I have really not been very good at taking pictures.  I am so sorry.

But, really, this is just an update on Ike.

After we went to clinic to check on his liver, everything looked great!  His ANC was a little low, but other than that, he looked great.

Which leads to today.

Today, we had clinic once again.  December has been the month of appointments.  And I know once this baby is born, there will be more.

Our day began with a CT scan this morning at 7:30 a.m. to check on his blood clot.  I didn't mention a lot about it, because it has left me sorely disappointed in the past.

 

Ike had to be sedated.  So being 9 months pregnant, my Mom came with to handle Ike.

 

We were warmly surprised!

 

Although the IV part was screaming as usual, he woke up rather pleasant today!  That made things a little easier!  I had them draw labs before they did the CT in hopes that our day would be a little shorter.

 

His ANC was over 2000 again, so up his chemo went.  Sigh. I just hate that.  We are now taking a whole 6MP every day and 8 Methotrexate once a week.  This is with one year left of maintenance.  We also had some issues with the IV, which left us getting a total of 3 pokes today.  This is never fun.  My ears are still ringing from the screaming.  And I know my heart is still hurting watching my son be pinned down.  I really hate that part.

BUT!!!!!

Today.

We got some great news.....

Although his clot is "unchanged", we no longer have to give Ike shots daily!  I almost passed out when they told me this!

Also, I am sure completely due to all your relentless prayers, IKE HAS BEEN EATING!

I love what my Mom says: "Ike told me he was hungry, and I have NEVER heard him say that!"

We are only eating a few things, but I am ok with that.  Let's just say I make a TON of peanut butter and jelly sandwiches!  And I do it happily!

We also have not had any complaints about his legs hurting!  My heart could not be more full.

And now, onto the countdown.  12 months.  One year.  Then we will be done with treatment.  They will monitor Ike for a total of 5 years, but only 3 1/2 years of treatment.  I am not going to lie.  I can't wait.

I can't wait for my life to not revolve around pills, remembering to refill scripts, and questioning ever thing that is wrong with him.  And I am sure that Ike can't wait for no more pokes!

So, although many things happened at Christmas, that post will wait for another day.

Today I relax.  I sit and PRAY for Jordyn to hurry up and get here.  I watch as my son acts like a total boy, and wait for the day for things to be normal.  Whatever that is!

So, Adios!

Well, here is what is going on.

They think the liver enzyme thing is from the infection he is fighting.  But to make sure, we have an appointment on Wednesday for a physical and count check.

I came down with the flu on Friday, which was AWFUL!  My mom came and took care of me and my kids all day.  Thank God!

I was still feeling pretty yucky on Saturday, put had both my Mother in Laws came to help in various ways!  And let's just say, we are ready for Jordyn to come now!  Diapers, clothes, a ROOM FOR HER TO SLEEP IN!  Things like that!

And to add to the excitement on Saturday, Jacob and Papa Q were up until 5 am finishing this for Laney and Ike!

Treehouse bunkbeds!

I would say they love it!

We need to set the crib up yet, but that is pretty much it!  And being 35 weeks and having an OB appointment today, he answered the only question I needed to know.  "Will you stop labor now, if I were to happen  to go into labor?!"  Nope.  They don't try to help it along.  But my kids sure will!  All the elbows to the stomach, the chasing everywhere, and Christmas parties!  Please God!  I'm good with 38 weeks!

Oh, and in all the moving around and organizing, look what we found in the hallway closet....

 

I guess I got some artists on my hands?!

We also have visited various Santas at least 5 times! And I do have at least ONE picture

Gabs is not shown here.  She went "stealth" in her mind, and threw herself prostrate on the floor.  To which Laney quickly replies,  "Look Mom!  Gabby thinks Santa is a king and is worshiping him!"  That girl!  How does she come up with these things!

Gabby was just really afraid to see Santa, but whatever!

 That is my quick update.  I will have more info as of Wednesday!  And I will let you all know!

Linda

I want to quick update on today.  Mostly for me.  I have been trying to keep facts and interesting info on Ike on my blog.  Maybe someday it could help another Leukemia family if they are experiencing some of the same things.  

So we have roughly a year of treatment left.

This past week, they upped Ike's mercaptopurine and Methrotrexate.  He has not had his upped does of Methotrexate yet because last week he had a spinal with that same drug.

So, we developed a fever today. 101.  We called the oncologoist, (oh, THANK GOD Jacob stayed home from work!  I would be panicked!), and they sent us to ER.

I won't get into details, but there is a certain doctor there that likes to fight and try to intimidate me.  Every time.  I don't like.  I know that I do look young, but I am not stupid.  Just FYI.

After spending 4 hours in the ER, (thank you Mom for coming with me!), his ANC is still around 3000. So the fever must be from some unknown virus.  But, we did find out that his liver enzymes are slightly elevated.

A normal person's liver enzymes are about 45.  This level tests how "happy" your liver is.  Ike's is currently at 400.

Last week Monday they were about 60.

Interesting....

