Phoebe has been having a rough time so far this summer. Her body does not handle intense temperature changes very well, so with the high humidity and heat she has been swelling a lot more, experiencing more pain and discomfort and wanting to just lounge on the couch under her blanket.
Her blanket...the one thing she always asks for when she isn't feeling well. The one thing, that as soon as you see it with her, your heart drops cause you don't know how the rest of the day is going to turn out for her.
The Green's have received a $2,000 bill for the "snipet" genetic test that was done in December on Phoebe. Insurance had initially claimed they would fully cover this test, but according to the bill they received from the lab, insurance changed their minds.
The insurance company has all of Phoebe's medical history, doctor's notes, tests and letters of necessity, but have still decided that the majority of this bill is not covered by insurance.
Apologies for my delays in between posts. I like to keep our kind and generous followers in the loop on Phoebe!!
Since insurance denied having a full genetic workup done, there was a different genetic test Phoebe's geneticist wanted to try to have done. In this test they could pick 100 genes to have tested and mapped and hopefully one of the chosen genes would give us answers to what is going on with Phoebe.
As of today, we have still not heard whether or not insurance will cover this test. With the way insurance has been, there is little hope of being able to get this necessary testing approved and covered.
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.
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: