Monday, June 28, 2010

Sunday, June 27, 2010

Leaving the Garden

The cool water running clear

down from the mountain

will we wander over?

does it taste as sweet on the other side?

Of course the grass is greener there.

We are here.

By Phil Specht on Jun 26, 2010

Saturday, June 26, 2010

Thursday, June 24, 2010

Ba Da Boom!

Thursday, June 24, 2010 3:13 PM, EDT

When Ally was in New York last week she had her blood drawn and one of the surprises (other than the critically low blood sugar) was a low ANC. For those of you that remember, Ally needed an ANC of 500 to get out of the hospital after her stem cell transplant, and it took her about a month to get that high, after the super high dose chemo. We have not really been worried about her ANC lately, because she is not doing chemo, and the 3f8 does not lower counts. So, everyone was really surprised when her ANC came out at 400 last week BEFORE the Rituximab (which does lower counts a bit). Our oncologist up here was a little worried about such low counts because we are giving her Rituximab next Wednesday and chemo on Thursday. So......Ally had her blood drawn this morning. Her ANC is 2000!!! It must have been a fluke last week, or there may have been saline in the line...who knows? The important part is Ally is good to go next week. We are going to get blood drawn on Monday or Tuesday just to make sure she is stable.

Her cough from the first dose of Rituximab is slowly going away, and her runny nose is slowing down as well. I am hoping they are gone before our treatments next week.

It has been nice being home with Ally these past 2 days (school got out for me around noon on Tuesday).....even with the medication making her emotions sensitive. She is very cuddly, which is nice, except with the sticky heat.

Tuesday, June 22, 2010

Sunday, June 20, 2010

Ally: "Will you open this for me?"
Mommy: "Here you go"
Ally: "Thanks. You best Mommy in Town."

Pome from a Daddy's Girl

I used to climb in your lap
and say Daddy, don't be sad.
And you'd always smile and say
I'm not.

But you were. After you were
gone, Mama gave me some of your
war letters to me.
You worried about what we'd do
after the war, to the losers.

The only fight you ever got into
was trying to stop a neighbor from
flying us around by our arms --
afraid of dislocation.

And I remember the family of eight
you brought home to live with us for months
because they needed us to do that.

And the little boys you escorted
through the shop so they could sell
pop to the workers. And then you stayed
an hour later to make up the time.

After more than forty years,
I still miss you.


Saturday, June 19, 2010


Friday, June 18, 2010

Thursday, June 17, 2010

Thursday, June 17, 2010 6:41 PM, EDT

It is very nice to have Daddy and Ally home!

The Rituximab went well yesterday, and the only side effect we see right now is a wicked cough. This is a very common side effect. We are not sure how long it is going to last, but hopefully not too long. Ally also has a runny nose, but that happened before the Rituximab, so we are guessing it is from something else.

Today, the train was very crowded and Daddy and Ally accidentally got stuck in the "quiet car" on the train. Ally did a great job keeping her voice down, even with the one hour delay.
She has fallen right back into her old routines, and I am loving it.

Daddy told me Ally got several (more than usual) compliments on how pretty, angelic, sweet, etc. she was. Even the doctor whom I am not so fond of, but made a better impression on Daddy this time around, did a double take and said how striking Ally was. Of course we already know how awesome and beautiful Ally is, but it is nice when a stranger crosses the room to compliment your child.

Another compliment Ally got was about any upcoming CT scans that will happen at MSKCC. They were very impressed with how well behaved she was and how well she took direction. So, the next time she needs a CT scan down there they are going to try it with her awake. A parent is allowed to stay in the room with her, and wear a protective vest. They do keep anesthesia in the room, just in case Ally can't handle it. They like to start with the CT scan, because it is quick and the machine is not too loud. This would be a great bonus, and hopefully it will mean less time under anesthesia!

I think she grew taller in the 4 days she was gone. She now weighs 25 and a half pounds!!!
Next week we need to get a blood draw on Ally, and then she has a second dose of Rituximab on the 30th.

Enjoy the warm weather this weekend!
Happy Father's Day!

Love this!

Wednesday, June 16, 2010

Wednesday, June 16, 2010 1:03 PM, EDT

Scans are good!!!

