December 4,2007
Dear Family and Friends,
It's been 10 months since our last update. Madison continues to be cancer-free, thank God! She is enjoying 5th grade, recently finished soccer and will begin basketball in January.
For those of you who are following her progress and journey...our family has taken a tremendous leap of faith this past summer. We haved moved to Germany!! We seized an opportunity through General Motors after much soul-searching...and decided to once again, pack up and head 20 miles north of Frankfurt, Germany, for a 2-year stay. We plan to return to Michigan after our contract ends. We arrived in Kelkheim-Ruppertshain in August, just 4 months ago. We're finally feeling settled in and the family is adjusting to life in a foreign country...lots of changes.
Our travels the past few months have included trips within Germany and to Paris, France, and Barcelona, Spain. It's interesting visiting other countries and learning about new cultures.
We thank you for your continued prayers--for Madison--and also for the thousands of children fighting cancer around the globe. God bless!
February 17, 2007
Wow! Another 14 months has flown by since our last update. Praise God, Madison continues to be the picture of health. She is enjoying 4th grade, cheerleading and basketball. Thank you, family and friends--for your continued faithfulness in prayer. Please remember to pray for the thousands of children who are still battling childhood cancer. God bless all of you! November 10, 2005
Dear Family and Friends
It's been 14 mos. since our last update...thanks for your patience. We are all doing great!!! Madison is the picture of health, praise God.
In third grade now, age 9, Madison continues to amaze us with being totally cancer-free for 5 COMPLETE YEARS!!!!! She is technically "in remission" now. We feel like a cloud has been lifted--and life is wonderful.
This past Labor Day weekend, Sept. 3, 2005, we celebrated Madison's miracle with a huge cancer remission party at our home. 200 of our family members and friends were present to help us celebrate.
We rented 2 big tents, had tons of yummy food, 2 huge moonwalks, popcorn, cotton candy and snowcone machines, and a DJ to top it off. Madison and her guests even enjoyed singing Karaoke. The weather was perfect--we couldn't have asked for a nicer day...God was surely smiling down on us. In lieu of gifts for Madison, donations were made to either the Make-A-Wish Foundation of MI or the Sparrow Foundation, Pediatric Program Fund, in Madison's honor. We are happy to announce that Make-A-Wish received $1000 in donations, and Sparrow hospital received $500. THANK YOU FOR YOUR GENEROUS DONATIONS!!! Please know you are helping to brighten the lives of other critically ill children.
Besides wearing hearing aids full-time due to her high frequency hearing loss (from chemo), Madison shows no other after-effects from her cancer treatment. We are very fortunate.
Madison excels in school and is currently doing 2 types of dance--jazz and lyrical. She also likes gymnastics. We are continuing her bloodwork twice a year, despite the oncologist's once-a-year recommendation. She is due back in December.
Thank you, everyone, for your continued prayers, love and support over the years... I'd like to share one of my favorite quotes in closing: "The world is full of suffering...It is also full of the overcoming of it." --Helen Keller September 26,2004
Dear Family and Friends-
It's been 9 months since our last update. Thank God, for continuing to bless Madison with perfect health.
Last month Madison's AFP was 3.8--which is within the normal range! She is due with CT scans in December.
Madison is thriving in 2nd grade. She likes her new teacher and is doing well. This fall, Madison is also swimming in a competitive swim league. Words cannot describe the joy we feel as parents to watch Madison competing at swim meets. Since most of the swim parents don't know Madison's history, they probably think she's just another 8-yr-old swimmer...but for us, secretly, we are overjoyed every time we watch her compete. It sure is hard to believe that she is the same toddler who was clinging to life just 4 years ago. And now to see her thriving is truly a miracle.
And speaking of miracles, remember our Hartland friend, Evan? When we met him last fall, he was undergoing treatment for 2 types of cancer...He is now CANCER FREE! Thank you, God, for answering our prayers.
Our 11-yr-old, Ashley, has a friend at school, Lisa, who is battling hepatoblastoma for the 2nd time. Please keep Lisa in your prayers and thoughts.
Thank you for continuing to send Madison messages on her website. It's heartwarming to read them.
