September 11th

Our sad memories of 9/11 were overshadowed this year by a stressful day in the ER with our 1-year-old daughter at Primary Children’s Medical Center. After many tests, physician consultations and about 10 hours, she was admitted and transferred to Pediatric ICU and we were told that the various and seemingly unconnected skin conditions we’ve been dealing with since she was 2 weeks old are all caused by Langerhans Cell Histiocytosis or LCH.

LCH is a rare disease where a type of white blood cell that normally helps the body fight infection, called Langerhans cells or denditric cells, multiplies and infiltrates various parts of the body causing tumors and damage to organs. In mild cases, only the skin is affected. Our daughter’s is a high-risk case in that in addition to her skin being affected, her liver and bone marrow have also been infiltrated, and caused liver failure and blood clotting issues.

A happier moment before the feeding tube was put in

Jenna spent a month in the Immune Compromised Unit of the hospital while they started her year-long chemotherapy and steroid treatment, and stabilized her liver and blood levels. Because she tested positive for the rhino virus, she was confined to her room except for procedures and tests that had to be done elsewhere. I barely left Jenna during the month, hardly even put her down, and only spent an hour at home during the entire hospital visit. Seeing her so sick, in such pain, not understanding completely what was happening and feeling so powerless was like a nightmare sometimes. I often wanted to disconnect her from all the machines, run away and never come back. But I knew if I did, she would die. And so I found ways to cope, like not thinking any further into the future than the end of the day or night. I listened to recorded books to drown out my inner dialog and the machine noises. I watched a lot of “Friends” reruns. When I slept long enough to dream, I often dreamed about sewing. I breathed in and out. And we got through it.

Finally Jenna was discharged, only to return 24 hours later because she had a fever. Because the chemotherapy suppresses her immune system, any fever 100.4 or higher that lasts for over an hour warrants a trip to ER. Luckily we were able to come home within a couple of days and have only had one other overnight stay for observation after a biopsy of her liver since then. The rest of her treatment has been outpatient so far.

Content in Mom’s arms

And so we’ve been trying to establish a new “normal”. My husband returned to work. I have started working again, a little. I’m cooking dinners again, sometimes, and picking our son up from school. All the things that were normal are basically back in place, plus more. I am nurse now in addition to Mom. Jenna has a feeding tube, a PICC line in her arm and almost a dozen medications she needs twice a day. And I work very hard to keep our house disinfected – anything I can do to keep Jenna healthy and out of the hospital. I hit the ground running in the morning and hardly stop all day and night. (It took nearly 3 weeks just to finish this post.)

Puffy from steroids but super cute and happy to be with her peeps

So if you’ve wondered where I’ve been and why I haven’t posted much for a while, now you know why. I’m trying to get back in the groove but it’s taking longer than I thought it would. And always in the back of my mind I’m worried she’ll get an infection and fever or that her treatment isn’t working and they’ll have to admit her to the hospital to do heavy-duty chemo. But as of now, all is well. Jenna is happy and active and her treatment is working slowly but steadily. And we are doing the best we can.

Posted in Blog Posts, Fabric of Life, LCH and Chemo Tagged with: , ,
3 comments on “September 11th
  1. Cathee says:

    My thoughts and prayers are with you and your little one.

  2. Thank you so much Cathee!

  3. Thank you Melissa!!

19 Pings/Trackbacks for "September 11th"
  1. […] early December Jenna’s condition was re-evaluated. While she responded well to the first 12 weeks of outpatient chemo, from […]

  2. […] so, as he put it, it’s a “tricky situation”. Are her liver labs high because the LCH is still active or because of scarring from the disease or chemo or both or just distress from the […]

  3. […] you want to read about Jenna’s healing journey, this link will take you to the beginning blog […]

  4. […] been thinking about my 52 Pillows project, and sewing in general, now that my daughter is in remission and we’re not spending nearly as much time at the hospital as we have been the past 9 months. […]

  5. […] we received Jenna’s diagnosis last September, our lives were turned upside down. We’ve had tons of questions… about her diagnosis […]

  6. […] we celebrated Jenna’s 2nd birthday this week and as the one-year anniversary of Jenna’s diagnosis approaches, I feel nothing but […]

  7. […] missed Peach Season last year being in the hospital with my daughter. So I’ve vowed this year to make the most of it! No peach will be left […]

  8. […] I’ve realized since my daughter’s condition has been stable and she’s in remission, instead of trying to find a new normal, I’ve […]

  9. […] last year was only a couple of weeks after Jenna’s month-long hospital stay. As my husband prepared to take the kids trick-or-treating I said, “It looks like […]

  10. […] been thinking about my 52 Pillows project, and sewing in general, now that my daughter is in remission and we’re not spending nearly as much time at the hospital as we have been the past 9 months. […]

  11. […] I’ve realized since my daughter’s condition has been stable and she’s in remission, instead of trying to find a new normal, I’ve […]

  12. […] missed Peach Season last year being in the hospital with my daughter. So I’ve vowed this year to make the most of it! No peach will be left […]

  13. […] we celebrated Jenna’s 2nd birthday this week and as the one-year anniversary of Jenna’s diagnosis approaches, I feel nothing but […]

  14. […] (You can read about where our journey with Jenna began here) […]

  15. […] we were in and out of the hospital with our young daughter this past year, our 10-year-old son was changing, and not in a good […]

  16. […] early December Jenna’s condition was re-evaluated. While she responded well to the first 12 weeks of outpatient chemo, from […]

  17. […] think by now I’d be used to at all this, but I’m so not. Even though we’re 8 months into Jenna’s treatment, I still often feel overwhelmed and afraid and powerless. But there are things we’ve been […]

  18. […] we received Jenna’s diagnosis last September, our lives were turned upside down. We’ve had tons of questions… about her diagnosis […]

  19. […] mainly on my family, specifically, caring for our now 2-year-old daughter as she has gone through chemotherapy and treatment for liver damage. As 2013 comes to a close and I look back at all we’ve been […]

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