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Category: Daily Updates

Weak and tired…..

Weak and tired…..

Logan had his check-up with his doctor yesterday.  He has not been feeling very well.  Fevers, very tired, and no appetite.  The nurse did a nasal swab and it tested positive for two different viruses.  He has a cold/chest virus as well as a flu strain.  Unfortunately both viruses just need to “run their course” and are not treatable with antibiotics.  The positive is he is at the tail end if the sickness.

His leg is going better.  Still sore but no longer requires crutches or pain medication.

At this time we will continue to constantly communicate with his team of doctors and the plan is to re-scan the first week of March and reevaluate then.

This past weekend we took an extended long weekend and spent time as a family in one of our favorite places Seabrook, WA.  It was very relaxing and great weather.  Logan even got in a little driving time on the beach!  We played board games, went on short walks, drove on the beach, went swimming among somethings.  It was a much very needed getaway.

Loganfest X is almost here!  Click on link to find out more!  Thank you Kalles family!

#loganstrong

PAIN……..

PAIN……..

Unfortunately Logan is starting to experience more and more pain in his left hip/leg.  So much so that he is now requesting pain medication.  As many of you know the strength of this teen….he must be hurting.  He can no longer put full weight on his leg and is relying on crutches to get around.

We will meet with his team tomorrow to see about what can be done.  We are assuming they will have an x-ray of the site to see if he possibly may have broken his femur again.

In our last meeting with his team we discussed doing “targeted” radiation on the tumor in his hip/leg to slow down the growth.  Everyone decided based on how Logan was feeling (great) that we do that upon his return from visiting family in upstate NY.

With the pain now coming on so aggressively we had to cancel the trip back east as we do not know as of  right now what we are even doing day to day.

Logan continues to stay positive (even though the pain meds  make him a little grumpy;)).  Right now his days are filled with X-box, friends, & family (in that order).

Thought and LOTS of prayers appreciated.

#loganstrong

Some normalcy…….

Some normalcy…….

Logan has been feeling great.  Some occasional pain in his hip and rib area comes and goes but that does not stop him one bit.  He has been going to school everyday, hanging with friends….basically going non-stop.

This weekend he is going to the mountains for youth group camp for the weekend.  We are then taking a small family getaway to Suncadia.  After that Mom and the boys are going to head back east to upstate NY for a week to see Kelly’s family.   Busy next couple of weeks!

Current plan is to meet with Logan’s team weekly.  Scans are scheduled for first week of March to see if cancer has progressed and if so where.

Pictures above are from his Porsche 918 car experience….he had a blast!

#loganstrong

One day at a time…….

One day at a time…….

We met with Logan’s team this morning via conference call.  Currently we are all in agreement for Logan to continue being a teenager and enjoying the daily activities that accompany that i.e. girls, friends, girlfriends, Xbox, being physically connected to your phone, ignoring your parents, sleeping a lot, staying up as late as you can etc.

The team/family will evaluate things daily, weekly and decide next steps based on what is presented to us via new trials and/or Logan’s condition.

His last experimental treatment/infusion was on December 21st.  In order to qualify for other trials one of the criteria is that other experimental drugs are out of his system.  This particular drug takes up to 80 days.  This puts us about the first week of March.

We still can move forward with the antibody treatment at any point as this is not considered experimental.  The goal/hope of doing this as stated in previous blogs would be to hopefully stabilize the cancer.  The downside is he feels awful for as much as 3 weeks and it may not do anything.

Right now one day at a time enjoying family and friends…..

#loganstrong

Decisions no parents should have to make…..

Decisions no parents should have to make…..

We have met with Logan’s team and at this point don’t know what to do.

Options are to have Logan do the antibody treatment again with 1/2 the chemo but this treatment possibly could do more harm than good.  Doing this again would also DQ him from other trials if available.  There is also a small chance this may stabilize the cancer.  He would start this on Monday.

Do nothing right now and hope another trial opens up that Logan would qualify for but risk the cancer growing.

Logan is feeling and looking great.  I so wish we could just hit the pause button and live life as is.

Whatever the decision we will second guess ourselves….forever.

I wish this heartache and pain onto nobody.

#loganstrong

Another week of scans and anxiety…..

Another week of scans and anxiety…..

This Wednesday/Thursday we are up at Children’s again getting scans and a bone marrow aspiration to see if we continue in the current study he is in.  If you were to conduct a visual scan of Logan you would never guess anything is wrong.  He feels and looks great!  He actually for the first time in 6+ months went out in public yesterday not wearing a hat!  His hair has grown back and he looks amazing.

Holidays were/are continue to be full of mixed emotions.

I will continue to keep everyone posted….Thank EVERYONE for the continued thoughts and prayers and Happy Holidays to you and your family from the Lewis Family.

#loganstrong

Logan qualified for trial…..

Logan qualified for trial…..

Good news…Logan qualified for trial explained in last blog post.  We start Wednesday.  We had a pretty anxious weekend…….as of last Friday his team of doctors were unsure because his thyroid was showing ranges that could disqualify Logan from trial leaving us with limited/no options moving forward.

We did not see our teenage boy most the weekend as he stayed the weekend at a friends staying up all night playing video games.  Some normalcy!

#loganstrong

What’s next…..

What’s next…..

Thank you everyone for the thoughts and prayers.  Obviously it has been a tough last 19+ hours.  Our family is doing fine and are looking this in just another speed bump in Logan’s recovery.

More importantly Logan continues to amaze with his positive attitude.  This morning he was commenting on how many of his friends on Instagram were wishing him well and re-posting #loganstrong.  He does not talk about it much but really appreciates the support.  I warned him he better be ready for lots of hugs at school today and he just smiled his amazing smile.

So what’s next?  We are looking at trialing an experiment called ADVL1412.  You can click on that to find out more about it.  Basically our goal now is to keep the cancer from growing and wait for other options/trials to open up.  The trial Logan will be on does not include any chemo so there are minimal side affects and no hair loss.  His counts should also not be impacted which will keep him possibly qualified for other trials.

We will be starting this trial next Wednesday, December 7th.  We will re-scan the week after Christmas.  For him to continue on this trial we cannot see growth/spreading of the cancer.

One day at a time…..

#loganstrong