Appointment Adventures

Today, Julia had her 6 month follow up with Dr. Hodges, the pediatric urologist.  We were happy to be going to 'just a doctor's appointment'.  However when it came time to get out of the car...

Julia said, "It's okay you can go in, I'll just wait here."

Me... "We have to go see the doctor, Julia.  It's just a check-up.  We're going to talk and feel your belly.  Don't worry, they don't do ports here."

Julia... "Okay, but can we talk about something else? I don't want to talk about me this time." 

The appointment went well.  Dr. Hodges was happy with everything he saw on the ultrasound and with her progress so far.  The left side- where they removed her tumor and kidney- has healed very nicely.  They were impressed by how good her scar looks.  All her functioning looked healthy and normal.  He doesn't want us to rush the potty training.  She was trained a year ago, but when they found the cancer he wanted her put in diapers indefinitely.  That's where we still are today.  At times it can be a challenge because a child her age who drinks 60oz of water a day pees way more at once than diapers are designed to hold.  He wants her to have time to fully heal physically and emotionally from the cancer treatments and give her body time to bounce back from the chemotherapy.  She is still having bowel issues that would make potty training impossible at this point.  So I guess the diapers will be around for awhile longer.  We're just so thankful everything works like it should.

We left at noon and headed out to get some lunch.  We're driving down the interstate and I heard a loud pop.  I thought something in the car had fallen or something had bounced off the car.  Then I started hearing this loud noise, kind of like a helicopter.  I kept trying to figure out where it was coming from.  Then the rear of the car started shaking violently.  Looking in the rearview mirror I knew something was wrong.  I pulled off the road and sure enough the 'pop' was the sound of the back tire blowing out.  I was so thankful that I didn't loose control of the car! (We definitely have God's protection on the road after our mishap back in April when I blacked out behind the wheel on the way home from Julia's radiation.)

The tire was definitely shot.

Fortunately Daddy was about to start his lunch hour at the class his was taking for work.  So our knight in shining armor came to the rescue.  Yes, I do know how to change a tire, but it takes a lot of wrist strength to get those bolts off.  I make a much better assistant :)  And Daddy came much faster than AAA.  He got us back on four wheels again in no time.  It did kind of surprise me that no one stopped to help in the time we were waiting for him- including the two state troopers who went by.

So all is well as we start the weekend and we are optimistic that November will be a doctor and hospital-free month.  We are thankful that our adventures today were not medical related.  We'll take it.  Tires are easy to fix :)  Her next appointment is December 3rd.

Home Sweet Home and Cancer Free!

We are happy to be home after a long day at the hospital.  But it was all worth it because...

Julia's scans today were CLEAR!!

Praise God! We are so excited to take a deep breath and relax.  We have cleared another hurdle.

We arrived at the hospital around 10:45.  I had a peace about the day, but was prepared for anything.  I truly understand the meaning of 'grace for today'.  God has given us the grace we needed to handle every hurdle we have faced on this cancer journey.  I had the same numb, determined, strength when we first arrived seven months ago an hour into the whole idea of cancer.  And again as she faced surgery, radiation, and chemo.  If you had told me before this that my child would go through this, I wouldn't have ever felt I could handle it emotionally.  But God meets us where we are and gives us our daily bread.  People from the outside may think it's impossible or even judge you for not acting 'appropriately', but until you've stood in those shoes you will never fully understand the power of God's strength.  It's an amazing thing.  We serve an amazing God that continues to reveal Himself every day.     

We checked in and Julia was triaged.  She has gained 2lbs and was 32lbs, 39inches.  Everything looked good and we headed to the Arts table to wait to be called back.  They were painting pumpkins for fall which Julia absolutely loved.  She painted two little pumpkin friends and a few portraits of family and friends.

They called us back for port flush and labs.  Ms. Karen came in to get started and we were chatting and catching up.  She put in the access and connected the first saline flush.  She pushed- nothing.  Pulled back and pushed- nothing.  Two hands- nothing.  We both looked at each other- yikes.  Julia was wailing because all this was hurting. Karen went to get Ms. Nancy, (the 36 yr oncology veteran)- the resident angel of the 9th floor.  Ms. Nancy pushed with all her might and got some fluid to go in, but nothing out.  Blood clot in the line.  Yuck.  Julia's never had any trouble with her port and we want it to be able to get us through the end of treatment labs.  If it doesn't work, she has to have it surgically removed and future labs and meds will be IV and arm draws- not fun.

Ms. Nancy said we should try tPA (tissue plasminogen activator)- a clot-busting drug used for strokes and heart attacks.  They injected 2mL into the port and we waited and prayed for the next 45 minutes.  We hooked her up again.  Ms. Karen, Ms. Diane, Ms. Nancy, and I all held our breaths.  She pulled back and the dark red blood started rushing into the syringe.  YES! Success! She said it 'feels' good as new.  So they drew her labs, did a double flush, and put in some heparin.

Then we headed down to the ultrasound clinic.  Julia is such a trooper for the 45 min scans.  Nurse Anne commented what a wonderful patient she was.  She had been doing 13month olds all morning who give you a real run for your money and can't be reasoned with.  Julia was a walk in the park.

