Thanksgiving Weekend

We were able to spend Thanksgiving and the weekend with our family in Orrville. Maggie's ANC was only at 410 on Wednesday (normally under 500 they say she can't be out in public places). Seeing her counts continue to plummet scared me even more, but after receiving counseling by Maggie's nurse over the phone, she told us that we needed to make the trip and enjoy our time with family. Dr. French was not concerned about Maggie even though both Andy and I (or more so me) were very concerned about the big "R" word.

Maggie's spots have not healed yet and they continue to make me very worried. I am having a hard time with the threat of these spots and Maggie's lowered blood counts. I need to find a peace about it, but it has been very difficult for me. Andy has done a good job of putting things into perspective and has decided that the spots on Maggie's head are ringworm (and I pray that he is right). We go to Akron Children's Hospital to have Maggie's counts checked tomorrow and I hope that her ANC has recovered and her counts look great.

The reason for going to Akron Children's is that Maggie and I have stayed in Orrville at my parents while Andy has gone back to Dayton. I have wanted to get away from Dayton for awhile and things fell into place to allow us to stick around at my parents for a week. We cleared it with Maggie's doctors and were able to get the maximum amount of TPN for the 9 day trip. I am hoping that Maggie doesn't bring us any surprises so that we can stay all week and relax and visit with family and friends.

Please pray for Maggie, that the spots on her head are harmless. That her blood counts look great. And most importantly that she is completely healed of cancer. Please also pray that Andy and I will feel a peace and trust that God has everything in control.

Uneasy

Though we saw Dr. French yesterday and he told us that Maggie's spots on her head didn't look to be cancerous, it hasn't quite calmed our fears. We are still very worried, especially when looking at Maggie we can see these spots staring us back in the face. To be honest, I'm scared. I can't quite feel comforted by Dr. French as this is a very sensitive subject to us, since this was the sign of her diagnosis.

We go back and forth between thinking she has relapsed to saying she might be okay. We are just very uneasy about the whole situation-- to the point where I can't relax. I find it hard to concentrate on much else and I feel like Thanksgiving and our week after plans have been ruined. How can I enjoy myself when I am worried about Maggie relapsing?

The only thing that will put me at ease and let my mind rest is if these stupid spots just go away. I wake up each day hoping that they are gone, but not yet. And my eyes are doing tricks by making me think that they are changing in size, color, or increasing in numbers. I'm scared, really scared.

If behavior and demeanor meant anything in the grand scheme of things, Maggie would be as healthy as a horse. She's laughing, smiling, wanting to walk, wanting to play--things that we haven't seen her do in a long, long time, if ever. She's gaining weight. She's up to 23 lbs. 7 1/2 ounces. She's having the best time and the horrible thing is, it's hard for me to enjoy it with this scare.

Please pray for Maggie. Pray that she has not relapsed and that these spots are benign. Pray that Maggie has been healed of cancer. Please pray that we can have a peace of mind and trust that God is in control-- that his plan is for Maggie to survive.

To our knees

Well, we've had a rough stretch. In our last post, we stated that we were ready to be content (diarrhea and all)--knowing full well that winning Maggie's battle with cancer is the real fight. Several days into our content-filled bliss (Saturday night), Whitney noticed a series of faint spots on Maggie's forehead. Whitney and I were immediately stunned and floored (literally). We were scared to death and it knocked both of us to the ground. The spots looked different than what we saw last summer, but there were 3-4 of them and they were fairly close to where the previous ones once were.

We had an appointment today with Dr. French, so we had a rough time waiting a day and a half for some reassurance. We assumed that we wouldn't get much in terms of clarity by calling the on-call doc over the weekend. Much of the time since we first found them, we assumed that Maggie very possibly might have relapsed. Whitney's parents came down immediately to give us some company. We really appreciated that.

Ultimately, Dr. French decided that he wasn't concerned right now with what he saw. And, we are continuing to get coached-up by the nurses to find ways to relax. Maggie's blood counts were quite good, so we're trusting that Maggie is okay. It hasn't been easy though. If nothing else, we have been given lots of reminders lately that we can't take anything for granted.

Hopefully, Maggie's spots will go away soon and we can trust fully that her health is good. In the meantime, we would appreciate your prayers for Maggie's continued healing and for peace in our lives and minds.

Thanks

First, we should thank so many people for offering support in so many different ways. Whitney felt it was time for a raw and honest post last time, and it was good for us to do so. The response that followed was pretty amazing. Thanks to all who continue to be interested in our family's well-being.

