How is Emily?

It is the million dollar question that gets asked often and normally the first question we are asked.

Overall Emily is doing well. Round 10 was actually delayed by a week because her platelets were not recovering. They were at 19 and held the round off and gave her platelets. When she went the next week to start they were 23. Dr Gowda actually likes them at 30, but allowed her to start with platelets on board. Day 4-9 was her chemo, and she already started the not feeling hungry and very tired before the chemo started. So, once the chemo started it was even worse.  Dad tries to go everyday that he can to have lunch with her at school to make sure she eats.  This past week she was scheduled to go Friday to have her counts checked, but we noticed Wednesday night that she was bruising pretty bad and Thursday morning she had petechia on her arm. When counts came back, everything actually dropped. Her ANC although not completely low, but it was the lowest it has been in a while, so we are just keeping watch to make sure she doesn't get sick. Platelets were down to 13 which is the lowest that they have been in a long time. So, they gave her 3 units of platelets and want her back tomorrow to check counts and most likely getting platelets. So all weekend including Halloween night we have been very careful to make sure she doesn't hurt herself. She didn't make it long Halloween night though because she was so tired from a long day at clinic and the chemo she is on.  Thursday will be day 15 of avastin and complete this round. 

We just learned Friday that Emily will be heading to Michigan the week of November 11th for scans on Wednesday and Thursday. It makes it really hard to make any set plans when you don't hear in a real timely fashion that you have scans, but it's been what we have been used to for the last almost 3 years.  Scanxiety has already started, especially saying Dr Gowda feels that after 10 rounds of what Emily is currently on if there is no change, that this is really no longer working to "hopefully" clear her and only keeping her stable.  So we really aren't to sure what will be next for Emily.  I know that Dr Sholler has been pushing DFMO, but compassionate trial of DFMO (if she has disease she would not be eligible for the DFMO trial) would only keep Emily stable, and our hope is to get her clear. The fear of keeping disease always means there could be progression like she had last year. 

So, how is Emily? Emily is doing well and hanging in there.  Every day Emily fights and she is so strong, and continues with a smile on her face.  She just finished her first 9 weeks of 1st grade in school, and she is doing well with school. She has been having a lot of headaches lately, but we are thinking that is from the avastin. She still isn't able to be part of gym with her low platelets, so we have had to keep her out of gym.

Please continue to send your love and thoughts to Emily as she continues to fight this horrible disease.  As to be expected, Dad and I have good and bad days with still dealing with this disease and hearing all the horrible things that continue to happen around us. Some days are really good and other days, you just feel awful.  We will always live in fear, fear of this disease, what it is doing in her body and what is happening.  

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

  

                                    

What A Week

Emily receiving Avastin on Thursday

Its been an extremely hot and muggy week here in VA.  But we are happy to be home.  There is no place like home.

On Thursday Emily continued onto Round 7 of the Avastin/Irinotecan/Temodor.  It was day 1 and she received the Avastin by IV. On day 4, which will be Sunday she will start the two oral Chemos at home. The last round they upped her dose on the one of the orals because of her weight increase. Counts were checked and platelets dropped from 34 over the weekend to 27. Dr Gowda likes Emily to have her platelets at 30 for this trial so she received 3 units of platelets.

While also at the clinic, I talked to Dr Gowda about a few things...just a few things that we have been worried about. MDS (pre-leukemia)... We have been worried about this mainly because there have been a few kids with NB who also were diagnosed with a secondary cancer. We know from the stats that it can happen, but they talk that it normally happens later in life.  There have been a few of these kids that it has happened maybe in only a few years from NB diagnosis. OMG.  So, i asked what he thought Emily's probability of being diagnosed with a secondary cancer were? He said the probability was high. I asked what out of the treatment she had made her probability higher? He said pretty much anything that she has had but that MIBG Radiation Therapy was one of the highest. Of course I remember when she had this treatment we remember them telling us that it could cause a secondary cancer.  I asked why? Dr Gowda said it is from the extremely high dose isotope that radiates though their bone marrow. Not really what I wanted to hear, but it's the reality, its just the reality of what our children may have to deal with. Just like he brought up fertility, that many of the drugs she has taken, she will not be able to have children, and that it can also mess up their premenstrual cycles and such. While many of these children not only have to deal with the cancer itself, the immediate side effects of the chemo, but also the long term effect of the chemo. Some of the long term side effects can happen later in life, all that we are aware of.  It's just the reality of it!

