Today was a really good day.
Alex got to play with two of his good friends at Chandler's house. Connor mentioned that Alex's hair was cut real short, and after a few minutes of just getting comfortable with each other again, all three were having a blast. It was so nice to see Alex just be a 3 1/2 year old boy, playing hard, and just enjoying being a regular kid.
He told me today, "Mommy, it's after Christmas, so now can I go back to school?" I really hope so - we're just waiting for the all clear from the school that everyone has turned in their immunization records in his class.
This Friday, when we have our doctor's appointment, the social worker should be getting us the information to give to the school, on how to explain cancer to preschoolers. I can't wait to get him back to school!
Alex asks each day "So, Mommy, what do we have to take today?" - He knows all his medicine - amazing...
We had only two trips to the nice rug today - a marked improvement over previous days.
Alex is staying up with us until midnight to ring in the new year - he is remarkably alert, and in a great mood! (Tessa-Lynn made it to 9:30 before falling deep asleep).
When we ring in the new year, we will be marking only 98 more weeks until Alex's cancer treatment is done. That is 98 more Saturdays - less than 100 - we can handle that! After that 98 Saturdays, we'll need to count down another 156 Saturdays before Alex is considered "cured". So, in a total of 254 Saturdays we can breath easier...
Happy New Year Everyone!
Wednesday, December 31, 2008
Saturday, December 27, 2008
Christmas and new Chemo
The nice part about Alex flunking his counts last week is that he was free of just about all his medications for Christmas. We didn't have to fight him to swallow this, or take that - it was a nice reprieve.
Christmas was wonderful - Alex got us up about 6:45am all excited that Santa had indeed arrived! We opened presents for *hours* (I'm not kidding - *hours*), and enjoyed the company of Alex's Grandparents, Jim, Diana and Bob. Alex was so excited to give his gift to Tessa-Lynn, which just made my heart swell.
We broke out the "nice rug" on Christmas - a trick from one of my friends, Joelle. If Alex isn't acting "nice", he has to go sit on the rug until he can be "nice". I think it is working...he sure doesn't like having to sit on it!
We had Alex's big Chemo appointment on Friday - we were at the hospital for 10 1/2 hours - yes ten and a half hours...ugh! He had an LP (lumbar puncture) to inject more Methotrexate into his spinal fluid at 10:30. We left the house at 8:30 to pick up the numbing cream at the pharmacy, so we could apply it to his PORT before we got to the hospital. Wouldn't you know it, a 15 gram tube costs $35 and is not covered under our insurance - we'll see what happens come 1/1/2009.
We got to the hospital, and they checked his counts. He squeaked by with an ANC of 800 (he needed 750 in order to start the new Chemo)! The nurses hooked him up to an IV to start fluid through his PORT since one of the Chemo drugs (Cytoxan), is really hard on the bladder. We went to the playroom, and hung out until they were ready for us in the procedure room. Alex was a champ, and went "under" for the anesthesiologist without incident. The LP took only 15 minutes, and then silly, goofy, still-sort-of-drugged Alex wobbled to our room. The nurse hooked him back up to the IV, and we waited for him to pee. Yup, the kid who can pee any time, anywhere wouldn't go. He napped, I napped, Eric napped, and we waited, and waited. Hours went by, and he still wouldn't pee. There was a TV in the room, so we endured the kids show Barney (ughhhhhh), and other cartoons while we waited.
Finally, I got him to pee. Unfortunately, it was just about a 1/4 cup of fluid, and waaaayyyy to concentrated. So, we waited some more. Another bag of fluid was put on his IV pole, and finally, he went some more. Again, not much, and too concentrated. So, nurse Mindy gave him a diuretic to make him go. SUCCESS!
First, we had to give him Zofran (anti-nausea), and wait 1/2 hour. Then, the Cytoxan took over 1/2 hour to dispense through his PORT. During that time, we also were educated on giving him his Cyterabine Chemo at home, and "deactivating" his PORT. Then, we had 3 more hours of hydration before he could go home.
Alex was a real champ, and started smiling for the nurses. Thank goodness, we don't have to do the Cytoxan again for another 28 days!
