Sydney’s Story
Updates of Sydney’s stays inside of the hospital from the Stewart family.
( These also can be viewed through her Caring Bridge website)
April 21st, 2023
We have had a busy morning. First, we are thankful for all the continued prayers. There have been some answers to prayers. First, Syd’s blood work continues to improve even her liver panels, second, Syd’s bone marrow biopsy did not show signs of Hemophagocytic Lymphohistiocytosis (HLH), a rare blood disease.
Hallelujah! The doctors have decided to treat this as Macrophagia Activation Syndrome (MAS) which is the complication that happens with Stills Disease. Even though is very rare to occur. After meeting with her doctor, oncologist, and rheumatologist it’s been decided to proceed with our anakinra shots 2x a day and a new powerful steroid called Decadron which will penetrate her blood-brain barrier. It is a waiting game at this moment. Please pray for the following:
- Syd has some fluid in her lungs. We don’t want to have to fight pneumonia! Please pray the fluid is absorbed.
- Please pray for muscles and tendons to continue to heal after the horrible inflammation she struggles with residual pain.
- Above all else, pray that we will see continued improvement with this new treatment and that Syd’s body will respond and heal.
- Syd is understandably emotionally drained as the days go on with this battle. Please pray for peace and clarity for her.
- Hold up our daughter Sophia in prayer as well. This has been emotionally trying for her.
We cannot thank everyone enough as we go through this ordeal. The texts, love, concern, phone calls, and bedside help
touch our hearts. Kevin and I are humbled by the support.
April 22nd, 2023
Good Evening Everyone,
We wanted to update you on Sydney’s progress today and we are happy to say that she has made some great improvement! Her liver enzymes have improved dramatically and she was again free of all of the horrible symptoms that she’s endured over the last few weeks! We will take every win we can get!
Her body was fighting for several weeks so as you can imagine, she is extremely fatigued. Today the doctor asked that we limit visitors since she needed some time to recuperate. Adding visitors to the constant interruption by nurses didn’t allow her much time to rest.
With that said, she is not out of the woods yet. We have been in this spot before where she seemed to get better only to spiral and get worse. While we are extremely excited that she’s making progress, we are cautiously optimistic as well.
Long term, the internal medicine doctor, rheumatologist, and oncologist all agree that we should hold off on chemotherapy as she continues to improve. There may be a point where her liver enzymes are recovered to the point where they recommend that we go ahead and start chemo, but the jury is out as to whether that is the best course of action or not. Her body and all of the upcoming tests will dictate what the next actions will be.
All of you have helped to make this time bearable and we want to thank you all for the prayers and the support that you’ve provided Sydney and the rest of the family! Please keep them coming because they are working!
Love Always,
The Stewarts
April 23rd, 2023
Good Evening!
Last night was a great night for the Stewart family! Sydney was able to sleep throughout the night (minus the multiple potty breaks and nurse interruptions!). This is the first time that she’s had zero pain that has kept her up at night! We are blessed!
Thank you to all of her friends and family that have reached out to check on her. It means a lot that she is loved by so many people!
She has been tasked with walking more throughout the day. Although it is a taxing feat for her right now, she’s up to the challenge and is doing multiple laps that will hopefully get her lungs and muscles in a position to revert to normal life!
The doctors are pleased with her progress and so are we! One giant prayer request is that we still need some last test results of Sydney’s bone marrow biopsy. Pray for good news about the results. We should get them tomorrow or Tuesday.
Thank you to everyone who has had a hand in her recovery through prayer, well wishes, and physical assistance! You will forever be a part of the Stewart family!
Kevin, Melanie, Sophia, and Sydney Stewart
April 24th, 2023
Hi Family and friends,
Today was a difficult day for several reasons. Sydney had a slight fever today and is having some pain in her abdomen. They gave her pain meds for the pain, but that can lead to more side effects she has to contend with later on. Her oncologist is deciding to treat her as if she has HLH along with Macrophage Activity Syndrome (MAS), based on a few findings in her bone marrow biopsy. The rheumatologist is still treating her with the same medication, but keeping the low-level chemo treatments for later, if needed.
