Under the weather

Kait: Jake wasn't feeling well on Friday so he wasn't able to come to The Color Run with us on Saturday. He has had some pain in his bottom but didn't have a fever until today. He woke up with a fever of 101.8 which is very dangerous for him. He is considered "high risk" so they put him in a room at the emergency room right away. Kind of like an ER VIP. They did a chest X-ray because he has a little cough and swabbed him for strep. Both the test and the X-ray came back normal so we aren't sure why he had the fever this morning. They have given him two antibiotics, one of which targets the intestinal tract so that if he has a tear in there he will be covered. He is being cross matched right now to receive a transfusion. His white blood count was .34 this morning, platelets were 6.7 and ANC was 320. All of those numbers are low. They aren't as low as times before when he has been admitted so they said we might get to go home on Wednesday. If his counts recover enough then he could possibly still get chemo on schedule this Thursday, but that is a wait and see how it goes type of thing. I wouldn't want to be in the hospital for a week straight, but I also don't want to delay his treatment. So, like usual, we are at the mercy of this cancer...more specifically of the treatment. There are so many fundraisers and charities working hard to raise money and donate for research, it just gives me hope that there has to be better treatments on the horizon. I know not for Jake, but for the countless others who will be diagnosed after him. Hopefully in the future the treatment for Ewing's will be just an inconvenience instead of a life changer.

There are two things I want to mention, one of each coming from my Dad and from my Mom and both are related to faith. Two days before Jakes's limb salvage surgery we went out to eat at my favorite restaurant. We wanted to enjoy a relaxing dinner together before our worlds would change once again. Sometimes I can't think of anything to say. My brain is tired and I often just sit and stare into space. Apparently I was doing just that and must have had a certain look on my face. Dad got up (visibly upset) and went to get some fresh air. He went out front where a man stopped him. The conversation went as follows:

The man: "sir, is everything alright?"
Dad: "no, it's not".
The man: "what can we do to make it better?"
Dad: "nothing. Actually, you can pray for my grandson."
The man: "then I'll do that"

Dad began to walk away and turned to look back at the man but he was gone. Nowhere in site. Only now Randy was walking toward him. The story gives us chills. How often does a total stranger stop another person to offer comfort? And the fact that he just disappeared? A guardian angel, perhaps?

I mentioned in a previous post that I keep reading the stories of other children who have lost their lives. I was following one particular story about a baby named Heaven. She was diagnosed with PNET when she was about 8 months old and fought it hard. At 12 months she was struggling and put in hospice care. The family went for days, maybe weeks expecting her to die at any moment but she kept fighting on. Finally at 13 months old she passed away. She was barely older than Aubrey. I was telling my Mom about Heaven and asked her why God would put her family through the heart wrenching days leading up to her death? Why would God let her suffer that way, let alone her family? Why prolong the pain and misery? Mom said "it was explained to me best that life is like a tapestry. But we are living on the other side of the tapestry- it isn't beautiful, there are strings in knots and out of place. We can't see or understand the masterpiece on the other side." Maybe these hard things happen so we can learn something. Maybe so that we will come closer to and trust in God. Maybe we aren't meant to know the why. Every time I read about a child who is losing their battle I think of the tapestry. I hold onto that idea because I can't handle the thought that all of these beautiful lives lost are for nothing.

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!

 

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 ♥

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. 

Hope

Kait: After a very long wait for Jake's PET scan on 2/4, he was discharged from the hospital, so Randy brought him home. We immediately piled into the car to go to Wendy's where the fundraiser was being held for us. We drove up and saw the sign with Jake's name on it and and we were excited for him to be feeling well so he could enjoy the night. We had a great time and had some delicious food!

Jake's oncologist reviewed his PET scan with Randy and he was very pleased with the results. The tumor is no longer lighting up on the scan like it was before. This means the chemotherapy is working. It's one thing to hear it but it's another to see the proof! We are very excited from this news and hope to continue on the path to recovery.

Jake went to school the next day but didn't feel up to going on Wednesday. He started feeling a little sluggish but not too bad. Friday afternoon he started running a little bit of a temperature but not enough to warrant a call to the hospital. He slept terribly that night and I was worried so I took him to the ER at Egelston to be checked out. They did an X-ray of his belly because he was complaining of pain and they found that he had a large amount of poop built up causing his intestines to distend. He was admitted and they started him on lactulose and an antibiotic (just in case). It was discovered that he also had a urinary tract infection. He spiked a fever that night and whenever that happens he has to stay in the hospital for a few more days. Plus his red blood counts went down overnight so he is getting a transfusion today. Ugh. I really didn't want to be here! So now it's Sunday and nothing has changed, except that he hasn't had a fever again. He can't be discharged until he is fever free for 24 hours, his white blood counts go up at a significant rate, and his blood cultures remain negative for bacteria for 72 hours. The white blood counts can jump miraculously overnight but the other two things we have to wait and see.

