Uncategorized – We Eat 4 Life

31Jan

What is AVN?

When Tyson was first diagnosed with sickle cell disease, I had no idea what that really meant for us. The doctors sat us down and went over the basics and gave us a really thick packet to read and that was about it. So, after reading the packet over a few times I decided to google sickle cell. What I found was heartbreaking:

Pain crisis
Stroke
Pica
Acute chest syndrome
Pulmonary hypertension
Organ damage
Blindness
Leg ulcers
Gallstones
Priapism (pain crisis in male genitals)
Immunocompromised

Complication after complication all because of the lack of oxygen in the red blood cells. A variation of the list above is what I kept seeing over and over, so I researched each one so I would be able to recognize an onset if it was to ever happen to Tyson or Jordyn. But do you know one thing I never saw AVN. I had heard some adult warriors talk about hip complications but I didn’t know why they had these problems. So, what is AVN?

-Avascular necrosis (AVN) is the death of bone tissue due to a loss of blood supply. You might also hear it called osteonecrosis, aseptic necrosis, or ischemic bone necrosis. If it isn’t treated, AVN can cause the bone to collapse. AVN most often affects your hip. -WebMD

Apparently AVN is pretty common in sickle cell patients because the sickled cells tend to block the blood vessels that supply blood to the bone. However, that was not something anyone ever told me. Nor was it something I saw on the long list of complications that come along with sickle cell. So, imagine my surprise when I took Jordyn to the hospital last Friday for a swollen knee and they told me that she had avascular necrosis in her left knee.

Back in December Jordyn had a pain crisis in the very same knee and I took her to the ER to get it looked at. They gave her some pain medicine and sent us home. Well, after her pain was gone, I noticed the swelling in her knee never went down. So, I took her back to the doctors. They told me it was just left over swelling from her pain crisis and it would eventually go down but this was normal for sickle cell patients. Fast forward to last Friday and out of nowhere her knee gets so big she can’t even walk on it. So, I rush her to the ER again, and they finally do x-rays and find out that the swelling is actually a bunch of fluid that has surrounded her knee because it is infected, not typical swelling from a pain crisis. The x-rays also showed that she has AVN on her knee.

They admitted us into the hospital that night and drained her knee. The next day she got an MRI done just to make sure what the doctors saw on the x-rays were accurate (and it was). But by Sunday her knee had swollen up again so they decided to do a biopsy on her knee. What they discovered was, the pain crisis Jordyn had in December must have caused the avascular necrosis and because that formed a weak spot in her bones the regular bacteria we have in our bodies caused an infection. And because sickle cell patients are immune compromised her body wasn’t able to fight off the infection.

The doctors felt the best plan of action was to put her on strong antibiotics and make a linear incision in her knee and clean out as much infection as they possibly could. Now prior to this Jordyn had never had surgery so to say I was nervous is an understatement. On Wednesday, Jordyn had the surgery and it went very well. She did have to get a drain put in her knee but that was removed two days after the surgery. That same day she started physical therapy.

We left the hospital Saturday evening and she is doing well. She does need a walker to get around for now and her recovery is going to be anywhere from 4-6 weeks before she is running and jumping like normal but I am more than confident that she will be fine.

THANK YOU ALL so much for your continued prayers, love and support. It really means the world to us.

12Dec

Tyson Needs A Cure

Post by Shakeira Wesley

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Hey We Eat 4 Life Family,

Tyson’s sickle cell has taken a turn for the worse. Basically his body never fully recovered after getting the flu in Dec. 2019. Even though he isn’t having a ton of pain crises, his blood work is showing that his blood has been sickling way too much and that it is causing him organ damage. We don’t know why it isn’t causing him more pain but we are truly grateful. His new doctor is recommending we put him on hydroxyurea (which is chemo) as well as a bone marrow transplant.

