Logan

Round 3 – 3 months since Logan’s diagnosis (3/8/17)

This post comes with a disclaimer that there will be no filter.  I have been feeling so many different emotions lately that I just need to get it out.  So I will apologize in advance if I offend or upset anyone.

Three months ago today our lives were turned upside down.  On one hand I can’t believe it’s already been three months but on the other hand I can’t believe it’s only been three months.  I can say, that this is NOT what we at all expected when we were planning for a baby.  But, I still believe, to this day, that this was meant to happen to us, that Logan chose us for a reason.  Don’t get me wrong, this SUCKS like BIG TIME but it is what it is and you push forward.  There are days, like yesterday, where I just stand in the shower and cry and beg for his pain to go away and to be healed.  Then I pick myself back up and keep going.

This week and this round of chemo has been the toughest so far.  My in-laws have been helping so much (so grateful) but they had to go back to North Carolina for the week. They have been here since Logan was first diagnosed.  So, this week it’s pretty much my husband and I, my mom is helping and so is my dad.  But not having my mother in law around is tough, she helped with laundry and meals.  Plus, Kevin is back to work full time so it’s really just me for about 20 hours a day.  Don’t get me wrong, I wouldn’t be anywhere else…but it’s very tough!  These 4 walls close in on you quick, there is only so much “extra-curricular” activities I can do.  I sit next to Logan’s crib while he sleeps or he sleeps on me.  I play with him, sit him up and move his arms and legs.  He also has PT, OT and Speech Therapy almost daily as well as different doctors coming in at different times during the day.    I can’t work (I’ve tried), it’s hard to read or listen to a book or focus on anything other than him.  I’m typing this while Logan is sleeping and getting a blood transfusion.

I’ve never seen a baby dry heave or spit up bile before…it was awful.  This round of chemo has been harsher on Logan for a couple of reasons.  He’s coming off of two major brain surgeries AND this is the third round of poison he is getting.  I have to say though that my kid is A-M-A-Z-I-N-G, he never screams or cries uncontrollably.  He just fusses or moans to say he is uncomfortable…thank god he is calm natured like my husband.  Don’t get me wrong though, he will tell you exactly like it is just like his mama!!  😉

Now here is where it gets real.  When he was first diagnosed on March 8, my phone, text, FB, messages were blowing up…I was very overwhelmed, gratefully overwhelmed.  But now, three months later, I’m lucky if I get one message (text, call or FB) a day.   It’s like you are a celebrity in the beginning (right Michelle?!?!) then nothing.  People you thought would be there for you aren’t and those that you never thought would be, are.  Then there are those that either don’t say anything or say the wrong thing.  There’s people that you give every opportunity to come visit but never show up then there are those that just show up at the worst times.  No one could ever prepare for this situation, no matter what side of the coin you are on. I totally get that everyone else has their own lives and their own thing going on but when you are trapped within 4 walls for days on end with a sick child with only a quick treat of a Starbucks coffee once a day (if you’re lucky to get out)…..it gets hard, real fucking hard!  I have totally lost ALL patience for minor things….like I am more of a bitch now than I ever have been.

I get people don’t want to bother me (us) at this point but even a quick text or message that says “Hey, I’m just thinking about you guys” or “you are in our prayers”.  Saying and doing nothing I feel is worse.  But with those quick messages, I can’t always respond, they are just nice to see!   I guess there is no right or wrong on either end of these circumstances.  It is what it is.

This situation really makes you appreciate what is important in life.  I find joy in going home just to take a shower and get ready in my own bathroom.  I enjoy driving down the road with my sunroof open on a nice day.  Hell…I would enjoy walking barefoot in a thunderstorm right now!  I am missing what every first time mother experiences…it fucking sucks!  I am angry, I am bitter, I am hurt, I am upset but I am also exactly where I am meant to be.  I love my son more than life itself and would do anything he needs to get better.  I HATE that he is going through this but am grateful that he will never remember…boy, this kid is going to be spoiled for the rest of his life!

