Sunday we stuck around here mostly so we could get a good amount of feedings in for Elan as well as a good nap for both boys. Elan had started looking skinnier Thurs thru Sat so we knew we had to make it a full on priority. He did well and no throwing up! Monday's appointment he hadn't lost any weight so doing great. Most kids lose a bit during radiation so good to keep him on track.
Erik also talked to Dr. Guo (the TCM Doctor) on the phone about the teas etc and was given some advise as well as cut the tea down to 1 cup a day since 3 was WAY too much. I think that is partially why he lost a bit of weight as no calories in the fluid we blend his food with. Now I will use the Hemp milk again as high in calories. We are sticking to keeping away from dairy from cows again - he had another flare up of eczema
So today (Monday) we loaded the boys up to get to the clinic by 9 AM and we had a call at 8:55 - beam down! Oh NO - expected time up was 4 hrs... this means no food or drink as 6 hrs for drinks and 8 for food before analgesia. This is day 13 I think and the first time we ran into this. So we drove Finn to camp and hung out a few minutes then drove to drop our bikes off at the local bike shop for a much needed tune up (it had been 8 years). We wasted some time there distracting Elan as much as possible. We also broke down and bought a basket for my bike so we can pack our lunch, diapers etc since we had a hard time bringing all our gear with us necessary for 2 kids away from home more than one hr with one being tube fed. Basically the bike shop received a great reward for the beam being down and we had time to waste. The woman at the counter was originally from Charlotte and lived in Dilworth. She knew our old neighborhood of Plaza Midwood and ate at Lulu's the last time she was in town (a few blocks from our Club Rd house). She is currently in school for speech pathology and so I chatted with her regarding Elan and if she thinks crazy to be doing speech for a 21 month old. Nice to get another perspective.
We finally did get him in around 11:45 so not as bad as it could have been. Once there we ran into the 26 year old Jeremy who also is getting treatment for a brain tumor. He had with him this time his roommate who was a kind guy. Jeremy and his two friends from last week we had over for dinner. We had a nice time with them! The way we met them was the non-profit who we rent our house from had a "get to know each other" dinner we were all invited to. I was actually reluctant to go but it was so therapeutic to meet other patients and supportive friends. Well Jeremy is done on Thursday so we are going out for lunch on Wed to celebrate! Nice he wanted to get together with us.
We also met a new couple who has a 2 1/2 year old daughter on her 4th day of treatment (Elan is at 13th day now). They drive back and forth as they are only 45 minutes away but they are so kind as well. He is a school teacher and she owns her own business. I mentioned that I am a rep with Pearson and guess what - his dad is in Higher ed too! Crazy!!! I will get his father's name but at one time he worked for McGraw-Hill too in Michigan.
After that we picked up Finn and then headed to Thai for lunch... been wanting to eat at one here in town with raves and both of us were starving so went since they had a lunch deal. We ran into the waiter we had with my grandparents a few days before at the Runcible Spoon - he was too cool for school if you know what I mean when we had him and this time kind of the same but asked what the occasion was for my Grandparents visit and Erik gave him the bomb... it is odd but kind of enjoyed watching this guy squirm a bit. He was still very vegan/emo about it all though. When we were leaving he got up as well as a girl with him and gave their regards. I guess I shouldn't judge :)
We then headed home for a quick nap and then headed to the "B line for a walk and Finn on his bike. Boy is Finn proud to ride his bike and really good at it! He rode at least 1 1/2 miles and went ahead of us most of the time. we then stopped at Bloomingfoods - the local coop "granola" grocery - and bought Elan's yogurt made out of goat milk. Ever since we stopped cows milk (for the second time) his eczema has cleared up again - go figure. We added everything back after Dr. Guo said too... basically I was so overwhelmed I kind of gave up his diet for a week esp after finding out how his cancer grew back so aggressively. But I guess I need to trust Dr. Fodel since she said to stay away from it and gluten with him and his eczema is worth staying away esp since so many options and we feed tube him anyway! Now much happier kid and not scratching!
I have decided after all of this that I am going to write a feeding tube cookbook for cancer with all of my free time - HA! (ok long term goals now!). I will guilt one of my nutrition professors (Hint, hint) with a PhD to add a forward or something so it so we have some credit since you know, unless they are involved some unnamed folks won't read :0. We just feel so sad we were given a 1970's black and white photo copy of fats, carbs and proteins type of deal on how to make your own kid's food or the other option of 100% chemicals in Pediasure for his entire dietary needs. I was told by the dietitian from the hospital as well as the one HERE that she doesn't recommend to anyone to make their kid's food. I asked the woman here why and she said because of educating the parents on hygiene and how to make the food etc is too much for them. I am SHOCKED that no one educates parents on proper nutrition and how to clean a cutting board - shouldn't that be 101 anyway in life??? I am just horrified it isn't at least presented as an option - hence my super awesome, cool, rad, full color, Pearson sponsored :) cookbook.
When we were in the hospital in Charlotte they said Pediasure for Elan once he had his tube and I asked if there was a whole food option or at least one with less chemicals and they said yes - you just have to ask for it. Well we got a full month of the "whole food" Complete brand option at our doorstep the day we came home from the hospital. I gave away to a non-profit as I was told by insurance it was free for us and not to worry about it when I called to cancel it (later billed $600! but hospice took care of helping us get that resolved as we didn't request it etc.) FIRST ingredient for my cancer child was High Fructose Corn Syrup - well I am not a MD etc but I do know that cancer thrives on sugar (even my micro profs were shocked!) so the first day out of the hospital he went 100% food what we made. I am a crazy mother now with a diet once again of kale, beets, olive oil or flax oil, veggies and berries with quinoa or brown rice, eggs, poultry, fish, avocados in every blending, sweet potatoes etc. basically what all of us SHOULD be eating. He is the walking best fed kid while poor Finn is literally getting a Lunchable tomorrow for camp as a reward (OK I put a cut up apple and grapes in his bag too).
In the hospital in Charlotte I had to be super proactive about wanting real food for my kiddo to be given the caloric needs for him in this situation. I was a bit crazy I guess, because they said they only have had about 3 parents request it. I mean if the kiddos were not on a feeding tube would they be telling parents to feed their kids a diet of canned foods only? There logic was proper hygiene of cutting boards and knives was a bit ridiculous. They were totally on board with us and said they could tell we "had our acts together" but shouldn't every kid get decent nutrition? I mean really, does the fact the kid has cancer change the need for proper food vs a bunch of chemicals???? I now have my new purpose in life (ok a bit dramatic but a new goal of mine - a cookbook or "blendbook"). I only think the issue is that parents are perceived as idiots dealing with a situation. Now I do understand that parents get overwhelmed but sad that they (meaning hospitals and healthcare) don't give as an option right away and insurance doesn't cover a good blender but will for chemical food. WOW! All you need is a great blender and walla - food for the tube made of real food, not chemicals. Now wouldn't it be great if insurance paid for a good blender for say 1 time and then be done with it vs $600 a MONTH????? I am now helping the insurance companies! Every tube kid should get a VitaMix (the best blender by far by the way regardless if for mix drinks or mixed tube feedings (or both a the Miller house on the weekends now a days :)).
you go girl! write that book!
ReplyDelete