Giving Thanks

I love Thanksgiving.  A month to intentionally slow down, spend time reflecting with family and friends, and thank God for our abundant blessings.  Our gratitude muscles have been in the refining process in the past few years.  Having in attitude of gratitude truly is the secret to living in this world. The posture of our hearts shapes our minds, emotions, perceptions, and health.  It is not our circumstances that dictate our lives, it is our response.

God began speaking this into my heart decades ago through the pastor of our church at the time.  He had a host of debilitating medical conditions that left him completely disabled, but he led a joyful and productive life serving God.  He liked to share that he began his day with an 'organ recital'.  He would praise God for all of his organs that were functioning that morning.  When we count our blessings and pour out our thankfulness the rest begins to fade away in the glowing light of God's abundant love for us.

...in my mind I hear the chorus playing...
When all of a sudden, I am unaware of these afflictions eclipsed by glory, And I realize just how beautiful You are, And how great Your affections are for me.

Now don't get me wrong, at times being thankful is work.  We've all had those moments when the kids are puking, the sheets are peed on, the glass gets spilled, the phone is ringing, the car breaks down, the bills are piling up, and we just received bad news.  It is sometimes work to say thank you in those situations, but it changes everything.  To turn it back and thank God for medicine, a washing machine, clean water, friends who reach out, a car to get around, and His amazing provision for our daily needs. Even in our toughest moments, we are abundantly blessed. 

Living intentionally thankful has clearly carried us through the past few years and buoyed us in the storms.  It has kept us abiding in the moment (most days) and given us the eyes to see what God had for us in each day.  It enabled us to find the blessings along the way.  As I have struggled with several medical conditions over the past five years, God has used every hurdle to teach and refine my heart and to receive the blessings of those He has put in my life. It has also given us the eyes to see the blessings in cancer. Yes, there are some.  I still hate cancer and what it does, but their are blessings in the journey. God continued to pour out His abundant love on us even in some of the hardest moments, sometimes in the most simple ways, as if to say "I'm still here."

Last year at Thanksgiving I wrote of our overwhelming gratitude.  It is still a feeling that at times takes my breath away. The same way you can feel like you are drowning in sadness, fear, or worry- you can be overcome in gratitude for God's unceasing grace and love.  I look around daily and say thank you for...

• my precious family.
• good health today.  It is not guaranteed for tomorrow or promised in the future- for any of us, but in today, we rejoice.
• for the simple beauty and perfection that surrounds us every day from the most expansive sunset to the tiniest flower petal.  God's glory is everywhere we look.
• the blessing of a large, loving "framily"- our amazing friends who are like family.
• access to some of the best medical care in the world.  For doctors, nurses, and medical staff who are God's healing hands on earth. We are so privileged.
• the simple pleasures of smiles, laughter, music, hugs, and time with our loved ones.
• our church and the freedom to worship.
• a roof over our heads, warm beds, clean water, and food always on our table. We are among the elite minority in this world.
• our large extended families.
• a loving God who is faithful, even when we are not; who forgives, even when we don't want to; who loves, even when we are unlovable; and who hangs on to each of us, even when we let go.

We have wrestled with God a lot in the past few years.  In the past months I have found myself incredibly sad at times.  Life in the pediatric cancer world comes with a lot of suffering, pain, and loss.  It is just a part of the deal that we cannot escape.  When other courageous cancer warriors suffer, our hearts break.  When precious children earn their angel wings it brings a sadness that leaves you gasping for air.  Where do you put all of this in your heart to keep moving forward in HOPE? I have found the simplest answer I can...  There are things that happen in this world that I will never understand and never find peace with, but ultimately I trust- with everything in me- that God has a bigger plan.  It's okay to hate it at times, but in the end I believe He reigns on the throne.

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

It has been a fun month of celebrations. I love finding these little people all over the house...

The kids have really enjoyed studying about the Pilgrims this year.  Carter seemed to remember everything from last year. We read some wonderful books and had some great discussions this year talking about what their experiences must have been like.  They both liked doing their lapbook activities.  Here's a peek at a few pages...

