Countdown

Kait: Jake's doing great. The past treatment reminds me of his first treatment. Very little side effects, still playing and eating. Don't get me wrong, I've been loving having my sweetie pie laugh and be himself, but I always have the worry in the back of my mind. My mom came today which means that we will be in the hospital for 5 days straight. I dread telling him that we have to go...hearing him scream "no" as I put his EMLA (numbing) cream on his port. He will cry at least part of the way there and then scream again before the finger prick. He will need to be held down, like in the beginning, when they access his port. He has regressed a little in his bravery since the break from chemo. Including this treatment he has 10 left, so I assume he'll get used to it again. I wish he didn't have to get used to it! I don't know why, but I am more emotional now than I have ever been along this journey. I noticed today that his hair is getting even thinner and his eyebrows are almost gone. Soon people will know right off the bat that he has cancer and I won't get the chance to bypass the questions of passerby's once in a while. I contradict myself quite a bit on this subject and I assume it depends on my mood.  Sometimes I sort of wish that I could just grocery shop in peace, without the stares.  Other times I welcome the chance to talk about it.  People ask "Did he break his leg?" I say "No, he had a bone tumor that had to be removed." I am not afraid to tell people about his diagnosis, but when it is with someone I've never met it turns into a long conversation about how we found it, what the surgery was like, and believe it or not, is he going to be okay? What are things not to ask the mom of a cancer patient for $1000, Alex? I know that people care and are curious, but it would be nice not to ask a mom if their son is going to live. The reality is that I know I have to be open and welcome questions so that people (like us) can see that cancer happens to kids and normal families that live in their town. 

I know that Jake has a really decent shot at beating this. So what is my problem? Well, one of my problems is that I read things on Facebook too much. There are a few pages that I have "liked" that pop up on my feed and they are doing an amazing job of raising awareness. So today one of them is about a teenage boy diagnosed with the same thing as Jake. I think, "Oh, good this will be nice to read." I get to the end of the paragraph and the story concludes with funeral arrangements, or he got his wings, or he lost his fight. These stories are posted daily...and it hurts. I don't even know these people but it hurts to read it. That's why I always have it in the back of my mind that our son could succumb to the same evil. I pray and I hope and I wish constantly that this will not be the case. I remain positive and it's so hard to describe to someone who hasn't had a relative with cancer. But, believe me, it is just so depressing, all the time.  From what I have found from other parent's experiences is that the fear and anxiety is always there, but once you get to the 5 year mark you can start to breath a little easier.

I had a break down last week because I felt inadequate compared to my husband. Trust me, he assures me otherwise. He has yet to blog about it, but he did an amazing job raising money and awareness for both a St. Baldrick's event and The Rally Foundation, and ran his first half marathon besides. Proud doesn't begin to describe how we all feel. I feel like a terrible person putting this out in the open, but I felt like I'm not doing enough and I let my insecurities overshadow the good Randy is doing. (Sorry Randy) This isn't about me, but as a Mom you want to fix everything for your children and I can't fix this for him. All I can do is walk to path with him and help the best I can.  Sometimes that translates to me feeling helpless.  I have found that all of my emotions are heightened, including the ones I'm told are ridiculous. I guess it was time for my biweekly emotional breakdown. ;)

Logistics and treatment-wise, this is what we have coming up: Jake will have two 5-day treatments in a row (admit on 3/28 and 4/11) and then two 2-day treatments in a row (admit on 4/25 and 5/9) provided there are no setbacks. He will then resume alternating between 5 and 2 day treatments until he has completed all 17. Let the countdown begin!

Here is Randy's speech from the Rally Foundation's pasta dinner:

 

 

Post-op

Kait:  I forgot to write after Jake's post-op appointment with his surgeon!  The surgeon's assistant removed the very thick bandage from Jake's leg and we were pleasantly surprised by how it looked.  I was expecting a gruesome sight, but it actually looks pretty clean.

