All done!!

Yes, Victoria is all done with CHEMO!! On September 10th 2015 we gave her her last medicine at home and celebrated her end of treatment by throwing her a super hero pool party! Victoria loved it! She stayed in the pool the whole time and only came out to eat because she was forced too. All of her cousins and aunts and uncles surrounded her and made her day extra special. Special thanks to cousin Bina for sharing her floating tube with her the whole time!!! ❤️

On November 30th she had surgery to remove her portacath. This was both a joyous and scary day. It truly marked an end of something so harsh and brought on the worrisome of ‘what if it comes back?’ 

I know my Victoria is super strong and such a fighter! She has made it this far and she will continue to fight!

We need to continue taking it one day at a time! 

Double the Joy!

Finally had an ultrasound and guess what we found out..? TWINS!!! Yes you read it right… We are having twins.. My worrisome has doubled.. Lol .. I’m also super excited and thrilled and a bit shocked.. Twins .. I feel like it’s not real like it’s a dream but it’s real yay!! Twins!!!!
EDD is April 30 th 2015..

Back to V, we went in 10/31 for spinal tap , chemo and ivig but spinal tap and chemo was cancelled since anesthesiologist didn’t feel comfortable putting her to sleep since she has runny nose and slight cough.. ( V’s usual) So all V got was an ivig…

We went trick or treating in evening and all the kids loved it!! We only did one block since kids got tired really fast.. V was Princess Anna ( I made her costume) B was Queen Elsa ( bought her costume at disney world) and N was Batman ( he didn’t want to take it off so he was Batman the whole weekend)

Also, not sure if I mentioned that V is going to school and she is loving it!!!

Pregnancy and chemo? September

It’s scary to know what chemo does to the cancerous cells but even scarier to think what it can do to the healthier cells.. And I’m not even the one taking the meds just giving them.
Finding out that I’m pregnant has totally freaked me out.. Not only because I carry the trisomy 21 gene but because I’ve been giving v her meds and taking care of all that comes out of her.. And even though I do wash my hands and try to avoid touching the actual meds on occasion I have touched a pill and even forced some of the crushed liquid inside vs mouth..
Knowing that chemo is dangerous it is especially dangerous to a fetus especially in the first trimester.. Feeling like it’s too late to asses the damage I’ve done…I’m only a few weeks along and since finding out I have changed my ways of helping my kid I still worry about the before and the beginning.
I spoke to vs drs and a few nurses who strongly agree that I shouldn’t be giving v her meds anymore and to wear gloves and proper hand washing when taking care of v. It totally feels like im alienating her and treating her like she’s contagious or something. Proper hand washing after changing a diaper or even cleaning up vomit or wiping a runny nose isn’t good anymore , it’s dangerous.. Anyone out there dealing with the same thing?? My daughter is half way done with chemo but still has a year to go, I’m just worried I won’t be able to be in the same room as her …
I started reading webmd and noticed that after 12 weeks of pregnancy (2nd trimester) that the placenta acts like a barrier and only small amounts of chemo gets through to the baby. And this is on woman who have to undergo treatment not someone administering it. So I guess if I am safe about taking care of myself especially for the first 12 weeks by unfortunately having minimal contact with vs discharges then baby should be ok… Well In fantasy world I guess someone would be there doing all the dirty clean up and I would do all the good stuff like receiving lots of hugs and dry kisses… ( seriously , even her saliva can be dangerous?)

Shocking to have to deal with so much again.. Never ending worrisome for this mother…

In a perfect world right now I would be feeling lots of joy and happiness and not a care in the world.. But in my reality I’m worried and scared shitless. Trying to care for one kid has made it dangerous for the other ones.