Hello and Happy Holidays to everyone!
WOW!! Has it really been one whole year since our last update?? Amazing how time flies...Madison is, once again, the picture of health, praise God! Last week Wednesday Madison had a 6-month visit with her oncologist--her AFP was 3.6! We are following up with CT scans and additional testing in January. Madison's bloodwork was all normal, except for the albumin and bilirubin--both of which were slightly above the normal range. We're scheduling additional testing with a gastronologist who specializes in liver function--hopefully within the next 6 weeks. Our oncologist reassured us that since the AFP was normal we should not be alarmed. However, due to Madison's extensive liver resection, her doc feels it's necessary to follow up with a particular scan (we don't know the exact name yet) to ensure that her liver is functioning properly.
Our family is finally getting settled in our new home--located in Hartland, MI. Steve is, thankfully, finished commuting to Troy, and is enjoying his 45-min. commute to Pontiac. It sure beats the 1hr-45min. (one-way) commute he previously had.
Mikayla, 13yrs., is enjoying 7th grade at Ore Creek. Between flute lessons, basketball, swim club, and babysitting, she's keeping busy.
Ashley--almost 11--is enjoying 5th grade at Farms Intermediate School. Her first year out of the elementary setting has proved to be quite challenging. Switching classes, different teachers--she is blossoming! She proudly displayed an honor roll certificate recently--3 A's and 2 B's! She, too, is involved in basketball this winter, as well as hip-hop dance.
Madison is repeating first grade at her new school--Village Elementary. After much speculation, prayer and testing, we thought it best to give her the benefit of an extra year to grow and gain confidence. We are pleased with her progress so far. Madison continues to wear her hearing aids daily. She is taking gymnastics this year and loves it!
Caden--almost 2 1/2--is enjoying his new surroundings. When he's not getting into his sisters' make-up, he can be found playing dress-up, dolls, house or school with them...we figure we can get away with this for a while!
May all of you enjoy a blessed Christmas with loved ones. We continue to pray for our cancer friends everywhere. We ask you to lift in prayer our newest friend, Evan, whom we met here in Hartland. He's being treated at the University of MI for 2 different types of cancer. May God shower his family with strength and grace to endure this trial. We are praying for another miracle!
Blessings to all! December 6, 2002
Dear Family and Friends:
It has been 3 months since our last update, and 6 months since Madison’s last exam and bloodwork. I didn’t think we could wait that long, but we did it! Madison finally got her poke this week—her AFP is 3.0!!! Praise God, for our baby’s continued perfect health.
Our family is doing well. The girls are all loving school and baby Caden is keeping Mom forever on her toes…getting ready for the holidays…wishing all of you a very blessed and peaceful Christmas.
For those of you who’ve been following our family’s travels…it’s time for the F.T.s to move on. Steve’s work in Lansing is done. He will be moving to Troy, MI as manager of air quality for GM’s North American Operations. Our family will be relocating within the next year or so.
We continue to pray for precious children everywhere with cancer. We ask you to pray for our new friend, Ethan, age 2, who also has hepatoblastoma. Ethan lives in Winnipeg, Manitoba Canada. May God blanket Ethan’s family with grace, strength and love.
A friend of mine gave me the December issue of Good Housekeeping magazine. Inside is a heart-warming story of another little girl, Dana, from Louisville, KY—who also had hepatoblastoma, and is now cancer-free!
THANK YOU for your continued prayers…God heard and answered them.
September 1, 2002
Dear Family and Friends,
It's been 6 months since our last update. Our family enjoyed a wonderful summer and now it's back to school.
Madison continues to amaze us with her perfect health! She began first grade on Aug. 7, and loves going to school all day long. Madison started soccer practice last week and loves it! I can hardly believe she's 6 years old and I miss her smiling face during our afternoon picnic lunches in the family room. But my husband says it's time to let go...let her make her way in the world of first grade.
Madison's latest scans in May were clean and her AFP was 3.? Funny, it's been so long now I can't remember the exact tenth! Her doctors continue to marvel at her and have told us to return for a visit in December...
