Mommys Blog

 

 

Ella had been getting unusually fussy just around her 6 month birthday.  Prior to this time, she had been the happiest baby you would have ever met.  Most people and doctors attributed this to teething or possibly some acid reflux.  So, we carried on with business as usual.  Then Ellas sleeping patterns changed.  She went from sleeping 8 hours a night, to 20 minutes at a time, waking up screaming.  She lost her voice at this time, which we attributed to her screaming all the time.  She also started making jerky movements.  Doctor sent us to the hospital in the end of March to determine if she had acid reflux and for testing for possible seizures.

We had a upper GI done which showed no acid reflux, however, doctors still believed she was exhibiting signs of this and still wanted to treat her as if she had it.  She also had an EEG done which showed something called “posterior slowing”, which meant there may be something neurological going on.  We were advised to follow up with a neurologist.

Follow up done and EEG repeated with same results.  Neurologist suspected a metabolic or genetic disorder and sent Ella for numerous blood tests as well as an MRI to rule out any abnormalities or lesions in the brain.  The doctor also diagnosed Ella as “hypotonic” (low muscle tone) and encouraged us to start physical therapy with her to try to regain her loss of tone.

After a couple weeks, Ella was not getting any better and in fact, she appeared to be losing control of her legs.  All blood tests were coming back normal as well as the scan of her brain.  We were at a loss.  She appeared to be in so much pain, but we just didn’t know what was wrong!  She was screaming for hours and hours.

Brian and i started noticing that Ella seemed to scream the most when she was laying on her back, in the car seat, being handled during diaper changes, and during activity.  We also started noticing that the movement in her legs was decreasing more and more, and the right leg was barely moving at all!

We made another appointment with the neurologist on May 17th and suggested that we get an MRI of Ella’s spine.  WE thought maybe she injured herself at some point or possibly had an impingement.  Doctor ordered the MRI and we were seen the next day.

MRI was done with contrast on May 18th.

Early morning on May 19th, the neurologist gave us the results.  Ella had a large tumor on her spine that wrapped around into her abdomen.  She was not sure if it was malignant.

And so our nightmare began…….

May 19th

Arrived at Arnold Palmer Hospital where we were told we were going to get a biopsy of this tumor.  Met with Dr. Pattisapu, pediatric neurosurgeon, who told us his plan to get the biopsy and informed us that oncology should probably be present just in case.

We then met Dr. Levy, pediatric oncologist, who told us that he was “pretty sure” this was neuroblastoma, a malignant cancer.  He tried to prepare us for the long road ahead and what steps we were going to have to take following this biopsy, but I do not think that Brian and I really heard half of what he was telling us. Needless to say, we were in complete shock and denial that this was actually happening.  You hear of childhood cancer, but not in a baby!  Ella was only 7 months old!  How could this happen?  So many questions go through your mind when you hear news like this.  What did I do wrong?  Did I eat something while I was pregnant?  Maybe while I was breastfeeding?  Could we have prevented this somehow?  Could we have found this earlier somehow?  Are they sure it’s cancer?  Maybe they are wrong.  Why would God do this to a child?  Why is God punishing us?  Why is God punishing her?

May 20th

Surgery performed in the morning of May 20th.  Dr. Pattisapu was planning on only doing a biopsy, however, once he started performing the procedure, he realized that some of the tumor was easily accessible and removed a portion off the spinal cord and adjacent muscle (laminoplasty).  He was unable to remove the lower portion and the part that wraps into the abdomen.  The tumor was sent for analysis.  They also placed a central line into Ella, also called a broviac, that descends into a vessel above the heart.  This would make it much easier to give her medications and to pull blood as needed without poking her everytime.  Ella did well during surgery, and only lost a minimal amount of blood.

We were moved to the Pediatric ICU floor.  Ella was very swollen after surgery and extrememly tired.  They continued to give her morphine to control her pain.  It was horrible seeing her go through this.  We had to keep reminding ourselves that we were doing the right thing and that Ella will never remember this.

We met with a large team of doctors from the oncology department and signed all the papers to start the chemotherapy as soon as possible.  This would reduce the size of the rest of the tumor.  This was a horrible moment for us…we had to put all of our trust and faith into these doctors who we did not know at all.  This was completely out of our hands.  We had no choice.  We had to start the chemo.

Ella had an MRI the following night to see how much of the tumor was gone.  We were then transferred to the 4th floor, Hematology and Oncology Ward.   Reality started to kick in.  Our daughter had cancer.

May 22nd

Ella was very tired and sleeping a lot.  She did not need the morphine anymore but was now taking tylenol with codeine every 6 hours to control her pain. She was also taking steroids for the inflammation from the surgery.

This is the day they started her chemotherapy.  It was a 3 day process.  They use two different medications during this round of treatment.  1 hour of Carboplatin and  one hour of Etoposide.  On top of that, she got benadryl or ativan every 3 hours and zofran every 8 hours to control nausea and vomiting.  She also received zantac every 4 hours to control acid and stomach upset.  Through all of this, Ella still nursed and was eating fairly well.

She tolerated her first day of chemo well.  No vomiting.  But you could definetly tell that she was not happy.  Her usual smile was not there.

We started to see little movements in her right leg and foot.  The most amazing sight I could ever imagine!

She had a CT scan done with contrast in the evening and had a slight reaction to the iodine.  She developed a rash on her face and chest that quickly came and quickly left.

May 23rd

2nd day of chemotherapy.  She received one hour of Etoposide.  She tolerated it well.  She continued to get all the anti-nausea medications that seemed to keep her comfortable for the most part.  She was sleeping well and nursing often. She enjoyed being held up against my chest.

She got a bone scan this day to check if the cancer had spread into any bones.  She had to be put under sedation for the procedure.  The scan results came out good.  It did not show the cancer spreading into any bones!!!  Thank God for this!

May 24th

3rd day of chemotherapy.  She received another one hour of Etoposide.

This day she had a bone marrow biospy done under sedation.  Brian decided to be present during the procedure which may not have been such a great idea after all.  He said it was horrible to see and was sick for the rest of the day.  They extract marrow out of her hip bones.  Luckily she did not feel anything.

Results of the bone marrow biopsy were good.  No cancer spread to her marrow.  Another reason to praise God!

Her foley catheter was removed.

She had a bad night.  Had a very hard time sleeping and appeared to be in pain.  She got morphine at 2am.

May 25th

Ella had her MIBG scan done this day.  MIBG (metaiodobenzylguanidine) is a substance that gathers in most neuroblostoma tumors.  Ella had to swallow a substance to protect her thyroid for 3 days prior to this test.  Then they injected iodine into her blood and scanned her.  The iodine is radioactive and is attracted to tumor in both bone and soft tissue.  She had to repeat this scan the following day as well.   Cancerous cells will appear as bright spots in the scan.

This test also came back normal.  There does not appear to be any cancer in her soft tissue!  Praise God!

She will have to continue to get the scans done on a regular basis to make sure that cancer does not appear in any spots.

HOME

Ella was released from the hospital on May 27th.    She was doing so well at home.  Her voice started to come back and she began to babble (a sound I was not sure I would ever hear again).  We still don’t really know why her voice disappeared for that time her tumor had grown.  The tumor was not compressing her vocal cord or any nerves in that area.  But it had to be related in some way, because now her voice was coming back!  She also started moving her legs a lot.  And even started putting some weight on them when I held her up!

The chemo definetly took a toll on her.  She was very tired but not sleeping well.   However, she started smiling again and I could see the “old Ella” coming back in my life:-)

She had to continue to take the zantac, some steroids and antibiotics to prevent pneumonia while at home.

June 1

Ella started running a low grade fever overnight.  Luckily she was due to go to the hospital for lab work anyway. They checked her total blood count, white blood cells, red blood cells, hemoglobin, platelets and what they call her ANC.  On this day, Ella’s blood counts were very low and she required a transfusion.  Usually they are able to do this on an outpatient basis, but since Ella was running a fever, they admitted her to the hospital to get IV fluids and antibiotics.  Plus she was having horrible diarrhea :-(

We ended up staying in the hospital for 4 days.  She was discharged home on June 4th.

We returned to the hospital on June 7th for more bloodwork.  This time her blood count had increased enough to give us the ok to come back on June 10th for her 2nd round of chemotherapy.

