Update

Hi everyone, 

It has been a really long time since I sent an update. Nora is doing amazing! She is back in school and making friends. She just had her 10th birthday party! Can you believe it! We are so overjoyed by this. In May of 2011 when Nora was diagnosed with Very Severe Aplastic Anemia she was given a slim chance of making it to her 10th birthday. We are coming up to 4 years post diagnosis and she is beating the odds in every way. She is our miracle. Look at the picture of her with her classmates at her birthday party. 🙂

I’m writing this update for a few reasons. Nora is beating the odds and as our biggest supporters, I am sorry I haven’t sent emails on a regular basis. But with our life getting back to normal the work, school and fun has made us quite busy and I no longer need to use theses letters as therapy! AMEN!

I am also writing because Nora has an MRI on April 1st and we need all the prayers you can muster. Her liver has had high levels of iron and the phlebotomy’s don’t seem to be lowering those counts fast enough. So the doctors want to see if the iron is causing damage to her liver. Please pray she has a clean liver for this test. Nora is supposed to go on her Make-A-Wish trip this April and I don’t think she could take it if it was to be cancelled again. 

The second purpose of this email is to let you know about Kevin Cowley. Kevin is Nora’s second donor! He lives in Minnesota and he is married to a wonderful woman, Erika, and they have two little boys. We have been chatting via email, on Facebook and on the phone. Nora asked Kevin if he had ever been to New York and he said, “He has never been to New York  or seen ocean!”  I know to those of us who live listening to its waves think that concept is unbelievable, but its true! Here is a picture of Kevin and his family. How cute are they? Now we know where Nora gets her new hair color!

Also, Nora really wants to meet Kevin this July. We have been looking into flights for his family from St. Paul Minnesota to New York JFK (Non-stop because his kids are both under 3). Also we have been looking into accommodations for him to stay. (Because we live in a matchbox of a beach bungalow that puts Manhattan Apartments and the small house movement to shame.) So we are looking for either donated air miles (Delta) for Kevin and his family to come to NY. We also need a donated beach house from July 8th-16th. Or monetary donations so we can help pay for the above. We have priced about $5000.00 for a total trip. $1588.80+tax for the roundtrip flight for 4 and $2971.40 for accommodations in Mastic Beach, plus food and maybe a rental car. 

If you can, any amount would be appreciated. Nora would just love to meet Kevin. Checks can be made out to: Nora Getchell, PO Box 89 Mastic Beach, NY 11951. Or an online donation to her gofundme site. http://www.gofundme.com/friendsofnora

We are so blessed to have Nora well and with us. We are so excited to meet Kevin Cowley, a selfless man who gave his own Bone Marrow to save our baby’s life. Without Kevin, Nora would be in heaven.

Please continue to pray for Nora and our family. Also, please pray for Kevin and his family as they are the type of people we all aspire to be like. May God hold him in the hollow of His hand. 

Love Always, 

Maureen, Shawn, Arik, Nora, Nugget and Bob (the fish) Getchell

Help Nora Meet Her Donor!

Nora wants to meet her donor Kevin Cowley this July and have him come to Long Island. We need to raise $5700.00 to pay for his family’s flight and accommodations. Will you please help us?

http://www.gofundme.com/friendsofnora

To both Nora’s donors.

Words cannot express how much we love you.

Nora’s second donor is from Minnesota

We got a call from the registry that Nora’s donor wanted to meet her so we gave them our contact information. I received his email, phone number, address and name. Will keep you posted. 🙂

Noras første donor er fra Norge!

Hei Nora første benmargsdonor. Jeg bruker google translate til å skrive denne meldingen så jeg beklager for eventuelle feil. Min vakre datter fikk benmargs den 24. mai 2012. Du holdt henne i live i over et år. Når man donerte en andre gang. Vi visste at du er den snilleste og mest fantastiske mann. Vi ber for deg og din lykke hver dag. Nora trengte en tredje transplantasjon, og det ble mottatt fra en mann av norsk kulturarv her i USA. Vi bor i nærheten av New York City i USA. Jeg håper en dag vi kan møtes. Vi har blitt fortalt at vi må vente tretti år før vi kan fordi den norske regjeringen ikke tillater givere til å møte mottakerne. Vi vil bare at du skal vite, vi elsker deg så mye. Vi ber om din største lykke og håper en dag vi skal møtes. Nora er godt, og du kan se oppdateringer fra henne på denne bloggen og også på facebook.com/friendsofnoragetchell. Fred være med deg.

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.

Hi it’s NORA

Hi I’m writing my own blog now. I have been doing great since my mom’s last post. I came home from Ronald for good around New year’s. My puppy was so excited to see me. I have been a little sick but not much. My antibodies dropped a bit in December so I needed ivig for ITP which is low platelets. My body still kind of kills my platelets. I have had pentaminie so I won’t get pneumonia. Other than that I am doing really well. My mom and brother both had strep and I didn’t get it. So my immune system is working.

