Updates on Ella
January 30, 2008 - Erin took a call from Dr. Stapleton today: The conversation went as follows: She just blurted out: "It's STABLE" IT IS NOT GROWING!!!!! Keep the prayers for Ella coming everyone because something is definitely working.
January 2, 2008: Start second round of this chemo but the doctor upped the amount of each drug she is getting because she responded so well to the other round. We are then scheduled for another MRI at the end of January. My stomach is in knots!! This will tell us if it is working if not.....the next step will be?????
December 12-31: Go to doctors appoints for her blood work to know when she is hitting her low and to see if she needs anymore medical help. We go back and her counts were SKYROCKETING!!!!! Her immune system was three times that of a healthy person. Me being me thought again that the chemo isn't working if it didn't kill off her good but... The doctor informed us that her stem cells did exactly what they were supposed to do (maybe better than they have ever seen) and started reproducing quickly.
December 12: Ella goes to St. Pete clinic for her stem cells to be placed back in her. They do this b/c Chemo wipes out good and bad. Once you put her own stem cells back in her (stem cells are the beginning of everything that is in your body) they should go and produce anything that has been affected by chemo which included producing white blood cells, hemoglobbin, platlets etc... basically your immune system. If she didn't get her own stem cells to help her recover, it probably would have taken 6-8 weeks for her own body to recover
December 4-11: Ella is doing GREAT!!! I even called the doctor to see if they even gave us chemo drugs. You would have never known she was on chemo. She ate, drank, played, giggled and slept normally!!!
December 3: Start first round of New chemo which is going to hit her just as hard if not harder than that of the last five months or so of chemo. We get the scripts from the Doctor, get them filled and go home to administer it!!!
Nov. 30: Dr. Stapleton came in and said they were going to try this New chemo that we are able to administer at home. This isn't a normal protocol treatment but a more personalized chemo for Ella that research has shown works on her cancer and the type of chromosome abnormality that makes up her cancer. Ella now receives: CCNU, Procarbozine, and Vincristine.
November 27-30: Ella had surgery to get a line put in her neck to harvest stem cells and a feeding tube put in just in case. Since she wasn't eating during her last rounds of chemo. Ella had the stem cell line taken right out when they collected enough stem cells to get her through 5 rounds of this chemo.
Sept. 24, 2007
Back home!!! She will start round 4 of chemo probably late next week. We want to make sure her counts and immune system are back up and as healthy as possible before they do it all over again. They will do an MRI before the next round to check the status of the tumor! So from the looks of it we will be back at the hospital on or around Oct. 4 or 5 and will be there for 4 days.
***She only has 2 more rounds of induction Chemo which is very harsh and aggressive. They try to blast away the tumor. After induction we go onto the maintaince part which means that they want to keep it they way it is and continue with trying to kill it. The drs. told us to take it day by day b/c after a year of Chemo they and we are not sure what the next step is. It is a wait and see kinda thing and all depends on what is going on and that can't be predicted! We could keep doing chemo until she is old enough to have radiation (age 3) or do radiation??? just not sure???????
Sept 20-24, 2007
Ella got two more blood transfussions and two more platelet transfussions. This may sound alarming but it is common b/c as I said before Chemo kills all, good and bad. This brings her Blood transfussions to: 5 and Platelet transfussions to 4.
Sept 20, 2007
In a matter of 2 hours Ella spiked a fever and we had to take her to the hospital. This is common in chemo patients. It is an automatic 3-4 day stay b/c they do a lot of tests to make sure it is not an infection. Once they come back negative (takes 3 days for the cultures to grow) and her fever is gone then we are ok and her White Blood Cell count has to be coming up!!! This is called (and don't mind my spelling trying to sound it out) Neutropenic fever which bascially means that her Immune system is completely wipped out and the body just responds with a fever as a way of saying hey I can't fight anything off and just in case it does have to fight things off a fever comes. It sounds complicated but after a while it becomes routine.
Sept 19, 2007
Platelet (spelling) transfussion at Tampa clinic. Second one of those.
Sept 18, 2007
Gramma Keta flies back to J-town
Sept 13, 2007
Discharge day but not before waiting 10 hours for her blood to arrive for her transfussion. This is her 3rd transfussion since June 07. Transfussions ends at 12:30AM yes AM and we went home right after.
