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page 1 page 2 page 3  majestic mountains and restless seas, then paused and said "It needs one more thing". Someone to laugh and dance and sing, to walk in the woods and gather flowers, to commune with nature in quiet hours. So God made little girls with laughing eyes and bouncing curls, with joyful hearts and beautiful smiles, enchanting ways and feminine wiles. And when He had completed the task He'd begun, He was pleased and proud of the job He'd done. For the world when seen through a little girl's eyes greatly resembles paradise. If you would like to share your thoughts, well wishes and prayers with Erin and her family click here. Thank You! You can also sign Erin's Guestmap by clicking below. 
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Welcome to Erin's Place Earth...must be missing an Angel. May 27, 2007 Tomorrow is Erin's 8th birthday, go here to see her birthday "card". Erin's family misses her terribly. There really aren't any adequate words to express their pain. Curt, Kim and Christopher plan to plant a tree in Erin's honor tomorrow. Kim says the day will be a celebration of Erin's life and always remembering how glad they were to have Erin in their lives. Christopher picked out the cake, there is a pic of it on the birthday card page. So I say, Happy Birthday Erin, your family loves and misses you each and every day. I know it is an effort sometimes for Curt and Kim to get through the day, but their strength is evident. God bless them and Christopher always. Sept. 25, 2006 I am terribly sorry I have not posted before now. Yesterday evening at approximately 6:00pm, Erin became heaven's newest angel. She was at home, surrounded by her loved ones. We had all prayed she would be cured...then that she would not suffer. Erin was in some pain, but in the end the pain was not as great as it could have been. Erin was lying on the couch and one second she was earth bound, the next she gained her wings. Naturally Curt, Kim and Christopher are in tremendous pain...a light has been switched off in their lives. A small girl with a huge heart has left us grief-striken. We leave in about an hour for North Carolina. Heaven now has a tiny angel who's name we all know, Erin. Whisper her name in your prayers today and those of her mother, Kim, her father, Curt, and her brother, Christopher. I will post more when I return, I don't know when that will be. I don't know the date of the service for Erin. I thank you all for your visits to this web site, your best wishes and prayers and guest map entries. Peace be with you. August 19, 2006 My daughter and I had a wonderful time with Erin and family and arrived home safely last Wednesday. I have added new pictures here. We swam alot both in the pool and at the lake. The kids put on a show; see pictures. The girls danced and Christopher was the Master of Ceremonies. I am so glad we could make the trip! While we were visiting Erin went to clinic. The doctor felt she was doing well on the current chemo so he decided to just keep with the current treatment. While we were with her, Erin seemed great. She swam, played dress-up and had a jumping contest with my daughter among other things. However, last night I received an email from Kim and the news is not good. Curt and Kim received the results of a ct scan yesterday and it shows that the lump on Erin's head that Kim recently noticed is cancer cells protruding into her skull, there are nodules in her lungs and there is spinal cord infiltration. Erin will have radiation to her spine on Monday so she will not have neurological problems that could cause her discomfort. She is on a different chemo. The tears are many and fear is great. The family needs your prayers more than ever. I will update soon. July 24 Happy 10th Birthday to Erin's brother, Christopher! He is in the double digits now! Erin is at home taking her treatment. She has had to have several blood and platelet transfusions and has experienced pain in her legs. There was incorrect info in my last post: the chemo cycle is only 28 days, not 2 cycles. Erin has had the second chemo push and has had to have the oxycodone several times for pain. Next up is scans to determine if the chemo helped. My daughter and I are leaving Aug. 2 to visit Erin and family, can't wait! Until next time, peace be with you. July 3, 2006 Erin, Kim amd my Mom left Philly last Friday and arrived home safely. The fever Erin had was not due to a port infection. She has since ran another fever and the doctors say it is because her body is trying to fight the cancer. Before Erin left CHOP she had the first chemo treatment, an IV drip. She will have this same chemo again 14 days from the first treatment. In the meantime, she is taking an oral chemo and Celebrex an arthritis drug that is giving her relief from pain. Erin was prescribed Oxycodone also but so far she hasn't needed to take it much because the Celebrex is working. Duke did not want Erin to take the Avastin chemo because it has been given mostly to adults, not children so she is taking 2 chemos, not three. Erin had to go to Duke yesterday for a platelet transfusion; counts are low. She is due in clinic on Thursday. The 28 day chemo cycle will be given twice which takes us to the end of August. Scans and tests will be performed at that time. If needed Erin will then have antibody treatment at CHOP. Erin must be 2 weeks without chemo before antibodies can be administered so that takes us until some time in September. We are praying Erin has little to no adverse side effects to this treatment plan and that she once again achieves NED (no evidence of disease) status. My Mom is enjoying her visit with Erin and family; tomorrow I am sure everyone will enjoy a fireworks display. Will update again soon. Until then, peace be with you. Please remember Erin and family in your prayers. June 27, 2006 UPDATE: PRAYERS ARE NEEDED! Kim and Erin are currently at CHOP. Erin had further tests and scans. The MiBG scan shows multiple new cancer sites especially in Erin's legs, pelvis and skull. Most of the cancer is in the bone marrow. Erin went to CHOP to start a new treatment, CEP-701, however liver function tests showed abnomality and CEP-701 cannot be given unless liver function is completely normal. Kim met with the doctor last Friday and was given several treatment options to begin this week. The suggestion was to put Erin on the CHOP antibody treatment however antibodies will not be available until after July 5 and the doctors said Erin could not wait that long for treatment. So it was decided that Erin would begin a cycle of chemo treatment: avastin, cyclophosphaimde and vinboastine. This chemo would be given for 28 days, more tests and scans performed to see the results and then Erin would receive the antibody treatment if needed. Erin was due in the CHOP clinic at 9:30 this morning however last night she spiked a fever and was admitted to the hospital. No word yet on what this will do to the treatment plan. My Mom is with Erin and Kim in Philly and will call me when more is known. Erin is in some pain, she is limping a bit and is tired. Please pray for Erin and the entire family; put out some positive thoughts. Will update again when more is known. June 10, 2006 Erin turned 7 on May 28! Go here to see some pictures from the celebration. When