Snow Kids

Yesterday was bitterly cold and painful to be outside.  Today was the total opposite.  Bright, clear blue skies, no wind, and warmer temps.  We headed out after lunch...

Overnight the snow changed from dry powder to icy, packable snow.  We could finally play with it and build things.  Here are our snow kids...

 

We decided they looked cuter personalized...

  

Then we played with the mountain on the back porch...

  

The kids wanted a tunnel, but we didn't want them crawling through it- too dangerous, so we made a cave instead.  Julia made it her own little doghouse.... 

 

No Words

We found out today that Heather Miller received her angel wings last night, at home in the arms of her parents.  God speed Heather.  You have touched so many with your amazing strength, courage, and spirit. 

We first learned about this amazing young girl last September.  She had a tremendous love for football and her beloved Pittsburgh Steelers who went out of their way to make her part of their team.

Here is some background to her story from a post last September.

It is heartbreaking to see another child lost.  My heart aches for her parents, family, and friends.  Lord, this is so hard to see and understand when a child must suffer and parents must say goodbye.  I keep thinking of David Crowder's, All That I Can Say...

Lord I'm tired
So tired from walking
And Lord I'm so alone
And Lord the dark
Is creeping in
Creeping up
To swallow me
I think I'll stop
Rest here a while

And didn't You see me cry'n?
And didn't You hear me call Your name?
Wasn't it You I gave my heart to?
I wish You'd remember
Where you sat it down

Chorus:
And this is all that I can say right now
And this is all that I can give

I didn't notice You were standing here
I didn't know that
That was You holding me
I didn't notice You were cry'n too
I didn't know that
That was You washing my feet.

When we don't know what or how to pray, God is there.

When we've given all we have and it feels like nothing, 

God is there.  

When we've given absolutely everything (a child) 

and feel completely empty, God is there, too.  

Winter Wonderland

We woke up to a winter wonderland.  I have to admit it was hard to believe it was going to happen as warm as it has been this week and the dry day we had yesterday.  It started around dinner time and was coming down fast and hard.  The grass was covered within two hours and still falling.

 

Julia enjoyed a snow bowl with her pancakes this morning.

  

The kids couldn't wait to get outside.  We had to wait till after lunch because of the sleet this morning.  The wind and cold was biting, but they enjoyed in nonetheless.

  

As beautiful as it is, it is very powdery, so we can't sled or build with it.

  

And we won't be using our back door today.  I can't believe the size of this drift! Between the wind and snow falling off the roof it is a small mountain!

Julia of course wants to eat it.  She had a great time pretending to be a puppy...

 

Let the Sun Shine!

We've had a great day! All of Julia's scans today were clear, praise God for such an amazing blessing! 

We had a really good day at the hospital.  I know that sounds crazy, but it really is like home to us and today was great.  Julia had her x-rays first and has mastered the posing and freezing by now.  She knows the drill of this whole process.  Then we headed to ultrasound.  Calista did her scan today whom we have had before.  She was happy to see us and the time we spent catching up made the hour go by much faster.  Julia was super-cooperative, as usual.

Then we put on her emla cream and headed upstairs.  The clinic was surprisingly quiet today.  Sadly, 3 kids didn't make counts and were being sent home to try chemo again next week.  But the calmness was a welcome change to the busy week they've had.  She had Ms. Besty to herself and started a painting project while I checked in.

They triaged her and then took us back.  Ms. Karen wasn't there today :( but Ms. Tammy did a great job.  Julia didn't flinch or wimper a bit and the line still works great.  We have been so fortunate she has such a great portacath line.  It has only clotted once in the past year.

Ms. Diane came in to do her physical and let us know the scans were all clear- yippee!!! Now we can breathe and finish the rest of our visit.  Julia was very full of herself today and was making faces and rolling her eyes at Ms. Diane's humor.  She doled out a few furrowed brow stares, too.  Ironically enough not directed at any of the people that actually did the painful procedures.  She was laying on the charm pretty thick, too.  She spent most of the exam trying to frantically down her goldfish crackers around what Ms. Diane was trying to do.  Not being allowed to eat is one of the hardest parts for her.  She was planning her lunch the whole drive in this morning.

