Monday, August 29, 2011

Fundraiser Tickets

Make sure to purchase your tickets to the spaghetti dinner before the event on October 14th! We've only got a limited number of reserved tickets to sell but unlimited take-out tickets. Email Debbie at with the number of tickets you will need. Thank you!

Friday, August 26, 2011

Good Day

August 25, 2011

Yesterday was a long day at the hospital as usual, but went fairly well under the circumstances. Randy started back at work this week, so it was our first week on our own and my dad came with to help. Drew was up early asking for food, so I did explain to him again that we couldn't eat until we went to his hospital and had his "pictures" done. He only complained for a minute. We left the house around 9am and all he talked about on the ride was all the things he wanted to eat - pancakes, eggs from McDonalds, strawberries with sugar, rice crispies. It was kinda funny because he would be quietly watching his movie and then all the sudden he'd throw out another food, but he was being so good about understanding that he had to wait. We got to our Audiology appointment around 10:30am and Drew was excited to show Papa how he does the hearing test and the results were perfect again. We had our appointment with his Neuro-Oncologist and made a plan to have the MRI and his Lumbar Puncture with chemo done, but then push back the next inpatient round another week and still start radiation this next Monday. He didn't get in for the MRI until 5pm, but I don't think he complained once all day. He did awesome! He did wake up from anesthesia very upset this time though and when he did calm down the first thing he said (or should I say yelled) was, "Let's go". Since it was so late, we weren't able to get any results from the MRI that night, so we just came home once he was up. His doctor called this morning with the results and the MRI was clean and everything looks good. These days at home are busy, trying to manage everyday homelife along with being a 24 hour nurse with all the IV meds and nutrition, but it was a good day! Now we just continue to work on healing and recooperating to get ready again for the next round. Here's some pictures from our good day.

Brooke started school today. 1st day of Kindergarten!

Dallin went with to take Brooke to school and when we got back in the car, he asked, "Where's Brooke?". concerned that we had left her there.

Drew kissing Kelsey goodnight.

Wednesday, August 24, 2011

One Day at a Time

August 24, 2011

After 11 days in the hospital, Drew was doing well enough that we were able to come home Monday night. He had a CT done on Monday which did confirm the pneumonia, but he had been without a fever since Friday night and his counts were doing great. The mouth sores had healed, but he still has some pain in his throat, which having to go under general anesthesia for the CT didn't help.

We were grateful for our day at home because now we head back this morning. He is scheduled for an audiology exam and then has to be put under again for his next spinal chemo and MRI. We will have to wait for his doctor to examine him and see if he is well enough to start this next inpatient round of chemo today or if we will delay a day or two.
Having to be put under general anesthesia means he can't eat anything since midnight last night and he is already up (5:30am) asking for cereal. It is going to be a long day because his MRI isn't even scheduled until 3:30pm which just seems cruel after all he has been through and now is finally at a point where he WANTS to eat. They have gotten to know Drew around that place though because he makes his presence known when he can't eat or drink and isn't very happy about it and they have gotten things done sooner in the past at that point. I just wish it didn't have to get to that point!

Thursday, August 18, 2011

Long Stay

August 18, 2011

We are still at the hospital and Drew is still continuing to spike a fever, but is doing better. His temperature is actually coming down with Tylenol which it hadn't been doing and he is going longer in-between spikes. His ANC (absolute neutrophil count) is up to 104 and as it continues to climb, we hope the fevers will subside. His vitals are good and his O2 saturation has continued to do just fine. His mucousy cough is almost gone and his lungs sound clear. He is still on 2 different antibiotics and an antifungal just to cover anything that may be causing the fever, but his blood cultures continue to come back negative (which is good). He is still in a lot of pain with the mucositis and mouth sores though, but that does seem to be improving too. They started him on a pain pump today and hopefully that will give him some better relief, so that he can rest. He's been up a lot today, still not wanting to play, but watching tv. We are praying that he will be better soon and we can all be back home together again.

These pictues are all starting to look the same.

Monday, August 15, 2011


August 15, 2011

So they are now saying that Drew has pneumonia. They took a chest film last night and there was a spot of haziness on his right middle lung lobe. He has had mucositis (painful inflammation and ulceration of the mucous membranes lining the digestive tract) since we got here and had been coughing up a lot of mucous. The doctors are thinking that he may have aspirated some causing the pneumonia. They have added another antibiotic and an antifungal. His fever is still pretty high and he is still pretty miserable. It's very hard to stay strong during these times. I feel like the week that we had off and Drew was doing so well fueled us up for this next round, but now I feel like I'm running on empty. When the fever is gone and his white count is up, I will breathe again.
His pillow pet is wearing the oxygen mask facing out because there was no way he was going to wear it. When he was sleeping they prepped him with sticky things on his cheeks in case they needed him to wear a nasal cannula, but his O2 sat has been good, so he hasn't had to.

Sunday, August 14, 2011

Save the Date! invites you to join us for
The Best Spaghetti Dinner in Town with a Live Auction!
Also featuring raffle items and split the pot!

Catering by Pal Joey's at Wheaton Bowl
Auctioneer: Jennifer Selcke
Fundraising event to raise $10,000 for 3 year old
Drew Ames and his fight with cancer

Friday, October 14, 2011
Wheaton Bowl, 2031 N. Geneva Ave, Wheaton
(Corner of Gary Ave. and Geneva Rd.)

Carry out meals Pick Up: 5:00pm-6:00pm
Limited Reserved Seating: 6:00pm-8:00pm Live Auction: 8:00pm
Raffles throughout the evening!

Spaghetti & Meatballs, Salad, garlic bread and Dessert!
Beverages must be purchased separately

Donation: Adults: $12.00 Each Children 10 Yrs & under: $8.00 Each
All proceeds will directly benefit the family of Drew Ames!

