Treatment 2

Yesterday we were set to arrive at the outpatient clinic at 10:15am where we wait for the outpatient room to be ready.  This time we arranged for Ethan to come and meet with Layne, the child life specialist, so that she could explain Jake's illness to him.  She explained that Jake has a tumor and that it's called Ewing's sarcoma and that it is cancer.  He asked questions like "Why did he get it?" and "Do we need to get rid of it?" which were really good questions.  He had it stuck in his head that the accident that Jake had in the street is what caused the tumor so Layne explained repeatedly that cancer is not caused that way, and also that he can't "catch" it from Jake.  She gave him a "Beads of Courage" sibling necklace and gave us a kit of beads so that we can give them to him as we see fit.  Layne said that his responses to her explanations were almost text book and that he seemed to grasp the concept with no problem.

I think Jake is starting to realize that he goes to the hospital a lot and he isn't as excited about it as he was in the beginning.  I had to take him for blood work on Wednesday to make sure that his white blood cell count was high enough to receive chemo yesterday and the entire way to the hospital he whined and cried, "Mommy, please don't make me go to the doctor. I don't want to go.  I'm scared."  Again on the way to Egelston yesterday he made the same complaints.  It sucks because he is at an age where there is no good way to explain why.  We tell him that we have to in order to make his boo-boo go away but that doesn't make a dent in his cries.  He repeats it over and over until all we say is, "I know, but we have to."  I just pray that he doesn't remember all of this, or if he does it's just from the pictures that I've taken where he is smiling and happy. 

We got to his room on the outpatient wing at 2:00pm and settled in for our stay.  We got some lunch and waited for the chemo to start.  The nurse began his etoposide and he started coughing, his faced turned splotchy red, and he vomited.  The nurse disconnected the etoposide immediately and called the doctors in.  They said it was an allergic reaction so the decided to halt chemo until morning. They will try another form of the drug (etopophos) that will hopefully not have an adverse reaction.  Jake recovered from the reaction very quickly and has been in a good mood ever since.  

Thanksgiving week

We had a wonderful Thanksgiving week spent with lots of family.  There were definite highs and lows, but overall it was a happy time.  As we sat at the dinner table it was difficult not to think about the possibility that our beautiful little boy might not beat this.  That one year, his seat could be empty.  It’s miserable to think about and I wish that none of us would ever have that thought cross their mind.  The reality of it is that even though it hurts, maybe we should have that thought about our loved ones.  It may not be cancer threatening their lives, but each and every one us will die of something, some day.  So here’s the cliché:  don’t take a single day for granted.   Or, tomorrow is not promised, live for today.  You catch my drift?

Dad, John, Vickie, and I went out for some “Black Friday” shopping and then napped (a lot) that day.  Randy’s Dad and brother came up for the weekend and had the pleasure of helping Randy with his exterior illumination display.  (Raaaaaaandy…the little lights aren’t twinkling!)  Between my Dad, Randy’s Dad, Matthew, and Randy, it only took all day to finish (including breaks).  I know Randy appreciated the help and the kids love it!  That night the boys watched their favorite movie: "The Polar Express" while wearing their fashionable Polar Express shirts. 

Today, Jake had an appointment at the inpatient clinic to check his blood counts and receive a short chemo infusion.  The child life specialist came in to explain how it would be for his port to be accessed and to play with him during the appointment.  He did a bit of kicking and screaming before the nurse accessed his port but most of it was just because he was afraid that it would hurt, but it didn’t hurt because I had put the numbing cream on it an hour before. He blissfully played on the ipad until his chemo was finished.  All that was left was to wait for someone from orthopedics to come and remove his cast.  He was very nervous about having it cut off and kept saying "but, I think it's cool" in hopes that I would abandon the idea all together.  It only took a minute to remove it and we were out the door.  He is having some trouble walking but it didn't stop him from riding his scooter this afternoon.   He is such an awesome kid.

The "How" and "Why"

It has been 5 weeks since we heard words that would change our lives forever, and normal became something completely different.  It was not until November 5th that we officially were told our little man had cancer, but the moment we were told there was concern our mindset and outlook on life changed completely.  I have a good friend that has gone through something similar with one of his children that has given some great advice, and his predictions about how I would feel and act have pretty much been dead on.  Nothing can prepare you for this, no book you can read with instructions, and the emotions that become part of your daily life are everything from sorrow to joy, anger to depression, happiness to sadness, and so many more.

It is only natural that when something this devastating enters your life a particular word begins to enter your mind....

"Why"....

Why is our little boy going to suffer?

Why do our lives have to be turned upside down?

Why do we have to face every parents worst nightmare?

and the worst "Why" of all...

