November – lots of tidbits and News

17 Nov

Lenox Slaying the Leukemiasaurus: Yeah! We are on the tail end of hospital visit 5 – one more left before Consolidation phase ends! Lenox is hanging tough; she had vegged out a good bit, had a good time in the playroom and painting and been watching Deathly Hallows II. Yesterday one of the Child Life Specialists took us down to a special play room used for medical play and trainings. It has an ambulance, mock OR, all in kid size where they can role play, etc. Really neat set up and I think it was helpful in that it gave her another way to process her experiences without having to talk it out with an adult or having to be in the “patient” mode.

As some of you know, prior to Lenox’s leukemia diagnosis, We had been aware of, and starting some therapy for, Lenox having some vision problems and possible retained reflexes (attributed generally to neurological issues). They were nothing terrible and things she was doing a great job of compensating for, but that with therapy could make things easier for her. We mentioned this for the first time to the oncologist this week. She said that with most of their patients, because of some of the long term effects of the chemo drugs, they do a comprehensive nuero-psych assessment and then make appropriate referrals to work on things as they exist now, or arise, to hopefully limit or mitigate the nuero-psych impacts on her long term. So looks like we will do that in January and begin any prescribed treatments during the two-year Maintenance phase. We were relieved to hear they do such thorough front- end testing on this.

The last week or so I think Lenox really realized for the first time that her hair is short. She asked me about a week ago to put ponytails in her hair – and she wanted lots of them! My heart fell – did she think she had enough hair for that? If she didn’t know it really yet, should I tell her? She handed me these bigger hair bands we had used as her hair was longer. I persuaded her to at least use the teeny tiny bands we used when she was a baby. Even so, only two teeny little ponytails were possible. When she asked for more, I put her bangs up too. She cheerfully grinned in the mirror and showed off her hair to LaLa and didn’t seem phased at the time about having just 3 wee ponies. I didn’t bring it up further. But a few days later, out of the blue she said “it’s taking my hair so long to grow back” — I didn’t have the heart to tell her how long it will be short (and we don’t really know).

She also has thought far enough out into the future to have realized that at some point her implanted port will not be there. She has been asking a lot about when it will come out and how it would be taken out. I think she was realizing that to get something out that is under her skin, we will have to cut her skin. So we had to explain that at some point – maybe when she is 6 yo – we will have a surgery and described it a little. We pointed out the scar where they had made a “pocket” when they put it in and that she had been fully asleep. We said later it would be the same – she would be deep asleep where she wouldn’t feel anything and they would just use the pocket again to take it out. So stoic as she just listened and then sat quietly thinking about our answer. I am certain this will come up more.

We have been doing lots of great fall / turkey arts and crafts and made gingerbread dinos the other day. Lenox has also gotten very into wanting to learn to read. We bought her the first set of Bob books and she has read the first two! She loves to sit in front of books on her own and re-tell the story from memory and say she is reading by herself. We have been getting ready for Christmas a little by planting the seed that an elf is coming this year. We bought an Elf on the Shelf and will start it up the day after Thanksgiving. She is excited. She has also taken a stack of flags and a sharpie and is very methodically reviewing the catalogs that come in the mail – flagging pages and circling items. I have to say that while I am sure this is teaching some lessons we shouldn’t be encouraging, I was surprised to see her being very thoughtful and contemplative – flipping between pages and picking only her most preferred. She would take some flags off as she found others she liked better. I like that she somewhat naturally has created some type of limit!

Some of Lenox’s recent funny moments:
* While going through clean laundry she pulls out Liz’s bra, puts it on with the cups on her back and says “look, Lala, its a back pack”
* as many of you know Lenox doesnt like many of the medical staff coming in over and over and bothering her. Today a nurse came in, said she just needed to check her port, which Lenox showed her, the nurse touched it once, nodded, no small talk and left. As she walked out Lenox said: ” what was her name? I liked her alot”.
* we bough ceramic reindeer salt and pepper shakers and Lenox likes to play with them (they are empty). She broke the head off of the green one. The red one, unbroken, was next seen dramatically wrapped in tons of scotch tape. When we asked why, she said that would keep it from breaking like the other one. Nice preemptive idea instead of being more careful!

Moms in the Margins: thanks to Liz’s motivation, we are both doing the “couch to 5K” training program. Liz does it more diligently than I do and I have been so proud of her and impressed with her commitment. We have a slate of 5K’s and other runs identified to keep us motivated. Lenox is very into “exercising” and serves as our coach, most usually riding in her stroller, but occasionally also running. Otherwise, things we do are typical to all families at this time of year – planning thanksgiving, buying holiday gifts, getting out decorations, enjoying the changing weather, etc. As we get closer to January, where Lenox transitioning back to school at least partially, I had started thinking more about how to relay to the teacher so much information and considerations about treatment issues, what to watch for, etc. Of course, when I mentioned this to our wonderful doctor, she allayed my concerns. The clinic at Dell deals with it all the time and they actually come meet with the school and teacher for just that purpose – to share info and areas of concern or special need issues that might arise. That was a big relief. As you may recall, Lenox’s school has been amazingly supportive and I am so grateful that she has such a great community to return to and to be reminded that there lots of professionals who are “experts” on how to help Lenox as a student too.

I feel I am constantly aware of how blessed we are. I know I share about that often – great friends, family, employers, etc. A few weeks ago a friend of mine used the adage “everything happens for a reason” and we just don’t always know what it is. She pointed out that the reason may be bigger than us (our nuclear family) because just through knowing about Lenox it had helped her be more grateful for the health of her kids. She said that if many of our friends and acquaintances had the same reaction she did, then that was a big impact in helping others keep focused on gratitude and what was important in life. Essentially “I realize I am blessed b/c I know how hard what you have been given is”. I wasn’t offended by this and was actually appreciative to hear her view of it. Interestingly, yesterday I met a family here that I had so much empathy for and also gratitude that we were not in their situation. They are here with a 5 month old, with multiple intestinal and ovarian tumors – her tumors are rare enough that after surgery, biopsy and being here a week they still have no diagnosis of what cancer she has. They have a 3 year old at home, live almost 2 hours away AND are teen parents. I was so overwhelmed by them – they were friendly, engaged, mature and direct. The little girl’s name – for those who may want to pray for her – is Payton. She was actually very smiley and inquisitive and seemed to not be in discomfort.

One last thing of interest is that we are meeting with the wish-makers this Saturday from the Make aWish (MW) foundation. I should immediately address the misconception I had about them, b/c you may have it as well. I thought kids only got wishes if they had terminal illnesses so when the clinic mentioned it, we were like “oh no way our girl is not terminal”!!! But the program is for kids with life-threatening illnesses, NOT terminal illnesses. Once that sunk in (thank you Courtney for that conversation!) we thought we would at least check it out. So we will keep you posted.

Kudos and gratitudes: I have finally been sitting down to write thank you notes, and I am just overwhelmed again by everyone’s support! I am daunted by the sheer volume of notes this entails: ) but glad to be sitting down and revisiting how broad our support network has been from the very beginning.This time for the blog, while there are many friends and family who deserve perpetual thanks, I wanted to specifically shout out thanks to two of our immediate neighbors:
* to Stephanie and Julie (ak the Chalkasaurus) who left a cute note for Lenox on the porch with two buckets of chalk (cool!) and for putting out our garbage and recycling every week, and
* to Michele and Sadie for being ever-nearby and for rushing out for a plunger when we had a houseful of people!!

We love you all!

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