Day 31- PAIN
On Thursday Red got his second, and what we truly hope is his last, chemo treatment.
Nolan sat with him the whole day, wearing one of his superhero shirts and checking on 'my little chunkins.' The first drug he got was actually colored red, and the nurses called it 'superman juice.' We all got a kick out of that.
Treatment day was long. 10 hours long. All was fine until the last hour of treatment when Red broke out in a rash and started getting fussy. He settled enough that when the hour ended we were fine going home.
We are hoping that was the last time we ever see chemo again. His team feels so encouraged by his progress they went ahead and pulled his PICC line out! We are thrilled and hopeful with this news.
That night little stinker pulled his ng tube out. His doctor said we were fine to give him a night without the feeding tube to see how he does. So we just enjoyed all that naked face time. The next day we struggled through giving him all his oral medicines that we were used to giving him in his ng tube. It took most of the day to get the medicines in. I didn't realize how much I appreciated that stupid tube until then. But he ate great and seemed like his usual happy self.
As the day progressed he kept acting less and less like himself. His color got pale, he started crying a lot and seemed to be starving even though he was eating more frequently than ever. Once we noticed he was coughing too we got even more concerned and decided to get him looked at. At no point did he run a fever, but our Doctor's words were running through our mind 'with a cancer kid, every little thing can be an emergency.'
So that night we hopped in the car with our pre-packed bags that are always ready for a cancer emergency, and went back to the hospital.
Every step in the hospital was terrifying as all I could see was germs and sickness. I had him completely covered in blankets and hidden. Hidden from anything that I thought could hurt him. We made it back through the ER into the Cancer Center, and began the process of trying to figure out what was wrong with him. He was hysterically crying, and nothing seemed to calm him down. And every time I tried to pick him up he would wince and scream. He was clearly in an awful lot of pain and nothing was helping.
The next several days were non-stop tests, scans, and meetings. And everything seemed to fail. They couldn't get an IV on him as he was too dehydrated, So they had to stick him over and over and over again. Then the ng tube wouldn't go back in which irritated his throat so badly he couldn't swallow for hours. Every little thing kept going wrong, and with each new thing we did to him I just wanted to scream or punch a wall because I couldn't make it stop. And even though I KNOW they were helping him, I just kept seeing his pain. All I wanted was for it all to go away. The stupid cancer. The pain he's been through. The fact that half of his life has been spent in the hospital.
I. HATE. IT.
Each test that came back was fine. Excellent blood counts, negative cultures, great X-rays, etc. etc. etc. And while that was reassuring that he was in fact doing ok, the fact of it was he was still hysterically crying all day and night long. And nobody could figure out what was wrong with him.
Being back in the cancer has been harder emotionally than I could have anticipated. Getting ultrasounds in the same room we first heard there was a tumor. Walking by the PICU where we watched him on a ventilator for almost 3 weeks. Someone told me you can get PTSD from something like this. I believe it.
Today, finally, we feel like we have answers. They believe he's been struggling with withdrawals from his drug wean off of the intubation drugs. They've been adjusted so he's not coming off of them as quickly as before. Because of the withdrawal symptoms he was wanting to only eat for a few minutes at a time so despite the fact that he was literally eating every 15 minutes all day long, he was still managing to be hungry. So we've got him back on an overnight drip feed to help get him some additional calories and make sure he's hydrated. His body is making plenty of white blood cells, partly because one of the drugs he gets helps him to make them. The problem is that when his body is extra white cells it can cause pain in the bone marrow. So, all his bones have been hurting him. On top of all of that is the fact that his tumor is shrinking and that can be painful. So my poor baby has literally been suffering.
I'm completely wiped. I haven't slept more than 2 hours at a time. I almost never put him down, as the minute I do he cries out. Today has been a lot better, but that doesn't mean it still hasn't been very hard.
There is a deep anger within me that I haven't reconciled with. Childhood cancer is just not ok. Watching him suffer. Seeing what he has to be put through just so we can help him is absolute torture. Our little hero, he puts up with so much, and then still smiles at the Doctors. Such a warrior.
But I'm so VERY angry that he has to have this battle at all.
Comments (22)
I hate all of this for you. But all I can think looking at your post is, "look at that sweet little face!!!!!"
I've never met you or your family, in fact I don't even remember how I ended up here. And I've never had a child with cancer. But I have had a five week old little boy who was very, very sick. I have had a newborn intubated for weeks, and have to go through withdrawals. It is not easy. So many sleepless nights and so much pain. His physical and your's emotional and physical. I am so sorry for what he is going through. And my family is praying for yours. My little five week old who suffered terribly and who they said might not live got his driver's license this week. Praying that this too will pass and will become a memory to you of God's faithfulness.
