Day 13 New Trial

Its been a couple of days since I updated to let you all know how things are going.. Emily had clinic on Thursday at VCU hospital and Emily's counts hit rock bottom. .1 White blood Count and Emily's hemoglobin was very low, so she needed a blood transfusion and she needed a platelet transfusion. The chemo made her counts drop quickly. We were worried that if she were to get a fever, what would we do when we need to be at Levine's on Monday morning, for Day 15 complete Physical by Dr. Kaplan as part of the protocol on this trial. Levine's stated we would come once we were released inpatient from VCU. It was a very long day in the clinic, we closed the clinic that night. We got home and Emily seemed to have a bit more energy from the day before.

And just like that, 1 hour later and Emily was exhausted and had no energy, laying on the couch saying she was tired. Checked her temperature and it was 99.7. CRAP, fever watching was not on our menu for the night or weekend. At one point, Emily was quite warm and we called emergency number and they said to bring her in. I continued to check her and it stayed under that number of taking her in, so we didn't take her in. I was up every hour on the hour checking her temp. We did tell Emily that we probably would need to go to the hospital and Emily cried and begged and pleaded not to go. She told us she was scared and that she didn't want to get chemo anymore. A 4 year old pleading not to go to the hospital saying she is scared and would say, "If I drink water will it help my temperature, right mommy, right daddy?" Both Doug and I were crying and watching our daughter plead with us not to take her, pulls your heartstrings, makes your heart hurt and just want to fall to the floor and cry.

Friday morning, Emily still continued with a low grade temperature, but we started the day like we normally would during the week days, and Emily was being very clingy and wanted to be carried everywhere. We knew we needed to take her in, and then received a call from our nurse, asking where we were and that the physicians wanted to see her and maybe give her some antibiotics and take it from there to see if she needed to stay inpatient.

No fever while we were in the clinic, but they did access her and gave her antibiotics and checked her counts again. Hemoglobin and platelets looked good and WBC went up by .1, so we left her accessed so she didn't need to be accessed again on Monday or even over the weekend in case she did become inpatient. We went home, which Emily was happy about and we took a nap. When we woke up the low grade fevers started again getting close to the magic number where we would need to bring her in. So, it was another long night of being up every hour to 2 hours checking her fever and seeing if she was ok.

Today, has been a better day, not as far as energy levels because she has no energy and doesn't even really want to walk around. She has been laying on the couch for the past 3 days with no energy and she is not eating. We are giving her periactin in hopes to get her to eat. Her weight was checked and she has already lost 3 pounds in 2 weeks of starting this trial and that is not good. Emily only had a popcicle, a few bites of macaroni and 1 minibite corndog. She can't afford to lose weight and we worry about the thought of having to put her on TPN. Today she has also been running low grade fevers, but she has been laying around all day being very clingy.

Tomorrow morning we leave early in the morning for North Carolina. We are going to head to Aunt Karen's house and stay the evening and leave early for Emily's appointment on Monday morning. It will be nice to only have to take the van and head there and then after the appointment head home. However Emily cried today about not wanting to go anywhere, she just wanted to stay home, so we are hoping that tomorrow will go much easier. Emily has been laying down and hasn't wanted anyone to mess with her, she just wants to be left alone. We hate to see Emily like this, we hate to see her down and not want to be running around playing.

We ask that you continue to keep Emily in your thoughts as we go through this trial with the hopes that this trial does what it needs to do. VCU has been great in handling Emily and we appreciate that.

We also ask that you keep Ila Jean in your thoughts, Ila is fighting for her life against this horrible disease, neuroblastoma.

Going to end this tonight, because we have an early morning and the past few nights have been light on the sleep. Make sure you hug and kiss your kids and tell them how much you love them.