They have not heard back from Dr. McMullen about her bowel issues.  They considered sending her for an abdominal x-ray series, but really feel like it is unnecessary.  Between the double doses of miralax she was getting and the bug she had this week, we are pretty confident she is cleaned out.  At thus point she has not gone since Tuesday.  She is doing everything she should be, so this defies all logic.  The only real variable left is that something happened during her abdominal surgery or some sort of adhesions/scar tissue have formed.  Unfortunately not a whole lot can be done about this because going in again would create more.  The next step will be sending her to the GI specialist.  That decision will be made on Monday.

We were not able to get in to see Dr. Pranikoff today about her port removal surgery.  They are working on sometime in February.  At this point the risk of a port line infection outweighs the benefits.  So we'll wait to hear on that one.  A bandaid and a sticker later, we stopped by the art table to finish her painting and were heading out the door to finally get some lunch.

When we picked up Carter the kids were able to get outside and enjoy the beautiful 65 degree weather.  A huge snowstorm is supposed to be rolling in tomorrow, so hard to believe.  But historically, when we get warm days like this the snow follows close behind.  The kids are loving the sunshine...

Thank you to all of you who have prayed, called, commented, and emailed today.  It is the love of all of you that helps carries us through.  Knowing we have so many interceding on our behalf is a priceless gift.  So now we live in the space again.  Her next scan day will be April 22nd.  All her other appointments between now and then are up in the air, so we're not exactly sure what the next few months will look like, but we know she is doing remarkably well.  She is growing stronger everyday and she is one courageous kid.

On the Eve of 'Scan Day'

We have a good couple weeks around here.  We've been trying to get into a new groove and have had some really good days.  We had a 'spring sneak preview' and enjoyed a wonderful week of warmer weather.  The kids loved playing outside.  I forgot how great it is to be able to spend hours in the backyard.  Such a blessing! 

We enjoyed a trip to the zoo.  I love these warm winter days because the place is almost completely empty.  I feel so privileged to be able to spend my days leisurely with kids.  I want to savor every moment while they are both still little. Both kids were able to walk the entire way- several miles! Julia has come so far in a short time.

We've been going for bike rides most days, too.  It still surprises me that they are both big enough to ride now.  Julia has really learned quickly and is working hard to keep up with Carter.

 Julia has been doing well.  Our latest regimen of meds for her bowel issues seemed to be doing the trick then over the weekend she came down with an intestinal bug.  The early days of this week she spent most of her days crying and irritable from stomach pain.  Ironically enough our city's water treatment filters failed this month.  We received a letter in the mail saying "the water safety was compromised, but not to be alarmed unless you have a compromised immune system, are very young, or elderly.  If you showed any signs of gastrointestinal, please contact you doctor." Great.  So a series of phone calls later we were head to the peds office with stool cultures in hand.  You know you've been at this too long when you can  have the supplies and can prep your own stool cultures at home (though the nurses really appreciate it!).  Anyway, it is likely nothing but a virus, but I'm not a big fan of the city for taking this long to tell us and not giving us (and everyone else vulnerable) the chance to give her bottled water for added protection.

 

As long as her stomach virus remains in check, tomorrow is her next scan day.  If she is still sick they don't want her in the clinic, obviously.  They have been slammed recently.  When you have a patient load of 100 and only 16 hospital beds things can get complicated when people are sick and others need inpatient chemo.  There is so much flying around right now that makes everything harder on cancer patients.  We are praising God that she has not been admitted since October and has stayed healthy until this recent little bug.  She has had no fevers or so much as a runny nose.  As anyone with young kids knows that is a miracle in itself.

As scan day has gotten closer, the anxiety has been seeping in.  I hear in my head the words I never want to hear said out loud.  I was trying to explain what it feels like and the best analogy I can think is this.  Imagine you were told the exact day, in advance, that your family would be in a car accident.  Only you had no idea the outcome.  It could be anywhere on the spectrum of not even a scratch or dent to life threatening injury.  You just have to wait and see. I trust God completely to continue to carry us through this journey, but that does not mean it will be easy and free from pain and suffering.  We have experienced that already.  I have complete faith that He is in control of this situation, but that does not guarantee healing.  I hear people say that so often.  Or faith is not outcome-dependent.

