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May 05-11

This Week

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EIGHTEEN MONTHS ... FIVE HUNDRED AND SIXTY FIVE DAYS since Cale received Max's bone marrow and has been considered disease free!  What a blessing!  Yesterday I went to Cale's 18 month post transplant check up with his oncologist.  His weight was good, his blood pressure was good, his labs were all good ... yet, our anxiety was high as always.  As the days between his transplant on October 5, 2022 and now grow, we watch Cale push through his days with determination and grace like a true survivor. 

Dr. K completed her exam and said how happy she was that he is doing well and soon to finish his junior year of college ... what a feat for someone who has been through what he has.  After all the check lists of questions, we discussed next steps for Cale.  He will continue to meet with his oncology staff every 3 months for labs and a physical exam.   Dr K stated that he in fact is done with the recommended PET scans due to his 1 yr scan being clear.  We discussed if Cale were to have any HL symptoms like rash, lumps, unexplained weigh loss or night sweats that we should reach out and a scan may be done then.  I of course addressed the fear behind Cale and my face after that discussion.  Cale never had symptoms ... he never had swollen lymph nodes or odd rash that so many HL patients have when presenting for diagnosis.  Cale had a 5 inch mass in his chest that was only found because of his cough ... which was pressing on his trachea.  Dr K was so great.  She understands our PTSD with all that has happened through Cale's diagnosis and multiple treatments.  She agreed to a CT at his two year mark as this will be less radiation as well as a better chance insurance may approve this over a PET scan.    Cale and I left the appointment happy that his exam went well, but honestly, the underlying feel was all the what if's ... what if all the poisonous chemo he has had will damage his heart or liver down the road ... what if his bone start to weaken because of all the trauma his body has had ... what if the radiation he received will cause a new cancer to appear ....  STOP!   

I hugged Cale and reminded him we cannot go down the WHAT IF road!  We need to enjoy the gift of today and be so very grateful for the life he has now, free of lymphoma!   I'm certain this is an constant battle to stay away from that spiral for many in remission from disease.  We are blessed to have such a faith and trust in God to find relief from these moments of weakness.    So, for today we continue to celebrate a happy and healthy Cale.  Well, happy may be a stretch  ... Cale is prepping for finals that start next week and working a TON on the final touches with the Baja Buggy team before they head to their competition in Pennsylvania in 3 weeks.  He is certainly feeling the pressure of the end of the semester.  So, after taking him to fill his belly and giving him a handful of extra hugs, I sent him and his girlfriend on their way to be amazing!  

One last side note --- a few weekends ago Joe and I took part in a community wide scavenger hunt to support Central WI Gift of Life (https://www.centralwisconsingiftoflife.org/) supporting organ and tissue donation.  What a fun day supporting an amazing cause.  There are so many people waiting for a donation to give them more precious days, months and years with their loved ones.  There are so many families who have made difficult decisions to donate on behalf of a loved one.  We know Cale  needed Max's donation to be the happy young man he is today.  So as a reminder, if you are able and willing, consider being an organ or tissue donor.  What a selfless act of compassion and generosity.

Here is the link to get more information on being an organ donor:  https://www.dhs.wisconsin.gov/

And, the link to National Marrow Donor program, formerly known as Be the Match:  https://bethematch.org/

Be well dear prayer warriors.  Thank you for all your prayers for Cale and his well being.  

 

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