybe the immune system goes into overdrive once the chemo is withdrawn. We will keep a close eye, with the clinic phone number close at hand, and wait. The good news is Mollie has lots of energy! She has finally reached a point where 2-year old Lucy can't keep up with her (it used to be the other way around). I love it!
We are going to apply some of that energy to the Walk for Wishes this year. This walk raises funds for the Make-a-Wish foundation. Make-a-Wish does not give money to cancer research or treatment (we have raised money for LLS in the past 2 years), but it goes to something equally important: providing joy to children (& families) in need. Mollie and Lucy are really, really looking forward to going to Disney World in December, so we thought this would be a great way to channel the excitement! The walk is Oct. 23 at Carowinds in Charlotte. We welcome anyone who wants to join our team and walk with us. Please consider making a donation to our team in honor of Mollie through this link.
My feeling is that the hair loss, which has slowed down considerably so it is more like "thinning", is probably due to her last treatment with vincristine in August. Apparently, some batches of that drug, especially in combination with a virus, can cause hair loss. It started when she was hospitalized in early Sept., so the timing makes sense.
A lot of children have skin and allergy problems after treatment. Maybe the immune system goes into overdrive once the chemo is withdrawn. We will keep a close eye, with the clinic phone number close at hand, and wait. The good news is Mollie has lots of energy! She has finally reached a point where 2-year old Lucy can't keep up with her (it used to be the other way around). I love it!
We are going to apply some of that energy to the Walk for Wishes this year. This walk raises funds for the Make-a-Wish foundation. Make-a-Wish does not give money to cancer research or treatment (we have raised money for LLS in the past 2 years), but it goes to something equally important: providing joy to children (& families) in need. Mollie and Lucy are really, really looking forward to going to Disney World in December, so we thought this would be a great way to channel the excitement! The walk is Oct. 23 at Carowinds in Charlotte. We welcome anyone who wants to join our team and walk with us. Please consider making a donation to our team in honor of Mollie through this link.
9.21.2010
When Kids and Wine Go Together
The cure rates for pedatric cancers, leukemia in particular, have shot way up in the last 30 years. Still, the 5 year event-free survival rate for ALL is around 85%. That means that if a whole classroom of kids was diagnosed with ALL, within 5 years ~4 would relapse or die. I don't know about you, but I would find a different school. Unfortunately, it doesn't work that way. Cancer can strike any child at any time. It could be your son or daughter, grandchild, niece, nephew, cousin, neighbor, or someone in your child's class.
There are a lot of "facts" about childhood cancers being thrown around on the internet and I don't have a lot of time or energy to fact check, but the bottom line is the way to prevent and cure cancer is through research and that requires money. Pediatric cancer does not get a lot of research money. Why? It's not profitable for big pharma companies, it is relatively rare (so hard to get enough numbers to do big studies), and (I think) the kids can't advocate for themselves (and their parents are too strapped from the whole ordeal).
What does this have to do with wine? Well, it is one of the few "gold ribbon" products that you can purchase to help support childhood cancer organizations (you can choose between two). Order your bottle of 2009 ONEHOPE Arroyo Seco Reserve Pinot Noir before the end of September and $5 per bottle will be donated to Alex's Lemonade Stand or the Children's Miracle Network (both awesome organizations).
It is Childhood Cancer Awareness month. How many gold ribbons have you seen?
There are a lot of "facts" about childhood cancers being thrown around on the internet and I don't have a lot of time or energy to fact check, but the bottom line is the way to prevent and cure cancer is through research and that requires money. Pediatric cancer does not get a lot of research money. Why? It's not profitable for big pharma companies, it is relatively rare (so hard to get enough numbers to do big studies), and (I think) the kids can't advocate for themselves (and their parents are too strapped from the whole ordeal).
What does this have to do with wine? Well, it is one of the few "gold ribbon" products that you can purchase to help support childhood cancer organizations (you can choose between two). Order your bottle of 2009 ONEHOPE Arroyo Seco Reserve Pinot Noir before the end of September and $5 per bottle will be donated to Alex's Lemonade Stand or the Children's Miracle Network (both awesome organizations).
It is Childhood Cancer Awareness month. How many gold ribbons have you seen?
9.20.2010
Practically Perfect...
It has been a good week!
Mollie and I went to see the musical Mary Poppins on Tuesday. We got dressed up for the occasion (and she dressed her doll to match). It was fabulous evening. To start off, we got a great (and free) parking spot just a block from the theatre. That left us plenty of time to grab quesadillas before the show. When we got to the theatre, they upgraded our seats... on the house! The show was magical! The new songs (like Practically Perfect) fit seamlessly into the story. It was a fun show and the actors interacted with the audience quite a bit; I think Mollie is starting to appreciate how rich live performances are.
This weekend we took our inaugural family camping trip. There were a few bumps- Liam tipped over in his chair and scraped his face and our old tent broke when we were breaking camp (better than when we were setting up camp)- but all in all it was a good time! The weather was lovely and the park (Pilot Mtn., NC) was very pretty. The kids took to it very well and enjoyed the experience. We are looking forward to doing it again in the near future!
Mollie and I went to see the musical Mary Poppins on Tuesday. We got dressed up for the occasion (and she dressed her doll to match). It was fabulous evening. To start off, we got a great (and free) parking spot just a block from the theatre. That left us plenty of time to grab quesadillas before the show. When we got to the theatre, they upgraded our seats... on the house! The show was magical! The new songs (like Practically Perfect) fit seamlessly into the story. It was a fun show and the actors interacted with the audience quite a bit; I think Mollie is starting to appreciate how rich live performances are.
This weekend we took our inaugural family camping trip. There were a few bumps- Liam tipped over in his chair and scraped his face and our old tent broke when we were breaking camp (better than when we were setting up camp)- but all in all it was a good time! The weather was lovely and the park (Pilot Mtn., NC) was very pretty. The kids took to it very well and enjoyed the experience. We are looking forward to doing it again in the near future!
9.13.2010
Chemo-free Weekend
Friday night we had dinner @ the Pita Pit and spent the evening walking around Uptown. We just took in the sights, sounds, and smells of the BBQ and blues festival that was going on.
The next day we went letterboxing in a local park. This activity really appeals to Mollie because she likes following the clues and finding a surprise. We walked ~2.5 miles and then played at the playground after. We topped the night off with pizza at Brooklyn South (a nod to NYC).
Yesterday we hiked the Big Rocks trail @ Morrow Mtn. state park (~2.5 miles). The weather was exquisite and we enjoyed being out in nature. We spotted lots of interesting moss, mushrooms, and a dung beetle rolling a ball of dung uphill. We took some time to learn a little about dung beetle biology when we got home. The leaves are just starting to turn and fall there and we kept thinking the falling leaves were butterflies flitting by.Mollie enjoyed it all and was ready to head back to school today! She had a great day and is ready for more.
I am a bit of an emotional mess myself. I'm not good with change (who is?) and we have had SO MUCH! Nothing in our life is the same as it was last year at this time. New baby, new city, school, home, doctors, etc. I feel depleted. This battle with leukemia (and all the other life-altering events that have occurred the last 2-ish years) has emptied our emotional, spiritual, financial, and physical reserves. And then some.
I don't want to end this post on a low note, so let me just mention that Mollie and I are going to see the broadway production of Mary Poppins this week! We got tickets on a whim after walking by the theater Friday night. Looking forward to it!
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