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Hannah’s Story

Hannah received her new bone marrow  June 25th. Thank you unknown donor! May God bless you with lifelong health.  Send cards or pictures to Hannah for her wall at:  
HOME!!!!!!!!!!!!

Hannah Wertens
65 Tallman Ave
Portsmouth, R.I.
02871



 

 

On December 18, 2005, Hannah complained of knee pain. I thought she may have hurt herself the night before at her sisters 13th birthday party. She was running around with the big kids. She never complains and tries to keep up so it was not unusal for her not to tell us that she was hurt. By that late afternoon she refused to walk. We took her to the ER and she had Xrays. They sent us to Hasbro as they thought she had Septic joint and her Seg rate was high. We stayed over night and then went home. They thought she had toxic sinivitis. She had a cold a couple of weeks before and they thought it settled in her knee.

She started to feel better and then a week later she fell off her stool washing her hands and would not walk, back to the ER on Christmas. They thought she was just scared because of what had happened before and she was faking but she did have an ear infection. Her pediatrician was on vacation so we went to the oncall a few days later. She sent us to get Xrays- they came back and she started to feel better.

Her doctor came back and I just wanted him to look at her because she still had a slight limp. That was Jan.4,2006. Then she stopped limping and returned to preschool on Jan. 5, and I went back to work. Then the world went backwards and ceased to make sense. My grandmother died that day and I was at the funeral home making the arrangements when the nurse called and asked me to bring Hannah in for the test results. I knew something was wrong because they usually tell you over the phone. I thought it was septic joint and I was worried she might to have a needle in her hip, how I wish. Thank goodness my parents were there and we picked up Hannah from school. Her doctor said it was Leukemia and we have to get her to Hasbro right away... they were waiting for her. All I can remember saying over and over is NOT MY BABY!!!!!

I was dropped off to pack for the hospital while they picked up her sister from school. I had a few minutes to prepare Cynthia that her great grandmother died and that her sister was very sick and that she needed to stay with her grandparents for a week (which turned into a month).

We went to the hospital and they began telling us that they were positive but she needed to have a spinal and a bone marrow aspiration to find out which type. They would do it in the morning. Everything moved so fast. They had lots of information and then we found out it was A.L.L. They explained the different parts of the protocol and that next Monday they would put a port in her chest that would be for her medicines. She would start chemo that day. She had a ton of chemo and many blood transfussions and platelet transfusions. It seemed that she was getting medicine around the clock. They were teaching us about all the medicines to go home after 2 weeks.

Just as we were about to go home she had developed a fever and had to stay so she could be infused with antibiotics. Because fevers are life threatening, any time she has a fever we need to get her to the hospital within an hour and we live an hour from the hospital. I cried pretty much the entire month telling Hannah I had belly aches. She would try to make me feel better by saying "I love you all day, Mommy"

Then one day she said "Mommy cry, mommy sad, mommy worry about me"- only 2 years old! I had to pull it together and did not cry in front of her any more.

She had always been tiny and she weighed 29 pounds when we went to the hospital and by the time we went home she weighed 42 pounds, her skin stretched so much it looked plastic and looked like she was uncomfortable. She could not walk that much. Her muscles were weak and she had gained so much within a couple of weeks. She needed to be carried and pushed in the stroller and her moods were very up and down and emotional.

She was on steriods for the entire month and would continue throughout the entire 3!!!!!!!! years of treatment in different amounts, at the least 5 days a month. She would get so hungry wake up at 2 am in the hospital screaming and crying for bacon and clam cakes and pepperoni. She would cry and said that her eyes were not right. She had seen more doctors because her eye would just about close and she could not control it. She had many more transfussions and her counts were down and her ANC would bottom out to nothing.

We went home and had to get used to a new life. I was on leave and she could not go back to preschool, it was to dangerous. We had a visiting nurse and back to the clinic at least once or twice a week. Then at the end of February I told the visiting nurse that if she had a limited time that I thought we would be ok until she had to be accessed at home later in March. Well on March 4, two days after she had her 10th surgery to put the chemo in her spine and brain, she had seizures, petite and grandmal.

Latest Journal Update

Update and request please!

