Last Day of Round 1 Antibodies

Since I haven't been able to get online until tonight, and I worked for a while tonight before getting on tonight to update, I wanted to post the updates from Facebook, since I know many of you don't use facebook.

Tuesday Evening:

Day 2 of round 1...it's been an exhausting day with not a lot of sleep last night so slept in today! Around noon Emily started to break out on her face with a rash and within half hour it got worse! Claritin was given and Sue and I took her to hospital Halloween party and she was crying her toes hurt and feet itch! So Benadryl was given! Ch14.18 caused a bad bout of pain so they upped the morphine and we questioned neurotonin! So we started that! Bout 2 hours ago she has a fever of 101.3, they want the ch14.18 to keep going so we will watch her temp! Emily seems ok, please hope the rest of evening while running she is ok! We are all exhausted!

Wednesday Evening:
It has been a long day here with fevers, stomach pain, itching from rashes and the peripheral line stopped working! 3 times it took to get a new line and then needing the GM-CSF shot, so it's been a long day! Emily is asleep now with morphine, Benadryl and Tylenol dose and ch14.18 started a little ago! We hope for a night of no pain and anymore rashes!

Late Wednesday Evening:

Day 3 of antibodies will end around 505am with morphine running until 705am! Emily has done ok tonight except for itching pretty badly which was driving her crazy and had some pain in her toes, but after that seems ok hopefully we are on top of the pain now! She has had some swelling in her hands, toes and feet and some in her face and slight fevers again! Sorry for no updates on the blog but have not been able to log on to sign in with low signal here past couple days on computer so hopefully tomorrow! ( Or may try to update on iphone) Please hope rest of night continues to go with little to no pain!

Thursday Evening:

Day 4 of round 2 started around 440 pm and Emily has had quite a bit if tummy pain tonight! Thankfully itching hasn't been as bad but the pain in her tummy has been hurting! She really hasn't been up for much during the day just been pretty tired and irritable! Fever was 100.7, anything over 101 they will draw cultures when the ch14.18 finishes in the morning and then she will have to stay for 24 for negative cultures! Send positive thoughts for no fever over 101 and no more pain!

Emily did need a blood transfusion today since her hemoglobin dropped to 7.4 so, they were hoping this would help with some of her energy during the day. Her platelets are at 28 so they will do another CBC in the morning after the CH14.18 stops to see how things look. Depending on how things look, she may need platelets.

Emily is on an antibiotic, cephaphim, because of fever from earlier in the week. However the cultures that were ran were negative. Emily received a bolus of morphine because they have to stop the drip to give the antibiotic, about 10 minutes into the the antibiotic, Emily was screaming in pain because her stomach was hurting so badly. Another bolus of morpine was given and she finally settled down to sleep and is calm. We learned that we can't give her benadryl through her peripheral line because it burns so badly that she cries. So they are going to just give her benadryl via oral from now on.

The band aid drive is really taking off, thank you so much. All over Massachussetts people are helping to my sister in law Tricia and Michelle to others in the area wanting to help, all the way in Grand Rapids with Ashley all the way to Pittsburgh, PA and then all the way back here in VA with Karen putting it at the daycare and her work and Emily's school wanting to get involved. (Im sorry if I left you out, but we are in just complete awe of all the people wanting to help with this band aid drive and see this make a HUGE success!!!) AMAZING and a huge THANK YOU..

Thank you to our friend Heather for starting Encouragement Cards for Emily event on facebook just to make her smile. She is going to love all the cards when she is home and seeing all the love from everyone. Thank you! Thank you also Heather for the bag of love you sent to Emily today via Sue, you put a smile on Emily's face.

Thank you to Mrs. Tetlow for stopping by to see Emily yesterday, she is sorry she missed you since she was sleeping, but she really loved the cards the kids mad her and the pillow case with all of her friends names on it. Thank you Mrs. Tetlows class, you guys are so awesome. Emily misses all of you.

