Help Little Phoebe Please!!

$5,625 of $50k goal

Raised by 77 people in 36 months
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Our friend's, (Dan & Adrienne Green) 3 year old daughter, Phoebe, has been diagnosed with a rare and life-threatening genetic blood disorder.  Autoimmune Lymphoproliferative Syndrome (ALPS) is an inherited disorder of the immune system.  In ALPS, unusually high numbers of white blood cells called lymphocytes accumulate in the lymph nodes, liver, and spleen, which leads to gross enlargement of these organs. ALPS can cause numerous autoimmune problems such as anemia (low count of red blood cells), thrombocytopenia (low count of platelets), and neutropenia (low count of neutrophils, the most common type of white blood cell in humans). Her medical bills are skyrocketing, and it's just the beginning. Her parents will need to travel the United States for specialists at their own expense.  Because ALPS is so rare, even though it is life threatening, none of the costs are covered by insurance.  Please share this page and forward it to whomever you can. Together, voice by voice, Phoebe's roar is getting louder!
Here is her Medical History Blog:

roarwithphoebe.weebly.com

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Update 91
Posted by Maria Murphy
1 month ago
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Phoebe was finally able to return to school last Wednesday. She was home from school for just under one month. Having the three viruses she did (RSV, coronavirus and human rhinovirus/enterovirus) really took their toll on her. Especially when she developed pneumonia on top of them.

When this week started she was only experiencing her "normal". But her normal takes it's toll on her, even without the added strain of an infection. Phoebe's normal includes swelling, fevers, fatigue, shortness of breath, muscle weakness, aches and pains...among other things. But sending her to back to school after coming off of being how sick she was, we were expecting her to be more tired and experience more flare ups.

And we were right. Come Thursday afternoon, Phoebe was completely exhausted and her flare up was in full swing. Even though she is on an abbreviated schedule regularly at school (three and half hours of school a day), and she had only been back for two days, her body was worn out, swollen and sore.

But true to the fighter she is, Phoebe insisted on going in to school today. She has missed her class, her teacher, and being able to go to school like her sisters that she wasn't going to let anything stop her. She did come home today and curl up in her pajama's underneath "white", her blanket she clings to when she isn't feel well.

Thankfully over the weekend, she had a couple of days to rest and recover from her few days back at school. Hopefully her symptoms remain as her flare ups, and don't progress into anything more.
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Update 90
Posted by Maria Murphy
5 months ago
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9-7-2016: Yesterday was a very exciting day for Phoebe! Not only did she start Kindergarten but as she was laying down getting ready to fall asleep she lost her 1st tooth!!!

She has been wiggling that tooth for weeks now, getting anxious for it to come out and have her first visit from the tooth fairy. She is so excited that the tooth fairy will finally come tonight for her! So many big milestones for her on the same day!

It feels good to post the good and happy events in Phoebe's life...not just the tough and sad ones!!
Let this be a lesson to all of us to cling tightly to all moments precious and priceless.

Best of luck Phoebe as you embark on this new school year. With love, The Murphys



Update from Adrienne:
I know I haven't posted any updates about Phoebe's health since the beginning of the month. Part of the reason has been we have been in a stand still waiting for results before determining next steps, and I want to update you all as best as I can each time. But we have a very busy week of appointments this week, so here it goes...

Phoebe continues to still lose weight despite eating as much as she is. We took her in for a weight checks each week since the beginning of the month, and each time she steps on the scale she shows at least a 1 lb weight loss. To date, she has lost a total of 5 lbs. Because of this continuous loss the doctors drew blood to run a bunch of labs.

Her labs....as confusing as ever. She has some levels that are high and some that are very high. She also has some levels that have been low her entire life but are now in range. Collectively her team of doctors don't know what to make of these values and changes. What they all can agree on is that if you were to look at individual levels they point to specific diseases. But combining these levels to be read as a whole, she remains a medical mystery. This could be her immune disorder, or it could be something else. But with these individual lab results coupled with the weight loss, this cannot be ignored. So they want us to go back to the doctors office where this all began 4 years ago...The Valerie Fund.

We go to the Valerie Fund on Thursday, to see Dr Halpern. It's been a little more than a year since we have seen him in person. That seems to be the never ending pattern. We never go longer than this before something pops up sending us back to him. It was slightly comforting but equally heart breaking to hear "How is Phoebe?! We miss her but I was hoping we wouldn't hear from you to make an appointment" when I called to schedule her visit. Over the four years with the Valerie Fund we have grown close with the staff, as I am sure each parent who brings their child there does. It was a collective unspoken heartbreak that we were there again, no closer to answers, but being fully aware of her history and the great risks it carries.

On Friday, we go to Phoebe's pulmonologist. We scheduled this appointment in September for two purposes. 1) We had changed her inhalers in September, and they wanted to give her 3 months to see if there was any improvement in her symptoms. 2) We were to have a repeat CT and compare it to the images from the NIH to check the size of the tracheal node and see if the atelectasis improved, worsened or has remained the same. The CT was to take place on Sunday morning. Key word...was.

Since the original CT was done at the NIH, insurance was not involved. The NIH is government funded and they do not go through insurance at all. When we first saw her pulmonologist here in NJ he ordered an X-ray to see if we could see what the CT showed, hoping that would eliminate her needing the repeat CT (less exposure with an X-ray than a CT, and they didn't want to do another CT if we could see it on an X-ray). Well, this bit us. Because the X-ray was done through insurance, and true to Phoebe didn't show us anything, we got the call Friday morning that insurance was denying the CT.

