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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Saturday, January 4, 2014

Treatment Plans

Emily had clinic yesterday with dad, while mommy had an eye appointment. She was in there for quite a few hours for one because they were so busy and for two because her platelets dropped from 29 on Tuesday to 17 yesterday. So she needed platelets. We have this running joke that everytime daddy takes Emily to clinic she doesn't need platelets and then when I do, she always does. So the running joke was broken yesterday, lol.  Everything else looked ok and she finished her chemo Thursday night. She will complete this trial on day 15 (although it is 28 day trial) next Thursday, January 9th. Michigan said they are working on trying to get scans during the week of the 20th, however we have no confirmation yet because they are working on insurance approvals.  We asked that it be done as quick as possible as we hope to get Wings of Mercy to work with us, but lately they haven't had pilots that can work long distances anymore which has caused us to drive. So we have a feeling we will have to drive, so if anyone wants to help, because they are always asking sending some gas cards, because They are a huge help to us in more ways than you can imagine. 

Dad and I were talking because this round regiment was round 12 of the avastin trial (total of 26 rounds of chemo she has had all together so far) and she is done with this trial after day 15.  We had not gotten a lot of response from Houston, so I was going to make the call Monday morning to get things rolling. Funny story, I checked my email last night and received an email from Houston saying since Emily had already received a few rounds of Ch14.18/IL2 that we needed to make sure she wasn't HAMA positive.  Dr Heczey from Houston who works with Dr Louis called last night and we had a long talk with him about the treatment plan.  It's a different route to treatment, and something that Emily has never had and he thinks it may be beneficial to Emily to try. The downfall, the FDA only allows a new patient on this trial every 3 weeks and to start it every 6. So right now, we need to find out if she is HAMA positive and they will talk with Dr Gowda to make sure she didn't have any allergic reactions to the antibody treatment she did have. Currently there have only been 2 patients on this trial and others standing behind to get in.  He said possibly could be ready in April/May but not to hold his word on that. 

What does this trial require? Emilys platelets need to be 20 so I think she will be ok there and her ANC 500 and we have not seen a low ANC in awhile. Emily would go to Houston when they are ready for her and have a full work up of scans (MIBG, CT and whatever other scans and bone morrow biopsy). She would get the transfusion of the T cells after the results of scans and stay in clinic in Texas that day for most of the day. She will be released but has to stay in Texas 4-6 weeks after the transfusion. There are many side effects much like the antibody treatment, but some different and they know how to treat them. Pain is associated with this treatment, fevers, flu like symptoms, so it could call for inpatient stays at Texas children's.  We were not aware of the 4-6 weeks stay, so we know we will have to work that out how dad and I will take care of that and also work out where Emily will stay. Like dad and I feel she needs to be comfortable being away from home and school, so the camper would be the most likely thing so she can also have her dog.  Obviously once we can accept the trial and know more, we will let you know all, because we are sure some help may be needed either at home or with travel wise.  Right now this is all we know, but feel this is a good really thing for Emily to move forward with so we are working to get this started to we can have dates and know more.  After the 6 weeks, Emily will need to have a work up of scans again like she did before and see how effective the treatment was.

We did ask the doctor last night what he thought we should do in the interim while waiting for this trial. He agreed that high dose chemo hasn't really worked for Emily in the past and that only would need that if she had aggressive progression. (But he did state this was his opinion, but that he could also talk with dr Gowda about it) Progression is obviously what we hope doesn't happen or if this trial doesn't work either. We told him that DR Gowda offered us metronomics trial (which has low dose chemo pills, and some other pills that she would take) to keep her stable and give her bone marrow a break. Dr. Heczey thought that may be a good regimen to do while waiting for the trial in Texas.  However we will see since we have scans in a few weeks ( once again no dates have been told to us yet) and we are also asking for a PET scan while we are in Michigan as well, not sure if Bone Marrow will need to be done yet either, but.

At least we have a plan and we are working toward that plan. We will continue to keep you all updated, this all was talked about last night, and it was nice to talk with the doctor in Texas and he was great, answering all of our questions, talked with me and also talked with Doug. 

Many continue to ask what are some ways to help (while we hate to ask), these are still available:
--making a donation though paypal on Emilys site
--mailing a donation to Dominion Credit Union in Emily Hubbel's name (we just ask that you let us know that you are doing so)
--mailing a donation to Emilys PO Box

By the way we have over 3000 boxes of band aids. And without your help this would have never happened!!! You guys are amazing. We will have a total tally soon of the number of boxes and pictures soon but this was an awesome project and we have another project coming up that we would like your help with, but just need to work something's out. This one will be a little bit easier for many others too help with.

We continue to thank you all for your love, thoughts, prayers and help as we continue to move on with this journey.  We never would be where we are today without all of your love, thoughts and prayers so we thank you so much. 

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

1 comment:

  1. I am glad you have found a treatment plan and I will pray for Emily that all will work in favour of her and she can be on this trial.

    Praying and praying,