Round 4 of Avastin Trial

Tomorrow Emily is scheduled to start Round 4 of the Avastin Trial that she has been on.  She has clinic to check counts to make sure she is good to start, and if she is good to start, she will get pre-meds and then the Avastin that runs over hour and half. She continues to mostly eat pretty well, play and run around and just have a good time. 

We really have been enjoying home together as a family and enjoying one another.  Dad and I even have date night Saturday evening and enjoyed having time with one another while my mom stayed with the girls.

Last weekend, we had a weird day where Emily was throwing up, but there was no explanation as to what was causing it or why it was happening.  This past weekend, Emily wasn't eating much Saturday and Saturday night she was running low grade fevers and then over night she had some pretty high fevers.  Sunday low grade fevers and if she had any more high fevers, we were going to take her to the ER.  Thankfully she didn't, but again all of this happening with no explanation as to why. She also complained of her toes hurting, knees hurting and her head. All of which throws her dad and I to worry.  Its just a reality for us...to worry, to think and then worry some more, we worry about the little things. Even when things are good and she is happy and running around, we still worry.  We can't help it. Its the reality we live in... Why is she getting sick?  Why is she having fevers?  Is something happening in her body that we can't see?  However we take the days when she is feeling up and enjoy and play and have fun, we will never allow the worry to take us down.

I don't update often, because we often have these thoughts in our minds and they are hard to just not think about.  I try to update when big milestones are coming up or are happening so people who don't follow facebook, know what is going on.

Today we emailed the doctors and nurses in Michigan to let them know Emily is starting Round 4 tomorrow and to go ahead and schedule scans after day 15, which will be April 30th. We also explained about what had been happening and that while we hope it is all just normal things, we still worry.  The nurse replied and said Emily was slated to come for scans May 20th, which will delay Round 5 starting should everything be ok to move forward.  I explained that and she emailed back that Dr. Sholler moved some things around so that we could come for scans during the week of May 6th.  So now we just wait for emails with the times and actual dates during that week.  We are thankful that Dr Sholler understands that us families worry when unexplained things happen as they have and that we worry it could mean the worse.

Emily overall besides the unexplained things happening, has been doing great.  Honestly she has been doing awesome, always has the great smile. She is enjoying camping with Dad and I and family, has been doing really well with the Homebound teacher and just enjoying time with family and close friends.  Dad and I have noticed Emily has gotten very clingy to us, but it really is just Emily's nature! She is gaining weight and doing awesome.  We are proud of the fight that she continues to fight on a daily basis and the smile that she always carries and the love that she has for her family.  

We do ask that you think about the families who lost loved ones or were hurt in Boston.  Its a shame that we live in a world that we have to worry about these things happening, but something I have learned when bad things happen like this, there are some people in this world that you are so happy to have met and have such great people in your life.

Hug your little ones and tell them how much you love them

Update Emily's 1st Annual BandAid Drive

As you all remember:

Emily has had so many help her, love her and support her and she wants to give back! Giving back to the hospitals who have helped Emily will mean so much to our family!

Emily's Journey will be doing a band-aid drive for both VCU Medical Center and Helen DeVos Childrens Hospital! Both hospitals band aids in the clinic are done off of donations, and they go thru lots of them! We also hope to be adding in more hospitals should we receive more bandaids.

If you would like to participate, you can mail your bandaid donations to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

OR

If you are ordering from Smilemakers or any other company that will not deliver to a PO Box please use the following address:

Emily Hubbel
3530 Post Office Road #5383

Midlothian, VA 23112-9998

If you were wanting to help with Emily's 1st Annual BandAid Drive, but you don't live close by and you were worried about the shipping cost... well SmileMakers was very happy to be able to offer us a code for not only free shipping but also for 10 off all bandage purchases for this drive! The code to use at checkout is "MissEmily" and will be valid through 12/2/2012. So keep spreading the word. You guys are just amazing.

WE WOULD LIKE TO HAVE ALL BANDAID DONATIONS IN BY DECEMBER 3, 2012 so that we can present them to VCU and to Helen DeVos when we make our next trip!

Hey guys, here is the info needed for the bandaids:

--any brand is fine
--latex free (since some people are allergic)
--regular sizes needed to cover when children have shots or ports accessed

BandAid Drive

Emily and family will be doing a band-aid drive for both VCU Medical Center (Emily's Home Hospital in VA) and Helen DeVos Childrens Hospital (Emily's oncologist in Grand Rapids, MI)! Both hospitals use band aids and go through them like crazy and they are only done off of donations from people like you and I!! I can promise you that they go through lots of them!

If you would like to participate, you can mail your bandaid donations to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

Also needs for band-aids:

• any brand is fine
• latex free (since some people are allergic) 
• regular sizes needed to cover when children have shots or ports

If you are local and would like to drop them off directly, please email me at shannon@emilyhubbel.com to get the address.

Emily will be going back to Michigan mid December for scans, so we would like to have all bandaid donations in by December 3, 2012 so that Emily can present them to VCU and to Helen DeVos. We will take pictures when they are presented so that everyone can see them.

Thank you and please spread the word, all of your help is greatly appreciated and we thank you all so much for everything.

Thank you so much!

It Never Stops

Thank you to my niece, Katie, for making this. 

Its hard to believe that tomorrow is the start of a new month, October of 2012, which means today is the end of September. September is "Childhood Cancer Awareness Month, Spread the Gold". Today I was driving in my car and looked in the rear view mirror where I wrote in GOLD about emilyhubbel.com to spread the awareness. What surprised me the most is no one asked about it, no one asked who Emily is, not one person. I guess it surprised me that no one said anything, because I wonder if people are making themselves aware. So, today I wrote on the bottom of the back window, "Are You Aware?"  And if anyone asks, we have business cards for emilyhubbel.com, to spread the awareness. While today may be the end of September, it doesn't mean that we are done spreading the awareness about childhood cancer, about Emily and about the other kids who are fighting this nasty fight. We will continue to spread the awareness because it never stops for Emily who is fighting and all the other kids who are fighting. It Never STOPS!