Tuesday, June 15, 2010

Tuesday, June 15, 2010 6:12 PM, EDT

Let me start by saying: we do not have test results.
Here is why:

Ally had to do a urine collection this time around. If you have been reading our story for a while, you know that the 4 hour urine back sucks and usually ends with a spill. Well....Ally is potty trained now! So, the plan was to get her last pee before bed, and then her first pee in the morning, in a "hat", in a toilet. This is fine, no problem. Here is the catch: for this particular urine collection she was not allowed to eat anything with chocolate, vanilla, citrus or tomatoes. This meant she could not have her overnight feeds, as the formula is vanilla flavored.

So, when Daddy and Ally got to the hospital they drew some blood. This was around 9:00AM. Her scan was scheduled for 10:30. At 11:30, they finally came and got Ally and said there would be no scan because her blood sugar was 19, they can't put her under with that low of a level, and they don't do that particular scan after 11:00.

They let a 3 year old sit in a waiting room for over an hour (they should have had those critical results by 10:00) with an dangerously low blood sugar.

Daddy did some stern talking about their lack of not coming to get her with such a critical value. They hooked her up to an IV, to get her blood sugar up (the whole time she is still not allowed to eat). Then Daddy had a talk with the doctor (who has been very incompassionate toward our family in the past) who was very compassionate today, and promised, if her blood sugar came up and she was alert and ready to go, they would get the scan and bone marrow in today. However, since the scan would be very late in the day, they will not have results until tomorrow. Ally finally got her scan at 2:30 this afternoon. She was out until 4:30. Then she ate 2 peanut butter cups. The last time she had anything to eat was around 7PM the night before.

Today Ally was cranky. Good for her.

Daddy is my hero...I guess I owe him a back massage. I love them both very much.

I got this later note from Ally's Mommy, too:

"Wow, they "fixed" the schedule. They might be out Wednesday night, or Thursday morning..."

Monday, June 14, 2010

Monday, June 14, 2010 4:20 PM, EDT

So, things just got worse as the day moved on.
Last week I spoke to the secretary of the Neuroblastoma team and she told me the scans would be Monday and Tuesday and the Rituximab would be Wednesday. This is how today played out:
1. Scan #1 was late, because the hospital did not have the CT contrast ready when they said they would.
2. They added another bone marrow draw (painful) for tomorrow, even though Ally had one the last time we were there.
3. They drew another HAMA level today. Reason: they want to check one more time to see if her level dropped. Thus....they wanted to wait for results (which come in very late Tuesday night, thus doctors do not know results until Wednesday morning) before doing the rituximab, just in case her levels dropped. Which means.....Rituximab on THURSDAY!!! AHHHHHHH!
4. They have now changed the entire rituximab schedule. It was supposed to be Wed (as the lady on the phone told me last week), and then the following 2 Wednesdays at Dartmouth. Now, they changed it to Rituximab on Thursday and then 15 days later another dose, then the following day (day 16) a low dose of chemo....chemo? Really chemo? Yes, chemo.... Anyway Day 15 is a Friday and Day 16 is a Saturday...they don't do chemo on Sat, unless you are inpatient. Plus, they told us Rituximab would be WEDNESDAY, not Thursday. They changed the whole schedule without telling us. (We only brought supplies to stay through Wednesday - meds, clothes, nighttime diapers, etc.)
5. Magical Daddy made people look into the whole situation, brought up that Day 16 would be a Saturday and that we were told Rituximab would be on Wednesday. THEY SWITCHED IT BACK!!!!! Yeah super Daddy!
6. Ally was supposed to get an MIBG injection at 2:00, When I talked to Daddy at 3:30, they were still waiting.

Anyway....that is all just schedule change, and we (Daddy, not so much me, because it gave me a migraine and my shoulders are all tensed up) can handle a schedule change...and based on today, it is bound to happen again before they get out of New York.

We still need a clear scan tomorrow. We can handle anything that stupid, poorly run hospital will throw at us, as long as her scan is clear tomorrow. Clear scans, that's all we want.

Needless to say, Ally rocked it today. She always does.

Note from listener: Maybe light a candle for Mommy.

Monday, June 14, 2010 8:45 AM, EDT

Ally remained fever free for the rest of the weekend. She and Daddy had a good train ride to NYC. Daddy said it is super hot in New York. When they got to the Ronald McDonald House they found that the playroom is closed the whole time they are there, due to renovations. Hopefully it will be nice enough that they will be able to go to the park that is a couple of blocks away. Daddy also plans to hang around the hospital so Ally can play in that playroom.