Sydney has had so many steps forward and steps back that she is overcome with emotion a lot of the time. Her spirit, mindset, and heart have taken a beating. We are just crying out to God that He would loosen the grip of this Stills Disease and all the complications Sydney is having to bare.
Our daughter is an amazing warrior! We see God’s hand in the little victories that have happened. With your prayer, her liver enzymes are improving and all the rest of her blood work has improved, the fever she experienced remained low-grade, and she can stand and walk a minimal distance on her own. Praise God!
As you move through your night and day, please pray for:
- No pain tonight
- No fevers
- That Sydney would remain infection free as her immune system is being suppressed.
- Sydney’s mindset would remain positive as she climbs this mountain.
- Pray that Kevin and myself stay healthy and faithful and that our God has Sydney in his hands.
One last thing: We were thinking, if you had a second, please slip a positive note of encouragement to our Sydney. She needs wind beneath her wings at this point in her journey. Please send it to 2042 Redwood Crest
Vista, CA. 92081
Thank you for the prayers, the meals, and the care! Love, Melanie, Kevin, Sophie, and Syd
April 25th, 2023
Friends and family, we come to you with the biggest request. Sydney was moved back to the ICU last night. Her blood pressure and pain have been problematic. Her rheumatologist has decided to start her on a low-level chemo today. We need to throw everything we can at this disease. The hope is to “reset” her immune system. We ask that you would pray that this new treatment will put this disease down once and for all. Also that she will have the reserves to withstand the side effects of the low-level chemo. We believe that God is the Great Surgeon! We believe His hand is on our Sydney as we navigate forward. Please continue to pray!
“I can do all things through Christ who strengthens me”
Love Kev and Mel
April 26th, 2023
Family and friends,
Sydney had the first dose of her low-level chemo last night. God is good and watched over her as they monitored her first dose. Her body did not reject the chemo and she had slight nausea, but overall she took it like a champ. We believe all your prayers that continue to move our Syd down this path of healing.
We have to wait 5 days then they will administer another round of low-level chemo. We envision this chemo as the big gun that we have brought to this fight in her body. We pray fervently that this low-chemo can win this battle against this aggressive auto-immune disease.
Some big praises we have are that Sydney’s blood panels continue to improve. Hallelujah! Today, she walked on her own! She is smiling today and we can’t tell you enough how much we have missed that.
Our continued prayer requests are:
- She will stay infection free as this chemo shuts down her immune system
- When she does start feeling the side effects of the low-level chemo, they will be minimal.
- As she starts to turn a corner towards improvement, Sydney would have a positive mindset because she’s felt good before but then got worse.
- Lift her little sister Sophia in prayer. She is a tough cookie, but we know this has taken a toll on her.
So many of you have shared mighty prayers with us during this difficult time. We are humbled by everyone’s love and support.
“He took our weaknesses and infirmities and bore away our diseases.” Matthew 8:17
Love,
Melanie and Kevin
April 27th, 2023
Thank you for all of your prayers! Sydney has had 3 consecutive days without a fever or any substantial setbacks! She’s had some pain and nausea, but that’s to be expected with Still’s disease and the chemo treatment. It’s really good to see her beautiful smile again! 🙂
She’s not out of the woods yet, but she may be out of the ICU tomorrow! Her vital signs are stabilizing so there may not be a need to keep her in the ICU for much longer!
She is overcome with the letters, emails, and gifts that she’s received from all of you! You have made her feel special and we truly appreciate you for doing that! We also want to thank the Anaheim Fire Family for providing meals to us during this time! Having meals arrive at our house allows us to focus on Sophia and all of the other needs of our family! Thank you all so much!
We ask that you continue to pray for Sydney’s recovery and our family’s healing! This has been a tough road and we are still trying to navigate it, but with your help, we will make it through!
The Stewarts
April 28th, 2023
We are continuing to march forward today! Syd remains fever free and her blood work continues to improve as well! Praise God! We learned a big thing today, which is the antibiotic, Bactrim, that has been sent home with her in the past, was given to her today, and she had an allergic reaction to the dose. This is important moving forward as we look ahead to her treatment plan at home. This experience today helped explain some of her struggles in the previous weeks.