Emily's oral chemotherapys are delivered by mail order through CuraScript. Both of the oral Chemos were supposed to be here today, so I called to find out they had a back order on the temodor. I was very upset that we didn't receive a call to let us know, so they are working on transferring the script from CuraScript to a pharmacy here if they can get all of it that we need.  Just got word that it should be ready tomorrow, just waiting to hear the verification from the pharmacy.

This past week there have been several children that have passed from NB, it breaks our hearts. It not only breaks our hearts, but it really puts the fear in you, and makes you fear what each day could possibly bring.  This week literally has been one of those weeks, we just don't understand why there isn't a cure for these kids.  They deserve it.  They really do.  While we never say it, but we always fear that Emily will not make it to her next birthday. We question ourselves, will she be here next year, will she be here to celebrate? We know that things can change within a day or a month, or 6 months. But it's the reality. While we hope and dream for that miracle of all of her disease one day being gone, I think our fear will always be "worried", "anxiety" of why she has pain somewhere in her body, "fear" and being "scared"!

Please think about these kids, and hug your kids extra tight tonight and make sure you tell them how much you love them.

Alex Mandarino: http://www.carepages.com/carepages/MANDARINO

Abigail Goss: http://www.carepages.com/carepages/FamiliesForever

Talia Castellano: http://www.caringbridge.org/visit/taliacastellano

Will Abernathy: http://www.carepages.com/carepages/WillAbernathyCarePage

Onja Rose Howard: http://www.facebook.com/OnjaRoseHoward

Henley Romine: http://www.caringbridge.org/visit/bravebee

Make sure you hug and kiss your kids and tell them how much you love them. Will keep you updated on how Emily is doing with the chemo this week. 

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

Didn't make Counts, Chemo on Hold...

Snowy drive in (yes I was stopped)

Wednesday Emily had clinic to check her counts and the expectation was to start Round 3 of the IV Avastin and home oral chemo of irenotecan and temador.

630AM, my phone rang to the County Schools saying school was closed because the snowy weather was moving in faster than what expected (when the night before we were not supposed to get anything). I looked outside and it was pouring down raining. Left around 9 once Daddy got home from work and it looked like it had been snowing for a while. It was a long trek into the clinic, but we made it safely.

It was busy in the clinic, so Emily was accessed and we waited back in the waiting room until a room became available. Emily's nurse came out after a while and said Emily doesn't make countys, her platelets are 21 and need to be 35 to start the next round. I certainly wasn't expecting to hear that.

The waiting game, for platelets to recover, makes me nervous. Nervous to wait, nervous that we are letting NB come back in, when this seems to be working.

After talking with the nurse practioner, Dr. Gowda feels confident with this regimen that Emily is on, and that he doesn't want her to move forward without the Avastin. That is great to hear from him... The avastin goes in and attacks the tumor cells that are in Emily's body and then the chemo that comes after attacks the remaining ones. Emily still has such a long way to go, and many tumors in her bones that we want the Avastin and chemo to take care of.

Plan is to wait until Monday, and bring Emily back in and have her counts checked. We are having her eat plenty of greens, and trying anything we can to get her counts back up to where they are supposed to be so that we can start the next round.

While we are nervous about the wait, at the same token it is nice that Emily has a little bit of a break and this weekend we are taking the girls camping and going to meet with Navid who started Projekt 3000. We look forward to meeting with him. Emily is even more excited because her best friend, Lilly from school is coming with her sister who is also friends with Jessie. So, they are all excited and we are excited about seeing them happy. Emily really deserves this and we are thankful to their parents, good friends, who are letting them come along with us.

Please send your love, hugs and thoughts to Danny Nardi's family whom Danny lost his fight to neuroblastoma and AML. Danny and family, we are thinking of your during this unimaginable time. While we never met, I know we have seen Danny's name on the door in Michigan while we have been there! Thinking of you! http://www.caringbridge.org/visit/dannynardi

Please make sure you hug and kiss your kids and tell them how much you love them. The most wonderful thing is hearing your kids telling you that they love you out of no where. Have a good weekend!

