Support Erin Schaefer

Final Entry - First of all, we would like to thank everyone who came to Erin's services and for those who didn't make it for their continuous support. It was such a huge turnout, I know Erin was watching and was very happy but also mad because she physically couldn't be there amongst you all. It was a great tribute to Erin. We love you all and you will be in our hearts forever!

At this time I would also like to take a moment to share the events leading up to Erin passing since most of you knew Erin was battling cancer she did not pass from her disease but from an infection she acquired during her last treatment. Please bear with me as this is so hard because I had never left her side, since she was born. She has never been a day away from me! Always Daddy's Girl! As you know if you have been following Erin was diagnosed with Neuroblastoma on her birthday October 6, 2009 since then she has not missed a beat in her treatments. This last treatment was going to be her final treatment as far as chemo, from then on it would have been just immunotherapy treatments to follow. Erin went into this treatment with just 5% disease showing in one side of her bone marrow, which is nothing compared to when she was first diagnosed with 100% disease stage 4. This treatment should have wiped it out and sent Erin on her way to remission. Erin was admitted on April 6, 2010 to start her final treatment which consists of 4 days of continuous high dose of chemo, 2 days of rest then her stem cell rescue (transplant) on April 14th. Erin blew through it all, then that night Erin started to shown signs of the side effects associated with this treatment. She got mucositis which are sores in your mouth all the way down your GI track, which made it almost impossible to eat or drink. She also got diarrhea which is a delayed reaction from one of the chemo medicines Mepholan. For the next 2 days they monitored her checking blood and stool for any type of infections since her immune system was zero. Everything showed negative until Saturday April 17th she showed positive for an infection called cedif (not sure how to spell) that you get when you're on to many antibiotics, she has had it before and it went away in a couple of days. By this time, we noticed Erin's face was a little swollen, the doctors said it was due to the mucositis. Erin was also getting up to use the bathroom every 5mins so we had a portable put next to her bed. You just had to be there to see how strong she was! It got to the point where she was so exhausted she would lean over and put her head on the bed and when I would ask "baby are you okay?" she wouldn't even look up all she would do is give me a thumbs up (She's My Hero)... By Sunday April 18th around 3pm the nurse had informed me that Erin's urine looked very concentrated and she wasn't going as much meaning she was retaining fluid. The nurse suggested that might give her a drug called Albumen which draws the fluid from your body to help you urinate. The doctor on rounds at this time didn't agree. By 9pm this evening Erin was getting worse and her heart rate had went up, so they had an ICU doctor come down and evaluate her. He decided to take her to ICU to monitor her closely and the first thing he did was give her Albumen and she urinated more than a liter. Also, that first night her permanent IV port (located on her chest) blew a hole and couldn't be fixed till morning so they poked IV's in both her arms. This was very hard for since every night I would sleep next to her in her bed and now I couldn't so I would just pull up a chair next to her and hold her hand while we slept. By Monday night Erin's mid section had been swelling up, so they took her to CAT scan and informed me that her intestines (bowel) was very swollen the surgeon on duty said " we may need surgery to see if there was any dying tissue causing the infection" but he said he would hold off because she had no immune system and surgery may kill her, so he decided to wait to see if the medicines would help. He said it could be 2hrs, a day or even 2 days but eventually have to go in. So I immediately made the phone call to my family to come, the next early morning my two boys were sleeping in the back and me and my daughter Randi who was there every day with me was talking to Erin. Even with everything that Erin was going through she was concerned how everybody else was, she was so thirsty but not allowed to drink (because of possible surgery) but she was worried about Randi being thirsty she asked her if she wanted a soda and said she didn't want Randi spending her money and that she would get the nurse to get Randi a drink because Erin knew everything she got was free. It was moments after Erin sat up and screamed she couldn't breathe, I kept reassuring her "baby your breathing" with my hand on her chest. Then in a second her eyes got so big, she was so scared (I've never seen her so scared) she put her hand on her chest and screamed "I don't have a heart beat" my heart fell to the floor and all I could do was scream for help. Immediately it seemed like 100 people were in that room they asked my children to step out as I held Erin's hand reassuring her that she would be okay. It seemed like eternity for them to get set up meanwhile they put an oxygen mask over her nose and mouth to help her breathe and just like feisty Erin she was telling the respiratory person to use two hands not one. It was moments after that Erin had looked at me pulled off her mask and said "Daddy I want to go home!" Then shortly after the last words I would ever hear my baby girl say was "Am I going to die?" I along with the medical staff yelled NO! And then they int-ebated her. Later that evening I was told by the ICU