Now, they do expect some agitation to the liver because he IS getting chemotherapy every day.  But, this brings about some concerns.

We will have to talk to the oncologist tomorrow to find out more details.

Then, to only make the night more wonderful, I came home.  Jacob was down for the count.  Gabs was standing on a chair in the kitchen, and next thing I knew, puke was EVERYWHERE!

Jacob managed to get her in the tub, while I led operation damage control.

I am sure you can imagine a super pregnant chick, mopping her floors, and trying to disinfect her house from this stomach virus.  Super HOT!  Plus, I am pretty sure this little girl has dropped, and I have been in constant pain.  SUPER FUN!

BUT....

I find myself being thankful.

How you ask, I am not sure!

Here are my thoughts.

I'm thankful Jacob stayed home today.  I did get some rest before craziness hit the fan.  I am thankful that even though going to the ER is NEVER fun, we would not have known that Ike's levels were spiking.  We wouldn't have found out until his next appointment, and who knows what kind of damage could have been done.

Eek, I hear another kid puking!

Enjoy!

I know it has been a long time.  I just really haven't felt like blogging.  Probably because all I can think about it is how miserable I am.....

Yup, 34 weeks.  And if I give birth when I did with Ike and Gabs, 3 weeks left. (Please God, have mercy on me!)

I wish I could say that I have enjoyed being pregnant, since it will be my last time, but I can not.

Yesterday was AWFUL.

I was having contractions 4 minutes apart pretty much all day and night.  And today I had some here and there.

This has happened already during this pregnancy.  I went in to the OB last time to get it all checked out, and I was fine.

So why does this keep happening?

Well, after much thought, I figured out that it is my body's way of dealing with stress.  Both times, we had clinic, and then a week of steroids.  Once the steroids are done, the next day, my body melts down.

It's awful.  And poor Jacob!  I can not even move!

And of course, when a Mom is not feeling good, the kids always find ways to hurt her!  I was begging my kids to PLEASE not touch my stomach.  Like that would ever happen....

So, I will be thankful for this to be done!  I'm SUPER excited to meet my new little girl!  But the pregnancy, I can do without.

Thanks for listening to my rant.  That is enough if you ask me!

Ike's clinic visit went AWESOME!  We still had issues with sedation, and Ike getting his poke.  But it really went well!  Jacob is the master distraction.  Plus, he is Ike's hero. This made everything better!

Ike's ANC was 3000, so they did up his chemo to full dose.  A full 6MP every day and 7 Methotrexate on Thursdays.  The bactrim did not affect his counts, so that saves us an hour at every clinic visit! We also are still trying to find out why his legs are hurting him so bad.  He complains every day.  And this has been consistent for about 5 months.  They are not concerned about relapse, so that soothes my heart.  But it could be a toxicity from the chemo.  We will explore that more later.

And my kids.  Oh how they crack me up!

They really have been great.  But not being able to go outside as much has been making them and me bonkers!  With all the contractions, chasing kids up and down the street is pretty uncomfortable.  Plus all the rain!  Seriously!  So, we have been doing as many things as we can inside.  Although picking things up has gotten pretty difficult.  So, if you come over, don't judge!

Here are a few pictures I have taken!  I am so sorry!  I need to remember my camera more!  We have done so much that I am going to call the last month a wash, and move on.

 The kids went to a party for the Children's Leukemia foundation.  And if you can't tell, my kids love Santa!

Being silly!

 

We got all dressed up for the party!  My Mom took Laney out shopping for a new Christmas dress.  I don't think she has taken it off!

 

This is the only picture of us decorating our tree.  Little kids and ornaments is always disastrous.  This limited my picture taking, as I was trying to salvage some of my favorite ornaments!

And that is my update!  We all LOVE Christmas and have been enjoying every second of Christmas music and Christmas activities!  And soon, the birth of Jordyn!  Lots to look forward to!

Until next time....Whenever that will be!  :)

-Linda

Sorry.  No pictures with this post.  Just an update.

We had clinic on Monday.

It went pretty well.  For the most part, Ike is normal!

The IV start went pretty good.  They got it in one poke, and he didn't attack me this time!  But, it wasn't drawing perfectly, so they had to mess with it a bit.  So by the time it came to leave, Ike had enough.  He did attack me then.  Oh well.  We will just keep working on it!

The biggest change is this. 

We usually get an hour long infusion of this antibiotic called Pentamidine.  Well, there is a national shortage, so they had to put Ike back on bactrim.  Now, I am all about not having to do hour long infusions.  But what I AM opposed to is going to the hospital.

When we put Ike on Bactrim at the beginning of maintenance, it caused a huge drop in his counts, and we ended up in the hospital.  For a week.

 

The docs seem to think that he will tolerate it better this time around.  We go in for a count check in about a week to hopefully catch any drastic drop in counts before having to go to the hospital.  

 

I can't say I am super thrilled with the decision.  But there really is no other better option at this point.  But, hey.  If it works, and doesn't bother Ike too much, it will save us an hour at clinic!  Which I am totally fine with!