I always feel so conflicted.  Do I look at the screen, not really knowing what I'm supposed to see? I understand the different organs and parts, but not what's dark, what's light, and what's not supposed to be.  She took the time to pint out and explain certain parts of the scan, but then others she would say nothing.  Is that good? bad? indifferent? It's easier to just hold Julia's hand and watch Noggin :)

She also had to throw in a comprehensive renal study for Dr. Hodges (urologist) whom we'll see tomorrow for her 6month follow up.  "You're welcome" again to the insurance company.  Julia originally had Thursday and Friday ultrasounds.  I called all the parties at play and had them cancel one and modify this one for both doctors.  Unfortunately Blue Cross just sends bills not credits, but that's okay :)

Then the tech had to take the ultrasound to the radiologist for review.  I hate this part.  It's like when the teacher says, 'Stay and talk to me after class.' or your mom says, 'wait until I talk to your father'.  You have no idea what to expect.  Would they tell me anything? What if they come back to look again? Why is it taking so long?

Then we waited for X-ray to be ready.  They called her back for her chest series.  She started to cry when we walked in the room and I first I couldn't figure out why.  Then I realized she saw the horrible backboard and straps on the table.  The ER had strapped her down like an infant just a few weeks ago and she remembered a little too vividly.  The tech reassured her that she was a big girl and would be sitting on the stool.  She told me to never let them do that to her again.  Thank you.  It was nice to get some validation that we knew best that time.  She cooperated like a champ for her x-rays and we were off to the echo lab.

We've been navigating the hospital with care, trying to avoid any of the crazy germies around.  The nurses in each department asked if she was sick because of the mask.  Nope, just trying to keep it that way.  It seems everyone in here is sick and we don't want to take home any 'souvenirs'.

Julia thought it was really cute that her favorite dog wears one too to remind all the kids to wear their masks...

She had her echo and they told us everything looked good.  It's so much easier for them to get a good picture and study on a calm, cooperative child.  She, too, had crazy toddlers and babies all day.  She felt like everything was just as it should be- no reason for concern.

At 3:30 we were finally heading back to the Oncology Clinic.  It was pretty much empty except for Ms. Karen.  She told us to wait while she went too find Julia's lab reports.  She looks good.  pretty much unchanged from 2 weeks ago.  Her white blood count is 3300.  Her ANC has climbed to 1100 (good news for her immune system).  Her red blood counts and hemoglobin are still low.  Overall, looking good.  While I read over the lab sheets, Nurse Karen went to look up her scans on the computer.  She yelled to me to come join her.  We pulled up to the computer and read all the final reports.  Everything looked normal in both radiology studies.

No signs of tumor growth or metastastic disease!!

Those were the best words we could have ever heard today.  Some happy screaming ensued.  It was fun to celebrate, just the 3 of us in the whole place :)  Julia was ready to go- except that she never peed in a cup like they wanted.  Ms. Karen and I voted and it was unanimous that we could do it at home and take it to Dr. Hodges in the morning.  So we were free to go and finally get some lunch.

We stopped by the PICU floor on the way out to say a quick hello to Lisa (Nicholas' mom).  I called her cell phone and no answer.  As I was debating what to do next.  Guess who walked out the door? Steve, Lisa, and Nicholas!!! Jail break! He was doing so well and the swine flu is all over the PICU, so they decided he would be better off recovering at home! Amazing!   So they were heading out to surprise his siblings.  God is so cool.  Not only did we get two amazing reports today, but we were able to all walk out of the hospital together.  Now anyone who has dealt with hospital time knows that type of coordination is only a God-thing :)

We are so thankful for good reports today and are celebrating this huge milestone.  We have talked to several others in our oncology family about 'scan days'.  They say it never really gets easier.  The unknown is always challenging.  You learn to live more intentionally and carefree in the days in between and have fewer days of sadness, but the weight of it never goes away.  For the next year she will be scanned every 3 months.  Then the doctors will decide the point to move them out to 6 months and eventually she will only be scanned once a year.

Dr. Wofford talked with me about scanning today.  There is no black and white protocol for Stage 1 Wilms with anaplasia.  There are only a handful of anaplasia cases ever found in Stage 1, so we are figuring it out the best we can.  We did the more aggressive 4 drug chemotherapy and flank radiation in hopes of eliminating any microscopic anaplasia cells that may have migrated, but there is no way to know for sure.  This is the faith part.  We have to rest in the fact that we have done everything we can and know how to do.  She said they did not have any CTs planned for her future.  If they ever seen anything suspicious in her scans, we will do a CT to be sure.  Aside form that she said it is up to us to decide if we want one done.  The excessive radiation is not worth the added reassurance, but will be used if necessary.  I hate that the decision is left mainly up to us, but I am confident in the fact that they have found ultrasounds to be sufficient.  That's how all of this works.  Your faith rests in believing everything you do is enough.

And now we frolic!

Please Pray Now.....

UPDATE: The 'port drano' worked!!! YAY!! Ms. Karen, Ms. Diane, Ms. Nancy, and I were all holding our breath.  The blood poured up the tube- yes! When she first tried an hour ago, Karen was pushing the syringe with both hands and all her strength and it was going nowhere.  After 45 min of TPA.  It works!  Ms. Karen said it feels like new :) We just finished ultrasounds, now off to xray and echo

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We are at Brenner's for Julia's 'Scan Day'.  We have just started the day long process.  When they tried to flush her port for labs, it wouldn't flush.  She has never had problems with it before.  They suspect a clot.  They have injected it with 2mL of TPA- 'port drano'.  And now we wait.  They will check again at 12:45 to see if it works.  Please pray that we can get access.

