Bruno & Gianni: Ready to shred (Gianni's hand on her pink scooter)
Well this stay was not so much fun and we are oh so happy to be home! Gianni was feeling pretty crummy for the majority of the time and she has had it up to her eyeballs with people "touching her body"; and to top everything . . . all her hair came out! She looks cute, and does not seem to mind too much. Some fun was had: Santa Claus visited (she practically climbed to the top of my head to get away from him = )); we made a new friend (our roommate was a little girl Gianni's age); and Gianni (with a little help from daddy and mommy) became the new champion of 2-North wagon racing.
Gianni's numbers (white blood cells) spiked on Wednesday night (from 200 to 900 - this is very good). This meant we could go home on Thursday; and after she was given her scheduled dose of chemo, that is exactly what we did! Bruno was still with his big sis, so Tony, Gianni, and I just had a quiet evening at home. The first night home is usually a bit rough for her anyway. She's suffered a small amount of nausea and vomiting (from Thursday's chemo), but all in all she just seems to thrive at home.
Yesterday (Friday) Gianni and I made a few of those brownies we promised while we waited for Bruno to come home. She did most of the stirring, and a whole lot of clean 'em up of the spoon and bowl.
We are looking forward to a long string of days with no chemo, no s-h-o-t-s, and no F&N. She will start cycle two during the second week of January. Because she had such a hard time with the 1st round, her doctor's are considering lowering her next rounds dosage, or increasing her recovery time. Either way, we are hoping she has an easier go of things.
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Funny Bruno:
"Mommy, Gianni's owie looks just like a rainbow on her head."
Bruno and Gianni school G'Ma on Sticker Booking
Tuesday (just happens to be Christmas) at Stanford . . . we were disappointed at first, but I think all is well. Grandma and Grandpa Walker came to visit, Gianni and Bruno got lots of presents from Santa [ ;-) ], and we all spent the morning and afternoon together. Bruno and Gianni had wagon races thru the halls of 2 North (that's our floor), the whole gang of us had ice cream and cookies in the cafeteria, and we all sat around and talked around the T.V. (except this year it was Shrek the Third, not football). We missed big sis, but since we still have to have our official Christmas dinner "whenever" we'll add her to the melee then.
Gianni won't be able to go home until her "counts are up"; that means her white blood cells start coming back. Typically that takes a few days so we are dug in for 3 to 4 more nights here at LPCH. She seems to be feeling better everyday, she played hard today and enjoyed all the excitement of Christmas.
The doctor's have all told us to not be alarmed, this type of response is not abnormal - in fact depending on how she reacts it could happen every cycle or not ever again . . .
She is sleeping nicely now, all tuckered out from a Christmas we are all happy to have shared, no matter where we are.
Peace to you all this Christmas and always.
Gianni "cutting it up"
She feels a bit better today and we've had some fun coloring and playing scissors (always fun for a three year old).
And just now. . . . Santa came by for a quick visit. I have not seen her move that fast (to me, not Santa) in a long time!
Settled in for s SHORT winter's nap
Fortunately, our family is enjoying a timely Christmas break from both school and work.
Unfortunately Gianni presented with classical F & N (fever and neutropenia) on Friday night/Saturday morning. This means her immune system is at its weakest (i.e., white blood cells are abnormally low; well I guess not abnormal for someone undergoing chemotherapy) and cannot fight off infections. When this happens, even the slightest fever/infection is very serious. When she gets a fever while neutropenic it means an automatic 48-hour hospital stay.
Fortunately, she seems to be doing well, it is only a 48-hour hospital stay, and we have every expectation that we will be home together for Christmas.
Unfortunately, this means the last-minute Christmas shopping (read: any and all) is post-poned to Christmas Eve. . .
Fortunately, all of our friends and family are very understanding and will just love the brownies we will be making and wrapping on Monday night!
Fortunately, while in the hospital all the stressful home care tasks (i.e., shots, care of the Broviac) are done by the very caring and competent nursing staff (not me!)
Fortunately, we have the love, support, and prayers of all of our family and friends.
Unfortunately, I've broken from the model in the book (Fortunately/Unfortunately) but I guess that means we have a lot to be grateful for!
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The picture is of Gianni on Sunday morning during a visit with Bruno.
Tony and I took Gianni on Thursday to get her next dose; only one drug this time, and out-patient. Its great to be able to go straight home, but the chemo is still no fun. She's been feeling a bit under the weather, but that is as expected. She is responding well to the chemo; "well" meaning the chemo is working so she is currently neutropenic (her white blood cell count is low and she is susceptible to everything).
We will be laying low this Holiday; lots of movies, table projects, and we time.
She continues to run the show.
As promised, the folks at LPCH released us from the hospital late Sunday night (12/16). We picked up Bruno from Auntie Jen and Uncle Timmy's and had a late supper of Tony's homemade Chicken Noodle Soup. [Not exactly what the DOCTOR ordered (no fresh vegetables or big chunks of chicken on that list), he sent us home with a whole pharmacy, including a daily S-H-O-T (!)]
She seems to thrive at home, so we are determined to learn to do as much as we can w.r.t. her care so that we can limit the trips to Stanford. This means caring for her port, weekly dressing changes, blood draws, and daily shots. Who knew Tony and I possessed these capabilities?
She is scheduled for weekly clinic visits (some with chemo some without), and will start the whole 28-day cycle over again after the new year (including the initial 3-4 days in the hospital). We will repeat this cycle at least five more times, and hopefully (new paradigm again), seven.
She is sleeping well at night and offering the appropriate amount of resistance to the daily meds. Her appetite is not quite back, but Tony is working on that.
The GREAT news is: 2nd lumbar puncture came back negative (means no spreading to the spine).
We keep on keeping on, we appreciate all your thoughts, prayers, and good wishes.