Thank you for letting me vent…this is actually not as harsh of a post as I thought it would have been.  I’m having an okay day but if I would have wrote this last night, oh boy…the tone would have been way worse!

We truly appreciate the outpouring of love and prayers we have been receiving, that is really all we ask for.  Thank you for allowing us to share our story with you.

Please continue to pray and share Logan’s journey to help raise Childhood Cancer Awareness.

 

 

 

Posted by MommaFoggAdmin in Logan, 5 comments

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

End of Round 2

Today was the last day of Round 2.  This round has been very rough on Logan and the rest of us for that matter.   Round 1 was only 75% of the recommended chemo dose (they do that for all babies under 6 months old) and they bumped him up to 100% for Round 2 because he handled the first round so well.  One of Logan’s incisions from his shunt surgery got infected and he spiked a fever.  So, between the increased dosages, a corner of the incision re-opening, and his counts being down, unfortunately infection and fever is a risk with a compromised immune system.

Each round of chemo is 21 days.  He receives 3 different kinds on day 1, 2 and 3.  Then he receives a small dose on day 8 and again on day 15.  Day 21 is when they would start the next round, following the same schedule, as long as Logan’s counts come back up.

Logan was okay the first week, with chemo on day 1, 2 and 3.  Day 8 wasn’t bad but that’s when his counts started to drop.  We noticed the area around his incision red and swollen on day 10.  Not to mention, when they changed his bandage they had his port line rubbing on it….ugh!!!  By day 11 it looked worse and I had to be crazy hospital mom and demand an ultrasound after they (the doctors) were back and forth as to whether or not to do one.  Thankfully the ultrasound showed that it was just superficial; cellulitis was the diagnosis.  They put him on two different antibiotics and Tylenol when needed.  Day 12, Logan was in so much pain, he slept pretty much all day.  I was heading home that night (my mother was staying with him) and wasn’t feeling right about it but went anyway.  Before I went to bed, I made sure my ringer was up, normally I turn it off.   Thankfully I did because I got a call at 2am from my mother that Logan was having trouble breathing.  That was the scariest call of my life.  Kevin and I immediately drove to the hospital.   They had to call a ‘Rapid Response’ on Logan, which is a step down from a ‘Code Blue.’  They determined his breathing difficulty was because he was in so much pain.  They had to give him morphine, and he slept through the night.  Kevin went home around 3:30am and I stayed at the hospital with my mother. Of course, not sleeping, just watching him to make sure he was breathing okay.  I finally went home around 11am Saturday, getting only about two hours of sleep.  I was able to get a few hours’ sleep during the day, but that definitely wasn’t enough; I was completely exhausted.  Kevin had gone to the hospital around 3pm to see how Logan was doing, and every time I was on the phone with Kevin, I could hear Logan in the background crying.  My poor baby was in pain and I wasn’t there to help him.  Thank god I was able to text Ali, who works in Dr. Adamo’s office and she was able to get a hold of the Neuro doctor on call to go see Logan.  That definitely made me feel better, but I was still a wreck!  There is no worse feeling in the world than feeling helpless when your child is in pain.  I wanted to go back to the hospital but I was beyond exhausted and would have done Logan and myself, no good!

Day 14 was better, he finally ate, after not eating for almost 3 days.  He still wasn’t eating as much as he normally does, but a little is better than none.  Because he wasn’t eating for a few days, some of the doctors suggested to put a feeding tube (NG tube) in, which I refused each time.  Why would I put a foreign object down my child’s throat when his immune system is compromised, when I know he just doesn’t feel well and will eat again in a few days?  Same thing happened during Round 1.

That brings us to today, day 15.  He got his final dose of chemo for this round.  His incision looks worse but because his counts are going back up, they said it will look worse before it gets better because all of the good cells are attacking that location.  He has had to have 3 platelet transfusions and 1 blood transfusion this round.  His incision looked good, then bad, then ok to worse.  I wasn’t there for him for over 24 hours, and I am going back to work tomorrow.

