03/23/2010
by Michael Wells Several people have asked Sherrie and me when will we know the results of Brady’s transplant. We hope to see positive results (his body making white blood cells) within the next 2-3 weeks. But this is just the beginning of a rather long and treacherous journey which Brady has just begun. Here are a few of the “road signs” that await Brady: Germs Until day +90 he cannot go near anyone and he must wear a mask while at the clinic or hospital. Visitors: Maximum of three visitors at once, wearing masks, healthy (We must ask about them being sick, fevers, rashes, exposure to chickenpox, etc). Brady must sleep alone and not with parents/pets. Dog(s) cannot lick Brady. Brady can pet a dog then wash his hands well. For 6-9 months he must avoid all crowds (church, mall, movies, daycare, etc). His immunizations begin all over again at +1 year. Diet His taste buds will change, he may prefer spicy or salty foods, may become a picky eater. He can only drink juice which is pasteurized. He must avoid fresh juices unless you are sure a VERY CLEAN process was used to make it (well scrubbed fruits). Dairy- pasteurized. Small amounts until system gets used to it. Brady can have Lactaid drops or lactose free products. Fruits/Vegetables: Scrubbed under running water. Meats/Fish/Eggs: Medium or well done. No buffets until +1 year. (Yeah, because I hate buffets)! Leftovers: if consumed within 48 hours. His own drinking glass, do not share. (This will be difficult as Brady loves to drink everything we’re drinking). Hygiene Showers are better than baths. Use Dove soap for sensitive skin. Apply lotion once a day. If very dry use Vaseline Intensive Care Advanced Healing. Mouth care: twice a day using a toothbrush and a child’s toothpaste. (Sherrie’s been doing this since Brady was born) Sun exposure: avoid forever, SPF 15 or higher, can use zinc oxide ointment on lips and nose. Activities Brady will be tired until day +90. He must wear gloves and mask if playing in dirt, sandbox, or gardening. (This one makes me want to cry). Avoid public pools, oceans, lakes, and hot tubs for +1 year. (This one just breaks my heart). Call the doctor if Brady Gets a rash that does not go away (sign of GVH disease). Is becoming dehydrated. If diarrhea or vomiting for more than 24 hours. Vomiting; do not give anything to eat or drink for 2 hours. Then offer water, tea, ginger ale, or flat soda. Diarrhea; give clear liquids for 12 hours. Then add bananas, rice, chicken, applesauce, toast. Avoid dairy. Develops thrush (white patches), ulcers develop in mouth. If he comes in contact with someone with chickenpox or shingles he must get VZIG shot within 96 hours (sooner the better). FYI; shingles are common 1 year after transplant and is very painful. Temperature of 101.5° give; Tylenol and call the doctor. Give cool, clear liquids. NEVER give ibuprofen (Motrin/Advil) Temperature of 100.5° to 101.4°; DO NOT give him Tylenol. Take temperature every two hours ancillary. Call Doctor if three low grade fevers within 24 hours. Medicines Brady might be on up to ten different types of medicines at home. Needless to say, Brady has a very long road ahead of him. Your continued support of his journey with your hugs, thoughts and prayers will ease this odyssey and shorten the duration.“8 Years Later—Still No Cure for Pediatric Cancer” is a series of posts revisiting the journal kept by Sherrie and Michael Wells during the cancer diagnosis and treatment of their son, Brady Michael. Hopefully these entires will provide an understanding of the journey families face when dealing with these horrific diseases and of the important work the Hugs for Brady Foundation does.