Tomorrow, Sydney receives her second infusion of chemo. Please continue praying that these chemo infusions work their way through Sydney and annihilates this Stills disease. Pray that Sydney figures out the response of her body to the chemo and what reduces her side effects.
Again, we continue to be grateful for all the love, support, delicious food, wonderful notes, and the sweet gifts for Syd!
Thank you,
Mel and Kev
April 29th, 2023
Well, family and friends, we have had some setbacks in the last 24 hours. Syd had a severe allergic reaction to a medication called Bactrim. But–are these setbacks or opportunities that present differently. Sydney is learning the art of flexibility, determination, and how to deal with setbacks. Our sweet daughter has the best disposition. She is in this for the long haul. We are so proud of her and her diligence to persevere. She has had a pretty good day today. She walked around and was able to sit in the chair in the sun. The sun was a great feeling on her back. Just seeing her in the chair gave my heart some happiness. Today is the second round of Chemo treatment. Pray that this awesome Jesus Juice gets in and does its J.O.B. Thank you to all of you who have left messages here, texted, called, and sent cards to the house.
WE CAN DO HARD THINGS.
Love Team Stewart
May 1st, 2023
Hi Family and friends,
We apologize for not updating everybody yesterday. It seems the medical community comes to a screeching halt in some avenues over the weekend! Sydney came through the allergic reaction to the Bactrim like a champ! Our daughter has exhibited such strength and toughness in the face of adversity.
Even though Syd’s white blood cell count is low, they gave her the next chemo infusion on Saturday, just a lower dose. We need to continue attacking this HLH aggressively and shut down her immune system.
Today, Monday, May 1st, her rheumatologist was pleased with her blood panels! Hallelujah! We are embracing every blessing and positive news. Syd will receive another chemo infusion on Tuesday. We continue to be positive moving forward that God is has her in his hands! Keep the prayers coming as we continue on this journey with Sydney.
Specific prayer requests:
1) Syd stays infection free
2) Kev, Soph, and I stay healthy
3) our family’s mental health continues to be positive
4) Syd’s white blood cell count improves
Thank you for all the sweet gifts, cards, and treats you have sent Sydney and Sophie. We are humbled by the love and caring we have received. From the bottom of our hearts, the meal train has been absolutely helpful in this time.
Love, Kev, Mel, Syd and Soph
May 3rd, 2023
We find ourselves in a holding pattern as the doctors continue to monitor Sydney’s blood panels and white/red blood cell count. The world of chemo treatment has taught us a lot. We are learning what helps Sydney and alleviates the side effects. Chewing on a cup of ice during the infusion treatment has been recommended to help avoid mouth sores to not eating before her infusion treatment. Slight nausea and fatigue are mainly what she is experiencing.
Her oncologist hopes she will be able to withstand the full dose of chemo on Saturday. We are working on our patience. The waiting game spreads us thin but we remember that the full brunt of the waiting is on Sydney in her hospital bed. We are praying and continue to ask each of you to keep praying that this chemo regimen will put this disease to rest and that Syd’s body will withstand the wear and tear of the chemo and her medications.
Praise the Lord for a group of doctors who are taking an aggressive approach to Syd’s condition, the many nurses who have been full of compassion, and all of you who continue to hold up Sydney in prayer! We feel your support, encouragement, and love!
God Bless ,
Melanie, Kev, Syd, and Sophia
May 5th, 2023
Hello everybody,
We want to just say a heartfelt thank you to everyone who has contributed to our Meal Train! We appreciate the help as Kevin and I shuttle between the hospital and home. Sophie has been grateful for he mac-n-cheese! The responsibility of making dinner being taken off our plate has been a giant help.
Sydney, is preparing for a full dosage of her chemo infusion on Saturday. The waiting game between treatments is spreading everyone thin emotionally and mentally. Syd is has exhibited extreme strength and determination during this period of treatment. I have to remind myself time and time again that she bares the brunt of this as she continues to endure this hospital stay.
Family and friends, your prayers, texts, and notes of encouragement for Syd and Soph have kept the Stewart Family moving forward, hour by hour and day by day. Specific prayer requests:
1. Sydney’s red/white blood cell count continues to improve.
2. Sydney’s mindset continues to stay positive.
3. Pray for Sophia’s mental health.
Thank you is not enough when it comes to expressing our appreciation to all of your love and support!
