A person’s a person,
no matter how small”
– Dr Seuss
Today, October 15, 2019, we pause to remember the stars of our soul that were extinguished far too early.
To the parents who are missing their babies today and always, The Band sends our love and prayers.
To our babies, the babies who never got to experience the joys of Earth, whose lives were cut very short, we miss you.
We miss you. More than anyone can ever know. We wish we could have one more moment – one single moment – with you, as we can’t have a lifetime.
Today, we honor the short lives of some of the brightest souls, souls that have touched many and have taught us to cherish all of life’s moments.
To our babies who we carry in our hearts, instead of our arms, we will never forget you.
Band Back Together’s Wall of Remembrance:
- Mary Katerina, miscarriage March 13, 2008.
- September 23, 2010, miscarriage.
Amanda and John’s Babies:
- Juliana, July 2008, miscarriage.
- Charlie, November 2009, miscarriage.
- Samantha, March 2010, miscarriage.
- Her 3 Littles, December 23, 2010, missed miscarriage/June 2011, miscarriage/December 6, 2011, Autosomal Recessive Polycysitic Kidney Disease
Another Becky’s Baby:
- Baby Savu, August 2004 missed miscarriage between 3rd and 4th month.
- Baby Garrett, September 13 2012, Miscarriage
Aunt Becky’s Babies:
- February, 2008, Baby 1, miscarriage.
- March, 2008, Baby 2, miscarriage.
- August 2017 ,Tuesday, miscarriage
- February 15, 2000, miscarriage.
- Pregnant October 2011, unpregnant January 2012, ectopic pregnancy.
- July 15, 2008, miscarriage.
- June 13, 2005, miscarriage.
Baby Noah Walter
- January 2012, miscarriage.
- Malcolm, January 2008, miscarriage.
- Ophelia, April 2009, miscarriage.
- Caden, miscarriage, May 1989.
- Aubrey, miscarriage, December 1993.
- Kaycie, miscarriage, 6/14/2011.
- Baby Jones #1, February 2007, miscarriage at 12 weeks due to blighted ovum (Empty Gestational Sac).
- Michelle, November 1991, miscarriage
- 2 babies, miscarried in 1994 and 1999.
Elsie’s Ten Possibilities:
- Nine Embies, 2008
- Lola, 2011
- Baby 1, September 2006, miscarriage.
- Baby 2, January 2007, miscarriage.
- Baby Girl 1, December 2008, late miscarriage.
- Baby Girl 2, August 17, 2009, born still at 18 weeks.
- March 2005, miscarriage at 13 weeks.
- Biscuit, July 18, 2012, miscarriage.
- Unnamed baby, 6w1d, September 18, 2010, miscarriage.
- Unnamed baby, 6w2d, June 22, 2011, miscarriage.
- Unnamed baby, 5w, August 15, 2011, miscarriage.
- Pregnant in December, 2007. Unpregnant by February, 2008.
- Forget Me Not #1, February 2009, miscarriage.
- Forget Me Not #2, January 2012, miscarriage.
- Baby M, September 10, 2011, miscarriage.
- Stella, February 13, 2011, miscarriage.
- June 8, 2008, early miscarriage.
- November 2007, early miscarriage
- November 2011, early miscarriage
Justine and Boo’s Baby:
Kallay and Ryan’s Baby:
- Baby C lost to a partial miscarriage, May 17, 2010. Baby C is survived by twin sisters, Lily and Molly who were born on December 7, 2010.
- Mari Elizabeth, September 2003, miscarriage
- Noah Douglas, October 2004, miscarriage.
- Twin Angels, July 2006, miscarriages.
- Rebecca, June 3, 1995, miscarriage.
- Baby Sluiter A, April 2007, miscarriage.
- Baby Sluiter B, May 2008, miscarriage.
- Baby 1, September 2009, miscarriage.
- Baby 2, May 2010, miscarriage.
- Lola, October 9, 2012, miscarriage.
Kelly and Brad’s daughter:
- Lily Catherine, February 18, 2010, miscarriage.
- Baby 1, April 2003, miscarriage.
- Baby 2, October 2004, miscarriage.
- Baby 3, February 2006, miscarriage.
Kendra Pocock’s Baby:
- Baby JJ Pocock, July 13 2012, Miscarriage/Ectopic Pregnancy
- Baby, October 1996, miscarriage.
- Baby One, son late term miscarriage at 15 weeks.
- Baby Two, second-trimester miscarriage at 14 weeks.
- Baby Three: miscarriage, 11 weeks.
- Baby Four: miscarriage, 13 weeks
- Baby Five, late miscarriage, 16 weeks.
- Eva, miscarriage
- 7 other babies lost through miscarriage due to luteal phase disorder and clotting disorder.
L. Moses’ Baby:
- Baby Moses, July 17, 2008, ectopic pregnancy
Lara and Brandon’s Son:
Lauren C’s Angels:
- Baby, August 27, 2007, miscarriage.
- Baby Boy, January 13, 2011, miscarriage.
- Baby May 9, 2011, miscarriage.
- Cameron, born and died May 22, 2009 at 10 weeks.
- Jeremiah Oliver and Jillian Olivia, twin babies. Second trimester loss July 9, 2010 and July 14, 2010 respectively.
- July 1994, ectopic pregnancy resulting in emergency surgery.
- Natasha Anastasia, September 7, 2011, miscarriage.
- Baby B #3, September 1, 2011, miscarriage at 5 weeks.
Marlowe Corrine, September 19, 2006, early miscarriage.
- June 11, 2011, miscarriage
- Baby Angel, February 8, 1998, blighted ovum/miscarriage
- Albert Eugene, October 31, 2000, miscarriage
Mindy’s Three Angels:
- Angel One, September 9, 2005, miscarriage.