Fever Watch

Fever watching sucks! It sucks for her because she is just exhausted and wants to sleep and it sucks for us knowing the meaning behind it and what will happen should she get it! It's De ju vu (spelling), we remember this like it was yesterday! This is one of those things we hoped would not happen!! Fears of fever, because if it goes up it just means she will have inpatient stays! We have not had an inpatient stay since January for MIBG therapy and Emily cried tonight when we talked about getting a fever and what it would mean! Auntie was here and listening and watching her cry, brought tears to her eyes! Kids hate the hospital, so the fewer the stays the better but what can you do! Our hearts hurt tonight just knowing what is coming! We are still home, but please send your thoughts they just stay away, she needs a break!

Day 11 New Trial -- No FEVER PLEASe

I'm sorry I haven't updated to let you all know how day 8 went and that we are home, it's been busy!

Day 8 Emily had a complete physical by Dr Kaplan and everything looked great and counts were checked! While waiting for her counts to come back, Emily wasn't feeling well and got sick so they gave her some zofran! Counts came back and we were shocked to learn that her WBC was already below 1! Certainly not what we wanted to hear because any signs of fevers mean inpatient! He also got the neulasta shot and she did very because I asked them not to make a big deal and just do what they needed to do!

Since she didn't need blood we decided to drive home, long ride home made for a late night but we made it home!

During the week Emily has done fine however yesterday we noticed Emily didn't have a lot of energy and she didn't want to be messed with at all and wasn't really in the mood like she wasn't feeling well! She had playful moments and then other moments where she was very down!

Today marks day 11 and we are here at VCU having counts checked and see where things are! Emily counts are severely neutrapenic and her platelets and red blood are low! So we have made it a day at the hospital of getting blood and platelets! It makes for a long day here! Emily has fallen asleep rubbing my arm and is ready to go home!

We are worried because Emily is severely neutrapenic and on Sunday we were scheduled to leave for north Carolina for a meeting and a complete physical with Dr Kaplan on Monday! If Emily is inpatient here because of fever how will that work!?? Our nurse contacted the research nurse there and she said well she will just need to come here once she is released from vcu Our hopes is that we have no inpatient stays due to fever and just keep charging forward! That would be our hopes!

Here it Is 8 pm and we have that feeling that the fever is going to come which is going to cause inpatient! It was 99.7 up to 100.4, hit 101 and she has to go!

So I ask you tonight tell the fever to go away and find somewhere else to go! Chemo we do not like you but have faith that you are doing what needs to be done!!

Love and hug your kids and tell them how much you love them! Give some love to Ila Jean and brook Hester who are both progressing! Love to Ethan as he is moving into Mibg therapy soon! Love you guys!

Day 7 New Trial

We are into the end of day 7 of the new trial! Thankfully the 5 days of chemo is over and we are only into the nifurtimox 3 times a day!

Emily had a great day yesterday only complained of the tingling in her feet and that it hurts a little bit! We enjoyed the day and went to aunt Karens for a couple of hours and Emily and aunt Karen made cupcake brownies for mommys birthday! Emily said all day to me, "Happy Birthday Mommy" and was so sweet wanting to have birthday blowers, hats, cups and all! We ordered pizza and enjoyed a few hours with aunt Karen and uncle Jimmy! We enjoyed the time but Emily was ready to come back to the camper after a couple of hours! Thank you we had fun!

Emily could not sleep last night for anything! It was after 1 AM that she finally went off to sleep! Brianna was after midnight, so it was a long day!

Today was a different day, one that we didn't expect, because we thought it was going so well...Emily woke up and was laying around all morning and ate two bites of pancakes that she wanted! So far she is still taking the pills by mouth with applesauce now, hope that doesn't change! We had to wash clothes and while waiting for lunch Emily was drinking sprite and out of no where got sick! It was the weirdest thing, she said her stomach hurt and she got sick! She ate a little for lunch, but not much! And only ate a few bites for dinner, so we know her tummy is bothering her! One of the likely side effects of the nifurtimox is gastrointestinal disturbances such as anorexia with weight loss (loss of appetite), nausea and/or vomiting so the longer than she is on this we expect this and we expect her to not feel well! We are trying to keep on top of it and eating and all of that and may have to start periactin here soon! Thank you Megan for the invitation to dinner tonight, Emily just wasn't up to doing much tonight hopefully we can meet up soon though!

