Alex had his PICC dressing change today. The IV team always comments on how good Alex is when he gets this done. He just sits there, and watches as they peel off the old adhesive, clean it all up, and re-attach the tube to his arm.
The tube had moved out again another centimeter, which prompted lots of discussion on whether they needed to do an X-ray to see if the catheter was still "centrally located". After an hour, they decided that they didn't need to do it, since it was still drawing blood, and they weren't doing a chemo treatment this week. Also, he gets his Port put in on the 16th, so they won't be using the PICC anymore.
While we were there, the doctors checked his blood counts, because he has been *really* lethargic, and felt warm (but no fever). His blood counts came back at 4100 for the ANC - which is very good. The nurse said that the steroids can artificially keep the ANC numbers up. But, he could also be fighting off the cold Tessa had last week. Once the steroids are done (next week), he should start to loose some of this extra weight, and his appetite should return to normal. Also, the personality changes should fade. He is up to 44 lbs...and so round!
When we got home, Alex wanted some "mommy time" - he just climbs on my lap, and cuddles. Other times, it's "I want daddy time", and he'll cuddle with Eric. He doesn't feel good, and at least mommy and daddy still have the power to help...
When Eric came home from work, he took Alex outside to play some basketball, and then took Tessa-Lynn for a wagon ride around the neighborhood.
The social worker at Doerenbecher is helping us get the "exception request" for the insurance completed. She made sure that Dr. Stork had a copy of the form taped to her telephone, so she couldn't miss it.
What we have found out about the insurance is that Eric's company (I'm not naming them on the Blog, and if you know who they are, please refrain from naming them in your comments) is self-insured, and just uses Humana as their 3rd party administrator. Hopefully, since Doerenbecher will be covered under the Anthem Blue Cross plan starting in January, his company will find it reasonable to cover our care for Alex at the in-network rate from November 11 - December 31st. Maybe I'm being naive, but I can only hope that they see that Alex's continuity of care is the most important thing with such an aggressive cancer.
I'm tired, Eric is tired...we are trying so hard to keep everything together for our kids, and dealing with Christmas, and now the insurance issue...it sure is a lot on our plate... My mom has been a huge help, and so have our friends and families...we're just so tired...
Tuesday, December 9, 2008
Monday, December 8, 2008
I Hate HUMANA Health Insurance
Well, we just got some disturbing news... HUMANA HEALTH INSURANCE is saying that Doerenbecher Hospital is OUT OF NETWORK, and therefore, they will pay even less in his insurance for his treatment there.
It doesn't matter that we called and got a "pre-certification" within the 72 hours as required by HUMANA. It doesn't matter that they told us that Doerenbecher was covered under the plan - that was just for the emergency visit. NO ONE told us we would need to move him to another Cancer Treatment Center after he was released. Continuity of care, especially for Cancer is important! We aren't just going to go to another cancer center, and risk Alex's health care and his life!
We were told there are other hospitals in the area that are covered under HUMANA's insurance - however, as they listed them off, NONE of them had the Pediatric Cancer unit like Doerenbecher.
We were told we can file an "exception" - but that would only be for claims going forward - the previous claims could be "appealed" IF the exception was granted...what do YOU think our chances are...hmmmm.....
I'm beside myself with frustration and anger.
We were also just told that the lifetime coverage cap does not start over in January, when Eric's company moves to Anthem Blue Cross Blue Shield (which, by the way, do cover Alex's doctors at Doerenbecher) - so, every dollar the insurance company does pay, is one less dollar Alex will be able to have available to him later - IT IS DISGUSTING!!!!!
I think that if I wasn't on Prozac and Xanax right now, I would be throwing things out the window...
We are continuing with Doerenbecher for Alex's care - and If I have to send $50 per month for the rest of my life to pay off what HUMANA won't pay, I'll do it - I'm also going to look at the state of Oregon, and see if Alex would qualify to be on that state plan (although I hear we would have to liquidate any assets (like our savings, retirement, etc).
Here we are, being responsible, and not racking up debt, and everything we have worked hard to save may be gone in a flash...Merry Christmas HUMANA - I hope you all can sleep at night - I know I won't be!
