Being Thankful During Difficult Times

Our journey with this blog began over Thanksgiving 4 years ago, so I thought this week would be a great time to try again.

Every November people begin making lists of everything they are thankful for.  It occupies your Facebook newsfeed, it inspires self-awareness and discovery. 

I have had some many great, life-changing events happen in the month of November. 
November 13, 2004- Met Brian
November 26, 2004- First Date with Brian
November 24, 2005- Met Brian's family during Thanksgiving dinner
November 20, 2007- Closed on our first house
November 22, 2012- Found out we were being blessed with an Aubrey (Thanksgiving Day)

Even with all the great things that have happened to us in November, it is still a month I struggle through.  The one date that takes the most significance in my life is November 19, 2010; the day we heard "your child has cancer".  The year Liam spent his first Thanksgiving in the hospital. 

So through all this I work to tell myself- I am thankful for my home.  I am thankful for my family.  I am thankful for all the experiences this life has offered me.

Liam's Hearing

Liam has now had hearing aids for almost a year. Although I am not certain on the length of time he has been able to wear them, as it seems we are continuous sending them in for repairs.

Speech was never an issue, strangers could understand him before the hearing aids. But I have seen an improvement in his speech since receiving the aids. Looking at his audiogram, Liam cannot hear anything above the markings without amplification.

 The blue line being normal hear, the red line represents Liam's hearing

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He is missing about 9sounds, we chose to get him hearing aids because as a teacher I know the sounds he is missing will be the hardest for him when he starts reading.
We are now facing a new challenge with Liam's hearing . Insurance. We have just learned that insurance will no longer cover his hearing aids. So every time they break and the audiologist has to look at them I can expect a large bill. Not to mention he is growing and constantly needs new ear molds, also not covered.

I am really left debating if the benefit is worth the price. Which really isn't going to be a question in the end, but I may have to sell Liam to pay for his medical bills.

How Do You Tell Your Child He Has Cancer

A question I get asked a lot is if Liam knows what he went through.

It was his little body that went through the treatment and fought with such strength, but it's Brian and I that livesd the nightmare. Liam's scar is so faint he doesn't even know it's there.

Recently Brian asked when I thought we should have that conversation with Liam, when will he be vale to understand? As the cliche says; we weren't given an instruction manual for this.

With an appointment happening last week I started sharing some things with Liam. Currently he has an abdominal ultrasound every 4 months, we had been telling him we were going to get pictures taken of his belly but never said why before. Last week I decided to ask him if he knew why he has to get pictures taken of his belly. If course he didn't. Since he had recently had a stomach bug he has a recent experience with being sick. I explained to Liam when he was Aubrey's age he had something growing in his belly and it was making him really sick. He doctors had to take it out and why he has a scar on his belly. We want to make sure nothing starts growing again so we take pictures of his belly to keep him healthy.

I know he can understand more than that, but cancer is such an abstract concept.  What we tell Liam will continue to change each time until he fully understands.  We just want him to know about his history before cancer is associated negatively in his mind. 

Liam, You are a survivor.  You are my hero!

Double Layer Pumpkin Pie

I know Thanksgiving was last week and November is over, but I miss it already.  Thanksgiving is so special to us at the Fudge house!  2004-Brian and I went on our first date the day after Thanksgiving.  2005-I spent Thanksgiving with him the next year and met his whole family.  2006-Then we moved to Carolina and my parents came to visit us for Thanksgiving.  2007-We closed on our house the day before Thanksgiving. 2008- Brian's Family started joining up for Thanksgiving also.  2009- We announced the name we chose for Baby Fudge (William Alexander Fudge)

 

Then we took a bit of a dip in 2010 with Liam's cancer diagnosis. I still wasn't over the stress of that in 2011 and had a hard time relaxing and enjoying Thanksgiving, so in 2012 we went on a cruise, for me it was a way to celebrate Liam and all he went through.

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But we were missing my parents, they had to cancel last minute when they found out my dads cancer was back.

 

This year I was happy to return to our traditions of Thanksgiving and just celebrate being with the family we had there.  And of course part of the tradition of Thanksgiving includes food!

 





 

Woman (my mom) has been making a special pumpkin pie since the '90s, 1992 to be exact.  And what recipe could be better than one that came out of a random magazine



and this is still how we follow the recipe today.

