heinz family

A Mother’s dilemma
Or
“It was easier when I didn’t understand what was going on”

What a day. Yesterday was one of those really tuff days to be a mom. Have you ever really wanted to be in two places at one time, having two children really need you (and they’re in two different cities!)? That was my day yesterday.

After talking to Nat Seldon on Monday, it was obvious he was concerned about Alice’s numb spells continuing and the huge headache. He set everything up for us to go up there Tuesday. He set up an MRI at 11:00 and then we were to go to his clinic and he’d be in surgery but we were to let them know when we were done and he’d “slip away” and see us. That was the plan, Portland on Tuesday.

Tuesday morning arrives and at 6:30 when Evelyn is getting up for school, she says she doesn’t feel good and is an ugly shade of gray/green. Shortly after that she begins vomiting. Now her best friend Laura was at our house over the weekend and woke up Saturday morning puking so this didn’t shock me, but the timing was terrible. I had to go to Portland with Alice; it really wasn’t something I could reschedule. I called a few friends and asked them to check in on her and Evelyn seemed so mature and understanding. At that time I also thought, well, 11:00 MRI, done with scan by 12:00, see Seldon, out by 2:00 home by 3:30 … not good to be away but if I had people checking in, it would work out. Well the day did not go like that.

We got to Portland and the MRI folks were running a little behind. I called home to Evelyn and she's not feeling well at all; vomiting lots. I assured her we’d be home ASAP and that Julie would be checking in on her soon (thank you so Julie!). We got in, did the hour scan and just as we were leaving, they called us back and said the radiologist wanted a few more views. More MRI. We then went to Seldon’s office. We get there and the receptionist is “expecting us” and says she was told to page Seldon as soon as we arrived. I guess it’s good to be expected but … then again. So while we were waiting for Seldon, I called back home. Evelyn is quietly sobbing, “I need you mommy. I don’t want to be home alone. I’ve been vomiting and vomiting.” What’s a mother to do?? I’m in Portland at Doernbecher Children’s Hospital waiting to speak to an obviously concerned neurosurgeon 1 month after my one child has had brain surgery for an ugly brain eating tumor and my other angel is at home puking her guts out wanting her momma. I make a few more pathetic phone calls to friends making sure someone will help mother my daughter at home (thank you Karen!) and off we go to talk to Seldon.

It appears Alice had a bleed into her brain. The questions was, was it resent, or current. Was she actively bleeding? We sat in this exam room looking at her MRI scan on the computer, comparing her post-op MRI (taken 2 days after surgery) and today’s MRI. There had been some blood at the post op scan (expected), but there was obviously more. To my untrained eye, it looked huge! Obviously there had been changes – changed from her CT scan two weeks ago also. So they felt that explained her headache on Saturday. It seemed obvious Saturday that something big was going on, but she recovered so well. The question now was, is she still actively bleeding? The other question in my mind, could this be tumor growth. They seem quite clear the big issue is the bleed and that there is no way to evaluate the tumor at this time. Generally speaking, Seldon says, they never do MRI’s one month after tumor resection surgery because you can’t tell what is what. They’re looking at the bleeding issue strictly. So we’re in this room looking at these scans with Seldon and Sue (the nurse-practitioner) and Seldon is on the phone talking to the radiologist. The radiologist says he thinks its “fresh” and she still may be bleeding. That’s not good. Seldon is concerned (he’s not a man of many words, but he is incredibly frank and to the point). He doesn’t like that particular radiologist (“he’s not going to be working her much longer. I don’t absolutely trust his judgment”) and wants a second opinion. He calls his “favorite” neuro-radiologist for a second opinion. We wait. Seldon starts asking when his last case is in the OR today and when Alice last ate. We’re getting nervous. He’s talking about “going back in and taking a look”. Yikes! The second radiologist calls. He says, “Can’t be sure”. It’s substantially bigger, could be active. Seldon is saying “I don’t want to go back in there and cause more trauma if it’s not active.” I totally support that decision. So he asks the radiologist, what’s your feeling. He says, she’s had an event, but I can’t be sure it’s not current. Let’s do a CT scan and evaluate that. Apparently sometimes you just need another type of scan for another type of view. So they order a stat CT (it’s now 4:00).

Somewhere in the middle of all this, I’m calling Evelyn and she’s worse than ever, vomiting “everything” and “just wanting her mommy.” I’m thinking, I’ve got a kid at home vomiting her guts out, wanting me, and another who might be going back into surgery. There is only one phrase that fits this moment in time. This all sucks!!

So Alice and I are off to CT. As we’re walking down the halls (and we have now been on every floor in Doernbecher) Alice says to me, “You know, it was easier when I didn’t understand what was going on. Now I’m scared!” And it is true. Gone are the days when I would just say, “we’re just going for another test honey” and I did all the worrying. She has always been very aware and wise about all this beyond her years, but now! Now she has a wisdom and understanding that is so different. Now she is such an active participant and decision maker in her care. She then said, “actually, I think I prefer really understanding, it’s just I worry more, and that’s hard”. And it is hard. But it is her life and she is so aware and involved … for better or worse.

So we go off to CT, do the scan and go back to Seldon’s office. They page him and we wait. Seems like such a long wait. I call home. Evelyn’s no longer alone, but still wanting me.

Then the final verdict. After looking at the MRI’s and CT scans they decide that the event is over and he doesn’t need to “go in”. Yahoo! The decision seems to be unanimous and many people have looked at the scans. So we’re to let them know about any more significant headaches and document when and for how long her hand goes numb. Oh yah, that happened somewhere in there too. We talked to some pediatric neurologist and he said there was no point in doing an EEG (brain wave scan to check for seizure activity) at this point as with all the inflammation and bleeding the EG might be abnormal and difficult to interpret, and it may all resolve as the inflammation diminishes, so he wants us to just keep good track of frequency and duration and if they continue then he’d see her and test her. And Sedlon says, unless she does anything else weird, we’ll see him in 6 weeks in brain tumor clinic with Stacy for another MRI. He then gives us the “you know, this was big surgery. I removed a large very aggressive tumor. There are going to be some side effects. Just because she looks so good and has recovered so wonderfully, don’t underestimate the trauma that occurred.” Good words to remember, because she does look so great and is back to wanting to be “normal”, but it was a huge trauma. It is so amazing how well she has done.

And as for Evelyn, I don’t think she was ever happier to see her momma. We got home about 7:30 and she was still vomiting. She had a tuff night, fever, cramping and vomiting and I slept with her. (She told me, “I don’t know what I’d do without you mommy”; this from my big growing up teenage daughter.) I don’t think she’s ever been so sick actually, but while she “feels like she’s going to die”, this morning she’s sleeping on and offand she hasn’t vomited in about 4 hours so I’m hopeful she’ll be feeling better relatively soon (though now she has a fever). I’m home with her today. Julie and Karen, as one momma to another, thank you from the bottom of my heart. It’s a mother’s ultimate heartbreak, when you can’t be in two places at once and taking care of both of your children who need you so much.

That’s my story for today.
Thanks for listening.
And,
Yahoo, we didn’t need to cut open Alice’s head again!!!

Love and peace,
Susan