Journal

Journal entry by Sydni Lee

Syd and I have the honor of speaking at the Ronald McDonald House party 2019.  Attached is a link to a nice article that the Arizona Daily Star in Tucson did about her journey and the event.

https://tucson.com/news/local/ronald-mcdonald-house-will-host-fifth-annual-house-party-benefit/article_79ae1252-a31d-5193-a058-90b92570d4fc.html?utm_medium=social&utm_source=email&utm_campaign=user-share
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Journal entry by Sydni Lee

It's been a month of celebrating all the miracles of this past couple years.  This week in particular has been filled with good things.  My daughter Heather turned 21 and I'm so thankful for all she has done and sacrificed for our family during Syd's health journey.  Hope she will always know how dearly she is appreciated and loved! We got two very exciting results back from Sydni's testing this week.  Her MRI on her brain shows that the major clot of concern is gone!   There are still other lesions but they will go away over time.  What this means for Syd is that she no longer is at risk for stroke and she can stop her daily injection of a blood thinner.  This is a day she has longed for!  The blood thinner shot has been a source of frustration for her.  It's thick like syrup and hurts.  She's been a champ about it, but for sure she is SO excited to not have to do them anymore.  The second miraculous news is regarding a chimerism test.  Chimerism testing predicts relapse and survival after allogeneic transplantation. The test identifies genetic profiles of the recipient and donor and then evaluates the extent of mixture in the recipients blood and/or bone marrow.  Sydni's chimerism came back as fully engrafted.  So she is ALL donor.  It may be hard to grasp the enormous significance of this for many, but this is HUGE.  For most cases they are looking for 80% engrafted.  With Sydni's disease the treatment required absolute eradication of her cells.  Thus why she had such radical chemo and was literally barley hanging on to life for awhile.  We have waited an entire year for this testing and the relief and joy we have knowing all the torturous treatment was not in vain in indescribable.  She will have surgery in the next month or so to get her port removed and we will start reimmunizing her this month. She started her senior year back at public school this week and I know this is going to be a great year. I thank God constantly for her gift of life, the amazing medical team and our precious family and friends.  When all this started I clung onto the fact that God is able.  Although I know this to be true, it's a whole different feeling knowing that He chose to make it so.  Eternally grateful!  xoxo

Journal entry by Sydni Lee

It's been 6 months since I have posted.  6 months of learning our new normal back at home in Payson.  Watching sprouts of life grow out of Syd's head.  Her hair is now curly but the same beautiful red.  I'm amazed every day of the gift of life for her.  The fact that she is doing remarkably well and you would never know that she was ever sick, let alone hanging on for dear life.  Today marks 1 year since her bone marrow transplant.  It's a surreal day for me with a wide range of emotions.  Dr. says her immune system is at 85%!!!!!  She will have an MRI on her brain July 22 and hopefully there will be some healing happening there.  As far as everything else, she has gone from 43 pills per day down to 1 pill and one blood thinner shot.  Her blood work is pretty "normal" now and this kid has kicked butt at not only working out and getting her strength back, but has caught up on all the school she missed.  She will go back to public school the end of July and enjoy being a Senior.  She has been able to go to a couple camps this summer and step back into a social life.  Her DNA is still changing and her blood type is still undetermined.   Mind blowing.  She has been able to correspond with her donor (still anonymously).  Today, and the rest of the month we  are celebrating her "new birthday".  Another chance at life that would not be possible without a selfless donor from across the world.  Thanks to everyone who has supported, encouraged and prayed for her and our family.  I'm forever grateful and thank God every day for allowing her to remain with us!!!!!

