Scans Soon // Bandaid Drive

Gonna try this update again, started on this earlier, and I lost everything I wrote.  So hopefully this time, I won't lose it.  I was going back looking to see the last update, and the last update was in August, wow guys, I am sorry.  If you are looking for updates, we tend to update Facebook more often, so I apologize.  But you can go to Facebook at www.facebook.com/emilysjourney.

November 1st, started Emily's 3rd Annual BandAid Drive. Emily's bandaid drive started 3 years ago, which is so hard to believe. We started this because one day we had clinic and Emily had been poked and was wanting a cute bandaid, which always turns the frown of getting a shot or poked into a smile, the clinic was all out of them and they had to give her a brown bandaid. I remember asking the nurse why they didn't have any character bandaids and she said because the hospital only purchases regular ones and character ones are donated but that they normally don't get many.  Emily said she wanted the clinic to have character bandaids for all of her friends so that they could all smile and this is what started the bandaid drive.  Every year it has become more successful and we have added in other hospitals each year to help out as well.  The first year we collected about 3000 boxes and the majority of them went to Childrens Hospital of Richmond, but some of those went to Childrens Hospital of Pittsburgh and we also sent quite a few of them to New York for Hurricane Sandy Victims. Last year we collected just a few over 5000 boxes and many of those boxes again went to Children's Hospital of Richmond, Childrens Hospital of Pittsburgh, University of Virginia Childrens Hospital, Childrens Hospital of the Kings Daughters and Renucci House in Grand Rapids, MI.  We have a few boxes left from last years that we will be taking to Helen DeVos Children's Hospital soon.  If you are interesting in bringing a smile to all the kids fighting in hospitals who have to get poked, please send fun, character, colored bandaids that are any shapes or sizes and if possible latex free still intact in the boxes to: Hubbel Family, PO Box 5383, Midlothian, VA 23112.  I promise you the bandaids definitely go to good use to our hospitals and the kids love them.  Please keep spreading the bandaid drive and send a few boxes in.  We would love to see the drive get more than 5000 boxes this year.  There are so many schools involved, many veterinarian's offices, small doctors offices, and many other places.  Please help if you would like to bring some smiles.   They definitely bring smiles to Emily to help the hospitals.

The last few months since we have last updated have been pretty busy. Emily, her sisters, Doug and I got to meet family that we have never met before.  They got to meet their grandfather and grandma (grandad and Mimi), great grandma, great uncle and aunts and uncles.  The girls have definitely loved meeting them and enjoying spending time with them.  There is still plenty of family that we have not been able to meet, but in due time.  The best part of meeting family that we have not met is having a bigger family and also that they are behind Emily's Journey and supporting her.  The last few months we have had a few clinic appointments as well as eye appointments and kidney and liver checks.  Her counts are looking great and continue to go up, actually the last clinic appointment her platelets were 193. WOW.  That is amazing.  She was having lots of headaches that she was complaining about, so we had a couple of eye appointments and determined that she needed glasses, and since having them she hasn't been complaining as much, only hear and there.  So that makes us feel better.  She was pretty nervous at first about having the glasses and wearing them to school, because she thought the kids were going to make fun of her, but she hasn't had any problems and she looks great in glasses.  Her kidney and liver numbers continue to look ok but we also check her urine markers.  Those too have seem to remain stable since our last time in Michigan.  She does still complain of dizziness from time to time with the headaches.

This is the first year that Emily has been able to go to school everyday.  She is in 2nd grade, but has never had where she has been to school everyday and both Kindergarden and First Grade she was at home more than she was at school.  She is definitely enjoying the fact that she is at school and getting to meet other kids and have more friends.  She loves her friends and enjoys having playdates with them.  The biggest thing that Dad and I are noticing is her short term memory.  She forgets things that happen during the day very easily.  She also said she has noticed that she can't run as fast and keep up with her friends.  But again she is happy to be attending school and only having to go to clinic a couple of times.  Dad definitely enjoys going to have lunch with the girls as often as he cans, and also does WATCHDOG at the school where he is there all day and can spend some time with the girls in their classes.  It is nice that he can do this though, because he can really see what is going on at at school.   Overall though, Emily's quality of life has been great and we are so happy with where she is.  We continue to hope that this is how things will stay.

We have a busy rest of the year coming up though.  Thanksgiving is coming up and the we are all excited about getting to spend time with family that we don't get to see often, so we are all very excited about this. 

Right after Thanksgiving, we have scans in Michigan at Helen DeVos Children's Hospital.  So we will be ready for travel to leave VA on Monday, December 1st with a stop over in Pittsburgh, PA and then continuing on Tuesday, December 2nd to Grand Rapids, MI.  She will have clinic with accessing her port, labs and urine markers, as well as hearing test and MIBG Injection on Wednesday.  Thursday she has her MIBG/CT scan and we meet with Dr Sholler after scans for results.  Depending on results she may have a PET/CT scan schedule with bone marrow biopsies.  We continue to hope that her scans are stable or better and that she can continue on her current trial of compassionate use of DFMO.  So we are heading for another 1500 mile drive, so if any of you would like to help with Gas Gift Cards, they really come in handy in our travels (Exxon, Sunoco, Shell, BP, Sheetz and only a few of Wawas are definitely ones that we pass), or grocery gift cards.  These would definitely help with our travels and definitely thank you guys so much for all of your help.  If you would like to help, please mail them to: Hubbel Family, PO Box 5383, Midlothian, VA 23112.  If you have any questions, please email me at shannon@emilyhubbel.com.