 

Sunday marks Ike's 2 years since diagnosis, and I am sure I will post more about that later.  But for now.  One crazy thing at a time!

 

Adios!

Wow.  We have been doing a whole lotta this....

We have gone from one kid to the next with being sick.  First it was Laney with a fever of 101.  This is never good in our house.  Because if Ike spikes a temp that high, to the hospital we go!  So, with lack of sleep and worry, you can imagine how fun it has been around here this past week!  We are not completely out of the woods yet, but thankful for no fever higher than 99.7 for Ike!

Well, lets back it up, BEFORE my house caught the plague!

 

We had the Rodriguez family over!  We went to Harvest Days at Blanford Nature Center.  Complete with hay rides, scarecrow stuffing, crafts, and lots of junk food!  Thanks Mom for treating us!  And Jamie for all your help!  (pregnant Mom vs. 5 kids would not have happened!)

These next pictures are a little blurry.  With my iphone, I can let the kids see themselves as I take the picture!  This has resulted in some of my better pictures of the kids, but grainy.

 

 Seriously. If I could sum Charlotte up in one picture.  This would be it!

 

Jacob has been teaching Ike to fight.  He is pretty aggressive!  And I think Jacob has been enjoying it!

I also had a practice run with our costumes.  Gabby HATED hers!  So we picked a different one for halloween.  Plus, in these pictures, Ike wanted to be a bat like Laney.  He chose a pumpkin for Halloween.  Not exact.  But cute none the less!

These kids will do ANYTHING for candy!

And some random happenings.

Just every day life here.

And last but not least.  The day Ike and Laney had to throw away ALL their markers and crayons...

 

Hot pink Tu-tu and all.  Laney was in time out for a while.  Plus, they colored on my walls.  Sigh.  It's only a season, right?!

We have also had Laney's first conferences.  I was super worried about it.  You see, Laney is just, Laney.

It was better than I expected!

Her behavior is a pretty much it.  Laney does what she wants.  And there is not a lot you can do to change her mind.  You pick your battles!  When she is "on" she is great!  Her teacher confirmed what I already felt.  That Laney is super sweet and she is not malicious with her behavior.  But, we need to get her to focus.

That just continues to bring me to my knees.  I know God can help her.  That He knows her heart.  So, I leave it at that.

Ike has been alright.  He has been complaining a ton about his legs hurting and now it is his arm.  This totally freaks me out.  The docs are not concerned yet, but I constantly find myself keeping my mind in check.  Our next clinic visit is this Monday, the 5th.

So, for now, we are just hunkering down.  Preparing for winter.  Which I do not enjoy.  Stuck inside a lot.  Boots.  Mittens.  Hats.  All while being pregnant.  Bending over is really not my favorite thing to do right now.  But until everyone can put their own shoes on, I get the joy of being constantly out of breath!  9 more weeks right?!  (Praying I go early.)

And that is it for now!

Adios!

Oh my word.

Has it really been almost a month!

I will write as long as I can!

We will start with clinic, already 2 weeks ago!  EEK!

Ike is doing well, physically.

His numbers were good.  He is gaining weight.  In general, he is a pretty normal kid.

Emotionally.  We have hit a wall.

When Ike was first diagnosed, he was 17 months old.  So he didn't really remember all the pokes and going to the hospital.

That has changed.

This last visit was AWFUL!

Kicking, punching, screaming, and begging me to take him home.

You can imagine the emotions this pregnant mama was going through.

I cried this time.

I haven't done that in a while.

So, between Miss Jen and I, we are going to work on anger management with Ike.   At home and at clinic.

I am praying for some wisdom and break through in this area, because emotionally, this sucks.

That's all I can say about that.

Ok, lets see here...

Laney is going to be a bat for Halloween.  Where she got the idea?  The only thing I can think of, is my mom is afraid of bats, and she wants to scare here!  What an odd thing for a 5 year old?

And of course, she had to put Ike in it as well....

We also celebrated Gabby's second birthday!

I am never really one to talk about how fast my kids are growing up, but her life in particular seems to be going by fast!  She seems like such a baby to me still!  When Laney was 2, I thought she was so big!

Gabby got babies, the Cinderella movie, duplos, giant ponies, and baby accessories!  I think her favorite part was helping me make cupcakes!  Laney and Ike loved that as well!

Onto the next....

My sister bought my family a membership to the Children's museum which we have used often already!  

And here are some random photos of a life in the Quist family!

We have been really loving watching baseball, so Jacob had Gabby show off her favorite team!

 

And Laney, once again. Sometimes I wonder what she is thinking....

 

This is Thumbelina.  She was a beloved doll.  She must have gotten caught in a fly trap?!

So random.....

I am officially 7 months!  I will put a photo up here shortly.  And I am proud to say, without saying, that we are officially done having kids!  I'm super excited to meet this baby girl!  But am excited to have my body back.

And well, now everyone is awake, and I must move on with my day!  Sorry for the lack of "flow."  But, I had to get something down!

Adios!