A bumpy road

Life with a sick little girl is never dull and rarely relaxing. The past week and a half has had some fun adventures for the Love family but also a lot of worry and has required a great deal of flexibility.

After a major reaction to her PEG-asparaginase, Emily’s doctors began a round of a new form of Asparaginase, called Erwinia. Unlike most of Emily’s chemotherapy drugs that are delivered by IV, the Erwinia is injected by a series of six shots over two weeks. She received her first shot on June 8th, and after she showed no allergic reaction, Emily and her family were able to enjoy a sun-filled weekend at the ocean in Monterey. They enjoyed waves and sand and a family bike ride along the shore. A much needed break for the entire Love clan!

Christina was hoping for another brief break from daily hospital trips the following Thursday but her hopes were dashed when the nurses called in the morning to report that Emily needed to come in for blood and platelet transfusions. It is hard on the entire family when Emily has daily trips to the hospital. It means less rest and less family time for everyone. But the burden is eased by the support of family and friends who regularly watch the older children and are available even last minute to step in and help.

The lack of an initial reaction to the Erwinia hinted that Emily’s allergy was to an E-coli carrier in the PEG-asparaginase rather than to the entire line of Asparaginase drugs. However, after her fourth injection on Friday morning, she developed a local skin reaction which was quickly treated with Benadryl. This reaction, though slight, is likely a precursor to a more severe reaction and so Emily will not receive the additional two doses of Erwinia for which she was scheduled and is now considered allergic to all forms of Asparaginase.

Though Emily showed no further signs of a reaction, she was clearly in pain throughout the weekend. Nausea continued to plague Emily and she was fussy and unhappy all through Father’s Day. Christina slept little through the past weekend, waking several nights to find Emily warm with fevers. None were high enough on their own to warrant a trip to the hospital and the fevers were usually gone by mid-morning but they added to a mother’s growing unease.

Dr. Ducore took note of all these symptoms during Emily’s medical appointment Monday morning but didn’t see the need for hospitalization. He said that much of her discomfort is part and parcel of receiving chemotherapy. Nonetheless, with her platelets at 30 and her ANC at zero, it is clear that Emily is not strong enough right now to move to the next phase of her treatment. With hopes to resume treatment next week, Christina and Emily returned home Monday morning looking forward at last to a few precious days away from the hospital.

At the Infusion Room

It is difficult to hear Emily fuss and repeatedly say “ow”. We all know that she is uncomfortable, even in pain. Her body is covered in bruises and she rarely eats any solid food. She has periods of high spirits in which we all get to laugh and play but in the back of all our minds, we know Emily is a very sick girl who is fighting so very hard to get healthy.

This effects no one more than Emily’s immediate family. Her siblings, who may not fully understand what is going on, definitely know that Emily is struggling. When Emily and Christina had to go to the hospital at the last minute this past Thursday, Adam taped shut the front door and made a sign indicating the hospital was in the back bedroom – his own quiet way of saying he is tired of his momma and sister having to go away so often.

Christina and Jason also struggle. Both wanting to be able to make their daughter feel better; to be able to hold her, comfort her, do whatever they need to do to fix what is wrong with her. But this is not something they can fix, not something that they can make go away. It takes a lot of courage and an enormous amount of faith to trust the Doctors to make the best decisions for Emily and ultimately to remember, every day, that Emily is wrapped in God’s loving arms.

None of us can understand why Emily has Leukemia. Why a child with so much life and spirit is struggling and suffering. But it is clear that God continues to watch over Emily and her family. He has surrounded them with family, friends, and strangers who provide meals and childcare; donate blood and platelets; offer financial support or the gift of a weekend away or a night out; who constantly are praying and lifting the family up to God; who give hugs just when they are needed most.

And God has also given Emily a team of doctors and nurses who dote on her and care as much as each of us about Emily’s health and survival. They watch over Emily diligently both in the hospital and out; are searching for the best treatment plans; offer smiles and laughter, gifts and hugs. They have decades of knowledge and expertise between them and they are committed to helping our Stitch beat this cancer for good.

Between her allergic reactions, her fevers, her mobility challenge, and her loss of appetite, Emily has certainly had her share of obstacles. Her path thus far has not been straight and narrow, it has been twisted and bumpy and will likely continue to be. But there is peace in our Lord, knowing that He is watching over us all and carrying Emily, and her family, in His arms. Whatever the future holds, it will be met with faith above all and with the strength and peace that only our God can provide.

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4 responses to “A bumpy road

  1. gabrielle ingram

    Well said. Thank you sis.

  2. I hope you don’t mind me writing I am so sad for little emilyannelove and her family. Cancer is mean and ugly. First, it is shocking to be told you have cancer, and I can’t even imagine what this news is like for a parent to hear concerning their child. Second, yes, it does hurt and it is “owy” – bless that little girl, Dear Lord! Third, it effects the whole family and everyone “hurts.” Fourth, thankfully we have God! And in the midst of our suffering and questioning, He is there bringing to us the comfort and peace we need at that moment. Fifth, cancer has no schedule and does not work with calendars. The lesson? We have absolutely no control.
    This posting prompts me to write an article on my blog about how illness touches each and every one in the family of the patient. My heart just broke to read little brother taped the door shut . . . I am praying for all of you. I believe I read that many extended family live in the area – what a blessing! To all of you, love on little emilyannelove’s siblings, they are trying to be strong, little soldiers but they hurt, too. Many, many prayers to the Love family today – Cyndi Heath
    http://advocateofhope.wordpress.com

  3. What a cutie! Thank you for posting pictures. That smile warms my heart, knowing, just in part, all that she has been through.

  4. Pingback: Celebrations! | emilyannelove

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