We have a lot of appointments that we are going to need to make for our sweet little girl...
Phoebe's neck has quite a few large masses protruding and there is no way to tell if they are individual masses or multiple ones fused together (like last time) until we get in to her specialists and have an ultrasound.
What makes this more frustrating is that insurance has officially denied the whole genome testing that we have been waiting to have run since November. We have exhausted all of our appeals and they are not budging.
The fight that started on the 1st of this year is the same fight Phoebe's family is still battling today. Insurance is still refusing to cover the second genetic testing that we need, and because of this Baylor has not started to run this test.
Adrienne reached out to Phoebe's immunologist at CHOP in March, and within a few hours they wrote a letter of necessity to be sent to insurance and contacted her geneticist to see what more they could do to help get the testing covered.
Phoebe had an appointment with her lead doctor, the immunologist in Berkeley Heights at the beginning of April. He reached out to the geneticist as well, to see if there was anything he could do in regards to the testing. Since the blood for this test was drawn in November/December, we should be getting the results now, not still waiting for the test to start.
Phoebe needs this second genetic test to, 1) hopefully give us answers to what Phoebe has and what she is facing down the road and 2) give us a treatment/maintenance plan for Phoebe. From the way insurance is acting, it looks like the only way to get this test done soon is for the family to try to pay for it themselves, and with how much it costs it is definitely putting a lot of stress on them.
When we welcomed you 365 days ago we were blissfully unaware of what you had planned for our family. Things were starting to look brighter with Phoebe's health and we were naively thinking the worst was behind us. We never thought the curve balls would keep coming, or that they would come faster and harder.
You have pushed us to our breaking points and beyond. You have fought us and challenged us every step of the way. You have offered glimmers of hope only to snap them away faster than I could blink. Every day has been a roller coaster ride.
But you know what 2014? You have not defeated me. For as much as there are times I feel like there is nothing I can do, that I can't possibly push through another wall, that I don't have any fight left in me, that no matter what I say or do it won't make a difference or help, that I can't handle any of this, I will never stop fighting. Until my last breath, I will never stop fighting.
This fight is personal for me because it is affecting my own daughter, but this is more than just a fight for my family. This is a fight for every family, every person, every child that is facing what our family is. Medical issues, mounting medical costs, insurance picking and choosing what is and isn't covered, the world of Rare and Unknown diseases. Too many people are going without diagnoses, treatment, medical supplies and medical care.
You sure gave us a run for our money, 2014. You tried to get the better of us and you tried to keep us silent, but you didn't. You did however awaken a powerful voice. A voice that is being heard louder and louder. A voice that is being echoed by everyone who hears it.
So 2014, I have only one thing left to say to you...ROAR!
It was a long weekend for Phoebe. She didn't drink or eat a lot on Saturday, even after we got home from the pediatrician. Since she was still hydrated from her trip to the ER, we followed the doctors suggestion of letting Phoebe eat and drink what she wanted when she wanted. Even though he told me not to obsess and worry too much, that is hard thing to do.
Sunday she was feeling a little better. She had the occasional burst of energy, but they were short lived and they were few and far between. Phoebe also took in more fluids.
Today was a little better still. As soon as she woke up she said she was hungry and asked for a giant bowl of cereal. This was a moment of pure relief for me, but it didn't last all day. Her intake of fluids and food were better than they have been, but they were still not stellar.
There's nothing you can do when she won't eat or drink.
So we continue to take it day by day, just as the pediatrician said. Our hope is that since with each passing day she is doing a little better that tomorrow will be better too.
Since Phoebe woke up on Christmas morning, she had not been feeling the greatest. She had been swelling, having discomfort and pain and she had not been drinking much at all. With not taking anything in, she hadn't been going to the bathroom.
Friday after Christmas was no different than Christmas day. Phoebe was still swollen, in pain and still not drinking. We continued to try to get to her to drink, but it was harder than the day before...off to the ER we went.
Two IV bags later, Phoebe was asleep in the hospital bed and they were planning to discharge her. Their main concern was getting the fluids in to her since her labs were not indicating anything. They were trying to avoid admitting her because with an immunocompromised child, their body is at high risk for nosocomial infections. We were discharged at 1:40 in the morning.
