CT SCAN CLEAR!!!!

I am so happy to report that both of Jude's 3 month scans are officially clear!  We actually just got home from Childrens Mercy South a little while ago and Dr. Lewing called me on the way home to let me know the good news. I cannot even begin to describe the relief Clint and I feel knowing that of right now Jude has been off treatment and cancer free for 3 months!  I am also so grateful to Dr. Lewing for making sure we knew the results before the weekend.  Simply put: I love that woman! 

It's been a very long 7 days since we've been to Childrens Mercy South twice and Childrens Downtown once.  Wednesday we were at clinic from 9:30am to 6:00pm because we had a tough time getting Jude's IV in.  For some reason the first vein they tried blew, the second one took but was somehow a little messed up so the IV pump kept saying the medicine was done (which when you have 4/5hrs of medicine to go is not a good thing).  So the eventually took that IV out, tried the other hand and that vein blew, and finally had to do the other arm without numbing cream since we had to get started.  That was awful to watch because normally Jude is the easiest, most laid back patient ever.  I think almost every time he's gotten stuck with a needle he says verbatim "I didn't even feel that!" - but Wednesday he felt all of them and was really upset(rightfully so).  Then once we started the IVIg transfusion he started to react the same way as last time with his blood pressure dropping, but thankfully this time it only needed the rate to be slowed down to work.  Thank goodness too because if this new type of IVIg didn't work then we were going to have to look into alternatives like doing shots at home - and for those who don't know me very well...Sarah doesn't like shots and especially will not do them to her kids.  Aunt Carla is lucky this IVIg worked because she was going to have to be the bad guy:)  Jude of course was a champ though.  Needless to say, Target was definitely visited that evening :) 

After Wednesday's whole ordeal I was so worried about having to stick him again today.  Normally I would put the numbing cream on one arm before we left the house so it would be good and numb when we got there but I had no idea where to put it since both arms and both hands were bruised!  So they have this neat little doo-dad and does an instant numbing thing - it actually sounds like when you open a can of soda.  The tried one hand first - that vein blew and then luckily got it on the second try on his arm.  I have no idea what is going on with his veins this week!  We've never had this problem!  And I know it's not the nurses because all the nurses we've had this weeks we've always had - and they rock.  Actually there is this nurse at Childrens South who was the nurse that was with me when we found the tumor and I was all by myself.  Funny enough I've ran into her here in Lee's Summit because she lives here.  The more I am around CMH the more I'm convinced that 50% of the staff is from Lee's Summit.  I know SOOO many people who work there - from a nurse on 4Henson that I grew up with, to the inpatient pharmacist that I went to high school with, to the administrative side where I know a couple of people, to tons of nurses in other departments throughout both hospitals!  Small, small world. 

Well I have to run because we've got to get the kids ready to ride in the firetruck with Mr. & Mrs. Claus tonight for the Downtown Lee's Summit Christmas Tree Lighting.  I'll post pictures as soon as I can. 

Thanks so much for all of your prayers, thoughts, and good vibes.  We love you all so very much. We are also so thankful that Heavenly Father has once again blessed us with clear scans. 

Lots of love,
Sarah

Oops!

I am so sorry everyone, I totally forgot to tell you the results of Jude's MRI.  They came back crystal clear and free of cancer!  Our nurse practitioner, Jill, called that evening of his scan to tell us and of course we are elated!  I posted it on Facebook but forgot to update this - so sorry if I worried anyone!  I promise I will try my best to never have that happen again. 

So tomorrow we will go to clinic and he'll get his monthly exam by Dr. Lewing and also the IVIg transfusion - which will be about 4-5hrs.  Please pray that it goes smoother than last time.  His IGa levels were a touch low, but I don't think enough to qualify him as deficient.  I guess I'll learn more tomorrow when I talk to Dr. Lewing. 

Then Friday is when he'll have his CT scan of the rest of his body. 

One day during treatment I remember our rockstar nurse, Stacy, and I were in Jude's room.  I was reading off Facebook that someone posted the question "if you could have one superhero power what would it be?".  I popped off with "duh! fly!" and then sweet Stacy thought for a second and said "I'd cure cancer".  Wow! That made me feel like a huge jerk - haha!  We laughed so hard at that.  Well I'm going to change my answer - I wish I had x-ray vision so just at a glance I could scan Jude's body for any signs of cancer.  And then if I could pick two it would be flying :)

Please pray the CT scan goes well and comes back looking as good as the MRI.  I'm not sure if we'll know something Friday - hopefully, but I'll let you know!

Hope everyone is doing well!

Love,
Sarah

"I love you all the days" -Addie

I really meant to be updating this a lot more often than I am.  I think about it a lot, but sitting down to download the pics and write is sometimes difficult for me.  I'll work on it :)

We had a wonderful October!  Wolverine and Alice in Wonderland made a debut pretty much the entire month at our house. 

