GI Update

Julia had her follow up in the GI clinic today.  Can you believe it is snowing, again! 

They were very impressed by her progress since her appt two weeks ago.  She had a bit of a slow start, but we accomplished everything they wanted for the first two weeks.  Her bowels emptied so well she didn't even need the follow up xrays.  The PA was very sweet telling Julia what a great job she was doing and how great she looked.  She said we were doing all the right things at home.  I eagerly waited to hear what the next steps were going to be as we move back toward potty training.  The next step in bowel retraining is..... six more weeks of what we're doing now- miralax twice a day.  Guess the diapers are here to stay for awhile.  Apparently this is going to be a much longer process than we had thought.

It is encouraging that we are able to induce proper functioning in her bowels, even if that is with medication right now.  We're thankful everything can work, now we just have to train it to work as it should again.  The whole appointment only took 15 minutes start to finish and we were heading out.  At this point we won't come back to the hospital until her April GI appointment and then for her next scan day.

February Firsts

This new found freedom has been a breath of fresh air in our family.  It has been SO long since we have just enjoyed the simple things as a family.  We were thrilled when we heard about the warm weather and the chance to be outside! Without heavy coats!

Saturday morning started at the Children's Museum.  Julia had no recollection of having been before and didn't know what to expect.  She jumped in pretty quickly and was painting with Carter...  

 

 dressing up and drumming with Daddy...

  

 and playing doctor in the hospital.  I love that they added a newborn nursery- so precious! I have to say the baby lover in me was happy to jump in and pretend, too.  Who wouldn't want to carry around one of those sweet little bundles? (and these don't wake up during the night!)

  

 Carter was happy to join in, too.  He loves any and all things medical...

  

 Then we had another birthday party in the afternoon that included swimming! The kids were so excited.  they haven't been in a pool since August.  There was lots of squealing, splashing, and fun.

 

It was so warm when we left and the sun felt so good we felt we just had to go to the park.  Julia told us she didn't know what a playground was anymore and we had to remedy that.  Some of our friends joined us and there were many more playmates at the park.  Julia was fearless climbing, sliding, swinging, and running.

  

 When we finally arrived home for dinner, she flipped on the fireplace, grabbed a sleeping bag, and curled up in the chair.  I think we wore her out.  That was the most active day she has had in a long time.

  

On Sunday morning we all headed to church and Julia went to her own Sunday School class.  I didn't really know what to expect and how she would react.  For the past week she has been very clingy.  When we're out in public she has a death grip on my finger.  This is all a new world for her.  God knew I needed some reassurance and when I walked up to her room there was Amy from my Bible study.  A friendly face who already knew her history and all my fears and concerns without my saying a word.  Thank you God.  Julia walked in confidently and was happy to see 'her boys'- Jack, Bryson, Will, and Matthew.  She pulled up a chair and got right to work.  

I stayed for a few minutes and she told me she was fine.  I'm so proud of her.  It will never cease to amaze me how she has faced every trial over the past year with such determined grace.  Her moments of weakness come in private when the two of us talk, but in the moment she steps out boldly no matter the procedure, pain, situation, or unknowns. 

  

The adjustment has been easier than I imagined.  The hypervigilance has faded (I do still bristle when I hear or see an actively sick child, but I'm learning to relax) and I'm just savoring the moments in still frame in my mind.  I don't want to forget what a blessing all of this is to us.  God has so faithfully carried us every single step of this journey and He hasn't stopped.  The kids have been singing the song, You Never Let Go (by Matt Redman) lately...

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

It touches my heart so deeply to see them learning just how faithful their God is to each of them, meeting them exactly where they are right now.

I confess I did shed a few tears as I walked away and headed to worship.  Tears of joy for reaching this milestone.  Tears of sadness for the year of innocent childhood she lost.  Tears of gratitude for her healing and strength.  Tears of appreciation for the wonderful people who have faithfully walked alongside us for this marathon journey and are still there.  Happy tears that God has been so good to us.

And another first...  

Julia has been asking daily when she will have pigtails again.  So today we made it happen- 'pebbles flinstone style'.  I would be lying if I said I didn't miss the curls.  Her hair is so different now.  I know it's just hair, but her ringlet, shoulder-length curls were a part of her.  A part that will always live in my memories.  It's just a reminder of the cruelty of cancer.  We don't talk about it and we rejoice with her ever growing silky soft hair.  She's excited to be wearing bows again and will be so happy when people stop calling her a boy.  Kids especially make the mistake.  She gets very feisty about it and makes her point known.

 

I love that silly face, no longer hidden by a mask.  It will be nice when we reach the point when her body is no longer covered by bandages and Sharpie marks.  Though the scars of her courageous battle will always remain.  It's wonderful to see the twinkle back in her eyes :)

Pint-Sized Prayers

A little glimpse into the prayer life of a 6 year old...

Brenners Radiothon

Don't miss the Annual Brenners Hospital Radiothon on WMAG 99.5 today (Thursday) and tomorrow (Friday) as they share the stories of so many families touched by Brenners and precious lives saved.

You can even listen to it streaming online, just click HERE.

We love the doctors, nurses, and staff of Brenners!!