Today was the St Baldricks event in our home area and my best friend, Jessica, her husband shaved his head in honor of Emily! Tim thank you for doing this in honor of Emily, we have not even had the chance to meet you yet, but to do this in honor of Emily is amazing! Jessica and tim's son, Adyan, is Emilys little best friend! They play together so well! Again thank you Tim!

Tomorrow is day 8 at the hospital, Emily will have to be accessed again to check counts and have a full physical by Dr Kaplan! If her hemoglobin is low she will need to have a blood transfusion, and then we will head home after the appointment and pack up the camper! Emily does not want to go home and in some ways i am with her because it seriously would just be so nice to have a day off, a day off not to worry about work and anything else, but gotta get back and get back to work and see Jessie! We miss Jessie and can't wait to see her, life has to move on! It will be a long ride home but we are so ready to get home! We are hopeful that emily does well on the way home and does not have any tummy troubles or even any troubles in the clinic in the morning!

Please send your thoughts that Emilys counts have not dropped too drastically and that she be neutrapenic yet! Emily does have to get the neulasta shot tomorrow and this will be just as traumatic as the port being accessed!

Remember to hug and kiss your kids each night and tell them how much you love them! Have a good night and we will try to update tomorrow evening!

Day 5 New Trial

Yesterday Emily completed the 5th Day of her new trial of the Nifurtimox trial with the 5 days of chemo. Although the chemo was completed yesterday, the nifurtimox will continue. She will continue to take the pill 3 times a day for 21 days, so basically the entire time she is on the trial. So far she is taking the pill 3 times a day with no problems, but honestly she has always done really well at taking her medicines, so we are happy about that.

The last day of chemo yesterday went well...the anticipation was building for Emily of taking the line out of her port that had been in since Tuesday and she did so well keeping that line it with the port tape on top. The port is still taking some getting used to for all of us, we worry about hitting it when we pick her up because there is a needle there and hurting her. However, it is nice when the needle/line is out because the pool/water/tubbies are not off limits like it was before. Sometimes we wish that we had waited on taking her "Make a Wish Trip" to Disney until later but she had a blast then, so we are ok with it. It is still our goal to get her to the Williamsburg Great Wolf Lodge with her sisters this summer. With all that she is going through and continues to go through she deserves to have some fun with her sisters and us and her sisters enjoy some time away to have a blast. Hopefully we can get her there when counts are good and everything thing else. Anyway, I digress, after the chemo, it was time to get the line out and she cried as soon as they started to touch her she screamed and when I say screamed, it was a bloody murder scream and quite loud to the ears. It took a while to calm her down, but as soon as she calmed down she was fine, but all she wanted to do was to go back to the camper because she was tired.

Five minutes after being in the truck, she passed out asleep, it actually freaked me out because she was out so quickly and when I say out, she was out that Doug asked should we take her back to the hospital. She was out and her head was flopping, I was just really nervous about it as well as Doug. We got back to the camper and brought her in and she was awake laying her down and she seemed much more awake, so the screaming and all the medicines have just taken a toll on her body.

We have noticed the Nifurtimox is really doing a number with her sleeping with either completely passed out or keeping her awake. She can't sleep at night when it is time for bed and she has always been one of those to go to bed with no problem. The Chemo seems to have a few side effects as well, because she is still complaining that she has some tingling in her feet which is the neuropathy and the she isn't very hungry in the morning, but by lunch and dinner she is ready to eat and she eats well. Her counts are dropping a lot quicker than we thought they would, so we are watching what she is around (anyone sick) and keeping the amount of people she is around to a few.