2nd round

On June 10th, we were scheduled to start Ella’s 2nd round of chemo, however, her blood count was still too low to receive it, so we were sent home for the weekend.  We started to see improvements in Ella physically and emotionally everyday.  She was so much more happy.  She started smiling again and laughing and seemed very content.  Unfortunately, her good sleeping patterns never returned :-(

But everyday she had more movement in her legs.  She was now able to take her right foot and get it in her mouth (something that she used to be able to do and then stopped).  We just knew that the tumor was shrinking!  It was a miracle right in front of our eyes!

June 15th, we returned to the hospital for her 2nd round of chemotherapy.  She was admitted and started the drugs on June 16th.  This time there were 3 different drugs.  15 minutes of Doxurubicin, 1 hour of Cyclophosphamide and 1 hour of Carboplatin.  All of this was done in one day.

She was also given all the anti-nausea medications during her treatment to help prevent throwing up.  She tolerated the drugs well, however was irritable and tired:-(  And still unable to sleep well.

We were discharged home the following day, June 17th.

Results of tests/Prognosis

Biopsy of the tumor came back as suspected.  Neuroblastoma.

MYCN amplification-This is a biological marker that if amplified may determine advanced stage of neuroblastoma.  Ella’s MYCN was NOT amplified which gives her a good prognosis.

LOH-Loss of heterozygosity-this looks at the gene itself for specific mutation.  If this is present it could signify a poor prognosis.  So far, Ella’s tests do not show LOH, which gives her a good prognosis.

DNA index-a useful test that correlates with response to therapy.  Ella’s test was in a favorable range for a good response from chemotherapy.

All of these are relationships that have been made since the discovery of neuroblastoma, but they are not proven until the cancers response to therapy is actualized.

Ella is diagnosed with STAGE 3 neuroblastoma.

Stage 3 means that her tumor has crossed the midline and/or is present in the lymphatic system, and/or is showing distal distribution in the body in several locations.

Ella is part of a clinical trial at the hospital.  The purpose of this is to determine if the same outcome of therapy can be achieved in fewer courses of chemotherapy as the therapy itself presents risk that at times can outweigh the problem being treated.

Therapies

Today Ella was seen by a social worker at Early Steps, a family centered early intervention system that serves infants and toddlers from birth to 3 years that have significant delays or an established condition that may result in a delay.  I am hoping that Ella will qualify for this service because our health insurance does not cover any therapy expenses.

Since Ella’s tumor was attached to the muscle adjacent to the spine, this prevented her from reaching certain milestones such as rolling over and sitting up.  She is trying to do these things now but needs a lot of assistance.  I am also still worried about her right leg and foot and wonder if she will be able to regain complete mobility and use of it.  I also worry about any future problems that may arise from her spine surgery and hope that she does not develop any kind of scoliosis.

June 23rd

Went in today to get Ella’s blood work and thought that she would need a transfusion, but her blood count was actually pretty good, no need for a transfusion today:-)  We will be going back on Monday to check again!

Ella has been throwing up this past week.  Doctors say typically the nauseau and vominting only lasts for 72 hours following chemotherapy, but she is certainly not feeling up to par.  Hopefully this will pass soon!

June 27th

Went to Arnold Palmer today to get blood checked.  Unfortunately, Ella’s blood count was extremely low :-(   Her ANC (absolute neutrophil count) was only 35.  For a healthy child, this should be over 1800.  Poor baby…..She needed a good amount of red blood.  This will help bring up her hemoglobin count which was also very low.

She appears in good spirits tonight though.  We go back later this week to get checked again.  In the meantime we will have to avoid anything and everything that may put her at risk for infection….

June 30

Ella went to the hospital today for blood work.  Her counts have gone up.  Her total ANC is now 195!  However, her platelets continue to drop.  Hopefully over the next couple days they will start to replenish themselves.  We go back early next week to check again and then Thursday she gets an MRI to see how much this tumor has shrunk!!!!!

July 5

Another afternoon spent at the hospital getting blood work.  Her counts are certainly on the rise.  White blood count still low, but better.  Platelets actually are high because her body is overcompensating for the loss of them.

ANC is 858.  yah!!!!

She is doing so good.  This past week she has learned how to wave and it sure sounds like she is saying “MAMA”.  She can now roll over and is trying very hard to sit up!!!!!

July 7

Ella had her MRI this morning.  They put her under general anesthesia.  :-(   Very difficult to see them put her to sleep.  She did fine during the scan.  They took pictures of her entire spine as well as her abdomen so the scan took about an hour and a half.  She was very grumpy when she was waking up from the scan and very hungry since she couldn’t eat after midnight :-(

I hope to hear from the doctor today, but am not sure if that will happen!  I will keep everyone posted!

July 8

We went to the hospital today to meet with the oncologist about Ella’s MRI results.  Her tumor has shrunk 66% after the 2 rounds of chemotherapy.  There is also still some tumor left on her spinal column that they could not get from the surgery, however, there is no tumor impinging or pressing on her spinal cord itself anymore.  The majority of the tumor that is left is in her abdomen.

Considering the favorable response to therapy, and the tumors biology, the protocol at this point is to take a “wait and see” approach.  This is good news as it is hoped that the cancer will mature into a nonmalignant mass.  The next step is to get another MIBG scan to make sure that the cancer has not metastasized anywhere else in the body.  Hopefully during the MIBG scan, she will be able to get the broviac (central line) removed.  Which means she can finallly get in a bathtub/pool :-)

In 3 months, we repeat the MRI and measurements of the tumor will be taken again.  We take it from there!

Surgery

Some people have  been asking why Ella is not having surgery to remove the rest of her tumor.

At this point, it is too risky to go into her abdomen to remove it.  The hope is that it will continue to shrink, or mature into a benign tumor.  We will be monitoring constantly.  If the the tumor starts to grow again, then surgery will most likely be an option.

July 15

Ella is becoming very active and has recently learned how to roll in both directions!  She now rolls from one side of the room to the other :-)

Sometime last night, she either pulled on her broviac or it snagged when she was rolling and it started to bleed ;-(  WE were sure we would have to take her to the emergency room.  We called the oncologist and he said if the bleeding stopped on its own, then we could probably wait till the morning, as so the bleeding did stop, thank God, and I took her in this morning.  It appears that it was tugged somehow and irritated the skin, causing it to bleed.  She is ok though.  They went ahead and did blood work and her blood counts are still low.  White blood is 3.6, so she is still very susceptible to illnesses.

Upcoming week

Next week is going to be hectic.  On Monday, Ella is scheduled for pre dosing for her MIBG scan.  She gets an oral medication to prevent damage to her thyroid as well as an injection of radioactive material in preperation for her test.  Following this, she gets an audiogram since chemo can damage her hearing.

On Tuesday, she gets the oral medication and injection again.

Wednesday is her MIBG scan.  She will get general anesthesia for this.  So, no eating after midnight :-(

Thursday, she will have to be scanned again for the MIBG.  This test is done over 4 days.

Hopefully we will also be meeting with the doctor to discuss removing her broviac.

The following Monday, she is scheduled for an echocardiagram.  (Chemo can also damage the heart muscle)

July 20-21

Ella had her MIBG scans on July 20 and July 21.  This is actually a 4 day test.  She went on the 18th for her SSKI, which is a medication she has to take to protect her thyroid during the test.  She went back on July 19th for another dose of the SSKI and an injection of radioactive material.  The 20th and 21st, she took another dose of the SSKI(which by the way is horrible and makes her throw up) and she was in the scan under light sedation for several hours.

She woke up during the first scan, but we were able to get her back to sleep to complete the test.  She did well the 2nd time.  She was unable to eat for 6 hours prior to the test, so needless to say, she was very hungry.

Hopefully, we will get the test results back tomorrow, if not, then by Monday.  This test will tell us if there is any ACTIVE neuroblastoma cells right now, after going through the 2 rounds of chemo.

TESTS

Friday 07/22/11, we went in for an echocardiogram.  Ella did amazing!  She tolerated the procedure with NO problem :-)

Afterwards, we went to the clinic for her regular blood work.  After giving blood and having her broviac flushed, it then began to leak.  They say sometimes the broviac can just all of a sudden stop working :-(   So, surgery was called and they were able to come to the clinic and remove it today.  I always was under the impression that she would be put under anasthesia for the removal, however, since she had already eaten during the day, they were unable to put her under.  They gave her a local anasthetic (shots) and pulled out the line.  It looked to be about 10-12 inches long!  I cannot believe that entire thing was in my little baby.  She screamed the whole time, but it was quick and she got over it fairly fast :-)

We are happy to have the broviac out because now we can give her baths and hopefully eventually be able to put her in the pool!  Our fear though is if she needs any more chemo, they will have to put it back in :-0

MIBG RESULTS

After a very long week of testing, Ella received her results from MIBG on Monday 07/25/11.