Randy took Ethan and Aubrey to the circus today and we found out that they will exchange the remaining two tickets for a different show date! Depending on how things go we may go to the circus next weekend instead. We also have a lot of things planned to do once jake is feeling better. The kids are going to choose whatever fun activities they want and we are going to spend a lot of time together before Jake's surgery on the 26th. My emotions have been going up and down lately even though we got the news of his chemo working. Don't get me wrong, it is good news, but I just want to be done with this. I want it to be gone and I want to close the door on this chapter. Unfortunately, this chapter will never be completely finished because once you have cancer you don't ever forget. There will always be follow up scans to worry about and long term effects of treatment that we won't know until he gets older.

This is really a pessimistic thing, but I saw it on Facebook today and I wanted to quote it because I have been all too guilty of it. If you have been guilty too, don't feel bad, just get even. Help us make a difference!

"What, children with cancer? I'd rather just turn my head the other way and pretend that doesn't really happen, said way too many people."

Up and Downs

Kait:  After my last post, Jake continued to be in pain from the mucositis so I called his nurse to see if we could take him to a hospital closer to home and get his blood counts checked.  I took him first thing on Wednesday morning and the results were what we suspected- very low.  So low that he actually needed to get a transfusion rather than get chemo the next day.  I must have called his nurse, Nan, 6 times throughout the day trying to figure out if I should take him that day instead of waiting until Thursday, but, in the end decided to wait it out.  Once again our plans were being changed and we had to roll with it because there is no other choice.  I was disappointed that he wouldn't be able to stay on track for his chemo and worried that he wouldn't be able to go to the Big Apple Circus on the 10th.  We had bought tickets and were hoping to surprise the kids.  I keep telling myself to go with the flow, but as I had told Randy, I wasn't feeling very good, kind of down.  I was tired of Jake not feeling good.  I had spent every minute trying to do what the doctors and nurses told me to do to prevent mucositis, which is to keep him hydrated and try to get him to eat.  The more he eats the faster his counts recover, and the more hydrated he is the better his G.I. tract will feel.  As I type it out it doesn't seem like it would be that emotionally exhausting, but it really is.  It is just awful to have your child be in pain and you are helpless to fix it. 

Even though his counts were low, I thought he might be recovering because he said he was hungry and was asking for food.  Arby's roast beef, specifically.  Our nearest Arby's is about 15 minutes away but I am always willing to get him what he wants.  Especially when he hasn't been eating much.  I got the sandwich and was on the way to Sonic for a slush drink when he started screaming about it hurting to eat it.  Before I could pull over he had balled up the sandwich and shaken it back and forth before throwing it on the floor.  We have an old minivan with bench seats and I can promise you that there are pieces of bread and beef in every square inch of it now.  Although I am not a fan of cleaning up food crumbs all over the car, I am glad that this incident happened.  I finally realized that Jake was not just in pain, but he was angry.  He was hungry and wanted to eat that sandwich and he couldn't.  He was mad.  Once I asked him if he was mad he calmed down.  His emotion was understood and validated and I think it made him feel a little better.  After that we worked together- me breaking off little pieces of food and him placing them on his tongue.  This allowed him to avoid having to bite into it and hurt his gums.  It makes me sad that he is having to spend this year of his life learning about himself and growing up while fighting cancer.  He has been transitioning from toddler to kid for a while now.  It just sucks that he learns how to vocalize anger from these experiences rather than something normal like having a toy taken from him at school. 

I took him the next morning, his scheduled chemo day, to get the blood his body needed to feel better quicker.  The low counts were making his heart work harder and made him feel tired and week.  The nurse took a blood sample to check his counts and went ahead and accessed his port.  He is getting so much better with that, it is amazing.  Now I don't have to hold him down at all.  He still cries and screams but he knows to hold still.  He has recently told us that he doesn't like to be held down when getting his daily shot and afterwards he tells us that he is very brave and that he did a great job.  His blood count results came back and we were shocked to see that they had gone from 900 to over 4000 overnight.  It is incredible what medicine, prayer, and the miracle of the human body can accomplish.  Instead of all of our schedules being turned upside down we were back on track for chemo and to be admitted that day.  He did still need a transfusion but that didn't effect the parts of his blood that are count specific for receiving chemo.  Jake has spent the past few days at the hospital getting his daily chemo and doing an excellent job eating and playing.  He had an echocardiogram which showed that his heart is doing great.  He is scheduled for a PET/CT scan tomorrow morning and we will pray for it to be clear once again.  Tomorrow night the Wendy's in Grayson is having a fundraiser for our family and we are excited to be able to be there to see friends and meet new ones. 