Maintenance

So V has begun maintenance. Yay!! On January 24 she went in for her usual spinal tap and started daily and weekly chemo pills at home! It hasn’t been easy since v hates drinking meds and it is such a struggle to make sure she drinks it. A one sec process has turned into a 5 min battle with v. I even accidentally made her lose tooth fall off during one of our daily battles. Even though med time is hard v is getting back to her usual self and her hair is growing back !!!!! V and B are enjoying being homeschooled ( not by me but an actual teacher) she loves the songs and music she brings for her. She will start school in the fall. I’m kinda worried about that but that’s part of growing up and she does love learning so I have to deal with it! The little guy isn’t so little anymore ( well he still is short as we all are ) he is walking and running and trying to talk. He does this cute thing were he walks to you and closes his eyes like he is sad or something. Sooo cute!!! As soon as he sees grandpa ( my dad) he forgets about me!! Thanks to grandpa and grandma who have been watching them for me while I take v to drs and therapy sessions. B just turned 3 and my is she a handful hoping terrible 2’s go away soon! She is so independent and energetic and sometimes nice. Lol she hates sharing but wants everyone to share with her. Kids… They sure do grow up soo fast! 😒

I have been making doll clothes and hubby and I doll furniture. (thanks to Ana white’s plans ) The 18 inch dolls like american girl and our generation. It is soo much fun. My girls aren’t really into playing with them just yet however when I do sit to sew B gets on a chair next to me and watches. ( I make the beds and tables and clothes as gifts for nieces birthdays, I think they all have one already) I can’t wait till they start playing with bigger dolls. Right now B is into smaller dolls like little figurines and v does play with dolls but the 15 inch ones and she uses them as babies. We took out some barbies for b to play with now that she’s 3 ( for those who know me you know I love barbies and still have all mine from my childhood) but she still prefers her figurines. Even when I sit to play with her she grabs her figurines. I hope she starts playing barbies soon!!

Well back to v , we go in April 16 for another spinal tap and start another round of steroids ( I am sooo not looking forward to this part) but it is what it is and in Gods hands she is!

Have a great day!!!

Delayed Intensification … October

V started another phase of chemo… Delayed intensification… This one doesn’t require hospital stays however she’s back on Decadron and boy is she grumpy and irritable…

Last phase went ok, however we had a few scares since the hospital staff made a few mistakes.. Thankfully v is ok and the mistakes where caught quick enough…

October was just a bad month… it started with v getting chemo faster than she should have..( a 24 hour methotrexate treatment was given to her within 17 hours) the nurse put it through a different machine with the iv tubing thinner and I can only assume her calculations for dosing time was wrong.. thankfully it didn’t affect her and on the bright side we were able to come home sooner.

Then she was given a rescue drug while the bicarbonate was on (I don’t know the full medical reason for why this is a no no… But I do know that v had 2 separate lines with different iv liquids for a specific reason and only one was suppose to be turned on at a time.. ) Thankfully i caught it within minutes, as soon as the nurse walked out I took a look and noticed and immediately called a nurse in … (the nurse tried to assure me it was ok.. However every other nurse I told told me different..) Thankfully no time for the line to crystallize..

Then the next day v gets someone else’s iv fluids…. 2 hours later we notice.. The nurse comes back to switch with again someone else’s bag… Luckily I’m watching her like a hawk and notice and tell her and finally after the 3 rd bag v gets the correct fluids… Luckily nothing serious happened, her phosphate level increased by like 2 points but by the next morning they were back to normal..

Like seriously… I’m normally the annoying parent that is like uh.. What time is her next med.?.. Or what is that for..? And what does it do..? And blah.. To the point that some nurses would come in already telling me what they were going to give and what was going to be done and double check her id band ( which is something they should already do).. But I guess I let my guard down.. I put my trust in these nurses who have gotten to know us by name and likes and dislikes..whom I assumed would do their jobs right… But I guess shit happens…  Pretty upsetting… And scary.. For all you out there.. dont Let your guard down.. Keep asking.. Keep looking over their shoulders…. No question or comment is dumb… If something doesn’t feel right.. Say something… Even if you get a bitchy nurse who assures you shes doing it right, ask for another opinion for someone to double check..shit triple check..

For those of you who are like seriously how can u let this happen let me say this…i do stay all day and night with v. For the first mistake I asked the nurse why she was doing it that way and that they used a different machine the last 2 times and she told me that since v moves a lot it safer since the line is longer and since I’m not a nurse, I accepted her reasoning and let it go.. I assumed that everything was taken into account and that the med would be given correctly… For the second incident… Well I caught it in time, i know I wasn’t hovering over the the nurse making sure she was doing her job right, but I was watching, and as soon as she stepped out I checked the machine and noticed and immediately went for help. The last incident I can only assume that the nurses have the bags aligned by room numbers and the nurse mistakenly grabbed the other bag since the bag belonged to our neighbor. I’m glad I noticed the name on the second bag before she hooked her up and again messed up…I’m not making excuses or trying to cover up for anyone… Shit happens even to those that are careful, we just have to leave it in Gods hands and hope that nothing bad happens…

It has and will always be in Gods hands…

( please excuse the essay n writing.. If I revise it I will probably not post it.)

