Monday, November 30, 2009 8:19 PM, EST
Totally jinxed Ally. The doctor called with blood test results and said Ally needed to come up for a transfusion. She called back a minute later and said they wanted to keep Ally overnight. Her counts were VERY low. We have not seen counts like this since Ally was in Boston for her Stem Cell Transplant.
And the hair. Daddy and I noticed lots of Ally sized hair on her shirt and pillow today. Oh well. She is a cutie when she is bald.
I saw myself for a split second on Extreme Home Makeover, and only because I knew exactly where I was sitting. It was when Ty was panning the hospital with his hand held camera. Daddy and Ally were on the other side of me and cut out of the shot. It was still a good episode, and not about Ally, so it is probably a good thing she wasn't in it; because she would have stolen the show.
The plan is for Ally to get platelets and red blood cells tonight and go home tomorrow morning, as long as her temperature stays good. (Wait...did I just jinx the poor kid again?)
Monday, November 30, 2009
Sunday, November 29, 2009
Sunday, November 29, 2009 6:15 PM, EST
Ally does not like to follow orders. Her doctors thought for sure that we would be back at the hospital by now with a fever...nope, Ally has decided to not have a fever. We like her for that.
However...we did have that little visit on Thanksgiving to the emergency room. Good news, Ally can pee now without it hurting. We were all very excited about that. Miraculously her rash has disappeared as well.
Ally's blood counts are low (red and white). Most likely she will need to go to DHMC for a transfusion tomorrow for red cells and possibly platelets. The injections we give her every day will help her white cells build up. Right now she has less than 0.1 white cells. Which means she pretty much has no white cells, which means she cannot fight off any infection, which means, she stays home. She is used to being able to go places now, and is confused when we sit in the car while Daddy goes into the restaurant to pick up the food.
Ally has been in a great mood (as usual) and very cuddly. She still is lacking energy, but will have a boost of it every now and then. She is still not eating great, and when we were at the hospital on Thanksgiving she had already lost about 2 pounds.
Extreme Home Makeover is on tonight at 8:00 on ABC. There is a small possibility we will be in the background of one of the shots at the Children’s Hospital.
P.S.: We are pleased to tell you that Ally has not lost any of her hair yet! Keep your fingers crossed that it will stay in this time!
Saturday, November 28, 2009
Thursday, November 26, 2009
Thursday, November 26, 2009 7:56 PM, EST
Ally likes to keep things interesting. We ended up spending 3 hours in the ER this afternoon.
Ally woke up in a great mood and with a dry diaper. Usually it is very wet, as we give her liquids all night long through her mic-key button. When she finally did pee she started to cry and said it hurt. Then she just played if off as if it were no big deal. So, we headed to Grammy and Grandpa’s house. Every time she peed she cried. So, we ended up calling her doctor and she was able to get us in to the ER right away (with a doctor waiting for us to show up). Great that we got to go right away, sad because we never got pie today. (You can feel sorry for us.) They determined it is not an infection, but just chemo making her irritated. So, we have cream and baking soda baths ahead of us. To top it all off Ally has developed a rash around her neck, down her back, where her IV was, and where her diaper rubs against her belly. The chemo is making her skin very sensitive.
Do I even need to say it? Ally was great at the hospital! Of course.
Happy Thanksgiving! (Even with the ER trip this one was better than last year, because last year Ally was in quarantine and we didn't get to see anyone.)
Slice and "dry" bread in 200º oven, cube
Wednesday, November 25, 2009
Wednesday, November 25, 2009 1:37 PM, EST
Ally had blood drawn this morning. Her counts were low when she left the hospital, so they wanted to check them today to see if she needed a transfusion. The labs were drawn at 8:30 this morning. I still have not heard from the hospital, so I am assuming we don't need to go today. Chances are, if we are not already in the hospital for a fever, we will be headed up on Friday for a transfusion.
Ally has been lacking energy since we have been home. She has wanted a lot of lap/reading book time. Her naps have been longer than usual, and we are putting her to bed a bit early. The kid is wiped out. All the extra cuddling is great though!