Curt and Kim met with the doctor to "discuss treatment options" not alot was discussed. Essentially the family is in limbo right now. They are in contact with the doctors at both Duke and CHOP to decide the next step in Erin's treatment but nothing has been decided. Test results revealed that Erin has what the doctors call "stable disease". There was no improvement due to the second MiBG treatment nor was there increased disease. Erin still has spots of NB that light up on scans and she still has disease in her bone marrow. Prayers are needed as the family and the doctors decide what to do next. FYI: Did you know that most of the funds for cancer research are earmarked for adult cancers? VERY little money is dedicated to the search for a cure for neuroblastoma. Alex Scott was an 8-year-old girl who died from NB. She and her family founded the Alex's Lemonade Stand fundraiser. Perhaps you and your family would be interested in holding a Lemonade Stand this summer. Please go here to learn more about this opportunity to help kids with cancer. Until next time, peace. May 21, 2006 On May 9 Erin and Kim arrived at clinic at 9:15 am and returned home at 5:45pm. It was a very long day. Erin had to have both blood and platelet transfusions. On May 12 they returned to clinic and had a discussion with the stem cell doctor. The following Wednesday Erin had the stem cell infusion. It is an all day thing. All though the actual transfusion doesn't take that long she has to be monitored to ensure she does not have an allergic reaction. Curt and Kim met with the doctors recently to discuss future treatment options, I plan to speak with them today to find out what was discussed. Scans and tests are scheduled for this week, starting tomorrow. It is always an especially stressful time waiting for the results. A week from today, May 28, is Erin's 7th birthday! Until next time, peace. May 5, 2006 Spoke with Kim yesterday. When Erin went to clinic Tuesday, she had to have a platelet transfusion. She alsmost had to have a blood transfusion also since her count was at 8.6 and they transfuse at 8. There is every chance that when she goes to clinic today she will need to have both blood and platelet transfusions. If platelets are needed today, then Erin will be scheduled for a stem cell infusion next Tuesday. This is the procedure where she will be given some of her own stem cells that were purged 2 years ago when she had the stem cell transplant. Dr. Maris had stated that Erin would probably need the infusion after the second MiBG treatment. 'Course Erin has surprised us before! Scans and tests to determine how the MiBG treatment worked are scheduled for May 17; however that could change if Erin's counts do not rise. I have added one adorable picture here. Until next time, peace be with you. April 28, 2006 Since my last update Erin has had to have both blood and platelet transfusions. Kim spoke with the doctor briefly and they will see how Erin is doing today when she goes to clinic. Because of her very low platelet count she may be having the stem cell infusion soon. Overall, Erin is as usual in good spirits. I have added several new pictures here, including 3 from the recent fundraiser Curt's work did for Duke. In a previous post I got it wrong as to where the money raised is going. The funds will be split between the Pediatric Oncology and Stem Cell transplant groups at Duke. The funds will be used to help families like Erin's that need lodging, gas, phone cards, meals, etc. while their child is in treatment at Duke. Tickets sold in the raffle totaled $3,900.00. Curt's employer, Richard Wilkins, matched that total and the total donated was $8,000.00. Everyone who purchaseed tickets was treated to a BBQ dinner. The winner of the raffle won a laptop PC. The laptop and BBQ were donated by Mr. Wilkins. So...THANK YOU Mr. Wilkins and a huge THANK YOU to all of you who purchased tickets! As I said before, you are all angels! Erin was on hand to draw the winning raffle ticket. A representative from Duke was at the drawing and was presented with a check by Mr. Wilkins. (The lovely dark-haired lady in the second fundraiser picture is Kim, who has until now successfully avoided having her picture on this web site.) Other new pictures include eggs, dogs and strawberries. Hope to speak with Curt or Kim this weekend concerning today's clinic visit and will update then. Peace. April 13, 2006 Erin and Kim returned safely from CHOP and are currently at home. All went well. Erin's Grandmother was a great help, thanks Mom! I say all went well but just as Erin was to leave the hospital she fell and got a nasy goose egg on her head! She had to stay and have a CAT scan, thankfully everything was fine. Since arriving home Erin has been to Duke for regular clinic visits and has not had to have a blood transfusion as expected so her counts are holding. She is currently on medication to boost her immune system. Last time she had the MiBG treatment, counts didn't start to decline for a few weeks. It is wait and see until scans are performed. In my last update I forget to mention that a beloved member of Erin's family had crossed the Rainbow Bridge: the family's white german shepard, Halley. Please visit Halley's page here. I have added some pictures here. You will see that Erin has a new friend. Here is a funny: While at CHOP the mother of a toddler told my Mother that her daughter thought she was Big Bird! Mom has a bright yellow sweater and...well you get the picture. See Grandma Big Bird on the picture page. Until next time, peace be with you. Mar. 25, 2006 I have some of the test results: the CAT and bone scans came back improved however the bone marrow showed no improvement. Erin and Kim leave tomorrow for CHOP where Erin will have a second MiBG treatment. My Mother is meeting them in Philly and will be able to help Kim during the stay. On the homefront, Curt's employer has been holding a raffle to assist Duke with children's cancer research: something that is sorely lacking in this country. Thank you to Curt's boss and all of his co-workers, their families, and everyone who has purchased raffle tickets: you are angels! The doctors have told Kim they expect that Erin will have to have an infusion of her stem cells after this second MiBG treatment due to the effect on her blood and platelet counts. Erin has 2 bags of stem cells stored at Duke so the infusion will most likely occur there. Hope to speak with Kim and my Mom during the week and will update then, if not when they return home. Until then, peace be with you and keep praying. Thanks! Mar. 6, 2006 HAPPY NEW YEAR! Yes that greeting is VERY late! I have had horrible computer problems!! I promise to be bettter at updating now that they are resolved! In January Erin and Kim traveled to CHOP (Children's Hospital of Philadelphia) for MiBG treatment: see below for a description of this treatment. My Mother and Erin's Grandmother traveled to Erin's home to help out while the girls were away. Erin had to go ahead with the MiBG treatment because January scans showed increased disease in her bone marrow. Erin has been hospitalized twice since the MiBG treatment, most recently for an infection in her port. This was a very dangerous situation since the infection could have travelled to Erin's heart: Thank you God it did not! Because of the