Payton had been in the hospital for 4 days, not walking, only standing to pee, while his dad and I hoisted him up and held a urinal for him. He could speak, but it was hard to understand him as the tumor was taking over his entire brain. We would ask him to repeat himself a lot, which I know frustrated him and we could see it had taken a lot of energy to get it out the first time. He would then tell us we needed new ears. Several times he told me “You need to go to the dentist to get new ears!”. He was very understandably irritable. This day, he wanted to go to the snack room on floor 9, where he was hospitalized. He hadn’t been in the snack room since diagnosis nearly 6 months earlier, and it had a combination code to get in. As we unplugged the machines from the wall to bring his IV pole with us, we asked him if he wanted to ride in his wheelchair instead of walk. His determination to walk gave me hope, “Maybe he’s going to be just fine”, my hopeful mind thought. As Jason and I held onto him and the IV pole, we walked out of the room. He was slow, and a bit unsteady. By the looks on their faces, and cheers in their voices, I don’t think the nurses could believe their eyes. Approaching the snack room he interrupted his dad’s reach to reach on his own, for the combination. We started to tell him the combination when he immediately stopped us, “I KNOW!”, he grumbled. He did. He remembered the 6 digit code to get in the snack room from nearly 6 months ago! As soon as we got in, he had to go pee, so back to the room we went. We took him back in the chair, as the walk wore him out. He looked through food, food that he couldn’t eat because of the sores he had in his mouth and throat, for a bit before choosing a popsicle which we would soon find out was a bad idea. The tumor took so many things from him, but it never took his amazing memory, his determination, or his love for everyone away from him.
Grieving a child is waking up, only to realize the nightmare isn’t over. Grieving a child is replaying moments of your child’s last week alive over and over in your mind. It’s second guessing every decision you ever made during that week. Grieving a child is feeling sick all of the time, even on your healthiest days. It’s kissing the box that holds what is left of your child after cremation, wishing you had something more of them to hold onto and kiss. It’s going through the motions of your day, with thoughts of your child clouding most of your tasks.
Some memories haunt you, others bring you joy. Thoughts of the future they never had push you to your emotional limit. Then comes the sobbing, unable to catch a breath, tremendous pain in your heart. Your phone rings and you snap back to reality, everyone else’s reality, not your own. Grieving a child is not washing the bath towel because it’s the last one he ever used. It’s pushing yourself to do what once came naturally, and not doing some of it at all. It’s secretly snubbing your nose at the friend who is sad her cat died, where that was never in your character before. Grieving a child is going to bed at night feeling lost and empty, squeezing the bear that says “I love you mom”, in your child’s voice that you had them do because you knew they would probably die. It hurts, but you do it anyways because you need to hear his voice. It’s lying down snuggling his koala bear stuffed animal, because it’s the last he ever slept with. It’s saying goodnight to an angel every night.
The pain is always there. The intensity of it varies from minute to minute, or sometimes hour to hour or even day to day. My pain tonight makes me contemplate life. I have thought of ways to end it all. I could take my husband’s gun to the end of the driveway, or even to the end of our road and dial 911, then tell them quickly that I’m about to kill myself and to please send someone quickly to clean up my body so my kids don’t see, hang up, and just be done with the pain. Then I think about how hurt my kids and family would be, I can’t hurt them like that. My mom would lose a child as I have. I can’t put her through this pain. I wouldn’t wish this on anyone. There is a constant heaviness in my chest, heartbreak I suppose. It lingers with me through every day and worsens in times of heavy grief, which come in unexpected through the days. There are times in each day that the damn breaks and my tears just flood through. This crying, it’s like nothing I’ve ever experienced. I don’t cry “normal” anymore. I literally just sob and wail uncontrollably. Afterwards I feel a slight relief, for a period, until the pain builds back up and something opens the flood gates again. It can be the littlest thing, like seeing a Pizza Hut commercial and remembering the last time we ate Pizza Hut was at Great Wolf Lodge and Payton was in so much pain he couldn’t eat any. He kept saying how good it looked. I feel guilty for eating it in front of him, although we did get him his favorite- mashed potatoes. The worst is just missing him. I want to touch him, hug him, scratch his back, love on him. Knowing I will never do this again until I get to Heaven is the most painful thing ever. I miss him so much.
2 weeks. We have somehow survived 14 whole days without our baby. I’m not sure how, but we have. There’s not a minute of awake time that goes by that I don’t think of him, and miss him. Not 60 whole seconds straight in any day that I don’t want him back with everything in my soul. The pain in my chest barely subdides and I know this is true heartache showing it’s presence. The longing is a powerful and indescribable pain. I’d give anything to hear his voice, give him our special goodnight kiss, have him hold my hand, or scratch his back. I just miss him. Flashbacks of his last breath pop in my head multiple times a day, I hope that goes away eventually. I can’t stop thinking “Did I say the right things? Did he hear the things I said? Was he comfortable? Etc”. The ONLY thing I want to forget about him is that last breath when the color left his beautiful face, and he was no longer inside of his body.
I found myself not being able to picture his voice saying certain things in my head today. Why? Maybe because I haven’t heard it in 2 weeks? But I have to live the rest of my life not hearing it? I hope it was just today and tomorrow will be different.