This weekend, Nanny and Pop and the girls Aunties are camping in Luray, VA at Yogi Bear, we so wish we could be there with them, but it was a 6 hour drive from here in SC to there and I think honestly the drive would be way to much for Emily right now because we would then have to drive back here in NC for the hospital Monday Morning. Monday possibly will be another long day because Emily may need a blood transfusion.

Thank you to all the families and nurses at Levine's who have been incredibly nice. Doug and I really took note of how nice everyone here is like they were in Grand Rapids, MI. Everyone talks to everyone and it is just so wonderful! The infusion room was great and filled with great nurses which was wonderful for a long week with families who were so nice and talked to everyone.

Its been a very long week here in the NC/SC area, since we are staying in SC about 20 minutes away from the hospital. The traffic here is horrible and takes a good 30 to 40 minutes in the morning to get to the hospital and you can never depend on how the traffic will be. The traffic is much like Philly. Everyday for the past 5 days have been early mornings and long days at the hospital, but she has taken it well.

We are sending all of our love home today who is doing a Hubbel Family Fundraiser for Emily today by the mommies of Richmond Mommies, we wish we could be there! Thank you for all that you do it means so much.

For all the fundraisers that have been done for our family means so much as we continue to fight this fight with Emily! It means so much! Thank you feels so little with all that you all do for us and it we seriously cannot thank all of you enough for everything that you all do for us.

Thank you so much to everyone who has wished me a happy birthday on facebook and sent text messages today, it really means a lot. My birthday wish today is for Emily to be NED and that this trial does what it needs to do, the rid of this cancer.

By the way, we should be getting the Emily Bags next week to start making the bags for the newly diagnosed families at VCU Medical Center, please continue to send your coupons or items if you want to help supply the bags, so that we can help pay it forward to other families. It is important to us and Emily loves to give to others. Emily loves to make other people happy!

Thank you Aunt Karen for allowing us to stay next weekend on Sunday night for a one day hospital visit on Day 15. It really will make it easier not to have to take the camper and just stay the night and move forward.

Well going to spend some time with family and make some brownies. We will continue to keep you all updated on how Emily is feeling and doing. Thank you again for all of your love and prayers that you send and all that you do for us.

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

Day 4 New Trial

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Here we are Day 4 is just about done and ,we are going into Day 5. Last night Emily complained of her feet hurting because they were tingling, which one of the side effects are neuropathy and she also had a really hard time going to sleep.  She cried because she was tired but could not go to sleep.  I held her tightly and she ended up dozing off to sleep around 130 AM. 

Today was a long day in the clinic with counts and blood draws that are required for the clinical trial that Emily is on and day 4 of the chemo. She is doing well with the chemo, better than we thought she would and for that we are happy.  

Her counts are dropping quickly especially WBC and platelets.   Her hemoglobin was also a bit low, so it looks like she may need a transfusion next week, so we will see how things go. We have noticed that Emily stares off into space and seems to have a bit of confusion, but again is taking this really well.  She is not hungry in the morning for breakfast like she normally is, but has been eating very well for lunch dinner and later dinner.   

I will say that Emily does like the clinic here at Levine's, they have rooms for you in the transfusion rooms that are yours to go into and have time to yourself or a table in the middle where the kids can get together and play and you can still see the kids from the room.  Emily has really enjoyed the room and playing with the other kids who have come into the clinic.  Today Emily met another little boy who is fighting leukemia and played with him and had a good time such a sweet boy. 

Tomorrow is Day 5, last day of Round 1 of this trial's chemo and she will be deaccessed and be free for the weekend.  We are hoping she will be feeling well, but we have been taking this one day at a time and honestly minute to minute at a time because it changes so quickly. Monday she will go back for Day 8 and have a head to toe physical with Dr. Kaplan and check her counts to see where she is before heading home back to VA and get the neulasta shot (she is going to absolutely hate this).  We are hopeful for no transfusions, but we will see what happens.

