Cycle 3, Day 23 [clinic]

No news has been good news. Today was clinic and everything went just fine. Her numbers are good. She gets a bit stressed with the access and all so some minor bumps, but better than most.

Tony and I brought home two goldfish for the kids; bona fide "fishbowl" fish. Gonna be fun.

Auntie Jen and Jessica are treating Gianni and me to a show this weekend - Disney Princess Wishes, and its ON ICE! Gonna be fun!

We are scheduled for a Wednesday admit at Stanford for the lumbar puncture and then home. Thursday will be the official admit for the 4th cycle of chemo. We will be trying out the El Camino hospital again. Seems like we've had more days in than out this cycle so its hard to start planning for cycle 4. The good news, we have lots of fun distractions this weekend and she is feeling spunkier every day. We are eagerly awaiting Auntie Amanda and all the goodies planned for a girl's weekend (Tony and Bruno are being sent to the cabin).

Cycle 3, Day 20 . . . HOME!

Gianni getting coochie from Dad (honker laughing!)

We are home!!! Whew. . . no need to express the good news part of that statement. Gianni's counts started to rise on Friday and were high enough to get us out of that popsicle joint Saturday morning. She is doing well; a bit unsteady on her feet (that's a long time to be stuck in bed!), a little tired, and not interested in food of the constituted type but doing well. This is the part where the NG tube is a great addition to our little program. She is getting all the nutrition, hydration, and supplement she needs - no stress.

She has been home just over a day and we can see the improvement in her mood. More good news - no chemo again until 05 Mar; we have over a week to just coast. We are looking forward to a visit from Auntie Amanda (she's a doctor too, but "only" a PhD so she's okay!) and getting used to the new "feeding" routine. That part is actually not too bad, we've worked things out so she's only hooked up while she's sleeping. It just requires a bit of planning on our part.

Everyone has been so supportive and we really, really appreciated (and needed) it this round. Thank you, thank you, thank you!

Cycle 3, Day 17

Gianni's counts are finally on the rise! This is good news because once they start they go like gangbusters. She has been struggling with fevers and a little nausea so we may be here for a few more days . . . we are hopeful for a Sunday getaway. She's looking good and gaining weight. She may be a bit stir crazy but we've kept her busy with painting, beading, and SpongeBob basketball.

More to come (hopefully from home)!

Cycle 3, Day 14

She keeps on keeping on - progress is slow but most definitely sure. She is looking better and feeling stronger every day. Her electrolytes are stabilizing, she is gaining weight (nearly 0.2 kg/day, just less than 1/2 lb), and hopefully kicking the flu that landed us in the hospital in the first place. The exit criteria we are looking for include 1) no fevers, and 2) raising counts. The counts are still <0, but not to worry - when they start coming back they will come with a vengeance!

--Funny Bruno--
Patients/siblings have to be at least 5 years old to play video games in the Kid's Play Room @ LPCH.

Today when Bruno and I were rehashing the usual, "When will Gianni feel better?" routine . . .

Bruno: "Will Gianni feel better before my birthday (July)?"
Mom: "Almost, but not quite all the way; she will feel better after daddy's birthday (August)"
Bruno: "Great! That means when I turn 5 I can play video games in the playroom!"

Solitude: sweet absence of faces. - Kundera

Every child is an artist. The problem is how to remain an artist once we grow up. - Picasso

Another fortunately/unfortunately brewing here at LPCH: Unfortunately Gianni is not responding satisfactorily to the antibiotics which means she may have some sort of viral infection .. . Fortunately that means she gets her very own private room (so she can't infect any other kids). I can not tell you how much the stress level is reduced with the commiserate peace and quite. The flip side - she is in isolation, which means no play room, or day excursions to the cafeteria, or outside shenanigans. Big trade off, but one I think will benefit her in the long run. I know the solitude will benefit Tony.

She is doing better; Her electrolytes have finally been stabilized and we are now just waiting for the fever to go away and her counts to come back up. Those two exit criteria could take some time to be achieved - - - we are hopeful for mid/end of next week.

She is doing so well in fact that Tony felt comfortable enough to take a quick 24-hour (my bet is it will be less) turn around to the cabin - this is a GREAT thing. We will all be relieved to know that the cabin is still there, and he and Bruno can get the recharge that can only occur at > 3800 feet.