Why would a loving God do this to us?

From the start of this Kait and I kept telling ourselves we would control what we could control, and the quote I told myself over and over again is from "The Last Lecture" by the late Dr. Randy Pausch:

"We cannot control the cards we are dealt, we can only play the hand"

There was a time on November 6th, the day after Jake's biopsy, driving back from school that "Why" entered my mind, and it got the best of me.  I became angry...at life....at God....at everything.  For the first time in as long as I can remember I prayed....like...really prayed.  Not blessing a meal....not going along at church....but really talked to God.  I sat in a pew at a church in Monroe and it all came out....but not once did I ask God why.  Deep down inside I knew there was no answer....there would be no response.

"Why" is toxic...it is something we can't control...and only leads to despair and anger.  I decided that word was going to be deleted from my vocabulary.  Anger is not productive and is going to do nothing to help us get through this.  Instead I'm going to focus on the word "How"....as in:

How can I be there for Jake and my family through this?

How can we use our situation to raise awareness about Pediatric Cancers?

How can I make a difference going forward?

Hopefully others can follow our journey and realize that tomorrow isn't promised, and that these things happen to real people.  Maybe we can all realize that getting worked up over little things just isn't worth it.  I have been as guilty as anyone about letting little things get the best of me, now most of those things seem so trivial, and it makes me laugh to think how much of my life I've wasted getting mad over things that just didn't matter.  Life is precious, and it is short, enjoy the ride.

Now the only why I am willing to ask is:

Why didn't I realize this before now?

So far so good...

We are officially done with the first treatment of chemotherapy!  It was a long two days so it's hard to imagine what the 5 day stays will be like.  Jake only had to have one infusion on Saturday before we could go home but he couldn't get it until around 2:00pm so we waited around for 2:00pm to come.  While we were waiting Jake had two special visitors.  They were clowns from the Big Apple Circus!  One of them blew bubbles while the other played the ukulele and sang a song about Jake.  They were pretty funny and had Jake laughing and having a good time. 

We made it home by 5:30 after stopping by the pharmacy to get all of his new medications.  He has a pain medication since he is very soar from the port placement and also from the bone marrow aspirations.  He has to take an antibiotic every Saturday and Sunday (twice a day), and he has two different anti-nausea medications.  Starting on Tuesday we will be giving him a shot every day in between hospital stays.  The shots will tell his bones to increase production so that he will recover faster from the chemo.  Jake is doing so well with all of this, but he sure does suck that he has to do it.  :-(

Day One

This has been such a looooooooong day, but we feel a sense of peace now that the chemotherapy has started and we are on the path to recovery.  We have an idea of how each infusion will go and we'll gradually become comfortable with it as it is our new normal.

We left the house at 5:30am to get to Egleston for a 7am check-in time.  His surgery to place the port and have a bone marrow sample was scheduled for 9:40am.  We were a little delayed because it is quite a process from getting to pre-op and having him wheeled to the OR.  A nurse comes in to check his vitals, then the anesthesia nurse comes in to discuss giving him medicine to relax him.  Follows is the surgeon's physician assistant, the actual surgeon, the child life expert, the anesthesiologist, the oncologist, and the oncologist's physician assistant.  There is no possible chance of not understanding what they are about to do!  The surgery itself took about an hour and then he was in recovery for an hour before he was moved to his room in the Aflac Cancer Center.

He was/is in a bit of pain but was completely  happy watching Toy Story and then playing with puzzles on an ipad.  We agreed for Jake to be in a study where his treatment protocol would be randomly determined.  He would either get the normal chemo treatment consisting of 5 drugs, or he would receive the same 5 plus another drug called topetecan.  Jake was randomly chosen to receive the normal 5 drug treatment which means that our first stay in the hospital is only two days. 

At 6pm he began chemotherapy. The nurse came in wearing a hazmat type gown, mask, and gloves to administer the drugs into his IV.  I had no idea what to expect as far as chemo goes, but it is apparently some really potent stuff that they're using!  He received 3 drugs today via an IV drip into the new port,  The first drug took 5 minutes, the second took 15 minutes, and the last took an hour.  Both before and after the infusions he has have a saline drip to keep him very hydrated because one of the drugs will irritate the bladder if it sits in it for long.  Because of this, Jake is basically a peeing machine.  (Too much information?  LOL)  Speaking of pee, we now have to take special care of his during chemo and 48 hours after.  They have been studying the effects of chemo drugs and have found that as the drugs are flushed from the system they vaporize from his pee and can be inhaled if you are nearby.  So, we have to wear gloves and a mask to take him to the bathroom and then cover the seat with a plastic pad to be sure the toilet doesn't release the chemicals as it flushes.  You learn something new everyday.  You're welcome.  :-)

I would say that our "Day One" was not too bad, and I pray that as we endure this first roller coaster of treatment and that it continues to be alright.  We won't know for sure how his body will respond or how long it will take him to recover his blood counts until close to the next treatment.  We have been told to expect him to begin losing hair in about a week but that the symptoms of nausea and vomiting should be under control from some medications that we've already been given.