For those of you that don’t know, a matched sibling is the best option for a bone marrow transplant but because Jordyn also has sickle cell she cannot be a donor. We talked to the BMT (bone marrow transplant) doctor at Children’s Healthcare of Atlanta but we were told Tyson wasn’t a viable candidate to be put on the Be The Match searching patient list. His primary sickle cell doctor is trying to preserve his organs and prevent him from having any further complications or any surgeries. Although a bone marrow transplant is a cure it cannot reverse any damage that his sickle cell has already done to his body. She is a mom of a warrior and understands first hand what we are going through.

So because I had my tubes tied after I found out Jordyn also had sickle cell, the only option is to go through IVF to have another baby that will match Tyson’s HLA and doesn’t have sickle cell, so that we can use the cord blood/bone marrow to cure Tyson. We had both of the kids HLA tested a while ago and both Tyson and Jordyn have the same HLA! Which means this baby’s stem cells will be able to CURE both Tyson and Jordyn! We always wanted more kids but I just couldn’t take the chance of having another child with sickle cell and watching them suffer. Doing it this way not only ensures that we won’t have another child with sickle cell but now we can stop the suffering Tyson and Jordyn go through.

I have always been honest about how painful it is to watch my babies go through so much and many of you have asked how you can help. Well, I finally have an answer other than prayer. Please donate to our Go Fund Me so that we can pay for this IVF process. Unfortunately, IVF is not covered by our insurance, and because of all the extra testing we have to get, to make sure this baby doesn’t have sickle cell while also having the right HLA, this process is going to be very costly. This is a long road ahead of us to get Tyson and one day Jordyn through transplant. Tyreke and I would really love your help! Thank you in advance and please keep praying for us!

https://gofund.me/927ae5ff

We love you all so very much!!!

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22Dec

December 16th Pt.2

That night I slept in ICU with Jordyn and Tyreke slept with Tyson on the 5th floor. My mom stayed with me so I could go back and forth between the kids’ rooms. I needed to know what the doctors and nurses were doing but I couldn’t be in two places at once, so I thank God for my mother dropping everything to be there and support me, Tyreke, and the kids.

Because Jordyn had been unresponsive, she had lost some of her motor skills and needed to be put on oxygen. She actually stayed on oxygen almost the entire time we were at the hospital for those nine days.

The next morning Jordyn’s motor skills were already improving by the time the doctors came in to check on her. They told me that both of the kids would need to have blood transfusions. Jordyn also needed a plasma transfusion because they needed to run some more tests on her, but her body wasn’t strong enough for the tests. They also told me that one of the tests would be a spinal tap but because her oxygen was so low that she needed to be put on a ventilator in order to perform this procedure. To say I was scared would be an understatement but I had this constant feeling that God was going to take care of my babies so I trusted in Him and the doctors and said ok to all the tests because at this point, they still couldn’t tell me what was wrong with my baby.

While all this was happening to Jordyn, I was told that the blood transfusion Tyson had gotten that morning didn’t boost his hemoglobin up high enough (and it still to this day hasn’t gone up to where it used to be before all this happened) so he would need to get another one. The doctors also informed me that his spleen was enlarged. Now for those of you that don’t know this is actually really common in children with sickle cell and for Tyson to have been just a few days away from turning 6 it was really good that this had never happened to him before. I know quite a few children with sickle cell ss that have had to get their spleens taken out before the age of 5, so even in that moment I was able to count my blessings.

A Splenic Sequestration is when the sickle cells block the blood vessels in the spleen and blood can’t move freely through and it causes it to become enlarged. It is very dangerous and the doctors were hoping that another blood transfusion would help Tyson’s spleen to go back to normal. Thank God after a few hours his spleen started to go down and his hemoglobin slowly started to come up as well.

After all the tests had been run on Jordyn, MRI, MRA, Spinal Tap, and so many others with her blood and nasal passage. The doctors came back to tell me they thought it was the flu. They had already determined it was the flu for Tyson on the first night we were there but the flu test they did on Jordyn had come back negative the first time. The doctors still were not ruling out meningitis, but those results hadn’t come back yet because the spinal tap results needed more time than all of the other tests, so I was only told she had the flu for sure.

The ICU doctor told me that he had only seen one other case like Jordyn’s. It was a little girl a few years older than Jordyn that didn’t have sickle cell but for some reason the flu caused her to have seizures and be unresponsive. He couldn’t tell me anything except that they were going to give Jordyn a bunch of antibiotics in hopes that it would help her to recover.