Mikayla almost 12, began middle school (6th) last week. I've noticed a definite maturity about her now that she's entered a whole new atmosphere...she's decided to take band and looks forward to learning to play the flute.
Ashley, age 9, began 4th grade. She loves her new teacher and is currently studying her lines for a part in the drama club's RUMPLESTILTSKIN.
Caden celebrated his first birthday July 15...and began walking the next week! He is so much fun, so much work and such a blessing.
July 27, 2002 marked the 3rd anniversary of Madison's diagnosis of cancer. She celebrated the day by playing with her best friend, Annie.
August 24, our family and friends participated in the Walk For Wishes, to benefit the Make-A-Wish Foundation of MI. With 500 walkers, this event raised over $50,000. While our team, Madison's Hope, raised the most donations at $5,000,we are most grateful for and inspired by your continued support. Thank you for sharing in the power of a wish.
We continue to praise and thank our Heavenly Father for Madison's excellent health. For nothing is impossible with God...
WOW!!!Has it really been 8 months since our last update? Well, I guess the reason for our delay is baby boy, Caden--who is just shy of 8 months old now! We have been enjoying our new bundle of joy, each of us...the girls still smother him with sisterly love daily. Mom is grateful for the extra attention showered on Caden--and very proud that her daughters love their baby brother so much.
MADISON continues to be the picture of health, praise God! We are amazed every single day that God chose to grant us a miracle in healing our baby girl. Please continue to praise Him and thank Him for this gift.
In February, 2002, Madison's AFP was 3.4!!! Her physical exam went well--lots of smiles from Dr. Scott, her oncologist, too.
Madison is enjoying kindergarten very much. She continues to make progress in all areas and loves her teacher, friends and school.
We are in the process of obtaining hearing aids for Madison. As a result of the chemo, she has experienced high frequency hearing loss. Because the nerve was damaged this is permanent. Madison's base hearing, however, is normal. The audiologist recommended higher tech digital hearing aids, rather than standard ones. The digital aids offer more flexibility in frequencies. We hope to have them within the next 4 weeks or so.
Madison's Grandpa George will be undergoing heart surgery sometime soon. We ask that you keep him in your prayers. We trust that God will watch over him and guide the surgeons' hands. We will try our best to keep you posted.
THANK YOU all very much for your continued faithfulness in prayer for Madison's good health. We have been blessed beyond measure. We are finally updating the website after several months-and we apologize for the delay…
Madison continues to amaze us each day with excellent health and spirits! All three girls are enjoying their summer break by sleeping in, relaxing by the pool and having playdates with friends.
Madison's latest bloodwork and CT scans in June were excellent-her AFP is 3.1-PRAISE GOD!!!
On July 3, Madison underwent minor surgery for tonsillectomy and adenoidectomy. The surgery was a success. Throughout the course of the day and into the evening, however, Madison's vomitting (stained with blood) became a concern. At 9:00 pm, her ENT Dr. recommended additional immediate surgery to determine the source of Madison's bleeding. At approx. 10:00 pm, Madison underwent a second surgery. Dr. Goebel located a blood clot near the adenoid site, removed it and cauterized a blood vessel. By 12:15 am Wed., we were back in our hospital room, ready to call it a night!!! Madison was released today, July 4th, eager to be home with her sisters and parents. Her spirits are good, she's slowly regaining her appetite and was actually dancing around the living room with Mikayla and Ashley.
The surgery was performed at Sparrow Hospital, Lansing. Our care at Sparrow was outstanding-we especially want to thank ENT Dr. Eric Goebel and Anesthesiologist, Dr. Jim Ploucha, for their expertise, kindness and concern. We are blessed to have such awesome people take care of Madison. Our nursing care (Diane, Linda, Renee, Melissa) was equally outstanding. PCTs (Monica and Jameson) thank you!!
Kathy is nearing the end of her pregnancy-10 days until her due date-and feeling well. Many of you have asked if the baby is a boy or a girl? We want to be surprised-so we honestly do not know! Like Madison tells everyone, "Even if it's a girl, we still have to love it!"