Tomorrow Emily has clinic for lab counts to see where here counts are.  Hopefully she doesn't need any transfusions and hopefully her counts are on the up and up and she will be back in school by mid week. Emily has a cough right now, which at first she only had at night when she was sleeping, but she has it during the day now, so hopefully its just a cough and nothing else.  

We still haven't had an update on what is going to be covered with the shots that Emily will need for antibodies, so we hope that everything will work out and we won't need to pay out of pocket.  I know that we needed to send a copy of our prescription card over to have them review it through there, but we haven't had any update since then.  

We also are not sure when antibodies will start since we are waiting for the approval, so as soon as we know more about that, we will update you all about antibodies since we have had a lot of people asking questions about what it involves and why Emily needs it?

Again as it appears we will be traveling to Michigan during the week of October 8th, we will probably be driving this time since we are still waiting on dates.  The last email I had was from our nurse, Julie, from Helen DeVos who said they were working on dates, so we should be hearing soon.

Our fanbase picked up on facebook, so lately I've been getting messages on facebook from fans on things that are helpful for us and where to send things for Emily, and I just wanted to let you guys know the address is:

PO Box 5383

Midlothian, VA 23112

Things that continue to be helpful is gas gift cards for traveling, gift cards,and just cards for Emily.  Emily loves to check her mail and see cards that people make her.  She absolutely love cards, and she thanks everyone of you who sends her cards thinking of her, it puts a smile on her face.  Today Emily received a card from Ashley's Special Cards and she loved the card all done up with Justin Bieber. It was really sweet. 

We will continue to keep you updated on how things are going.  Keep spreading the awareness of childhood cancer and our children, and make sure you hug and kiss your kids and tell them how much you love them. 

(Don't forget pictures are posted on Emily's blog at www.emilyhubbel.com and for most up to date updates and pictures on on facebook at www.facebook.com/emilysjourney.)

Emily wearing her wig that she received through VCU. 

Finally an Update

This update has been long overdue and I apologize for not updating sooner.  Again no excuses, just no update.

While at this point, we are just waiting to get all the approvals needed for antibodies, Emily has a few tests that the FDA and NCI needs in order to approve her for the compassionate use of Antibodies. She was in need of a PFT and Echo. So, the Friday before chemo, her PFT was done.  That was such an interesting test, but she did well.

Emily had her 7th round of chemo the week of September 17th. Emily amazed us as each day as she begged us and the nurses was she done for the day so that she could go to school. While Monday and Friday during the week of chemo, she couldn't go to school, Emily made it to school the other days.  We are so proud of her and her strength. When she would get home she was exhausted, but was so excited to be with her friends and her teacher. We are also so happy that Emily has such a great school who has an amazing teacher and rest of the staff stand behind Emily and us.  Thank you Crenshaw Elementary. That Friday, she ended up needing blood and we knew come Monday when she had counts checked she would be neutrapenic.

As expected this past Monday, Emily was neutrapenic and platelets were extremely low requiring a platelet transfusion.  Neutrapenic meant no school for Emily until her counts come up and with an ANC of 0 we just have to wait for them to come up.  We came in Monday for lab counts and then left and went to have an ECHO.   Before heading to the Echo, I noticed that Emily had some bleeding in her mouth, Emily has 2 loose teeth with one of the adult teeth already starting to come through.  Can I tell you how exciting this is to experience something "normal"?  But also makes a parent whose childs counts are low that with the bleeding and low platelets, a bit unnerving.  Emily laid there and was just talking away to the technician who was doing the Echo about anything and everything, it was so cute. She said that the results would be passed over to Oncology by the next day.  After the Echo, we went back to the clinic where Emily required getting benadryl to get platelets and waiting for the platelets.  When the platelets were done she had a reaction causing a hive on her head, keeping Emily in the clinic longer so her nurse could keep an eye on Emily. Afterwards she had a hearing test, she hasn't had one in a year, so it was nice to know that Emily is continuing to do well.  She is borderline normal for high frequency and everything else is normal, we are so happy to hear this, because we were expecting hearing lost with the amount of chemo she has received.  This past Thursday, counts were unchanged and platelets were still low.  Dr Gowda wanted Emily to get 3 units of platelets because of her loose teeth and the possibility of bleeding over the weekend, but before she could get the platelets she would require benadryl and solumedrol which is a steroid to help with the reaction to the platelets. While getting the platelets, Dr Gowda wanted to talk. The results from Emily's echo, showed that the left ventricle was borderline normal and with this being Compassionate Use we are trying to get approval for, the FDA will require further testing and make sure it is normal. We also talked about the scans coming up prior to starting Antibodies  and what the Antibodies schedule will look like.  He did say that the GCSF shots that are required are not completely covered by insurance, and we would be required to pay 20% of the them.  They are still working with insurance to see if this is correct or how they can work around this, so we should be hearing about this soon.  Hopefully they can get this corrected somehow, they indicated that insurance doesn't cover these shots when requested a certain way, so we are just waiting to hear about that. 3 of the rounds will require 14 days of these shots. We talked about the inpatient stays of each of the rounds and how things work, the pain that Emily would feel, the morphine pump that she would be attached to and other things. All of this is things that we are aware of, however we do know that it ups her EFS (survival rate) up 20% and this is what we want for Emily. Dr. Gowda said he also reviewed the scan report from Michigan and according to what he reviewed, he saw the 4 spots were still being noted.  I was a bit confused by this because when we left, we were told that Emily had 3 spots left.  So I've put out an email to Dr. Sholler to get some understanding about this and find out about this. We also talked about how VCU's scans stated that she was clear and scans from Michigan show otherwise.  While this isn't something what we really want to talk much about here, I will say that he has someone looking into this and we will be calling Patient Relations in reference to this just because its a bit unnerving for anyone. Today Emily had a First Pass Test which is a nuclear scan that images the heart when they put some iodine into her line.  This was done for the FDA to make sure that Emily's heart was producing exactly what they wanted it to produce.  Later Friday afternoon, we received an email from Dr. Gowda advising us that Emily's scan met the parameters needed for the FDA. I can't tell you how happy Doug and I were to hear this news. It was one of those, "AWESOME!"  VCU's Institutional Board also met about the request of the compassionate use of Antibodies Thursday evening where Dr. Gowda was the representative from the Oncology group and was given a verbal appoval , so all of the paperwork is going to be sent off to NCI and FDA to get final approval. Hopefully we should hear something in the next 10 to 14 days. Doug and I are so anxious to get this done, because the big hope is that after the 6 rounds, Emily be done by early May 2013 and be done to treatment.  That is surely our hope, but we are not naive.