Once she was able to get off the ventilator, they had to put her back on oxygen because she still wasn’t able to breathe on her own very well. But she was talking more and her motor skills were also improving.

By this time, we had a massive support system at the hospital with us. Our family, our friends and even our church family had come through FULL FORCE with love, prayers, food and even financial support. I have no idea how we would have made it through without the support of our village.

All of this happened on December 17th. The 18th was just a bunch of monitoring and running back and forth from room to room for me and Tyreke making sure we spent as much time with each child as we could.

When we got up on the 19th the doctors told me Jordyn was doing so good that she could leave ICU. I was so happy to get off that floor because I felt like we were one step closer to going home. Or so I thought.

The doctors were kind enough to give Jordyn the room right next to Tyson and I was so happy to have my babies close to each other again. They still haven’t seen each other (except on FaceTime) and this was the longest they had been away from each other their entire lives. So them being just a room away from each other made me feel so much better.

A few hours after Jordyn was moved, Tyson’s liver started to shut down on him. His spleen had gone down almost to its regular size but for some reason his liver wasn’t working properly. The doctors told me that he needed to be rushed to get some tests because they were concerned Tyson would need to be moved to ICU now. I called my mom and we just started praying. The kids hadn’t been on the same floor for a full day yet and now they were saying they would have to be split up again.

I went with Tyson while they did the ultrasound on his liver and held his hand. His liver problems were causing him pain and all I could think was Lord please don’t let this turn into a pain crisis. After running the test and speaking to the liver specialist we were told that Tyson wouldn’t have to move to ICU yet but they needed to monitor him very closely to make sure things didn’t get worse.

And just like that, I felt that God was still blessing us. To say that I was being optimistic would be an understatement. I knew without a shadow of a doubt that God was going to bring us out and as long as I held onto my faith, we would be ok.

16Dec

December 16th

You know I never thought it would take me an entire year to write this, but here we are a year later on the other side of two near death experiences and I’m just now ready.

It all started the third weekend of December 2019. My mom was watching the kids and called to tell me that both of them seemed to be under the weather suddenly. I immediately thought about the phone call I had gotten the Thursday before from Tyson’s teacher saying one of his classmates had the flu. Tyreke and I both decided that it would probably be fine to let Tyson go back to school because that child wasn’t going to be there and it was only one day left in the school week anyway. Well boy were we wrong.

Sunday night after picking the kids up from my mom’s house Tyson and Jordyn just didn’t seem like themselves. They weren’t running around and playing like usual and they both were really whiny. In the middle of the night they both started crying about how bad they felt so I put Jordyn in the bed with me and Tyreke went to sleep in the guest room with Tyson. They both had pretty rough nights with Tyson having diarrhea and Jordyn having a low grade fever.

The next morning neither of them really had appetites; they both were extremely sleepy and by then Tyson had a fever too. I told Tyreke as soon as Jordyn wakes up for real and not just to drink water (because that’s what she was doing all night) then we were going to take them to the hospital.

While the kids were sleeping, Tyreke and I took some time to talk and just be in each other’s company for about 20 minutes. He gets up to go check on the kids and the next thing I hear is him screaming. SHAKEIRA, SHAKEIRA COME QUICK! I jumped up and ran to the room to see Jordyn in our bed knocked out and she had soiled herself. Now if you know me then you know I potty trained both of my children before the age of two and Jordyn has never had an accident since then. So I was immediately concerned.

We tried waking her up and calling her name but she wouldn’t respond. I had Tyreke bring her into the bathroom so I could give her a bath. The entire time I was saying her name and asking her to talk to me but she only opened her eyes to look at me, she couldn’t speak. I sat her on the toilet to see if she needed to use the restroom again and she started shaking uncontrollably. I started screaming and called for Tyreke’s help. By that time he had already woken up Tyson and was getting him ready so we could head to the hospital. I gave Jordyn a bath but she still wasn’t talking to me. I was asking her my name and even her own name but she couldn’t tell me anything, she could barely stand and definitely couldn’t walk. We hurried and got dressed and left the house in a rush.

