The worst part of this Journey, Peyton’s Journey, began on October 15th, 2013. I have not been able to really put a lot of information out there because of how involved his care became at this point. There was no time to do anything; we (mommy and daddy) were constantly caring for him, constantly making sure there was nothing else we could do to make him feel better or more comfortable. I think I spend at least thirty minutes positioning him just to make sure that no arm, leg, finger, or toe is out of place. I do want to go back and highlight some of the terrible things that happened to our baby Peyton. This unforgiving disease gives not one minute of relief, this cancer is constantly taking, taking, taking. I have to get out there what actually happens, I know that everyone tell you what can happen, or what should happen, but this is what really happened. 10/15 overnight the episodes were too much for him to handle (I think I did write about these, there should be a post explaining what he went through.) 10/16 morning was better, lots of pain medication, I asked for a steroid to take down the swelling in his head, doctor agreed to it, nurse brought it out, he had instant relief. It worked and the swelling was reduced significantly he fell asleep, finally. He slept for hours and hours, his little body was so worn out from the pain, and intermittent swelling in his head. This may not make any sense but I can describe these episodes like contractions. They began slow, come up to an excruciating point, and go down slowly. As this was happening I can feel the swelling in the back of his head become more solid and then soft again in the same pattern. I was terrified that his brain would herniate. A few hours went by and the out of the blue, Peyton suffered a fast and hard flood in his lungs; pulmonary edema. This was difficult to watch, maybe comparable to how he looked after surgery. He was drowning right in front of me, suffocating in his own fluids. The steroid that reduced the swelling was great, but it released the fluid from his head, pulled it back into his circulation, and his body could not handle it, it settled into his lungs. This was it; he only had hours to live (that’s what we were told.) The nurse gave her speech, in efforts to prepare us for our loss and warning that the end was near. We called everyone to come and see him one last time, Garrett and the girls came to say their goodbyes. I gave all the kiddos a special bear/toy and a blanket that Peyton always played with to remember him by, they loved it. I could see the sadness in their faces. 10/17 Peyton kept on fighting and we were able to see the sun come up together one more day. It wasnt an easy day because it sounded like someone opened his mouth and poured in a gallon of water, and he was breathing through it. Medications for secretions were maxed out and increased. We were giving them every half hour to control what little we could. He was overcome by fluid and I wanted to breathe for him, it sounded like he was going to drown right in my arms, right in front of me. 10/18 He made it through night. Hospice nurse came back out to visit and assess how bad Peyton was getting. Lethargy, fever, and unresponsiveness set in. Increase in medications, suctioning his little nose and mouth so much that it started bleeding (if we didn’t he was fighting to breath, gasping for air, trying to breathe through it, a terrible sight for any mother and father to witness.) He was not responding to our voice, touch, or movement. Somehow he was still able to breathe through all of this and his vital signs were stable. 10/19 Yet, another day of fluid filled lungs and respiratory distress. I couldnt take it any longer, Peyton was fighting so hard to breathe, the least I could do was fight to get him some medication that would help. I asked the nurse for Lasix, the doctor approved it and we went to get it. To my amazement not thirty minutes after we gave it to him he was breathing clearly. I knew it would work, I wish I would have fought harder before three days had passed. I have never before in my life breathed such a sigh of relief. When I heard his lungs, or didnt “hear” his lungs bubble and gurgle and he could breathe easily I let go of so much anxiety. It was truly like the world had been lifted from my chest. That night was a little difficult; we dried his secretions out so much that he started to become blocked off. He was not able to clear his secretions and with all of the medications to dry his body out they became too thick and we had to suction them out, over and over and over. 10/20 It was Sunday and he slept the entire day now. Overnight we were able to help him clear all of the left over secretions. Now that he could breathe easily he was able to rest. The pain was under control and he started to wake up more. He felt so much better that he actually nursed and it was like he gave me one last moment with him. I never knew how much that moment meant to me when, in the midst of such horrible circumstances – I will keep it in my heart forever. He gave me one last chance to bond with him the way we did so many times before. 10/21 Peyton looked so much better that we gave him a bath in the bath tub, he was awake and looking around. It was another special moment that we were able to have with our baby, a moment that I will never forget – it would be his last bath. That night I began to notice his belly getting bigger, he was bloating. 