Getting to Know the Nadir…and Lenox

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Quote: “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think
about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.” ~Lance Armstrong

Lenox & the Leukemiasaurus: So this week we got to know the practical  of nadir and the immediacy with which Lenox’s condition can fluctuate. In last week’s post the new lexicon word was nadir – the point at which white blood cell counts will get their lowest. For the high dose methotrexate that we had by IV for 24 hours on Tuesday the 13^th, the nadir was 7 days. For those first few days after discharge all went great. But on Monday she threw up and like nadir clockwork, on Tuesday night of this past week, we had our first real moment of questioning whether to take her to the hospital. She was clammy, had chills, was dehydrated and had diarrhea.  More distressing for us, was that she just laid on the sofa limply – awake but disinterested, which is such a departure from her normal demeanor that we couldn’t help but think something was very amiss.

So we took her in – Lenox was not happy about having to go to the hospital on such an impromptu basis, but she was a trooper about it. We were there for less than 24 hours, of which Lenox slept quite a bit; they got her re-hydrated and on a dose of antibiotics in case it was an infection. (Liz has wittily dubbed this  the 10,000 nap). They tend to pre-empt determining whether it is or isn’t an infection and just treat as a precautionary as though it is an infection. I kept questioning whether we should or shouldn’t have brought her in feeling like paranoid first-time parents – were we overreacting?  But each doctor and nurse assuaged those concerns and said it was good we had brought her in. They are fans of erring on the side of caution – a parent could hope for nothing better from their medical  responsiveness.  Lenox was pretty quickly back in the swing of things – good counts, having fun and playing, sassy as ever and giving more and more brilliant jokes and commentaries. She is still into dinos and Harry Potter as much as ever, loves to run around quoting Ron Weasley with a quite British enunciation of “Bloody Hell”, and now is a fan of Grease. She likes to play with her toy horses and one is Sandy and one is Danny. She is getting her days of the week down better and loves to tell everyone than on her next birthday she is turning 14.

On Saturday we attended the CureSearch Walk, which raises funds for children’s cancer research. It was at the Mueller Lake Park. Lenox blew us away by riding her bike all the way over to the walk start (about a mile) and then she rode her bike, ran or walked all of the walk (another 2 miles). She had her face painted, laughed a lot, played with her close friends Delilah and Cooper and some of her favorite grownups. She threw a lovely Lenox-style hissy fit about not being able to get both cheeks painted (the lady could only do one side when she had a line) and then quite stubbornly waited next to the face-painters table in the hopes that the line would diminish (to no avail).  The team Love for Lenox, raised over $7,000 and came in 3^rd place at fundraising. Lenox got a medal and had some great pics taken with the Mayor and the Chief of Police. More than 30 people came and walked with our team – neighbors, classmates, teachers, friends, co-workers – it was so uplifting and heartwarming to know how supported we were, with those walking and so many who could not attend but donated. Lenox had a memorable day and told us as it was winding down, “Can I have another parade tomorrow?” She keeps talking about the donuts and juice and parade today. It was also nice to see all those other families dealing with this same “new normal” but outside the hospital or clinic. We plan on doing it even bigger
next year so plan ahead for walking with us and putting some of your tax write-off deduction toward our great cause :)!

Moms in the Margins: Liz’s Mohawk is awesome! I think Liz will be posting some pics on here from the walk and you will see her awesome new do as well as some of the great photography that she and her friends took. There is a great event called St. Baldricks that Liz is preparing for – it funds promising research for  children’s cancer and supports survivorship activities. Check it out: http://www.stbaldricks.org/ .

I had a weird let-down today from the walk. The joy and excitement of the walk  ebbed and the sadder reality of the day hit me. Nothing to drive home to you being a member of the Cancer Kid parent club than an event like that. While 95% of the time I have now accepted what is happening and am just positive, solution  and about “fighting like hell” to use Armstrong’s words; but today I had a 5% moment where I felt sad again about being in the club and so heart-broken for the families who were there to release balloons, representing their child’s cancer fight lost. I am so proud of Lenox for her wonderful attitude and her resilience, but felt dispirited to be in the position of even needing to feel pride for how fabulously our 3-year old is fighting cancer.

Sobering Statistic: Each year in Texas, almost 1,200 children and adolescents younger than 20 years of age are diagnosed with
cancer. Approximately 200 children and adolescents die of cancer each year,  cancer the most common cause of disease-related mortality for Texans 0-19 years of age.

Kudos and Gratitudes:

Thanks so much to all the walkers and donors for the CureSearch Walk. Thanks for a wonderful event and making Team Love for Lenox such a success!!!!