Hopefully Emily doesn't get a fever over 101, because if she does, they will do cultures in the morning after the CH14.18 and then she will have to stay for 24 hours to make sure it is negative. NO FEVER, STAY AWAY, we are all ready for homebound. Homebound would be awesome right about now, because sleep doesn't really happen much here with all the beeping, all the nurses and worrying about Emily!

A huge thank you to Sue and Jojo. They have been a huge lifesend to us this week, they really have. Thank you! Sue has been taking Anna to school in the morning, being at bedside with Emily and I during the day, heading home and making dinner and having it ready for Daddy to bring it in the evening for us to have. THANK YOU. Jojo has been home, helping with Anna too, you guys are just totally amazing. Emily has really liked having Sue here and even asking for her and doesn't want them to go home Saturday morning. So, thank you Sue and Jojo for staying until Sunday, you guys are awesome.

If no fever, tomorrow we will pick up Accutane, Neurotonin and Emla cream from the VCU pharmacy and should be home tomorrow afternoon sometime. Emily will remain on the GM-CSF shot through 10/25. She has clinic on Tuesday to check labs, triglicerides and a few other things and if everythign looks ok, she will start her accutane that day until 11/5. 11/5 is her next inpatient day for the start of Round 2. She may also have to go home on benadryl for itching, but we can handle that. If she has low grade fevers, she can take tylenol at home. Hopefully after 24 hours at home, her energy level will pick up and the irritability will not be as bad and she won't feel so exhausted. We hate seeing her in pain and looking so sad, we really do.

Thank you again to everyone and all of your awesomeness, it really does mean a lot to us. Thank you!

Make sure you hug and kiss your kids goodnight and tell them how much you love them. Love you Jessie, Emily and Brianna. Good Night.

Anxiety

Tomorrow we head to the hospital for a week of being inpatient for Round 1 of Antibodies. There is a lot of anxiety that both dad and I are feeling and even Emily is feeling.  Its the whole not knowing what is going to happen, what she is going to feel and how things will go. All we want is for her to be comfortable.  We have a lot of anxiety about the extra line that she will need and how that will go.  We will keep you guys updated during the week of how Emily is doing and handling things.  Sue and Jojo arrived today, to be at our side and help with anything and everything that we need.  Thank you guys so much for driving 6 hours to be of huge help.

We got home yesterday from our long drive back from Michigan, and on the way home stopped at Buford Pharmacy to pick up the GM-CSF.  Thank you (you know who you are) for helping to make sure that Emily could get her medication, thank you!

Last night mommy went to give Emily her first shot with no nurses around and realized that the vials were not liquid, it was a white hard powder.  After dad and I researching and learning that the leukine was lyophilised (which is like freeze dried) that we have to reconstitute (which means mixing the freeze dried leukine with sterile water) the leukine.  So after contacting another pharmacy to figure out what to do, she said we needed to have a prescription for the sterile water.  So by then it was already 930pm, so I called the on call number.  The doctor on call tried to call some pharmacies close by but no one had anything, so at 1045PM, we were heading to the ER to have the nurses in the ER show me how to reconstitute the medicine and some to take home.  It was one of the quickest visits, but one that we shouldn't have had to take.  

Mommy was able to get her shot together tonight and give it at home, with no problems.  Emily is handling the shots really well and we are so proud of her.  Tonight she didn't even cry, she only said ouch, we are so proud of her.

Throughout this journey with Emily, it gets harder and harder with the treatment and what Emily has to go through.  However, we continue to charge on and even Emily does to, even though she wishes this was done and over (we do too).  We have noticed people who were once around and wanted to be around to help seem to have faded away or we don't hear from them, but we are still charging on!  While to some what Emily has to go through may seem old, because come December this will be 2 years Emily has been fighting, but this is never old for us, we continue to deal with this and day to day this is just something different and new that we deal with and teach our daughter what is happening to her. While dad and I try so hard to be so strong, it gets hard to be so "strong" when your 5 year old daughter says to you, "Why did you put me in treatment?"  