Here's what you need


4 ounces of cream cheese, softened
1 tablespoon of milk or half-and-half
1 tablespoon of sugar
11/2 cups thawed coolwhip, whipped topping
1 Graham cracker pie crust
1 cup milk or half-and-half
2 packages or 4-serving  Jell-O vanilla flavor
1 can pumpkin (not the pie mix I accidently pictured!)
1 teaspoon cinnamon
1/2 teaspoon ginger
1/4 teaspoon ground cloves



Directions:

• mix cream cheese, milk and sugar in a large bowl until smooth.  Gently stir in whipped topping.  Spread on bottom of the crust.
• Pour 1 cup milk (or half-and-half) into the bowl, add pudding mix and blend well.  Mixture will be thick.
• Stir in Pumpkin and spices, mix well.  Spread over cream cheese layer. 
• Refrigerate at least 3 hours

What's your unique Thanksgiving recipe?

Dear Nemesis

November 19th, we meet again.

You tried to break me, but I was stronger.

I will never forget you, you have changed my life, but you changed it for the better.

My hero has came out on top of you. 

November 19th, you will not win. 

 

 

 

November 19th, 2010... The day we were told "its cancer"  The day we will never forget.  The day that did not win.

Childhood Cancer Awareness: The Best Days of My Life

We were at an even recently where I got to hear a father speak about his daughter. This girl went through 8 months of treatment for Neuroblastoma before losing her fight.  This father made a very profound statement, one I don't think can be understood unless you have lived through it. 

Roughly stated; Cancer gave me the best days of my life.

Again, as I would never wish what we have been through on anyone, I can not disagree with this man.

There has never been another time in my life that I have known so much love; from family, from friends... from complete strangers.
I've never know the amount of love inside myself.  There was so much joy felt in each smile Liam had.

I know that no matter how much money we inevitably spend on family photos, this will always be my favorite picture of Liam.  the innocence of a child who has no ide what he is about to go through, who at this moment only feels joy and love.

I know I said before, it was a time I really felt purpose in my life. I had taken a leave if absence from teaching to care for Liam during his treatment. I wasn't forced to go to a job each day, I didn't need to bring work home with me each night. I was able to just be there with my son.

Cancer changes your life, there is no doubt, but it doesn't have to ruin your life.

Childhood Cancer Awareness: Drew

Not long ago a friend of mine asked if she could share my contact information with a friend of hers, this friend's son had just been diagnosed with cancer.  So much of their story reminds me of Liam. 

Meet Drew; A little boy with a big story

In late April, Drew was admitted to the hospital for tests after having low blood counts following an ear infection.  Cancer was far from his parents minds, he just wasn't himself. 

Drew was diagnosed with Acute Lymphoblastic Leukemia.  He is undergoing a 2 year treatment plan, beginning with an initial 36 day hospital stay. 

He has struggled with his treatment, requiring extra hospitalization and at times requiring pain medication and IV nutrition.

I have yet to meet Drew and his family, but it is evident how positive this family is.  Drew and his family have our prayers. 

Childhood Cancer Awareness: Chemo Drugs

Fact: Most chemo drugs used on children were not developed for children.
Why?  Minimal funding is spent on childhood cancer research

 

Over the past 20 years, only TWO new cancer drug has been approved for pediatric use - Clofarabine (Clolar-Genzyme) in 2004 for ALL and Tenoposide (Vumar/VM-26-BMS) in 1990.

 

 

Two Thirds of Childhood Cancer Patients will have long lasting, chronic conditions as a result of the treatment.

 

So far Liam's only side effect from the chemo is a slight hearing loss

Getting new ear molds made

 

I wish we could see more research being done to offset these side effects

Like this one which could save the hearing of future hepatoblastoma patients 

 

http://www.cancerresearchuk.org/cancer-help/trials/a-trial-looking-at-lowering-the-risk-of-hearing-loss-after-cisplatin-chemotherapy-in-children-or-young-people-with-hepatoblastoma

 

Other potential side effects Liam may suffer; problems with his heart and problems with his kidneys

 

 





Childhood Cancer Awareness: Conner

In January 2012, Connor Jones was diagnosed with stage 3 non Hodgkins Lymphoma and was put on a strict regimen of chemotherapy which would continue out until April 2014.  His mother, Kylene Johnson, put life on hold to take care of her son taking him to various appointments and staying with him at all times.  The chemotherapy was working wonderful and Connor handled it like a champion.  He rarely complained and was so brave when it came time to get his treatment. 