Impression:

1.  Striking interval reduction in MIBG activity in lower right paraspinal mass, compared to staging MIBG study of 05/25/11, with mild activity now present consistent with remnant disease.

2.  Likely physiologic bilateral adrenal activity, as is commonly observed.

3.  Mild but curious focal tracer activity is present in the posteromedial right upper hemithorax, but unfortunately is not within the field of view of recent MRI studies.  Cross-sectional imaging correlation, CT or MRI, is likely necessary to exclude an additional site of disease.

so, in other words, the cancer is still active but is not growing right now.  They also found a spot in the chest that they were unsure of, so Ella had to endure yet another CT scan to get a better picture.  And now that the broviac has been removed, they will have to poke her several times to get a vein for the contrast.   (Last time it took several nurses and hours to get a vein)  She also had a reaction to the contrast last time, so she will have to take 3 doses of steroids the night before as well as benedryl to counteract any reactions.

CT scan completed on Monday 07/26/11.  They were able to find a vein in her right foot.

CT SCAN

GOOD NEWS!  The CT scan did not show any tumor in the chest.  It must have been a shadow that showed up on the MIBG scan!  This is really good news!

There is nothing we do at this moment but sit, wait and see what this tumor does inside of her.  We go back to the oncologist next month for a checkup.

Wait Wait Wait

Ella’s fundraiser 08/07/11

Ella’s fundraiser at Saint John Vianney on 08/07/11 was a HUGE success!  It was amazing to see so many people come together in one place for one single purpose….to support Ella.  There was over 800 people that came!  Way more than we expected…especially since the gym really only accomodates 400!!!!

Great raffle prizes were won!  Everyone was soooo friendly….Kids had a good time with Elmo, Mr. Richards, the firemen, and clowns with face paints!  I couldn’t imagine it going any better!

Pictures are posted on Ella fights back facebook page.  If you are not a fan, please go on….many updates are put on there as well.

A SPECIAL thank you to the mommy group moms that put all of this together.  These are women that I had never met.  They fell in love with Ella and her story and wanted to do something.  We never imagined that this would be such a huge success.  I owe sooo much to these ladies!  They are wonderful women that will always have a special place in my heart as well as Ella’s.

Therapy

Ella started her physical therapy today.  She did really well.  The therapist said that she is functioning at about 6 months.  But she is certainly trying to catch up.  She said that her right side is definetly weaker than her left, which doesn’t surprise me since her tumor is on that side.  We are to be working on putting weight on the right side, and putting her over a pillow on her knees in the position for crawling.

I’m so excited to see Ella advance now that she is not in so much pain.

She only qualified for 1 hour of physical therapy a week, but I will take whatever I can get!

Brians Speech at Fundraiser

When my wife and I were told that Ella had cancer, time stopped.  As it would with any new parents hearing this news, a single sentence all but destroyed us.

I was angry.  And I’m ashamed to admit it but my anger was directed at GOD.  It took the gentle words of encouragement from a loved one to remind us what we knew in our hearts to be true.  GOD is in control.  And he is on our side.

And through this whole process, he has made his presence known, from the support and encouragement of family, friends, and even strangers.

Today, this event is evidence of Gods intervention in our lives and His love for Ella.

Philipians 4:8-9 reads:

Finally brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praise worthy-think about such things.  Whatever you have learned or received or heard from me, or seen in me-put into practice.  And the God of peace will be with you.

Everyone involved in making this event a reality have aced this lesson, and we thank you.

Words fail in expressing that gratitude my family and I feel towards everyone involved with Ella’s recovery and please know that even the smallest effort has not gone unnoticed.

We are happy to report that Ella has been doing great.  If you would like updates, visit her website, Ellafightsback.com

It is our hope that whatever your involvement has been in Ella’s fight to beat her illness you would take with you one thing.

Don’t wait for one of lifes major events to stop time for you.  Every now and then stop the clock in your own busy lives….look around you…..and remember that when all of lifes distractions and details fade away….all we are left with is each other.

I would like to end with a reading from Isaiah 40:28-31

Do you not know?  Have you not heard?  The Lord is the everlasting God, the creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Thank you all again for coming and supporting our baby Ella.

SEPTEMBER

Ella is doing so well :-)   She went for her monthly checkup on August 29th and again on September 26. The urine test in August came out good.  The markers that are indicative of cancer in the urine continued to drop .  The urine test in September however did show a slight increase.  According to the doctor, it was not a significant increase and we should not worry.  So easy for him to say.  This will certainly keep us worrying until her next urine test at the end of this month.

Ella continues to get physical therapy once a week and it progresses well :-)   She has recently started to crawl. And just last week, she started trying to pull up on furniture!  She continues to show more weakness on her right side.

Ella goes back at the end of October for her MRI scan and MIBG scans.  We are anxious to get these over with and see the results.  Hopefully her tumor has not grown.  It is so hard to know that the tumor is sitting in her and could potentially start growing any time. Right now, the doctors do not think we need to go in and remove this tumor.  Again, they hope that in time the tumor will mature into a benign tumor.  It is hard to imagine this happening !

The hardest part is waiting the 3 months to get her scans.  But then when it is time for the scans, I hate the prepping for it.  She is unable to eat or drink anything 6 hours prior to test.  Now that her broviac has been removed, they will have to find a vein to start her ivs and medicines during tests, and she will have to be put to sleep :-(   I do not want to revisit the horrible experience of trying to find a vein. (they had to poke her head and neck before)   I pray that now that she is bigger, the veins will be easier to find!

Ella will be celebrating her first birthday on October 15th.  We are having a family party and the theme is owls :-)   Ella is my “little bird”…….

Hard to believe a year has gone by since that little angel changed my life.  She is the BEST thing that has ever happened to me.  I just love her so much.

October 26th, 2011

Ella had her MRI last week.  Results were a surprise!  Her tumor has actually shrunk a little bit since 3 months ago during her last MRI.  This was not really expected.  We were HOPING that the tumor would not grow, but not expecting it to shrink even more since she has not received chemo in quite some time now.

Last measurements of mass were 2.3×1.4.  New measurements are 1.8×1.0.

This is so awesome!  Prayers are helping.

This week Ella had her MIBG scans.  We will get the results of these tests on Monday.

Ella had her 1st birthday party a couple weeks ago and it was so fun!  The theme was owls and birds, and we actually had a real owl come to the party!  What a wonderul day it was!  I couldn’t ask for anything more!

I have added some new photos of Ella during her one year pictures.  They are on the first page at the bottom of Ella’s story.  :-)   She is getting so big.  I just love her so much….more than life itself!

November 2011

Ella had her MIBG scans at the end of October, beginning of November.   They attempted to get an iv started in her arm, but unfortunately her veins collapsed :-(   However, they were able to get an iv in her foot fairly easy, and Ella tolerated it well :-)   She did fine during the scans.

Went to oncologist on Monday, November 7th for her monthly check and urine test and to get the results of mibg scans.  This was the best day we have had this year!  Dr. Levy told us that the MIBG scan did not show any active cancer cells in Ella’s body right now!!!!   He also said that the tumor, which was once the size of a mans fist, is now the size of a walnut!!!!  HOLY COW!  This tumor is injured and continues to die away!!!!  Even if the tumor does not shrink completely, I would be fine with that….as long as there is no cancer in it!

I am so so so happy….but have to admit that I am waiting for the bad news now:-(  I just hope that the scans were right.  I hope there was not a mistake.  We were told at the very beginning of all this, that we would be getting good news, and then the bad news would come!  I’m waiting………

But for now….we are REJOICING!  Ella is so strong!

We still go back every month for checkups and urine tests…and her next scans are in 3 months.  I hope and pray that those scans tell us the same thing this scan did.  Every time that Ella gets scanned, for the next 18 years, I will fear that that stupid tumor started growing :-(

March 2012

I have not posted anything in quite some time.  I apologize for not updating all of Ella’s followers with information as it comes.  It’s amazing how little time I have for myself with a 16 month old :-)   But I am loving every moment of it!