Madison is doing great! Madison continues to be feeling great-we are so blessed and grateful…Her latest monthly bloodwork was normal and her AFP (alpha fetoprotein) level is 3.6!!! Thank you, sweet Jesus! Madison has been attending preschool and dance regularly and enjoys both. We can tell she's feeling excellent…
Madison's next scans should be sometime in February.
For those of you who may not have heard our other GOOD news-our family is EXPECTING A NEW BABY-JULY 14!!!! We are all very excited. Kathy is feeling great and Mikayla, Ashley and Madison can't wait for the baby to be born. Once again, we ask for your prayers for a healthy, safe pregnancy and delivery. This is another blessing from God, a gift of new life. We continue to place our trust in Him as we anticipate our second miracle this year!
Madison has had a very busy and fun-filled month. Praise God!!! She is attending preschool with her friends, going to ballet once a week and enjoying playdates. The recent 2 snowdays have also provided Madison and her sisters with new entertainment-SNOW! It's been almost 2 years since Madison has enjoyed the privilege of sledding down a snow-covered hill…these are precious moments.
Last weekend, Madison, Ashley and Mikayla attended the MSU Pediatric/Oncology Clinic's Annual Christmas Party. The girls had a ball. It was difficult for Steve and me, though, missing several of our friends-who've lost their children to cancer this past year. In addition, there are a few kids whose cancer returned after being cancer-free for just a few short months...We feel tremendous pain for our friends, and ask all of you to please remember in prayer ALL families who've lost their precious babies to cancer. We continue to accept our gift of healing from God and live our lives not "one day at a time" but "one hour at a time".
Madison's next appointment for bloodwork is Dec. 18.
Madison enjoyed her Thanksgiving holiday this year. This was in far contrast to last year when we were in the hospital watching football games from the hospital room. We went to Detroit for the day and ate a great meal! We have soooo much to be thankful for this year. It was truly a special time for us to be together.
The week of November 20th, Madison was in the clinic for a transfusion of pentamidine (her monthly antibiotic infused intravenously - since she refuses oral medications - this is for preventing pneumonia based infections only) and blood draws. Her bone marrow is starting to improve dramatically, Madison's hemoglobin was 11.1 (the highest without a blood transfusion since diagnosis), ANC was 7,000 + (remember these are the soldiers that fight infections) - normal values are around 9,000 - 10,000, and, Madison's AFP remains at 3.4 (tumor marker value) !!!!!!! We are so happy. Madison was in the hospital on November 21st for CT scans. Results of the scans look good - no evidence of nodular mass! November 22nd Madison wasn't feeling well so she went to Dr. Mora's office for a checkup. She complained of a sore throat and earache. Madison needed to be put on an antibiotic. Because she refuses oral meds. - she had to have several shots of rocephin over the next few days. Again she was a trooper with the shots … preferring that over drinking medications! On November 24th and 25th Madison and sisters enjoyed putting up the Christmas stuff around the house. Santa will be coming soon!
Madison is scheduled for CT scans on November 21, 2000 for her 3 month check up. Madison continues to enjoy going to school and dance class. This week she had Anne over to play. She is at the stage where she is changing her clothes 100 times a day. She will go from shorts to a formal dress in a matter of ten minutes - and - there is no arguing with a "chemo - kid" - she wins everytime - strong willed and determined to win every battle! These we relish and enjoy! Family and Friends of Madison:
Thank you for your patience while awaiting our update on Madison. Much has happened since our last entry. Following is a brief summary of Madison's course of treatment since March 2000.
March 20 - Liver and partial I.V.C. resection at University of Michigan, Ann Arbor, Michigan.
March 29 - She is hospitalized at Sparrow Hospital, Lansing, for staph infection following surgery at U of M.
April 18 - First round of post-operative chemo begins.
May 22 - Madison's blood counts recover in time for her to enjoy a much-anticipated trip to Walt Disney World, Orlando, Florida with her family!
June 5 - Second round of post-operative chemo begins.
June 23 - END OF CHEMO!
July 17 - CT scans of liver - CLEAN!
CT scan of right lung reveals 3 questionable spots.
