5 Months!

5 Months is here....
Where are we at and what are we doing?  My hope was to report to everyone by the 5 month blog that we had transplant booked.  Unfortunately we will not be telling you that.  We have recently found out that our donor was not cleared for transplant.  So what does that mean...We start all over again.  Yes we are disappointed, and hoped we would be getting ready for transplant...but I guess that's not how Mark's story was meant to go!
First off I should mention that I was told on numerous occasions, that our donors can make it far and then be told they can't donate.  The CHB team did tell me that...but I guess I thought it wouldn't happen to us.
I am feeling worn out and in a position to make another choice again.
 I also haven't been very honest with all of my readers.  There was a point when we were keeping things to ourselves...but I think if I am honest then everyone may understand my reasoning when all this is done.  From what our readers..family..ect.. know is that we have had one donor start the process...our most recent donor was our second.  I just didn't feel the need to share with everyone after the first time around...so here we are the second time.  This just goes to show how hard this process is.
We are so grateful for our donors and wished things went different...but it is what it is!  We are fully prepared for this journey to have bumps!  When it comes to Mark...things aren't always by the books.  I will be happy to update when decide where we will go from here...it just may take a little time.

On the upside...We had a recent visit from The Make-A-Wish foundation.  This was very exciting.  The wish team arrived in hand with presents for Mark...and paper work for Chris and I.  When Mark was asked what his wish would be, he made a great request!  He asked to go to Disney and be in the parade at the Magic Kingdom.  We requested his wish is fulfilled after transplant.  The wish team also asked him for a back up wish.  This is just in case they can't make his first wish happen...Guess what Mark asked for??  A trip to Hawaii!  We will find out in about a month if our wish is granted...This is just so exciting!  He deserves this wish.

Busy Weekend

Looks like we have another busy weekend.  We need to finish our move..and Mark will have baseball as well.  Mark loves baseball.  When he gets up on the plate to hit, he proudly waves to all his fans.  He also smiles and waves proudly as he runs the bases.  He is busy while waiting to hit.  Mark loves to be in charge.  He is the bat manager...he "sells" bats to all the kids going up to the plate.  Really he just hands the bats to the kids and organizes the equipment.  Mark likes to say he is selling them!

Sometimes he gets lazy!

Mark and Best Bud Brett

Hopefully Dialysis will be a breeze today and we can hurry home to kick off the weekend!  Mark is also recovering from his dental procedure nicely!  It's hard to believe but Monday will be 5 months.

I'm Back!

Not sure if anyone noticed...but the afternoon of Mark's birthday my blog website crashed!!  It was bit frustrating...I could not access my account until yesterday.  I tried both home computers Mark's ipad and my cellphone...and there was nothing!
Yesterday was a busy day for us.  Mark had his dental surgery so he could be cleared for transplant.  His OR visit was not booked until 3:15pm.  When I called for the time they said NPO after midnight!  No food after midnight I thought to my self.  They never run on time...how is this poor child going to survive??  That is 8 to 9 waking hours with no food...Mark loves to eat!  After feeling irritated about that and not wanting to wake up the morning of the procedure  (because I knew it would be like hell) I talked to Diann.  She called back down to dental to talk to the nurse...of course when she got off the phone she said no food 8 hours prior.  The dental nurse told me no food period...just in case I was going to feed him a big meal.  She could have just said no eating eight hours prior...anything before that should be a lite diet.  Sometimes I feel like the hospital is just a big world of miscommunication!!!  It can be so frustrating!  So Mark had his toast bright and early...Then off to school he went for a bit!
His dental visit went well...He was in the OR for a little over an hour or so.  They did cleaning, fluoride treatment, xrays and extractions!  The dentist said it all look good...no cavities no infections.  The reason for the extractions were because his adult teeth are trying to come in and baby teeth are in the way.  The dentist also mentioned that his dental age is about 7 years old...even though chronological age is 12!  The good thing is all went well and he should be officially cleared for transplant.  We will make it official on Monday after his post operative appointment!!!
Mark was not a happy camper when he woke up from his procedure.  He wanted Bertucci's ...Yah not so much with the extractions.  We did even make it out of the parking garage with out throwing up!  All he obsessed about was wanting...bread or grill cheese...all sorts of non-soft foods!  That made for a long ride home.  Finally when we got home I talked him into a pudding...Let's just say that stayed down for about 10 seconds.  After that he gave up and went to bad.  A long day for the little man but he was such a trooper!
I took a couple pictures of him yesterday...but after looking at him I will not post them...he looks rough!