To purchase your tickets, buy ad space in the auction brochure or to donate auction items or raffle items please email Debbie at

Saturday, August 13, 2011

Busy Week

August 12, 2011

I think it's funny when I need to make an appointment for something (for example the AC people called and said it was time to schedule our yearly maintenance) and they ask me, "When would be a good time?". How about 48 weeks from now.

We have had a busy week. We came home from the hospital last Saturday night and had Sunday to relax a little, although Drew was still nauseous and vomiting.

Home health came and drew labs on Monday and his hemoglobin was a little low, so we went in on Tuesday for a blood transfusion. Brooke came along for the day since it was going to be a "shorter" day. She did a great job being a helpful big sister and Drew really liked having her there.

Have to visit McDonald's downstairs while at the hospital.

Brooke making a craft in the playroom with a volunteer.

The spider she made. We went and dropped it on doctors and nurses heads to scare them. She thought that was pretty funny and we actually did scare one of the doctors pretty good!

Painting pictures while waiting.

Getting blood transfusion at day hospital.

Wednesday we went and met with the radiation oncologist and Drew had his CT and sim to prepare for radiation which is supposed to start on week 7 of treatment. He had to be put under anesthesia again so that they could take an impression of his back to make a mold that he will lay in and also an impression of his face and head to make his mask that will lock his head in the exact position for each treatment. Radiation will consist of treatment 5 days a week for 6 weeks. He will be put under anesthesia each time. We feel very blessed to be able to be doing Proton Beam therapy at the new ProCure Center just minutes from our home. However, he will still continue chemo through those 6 weeks of radiation and anytime he is inpatient downtown, they will have to transport him back out for each day for radiation.

Thursday Home health Drew labs again and he received another dose of chemo at home. His labs from that morning looked okay, but he really hadn't been feeling too well since the anesthesia the day before and was vomiting more. Around 11pm his puke was dark green and when I called to let the doctor know, they told us to come in to have him looked at. So off we went to the ER. They drew labs again and by this time his white count was way down and his platelets were low. They took an abdominal radiograph to make sure there were no signs of obstruction and everything looked okay. He was dehydrated and needed a platelet transfusion so they admitted him for the night.

They finally got us a room Friday morning around 4:30am. I then left at 5:30am to go home and Randy stayed. I was able to get back around noon after getting the other 3 kids situated and now here we go again with the dreaded fever. It spiked this afternoon and with the low white count, that means antibiotics and blood cultures to make sure he doesn't have an infection and then we are here for at least 48 hours past his last fever. He has been sleeping all day and feeling pretty yucky.

Monday, August 8, 2011

Pain & Questions

August 5, 2011

They checked labs this morning and some of Drew's electrolytes were a little low. Not a big deal, right? Well normally they would just add the electrolytes to his fluids that are already running, but the magnesium is not compatible with his chemo, so they cannot be run through the same line, which means they had to start a separate IV today. It stinks because the whole reason he has a port is to avoid having to be poked so many times. The hospital has a vascular access team that solely does IV access and they are really good and fast. Drew did really well also. While he still screamed and cried, he sat fairly still without us having to hold him as much and instead of just yelling at everyone, he stopped and asked, "all done?"

These moments are heartbreaking. It is so hard to watch your child scared and in pain. I had a real hard time when we started chemo last month dealing with the fact that here we had what appeared to be a normal, healthy, active 3 year old boy who sure didn't seem sick and now here we sit pumping poison through his veins, making him sick. It just doesn't seem right. And then to feel like you really don't have a choice in the matter either, this is just what has to be done.

The day we arrived, we got checked in and settled in our room and they got the chemo started and then neurology came and hooked up the EEG. When they were done, it was quiet, dark and calm in our room. It was just me and Drew and as I was laying in the bed with him and he was playing on the iPad, he said, "Mom, what the doctors doing to me?" It was the first time he ever really questioned what this was all about. I explained things to him and he listened quietly as he played.

Friday, August 5, 2011

Round 2 - Cooperation

August 3, 2011

We started our second round of inpatient chemo today and things went much smoother with Drew cooperating more. He did all of his vitals without fighting, which again is a huge accomplishment. Usually he has to come fasted because he gets put under anesthesia for the spinal tap, so it helped that we were able to get his intrathecal (injection into the spinal canal) chemo done last week, so it wasn't so much all in one day.

We planned on having a 48 hour extended EEG (electroencephalogram) done while we were here at the hospital this time. An EEG monitors and records brain activity. Drew's neurologist has had him on seizure medication since his surgery because he said with the irritation from the surgery itself and how the tumor was pressing on the brain, there is a 50-50 chance over the next 3 months that he could have a seizure. Since it had been so hard to get him to take any medication and we have been having to do it IV, we really wanted to know if it was absolutely necessary. If everything looks ok on the EEG, then we may be able to get him off the seizure meds. What we didn't know was that while he was hooked up for the 48 hours, he wouldn't be able to leave the bed! He did great getting all of the electrodes hooked up and since he hasn't been feeling that great anyways, it hasn't been a huge issue with him wanting to leave the bed.

Getting the EEG electrodes put on.

Look at all those cords! His head is wrapped to hold all of the electrodes in place.

August 4, 2011

Thank goodness for legos! He has been really into them lately and they have kept him occupied while he has to stay in bed and while he's feeling sick and doesn't want to be up and about much. He did such a great job with everything yesterday that when I had to leave to go home, I told him I would stop and get the lego sets he has been wanting. I made it to Toys R Us with 3 minutes to spare and got a couple of the alien spaceship sets. We built one of them today.