 In July of 2012, we found out the chemotherapy had done amazing work and Connor was cancer free in just 7 months.  Connor still needed to get treatment done but not as often and was even cleared to go back to school.  He was so excited and was doing well in school.  He was so eager to learn.  He was far beyond his years.  His mother was able to start a new job and while she and Connor’s father figured out a good schedule, Connor was staying with his grandparents in Jacksonville, NC.  

One night Connor showed signs of a fever and was taken to the ER in Jacksonville.  The next day, he was brought back to Charlotte to see his doctor here.  Since he had a fever greater than 101.3 he was admitted to the hospital at Presbyterian children’s hospital.  Connor continued to get worse over the next several days and was put on a ventilator after his lung collapsed due to his liver swelling.  Connor needed to be put on a more powerful ventilator that Presbyterian didn’t have and was transferred to Levine’s children hospital.  He was successfully put on the oscillator and would remain on this for a few days. 

In those few days the doctors thought Connor had a very rare condition called HLH (hemophagocytic lymphohistiocytosis) based on his high liver enzyme numbers and several other things.  HLH is extremely rare only affecting 1 in 150,000 people.  The diagnosis of acquired, or secondary, HLH is usually made in association with infection by viruses, bacteria, fungi, or parasites or in association with lymphoma, autoimmune disease, or metabolic disease.  Since Connor had lymphoma and was still on chemo, his immune system was not able to fight this. 

Connor was put on so many medicines but since everything is processed through the liver and the liver had basically failed at this point, Connor only continued to get worse.  Connor passed away on March 27^th this year and he is missed every day.  We were able to keep him alive for 4 weeks and have more moments with him, most of when he was asleep.  He did wake up and we got to hear his sweet voice a few more times before he took a turn for the worst. 

Not many people know about HLH since it is so rare and we are determined to help the histio organization to find a cure.  If you would like to donate in Connor’s name you can go to histio.org and donate in Connor Jones’ honor. 

Childhood Cancer Awareness: Nolan

We were first introduced to Nolan right after Liam's diagnosis.  Our neighbor worked with Nolan's grandma.  The boys had a few things in common; same oncologist, same pediatrician, birthdays days apart.  Here's Nolan's story

After a long struggle to have a baby we were blessed with Nolan born on March 5th, 2010.
He had never missed a day of daycare from any illness and was a happy thriving little baby boy. When we took him for his 6 month appointment, our Pediatrician, Dr. Goins, felt what she believed to be a hernia. We were referred to a Pediatric Urologist, Dr. Perez, for a look to see what he thought. I remember reading hernia’s are common in babies and they are easily corrected by a simple surgery, never seemed like anything to be too concerned over. We were in the Urologist office by the end of the same week as Nolan’s 6 month appointment. When the Urologist felt the hernia, he described it as a hard mass and had a concerned look on his face. He gave us all the what ifs and cancer was one of the what ifs. I’m not sure about Keith, but I couldn’t bring myself to believe our baby could have cancer and this was probably just the Doctor being cautious and covering all bases to let us know what the worst case scenario would be. Nolan was scheduled for surgery the following Tuesday, one week after his 6 month appointment. Nolan was a trooper the morning of the Surgery, we were nervous. He was taken back to Surgery right on time, by the time we packed up our stuff and headed out to the waiting area we received a call from the OR. The tumor was completely wrapped around his testicle and there was no way to save it. Tumor…tumor?? I tried to reassure Keith, maybe tumor was just a term being used and we didn’t know what it really was yet. Everyone associates tumors with cancer. The Nurse came right out and we signed the consent to have his testicle removed. The actual surgery was over with really quickly and Dr. Perez reassured us we made the correct decision regarding the removal. He had sent the tumor to pathology for a quick test in order for us to have an answer whether it was malignant or benign. He would have the answer before we left the recovery room. We went back to see Nolan, while we were packing up we had our answer…cancer. There was no way for them to know what type yet and pathology would need a few days to determine. We were at Blume Pediatric Hematology and Oncology by the end of the same week.