Phoebe is still not drinking, is still swollen and in pain and she is now really pale with big dark circles under her eyes and very cranky. The pediatrician said she is hydrated enough from the fluids she got last night that we have at least a day to two days before we would have to be concerned about going to the ER again for more fluids. He said the main thing is to keep ahead of what's going on with her before it gets out of hand. He said he agrees with the ER doctor that that is exactly what I did yesterday. We got her to the ER before her dehydration got so bad that she would of had to be admitted no matter what.
Now we just wait and hope that she starts to drink more.
Photos: 1- In the ER after being seen by the doctor
2- IV line started, blood drawn, now just waiting on fluids
Exactly two years ago today The Greens got their first lab results showing Phoebe had health issues. Little did they know what was going to come.
Phoebe now has 12 doctors in 10 specialties involved in her care.
Please help Roar with Phoebe.
This little girl is a fighter!!!
Fire in the fireplace, lighted garland around the windows, sparkly holiday lights twinkling outside, and Phoebe curled up under her favorite blanket on the love seat watching the magical snow fall through the window.
Phoebe's specialists conferenced on November 22nd and that same day Adrienne got a phone call from Phoebe's immunologist here to discuss what what the plan was.
He told her that a big part of the discussion was that the CHOP specialist wanted one specific medication to be just a "bridge" medication until they get Phoebe's definitive genetic results. Once they got those results, most likely they'd want to change the medication.
He wants to wait for the genetic results to start this medication or another one like it. And after talking with her other doctors they agree. He does not want to start this med, see it help (even a little) and then stop it in 3-4 months and then put her on something else, or add another medication to it.
He did say something we could try is naproxen. He feels that that is the safest "bridge" medication to give her. He called in the prescription as soon as Adrienne hung up. The pharmacist called a little while later to tell her the medication had to be ordered and it would be ready after 2 pm on Friday.
Now don't get too excited....this does not have a happy ending just yet.
Friday afternoon Adrienne got a phone call from the pharmacist saying that there is an indefinite back order on this medication so they cannot fill it, no one can. They said they were going to call the immunologist to see if there was another route he wanted to try.
A little while later the immunologists office called to tell het the same thing about the back order, and that their "bridge" medication will continue to be what it has been for the past two years....over the counter ibuprofen or aleve.
Adrienne and Dan have faith in their doctors, and completely trust the team in place, and know they all have nothing but Phoebe's best interest at heart. But each day this goes on with no answers, no treatments, and seeing her go through what she does it is another piece of their heart that breaks that they cannot help their baby or make this better for her.
Please help by showing you're support. Many thanks!!!
About 10 days ago Phoebe went to the lab to have her blood drawn for the repeat NK cell assay. This test determines what medication she would try.
Adrienne got a phone call from the lab apologizing. There was a computer glitch, so the wrong tubes were dispensed and the test could not be done with the blood they have. Phoebe needed to go back in for another blood draw.
They were hoping to get the results of the test last week so they could see which medication to try, instead they have to continue to wait.
Some Early Halloween Fun! Phoebe was finally feeling better after a week of not feeling well at all.
All the kids first went to the Safe Trick or Treat hosted by Bernards Township Regional Chamber of Commerce in the center of Basking Ridge.
Later in the afternoon they went to the Berkeley Heights PBA Trunk or Treat at their police station.
All of the girls had so much, especially Phoebe! She loved seeing familiar faces of people who she has met at some of her events. It was special for the family to celebrate Halloween with these communities!
Adrienne walked into the girls room yesterday morning to get them ready for the day to find they had already chosen their shirts.
Phoebe said, "We roar Mommy!"
Love this little girl...she's such a rock star!!!!!
(Photo of Naomi and Phoebe)
A TREATMENT DELAY!!
Phoebe's immunologist spoke with Adrienne and discussed the visit to CHOP in more depth.
During their discussion, he mentioned that there was a slight change in plans on how they would proceed with Phoebe.
The most worrisome levels that she has right now are her NK cells. She has very few of these cells, and the few that she does have have very little function. She needs to repeat this testing first, before starting any kind of treatment.
If her levels come back normal, her last test could have been a fluke or an error and she can start her immunosuppressant treatments. If her levels come back as low as the last test, she will not be able to start her immunosuppressant treatments.
He said that she also needs to look into the full genetic testing. While he agrees that it needs to be done he wants to find the best way to get it done. If the blood is drawn in New Jersey and overnighted to a lab for the testing, they would have to pay for it all up front and then fight with insurance to be reimbursed. Since it is a 20 thousand dollar test, he does not want that to be the way they go about this.