We have praised God since the earliest moments of her diagnosis, not because of circumstances, but for who He is.  In the midst of suffering and unknowns and huge life challenges, God's glory shines even more brilliantly.  A calm, gleaming, perfection in the midst of chaos.  We hung on to that rock from the beginning and enjoyed the still waters in the midst of the storm.

We do not know what will happen tomorrow, or next month, or next year (to any of us); but we know our God is sovereign, eternal, everlasting, all-powerful, and good.  In that we can rest and know that He is in control....  God- who created the universe, heals of the sick, raises the dead, binds up the broken, redeems the sinners, and IS everlasting.  I don't know about you, but I wouldn't want anyone else calling the shots.

The timing of our Beth Moore Bible study, Believing God, could not have been more perfect, but that's how God works (when we let Him and don't get in the way).  Countering our fears and anxieties with God's Word and truth has been a powerful thing.  None of this study has just been words on a page or 'book smart' theology.  We are walking the walk and living the truths.  God is so good.

Tomorrow will be a long day.  We start at 9:00am with her ultrasound and chest x-rays.  Then we head to the clinic for her physical, labs, and port flush.  We'll talk more about her chronic constipation and bowel issues, too.  They are contacting Dr. McMullen (radiation oncologist) to see if he thinks any of this may be from the radiation or if he has any other ideas.  It is all still a big question mark as to the specific cause.  They are considering sending her to GI for a second opinion.  She has never had problems before the cancer and now they will not resolve.  We were told at the last appointment we would possibly meet with the surgeon tomorrow about her port removal, but they couldn't see her, so that will remain for now.

Thank you for all your continued love, prayers, and support.  This is definitely a marathon, not a sprint and we are so blessed to have so many lifting us up in prayer and caring for our family.  We pray God touches your lives in a very personal and meaningful way!        

Julia's Cancer (the short story)

For those of you who are just joining us, here is the shorter version of Julia's cancer journey.  There is much more in the archive links on the side of the blog, beginning on March 25th, 2009.

************************

In March of 2009, Julia was two years old.  She was talking, laughing, singing, playing, and growing just like any other toddler.

We had just potty trained her and she came down with a UTI (her first).  Her symptoms were classic and the antibiotics brought relief.  The pediatrician wanted her to have an ultrasound and VCUG study to make sure there were no problems.  This is not common practice until several UTIs, but it was at our office.  I was hesitant to subject her to the tests, that were likely unnecessary.  A week later the UTI remained.  I had my answer.  God wanted her to have these scans.  I made arrangements to send Carter with friends and took Julia to our local hospital.  We planned to rejoin him at lunch.

The tech started her ultrasound while Julia lay on the table chatting.  She lingered a long time on the left side and then went out to get another tech.  They both looked again.  They took us out in the waiting room and told us to head back across the street to the pediatrician's office- she didn't need the other scan.  I knew something was very wrong.

We sat in the exam room at our pediatrician's office.  He came in and sat down and began to calmly talk.  "When they did the ultrasound they found a tumor.  Julia likely has cancer and we've called to get her a room on the 9th floor at Brenner's Children's Hospital.  Go home and pack a bag, pick up her scans from the hospital, and head to Brenner's."  The world began to spin around me.  I scooped her up, carried her out, and put her in her car seat.  Then I stood in the rain as the hot tears poured down my face.

I called my husband, my parents, and my friends and let everyone know what had happened.  I had an indescribable peace in the midst of it all.  My tears were not out of panic or fear.  I was just so sad for all that lay ahead for our sweet little girl. Then I frantically packed for our admission to the hospital, while Billy fed her lunch and tried to act like everything was normal.

An hour later we walked in to Brenner's and were taken right to her room where Dr. Wofford (her pediatric oncologist) was waiting for us.  She was looking at the scans and giving us the options.  They still weren't sure completely what they were visualizing and wanted to get a better look with their own ultrasound.  They suggested it could be an extra spleen or something else out of the ordinary. They repeated the scan and determined it definitely was a 7cm tumor on the kidney.  (We were not told at that time that kidney tumors are never benign.) In two hours our world had completely been turned upside down.  But as the world was spinning around us, God was holding us safely in the palm of His hand through it all.


