Friday, November 9, 2018

Difficult Week

Caroline has struggled to recover this week from Round 1 of inpatient Immunotherapy, and has been back and forth to Vanderbilt for fever and check-ups 3 times since discharge on Saturday.  The fever, lack of appetite, and stomach pain symptoms are mostly likely side effects from the latest treatment, but we are awaiting test results that will show if she is also suffering from a stomach virus (which is apparently going around the hospital).  She certainly isn't her normal, energetic self right now, and has lost a few pounds over the last few weeks, but we are hoping she is starting to turn the corner.

We were told by our nurse case manager today that the treatment protocol for High-Risk Neuroblastoma is by far one of the hardest on both the patient and the family, and we can certainly attest to that!  We are approaching the one year mark of Caroline's diagnosis, and our whole family is just mentally and physically exhausted; honestly, we are very "over" this process.  But, we won't quit, we won't slow down, and we will continue to remind ourselves that this schedule and strain on our family is temporary.  If Caroline can endure the actual treatment, we can certainly keep forging ahead at full-steam...even on the days we feel like we have nothing left.

As of now, we are scheduled to go back into the hospital for Round 2 of inpatient Immunotherapy on Monday, 11/19.  We will be in the hospital for Thanksgiving week, and will likely be there for 12-14 nights, with a possible 1-2 day break in the middle (but based on Caroline's recovery from this first round, we aren't counting on the break).

The pictures we decided to share this week show part of her current daily/weekly routine, which includes: many oral doses of liquid medication, a shot in her arm, double-lumen Hickman line flushes, a sterile central line dressing and clave changes, and most challenging of all, 4 oral pills she has to swallow (which can take her 1-2 hours per day to get down!!!). Caroline has been a super-strong trooper over the last year, but it's apparent that even she, too, is getting tired of this grueling routine.  She misses her friends, and wants to be a normal kid doing "normal" kid things; she's starting to notice what she's "missing out on" more and more.

We would like to say THANK YOU to all of our friends and family that have stuck with us throughout.  We are aware that everyone has their own lives, and problems to deal with, so we appreciate that continued outreach and support!  Much love!!!

The Lantz Family
#carolinestrong
#ftgf



8 comments:

  1. I am so sorry Caroline is feeling bad and I just lift her up in prayer. You all are amazing parents and I thank you for always giving updates. God Bless you all and give you the rest you need each day to care for your Sweet Caroline.

    ReplyDelete
  2. I'm sorry to learn that this week was rough going. I pray that Caroline feels better for the upcoming week before her next round of immunotherapy. I'm sorry that Thanksgiving is going to be spent at Vanderbilt, but hopeful that the hospital will help to make the day as special as possible. There are so many in the field of medicine & public service who work through all the holidays, helping others in their time of need. Continued prayers to your family!

    ReplyDelete
  3. So appreciate your words. Praying you can be weak so Good can be strong for you. You are fighting the fight so bravely and so well. much love and prayers sent your way daily

    ReplyDelete
  4. Thank you for keeping us up-to-date it really helps to know how to pray specifically for Caroline and your family. Words cannot express our deep desire that God will carry you through this extremely difficult process and the results will be Caroline‘s healing in Jesus name.

    ReplyDelete
  5. Caroline is in our daily prayers. I hope things improve for her soon. If there’s anything we can do to lift her spirits please let us know. Care packages from Panera if she has any appetite are definitely available. Love and strength and peace to all of your astounding family.

    ReplyDelete
  6. This comment has been removed by the author.

    ReplyDelete
  7. Aubree and I are praying daily for Caroline and family! ❤️

    ReplyDelete
  8. I went to school with Cathy Manley. I just wanted to lift you in prayer and also to tell you of our experience with childhood cancer...to hopefully show you the light at the end of the tunnel. In 2014, My stepson was diagnosed with Ph+ All, the very agressive form of ALL that gave him a 33% chance of survival. After a failed bone marrow transplant in December of 2014, we battled the chemo, infections, numerous ICU admissions, more than i want to remember of the "is he going to pull through this". Then he had the immunotherapy in Nov 2016. He has been cancer free since then. He is going to college and is now a pharmacy technician. They say 5 years till we can say "cancer free" but he never even got a 12 month remission in the past so we are very hopeful and he is living a NORMAL 22 year olds life now. Stay strong and keep the faith...it's a long road

    ReplyDelete