Still not eating

It's now been about ten days since Mina Brigitta has had much to eat. It's beginning to get a bit worrisome. The nutritionist finally showed her face today -- didn't offer much, though. I'm really hoping our girl will start eating again as soon as she feels better from the chemo. She was interested in feeding me today, but didn't want to eat anything herself. No wonder, since she vomited again at about 11:30 tonight. In other respects, she's very much herself again, so I'm hoping tomorrow will be the day she starts eating again.

Last Dose of Chemo Today

Kind of a special day, though I'm not sure whether to really celebrate or not -- hopefully it did the trick and she'll be back in remission when they check her bone marrow in a few weeks. The good news is she should start feeling better in the next few days. She still hasn't eaten much in the last 10 days, and probably won't tomorrow either since she was still vomiting and whimpering today. Despite all that, she seems so much better than she did a few days ago, and the doctors note continued improvement in her breathing. They turned off the oxygen today, and now just check her levels every four hours.

We now have a fridge full of great food, thanks to our extremely generous friends, with another shipment due tomorrow. We're feeling pretty spoiled.

Another reason today was pretty special was because our friends Walt and Blaire had a baby yesterday up on the 15th floor, and we got to visit. Congratulations Walt and Blaire!

Pretty Quiet Day Today

Just like we like them. The only real news is that she's still shedding the RSV, which is more of a concern for the rest of the floor than for Mina Brigitta. She still feels horrible, but I can tell from the look in her eyes it's the chemo, not the virus. The only thing she ate or drank today was a few grapes, which came back up half an hour later. Thankfully tomorrow is the last day of chemo. Hopefully she'll have her normal appetite back by Wednesday. Then it's just a waiting game until her counts come back up, probably four weeks or so.

My baby's back!

Well, not quite all the way. She is on chemo, after all. But today she was more like herself than she's been in over a week. Fevers are just about gone, the red rash continues to subside, and she's maintaining acceptable oxygen levels with no assistance. Not that we don't still have issues -- it wasn't until vomiting at 5 PM that she really seemed like herself. But overall, things are looking just about as good as we could possibly have hoped a week ago.

Surgery was a success

M-B had surgery this morning to have a Broviac catheter placed. They had originally scheduled this for Saturday, but had put it off because of her breathing difficulties. This morning went really well, no troubles with breathing coming out of anesthesia. The line placement was a success as well. Let's just hope we can keep this one in good working order. She's a little sore still, but was feeling better today despite the surgery than she has in several days. Which tells you a lot about how awful she's been feeling. Otherwise, fevers are almost entirely gone, and the rash is looking like it was indeed bug bites. So, things are looker a lot brighter than they were a few days ago.

Fevers gone, woohoo! New rash, d'oh!

Mina Brigitta's fever broke this afternoon. After five days of fevers between 100 and 104, she broke into a sweat during an early afternoon nap and woke up with a temperature of 97. No sign of fevers since.

Unfortunately, she has a new rash on her legs, mostly, and a little on her arms. Little red dots. We were terrified it was going to be chicken pox, but the dermatologist thinks it looks more like bug bites. We don't have bugs in our house (except for those pesky Argentine ants we can't get rid of), but she did play in the sand on Wednesday. Apparently there are biting bugs in normal playground sand, and the bites occasionally show up like this on immuno-suppressed people. They're going to watch it over the next few days to see if anything changes. We're relieved, of course, but still a bit worried.

The other news is that M-B will have surgery tomorrow for a Broviac cathether placement. They had planned to do it Saturday, but put it off because of her RSV. Now that it appears to be clearing up, they feel safe in proceeding with the surgery. This means no food or drink until they bring her in, which might not be until late afternoon. Ugh. Not that she's had much interest in food, but she's been drinking plenty of juice. She'll wake up cranky and sore. On top of all that, Auntie Teri's leaving tomorrow. It's going to be a downer of a day.

Big improvement today!

Keri says Mina Brigitta was up playing with her brother and even ate a meal today, first one since Wednesday. And it looks like she's going to keep it down, too! Her fevers are just about gone today, though her breathing has yet to really improve. She's still getting a little bit of oxygen assistance, but is resting very comfortably now. She also got some blood last night and was actually pretty energetic in the evening. This raises the question of what in the heck we're going to do to keep her occupied for the next six months...

They also started the chemo last night at 1 AM. Keeping our fingers crossed that it will do its job on the bad cells.

Relapse

Dear Family and Friends:

First of all, I want to thank everyone for all of your thoughts and prayers for our Mina Brigitta over the past year. Our family recently observed the 1-year anniversary of Mina Brigitta’s diagnosis by spending the weekend at the Monterey Bay Aquarium, and spent a lot of time reflecting about the events of the past year and marveling again over the support we’ve received. We are eternally in your debt.

I am writing today because our Mina Brigitta is in need of your help more than ever. While we were enjoying the aquarium, we had no way of knowing that leukemia cells were once again growing in Mina Brigitta’s bone marrow. She developed a slight fever and cough last week, which caused our wonderful pediatrician to order a blood test. The counts came back alarmingly low, and the oncologists at UCSF asked us to come in for a bone marrow biopsy. Our worst fears were confirmed on Friday: Mina Brigitta’s cancer has relapsed.

Events moved quickly over the weekend. On Saturday they determined that the cause of her fever was respiratory syncytial virus, or RSV. This is a common virus that causes no trouble for most people, but Mina Brigitta’s leukemia has suppressed her immune system and made it much more difficult for her to fight off. She has been very ill with fevers of 104, difficulty breathing, and extreme nausea. The doctors have been frank with us that starting chemotherapy for relapsed AML with RSV is far from an ideal scenario. However, they don’t feel they can delay the treatment for the two weeks it would require for her system to clear the virus. The next week or so will be critical; she really needs to knock down the virus before the chemo wipes out her white blood cells. Luckily, she’s feeling much better today, playing, talking and even eating for the first time since last Thursday. Hopefully this means she’s turned a corner.

She will be treated again at the UCSF Medical Center. Her treatment will consist of one round of chemo, which will require a 5-6 week hospitalization, similar to last year, and then a bone marrow transplant. With any luck, we will have a 2005 that is similar to 2004: five or so months of treatment, with few complications, that achieves remission and gives us some hope that she can go on to live a normal life. Unfortunately, this time the odds won’t be in our favor. Still, if she can kick this virus, we feel there is plenty of reason to hope for a good outcome.

This has been pretty hard on Keri and me, as I’m sure you can imagine, but we’re getting over the initial shock and at least we know the routine at UCSF. It’s pretty tiring to think about going through this all over again, but with enough help from our family and friends I know we’ll be able to do it. Please keep our Mina Brigitta in your thoughts and prayers.

Arne (for Keri, Mina Brigitta, and Isaac)