On Tuesday Feb 18th on my way to work I got a call from the Children's Specialty Center of Nevada, (the hematologist oncologist) office asking that instead of waiting for our appointment this coming Friday, they wanted to see us right away..
This of course scared David and I so much!
When we were getting ready to go Lilly who had been having a bad day started screaming and crying that she didn't want to go... We had to carry her out of the house crying to get her in the car. She isn't feeling well and she is so done with all the doctor visits and test!
One we arrived we filled out lots of paperwork and then taking back to get Lilly's vitals. She has lost 3lbs in the last 2 months...
We met our doctor and he was wonderful with Lilly. He spent a lot of time talking to us, asking tons of questions and trying to explain as best he could what "could" be going on and what steps we will be taking.
He said that she doesn't show signs of having cancer (leukemia) but that it is not off the table as it can hide and could be hiding in the mass on her neck, but he feels that it's not going to be it, such a relief to hear that the risk of that being why she is sick is so low made David and I breath a little easier!!
But he did state that she is sick, something's are off in her blood work and we need to do more testing and then a biopsy of the lump on her neck. He mentioned things like "autoimmune" and "arthritis" as possible causes for her condition.
They took MORE blood!! Lilly did amazing, didn't even cry!
The doctor gave Lilly a new princess barbie and 3 lolly pops and the staff gave her a princess coloring book and crayons. The place is made for taking care of children and it was really nice!
So as of right now doctors orders are..we are watching Lilly closely, if the lump/ mass on her neck gets bigger, she runs a fever, more pain in her joints or new joint pain in a different location or just seems sicker we will go back in right away. She is to keep away from sick people and we have to reduce her exposure to any illness, so no day care and play dates only after the child has had a full check up with their doctor, just kidding on that. But we do have to keep her from getting exposed since she is not able to fight off infections right now.
The blood test they are doing takes up to 2 weeks so we have an appointment in 1 month to go over the results and plan our next steps such as doing the biopsy. The biopsy will give a lot of answers.
If you are wondering like David and I have been, why are they not doing the biopsy right away... Well I have a wonderful friend Tonya who has great knowledge regarding medical stuff as she has training and has a daughter who was very ill for a long time. So Tonya explained it to my husband and I in these terms.
Here is a copy of her message response to my questioning why not biopsy now! Why all the test?
"The Biopsy is just a rule out thing. They do it so they can absolutely say "This is NOT Cancer". They're not jumping to it because they don't feel this is cancer and they don't want to put her through ANY unnecessary stuff. Believe me, if they did, you guys would be scheduled & having it done by the end of the week !!! But before they go with an Auto immune diagnosis, they have to do EXACTLY what they did to Hayden & do a biopsy to Rule Cancer out. Once they have that confirmation, then they can treat the auto immune. They're hoping that the auto immune will calm down. Hayden's flares up & goes away. So they're hoping that this is a "flare up" on lilly's part & in a couple weeks, she'll calm down. They're waiting also because they'll do labs at that time & see if her markers have changed at all to point to once specific auto immune. Like if she's better, & Her rheumatoid arthritis markers are down, then they know it's that type of auto immune. Medical looks at things to Rule out MORE than they look at things to Diagnose. So many diseases have multiple symptoms that are the same. You don't want to just jump in & start poking around. So you rule out the easier ones first by bloodwork & Time, then go to the next step, then the next step. It's why the medical world fascinates me & why I love working in it. Albeit it's with animals, but it's even MORE so the rule out process with them because they can't tell you what's wrong."
Thank you Tonya!!!
Tonya has been a major help through all of this, great advice and full of information and her amazing ability to translate doctor speak to something we can understand!
Thank you to my mom for taking care of Lilly while we are at work, keeping her safe and germ free
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