Let me now share with you the emotions I have felt over the past few weeks, some of which I have experienced in the same day….

  • Angry
  • Happy
  • Sad
  • Bitter
  • Pissed
  • Upset
  • Blessed
  • Hopeful
  • Defeated
  • Loved
  • Scared
  • Weak
  • Strong
  • Betrayed
  • Lonely
  • Exhausted
  • Alone
  • Afraid
  • Anxious
  • Jealous
  • Confused
  • Hopeless
  • Weary
  • Brave

 

I’m sure there are more but that gives you an idea.

 

I do not wish this experience on ANYONE.  I do, however, still believe with all my heart that Logan is meant to be here and we are meant to be his parents and to face this.  We will NEVER know why or how but Logan WILL ALWAYS know LOVE!  That is all that matters.  Kevin and I, as difficult as this has been between us as well, will ALWAYS support and do what’s right for our son.

This is the worst rollercoaster ride I have ever been on.  There are days where I just want to cry, but know that I must stay strong for our son.  I give him pep talks every day and I swear he understands me.

So, now we just wait for Logan’s counts to go up.  Once they do, hopefully by early to mid-next week, they will do an MRI to see what the tumor looks like.  Best case scenario, the tumor has shrunk enough to be removed.  Worse case, we start Round 3.    We are all hoping for the retraction of the tumor because this little guy needs a break from chemo!

And the emotional rollercoaster continues…

 

Posted by MommaFoggAdmin in Logan, 6 comments
End of Round 1

End of Round 1

I have been trying to write this post all week.  I started on Monday when Logan had his last dose of chemo for Round 1.  Then we were informed that we could go home for a few days because his counts came back up quicker than they anticipated.  So, we have just been enjoying time home with our little fighter since Tuesday.  Tonight is our last night home so I wanted to make sure I updated you all on what’s been going on behind the scenes, per se.

Exactly one month ago today we found out that Logan had a brain tumor, and were pretty sure it was malignant.  It’s been a rollercoaster ride to say the least!  Kevin and I are beyond grateful for the outpouring of love and support we have received thus far.  Please continue to send positive vibes and prayers our way, we are just in the beginning of our fight!  We are also so proud of this little fighter we get to call our son.  He is so strong and resilient and proves the statistics wrong time and time again.

Now to get you all caught up…..

Kevin went back to work last week.

My father in law had to go back to North Carolina for a week or so.

Dani, Ali, and Colby put on a very successful fundraiser.

And I had a break down…I think everything just finally settled down enough for me to truly feel and think about what was going on.

I had been crying pretty much all day Sunday into Monday so I reached out to the social worker in Logan’s doctor’s office first thing Monday morning. They told me they were there when I needed to talk and I promised them I would reach out when I was ready to talk and I was (I still am).   I met with Courtney (the social worker) and Dr. Weintraub, Logan’s oncologist, on Monday afternoon (before we found out he could come home for a few days.)  They asked what my biggest concern was and I said “I don’t want my son to die!”  I have been so strong and confident up until then.  They said it was normal and I will probably always feel this way.  But they are still “cautiously optimistic” and he is doing so well right now that they aren’t concerned.

The thing is, I don’t want to feel that way nor think that way.  I am a firm believer in what you think about, you attract; that thoughts become things, but I can’t get that out of my head, even to this day….it sucks!!!

The other thing that sucks about this is that because Logan’s condition is so rare there aren’t any support groups. There aren’t really any support groups for children’s cancer, in general.   Logan’s tumor is so rare that there are less than 100 documented cases.

Kevin has been absolutely amazing and so supportive.  Anytime I get upset or mention that I feel that way he turns it around and tells me that Logan is going to be fine!  He too believes that you get what you put out there!

