Posted on September 13, 2017
Posted on September 13, 2017First full week in maintenance... what does that even mean?
I pulled this from Google something or another:
Maintenance therapy is a medical therapy that is designed to help a primary treatment succeed. For example, maintenance chemotherapy may be given to people who have a cancer in remission in an attempt to prevent a relapse. It can involve chemotherapy, hormone therapy or target therapy.
Drake's maintenance therapy includes chemotherapy and eventually/probably/maybe/who the heck knows hormone replacement therapy (we will see an endocrinologist in November to see what the chemo and radiation has done to his hormone levels). His new routine is now labs every two weeks, oncologist appointment once a month with chemo through his port, and a spinal tap with chemo in his spinal fluid every three months. He will be taking weekly chemo pills at home and daily immune suppressants on top pf his other meds. Throw in steroids week here and there and its just a lot of flippin pills for a kiddo to take.
So how has the last week been? It is hard to say. Part was UGH! It was steroid week. Part was celebration time, because hex yeah he hit maintenance. Part was relief, part was sadness, others parts were anxiety, and most of it was numbness.
Lets start with the steroids. If you have followed Drake's story awhile, you know about the steroids (that word has almost became a swear word in this house. When you stub your toe just yell steroids!) They turn him into a completely different kiddo. His emotions go all wonky, he becomes an emotional mess. His anxiety and worry escalate, he becomes super clingy. His sleeping pattern goes out the window, and he cant sleep well because he has nightmares. The one thing that the side effects sheets dont tell you about is the pain they cause. Drake's hip joints and legs have taken a beating from steroids. When he is on them, his joints become very stiff and it is painful to sit, stand, or move. What is even worse? The few days after steroid week. Yesterday, we left a restaurant after ordering because the chair was too painful to sit on for him. We came home and Stinky laid around with a heating pad on most of the afternoon. He isnt one to take pain medication, even when it would help. He tends to be stubborn - which is a good thing! He doesnt give up. He had a physical therapy evaluation done awhile ago, but is wait listed. The first time around with treatment, PT helped a lot.
So what is up with the range of emotions going on with Drake hitting maintenance? Well... the easy one is relief. He made it! He has fought so hard over the last year since his relapse that its like whew... we can finally exhale and breathe. Life just changed again, but for the better.
You feel grief for him as you think about what the last five years (and it has almost been 5 exact years since he was orginally diagnosed Sept 29, 2012 - amazing how that date sticks in my brain when some days I have to think about how old I am), has robbed from him. It also shows up in thinking about what his life could have been, but also celebrating everything he has became.
Anxiety hits hard too with the thought of the big changes that are going to be happening. Mostly with going back to school in a month. The doctor wants him on maintenance therapy for a month to make sure nothing goes screwy before he returns to school. It is the anxiety of sending him into a uncontrolled environment where he will be exposed to extra germs. It is worrying about if this will be the finish of this cancer crap. It also comes into play when I think about Drake's social awkwardness. This past year his main peer has been his cousin who "gets" Drake. We moved right before his relapse last year so Drake's main peer support group was not established before he left school for treatment. He has rejoined cub scouts this year and hopefully some of the boys in his den will become longtime friends, like his old den in Omaha.
Numbness... sounds harsh, doesnt it? I think with everything that has happened over the last year, most of my emotions that are extreme have shut off. It has been a long road of having to stay focused on Drake's fight, that Im numb to the question "now what, what do I feel now". Do I go find a job right away again, what the heck do I do. Drake's journey began five years ago and he still has a long way to go, but there is now wiggle room and I am not sure what to do with it. Life changed, but it didnt change who we are day to day.
Drake is still a warrior, only with new battles to fight (cognitive issues from chemo, learning and processing how to cope with with the new normal, and just being a kid is hard). He still has the drive and stubbornness to never give up. But most importantly, he is still my Stinky, my heart, and my life.
Never Give Up, All Day, Every Day
Posted on September 6, 2017
Posted on September 6, 2017Guess who finally hit maintenance?
Heck to the yeah!
Doing a happy dance in the doctor's office! We SO got this. Spinal tap and vincristine today, steroids for a week, then weekly chemo pills with monthly vincristine through his port. Easy Peasy till next September.
Never Give Up, All Day, Every Day!
Posted on August 26, 2017
Posted on August 26, 2017
Just wanted to say Thank You to every one that has offered well wishes during Hurricane Harvey. Yes, we are in the estimated path, but hopefully by the time it hits us it will be downgraded to a tropical storm.
We have an evacuation plan in place and are packed already for it. If we even start to flood (as estimated 30+ inches of rain the next few days) we will be high tailing it north for a mini vacation. I dont mess around with flood waters.
The doctor and I have been in contact and also have an emergency plan in place. We have canceled all doctor appointments for early next week, and believe Drake is in a good spot that we can wait till next Friday to see his oncologist, pending nothing drastic changes. If his health does change, we have set up established care plans for the local hospital.
I will try to stay as connected as possible, but if we have a blackout, I will be trying to save my phone battery as much as possible.
To all my other Southeast Texans, Stay Safe!