Jake sat up and we watched his little brain process what he was seeing.  His face changed from surprise to confusion.  He asked "why is there a crack in my leg?"  The worst part of the appointment was removing the stitches.  Jake was almost hyperventilating because he was crying so hard and had red splotches all over his face.  Randy had to hold him down so that he wouldn't kick.  Jake chose green (of course) for his cast color and we had to move him to a sitting position with his legs dangling to get the cast set properly.  This was also uncomfortable for him. 

Once the cast was dry we waited for the surgeon to come talk to us.  We had questions because we needed some clarification about Jake's overall outcome.  If you remember in the beginning, Dr. Oskouei told us that Jake would be able to do anything he wanted to do after his bone healed.  Well, this might not be the case any longer.  Dr. Oskouei admitted that he lost sleep over Jake's case worrying about getting the cadaver bone to fit without ruining his growth plates.  He was able to complete the surgery successfully, but Jake's left leg will never be as strong as his right.  And, we don't actually know what Jake will be able to do with his left leg until we get further into his recovery.  Once we can see how well his bone grows into the cadaver bone we'll get a better idea.  Our next appointment for x-rays will be on 5/8/13.  Please pray that Jake's leg heals properly. 

Dear Jake

Kait:
Dear Jake,
  You are amazing.  You are awe-inspiring and wonderful and adorable and bewildering all at the same time.  It has been 23 weeks and 2 days since your first x-ray, and since you have had 6 rounds of inpatient chemotherapy, 3 ER admits for chemo related illness, 3 surgeries (biopsy, port placement/bone marrow aspiration/radical resection of the tibia), 2 EKGs, 2 echocardiograms, 2 more x-rays, 3 blood transfusions, an MRI, and 2 CT/PET scans.  You have been sedated 3 times and put under general anesthesia 3 times.  Your port has been accessed 13 times.  At the beginning I thought that having an MRI was a big deal and, thanks to cancer, an MRI is now a walk in the park.  We keep wondering why you were chosen to have cancer.  I say it's because your wonderfulness is going to change the world.  You are so easy going and accepting.  You went to sleep one day and woke up with a huge bandage on your leg, yet you didn't question it.  You trusted us when we said the doctors fixed your boo-boo and then you asked to watch cartoons.  Jake, you are so smart, sweet, lovable, and hilarious.  Your laugh makes me burst with a laughter of my own.  While you are perfect in my eyes, remember that no one is perfect by the definition of the word.  Perfection is boring and you, my sweet pea, are always full of surprises.  You can be quick to anger and can throw magical tantrums.  I have to keep reminding myself that you are still only 3 because you are so mature and strong.  You are someone to be looked up to and you have taught me so much. 

"I'll love you forever, I'll like you for always.  As long as I'm living, my baby you'll be." Robert Munsch

Mommy

Prelude to the letter above:
I wrote a letter to each of my boys before Aubrey was born last year and I plan to write one to them every year around their birthdays.  Every word means even more to me now, and I want nothing more than to write these letters for years and years to come.  Here is what I wrote to Jake last year:

Dear Jake (age 2 1/2),
  You are my sweetie pie in every way!  I love getting to see your personality grow as you have become a little person.  You have a voice and something to say and you deserve to be heard.  I am amazed at how smart you are, independent, courageous, hilarious, and sweet.  You are going to grow up to be an incredible person and I am so proud to be your Mommy.  I love you so much and I love spending time with you.  You must always remember that I love you no matter what and always will.  You are my littlest boy no matter how big you grow.  I know your childhood will pass by in the blink of an eye for me, but I hope you (and I) will enjoy every minute that we spend together.  It's hard to say that I can't wait to see who you become because the truth is that I want you to be my little boy for as long as possible.  I love you so much.

Mommy

Fun fact: Jake weighed 12lbs, 7 ounces and was 22.5 inches when he was born!

 

Open up your heart

Randy:
I come home smiling because Jake's appointment went well, and then I get on Facebook...one of the first things I get on here and read is of another child that has been treated in the same rooms as Jake at Egleston being told the unthinkable... "There is nothing more we can do" Silas is 4 years old...

