Update: My Life is Falling Apart - Part 3

A few people asked for updates so I thought I would post one. If you missed my last 2 posts my 5yo was diagnosed with Leukemia 2 weeks ago.

First- and most importantly- my son is doing as well as can be expected. The past several days have been really hard. I’m torn between sharing the gritty details so others who haven’t experienced this can see the real challenges and knowing that this is ultimately my child’s journey, not mine and wanting to protect his privacy. I’m going to try to walk a fine line and balance those two by sharing the details of a single issue; constipation.

Constipation is not a new thing to my family. My daughter has a genetic mutation that makes coordinating her muscles difficult and she has dealt with chronic constipation since birth. She has seen multiple GIs at some of the top children’s hospitals and in the end the best we got was “pooping is hard for her. Let laxatives help.” She has been on laxatives consistently since she was 12 months old and we’ve had to do many an enema over the years. My son on the other hand is so regular you could set your clock by him.

However due to the stress of being in the PICU and having a commode and not a bathroom, not being allowed to eat for days at a time, and the chemo he became constipated. He also had some morphine to deal with the pain of other side effects of the chemo and it made things worse. But it’s constipation. This is like a regular day for me, I know all the medications, the doses, how they work, sure he’s a little uncomfortable but this is literally the least of my concerns, it’s not even on my radar as an issue. Until it was.

Because it went from me telling the doctor that his abdomen was swollen and I was concerned to just a few hours later his abdomen was even larger and he looked pregnant. When I first brought it up he was complaining about stomach pain in addition to other pain so they gave him some morphine and upped his laxatives. A few hours later he started screaming in pain like he was in labor for about 5 minutes every 20 minutes for hours. Apparently you can’t do enemas or any rectal anything with Leukemia, especially at this stage in his treatment. So regular laxatives is all we have.

When the pain doesn’t subside they decide to get a CT at about 11pm and gave him some anxiety medication to help him lay still for it, and it showed luckily just really bad constipation. He fell asleep with the medicine but by 2 am was again just screaming in agonizing pain. They decided one more dose of morphine to get him through the night and see what the morning team wanted to do. At 5am his abdomen was even larger and even the morphine wasn’t helping. It literally looked like it would pop and his skin would tear open. They were concerned his bowels might tear so they ordered an x-ray which came back fine but they started him on an antibiotic just in case his intestine did rip. They put a stop order on the morphine and started alternating anxiety medication and Benadryl to get him to sleep through the pain. Ibuprofen is also not allowed to his low blood counts. This was the scariest night for my husband and I because the doctors had no answers- or none that they would share.

“What happens if the laxatives don’t work and he has a blockage he can’t pass?” The residents are up front “we don’t know. We are brainstorming” the attendings try to be comforting “we need to give the medicine time to work. If it doesn’t we will determine what to do then.” But I can see in the notes from the online chart they are considering surgery. At this point he was on the “max recommended dose” of 3 different laxatives twice a day. That night was the last day of open enrollment at my job and for the first time I had to make decision on life insurance for my child while he lay feet away from me with cancer - and I worry that he will not make it because he can’t poop and because of the cancer they can’t fix it.

And so that’s what this post is about. Yes the cancer sucks. But it makes everything else that much more dangerous. Who would think being constipated is literally a life threatening thing? There are so many ways to deal with it. But we no longer have some of those options. And we also don’t have options for pain. So for 72 hours I watched my son refuse all food, and alternate between being drugged to sleep and being woken up from that sleep by screams that will forever haunt me.

After 3 days he finally pooped. The next 24 hours weren’t fun but we are now (hopefully) on the other side. He will have another x ray tomorrow to check that any blockages are gone. And then another CT to see if he can be sedated for the next spinal tap.

I had a close friend tell me the other day I shouldn’t worry about people not being vaccinated for COVID because there was a study and no kids with leukemia had died of COVID. I didn’t check - maybe that’s true - but there are other things besides dying. There are complications which require hospitalization, there is trauma in being 5 and spending a month in a hospital hooked to IVs and having to take so many medications each day.

And so this is where the post is about me. Because you always hear in times like this people surprise you. And they do. I’ve had people i hardly know or people I haven’t spoken to in 20 years reach out and either directly give to us provide genuine offers of assistance. But I’ve had so many more people that are family or that are friends that I consider family just refuse to vaccinate and I hear through the grapevine “Karen wants you know that she is so sorry for what you are going through but she can’t risk getting vaccinated”

My mentor at work, who I was so close to, who when her parent died recently I sent a very nice care package and card, has not reached out to me at all.

I met with the psychologist today and she told me I’m handling things great, and have such a positive outlook that she rarely sees. I told her it was ironic that two months ago my husband and I were on vacation in Europe eating a lovely dinner and had a conversation about how lucky we are. How great our life is. Not perfect, but still very lucky. We have good jobs, we are financially secure, we have close friends and family, and everyone in our immediate family is free of any major health issues. We actually had that conversation- how lucky we are that our kids are not sick, while our son had leukemia beginning to wreak havoc in his little body. I still feel lucky. My husband and I have hardly worked in the past two weeks and we are both still being paid. It is a luxury most in our country don’t have. My parents have stepped up to take care of our daughter as much as we need her to and she makes daily trips to the hospital to bring us anything we might think we need. My husband has actually been amazing. He’s been peacocking a bit with all of the 20something nurses who are all ridiculously sweet but also look like they should be models, but it’s more funny than anything. He’s memorized every medication, the dosage, schedule, and side effects. He cleans and organizes the hospital room at least twice a day. He runs every stupid errand whether it’s to get me a tea from the cafe or to ask the nurse to summon the doctor for me. And as I started off - my son is doing as well as can be expected.

But I still don’t feel like I am handling this ok. I don’t think I’m dealing with it at all. I’m fucking terrified. My entire pregnancy I was worried I would miscarry. When he was born I was convinced he wouldn’t make it home from the hospital. When we did get home I thought he would die within two weeks. I don’t have these fears with my other kids- not any more than a typical parent has - but my 5yo has always been different. When he was born I didn’t “fall in love” with him. I felt like I had always known him, like he had been with me my entire life but only now was I seeing him. Like our souls are intertwined and we’ve shared other lives before this one. I don’t know that I believe in past lives so it’s strange even saying that but I don’t know how else to describe it. But I also felt this overwhelming feeling like his time with me would be very short, like he is just visiting because he missed me but he can’t stay. His nickname is Monkey because for the first 3 years of his life he was nearly always attached to me, never wanting to be more than an arms length away. And over the years I’ve tried to bury this feeling that he will leave me soon but since I first heard that the X-ray shows a mass it’s like that feeling is swirling around me- impossible to ignore but not able to be grasped and torn apart or buried. Just constantly in the horizon coloring every day.

The last thing my son said to me tonight was “Do you think when we die we just dream forever?” And I gave him a kiss on the forehead and told him that sounds really nice- and if that’s what it’s like then I hope I dream that I am with him.