Monthly Archive: November 2015

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Pepper

24.11.2015 Posted in Uncategorized 11 Comments

As we continue to get mentally and emotionally prepared for Lucy’s next phase of treatment, our family took a hit last night as we said goodbye to Pepper the dog.

Back in 2002, after Kenda wore me down and convinced us to get a dog, we took notice of the little black mutt named Julia at the Humane Society.  The best guess was that she was a mix between a Boston terrier and a mini pinscher and she appeared bored in her cage surrounded by a rambunctious collection of puppies.  She was a year old, having been returned by a previous family after she chewed her way out of a plastic dog crate.  Despite all the warnings about separation anxiety, we took her home, changed her name to Pepper and she immediately became our first baby, getting pampered and spoiled at every turn.

It didn’t take long to become familiar with her catalog of quirks and understand that “separation anxiety” was cured by leaving a blanket in her cage so she could bury herself underneath. We included her in everything from our regular trips to KC to our annual Halloween party (she put on quite a show dressed as Barbaro one year).  Like most dogs, she gradually became a little more cranky and smelly as she got older and she inevitably took a back seat when Violet and Lucy joined the family.  She seemed to accept it as a fair trade for all the human food she was scoring from them.

She cruised through 13 years with minimal health issues, but it wasn’t hard to see she was starting to struggle in recent months.  When another setback popped up this week, we felt it was time.

She was a good dog, the best napping buddy ever and a part of the family that we’ll always remember.

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Ducks in a Row

21.11.2015 Posted in Uncategorized 9 Comments

Josh, Lucy and I met with Dr. M and a few of the members of our new “team Lucy” at Children’s Mercy this week. Dr. M was so kind to let us take up several hours of his time. He was completely open to any of my crazy ideas and answered every little question we had. It is pretty overwhelming, but I will try to briefly outline what comes next.

As I mentioned before, Lucy is extremely lucky that she has three perfect matches. Finding just one perfect match is like a needle in a haystack, and often doctors are happy if it is close. One is a “live donor” 10/10 match. We actually knew this in February, after she first relapsed. As we discussed options our BMT coordinator said “actually I have heard back from a match – an 18 year old male.” I started crying right there – what a great kid!! If you aren’t on the national donor registry, please consider it (www.bethematch.org), and if you get the call, please say yes!! I’m actually a little sad that we won’t use this person’s precious gift, it would have been so great to meet her lifesaver; Lucy will get a cord. She also has two perfect 6/6 umbilical cord matches. This will be anonymous forever, we will never know whose precious cells have given her a new life. To all the mamas who donated your babies cords at birth – you are superheroes! Thank you!! You may have saved Lucy’s life. A cord was the best choice for several reasons, one is speed. Dr. M wants to get going as soon as possible, basically, before Lucy relapses. A live person takes a little coordinating but a cord just needs to be shipped to KC from wherever it is. It may feel like things will begin to move fast from here, but really, we have been putting this off since relapse in January.

The week after Thanksgiving Lucy and I will come back to KC for about three days for her evaluation. She will have scans, ultrasounds, lots of blood tests, and anything else they can use to check the function of her organs and overall health. We don’t expect any deficiencies but she must be cleared for transplant. The following week Lucy will officially start the transplant process. More details on this process later, but it is approximately nine days of a combination of radiation and high dose chemotherapies to wipe out her “old” bone marrow. Then a day or two of rest puts the actual transplant day sometime during the week of Christmas. It will only take about 30 minutes for Lucy to receive her new cells, this is “day zero”. Then the hard, brutal work begins inside her little body. We can expect Lucy to be in the hospital for about 30 days after day 0, if no complications arise. This is the best case scenario timeline, and it is still in the works. 

For the next week or so we go on about our ordinary day while mentally and physically preparing for this big, huge thing that’s about to happen. Simple, right?!

  
  

  
  

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She Looks Great

9.11.2015 Posted in Uncategorized 12 Comments

Lucy sneezed in the car the other day and asked me for a Kleenex. I told her sorry, I didn’t have one, and she said (truly pleased with herself) “I have an idea! I can just use my shirt. How bout that?” Or maybe she said skirt because I looked back and saw her wiping her nose with her sparkle tulle skirt. This girl is so naturally funny, smart and happy. Many people comment that Lucy “looks so great”, and this is absolutely true which is why it is with much trepidation and sorrow that we have consented to Lucy having a bone marrow transplant, at Children’s Mercy in Kansas City. This decision was agonizing and I prayed often for a sign to show me the answer. I was hoping for an actual voice whispering in my ear or something else super obvious, but unfortunately we had to come to this on our own. Now that the decision has been made, and things are begining to fall into place, Josh and I are somewhat surprised to feel relieved to have a plan … ah, He gave me the answer after all, and there will be no looking back. 

Lucy is always beautiful to us. Sadly, we know she won’t “look great” once this process begins, and not for a long time. She will lose her hair, and weight, and possibly have a feeding tube taped to her face if she loses too much. The fluids and medications post transplant may cause her face to swell or hair to grow all over her face. These visual effects will be nothing compared to how she will feel. The transplant process is so harsh, and we are sad and scared for this part of our little Responder ‘s journey. This is her best chance at a cure, forever, so we will carry her through this. 

We don’t know specific details or even a general timeline about Lucy’s transplant yet, but we should have more information by the end of the week. There are many types of and reasons for a bone marrow/stem cell transplant, but often it is for a malignant disease, like Lucy. Leukemia patients, specifically, must usually endure the harshest type of transplant, allogeneic, which means Lucy will receive donor cells. She is incredibly lucky to have several match options. The reason for a transplant is two fold. First, Lucy will get doses of chemotherapy and radiation so high that her body would never survive it without a rescue from new stem cells. This treatment is purposely harsh enough to destroy her entire immune system and, hopefully, any leukemia cells as well. Second, the donor cells will hopefully fight off any stray leukemia cells that may have survived (because this is where Lucy’s body really failed her – not just that she had cancer cells, but her immune system did not fight them). This is called Graft Versus Leukemia effect. 

We are still beginners in this new process of stem cell transplant, so bear with us. It can get incredibly complicated, but it doesn’t have to be. We would be grateful for prayers for Lucy to just “breeze” through this. I am especially praying that she keeps her cheerful, sunny, happy attitude. I am so afraid this process will break her beautiful little spirit – same for Violet.