This happens to real people...every single day....WE CAN HELP STOP THIS!!! Please do what you can to contribute....between 2 bowling balls and 4 leagues we have raised $3,500 for research....all together we as a team have raised $6,100 since November. I can't thank everyone enough for all of the support so far....

We're not done though... I type this with tears running down my cheeks for Silas' parents, and his family. He is Jake's age....and they have given him no more than 6 months. Imagine that for one second...just try to....imagine hearing those words. I can....it makes my heart literally hurt...it makes my throat swell....it makes my eyes burn. There are young children being taken...7 per day...every day. Today 46 families will be told the 4 words that destroyed our world, "Your baby has cancer". Let's stop giving cancer the last word. Let's work together and stop this from happening. Give $1...$5...something. No amount is too small. Give your time...your hair...your heart.

This Saturday I am dying my hair yellow and having it cut into a mohawk. Am I doing this for attention...you bet. I want people to ask me why I look like an idiot....I want to tell them about Silas....Jessie Rees....Anna Basso...Ashley Davis...Aiden...Matt Hobby...and the 2,800 children that will lose their fight this year.

"If it's miles we have to go, then it's miles we have to give" - Landon L Cooper

http://www.stbaldricks.org/participants/mypage/580686/2013

Recovery with a side of...

Kait:  As Randy mentioned in the last post, Jake has done amazingly well since surgery.  Honestly, it is unbelievable that he is doing so well.  I know I shouldn't be that surprised since he is an amazing little boy.  Today marks once week from surgery and he only complains when it's almost time for pain medicine (lortab) or if we jostle him a little too much when carrying him.  The hardest thing so far is going to the bathroom, so I think we're doing pretty well.

He has his post-op appointment with one of his surgeons on 3/13 and as long as he clears Jake to resume chemo then we'll be back at Egelston for a two day treatment on 3/14.  We have to keep going and keep beating this cancer down.  I know that, but I really don't want to go.  Ethan doesn't want Jake to go either.  He said "If the tumor is gone why does he have to keep going to the hospital?"  It's a perfectly reasonable question and the answer is "because he has to."  We have to finish the course of treatment if we have any hope of beating this.  So now he has to keep getting chemo and the side effects and he can't walk.   In case we haven't mentioned before, his surgeon said that he can't walk on that leg for 9 months.  No need to go back, you read that right.  Essentially he should be done with chemo before he can walk.  The hard part will be convincing him and keeping him from walking when his leg doesn't hurt any more.  I feel bad for complaining because I know that some kids who have had cancer never walk again.  I am more than thankful that he will.

 I definitely think that Jake is handling all of this way better than the rest of us.  He went to sleep on 2/26 and woke up not being able to walk and in a ton a pain.  Yet, he accepts this and doesn't even question it.  I, however, feel like a wreck.  I bottled up my emotions on the day of surgery so that Jake wouldn't ask me what was wrong.  Then I kept them securely tucked away while I cared for him in the hospital.  Finally, a few days later I began to feel run down, depressed, and emotional.  I should have just let it all out that day. 

This next little bit may not be for those of you with weak stomachs, or who are eating right now.  Let this be a warning ;)  Jake- I apologize as this will embarrass you some day.