I am a very open person in general, and I think that is one of the reasons why I have chosen to be so open in sharing Logan’s fight, our story (with my husband’s permission, of course) for prayers and positive thoughts.  I have never believed more in the power of prayer than I do now.  The day we found out that Logan had a congenital glioblastoma and the doctors had no hope, I posted on Facebook and asked for prayers.  Two days later, the doctors told us they were confident with the treatment plan they received and were now “cautiously optimistic.”  Then this past Sunday I posted and asked for prayers for Logan’s counts to go back up and they went up so quickly we were allowed to come home for a few days.  So please, I can’t thank you all enough, and continue to ask for more prayers and positive thoughts as Logan is truly in a fight for his life.

I also need to give a shout out to JoDee Kenney from Spectrum News 9.  She reached out to me and wanted to help us share our story.  Not only are we fighting for our son’s life but we need to bring awareness to pediatric cancer.  Only 4% of federal funding goes to Children’s Cancer Research…more money is spent on research for the cancers that a lot of times are preventable by life choices.  Not that those aren’t important as well, but what about children being our future?   Maybe if there was more funding for Children’s Cancer Research, one of the kids they save could find a cure for cancer!!

Kevin and I firmly believe that Logan chose us to be his parents for a reason. We feel that we are strong enough for him, and for each other, to get him through this and past this.  We know and are surrounded by the right people and a great support network.  And yes, we believe that if God brings you to it he will bring you through it, and that God doesn’t give you more than you can handle.  No matter how much it sucks, everything does happen for a reason!  Not only has this whole situation been surreal, it’s been very ironic.  The fact that I work for Aflac and sell cancer insurance for a living is one of many ironies.  Thank GOD I added Logan to our cancer plan when he was born…thinking we would never have to use it.  Aflac also has their own Children’s Cancer Center in Atlanta, whom just so happen to write the chemotherapy treatment plan that Logan is receiving.  I also am a member of the Capital Region Rotary Club that donates toys to the Children’s Hospital at Albany Medical Center every year.  We will now be recipients of that this year.  One of the women I am in Rotary with is engaged to the General Manager at the Hilton across the street from the hospital and comps us a room whenever he has availability. He has also known my father for 30 years.  My in-laws are retired and drove up from North Carolina immediately to help us and have been taking care of our house, animals, laundry, etc.  Like I said, many ironic things, along with all of you who have reached out, and surrounded us with support we couldn’t have imagined.

So, that is what’s been going on.

Thank you all who have donated both monetary and otherwise.  We are so appreciative and grateful for every single one of you.

Please keep the prayers and positive thoughts coming!

We are all Logan Strong!!!!

Posted by MommaFoggAdmin in Logan, 6 comments

Thank you letter – Logan Strong Fundraiser 3/29/17

To everyone who has taken the time out of their day to be here, to show us love and support, and to help us in this most difficult time…thank you.  It doesn’t seem enough for us just to say “thank you” when so many of you have gone so far above and beyond anything we could ever have imagined.  “Thank you” seems so simple when we have real faith that all your love, support, prayers, and good vibes have truly played a huge role in just how positively Logan has responded to his treatment.

Christmas 2016

We knew, from day 1, that Logan was a fighter; so we also knew when we got this horrendous news, that he would fight this, and we would fight for him, every single step of the way.  What we didn’t quite account for were the added warriors we would have by our sides.  It’s so surreal and ironic that this is happening to our son.  We have always been the ones to give back and help others, it’s very overwhelming and gratitude doesn’t begin to cover it.  You all are helping to be a part of healing the most precious piece of our hearts.  You all are playing a part in smacking the puck out of the cancer in our sweet boy.

While we wish we could be there to see, to hug, and to thank each and every one of you, we hope you understand that we need to be by our boy’s side, every step of this battle…and it is a battle, with Logan being the biggest little warrior we’ve ever seen.  He is fighting this awful disease with his adorable dimples, and his flirty eyes and let’s not forget those eyelashes we are all jealous of.  Who gives cancer a wink and then a punch? Our boy.  And, we have full faith that he will beat it not just out of the rink, but out of the atmosphere, and we’re right beside him to give that extra push it may need.  No one and nothing messes with our boy!

