Nora being Normal.

On October 5th it will be a year since Nora’s 2nd Bone Marrow Transplant. She is doing unbelievably. She is a miracle girl.

For the last day of school in June 2014, Nora was approved to go to school. Her doctors told us she a normal kids let her have a normal summer. So we spent the whole summer having the best summer ever!

She was allowed to go to Splish Splash, the Beach, Camp! We spent the first summer in three years doing kid things. We look back at our past three years of hospital time and cant believe how far she has come. She is even taking Horseback Riding lessons!

She has gone back to school for 4th grade this September the first time since Kindergarden. And she is loving it.

She does have one complication and that is iron overload. Because of her countless blood transfusions, she has too much iron in her liver. So every two weeks we go to the hospital—Sloan once a month and Stonybrook once a month—and she has 120cc of blood removed from her (called phlebotomy) in the hopes that the new red cells generated will go to the liver and get the iron stores there. So far she only gets tired a day or two after each phlebotomy. We are hoping she won’t need to take medication to do this.

As we look back on this site, we can’t believe we are in our fourth year of Aplastic Anemia craziness. It is a bit overwhelming. Nora can we believe just how dangerous this ride has been and how many times we had almost lost her. I can’t believe we just pushed through and I am so amazed by my little one at her perseverance and determination while being just the most joyful child I have ever met.

She’s just having fun as a normal kid. God is good.IMG_0522 IMG_0525

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Nora’s going home!!!!!!

We got the OK today from Dr. Boulad. Her numbers are up we can go home!!!! YIPPIEEEEE!!!!!!!

We have to come to Sloan on Monday’s and Stonybrook on Thursday’s. We are elated, but for Nora it is bittersweet. We have made so many friends here at the house that saying Goodbye is going to be hard. Here she is “normal” out in the world, people look at her bald head, gloves and face-mask and are very uncomfortable. (If you see her… don’t feel bad, she is healing.)

She is also going to miss being around everyone else who is in the same boat. I am going to miss being around other parents who know the lingo, who are so generous and remarkable. We are part of a “club” that no one wants membership. I am also going to miss having someone else cook dinner every night!!!!

We will be heading out Tuesday, August 28th around 2pm and should be home by 4pm. Looking forward to seeing Nugget and all our loving and supportive friends in Mastic Beach.

Goodbye Ronald McDonald House, Hello Long Island!

Nora August 2012

Hi Everyone!

It has been awhile since we wrote. So many things have happened since Nora’s transplant on  May 24th. She has been doing great! She and her friends at the Ronald McDonald House rule the place. She had a wonderful time at Ronald Camp (its now over) and her numbers slowly were going up. Then she got a cold and her numbers plummeted. We were very nervous, the doctors couldn’t tell us why, and she had to have yet another bone marrow biopsy. That happened the same week of the Smith Point Triathlon so needless to say, I was a mess.

Our anxiety was in vain because her numbers bounced right back after she cleared her body of her cold. The biopsy and DNA results all came back and the transplant is successful! She has full functioning bone marrow she is producing A- blood and her DNA is 89% male (which is good). 

We are waiting for her numbers to climb above “normal” and then Dr. Boulad will send us home.

Keep praying for Nora and if you could please add her friends here at the Ronald McDonald House. 

Nora 25

Aside

Hi Everyone,

Nora is doing well. Her platelets are normal, she is beginning to make blood, but she is still skirting around being neutropenic. She takes 21 pills in a day. 6am, 10am, 12noon, 2pm, 6pm, 10pm and 12midnight. She is getting used to waking up, taking a bunch of pills and going back to sleep. This is just how she has to do it and she has adapted nicely.

It has been just over a month from her transplant and she is really enjoying the Ronald McDonald House. There are lots of people here from all over the world with various diseases. They are all kids… so they all just get along and no one cares that she is bald, or that someone else is in a wheelchair, or someone else is blind. When they meet…
Nora: “What are you in for?”
Kid: “xyz disease”
Nora: “Huh. I have aplastic anemia and just had a bone marrow transplant… wanna play”
Kid: “Ok”

Nora is the social director as you can imagine. She is always dancing and starting some new activity. If some kid is standing on the outskirts she is always ready to pull them into the group. There was a little boy here who was like Arik, 8 years old, quiet and looking for someone to tell him what to do, Nora took no time at all to buddy up with him and made sure he was a part of everything. He didn’t want to leave to go home!

Nora and I spoke at a fundraiser for the House. Mike Farrel of Annaly Capital Management (Wall Street Firm) donated $330,000 to the house. We thanked him and told Nora’s story. She made a few grown men wipe their misty eyes with her matter-of-factness and giraffe eyes.

We have been coming together as a family every weekend. Arik, Nora, Shawn and myself are all together which is nice. June 24th was the 1st time since May 18th we were all together, and we are the lucky ones. There are a bunch of families from other countries that have been separated for months and months.

Arik and Nora were on Eyewitness News promoting the House and the “Weird Science” program. You can see the video here. http://abclocal.go.com/wabc/video?id=8723351

We thank you all for everything you have done. With financial support, toys, donating blood and especially praying for her. We are WAY behind on the Thank You cards and be sure that someday you will get one…

She is really doing well. Thank you for all that you do! Your efforts are appreciated. Please keep the prayers coming!