She still has a physical, echo, chest x-rays, and ultrasound series today.

Thank you...

I want to thank you all for your kind words and most of all prayers.  I have felt them over the weekend.  God was so faithful to reveal Himself in small ways throughout the day on Sunday and Monday.  It is true that after a night of sorrow, joy comes in the morning.  There were moments of bright sunshine, sweet times with Julia, scripture verses brought to mind, feelings of contentment, family laughter, and precious comments from my kids.

This journey is not easy by any means, but this world is like that.  When things get really hard I remind myself that I don't want to get stuck here.  We are just passing through and God has something else for me to do at the next step.  And above and beyond all of that, he has some place better for all His children.  This is not the end.  We are all just passing through.

While We're All Praying...

9:00PM UPDATE: Nicholas' surgery was  huge success.  He will remain in the PICU for his stay.  You can check in on his mom's update here.

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10:30AM UPDATE: Nicholas is out of surgery.  Next few hours are critical.  Please pray...

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Please say a prayer for sweet little Nicholas.

His family are dear friends of ours, a part of our church family, and fellow Brenner's hospital 'residents' (just on different floors).  Nicholas is having surgery to remove his tonsils and adenoids on Wednesday morning at 8:30am.  For a typical child this is not a severe risk, but for Nicholas it is...

You see, Nicholas was born with Downs' syndrome and a congenital heart defect.  He had successful heart surgery and crashed a week afterward.  He was resuscitated and brought back to life after being down for a long time.  Nicholas now faces lifelong challenges that make the little things so much more difficult.  His precious mother has had to resuscitate him once since and he has been hospitalized numerous times.  Tomorrow's surgery is another hurdle in his race...
    

1. He has a low pain tolerance. When he is in pain, he shuts down.

2. This pain could lead to cardiac or respiratory arrest-again..for the 3rd time.

3. Nicholas coughs up his secretions. After surgery it will be too painful therefore he has a high risk of pneumonia.

4. If he becomes too traumatized by the pain from coughing he could potentially not do it again. If he does not cough them up, he will have a higher chance of lung illnesses which could lead to getting a trach.

5. There is a higher chance of him contracting some illness by being in the hospital from 2-10 days.

Please lift up sweet Nicholas, his medical team, his parents, and his sweet siblings (who cannot come to the hospital because of H1N1 restrictions).

My Prayer

Dear Lord,

I'm tired. Not in a physical sort of way, well okay some of that, too.  My soul is just so tired.

...from the isolation.  I miss people.  I miss my friends.  I miss our church.  I miss being around people.  That is my soul's fuel and I am empty.

...from the unknown.  Not knowing what will happen Thursday at the scans...  or the next ones, or the next ones, or the next ones...  Lord, I trust You and I've given it to You, but not knowing is so hard.

...I miss taking my kids out to enjoy life- to play at the park, to go to the pumpkin patch, to eat at a restaurant, to play with friends.

...I'm frustrated with myself.  I know I'm stressed and depressed, but I can't change very much of our circumstances.  My kids deserve so much more from me right now and I hate that it is so hard to give it to them.  My own personal health issues have been an uphill battle.  I have not felt like myself in over four years.  I'm scared to ask if I ever will again. 

...from the lack of order in our lives.  Cancer strikes healthy children and families with no warning.  You are thrown headfirst into the battle of your life and you learn early on you cannot control anything.  When the dust settles, you attempt to take control of life again only to find it comes with an added burden.  You cannot control your life and your family and fully trust God at the same time.  The heart cannot do both at once.  It is so hard to fully trust God with everything when you have seen up close and personal the beast that lurks to kill.  Child-like faith was much easier on the other side of cancer. 

...from the fear of germs.  I try to let it go, but it is so real.  We have child friends fighting for their lives right now from the sicknesses they've contracted.  It is all very real and hitting very close to home.

...from watching what all of this is doing to our family.  We are all broken in some way and it's hard to help everyone at once.

...from the suffering around us.  When you join the cancer family, you share in the burden.  God gives us amazing grace to walk this road and to walk alongside others, but sometimes it just feels like too much.

...from the tears.  The numbness of the past seven months is wearing off.  It creeps up and threatens to choke me if I don't let it out.  Now that I am not having to be strong for her, my own weakness remains.

Lord, we need You to fill up all our holes and put us all back together.

We can't, but You can.  We don't know, but You do.  We are weak, but You are strong.  We fail, but You are perfection.

Thank you Lord, that You never leave or forsake us.  Thank you that none of this is about us.  It is all about You.  Your truths are my mantra...

• "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." 
• "If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him."
  James 1:5 ESV
• "Cast your cares on the Lord and will sustain you; He will never let the righteous fall." Psalm 55:22 
• "For I know the plans I have for you declares the Lord, plans to prosper you and not to harm  you, plans to give you hope and future.  Then you will call upon me and come and pray to me and I will listen to you!  You will seek me and find me when you seek me with all your heart.  I will be found by you declares the Lord."  Jeremiah 29:11-14
  
• "May the God of hope fill you with all the joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13 
  

Lord, you have been SO good to us.  Please give us the mental stamina and the faith muscles to BELIEVE Your promises every second of every day.  We will never be the same.  We are forever changed.  In the places where we are empty, Lord, fill us up with more of You.