This morning, we went out to breakfast at our normal restaurant, and Alex threw up as we were getting ready to pay the bill, poor guy! All the waitresses there are so nice, and really are concerned about Alex. They gave us a bucket we could take with us, in case he got sick again. We are now thinking we need to give him the Zofran more often...we are learning as fast as we can! There haven't been anymore throw-up sessions today, hopefully we will be able to time the Zofran to eliminate his nausea...
Christmas was wonderful - Alex got us up about 6:45am all excited that Santa had indeed arrived! We opened presents for *hours* (I'm not kidding - *hours*), and enjoyed the company of Alex's Grandparents, Jim, Diana and Bob. Alex was so excited to give his gift to Tessa-Lynn, which just made my heart swell.
We broke out the "nice rug" on Christmas - a trick from one of my friends, Joelle. If Alex isn't acting "nice", he has to go sit on the rug until he can be "nice". I think it is working...he sure doesn't like having to sit on it!
We had Alex's big Chemo appointment on Friday - we were at the hospital for 10 1/2 hours - yes ten and a half hours...ugh! He had an LP (lumbar puncture) to inject more Methotrexate into his spinal fluid at 10:30. We left the house at 8:30 to pick up the numbing cream at the pharmacy, so we could apply it to his PORT before we got to the hospital. Wouldn't you know it, a 15 gram tube costs $35 and is not covered under our insurance - we'll see what happens come 1/1/2009.
We got to the hospital, and they checked his counts. He squeaked by with an ANC of 800 (he needed 750 in order to start the new Chemo)! The nurses hooked him up to an IV to start fluid through his PORT since one of the Chemo drugs (Cytoxan), is really hard on the bladder. We went to the playroom, and hung out until they were ready for us in the procedure room. Alex was a champ, and went "under" for the anesthesiologist without incident. The LP took only 15 minutes, and then silly, goofy, still-sort-of-drugged Alex wobbled to our room. The nurse hooked him back up to the IV, and we waited for him to pee. Yup, the kid who can pee any time, anywhere wouldn't go. He napped, I napped, Eric napped, and we waited, and waited. Hours went by, and he still wouldn't pee. There was a TV in the room, so we endured the kids show Barney (ughhhhhh), and other cartoons while we waited.
Finally, I got him to pee. Unfortunately, it was just about a 1/4 cup of fluid, and waaaayyyy to concentrated. So, we waited some more. Another bag of fluid was put on his IV pole, and finally, he went some more. Again, not much, and too concentrated. So, nurse Mindy gave him a diuretic to make him go. SUCCESS!
First, we had to give him Zofran (anti-nausea), and wait 1/2 hour. Then, the Cytoxan took over 1/2 hour to dispense through his PORT. During that time, we also were educated on giving him his Cyterabine Chemo at home, and "deactivating" his PORT. Then, we had 3 more hours of hydration before he could go home.
Alex was a real champ, and started smiling for the nurses. Thank goodness, we don't have to do the Cytoxan again for another 28 days!
This morning, we went out to breakfast at our normal restaurant, and Alex threw up as we were getting ready to pay the bill, poor guy! All the waitresses there are so nice, and really are concerned about Alex. They gave us a bucket we could take with us, in case he got sick again. We are now thinking we need to give him the Zofran more often...we are learning as fast as we can! There haven't been anymore throw-up sessions today, hopefully we will be able to time the Zofran to eliminate his nausea...
Operation Cue Ball - another one!
Well, Grandpa Bob went down to the barber shop today, and told them to buzz off his hair for Alex!
Looking great Grandpa Bob!
Wednesday, December 24, 2008
Frustration
We have been dealing with a lot of discipline issues with Alex lately. I know it's because he is bored, not in a routine, and for this week, he doesn't even have a regular doctors appointment until Friday...
The other day, he told me "I can't get a time out - because I have a PORT". We told him that even though he has a PORT, he needs to listen, not wrestle with his sister, not throw pillows, not slam doors (take your pick...)
This is the hard part - we want him to grow up and be a responsible, empathetic, courteous, and strong man, yet he is angry and frustrated, and so much of this comes from a situation that none of us have control over.
