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. 

Aubrey- 2 months

Aubrey girl, 2 months! 
10 pounds 7 ounces
22 1/4 inches

You love to sleep! I can't say you ever had your days and nights confused,  I just wish you slept for longer periods.  Your longest period of sleep is about 5 hours, but after that you are back up every hour during the night.  The progress we have made it you are sleeping in the pack and play for that first stretch of the night, swaddled up nice and tight, then after I feed you you begin fighting the swaddle and sleeping with me.

You love to watch your brother.  I hope he is always someone for you to look up to.

Your smiles are few, but you do have a content pleasant look.

You have outgrown your newborn clothes and are wearing 0-3 months.  I am already feeling you are growing too fast and will likely be in the next size next month :( You wear mostly cloth diapers, but we had to start using disposables at night, and when Daddy changes you.

We are having many problems with you spitting up, but luckily no more scares.  However, all the spitting up has caused you to have your first "cold".  The bulb sucker is worth its weight in gold and then a lot more.

 

Tummy time is always a fail, but you do work those neck muscles when you are sitting up with us, or laying on someone.

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?

Happy Fall Ya'll

Yup.  I told you I was excited about the fall.

How about all the Holidays coming up.  I really debated the other day when I was in Carters if I was going to get Aubrey a costume this year (they were half off!) or if I would just dress her in festive clothes.  No Costume yet.

Here are some of the designs I have been working on for the upcoming Holidays.

My 1st Halloween Onesie

Zombie Boy Applique

 

Can be added to long sleeve or short sleeve shirt or onesie

My personal favorite!

 

 

Which do you like best?  Email me to place your orders.

Calling all Lefties

The part I hated most about teaching kindergarten wasn't crying children on the first day (or first 30 days) it was always realizing I had a leftie (or 3!)
I never felt I could help them learn to write or use scissors.

Today I am failing my child. Please someone help me show my child how to hold a pencil!




I'm trying to help him, it just doesn't look right.

Hand dominance usually develops between 2-3 years. I am not positive Liam's is set yet. He still continues to switch back and forth between hands and although I do not force him to use a particular hand, I do encourage him to choose the hand he wants to use and stick to it.

Unfortunately (for me) its usually the left hand. So I am pleading with all you lefties out there HELP!

Five on Friday {v.2}

 

Here are the 5 things I am lovin' this week.  I can tell you one of them is NOT my phone since I have wrote this post 3 times and it just won't save on my phone.

Number 1 PRESCHOOL
Liam started preschool on Tuesday.  He is going 3 days a week, 9-1.  So far he is having a great time.  I was a little nervous dropping him off on Tuesday because on the drive there he was asking if we were staying and not happy when I told him he would be staying with his teacher. 

But after drop off it was PARTY ON!

Not really.  I wish I could say I got more stuff done, but the little miss is quite demanding an              1 o'clock comes up fast!

Day 1 went well.  He came home talking about his new find Gabriella...of course when I signed him in the next day I found out there is not Gabriella in his class...

Day 2 he got right in the car and said what a good listener he was. Score 1 Liam!

Day 3 he lost his sticker for not listening... I hope he figures things out fast!





Number 2 SUPERHEROES

This week I revealed our special SuperHero shirts to support the real Heroes, children fighting for their lives.  When I began sewing it was to help pay for Liam's medical bills.  I always knew when he finished chemo I wanted to donate some of my profits to help other families.  This month, during childhood cancer awareness month, I am selling personalized superhero shirts.  Get yours today!

Number 3 PINTEREST
Our oven broke and its crockpot meals for us until we get it fixed.  Thank you Pinterest!
On Wednesday I turned the oven on to heat it for dinner, went to feed Aubrey, came back to put dinner in the oven only to notice orange flashed sparking inside the oven.  I shut it off and after it cooled down I opened it up to notice the bottom heating element had broken in  part, don't know how that happened.

Glad my house didn't explode, Happy to be alive!

Number 4 WORKOUTS
I am still having a hard time getting runs in.  By the time Brian gets home, Aubrey is done for the day; screaming.  I just feel bad leaving Brian with her, although I deal with it all day when she isn't happy, so I should just go get my time out and run in.
Anyway I do find it easy to get in a quick workout via Pinterest.

Hopefully we will get a treadmill soon so I can run during the day.

 

Number 5 FALL DECOR
Is it too redundant to be excited about Fall 2 weeks in a row?  No? Good!  I think Fall will make my list for at least the next month!  Of course Pinterest will once again come in handy for helping me decorate the house. 

First Day of Preschool

Liam had his first day of preschool yesterday.

At first I struggled with if we were going to put him in preschool or not.  I was going to be home so there is no need to pay someone to watch him.  As nice as it'll be to get to know Aubrey without a  3 year old climbing on me, I didn't want him out of the house. 

Ultimately we decided he needed the structure.  He needed the socialization.  So I called around, spoke with a few programs and found one that'll fit.  Liam is going 3 morning a week.  He even made a new friend today, he kept talking about Gabriella.

I leave you with our interview we did tonight.  This kid is going places...

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.