Ella had her last MRI on January 27th, 2012.  Her tumor has not changed since the last MRI done last year.  It continues to be about the size of a walnut.  It is not pushing on her spine or kidney.  It continues to have no active cancer cells growing in it.  The oncologist informed us that he was not sure if Ella needed to continue to have MIBG scans done.  He believes that the MRI’s would be enough to see if the tumor starts to grow.  This worries me very much.  I worry because the MIBG would scan her entire body, not just the tumor site.  This would show if there were any other places in her body that may contain cancer cells.  The doctor says it is very rare for neuroblastoma to start to metastasize or grow in a spot that was not the original location.  He seems to think this is not necessary at this time.  I sure hope he is right.  I have seen several children that have neuroblastoma have it come back in a different location.

Ella is doing well.  She took a few steps on her own February 13th.  We thought for sure after that she would be all of the place.  However, she is not.  She continues to take a couple steps here and there, and needs a lot of encouragment to do so.  She really enjoys to walk, as long as I am holding her hands.

She is still just the happiest baby.  She loves going to Kindermusic classes every week and having playdates with her friends.  I love every moment that I have with her :-)

Her billboards have recently been taken down.  I knew that this was going to happen at some point, and we were so honored that they were put up, but it was so sad to drive down the road and not see her billboard.  I fear that people will stop praying for my dear Ella, assuming that now that she is cancer free, she does not need prayers.  This is sooooo not true.  She truly needs all the prayers that she can get.  Every day I read about a child who was “cured” from cancer, only to have it reappear, and to always come back with a vengeance.  I think about this EVERY SINGLE DAY.  That is all that I think about.  Every time Ella has a bad night, cries a little more than usual, makes a strange sound, or jumps a little, anything that is just a little bit out of the ordinary, I worry….I worry that it is cancer.  I worry that I will not catch it in time.  i worry that it will come back and show no symptoms.  I worry that it will be too late.

I guess I need to come to the realization that this will be my life.  I will always always worry about Ella as long as I am alive.  So, please, do not stop praying for her.  Pray that she stays healthy.  She has been through so much.  More than many many adults.  I just know that Ella is going to make a difference in this world.

April 2012

Yesterday was the curesearch walk for childhood cancer.  We had a great turnout with 32 walkers supporting Ella.  What a great team!  Ella was joined by so many other children who have been battling all different types of cancer.  It was an emotional event that encourages us to continue to pray for a cure and do whatever we can to raise awareness and funds for research.  May God bless all the children represented at this event.

Ella is scheduled for her next MRI at the end of this month.  However, we are having a few schedule conflicts, so it may be moved back a little bit.  3 months have gone by way too fast.  I am very anxious to see what is going on with that stupid tumor!

May 2012

Ella had her MRI this past Friday, April 27th.  I hate hate hate when it is time for her MRI.  On the other hand, I am always anxious when it is getting close, because I want to know what is going on in her body.

Results Monday were that the tumor is stable and unchanged.

“Right paraspinal mass extending from L1 to L4.  It extends into the neural foramen at l1-l2 and l2-l3.  The lengthiest trasverse dimension of this mass is at the l2-l3 disc space where its extent is into the spinal canal and transverse dimension is 1.9cm.  Total length of the tumor is 4.9 cm, and AP dimension is 1.4 cm.  There is enhancing tissue seen extending into the spinal canal at the two levels without mass effect on the thecal sac.  The mass runs along the posterior margin of the right psoas muscle.  I believe there is a little bit of enhancing extradural soft tissue on the left side at l3-l4 which was present previously.  Overall, today’s findings have not significantly changed.  There is no further extent and there is not a new mass.”

So, it appears that there is no change.  And as long as the remaining tumor is not affecting her neurolically or physically, there is no need to remove it.  Our next MRI is scheduled in July when she was also have a spinal xray to check for scoliosis, as well as her hearing test.

Currently, Ella is having severe constipation issues that hopefully will be addressed with a specialist we are seeing today. We are unsure if these issues are related to the previous large tumor Ella had.  It is ”possible” that the location of the tumor may have damaged or affected a nerve that helps control Ella’s intenstines.  We will get better answers after seeing the specialist.

Also, Ella is starting to exhibit some sensorty issues that we will also be getting addressed with Occupational Therapy.  Again, I am unsure if this is related to her neuroblastoma.  They say that when there is any disease of the spine, it is possible that sensation may be affected.

May

Ella has had a difficult week and I thought i would update her blog.  She has been getting recurrent bladder infections.  We were told last week that her urine culture had come back positive for bacteria and that we needed to treat her again with an antibiotic.  She was just treated for one last month.  She does not show the most obvious sign for a bladder infection which is fever, but she does pull on her diaper and cry when she urinates.

Ella has always had bad constipation concerns.  When she was an infant, she would go 10 days without pooping.  The doctors said that was ok since she was breastfed.  But then we started whole milk and solids and the constipation continued.  Throughout her cancer treatment, she would experience diarrhea from the medications and chemo….and then as soon as treatment ended, she would go back to being constipated.  There has never been a norm for her.

We struggle to find a happy medium for Ella when it comes to these issues.  She is on an adult dose of Miralax every day.  I try to enforce high fiber veggies and fuits, but it’s hard to do with an 18 month old.  If she goes longer than 2 days, I usually end up giving her an enema which typically will produce a very very hard poop which has to be formed and pulled out causing her to bleed :-(   This is such a horrible experience for all of us….  There is no way that this poop would come out by itself…it is like clay and is too big for her to pass.

After the last horrible experience of this, we decided to take her to a GI doctor.  He scheduled a barium enema to be done.  She had this done on May 3rd, as well as having a renal ultrasound to determine if there were any anatomical reasons for her recurrent bladder infections.  Both of these tests came back normal.  However, the barium constipated Ella again.  So, several more days of not pooping. :-(   Her poor tummy was starting to get distended and for 3 nights she was completely unable to sleep.  She screamed all night in pain.  A CT scan was scheduled for May 10th to check for an obstruction.  In the meantime, i was giving Ella laxatives to try to give her relief.  The night before the CT scan, she had a huge blowout of diarrhea and i believe de impacted herself.  CT scan came back normal.

Ella is still in discomfort, however, she seems a little better than she was, as now she continues to have bowel movements and is able to sleep.  However, her poop is very acidic because of the length of time it takes her to go, that it actually burns her skin and causes blisters.  This is causing her to be in a lot of pain :-(

She is now taking her antibiotic for the bladder infection as well as an increased dose of miralax, lactulose, and culterelle.  Doctor has prescribed Baileys Butt Creme for her rash and Bentyl for intestinal spasms.

In the next few months, Ella will start seeing a urologist for the recurrent bladder infections.  They will be able to perform a test to see if there was nerve damage done when the tumor was compressing her spinal cord that may have caused the constipation and infections. These tests sound painful to be done, however, we need to know if there is something we can do for her.

I will keep this updated with any testing she has done.

MRI SCAN/XRAY JULY 2012

Ella had her MRI and XRAY last Friday July 27th.  Today we went to see Dr. Levy.  He says that the tumor has not changed…meaning it hasn’t grown or shrunk.  It continues to not compress her spinal cord and is still benign.  The xray however did show mild scoliosis so we will now start to be followed by an orhthopedic surgeon.  Worst case scenario, she will have to wear a brace to try to correct the scoliosis.

She is scheduled for her audiology test in a couple weeks to make sure that the chemotherapy did not damage her hearing.

Ella has been experiencing what we think are night terrors.  It has been going on for about 6 weeks now.  Dr. Levy is going to talk to one of the doctors in the hospital to see if we need to get a sleep study done.  Other than that, Ella is doing great. She is really starting to talk a lot now, she loves to sing.   and we took some “signing” classes over the summer and she was at the top of the class….she can sign over 10 signs already!  We also started swimming lessons and she LOVES being in the pool.

We are anxious for it to cool off here in Florida so that we can take her to Disney.

Please continue to pray for Ella…she is so dear to my heart..no child should ever ever get cancer…

AUGUST 2012

Ella passed her hearing test with flying colors.  She has excellent hearing and there appears to be no damage done from the chemotherapy.

Her night terrors have subsided and she is not sleeping well…

We had our consultation with the orthopedist last week and she has a 13 degree angle of scoliosis at this time.  He recommended some more physical therapy to help strenghten her back muscles and to increase her tone in her right leg.  We go back in 6 months for another xray to check the scoliosis degree.  No bracing is needed at this time.

Ella had a test done last week called a VCUG.  This test helps determine the cause of her frequent urinary tract infections.  They inserted a cathetaer into her bladder and filled it up with a contrast and then xrayed her while she attemted to eliminate it.  The test showed that she has no kidney reflux (no urine backing up into the kidneys), however it did indicate that she holds in her urine.  This is most likely due to a neurogenic bladder which is what we suspected.  There must be some nerve damage around the site of where the tumor was on her spine.  We follow up with her nephrologist in a few weeks and will then see what we need to do from here.

