General Tips:
- We saved all the fun gifts Amelia was given at the start of her treatment and rationed them out as "clinic prizes". That way she didn't get everything all at once and she had something to look forward too. I always have a clinic prize for Millie. I just got stuff from the $1 store when we ran out of gifts. She gets it if she does what she's asked to do by the docs, Open your mouth, look here, hold still, walk around, that kind of stuff. This always helped on the hard days. -Amanda
- Keep your barf bucket in the car at all times. -Rachel
- Start a blog. Blogging helps so much with keeping family & friends informed so you don't have to re-tell the painful stories everytime someone calls or visits. -Elizabeth
- Start a blog/carepage as soon as you can. It's an easy way to update everyone, a place to tell your child's story, and if you want journal your thoughts. -Amanda
- Take pictures. As much as you think you wont ever want to remember your child that way or see those pictures again you will be glad that you did. Its was hard to take a picture of Skyler so sick but Im glad I did because now I can see how far he has come, and one day he will want to see what he went through. -Crystal
- Legos are a great gift. -Rachel
- Hand sanitizer for family members! -Rachel
- Doctors and nurses arent gods. They do make mistakes sometimes so if you feel uneasy about something it is OK to speak up. They will respect you more if you do. -Crystal
- It's okay to admit it if you're having a hard day/week/month. In regular life, it can be bad to bottle things up. In cancer life, it can devastate. It's better to have a good 'cry day' as I call them! Or let yourself just be pissed off for a week or two. Work through it, for sure, but it's futile to try and pretend you're okay if you're not. Just learn to talk about it. -Wendy
- Find a pharmacy you like and stick with it. Explain your situation and they will go above and beyond to accomodate, verify drug reactions, recommend OTC products, etc.. Plus, you'll have another highly qualified person on your child's team. -Alisa
- As soon as you feel capable to write, start writing. In the beginning you will think you don't want to remember this and for me I just kept wishing it wasn't real. Writing things down made it real and that was hard for me. I'm so thankful for the little things I did write in the beginning, but I wish so much that I had done more. -Elizabeth
- Speaking of pharmacies, DO NOT USE PCMC's pharmacy. You may think it will be more convenient. You will be wrong. -Chelsie
- I keep all tucker's meds in a little portable Tupperware box with a handle on the lid, i just click it closed & i take his pills everywhere... i just never ever know if 1) he's gonna need anti-puke pills ASAP, 2)pain pills ASAP, 3) if i need refills, what i need refils on since they never seem to keep that info in clinic... 4)its a relief to have those pills with me just incase we are running late... ALSO there have been multiple times when we have been admitted, and when the doc comes to check you in... and they want you to know all the pills? we just go through the bucket. -Amber
- Other doc's will see & handle your kids, you'll have a "main" doc but they are "all" your "doc" -Amber
- There is a time and season for everything. This is your season to allow other people to serve you. You can serve others later. Speak up if there's something you need. People are searching for things they can do for you. You never know who has a spare baby monitor, or hand-me-down clothes (since your cutie may very well go up two t-shirt sizes during a month of steroids), or dog grooming equipment. Just ask around. Someone will jump at the opportunity to help you. -Wendy
- we made a spreadsheet of all meds/times/etc. We carried it with us, along with our road-map/calendar any time we went to the hospital/clinic/ER. Also, document everything....don't count on the hospital to keep track of everything as well as you would. -Alisa
- Accept help from anyone who offers, even if you think you don't need it. -Jill
- Vomit kit for the car. Our included: bucket lined with grocery sack for easy disposal, a couple of bottles of water for easy rinsing/cleanup, vinyl gloves for us to wear, rags, wipe, paper towels, Qtips. Sadly this came in handy more than once. Though a lot of these items are only needed if your cutie is younger. -Chelsie
- The best advice I can give any new mom is to be patient. This will end, mabye not today or tmrw but it will end. PCMC has some of the highest survivor rates. and Moms are the strongest people on earth. -Tabitha
- When people ask what they can do........recommend blood donations. -Alisa
- Get to know Robert. This is a must! -Chelsie
- Briana is right, continue as much routine as you can while inpatient. We had books and music and the whole shebang. It made a huge difference. -Chelsie
- I have also learned that although as mothers we need advice from other mothers going through this, that we can't compare our children's treatment protocol with anyone else's. Each child is different, will respond differently, and while there are specific guidelines in place, pay attention to your child and what his or her body is telling you. -Becki
- Also, be an active part of the caregiver team and go with your gut feeling when it may not always be in line with what clinic tells you. Just the other day, in fact, we got Nathanael's CBC results (we do blood work every week to make sure we can slowly increase his meds weekly). While his ANC was a whopping 2900, Robert, who does not follow him every week, decided to hold off on increasing meds because he didn't want to make a decision with Dr. Afify, Than's main doctor, being out of town. I told Tricia, the nurse who called me to tell me this, that I am sure Dr. Afify would increase his meds based on these counts and to go back and confer with Robert and Pam Harrison, the nurse that follows Than's case weekly. Sure enough, Dr. Afify had left a treatment plan IN THAN'S CHART before she went out of town that confirmed an increase in meds based on counts of 1000 or higher. I guess nobody bothered to look. You are your child's best advocate. I have learned over the past 2+ years that although everyone in clinic means to do the best for our children, that everything they tell you isn't always correct. So, it's okay to second guess. -Becki
- I got a little make-up bag that I filled with Cami's to-go meds. I take it everywhere we go. It has masks, zofran, oxy, extra chemo pills, benadryl, a thermometer, bandaids, emla cream and press and seal. I also wrote up a little instruction sheet on each pill and labeled EVERYTHING. I leave it with Cami wherever she goes. I cant tell you how many times I have been SO glad to have that little bag. Just the other day Cami was at her cousins house playing and they asked to have a sleepover. I was so glad she already had her chemo and everything else she needed so I didn't have to drive all the way back just to give her her chemo for the night. Also, if she got a fever while we were out and about we would have a thermometer and the emla cream ready. -Chelsea
Port tips:
A Portacath (or port) is a small medical appliance that is inserted under the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". Pros: the child can swim, take baths and be line fee when it is de-accessed. Cons: the child will have to be accessed (or stuck with a needle) each clinic appointment. This can be traumatic and sometimes painful.
