Month: May 2017

Strength

We are coming off a week of absolutely amazing news.   In a matter of seven days Logan underwent two extensive brain surgeries where the doctors were able to resect 95% of his tumor!   This is everything we, and all of you out there, have been praying for (and boy do we have prayers out there)!

However, as everyone is on an incredible high there have been a fair number of lows.    These lows have brought us the same thought over and over again…. HOW DO THEY DO THIS?

In two months time, Kevin and Jen have become hospital parents.  They have placed their “normal lives” on hold to focus on Logan’s battle.  They have fought through Logan’s many surgeries, chemotherapy, infections, seizures and high fevers.  They have learned exactly what symptoms to look for and to be concerned about.   And let us tell you, they are doing an AMAZING job!

One night when Logan wasn’t following Jen.  She knew to immediately call in the nurse because something was very wrong.  The doctors came and Jen was correct; his shunts were failing.  Logan was taken to surgery that next morning to have the shunts removed and have bilateral external drains placed.  During this time of having these drains Logan needed to lay flat because the drains needed to remain level.  One day, Logan began to vomit.  What does one do with a baby who is laying on their back and starts to vomit? Easy, right? Just turn them to their side!! Well…not so easy in this case because of the drains, and Logan needing to remain level.   In a matter of one second Jen jumped up came clear across the room, turned the drains off and turned Logan on his side.  It was truly something to watch her know exactly what needed to be done.  All while I stood there frozen!

Along with the endless hours spent at the hospital caring for Logan have come relationships with other hospital parents.  They share a common bond…they are all fighting for their children.  While every child’s battle is different, they all pray for the same outcome.  Sadly, within this week, as Jen and Kevin were getting good news about Logan, another parent was receiving the worst possible news about their child.  Jen had become very close with this mother whose daughter has since lost her battle to this wretched disease.  We watched as a piece of Jen;s heart break.  So many emotions were happening…she was feeling elated at the news of the 95% resection, and feeling a sense of terrible guilt for her happiness, because she knew her new friend was just upstairs saying “goodbye” to her baby girl.  The duality of hospital life was never more present than in that moment.

Jen describes this time as “the worst roller coaster ride of your life!”

How do Jen and Kevin do it? How have they been so strong? How have they continued to have such faith? How do they have the strength to keep fighting?

Well, she says the answer is…. because they HAVE to! And if you ask us, we truly believe that is the very attitude that continues to help Logan do so well…because he HAS to!!!

That is why we will continue to be #LoganStrong

We, Jen and Kevin’s friends, have sat on the sidelines, watching our friends go through a nightmare we can only imagine…and really, we can’t even imagine it.  We constantly ask one another how they continue to stay strong, how they do it, how any parent who has a child with a life-threatening illness keeps going.  Jen says it’s because they have to.  While we know that this is the attitude that keeps them strong, and helps Logan to fight, we also are very aware that they don’t have to.  There are people that, for whatever reason, can’t.  We see it when we visit, and there’s a baby crying, alone, in the room next door, because their parent couldn’t.  Jen and Kevin have to, because that is what is in their hearts.  They can’t imagine this any other way.

As friends, we come and go to the hospital.  As parents, they barely leave.  I can tell you, personally, there have been times when I’ve just barely gotten to my car before breaking down, and just sobbing at how unbelievably unfair this is.  I then turn on my car, drive home, and go to sleep in my own bed…we leave the hospital.  Jen almost never leaves, and when she does, it’s for a moment in time.  Kevin leaves to work, and even then, his mind is on his wife and his baby, and he is back at the hospital as soon as he can be.

How do they do it? How do parents handle this kind of fear? How do Jen and Kevin sit through the endless stream of words that come from the doctors’ mouths? We’ve been in there a couple of times for both good, and not-so-good news, and after a while, the words seem to blur together.  As our minds are racing, and not knowing what to think, out comes a completely logical, and on point question from Jen.  One that we likely wouldn’t have thought of until long after the doctor was gone.  It is this kind of strength, tenacity, and presence of mind that we truly believe has helped Logan get to the point he is…with a tumor that the doctors initially had very little hope of curing, to having 95% of it resected, papers already being written up about this little miracle, Logan consistently proving the doctors wrong, and the thought of being cured being a realistic goal.

How do they stay sane? Four walls can close in on a person very quickly.  How do they do it? How do they watch their baby go through this? Well, like Jen said, because they have to…there simply isn’t another option, in their hearts.

They are blessed to have both sets of grandparents around, and available, and the outpouring of love from the community has been a tremendous boost for them, as well.  They cannot wait for Logan to be old enough for them to tell him the stories of people that pulled together to help him!

