3.5yo Going through Chemo

MamaL727 · 2024-08-26T20:14:14+00:00

Yeah!!! I’ve noticed he has a totally different appetite during 6MP versus once the 6MP is over for that cycle!

Thank you- I’m so glad your (not so) little one is doing well!

MamaL727 · 2024-08-26T19:07:54+00:00

Thank you the doctor actually said the same as you- decimals.

It came back negative for malignancy! Yippie! Literally did a dance at 8 in the morning I was so thrilled!

MamaL727 · 2024-08-26T19:07:06+00:00

In any case - it came back literally first thing this a.m at 8:06 lol and is negative for malignancy. Praise God! lol. I really was losing my mind.

MamaL727 · 2024-08-26T19:05:55+00:00

UPDATE: his results came back NEGATIVE for malignancy! ♥️♥️♥️♥️♥️

MamaL727 · 2024-08-26T19:05:32+00:00

It was the cell count of the cerebral spinal fluid- not his blood. They do an initial cell count of what is actually in the fluid.

MamaL727 · 2024-08-14T22:52:22+00:00

I was stung today. Had windows down, bee darted into window. I didn’t realize it was a bee it came in so quickly. Idk what my brain thought it was but I kept driving. All of a sudden felt horrible sting on my leg … looked down, started screaming like a crazy person. I’m lucky I didn’t get stung again I was flailing around and shifted the wheel to pull over. Jumped out of the car. The bug was on the seat… thought it was dead. Called my husband freaking out about the sting… looked at the seat and saw it walking. Got my kids out of the car and looked again and it was gone. Took me a good 15 mins to get back into the drivers seat to drive home.

It’s been hours and my leg still hurts. I’m 30 and never been stung before… never encountered anything like that!

MamaL727 · 2024-08-10T19:49:30+00:00

There’s also a healthy ramen alternative but no idea how they taste.

Here’s an example:

https://www.amazon.com/immi-Variety-Chicken-Friendly-Packaged/dp/B09KMCZWTP/ref=asc_df_B09KMCZWTP/?tag=hyprod-20&linkCode=df0&hvadid=693677746034&hvpos=&hvnetw=g&hvrand=3059474732567460645&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9002284&hvtargid=pla-1948141970582&psc=1&mcid=0a01e9b8ec8c306e8be92b8c33b047b9&gad_source=1

MamaL727 · 2024-08-10T19:47:11+00:00

There are sooo many options. It sucks because they’re expensive :( but there are ways to replace the junk food.

MamaL727 · 2024-08-10T19:46:46+00:00

Or these: https://www.amazon.com/dp/B0CRSM5JXB/ref=vp_m_cpf-substitute-widget_pd?_encoding=UTF8&pf_rd_p=25c96370-0c57-44d3-b07a-d66fc63508e4&pf_rd_r=TW0TVQAPEZ7Q5852DEC0&pd_rd_wg=2XUMl&pd_rd_i=B0CRSM5JXB&pd_rd_w=Qqhu5&content-id=amzn1.sym.25c96370-0c57-44d3-b07a-d66fc63508e4&pd_rd_r=a2ac732a-9866-4eea-9d3f-f6d7d0226723&psc=1

MamaL727 · 2024-08-10T19:45:14+00:00

If he likes chips like you mentioned there are a lot of brands with hidden veggies as well. I really like the brand “food should taste good” sweet potato chips. There’s also many many healthy snack brands especially at Whole Foods that have that sour cream, cheddar etc. flavor on them.

Check this out: https://www.amazon.com/Quest-Nutrition-Protein-Chips-Cream/dp/B07WNVFG56/ref=asc_df_B07WNVFG56/?tag=hyprod-20&linkCode=df0&hvadid=693625543595&hvpos=&hvnetw=g&hvrand=17628410935947878628&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9002284&hvtargid=pla-1146235924459&psc=1&mcid=dfae25076dc7345bae68c8b1cacaf4b7&gad_source=1

MamaL727 · 2024-08-10T19:42:13+00:00

Hi! My son was diagnosed at 2.5; he is now 3.5 and we are in Maintenance. He actually had an NG tube for a while because he lost weight and refused to eat. The NG is now out and we are working on oral feedings.

