A Little Rain

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Chemo, the double-headed dragon, continues to both protect and punish our little girl.  Lulu’s been sick more often and severely as of recent, vomiting and experiencing periodic, but intense pain in various parts of her body.  We assume it is the accumulation of toxicity caused by over 2 years of prolonged chemotherapy.  I mean, there must be a limit to how much a little 43 pound-er can process, right?

It’s difficult to take on many levels since we’ve been living in (relative) blissful denial over the last few months.  We try to live our lives ‘as if’ there is no cancer … giving the kids and ourselves as much normalcy as possible.  However, an unexpected and traumatizing trip to ER can snap one back to reality in an instant.

The fever came on at about 1 a.m., fast and furious.  It started at 101.5, and quickly jumped to over 103 accompanied by a throbbing headache.  I took Lulu to ER at Children’s and Jimmy stayed home so Max could sleep.  I wish I could tell you it was a quick and easy visit, but it was far to the contrary…  As we checked in, she was shivering and crying, very uncomfortable from the fever.  The first two nurses came in to access her port (appliance that is installed beneath the skin that connects to a vein for administering medication and drawing blood).  ER isn’t very familiar with ports, and Lulu’s is especially tiny and challenging.  After the first nurse poked her twice and failed, I insisted we get someone else.  The second nurse came in and I tried to stay calm for Lulu who was now reaching hysteria, so that she would still have faith in the caregivers.  Two more pokes with the one-inch spike and no luck.  This is unprecedented.  Lulu is now completely losing it, screaming through tears at the top of her lungs “THIS PLACE IS EEEEVVVIIIIIIL!!!!  IT”S EEEEVVVIIIILL!!!!!” begging and pleading with me to take her home.  This almost struck me funny, seeming like something out of the Exorcist.  We don’t use the word evil around the house regularly, and it seemed out of character for her to use it. I firmly asked the nurse to get someone form the H.O.T. unit, and ask for our friend Sal if he’s working.  He was.  I was relieved, but I also knew that H.O.T. doesn’t do a TON of ports either.  Clinic is where the expert ‘pokers’ are, and they only work 9-5.  I knew Sal would at least calm Lulu down, which he did the moment he entered the room.  He and his teacher wife actually babysat for our kids over the summer, and he had been our first night nurse ever.  To say we have a special relationship with him is an understatement.

Unfortunately, he too was unsuccessful.  I later learned from his wife that he had frozen after Lulu winced.  He had come to feel differently about this little girl than other patients and that touches us deeply.  The next nurse that came in for the 6th or 7th poke and seemed to have gotten it in securely, but it wasn’t drawing.  It seemed it was now plugged on top of everything else.  At least the damned thing was in and Lulu could stop being a human pincushion!  Now we would have to wait for the TPN (think liquid Drano for ports) to work its magic.  Sal hung out with us for a little while longer and Lulu really calmed down.  He left and Lulu vomited 5 times.  Ugh.

It was nearing 5 a.m. and after two rounds of TPN, the port finally drew and they could get Lu’s blood counts.  We had to be sure she had enough white blood cells to mount an immune response to the flu, a danger for these kids.  Her counts were high, which was a good sign.  Jimmy and Max arrived at 6 a.m. so I could leave for a job an hour away.  I hadn’t had time to get a replacement, and frankly needed this job since I had been taking time off more regularly to be with the kids.  Lulu’s fever dropped after finally getting Tylenol.  She was stable, calm and sleeping at last.

They all had a long next day as Lulu was transferred to the MACC Clinic where she was administered IV chemo and had to endure the dreaded nose swabs to test for flu.  These are very painful and scary for her, but apparently big brother was a rock-star, comforting her throughout, hugging her through the pain and making her laugh in between events.  He didn’t even complain a bit about the 5a.m. wakeup to go to the hospital.  We are so proud of him.  Now, how can we get him to change the litter box without complaining?!?

She was released the next afternoon with Tamiflu and other meds.  She seemed to bounce back so quickly!  But then the fever rose to 104.1.  Ugh.  We were told we could give her Tylenol for 24 hours, so we stayed on top of that and the fever broke again. This went on for another day and finally finished its course.

She’s continues to be up and down from the effects of the chemo.  When she’s up, you’d never know she wasn’t like every other kid in the world and then some; an amazing creative force.  When she’s down, it scares the hell out of me and is not a gentle reminder of what’s continuing to be present in our lives.  Seeing her in pain and lethargic is … well, you can imagine.  She has been taking oxycodone (you read that right) and anti-nausea medications to help combat these effects.  We can’t give her anything that might mask a fever like Advil or Tylenol.