I hope that when January comes, as long as all of Alex's classmates have had all their immunizations, he will be able to go back to school - and we can get some normalcy back into his routine, and give him some structure.
Well, Alex and I are going to go play in the snow - Grandpa Jim, Eric and Tessa-Lynn are out doing some last minute shopping - so we have some Mommy/Son time.
The other day, he told me "I can't get a time out - because I have a PORT". We told him that even though he has a PORT, he needs to listen, not wrestle with his sister, not throw pillows, not slam doors (take your pick...)
This is the hard part - we want him to grow up and be a responsible, empathetic, courteous, and strong man, yet he is angry and frustrated, and so much of this comes from a situation that none of us have control over.
I hope that when January comes, as long as all of Alex's classmates have had all their immunizations, he will be able to go back to school - and we can get some normalcy back into his routine, and give him some structure.
Well, Alex and I are going to go play in the snow - Grandpa Jim, Eric and Tessa-Lynn are out doing some last minute shopping - so we have some Mommy/Son time.
Operation Cue Ball - more pictures
Grandpa Jim came up to visit for Christmas. He decided to join in "Operation Cue Ball", and shave his head. Alex joined in, and helped me add another bald head to the family!
Looking Good Grandpa Jim!
Tuesday, December 23, 2008
Playing Hospital
Last night, Alex and I were playing downstairs in his room before bedtime. We got out his doctor kit, and "Steve", the bear he got in the hospital who has a PICC line. Alex was putting on his gloves, and getting an alcohol wipe to clean the bear's PICC line, and I asked him "doctor, are you ready for the medicine?" - he looked at me, took the empty syringe, and said "doctor mommy, this is not medicine, it's the Heprin Flush" - I smiled, and then felt sad. My 3 1/2 year old understands more about medicine, and medical procedures than he should. While I am amazed at his retention and understanding of what is happening, the fact that he is exposed to this information just breaks my heart.
We played for about 45 minutes, putting in medicine, taking on and off bandages, and inserting a PORT. He talked a lot about the procedures "Steve, now this going to be a poke - but it isn't going to hurt", "Steve, this is icky medicine, but you have to take it", "Steve, this is the Heprin Flush, it isn't medicine, and it isn't going to hurt". This is how he is processing all of this - and I'm proud of him.
Just when I am amazed at his maturity, he tells me this:
"Mommy, this is the Heprin Flush, it goes in his PICC line, goes inside, and turns into icky medicine, goes into his nose, then shoots out, and turns into boogers" - I just cracked up - he's a 3 1/2 year old boy - and that's a 3 1/2 year old boy's imagination at work!
We played for about 45 minutes, putting in medicine, taking on and off bandages, and inserting a PORT. He talked a lot about the procedures "Steve, now this going to be a poke - but it isn't going to hurt", "Steve, this is icky medicine, but you have to take it", "Steve, this is the Heprin Flush, it isn't medicine, and it isn't going to hurt". This is how he is processing all of this - and I'm proud of him.
Just when I am amazed at his maturity, he tells me this:
"Mommy, this is the Heprin Flush, it goes in his PICC line, goes inside, and turns into icky medicine, goes into his nose, then shoots out, and turns into boogers" - I just cracked up - he's a 3 1/2 year old boy - and that's a 3 1/2 year old boy's imagination at work!
Thursday, December 18, 2008
Waiting...
Today was supposed to be Alex's first day of Consolidation - the next phase in his treatment. Eric took the day off of work, so that we could both be there to learn about the new medication cycles, and also to learn how to access Alex's Port for treatment at home.
We got to the hospital on time, and checked in. We put some of the numbing cream on his skin above the Port, and waited about 30 minutes for the cream to work. The nurse was able to access the Port no problem (Alex was sitting on Eric's lap - he is so stoic with these things!).
Unfortunately, when they ran his blood numbers, his ANC number was too low (only 500), so that put his Chemo on hold for a week. So...we need to be extra vigilant about hand washing, and keeping Alex healthy. If he gets a fever with his counts this low, they admit him to the hospital - and none of us want that before Christmas - or anytime!
We are going to try to start his Consolidation cycle next week. The good news, is that Alex should be feeling really good for Christmas - he isn't on any medication this week.