- Port accesses are always traumatic events (things didn't start off smoothly with a port infection and then a home health care nurse who could never - no not once!- successfully access Elena's port) even though it's been a year and a half, Elena continues to struggle. I went to the store and got a bunch of little "prizes", treats, etc. (chapstick, little candies, stickers, candy necklaces, glitter pens, a yo-yo, etc.) and put together a "Treasure Basket" that Elena only gets to choose from for extra special things - like sitting very still and being brave for her port access (she wiggles and thrashes the whole time) and other things like that. It's a super special thing to get to choose from the Treasure Basket and it has helped with port accesses lately. -Brianna
- When putting the numbing cream on Amelia HATED the bandages they used so we started getting Glad Press And Seal. It's a life saver! It holds the cream in place, but doesn't hurt their sensitive skin at all when it's taken off. When it's time to deacess her PORT we use lemon oil and a cotton ball to take the adhesive off her bandage. The nurses think I'm nuts until the see it come right off. It use to be the part she dreaded the most and now she could care less. -Amanda
- I did want to mention that we tried the the Glad Press N Seal wrap on Nathanael's port area and it left him with a bad rash. So, it won't work well for everyone. We LOVE the tegaderm that comes in the dressing change kits. That works great for him. It's nice to have options, though. -Becki
- The first few times Daph was accessed she was traumatized. Mostly she seemed to hate that we had to take her shirt off. So I started having her wear shirts that buttoned up the front. So she didn't have to take it all the way off. Worked wonders. Now she doesn't care and just takes it off. -Chelsie
- The port was an issue with Ty until his home health nurse who is AWESOME and we always have the same one taught him that it is a magic sticker and shows it to him after she has pulled it out, the needle goes up and it just looks like a flat sticker. Then you just warn the nurse who is about to access that he doesn't know that it is a pokie, and most of them are really good about hiding it before accessing him. -Amy
Line tips:
is a catheter placed into a large vein in the neck. It is used to administer medication or fluids, obtain blood tests, and directly obtain cardiovascular measurements such as the central venous pressure. Pros: There is no 'poking' the child for blood samples or chemo. Con's: dressing changes, and the line cant get wet.
- As far as lines, Clay had a Broviac. I My hint with the Broviac is to not use the plastic covers to shower. I used suran wrap and tape. We never had a wet line after a bath. It molds to the body better than the other ones you get from the hosp or home health.