Our next steps are to get Emily's counts back up, she will have clinic again on Monday to see where things are.   Her ANC is still 0, so we are hoping come early Monday that her counts will be back up so that Emily can return to school.  Emily loves school and misses her friends and is ready to be back.   We are also happy that some of the parents who have touched based with us, and honestly that really means a lot to us.  Thank you!  We also need to check will Emily need to have another line placed to do antibodies, so we will be checking on that.  If this is something that is required to be done, we will most likely go elsewhere to get this completed.  As of right now, it appears that the week of October 8th we will be going back to Michigan for scans to see where things are prior to starting Antibodies.  These scans will help us know where Emily stands prior to starting antibodies and when she gets her scans after the 3rd round of antibodies we determine how things are going for her and if they are effective.  So, lots has been going on in the short period of time, but I have to tell you that Emily is doing pretty well.  She is happy and excited about her teeth that are loose, she is full of love and compassion and she is growing up so quickly!  We really are very proud of her.  She continues to take her medicine like she is supposed to, and we are just so proud of her.

As parents with a child with cancer, we just continue to move forward, while life is busy working full time, clinic visits, scans, traveling, the other girls, normal day to day stuff, the world just continues to go.  We watch Emily grow up,we watch the girls grow up and we are just so amazed at how fast she and the others are growing up. Emily honestly reminds me so much of myself growing up, that is just makes me smile. Dad has this connection with Emily, that is just amazing.  Brianna just celebrated her 3rd birthday, and is doing well in school.  She loves it now and wants to go to school, and loves her teacher Mrs. Robin.  We are so happy she is happy there, and she is working on the potty training.  Doug and Jessie will be celebrating birthdays next week also.  Doug's birthday is on Tuesday and then Jessie;' is on Wednesday and she will be 11. Can't believe she is going to be 11, my gosh has time flown by. She is growing up and doing so well in school, so we are very proud of her. Next week will be another busy week, Emily has back to school on Tuesday night (so hopefully counts are on the up and up) and Jessie has back to school on Thursday night, along with dance on Wednesday.  So, a busy week then with the next week most likely heading back to Michigan.

Sorry for the long update, just wanted to update you all on where things are.   Make sure you hug and kiss your kids and tell them everyday how much you love them.

Please think about our sitter, today after clinic we picked her up and brought her to the house to stay with Emily and during the day there was a severe thunderstorm.  I went to bring her home and upon arrival, we found that a tree had brought down a powerline and hit her house and there was some leaking inside of her home.  We are so happy that she wasn't home when this happened and tonight she is with her sister, but please think about our sitter as she goes through the motions of getting this taken care of.

Great Past Week

Emily's 2nd day of Kindergarden!!

Emily had an amazing first week of school.  All of the students were really good with her and she wanted to go back everyday.  We are so happy that she enjoyed her first week of school.  We are so thankful that Emily is in such a great place with great kids and such a loving teacher. 

Brianna on the other hand, had a hard time at school this week.  It was new for her, and new to be around a lot of kids that she isn't used to being around and just adjusting to not having a binky.  We are thankful that she is in a good place and they are working with her. We know it will take her some time and she will get used to it.

Jessie is doing well in 5th grade.  She has more homework this year, but to be expected with 5th grade.  

Overall this past week, was a great week and the girls did really well. We explained to Emily tonight that this week she would be in clinic all week for another round of chemo.  "I thought I was done with chemo!" We explained to her we thought she was done too and how she has 3 spots left and we need to get rid of them. Emily took the news well and we told her how proud we are of her for being such a good girl.  

Earlier this week, we heard some awesome news from Dr. Sholler. Dr. Sholler received approval from National Cancer Institute that Emily is eligible to receive CH14.18 compassionate use with an Echo and Pulmonary Function Test. These two tests need to be completed and sent over and hopefully can start CH14.18 within a month.  So, Emily will do another round of the Nifurtimox trial, 4 days of chemo with the Zometa, Day 5 Neulasta shot and then 3 weeks after the chemo, we will head back to Helen DeVos for scans to get ready to start Antibodies.  We are so happy that Emily was approved for compassionate use of the antibodies, this has been our goal to get Emily to antibodies.  After antibodies, we will have Emily on the DFMO trial that Dr. Sholler has, but that is to talk about when we get there. 

