Thursday, August 22, 2013

Week 4

Week four was great!  Everything was very routine.  We made it in good time (about 4 hours start to finish), and Logan didn't cry or even fuss with any of the medical stuff (he even took a good nap during the infusion).  He was actually quite charming with the nurses and even put on a little "show" for them.  This kid is made for this!  The only slight difference this week was that Logan's blood counts were officially out of the normal range.  While they were low, they were not low enough to withhold treatment for the week, so we were able to continue.  I am interested to see where the counts go this week.  Low count = increased risk of infection.  The good news is, for the next two treatments, Logan's doses will only be one of the two medications.  So far, Logan's weekly doses have been a combination of Vincristine and Carboplatin.  Logan will get a two week break from the carboplatin and only receive the vincristine.  Vincristine will not effect his blood count, so, even if his counts continue to drop this week, he has 2 weeks to recover before being hit with the carboplatin again.

We have really gotten into the routine.  I was a little worried this week, as it was my first week back to work and having to deal with chemo.  Routines are our friends!  We know what to expect.  The kids know what to expect.  It really makes life a lot easier. Our appointments are routine and our entire day is now routine.  Here is a glimpse of my new thursday routine sans all the medical stuff (as it was today):

5:45 - Wake up, wake up husband, shower, brush teeth, get dressed, etc.
5:55 - Wake up husband for real (he's still sleeping)
5:58 - Pack lunches, pack chemo bag (supplies to get us through the day at the hospital)
6:10 -  Wake up kids, get them dressed, get Parker's bag packed to go to "school", wake up husband (yes, he's still in bed)
6:30 - Feed the cats, take out the trash, get the boys in the car
6:45 - Drop Parker off at school
6:50 - Dunkin Donut stop for coffee on the way to DC
7:45 - Arrive at hospital (thank god for the HOV lanes or this step would be at least TWICE as long)
8:00 - Breakfast at the hospital cafeteria
8:30- Arrive at chemo clinic
12:45 - Leave Hospital
1:00 - Drop Ryan off at work
1:45 - Home for a good nap
6:00 - Pick up Parker from school
7:00 - Pick up Ryan from the train station
7:15 - Dinner
8:00 - Medication and bed time for the boys

In there somewhere is quality time with the kids where we teach them valuable and important life lessons and enrich their lives in the most profound way.  Or maybe some cartoons and a snuggle - hard to tell the difference.

Monday, August 19, 2013

Back to Reality

Let me start off by saying, Logan has done great this week after treatment.  We had one incident Thursday evening that involved Ryan scrubbing diarrhea off Logan and the restaurant bathroom.  Other than that and the usual 24 hour lack of appetite, Logan has been his usual ball of energy.

With that it's back to life... back to reality.  I have been really lucky in my life to work a job that I love AND have some awesome built in vacation time.  As a speech therapist in the school systems, I am fortunate to have automatic vacation time.  Spring break, winter break, summer break.  I have to admit, it is REALLY nice!  I have considered moving on to a more medical environment (i.e hospital, rehab, etc.) but to be honest, I just don't want to give up the vacation time.  As a mother of two, it has really benefited my family.  I love being able to be home with the kids or take them to visit family for weeks at a time.  It has especially been a benefit this last month or so while getting things situated with Logan's chemotherapy treatments.  I was able to finish up my summer hours (ESY, summer school, summer academy, whatever you want to call it) and focus solely on getting into a routine with doctor's appointments.

Harsh reality hit when I got a call from one of my schools to remind me that school would be starting August 19th.  Time to get back to reality.  It has always been a difficult transition to go back to work after a break (I know I shouldn't complain, at least I had a break right?!) This time, it will be even more difficult.  This will mark the start of something new.  Being a working mother is hard enough.  Now, I am a working Chemo mom. Making sure I balance my work schedule with Logan's medicals needs. Getting my work done, yet being available if Logan is sick or needs to see the doctor.  Working as a contract therapist, I set my own hours and I have formed a great relationship with my two current schools over the last 3 years. I know it can be done, but it won't be ideal.  Not for me, not for Ryan.

Thursday, August 15, 2013

Chemo week 3

Finger puppet show
Week three was a record setting week. Our fastest day to date. Starting our appointment at 8:30, we were on our way home by noon!!  It was like a well oiled machine. Probably helped that there were very few children there. In fact, Logan was the only one in the art/play room (usually at least 4 other kids there waiting). I could definitely get used to this.

Logan did great with the port access. A little fussy but great overall.  This was the first time we had a "child life specialist" with us to help distract him. Armed with an iPad, she distracted him with a Grover app. Overall, continued improvement.