Amen.  

Falling Into a Routine

We've been having a good week.  Everyone is healthy which has been a huge blessing and the weather has been amazing.  The kids and I are trying to get back into a new rhythm.  Everything we used to know as normal was thrown out months ago and replaced by 'surgery normal', 'radiation normal', 'chemo normal', and 'hospital normal'.  Now we are entering into 'extended quarantine normal'.  Julia is feeling really good these days and the lingering chemo effects are fading with every new day.  Her mood has been positive and her overall attitude good.  We are so thankful to see her playing, jumping, dancing, and eating.  It's been a long time since she felt this good and we are very grateful.

So now everyone feels healthy, but we can't resume our normal activities.  I know Julia senses the transition because she keeps asking, "am I still sick?" Carter is back to asking daily where we are going and who he will see.  The answer is the same as its been for awhile.  "We're staying home and having fun together."  It just isn't worth the physical, emotional, and financial impact of exposing Julia to germs.  Whenever we have made an exception and attended an event or been around friends, Julia has landed in the hospital with a fever.  So for the next year (with her port) this is just life for us.  It will get better when the 'sick season' lifts.

And as if it weren't hard enough this has to be the year of the swine flu pandemic?! I try to look at it as a positive.  If we have to stay in and be careful anyway, it may as well be dual purpose.  We have had our seasonal flu shots, but not swine flu shots.  The oncologist is imperative that we get them, but doesn't have them.  Unfortunately with Julia none of us can get the flumist, so we begin the elusive quest.  I've been making the phone rounds with all the doctors' offices and health departments- no luck.  Our peds office has us on a list to get one if they ever come in, but it could be a while.     

I don't think I thought much about this stage of the process- when she wasn't in treatment and wasn't feeling bad- but we still have to stay home.  I've spent the week trying to refocus and change my mindset about all of it.  Trying not to feel like a one-man band.  It's tough living daily life without your friends.  That is a lifeline for me and makes me a better person, mom, wife, and friend.  It's by far one of the hardest things to live without.  I've been trying to get more quiet time with God lately and letting Him fill me up and guide my decisions.  I know the strength and wisdom we're after doesn't come from me.  I want it to come from God and have real purpose and His insight. 

I am still struggling with thyroid replacement meds since my thyroid removal last November.  That ride this past year has been enough by itself.  I am now at the point all the doctors are very happy with my levels, but I just don't feel myself and the fatigue is still bad.  So now we are tweaking the timing of the medicine.  I am hopeful this will work.  There is also another medicine we can try, but the supply is severely limited right now, so we'll try this first.

We are trying to find a new schedule to our lives.  Part of this involves going back to the drawing board.  The boundaries, expectations, routines, and discipline in this house have been an adventure ride the past few months, to say the least.  (We're at that point when we need Supernanny to walk in and post the new schedule on the wall.)  So now we start finding a new way to move forward.  When I think about it all it overwhelms me.  So we are trying to make small steps every day.  Some of my efforts have been successful, others went up in flames (only symbolically), but we press on.  Here's some of the fun we've been having...  

The little Marines have still been camping (in the playroom)...

And of course there's been baseball watching.  GO PHILLIES! Carter is elated his team is doing so well again.  I don't know what it is with him.  The first year he watched MLB he rooted for the Red Sox and they won the World Series.  Then his loyalties began to shift.  He still likes the Red Sox, but became fascinated by the Phillies (our family's team) and they won the World Series and continue to dominate.  he thinks this is the way it works now.  I'm excited for him to see his favorite players play hard and do well, but hopefully he realizes it's not so easy and they won't always win.  Julia's been getting in on the action, too.  She wants to catch with the glove like Carter and tries so hard.  After many attempts...

 

...she did it, twice :)

 

We've been trying to get out in the yard as much as we can.  The weather has been gorgeous and I know winter will be here before we know it.  But for now we are loving the sunshine and barefeet in the grass...

 

 

The kids love to jump in leaves, but our yard is a little lacking.  We did make a little pile and they happily jumped in it over and over...

 

Carter had his last game of the season tonight.  The weather was great and the kids played so well- both teams.  They brought out the best in each other and really pushed each other to play better.  Both coaches and both teams' parents were rooting for all the kids and their little faces just glowed.  We are sad to see it end.  After soccer/baseball/soccer, the winter season lacks a team sport for Carter.

I love the faces he makes when he plays...

Julia watched the game for awhile and had a snack then went off to wander.  She ended up playing in the dirt pile behind us.  The little princess in pink perched upon the dirt...

Unwrapping Fall Blessings

We've had a restful and healing weekend around here and are feeling very thankful.

I love the way fall sneaks up in NC, like God just sprinkled it down while we were asleep.  One day it's hot and sunny and before you know what happened- the leaves are changing, the pumpkins are out, and it is cold, blustery, and cloudy.  It's time to break out the sweaters, turn on the fireplace, bake some apple pie, and snuggle under warm blankets.  We've been doing all of the above this weekend.