Happy 12th Birthday Mark!

It's hard to believe Mark is 12 today!  Time has gone by so quick.  I remember the day Mark was born like it was yesterday...I also remember the day Mark was diagnosed like it was yesterday as well!  Both were life changing days.  Of course the newest to the list is the day Mark's kidneys failed.  All of these events have been life changing for me...and boy have I learned a thing or two!
The day Mark was born I learned a love that is indescribable.  I remember my tears and just holding him and looking at him...it was an instant bond.  I wanted to give him the world...at the moment nothing else mattered to me.

Mark..3 days old

  Weeks after having Mark I knew something was not right.  With many trips to the doctors I was not getting the answer I was looking for.  Finally we ended up with a chance meeting at Children's Hospital Boston with Dr. Irons.  She had happen to diagnosis, and work with a couple families that have children with Wolf-Hirschhorn Syndrome (4p-).  Before I knew it the test results were back.  We had a family meeting to discuss the results.  When they told me Mark's diagnosis at the moment I was fine..no worries at all.  Then they started to talk more and more about the risk, and all the medical teams Mark would need to see.  At this point they were being proactive to try to see where Mark was exactly.  After many weeks of day after day trips to CHB...it hit me...my baby would not have the "typical life" that most kids have.  Around this point in time the doctors were expecting a life expectancy of 5 years.  There just wasn't enough information on 4p-.  I think back now on how devastating this was to me a young mom.

After his first surgery at 11 months old...loving his Papa.

  I was hurting so bad, but was determined to stay strong for Mark.  I had my bouts of depression and feeling so sad for Mark...then it hit me..why be sad Mark was the happiest baby around.  I think around that time was when I learned to embrace this journey.

Happy 1st Birthday!

Mark has taught me more then I can tell.  I have gained many great people in my life due to Mark.  Today I think about now and what I have learned from the past.  I'm a mother, an advocate, honorary nurse, and a friend to Mark.  Would I change that...NO!
I have an idea of what the future holds for Mark.  I will see to it that he goes as far as he can.  I also carry a lot of fear for the future...I don't want to age...Mark needs me and always will.  I find myself constantly protecting him.  From his laziness at home...I will just do it for him (yes I am a push over)....to kids looking at him or treating him differently.  I just want to be here forever..holding his hand.  I use to be shy about my life and who Mark is.  Now if I could scream it from the roof top I would.  I just want to share and educate.  We don't have a "normal" life all the time...but we try.  
Meet Mark...Love him and become one of his "people".  He rarely forgets people he meets...he is a lover.  That alone is the thing about Mark that makes all the hard days disappear.
Happy 12th Birthday Mark....I Love You more then you will ever know.

Visit to the Kidney Doctors at the age of 16 months

First Bike Ride July 2000

Mark and Mom

Dialysis Birthday!

Today was a day of celebration for Mark at dialysis!  He was spoiled from the moment he walked in the door!

Mark loved the thought of having a party at dialysis....he asked me on the way in if I thought he would be able to have cake in the dialysis unit.  That is typically against the rules...no food no drink in treatment area!

But not today....

Also some special guest showed up to wish Mark a Happy Birthday...

What a great afternoon Mark had, and was spoiled by all his dialysis friends and staff.  Mark received many gifts and lots of warm birthday love!

This afternoon was lots of fun...When it came to other things we didn't get to far!  I did find out that our donor information was sent over to The Brigham!  All we can do is hope at this point that they will move forward with the appointments on their end.  We have yet to hear from the urologist about Mark's report and native kidneys....Tomorrow I will start calling his office to try to get some answers.  I really don't want to be a stalker...it makes me feel uncomfortable..but I am sick of waiting.  Wish me luck!!