He wants to do some leg work and conference with the immunologist in CHOP to see what the best way to proceed will be. Limiting Phoebe's travel is one of his top priorities.
Excellent news!! Phoebe has found her "Patch Adams"!!!!!
She saw the immunologist at CHOP last Thursday who spent 90 minutes going over Phoebe's entire health history, labs, biopsies, symptoms, and did a thorough physical exam! What she said still has The Greens crying tears of joy and hope!
She has a plan!!!
She thinks there are a few rare issues going on with Phoebe that have been causing the issue with getting a definitive diagnosis.
She wants to do some repeat testing on the levels that are the most worrisome and she wants to do more detailed testing including a complete genetic work up! She said the genetic work up will be a fight with insurance because it runs about 20k, but she said "If you guys are up for a fight, so am I!"
She also said it's horrible that this has been going for 2 years and no one has tried to "treat" anything that has been going on. She says Phoebe deserves a better life than that.
She wants to try a treatment regimen!!!
She wants to start her on an immunosuppressant injection medication once a day and see how she does in a month!
If this medication helps There should be a major improvement in Phoebe's symptoms and overall health in a few weeks!!!
She is also going to work with Phoebe's immunologist here in NJ (who she knows professionally through CHOP) so they won't have to travel so frequently to see her. She knows these trips take a lot out of Phoebe and she wants to minimize stress to her system!!!
It is far from over, but hopefully the meds will help and Phoebe can start to have the life she deserves!!!!
Phoebe met with one doctor today at CHOP who was super nice and informative. He referred her to another specialist that she will be meeting with on Thursday. So a couple more days in Philly.
Let's hope some good and useful news comes from these meetings for little Phoebe!
It has been four weeks since Phoebe's appointment at Cincinnati Children's Hospital. Throughout those weeks the Greens have been slowly receiving the results of Phoebe's tests. With the number of tests they ran we knew that it would take two to three weeks for all the tests to be complete and interpreted.
On September 16th they got a call from the hospital.
Adrienne would love to say that this phone call gave them a direction, a path, answers even, but it didn't. In fact, it did the exact opposite.
In her words...
"The reality of a rare disease is that answers are few and hard to find. What little is known about a rare disease becomes the definitive criteria for diagnosis, medication, and treatment plan. The known gets put in box, and each person must either fit perfectly in that box or you get met with a shrug and an "I don't know".
What I got met with today was that they do not have enough information to definitively confirm a diagnosis, of any kind. She has a few levels that have them really concerned, a handful of levels they want to monitor and some good levels. She will need further work ups and more detailed testing, but they want to wait so, as he said, "we don't perform unnecessary testing when we don't know the full scope of what we are dealing with".
The box that these doctors are trying to get Phoebe to fit into first started to be studied at the NIH in 1990. It wasn't until 1995 that the NIH named this newly identified condition. And as the Fellow said "Immunity is a complex creature. We do not know or understand every aspect of it or the diseases associated with it. We may never know."
I have known from the beginning that we would only be able to treat symptoms as they happen, but telling a mother to sit and watch as her child goes through things is torture.
I explained to the Fellow, doctors do not see what every day life is like for those dealing with illness. All they see is how the patient is doing during an exam. I told him they cannot make a conclusion about a patient's life and how their illness affects them every day based off a brief 10 minute encounter and lab results. Especially when both can change very quickly. As the parent caring for the child, what I say about how she is doing and what she is experiencing should be taken more seriously. Especially since out of the 10,080 minutes in a week, one doctor on average will only see her for 20 minutes, while her family sees her the whole 10,080."
Some of Phoebe's test results are in from Cincinnati Children's Hospital.
Phoebe's labs show a number of different levels being elevated and a number of different levels being low. We are not sure exactly what all of these tests and levels mean, but Sue said she would forward the results to the doctor at Children's Hospital of Philadelphia that we were referred to.
The Fellow reports in his notes that they were repeating many panels in their lab, sending for a formal apoptosis assay, and possibly evaluating her DNA for other extremely rare causes of ALPS. He also states that it is "prudent to fully evaluate her immune system given her atypical features."
Every lab result, ultrasound report, biopsy result and ultrasound images Phoebe has had have been forwarded to Children's Hospital of Philadelphia.
Phoebe has an appointment to see the specialist in Philadelphia on September 30.
We hope this is good news and hope this specialist can help Phoebe. After the experiences out in Cincinnati, The Greens are finding it hard to be optimistic and excited about this upcoming trip.