This is a quick update that I wanted to do after working for a while tonight and I am not posting a picture today, but I wanted to update you all on how Emily is doing.  Its been a long and exhausting week and Doug and I are ready for a date night to have some time alone.  

Make sure you hug and kiss your kids and tell them how much you love them.  Sending love to you Jessie, we miss you!

Day 3 New Trial

Last night we went to Doug's Aunt Karen's for dinner who lives in South Carolina about 20 minutes from where we are staying. This was the first time meeting Aunt Karen and Uncle Jimmy for us and we had a goodt night. It was a very nice and relaxing night and with great company and great food. Emily also really enjoyed making cupcakes with Karen and and enjoyed it. It was nice to be with family, but also nice for Emily. Thank you!

Today was Day 3 of the new trial, and so far no major problems have really been noted. Yesterday was the first day of taking the Nifirtimox for a full day (3 times a day). We have to crush this pill and put it in juice and she takes it by syringe. The medicine doesn't completely dissolve in the juice so she is eating a lot of the crushed medicine, but doesn't seem to mind.

We were leaving the hospital today and she almost seemed like she was "high" and Doug watched her head move all around. He asked her if she was ok, and she said she was, I think she was more afraid if she said any problems she would have to go back in today to the clinic, but I told her we didn't. Just a little bit ago, she said that she felt funny in her head, and we are thinking probably dizzy. Tremors and off balance are some of the common side effects from the nifirtimox. The nifirtimox is reversible when stopped for 24 hours and whatever the side effects were should go away, so we just have to keep a close watch and keep notes of what is happening. After the "funny feeling" in her head she did eat some lunch and felt better but was tired and fell asleep a little while ago.

We did see Dr. Kaplan today in passing and he felt that if Emily wasn't having any side effects yet from the chemo, that we probably won't see any. I hope it stays that way, watching a 4 year old throwing up, is an image that isn't an image you want to have in your head. We haven't had to use the peppermint oils, but we have them readily available for when we need to use them if she has any tummy issues or anything.

We really didn't tell Emily that we were starting her on chemo again, but just explained that she was going to have to get some medicine because all the yuckies are not gone yet. Today another little girl was in the clinic for a brain tumor, and this girl was such a sweet girl and just very well mannered, but told Emily she was getting chemo today and Emily said yeah I was getting my chemo too. It sucks that she has to have chemo and it sucks even more that she has to endure this. Like we said before we have been dragging feet with this and really not wanting to do it, but in our hearts we felt it was the best thing for her right now.

We still have 2 more days of clinc with chemo both days and tomorrow she has PK's (pharmacokinetics) where they do additional blood draws at certain times and we are there longer than we want to be. I also wanted to check to see if they will do a CBC just since they will be drawing blood anyway to see where things are and to see how her counts are going to be for the weekend.

We did learn that Round 1 of this trial has to be done through Levine's Childrens Hospital,unless she has any fevers we will do that wherever we may be at the present time (either home or Levines) but when the next 21 days start (Round 2) we can actually do the chemo at our home hospital and then come back after Round 2 to do scans. This is great for all of us. We still need to make the decision if the scans will be either at Levine's or with Sholler, Dr. Kaplan would like them here, but we would like them with Sholler to keep the scans in one place and know the difference between one scan and another. After Round 2 we will have disease re-evaluation and decide if this clinical trial is still appropriate for Emily.

Just trying to keep everyone up on how Emily is doing so far with the new treatment. We hope that it continues to stay well with no sickness or any of that, but we will continue to charge the battle line and hope that we get to that line and see "NED".

Continue to send lots of love and thoughts for Emily as she continues to go through this! Thank you to everyone !!!

Day 2 New Trial

Last night before leaving the hospital we ended up having to get Emily Deaccessed because she could not stand up straight without the dressing tape she had pulling the line and she crying or even move her arm with the same thing happening! Dressing changes are no fun so we opted with just remove it and we will re access it today! Again today she had a hard time but they used a port dressing which is not sticky in the middle and she did much better and could actually move her arm up and down!

