Getting Fit

Lulu lost a lot of muscle when she was initially hospitalized back in March for her 30+ days of treatment. When we returned home she was unable to walk up the stairs or even get up off the floor without assistance.

Balboa Navy Medical Center (Balboa) does not have adequate facilities to treat children with cancer. Our insurance refused to send her to Rady Childrens Hospital even though it was 10 minutes away. Children being treated at Balboa are confined to their rooms on the pediatric ward because of their low immune system. The doctors feared she would catch something from another patient, so even asking to go outside was rarely allowed. Doctors feared she would catch something doing the walk from her room to the elevator doors. I think on two or three occassions we were given a wheelchair, since Lulu wasn't able to walk more than a few steps, so get some fresh air. 

Rady Childrens Hospital has its own cancer floor where everyone has low immune systems, away from children that have anything contagious that could harm them. They even have a playroom that gets sanitized frequently so that Lulu can socialize with other cancer cuties like herself.

When Lulu was at Balboa I asked for a physical therapist because she was wasting away to bones. We were able to have someone come once a week to work with Lulu. It was a great idea, but a disaster. At that time Lulu's hair was falling out in clumps and housekeeping came once a day doing minimal cleaning. The physical therapist was having Lulu stand, with assistance, and toss a bouncy ball back & forth. Picture a dusty floor with hair clumps and a ball bouncing around. Gross, right? She also recommended floor exercises, so we would grab a hospital sheet and spread it out. As soon as a hairball came rolling by like a tumbleweed, that ended that exercise. 

Fast forward to mid April and Lulu was bumped up to high risk (the chemo treatment wasn't getting rid of all the cancer like it should have). Since Balboa can not treat high risk patients we were transferred to Rady Childrens Hospital. In the mix of transferring the first focus was chemo, then vision testing (she had blurred vision from the leukemia & high blood pressure), and finally getting her taken off her seizure meds. (seizure meds were prescribed when she had the seizure after an extremely high blood pressure). Getting her back with a physical therapist took a back seat.

A few months after being at Rady's I asked for a physical therapy referral. That process took some weeks and we were authorized to see the physical therapist at Radys. We're 70+ miles from the hospital so that didn't work. Another referral was put in for a local facility. While all this referral mess was going on I asked my trainer if she would help & she agreed. Insurance snubbed the idea of a personal trainer because "they don't know childrens bodies". This is far from the truth. Erin has been so helpful with building Lulu's strength. She can now walk up the stairs by herself. Lulu also has nerve damage in her legs which causes her to collapse to the ground simply walking around the house. This was a HUGE self esteem crusher for Lulu. HUGE. With Erins training, Lulu's stumbles and falls are rare. Thankfully, she loves working out with Erin. It may be because Erin makes it fun and dresses up in costumes, then lets Lulu keep the costume.

Troy & I are very thankful for all the fundraising done when Lulu was first diagnosed. It has allowed us to provide Lulu with services when she needs them, not when insurance is ready to improve them. For that we are greatful! Thank you!

MiraLAX for Kids

MiraLAX is approved by the FDA for

• over-the-counter use for occasional constipation
• use in adults and children 17 and older
• recommended for short term use up to 7 days.

MiraLAX is also known at Polyethylene Glycol 3350 (PEG 3350)

Lulu and many other kids receiving chemotherapy are prescribed PEG 3350 for constipation. Lulu was prescribed 17 grams in 8 oz. of water and to drink daily. After learning more about PEG 3350, we decided to stop giving it to her. I don't want her to get constipated, but I'm just tired of all these meds and SO IS SHE. I hear it daily.  I discussed with her doctor that we were having success keeping her regular with her diet and as long as she is not having constipation issues, she was fine with us using "as needed". Thankfully, we haven't needed to use it. 

I make sure she is drinking lots of water daily. In the hospital I make sure to order pears. She has the choice of eating pears or drinking medicine. Saying that usually does the trick and she'll eat a few bites for me. She use to enjoy Chocolate Peanut Butter Cookies from Oh She Glows. They work really well, but tastes buds change frequently and those haven't been requested lately. Lulu loves California Rolls & Shrimp Rolls from Hana Sushi. The seaweed is great for digestion. I just ordered the Sushezi to save a couple bucks & let her make rolls at home. 

Here is more information from the grant opportunity for The Use of Polyethylene Glycol in the Pediatric Population (R01)   It states in the background that Ethylene glycol is a precursor for synthesis and a degradation product of PEG. 

• Ethylene glycol is known to be neurotoxic in children
•  (alters the normal activity of the nervous system)

• Ethylene glycol poisoning causes metabolic acidosis with an increased anion gap. 
• (when too much acid is produced or not enough bicarbonate produced)

If your child is prescribed MiraLAX or Polyethylene Glycol I encourage you to print off the grant information on the link above and discuss with your doctor. 

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. 

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.

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

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 !

Cancer Clusters ? Help me make a simple map!

Cancer Clusters. 

I want to learn more, but I need your help. I want to make a map of Americans under the age of 18 that have cancer. Keeping the first map simple and easy to read. I will try and update the map weekly & post here on the blog. Here's some simple steps for the first map. 

Step 1) email me teapotsandtoads@yahoo.com
Step 2) subject " cancer cluster"
Step 3) provide (a) date of birth (b) date of diagnosis (c) zip code  where you diagnosed (d) zip code of prior residence if "c" is less than one year (e) diagnosis

Example using Lulu's info
A - 10/20/08
B - 3/3/14
C - 92584
D - not sure of the zip code, Netzaburg Germany
E - high risk ALL


Thanks for helping me ! 

Acute Lymphoblastic Leukemia - High Risk

What a title, right?

This was our daughters diagnosis in March of this year. It has completely turned our world upside down. We take things one day at a time and can tell you approximately our plans for the next two weeks. Anything past two weeks is a gamble because she's so fragile.

She earned the high risk part because after her first phase of treatment leukemia remained. Now that we are at a new hospital, we learned that Lulu should have been treated as high risk from the start. It's a difference of professional opinion, I guess. As parents you just want the best for your child and we're very happy to be in the hands of new doctors.

Why am I sharing this info?

I began sewing when Lulu was a baby. I wanted to make cloth diaper covers for her. They were turing out pretty nice and to support my new sewing hobby I decided to start selling them.  As Lulu got older my sewing projects changed. I moved on from diaper covers to snack bags. Things have changed once again, so I'll be adding more products. I will also be sharing what has helped keep her comfortable while battling leukemia.

I'm a parent. I knew NOTHING about leukemia until it smashed into our lives on March 3,2014. Science and pharmaceutical meds intimidate me. Nurturing, cooking, and sewing are my strong points. I need to focus on what I can do. I'll try and share along the way so that it can help others. This blog has been super helpful when Lulu was done with her 32 days in the hospital and ready to come home. It's helpful to have a parent resource.

Lulu should be waking up soon, time to get morning medicine ready.