Chemo Santa

Today's chemo was more or less like the others. The conversation with the doctors revolved around his NONSTOP appetite and the continued behaviors that we see. As far as the appetite goes, the doctors said that could be a good sign that the chemo is working. He said that sometimes, with tumors in the hypothalamus, kids experience decreased appetite so when the tumors shrink, they see an increase again. I guess we will find out in a few weeks when he goes in for his MRI.

The behaviors have been something we have talked about for years now. We put that on the back burner when we started chemo so that we could get him stable on treatment. Now that he is doing well and hopefully getting better, we brought it up again. Behaviors of concern are general inattention, hyperactivity, lack of impulse control, etc. All very common with NF. Basically, we can't take our eyes off of him for a second without him doing something destructive, unsafe or otherwise undesired. The doctors suggested a low dose med similar to Ritalin. I swore I would NEVER medicate my child. As a kid, I was on Ritalin and later Adderall, and I know first hand what that does to you. I didn't want that for my kids. After seeing Logan struggle and know that he really can not control himself, I know that something needs to be done. We have tried everything (and given my job, I like to think I know a thing or two about behavior management), positive reinforcement, negative reinforcements, rewards, punishments.  Nothing seems to work.  I want him to be safe. I want him to be available to learn. I want him to be able to stop and think and make decisions based on what is right, rather than what he thinks first. We are going to give it a try and see if it makes any difference. Hopefully this will help and allow us some flexibility to provide Logan with the independence and learning opportunities that he needs. 

Today was also a great day at the clinic for the kids. When we arrived, we were greeted with a Christmas tree surrounded by probably hundreds of presents. These presents were donated by the family of a former patient (I assume the same one I mentioned months ago that gave out goody bags to all the chemo kids on their deceased daughter's birthday).  All of the kids coming through the clinic got to pick out their own presents. Logan picked a keyboard, or compiano as Logan calls it. In addition, there was a holiday party for the inpatient and outpatient chemo kids with food and cake and more presents and SANTA!!  Logan was so excited to go see Santa, he even woke up from his Benadryl induced nap for it.

All in all it was a great day for Logan at chemo. One more treatment before his next MRI where we will hopefully get some good results.

Hat head and a mouth full of cake

Courage

It's been a little while since my last update and of course that is a great thing.  It means nothing truly eventful happened.  We had a great Thanksgiving with family and a low key few days at home thanks to the snow that kept us all home.

Last Thursday, Logan had another uneventful chemo session. He slept through the whole 3 hour infusion again.  I have to say it again, I love the addition of Benadryl to his treatment!  We spoke to the doctors at length about some long standing issues.

First, Logan has been limping on and off for a while now.  While the first incident was related to an injury, the re-occurrence of the limping, as well as complaints of foot pain without a recent injury, have us all scratching our heads.  He is no longer on the medication that causes nerve damage, but there are still cases of patients experiencing foot and leg pain on his current medications.  Since he has been off the Vincristine, Logan has shown some additional weakness in his left foot.  Since the issue isn't consistent or really interfering with his functioning, we can just wait and watch (the overall theme with NF).  If it really becomes a problem, they will do an MRI to rule out any damage. 

The second issue was the fevers.  We have adhered to the strict fever protocol from the beginning.  When Logan's fever hits 101.0 we call and are always instructed to go to the ER (for 2 days) for IV antibiotics.  While I totally understand the need for the extreme precaution, it is certainly less than desirable.  Logan gets a fever EVERY Friday after his chemo infusions.  We have yet to see a week when Logan does not have a spike in his temperature.  Thankfully, lately the spike in temperature has resolved quickly enough and not gone high enough to require a trip to the ER.  We spoke to the doctors about this and our concern for this being a regular occurrence.  The kid goes through enough with having to get punctured and pumped full of poison for three hours every session, we really hate to have to add addition pain on top of that.  Not to mention that the ER port assesses are TERRIBLE!  Since fevers seem to be a pattern, but Logan's body seems to be able to manage it on it's own, the doctor's have allowed us an addition .5 degree flexibility with the protocol.  Now instead of going to the ER at 101, we don't have to go until his fever hits 101.5.  Win!

Spending so much time at the hospital, you get to know the other kids that are there for treatment.  You see them every week, you learn their stories and you get to care about them and their families.  This week during our 7 hours at the hospital, we got to know a little girl and her father, who have been receiving treatment for some time, but our paths have never before crossed.  This little girl is the same age as Logan and, like Logan, was diagnosed shortly before her 2nd birthday. Other than that, her story is very different. She was diagnosed with an aggressive kind of brain tumor and has been receiving chemotherapy treatment since.  Shortly after her diagnosis, her mother suffered a series of heart attacks that eventually killed her.  Her father remarried and together they raise her, along with her 5 siblings (including one with Autism).  This little girl, knowing and understanding her condition, speaks very frankly about it, and at 4 years old, is comfortable enough saying
that she is going to die, but that it's ok.  While they were there, the father was meeting with a social worker to arrange his daughter's "make a wish".  As if this little girl wasn't brave enough, as if battling cancer, facing death and going through painful treatments, all before her 5th birthday, didn't make her brave enough, her "wish" shows she is braver than most grown men!  Her "wish" was to swim with sharks! 

