Mischa D. - Quilt Finished in 2006

Born: November 17, 1996

Illness: Medullablastoma, Neuropathies of hands and feet

A Thank you from Mischa's Family!

Written May 8, 2007

The quilt is unbelievably beautiful, much more than I ever imagined.  Mischa will be so excited.  Thank you so much and to and all of your angels. Pediatric cancer is such a journey, and along the way the people you meet and the people who share with you are so wonderful...it makes the journey much more bearable.  Gratefully, Marilyn and Richard D. and family. 

Mischa D.'s Story

written by mom Marilyn

Mikhail (we call him Mischa) was born in Far Eastern Russia in 1996. He was abandoned at birth by his biological mother and was apparently a very sick baby. He spent time in the NICU and many months in a baby hospital and eventually, at a year of age, came to live in an orphanage. He lived there until he was 3½ and Mama and Papa came to bring him home to the USA.

In all of his time in Russia no family member visited him or inquired about him. Recently, we learned that he had been born with an extra thumb, which was removed surgically at the age of 7 months. It had been reported as a growth. It has come to be significant, but that is later in the story. He was not a particularly healthy infant or toddler and had many infections and apparently had also had some seizure like activity, probably signaling the start of a major health crisis to come.

Mama and Papa went to get Mischa in February, 2000. Far Eastern Russia is fascinating and the people were warm and friendly, but it was unbelievably cold. In that part of Russia very few people have cars so people walk, dressed in all manner of things. It was quite a sight driving through villages with people dressed for the weather walking in the dark at 6 a.m. for miles to a bus to get to work. While life is difficult there, people gather for good times and work hard to raise their families. We would find it impossible to live without hot water all winter. They accept it, drink tea, eat simple but tasty food, enjoy each other and celebrate life in a much less hurried way than we are used to.

Mischa loved the USA. He learned English very quickly. He had many digestive problems and also some food hoarding problems. He ate way too much and then vomited. Little did Mama and Papa know that these were signs of a growing brain tumor. Back and forth to the doctor, first to get rid of intestinal parasites (was this making him sick?), then again and again for possible milk allergy, possible TB, possible sinus disease, many many questions and no answers. Mischa also stumbled a lot, but since he had never worn American type shoes, we tried various different kinds. In the orphanage children wore sandals with tights, and boots outside. Reeboks, etc. were very unfamiliar to him, so we thought it was just an adjustment. Since we didn’t know that he had been ill in Russia and possibly also had birth trauma effects, we didn’t know what was normal for Mischa and what was not, and the first few months at home were full of many adjustments with siblings, new parents, new foods, etc...

During this period Grandma became very ill and had to move to a nursing home so there were lots of adjustments all around. One and one-half income became one and the financial stress on the family started.  Unfortunately the balance problems combined with the vomiting, later combined with horrible, wrenching headaches meant that he had Medulloblastoma, now grown to the size of a tangerine, sitting on the base of Mischa’s brain stem. What followed was like a bad dream: preliminary diagnosis in Saginaw, night ride to Ann Arbor (don’t let him fall asleep, he may never wake up), several days in special care on steroids to bring down the brain swelling, surgery (tumor resection), 2nd surgery to handle fluid difficulty and put in a shunt just in case, 3 weeks in the hospital, 6 weeks of daily radiation, with horrible burns, a course of chemo that lasted 17 months.

There were many procedures at home including 9 months of TPN feedings through Mischa’s broviac, antibiotics, shots, blood infusions, platelet infusions, broviac infections, shingles, neuropathies of his hands and feet that kept him from walking for 8 months and then eventually serial castings on both legs and feet for foot drop, leg braces, and now a walker, wrist braces, many medications, bowel problems, urinary problems, emotional difficulty, learning disabilities, visual field problems, many endocrine imbalances. There have been about 12 crisis points in Mischa’s battle with cancer until now. His MRI’s remain clear (including November, 2004!) but his neuropathy and balance problems continue to deepen, or rather reveal themselves and ambulation and function is very much changed.

Older sister and brother, give Mischa lots of love and attention. Our family dearly loves Mischa. When he first became ill, we loved him but we barely knew him. His first Christmas in the US was in the hospital, bald, vomiting and on IV chemo. Then he was so sick and immune compromised that we couldn’t really explore with him or let him have a lot of social contact. We still can’t. His fatigue is great and while he goes to school (with naps and a wonderful full time aide), his day is pretty much school, snacks and rest. On weekends he needs extra sleep, but he has started to go to Sunday school this year and can do an occasional outing. Through it all Mischa has a wonderful smile, a strong will and “I want to be in there!” attitude.

With the expensive adoption and the cost of being sick, we are financially very stressed. We now have a home that is more affordable and has wider hallways that Mischa can move around in much better. His biggest danger is when he turns corners, so he needs fairly wide areas. He is also all boy so he is always in a hurry and would dearly love to be more active. We have not been able to get him the type of physical therapy he needs on a regular basis due to the co-pays. He would enjoy music lessons and swim classes as well.

Written by Mischa's mom Marilyn in May 2005