hi. today is not as bad as yesterday. i actually feel like playing and walking around…the problem is that i can’t. my body is not functioning the way it used to and i don’t understand why i can’t walk and play like i used to do. it’s frustrating to me. i spent most of the day in mommy’s arms. i tried to play with grandpa some since he’s leaving tomorrow.

tomorrow is also another big day. i have to go back to children’s hospital for another chemo spine treatment. and they hafta draw more bone marrow to test it and see if i’m going to be in the low-risk group. that means there has to be only 5% or less cancer, meaning i’m in remission and i would get much smaller doses of chemo in my phase 2 treatment. if there is more than 5%, than i go back to the high-risk group and may have twice as much chemo for phase 2. we won’t know the results until probably friday and will post as soon as we find out. please please pray about my results, that jesus will be with me throughout my treatments and that i will healed! please also pray that i don’t get as sick this time from the chemo…i’m just starting to feel a bit better.

i’m trying to be good and happy, but it’s so hard. i’m so tired of being sick, tired of not being able to play and run and do all the stuff i was used to doing before i went to the hospital.

hello there, sorry for the late late update…i had a really long night sunday night and a doctor’s appointment this morning. they had to draw some blood so they can test it. they found out my blood count and hemoglobin levels are dropping and i’m probably going to need a blood transfusion before my next treatment on wednesday–but at least i have 4 units of blood waiting for me. and right now that is plenty since it can only be held 30 days. i may need more later though, so please stay healthy so you can donate if you want to next time we need it

i’ve been having a really hard time. i don’t feel good, and even though i’m too young to know what a “mood” is, i can hear mommy and daddy saying that mine are swinging, but it doesn’t sound very good. and i know that mommy is tired all the time ’cause i guess i take a lot of energy out of her and everyone else that is trying to help. i’ve been hungry all the time too, so they try to keep exactly what sounds good to me on hand, but i’ve been kinda picky ’cause my tummy hasn’t felt very good.

so wednesday is the big day for me trying to reach the 5% remission. that’s gonna be how the doctors tell what kind of treatement i get next and how much chemo i’ll receive. less than 5% which will classify me as low risk treatment (which can change with time if i did not continue to respond the additional chemo treatments). MUCH PRAYER ON THIS MATTER IS REQUESTED–i know you’re praying out there and we really appreciate it!

well, i gotta go. i’m feeling hungry again!

hi! boy have i got a lot to tell you…hmm, where should i start? how about friday night? after 3 days of feeling awful sick and tired i finally started to perk up a little bit and wanted to look at some books and play–just a little. mommy and daddy and grandma and papa (grandpa) were all so relieved about that. i could tell they were really worried because my first days home were miserable days for me, which i think made it really hard on everyone else

but guess what else happened on friday? we got back my bone marrow results…and my blood marrow went from being 90% cancer to only 20% cancer! and, they found something else in my dna that makes it possible for me to be put in a low risk group in my program…the final factor is my next blood marrow test this coming wednesday (we’ll have those results a few days following)–my cancer needs to be at or below 5% (i think its called remission) or i’ll be put into the high risk group. its the difference between 8 weeks of chemo or 2 weeks of chemo (and more PEG shots) for phase 2, so we’re praying lots for my results to be 5% or less–could you pray for that too?

sabbath was an okay day. i still felt yucky, but my daddy’s family came to visit…so it was distracting. we tried to rest and some of us were able to get a nap in for a little while, but then i started feeling awful again and i think i woke everyone up. i’ve noticed that it takes a lot of people to help me. mommy’s gotta hold me a lot, and everyone else has to help her with things she can’t do ’cause she’s holding me.

today has been my best day home so far. i’ve been hungry all day–and i’ve eaten a lot too! soup, crackers, smoothies, juice, water and lots more! i’m still kinda tired and i don’t have lots of energy. i can’t wait until i start to feel better, i’ve got lots of new toys and stuffed animals to enjoy now i still prefer to sit with mommy most and am waiting to feel better before having adult visitors, still can’t have my kid friends over yet. i have a blood test tomoorow to find out my blood cell counts so i gota go to bed and get some rest before that..