Steroid tips:
- We have found (and were advised by our social worker and other cancer moms) that during treatment, there are two sets of rules: steroid rules and regular rules. When Elena is on steroids, she has no control over what/how much she wants to eat, how she acts a lot of the time, etc. We set a few "always" ground rules like "you can't hurt others" and "you can't hurt yourself", but other than that, she pretty much got a lot of slack cut during steroids. We tried to get her to eat good things, be happy, etc, but she got a lot of breaks. She got to lay in bed and watch movies if that's all she felt like doing, eat continuously, etc. It doesn't last forever and as long as you try and be consistent and set some boundaries, they'll bounce back well when steroids are over. I tried to imagine how I would feel and what I would want to do if it was me feeling like crap. -Brianna
- Remember that evil steroid pulses (whether they be a month long, two weeks at a time, or once a month for five days) WILL end. Hang in there! -Brianna
Hospital stay tips:
- Never bring your own blankies, as we lost two of Darby's by taking them with us, getting them tangled in the sheets, and left w/o them. -Rachel
- Keeping a "to-go" hospital bag packed is a MUST. I went out and bought a totally new set of toiletries that we kept packed up and always ready to go. That way, even if we don't know if we'll have to stay, we had a bag that was quick and ready to grab on our way out the door. There is nothing worse than getting up there and being an hour+ away from home with nothing. And there is a "murphy's law" type of rule that says that if you come prepared and packed, you usually get sent home from the ER and don't have to stay. But if you are unprepared, then counts are low and you have to stay. We also keep a to-go hospital toy/activity bag for Elena. It's full of special things that she doesn't always get to play with, so it helps to break up the monotony. -Brianna
- Bring your own pillow from home. It makes SUCH a difference on those uncomfortable fold-out beds. -Brianna
- We found over time and after a lot of hospital stays that Elena actually did better with more normalcy in the hospital. So, it helped for us to pack pajamas for each night and (comfy) clothes she could wear during the day (rather than a hospital gown or nothing but a diaper/underwear as she often preferred. -Brianna
- If you're in ICS you have to get to the breakfast cart FIRST so you can get one of the few good big muffins, and not get stuck with the small blueberry cardboard kind. -Jill
- If you have other kids, I recently discovered that there's a lot for them to do here if they have to be here for a little while. Yesterday I called kids crew for the first time! They had someone up in ICS for me in about 10 minutes, he found my 3 year old in the ICS playroom and just hung out, played with him, raced him up & down the halls on the bike for about 30 minutes while I packed up my things, got my laundry out of the dryer and tidied up Jacob's room before I went home for the night (Dad took the night shift :) ) The "forever young" zone on the third floor is a lot of fun too and they will take siblings for up to about an hour at a time if they have enough volunteers. -Elizabeth
- If you get put on the 3rd floor you can go to the 4th floor they are "one & the same"-not really but you know what i mean, we were on the 3rd floor for a couple times before i figured out i could still go to the 4th floor to use stuff. -Amber
- Use the KIDS CREW as much as possible during an ICS stay. We called them nearly everyday to come and play with Erin, it's great new entertainment and they have millions of brand new toys for your kid to play with. -Jill
- Your kiddo' can eat in the caffatiera they will give them i think its a $6 allowance. So they can go (if they can leave the room/floor) and pick out there own stuff... AND they can order any food from the cafeteria. -Amber
- You can have volunteer come sit and play with your kid (that really helped me). -Amber
- The music therapist has magic powers to make a sick kid feel better. -Jill
- Use a white noise machine to drown out the hospital sounds while sleeping in ICS, you'll sleep through the beeping IV pumps and you'll sleep through the times the nurses come in. -Jill
- Tues. is Antipasto Salad Day! YUMMY!!! It is in the refrigerator with the prepared sandwiches. -Rylee
- We brought a foam mattress pad to sleep on in ICS, we put it over the green pull out couch/bed, it was soooo much more comfortable. -Jill
- The Extra Small hospital pajamas can ONLY be found in the D Pod drawers (at least that was the case last year). And, don't ask for pajamas or bedding or towels, just go out and get them yourself. Make yourself at home. -Jill
- You can use ANY of the hospital supplies in your supply cart in ICS. Open it up, pull out the stuff and let your kiddo enjoy playing doctor.-Jill
- There is food in a the cupboard above the microwave in the ICS laundry room, it gets occasionally stocked with expired stuff that still tastes good. -Jill
- The yogurts with frozen fruit in the cafeteria are the best! My husband says the sandwich shop by the cafeteria is the best. -Jill
- In the ICS in the drawers under the microwave there are toothbrushes and shampoos and stuff. -Amy
Tips for taking meds (for younger kids):
- Practice (when it's not time to take pills and you aren't stressing) having them swallow tic-tacs. It never worked if we tried to do it around medicine time. But it finally worked when I just made it a fun game we were going to play during the middle of the day. It also helped that she hated taking the syrup-y/crushed pill concoctions, so she was excited to learn an alternative. :) Sometimes you just have to give it time. -Brianna
- Try using the flavored drink syrups (like for italian soda and coffee) from the grocery store (Torani is one main brand) instead of the flavoring syrup from the pharmacy. They are less thick and taste better. -Brianna
- We practiced pill swallowing with mini m&ms then regular ones- never thought about tictacs! Great idea! -Chelsie
- Cami would NOT take her meds at first. She refused to swallow pills and she wouldn't open her mouth for the liquid meds. Mike (the child life specialist) gave us this recommendation and it really helped: When she was released from the hospital, we put a mask on her and took her to Toys-R-Us. We allowed her to pick a special doll house out and we kept it all boxed up. Then we made a chart at home and every time she took a medicine she got to put a sticker on her chart. When she got 5 stickers, she was allowed to play with her doll house for 1 hour, then it was put away. Mike explained that the toy would lose its luster if we just gave it to her. It WORKED and now we don't need the chart anymore -Cami is a pro at swallowing those pills, but I still use this system when Cami has to do hard things, I tell her we will get down your special doll house for an hour if you can be brave. It works every time. I will save that house forever. It will always be a special toy for her. -Chelsea