 
We enjoyed a day of fun with some of our homeschool friends...

Getting in the thankful spirit at Feeney's...

We had a great Thanksgiving weekend at home this year.  Thursday morning we started the day with a service at our church.  It is one of my favorite of the year.  It is a small informal gathering where we sing favorite hymns suggested by the group and take turns getting up to share our thanks.  It is amazing to the ways God has been working in the lives of so many.  It never takes long before the tears begin to flow.  This year was no different.  We shared our family's stories and thanked God, our church, friends, and each other for 
where we are today.  I pray I never forget the sound of Julia's little voice singing the Doxology and Jesus Loves Me with all her might.

We spent the day with friends munching...

playing...

cooking...

and feasting...

We pray you all had a wonderful holiday weekend surrounded by your loved ones and reflecting on the lavish blessings in all of our lives- giving thanks with a grateful heart. We thank God for everyone of you and the connection you have to our lives whether 'in real life' or virtual.  We pray this attitude of gratitude lasts every day, no matter our circumstances.  God bless!

Wolfies Win!

It comes as no surprise to most of you that we are a house full of sports fans.  All kinds of sports.  Right now, it's football.  We are happy to say the Wolfpack is having a great season and there has been lots of joyful Saturdays spent cheering on Daddy's alma mater.

This past weekend was the age old rivalry game between NC State and UNC. This is serious business in these parts.  After a tense afternoon, I am happy to report the Wolfies won 29 to 25!! Four in a row!! We celebrated with a family trip to the park and dinner at one of our favorite restaurants.

 

I decided to commemorate the win with a blast from the past and some of my favorite pictures of the kids.  Carter was 2yrs and Julia was 5 months old....

Let's Go Wolfies!!

Lily Update

Thank you all for your prayers and love for Lily and her family yesterday.  She is in the PICU recovering from surgery.  The surgery went well.  There were no complications.  There was discussion during surgery about whether or not to remove her kidney to improve access to the tumor.  They decided to proceed after several consultations and removed one of her kidneys.  They were able to remove some tumor from her abdomen, behind her kidney, and in and around the aorta.  In the end the kidney was deemed unhealthy and had evidence of old tumor, so everyone is confident the best decision was made.  Though neuroblastoma tumor still remains in Lily's body, this gave the doctors a chance to really look at what they are dealing with and get samples for pathology.  With all the scanning technology we have, nothing replaces actual hands and eyes of the surgeon and pathologists on the tumor itself.

Lily is recovering well.  She has been in and out of sedation and is intubated.  She also has a central line, 3 IVs, an NG tube, port access, and a foley.  She has needed a lot of blood, but seems to be handling it all well.  She is in the care of a wonderful staff and pain management team at CHOP and her parents have been very pleased with her care. She has been calm and cooperative today when alert and doing her best to help out the nurses.  Lily, your are mature and wise beyond your years and such a hero in our books. Praying for fast healing and no pain!

Wilms Tumor Symposium (Saturday)

Saturday morning we all met in the lobby again to trek over to the metro station.  I'm sure we were a sight as we paraded across town with Melissa as our fearless leader. It was a unanimous vote we wanted her in charge of the herd :)  We arrived at the CHLA campus and were met with breakfast as we prepared for the symposium.

Emma, you looked so cool! :)

Dr. Dome kicked things off and gave us a genetics lesson on the ins and outs of Wilms.  We learned about all the genetic markers that have been identified and the puzzle pieces still missing. Some of the genes at play in Wilms are WT1, betacatenin, WTX, BRCA2, IGF2, MYCN, and p53 (the most commonly mutated cancer gene).  Different types of Wilms' involve different genes.  Dr. Dome also explained how tumors form in the first place.  A gene mutation must occur on both chromosomes in two separate events.  This is why tumors are rare, thankfully.  He then described the unique challenges of each of these gene mutations.  The p53 gene is present in almost 75% of anaplasia tumors.  These cells do not respond to stress and therefore chemo does not induce the intended cell death.  This is one of the many challenges.  He said the current top relapse drugs for Wilms' are cytoxan and topotecan.