We know that today's success is largely attributed to all of the prayers that are being sent up for Jake and for us.  We can't thank you all enough for taking the time to think of us and pray for us while we endured our "Day One." We did it and are in good spirits.  On that note, I'm going to sleep.

The Day before Day One

As far as chemotherapy goes, the first day is called Day One.  Tomorrow is our "Day One," but, today we had to go in for the last tests.  Jake had blood drawn to record beginning cell counts, an echocardiogram, and an EKG.  I am so proud of this little boy, he is so mature and brave.  He does whatever the doctors ask him to do and rarely complains.  Unless, of course, you want to pull a band-aid off. 

If you have never been to Children's Healthcare of Atlanta you are lucky!  But, if you have been, you know that the staff, treatment, and service is unparallelled.  They are wonderful people.  We have been there half a dozen times now and we haven't met a single person there that wasn't a joy to be around.  I can't say enough about this hospital and we are so so fortunate to live close enough to be able to take Jake there, even though it's a 40 mile commute each way.  As my Dad pointed out, at least it's not a plane ride away!

As we were leaving the hospital today there was a musician playing for a big group of kids, all of whom are sick.  Attached to IVs, hairless, in wheel chairs, you name it.  I realized that my baby is going to be one of those kids in a matter of hours and I had to walk away so that Jake couldn't see my tears.  With our Day One on the horizon I am being forced to accept this reality, and folks it ain't easy.  Then again, no one said this was going to be easy.  My brother, Dan, sent an email with perfect timing.  In it he said "You are a strong woman and I know you and Randy will be strong for Jake."  Thanks for the reminder, Dan, and you're right!  Jake needs us and we will get through this.  There is no other choice.

Wow...

Randy has some amazing friends!  They made this for us and have it up at one of the local bowling centers.  Thank you so much guys!

Meeting with Dr. Katz

Jake has a favorite stuffed animal named "Mr. Kitty" who he received from his Nana on his 1st birthday.  Jake has a habit of running Mr. Kitty's tags in between his fingers and it is so cute!  Jake's oncologist is Dr. Katzenstein (Katz for short) and we think it's no coincidence that Jake's stuffed buddy and the doctor who's going to get rid of this disease have similar names.  Hey, we'll take any indication of hope that we can get!  

We received a call from Dr. Katz on Monday.  He told us that the cancer is localized, meaning it has not spread!!!

Thank God for answered prayers!  We have been overwhelmed and rendered speechless by the amount of prayers and support given to us by, not only family and friends, but also complete strangers.  It has been a very humbling experience thus far. 
We met with Dr. Katz today , as well as the social worker, child life specialist, nurse practitioner, and nursing team.  All of these people will be working with us to make Jake’s treatment go as smoothly as possible.  It is a complete understatement to say that these people at Children’s Healthcare of Atlanta – Egleston are amazing.  They are on the ball and we couldn’t be happier to place our baby in their hands.  As a matter of fact, every doctor that Jake has seen has been nothing but fantastic.  He has a wonderful, caring, and attentive pediatrician, Dr. Angela Hutchins-Howard.  All of our kids have been treated by her since birth and we couldn’t fathom changing physicians.  We firmly believe that things happen for a reason and the chain of events and people involved leading up to today were put in place for the purpose of catching the cancer early.  We did, however, get a big wake-up call when the oncologist said that the survival rate for this type of cancer is 65% to 70%.  I guess I’ve been in some kind of denial about the severity and seriousness of Ewing’s, so today was a little depressing for me.  I’m sure it won’t be the last depressing day and I will have to work hard to be strong for Jake.  We have to beat this, there is just no other choice.

CT Scan

We received a call on Thursday the 8th to tell us that Jake's CT and PET scan were moved up to the next day, Friday the 9th.  We went in at 7am and Jake got an IV, drank the contrast, received the radioactive isotope, and then waited for his turn.  He actually fell asleep in Randy's arms while waiting.  This was Randy's first time seeing Jake sedated and he hard a hard time handling it.  It's one thing to see your child in pain and quite another to see your husband succumb to his emotions.  So far we have been taking turns being strong and freaking out.  Hopefully we can continue to hold each other up this way as we start the long road ahead. 

