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.

More vomiting

I wanted to continue asking for prayers for Maggie and her nausea and vomiting. She has vomited 3 times today, so we are not out of the clear though she is no longer taking chemo. We hope that if it is the chemo causing this, it will rid her system quickly and she will begin to feel better. Maggie definitely was not as jovial as she normally is, so it is probably safe to say that she is not quite feeling well.



We'll keep you posted, but please continue to pray for quick healing. Thanks-

Clinic visit

We visited the clinic today for a scheduled low dose chemo infusion. Within that visit we found out that Maggie had indeed lost all of her weight from the previous week. She is back down to 21 lbs. and 4 oz. At least she hasn't gone down further. We kind of expected that as she hasn't eaten anything in a week and has vomited about once a day. I would be lying to not say that I was a bit down that we are starting all over again.

We also found out today after labs that Maggie's counts were too low to have her scheduled chemo. Her ANC is supposed to be at least 500 and Maggie's was at 250 (she has been up as high as 4,000 in the last few weeks, if you recall). This number means that we are prisoners to our house once again as she is more susceptible to infection. Her platelets were also lower at 60,000 versus the required number of 75,000. Based on these numbers, Dr. French decided to give Maggie a break from all chemo drugs, including 6-MP (her daily oral chemo), in hopes that it will boost her counts back up. We didn't expect that. So, even though the chemo is a low dose, it tends to work cumulatively--over time it takes a toll. So her counts are down and we have to be careful and cautious.

We discussed with him the fact that Maggie is still vomiting about once a day. This has been going on for a week now. He was not sure the cause is, but was leaning towards the chemo drugs (specifically 6-MP) as the culprit. Most of the viruses he said were about 24-48 hours and since Maggie has been acting this way for a week, it might not be a virus. She also has been vomiting at random times, like when she takes her anti-nausea medicine, sometimes at night when she has been nursing before bed, and when food is offered to her. He compared Maggie's nausea to a pregnant woman who gets food aversions for no reason at all, or gets sick at random times. He said that sometimes this just happens at different times during treatments. Further, we may or may not get much more clarity on the situation. We just have to wait. So now we are hoping that the "drama" will simmer down a bit in our household. We have been going through a lot of clothes and bed sheets this past week.

My nature to plan things was again disappointed today by the halt in Maggie's chemo protocol. I realize the end result of Maggie being healed is most important to us, but I can't help but think this pushes back her treatment one more week, pushes back her broviac replacement for a port, pushes back her taking baths like a "normal" child, pushes back our chances for a vacation, pushes back our last in-patient chemo stay one more week... It's one more week that we have to live in our own version of "hell" (pardon my terms).

With that, we ask for prayers that Maggie's nausea will go away and she will again regain her appetite. We pray that Maggie will not get any infections with her low counts and that her counts will recover quickly. We pray that Maggie will be able to continue her scheduled chemo visits without anymore interruptions. And most importantly we pray that Maggie will be completely healed of cancer.

Virus...

Well, it appears that Maggie might in fact have a virus. We called Dr. French today, her oncologist, to find out what he thought or what we should do. He didn't think her nausea was related to her chemo, but instead a virus. He suggested continuing Zofran 3 times a day and actually upped her dose. We also found out that Maggie's cousin has similar symptoms as Maggie, which makes it seem more like a virus as well.

Along with some nausea, she is experiencing some diarrhea. She has managed to nurse a bit more today, but still is not too interested in solid food. She experimented with some pizza this evening by putting it up to her mouth, though she ended up throwing it to the floor pretty immediately afterwards.

Hopefully this will all pass very soon and she will feel better once again. Thank you for your continued prayers.