I wanted to end this post with a request for you to look through this website: https://www.1million4anna.org/  or at least watch this video about Anna:


I have been aware that funding for pediatric cancer research is very low since we found out that Jake has cancer.  Until reading through Anna's page I had never been angry about it.  Now I am.  I am angry that these beautiful children are suffering, fighting, and in a lot of cases, dying because the scientists are not receiving the funding that they need to find better treatments.  I don't know why, but Anna has touched me and made me understand that nothing will change if we don't step up and make it happen.  The Basso family has lost their daughter and are still helping the world and I am so inspired by them.  We have to do something about this. 

On the ride

Kait:  When we first met Jake's oncologist, Dr. Katzenstein, he warned us that searching google can be a bad idea.  So what do I do?  I search on google.  At first I was looking to find a kid Jake's age with Ewings sarcoma, dark blonde hair, brown eyes, wears size 9 shoe...(you get the picture) and I wanted to read that he tolerated treatment, had a successful surgery, and was declared cancer free.  Obviously there is not a kid in the world that meets this exact criteria.  I was never going to find the storybook tale because there are no two situations alike.  I can find a boy with a solid tumor in his tibia but he's 17.  Or a 3 year old with a tumor in her heel.  Or an adult who beat it as a child with flying colors.  It finally dawned on me that all of us who are parents of cancer fighting heroes are doing this without a manual, and while another child's fight may be similar, no two are the same.  That realization is not a comforting one to me.  So, now my google searches consist of finding blogs like ours, of people strapped to a roller coaster with no way to get off.  I guess in a way it makes me feel better to know that we're not the only ones who think we are not handling things too well.  Sometimes I find some great advice too.  One thing I read was from an oncology nurse and she said that in her 20+ years as a nurse, in most cases the parents and family got hammered...the kids did fine.  Every day is hell for a while but to a kid it's just a short time and they go on about their business.  So maybe Jake won't be emotionally scarred from this.  It's entirely possible that I will be the one who is scarred, and I'm hoping to use my scars to raise awareness, raise money, and volunteer.  There is no way that my life will ever be the same or that I will ever be able to forget everything that we're going through. 

What a small world we live in.  I was given a gift certificate to get my hair done (a donation coordinated by Jake's teacher) and I used it this past Friday.  After I told Alicia at Utopia Hair Salon all about Jake, she told me that her cousin's young son is fighting a brain tumor.  It is unbelievable that there are so many children fighting cancer and I never knew it!  These kids live in our cities, towns, and neighborhoods.  Did you ever think you would know a kid with cancer?  Now that my own son has it I see it all the time.  My eyes have been opened to a world that I didn't want to be a part of.  A world full of unimaginable heartache, love, stress, tenderness, pain, togetherness, confusion, and support.  See the roller coaster?  With every negative there seems to be a positive right behind it.  I love reading all of the comments posted on here and on Facebook.  It makes me feel so good that we have all of this support, and I am proud to be the Mom of a boy who has touched so many hearts.  The other day Jake said "You know what, Mommy?  I am very brave."  Yes, yes you are sweet pea.

Jake had been doing very well since his last treatment until two days ago.  He started showing signs of mucositis again and has been in mild to severe pain because of it.  He has not had a fever which means as long as we can manage his pain we don't have to take him to the hospital.  Lortab and fluids are about the only things we can do to help him which makes it really hard.  Mucositis is described as having a sunburn inside your mouth and throat and, in Jake's case, can affect the entire gastrointestinal tract.  If he's just sitting watching cartoons he is fine.  If he touches a sore with his tongue, swallows, or passes gas he is in agonizing pain.  Think of your worst sunburn and imagine someone slapping you on it a few times and you can get the idea of how it feels for him.  He is still drinking a little so I'm hoping he is on the uphill slope.

We have an update about Jake's surgery.  It was supposed to be on 2/12/13 but Dr. Katzenstein was worried that his body won't have enough time to recover from his next chemo treatment.  So we have postponed the surgery to 2/26/13 instead.  This will give him a well deserved break from chemo and pokes and give his body enough time to be healthy for surgery.   That way he will have the best chance at recovering from surgery quickly so that chemo can resume.  As of right now his 6th round of chemo is scheduled for 1/31 (this Thursday) and he will be admitted for 5 days.  Thanks for praying for us and for loving our brave boy!