Back at hospital for chemo..

Sorry for no update just feeling too blah.. The hospital setting sucks.. The stories you hear are super depressing… At home i feel super busy that i cant catch up with whats going on with my other 2 babies.  My N is crawling!! I was able to see it.. My B is getting smarter and smarter… Too smart for her age… And my V Is enjoying her time with her brother and sister..

We are back at the hospital since Tuesday night…
V came for her second round of iv methotrexate and vincristine. We were close to heading back home and rescheduling since her creatinine level was higher than usual.. However after tones of iv liquids and many many soaked diapers later, her numbers dropped and it started today.

Over all she had a bad day… She was so annoyed.. So mad.. She kept throwing herself, not listening and hitting me… Poor baby… I had to rock her to sleep…  Who can get mad at her??? Who can discipline her?? Shes going through so much.. Unable to express with words what she feels.. The only way she knows is with crying.. Whining and throwing her body around…when she would hit me it made me want to cry.. All i could do was grab her hands put them down and say no while looking into her eyes… Those blue eyes were trying to tell me something…. I would do anything and everything to take her place… I dont want my baby to feel this pain…

In between her madness she did have good times… She played with cousin B, aunt S, blew bubbles and colored with aunt Nam (had to put it Nam) She played 2 x in the play room and grandma joined us.. she rocked out for Telemundo  ( she should be on real quick on friday or sat at 5 am or 6 am).

We have a few more days here.. Hopefully we get to go home on sunday…. I miss my babies… Didnt get to see them in person today however,  thanks to facetime i saw and heard them.. My B said she loves me very much.. And my N was all smiles…

Please send a prayer for my V, all the kids here and there families…

Thank you!!

The Start of Interim Maintenance

Yesterday we went to the clinic and V meets the minimum for her to start the next phase….INTERIM MAINTENANCE..  😥

Hospital here we come….

I’m all over the place.. i cant think straight nor write what i want to say .. i’m forgetting everything.. I’m bummed.. frustrated.. However, feels good to know my baby is one day closer to being Cancer free..

We get here and V is all excited.. she was laughing and yelling and running around and even wanted to sit on her bed.. (Good to know her spirit is still the same).. However after the vitals and the numbing cream she began to want to leave… I kept her busy with crayons and a coloring book.. or rather she kept me busy.. ( she kept throwing them on the floor laughing her ass off each time i had to get up to get them,,. my little clown) After the numbing cream sets in the nurses come back to insert the needle on her portacath … Poor V… The needle is in the port and shes hooked up to the liquids…and my V starts telling the nurse “buh bye” .. trying to get off the bed and telling me “go” and “shoes”… Breaks my heart… We are looking at a 4 day stay with lots of strong Chemo.. totally sucks…It wouldn’t be so bad if i didn’t have to leave my B, N and my Hubby…

Its after midnight and she is still up,,,(no SMH”s please)  I purposely keep her up when she has to go under so late to avoid her from suffering .

One thing i hate is that no matter how many times you ask they still manage to schedule her LP (Lumbar Puncture or Spinal tap) late.  And even though you ask again for a different time they tell you that’s all that’s available and if a slot opens sooner they will take her in.. Its like seriously …? You would think that since shes only 4 and doesn’t fully understand whats going on that they would schedule her bright and early to avoid her from crying and wanting to eat and drink.. But no.. So no breakfast.. no lunch not even a sip of water for my V tomorrow until after her LP which is scheduled at 1 pm.

She just looked at the pictures stored in my phone and she found the one i took of her today.. in this pic she is walking in the hospital with daddy and she said “daddy” and i said “yea daddy at home” and she said  ” Daddy.. yeah.. kaka .. Coco”  ( Thats what she calls B and N)  Awww.. my sweetie understands . (Deep breathe.. fighting to keep the tears back… )

I am at awe on how brave and strong my 4 year old is.. she definitely is an Angel sent from above..  We are truly blessed.

Guardian Angel watch over all my babies.. in heaven, at home and in the hospital..