Quick Update

We received an email from Dr. Sholler today letting us know that the bone marrow and MDS are both completely negative. This is good news, because if the marrow were positive for MDS we would have to stop the current regiment that Emily is on. Thankfully that is not the case, and her marrow looks good.  Doug and I meet with Dr Gowda on Friday for clinic and to go over the options that we were given. Again we will most likely go with two more rounds of the avastin/irenotecan/temodar that she has been on. She has been handling that very well, with minimal sickness, and even gaining weight, 

 

 

Emily was so excited, she was able to ride the school bus yesterday for the first time with her BFF.  It's a big deal for dad and I to let her ride the bus and even harder for dad. Dad drives Emily to school every day and walks her to her class, so this is hard on him. But it is also hard on us because of germs and worrying about the other kids, but we also know we can't protect her from everything. However Emily is doing great and loves it.  We do know that there seems to be lots of sicknesses going around, so that is another concern for us, worrying about her getting sick since her immune system is compromised, which could mean hospital inpatient sickness or even fatal. We are constantly on her about keeping her hands washed and hand sanitizing her hands often during the day. If flu season is as bad as it was last year, Emily will be staying home and we will have the home bound teacher come again. 

Just a quick update. Remember to kiss your kids and tell them how much you love them. 

Only 3

It was been a long few days back in Michigan with leaving Tuesday evening, getting accessed, needing platelets, getting letter to Emily's teacher for the parents, bone marrow, needing blood, MIBG/CT scan, and talking with Sholler.  But we made it through it.

Emily is so strong and amazing and we watch her as she gets accessed and she is taking it so well and we are so proud of her.  She was so strong when she had to go for her bone marrow and she was again amazing for taking it like a big girl.  Handling the MIBG/CT scan although her toes were bothering her, but she did it and we were so proud of her.  How can you not be proud of a 5 year old little girl fighting, fighting so strong to be all that she can be.  She makes her dad and I so proud, so proud to be her parents.

7 spots, only 3 spots are left and 2 of those spots are almost gone and the last one is getting smaller.  This is amazing. The spots that were on her skull and 2 on her spine and 1 of her femurs is gone, they are gone.  We have never seen such amazing change since we have started this whole ordeal.  While we previously reported Emily was clear from the scans from VCU, we knew that these scans were not optimal as the ones in Michigan.  A regular MIBG scan to a fused MIBG/CT scan is a bit different. A regular MIBG scan you can only see the top and bottom of the body, where as the MIBG/CT scan , the two are fused together, and you have a 360 angle view and 3D.  The technology is amazing.  After Dr Sholler looked at the scan from VCU she can see how the scan was considered clear, however from doing the 360 angle 3D, you can see right down the middle and actually see the spots.

So what does this mean?  Currently there isn't antibodies available, such as CH14.18 or HU14.18.  We truly believe that this will clear her and keep her in remission forever.  We want to to get her there. At one point it was said we could do Sloans 3F8 which if we wanted to set up a consulation we could, but we really didn't want to go 3F8 unless we had to. After Dr. Sholler reviewed the scans, she feels that Emily is having excellent response from the Nifurtimox Trial and she said have another 1 to 2 rounds of it along with the Zometa and melatonin.  We did explain all the bone pain that Emily experienced during round 5 when she had the Zometa and I asked her how can we stay on top of it?  She said I can give you a prescription of Decadron and you can give it to her at the start of the pain and that should help.  I asked her about platelets taking longer and longer to recover.  She said what we can do is instead of 5 days of the chemo is do 4 days, so on the 5th day she would actually receive the neulasta. Because we finished the 6 round trial, we are not required to follow it to a "t", so we can work around things and do what works.  So we will do the nifurtimox 3 times a day again, along with 4 days of chemo, zometa on first day and the melatonin at night.  Also because the 6 round trial is complete, she doesn't have to start next week, she can go to school and enjoy being a kid and go to school and meet her friends, enjoy being a "normal" kid in school, this is what we want her to do, she deserves this. While we were there, we asked her if Emily would qualify for compassionate use of CH14.18 and she said she would call and find out, but felt that she could work it out and if they approved it, we could do it right at our home hospital and would only need to come to Michigan for scans as we are already doing.  While talking with her, she said you know let me call while we are sitting together.  She called and has already starting making connections and will see what she can do, but that it would take a couple of weeks.  So, we are hoping to hear from her soon that she made the connection and they are going to allow Emily to get the CH14.18.

Tonight we were watching the Stand Up to Cancer that was on.  It was amazing that they talked about Childhood Cancer, and one of them was about Neuroblastoma. Childhood Cancer needs the awareness and this is amazing.  The amazing Taylor Swift sang a song called "Ronan" about Ronan Thompson who passed from Neuroblastoma.  Have you purchased this on iTunes yet?  All proceeeds will go to Childhood Cancer Research.   Ronan is currently number 2 on iTunes, and we want to see it make it to number 1.   During the show Emily said, "Mom do I have cancer?"  I wasn't really sure what to say, so I looked at Doug and said help me, he said just answer her.  I said, "Emily, what do you think neuroblastoma is?"  Emily said, "Cancer!"  Tears started to swell in the eyes and I could see Doug's face, but we followed her lead to see if she had any other questions.  She didn't question anything, so we moved forward.