 

What does Dr. Dome see on the horizon for new drug development? Drugs that use a candidate gene approach and target specific gene responses.  We also need better xenograft models to test the current chemo drugs on the market. He also stressed the need for parents to push that relapse tumor tissue be sent to the NTWTS bank to be used for sensitivity studies and cell growth studies.  And of course all of this research needs better funding (Support Curesearch/COG!!). 

Then Dr. LaQuaglia gave us the surgical issues surrounding Wilms.  He is the surgery guru for pediatric cancer from Sloan Kettering in NY.

He began by discussing scanning and their different uses.  MRI can determine the difference between nephrogenic rests and Wilms'.  It is also helpful for vascular issues.  CT is best for lung nodules above 3mm.  X-ray can show lung lesions as small as 1mm.  Then he showed us video of an actual tumor removal surgery.  That was a little shocking.  Didn't see it coming at all.  It's something we have all thought about and heard described about our children, but watching it was a whole other thing.  Sadly, he stopped it before the tumor was actually pulled out.  Talk about anticlimactic! I think we all wanted a chance to cheer and applaud :) He also talked about some of the new surgical advances such as robotics, cryosurgery, and radiofrequency ablation.  The latter two are promising for tumors on tough areas, but overall the gold standard is still to open the patients for the surgeon to actually inspect the area and handle the delicate tumor removal surgery by hand. So thankful for the experience and gifted hands of all our surgeons!

Then Dr. Perlman spoke.     (collective pause...)

For all of us parents, meeting her in person was surreal.  Such a hero to all of us. Her lab in Chicago is the Central Review for ALL Wilms' tumors in the US and she is the scientist behind the entire process.  Her eyes have seen every one of our children's tumors and made the official diagnosis.  There are 500 cases each year and almost all of them are reviewed by her.  Before this process was initiated, 50% of anaplasias were incorrect and 15% of FH cases were mis-staged. She has been the Central Pathology reviewer since 1999. It is her signature on the report that makes everything final.  It is a name we all know so well, but now we were able to get to know her as a real person.  She shared with us all the critical pathology issues and we looked at slides just like she sees in the lab.  She talked about the importance of including the tumor boundary tissue in the samples.  It is vital to correctly assess the type of cells present and the responsiveness of the cells.  The future for pathology will be next-generation sequencing to determine high risk relapse.

Is your brain getting tired, yet? And this is the cliff notes version! It's a good thing we all have studied so much Wilms' research with our kids because the morning really stretched all the brain cells! Fortunately it was lunchtime next.  We enjoyed a delicious lunch on the patio under the warm sunshine.  It is so true that the weather in CA is perfect.  You walk from inside to outside with no climate change at all.  We enjoyed the time to get to know each other better.

It was amazing how quickly we all connected and our conversations started to go deep.  The more we talked the more we realized how much we had in common.  We have ridden the same waves, we have the same thoughts and fears, we have the same ups and downs from cancer PTSD, we struggle with our other children, we try to find balance, etc.  It is hard to explain the validation and encouragement you feel when you are part of a community like this. Everyone understands and you begin to feel like the normal one in the crowd, instead of a cancer mom whom everyone uncomfortably avoids.

After lunch, Jeff Castelaz shared some of his heart and vision for the Pablove Foundation.

It was exciting to hear what has been done and where their commitments lie.  You couldn't ask to be a part of a more wonderful organization. (Support Pablove!!)

Then we heard from Dr. Kalapurakal (Northwestern) about radiation and the new 4D treatments they are using now-IMRT and SMRT- amazing!! 

