We made it through the weekend, but just barely. Gus’s pain continued to increase and managing it was extremely difficult. We began to prepare for a hospital stay. Monday morning I scooped Gus out of bed and took him in for his first radiation treatment. He practically slept through the whole ordeal which was great. After treatment, I immediately took Gus over to clinic for admission processing. The  Aflac wing was completely full and we had to wait for a room to open up. There were apparently quite a few admissions, but we were fortunate to get bumped to the top of the list. While we waited Dr. Mazewski was able to spend quite a bit of quality time with us and was extremely compassionate towards our position. She adores Gus and it was difficult for her to see little man in so much pain. She put in orders for all of my requests including the GI team and the pain management team. She suggested I meet with the palliative care team, which apparently is a newly developed team called PACT, Pediatric Advanced Care Team. Claire raved about every member of the team and what a great job they were doing and I was happy to meet with them.

We were admitted around 4 pm and the head of the pain management team was able to make it over and help us begin a path to making Gus as comfortable as possible. We didn’t want to make too many changes at once. We started with a few things we were certain would help with brain and spinal swelling and nerve pain. Headaches are the main pain that is agonizing to him. Claire described it as a very sharp seizing pain for a few seconds that dulls over a minute and comes right back with movement, noise, light, etc. In Gus’s case it seemed like it was happening a lot and causing excruciating pain. Gus made it through the night with the help of morphine, unfortunately he vomited twice in his sleep so he didn’t get as much rest as we had hoped.

Tuesday we were transported to Emory for treatment by ambulance. It was a first for both Gus and me. I thought it was pretty cool, but Gus was too sleepy to enjoy. We made it to treatment and back to Scottish Rite. He was extremely nauseous when we got back and vomited 6 times over the course of a few hours. I met with all of Gus’s docs and we discussed pain management as well as GI issues. We all agreed on a plan of action. Gus seemed a little improved and slept a lot. The day was absolutely exhausting. We decided to give his gut a break and put him on TPN (IV nutrition) for a few days and changed all of his medicines to IV. He slept well with no interruption.

Wednesday morning he woke with a smile on his face, the first I had seen in a while. Oh, I can’t tell you how happy it made me to see him smiling. We rode in the ambulance again to Emory and he sang BINGO on the way. Unfortunately by the time treatment was finished and we were headed back, he was feeling irritable and uncomfortable again.  He was definitely more alert and still much improved.  PACT came to meet with Tony and I. They wanted to meet us, meet Gus, and find out what our goals were for Gus and the family. They will be involved in Gus’s care for the rest of this journey.

This morning at Emory we were waiting to be called back for treatment and Gus started showing some signs of major anxiety. He moaned and rocked himself from side to side. Tomorrow we will try some Versed when we arrive to see if it relaxes him a bit while we wait. All in all though he had another progressive day. I was finally able to get him out of the room and we went on 3 walks around the hospital in the wagon! He ate a bite of a cookie too! He even took a few steps today with some assistance. He is still very weak and fatigued. We also started to run Pedialyte in his feeds at a VERY slow rate to see if he tolerates it. So we will continue to see how he does tomorrow and try to get him back on formula. We are in no rush and want to ease Gus into all the new changes. We really do not enjoy being stuck here, we miss Audrey and Tony like CRAZY, but this is where Gus needs to be right now. Once I feel we have a solid plan in place for pain management and symptom control and a home nursing service has been established for us then we can talk about going home. Docs seem to think sometime next week would be a good goal.

Thank you to everyone out there praying their hearts out for Gus and our family. I truly feel that things have run so smoothly here thanks to all of our prayer coverage. There are so many to thank as well for all the meals and gifts and donations, etc. Your are certainly lightening the load and we appreciate all your kindnesses. Thanks to the lovely Mary Bradley for organizing meals and help and to Jane Porter for taking care of our little ladybug Audrey this week.

I am beyond exhausted and am ready for sleep–

Keep fighting the good fight!

xoxo Mama E

This past week has been one of the roughest weeks of my life. Tony and I were faced with an incredibly tough decision.

On Wednesday we met with the radiation oncologist at Emory, Dr. Natya. The meeting was pretty intense. We were filled in on all the details of possible treatment for Gus. I asked her if she had seen Gus’s MRI, she had.  I asked her what she thought, she said it was one of the worst she had seen. I felt like someone had punched me in the stomach. We went over the lengthy list of side effects for radiating the brain and spine using this type of radiation. Dr. Natya did confirm that this treatment would definitely help him feel better. We didn’t agree to anything then, but I did bring Gus back on Thursday for “simulation” to prepare for treatment and get the ball rolling if we decided to do this. I was still really on the fence about it and didn’t want to make any decisions until I had spoken to Dr. Mazewski.

She called me later in the evening and I gave her every single concern and question I had. She gave me some really good advice and mentioned how well Gus has taken everything we’ve thrown at him. I felt much better. Later that night Tony and I laid out all our options and pretty quickly came to a decision.

FIGHT!

Fight with everything we have, that means radiation and chemo. We are not giving up! Its time to get in war mode!

We start radiation on Monday. Treatments will be every day Monday-Friday for 4 to 6 weeks. After 2 weeks of radiation, if Gus is handling it well, we will start chemo.

Gus is in really bad shape. I can feel the tumors on his back. He is in constant pain and is so miserable. We have put him on morphine and a fentanyl patch as well as decadron to alleviate pain caused from brain and spinal swelling. Everything hurts, his headaches are constant, and he has really bad episodes complaining and screaming that his throat hurts. I am thinking he is having more severe reflux. We’ve been debating all day whether or not to admit him into the hospital today. Dr. M had suggested we may want to admit for a few days to get his pain under control. We have decided to try and tough it out today, get to our first treatment tomorrow, and then go straight to Scottish Rite for admittance. Once we are admitted, he can be transported to treatments everyday. We are worried that if we admit today, because its a Sunday, it may delay our beginning treatment. We cannot delay one more day. Also there will not be the team of doctors there today needed to correctly diagnose the pain. So hopefully we can continue to manage his pain with the morphine until we can get to the hospital tomorrow.

Yesterday, Tony and I moved our futon from downstairs to replace Gus’s toddler bed. He has pretty much outgrown it and it is now very uncomfortable for him to sleep in. He also enjoys the comfort of having one of us laying next to him. He now has more space to spread out and we can rest next to him comfortably. We are trying our best to make him as comfortable as possible. This will do until we are able to get him a real bed.

We are overwhelmed with the love and support everyone has continued to send our way. I know that Gus and our family are covered in prayer thanks to all our prayer warriors out there. So many of you have reached out to us wanting to help. We are sooooo exhausted and would appreciate any kindness offered during this extremely difficult time. My lovely friend Mary Bradley has offered to help organize all assistance. She has a list of our specific needs. If you are interested in helping out please contact her at marynificent@gmail.com.

The next 2 months are going to be tough on all of us. I will try to post more updates in the coming days when possible.

xoxo Mama E