A bunch of you have asked us if we have a "donation" account set up, where people could donate money to help pay Alex's medical bills. At first, we thought, "we don't need that, we have insurance", but now we realize that the co-pays, deductibles, and a possible lifetime cap, could really add up quick. We are just getting our heads wrapped around what our insurance will provide us. So, we contacted our bank, and they are in the process of setting up a "donation account" nationwide for people to help us. I will update the blog with the info as soon as we have it available.
Here are some other ways that you can help:
While donations to these organizations doesn't go directly to Alex, it will help these groups help families like us:
Children's Cancer Association (CCA)
http://www.childrenscancerassociation.org/
American Cancer Society (ACS)
http://www.cancer.org/
Doerenbecher Charitable Foundation (DCF)
http://www.ohsu.edu/xd/about/dchf/
Leukemia & Lymphoma Society (LLS)
http://www.leukemia-lymphoma.org/hm_lls
Candlelighters Childhood Cancer Foundation
http://www.candlelighters.org/
Alex will be receiving blood and platelet transfusions from the blood supply of the American Red Cross. Please consider donating blood in Alex's honor here: http://www.givelife.org/.
While Alex won't need a bone marrow transplant, a lot of kids with cancer do. If you are interested in getting your bone marrow tested, and adding your name to the bone marrow donor bank, you can do so here: http://www.marrow.org/.
I also encourage *all* of our friends and family who are pregnant, or who are planing on becoming pregnant to talk to their doctors about cord blood and either donating it, or storing it for your child. You can find out more about this amazing option here:
http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
Sunday, November 30, 2008
A return to "normal"
Yesterday, Alex returned to his more "normal" self. While he is still more tired than he used to be, his funny personality returned.
He was bowling and golfing with some of his Grandparents (on his new Wii game system, given to us by our wonderful neighbors), and laughing. While we have to struggle to get the medication in him, he is slowly "giving in" to the fact that we have to do it.
He is so strong - he helps us flush his PICC line, and talks about how sometimes the icky medicine makes him "spit up", but not other times...
My Grandmother told me recently that it is easier for the person in the hospital, than it is for their family and friends. In this case, I definitely agree. Alex is rolling with the punches. He doesn't always like it, but "it's just life", and "these things happen". Eric and I, and all of you have to deal with the reality of what is happening, and our concern for him is filtered through our life experience. We can't look at this cancer, without reviewing our own experiences with this terrible disease, and coloring our outlook on it. We all know someone who has had cancer, or has had a family or friend fight it. Some of those experiences were positive, some had very sad outcomes.
I am trying to look at Alex's cancer as it's own experience, without looking through a filter. He is a strong young boy, who has been diagnosed with a cancer very rarely found in children. The good news is that it is a very curable cancer (approx 80% first treatment cure rate), and we'll beat it - there is no other option.
Today we did "normal" things: We put up our Christmas lights on the house, and put "Frank" on the roof (for those who don't know us, we have a life-sized dummy that we put in precarious positions on our house each year, trying to hang up our Christmas lights - I'll have to post a picture...). We watched a movie, and did "nap time" too.
Tessa-Lynn is running a slight fever today, and is spitting up a lot. Here is our first test of how well we can keep Alex from getting a cold. We will be doing lots, and lots of hand washing, and not letting Alex "hug" his sister, which he just loves to do!
I hope everyone had a great Thanksgiving - we sure enjoyed having so much family around!
He was bowling and golfing with some of his Grandparents (on his new Wii game system, given to us by our wonderful neighbors), and laughing. While we have to struggle to get the medication in him, he is slowly "giving in" to the fact that we have to do it.
He is so strong - he helps us flush his PICC line, and talks about how sometimes the icky medicine makes him "spit up", but not other times...
My Grandmother told me recently that it is easier for the person in the hospital, than it is for their family and friends. In this case, I definitely agree. Alex is rolling with the punches. He doesn't always like it, but "it's just life", and "these things happen". Eric and I, and all of you have to deal with the reality of what is happening, and our concern for him is filtered through our life experience. We can't look at this cancer, without reviewing our own experiences with this terrible disease, and coloring our outlook on it. We all know someone who has had cancer, or has had a family or friend fight it. Some of those experiences were positive, some had very sad outcomes.
I am trying to look at Alex's cancer as it's own experience, without looking through a filter. He is a strong young boy, who has been diagnosed with a cancer very rarely found in children. The good news is that it is a very curable cancer (approx 80% first treatment cure rate), and we'll beat it - there is no other option.
Today we did "normal" things: We put up our Christmas lights on the house, and put "Frank" on the roof (for those who don't know us, we have a life-sized dummy that we put in precarious positions on our house each year, trying to hang up our Christmas lights - I'll have to post a picture...). We watched a movie, and did "nap time" too.