This morning they wanted Ally at the hospital for 7:00 AM to get her CT contrast dye, with her CT scan being at 10:00. Daddy and Ally finally got the dye at 8:00, and they were told the scan would be "delayed" actual time given to them....I am so glad Daddy (the level headed one of us) is there to go with the flow....I probably would have caused a scene.
Tomorrow is the most important scan, the MIBG. Please pray that it is clear.

Saturday, June 12, 2010

Saturday, June 12, 2010 9:04 AM, EDT

A long, rambling story:

So....yesterday afternoon, not long after I posted, I got a call from Grammy ....

Ally had a temperature of 101. Normally at 100.5 we are admitted, but since we are not currently doing chemo I was hoping we could avoid that. I called up to the NH hospital and got to speak with one of Ally's oncologists up there. He said we should wait it out, since she currently wasn't doing anything that lowers her blood counts. He wanted us to wait until her temp reached 102. I also called NYC, because we are supposed to be there on Monday morning, and this whole fever thing might mess stuff up (plus we wanted to know when we should actually be there, since, apparently, they have stopped offering the service of letting patients know when to show up). They called me back and said to go see our local oncologist immediately. I told them I had already spoken to them and they said to wait until her fever reached 102. She said she would talk to the doctor and call me back. That was at 3:45 yesterday. It is now 9AM and they still have not called back. I am going to assume they are okay with the 102 thing.

Ally's temp never got to 102 last night and we secretly dosed her with some Tylenol (as an oncology kid she should not get Tylenol for a fever, because we have to be on top of it at all times, no masking the symptoms), right before bed.

This morning she woke up with a temp of high 99s (99.7, 99.9). She was happy to lay on the couch and watch cartoons. About an hour ago she started moving around and playing. I just retook her temp and she is down to 97.6 (normal for her).

Okay, so now we need 2 prayers....
2. no fever

New Moon, Saturday, June 12, 2010 at 7:15 AM

Earth from the darkened moon. . . . .

Friday, June 11, 2010

Just in:

Ally likes to complicate things. She has a fever. If it goes much higher we are going to need a (hopefully) quick trip to the NH hospital....awesome timing!

Friday, June 11, 2010 12:16 PM, EDT

Daddy and Ally head to NYC on Sunday morning. Ally has a CT scan, MRI and the all important MIBG. The MIBG scan is the one we care the most about. It will tell us if there is any active Neuroblastoma in her body. Her last MIBG was clear. We need lots of prayers and positive thoughts to make sure it stays that way, and Ally remains in remission. This is the 3 month mark, when Ally was in remission the first time, this was the time we saw the tumor pop back up. We really need that not to happen again. We need Ally to stay in remission forever!
Her scans will take place Monday and Tuesday. They will need to stay in NYC for Wednesday as well, because they want to do the first dose of rituximab. Ally will then have a 2nd and 3rd dose at the NH hospital the following Wednesdays....going to the local hospital for the other 2 doses kind of feels like we are going home. I spoke to her NH oncologist earlier in the week, and she is very excited to see Ally (and a little sad, due to the circumstances). Ally will have another HAMA draw on July 1.

Please pray for clear is the most important thing right now.

Wednesday, June 09, 2010

Wednesday, June 9, 2010 12:20 PM, EDT

Ally is still HAMA positive.

As far as I know we are still going to NYC next Monday and Tuesday for scans.

I am waiting to hear back from MSKCC about when we will start the other treatment (at DHMC) to bring her HAMA level down.

Monday, June 07, 2010

Monday, June 7, 2010 2:45 PM, EDT

I just got a call from our New Hampshire Oncologist. IF Ally is still HAMA positive, the mysterious treatment to bring her HAMA level down is an infusion once a week for, I am assuming, a month. She was happy to inform me that the infusion can happen at the hospital in NH (rather than NYC)!!! Of course, we are hoping for HAMA negative, but I am so relieved that we could get the infusion done “at home.”

We will not know the results of her HAMA test until Wednesday. I will be sure to let you all know when I get the info, and have either came down from a high, or processed the stinky news.

Friday, June 04, 2010

Poss's Story ~~

jjl (my possum, not Jen's possum)

I've had interactions with tame and wild animals that I don't give a rats what science would say of it, they've been uniquely incredible interactions in love and trust regardless of the species divide.

