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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

I need to vent

First off I want to apologize for not updating this more.  We have been finally falling into a new normal around our house, at least we thought we were. Adalyn is doing amazing!  She is getting speech therapy once a week and occupational therapy once a week by some pretty amazing ladies!  She is making great strides in both areas and I am so proud of her!

In February she had her tonsils and adenoids removed.  The surgery went well but she became very sick after the surgery which ended up landing her back in the hospital.  We are still unclear on what was wrong.  She had a very high fever for 8 days following the surgery, she had severe pain in her back so she wouldn't want to walk as well as pain in her knees.  They admitted her for scanning and also to see if she had what is called chemo induced leukemia from the chemo that she received during treatment.  Getting the phone call that her blood smear was normal was the best news ever! I came home crying that everything was ok and Adalyn asked me if I was ok and I told her I was crying happy tears because she didn't have a new cancer and she smiled and said "no cancer mommy.  See my port is gone!" She just amazes me with her strength.

When I said that we are trying to get back into a new normal is not about Adalyn, it is about Hannah.  Hannah as you know is Adalyn's older sister, the oldest of the three kids.  She will be 8 in July!  Before Adalyn was born, Hannah is the one who would stump us with her medical issues. Well for those who have been following Hannah's story through Adalyn's CaringBridge remember last summer she became very sick and was hospitalized for an enlarged spleen and liver.  She also had fever that wouldn't go away.  Well we have been being followed at the University of Minnesota for her and we have seen Endocrinology, Rheumatology and many more! Back in September we saw Rheumatology for the first time.  They did testing and saw that she was ANA positive which means that she had the blood test that confirmed she needed an auto-immune work-up.  At that time they were looking for Juvenile Idiopathic Arthirits, lupus and other autoimmune.  When we left after that visit he had said that he didn't believe that she had anything rheumatologically wrong with her and that he didn't need to see her again unless other things were to pop up. Well at that time he had her thyroid tested and it came back that she had antibodies present that shows that one day she may or may not become hypothyroid and have Hashimotos disease since it would be auto-immune since the antibodies were present.  We then went and saw Endocrinology who stated that she would need to have her thyroid checked every year if not every 6 months but it could be years or even into adulthood before the hypothyroid would show itself since she still had normal TSH and Free T4.

Fast forward to December...Hannah started waking up complaining that her hands would hurt when she woke up and it hurt to open and close them.  She also stated that they would wake her up at night tingling and painful.  We contacted Rheumatology again and he said that he would like to see her and we saw him the beginning of January.  He said that he could feel stiffness in 2 or 3 fingers on each hand so it was a mild case of arthritis and to start Aleve morning and night every day and come back in 2-3 months.  We just went back to see him April 22nd.  By now she was having pain in her hands still, wrists, knees and bottoms of her feet.  She would also have pain in her back when she would be sitting for a long time.  He stated that he could feel the stiffness in all of her fingers and thumbs as well as in her wrists. He said that one side of her hips was not wanting to move with the full range of motion.  He said that it was finally long enough and proof that NSAIDS were not treating her pain so she was diagnosed with Juvenile Idiopathic Arthritis and was put on Methotrexate once a week.  He also noticed that her thyroid was very generous and wanted to re-test it even though it was tested 4 months ago.

I got the call about 2 hours after we left the hospital that her thyroid was done! He said that her TSH was 37.73 and normal is below 4.0 so it was almost 10 times the normal limit and she was now diagnosed as Hypothyroid or Hashimotos. So she is now on a thyroid hormone for life.  She takes 4 medications a day now just so she can try and be a normal kid.  She is constantly in pain, she is tired, sad and just not a normal happy 7 year old.

I hate that I cannot take this away.  I hate that I cannot cure her.  They both are auto-immune so they will never go away.  They cannot be cured.  She also is now at a high risk for Type 1 diabetes as well as uvitits which can cause her to go blind.

What sucks even more is how she doesn't understand it all. She asked me last night if she has to take these medications forever and I told her yes, especially the thyroid one. She is worried she can't be what she wants to be when she grows up. She is afraid she can't play soccer because of the pain. I HATE THIS!  This isn't normal arthritis that adults get when they get older that you can take some Tylenol or Aleve and feel better.  No this is an arthirits that doesn't go away, she has to be on chemo (methotrexate) to get some relief. If the oral methotrexate doesn't work then she will need to have injections done weekly. This lowers her immune system so she can't fight off infections as well.  This is not something a child should have to go through.

What also sucks are people's comments. I cannot even talk about this with some of my friends because I get comments like "well another new thing for the Nace kids" or "surprise surprise your kids always have things wrong with them" Now I don't care if they are joking, or if they think we are close enough friends that they can say that, it hurts. It really really hurts. This is my first time even talking about Hannah being diagnosed other than with a very few close people and family.

I just needed to vent. We will get through this. We always do.  We have battled cancer, we will battle auto-immune. Even if it means we do it alone, we will do it! 

Happy Thursday!
Theresa
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Comments

15 Comments

Nigel Burrell
By Nigel Burrell
Good to know that Adalyn is doing so well - but sorry to read about Hannah's trials... Please know that both your brave girls are covered by my prayers for healing and happiness. Thinking of you all from the U.K.

Nigel xxx
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1 person hearted this
Lee Ann Evans
By Lee Ann Evans
Theresa, sorry to hear this going on with Hannah. Didn't know she had more testing lately. I thought because we hadn't heard anything that it was just a "virus". Praying that she is able to find some relief with the new drugs. Now you will have, once again, a new "normal"...praying that God will help you, Tim and the kids during this journey.
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1 person hearted this
Marilyn U
By Marilyn U
Theresa, so sad to hear about Hannah's diagnosis. Many prayers for Hannah, Adalyn and the Nace family. Hope the medications work and have minimal side effects. Hugs
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1 person hearted this
Ann (Burnside) Horrmann
By Ann:)
I am here. Never judging. Call me whenever you need. We can cry together, walk together or just play with the kids! I love you and your amazingly strong beautiful family!
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1 person hearted this
DeAnna Kennebeck
By DeAnna Kennebeck
I don't know how you stay positive but I'm glad you do. Praying for every one in your family.
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1 person hearted this
Diane Santino
By Diane Santino
Praying for the girls and for you, also!
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1 person hearted this
Tessa Martin
By Tessa Martin
I'm so sorry for you all. My niece has also got juvenile arthritis, and is also 7, nearly 8. It's mainly in the hip which means her leg sticks out at an odd angle and makes walking and running really hard. The Dr's gave her an injection in her hip that lasts for 6 months, it was great for 3 weeks, then it stopped working. It's heartbreaking watching her trying to be a normal 7 year old. We're in the UK and there is hardly any funding for better treatments, even a hip replacement won't help as she's so young. I really hope this treatment works for Hannah
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1 person hearted this
Jacqueline Lehman
By Jacquie
Oh Hun I'm so sorry you guys are having such struggles. I pray that each one of them can start to feel better and try to have a normal life. I feel so bad I can't begin to imagine what you are feeling! Do know that you are not alone and the people that say that stuff to you, don't need to be a part of your lives!!! Take care Hun and I'm going to cont to pray for you and your family.
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1 person hearted this
Shira Trick
By Shira
You're not alone. I don't even know you, but my prayers and love are with you and your family. Never feel you are alone!
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1 person hearted this