As I write this she is taking her nap and eating her lunch at the same time (another neat benefit of the NG tube). The picture is of her schooling a new friend on the finer art of colors.

Again I am grateful for all the good wishes, prayers, notes, gifts, and thoughts. We all feel your good energies and are truly thankful.

The good trend continues

So today is better than yesterday. She is becoming accustom to the NG and felt well enough this morning to play with mommy. We mostly colored and cut (her absolute favorite past time - always a good for a kid attached to soft rubber tubes filled with interesting content). We are still trying to get her electrolytes balanced; a little potassium here, a little phosphate there, some magnesium, rehydration, and a "snack". Before we know it she'll be in sync. Just a sign of how hard the chemo is on her, but the good news is that it is just as hard on the cancer and we are not helping that to rebound at all. After her nap I'll run her up to the kid's play room and then a romp with Bruno, she'll be all tuckered out for dad tonight.

Happy Birthday to Grandma Austin!

Cycle 3 . . . F&N

We’ve had a few ups and downs, yesterday was definitely a down. Now those days that just seemed average have a new baseline to compare against . . . and they can now join the ups! I guess that’s means we will get to have more ups than downs now.

Gianni came to LPCH for her regular Thursday clinic and before we knew it (+/- a few hours for all the administrative goodies) she had been admitted for a fever while neutrapenic. The rule of thumb is a minimum 72 hour stay, however in her case it will be 4 – 6 days before her counts are high enough to go home. Bummer.

But the worst/good news was her weight has dropped to the point where her doctors ordered an NG tube for administration of nutrition. For all of us laypeople, that’s a feeding tube or nasogastric tube. Big Bummer (sort of). The tube is inserted through her nose and feed to her stomach. The “worst” part of the good news is that putting it in was traumatic. I have a theory, however, that part of the trauma is intended just so that the recipient is incentivized to not remove it – because removing it would just entail putting the tube in again, and from the looks of things that is not a pleasant prospect. It took about 2 hours for her to become accustomed to the intrusion, but to be honest she has been mad at us ever since. She will have to keep the tube until she can maintain weight gain on her own; potentially several months. I still see her strong, fighting spirit as a good thing – she is drawing on something inside of her that is bigger than all of us and I think it will serve her well throughout this long marathon.

There are benefits that outweigh the dread I felt about putting in the NG. To me it seems that eating, and her choice of foods was one of the last bastions of control that she might have had; but because she has her father’s strength of character and complete welter weight fight in her, it seems that to get her healthy and fat again we’ve got to do things this way. So, now for the “good” part of the worst news: 1) Food will no longer be a battle, we can go back to our usual (healthier) diet and she can just eat for pleasure, whenever she feels like it (I can stop chasing her around the house with a spoon and every imaginable kid treat on the market); 2) No battle over meds. The twice a day test of wills has become increasingly difficult – now we just put the meds in a tube, she won’t even have to know they were administered.

They doctors and nurses are taking good care of her. She will get to visit with Bruno tomorrow. I think she is feeling better than yesterday and that is a good trend.

Cycle 3, Day 7 [St. Valentines Day]

Happy Valentines Day!

Today is the day Gianni goes to clinic to have her blood work and chemo bump (maybe a transfusion?). Her counts are dropping sooner than last week so we are anticipating a neutropenic weekend or so.

We are not stressing so much over bodily functions this time (well, at least as of last night!) . . . I won't go into details but we found a mix that seems to jump start the plumbing! She is doing well, and eating okay. Dad is taking very good care of her. Tony even let Bruno stay home a day or two so that she would have someone to fight with, I mean play with!

We appreciate you all so much! More to come.

Cycle 03, home again

Silly Gianni, working on her posture

Well, she did it! According to Tony's calculation we are at least half way through. G'Ma and G'Pa Walker came down from Lincoln on Saturday afternoon. They stopped off at Uncle David's on the way down and picked up Mr. B. We had a fun visit and the kids were happy to play together.

Tony brought Gianni home on Sunday afternoon, he cooked us a wonderful dinner, and we all just hung. I took her and Bruno to the park in the afternoon - after a brief vomit stop for poor Gianni we had a pretty good time. I'm sure all the parents crossing the street in front of us were mortified as I threw a handful of vomit out the window . . . but there's that new paradigm again!