Journal entry by Sydni Lee

Update by Syd's mom:  I was disappointed to see that the last update I wrote in November somehow did not post and got deleted so I'll try to briefly recap.  I wanted to thank everyone who has donated to caringbridge, and at the same time clarify that if you have donated to caringbridge it supports their site. (which is a great cause!) Just know it is not a donation to our family.  We ARE NOT presently asking for donations but I needed to clarify because some people have thought they donated to help Sydni's needs and I felt bad to tell them that was not the case. - So quickly, going back a bit, we wanted to share that in November Sydni received a letter and a really cool bee pin from her donor!!!!  This was such a surprise and honestly we didn't know that was allowed until one year after transplant.  It was the most amazing letter and this gives us hope that at some point they can meet.  Sydni and I both wrote back to the donor.  The letters have to go through the Donor Registry coordinator as it has to be confidential at this point.  The letters are not allowed to share any identifying information on either side, although we do know it's an international donor.  It still blows our minds that her life was literally saved by the generosity and sacrifice of a total stranger. - We have been thoroughly enjoying the God given gift of being home for longer periods of time.  Thanksgiving and Christmas at our own home was such a blessing. We're slowly getting organized and settling into some sort of routine.   Sydni's hair is growing back the same beautiful red color although now curly.  Cold and flu season is upon us and has me a bit on edge as I've been informed by her medical team of the possible consequences.  I've been fighting a cold and thus keeping any contact with Sydni to a bare minimum.  It's weird but seriously I've contained myself to my bedroom.  My daughter, Heather, got engaged so that is joyful news and something to celebrate and focus on.  Although, it brought to light how much this horrible disease has really affected our entire family.  Upon Heather's announcement of her engagement I knew I had to sit down my children for a deep discussion.  You see, when we were seeking a bone marrow donor for Sydni, her sister Heather and myself were both tested to see if we were a match.  The results came back that both Heather and I carry the gene for HLH thus would not be able to donate marrow.  So Heather, her finance Travis, Sydni and I discussed that the Dr. stressed how important it is that having the gene means if they ever want biological children they would need to first go to genetic counseling for obvious reasons.  Anyways, I knew at some point I would need to have this discussion but couldn't bring myself to it until it was necessary. One crisis at a time ha ha. Thankfully, both girls and Heather's fiance took it well, discussed options and threw in some good humor as usual.  - We've been blessed with opportunities to help promote marvelous charities and foundations such as the Bald Beauty Project, Ronald MacDonald House Charities of Southern Arizona, Be the Match to name a few.  We strongly believe that anything we can do to have something positive come out of all this is not only our duty but a God given privilege.  Like they say - "pay it forward."   Sydni has had the opportunity to attend her young adult oncology support group sponsored by Courtney's Courage.  It is one of the most helpful things for her.  Yesterday, she had her regular clinic appointment in Tucson. She has proven to be quite a good driver.  The last two trips she drove all the way. Proud mom moment!  Anyways, at clinic they had to clean out her port because they couldn't get it to draw blood.  I'm told this is common.  It's the first time she had it done.  We were told that basically the medicine used to fix the problem is like pouring drano down the sink.  The medicine eats away the calcified tissue/fluids and bingo, the port is able to be accessed again.  Medicine is fascinating that is for sure.  So we are thankful to report her numbers are holding steady. WBC is 2.4.  Her kidney is doing better for the first visit in awhile so that is wonderful.  Her platelets dropped in half but Dr. wasn't concerned.  Her legs have petechiae but it's not bothersome to her. They cut back some medicines and we will cut them more before the next appt.  She's scheduled for brain MRI next month which we are hoping will be the big hallelujah moment we've been praying for.  Syd and myself of course would like nothing more than to be done with her daily blood thinner shot and seizure meds.  / Syd's Child Life Specialist presented her with a very special and significant "Bead of Courage" yesterday.  It's a Survivor Bead.  Needless to say I cried and shared a lot of personal feelings with Sydni.  I hadn't really thought about it until she was given this bead, but it's a beautiful truth I'm grabbing a hold of.  She is that.  She is a SURVIVOR!  I am confident she has crossed the threshold into this new state.  No longer in the daily life threatening critical stage.  Watching all that has transpired this is mind boggling, humbling and surreal.  A miracle granted by a loving God for sure.  Currently Syd is focusing on her online courses, wanting to gain strength through exercise and of course helping with her sisters wedding.  She keeps busy with artwork, wire wrapping stones and making jewelry.  We plan on updating again after the MRI!!!  We are so thankful to God for carrying us through and for each of you! I can't believe it's been 6 months to the day since Sydni's transplant.