These kids, that battle with such strength and courage, never fail to amaze me. 

Uneventful weeks

After two more ER visits, we had a pretty uneventful days.  It was a nice break.  The kids went to school, Ryan and I worked.  All was right with the world.  Hoping this trend continues.

Dentist

Wednesday afternoon, the boys had their 6 month checkups with the dentist.They did a great job!!  They sat, they behaved and they didn't cry! Clearly, they did not get this from MY side of the family.  I'm pretty sure my debilitating fear of the dentist is, in fact, inherited. In fairness, I have improved quite a bit myself.  I can at least step foot in the dentists office now (for the boys' appointments) without crying.  I think I deserve a treat for that.  We got some tips for the dentist in dental care for kids on chemo.  Like everything else, we have to consider the germs and potential for infection.  Tips included changing his toothbrush more often and drying it completely before storing it. 

Fighting to stay awake

Thursday was Logan's usual chemo appointment.  Everything checked out and went smoothly.  His blood count were even higher than usual for him (still low for "normal").  The best thing about this session is that Logan slept through the WHOLE infusion!  He was hooked up for 3 hours and slept through it all! Partly due to the benadryl and partly due to the fact that he was up at 4AM! This is DEFINITELY the way I like do these appointments! If only they could all be this easy.

Friday he got his usual Post-chemo fever, but thankfully it went away on it's own pretty quickly so we didn't have to take him in to the ER.  I'm pretty sure this is a trend that will continue.  Chemo Thursday, Fever Friday.  I can deal with this, as long as the fever is low enough or goes away quickly enough so we don't have to make a trip to the ER.  This just making planning things around his chemo appointments a little more daunting. 

Glad this week was uneventful on the chemo side of things because we instead had to deal with emergency plumbing issues (water leaking out of our bathroom wall) and getting a new water heater installed at 2AM.  If it isn't one thing it's another.  I guess you can't have it all! 

Another 8 hours in the ER

This weekend was pretty similar to many others.  With my parents in town to help out, we kept Logan home from school on Friday.  His blood count were on the low side before he got his infusion Thursday, so I felt better about him staying out of the germ factory of daycare.  With kids in daycare, it's inevitable that they will get sick, but with a weak immune system, it can be dangerous.  Friday afternoon, Logan began with a low grade fever.  I assumed it would happen, as it seems to be the pattern.  Chemo on Thursday, Fever on Friday.  This week he was even more likely to get a fever as he also got the flu shot.  After an hour of low grade fever, topping out at 100.9, I gave the fever line a call.  I thought, MAYBE since he got the flu shot, which is likely the cause of the fever, we won't have to go in. MAYBE they would tell us to monitor it at home. WRONG. I know it's the right thing to do, following the doctor's orders, but part of me wants to just ignore it and give the kid a break for once. How bad could it possibly be?! With my mom at home to pick up Parker, I headed in with my dad for our, now too familiar, ER visit. 

Everything was pretty much as expected.  One advantage to being a chemo kid, is we get taken right back to a room and don't have to wait in the waiting room forever.  Of course, if he wasn't a chemo kid, we wouldn't even be there in the first place.  Logan got accessed, antibiotics and IV fluid.  Counts came back ok and we were cleared to go home and return Saturday for Round 2. Besides the nurse thinking my dad was my husband, it was a relatively non-traumatic trip. Ryan returned with Logan for Round 2 on Saturday.  This was the first I took off from one of Logan's hospital/ER visits and I have to say, I rather enjoyed the break.  Although, I was wondering the whole time how they were doing.  It's hard to turn that off.

Besides the inconvenience of two more trips to the ER, two more port accesses, and 8 more hours sitting in the hospital, Logan missed out on some fun times over the weekend.  A friend's birthday party on Saturday and a play-date on Monday.  We've been told to try to keep our lives as normal as possible through chemo treatment, but that proves to not always be possible.  In the short time that we have been doing this, Logan has missed out on more activities and events than I would like.  He has missed days at school with his friends, trips to see family, days at the zoo, parties.  I can't help but feel bad for him, but he handles it all with such maturity.  Maybe he doesn't understand, or doesn't realize that he is missing out.  Or maybe he knows and understands why.  Whatever the situation, this is just another way that Logan shines. 

