Long Day

Today was a long day at hospital...Emily had clinic for accessing her port and checking counts. Her counts came back and they are starting to come back up so it tells us she was fighting something about a week ago.   We should get results tomorrow of urine markers!

In between clinic and injection we met up with another neuroblastoma fighter , Molly and her mom Trisha and Dawn whose son lost his fight with neuroblastoma, superbub! It was great seeing you guys today!! Then we had injection and had lunch with Molly!  Emily also had her hearing test! Hearing test shows no significant change which we are very happy to hear! She is only a few decibels down from where she was last time so if we want to go the route of using an FM system we could do that if she needs more help at school. 

Tomorrow Emily goes back to clinic at 12pm to get accessed again and then she has her MIBG/CT scan at 1pm! We thought we would have to wait till Friday to get results but Dr Sholler will be able to get them so we meet in the clinic around 3pm!! It will probably take longer to get them but we will see!

ScAnxiety is definitely here so please wear your Emily Gear in support of Emily and send your love and thoughts!

Emily Update

Sorry for the delay in updating! Lots of driving!!

Emily did well with scans! Thankfully all of her counts are looking good, platelets did drop but only by 5 points so we are not too worried about it!

We met with Dr Sholler and Nurse Practioner Shannon after the scans and they are happy with how well Emily looks. Her hair is taking longer to grow in but we are thinking it is because of the DFMO! It can cause thinning of hair.  Hearing test have to be done every 6 months so when we go back the next time she will have another hearing test.

Scans are stable. Final impression : increase in amount of avidity/activity at multiple spots including the spots, spine, pelvis and proximal femur. It is especially noted in the left orbit. Mild decrease in right iliac. 

For now we will continue with DFMO and have scans again in 3 months. We will watch her HMA/VMA urine at home but right now they are the lowest they have ever been. Although when she progressed in December a year ago her numbers were not up. 

Dr Sholler did go over another trial with us that is DFMO with velcade. It just opened a week ago so we may think about doing it later but for now we feel this is best to keep her on just DFMO! She too was ok with us continuing on just DFMO being that she doesn't have any new spots. 

Emily is doing great though so we are happy with where she is right now. We will continue weekly visits to clinic to check counts and hopefully once they feel they are stable enough we will move to every two weeks but for now once a week. 

We are now spending time with family for the Holiday , have cake for early birthday for Emily!!  Emily will be 7 May 30 and she is excited Icing Smiles will be making her a dream Frozen Cake. 

Sorry again for the delay.

Stem Cell Boost

Today was a long day in the bone marrow unit but she did have a great set of nurses taking care of her. We stopped by clinic prior to bone marrow to get accessed since she was nervous about getting accessed by someone else!

The day went pretty well, she had counts down and everything is dropping. Platelets and hemoglobin dropping so she will definitely be going back tomorrow to get platelets and possibly red blood depending on how she is feeling or if drops anymore. Over the stem cell infusion went great, no problems or issues. Blood pressure remained on the lower side with heart rate being up. We are not sure why the heart rate is up but dr gowda said we could check her heart next week by doing a scan of some sort if it is still up. She had 4 hours of fluids after the stem cells.

Tonight she is doing well, she seems tired after a long day and agitated but we are home and for that she is happy!

Thank you for continuing to keep Emily in your thoughts!

#emilyhubbeldotcom

#emilysjourney

Fevers

Today marks 4 days that Emily has had fevers off and on during the day and night. The only symptom she has is a fever. Everything she was tested for earlier this week has come back negative so we have been giving Tylenol at home. We also haven't given her blood pressure medicines too her the past 4 days because her blood pressure has been a little on the lower side with high heart rates! 

Dad took Emily to clinic this morning and upon arriving she has a fever of 101.3 with high heart rate. I came in mid day so that dad could go home to sleep since he has to work tonight. They did blood cultures again and are checking to see if she has the flu. We should hear from the doctor on call sometime tonight if the flu test is positive! If it is they will call in tamiflu. If it is not, if she has another fever we have to call the on call and let them know. Obviously we worry about fevers for four days because it reminds us of when she was diagnosed bc she had unexplained fevers! 