We are hopeful that with this round of chemo that her counts do not drop below 500 because if they do, she will not be able to go to school. It is likely that they will drop, but we will still remain hopeful. We did explain that to her, but we will see how things go. It has been absolutely amazing not seeing Emily laying on the couch these past few weeks, Dad and I have seen Emily run and play, laughing and having a good time.  It has been amazing and watching the energy she has. Yesterday we spent almost a full day playing outside, and the girls running and having a good time, and it was great to be outside with them and let them have fun (besides worrying about the West Nile). We didn't think she would make full days at school this past week, but we did and we are just so amazed that she did so well. Emily had her PFT on Friday, which was quite interesting, but she did pretty well with it.  We learned that Emily is 30 pounds, that is right, she is 30 pounds.  She hasn't been 30 pounds since diagnosis back in December of 2010, so we are hopeful that we can keep this weight up. 

So, please send all your positive thoughts that this round of chemo knocks out the 3 spots left and that Emily handles this round well. We also want to continue to thank all of the amazing people out there who continue to think of Emily and our family and for sending your thoughts and love to us, they mean so much to us.  Thank you again for all that you do.

Good night.  We will keep you up to date on how Emily is doing this week on the 7th round of the Nifurtimox Trial.  Remember to hug and kiss your kids and tell them how much you love them.

September is Childhood Cancer Awareness Month, spread the awareness.

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.

The Lows

Emily today on the couch watching a video on her ipad, tired.

The past two days, Emily has been in her lows. She doesn't have a lot of energy at all and really hasn't done a lot of moving from the couch except for going to the bathroom. Tonight I did get her off the couch and into the tub, hoping that it would make her feel a little bit better. She doesn't really want to be messed with by her sisters and just wants to be left alone, except to rub my arm or daddy.  Her eating has definitely decreased, enough to which has really concerned us. We are continuing to try and work with her and using the megace in hopes that we can just get her to eat.  She is eating a few things, but not a lot.  We obviously know the culprit and what is causing her not eat, however we are just continuing to hope that we can work around that.  We are on the last 2 rounds of this trial, and like Dr Sholler said it would be beneficial if she can handle the dosage that she needs. So we are trying.  What we don't want to happen is Emily has to go inpatient and be placed on TPN and lipids and we know she doesn't want to either. Plus the TPN will only set us back, so baby girl we really need you to eat.  I know she is trying really hard for us, and to us that means the world.

Tomorrow she has clinic, to have her counts checked and see where things are.  I am sure she will need platelets, not sure about blood, but it is a possibility that she may need that as well.  Its probably going to be a long day in the clinic.  We are going to imagine that she is probably at zero for WBC, which means can't calculate ANC.  So we continue to hope for no fevers.

This is going to be short tonight, I am tired and ready for bed, but really just wanted to update and let you know where things were for Emily.  Send your love and thoughts..

Dr. Sholler Rocks

Emily has one day left of this round (round 5), that being tomorrow. We will head to the clinic in the morning, have counts checked to see how her numbers are looking and then have chemo. Hopefully she won't need any blood or platelets because after clinic, we are volunteering our time at the Lemonade Stand. Emily will also get to take a picture tomorrow with the Therapy Dogs Group, "Dogs on Call" that comes in, with her favorite dog Stewie.

Emily during chemo at clinic 7-19-12

Emily has been doing ok this week, she has been falling asleep about 7-730PM this week and then getting up in the morning to go to clinic for chemo. During the day she seems to be doing fine, but during the evening she is a bit more tired. A couple of times this week she has complained of tummy pain, the first time we gave her zofran, but tonight we gave her some peppermint oil that we rubbed on her belly and that seemed to help a bit. As the week has gone on, she isn't eating as much, so we are giving her megace in the morning and evening with hopes that this will help with her eating. Thankfully she didn't have any side effects to the Zometa and overall seems to have done fine with that.


Emily will have her fluids tomorrow evening and then Saturday morning, I will be able to deaccess her. Sue and Jojo will be coming into town tomorrow afternoon to visit for the weekend and we are looking forward to relaxing with them. This round is already proving to be a bit harder on Emily than the last one. We would suspect that the increasing of the Nifurtimox the day before chemo up to 3 and keeping on probably has a lot do with that. We are hoping for no fevers, continued eating habits and no weight loss, so please hope and think about her during this time.

Have you guys heard of Dr. Sholler? She is one amazing pediatric oncology doctor that specializes in neuroblastoma and medulloblastoma at Van Andel Institute and Helen DeVos. When we last saw her last week, she said to us, " Please tell anyone that has been trying to contact me, I am getting back to everyone, it has just been taking some time and I am not ignoring them!" Dr. Sholler has really picked up a lot of patients and we are happy to see her taking these patients in and having "HOPE" and taking care of them. Dr. Sholler not only researches many drugs that can help these children, she also does a lot of research on the natural/homeopathic field of things, and honestly that is just amazing and she shares what she researches. Dr Sholler has a great way with interacting with these kids and most of these kids who don't normally react with other doctors interact with her.

About a week ago, Emily's bestest friend Sue and Jojo, made t-shirts with Emily's Hope Cure Childhood Cancer. They were making them and sending them to us and Sue asked for Dr. Sholler's address because she wanted to send her the Neuroblastoma pin and a t-shirt and a thank you note. Sue and Jojo, you guys rock and we love all that you do for us and other families.

Today we received a text message from Sue with the thank you note handwritten directly from Dr. Sholler. That is right, Sue got a "thank you" note from Dr. Sholler and my favorite part out of this note is "I do hope and believe that together we will make a difference". She said hope, what a woman to take a minute out to say "thank you" to someone who believes in her and what she is doing for our children. Dr. Sholler, we love you and thank you for all that you do for all of our families.
Just a quick update to tell you about how Emily is doing and Dr. Sholler. Please send out your love and thoughts for Emily for an easy Friday with no transfusions and no extreme drops of counts and a great weekend.