Getting Emily into this compassionate trial, we realize that our options are just getting smaller and smaller.  This too is hard to realize that her options for treatment are dwindling.  While we are honestly thinking that the antibodies is the best thing for her, and it is something her body has never endured, we still have to think about what happens if this doesn't work.  And if it doesn't work, what else is out there, knowing that her options are just getting smaller and smaller. 

Thank you Sydney!  

We also want to thank all of the amazing people out there who continue to do amazing things and be of wonderful help.  Emily loves for us to go to her mailbox and she has mail to open, I can't tell you guys how much it makes her smile. Thank you to Emily's little pen pa, Sydney,l for leaving a little halloween love with Sue for her to pick up. Thank you to Stephanie for the box of fun stuff for Emily and the cute hat.  Thank you to Linda and your sweet letter and love that you sent. We can't wait to meet you when we are in Massachussetts again. (Ahh Massachussetts, we miss all of our family there so much!! We love you guys!)  Thank you to everyone who has been such of wonderful help to us, THANK YOU!

Well, I need to get some rest, hopefully dad and I will be able to sleep tonight.  We had a great day with Sue and Jojo. Mommy made chili and cornbread for dinner tonight and we enjoyed hanging out with Sue and Jojo doing crafts and hanging out.Thank you guys! Tomorrow starts another journey with new therapy, and we are nervous with lots of anxiety, so please send your love and thoughts to Emily!

Make sure you hug and kiss your kids and tell them how much you love them.  We love you Emily, Jessie and Brianna!  Night!

Emily's Next Steps

I've tried several times this week to sit down and write, and seriously every time I go to sit down and write, it just gets harder and harder for me to write for some reason. I feel like my mind just wonders all over the place and I forget what I was doing or even what I was writing. This past week also consisted a lot of working with insurance to see if we could get the GM-CSF covered and anything else, and so far what we came up with, is that it would still be a co-pay that we would have to pay. 4 of the days will be covered by our health insurance since Emily will be inpatient during those 4 days, but the other 10 would have to go through our prescription benefits with a 20% co pay.

There has been lots going on this week. Emily had clinic twice this week, Monday and Thursday with both times needing transfusions. Earlier in the weed she needed platelets, but with the rate of her hemoglobin falling we knew came Thursday she would need a blood transfusion. Which by time Thursday came, she was a bit pale and she did new a blood transfusion. Her platelets were at 20, but to be on the safe side since she is still holding onto those 2 loose teeth and the possiblity of traveling, they went ahead and gave her platelets.

Dr Gowda informed me on Thursday that Emily was approved to start antibodies by the FDA, which for us this is awesome news. The last thing that was awaiting approval was CTP or something like that, he explained this as where the IL2, CH14.18 and any other medications that would be neeeded while inpatient.

Emily's Next Steps:
This next type of therapy that Emily will be going into, and hopefully the last, is monoclonal antibody CH14.18. There are guidelines for this therapy (since it is a clinical trial) that states you must start this within 100 days of finishing radiation (because all of the patients in the clinical trial, the information is for research purposes), well because Emily finished radiation last year the first of November, and we learned she didn't qualify for antibodies, she was denied to start since it was considered last year she was progressing. Because she went over the 100 days, we requested for compassionate use of CH14.18, which Dr. Sholler and Dr Gowda worked on to get Emily approval for. Monoclonal antibodies is A chimeric mouse/human monoclonal antibody with potential antineoplastic activity. Monoclonal antibody Ch14.18 binds to the ganglioside GD2 and induces antibody-dependent cell-mediated cytotoxicity and complement-dependent cytotoxicity against GD2-expressing tumor cells. GD2 is overexpressed in malignant melanoma, neuroblastoma, osteosarcoma, and small cell carcinoma of the lung. Dr Gowda talked with me about this therapy and I had to sign the consent forms that would be sent off to CTP to prep the medication that would be needed for VCU. We walked through the consent forms and he went through the calendar, because we were trying to figure out when she would start, with the hopes of not being inpatient during Christmas or Thanksgiving. With a tentative date of October 15th date as of Emily starting Antibodies, she shouldn't hit Thanksgiving or Christmas, but would hit the New Years Day Holiday, but I think that we would be ok with that.