Jude is hilarious when he puts the Wolverine costume on because not only will he only answer to Wolverine, but he also only talks in this gruff, soft voice that is like the cartoon.  His imagination is incredible - I love that so much.  In the rare event that Jude lets Addie put on the costume, she even gets into character!  They are a riot to watch play. 

 

Addie was a dead-ringer for Alice.  She looked so very cute!  She actually surprised me when she picked Alice in Wonderland since I thought we already had it figured out they were going to be Captain America and Captain America Girl (they actually make that costume!).  I remember being a kid and changing my mind a million times before Oct. 31st (sorry Mom, haha). 

Clint and I took the kids to Powell Garden's Spooktacular with my sister Carla and her family.  I just love it!  For those who haven't been, it's a must do for your little ones (but not too little because they might get scared).  You walk through Powell Gardens along a jack-o-lantern lit path and frequently meet storybook characters acting out their story.

 The kids are a hoot because you can't tell if they think it's truly real or not.  At the very end Addie was in heaven because Alice from Alice in Wonderland was one of the stations!  Addie was grinning ear to ear! 

Other than the Halloween festivities, our month has been a really laid back time. A couple of weeks ago Clint took Jude to his very first Chiefs game - they had a blast!  Funny thing happened too...Clint and Jude ran into our favorite nurse Stacy!  I have to admit, when Clint sent me the picture from the game I was a little jealous!

 But then I remembered I was having a girls day with my very, very favorite girl in the whole, wide, world!

I treated her to ice cream for lunch - we had a fun day!

 I love this time of year for a lot of reasons, but for one in particular...being able to pull out the "put it on your Christmas list" and "ya know, Santa's watching" card!  You moms out there know what I'm talking about!  I read on Facebook the other day that this mom tells her kids that those small security cameras in stores are Santa's cameras to keep an eye on kids! Brilliant!  I think I may try it out! 

On November 19th Jude and Addie will be riding with Santa and Mrs. Claus in Downtown LS for the Christmas Tree Lighting.  Mrs. Claus and I both agreed they have more than earned that opportunity.  I haven't told the kids quite yet because I don't feel like answering every day when it's going to happen.  They are going to be soooo excited!  Thanks again Mr. & Mrs. Claus! 

Also, Jude got a speaking part in his preschool Christmas program.  His line is the very last one: "And God bless us, one and all".  His teacher could barely recite the line for me when she was telling me she picked him because she got so choked up.  Clint and I sometimes forget how much Jude impacted everyone else!  As a mother it is soooo heartwarming to feel so much love for your children from others!  I'm sure my whole family will be blubbering messes when he speaks his part.  One thought I can't seem to shake, and may never, is when something like having a Christmas program or even just hearing him belly laughing, I always try and savor it because at one time I thought I may never be blessed to experience those things again.  I guess I don't want that thought to go away because that is what keeps priorities in check.  It makes me sooooo grateful, more than you know - some of you do though :(

So when I was talking with Jude's teacher about the program she showed me Jude's turkey feather he made for their door to his classroom.  Here it is:

Is there anything cuter???? Well, maybe - Addie's way of telling us how much she loves us is "Mommy, I love you all the days".  She came up with that on her own.  I will never get sick of hearing that.  It melts my heart each and every time she says it. 

Tomorrow Jude will get his 3 month MRI scan of his brain and then he'll get the CT of the rest of his body the following Friday.  I can't think about these too much because my stomach starts to get butterflies.  Please pray that his scans will come back crystal clear of disease. 

He also has a clinic appointment in between on this next Wednesday.  My last post I mentioned that he had to get an transfusion of IGg, which helps boost his immune system.  Well we went and he had a reaction to the IVIg(which is the transfusion stuff).  Dr. Lewing said that he may be IGa deficient, which is okay because they have some IVIg that is compatible with an IGa deficiency.  I'm sure most of you are saying to yourself "huh?" - I mainly put that for the people who know what it is.  Translation:  It's no biggie, just a little more complicated now.  When we go on Friday to get his MRI they will do blood work and test for his IGa level and then find out on Wednesday in clinic.  If it is an IGa deficiency and his IGg levels are still low then we'll just do another transfusion that day.   Hopefully his levels will be high - but I'm not putting too much stock it that.  So Wednesday might be a long day for us. 

I will post as soon as I hear any results from the MRI.  I'm sure if they look good and get them back in time that Dr. Lewing's nurse will call me with the results.  They are so good about that because they understand I'm on the edge of my seat until I hear from them. 

Until then, I hope you all have a wonderful rest of the week.  Lots and lots of love to you all! 

Love,
Sarah

Are you shocked????

About time huh?  I'm even a little shocked that I actually have gotten this done.  I swear, this whole year has been the craziest time warp EVER!  Time flies by with day to day things but yet creeps along at the very same time - it's hard to describe.  Nonetheless, I have this up and running and hopefully I can keep it up pretty regularly. 