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.

Change of Plans

Most things are not always set in stone, and for that you just have to be flexible and go with the flow. Earlier tonight we received a call from our pilot that has flown us the past few times and he wanted to go over flight times. He said the admin had written Wednesday on the papers and he wanted to let me know that he had no way of doing Wednesday because he had prior engagements that he had to do that day. He said that he could do Tuesday afternoon if we were able to leave at that time.  Of course we needed the flight, so we will be leaving tomorrow instead. We have lots of thing that need to get done prior to leaving tomorrow, but I think we will get everything done and be alright to go.

We must admit, our anxiety this go round is much more than we thought it would be due to the upcoming scans.  We really thought we wouldn't be, but we really want to see clean scans much like what we saw here at VCU, and that is why the anxiety is so high.

Tomorrow also starts a new journey, my oldest, my 10 year old almost 11 year old is starting 5th grade.  I can't believe she is starting 5th grade. Jessie, I am sorry I won't be there tomorrow on your first day of 5th grade, but I hope that you have a great day and I look forward to hearing how your first day went. Had we not had this journey that we are on right now, Emily would be starting kindergarden tomorrow.  Its still hard to believe that we are saying kindergarden.  We are still in awe that she is 5 and starting kindergarden. I know she is excited though and she deserves to be excited.

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

Today is day 3 of spreading the awareness... Did you know? Cancer is the leading cause of death by disease in children under the age of 15 in the United States.

Spread the awareness!

Lots of "News"

Its been pretty quiet here since the last update. Emily has had clinic visits twice a week, which has consisted of platelets and blood. She hasn't really complained since earlier this week about her toes bothering her, so hopefully that side effect has gone away. Her weight continues to go up and she is eating great, she is up to 28.1 lbs.

We have lots of "News", meaning a lot of new things coming into our future. Monday we got her registered for Kindergarden.  Wow, did I say kindergarden??  It is so hard to believe that Emily will be starting kindergarden and Jessie will be in 5th grade and Brianna will be starting daycare. Like I said we got her registered and was even so awesome that the day I went to register her, I was able to meet her teacher, Mrs. Tetlow.  Mrs. Tetlow is a 8 year cancer survivor so talking with her about Emily so very much understood what we were going through. Emily is signed up for homebound so that when she is not able to be at school due to treatment, she will have a teacher come to the house or we will work something else out.

Emily and Mrs Tetlow.  She was reading to Emily.

Thursday and Friday they were doing orientations for the kids.  Emily wasn't able to go and Jessie did go and meet her teacher on Friday. Mrs Tetlow was pretty amazing to wait around to meet us on Thursday afternoon after everyone was gone (at 430) to meet with Emily and to be able to meet Doug. Mrs. Tetlow is great with Emily and we feel very comfortable having her.  She will let Emily make the calls and they won't use the clinic because of germs.  She said she did talk to Jessie's 5th grade teacher in the case that Emily does ask for her.  Also while Emily is not in school, we have brought a Monkey to Mrs. Tetlow, called Monkey in My Chair, so the students will know that they have another student and her name and the monkey will go with the class where ever the others students are.  Mrs. Tetlow also met with with the Education Liason from VCU and she is working to make sure she comes and talks to the students about Emily and we will write a letter that will go home to the parents on the same day that will help the parents to talk to the kids with their questions.  So I want to also open this up that if any of the parents have any questions at all, to please let us know. Emily seems to be excited about school, but we know she may not make it the full day and if she doesn't that is ok.

Emily and her Monkey in the Chair

School actually starts Tuesday, and honestly I can't believe that Emily will be starting school soon.  I know I will cry as I can see Doug having some tears about it too, I to have cried every year that Jessie has gone off to the next grade.  I have every year taken Jessie on her first day of school, and this year will be the first year that I won't be able to since Emily has clinic,, which bothers me.  But it isn't like us to not do something another time, a date is just a date. So we will celebrate the next week as the first day as we will with Emily for kindergarden and Brianna for daycare. Brianna starting daycare the same day as well, will be hard on us and this will be the first time she has ever been in a setting like this.  We really want to thank CCDC for all that they have done and that they will be working with Brianna.  We are so thankful that Brianna's teacher will be Mrs. Robin, whom was Emily's first teacher there as well.