She continues to run the show; her favorite meal seems to consist of "Princess Waffles", which translates to "frozen waffles". Is that even healthy?
Gianni resting with her new sock monkey
She has had fevers up and down, headaches, some constipation, and all the side effects that go with the pain medication . . . It is entirely miserable to watch her suffer, but she really does seem to be tolerating this as well as could be expected.
Her counts (blood counts) are going to drop as expected which means a blood transfusion is in her near future (probably as part of our weekly clinic visit Thursday).
Hopefully the next update will be from home.
She continues to run the show. When a nurse asked if she had any pets at home (we don't), Gianni responded with a resounding "YES!"; when asked what kind of pet, she says, "A Panda bear and baby, they live in the tree outside my room."
[referencing giant Panda from her Panda Bear classmates]
Love to all of you, thank you for the calls, cards, notes, and good wishes.
Spunky
She seems to be doing well, from what we understand she will start feeling progressively worse . . . and then better before we start all over again.
The biggest nightmare yesterday turned out to be scheduling.
Tony and I are splitting the time between her and Bruno while she is in the hospital. He was with her last night. Gianni's 1st administration of the drug happens while she is under anesthesia; that procedure was from 12 pm - 1:30 pm. After she was out of recovery they send her and dad packing . . . Tony and Gianni did not have a bed until 8:00pm that night! Tony, however, is managing this so well, "No wrong decisions, just lessons so that we can do it better next time." He found the children's play room, some well deserved chocolate milk, and a T.V. with the almighty SpongeBob.
The picture is of Gianni's new hair cut; Tony and I took Gianni to see Elly's mom on Wednesday (11/12). Debbie did a wonderful job on Gianni's do! She looks really cute.
My thanks again to all of you family, friends, and friends of family, and friends of friends. We so enjoy your notes of good wishes, cards, and letters. We feel your support and I am continually surprised at how far our network seems to reach. We love you guys!
She continues to run the show, however, her tactics are turning from vinegar to honey. Tony says last night she was showing the nurses how to do it!
Daddy & Gianni Enjoyed a great weekend at home; Elly, Gianni, and I stayed at home while the boys volunteered to make a quick round trip to the cabin to get the family Christmas tree. Bruno picked it out and it is beautiful. No Charlie Brown Christmas this year (sort of!). While the boys were working hard, the girls enjoyed a night of pizza, cookies, ice cream, and entirely vacuous television (it was great).
After much deliberation, we have decided to get Gianni's treatments at Stanford's Lucile Packard Children's Hospital. Logistically it makes sense and the doctor's and staff are wonderful. We anticipate she will begin treatments later this week.
Gianni continues to run the show, she looks better everyday (picture of crazy hair day not withstanding)!
Just got word from Dr. Banarjee UCSF; results of the lumbar puncture show no sign of tumor in Gianni's spine!
This week has blown by us so fast! Just a quick update today.
Last Tuesday Gianni had her Broviac catheter placed - a big port placed in her chest to allow access for the chemotherapy drugs.
It was a long day, we arrived at 5:30 am, surgery at 7:30, a few other odds and ends and we were sent home ( = ) ) around 6:00 that evening.
The Broviac is an impressive piece of hardware, but she seems to be tolerating it okay. It is my job to now care for this contraption (back to the "new paradigm"). This is my greatest pleasure because if I can do the maintenance it means she can be at home instead of the hospital.
She also had a diagnostic lumbar puncture to verify that the cancer has not spread to her spine. We are still awaiting the results of this test.
Her treatment will most likely begin next week.
Bruno continues to support his little sister in the best way possible - - treating her exactly the way he always has. He keeps asking me, "How may days, I mean exactly, before Gianni gets better? Like 7, or 4, or 16?"
I like those choices!
Gianni had a great birthday, I think a good time was had by all. We did up the princess theme - all her friends wore costumes but after all the talk, I could not get her into her princess dress.
We ate spaghetti, cake, cookies, and ice cream. The kids played, played, and played. It was a great, big, WONDERFUL mess.
Gianni's surgery to put in the central line and gather other diagnostic data (lumbar puncture etc.) is tomorrow at 6:30am. We are hoping to be discharged within a day (or two).
Bruno celebrating early + Gianni striking a pose
We got to come home! The doctor's at UCSF discharged Gianni late Thursday night for a few days at home; we go back to UCSF on Tuesday morning to have surgery to place the semi-permanent port that will be used to administer her treatment.
Tony and I met with the oncologists last Wednesday, I think he may have been a bit more shocked by the intensity of the prognosis and treatment than I was - we have a long road ahead. After the meeting, we talked with some friends and colleagues and have decided to seek another opinion regarding her treatment. We are resigned to the fact that chemotherapy is the appropriate course, we are just looking for another data point. We meet with Doctor Fisher of Lucile Packard Children's Hospital (Stanford University) this Thursday. This will delay Gianni's chemo for a few days, but both UCSF and Stanford have assured us that this does not introduce any risk.
Time at home has been indescribable; just the sounds of our full house are music. I even had to discipline Bruno and Gianni last night for "acting up" at bedtime. Brings tears of joy!
Today is Gianni's birthday, she is 3 years old. We celebrated last night with Grandma and Grandpa Walker and GPs Austin (via phone) - between you and me, Gianni is about the only one who can keep up with those rascals! We will have a low-key "Princess-Style" shindig with a few of her friends at the house tomorrow.
Her coordination and post-surgery neurological "quirks" continue to improve and are most likely only noticeable to me and Tony. I can barely keep up with her (per usual).
I continue to be touched by all your prayers and good wishes, we can't thank you enough.
She continues to run the show.
Bruno & Gianni: Ready to shred (Gianni's hand on her pink scooter)