With Phoebe turning 4 in October, this should be her second year of preschool with her going 3 mornings a week. Instead, she is on the schedule for just one morning a week. And even that depends on what her body will allow.
Phoebe so desperately wants to go to school like her big sisters. She even insists she has to get a backpack and other school supplies just like them. She picked out a special outfit to wear on the first day and packed a lunch in a brown paper bag.
While she excitedly talks about going to school, her mom prepared what they call her "special kit" that will stay in her backpack. To accommodate her medically, her backpack is transformed into a first aid kit. It has a thermometer, tylenol, bandaids of various sizes, gauze pads, cloth tape, neosporin, neosporin foaming wound cleaner, antibacterial gel, wipes, doctors numbers, and a detailed list of what to do in each possible scenario.
Before she went to bed all she could talk about was how she is a big girl and going to start school tomorrow just like her big sisters. She even told Naomi that she would miss her.
All her family can do is make each day she goes as special as possible, and pray they don't have to use anything in the kit.
Phoebe and her mom Adrienne drove all the way out to Cincinnati Children's Hospital on August 25th to see a doctor that specializes in ALPS. The following day they visited the animals at the Cincinnati Zoo and Newport Aquariium. Phoebe's favorites were the tiger (her symbol) and the penguins.
The following day (yesterday) they met with the doctor who left Adrienne feeling annoyed and disheartened. He didn't want to use any test results from other labs as he only trusts his own. His opinions were contradictory to his colleague in NJ and recommended a doctor who specializes in ALPS at CHOP. If Adrienne had been told this it would have saved a lot of time and money and especially stress on little Phoebe!!!
Now on to CHOP....
The Greens still have not received a letter from their insurance company explaining that they need the doctors to resubmit all the codes, evaluations and other necessary documents in order for the claim to be considered.
They started the 45 day countdown to receive this information on July 15.
However the online portal still says that insurance needs this information!!
We are all trying to stay positive and not let this completely crush us, but to be honest, it is getting really hard on The Greens.
And Phoebe has a big appointment coming up next week at CCH for many more tests...
We feel no family should ever have to face the issue Phoebe and The Green Family is facing with insurance. No person, especially a child, should have to go without necessary tests, procedures or treatments because insurance picks and chooses what is and is not covered.
Our hope is to inspire as many people as possible to roar together to help make a difference. Even the smallest act of kindness has a big impact on someone's life.
Please continue to Roar with Phoebe !!!!
Phoebe has an appointment on August 27 at 10:00 AM with an ALPS specialist at Cincinnati Children's Hospital!!
They are going to get there a day before and stay through the day after. The hospital is going to call back and assist in helping them find a place to stay and things to do while there and not at the hospital.
The Greens are so thrilled and feel blessed to be going!!
Not sure if future trips out there could be needed and if so travel and lodging expenses are not covered by insurance....
Important Update: Adrienne spoke with the amazing people at Cincinnati Children's Hospital today and they are working on getting Phoebe in their system and setting up her appointment.
There are two doctors that specialize in rare disorders that they want her to see. Due to their high demand they are looking at the end of August for an appointment for her!!!
We now just need to raise more funds for travel and lodging expenses. We appreciate all the support our wonderful community and it's outreaches have given. So many wonderful people have been so generous!!!! Thank you to all!!!!
We want Phoebe's roar to be heard across our great nation!!! Please share this with all your family and friends.
Despite receiving a letter that insurance will cover a portion of the cost of tests, they are still undecided. Additionally they are giving The Greens the runaround and requesting that the same information be resubmitted for them to "consider" the charges... All within 45 days!!!!
I know patience is a virtue but how can you tell a mother to be patient when she has a sick child on her hands.
I wanted you all to hear Phoebe's moms words as they appear in her blog..."It's been 5 weeks since surgery, I know this is part of her disorder, and I know that the recurrence of this is high, but I was still hoping that we would have months or year(s) in between episodes.
When I found these it felt like someone punched me in the gut and knocked the wind out of me. She isn't even 4 years old yet."
Yesterday Phoebe visited with the Summit Police Dept to talk about her involvement with them and National Night Out. She had a great time meeting everyone and Officer Daly gave her some really cool stuff too!!!!
It has been four weeks since Phoebe's blood was sent to Cincinnati for the second round of testing. A handful of results are in...
ALPS is like an umbrella with three handles. Each handle is a different thickness representing the three different known forms of ALPS. The thickest handle is the form that has the FAS gene mutation and accounts for 70-75% of the cases of ALPS that has been seen and studied (the mutation they just tested Phoebe for). The other two handles account for the remaining 25-30% of ALPS cases, which are the two rarer forms of this rare disease.
Phoebe's test showed no FAS mutation. They suggest further testing including genetic counseling.
This means that she has one of the rarer forms of a rare disease.
Although the biopsy came back benign (which of course is GREAT news) the doctors are still concerned about the size it was, the color it was and that it wasn't noticeably that large from palpation and visual exams. This just means Phoebe will need to undergo more ultrasounds and possibly better imaging going forward.
Little Phoebe had a fever yesterday that seems to be bouncing around between 101 -102 today. She is eating, drinking and in good spirits though. Still no news on the blood work sent out weeks ago. Meanwhile the bills are starting to pile up!!
It still never ceases to amaze me how the spirit of a local community comes together to help support someone in need. Ours did just that!! The owner of #AnythingFloral organized an exciting fundraising event to help #Phoebe and The Greens fight their battle against #ALPS. Friends, families and strangers have united in their efforts through giving donations and time to show their loving support.
More information can be found at the following link for #Phoebe'sComedyNight this Thursday June 26 www.facebook.com/events/251194495067617/
We appreciate everything our local community and our gofundme community is doing for #littlePhoebe.
Little Phoebe went shopping with her mom after hearing about the biopsy results yesterday. So in celebration she picked out some cool "Roar" gear that shows off her fighting spirit!!! I think Katy Perry has some competition!!!
#katyperry #roar #littlephoebe
Phoebe update: BENIGN!! It came back benign!! Her biopsy shows a huge overgrowth of her T cells. Incision looks great, steri strips are off, and she wanted to eat a big bowl of rice pudding!! Today was a BIG win!!!
The Green Family and my family,The Murphys, would sincerely like to thank all of you who have generously donated to the fund to help defray the medical costs for little Phoebe. Through your direct online donations, check donations, and the generosity of... the Bernards Twp. and Warren Twp. PBA's, we have raised over $5,000.00-Now at 10% of our goal! Please "share" and 'like" this site, forward to whomever you can, and check out Phoebe's medical history blog, "Roar with Phoebe" at http://roarwithphoebe.weebly.com/
A surprise treat arrived at Phoebe's house on Saturday. Someone arranged for an antique ice cream truck visit allowing Phoebe and her sisters to pick out a cold dessert. It was a very special end to a lovely summer day!
Phoebe has had a relatively good week and the incision is healing nicely. Our biggest news is her roar was heard by our assemblyman who personally put the insurance issue as a top priority. Together with DOBI, they have now gotten insurance to agree to cover a portion of all the testing!
The Green Family and I would like to extend our sincere thanks to the Bernard's Township PBA for their generous donation and show of support at last night's event. Thank you as well to Warren Twp PBA who without hesitation also generously matched their donation! Another anonymous person attending matched the original donation as well! Additionally others approached the Green Family with offerings of assistance towards Phoebe's battle with ALPS.
You all touched our hearts and we want you to know how much your generosity and support is appreciated. Little Phoebe truly had the best time!
We live in the very best community and are blessed to have you in our lives.
Surgery went smoothly today, only took 45 minutes. The doctor removed 3 lymph nodes that had fused and grown together. The one new grouping was 2 inches in length! Very concerning. Now we wait on pathology. Phoebe is home recovering. She's sore and tired but her spirits are up!
Tomorrow morning little Phoebe is going in for surgery. Today is more blood work which will be sent off for more testing. These types of illnesses shouldn't happen to such little children. Please send your good wishes and be sure to share this link with others in your community.
We've just heard (and are appealing) that since the insurance company doesn't know what ALPS is or any of the testing needed it is "experimental" to them. Therefore they won't cover it.
Please help us continue to raise funds for this beautiful little girl!
We had a scare yesterday. Little Phoebe was rushed to the ER after not eating, drinking or urinating. She had a fever, swollen face and painful neck from the mass. She was so weak she needed the aid of a wheelchair to bring her inside. IV fluid and Tylenol finally helped and after many hours she returned home.
Just got word that more blood tests are needed to narrow down which form of alps Little Phoebe has. It will take 2 weeks to get the results and then trips to either Philadelphia or Maryland are in order.
Please help us cover the imminent travel and hotel stay costs.
Thank you for your support!!
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:
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