Thursday, December 8, 2011

Round 7

Tuesday, December 6, 2011

So we didn't quite get through round 6 without the dreaded fever, but at least it was a quick one. All 3 of the other kids were sick at home with runny noses and coughs, so I feared that when Drew's counts dropped that he may spike a fever and sure enough at 11pm on Saturday night (November 19, 2011) it hit. The 11 o' clock fever means that we pull an all nighter in the ER before ending up checked in upstairs at 4am. The fever only lasted 12 hours and only got as high as 102.5 and he was feeling pretty good through it all. After negative blood cultures and 24 hours fever free, we were able to head out after only a 48 hour stay!

We were able to enjoy a wonderful Thanksgiving and everyone was back in good health and Drew was feeling pretty good.

We were scheduled to start Round 7 (week 19 of 53) the Monday after Thanksgiving (November 28, 2011). The day started off with an early morning trip downtown for his next scheduled MRI (6 wks post radiation) and a CT to recheck his lungs from the pneumonia and a lumbar puncture for chemo in his spinal fluid. The MRI looked good and the CT showed improvement in his lungs. Once he was up from anesthesia, he received another dose of a different chemo IV. As if this wasn't enough for the day, he was also supposed to start an oral chemo that he would take for 5 days straight.

Drew has not taken any oral meds since his first round of chemo. It had been a complete nightmare trying to get meds in him because he would refuse to take them (because he already felt like junk) and then after an extraordinary amount of emotionally exhausting coaxing he would agree and then just vomit it up. If we tried to force them down he would also throw up. So nothing was getting down anyway and we were all spent. We have since been doing all of his meds IV which still isn't easy because his line has to be flushed with each medication and he can taste the flush, so he still hates having the meds and still throws up at times while doing them, but at least we know they are getting in him this way.

So when I saw that there was oral chemo listed in the protocol, I was a little (or a lot) concerned about how we were going to get these meds in him, so I started doing some research and planning for these next 2 rounds. I found out that the chemo does now come in an IV formulation which is fairly new and rather expensive. They wanted to make sure our insurance covered the IV form before they would even consider it, but we found out that it did. Then the next issue was that if he could take it orally we could be home all week, but if he couldn't then we would have to head back to the hospital everyday to get it IV. So we tried to see if he would take it. Again after a ton of coaxing (and I mean hours), he tried. It was a capsule that was opened and the powder mixed in apple juice. He tried really hard to get it down because he knew the next option was to place a nasogastric tube and tube it in. After a big sip to try and just get it done, he puked. Next up was the NG tube, which was just awful. I held him on my lap in a bear hug as 2 nurses worked to get this tube up his nose and down his throat. He was gagging and thrashing and kicking and biting and finally projectile vomiting all over them. They finally gave up, but this still meant he had been through all this and still hadn't had his dose for the day. They had the pharmacy order and overnight the IV form and we went home to return for the next 5 days for it IV.

Tuesday he woke up with severe abdominal pain and complaining of a headache, but it seemed to subside as the day went on. We didn't have to go back to the hospital until later in the afternoon, so Brooke was able to come with for the trip. Having her along really kept his spirits up even though he was feeling pretty down.

Our appointment for Wednesday was a little bit earlier in the day, so we got up and ready and Drew and I headed out. About 20 minutes into our trip downtown in traffic on 290, he started puking. We got off as soon as I could and got cleaned up. Before we even made it back to the highway, he was puking again. This was the first time that this had happened where we were alone in the car with me driving and him puking.

He had done so well with the last 2 rounds with minimal puking and we had never done this back and forth outpatient stuff, so I was completely caught off guard and felt so unprepared. Had I had any idea that he would be so sick, I would have never gone alone. It was awful. He couldn't get comfortable strapped in his seat and was just moaning and cringing as if in pain and complaining that his head and tummy hurt. He threw up a total of 4 times on our ride and finally we just had to keep going, so that we could get there and get him feeling better.

We got to the hospital and he was able to lay down and they gave him some extra fluids and he was doing better, so after his chemo we came home. I had already called Randy on the way down to have him take the next 2 days off b/c there was no way we could make this trip alone again.

Thursday's trip was even worse, but at least this time we had help. Drew threw up the whole ride basically nonstop. It started before we even left the driveway and didn't stop until we were at the hospital and he was now throwing up blood. We ended up staying for the next 3 days to finish this round, so what was supposed to be and "easier" round with some oral chemo at home, turned into an inpatient stay (our 13th inpatient stay in 5 1/2 months to be exact) . He did do better just being at the hospital though without the back and forth. We came home Saturday (December 3, 2011) and now get back to work at getting strong again. Today his appetite was a little better and he was more active than he has been lately. We are already on week 20 of 53 and he actually gets a whole extra week off this round and next, so instead of starting after 3 weeks, he will start again after 4 which will be the day after Christmas.

The chemo that he received this round isn't supposed to be quite as hard on his counts. This weekend Drew (and all his siblings) are invited to go on a special Polar Express train ride and then a trip to the North Pole to meet Santa at his workshop! So again we are praying that his white count won't completely bottom out and that he won't get a fever or any other complications. Hopefully, all will be well and we can enjoy this special time of year as we remember the birth of our Savior and all that He has suffered and done for us and how He guides and comforts us each and every day.