Tessa-Lynn is running a slight fever today, and is spitting up a lot. Here is our first test of how well we can keep Alex from getting a cold. We will be doing lots, and lots of hand washing, and not letting Alex "hug" his sister, which he just loves to do!
I hope everyone had a great Thanksgiving - we sure enjoyed having so much family around!
Saturday, November 29, 2008
Rare Cancer
Alex's Grammie Gale gave us a book on Non-Hodgkins Lymphomas (NHL), and according to this book, only 800 children per year are diagnosed with NHL's in the United States, and Lymphoblastic Lymphoma is just one of many sub-types of NHL - boy, aren't we lucky (insert sarcasm here)
We had a bad night last night - Alex was really nauseous from the Vincristine and Duanorubicin, and ended up throwing up all over the hallway last night. He woke up complaining that his stomach hurt four times. I ended up sleeping with him in his little bed for half the night. Then, Tessa-Lynn woke up with all of the commotion. We tried giving Alex some Benadryl for nausea, and that didn't work, and we couldn't give him another dose of Zofran until noon today.
He's much more lethargic than normal - and this kid is always a bundle of energy. He's exhausted, and so are we - and we still have almost 2 years to go.
I got a statement from the hospital listing the services received, and what they billed our insurance. For the period of 11/11 - 11/17, the bill was over $49,000 - of that, almost $16,000 was pharmaceuticals. This statement doesn't even cover the cost of the doctors...I don't know how anyone can go through this without health insurance. Hopefully, our insurance will pay for most of this, but to be honest, we are still trying to figure out what they will or won't pay for, and what, if any, the lifetime cap is. At this rate, we'll blow past one million dollars in Alex's coverage over the next two years!
Enough of the blahs - we have family and friends, and even strangers supporting us as we navigate this difficult path. We'll make it...I know we will!
We had a bad night last night - Alex was really nauseous from the Vincristine and Duanorubicin, and ended up throwing up all over the hallway last night. He woke up complaining that his stomach hurt four times. I ended up sleeping with him in his little bed for half the night. Then, Tessa-Lynn woke up with all of the commotion. We tried giving Alex some Benadryl for nausea, and that didn't work, and we couldn't give him another dose of Zofran until noon today.
He's much more lethargic than normal - and this kid is always a bundle of energy. He's exhausted, and so are we - and we still have almost 2 years to go.
I got a statement from the hospital listing the services received, and what they billed our insurance. For the period of 11/11 - 11/17, the bill was over $49,000 - of that, almost $16,000 was pharmaceuticals. This statement doesn't even cover the cost of the doctors...I don't know how anyone can go through this without health insurance. Hopefully, our insurance will pay for most of this, but to be honest, we are still trying to figure out what they will or won't pay for, and what, if any, the lifetime cap is. At this rate, we'll blow past one million dollars in Alex's coverage over the next two years!
Enough of the blahs - we have family and friends, and even strangers supporting us as we navigate this difficult path. We'll make it...I know we will!
Friday, November 28, 2008
Chemo side effects
As Alex's face puffs up from the steroids, I can't help but think of the other side effects of the medicine that we are pushing into his body during the Induction Phase...
Prednisone: (oral tablet - 2 times a day) Increased appetite (oh yes, we have seen that), weight gain, fluid retention, full or round "moon" face, stomach upset, irritability and mood changes (yah - we know that one!), less resistance to infection and longer time for healing, craving for salty foods (yep).
Vincristine: (IV drip - once a week on Friday) Constipation (he's on laxatives daily...), stomach pain (we had that two nights ago, he couldn't sleep, and just cried while we had him in bed with us), hair loss (not yet, but any day now...) irritation of nerves: numbness and tingling of fingers and toes, muscle weakness (I think when he complains of his arms and legs hurting, that this is what he is experiencing), jaw/joint pain (he said his "teeth hurt" while in the hospital - we think it was this side effect)
Daunorubicin: (IV drip - once a week on Friday) Nausea/vomiting, urine may turn pink/red for 2 days after treatment (yep), hair loss (any day now) low blood counts 1 to 2 weeks after treatment (we are starting to see that now), mouth soars (we saw that in the hospital), heart muscle damage (they are doing echo cardiograms - a heart ultrasound - to make sure this doesn't happen - his heart is very strong and healthy)
Prednisone: (oral tablet - 2 times a day) Increased appetite (oh yes, we have seen that), weight gain, fluid retention, full or round "moon" face, stomach upset, irritability and mood changes (yah - we know that one!), less resistance to infection and longer time for healing, craving for salty foods (yep).