infection Erin had to be on 3 heavy-duty antibiotics while in the hospital until the strain of the infection could be indentified. When she was finally released to go home, Home Health showed Kim how to administer the one remaining antibiotic via IV pump. Erin has had to have several blood and platelet transfusion due to low counts; this was expected after the MiBG treatment. Erin has not been able to attend school because of her compromised immune system. Work is sent home with big brother Christopher nad Erin is anxious to do a good job. The children in her class send cards and try to make her feel part of them. Tomorrow is clinic day, Erin and Kim will go to Duke. Kim hopes to get a date then for Erin's next scans which will reveal how well the MiBG treatment did. The results of these scans will determine whether or nor she returns to CHOP for a second MiBG treatment. In the meantime Erin continues to 'hang in there" with a great attitude. She is a smart, funny, amazing little girl. Her mother, father and brother are pretty amazing also. God Bless them all. Until next time, peace be with you. (Three new pictures added here.) Dec. 5, 2005 Hello, hope everyone had a wonderful Thanksgiving! The doctors agreed to reduce the dosage of ABT however the side effets were still too much. Erin was removed completely from ABT and had a feeding tube inserted because she had lost too much weight. Without the ABT her appetite returned and she is eating as well as she always has (which is not to say she was a great eater anyway!). The feeding tube is now gone also (she had it for several weeks). Erin had a MiBG scan recently and it showed 3 areas where NB lurks: the skull, the sternum and the pelvis. These are not solid tumors but spots that lit up on the scan. Erin will begin oral chemo tomorrow, just when her hair was beginning to grow back again. Pleasae keep Erin, Kim, Curt and Christopher in your prayers. Please pray that the chemo wipes out the cancer and she becomes NED once again. Hope to have new pictures soon. Keep warm! It is 12 degrees here today, Brrrrrrrrrrrrr! Thank you for your prayers and best wishes. Nov. 7, 2005 Again I apologize for the late update. Erin continued to suffer side effects from the ABT-751 and had to be admitted to the hospital again. Due to so much pain and nausea she was unable to eat or drink and became dehydrated. She was administered morphine while in the hospital to relieve the pain. Erin lost almost 5 pounds, weight she can sorely afford to lose. On Oct. 23 she and Kim flew to CHOP for scans and tests. Kim planned to ask the doctors about reducing the dosage of ABT. They received good news: the bone marrow biopsy showed no cancer cells on the left side and about 5% on the right side which is a big reduction from the last test. The tumor in her abdomen showed calcification and had grown smaller. The doctors agreed to reduce the dosage of ABT to see if it would have the same positive effects and Erin would not suffer from vomiting, diarrhea, fatigue and weight loss. Erin has attended school sporadically which is disappointing to her. Before the weight loss her parents had purchased her Halloween costume: Barbie Pegasus. Even though the costume was now too big, you can see how beautiful she looked!! New pics have been posted. Also see the pic of Erin with the LARGE angel. This angel was sent to Erin from several residents of the Lousiburg Kansas Care Center where my Mother and Erin's Grandmother, works. The residents wrote a card to send with the angel; they wanted a lovely girl like Erin to have this gift. Thank you as always for your Guest Map entries, e-mail and prayers!!! Until next time, peace be with you. Sept. 28, 2005 I am REALLY sorry I have not updated before now! I was ready to upload new info some time ago when I received a phone call and things had changed. Erin, Kim and Cheryl arrived safely in Philadelphia aboard their Angel Flight. Erin had tests, scans, etc. during the week. On Monday Sept. 12, when Erin was to begin the MiBG treatment, the hospital called to say Erin needed to come in to have a scan repeated. When the results were given, Kim was told that Erin would NOT be receiving the treatment because there was not enough disease left to treat! They did not use the phrase NO EVIDENCE OF DISEASE however the chemo she had prior to going to CHOP must have worked! So she did not have the MiBG treatment at this time. They flew back home on Wed., Sept. 14. Erin was prescribed the medication ABT-751. She took the medicine for a week then off for 2 weeks then back to CHOP for a check-up and more medication. The ABT-751 has possible side effects. Erin was complaining of tummy aches last week and had to be hospitalized from Wednesday until this past Sunday. She is home now but her parents are hesitant about allowing her to return to school today. Hope to speak with Curt or Kim this evening. I have a little story to tell: As Angel Flights are volunteer pilots using their own planes, the planes are small! Erin was sitting in the front next to the pilot. Before take-off the pilot gently told Erin that she wasn't to touch anything without his permission. Erin thought about it a minute and said "Hmmm, maybe I better sit in the back!" Thank you for your prayers, positive thoughts and Guest Map entries! Hope to update again soon. See the new pictures here. Sept. 5, 2005 I hope everyone has had a nice Labor Day weekend! Erin's Grandmother arrived safely at Curt and Kim's Saturday. Tomorrow morning Kim, Erin, and Kim's sister, Cheryl will fly to Philadelphia on an Angel Flight. This week they will stay at the Ronald McDonald House while Erin has tests and scans. She will be admitted to CHOP next Monday to begin the MiBG treatment. If all goes according to plan they will return home a week afterwards on another Angel Flight. Erin went to school for a half day last Wednesday! When she returned home she informed her Father that the next day she was staying all day and she did! I want to thank the many many caring people who have left encouraging notes both in Erin's Guest Map and via email. Also thanks so much to those of you who have made donations to Erin's Fund! Speaking of donations, Curt has made a request: Any future donations should be made to the National Children's Cancer Society. The society has helped Erin and her family immensely! Here is the link to the society's donation page: NCCS. You can donate by phone, on-line, or by mail. Please donate in the name of Erin Edwards. Thanks so much! Hope to speak with Curt and my Mom later this week. Will update soon. Peace. Aug. 25, 2005 Erin completed her second round of chemo last Friday, it was a five day course. She is home this week. There has been a change in the treatment schedule. Erin will have scans, tests, etc. at CHOP instead of having them this week at Duke. She and Kim will go to CHOP on Tuesday, Sept. 6. She will have the tests that week, then the following week have the MiBG treatment. If all goes according to plan she will stay a week after receiving the treatment, come home for a week, then go back for a second treatment. Curt will stay home to work. Erin's Grandmother (my Mom) will travel from Kansas on Sept. 3 to help out. Christopher has started school. Again if all goes well Erin may start school herself, perhaps in October. The family went to the school