- Angel Two, July 17, 2007, miscarriage.
- Angel Three, September 25, 2010, miscarriage.
- Peanut, August 7, 2011, miscarriage.
- Baby One, February 2, 2011, miscarriage.
- Hosanna Joy, June 18, 2011, early miscarriage.
- Cody Ryan-Price Grodan, February 14, 2012, miscarriage, 12 weeks.
Nicole and Jake’s baby:
- Baby One, September 19, 2011, miscarriage.
Rachel and Jesse:
- Babies due Aug 2008 and November 2010. Both lost to miscarriage.
- Alivia Mason, March 21, 2012, miscarriage.
- First Angel April, 2013, miscarriage
- Second Angel July 2013 miscarriage
- Isaac Ephraim, miscarriage August 2006.
- Isaiah Jeremiah, miscarriage January 2007.
- Ella Alicea, ectopic pregnancy June 2009.
- September 2006, miscarriage.
- April 12, 2002, miscarriage.
- September 3, 2008, miscarriage.
- Baby Bun Bun, April 2017, miscarriage
- Baby #3, June 2000, miscarriage from a blighted ovum.
- Athena Rose Moore, Girl Twin B
- Grace, 10/29/2001, miscarriage
- October 1990, miscarriage.
- September, 2002, miscarriage
- July 17, miscarriage
- September 25. miscarriages.
- 2008, Little Soul 1, 2008, ectopic pregnancy.
- 2009, Little Soul 2, 2009, ectopic pregnancy.
- Sean Michael, April 14, 1987, miscarriage.
- Nolan “Shepherd,” stillborn at 17 weeks on September 15, 2009.
- Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
- Orion, stillborn May 8, 2004
- Benjamin, September 4, 2012, stillbirth.
- Bella Rose, stillborn on September 9, 2009.
- Emerson Allen Behrends, July 10, 2001, stillborn.
- Jonathan Edward, June 4, 1992, stillborn.
Debbie And Jeff’s Daughter:
- Chloe Eva, September 12, 2008, stillbirth.
Heather and David’s Daughter:
- Clara Edith, July 1, 2012, Stillbirth at 42 weeks, 3 days due to meconium aspiration and uterine infection.
Jill and Mark’s Baby:
- Haven, November 26, 2003, stillborn at 38 weeks gestation
- Ruth, January 3, 2013, stillbirth
- Cullen Liam, born still September 11, 2010.
Lilla and Gareth’s daughter:
- Pippa, born still on February 13, 2011 from listeria infection.
- Stillborn, born still 2017
- Kaitlyn Grace, stillborn, born still, May 13, 1995.
Louise and Joseph’s Baby:
- Alice Mathelin, born still on February 25, 2011, at 36 weeks and 5 days from Abruptio Placentae
Martha’s Twin Boys:
- Owen died March 8, 2008 because his cord wasn’t properly attached to the placenta.
- Joshua died one month later, April 6, 2008 because he couldn’t live without his brother. Both were born still on April 8, 2008.
- Summer Lily, born still March 30, 2011.
- Jordan Ala, stillborn on November 13, 2006.
- Nicholas Aaron and Nathan Alexander, June 9, 2000, stillbirth
- Sam, 1997, intrauterine fetal demise
- Audrey Elizabeth, August 7, 1998, born still.
Selah Mae: born January 22, 2002, stillborn.
- Carter Austin Ross, March 18, 2006, stillbirth due to an umbilical cord anomaly.
- Isabella-Rose Elizabeth, October 12, 2009, stillbirth.
Amy and James’s Babies:
- Jacob Bennett born and died on July 11, 2007 due to premature rupture of membranes (PROM).
- Samantha Lauren born August 16, 2011 at 23.5 weeks passed away September 17th due to extreme prematurity and fungal meningitis.
Baby Helen: Born July, 1993. Passed from prematurity.
- Christopher Robin Cote: Born September 25, 2009. Stillborn due to premature rupture of membranes and incompetent cervix.
- Emily, prematurity born 19w 5 days – was too small for the equipment.
- Jellybean, born at 5:20 April 15th, 2009; and passed just four short hours later in her arms.
Heather and Aaron’s Son:
- Aodin R. Hurd, October 7, 2007, born still due to premature rupture of the membranes.
- Kevin William, prematurity, 2005
- Baby S, March 2008, Miscarriage
- Evie, December 14, 2009, Triplet Prematurity
- Jack, December 22, 2009, Triplet Stillbirth due to Prematurity
- Will, January 13, 2010, Triplet Prematurity
- Baby M, May 2010, Miscarriage
Kristin’s Baby (Mama KK):
- Ariel Grace, born on July 28, 2009 at 18 weeks 5 days. Lived 5 minutes.
- Ayla and Juliet, October 20, 2009 at 20 weeks.
- Bayli and Thomas on June 8, 2011 at 21 weeks 2 days.
Matthew Chase Sims:
- April 25th, 2006 due to prematurity.
- Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
- Samuel, August 8, 2001, prematurity.
- Coleman Parker Garibay, September 14, 2005, lost at 6 months gestation and passed from prematurity.
- Reya, September 18 2011, Prematurity due to extreme Pre-eclempsia
- Mikel Azariah and Willamina Azaria born August 12, 2019.
- Mikel was stillborn,
- Willamina was premature at 22 weeks 6 days
S & T’s Son:
- William, November 2, 2013, 24 weeks, 3 days, prematurity
Collin, complications from prematurity, 2009
- Erik Richard, July 29, 1981, prematurity.
Aaron and Kristine’s Son:
- Luke Ervin Seitz, born July 21, 2011 with Hypoplastic Left Heart Syndrome, and passed on June 28, 2011.
- Mateo, Anthony, and Ian born on May 6, 2008 at 23 weeks and 3 days.