With all sincerity, though, thank you.  You have not just helped lift the financial burden that, unfortunately, comes with having a terrible illness; but you have helped us to realize just how lucky we are.  We will tell Logan, for years to come, the story of how so many people came together just for him.  And he in turn will have some great stories to tell himself!

We love you all, we are beyond thankful to you all, and we will forever hold each and every single one of your dear to our hearts.  Thank you so very much.

And a special thank you to Dani Klahr for organizing this event along with Colby Enides and Ali Lanfear for their help!

We all are #LoganStrong!!!

All our love,

Jennifer & Kevin (and, of course, Logan)

Posted by MommaFoggAdmin in Logan, 2 comments

Logan’s Chemotherapy Plan

Logan started chemo on Monday, March 20. They are able to treat his tumor very aggressively due to his age.  Children, especially babies are able to receive a higher dose due to their resiliency.   Unfortunately the tumor is too big for his little head to be removed at this time.  We are happy to share that the tumor hasn’t metastasized anywhere else.

The plan is 2 rounds of chemotherapy followed by an MRI to confirm the tumor has shrunk enough for Dr. Adamo to remove it.  Then he will have 3 more rounds of chemotherapy to kill any cancer cells that are left followed by about a year and a half of maintenance.

Other good news is that once they remove the tumor, it’s not like an adult where we would have to re-learn how to walk, eat and talk again.  Logan will just learn those things from a different part of his brain.  There are already plans in place to assist with physical therapy and/or any neurological issues that could arise.

He is handling chemo very well so far.  No real side effects (that we can tell).  We think he was nauseous the other day but that is really it.  He is receiving steroids (for the swelling in his brain), neupogen (helps white blood cell count), anti-nausea and anti-seizure meds.  He hasn’t had any seizures but because the tumor is in his brain and is very vascular, this is precautionary.

His chemo schedule is as follows (per round):

  • Day 1, 2 & 3
  • Day 8
  • Day 15
  • Day 21 (new round starts – same schedule)

We will remain in the hospital while he receives chemo and we will not be allowing visitors except immediate family as Logan’s immune system will be compromised due to the chemo.  It is safer and both mom and dad are more comfortable having him monitored by the nurses and doctors during this time.  He’s only 4 months old, he can’t tell us what’s wrong.

We are very happy and confident with how things are going so far.

Keep the positive thoughts and prayers coming.

#LoganStrong

 

 

Posted by MommaFoggAdmin in Logan, 15 comments

Meet Logan

When Jennifer and Kevin got married in June 2015, they knew the next step in their life was to start a family. They struggled with fertility and sought treatment. They were able to get pregnant after one round of treatment. When they found out it was a boy, they were even more elated. They wanted to have a boy and were excited to watch him grow and learn how to play hockey and ride motorcycles like his dad!

Throughout Jennifer’s pregnancy, they were monitoring the baby’s kidneys as one of them was enlarged. At her week 30 ultrasound, his kidney’s looked fine and the doctor said she didn’t need another ultrasound but scheduled one for week 34 anyway. At her 34 week ultrasound, Friday, November 11th, the kidneys were fine but they found fluid on the baby’s brain. From there they ordered a MRI. They took their time scheduling it but thankfully Jennifer knows people (Jane) who know people (Ali) and were able to schedule the MRI for Thursday November 17, 2016. That is when they found that the fluid on his brain was blood. Jennifer got a call that evening from Dr. Mack saying that they wanted her to check into labor and delivery the next morning at 8am. Jennifer just knew that she was going to have a baby the next day somehow!