Journal entry by Sydni Lee

Geri here.  It's been 87 days since Sydni's bone marrow transplant.  It's been almost 6 months since we abruptly left our home, my business, my job, and our "people". It's so surreal.  I must say that you can always rebuild a business and finances, get a new job or find a new home.  So reminding everyone to remember what's important.  God is always good even when the world or circumstances aren't.  Relationships and how we treat others is irreplaceable.  Sydni continues to get stronger and the last two weeks have been a clear sign of her body "holding it's own".  The last two clinic appointments she has not had to have any infusions other than some sodium and her regularly scheduled intravenous gamma globulin (concentrated antibodies to boost her immune system) and Pentamidine (to prevent pneumonia).  Her hair is starting to grow back and she is cute as a little chickadee.  She is scheduled for an MRI on her brain Oct 13 and an MRI on her spine Oct 16.  The results will tell us how well her central nervous system is healing.  I know she is healing because her headaches are getting better and she is walking like a champ!!!!  Up and down stairs several times per day.  So thankful to God I can't even express it.  She remains in good humor.  I tripped up the stairs the other day and without missing a beat she said "I think YOU need some physical therapy"  ha ha  .  The most significant thing I want to share today is that Sydni was released to come home to Payson for a visit a week ago. The visit was amazing and then we went back to Tucson for her clinic appointment.  That went great and she was cleared to come to Payson again!!!  So here I am, sitting on MY porch, in my pajamas drinking coffee.  Laundry is going, music is playing, and I'm just soaking in every little thing.  It's hard to explain what Syd and I are experiencing but there are just so many things that we will never take for granted again.  Like not having to get dressed to go get a cup of coffee and being able to do laundry in my own washing machine without having to wait my turn.  We have thoroughly enjoyed our time with my daughter Heather.  Seeing my girls together and feeling somewhat "normal" has blessed my heart and mind more than you can imagine.  One of my favorite things in life is them hanging out at our home and singing together.  So for a few more days we get to enjoy a taste of home.  I am praying that we can be on a two or three time per month appointment routine by November.  But we will take whatever we get!  So if you don't hear any updates you can assume she is progressing well.  It will take one to two years for her to be 100% but she's come so far!!!! Her white blood count has been a 1. for the last two weeks.  Still extremely low and coming up very slowly, however, overall she is improving.  Her nausea and blood pressure are less frequent issues now.  We want to thank every single person who has been a part of this journey.  I can never name everyone and fear anyone feeling excluded but I have to say a special thank you and praise God for Laura and George Corona, Grandma Linda Lee and Aunt Judy, Expedition and Calvary Chapel, Gail Dawson and all my ladies at Above and Beyond Aesthetics, Mike and Lisa McCannon, Brooklyn Klein, Linda Skeen and crew, all the prayer warriors, Josh Johnson and Ronald MacDonald House Tucson.  We have been showered with love, encouragement, financial support etc. from our family, friends, churches, community and strangers.  I'll never be able to thank everyone enough.  It's so humbling and awkward too.  But please know we are forever grateful and forever changed.

