Young Kiowa Girl
Tuesday, March 31, 2009
Monday, March 30, 2009
Sunday, March 29, 2009 8:02 AM, EDT (This didn't actually post for most the day, hence the delay)
The weekend has gone well so far. We had an Auntie visit yesterday and are expecting a Grammie and Grampa today, and perhaps even a teacher friend.
Ally had blood drawn this morning. We are hoping for no call about those. These results will determine if Ally can start her second week of chemo tomorrow. Right now she has a contraption sticking out of her, that will stay in all week for chemo. (See the picture in this journal entry!)
Ally has been enjoying some outside time. She loves to blow bubbles and walk in the mud. We are hoping the rain will let up and we can go outside again today.
Sunday, March 29, 2009
Saturday, March 28, 2009
Friday, March 27, 2009
Thursday, March 26, 2009
Wednesday, March 25, 2009
WEDNESDAY, MARCH 25, 2009 02:26 PM, EDT
Today Ally got ALL of her chemo at home! Daddy administered the first dose. This requires full protective clothing, opening up 6 capsules and mixing it with apple juice, then putting it all in Ally's g-tube. (I will try to get a picture of the whole set up.) It is actually more complicated than it seems. Later in the morning one of Ally's home nurses came and gave Ally her 2nd chemo of the day. Everything went smoothly, and it was nice to be at home!
Ally has been adding a lot of new words lately, some of her more recent ones are: toot, burp, diaper and pancake! We teach our kid good!
It looks like the website will be down on Saturday. I have heard that sometimes updating kicks people off the automatic e-mail notifications, so if you don't hear from me by early next week, check back in.
Enjoy the weather, we are headed out before afternoon nap!
Tuesday, March 24, 2009
Monday, March 23, 2009
Sunday, March 22, 2009
Saturday, March 21, 2009
Friday, March 20, 2009
Thursday, March 19, 2009
Wednesday, March 18, 2009
WEDNESDAY, MARCH 18, 2009 07:59 PM, EDT
Ally had a great day at Grammy and Grampa's today! She even had a visit from an Auntie. This was the first time she has been to Grammy and Grampa's for the whole day since before she was diagnosed. She LOVED playing outside and "un"raking everything Grammy raked up. Ally got to see some birds that were hanging out in the yard. She also liked flying the kite with Auntie. She even went on a walk! It was a super fun day of exploring for Ally!
MONDAY, MARCH 16, 2009 04:17 PM, EDT
We went down to the Jimmy Fund at Dana Farber today. We met with the neuroblastoma expert down there.
There are 3 things we know about that will help beat the cancer down for a while: chemo, MIBG therapy and antibody therapy. Ally has started the chemo, and the expert said that is what she would have done, if she was Ally's main oncologist. That made us feel good. She talked to us about the MIBG therapy. Right now Ally gets MIBG scans to see what the tumor is doing. The therapy is a MUCH higher dose of this radioactive material. It would require a lead lined room, VERY limited access to Ally for about 5 days and a stay in Boston. It is a very new procedure for Boston to do, so they are still working out some kinks with that. This is something we are planning on doing with Ally. The timing would depend on a couple things: how Ally's next set of scans come out (how she is responding to the chemo) and when the room is available (there is only one room they do this in). The antibody therapy is still something we need to find out more about. That would require one of us to be in NYC for 2 weeks out of the month and there are lots of other negatives about it, such as: it is very painful.
The expert could give us no timeline as to life expectancy, as every single case is very very different. She did say IF the MIBG therapy does work, it tends to work well, for possibly months to even year(s). She did caution us though, that Ally's cancer came back VERY quickly, and her Myc-N level is elevated, so great results cannot be expected.
On more day to day news: Ally is doing well with her GCSF injections. She is willingly wearing her new PJ's and still refuses to eat enough to gain weight, so we have to give her feedings through her G-Tube a couple times a day.
FRIDAY, MARCH 13, 2009 05:29 PM, EDT
Ally had a good week. Yesterday she slept a lot. Today she had a 15 minute afternoon nap. Silly girl.
Tomorrow we have to start the GCSF injections. These daily shots to her legs will help her make white blood cells. We are hoping she only needs a week of them, as she has to be off them for 2 days before she can start chemo again, and they want to start her on Monday the 23rd.
Have a great weekend. We are off to the Jimmy Fund Clinic on Monday.
