All at once, the lives of Joshlyn Necaise and her family were flipped upside down with news of her dreaded diagnosis: leukemia. Although she was only recently diagnosed, Joshlyn and her mom, Janah Garriga, have been diligently seeking answers to the symptoms she’s had for almost a year.
“For the past year or so, I’ve thought that maybe she was hypoglycemic or there was something more going on. We were never able to get to the doctor and it come up in bloodwork or anything like that,” explained Janah. “Then, they said she had cat scratch fever one time in her lymph nodes underneath her jaw right at her ear. I just wouldn’t take that for an answer and kept going and going.”
In a desperate attempt to find answers after severe swelling at the beginning of February, they went to a doctor visit that would end up conducting a test and discover the real culprit behind her symptoms.
“Finally, I picked her up from her dad on Saturday, February 5. When I picked her up, all the lymph nodes in her neck underneath her jawline to the back of her head around the scalp, under her armpits, and in her pelvic area were so large that she would look up and tell me that she looked like a square. It was just terrible because she was really swollen,” recalled Janah. “I got a doctor’s appointment made for early Tuesday morning, February 8. The doctor said she didn’t really have any answers because she wasn’t sick or running fever, but her lymph nodes were swollen. She said there was physically nothing for her to treat, so she was going to run some bloodwork.”
While at that appointment, Joshlyn informed the doctor of another symptom that had been giving her a lot of trouble: her knees.
“Prior to that, Joshlyn was sitting there and told the doctor that her knees hurt her really bad. She had been complaining about knee problems for about eight weeks already,” expressed Janah. “She couldn’t really bend down, or if she could it wasn’t for long. She couldn’t get on her hands and knees to play like other 12 year olds could and couldn’t swipe her foot around because her knees hurt her so badly. Come to find out that runs hand in hand with leukemia because of the bone marrow and white blood cells being so high.”
One of the blood tests that the doctor conducted provided quick results. Those results sent Joshlyn on a whirlwind of blood tests before she was sent to Jackson.
“The doctor ran some bloodwork and said it would take a couple weeks to get everything back but that a few would come back that day. We left the doctor’s office, and I stopped by the dollar store to get some bread. We didn’t even get 10 minutes from the doctor office when the doctor called me and told me to get Joshlyn to Forest General because we were down on the coast at my parents’ house at the time. She said that her white cell count was 69 and that isn’t good because it means there’s something more,” described Janah. “I took her to Forest General, and they took her straight back and started doing bloodwork. The doctor came out and said that her white cell count had gone up to 79 and that they were going to do more blood tests and a couple of smears, but that’s all he said. When he came back in to talk to me, I asked him if he was thinking it’s cancer or something because they weren’t telling me anything and were on their third blood smear. He said he didn’t want to say anything until he had talked to a couple more pathologists and that he reached out to Jackson and a couple other places. He said they did have cancer cells in the smears. He said he didn’t know what kind and that they were trying to get all the paperwork done because they were sending us to Jackson.”
What started out as a simple doctor appointment that morning turned into an official leukemia diagnosis in Jackson by that evening. They immediately got the ball rolling on setting up treatments.
“We got into Jackson by about 5:00 that evening, and they said they had to do one more blood smear and do some more blood work. The doctor ended up coming in and telling us that she had T-Cell leukemia,” remembered Janah. “They did a spinal tap and a bone marrow biopsy by that Friday, February 11. Then, they administered the chemo into the blood brain barrier, which is like the spinal fluid and all to treat the cancer up there. We didn’t have any show up on that smear, but he told us that just because none showed up now doesn’t mean it won’t show up later. He said it’s something you’d rather treat as a precaution instead of having to start all back over again.”
She has continued fighting hard since that first treatment.
“She’s done another spinal tap since then, and we’ve been fighting with low platelets and low blood,” stated Janah. “We’ve been back and forth to get her biopsies done, do the spinal taps to administer the chemo, and get her chemo done and everything. We’re just trying our hardest to be able to function with it.”
With how fast everything moved once that first blood test indicated a raised white blood cell count, Janah finally had enough time to ask the doctors why none of this had been indicated in the past year of trying to find the source of all the symptoms. He was able to answer her question and provide her with a timeframe for how long the cancer has been active.
“I told the doctor that all these signs and symptoms have been there for the past year, and he told me that she may have had the symptoms but that everything has to come together for the cancer to happen,” said Janah. “I asked him if he could tell me how long she’s had the cancer by that point, and he said for sure about six to eight weeks. Everything finally lined up so that it showed up in the blood work.”
So much has been taken out of Joshlyn’s control because of the cancer, but her family is making sure to involve her with different decisions to create at least a small amount of normalcy in a difficult situation. They have found the things that she can control and are allowing her to make the decisions on what to do.
“Joshlyn is 12, and we try to let her have a hand in everything since she doesn’t really have control of the cancer,” explained Janah. “The only thing she really has control of with the cancer is if she wants to cut her hair because it took about a week for her to start losing her hair. We’ve had some hair loss already, but we try to let her give us input on everything we do.”
The unexpected diagnosis has left them with different needs to help Joshlyn get better. They need blood donations and appreciate all the prayers they can get.
“We definitely need prayers all the way around for all of us. We’re trying to get blood drives set up because we know it’s a two year chemo treatment. We’re going to be going to Jackson weekly for IV chemotherapy and then for spinal taps,” declared Janah. “We’re trying to get the blood drives set up because she’s O positive, and she’s going to need a lot of blood. The blood donations will basically replace the blood we’re going to have to use and all the platelets and everything. If we can get blood and platelet donations, it would really help her out.”
Some friends in the family want to assist the family financially with all of the treatments and travels. They have set up different fundraisers to help assist her.
“A friend of mine helped get started selling t-shirts for Joshlyn. We have stickers and are waiting for bracelets to come in,” said Janah. “We have a GoFundMe set up for donations to help with travel expenses, medical bills, and anything that can be used for treating Joshlyn. They told us they can’t tell me when she may have to stay in the hospital and not to be surprised if she’s ever admitted, and we don’t know how long the stays would be.”
Anyone who would like to donate to Joshlyn can do so by giving online at one of the following places: www.facebook.com/donate/260393852787678/ or gofund.me/3a58ba12.
Although she is facing leukemia herself, Joshlyn also thinks of others fighting the same battle that may not be as blessed as she is. She wants to raise awareness to help others as well, specifically those who may need a bone marrow transplant. It can be difficult to locate a match sometimes, and that may be the only thing to save someone’s life. That is why Joshlyn would really like for as many people as possible to submit samples to become a marrow donor.
“My daughter is such a selfless child. She says that this isn’t only about her but is also about all the kids there fighting that cancer. She wants as many people as possible to fill out a bone marrow swab to send in. I think you have to be at least 18 to send it in, but they send you a kit to swab yourself and send back with some information. Then, they put you in a domain to the bone marrow database that could match you to someone who needs a bone marrow transplant,” proclaimed Janah. “Joshlyn said that while we don’t need the marrow transplant right now because that would be a last option, there are other kids out there who need one and may not have the support system that she does to get the swabs. She just wants people to send in a swab in case they could help other kids fighting leukemia and need a bone marrow transplant if they are a match.”
Anyone who would like to become a marrow donor and possibly help save a life only has to follow some simple steps:
1. Go to my.bethematch.org and complete the registry of medical questions.
2. Use the swab kit the company sends you to swab the inside of your cheek and send it back to them.
3. They’ll place you on their registry after testing and logging your swab sample.
4. If you’re ever found to be a potential match, be ready to donate.
