September 2000 Updates on
Mary Beth
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9-3-00 Greetings from the Bone Marrow Transplant Unit on the 9th floor of Children's Hospital! Mary Beth has laid claim to Room 4 of the unit as her home for the next several weeks. She checked in late Wednesday evening and began her chemotherapy treatments on Thursday, so today is hump day. As of today, she has received 4 of the 7 treatments. The level of chemotherapy drugs administered each day is very high. Consequently, the side effects are increasing difficult. The primary side effect she has experienced is getting nauseous and sick. To counteract this unpleasantness she receives anti nausea medication. This medication makes her very sleepy, so she has slept a lot yesterday and today and has not eaten either day. On Thursday and Friday, however, she spent a great deal of time being artistic and crafty. The wall which houses her room entrance is three-fourths glass, and is now painted in a couple of themes. Her glass door displays a floral design welcoming visitors. The remainder of the glass is filled with an angel and the words "SJA ANGELS", so all there is no mistaking where she goes to school. The window overlooking Forest Park informs the outside world that MB is the current resident. She also has a drawer full of projects in various stages of completion. The inside of her room is starting to take on personality with
various posters designed by her sister Barbie and a singing,
flopping bass courtesy of Uncle Jeff Teckman. I am sure the
decor will continue to take on the look of a teen's room and not a
patient's room in the coming days. Her four visitors per day have consisted of her sisters, parents, and Uncle Jeff. She has waved and blown kisses to her little brother William through the glass. Thank you for the wonderful cards, flowers, plants, CF contributions, masses, and prayers we have received on behalf of Aunt Joanie. Tuesday's services included a wonderful tribute to Joan and a beautiful baptism of Nate. We continue to be blessed by all of you by your acts of love and kindness. God bless you all, 9-6-00 Mary Beth achieved a milestone today by completing her seventh and final chemotherapy treatment in this process. To put it in perspective, in the past seven days, she has received the equivalent of 28 times the amount of chemotherapy drugs that she has previously received once every three weeks in prior treatments. Although she is very tired and still nauseous, she was able to eat a small portion of cereal today which has stayed with her. She is feeling so much better this evening than she has felt since before the weekend. Her back pain is gone, she is more awake, and is anxious to get her transplant on Friday. I am relieving Sheila tonight by spending the night with MB. Her greatest challenge tonight may be to prevent me from snoring, something she tells me I did over the weekend when I slept in her room as well. She reminded me that the rule is that I must sleep on my side or the Kleenex box will come flying my way! There are several new additions to her room, including candid shots of three of her favorite little guys, her brother Will and her cousins Nate and Clayton. There is also a picture of her sisters Barbie and Heidi with her friend Jenny taken on the field on Monday night at the TransWorld Dome before the Rams victory, and a wonderful card made by her former kindergarten companion Megan Sheahan which brought the biggest smile of all. She also has a poster of Cardinals 2nd baseman Fernando Viņa personally autographed by him when he visited her today. Yes, the look of a teen's room is starting to take shape. Uncle Jeff Teckman and Aunt Patti Haffner have become regulars on the visitors circuit and are always good for a laugh. Mary Beth appreciates all the email and calls and promises to return them when she is feeling better in the coming weeks. To her fellow freshman, she wishes she too could wear a goofy hat with you this week. She is there in spirit with you and sends her love to all. Thank you for your kind support, especially with those gestures that make our lives easier, and thank you most of all for your prayers for MB. Thank you and may God bless you, I had to wait until Mary Beth fell asleep tonight before posting this message because she was dominating her laptop by responding to some of the countless emails from her new SJA Angel friends whom she will meet when she returns back to school. They are all asking when this day will occur, so I will try to give it my best estimate. MB received her stem cell transplant today and is doing very well. Today starts from 2 to 4 weeks of continued isolation in the hospital before she is released to go home. After she gets home, she will not be allowed to go back to school until her blood counts return to an acceptable level. This could take another 4 weeks, but may be sooner or longer. So . . . she will probably be back gracing the halls of Saint Joe at around Halloween. She has already discussed ideas for her costume this year. She received her transplant around noon today and slept until 5 pm. When she awoke, she had the most energy she has had since her chemotherapy treatments started last week. She ate some dinner, drank a Pepsi, watched the