They can now target so specifically that the radiation moves around certain organs.  Wilms' relapse most often occurs in the lungs.  There is a very high rate of congestive heart failure and secondary cancers from the effects of lung radiation and doxirubicin. The solution? These new types of lung radiation now go around the heart to protect it and account for breathing to cover the lung tissue as it inflates.  They can also shield previously radiated organs from additional radiation.  Another benefit is these therapies take 2 days instead of 6 weeks! It was so encouraging to hear about such a promising treatment solution.  This is definitely an area to celebrate.  

Next up, Dr. Marcio covered the progress of Wilms' protocols through the years and the changes in chemotherapies.  We walked through the NTWTS studies from 1 to 5 all the changes and tweaks made in each study.  It was good to see the progress laid out.  Many times the research study process feels painstakingly slow.  The children on study now are followed 5 years, then the data is processed for 5 years, then conclusions are made and changes looked at for another 5 years.  It seems like an eternity to wait 15 years for new statistics and protocols, especially when your child has cancer right now.   

Then Dr. Dan Green (St. Jude) spoke about late effects for Wilms' tumor survivors.

 

I was very interested to hear what he had to say.  Everything a child with cancer experiences- surgery, chemo drugs, coping meds, radiation, preventative screenings, scans, etc.-  all carry risks and a laundry list of possible side effects.  Where would he even begin?! He gave us the results of a completed study that followed cancer patients and their healthy siblings to isolate health effects.  He summed up the ones that are most common and concerning.  There is a 24x higher rate of cardiac illness and a 50x higher rate of renal failure.  Renal issues are most prevalent in bilateral cases.  The cardiac risks are highest for females, 20 yrs out who received doxirubicin, and left flank radiation.  It was encouraging to hear that regular cardiac exercise counters the damage.  The pregnancy risks from radiation include hypertension, preterm labor, low birthweight, and premature birth.  All Wilms' tumor survivors should be treated as high risk pregnancies and seen by a perinatologist.  Overall, it was much better news than I expected. 

The last speaker was Gay Walker, a palliative care and hospice nurse.  She talked about the many misconceptions of this field.  Palliative care is designed to address the physical, spiritual, and emotional needs of a patient facing a life-threatening condition.  It is designed to begin at the moment of diagnosis.  Some hospitals are better at this process than others, but it is the right of every family to request it.   She talked about hospice services and family needs.  It was such essential information, but very hard to process.  She also took the time for everyone in the room to share their child's name and date of diagnosis.  It was such a stark reminder of the children behind all the science we were discussing.  It brought everything back home again.

At the end they had all the speakers on a panel before us and it was time for Q&A.  The floor was open for any question we wanted to ask to anyone.  Talk about opportunity! There were some great questions presented.  My most pressing one was their stance on "image gently" and the limited use of CT.  It has been a continuing concern for us that Julia has not had a CT since she was first diagnosed.  There was unanimous consensus on the panel that in the case of general cancer, "image gently" plays a limited role, but in the case of anaplasia, CT is essential.  Anaplasia is too aggressive and the survival odds of relapsed anaplasia are 50/50.  There is no wiggle room. I was reassured to get their validation and opinions.  Julia's next scan will definitely be a CT.

The Wilms' Families and Dr. Dome

We have all been so blessed by the internet and the ability to build community as we battle cancer with our children.  It is deep in the heart of Jeff and JoAnn Castelaz (Pablove) to put a human connection on everything they do and that is exactly what happened this weekend.  The boundaries of time, distance, and hospital bureaucracy were all removed.  We were all together for one weekend- doctors, nurses, parents, children, and families- and we built a community. We asked questions, shared stories, celebrated, mourned, encouraged, hugged, and hoped.  It was an amazing experience. I felt like I had to pinch myself so many times- like when we were hanging out at the metro station with Dr. Perlman while she passionately asked us questions about our experiences as parents.  And when we arrived back at the hotel, Dr. Dome took the time to sit down with a mom facing relapse and give her his advice and recommendations.  We are so blessed to have such amazing individuals committed to fighting Wilms' in our kids.  We could not ask for more!

