Treatment Update: Days with my Four Year-Old…
November 22nd, 2008 | by Emily | See all Treatment Update entries | 10 Comments
When I was working full time at Chewonki I sometimes dreamed of staying home with Maddie and growing our own food on our own land, though it always seemed like an unlikely scenario (to say the least.) Now Maddie and I spend most days here at home while mom works off the farm to keep us afloat.
The new schedule in our lives seems to suit us both very well, but we sure do have our fair share of battles. For better or worse I see much of Emily and myself reflected in Maddie’s many personality quirks. She is a chatterbox, full of energy and determination to make her way my way as well. For the moment, Maddie’s world revolves around Maddie and little else. Was I like this at age four? I know at least two people who would answer with a definite “Yes!”
Needless to say I spend much of the day trying to strike a balance between pushing my own agenda and allowing Maddie to do the same with her priorities (of which there are many). In the early days of her sickness and treatment I frequently attributed a particular behavior (particularly the not so endearing moments) to her medication, her tiredness, the side-effects of her meds and treatments–on everything except the natural tendencies of a growing four year-old. More and more these days I see her behavior for what it is, and I am less likely to blame her sickness or her meds. I think this realization on my part makes our time spent together less likely to end in frustration, tears, and time-outs.
Physically, Maddie is doing great. Other than the same cold that all the kids at preschool are fighting off, she feels good. Her hair is now long enough to put a clip in, which she loves. It appears to be coming back in with about the same color and curl she had before she got sick. Folks meeting her for the first time do not usually know that she is still in treatment. That is, unless their kids play doctor with Maddie and she trys to give little Scott and Julie chemo treatments, a lumbar puncture, and a blood transfusion. Boy have we had some funny moments with those parents we just met…
Maddie loves this time right after treatment when she knows that we don’t have to access her port for two whole weeks, and today we are waiting for a friend from Maine to come visit. Life is good. At the moment Maddie and Star (our one-year old Border Collie) are playing fetch in the dining room with a tennis ball. I will hope for the best!
November 22nd, 2008 at 7:37 pm (#)
Love picturing all these new experiences! Can’t wait to see you both in a couple weeks. Love to you all – Caroline
November 23rd, 2008 at 6:41 am (#)
Brad – you have found your calling! What a wonderfully written view into the world of a four year old! Your positive and insightful appreciation of her world and the ‘intrusion’ of her treatments are so touching and heartwarming. We are just so glad to hear that Maddie is doing so well – and how important a little thing like hair clips can be.
Have a wonderful Thanksgiving to all of you – we miss you in Maine!
Lee and Olivia
November 23rd, 2008 at 8:41 am (#)
You have a lot to be thankful for! I enjoy reading the updates. Happy Thanksgiving to you, from those of us in Maine. Tell Emily that I did my first triathlon in So. Berwick (The Pumpkinman Sprint in 1:43) and felt Bill’s spirit with me the entire way. Hugs to Maddie.
I wish you well, Kathy
November 23rd, 2008 at 4:41 pm (#)
So glad to hear about life in VT.
We will invite ourselves soon!
Oliver turns 4 in a month, but we’ve been going through the battle of wills for a year already! Girl vs boy? or stubborn vs. stubborn? Clint and I took this enlightening teacher/parenting class together last Spring called Conscious Discipline (google Becky Bailey, Loving Guidance) and as soon as we stopped believing we could get anything done with Ollie around (who knew?) and give him the connections he was looking for, he threw fewer tantrums. Remembering to feed him and put him to bed helps, too.
love you all,
Ellie
November 25th, 2008 at 11:22 am (#)
Glad to hear things are going well and that Maddie is getting healthy. Have yourselves a great Thanksgiving!
November 26th, 2008 at 3:40 pm (#)
Ah, hair clips. What a lovely little indication of progress.
Miss you guys! How’s Star doing? Would love to compare border collie notes with you sometime.
Happy Thanksgiving to you all!
November 28th, 2008 at 8:33 am (#)
To God be the Glory and Praise for the trials He has and will continue to sustain Maddie and you through during all these challenging and difficult times. She will be a great resource for caring for others one day in the victories she experiences in her own life and she will remember the support of both of you through it.
A father’s love for his daughter makes an incredible impact on her self-esteem and it looks like you too are a famous pair. May the Lord richly Bless you and keep you cradled in his everlasting loving arms, a refuge for all of you in which to hide under the wings of His protection. You are in my prayers as always.
Numbers 6:25-27
25 “The LORD bless you
and keep you;
26 the LORD make his face shine upon you
and be gracious to you;
27 the LORD turn his face toward you
and give you peace.”
January 18th, 2009 at 7:48 pm (#)
I just wanted to let you know what an incredible inspiration you all are. Thank you for demonstrating the incredible strength and resilience that is possible in the face of true adversity. My thoughts are with you and Maddy and I wish you all more moments of happiness and the wonderful normalcy of being four years old.
Hilary Best (MCS XXXI)
March 11th, 2009 at 4:59 pm (#)
I am so glad that those kids are o.k and hope that they will be in the future it really hurts me to see such little kids have to suffer and their familiies having to watch with nothing that they are able to do to heal their young like when your kids get a boo boo you can kiss it and evetually it will go away but you cant kis leukemia away. when i am out of highschool and graduate from college i will be in the medical field and i will try my hardest to find a cure for childhoodleukemia that ia affective i promise…… till next time
Isabella
May 2nd, 2013 at 4:42 pm (#)
‘Topically, the best thing on the market is Rogaine, or minoxidil, used twice a day, indefinitely. As the tension from the balloon increased, the scalp relaxes as new, hair-bearing scalp grows as a result. Used in detecting abnormality in the thyroid including thyroid disease.