doctor in charge that she was so sick he was afraid we were going to lose her. I was so angry! The next morning the surgeon said I have no choice but to go in to see what's causing this. Erin went through surgery like a champ! The surgeon said when he had made the incision her intestines literally burst out. They were so swollen but the good news was he didn't find any dying tissues. What he did do was leave her bowel outside of her in a bag that he made to relieve pressure because she was so swollen. At this time Erin had so many meds going through her for infections, fungus and to control her blood pressure she was on dialysis, respiratory and oxygen machine. Erin's heart beat this whole week did not drop below 160. By Friday the surgeon decided to make Erin a new bag out of gortex, which would be sewn to the inner lining of her skin, since the previous one kept leaking. Again another surgery that could kill her but Erin went through it like a champ again. Even though Erin was sedated I knew she could hear me, I would hold her hand and look into her eyes and ask her if you can hear me to blink and she could blink once and she would also squeeze my hand. I would make it a point for her to hear my voice or her brothers and sisters by continuously talking or reading a book to her so she would not be scared. By this time Erin was switched into a rotating bed and now I could not even sleep next to her by the bed. The next few days all we heard that Erin was still very sick but was not getting any worse moving forward very, very slowly. By the following Tuesday April 27th they decided to do a brain scan to check for bleeding. They found no bleeding but they did find in her right eye she had a detached retina. During this week they were actually trying to wean Erin off some of the blood pressure medicines and was almost successful but by Friday morning the 30th they informed me that Erin had an infection in her lungs and couldn't figure out what it is since she was on the best meds to cover everything and all her blood cultures had been coming back negative. The infection disease team stepped in and took samples and said could not give me answers till Monday because tests take 3 days. This was the turning point for Erin, by Sunday night they said had to do another brain scan and the trip there they were sure they were going to lose her but then again Erin did not miss a beat and came through like a Champ! What they did find though, was that Erin had excessive bleeding behind both eyes and there was nothing they could do that it was something that would be taken care of later. By Monday morning May 3rd I was outside the room talking to her cancer doctors when Erin's blood pressure took a dive, what I didn't know was that it previously dropped twice that morning but I was not informed because her nurses automatically adjusted her meds to control it. They got her stable then the doctor came out and told me (what no parent wants to hear) she said that Erin was on the max dose of meds what they use when they bring people back to life. She said if Erin's blood pressure dropped again the next step would be CPR and the shock would harm her insides so badly and it would only keep her alive for a few more hours. We had a meeting and decided that if her blood pressure dropped again we would let it take its course within 20 minutes (around 1:30pm) the nurse came in and said Erin's blood pressure had just dropped and for us to immediately go to her. When we got to her, her blood pressure was at 30 we held her hand and cried while we called to inform everyone. Her blood pressure slowly began to drop as we watched the countdown 25, 24, 23....... But Erin was a fighter! This went on for several hours as the hospital filled with family and friends. They said they couldn't believe how many people were there. During these hours we took Erin's hand prints, I put her hand print over my heart and so did others who were there. Like I said this started at 1:30pm and she fought hard, at about 7pm I told the doctors that as it got close my baby was not going to die in this bed but in my arms. By 7:30pm I was in a chair holding her with my family gathered around and her extended family filled the room outside the room, hallway, and waiting room. All I could do was look into her eyes and tell her I Love Her and don't be scared. At 8:20pm the doctors came in and said she had no more blood pressure and they were going to disconnect her and it would be 20 mins or less before her heart would stop beating. Before I knew it I looked up and it was 8:50pm I looked at my kids and said Erin won't pass till 10:00pm. They looked at me unknowingly why? And I said because every night at 10pm we would watch George Lopez together. I had my hand on Erin's neck feeling her pulse, and at 9:58pm was her last beat....George Lopez starts 2-3 mins before the hour. I asked my daughter to go and get the nurse she was met at the door way them saying we know her heart had stopped. Soon after everyone said there good bye's and her room was cleared. My family soon left because I wanted to give her a bath (clean her up) and they could not bear to watch. My oldest daughter Randi stayed to help me, and we stayed till 3am hugging and kissing her not wanting to let her go... I want to say thank you to all for letting me share this with you. It's been two weeks since her passing and I don't think if it wasn't for all of you and your support I would not be here writing this to you. Erin has been my heart beat since the day she was born and I am so lost without her! Erin has touched so many people with her kindness, orneriness and lovingness that her memory will live forever!! Erin you are my hero and inspiration! Always Loving You Daddy!!