Mimi and Grandpa were a big help with the kiddos and gave Mommy a break to sleep and get over strep throat and a cold.  Carter loved the attention and they had lots of fun together.  For the most part the week was full of cold rain and clouds, but Carter and Grandpa managed to get out a few times.  They hit the driving range several times this week and after 5 buckets of balls, some putting, sand trap, and short game practice- they both report their game has improved.

They also played several rounds of putt-putt and went bowling.  Soccer practice was rained out, but they did get to play their game on Saturday.

And there's always sports coverage to catch up on.  Carter borrowed Grandpa's SIs for a little baseball reading.

They watched SportsCenter daily and were thrilled to watch some of the NL playoff games together.  Let's Go Phillies!!! We even let him stay up late one night to watch the west coast game.  He almost made it...

 Julia has been feeling steadily better each day.

Her appetite is still good and she is doing pretty well finding things to eat.  Her crying has dropped off almost completely by this morning, so we're hoping she's in the homestretch now.  She has been cuddly, lovable, and very sweet.  It brings me so much peace just knowing she is comfortable.  I've been savoring all the little things and every precious conversation.  She has felt so bad for so long, I want to truly thank God for every little step towards health she is having now.  It is a priceless gift that we are unwrapping anew every day.

The kids have been playing so well together.

We've played lots of board games, painted, baked cookies, and played 'drive-thru'.  They decided to set up a drive up window with their Rose Petal Cottage, play table, and cash register.  This has been a progressing game as they made new parts.  They have made mural-size signs and menu boards for their restaurant and were taking turns driving the Pooh push car up to the window.  Yes, even Grandpa was riding on the Pooh car- quite a sight! On Friday they were pretending to be puppies which they can play for hours lately.

We were sad to see Mimi and Grandpa go, but the kids have played happily all day.  I think their love tanks are full again and we can ride on the surplus for awhile.  It's tough when we all get run down at the same time and a visit from grandparents was a great fix for us all.

This afternoon Carter watched a special, 'Making of a Marine' about Parris Island.  He was very familiar with drill already from 8th&I in DC, but now he had a whole other piece of the picture.  Before dinner he announced he was packing, because the Crucible would be starting at 1am and he needed to be ready.  (For those non-military, the Crucible is the 54hour long conclusion exercise of Marine bootcamp: 48 miles, 36 stations, 45lbs+M16, and only 3 MRE meals.)  He donned his uniform and dog tags and packed his backpack.

I was actually quite impressed when I looked in the bag after he went to bed...

He packed his Marine shirts, coat, raincoat, sneakers, cover, helmet, shoulder pads, notepad, rope, hand sanitizer, and a house key. 

He ventured out back first, then announced he heard tomorrow will be sunny so he'll go out then.

He then recruited Julia to join him.  He packed her gear in the red bag and hauled it up the steps where they were catching the bus.

Julia wanted to know what movie the Marines were showing on the bus? Somehow I doubt there's entertainment :)  Carter said he'd help her out because the Marines sent him a video on the obstacles, so he could help her get ready and they were off. 

She decided to pack her pacifier, too.  She's definitely tough as any Marine I know  :)

Never Give Up

I feel like I'm living in a swirl of emotion again (or maybe I should just say still).

We are still recovering from being in the hospital.  Julia seems to be getting over the croup and is keeping all her meds down.  She has been feeling pretty good.  Her appetite has been strong and we have actually been successful in finding things she wants to eat.  She is still very moody, agitated, and irritable.  We try to just ignore as much as we can, deep breathing works wonders.  Yesterday she was just a mess by the time she took a bath.  She was yelling, crying, and indecisive.  I got her into her pajamas and tucked into our bed.  She said, "I just feel so yucky." She still doesn't elaborate much, so we just leave it at that.  Today she has been pretty tired and slept a lot of the day.  We are so thankful she can rest comfortably and sleeps well.

I am unfortunately now battling a cold- yuck- possibly strep (we'll find out tomorrow).  Doing everything I can to not pass it to Julia, but it's one of those things you just have to accept.  Like they told us at the beginning of chemo.  Your family will get sick and your child will get sick- you can't prevent it.  It is still a daily struggle.  If it were up to me everyone would just stay home until spring.  But that isn't possible.  Billy has to work.  Carter still goes to Awana, soccer games, and Sunday school (most of the time).  It's just so hard.  You feel like you are playing roulette with your child's health and life.  It's hard not to feel guilty when she gets sick.  With this last fever and hospital stay as I was driving to the emergency room at 3am, I couldn't help but wonder where did she get it from? What did I forget to wipe? Did I let her take mask off? It's relentless.  I know I can't control it, but I can't help it sometimes.

We are still very cautious.  Julia stays home 99% of the time.  When she is out, she is in the jogging stroller, shade down, and mask on.  She doesn't touch anything when we are out.  We wipe down surfaces with lysol wipes.  We use hand sanitizer faithfully.  We had our flu shots.  We'd love swine flu shots (if they ever come out!)  Someone said, don't you wish there were special glasses you could wear to see where the really dangerous germs were? Yes and no.  It seems like every time I reach a place of peace about it, trusting God, and just letting go- one of us gets really sick.  It's going to be a long fall/winter.

We are still cautiously waiting her end of treatment scans.  It didn't hit me until we were in the ER over the weekend and they said they wanted to do a chest x-ray for her cough.  As I stood behind the half wall watching her wail strapped to that board, it hit me that we were getting a look inside her lungs.  The big danger for anaplasia Wilms' cancers is spreading to the remaining kidney and spreading to the lungs.  I couldn't help but fear what we might find.  Twice during our stay the nurse said, "Don't leave the doctor wants to talk to you." Each time I thought, "Is this it? What did they find?"