August 2011:  We had just gotten on the road to head home from Orlando after a wonderful vacation when it started to rain one of those rains that requires the wipers on full blast and looks like its coming from the ground as much as from the sky.  Jake says, "I need to go poopy."  Randy and I look at each other, out the windshield, and back again.  There are no gas stations in site and only fields on either side of us (more like swamps now).  Jake was not even 2 and a half yet so we still put him in pull-ups for long car rides in case he fell asleep.  Basically, Randy and I ignored his request to go to the bathroom since there was nowhere to stop.  A pungent aroma filled the car and we knew the deed was done.  Hurry up nearest gas station...we need to stop.  I volunteered to change the pull-up so I grabbed Jake and scurried into the gas station, which turned out to be a lovely truck stop complete with a Dunkin Donuts.  Into the women's room we went.  No sooner did we get in did I notice a wetness on my stomach and a glance in the mirror confirmed that this would be no ordinary clean up.  Let me mention here that I didn't bring the wipes in.  Stupid!  Ok, no problem.  I grabbed some paper towels and stood him up in the sink, pulled his shorts down which smeared the mess all the way to his socks.  I pulled up his shirt and found more smear up to his arm pits.  Shirt, shorts, and socks- in the trash.  This awesome terrible restroom had the tiniest sinks known to man and poor Jake was standing in it while I tried to splash water up to clean away the mess.  To make matters worse, a cleaning woman comes in and proceeds to stand about 10 feet away watching me.  Just watching.  Take a picture, lady!  Finally she offers me a rag and then resumes rubbernecking.    I guess she just couldn't turn away and needed to see how this one played out.  Forgot to mention that Jake is crying the whole time.  After about 20 minutes I come out of the bathroom with Jake in nothing but a clean pull-up.  Randy had come in with Ethan and says, "do you want a donut?"  No, I don't want a freaking donut!  I want a clean shirt.  In the pouring rain I change my shirt at the trunk of the car and then dispose of my poop shirt.  We all pile in.  Randy: "I heard screaming, what happened?"  Me: "Bad things." 

The funny thing is that we should have known something like that would happen.  Jake has always been "the man" when it comes to pooping, in fact one of his nicknames was "Pooperton."  That dude was a flatulence machine as well.  This brings us to the reason I am recalling this story.  After Jake had mucusitis the first time, he had bad sores that caused severe pain when he needed to poop.  The memory of this has been seared into his brain and continues to cause him trouble.  Although it doesn't hurt anymore, he still thinks it's going to and because of this he holds it for days and days and days.  He held it so long that he could no longer sit upright and we had to take him to the hospital back at the beginning of February.  He is on Miralax daily to keep things moving.  Now picture the story I told before and add a little over a year to it (present day).  Dejavu, except that I have to cut his pants off so that I don't smear it all over the dressing on his leg.  Anyone sell break away pants for a three year old?  Sorry Jake, I just had to get this in writing even though I know you will kill me for it. 

We had our first outing this morning with the wheelchair to visit Jake's school.  I wanted to try it while my Mom is still here so I could leave Aubrey at home.  Everything was going fine until we got down the road and had to come back home for a cut-off-the-pants clean up.  Add 30 minutes and we were back on the road- take 2.  At his classroom he was surrounded by all of his friends and he was very happy to have the attention.  We stayed long enough to do an activity and then came home for lunch.  I would say it was a successful trip, all in all.  This Saturday we have an appointment with the Make-a-wish foundation where Jake will start the process and tell them what his wish is.  His wish is to ride Mickey's train at Disney World.  What a fun trip that would be! 

Thanks to everyone around the world who is following Jake's fight. 

We can feel the love ♥

The Big Day

Randy:  As scheduled Jake had his surgery on Tuesday the 26th.  To say Kait and I were carrying a little bit of anxiety leading into it would have been an understatement.  Our little boy was going to have major surgery, where his lower left leg would basically be taken apart and put back together.  He wouldn't be able to walk for months, not even consciously thinking about the fact that his chemo would start right back up in 2 weeks.  Either way this is the biggest hurdle in our journey and a necessary step to get to the end.

We arrived at the hospital at 11:30 for our noon appointment and were pretty quickly checked in.  They told us he was scheduled to have his surgery at 2pm and that everything was on time.  His surgeon (Dr. Oskouei) came in and explained the procedure and that his part (removing the cancerous bone) would be quick and only take 30 minutes or so, Dr. Fletcher (Pediatric Orthopedic surgeon) would be responsible for putting the cadaver bone in and fastening it with the plate and screws.  This would take upwards of 2 hours so we expected this whole thing to be over with by 5pm.  We did ask about the cadaver bone, and it was from a female adult in the midwest.  The surgeon said it was actually a pretty close fit size wise.  One funny note from this was the name of the procedure they performed was an allograft, however the nurses and doctors kept calling it a "limb salvage procedure".  We all kind of agreed that we didn't like that name and "allograft" sounded much less intimidating.