Is it Friday Yet?

Emily wearing her cap from
Beautiful and Bald Barbie! Let's see if we can get it made

We have scanxiety...and there is no way around getting out of that feeling that comes along with scans to see if the clinical trial that Emily is on is working.

Is it Friday yet? We are ready for Friday because this would mean that we have already flown into Michigan, had the MIBG Injection and had the MIBG/CT fused scan and already talked to Dr. Sholler to know where Emily's scans stand and we would be on our way home back to Virginia.

Emily had a great weekend, although the weather was extremely hot, the girls spent the weekend in the pool at home. We also got to see some fireworks again, which Emily really enjoyed and just being out of the house.

Monday Emily had clinic and her counts were looking good, she didn't need any platelets or blood and her WBC/ANC is up, so based off that information she is ready to start Round 5 of Nirfurtimox Clinical Trial (cumulative chemo round 13 -- WOW) She also handled getting her port accessed again like a princess with hardly no crying and definitely no tears. We are so proud of her.

Round 4 has been one of the weirdest rounds we have had yet. Emily overall did great, she has had energy (besides when her hemoglobin was low) and been playing and having fun. She never reached a point of completely stopping eating like she has the last 3 rounds, and she not once even reached having a temperature, or even fever watching. Thankful, it was nice and Emily right now is at 27.5 lbs, when last round we were at 25 lbs.

Tomorrow we leave for Michigan, again through a wonderful organization, Wings of Mercy, who have been so helpful to us the past few times we have made the trip to Michigan. Early morning, so we can get there and get the car rental, which Northern Air was so grateful to offer a discounted price, and get to the hospital to Emily can have her MIBG Injection. After than we will need to check into the Renucci House and get settled in.Thursday will be another early day of waking the girls up nice and early and get them moving early morning so that when it is time for Emily's scans, they both fall asleep. This has worked the past two times, so we are hopeful this works again.

Scanxiety is high. Our biggest worry (as any cancer parent) is progression. Emily has never been clear (NED - No evidence of disease) and this is one of our biggest hopes is to get the news of NED. HOPE!

We ask that you leave Emily lots of love and HOPE for scans to be better than last time or better yet NED. We also ask that you continue to spread the awareness of Emily and all the other children fighting childhood cancer. We will update more as we have more.

More Blood and Platelets

Another week of visiting the clinic twice a week.  Both Monday and today have been long days in the clinic for Emily. Monday Emily had clinic to check counts and she needed both platelets and blood.  Platelets definitely because her gums were bleeding when she was brushing her teeth along with bruises , but I asked that they do a blood transfusion since her blood counts were dropping so much and didn't want to make a trip over the holiday. After giving her the platelets transfusion while waiting for the blood, we were talking with a couple of other families and I noticed a bump on Emily's forehead, but thought it was just a bug bite, since she said it itched and one of the nurses saw it and said Emily was having a reaction and she had a few other places on her head.  She hasn't had a reaction in over a year, we were all shocked she was having a reaction an hour after the platelet transfusion had stopped, so they had to give her benadryl and wait for the bumps to go away.  By this time it was too late to even start blood, so it would have to wait until Emily's next appointment on Thursday. 

Emily did have a nice 4th of July and we all together as a family, which is really what it was all about.  Tuesday evening we went do to the James and saw the fireworks and enjoyed the works and then the 4th of July we cooked out as a family and enjoyed spending time together in the pool together.  It was a great time to spend together with one another and have each other.

Today another long day of needing blood and platelets.  Blood dropped quite a bit from Monday to today and it was quite noticeable this morning.  She was very sleepy and out of it. Later the benadryl to get platelets didn't help that.  However after some blood, Emily's color looks much better.  We worried about leaving platelets at 18 when Monday they were 14 (with platelets) and not getting any.  So we did request that she get them, because bleeding scares me.  I worry that she ever hit her head and starts bleeding and we can't stop it.  T.he head is one of the biggest worries.   Anything under 50 is just dangerous to play around with anyway.

Next week is scanxiety week.  Its been a long haul to figure out when scans were because they kept being changed from week to week and what days, but it appears that they have been scheduled for MIBG Injection on Wednesday with scan on Thursday. Scans for parents are always a huge worry, especially when on a clinical trial with a doctor away from home. We will leave on Wednesday morning and return Friday sometime. 

We watch Emily blossom and turn into a young lady so quickly.  The things that she knows are beyond her age and we are just amazed at how well she takes them. Just in February Emily had her broviac line taken out and now has a port which has to be accessed each time. Emily's anxiety builds each time she has clinic and she stresses and worries about the port being accessed.  Daddy and I are so proud of her as the past 2 times this week that she was accessed, that she barely made a peep.  She was accessed and did amazing.  emily we are so proud of you, you continue to blossom and grow and while we would give anything that you didn't have to go through this, you still continue to amaze us in your journey. I watch Daddy look at Emily in awe of all that she has had to endure and the way that she handles it. She handles this journey with such ease and we are so proud of her.

Emily gave her first Team Emily bag away on Monday to a little girl who was just diagnosed in May of Medulloblastoma, her name is Emily also.  Emily is such a sweet girl and we love their family.  If you would like to read more about Emily, you can read about her here on caringbridge: EmilyGriffin.  While I wished I had taken a picture, it was just as sweet to see Emily give away her first Team Emily bag. 

http://www.caringbridge.org/visit/emilygriffin/journal

Hope.  We are hoping for stable or better for scans next week and out of all seriousness we would really like to see better with continuing to see HMA and VMA low.  Better would be what we would really like to see, because if no change, we are really going to have a talk with Sholler about whats next and if continuing on the trial is the right thing to do when there is no change.  Of course the biggest worry is change meaning progressing, because... well I don't want to get to ahead of ourselves.