_______________
SUNDAY, MARCH 15, 2009 06:35 PM, EDT
Another fun weekend in the household. Ally got to meet 2 other kids this weekend. She played NEXT to her new 3 year old friend, and LOVED to bonk the nose of the "baby", who also enjoyed the nose bonking, especially when she could get Ally's finger in her mouth! Ally also got to go to the World's Best Breakfast Buffet this morning with her Mom's relatives. Yummmmmm! This afternoon Mommy, Daddy and Ally headed south so Ally could Build a Bear (Dog). Ally was a little overwhelmed, so we gave her 3 choices and she picked the little doggy. Ally was not a huge fan of the stuffing process or the bathing process. She did like to look at all the MANY things to look at in the store and finally settled on some lovely green scrubs for her new doggy, Woof, to wear. I plan to get some pictures of Ally with Woof and post them sometime this week.
Tomorrow we are off to Dana Farber to speak to the Neuroblastoma expert. We'll let you know how the visit goes.
TUESDAY, MARCH 10, 2009 06:53 PM, EDT
We found light up shoes that are only a little too big for Ally! Yeah! And she is actually wearing them...Ally has issues with new things we want her to wear. She is busting out of her old jammies and throws a HUGE fit whenever we bring out the beautiful new jammies we got her. So, we are happy she is wearing the shoes.
It seems chemo will not take place at home this week. It was harder to coordinate than originally thought. Oh well...
{Sounds like Ally gets to show off her blinky shoes at the hospital this week.}
Tuesday, March 17, 2009
Monday, March 16, 2009
Sunday, March 15, 2009
Saturday, March 14, 2009
Friday, March 13, 2009
Thursday, March 12, 2009
Wednesday, March 11, 2009
Tuesday, March 10, 2009
Monday, March 09, 2009
MONDAY, MARCH 09, 2009 06:30 PM, EDT
Ally made it safely to and from DHMC today. She is only getting one chemo drug this week (last week she got 2), so after today things should run a little quicker for Grammy and Grampa. They had to take labs this morning, and wait for them to come back before they could start the chemo. Her labs came back good enough to go ahead with the chemo, but her counts are dropping. It looks like we are going to have to do GCSF again. Those are daily shots in her leg to boost her white blood cell count. We will have to make sure she only comes in contact with healthy people again, at least until her counts come up.
Ally continues to amaze us with her energy and attitude. No one bothered to tell her she is very sick. We feel so lucky to know her and be loved by her.
Sunday, March 08, 2009
SUNDAY, MARCH 08, 2009 08:01 PM, EDT
Ally's weekend was super fun. On Saturday she visited with Grammie and Grampa, as well as Auntie, Uncle, Great Auntie and Great Uncle. She had a blast showing off, playing with Play Doh and dumping snow on everyone's feet. After we left there we headed over to another friend's house, where Ally and a little 3 year old boy made fast friends. He was VERY generous in sharing his toys, and Ally LOVED to play on his computer. We can't wait to see them again!
Today Ally got to go out to lunch with Auntie and Uncle (and Mommy and Daddy) and then do a TON of walking around looking for size 5 1/2 or 6 toddler shoes that light up when you walk....they do not exist in our general area! (We did run into a friend from the school where I teach...I will let all my teacher friends guess who it was and then be jealous of her all day tomorrow!)
The time change has been okay. Ally woke up an hour later than normal (according to old time) then we made her nap according to new time, so she was only awake for 2 hours before nap time. Her second nap of the day was great, but she is currently having trouble with bed time....grrrrrrr.
Ally goes to DHMC tomorrow for chemo. There is word that chemo at home might begin this week!
SATURDAY, MARCH 07, 2009 08:03 AM, EST
Ally made it through her first week of chemo with flying colors. She has had very little in the way of side effects and she still has all of her hair. The nurses said it would take about 3 weeks for it to start falling out again. :(
We have a pretty busy weekend on our hands. We are going out a-visitin' today and shopping tomorrow. Ally LOVES to shop. She likes walking around and touching everything! Luckily we are not at the point where she understands she should could actually keep some of the things she sees.
Grammy and Grampa got word that chemo at home could start as early as late next week! Too bad the snow storm is scheduled for Monday!
Have a great weekend (shortest one of the year)!
Thursday, March 05, 2009
Wednesday, March 04, 2009
WEDNESDAY, MARCH 04, 2009 04:47 PM, EST
Ally has been doing well with her chemo this week. She still has lots of energy and the pooping situation seems to have resolved! This is a "lighter dose" of chemo, so we will see how she is feeling on Friday. She gets the weekend off and then, back to DHMC every day next week for more chemo (day trips).
We will be headed to Dana Farber on the 16th, to talk to the Neuroblastoma expert. Ally gets that week as a break week for chemo. She will start up again for 2 weeks on the 23rd. Good news about that - New England Life Care, the company that delivers all the supplies we need for Ally, will be able to administer the chemo at our house! We will only need to go to DHMC for the very first day of each round, for random days they want to see her and for scans to check what the tumor is doing. YEAH!
Tuesday, March 03, 2009
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