Yesterday was a hard day. Our hearts were heavier and sadder than we were prepared for when we woke up. We had our meeting with the oncologist, Dr Agrawal, at Lutheran mid-morning. We had briefly met them during our hospital stay and it was mentioned that the anticipated plan would be a mix of chemo and radiation, using proton radiation specifically to reduce the long term effects for Cade. We were fine with this, expecting this. Well, until this meeting, no one had actually discussed what exactly those “long term effects” were. The meeting started with the fact that St Judes pathology also confirmed that it was medullablastoma and they also were not seeing any sign of aggressive cells (aphasia I believe is the term). This was great. We were praying it would not be an aggressive form. The genetic make up of the tumor was not finalized yet, but it wouldn’t necessarily change anything going forward really, just put it in a category.
Dr Agrawal went on to discuss our treatment options and the big difference being the use of radiation. Cade is in a very gray area as she put it. Radiation is not done for children under the age of 3. Period. Cade will be 3 in August, so once he is 3 we could use that as a treatment form. She went on to say that radiation is not ideal for children under the age of about 6-8 years old. By age 8, your brain is pretty well developed. At age 3 your brain is still under a great amount of development. Radiation is great because it kills medullablastoma cells very nicely. That’s wonderful I thought. Then she continued with the long term effects that it could leave in a child as small as Cade. It would have to blast the entire brain with a heavy amount at the brain stem. Not only would this likely kill of his pituitary gland leaving a lot of endocrine issues (inability to process lipids, likely have thyroid issues) growth issues from radiation to the spinal area, amongst other things…most importantly his cognitive development. She said that it could leave Cade with severe cognitive deficits to the point where he quite possibly could not live on his own. Could likely have a simple job such as a store clerk, grocery baggers type of job, but would have a hard time holding a real job. Likely be unable to attend college. I felt like I was going to vomit. I could hear Chris crying. I saw her push the Kleenex box closer, but I couldn’t do anything but look down through the blur of tears that filled my eyes as I felt them drip down my cheeks. I was frozen. Nauseaus. Numb.
The doctor continued that there was another option. It would be a more aggressive option that would involve only chemotherapy and not use radiation at all. She had consulted with a colleague at Lurie Children’s Hospital in downtown Chicago and shared Cades situation with them. They both concluded that in their opinions, they felt that this option was the best one for Cade to give him the best outcomes and quality of life. It was treatment used for kids under the age of 3, all of which had the aphasia type of medullablastoma and/or didn’t have full resection of their tumors. It will involve 6 cycles of chemo total. Each cycle lasting 3 weeks, meds given the 1st week, recovery of his sweet little body the other 2 weeks. The 1st 3 cycles would involve what they call pheresis at the end of each cycle. This is a procedure in which they will remove some of his blood, separate his white blood cells and harvest them, and then return his red blood cells and platelets to him. They will save the WBC from these 3 harvests. During the last 3 cycles of chemo, when his body is very depleted and his WBC dangerously low, they will take his own WBC that they had harvested and transplant/transfuse those back in to him to give his body a boost and help him to replenish and hopefully begin to reproduce new ones and boost his immune system back up. Depending on his tolerance and side effects or any possible fevers/infections during each cycle, they estimate roughly 4-6 months for the length of this treatment. Due to the need for the pheresis, he will need a bone marrow transplant doctor on his team, which no advocate hospitals can offer. Therefore, they’ll have to refer us to Lurie’s for his treatment. If we chose to go with this treatment option, Lurie’s prefers him to have a different type of line called a Broviac as it allows for 2 access lines in the event that they needed another line for additional medications, hydration, antibiotics, etc. so that they do not have to be sticking him for additional IV access during his treatment. This is different from him having a port like we thought. The port is a little button under the skin. Kids can still bathe, swim, etc. A broviac is a tunneled line outside of the skin and now we are talking dressing changes weekly, it cannot get wet, no swimming, and sponge baths for what will feel like an eternity to this water crazed, water loving boy!!! I was so disappointed when I heard this.