We got to the hospital on time, and checked in. We put some of the numbing cream on his skin above the Port, and waited about 30 minutes for the cream to work. The nurse was able to access the Port no problem (Alex was sitting on Eric's lap - he is so stoic with these things!).
Unfortunately, when they ran his blood numbers, his ANC number was too low (only 500), so that put his Chemo on hold for a week. So...we need to be extra vigilant about hand washing, and keeping Alex healthy. If he gets a fever with his counts this low, they admit him to the hospital - and none of us want that before Christmas - or anytime!
We are going to try to start his Consolidation cycle next week. The good news, is that Alex should be feeling really good for Christmas - he isn't on any medication this week.
Wednesday, December 17, 2008
Operation Cue Ball - pictures
Gampa Pat
Grandpa John
Two of Alex's Grandpa's joined in Operation Cue Ball, and shaved their heads in support of Alex.
Way to go!
A very long day...
Yesterday was Alex's Port Placement procedure.
We had to be at the hospital at 6:30am for check-in. So, we dropped Tessa-Lynn off at my Mom's house the night before, and dragged ourselves and Alex out to the car at 5:45am. It was in the 20's, and snowing - wonderful...(ugh)
We made it up the hill, and got checked in right away, and then waited about 45 minutes to be called into our room. Once in our room, the doctors decided they didn't need to do another chest X-ray, since we had done one last Thursday. The doctors showed us the newest X-ray, and the mass is gone! Amazing!
The doctors gave Alex some "calming" medicine in his PICC line, and he started to get goofy. They then wheeled him down the hall, and we waited. We ran down to the cafeteria to eat some breakfast, and then came back to the room. About 45 mins later, the doctor told us everything went well, and that Alex was in the recovery room. The Port placement went perfect, and they had taken out his PICC line.
When they finally wheeled him into our room, they told us that they gave him 4 doses of Morphine to calm him down after waking up from the anesthesia (he doesn't seem to like it very much). So, he slept for a few hours.
About 1:30pm we finally made it home. Mom dropped Tessa back off with us. Alex asked us to call Grandma on the way home and make sure she was bringing his baby home.
Alex didn't want to eat, and just sat down to watch some Scooby Doo. About 3pm he said he didn't feel well, and I asked if he needed a bucket to spit up in. He said "no, not like that". I just thought it was the anesthesia, and gave him a blanket, on the couch, and he fell asleep. I woke him up at 5:30. A few minutes later, he asked me to take his temperature. As it soared above 100, I called Eric up from downstairs, and called the doctors office. It finally stopped climbing at 102.4. The doctor told us to come in to the Emergency Department at Doerenbecher to get checked out. So, we packed up everything from the night before, dropped Tessa-Lynn back off with my Mother, and headed back up the hill.
We were seen almost immediately, and they told us they wanted to run some blood cultures. Well, guess what? His PICC line was gone, and his Port had only been put in 11 hours earlier - ugh! So, they lathered up the Port area with Embrel cream (a numbing cream), and waited about 45 mins. Then, they had the most experienced IV tech access the Port - No problem (whew!).
The doctor was the same one who broke the news to us that it was cancer back in November. He said he had been following Alex's case - he seemed really taken by him. He had Alex's blood checked for bacterial infection, and gave him a broad-spectrum antibiotic through his Port. They also gave him some Tylenol for the fever. Eric went to the cafeteria, and got some food for us, since we hadn't eaten dinner yet before we left.
Alex started perking up, and at about 10:15pm, we were able to go home. According to the Emergency Room Doctor, this is going to happen a lot...ugh...
No fever today - just a bit of a runny nose. We went sledding for a few minutes outside, but have spent most of the morning inside.
We had to be at the hospital at 6:30am for check-in. So, we dropped Tessa-Lynn off at my Mom's house the night before, and dragged ourselves and Alex out to the car at 5:45am. It was in the 20's, and snowing - wonderful...(ugh)
We made it up the hill, and got checked in right away, and then waited about 45 minutes to be called into our room. Once in our room, the doctors decided they didn't need to do another chest X-ray, since we had done one last Thursday. The doctors showed us the newest X-ray, and the mass is gone! Amazing!
