Payton had a rough night and morning. He’s not been awake except to go potty and has needed morphine every 2 hours. The medicine he was given for his white blood cells did not make a difference and they found a microorganism in his bloodstream. They will continue to work on getting his white blood cell counts up. They have him on antibiotics and are doing an MRI today to see if the sleepiness is being caused from the tumor or just the pain meds. Jason and I met with the Hospice worker which was rough but at least we know how to proceed with them if need be. We will be here at least a couple more days.

Our little guy is not feeling so good. He is experiencing a lot of pain while eating and has been aspirating some of his food/drinks. His oncologist said the loss of the ability to swallow is often one of the most troublesome side effects from brainstem tumors and we spoke about placing an NG tube so he can still get his meds and some nutrition. I talked to Payton about this in a kid-friendly language and he talked about a little girl from his school who has one and he is not showing any fear of getting one. Myself, as well as Jason, are not wanting to do this…I guess it makes it feel more real that our son is nearing the end of his life and we are, and never will be ready for that. Payton’s pain is very real and he has practically begged us to “just take me to get the tube so it won’t hurt”. We see his oncologist Thursday for a second round of Avastin and to see about the NG tube. I just want my baby to be pain free.

Wow, it’s been a long 3 days and we are happy to be home! Payton finally got to see Mexico, not for the reason I would like to have taken him there, but he did. The clinic was great. We were there all day, which was exhausting, but we met some great people. While waiting, there were these HUGE books full of handwritten testimonies from many people who have gone there over the years, which I read a lot of. Many have been going there for years, with good results, including tumor shrinkage and many cancer free after using the treatment! One that really stood out to me was (written by her mother) a little girl diagnosed at 2 years old with a brain tumor. Her mother wrote that the doctors had told her it was the worst kind, and gave no hope. After flipping the pages a bit, she had written again…the little girl had been going to the clinic for 6 years and was then Cancer free! Jason said to Dr. Gutierrez, “the doctors in the US say Payton only has 9-12 months to live”. Dr. Gutierrez’s reply was “Well, let’s see if we can’t just disappoint them”, with a smirk on his face. They gave us hope, and although we have not strayed from reality of what could happen, we are feeling good about the medication and care he received. He will start his new medication and diet tomorrow. It was a change of scenery for sure, both physically and emotionally. The doctor was so positive, and doubted nothing. I want so badly to be like him❤ We thank you all for so many prayers. In a time like this, knowing how much support and love we have out there helps more than we can say. Here are a few pics from Mexico 🙂 Payton also brought home some pesos which he thinks are super cool (I do too)

Well, I wish I could post an update saying the MRI results were amazing, but sadly they were not what we hoped and prayed so hard for. The tumor did shrink 2cm, which is not a significant shrinkage. Unfortunately, the necrosis (cell death) he had in his cerebellum has gotten quite a bit bigger from the radiation. It is difficult for doctors to determine if this is pseudoprogression (caused by radiation) or tumor growth, but Payton’s oncologist believes it is NOT tumor growth. It has been very hard for me to think positive today which is one of the reasons it has taken 5 hours for me to post an update BUT this is NOT over. We will continue to fight this nasty tumor with any thing we can get our hands on that won’t harm him. On the positive side of Payton’s appointment today, his uvula (hanging thing in throat) is straight unlike when he was diagnosed and he is not having trouble swallowing which is something that often comes with DIPG and can be dangerous. His breathing is normal. His walking is pretty good, he does trip sometimes, but there hasn’t been a change. We are trying to wean him off steroids to get away from the horrible side effects, but Payton’s oncologist does not believe we will be able to get him off because of the necrosis, inflammation, and fluid in the brain so that was discouraging. Overall he is physically stable and for the most part in full form personality wise and that’s something to be thankful for. Today, I have felt like throwing in the towel, I’ve felt helpless and very down, but tomorrow is a new day and the fight will go on! Thank you all so much for lifting our beautiful son up in prayer so much over the last few months. I do know prayers will not interfere with God’s will, but I won’t lose hope thaf a miracle could happen.

He doesn’t know, that I’m crying behind this smile.
He doesn’t know, that his head on my shoulder is all I need.
He doesn’t know, that my heart is hanging on by him.
He doesn’t know his odds. I can’t allow him to see the fear and pain I am enduring during this time. This consumes my life. This grief I am dealing with is confusing..he is still here, and I’ve not lost hope, yet I mourn the loss of a son that “used to be”. He used to be full of energy, wild, and defiant. He used to run so fast, I’m not just saying this, I mean it. He was the fastest running kid I’ve ever seen. Now it’s not the easiest thing for him to walk with so much extra weight on his naturally little body, although I’m very grateful he still can walk. I ask myself “Why has God already taken so much of him?” “Is He preparing me for the worst to come?”. Some days are harder than others and today is one of them days.