Journal entry by Sydni Lee

A message from mom: So easy to lose track of all that transpires and to not put out a timely update.  Since we last updated, Syd was released from the hospital again.  Her White blood count has been lingering at .9 for awhile.  Although we would love to see it higher, I'm confident that will come in time.  It does keep her restricted to  neutropenia precautions which are a bummer to be "the girl in the plastic bubble", but she does well within the limitations for the most part. Because of a dear friend of mine from childhood, Syd was treated to a private art lesson and will have one more so that has been the a great blessing and reprieve for her. Grandma and Aunt Judy are coming with us to the next one tomorrow.  Syds kidney doctor is fabulous and confirmed that her high blood pressure is related to some kidney issues and damage.  The good news is that over time the kidney should be back to normal.  She is on two blood pressure meds and when it goes too high we give her a bolus of a third which brings it down.  Today clinic was great!  Syd did not have to have any iv infusions which is a first!!!!  She was taken completely off of steroids which should help the blood pressure as well as all the other horrible side effects steroids have so we are extremely grateful.  She doesn't have to go back to clinic until Friday which is again a first!!!  So things are going in the right direction and we are so happy.  Another super cool thing is that the Be the Match people sent us an email that because of Sydni being willing to share her story and video (made pro bono and with love by AJ Silva) 500 people to their knowledge have signed up through her link to be bone marrow donors. I would have to say that is awesome even though the circumstance was dreadful.  Brings  to my mind one of my life verses  "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Romans 8:28  
Aunt Laura, Dana and Jackie took Syd and I to a park one day last week which was so beautiful.  It was awesome to spend time with family and get out of the room.  There were only a couple people other than our family so it met the requirements for an outing for Syd.  Funny thing is that we ran into one of her nurses there!!!There were turtles and fish and gorgeous scenery.  Super blessed. A real treasure hidden away here in Tucson.  Syd met with the Make-A-Wish team and that was really exciting for her.  We will see what they say and report on that in the future.  One of the wish granters is the mom of one of Sydni's nurses so that was ironic too!  Tonight she is going to a young adult oncology support group here at Ronald MacDonald house.  It's a very helpful thing for all of them to be able to relate and share about things that none of us could ever understand if we weren't the one going through it.  As always, we are so grateful for the love, support and help.  A special thank you to those who have taken it upon yourselves to fundraise, do a Go fund me,  etc.  You know who you are and although it's so awkward for me and very humbling.  I just want to thank everyone who has helped make our burden lighter. Thank you from the bottom of our hearts for every single bit of love and help. I hope none of you ever have to experience anything like this.

Journal entry by Sydni Lee

When Sydni was discharged we were told we would have clinic 2 times per week, maybe 3.  Clinic days are no small task.  They usually are an all day affair.  Anyways, last week (Sydni's first week out since transplant) was a long one.  She had clinic 5 days, a variety of iv infusions as well as 5 blood transfusions.  Over the weekend she continued to have some blood pressure issues, so as of yesterday Sydni is back in the hospital here in Tucson. Ironically in the same room she was in last stay. After the initial discouragement on both of our parts, we are now both at peace and back into full swing here at the hospital.  We know God has her exactly where she needs to be and we are confident in the team here.  She will see a renal doctor today.  We are grateful they are getting straight to addressing the issue so that she can move forward with recovery.  We have accepted the fact that hospital stays are possibly going to be a part of the process (although our hope is not to have any more!) Some good news is that Syd has started online courses for school, she has been going up and down stairs!, she is playing her ukulele and singing again as well as a lot of art work.  We definitely have both gained a greater appreciation for the very smallest things in life - Like taking a drive to watch the sunset, seeing the stars, bouncing on a yoga ball with Aunt Laura, eating without having to count carbs and give shots.  For sure we have had tears and frustration, but it's short lived and certainly not at the center of our days.  Faith and Humor are our main staples these days.  We are gonna need that as she will have quite an isolated life for awhile and that is probably the hardest thing right now.  But she never fails to make the best of it.  I told her a couple days ago that she couldn't have a sucker at the moment because she needed to mask up to go outside.  True to her ingenuity, she saw no good reason to be restricted.  Ba ha!  Check out the pic below.  Gotta love her. 
  Last week we took a picture of Dr. K and Sydni on her "first day" of school for her Junior year.  He said that next year for a Senior pic of the two of them that they both will have more hair.  I told him that Sydni has a better chance at that than he does ha ha!!!  As always, thankful for every single one of our family, friends and all the love and help.  Feel

