Hanging

We are pretty much just hanging out. Alexis seems to be responding well to the drugs with minimal side effects, besides the glucose levels. They said if we can get those under control, which we still haven't figured out the right dosage, we would be closer to going home. So, we wait. Today we had Alexis's roommate Emma over to our half the room for a craft play date. We also did Alexis's favorite activity of swinging in the garden, which has been a sanctuary for all of us. Now, we hang out and hope treatment continues to go well, and we can figure out how to maintain a normal glucose level.

Mission Complete

Today was a fairly uneventful day. The doctor's rounded and the head oncologist declared Alexis's treatment to be unremarkable so far. They all were nodding with smiles, so I did the same. Then, after they left and I thought about "un" before the word, I was wondering why the heck they were all smiling and why I didn't question more, even in my sleep state. So, I walked out and clarified what "unremarkable" meant due to the English language knowledge and the different non-verbal cues. My instincts were right that this was a good thing. Apparently, as if the medical profession isn't hard enough to understand, unremarkable actually means good. Her treatment and corresponding body reaction has been unremarkable or uneventful, so that means that things have gone really well and it is actually remarkable. However confusing, we will take the good news! 

We spent a lot of our day not only playing, but doing therapy as well. We asked for OT and PT to start seeing her, as we don't want any muscle decrease due to hospitalization. So, OT came and got her today and took her down to their "gym," which was also nice for another change of scenery. She swung on the swing while trying to hit a target by throwing, finger painted, did a puzzle and thought she was getting to play while working on fine motor skills. 

Then, Alexis's fabulous speech pathologist came from her school and spent an hour reviewing words and even working on a couple new ones. She has been amazing throughout Alexis's speech journey, and we are so blessed that she is such an amazing person and would come see Alexis in the hospital on her own time. We have to be the luckiest people on the planet to have such wonderful people in our lives. 

Finally, we filled out extra time with some pranks/games. Alexis put lights on her fingers and went out and told her nurse that something was wrong with her hand and then pulled them out. Alexis and mom also put on mustaches and went on a spy mission to find dad after work. Mission complete for the day...we found dad, made it through 4 of 5 insulin shots without a tear, and had a little fun in the process.

Special Guest

Upon moving to St. Louis, we met a couple early on that we hit it off with from a personality perspective. Not only did we have a lot to talk about, but we connected on a deeper level, since my dad and Tim both had ALL. We have been friends for the seven years since, with kids the same age, and still compatible personalities. Now that Alexis also has ALL, it has been so heartwarming to know that a person who was diagnosed 30 years ago and had the odds against him is such an amazing person. He has had some lasting effects with long term side health side effects, but the important things like an amazing personality, a very intelligent person, and a fulfilled life are about as good as you can get. It is so nice to know that after fighting through this, you can not only survive, but thrive. Tim received the first bone marrow transplant at Children's, the same hospital Alexis is at, around 30 years ago. He stopped to see us and Alexis today and explain to her all his battle scars. What an inspiration for us!

We had a pretty good day. We started the day meeting with a new Endocrinologist. Alexis's blood sugars have continued to be elevated (normal is in the 50-80 range, and Alexis's blood glucose has been high 300's to low 400's). So, they have started her on insulin, and she gets finger pricked five times a day now to test her blood glucose, which has not been a fun addition. However, we know it is necessary, and short term, as they expect this to go away after the 28 induction period.

We did get to take one drug away today. As the leukemia cells break down and disperse in the body, they often cause issues with your electrolytes. So, they start you on a drug called Allopurinol to help prevent tumor lysis syndrome that can result from this process. When the burden on the body decreases, since the body starts to regulate, they shed this medication from her portfolio. This is a sign that her body is starting to process and react to the medication and getting ride of those leukemia cells.

Finally, they also gave her first dose of the third chemo-treating drug for this first induction phase. Peg Asparginase was given on this day four and will be given three additional times. There is a high chance of an allergic reaction, so before they gave this chemo, they brought in oxygen tanks, epi pens, etc. Talk about frightening as a parent. The nurse then stays in the entire hour monitoring her vitals to make certain to catch any reaction. Not the most relaxing hour of our lives, but Alexis did great with it.

So, we had a big day with changes in medication all over the board while trying to keep her calm about the pokes. Our special visitor was so important for not only Alexis to see, but Brian and I to be reminded about how you can overcome this and live an amazing life!

Cards

Everyone has been amazing with their support, and we are so fortunate to have such great people in our lives. We will ask for help when we need it, we promise, as that's the only way we are going to get through this. For now, we are just trying to figure out what we need. If anyone wants to send notes or cards to

Alexis, she would love it. You can just send to our home address, and we will get to her at the hospital.

