It’s Day 367 of Megan’s journey towards a full recovery from stage 4 aveolar rhabdomyosarcoma cancer. Our family just came off a whirlwind weekend in Chicago where we saw the musical, “The Lion King”. We also went to a couple of our favorite restaurants that Megan picked out for us, that included us sharing the famous “The Meaning of Life” dessert at Gibson’s Steakhouse. Most importantly, we enjoyed some quality family time together prior to school starting up again tomorrow. I know Megan has enjoyed having our entire family at home, and her friend Emma available throughout the day, which means tomorrow will be another adjustment period for her. However, Megan’s homebound tutoring sessions will be starting up soon, and she also starts back with physical therapy this week, so she will find plenty of things to keep her occupied.
All of the teachers at Coal City School District started back to work today, so I left the house pretty early to get a head start on things at the office. Kenzie didn’t have basketball practice until 1:00 p.m., so she was able to get a little extra sleep this morning, which I know she enjoyed. Last night, Megan and Emma stayed up pretty late watching television in Megan’s room. In fact, when I fell asleep at 11:00 p.m., I know Emma was still here, so I’m not sure what time she and Megan called it quits last night. Since Emma lives right across the street, it’s pretty easy for the two girls to have a late night. Since school is starting tomorrow, I think they wanted to take advantage of their last free night to stay up late :)
Megan had a pretty good night, except for a brief episode of stomach pain she had at about 4:00 a.m. Her oncologists want us to start chronicling when she is having the stomach issues so they can try and pinpoint what might be triggering it. They believe it is a byproduct of the multiple Vincristine doses she has endured, but they need to be sure nothing else is causing the pain.
Even though she had a late night, Megan still had to get up in time to leave the house at 8:30 a.m. for her appointment at the CDH clinic. As always, Nurse Jennie was ready and waiting to take care of her upon arrival. She accessed Megan’s port and sent a blood sample to the lab to check her counts. Usually, the Irinotecan does not cause her counts to drop like the VDC and VAC treatments do, so we were hopeful that her counts would be at an acceptable level that didn’t require any transfusions. When the results from the lab came back, I’m sure Megan breathed a sigh of relief to hear that everything looked good. Even more important to her was the news Dr. Salvi gave her that because her counts were good, she didn’t have to come back until next Monday!!! Anytime Megan gets a week long reprieve from the hospital, she treasures it. Here are her counts from today.
Although her blood counts were good, Megan did receive some news today that set her back a bit. Due to some information Dr. Salvi garnered from her blood tests, he said that Megan needed to see an endocrinologist. He is concerned about some of her hormone levels and he wants Megan to see a specialist to see if she needs to go on medication. Until we see the specialist, we can’t be sure of the extent of the issue, but it was devastating news to Megan. After everything she has been through, you wouldn’t think another visit to yet another doctor would be that concerning to her, but as she moves towards the end of her treatment, she is quickly reaching the end of her rope. She knows that yet another doctor probably means yet more medical tests, which most likely will result in yet more medication. Being so close to the finish line and then hearing that cancer has potentially caused yet another issue for her was just a little more than she was prepared to handle today. Understandably, she shed a few tears and expressed her frustration, which is all healthy for her to do. In the end…as she has done so often over the past year…she reached down deep to pull herself together so she can ready herself to face yet another challenge along this incredibly difficult journey. She goes to the endocrinologist on Thursday, so we will know much more after that appointment. Today was one of those times where I had to wonder how much more she can be expected to take. Even though she has traveled this journey with an extraordinary amount of courage, grace and dignity, at some point it seems like enough is enough. I guess cancer never claimed it would fight fair.
After Megan’s appointment at the CDH clinic, she wanted to stop for lunch at Maggiano’s in Naperville. After all she has been through, both Deb and I have quite the soft spot when Megan has a request, so needless to say, they headed to Maggiano’s. Here is Megan enjoying her baked ravioli. When she flashes that smile, it just melts my heart.
When Megan got home, Emma stopped over for a visit. Kenzie was at basketball practice, but after practice, both she and Makenna Emerson came over to keep Megan company. I made shrimp stir fry for supper and after that, we all just hung out. The new season of “The Bachelor” started tonight, so all of the girls were anxious to watch the opening episode. It was nice to have a relaxing evening prior to the hustle and bustle of school starting tomorrow.
Speaking of school, I met with the high school principal and Megan’s school counselor today to start making plans for Megan to transition back to school. If everything goes as planned, she will start going back to school in mid-February to take English and Math. After being away from school and her friends for so long, going back to school will be a difficult transition for her. In fact, the social worker at the hospital said that it is difficult for most all of her pediatric cancer patients to go back to school after being out of school for over a year. However, we are putting together a plan to ease her back in and provide the support she needs to be successful. Luckily, we still have a month and half to help her get prepared for this next chapter in her life.
Although that finish line is right around the corner, it seems like cancer will not give up easily. Megan got hit with another blow today when she found out she had to go to an endocrinologist, which is the last thing she wanted to hear. She is so close to the end, and I know she just wants to get there and put this nightmare behind her. However, the reality is that even when she completes her treatment, this marathon is not over. There will be after affects that Megan will have to deal with for quite some time after her treatment ends. She will also have those dreaded PET scans every three months to make sure the cancer remains in remission.
Being a runner myself, I have felt the exhilaration of reaching the finish line of a marathon, and it is an indescribable feeling of joy. When you work so hard for something and it comes to fruition, the feeling of accomplishment is something that cannot be put into words…you just have to experience it to understand it. However, after that feeling of exhilaration ends, I don’t stop running. I might take a few days off, but pretty soon, it’s right back to training and getting ready for the next race.
Very soon, Megan will be in a similar situation as she reaches the finish line of her marathon. She will cross that finish line with her arms raised in victory, and we will all revel in her accomplishment, because it will be nothing short of miraculous. However, after the joy and exhilaration wear off, Megan will still be in the race. She will be in physical therapy in hopes of regaining her ability to walk normally. She will undergo periodic electrocardiograms on her heart to make sure the damage done by chemo does not get any worse. She will be looking in the mirror every day to see if her hair is growing back normally. She will be trying to physically and mentally transition back to school. She will be trying to control the anxiety of waiting for her three month PET scans hoping that the cancer remains in remission. And now…depending on what she learns at Thursday’s appointment, she may be working with her endocrinologist to control whatever hormone damage chemo may have caused.
The end of her 54 week treatment marathon is near, and the battle is nearly won…but the war will not be over. Such is the harsh reality of pediatric cancer. Cancer is so evil!!!
I don’t like ending a day on a downer, so here is a picture of Megan and that crazy cat Belushi that was taken tonight. On some days, the beautiful moments are hard to find, but if you look hard enough…they are always there.
On to Day 368…