Her red blood is slowly dropping currently at 8. So we have to watch her to see if she is tired to take her in for blood. Her platelets did drop from 63 Wednesday to 32 today, so she needed a transfusion so she would make it through the weekend. We figured she would need them since fevers eat up platelets!

Right now she doesn't have to return until Wednesday unless another fever or needs a blood transfusion! Wednesday she will be admitted Into the bone marrow transplant floor and prepped for her stem cell boost.  The plan is just to be there all day unless something happens. She will then have to return Thursday morning depending on what her counts are Wednesday. 

It's been really busy at the hospital lately and we really need a break. Heck it would be nice to have a vacation away from it all. But.  

The neulasta (14 days today) worked very well for her WBC and ANC because that is up. It's possible to stay in her system for another week and we could possibly see a drop off but we know it's still around right now. Since her ANC is up they are not keeping her inpatient unless sometime else happens! Since today was 14 days on DFMO, VCU was sending over her information from today to Helen DeVos for day 15! According to the trial she will need a day 28 labs as well. 

Please continue to keep Emily in your thoughts. We are hopeful it's not the flu but at the same time we don't know what else is causing the fevers!

Thank you for continuing to follow Emily and her journey! 

Neutropenic Here in Michigan

We are all exhausted ... Late night last night to early wake up to be at clinic this morning early equals not a lot of sleep!

Emily stresses a lot when she has to get accessed here in Michigan because a couple of times they accessed her a couple of times with no blood draw! But this morning it went ok ... We figured she would need platelets since she had quite a bit of bruising on her legs, arms and head. As figured her platelets were 18 even after getting 3 units of platelets on Friday back home. Bad news her ANC is 0 again. Neutropenic in Michigan is not where we wanted to be... EspeciAlly if she gets a fever, we head inpatient here which is not where we want to be.  So we are staying away from people and hoping to keep her fever free! Dad and I are happy we brought the camper because she doesn't have to be trapped in the renuncci hospitality room (most likely without kitchen) and can move around our camper and also go outside and not be around a lot of people! 

Today was a long day... We didn't think we would see Dr Sholler this visit because we knew she had a conference of some sort this week. So this morning when she walked in, we were surprised. She was leaving within the hour to catch a flight to south cArolina to talk about dfmo! After catching her up and what information she had, she wanted an additional testing done for MDS from her bone marrow aspirate and biopsys that she had this morning. We talked about the DFMO trial because this is where dad and I feel would be best for Emily right now. Emily's bone marrow needs a break from chemo, she wants her hair to grow back and she needs rest from the hospital. The 2-3 visits a week along with Inpatient stays right now isn't where we want to be. Emily has been battling neuroblastoma for over 3 years with lots of chemo, it's time to give her a rest. Don't get us wrong we are nervous about this change to compassionate trial of DFMO worrying over her progressing again or bone marrow not start getting better but dad and I agree it's time to see how she does. Dr Sholler agreed she felt this was a good move. 

So papers were signed for compassionate use DFMO trial today, hearing test done and now we move forwArd to scans tomorrow with MIBG and Friday PET scan.

As for hearing test results showed she has lost high frequency hearing and it is more severe in her left ear.  They didn't feel that hearing aids were needed at this time but said that she may need a personal FM system to help at school. We noticed it yesterday in the truck with a lot of background sound and Brianna talking , trying to talk with her she could not hear. 

At this point bone marrow needs to be negative to start dFMO trial.  The compassionate use means she is on a trial but it is not as strict as the one for NED! She did well with the bone marrow today, and had a little pain after but handled it well. She also did well with all pre meds for platelets and platelets well. She hAd some coughing from the platelets but we have noticed that quite a bit lately!

While we have been here blood pressure has been looking pretty good. It did go very low during bone marrow but was explained pressures normally go down with sedation and hers are a little more lower bc of her meds that she is taking but nothing they were concerned about!

Tomorrow is MIbG scan so hopefully she does well tomorrow and please continue to hope for stable or better. Wear your Emily gear tomorrow or Friday (and if you don't have gear, wear purple and pink to show your support of Emily! 

Thank you again for loving our girl and supporting us! It means so much to our family!! Please hug and kiss your kids and tell them how much you love them!

