Having a Forest Day

8 Nov

So clearly I had another hiatus in posting. I just asked Liz tonight if I had posted since our discharge – neither of us could even remember. That seems to be happening to us now that we are both in our forties :). But clearly I hadn’t posted so Oops. Ends up we were at the hospital 14 nights before we got discharged! As I mentioned in the last post she had her port removed and was diagnosed with CMV. That visit was longer by almost a week than any prior visit – and felt like it too. We were all so ready to get out of there!

When we got discharged, instead of her port she had a PICC line, which is a central line that has external access (see pic). So its like a port, but remains “hooked up” outside her arm to a short IV line externally for easy non-needle access. And we needed that b/c we were being sent home with a new treatment for the CMV – twice a day home IV meds. At first we were pretty spooked at the regimen which required uber-vigilance for sterility and took about 1 1/2 hours each time (as though we had a spare 3 hours in our day) but it became fairly routine pretty quickly. If doing home IV meds meant going home, we were all for it. There were a few drawbacks to the new line, like weekly dressing changes (imagine ripping off super sticky band aids off the tender part of your upper inner arm), but Lenox was able to get back to school (albeit a little “riper”than usual, since we couldn’t give her a real bath with the PICC line). We also had to put her swim lessons on hold since the line couldn’t be submerged.

Without getting into too much minutia, after about a month, we scaled back to IV antiviral meds once a day, and then a few weeks ago down to just oral meds. She will need to be on that particular antiviral until the full leukemia treatment ends, as they don’t think her system can keep the CMV suppressed while on chemo. The nice thing about the oral meds is we were able to remove the PICC line, which Lenox was thrilled about. The only damper to the excitement of real baths and starting swim lessons back up (wahoo!) was knowing that without a port or a PICC line, her next visit to the clinic would require an arm IV. Lenox was aware of this as the PICC line came out but as some of you may recall, she was pretty traumatized by the arm IV last July and has not required one since so I was wary.

In the midst of all this, life has been pretty “normal” – Lenox is in her pre-K class and her great school also does music, Spanish and dance during the day. She also does some fun extras of art and soccer a few afternoons a week and gymnastics with her close pal Josie on Saturdays. And of course now she can gt back to swim lessons with Mr. Billy, her swim teacher that she is a little boy crazy over. Her Gigi came and visited which was a nice treat. Lenox had a Great Halloween, having over two pals and their families. We dressed as the family from Brave – Lenox was Merida, Liz was King Fergus and I was the mother/bear.

Then today was our first arm IV clinic day and… I would love to say that it went smoothly, but… it totally sucked. Lenox, understandably kept squirming and saying she was nervous and “terrified” so we couldn’t get the IV into her arm. We finally had to hold her down (5 of us) and she was hysterical. After which she ranted, hit, bit and then screamed at us about what horrible mean parents we were.(who an blame her though?! What other outlet does she have to rage against what is being done to her?) She said she didn’t want any PICC, port OR needles and hated coming to clinic and didn’t ever want to come back ( and never wanted to see us again – she was going to go live in our house and we should go live somewhere else)! So then I lost it, crying but trying stoically in front of Lenox not to look like I was crying. (i know of no women who an successfully hide crying). But I didn’t lose it because Liz and I had just been evicted but b/c it was one of those moments for me where the horribleness of the whole fucking cancer and treatment just overwhelmed me – I don’t want her to EVER have to come back to the clinic either. I HATE that she feels we “betray” her by assisting in this. About 95 percent of the time I focus on the trees which lets me just deal with each day or challenge bit by bit; this seems to keep a good sense of normality for the three of us. But at that moment I emotionally zoomed out to the whole forest view of her leukemia and HATING that our 4 year old has to make a decision between 3 equally lousy, painful scary choices. How is that tolerable for a child or her parents!?

At today’s visit her white blood cells and ANC counts were sky-high meaning her body is fighting an infection, but her lungs sounded clear ( thankfully, because did I mention that a few weeks ago she also had pneumonia? Yes, I shit you not!). Somehow, as we chicks do at time, I had opened the dam and the rest of the time we were in the clinic I was like a faulty faucet and couldn’t stop my eyes from leaking out tears. Way for me to be strong for Lenox (not!)

Oh and moms on the side? Not to continue on with whining (but, its just been that kind of month), but Liz and I have both had bronchitis recently and I also had the flu. Liz is working lots, and loving her job. And I have finally been wrapping up oversight of several Recovery Act programs that I have worked on for the last few years, bringing some great successes and closure with it.

Thanks to everyone for loving us — and reading through a more morose post than usual for me ;). As we begin this month of giving thanks I am indeed grateful for all of you and most importantly for having Lenox snuggled next to me in bed giggling, kissing my eyelids, and clearly having the resilience to have put her clinic visit behind her Man, she rocks!

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3 Responses to “Having a Forest Day”

  1. Trish Morrison November 8, 2012 at 6:03 PM #

    Brooke–Crying in front of Lenox and in front of anyone for that matter makes you human. I have cried in front of Delilah on occasions far less “cry worthy” than what you all have been going through and I make no excuses to her. I tell her the truth and tell her how what’s happening makes me feel. She knows you are strong already. (How do you think she has become so strong herself without her role models?) I cannot imagine — and I really mean this — can’t imagine — what you all go through each day with this disease. It is heart-wrenching to read and to hear. But it is also inspiring because I see that little girl that you are raising and she remains amazing, strong, confident, smart and beautiful. It gives me perspective on the shed tears in my own life. I can’t wait for the day that the clinic visits are only routine checkups. I can’t wait for the day that you tell us you cried because of “normal” things like missing Lenox because you had to go on a business trip, or because you dropped her off at kinder and watched her run to her friends without kissing you goodbye. A mother’s tears are hard earned. We should all embrace them for the love they represent.

  2. Debra Serrins (@Debra_Serrins) November 8, 2012 at 9:04 PM #

    Wow that is really hard. I’m sure that it’s hard when she screams those things (and we parents all go through that but I’m sure it’s way harder for you and more intense). And I get that you don’t want to cry in front of her but you’re also human and just like she can have that hard and terrible day and get mad and say things that are terrible, you can have a day where you can’t handle being as stoic either.

    Strangely, I’m really glad to see this post because I’ve been sort of worried. I’m glad to read this and that it sounds like life is getting back to “normal.” Such as it is.

    Anyway… one reason I’ve been thinking of you is that I’m a regular at the Blood and Tissue Center donating platelets. When I donate they offer me credits or little coupons. Are those of any use to you? I usually just let them slide but if they’re useful to you tell me how I can get you the credits or send the coupons or whatever. You can tweet me or e-mail me at debra.serrins at gmail.com. BTW: This is Debra – we shared our adoption hearing(s) and I work at the REJ.

    Oh and love the Halloween costumes!

  3. Michelle Schreiber November 10, 2012 at 10:39 AM #

    …oh jeez I cry when Gavi won’t sleep – you guys are rock solid, and I always wish that we could do more to help as friends and neighbors…thank you for sharing these posts xoxo

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