So Close and Yet So Far

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We’re SO close to the end, less than 4 more weeks of therapy, which makes the events of this last week that much harder.  Since I always like to get the bad news out of the way first, I’ll start with that.  It’s been an eventful week with lil Lulu.  We ended up in ER again, this time with 103.7 fever, headache, vomiting and wicked-scary cough (the biggest concern with leukemia patients since this could turn into pneumonia).  Our good friends took Max so Jimmy and I could both go in with her.  You know the drill by now: total panic and desperate crying from Lulu when she finds out we’re going to E.R., the usual tests, prodding, poking, fluids etc. … We ease the pain and much as we can, and ever since the infamous 4-nurse and 6-missed port pokes, we ask for someone to come down from H.O.T. to access her difficult port.  We were SO lucky to see our dear Linda come down.  This is the nurse that Lulu once told me if she could have another mommy, she would want it to be Linda.  It was like seeing family when she came and helped tremendously.  Hours later, her counts came back high enough that we could leave for that day.

Day 2, fever returned.  I took her in so Jimmy could stay home to protect Max from seeing his sister go through it all.  Repeat of above plus heightened anxiety and, luckily, another great nurse from H.O.T.  She was additionally given Tamiflu and antibiotics.  Her fever finally seemed to break.  We left at 11pm only to return to clinic the next morning.  This time for surgery consult (for hernia and port removal), chemo, bloodwork, and nose swabs.  That’s 3 days in a row of port-poking and rollercoaster anxiety.  I must tell you though, that as petrified and Lulu has been (literally shaking and crying with fear at times), she always pulls it together and finds what we call her ‘brave spot’ to get through the actual procedures.  She truly amazes me and I continue to be impressed by her sheer will and tenacity.  She even seemed to be bouncing back and so much better that afternoon.  We also had an unexpected visit from Bo’s mom Annika, which brightened our day immensely!  She and her crew were donating a $10,000 check to the MACC clinic from The Go Bo Foundation.  We just love them and the work they are doing.

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(Elephant to color on from Annika)

Long story short-ish, we’ve found out she has Human Metapneumonia virus and, as the name would indicate, one that can turn into pneumonia.  We also found out that her IGG (immunoglobulin – important component of the immune system) is low, which may be why she’s been getting sick more often and severely.  She will need and infusion of this, which can be risky.  Allergic reaction is possible (we NEVUH want to go through that again) and because the product is harvested from over 10,000 blood donors there is risk of contracting serious viruses.  Of course, we’ve consulted with the nurses and doctors, read the information and feel this is a necessary risk.  She will receive the infusion over 4-8 hours tomorrow.   Please keep her in your thoughts.  We are so close to the finish line!

Which brings me to the good news that’s really great news: March 6th will be her VERY LAST DOSE OF CHEMO!!!!!!!!!  That’s right, a mere 3 weeks away!  She will have a highly anticipated day at Children’s where she will ring the bell, signaling the end of her treatment.   We’ve heard just a few others ring it, and it’s the best sound you’ll ever hear.  Both Jimmy and I get choked up just thinking about it.  She is scheduled to have her hernia surgery and port removal on March 11th, barring any illness or low blood counts.  The light – no, the rainbow— at the end of the tunnel is brightening, just have to move through these last storm clouds.  We have decided to homeschool her until she is finished with therapy.  Her doctors and teachers concurred, knowing there is strep and flu prevalent in the school right now.

The first year off therapy she will have monthly blood work and checkups.  Year 2 will be bi-monthly, I’m foggy on the rest, but I believe years 3-4 will be every three months, year 4 will be every four months, and year five will be every 6 months.  After year 5 we use the word CURED.  Have you ever seen a prettier word?

I’ll try to keep updating you in shorter spurts over the next few weeks.  Thank you for your continued support, love and good juju for lulu — and a.l.l. of us.

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24 Comments

  1. “Cured” is a beautiful word to be attached to such a beautiful little girl with such an amazing and beautiful family. What a glorious celebration that bell will be!

    Reply
    • It sure is Stephanie!!! Thank you so much for continuing to follow our story. Glad to see you doing so well with your blog and life 😉

      Reply
  2. stef

     /  February 12, 2014

    What a beautiful little girl. She is very lucky to have you, her father and her brother. Prayers to you.

    Reply
  3. Michele Batz

     /  February 12, 2014

    Hang on, keep fighting and God will bless your faithfulness. Cheering for all of you from Illinois. We know your road all to well…..Hugs to you…Dale and Michele Batz (Cory’s parents)

    Reply
    • You do know the road far too well… I’m so grateful for people like you who continue the fight and make a difference. THANK YOU!!!