August 16 - Madison spikes 106o fever and is hospitalized in ICU just two weeks prior to her surgery. Blood cultures reveal line sepsis (a blood infection in her broviac line). Treatment with antibiotics for 2 weeks fails to clear infection - broviac line removed.
September 1 - Right thoracotomy (lung surgery) performed at Sparrow Hospital, Lansing, by Dr. Hirschl, U of M surgeon who performed Madison's liver resection. This surgery involved removing questionable spots to determine whether spots were scar or active cancer.
September 7 - Biopsy report revealed lung spots were NOT MALIGNANT!
September 13 - Check up with oncologist and blood work (AFP is 4.6). Madison's counts have fully recovered from the effects of chemo, except for her hemoglobin which may take 6 months to increase. Madison is given the green light to return to preschool and ballet class with her friends!
October 18 - Monthly blood work to check Madison's AFP (alphafeto protein) which is a liver tumor marker. Remember that this number must stay under 15. Her 10-18-2000 AFP is 3.4.
Madison now attends monthly visits to the MSU Hematology/Oncology Clinic and Infusion Center where her blood is drawn and AFP level checked and pentamidine antibiotic infused intravenously (since Madion refuses all oral medications). Madison then visits her oncologist for a check-up. Additionally, CT scans are performed every 3 months. Free from her broviac line, shots and chemo, Madison is truly enjoying her excellent health. Her new hair growth looks adorable! Isn't God great?!
Great News Today - - Madison's AFP (the tumor marker) is only 10.2 !!!!! When first diagnosed her AFP was 832,000. Normal AFP levels range from 0 to 10. It appears we are on our way to what we've been praying for ….. an AFP that is normal and CLOSER to a life without cancer - - our goal. We recognize that more work is ahead of us … more CT scans to verify the status of the mets. on the lungs and the IVC/right atrium involvement….AND more Chemo …. Her protocol calls for a minimum of two rounds of chemo after surgery, however, this will all depend on future CT scans and consistent AFP levels around or below 10. Please keep her in your prayers so Madison can be CHEMO and CANCER free!
Today Madison started the 8th round of chemo. She has been in good spirits, despite the horrible side effects. Eating a red Popsicle and watching Shiloh (a movie about a dog) have been the highlight of the post chemo blues.
Well, we had a big scare last Wed. the day we were discharged from U of M. Six hours after arriving home, Madison spiked a 105 F fever and began shallow breathing. Immediately we called U of M docs along with our own and raced to Sparrow Hospital (much closer than U of M). Madison's heartrate doubled...we were very scared. Thankfully, the chest x-ray was clear--no pneumonia...several hours later and a CT of her abdomen, also clear--no abcess---we were told the blood cultures were positive--for the first time ever....apparently she somehow contracted staphaureus at U of M Hospital. Madison also began vomitting blood several times throughout Thursday. They suspected an ileus (intestinal blockage, sometimes due to abdominal surgery). To combat this, we were told to rest the tummy for a period of time. An ng (nasal gastric) tube was inserted to remove excess stomach secretions. Finally the vomitting subsided. She was given antibiotics and kept for 4 nights...They sent us home with vancomycin.
We are so glad to be home. Madison’s appetite is picking up now that she’s off TPN and can finally resume eating after resting her tummy for 4 days. The surgeons anticipate 4 to 6 weeks for Madison to fully recover from major surgery.
The surgeons will examine Madison next week and recommend restarting chemo in the near future.
Madison’s latest AFP (alpha fetoprotein) is 33. Prior to surgery it was just over 1000. At diagnosis in July, 1999 it was 832,000. Our goal is for AFP to drop to less than 10 (normal).
Madison continues to improve daily-it is amazing to watch her progression, hour by hour.
On Friday - Day 4 - Post-Op-Madison had her ng, breathing and chest tubes removed!!! What a happy day this was. We finally heard our baby's voice (actually a whisper) for the 1st time prior to surgery. Tubes removed, Madison began to communicate and interact with us. Previously she would nod or shake her head to respond.