It doesn't matter that we called and got a "pre-certification" within the 72 hours as required by HUMANA. It doesn't matter that they told us that Doerenbecher was covered under the plan - that was just for the emergency visit. NO ONE told us we would need to move him to another Cancer Treatment Center after he was released. Continuity of care, especially for Cancer is important! We aren't just going to go to another cancer center, and risk Alex's health care and his life!
We were told there are other hospitals in the area that are covered under HUMANA's insurance - however, as they listed them off, NONE of them had the Pediatric Cancer unit like Doerenbecher.
We were told we can file an "exception" - but that would only be for claims going forward - the previous claims could be "appealed" IF the exception was granted...what do YOU think our chances are...hmmmm.....
I'm beside myself with frustration and anger.
We were also just told that the lifetime coverage cap does not start over in January, when Eric's company moves to Anthem Blue Cross Blue Shield (which, by the way, do cover Alex's doctors at Doerenbecher) - so, every dollar the insurance company does pay, is one less dollar Alex will be able to have available to him later - IT IS DISGUSTING!!!!!
I think that if I wasn't on Prozac and Xanax right now, I would be throwing things out the window...
We are continuing with Doerenbecher for Alex's care - and If I have to send $50 per month for the rest of my life to pay off what HUMANA won't pay, I'll do it - I'm also going to look at the state of Oregon, and see if Alex would qualify to be on that state plan (although I hear we would have to liquidate any assets (like our savings, retirement, etc).
Here we are, being responsible, and not racking up debt, and everything we have worked hard to save may be gone in a flash...Merry Christmas HUMANA - I hope you all can sleep at night - I know I won't be!
Thursday, December 4, 2008
Energy
Wow, this morning Alex literally "jumped" out of bed, and was in the best mood! His cheeks are getting so round, he just reminded me of a cartoon character .
He bounded up the stairs, got out the eggs, and told us that "I can't eat my eggs until I take my icky medicine". Eric mixed it up, and while we had to hold him down a bit, it got a lot easier. Our trick is this:
Grind Prednisone pill - mix with mango sherbet
Put on toddler spoon, and place in freezer until it is stiff
Get bucket (in case he throws up)
Get glass of water
Get Scooby Doo fruit snacks (essentially gummy bears)
Eric holds Alex's hands, feet, and head
I hold Alex's nose
Alex opens up
I shove in spoon
I remove spoon quickly
Give water immediately
Follow with fruit snacks
I can't wait to be done with the Prednisone!
Alex is watching Wall-E right now - snacking on some cheese sticks - after eating 3 eggs, 4 sausage links, and part of my egg white & cheese sandwich...and singing the Peter Gabriel song from the credits of the movie "We're going down to the ground...there's no better place to go - we've got snow on the mountains and rivers down below..."
Today is Alex's Chemo appointment, so I am enjoying his goofy, funny personality this morning, as this afternoon, he'll be lethargic and cranky, and nauseous. I'll take every moment, good or bad. He's amazing in his strength and acceptance of our new "normal". We have so much to learn from him!
He bounded up the stairs, got out the eggs, and told us that "I can't eat my eggs until I take my icky medicine". Eric mixed it up, and while we had to hold him down a bit, it got a lot easier. Our trick is this:
Grind Prednisone pill - mix with mango sherbet
Put on toddler spoon, and place in freezer until it is stiff
Get bucket (in case he throws up)
Get glass of water
Get Scooby Doo fruit snacks (essentially gummy bears)
Eric holds Alex's hands, feet, and head
I hold Alex's nose
Alex opens up
I shove in spoon
I remove spoon quickly
Give water immediately
Follow with fruit snacks
I can't wait to be done with the Prednisone!
Alex is watching Wall-E right now - snacking on some cheese sticks - after eating 3 eggs, 4 sausage links, and part of my egg white & cheese sandwich...and singing the Peter Gabriel song from the credits of the movie "We're going down to the ground...there's no better place to go - we've got snow on the mountains and rivers down below..."
Today is Alex's Chemo appointment, so I am enjoying his goofy, funny personality this morning, as this afternoon, he'll be lethargic and cranky, and nauseous. I'll take every moment, good or bad. He's amazing in his strength and acceptance of our new "normal". We have so much to learn from him!
Tuesday, December 2, 2008
Donation Account - Alex's Battle Fund
Our bank worked with us to set up a donation account to help cover the costs of Alex's medical care. While we have insurance, we still have to cover co-pay's, deductibles, and are up against a "lifetime cap".