Ella is doing amazing!  She is talking in sentences now…although I have no clue what she is saying.  lol.  We will be starting kindermusic again in September as well as the advanced signing class :-)   She loves to dance, sing, and draw.  She amazes me every single day………

OCTOBER MRI 2012

Ella had her 3 month MRI done on October 30th, 2012.  Results show that the tumor is stable and shows no signs of growth.  Since we have now been doing 3 month scans for over a year, the next step is to go to 6 month scans.  I know this is a good sign, but it scares me very much to wait a whole 6 months in between scans.  However, Dr. Levy promised me that if he felt there was a reason to do so, he would get her a scan sooner.

Ella continues to have some difficutly with her sleeping.  I do believe at this point she is now having nightmares vs night terrors.  She cries out in her sleep, “no”, but in most cases, can put herself back to sleep.

She recently started receiving physical therapy through the Early Steps program.  She has only had one session so far.  The therapist did believe that Ella would benefit from an orthopedic insert in her shoe to help correct her pronating stance.  She also recommended that she wear supportive shoes.

Ella is doing very well.  She is talking talking talking….loves to sing and dance.  She was a georgia bulldog cheerleader for halloween this year.  She is super shy.  Usually when she is around other people, she will not speak a word.  Then, as soon as she leaves, she talks up a storm.

We are in the fall session of kindermusic and loving it.  I also think it is good for her sociallly to be around the other children. We are definetly signing up for the spring semester as well.

Ella is so precious.  She cracks me up every day…She has a very funny sense of humor and loves to make me laugh.  She loves loves loves her cousins, Nia and Johnny, and gets soooo excited when she gets to spend time with them.  She is not shy when it comes to them.

We just recently started giving Ella prophalactic antibiotoc, SEPTRA, to help prevent her from getting the bladder infections.  I am not as strict on giving her the medication as I should be, because she screams so bad when I do give it to her.  I feel like I am torturing the poor girl.  But I know that I need to start being more proactive with this….Giving her the medication is better than her getting another infection.

I am a constant worrier….and probably always will be when it comes to ELLA>  But I do believe it is my worrying that got her diagnosed as quickly as I did.  So, worrying I will continue to do.

January 2013

Ella had her 3 month MRI mid January.  The results continue to show that the remaining tumor is stable….meaning that it is not growing or shrinking.  It is approximatly 5.0 cm in length which is bigger than I thought.  I guess that is about the size of a walnut…but I measured it out and put it up next to Ella’s belly and it looks sooo big :-(   I hate knowing that that thing is just sitting inside her…I HATE IT.

Since the scans showed no significant change, Ella is now able to get her MRI’s done every 6 months.  So, next one is not until June.  Scans continued to show a distended bladder and colon.  She continues to have some bowel and bladder issues, however she has not had a bladder infection in some time now.  She is showing some interest in potty training, so I’m hoping that will help her overcome some issues as well.

Ella is doing fantastic.  At her 2 year checkup, she was in the 50th percentile for weight and 75th percentile for height.  Brian is pretty tall, so hopefully Ella will be a little taller than me :-)   Doctor said that she is talking at a 3 1/2 year old level :-)   She talks up a storm :-)   And I understand almost everything she says.  She is soooo funny and loves to make me laugh.

We are signed up for another kindermusic session that started last week.

We are going to be moving to a new house sometime in March.  Not moving far…just about 15 miles away…to be closer to the family :-)   We are hoping to get a house with a nice yard since Ella loves spending time outside :-)

Please continue to pray for my sweet girl..

March 2013

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……

3

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…..soooocute

cancer survivor

December 2013

Ella had her MRI on December 18th.  It had been 6 months since her last scan and I was anxious to get this done because she had been complaining intermittently about pains in her right hip, knee and toes.  Scans results are as follows:  Any interval change in the right paraspinal mass extending into the spinal canal and partially encircling the thecal sac is that of perhaps slight enlargement since the study of July 8, 2013.  Currently measures 6.0 x 2.0 x 1.5cm.  There is marked distention of the urinary bladder, excessive fecal material is present in the descending colon and rectum.  Decreasing bilateral hydronephrosis is present.

So, my understanding of this tumor that still sits inside Ella’s little body was that it would not be growing.  And I believe that is also what the doctors thought to.  However, the thought is that maybe it grew a little because Ella grew…and as she grew over the past 6 months, the tumor stretched.  At least this is what we are hoping….Oncologist was concerned enough to move Ella’s next MRI up to 3 months instead of 6 months to reevaluate.  Ugh…..

He did talk about possible complications that may arise as Ella grows.  Their is an uncertainty about what exactly this tumor will do.  It is possible that it will compress the 2 nerves that it is sitting on that goes down her right leg.  So, she may have significant nerve pain in the near future.  Last month she was very uncomfortable with pain in her leg….doc said it was probably this exact reason.  I know personally how painful nerve pain can be from an injury I sustained in my neck years ago,,,so I can imagine the pain Ella was in and may be in from this.  So, this is something we are to be watching for.

Surgery is not possible on this remaining tumor.  They would run the risk of severing the nerves it sits on, thus leaving her with no feeling or possible movement in her legs.

The next concern we have is Ella’s bowels and bladder.  This has always been a concern for us…but as she gets older and starts to become the age for potty training, this is so frustrating….According to her MRI’s, her bladder is constantly enlarged…and she is always constipated.  It appears that these things are just not working right.  Now, she has not had any bladder infections since July, and since she’s been on the SEPTRA daily, so this is really good.  But her risk for infection is still so high.  Her urine and stool cannot just sit in her.  After Christmas, I am going to start looking for a new urologist/nephrologist that may be able to ease my concerns.

We also met with the long term nurse at the hospital.  She will also be following ella.  She went over all the possible complications that may arise in Ella’s life directly caused by her chemotherapy treatment.  These include but are not limited to:

Psychosocial disorders,

limitations in healthcare and insurance coverage secondary to cancer diagnoses,

dental abnormalities

gonadal dysfunctions, delayed puberty premature menopause, and infertility

secondary cancer, leukemia, myelodysplasia

Peripheal sensory neuropathy or nerve damage

Renal toxicity

dylipidemia

Urinary tract toxicities and bladder cancers

cardiac toxicity

neurogenic bladder

neurogenic bowels

All of the possible/potential late effects are caused by the medications  Carboplatin, Cyclophosphamide, Etoposide, and Doxorubicin.  ALL of which Ella had to have during her chemotherapy treatments.

I’m a nervous mommy….My life, my thoughts, my world is worry…..

cute with sunxmas card

 

APRIL 2014

Ella had her 3 month MRI last week and results showed that the tumor slightly decreased in size!  This is fantastic news.  What we were hoping for…well, not really.  I would hope that the tumor would just disappear but seems like that is not going to happen….I’ll take what I can get.

The hope for Ella’s existing tumor is for it to become something called a ganglioneuroma.  This is a benign tumor.  However, this type of tumor can still grow.  And I was informed today that if a ganglio neuroma starts to grow, and can be very aggressive and can metastasize to organs and bones just like cancer.  You cannot perform chemo on this type of tumor, only thing that can be done would be to remove it, however, if it’s in a place like Ella’s, it would be difficult to remove without risking lower body paralysis.  This is why Ella’s tumor is watched closely.  So that if it does start growing, they can attempt to remove it before it gets too big.  What a scary thought….it’s like a time bomb….really.  Will there ever be a day that I can stop worrying????

MRI continues to show that Ella’s bladder is very distended, which means her bladder is retaining urine and not emptying when needed.  MRI also showed trace amounts of urine in her left kidney…which is never a good thing 😦  Just tells us that her bladder is getting so full that is backs up a little into her kidney.  MRI also showed excessive fecal matter in her colon.  This surprises me everytime, because Ella poops ALL THE TIME.  Apparantly, she is leaking, and not actually pooping as she should be.  Next week we are seeing the urologist and GI doc to see what else we can do.  Doc told us that our next option may end up being daily cathaterizations.  I’m hoping and praying that this is not the case.  I just don’t think I would be able to handle doing that to her every day.  It’s not like she has no feeling down there.  It hurts.  I just can’t do it to her.  I’m feeling so anxious and sick over just the thought….  The doc reminded me that we are so lucky to have Ella here…so lucky that she is walking like she is, so lucky to have caught her cancer before it had metastasized any further…. I have to keep reminding myself that these of course are such positive things, and Ella has come so far….. I just hate to see her have to go through anymore.  I hate it.

