Treatment Update: Grilled cheese, doughnut, and a bagel
April 1st, 2008 | by Emily | See all Treatment Update entries |
Yesterday, as Maddie and I got out of the car and went inside to have lunch, here’s a synopsis of how she described what our afternoon would entail, “So, first we’ll put the cream on.” (Lidocaine-based EMLA cream that we put on her chest where her port is before accessing it. We usually leave it on for about 45 minutes.) “We’ll have lunch and then put tubey in.” (Accessing her port by inserting a 3/4″ Huber needle which is attached to IV tubing into her port.) “We’ll go to clinic. I’ll get to see Daisy. I’ll get medicine through my tubey. I’ll be very brave, and you’ll be with me the whole time. Then we’ll take the sticky part off and take tubey out. I might get a sticker or something from the ‘ouwey’ box.” (She got IV vincristine and doxyrubicin through her tubey. The sticky part is the Tegaderm tape that we use to secure the “tubey”. She hates it when we take the Tegaderm off. In fact, removing the tape is the most stressful part of the entire experience for her. The clinic has a box of little toys from which the kids can select something after treatment.) “Then, we’ll get to go get a snack - maybe a grilled cheese, doughnut or a bagel.” (That’s the steroids talking. Food is always at the forefront of her mind these days.)
I’m constantly amazed by how articulate Maddie can be about her treatment. This dialogue enables her to process exactly what is going to happen before she goes to clinic; she can work though it in her mind and we can talk about any parts that are worrying her. The familiarity and understanding of everything that will happen makes the entire experience less daunting for her.
On the way home, she was completely focused on the grilled cheese. I was bumming that there was no drive-thru grilled cheese restaurant as it was already 5:30pm and I wanted to get home; at the same time, I wasn’t about to deny her a grilled cheese after she had an afternoon of chemotherapy. By the time we got to Brunswick, however, she was vacillating between a doughnut and a bagel with cream cheese. She finally opted for the glazed doughnut, which she devoured in a few bites.
So far (knock on wood, cross your fingers), our 21-day stretch of steroids has gone well. Maddie’s spirits are good, energy is high, and sleep is actually fairly normal. Her appetite has increased and she talks about her next meal immediately after finishing the previous one, but at least we’re not having to use our skills as short order cooks at various intervals throughout the night. We are still preparing ourselves for Maddie to turn into the steroid crazed child that we saw in December, emotionally labile and with an appetite like “a truck driver.” The effects of the steroids tend to be cumulative, so I suppose you could say that the worst is yet to come! We joked yesterday that the timing sure is great (not!) as these are the last few weeks leading up to the Trials. We feel like we’re entering the final stage of some cruel test. (It’s the “can you make it to the starting line of the Olympic Trials and care for a child on high dose steroids and a handful of chemotherapy drugs” test? It’s not a test I ever envisioned myself signing up for.) As optimists, however, we can see the light at the end of the tunnel - only 14 more days of steroids and 19 days until the Trials.
April 1st, 2008 at 2:03 pm (#)
Hey It’s just us checking up and hoping that everything is going GREAT with all of you.
Best Of Wishes
Crystal and Savannah
April 1st, 2008 at 2:29 pm (#)
Hi everyone,
Jamie came home from a science seminar yesterday at the Boston Science Museum and suggested I email you about blackberries. He said blackberries have been proven to be beneficial to kids with leukemia. Have you heard about this? Time for blackberry shakes!
We are thinking about you every step of the way along your incredible journey. Remember, if there is anything we can do for you and your family at any time, please feel free to call us! We are here for you.
~Kolleen, Jamie, Caitlin and Conor
April 1st, 2008 at 9:02 pm (#)
Hi Emily and Maddie,
Dylan’s Nooni and Papa send you our love and prayers that all will go well through these challenges that you both face (and Brad, too!). We think of you every day and are so inspired by your updates! Keep up your amazing strength and focus! We know you can do it!
With our love,
Polly and Dan Morgenstern
April 1st, 2008 at 10:53 pm (#)
Thank you for this website. Your family is an inspiration, and I wish you the very best of luck. I heard about you through an old friend who’s a teacher of Angela Baglione’s at Milton. All my very best, and thanks again for writing. I’ll submit my donation ASAP.
April 2nd, 2008 at 6:56 pm (#)
I know another little girl, named Sara, who looked remarkably like Maddie at this age, and one day her mother told her that her dad had leukemia. She didn’t understand the word and thought her mom had said zucchini.
Well, it caught on immediately, and now thirty years later, friends and family of Mary Jane Hulin and Sara still call it zucchini.
It of course is my favorite vegetable.
allan potter
April 2nd, 2008 at 7:07 pm (#)
[…] few weeks before the marathon trials. Nor do I want to risk getting Maddie sick as she goes through another round of chemotherapy and steroid treatments. That being said, if anybody that does go is interested in taking some notes, video, audio, or […]
April 3rd, 2008 at 11:52 am (#)
Hey how are you doing? I hope your okay. I feel so bad about what somebody wrote you from my school!!! Im so sorry anybody would ever do that.
April 3rd, 2008 at 12:27 pm (#)
:p hey this hunter i hope maddy gets better it was cool meeting you
April 3rd, 2008 at 12:29 pm (#)
Hope Maddie gets better soon
April 3rd, 2008 at 3:12 pm (#)
Hi, thanks again for coming to BMS, i hope the person who said that bad thing gets caught, they probably will, the security on our school laptops is very very tight, so they will probably be caught.
April 3rd, 2008 at 5:31 pm (#)
Hi Maddie! Hey Emily! Hope your feeling well, Maddie! Emily, I’m really rooting for you, so keep training hard! \
-Clare
April 3rd, 2008 at 8:39 pm (#)
Great entry, Emily! I love chekcing in on this site and reading about how it’s going. Thinking about you guys and rooting you both on!! -Libby Nelson