Thank you all for your prayers and love. We have been home for 2 weeks now and Gus is back to his normal routine – the busy life of a three year old!  We were able to go home the very next day after my last post. I knew if we didn’t get out on Friday, we would be there all weekend. I asked our nurse to talk to the doctors during rounds and tell them I was very comfortable with giving him his last 3 doses of IV antibiotics at home. His cultures had come back positive for ANOTHER virus. This one is called androvirus and is another very “common cold” type virus. It is not dangerous at all to normal kids and most adults don’t even register any symptoms. It is however highly contagious and is extremely dangerous to neutropenic kids (those kids with absolutely no counts and no immune system). So for the sake of the other kids staying in Aflac, we needed to go. Fine by me, we’ll be gone in 2 hours Doctors were very comfortable with me administering his remaining antibiotics and he was looking much better. So we made it home and my sister Haley and the kids stayed through the weekend to help us get back settled at home. She was our angel making us yummy meals and doing piles of laundry. Thanks so much to her and to our friend Jane who took care of Audrey during the days while we were in the hospital. Gus is still on antibiotics and will continue for the next 2 weeks.

He is still on hold for chemo until his platelets come up. Dr. Mazewski has also said she did not think school was a good idea for the next three months. Flu season is upon us and after this last scare, she suggests limited contact with the outside world.

Fortunately Gus was well enough for us to make it to Family Camp at Camp Sunshine. Camp Sunshine offers a weekend camping experience for families with pediatric cancer. It was our first camp experience and it was wonderful. It is truly amazing how this organization offers such a special experience to families going through these rough times. We were able to meet new families and spend time with those we already knew. They offer a wide variety of activities for the whole family. We tried as many as we could, but Gus is still not feeling 100% and both of the kids schedules were very off  (going to bed late, getting up early, sleeping in a strange place, etc.). We made the most of it though and it was great to just get away for the weekend and spend quality time as a family. We got some fishing in, arts and crafts, and drumming in the coolest tree house we have ever seen. Follow the link for pictures from camp. Camp Sunshine Pictures!

Tony and I were also happy to celebrate our 5th wedding anniversary that weekend. We were married on our 5th anniversary of the day we met, so we’ve actually been together 10 years. It would have been nice to have a romantic dinner, but money is very tight, so we were happy to spend it with our 2 love bugs. We have been through so many life-altering changes in the past 3 years. Our life has been EXTREMELY stressful since Gus was diagnosed and it is easy to see why so many marriages don’t make it through something like this. I am thrilled to say that it is quite the opposite for us. We have grown so much closer over the past 15 months and our love is that much deeper too. We lean on each other every day. We laugh and smile about weird things that no one would think funny unless they had endured what we have endured. I am a strong mother for Gus and Audrey because I have Tony and he remains strong for our family because he has me. We make a great team and beautiful children. We are truly blessed to have each other.

So coming up we have Halloween, I’m still trying to convince Gus to wear a costume. He is extremely stubborn about certain things and this is one of them. We also have little Lady Audrey’s first birthday next week. I cannot believe its been a year already. Time flies when you are fighting cancer!

Thanks again for all your prayers and support. A special thanks to Sherry DeMond for the gift cards that could not have arrived at a better time and were a huge help. Also a big thank you to Suzie Ruddle for making us delicious frozen meals. All the food has been a huge help and we appreciate it so much.

Much love to all, I hope everyone has a fun Halloween,

xoxo Erin

We are still here at Sottish Rite. After days of labs, cultures, and tests we finally have some answers and even better, some solutions to the problems. Gus has three different things that he is battling.

Cytomegalovirus (CMV) is the first.It is in the same viral family as chickenpox and mononucleosis.CMV is a common infection that is usually harmless. Once CMV is in a person’s body, it stays there for life. Among every 100 adults in the United States, 50–80 are infected with CMV by the time they are 40 years old. Most healthy children and adults infected with CMV have no symptoms and may not even know that they have been infected. In Gus’s case, they think he had it already and it was dormant. His already weakened immune system was busy fighting other problems and the CMV became active and began causing or worsening problems. This could be responsible for his fever, sore throat, and fatigue. It actually could have gotten a lot worse if it had entered his blood stream. The good thing about having CMV is that there is an IV antibiotic available for it.

The second virus found is parainfluenza. This virus is a cousin to influenza, a milder version. Parainfluenza is usually responsible for croup and pneumonia. Fortunately Gus did not develop these,  just a mild cold. This could be responsible for his fever, cough, congestion, runny nose, body ache, fatigue, vomiting, and diarrhea. There is no remedy for this except to let it run its course.

The third thing we believe is mucositis. For those of you that followed his blog back during his rough days of major chemo, this was a common and extremely debilitating side effect of chemo for Gus. Mucositis occurs when chemo breaks down the lining of the mouth, esophagus and GI tract. The body sheds the lining over time and excretes it in the stool.

So if we put it all together there is no way his immune system can handle it and it makes for a very sick little boy. His doctors reminded me that he may have okay blood counts but his marrow was completely wiped out in January and there are not enough antibodies being produced to fight off all the infection and viruses we come across on a daily basis.

So this was definitely a wake-up call for us. A reminder that we need to be much more careful with Gus. We are probably going to have to reassess Gus in school, especially with flu season on its way.

I’m not sure how long they are going to keep us here. I was hoping they would let us go home tomorrow, but I haven’t heard anything. The antibiotic he is on for CMV is an IV medication and we are trying to determine if doctors will let us give it to him at home. I’m starting to get stir crazy and it sure is lonely at night. Gus is in isolation and not allowed to leave his room which means I can’t leave either. We miss Audrey and Tony like crazy too. My sister Haley drove up from Florida to help with Audrey, laundry, errands, and meals. She’s such a life saver and it was just awesome to see her beautiful face.

Thank you so much for your continued prayers for Gus and our family. Gus is on the mend, he showed a little improvement yesterday and a lot of improvement today. He sat up by himself for the first time in quite a while. He has started talking more, playing, and he even laughed and smiled today thanks to a visit from his cousins Maddie, Jackson, and Levi.

Hopefully in my next post we will be home.

–Mama E