Monthly Archive: July 2015

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Surgery Success

31.07.2015 Posted in Uncategorized 4 Comments

Thank for all the thoughts and prayers today; Lucy’s surgery went great! She was first on the schedule for the day and it was over super quick with no complications. For the first time in all her general anesthesia procedures she woke from anesthesia without crying/screaming. I went back to recovey and she was actually sitting quietly on the nurses lap! We were home by 9:00 am and the only challenge for the rest of the day was trying to keep Lucy calm. She was quite literally running laps around the house and bouncing all over the furniture.

It is a glorious feeling to pick her up and hug her little body with NO dangling lines! Lucy was rubbing over her chest in wonder and I asked “Lucy, where are your tubies?” Violet responded totally matter of fact “in the trash”. Ha!  

 Here is Lucy saying goodbye to her “tubies”. We took her vest off for about an hour in preparation for surgery … what a stressful hour! She was biting, yanking and stepping all over them! It would be pretty ridiculous if we got Lucy all the way to pre-op and she yanked the line out herself moments before being rolled into surgery! 

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Yank Date

27.07.2015 Posted in Uncategorized 7 Comments

There is not much going on with Lucy these days (thank God!) but we do have one piece of exciting news to share. Lucy is getting her Broviac out this week! Thursday, July 30 is the official “yank date”. This is a huge step and a big relief. No more flushing lines, carrying emergency supplies everywhere, or rushing to the ER with every fever. Finally Lucy will be able to take a full bath, go swimming, and wrestle with her sister … which she does anyway. I’d like to say that this means Josh and I will ease up our helicopter parenting style when it comes to Lucy, but I have a feeling that won’t be so easy. Besides the convenience and safety factors, central line removal is a significant milestone in cancer treatment. It is a sign of hope and faith from Lucy’s doctors that she won’t need it for treatment; no more hanging on to it “just in case”. We believe in this cure! Please pray for a successful surgery, and that this is the LAST surgery Lucy will ever have (cancer related, anyway!). 

We will go to clinic on Wednesday for one more blood draw before Lucy loses her broviac (the downside of broviac removal – blood draws will be a poke now) for monthly labs. A sample will also be sent to Seattle to test for T cells. We feel confident that T cells are still with Lucy, doing their job, but testing day always makes us anxious. 

   Hoping this is the last time we ever see a broviac in our baby, or as Lucy calls it “My tubies!”

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PersistenceĀ 

8.07.2015 Posted in Uncategorized 14 Comments

The sweetest phrase we have ever heard … “Lucy has persistence” was announced today in a phone call from Seattle. Heidi gave us the GREAT news today that Lucy’s blood and marrow results show the presence of T cells, and a good amount! Dr. G in Seattle is very pleased with the results, especially at this time. Before we left Seattle she told us that the day +63 test (July 1) is kind of a big deal. We are so thrilled and grateful for all the thoughts and prayers for Lucy! Our prayers are being answered!

We will talk to our team at Glennon about where to go from here. We mentioned the idea of having Lucy’s broviac removed if these results were good, so more discussion about that exciting milestone. Something to consider is that her immune system is only a few months into a year long recovery period, so we like to know what her counts are pretty often, and she still needs support infusion therapies for a while. Both things are easier on her with the central line in place, but it’s a hassle/danger for her busy little body, so lots to think about. As far as reports to Seattle, we are on a month to month analysis requirement . Our team will send blood to Seattle as long as Lucy shows T cell persistence, which we hope will be a long time. There are no guarantees, and predictions are shaky at best, but the hope is that she has them in her body, working hard, for as close to a year as we can get; THEN, we may be able to say the “C” word – cure! 

While Lucy was receiving her T cells, and still often now, I pray over her Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Feeling this today!

I rarely take pictures of Lucy’s medical elements, but I felt compelled to take these the day of her LP/BMA… praying these mark a “last time”. Though the needle marks from her dozen or so LPs quickly fade, her hip is clustered with dotted scars from several bone marrow biopsies. She has worn this vest strapped tight around her chest to protect her broviac line for 17 of her 27 months of life, and she does it with a smile on her face. I am hoping and praying  that this is the last time I see this dressing on her back and that we never have to buy the next size up in this vest.