And the blessings flowed both ways.  We were able to get to know our doctors as people and hear their hearts and they came to know us as families and not just names on a file.  We were able to freely ask them questions about anything.  At so many points everyone in the room was in tears, but it was such a healing time. I cannot thank the Pablove Foundation enough for taking their vision and putting all this together.  They executed a perfect weekend- full of class and most importantly focused on the hearts of all those involved in fighting the battle against Wilms'.  This symposium will be a mainstay in our family.  We plan to attend all of them in the future and are encouraged to see the plans God has in store for this group. If for no other reason the trip is entirely worth it just for the hugs. To be able to wrap your arms around the people you have walked alongside on the web was priceless.  The hugs from other Wilms' parents silently speak a thousand words and heal your heart in ways you can never fully describe.

 

Already looking forward to next year! So thankful for the incredible privilege of attending and blessed beyond belief by the Wilms' community.

Say a Prayer

Please join us in praying for our sweet friend Lily from Brenner's Hospital. Lily has Stage IV neuroblastoma, diagnosed in February 2009.  They have never been able to surgically remove any of Lily's cancer. She has undergone almost two years of chemo, treatments, and radiation at three different hospitals, including most recently regular trips to CHOP in Philly.

Today they have actually come to a point where they feel they can remove some of the tumor from her abdomen and pelvis. She is in surgery in Philly, as I type. Please lift up little Lily, her parents Ashton and David, her big sister Anna, the surgeon, and all the nurses caring for her.

Lord, we pray that you healing touch is in the hands of all who come in contact with Lily. Pray that she heals quickly and is able to get back to real business of her life.... kindergarten.

We love you Lily!!

Wilms' Tumor Symposium (Friday)

You are probably wondering where I have been lately.  Sorry for the blogging lapse.  Life has been crazy and I am still just processing all that has happened.

I just returned from a trip to LA.  I know, quite the jet-setter.  I wish I could say it was for some great vacation, but actually it was even better.

The Pablove Foundation was hosting the first ever Wilms' Tumor Symposium. Jeff and JoAnn Castelaz started this foundation after their 6 year old son, Pablo, lost his battle with Wilms' tumor in 2009.  Their mission is to fund research, empower families, and improve the lives of children battling cancer.  They have a accomplished so much in such a short time, but this past weekend tops the list.


I flew out to LA on Friday.  I was greeted by the perfect CA weather and checked in to one of the poshest hotels in the country, who so graciously offered rooms to all of us for next to nothing.  As I settled in that afternoon I had no idea what the weekend would hold.

It all began Friday night.  We had been told to meet in the lobby where a bus would whisk us away to Sunset Blvd for a cocktail party reception at the home of Pablove and Dangerbird Records. (Compared to my normal Friday night in my pjs on the couch playing WordsFree with my hubby on our itouch's- a whole 'nother ballgame! The kind that requires a dress, heels, and shaving your legs!)  As we arrived in the lobby, I came face to face with other Wilms' families for the first time.


When your child is diagnosed with cancer one of the first things every parent does is "google".  We want to learn as much as we can, as fast as we can, and find other people in our shoes.  We ache to know we are not alone.  With the growth of Blogger, and CaringBridge, and listservs there is a community at our fingertips wherever we may find ourselves. For those fortunate ones, there is a group we can turn to for support, encouragement, advice, and understanding.  In the Wilms' world that group is the ACOR Wilms'-Kids.


As I walked into the lobby I came face to face with people whose stories I knew well in print and pictures.  It was as if they had stepped right out of the computer screen.  We all began chatting instantly.  I finally met Eve's parents.  They live only an hour away and we meet for the first time on the other side of the country!

As we climbed on the bus for the first event of the weekend, we came face to face with Dr. Dome.  For those of you in the Wilms' world, he needs no introduction.  Dr. Dome is the premier Wilms' doc in the world.  He is the go-to man in every tough case, the final word on protocols, the chair of the COG board, and the top mind in our field and there he was sitting in the seat in front of me on the bus.  He was the most friendly and personable man you could imagine.