In addition to access distractions, the child life specialist gave Logan some one-on-one attention during his infusion. She brought him a Gabe's chemo duck and tool box full of chemo supplies. Logan was able to play doctor while he waited for his medication to push. He went through all the steps of his chemo appointment with his new duck so the duck "can grow big like me [Logan]."  Read more about Gabe's Chemo Duck here.  A great program.

Cleaning chemo duck's line

The doctors think Logan is doing great with the treatments.  We won't know if it is being effective until his MRI in October, but he is managing the side effects like a champ. We are still watching his nerve function closely as we are noticing some minor changes in his feet. In addition, his feet/heels are tightening up, so we have to start stretching.  If it doesn't improve, they will likely recommend physical therapy. 

This being the third week, will be the first good indicator of compounding effects. Fingers crossed he does well, especially because I have to go back to work next week.

Monday, August 12, 2013

Weekend Review

So, as I mentioned in my previous post, the aftermath of the second week of chemo started off a little rough. Following the doctors' orders, we held off on giving the anti-nausea medicine so we could see how he would do without it. They gave him the usual dose prior to starting the chemo. He did fine that night, eating more than enough dinner and feeling fine. (for anyone that doesn't know, to say that Logan is a "good eater" would be an understatement. You would think he was training for a competitive eating competition the way put food back) When he woke up the next morning, it couldn't have been more than 5 bites into his breakfast before he lost it. Remarkably, he was not upset at all that he had just thrown up all over himself. I suppose I would have expected a little fussing. With a quick dose of anti-nausea medicine, it was on with the day.

Overall, he was a little cranky and tired the day after. Bursts of energy and hyper activity definitely masked his overall demeanor, but a mommy knows. He also, had very little interest in eating. He was able to eat a few bites of lunch but definitively no where near what he usually eats or what he managed last week. His appetite picked up again around dinner and he mananged a more typical dinner. So far, he has been back to "normal".  Still a little more tired and irritable.

I don't know if its the nerve medication, but he has seemed a little more clumsy than usual. He is falling down and tripping quite a bit. This is something that we are told to look out for as it is a significant side-effect and something that they want to monitor closely. Typically he will trip, fall down, cry, and shake it off after a quick moment. 

One spill in particular Saturday night did, however, bring us to the ER for a check up and CT scan.   He was running around and tripped, flying head first into the edge of our TV stand. With no hands ready to break his fall, his head took the full force of the fall.  Normally I wouldn't worry to much (he's had some pretty bad spills in the past) but he was just not acting right. He was awake but being relatively unresponsive and falling asleep. Long story short, we took him to the ER and were sent for a CT scan. Three hours later, we were cleared and went home.  I suppose we should get used to this as we will likely be making emergency fever runs somewhat frequently. 

The best news of all this week is that, starting as early as the car ride home from his session, he was already asking and talking about going back next week I couldn't help but break into cheers.  He has been talking about going to the doctor as least 2-3 times a day and is taking his medicine with little to no resistance.  All in all, another good week.

Friday, August 9, 2013

Week 2

Week two was filled with pros and cons. Thankfully mostly pros.
Pro-  another day of entertainment including a show of "make believe", more great crafting and Logan's favorite clowns (who he chased around and wouldn't let leave).

Con- increased wait times due to, I assume, a larger than usual number of kids.  We arrived at the hospital at 8AM and left at 3PM. Nothing like a full day at the hospital.

Pro- spending the increased wait times commiserating with familiar faces. One of Logan's schoolmates was there recieving treatment as well. Small world.

Con- a more irritable 3 year old. But hell, spending 7 hours in the hospital made me irritable too.

Pro- MAJOR improvement in the access and unaccess of Logan's port. Don't get me wrong, he was still upset and he certainly still cried, but he was far more reasonable.  We can credit this to the use of the numbing cream prior to our appointment. He also did a great job with all the line work. For all the flushes and injections, he actually handed the nurses the end of his line and sat chatting with the nurse about everything they were doing. Having to sit for almost two hours in a chair with tubes coming out of him, he didn't once complain, ask to go home or fuss in the least bit. It is amazing how "normal" this is to him. He even got a good nap in. I got a ton of positive looks and comments from the nurses about how amazing he was. I was sooo proud.
Con- did I mention how long we were waiting??
Pro- The doctors were very happy with how well Logan tolerated week one. We saw no nausea and very little fatigue. The only noteworthy report was that Logan complained of his feet hurting. This is something that they will monitor closely as one of his medications can cause significant nerve damage in the extremities. He passed his neuro exams with flying colors and cleared the necessary blood counts. Because the doctors were so happy, they suggested trying this week without the anti-nausea meds.  They wanted to see if the medicine was working or if he just didn't need it. The less medicine he needs, the better. 