yesterday to meet the kids' teachers and Erin is excited about going to school. As a result of the chemo, Erin's hair was falling out in clumps so, with Erin's permission, Kim gave her a hair-cut. I have posted a picture of her new hairdo, click here to see. Thanks for all of your Guest Map entries and well wishes, will update again soon. Aug. 16, 2005 Erin was released from the hospital on Aug. 6. Her counts did not rise very much over that weekend but by Monday morning when she returned to the hospital for blood work they had risen some. On Wednesday, Aug. 10 Curt, Kim and Erin flew to CHOP. They met with the doctors who head the MiBG study. It is still not a given that Erin will receive the MiBG treatment. If after this last round of chemo the cancer is unchanged or decreased she will have the treatment. If the cancer is worse, she will not have the treatment. Yesterday Erin began a five-day course of chemo that ends on Friday. Next week she will have all of the tests to determine what effect the chemo has had. Before the first round of chemo a few weeks ago Erin was complaining of leg pain, but after the chemo she has not complained any more. So most likely the chemo is having a positive effect. She is feeling well and if all goes well she may even attend school after having the MiBG treatment. I know she would like that very much. I have added a few new pictures but before you go there NOTE THIS: Tomorrow evening I will be moving Erin's website to this URL www.jlbfigs.com/erin's_place.html. Be sure to save the link so you can visit again. After tomorrow evening her site will no longer be available at this URL. Thank you to those who have signed Erin's Guest Map and for your prayers and well wishes. Peace. Aug. 4, 2005 Erin completed her fifth round of chemo last Saturday. On Monday Erin went back to Duke for bloodwork; Tuesday morning Duke called to say that her counts were low and to come in for a tranfusion. While at Duke Erin developed a fever and had to be admitted. Minimum stay of 3 days. Next Wednesday (Aug. 10) Curt, Kim and Erin will meet with Dr. Maris at CHOP for a consultation. The plan so far is that Erin will have the MiBG treatment in early September. Here is some info about this study: MIBG is a substance that is taken up only by neuroblastoma cells. MIBG is combined together with radioactive iodine (131 I ) in the laboratory to form the radioactive compound 131 I-MIBG. The 131 I-MIBG delivers radiation specifically to the neuroblastoma cancer cells and causes them to die. In addition to killing neuroblatoma cells, the radiation from the 131 I-MIBG also kills normal blood forming cells (called stem cells) in the bone marrow. This effects the white blood cells, red blood cells and platelets – all which are necessary for life. It has been shown that the decrease in the number of blood forming cells is related to the radiation dose given for a single dose of 131 I-MIBG. It is hoped that by giving two closely spaced 131 I-MIBG treatments where the total radiation dose of the two 131 I-MIBG treatments is carefully calculated will increase the number of neuroblastoma tumor cells that are killed by the 131 I-MIBG while lowering the effect of the 131 I-MIBG on the stem cells of the bone marrow. Since 131 I-MIBG kills normal blood cells as a side effect, this therapy will be followed by an infusion of (known as autologous) blood forming stem cells taken from either the bone marrow or peripheral blood which can re-grow all the normal blood cells. July 25, 2005 Last Thursday Curt and Kim met with the doctors at Duke for 4 hours. Erin has a small tumor to the side of one lung and bone marrow involvement in the upper spine. The doctors have recommended she be treated at Children's Hospital of Philadelphia (CHOP) under Dr. Maris and his MiBG study. I do not know a lot about this treatment but am doing some research. There is a waiting list for this study. I do not know how long the list is. Today Erin and Kim went to Duke for surgery prep. Tomorrow Erin will have surgery to implant a subcutaneous port in her chest for chemo, bloodwork, etc. This will not be like the tubes she had previously; she will still be able to get in the water, etc and there will not be the cleaning and flushing of the tubes each night. After the port is implanted, Erin will be given chemo. She will have chemo for five days straight, then 2 weeks off, then again for 5 days. After the second round of chemo Erin will have tests, scans to determine the effect the chemo has had. The doctors told Curt and Kim it was a good thing they found it when they did. They also told them that the MiBG treatment has had a 30% success rate; however they were told that Erin's previous treatment protocol had a 40% success rate and she responded very well and achieved NED status. So there is every possibility she will be in the 30% for this round of treatment. Keep praying and hoping and wishing for Erin's complete recovery. I will post again soon with any news. July 14, 2005 I have spoken with Curt tonight. The family has been given very disturbing news. Erin had a doctor's appointment at Duke this past Monday; she and Kim have been at Duke everyday this week. Erin had an MiBG scan that showed a gathering of abnormal cells in the chest cavity. The MiBG scan also indicated bone marrow involvement. The doctor has told Curt and Kim that the cancer is back; the extent is not known at this time. Erin will go back to the doctor next Tuesday for a bone marrow aspiration and other tests; Curt and Kim will meet with the doctors next Thursday to learn all of the test results and discuss treatment. Next Thursday is Curt's birthday. Erin is feeling fine and is in no pain and is playing like any child. She shows no outward signs that the cancer is back. PLEASE pray and hope that the cancer can be beaten once again. I have added a few new pictures here. I cannot write anymore this evening. I will post again soon. Peace. June 10, 2005 Greetings! It has been a long time! Erin and family are doing great!! I have posted some new pics from their Make-A-Wish trip to Disneyworld. Everyone enjoyed the trip very much. They visited the Disney theme park, Sea World, and Universal Studios. While they were in Florida the family stayed at the Give Kids the World village. Curt could not say enough good things about the village; he said they were treated like royalty. Thank you Give Kids the World! Erin had her sixth birthday on May 28!! Hard to believe so much time has passed. She had a pony at her party and did not stray far from it for the entire party. (Hope to have pics of the party soon.) She really enjoyed the horses at the village in Florida too. Erin and Christopher are finishing up school as I write this and looking forward to a fun-filled summer. As I told you last entry Erin has had the tubes removed from her chest and is FREE to splash and swim in the water like every other kid! Hope to update again soon with BD pictures; keep those messages of support and prayers coming! Sign Erin's Guest Map if you have a chance. Hope everyone has a fun, safe summer! Until next time, peace be with you. March 19, 2005 I am REALLY sorry I have not updated in so long! Let me sat right away that Erin is doing great! Last month Erin had tests and scans and all of the results indicated she is still in remission! Here is some big news: Erin had the tubes in her chest removed! Now she can play in the sprinkler and go swimming this summer. Erin is having some difficulty with hearing loss as a result of the chemo; Kim has her wear her hearing aids a portion of the day and Erin has discovered she can hear better with them (she did not want to wear them before). Erin continues to enjoy her visiting teacher; she will not be attending school this year. She would have to have all of her immunizations again before she went and now is not the time to do that. The family is getting ready for their Make-A-Wish trip to Disney World next month. Erin is looking forward to meeting the Disney princesses (see new pics). Erin says she is going to wear one of her princess dresses on the plane; don't know which one will be her travelling outfit yet! I want to thank all of you who have left good wishes in Erin's guest book, and think of her and pray for her and the family. Thanks so much for your interest and support! January 13, 2005 Better late than never: Happy New Year!! I hope everyone had a joyous holiday season! Erin and family had a great Christmas. I hope to have pictures to post soon. In the meantime there are two new pics here. These were taken just after Christmas. Erin had an appointment at Duke last week; her last appointment! From now on her scans and tests will be done at King's Daughters Children's Hospital. This is where she was first diagnosed and had surgery. In a few weeks time Erin will have a series of scans and tests including bone marrow biopsy. Then a schedule will be set up for additional scans, etc. Erin is finishing up her last round of Accutane; this is the last of the formal treatment! Soon it is hoped she will have the tubes removed form her chest. The Make-A-Wish trip is planned for the end of March; the family is looking forward to it! Erin is continuing with homebound schooling; she may go to the classroom after returning from the trip to Disney. Please continue to pray that Erin remains in remission. Thank you for your well wishes and Guest Map entries; if you haven't signed it yet please do so! Until next time, peace be with you. December 14, 2004 Here are the school pics of Erin and Christopher. It is just great that Erin is enjoying her homebounnd schooling and that she was able to get a school pic! She is holding a kitty in the picture; Erin loves cats! I hope to have some holiday pics to put on the site later this month. Until then I wish you all a safe, happy, peaceful holiday season! December 7, 2004 All is well. Erin and her family enjoyed Thanksgiving with family. It has been a bit over a year since Erin was diagnosed and it has been a year this week since the surgery to resect the tumor. And here she is : in remission! All tests and scans continue to indicate this! I am hoping for some new pics soon; Erin's hair is growing in nicely. She was scheduled to have a school picture taken and I hope to put that pic on the website. Thank you for your visits to Erin's website and all of your good thoughts and prayers. I hope each of you have a wonderful holiday season! November 12, 2004 Here another month has passed before I updated...can't believe it! Sorry for the delay. Erin is doing great! She had a fun Halloween...see two new pics here. Erin went for scans and a bone marrow biopsy last week and earlier this week. Don't know any results yet; I hope to speak with Curt or Kim this weekend. Spoke with Curt a litle bit about the Make-A-Wish visit. Seems Erin also told them she would like to meet the Disney princesses. Looks like a trip to Disney is planned! Erin continues to take Accutane and her blood work is done every other week at the local Children's hospital. She continues to enjoy her at-home schooling; the school may be making arrangements her Erin to have a school picture taken. As you can see from the new pics Erin's hair is growing back nicely. I promise that as soon as I know the results of the scans and tests I will update! Thanks for checking in on Erin. October 10, 2004 I didn't realize it had been more than a month since I updated! Well as the saying goes, "no news is good news"! And it is true: Erin continues to do well! I have added a new pic and you can see her hair is beginning to grow back. Erin's teacher comes each afternoon, Monday through Friday, and she is enjoying "school". When Erin went off the nightly nutrition IV she lost some weight so she is taking an appetite enhancer; Curt says she wants to eat everything in the house! Erin's 100 day check-up went well; she still can't go out in public much. She won't be able to do so until about 6 months from the stem cell transplant. Curt and Kim decided to stop drawing Erin's blood on their own. They decided they would rather Erin see a doctor each week. I have to say I agree with them. So each Thursday they either go to Duke or King's Daughters Children's Hospital for blood work. The Make-A-Wish foundation paid Erin a visit last week. I don't have the official word on what she told them (I hope to talk with Curt or Kim later today) but I heard she told them she wants to meet Scooby-Doo. When asked what she liked about Scooby-Doo Erin replied "He solves mysteries". I guess it won't be until early next Spring when Erin makes her wish trip. I will give more info on this later. Time to go. The important thing is Erin is doing well and continues to be in remission! Take care. September 6, 2004 Spoke with Curt yesterday afternoon. Erin's blood counts were low last week so she had to have a shot Friday to help bring them back up. Curt and Kim receive a kit each week from the home health service they are with that includes everything they need to draw the blood and send it back by Fed-Ex to be analyzed. The doctor called them last week to tell them Erin's ANC (Absolute Neutrophil Count) was 650. If the ANC is below 1,000 she needs the shot. Kim draws the blood and gives the shot, if necessary, herself. Erin is off of the nightly TPN (IV nutrition). Erin will be going to Duke this week for her "100 Day" check up. This represents 100 days from the stem cell transplant. No word yet on scans and tests schedule but as I mentioned in the last update they will probably be in December. Of course if Curt and Kim have concerns before then they will be performed sooner. Erin continues to take Accutane. She is on a 2 week break from it currently. She swallows the pills fine. Accutane has a drying effect on the skin so Erin has cocoa butter cream rubbed on after her baths and vitamin E on her lips. Here is some really good news: the school district will be providing a teacher who will come to Erin's home this Fall. Erin was scheduled to begin kindergarten this year. Kim has submitted the necessary paperwork to get this started. Erin may actually GO to school after Christmas! Curt has contacted the Make-A-Wish foundation to begin setting up a wish for Erin. He emailed them but has not had a response yet. We don't know what Erin's wish will be. That's all for now. Take care. August 27, 2004 Sorry I have not updated sooner; I have had bronchitis and have not felt like being on the computer. I spoke with Curt earlier this week. He and Erin were at Duke Monday for lab. They will return this coming Monday for lab then again 2 weeks after that. If all is well she will have lab from that point on once a month. As for scans