Another week

Monday night I had a dream that I was at the doctor with Logan.  Only difference was that I was the one getting MRIs and riddled with tumors.  I had to go through the chemo treatments and uncertainty.  Logan was fine. In any other situation, a dream like this might have been upsetting and unsettling but I was comforted. Logan was fine.  To know that I could go through it and he wouldn't have to, I felt so at peace.  I wish this could be our reality.  I wish I could take this away from him and go through it for him.  The painful reality is that I can't.

Pre-meds while adding beads of courage.

Ryan had a busy day at work during this round of chemo, so I was joined instead by my mom and dad (Grandma and Dude). Everything was pretty standard except maybe the LONG wait.  The pharmacy seemed particularly slow today.  Logan was not too happy during the port access but got through it ok. Blood work was low but not neutropenic.  It took a couple of tries to get the urine sample, but got that taken care of.  During the doctors' exams, we spent a good amount of time talking about his foot.  Before, we talked a lot about his feet because one of his meds was known to cause nerve damage.  Now, the concern is that the new tumors could cause problems in his motor functioning.  The situation this week was that he injured his foot last Friday but continues to limp and have problems getting around on his foot. While the doctors aren't too concerned about an injury to his foot, it's important that they rule out a neurological impairment.  In other words, they want to make sure that his limping is, in fact, due to his injury and not the progression of the tumor.  If he continues to have a problem or if it gets worse, it'll be time for an xray.

Naps, not just for Logan

Once we got the clear for chemo from the blood counts, it was time to pre-med and wait for the chemo to be ready.  This is where the long portion of the day began.  We actually got his pre-meds while he was still in the art room, so he got to play a little longer.  This was great because if we had to spend any more time in the infusion pod than we had to, I think I might have started having tantrums.  By the time his anti-nausea med and benadryl pushed, Logan was ready to conk out.  You can really see the tired hit him like a brick wall.  He got to curl up with Grandma in the art room and have a good nap.  He was knocked out for probably an hour while we waited... and waited.... and waited for his chemo.  While he napped, he get a little feverish but slept and sweated it out pretty quickly.   Finally, 4 hours into our appointment, we were in a pod ready for infusion.

Infusion was standard and long.  Logan did a great job just hanging out.  I was a little worried since he had already napped away most of the waiting, that the waiting through infusion would difficult for him. I really enjoy that he usually naps through the infusion.  It's amazing that he knows to just sit and wait.  For a 3 year old, to sit for hours and not fuss, it's a miracle.  Once we were done with all the meds, flushes and snacks in my bag, it was ALMOST time to go home.  One more thing we had to take care of, the flu shot.  For Logan, getting the flu shot is a risk.  For one, his immune system is compromised so his body might not process the vaccine like it is supposed to.  Additionally, Logan is allergic to eggs, and this is known to be problem for having an allergic reaction to the flu vaccine.  Despite the risks, the risk of him getting the flu with a weakened immune system is MUCH worse, so it was time for the shot.  (He definitely could NOT get the nasal spray as that is a LIVE vaccine and would definitely make him sick).  He wasn't happy about it, but who is?

All in all, another long day at the hospital done, and another treatment closer to, hopefully, taking care of these tumors. Thanks to my parents for making the trip down to spend this long day with us.  I know Logan really enjoyed having them there for him.

Weekend Review

It's been a busy few days for us.  Mostly happy and good.  They boys have been able to have fun and do exciting things, which is a nice change.


Wednesday:  The boys' school held it's annual "Trunk or treat" event.  It's always been a great Halloween celebration for the kids and they have so much fun.  For those not familiar with a "Trunk or Treat" (I know I wasn't until we went to our first one at this school), cars are parked around the parking lot with trunks opened and decorated. The kids get to go around the parking lot and trick-or-treat from trunk to trunk.  This year is the first year we have provided a trunk and Parker and I had a great time working on our trunk decorations together.  Happy to say to was a huge hit!

Picking raffle winners

Also at the Trunk or Treat this year was an amazing out pouring of support for our family.  One amazing family organized and ran a raffle to raise money to help support us.  With local businesses donating gift cards and prizes, they were able to raise an incredible amount to help defray some of our tuition and medical costs.  This remarkable gesture of kindness, not just from the family that organized it, but also by all the families who participated, is something that I will never stop being thankful for.  I wish I had better words to express just what this means to us, that people care so deeply and want to do so much to help.  It is truly incredible.

Thursday: Arriving home late Wednesday night, Logan was covered in hives, so Thursday he was home with me.  We have only ever seen this reaction in him before when he eats eggs, and we are pretty certain he did not eat any eggs.  He has never had a problem with food that had egg in them, but straight up egg or food with high egg content, is something we have always avoided (ex. quiche, popovers, etc).  Our first thought was naturally the chemo.  This new medicine has a high risk of allergy which is why them give him benadryl prior to treatment.  While it would be strange to have a reaction this long after the dose (almost a week), it is certainly something we will look out for again and discuss at length with the doctors this week.