The worst pain in the world is watching your child suffer…..and feeling completely helpless.  Knowing that there is nothing you can do to take that pain away….I’m really not sure why God chose me to be Ella’s mother…I’m not as strong as I wish I was.  I wish I didn’t worry so much….I wish I didn’t cry every night thinking of everything and anything that COULD happen to her….I just love her with all my being, all my heart and all my soul.  My life has never been more complete since Ella has entered it…I just hope that I’m strong enough…

Ella’s next MRI is scheduled for 4 months.

MAY 19TH – THE ANNIVERSARY

3 years ago today…a day I will never forget…worst day of my life.
Ella had her MRI the day before…I knew something was wrong..I had a bad feeling when I left that building. There was a hush in the air..all the staff were acting different. Just didn’t feel quite right.
Brian, myself and Ella (7 mos old) got up early to head to the doctors for the results. We knew something wasn’t right when they told us we didn’t have to pay for this visit. I’ll never forget it…Brian looked over at me and said “they must be giving us bad news, who doesn’t charge for an appointment”.
Doc came in and said it didn’t look good. They found a tumor. She didn’t know what it was but it was big. And we needed to go to the hospital. I remember looking down at little Ella, at this point not being able to move her legs, not being able to use her voice, just staring at me….I just wanted to die right there….how could this be???? In disbelief I drove her home, trying to maintain my composure, put her down for a nap and just collapsed…
A few hours later after our families arrived for support, we drove her to the hospital. In my mind I just kept thinking, this must be a benign tumor that they can just remove and everything will be fine…
Once settled in a room, the first doctor to come was a neurosurgeon…Dr. Pattissapu. He told us he was going to try to remove as much of this tumor as possible and that it had to be done the very next day . He was not sure she would ever walk, due to the compression on her spine. But he knew for sure that she would be in less pain…
The next doc was an oncologist…Dr. Levy. He started talking about types of tumors and what he thinks Ella’s resembles. He tells me that by the look of the MRI, it looks like neuroblastoma. I thought, ok, whatever that is…never heard of it. Just glad he didn’t say leukemia, or lymphoma, or some kind of cancer.
Then he mentioned chemotherapy and I thought, what? Wait…what are u talking about? Why? What is neuroblastoma? Is that cancer???
Oh yes…that’s cancer. It’s a very aggressive cancer…
From there it was doctor after doctor after doctor. You have to start keeping a notebook on who is who and who does what and why and when. Then nurses come in and start the iv on my little 7 mos old with little tiny veins that are very hard to find. Poor Ella was poked so much…they even poked her neck and her head:(. I couldn’t bear it, I had to leave. But only to enter a room full of doctors and nurses with papers for you to sign giving them permission to not only perform a risky spinal surgery, but to start pumping poison into Ella the very next day. There was no time to think, no time to absorb anything..We even considered getting a second opinion but they said they would not advise us to take Ella anywhere because of the high risk of paralysis. We had no choice…we had to sign the papers. What a horrible horrible day. Our lives changed forever…I hate this day. May 19th…

AUGUST 2014

This has been a very very rough month for us.  Ella is having more bowel and bladder issues and they seem to have escalated.  She has been chronically constipated over the last few years but not as bad as she has been this past month.  We have been trying to get it under control with the use of laxatives and enemas, but we just can’t seem to get ahead of this.  Doctors are saying that we need to just figure out what works for her…but it seems like nothing is working.  The conclusion right now is that her colon is just not having the contractions it is supposed to be having….most likely due to nerve damage from either the tumor itself, or damage done during the tumor removal on her spine.  IT is so frustrating for all of us….She is in pain daily, very bloated and gassy and very uncomfortable, and then of course the laxatives make her crampy and the enemas just traumatize her so much that she won’t let us change her diaper for weeks after.

She had her 4 month MRI last week.  She did so well this time at the scan.  She is starting to understand the process better…understands she cannot eat or drink anything before, and this time she took the gas mask like a pro. I couldn’t believe it.  We usually have to hold her down, but this time, she totally let the doc put it on her and she took deep breaths till she fell asleep.  It was so nice to see her not struggle.

MRI showed that the existing tumor has not changed in size.  It did show some enhancements (lighting up) in some areas, but after careful review of the scans, the doctor said there was no need to worry.  Her next scan is actually scheduled now for 6 mos away.

Her blood work showed some high glucose levels.  Doc is not sure what this means.  Hoping that is it not a sign of diabetes, as this is not something that runs in our families.  She is to be tested again to see if we get the same results.  I have to catch some urine from her to do this which is always a challenge!!

Someone said to me the other day that I need to start treating Ella like a normal kid.  But in reality, she is not just a normal kid.  She has extraordinary issues and always will.   Right now we are at a wait and see approach with her bowel and bladder, but soon she will HAVE to start school….and these problems will really be a problem.  I hope and pray for a miracle…

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February 2015

So far, 2015 has not been a very good year.  Ella continues to have bowel and bladder issues and everytime an issue arises, it seems to be worst than the last time.

Ella developed a pseudonomal bacterial urinary infection 2 weeks ago.  It was causing her so much pain, she was screaming in pain literally every 3-5 minutes. I ended up taking her to the emergency room where they performed an xray and saw that she had a severe fecal impaction as well.  She had an “excessive amount of feces in her intestines” and a very large impaction the size of a softball high up near her belly.  On top of this she was suffering with a severe bladder infection.  They performed an enema in the ER hoping to give her some sort of relief, however, the pain just got so bad that they ended up admitting her.  The next few days were brutal.  Pain every 5 minutes, screaming and begging for it to stop.  Trying to push laxatives and enemas and ivs on a 4 year old is never easy.  But the pain was unbearable.  After 3 days, they decided to perform a procedure to manually remove the impaction.  She was put to sleep for this, thanks God.

Doc said that her bladder was so full of urine that it was pinching off the intestines making it impossible for any of the stool to come out.  So they were able to drain her bladder and then remove the blockage.  Ella was so much better after she woke up and we were finally able to go home.  Of course at home we had to deal with the yeast infection that came along from all the anitbiotics she took as well as the burn to her bum from the old poop.  She never gets a break.  When it rains, it pours.

This last hospital stay was very hard on her.  She used to be pretty good with doctors, but now she is really scared.  Everytime she sees a doctor now she is afraid they are going to hurt her.  She actually shakes out of fear.   The most difficult thing in life must be to see your own child suffer and to have no control over helping her.

During all of this, Ella also had her 6 month MRI.  Scans showed no significant change in the existing tumor.  It reamins practially the same size.  This is good.  No growth is good.  But shrinking or disappearing would be better!  One step at a time………..

Ella is now in preK.  She enjoys going to school and has made some great friends.  The teachers have been very accomodating to her physical needs and have been able to discreetly change her diaper on a regular basis.  She has had a few kids ask her why she wears diapers and she simply says that she has a hard time going potty.

She is such a smart little girl.  She amazes me every day.  The love of my life, she is my world.

 

September 2015

This has been a rough week with Ella.  Ella started to complain of extreme pain in her right foot.  Pain that was so excruciating she was doubled over and screaming in pain.  She said the pain was on the top of her right foot and nowhere else.  It came and went in waves for several hours at a time and then would disappear quickly. 

After a few episodes, I took her to the ER hoping to find out what was causing this.  They looked at her foot and said they saw nothing….. was most likely either growing pains, muscle spasms or possible nerve pains from regenerating nerves.  There was no treatment.

Went home and she continued with these horrible episodes through the night.  Ended up going to see a neurosurgeon the next morning who believed she was experiencing nerve pain either from her existing tumor or from somewhere in her spine.  He ordered an MRI stat to check to see if her tumor has started to grow causing a nerve impingement.  MRI was done the following day. 

Results were that the tumor remains stable and somewhat unchanged from the last scan in January.  There is certainly nerve involovement at her L1-L3.  However, these nerves innervate the right thigh and right hip.  Not her foot.  So, the tumor itself is not causing this pain in her foot, but conclusion is that it is nerve pain either regenerating or coming from inflammation in the lower spine.

Another possibility is neuropathy caused by her chemotherapy treatments.  Apparantly this is a common side effect of some the drugs she was given at 7 months old. 

If this pain continues, she will be placed on nerve pain medicine, Neurotin, to try to control the episodes.  OF course, this medicine has a large list of side effects that we do not want to put in Ella’s little 4 year old body L

MRI also showed that she is severely constipated (which is unfortunately what it always says) so now we are dealing with increase of laxatives to get things moving again.  On top of this, Ella is now having an allergic reaction to the O2 nasal cannula placed during her MRI and she is having bad allergy attacks L  Lots of sneezing, itching and red eyes.  And lots of Benedryl.

Luckily, she has not experienced the pain in her right foot now for 4 days.  She has however, started to tell me how different her right foot feels vs her left foot and at night it feels like “spiders are crawling on her foot”. 

I feel like I’m on guard at all times,,,,just waiting for the next trauma to occur.  When things start looking good, that’s exactly when things get bad. 

I just wish Ella could go a few months with no issues.  No doctors, no exams, no tests, no enemas, no pushing and prodding.  She’s only 4…..

February 2016

Ella was in the hospital again for another dreaded pseudomonas bacterial bladder infection that required IV antibiotics.  She only had a 4 month break since the last episode.  I cannot stand to see her hurting like this.  The pain is so unbearable, the screaming and crying, and that feeling of helplessness…knowing that all I can do is wait for the medicine to start working….to take effect.  Unfortunately, it takes 3-4 days to get any relief from the pain…those days are the worst.  This just seems unfair.  Stupid stupid cancer.  I blame you for all of this. I blame you for everything.  I blame you for taking a beautiful little child and making her hurt, making her have scars, physical and emotional…making her childhood memories be full of fear and pain, hospitals and needles, medications and doctor appointments, MRI’s and tests, and making her family have to worry every single time she says something hurts, that that stupid cancer is coming back.  Don’t think that just because that cancer treatment is over that the rest of this journey is easy.  It is unfair…that is all it is.  Just unfair. 

She will be seeing her urologist in the next few weeks to determine what we need to do about these bladder infections.  I’m praying for some answers, but I am not getting my hopes up as I have been let down many times in the past with no answers or solutions as to what to do.  WE are unsure of exactly why she gets the infections.  But the thought is that she is unable to empty her bladder completely causing a buildup of urine to get infected.  And for some reason, her body has colonized the pseudomonas bacteria and this is what starts to grow.  It is not a typical bladder infection seen in children.  She is still too young for urodynamic testing and they can be invasive and painful for a 5 year old little girl who has already been through so much.  I am not ready to put her through that. 

Next month, Ella will be having her audiology tests to determine if she has had any hearing damage from the chemotherapy treatment.  She was also be having her oncology checkup.  Her next MRI has been scheduled for September.

Please please please continue to pray for my beautiful sweet girl. 

Infection after Infection 2016

I apologize for not updating my blog for sometime now.  It is now the month of October and so much has happened. 

Healthwise, Ella has been getting numerous bladder infections.  Since the last post in February, she had an infection in March, April, May, June, and August.  We started her back on prophalactic anitibiotics at the end of June so she has had one infection since then.  Unfortunately, her summer was filled with bladder infections.  But she also did a lot of fun things before starting Kindergarten. 

She went camping at Ft wilderness at Disney and Melbourne beach, trips to sea world, lots of sleepovers and playdates, swimming, Crayola Experience, bowling, beach trips….she was very very busy! 

In July 2016, she started experiencing symptoms of anxiety – rapid heart rate, shortness of breath, nausea, trembling, etc.  After ruling out anything medically wrong, the conclusion was the Ella was experiencing anxiety attacks.  It doesn’t surprise me after all she has been through…but really, a 5 year old should not have anxiety attacks.  Things have started to subside recently after some cognitive therapy and relaxation techniques and things seem to be back on track.

She had her MRI in August 2016 which came back “stable”.  The tumor still exists in her spinal canal, but there has been no growth, nor shrinkage, so the results are stable.  As of now, it is not impinging on her canal nor is it pushing on any other organs.  She has not had any complaints of neuropathy in her right foot now since January 2016. 

Ella started Kindergarten this year and is doing fantastic.  She got student of the month the first month of school!  She has made many new friends and seems to be really thriving.  She is learning so much and has now started reading.  She loves her teachers and comes home every day excited to tell me what she did at school. 

She turned 6 this past weekend and had a great bday “cat” party with family and friends.  Every year I feel is another year away from cancer.  Another year to celebrate a cancer free life.  But just because that cancer is gone does not mean that we are feeling secure with Ella’s health and future.  Every time that she has a complaint I fear that cancer.  Every time she says her belly hurts, I fear cancer.  Every time she says her legs hurt, or her arms hurt or she’s tired, or she has a headache, or she’s out of breath, or she’s doesn’t feel good I FEAR CANCER.  And on a typical day, she will complain about something and I FEAR CANCER. 

So, just because her cancer is gone does not mean we are in the clear.  Yes, she is 5 years out now….this is really good and odds are that neuroblastoma will not come back.  At least not in the same spot.  Her chances now of getting neuroblastoma again are just about as good as any other kid.  But tell that to a parent with a kid that had cancer already.  ODDS MEAN NOTHING ANYMORE.   What we look for now with Ella is what is called secondary cancers.  These are cancers that are caused by the treatments of her neuroblastoma.  Yes, the treatments itself, can cause other cancers.  And of course we have to keep an eye on her existing tumor in her spine.  This tumor may not have active cancer cells, but it can certainly start to grow and metastasize in body affecting her organs and spine. 

So, let me tell you….the fight is not over.  The fight will never be over.  The fear will never go away. 

APRIL 2017

2017 has been a pretty good year so far!  Ella has not had a single bladder infection!!  This is simply amazing since last year at this time she was having them monthly!  Now that she is on the prophalactic antibiotics daily as well as no longer in pull ups, it seems that the infections have cleared.  We are so happy:-)   Toileting continues to a be a little struggle however, things seem to get better every day with Ella.  She wears a fit bit daily that has a timer that goes off and reminds her to use the bathroom.  This gives her the independence she wants but still helps to keep her emptying her bladder on a schedule.

She did get the flu this year despite getting the flu shot.  However, she recovered well with no complications.

She had her oncology checkup this month.  They ordered a spinal xray to check on the scoliosis as well as urine check for any increased catecholomines.  Catecholomines are markers in the urine that if elevated can indicate the presence of neuroblastoma.  Ella’s have never been elevated, even at diagnosis.

However, this time that were slightly elevated.  Not enough to be totally alarmed, but enough to make us want to recheck them.  So, I just dropped off another sample and am waiting on the results.

Her spinal xray came back with a “lucency” at L2-L3 of the lumbar spine.  This is something they have not seen in previous scans and it was recommended that she now has a CT scan to get a better look.  This was so scary for us, wondering what it is that they saw and praying praying praying that it was not relapse.

Ct scan was done a week later, and results showed that the lucency was gone.  They say it must have been a bowel loop or gas bubble that appeared on the xray.  Thank God.  Ct scan states “unchanged appearances of masses extending from L1-L2 and L2-L3 right neural foramina into the right paraspinal space.”  So, of course, the tumor is still sitting in her spinal canal, but it has not grown or changed in appearance.  This is fantastic news of course….just want that tumor gone.  On another note, there was NO SCOLIOSIS on the xray.  🙂

So, overall, Ella is doing really well!  She is still enjoying Kindergarten and making some new friends.  She enjoys spending time with her cousins and loves going swimming.  She will be starting piano lessons this summer and is looking forward to spending some days at the Orlando Parks.  I cannot believe she will be in 1st grade next year!

She does complain often of belly aches and nausea.  And she has the occasional neuropathy pain in her right foot that typically comes in spurts and then disappears.  She will be participating in Runway to Hope for the 5th year next month and she is looking forward to it!

Her next MRI is going to be in the month of August.

1

OCTOBER 2017

Ella’s MRI results from August 2017

Impression.  1. Stable mildly enhancing lobular lesions involving the right L1-L2 and L2-L3 neural foramen extending into the psoas musculature.  No new or enlarging lesion is seen.

2.  Extensive stool throughout the colon and rectum, with very distended bladder.  Otherwise, no significant finding within the pelvis.

MRI or Thoracic Spine

The veterbral body heights and alignment are maintained.  There is no focal marrow signal abnormality.  There is no abnormal enhancement.  There is similar mild degree of T2 hyperintense signal within the posterior aspect of the distal thoracic cord, unchanged from the prior studies.

No severe/significant spinal canal or neuroforaminal narrowing is appreciated.  There is an overall stable appearance of the spinal canal.  Multilevel laminectomies are again noted involving the distal thoracic spine through the lumbar spine.  There is bibasilar atelectasis.