Love,
Mel and Kevin
May 7th, 2023
Hi family and friends,
Sydney had the full dose of chemo yesterday. Today was just a difficult day for Syd. She is dealing with chemo side effects along with painful menstrual cramps (TMI) and a slight fever. The slight fever might be due to the chemo or possible infection. They are running tests if there is any infection.
Syd’s mindset is very delicate right now. She hears from the doctor she might go home by the end of the week but feels frustrated with her lethargy, cramps, and slight fever. We keep encouraging her that these are the starts and stops she is experiencing right now. She truly is over everything right now. Sydney is going on week 4 of being hospitalized. She shared that every time she thinks she’s doing good, something sets her back. Kevin and I just keep championing her and encouraging her.
Please continue praying for Sydney. This is the hardest part of the marathon. She is running out of fuel and we need to keep her lifted in prayer. Pray that she has little to no infection, her cramps will abate, and she will have a better day tomorrow emotionally!
We continue to thank every one of you for your notes of encouragement! She has loved every one of them! We appreciate this village that continues to support our family!
May 8th, 2023
Well, happy Monday, family, and friends!
We are just lifting Syd in prayer today. The oncologist told us Syd is fighting a treatable infection. This explains the fevers last night. This is good to know though because the doctors are hoping the uptick in her blood panels reflects her body fighting an infection and not the HLH breaking through.
Syd had been showing progress and healing until this full dose of chemo and the infection. We are praying the infection will leave her body and we can see improvement in her blood work. I never thought I’d know so much about all the different acronyms we see on our blood work results. (CRP, AST, ALT)
Please pray for more baby steps forward and no steps backward. Please pray that our frustrations, worry, and anxiety stay at bay! Our faith keeps us moving hour by hour and day by day. Sydney is showing herself to be brave, resilient, and determined. She had many tears in the last 24 hrs. but nothing like a hug from Dad to cheer her up!
Thank you to all of you who keep checking her Caring Bridge, reaching out, texting, and calling! You bless us!
May 10th, 2023
Hi family and friends,
I am so grateful to every one of you who wants to know how to pray for Sydney. We continue to pray for her blood infection to end, that her white blood cell count would improve, and that blood panels continue to show a downward trend. We are in this waiting game as the oncologist determines the next step in her treatment.
Because of her low white blood cell count, they have to balance the amount of chemo they give her and how defenseless she can be during chemo treatment. There are many factors that all her doctors have to consider moving forward. We want to continue the chemo but she may need to put it on hold.
We are waiting to see what the oncologist decides in the next two days. Her infectious disease doctor was hopeful that her infection is treatable from home! That is the first time we have heard anything about her going home. The uphill battle continues, day by day, and we couldn’t do this without the wonderful village that is all of you!
The best thing ever was her doctor allowing her to go outside for the last two days. Nothing like some good sunshine for the soul and healing!
May 13th, 2023
Hi family and friends,
It is with giant thankful hearts that we can share that we brought Sydney home yesterday. She was in the hospital for roughly 28 days during this last hospital stay. Before that, she had been in the hospital for a 9-day stay and a 2-day stay. Through it all we have seen Sydney rise to the occasion and persevere as she dealt with everything that came her way.
We want to thank all the nurses who took care of Sydney through some of those long nights in the hospital. We met so many wonderful human beings who showed compassion, care, and kindness through Sydney’s ordeal. I can say now that I had no idea the level of attention and focus it takes to be a nurse. Hands down, they have earned our deep respect and admiration.
As we look ahead, we continue to ask for prayer for Sydney as she starts her chemo this week. We are praying for her to stay infection free and that her white blood cells stay at a number that allows her body to continue the chemo for 6 more weeks. Of course, ultimately we pray her blood panels continue the downward trends needed for recovery. Please pray for her delicate mindset now that she is home. We need to find a routine with her medications throughout the day, her sleep schedule, and her eating habits. Sydney’s new normal will take a while to get used to but we pray as a family we can settle in and get in a pattern.
