Nine Down

We were in the hospital last week for our short stay chemo (nine cycles down!). The three days felt like nine.

Millie could not be cheered up in the hospital- she refused to talk, to be examined, to participate in any way other than passively. I was able to briefly engage her with games of catch, or walks around the floor, but soon the darkness in her mood would set back and she would withdraw again. I have an image that stays in my mind of her little bare head on the hospital pillow and large tears bubbling around her eyes as she wailed that there "is nothing to do in the hospital except lie in bed".

She's watched countless movies over and over, has exhausted all the toys in the playroom (which seem to have been procured from a pre-school), and has filled hundreds of pages of drawings. There is no wi-fi in the hospital, so her attempts at online movie viewing, Webkinz, and online games are just frustrating for her with our cell-phone modem connection.

The doctor suggested a short run of anti-depressants. I suggested (at length and to several case workers and doctors) that we try to make the hospital less depressing! I have loads of ideas. From food to social opportunities to room and playroom setup. This is the only Kaiser hospital for hundreds of miles that treats pediatric cancer- but yet the pediatric floor is set up more for quick stays- tonsillitis, surgeries, broken bones, that sort of thing. There is no real infrastructure for kids who are there a lot. The food never changes, there are no special events, special visitors, internet, etc. We are most often housed with those quick stay folks who have no idea about chemotherapy.

But I digress! Sorry!

Millie is home now and doing pretty well. Her mood perked up a lot just seeing her daddy and brother. She is also swimming regularly at our friends' pool across the street. You wouldn't believe how happy she is in the water. A joy to behold! She giggles and dives and swims across the pool over and over. With her swim cap and goggles, she looks just like any other kid. The swimming is really helping her leg as well- she has built the muscles back around her knee and puts full weight on the leg. She still has dropfoot, but is managing well.

Friday Update

Just a quick update to let you know that we had 2 medical interference days this week. Thursday I was unable to draw blood through Millie's broviac tubes-so we had to haul down to the Oakland clinic for a special drug to clear the lines. On our drive home I got the call that Millie's hemoglobin was hovering around 7 and she had to have a blood transfusion in Santa Rosa on Friday.

Blood transfusions are an all-day affair. You'd think they could call the blood bank, have a pint of A positive delivered, and the infusion done within a couple of hours.

In reality, Millie's blood sample must be "type and cross"'d each time she needs a transfusion. I have no idea what would change every time- as she is always A+, but I am not a medical professional. This checking takes at least an hour, and then the order goes in for the blood which takes another 2 hours. Then the transfusion goes through at about 3.5 hours. Of course, before the transfusion she is given benedryl and tylenol to help against a reaction to the blood. This takes another 30 minutes.

We had an excellent nurse in Santa Rosa who fussed over us in all our grumpiness. Her name is Debbie and she is another shining light we've found on our journey. One more little light we found yesterday was that directly outside the treatment room, where we spent seven hours, hung a pastel work by Millie's Oma- Andrea Way! I call instances like this "wildflowers of serendipity" - little surprises that remind you you are on the right path.

Thursday and Friday this week we spent a lot of time on the road and in medical offices- at a time when Millie was severely neutropenic. We were both pretty fussy about the whole thing, and look forward to a better weekend.

I thought I'd post a picture of Griffin this time. Here he is with a model of a California Mission that he made with Oma over the last month.

Mother's Day

At 6:00am on Mother's Day I sleepily asked our stellar nightnurse, Olga, "Can you hepblock her now?". Millie had finished chemo and the follow up rescue drugs by midnight, and in theory should be able to be unhooked from the IV and ready to go home. Cycle 8 was complete after 5 nights of ifosfamade and etoposide in a shared room during a busy week in the pediward. Olga obliged and Millie was able to wake up naturally and untethered.

The 6 days were tough- the physical therapy team visited Millie each day and tried to get her to exercise her leg and foot with limited success. Millie was very sensitive and reluctant to try on the braces they offered. I actually haven't seen her cry that much throughout her entire treatment. By Sunday we had agreed to put a half cast back on later in the week to alleviate her intense fear of the weakness and sensitivity in her leg.

After she had been unhooked from the IV, we found out Millie's hemoglobin was low at 8. Luckily, we avoided a transfusion and were able to be packed up and ready to go when Brian's mom (Oma) and Griffin arrived to drive us home.

As usual after such a stay, Millie and I basically collapsed at home, and I dozed while cuddled with her in front of a movie. The evening was wonderful, with Oma and Opa coming back with a mess of fried chicken and a mother's day dinner that couldn't be beat. I slept, as if comatose, in my own bed.

The option of putting a half cast back on her leg gave Millie some kind of courage, as by Monday she was attempting to walk a few steps without crutches.

This is a truly amazing little girl we are dealing with. By Wednesday she has abandoned the crutches all together and is walking up and down stairs and throughout the house! She walks tentitively, and with a dropfoot gait, but is walking!

Her Granny and Grandad took her today to a park where she actually climbed up the play equipment and worked hard and exercising her foot.

We're all so proud of her.

Casting Off

Millie's cast was taken off last Tuesday. This is another case where we looked forward to the milestone without realizing the difficulties involved. Without the support of the cast, Millie is no longer able to get around easily. She must use her crutches constantly, and is unable to walk. The muscles in her leg have atrophied (and those that had connected to her now non-existent upper fibula have to recover from being surgically reattached to her tibia)- and the important peroneal nerve that ran along the tumor site will take months to repair itself after the bruising from surgery. Because of this she has a condition called dropfoot. The dropfoot combined with the weak leg muscles makes it very difficult for her to take a step.

But, as she is Millie, she is trying. Every day she tries to put more weight on her foot, to stand on both legs, and to attempt stepping while holding on to our hands. Each step goes like this: She gingerly places her right foot flat on the floor in front of her while holding on tightly to one of us. Then she hops quickly with her left foot to meet up with the right. The force of the hop and added weight on her weak right leg causes the right knee to collapse down and inward until the other foot lands and she can straighten herself up.

She tries, though! She is trying so hard to strengthen her muscles. We'll see a physical therapist and a neurologist in the hospital this week (I guess I'll be meeting that same neurologist again who fought me about the feeding tube). We'll get some good exercises to do- and perhaps some kind of foot brace she can wear so that she can get around better.

We will be in the hospital 6 days this week- cycle 8 of chemo. I heard from the nurse that the pediatric ward is packed- so we may have difficulty getting a bed- and surely will be in a 3-family room. I am sure everyone there is just like us- worn out, impatient, and just wanting our old lives back.