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…
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..
Finally after a week of no chemo, V was able to sleep the whole night through in her own bed. We went yesterday to check her counts to start the next phase (interim maintenance). She didn’t meet the minimum (anc of 750 and platelets of 75k. her anc was 220 -platelets was over 400k) and her hgb was low. At least she gets more time off for her little body to recover. We go back Monday to re-check and then we are looking at being in the hospital every other week.
Still dont know much detail about what to expect, but it doesnt look nice. Even thinking about having to be away at a hospital for a few days sucks.. But what can we do.. Im going to miss my other babies.. but at least daddy will be able to bring them by in the evenings so V and I can see them.
Its so hard to discipline her… makes me feel guilty each time i have to yell and stop her in her tracks… a couple months ago i was sad she wasnt being herself and that she was just sitting on the couch wanting us to carry her from one room to the other .. and she finally is able to play and run and i have to stop her…
Any advice on how to discipline a child with cancer???
One day at a time.
with everything that has come our way it makes it easy to take it just like that….