10/22 – 10/25 Consisted of many ups and downs. The main focus was the swelling in his belly. Everyday his belly got bigger and bigger and bigger. I sent Gary to Wal-Mart at 2am to get medications for gas and constipation, I didn’t know if they would work, but I had to try something. I was desperate to make him feel better. In this process there is not one thing that is going to be easy, one thing goes wrong and we are able to fix it. As soon as that problem goes away another one shows up and rears its ugly head. I have never in my life seen so many problems occur, one right after the next. By this time he was so miserable from the pressure in his belly that he was once again in terrible pain. 10/26 – 10/28 These days brought more problems, thrush, diaper rash, dehydration, and his belly was getting bigger every day. I noticed that Peyton no longer was urinating; we had not changed his diaper the entire day. I knew that he had to be catheterized. He was so uncomfortable all day, everything was bothering him and now he couldnt pee. So I found the supplies that I needed, performed the deed, and he had 350mL of urine in his bladder. I almost cried at the thought that he had that much volume sitting in there and putting pressure on his already bloated, constipated, painful belly. I can’t even imagine how badly he must have hurt. Along with all of the other problems he had, this is just one more to add to the pile. Peyton’s little face was so bright, always filled with joy and happiness. His smile went from ear to ear, his little gummers just gleamed in the light as the slobber dripped from his mouth;(anyone would think that this is icky – but it was sweet to me) a beautiful toothless bouncing baby boy. Oh how the times have changed, now the only face he makes is a frown. The frown forced upon his face from all the terrible pain he endures every moment of every day. 10/29 Relief finally came in the form of the atomic poop. This day was filled with poopy blow out after poopy blow out, I would for the first time physically see that a person can actually poop their own weight. Just kidding but there is no way I can tell you, or make you understand how much poop there was. And no, I love pictures, but that would be taking it just a bit too far. 10/30 Now that Peyton had a catheter in, a temporary one, he was making me so nervous. The last thing I want him to have to get is a UTI, from being exposed to severe diarrhea. We were able to start an antibiotic, I know that it probably would not make a difference, but it made me feel better. I am so surprised on this day that our perfect baby is still here with us. I told my husband that there is no way he would make it to Halloween, and he proved me wrong. He is very ill and does not know what is happening, but he made it to October 31st. 10/31 The girls went out Trick-or-Treating and Peyton stayed home, not much happened. This was a calm day. Today was a day of reflection; I sat and held Peyton all day and just thought about everything. Starting November 1st the days really are all filled with medications, treating certain symptoms, making him comfortable, preparing ourselves for what is to come, and taking time to be with him. The end is near, very near. All of the signs of impending death are apparent; he is just fighting so much. I want to ease his pain so much; I want to make it all better. We are in a horrific cycle of fluid overload, dehydration, and Pain. The episodes are coming less frequently, but he stops breathing so many times and the blue color that once quickly dissipated is sticking around longer and longer. The pain is the most difficult part of this all. The nurse tells me that there will come a time when he is very close to passing that he will finally be comfortable. The pain will finally subside. In the end who really knows what is causes the immediate release from life, it is a combination of terrible side effects caused by the cancer. There are so many variables playing out inside of his body. Is it the dehydration, infection, tumors pressing down and growing all over, organ failure, brain trauma, respiratory failure, heart failure, etc… Cancer is a terrible disease! I can’t say it enough. Some days there is not one hour goes by that he has not in pain, it constantly bothers him. It is so hard for me to sit here and watch him in pain, and to hear his moans. The episodes that I have talked about before are no longer such a problem for him, now he has this constant pain. I don’t know which is the worse of two evils, moments of excruciating pain or constant pain? Given that the surgery took his ability to vocalize these little cries that he manages to get out must mean that the pain is unbearable. Sometimes, it seems like no matter how much pain medication I give him, or anxiety medication added into the mix, I cannot make it go away. Of course it won’t go away, but at least I would like to control it. I am just masking it, like putting a band aid over a gashing, gaping, and bleeding wound. It just is not going to work. So I increase and increase and increase his medications; we get to a point where he stops breathing so fast and erratic, and the moans go away, but only for a moment. Then it starts all over again, so I sit up, medication in hand and make sure that I do everything that I can to keep him comfortable. I am in a constant struggle with something that I cannot see, the invisible and silent killer, CANCER. The pain comes and in spurts; for several hours he will have so much pain that I am ready to pack him up and take him to the hospital (not sure if that would even do any good – with all the things that they would do to him. Iv’s monitors, people, tests), then the pain subsides, it will calm down, then it comes back. Everything in this process is a balance, a delicate balance. I can’t give up, I have to keep trying, I have to keep fighting to give him that opportunity to be without pain and