5/3/10 -If you have not heard by now, Erin passed away last night. Her family still needs our support, please donate online, start a fundraiser and raise awareness for this terrible disease. Thank you for all of your thoughts, prayers and support.

4/29/10 -Hey everyone we're going on day 8 since Erin has been on life support and she is staying strong. She has been stable and taking very, very small steps forward so it will be awhile before any major improvements. So keep those prayers and positive vibes coming!

4/22/10 -Everyone as some of you may already heard Erin got an infection that is got so severe she is battling for her life right now. I do not want to get into detail as it is already hard enough just to write to everyone now. I just would like everyone to please step up those prayers and send those positive thoughts her way I KNOW SHE CAN FEEL THEM! Thanks and much love the Schaefer family.

4/14/10 -Erin finished up her chemo on Sunday afternoon and handled it very well with just a little nausea so far. Today she had her stem cell infusion and that went good too. The only thing that seems to bother her is her feeding tube in her nose. They put it in, in anticipation she will get Mucositis and have a loss of appetite, but so far none yet. For now, it's just rest and she will be isolated for about 60 days depending on how well her cells in-graft.

4/5/10 -Hi everyone just wanted to say thanks to Imperial Valley BMX and to all that came to the fundraiser. Erin and all of us are so thankful to have so much support from all of you and our whole extended family of BMXers from all over. Also a special thanks to the ones that continue to set these events up (you know who you are!). Our family appreciates everything that everyone does and we don't know what we would do without all of you! Another special thanks to BOOMTOWN BMX NOR CAL that was so nice of all of you and thanks so much for thinking of us. Erin goes in tomorrow for the high dose chemo with the stem cell rescue she will be in for 3 to 4 weeks so keep her in your prayers! Thanks again everyone Love, The Schaefer Family

3/28/10 - We got back from Erin's make a wish trip on the 25th. It was such an exciting trip for Erin. The whole family went so it was very touching trip for us all! Erin had such a great time she didn't go to sleep till after midnight every night just having fun with her brothers and sisters! We stayed at Give Kids The World. What an amazing place, they had all kinds of things for Erin to do, a theater, miniature golf, train rides, buffet kitchen, ice cream parlor, game room, character pictures, pizza everything all day till 930pm and 1030 pm all for free. Erin got to go to Disney World 3 times, Universal Studios 2 times (2 separate parks), Sea World, Mid Evil Times, and a place called Gatorland where she got to feed alligators. Erin had a special pass so she never waited in any lines for rides or pictures! The whole trip was a blast for her. Today Erin spent the whole day at the ranch with her horse, she has not spent that much time since this ordeal started. She goes in next week to start her treatment which will be 3 to 4 weeks and then when she comes home she will be on lock down for another 30 to 60 days because her immune system will be low. She seems to be in good health and spirits so I think things will go good! Thanks everyone for your continuous support Love the Schaefer Family.

3/16/10 - We got the results back from Erin's tests and they are so much better. All the diseased sites that lit up all throughout her body, skull/spine/shoulder/arm and legs are now gone (undetectable). However the area where her tumor was removed showed signs but so small not removable could be fluid or scar tissue? Also her bone marrow still showed signs but very little, her right side now measures 5% and the left is so small they could not put a % on it. After meeting with the doctors and an unofficial 2nd opinion (meaning we didn't actually meet) we have decided to stay on the protocol (trial) since her sign of disease is so minimal they suggest we continue with the next step which is high dose chemo with bone marrow transplant (her own cells) this process should eliminate any disease that is left. This will be followed by an after treatment of antibodies. Were not at 100% but so, so close and everything is still moving forward! In the meantime Erin gets her make a wish and were all going to Walt Disney World for a week, she is so excited! Her treatment will start the week after we get back so keep her in your prayers. Love, The Schaefer Family

2/21/10 - We would like to thank everyone for the Valentine fundraiser last Friday and that Erin enjoyed opening all the valentine cards and gifts that you gave her. We were in the hospital on Valentine's Day it really made her so happy! Her 6th round of chemo will start on Wednesday 24th, and then sometime in the next few weeks they will run all the tests again to see how much she has progressed. Thanks again everyone for continuous support for Erin and us!