MRI of lumbar spine

There is redemonstration of a mildly enhancing T2 mildly hyperintense lobular extradural lesions involving the right-sided neural foramen of L1-L2,L2-L3, extending into the right psoas musculature, with appearance suggesting nerve sheath tumor/neurofibroma.  On axial imaging, the L2-L3 level lesion measures approximately 1.1x 1.9 cm and the L1-L2 lesion measures approximately 1.5×0.9 cm, which are grossly stable to the prior study.

No definite new enhancing lesion is appreciated.

The conus terminates at the T12-L1 level.  There is a similar appearance of clumping of the cauda equine nerve roots, not significantly changed from the prior study.

Again present is postsurgical hardware/material at the L1 level mildly effaces the posterior thecal sac without significant stenosis.

So, bottom line is YES,  the tumors are still there, but NO, they haven’t grown since the last scan.  This is fantastic and what we want to see!

Ella still has neurological issues going on with her bowel and bladder, but this is nothing new.  She is doing fantastic….still no bladder infections since being on the prophalactic antibiotics.   Recent ultrasounds show that her kidneys are doing well.

Ella is now in 1st grade and is doing fantastic!!!  She loves going to school and seeing her friends and teacher.  She loves reading and is recently getting into chapter books.  Her favorite subject is Science and Math.  She loves going outside and catching bugs…ugh and still has a special love for lizards, lol.  She enjoys spending time with all her cousins and family.

She just turned 7 this past weekend and had a “dog” theme birthday party.  We had an adorable dog circus show in the backyard and it was amazing!  So much fun!  Definetely a birthday she will remember!

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20 Responses to Mommys Blog

  1. Betty Rendon says:

    I have just recently undergone chemotherapy for cancer. I cannot even begin to imagine tiny Ella going through what I have gone through! I will pray for her and get her on the prayer list at por church. God bless you both and especially little Ella.

    • O Holy St Jude!
      Apostle and Martyr,
      great in virtue and rich in miracles,
      near kinsman of Jesus Christ,
      faithful intercessor for all who invoke you,
      special patron in time of need;
      to you I have recourse from the depth of my heart,
      and humbly beg you,
      to whom God has given such great power,
      to come to my assistance;
      help me now in my urgent need and grant my earnest petition.
      I will never forget thy graces and favors you obtain for me
      and I will do my utmost to spread devotion to you.Amen.

      St. Jude, pray for us and all who honor thee and invoke thy aid.
      (Say 3 Our Father’s, 3 Hail Mary’s, and 3 Glory Be’s after this.)

  2. Lois Ewing says:

    Michelle, I also know what the chemo experience is like and can’t imagine our beautiful Ella having to go through it. You’re right that she’ll not remember all the picks, pokes and terrible side effects of the process when she recovers so hang on to that thought. She’s lucky to have you as a mother. Love to you and Brian, Lois

  3. Sue Schick says:

    Dear Brain, Michelle & Baby Ella,
    Just received the note from Linda about the upcoming dinner and found your daily blogs. What a wonderful way for all of us to understand what you are going through. The pictures are beautiful and help us to see what your daily lives are like. We continue to send our thoughts and prayers for all of you and we know in our hearts that Ella will make a full recovery from this. She is so precious and you two are amazing parents. Continue to be strong and know that beautiful days are ahead for all of you. Please let us know if there is anything that we can do for you or Ella. We love you all so much and look forward to all of us being together again. Sue, Jim, Julie & Jimmy

  4. ZurichMike says:

    A prayer to Saint Nicholas, patron saint of children, for Ella.

  5. Susie Cone says:

    Michelle and Brian,
    So glad to hear of the most recent positive results. Ella is a strong little girl. We are praying for all of you and love you dearly.
    Love,
    Aunt Susie

  6. Angela Davis says:

    Brian, Michelle and Beautiful Ella Renee
    you don’t know me, but my name is Angela and a friend of mine met you today or last few days and told me the story of little Ella!!! Ella’s story instantly touched my heart. I posted Ella’s site onto my Facebook page to spread the word for prayer for precious Ella and your family. Ella is a true fighter. I pray for strength and comfort for Ella and your family during this difficult time and obstacle. I know what you guys are all going through only cuz my sister and her husband has a 5 year old who has been fighting cancer and complications for 4 years now. Please check out her website at http://www.caringbridge.org/visit/cali name is Caliana Rose Moody. They are true fighters and inspirations and to see them go through this as an infant breaks my heart but it only makes you stronger! Stay strong and hang in there!! Keep the faith cuz God will always be there!!!!! Would love to keep in touch…if you’re interested my email is soccerusa_34@yahoo.com…if there is anything i can do to help or have any questions please feel free to message me!!! Will always be in my prayers and will have my family and friends praying as well!!!!!!

  7. Janet Valentine says:

    Michelle, you are so brave. I have not met Brian and Ella but I know that your faith, and the faith of those who are praying, will bring the miracle that you need. We will keep praying every day. Jim and Janet Valentine

  8. Phyllis Zill says:

    Michelle, Brian and beautiful baby Ella, I was so saddened to hear of the struggle you are going through – but with the positive recent news, I pray that this struggle is over and you can put this terrible disease behind you. I followed the beautiful pictures that were noted on Alison’s page beginning when Ella was first born and was struck by Ella’s beauty. Please know that even though I haven’t seen you for a while, I am praying for your beautiful family. Phyllis Zill

  9. Michelle Renee Lyons says:

    we are praying for your family and your beautiful baby girl !

  10. Terri says:

    Dear God in Heaven….Please heal little baby Ella. Michelle and Brian I am a cancer survivor too and so will your beautiful baby girl. Your story is an awesome one and the outcome is going to be even better then you realize. Hang in there….just hang in there are my words of encouragement. I hope to attend one or more of the fundraisers….I am well aware of the financial hardship this horrible illenss causes….Praying hard for you three.

  11. Dhiya Suresh says:

    I just went on this website to see how Ella was doing, I am glad to hear that she has being doing better! When school was still going on we would pray for Ella everyday, I hope you guys get through this 🙂 God Bless!

  12. janet says:

    I am so glad to hear the positive results from the recent workup for Baby Ella, I wish I could have been there it sounds like a great event and bless God for the people who came together to get great deals, and all the business and people that donated services and all. It is hard to realize what insurance pays for and what it does not. Even without an illness the cost of diapers the first year alone can devestate a family financially. And I really think the turn it inside out and wear it another week doesn’t work with some of these new diapers anyway as they did in my day. 🙂 I pray to everyone daily to help not only Ella, but you and Brian as well going through. Remember when you were younger, or even now, how much I love you and let me know anytime if you can use my help.
    Janet

  13. Teri says:

    Michelle and Brian,
    I do not know the love of children of my own so I couldn’t even pretend to know the anquish you all have had to endure. What I DO know though is God’s love and God’s promise, God’s plan however is one that is on a need to know basis and according to God we do not need to know. As believers though we have faith in our God and though it is blind faith, believers can rest in knowing that God knows what he is doing. I attended the fund raiser at Saint John Vianney’s, heard about it from a friend who knows someone that knows you all, it was amazing to see all the people and that there were complications BECAUSE there was so many. God is good, God is great, I pray for all of you every day, my reminder is the band I recieved that I wear and will continue to wear 24/7.

  14. Jennifer Pelz says:

    Just wanted to say “love you” and have you all on my mind today. Sending big hugs your way. XXXXXXXX

  15. Shannon Woodrow says:

    Just checking in on Sweet Ella. So glad you are about to celebrate her 1st birthday, how thrilling!!! Still have Ella in our nightly prayers and will continue to do so. Your story inspires me as a mommy every single day michelle! 🙂

  16. Found your website because of a yard sale ad on Craigslist. My three year old son was diagnosed with neuroblastoma almost a year ago. Six weeks after diagnosis, his tumor was removed and we were told it had been malignant. He continues to have quarterly scans and they have been coming up clear. Will keep Ella and your family in prayer!

    • Michelle says:

      Jessica-so sorry to hear this…it’s such a horrible experience to go through. Did your son have chemo? Are you at Arnold Palmer? Thank you so much for your thoughts and prayers:). I will keep you and your son in my prayers as well:)

  17. Cara G. says:

    Wishing, praying, hoping for a good outcome and quickly for all of you. Beautiful Ella, my thoughts and prayers always include you sweet girl.

  18. Lisa Cronin says:

    Met you recently at a McDonald’s in Orlando (with my three kids). We are back in Wisconsin but thinking of you all! Hoping & praying!

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