This day was a particularly difficult day with Logan in terms of behavior.  Being home with him all day, I struggled with his tantrums, lack of sleep but clear exhaustion and overall bad behavior.  This is a particularly difficult situation to be in as a parent.  On the one hand, he is "sick" and I want to show compassion to his situation, but on the other hand, we still have expectations of him to do the right thing.  Just because Logan is going through this difficult process, we do not allow that to be an excuse for bad behavior. He is held to the same standards as before and he still manages to find himself in trouble more often than not.  Due to Logan's behavior on this day, he had a "limited halloween".  While he did go out with Ryan and Parker for "trick-or-treating" (I stayed behind to pass out candy), he was not allowed to get the candy.  Yeah, I know, we are mean parents!!

Friday: Still with the hives in the morning, it was day 2 home with Logan.  I changed up my strategy a bit and was able to avoid some of the bad behavior and get a GREAT nap out of him.  FINALLY.  We made it though the day alive and got to spend the evening at a group play-date, which we also survived.  All in all a good day.

Saturday/Sunday:  With family in town, we set out to celebrate Parker's birthday.  Saturday was mostly just spending time with family and getting ready for the party.  I even got some time to spend out of the house with Ryan.  That doesn't happen often enough.  Sunday, we had a great time celebrating Parker.  Being a big brother is hard enough (I assume, since I have never been one) but being a big brother in this situation is, I'm sure, that much harder.  Sitting by while your little brother gets all the attention and "special treatment", I can only imagine how he feels.  It was so important to us to celebrate Parker and make sure he knows just how special and loved he is too.  I'm so glad he had a GREAT time with his friends and was able to let loose and enjoy his day. 

After the first treatment

Logan has done remarkably well on his new chemo.  Aside from a couple of "close calls" during his infusion, he has not really shown any effects of the chemo.  If anything, Thursday night and Friday,  he was hyper active.  He is a very active child and his attention is something that has been in overdrive from day one.  I didn't think it was possible to be any MORE hyper active, especially on chemo, but somehow he managed it.  He was nonstop for a good 24 hours afterwards.  Also, his appetite is clearly back.  It's good to see the "old Logan" back but it is proving to be a challenge keeping food coming as quickly as he is eating it.  When he gets a meal or a snack, he is already asking for the next one before he is done eating the first.

Friday night he started with a low grade fever, which peaked at 100.5, but he was able to sleep it off and there was no need for the ER, which was good because we didn't have car.  We were planning on going up to visit family on Saturday, but I just didn't feel comfortable leaving home with the potential for the fever to come back, so Logan and I stayed home while Ryan and Parker ventured out for the rest of the weekend.  Logan managed ok the rest of the weekend with low grade fever around 99.6.  He was extra cranky and battled sleep, but otherwise, an uneventful weekend.  I'll take it.

The sleep thing is starting to be an issue and it's something that we are going to have to work out before it becomes a real problem.  Logan is falling into an undesirable pattern of sleeping.  He gets up super early, sometime multiple times a night (between 2AM-6AM) and fights going back to sleep.  Come nap time after lunch, he barely naps, usually 30-45 minutes.  All attempts to make him nap longer are met with tantrums and screaming.  No he's not tired at all!  By 4PM he is exhausted and falling asleep no matter what he was doing. He can't even function. I never know where/when/how I'm going to find him asleep. This lack of sleep is definitely showing in his behavior. He is so quick to meltdown with crying, screaming, tantrums.  We're going to have to figure out how to get the right naps and sleep.  I would love for him to nap more during the day, but not at the cost of him sleeping at night.  Hard to tell what's right. And I'm sure it's not all related to the chemo, but partially (if not all the way) related to him being 3.

Today, Parker had to go for his annual check with the pediatrician.  I'm pretty sure this is the first time in a year that Parker has been to the doctor, and last year did not go well.  A year ago, he was hysterical over just having to take off his shirt.  He has grown a ton in the past year.  He did a GREAT job at the doctor and everything came out "perfect".  It came time for the flu vaccine, and because Logan is on chemo, it was recommended that Parker not get the nasal mist vaccine and instead get the shot.  Sorry Parker.  He took it like a man, but afterwards milked it for all it's worth.  You would have thought it was a gun shot and not a flu shot, the way he is acting. I know it is a traumatic thing for a kid (and some adults.... you know who you are) and it's not right to say it, but deep down part of me thinks, "It could be so much worse, if only you knew what your brother goes through every week."  Instead, I praise him about how well he did and how strong and brave he was.  It was difficult for him and that's all that matters.