Around 2pm Jake was given Versed, which is a heavy anti-anxiety medicine that makes him loopy and forget everything that happens.  They give him this before taking him back so he doesn't freak out, as they don't fully sedate him until he is in the operating room.  Around 2:30 they rolled him back and we started the waiting process....

and we waited....

and waited....

and waited....

It would have been much less comforting if the operating room nurse didn't call and give us a couple of updates, because we didn't speak to Dr. Oskouei until almost 4:30.  He told us everything went great and that he started Dr. Fletcher's portion before leaving.  We were thinking another hour or so and he would be done....

but we waited some more....

Dr. Fletcher came out to talk to us just after 6:30 and informed us everything had gone well.  He told us what to expect when we saw him and eventually took him home.  He won't be able to walk for months (as many as 9), and any weight placed on it in the first few months could jeopardize the entire procedure as the plate the holds the bone together is VERY thin.  We were told to expect to be able to see him in around 30 minutes, and so we waited some more (that was the them that day).  After an hour or so the recovery room nurse called to say that he was stable but had a slight fever and some issues with pain.  They were going to keep him a little longer but we could go up to his room and wait.

and we waited some more....

and waited....

Finally around 10pm they rolled our little man in and he immediately informed us of the nurses spoiling him with apple juice drink after apple juice drink :)  He was in great spirits considering the level of discomfort he was in.  The first night was a bit rough as he didn't get any Lortab until around 3am, and so his only relief from pain came from a patient controlled morphine pump.  It was set to be able to be pushed every 7 minutes, which was great....except when we tried to sleep.  As the night and next day went along we were able to manage his pain and he started making great progress.  We were told he would be in the hospital for 4 days, so we expected to come home Friday or Saturday, however the doctors said he was recovering so well that they discharged him on Thursday.

We are still adjusting to our new lives at home.  The next few weeks will be very challenging until Jake can learn how to move himself around a bit.  He has a wheelchair and a walker, but will have to learn how to transfer himself from a chair to them.  First he has to get his pain down, which will take a little bit.  We're just glad this went as well as it did, and thank everyone for keeping us in your thoughts.

Hiatus

Kait:  I want to preface this post by saying that Jake has been doing really well.  We've had a lot of fun together during his hiatus from chemo, and Jake's personality has returned.  He has a loud cackle that makes everyone in the room laugh too.  His infectious smile is on display most of the time and his appetite has returned full force.  We took the family to the Big Apple circus, LEGOLAND, mini-golfing, the mall, horseback riding, golfing, the playground, Chuck E. Cheese's, and Toys R Us.  Basically, anything they wanted to do, we did.  Don't get me wrong, we had a ton of fun, but, there was no way to keep the sad thoughts from creeping in.  The elephant was always sitting in the corner telling us not to get too comfortable.  I would see him laughing and think "in a few days he is going to be in pain again."  I would see other healthy children playing and feel sad that Jake wasn't able to play to the fullest because he is tired, or just doesn't feel like himself.  This week gave us a small glimpse at how life will be after he completes chemo and we hate that he has to jump right back in just 16 days after surgery, after he has had a taste of life without constant pain, medicine, and doctors.
I am nervous about his surgery.  I am afraid to tell him what is going to happen because he knows enough now to not want to go to the hospital no matter what it's for.  I took both Ethan and Jake to his clinic appointment last Thursday and Ethan spent time talking with Layne (the child life specialist) while Jake got his blood counts checked.  Layne explained the surgery to Ethan and made him feel involved and special.  Jake's counts were perfect, confirming that his surgery will go as scheduled on 2/26/13. 
  I wanted to explain Jake's surgery in case anyone is wondering.  His surgeon said that he is an excellent candidate for an allograft which is the replacement of a bone with a cadaver bone.  Jake's tumor is very big- it is almost the size of his entire left tibia.  Thank God, it doesn't effect either growth plate.  The surgeon will make an incision from just below his knee down to above his ankle and remove the tumor.  The tumor is his tibia from below the top growth plate to about an inch above his bottom growth plate.  Like I said, it is big.  The surgeon has to remove a lot to be sure to get a good amount of healthy bone and tissue surrounding as well.  This is called removing with good margins and is important for removing tumors.  He will then place a tibia from a cadaver in the empty space and secure it with plates and screws.  He'll stitch him back up and be off to recovery.  We won't know if he'll be just bandaged or in a cast until he comes out of surgery because it will depend on how secure they are able to make the new bone.  The whole surgery should only take about two hours since he is so small.  He will be in a wheel chair for several weeks until he is cleared to start some weight bearing, but it will be nine months before the bone is heeled completely.  His tibia will continue to grow as normal because bones grow from the growth plates out. 
 
