Gianni Gheno
Bruno had a fun day with Auntie Jen (got to see the Chipmunks Movie; A-L-V-I-N!!!!)
Tuesday morning we were planning on letting Gianni go to Miss Martha's, but I noticed a bit of blood in her morning diaper - not as alarming as it sounds, but it does warrant another trip to the hospital. The concerns include dehydration, reaction to the platelets, infection, or some myriad of combinations of the three. Because I had already packed for Miss Martha's, we were amply supplied and had everything we needed as we waited for the tests to be run. The big challenge was getting her to pee in a cup . . . oh my, the nurses will have to establish a plaque on the clinic bathroom for us - we stayed on that pot for 3 hours! The nurses were funny though, we had every old wives tale implemented in that 10x10 room . . . peppermint oil, tubs of warm water, running water, ice, juice, you name it! Eventually we had success and were able to go home. She was super dehydrated so the infusion of fluids was a good thing.
The good news (there always seems to be good news!) is that her counts are up which means we can now forgo the s-h-o-t until the next cycle (hallelujah!! - although, I've gotten so I can even administer the shot all by myself - who knew!?!)
Our main challenges now are to keep her feed, hydrated, and pooping; its funny how there is this big C-A-N-C-E-R to fight and all we obsess with are the most basic bodily functions.
The picture was taken during Christmas-time (I think it was while we were there for her F&N); a few 49er players, coaches, and their wives and significant others distributed "Build-A-Bears" that they had made to all the kids. Gianni picked a "Princess Bunny" (of course), and had a nice visit with one of the coaches wives and her baby boy.
===Funny Gianni===
Miss Martha has always called Gianni by her middle name, Bella. When Gianni spent some time with Miss Martha last week, she had to correct Miss Martha by saying, "Me not Bella, me Gianni Gheno!"
Dont' bother me, I'm sleeping.
Today's (well I guess yesterday's by now) clinic visit went well. The access was not as bad as I had anticipated, she did really well, very brave. To help her out, the doctors gave us a numbing cream to place on the area where the poke goes about 45 min to an hour beforehand. As with the previous port, stickers (i.e., implements of torture) are generally used to hold things in place. Removing these stickers ends up being the most traumatic part of the procedure. Our oncologist suggested using Glad Wrap "Press N' Seal" instead of a sticker to keep the numbing cream in the right spot for the duration. I bought the JUMBO sized box of "Press N' Seal" at Costco and Bruno, Tony, Gianni, and I played "stickers and lotion" for two days getting her prepared for the big day. I won't share all the fun body parts that can be stuck with Press N' Seal, but you can imagine the fun. Bruno wore his "sticker" to school (I did not even try to explain); Tony, Gianni, and I showed up at clinic all with matching stickers. And even though Tony and I tried the actual numbing cream to make sure it worked, the role playing stopped when the nurse pulled out the needle!
Her counts are low (as to be expected) and she is neutropenic, she will have to go in for transfusions (platelets and RBCs) by next Monday. The results of te LP were negative (that is VERY good). She is not responding so well to the drug they give us to stimulate her white blood cells (G-CSF, the s-h-o-t), but that has a bad news/good news element. The thinking is if she does not respond well (some kids don't), then why bother? Dr. Trish will take a look at how well she does this cycle and assess the usefulness during future cycles. Barring an F&N (please knock on wood as soon as you read this!), the next big milestones are:
- Clinic next Monday and Thursday
- Clinic the following Monday and Thursday
- Our 1st MRI since post-surgery
The picture is actually of us coming home last Saturday, but its so funny, I wanted to share. Note the cookie (untouched) in her right hand.
Love you all - thank you for keeping us in your thoughts and prayers!
Chillin' with the work mommy brought home...(nice hair do!)
This last few days at home has been remarkably "normal". We've taken advantage of the main benefit of Gianni's new port and dumped that little booger right in the TUB. I can not express what a relief that is - her and Bruno have really missed that simple, nightly ritual. She seems to feel pretty good, she is tired but all in all keeping up with a relatively normal schedule. In fact, Gianni spent a few hours at her old stomping ground yesterday (Miss Martha's). She got to spend time playing with her buddies, picnicking outside, and brushing up on her old tricks. She really did well and it was a great homecoming with Miss Martha.