But, we know we are still the lucky ones.  During this new holiday season, we know far too many families who no longer have their little ones to eat turkey dinner with, to decorate the tree with, to buy gifts for … and still more who are in the hospital enduring their own treatments.  So, I continue to write to you all, about the good the bad and the fuggly of cancer, to raise awareness and hope that this holiday season you might think of one of those kids as your own, and donate in your own way your time, energy or money to help fight this disease.

Love,

A.L.L. of US

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21 Comments

  1. carol curley

     /  December 1, 2013

    She’s so strong. You all are. i wish I could make it all go away. xo

    Reply
  2. Thank you for writing this….we lost our precious Cory Batz on July 31, 2012 to t-cell lymphoma and I just wish we could wipe cancer off the face of the planet. The kids endure so much and much braver, than ever I could be…With guidance from God above, we are giving back to Children’s with Cory’s Project. Wanting to help lift the spirits of those darling warriors, no matter what age they are…the HOT unit staff are angels on earth. And you are so correct about special connections with the nurses and doctors. Sal took care of Cory, too…they are amazing. I am praying now that those darn fevers just disappear and Lulu to continue her amazing journey of recovery. Raising my head up for God to continue his amazing grace through her and your words that will touch many…..supporting you from Illinois Today…Michele Batz

    Reply
    • Oh Michele, You’re amazing. Thanks for doing the work you do. We must have been on the HOT unit at the same time, but Lulu was in her room constantly. Wish we could have met your wonderful Cory. Glad to hear you had Sal too. I’m so thankful for their big hearts, and for yours. Sending love and strength to you and your family.
      T

      Reply
      • T-love you, too. And yes, we were there…Cory was in his room alot, too. But I remember seeing you and Lulu, when I would leave for awhile or just go down to the chapel. Stay strong and God is guiding you, as He does us, each and every day. God Bless….Stay strong, strong in Faith and strong in Hope.

        Reply
        • I recognized Cory’s picture. Such a hard time for everyone. I’m glad we at least crossed paths and the few parents we met have become a larger family to us. Now you are too. Much love, T

        • Yes, we have extended family now, all of us have been through what a parent doesn’t want to even imagine. God gave us the strength and now onto helping others, stay connected if truly a blessing.
          So, sorry that it went un-noticed..ugh…feeling for her, little Lulu. The moms that I met up at Children’s are the furious, strongest women of faith, I’ve met…

          Thank you for your response…holding your entire family up in prayer.

  3. Angel Max …

    Reply
  4. Any and all Cancer SUCKS. I pray that one day we WILL kick it’s rear right off this earth.

    Reply
  5. misty k

     /  December 1, 2013

    There should be medals of honor and courage to give to Lulu and her family, and all others waging the same war. Your story humbles me, beyond belief. I never realized how many unsung heroes walk among us every day.

    Reply
  6. Pat Herda

     /  December 1, 2013

    Hi T: so very sorry to hear of the problems Lulu (and the family) are enduring. I will be praying for all of you – I can’t even begin to tell you how sad this makes me.

    I just finished week one of retirement – it feels great but would continue to work forever if it helped Lulu! I’m on Jazz email until 12/13 after that use my personal email – ptherda@Comcast.net. I do hope you will get through Christmas with some peace and calmness – that is going to be my prayer for your family.

    Love, Pat

    P.s. Is there something special I can send the kids for Christmas? From San Francisco? Would love to!

    Reply
    • Thanks Dear Pat, so thrilled for you one week in :-). You deserve it and sending your love and good juju is enough. xoxo, T

      Reply
  7. Linda

     /  December 1, 2013

    Dear Lulu, I am sorry you had such a tough night in the emergency room the other day. I am glad Sal was there to help you through. Happy Birthday a few days late! Keep fighting girl! Nurse Linda

    Reply
    • Hi Linda, oh we wish you had been there that night too. Lulu still asks about you and talks about you a lot. We will visit again soon. Visit only I hope! Hugs, T

      Reply
  8. annika johnson

     /  December 1, 2013

    THINKING ABOUT YOU ALL THE TIME…FAMILY IS NEVER JUST BLOOD RELATIONS.
    SENDING YOU SOOOOO MUCH HOPE, LOVE, HUGS, AND PRAYERS….ANNIKA ❤

    Reply
  9. If I could only bake enough cookies to make cancer go away forever…I will sure try. Sending you love and strength. xo Melissa Joy

    Reply
    • And I would eat all the cookies in the world if it helped too. Hmm, maybe I’ve already started that … 🙂 Thanks for your sweet message Melissa. xx, T

      Reply

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