Two Trials

I guess even therapy dogs get a break every now and then. When we showed up at clinic today, Maddie ran up to the reception desk to greet Daisy. Her familiar crate and Santa chew toy were there, but we soon learned that Daisy was on vacation. I had visions of that curly labradoodle sipping an umbrella drink on some sunny beach somewhere, and I thought it didn’t sound half bad. Smart dog, escaping the cold Maine winter for some much deserved R & R.

Maddie took Daisy’s absence well; she quickly followed Lauren in for her check of vitals and then to our treatment room. As we were about to enter the yellow room, Maddie exclaimed, “Oh I forgot my beaded journey!” Yes, indeed, we had forgotten to bring her growing strand of beads that represents her journey through her treatment. “No big deal!” she continued. “We’ll bring it next time.” We chatted with Liz, our social worker, and Bambi, our nurse. Dr. Eric came in to assess Maddie and see how the last couple of weeks have been going. My biggest concerns have been related to disturbed sleep patterns, some leg pain, and eating issues. So, we worked on tackling those issues. Maddie was due for 2 intramuscular injections of a chemotherapy medication called PEG-Asparaginase. She’s had this injection several times previously and we talked about the “stick” before coming today. She said she was scared, but said she would be “brave”. I had put a copious amount (in other words – way too much) of EMLA cream on her legs where she would get the injections, and Bambi and Jay administered the medication with ease. Maddie was “brave” and I was proud of her. We had to hang around the clinic for 30 minutes after the injection to observe for any possible allergic reaction. Maddie pulled a rolling toy around the clinic making enough noise to disturb anyone who was working, but everyone dealt graciously with the ruckus. She was excited on the drive home to tell her Daddy how well she did at the clinic today.

When we arrived home, we received the latest update from the MCCP Development Office about the fundraiser. We’ve already raised over $13,700. Way to go Two Trials and all of its amazing supporters! Step by step we will reach all of our goals.

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.

This week, Maddie began the third phase of her treatment for Leukemia. We have completed the induction phase (28 days) and the consolidation phase (28 days). Now we embark on the interim maintenance phase, which lasts 50 days. This phase does not incorporate any new medications from the previous two phases, but the frequency and route of some of the medications does vary. The standard medications for this phase are vincristine (IV), dexamethasone (the dreaded steroid) (by mouth at 2 separate 5 day intervals), mercaptopurine (a.k.a 6MP) (by mouth every day), and methotrexate (by mouth and intrathecally).

On Monday, we went to the clinic in Scarborough where most of Maddie’s treatment takes place. When she requires a lumbar puncture (spinal tap) or another procedure that requires anesthesia, we go to Maine Med. in Portland. We traveled through a great snow storm which left us with a foot a fluffy, soft snow. Once we arrived at the clinic, we were greeted by lots of smiling faces, especially the smiling face of Daisy, the therapy dog at the clinic. Daisy is a labradoodle. I had never seen one before I met Daisy. She’s a cutey; she’s tall and has white, soft, curly fur. Maddie absolutely adores Daisy. In fact, early on in her treatment, Maddie was very nervous about going to the clinic and the prospect of playing with Daisy was the only way we could get Maddie to go inside. A couple of times Daisy even got on the scale to show Maddie that it was not scary. Maddie gave Daisy a squeaky Santa chew toy for Christmas, and it was fun to see that it is still among Daisy’s stuff behind the desk at the clinic. Read the rest of this entry »