Nora 21

Hi Everyone,

We had a little scare this weekend.

It was Arik’s first communion and after the Mass we had a small party. Nora was having a wonderful time with her cousins and friends. Late in the evening, she was playing tag with our Alter Servers, Rebecca & Ryan—then she tripped and stubbed her toe. She actually split her second toenail in half horizontally. It wouldn’t stop bleeding so… “PARTY’S OVER, Nora has to go to the hospital.” We got to Stony Brook around 7PM and the doctor ordered her a complete blood count, antibiotics—and when the counts came back—platelets. Once she was all “juiced” up, the doctor removed her toenail. Yes, she screamed like she was at Guantanamo. We got home somewhere around 3:30AM. Happy Mother’s Day to me! (Is the sarcasm coming through?)

We were worried about her transplant and if this would set her admission date back.

This morning we went to Sloan she had her counts done again and we found out she is again neutropenic. (Cannot fight infection.) But surprisingly, the toe looks good. Just scabby. Thank you blood donor for your platelets! (Please Give Blood!) So we went to the radiation lab and saw how Total Body Radiation works, the room, the machine that will zap her, the place she can talk to people outside the room… We were told that there is a robot that takes the zapped blood and carries it to the different labs for testing. She is VERY anxious to meet R2D2 and hopes on its lunch break it can stop by and visit her everyday in her room. (Kids crack me up.)

So the transplant is a GO! We will be at the hospital this Friday and transplant is the following Thursday.

Please keep her in your prayers!
Love the Getchell’s

Nora 20

Hi everyone,

Nora’s transplant has been scheduled for May 24th. She will be admitted to the hospital on May 18th and will get her lumen catheter in her chest for her Chemotherapy/AGT and a bone marrow aspiration and biopsy. On Saturday the 19th she begins her Chemo. On Wednesday the 23rd she undergoes total body irradiation (TBI) and the donor’s marrow is harvested from wherever in the world he is, and flown to NYC. Nora will get her transplant on May 24th. Her second birthday!

Shawn will be in the first week. We will both be in on her transplant day, and then we begin the weekly switch until she gets home sometime in September. Thank you to everyone signed up at lots of helping hands. https://marrow.lotsahelpinghands.com/c/656087/?sw=no My sister Rachael and I will be adding things we may need help with as we go along. Please keep up with Nora on her blog www.norasstars.wordpress.com we will be posting video and notes as we go. She wants to type her own story. If anyone wants to visit… please don’t… she cannot have any germs so the less people the better. We may be up to skypeing on days she feels well.

Nora has a centered-calmness, deeply rooted in faith, that comes out of her like light. I keep wrapping my head around the fact that this child not only missed first grade, but is going to miss her entire summer vacation and part of second grade. Yet she is so peppy! She has so much strength and such a great attitude. She knows exactly what is coming. The vomiting, diarrhea, hair-loss, headaches, feeling like she has the flu for a month, the isolation, and the possibility she may never give birth to her own child… and she is looking forward to the whole experience… She prays everyday for her own healing and for the healing of her friends. Yet she is completely OK that God has made her sick, she trusts Him completely. She completely amazes me.

We will keep you all updated as we move forward. Thank you everyone who has helped, or donated, we would have been lost (or bankrupt) without all of you! We are so grateful!
Keep praying for her, and us, for the next few months.

The Getchell’s
(Shawn, Maureen, Arik, Nora and Nugget)

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

Nora’s Trailer

Nora Getchell Story

Nora 18

Hi everyone,

I know I haven’t emailed in awhile, but we just been waiting on the doctors and the donors. The donors have been contacted and have been asked to give blood. (If you were blood tested to be a donor in the past two weeks you may be her donor!)

We are down to three potential donors now. We feel so blessed to have such choices!

Nora is weaning off her cyclosporine. The hair hasn’t fallen off her back, and her gums haven’t receded yet, but we are waiting patiently!

We were supposed to go to Sloan today but Dr. B has the flu! Since she is in no way able to be near those kind of germs we won’t be back for a week or so. It looks like we will be close to our late April/early May estimates for the transplant. Nora is hoping she can get to her friend Layla’s Cancer Remission/6 Year-old Birthday Party on April 15th.

Shawn and I have been trying our best to cross our T’s and dot our I’s. Taxes are done… CHECK! Thank you cards except to immediate family and closest friends… CHECK! Shopping for the hospital… CHECK! We are planning on painting while she is in the hospital (if anyone wants to help, you are invited!) Picked paints… CHECK!

The Frances Pope Foundation graciously offered to pay for Nora’s out-patient stay. We cannot thank you enough!!!!

Arik will be receiving his First Communion of May 12th. Both he and Nora are bit bummed that she cannot be there. But she saw him in his suit (thank you Grandma for shopping). She seems to be OK with missing out since she was able to see the butterflies at Atlantis today and saw the Lorax at the hospital last week.

We are just waiting and enjoying our days as a whole family as much as we can.
I’ll keep you all posted!

We love you all so very much!
Shawn, Maureen, Arik and Nora Getchell

Birthday

Today is Nora’s 7th birthday and it is a good one. She woke up at the crack of early, woke up her brother then jumped back in bed and demanded he wake her with a birthday surprise. So he jumped into her room and screamed, “SURPRISE NORA HAPPY BIRTHDAY” she of course had her best “surprise face” for him. 

She then proceeded to open her presents. A blanket I knitted for her (first try at knitting since I was her age) A dress, Flower wands, A skip it, A tiara, A grow bug, Glow sticks, Art supplies, A mini gorilla pillow pet and a Wheel of Fortune Scratch Off lottery ticket (sorry it was a loser). She was thrilled! She spent the morning playing with her new toys while her daddy made her bacon wrapped donuts. She asked for them, why I do not know, but since it was her birthday he obliged saying, “At least she doesn’t want a meat turtle.” (google it).

We went to church then she went to religion class with Barbara where she played chinese checkers and received a gift certificate to beacons cottage (her favorite store). Then we went to her school where we handed out cupcakes and juice boxes. All her friends were so happy to see her. They all made her cards. They are all so cute.

After school we went to pick up Grandma from the Ferry and went out to dinner to hibachi. Tai Show in Setauket it was delish as usual. THEN we went to the ice cream cottage to get her a cake. (The day was a typical Getchell eat-fest) We are all desperately need to eat salads and workout tomorrow but right now we are bloated and happy. 

Nora is doing well. She had a bone marrow biopsy on Monday at Sloan. More genetic tests went out and we should have the results in two weeks. The doctor said he was surprised to see as much marrow as he did and lowered her dose of cyclosporine. The donors are being contacted so if you get a call for more testing in the next few weeks you may be one of Nora’s matches.  

Right now we are just making sure she stays healthy. Keep praying for her.

God Bless you all.

The Getchells

Nora in Newsday

http://www.newsday.com/news/health/girl-set-for-lifesaving-transplant-1.3578145