No fun.

First--we are home (as of 7:00 PM tonight), Maggie is done with this week's chemo, and she's still crawling around and having some fun. Those are good things.

But, Maggie had some rough stretches too--she's still vomiting some, but not as much as yesterday. I wish that was the end of the bad news, but Whitney is sick now. She started feeling ill this afternoon at the hospital and eventually, she started vomiting, too. She's been feeling horrible and is going back and forth to the bathroom over and over. She's just very nauseous. At least now we're home. She was so anxious to be home once she got sick. But we had to wait for all of Maggie's medicines to finish, wait for our meds at the pharmacy, and then they discharged us.

Obviously, we don't want Maggie to catch whatever Whitney has, so Whitney has been wearing a mask. Maggie's counts will bottom out in about a week. Whitney was extremely generous and suffered through a couple of feedings for Maggie this evening, but she's just suffering right now. We're going to try to get through the night with Whitney having her room to herself. More than anything, it is so hard to watch her--it looks like a really nasty bug.

Please pray for a night of rest and quick recovery for my ladies.

Goodnight.

Update

It's time to give a quick update.  The last few days here in the hospital have been fine.  We have been coming and going for work, but one of us is always here with Maggie, of course.  I didn't update Tuesday or Wednesday because I really didn't have much to say.  Maggie received her chemo, played and had fun in the room during the day, then we pushed Maggie around in her car (with the IV pole rolling along with us) in the evenings.  Things went quite well.

Then...

This morning (Thursday) Maggie started to throw up, quite a few times actually, when she woke up.  It was tough to watch, though she seemed to be pretty cheerful in between heaves.  The doctors gave her Benadryl(which didn't quite do the job) before adding Ativan as well.  Both are anti-nausea drugs that tend to cause drowsiness as well.  Maggie fought that for a while, but ended up falling asleep around 1 and didn't wake up for 3 hours. She looked pretty loopy when she was awake for a while there.  But she didn't do badly through most of the afternoon/evening.  

Unfortunately, it started again tonight--similar to this morning.  Repeated throw ups with cheeriness in between.  We're a bit surprised by all of this as Maggie has handled these chemo drugs without incident before.  But, this is how it goes.  The doctor thought that she could have this nausea for 3 or 4 more days.  Let's hope that's not the case.

We're probably going home tomorrow--she's had chemo for 4 days now, and will wrap it up in the afternoon (Friday).  Assuming Maggie gets cleared to go after that, we'll go home in the evening with anti-nausea drugs at the ready.  

Inpatient

We were admitted this morning after a fairly long wait checking Maggie's counts. Maggie just barely made her counts, which we were happy about. I spent yesterday cooking 2 casseroles and packing for a week and I really didn't want to go back home and have to do it again later in the week. Plus, I guess I feel the sooner we can get this over with, the sooner we can move on with our life.

We were pleasantly surprised to find out today that Maggie was going to go catheter-free. Dr. Dole, another oncologist decided that it would be better for her to just get frequent diaper changes, and frequent they have been. Andy has been changing diapers about every half hour, if not more.

Maggie received her first doses of the chemo drugs VP-16 and Cytoxan. She will receive 4 more days of these drugs before we can go home. I believe our scheduled time of departure will hopefully be Friday, as long as there are no complications.

My fear with Maggie's new found skill of crawling is that she will again regress being in the hospital. We are making it a point to put Maggie on the floor to crawl around while playing with toys and reading books. She was able to continue crawling today, so that's a good start. I think it also helps that she doesn't have a catheter causing her discomfort while moving and sitting.

Please pray for Maggie especially this week. Pray that the week of chemo goes by without any problems. Pray that Maggie stays infection-free and that she doesn't get sick from the chemo. Please pray especially hard that Maggie will remain fever-free this week as well. In the past, these heavy doses of chemo have caused her body to respond by fevering. This has caused Maggie great pain and discomfort, as well as a possibly longer stay in the hospital.

Thanks-

Crawling!

Maggie took us by surprise today by crawling across the living room rug. She's been up on her knees for quite some time, but always slides to her belly when she wants to move. We are so happy for her! Yeah Maggie!

Back on Track

We enjoyed a rather uneventful clinic visit this morning--and a good report from Dr. French.  Maggie has appeared to be more comfortable (no visible gagging, etc.) and we were encouraged to continue giving her an extra dose of Prevacid per day.  Stick with what works, I guess.  Maggie's counts are back up and in great shape so we are back on the chemo-train again.  Maggie had a low dose IV push of Methotrexate in the clinic and now our daily oral 6MP is on again.  