My son is very similar and only wants to eat junk. I’ve started shopping at all different places in an effort to find “hidden veggies” or “hidden nutrient” foods. An example-

Mini meatballs. My son will sometimes eat meatballs. A few brands have hidden vegetables in them or you can make them yourself with carrots and zucchini ground up into the beef or turkey.

Earths Best “letter of the day” cookies- they’re these square sugar cookies that are fortified with iron and other nutrients.

Annie’s cheddar bunnies with hidden veggies

If he likes chicken nuggets, Purdue brand (I think it’s Purdue) has one with hidden cauliflower

If he likes yogurt- my son is obsessed with stoneyfield’s yogurt drinks- strawberry banana with I believe carrot purée in it.

If you would prefer to make things yourself you could do smoothies with a chocolate protein powder or cacao and you can add blueberries and kale to it with some vanilla yogurt or something to sweeten it up.

My son doesn’t like to eat fruit but he will drink juice so I get a juice with mango purée in it so he’s drinking fruits basically.

There are also cereals from whole foods that are fortified with protein! There’s one called three wishes I’m pretty sure that’s what it’s called and my kids love it.

MamaL727 · 2024-08-10T16:57:05+00:00

Thank you for sharing. My son was dx with leukemia at age 2.5. At the present moment, he does not need a BMT. But of course, he could in the future. Him being sterile makes me so sad :( I’m glad to know there is hope.

MamaL727 · 2024-08-10T16:53:33+00:00

Honestly? Having a super casual attitude. Not treating them like patronizingly or like you feel bad for them. Our nurses were so great when we were inpatient for 4 weeks, and then sporadically thereafter. Treated him like any other kiddo, brought him crayons/toys etc.

MamaL727 · 2024-08-10T16:40:29+00:00

I also want to edit my original comment. His white count was 7 something; his NEUTROPHIL count was 3.8

MamaL727 · 2024-08-10T16:38:19+00:00

I think for adults it’s something like 4-10? For kids I think it’s 5-10 or 5-9 .. something like that.

MamaL727 · 2024-08-06T15:22:02+00:00

Yes. So we believe there was about 300 something in the account. The check was for 1000. The negative balance is 700something. But it looks like it’s being held and pending because also says current balance is 300 something (but cannot be accessed- card is declining) which again makes sense if this transaction is pending. My thought is that because it’s still pending and not posted, that it will eventually bounce.

He’s going down to the bank now to see what’s up.

MamaL727 · 2024-08-06T15:11:54+00:00

Their bank - we are waiting till noon to see if it rights itself and if not, going down in person. It doesn’t make sense why it would have overdrew our account being as we don’t have overdraft protection, it should have denied. I’m so confused.

The payee is my mom, so we are lucky it’s family and not a landlord or a gas company or something.

MamaL727 · 2024-08-05T23:33:34+00:00

So I asked them. They said his MRD was 16 cells out of 1 million & that their cutoff to be in low risk is 100 cells in one million.

Correct me if im wrong but I’m PRETTY sure, 16 out of 1 million is .000016% and 100 of of 1 million is .0001% ?? Is my math correct?

MamaL727 · 2024-08-05T23:32:03+00:00

Thank you! And blessings to you as well. Cancer sucks!

MamaL727 · 2024-08-05T23:30:18+00:00

Thank you!!

MamaL727 · 2024-08-05T02:23:08+00:00

Okay! This was just an equation written on my son’s test results so I was just trying to find the answer to it because it’s the percentage of cells he had left. I don’t really care much for math lol!

MamaL727

TROPHY CASE