The next day Julia was sedated for a CT scan to check for tumor growth in her chest, abdomen, and pelvis.  The tumor was contained to her kidney and she was scheduled for surgery the next day.

She was in surgery for 7 hours as Dr. Pranikoff removed her kidney, the tumor, the surrounding lymph nodes, and explored her abdomen for any spread.  They sent the tumor to pathology where it was determined to be cancerous and a portacath was installed in her chest for chemotherapy. We finally were able to see her at 8:00pm and she was later taken up to the PICU with 2 IVs, an arterial line, NG tube, catheter, oxygen, and portacath.

The tumor was sent off to determine it's type and to stage her disease.  Dr. Pranikoff said it was a very angry looking tumor, covered in bumps and inconsistencies.  He reiterated over and over just how fortunate she was to have it found this early.  Julia was in the hospital for a week recovering from surgery.  We went home for a brief break and before beginning chemotherapy and radiation.

She was diagnosed with Stage 1 nephroblastoma (Wilms' tumor) with focal anaplasia.  She is one of 40 cases found each year, and one of the only ones ever found in Stage 1.  She had no symptoms of the cancer and it could not be felt from the outside.  The UTI that lead to the scans was completely unrelated to her cancer!! It was completely God's intervention that lead us to her tumor.  Most anaplasia cases are found when the tumors are bulging out of the abdomen and have spread to the other kidney or lungs.  We were so grateful, but a long fight lay ahead.  Her anaplasia diagnosis intensifies her treatment.

It was decided by the Tumor Board at our hospital that Julia would receive COG Regimen DD4A: 28 weeks of chemotherapy (vincristine, dactinomycin, and doxirubicin) and 6 days of (sedated) radiation to her abdomen.  Anaplasia cells are very aggressive.  We want to do everything we can to eliminate it the first time.  Of the 40 anaplasia diagnoses each year, 16 will relapse within the first two years post treatment.  She will continue to be scanned every 3 months for the first 2 years.  Then every 6 months and annually.

Julia handled her treatment amazingly well.  She is an inspiration to everyone around her.  She rarely ever cries during port access and chemo.  She loves Nurse Karen and has developed a very special bond with her.  Oncology nurses are angels on earth and we have some of the best at Camp Brenner.

She endured the fatigue, pain, nausea, vomiting, irritability, constipation, achiness, hair loss, labs, blood transfusion, months of isolation, over 50 trips to the hospital, and 3 hospitalizations with such maturity and grace- well beyond her 3 years!

She tells us her new nickname is 'Superhero Julia'.

We know God has ordained this path for our lives and He has never left us through the journey.  The past year has been filled with countless blessing and opportunities.  We have met some amazing people and our hearts have been opened to families of pediatric cancer and the tremendous need for funding for these cancers.  It is a close-knit family that we all pray we never join, but once here membership is immediate and the bonds last forever.

Thank you for stopping by to share our experience.  The prayers and support from so many have sustained us through the past year.

Lego Invasion

Our house has been invaded! We've had Legos around for a long time.  The kids love the Duplos, especially the Bob the Builder trucks.  But this was a big year for Carter.  He has graduated to the Lego City bricks.  Now there are tiny pieces everywhere! Check out the fire station... 

 

They have beds, computers, phones, coffee makers, and even flat screen TVs in there!! Too funny! And of course Carter is very particular about keeping track of all the pieces. We have put each set in its own bag with the directions and that seems to be working...

 But some of these pieces are just so small! I've discovered Crystal Light containers and love them.  The label peels right off and the lid snaps on tight.  So far, so good :)

 

LET THE BUILDING BEGIN!

Sending up Prayers...

UPDATE: Please read Ellie's mom's post Wednesday night (1-20-10 at 6:18pm, she had 2 that night) with her scan results.  And give God the glory!! as she makes His name famous through extreme suffering and grueling life or death decisions.

********************

As we approach our next Scan Day, the 'scanxiety' grows.  It's not a lack of faith, just a reality check for what is possible.  Without these scans we cannot see what is happening inside.  They are such a mixed blessing.  We want the piece of mind, but there are no guarantees.  Whenever she has them we have to be prepared to hear anything.