Journal entry by Sydni Lee

Entry by mom: So much has happened.  It has been 30 days since transplant.  Syd has been in the hospital this time for 43 days.  She has been in Tucson for treatment 116 days. All the days run together.  I just wanted to quickly share that Sydni was put on outpatient today!!!!!!!  So thankful!!!!!    An hour after she was discharged we got a call that one of her pending tests came back and she has a BK virus in her bladder.  Some people get this after a transplant, so she will be getting that treated at clinic on Monday.  This is just how it is going to be for some time and we will do our best to roll with it and not get discouraged.  Things may happen, but she is pushing forward and we are thankful for all the good!!!!  She got her PICC line removed today!  Now only a port remains.  She is off of insulin!!!!! What a nightmare that was.  So thankful that is over. The nurses and staff sang a so-long song and made a poster for Syd and surprised her when we left.  Mr. Nature came and said goodbye and sang with her.  He said he has been telling others the story of that day all the patients sang together and that she inspired them to learn the song "One Day".  So she did sing by this Friday! yay!  For now she remains on a lot of precautions and a ton of medications.  We will be at Ronald MacDonald house for the time being.  We are going to get organized tomorrow and then go to Aunt Laura and Uncle Georges for dinner.  Can't wait.  We are tired and will try to update more thoroughly when time allows.  Want to thank everyone again for the absolute love we have received. And I want to Praise the Lord for all his goodness, the strength and comfort He has provided along with so many other blessings - which include our family and all of you.

Journal entry by Sydni Lee

Since the last time I wrote, Sydni's pain increased each day and it was torturing to watch.  Can't imagine how she feels.  She stopped eating and stopped taking the liquid oral meds.  It was too painful.  She also hasn't been able to speak in a few days.  Her blood pressure has been a big issue, her feet are pretty swollen and pitted. Her poor skin is so compromised from the chemo that the tape used to cover her access lines literally peels off her skin when removed.  Yesterday the doctor told her "I know you don't feel better, but you ARE getting better" The good news is that she now has numbers!  Her WBC is .2 and her ANC is 70.  Doctor says her numbers are coming slowly, but they are coming! Praise God.  He said there are "early" cells which means her body is making cells!!!!!!This morning I am excited to report that she is taking her oral meds again and trying to sip water and she ate a cookie!!!!!!!! This is huge.  She walked 1 lap yesterday and 3 this morning.  I'm so thankful and it is a huge blessing to see the progress. It's always a roller coaster of good and not so good, but for the first time in a long while I'm seeing some strides made and so very encouraged.  Today Dr. K told her "I expect you to be singing by Friday" 😁 

Last night I was honored and blessed to be able to go to a "Momcology" dinner sponsored by a Foundation "Courtney's Courage".  It was humbling and encouraging at the same time to visit with other moms going through similar situations.  It was amazing to get out of the routine of the hospital and Ronald MacDonald house and put on some nice clothes.  I was going to do makeup to but alas I left if in Sydni's hospital room ha ha.  I did have a little lipstick so that was good.  Anyways, it was a very special treat and so thankful Aunt Laura came and sat with Sydni so I didn't feel guilty for leaving early.  Once again can't thank God enough for my amazing family, friends, and even strangers for the love and support.