As I was looking through our pictures from the hospital I noticed Ally's "no - no". This was the cast like thing on her arm in the pictures. It is simply meant to keep Ally from pulling out the IV in her arm. She adapted very quickly to not being able to bend her arm. It was really cute when she held something in that hand and then used her good arm to manipulate it. It took her a good hour or two when it came off to start using that arm again..png)
We have begun Ally’s nightly feeds again. Before chemo she was getting 38mls an hour (30mls=1oz) for about 10 hours. The first night back we gave her 10mls an hour, and last night bumped it up to 15mls. She is tolerating that okay, but is still not interested in eating during the day...there go those awesome 24 pounds she used to weigh. We knew this would cause her to lose weight. Grrrr.
That's all for now. We are hoping to be able to see Grammy and Grandpa (as they are only 15 minutes away, and if we need to head to the hospital it is not too much of a longer drive...so sad to miss the Grammie and Grampa side.) for Thanksgiving tomorrow. It will be Grammie’s birthday the day afterward.
Happy Thanksgiving. We have a lot to be thankful for this year!
Monday, November 23, 2009
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Monday, November 23, 2009 6:58 PM, EST
Ally sure does like to keep things interesting.
She took a 20 minute nap on the ride home. She zoned in and out for the rest of the afternoon and finally fell asleep on Daddy's arm around 5:00 this evening.
Meanwhile we were checking her temperature. If it reaches 100.5 we have to call the hospital to let them know we are on our way back to be admitted, so they can start giving her high dose antibiotics. At 3:00 it was 99.9, at 4:00 it was 98.9, at 5:00 it was 100.4. Ahhh!
At 5:45 Ally's oncologist called to let us know labs will need to be drawn on Wednesday. I tell her of the 100.4 temp and she says not to worry. Ally's counts are good enough right now to handle it, and we only need to worry if she starts getting/acting sick. phew!
So, we decide maybe we should just bring her upstairs and put her to bed in her own crib. That was 6:30, she is not too happy about it, but will settle down soon....right?
So our plan is to check her temp every couple of hours tomorrow. If she is out of sorts or if it climbs higher than we want we may be headed back to the hospital sooner than we thought.
I'll keep you posted!
Monday, November 23, 2009 8:07 AM, EST
I just talked to Daddy on the phone. The night went pretty well. At one point her temperature was 38 (a fever in Celsius), but is quickly came back down to 37 (a perfect temp). They will be keeping a close eye on that. It could mean she will not be coming home today, but we won't think about that. Daddy also told me that at 6:00 this morning Ally sat up in her big girl bed and declared "Ally thirsty!". Yeah! She still has not eaten anything of significance since Thursday of last week. (Not that the sippy cup of water is significant, but at least her tummy is ready to receive substance again.)
As soon as I know if Ally will be coming home today (and I have a break from my school training) I will let you all know!
Thanks for the nice words, it has been a tough couple of days.
Sunday, November 22, 2009
Sunday, November 22, 2009 9:15 AM, EST
Yesterday afternoon Ally was in a fantastic mood, we visited the playroom and watched one of the other patients (about age 1) make silly faces at Ally. The anti-puke meds worked really well.
Ally did a great job last night. She fell asleep quickly, and barely woke up for diaper changes. The 6 hour chemo she had required her to pee frequently. There was a medication added to the chemo to help her pee, but it wasn't enough, so they had to give her more. This meant frequent diaper changes last night. Ally only puked once last night, and meds were quick after that. She fell asleep right after.
This morning she is kind of zoning out. She just had a huge puke (I have no idea what she is puking up because she has still not eaten.), the nurse just gave her the good anti-puke meds! (This one tends to keep her awake, so we just have to use the "ok" puke meds in the middle of the night.)
Ally is requesting books be read to her.
Today she only has one chemo (around 2:00) today. This one only lasts a 1/2 hour. We are hoping to be able to take her for a walk around the hospital this afternoon. (The 6th floor on the other side of the building has some good toys!)