- Mateo was born still.
- Anthony passed away from Transposition of the Great Vessels.
- Ian passed away after a short stay in the NICU.
- Nathaniel James, August 24, 2001 – August 29, 2001, Citrullinemia
- David Henry, May 11, 2010 – January 24, 2011, Citrullinemia, passed away after becoming sick post liver transplant
Baby Khalil, born August 14, 2009, stillborn, born still from birth defects.
- Kyle William Kober July 22, 1994 due to Hypoplastic left ventricle syndrome
- Ethan Connor Brockwell, May 3, 2006 – August 17, 2006. Born with Hypoplastic Left Heart Syndrome.
Christopher: November 4, 1979, due to pulmonary atresia, a congenital heart defect.
- Aidan, born with brain malformation on December 16, 2008 and passed on December 19, 2008.
Cora Mae McCormick:
- November 30, 2009 to December 6, 2009 from a congenital heart defect.
- Shane Michael, born October 10, 1971 and died October 11, 1971 from heart complications before his mother could wake from anesthesia. She never saw or held him.
- Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
- Seth Douglas Bonnett, Our Little “Tough guy”, March 27, 2008 – October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
- Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
- Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
- Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple congenital heart defects and heterotaxy.
- Starbaby, born still February 2008 due to Trisomy 18.
- Matthew Connor – February 26, 2005, born at 26 weeks, passed from Necrotizing Enterocolitis (NEC).
- Reed Allyvion Miners, passed away July 5th 2003 at one hour old from Primary Myocardial Disease, a congenital heart defect.
- Nathaniel, born August 24, 2001 and died August 29, 2001 from an undiagnosed metabolic disorder.
- David, born May 11, 2010 and Died January 24, 2011 from a myriad of complications resulting from a liver transplant.
- Leia Sky Williams, born October 6, 2011, passed away from Group Beta Strep.
Baby Kash Michael:
- Born June 3, 2011 and died September 28, 2011.
Carey’s Triplet Sons:
- Rudyard, Desmond, and Oscar, June 4th, 2011, born at 22 weeks due to of E. coli infection.
- Nicholas and Zachary, October 27th, 2004.
Heather and Joe’s Twins:
- Jonathan Michael and Samuel Joseph, identical twins born alive and died on May 6, 2004 from extreme prematurity and twin-to-twin transfusion.
- Charlie: Born May 21, 2003 and died June 14, 2003 from late-onset Group B Strep.
- Will, born (today) October 15, 2002 and died on September 16, 2003 from complications of late-onset Group B Strep.
- Malakai Zachary born still March 10, 2007 due to Anencephaly.
- Five more angels, July, 2007 – May, 2010. Miscarriages.
- Catherine Grace, born August 10, 2012, passed August 12, 2012, due to prematurity brought on by HELLP syndrome.
- Kaitlyn Grace, born sleeping at 38 weeks on Saturday, May 13th, 1995. Died from a true knot in her umbilical cord.
Matt and Lauren’s Baby:
- Isla, born 14 weeks premature on August 23, 2011 and died on October 10, 2011.
- Mina Kathryn, born February 18, 2009, died February 24, 2009, due to complications with her PICC line.
- Baby R, May 24, 1998, Medicine Administration by RN who didn’t know or ask.
- Matthew Conner Webb, born January 11, 2005 and died February 26, 2005. He was born at 26 weeks and faced many obstacles in his short life.
- Ziggy Ann born sleeping on January 21, 2009.
- Frank born sleeping May 21, 2010.
- Liberty Ann born March 30, 2011 and died on April 19, 2011.
Ally’s Son: Collin
- Collin: born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
- Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
- Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
- Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
- Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
- Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
- Addison Leah, June 13, 2008, accidental death.
Jessica and Mark’s Daughter:
- Hadley Jane, born October 9, 2001 and died October 11, 2007.
- Halsey Douglas Dukes December 31, 2016, Halsey passed from hemophaygocytic lymphohistiocytosis (HLH)
- Halcyon Grayson Dukes was born September 1, 2011 Halcyon failed to develop after 9 weeks
- Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops.
- Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias – SIUDS (unexplained sudden infant death)
- Cullen, September 11, 2010, stillbirth.
- Brian Vitale, accidental death, September 4, 2007 – June 3, 2010. We miss him more and more each day.
- Patrick, born April 10, 1977, Adoption
- Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Rebecca and TJ’s son:
- Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
The Stamm’s Daughter:
- Adrienne Mae, May 7, 2006, Sudden Infant Death Syndrome.
- Nathan Michael King, died from SIDS November 2008.
- Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
Chance, July 25, 2014, homicide
On October 15, 2019, we will be publishing a Wall of Remembrance for those among us who have lost our babies far too soon.
You are invited to share the names of your lost babies here.
I have had 10 miscarriages – just saying that is hard for me
For so long I have tried to sweep it under the rug – once my number became larger then three I became numb to it all. I’m not really an emotional person, but this topic always brings up memories as if it all happened yesterday.
I have been through 10 miscarriages in 6 years.
I am 28 years old – I have been pregnant 13 times – and have 3 living children.
I can be a very private person, but I think miscarriage and infertility have enough secrecy surrounding it that I do not want to perpetuate it. The more it is talked about – the more women and families can feel supported and listened to and important – not embarrassed and ashamed like I am struggling to not feel. I am opening up the door to talk about it – so here is my long story:
My first two miscarriages were kind of a blur to me. We were not trying to get pregnant and basically found out we were expecting the same time we realized we were miscarrying. I had always heard that having one miscarriage was ‘normal’ and so I honestly didn’t put too much thought into it. They were still very painful and devastating to me but I thought once we were actively trying everything would be OK – that no one would have more then 2.