to leave this world comfortable. It will reach a point where the pain goes away; I will make sure of it. On the other side of everything there will come a time when there is no pain and no suffering, that time will bring a great deal of sorrow to our family, as well as relief. This cancer is going to break us down so badly that we want to end this, we beg to end this, we wish for our little fighter to give in and let go. The cancer is so terrible that it can actually make you want to let go for the sake of relief. How could we even say that, he is our baby, I feel at war with myself. There is no way around it. I am sure that there are some out there that wonder why I write so much about Peyton’s condition and the pain. I want to tell everyone what really happens; Cancer is not a nice disease. Cancer does not play nice, it does not care who you are, what you look like, how much money you have, if you are young or old, and I want to tell everyone the truth; Cancer is painful and it hurts. It is hurting my little man as you read this. I wish more than anything that I could write about how Peyton slept all day, and is feeling better, and that he is peaceful. Well, that is not the case sometimes. There are times when he is able to get relief, the pain is at bay, and he can rest. Just like there were times that we got to hold, look at, and play with him before everything took a turn for the worst. Today is better, this moment right now on Friday morning he is not in any pain, and we had a pretty good night. Then again I have been giving him pain medications every thirty minutes to an hour, and at large dose. We have it under control for the time being, but that is not to say 20 minutes from now all hell breaks loose and he has to endure another terrible day full of pain and suffering. I don’t want my baby to suffer, but I have to ask the question. If he is in this much pain all of the time, isn’t he really suffering? I feel at times I should be covered from head-to-toe and soaked in tears, but I have not the strength to push one lonely little tear from my eyes. I hate myself because I am not able to cry, I am numb inside. I am numb all over. Have I felt all that I can feel? Or is this just a mechanism of protection because I just might not be able to take any more, not one more thing. Whatever it is at this point I am begging for answers, answers that I will never get. I want nothing more than to have the answers to my questions and to know the reason behind why my baby had to be the one to get “Brain Tumors” or “Cancer.” Then I think what good would that do anyway, he still won’t be here? Why do children have to suffer? This is a time that we should be holding him so close and as he takes his last breaths, and he should have a peaceful goodbye, a painless goodbye. Sometimes it looks like that will not be an option for my sweet baby Peyton. To think that a peaceful goodbye is too much to ask for, it is a shame to think anything less, but look who you are asking. The cancer doesn’t care who it hurts, or what it hurts. But, here we are again at this point of pain and suffering, questions with no answers, and tears that have not yet fallen, but forever will be running down. Maybe I am holding me tears in because once they start from this point on, they will never stop. My entire soul fills with rage as I have to sit and watch my littlest truest love painfully existing and suffering in his last days. This cancer has taken so much from him, and from our family. Little by little everything taken away, until he has nothing left. The time will come when he has nothing left to give, then he will have nothing left to be taken. The peaceful serenity that we all long for so deeply will come, but only at the highest price; the cost of a tiny little innocent life. On that day Peyton will have his peace; peace will come as the last breath of air leaves his body passing through the smallest of lungs and out of the most beautiful of lips. I will hold you so close to me my dear baby boy; as this last moment approaches and as it passes us by, I will hold you closer than one could ever be held. In that last moment you will not be without love; you have never been without love. Use that love, the love that we all have for you, to guide you into a divine place; a heavenly place that knows no pain and no suffering. There in that place, you will have nothing more holding you down. All of the constraints of the physical world will be released. Your disease filled body will no longer be paralyzed; you will be able to move freely with no restrictions. You will be able to wander happily among the ones that love you. There in that place you will grow, learn, and become the person you were meant to be. Your beautiful mind will not be plagued with Cancerous lesions/tumors/growths; you will be liberated as you leave this place. In death you will find a new eternal life filled with love, peace, and happiness. For these last moments I will lovingly hold your perfect body so close to my chest, our hearts will beat in sync, and when your beautiful heart filled with blood we once shared as one, beats its final beat you will have your peace. I know in that moment, in an instant I will feel as if my heart should stop right along with yours. After the constraints of this world leave you and you leave them you will fly up so high, beyond all that is evil, all that is wrong with this world, and become what I have always seen you as; what you have always been to me; a sweet Angel. It will only let me add so many pictures, I will post more from the last month in another folder.
Posted on: Sat, 09 Nov 2013 09:11:56 +0000
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