With some exception, most journal entries are written by Erin and posted by Meg Turnbull or Maike Johnson.
Updated March 2019.
Ways to help (in no particular order):
- Donate blood or platelets (pledge here: https://sleevesup.redcrossblood.org/campaign/sierras-sisters/
) or just go to any blood drive and let us know you did that! As of March 2019, Sierra has needed 50+ transfusions during her treatment journey.
- Host a blood drive in Sierra’s name (https://www.redcrossblood.org/hosting-a-blood-drive/learn-about-hosting/how-hosting-a-blood-drive-works.html?
- Sign up to be a bone marrow/stem cell donor at Be The Match (https://bethematch.org/
) – the registry currently lacks enough diversity to match the needs of the patients who require marrow or stem cell transplants – they need your help!
- Donate to the CHOP Oncology Department (https://www.chop.edu/centers-programs/cancer-center
), the Leukemia and Lymphoma Society (https://www.lls.org/
), or to the annual CHOP Parkway Run & Walk (http://parkway.chop.edu/
) in Sierra’s name (or of course just donating is also great!)
- Help us organize or join our fundraiser CHOP Parkway Run & Walk “Sierra Rocks” team (connect w Erin)
- Collect tabs from aluminum cans and mail/bring them to Erin (the hospital can make money from these)
- Erin/I have been unable to work since May 2017 due to the intense caregiving demands of this health journey. I have been without unemployment compensation or FMLA since October 2018 and am on Medicaid and Food stamps (which are great!). I am fully/solely financially and legally responsible for Sierra. If you are able to contribute to our GoFundMe campaign, please do so here (https://www.gofundme.com/SweetSierraJohnson,
make sure NOT to confuse the CaringBridge donation link). Uber Eats credit, or a check or gift cards are also useful to cover diaper/gas expenses or occasional respite care/babysitting.
- For oncology floor staff at CHOP: Bring tasty treats of some kind, or help us with a purchase of Insomnia cookies for the nurses and staff (please coordinate with me/Erin)
-Offer to babysit so we can get a break to go for a walk, or run errands, etc. If we are on contact precautions in the hospital we are particularly limited!
- Keep us company, stay in touch, etc – it is easy to begin to feel isolated in this experience and to lose touch with a sense of community.
Children’s Hospital of Philadelphia (https://www.chop.edu/centers-programs/cancer-center
) - contact me (Erin). The room we are in will change with each admission. After April 1, 2019 flu season is over and we can have visitors at the hospital. Please be sure to be healthy, as Sierra' s immune system will frequently be very weak during treatment. Also if you are visiting us at CHOP, flowers are not permitted on the oncology floor.
Background & Treatment timeline:
- Sierra was born full-term without any complications and was a healthy at birth. Before mid-May (2017), Sierra had never been sick.
- Around mid-May (at 11 mos of age): Sierra had an ear infection in each ear and was subsequently given a ten-day course of antibiotics by her pediatrician. She continued to have frequent low-grade fevers. I took her to the pediatrician and/or to urgent care 5 times before we were admitted to CHOP for blood work on the evening of May 22. The ER docs and nurse practitioners very quickly focused on the fact that all of Sierra’s blood values were normal except her Absolute Neutrophil Count (a scary 30), her Red Blood Cell Count, and her Platelets. Her Hemoglobin was 2.9. The docs said if these counts had been only a little low, they might suspect a blood borne infection – viral or bacterial – but since the counts were incredibly low, they were more suspicious of Leukemia.
- May 23, 2017: we had our diagnosis. One more piece of information remained, which was whether or not her Leukemia cells had a chromosomal anomaly.
- On May 26, 2017: it was confirmed that Sierra did in fact have the type of Leukemia where the cell has an anomaly- Acute Lymphoblastic Leukemia (akute lymphatische Leukämie) and KMT2A (MLL) Gene Rearrangement (the last bit describes the particular anomaly). The first admission was 7 weeks. Sierra was subsequently treated until February 2018, mostly inpatient.
- February – May 2018: the cancer was in remission and Sierra was at home “on maintenance chemo”
- May 2018: Sierra’s cancer relapsed, this time in her central nervous system, ultimately requiring radiation to save the vision in her right eye. The vision in her left eye was unfortunately permanently damaged.
- May-July 2018: maintenance meds and preparation for bone marrow transplant, including bone marrow biopsies, spinal taps, meds 24x7 for a month, surgery, placement of another central line, various scans, and the recruitment of a donor.
- July 31- September 11: inpatient stay for bone marrow transplant, ultimately using her father’s stem cells for infusion (August 9) after another donor from Be The Match became unavailable
- September 11, 2018: January 28, 2019: Time mostly at home with outpatient procedures and following post-bone marrow transplant protocols for immune protection
- January 28, 2019: relapse of the central nervous system confirmed
- March 26, 2019: infusion of CAR-T, Sierra’s T-Cells, reconfigured to identify and attack leukemia cells (https://www.chop.edu/treatments/car-t-cell-therapy-immunotherapy-b-cell-acute-lymphoblastic-leukemia