This week we didn’t have to go to the clinic or the hospital for treatment. We did have to draw Maddie’s blood to check her blood values. We are primarily looking at platelets, hemoglobin, white blood cells, and neutrophils. One of the most important pieces of information that we gather from these values is the Absolute Neutrophil Count (ANC), which is the true measure of Maddie’s body’s ability to fight infection. The platelet and hemoglobin values must be monitored closely, because if they were to drop below a certain level, a blood transfusion or platelet transfusion may be necessary. Maddie has a “port” (also called a Port-a-cath or Medi-port). It is an implanted, subcutaneous venous access device that was placed during a surgical procedure and will remain in place for the duration of Maddie’s treatment.
What this means is that Maddie doesn’t have to get an IV line placed every time she requires IV medication. It is really pretty slick. After having so many IV complications during our first days in the hospital, the port has proven to be a godsend. When we access the port either for a blood draw or to administer medications, Maddie calls the process “putting tubey in”. When she needs a blood draw, Brad and I access her port at home, draw the blood, and then run it to the lab at the hospital. I guess being a nurse is coming in handy here.
About 45 minutes before we “put tubey in” we put lidocaine cream on the site of the port (just below her left clavicle, see photo). The lidocaine serves to numb the area (although I think Roger Clemens received his “lidocaine” injections for a different reason). Maddie has gotten very comfortable with the whole process, although it does still cause her some stress and is still scary for her. She always sits in Brad’s lap and I access the port and draw the blood. For some reason, this morning the port was being quite finicky and we could not initially get blood return. We’ve learned some tricks and trouble-shooting techniques from the folks at the clinic (Thanks, Jay!), so I put all of them to use this morning to get the blood draw. Sometimes, the issue is merely one of position, so I had Maddie lift her arms above her head, then stand up, then standing up with hands above her head, and finally blood return. Yippee!
I was afraid there was a clot in the port that would prevent the blood flow. If that had been the case, we would have had to go to the clinic for a clot-buster (tPa). Maddie was extremely patient and cooperative throughout the entire process, but she did become nervous and scared when it took longer than usual. Brad and I were both stressing out inside, but tried to remain cool on the outside. All three of us let out a huge sigh of relief when the blood filled up the tubes. Then, Maddie and I ran the tubes to the lab at the hospital. Hooray!
One other thing I wanted to mentioned about an aspect of Maddie’s treatment is that the clinic has a wonderful program for the kids called the “beaded journey”. It is a strand of beads that the kids accumulate as they journey through their treatment. The social workers meet with us during each visit to add a new bead to the strand for each test, medication, or procedure.
Each bead has a special, significant meaning. There are also beads on the strand for family members, holidays, etc. Maddie loves hers. I’ve included a few photos of her beaded journey. You can see it’s already pretty long.
January 24th, 2008 at 11:54 am (#)
Dear Emily, Brad and Maddie,
We are so impressed with your wonderful project! It is truly spectacular! I have cared for kids with leukemia and families like you during my nursing career. It is not for the faint of heart.
Recently, Genevieve gave me a book by Kate Braestrup who is a chaplain for the Maine Warden Service(maybe you know of her). She talks about crisis…When it hits…” your life… will swing suddenly and cruelly in a new direction with breathtaking speed, and if you are really wise… you will know enough to look around for love.It will be there standing right on the hinge, holding out its arms to you. If you are wise, whoever you are, you will let go, fall against that love, and be held.”
You are indeed wise because in true Johnson fashion, you are giving as much as you are getting. I hope you feel the love every minute of every day.
We are thinking of you every day and wishing both girls 100% success with your trials!
All our love,
The Reder Family
January 25th, 2008 at 1:19 pm (#)
Dear Maddie, Brad, and Emily,
Hello from from Nick’s mom and Ben’s Nana. Nick and Ramey sent me an Email and told me about your “twotrials” and I so hope that my love and hope and prayers reach you up in the cold North East.
I am in sunny Tampa but will be back in Williamsburg by the first of February. Send me the address and I will send a check for the fund raiser. If there is anyting, anything, I can do to help you or your family I’m in.
I have so many happy memories Brad, of you and Nick, and your mom and dad.
Very best wishes,
Nancy
January 25th, 2008 at 1:30 pm (#)
Hi Emily. A friend of mine, John Rolfe, told me about your effort and website.
Just wanted to drop you a note to hopefully give you some encouragement. My own son Peter went through what Maddie is now going through. There were certainly some very tough days, but Pete today is doing great. He is now 13 years old, 2.5 years post-chemo – and a runner! He has run Beach to Beacon, the Maine Marathon Relay twice, and a smattering of other races. The last two falls he also ran for his middle school cross country team.
We’re also big fans of the MCCP. Anyway, good luck to you, Maddie and your family. While there may be ups and downs along the way, you will reach the finish!
February 3rd, 2008 at 4:54 pm (#)
Emily, Brad, and Maddie –
I am your neighbor, co-worker, and friend…I see you all everyday but this website still takes my breath away. Your desire to return to normalcy, as much as possible, has been a success from my point of view. Your sense of calm and taking every day in stride is more than admirable and translates to those around you (me, specifically). I am amazed, but not surprised, at all that you have accomplished while juggling the demands of getting through a day.
My love and support to you,
Margaret
April 11th, 2008 at 1:41 am (#)
I’m a person, who knows what she wants. I’m not the one who has a lot of free time to write comments here and discuss stupid and silly news, like you do. It’s so funny that you all take it seriously, start thinking about it and so on. I would never spend my time on such stupidity. I just want to say that there’s a real word, where you can spread rumors and argue. Why are you doing this online? You look so funny!