The bank will not let us post information about the account online, so here are our two donation options:
1. Use PayPal to contribute to Alex's Battle Fund. The PayPal account is linked to the donation account, but since you can't see it, the bank is happy.
Instructions for using PayPal:
Click the "Donate" button on the left hand side of this page. A new window will appear with alex.battle.fund@gmail.com at the top. Enter the amount of your donation, and click the blue "update total" button. Your amount, along with the words "Alex's Battle Fund - Medical Expenses" will show at the top of the page. If you already have a PayPal account, just log in to complete the transaction. If you don't have a PayPal account, click on "Continue" at the bottom of the page under "Don't have a PayPal Account?". A page will come up allowing you to use your credit/debit card or bank account number to donate without having to set up a PayPal account.
If you aren't comfortable donating online, please use option #2.
2. Contact me directly at alex.battle.fund@gmail.com and I will be happy to give you the information to "walk in" a donation to the bank.
The bank will not let us post information about the account online, so here are our two donation options:
1. Use PayPal to contribute to Alex's Battle Fund. The PayPal account is linked to the donation account, but since you can't see it, the bank is happy
Instructions for using PayPal:
Click the "Donate" button on the left hand side of this page. A new window will appear with alex.battle.fund@gmail.com at the top. Enter the amount of your donation, and click the blue "update total" button. Your amount, along with the words "Alex's Battle Fund - Medical Expenses" will show at the top of the page. If you already have a PayPal account, just log in to complete the transaction. If you don't have a PayPal account, click on "Continue" at the bottom of the page under "Don't have a PayPal Account?". A page will come up allowing you to use your credit/debit card or bank account number to donate without having to set up a PayPal account.
If you aren't comfortable donating online, please use option #2.
2. Contact me directly at alex.battle.fund@gmail.com and I will be happy to give you the information to "walk in" a donation to the bank.
Amazing Appetite
I know that the steroids are supposed to increase appetite, but today was something else!
Alex ate 6 eggs (yes, I said six...), one hot dog, and a cheese stick for breakfast. He ate two eggs, then begged for two more, and then pleaded for two more. While I appreciate his increase in appetite due to the steroids, he won't be getting 6 eggs for breakfast again - we'll have a bit more variety next time...
We had his doctors appointment today, and his ANC (absolute neutrophil number) is down to 700 - once it gets to 500, we have to be "really" careful about germs. For perspective, his counts were 2100 just a week ago. It's scary that he'll be so vulnerable to infection, but it is what is necessary to get rid of this cancer.
Today, I talked to our Oncologist during his doctors appointment, and she said that Doerenbecher Children's Hospital sees only about 4 to 5 cases of Alex's cancer (Lymphoblastic Lymphoma) per year. It also occurs in boys more than 70% of the time...who knows why.
Alex still has his hair. Dr. Stork said that children with lighter hair tend to loose it later than children with dark hair...again, who knows why.
We have his next Chemo appointment on Thursday. Since he got so nauseous from the last dose, they are going to tweak the Zofran this time (anti-nausea medicine)
Alex ate 6 eggs (yes, I said six...), one hot dog, and a cheese stick for breakfast. He ate two eggs, then begged for two more, and then pleaded for two more. While I appreciate his increase in appetite due to the steroids, he won't be getting 6 eggs for breakfast again - we'll have a bit more variety next time...
We had his doctors appointment today, and his ANC (absolute neutrophil number) is down to 700 - once it gets to 500, we have to be "really" careful about germs. For perspective, his counts were 2100 just a week ago. It's scary that he'll be so vulnerable to infection, but it is what is necessary to get rid of this cancer.
Today, I talked to our Oncologist during his doctors appointment, and she said that Doerenbecher Children's Hospital sees only about 4 to 5 cases of Alex's cancer (Lymphoblastic Lymphoma) per year. It also occurs in boys more than 70% of the time...who knows why.
Alex still has his hair. Dr. Stork said that children with lighter hair tend to loose it later than children with dark hair...again, who knows why.
We have his next Chemo appointment on Thursday. Since he got so nauseous from the last dose, they are going to tweak the Zofran this time (anti-nausea medicine)
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