When you have a child with a chronic illness, you have to go through the steps of grief emotionally to handle the disease. But once you go through those and get through the initial emergency period, you can get complacent during long stretches of generally good health where the “chronic” doesn’t rear its ugly head. Well, I did. We’ve had a loooong stretch of generally good health for our daughter, despite the liver damage and enlarged spleen. And with that generally good health comes random long stretches between doctor visits and few disturbing moments. Just stability and complete lack of medical intervention.
But two weeks ago we were tossed back into the land of chronic illness at our daughter’s annual oncology appointment and I realized that you have those steps of grief nearly every time a doctor says something scary to you. Not every visit, mind you, but every visit where *something* changes for the worse. Where *something* is happening and you don’t know what and you don’t know how bad it is, and you can guess, but that leaves worst case scenario running through your head.
There are surprisingly a LOT of these visits with the doctor throughout treatment of a long term or chronic illness. You’d think that you go through the stages of grief only when you get the diagnosis and have to face up to what is coming. But that’s not true. Because throughout the chronic illness process you find that you can land on somewhat stable ground DURING the chronic illness treatment. Stable ground where you think “Okay, that was as bad as it can get and we are better than that, so this is good.” And then that ground is yanked from under you. In our case, we’ve had a number of “stable ground” moments.
The first was “she’s not actively dying from liver failure.” That bit of ground was found after the initial listing for a liver transplant before they diagnosed why her liver was failing (cancer called langerhans cell histiocytosis) and had sort of stabilized her for the wait for a new liver. This stability was gone the second they gave us the cancer diagnosis and yanked her from the liver transplant list so fast my head nearly spun off my neck. They won’t transplant a child with an “active malignancy,” though at the time LCH wasn’t even considered to be a cancer. Don’t start me on this. No one wants to hear this particular rant.
The second one came with remission from the cancer. You think “It’s gone” just to be hit with a couple of massive GI bleeds and horribly low blood counts from the liver damage and damage to the bone marrow from the chemo. You go from “YAY! She’s SAVED!” to “OH MY GOD SHE’S ACTIVELY DYING IN MY ARMS!” That was whiplash.
Then they stabilized the GI bleeds over a year of endoscopies and you think “It can’t get worse than her bleeding out in front of me” and stability kicks in. This stable ground took me over a year to get used to after they stopped the bleeds. Watching your child vomit blood and nearly pass out in front of you before they whisked her away on a helicopter WITHOUT YOU will do that. Leaves you feeling like you can’t trust that she’s okay. It took me YEARS to think she was okay. Then finally I realized she was stable. Then she was getting better. Then maybe her liver was recovering. Then maybe she wouldn’t need that liver transplant ever. Then maybe she’d have a normal adult life.
Two weeks ago: ~RUG YANK~
Annual appointment with the oncologist. Her platelets have hit the floor. Her spleen is LARGER. Like a LOT LARGER. So her portal hypertension is worse. Short explanation: her liver might not be keeping up with her growth. So she might need that liver transplant, and sooner than they told us. They said “we’ll find out during puberty.”
This is not puberty.
But here we are, scheduled for an ultrasound, another meeting with the liver team in less than two weeks, and probably another endoscopy to make sure she doesn’t have another massive GI bleed.
Two weeks ago, because of this most recent yank, I went through a rapid burn through of the stages of grief. Because apparently my mind is so used to grieving for what my child SHOULD have and what she has to deal with that it now has a speedy method for grief. Way to go brain! This is it in the shortened version:
- Calm, weird detached explanation and logic. This lasted two, maybe three hours… I completely bypassed denial because at this point, there’s no denying it. I can’t deny the shit that’s been burning a hole in my child for 8 years. But this weird logic thing? This was when I heard the oncologist explain how low her platelets are and how much bigger her spleen is compared to where it used to be. He, being an oncologist, tried to go to possible causes that he understood. He said “Well, LCH (the cancer she had) could get into the bone marrow and affect her platelets…” I answered with a “But that doesn’t explain her spleen. And bone marrow involvement includes fevers, other cells being affected, anemia, lots of other stuff.” And he agreed, saying he didn’t think the cancer was back. Then, calm as possible, as if floating in another body or something, my brain, aloud, worked through it all. “Her spleen being larger could be what’s happening to her platelets. An enlarged spleen will ‘eat’ platelets, so that would explain that, but what explains the spleen getting bigger? It could be an infection, but she’s had none that we know of. It would have to be a serious infection to cause that kind of enlargement. OR it could be her liver is unable to keep up with her growth and her portal vein is just that screwed up from the damage and so her portal hypertension is getting worse, so she will actually eventually need a liver transplant.” I said all this as if I was reading off a menu at a restaurant. The doctor and the PA both just stared at me like I’d grown a second head. I’ve had 8 years of research into liver damage and LCH and bone marrow and bile ducts and spleen and the intestinal tract. I know my stuff. AND I’m pretty sure they were just stunned at how matter of fact I was. Because, weirdly, I was.
