I know we have been throwing this word around the past week due to the Holidays. Thankful. What does that word mean to you? Happy? Appreciative? Relieved? We can say we are so thankful for many things, but I wonder if people truly understand or mean what they are saying. I'm not saying that people are using the word haphazardly, but I know I used to use it that way. I would say so many times, I am so thankful that I never had a baby with a serious illness, somebody must have known I wouldn't handle that too well. or I am so thankful that isn't my family going through that crisis or tragedy. and then I would also say things like I am so thankful for Fridays, or I am thankful for family, or thank goodness its sunny out today. See what I am getting at? I was very happy about some of those things, and other things I was appreciate, and even others relieved. It wasn't until this year, that I think that word and meaning has taken on a new light. I don't use it as often. And not because I am not thankful for things, but because we have been very fortunate with some very life altering things, that I save it for the "big" guns.
This year all my friends were posting what they were thankful for everyday on FaceBook. And they had some very good things on there. Friends, family, shelter, a job, etc. And its true, I am happy that we have those things as well, but when it came to what I was thankful for...one thing came to mind every single day. St. Jude. I am in debt to them and so very thankful that they gave us another Thanksgiving to spend with Lucy. If it weren't for them, I don't know if we would have had that honor. Irony...11 months ago, if you asked me about St. Jude, I probably couldn't have told you anything. Now, people are afraid to ask because I can talk about it for hours ;)
Speaking of the wonderful Thanksgiving, it was the first family event we have gone to since Christmas last year. It was so nice to walk into grandma and grandpa Weber's house and be greeted with warm hearts and hugs. It was nice to chat with family and let the kids run and play. It was nice to be normal. And I appreciate it even more than I ever have before. Lucy had a blast with her cousins, there was little to no talk about cancer, and we were around "normal" people instead of celebrating another holiday with our cancer crew. Don't get me wrong, I love my new cancer family, but they understand.
So I could only think of one thing to truly be thankful for this year, but in doing so, I have a new appreciation for many things. Listed below are a few:
1. our amazing support system. Family, friends, and even strangers who have fallen in love with our Lucy
2. our cancer family because they understand exactly what we are going through and provide insight and sometimes just a friendly and encouraging smile
3. our employer. without them, we would not be in the situation we are. Many people have sacrificed time with their families so we could take care of ours
4. our home. I love our tiny mansion
5. my son's school. He has amazing teachers that help us through this and work with us
6. Steve Mazan. He has made me look at life differently and has forced me to decide what I want to be when I grow up. It gives new meaning to my life and I'm excited about reaching that goal.
7. Therapy. Without it, I would be an emotional wreck (not that it doesn't happen from time to time)
8. medication...lol goes with #7!
9. Chemo--because with the vile drug, I wouldn't have the opportunity to laugh at my lucy everyday
10. Zach, Jack, Taco, and Lucy. And just because they are #10 doesn't mean they are last in line..this list is in no particular order. I appreciate Zach for his tolerance, new sense of patience, and for being my other half when I needed help getting things done. Jack because he is turning into a kind hearted little boy. He has been very patient with our circumstances, and has to change his entire life for his sister. while we have our ups and downs, he has done so wonderfully and continues to do so with so much love for Lucy. Jack is also smiling a lot more these days. That makes my heart happy. He's a funny kid that makes me laugh, just like his dad. Lucy helps me remember everyday what hell I must have put my mother through ;) ha! Lucy is bright, funny, and unique. I love her spirit and old soul. She reminds to stop and smell the roses. and Taco...Taco helps me fall asleep every night by snuggling right by my side. Taco helps me to calm down at night by sitting with me in my chair to unwind. Taco is a champ at taking Lucy on. She torture him all day which allows us to work on our laptops for work. And Taco makes our life a little more normal.
Last but not least...I am thankful for this blog. I am thankful I can write down my feelings and thoughts and move them from my head. I am thankful that I have loyal readers who give me feedback. I am thankful I have one place to store information about our incredible journey and have it documented so when Lucy has children of their own, they can see how strong their mom was. And I love this blog because I am very proud of it. I feel like I am accomplishing something despite what horrible thing has happened in our life.
Happy Thanksgiving to all of you, I appreciate our fans.
Saturday, November 26, 2011
Thursday, November 17, 2011
Quick update
We are home from Memphis, drove all night so we could sleep in our bed and came in around 4 am and I'm exhausted! Today is going to be a nap day for me. Not sure about Lucy, she is on dex. Already a dex monster too. BUT......we got our spinal results and if you remember this is a big one because 2 spinals ago we had some abnormal cells and to ensure she wasn't relapsed, we had to get 2 clear ones in row. The last one was clear and yesterday's was clear too!! yay!!!! still Cancer free! woo hoo!
