Lessons Learned

» Posted by on Apr 21, 2012 in Updates | 6 comments

Lessons Learned

Home again, home again. It’s been a long week. Ethan is in excellent spirits despite all his counts being low and having to take antihistamines around the clock. Here are my “take home” lessons (har, har):

  1. It Isn’t Always Gratifying When You Are Right

    A month ago Ethan had a reaction to PEG-asparaginase: nausea, vomiting and fever that we stayed a night in the hospital for. We were told repeatedly that it was not a reaction to PEG. The doctors told me (and my mom) point blank that those were not PEG side effects despite a plethora of documentation that says they are. Our discharge paperwork from that stay said “unidentified gastrointestinal virus”, meaning they wanted to blame it on a virus despite the fact that none of his cultures identified a virus. I knew that he was going to have a reaction this Wednesday when he got his 3rd PEG dose. I thought maybe some kind of skin rash would pop up. I was hoping for vindication… that I could finally say “SEE! I told you so…” I was right but truly I wish I hadn’t been. I would give anything to have saved my son from that experience and I would never have allowed him to have the medication if I knew that anaphylactic shock was the inevitable conclusion. It’s was a hollow victory to have the doctors retrospectively say that he did show some side affects from last month’s dose of PEG.

  2. Being a Cancer Mom Is A High Calling

    This is something I never signed up for or expected when I gave birth to my Ethan. The day he was diagnosed became a mile wide dividing line in the landscape of my life. There are times when I strain to remember what life was like “before”. Worry is my constant companion but on the other hand my faith has never been stronger. I am constantly burdened with decisions but I’ve never been more confident in my intuition. There are a myriad of medical details that require my constant attention but I’ve never felt more focused. I have memorized Ethan’s three and half year treatment plan: every phase, every drug. I’m constantly researching complementary therapies and new research regarding ALL. I go to (almost) every appointment, I examine every lab report, I question every treatment, I watch him go to sleep for every procedure, I double check every dosage before it is given. I know that I am fully engaged in this process. I do this so that I am ready for battle. When Ethan is hesitant to have his port accessed, I’m prepared with a strategy. When the doctor mis-states the next step of his treatment, I correct her without missing a beat. When my son goes to pieces during a drug reaction, I’m strong enough to hold him in my lap while the medical team works frantically to stabilize him. This is not what I would have chosen for my family, but it’s worth it. My beautiful son is worth it. We are stronger for it. Being a cancer mom is a high calling and I’m beginning to see the blessing instead of the curse.

  3. Experienced Hem-Onc Nurses are Heros

    When Ethan went into anaphlactic shock the team at the oncology clinic responded flawlessly. Our nurse for the day was Kirsten (a 20+ year veteran of the clinic). I expressed to her that I was leary about giving him the PEG and was expecting something to happen. I could tell she took my feelings seriously but we both knew we just had to wait and see. She hooked him up and sat down at her desk just steps away. At the first sign of trouble she was there in a heartbeat and did everything needed while remaining cool as a cucumber. Even when they called a code and an extra dozen people showed up she stayed right with us. Also jumping in was Jean, one of Ethan’s favorite nurses. I don’t know where she came from but Jean ended up right by my side; Jean and Kirsten stayed with us all the way up to the PICU. I could tell that both of them were extremely rattled by what was happening but at the same time I felt 100% confident that they knew what to do. When they had Ethan and I on the gurney wheeling us to the PICU I was looking at Jean in bewilderment and she gave me a pointed look and said “Let it out.” I felt this huge bubble of emotion break inside me and I choked out “I was right! I knew it was going to happen!” and Jean said “Good job mama.” Afterwards I got to hug both of them and thank them. They truly are my heros because not only did they know what to do but they really, truly cared about Ethan and me and rode out the insanity with me. I think I might have totally lost my marbles if a bunch of unknown faces had shunted them to the side. So the fact that the emergency team came right up behind them and provided the additional support needed was truly collaborative care at it’s finest.

  4. The SCCA Unit is a Hot Mess

    We spent our first night at Children’s in the pediatric intensive care unit (PICU). They took excellent care of us. Despite being in a shared room,  the room was very large and we had plenty of space and adequate privacy. The staffing was excellent and they ran a very tight ship. We have previously spent the night in the Rehab Unit and the Surgical Unit in private rooms and those were pleasant experiences as well. The Children’s SCCA (Seattle Cancer Care Alliance) Unit is a whole different ball of wax: sloppy, mediocre and ridiculously over crowded. We were in a three-patient shared room: imagine a 20 by 20 foot room housing three patients and six parents, plus the requisite furniture and medical equipment, then add visitors and medical staff. To add insult to injury, even if they have available rooms in another part of the hospital they will not transfer cancer patients out of the unit unless they are forced to because of isolation requirements. To add even further insult to injury is the disparity in accommodations within the SCCA unit: some rooms are enormously huge and only housing one patient while other rooms with less square footage are housing three patients. It is such a vast difference that my son even noticed while we were walking around and asked “how do we get one of the nice rooms?”. Cancer patients should not be sharing inpatient rooms. Period. There is absolutely no excuse for it (and believe me I’ve heard them). Every single patient in the unit is immune compromised and should not be exposed to another family’s germs. It is absolutely ridiculous. I’m frankly shocked that Children’s is rated #8 in the nation for pediatric cancer care. You can have the best team and the most cutting edge treatment in the world but if you are witholding private inpatient rooms from cancer kids, you are courting tragedy and you are willfully increasing stress on the family.  It only takes one person to bring an infection into a shared room which could put every patient at risk. The science supporting single patient rooms is clear. And it’s more than just an infection risk. There is also an increased risk of medication errors. Not to mention the privacy issues and miserable sleeping conditions. I am fully at a loss regarding what to do about the situation. It is exceptionally frustrating.


  1. The first floors to move into the new wing that’s being built are the PICU and the SCCA. All rooms will be private once the expansion opens. I know that doesn’t help you much now but at least it’s being taken care of (eventually). I’m glad you at least had great nurses during this terrifying ordeal. I was at work when his code was called and when I later saw on Facebook what happened I realized that the code must have been Ethan. Prayed for you guys a lot as I went about my work! Glad he’s home and doing well. Keep up the awesome mama instincts…. It saves kids lives (as you know!!!)

  2. Emily, I really admire how strong you have become and how much you fight for Ethan’s wellbeing. I continue to pray for Ethan.

  3. Emily, As I read your post about all you have endured, I commend your courage, faith and overwhelming love for your son.

  4. Emily always go with your instinct. You know your child better than anyone. You are so right to be focused. I am so pround of you. My heart goes out to you. You are
    an amazing wonderful loving Mother. Love and blessings…

  5. You characterized what being a cancer parent is truly about. I couldn’t have said it better myself.

    I remember our Onc team mentioning that if Jack had a reaction to Peg there was a less-than-awesome alternative. Is that what Ethan will receive going forward now?

    I am shocked at what you are describing for the SCCA unit. It must be frustrating to put your child in a situation that you know is less than ideal. Maybe if enough families are vocal about the situation it will change. Hopefully you guys won’t have to spend a lot of time there!

    • The alternative to PEG is erwinia. It is exceptionally expensive (like $100k) and not usually covered by insurance. Fortunately Ethan was only scheduled for two more doses of PEG so we have decided to just let it slide and continue on with the dozen or more other chemo drugs he is tolerating well.

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