Hope everyone had a great July 4th!!

Quick Update -- Day 16

Day 16 of Round 2: Emily had clinic today and to our surprise Emily's counts are on the rise and she didn't need blood or platelet transfusions. And as a matter of fact her WBC is already starting to come up, where last time we sat neutrapenic for almost 2 weeks. Round 2 is nothing like Round 1 was at all, which does bring us a little bit of concern.

This will be a quick update, because we have to be up early in the morning and be at the airport by 7AM for our early departure and hopefully the girls won't be fussy in the morning for having to get up so early. 3 hour plane ride and fussiness. HMMM. Off to Helen DeVos Children's Hospital in Grand Rapids, MI to stay at the Renucci House.

I ask that you all say lots of love and thoughts to Connor and his family who is on hospice, but can't leave the hospital because they need to be able to control his pain. And also say lots of love and thoughts forMichael who is also on hospice. Neuroblastoma is such a horrible disease and so many children have lost their fight to NB in the recent, a cure really needs to be found.

I will keep you all up to date on how things are. I normally do small updates on facebook -- https://www.facebook.com/emilysjourney -- but I will update here as well! Please keep Emily in your thoughts as she has scans for re-evaluation to see if we should continue this clinical trial that we are on.

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

Round 2 New Trial Started

last week and has been completed...

Just wanted to put a quick update out there. I apologize there hasn't been an update in a good while. I have really pulled myself away from social networking as much as possible just from seeing and reading of other children passing or not doing well and from negativity that has been received.

Emily did have quite a bit of a hard time there for a bit prior to starting this next round, and it took her 2 weeks to get back where she needed to be in order to start the next round. She lost quite a bit of weight (about 5 lbs, which she didn't have to lose because she is already entirely way too small for her age), didn't want to walk from being very weak, and very fussy. Also her ANC and platelets and others were low which also contributed. They did take her off Nifurtimox for 7 days to help get her back on track. During this time she was taking megace (which is used to treat the loss of appetite) and each week we have been going up about 1ML. When the 7 days were over, we had the option to either stay off the nifurtimox or go back on, but if we wanted her to stay off of it, she would no longer be able to be on the trial. The positive that we are seeing is that Emily has had the lowest HMA & VMA levels that she has ever had since being diagnosed and are now within normal ranges, so we honestly feel like what we are doing is the right thing.

With the help of megace, Emily is eating well and has gained 2.7 pounds and is now at 27 almost 28 pounds, so the megace is doing its job. This past Monday Emily ANC and platelets were where they needed to be and she was able to start Round 2 of the Nifurtimox trial. So the chemo started. Emily's sister from Massachussetts was also able to be here and visit and helped with clinic during the chemo this week which was extremely helpful.

Chemo completed Friday after an extremely long week with long days at the clinic every day and each night Emily was exhausted and ready for sleep. She had moments twice this week where we thought she was going to sick, but she did not thankfully! So far her counts have not tanked and for that we are thankful, but we are being very careful to keep a close eye on her and making sure that she stays around healthy and feels as healthy as possible with no fever. As we all know fevers mean inpatient stays.

Scans have already been scheduled for the week of May 7th at Helen DeVos in Michigan, but we are just waiting on the final dates and times. Our hope would be just to drive our own van since last time we had to leave on the weekend and be there 3 days before the scans and couldn't take our youngest with us and stay in the Renucci House, however with gas prices that probably won't be possible. So if any of you are interested in sending gas cards, we would love that because they would be extremely helpful to make a trip from VA to MI.. If not we will be looking into seeing what either PALS or Wings of Mercy can do.

Top: Jessica (BF), Myself, Jessica (Cousin),
April (sister), Elyssa (daughter), Jessie (daughter)
mine Lana and Sheree (RM Friends)

Lastly yesterday a group of 8 of us did the 5K ASK Walk for the ASK Organization which helps the clinic where Emily and many other children are treated and also helps the school where Emily goes when her counts are well. "Team Emily" ended up making $695 and without the help of all our fans and friends, we would have never made that. I was very happy with the outcome and next year hope to make a bigger "Team Emily" and make more donations! Again thank you so much family, friends and fans for helping making this possible. It means so much.

I want to continue to say thank you to everyone for your continued support, because it totally makes things possible for us and I just want to say thank you! Thank you! Thank you!

Remember to hug and love your hugs and tell them how much you love them. Please also send your love and thoughts to Krysten Nicole Collins who is fighting Neuroblastoma as well and not doing well right now.

Options

I'm fighting severe exhaustion tonight as Emily went to bed late last night, for me to wake her up early today to have a bath and breakfast  

and so that Emily would fall asleep in her MIBG spect scan. I'm also sorry if I haven't updated as much, but internet service is rather patchy hear at the Ronald McDonald House and we forgot our Wifi service.

Yesterday we went to the hospital, Helen DeVos for the first time. Such a beautiful and new hospital and lots of wonderful people. Emily's nurse Julie, is awesome, very attentive and great with Emily. Emily had her port accessed for the 2nd time ever since having it in order to get her labs and MIBG Injection.  It was a bit more traumatic than it was the very first time, but we were expecting it to be but she really flipped out. However once it was in she said it wasn't as bad as she thought but she still didn't want it to be messed with, but she did get an prize. We were also explained that she would need to be either accessed again the next day (today) or just leave it in, and Emily was adamant that it be taken out understanding that she would need to be accessed again today! But she would need to have an IV again for the scan today because of the CT contrast that would be needed. 

