The Goodwins

As you may or may not know, our daughter Ella has a giant congenital nevus (”GCN”) (a/k/a a very large hairy mole) on the left front quadrant of her head, including part of her forehead. Medical professionals are telling us that this type of nevus generally carries a 6-10% risk of melanoma.

Typically, if the nevus is not removed, one will need to continually monitor it for the possibility of it becoming a melanoma. Changes in size, color, shape and texture can be some of the indicators to watch. If it becomes a cancerous melanoma, it will require quick removal, with the risk that the cancer spread prior to the removal.

Doctors also inform us that Ella’s current age range is the optimal age for the surgery. We are told that those that are older typically have more scarring and healing issues.

Due to the combination of:

1. The nevus being “hidden” in Ella’s hair;
2. Ella having Down syndrome making a potential issue for self-diagnosis;
3. The associated risk of melanoma; and
4. Concern of the result of emergency removal if becoming a melanoma in later years due to the speed of surgery (limiting the surgical options) and healing at an older age.

Bonnie and I are opting for removal of the nevus, through a process of using skin-expanders. A skin expander is essentially a very fancy and expensive water balloon that is “inflated” with saline (a salt water solution) through a “port” that is under the skin through a needle.

On April 15th, six days after turning two, Ella is having two skin expanders placed in her head to promote growth of additional skin adjacent to her giant nevus. One will be in the front of her head partially underneath her forehead and partially under her hair. The other will be in the back of her head. This will be done by Dr. Bauer at Children’s Memorial Hospital in Chicago. She will be kept overnight in the hospital for observation.

These 350cc expanders will be injected periodically (every 4-7 days) with saline (likely by me) until her second surgery on July 8th. These expanders will be fully expanded by the end of this process.

During her a second surgery the Dr. Bauer will remove the expanders and replace the nevus skin with the new skin from the expanders. Ella will be kept again overnight at Children’s Memorial. There is a chance an additional procedure will be required four months later, but we are told expanders will not be necessary for that procedure.

We are told that the expanders will cause minimal discomfort for Ella, but will likely be hard for others to see (especially her parents). If you are interested in more information on nevi, the Nevus Outreach at http://www.nevus.org/ is an excellent starting point. Our little Ella is periodically shown at the top of the site (http://www.nevus.org/images/kids/ella.gif).

We are asking that our friends and family pray that:

1. Ella remains healthy until April 15th so she can have her surgery;
2. The surgery on the 15th goes well and she can be released from the hospital (Children’s Memorial in Chicago) on the 16th;
3. No serious infections occur through July 8th;
4. Ella remains healthy during this time so the expansion can be consistently done as expansion cannot be done if Ella is ill;
5. People still respond positively to Ella during this time despite her appearance;
6. A minimal amount of strangers make to Bonnie and myself inappropriate questions or comments;
7. Ella is healthy for the removal surgery in July 8th;
8. The surgery leaves minimal scarring on Ella, both physically and emotionally;
9. The surgery truly reduces the risk of melanoma to a negligible amount;
10. Melanoma is not present in the removed skin;
11. Ella continues to be able to overcome her developmental disabilities during this process and after; and
12. Bonnie and I feel peace in this matter.

Ella is certainly a blessing to Bonnie and me, and this has been a difficult decision for us to make. It is one that certainly makes our hearts ache. We would like to thank you for your continued prayers as Bonnie and I have made it through many challenges in the last couple of years, in no small part by the prayers of our family and friends.

If you would like additional updates on Ella, please send a request to Bonnie (bongoodwin at gmail dot com) to be put on the update list.

God bless,

Kirk and Bonnie

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