special need highlight: children with cancer (or in remission)

March 30, 2014 by nohandsbutours advocating, blood conditions, cancer, Children Who Wait, Family Stories, retinoblastoma 4 Comments

We tend to forget that our daughter had cancer. There are reminders, like the huge scar across her belly, but to us she is just our lively, lovable two-year daughter. We know that cancer is a scary word, and it was a scary time that Maya went through, but she survived it and we would never have let it scare us off from adopting her.

Maya was born with a cleft lip and palate, but when she was four months old she was also diagnosed with a Wilms’ Tumor (a cancer of the kidneys). She needed surgery to remove one of her kidneys, and almost a year of chemotherapy afterwards. We began the process of adopting her when she was still undergoing chemotherapy and, while we rejoiced to hear that she had been declared cancer-free, we wouldn’t have changed our mind if the test-results had been different.

I know that our situation is somewhat unusual in that we met Maya first and decided to adopt her. Some might consider us ‘brave’ to have chosen to adopt a child with cancer, but that’s never been the way we’ve seen it. Yes, it has taken courage to face the possibility of a recurrence of the cancer, but the fear of that happening pales beside the joy of being Maya’s parents. We have three biological kids and when they were born we didn’t know what the state of their health would be. In a strange way adoption meant less was unknown. Maya’s cancer is something that was diagnosed, thankfully just in time, and operated on and treated. It’s in her past and we believe that it won’t be in her future, but even if it is, we will go through it with her.

Can I slip in one of my pet peeves here? The words we use are powerful. I don’t like to hear Maya labeled as a ‘cancer-survivor’, or as a ‘cleft lip and palate baby’, or as an orphan. Maya had cancer, now she doesn’t. Maya had a cleft lip and palate, now she just has a scar on her lip. She was without parents, now she is a much-loved daughter. With cancer, as with all other medical issues, I think it’s really important to see past the disease and look at the person. Cancer is a big deal, but the bigger deal is can you love the child? Having had cancer, or even still having cancer, doesn’t define who someone is. To miss out on knowing and loving a child because of the fear of cancer is such a loss.

The check-ups aren’t much fun (try getting a wriggly toddler to lay still for ultrasounds), and there will always be a little anxiety waiting for the results. The chemotherapy meant that Maya wasn’t healthy enough to have her ENT surgeries until she was 27 months old, which is a long time to wait and it has definitely delayed her language development. It also meant that the experience of the lip and palate repair was so much more traumatic than it would have been if she’d been able to have the operations when she was still a baby. Seeing her go through so much pain and frustration, it was easy to feel angry about the cancer and the impact it had on her life. Cancer is a cruel disease.

image

Maya is such a fighter. She clung on to life when the tumor was growing in her tiny body. She recovered from a major operation to remove it. She smiled her way through the chemotherapy treatments and became quite a favorite with the nurses. We get to enjoy her feisty, joyful personality every day, and we can’t imagine our family without her.

Children with Cancer (or in Remission)

Retinoblastoma is a rare form of cancer, which starts in the retina of the eye. Once diagnosed, children receive several rounds of chemotherapy. In some cases, doctors will decide to remove the eyeball so that the cancer does not spread to the brain. Retinoblastoma has one of the best cure rates of all childhood cancers (95-98%). It is almost always diagnosed before the age of 3. The children in this advocacy post have all been diagnosed with retinoblastoma.

Greg

greg

Greg is a 2 year old boy who is happy, active and full of life. He is currently living in the care of Bethel China, and lives in a house with 4 other little boys. He loves his Bethel mamas and loves playing with them and showing off.

Greg was diagnosed with Retinoblastoma in November 2012. He began chemotherapy soon afterwards. He is in remission but is still doing maintenance chemotherapy to prevent the spread of cancer into the brain. He will soon have his left eye removed. His right eye is healthy. A few months ago, this boy was very sick and it is amazing to see how he has bounced back and jumped into living life to the full with both feet.

Tabitha

tabitha

Tabitha is a beautiful 4-year-old little girl who is in a preschool program at her orphanage and she loves it! She graduated from one class last year and is in the middle preschool class. She was diagnosed with Retinoblastoma, a cancer of the eye, and received chemotherapy for 3 months in the summer of 2012. In September 2012, she had her right eye removed. She has not had any more treatment for a little while and her health status is unknown. Watch some videos of this beautiful girl here!

Gabe

gabe

Gabe is an amazing 5-year-old boy who lives in Bethel China’s care. He had one of his eyes removed before the age of 1, and then another removed just before his 2nd birthday. He has been in complete remission for 3 years and he is a very happy, healthy and smart little boy. He started preschool in September 2010, and he learns Chinese, English, math, science, reading and writing. He can read and write in Braille and he has age appropriate speech and language.

Read more about Gabe here, and watch his video here!

Haddie Update: My family has found me!

Haddie

Haddie is a super sweet fourteen month old little girl who has not been formally diagnosed with Retinoblastoma. It is unclear whether she has glaucoma or cancer at this time. A formal diagnosis is in process for her. She is listed with ATWA. Read more about sweet Haddie here.

For more information on beginning the adoption journey, please contact The Advocacy Team.



4 Responses to “special need highlight: children with cancer (or in remission)”

  1. emily says:

    I’ve watched your daughter go through all of this from a distance and prayed for a family. I was thrilled and even cried when I read she was matched with a family. I have a daughter from China that had cl/cp and she is doing wonderful. Maya, has been a blessing and a reminder what life is all about. Bless you and kiss Maya and tell her there is a family in Canada that prays for her daily.

  2. Sherri says:

    Oh my I also followed Maya and was so thrilled when she was declared in remission. So happy to know how she is doing now!!!

  3. Sarah r. says:

    My son had retinoblastoma as a toddler and had the eye removed because the tumor was big enough doctors didn’t want to risk it leaving the eye but many times the eye and vision can be saved. He’s doing great now at 12 yrs old and most people are shocked to learn that his one eye is a prosthetic. I pray that these children will be adopted and get the care they need.

Leave a Reply