Quick Update

This week...so far so good!  Mark's last culture came back negative....woohoo!  This means no catheter replacement!  Today we will be celebrating Mark's Birthday at dialysis.  Mark is so psyched about this.  Hopefully this will be the last day we have to stay late at dialysis as well.  These 1 hour post antibiotic treatments are getting old.
  For me I will be working hard to touch base with our transplant nurse.  I am currently on the hunt for some answers this afternoon...hopefully no later then Friday.  I'm looking to find out if our donor was cleared for the first half of appointments...if so appointments can be booked in Boston soon.  Mark will be cleared by next Tuesday evening I hope.  Next thing on the agenda is...here we go again...Will his native kidneys be removed??  I was told last week that if they do have to be removed, it has to happen 2 weeks prior to transplant.  I just want to scream!!  All I want is answer about all of this by the end of this week.  We are coming closer and closer to a June transplant!!
Can't wait to blog some answers to my questions soon!

Welcome Home Kane Family!

Surprise.....It's official as of today Chris and I are homeowners!  We started our serious house hunt before Mark got sick.  After tons of houses feeling discouraged and a couple turned down offers...Things weren't going so well.  The week that Mark got sick was the first week had slowed down the hunt...It was almost Christmas and hard to coordinate with everyone.
Once Mark got sick a house wasn't our mission anymore...but somehow soon after he was out of the hospital we had a signed PNS.  Lucky for us we know the sellers.  We weren't looking to close in February.  For one I was stressed to the max, and second there was so much snow everywhere.  Winter moves are not fun!  The seller weren't ready for a move til spring...so this was perfect for all of us!  
We will start our move next week.  It will be nice to be settled before transplant and be able to recover with Mark in our new home!

Better pictures to come..this was taken off the Internet!  

Big Apple Circus

Last night we were Boston bound on our day off from the city.  We had 4 free passes to the Big Apple Circus that we had to use.  Mark was very excited.  We got into the city a bit early so we headed to Faneuil Hall for dinner.  Lucky for Mark there was a restaurant that served Mac & Cheese and Grill Cheese.  That was all they served!  After dinner the boys wanted ice cream before we went over to the circus...$12 later for 2 small ice creams..The pigeons were happy because the boys were busy feeding them and not eating!

We had lots of fun at the circus...

Sometimes he still holds my hand!

Mark's favorite souvenir at every event...dog on a leash!

Don't forget to check back in later on today....Today is an exciting day for us...and I can't wait to blog about it!

So Close...But Not Yet

I was hoping today would be the day we would be cleared for transplant.  It didn't work out that way today.  Hopefully by the end of next week.
 Mark started his day at the dental clinic.  After arriving 20 minutes late..Thanks to the truck driver who can't follow directions, and went down Storrow Drive!!  I swear that happens once of week.  There are only 300 signs that say no trucks low clearance.
  When we finally arrived to Children's the nice lady behind the desk rips my head off for being late.  Well let's just say that set my tone for the conversation we had!  Before you knew it we were in meeting with the doctor.  This was after the receptionist told me he wouldn't be able to take Mark.  Today we finally met an amazing dentist at Children's.  It only took 10 years to find one!  This appointment was key for transplant.  After Mark has his transplant he will not be able to see the dentist for 1 year or so.  Mark did an amazing job with this new dentist.  He has always been orally defensive.  He can't handle a lot of texture and gags/chokes a ton.  I wish I was a bit more educated about this issue when he was a baby.  I would have had the therapist work with him a bit more in that area!  After Mark's first somewhat successful dental appointment in years the doctor and I talked.  We decided it is still good to get him into the OR next week for him to be sure that there is nothing he missed.  He didn't see any sign of infection but in this case it is better to be safe then sorry.  This OR trip will give them a really good look and a chance to clean properly along with a set of X-rays.  Normally I would not want him to go under, but the fact that we are not sure when he can get back to the dental clinic after transplant... I am okay with it.
After Mark's dental appointment we headed up to dialysis.  Mark was excited to help Johanna set up for the party!  He was able to decorate and hang out for a couple hours before treatment.  He had so much fun!  His treatment went pretty well today with minimal but enough interruptions.  During treatment it was decided that Mark was cleared to go to the OR next week for his dental appointment.  I also had a brief conversation with his nurse about everything going on.  Normally monthly rounds would be tomorrow over the phone, but unfortunately I will not be available for that meeting.  I have a meeting at Mark school at the same time.  The number one concern at this is the infection in his line.  The cultures keep coming back positive.  This means the medication is not doing the job yet.  Surprisingly Mark has not spiked fevers...of course that is great!  He does seem a bit more tired and a little lower appetite.  He has been receiving the oral/IV antibiotics.  He has also this week having his line locked with antibiotic for 1 hour after treatment to try to get rid of any infection.  After talking to Mark's nurse she said if the cultures come back positive again they will remove the catheter and put a new one in.
With the hopes of a June transplant this is not what I want to deal with!  June transplant is only 8 weeks away...That is going to go by fast.  If all goes well Mark will be cleared next week.  I also have huge hopes that the donor will be cleared to start Boston appointments by the end of this week!