Its hard to believe that on December 23, 2014Emily will have been fighting neuroblastoma for 4 continuous years.  This girl continues to amaze us and all that she does.  And she continues with a smile.  She asks us often when she will be done with treatment and when she can take her port out, and Dad and I both wish we had an answer for that, but we continue to tell her that she is doing a great job in all that she is doing.  Please continue to keep Emily in your thoughts as we are coming up on scans.  Anxiety is going to start to build as we get closer and closer to scans like they always do.

Please make sure you hug and kiss your kids 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

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.

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!

Always Thinking Ahead

It's been a long week in Michigan but these trips normally are long, but this one especially with the added 13 hour drive! We left Monday evening making a pit stop in Pittsburgh, our half way mark at Sue and Jojo's for a break and then back on the road to Grand Rapids! We ended up making it around dinner time Tuesday evening!

Emily needed platelets Wednesday along with being accessed and the injection which makes for another long day along with sheer exhaustion! The nurse also showed me how to give a subcutaneous injection to an apple to learn how to do it so that I could give Emily her 14 days of GM-CSF shots that she will need!

Thursday was the longest day with MIBG/CT fused scan and then meeting with Sholler! These are the days we dread with never knowing what the results will show!

As always Emily does such an awesome job on her scans with not needing sedation in so long and hanging in for the long scan being completely still! We are so proud of her and being so strong! Mommy felt so bad because Emily doesn't like to put the video goggles on, so when the imaging is not over her head, I hold the iPad over to watch something thru the video! Well the strap broke and hit Emily in the head after having held it for 20 minutes leaving her with a nice bruise on her head, but through that she didn't move, just cried! I felt so bad, I wanted to cry for her and with her! Bad Mommy!!

So results...we waited to meet with Dr Sholler again this morning to update because we wanted her to go over the final scan report from radiologist and also the review from the tumor board..stable! While last month we previously reported that Emily had 3 spots left of the 7, this was not accurate because results were given to us before the final read by the radiologist! While we really didn't want to take back what had already been posted about the 3 spots back from September and people feel we not know what we are talking about, this is also Emily's Journey through neuroblastoma, a childhood cancer, and one day we want her to be able to go back and be able to read this, so we feel the need to report what the scans final report showed! Emily needs to be able to read later in her life what was going on and we feel it is also important to us because we go back and read this from time to time!! Again the scans show stable with all 7 spots still there, some have a mild uptake from last scans, some have decreased uptake and others are unchanged! Right now her VMA is normal and her LDH is normal, so we take this with positivity and move forward! However we are always thinking ahead! Wanting to know what therapies are coming up and what should we do if antibodies doesn't work!

So ahead we move...on to Monoclonal Antibodies CH14.18. Monday being Emily's start date, admission to the PICU! We will monitor her HMA/VMA each month and see if they are going up, if they do plans may change (always thinking ahead). But for now we charge forward with our hearts saying this therapy is going to clear her, we know it! Scans will be scheduled at Helen DeVos in Grand Rapids after either round 2 or 3 of antibodies to see how things are going!

Today Emily received her first dose of GM-CSF in the clinic, which mommy gave Emily her first shot! (ugh not sure i could cut out being a nurse, but i love being my kids nurse if they feel more comfortable) I was a little nervous but at the same time Emily seemed to have a different comfort of mommy giving the shot over the nurse! She sat in the nurses lap crying and the nurse walked me through it and mommy gave Emily her first shot! After it was over Emily said, "that didn't really hurt!" Emily always seems to amaze us, ALWAYS! Gave Emily a high 5 and a hug and she was off running down the hallway back to the playroom playing with the other girls in there! We should be home sometime tomorrow to pick up the GM-CSF from Buford Pharmacy and I will give her daily shots for the next 13 days!

Please send your love and thoughts as Emily endures this next therapy! Monday they will determine if Emily's veins can handle a peripheral line to handle the therapy along with her port, if not Dad and I need to decide what to do (central line? Pic line? Or give her another portacath or remove the one she has and give her a double? Yes the decisions we must make) please also send your love and thoughts to dad and I as we go through this next therapy with Emily!

We did get to meet up with Ezra's parents (Because of Ezra) Kyle and Robin Matthews while waiting to see Dr Sholler! While they didn't have time to film our story about Emily, we were still happy to meet up with them! They hope to make a trip to Virginia to film Emily's story, which would be awesome, as we would love to be part of their 800 stories of 800 children to spread awareness! 800 days is special to them because Ezra lived 800 days! Check out www.nomorenb.org and 800days.org!
Kyle and Robin thank you for stopping in and meeting up with us, it was a pleasure to meet you!

Other Updates

--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, so if you would like to participate, you can mail your bandaid donations to:
Hubbel Family
PO Box 5383
Midlothian, VA 23112
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!

--We are still working on bags for newly diagnosed families beginning this journey into childhood cancer if you are interested in helping with this as well!

Thank you reading our update! It was long, but thank you if you read all the way through it! Lots going on and coming up, but we are hanging in there! We are anxious about Monday, but we will get through this!

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