This is something that will never go away.  We have to find a way to make it a part of our life.  We have to live in the spaces in between.

It is just all so messy.  When you think about facing a major challenge in life you want to be as prepared as possible to handle it.  But cancer doesn't work that way.  It attacks in the dark, devours the innocent young, steals joy, and causes pain.  Ask any cancer parent and they will tell you it came out of nowhere and their world just stopped in that moment.  You don't have a chance to prepare- get your life in order, prepare your other kids, get enough sleep, or plan.  You just have to do it.  Life becomes day to day, week to week, month to month in the good stretches.  It is a blessing in that you learn to seize the day and enjoy every moment, but it also brings frustration when you just want to make things better.  The times you want to spend playing with your child, but their pain/mood/drug side effects make that almost impossible.  The opportunities you want to enjoy, but someone gets sick.  The days when the sadness just overwhelms you.  I just feel trapped in it at times.

I've been thinking a lot about families dealing with cancer.  We've been praying for precious little Ellie- a 7 yr old with rhabdomyosarcoma.  She fought her cancer and beat it last year, only to have it tragically recur.  They are now living every parent's biggest fear having to make the decisions about how and if to treat their daughter.  When I read their words, my heart aches, the tears flow, and I feel sick to my stomach.  They are faced with admitting Ellie for 8 straight months of hard core chemo (because of the hospital restrictions now, her twin sister would be unable to visit), possible hip/leg amputation, experimental chemo, or doing nothing (read their Oct4th journal entry).  They just recently posted their decision (Oct14th journal entry) and I honestly have to say I do feel a sense of peace and hope for them.  They have a peace and clarity that can only some from God.  I truly admire their decision and life choices.  And continue to cry out to God on their behalf.

It has ignited a fire in me to use our experience and to fight on behalf of all these kids to bring attention to pediatric cancers.  There are thousands of children whose very life depends on our action. 

• 46 children are diagnosed every day and 12 of those will die within 5 years
• 12,600 children join the cancer battle every year (160,000 worldwide)
  
• 80% of pediatric cancers have metastisized at time of diagnosis as opposed to only 20% of adult cancers 
• the intense chemo and radiation used for pediatric cancers cause lifelong disabilities in many patients
  
• we lose over 3,000 children every year to cancer, cancer remains the #1 disease killer of American children

As September ended and October began it was hard to not be bombarded with the pink.  It's everywhere from the yogurt to clothing to cookies to the NFL to toilet paper to TV.  It has been a hugely successful effort from the hard work of many individuals.  I can't help but feel pangs of anger.  Why does breast cancer month take center stage but childhood cancer is ignored? It's hard to understand.

• 1 in 8 women will get breast cancer, but 90% survive

Breast cancer is the most highly funded cancer in America.  They have developed advanced targeted therapies.  90% of breast cancers are treated with hormone therapy.  Only 10% require chemo and radiation.  This is a huge victory.  Our children deserve the same.  Cancer researchers are working to find targeted chemotherapy treatments.  I love the analogy used by Nancy Snyderman.  "Imagine we have a house with a broken light switch.  Chemotherapy is the equivalent of bombing the house.  Targeted therapy would replace (or eliminate) the light switch." (paraphrased)

I want to see our country helping our kids with cancer.  The science, the researchers and the ideas are out there, we just need the money behind it to make it a reality.  Curing cancer is not just a dream, it can be a reality.  There are so many children with cancer in extreme suffering right now with little or no hope of a cure or even a treatment option. Once you become part of the cancer family, these children become a part of you.  To give up on any of them would be to give up on your own child.  We are all in this together.  We cannot just sit back and watch another child suffer.

Sunny Days

We were so excited to wake up to sunshine this morning and the chance to go home.  She had a good night last night.  She was rather irritable and demanding which means she's getting back to her 'chemo normal'.  She's begin to get frustrated about being stuck in bed.  Her port access wasn't done very well in the ER and causes her pain when she moves, so she has been flat on her back ever since we got here.  Hopefully she'll feel more like moving when she gets out of here.

We found some things she wanted to eat for dinner last night and she's been able to keep everything down.  We've spent the evening trying to find activities she could do while laying down, with some success.  After a while we both needed a break from her mood, so I went to find something new for her to watch from the Family Resource Room.  I got her all settled in and decided to go back and reorganize their movie shelves.  Nothing like a little organization to relieve some stress.  It helped a lot.

We both slept well all night and when they made rounds this morning, the resident told us we could get ready to go home.  She was definitely being discharged.  Unfortunately the turnaround time on H1N1 results is very slow right now, so we have to finish the course of tamiflu at home.  It's a nasty drug to get kids to swallow and more often than not it comes right back up.  So now we just had to wait for Dr. McLean.  He had a busy day today, so we didn't get out until 2:30pm, but were happy to be able to still enjoy the sunshine.  I hear it's only temporary and the cold rain is moving in to stay.

