A Lesson in Sensitivity?

So this Thursday was not a great one for Kate. She is having a lot more tummy aches and nausea with this round of treatment and wasn't thrilled about going to the clinic twice in 4 days for chemo. On Monday she had to go to the clinic for two IM (shots in the thigh) chemo doses. Then yesterday, she went back for 2 IV chemo infusions. (It is no wonder she isn't feeling as well this round). I also think the steroids are altering her personality a bit and that she is kind of sick of the process.
I have to tell a story for a second so that I can vent. Kate is kind of sensitive about her port site anyway but yesterday it seemed to bother her even if nobody was touching it. She complained to me about it hurting her while we in the waiting room but it looked fine to me. It really hurt her when they were accessing the port and she cried. They had a hard time getting good blood flow but when they did things seemed to go smoothly during the treatment. There was no swelling, redness or bruising only pain. When it was time to deaccess Kate, she complained that it hurt again and really started crying. The site continued to bleed for a few minutes afterward and it required the nurse to hold gentle pressure. The nurse really was being gentle but Kate was getting all worked up and began crying harder. The kind of crying where I can't get her to look at me and she goes to another place.
Finally when it was all done, the nurse asked Kate if there was anything that she could do to make her feel better. Kate asked if she could choose something from the prize box and the nurse said no, that those were only if you'd had a procedure. What?! Did she not just ask my child if there was anything she could do? Give the steroid pumped child, post chemo treatment, a freakin' toy from the prize box! I left with a crying Kate and Ava on my hip. The day did get better though. Kate took a 3 hour nap and woke up in better spirits. I just hate to see her go through days like this!

Latest Medications

So the medications have changed quite a bit for this phase so I thought I'd give you the new scoop. Kate is getting 2 different chemotherapy drugs during this phase which, per Dr. Keller, will completely wipe out her ANC. He fully expects to see the numbers below 100 in the next few weeks. We are still praying for good counts and no fevers though! If we are extremely lucky we'll stay out of the hospital. Here is the new list...

Dexamethasone (that pesky steroid) by mouth twice a day for the next 21 days.
Bactrim by mouth twice a day on Mon, Tue, Wed.
Zantac by mouth twice a day.
Vincristine (chemo) IV once a week
Doxorubicin (chemo) IV once a week
PEG Asparaginase (chemo) 2 shots once a month for 2 months
Cyclophosphamide (chemo) IV in 3 weeks
Methotrexate (intrathecal chemo) on day 1 and 29

PS - I'm still using my pill organizer. It is a life saver!

She's Famous!

Today began early for us as we headed to the hospital to begin the Delayed Intensification phase of Kate's chemotherapy. Shortly after checking in, the staff asked Kate if she would please talk on the radio. We weren't aware but The Neal Boortz Show (a nationally syndicated talk radio program) was at the AFLAC cancer center today broadcasting live. They were holding their WSB Care-a-Thon to raise money for the center. Although Kate was a little nervous at first she really did a great job and had fun too. I didn't have any idea how many people listened to that program until I started getting all of the emails and phone calls from friends who had heard her on the radio. Jason's lab tech, Michael, heard her and gratefully called Jason so he even listened as he was heading into work. Kind of a fun opportunity for Kate.

As far as the treatement goes, Kate did the best she's ever done with all of the pokes and prods! She braved the finger poke, eyes clenched shut and teeth gritted but without tears. Kate received IV chemo, Vincristine, and a new chemo drug called Doxorubicin. That Kool-Aid red medicine can make the kids nauseous, so she also had some Zofran, an anti-nausea medicine. Although she wasn't psyched about the lumbar puncture with intrathecal Methotrexate she managed it well and for the first time ever we spent the 30 minutes after the procedure (where they force a drugged child to remain in a flat position to avoid post tap headache) without any fights. Maybe she was extra tired, perhaps they gave her more medication but whatever it was I hope that we duplicate that next time. After the LP, Kate laid on her back and even slept for part of the time. It was heaven. When it was all over Kate had had it though (understandably so). Her patience was gone and she was a little grumpy. Neal and Belinda had wanted her to talk after her treatment she wasn't up for it and we didn't push our luck. Here are a few more shots of her moment in the spotlight.