I am headed home tonight, for work tomorrow, with the hopes of meeting Ally and Daddy at home after work!
Saturday, November 21, 2009
Saturday, November 21, 2009 10:24 AM, EST
Ally declared, "Ally not sleep tonight" after I left the hospital last night. It was after 9:30 before she finally fell asleep. She slept well until 3:00, when the vomiting began. She got some meds for that pretty quickly, but the puking did not stop. She was off and on for a while, until we could give her other meds. The second dose has done the trick. Ally is happily playing on her bed (coloring, Candy Land, books, and kitchen stuff...as I type Daddy is building a fort). She has not eaten since Thursday night. The doctor said she expected as much. We are expecting her to lose weight (Ally, not the doctor). Ally has 2 days of the yucky 6 hour chemo, and after that her appetite may pick up, or it may not. They are able to push the chemo up 2 hours today, so it should be starting around 11:30. That will run until 5:30, when she will get the other chemo. Tomorrow she will just get the second chemo, which they will be able to move up 4 hours, to 1:30, and then on Monday they will be able to run it in the morning, helping Ally get out of the hospital before it turns dark. (Hopefully)
If we can keep the puking under control it looks like it will not be too bad of a day...we were hoping to leave the room at some point, but Ally is hooked up to 2 IV poles, and doesn't seem to want to get off the bed, so it might not happen.
Here is to a good day!
Friday, November 20, 2009
Friday, November 20, 2009 7:45 PM, EST
Well, our family hit MANY emotions today. Our day began about 5:45, with a wake up for Ally, who of course woke up beautifully. She was chatty and fun on the hour+ ride to the hospital. They were able to take us right in. Labs needed to be drawn this morning, to check her counts. This has always been a formality, as Ally's counts are always good......until today. After we had been waiting a while the nurse came in and told me it looked like Ally's counts were going to be too low to do the chemo today. A feeling of utter defeat. We had not been looking forward to this, but had geared ourselves up for it and now the plan was crashing into the ground. We were informed that a call was placed to Sloan Kettering (Ally's NYC doctors). An hour or so later we get the go ahead, her counts were lower than protocol called for, but not much lower, and if we want her ready for surgery in January we needed to do the chemo now. Good news....now we just wait for the pharmacy.
Finally everything is ready around 1:00, but Ally is not quite hydrated enough, so we check her urine one last time in a last ditch effort before we put her down for a nap. Good news! Chemo is hung by 1:30 and Ally is asleep by 1:35. The earlier the chemo goes the better, because it lasts 6 hours, with us having to change her diaper every hour for those 6 hours, plus the 2 after it, so it is already bringing us to 9:30 tonight, with another chemo to hang after that, and then the whole process again tomorrow. So, we happily hang out in the cancer clinic waiting for our bed upstairs, and wait, and wait and wait. At 4:00 they said they just needed to clean it, and they sent for someone to clean it "stat". At 6:00 we finally made it up to the pediatric floor. I know I don't need to say this, but I will: OF COURSE ALLY ROCKED THE WHOLE DAY! She never complained and kept herself entertained for a good 8 hours sitting on a hospital bed (without watching TV).
This chemo is going to hit her HARD. We will be released on Monday IF she is not vomiting profusely. If she is puking just a little we will be able to go home. That is how bad she will be for a while. They are expecting us to be back on Thanksgiving or the day after with a fever.
When Daddy graciously let me leave the hospital for David's House at 7:30 Ally was still feeling really good, but I could tell the long day was getting to her, and she still had 1 chemo and several diaper changes to go.
Well, here is hoping the anti-puke meds work great and Ally wants to play tomorrow.
Thanks for reading...not the best post, but I am tired and cranky.
Fun Tid Bit: Ally got a big girl bed in her pedi room, instead of a crib!
Plus she weighed 24 pounds today!!!!!!!!
Thursday, November 19, 2009
Tuesday, November 17, 2009
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