Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Wednesday, April 16, 2014

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

Friday, April 11, 2014

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! 

Tuesday, April 8, 2014

Still Waiting for all Counts to Recover

Emily had clinic yesterday (Monday) with dad. They spent the day there. Her hemoglobin is dropping but not enough to need a transfusion but if it continues to drop she will need one come Friday. Her platelets did drop from 38 to 15 so she received 4 units of platelets after all of her Premeds.  Heard from dr gowda today that he is scheduling stem cell boost for next Wednesday. She will be admitted for the day to the bone marrow floor and get a bag of stem cells. This will take a good four weeks to start working. She will come back Thursday for platelets so she will be good for the long holiday weekend which will also be day 15 of dfmo trial and then come back Monday to check on her counts. Hopefully once we get past this bump of needing transfusions she can have some time away, but still another 5 weeks or so before we can start the time away from the hospital! We will be back in Michigan sometime end of May early june! Emily will also be turning 7 MAy 30th.  

Please continue to send your love and thoughts for Emily!! 

#neuroblastomasucks #emilyhubbeldotcom 
#emilysjourney 

Friday, March 28, 2014

Starting DFMO with Update

We are en route on our way home.  We were in clinic a little longer than expected, so after getting back to the camper and hooking up, we got a late start. We will be making a stop in Ohio tonight soon to rest and then staying in Pittsburgh tomorrow night. It's been hard because we haven't had internet to really update, so I apologize. But I do have to tell you, the camp Host at KOA was a great lady and was wonderful to work with. Thank you Theresa for being a great host. 


Emily had her MIBG scan yesterday and did pretty well. Her head was really hurting from the way she was laying, but she did well. Yesterday we thought she would have to go to clinic after MIBG scan, but she didn't so it was nice to go back and hang out at the camper and nap and enjoy time with kids. 

We had heard from Shannon, the nurse practitioner who was wanting Emily to get GCSF, we couldn't understand why she wanted it.  So we waited to talk with her today about it. We did get preliminary results from yesterday's scans yesterday as well, but didn't have everything back. She asked that Emily be in clinic at 8 before scan to check counts and see how things looked. 


Today She had her PET scan today and as always rocked it. Thankfully her glucose was fine this time and didn't cause a delay like it did in January. Shannon called with her counts and thankfully her platelets looked good from her Wednesday transfusion, hemoglobin is dropping and her ANC on Wednesday was 210 today it was 0!  Shannon said Dr Sholler would really like for Emily to get GCSF/neulasta shot because her bone marrow right now is not making anything, it is less than 5%. She said this is very dangerous and they would feel better that she have it. She did state again, please take Emily in to the hospital if she has a fever over 100.4 since we are driving. PET scan went well and she handled it well. 

We went back to clinic after scan, and talked with Shannon. Scans are stable with some spots brighter/more density.   They feel there is more density because her VMA in January was 8.2 and it has gone up to 11.2. We should have results from PET scan Monday hopefully.  If they are negative like they were before, like we were told before we know there is still cancer in her body based on numbers and scans.  After talking with Shannon, we decided it was best for Emily to get neulasta. Emily's bone marrow is not making any cells and they could see that from the bone marrow biopsy/aspirates. Dr Sholler was notified of this and she too was concerned.  Shannon also explained that when looking to see if they were positive for MDS and NB, they only had less than 5% of her cells to look at them, so depending on how things go she may order another one when she needs to be back in 8 weeks. We are still waiting for the final results of the bone marrow and for the cellularity and the cytogenetics. We wanted to head home and have stem cells given back to her but we need to wait on the final results to know if giving her the cells would even work at this point. If we gave them to her and some things don't look good, it wouldn't work. The final results which we are nervous about, can tell us if she has pre leukemia or anything else going on in the marrow.

Stable is good. We honestly have adjusted to hearing stable because that is what we normally hear, but it's positive when there is no new disease. It's still heartbreaking when you just want to hear those 3 magical words. One day, we continue to believe, one day.  HOPE!  Right now and for a while she doesn't qualify for any therapy because her bone marrow has been hit to hard.  Shannon stated Emily should not have been on the chemo with the way her marrow looked, but who would have known since we didn't have a bone marrow since last year. It's scary to think, but this is why Emily had a neulasta shot before leaving the clinic today. 

We started DFMO in clinic today and Emily is happy to know that she is no longer on chemo for now. Her body/bone marrow needs a rest. Emily showed Shannon she could take 2 pills at the same time. We went over everything again, and when Emily needs to be seen in clinic at home to get labs and physical done. We also have to make sure that if Emily has to go in the hospital for anything that the doctors let Michigan know in real time what is going on because this all has to be reported to the FDA since the drug is provided by the FDA. Right row Emily will still continue to make 2 a week trips to clinic at home until her counts have recovered. It's most likely she will need blood come Tuesday when she has clinic. And again since her ANC is bottomed out, if any fevers we are to head to the closest hospital. Please hope for no fevers.

Please continue to send your thoughts and love that everything comes back with good results. Emily needs a rest from treatment/hospital visits/clinic. She wants to return to school, she wants to do some "normal" things!

Remember to hug and kiss your kids everyday and tell them how much you love them. Things can change quickly. Thank you to all for continuing to be a part of her journey and spreading awareness of childhood cancer. 

Wednesday, March 26, 2014

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/

Michigan

Sorry for the lack of updates but this too will be short...

We arrived in Michigan late last night. It is very cold here, 9 degrees and still lots of snow hanging around! We did being the camper this time because of Emily's lowered counts and being safe. Having her around of community of people isn't safe!

Today clinic, counts, Bone marrow and MIBG injection! Tomorrow Mibg scan and clinic and Friday pet scan and clinic.

Please send your love, thoughts for this to have stayed stable or better. Thank you for your love of Team Emily!

Friday, March 7, 2014

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