Something that I haven't spent much time thinking about is the cadaver.  It's been in the back of my mind ever since we were told he would be getting this surgery, but I haven't confronted my feelings on it before.  I know that it is possible for Jake to get a new bone because another child died and his or her parents consented for their child to be an organ donor.  A pair of broken hearts have generously given a priceless gift so that my baby will be able to walk and run and play for the rest of his life.  No one and I mean NO ONE wants to consider that they may be in the position to make that decision...ever.  But, I now know what our decision would be.  Sigh...every single piece of this journey is so hard and painful, stressful and depressing.  I am trying so hard to be strong and keep it together.  I try not to think too hard about things because all I need is a little crack and I'll fall to pieces.  I hate hearing my little boy cry and I know that is my future for the next step.  Yet, this step is absolutely necessary for his recovery.  I just want it done with so I can know what to expect and can take care of him without the mystery of how our life will be post-surgery. 

I talk about Ethan and Aubrey a little bit but a lot of people have been asking how they are doing so I thought I would share a little bit.  Ethan was nicknamed the "class encyclopedia" in his pre-K class and he still loves to share information.  He is so sweet, smart, and funny, and he has a heart of gold.  I call him my angel.  I'm not sure if it's because he's five or because his little brother has cancer, but Ethan has been acting out.  He has been very angry with me and he hates when I have to be in the hospital with Jake.  He calls me several times a day asking me to come home.  How do I explain to a five year old that Jake needs me just a tiny bit more?  I feel like a terrible mom for even saying that because I know Ethan needs me too.  When I am home I spend extra time with him and shower him with love and attention but he still has outbursts and I've found that he just needs a good cry now and then.  Don't we all. 

Thankfully, Aubrey is not old enough to know what's going on.  She doesn't cry when I leave but she is very happy to see me when I am home again.  My Mom (Grams) takes care of her when Jake is in the hospital during the 5 day stays so I don't have to worry about her or Ethan.   I have no idea what I would do without her and am so thankful that my Dad insists that she come even though it means that he is alone for a week at a time.  I say it a lot, but if we didn't have the support from our family and friends that we have this would be next to impossible.  

As I type this, Randy tells me that Ethan said he is sad that Jake has to go back to the hospital.  He doesn't want him to have to go anymore and he misses him.  I am mad that he has to go through this and honestly it's just not fair, and the phrase "no one said life would be fair," is bullshit.  Telling myself that doesn't make it hurt any less.  I wanted to be a Mom my whole life and I have the three beautiful children that I always dreamed of.  Cancer wasn't supposed to be a part of it.  I think positively 99% of the time but there is that 1% of my brain that lets a thought in that cracks my shell.  What if he doesn't beat this?  I know, I know, I know, that he has to beat this but I can't help but let that thought in once in a while.  If I never had those thoughts I would not be human. And, because I can't imagine life without Jake, it gives me the drive to fight the cancer even harder.

Hug your kids a little tighter tonight.