My husband and I decided to start trying for a family and we actively began trying to conceive using basal body temping as a guide. We became pregnant again in November 2004 after the first month of trying. I was about 6 weeks pregnant just around Christmas when I miscarried (#3). This time it hit me – hard. I mean I have never heard of someone who has had 3 miscarriages ever – let alone in a row.
|Basal Body Temperature Chart using Fertility Friend
I began feverishly doing my research.
With my basal body charts I had noticed that my luteal phase was under 10 days (according to research the shortest it should be for a successful pregnancy) so I began to take vitamins B6 and B12 to lengthen it. I went to the doctor and his thought was that my progesterone was low and that is why I was not able to hold on to the pregnancy past 6 weeks. So a new plan evolved. I would stay on the vitamins and go on a progesterone supplement the moment I found out I was pregnant. This made the basal body temping so important – I needed to know the exact date.
We began another month of trying to conceive (TTC). Thermometer in hand and a plan in mind we became pregnant again in June and I was on the progesterone medication. The plan was to stay on until 12 weeks pregnant and then to slowly wean myself off. When 12 weeks came along we lowered the dose of progesterone but I began to bleed so we quickly went back onto the medication. The baby was doing fine and the new plan was to wean off at 20 weeks. 20 weeks came and I was successfully weaned off with no further complications. I had my first full term baby (Big P) in December 2005 – a healthy boy.
|Big P – 8lbs 1oz
My husband and I had always wanted to have our kids close in age, so we starting TTC again relatively quickly. I began the basal body temping again and got pregnant pretty quickly. When I got the positive I went to the doctor to get a prescription for the progesterone and started taking it again. I miscarried #4 shortly after 7 weeks. My doctor and I both thought it was because the progesterone was not started soon enough so I was given a prescription for the next time to begin the day I had a positive test. I got pregnant again and started the progesterone but miscarried #5 at 6 weeks 5 days and I was starting to lose hope. I went back on the vitamins and we began TTC again. Thinking back it probably would have been better to give myself a few months to heal physically and emotionally but I was determined and had the okay from my doctor.
In July 2006 we got pregnant again and everything was going smoothly. I was on the progesterone and we had an ultrasound that showed the heartbeat and the baby was growing. I was on bed rest again for the first 20 weeks and was weaned off the progesterone at 20 weeks. Everything was going smoothly. At 8 months pregnant I awoke with vertigo – fell and cracked my wrist. I was taken to the hospital and without going into too much detail I was diagnosed with possible stroke and they ran a large amount of tests and I was hospitalized.
In one of those tests they discovered I had a blood disorder called Factor V Leiden. Everything was going relatively smoothly with the pregnancy. I was having some weight issues – having only gained 10lbs and was 8 months pregnant they were checking to see if the baby was growing -which she was. I was being induced just over 2 weeks early because of the vertigo and possible stroke. Our healthy baby girl (Princess R) was born in February 2007.
|Princess R – 7lbs 14oz
This is where the story starts to get a bit crazy. I had 2 more miscarriages (#6 & 7) due to failed birth control. We were not trying to have an other baby yet – however these losses were still quite painful.
In May 2007 I was diagnosed with Celiac Disease and was on a strict gluten free diet. We had wondered if that was an underlying cause contributing to the miscarriages and we’re hopeful that was the answer. I still had the constant vertigo that started in January 2007 and was seeing a neurologist for possible causes. During one of our meetings she mentioned Factor V Leiden again. That was the first time I had heard of it since back when I was pregnant with Princess R. The neurologist thought that could be the cause of my possible stroke when I was pregnant. I was sent to other specialists for that.
My husband and I were ready to expand our family again. I went off birth control in the beginning December 2007 and we began TTC again. I became pregnant the first month but lost miscarriage # 8 at just over 5 weeks. We didn’t take any breaks between that loss and trying to conceive again and we became pregnant again the next cycle at the beginning of January.
I was back on the progesterone and everything was seemingly going okay – baby was perfect. We had made it past 8 weeks of pregnancy and thought everything was going to go smoothly. We had told extended family and friends and had begun taking daily photos of my growing belly – our kids were excited.
|Big P and Princess R telling the family about the growing baby
A phone call came to me a few weeks later that shattered me. The baby (Triton) that had made it to 13 weeks was “no longer viable” and he had passed away (miscarriage # 9). I was confused – I had done everything ‘right’ – I was on the progesterone, was on bed rest – everything. I was scheduled for a D&C because I did not want to deliver at home.
The OB who was going to be doing the surgery turned out to be a lifesaver to me. Another miracle that Triton brought into my life. My OB had read over my chart, talked to me for a long time about my history and pegged that I had been diagnosed with Factor V Leiden, a blood disorder that predisposes me to making blood clots.
The surgery was scheduled for April 24, 2008 and I was able to get the answer I needed. When the pathology came back it showed blood clots caught in the umbilical cord cutting off the supply to Triton. He had given me the answer and we had a new plan and a concrete diagnoses for all my losses – Factor V Leiden.
Recovering from surgery, my husband and I were not trying to conceive yet. I did become pregnant (seriously it’s like he just has to look at me to get me pregnant) the next month but miscarried again (#10) likely because I was not healed up completely from the surgery. We were both ready to start the process of adding to our family and met up with my OB again.
The new plan – because Factor V Leiden predisposes me to throwing blood clots normally and any pregnant woman’s risk of blood clots increase anyway – my chances were pretty high. This is the reason for my miscarriages, my possible stroke at 8 months pregnant – but luckily there was something we could do. I was still going to be on the progesterone for 20 weeks because I did have an issue with low progesterone – it was just not the whole story.
