A tea party and some hope!

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This is how we started the morning – eating cereal while Momma researched Immunoglobulins on her phone.

We’ll chronicle the hope first – because hope is definitely appreciated when you’re still stuck in the hospital and wearing these very-NOT-Egyptian-cotton  gowns and masks!  In Emily’s case, her hope will come from Immunoglobulins.  They tested Emily yesterday and she is low on Immunoglobulins A and G.  Our bodies produce antibodies, or immunoglobulins, that help us fight infection.  Emily’s body is not producing enough of  the immunoglobulins A and G so when she’s exposed to a virus or bacteria, she can’t fight it off like everyone else.  And this is the second time she has been felled by a “simple” Rhinovirus. Sometimes immunoglobulin deficiences just occur and sometimes they are due to leukemia or chemo.  In Emily’s case, it’s probably either the leukemia or chemo – especially considering that antibodies are produced by the B-cells and she has B-cell leukemia.   Her Oncologist is going to start her on intravenous IgG  (Immunoglobulin G) infusions today – and then she will get them every three to four weeks throughout the rest of her leukemia treatments, and maybe longer.  She’ll be tested periodically to check her level.  At this time, IgA infusions aren’t medically possible because IgA hasn’t been able to be reproduced to be able to infuse.  However, IgG antibodies make up 80% of your antibodies so the hope is that this will help Emily stay out of the hospital.  As her Oncologist, Dr. Ducore, told us, there isn’t a lot more that Chrissie can do at home than she’s already doing to protect Emily from exposure but there is maybe something that they – the doctors – can do to help Emily.

Okay, this is Emily, in a totally two-year-old, I-have-absolutely-had-it-with-this-place moment, pulling for all she's worth on her IV lines!

Okay, this is Emily, in a totally two-year-old, I-have-absolutely-had-it-with-this-place moment, pulling for all she’s worth on her IV lines. We, Momma and Grammie, were on the sidelines, making sure she didn’t actually do any damage to the lines!

As I type, we are still in the ICU, mostly because there hasn’t been a bed available on the Peds floor for Emily.  Her O2 saturations remain mostly stable – unless she’s screaming or having a two-year-old moment – and she has been off of oxygen for almost a day.  Her heart rate and respiratory rate are mostly normal.  She is still tired but then she did had some spots of inflammation, or fluid, in her lungs so we know that although she doesn’t have pneumonia, she’s not moving air  as efficiently as normal.  That will just take time to resolve and she is doing better every day.  We are now waiting for the IgG infusion to come up from the pharmacy – it will take two to four hours to infuse – and then Emily and Chrissie might be able to go home later today.  We are hanging onto that hope – and very, very thankful for the medical treatment that Emily has been getting at U.C. Davis that can give her hope to beat all of this.

Peace after the storm --

Peace after the storm —

Sophie and Abigail - all dressed up like the young ladies they are --

Sophie and Abigail – all dressed up like the young ladies they are —

Now, for the tea party!  Sophie turned five on December 28th and Chrissie wanted to give her an English High Tea for her birthday party.  Of course, it was all set up for yesterday, January 5th, and then Emily landed back in the hospital.  It took a lot of planning and phone calls and prayers but all of us arrived at Tea Anytime (in Fair Oaks) as planned – although, a little bit late. Chrissie, Grammie, Auntie Gaby, Sophie, and Sophie’s best friend, Abigail. The girls were dressed in their best finery – and the adults did their best, after dealing with all of the logistical problems of even getting there! When you walk in, you are instantly transported into an English tea cottage – all dark and antiques and cloth linens.  Absolutely amazing for five-year-old girls and their entourage!  We were served wonderful hand-blended teas in teapots with cloth tea cozies – and trays of  scones, sandwiches, and desserts.  We left, cozy and full.  A little bit of magic in an otherwise, all-too-often, abnormal life.

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13 responses to “A tea party and some hope!

  1. Genie/Grammie What a wonderful family you all are! I become hopeful each time I read about you and Chrissie and Stitch. May God’s blessings rain upon you…..Love, Barbara

  2. Thank you – I love it that you are following Emily’s blog. You cannot know how much that means to us – or maybe you do – but want to tell you, anyway. —– Love you, Genie

  3. I am so happy Sophia still had her special celebration in the midst of the chaos. It’s so important for Emily’s siblings to still get special mommy time. And I love the pic of the Stitch-fit! So typical! Good job showing her less than adorable side! haha

  4. What a sweet tea party, so adorable!!!!! I am SO glad that her Oncologist has found a treatment that may help sweet Emily fight off these very problematic little colds. Hopefully this PICU detour will while make things smoother in the future with immunoglobin infusions. Thank you God for UC Davis and caring for this family through your gift of medical science and your supernatural kindness to them.

  5. Dear little emilyannlove –
    I can’t produce anti-body G. My cancer messed me up, too. I used to get sick all the time but when the doctors saw my IgG’s were critically low they started me on infusions every 8 weeks. Finally, my cycle of illness was broken. For the most part, I have stayed quite well but I have to be very careful. I must be picky about social gatherings, making sure I do not get around colds. Sometimes it is real hard because that means I can’t go anywhere. Remember, Emily, you have captured my heart!!
    Cyndi Heath
    http://advocateofhope.wordpress.com

    • Hi Cyndi, Since you stopped treatment, have you been able to produce your own IgGs? I asked Emily’s Onc, and he’s hopeful she will be able to when she’s finished, but he couldn’t really tell me. When you get sick, have you found anything that helps you to recover faster? I know I can’t keep Emily in a bubble, and I’m really hopeful these infusions will give her what she needs to stay healthier, but it scares me a little that she is at such risk.

      • Chrissy,
        I have never been able to produce IgG’s since my transplant. I was not made aware prior to my transplant that this could possibly be one of the consequences. I didn’t find out until my 100 day check up and the doc noticed my level and gave me my first IgG. At that time I was getting back to back illnesses that went into secondary and in need of anti-biotics.
        I have since learned IgG infusions are controversial among oncs. My primary onc said they aren’t necessary, my local onc believes they are necessary in order for me to fight viruses. I followed my local onc and after about a year of 8 week cycle infusions my constant sickness was broken. I’d say I am more “normal” now when it comes to the common cold but when I know cold and flu season is here I schedule an infusion. I learned that once I am infused and back in the normal range the IgG will deplete itself in about 8-10 weeks. I was told by my onc that I need to be “germ aware” around children, around nursing homes, hospitals or large closed room gatherings. I don’t help in Sunday school or anything to do with children, I am a hand washer and just germ aware. I have an infusion today (a few days too late as I caught a cold) hoping to boost my system for my daughter’s PA wedding. Our transportation is air and I will wear a mask to be even more cautious as the influenza epidemic is crazy right now! The internet will help you become more educated and then take your questions to the doctor. Maybe in children they will regain their ability to produce IgG? Aways-Cyndi

    • And Cyndi, thank you so much for continuing to pray for Emily!

      • Thank you for your thoughts, Cyndi. I’m doing some research and am looking forward to talking with her Onc next week. In the meantime, we’re staying near home and she’s wearing a mask if we do go out.

  6. May you be surrounded by His angels as you (Grammie) bear the burden for your daughter and grand daughter. Praying continually for all of you. Protection from the enemy of our souls and showers of comfort and rest from His hands. Healing for precious Emily in His prefect time – soon, we pray!

  7. Genie Turner Holleman

    Thank you, Monica. I really appreciate your thoughts – they are so true.
    Genie —

  8. Pingback: Celebrations! | emilyannelove

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