The meeting did not go anything like I think either of us anticipated it to go. I think we both walked out of the hospital in shock. I barley spoke the entire drive home. I was so sad. I got home and balled. How could this be our options. Just two options both one extreme to another. There was no middle option? And maybe there isn’t. But it was awful and scary and I felt lost. Chris and I both agree that radiation is no longer an option in our book. Cade is an incredibly smart little boy for his age. We are told that by people constantly. There is no way I am even going to risk destroying that. I can’t even fathom. The thought made me sick to my stomach and I balled when I tried to tell my family. So our original plan of spinal tap and port placement Monday, and start of treatment Thursday, has been put on hold. We now will be meeting with the doctors at Lurie Children’s on Thursday to discuss this further and decide that this is for sure the route we want to go. Thought at this point, it is our only option. They discussed doing the spinal tap still on Monday and then doing the line at a later date after our meeting at Lurie’s. I canceled this as soon as I learned that they were still going to put him under general anesthesia for the spinal tap, which he would then have to go under again for line placement later that same week or the following. My sweet boy has already been under general anesthesia 3 times in 1 week at the hospital. There was no way I was having him go under it again two more times. My feeling was that the spinal tap results (God forbid they showed anything, I’m praying they WILL NOT!) will not change the course of treatment. If we are already going an aggressive route, that wouldn’t change. So what is the harm in postponing it and still having both done at the same time. I asked for Dr Agrawal to call me back and I discussed this concern with her. She was very understanding and agreed that it would not be any detriment to him to do this. So it was canceled. Now we wait. We wait until Thursday and then we see what transpires from there.
Overall it was a bad day. And I feel like Cade felt our heaviness because yesterday was one of Cades worse days too since we’ve been home. It’s not that we were sobbing around the house or yelling at each other, but I’m pretty sure neither Chris or myself were ourselves yesterday and I think Cade felt that. Kids are smart and they say that they can feel what you feel and know what is going on. That’s why I’ve been a firm believer this entire time that I have to be strong so my baby can be strong. Yesterday I wasn’t though. I was weak and he struggled. I will remember this. He’s been doing amazing since being home and I think his activity also had caught up with him. After a 20 minute tantrum around 4:30, I left to get Rylan from daycare. When I returned, Chris said he was sleeping. They had laid in Cades bed together, and he passed right out. I made the decision to not worry about his medications unless he woke up. Otherwise I intended to let him sleep. And sleep he did. He woke up at 10pm saying his head hurt. I gave him Tylenol and snuck his dose of Zofran in it to hopefully keep him comfortable through the night. He didn’t wake up again until 5am for the same reason. I gave him more Tylenol and he slept for two more hours. He woke up like a different boy today. He was still crabby frequently, but he has been. But he was active, happy, eating and drinking better than the day before, and did not vomit. We went on an adventure today too. He needed to get out of the house. We walked Henry around the block, and then we took a family trip to the splash pad in Crystal Lake. He wasn’t running through the sprinklers, but he enjoyed the swing for a while, and walked for a couple minutes in the sprinklers. After about an hour or so he wanted to go home. It was good for him though. Good to get out of the house. To feel like a normal kid.
Chris and I didn’t talk about anything today. We just had a day as a normal family, the best we could. I think because we already knew how the other felt about the options. We have the one option, and we will get through it. Cade is strong. We are strong. God is amazing. He is with us. We will get through. Last night I didn’t feel this. Not that I didn’t believe it, but I just felt empty. Unsure. Feeling like I hadn’t felt God with me lately. While Cade slept, we all sat down for dinner. As Ry was walking to the table I could hear him singing to himself. “The Kingdom is alive…we’re stepping on the gas” As he repeated these lyrics a couple times softly to himself I said “what are you singing over there…I recognize that song…” and I smiled at him. He climbed up to the table and smiled at me and said the name of the song. Which I knew. It was a song called This Is Not A Test, by Toby Mac. I smiled at him and said to him, Ry- I think you’re my sign tonight. I went to bed last night and prayed and cried. Cried as I prayed.
I woke up today (Thursday) feeling better. Today was a good day. Today I feel my day was filled with signs. Small ones, given to me in the form of friendships. Reminders of how many people love and support us. My mother who stopped by on her way to work just to hug me because she couldn’t hug me yesterday. A quote shared with me by a sweet friend who was thinking of me that said “We don’t have to understand the ‘why’ of God’s ways. But we do have to keep choosing to follow Him.” My sister who text me to say that while she never talks about Cade to her clients because she will start crying, she did today and her client happened to be a photographer who wants to do a photo shoot for us at no cost before he starts his chemo. A friend that Chris grew up with who called him out of the blue while we were at the park to let him know that they do an annual fundraising event and donate all the money to Lurie Children’s, but that this year, on August 5th, they will be doing their fundraising event and donating their proceeds to us. To Cade. An acquaintance I had met just days before the worst night of our lives, who happened to be at the sprinkler park. She is the mother of a girl who was on Ry’s soccer team, when she said hi, she saw Cades scar and shockingly asked what happened. We cried together as I told her the story and she hugged me. She sent me her phone number and we both laughed through our tears saying what were the odds that we both live in Johnsburg, and of all places we each could have gone He sent us both here today to the same splash pad; to start a friendship. Finally ending with an amazing friend who took me out to a delicious sushi dinner and we talked and laughed and decided to call it a night before the tears came. Today I definitely felt God with me, smiling as he sent us all these little things to lift our spirits and warm our hearts and remind us that we are not alone.
Our Warrior Journey 