I continued with the basal body temping and this time added low dose aspirin (it’s a blood thinner). Once I got that positive pregnancy test – I went on the progesterone and was put on another medication called Fragmin. This medication is a needle that I inject into my lower abdomen – it is a blood thinner that is safe to take while pregnant. This medication was designed to thin my blood enough to stop me from making clots and putting me and baby at risk for miscarriage or still birth.
I injected myself with this needle every day – I was covered in bruises but everything was working. It became second nature to me. Since it is not safe to go into labor while on blood thinners I was placed on bed rest at 36 weeks because I had begun to dilate. The plan was to induce me again just over 2 weeks early – I had to be off the blood thinner to deliver but could not go over 12 hours without the medication or I would risk another stroke. So, the safest thing to do was a planned early induction.
In February 2009 our third full term baby (Baby E) was born perfect and healthy. I was put back on the Fragmin blood thinners and had to continue giving myself the injections for 8 weeks postpartum.
|Baby E – 7lbs 13oz
Now, if you are still with me – thank you. It is hard to condense this story into a few paragraphs. I don’t really have a ‘moral’ or ‘message’ to this story except this is my story. It has been a very difficult and extremely painful journey.
It has taken me a long time (and I am still working on it) to accept what has happened and to begin to digest it all.
This type of cancer affects your blood, your bone marrow and then… everything else. Know what sucks even more? The chemotherapy treatment for leukemia. It is so long, so complex that the medical team taking care of Katy wouldn’t even give her the whole plan at once – they had to wait to see if she responded.The first 4-week phase actually lasted for five weeks.
She received two types of IV chemo: an oral chemo, and a spinal chemo. To check the progress of the treatments, she underwent regular bone marrow biopsies and ended up in intensive care more than once.
During the first treatment, Katy asked for palliative care to begin as she wanted to stop all treatment. She’d never really wanted treatment – she had seen her grandpa die of lung cancer and didn’t want to be sick like he had been.
The doctors pulled out all the stops to convince her to continue – brought a therapy dog up to her intensive care bed and let it get up on the bed with her. She got involved in art therapy, music therapy, and had a psychiatrist, psychologist and a pain management team.
She continued with the treatment.
During the first few weeks that she was in the hospital, I developed cellulitis in my ankles that was spreading up my legs and I popped into the ER twice to get treated. During my second bout, the doctors wanted to admit me for IV antibiotics. I needed to be with Katy and declined. Instead, I just put my feet up whenever we were hanging out in her room.
Too weak to walk any real distance, she was pushed in a wheelchair while we roamed the halls, often popping outside to have a smoke. Katy, of course, made two great friends in the smoking area – a transsexual who had heart problems and a pregnant woman, just like she’d made friends on her leukemia floor.
The ICU nurse became a friend of the family and after a particularly nasty side effects of chemotherapy – the lining of her colon separated and shed, leaving her to poop blood for a week. Katy was then put onto a liquid diet, and being my food loving child, our old neighbor made her “stringy roast” which Katy happily ate.
Oh boy, her doctor was pissed.
Katy hated that doctor and refused to speak to her, so he and I had conferences in the hallway. Thankfully this doctor was only rotating through the leukemia ward and she wasn’t stuck with him.
When Katy was discharged the first time into her husband’s care, this doctor ordered the removal of the PICC line without discussing it with us which turned out to be a major pain..
When we returned for her first outpatient treatment, they, of course, didn’t get a vein and she had to be readmitted to the hospital. The PICC line became permanent to help treat the leukemia.
The staff at The Clinic was great! Originally, one of the nurses who had a strong personality (and Katy didn’t like) started her chemo treatment but they began to open up and bonded.
The medical assistants were also good friends of Katy’s, and once, her favorite aide (who wore a wig like Katy did), so the medical assistant put on one of the wigs while Katy put on the other. They giggled and took pictures that night.
The same aide on another night made a video of the clocks turning back and Katy wanted to see it. She asked to see the video, but he misunderstood (haha!), so we had to spell out c.l.o.c.k video.
Because nothing comes easy, my husband was diagnosed with throat cancer, living in an AirBnB near The Clinic so that he was able to complete his seven week outpatient radiation treatment. He had been taking care of Rae while we were in the hospital.
While he was away getting his treatment, Katy came home and we decided that we could take care of Rae ourselves. With the neighbors help, we could go to Katy’s long treatment appointments without worry.
My stepkids saw my devotion to Katy and her treatment and felt that I should be there for their father, my husband. I felt that he wasn’t nearly as sick as she and could spend time alone while Katy couldn’t. We’ve only recently mended bridges.
More and more, Katy caught infection after infection and had to spend more time in the hospital. Her beloved PICC line was replaced she got a port placed instead. Unfortunately that too became infected and it had to be removed.
Pain was a major issue for her and while she was in the hospital, she had a morphine pump and a fentanyl patch. I was the one doling out her meds and occasionally she overdosed, necessitating Narcan.
She was in the hospital during Thanksgiving weekend and my brothers (her uncles) came to visit, which she loved. I’d given her a pain pill before they got there and was nodding off. The Sunday after Thanksgiving, my husband brought Rae – who was now ten! – to see her as well.
After that visit, the nurses administered Narcan again after questioning me – and lecturing me – about giving her extra pain medications. They were very nice about it but I felt awful.
Katy then developed a serious fungal infection and was moved from the leukemia unit to intensive care.
One of her ICU nurses made friends with her and visited when she could. That night, when her favorite nurse came by to visit, she told Katy, “see you tomorrow!” to which Katy replied, “you’d better!”
Those were the last words she ever spoke.
Her brother came up for a visit and while he was there the medical staff had to remove her port. Hospice stopped by as they were putting in another line which was very painful, but I’d told hospice that I’d given the go-ahead so that she could get some pain medication.
We spoke to hospice and the hospice staff said it would be hours to days before she passed.