As we arrived at the party, the introductions and sharing continued.  Everywhere you looked there was someone else to meet and hug.  The hugs from another Wilms' parent speak a thousand words.  If nothing else happened the trip would have been completely worth it just to be able to wrap your arms around the people who have walked this road with you.  There were many parents of angels in attendance, too.  I was so glad they had decided to make the trip.  I cannot even imagine how hard that decision must have been. It was so great to be able to hug them in person.  Jeff welcomed all of us to LA and shared some of Pablo's story and his vision for their organization.

Then Hollyn spoke.  She is an amazing 10 year old and 3X cancer survivor!  She shared her story with the group and touched every one of us with her maturity and courage.  Then we heard Erin's story.  Erin was treated at the age of 3 in 1986.  She shared with us her journey to adulthood as a Wilms' survivor and her challenges with her health and long term side effects, as well as psychological and emotional challenges.

Erin and Hollyn

There was not a dry eye in the house. As we looked around the faces in the crowd it really started to hit everyone why we were all there.  All of our children are facing this monster called cancer.  We were all feeling so grateful and blessed to be there, but everyone of us wished there was no reason for us to be there in the first place.

JoAnn and Jeff Castelaz

JoAnn looking at the album that was put together of our Wilms' Warriors and angels...

It was a night of laughs, excitement, fun, tears, and emotion...

 Angie(Skye's mom), Christy(Eve's mom), Tanya(Hannah's mom), 

Kerry(Sicily's mom), Melissa(JoshR's mom), and me

 After a long travel day Friday and hopping across three time zones, we were all thankful to finally crawl into bed.

TO BE CONTINUED........ 

Operation Christmas Child

 
I eagerly anticipate the beginning of November because it is the season for one of my favorite charities... Operation Christmas Child.  Very few organizations successfully tackle global need, on a personal and intimate level, for millions of children every year.  It is a very simple idea, pack a shoebox with toiletries, personal items, school supplies, toys, and candy and ship it to a child living in poverty.  OCC takes it to the next level by including a copy of the gospel in the child's native language and in many areas offering discipleship training.  Inside that one box a child finds joy, love, and true hope.  You can find a more perfect Christmas gift.

I love to hear the stories of changed lives.  OCC has a YouTube site now that lets you watch clips of many of the personal testimonies. (Please preview before sharing with young children.)  Every year I get choked up when I share this lesson because the realities are so hard to see, but the hope is so tangible.  Seeing the shear joy of a child who has never received a gift in their life is heartwarming.  Hearing others share of how they were led to give their lives to Christ and minister to their communities is priceless.

Every year we look forward to filling boxes in our family.  A few years ago we started getting together with other homeschool families for a packing party.  We watch some of the OCC video clips together.  We talk about the lifestyles of children in other parts of the world.  And we talk about the Christian mission and God's plan for our kids.  It is amazing to see their faces light up when they realize God can use them right now in His grand plan to touch a child on the other side of the world.  We always remind the kids that God already knows exactly which child will receive each box.  I love hearing the stories of where the boxes end up.  One family in our church was on a missions trip in eastern Europe.  They ended up visiting the home of the child who received the box they packed in NC.  The chances? 1 in 4 million!  But God doesn't need statistics.

On the OCC website their are many downloadable resources.  We had the kids fill out the "About Me" sheets, attach pictures, and make Christmas cards to include in their box.  In many parts of the world child will write back to the sender of their box.

You can also print tracking forms online when you use the EZ Give option and actually track your box to the country where it is delivered!

The kids put so much time and thought into packing each box...

In the end our 14 children filled over 20 boxes.  It is such a powerful thing when they can learn about the suffering and strife in other countries and see and hear the pain in the lives of children, just like them- but more importantly they can do something to help.  For some it will become a lifelong passion that may take them to a far off place in the future.  Only God knows the plans He has...

If you are interested in packing a box with your family.  This week is National Collection Week around the country.  Just visit the Samaritan's Purse site, get instructions, and find a drop off location near you. May your heart be touched and your lives be blessed!