Con-  We followed the doctors recommendation and did not give the anti-nausea medicine. First thing this morning, with only a few bites of breakfast, Logan threw up. I guess it's back on the anti-nausea meds.

Pro-  wrapping up our long day with a trip for ice cream. As it was Miracle Treat Day and Dairy Queen was donating money from every Blizzard sold to the Children's Miracle Network, this was a no brainier. Children's Miracle Network works to raise funds to help support children's hospitals around the country. We were quite happy to help support an amazing cause AND eat ice cream!!!

All in all, it was a great day. The pros far outweigh the cons and Logan showed us all, once again, how absolutely incredible he is. 

Saturday, August 3, 2013

The days after

Logan has done great following his first chemo treatment.  After spending hours at multiple pharmacies to get the required at home medicine, Logan is now armed with everything he needs to lessen the effects of his chemo at home.  After 2 days of anti-nausea medicine, he is doing well and we were able to stop giving it.  Now it's onto 2 days of antibiotic to prevent infection, since his immune system is now compromised.  This is the new weekly at home routine. He is a little hesitant of taking medicine, but he gets it down ok.  Hopefully, he stops fighting it soon. 

His overall demeanor has been quite good.  A little groggy on day one but bounced back nicely.  Ryan jokes that they must have mixed up his chemo with saline because he is quite active and happy.  We are told that the symptoms will compound over time as he gets more and more treatments, so I'm glad he is starting off strong.  He is still saying that he doesn't want to go back to the doctor.  We are working on that.  Trying to stay positive and convince him that it will be fine to go back.  Now armed with the numbing cream, it shouldn't hurt getting the port accessed, but the mental/emotional damage has been done.  It's going to take some time to get over that.

Thursday, August 1, 2013

Chemo Week 1

The day has come.  Logan's first day of chemo. All Logan has been talking about the last couple of days has been going to the doctor, so naturally the first words out of his mouth this morning were "Can we go to the doctor now?"  We started bright and early on the road in to DC.  For those not familiar with the DC area, morning rush hour can be brutal.  We left enough time to get stuck in traffic and used it to eat breakfast when we got there.  Logan got to say good morning to his favorite giraffe.  Reality check time was when we were checking in to security and the woman knew were in for the long haul.  Instead of the usual daily visitor pass, we got our long term badges.  At least we don't have to stand in the security line any more. 

First port access
Once we got all checked in we started our new weekly routine.  Get vitals, get port accessed, draw blood, meet with doctors for neuro checks, wait for chemo to be ready, start infusion.  Logan was great with most of the events of the day.  He waited patiently and participated in MOST prep activities willing. The port access was pretty rough.  They basically have to stick a needle through the skin and into his port.  He was not happy with that, obviously.  Starting next week we will be able to put a numbing cream on it before our appointment, so hopefully he won't feel it. Once it was in, he was ok with it.  It didn't bother him too much.  He was actually very protective of it. He didn't want to let anyone near it and kept tucking it into his shirt so it wasn't sticking out.  He was so attached to it, he didn't want it out.

Even though there was a LOT of waiting (hours), there was plenty to keep him busy. He spent some time in the art room, painting and doing crafts. He REALLY loved the visit from the clowns.  It's no wonder he loves doctors!

FINALLY, 3 hours into our appointment, it was time to start giving him some meds.  He was a little anxious at first.  I suppose he thought it was going to hurt getting things through his port.  After the first couple flushes/meds, he was ok with it.  First came an anti-nausea medicine and then the Vincristine.  Those were quick injections.  The next was Carboplatin.  This is the slow push that takes an hour.  He did great (of course)!  Between the cartoons and iphone apps, he was plenty occupied.  Once the carboplatin was done, it was time for one last flush and removing the access.  Logan begged to leave it.  He wasn't ready for it to hurt again.  He fought and cried 10 times worse than when he got it in.  I don't think it hurt, just the anxiety of it. 

Finally, 6 hours after we arrived, it was time to leave.  I'm told, going forward, our appointments won't be quite as long.  Armed with our stack of prescriptions and documents, it was time for our special lunch and a good nap.  Leaving the hospital, I heard Logan say something that I have never heard from him before.  "I don't want to go back to the doctor."  My heart sank.  The only thing that made this easier for me, was that he loved going.  If he loses that, I don't know what I will do.  I hope it was just a passing comment and he will regain his enthusiasm before next Thursday.  Now we know what to expect.  Whether or not that is a good thing, we will find out.  The next questions we have will hopefully be answered in the next couple of days.  We will wait and see how his body handles the meds. So far, his spirits and appetite are up.  Fingers crossed that it lasts.