We only live about a 15 minute drive from the hospital but Tyreke was zooming so I just knew we would get there in like 10 minutes. But then as he was changing lanes to get off the exit our car STOPPED! He tried to restart it and nothing happened. Tyson was in the back seat looking so sick and helpless and Jordyn was still unresponsive with her head just hanging to the side, eyes barely opened. Tyreke jumps out the car and starts waving down the passing cars trying to get help. I’m on the phone with 911 but I’m screaming so much the lady is having a hard time even understanding me.

Out of nowhere this man, who I later find out is named Jose, stopped and told Tyreke he would take me and Jordyn to the hospital. Apparently he was on his way to see his grandson being born so he was headed in that direction. I hung up on 911, grabbed Jordyn out of her car seat and jumped into the front seat of the mans pick up truck. Tyreke stayed behind with Tyson because there wasn’t enough room for all of us.

Jose gets us to the emergency room in no time. He was driving like he knew us and completely understood what we were going through. I jumped out of his truck with Jordyn in my arms and said thank you as I was running into the emergency room doors.

When I got inside all I could do was yell out “ SOMEBODY HELP ME MY DAUGHTER IS UNRESPONSIVE AND SHE HAS SICKLE CELL”. They rushed us to this room and laid her on this big table. Nurses and doctors and so many people surrounded Jordyn that I could barely see her. I called my mom to tell her what was happening and texted my ride or die sister praying crew. The doctors were hooking Jordyn up to all these different IV’s and trying to get her to talk. She started grabbing at all the cordes and was screaming no no no. I was a little relieved because up until then she hadn’t spoken any words but I was still scared out of my mind. I was trying not to show it because I felt like I needed to be in control to be the best for Jordyn and to make sure I knew exactly what they were doing to her. They did X-rays and rushed her down for a CAT- scan. By that time they have given her some kind of medicine and a ton of fluids. I looked up and my mommy came busting into the room. I have no idea how she got back there or how she got to us so fast but that didn’t matter. She was crying and asking about Tyreke and Tyson. She immediately anointed Jordyn and I told her I needed her to go get Tyreke and Tyson.

Tyreke and Tyson were still on the side of the highway this entire time. He was trying to call people to see if they could pick them up and he was trying to get the piece of crap (I want to say something else but my mommy is going to read this) car towed. Because we left the house in such a rush we forgot to pack the kids bags, so Tyreke was on the side of the road with nothing. We always and I mean ALWAYS pack a back for the kids. It consists of water, snacks, hand wipes and Clorox wipes. From what Tyreke told me, Tyson was extremely thirsty and looking sicker by the minute. My mom eventually made it to them and brought them to the hospital.

By the time Jordyn got put into a regular room in the ER, Tyson was already in a room, so they put them in side by side rooms. My village started showing up even though I told them not to. They didn’t listen and I’m happy they didn’t. It felt good seeing their faces. The doctor finally came in after running tests on both the kids and he told me he thinks Jordyn has meningitis and also had several seizures. He also said she needs to be moved to ICU. I walked over to Tysons room and he told me Tyson also has to be admitted but he doesn’t have to go to ICU. However it looks like he will definitely need a blood transfusion because his hemoglobin was extremely low.

My mom was going back and forth from room to room praying over the kids and just before we were about to go to ICU with Jordyn I looked at her and asked her one more time if she knew who I was. She opened her eyes and said “ Mommy”. I broke down, I wasn’t sure if I’d ever hear my baby say that again. I went over to Tyson’s room to have Tyreke ask her the same thing and she recognized him too and my mom. I think it was in that moment that I knew no matter what we were about to go through God was going to be with us and we would make it out on the other side of this. All four of us!

24Sep

Tyson’s Health and School Update

Post by Shakeira Wesley

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Well, Tyson has been in Kindergarten almost two months and I couldn’t be more proud of him. As you all know he and Jordyn have been at home with me since they were born. Tyreke and I felt it would be best for their health if they stayed at home and because I’m a former educator, I knew homeschooling wouldn’t be a problem.