Emily was not very hungry this morning and we were worried about already seeing the side effects of the chemo! She said her stomach was upset and she thought she was going to throw up! Zofran was on the way and it seemed to help! And then she was able to eat a little later!

This sucks to put her thru this shit again that we went through before! It sucks knowing that she is going to lose her hair again and her counts are going to drop! We can deal with it but it still sucks! And this is still hard to deal with on us both!

Fluids and both chemos went with success! We did talk with the research nurse today and went over the calendar and what we will be doing for the next two rounds! We have to be back on day 8 which is Monday and then home and then back for a day visit on day 15! Counts will be checked on day 8 with a full physical and a nuelasta shot (to help boost her white blood counts) and then back on day 15 for a full physical and checking counts! There was a bit of an issue with them wanting us to give her a daily shot of the neupagen and we didn't want to have to put her through more hell if we didn't have to! So they were able to change it!

We did finish up the chemo and she did fine with leaving the port in! Yeah! they showed me how to remove it should we have any issues! Hopefully it stays well and no problems! Tonight we will give her zofran before bed and hope it helps in the morning with her stomach and we will also take her peppermint oils with her and those will help!

We will continue to keep you guys updated with how Emily is doing! Please continue to send your love for this to be easy going and no problems!

Day 1 New Trial

We got into the campground late last night and ended up getting to bed late so everyone was exhausted and didn't want to get up this morning!! Plus I heard the alarm go off and turned it off and fell asleep until a little late! Oops!

A new area and a new hospital to adjust to! Its nice here and so far everyone has been very nice and we really liked Dr Kaplan! But its been a long day here at Levines today!

We met with Dr Kaplan while the girls played and went over preliminary about Emily and then talked about the trial and any questions we had! Emily had to be accessed again today and she screamed and cried and then once it was in she was fine! She seems to be having a harder time with this access with it staying in saying it hurts to raise her arm and is holding it, but eveything looks ok! This has to stay in until Friday so I am hoping that she handles it well! And there are no problems!

Overall her counts look great and everything looks good, so we just wait while fluids are going now which need to go for an hour! She did take her nifurtimox well with no problem by crushing it and putting in apple juice and then taking by syringe (go dad, great idea!!)! She will have to take these 3 times a day (today only twice)! Once the fluids are done the chemo will start!

Doug and I have been dragging feet about the chemo starting again, it's still hard to swallow that we have to do this and that she still has spots that don't want to go away! Please put all your thoughts into this chemo and pill doing it's job, because I know we are!

So by 605pm Emily will have blood drawn for the trial and hopefully we will be out of here by 630! A long day and a long week ahead!

I will continue to keep you all updated on how Emily is doing!

Mar 18, 2012 3:35 PMIts been a week since we have updated...this was the first week in 14 months that Emily has had a whole week off with no hospital visits at all! It was nice but we kept busy! We kept Emily busy with family and friends visiting so she could have a good week! She had a blast!We came home from Michigan last weekend and instead of heading home we went to Emily's fundraiser! We played bingo and Emily was running all over the place and just having a good time! Thank you to family and friends for doing these fundraisers for our family and and for being so amazing! Short post today just to say thank you to everyone for all that you do and all that you continue to do! Thank you for keeping us in your thoughts and prayers!This week Emily starts her new treatment, this treatment was really hard decision to make but we believe it is the best one! We keep thinking that if Emily was NED, that we would be coming up that we should almost be done with her treatment but we are no where near close to being done and that has made it hard for us! I will keep you all updated and let you know how treatment is going! Send your thoughts and love! Lastly send lots of love to Ethan Hallmark who has relapsed, he will be restarting treatment next week, we love you Ethan!Love and hug your kids and give them lots of kisses!

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.