The doctors gave Alex some "calming" medicine in his PICC line, and he started to get goofy. They then wheeled him down the hall, and we waited. We ran down to the cafeteria to eat some breakfast, and then came back to the room. About 45 mins later, the doctor told us everything went well, and that Alex was in the recovery room. The Port placement went perfect, and they had taken out his PICC line.
When they finally wheeled him into our room, they told us that they gave him 4 doses of Morphine to calm him down after waking up from the anesthesia (he doesn't seem to like it very much). So, he slept for a few hours.
About 1:30pm we finally made it home. Mom dropped Tessa back off with us. Alex asked us to call Grandma on the way home and make sure she was bringing his baby home.
Alex didn't want to eat, and just sat down to watch some Scooby Doo. About 3pm he said he didn't feel well, and I asked if he needed a bucket to spit up in. He said "no, not like that". I just thought it was the anesthesia, and gave him a blanket, on the couch, and he fell asleep. I woke him up at 5:30. A few minutes later, he asked me to take his temperature. As it soared above 100, I called Eric up from downstairs, and called the doctors office. It finally stopped climbing at 102.4. The doctor told us to come in to the Emergency Department at Doerenbecher to get checked out. So, we packed up everything from the night before, dropped Tessa-Lynn back off with my Mother, and headed back up the hill.
We were seen almost immediately, and they told us they wanted to run some blood cultures. Well, guess what? His PICC line was gone, and his Port had only been put in 11 hours earlier - ugh! So, they lathered up the Port area with Embrel cream (a numbing cream), and waited about 45 mins. Then, they had the most experienced IV tech access the Port - No problem (whew!).
The doctor was the same one who broke the news to us that it was cancer back in November. He said he had been following Alex's case - he seemed really taken by him. He had Alex's blood checked for bacterial infection, and gave him a broad-spectrum antibiotic through his Port. They also gave him some Tylenol for the fever. Eric went to the cafeteria, and got some food for us, since we hadn't eaten dinner yet before we left.
Alex started perking up, and at about 10:15pm, we were able to go home. According to the Emergency Room Doctor, this is going to happen a lot...ugh...
No fever today - just a bit of a runny nose. We went sledding for a few minutes outside, but have spent most of the morning inside.
Sunday, December 14, 2008
A Wonderful Day
Snow...
What is it about that first snow of the year that just brings out the child in each of us?
This morning, it snowed - and it is still snowing this afternoon. Alex's fever had broken at 99.6 yesterday, so we didn't need to take him into the hospital. This morning his temperature was fine, so we all went out to play in the snow.
We didn't really have any "snow gear" for him yet, so we squeezed him into last season's snow stuff, put on a hat, and my gloves (couldn't find any his size), and out we went. He pulled his sister in the little sled, and slid down our neighbors driveway on his sled. We made snowballs, and threw them at each other, and our neighbors - Alex laughed, giggled, yelped, squealed, and had a great time - and so did we.
After lunch, Alex and Eric went back out for some more sledding and snowball fight action. It makes my heart swell watching the two of them just be "father and son" - no oweies, no medicine, just two guys trying to get each other with as many snowballs as they can!
Tessa-Lynn and I are watching from the warmth of inside this time - it's cold out there!
This weekend, all we have had to do for medicine is the Septra - the grape icky stuff - and his heprin flush of his PICC line. It's been nice not having nearly as much medicine to keep track of for one weekend.
It's fitting that the fresh snow, which blankets everything, and makes our world quiet is falling on the weekend when Alex enters the next phase of his treatment. All is "normal" today - Alex and Tessa-Lynn are giggling, and Eric and I are enjoying "playing" with our children. I'm savoring the moment...
What is it about that first snow of the year that just brings out the child in each of us?
This morning, it snowed - and it is still snowing this afternoon. Alex's fever had broken at 99.6 yesterday, so we didn't need to take him into the hospital. This morning his temperature was fine, so we all went out to play in the snow.
