Noah keeps positive attitude while battling leukemia

Tuesday, August 14, 2012

Noah Cook, 15, is looking forward to returning to his home and spending time with his friends and family. When he went to the doctor in April, Noah had no idea he would not be enjoying his usual summer of hunting and fishing. Noah is recovering from a bone marrow transplant he underwent on July 20.

Noah Cook and Dr. Inaba at St. Jude

Instead of a carefree summer as usual, Noah has been fighting a battle with cancer. He was diagnosed with Acute Myeloid Leukemia (AML) on April 6.

Noah, the son of Tommy and Andrea Crawford, will be going into the 10th grade at Buffalo Island Central High School.

Noah started having problems with his gums swelling and hurting, but he thought it was from his braces. However, they did get worse. Andrea called the orthodontist on Thursday afternoon but Noah could not get an appointment with the doctor that day but said Noah could come to the Paragould office the next day. The orthodontist said he had not seen anything like it and Noah needed to be seen by his regular dentist. Because it was Good Friday, they could not get an appointment that day.

Noah's mother drove him to the emergency room at the Arkansas Methodist Hospital in Paragould and was seen by a nurse practitioner. They heard the news no family wants to hear.

"At that point, I knew something wasn't right," Andrea said. "It was just a little bit later when they came into the room and asked me to come out because the doctor wanted to talk to me. I sat down and four or five nurses and doctors came into the room and informed me that my son had leukemia. It was like a nightmare. I thank God every day he put us in that nurse practitioner's care that day."

Noah was put into an ambulance immediately and transported to St. Jude Children's Research Hospital in Memphis.

Noah had been seeing his local physician and was treated for recurring thrush mouth.

"The doctors at St. Jude said his mouth swelling was typical leukemia mouth," Andrea said. "Looking back, I see where Noah was acting tired, but he would stay up late reading a book and he always wanted to finish the chapter. Only a couple of times did he have fever and it was around the cold and flu season. We were told by the doctors here there are really never any signs to let anyone know their child has leukemia. Any signs they may have are like the common cold/flu and you never really pinpoint it as leukemia. I beat myself up for a while thinking there was something I missed and the doctors tell me that is very common. Most parents feel like they have missed something just simply because there really are no outstanding symptoms."

St. Jude wasted no time starting Noah on treatments. Noah had two rounds of standard protocol treatment (three different chemo types rotated back and forth for about eight days) chemotherapy and at that point the doctors decided it wasn't doing what they needed it to do and they switched him to experimental protocol treatment. Noah had one round of IV chemotherapy. It consisted of a very high dose chemo and one of the prior high doses from the standard rotated back and forth for about eight days. He then took an oral chemo pill for three weeks. The doctors said he was the 28th person to take this pill. After that he then went to the transplant unit where he did two days of another different high dose chemo and four days, two times a day for an hour each of radiation.

Noah underwent a transplant infusion on July 20. Luckily for Noah, he has a very common marrow type and it was easier to find a donor. It took about a month to find a donor and he was told the donor was a 24 year old man from Germany.

"I think that is amazing," Andrea said. "There are not very many 24 year old men willing to go through what this man went through for Noah. Doctors said that since Noah had to receive the actual marrow product, it was not simply like giving blood. They had to go in at his hips and draw out actual marrow, and since they can only draw out 5 m. per syringe, they calculated he would have been stuck 200+ times.

"God bless that young man. You have to wait a year before you are allowed to meet your donor and even at that point it is up to the donor whether he or she wants to remain anonymous or not. Right now, we can only send thanks through letters or cards by giving it to the nurse transplant coordinator who then passes it along through the donor bank."

Noah has been extremely strong through his ordeal. He keeps his family strong with his positive attitude. The nurse practitioner said she knew he was going to be okay when he was asked what he wanted from home to take with him to St. Jude, and he answered, "My bible." Noah has said all along he is going to be just fine.

"I always tell the doctors and nurses that every mother thinks their child is the greatest no matter what their faults are, but I believe in Noah's case it is just fact," Andrea said. "He is a super great kid and always has been. He is loved by many young and old and they all have come together throughout his journey and shown him an overwhelming amount of support. We have been blessed to be a part of a wonderful community who has come together to help us. There will never be enough words to tell everyone how extremely grateful we are for all that they have done. We thank everyone for all of the fundraisers, donations, and prayers. We will always be grateful for the love and support everyone has shown for Noah."

The family is staying at the Target House. It is built for families with children undergoing treatments at St. Jude.

"They have built a really nice place for children while they are unable to go home," Andrea said. "We have a little two bedroom apartment that we have shared since April. There is no place like home but it is a very nice place to stay when you can't go home.

"St. Jude is an amazing place and they have thought of everything to try to make children comfortable and happy. Target Corporation built these two buildings for families and they have rooms in each for the children to be able to go and play. There is a playroom, playground, and arts and crafts for the younger ones. There is a teen room for the teens to get away. No parents are allowed. Most every room has two or three video game consoles and video games, pool tables, and computers. These rooms have been donated by people like Amy Grant, Brad paisley, Tiger Woods, Shaun White and others."

Noah is counting the days. He will have to stay in the Memphis area at least 100 days after the transplant with July 20 being day 0 and counting.

Anyone who would like to send Noah a card or note can do so. The address is Noah Cook, at 1811 Poplar Avenue, House 1, Room 204, Memphis, TN 38104 or his home address is 4504 West County Road 122, Leachville, AR 72438.

Noah is on Facebook and Skype. There is a Praying for Noah Cook and family page on Facebook that his mother keeps updated.

Visitors will be limited since the transplant while his new immune system is building up.

"As the doctors put it, he has a newborn baby's immune system right now," Andrea said. "Every sickness he has ever caught before, he will have to catch again. All vaccinations he has had will have to be repeated. It is very important for him not to be around anyone who is sick. It will be awhile before he is able to return to public school."

Noah and his family are having to take things one step at a time.

"We get used to hearing good news and we tend to forget about some of the bumps in the road that may arise like today," Andrea said. "During the next 100 days and for months to come after the transplant, you still have the worries of needing your body to accept the new marrow, not wanting the new marrow to spread too quickly and take over causing graft versus host disease and attacking organs, etc., not wanting any trace of leukemia left behind having the ability to spread again.

"Noah received news today (Monday) there were still traces of leukemia found in some portion of his marrow test last week. Now, we eliminate an immune suppressant that he has been on hoping that the new marrow attacks any traces of leukemia still in his body, but not to cause GVHD.

"He still has a ways to go with this transplant process. A lot of people think once you receive the bone marrow transplant all your worries are over, but really, you're just starting a new set of them. So, again, this is something we hand over to God and keep our faith in believing that He will heal Noah."

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  • This was a wonderful story, Revis. St. Jude's is a great cause.

    -- Posted by on Wed, Aug 15, 2012, at 11:08 AM
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