Hang in there. The anger won't help, but it's sometimes the easiest emotion to equip. Kids can sense how you react to things, so keep positive for him. Hopefully, your family can put all of this behind you soon and you'll be telling us how great it is to be at home cancer-free.
Dearest Beri, I'm so sorry that you are having to endure this pain. I'm sure you are aching almost as much as your precious little one. In the midst of all you are going through, anger is healthy. Shout at God (He can take it - He hates cancer even more than we do). Scream. Yell. And use the anger to keep fighting. With love and prayers, Alison
Watts went thorough withdrawal after he was intubated, too. It was horrible. Sorry you guys have had to deal with that-- we continue to pray for Red and your whole fam.
I know ALL of this stinks! But, I also know that Redden is one tough hombre. I voe you all so much, and you are always in my thoughts and prayers.
He is so beautiful. Cancer does suck. In every sense. What Red is enduring sucks sucks sucks. I hate it. We collectively hate it for you. He will get through it and not remember thankfully. Hugs and love of support for you all.
More prayers are coming your way. It must be so hard but Redden is strong and so are all of you. He will make it through this ordeal. He has a loving family by his side.
So sorry, Beri. I know how strong you guys are, especially Red. He's got this and will beat it. Love you all!
Sometimes being angry is the only thing that makes sense. I am angry for you and for him. Cancer is terrible. He is an amazingly spirit that he can smile at all. Im always thinking of you guys, that amazing little boy.
It's just incomprehensible that such a sweet angelic little boy would have to go through this. That last picture makes me melt (as they all do!) Praying that was the last chemo treatment for Redden, for strength and peace for you, and for continued wisdom for the amazing medical team.
As we all are so very ANGRY! No child, no family, no one should have to suffer so!!!but......and there's always a but..... As our moms always told us growing up...life's not fair..... I am so very sorry that little redden( and his whole family) has to suffer so...will continue to pray and send out all good /positive energy your way...praise God the doctors are so intune to what's causing his pain and correcting that....and may he continue to grow and thrive surrounded by his family's love..he is one strong ,resilient , handsome lil munchkin....as are his brothers...as are you two.. Always in so many thoughts...all day, everyday. 💜
Thanks for this update. You know that your family, friends, neighbors, co-workers, and strangers wish that they could take this pain away from Redden, his parents and his family, but all we can do is continue to pray and send you words of encouragement. Indiana prayers are still coming your way. We wish you Love, Peace, Strength and Patience.
ROAR! ARGH! *&^%%&%^%^&*&%$#@!!@! DOUBLE WHAMMY! KA-POW! CANCER - TAKE THAT! Last I heard, Red was kickin' your arse.
Beri, I am so sorry Redden has gone through this suffering, and as he suffers, of course you suffer, too. PTSD is very real. Very. Praying he will continue to do well. I have some thoughts to share about the PTSD if and when you'd like to connect - [email protected]. Continuing to hold you close in my thoughts and prayers. Kristin Connor (CURE)
Beri, i hope you know what a truly amazing person you are and Redden is gong to be strong and wonderful person because of you! Sending much love and prayers to you and your family.
:( I'm so sorry, Beri. My mama's heart hurts with you as I think about your little guy's pain. Truly hoping the worst is behind you all now. Sending light and love to you, and wrapping your little Redden in it so he can rest and heal. <3
Beri, thank you for sharing this gift with us all. Your account of this grueling process is a gift to Red and a gift to the world. We are all so sorry that you are fighting this battle, but your courage is so encouraging at the same time.
Dear Beri, I am praying for you as much as for Redden. Being a nurse for many years and taking care of cancer patients does not teach you anything about what the parents and children go through at home. I am amazed at your strength and strong protective mothering you show us. How beautiful you are as a person and as a mother is an understatement. To write this blog is a blessing. You are letting us know what it's like to have a sick child. We all need to know what people go through to have more compassion for others. I am just so sorry it has to be Redden. I now pray for other families that are dealing with children with cancer, whether I know them or not. Hang in there. I do believe there is a silver lining coming. I am sure you can't wait for that. Love mom xooxoox
We're thinking of you here in California. I'm so sorry you are all experiencing this pain. You're strong. I can feel in it your images and your words. Press on, Irvings - we're cheering for all of you! Sending you peace!
Love you guys. Feeling every bit of that emotion with you...even though I have no clue what it really feels like. Back to my prayers, as His love and mercy is what gets us through the struggle.
Prayers coming to your family from China Grove, NC. We loved the Hancock's when they were here at FUMC. Comfort requested for you all. They baby is so handsome.