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Adalyn’s Story

We've created it to keep friends and family updated about Adalyn's fight against Childhood Cancer. Get started by reading the introduction to our website, My Story.

Benefit Fund:
Checks can be made out to:
The Benefit For Adalyn Nace

Can mail them to Tim and Theresa
1332 5th Avenue South South Saint Paul, MN 55075

Or deposit them at any Postal Credit Union. You can also mail them to:
Postal Credit Union
1725 S. Robert Street 
West Saint Paul, MN 55118-3934

UPDATE...

Adalyn is in REMISSION 1-17-13 

***UPDATE***

Adalyn went to the eye doctor on September 21st for a routine exam. It was told to Theresa that she had tumor in her right retina. On the 24th, Tim and Theresa were told the devastating news that their 9 month old has Retinoblastoma, a rare pediatric eye cancer. Follow along as Adalyn takes on Childhood Cancer and beats it!

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Adalyn was born on Saturday December 3, 2011 and she was perfect!  When she was a day old in the hospital, Theresa had noticed that her left side of her body would tremor.  She pointed it out to the nurse and all she got was..."oh she looks perfect to me, she is just trying to get used to being outside the womb." 

For those of you who know Theresa well knows that she wasn't going to just settle for that.

When Adalyn was 3 weeks old she started having issues with eating, she was always gagging and choking when she would eat and she would look like she was drowning.  She was brought into Children's for a swallow study and was told she was aspirating into her lungs so she would need to be on thickened milk.  No problem, Tim and Theresa could handle that!

At 5 weeks old she was hospitalized in the PICU (Pediatric Intensive Care Unit) for a week with RSV. She was having periods of APNEA so that is why she went to the ICU.  During that time she had a strange episode of arching her back, getting stiff as a board and turning her head in a weird position all while making a high pitched cry that Tim or Theresa had never heard before.  Theresa told the nurse that she couldn't bend Adalyn and that something was wrong so a doctor came in and looked at Adalyn and said..."Oh that is reflux, she can't handle eating right now so we will give her an NG Tube later to get her to eat"  So that begins the journey of the WRONG DIAGNOSIS.

At about 13 weeks old, Tim and Theresa noticed that Adalyn just didn't act like normal "babies" should.  She wasn't laughing, rolling over, grabbing at toys, playing with her hands/feet, and sitting still.  She was always moving, she couldn't control her body, her head was always bobbing and she was STIFF and RIGID.  When you held her she would keep her back arched like a seal.  There was no way of manipulating her body to look any other way.  She also became very inconsolable, it was like she was forming colic when babies normally start growing out of it.

In the beginning of April 2012, Theresa called Gillette Childrens and asked to have Adalyn seen by a neurologist because she was suspecting Infantile Spasms.  Adalyn was immediately seen the next day and had a 4 hour Video EEG completed.  Luckily, there were no seizure activity seen on the EEG but it also wasn't quite normal.  She also failed her neurological exam, she was keeping relexes that newborns have that she should have outgrown and she was not getting reflexes that 4 month olds should have.  She also has increased tone in her extremities and deep reflexes.  She is very stiff and arches her back.  She keeps her left arm in weird positions (remember the side that was tremoring, see, Theresa knew something from day 1!)  She was scheduled to have an MRI on April 24th.

April 21st...Adalyn wasn't eating very well and had a fever.  This isn't anything new to Tim and Theresa but knowing that she had her MRI on Tuesday and would be sedated for it, Theresa took her into Children's to see if she had a cold/ear infection/ect.  The doctor came in and told Theresa that Adalyn would need to stay overnight because she was "clinically dehydrated" and also was a "Failure to Thrive" She had went from the 75th percentile to the 40th percentile in 1 month. Well the overnight stay became a 10 day hospital stay.  During which, Adalyn had seen every specialist known.  The MRI did happen and her brain looked normal, they said that they still cannot tell us if it "works" though. Only time will tell us that. 

They believe that Adalyn has Cerebral Palsy.  She is a medical mystery though to the Neurologists at Gillette since she can flucuate her tone from low to high. She doesn't lose her tone while she is asleep which means Cerebral Palsy because it doesn't go away with sleep. She also has low tone in her mouth which is what is causing her not to want to eat.  She had a G-Tube surgically placed on April 27th.  That will stay in until she no longer needs it for 3 straight months (that includes medications)

We have a LONG road ahead of us.  We ask that you please keep Adalyn in your prayers, along with Tim, Theresa, Hannah and Benjamin.  We are "FINDING ADALYN" we are learning "who" Adalyn is and "how" Adalyn will be.  Either way, this "IS" Adalyn, it makes Adalyn, Adalyn!

Latest Journal Update

Update on Life!

Wow, many apologies for not getting any updates on here about Hannah and Adalyn.  We have been just taking everything one day at a time and moving through the motions enjoying life and family.

Ok, a little couple updates about us.  I was able to head to a Momcology Blissful Escapes Retreat the beginning of October and it was MUCH NEEDED.  It was 13 other mom's form Minnesota, Wisconsin and even one from Illinois (Hi Val!) who have children with cancer.  Everyone was in their own stage of treatment and it was great to meet with other moms who "get it" and to be pampered for a weekend.  We got massages, did yoga, pictures were taken, and we even belly danced!  There was a lot of laughter as well as a lot of tears but they were cleansing tears and it was very renewing and wonderful.  I am incredibly blessed by all the moms that had attended and everyone of them holds a special place in my heart!