2/12/10 - She had her surgery on Wednesday morning and seems to be very well. Doctor said surgery went excellent he didn't find any bad lymph nodes in area and the tumor came out smoothly. Erin will have another round of chemo in about 2 weeks then they will run tests again. Bone marrow test, cat scan and mibg scan. Then we have to make a decision on what route to take to further treat her, which may include getting treatment in New York.

2/6/10 - We went in on Monday for routine labs. Before they start they take your vitals and for some reason Erin had a temperature of 101 which means automatic admittance. What was weird her temp was gone in 35 min, but since her immune system was at 0 they didn't want to risk it. Well it's Saturday and we're still here she hasn't had a temp since but were waiting for her immune counts to go up. Hopefully we go home tomorrow. Kind of a bummer since her surgery is on Wednesday she hasn't had any home time to have fun. When you're admitted for fever and have low counts you're confined to your room, so it's been a long boring week for her.

1/23/10 - Erin's cycle 5 has been pushed back till now because her blood counts were not where they needed to be. Day one of four started last night, so far so good no nausea yet! In the meantime while waiting to be admitted Erin found a new sport, bowling. She can't get enough of it. She also likes to play two video games there, Fast and The Furious (racing car game) and a motorcycle racing game both where you can race against another player. These games get her all pumped up! It's the most fun I have seen her have in awhile. Well after this cycle of chemo there are more tests to run again to see how much more progress there is. They also have her surgery scheduled for feb.10 to remove the main tumor.

1/3/10 - On New Year's Eve Erin got a bloody nose that wouldn't stop, we took her to the emergency room so they can give her a platelet transfusion. But before they did we noticed she was warm so we had the doctor take her temperature and it was 101.8, so that was an automatic admittance to the hospital, we were there for two days. She came home on January 2, 2010 in the afternoon. Her counts are still very low so she is unable to do anything. Hopefully, they will be up sometime this week. She goes in for her fifth cycle on January 12 which is the same protocol as the third cycle which made her really sick. There is talk about scheduling her surgery sometime by then end of this month for the removal of the tumor. Her spirits seem "UP" this weekend, she has been running around all over the house.

12/27/09 - Erin did her 4th cycle on 12/21 and we got out 12/24 Christmas eve. She did pretty good this time only getting sick on the last night. She was a little drained when we got home but was so happy to be home for Christmas. It was great for her to have all her brother and sisters there, she had a good time.

12/12/09 - Her third cycle was rough on her, but she is doing ok now. We went in on 11/30 and didn't get out till 12/08 late evening. She finished chemo about 1am Friday 12/04 but was very nauseated and kept vomiting. She had nothing to eat since Thursday morning till Sunday afternoon and all that was just two teaspoons of oatmeal. She slept most of Monday. About 8pm that night she woke and the first thing she said was I want pizza and Buffalo wings, so we ordered Dominos and she went to town! She ate a little too much too soon and gave a little back a couple hours later. She had been doing ok so far this week. During this last stay she had a new port put in on her chest and another bone marrow test done. The bone marrow test showed some improvement! The first test that was done in October showed 100% diseased on one side and 15% on the other. They now read 60% on that side and 5% on the other, we have progress! Also a cat scan done a few weeks ago showed a little shrinkage of her tumor. Slowly but surely were moving in the right direction. Looks like we will be in the hospital for Christmas, she is supposed to start her 4th cycle on 12/21, were trying to move it up a few days but don't know yet. We wish everyone at the track and all BMX families a Merry Christmas and Happy New Year.

11/30/09 - She will be going in for her 3rd cycle which is supposed to be stronger. I will keep you updated on how it goes.

11/29/09 - All this week Erin's counts were UP so she was out riding her horse during this Thanksgiving Break... Last week she had 2 test done that showed little improvement on her tumor (which the doctors expected due to the fact that it has only been 2 cycles of chemo. The same with the multiple areas)

11/20/09 and 11/21/09 - Erin did a procedure called stem cell collecting. She gets hooked up to machine that filters her blood out collects her good stem cells and puts her blood back in.these cells are then saved, when its time for her bone marrow transplant her own cells are given back to her.each session lasts about 6hrs.

Erin's fundraiser on KUSI!