Help Little Phoebe Please!!

$5,525 of $50k goal

Raised by 76 people in 31 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 90
Posted by Maria Murphy
8 days ago
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
27 days ago
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
3 months ago
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
+ Read More
Update 87
Posted by Maria Murphy
4 months ago
From Phoebe's mom Adrienne:
Phoebe Update: I know I have been pretty vague since we have been back from the NIH, and that is partly because I was hoping to have some more information rather than sharing "they said....but don't know what to do other than wait" and the other part because we have been living with "they said...but don't know what to do other than wait", and that has not been easy to deal with at all.

We have added 2 new specialists to Phoebe's team of doctors here in NJ since our return from the NIH. Both were added because of information and findings we were given while in Maryland.

The first specialist is a neurologist. The NP, lead doctor and genetics team found many "flags" with Phoebe's extensive physical exams. They discussed possibilities of Spina Bifida, tethered spinal cord, and other complex rare diseases (cause rare is who Phoebe is) that are impossible to say let alone spell off the top of my head. The neurologist could not rule any of the possibilities out as she found delays in every area she examined (global development delay), low muscle tone (hypotonia) and spine deformity. She has ordered a bunch of lab work and wants to do an MRI from the tip of Phoebe's head to the tip of her toes. But the reason that brought us to the other specialist has put the MRI on hold for now.

The second specialist is a pulmonologist. A few weeks before we left for the NIH Phoebe developed a dry cough. We took her to her pediatrician, who found no reason or evidence for Phoebe to have this chronic cough. Listening to her lungs sounded crystal clear and examining her fully showed no infection or illness. Her cough didn't go away. She went to the NIH still having this dry cough and her doctors listened and examined her and couldn't hear or see a reason for her to be coughing. The CT, however, showed a completely different picture. The images showed reticulonodular and ground glass densities in her right middle lobe. Which means her right lung's middle lobe has atelectasis (collapse of the lung).The CT also found a prominent enlarged right lower paratracheal lymph node.

At our first visit with the pulmonologist, he did a nasal swab checking for any viruses that could be the cause, but all results came back negative. He also tried a round of antibiotics to see if aspiration was the cause (which was a possibility because she has difficulty swallowing), but without other symptoms or signs of infection he felt this was the least likely case. Two weeks later we returned for a pulmonary function test and to follow up with him. Phoebe's cough was still present. We have incomplete results with her pulmonary function test. The first round showed some signs that could be consistent with asthma (also atelectasis), but given her age they were unable to complete the second part of the test. He ordered a chest xray and started her on a steroid inhaler at two puffs two times a day for a month. Today is day 5 of the inhaler, and I am sad to say that so far it has not made a difference. The pulmonologist is waiting to hear back from the NIH about their feelings/concerns of a repeat CT scan and advice on proceeding, especially if this lung issue is a part of her immune disorder. (which is a possibility - Middle Lobe Syndrome can occur in patients with immune issues like Phoebe)

What we do know is that our next step after trying this inhaler, especially if it does not help, is a lung biopsy at CHOP.

Which is why her MRI is on hold. She would need to be sedated for an MRI, and if she needs a lung biopsy they don't want to sedate her twice within a few weeks of each other.

The NIH also did not run all of the tests they wanted while we were there. Because many teams consulted and met her, they have been waiting for each team to conclude with their own evaluations and tests they want to have done so the lead doctor can compile a complete list of tests to run. We should hear from them within the next week or two, and then they will be sending the vials, kits, collection containers etc to Phoebe's immunologist so we can draw the samples here. Once the samples are drawn, they will be overnighted back to the NIH for the tests to be run.

So unfortunately, I cannot say much more than what they said, and that they really don't know, and all we can do is wait. And while it does seem unfair and cruel, I have to keep repeating what Phoebe's immunologist told us when we returned home. "If they had an idea, even if it was a rare disease but one they have heard of or know things about, they wouldn't have accepted Phoebe into the program. The NIH wants her because she is THAT rare, with probably more than one rare disease. And they won't stop researching. Because she is helping so many people by being there."

Which, from day 1, is what we have always wanted. We have always said our fight, a purpose to our events, the reason for our blog, why we participate in Rare Disease Day in DC, basically everything we do is NOT just solely about Phoebe. It's for ALL the families that struggle with rare disease, insurance denials, and chronically ill children/family members.
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Shruti Basim
16 months ago

Hoping for a cure and recovery for Phoebe

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Maria Murphy
30 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
30 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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$5,525 of $50k goal

Raised by 76 people in 31 months
Created May 14, 2014
RM
$25
Renee Messina
1 day ago
$50
Maria Murphy
1 day ago

Always praying for you, Phoebe! Merry Christmas!

RC
$100
Rekha Chandrasekaran
27 days ago

Sending lots of positive thoughts and prayers .

EK
$100
Edward Knapp
4 months ago

continue to pray because HE does hear you

BN
$25
Becky Nastasi
5 months ago
PH
$25
Pamela Haviland
15 months ago
SB
$25
Shrut Basim
16 months ago
$100
Anonymous
16 months ago
$25
Anonymous
17 months ago
MW
$100
Michele Wilson
18 months ago
Shruti Basim
16 months ago

Hoping for a cure and recovery for Phoebe

+ Read More
Maria Murphy
30 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
30 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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