Vincristine: (IV drip - once a week on Friday) Constipation (he's on laxatives daily...), stomach pain (we had that two nights ago, he couldn't sleep, and just cried while we had him in bed with us), hair loss (not yet, but any day now...) irritation of nerves: numbness and tingling of fingers and toes, muscle weakness (I think when he complains of his arms and legs hurting, that this is what he is experiencing), jaw/joint pain (he said his "teeth hurt" while in the hospital - we think it was this side effect)
Daunorubicin: (IV drip - once a week on Friday) Nausea/vomiting, urine may turn pink/red for 2 days after treatment (yep), hair loss (any day now) low blood counts 1 to 2 weeks after treatment (we are starting to see that now), mouth soars (we saw that in the hospital), heart muscle damage (they are doing echo cardiograms - a heart ultrasound - to make sure this doesn't happen - his heart is very strong and healthy)
Methotrexate: (Spinal tap - 2 x per month) Mouth sores, nausea, vomiting, loss of appetite, abnormal liver function tests (twice weekly blood draws are watching for this one)
Asparaginase: (double shot in the thighs - approx twice a month) Loss of appetite, High blood sugar (they are checking his blood work twice a week), allergic reaction (we have an "eppie pen" to give him a shot if he has a reaction - none so far)
Cytarabine: (Spinal tap - once during Induction phase) Nausea, vomiting, loss of appetite, diarrhea, mouth sores
He also has: Oxycoten, Zolfran, Previcid, and Miralax...
He had his Chemo appointment today, and his blood counts are dropping as expected - all is going according to plan - I just hate the plan...
Thursday, November 27, 2008
Thanksgiving
On this Thanksgiving morning, we reflect on the generosity of our friends, family, and strangers who have taken Alex and our family into their hearts.
We have received amazing notes of well wishes & prayers, balloons, flowers, gifts, and food. And I have lost track of how many prayer lists Alex is on - there are no words to describe how completely enveloped we feel in love and support.
Our friends from Alex's playgroup and from his school, donated money to give us dinners from Dinners Done Right (the company prepares meals, and you just stick them in the freezer, and cook when needed). When our friend Melissa dropped off the food at our house, we were overwhelmed with gratitude. She also dropped off gifts for Alex - and handmade cards and a banner from his friends from both his playgroup, and school. We were in tears reading all the wonderful things people had written on the giant "get well soon" card, and looking at all the handmade artwork on the banner (we are hanging it in our downstairs living room).
This Thanksgiving morning, our family is surrounded by Grandpa Jim, Gamma Carol, Gampa Pat, Grandma Diana, Boppa Bob, my sister Elizabeth, and her fiance, Scott. We are also surrounded by all of you who read this blog, and are doing anything and everything you can to help us through this.
We have more to be thankful for this year than ever before. Alex's cancer was caught early, and his prognosis for recovery is excellent. We only have to take the Prednisone for another couple of weeks (yay!) Eric was able to stay at his job, and has the support of his co-workers. We have health insurance to pay for the medications (one of which retails for $750 per month!). We have family and friends who are willing to help at the drop of the hat. We have a (almost) completely remodeled house to keep us warm and safe. We have wonderful birth families who have been rooting for Alex, and their support has been really great.
We can't thank you all enough for everything you have done for us - our hearts are filled with gratitude - I don't know what else to say but THANK YOU...THANK YOU...THANK YOU
We have received amazing notes of well wishes & prayers, balloons, flowers, gifts, and food. And I have lost track of how many prayer lists Alex is on - there are no words to describe how completely enveloped we feel in love and support.
Our friends from Alex's playgroup and from his school, donated money to give us dinners from Dinners Done Right (the company prepares meals, and you just stick them in the freezer, and cook when needed). When our friend Melissa dropped off the food at our house, we were overwhelmed with gratitude. She also dropped off gifts for Alex - and handmade cards and a banner from his friends from both his playgroup, and school. We were in tears reading all the wonderful things people had written on the giant "get well soon" card, and looking at all the handmade artwork on the banner (we are hanging it in our downstairs living room).
This Thanksgiving morning, our family is surrounded by Grandpa Jim, Gamma Carol, Gampa Pat, Grandma Diana, Boppa Bob, my sister Elizabeth, and her fiance, Scott. We are also surrounded by all of you who read this blog, and are doing anything and everything you can to help us through this.
We have more to be thankful for this year than ever before. Alex's cancer was caught early, and his prognosis for recovery is excellent. We only have to take the Prednisone for another couple of weeks (yay!) Eric was able to stay at his job, and has the support of his co-workers. We have health insurance to pay for the medications (one of which retails for $750 per month!). We have family and friends who are willing to help at the drop of the hat. We have a (almost) completely remodeled house to keep us warm and safe. We have wonderful birth families who have been rooting for Alex, and their support has been really great.
We can't thank you all enough for everything you have done for us - our hearts are filled with gratitude - I don't know what else to say but THANK YOU...THANK YOU...THANK YOU
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