Chef Mark....He looks like he should be in a scary movie!

100th Post!

Wow...I made it to 100 post!!!!  This is an exciting post for me.  I never thought I would enjoy blogging as much as I do.  I love to read blogs.  Most mornings while drinking my coffee I always catch up on my favorite blogs.  I read lots of different blogs...from healthy living, photography, to family and craft/cooking blogs.  I know I'm a dork!  It was what I love to do...even before checking my Facebook on most days!
For me starting a blog was more to cut back on the countless phone calls I was making when Mark first got sick.  I wish I had started a blog years ago to help people more understand Mark and our life!  I have said this time and time again...I am a firm believer that you are given what you can handle in life.  I was blessed to be a mother and advocate for Mark in this life.  I will do all I can do to not let him down.
What I hope for this blog...I hope that I am able to continue blogging even after transplant...just about everything and anything.  From what's going on with Mark to day to day stuff.  I am looking forward to a lot of exciting things coming up for us in the next year...and will be happy to share with our friends and family!

Today we had some fun after school taking our bikes out for a ride!  We have lots coming up this week....  A party at dialysis tomorrow to celebrate spring and Johanna's (Child Life Specialist) going away party!  I will also be celebrating (hopefully), that Mark will officially be cleared for transplant as of tomorrow afternoon.  When I know for sure I will let you all know.  The circus on Thursday thanks to Johanna for the tickets!!

Friday will be a surprise...but something major is in store for the Kane family if it all works out!!  I think this week won't be so bad after all. 

 I was feeling a little bad about Mark's line infection.  Everything is being done to protect him from the infection...so I guess that's all we can do.  IV antibiotics and oral antibiotics with a watchful eye.  There hasn't been an infection in a central line in the dialysis clinic in nearly 2 years!  Leave it to my child to have the rear chance of having an infection.  Mark is the king of rare issues....and that's why we love him!

Catch Up Post....

Last week was pretty busy for us!  We also are looking at a couple busy weeks ahead.  Here is what we have been doing!!
Mark was very excited for the Easter Bunny to come...I was too, but it was a late night for us!  I had Chris and Evy's 30th the night before Easter.  It was a lot of fun...I was tired for Easter!

Happy 30th Chris and Eve!

Yes...The only picture of me from the party...why..why..why?

After a late night the Easter Bunny arrived.

Mark was so excited when he woke up.  He ran into our room and said "The bunny was here!!"  Later that afternoon we enjoyed brunch with my family and had a lazy Sunday afternoon!

Mark said "The Easter Bunny has nice antlers"

Last week we had a change in our week due to Special Olympics...It was hard to adjust but it all worked out.  It' not normal to be home 2 days in a row during the week!   We also had a couple really bad days with Mark's catheter as well.  Mark was spoiled by his friend Danny at dialysis.  He is an older boy who is just so great to Mark.  The Easter Bunny left a real fishing pole for Mark at Danny's house...and Mark got to have dinner with Danny one night last week.  I think that made Mark's week....He loves Danny and his Dad so much!  I hope to remain contact with this family after transplant.

Speaking of transplant...Our donor has been moving along with all the appointments that need to be done. Children's should have a copy of all the donors test results as of today!!!  We will then find out if the donor can move forward to the next set of Boston appointments.   So far our donor has had a physical, EKG, xrays, lots of lab work done.  I am hoping we will find out today if we can move forward with Boston appointments!  I feel like everything is moving so fast...I'm having a hard time on focusing on all that we have going on!