We are status quo right now. Alexis received her first spinal chemo during her spinal tap on Monday and followed that by her Vincristine. During the next 28 days of her treatment plan, she will get several dosages of steroids a day plus one additional chem on 4 different days throughout. The bulk of the induction (or first round) of treatment will be mostly steroids with a little chemo. Don't get us wrong, the chemo is pretty powerful, but the steroids do most of the work of getting the initial cancer cells under control. 

With steroids come several possible side effects. Most kids become a little crazy on them and have a big increase in appetite. So far, Lexi hasn't shown signs of those, but it is still early on and some side effects don't show up for a week. We are waiting for the bear to emerge and preparing ourselves for the wrath that might follow. Her body is showing some reaction, as she has elevated blood pressures as well as elevated glucose levels, two very, very common side effects. For now, they have started her on blood pressure medication and have taken the sugar out of her fluids she receives. They will continue to monitor these, but say they are easily controlled and will resolve after the 28 day induction period. They are so confident of this, that they have said to continue to spoil her with donuts and brownies (new fav in the hospital!). 

Other than that and being a little tired (aren't we all!), she is showing no signs of being sick, for which we are grateful.

Lexi vs. Leukemia: The Battle Begins

Today was a stressful day, but we're excited to report a very good one. Alexis went into surgery late this afternoon, and not only did the procedure go as planned (port was installed and lumbar puncture executed without incident), but we just received the outstanding news that there is no evidence of cancer in her central nervous system.

This was the final hurdle we needed to clear to confirm her diagnosis of 'standard risk' ALL, without any complicating high risk factors that would necessitate greater toxicity of treatment and carry lower survival rates. Alexis is the right age (>9yrs old is high risk), had a white count of 25-30k upon admission (>50k is high risk), and does not have cancer cells in her spinal cord or brain, meaning her starting point gives her one of the best chances of survival (80-90%). The only possible better outcome would be having a short list of beneficial genes which could have put her in an unusual 'low risk' category but given the range of possible outcomes and consequences, we will take this as a starting point for her battle with cancer. She has been dealt a tough hand many times in life, and a Leukemia diagnosis at age 6 certainly qualifies as another example... but tonight we are celebrating the fact our little fighter has a legitimate fighting chance of beating her latest challenger.

She also got her first two doses of chemo today. The first came during surgery, as she received a baseline dose during the lumbar puncture. The second came in her room just moments ago, a small initial dose through her port. Her cancer fight has officially begun.



Transport pic from oncology floor to surgery floor.



Lexi and Daddy enjoying a few smiles and laughs in the pre-op room.

 

Alexis and Mommy showing their 'warrior faces' shortly before surgery.




Lexi fast asleep just minutes before they took her into the OR. Guess she didn't Dad and Mom's anxiety, and guess the anesthesiologist wasn't really needed after all!

 



Keeping Busy

These obviously are anxious days as we await the start of chemo and final determination of treatment protocol, but we're also committed to make the best of them. Other than a heart echo (baseline test since potential side effect of chemo is damage to heart tissue) and a few other tests, this weekend was relatively slow by oncology floor standards. That gave us (especially Dad given Mom's brief and unfortunate timeout for gallbladder surgery) the chance for some phenomenal 1-on-1 time with Lexi. 

In addition to a couple garden walks, a couple hundred games of UNO, and a couple thousand games of Candy Land, the STL Children's Hospital also does an amazing job teeing up fun activities on a regular basis for its cancer patients. Only a few days into her stay, she's already made a number of craft project masterpieces, gave Elsa a run for her money with a rousing 'Let it Go' rendition during music time, and received a dazzling manicure from a couple awesome high school volunteers.

Clearly doing these things under different circumstances would be the ideal, but this is time with Lexi we'll never forget. And for those of you feeling bad for Lexi, there certainly will be cancer and chemo demons in the day ahead which will justify those feelings... but trust me, with the exception of a handful of IV sticks (impossible veins to find is also in her doctor-baffling bag of tricks), you would think the last 3-4 days have been the time of her life. Not sure if the Guinness Book of World Records has one for number of smiles in a day, but if so, the current record holder has that title only because there was no one tracking Lexi this weekend.

Tomorrow, things admittedly will start to become a little different. She will receive 1-2 platelet transfusions overnight (her levels aren't quite at the normal trigger point, but they're also not at a sufficient level for surgery), and then head into a surgery which will abruptly start us down the road that now awaits us. She will have a lumbar puncture (diagnostic tool to make sure cancer has not spread to her brain or spinal cord), have a port installed (central line where future blood samples can be taken and chemo and other meds can be administered), and likely receive her first dose of chemo. After her surgery and after lumbar tests are read, we should be in a position to determine her specific treatment protocol going forward, and get a much better sense of where things are headed if things go according to plan.