Hope and Light

Those who hope in the Lord will be renewed with strength, and will soar like eagles 

Isaiah 40:31

It struck me this morning as I came back from throwing a load of laundry in on floor 7 that the sign outside Cecilia's door reads "caution: Hazaradous Drugs In Use".  My mind wandered back to the many years of cloth diapers, organic foods, chemical free cleaning products, breastfeeding and all things "crunchy".  All things intended to create a clean living environment and a long life for my children and here we are a year into to filling her body with poison intended, also, to prolong her life.  

We got a great view this time.  The view helps.  It overlooks the arb, the trees, the outside world.  The view matters.   As the sun rises above the trees and I finish my morning devotional time I feel a gratitude that can't be measured.  For just a week shy of an entire year our family, community and the world at large has supported us in prayer, meals, love, monetarily, and in more ways than I even know.  This cancer life has become routine for us in many ways.  My kids have been forced to grow up a little faster, their lens is so different now than it was a year ago.  Jesse and I have changed, struggled, leaned on each other, our friends, and mostly God and we are carried on and on and on.  I have seen the darkness as fear and anxiety has threatened to overtake hope but always there's the light, the Light, the Light of the World.  

As I continue to work through "The Way of the Cross" (as mentioned in previous posts) I came upon that dreadful time when the Blessed Virgin Mary sat at the foot of the cross.  I read this line again and again as it was so relatable for a mother with a sick child: "there is nothing that she can do to alleviate His suffering.  She is content to suffer with Him; His passion is hers."  I cannot change this situation.  Sometimes I see myself turning the chemo off, packing her up and getting her out of here.  But if I did that she would suffer more in many ways (if not in the short term definitely in the long term).  I can only sit here and bear a tiny portion of the weight with her.  And then there are the children at home who are also suffering in different ways.  The heavier load on the teens/young adults.  The bedtimes without "mama" for the littles.  Then there are thee ones who no longer live at home who carry burdens of their own.  I can only try to enter in with them, sit with them, pray with and for them.  I picture Mary at the foot of the cross broken hearted but clinging to the truth that she has known all her life.  God will redeem it all.  God will make a way.  

I am headed off to toss my clothes in the dryer and for my morning walk.  Cecilia will have continuous chemo until Saturday night and if all is well (please pray all is well) can come home later on Sunday.  The week after that, really the first ten days after, tends to be up and down and involves plenty more hospital time (though usually outpatient thankfully).  Our lives have been stripped down to mostly necessities only and we continue to come together as a family to love each other, support each other, and ensure that Cecilia is well cared for and feels so much love.  Thank you all for your part in this.  

The sun is nearly up over the trees now.  The arb is calling me.  Thank you for sharing our journey with us.

Each year we take a picture of Mary, Cecilia and Clare before Mary's birthday to show them when their ages are in succesion.  Here they are at a dance last weekend.  Ages 15, 16, and 17.  

Be Strong and Courageous

 "Be strong and courageous, do not be afraid or discouraged, for the Lord your God will be with you wherever you go."  Joshua 1:9

The past week has brought a couple of long days at the hospital getting tests and infusions and transfusions.  Calls and chats with doctors, NP's, and so much prayer.  Cecilia transitioned from the hospital to home with 40 plus pills to take everyday.  She is now down to 20 something with the hopes of reducing those even further after today's labs.  We are in a holding pattern.  Circling around and around waiting for a significant change, a sign, a miracle.  

As I cried out to God a few mornings ago I looked up to see the giant message that hangs on our wall above my prayer space.  Joshua 1:9.  I felt convicted inside as I am, every day, afraid and discouraged.  I wonder how I have not allowed those words to take root in my heart yet.  Like the father of the child possessed by a demon in Mark 9:24 I prayed in my heart "Lord I believe help my unbelief."  As time passes and what once never took up even a sliver of space in our minds, a child with cancer, becomes the main focus of each of the members of our family I have traveled dark places in my heart and mind.  I have had to fight to cling to the Faith that I hold dear.  For years I have proclaimed the goodness of God and this past year I have learned in a very concrete way that the goodness part does not always present as "good".  

On this freezing cold morning as I drink my coffee and finish. up my morning devotions hoping for week 2 of a full school week for my kids I am once again filled with gratitude for a God who is always with us.  Even and especially in the dark places, the hard places, the lonely places.  He is with us in spirit, of course, but also in the faces, words, love, and support of others.  Watching my child suffer, struggle, and seemingly waste away at times has re ordered every part of my life but one.  God was first in our lives before this started and remains so even in the trials.  

I am not strong or courageous, I am often discouraged and afraid, but the Lord my God IS with me wherever I go.  Even cancer can't change that.

Cecilia's upcoming treatment plan is :

Labs and possible transfusions today and probably one other day this week.

Kidney function test 1/28 early morning with a planned admission/chemo (if kidneys can handle it) on that same day.

Certainly many labs and transfusions/infusions in early February with scans to follow (no date set yet) the week after that.

Please continue to pray for us and know that each and everyday we are praying for you all.  I cherish the intentions that you send to me and pray for all of the intentions spoken and unspoken.

Jesse has recovered well from pneumonia and his hospital stay, praise Jesus.  

Please keep Katie in your prayers as she travels to DC this week for the March for Life.  Her work protecting life from conception to natural death is inspiring in every way.

When Lord?

