No chemo this week. . .

No chemo this week because Lauren's ANC is only 100. The preliminary report was 400, so her port was deaccessed and her IV antibiotics stopped. We'll have to wait until tomorrow AM to see if we need to do anything else, she looks great so I doubt we will have to restart the antibiotics but we'll find out. It would have been the 6th week of chemotherapy, I guess there's always next week;) Hopefully her ANC rises enough by then. On a positive note her abdominal ultrasound showed no residual cancer. Her spleen was a bit enlarged and her remaining kidney had grown some, so they will have to be followed with her regular ultrasounds. Tomorrow is Brady's birthday and he is super excited so more to come. . .

Home Again!

Much to our surprise they let Lauren go home tonight! She has been fever free for 24 hrs now. Unfortunately I had to work tonight and so I only saw her for ~30 minutes before going back to PCMC. Home health came and taught Brock how to care for her port and give her meds late tonight. She has to continue her IV antibiotic 3x/day until her ANC is >500, so it could take a while, but time will tell. Lab draws on Mondays and Thursdays to assess her cell count to determine when we can stop the antibiotics and if she can get 1 of her chemotherapy drugs (she can still get the Vincristine every week because it is not count dependant, unless she develops a neuropathy in her hands/feet. . .but so far, so good). She will continue her Chemotherapy appointments Wednesdays and her Septra Mon/Tues for prophylaxis making it a busy week! I am anxious to have her 1st post-op/post-chemotherapy imaging this week. I think it will be good. . .no additional cancer/tumor or further organ involvement but can't wait to find out!

Yikes!

Sheesh we can't seem to get enough of PCMC these days! Unfortunately Lauren came down with a fever late last night/early AM today and was admitted to the ICS Unit (Immunocompromised Services Unit) after another ER visit. It was of course crazy since I was working a night shift at LDSH and Brock was at home with all 3 kids. Fortunately my mom could come to the rescue at the wee morning hours (~2 AM). Almost no sleep last night and just an hour of catch up today = a couple exhausted people! Hopefully she will sleep tonight.

Well, she had a low grade fever (>100 <101) for an hour so of course we did the 'usual' and called the on-call oncologist which meant a trip to the ER and an admission due to the absence of neutrophils (ANC of 0). After a little trauma in the ER. . .4 pokes just to access her central line, she now thinks everyone who comes in the room is going to poke her (of course right after she finally is doing better with the accessing we have to have a traumatic experience. . .go figure). She has been sleepy on and off (her usual) but keeps having low-mid grade fevers which means we may be here for a little while. So far her cultures are negative (<24 hrs) and her appetite is improved. She gets IV antibiotics and may eventually go home on IV antibiotics once her ANC improves and she is fever free for 24-48 hrs, so who knows how long that will take. . .we are hoping for the weekend, but we will have to see how things go!

She feels good off and on, and managed to sleep for a chunk of time this afternoon which means she is having a hard time winding down tonight. Hopefully she will stop chatting and feel sleepy soon (but at least she is feeling better at the moment)!

Bring on the hats. . .and NO SICK people PLEASE!

Well it's not as apparent in the pictures but Lauren has been losing her hair like crazy! Brock said she looked like Benjamin Button (AKA Brad Pitt) and she totally did. We finally gave in and convinced her to let us shave it off (of course to convince her I told her she could do it herself . . .with a little help;) Her face was like sure terror when she first saw her reflection in the mirror, but I told her she looked pretty ("pretty silly head" was her response after starring for a minute). She honestly looks better and less sickly with it shaved, plus now no more hair balls in the bed when she wakes up!

She finished her 5th dose/week of Chemo today. She has been such a trooper and is doing better taking her antibiotic and with the accessing of her port. She cried a little today, but overall did very good. I was however, shocked to see her ANC dropped to 0, YES ZERO! Now the scary, very immunosuppressed time starts. Hopefully no more fevers or sickness because that will buy her a 48-hour hospital stay minimum:( On a brighter note, her Hct didn't drop as much and is now 26.9% not yet the 25% needed to transfuse. She is still more tired then normal (unless she has visitors. . .she always has more spunk then), frequently asks to be held and lays down a lot (I'm sure a combination of the anemia and yucky chemo).


It was a day of Dr. visits today, not only for Lauren but well check ups for Brady and Courtney too! Well, Brady is still a big boy (no surprise). He weighed in at 48.5 pounds (90%tile) and 45 1/4 inches tall (91%tile). He has been at the top of the growth charts since he was 2 months old (Lauren was too for that matter). Brady was a champ at his shots. He only said "ouch" after them and then said "I was just kidding" because his Pediatrician was teasing him earlier when he checked his reflexes and he kept saying "ouch" then too teasingly.

Courtney is our only 'shorty' at 26.5 inches she is only 70 percentile (vs the usual 90%tile) and already 20 pounds 7 ounces (98%tile). . .almost ready to ditch the infant car seat and change to the convertible. She is dong really good sitting up by herself, but no rolling yet (that would require laying down more and with 2 other busy kids running around she doesn't get much of that). They both got a few less vaccines because of Lauren's immunosuppression. They will have to play catch up later this winter and get the other live attenuated ones.

Hair. . .hair. . .everywhere!

Lauren has started to lose her hair the past few days, and now it's even noticeable! It feels like we have a dog. Anything and EVERYthing she is by/lays on gets hair on it. She doesn't seem too upset about it yet, since we have been talking about it for weeks. She knows her 'special medicine' makes her hair come out.

At her appointment yesterday, her Hct was down to 28%. Her oncologist thinks she will likely need a blood transfusion on her June 23rd appt. where she gets both drugs again AND an ultrasound, but we will have to see what her Hct is then. The ANC is now 700 by automated differential. . .the oncologist thinks this is actually higher, but we need to be cautious. They say once it's 500 she will need to wear masks, continue to avoid sick people, and stay at home as much as possible. It will be interesting to see if the ANC continues to decline.

We have actually been at Snowbird this week and just came down for chemo. It's been fun to be there with my family and just to get away from life and relax! Brady has been having a great time with Grandma Venita and his cousins.

Week 3

Wednesday was Lauren's 3rd week of chemo. She did pretty well, except for the port accessing (she hates it!). She still doesn't have an appetite. The days are long, full of trying to get her to eat and drink something, and to take her medicine. Her cell counts are still dropping, the ANC is only 800 (500 is when they get really concerned) and Hct is now 30%, which makes her quite pale and a little tired too. She actually slept last night, which was nice for a change (Courtney did too!). The LOH test was negative! Now only 15 weeks of chemo left, assuming she won't have to have any postponed due to a low ANC.

I thought I better post some pictures too. . .

Brady and Courtney on her first real food day!

I took Lauren and Courtney to see the Cinderella ballet with Grandma Jenny. Cousin Hannah was one of the performers.

The family (Brady, dad, Courtney, mom, & Lauren-pre hair cut) at preschool graduation (no one really cooperated for the picture except me and Brock)

The graduating boy.

Courtney & Lauren-post hair cut (I have to admit I wanted to bawl when she got her hair cut. She did too, that night after she saw it for the 2nd time. It took me a little to get use to it, but now I like it. We did it so that it's not so drastic when it falls out. It has started to fall out a little this week, you can see the fine baby hairs on her shirt and mine when I hold her.

Brock & Grandma Jenny.

Grandma Venita and Courtney came too!

"Handsome man" (the little nickname I call Brady).