Parenting through Chronic illness, you are not alone

People are always asking me how is Dylan since his transplant. I know I havnt posted for a long time and given an update. 28 September is Dylan’s 2 year liverversary.

I have always been a very private person and generally don’t share what is going on as I have always found I get so overwhelmed by everything that it is easier to say nothing. But since his two year anniversary I have decided to share our story and journey. There are many reasons why I have chosen to share this story but mainly if it will help someone else going through something similar and that you don’t feel so alone and secondly to bring awareness of PSC and liver disease as well as organ donation.

Becoming a mom isn’t just about giving birth. It is the day that you realize a part of you is now vulnerable. A piece of your heart is out there for all the world to see. And as a mom it is your job to protect, nurture, guide, love and teach.

I remember that first moment I held Dylan in my arms. My heart literally jolted. I had been so scared of meeting him and was so worried I would not know what to do or how to be a mom, and then I saw that face. I knew that face, I loved that face, I could do this.

All I wanted to do was hold him and look at him. I couldn’t believe I was a mom and this magnificent wriggly little creature was mine. I remember vowing to myself that this little guy was going to have a golden childhood, be a happy carefree child and I was going to be the worlds greatest mom. He was going to be the smartest, most talented, happiest kid around. I wanted him to have a childhood filled with wonderful memories.  Every kid deserves to be worry free and happy. To feel secure, safe and loved. To be healthy.

And so our journey began. From day one, this kid had me laughing. There was always something he was doing that was funny, cute, magical and adorable. He was the happy healthy busy boy I had always wanted. He was my miracle child. My rainbow baby. Each day was a new adventure. Little did I know the nightmare rollercoaster ride we were about to embark on.

When Dylan was 5 years old I noticed one morning that his eyes looked slightly yellow. I thought I was imagining it but the next morning I noticed it again. We went straight to the gp who did blood tests and all his liver enzymes came back highly elevated. We were referred urgently to a paediatric gasto- enterologist. He was admitted straight away into hospital and a variety of tests done on him. All the while Dylan was getting sicker. He was very jaundiced and felt weak and nauseous all the time. Over a 6 month period he was in and out of hospital having scans and scopes, ultrasounds, biopsies, colonoscopies, Ct scans, MRIs and a variety of other procedures. He was having blood tests practically every day and eventually they were taking blood from his feet as they couldn’t find veins in his arms. After exhaustive investigation we got the devastating news that Dylan had a rare disease known as Primary Schlerosing Cholengitis (PSC) with auto immune hepatitis. PSC is a degenerative disease that affects the bile ducts of the liver. To date there is no cure for this disease. Symptoms include jaundice, nausea, vomiting, joint pain, liver pain, itchiness, fatigue, ascities, to name a few.

Of course my first instinct was google. Once I had totally freaked myself out with the facts from google I thankfully found a support group on Facebook.

Those first few weeks after diagnosis I pretty much cried all the time. I sobbed. I raged. My mind would not give me any rest. To the world I put on a brave face. I was super mom. I could handle this. I was in charge. But in reality, I was a mess. My son might die and I had no power to fix this. I had promised this boy a golden childhood and with the pick of a not so lucky straw he had been dealt an ugly deal.

Once we knew what we were dealing with Dylan was given a bag full of medications that he had to take daily. I had to come up with tricks and creative ideas to get a 5 year old to take tablets. Each tablet that he took was to help with the symptoms of his disease. There were the 3 tablets to help thin the bile, the awful tasting powder to stop him from itching, the nausea medication, the vitamins…… and that was just the morning medication.

Slowly he started to feel better and his liver seemed to settle down. He went back to school and on the most part he seemed happy and better.

And thus our new ‘normal’ began.

Every 4 weeks, Dylan had to have blood drawn.  Every month he had to see the doctor, every 30 days I held my breath wondering what the news would be. If his blood results showed any changed, his medication was altered or he was admitted to hospital for biopsies or scopes or scans. I taught myself how to interpret the blood results so I understood if something increased or decreased, what the significance of it was and what would be needed to be done. I became expert at measuring medications and timing doses. I started understanding the medical lingo and it became part of my vocabulary. We started to know staff at the hospital on a first name basis and the cafeteria staff knew how I loved my cuppacino.  Hospital became familiar and comfortable. Dylan in the meantime started learning how to control his drip and how to administer his own meds through the drip.  He learnt the hospital menu practically off by heart and knew exactly who had the control for the aircon and which nurse was in charge of what. He would always discuss with his anaesthetist which medication he did and didn’t want and he knew the names and how each affected him.