 Cecilia is still in the hospital.  Her electrolytes were unstable but I think she may come home today.  She is in need of platelets but there is a shortage so they are sending her home anyway and we will return to outpatient infusion tomorrow and get platelets.  This is day 11 in the hospital for her.  The longest stay yet.  Gratefully the flu left her mostly unscathed.  Everyone here is recovering and life may just return to "normal" for a short while before the next chemo admission.  

As we approach 12 full months on this journey and having cancer, hospital life, and upheaval a regular part of our lives we have learned how to make the best of the time we have together.

In the midst of the flu when everyone here was deathly ill and I looked forward to the end of that it dawned on me that after the flu was still cancer.  When Lord will this end?  I revamped my homeschool curriculum as the one I planned for the fall was for the end of chemo times.  

The abundance of blessings, prayers, support and grace continue to flow and for that I am eternally grateful.  

Our next few weeks look like this :

Infusions and lab work all through this week and next.  

Admission 1/28 for another five days of chemo

Scans following that admin (date TBD)

Updates Again

 Good morning friends - Jesse will be discharged from the hospital today.  I haven't seen him but he sounds ok - better than before at least.

Cecilia has tested positive for the flu and will remain in the hospital.   I have not been told what the plan is there.  Jackson has been with her since Saturday.

As you can imagine this is a very scary and heavy time for all of us.  Thank you for your prayers.

Trilocating {More Hospital Updates}

 My heart is so divided.  I am needed at home, with Cecilia, and with Jesse.  Jesse was admitted to the hospital yesterday (but is still in the ER ICU waiting for his room).  Most of the kids here are slowly recovering but still not feeling great.  Jackson flew in Saturday and basically went straight tot he hospital to be with Cecilia and has been there ever since.  Jesse is still on oxygen and will hopefully move to his regular room soon.  Cecilia will continue her continuous drip of chemo through tomorrow around 5 pm.  I believe she will be in the hospital until Wednesday which should have everyone here totally on the mend but if not we have a plan B for where she will stay.   Jesse will also be in the hospital until at least Wednesday.  

Three gratitudes :

That Cecilia and Jesse are in the same hospital!  The care is good, the caregivers loving and trustworthy allowing me to feel peaceful when I can't be there with them.

For overwhelming support from our family and community.  We have been dealing with this for nearly a year and the support hasn't wavered.  The prayers have kept us upright and able to move forward.  Prayer is POWERFUL.  Prayer doesn't necessarily change the circumstances or the outcomes but it gives grace for each moment and that is invaluable.

Modern technology that allows me to get real time updates via the UM App to see lab results, doctor and nurses notes, etc.  A lifesaver since triloaction doesn't seem to be a real thing as of yet.

I am one million messages behind but read and am grateful for them all!  THANK YOU!  This morning's Liturgy of the Hours contains a favorite Psalm of mine.  I'll close with that.  As we walk this road we are continuing to keep you all in our prayers.  

Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation and my God.

Psalm 42:5

Family Flu Update

 Thank you all for prayers and offerings of support and help.  As it is everyone at home except me is pretty sick.  The Lord has spared me of what appears to be a vicious flu, thankfully.  Most importantly Cecilia is not sick and will receive day 3 of her continuous 5 day chemotherapy treatment today.  This nasty bug should be well out of the house before she comes home next week.  Katie and Joe have been taking turns at the hospital so I can be at home taking care of the people here.  The feeling of needing to be in two places caring for children is heart wrenching and has me calling on Jesus for guidance and wisdom every minute of the day.  

Cecilia sleeps most of the time on this chemo - 22/24 hours or so it seems.  Being here with the kids and Jesse for now seems like the wisest choice.  Please continue to pray for us.  The kids have been checked out and it seems it all just needs to run its course.

2025 has sure started with a "bang" so to speak.... Please continue to pray for us as we pray for you.

Prayer Requests/Returning for Chemotherapy Today

 Today Cecilia and I return to the hospital to begin her next cycle of Chemotherapy.  The doctors have tweaked it to hopefully reduce the risk of plummeting blood pressures.   This will require a longer stay but in the end seems like the best choice.

The thing about long term "crisis mode" is that it doesn't make us immune to the other trials of life.  Jesse and Jude both have the flu right now.  I have spent the last couple of days trying to take care of them without getting too close, praying that I will not get sick, praying that no one else will get sick and doing my normal preparations for being gone for the next many days.  

I am here asking for prayers that Jesse recovers quickly!  Since his partial lung removal several years ago when he gets respiratory illnesses they hit hard typically ending with pneumonia.   Adding to that his type 1 diabetes and epilepsy it's a tricky balance and without me here to monitor I'm a little anxious.  

Please pray for the other children that they stay healthy.  Please pray for me that I stay healthy and can be with Cecilia.  So far I feel great and have taken many precautions plus supplements so it think I will be OK but we need the prayers!

Of course please pray for Cecilia as she continues this chemotherapy and other treatments in the hopes of eradicating this cancer!  

As 2025 begins we are begging for the graces of new HOPE, endurance, perseverance, trust and understanding.  

Thank you for praying with and for us.  For the meals, financial support which has enabled me to step back from working so many hours and has allowed me to be Cecilia's primary caregiver.  It is humbling to receive so much that I know I can never repay.  I am journeying through The Way of the Cross by Caryll Houselander.  Today I read about the dependence that Christ had on others.  Especially in the midst of persecution, trials, and tribulations.  His example is meant to be emulated by us when we are in need.  I am desperate for this reminder on a daily basis.

May the new year bring with it blessings and peace for all of you!

After this week of chemo we have transfusions set up for January 9 and the following week if needed.  Return chemo inpatient time will be 1/28/25 with scans the following week to track progress.