Now What?

We went home the afternoon of the biopsy and treated Jake with lots of snuggles, cartoons, and chocolate milk.  The pain medicine makes him nauseous so we let him eat whatever he was willing to eat.  That night was the hardest yet, but as a couple days passed he was much better.  He feels pretty good during the day but still complains of leg pain at night (which is one of the symptoms of Ewing's).   Jake went back to preschool today and he had a great time.  His teacher, Mrs. Lisa Sizemore was amazingly supportive and caring and she took special care to make sure he was comfortable.  Jake is a "Kiddie Cane" at Monroe Area High School.  It's a program for high school students who want to work with children.  Mrs. Sizemore and Mrs. Smith do an incredible job with the high schoolers, who in turn give great attention to the preschoolers.  We couldn't be happier that we choose for him to attend their program!

Biopsy Results

11-5:  I am so awesome that I set the alarm for p.m. and overslept.  We were 30 minutes late to check in but they didn't say a word to us about it.  Things went smoothly as we were seen by the anesthesiologist, a fellow on the surgeon's team, and several nurses.  We were told that because they were removing a small piece of his shin bone it would weaken the bone, so they would be putting a cast on his leg for a few weeks to make sure he didn't break it.  This procedure required him to be under general anesthesia.  They gave him an anti-anxiety medicine (which made his loopy) and then wheeled him back to the operating room.  It's hard to remember, but after a while the surgeon came in to tell us the bad news.  They had sent the sample to pathology and it already came back as cancer.  I have little memory of the rest of the conversation, and held it together barely long enough for him to leave the room.  Our nightmare was confirmed, our baby has cancer. 

Leading up to Diagnosis Day

On October 11th, Jake was playing outside with another boy in the neighborhood.  That boy rode his bike directly into Jake, knocking him over in the street.  He scraped up his face and elbow, luckily not knocking out a tooth in the process.

Saturday, October 13th, he hit his shin on a chair and screamed in agonizing pain.  Much more than you would normally cry over a little bump.  After talking to Dan about, we agreed that it could possibly be a hairline fracture from the bike accident and that it should be x-rayed.

Monday, October 15th, I took him to the pediatrician on Monday morning and she also thought it looked like a hairline fracture.  She ordered an x-ray to be done STAT.  Meanwhile, Ethan's school called saying that he didn't feel well and I needed to come get him.  I swung by the school to get Ethan and then went on to the hospital.  The results were given to the pediatrician within an hour.  She was concerned that he may have an infection and wanted us to bring him to the emergency room at Egleston Children's Hospital right away.   I packed the kids up and headed to Atlanta.  It was the busiest night that the ER had seen in a long time (unfortunately) and we waited 4 hours to see a Doctor, had blood work, and then saw an orthopedic doctor.  I took the Ethan and Aubrey home while Randy stayed with Jake until very early in the morning when they were released.  Basically, the doctors had no idea what the mass on his leg was.  They referred us to a specialist with a very scary title: orthopedic oncologist with a specialty in rare tumors.

Tuesday, October 16th, we received a call from Jake's pediatrician saying that the radiologist read the x-ray that morning and believes that Jake has Ewing Sarcoma.

Wednesday, October 17th, he had his appointment with Dr. Oskouei  (the specialist) who said that he doesn't know what the mass is and therefore needs Jake to have an MRI to find out what kind of tissue it is.  The MRI was scheduled for October 31st.

Wednesday, October 31st, we went for the MRI at Egleston and Jake was such a trooper.  The nurses all said he is a very mature 3 year old.  The only time he cried was when they wanted to remove a band-aid.  He was too busy playing with an Ipad to notice them putting in an IV.  He was sedated and the test took about an hour. 

Friday, November 2nd, I received a call from Dr Oskouei's assistant saying that the results were back from the MRI and that they think it is Ewing's Sarcoma.  She asked us to come in right away to see the doctor and discuss what to do next.  I went straight to the office and Jake was seen very quickly.  Dr. Oskouei said that he still doesn't know what the tumor is and that we need to do a biopsy next.  He strongly believes that this is osteomyelitis (bone infection) rather than the cancer because of Jake's age and because the tumor is very painful.  The biopsy is scheduled for 7:30am arrival time at Egleston on Monday, November 5th.  We will receive a preliminary diagnosis the same day, but will have to wait 3-5 days for a firm diagnosis.    So far this has been a roller coaster.  It's cancer, it's not cancer...it's cancer, it's not cancer...Ahhhhhhhhh!!!  We have decided to try not worry and just wait until we have a confirmed diagnosis.  This back and forth is really stressful and exhausting!  In the meantime we are praying.