Before school started Tyreke and I were pretty anxious about Tyson starting school. Not only were we concerned about all the new germs he would be exposed to, but we were really concerned about his teacher not recognizing certain triggers that could potentially throw him into a crisis. Needless to say we did a lot of praying and asking God to guide us through this process and to be with the teachers and administration at Tyson’s school. We chose to put him at the school my husband used to teach at because not only did we know a lot of the staff, we know they are amazing at loving and caring for the children. We understood that with Tyson having Sickle Cell he needed to be in a school that wouldn’t mind going the extra mile.

About a week before school started we found out that they placed Tyson in a classroom with a teacher that has a daughter with Sickle Cell. I was so overwhelmed and appreciative that I burst into tears. For the administration to think about us enough to make sure he was with someone very familiar with the signs of pain and the many complications Sickle Cell can bring, was nothing but a blessing.

Tyson loves school and looks forward to going every day! He has had a very smooth transition from being homeschooled academically, however that has not been the case for him health wise. The very first day he came home with his hands hurting and it seems like there’s been a new pain crisis every week. He has even had to miss two days already, one from a low grade fever and one from a pain crisis. He is extremely tired all the time and he’s struggling getting adjusted to this new schedule. Heck, we all are. I’ve been trying to figure out what works best, trying new things and switching up our routine. And it seems, giving him a bath as soon as he gets home is helping with the germ issue. But now I’m trying to figure out what I can do about these crisis. I will say they aren’t nearly as painful as the ones he used to have and they only last a day if that. Also these last three weeks he hasn’t had any pain so hopefully the pain really was his body going through an adjustment period. I’d still love some advice, so if any of you have kids with Sickle Cell already in school I’d love to hear the things you all are doing to keep your children at their best health.

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16Jul

Vegan Lifestyle

Post by Shakeira Wesley

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Well guys the Wesley’s are VEGAN!!! For the past ten months my family has been vegan and I must say it has had an excellent impact on not only the kids’ health but mine and my husband’s as well (he’s lost over 35lbs).

Our journey to becoming vegan started back in 2017 after Tyson had that crisis and was in the hospital for 4 or 5 days. After that I sat down with my husband and told him that I thought it would be best for the kids’ health if they stopped eating meat. We believe we are fighting Sickle Cell as a team, so my husband and I decided to go vegan as well. I was aware that meat causes inflammation in the body and because of that it can affect the blood vessels and affect the flow of blood. I also knew we loved meat (especially me being from the Midwest, I could live off meat and potatoes) and would have a hard time cutting it out completely cold turkey. My goal was to be completely vegan by August of 2018. That way I would have just about a year to say goodbye to my beloved meat. So I started gradually by only cooking meat for dinner. Then I cut back to only cooking it a few times a week. We did this for a while and eventually I stopped cooking meat altogether. We did however still eat it if we would go out to a restaurant, or to our friends and family houses. But I began to notice that after not eating meat for a few weeks or even a month and eating it again the kids would have pain crises. So in September of 2018 we stopped eating meat completely. Yeah I know I missed my goal by a month, I told y’all that this was hard for me.

The kids went pain free for several months but, when the weather turned cold in January both of the kids had a crisis at the same freaking time. I was a little discouraged at first I can’t even lie. But then I began to notice that not only were they not in as much pain as before, their crisis were only a couple of days as opposed to 6-8 days. Again last month Jordyn had another one but it didn’t even last a full 24 hours. Tyson has been having them more in places he’s never had them, like his hands, the bottom of his feet and even shoulders ever since he started playing drums, so my husband and I are trying to figure out exactly what to do about that.

Other things I’ve noticed since going vegan is that the kids have more energy, even though I didn’t think that would be possible. My husband and I are definitely feeling a lot healthier as well. I have had more energy too. I used to get so tired around the middle of the day I could barely keep my eyes open but that almost never happens now. I’ll be sure to keep you all posted on how our vegan journey is going, but for more specific details on our diet go the Wesley Diet page here on my website. I’m also thinking of sharing some of my vegan recipes, so leave a comment below if that’s something you’d be interested in.