If you are interested in helping with a fundraiser for Emily, check it out here: http://loveofcharms.origamiowl.com/parties/emilyhubbelsfundraiser231675/collections.ashx

There is also a Facebook Page you can check out for the fundraiser and a place to ask questions : https://www.facebook.com/events/276371519190331/

Update for the Week

We have had another busy week, but thankfully no inpatient stays for this week.

Tuesday, March 4th Update:

Emily had clinic this afternoon, and first time in a long time she didn't need any blood product transfusions. Everything is still low but not low enough to require anything. She is still neutropenic but hopefully by Friday when she has clinic again, she will be no longer be neutropenic. When she got there today her blood pressure was really high today. They gave her Hydralazine and checked her blood pressure every 15 minutes for hour and half and talked to nephrologist who requested that we up her dosage if enalapril. She has been getting headaches a lot which could be from how high blood pressures.  Next week they want us to meet with the nephrologist but they think she has chronic kidney disease from long term chemo that we will probably have to deal with long term or it could be short term. Insurance doesn't cover the blood pressure machine for home so they told us signs that we need to look for.  Other than that Emily seemed to be feeling so much better today and she is eating well.

Friday, March 7th Update:

Emily had clinic today and it was an all day visit today. Emily is still having high blood pressure! Thank you to some wonderful people who sent Emily a blood pressure machine to be able to see what her blood pressure is. They know who they are and we thank you so much! All of her counts are starting to come back up slowly except her platelets took a big drop from Tuesday. We did learn that she was positive for ParvoVirus PCR (but that was taken over a week and a half ago now) which helped in her counts dropping to zero along with the chemo. We have no idea how she would get this but Dr Gowda says it's in the air and because she is immunosuppressed she could easily get it! So along with the chemo, her counts dropped a lot.  He said they would normally give IVIG for that, which we did and antibiotics, which we did. I was worried wondering how do we know she is not still fighting it and he said that her counts are coming up, so we know she is past it. He said if her sister were to have it, they don't normally treat it, you have to let it pass.  Today her ANC was 1100 so we are finally out of the danger Neutrapenic zone and only In the precautions of being careful.  With that we are going to start her back on her two chemos. Dr Gowda did not want her to go on the thalidomide and Celebrex since it is supposed to drop your counts a lot and we didn't want to go back on full dose of the two she was on, so we are back to etoposide and cyclophosphamide! However instead of taking both of them everyday she will take 1 of them every other day.  We are currently working with Dr Sholler to get Emily in soon for scans, bone marrow to get her on compassionate use of DFMO. We really need to get Emily's bone marrow and platelets back up so that she can do other trials and platelets not be an issue. Julie, Dr Sholler's nurse, said she is working on it, so hopefully in a couple of weeks we will be on our way. As long as Emily has no progression she will be able to go on the DFMO for a while! We are looking Into a trial that is Dr Lucas' trial so we are waiting to hear back! This trial we are hopeful we could do is in Boston at Dana Farber, but again have to wait to hear back.

Today she did need to get platelets since they dropped so much. He again gave her 4 units since the one from this past Sunday lasted until today.  She continues to get Tylenol, Benadryl, Pepcid and solumedrol which have been helping in not having any reactions like she had before along with the platelets going slower.   Thank goodness!

Like I said before her blood pressure still remains an issue. Dr Bunchman who works with Dr Lo came to see us and he explained that he thinks this is a side effect that Emily will deal with for the rest of her life from chemo, radiation, MIBG radiation and more

Chemo. He called it Microangiopathy disease which is small blood vessels from treatment.  So he changed her medicine to lisinopril and upped the dosage a bit to help with her blood pressure. So starting tomorrow (since she had received her morning dose this morning) she will start the pill which should should last for 24 hours where the liquid was much faster acting and not staying in her system as long. Tonight she will just get her other dose and no longer take the enalapril!

We are hopefully her counts will continue to go up and she doesn't have to deal with the chemo side effects from doing them every other day. We are also hopeful to get her to Michigan soon so that we can get her on the DFMO and see her hair growing back and not seeing the nasty side effects she had! 

Please continue to keep Emily in your thoughts and love. And remember to hug and kiss your kids every night and tell them you love them!