Julia seems to be feeling better.  She's still hoarse, but the cough is much less frequent and 'better sounding'.  She is still very weak.  She looks like a newborn foal wobbling around when she tries to stand up.  This is probably a combination of several things- being in bed since Friday afternoon, not eating much, low hemoglobin, and low platelets.  So we are home now to rest, heal, and stay healthy!!, so hopefully we won't be back before our scheduled scan and labs day on October 29th.

She is very excited to be around her brother again.  The first thing she did when she walked in the house was go to find him.  The swine flu has really complicated life for cancer patients.  Besides the obvious risk of illness, it has also caused all the hospitals to restrict all child visitors.  So siblings can no longer visit the hospital.  In our case it's only for a few days at a time, but for kids on other regimens that means weeks or even months at a time.  Being away from your siblings is really tough and adds even more stress on both sides.

Monday, Monday

Julia continued to feel better last night after a rough afternoon.  She started croupy coughing right before bed.  Nurse Jo hooked up a cool mist contraption for her and she was off to dreamland.  She slept all night and didn't cough once.  

She has remained fever-free since yesterday.  I was able to finally get some sleep, too.  Unfortunately this crazy weather is wreaking havoc on my sinuses and I've been dealing with a migraine.  We got some good sleep this morning, though and she woke up ready to eat.

After breakfast, she started back with the coughing and crying- complaining she just felt bad.  And then she threw up all over us both.  Yuck.  I got her all cleaned up and the bed changed.  We gave her some zofran and she seems okay now.  Shortly after that Dr. McLean came by.  He said they had planned to send her home tonight, but the vomiting just bought her another day.  They suspect it's a side effect from the tamiflu.  Her seasonal tests were negative and would should get H1N1 back by tomorrow and then we could stop that drug.   They are still leaning toward croup/parainfluenza.

So we're back to resting and recovering again.  Her appetite is coming back and we are working on finding things she wants to eat.  Unfortunately it's not quite as easy as at home where I can just go into the kitchen.  here it means going down to the cafeteria and buying choices.  We've been pretty successful so far, so I'm off to get 4 more rolls :)  I always felt a special compassion for the kids that were so comfortable in the hospital their parents could leave them for short periods and they were fine.  I never thought I'd have one of those kids, but I'm thankful she feels so at home here.

And a side note to the two med students in the elevator debating if they felt sick enough to consider missing their rounds- YES!!! It took everything in me not to say, 'Please go home!' I guess the up side is every person in the hospital has to wear gown, gloves, and mask at all times so hopefully their germs aren't spreading far.  

Carter is having fun playing with some friends today and Mimi and Grandpa are on their way to visit.  He is over the moon excited and looking forward to a fun week.

 

Sunday Update

UPDATE: Tylenol seems to finally be working.  After we climbed up another degree into the 104s, she is starting to come down now.  It's really hard when we can't use motrin for fevers.  She is feeling a little more perky and actually just ate the pizza they brought for dinner and is now eating pretzels.  (Her first meal since we've been here.)  My least favorite nurse has redeemed herself.  She was so concerned about Julia, she called Dr. Moore, one of the hospital peds to come assess her.  He was wonderful and said he can be back anytime if we need him.  She also watched Julia for me, so I could go down and get some of the cafeteria Starbucks :)

*********************** 

We were able to get some sleep from 6am to 11am.

 I really feel for all the people who work nights.  The body just doesn't like it.  Fortunately, Julia's on the same schedule and I have no other responsibilities aside from her in here.  The oncologist came around at lunch time (one we haven't met before- Dr. McLean comes back on tomorrow).  She said Julia's counts look good, so they went ahead and started the rocephin for antibiotic coverage.  Her white blood count is actually up from last Monday- huge blessing in this storm!! Her seasonal flu tests came back negative and the H1N1 are sent off and take several days (that's not what they're assuming).  She is still receiving Tamiflu, just in case.  Better safe than sorry.  Her blood cultures have not come back and will take several days.  At this point they are leaning strongly toward viral croup or parainfluenza (similar to RSV, contracted in crowds and child-friendly settings).  She has had croup twice before so we know she is supsceptible.  That said they still may start steroids to try and ease her symptoms.  She was doing okay when they left and had a few popsicles and some rolls.

This afternoon, literally as the doctor was walking out the doors, she started with a worsening cough.  She is very hoarse and feverish.  Her temperature is currently 103.6.  We waiting on the tylenol to work and praying this is not an indicator of the night ahead.  Croup generally worsens on nights 2 and 3, so they want to keep her here to avoid anymore midnight ER visits.  She does not seem to be in any significant pain.  She is content to just lay in the bed.  She hasn't moved on her own since Friday, but seems fairly comfortable.

Thank you all for your prayers and love!

Sunday Prayer Request

Julia continued to run a fever all day Saturday.  She was lethargic, but eating and content.  We put her to bed and she woke up crying at 1:00am with a croupy cough and stridor.  I watched her for about an hour with no improvement.  We called the oncologist and they wanted her seen and admitted.  Unfortunately on the weekends that means through the ER.

We got to the hospital around 3:00am with all our luggage in tow.  They took us right back and got started.  Unfortunately ports aren't the norm like they are up here, so the nurse was asking a lot of questions- like what size access needle to use, how to tape it, etc.- not very reassuring.  She did well and Julia is a great patient.  They brought in a team to hold her and we just kind of looked at them.  She doesn't need any of that.  They drew her labs and blood cultures, flushed her line, started fluids, and swabbed her for seasonal and H1N1 flu.