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24Jun

I’ve Been Exhausted

Post by Shakeira Wesley

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I’ve been exhausted! I’ve been exhausted physically, emotionally, spiritually, everythingly. Yes I definitely just made a word up but stick with me on this. Having two children with a chronic disease is so hard. I’m constantly giving vitamins, monitoring water intake, reading labels, trying to make vegan food fun and delicious (oh btw we are vegan now, more to come about that later), homeschool them and so much more all while trying to make sure they live “regular” lives. Don’t get me wrong I love being a mom and I love being a stay at home mom even more so I’m not complaining. I know my babies are blessed and we have been able to avoid most of what Sickle Cell can really do to the body. I am so grateful for our experiences and the lack of experiences we’ve had or didn’t have. But I am tired!

I want We Eat 4 Life to be helpful and inspiring but I don’t think I can do that without sharing with all of you how hard this journey has been for me. There are so many things I struggle with, mostly unanswered prayers and questions but the weight of it all is extremely exhausting. I am slowly making changes in my routine to help me manage it all much better because We Eat 4 Life is so much bigger than me or even my children. I want to help everyone with Sickle Cell live a life with minimal pain/complications.

So with all that being said I’d love some feedback on things you guys would like to see more of. Maybe see some new things on here I haven’t done before. Please send me your ideas and thoughts so I can rebuild WeEat4Life to last a lifetime. Looking forward to hearing from you all. Thanks for all the love and support.

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09Jan

Family Update

Post by Shakeira Wesley

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Last year was a whirlwind of events for our family. We experienced some really high moments and some really low moments. We received amazing support from our friends and family. But we also had a couple heart breaking, faith shaking (but never broken) moments.

At the top of the year in January, Tyson was rushed to the emergency room with a pain crisis for the first time in his life. Every other crisis before had never been so severe that we couldn’t handle it at home. So needless to say my husband and I were very nervous. When we arrived at the ER and told them he was having a crisis and that this was his first time needing to come into the ER for pain the doctors were baffled. He was quickly attended to and given Toradol (a stronger Motrin) and Hydrocodone. After about 30 minutes, he was feeling much better and by the grace of God we were able to go home that night.
I would like to add that it was a little bit of a battle with the doctors on what medicine to give him. They initially wanted to give him Morphine but I wasn’t comfortable with that, so they begrudgingly gave me other options. If you don’t feel comfortable with something the doctors are doing or saying, you have the right to speak up and ask questions. No one knows your babies like you do!

Unfortunately, that was not Tyson’s only time going to the ER last year. In June a few days before Father’s Day Tyson was showing signs of a stroke. We rushed him to the hospital. When we arrived they immediately ran a bunch of tests on him and gave him a MRI. Luckily, the MRI didn’t show he was having a stroke but the doctors still weren’t sure why his speech was slow, they kept us a few days (yes, we spent Father’s Day in the hospital) to run more test and to do an MRA to get a better look at an artery that looked concerning to the doctors. After running a ton of tests, they determined that he was having a crisis in his jaws and that’s why his speech was slow/slurred. Five days later we walked out of that hospital with normal TCD results and full of joy.

Last year wasn’t all bad though. We received a tremendous amount of support from our family and friends at the Sickle Cell awareness walk in April. We had about 20 people come out and support us and it absolutely melted my heart to have so many people show my babies that kind of love. Jordyn also had a really good year, not one ER visit and her hemoglobin went all the way up to a 10.2!! And after that mess in June with Tyson we didn’t have to take him back to the hospital for any kind of emergences. We did start Tyson on an “herbal medicine” called Evenflo but I’m not sure if it has made any major changes for him, I’ll be sure to keep you posted on that.

Right now, the kids are doing wonderful. I’m doing my best to keep them bundled up in this cold weather, I am still giving them all their vitamins & minerals and folic acid every day. Jordyn’s hemoglobin did go back down to a 9.5 but I am hopeful that it will go back up again. Tyson’s hemoglobin went up to a 10.8!

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23Jul