Lots of new things to be happening here soon, so it will be a lot to take in and adjust to.

On the medical front, next week we head to Michigan for end of trial re-evalution scans and bone marrow.  We did learn that Wings of Mercy will be able to work with us and get us a flight there by the pilot from the previous times and a different pilot to get us back.  So we are very thankful to have a flight and get that taken care of.and to also have a car while we are there.  We would have drove if we needed to, but there is still possibiities we could be traveling for future treatment, because we are really not sure where we will end up.  We are having the doctors working on seeing about antibodies because that is our goal.

Don't forget it is September, and it is childhood cancer awareness month, lets continue to spread the awareness like we have the rest of year.  We need to make everyone aware.

We wear Gold for Emily

CLEAR

I really couldn't think of any other way to name the title, but to say CLEAR. 
We received an email this morning,

Ms.Hubbel,

Great news!! The MIBG is reported as completely negative (not even a single tumor spot was noted). I need to talk to the radiologist to reconfirm and I will call you back later.

Madhu

Doug received the call,

Mr Hubbel, the MIBG scan is negative, compared to last scans done at CHOP. Doug did ask when we have Emily's scan after Round 6, would they possibily see something that he didn't.  He stated because they have state of the art they may be able to pick up slight/faint disease, but it is clear on ours.

IS THIS REAL? Yes, it is real.  The fear of progression and how Emily has been the last two weeks, have been absolutely scary as hell, but today we celebrate she is "CLEAR"

Dr Gowda said you all need to go out and celebrate this weekend and we agree! Celebrate is what we need to do.

All of the amazing comments, prayers and everything else  you all did, IT WORKED.  IT WORKED.  Thank you, thank you and Thank you!  Seriously thank you!!!

I will update more later about Emily with how she is feeling and the most likely plan moving forward, but I really had to share the news!  (She is not done with treatment, but this is music to our ears!)

The Weekend

I know many of you are looking for an update to see how Emily is feeling, texts, questions, emails and we haven't responded... We really haven't been up for much talking lately, so if you have called and/or we didn't respond to texts or emails, we are sorry!

Well, I wish I could say that there has been change of some kind, but in all honesty there really hasn't been any change.  The major change would be that she is having pain along with two of the spots that she says hurt to walk. We can't figure the pain out, but if you touch them she screams in pain.  We have tried ice, heating pad, frankencense, emla cream, but really nothing seems to help.  The time she seems at most comfort is when she is asleep, as long as you don't touch the spots.

She still has the four spots, and while 2 of them seem to look better, the other 2 actually look worse, bigger and swollen. While we know they are not bug bites, because there are not actual spots to look like they are bug bites, we just don't know. The pain has been horrific at times and enough that we have had to start the Tylenol with Codeine again today from when she had her bone pain last week, but she mostly has been sofa bound or in the bath or shortly in the pool. She said they don't hurt as bad in the water. 

This weekend has been really hard on Doug and I, mostly because of the pain she seems to be in and we don't know how to help her to make it better and really just what is happening.  We have been home all weekend, while most of it has been seeing her in pain, and this is really hard on us.  The pain she seems to be in is really scaring us. At one point, we almost emailed Dr. Gowda, but she doesn't want to to go the ER. On top of the weekend, Thursday we had a pretty bad storm and we lost Comcast so we haven't had any internet, phone or cable.