Upcoming Lucy events:
Saturday 8 am at Eastland Mall. Give Thanks Walk for St. Jude. Lucy is a part of opening ceremonies and this is a great event to bring awareness about pediatric cancer and St. Jude. Also, as we were waiting for our spinal results, they were not coming in on time and I was worried, I found out that 12 families were diagnosed with leukemia in the past 24 hours and the labs were swamped. PLEASE help us find a cure. That is a ridiculous number! heck 1 is way too many.
Sunday from 11 am-3 Pm Holiday open house with LOTS of vendors in Covell. Shop for Lucy event. All proceeds go towards her physical therapy costs. We chose to do a local center that deals with children instead of the driving an hour away each week to an adult center, so St. Jude does not cover the cost of that. We pay $105 per every 15 minutes. Insurance covers some of it, but won't starting in January and she goes every week.
Thank you for your continued support and for loving our Lucy as much as we do. also, stay tuned for a new video from our trip to Memphis ;)
Upcoming Lucy events:
Saturday 8 am at Eastland Mall. Give Thanks Walk for St. Jude. Lucy is a part of opening ceremonies and this is a great event to bring awareness about pediatric cancer and St. Jude. Also, as we were waiting for our spinal results, they were not coming in on time and I was worried, I found out that 12 families were diagnosed with leukemia in the past 24 hours and the labs were swamped. PLEASE help us find a cure. That is a ridiculous number! heck 1 is way too many.
Sunday from 11 am-3 Pm Holiday open house with LOTS of vendors in Covell. Shop for Lucy event. All proceeds go towards her physical therapy costs. We chose to do a local center that deals with children instead of the driving an hour away each week to an adult center, so St. Jude does not cover the cost of that. We pay $105 per every 15 minutes. Insurance covers some of it, but won't starting in January and she goes every week.
Thank you for your continued support and for loving our Lucy as much as we do. also, stay tuned for a new video from our trip to Memphis ;)
Monday, November 14, 2011
Lucy Weber's Page
Lucy Weber's Page
This Saturday all over the country, people will be walking and raising awareness for childhood cancer. They will be raising money and walking to say thank you to St. Jude for saving lives everyday. This Saturday, Lucy is walking at Eastland mall to say thank you. She is also going to be a part of the opening ceremony. We would love for you to join us. And if you can't, you can still make a donation. We haven't met our goal yet! and we are so close to our deadline. Will you please help us give thanks this holiday season to one of our favorite places in the entire world.
click on the link above to see our page!
This Saturday all over the country, people will be walking and raising awareness for childhood cancer. They will be raising money and walking to say thank you to St. Jude for saving lives everyday. This Saturday, Lucy is walking at Eastland mall to say thank you. She is also going to be a part of the opening ceremony. We would love for you to join us. And if you can't, you can still make a donation. We haven't met our goal yet! and we are so close to our deadline. Will you please help us give thanks this holiday season to one of our favorite places in the entire world.
click on the link above to see our page!
Tuesday, November 8, 2011
What does a Banana taste like?
Wowza? Its been a long time since I posted. We have been so busy, matter of fact, Zach and I remarked how we are much busier now working from home than we were when we went into the office. You have to master the art of multi-tasking. Not as easy as you think when you have a 3 year old going on 13 running around the house who also happens to have low numbers the past 3 weeks. GRRRR So everything must be made fresh for her and disposed of every hour, we have to try to keep things clean and sanitary..which isn't going so well. Plus with work and deadlines and Jack's school and extra curricular, we really can't wait until we have a chance to sit down and breathe with no obligations on our plate. I know who are we kidding? That won't happen til the kids are out of the house, and then of course, we will miss it, I'm told.
Lucy has had a low ANC despite being on steroids. Which isn't a good thing. Not terrible, but not fantastic. We are in the house more, which we know is exactly how all winter is going to be. And she also has a horrible cold. Really bad snotty nose and a cough that doesn't sound so hot. So of course, we monitor for fevers all the time. The lower the ANC, the higher risk of fever, and then we have to make sure we get to the hospital ASAP if it does happen, so tensions are a little high around here. She is also starting to lose her hair again :( We aren't sure why. They haven't changed her doses of chemo. I have heard a few different theories that the lower the ANC, the more likely for hair to thin out again. I was giving her a bath the other day and noticed it when I was washing her hair. Plus she has some bald spots on the top of her head. She was quite upset about this. Last time she didn't care, but now she says "I don't want to lose my hair again". She has become self conscious no matter what we tell her. I hope it stops...