Kate and Belinda Skelton. Kate wasn't shy at all and hopped right up on Belinda's lap when she asked Kate to. They totally bonded. Belinda is trying to hook her 5 year old boy up with Kate.

Kate really got into it by the end. She put on the headphones and was moving the microphones all around. At one point, Neal got up and she took his seat!

Plugging Along

Kate had her last appointment in the phase of Interim Maintenance today. Her blood counts were good with an ANC of 1300 and hemoglobin of 12. Her cough finally seems to be slowing down and she really feels quite well.
Next Thursday begins the next heavy duty phase of chemotherapy called delayed intensification. Doesn't the name alone make you cringe? It makes me tense up for sure! This phase will last for 2 months. So next week we will kick start things with a rousing lumbar puncture with intrathecal methotrexate and IV chemotherapy. Then I'll basically let Kate do whatever she wants for the rest of the day. :) She will definitely have earned it!

TNT Kick-Off

Last night Kate and I went to my first TNT (Team in Training) meeting for the Disney Marathon. Kate as the team honored hero and I as a lowly runner. It is hard to come up with the words to describe how amazing the night was. A cancer survivor spoke to us, truly speaking from the heart about how research and new medications saved his life. I am sure that every person in the room was moved by his personal story and the realization that every blood cancer patient has their own story too.

The TNT staff asked me to bring Kate to the meeting so that our team could meet her and she loved every minute of our 2 and 1/2 hours there. The coach, coaching assistant, mentor and team captain were so amazing with Kate. They dressed up in Disney costumes, played games with her and generally spent the entire evening getting to know her. Barb (Tinkerbell) also gave her a "magic wand" and taught her how to use it properly to ensure the her wishes would come true. (Word has it that Barb is making sure that Kate's wish for her own Minnie Mouse dress comes true). Seeing Kate surrounded by complete strangers who were all pulling for her and for so many others with leukemia brought tears to my eyes.

If I was excited about the race before, I am ecstatic now. In other news, I have found out that if anyone else wants to run the marathon or 1/2 marathon at Disney they can train with any local TNT group and run with our team on race day! Would that be a blast?!!!! I'll take as many of you as I can get. I'll also take your donations but don't worry I'll be hitting you up for them shortly. :)

:)

Kate and Tinkerbell, (Barb) my coaching assistant. They have already totally hit it off.

All of the crazy Disney Crew! I think

that it will be nearly impossible NOT to have fun with these ladies.

Kate was totally spoiled with a massage. Cutest thing in the world to see. Who knew a 5 year old could appreciate something so luxurious!

Kate's Port

Kate likes to tell everyone about her port. She'll go up to complete strangers and ask them if they want to feel her port. It is kind of a sensitive spot and she tells people to "be gentle". Still, many of our friends and family don't know what exactly the port is. Here are a few pictures that help I think.

The one on the left was taken a couple of weeks ago when they were looking for pneumonia. The port is the round circle on the upper right chest wall. You can notice the white tubing going up and over to the left. It enters directly into the heart.

The picture of Kate on the right shows a surgical scar above a little bluish bubble. That bubble is the round port. This is where they put a needle through each week for blood draws and chemotherapy.
If you see Kate, you can ask her to feel the port (if she doesn't ask you first). It is pretty cool.

Our Kindergartner

So I can't believe it, but our little Katydid started kindergarten today! She hopped out of bed and couldn't stop talking about how she wanted to meet her teacher, Mrs. Law (though she's met her dozens of other times already). She was equally excited about her new Hello Kitty backpack and lunch box (thank you Grandma Hansen).

Kate was so happy to see that she had several friends in her class. She knows Riley, Andie, Rachel, Lydia and a few more that I can't remember right now.

Her highlights of the day were eating in the cafeteria, seeing Jackson in the hallway and playing at center time. I hope that this is a good year full of positive experiences for Kate.