Our life has been a whirlwind
since our baby boy was diagnosed with CML (Chronic myeloid leukemia) AND ALL (acute lymphoblastic leukemia) on a routine lab test during his physical exam for freshman year in high school 7/20/22.
We have another child 17 who is learning how to drive, navigate life and rows in varsity crew. We are so grateful for the help of Kyle P. & the other amazing families helping us get our son to his practices. The meal train, go fund me & family fun day fundraiser by Sarah Clifford (and many others including Tiffany from Center Stage Dance academy...where Tristan has danced for 5 years...) have been and continue to be so helpful.
We are awaiting Tristans bone marrow transplant (aka stem cell transplant) at the end of October. Tristan has had a few bumps in the road… a kidney stone 2 weeks ago …requiring admission to Boston Childrens Hospital….it was what we thought to be the most painful thing he'd experience... but unfortunately we were wrong. Monday 10/10/22 we had to call 911 as Tristan developed unbearable severe back & leg pain. Our neighbors had to watch as the paramedics carried my son out in his pumpkin PJs. A huge shout out to the Duxbury paramedics who brought him right to Boston Childrens Hospital…after appeasing this NP mom by treating his pain.
As a mom & Nurse Practitioner with 23 years experience...I wanted as every time before... to jump in that ambulance and be with my son.......But....my husband who is currently the primary FT child caregiver ..I had to trust that he would do as a good job as me/mom... went......as I had to work the next day... and yes... people who live in Duxbury need to work. As hard as our situation is, I'm the sole bread winner so there it is. My husband was VP of a large company for many years....and miserable.
So he is VP of our family....and doing an AMAZING job. It is hard for us as moms to let go.
Matt (hubby) has risen to the challenge of taking care of our sons so I can support our family and has brought a positive light on modern day marriage.
Tristans work up (MRI) initially supposedly showed fluid around Tristans spinal cord which was worrisome for a slow leak or infection. His presentation met NONE of these. Repeat MRI showed no fluid collection. Soo..24 h later we are being told his 10/10 EXCRUCIATING pain was from steriod withdrawal....???????I've never seen this manifested this way... but I'm happy to accept a less serious diagnosis. We are hopeful to bring him home 10/12. My great friend who owns A plus coach is sending a car service to pick up Tristan & Matt. It's mind boggling managing work, a sick child, a healthy child who has a million sport activities... 2 obnoxious fubabies... a cat... 6 chickens....oh and taking care of ourselves.
So folks....in marriage/life......It's not just about sex, self satisfaction folks....it's about caring & connections. We have been married 19 years. We can't spend this upcoming business trip to Mexico together (which was planned over 2 years ago) , but I'm going & bringing NP Lindsay. Get a little mental health reset for our next battle to come....I plan to send Matt & my older son somewhere using my miles on school vacation break. Us taking a trip during our sons illness doesn't make us bad parents.... On the contrary... selfcare & a relaxing trip will make us better parents & people. If we don't care of ourselves we aren't good to anyone else. So those who want to judge may not want to follow our page. ✌🏻✌🏻✌🏻✌🏻