The blister on Noras feet are not GVHD (she hasn’t started grafting yet… duh mommy has been going on little sleep) they are most likely from a reaction t the bleach cleaner they use to keep her floor immaculate. She promises to wear her slippers from now on.
Nora received her cells on October 5th at 3am. Her new donor gave her a liter! She seems to be doing well. Her energy is not what it was last year but that can certainly be attributed to 11 doses of total body radiation and 2 days of chemo.
She has been having a few complications; the rhinovirus is still in her system; constant diarrhea; mouth sores, which make it extremely difficult to eat; high blood pressure, which makes her unbelievably emotional; and possible acute graft vs. host in the form of blisters (similar to sunburn) on the soles of her feet that burn from the inside out (they may also be from the radiation so we are waiting to see if they get better). She is back on the immunosuppressive Cyclosporine which makes her hairy and makes her gums swell. All of the complications and her hair falling out is making for a tough time emotionally. She has bouts of sobbing and anger. This combined with the fact that smacked me in the face—she is probably in the early stages of puberty! To say we have gotten on an emotional roller-coaster is an understatement.
Yesterday Nora had a pretty bad fall. She was coming out of the bathroom, decided to step on the base of her IV pole and kick off using it like a scooter, when the base pushed out and the weight of 6 pumps, 5 bags of fluid, and 5 bags of medicine toppled over onto her arm and leg. Thankfully she did not hit her head, nor did the pumps land on any organs. She received platelets through the night and today you can barely see a bruise.
So that is where she is. This time has certainly been tough but she will power through and be stronger and better than ever.
A special thank you to the Columbiettes and Biodex Medical who had a blood drives in Nora’s honor, thank you to cousin Mo who put together a fundraiser in Brooklyn. Keep in mind there are two new blood drives coming up on October 13th at St. Jude in Mastic Beach and October 30th at Central Elementary School in Glen Rock New Jersey, Hosted by Girls on the Run Glen Rock Girls.
We would once again like to thank everyone who has been supporting us through this long road. Thank you from the bottom of our hearts… this road would be impassable without your generosity.
Love the Getchell’s
These past two weeks have been the most trying in my life. Nora has been a champ and continues to amaze us but the physical toll it is taking on her is breaking my heart. She underwent 11 treatments of radiation, two treatments of electron therapy, and two days of cyclophosphamide (chemo). She has spent her days with diarrhea and has been vomiting around the clock. She has lost 2 lbs already and still only eats a spoonful of broth a day before she throws it up.
The physical pain is nothing to the emotional. She is sad and homesick. She misses everything about her “old life” and has been marking all the days she will miss with tears in her eyes; Halloween at Grandmas Club, baking pumpkin and apple pies for Thanksgiving, Santa at the Property Owners, Christmas dinner with Barbara, watching the leaves change and chasing them around the yard as they fall… All the things I took for granted as a child she aches for, she is mourning her lost childhood.
She especially misses her dog Nugget who she hasn’t seen since July 4th. He is a German Shepherd, Husky, Golden retriever mix who is 12 years old and has been with us longer than she has been alive. He has cataracts and bad hips but he is her friend, dress up model, shadow, snuggle puppy and he is who she cries for all night. I hope he recognizes her when she comes home. Last year he didn’t and she was very unhappy.
Transplant is Thursday, October 3rd and we pray for her new, and well as her old, donors. We hope these wonderful men understand how precious they are to us. How much we love them. Without them we would not have our little girl and because of them, she has hope.
We are so lucky to have such wonderful friends and family who have been helping in so many ways. We are truly blessed. We wait patiently for Thursday and pray for grafting.
Love the Getchell’s
Nora had her first two doses of radiation today. She did great. She is nauseous and tired but was a champ. She stood perfectly still and it went smoothly. Last time I gave you an update, she had two donors to choose from… but in the meantime a new donor — who is a better match, who can donate marrow, is younger, and can donate earlier — was found. 🙂
She has nine more trips to radiation in the next three days, then she gets a day off. Sunday and Monday are chemo days, Tuesday she starts cyclosporine and her transplant is Thursday. Which will be followed by methotrexate and filgrastim the next two weeks. Then we wait.
Our lives are topsy-turvy right now and we really appreciate all the prayers. Thank you for being such wonderful kind caring friends and family.
Nora had a really bad bunch of bacterial infections. Because she has no neutrophils at all, she had a bacteria in her stomach that became out of control and spread to her blood. The doctors gave her low level antibiotics to take care of it but the germ became antibiotic resistant. She was put on super crazy strong antibiotics that thankfully took care of it. She receives between 10-20 different infusions and takes 6 pills a day. They range from antibiotics, antivirals, antifungals, anti-inflammatory, antihistamine, something to stop her from throwing up, a pepcid and blood products.
Her attitude is getting better. She is no longer feverish and is getting her fight back. We have also started homeschooling. She works with me from 10am-1pm everyday and then is supplemented by a tutor from 1-2pm. She has speciality instructors who rotate in on different days, from 2-5pm usually music, art, karate, yoga, physical therapy, occupational therapy, nutritionist, dance, meditation, clowns or a priest. Arik will be able to visit her every Saturday (as long as he is healthy) until transplant begins which is also a big morale booster. He is her big brother, best friend and rock.
She is allowed to walk the hall from 8-8:30pm. She does her laps and makes her nurse chase her to change infusions. Those ladies and gentlemen are the best. I cannot say enough good things about the nursing staff.
