Eden Adams

Eden is doing pretty good, we just got back from Washington DC. 

We traveled over for CureSearch Reach the Day to support the Pediatric Cancer Bill that is being voted on!

Here's a couple of pictures and I will add more later.

Sitting in the park next to the Capital Building

Hannah, Duncan, Jessica and Eden

Rainbow out side the Postal Museum

Syringe squirt gun battle on Capital Hill

The Capital

Eden got her long awaited Stake and Potatoes

These bicyslists rode from San Diego for Pediatric Cancer Support

CureSearch Dinner Reception

Eden's CT results show slight improvement and that lesions are still present.  We will continue the antifungals via IV every 12 hours from home.  Her counts are: WBC 2.2, HGB 13, Plts 15 and an ANC of 1166.  Here is a picture of Eden getting a dressing change before she started to cry.  When the dressing is off and is being cleaned it burns.  

Eden is home! She is still doing almost everything at home that was happening in the hospital. 

We did get her off a couple of medications that we could not distribute at home but she still has a lot going on. 

Even though I told her, it was ok to drink the beer.  She declined!  She said, "I'm not drinking that crap" 

Eden is feeling a bit better, Eating and Drinking small bits.

Here is this mornings scan along with the scan from November.

I'll update more later!

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Eden's heart rate is above normal but better.  Everything seems to be only a little bit better.  Her comfort is most important at this point. She is currently resting and that seems to be the pattern.  When she's up, can be very demanding and then she crashes. Her echocardiogram results came back and are much improved.  The gallop in her rhythm seems to be gone and back to normal.  The fentanyol (a patch pain medication) is helping. She still has her PCA pump available for any additional need.

I'm doing fine for those who have been asking.  I can be yelled at by Eden one minute, and then my shoulder is there for her to cry on the next minute… Visitation is not recommended at this point. Due to the infections Eden has contracted, it is not in her best interest to have many people around. 

This is very difficult for everyone, including the nurses.  Everyone is upset by Eden right now, because she is not her usual cute self.  She has multiple issues, so they are calling in many specialists as this is a complicated case.  I really do feel pretty calm considering the circumstances.

Over the last twenty-four hours, Eden has had some problems with confusion and being very sleepy.  Her morphine was reduced to see if this would help. Eden had some low blood pressures, and high heart rate; therefore, an echocardiogram (ultrasound of the heart) was done. She also had had a head CT and chest CT scans.  Her head CT was normal. The chest CT showed what may be fungal pneumonia, so Eden was started on some anti-fungal medications to treat this. Eden’s echocardiogram showed her heart is having some trouble pumping blood as it would normally.  She is receiving medication to help take extra fluid off so her heart won’t have to work so hard.  Due to these issues, Eden was transferred to the PICU and will be monitored closely.  All of her vital signs are stabilizing.

Eden

Eden

Hannah & Eden

Hannah & Eden

Here are some of the wonderful pictures we received from "Flashes of Hope"- we had a great time that day! I especially love the picture of Hannah and Eden. It looks like it belongs on a cancer research poster somewhere...

Eden has had a good week and looks great. 

Her counts are stable and on the up.

Well, at least for a few days anyway!

Eden was hospitalized all last week with fever/pain and a Gram + line infection.  Repeated chest CT on Wednesday improved compared to what was reported.  Her MIBG did have progression with three new bone areas but no new soft tissue disease.  Even with her counts low we are trying to stay as much on schedule as possible. Since she has bone marrow disease we are supporting her through platelets but would like to see her ANC at 500 or greater. Given that, she should start Chemo on Monday the 14th if possible, but can be delayed as much as 2 weeks and still stay on study if deemed not safe to start.  She had a bad cough while she was inpatient and the lung nodules were attributed to infection.  The nodules did not light up on the MIBG.  The MIBG report obviously looks quite a bit worse. The plan is to continue Nifurtimox and topo/cyclo, but this will be determined over the next couple of weeks.