news, and grabbed her laptop. To her fellow SJA Angels, she really appreciates all the support she has received via email and can't wait to see you all and as she puts it, "be a normal 14 year old." Thank you all for your continuous prayers for Mary Beth's full recovery. From the looks of things, they are being answered. God bless you, Well, what a difference two days makes. MB was full of energy on Friday evening, but as expected, the side effects of the chemotherapy drugs are starting to catch up with Mary Beth's body. Mary Beth is now on a diet of ice chips and is receiving her nutrition intravenously. She simply can't eat because of irritation of her entire digestive tract. As of midnight Friday night, she was placed on fluid restrictions. She is limited to 2.5 liters of fluids per 24 hour period, including IVs, medication, blood transfusions, and what she consumes by mouth. With all she receives intravenously, the amount of ice chips is very limited. She received increased pain medication so she isn't feeling the effects of her treatment. She had some fun yesterday and was wearing her crab hat from St. Joe after it was delivered by some of her friends. Fellow SJA freshmen Christine Marino, Gerilyn Goeddel and Liz Stapleton were joined by Adrienne Dybus by visiting her through the glass. They delivered her hat along with get well wishes from all of her friends at SJA. This morning, she spent some time responding to email. She tried to do some reading but was too tired to do it. She wants you all to know that she is smiling a lot and she appreciates all the support, thoughts and prayers. God bless you, Please excuse my absence the past few days in posting updates. Mary Beth is doing "Great" according to Dr. Shenoy, her wonderful head oncologist. This was very comforting to hear on Tuesday because we have no point of reference. She is still experiencing occasional nausea, the breakdown of her digestive tract continues, and she continually fends off fever, but she remains very positive and has enjoyed having Sheila as her roommate this week. She is extremely tired and has no immune system until the transplanted stem cells commence their duties. Mary Beth remains on restricted fluids and her diet remains ice chips and Popsicles. Today, she joined her retired Grandpa Ricken in becoming a firefighter. She became an honorary firefighter for the city of University City, MO as the chief came to visit and bestowed her with that honor. She joins all of us in expressing her excitement and gratefulness to all who have helped (and continue to help) this week in preparing her new room and Will's new room at home. A group of Mary Beth's Angels descended upon our home this week on Tuesday and today both rooms were finished being painted. With input by Barbie, who spent the majority of Tuesday night with MB, her new room is taking on the look and feel of her personality. We can't express ourselves adequately in letting all of you know how blessed we are to have you. Each and every day, we continue to receive your gifts of love, thoughtfulness, caring, sharing, and prayer that mean so very much to us. Thank you and may God bless you, Mary Beth has been sleeping the majority of the past three days because her blood counts are still extremely low. Her doctors expect her stem cells to start generating new blood cells early this week. In fact, her counts are starting to creep up slightly now. Other than bathroom visits, showers, and physical therapy, she has remained in bed with two exceptions. Yesterday, her Aunt Ellen Norburg from KC visited her by standing in Forest Park, calling on her cell phone, holding up a poster and waving to Mary Beth's 9th floor room. MB ventured to the window seat for the conversation and to wave. Ellen could not come to her room because she wasn't feeling 100% healthy. Mary Beth also spent some time in the window seat watching the Great Forest Park Balloon Race yesterday. This was especially meaningful to MB because we received a phone call from our friends Joe, Shelby, Ashley & Alexa Nusrala who participated with their balloon in the race. The Nusrala's were carrying a banner on their balloon stating that they were Flying for Mary Beth with a purple ribbon on it. While we couldn't determine which balloon was theirs because of distance, MB was smiling just knowing it was out there among the 70 contenders. Thank you all for your continued support. It is wonderful seeing Mary Beth's smile when she hears about everything that everyone is doing. God bless you, The effects of the high doses of chemotherapy drugs continue to stay with Mary Beth, although she spent the majority of the day today awake and alert. She remains very weak due to the side effects and a very low blood count. Her upward movement on Sunday of her white blood cells was offset by a downward move on Monday, followed by a slight increase today. The roller coaster continues. Her doctors are still very optimistic that her stem cells will be working very soon. Mary Beth insisted on having all of her pain medication turned off during the past couple of days and tells us she is no pain. This narcotic was adding to her drowsiness and gave her blurred vision. She told us that she would rather be in some pain than to have a narcotic being pumped into