Insurance feels the CT is unnecessary since there were no findings on the X-ray. The office tried to quickly calm me by telling me the doctor was appealing this decision and immediately requesting a peer to peer, it will just take time to hopefully have it approved. We are keeping our appointment on Friday to regroup regarding her inhalers and have a face to face discussion about the next step in appealing insurances denial.

So there I was, Black Friday shopping, crying about insurances decision. Heart broken that the inhalers have not substantially helped, knowing all this time at least part of her lung shows collapse, knowing she is fighting a cold and developing a bad cough because of it. Insurance can look at her entire medical record (we have had the same company since she became ill) and still deny necessities.

But as I was falling apart, something caught my attention. The song playing at the store I was in. ..."Fight Song". It was the reminder that I needed at that exact moment in time. We have fought every step of the way for the past four years. Though we don't want to be, we are used to this fight.
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Update 89
Posted by Maria Murphy
5 months ago
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Phoebe Update from her Mom:
Phoebe had her 6 year check up in the middle of October. These visits usually begin with a weight check, height check, vitals, hearing and vision checks. Usually these checks are typical and the most routine parts of any doctor visits we have. But not that day.

Up until that appointment we had been noticing that Phoebe's pants, she was wearing a size 7 late last spring and over the summer, were starting to get a little loose around her waist. We knew that she was losing weight, but ever since birth she has had that pattern. She would gain weight in slowly for six months, then she would lose a couple of pounds over the course of six months. But her weight loss was never close to what she had gained and it never made her clothes not fit her.

The scale that day reflected what we were noticing. Since the end of August (so a total of 6 weeks) three pounds. While that might not seem like a lot of weight to loose, for Phoebe gaining weight has always been such a slow process, those three pounds were almost all of the weight she had gained since March.

Because this lined up with a pattern she has had since birth, the pediatrician did not think there was enough reason to be overly concerned. Phoebe's eating habits are excellent, she is in school 5 days a week, and there is a lot more she is doing in school than she has been used to. So we decided to wait it out, thinking she would start to gain the weight back.

As we waited, Phoebe's pants started falling off of her even more than they were in October. So last week I bought her size 6 pants. One size smaller than she was wearing. She wasn't feeling well and has been fighting off a cold for the past week. So even though she had new pants we hoped would fit, nightgowns have been her clothing of choice. Until today when she finally put the new pants on.

And I fell apart.

She has lost even more weight. Her new size 6 pants are too big and falling off of her too....She has lost even more weight.

After a call into the pediatrician, we have a new plan in place, at least for the next few days.

Phoebe is to eat 7 meals a day (which is not far from what she has been doing these past few months). Her meals need to contain more fatty foods and more protein (her favorite meals she has multiple times a day were suggestions they gave us to feed her). We are to keep a food journal of everything she eats and drinks. And most importantly, we are to monitor her output.

There is the possibility we will need to IV her, but they need a detailed idea of intake and output before they can determine what type of IV would benefit her the best.
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Update 88
Posted by Maria Murphy
7 months ago
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9-7-2016: Yesterday was a very exciting day for Phoebe! Not only did she start Kindergarten but as she was laying down getting ready to fall asleep she lost her 1st tooth!!!

She has been wiggling that tooth for weeks now, getting anxious for it to come out and have her first visit from the tooth fairy. She is so excited that the tooth fairy will finally come tonight for her! So many big milestones for her on the same day!

It feels good to post the good and happy events in Phoebe's life...not just the tough and sad ones!!
Let this be a lesson to all of us to cling tightly to all moments precious and priceless.

Best of luck Phoebe as you embark on this new school year. With love, The Murphys
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Read a Previous Update
Shruti Basim
21 months ago

Hoping for a cure and recovery for Phoebe

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Maria Murphy
35 months ago

Hello Tressa, Thank you for leaving your message. Our prayers go out to your daughter and your family as well. The Greens are determined to raise awareness and attention to ALPS and offer help to others like yourselves. Stay with us on this journey!

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Tressa Fleischer
35 months ago

My daughter, Presley, has ALPS as well! She just turned 3!! I will keep you and your family in my prayers, as I know your struggles!

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$5,625 of $50k goal

Raised by 77 people in 36 months
Created May 14, 2014
RF
$100
Rossomondo Family
3 months ago

Keep fighting Phoebe and we'll keep praying!

RM
$25
Renee Messina
4 months ago
$50
Maria Murphy
4 months ago

Always praying for you, Phoebe! Merry Christmas!

RC
$100
Rekha Chandrasekaran
5 months ago

Sending lots of positive thoughts and prayers .

EK
$100
Edward Knapp
9 months ago

continue to pray because HE does hear you

BN
$25
Becky Nastasi
10 months ago
PH
$25
Pamela Haviland
20 months ago
SB
$25
Shrut Basim
21 months ago
$100
Anonymous
21 months ago
$25
Anonymous
22 months ago
Shruti Basim
21 months ago

Hoping for a cure and recovery for Phoebe

+ Read More
Maria Murphy
35 months ago

Hello Tressa, Thank you for leaving your message. Our prayers go out to your daughter and your family as well. The Greens are determined to raise awareness and attention to ALPS and offer help to others like yourselves. Stay with us on this journey!

+ Read More
Tressa Fleischer
35 months ago

My daughter, Presley, has ALPS as well! She just turned 3!! I will keep you and your family in my prayers, as I know your struggles!

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