Some friends gave Phoebe some toys today and she has had the biggest, most infectious smile on her face since first laying eyes on them.
Photos: Lot of new adventures will happen with these toys
Phoebe has the kind of smile that can light up an entire room. You can be feeling sad, mad, grumpy or just blah and all it takes is one of her smiles, and she immediately melts your heart and makes you feel better.
Some friends gave Phoebe some toys today and she has had the biggest, most infectious smile on her face since first laying eyes on them. Photos: Lot of new adventures will happen with these toys
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It has been almost a month since the last time we saw the surgeon. It is now time to decide when to biopsy Phoebe's lymph nodes.
The surgeon noticed that her neck is now very tender to the touch, and it has grown some since the last time he saw her. I had explained the ER visit with Phoebe and how bad of shape she was in, and he determined that it would be in her best interest to do a biopsy and surgical removal of the nodes sooner rather than later. (There are three lymph nodes that are equally large and cause for concern) Surgery is scheduled for June 5 at 11 am Phoebe's oncologist called our insurance company to do a MD to MD peer review to see if he could get them to overturn their decision to not cover the testing that Phoebe needs.
The reps that he got on the phone hung up on him...TWICE! They would not even connect him to the MD. When he told me this he said I need to do a few things... 1-file a complaint with the insurance company for the way they have been handling this 2-file an appeal with the insurance company to see if that would help change their minds 3-write a letter to the insurance commissioner about Phoebe's condition and the insurance company's decision I am now more determined than ever to have Phoebe's voice be heard and to bring attention to this condition Phoebe was in preschool one day a week for three hours starting September 2013 until January 2014. Starting in January, she kept getting fevers and head aches, and even had an ear infection that we felt it was best, because she was missing months at a time now, for her to just stay home with me.
The preschool does their yearly pictures at the end of the year, and I was hoping Phoebe would be able to have her picture taken as a memory of her short time there. They knew that Phoebe had gone to the ER, so they called me to set up something special so she could still go and get her picture taken. They set up the photographer in a private room and let me bring her in at a specific time so she could smile for the camera. And for the class picture, they set the chairs up outside so Phoebe did not have to be in an enclosed area that the kids had all been in all day! I was so touched that they wanted Phoebe to have this experience and photo from her time at preschool. She chose to wear her favorite light blue Cinderella dress and sparkly silver dress shoes! We get the official photos back in three weeks and I can't wait! Photo: Phoebe during her class picture Phoebe woke up with a temperature of 100.8, very pale and lethargic. I went to change her diaper (she is potty trained during the day but has been having a hard time with overnights) and she was completely dry. All of my children have their last drink at 7 pm and go to bed at 7:30 pm. It was now 9 in the morning. In my gut I knew something wasn't right. I offered some water (which she always drinks when she first wakes up) and she refused.
I immediately called the oncologist's office to see what the protocol was since her neutropenia had been resolving over the past few months. They told me they did not need to see her but that we should go to the pediatrician for an evaluation. We got in to see the pediatrician quickly and she seemed to be getting worse. The right side of her face and the right side of her neck were swelling like they had done during her first hospitalization, and she was complaining that her neck was really hurting her. She was not vomiting, did not have diarrhea, and had no other symptoms of any illness. Upon exam they noticed her throat was red so the did a strep test, but that came back negative. The only thing we could do was to consult with the oncology office to see how they wanted to proceed. While we waited, Phoebe curled up on the examining table, placed her head in my lap and fell asleep. She still had not had anything to drink and she had not urinated at all. It was now 10:30 am. The doctors agreed that the best course of action was to send her to the emergency room for a blood test and fluids. When we got to the hospital, Phoebe was completely limp, struggling to keep her eyes open and too weak to move. I wrapped her in her blanket and carried her in my arms. She didn't even have the strength to hold on to me. When I walked into the ER doors the staff rushed to get me a wheelchair for her to sit in. As I placed her in it, she looked up with me with such pain and sadness in her eyes. It broke my heart. With how she looked they opted to triage her in a room in the pediatric ER. Her temperature was up over 102 now and she was turning red. They were expecting us because the pediatrician had called, so they already had their first plan in place. The nurse had a hard time starting her IV because of how dehydrated she was. This is also