We asked that she could move to a room down in the leukemia unit, where the staff began to say goodbye. We saw them often as they came in to administer medication to make her feel more comfortable.
A sign was put on the door to see the nurse before entering the room; I always wondered what those signs were for. My son and I slept in the room, talking to her and holding her hand before we went to sleep.
When I got up in the morning, I said, “Good morning, Katy” and went down for coffee and a smoke When I returned. I could tell she was gone.
She was so very still.
And like that, she was gone.
I was so glad that our relationship was good during the months that she was sick, but I am devastated that she had had such a rough life and such a tough struggle with addiction.
I felt everything. All of it.
Later, I had to go home and tell Rae that her Mommy died.
That was the worst thing ever.
My grieving is a whole other story
Since March 2019, my loving friends, you’ve prayed, danced, fallen to your knees, helped us, looked for help, cooked meals, picked up meds or groceries, bought shirts, made bracelets, hugged, cried. Laughed. Sent positive vibes. Kept us your thoughts & hearts. We are so grateful,
You’ve sorted shirts, made posters, given rides, offered beds. You’ve arranged cow, horse, and dog petting.
You’ve helped my son by being there, taking him places, or letting him hang out. I am forever grateful.
You’ve answered the late night calls.
Deciphered my illegible texts.
You’ve heard the screams, sobs, panic, and silence. You’ve hit every emoji Facebook has to offer. You’ve followed along, shared posts, sent links, looked for help, given directions, suggestions.
You’ve donated your hard earned money, time, friendship and love.
THANK YOU is not big enough.
GRATEFUL is am understatement.
We simply could not do this without support of EACH any EVERY ONE of you.
Through the multiple hospitalizations, close calls, bad news, car accidents, weekly travel to and from Houston Texas so my beautiful daughter could participate in a trial to save everyone after her diagnosed with TNBC.
Last week when we arrived for our weekly chemo on Wednesday, they told us we had to stay. A lot of tests everyday, all day.
Today we “OFFICIALLY” received the news: Dr Twong informed us that Samantha has had a reduction in the tumor they have been tracking. The tumor that grew on A&C chemo [ the red devil]. The invasive, aggressive, metaplastic cancer invading her body has reduced in size.
There could not be better news or better timing.
Yes we still have a very long road ahead, but now there is a a clearly defined road. A brightly lit road that she is paving for everyone after her.
We have three new types of doctors to meet and consult with: Surgical, Radiation, and Plastics. We are so grateful.
This Wednesday she will receive her chemo in Texas and by Thursday we’ll be making our way back to Mississippi. Next Tuesday we’ll return to Texas.
Then we won’t return until a couple days before surgery – probably the first part of October to complete pre-op testing and surgery.
That’s IF all goes well.
In mid to late November, she will start daily radiation at home, on the Mississippi gulf coast.
So my loving friends, you wonderful people. No matter what. Every single second was worth it and we could not have done it without you.
Stay with us.
There’s a lot of, “if this goes this way” type tests and procedures. Please keep doing exactly what you’ve been doing; we still desperately need you. I wanted you to know that you’ve made a major difference in our lives and the lives of every family who hears the diagnosis of Triple Negative Metastatic Breast Cancer.
Having addiction run in your family is one of the hardest thing to shield our children from. Sometimes, we just can’t help our children.
This is part one of a three part series from one of our amazing Facebook friends.
If you want to submit something to us and would rather use email, please email firstname.lastname@example.org or email@example.com. Remember, your story matters too.
My daughter Katy was always a challenge – she’d not left the Terrible Twos – and when she got older, she was diagnosed with bipolar disorder and oppositional defiant disorder (ODD). As much of a challenge as she could be, she was also very pretty, smart, and funny. One of my favorite memories is how she loved to eat so much that she’d eat in her sleep – sometimes she’d fall asleep and wake up and continue chewing. No one came between her and her food.
My very favorite Katy moment was right after she was born, they laid her on me, and she lifted her head and looked right at me. Crazy, right?
I still hold that moment close to my heart – has gotten me through a lot of tough times.
Addiction runs in the family, her father was an addict, and by the time she was five, we divorced. He was a terrible, mean person, but never did anything that kept him from seeing his kids. One of my biggest regrets is that I didn’t just pack up the kids and leave.
By the seventh grade, Katy had begun doing drugs and skipping school.
We fought a lot and when Katy was 16, she told me that she wanted to go live with her dad. Instead of my usual, “you can go when the judge says so,” I said,
“You can go and you can come back if you change your mind, but if you do this again, you cannot come back to live with me. I can’t keep doing this back and forth.”
And that was exactly what happened, she stayed a few weeks and came home. Her father moved in with Katy’s grandfather, who was dying of cancer, and Katy helped out with him and the problems caused by cancer. She decided to stay with her dad and go to school there.
Her grandpa was on hospice which meant that he had a lot of morphine around. Later, I realized that her dad was taking his father’s morphine and giving it to Katy.
Morphine turned into methamphetamines and our relationship began to crumble.
By then, I’d gotten remarried and my new husband didn’t want her to live with us when she asked to move back in. I enforced my previous statement, telling her that she couldn’t come home.
Shortly thereafter, she moved back in with her dad.
In 2007, she married a nice guy; one who complemented Katy well. She was very manipulative and he was able to deal with it. Unfortunately, after he joined the Army Reserves and was deployed to Egypt, which left Katy alone with my newborn granddaughter, Rae. Her daughter’s birth, of course, was crippled with complications; she developed a uterine infection and a week after discharge, her uterus burst.
After her major surgery, the doctors told Katy that she probably couldn’t have any more kids.
Katy was a fierce mom. She was a good mother – very firm but fair. Rae still has excellent manners and is very well-behaved because of her amazing mother. During her ten day hospital stay, she fought the nurses to make sure she could nurse Rae. Once home, she was in huge amounts of pain. This is when I believe her addiction to opiates began.
With her husband away in Egypt, Katy got involved with an old friend and with her pain pill prescriptions used up, she turned to heroin. Our relationship was still very shaky – when I told her she wasn’t allowed to come to Easter, we didn’t speak for over a year. Even still, she let me see my granddaughter.
Drugs had rotted her teeth and beautiful smile. The poor thing had to have them extracted and get dentures. I was with her and it was gruesome.
For my own mental health, I had to distance myself from her. I couldn’t deal with the drama in her life – especially the drama with her father. He, and I believe Katy as well, had borderline personality disorder. She was a difficult person – always talking, needing help, wanting something, craving love, starved for attention, and it drained my husband and son. I’d try to avoid getting drawn into her drama, but she’d sense me pulling away and she’d draw me back in.
When Mike, her husband returned from Egypt, Mike began using heroin as well and the three of them moved in with my ex-husband.
On and off drugs, Katy was overwhelming.
At 56, her dad died due to multiple overdoses. He’d been a heavy drinker and drug abuser all of his life. As Katy had bought the drugs that killed him, so her half-brothers blamed her for their dad’s death. They became estranged, which broke Katy’s heart as she loved family above all.
Both Katy and my son, Chris were very relieved when their dad died because he was so cruel to them. Katy replied to someone who said that “he was in a better place” by saying that “no, he was in hell.”
In 2017, Katy began the process of getting clean and sober and had moved to a city with a friend to get away from her husband who was still using.
She’d gone to the hospital for something and called me afterward, stating that she’d been diagnosed with lymphoma – a kind of cancer.
I didn’t believe her.
I thought she was faking it and using the lymphoma as a way for us to take her in. We had a huge blowout and she turned around and left my house.
Thanks to the heroin, her husband Mike had a bad heart valve and needed open heart surgery, and, being a caregiver, she moved back in with him.
That summer, she ended up staying with us in our cabin in Pennsylvania and I noticed she was tired. Always so tired. She slept so much and so often that I wondered if she was on drugs.
Concerned, we took her to a hospital in Pittsburgh on Father’s Day 2017 where she was diagnosed with Acute Lymphoblastic Leukemia (ALL).
I remember staring at those three awful words written on a whiteboard in her room. She had been within days of dying. Days.
And I hadn’t believed her.
The hospital started her treatment and we had her transferred to the Cleveland Clinic closer to our house. From then on, I was on auto-pilot.
I was a caretaker too: my mom was bipolar which meant that I had to take care of her when I was a kid.
I was the oldest of four and my parents divorced when I was 15, so becoming her caretaker fell into my lap. She’d made numerous suicide attempts and was in and out of the inpatient psych ward multiple times a year.
My dad had a stroke 12 years ago and was in and out of the hospital and nursing homes for seven months before he died. I went multiple times a week to visit, it was nice to spend time with him.
I was raised to be a caretaker.
I stayed with Katy constantly from the moment she had been admitted until the day she died. There were a few nights that her friends would spend time with her so that I could rest. Otherwise, I slept on a chair that converted to a bed. I showered in the family showers and drank coffee from their family lounge
Katy’s first treatment course lasted five weeks and she was stuck in the hospital for the entirety of it. The staff was awesome. They didn’t even mention the track marks on her arms or asked if she’d done drugs.
And that was the beginning of the end for us all.
Addiction isn’t called a “family disease for nothing.” The family of an addict is just as impacted as the addict.
This is her story of her son’s addiction:
My child has become an addict and loving my child is so very hard. I’m trying to find my happy as I learn to deal with his addiction.
With the overload of health issues around here, along with the common “life stuff,” I willing took a break from blogging after the last attacks from trolls; trolls who don’t know me, know my child, know my life, know my situation, and will never understand my life or my thoughts.
Simply: I took a break because I wasn’t strong enough to keep going,
Three blogs, five days a week, and two little freelance writing gigs with groups have kept me tied to the computer dumping out my odd take on humor, insane fake advice, and occasional a vaguely serious topic.
I have decided I will blog, on my blog, and the trolls will not, cannot affect me. I won’t allow them that kind of power. I have to share this story because as odd or awful as this is, I can’t believe I am the only one. Sometimes knowing you aren’t alone, can make a differences on your life. It has in mine, just like everyone here at Band Back Together.
For a very long time, I’ve been living while waiting for the other shoe to drop.
I call it “living” but it’s really just existing – when I can muster the strength to push the elephant in the room to the back of my mind. This horrible addiction elephant.
When someone you love makes horrible choices, you can still love your addict child, but you also have to make a choice.
I made a choice to love from a distance to allow my son to deal with his addiction on his own time, allow that person to do things at their will, wherever they wanted. The condition was: I would not support that person, their activities: not emotionally and definitely not financially.
Of course that comes with a higher emotional consequence for me, a soul-eating, mind -boggling, hellish existence.
Torn when the phone doesn’t ring, furious, emotional and torn when it does. There is no happy medium, is no mutual enjoyment of life, it’s an inner ring of hell.
It’s odd how the human brain learns to process things so completely outrageous and unacceptable if they happen often enough; the brain removes logic to save the heart. The brain knows if one more little piece of your soul falls to the floor, you will collapse and finally fade away.
Things you never thought you would hear, become expected. Disappointing? Of course. Scary? Almost every time. Seeing red with anger? A lot. Somehow, your brain allows it to roll off your back.
loving an addict through childhood
You can’t fix it, they don’t want to be fixed, no matter how absolutely insane and ludicrous the situation, you cannot even point out how completely illogical the situation is, let alone offer solutions. There are no less than 683 million reasons why all of your ideas are completely stupid.