The doctors are making a decision on which donor she should use. One is a man and he can donate September 30th. The other is a woman and she can’t donate until October 25th. On one hand she rejected the marrow from the last man and same sex grafts better. On the other hand if she waits for the woman the odds of her getting another infection increase exponentially everyday… And right now, an antibiotic resistant infection or a bad virus could kill her. The team is weighing the options very carefully and have been in contact with other transplant experts around the world.
Her treatment whatever it is will be clinical as there are only a handful of children who have rejected their first donor and lived through a second transplant so no one really knows the “right way”. As Doctor Kernan said, “You put 10 transplanters in a room you come out with 20 ideas.” So they are coming up with a Nora Getchell protocol… unique just like her… Just for her. Dr. Boulad is still very optimistic that she can be cured but we have to keep in mind that she will have a large dose of radiation and a longer round of chemotherapy which will most likely affect her fertility, her growth, possibly her memory and it may cause cancer later in life.
We are so grateful to all of you who have supported us with time, prayers, money, gifts and most of all love. We love you all so much and could not be this strong for Nora without your constant encouragement, prayers and positive outlook. Thank you from the bottom of our hearts.
Shawn, Maureen, Arik, Nora and Nugget.
Nora’s port was removed. Her catheter put in. She just wasn’t really getting better. She acquired another infection and her catheter needs to be removed. She now has three IVs in her arms so she can receive the antibiotics, antivirals and blood product. She has been getting around 20 infusions a day.
Her marrow has failed.
The doctors are actively looking for a match and they have a few prospects. Right now they are trying to get Nora stable so she can begin the transplant process again. This time she will be getting full chemotherapy, and full total body irradiation prior to transplant. Last time she had a reduced dosage to try and minimize the toxicity of the poisons. Unfortunately, it wasn’t enough to kill her T-Cells.
She is not her usual upbeat self. She is angry. She is lonely. She is tired of being a lab rat.
Our goal the next few months will be to help her manage the pain and try to make her smile. She has not really been smiling at all these last two weeks. She is feeling depressed and scared. She just wants all of this to be over.
Please keep praying… I don’t know what else we all can do.
We had a busy night. Nora went into septic shock and spiked a fever of 103.7 She was transferred to NY Presbyterian for observation because they have a triage and if anything went wrong they could attend to her. The doctors think this is happening because of an infection in her mediport. Her mediport is a little disk inserted under her skin with a catheter that does directly into her heart. It is the access spot on her chest where they draw blood and insert medicine. Because the mediport leads directly into her heart, the infection in her port was quickly pushed all around her body. She is neutropenic again and have received 2 whole bloods, 2 platelets, a whole lot of fluids, antibiotics and antivirals last night. She broke the fever and we came back to Sloan this morning.
Today the doctors removed her mediport, put in a temporary catheter, and did a biopsy. There were not very many marrow cells in the sample. Her neutrophils are at zero and without transfusions, she is not making red blood or platelets. The doctors are still very concerned.
The best case is she had a bad infection in her port which really beat up her marrow and now she is going to re-graft. Worst case is her marrow is failing and we will have to find a NEW donor and do this all over again.
It’s time to pray for the best but plan for the worst. So… We need bone marrow and blood drives set up again. We need money to pay for those drives and most of all we need prayers… Rosaries, candles, chaplets, positive vibes, mi sheberakh, psalms, healing thoughts, offerings… Please! We really need you to beg God for Nora’s healing. We need a miracle.
She keeps going in to the doctor and her numbers keep dropping. Every week she gets platelets and a g-shot. She doesn’t seem to be grafting the stem cells into her marrow. The doctors are “concerned” and she will need a biopsy in the near future to get a better idea what is going on. This is really taking the wind out of my sails but she is full of life and energy. She is really so amazing.
So we are just waiting to see what the doctors say. We have an appointment on Monday and she gets pentamidine (preventative lung medicine) on Thursday. I will keep you posted on her Facebook page facebook.com/friendsofnoragetchell and on her blog http://www.norasstars.wordpress.com
Thank you for all your prayers!
Love, Maureen, Shawn, Arik & Nora
P.S. I will be sending future updates through mail chimp. I just realized that many of you may want to “unsubscribe” but feel weird telling me. Plus, they make it easier to manage replies.
There are a few inaccuracies…
First, Nora is 8.
Bone Marrow Transplants are not “surgery” she goes through a week of chemo and a day of radiation and then gets a
transfusion of bone marrow, not blood, which goes directly into her heart it takes an hour or so. The “Stem Cell Push/Boost” is a week of chemo then a syringe of Stem Cells are pushed into her heart it takes 5 minutes. Stem Cells went hrough her mediport, The Marrow went through a catheter in her chest.
The Nora Fund is a Charity to help with Nora’s expenses. It is not tax exempt. It raised $45,000 in 3 three years with $28,000 of the money earned, going toward bone marrow swabs. The rest is being used for gas, tolls, parking in Manhattan, and organic groceries. When she is well the remainder will go towards the “Frances Pope Memorial Foundation” who helped Nora and her family through-out her whole ordeal. They are angels! If you are looking for a truly wonderful charity to give to that IS tax-exempt. They are the best.
Nora is at the Ronald McDonald House in NYC not New Hyde Park. She goes to Memorial Sloan Kettering not LIJ Cohen.