one of the only times I can remember an IV or blood draw hurting Phoebe so much. Once it was in place they started her on her first bag of fluids and gave her some tylenol. Phoebe fell asleep curled up next to me. It took a few hours but her fever eventually broke. They say the highest it was was over 103. We spent a total of 9 hours in the emergency room and she slept almost the entire time. During that time it took 3 big bags of fluids before Phoebe was hydrated enough and started to urinate. Her blood tests came back showing an increase in her white cell count. Her neutrophils alone were over 15000. Something was going on and their best guess was virus. Since she had started to perk up, urinate, her fever had broken and her neutrophil count was so high they decided to discharge us. In all honesty I was really angry. Sure, I wanted my baby home with me, but with all the information and test results I had given them about everything she has been going through the past few months, I felt as if they had dismissed all of that and focused solely on last years issue of neutropenia. Her neck and face were still really swollen, so they prescribed an antibiotic and told us to follow up with the pediatrician the next day. And if they thought it was viral, why would they give her an antibiotic? Antibiotics do not help for viruses. Knowing there was nothing more they could do, or would do, I signed the discharge papers to take my little girl home. She slept with me that night while my husband slept on the couch. Photos: 1-in the pediatricians office 2-on the way to the ER 3, 4, 5 & 6-in the ER 7-at home after discharge Phoebe's older sister, Natalie, takes ballet and jazz. The ballet class was chosen to perform their dance recital number for our township festival. After a hectic week with doctors, feeling cooped up in the house and Phoebe feeling well with little pain and discomfort, I decided it would be a nice treat to bring her to watch her sisters performace.
She loved it so much she kept saying "My turn now?"...She wants to dance! Photo: Excited to be watching her sister dance In the past few weeks we have been spending a lot of time at the specialists receiving test results, ordering more tests, and processing everything we have been finding out.
Autoimmune Lymphoproliferative Syndrome They believe we have a diagnosis. Phoebe's results show she has a very rare condition that affects her liver, spleen, red blood cells, white blood cells, lymph nodes, tonsils, and puts her at an increased risk of lymphoma and an even higher risk of blood cancer. There is no treatment, and no cure. All of the doctors have been wonderful, most especially the immunologist who got this ball rolling to lead us to this diagnosis. He put pieces of this puzzle together and took a shot in the dark and turned out to be right. We spent a lot of time with him last week going over all of the test results we have for Phoebe. He said he was deeply sorry for this diagnosis and that he had hoped that it wasn't what it was. He said what Phoebe's counts and tests are showing is that her body and immune system are a runaway train and we have no way to stop it. All we can do is handle each thing as it comes. There is still more testing to be done. This is a genetic disorder so we will all need to go for genetic testing to see exactly what gene this is, if any of the other girls have it, and what this could mean down the road if Phoebe ever wanted to become a mommy. And we still have to get the test the insurance company won't cover for the "official diagnosis". We go for more blood tests tomorrow to check her B12 and lipids, and we should be getting the results from last weeks blood test back too. The immunologist and oncologist are both disgusted with the answer we got from the insurance company yesterday. They said there is nothing more we could give them because they have everything we have. It just comes down to them not wanting to pay because of how rare this condition is, and that the only place that does this test is Cincinnati's Children's Hospital. So we got what we have been praying for, an answer. We are limited with what is known about this and how many doctors have heard of it/dealt with patients who have it. We have an excellent team of doctors in place, Phoebe adores them all and I trust them completely. And they don't hesitate to consult with each other, and other doctors through out the country on what to do next. So now I ask for you to pray that Phoebe can help teach these doctors about this. The more they can learn and know about this, the more people they can help. We want them to learn from what she is going through and will go through so they can help other children who develop this and hopefully help keep other parents from going through this long drawn out fight we have had to just to get blood tests done. Photo: Trying to do happy fun things through it all Insurance is NOT covering the tests that Phoebe needs. It is completely out of pocket. The condition is too rare. They said in order for them to consider paying part of it they require specific things. And the specific things they require are the results of the tests that they are refusing to cover.
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AuthorThe true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you. Archives
June 2021
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