For us this became normal. For me, as long as things were stable, I was happy to go along like this…..as long as things were stable………

Having a child with a liver disease is like living with a ticking time bomb.

Tick tock…tick tock…tick tock. All day every day.

There were no gaurentees about what the future held. We had to live each day one moment at a time. Every morning I would look for signs of jaundice, every stool or urine passed was checked for colour and consistency.

If Dylan got a cold we couldn’t just go to the doctor. He would have to go to his specialist to check first how he was and what medication he could have that would not be harmful on his liver.

If he cut his finger, it took longer to heal, if he knocked himself he bruised easier, he had frequent nose bleeds and often vomited from nausea.

If he got a temperature, he would usually be admitted into hospital as more often then not the infection would affect his liver.

If we wanted to go away I would have to check first with his doctor if we could and we would only go to places that were close to medical facilities.

As Dylan got older, it seemed that his disease, PSC was progressing very slowly. The medication he was on was controlling most of the symptoms and his blood results were coming back with little to slight change from month to month.

He didn’t have a lot of the symptoms associated with PSC. His doctor visits, hospital stays and blood tests had become further and further apart and I had convinced myself that this was how it was going to be for Dylan.

The thing with PSC is that it is one of those diseases that has no typical pattern. There are patents that have had the disease for 30 years plus with little to no symptoms and others who have been sick from day one and get transplanted with in months of diagnosis. Some patients have stents and ascites, heart problems, kidney failure, develop diabetes or epilepsy or some other medical problem. They need drains and ports and surgeries and have multiple complications and others don’t.

It seemed to me that Dylan was one of the ‘lucky’ ones.  He had never developed strictures or portal hyper tension. He never needed to be stented or drained.

When Dylan started Grade 8 it was an exciting time,  he was now in high school and was looking forward to being a typical teenager.  End of March 2016, the jaundice started again. Dylan started to feel sicker than he ever had before and blood tests revealed that his liver was battling. As he got sicker, the doctors tried a variety of medications and procedures to see if he would improve. Nothing worked. He was not improving. A biopsy and MRI confirmed that he was going into full liver failure and cirrhosis of the liver was starting. May 2016, his team of doctors reviewed his case and it was agreed that the only way forward was a liver transplant.

The Model for End-Stage Liver Disease, or MELD, is a scoring system used by doctors for assessing the severity of liver disease. A score below 17 is usually considered still ok and generally patients are not listed for transplant below 17 unless there are special circumstances. Between 17-23 is when things start looking bad. This is when patients are usually listed. Above 23 is considered critical. March 2016 Dylan’s meld was 18. May 2016 it was 21. Dylan’s health was declining fast.

To be listed for transplant is a process,  firstly we were assigned a transplant co-ordinator. Mary our co-ordinator sat down and explained the process to us. Dylan would be listed for a whole liver but we would also look at living relatives to see if anyone would fit the criteria to perhaps be a living donor. The liver is a remarkable organ and can regenerate itself back to full size within 6 weeks. Our family is very small and we did not have any viable living donors.  To start the listing process, Dylan needed to have his heart checked, needed X-rays  and biopsies and a very large amount of blood tests done.  They needed to rule out any possible complications or medical issues. We both had to go for physciatric evaluations to see if we could cope mentally.  Our whole family as well as close friends had to attend an educational morning to know all the info about before, during and after transplant and get the chance to answer questions. And then there was the paperwork. Document after document needed to be signed. Finally 20 July , Dylan was listed for transplant. His meld was now 23.

When you are a patient waiting on a transplant list, your whole world changes. Firstly I had to deal with the emotional reality that essentially we were waiting for someone else to die so my child could have a chance to live. I have to be honest, I tried not to focus on that a lot as I needed to cope from day to day.