Next, we should mention that we have been humbled of late in a number of ways. Most prominently, we are following a fellow infant Leukemia family that is being treated in Dayton and they are reporting some troubling news on their website. It sounds like they are going to have a long night tonight anticipating some test results with their doctor tomorrow. Say a prayer for Alivia. Also, Lincoln is another infant being treated at Dayton for ALL--he is close to moving to Cincinnati Children's for a bone marrow transplant following an apparent relapse. Nan is one of Maggie's friends who is recovering and bouncing back from a bone marrow transplant in Cincinnati. Ashley is another friend of Maggie's who is fighting following a relapse. Ally is in and out of Dayton Children's going through a challenging stage of her treatment. The families of Lydia as well as Liam are trying to live without their little ones. We have mentioned before that families that we've met who are fighting the same battle are especially important to us. I would like to think that we help and support each other (if only in spirit and via the internet) , and it is just so valuable to know that we're not alone. Of course we wish that none of us had to worry such adult-like worries about our children. Since so many of you are enthusiastic in your support of Maggie, please share your thoughts and concern with a few others. Please say a prayer for these children and families as well as the families in hospitals near you.

That being said, Maggie is pretty stable right now. Her diarrhea is significant, but her hydration is fairly good. She is sleeping a little bit better and--most significantly--she's a happier toddler on TPN. It's amazing to see what a basic level of nourishment will do. We did find out today that her urine cultures revealed traces of her UTI from last week. So, they started another round of antibiotics, this time a planned 7 days.

Maggie's diarrhea has been severe enough for so long that we sometimes get distracted from the worries of cancer. That's probably a good thing. We are trusting that for right now, we can handle diarrhea and will try to be more appreciative of what we have. For our sake, give your child or loved-one a hug and don't take good health for granted.

Lost

I have been avoiding posting lately due to my attitude. I'm not sure that those of you reading this want to hear the thoughts going through my head, but I have decided that it is time to post.

Steroid week is over and Maggie's behavior was quite good considering our past adventures with this drug. However, Maggie's diarrhea has continued to worsen. I do feel like all we ever talk about is poop, but really that is our life. That is all we talk about here in this house because that's all we do all day long-- clean up poop.

Anyways, yes, the diarrhea is outrageous right now. Actually, it just hasn't let up in the last month plus. Maggie's labs showed on Thursday that her potassium was down to 2.8. If she wasn't on TPN, we'd have been in the clinic getting a bolus of potassium, but instead they just changed the contents in her TPN bag to add more. I worry that it isn't enough though as Maggie has laid on me some tonight, which is what she has done in the past when it is low. But I guess we just have to wait and see what happens and assume that the TPN is going to take care of it (which I don't have high hopes.)

My attitude (or rather both of ours) has become quite bitter. I can only speak for myself, but I am ticked. I am mad that the TPN is supposed to be our "saving grace" and it hasn't done squat. Most of our day consists of Maggie telling us that she has to "poo." I lay her down to change her and there's nothing there. 8 out of 10 times we have false alarms, which makes me think that she is feeling stomach cramps, but you know it's coming because her belly sounds like a washing machine sloshing liquid around and making rumbling sounds. So, the times that we decide that it is a false alarm ends up proving us wrong and then we are cleaning diarrhea all over the place. Maggie had complete liquid diarrhea today in her high chair, so in the process of cleaning that up and getting Maggie a booster chair, she then had diarrhea in the booster chair. Our day consists of cleaning up diarrhea. It doesn't even phase us anymore, but I think each time it happens, our short fuse becomes even shorter.

Not to mention that nights are horrible as normally this is when the diarrhea increases, though I don't know how chronic diarrhea all day long can increase further. I will just get Maggie to sleep (and yes, I still walk her around) and as I lay her down, she poops. Then all of my efforts are wasted. Last night we went through 5 waterproof pads because our changing pad has been overworked. It cannot handle complete liquid as it just runs right down the sides. And those super absorbent diapers, not so absorbent as they advertise. I guess the diapers cannot deal with the sheer quantity and velocity of liquid streaming out her bottom. I also sleep with one ear listening for the shooting stream of liquid coming out so as to get it before it soaks the pad. I have found myself to not be as successful due to our failure in materials to do their jobs.

So, it feels as though all things are failing us, diapers, doctors, TPN, and even God. I have lost faith in God. I've been praying for 16 months, actually my whole life for my child, but especially these last 16 months and for this specific problem of diarrhea for 9 months, and I feel as though God doesn't care. He isn't doing a darn thing to help Maggie. Faith is easy when things are going good for you, but when you've been stuck in your own hell for as long as we have, it's literally impossible. Sure, I believe in God, but I am beginning to think that He doesn't care. Why else would He be putting us through this misery? To teach us something... I've learned a lot, but you know what, don't use my child as a lesson. To punish us for something of the past, our ancestors... I'll repent. I'm so sick and tired of screaming my prayers to God for healing of Maggie and not having any reprieve.

We are suffering. Our relationship with each other is on edge with each poop experience, our psyche is on the brink of hysteria, we are losing it. Sure, cancer is tough, but this diarrhea is killing us. We cannot deal with much more.

I don't know what to say. Please pray? But then again, that's what we've been doing and the diarrhea has only gotten worse. We have lost all hope, faith, and sanity.

Steroid week begins

Just a quick update, as free time is precious in this household--especially this week. Maggie had her smorgasbord of infusions yesterday, including a spinal tap with intrathecal chemo. We also learned, which I had a suspicion about, that Maggie has a urinary tract infection. So, we have made things a bit more challenging during her infusions as she is on an antibiotic through her port. The poor thing just can't get a break. I think she has had it for a month or more, but she never cried or showed signs other than heavier breathing as she urinated. Hopefully though, this problem will go away quickly.