By Saturday -- Day 5 -- Post-op-- Madison had her Jackson-Pratt drain (abdominal draining tube) removed. Also removed were the catheter and nasal canula (giving oxygen). Madison finally sat up in bed and ate a popsicle! She also enjoyed a short visit from her sisters, Mikayla and Ashley.
Sunday - Day 6 - Post-op--We happily left PICU (peds intensive care unit) and were placed in a private room on the hem/onc (hematology/oncology) floor. Madison's pain meds were gradually decreased.
Monday - Day 7 -- Post-op-Madison enjoyed visiting the playroom-even painted a wooden reindeer and bunny. Wanting to venture outside her room, we carried Madison around the hospital several times. Pain meds were seldom needed…hurray!
Tuesday - Day 8-Post-op-Madison is doing great. Freed from I.V. poles for the entire day, she enjoyed painting, walking a few steps and riding (slowly) a Barney tricycle around her floor. We anxiously await our discharge TOMORROW, Wed., March 28.
Madison's surgery was a huge success! The surgery lasted 9 hours. Two amazing surgeons, Drs. Hirschl and Arca, from Uof M-successfully resected the right lobe of the liver, part of the inferior vena cava, the gallbladder and a portion of Madison's diaphram, which was also impacted with tumor. Madison was then taken up to PICU (peds intensive care unit), where she will remain until she is extubated (breathing tube and ng (nasal gastric) tube removed). From PICU Madison will go either to the peds floor or the hematology/oncology floor-whichever has a vacancy. It is now 48 hours post-op and Madison is stable and improving constantly. Pain management is definitely our priority as she has a continuous morphine IV drip. Madison is coherent now, very much aware of her surroundings. Steve and I look forward to hearing her sweet voice soon! It is difficult to remain patient-she really wants to speak…The extreme swelling has finally subsided and Madison is beginning to look herself again! God is soooo good…So many of our prayers have been answered. He guided the hands of the surgeons and kept their minds focused, their stamina strong. Thankfully He placed many highly-skilled, gifted people, within our path; doctors and nurses alike. Today is definitely one of our happiest… Madison finished the 7th round of chemo the end of February. The 8th round of chemo was delayed and SURGERY has been scheduled instead. Madison will be at the University of Michigan - Mott Children's Hospital, 1500 E. Medical Center Drive, Ann Arbor MI 48109. She is scheduled to have surgery Monday, March 20th. The surgery is scheduled for 10:45 am and will consist of removing the right lobe of the liver (the primary location of the tumor), gall bladder and potentially the tumor/clot-impacted inferior vena cava (IVC). Surgery is expected to last 5-6 hours. Dr. Hirschel, from U of M, will be the primary surgeon leading the entire team. Her predicted stay in the Intensive Care Unit will be 2-4 days following surgery then transferred to a private room a total of 7-14 days.
Madison has been the strongest this week since her diagnosis July 1999. Her ANC (ability to fit infection) is over 3,000. Her AFP (liver tumor marker) is down to just over 1000-from 800,000 at diagnosis! Madison has really enjoyed the beautiful spring days playing outside, riding her bike and Barbie jeep, interacting with friends, etc. It has definitely been a blessing from God. Madison is fully aware of the surgery-to remove "the ball in her tummy". She actually hugged me and shouted "Oh, thank you, Mom!" as I explained in simple terms what the surgery entailed. We've reassured her that she'll be getting the "sleepy medicine" beforehand. Her progress in 7 months is incredible, and we've been working toward the goal of surgery since the diagnosis. Thank God the day is finally drawing near. Once again, we rely on God to guide the surgeons' hands, while we take this new leap of faith. We thank all of you for your continued prayers, support and love!
