Alexandria (Alex, Alley)’s Story

Site created on September 6, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. This is a long story, so there will be multiple posts/entries...

THE BEGINNING...
I have followed the Caringbridge sites of friends and very special people over time and never in a million years did I ever think that I would be in the position to be writing a Caringbridge site for my own child, but here we are...
My 14 year old daughter Alexandria started feeling very tired in the spring of 2018.  She was having bad neck pain, migraines and severe fatigue.  She was having trouble staying awake.  She would fall asleep as soon as she got home from school and sometimes would fall asleep in the nurse's office at school. She began to feel very tired and sick-like she was getting the flu but had no fever in the beginning.  She was getting sick more frequently, had migraines almost constantly, had neck pain, had trouble with having enough energy to do much of anything-even get through the grocery store.

Then one day in April, her gym class ran track outside in the cold.  She came home complaining that her throat hurt when she breathed-I wasn't too worried.  I thought maybe this was the start of bronchitis or throat irritation.  She tried inhalers and ibuprofen-they didn't work.  After 5 days, we took her to Urgent Care.  They diagnosed her with tracheitis (inflammation of her trachea) and prescribed oral steroids for 5 days.  She finished those on Friday.  By Saturday, she started a severe migraine with dizziness,  We tried giving all medications that we had to help her headache and dizziness.  Nothing relieved the symptoms.  After 3 days without relief (we'd already been in touch with her pediatrician and neurologist), we took her to the ER.  They thought she may have a sinus infection that was causing her dizziness and migraine and that she was also dehydrated.  She was given IV migraine meds and steroids and 2 liters of fluid.  We were instructed to follow up with our pediatrician.  We went to our doc on Tuesday, 5/1.  Alex was placed on the antibiotic Omnicef for a presumed sinus infection.  By Thursday, she had started running fevers-up to 101.4.  She started to lose weight.  Her appetite had decreased.  She started to have night sweats-I attributed them to her fever and having been on the steroids.  


By the following Tuesday, 5/8, Alley had found a lump above her clavicle (collarbone) on the left side.  For anyone reading this--a lymph node felt directly above the clavicle is NOT NORMAL!  I took her back to the pediatrician.  I was told that she was sick with a fever and on antibiotics so we should just watch it, and that there was only one node felt-it was totally moveable (reassuring, right?!).  But, my daughter was still running fevers, felt terrible, had no appetite, and by this time, had lost 5 pounds in 7 days.  I decided to take her back to the ER to get more IV fluids, labs and further evaluation.
We got some results in the ER-what an unbelievable surprise.  She was anemic, her markers for inflammation were very high, and at that time, I requested an ultrasound of her neck.  The ultrasound showed scattered enlarged lymph nodes on the left side of her neck, with one that was suggestive for possible malignancy, but clinical correlation was needed.  The chest X-ray and abdominal X-ray showed nothing abnormal.  The ER doc ordered many viral blood cultures-looking for tuberculosis, mono, CMV, HSV, etc.-hoping that there was a viral cause for Alex's symptoms.  He said that her symptoms were caused by one of three causes:
1.  Viral Cause
2.  Rheumatologic Cause
3.  Malignancy/Cancer
He hoped and believed that she had the viral cause.  He weighted the last two scenarios about the same as far as risk of her symptoms being caused by them.  He contacted a Hematologist/Oncologist and we were told to follow up with that doctor within 1 week.

We saw the Pediatric Heme/Onc for a consultation on May 14th.  He told us that my daughter had iron deficiency anemia and that she should "stop touching" her neck.  When my daughter told him the lymph node hurt, he told her, no it does not.  She said, "But, yes it does."  He replied that the node was too small to hurt and that she should stop touching it.  When I told him that she had been having fevers for 2 weeks and severe fatigue and had missed 2 weeks of school already, he was shocked and told her to go back to school!  We were told that she had iron deficiency anemia and needed iron supplements.  He said her lymph node was not really enlarged-it was only 1 cm in size (supposedly), it was only 1 node and it was mobile-and even if it was cancer, 1 month wouldn't matter!!!!  I was shocked-but, here he is, a pediatric hematologist/oncologist-the "Specialist" the "Cancer Specialist" telling me that my daughter just needed iron and to get lab work done and come back in 1 month.  I left confused and angry-I was mad at how the doctor treated my daughter-blowing off her complaints.