Her first round of scans, back in October was to ensure that the surgery, radiation, and chemo had worked.  Now this will be our first set without the drugs and treatments.  Our first look to see if anything new has grown (now that we're not controlling it).  We praise God for her complete healing and we walk in that victory daily, but the thoughts that creep in remind us we have to be ready for anything and this will continue for the next two years.  It is a daily exercise of faith to lay down any burdens and anxieties and not to hang on to any of them.  He has been so faithful to carry them all for us.

Many of our cancer friends are at major turning points right now.  I know they would cherish your prayers...

• Kate is battling a brain tumor.  Surgery and chemo have not eliminated it completely.  They are now at an impasse deciding between dangerous surgery, radiation, and stem cell transplant.  Her case is being reviewed by doctors all over the country this week and then they will decide.
• Ellie is battling against an aggressive rhabdomyosarcoma relapse.  She was scanned Wednesday morning at 9:30am to determine if this new chemo is effective.  If not, they have no real options left.
• Heather's Ewings sarcoma relapse did not respond to the clinical trial she tried.  She is at home on oxygen.
• Vinny is back from his dream trip to FL and started his third round of chemo for his relapse of rhabdomyosarcoma.  They have already seen a miracle working as his tumor shrunk.  please pray for continued healing and destruction of all cancer cells.
• Bradley has an aggressive Desmoid tumor in his chest.  It is very difficult to battle (almost impossible) and they continue with surgeries, radiation, and chemo combinations to try and eliminate this tumor.  He has been having severe pain from it recently.

Our Bible study this semester is Beth Moore's Believing God.  It has never ceased to astound me the way God has given me the precise study I need for the precise time.  This study on faith and believing continually is nothing short of divine conversation.  I will talk more about it later, but here are a few points from this week that come to mind as I pray for these courageous kids...

• One of the greatest builder's of our faith tomorrow is remembering the ways He worked today.
• We have no need that exceeds God's power (He's already raised the dead and created the universe!).
  
• Faith is the primary means by which we place our hand in the outstretched hand of God and join Him.
  
• "His incomparably great power for us who believe is like the working of His mighty strength."
  

Party Time!

We finally had Carter's birthday party this past weekend.  It had to be rescheduled because of a site conflict and Carter has been eagerly anticipating this day. 

Can you guess what kind of party he had?

 You guessed it! Marines! Our local gymnastics academy was a great choice. 

Where else can a budding Marine 'parachute' into his own party?

 

 There was lots of jumping...

 

 balancing...

 

 swinging...

 

 and giggling fun to be had by all!

 

It was great to take time out just for Carter.  He invited many of his friends and cousins for an afternoon of fun.  He has really missed playing with them this past year, with Julia's cancer.  It has definitely been the hardest on him.  He has adapted so well and completely understands why we have to be so careful.  After the first few months it, sadly, became normal to him. 

Carter loves gymnastics.  He used to take classes here.  He hasn't been able to this year because it conflicts with Julia's naps and we couldn't run the risk of germs taking her there with us.  It was such a treat for him to be back again.  Julia was napping at home with friends and he had a chance to be carefree again.  He is so attentive and careful with her when we are out.  It has become second nature.  It was great to see him run, laugh, wrestle, and play freely with his friends again.

 

He loved the tank pinata.  I think all the kids did.  When else in your life does an adult hand you a bat and tell you to hit something as hard as you can? I love that look they give you when you tell them they are up.  It only took one time around the circle before the candy was flying and the kids were squealing.

 

 It was a fun party.  The kids were all really sweet.  Carter was beaming when we got in the car afterward.  he said, "Mom, that was so fun! And it was so nice of my friends to bring me such great presents." He was relishing the joy of being the honored child for the day.  You so deserve it, Carter!

 

Happy birthday little Marine!

Out of the Mouths of Babes

Carter:  "Julia, let's be sojourners."

Me:  "What is a sojourner, Carter?" (curious to what he thought he was saying)

Carter:  "A traveler. We're a family of sojourners.  Can we travel to Walla Walla, Washington?"


Where does he learn this stuff?!