Secondly your whole world gets reduced to the importance of your cell phone. All of a sudden my phone became my capture. It could ring any time of day or night. I couldn’t miss that call. I needed to make sure my phone was always charged and always with me at all times. Sometimes I would leave a room and then realize I had left my phone in the other room and run back in a panic, convinced that in the 5 seconds I didn’t have my phone with me, I had missed a call. I would jolt awake in the middle of the night and grab my phone convinced I had slept through a call.

Also all of a sudden each and every detail of daily life had to become planned. I needed to ensure that if we got the call , someone would be able to look after my dog at a moment notice. Being a teacher, I had to inform everyone that if I was in the class and got the call, I would need to leave straight away. I had to make sure I always had petrol in my tank and a fully charged phone. Little things like going to a movie or the hairdresser all of a sudden became a mountain. What if the phone rang while I was in the middle of a haircut. I would have to leave. Also I couldn’t be too far a distance away from Dylan or the hospital. Our lives revolved around waiting for the call.

And then the phone rang. 25 August 13h30. “Ruth, its Mary. We got a possible viable liver. We need you at the hospital immediately to prep Dylan for surgery.”

We rushed to the hospital. I had phoned the family, packed the necessaries and we were off.

There is always a protocol before transplant surgery. Dylan’s general health needs to be accessed to ensure he is healthy enough for surgery. Blood tests, X-rays and medical history is done. Then more forms to fill in and sign. Then the doctors consultations. Firstly Mary came to explain about the liver. This liver was a large one and would need to be split for Dylan to get the smaller portion. Once the organ is harvested, it is transported to the transplant facility where the surgeon then assesses the liver. The liver needs to go through a variety of checks to ensure it is suitable for the donor.

The anesthetist then came and chatted to Dylan about the procedure, the medication and answered our many questions. And then we waited. Would the liver be viable?  Could it be split?  What time would it be arriving? What time would we know?  Dylan was fully prepped and medicated, ready for surgery.  The family was all there.  We were all waiting. 7pm we got the news that unfortunately the liver could not be split so couldn’t be used for Dylan. We returned home. Dylan’s meld was 25.

We knew because of his age and his meld that Dylan was top of the list and it wasn’t very long when the second call came in. 16 September, could this be the one.  This time everything happened quickly. We got to the hospital at 6am and by 9pm were on our way home again. This liver was a comprised liver not suitable for transplant. Not suitable for Dylan. His meld was 27.

11 days later Mary called again. “Ruth we got a liver and it’s a good one.”  Bags were packed, calls made and off we went again. Dylan’s meld was 28.

This is the post I made 4 days after surgery. It sums up this part of our journey. 

It is hard to believe that just 4 days ago Dylan went into surgery. What a journey we have travelled. 

As I look at Dylan I am amazed by how he looks.

The anesthetist took pictures for us of his old liver. We were shocked at how bad it was. It is incredible that he managed to keep going with a liver that was essentially dead. 

I asked him this morning if he has any symptoms from his disease. He said no. No more itching, no more aching joints, no more nausea and vomiting, no more exhausting and feeling so sick. 

All of this is thanks to his incredible team of surgeons, doctors, nurses as well as all the dedicated staff at the Wits Donald Gordon hospital. We are very blessed to have the most incredible team. Prof Botha is the most humble kindest man. He is not just a plumber as he puts it, you are a hero. You are our hero. 

Tonight is the start of the Jewish new year Rosh Hashana. It is a time to reflect on the year and ask forgiveness for any sins or wrongdoings we may have had. As we go into the new year, not only do I need to ask forgiveness but I need to give thanks. Our precious miracle happened at just the right time. I am not religious, I do however believe Dylans miracle was all thanks to the grace of Hashem. 

His recovery so far has also been remarkable. If all keeps going well, he should be moved to high care soon and then to general ward and then home. 

Since Tuesday afternoon when we got the call that they had a liver, I have felt a calmness come over me. I just knew this was going to be the one and he was going to be ok. I have had such a strong sense of comfort and can feel my self surrounded by the power of everyone’s prayers, good wishes and kind thoughts. 

Every once in a while I get goosebumps over my whole body. 

I know we are not alone. 

Through this whole process, I am honoured and humbled to know that there is another family out their grieving for their child. And in the midst of their grief they made the most incredible hardest decision no one should ever have to make. It will take me time to process the enormity of the situation. 