Love Always,
The Getchell’s
Shawn, Maureen, Arik, Nora and Nugget

Nora 23

Hi Everyone,
 
Nora is doing amazingly well. She is up, dancing, playing balloon volleyball for hours, she keeps her yoga, karate, and dance teachers on their toes. She has really been putting our crafting skills to the test. Today we made a straw and pipe cleaner chandelier complete with construction paper candles. Her room is a magic garden with flowers and fairies and butterflies everywhere! Its so Nora… super girlie-girl yet she has turned her magic wand into a sword and makes time for practicing her fencing and martial arts… in a pink dress with a bow of course.
 
She has a “store” ‘Nora’s Glitter Shop’ where people can come by and get glitter tags for their IDs, glitter bookmarks, bedazzled bottle caps on safety pins, necklaces, bracelets and sun catchers. The floor is eternally covered in glitter. Every time Shawn or I leave we look like we have been at a rave… (if an exhausted middle aged couple went to a rave.)
 
The nurses cannot believe that she is only three weeks post-transplant and has yet to take a nap! The doctors have reduced her medicines on the IV drip. She is taking most meds by pill now and is on a ‘need basis’ for the anti-nausea medicine. (She hasn’t needed it.) She is still eating, still drinking her fluids and still a bundle of energy. The only way I can explain it is, last year she acclimated to life with no blood, now she is making blood and she doesn’t know what to do with it! It makes her super-hyper! Everyone walks in sees her jumping and bouncing and is shocked.
 
Her doctor is thinking that if all goes well, and her tacrolimus (medicine) levels stay even now that she is on pills, and she continues making blood at the rate she is now—that she may be discharged next week! If that is the case, we’ll be at the Ronald McDonald House early. She still has to come in every day, outpatient for a month or so. During that time we won’t have the benefit of the “clean room” and Nora will once again have to be the one with the mask on, instead of the other way around like it is now. 
 
She still has a ways to go and she won’t be declared “Aplastic Anemia Free” until May 24th 2014. But if she keeps this up she will be a normal kids again by Christmas. Please continue to pray for her. All these prayers from around the world have been giving us the strength we need to do this. THANK YOU!!!!
 
Love Always, 
The Getchells
 

Nora 19

Hi everyone,

We had another big day last week at Sloan. Nora began her tests to be sure she is healthy enough for her transplant. She still has to do EKGs, lung-function and a stress-test along with lots of other blood tests. We should be going in for an overnight in the next few weeks sometime to get all of these done. She should go into the hospital on either May 7th or May 14th to begin treatment. This is all still up in the air as we need to make sure she and the donor are free of colds/bacteria and he gets time off of work to do the harvest.

We found out her donor comes from the International Registry. They match 10/10 perfect HLA typing!!! What we know about him is… we know he is a male. We know his blood type is A-. We know he is CMV+. We can meet him (if he agrees) in two years. Some cool things that will happen after the transplant… Her blood type will change and she will no longer be O+ which is wild! Nora will absorb his DNA. They will essentially be genetic twins!
We signed the paperwork and Nora is officially entered into the NIH/MSKCC Aplastic Anemia Clinical Trial. Official title: “Fludarabine-Based Conditioning for Allogenic Marrow Transplantation from HLA Compatible Unrelated Donors in Severe Aplastic Anemia.”

  • She needs a lumen catheter in her chest for the medicine
  • Bone marrow aspiration just prior to receiving her chemo.
  • Fludarabine (Chemo) for Mon., Tues., Wed., Thurs.
  • ATG (Immunosupressive) Tues., Wed., Thurs.
  • Cyclophosphamide (Chemo) Tues., and/or Wed. (depending on the trial)
  • Low dose Total Body Radiation Fri.
  • Bone Marrow Transplant Saturday

For much more detailed information check out:

http://www.mskcc.org/pediatrics/pediatric-clinical-trial/06-056
or
http://ClinicalTrials.gov/ct2/show/NCT00474747?term=aplastic+anemia%2C+allogeneic&recr=Open&gndr=Female&age=0&phase=1&rank=2

We have been going through the side-effects and the long term effects of this transplant… and it is really scary… but the alternative is just unacceptable. She will go in for 30-60 days inpatient (stays in the hospital), 40-60 days outpatient at the Ronald McDonald House. Then around 100 days she will be able to go home and travel in bi-weekly, then weekly for a year. She’ll have to get all new immunizations. After 2 years she will be considered “cured” and she will be in her “new normal”. She will be monitored the rest of her life to check for cancers, growth problems, hormone issues, and anything else that pops up since she is only 1 of 81 people in the trial.

We have been getting lots of amazing people looking to help—which we desperately need—but with everything going on, the idea of project coordinating volunteers is sort of overwhelming me… so the National Bone Marrow registry turned us onto LotsaHelpingHands.com it looks really useful for anyone who wants to help. Check out the blurb below and sign on if you are interested. My sister Rachael will be the coordinator.

Lotsa Helping Hands
is a private, web-based care-giving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis to prevent caregiver exhaustion. Designed as a service for the National Marrow Donor Program.
Each community includes an intuitive group calendar for scheduling tasks such as meals delivery and rides, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages.

If you have asked “what can I do to help?” the answer is sign up and you will be approved to start helping.

https://marrow.lotsahelpinghands.com/c/656087/

Please fill out the right-hand side of the form which is a “Request to Join the Community”.  Instructions will be sent for setting a password and signing-in.

So that is where we stand. We are getting excited and nervous all at the same time. Keep praying for us. We really appreciate everything everyone has been doing for us and we really truly love you all!

Love
The Getchell’s
Shawn, Maureen, Arik and Nora