Ella is now seeing her oncologist every 2 months to get urine counts checked and her followups. We just had a visit yesterday and he says that Ella is doing well. She is due for her next MRI at the beginning of July. She was also be due for her spine xray, echocardiagram, and blood tests. I cannot believe that it is almost 2 years since Ella’s diagnosis. May 19th will be 2 years……
I am “friends” of facebook with many other mothers all over the country with children with neuroblastoma. Recently I came across a young boy with a very similar story. Same stage cancer, same risk group, same spot on spine. He was diagnosed at 1 month old. They removed most of tumor and left a portion on the spine…did the chemo and then monitored him….very much like Ella. One year later, the tumor started growing. They are now starting all over….he needs chemo again and then surgery. I am so scared this will happen to my Ella. What are the chances????
So, I talked to the oncologist about Ella’s remaining tumor. He explained to me that the hope for Ella is that her remaining tumor will turn into a “ganglioneuroma” which is a benign tumor. This tumor in itself usually does not cause any issues, but in some cases may start growing and affecting other organs, or could even turn into cancer at some point in her life. And this is why it is important to have the MRI’s done. He is comfortable with Ella getting annual MRI’s until she is 10 years old. But what then? THat’s my question….what then? we just hope that it doesn’t start to grow??? How will we know? ugh…..
He continues to feel that surgery is not needed right now. He believes there are too many risks in going in and removing the tumor. So, we wait…..we wait and see……
Doc says that neuroblastoma as well as ganglioneuromas are very unpredictable. There is really no way to know what will happen…..
Ella makes my life complete….I truly believe my reason for being here was to be her mommy and that is all I ever need for the rest of my life. I am truly amazed by her every day. I am so blessed……
July 2013 MRI and tests
Ella had her MRI on July 8th. Results came back as follows:
Impression: Stable size of right retroperitoneal mass with extension into neural foramen and to a minimal degree within the spinal canal. I do observe a degree of decreased post contrast enhancement of this lesion. No new lesions demonstrated.
Asymmetric renal function delayed on the right as compared to the left. This may relate to history of urinary tract infection and perhaps to the presence of a dilated urinary bladder on current evaluation.
So, basically the tumor is stable. Not much change from last time. It continues to be about the same size – 1.6×1.5×5.9cm. This is good…but I hate that tumor being in her….I hate it.
This has been a rough couple of months….Ella continues to get chronic bladder infections…it seems like we are at a different doctor every other day. Just recently she had a really bad bladder infection with a pseudomonas bacteria….this is some real serious bacteria that can cause a lot of damage if it is not treated. Ella had to be on cipro for 14 days. Cipro is not recommended for children because of the side effects that it causes….but luckily ella tolerated it fairly well….not perfectly, but fairly well…We just dropped off another sample of her urine today so we will see if it is completely gone….
Tonight we started prophalactic antibiotic Septra. She will take this every day from now on in hopes that it will prevent her from getting these infections. We tried this medication in the past but it was causing her to have sleep disturbances….so, we stopped it. Hopefully it will not happen again because she absolutely needs this stuff…I cannot stand these infections all the time,,,not to mention what kind of damage it must be doing to her She has had several renal ultrasounds done this past month and they came back normal, so there is no damage to her kidneys…thank GOD> Her doctor says that her bladder is the size of an adults….because of her neurogenic bowel and bladder she is not able to empty her bladder properly…we are not sure at this point how much control she actually has of her bladder….it is too early for her to tell us..so, the urine just sits in her bladder until it gets so full that it basically trickles out. This is what causes her infections.
We are working on the potty training, but unfortunately if Ella has issues feeling the urge to urinate than potty training isn’t going to go well….Doctors say to not push the potty training right now. So, I’m not.
XRAY of Ella’s spine was done during her MRI. Results are as follows: Gradual thoracolumbar scoliosis convex right measured at 7.8 degrees between the pedicles T4 and pedicles L5.
Impression: Mild thoracolumbar scoliosis.
So frustrating because the last time the xray showed scoliosis, the orthopedist said it was wrong. He did not believe Ella had scoliosis. But now again, it shows that she does. So, guess another trip to the orthopedist is needed. I will update on this…..
Other than all the medical issues, Ella is doing fantastic! She is so smart and so funny and so amazing….I’m blessed to be a stay at home mommy…this is my life and my purpose. I love spending every day with her and watching her grow….I stare at her in amazement on how I got so lucky to be her mom…
She is talking like crazy….so funny too…she tells me stories every night…she LOVES being in the pool…she doesn’t know how to swim yet, but she loves to float She loves watching peter pan, Cinderella, yo gabba gabba, mickey mouse, tom and jerry and chip and dale. She loves playdoh and sidewalk chalk. She loves her cousins nia and johnny and talks about them every day…luckily we only live 3 streets away from them! She loves her family….grandparents, aunts, uncles, cousins. She loves all animals and babies. She loves any kind of pasta, pickles and olives! and will drink milk all day if she could. She sleeps with 12 animals and 2 blankets at night…and she will count them to be sure everyone is in her crib and she must have the stars on the ceiling. She sleeps really well when she doesn’t have an infection…and she gives the BEST hugs in the world….
I love my ella…..
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Hello, I am Adam Rosen’s girlfriend. We got your daughters letter to him and I would just like to say we are praying that your daughter stays CANCER FREE, and lives a long, happy, healthy life. Her, Adam and all humans dealing with cancer are so strong. Tell Ella I said Adam WILL be a cancer survivor just like her and he’s looking forward to next years Runway to hope!
Thank you so much for the kind words to my Adam!