Then we went back for a chest x-ray, by far the worst part.  I hate that they have to strap them to a board like that with their arms above their heads and face covered.  She recovered fine and they gave her Tamiflu and tylenol when we got back in the room.  At 6:00am they brought us up to the 9th floor to a room.  Nurse Jo was here to greet us.  It is so nice to see familiar faces.  We haven't seen her since surgery back in April.  She was so excited to hear we finished chemo and was absolutely wonderful with Julia. 

 We are still waiting for her counts to come in to find out if she is neutropenic.  That will determine which antibiotic they start.  So now, hopefully we can go to bed and get some rest.  

Please pray for healing from whatever bug she has and rest while we're here.  Pray for safety in treatment and protection from hospital germs.  It was really hard seeing her sick tonight.  It is scary enough when your child is sick, but when you know they don't have much of an immune system it's even more scary.  Please pray for Carter and Daddy at home.  The hospital is still locked down to children, so he won't be able to visit.  The doctors don't have any idea at this point how long we will be here.

Saturday Update...

We all slept last night- HUGE PRAISE!! 

Julia woke up running a fever of 101.9, so we'll wait to see what the weekend holds for us.  The price we pay for leaving the house- aarrghh...

Highlight Reels

It's been a tough week around here.  Carter is still struggling to beat this sinus infection.  The low energy, headaches, nighttime fever, and all night cough bought us a trip to the pediatrician.  They were wonderful and went out of their way to protect Julia while we were there.  I was actually really excited about talking to adults :) He does indeed have a nasty infection (fortunately those aren't contagious) and is now on zithromax.  We are very grateful for the cough medicine with codeine.  He was coughing all night long and no one was getting any sleep.  Now he is able to sleep in 6 hour increments before he needs more.  Hopefully he will turn the corner soon.

Julia continues to struggle this week.  It has really caught us all off guard how rough this last round has been on her.  It has by far been one of her worst.  She is still struggling with nausea and vomiting and is dependent on the zofran. She has sores in her mouth, digestive tract issues, and pain.  Several times during the day she just cries.  Fortunately she usually settles down as long as I lay and hold her.  It is so hard to watch her suffer.  She is still waking around 5am from the pain and nausea.  Carter has been so sweet with her.  They seem to have their own little language and play routines they go trough every day.  He is bringing her a level of joy and comfort that only a brother can.  He's been helping me put her to bed and always tells me he just needs to stay with her.  He's so attentive- setting up her bed, arranging her things- it touches my heart so deeply.

So all that said, we are all feeling sleep-deprived around here.  The past 3 nights Billy and I have been up pretty much all night, with someone, and our days start before the sun.  It has made me realize just how dependent we are on how we feel each day.  How often to we respond to our kids out of exhaustion, frustration, illness, and stress? I want to give them my best in each moment and be understanding.  I feel so bad for Julia.  It makes me feel so guilty at times.  She is the one going through chemo after all, but its tough when you're running on empty and there's no gas station in sight.  There are no quick fixes.  So its a moment by moment effort and lots of prayer.  We do the best we can with what we've got.

There has been some happy fun in the past few days.  So here's our highlight reel...

Julia and Daddy made up a fun game with tennis balls (something like marbles)...

She thought it would be fun to play with Carter.  Well, not so much.  You see Carter watches too many sports.  He has built a play review station on the couch with blankets and pillows (complete with headphones).  When you play a game with him, he constantly runs to the booth to review the play and challenge the call.

Carter, you are a nut!! If playing sports doesn't work out, he has a future in referreeing or commentating.  (At least his has a Plan B.)



I had started doing music class with our playgroup last year and decided that would be the perfect outlet and distraction.  I still have all the supplies handy and the playlists on the ipod, so we had our own music class.  They really had fun.  Here they are pretending to be birds...

I also got out the handbells.  This is a passion of mine.  I was in handbell choirs in middle school, high school, and college.  I did solo ringing in college and then went on to teach youth choirs and camps.  It is something I really miss doing and it was such fun to pass on that experience.  Carter actually learned to play 3 songs!

 

..and Julia was doing it, too.

 

Today we went to the farmer's market for some fresh fall produce.  We were greeted by such a wealth of colors, it actually took my breath away.  Did you know peppers come in purple? I had no idea!

 

The kids were most excited about hugs from dear friends...

 

Priceless.

 

So we've made it through another week on this cancer road.  It has definitely been filled with high-highs and low-lows, but in the end all is well.  We have had some really tender moments between each of us.  (And Julia ate 3 pieces of pizza tonight! Pizza continues to be her chemo food of choice.) We hug a little tighter, linger a little longer, sing one more song, and just soak it all in.  Life is a precious, precious gift- even when it's messy.

The kids finished off the night with some ice cream.

Now they are happily off to dreamland and we are hopeful that tonight we may finally sleep...

 

Carter is so excited to be sleeping in his tent.  On Friday nights they can sleep somewhere fun if they want.  We started this a few weeks ago while Daddy was traveling and they were begging to sleep on the couch.  I finally gave in because it doesn't really matter when you think about it.  I tucked them in and told them they needed to go right to sleep... and they did.  I was shocked.  No talking or anything.  So the privilege remains.  And Carter is sleeping soundly in his tent...