Jude is doing great.  Jude looks like a regular kid now.  It's crazy to us - I can't keep my hands off of his head of hair!  There's even small things that just make me beam with joy - like the feeling of my lips touching hair when I kiss him on his head instead of skin.  Or sud-sing up his head of hair instead of the few hairs he had left.  Or just watching him eat with ease - instead of trying to bribe him to get it down.  I could go on and on and on.  We are so, so , so grateful.  Jude doesn't really talk too much about cancer really anymore.  He'll occasionally throw in a cancer term or mention Kenzie being an angel up in Heaven, but for the most part I hear a lot about school, Halloween, his ever-growing Christmas List, etc.

Jude is officially into the "why?" stage - which I love!  And last night I caught him trying to laugh along with the adult conversation - but of course not understanding it fully.  I love this stage - I remember my niece Kyndal going through it and just loving it.  Well, loving it and hating it because it now means we have to watch what we say around him even more! :)   His energy level is coming back more and more.  2 years ago I never thought I'd say this, but I love seeing him bounce off the walls hyper!  That is something I definitely took for granted!  So much that when I have to get onto him when it's bedtime, etc., I actually really love seeing it each and every time.  I clearly remember a time when I truly didn't know if I'd ever see that again. 

And then there is little Miss Addie.  She is so precious.  I just love that little girl more than words can express.  She is such a trooper, isn't she?  I love just hanging out with her.  She's started to follow some of her sentences with "for real!" while arching her eyebrows and nodding her head yes, as if I was ever doubting her in the first place.  And the girl LOVES to draw!  She could spend all day drawing - and she's really really good at it.  She can even whip out writing her letters like nobody's business - but the crazy thing is she doesn't necessarily know what letters they are - she just copies the image she sees from memory.  Clint and I truly think she has the gift of art.  It would definitely explain her unique personality to us. 

Addie has really been into relaying messages from God to us lately.  For example, the other day I left to run some errands and my mom came over to sit while she was supposed to be taking a nap.  Well what do you know - right after I left Addie comes out and tells my mom that God told her she could get up from her nap!  My mom tells me this and then follows it with "what was I supposed to say?".  Then last night Addie informed me that God told her that I'm not supposed to put anyone in Time Out.  She definitely is figuring out how to work the system.  She's a smart little girl. 


Clint and I are constantly creating our "new normal" which is not normal at all.  I only say that because we will never get back to life as we knew it, never.  We discovered that on January 6th, 2010 a little part of ourselves died that day - the part of us that was naive to think our kids wouldn't get cancer or bad things can't happen to them.  And although it was a false sense of security, it felt like security.  Now we have this nagging thought in our heads saying "what if".  We are not letting it run our lives, but at the same time we can't, and won't, underestimate cancer.  So creating our "new normal" means figuring out how exactly to live with that nagging voice in our heads and at the same time enjoy life.  This is a lot tougher than I thought it would be.  The nurses and doctors told me it would, but man, I just wasn't expecting this.  At least when we were inpatient there were multiple eyes, other than my own, watching him.  Now, for the majority of the work week - it's me.  I even find myself still a little weird in social situations.  I can't describe it - I just know I feel awkward sometimes- which is something I NEVER have experienced.  No matter where I am, if there are kids and parents running around my first thought is "most of these people don't know how good they have it".  But I'm glad at the same time they don't because that means they haven't been through what we went through.  So if I'm ever quiet around any of you or have a weird look on my face - it's just me working through some stuff in my head - just ignore me please and I'm sure I'll snap out of it in a minute or two :)  We are both hopeful we won't be socially handicapped forever  :) 

Yesterday we went to clinic for our monthly checkup and everything looked great.  There is one thing we are going to have to start doing as a side effect of chemo - he's going to start to have to get monthly transfusions of a different type of blood product than we've gotten in the past.  There is this level called IGG and it's not coming up like it should, which we were warned about from the beginning.  It's a typical side effect from the Rituxin drug and all it means is that his white counts need help keeping up so that he doesn't get more sick than you or I would.  This is something that he may outgrow as he gets older, or possible have for the rest of his life.  But when you put it into perspective, I'd rather be having this problem than not have him here with me at all.  So for how we'll have to go monthly for a 4-5 hour transfusion (which he'll get the first one a week from Friday).  Other than that Dr Lewing said he looked wonderful.  His next set of scans are scheduled for Nov 11 for MRI and Nov 19 for CT.  I will be glad when these get here. 

Well I hope this post finds everyone doing very, very well.  I want to say again how grateful we are for all of your prayers throughout the past year and the continued ones.  God has been so good to us by blessing us with an amazing support system and prayer warriors such as yourselves.  May God bless each and every one of you.

The next time I post will probably be after Halloween so you can see some hopefully great pictures.  Addie is going to be Alice In Wonderland (which she'll look just like!) and Jude is going to be Wolverine - I know, a shock right? 

Lots of Love!

Sarah