there is no official word yet on the schedule but Curt thinks she will have scans and tests again in December. Curt and Kim decided to go with the antibody study however Erin was randomized to NOT receive them. If in the future the antibodies are proven to have a positive impact she will automatically get them. Erin has started taking the cis-retinoic acid (Accutane). She is on 120mg a day: 60 mg in the morning and 60mg at night. She will take the Accutane for 2 weeks, then have a 2 week break. This will continue for 4 to 6 months. Erin is still on TPN (IV nutrition) at night but it has been reduced to every other night. Everybody is of course thrilled that Erin is in remission however Curt says he will never rest easy and I am sure Kim feels the same way. Erin's hair is growing back, she has some dark fuzz. Remember though Erin's hair was a lovely blond so we shall see how it comes in! I plan to call Curt and Kim this weekend so I will update then with any news. Take care and thanks for checking in! August 11, 2004 Kim called me this morning. Erin's scans and bone marrow biopsy came back CLEAR!! Erin has no evidence of disease!! This is the best news possible! Erin came home for a visit on Monday and she and Kim returned to Duke today. Kim will meet with the doctors tomorrow to discuss the test results and Erin's next course of treatment which is the cis-retinoic acid. Even though Erin has no evidence of disease she must still be closely monitored. She will continue having blood work done and there will be a schedule for scans and tests. Curt and Kim have not decided yet about the antibody study. Even if they decide to apply for the study Erin may not receive the antibodies since she will be randomized to receive them or not. The reason for the cis-retinoic acid and the antibodies is the hope that one or both will prevent Erin from relapsing. My daughter and I returned home yesterday from our trip. I had a huge disappointment: I was unable to see Erin! I caught a cold on the plane going out and I still have a cough. With Erin's immune system just coming out of transplant I could not be around her. My daughter however was able to spend the day with her: see new pics. Erin should be returning home for good this Saturday. I am sure the entire family will be happy to be in the same place!! I will update again after I get word concerning Kim's meeting with the doctors. August 2, 2004 Erin and her family continue to stay at the apartment in Duke. Her parents take turns staying there while the other is in Virginia going to work. The doctors let Erin come home this past weekend for two days. She was happy to be there since she has not seen her home for over 2 months. No word yet when she will be going home for good. Erin has completed her radiation treatments and continues to go to clinic for blood work. Her counts remain good for the most part. This week she will have a CT scan, a MiBG scan and a bone marrow biopsy. Hope and pray for clear scans!! As mentioned before Erin's next treatment course is 13 cis-retinoic acid; no word yet when she will begin taking it. Curt and Kim have a decision to make by Aug. 18: whether or not to enter Erin into a Phase 3 study concerning antibody treatment. Duke has it's own form of antibodies that Erin would be taking. They have been doing alot of research on the subject but have not made a decision yet. They hope to meet with Erin's main doctor soon for a discussion. I have added 2 new pictures here. My daughter and I are leaving Wednesday for Virginia and North Carolina. We are really looking forward to seeing Erin and the rest of our family! I will update when I return home next week. Kim's birthday is tomorrow: HAPPY BIRTHDAY KIM!! July 11, 2004 Sorry is has been so long since I have updated but the news is good! Erin's blood counts are steadily rising; she goes to clinic each day to have them monitored. She and her family are currently staying in an apartment near the Duke Medical Center. A week ago Erin had a CT scan to determine the points that will be radiated and a body mold was created that she will wear during radiation. As mentioned before the spots to receive radiation are the original tumor location, the left femur and the forehead where she had a tumor above her eye. Curt was worried about the head radiation because it can cause many serious side effects. However since the tumor grew on the bone and not in the brain the radiation will be much less intrusive. This past Friday they went to Duke for radiation simulation; the actual radiation begins tomorrow and there will be 12 treatments in all. At night Erin must be hooked up to IV nutrition (TPN) and medication to help her blood counts recover. But during the day she is "free" and has been going outside with her mask on to ride her trike around the apartments. (See new pics here.) I mentioned in my last update that after radiation Erin would be receiving 3F8 anti-body treatment. Curt and Kim were not sure about the possibility. It appears that at this time she will not be receiving that treatment. The only place to receive the 3F8 treatment is in New York City and it is not part of the Duke protocol that Erin is on. She will most likely receive 13 cis-retinoic acid (Accutane) treatment after radiation. This treatment, it is hoped, will prevent the cancer from re-occuring. Erin will take it in pill form. I will update again soon. Thanks all of you for your support! June 19, 2004 It has been a week and 3 days since Erin's stem cell transplant. The doctor predicted that this past week would be much worse as far as side effects were concerned but his prediction did not come true! Erin suffered fevers, nausea and vomiting. She felt well enough on a few days to ride her trike up and down the halls. Erin is to be released from the hospital on Monday. She and her family will need to stay in the Duke area for the next 30 days or so for follow-up treatment and radiation. Curt and Kim had to go to training this week to learn how to take care of Erin as she recovers from the transplant. For many months to come Erin cannot go outside without a mask. She cannot be in crowds; that means she cannot start kindergarten in the fall. She cannot go to church, malls, parties, restaurants, etc. This is because of her immune system; it will take some time for it to build back up from the transplant. The next phase in Erin's treatment is radiation and immunotheraphy using the monoclonal antibody 3F8 to get the body's own immune defenses to attack neuroblastoma. I will update again soon. Thank all of you for your support and prayers! June 9, 2004 It has been a week today since Erin's stem cell transplant. She has been running fevers and generally feeling BLAH. She is on constant pain medication--fetanyl-a cousin to morphine. She cannot take morphine because it makes her nauseous. The doctor told Kim the other day that they could expect to see worse side effects in the days to come. We will see. Engraftment of the stem cells usually takes 2 to 3 weeks. This means that hopefully the stem cells given to Erin will begin to grow into healthy cancer-free cells. I have added a few new pictures here. One of the pictures shows the syringe holding the stem cells; it is one of two syringes that were transfused. The hand holding the cells belongs to Erin's Mom, Kim. She cut herself out of the pic