I didn't sleep well last night for many reason, but of course one of them being part of this and what Emily is going through and what options would and won't be available to Emily...This morning after Emily and I ate breakfast I received a phone call from my mom of news that I didn't want to hear. It was rather heart breaking and one that I didn't expect. She said she wanted me to hear it from her first and not someone else...my father passed away overnight and was found this morning... while my father is not one that I have been close to for many many years and we haven't talked in probably the last 7 years, it was still rather heartbreaking to know that he passed and that he never met my husband, that he never met Emily and Brianna and only met Jessie whens he was very young was hard.  I had hoped one day that he would get his act together and be a different person.. Although we were not close and biologically he is my father, and I considered my stepfather to be more of a father to me, it was still really hard to swallow, but yet at the same time I knew that I did try to make things work with him a while ago.   Anyway, I am not saying all of this to say I want anyone to say "I'm sorry" it is more because I want people to realize that anyone very close to you or family could be taken away from you tomorrow and you are only left with what you last knew of them, but love all those that are close to you. Anyway, this really didn't start the day off that great.

Emily took her 3rd accessing pretty well today, she did cry, but she did better with it.  The tape over the needle is hard, because some of it hits where they had to cut into her skin to place the port and she screamed with that, but overall we were so proud of how well she did today. Letting Emily go to bed late last night and getting up early, definitely helped with the scan today at 1pm. Within about 10 minutes of the scan Emily had fallen asleep, she can't move at all for this one since the CT scan is fused into the MIBG so she has to be in the same exact position.  But the falling asleep really helped her for the 90 minute complete scan.  The ladies in radiology were very easy to work with and were great with us.  I was so proud of her for doing so well with the scan, especially when prior she cried not wanting to have a scan.

After the scan we went to meet on the oncology floor with Dr. Sholler. It was awesome that we didn't have to wait long after the scan. Helen DeVos talks very highly of the spect MIBg and once Sholler came in and showed us the scans, we can completely understand why everyone speaks so highly of them.  So again in basic terms, Emily scans are stable...the spot in her skull, L4, illiac wings, femurs were still showing. They did see a spot on her spine in the T9, however they are not calling it new because with a regular MIBG scan it would be very hard to call because of everything around it that would show on the MIBG would not be MIBG Avid.  The 360 CT/MIBG scan was rather amazing because it showed everything and showed whether the spots that Emily has are either in the cortical bone or soft tissue, and they all showed cortical. There was an additional spot in her skull but she didn't call it a spot, she said that Emily has some sinusitis going on which showed that spot.  So we have 7 spots that Emily has instead of 6 (that constantly changes) that we need to worry about and that we want to one day get rid of.

So, the options and what was available from Dr. Sholler.  Sholler is amazing and she was great with Emily and Emily took to her very well! She is very gentle, personable and easy going with Emily, and us which made things go a lot easier.  The hospital has a much slower pace than what we have been used to, so it made the experience much easier on us and not so stressful. Dr. Sholler knows her stuff and could answer questions with ease and we felt comfortable with her.  She didn't rush us and try to get us to hurry or make a decision with what she had thrown at us, she sat there and answered all of our questions and walked through everything step by step and even writing it out. Emily does qualify for 3 of Sholler's trials. TPI-287 with Irinotecan and Temozolomide, Nifromax with Cyclophosamide and topetecan and then DFMO with Etoposide.   We spoke to her and she stated that she felt that Emily would be eligible for CH 14.18 Antibody Therapy should we be able to clear more of her disease, but that she felt that she was eligible for the HU 14.18 for relapsed/refractory disease and wasn't sure why we were told she was not.  So, they were looking to see if we wanted to go that route could that get that opened for us there. She walked through everything with us and then said she didn't want us to make a decision there, but that how about we come back in the morning after we have had some time to sit on it and and we can discuss it further after we have had some time to think about it. So we will meet with Sholler at 9AM tomorrow to talk about things and answer any other unanswered questions.

So with scans 2 weeks ago and we are still sitting at stable, Dr, Sholler still feels that shooting for NED and looking for a NED Party is possible. She again used the word that we have HOPE.  We are no where near close to this journey being over and traveling just appears to be a bit more than we had really thought, however like she said if we don't do anything because she still has disease in her bones, that yes it could still spread and we don't want that.

Doug and I have had some time to talk about things, look over the paperwork that Sholler has given us and once we make a decision on what we would like to do after making the decision with her we will update. 

We will be flying home Saturday through the Wings of Mercy again.  We have to get the rental car back by 5 pm tomorrow night and the Ronald McDonald House said they would bring us back to the RMH.  However our flight to head home we need to meet the pilot at Holland, MI instead of Northern Air where we came in, so we are waiting to hear if the RMH can take us there, because if not we are going to have to see if we have any other options.  But we do need to get home and get Brianna home and also I will have a funeral to attend.  We are ready to be home, its been a long and exhausting week.  We are overwhelmed with decisions and we miss the kids.   The Ronald McDonald House too is very strict here, so if we have to head back here at all, we will look to stay at the Renucci House instead of here.

Remember to hold all those that you love close and near and dear to your hearts and always tell your kids how much you love them and hold them every night.

We are in Grand Rapids, Michigan

Long overdue journal entry...here it comes...I know when I start receiving emails, text messages and facebook messages asking how Emily is doing that it has been a while since I updated, and I apologize.

Since we got home from Philly, Emily has done well, The port finally started to feel better and where they took the broviac out wasn't feeling as sore. When we got home we started working Helen DeVos to get an appointment set up. We didn't want Emily not being on treatment for too long so we wanted things to move quickly. Thankfully, Dr. Sholler was able to get us in March 7th for CT scan fused with MIBG on March 8th. They also wanted to do a bone marrow biopsy but because Emily had already had one at CHOP on the 23rd and no treatment after that, they were able to use those results, which were negative. Thursday Emily will have her MIBG scan and then afterwards we will meet with Dr Sholler to talk about the scan and talk about the trials that they have to offer.