In Stark Contrast

I've been meaning to do a post updating on Julia, but the situation in Haiti right now weighs so heavy on my heart.  As tough as things seem sometimes having a child with cancer or with any illness for that matter, we are still the privileged elite.  I have carried that with me since the day they found Julia's tumor.  As I walked the halls of the hospital, I couldn't help but feel humbled by the expertise and care that surrounded us and was offered to my child.  When our children need medical help we can get it for them.  I cannot even fathom what it is like for the millions of parents in the poorer nations of the world who are helpless to do anything for their suffering children.

Before the earthquake this past week medical facilities were all but nonexistent in the nation of Haiti.  In light of this tragedy they are truly desolate with crush injuries, head wounds, broken bones, and open gashes.  They can do nothing about it, except pray.

Watching all of this has been extremely difficult, but with knowledge comes responsibility.  So many people have opened their wallets to help.  There are many established organizations poised to make a difference- the Red Cross, Compassion International, Doctors Without Borders, and Partners in Health, to name a few.  But money will not fix all of these problems.  Time is against everyone in this situation- heat, lack of food and water, disease, infection.  Logistically the country lacks basic infrastructure even in its peak form- communication lines, roads, power grids, etc.

So what can we do? The simple answer really is to pray.  It sounds so trite sometimes, but there is power to move the universe in the prayers of God' people.  That is no small thing.  There are so many needs to lift up....

• wisdom for decision makers trying to make the impossible happen in hundreds of little daily decisions
• logistical miracles in transporting supplies and specialists
• rapid delivery and operation of inflatable hospitals, mobile clinics, and hospital ships
  
• deep spiritual endurance and refreshment for those on the front lines offering help with rescue, recovery, and medical needs
• for those still trapped Lord, we cry out for mercy and miracles
  
• supernatural relief from pain as thousands suffer extreme trauma without medical help
• endurance and faith for the millions with no options
• trust and faith in their fellow man as they bear the long haul
• comfort and peace for the millions traumatized and now homeless
  
• God's presence in the heart of those offering help and in the lives of the Haitian people
• Lord, replace their fear, pain, and despair with HOPE
  

So as I lift up prayers for Haiti it is hard to not feel guilt over the privilege of our lives.  While hundreds of thousands of people were dying and suffering, we were enjoying an afternoon playing games and reading stories together.  It just doesn't seem right.  "God, please show us our role, each one of us, in Your plans for Haiti." We know first hand the power of intercessory prayer.  Throughout Julia's cancer journey, we have had scores of friends, family, and strangers interceeding on our behalf.  Those very prayers carried us during some of our hardest moments.  It is a power that can be felt.  As I see these images on the screen from Haiti, I am trying to pray specifically for those I see.  I may not know their names, but God does and He does care about each one of them.  Our faith and prayers are a powerful force, that so many disregard.

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So, overall we have been doing well.  The kids have remained healthy.  We are still laying low while Julia has the port.  Simple illnesses will still land her a hospital admission and it just isn't worth the risk.  We have had a few outings that have lifted everyone's spirits.  Our church's MOPS group was kind enough to invite us back and allow Julia to sit and play in the corner of our meeting (with her movie and headphones).  It was a welcome step for us to life after cancer.  I have been able to resume Bible study at night and have been so blessed by it already. 

We have taken some small steps in (re)potty training.  Julia has done well.  Some days she has been in underwear for 5 hours.  It all seems to be coming back to her pretty easily.  Unfortunately, she is still struggling with major bowel issues.  Months of incorrect functioning have left her with the inability to really control the situation at all.  This is a mess (in all respects) when it comes to potty training.  I talked with Ms. Diane at the clinic and she wants us to double all the meds she's on and really clear her out and attempt to get her back to more normal functioning and then try again.  She said it is hard to pinpoint a cause for it all.  Julia's received chemotherapy, she's had radiation to all of her abdomen, and she had all of her lower organs removed examined and repositioned during her surgery.  All of those cause problems that contribute to this, but none of them necessarily have fixes.  Ms. Diane is consulting with GI so we can discuss it at her next appointment and we are doing are part at home.

