I wish I was posting better news, but Gus is still very sick. He’s actually worse off than he was last week. He definitely has a wicked cold, possibly a virus. Audrey has also gotten the cold, so our hands are pretty full taking care of our sick little angels.

We spent all yesterday at Gus’s clinic appointment and he slept almost the entire day. He had a  fever throughout most of the day. His platelets have dropped to a point where we have to stop chemo, I knew it was coming soon and honestly, I’m grateful. I know that it’s not just a cold keeping Gus down. All of his other counts – white blood cells, hemoglobin, and his ANC are okay, so Dr. Mazewski isn’t too worried about him. He lost 3 pounds in just a few weeks which is no suprise since he’s had lots of vomiting and diarrhea. He received IV antibiotics and fluids at clinic yesterday and I got the thumbs up to start him on some supplements I have been wanting to try to help boost his counts.

After we made it home last night his fever got up to 102 and I was worried, so I called the on-call doctor and he said we had already done everything necessary at clinic earlier that day. I kept an eye on his temperature and it was fine through the night. He slept very peacefully and woke up this morning in a great mood. His temp. was good he was smiling. The first words out of his mouth were “Mommy, I want to play!” I was sooooo happy. He was chipper and smiling for about 2 hours. Then he crawled back into his bed to watch a movie and fell asleep. It was pretty much downhill from there. Fever came back along with the diarrhea and vomiting  he has had for over 2 weeks now. Ugh! I feel so bad for him. I wish I could do more. So for now I am continuing to monitor his temperature and trying to keep him hydrated and comfortable. Fortunately Gus takes great comfort in snuggling with mommy right now and I feel so blessed to be able to snuggle up and wrap my mighty little man with arms full of love.

Please keep him in your prayers! He needs as many as he can get. Tony, Audrey, I could use a few too!

Hopefully my next post will be with good news of Gus’s health improving. We love you all and are so blessed to have all of you in our lives. Thanks for all the wonderful messages of prayer and support. It is so encouraging for me to know Gus has an army behind him.

xoxo Mama E

P.S. Chemo sucks!

It’s been quite a while since my last post. The kids are quite a handful these days. We had lots to keep us busy. As most of you know, September is National Childhood Cancer Awareness month. I took Gus to the Children’s Museum for a kickoff celebration for the month. This was his first trip to the museum and he had so much fun, in fact we were there until closing and the last ones to leave.
Children’s Museum Pics

We also had the opportunity to visit an apple orchard with Camp Sunshine. We drove out to Hillcrest Apple Orchard a few weeks ago and had sooooooo much fun with the kids. There was a tractor ride, a petting zoo, pig races, and apple picking too. It was good timing, everyone was feeling good, the weather was nice, and we were all able to go as a family. We definitely made some good memories and we are so grateful to Camp Sunshine for organizing the trip.
Apple Orchard Pics

Gus finished his second round of chemo like a champ.There were some weird side effects – leg pain and cramping, constipation, and bad dreams. His counts were dropping a little, but he was still doing great. We were so happy that he wasn’t having nausea and felt good. He was able to make it to school at least 3 days a week.

He started his third round 9 days ago and unfortunately it is not going well. He is very sick. As soon as he started, he went from constipation to awful diarrhea. His counts dropped drastically and he has been unable to tolerate a normal day of feeds. He couldn’t keep anything down and I had to take him off his feeds for 24 hours and rehydrate him with pedialyte. He is very weak and extremely fatigued .  He needs a lot of assistance walking. His platelet count has taken the biggest hit dropping 40,000 in just a week. We normally check counts only once a week, but I was advised to take him in again to check for another huge drop. If they drop another 40,000 we have to stop chemo. Fortunately, they only dropped another 10,000. He has also developed a runny nose and cough and his blood work today led Dr. Mazewski to think that this isn’t all from the chemo, but more likely a virus. I do anticipate stopping treatment by next week due to low platelets.

So now I am on a mission to get his counts back up. I am waiting on approval to start some supplements that claim to boost immune system function as well as platelet count. The supplements are of course expensive and are not covered by medicaid or insurance. Money is very tight, so we will have to make some sacrifices. We are willing to do whatever it takes though.

Please keep our precious little boy in your prayers, he needs lots right now. I am grateful for the amazing summer that we had with him while he was feeling good and I’m hoping that we have a wonderful winter ahead.

xoxo Mama E

P.S. Have you seen any of the Cure ads on TV or online. Gus’s beautiful bald head is in them. Here’s the link if you haven’t seen them. He looks so different now. It’s amazing how much he’s grown since then.
Cure Commercial