Thursday Emily had a clinic visit at home and we were able to talk with Dr. Gowda for a little while. This was also Emily's first time having her port accessed. They used Emla cream and overall she did fine with the port being accessed, I think it was just the fear and anxiety of it all. I have to be honest it is so weird not having to flush her lines daily which I have done for the last 14 months and doing weekly dressing changes, which I have also done for the last 14 months. Dr.Gowda also didn't understand why CHOP didn't have any other trials that Emily would qualify for and didn't understand why Emily didn't qualify for the HU 14.18 Antibodies. Antibodies/Immunotherapy is supposed give children an additional 30% EFS (Event Free Survival Rate) and this is what we want for Emily. Dr. Gowda looked over the trial and couldn't see why she didn't qualify for it, so he was going to check with CHOP and see what he could find out. He did print out stats on the temolozide and irenotecan chemo that they wanted to put Emily on and really the numbers were not all that great, however if it works, then it works. Dr. Gowda indicated to us that he worried about putting Emily on any type of Phase 1 trials right now when she has a great quality of life and no problems with anything except for a tad bit high on her thyroid levels and we agreed with him. He also indicated to us that after we visited with Dr. Sholler that we really needed to make a decision on what to put Emily on because he didn't want her off treatment too long and she progress. This too we agreed with. So, although we are making the trip to MI, it doesn't mean that we will go with any of the treatment that they have, but we wanted to have options if they are better for Emily than just the chemo.

We were able to schedule a flight through Wings of Mercy and everyone through the organization were/is amazing. We wanted to leave Tuesday, March 6th before we needed to be here, but the closest that she had was Sunday March 4th, so we worked with what they had. So, we had to make sure Brianna could stay with my parents and Jessie went to her dads a day early. We were told that Helen DeVos does not allow siblings into their clinic because of risk of infections, which we think this is great most clinics should do this.

Emily on the plane

Thanks Mom and Brian for taking Brianna and taking the van from the airport. Wings of Mercy is an amazing organization and the pilots were great. Very friendly. This was Emily and mine first time on a small plane, and we both did fine, no problems. I was a little worried about my anxiety with the flight, however overall it wasn't bad, there was moments and mostly I was trying not to be too nervous and let Emily see that. It took about 3 hours to get to MI, however if we were to drive it is about 775 so approx 13 hours away. We got into the FBO airport and someone took us over to the main terminal to pick up our rental car and then head to the Ronald McDonald House. This would be our first time staying at a Ronald McDonald House and they were able to confirm that we should have a room with no problem (nothing like Philly) but we also had a room at the Renucci House if there wasn't anything at the RMH.

The plane that we flew on to head to MI

Emily enjoying time with Sue and JoJo in the pool!

Emily's bestest friend Sue and JoJo made the trip (6 hour trip) to come visit Emily and Doug and I and they got a hotel and made sure the hotel had a pool. Emily was so excited to be able to come to Michigan and meet up with Sue, she has missed her and then get to get in the pool. Thank you Sue and JoJo, Emily absolutely enjoyed the day and being in the water.

We did get a call today from Helen DeVos that they had scheduled Emily for an EKG on Wednesday as well, because if we decided to go with one of their trials that some of the trials would require an EKG, so we were ok with that. We are anxious to hear what they have a available here, and everyone from facebook when we noted about being in MI has been so friendly and kind. Thank you all so much for your kindness and welcoming us to MI. I think at this point we are not nervous about anything, we are just anxious to get things into the next mode and know what we are doing.

Overall, Emily is doing great. Her hair is coming in quickly and she is so excited about that. She said she can't wait until I can put pigtails in her hair. She is enjoying going to school once a week for 3 hours (next week they will offer it twice a week) and she is so happy to be around other kids. Emily is so excited to learn and be around other kids. She is starting to gain weight and she is almost at her weight of 30 pounds where she was when she begin this whole journey 14 months ago, so it is so nice to start to see meat on her bone and not see just the bones. She is thriving and we are really happy about that, and so ready to be past this journey.

Thank you to everyone who has been so helpful and continues to be. The meals that have been coming from Fairy Godmother Project, have been amazing and ever so helpful. The very friendly people and the fundraisers that have been started in my mom's area and even by some local friends are so wonderful. We are very thankful to everyone who has been so kind. The gift cards continue to be of so much help and we are so thankful to all of the wonderful people who are just so wonderful to our family and send some and continue to do so. We can not tell you how much help they are! My cousin Mandy sent me a message and said someone wanted to send Emily a special present that she will pick up when we get home and we can't wait to see the special present for her. We will be sure to take a picture and share. Thank you Tricia and Lynn for making the Team Emily bags and when we get home we can start making some bags and we will be able to take them up to the hospital. We are still collecting coupons to make bags for families and will continue to do so until we can get a huge stash of items, but we are so excited to be giving back to newly diagnosed families. Thank you Sue and JoJo for always sending huge amounts of coupons and for bringing a huge stash of things for the bags. Giving back is excited and makes us feel good for all the amazing things that people do for us. I am sorry if you have emailed or sent messages and I have responded, life has been busy, but I will try to get back to you all soon. Thank you again for all you have done and continue to do, it means so much and we constantly appreciate all that you do.

Well, I am going to call it a night. We are getting up early to meet with Sue and JoJo for breakfast before they head back home. Remember to love and kiss your kids every night and tell them how much you love them. Love you Jessie and Brianna! Good Night.