She is a bit tired, but all in all seems to be doing well. We'll go to the clinic this Thursday for her next bump and the associated blood work. We anticipate that she will be neutrapenic and I'm sure a transfusion is in her near future. She is in good spirits and in competition for Bruno to be the ham of the house.

Thank you for all your good wishes and prayers!

Cycle 3, Day 2/3

Dinner of champions

Just a quick entry - Gianni is doing well. We did have to resort to the enema, but that works and I think she feels better. A bit of nausea and associated vomiting but all in all, good spirits and we are more than 1/2 way done with this admit. She had a great dinner tonight - I ran down to the cafeteria and got all her favorites; white rice with "bug juice" (soy sauce), french fries with catchup, and cheese. Top it off with apple juice and you've got the dinner of champions.

We had a fun visit with Dr. Nordt (Ms. Alison to Gianni) and are looking forward to spending time with G'Ma G'Pa Walker and Bruno tomorrow. She is sleeping well and misses her daddy on his night off.

More later!

MRI is CLEAR!!!!!

New definition of crazy hair day!

Yesterday was Gianni's day 1 of cycle 3 - we went in for her LP and MRI (both under anesthesia). She had quite a cold and a bit of a fever so Trish (our super oncologist) went to bat for us and convinced the anesthesiologist that she needed the procedures. She went thru with flying colors (her fever even went down during the procedures!) and came out of anesthesia better than ever before. Tony and I brought her home by 6:30 pm, had a big ole' pizza and switched between American Idol and the Sharks game. We are not big Shark's fans, but Uncle David took Bruno to the game so we were looking for for them in the penalty box!

Trish called us today with the blessed news that Gianni's MRI is totally clear!!! We still are dealing with all the chemo side effects . . . but if it is working, we are not complaining (much).

Today she was admitted to the satellite Lucille Packard Hospital in Mountain View (they've bought a wing of the El Camino Hospital). Very nice, quiet, private rooms, and super personal attention. We are really hoping this works out - if so we will finish out her treatments here. LPCH is also great - just seems a bit more hectic.

We've gotten so much love, support, and good wishes from everyone lately - I cannot thank you all enough. We feel everyone of y'alls good vibes. We are thinking of our family and friends back East - hoping you are all safe and sound in the midst of those crazy tornadoes.

The pictures are of Bruno and Gianni wearing the hats that my mom and Ms. Vicki made for them - Gianni's almost looks like hair!

I'll post more later in the week -

End of Cycle 2

Happy Ground hog Day! Well its been a while since I've updated; however, no news is mostly good news so I guess this is okay.

We had a bit of a scare (and an overnight admission) a week ago Thursday, but all is well now. Gianni was still holding on to her pee (again who knew!!!!), and our oncologist was justifiably concerned. She had us admitted Thursday night to monitor Gianni and find the root cause of the pee issue. An MRI was scheduled for the following morning (to rule out the worst case possibilities) and Gianni was supposed to get a catheter to help her bladder "relax". At the last possible moment before the procedure to put in the catheter, Gianni makes a big diaper! Tony and I immediately went to bat for her to not have to get the catheter (an uncomfortable, and I am sure degrading procedure) until the following day while under anesthesia for the MRI. Doctor's agreed. Once the dam was broken, Gianni had no problems peeing and the crisis was averted; no catheter - no MRI. We still don't know what caused the delay, but most likely an infection of some sort. Regardless, all is good now.

Once we all got home together again, we promptly contracted the ICK; I don't know where this cold came from but it's been a doozy! We called today a success because everyone got out of bed for breakfast!

We've got a relaxing weekend planned to start getting us geared up for cycle 3. Georgia's birthday party for the kids and Super Bowl shenanigans for daddy. Gianni's doing really well, her ole' trouble making personality starts to shine the further she gets from the hospital.

There is a diagnostic MRI planned (she gets one after every even month of treatment) with the beginning of cycle 3. We obviously don't expect to find anything, but can't help holding our breath a bit. We will go in Wednesday for the MRI and LP, come home that night late and get ready for the admission for Cycle 3 on Thursday. Last cycle was better that the first, we can hope this one goes even easier than the last.

Bruno's been such a trooper, he gives Gianni just the right amount of brotherly love and torture - of course shes not shy about the torture part!