I can feel a change in myself that I am so afraid of living with for the rest of my days. Although we kept busy and surrounded by amazing friends and family all weekend, and there were a lot of happy times, the saddness still lingered there inside of the happiness. It’s like our new kind of happiness is not full, it’s a broken happiness. If you can picture a jawbreaker where the outer layer is the happy and the inside colors are all types of sad, that’s how it feels. Maybe the layers will change in time, but the fear of it staying that way hurts.
I feel Payton’s presence in everything I do. I found myself so angry today after picking up the last book he, himself, ever read. He barely learned to read. He deserved to learn to read. Maybe if there was more funding for DIPG he could have learned to, along with all of the other things he never got to do.
This is the last selfie he ever took on my phone. I wonder what he thought of himself. His looks changed so fast because of the steroids he was on, the look in his eyes makes me wonder what he was thinking here.
I knew this was going to be hard. I knew it would hurt, but I never knew a pain of this kind existed. Everything makes me think of him. You go to choose a shirt to wear and the “Mommin’ ain’t easy” shirt you wore so often through radiation treatments and hospital visits to bring some humor to the horrible situation you were in, it isn’t funny anymore. You’re looking for your shoes to get ready to leave, and you spot his favorite pair, the red ones that light up, that he hadn’t even had a chance to grow out of yet. You walk out of the house but it doesn’t feel right “leaving without him” so you grab a picture of him to bring with you. You’re driving in the car and his favorite song comes on, your first reaction is to look back to catch a quick glimpse of the excitement on his face when he realizes what song is on..but he is not there. There’s an unopened chocolate milk on the passenger side floor that he couldn’t drink because his body was failing him. You cry over the damned chocolate milk for God’s sake. You see a mother yelling at her kids in the store..you used to be that lady…You’ll never be that lady again for more than 1 reason. You avoid the Easter aisle like the plague as you already know there are far too many things he would have loved, Hulk shaped eggs, stuffed bunnies wearing capes, probably a ninja turtle shaped basket. You’re watching TV and a talking dog comes on the commercial, you look over to laugh with him about it, and it hits you like a ton of bricks for the 24th time this week, that he’s gone. Then you find a large manilla envelope of pictures and notes from his friends at school that we never had a chance to look at and you can’t bring yourself to open it because it hurts enough just knowing the envelope exists. This is just a miniscule look into how the days have been. I cannot believe tomorrow has been a week since we touched his soft skin, or kissed his little puckered lips. We miss our Payton Pie so much.
We came home today. Payton’s oxygen levels have dropped so we are keeping him on oxygen for the time being. He is sleeping sound snuggled with his pup who missed him so much. We would like to welcome any and all family members to come over anytime, for any amount of time you’d like, same goes for close friends (you know who you are) no phone call or text necessary, just come on over. While some may want lots of privacy/not a lot of visitors in a time like this, we are feeling a lot more comfort with the support of our family and friends being with us. Payton says “anyone can come over and they can stay forever”❤. Tonight his Grandma, aunts(10 year old twins), and cousin (8 years old, 6 months older than Payton) stayed the night and he requested they all sleep in our room with him, so the floor is full of kiddos who love him and he has mom, grandma, and Paisley in bed with him. For those coming to “say good bye”, we’d like everyone to know that 1. Although it may seem like he’s “out of it” or sleeping, his thinking/knowledge is 100% still intact (for example, I said to someone yesterday, thinking he was asleep, “He was so tired” and he perked up and said in an angry tone “I’M NOT TIRED”) Please keep in mind he hears all. And 2. Be prepared to not take some things he may say personally, as he is in the most horrible position a child could ever be in, and he says things he does not mean 😔
I may not update again for awhile but we want to thank the thousands of people who have been praying for our sweet boy. May God bless each and every single one of you💛🎗💛
I’m not sure where to start. Our hope has been shattered completely today. The MRI showed that while the tumor in his brainstem has not changed, it showed there are many new tumors in the top of his brain, which are causing him to be very sleepy. This only happens in about 6% of brainstem tumor patients. He may be awake and alert for short periods but will be sleepy most of the time and the periods of alertness will lessen and shorten as time goes on. Our goal is to get his mouth/throat ulcers under control, then bring him home on hospice to keep him the most comfortable we can and just love him. He has said several times over the past few days things like “I’m going to die” and last night “I just want to go to Heaven, it’s probably a lot better there”. I told him “It is, it’s the most beautiful wonderful place in the whole world”. Although we have not told him, I feel he knows what his future holds. I told him “I wish I could take all of your pain so you wouldn’t have any”, he told me “I will slap you in the face, you don’t want to die”. Truth is, I do want to die and go to Heaven with him. How do I stay on this earth when such a huge part of me will be gone? Payton does not deserve this. He is the most loving, caring, smart 7 year old I know. He is perfectly perfect to me, and I want to keep him forever but I don’t want him to be in pain. With the new tumors making him sleepy a lot, he probably won’t notice his functions leaving him one by one as much. These tumors are a blessing in an evil disguise. He is very sad and wants to go home. He misses his family and his puppy. We want to bring him home of course, but not until they can get his ulcers under control.
“John 14:1-4 ‘Let not your hearts be troubled. Believe in God; believe also in me. In my Father’s house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also. And you know the way to where I am going.’”
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)