I have been meaning to make a new post for some time now, but we have been insanely busy taking advantage of our time at home to get many things done. We have a crazy few weeks ahead of us and I am doing as much as possible to plan ahead.

We were able to look at the results of Gus’s most recent MRI and discuss them with Dr. Mazewski. The majority of the tumors scattered on the top of his brain have significantly shrunk down to little bits and some are gone! The tumors on his spine have also shrunk, but there is still a considerable amount.  Since the cancer has responded well to his chemo treatments so far and Gus is able to handle the chemo pretty well, we have decided to continue with two more rounds of the same treatment.  His final round of chemo will be the high-dose chemo along with stem-cell transplant. Good news also came back with both his hearing test and kidney test. Both were passed in flying colors.

We were given an extra week for Gus to recover from his infection and bring his counts back up. We were very thankful for this because it allowed our family to have a solid chunk of much needed home time. We were able to actually make it to some family events and birthday parties. We were able to celebrate Gus’s cousin, Cameron’s birthday with him and family.  Gus was also able to make it to his buddy Lucas’s birthday party, too. He had a blast! On Sunday we took him to the Fox Theatre to see Yo! Gabba Gabba Live! Our seats were awesome, right in the front, but it was a little too much for Gus to handle. We ended up having to move further back so he could watch in his stroller.

We haven’t had much time to prepare for baby girl’s arrival, so we were able to cram nine months of preparations into 10 days. I like to call it “extreme nesting.” We could not have done it without lots of help from our friends though. Thanks to Andy and April Harmon for helping me at IKEA and washing many loads of baby clothes.  Thanks to Dave Clarke and Gavin Porter for helping Tony with the grouting in our bathroom. Thanks to Mary Ann Bradley for doing laundry and playing with Gus all day. He really enjoyed it. Thanks to Cassie House and Stacey Loera for running errands for me. I’m sure it was like a scavenger hunt trying to find all the requested items. Thanks to Ryan Miller and Dave Clark for helping Tony with home improvement tasks. Thanks to Allison Fernandez for coming over and cleaning (you rock girl!) and thanks to her hubby Leonard for watching the kids so she could come over and help (I know it’s a team effort). Thanks to Rebecca Montgomery for coming over and helping me with some household tasks.

We checked back in to the hospital on Monday to start Gus’s fourth round of chemo and so far he’s doing better than he did last round. He is still vomiting, but that comes with the chemo. He’s been in a great mood though and his new favorite activity is spending time in the library. We expect to be here until Sunday or Monday.  So we get a day or 2 to unpack and re-pack for our scheduled delivery of baby girl on Wednesday, November 3 at Northside Hospital. I will be having my second c-section and will probably be in the hospital 3 to four days. My sister Haley will be flying in for a week to help with things and my mom will be flying in for the two weeks following. We fully expect Gus to be back in the hospital with an infection sometime during the week of November 8. This seems to be the pattern with his treatment, so we are planning on it.

Thanks again to all of you out there that continue to keep our family in your thoughts and prayers, please keep it up. Our family has been through so much these past few months and things are definitely about to get even more intense with our new arrival. Please pray for the safe delivery of our daughter and a speedy recovery for me because my little ones need me healthy and well ASAP.

xoxo Mama Bird

Thanks to all of you out there continuing to send us wonderful words of hope and support through e-mails, text messages, and signing our guestbook.  It really does help to read that you are keeping up with our family’s story and that you are keeping us in your thoughts and prayers.

After Gus’s third round of chemo, we made it home for a stretch and did our best to keep him comfortable and happy. This round has definitely worn him out and he has lost the energy to want to move around. Of course, seeing him in this condition, worn out and run down breaks my heart. He continued to vomit at least once a day while we were at home. At first, we chalked it up to cisplatin which is infamous for causing nausea and vomiting, but after several days, I started to get nervous. I was nervous that his tumor might be coming back or some other horrible problem was beginning. It turns out that his J-tube had coiled back into his stomach and his stomach just can’t tolerate feeds.

We were able to make it to our fundraiser hosted by our Meehan’s family on September 30. It was incredible. They had put so much love and hard work into it and it was a great success. We were able to see lots of our old friends and make lots of new friends. Thanks to Phil Roness, Steve Buero, and Mark Stillman, the Meehan’s owners, for hosting the event. Thank you so much to the entire Meehan’s staff that worked the evening. Thanks to Paige Hester, Ashley Helms, Ian Macken, Marisol Pluhar,Mary Bradley,  Lexi Corn, and Stephanie Friedel for making the event a big success. Thanks to the three awesome bands that played the event Amanda Meredith, Nine X Blue, and Nimrod. Thanks to Keith Roberts for making a beautiful video of the evening and thanks to all who shaved their heads for the Mighty Gus. Bald is Beautiful!

