Make A Child Smile

Mischa's Story
written by mom Marilyn

Mikhail (we call him Mischa) was born in Far Eastern Russia in 1996. When he was 3 years old 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 a 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 to his ears, 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 20 crisis points in Mischa’s battle with cancer until now. Thankfully, his MRI’s remain clear of cancer, although there is scarring. His neuropathy and balance problems continue to deepen (or rather reveal themselves), and ambulation and function is variable.

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, his day is pretty much school, snacks and rest. On weekends he needs extra sleep 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.

Mischa is in remission from Medulloblastoma. He how has cataracts in both eyes and learning disabilities. He is in the 3rd grade in a wonderful school that is very patient and kind. He receives services from his school’s resource room, a physical therapist, an occupational therapist and private psychological therapy. He continues to love music and likes to sing.

As a growing boy, he has interests in the computer and computer games. He is just beginning to learn to read and needs very large print. He is working hard on it and we think he will read, although functionally will probably use a computer for accuracy and the speed required for school.

We are trying to deal with moods - and some very frustrated and angry feelings. He can’t ride a bike or draw really, but he can build and is very inventive with duct tape!

He loves his MACS mailbox and we try to stop at it once a week on the way home from school. He currently sees about a dozen different specialists for hormone replacements to kidney issues, but we try to space out the appointments so that he can have a fairly normal school year. Fatigue is still a big problem, as is nausea and balance, and Mischa continues to be a brave and steady patient. Samantha and Jacob are great siblings and try to keep him laughing! We didn’t really know what late effects were going to appear (like the cataracts, or hearing loss) so we go day to day. We are grateful!

Abilities:

See: Yes, but has losses in perceptual fields and generally needs larger print and material directly in front of him.
Hear: Yes, with some hearing loss.
Talk: Yes, a lot!
Walk: Yes, with cane & walker.
Read: Yes, primer level.
Use hands: Yes, but has difficulty with fine motor tasks, but can build with Legos and do 100 piece puzzles if the pieces are thick enough. He cannot write.

Siblings:
sister Samantha, age 22
brother Jacob, age 15

Child's Interests:
Mischa loves the computer. His favorite things are trains, boats and planes. He loves to listen to music and sing. He loves fantasy figures such as rescue heroes, action things of any kind, like Power Rangers, Ninja Turtles, etc., but he also loves traditional themes like animals, dinosaurs, etc.... He loves to shop at the dollar stores for toy dinosaurs, soldiers. He loves castles and building with larger blocks.

Sibling's Interests:
Samantha is a junior in college majoring in psychology. She enjoys knitting and modern dance.

Jacob is very interested in singing and art. He loves theatre and musicals.

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