I’m still homeschooling and my teacher comes two days a week. She is very nice. Feb 10 th was my big best  brother 10 th birthday. He went to see the Lego movie and hibachi. I watch movies all day long. We went to Ronald McDonald house cause of the snow storm. When I came home we had a water fight in the house. Mom swert me in the face with water I went in to my room to get dressed I looked for my swimsuit but it was packed up for the summer so I came out in my underwear. My brother laffed at me then we watched the sword in the stone with king Arthur. The next day I made breakfast for the family I made toast and bacon we were out of eggs then I made my bed and cleaned my room then I started to write this.

Chugging along

Nora is now at day 65 post transplant. She is coming along. She hasn’t needed whole blood or platelets. She is still getting IVIG which are antibodies from donors. Her neutrophils are a little above normal but thankfully her lymphocytes are low. Her hemoglobin is in the normal range and that makes us very happy.

She is weaning off of the steroids which is really helping her mood. Her cyclosporine level continues to fluctuate so she still has to go in and out of the hospital two to three days a week to check its toxicity. Besides her occasional high BUN the rest of her numbers look good.

Nora has been walking a little each day which is making her stronger and stronger. She is not 100% but she is getting there slowly but surely. She begins occupational and physical therapy in the next week which should really help. She is also seeing the psychiatrist to help her deal with her anger and sadness. As she weans off the steroids, she should see an improvement but I want to make sure the stress of the bone marrow failure, as well as the loss of a few good friends isn’t overwhelming her emotionally. She is the toughest kid I know, but she certainly has every reason to be pissed, I’d just like her to do it in constructive ways.

We did sneak out of the Ronald McDonald house for Thanksgiving and Nora saw her dog Nugget for the first time since July 4th. They were both so completely happy to see each other. They just laid down together and snuggled for hours. He also slept in her room and wouldn’t leave her side for the two and a half days we were home.

We are still at the Ronald McDonald house and will be here well into January. We thank you all, especially the team at Memorial Sloan Kettering, the Ronald McDonald house, Brookville Country Club, the Frances Pope Foundation, the Mastic Beach Property Owners Association, many chapters of the Knights of Columbus our churches the Shrine of St. Jude Roman Catholic Church and United Methodist of Readfield, and especially, our friends, and our families for their financial, emotional and spiritual support through this whole stressful chapter in our lives. We certainly wouldn’t be able to survive without you and thank you all from the bottom of our hearts.

Many of you have asked if you can get Nora a gift for Christmas this year. We certainly appreciate your kind a loving sentiment. We ask that you instead make a donation to any of the above mentioned charities or your local church. The work they do on a local level is extraordinary and until you see it for yourself, is incomprehensible.

We wish you all a Merry Christmas and a Happy New Year. May 2014 be the year Nora is healed.
With all our love,
The Getchell’s
Shawn, Maureen Arik, Nora and Nugget

Day 18 and then some

On day 18 post transplant, Nora began grafting. Her ANC began climbing and she is beginning to head on her way to normal-ish. The problem with grafting—which we want— is the fear of graft vs. host disease. GVHD is when the donors cells attack Nora’s body. She has a rash which is covering her entire body and we are very concerned.

She had a skin biopsy and it was confirmed she has acute graft vs. host disease on her skin. We are treating it with steroids and steroid cream. The rash wasn’t only because of the GVHD she also had an allergy to ambisome an antifungal and her body also stopped sweating. Once we took her off ambisome slathered her with steroids and she finally sweat, the rash seems to be under control.

But we have two new issues. First, Nora has extremely high blood pressure most likely from the cyclosporine (immunosuppressant) heparin (blood thinner) lasik (diuretic) and Zofran (anti nausea) which make her electrolytes wonky. Sometimes she loses potassium, sometimes too much, same with magnesium and glucose. The team is working on getting the combination right.

Our other issue is depression. Nora is having a very hard time emotionally. Benedryl if used daily will block your pleasure receptors in your brain. Same with Ativan an anti nausea medicine. We have taken her off the Ativan and have reduced Benedryl to only when she gets blood product (every three days). That should help along with adding an anti nausea medicine that also helps with anxiety to stop her mood swings from angry to sobbing. Hopefully by next week she will be more like herself. She really misses her friends and family.

The good new is that she is making some blood. Her white cells and ANC are both really high and they have stopped the medicine to stimulate their growth. She is doing it on her own. She now needs to raise her red blood and platelets into the normal range so we can begin to discuss when we can leave the hospital and go to the Ronald McDonald house.

The itching has subsided so we hope to begin homeschooling again this week. Her brother Arik is finally allowed to come and visit as long as he wears his isolation gear and is well. That hopefully will brighten her spirits.

We cannot thank enough the good people who take their time to help us and our family. The generous outpouring of love is so overwhelming. So many people give of themselves, their time and money, some we have never even met. It is such a gift to know the world is so full of such warm and giving people. We always had this immature feeling that asking for help is a weakness, but recently have learned that it is truly a blessing. We get to experience this love and because of our “weakness” others are able to give their love. Which is everything! We never truly understood the Beatitudes until experiencing this… The meek surely do inherit the earth… In an outpouring of love. What could be better!

We truly are humbled. Thank you. We love you all.

Today’s a good day.

Her fever broke. She is on her way to engraftment. White cells .7 ANC .3