Two Trials

Yesterday, Maddie was able to continue her treatment; her blood levels had stabilized from the dip last week.  Maddie was scheduled for a lumbar puncture (LP) at 10am at Maine Med.  The LP requires that she be NPO (nothing by mouth) after midnight on the day of the procedure.  Maddie has had several (5-6) of these LPs; she knows the drill.  The night before the procedure, we talked about the test and not being about to eat until afterward.  We usually dream about what we are going to have afterwards and it commonly includes french fries and ketchup.

At around 3am, she woke up sick to her stomach and vomited in her bed.  Brad and I quickly whisked her up, threw her in the bath, changed her clothes, and put new sheets on the bed.  Fortunately, she was able to fall back to sleep; however, she awoke in the morning feeling lethargic and still a bit nauseated.

We needed to “put tubey in” before we left, as she tends to do better if Brad and I access her port, instead of having someone she not familiar with at the hospital do it.  You see, when we go for LPs, we go to the Day Surgery Unit of Maine Med, so we often see different nurses and anesthesiologists each time.  One of the doctors or Chris, the nurse practitioner, from the Maine Children’s Cancer Program always perform the LP, which helps make Maddie feel more comfortable.

She slept the entire way to the hospital, only waking when I turned the satellite radio from the kids station to the Big 80s.  At the hospital, Dora couldn’t even raise her spirits; I knew she was feeling pretty crummy.  Chris and I talked about how she was doing, her stable lab values, and we ultimately decided to go ahead with the procedure.

The purpose of the LP is twofold; a sample of the cerebro-spinal fluid (csf) is removed and analyzed for the presence of “blast” cells, and she receives chemotherapy (methotrexate) through the LP into the csf.

She awoke very thirsty in the recovery room with Chris, Mary (her nurse), and me by her side.  She chugged down lots of water, but was still a bit nauseated.  We decided to give another anti-emetic (aka - anti-vomit medicine) before we hit the road.  She did want to stop by the cafe for something to eat, but, when her cheeseburger and french fries arrived, she didn’t touch it.  We packaged up the cheeseburger and I stuck it in my bag; I was just imagining how tasty that would be several hours down the road (yuck!).  When we got to the clinic, Daisy’s radar drew her right toward the bag and the cheeseburger.  Before I knew it her face was nuzzling open my bag. We managed, however, to stop her before she ate my bag and the cheeseburger.  Maddie perked up as she got to feed Daisy a few treats.

“Finding Nemo” was Maddie’s movie request du jour, and she slowly perked up as the movie went along.  While we were meeting with Dr. Rossi or Jay, she would interject, “Oh, watch, this where Nemo gets caught in the net” or some other movie play-by-play.  Maddie received chemotherapy (vincristine) through her port, and Jay gave us our new supply of oral chemo meds (methotrexate and 6MP) and our schedule for the next several weeks.  It was a long day, but ultimately we were glad that Maddie got a good report and that her spirits had risen as the day wore on.

This morning, I “put tubey in” and drew Maddie’s blood.  Since Brad was out of town at a horse logging extravaganza, we asked Abby and Margaret (thanks!) to hang out with us during the procedure.  Maddie did great.  We headed off to the hospital, and Maddie marched in and handed her blood tubes to our friends in the lab.  On the way out, she procured a collection of stickers both from the lab and the registration desk.  I promptly found my jeans covered with images of Dora, Diego, and other assorted cartoon characters.  A couple hours later, we got a call from the clinic saying that Maddie’s scheduled lumbar puncture and chemotherapy treatment for Monday would have to be pushed back, as some of her blood counts were too low to proceed with further treatment.  It seems that the cold and cough that she has been battling has dropped her white blood cell values, and it’s amazing how quickly it can happen.  On Monday, when we were at the clinic, her white blood cell count was 3.5, which was the highest it had been since her diagnosis, and her absolute neutrophil count (ANC - the true measure of a person’s infection finghting ability) was 3050, which was the highest value since her diagnosis.  Well, today her WBC was 1.6; it hasn’t been this low since late November.  Her ANC was 416.  In order to proceed with treatment, her ANC must be over 750.  Cyndi, one of the nurses at the clinic, compares the ANC to the “little soldiers” that actually fight off the infection; Maddie must have used up most of her “little soldiers” fighting off that cough and cold.  Now, we play a bit of a waiting game.  We’ll redraw blood on Tuesday or Wednesday and see if the number of “little soldiers” has increased.  I was struck today by how smoothly I felt we were cruising along and how quickly roadblocks can appear.  The next few days concern me as I know she is so susceptible to illness, has little ability to fight things off, and any infection would lead to a hospitalization.  So, we’ll remain vigilant and optimistic that those “little soldiers” will respond.

Some days when I wake up, I’m just never sure where I might end up at the end of the day. Luckily, today in the end, we ended up at home looking forward to sleeping in our own cozy beds. Maddie has been a little sick (aside from the whole leukemia thing) since last Wednesday with a cough and some cold symptoms, but no fever. After a call to the clinic on Friday, we decided to watch and wait to see how things progressed. As you can probably imagine, fever and infection for someone in an immunocompromised state are not a good thing. She had an OK weekend, but the cough and cold symptoms have persisted. Today, she awoke lethargic and feeling worse. We kept her home from school, and, when I took her temperature, the number 101.9 blinked from the thermometer. A quick call to the clinic confirmed that the outlook for our day had now changed. We were to scurry down to the clinic for blood cultures, CBC, type and cross, and IV antibiotic (Rocephin). Jay advised us that it could be a quick trip or, if her blood values were low, a stay in the hospital could be in the cards for us. So, as Maddie dictated which treasures she wanted to bring with her, I threw together an overnight bag just in case we ended up in the hospital. “Why are you bringing your running stuff, Mommy?”, Maddie queried. “Wishful thinking,” I thought to myself. I figured that if we ended up in the hospital, I might be able to squeeze in a run around the Back Cove or something. I had decided earlier in the day that I would do my easy run of the day in the afternoon, as I had felt pretty tired this morning after minimal sleep last night. Our trip to the clinic changed that plan, but that’s why I run by a flexible schedule these days. Maddie slept all the way to the clinic, and could only muster up a brief hello to Daisy, who had just come back from vacation. As Daisy laid sprawled out on the floor dozing away, I thought she looked like she was still on vacation. They have a swift fever protocol at the clinic for the kids with leukemia; fevers and infections are not something to be taken lightly. Immediately, when we stepped into the purple room (Maddie’s favorite room, by the way; it has a play kitchen), Nancy and Dr. Eric were in to tend to Maddie. Maddie did great as Nancy “put tubey in”, drew her blood, and hooked up the IV antibiotic. Once again, she was brave, and proud to tell her daddy all about it when she got home. She also had a chest x-ray, which, along with the blood work, were all reassuring. After having looked at all the test results, Dr. Eric concluded that we didn’t have to make a trip to the hospital, but he let us know that we shouldn’t hesitate to call the clinic if anything were to change throughout the night. Maddie and I were both glad to know that we would, indeed, make it home for the night. Before Maddie fell asleep on the way home, we talked about the fact that tomorrow she had music class at school. She commented that she hoped she felt like going to school tomorrow, as Miss Sharon’s music class is one of the highlights of school for her. As I looked back at her as she slept with her head in some funky, contorted position, I hoped so too. So, we’ll see where we end up tomorrow…

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 »