Cancer Hurts

Everyone sees the cancer child. Those bald heads and brave smiles are so beautiful, adorable, brave, heartbreaking and inspiring. To those of us in the Cancer World, we see the determination and the pain that is behind those cute pictures. We see the hundreds of procedures, the hours of fighting nausea, the pokes and prods, the tests, the fatigue. Those not in our world see and say "Awww, what a sweet little child, he/she is so brave!" and they go on with their lives thinking.... "That will never be MY child."

Today I am going to open my heart and gut and pour out some of the pain that is buried inside. Cancer pain. I am not the one hurting and having poison poured into my veins.. having shots every night that HURT and make my bones ache. I am not the one that can not eat because every thing tastes like rusted metal, or because I know that if I put it in my mouth, I will be spewing it out very soon. I am not the one that has to take handfuls of meds every single day, nor have my temperature taken over and over and over because fever means a trip to the ER and yet another hospital stay. I am not the one that can not go out to play, or to the store, or to Chuckie Cheese, or ANYWHERE because my blood counts are too low. I am not the one that cries because, once again, my hair falls out and I look "different", that has no energy to walk even through the house without having to stop and rest. I am not the one that has to sleep 20 hours of the day, that can barely sit up some days, that has to be rushed to the hospital to have blood transfusions to help give me some strength back. I am not the one........

But.... I am the one that watches and sees and is there 24 hours a day to witness just how hard this Cancer stuff is. I am the CAREGIVER.

I hold the tiny hand and rub the back of the warrior having poison pumped into his veins. I watch him go from playing to drooping and watch as the nausea starts to roll in, I grab the barf bag and hold it for him as he wretches again and again.
I am the one that has to give him those horrible shots every night. I am the one that he begs and pleads and cries to to NOT give him those shots. I am the one that goes into the other room after those shots and cries and aches because I have to do it.
I am the one that tries, every day, to find SOMETHING that will taste good, something that he will eat and enjoy. I make trips across town to buy him something that he wants, just to get home and find out that he can't eat that, either. I am the one that nags and pesters and says "Take a bite... take a drink" over and over and over until I feel like I am a broken record.
I am the one that doles out those handfuls of pills every day. I have to keep them straight... what time to give them, what days to give them, wake him up to give them if they are around the clock meds. I have to clean his port access and give him intraveinous drugs... sometimes while I am so sleepy that I can barely have a sane thought in my head.
I am the one taking those temperatures so often, feeling his head constantly to see if he is warm, throwing things into an overnight bag in a hurry because there has been a fever and we have to go NOW.
I am the one that rubs his legs night after night because his bones just plain hurt. My hands ache from rubbing and rubbing for hours... but that is the only thing that seems to help him rest.
I am the one that struggles with watching the other kids outside playing and then turning to see him laying on the couch with his IPad... I see the sadness and the boredom. I try to find things to entertain him, to stimulate him...but I so often fail him in that. I stay home with him and long to be somewhere... anywhere but here. And then I feel guilty for feeling that.
I am the one that drives through the blizzard time and time again to rush him to the hospital.. or to take him to have chemo, or radiation.
I am the one that sleeps on those horrible couch/cots at the hospital for nights on end, and wish I was home in my own bed.
I am the one that stands in the shower at any time of the day or night... because the shower is my safe haven where I can go and cry and sob and yell at God that all of this is NOT FAIR.
I am the one that, on top of all of the stuff I have spewed out, has to fix dinner, do the dishes, laundry, etc. and find the time and the strength to still be a mom (grandma) and take care of the rest of the family, too.

CANCER HURTS!!!! It hurts entire families, not just the cancer kid. It hurts the siblings that get to watch their brother fight and not understand why. It hurts to not be able to play with them, or to have them gone so often, or to have mom and dad spend so much time and energy on them and not have a lot of energy left to take care of the sibling.
It hurts the bread winners... the ones that HAVE to go to their jobs every day...even though their hearts are not with it, they want to be home taking care of the cancer child, too.

Please.... when you pray for that cancer child..... pray for the ones that hurt that you do not see. Sometimes it is only in the prayers for ME that I can get through one more day.

If you sincerely want to help someone fight the fight... Don't just say, "Let me know how I can help you". They will never tell you. Take them a meal, text them to tell them you love them, take them to lunch. The person that is fighting so hard behind the scenes has no idea how you can help them. They are in survival mode... just get through the day mode.... But, they will be so grateful that you thought enough to DO something... they just don't know how to tell you what it is they need.

