Miss Remi

This little lady was born last week on 11/13/13.  We are absolutely smitten with her and she has all five of us wrapped around her finger already.  Here are a few of her newborn pictures we have done over the last week.

Jake update

I keep thinking I need to post an update on Jake but have been so busy, I have not had the time to sit down and do it.  Health wise, he is doing very very well.  We have been to clinic twice since we have moved to California.  His doctors seem great and very much on top of doing what is best for him.  They have him seeing an endocrinologist every few months to make sure he is growing okay due to all of the radiation he received.  We went in last week and his counts came back fairly normal.  His ANC and white count were a little low, but not low enough for them to be concerned.  He still has those darn lumps in his neck and the doctor found a couple more in his groin area.  We are still watching and waiting and hoping that nothing comes of them.  I think the worst part right now, for him, is getting re-immunized.  He has been in three times to the pediatrician and has received a total of nine shots.  He hates it.  Which is a huge understatement.  It is so ironic to me that he has undergone chemo and radiation and a bone marrow transplant and can get his finger poked without blinking and get three iv's and nose tubes and every thing else but one shot sends him straight over the edge.  It is worse than pulling teeth to him.  Each time he has done better, but he still dreads it, if you cannot tell by the picture.  The first day, we had a long discussion about how lucky he is that he even gets to get these shots.


 It helped quite a bit, but he has a hard time discussing his friends that have passed away this year.  Which brings me to my next point.  Emotionally, he is struggling.  It has been a rough couple of years on this kid.  A relapse, a BMT, watching one of his friends pass away and attend her funeral, wondering if his cancer is going to come back, his dad living out of state for six months, him moving out of state, starting a new school.  Just one of those things is emotionally draining, but all of them put together can be overwhelming.  He is trying to figure out who he is without cancer.  Everyone is always so concerned about getting these kids physically healthy, no one ever talks about what they go through emotionally and mentally.  It has been a struggle.  No one in California knows who he is with cancer... they only see the kid he is now.  And Jake has never been seen that way.  I am actually grateful for it.  He needs to learn what a great kid he is even without the attention from being sick all the time.  He is trying to figure it out.  Most days are fine and he comes home as happy as happy as can be.  Some days are a struggle.  The hard days he wants to move back 'home'.  He wants to be where people remember who he is and not see him for who he is now.  He wants to go back to his friends and his old school.  We are working on it.   Even though some days are so difficult, it makes me grateful we have to deal with this part.  I am grateful for each and every day we get with him.  He really is such a good kid and has overcome so much in his life already, I know that we will be able to get him past this as well.  The kid is a warrior!

10/2/2013

This boy turned eleven.  Eleven.  The older they get, the faster time seems to go.  This kid is awesome. He is still as stubborn and as feisty as ever, but that is part of what makes him Jake.  We had a good day.  He had to attend school on his actual birthday, which he was surprised about considering we have not been to school on his birthday in a few years.  He wanted to take the class Krispy Kreme doughnuts which were a huge hit.  After school we went to Olive Garden and opened presents (he got new running shoes and a new swimsuit for swim team, some skylanders and the new Percy Jackson book) and had cake and ice cream.  It was a low key birthday, but he loved it.



 I am pretty sure each and every kid comes with their own personality considering he has not changed much from last year.  He is still as innocent as ever.  He believes in Santa Claus and the Tooth Fairy whom he just wrote a long letter to the other night.  He is currently on swim team which he loves and has improved so so much in the last couple of months.  He has also picked up water skiing like a pro.  Jeff says he has the best form he has ever seen and Jake is already trying to run the full course (Apparently Jeff is a little jealous.  He must get the skiing awesomeness gene from me.)  Considering he could not even get up on two skis at the beginning of the summer, this is a pretty big accomplishment.  He still loves to cuddle with mom and dad and give hugs and kisses.  I keep waiting for this to stop, but so far, he has no problems hugging us in public.  (Cole on the other hand, gets embarrassed.)  He is at such a fun age, but can also have a little mouth on him when something is not going his way.   He is as stubborn as ever.  He is as brave as ever.  He loves Chik Fil A and despises salad.  He loves to read anything he can get his hands on but hates math.  The librarian at the school knows him by name and he is currently going through about one book a week.  He is my child that I am grateful for every day.  I know how quickly life can change.  I am so grateful for his health and for the calm that has come this year.  We do not take it for granted because we know how quickly it can be taken away.  He is such a good kid.  We have our ups and downs with him, but we are learning this new way of life...cancer free...everyday together and we love him to the moon and back again.