So, how do they stay so strong? Love.  Faith.  Tenacity.  Perseverance.  Strength.  They are two remarkable people, and it shows in the eyes of their amazing little fighter, Logan.

Love,

Colby & Ali

a.k.a. Aunt Coco & Angel Ali

Posted by MommaFoggAdmin in Logan, 2 comments

Surgery

I don’t even know where to begin. These past couple of weeks have been another crazy rollercoaster ride. On Tuesday night April 25, around 11pm, Logan stopped tracking (following) and was just in a trance like state. I knew for a few days prior that there was something wrong with his shunts but we needed to get through round 2 of chemo. They ended up doing an emergency CT scan and shunt series x-rays later that evening. They also hooked Logan up to an EEG machine to see if he was having seizures. Then around 4am on Wednesday they ended up tapping (draining) his shunts bedside and released about 30cc’s of CSF (Cerebrospinal fluid) and he immediately went back to tracking. This is how they knew he was in shunt failure. It was like a catch 22; the chemo was working but the particle from the tumor were causing the tubes from his shunts to back up and stop draining. Around 7am, they brought Logan in to the OR to remove his shunts. They tested his CSF and sent his shunt tubing out for testing to see if there was an infection. Luckily, to date, neither the shunts nor his CSF are infected! The concern, however, was because Logan had an incision on his belly from the initial shunt placement that became infected and the doctors determined that if we waited any longer to remove the shunts that in a day or two you could have seen the tubing through the infection on his belly….awful!!! (His belly was not healing very well after infectious disease narrowed down what antibiotic to use). So as of last Wednesday, Logan has external shunts and is in the PICU. He needs to remain in the PICU as long as his shunts are externalized. They were initially going to re-internalize his shunts last Thursday, but after Dr. Adamo (Pediatric Neurosurgeon) and Dr. Weintraub (Pediatric Hematologist/Oncologist) spoke, they decided to hold off and move forward with partial tumor resection. It’s best that the shunts are external while they attempt to remove part (if not all) of the tumor.

That brings us to the past few days..I have been an emotional wreck and sick to my stomach since they decided on surgery and went over the risks. Now, don’t get me wrong, this has always been the plan….2 rounds of chemo, surgery to resect and then 3 more rounds of chemo. But this is the most scared that I have been since the day Logan was diagnosed. The chemo has shrunk the tumor significantly but is still pretty large for a baby his size. Congenital Glioblastomas are very aggressive and very vascular.

There are other cases that show that partial removal followed by more chemo has had good results in attacking this type of tumor. Kevin and I have the utmost trust and respect for Logan’s doctors, but again this is all very scary.

Two of the biggest risks are:
1. Logan could bleed out uncontrollably and not make it off the operating table.
2. The tumor is pushing on Logan’s left frontal lobe and they aren’t sure if it’s just pressing on it or if it’s actually invaded that area. Either way, he could come out of surgery not being able to use the right side of this body. Whether it be permanent or temporary, we don’t know. Could last a few weeks or a few months.

The good news is if the latter occurs, he is a baby and his brain is still developing so there is a great chance he will recover. Meaning his brain will grow and compensate for the parts that are damaged. Where if this were an adult, we would basically be screwed! His developmental pediatrician, Dr. Lucas, is very happy with how Logan is already doing and said he is neurologically sound right now, and is confident we would be able to overcome the second outcome.

So, needless to say, I am a hot mess. I am trying to stay positive and they have been telling us worse case scenarios since the day Logan was born and he has overcome and proven them wrong each time. But even the thought of losing my son is killing me. I am bawling as I type these words…please God save my baby!!!

I do, however, find peace in knowing that Logan is here for a reason, and we will fight for him no matter what. He has the best doctors, family, support and prayer warriors we could ever ask for.

I want to give a big thank you to my friend and brother Jason Twombly for always being a text or phone call away to pray with me and for Logan (even at 3am). Thank you, Karen Laing, for inviting me to WOW (Women of Worship) yesterday and introducing me to some amazing people to pray over me, especially Bethany Hoyt. And I am and forever will be grateful for Michelle Brooks…I love you!

With that being said, Kevin and I will be having final conversations with both Dr. Adamo and Dr. Weintraub on Monday to discuss surgery. As of now, surgery is scheduled for Tuesday. I will keep you all posted if anything changes but please send ALL your prayers and positive thoughts to Logan and his family on Tuesday as that

Posted by MommaFoggAdmin in Logan