This past Sunday-Wednesday we headed to Joshua's Camp at Metropolis resorts in Eau Claire, Wisconsin where we met with 7 other families that have been affected by childhood cancer.  There were families from Wisconsin, Minnesota and even Illinois again (hello Val!) It was such a wonderful time.  We were able to have some much needed family time away from reality.  The volunteers that ran Joshua's Camp were amazing as well as the staff from Metropolis.  We will for sure be heading back there again sometime.  The kids had a blast.  Tim and I were able to meet with all the parents for a group discussion about what we are feeling and going through.  It was great beacuse it was both the mom and dad in the discussion, it helps to hear what the dads feel while they are going through this and to have them feel safe to talk about it with other dads who "get it" so I am very blessed by that as well.  More families that hold a special place in our hearts! Thank you Joshua's Camp and Metropolis Resorts!!!

Update on Adalyn: Adalyn is doing well.  She is still waking up in the middle of the night and climbing in with Tim and I.  We aren't really sure what is going on with that but we hope we will get some answers on October 29th.  She will be admitted to Gillette Children's on October 29th-31st for the ovenight Video EEGs to see if she is having seizures at all when she is waking up in the middle of the night.  We noticed that she cries a lot in her sleep as well so we aren't sure if that means anything either.  I will make sure to update when we know more about that.  We hope to home in time for some Trick or Treating on the 31st!  She is going to be Elsa!  Surprise, Surprise!!  She has been complaing of her tummy hurting for quite awhile but we are in a waiting game for that.  We will be bringing it up mid-november when she has her next oncology follow-up if she is still complaining of it, or sooner of course if it gets worse.

Update on Hannah: Boy oh boy, where to even begin.  Hannah is really stressing us and worrying us beyond belief.  She is just not back to her normal self at all.  We even had a couple volunteers at Joshua's Camp think that we were there because of Hannah and not Adalyn.  They also asked if she had just had treatment the week before and that is why she was so tired, pale and not smiling, so it broke my heart to explain that it isn't Hannah but Adalyn that has cancer, that we are still not sure what is going on with Hannah.  Hannah is still having stomach pains, they are to the point where she cannot lay on her stomach while she is sleeping because it hurts, she will wake up in pain and have to move.  She had a CT scan of her abdomen on September 26th to make sure there were no masses and we also met with Rheumatology because of her having a positive ANA test (anti-body screen).  The CT scan showed nothing more than just an enlarged spleen that was actually slightly larger than what it was on September 8th when we ended up in the ER at the University.  The Rheumatologist didn't believe that she had anything rheumatological going on, such as lupus or juvenile arthritis, but he wanted to have her thyroid checked.  We received the results of her thyroid on Monday and it showed that her TSH level was normal but he also tested for two thyroid antibodies and they were both very positive.  When he called me he said that he wasn't sure what it meant since her TSH was normal, it doesn't seem to be her thyroid. He did say that they could no longer rule out lupus, arthritis or cancer now since these markers can be positive in those cases as well.  So we were back to the drawing board.  I spoke with her oncologist later that week and she mentioned that she was confused!  Her WBC count was low normal back on September 12th but now on the 26th of September it was low again.  She referred her to see Immunology.  We will be seeing Immunology on Monday, October 20th and hopefully they can help shed some light on her.  They have blood work ordered for her and if we again get no clear answers her Oncologist will be seeing us on October 31st.  She did warn me that if there are no clear results we will be talking before we see her on the 31st and the 31st may turn into a bone marrow biopsy since we need to know what is going on.  She is always tired, pale, lethargic and withdrawn.  She is not happy Hannah and it is breaking my heart.  She has pain in her legs and back as well that comes and goes along with her neck.  I just want some answers so we can get back to normal or at least know what it is that we need to do to treat her.  She will also be seeing Endocrinology in November.

Tim and I are missing so much work lately that it is really starting to become a stress at both of our jobs.  I am going to be out again the end of October for Adalyn's 3 day scans and Tim has to be out on Halloween to stay with Adalyn so I can get Hannah to the Oncologist.  In November Adalyn has appointments with her Oncologist and the Optometrist on Wednesday the 12th, she has scans on Thursday the 13th and then on Friday the 14th Hannah meets with Endorcrinology so that again is 3 days in a row that work will be missed.  I am just ready for all the appointments to be over.  I just feel like I have hit my breaking point with appointments.  I just want to see the light at the end of the tunnel. I know all of this is needed and we need to have our children be seen and of course we will do anything and everything we can for them, it would just be nice if things would slow down or at least have answers to our concerns.

I will be sure to update again as soon as we start getting some results back.

Please keep the prayers coming, we need them!

Love,
Theresa, Tim, Hannah, Benjamin and Adalyn
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Comments

5 Comments

Nigel Burrell
By Nigel Burrell
So glad to read that Adalyn is dong great, but sad to know that Hannah is so down and not herself... Praying for healing for both your girls and for happiness and peace of mind to head your way.

Nigel xxx
Marilyn U
By Marilyn U
Many prayers for all of you.
Tessa Martin
By Tessa Martin
Praying you get your answers💛🙏
Valerie Keller
By Valerie Keller
Hi and love and hugs and prayers from Val in Illinois and the rest of the gang too xxoo
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1 person hearted this
Claire Falls
By Claire Falls
Theresa and Tim you are always in our prayers. We will be praying you get some answers and so you can get some relief from all the stress.
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1 person hearted this