I am not strong, like my cancer kid. I do not go into this battle with a smile on my face. I whine, I complain, I am weak. I yell at God. I HURT. But, I will go on. Just be prepared for tears at odd times. I have God beside me... in me.... and with me. And I have all of you reading this on my side. This fight is not about ME... even though I wrote this blog today. It is about RYAN.
Thank you, ALL, for your love and support and prayers. They truly are what get me through my day.

Reality hits

I have been in a state of denial about this whole relapse with Ryan. I knew in my head that it is real, and that we are facing "hell on earth" again... but my heart just had not accepted the reality of it all.

Yesterday, as I was driving to Primary Children's Hospital, the song BLESSINGS came on K-Love radio (The only station Ryan will listen too!) When we finished our fight last time around, I made a slide show with some pictures of our fight and that was the music I chose to play in the show. It spoke to my heart that our blessings truly do come from heartache. When the song started playing, I felt as though my stomach had been punched and I started crying. My heart finally knew that this was all real again.

Ryan is such a little trooper. He was in great spirits all day... talking and laughing with the drs and nurses. We visited with his oncology doctors and found out the plan of action we will take.

He will begin chemo as an out-patient, meaning we will go to the Oncology clinic every day to receive his chemo and IV fluids, then we will go home. There will be five days chemo, and two week break, so every 21 days we will begin another round. We were told that his bone marrow is tired from so much chemo last time around, and that it never fully recovers.... so his "rebound" time will take longer and longer as we go on. The 21 day cycle is ideal, but if his blood counts drop, that 21 days will become longer and longer. We will be on this fight for nine months to a year.

Already, we are receiving Blessings in our renewed tears and pain. There are so many GOOD people in this world.  We have an army of beautiful people that are showering us with love and prayers... and there are some really great things being planned to help Ryan and our family get through this. I will be posting more about those things as they happen... for now I can say... HOPE is such a powerful emotion.  Anticipation and fun activities to look forward to bring us hope and strength. For a little while, we can focus on fun and family and not the BEAST. God is truly blessing us with many angels here on earth.

Count your blessings, friends. Find joy in the mundane, every day minutes that make up our lives. God blesses us with so many things, if we just take the time to see them... sunrises, sunsets, butterflies and blue jays, snowflakes and frost patterns, babies smiles and the stories that our elderly people want to share. Love someone, and help someone that needs what only you can do. And hug your kids. You never know when YOUR smile may be the blessing God has for another person today.

If you would like to view the slideshow of our first fight, go here..... http://www.smilebox.com/playBlog/4e4449774e7a45344d6a4d3d0d0a&blogview=true

Second Verse.... Same as the First

SECOND VERSE.... SAME AS THE FIRST

There is an old children's song that goes like this....

This is the song that never ends... It goes on and on, my friends..... Someone started singing it not knowing what it was.... and they'll continue singing it forever, just because...  (and repeat over and over)

As most of you know, Ryan has relapsed. A small tumor taken from his right lung is Ewings Sarcoma.  We feel as though we have been thrown head first into that children's tune, and that this nightmare journey we started on Nov 6, 2012 will never end.

Ryan had the lung resection surgery on Wednesday, Jan 21, 2015 and came home the following night. We did not tell him of his cancer recurrence until we were at  home with his family all together. I will never forget the look in his eyes the moment we told him that we are in the fight again. He had a flash of terror, and then despair. His eyes pooled with tears that were just to much to shed, and his lip started quivering. After a few deep breaths, he said with all the conviction his little body could muster... "WE WILL KICK CANCERS BUTT.... TO PLUTO!!!"

Our boy is AMAZING. and STRONG. The news of the relapse brought me to my knees, took the air from my lungs, and had me in a literal tail spin. All it took was those few words from our true warrior to bring the entire family into FIGHT mode. We are in the battle again... and ready to fight.

Thursday we will return to Primary Children's Hospital to have a port placed in Ryan's chest. And we will meet with his oncology team to discuss our plan of action. I know he can not have the same chemotherapy as he did before, and that is the only proven protocol that is known to kill Ewings. There are other chemos, and we will be trying them... but they do not have the track record of the protocol he was on before.  On Monday, Feb 2, he will begin his new treatment.

Statistics show that recurring Ewings, especially in the lungs, is very hard to fight. But statistics are just numbers. Warriors do not give up... Ryan has not given up.... our family is not giving up. I hope Ewings Sarcoma wants to travel in space... because that is exactly where Ryan is sending it!

Thank you all for being with us through our first "verse', and thank you for joining us in this second verse.  We are praying that it will be "same as the first" and that the outcome will be NED once again.  We can not do this without the support of the thousands of you that love our boy, and pray for him. You will never know what you have done for us.

With God, and you all on our side, WE WILL KICK CANCERS BUTT TO PLUTO!!