Journal entry by Sydni Lee

Thursday July 26th was a series of bizarre happenings apart from the scenario playing out with Sydni at the hospital.  I was at the gas station before going to the hospital and there was a lady running down the street with two dogs, screaming to call the police because she had her apartment broken into at gunpoint.  She was visibly beaten up and bleeding and said the assailants were across the street in a car with the gun.  I stayed with her until the police arrived (which took 2 phone calls and 25 minutes).  Just not a great way to start the morning.  I went back to Ronald MacDonald house and would you believe that my "neighbors" (family in the room next to me) had an altercation regarding the care of the child they have in the hospital.  It was no small thing, including choking out a grandmother and the words "I'm going to kill you and kill you slowly".  Again, police called, bad guy arrested.  My point is , that as if I hadn't already felt like I was living in hell at moments, I was a bit overcome with feeling just surrounded by pain, suffering, and a very sick and twisted world.  I showered, prayed and off I went to the hospital trying to let it all go and get on with my usual day with Sydni.  Due to her blood pressure not being controlled by the medicine they did a Doppler on her kidneys and bladder to rule out other problems.  Her hemoglobin dropped in half since the day before and her ability to swallow had decreased.  The doctors told her that even though she feels like she can't breathe that the issue is that "You have chunks of your esophagus sloughing off"  Apparently this can happen after harsh chemo.  The sores are in her mouth, throat and all the way through the gi tract. It's been a horrific week of pain for her and gut wrenching to watch.  Friday morning when I arrived at the hospital it was more upsetting news.  Syd was in the worst pain she'd had so far.  The staff proceeded to tell me that she had fevered during the night.  They sent off blood cultures and unfortunately they came back positive for infection in the blood.  So she was put on antibiotics.  She also was put on iv nutrition due to not being able to eat.  She has had red blood transfused and platelets every day this week.  The crazy thing is that the platelets have been coming from the Red Cross in Phoenix (none available locally)and taking a long time to get here. The doctor was frustrated and had the staff call as to why.  So it turns out that when the red cross gets the blood sample and request that they have been having a hard time determining what blood type she is.  So we've learned that prior to transplant she was B+ but now she's partially A-.  Her blood type is literally undetermined at this point.  Thus, harder to find blood that she can use.  They sort of compound what she needs. As a side note all the blood banks run shortages in the summer so that's an issue for her now too.  So go donate some blood if you are able 😍 Anyways, this was so fascinating to Aunt Laura, Sydni and myself that her blood type is changing.  And the good news is (always focus on the Good News!) this means that the marrow is doing something!!!!!!!  So that's what we are taking away for now.  That's what I have joy in my heart about and will keep my focus on.  This is a detour.  It's going to take a bit longer for her to get where she needs to be but by the grace of God she WILL get there.

Journal entry by Sydni Lee

The process of curing familial HLH is, first, chemo to get rid of my messed up immune system. Then, to replace the immune system, I'm getting a bone marrow transplant, essentially letting me grow a healthy immune system from the donor's healthy cells. I asked my doctor exactly what they medically are looking to match me with the bone marrow donor and he said there's something called HLA that they have to match and then the donor has to match all 12 of my genotypes. Then, they have to match my tissue type and my blood type. Finding a match is every 1 out of 20,000. There are about 25 million people in the registry at the moment, which means that I statistically should have 125 matches. Then, they narrow down the matches to the healthiest people, which would be a young male. That's scary to me, but the more people sign up, the better the chances are :) To be a donor, you have to be from the ages 18-44. You can sign up at https://bethematch.org 
Sydni’s Story

Site created on April 3, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  
At the age of 6, Sydni had her first hospital stay with no explanation as to the cause.  For the next 9 years, she had episodes of unexplained illnesses increasing in severity and length of hospital stays.  In 2017 migraines prompted the doctors to do an MRI on her brain and spine.Sydni was officially diagnosed with Familial Hemophagocytic Lymphohistiocytosis ( Familial HLH) in March 2018.  Familial HLH is a rare disorder of the immune system.   It is a disorder of widespread accumulation of lymphocytes and mature macrophages, sometimes with hemophagocytosis, primarily involving the spleen, lymph nodes, bone marrow, liver, and cerebral spinal fluid. According to a large population-based study published in Sweden, it was estimated to occur in 1.2 cases per million.   Yes, my baby girl is one in a million.

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