 #neuroblastomasucks #emilyupdate #emilysjourney #emilyhubbeldotcom

Very Long Day at Hotel VCU

Overnight Emily continued to have high blood pressures but thankfully no fevers. Blood draws at 5 in the morning tend to be rough as well because her port has been very positional so drawing blood has been tough! So the past two nights she has had to come back and draw again each time waking Emily and trying to get her to move around to get the blood draw!

Platelets didn't go up much today either 23 only to 26! She was given 2 units yesterday so they decided to give her a full 4 units today. Her body since that anaphylactic reaction has been eating up the platelets. WBC .4 so she is starting to go up, just really taking a while. They did say the CMV virus they were checking for came back negative but the other one has not come back yet!

Today has been a rough day. Actually it's been a rough week, we all just need a vacation away from work and everything, ugh something would be nice. 

This morning her blood pressure was really high before Dr Gowda visited and were all over night. With blood pressures still being an issue, dr gowda said he is not ready to let her go home yet! So they worried that with high blood pressure that her kidneys were having some problems especially since her creatinine levels have remained elevated but not crucially high. Etoposide can cause kidney issues as well as years of chemo (like she has had), so they contacted Dr Lo a Nephrologist! However Dr Gowda feels the high blood pressure is the overload of all the fluids, But they also don't want to rule anything out! So they got a Nephrologist to be a part of Emily's team and to see what's going on. She ordered an ultra sound of the kidney and some extra labs overnight to check somethings. Blood pressure remained high and so they gave her IV hydralazine and checked it in 15 minutes and her blood pressure was still high and then gave her isradipine (pill) and after awhile it was still high so another dose a little bit higher of hydralazine. After half hour it was checked again and now she had extremely low blood pressure and very high heart rate and extremely lethargic. Then time for a bolus to bring the blood pressure back up! By this time Emily had moments of ups and then extreme downs and when she finally came down off the medicine she seemed to be feeling like a "glucose low".  During all this they were able to give her platelets but watched her closely (we were upon the 4 hours and we really didn't want to lose platelets that a donor took time to donate) and even the ultra sound was being done around this same time. Emily has been very agitated throughout all this not talking much and feeling very annoyed. During this time we also had bloody lose stools. So all of this adding up made for a very nervous mom watching all this and seeing her moods up and down. Thankfully this morning she felt up to hanging out for 2 hours in the playroom with Sue, myself and Brianna! See picture....

Dad slept today after not sleeping all day yesterday and of course night from working, I hated that when he called after waking up to give him the update of the day.  Never fun to wake up and hear the news that Emily has had a rough day and all that has been happening. Then being frustrated with the doctor on too much medicines so going from one extreme to the other, was hard! Thank you to Sue for bringing Brianna up for the day and getting breakfast and lunch. Poor Brianna hasn't had anything stable with Emily being in the hospital and having a hard time with dad going to work, and where she will be for the night! She was really good today and nice to have her here hanging with us. Tonight Nanny also came for a visit and then daddy got here with toys for both of the girls. Thank you nanny for taking Bri for the night and thank you sue and Jojo for holding down the fort. I feel so bad that we couldn't have any down time to visit and see Jojo and wish we could just take some time off and go spend time with them. 

Emily hasn't seem to have had anymore loose bloody (and they were not just tinged but all red and obviously blood) so we are thinking she had some kind of gi thing going on or tear that couldn't clot because her platelets were so low and then has not had anymore since she received platelets! I know we were concerned with hemoglobin dropping again but they did a stat hemoglobin check and it was from 10 to 9.

For the past 24 hours Emily is starting to eat better, so thank you dad for making sure she had her Mac and cheese because she has been eating that and chicken noodle soup like crazy!

Tonight about 1110pm we finally got the IVIG going. The hope is that whatever antibody or whatever that is eating up the platelets the IVIG will help it. The biggest concern with IVIG is blood pressure so it Is being checked what seems like every 15 minutes. They bump it if she can tolerate it but they are only bumping it at halves to not overwhelm her body! At first her blood pressure went up in first 15 minutes but has gone down within next half hour! So so far she is tolerating and for that I am happy! 

Emily is very agitated with people, doctors, noises and just anything out of the normal. I feel so bad, dad and I both do because of how she is feeling! Everything she is going rough and putting her through more hell when this was supposed to be less!