So, it looks like this:

• 10/15/12: Round 1 (24 days) inpaatient on start of day 3 for 4-5 days with CH14.18 and 14 days of GM-CSF shots, that the ones done at home, mommy will have to give. She will also be on accutane for 14 days.
• 11/5/12: Round 2 (28 days) inpatient on day 24 for 4-5 to start IL-2. Go home for the weekend and come back 
• 11/12/12: inpatient on Day 31 for 4-5 days to receive CH14.18 with the IL-2. 14 days of Accutane during this 28 days
• 12/10/12: Round 3 (24 days) inpatient on start of day 59 for 4-5 days with CH14.18 and 14 days of GM-CSF shots, that the ones done at home, mommy will have to give. She will also be on accutane for 14 days.
• 12/31/12: Round 4 (28 days) inpatient on day 80 for 4-5 to start IL-2. Go home for the weekend and come back 
• 1/7/13: inpatient on Day 87 for 4-5 days to receive CH14.18 with the IL-2. 14 days of Accutane during this 28 days
• 2/4/13: Round 5 (24 days) inpatient on start of day 115 for 4-5 days with CH14.18 and 14 days of GM-CSF shots, that the ones done at home, mommy will have to give. She will also be on accutane for 14 days.
• 2/25/12: Round 6, no inpatient stay only requiring Emily to take accutane

As a parent, we have to admit, we are really nervous about this next therapy, but honestly with any therapy that Emily has been on we have always been nervous and worried about. We are thankful for our friends Sue and Jojo from PA, who are driving into town during the week of Emily's first inpatient stay to be of aid however they can help. Sue will help at home and be at bedside at the hospital wherever we need her. Jojo will be at the house. We thank you wonderful friends Sue and Jojo, for being such amazing friends and being by our side when we need you, THANK YOU. Sue thank you for offering to come and be by our side and help, this is definitly helpful for Doug when I stay with Emily inpatient, to help at home with Brianna or even be at the hospital. THANK YOU, Thank you for being such wonderful family to us. Dr Gowda explained this therapy causes a lot of pain, so Emily will be on a 24/7 morphine drip or fentanyl, and the pain should stop once the medicine stops. Her blood pressure could go up or down which could cause her to be placed on medicine to regulate it. This is the reason she will be in the PICU because she needs to be monitored and have nurses that only have 1 other patient. She could have high fevers, and whenever she has a fever, they continue to follow the protocol of doing cultures, however most of the time nothing grows on the cultures. He also explained, it is a 4 day stay, but that it could be longer depending on how Emily is doing, but it depends on how the doctor feels Emily is doing.

We have done lots of reading on Emily's nexts steps, but instead of assuming what we have seen/read for others, it could be different for Emily. Every child is different, but we will be keeping everyone up to date on how Emily is doing as often as possible.

www.nomorenb.org 

So we received notification of scans next week, with the late notification of dates, we will be driving. These scans are really for us and the doctors to know where Emily's stands when she receives scans after round 3 or so of antibodies to see if the antibodies are working. While we are in Michigan, we will be meeting up with Robin and Kyle Matthews, Ezra's parents. Ezra also had NB, and passed away from aggressive NB. Ezra's parents started a website, www.nomorenb.org, and they would like to interview us and do a video. While we are nervous about videos, we want to spread the awareness of Neuroblastoma and make people more aware and we look forward to meeting another family!

Thank you so much for the cards that Emily has received, they certainly bring a smile to her face. Today she received in the mail some mail from a 6 year old, Sydney who wants to be Emily's pen pal. How exciting, Emily enjoyed the pictures she sent and looks forward to sending her a little something back. Thank you again to everyone who has been so kind and loving during our journey, it really means so much to us.

Well, it is late and I need to get some rest, but I wanted to update and let you know where things stand. We will keep you up to date on our journey next week in Michigan with scans. We are still working on some things to get the antibodies started, but hopefully everything goes through ok and we don't have any issues.

Remember to hug and kiss your kids and tell them how much you love them!!!

Emily during her blood transfusion on Thursday