- Panic. As in OMG OMG OMG OMG OMG OMG OMG OMGO MGOMG OMGOMGOMGOMGOMGOMGOMGOMGOMGOMGOMG… I CAN’T BREATHE!!!! It hit hard. As we were leaving the hospital and Sophie was asking me about the liver transplant, and I explained to her that we’d have to rule out a bunch of stuff and that was worst case scenario and it was more than likely something else, and even if she did need a transplant, she’d still be okay because we were in the right place for good treatment. I asked if she was scared, and she said no. Then we got in the car and I called my mom. Trying to hold it together. On the three hour drive back, Sophie sat in the back seat watching Clash of the Titans, and I sat in the front seat and cried silent tears and shook as my brain went from possibility to possibility. The last time her liver was in bad shape and her portal hypertension got bad, Sophie had two massive GI bleeds. One so bad it warranted a helicopter flight to a hospital two hours away for an endoscopy to stop the bleeding. The other an ambulance ride to the same hospital for an endoscopy the next day. She gets varices (enlarged blood vessels) in her esophagus from the portal hypertension, and the walls of those varices wear down from stomach acid to the point of bleeding. You can die from those bleeds. Children die from that. And the panic at the thought of Sophie going through that again… I can’t even explain it to you. It’s not even a fear of the liver transplant. It’s the bleeds that would WARRANT the liver transplant that terrify me. I tried to stop and write it down to help calm myself at one point during the ride, and I did and it worked out well, the calming part at least, but I’m not likely to publish those crazy thoughts. It suffices to say that a couple of hours of a panic attack do bad things to you. This panic continued into the next two days.
- Denial. This is where the denial kicked in. Okay, so maybe it is possible to deny it after 8 years, but Damn did I need to think it wasn’t happening. I spent the second day after the doctor visit seriously convincing myself that the enlarged spleen could be just a blip and that the platelets would rebound in a week and we’d be cool and it wouldn’t be a worsening of the condition.
- Anger, vivid, lush, hate-filled anger. This was three days later. I wanted to kill something. I wanted to kill LCH and liver damage and I wanted to HIT a doctor. This was a bad time for the GI doctors office to call to schedule an appointment for Sophie, but this was when they did it. And they tried to schedule me with a doctor I haven’t gotten along with that has a history of not listening to a word I say. So I kinda let it out. That poor receptionist. She didn’t deserve me. I did apologize and try to explain that I was angry and scared and she got it… but holy SHIT I was mad.
- Discussion (negotiation??) with other moms about what it could mean. I started this with hoping someone would back me up on my denial stance. It didn’t work. One mom mentioned that the spleen could be testy, but really… we all know what I was talking about in the liver mom support group, and most of them were talking me through how the team would likely monitor the situation and list her for a transplant before it became dangerous and how it was fortunate we caught it now and blah blah blah blah… I was negotiated into a corner. And that’s what landed me at
- Well F**k it… fine then. Bad@$$ mom mode. I think the official term for this is “acceptance,” but I refuse to accept that my baby is going to have to fight this again. That $hi+’s not going to happen to her again, and if I have string up every MD between here and Panama, they are going to get in front of this and make the road easier on her this time than it was last time. I hit this one two days ago. I accept what it means if it is indeed what it looks like. I get it, but I don’t have to let it happen the same way. And I’m NOT okay with it because a mom can’t be okay with her baby being sick and needing a new liver. Dan and I have talked it all through and we know what it means for our family long term too.
We had a scare today with Sophie’s teacher calling me because her stomach hurt so bad she was crying. I RUSHED down there thinking “don’t be a bleed, don’t be a bleed, don’t be a bleed” and get her to the pediatrician who looks at my sickly, feeling yucky kid, orders labs run STAT, and then I take her home and wait. It wasn’t a bleed. The pediatrician thinks the spleen is just pushing on her organs and that could cause her pain from time to time. BUT the labs were very revealing in that they a) showed no bleed (hemoglobin and hematocrit are normal) and b) were nearly identical to those taken two weeks ago. So it’s not a blip on the screen. This is real. This.Is.Not.A.Drill. And I accept that and we have a fight in front of us.
And like everything else my bad@$$ Empress has attacked in her life, she will straighten her crown, nail this to the wall and make it her little B**ch. And I’m going to be that proud momma as she does so.
So for those of you out there with friends who have a kid with a chronic illness, please recognize that the high drama moments keep coming. That the grief keeps burning through us. And we keep having to deal with these emotions and these reactions. Because this is a process. It’s not just “diagnosis… deal with it… move on.” This is a LONG thing for us.
Please understand. And if we are dealing with something like this, give us a little room. And a hug. And chocolate and coffee and another hug.