We also got her blood counts back from her clinic visit in early January.  Her red blood counts and platelets are holding the same, but her white blood count and ANC have actually dropped since December.  This is discouraging to hear.  We know the process takes six months or more, but were hoping to stay the same or move forward.  We continue to pray that the low counts are not a permanent side effect of the chemo and do what we can to protect her from germs.

Her next appointment will be January 28th for x-rays, ultrasounds, labs, and possibly a pre-surgery consult for port removal.  We continue to pray for complete healing and the absence of any anaplasia cells in her body.  Her first set of scans were to determine the success of surgery, radiation, and chemo.  This will be her first set in the absence of cancer- killing treatments.  Please continue to pray she is NED (no evidence of disease) and that everyone of those cells is gone from her body.   

Clinic Day

Sorry it's taken me so long to update.  Thursday we were back at the hospital for Julia's monthly clinic appointment.  We've come a long way from the trips in sleeveless dresses.  It is bitterly cold here, like the rest of the country.  Only somehow we haven't had snow! It seems like a waste of cold air.  How can it be in the teens and not snow!

Anyway, Julia was okay with going.  She whimpered about putting cream on her port, but knew we had to do it.  She was excited to be going to see Ms. Karen.

Julia has been much more likely to wear her hairbows lately.  When she was bald it seems people were more careful about calling her a boy or girl.  But now with the short hair she is called a boy constantly.  No amount of bows, dresses, pink, or skirts convinces people.  It breaks my heart to see her so upset.  I wish I could hang a big sign over her head or something. 

She had fun playing trains and blocks and was excited when Ms. Karen peeked in to call her back.

 

Her port flush went well.  She was a trooper and it flushed with no trouble at all.  They drew her labs, but we haven't gotten the results yet.

Then Nurse Diane came in for her physical.  It was so great to see her.  She hasn't done her exam since October.  She was so cute when she came in cheering that it was her turn.  There's a baby in the clinic and Julia that they compete over seeing and today she got Julia :) All these doctors and nurses are so near and dear to us.  Everyone was pleased with how well Julia is healing.  She has been healthy and out of the hospital for two months now.  She has gained 6lbs since her surgery and diagnosis.  Her hair is coming back and her color has improved tremendously.

They still don't have any real answers to her bowel issues.  They can be chemo side effects or side effects of her abdominal radiation.  There is no way to really know and nothing that can really be done about either one.  We will continue with the meds and they told us to try other OTC products to find a remedy that works for her in hopes of slowly weaning her off of it all.

They also discussed her port.  They feel comfortable taking it out as long as her scans on January 28th are clear.  The reasoning being she has now been without chemo drugs for three months, so if any anaplasia cells/tumors remain they would be growing in this time.  At this point the risks of the port outweigh the benefits (ie. line infections) They are trying to get her an appointment with Dr. Pranikoff on the same day as her scans.  Once he has seen her and done her preop exam, she can have surgery any Friday for the next 4 weeks. So if everything looks good on her scans the port could potentially be removed on February 12th.

 

Before we finished Ms. Diane mentioned potty training.  Julia was trained a year ago before all this happened but has been in diapers since she was diagnosed.  They want her to work on getting out of them.  She asked Julia if she was ready for big girl underwear again.  Her reply, "No." Aren't you tired of diapers? "No." What kind of underwear do you want to wear? "I don't."  Alrighty then.  So wish us luck this week.  It will be a work in progress since she seems to have little control of her bowels lately and is going 6-8 times a day without realizing.  Should be fun for all.  We tried it for an hour tonight and she went to the bathroom and peed 4 times in an hour.  This may take a while...

Note to self...

Never underestimate the creativity and initiative of a group of preschoolers.   The innovation grows exponentially!


Exhibit A:  A 6, 5, and 3 year old playing outside in freezing weather in January will not find it at all unusual or inappropriate to soak themselves with the hose.  The crazy part is they were not at all cold or upset about being wet.  They just didn't like that they were dripping when they walked.  They were so completely soaked in water. Their pants, socks, dresses, coats, etc. were all saturated and dripping like a faucet.

The kids were playing in the garage and driveway riding their bikes.  It has been bitterly cold so we were happy for the slightly warmer sunny day for a break in cabin fever.  As we cleaned up in the kitchen, they came in the open door dripping all over the floor.  We couldn't help but laugh in astonishment.