On Friday, November 18, Jennifer checked into the hospital at 8am. They brought her to a prep room where a radiologist came in and advised her, Kevin and Cheryl (Jennifer’s mom) that they thought Logan had a deadly platelet disorder called NAIT (Neonatal alloimmune thrombocytopenia). Jennifer just knew that at 40 years old with her first baby that God was not going to take him away. The doctors let Jennifer and her family know that they would be prepping her for a C-section, soon, and that if Logan did have this platelet disorder, there was no cure for it. Jennifer kept saying that she knew it wasn’t that, and that her boy was just ready to come out.

Jennifer and Kevin got prepped for surgery, as their family and loved ones anxiously awaited any news. Logan Daniel was born at 2:39PM, weighing in at a whopping 6 lbs 13 oz…with no platelet disorder. They tested him for any and all blood disorders and everything came back negative or normal. He was perfectly fine! Jennifer said, “See? My boy was just ready to come out!” He was then known as the “Miracle Baby” at the hospital….a mother just knows!

The doctors decided to just monitor his condition and a month later (December 2016) the hemorrhage appeared to be dissipating on its own. Logan was also assigned two pediatricians, a pediatric neurologist, a neurosurgeon, a hematologist and a urologist along with physical therapy. On Wednesday, March 8th, 2017, Jen and Kevin brought the love of their lives to get another MRI, just to be certain that everything was still on the same path as before. When the doctor walked in the room, they instantly knew something was wrong. There was something found in the MRI. It was a tumor, and it was aggressive. They had seen no sign of this in the previous MRI’s, the last one being in December. Dr. Adamo, Logan’s neurosurgeon, wanted him admitted immediately, and wanted to biopsy the tumor. Jen and Kevin’s world was just turned completely upside down, and inside out. Everything they thought they knew, had just changed into a world of uncertainty.

The next day, the tumor, which was 1/3 of the size of Logan’s skull, was biopsied, and this was the first brain surgery he would have. Dr. Adamo and his team let Jen, Kevin, and their family know that it would be 4-5 days before they knew any real answers. While waiting for answers, however, Dr. Adamo did know that he wanted to put shunts in the back of Logan’s head, to assist with any swelling of the brain. These would be in for life, making him even more of the little Iron Man than he already was!

Family, friends, and loved ones surrounded Jen, Kevin, and Logan with love and prayers. On Monday, March 13th, 2017, Logan was baptized in the hospital, with family and the godparents surrounding him. It was this day that they all awaited, anxiously, the news about the pathology.

In the early afternoon, Jen, Kevin, their immediate family, and 2 close friends, were called into a meeting room to hear the results. It was not what they were hoping for. Dr. Weintraub, another neuro doctor, and 3 of her staff, let Jennifer and Kevin know that it looked like this tumor was a grade 4 Glioblastoma. These are very difficult to treat, but what Logan had going for him was that he came in much healthier than most kids with this disease. Dr. Weintraub let Jen and Kevin know that she would send his slides off to Boston Children’s Hospital for a second opinion. There were plans for chemotherapy, but the plans were uncertain until Boston weighed in with their opinion.

Jen, Kevin, the family, and friends cried, but did not give up hope. They knew that Logan fought before, and he would do it again. With the faith and hope came a glimmer of light in the sign of a doctor saying she was “cautiously optimistic.”  This is because they found the tumor to be a Congenital Gliobastoma, totally different from a Glioblastoma.  There is a doctor in Atlanta (Children’s Cancer Center of Atlanta, owned by Aflac who Jennifer works for) who has treated this kind of tumor before, and who has seen positive results. This sounded much better than the original news!

This is where they are today. Awaiting more answers, praying, hoping, and knowing that their love for Logan couldn’t possibly be stronger. Jen and Kevin are overwhelmed by the love and support they’ve been shown, and continue to be surprised by this, daily.

We will continue to keep you updated on Logan’s progress, and we ask for your continued prayers, as they seem to be helping, thus far! We thank you, on behalf of Jen and Kevin, for your love and support. Each of you that has taken the time to come here, to read Logan’s story, holds a very special place in Jen and Kevin’s hearts.

Posted by Logan Strong in Logan, 34 comments