My heart aches knowing that our special gift came at a huge price to another family. I will be eternally grateful to a family that we will never know and forever mourn a child that we never knew. 

Dylan’s donor will always be with us. By accepting this liver Dylan will be able to continue living and please G-d have better quality of life. He will honour his donor by living a good life, being a strong, kind, loving man and most of all humble and giving of himself. He will respect his body and honour the privilege that he has been given. Not only will he live for his donor he will live because of his donor. 

As a mother you will do anything to protect your child. When Dylan was first diagnosed at the age of 5 with Primary Schlerosing Cholengitis with Autoimmune Hepatitis, my world fell apart. I was unable to protect him from this rare disease. For 9 years he has lived with this disease. He has felt horrible for years and there were a lot of things he couldn’t manage like most other children. What has always amazed me is how Dylan never questioned his illness. He just got on and did his thing. The very first time he asked me why did he get this disease was a week ago. 

A lot of people were shocked to find out that Dylan has been a sick boy for so long. I always tried to make sure that Dylan wasn’t defined by his illness and would not allow PSC to control him as a person. He needed to be know as Dylan. The kid with the gorgeous red head, cheeky grin and quick sharp mind. The kid who never misses a beat, who is as sharp as a whistle and lovable, curious and brave. I didn’t want him to be known as that sick kid. He also always just gotten on with things and pushed through. 

This amazing spirit is shining through each day as he recovers. The Physio says let’s do one lap round the room, Dylan says let’s do three.  The doctor says another day in icu, Dylan says no. The nurse says he can eat and he is ready to have 3 course buffets. His will to live and fighting spirit amaze me. I am proud to call him my son. 

I would like to wish all the Jewish community a Shana Tova. I would also like to thank each and every person for your thoughts prayers and kindness given to us. 

So many people have asked what they can do to help. 

To end off I would like to share a story. The night before surgery as Dylan was falling asleep he turned to me and said ” Mom, if the worst should happen, please make me 2 promises. Please tell my whole family I love them and please make sure I am an organ donor”

For both Dylan and myself if just one extra person registers with the organ donor foundation because of Dylans journey, that would be the best help in the world. 

So when you think what you can do to help, I ask you to consider registering with the organ donor foundation. Organ donation saves lives.

It is 2 years since Dylan’s transplant. Since transplant it has not been an easy journey. For the first few months Dylan still battled with exhaustion and slowly had to build up his energy and strength. About 9 months after his transplant he was diagnosed with ulcerative colitis. (UC) This is a disease of the colon where ulcers form inside the colon and cause pain, loose stools and loss of blood. He has spent a large portion of time in and out of hospital as they try to get the UC into remission. Thankfully his liver is doing really well. 

With all his health complications Dylan missed a lot of school. This year it was decided to let him repeat grade 9 in order to give him a chance to catch his breath and catch up. This too has been a bumpy journey but hopefully we are seeing light at the end of the tunnel.

Through it all, Dylan has persevered. Of course there have been days when it all became to much for both him and me but most days his strength has helped keep me strong and visa versa.

I want to finish off this post with a special message to Dylan. 

Every once in a while someone rare, unique and special is born. Being unique isn’t always fun, being strong not always easy but you seem to make it look effortless.

I am so proud of who you are and how you have travelled this journey so far. Yes there are days that I wonder if I am going to survive being a mom to a 16 year old teenage boy but I wouldn’t change you for the world. (Although it would be nice if you listened to me sometimes)

I am so excited to see where the next part of your life journey takes you and am looking forward to seeing this young boy grow into an amazing man.

Always remember be good, be kind, be loyal and be true. 

Never make a promise you can’t keep. 

Respect yourself as well as others. 

Work hard and you will see the results. 

Love yourself. Love others. 

Money isn’t the most important thing in life. 

Don’t judge on appearances. 

Remember to say thank you. 

Value your family. 

Value your friends. 

Value yourself. 

Don’t be afraid to say no but also remember to say yes. 

Always be honest even if it is hard. 

Know that you are loved deeper, harder, more than you will ever realize. 

I love you. 

Contributed by Ruth Beinart of Clamber Club Sports – Linksfield
Cell: 082 892 7973
Email: sportslinksfield@clamberclub.com 
Website: www.clamberclub.com

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