Thank you to all of you who could welcome her home yesterday! Thank you to all our prayer warriors out there. God is good!
May 17th, 2023
Mother’s Day was a blessing because we were able to have our beautiful daughter out of the hospital and back home once again. We had brunch by the ocean and took a long walk (roll in her case) along the ocean! We all enjoyed having the family together after a long month apart.
Unfortunately, on Tuesday, Sydney had another setback and is in the ICU again. Although we are heartbroken that this is happening, we could potentially have answers as to why this has been so damaging to her. We and the doctors believe that she’s developed an allergy to the medication that she’s been receiving for Still’s Disease. This exacerbated her inflammation, which is the absolute worse thing for her since she has Still’s Disease. They are prescribing another medication in the same class that will hopefully help tamp down the disease enough so that she can continue her chemotherapy. Unfortunately, the medication is hard to find and she was unable to receive it today. Although this medication comes with its drawbacks and side effects, we must keep moving forward in finding a way to calm her immune system.
Thank you all for your support during this time. We surely couldn’t do this without all of you praying for and encouraging Sydney and our family! Please pray that:
1) The new medication will calm her immune system.
2) Sophia can find peace knowing that the doctors are doing their best to heal her sister. This has been especially hard for her!
3) That we, her parents, can remain strong for Sydney, Sophia, and each other, even as this is individually taking its toll.
Thank you all for everything, you all have been amazing to us and we are eternally grateful. Please continue to pray for Sydney’s healing!
Love,
The Stewart Family
May 22nd, 2023
Family and friends,
We continue to thank you for the notes of encouragement, texts, and phone calls. As we keep moving down the road we are amazed by our daughter’s strength as she continues to come up against many hurdles and setbacks.
Sydney’s doctors have begun the ball rolling for a bone marrow transplant. Kaiser uses L.A. The City of Hope to do transplants. The unknown is scary to Sydney, she has so many things that her young brain and heart have had to digest and accept. As her parents, we are doing our due diligence to educate ourselves on all there is to know about bone marrow transplants. The timeline for this transplant is still in the works. We have no specific date as of yet.
They have had the lab send Sophie’s blood to L.A. The City of Hope to see if she is a match for Sydney. Many of you have touched our hearts and shared you are willing to be tested to see if you are a match. We are so appreciative of your willingness, and when we have more of a timeline and the procedure of how a bone marrow transplant works, we will be sharing what we have learned and what is involved in the whole process.
Our wonderful Anaheim Fire Department continued the Meal Train for our family. Many of you have asked how you can help. Please look at the link above. The meals allow us to have one less thing to do.
Our prayer requests are: 1) Sophie will be a match
2) Sydney’s blood panels continue to trend downward from this last flare
3) The blood marrow team will be timely and efficient for our daughter
4) The 2 new medications they are using currently hold off the HLH
5) Sydney’s mental health does not waver for the journey ahead
Thank you again, everybody! As we continue down this path, we feel blessed to have all of you by our side!
I was looking up some verses to comfort me last night. I found this verse, which I know well, but certainly eased my heart and mind.
“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” Isaiah 41:10
May 25th, 2023
Hi everybody,
We are still in a holding pattern for the next step in Sydney’s journey. We still have not heard if Sophia is a match. We are trying to be positive and hopeful we will hear back soon!
The world of bone marrow transplants is a whole new ball of wax for this family!
On a different note, Sydney has begun a blog. We are encouraging her to write down her feeling and thoughts. She has struggled with her mental health during this hospital stay. It’s overwhelming knowing the journey she has in front of her and this has created a sense of hopelessness and anxiety. Thank you to everyone who takes the time to read her blog as she updates it and pours out her emotions onto paper!
June 2nd, 2023
Hi everybody,
We have kept it under wraps a bit more that Sydney got to come home this Tuesday, May 30th. As a family, we say hallelujah and praise God for his continued hand in Sydney’s Journey. Sydney’s blood work continues to remain balanced and acceptable to her team of doctors. This new treatment involves two new medications, Canikimumab which replaced the horrible Anakinra injections she was giving herself 4x a day! Now it’s an injection every 28 days. The other portion of her new treatment is called Emapalumab, which is like a chemo or infusion treatment. She is receiving the infusions 2x a week. (She made it to her first outpatient infusion appointment! Pic below)
Kaiser has shown itself to be proactive and forward-thinking as they treat our daughter. They listened when Kevin and I insisted on this last hospital stay that Sydney’s treatment needed to change. These are not inexpensive treatments and we praise God they were receptive to our requests.