Tony and I are getting pretty good at the s-h-o-t-s, at least it feels a little less traumatic (for us - I'm sure Gianni would not agree!) and we are getting closer to finding a handle on the whole poop issue.
We go to clinic tomorrow which will be her 1st access to the new port - not looking forward to that. She will also get another "bump" of chemo, so this weekend will be pretty low key.
Thanks for all the good thoughts, prayers, and wishes!
Super Gianni
Home again, home again, and boy does it feel good! This round seemed to go a bit smoother than the last; the doctor's cut down her chemo a bit and coming home with no tubies attached was a bonus. We are back to giving daily s-h-o-t-s but it seems a small price to pay for having her home longer. She did pretty good with the chemo, some nausea, a few headaches, and a bit of sleeplessness. We have a day or so of dealing with the mood swings and irritability that arises from the steroid she takes . . . but honestly, not much different from the mood swings and irritability that arises from her being three. All in all, she did just great.
We are trying to stay ahead of the constipation issue (who knew what a BIG deal pooping could be), so far so good (I won't gore you with the details!). Her appetite is good, although strange. We are back to salami, frozen waffles, "cold" macaroni and cheese, dried fruits, and MILK, MILK, MILK. I'm learning a few tricks for loading calories . . . ever tried mac n' cheese made with condensed milk...? Yummy = )
The docs also gave Gianni some relief on the "pokes" this week by allowing us to postpone her Monday blood draw until Thursday's clinic visit. Her new port requires a "poke" each time we access the port. Most pain is (allegedly) alleviated by using a numbing cream before hand, but I guarantee the first few times we have to "access" her will not be fun.
The big news this week (if her counts cooperate) will be some playtime with her mommy #2 (Miss Martha) and her ole' gang (Giancarlo, Clair, Baby Paul, and Elodie).
The picture of Gianni was taken on Saturday (last day of hospital stay). She is showing her Super Girl muscles.
====Funny Gianni===
This morning after pulling her shirt down to show me where her "old" port had been and the bump where her "new" port resides; "Mommy, I fell down and my Broviac fell off!"
Gianni and mommy at the P-A-R-K
Gianni was taken to surgery promptly at 7:25 am; she got her new port and the first chemo dose of cycle 2. The first dose is administered into the spine (lumbar puncture, or LP) and therefore requires Gianni to be under anesthesia. She had had a pretty rough time coming out of anesthesia today but once she was able to calm down, all was well. Her new port looks good, we'll see how that transition occurs over the next few days. The diagnostic results of the LP will be available tomorrow or Thursday.
She ate about six packages of crackers (Saltines) and another six packages of "cookies" (graham crackers) in the car on the way home . . . what an adorable MESS. . . . at least it wasn't in bed! She had some cheese and two big bowls of ice cream once we got to the house. Lunch of champions.
We will be admitted tomorrow sometime and be at LPCH for 3 - 4 days.
Bruno is looking forward to being spoiled by Uncle David and Auntie Patricia.
We love you all, thanks for the good thoughts, prayers, and wishes.
Family Gheno
Our Nurse Practitioner warned us that Gianni's best days would be these days leading up to her second cycle, and boy was she right. Gianni seems to be feeling close to her old self. She is eating, sleeping, and getting into all kinds of trouble with her brother. We've had the opportunity to play with some of her friends and even try out her scooter.
The plan next week is to change out her Broviac port for a less bulky, internal Mediport. This will allow her to get back in the tub, lower her risk for infection, and eliminate the need for daily flushes. Because the mediport is internal it does mean she'll get a poke each time it is accessed. However, we use a numbing cream before each poke so she will not even feel it.
Because of the added procedure, our "regular" schedule is a bit upside down. We will go in for the procedure and 1st administration of chemo on Tuesday - we then get to come home and don't admit for the rest of the chemo until sometime on Wednesday. The good news is that if all goes well, we will be home on Saturday or Sunday.
The picture was taken at Elly's house on New Year's Day. The whole family got together to celebrate her 16th birthday.
More later!
Gianni Gheno
