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.

Updated prayer request

Thank you all for your prayers. Maggie's temp has remained around 99 degrees today. Hopefully it'll remain there and not go up. Maggie has yet to regain her appetite. She has refused most solid foods today, including ice cream (one that is rarely refused). She has not been nursing much at all either. Whenever items of food are put in front of her she will gag.

This evening, Maggie finally caved in and nursed. She awoke from nursing and ended up throwing up all of her milk. After throwing up, she began jabbering and acting like her old self. So thankfully, after the moment, it doesn't appear to be affecting her.

I worry that Maggie isn't getting enough liquids and will end up dehydrating. She appears to be quite nauseous. Whether this is from chemo or from a virus, we don't know. We plan on calling the clinic tomorrow to see what they think. We have given her 2 doses of Zofran today (a nausea medicine), however it doesn't appear to be doing the trick.

Please pray for Maggie that her nausea and whatever might be causing it will go away. We were so happy last week to see our little girl eating food and being adventurous by trying new foods. Now she is back to her old self--sealed lips.

It is so hard to see her feeling this way. We feel so helpless. It angers me that a little child has to go through something like this. We are so tired of watching our child suffer. Please continue to pray for our little girl.

Quick prayer

This early morning Maggie woke up with a low-grade fever.  It's highest was at 100.2 degrees at the hospital before she had her RSV shots today.  Please pray that it won't get any higher and that it will be able to go down by itself without any problems.  Currently it's around 99.1.  Though this is higher than her normal temp, it's not bad.  I get very worried when it elevates because it could mean a number of different things-- virus, bacteria, reaction to chemo, teething...  

Yesterday Maggie didn't eat very well and ended up getting sick 3 times.  She hasn't been sick today, but her appetite isn't where it used to be.  This could very possibly be a reaction to the low dose chemo she received on Monday.  Please pray that she doesn't get a fever and that she will remain healthy.  Maggie's behavior is normal-- talking like crazy and playing, so it doesn't appear to be affecting her too much, just affecting her mommy.  

Thanks so much!

Clinic Visit

We went to the clinic this afternoon to check Maggie's counts to see if she could get her low dose Methotrexate chemo.  She passed with her counts and along with her low dose chemo she began 6-MP again.  This oral chemo drug is given to Maggie in the evenings and she is not allowed to eat much of anything, especially milk products for 3 hours.  Tonight went okay, so hopefully it'll continue to go well.  Most children take this drug before bed, but with Maggie nursing at night, it doesn't work as well.  

Another surprise at the clinic was Maggie's weight.  On Thursday she weighed 22 lbs. 4 oz.  Today she weighed 23 lbs. 4 oz.  So, in one week, Maggie has gained 2 pounds.  We are thrilled--yeah for ice cream and pudding!  Maggie is actually beginning to take more food and act interested.  She really likes peas and is beginning to take some oatmeal and scrambled eggs.  We get so excited when we see her eating and all of our efforts are paying off.  

Some other new things Maggie is doing is when asked what the doggie says, she responds "woof!"  She also managed to say "mama" this week, thought she has temporarily forgotten today.  After naps Maggie has also been found sitting up in bed to greet us.  She is becoming more mobile (still no crawling, but there is interest of getting on her hands and knees and she scoots backwards).  Oh well, all in time she has come to show us.  When she does new things, she really out-does her self (like breaking 3 teeth in one week).  So we will wait for the time that she decides that being sedentary is no longer all that fun.

Thank you for your continued prayers.  Continue to pray for complete healing of Maggie's body and no complications or side-effects to treatment.  

Wait/Weight

I again apologize for the delay in posting.  During the last week and a half we have experienced steroids and visited the clinic/hospital 4 times.  All is well-- no worries, mainly blood count check-ups.  

Maggie on steroids this time around was A LOT better.  We were preparing for the worst and were pleasantly surprised.  Maggie didn't moan and cry the entire time, rather she remained her happy self with a few bouts of angry screaming once and awhile.  We wised up this time and gave Maggie a double dose of antacid medicine (Thanks to Karen Cooley!), as we think last month she was having reflux, which caused her some discomfort.  We also have gotten Maggie to eat some solid foods finally.  Her favorites consist of ice cream, pudding, pretzels, dill dip, ranch dip (she enjoys dipping french fries and potato chips) and baby food peaches.  Her belly being full I also think help this time around.  

The one area that was affected and still remains affected is her sleeping patterns.  Maggie stopped taking naps New Year's Day and began taking them again on Monday.  Maggie still continues to want to nurse throughout her naps and during the night.  Several nights this week she has nursed basically through the night, last night specifically waking up about every 20-30 minutes.  I guess if I have to sacrifice sleep in order to have my happy baby, I will do so.  But I will be honest, I'm ready to wean Maggie to whole milk so that I might begin sleeping once again. Maggie turned 15 months today, so I really haven't slept through the night in 15 months and the last 6 months I think I've averaged about 4-5 hours a night (and that's a good night).  

Throughout the last week we have been visiting the clinic to get Maggie's platelet count checked.  It has gradually been getting lower.  Today we went in planning to get an infusion of low dose Methotrexate and and IVIG (an immune supporting antibody).  In order to get LD Methotrexate, Maggie's counts had to be at a certain number, specifically her platelets and ANC.  Her ANC was at 3,500 (over 90% of her white count consisted of her ANC) and her platelets were 15,000.  In order to start chemo, her platelets needed to be at 75,000.  So, we were postponed.  Instead, Maggie received "the works."  She received an IVIG, platelet, and blood 

transfusion.  We ended up being in the clinic 6 1/2 hours waiting for all of Maggie's transfusions to be completed.  

The final little surprise and reason for the title of this post, was Maggie's weight.  On Monday when we were in the clinic, Maggie weighed 21 lbs. 4 oz.  Today, 3 days later, Maggie weighed 22 lbs. 4 oz.  Maggie gained a whole pound!  This is exciting because of all the problems we have had in Maggie's food intake and little weight gain.  I guess the pudding and ice cream are doing the trick.  Hopefully she will continue to become more interested in different types of food, preferably healthy ones.  

Our plans for the future consist of going back into the clinic Monday to determine if Maggie's counts are high enough that she might receive chemo.  Until then, we will wait for her platelets to begin rejuvenating.  Continue to pray that Maggie will not get any infections or side effects to the weekly chemo treatments.