October 1st, Nolan was diagnosed with Stage IV Neuroblastoma. He had another tumor on his right adrenal gland extending into the other half of his little body. The weekend before he began his long journey We took him to a local festival and he went to bang on a drum at Drumstrong, it finally sunk in at the point our baby was about to start a long fight at only 6 months old. We pulled ourselves together and kept positive for Nolan.

Dec 10th, Nolan began walking at only 9 ½ months of age and in the middle of chemo!
Nolan completed 4 rounds of chemo and went in for a tumor resection in Jan 2011, not all of the Tumor was able to be removed during the Surgery. Scans showed active tumor still remained after surgery, we just had to wait for the biopsy of parts of the tumor that had been removed. Because of the great communication between all the Doctor’s, we didn’t have to wait long to hear the news, the remaining tumor was maturing and dying off on its own, no more chemo!
Nolan remains cancer free after two years out of treatment! And even has a baby brother, Ryan born on 11-18-11!

Are you worried?

More often than I can say I have been asked if I am worried Aubrey would get sick. Is it possible for her to have cancer too? Although Liam did not have to gene for his cancer, I guess I was worried, but the worry started before Aubrey.

When Liam was going through treatment I didn't think we'd have another child, I just couldn't go through that again. I also didn't want to replace the experiences Brian and I missed with Liam.

Then when we decided to have another child, it was taking us a while to get pregnant. My doctor had wanted to see me back in December to discuss options, but we found out about the pregnancy in November, Thanksgiving Day. Even though it never made it to that point, I had already decided in my mind we were not going to have any medical intervention to get pregnant. In my heart I felt if I wasn't able to conceive another child it was God's way of protecting me- it just wasn't meant to be. Thankfully we were pleased with Aubrey.

I always knew if we were to have another child I would take a year maternity leave. It was very difficult to go back to work after Liam was born, even more difficult after staying home with him through treatment. As cliche as it sounds; I have seen how precious life really is. I knew I wanted to stay home with Aubrey during this early time and cherish every moment.

I don't think I will ever be the calm parent when it comes to my children's health.

 

I know the pictures are scary.  They are a reality of a time in my life that has changed everything.

What's Scarier Than Cancer?

Yes, there is no doubt receiving Liam's cancer diagnosis was the worst day of my life, but I was never scared for his life. I never entertained the possibility the cancer could take his life, even to the point I may never forgive the person who brought a "what to do when you lose a child" pamphlet.

So what could have possibly happened that would scare me more than cancer?

Earlier this week Aubrey had an episode. She was choking on her spit up. She had just woken up from a nap, I took her into her room to change her diaper when she started spitting up. I rolled her on her side so it'd come out but she still started choking on it. As I sat her up and began patting her back, her body was so stiff and she wasn't breathing. In my head I was thing "oh my God, call 911, no you can't call 911 you can't put her down, get her to breath, what if I can't get her to start breathing...." I could keep going on with my thoughts, but you get the idea. I can't really say how long this went on for because it obviously seemed like a lot longer to me, but after moving her into every possible position I could think of to help push the spit up out she did start coughing and breathing.

This was the scariest moment of my life. I really wasn't sure if I was going to get her breathing.

Everything checks out fine, the doctor thinks it was an isolated incident because she was on her back when it happened, but if it happens again (or ever to a child under 3 months) she needs to go right to the ER to be checked out, even if she appears to be normal afterward.

So although she has started sleeping better at night, I'm not sure when I will. I am not waking up frequently to make sure she is still breathing.

I think my new motto is "If she is screaming, she is breathing"

 

Your turn. What has been your scariest moment in parenting?

Childhood Cancer Awareness Month

 

                 

September is here.  It happens to be Childhood Cancer Awareness Month.  Isabella Santos mom said it quite correctly, awareness is a bullshit word.  I am sure I will see a lot of ecard sharing happening around Facebook

But really, how will that help the heroes who are fighting cancer?  How does an ecard improve their "quality of life".  Will spreading awareness help their families cope with their reality?  What about the treatments available to children?  How can we change "awareness" to "ACTION"

This month, in addition to Liam's story, I have a few other families' stories to share with you.  I always felt it was my job to keep Liam in others thoughts and prayers, I'd like to continue that with others.  

We were able to survive through treatment because of the generosity of others, multiple donations and fundraisers.  It has been my vision, through LCF Threadz,  to donate back to others.  This month I will be selling Super Hero Shirts, donating profits to a family fighting cancer.

