Annalise's Story: Parent's Letter ProjectWilms tumor (nephroblastoma) - Annalise's parents
Annalise was 2 ½ years old when she was diagnosed with Nephroblastoma in June of 2007. The symptom that started her journey from cancer patient to cancer survivor was blood in her urine. After a battery of tests (Magnetic Resonance Imaging/MRI, Computed Tomography/CT, X-ray, and Ultrasounds) which initially were thought to be conclusive for a urinary tract infection, later revealed a mass in Annalise's right kidney. A decision on how to deal with the mass had to be made:
- Wait and see - If the mass was a blood clot then it may clear itself.
- Biopsy - Determine what the mass was (This procedure carries a risk of exposing the mass to other organs of the body if it is a cancerous type of mass).
- Remove the right kidney.
This was not an easy decision to make for a 2-year-old girl who has had no previous history of cancer and no previous history in the immediate or extended family. With the guidance of several experts at Children's National, the decision was made to have Annalise's right kidney removed with the tumor intact. Knowing that a full biopsy days later would reveal the truth about the mass, we were comforted by the confidence and expertise of the doctoral staff at Children's National that led to the correct diagnosis.
It was through two recommendations that we selected Children's National:
- Primary care pediatricians
- Healthcare provider
The formal diagnosis was a Wilms tumor with favorable histology: stage II, standard risk. From the date of Annalise's surgery on June 3, 2007, to the start of her first chemotherapy treatment on June 7, the course of her treatment (a 6-month treatment regimen) was defined and shared with us within this first week. The ability for Children's National doctoral staff to speak with us and to relay and define medical terms that were unheard of to us provided a sense of calm and ease in a time of worry and unknowns.
From our experience, we would recommend that other parents:
- Rely upon the help of others. The entire process of diagnosis, treatment, and post-care, took countless hours/days of time that had to be devoted to our daughter. Without asking for help from family, friends, and our church, we would not have been able to come through the year with such positive attitudes. In addition, it is just as important to maintain a parent-to-child relationship with other siblings. Annalise had one younger brother during this time. It was just as important to ensure that Andrew felt loved and cared for as much as Annalise.
- Ask questions. For us, we were blessed with having a grandparent who teaches Physiology & Biology at the collegiate level. This provided us with great dialogue with the oncology staff at Children's National. From understanding Annalise's weekly blood counts of ANC (absolute neutrohpils count) by being able to perform a calculation of ANC = (Segs + Bands) x WBC, white blood count x 10), to charting her performance week by week via excel to ensure what was being reported on paper was directly shown via Annalise's behavior and moods.
- Stay Positive, Increase your Faith, and Pray. It was during this time frame that our family became involved in a church setting. Having a support group and prayer team during this time had a life changing impact for all of our family.
- Seek out knowledge of this type of cancer. The following web sites provided a wealth of knowledge in addition to providing questions that were specific to our condition that spurred great dialogues with the doctorial staff at Children's: Cure Search For Parents and Families section, Beyond the Cure, American Cancer Society, Chemo Care, National Cancer Institute, and the National Institutes of Health Clinical Trials.
- Connect with other parents who are going through cancer treatments. We met so many parents during the time of Annalise's treatment that we became cheerleaders for their children. Simple things such as giving praise for completing a craft while in the oncology office to giving congratulations for moving to the next grade in school was commonplace.
- Keep a diary from the very beginning. We kept a diary from the time Annalise was in the hospital prior to any diagnosis up to one year later. It is remarkable to be able to recall her moods and feelings during her tenure of treatment.
- Experiment with food types. With the onset of chemotherapy, Annalise had experienced a change in her taste buds. It was during this time that we struggled to keep weight on her.
Take advantage of Children's National support offerings:
- These web site offered great new recipes along with ways to spruce up original dishes: Suite 101 and American Dietetic Association.
- This Spinach Pasta Casserole is one of Annalise's favorites.
- Child Life Specialists
- Growing Hope
We know beyond any doubt that being led to Children's National was the right choice for Annalise. We have been blessed to meet so many selfless individuals from doctors, nurses, child life specialists, social workers, and other pediatric patients and their parents that we give thanks regularly in our prayers for how our lives have changed so positively in our outlook on life and the prioritization of what matters. To sum it up, we would say that the meaning of life is helping people. That's a legacy that we keep in our hearts and give thanks to in our prayers, for all those from Children's National that have given our daughter an opportunity to live a long, healthy life.
Annalise’s parents, James & Christine