One that comes to mind was with Poss, a one eyed wild possum who took to joining me for lunch some days when I was at uni. She came looking for food one day when a group of us were in a park. I went back and we formed a relationship that lasted until I finished uni.

We would interact a couple of times a week and it was wonderful. I would go to near her tree and call her 'Po-oss'.. she would come running, I'd sit on the ground and she'd sit on my lap, front paws extended up my chest, looking into my face and chattering excitedly - catching up on her days since I'd seen her.

From her chatter I may not know the absolute content, but I knew when it was scary, or sad, or happy to see me, or angry.. sometimes she was if I hadn't seen her for longer than usual and after some soothing she'd be fine again.

And sometimes she'd tell me big, huge stories that would have me wide eyed - even if I didn't know the actual details - the emotions were all there.

I'd open my lunch box and she'd immediately want the chocolate cake or biscuits, but I'd make her eat salad and fruit first. I would hold the food, okay, sometimes she'd grab the lot off me, but still sit on my lap to eat it. But mostly I would hold it and she would wrap her paw around my little finger as she ate from my fingers - like a little baby does when feeding. She would make comments and keep looking at the biscuit or cake for afters.

We would 'chat' the whole time, sometimes if I got it wrong - what she was talking about, she would change her tone to almost condescending until I got it right. Once she even slapped me with her paw when I gave her one too many pieces of lettuce and told her she had to eat it when she wanted cake. Possums can bite and scratch, but she never did.

Once she tricked me and stole a piece of cake wrapped in plastic and raced up her tree with it. Me pleading, scolding her bring it back, that I would give it to her if she let me take the plastic off. She argued for awhile safe up in her tree, but then sheepishly did bring it back when she couldn't unwrap it and I was scolding her not to eat the plastic.

A tourist was watching me, shaking his head (lol) but when she brought it back and we settled back down he was amazed.

She was pregnant and with only one eye used to get pretty beat up by other wildlife in the park.

We had an interesting relationship. Scientifically it wouldn't count for a thing, but when I took my daughters in to meet her she 'got' the relationship and the social setting of it. She weighed them up, chattered on my lap, holding my fingers as she took food from them, and when she was done impressing them she looked deeply into my eyes for a moment and then brought her baby out of her pouch to show me.

Reciprocity. She was honouring me as I had honoured her by bringing my girls to meet her. She knew the relationship.

The sad end to this tale was I went to see her one day and she was a mess. She was totally agitated and desperately telling me something was very wrong. She wasn't even interested in my food but would alternate sort of grabbing my shirt in her desperate babble and cuddling up to me in almost exhausted sadness.

A couple of rangers came up behind me and were standing watching. I was desperate to know what had hurt her so much and once she adjusted to them being there asked them if they knew her. They were shaking their heads saying they'd never seen anything like it - our relationship - then I asked if they had seen her baby as it had been almost big enough to come out of her pouch and she was noticeable thinner.

They asked where her tree was and when I pointed to it they sadly said that they had found a dead baby at the base of the tree a few days before.

Poss and I still met, but she was different. She was in mourning and it was like her whole purpose was gone. She was less hungry and less talkative, and yet she would still cuddle up to me and chatter softly.

~~ Smiley Jen



Tuesday, June 01, 2010

Tuesday, June 1, 2010 6:16 PM, EDT

We had a super fun weekend. We saw lots of friends and family. Ally had a wonderful time visiting with children her own age, and seeing some new people.

On Thursday Ally gets blood drawn (at home). This is to test her HAMA level. We will not know the results until next Wednesday. We are hoping for a negative HAMA. If this is the case we (Ally and Daddy) will head to NYC in a couple of weeks for another round of 3f8 and scans. If she is positive then we begin a treatment to bring her HAMA level down. (We have NO IDEA what this treatment is. We don't know if it is a medication we can get at our local pharmacy, or if she needs to go to a hospital for treatment, and if she does, can it be DHMC rather than MSKCC?) So many questions in the air right now....nothing like planning things last minute.

Thankfully Ally is off the medicine that messed with her moods. This weekend it was nice because even though she was still on it, we were able to enjoy "not crazy, mood swing Ally". The mood swings hit around 5:00 each night...just as we were leaving friends' houses. (You’re welcome, by the way!) Last night and tonight seem to be a little less crazy, so hopefully by the end of the week we will have Ally back at 100%.

What a 3 hour old reformatted computer defrag looks like.