Due to Maggie's counts being decimated twice by this combination of drugs (once in December), she has gotten her chemo doses cut in half.  These drugs are intended to give her continual chemo coverage over time, they aren't supposed to take her down to a vulnerable level of immunity.  So the standard move is to reduce the dose and work back up to the full dose again eventually.  We're okay with this news, as it seems that there is no need to put her at too much risk when Maggie is doing well otherwise.  Of course there's always the give and take of stronger treatment (and a more aggressive fight of potential cancer cells) vs. "gentler" treatment that doesn't put Maggie at risk for serious infections.  Fortunately, childhood cancers and their treatments are very well researched and the protocol that Maggie is on is the best out there: it provides a nice mix of intense chemo and lighter "maintenance" chemo.  It's all mapped out for us and we're excited to be moving along as we are.

The other news is that we are likely going to have our next inpatient stay in a week for heavy doses of VP-16 and Cytoxan.  We thought our setback this past week would push things back on our schedule, but that's not the case.  We haven't stayed the night in the hospital since November, so we're pretty used to being home.  Hopefully it won't be too tough for Maggie.  From July to November we spent roughly 75 nights in the hospital as a family, and yet now we'll have to get acclimated again.  Who would have thought we'd have so much time at home over the past few months?  Once this one is done we'll be down to just ONE more scheduled inpatient stay, though there is always potential for extra stays due to fevers or complications.  We'll hope to avoid those.  In some ways, it will be nice to see the staff at the hospital again--they were very important people to us during the whirlwind of a most troubling time, the most difficult of our lives.  They have been good to us.  Maggie will get to get loved on by her nurses again.  

It's a tough balance for us as we look ahead and yet try to stay present-focused.  But we're happy today with how Maggie's doing.  We continue to fall in love with her more each day.  

We hope you all are well and are enjoying your families and loved ones.

Book savvy

Well, we have been vomit-free for over 24 hours.  Let's hope that this is the end of it.  Perhaps Dr. Andy figured it out, that perhaps indeed it might have been acid reflux and if that isn't the case, then it was great timing.  We gave Maggie Zofran this morning along with her Prevacid and we haven't given her anymore all day.  She has done well and even managed to eat a couple bites of pudding.  We will talk with Dr. French tomorrow to hear his take on things.

I wanted to post this picture of Maggie.  Of her waking hours, most of it is spent in her "princess" chair reading books.  She loves this chair and points to it as soon as we go into the living room.  Maggie also loves books and can listen to them being read all day if we would let her.  She is learning to point out different objects in pictures, specifically animals.  She loves to point out dogs, but is also becoming savvy in the knowledge of cows, kitties, pigs, and ducks, to name a few. It is a great distraction to have her point out animals when trying to give her medicine.  

Maggie is also learning that a cow says "moo" or as she says it "boo," and of course a dog goes "oof."  It is so fun to listen to Maggie practice her sounds and repeat what we've said.  It is even more fun to watch her understand what we are saying.  Her receptive language is growing larger everyday!  

I thought I'd share these personal tidbits about Maggie since our normal conversation consists of medical terms.  She is showing us everyday that though she's been through a lot of stuff that other children her age have not (let alone over half of us adults), she is still a developing child and is showing us how smart she really is.   

Update

Maggie had a fairly good day yesterday-- only spitting up a couple of times. However, last night (or rather early this morning) around 3:00 am, Maggie awoke and had a good vomiting. We are both trying so hard to figure out what is causing this nausea and vomiting. Andy is beginning to think that maybe it is her acid reflux and once her medicine wears off, she vomits. We might try doubling her dose of Prevacid today to see how she responds. Either way, something just isn't right because Maggie's been off chemo since Tuesday and I wouldn't think that she would continue to be showing signs of a virus if that is in fact what it was.

We did have a chance to go outside and get some fresh air yesterday since the weather was a bit warmer (upper 40's). We bundled Maggie up and took her for a stroller ride around the block. She enjoyed it, especially when we encountered dogs in the neighborhood. She loved it so much that when we came in, she was not happy and insisted on going back out by pointing to the door. We will be very happy when warm weather comes again and we can get her outside. She loves the outdoors and when her counts are low, it at least gets us out of the house some.

Our next step in treatment is going back into the clinic on Monday to check Maggie's counts and possibly get chemo. Though we don't expect to get answers from Dr. French as to the reason for her vomiting, hopefully he'll be able to recommend something else so that these episodes might stop.

Thank you for your continued prayers for Maggie. They are greatly appreciated.