You learn to focus not on the highs, not on the lows. Not the shocking news, but only that you love that person, your child, who just happens to be an addict.
You make sure whatever you say won’t offend them, or their choices, and you make double damn sure that person knows you love them, you love them deeply, you love them completely, you love them from your soul. You only want the best for them, safety for them, happiness for them.
No one really has the same idea of happiness.
it took me 43 years to realize that.
Another thing I learned; just because it’s ” the normal” thing that you’d make anyone happy, happy and delighted and feeling so very lucky, this can seem like hell on earth to someone with a different view of happy. So who am I to attempt to enforce my idea of happy on anyone? Simply put, I am no one. I am just a daughter, a wife, a sister, a mother, an aunt, a friend.
I am made up as we all our of a unique cocktail of our childhoods, our teachers, our elders, our peers, our life lessons, co-workers, books, and shows we have seen. Just a big casserole of a human being trying to find “happy.” When I achieved happiness, I assumed it would be wonderful – more than wonderful – and that, in turn, everyone else would become happy. Everyone would see how hard work brings happy, how loving each other brings happy, how walking the right road, singing your own song, and smiling would obviously land you in happiness.
The past 20 years, I tried to shove people into the happy, I tried to drag them into happy, push them in, beg them, lure them, slide shows of happy, handmade cards, long emails, song dedications, heartfelt talks, and hugs, I could surely get them to happy. Once they saw happy they would be like “duh, I want to be happy too!”
I was wrong. Their happy was so different than mine so I had to accept they would not be in my happy with me. Maybe they were taking a different route, and we would meet up in happy. Maybe their happy just meant more pit stops, more experiences, different criteria, maybe their happy would never lead to the same location as my happy. What would I do then?
Their happy could be really good for them, so I will work on being happy for their happy.
Little crumbles of your heart fall as your soul tears.
In the end, all you really want is for them to be happy. You convince yourself not to be such as narrow-minded selfish ass who demands everyone’s happiness is within arms reach of your happiness. We are not all alike, and really, what a boring world that would be. Keep telling yourself this as it makes it easier to persevere your heart, mind, and soul. Besides, it makes them happy that you are happy for them. It’s painful but it’s good for them and for the relationship.
Then the call comes, not a happy call, you are prepared because you know when this disease spins ’round, the calls come in two forms and two forms ONLY.
One, the world’s best thing ever, everything is amazing.
The next call, though, could be in a week, a month, a day, or within several minutes: the world is ending, there is no hope, no escape.
There’s not a single thing you can do to make it better. So you listen, try not to cry, remembering to love, offer helpful solutions, offer to make arrangements or calls, you do what you can and it’s usually for nothing. It rarely works out, but you make damn sure they know you love them so much you can’t breathe when they are in pain.
The calls – you see the caller ID – it’s a number from a state that you don’t know, but you do know who is on the other end, you never know the type of call, only that it’s from them. So you take deep breaths and you prepare to play the roulette game of their life. What kind of call you don’t know it could be: an incredibly fantastic words of grandeur.
Or the call can be gut-wrenching, heart-breaking, sobbing pleads for help.
You don’t know, because you can’t know but you answer the phone, inviting the roller-coaster of love and hate and pain into your world.
Nothing surprises you now.
As long as it’s their voice on the end, you are prepared, it’s now become common practice. You’ve learned to stop yelling, begging, urging, and learned to focus on conveying the fact that you love the elephant in the room. You love that elephant when your eyes open in the morning, and you love that elephant when your eyes close at night without a tear running down your cheek. No one sees your tear.
No one hears your cry and no one, no one can understand why this elephant is needed, deeply; it has become comforting.
Then as you are in your happiness on the back porch wind blowing you sit with your little family, cross-legged looking at your happiness, eating sandwiches, and thinking how peaceful and loving and happy this all is.
The phone rings.
The addiction elephant steps outside. The elephant sits on your chest, takes your breath, and overcomes you. Sometimes, when that elephant climbs on you, you compartmentalize you soul, your heart, and your brain as this allows you to attempt to speak in a sane, calm, tone, using gentle words, no blame, just love.
The call ends, with mutual ” I love you’s.”
The happiness is now gone for them as they are faced with a very adult matter that can’t be “worked away.”
You don’t remember the rest of the happy picnic: the people in your happiness with you do not have a conversation about it. You move on as you do after every call. But something is wrong, very wrong
You can’t tell anyone, yet you don’t cry, you don’t sob, you don’t fall to the floor, you don’t steal a car to get to the addiction elephant to hold them.
What the hell is wrong with you?
Why are you not responding like a human?
Why aren’t you happy?
Why not like the other times?
You haven’t fallen apart yet.
Will you fall apart?
Will this change your ability to move forward?
You know that If this person comes back, can you handle it?
Can the happy team handle it? What will be the cost of the elephant if you don’t?
What will be the cost of happy if you do?
I know the other shoe will fall, there’s just no way to process this without dying more inside. Maybe I am out of a soul, a heart, tears. Maybe I have been cried out, maybe I am stronger, maybe my brain is trying to protect me.
I am very much not okay, mostly because I feel okay, there is no way that I should feel okay.
Why am I not shaking, sitting in the shower crying, sobbing, and vomiting like I’ve done before when the bad news comes?
I’m not even shaking.
The shoe will drop, I hope, I beg, I have the strength, the knowledge, the wisdom, the compassion, the ability, the life experience, balanced with the brain, the heart and soul, to take this journey.
To share my happy, to understand their happy, to make a new happy, but most of all, to convey they undying, deepest of love and the basic humanity to make their happy the best happy I can.
Please find your happy; let everyone you know how much you love them – no matter what what makes them happy.