Sunday, July 20, 2014

Lulu Started Interim Maintenance w/HD MTX

Lulu started her treatment Friday. This is Lulu with her child life coach. I called them "twinsies" with their matching outfits. 


Sunshine Kids were at the hospital helping kids make capes. This was a nice distraction because it was a "procedure day" meaning nothing to eat or drink after 9 am. Her procedure was at 12:00. She had a bone marrow check & spinal tap. We'll know the results of the bone marrow in the next few days. 


Lulu's friends came to visit Saturday. They figured out if they raised the foot of the bed they could make a slide. 





Sunday, July 13, 2014

How to Pack for a Chemo Slumber Party?

Slumber party? I have to add a light hearted spin to chemo treatments to avoid my brain focusing on the doom & gloom we have ahead of us.  I see it two ways. One, I could tell myself that Lulu has an upcoming hospital stay where they are going to inject her with toxic medicine.So toxic that as fast as they inject it into her spine leading to her brain, her heart, and orally with a pill we have to get it out of her system. So important to get it out that this round they will give her another medicine to help cleanse her body to avoid damage to other organs.  Two,  I could try and make some sort of fun adventure out of it. We're going to have a slumber party. Maybe we'll get to see some of your  friends and play outside . We'll be able to go to the playroom & even skate around on your IV pole.  Doesn't option #2 sound so much better?  I think so & my sanity does too :)

Fingers crossed this is the week Lulu can start what we call "phase 3" of chemo. (Formally known as Interim Maintenance with HD MTX ... 63 days) See why we just say "phase 3".

The "must haves" (tried uploading a photo, but not able to on my phone) You cam find pictures at facebook.com/teapotsandtoads

1- Sanitizer -  attached to the strap so it's one less thing to pack since it's already attached!

2- Sensi Care Sting Free Adhesive Remover - This is a new product for us recommended by the Momcology FB page. We're hoping this helps with the large bandage they place over the port.

3- Masks - Never leave home without these guys. I keep a supply in my glove box too.

4- Minky Wipes - Hospital tissues feel more like sandpaper :/

5- Chapstick - Chemo side effects,  Lulu always has chapped lips.


Hope this helps you pack or offers some gift ideas if you know another child battling leukemia.

Friday, July 11, 2014

Cancer Cluster Map of America

It's a slow start, but it's a start. 

Please share my blog with others & I'll keep building a database of children diagnosed with cancer. If there is a new cancer cluster I'll pass on the info for investigation.  

I have a couple children so far. If you know of anyone please email me … 

teapotsandtoads@yahoo.com 

subject: cancer cluster

Include

zip code
diagnosis 
dx date
date of birth

Zip Code  Dx Dx Date
92584 High Risk ALL  3/3/14
94513
Undifferentiated soft tissue sarcoma
12/3/09
95602
Stage IV Hodgkins Lymphoma
5/5/10




Wednesday, July 9, 2014

Chemo Induced Peripheral Neuropathy with Restless Leg Syndrome

We noticed a few weeks ago that Lulu was kicking her legs & tossing and turning in her sleep. Reminded me of when she was younger & throwing tantrums, but she was dead asleep. After a night or two of this I started asking around on other ALL blogs. One recommendation was checking her magnesium levels, but those turned out ok.

Here's an explanation I found that best describes what's happening to her body.

"The chemo does not actually damage the nerve endings, but rather kills the "lining" or "insulation" around the nerves, so that they are sort of "raw," similiar to a power cord having an exposed section.  It is literally those small nerves "shorting out" between one another.  This usually effects mostly the "digits," or finers and toes, and goes from there. "

You know that test they do in the doctors office where they tap the knee. Well tapping Lulu on the knee gives zero results. If there is no response to the knee tap, it indicates nerve damage. She has peripheral neuropathy. This is a result of the chemotherapy she receives. How to prevent permanent damage, I have no idea. I'm all about short term relief.

Here's the cocktail we've been doing with Lulu and seeing positive results. Use at your own risk. I'm no MD, just a mom trying to help my kid naturally.

1) Lavender infused almond oil. I bought some lavender at Sprouts and mixed 2-3 drops with 2 oz of almond oil. I massage Lulu's feet nightly. Sometimes it can put her right to sleep.

2) Baking soda & epsom salt bath. I pour about 1/2 cup baking soda and 1/2 cup epsom salt in her bath 3-4 nights a week. I added this after reading this blog.

3) Water with lemon. Lulu prefers water with lemon juice, so this was an easy one for us. We recently spent a week in the hospital because Lulu had a fever. She wouldn't be released until her ANC fully recovered. In order to get the nurse to turn down her iv fluids I had to have Lulu drink 8 ounces of fluids every 2 hours + food. This was on a 8am-8pm schedule. Seems like a lot, but it's what was needed to keep that iv fluid down. Whatever it takes to get out of the hospital! We were given these awesome magnetic dry erase boards and now keep a food & water log throughout the day. Highly recommend if you have to constantly encourage eating & drinking throughout the day.

4)Personal trainer. After discussing with the doctors Lulu's muscle and weight loss she put in a referral for physical therapy. Lulu was struggling climbing up the stairs. She would favor one leg and still bear hug the hand rail all the way up & down. In addition she fell down a few stairs which scared the heck out of us. She was a very active girl prior to her dx. She completed at 5k mud run last summer, so seeing her struggle with simple tasks was heartbreaking. For the last few weeks she has been doing 45 minutes of training, once a week & seeing great results. I highly recommend & well worth the extra money. Her confidence has increased and she is now able to walk up the stairs without assistance. Lulu is enjoying is too and you'll find her doing exercises on her own at the house & giving daddy a few workout tips ;)

Hope these are helpful !