The plan is to get this done with no high or low blood pressure because if goes " low we may have to either do fluids and if it goes high will have to do meds.  It will probably be about 10-15 hours to complete so I am not sure when the blood draw will be completed to check counts and everything else and we are not sure on discharge. I know that Dr Low is to come back in the morning and review Emily and see what is going on. She will determine if she will need to go home on blood pressure meds tomorrow and review kidney ultra sounds. But for us, We just want to make sure she is safe when she heads home and not worry about blood pressures and anything else. If discharge tomorrow, we will have clinic on Monday morning to get blood counts and check in with Nephrologist!

Please continue to keep Emily in your thoughts and love. We are all completely exhausted and want to be home. I'm so tired tonight and won't be sleeping much to keep an eye on her. 

#emilyhubbeldotcom

#emilysjourney

#emilyupdate 

#beuroblastoma 

Still at Hotel VCU

Yesterday she spiked another fever around 730 last night and due to another high fever they added in another antibiotic daptomicin. The last temperature she had was last night at 1230am and today she has stayed in the 99 area! Counts were checked overnight and as expected everything dropped needing blood and platelets sometime today. WBC came to .3 but still no ANC, so still neutrapenic!  

Today Emily had a rough day. She woke up swollen this morning and slept in until almost 11, so we knew here hemoglobin was low.  She had a slow start to the day. Today she scratched her nose and it started a nose bleed when she was in the playroom which resulted in her throwing up a lot of blood again! So she was extremely lethargic for a while until the blood was half done! Thankfully no reaction to either platelets or blood. However right now we are dealing with a pretty high blood pressure. She is supposed to get IVIG sometime overnight but will not be able to get that until her blood pressure has come down. The nurse lowered her fluids and explained if after awhile they haven't come down they may have to add in something else to get them to come down. 

Tonight two of our friends from divas and dudes came out and cut all the knotted hair that was falling out of Emily's hair at the hospital. Emily was really tired during this time, but she handled it well sitting in mommys lap. We thank you guys for coming to help her out tonight and make her feel better about her hair! She was having a hard time with it so hopefully she will feel better now. Back to some fun hats for a while, but divas and dudes has also offered to fix up Emily's wig that she has so she will feel better and we thank you guys for helping us with that. You guys have been a part of Emily's journey since the beginning when we came in to get her hair fixed and we couldn't thank you guys enough. 

Thank you to dad for making sure that we are taken care of and running all over town the past couple of days having to get things together at home since we were not prepared with anything for inpatient while and also having to work. We appreciate you making sure we have what we need while we are here and bringing food and clothes to us here and then tonight bringing Emily a special treat! Dad sat with Emily for a while tonight working on a Barbie Lego set for Emily and Emily loved it.

Thank you to My mom for helping out with Brianna today during the day and thank you for Sue and Jojo for driving from PA today to come see us for helping out with Brianna tonight overnight and bringing chili for dinner.

We still don't know when she will be discharged right now. Earlier today I would have thought probably not till Sunday but we are not sure. The plan for tonight is to hopefully get her IVIG going depending on her blood pressure and check counts overnight!  But those things can always change.

Please continue to keep Emily in your thoughts. She is handling this stay ok, but a lot of the stay had been sleeping and not feeling well. Tonight she is starting to feel better and we love that she is feeling better.  It's been over a week now she has been neutropenic. We still wait for results on the labs for the viruses they are checking on but hopefully they are negative. Lastly we also found out today the Homebound has been completed and we will get her started next week working with her.  Emily will be ready when her counts are up to visit with some of her friends from school because she misses them!

#neuroblastomasucks

#emilyhubbeldotcom

#emilysjourney

#emilyupdate

Home Sweet Home with Update

(Update a little more info than Facebook)

After a few days in the hospital we are home! 

After platelets she had a small reaction where her blood pressure went up and her face started to turn red but after about 10 minutes it was under control! 

After platelet transfusion her platelets went up half and her hemoglobin had dropped a little bit. She has clinic on Thursday to check counts and see how she is doing! She will most likely need red blood and platelets but we will see. They also drew some additional lab work so we should have those results back on Thursday except for the antibody one that takes a little longer! 

She is still neutrapenic so she could still get another fever and have to go back. So hopefully she is on the up and up! But she appears to be feeling better so for that we are happy! 