nighty nite!

good morning boy am i tired! i don’t feel good at all, but i am happy to be home. my kitties bali and foxy were happy to see me. they decided to hang around downstairs with us a lot last night.

mommy says the pharmacy did not do a good job and messed up making sure i got the right medicines. i know she’s not happy about that, and i guess i shouldn’t be happy about getting one less medicine–but couldn’t they have chosen a better one to miss? they forgot to give mommy my medicine that protects my tummy from all the other medicines…i guess they’re gonna have to figure that out today. please pray for my mommy, there are so many medicines and it’s very confusing stuff to mix and make sure i’m getting the right ones at the right times.

you know what was neat though? yesterday i got to go outside for the first time in two weeks! so i saw lots of trees, heard an airplane, looked at the grass, and just really enjoyed being out in the sunlight.

hopefully i’ll get a chance to stop and tell you more later! this is day #10 and we still have 18 more to go. thanks for the prayers and well wishes…keep them coming!

yesterday was my hardest day. i feel a lot sicker–i didn’t want to eat, didn’t want to go to anyone–i was so miserable i didn’t know what to do or what i wanted. that’s because i had 3 different chemo’s, one in my spinal, one directly into my heart (isn’t that crazy?!) and one mommy had to squirt down my throat. the doctor told mommy that it might take about a week to really affect me. so it might drop my blood count, and i might need a blood transfusion next week. this is a good time to tell those of you who have already donated thank you! those who are willing, mommy or daddy will have someone contact you and let you know when we need it–since donations can only be held for 30 days.

but guess what?!!! i’m going home today!!! i guess the doctors say that my treatment has been going so well that they will let us leave. i still have to come back next wednesday for another spinal injection of chemo, but not to stay…

and you know what? the spinal injection i got yesterday HURTS! it hurts when anything touches it or bumps it don’t tell anyone, but it’s made me cry some…

but i’m gonna focus on the best part which is–we’re going home!

hooray!

good morning! wow, i slept really well last night! since they got my port-a-cath fixed, they’ve been able to draw my blood from it. i even slept through when they did it at 2am this morning (mommy told me so).

today i have a spinal injection of another chemo drug. i’m not happy ’cause i’m not allowed to have any fluids or food until they do it–and they’re not gonna do it until 11am today! i’m so hungry!

the good news is that yesterday the doctors said that my dna test results were favorable–putting me in the low-risk category and my phase 2 of treatment will probably be smaller doses. i think that’s what the grownups call a “miracle” all i know is that no matter how much they poke and prod me and draw my blood, i want to be a happy girl and it makes me so happy to have my mommy and daddy and grandma and grandpa with me so much.

please pray for my spinal procedure at 11am today!

i have a bone marrow analysis tomorrow. and i’m getting another chemo drug tomorrow in my spine. i thinks this is the last new drug in this 28-day cycle. i rested a lot today and spent it with grandma and nanny Ellen. mommy and daddy had to go and do some other stuff at home.

when mommy and daddy came back last night, i was in a really good mood, and wanted to play with them…we had lots of fun. i’m trying a new game with daddy, he’ll be rubbing my back or something and i’ll take his hand and push it back and tell hi “no daddy”. i had lots of fun doing that last night and he could tell it was a game for me so he thought it was funny too and he called me a prankster *giggle*

thank you for continuing to pray for me and my family. Jesus is definitely caring for us and using some really wonderful people to help us out. thanks for all the yummy food and smiles that you bring!

more tomorrow!

good morning! i have to get a scary shot today…its called PEG and they divide it in 2, and stick me in both of my legs! i don’t think i’m gonna like that at all! at least i’ll have my mommy, daddy, grandma and grandpa to comfort me afterwards.

everyone’s been praying so much–thank you! mommy and daddy keep saying they really need prayers today for this shot.

also, they’re definitely gonna have to fix my port-a-cath, and i know that’s not gonna be any fun.

thanks again for all your gifts, prayers and food for my family, they’re so busy taking care of me–it’s good others can help take care of them!

i’ll write more later!

