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

Advertisements

Nora got her cells

Nora had a really tough week on her ATG chemo. The first day started with a fever, headache and a spike in blood pressure, the second day she had a nosebleed, the fourth day she threw up all day, the fifth day she had another fever and headache. The morning of her boost she also had a fever. They gave her an antibiotic called Zosyn, in less than 5 minutes, her eyes hurt and vision went blurry; her feet were tingling, her lips and hands swelled, she got a rash all over her body and she couldn’t breathe. The team rushed in stopped the antibiotic, gave her a steroid shot, Benadryl, Tylenol and hooked her up to oxygen. It was really scary but she fought through like a champ.

She got her stem cells at 4pm on July 29th and was a bit nervous. She is really hoping this time it will work but she is still worried about graft vs. host which makes her cry whenever she thinks about it, so we are always quick to change the subject. She said when the cells were pushed through her port the cells tasted like asparagus, cabbage and ginger. I wonder if her donor ate them for dinner the night before he donated!

Her donor, our superhero, donated a massive amount of stem cells again, enough for three transplants. The doctors gave her a double dose today. They have enough left over and on ice just in case she needs another boost in the future.

An hour after the stem cell transplant she started to perk right up. She started to get her sparkle again. The greyness under her skin is starting to fade. They will stop the Benedryl tonight and we will wait to see how fast she grafts.

Arik really wants her home. He has been sleeping in her bed and taking care of her stuffed animals, constantly asking when he can see her. I think he is the greatest brother in the world. This has been really hard on him and he has been wonderful. He has become so compassionate and empathetic toward other ill children… he is turning into quite a fine young man.

We have such wonderful friends and family who have been generous with their love, blood, time and money helping us get through this tough time in our lives. We are forever grateful. We love you all so much.

Please keep the prayers coming. Her counts are still vey low and she is still very susceptible to germs. She cannot have visitors except for Shawn and myself until she begins to graft. We hope and pray everyday that she begin to heal.

Love the Getchell’s
Shawn, Maureen, Arik, Nora & Nugget

20130729-194725.jpg

Nora update

Hi Everyone,

Nora has been having a bad couple of weeks.

Her platelets have dropped to 28 (should be over 200), red cells to 8 (should be over 12) and neutrophils to .9 (should be 2.5) Her lymphocytes are up to 50 (should be around 20) and the doctors have ordered another bone marrow biopsy for Monday. Nora is bummed about her back being drilled but she is happy to go to Ronald McDonald again.

The doctors are talking about another possible round of AGT to destroy her T-Cells and a Stem Cell Boost from her Donor —or— a round of Chemo to kill her B-Cells and a Stem Cell Boost from her Donor. Which treatment we go with will depend on which cells are rogue. Both treatments are in clinical trials so we are not happy with the lack of research and long term effects.

We should have more information next week. Either way, it looks like we are in for a few more years of treatment. We are frustrated, scared and angry but have faith that she will get better.

Please pray for her healing and for her donor as he will have to go through harvest again — if he agrees to donate. Pray that he does!

Love the Getchell’s
Shawn, Maureen, Arik, Nora & Nugget

20130710-214539.jpg