Hi My Friends,
               Thank you all so much for your continued PRAYERS, support and kind words! They mean more than I am able to express! Our dear friend David was able to go home for a few days with his family before his journey to heaven.  Thank you soo much for your prayers! Please keep his wonderful family in your prayers! They are such a special family.
              I have a lot to update as Hannah has been to a lot of specialists! I apologize in advance for the rambling.Hannah went to the new endocrine doctor  in Boston and was put on the hormone replacement in September. She started the progesterone and estradiol . She also went to the diabetes specialist in Boston and her A1C was 6.9 and she said she would watch it. Then this past week we went back to them an the endocrine doctor told Hannah that she is 4'10 and was not going to grow anymore. Which made Hannah hysterical and then she told her that her breasts have not developed and that she was going to double the estradiol but did not think that it would change. Then Hannah was even more hysterical! We went to the diabetes specialist and she told Hannah yes she had it because her A1C was 6.8 and that was the range that put her in that category. She said that next visit  we would learn to start checking it at home and also start Metformen (sp?) When Hannah got upset and began crying the Dr. tried to explain that she met with the nutritionist and she was doing everything right and she is sure that it is because of the high dose chemo and radiation and there is nothing she can really do for it and it is not her fault.That made her even more upset because she has been trying to  eat better and exercise and she feels it was not worth it.  Now they want to refer her to 2 new specialists in their office which makes 5 in Boston and they are not able to coordinate the visits and Hannah is upset because between the appointments and her getting sick she feels she misses too much school and is afraid to fall behind.
       Hannah has been vomiting again and having  belly aches since September again. I thought it may be the hormones but Endocrine didn't think so , she may have started cyclic vomiting again.  Her bloody noses have started up again and the ENT is watching her closely and praying she will not need surgery.  Hannah went to the Gastrologist last week and he checked vit D level (waiting for results) we had switched to 1000 every day to see if that would help.Her liver functions are still high and although she has fatty liver disease, he is certain  that is not the cause.He said that if they were still high in 3 months she would probably  need a liver biopsy to find out what was going on. Hannah had been crying the whole visit with everything and he finally saw her anxiety and was trying to reassure her. Then he told us she was his last patient ever as he was going to Boston and do research! He referred her to his replacement but I am asking any of you if you know of a pediatric  Gastrologist in our area in case we need a second opinion.   
                         There is some great news in here! Saturday Hannah had a fabulous day! She had breakfast with Santa at school and she loved it!   Then that night we went to Black  Valley with the oncology clinic at Hasbro to the POLAR EXPRESS! It was amazing! It is the 10th anniversay of the movie and the author was there and he rode in their car and read the book , then he autographed a book personally to each child! She met his wife and just loved her and wanted  a picture with her too. She also met Patrick Kinkade    (brother of Thomas ) he runs Thomas Kinkade studios and is an amazing artist too. It was a fabulous night and we were with amazing staff  , a once in a lifetime experience and after the week she had I am sure GOD knew this was just what she needed! Praise GOD!                                                                                                                              Hannah went to the Neurologist and he referred her back to the sleep clinic in Hasbro this time and to the eye specialist to check her pressure to check for  pseudo tumor.  Well today we went to the eye specialist and her cataracts have not changed which is good. Her left eye pressure was normal but her right eye was 30 the first time then 28 and then he got a 22. That means we continue to monitor it. She also needs glasses and she is not happy about that. On the way home today she began to cry and say why can't I ever go to a doctor and they tell me I am all better and I don"t ever have to go back.  I just want to be normal, how come every time I go to a doctor they find more things that are wrong with me? I did not have an answer but I did remind her that although the doctors are good they do not know everything! Only GOD does and we prayed for complete healing here on earth! I am begging you all to PRAY for Hannah's complete healing here on earth! Also please PRAY that she does not get depressed again ! Thank you all so very, very much! Next week she goes to the Podiatrist for her radiation toes and then the following she sees the Pulmonologist  it would be great to see improvement as she has less than 50% lung capacity!
                               I apologize for the rambling! I was trying to remember everything! I am  so grateful for each of you! I can not tell you how much it helps to be able to  come here and know you are there for us and PRAYING for the Princess! It is hard to express everything you all have done for us! Thank you sooooo much! PLEASE PRAY! I have one more request for the best PRAYER TEAM ever! Our friend Miss Toria , who has helped us so much and has updated for us when we are not able is having some health issues and could really use your PRAYERS for complete healing also! Thank you all so much!
    Love and Blessings sent your way!
 
P.S.   More good news!    Yikes Hannah asked me to write this!  Hannah is in the Christmas Pageant at school and she plays the ghost of Christmas Present . If you are local and would like to see a fabulous performance and great holiday cheer it is Tuesday Dec.16th at St.Lucy's Church, 913  West main Rd    Middletown at 630 It is free and they will pass the basket in the middle for donations for The Wounded Warrior Project!   Thank you all again!



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Comments

6 Comments

Donna Cambio
By
Hang in there my friends! Break a leg tonight, Hannah! (hopefully you know that means good luck in the acting world!!)
Meta Armstrong
By Meta Armstrong
Praying for Hannah's complete healing. I cannot imagine how depressing all these doctors visits are. Bless her.
Nigel Burrell
By
Hannah sweetheart, there is a saying "the best things come in small packages"... I am only 5 foot three inches tall myself, so I should know! ;o) As ever, sending out prayers and healing wishes for Hannah and you all from the U.K. - have a blessed Christmas! :o)

Nigel xxx
Christine Gorman
By Christine the Pirate Mommy — last edited
Dr. Jarred Silverstein...he is a wonderful GI Doctor at Hasbro Children's hospital in the GI clinic in the basement. You will love him....he is one big person...The first time I met him I was shocked because he stands at 6 feet 7 inches tall...he has a wonderful bedside manor and will bend over backwards to help. Tell Hannah not to be sad...she has come such a long way...I think that a getting to bone marrow transplant gave her...HER LIFE BACK...of course nothing is perfect in this world but there is still so much to grateful for. Remember there are some people who are not lucky as her. Live everyday to the fullest and being 4 feet 11 inches in not that bad...My Grand-Mother was the height and she married my Grand-father who was 6 feet 4 inches...Height doesn't matter ask your best pal Victoria...she never let that get in her way
Sheli Silveria
By Sheli
I agree with Hannah. It's not fair for her or you either. Life burdens at her age are enough. Celebrating all the great moments is fantastic. But I know you are all exhausted. We love you so much!
Marilyn U
By Marilyn U
So sad to hear Hannah continues to have so many health issues, pray for answers that will help Hannah. Hope your family has a Blessed Christmas season.
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