I did speak with Dr. Sholler on Friday, and she too is concerned about the spots on the skin. She said the bone pain she really thinks most of that is from the Zometa.  She requested that Dr. Gowda get a LDH and HMA/VMA. Which they were done. (Thankfully Friday afternoon Dr Gowda emailed and said that the LDH has come back normal and that the HMA and VMA should be back Monday or Tuesday) She also said please don't cancel the MIBG scan as of yet that you all have there, but I am going to start working on getting one in Michigan.  The concern would be that if this is truly progression, Emily would need to have the MIBG scan there to qualify for another trial there and insurance may not approve two MIBG's so close together. She said that she wasn't real sure about getting Emily in this coming week because she has quite a few kids coming in, but she would see what she could do. She said she has hopes that the spots are only infection, but that she couldn't lie and say she wasn't worried that they are anything else. As of right now, she wants to play it out and see what happens at tomorrows clinic appointment and then go from there. So, its really a possibility that we could be making a trip to Michigan.

As for Doug and I, we have tried to read and read and find information, but we have been unable to find anything much really. What we really found is that with the skin neuroblastoma is only 12% that get it and mostly found in infants.  So we have to look at it that the possibility is 50/50 chance.  Yesterday I think I tried to read and find out about information, that I just had to get away from it, because it was really starting to drive me crazy and the anxiety was building.

I have received a few messages again and instead of replying to all of them, it is easier just to post so that you all know... but most have been asking what would be helpful during this time... gas gift cards in the possibility we have to travel, donations by clicking here...others are asking what is Emily into these days and honestly she has been into her finger nails, painting and her Nintendo DS 3d.

Chemo should have been starting as a possibility of tomorrow if her ANC was ready for the last round of this trial, but Dad and I will not allow her to start with these spots and not knowing what they are. Dr. Gowda also indicated that right now any thoughts of a biopsy is not good because of low platelets.  She is still off the Nifurtimox until we know what is going on and Dr. Sholler is agreeable with this.

Tomorrow is a new day, and the hope is that they are better, almost gone and Emily be moving forward. Please send your thoughts and love.  Also this week I will be trying to work on finding a place to get VA Blood Services out and have a day where people come and donate blood or platelets in honor of Emily (Thank you Mary Ann for getting a number for Emily).  We will update you all as we know more information as to what is going on. 

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

4 Weeks Post MIBG Therapy Round 2

Emily says "Happy early Valentines Day!"

So, I have made a lot of updates via Facebook, so I am going to copy those and paste them here and then update the rest of the information!

February 2nd: Today is day 10 after stem cell infusion and we are still waiting for her platelets to recover! Her ANC and WBC are starting to go up so we know platelets are last and longest to recover so hopefully they start to go up soon. She will be back in clinic to check!

February 5th: Emily has clinic in the morning!! Tomorrow will be 14 days since her stem cell infusion, please send lots of love and thoughts for her platelets to be up and she won't need a transfusion. Dr. Sholler was looking over all of Emily's paperwork this past weekend and we have a call with her tomorrow evening!

February 7th: Yesterday was the first time since we have been home from MIBG therapy that Emily did not need platelets! She was getting them twice a week and yesterday they were at 35! Anything under 20 they transfuse! This is great and we hope they continue to go up! We have clinic Thursday morning to see where things are! I hope to update more tonight! Thank you everyone!!

February 8th: Emily had clinic in the morning and we will see where her counts are! Hoping that no transfusions are needed and just a quick visit!

February 9th: This is our Emily with her platelets at 55 today! Do you know what that means? It means her stem cells worked and it means she will be eligible for other trials to get rid of this horrible beast NB! Woo hoo!

Thankfully Emily's platelets have recovered and we have finally gotten over 55, in order to qualify for any other trials Emily has to have 50.. We finally finally feel a huge sense of relief and that we can breath again because this is what was holding us back to be eligible for anything else.

We did talk with Dr Sholler on Monday evening. Sholler is an amazing woman and what I can tell you all that she has given us "HOPE" That is right, she has given us "HOPE".

So from here, we have one week left at home and then on Sunday, February 18th we head to Philly to stay at the campground that we previously stayed at, where there are some amazing people there! Monday Emily will have her MIBG injection along with talking with Dr. Mattei about her pending surgery on Thursday of removing her broviac/hickman line and having the central line placed and also having her bone marrow biopsy done. Tuesday Emily has her MIBG scan done (scanxiety is already here) and then we meet with Mosse on Wednesday. Right now we are keeping everything open and taking in what trials that CHOP has to offer and also we know what Sholler has to offer us. Sholler has all of our information and insurance information, so should Emily need to go there we will. We have no idea what to expect, because we have no plans, however we can breath easier knowing that her platelets are recovering and we will have options available to us.