her that causes her to experience the side effects. The three weeks of seeing the same four walls is starting to make her a little stir crazy and she is anxious to get out and on with the some normalcy. She continues to feel the generosity of support, especially spiritually when she hears about all the prayers and daily rosaries being said for her and for her friend Rachel Baumgartner. Thank you and God bless you, Great News!!! Mary Beth is coming home tomorrow! Her white blood count tripled overnight and she will be released to come home tomorrow. When she checked into the Bone Marrow Transplant Unit three weeks ago tonight, the doctors informed us that she would be in isolation from 4 to 6 weeks. She surprised all of us by doing so well. Normal white blood counts are between 7 and 25, so when we were informed this morning that her white blood count was 1.5, we were optimistically thinking she could be released by the weekend. When her healthcare professionals informed us that her stem cells had engrafted and that she could come home, we were all crying tears of joy. Today, an entire troop of angels descended upon our home with cleaning supplies in hand. I was afraid to stand still for fear of being wiped down with Pine Sol or Clorox water! Her room and the rest of house from top to bottom is spotless. We can't thank all of you enough for your help while Mary Beth has been isolated from society for these past three weeks and for the support we have received during the past 11 months of her battle with cancer. Mary Beth will have limited visitation rights at home, but is very excited to get here and give William his first hug in three weeks! She is proof positive that the power of prayer is immeasurable. God bless you, In preparation for Mary Beth's journey home, she was taken off the antibiotics yesterday which she had received during her stay. Afterward, she developed a fever which lasted until mid morning this morning. She will not be coming home today, but rather tomorrow evening or Saturday morning, provided she gets the okay. While this was deflating for MB, she said she would rather stay a few more hours than have to return because of a problem arising after she was home. Her white blood count nearly doubled overnight to 2.9, and all other indicators continue to climb. She is very much looking forward to sleeping in her own bed again. Thank you for your countless gifts of love. God bless, Mary Beth has spend a couple of frustrating days waiting to go home. Each of the last three evenings she has developed a fever which dissipates during the day. She has to be fever-free for a 24 hour period in order to be released. The waiting game continues. She received a surprise last night when Elizabeth Gelpi, her best friend from Kansas City appeared in her room. She was revitalized by the visit and smiled and laughed more than she has in the past 3+ weeks. These laughs and smiles will continue to increase in frequency as soon as she is allowed to change her environment. We ask that you please say a prayer as you read this and ask for Mary Beth's quick release from the hospital. Thank you for your continued support. God bless you, Aunt Joanie told Sheila that she would take care of Mary Beth shortly before she left us. Today is Joan's birthday and Mary Beth is going home! Thank you all for your support! God bless you, Life in the Ricken home is getting closer to normal, whatever normal is. We are all happy to be back under one roof. William is delighted he has his "Mary Bethy" back and is thrilled to have Mom driving him to and from preschool. Mary Beth loves her new room and wants to express her heartfelt thanks to all who assisted in the process of readying our home for her arrival. Barbie and Heidi are very happy to have someone other than their Dad to look at. Sheila is ecstatic to be back in charge of our home and you won't find anyone more pleased than me that we are together again! Mary Beth's nausea is starting to dissipate and she started doing homework yesterday. She is anxious to get back into the school routine full time and can't wait to get back to St. Joe and feel a part of it. She is trying to do her part by selling raffle tickets for $5 per book of six to benefit the SJA Auction. If you would like to help her out and have a chance to win $1,000 in cash or a $250 entertainment package on Wednesday, October 4th, you can email her sister Barbie at barbie@ricken.org. Barbie, a wannabe St Joe Angel, is helping Mary Beth since she can't leave the house to sell and doesn't feel up to making phone calls yet. Barbie will take your order and process the chances by next Tuesday. Just let her know how many books you would like and send a check made payable to Gerry Ricken to 43 Chaminade Dr., St. Louis, MO 63141. She will make sure Dad gets the money to SJA on time along with your completed chances. She needs your name, address, phone # and the dollar amount if you are so inclined. Barbie wants MB to feel like she is contributing even though she hasn't been able to participate in person. Thank you and God bless you,
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The
following page contains updates regarding Mary Beth's progress for
September of 2000.
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