Month: April 2017

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