$25 Short Sleeve $30 Long Sleeve

 

Email me for your Super Hero Shirt.  These shirts will be made personalized for your child.  Every letter is available in colors of your choice.

 

I will never

Things I said I would never do as a parent

Well lets just start this list off right.  I was never going to have children.  Was this ever truly in my heart? I doubt it, but being selfish was.  I loved coming home and napping. I loved not worrying about anyone else after a long day at work.  And lets face it, teaching 20+ children each day tests your patience, and I couldn't imagine having any patience left for my own child.

I will never co-sleep with my child.  I do not apologize for this at all.  The first time I co-slept with my child was Liam's first night in the hospital.  He was sick. He was scared. He was hurt.  The nurse came in every hour to check his blood pressure and temperature, waking him if he was ever asleep.  He just wanted to be held and I would have done anything to comfort him, I needed to be comforted too.

We are co-sleeping a little earlier this time.  Last night I was just so happy when Aubrey feel asleep I was not about to try moving her!

yup watching TV on the iPad

 



I will never let my child watch too much television
I already commented on this earlier this summer.  The most important part of this desire was not to allow the television to babysit my child, not necessarily never to allow television.  Well I can say today that Liam watches entirely too much television.  I hate it, I really do!  I just can't play with him and feed Aubrey at the same time.  And right now I am feeding Aubrey 22 hours out of the day.

I am sure if I asked my mom she would give me a list of 30 more things I said I would never do.  I don't care.  My children are safe and healthy.

 

John Ryan

Dear Brandon and Holly

When I got your message my first thought was Dear Lord, how could this have happened? Childhood cancer is supposed to be rare, how could this happen to someone we know, someone who supported us while Liam was sick.

When I thought about what to say, my mind kept saying " I have no idea what you are going through." Unfortunately we both know that is not the truth. The thoughts and grief I felt with Liam's diagnosis came back. Again how could this happen? I am reminded of my first thoughts after Liam's diagnosis- I never thought this would happen. It made me so angry when people would tell me "no one ever sees this coming". Knowing I was not alone did not help with the pain and grief I was feeling.

To say "Thank God it's only stage one" does nothing more than undermine what you are going through.

As a parent, you feel helpless in this situation- I cannot fix what is "wrong" with my child.
As a mother you feel guilty- I carried this child for 9 months, I breastfed this child. Everything in this child came from me.

It is not your fault and you are not helpless. With Liam's diagnosis I began writing here. It was my new job, my purpose, to keep Liam in everyone's thoughts and prayers; this is how I was going to help Liam through his treatment ( besides the obvious love and comfort he was shown).
I am beyond grateful that Liam has no idea what he has been through in his life.  I, on the other hand, will always feel defined by his journey.

This is why I write here today- please everyone keep John Ryan in your thoughts and prayers as he begins his fight.  Today JR begins his first chemo treatment.  This is a long road for the Harris family; JR will undergo 42 weeks of chemo and radiation.

Second Pregnancy

Having a second child after everything we went through with Liam was not an easy decision, for me at least. Liam's oncologist even discussed the new baby with me after she found out I was pregnant, it is completely normal to fear this child would be sick also.

Although this pregnancy hasn't been easy on me, I decided it was a trade off. I had an easy pregnancy with Liam then he had a struggle. So this time we are just getting the struggles out of the way early.

Last week I had an ultrasound to check the position of Baby Fudge.
Liam was breech, so we have a repeat c-section scheduled for the 24th, but the doctor wanted to check anyway. I have an apparent skill for growing breech babies as this one is too.

But during the ultrasound the tech also found the fluid around her to be low. It's not at a dangerous point just lower than they'd like. In addition to the fluid, Baby's stomach is also measuring small. This may be a result of the fluid level, or it may mean she is just skinny. Everything else is measuring as it should.

They of course do not want me to worry about it; yeah right!
So today I go for another ultrasound and "we'll see from there". Which pretty much leaves everything to the imagination, but there are 3 real possibilities.

1. I have been dehydrated and need to drink more water ( this is what the doctor is hoping for, but he obviously doesn't realize the amount of water I already drink)
2. The doctor will be sending me to a specialist ( but really with 3 weeks left, what's the specialist going to do?)
3. This baby will be coming sooner than expected.

We are so not ready for this baby to come yet!

Help us just continue to pray for a healthy baby.