I so wish I had a picture, just for the memories and to show them when they're older :) 

I asked Carter later what happened...
 
"I sprayed Lily with the hose because it was her turn."
"For what?"
"A free shower. She was offering us free showers with the hose."
"Why did you turn the hose on in the middle of winter?"
"Because we were using it to water the flowers and plants that were dead in the yard."

"Of course."

I love their cooperation and creativity.  Oh, to be a child again- so carefree!

Out of the Mouths of Babes (Costco edition)

My apologies to everyone in the meat section of Costco yesterday.  Our shopping trip went something like this...

Carter: (loudly) "Mom, what did they kill to make this?"
Me: Crabs.
Carter: "What did they kill to make this?
Me: Chicken
Carter: "What did they kill to make this?"
Me: Salmon.
Carter: "What did they kill to make this?"
Me: Pigs.
Carter: Pigs? How?

Don't worry, we didn't go there.  The interesting part is he is not opposed to eating animals for meat.  He just wants to know all the details.  Oh my.  Just not at the grocery store, restaurants, or dinner table please. I am liking the cold produce refrigerator more and more these days. No hard questions :) I can stand the cold.

A Walk Down Memory Lane

I cannot believe it has been six years since we brought this tiny little bundle home to join our family...

Carter William

Born: January 2, 2004   6lbs9oz, 19in

It seems like just last year we were savoring the precious blessing that made us parents...

 He was a happy, social, and bright baby who made everyone smile...

 

 

The first grandchild and great-grandchild on my side of the family, he was showered with attention and devoured it easily...

He was 1 before we knew it...

 

His interests came early.... balls, trucks, sports, books, tools...

 

 He turned 2 and became a big brother.  He cherished the role and adores his sweet sister...

 

 Always there to comfort and entertain her...

 

Sharing his loves and teaching her to do all his favorite things...

 

 She was happy to oblige and soon became his biggest fan...

 

He was born on a very special day, his Mimi's birthday, and has kept her on her toes since the day he was born.  They will always be birthday buddies and cuddlebugs...

 

He turned 3 and jumped right in to Awana, soccer, swimming, gymnastics, tee ball, and kindermusik.  He is a bundle of energy, excitement, and ideas- always planning or organizing something.

 

 

His laugh is contagious especially when he's playing.  You were a smart, athletic, and outgoing 4 year old always eager to jump in to an activity (or organize it!) and learn something new about the world... 

 

He rarely sits still (might he fall asleep), but when he does, he sleeps soundly...

 

 Only to gear up for the next days events...

 

 

You have always been an incredible big brother and this past year you have risen to the challenges of cancer- giving up everything you knew as normal and instead praying for your sister, comforting her, reading her books, soothing her cries, keeping her company, bringing her things, helping her deal with treatments, talking with her, and carrying the burdens and stresses on your little 5 year old shoulders.

 

I am so proud of how you've handled it all. Being five isn't supposed to be this hard.  It makes me sad to look back because I feel like we missed your last year being 'little'.  You have matured so much this past year and are growing up right before our eyes.  I still cherish the fact that you fit perfectly curled up in my arms and if I really want to I can still carry you easily.  I cherish the fact that we homeschool and can spend our days together learning, playing, exploring, and just being. I'm just sorry you've had to learn about cancer so young and spent your days thinking about surgeries, radiation, port flushes, chemo, and germs... instead of playdates, kickball, playgrounds, and storytime.  It doesn't seem fair, but I know God has a bigger plan for all of us.

Carter, you keep us all on our toes from morning till night- playing sports, reading books, playing games, reenacting, pretending, talking, building, imagining, exploring.  At times it is exhausting and we all look at you with exasperation.  But never stop being you.  You are full of drive, passion, and determination that will serve you well in life.  You are a natural born leader and rule follower.  You thrive on competition and sports.  But most of all you love the people around you and make everyone feel included.  Your tender heart for your family and friends is such a blessing.  Your growing faith and knowledge of the Bible is exciting to see.  God is planning great things for you and I am inspired every day to be a a better mother and person because of you.  I am so thankful God chose me to be your mom!

Happy 6th birthday sweet boy!!