She is still on many medicines and round the click Zofran but she is starting to eat a little more which is good!

Depending on how her hair does we may need to go and get it cut! We are seeing it mat a little bit in the back and trying it get the mat out from the hair loss will only make it worse. We just have to be careful with being neutrapenic!

(Photo from home today , she is happy to be home with her Barbie House)

#emilyhubbeldotcom 

#emilysjourney 

#neuroblastomasucks 

#emilyupdate 

Neutrapenic

That's the word.

Today we had clinic to check counts and see how things are. Yesterday she really didn't eat much and we started the megace last night. As of last night she seemed to be real tired and laying around! Thankfully she hasn't had any nosebleeds and no throwing up blood but we have been on top of the medicines and nosesprays to help! It still doesn't mean they are ruling out blood in her intestines and GI! We did have to get a good humidifier for her when she sleeps and that is helping for when she wakes up!

Her blood pressure was up and heart rate was up a little bit, but when we got there she had a temp of 99.5 probably 30 minutes to hour later it was 100.2 (remember 100.4 automatic inpatient). Counts came back and the word was neutrapenic. The first word that came out of my mouth sh$&, ugh! Her ANC was too low to even register! Platelets took a dip again and hemoglobin was 7.8!

So dr gowda wanted to give her platelets since they took such a dip. She didn't have a bad reaction today but of course Benadryl, Pepcid, Tylenol and steroid! Tylenol brought temp down to normal! 

After platelets he wanted blood cultures done since the temp she had and give her a dose of IV meropenem. But if any temp we had back. So with that said, no visitors that have been sick or been around people that are sick and lots of hand washing! Right now we will probably keep it to no visitors so we can stay away from hospital! And no father/daughter dance! But since she hasn't been at school it's not really a topic on her mind! 

Because hemoglobin dropped he wants to see how she does overnight if the tiredness is worse to bring her in the morning so she can get a blood transfusion if not come Monday and she will get it then. Endoscopy has been put on hold because her counts are too low and puts her at risk for severe infections!  But clinic Monday! 

It's been a long week and neutropenic was the last thing we thought we would have to deal with! But we are it's here! We thought these medications were going to give her a break but her body is not like everyone else that has been on this trial and it's taking a toll on her. So etoposide has been stopped and cyclophosphamide she will only take half until her counts come back up! 

Please continue to send your thoughts that no fevers and no more blood issues! We have to wait on checking GI until counts back up!

Thank you for continuing to keep up and checking in! 

#neuroblastomasucks

#emilyhubbeldotcom

#emilysjourney

#emilyupdate

Chemo/Chili's - Day 4 of Round 9

September 23rd -- today at Chili's Restaurant 100% of all net profits go to St Jude's for the children and Childhood Cancer Research. All you have to do is go in and eat or order out.  We don't normally eat out, but tonight we decided to eat out for the kids and for Emily.  #morehope

Today also is Day 4 of Round 9, which means its time to start the chemo. Hopefully this chemo remains easy on her stomach and she does well and can handle school ok. We will do the chemo at night since there really is no other time that she can do it since she is in school and then having 3 hours of no eating. She did really well with this when we did it during Round 8, so I'm sure she will handle it well this time. Because her weight went up, Dr Gowda increased her irenotecan a little bit also.  We are hopeful for another easy round of chemo.

Daddy went and had lunch again with Emily today since he was is working late. Emily enjoys having daddy come for lunch just as much as daddy enjoys going.

Busy times coming ahead with celebrating Emily's younger sisters birthday Thursday, she will be 4. Older sister has a dance on Friday night and then 2 birthdays next week, daddy's birthday on October 2nd and older sister Jessie's birthday on October 3 (she will be 12)!

Just a quick update with how things are going. We will continue to keep you up to date.

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

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A few things going on right now, a couple of fundraisers:

**https://www.facebook.com/events/609834575703838/

September is Childhood Cancer Awareness Month. 

Part of Origami Owl's Mission statement is to "Be a Force For Good" so Tammie Darko has chosen to donate 15% of all sales made through this fundraising party for the month of September to Emily's Journey to fight Neuroblastoma. 

https://www.facebook.com/emilysjourney

Please take a moment to read about Emily Hubbel's Journey. 

She will also be donating "Warrior, Fearless and Hope" Tags" to Emily's family.