Sept 11, 2007
Gramma Keta flew to Florida. Saw Ella at the hospital and went back to our apartment to prepare for another homecoming
Sept. 10, 2007
Ella started Round 3 of chemo. She did awesome during this round compared to the last. She ate throughout the whole treatment and threw up very little, mind you this is compared to last time. Her appetite of course isn't what it should be but she saw a nutrionist and put her on a more calorie formula! I try my best to plump her up when she eats. She has found lollipops and LOVES them.
September 6, 2007.
Ella has been in the Hospital since Monday Aug 27th. She had an infection in her Brovake. The Dr's got everything under control. She will start her 3rd Chemo treatment This Monday. She is gettting her wait up again and feeling alot better now. But she will soon be back down again becasue of the Chemo. Everything is going as good as it can get.
The Dr. gave us an updated long-term diagnoses. They gave her a 30% chance of living to 5. They said if she lives to 10 it would be a miracle. But we are staying strong, and positive. Ella is a real fighter. She has made leeps and bounds from what she was weeks ago. She is amazing. Please keep us in your thoughts and prayers.
July 28, 2007
| WELL...........................................yeah her second chemo treatment has been delayed slightly. One more bump in our brick road! She got an MRI yesterday. There was good and iffy news (don't want to say bad). The IFFY: Ella will go through ANOTHER surgery to put a shunt in her head. She has to much liquid and water in her head b/c the tumor in her spine may be blocking that. There is an advanced name: HYDRO something can't spelling it. This will relieve a lot of pressure that is on her brain. The Drs. said that this isn't as serious with babies b/c their heads are better able to deal with extra fluid b/c they can expand easier. The neurosurgeons said that this is the operation they do the most of and that it will be with her for LIFE! It will take the fluid from the brain and drain it into the stomach. A little white tube will be place in her head and go down to her stomach in the fatty tissues. She also had to get a blood transfusion with is fairly common in chemo patients. Chemo wipes out everything including hemoglobban. It only took 4 hours yesterday and they discharged us at midnight. We go back to the hospital for her surgery and start chemo session 2 on Tuesday.
|
Ella is doing GREAT! She starts up her second round of Chemo therapy on July 27, 2007. She will undergo an MRI to see how well she is responding to the Chemo. Doctors have informed us that this is a tumor that won't just melt away. It will take some time. We will be at the hospital for 4/5 days for Chemo then home (cross our fingers) The tricky thing about that is that Chemo therapy kills everything even the good. So a week after the start of a session her Immune system weakens or should I say it is completely wiped out. Thus, she is at risk for any infection or sickness. If she gets a fever we automatically go to the hospital for 3/5 days to make sure it is not an infection. Round One went pretty smoothly. She took it like a champ. She lost her apetite for a couple of days but she just sleeps off her icky feeling. She only threw up once and of course ALL over me. Lately, her hair is starting to fall out. It is not like she has much to begin with but of course it is still sad. Her leg movement is getting much better. It isn't like it should be but compared to how it was right after her surgery it is much better. She uses her hands great and wants everything in her hands. Everything is "hers." Her personality is coming out big time. She is such a goof ball. She talks and screeches and squeals all day. When she starts talking she will never shut her mouth!!! She loves to listen to music and dance while we do her leg and neck therapy. She giggles and laughs all the time. She has an infactuation with mommy and daddy's face. She loves to touch, stroke and grab your nose and mouth. She also loves daddy's not really there goatee and the feeling of his shaved head. One thing I do want to warn you about is her temper and when she doesn't want to do it, she will let you know. Her attitude is great. She may look like daddy and act goofy like him but she sure as hell has my attitude. When she wants something she wants it NOW! So as you can see, she is doing great and staying positive. Staying positive is my one main goal not only for me but for her. There have been studies (on adults) on patients with cancer and those with a positive attitude and happy about life went into remission quickly and more often than those who thought differently. Also, there is a lot of talk and research that says children have a better chance of overcoming this illness than adults. The survival right has skyrocketed in the past couple of years to nearly 80% of children surviving this illness. All these studies about childhood cancer has to continue and even for infants 0 months to 1 year old. Did you know that there is little, if at any, research done on infant cancer?? (0-1year old) The reason being that it is really rare to see it in someone so young. So more research is def. needed!!!!!!!
July 10, 2007
Ella's 1st Chemo session is over. She started it on July 4th and ended on July 7th.
She smiled, laughed, and and ate her way through it. Auntie Kristen Reale came and stayed two days with Ella and Mommy. Thanks to Kristen on making it easier on Erin.
Erin has been a trooper through all of this. She has become one tough lady!! She became S certified PA in 2 weeks (She knows everything about everything already)
Just remember to keep praying for Ella and please support this family in their time of need.
bravenet.com