We didn't really have any "snow gear" for him yet, so we squeezed him into last season's snow stuff, put on a hat, and my gloves (couldn't find any his size), and out we went. He pulled his sister in the little sled, and slid down our neighbors driveway on his sled. We made snowballs, and threw them at each other, and our neighbors - Alex laughed, giggled, yelped, squealed, and had a great time - and so did we.
After lunch, Alex and Eric went back out for some more sledding and snowball fight action. It makes my heart swell watching the two of them just be "father and son" - no oweies, no medicine, just two guys trying to get each other with as many snowballs as they can!
Tessa-Lynn and I are watching from the warmth of inside this time - it's cold out there!
This weekend, all we have had to do for medicine is the Septra - the grape icky stuff - and his heprin flush of his PICC line. It's been nice not having nearly as much medicine to keep track of for one weekend.
It's fitting that the fresh snow, which blankets everything, and makes our world quiet is falling on the weekend when Alex enters the next phase of his treatment. All is "normal" today - Alex and Tessa-Lynn are giggling, and Eric and I are enjoying "playing" with our children. I'm savoring the moment...
Friday, December 12, 2008
Operation Cue-Ball
Well, it finally happened...last night I noticed hair in my hand as I ran my hand through Alex's hair...So, we did it - Alex and Eric shaved their heads last night. And true to my word, I shaved my legs (smile)...If anyone else wants to shave their heads in solidarity with Alex, I would love to see a picture!
Wow, it really hit me when I was shaving Alex's head - he has Cancer - I've known it, but even as he swelled up from the Prednisone steroids, I was able to sort of deny what was happening. But now, I am reminded every time I see him that he is in a battle for his life - and I feel helpless.
In this picture, you can see his PICC line, which will be removed next week. We spent the entire day at the hospital yesterday, preparing for next week. Wouldn't you know it, that yesterday, Doerenbecher was giving away free cupcakes and cookies on *every* floor. So, keeping poor Alex away from food from 11 am to 2:30 pm was quite a challenge!
We took a Tram ride up and down the hill, and then went ornament shopping at the gift shop while we waited in-between appointments.
Alex got an X-ray yesterday, and it should be confirming what the doctors suspect - that he is in remission - we will get the final word on that next week. Again, remission just means that they cannot detect the tumor anymore. The next 23 months will be about hitting any remaining cancer cells as hard as possible to completely eliminate the cancer.
Yesterday was the official end of phase one "Induction" - the best news - NO MORE PREDNISONE! He took his last dose in some chocolate ice cream after his lumbar puncture yesterday afternoon. I'm so proud of him! The next phase is 8 weeks, and is called "Consolidation".
Alex' counts were up at 5500 - and this morning, he got a runny nose (which explains his high ANC numbers). So, we are keeping a close eye on him and his temperature.
Next week, we'll get more information on the new round of Chemo drugs, and his new appointment schedule.
Stay tuned!
Thursday, December 11, 2008
Yes Alex's Family, there is a Santa Claus
I got a great telephone call this morning.
Humana has accepted our "exception request" for Doerenbecher Hospital from Dec 9 - 31st. They also are accepting Alex's initial stay at the hospital from 11/11 - 11/17. So, now all we need to do is file an "appeal" for the period of 11/18 - 12/8. That appeal will be filed today! Starting 1/1/2009, Anthem Blue Cross will be covering Doerenbecher - so, at least this "battle" will be over, and we can continue to focus on Alex's care.
Today, we have two appointments - the first is his "pre-op" appointment for his Port that he is getting on Tuesday - the second appointment is for his spinal tap to give him the Methotrexate. He is on a break from the Donorubicin and Vincristine this week. But since he is getting the spinal tap, he can't have anything to eat after 9:30 this morning - and the spinal tap isn't until 3:30 this afternoon - yikes! - Also, he has to take his Prednisone on an empty stomach...and we mix it in frozen mango sherbet --- haven't quite figured out the logistics on this one yet...
In order to "prepare" for not being able to eat later, Alex has had 4 eggs, 2 pieces of toast, 2 sausages, some of my egg/cheese/sausage sandwich, and now a quesadilla...
My mom is going to watch Tessa today, while I try and keep Alex away from all food for 7 hours! Wish me luck...
Tuesday, December 9, 2008
Mommy & Daddy Time
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...
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...
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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