I made a follow-up appointment with our Pediatrician to ask if she had faith in this heme/onc.-we had been seeing our pediatrician for almost 15 years-I trusted her judgement and opinion.  I was told that he was a great doc and she trusted his opinion.  I explained why I did not personally care for his style but would see him if he was the best.  I asked her to order a CT scan of my daughter's chest or abdomen and was told that she did not want to expose her to that much radiation if it was not needed-mind you, I am a Physician Assistant (and Registered Nurse) with medical education.  I have ALWAYS learned that supraclavicular lymph nodes should not be palpable or enlarged and in the setting of weight loss, fevers for 12-14 days, night sweats and fatigue--there was SOMETHING WRONG.  I found myself telling the doctor:
"There Is Something Wrong With My Daughter"
"You've known us for almost 15 years-this is NOT normal.  There is Something Wrong."
Then we heard the same things again-there's only 1 swollen node, its mobile and not fixed, she's being followed by heme/onc...then..."The thing about Childhood Cancer is that it is very aggressive"--"It goes quickly"--So, is that supposed to make me feel any better now???  She was banking on the fact that in most cases, kids don't get cancer-but they do...I asked to be referred to Mayo Clinic (I had already started the procedure but was told we would have to go through a review board to decide if Alex's case was worthy of Mayo seeing her.  A physician can call Mayo and expedite this process).  I was told that she did not think that Mayo could do anything that could not be done in Illinois.  At that point, I shut down-I just said, "Fine, then please at least repeat her labs" and add on a specific test (TIBC) that can help to  differentiate between different types of anemia-since I did not believe this was solely from iron deficiency-she agreed to order the labs and we left her office.


I decided to continue searching for answers as to why my daughter was so ill.  I took her to a GI doc on May 18th to see if there was a GI cause for her illness.  The gastroenterologist said she had never seen an enlarged supraclavicular lymph node in her 20+ years of practice!  She didn't think there was a GI cause for the enlarged node but thought she may have had an ulcer or gastritis from the steroids.  She put Alley on Prevacid daily (to protect her stomach), recommended iron twice daily and to repeat labs in 2 weeks.  if there was no change in her anemia, she would do an upper endoscopy to check Alley's stomach and esophagus for ulcers, etc.  In the meantime, she referred Alley to an Infectious Disease Specialist at Lurie Children's Hospital in Chicago to rule out any possible infectious cause for her symptoms.


On May 23rd, we saw the ID doc at Lurie's.  The doctor asked me to give her a synopsis of Alley's story-she took one look and felt the node and said that, "She does not have anything infectious.  There is not an infectious cause.   She needs this biopsied right away."  We were told to contact our pediatrician and ask for a referral to a pediatric surgeon.  Coincidentally, I had just learned that we were APPROVED to be seen by Mayo Clinic!  Now we were just eagerly awaiting our appointment at Mayo Clinic at the beginning of June.  Alley continued on as best as she could--she missed the fun trip to Great America at the end of the school year but was able to attend her 8th Grade Graduation!


(story continues in journal update--I'm new to this 😬...)

Newest Update

Alex's story Continued...this was written 8/2/18, just posted today 🤫...post #3

Journal entry by Tamra Downing —

So, here we are....
Alexandria has Classic Hodgkin's Lymphoma, nodular sclerosing type, stage 2B.  She's scheduled to have 4 rounds of chemotherapy.  We have finished her first 2 rounds up here at Mayo.  We are scheduled for re-staging to see how the cancer has responded this next week.
I am terrified.  This is so beyond what I ever thought my child would face.  She has been so strong throughout all of this.  When her hair was falling out in clumps (something very upsetting for anyone, let alone a 14 year old girl getting ready to start high school), she shaved her head LIVE ON INSTAGRAM!  She did this even though she had a tube inserted in her nose that was supplying her nutrition because she had lost so much weight.
I've watched her embrace the younger children with cancer and other diagnoses while in the hospital and become a mentor to try to help them not to be afraid of their port through which they will get medication delivered into their chest.
I've watched her "Rock The Bald"
I've watched kids stare at her and ask her questions about why she doesn't have hair or why she's in a wheelchair or why she has a tube in her nose.  She handles it with such poise and grace and turns it into a teaching moment-never feeling embarrassed-always welcoming.  My, oh my, I am Proud of my daughter.
She now says she wants to be an Oncologist when she gets older-but she says she doesn't want to work at Mayo-She wants to work in Illinois because she wants to be able to diagnose people.  She doesn't want another child to go through what she has gone through to get a diagnosis.  I remember May 7th, the night BEFORE we went to the ER the 2nd time, Alex sent me a text with a link to a lymphoma site-she said that she believed that she had lymphoma--she had every symptom except for one.  I, having medical knowledge, was fearful of the same thing, but I couldn't tell that to her-I just tried to reassure her that we would follow up with the "doctor" and that I did not want her googling symptoms or possible causes.  She was adamant that she thought that she had lymphoma...Multiple, multiple doctor's visits to multiple doctors in Illinois without an answer--come to find out that she was ACTUALLY RIGHT ALL ALONG!  She did have Lymphoma.  It took us traveling up to Minnesota in order for her to be diagnosed! 
I feel sorry for those people who don't have medical knowledge or parents that don't question doctors or parents who just accept that what the doctor says as Gospel just because they have the title of Doctor.  You have to keep looking for answers if you are not finding them.  Seek 2nd or 3rd or 4th or more opinions until you get help.  Even though we did not waste any time in getting into Mayo because I had been trying to get in even though we were seeing other doctors, my daughter is stage 2B/4.  Had I listened to the information that I had been given, I don't know what kind of position Alexandria would be in-thank God for perseverance!
Read More of the journal titled "Alex's story Continued...this was written 8/2/18, just posted today 🤫...post #3"
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