Madison is still in the hospital. She spiked a 103.5 F fevor on Thursday - - so she has to stay in the hospital a minimum of 48 hours to rule out septic shock (an infection of the blood). The fevor is probably a chemo related reaction. Her temperature has normalized and she may get out on Saturday afternoon. Chemo continues to be difficult for Madison ... frequent vomitting and physically draining. She still keeps her spirits up. She beat Kathy at the Candyland game in the Pediatric's Playroom. Keep her in your prayers. Madison is still in the hospital. She spiked a 103.5 F fevor on Thursday - - so she has to stay in the hospital a minimum of 48 hours to rule out septic shock (an infection of the blood). The fevor is probably a chemo related reaction. Her temperature has normalized and she may get out on Saturday afternoon. Chemo continues to be difficult for Madison ... frequent vomitting and physically draining. She still keeps her spirits up. She beat Kathy at the Candyland game in the Pediatric's Playroom. Keep her in your prayers. Madison was admitted into the hospital on Wednesday for the start of the seventh round of chemotherapy. We hope to have her out by Thursday night so she can participate in the Make-A-WishŇ radio-a-thon fundraiser. They want to interview her on the radio!!!! Since the last update Madison has been in for two blood transfusions and one platelet transfusion -- -- additionally, she has been admitted and sedated for CT Scans, MRI and MRA imaging, an echo-cardiogram and an audio brainstem response (ABR) test. The results of these tests are promising. The tumor in the right atrium of the heart has gone from 3.28 cm to 2 mm. It appears that only one tumor remains embedded in the lungs, compared to 6-12 on each lung initially. The tumor on the liver decreased from 15x15 cm to 2x4 cm. Keep the prayers coming … we are going to get there!!!! Madison continues to stay strong in spirit. She has had a few playdates with Emily and Annie … playing together as they have in the past. Additionally, Madison's appetite came back really strong right before this round of chemo. She has been gobbling down Mac-N-Cheese, pancakes and lots of chocolate. Madison was admitted to the hospital on Sunday, December 26, 1999 to start the 6th round of chemotherapy! The chemo protocol started today at 4:00 AM with 4 hours of normal saline hydration with magnesium sulfate and potassium chloride. At 8:00 am she received her “kiddy cocktail” - - a combination of zofran, pepcid, benadryl, reglan and decadron to help counter the nausea effects of the chemo. Then she received another hydration of normal saline with magnesium sulfate for 1 hour. Following the hydration, Madison’s blood pressure was monitored for a baseline before she was given a new drug called “amifostine”. Amifostine is part of an experimental protocol, which protects the “good cells” from the impact of the chemotherapy drugs. Studies have shown that this drug can coat the good cells and prevent them from being attacked by the chemo while the chemo attacks the cancer cells. While the amifostine was given she had to lay flat and her blood pressure was monitored every 5 minutes for 1 hour. If her blood pressure drops by 20% then the amifostine injection is stopped. Thankfully, Madison has not had any problems with her blood pressure during this procedure. Following the amifostine, the actual chemotherapy drug called “cisplatin with mannitol” was given by IV over 4 hours. Madison vomited several times during this - - even though she had the kiddy cocktail. This whole procedure ended at approximately 3:30 pm - - almost 12 hours from the time we started. After her chemo drug was finished hydration with normal saline continues until Tuesday at 11:30 am. She has been given the kiddy cocktail every 6 hours to help battle nausea - - which causes her to sleep most of the time. However, around 9 pm she wanted to go down to the cafeteria – so we picked up the big wheel from down the hall and rode to the café - - IV pump and all - - picked up some food - - came back to the room and then she feel asleep - - before she even ate anything - - such is life on chemo!
We expect to be released on Tuesday assuming all her lab work comes back favorably.
So much has happened since the last update (Dec. 10th ). Mikayla, Ashley and Madison had a wonderful Christmas Holiday -- - especially since Madison was home enjoying it with family and friends and was able to stay out of the hospital. The girls sang Happy Birthday to Jesus - - keeping the true meaning of Christmas in mind. Santa gave Madison her Bitty Baby – the one that is in the hospital with us tonight - - going through a chemo treatment with Madison. We spent Christmas Eve at Grandma & Grandpa Tomaszewski’s and Christmas Day at Grandma & Grandpa Farhat’s.
