Conversations, emotions, and winding it all down

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“It seems like just yesterday, when you called us to see if we could take Mackenzie for you.”  I was having a conversation with a good friend last night and he was referencing the day that my wife and I will never forget.  It was when we first got that call instructing us to immediately head to the Children’s Hospital where they where awaiting our arrival in the emergency room.  They continued by informing us that they thought our youngest daughter Delaney had leukemia.  As our hearts sunk, we needed to find someone to take care of our other kids.  We had no idea how long we would be in the hospital with Delaney, we just knew we needed to be with her.   It seems like just yesterday, but it was actually about 800 “yesterdays” ago.

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After over two years of treatment, this past Friday was Delaney’s very last IV chemo.  WOOHOO!!!  My wife brought a card to say thank and a cake as we were ready to partayyy.  Even as we were pulling up to the hospital, we got the call to schedule the surgery to remove the port from her chest.  It is official, Delaney is definitely winding down her (non) adventures with cancer.

Before we went to her appointment, I called my wife to check in on her.  “I’m an emotional mess!” she admitted.  We are beyond thrilled for her to be done.  But, I guess if we are honest, we are also nervous and even a little fearful. For the past two years, she has had an entire medical team watching out for her.  What if something happens to her after Tuesday?  When and what do we need to worry about after this?  I have no idea, but I can’t help but be reminded that “Do not fear” appears 365 times in the Bible… one for every day of the year.

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“Do you know our kids have prayed for Delaney every single night for the past two years?”   I heard this again last night.  We’ve heard different forms of this, my son or daughter, my mom, our family, or I have prayed for your daughter….  We appreciate every single prayer said for her and for us.  I hope someday Delaney will understand how many people she had praying for her.  So many of them, we have never even met and probably never will this side of Heaven.   Thank you.  By the way, at that same function (and by “function” I mean watch the fight and play some poker party) a guy was wearing a “Cancer Can Kiss my Stache!” shirt.  I don’t know if he even knows who Delaney is or her story, but I love it.  Same for all those folks that have been wearing a rubber bracelet with the same message for the past two years, thank you.  I know I’ve said it before, but we can’t even begin to thank so, SO many people for their kindness shown to our daughter and to us.

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At Friday’s appointment, we met with her doctor and he filled us in what it would look like from here.  One of the things he wanted to make us aware of is how long it will take her immune system to fully recover.  It sounds like we can expect about six months for her immune system to be back to 100%.  She will continue to take one of her antibiotic pills for the next three months to help with that.  On that note, he wanted to see if there was anything that could be done about her persistent cough so he ordered a CT scan of her sinuses. That was one more affirmation that she is almost done as we get to wait a week for the results of the scan.

Anyway, some folks have asked what happens from here.   Along with getting her last IV chemo on Friday, she  also started her last five days of oral chemo and steroids.  On May 5th, mere hours away, she’ll get to take her very last oral chemo and finish her steroids (I’ve got to be honest, we are not going to miss the steroids one bit)!  After that, she’ll go back in once a month to see her doctor and to get labs drawn.  After 12 months of that, assuming all is still good, she’ll go to every other month.  Then every three months, and so on.  Eventually she’ll only have to go once a year, and that will pretty much be for life.  Within the next couple of years, we will go to something called the Hope Clinic where they will further educate us on, and watch for, the long term side effects of her treatment.

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Tonight, my wife was brushing Delaney’s hair and they were being silly together.  Delaney even allowed her to pull her hair back in a ponytail, and she observed that her hair was now almost as long as when she was first diagnosed.  “Don’t cry mommy,” Delaney told her.

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As for Delaney, she is doing amazing even during this steroid week.  She followed up Friday’s chemo by playing in her soccer game Saturday and Sunday.  As excited as we are for her to take her very last chemo on Tuesday and get her port out on Thursday, she is probably even more excited to perform a hip hop routine with one of her best friends in her school’s talent show on Wednesday.  After all, she is just a (very cool) kid!

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12 thoughts on “Conversations, emotions, and winding it all down

  1. I just wanted to say what a pleasure it has been reading all your posts. I realise ‘pleasure’ is not the best word to use in these circumstances, but Delaney is obviously a gorgeous young girl with a wonderful family surrounding her, and your writing has been beautiful, especially under the circumstances. I’m so pleased to hear that she is nearing the end of the two years and all the chemo, steroids, etc. Thank you for keeping us informed of her, and your, progress. You are all amazingly brave and I wish you all a happy and healthy future. Please keep us up to date on Delaney’s progress over the years. Love to you all from Down Under.

  2. What a beautiful family! My kindergartner was diagnosed with ALL 4 months ago this week. I googled blogs today and just found & read yours. You are all very inspiring! Much of what I read could have been my own feelings and words. Delaney is a rock star! Best to all of you. Keep rocking, kiddo!

  3. Hey Tom,

    I am so glad that Delaney has completed her IV treatments. Your blog has been inspirational to many I am sure and I know that His Word has been presented in a way that many would not have expected. We will keep praying for Delaney and her recovery.

    Todd Henderson

  4. Dear Tom and Family,

    I am so happy for all of you! Delaney is definitely a little fighter! I have thoroughly enjoyed reading your blog. It has been very inspirational. I will continue to keep Delaney in my prayers and know that God has a wonderful plan for her.

    God Bless,
    Sheri Palizzi

  5. Congratulations to Delaney and your entire family! William still has such a long time to go since his treatment protocol is 3 years instead of 2, but I imagine when William gets close to his last chemo doses that our thoughts /feelings and concerns will be close to what you have expressed.

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