*blowing kisses*

okay, they’re gonna fix my port a cath at 2:30pm, and while i’m in recovery (’cause it’s a surgery and they’re gonna make me take a nap) and still mostly sleeping, i will get the PEG shots–remember to PRAY, please

mommy and daddy are going to meet the doctor this afternoon. he’s gonna tell them what the next 90 days (that’s a long time!) will probably be like with treatments. i get another spinal on wednesday day #8 another on day #15 and it will be new medicine. mommy and daddy should know how the PEG worked this friday. and i’m gonna have to have some more PEG shots sometime soon.

they didn’t get me in to surgery until 4pm and i was soo hungry! but they wouldn’t let me eat before. i guess it went okay…when i woke up i called for my mommy and she came to me right away they gave me the PEG shots while i was still pretty sleepy and i don’t really remember that part at all and i’m so glad. what i do remember is that they had put an IV into my foot and i didn’t like that AT ALL. i kept telling mommy to take it off, but she wouldn’t and said i had to leave it in until the doctor took it off. i knew it just had to come off, so as soon as we got back to my room, i told daddy, grandma and grandpa hoping that one of them would take me seriously! finally, someone came and took it out and then i was happier.

9pm – it’s time for me to go to sleep, but i wanted to tell you what mom and daddy found out some more info. there are 3 categories of risk and though i have most of the stuff that puts me in the low-risk, i don’t have all of it, so i’m in the medium risk category. depending on day #8 and day #15 results and a random process my treatments may double…if i don’t show signs of remission at day #29 (after the complete 28-day cycle, then i get put into the high risk category. i know it all sounds kind of scary, but right now i’m doing really well. please keep praying!

and you know what else? i’ve been having so much fun with this car they brought to my room for me to play with! i like to get in and drive it around the room. everyone says i’m a great driver

okay, mommy says i’ve gotta get some sleep now…i think that’s a good idea. but only after we all sing some of my favorite songs, like happy home, and if you’re happy and you know it and…*baby snore*

hi! today was sabbath, and we tried to have a day of rest…as far as doctors and nurses, it was nice because they didn’t have to do anything major to me abigail’s mom brought lunch for my mommy and daddy and grandma jones, so that was really nice! i now have a lot of stuffed animals too it’s nice to have such a variety and i know the names of all the animals ’cause remember, i love animals!

i did not have a lot of energy today, but i still managed to drive the car (on loan from the playroom, but i’m gonna have to get me one of my own someday–i’m a great driver!), and i’ve learned how to walk around and bring my iv pole along with me–all by myself!

i did have some trouble with my tummy today, but it finally passed after i ate some (avo)”cado” and i felt LOTS better.

and at the end of my day, my daddy left for a while, and when he came back, he had grandpa jones with him! i was so happy to see him! he sat right down and read me a book!

and now it’s time to go to sleep…i’ll write more tomorrow!

Thank You Meredith and Matt Jackson for fulfilling the washable slippers need!

last night was a really hard night. the nurse came in to do an IV, tried my arm–but the IV got bent! then they tried my wrist…finally after a half hour they said that they were done trying and would have to bring in an anesthesiologist. but then a different nurse came in and said she wanted to try–this time we prayed before trying and we were able to get some of my blood!

that’s just the beginning of my day…hopefully it is not as busy as yesterday!

my blood counts are up, so that’s a good thing!

mommy and daddy faxed my blood donation paperwork again today, so hopefully you will be able to help me out soon… and they will know who i am when you donate!

the PEG shot is going to happen on monday so i would be so very thankful for even more prayers on monday. this shot can have serious neurological effects, so im not looking forward to it at all!

the doctor said that based upon how things are going now and if the PEG results are good then i might be able to go home after the first two weeks! yippeeeeeee!