Thanksgiving Day! It's a rare event these days that we actually all get to go somewhere together, so here's a shot of all the kids in the car at once.

The day after Thanksgiving was a pretty nice warm day. Drew had been wanting to go see the tanks at Cantigny, so we packed some snacks and loaded everyone up in the car. Before we left the driveway though, my mom called and said that she had just passed Cantigny and it was closed! Big, sad tears fell and Drew was very upset. Luckily, Randy remembered that there was a VFW a couple towns over that had a big tank outside of it, so we went there instead and it did the trick - they loved it!

We had fun putting up the Christmas tree.
All 4 kids in the picture and looking at the camera! And yes that is a candy cane that Drew is turning into a "shoot gun".

Last of the eyelashes.
We have talked in the past about his eyelashes and eyebrows and as they started to thin, we would count how many were left. They had been thinning, but weren't really almost gone until after round 5. He had been hanging on to 2 eyelashes on each eye for awhile and the other day one of the two on his right eye fell out and was on his cheek. I showed him and he told me to, "count them now mom," and then told me to take a picture. If you look close you can see the remaining one on his right eye and the two on his left.

And little Kelsey, just 5 1/2 months old, has started to crawl!

Wednesday, November 30, 2011

Christmas Wish List

Hello Everyone! This is Debbie, Drew's Aunt. I have been asked by a few different people for a Christmas "Wish List" for the Ames family. I have asked Dayna to put together a list of things that would make the kids Christmas great this year! Please to do not feel that you have to buy anything but I did want to provide a list for those that have asked. Thank you to all for your generosity, support and prayers!

*I have included a list of specific items and also a list interests for each of the children.

*If you are interested in purchasing one of the specific items listed please email me at and let me know so I can remove that item from the list! Thanks!


Specific Items:

3-in-1 Inflatable Sports Game
FOUND AT: Learning Express for $29.99
FOR: Drew & Dallin

Team Sport Checkers Set
FOUND AT: Learning Express for $19.99
FOR: Drew

Marshmallow Camo Shooter
FOUND AT: Learning Express for $19.99
FOUND AT: Bed, Bath & Beyond for $14.99
FOR: Brooke, Drew & Dallin

Spooner Board
FOUND AT: Learning Express for $39.99-$49.99
FOR: Brooke & Drew

Bears Connect 4
FOUND AT: Jewel for $25.99
FOR: Drew

8-in-1 Sports Pack for the Wii Sports Resort (2)
FOUND AT: Bed, Bath & Beyond for $14.99
FOR: The Ames Family

Playhut 3-in-1 Sports Arcade
FOUND AT: Walmart for $19.99
FOR: Dallin

Ideal SuperShot Air Hockey Game
FOUND AT: Walmart for $21
FOR: Drew


Brooke Likes:
Arts & Crafts things
American Girl
Animals - dolphin, whale, cat, dog

Drew Likes:
Star Wars
Army Guys

Dallin Likes:
Bubble Guppies (from Nick Jr.)
Curious George

Kelsey Likes:
Formula - Enfamil Infant
Diapers - Pampers size 3
Baby Food - Happy Baby Cereal and squeezable pouches
Robbeez Soft Soles Classic Booties - brown, pink, cream, or off white - size 6-12mo. or 12-18mo.

The family is also still in need of gas cards, Jewel gift cards, McDonald's gift cards, etc. If you would like to make a donation to help with Drew's medical care don't forget that you can do that right here on this website!


Wednesday, November 23, 2011

Round 6

Tuesday, November 22, 2011

We started round 6 of chemo on time on Wednesday, November 9th. This round consisted of 3 days of inpatient chemo and then we were able to do the last 2 days at home. So Sunday, November 13th started with some chemo in the morning and then we finished it off with a Bears game in the afternoon! Thanks to my cousin Scott and Harris Bank, we were given quite the VIP experience.

They had some gifts for us and wouldn’t you know, the foam bear claw was the biggest hit!

Bear down!

It was a beautiful 70 degree mid November afternoon. It was a great day for a football game and Drew had an awesome time - until he puked in the 3rd and we called it a night.

We then spent the next couple of days playing “Bears Game”.

This particular day, he recruited Brooke to play too. They put their jerseys on and Drew came to me and said, “ok mom, now chase me and tackle me!”

I don’t know if you can see the football under his arm in this picture, but he insisted on posing like this and acting all fierce and intense.

Drew still has weakness in his right leg and some of the chemo affects his feet making it hard to lift his toes at times. Now this doesn’t really limit his getting around at all and he climbs and plays like normal, but we talk a lot about how when he gets better and stronger, he will be able to run again. Well he asked me to go find his little football and when I brought it to him he said, “mom, I want to run.” Then with such confidence he backed up down the hall and took off with the best stride we have seen since this all started!

Kelsey is 5 months old now and is rolling all over.

Drew & Dallin

Boys - somehow everything always turns into a "shoot" game. Good thing Dallin is such a good little actor, he keeps the game interesting each time he's "hit".