      Reply
  4. Jennifer Fischer

     /  February 12, 2014

    Happy tears thinking of Lulu ringing that bell! XO

    Reply
    • Oh Jen, cannot wait!!! There will be video from Miracle Marathon, so will share that with you and all as soon as we get it. xoxox

      Reply
  5. Erik Farmer

     /  February 12, 2014

    GREAT healing energy Lulu’s way, T!

    Reply
  6. Holly

     /  February 12, 2014

    You don’t know me, but I know of Jimmy and Lulu through Jimmy’s work with the Sojourner Family Peace Center. Just leaving a note to remind you that there have been more prayers said for your daughter than you may ever know, from people you may never meet. Cheering for Lulu and the rainbow ahead!

    Reply
    • Hi Holly, Thank you for reaching out. We’re so touched that you have people praying for us … and love the work you are doing with Sojourner. It’s a wonderful place serving people who really need help. I know Jimmy enjoys that show every year.

      Reply
  7. annika johnson

     /  February 12, 2014

    LOVE LOVE LOVE YOU GUYS….SUCKY NEWS, ALONG WITH GOOD NEWS, IS BETTER THAN SUCKY NEWS, WITH “NO” GOOD NEWS! KEEP US POSTED…SUPER WORRIED NOW. STAY STRONG, & KNOW THAT WE ARE ALL OUT HERE BITING OUR NAILS TO HEAR MORE “GOOD” NEWS!!!! JU, JU….MAJOR JU, JU….COMING YOUR WAY!

    Reply
    • LOVE you Annika, you give the best JUJU!!! And I have a picture of Lulu hugging you tightly engraved on my heart :-). xoxoxo

      Reply
  8. Heidi Hodges

     /  February 12, 2014

    Just reading this after seeing the post by Annika. You don’t know me–I don’t know you. But, as a parent, I can’t imagine anything harder to go though. (I, myself, went through chemo for breast cancer while my sons were 6 and 9 and we continued to homeschool. Great way to ease the stress of the situation.) Mainly, I wanted to tell Lulu that I’m a grown up, but I feel the same way about “procedures” and needles. I’m pretty sure I never found my brave spot, so I totally admire her for working so hard to find one. Totally admire her.

    Reply
    • Heidi, posts like yours are the most moving to me … it makes me feel like writing all this down, putting it out in the world in a vulnerable way is worth it. Thank you for following, and I’m quite certain that your brave spot is bigger than you know. You’re still here, surviving and taking action. That speaks volumes about you. Best wishes for continued health to you!
      T

      Reply
  9. Janene

     /  February 13, 2014

    All of you are in my prayers!! I can’t wait to read your entry about Lulu ringing the bell!! Keep strong. Lots of love being sent your way. ❤

    Reply
  10. Allison Yager

     /  February 14, 2014

    Oh T………as I sit here and try to find the right words or any words…..my tears won’t stop. Tears for the pain you all go through (the fevers, the counts, the port pokes, etc.) I know them all to well. Having to watch your baby go through that is unimaginable. And tears for being soooooo close to the end of Lulu’s war. Removing that port…..I too dream of that day because then you truly know it’s over. Lulu, Mason, Jimmy, and you are in my thoughts and I pray that you have a calm end to your war. Lulu’s light is bright…..just like her mom 🙂

    Reply
    • Oh allicat, this is the best post … so thoughtful and heartfelt and I wish it weren’t so full of empathy, but know it goes both ways. I think of you every day and know your light is also shining bright, just waiting to turn on the high beams!!! Love you.

      Reply
  11. Mitch

     /  February 15, 2014

    that little girl of yours will be SO strong after all this you won’t be able to live with her! ;). juju coming your way, you are all so strong i can’t believe how much you have come through already and are so graceful. even though i KNOW it has been your biggest parent nightmare, your family is a true inspiration to us all.

    Reply
    • Thanks Mitch, I agree, she will be SO STRONG!!!! Thank you for your sweet comments 🙂 Tomorrow’s the big day!

      Reply
  12. Linda

     /  February 22, 2014

    It was a joy to see you and Lulu and Jimmy….just wish it didn’t mean Lulu was sick. I loved the video you shared….its just beautiful. I work on March 6th and will do all that is humanly possible to make it down to the clinic to hear Lulu ring the bell. What a day to celebrate!

    Reply

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