Family Update

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!

Our Story Pt.II

Could this child be our cure?! If I’m honest, that was the first thing that ran through my head when I found out that we were pregnant again. I even began to feel like I got pregnant so soon because God didn’t want Tyson to ever experience the hardships of Sickle Cell. So now he’d be able to have the bone marrow transplant and live a regular life. We believed it so much that we even decided to bank our daughters cord blood. So when we got the call about a week after Jordyn was born that she too had Sickle Cell Disease SS my heart broke.

We decided to put Jordyn on the same regime as Tyson. And at her three month check up she was doing good. Her hemoglobin was a 9.5 which scared me a little because Tyson’s had never gone below a 10.5. The doctors assured me that even though Jordyn’s was a little low, 9.5 was still really good. They did warn me that her hemoglobin would surely drop and never increase.

A few months later almost two weeks after Tyson’s 2nd birthday he had his first pain crisis. I was so confused! At his appointment his hemoglobin was an 11.4 and this entire time I was under the impression that if his hemoglobin was high then we wouldn’t have to deal with pain crises. After speaking to his doctors we were informed that, pain crises can happen at any time even if the hemoglobin is high. I felt helpless. They didn’t seem to have any answers. They gave us medication to help with the pain. However the only option they offered that would “help” was Hydroxyurea also known as “chemo” and that was NOT an option for us.

So I began to do more and more research and I found out that a lack of oxygen in the blood vessels can cause blockage in turn causing a pain crisis. That’s when I decided to give Tyson chlorophyll. Liquid chlorophyll to be exact. It helps to replenish the amount of red blood cells in the body and it improves oxygen circulation in the blood. Almost everyday Tyson started getting liquid chlorophyll, and because I was breastfeeding Jordyn I started taking it so she could receive the benefits of it as well. And at her last doctors appointment her hemoglobin went up to a 9.8!

Tyson’s pain crises were less frequent but he was still having them. They were always in his arms and almost always started in the middle of the night. That’s when my husband brought to my attention that Tyson would often sleep on his arms and that can cause low blood circulation for anyone. But because of Tyson’s condition he couldn’t just shake his arms if they had “fallen asleep” and be back to normal. So we put a pillow in his bed for him to sleep on and saw a drastic decrease in his pain crises.

Today Tyson and Jordyn both take a multi vitamin with essential minerals, vitamin C, vitamin D and I have just started giving them beet root powder, in addition to the liquid chlorophyll and the folic acid daily. I still give them the penicillin prescribed by the doctors, but I don’t give it to them everyday. Antibiotics can kill your body’s good bacteria and if taken over a long period of time can permanently wipe them out. Which will affect the body’s ability to build up immunity.

As of today, Tyson has not had a pain crises in almost 4 months and Jordyn has never had one.

Our Story Pt. I

About a week after my first child was born my husband and I got some of the most devastating news ever. "Your son has Sickle Cell Disease SS". In that moment I understood it was bad, reflecting on a project I had chosen to do in the 8th grade on Sickle Cell Disease. But I didn't realize the magnitude in which this would shape and change not only my son's life, but mine and my husband's as well.

Right away the doctors wanted to start Tyson on medication every day twice a day and an additional vitamin to help with the reproduction of his red blood cells. And so we followed the doctors orders and quickly noticed that the medicine was causing him to poop constantly. I mean up to 8 times a day. When I expressed my concern all I got in return was " Are you sure it's not anything else? The medicine is known to help with bowel movements but nothing like that." So me being the very attentive mother I am and knowing for a fact that it was without a doubt the medicine I started giving it to him only once a day. And sure enough he stopped pooping so much. I think this was the first time I realized that I would have to do things a little different than the doctors wanted me to in order to make sure my son wouldn't have the typical Sickle Cell experience.

So right away I started doing research. I mean I read anything I could get my hands on about Sickle Cell Disease. And I'm not going to lie it was scary. From constant blood transfusions to early death. So immediately I started looking at cures. I knew from my project back in the day that there wasn't one, but I was hoping that because so much time had passed that maybe they had found one. Unfortunately the only cure they had discovered was a bone marrow transplant. And in order to have a high risk of success it would need to be a sibling. Well that wasn't happening anytime soon (so I thought) so I moved on to other options. The only thing that seemed promising was food choices and I had already decided to breastfeed my son.

So at our 3 month doctor visit (we go every 3 months to check his blood and run other tests) my husband asked about food and how it could play a part in helping Tyson's experience with Sickle Cell Disease. And they told us "just eat a healthy balanced diet like anyone else." Now I know what your thinking... Three month old babies can't eat food! And you are right but we wanted to be prepared, extra prepared. So when it came time for him to eat, I decided to make his baby food at home. All organic!

At his 6 months check up Tyson knocked it out the park! His hemoglobin was still high (around 10.8) and he wasn't having any complications. So again my husband asked about food and diet and how that could improve or positively affect Tyson's experience with sickle cell disease. And again the doctors said "he just needs a healthy balanced diet like anyone else." So I continued to make Tyson's organic food and as he got older my husband and I decided to add or should I say not allow him to eat white sugar and or fried foods. And he continued to have a perfect bill of health.

Well at ten months almost eleven months Tyson got a sudden fever. And if you know anything about Sickle Cell Disease, that's what you don't want. And I couldn't give him Tylenol and let him rest because it could be a sign of something really serious. If any child with sickle cell ever gets a fever of 101 or higher that is an automatic hospital visit. And I don't mean a simple stick your tongue out and check your ears kind of visit. No it's blood samples, IV's, X-rays, catheters, test after test after test! And after being in the hospital for three days the doctors couldn't find anything wrong. My mother said it was because he was teething but the doctors didn't think so. They also couldn't tell me what the heck it was and because he didn't show any sign of being sick, I believe it was teething too.

Tyson continued to have a great bill of health. And in the midst of all this... I got pregnant!