Click the link to watch Keith’s video from the evening’s festivities http://vimeo.com/15484540

Of course, thank you to all that donated funds to help our family during this difficult time. We have already been able to pay off our debts from the water fiascoes, purchase expensive prescriptions for Gus, pay off some medical bills and co pays for clinic visits, purchase a new baby monitor so I can take a shower while Gus is napping and be able to hear him if anything happens, and buy Gus a Little People Farm! He LOVES the Little People toys and we decided he should get a big toy after every round of chemo. This time he asked for a farm. We can’t say thank you enough, your generosities have been overwhelming and have been such a blessing to us.

While we were home, our friends Scott and Sabrina Euton came by to drop off a freezer filled with frozen foods donated to our family by Scott’s work. What an amazing blessing! It is filled with enough staple foods to last us through the rest of the year. Thank you guys so much!

I also got some good news from Viacord last week.  The National Marrow Donor Program has accepted our application for cord blood storage.  Our family has qualified for free storage of baby girl’s cord blood for ten years. Currently, Gus’s cancer would not benefit from the use of cord blood.  Unfortunately one of the side effects of his chemo is developing leukemia later in life. If this happens, he will be able to benefit from his sister’s cord blood. Another blessing as cord blood storage is expensive.

Gus’s clinic visit last Monday was pretty disastrous and turned into a rough day for us.  When we got there we were rushed through everything pretty quickly and the saline used to flush his line caused him to vomit all over the place. I felt so bad for him, labs came back quick and he had to get both platelet and blood transfusions. In the midst of the crying and chaos, my soda exploded in the stroller and spilled all over my laptop. Major bummer. So of course, we didn’t end up leaving clinic until 7. It was an exhausting day.

Wednesday, Gus woke up with a pretty high fever and his g-tube looked like it was brewing an infection, so we were admitted to the ER. He was immediately put on antibiotics and within an hour of our arrival his fever shot up higher and he got the chills, poor little guy, it really scared me.  There were no available rooms in the Aflac unit, so we were placed in another unit until a room became available. Unfortunately, this meant we had to change rooms at 11 o’clock at night.

His counts have started to come back up, so were able to go home today. His g-tube infection is pretty gnarly and it’s a constant source of pain for him. He was put on morphine over the weekend because the pain was so bad. During our stay at the hospital we were able to get his J-tube placed back in his jejunum and he had an MRI on Friday. We have not heard anything official yet about the MRI and will be discussing it with Dr. Mazewski on Thursday and will be coming up with a game plan for the rest of his chemo then.

We were also able to meet some really great little boys in the Aflac unit with the same cancer as Gus. Nolan Blake and Brayden Martin have both been battling Medulloblastoma for a year and are 2 tough little guys. I’m so happy that they have come into our lives as Gus now has some buddies to look up to. They’ve been through everything he is going through and so much more. Their strength is absolutely amazing. Here’s the links to their websites if you’d like to read about them, they are so precious. http://www.caringbridge.org/visit/nolanblake

http://www.caringbridge.org/visit/braydenmartin

We also met a little boy named Aidyn Reid who has been through so much and is only a few months older than Gus. His cancer is completely different and the doctors are doing all kinds of experimental chemotherapy on him as nothing has completely killed the cancer. His story is heartbreaking to me and he is so beautiful. Please read about him also if you have the chance. http://www.caringbridge.org/visit/updatesonaidyn

We did receive good news before leaving the hospital today. We were able to squeeze a hearing test in before we left. Gus’s hearing is still great! No signs of any hearing loss! Hooray!

Thanks to Jane Porter and Allison Fernandez for giving me an adorable baby shower on Saturday and thanks to all the lovely ladies that made it to the shower. Thanks to Ashley’s mom for making Gus a beautiful quilt. He loves it, you did an amazing job! Thanks to Gavin Porter and Dave Clark for helping Tony tile the bathroom and thanks to Liz May and her dad for coming out and mowing our lawn. We are so blessed to have so many benevolent and generous souls in our lives. We could not do this without all the kindnesses you have bestowed upon our family.

xoxox Erin