Monday, August 29, 2011
Friday, August 26, 2011
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.
Wednesday, August 24, 2011
One Day at a Time
Thursday, 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.
Monday, 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.
Sunday, August 14, 2011
Save the Date!
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 email@example.com
Saturday, August 13, 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.
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.
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
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.