Go to www.tdarko.origamiowl.com to order your locket or special tags, etc...early Christmas shopping to support this great cause. Choose party id 210154 Emily's Fundraiser at checkout. You can also place an order directly with me by emailing it to LoveTheLockets@live.com

Thank you for your support in advance.

**http://www.scarletscarves.us/#!childhood-cancer-awareness-month/c15ec

September is Childhood Cancer Awareness Month.

Our goal here at Scarlet Scarves is to help raise awareness of Childhood Cancer and to raise funds for cancer research. Please take the time to read about each of these amazing children. Together we can find a cure. By making a purchase goes to the family

Clinic - Day 1 Round 9

Emily had clinic today for us to talk with Dr Gowda to go over results and where things stand as of today and how we are moving forward.

Final results show uptake in left base of skull, right sphenoid, left orbit and multifocal aras in the vertebrae includind T8 and T11 through L1 and L4. There is stable uptake in both iliac bones and proximal femurs. So in comparison to the previous scan, they are stable with no new areas of activity.  The final bone marrow results did give Dr Gowda some answers on how Emily's bone marrow is working and able to produce the red cell, platelets and white blood cells. There is marked thrombocytopenia (low platelets) which we know. The bone marrow also provided us some answers with why Emily's platelets are having a harder time to come up when on treatment. The right side of her marrow shows 70% cellular make up of red cell! platelets and white blood cells. Dr Gowda said children on chemo they expect to see 70-80%. Emily's left side shows 50% cellular make up. These answers some questions on the platelets. Because of this though Dr Gowda wants her platelets to always be above 30, so this could mean that she has more platelet transfusions while on the chemo regiment.

Dr Gowda agreed with moving forward and doing two more rounds of the Avastin/irenotecan/temodar trial. Thankfully today her platelets were 41 and she didn't require platelets and she was good to start. So today started day 1 of round 9!!! Wow round 9!!! Scary, but Emily has had a lot of chemo under her belt, but she is doing great. Dr Gowda doesn't feel it's a time to not do anything, and honestly I'm not there either being that she just progressed in December. But as parents it so hard to keep it going, knowing so much more now that what we knew before. But stopping could also mean giving the neuroblastoma time to come back. So we move forward, two more rounds them back to Michigan for scans. Hopefully the next visit is nothing like this one was. 

Dr Gowda still wants Emily to get a bag of her stem cells sometime in the future, but he is ok right now with holding off on them. 

Today while getting her avastin, Emily started doing some of the work that was sent home from school for make up for missing today.  So proud of this girl, she just keeps rocking.  Dad and I love watching her learn, and she is doing so well at school. Daddy went and had lunch with her again yesterday and she enjoys that.  She also is really starting to get used to the Benadryl and doesn't sleep as long as she used to with it. But today put a interesting day with the fire alarm going off at the hospital and everyone having to go out. Interesting. Thankfully Emily was done and Elaine was able to get heperineze her line and when we got home, I went ahead and deaccessed her. 

Remember to hug and kiss your kids and tell them you love them. Have a good weekend. 

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. 

Michigan Week

It's that time again...but first I must apologize for the lack of updates on Emily. I also want to apologize upfront for typos, traveling and iPad, easy for that to happen. This will be a short update, but a quick update of where we are.

Emily finished round 4 of the Avastin Trial last week. This round came with quite a few unexplained off and on fevers, unexplained bouts of throwing up, low glucose with high WBC and ANC, then dropping low and needing platelets to almost needing blood. She finished off the round though, and now we are here...

It's been a long two days of traveling and later tonight we will have made our destination. It will be another late night!!!! Tomorrow Emily has clinic with port accessing and count checks and then her MIBG injection. Thursday she has her MIBG/CT scan and then afterwards we meet with Dr. Sholler for results. Needless to say, dad and I are feeling "scanxiety". Obviously we are hoping to come out from scans with less disease or even stable.

I am going to end this, but I want to say thank you to everyone who continues to follow us in this journey, pray for our family and most of all Emily. Thank you for your love, donations and support. Your emails, messages, words are each read and much appreciated. If you have your "Team Emily" gear, we ask that you wear them either tomorrow of Thursday and share your pictures by tagging us on Facebook.