Julia Update

Julia has been recovering great from her surgery.  She was pretty low key on Monday and took a good nap that afternoon.  I went up to get her out of bed to come eat dinner and she was still sound asleep at 6pm.  She opened her eyes and I asked if she was ready to get up.  She said "No, just leave me here.  I'm good." She did finally get hungry, after not having anything for 24 hours.

By evening she was moving around and wanting to play.  She kept her arm against her chest because it was hurting.  It amazes me how readily she switches to her weaker hand and doesn't miss a beat eating, playing, etc.  Kids are so resilient.

I sat and played games with her before bed and we were talking about her surgery.  I told her how proud we were of her and what a great job she did.  She looked up at me and said, "Mommy, when they took me in the surgery room and laid me on the green table, I started to get a little bit nervous." Bless her little heart! You're supposed to be nervous in the operating room Julia. I don't know of anyone that wouldn't say that!  But she knows God is taking care of her and all the doctors and nurses are there to help her.  She said they all had on their masks, just like in Curious George Goes to the Hospital.  I can't tell you how many times we've read that book.  As much time as we spend at the hospital it is still one of her favorite subjects.  Besides George, her other favorites are the Elmo Goes to the Doctor DVD, Big Bird Goes to the Hospital movie, Curious George and the Doctor DVD, and the Oncology, Stupology I Want to Go Home book.

It still astounds me how well she handles everything.  She does not cry, resist, or get upset about anything done at the hospital.  There are so many other kids in their completely losing it over nothing.  She was fully awake when they took her from pre-op and carried her off to the OR and completely cooperative.  She has a grace and peace that are well beyond her three years.  She did say it was hurting Monday night, so I offered her her tylenol (she doesn't like to take the codeine).  She drank it, thought for a minute, and said, "Mommy, it's not working." Wishful thinking.  It eventually helped.

Tuesday morning we headed to storytime for Julia's first public outing without her mask! She was so excited.  She grabbed her little carpet square and ran up to sit in the front.

 As I sat in the back of the room with all the other moms looking out over the sea of kids, I couldn't help but cry.  It is such a blessing to see her be one of them again.  I pray that each encounter brings her more security and confidence in how to be a kid again.  That is by far one of the worst things about cancer, aside from the pain and suffering is that it steals innocence and childhood from kids that can never be replaced.  My tears are not only for Julia but for the dozens of friends we have and the hundreds of other children still in the trenches fighting their cancers.  We will never take a day for granted.

By Tuesday afternoon she was running around like her normal self.  They actually played outside most of the say.  Happy it was sunny and not snowing or raining.  It's still cold in my book, but kids don't seem to notice that.  Evidenced by the fact that they were playing with water guns in the winter coats?! Don't worry they didn't get each other wet.

She is excited about the new freedoms she has and to have reached this stage in her journey.  It is another deep breath for all of us as we leave chemo and radiation behind.  Carter is enamored with her port, as we expected.  He wants to show it to her and talk about it all the time.  She has looked at it, but that's about as much interest as she has.  I can just see the relief in Carter's face that this part is over.  He has been so attentive and concerned throughout this process- keeping track of her appointments and restrictions and discussing the process with her (his way of coping).  So today they are playing cars and vet's office and just being kids.  Thank you God for your tremendous goodness and grace.

She heads back to GI next week and we will continue with her bowel retraining.  Her next Scan Day is April 22nd.

Recovery...

 

Julia was in recovery by 8:30 and starting to wake up.

  

They removed her leads and IV.  She was very eager to drink.  After two cups of water and a purple popsicle, she asked for her paci and a pillow and wanted to go to sleep.  

  

 Anesthesia discharged her and we convinced her it would be nicer to sleep at home. She tried her darndest to lay down in the stroller...

  

We were home by 10am and she is happily snoozing on the couch.

 

And her port-a-cath is now a keepsake and no longer a medical procedure.  The hard disk was sewn into her chest wall, the hard plastic bubble on the top is where the access needle went through and the flexible line is what ran into her heart.  Thanks little port, you did an awesome job!

Thanks for all your messages, love, and prayers!!

Port Surgery Day!

UPDATE: 8:05am... Julia is out of surgery and in recovery.  Everything went great.  They were able to use the same incision for removal.  Dr. Pranikoff came out to talk with me a few minutes ago.  The tears started flowing as soon as when I saw him.  I didn't expect that to happen at all.  We haven't seen him since he removed her cancer back in March.  It is very surreal to be in this waiting room again where we were the day she was diagnosed.  Today is a happy day and we are so thankful God has brought us to this point and for wonderful doctors like him.

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UPDATE: 7:35am... The OR nurse just called and said things are going well and Julia is such a good little girl.  She has about 20 min left in surgery.  Then she will head to recovery.

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The big day is here- the port is coming out :)

Julia is doing well.  She woke up during the night trying to find her water cup and was upset she couldn't have it back.  She was okay though when I woke her at 5am.  We had an easy drive to the hospital- no snow, yet.  David Crowder Band was playing on the radio on our drive in.  His music carried us through her last surgery.  God is so cool like that!

 They took us back and she has been doing good with everything.  She does not seem upset by any of it.  She is very excited about getting this port out.  They wheeled her back with her two dogs by her side.

Thanks for all your prayers! We expect the surgery to take about an hour...