The Night is Long

 

"When I lie down I say, "When shall I rise?"  But the night is long, and I am full of tossing until dawn."

Job 7:4

We had an absolutely glorious THREE WEEKS at home.  I tear up when I think about it.  Thank you for all of your prayers! They kept Cecilia healthy and strong and able to live a mostly normal life for those three weeks.  I was able to snuggle my littles and laugh with my bigs.  We volunteered at VBS for the week, attended our youth group and the funeral of a dear man and brother in Christ.  Daily Mass became the norm and all of it was magnificent.  As our time drew near to come back to the hospital the dread creeped in.  I prayed "Lord, please help me see Your Will in this."  I lamented to friends and my spiritual director "everything is near perfect except this".  This.  The cancer, the upheaval.  I feel like a snow globe constantly being shaken. Just when everything starts to settle, someone comes along and gives it another shake.  Trying to find footing and accepting what our life is right now is an internal struggle for me.  Inspired by the verse that echoes in my mind, "God's ways are not our ways,"(Isaiah 55: 8 - 9) I often find myself saying, "It's fine," to describe our current situation.  After all it IS fine.  The hospital is amazing, the staff also great, my morning walks here are beautiful even in the rain.  There is always so much to be grateful for.  

Cancer is scary but "fear is not my story", "sickness is not Cecilia's story" HE is.  And so we make then best of our current life circumstances, leave the future to God, and soak in moments together when we get them.  

"And you will have confidence because there is hope; you will be protected and take your rest in safety."

Job 11:18

(Jesse, Sam, Hannah, Mary, Cecilia, Clare and Josie all served at VBS with me last week.  It's so beautiful to watch my kids give back with joy.  They inspire me..)

For everyone keeping track here is what happens next : 

Chemo (Methotrexate) 6/25 (here through 6/29)

Chemo (Methotrexate) 7/2 (here through 7/6)

July 7 Cecilia's 16th Birthday!!

Chemo (the bad stuff...) 7/9 (here through 7/12) (PRAY like you did last time!!)

Chemo (Methotrexate) 7/30 (here through 8/3)

Scans will happen again near the end of the July.  We are praying for all lung nodules to be gone and no trace of cancer still living in the body!!!

Chemo will continue until early October and then we will scan again and revisit what should come next.  

T-shirt orders were extended through 6/29.  The link for adult shirts are HERE and child shirts HERE   Remember this is not a fundraiser - it's just because.  

Please continue to share your prayer requests and update us if you want to.  We love praying for you all!

The Power of Prayer

 

"Peace, be still" is the verse that came up as I prayed for a friend the other day and as I prayed for Cecilia.  The uncertainty of what each morning will bring after chemo treatments can be anxiety provoking.  Historically we have ended up back in the hospital soon after discharge.  And so we all tend to live on the edge of the unknown in those weeks.  But this time we asked for specifics prayers from you all and you did not let us down.  Not only did she not end up back in the hospital she didn't get sick at all.  We went for labs three times and had planned transfusion appointments that she didn't need!  A specific prayer that she asked me to pray was for her to be able to attend the Beloved Summer Kick Off and, as you can see in the above photo, she got to go!  She has continued to thrive and improve (and has started bending her knee!).  This week she is able to volunteer at Vacation Bible School which has been her norm since 7th grade.  Praise the LORD.

At the end of the day Cecilia still has cancer.  There are still a ton of unknowns.  None of us knows how this will turn out.  But a win is a win.  These "ordinary" days are meant to be savored.  Next week it's back to the hospital but today we are home and at peace.  Thank you for your prayers!  

Home (And A TSHIRT Order Opportunity)

 Cecilia and I got home late yesterday morning.  She is well hydrated, not throwing up, but very, very tired (to be expected).  We are hoping to avoid black outs, fever, and dehydration this time so have an appointment early Monday morning for labs and a transfusion.  We will do the same thing on Thursday.  Please pray that her time at home will be enjoyable and that we can actually stay home until our readmit on 6/25.  When we go back we will be in for three weeks in a row (with a few precious days at home in between).

I think we are all feeling the effects of the lengthy process of chemotherapy.  Of course Cecilia is the most affected but the whole family has to navigate this new ground in their own way.  Questions, fear, and at times chaos monopolize our minds and hearts.  The normal things of summer (Pine Hills Camp, Vacation Bible School, Flint Summer Mission) are still there but differently.  Just like everything else.  We are living in two separate realities that somehow come together in a mish mash of time.  Nothing can be planned for certain and all things that do come to pass are appreciated in a new way.  

This particular chemo treatment has us all on high alert and rotating Cecilia's care around the clock so she is never alone.  

Cecilia shared with me that she knows God has a plan but she struggles to see what it could be amidst all the pain and suffering.  Isn't this the eternal question of all people throughout the ages?  One truth about sickness and suffering is that it was never meant to be.  Another truth is that God is in it with us.  Throughout the Bible (and in the lives of the Saints) we see story after story of men and women who suffered greatly and often did not see the "fruits" of their suffering.  But, as I assured Cecilia, the fruits are there.  

Today we celebrate the Feast of the Immaculate Heart of Mary.  Mary is the exact image of what it looks like to live in joy, sorry and uncertainty yet remain faithful to God.  

As we enter into our 5th month of cancer treatments please pray for the intercession of the Blessed Virgin that we can all live as she did.  Please continue to pray for Cecilia, for her health and her heart.  We are praying for you!

_____________________________________________________________________________________

Our Mary has designed a shirt to spread awareness for Osteosarcoma as well as to ask for prayers for Cecilia.  This is NOT a fundraiser and we do not receive any of the proceeds.  The more shirts we order then cheaper they are (I believe Custom Ink refunds then difference automatically if we get more than our targeted order number).  You can pick from a variety of colors and sizes HERE for adults and HERE for children's sizes.  The deadline for this order is 6/22/24.  You can ship to my house (free) or to your own location.  An example of one of the adult shirts is below.  

"Count it all joy, my brethren, when you meet various trials,  for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing."

James 1: 2- 4

It Is Well

After nearly 10 excruciating days (possibly more - I lost track) the stomach flu seems to have left the building.  Our two weeks at home weren't what I thought they would be but they were what God ordained and so we keep moving forward in faith.  

It is well with my soul.

We made the best of the last couple of days with walks and family time and s'mores and sushi.  Only one trip Mott last Wednesday for a hearing test and an echocardiogram.  Quick and painless.

It is well with my soul.

Tomorrow reality hits again with follow up appointments.  Plastic surgery to check on her exterior healing and the osteopath follow up to check on interior healing.  Chemo (better known as "the bad stuff") begins Tuesday.  

It is well, it is well, with my soul.

There has been so much laughter, many tears, questions, peace, and anxiety.  The surgery marked a pivotal time for me.  A time when everything that has gone on since early February avalanched and as we dig further out and further in we navigate with trepidation what the future holds.  We are living in a weird reality where we are planning our annual week of family participation at Vacation Bible School but also leaving open the possibility of a blood and platelet transfusion and looking forward to the "good" chemotherapy weeks.  Summer camps and lazier days, more read alouds mixed with nights listening to the constant IV dripping and the blinding lights that never go off in the hospital. Feeling connected and disconnected at the same time.  Life is so much sometimes.  Always a gift - always a blessing -but sometimes so much.  Continued gratitude, love and prayers to you all!