We won tickets to the Amy Grant Christmas concert in Grand Rapids ….. Madison and Ashley fell asleep near the end of the show (sorry Amy… it was a wonderful show). Madison has been in and out of the Pediatrics’ Clinic for blood work and check ups. The main interest has been her Absolute Nuetrophil Count (ANC) which has to be over 500 to ensure that she has some level of protection to fight any infections and an ANC over 750 to start the 6th round of chemotherapy. The ANC levels have had a hard time recovering after the 5th round. The chemotherapy treatments are impacting the bone marrow’s ability to regenerate white blood cells that are part of the ANC. Madison will start getting neupogen shots (this will mean 2 shots everyday – one for Lovenox and one for Neupogen) to help stimulate the growth of the white blood cells. Last Monday, December 20th Madison was sedated for MRI scans. We are still awaiting the report; however, these scans will hopefully give us more detailed images of the tumors.
The trip to Pittsburg's Children's Hospital was a total rollercoaster of emotions AGAIN. The top surgeons in the country for transplant surgery basically told us that Madison's condition did not put her in a category to receive a liver transplant - - mainly due to
the fact that she has other organs that are impacted w/cancer. Our main purpose of the trip was not aimed at transplant surgery - - it was more focused on partial liver resection or debulking of the tumor mass in the liver. However, they told us that surgery at this time would be far too risky. The tumor mass in the inferior vena cava (main artery from liver to heart) causes grave concern when it comes to an operation. They feel this would be
one of the first type of surgeries ever performed ... unable to give any odds
on the outcome. The surgery is complicated because they would have to try to
clamp off the artery from the liver to the heart and replace it.... put her
on cardiac by-pass ... remove the portion of the liver that is tumor compromised and then try to replace everything and hope that it works. Because this would be one of the first surgerys ever performed and based on the limited information they had at this time it was decided that surgery would not be pursued at this time. The surgeons need further info. to help evaluate the situation more. When
Madison is finished with the fifth round of chemo... this week... she will need a MRI, CT Scan and ultra sound of heart and lower abdomen to get the detail that may help the surgeons better assess the situation. The highlight of the trip was a meeting with one of the leading oncologist (Dr. Carr - from England) in the
country that has worked on over 1000 liver cancer patients. He had a totally
different outlook on Madison's outcome....he was very reassuring .... since
her body is responding to the chemo that we should keep the "surgeon's paws
off Madison" (in his British accent) and let the chemo cure her!!!!!!! He was a sigh of relief. He offered his services when and if we get to the point where chemo starts to hit a flat point in terms of tumor reductions....
then he would perform a localized chemo treatment program to aggressively
attack the remaining masses. So back to Lansing we go to continue chemo treatments.
The trip was somewhat overwhelming... we met some brave children. One at the
Ronald McDonald House ... a nine year old that had her second heart transplant just this past November.... a remarkable little girl ... strong and full of life --- just like our little Madison!
Madison is in the hospital AGAIN! She was admitted on Monday (Nov. 22) to start chemo-round 5. She was scheduled to go home on Tuesday evening. However, she spiked a fever (104.5 F) Tuesday afternoon, requiring her to stay in hospital for another 48 hours. Blood and urine samples were taken, then put into a petri dish to see if any bacterial cultures grow. This will determine if a bacterial infection or just a reaction to the chemotherapy drugs caused the fever. During her stay she is given IV fluids and antibiotics to counter the potential infection. All of this is done as a precautionary measure to prevent her system from going into septic shock.
As of Wed. (Nov. 24) her temperature has dropped to 98.6 F. She will hopefully be released on Thursday morning...Thanksgiving Day!!! The best Thanksgiving treat you could ever ask for … having her back home!
11/18/99 Madison was in the hospital three days this week for tests. On Monday she had routine check up with blood work. Her clinical status is improving. Her liver has shrunk to almost a normal size. On Tuesday she was partially sedated for CT scans. Results are forthcoming. On Wed. she was fully sedated for an ABR - audio brain stem response. This test determines if any hearing loss has occured. Madison has (mild) high frequency hearing loss -- due to the chemotherapy. Her AFP dropped from 21,000 to 3,980!!!! Thank GOD! Madison was scheduled to start round 5 chemo. However, her ANC dropped below 500 so now we wait and pray...Madison's voracious appetite is a GODSEND. She is making up for lost calories earlier in the month. She had her first play date with her friend Annie this week. Great seeing her out with a friend again!!!! Her spirits continue to be good.