November 23, 2011

Tomorrow is Thanksgiving and we are so grateful to all be home together as a family for the holiday. We also wanted to take the opportunity to thank each and every one of you for all that you have done for us. Whether it has been bringing us a meal, shopping, helping with the kids, sending a card or picture, words of encouragement, prayers, volunteering and fundraising or other selfless acts of giving, we can't express enough our thankfulness. We are very humbled to know how many people care and love and support us. Please know that all of your efforts have been received and have helped to sustain us through this. We count our blessings every day as they are numerous and wish everyone a Happy Thanksgiving!

Tuesday, November 8, 2011

Monday, November 7, 2011

Well we have officially made it through Round 5 without a fever! This is the first time we haven't had a readmit for a fever following a round of chemo, since the beginning.

Drew's protocol consists of 53 weeks of chemo and radiation. Every 3 weeks (21 days) he is inpatient for a round of chemo. For the first 13 weeks he also received chemo at home on the off weeks. Almost every round so far has consisted of a different combination of chemo meds. He usually starts puking on day 2 and just when it would start to let up he would get that next dose at home and would start puking again for another day or two. Then every time his counts would drop he would start puking again. For those of you familiar with the movie "Stand by Me", it has been a total barf-o-rama at our house.

Well, round 4 finished up 2 of the nastiest make you puke meds, so we couldn't believe it when during round 5 he only vomited 2 times total at the hospital! Then he didn't have to get the 2 extra doses of chemo at home on the off weeks either. We did have a couple of days when we knew his counts were bottoming out and he started throwing up a lot for 2 days straight. We held our breath as I thought for sure a fever was coming on, but he pulled through it and bounced right back and his counts started to recover and no fever admit!

We still made several trips downtown for blood and platelets, but it has been so nice to be home for 2 weeks. Drew has regained so much strength and he and Brooke have had so much fun playing together again. We were even able to start some physical therapy this last week too.

He will start Round 6 on Wednesday. This is our second time actually starting on time with no delay due to his counts being too low. It goes so fast when each round starts every 21 days and then 5 of those days consist of chemo, so it really feels like it's every 2 weeks.

Pictures from the last few weeks...
Halloween - the kids with Grandma & Papa
Brooke - Ariel (The Little Mermaid), Drew - Boba Fett (Star Wars), Dallin - Dinosaur, Kelsey - Kitty

We had to go get a platelet transfusion on Halloween, but we got there early enough that we were able to make it out in time to get home for trick or treating. Here's Drew with his scary monster teeth that they gave him at the hospital.

Just cute Kelsey

We had a beautiful warm fall evening the other day and my Uncle Scott called and said that he and my cousin Matt were thinking about going fishing and wanted to know if the kids were interested. The unanimous reply was, "YES!" We even caught a few big ones!

Typical day lounging around the house watching TV.

We had to go get blood the other day and no matter how hard we try, we always seem to get out of there just in time for traffic, so it has been taking us 2 hours to get home lately. Luckily Drew usually catches a nap, so I try to enjoy the quiet while I can, even if it is in nasty, bumper to bumper late Friday afternoon traffic.

Drew has been doing so good at the hospital with everything lately. He has made friends with the doctors and nurses and allows them to do what they need to do without putting up a fight at all most of the time. I’m sure not feeling so sick is a big part of it, but he has been just going about his business playing and having fun.

It has been so nice to be able to spend some time outside and enjoy the beautiful fall weather.

Thursday, October 27, 2011

Holiday Shopping Event to Benefit Drew

Please join us for our 6th Annual Home Show and get a jump start on your holiday shopping.
This year, everyone will donate a portion of their sales to help Drew and the Ames family.
Funds raised will help the Ames family with Drew's medical expenses.

Saturday, November 12, 2011 10A—3P
Mindy Bergeron’s
1N275 Blue Jay Court, Carol Stream

Shop from
Avon, Carm’s Creations
(Custom Kids Clothing)
Covered in Chocolate
Guy and Eva Jewelry
Tastefully Simple
and Thirty One Gifts!
We will also have baked goods for sale and a raffle!!!

Wednesday, October 19, 2011

Radiation Complete

Tuesday, October 18, 2011

Radiation done. Next up - Round 5 of Chemo.

Me & my superman

Sunday, October 16, 2011

Our Fundraiser was a HUGE Success!

We held our Spaghetti Dinner fundraiser with LIVE auction on Friday night, October 14th.
It was a huge success thanks to so many people!

We wish to thank the Wheaton Bowl and Pal Joey's who did the catering.
Thanks to our auctioneer Jennifer with Auction by Jennifer and for the wonderful music by the band.

It was a great evening of fun and food and entertainment.
Drew was able to make a brief appearance and have some dinner with his family.
We had 85 awesome auction items and over 100 raffle items.
We sold Team Drew t-shirts and buttons and had a split the pot.

Our family, friends, community, local businesses and church members rallied around us and embraced us in this effort.

We want to thank the many volunteers and all that donated their time and services for this wonderful cause.

Our grand total is
All for the love of a special little boy.