before she sent it to me! Will update again soon. June 2, 2004 New pics added on the pictures page. Today Erin received the stem cell transplant. It began at 11:26 and ended at 12:10pm. Today is considered day "0" since Erin has new stem cells now and the chemo she received prior to the transplant took her existing immune system down to nothing; now she must "grow" another. Erin was given medication so she would be asleep when they gave her the stem cells. The next two weeks will be critical; any side effects that may occur due to the chemo and transfusion will probably occur then. By day 14 or 15 Erin should be feeling better. She will be released from the hospital in 20 to 30 days if all goes well. Starting this evening Erin will be on IV nutrition since she is not expected to have much of an appetite and she will be given a medication that stimulates the production of white blood cells. When I spoke with Kim today Erin was watching a Winnie the Pooh video. Kim plans to come home for the weekend and Curt will then go to Duke. Again if all goes according to plan Erin will begin radiation treatment in about 6 weeks. After she is released from the hospital in 20 to 30 days she will be expected to stay in the Duke area for quite some time for follow-up. It is hoped that the family will be able to stay at the Ronald McDonald house. To wrap it up we are all hoping and praying that any side effects Erin experiences are short-lived and not as serious as they could be. Will update when I have more news. May 28, 2004 Today is Erin's fifth birthday. HAPPY BIRTHDAY ERIN!! Today is the fourth and last day of the mega doses of chemo. So far Erin is in good spirits. Her Dad went to Duke today and brought her a little pink plastic tricycle thingy she had asked for. If she feels like it she can ride this around the halls. Will update again when I have more news. May 26, 2004 Erin came home from the hospital on Sunday in good spirits. She spent the day and evening with family. She and her Mom left for Duke Tuesday afternoon. The four day cycle of chemo was set to begin at 10:00 this morning. I have good news: the bone marrow aspiration came back clear!! Of course Erin still has a long way to go. The stem cell transplant chemo can have many adverse effects. To begin with she can expect to have painful mouth sores, nausea, and no appetite. She will be on IV nutrition. Kim was told to wash all clothes she was bringing to Duke twice and they had to purchase shoes for everyone that had not been worn outside. The chemo can have very serious side effects on Erin's internal organs and she will be prone to infections. All of your prayers are needed. I will update when I have news. May 23, 2004 Erin and her Mom returned home from Duke last Thursday. Supposedly all of the testing has been done. On Thursday morning Kim thought she would be meeting with the doctor to discuss the transplant and to give him all of the consent forms but there was more testing to be done. Erin and Kim were not happy as they were under the impression everything had been done. Instead of getting home in the early afternoon they got home in the evening and Kim was scheduled to go to work that night. It didn't work out that way; at 11:00 that night they received a call from a doctor a Duke who told them one of the blood cultures had come back showing Erin has an infection and to take her to the hospital immediately. So Erin and her Dad went to King's Daughters and she was put on antibiotics. Erin could be back home by now; I will know more when I speak to them later today. Still don't know the results of the bone marrow aspiration. The three spots on the MiBG that will have to be radiated after the stem cell transplant are the left femur, the original tumor site (adrenal gland) and head (Erin had a tumor on her forehead above her eye). Erin was fitted for hearing aids this week. The date for the transplant is now Tuesday, May 25. I will update again when I know more. May 16, 2004 As you know from the last entry Erin was scheduled to go to Duke last week for scans and tests. The docs at King's Daughters did not want to release her from medical care to make the trip to Duke so on Monday morning an ambulance took her to the Norfolk airport. A team from Duke met her and her Mom at the airport and flew them to the Raleigh-Durham airport where another ambulance took them to Duke Medical Center. (new pics here) Some of the tests, but not all, were performed. I will write what I know then update when I know more. The CT and bone scans were clear (yes!), the MiBG scan showed 3 spots that will have to be radiated (don't know where the spots were yet), and Erin's hearing test showed damage to her high frequency hearing. The bone marrow aspiration was not done; Erin and her Mom will return to Duke tomorrow for further testing. Curt and Kim met with the stem cell transplant team on Thursday. The tentative date for the transplant is May 24. The team told them that Erin will be given very high doses of chemo that will have more severe side effects than anything she has experienced to date. She will then spend 2 weeks recovering from the chemo before the stem cells are transfused. During this time Erin will be extremely prone to infection as her immune system will be virtually non-existent. I will update later this week. May 7, 2004 Erin was admitted to King's Daughters hospital yesterday. Her blood counts were very low and she spiked a fever. Erin's parents received a call from Duke this week to schedule scans and tests for next week. She will be at Duke all of next week. She will have a kidney function test (some of the chemo can have adverse effects on the kidneys), bone scan, CT scan, MiBG scan (for this scan Erin will drink a solution the day before; the scan will "light up" in places where there is neuroblastoma), a hearing test (some of the chemo can have adverse effects on hearing), an ECHO test and a bone marrow aspiration. Erin's parents will also meet with the stem cell transplant team next week. So a busy and stressful time for Erin and her parents. We are all hoping and praying that the scans and tests show that Erin is in remission and that she has not been hurt by the treatment. I will update as soon as there is news. May 1, 2004 Erin was able to go to Duke this past Monday for the sixth round of chemo. She and her mother will be returning home today. The doctors decided not to do the scans this visit. They want to give this round of chemo a chance to do it's job and then they will do the scans in 2 weeks. This was the last round of chemo in the induction phase of treatment. If all goes according to plan Erin will enter the hospital in 4 to 6 weeks for a stem cell transplant. Will update again when there is news. Apr. 26, 2004 Erin's blood counts have been flunctuating on her recent clinic visits. She was supposed to go to Duke last Friday for the sixth round of chemo however her platelets were too low so she was not able to go. She will go to clinic this morning and if the platelets have risen she will go directly to Duke. On this visit she will have a complete set of scans done and they will be compared to previous scans to see what effect the treatment so far has had on the cancer. Pray for GREAT news! New pic added on the pictures page. Apr. 12, 2004 Erin and her Dad returned home from Duke last