We did have her HMA/VMA levels checked, and Dr. Gowda said there is only a small improvement from July, but its better than nothing, but they are still a bit high. These are not valid tests to go by, but it does help to see where things are.

So Emily is doing great right now. She is happy, she is eating, she is going to a school on Fridays that is through the ASK Clinic from 930 to 1230 as long as her ANC stays ok, so we are happy with that.

This is really quick tonight because I really just wanted to update, but I want to watch a movie with the hubby tonight. We have lots of HOPE, this is what matters.

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

Radiation is Done

I have found that writing these posts, get harder and harder.  I sit down to start to write, and my mind wanders and I go to my email and reply to emails, then come back, I go to facebook and read up on the many of the families that we follow, and then come back.  I do this with a lot of things, but I have found this to be moreso now than ever before.  So, I apologize if my posts ever go random, but its the mind of a cancer mommy and just random things come and go.

The weather has turned and it is cold outside. Our family in Massachussetts even has quite a bit of snow on the ground. Since the weather at night has been pretty cold, we have started using the pellet stove again, and every time Doug says pellets, I am always drawn back to the night when this all started and Emily was laying on the floor in the basement complaining her stomach hurt and we were trying to hurry and bring in a ton of pellets from outside off the trailer so that we could take her to the ER.  Why pellets remind me of this...they just do because that night is forever in mind.  Whats even harder to believe is that we are coming real close to a year of when Emily was diagnosed, 12/23.  

So, as of yesterday Radiation is done.  We are all HAPPY to be done with this part of treatment, because it was a lot on us with the constant back and forth, driving back and forth, and her having to be sedated everyday.  Sedated under the "white stuff" propofol for 12 days is a little much.  Many say this is the easiest part of treatment, and while in some aspects I can see why that is said, however on Doug and I it was still very hard. I think a lot of this had to do with Emily coming off of the propofol and the side effects this had on her.  She had the worse temper tantrums coming down off of this medication and was very moody.  

Emily is now done with the "consolidation" part of treatment and will be moving forward to the "Maintenance" part of treatment.  At this point the scanxiety is in high gear and what will come of the scans.  Since a complete workup has to be done before she can start the Maintenance part of treatment which is antibodies. We really want to hear that the Emily is Cancer Free, so please send out all your love, thoughts and prayers that she is clear.

We leave Sunday to head to Philly and right now it is up in the air of where we will stay.  The feeling of the unknown of where we will be staying is really hard, because the Ronald McDonald House can't guarantee anything until the day off.  You have to call them between 10AM and 12PM to see if they have anything available and if they don't have anything available, you can get a hotel, which in the Philly area are EXPENSIVE.  So, right now we are preparing that we will be taking the camper since, staying at a campground is much cheaper a night should the RMD now have anything available on Sunday and looking and calling campgrounds in the local area. We feel lost not knowing what we are doing and where we are staying.  

Monday and Tuesday are very busy days with appointments and scans, and after talking to Dr. Gowda yesterday he indicated that Emily's complete workup (meaning HMA &VMA, creatinine check for kidneys, hearing and ECHO) should also be done there at CHOP so that Emily will not be all over the place and she have a complete workup in one place. So, just waiting to hear from CHOP to see if those can be next week as well while we are there.  We also have a meeting with Dr. Bagatell to talk in depth about antibodies.  She sent me a 17 page document that talks about side effects, and says that she would like for us to write down all the questions that we have so that we can talk about them during that meeting.  She said this meeting will be a long meeting to talk about how antibodies will work and what to expect and what Emily will be getting. So, it is going to be a busy time while we are there.

At this point that is about all I have as far as an update.  Radiation is done and we are very happy with that.  Emily does have clinic on Friday to make sure that she is set with traveling such a far distance on Sunday, but that is where we are. Oh and something Doug and I are looking forward to, we are going to have some Doug and Shannon time together alone, we haven't had this in a very long time, very long time and we are honestly looking forward to this!

Hug your babies and give them lots of love.