Emily is really looking forward to starting school next week, so Monday is a big day for her.  Her platelets are low, so she won't be able to do recess, or anything wild and crazy, and Tuesday morning she will have clinic to check her counts to make sure everything is looking ok. We are really excited about her starting, but extremely nervous but aren't all parents when their kids first start kindergarden?  Yes they are.  Emily will do fantastic.  The Monkey in my Chair has been great for the kids at Crenshaw so they know they have another member of the class, and know when the monkey is there that Emily will not be there.  The monkey goes with them wherever they go, so I think this is great for the kids and for Emily.  Today the Education Liason came to talk with the students about Emily.  We are not really sure how it went, but we imagine that it went well and we are happy that she went out to do that and talk with the students about Emily.  To all the parents of Emily's classmates, we are open to any questions that you may have, just please let us know.

So, here is where we stand.  We are very happy with the outcome, and feel that Emily is going to make a full recovery, while we still have a long road ahead of ourselves, she is doing amazing right now, and her weight is looking great right now too. We hope that this next round or 2 of the Nifurtimox trial knocks the 3 spots out and off to CH14.18.

Make sure you hug and kiss your kids and tell them how much you love them.

A Little Update

Well its been a long week and while I have wanted to update a few times this week, I just haven't. Lots of changes have headed our way and we still have more to come, but we will adjust just as we have to everything else.

Emily overall has had a good week, she is still eating really well but still losing weight (back to 25.9 lbs) and handling it all really well. As expected her counts are zero this past week (or to be exact .2), which means she is neutrapenic, so homebound we have been. This weekend we were going to go school supplies shopping for the girls, but with Emily's counts being low we have to stay away from the stores. We hope to get it done once her counts come back up, so hopefully later next week. Emily had clinic twice this week, and both times she needed platelets since they have been low. Thankfully she hasn't needed blood since the week during chemo, but have a feeling it will be sometime this coming week she may need blood.Monday she also received her shot in her leg for neulasta. Thursday she had to be accessed twice though because the first time, she was crying it was hurting waiting for her counts to come back, so Elaine (Emily's nurse) had to deaccess her and we waited for counts to come back. When they came back, she had to be accessed again since she needed platelets again. Emily has clinic on Monday again for counts check.

Friday the sitter called me at work to let me know that Emily was complaining that her toes were hurting. She tried a warm tubby and some tylenol, but still later was complaining that her toes were hurting and she was crying. Daddy went out and got her footbath with bubbles and warmer with some epsom salt. We did try that last night, and she said it helped a little. She woke up a couple times from sleep complaining her toes were hurt. Spoke with Dr. Sholler and she recommended stopping the nifurtimox for 2 days, so she will start that back up on Monday if her toes are not hurting.

We did finally hear from the scheduler yesterday afternoon and Emily will have a complete re-evaluation when we go back. Emily is scheduled to be back in Michigan the from September 5th - 7th with MIBG fused with CT scan, Bone Marrow, injection, meeting with Sholler and hearing test (we haven't had one of those in a year). So I started working on getting a flight on Thursday since I had known we were going to be there Wednesday and Thursday, just didn't have the rest of the information. We love Wings of Mercy and they have been amazing to us, but I did hear back from Sharon from WOM and she told me because the week we need to be in Michigan is a holiday week, she still hasn't heard from anyone who was willing to take the flight. Not exactly what I wanted to hear, so she asked me to start looking for a 2nd option. So, Monday I am going to check with a few others, but we are thinking if we can't find a flight, we may have to drive Not exactly what we want to do right now, with gas going up and I even noticed yesterday it had gone up about 10 cent over night, so we are really hopeful in finding a flight. Gas in Michigan is also much higher as well, so we are hopeful. I also need to call Monday and get the Renucci House set up. We will keep you guys up to date, on how things are going with that though.


Also last week the Henrico Citizen ran an news update about Fairy Godmother Project and about Emily. I will post it on www.emilyhubbel.com.



We will keep you guys updated on how Emily is doing and flight to Michigan. Remember to always hug and love your kids.

Long Day #1

Its hard to update via the phone because we dont have internet here at the campground! It's still great to have somewhere to stay that is taken care of! We are exhausted from traveling to and from, running around and appointments, so early nights for us!!

Today started fresh and early of 5 AM and a long day at the hospital!

First was labs, HMA & VMA and bone marrow aspirate and biopsies and while she was under they changed her dressing! It was nice to meet another mom of a little girl that we follow! The bone marrow aspirate went ok but Emily had a hard time coming off the propofol again today and was very irritable and crying! The nurse was great and gave Emily a small dose of morphine and that helped take the edge off and calm her! Dr bagatelle was great as well coming by and checking in and everything! We were in recovery a lot longer than expected, then she needed her MIBG injection, get her CT prep and then about an hour talk with the doctor about antibodies! I will talk about that in another post to tell you about it! We finally left the hospital by 4pm exhausted to head back to campground! getting back here by 630 pm, so long 12 hour day is definitely exhausting!

Tomorrow is another long day with her scans and several tests! She said all the results she should have Wednesday so we can meet and talk about those and then head home! The only result that won't be back is the HMA & VMA because that can take 4-7 Days!

Night all send your love, thoughts and prayers for Emily! Clear scans!!!