Wednesday. Erin had her fifth round of chemo. She will go to clinic this morning for bloodwork (she goes every Monday and Thursday). If her counts hold up she will return to Duke in a few weeks for the sixth and final round of chemo in the initial phase of treatment. I will update again soon once I have talked with Erin's Dad. Hope everyone had a lovely Easter! Apr. 4, 2004 Erin went to clinic Thursday for blood work and her counts were high enough to go to Duke. She and her Dad left Thursday afternoon and Erin started her fifth round of chemo on Friday. It is a four day process this time then she has to have IV fluids for a day so they won't return home until later this week. Hope to update again in a few days. Mar. 28, 2004 When Erin went to clinic last Thursday her blood counts were low but they were told to go to Duke anyway. The hope was that they would rise enough by Friday for her to have chemo. Erin and her father left for Duke Thursday afternoon and checked into a hotel. When they went to the hospital Friday and her counts were checked they were lower than the day before so she could not have treatment. They went home. Erin will go to clinic tomorrow to have blood work and if the counts have risen she will go back to Duke. The benefit last Sunday was a success; lots of people came. Snow White came to visit Erin, see picture here. Will update later this week. Mar. 21, 2004 Erin was able to come home from the hospital last Tuesday. When she went to clinic Friday her white cell count was good but her platelets were low. They will need to rise before this Friday when she is due to go back to Duke for the fifth round of chemo. After the fifth round, Erin has one more round of chemo in what is called the "induction phase" of treatment. It is hoped she will then be in remission. Then she will go into the hospital for a seventh round of chemo that will take her immune system down to nothing in preparation for a stem cell transplant. I spoke with Erin's Dad yesterday and she was in good spirits, playing a computer game. Tonight the Lee Memorial Babtist Church in Chesapeake, Virginia will be holding a benefit for Erin at 5:30pm. Erin and family will be attending. Mar. 13, 2004 Erin and her Mom arrived home from Duke Friday a week ago after Erin had her fourth round of chemo. When she went to clinic Tuesday her blood counts were not so good and by Thursday she was not feeling well at all. When she went to clinic yesterday she had a fever so she was admitted to the hospital. She is on IV fluids because she has not been drinking. She has not been eating either. Her appetite is still good and she wants to eat however she has sores in her mouth , an effect of the chemo, and it hurts to eat. Hopefully this will pass soon. Don't know how long she will be hospitalized. I will update again when I have more news. Keep those prayers coming! Mar. 3, 2004 Spoke with Erin's Dad last night. Erin went to clinic Monday for blood work and her platelets were over 100! Considering that they were at just 35 last Friday that is good news. She and her Mom left for Duke and Erin's fourth round of chemo started Tuesday afternoon. It is a 72 hour process so she will not be home before the weekend. One of Erin's doctors informed Kim that if all goes according to plan Erin will have her stem cell transplant at the end of May. This would mean Erin will be in the hospital on her fifth birthday which is May 28. Curt and Kim have been told Erin will be in the hospital for 20 to 30 days when she has the transplant. So Erin's counts are good and she has not had to be hospitalized in between the last two rounds of chemo: good news. Also when Erin was first diagnosed she had a large tumor growing on the bone above her eye. With chemo this tumor is now only a small bump. We are hoping that this means the chemo is working to rid her body of cancer everywhere! Erin had a fun weekend with her family: she went to a Mardi Gras party at King's Daughters Saturday night and to the beach at Nags Head, NC on Sunday. (See pics here.) Will update again when I have news. Thanks so much for your visit and well wishes! Feb. 27, 2004 Erin was to be at Duke today for her fourth round of chemo but she couldn't go because her platelets were too low; they need to be at least 75 to have chemo and hers were only at 35. She will go back to clinic on Monday to be re-tested. Part of Erin's treatment is to go to clinic twice a week to have her platelets and blood counts checked. In some cases she is given platelets and a blood transfusion. If you are able to contact your local blood bank and give blood; just another way to help those fighting cancer. The good news is that Erin has not had to be hospitalized between the last two rounds of chemo as she had to be twice before. If she spikes a fever of 100.4 or above she has to go to the hospital and this has not happened. Erin has tubes in her chest that her blood is taken from and through which chemo is administered, these tubes MUST be kept free of infection. Erin is only four years old but she helps her Mommy clean and flush the tubes every night! Erin must also have a shot every day to help her white cell blood count; she calls it the "little pinch". In the beginning she would have numbing cream put on before the shot but now she just wants to get it over with and doesn't want the cream. Is she a brave little girl or what? Erin has been in good spirits and that is the best news of all! Thanks so much to all of you who have sent emails and/or signed the Guestmap. Your positive thoughts and prayers are a source of comfort. Keep it up! I have added a picture page to Erin's site, click here to see it. Only a few pics so far; I am waiting for more. Take care. I will update again when there is news. Feb. 11, 2004 As I write this it is Feb. 11, 2004 and Erin returned home today from Duke after having had her third round of chemo. She will return in approximately three weeks for another round. I will try to keep this page updated with her progress. By the way Erin is my neice, my brother's child. It is very frustrating for me to be in Kansas City...so far away from my brother and his family. I went to Virginia and was able to be with my family when Erin had her surgery and was in the hospital for a week. I decided to create this web site to help keep family and friends updated on Erin's condition. Another reason for this web site is to request prayers for Erin's recovery. Any and all she could get would be helpful! Thank You!
 You may donate on-line or via phone or mail. The NCCS has helped Erin's family immensely! Please...make a donation in Erin Edwards' name. Here is the link to the NCCS donation page: NCCS Donation Page Here are two additional donation choices: CureSearch Children's Neuroblastoma Cancer Foundation The medals on our chests are portacaths for meds Helmuts won't stay on cause no hair is on our heads Our weapons of destruction We take every day We fight the battle within us While we struggle on to play. We fight with honor and courage No Marine could do as well We are only little children Living in this hell. So bring on the medals The Purple Hearts of War The Gold Cross, The Silver Star To place upon our scars. For We are the Children of Cancer No One has fought so hard But every day we struggle on Our LIFE is our reward. Cheryl J. Mom to a leukemia survivor |