I can sit here and type and tell you everything that is going on in our household. And you can read it and process it, but you cannot fully appreciate it unless you are walking in our shoes or experiencing this for yourself. We are constantly at a stress level in this household that is not good for our health. We like to liken it to the emergency system the government has set up. Are we on blue, orange or red....we are usually on high alert and orange. Which means our adrenaline is always pumping, and our body is always in a fight or flight mode, which isn't good. Its like when the little boy called wolf. When we really need for our body to protect us from something life threatening, we may not realize it since we are always in that mode anyhow. Our judgement isn't always clear, and decision making is hindered at times. Of course, we don't realize this at the time, but its science. It explains why Jack is having problems concentrating at school. It explains why sometimes its hard to not want to just sleep all the time. It explains why we take medication. It explains our emotional state and why Zach and I fight over stupid stuff. And its also a state that Zach, Jack and I are constantly in, but not Lucy. Lucy is the only one around here who is "normal" with her new "abnormal". Funny how that works. Anyhow, my point? I am trying to tell you what a banana tastes like to me. Its hard to explain and get it just right. You may feel empathy for us, maybe not. Not that I am going for that, but its how we communicate. Until you take a bite of a banana yourself, you can truly never know what it tastes like. And even when you do take a bite, I bet your description and experience with the taste, is still probably different than mine. And this is true with anybody's life, cancer or no cancer. But when you experience a tragedy, the banana has a much more distinct taste and its harder to describe to others. Even Zach and I taste it differently, as does Jack. And we have a hard time trying to tell each other what we think it tastes like. So think about that. Literally and figuratively. How would you explain what a banana tastes like to somebody who has never had one before? It's hard. Banana's are a distinct taste and texture. And of course the riper the banana, makes it even more challenging to describe because the flavor changes as the banana changes.
So I am trying to tell you how my banana tastes with each blog post I do, and its hard to describe. And I hope you get a better banana than we have. We aren't liking how ours tastes so much. We are getting used to the taste, but really wish it was a sweeter more savory taste. I can't wait to be done with this banana so we can have a new one.
Lucy has had a low ANC despite being on steroids. Which isn't a good thing. Not terrible, but not fantastic. We are in the house more, which we know is exactly how all winter is going to be. And she also has a horrible cold. Really bad snotty nose and a cough that doesn't sound so hot. So of course, we monitor for fevers all the time. The lower the ANC, the higher risk of fever, and then we have to make sure we get to the hospital ASAP if it does happen, so tensions are a little high around here. She is also starting to lose her hair again :( We aren't sure why. They haven't changed her doses of chemo. I have heard a few different theories that the lower the ANC, the more likely for hair to thin out again. I was giving her a bath the other day and noticed it when I was washing her hair. Plus she has some bald spots on the top of her head. She was quite upset about this. Last time she didn't care, but now she says "I don't want to lose my hair again". She has become self conscious no matter what we tell her. I hope it stops...
I can sit here and type and tell you everything that is going on in our household. And you can read it and process it, but you cannot fully appreciate it unless you are walking in our shoes or experiencing this for yourself. We are constantly at a stress level in this household that is not good for our health. We like to liken it to the emergency system the government has set up. Are we on blue, orange or red....we are usually on high alert and orange. Which means our adrenaline is always pumping, and our body is always in a fight or flight mode, which isn't good. Its like when the little boy called wolf. When we really need for our body to protect us from something life threatening, we may not realize it since we are always in that mode anyhow. Our judgement isn't always clear, and decision making is hindered at times. Of course, we don't realize this at the time, but its science. It explains why Jack is having problems concentrating at school. It explains why sometimes its hard to not want to just sleep all the time. It explains why we take medication. It explains our emotional state and why Zach and I fight over stupid stuff. And its also a state that Zach, Jack and I are constantly in, but not Lucy. Lucy is the only one around here who is "normal" with her new "abnormal". Funny how that works. Anyhow, my point? I am trying to tell you what a banana tastes like to me. Its hard to explain and get it just right. You may feel empathy for us, maybe not. Not that I am going for that, but its how we communicate. Until you take a bite of a banana yourself, you can truly never know what it tastes like. And even when you do take a bite, I bet your description and experience with the taste, is still probably different than mine. And this is true with anybody's life, cancer or no cancer. But when you experience a tragedy, the banana has a much more distinct taste and its harder to describe to others. Even Zach and I taste it differently, as does Jack. And we have a hard time trying to tell each other what we think it tastes like. So think about that. Literally and figuratively. How would you explain what a banana tastes like to somebody who has never had one before? It's hard. Banana's are a distinct taste and texture. And of course the riper the banana, makes it even more challenging to describe because the flavor changes as the banana changes.
So I am trying to tell you how my banana tastes with each blog post I do, and its hard to describe. And I hope you get a better banana than we have. We aren't liking how ours tastes so much. We are getting used to the taste, but really wish it was a sweeter more savory taste. I can't wait to be done with this banana so we can have a new one.
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