As you know, we are using this treatment to prepare her for a bone marrow transplant. We, unfortunately, got word that Sophie was not a bone marrow match for Syd. Now we don’t the specifics about how much of a match Sophie was for Syd. Kevin and I continue to research bone marrow transplants and see that modern medicine can do amazing things even when a person is a 50% match.
Another praise is even today, the bone marrow transplant team changed her consultation appointment from June 13th to June 6th! Hallelujah!
Please pray for Sydney as she anticipates her upcoming bone marrow transplant and questions about her fertility and her continued health.
Thank you family and friends for the continued notes of encouragement, meals sent/made with love, and your texts/phone calls.
We continue to pray for the peace that surpasses all understanding!
Love, Mel, Kev, Syd and Soph
June 11th, 2023 ( Most Recent )
Hi Everyone!
We had the BMTconsultation on Tuesday and it was great to meet the doctor. He’d already read her report and only had a few clarifying questions regarding all that Sydney’s been through. He stressed to us how important it is to get the bone marrow transplant completed as soon as she is healthy enough to do so. All of her numbers are normalizing with the current medication so we’re getting very close.
While discussing the BMT, he asked about our ethnic makeup to get an idea on the potential donors in the worldwide registry. We told him that Melanie is Nicaraguan and I’m ½ black and ½ white. Syd’s sister Sophia is not a match. He said that there was very little chance of finding a match, but they were already searching worldwide. In all of the reading we’ve done, we’ve found that ethnicity is huge in whether you can find a match. The unrelated BMT match needs to be as close to 100% as possible. There are very few Nicaraguans on the registry, and African Americans only have a 29% chance of finding a match. They want to have multiple matches, because many times the donor isn’t healthy or is not interested in donating anymore. So, you could imagine how tough it will be to find that match.
The good news is that they’ve come a long way in medicine and can now conduct a 50% related match. This type of BMT, called a haploidentical BMT, can be conducted with either myself or Melanie providing the bone marrow. Although it comes with risks, they have ways to reduce the potential side effects while encouraging engraftment.
After consulting with other City of Hope experts, the doctor called and said that we will wait to find a donor for about another week or two. If we don’t have enough matches, we will immediately start the process for the haploidentical BMT. They feel that time is of the essence and they don’t want to wait the typical 2-3 months for a match only to have Sydney have another flare and end up in the ICU for the fourth time…or worse!
Many of you remember Syd as a baby and you’ve seen her grow up to become a beautiful young lady. She is a sweetheart of a person and was a stellar high school athlete. This disease and her hospital stays have been brutal to her body. Her last hospital stay saw her lose at least 20 pounds of muscle. Seeing her go from being an avid soccer player to barely being able to walk is hard. She’s finally able to walk without assistance and is working on building her muscles to endure another long stint in the hospital.
When the BMT process begins, she will be given intense chemotherapy and potentially radiation. Afterward they will infuse her with the bone marrow and she’ll be admitted into City of Hope’s hospital for at least 4 weeks. After she is discharged, she will need to return to the City of Hope twice a week for up to two months for follow up appointments. Needless to say, it’s going to be a grind. We are up to the task and are preparing for a stressful 3-4 months.
Many of you have reached out to see if we are going to conduct a marrow drive, but I wanted to talk with the transplant doctor prior to committing to one. He made it very clear about her chances of finding an unrelated donor match and is convinced that Melanie or I will need to give the bone marrow. With that said, we would love to have a coordinated bone marrow donation campaign to help support those that need a BMT, including Syd. Who knows, some of you might have some central American, African, and European in you! Be The Match has an easy way of providing a sample. They send out a free kit, you do a swab, and you send it back…it’s pretty easy. I’ve received an email from them and will reach out on Monday for options.
Love, The Stewarts
Sydneyshealingjourne 