Maggie's CBC (white count, etc.) looked good and her spinal fluid was clear, however, once again her bi-carb, that which measures hydration was considerable low. Maggie's diarrhea continued to be very bad on Sunday night and it showed through her electrolytes. I think the doctors are baffled as to why this might be continuing, considering she is on TPN. Her weight also measured at 20 lbs. 11 oz. on the Almost Home scale. If this is her true weight, she has lost a pound since Wednesday. However, after seeing the weight, Dr. Broxon asked us to go to the Hemonc clinic and weigh her on the scale she always gets weighed on. This weight ended up being 22 lbs. 5 oz., so hopefully this is her correct weight. If not, I am feeling even more hopeless than before.

With that, the steroid craze has officially began. Maggie has been crying for most of the evening. We were able to get her to bed a bit early tonight and hope maybe this will last the night. You never know what the nights/days might bring when on steroids.

It appears that it's going to be a long week. Please pray for Maggie-- that the side effects of steroids will not be bad.

No reprieve

We saw some progress in Maggie's stool within the first few days of TPN. I knew it was good when I wasn't waking up multiple times throughout the night to change her dirty diaper. However, yesterday evening took a turn for the worst and we ended up changing 15 diapers overnight. I was so mad, frustrated, and ticked at the world. This should not be happening, not on TPN anyway. The only thing we can think is that Maggie the oral Methotrexate Maggie got on Friday might have created this diarrhea. Unfortunately it hasn't let up today either. We will see what the night brings.

Please pray for us especially this week as Maggie has a spinal tomorrow and begins steroids. They will check Maggie's spinal fluid to make sure there isn't any cancer cells. Please pray that her fluid is clear and that she remains in remission. So often this diarrhea problem clouds the real reason why we are here and that is to cure Maggie of cancer. Pray also that Maggie will not have bad side effects to the steroids or Vincristine. Pray for a good week.

TPN

We started TPN last night and within an hour or more, Maggie was acting like a different person. I'm sure that it wasn't because of the TPN (it can't work that fast?), but something caused her to become happy and playful. It has continued yet today and I might even say she's been a bit ornery, which is so nice to see.

Andy had mentioned Maggie's thumbs and hands acting funny. My mind after seeing this began racing to all the places it shouldn't. However, yesterday after doing a blood test, they found that Maggie's calcium level was very low. We read that low calcium can create numbness and tingling in your hands and feet. So, we think this might have been the reason why she was acting this way. Thankfully in the evening her thumbs were back to normal, though today she is still a little low, but not dangerously low.

So, now, for the next 3-4 weeks, we will be carrying a bag with us wherever we go. To begin with, Maggie will be hooked up to 24 hour "feeds." By next week they will try to bring it down to 18 and then eventually only overnight. They will measure Maggie's weight, height, and her pre-albumin (a measurement of protein and your body's overall nutrition). When her pre-albumin has been above 20 for sometime (it is currently at 17) they will take her off.

I don't see this as a solution, but only a temporary treatment to bring her nutrition up. I have a feeling we will be dealing with diarrhea until the end of treatment. We need to just maintain her nutrition and hydration until that time. And though TPN can be harsh on the liver, we think it's the best option for her, as we can already see a difference in her attitude. Now hopefully we'll see Maggie start growing and the diarrhea subside.

Update

Hi everyone. Our energy is low tonight, so our update will be brief. Maggie is going to be put on TPN tomorrow (IV nutrition). We did this in June for 49 days and it plumped Maggie up and improved her diarrhea situation for a brief while. So, this will get her to the point where she'll be nourished better and she should put some weight back on. It is an inconvenience having her port accessed for an extended period, but it is the right thing to do. Dr. Mezoff guessed that she would stay on for 3-4 weeks, although last time it was longer than that.

Our question tonight is whether or not Maggie will be hospitalized for a couple days to get her started and to insure that she is getting a good mix of fluids, vitamins, and lipids. Dr. Mezoff thought that we would, but the Hemonc office sounded as though they may do this through homecare nurse visits.

We're not closer to identifying a cause for the diarrhea. The test results didn't show anything new and Dr. Mezoff is assuming that it is treatment related. We've been told to not bother with the gluten-free diet as Celiac disease has been ruled out several times. So, we'll continue to plan to deal with diarrhea until treatment ends in July. All we know is that it is worse now than it has ever been.(By the way, we are now 2/3 of the way through treatment, 16 months down, 8 more to go).

Our other concerns tonight are that Maggie is acting funny--she seems jumpy and less secure since yesterdays procedure. Also, she seemed to almost hyperventilate today and this evening she hasn't been using her thumbs--she tucks them under her palms and holds her hands awkwardly. We've seen it all now, I guess. We are assuming that it may be due to her new medication, but it would be really nice to see it be resolved soon.

We are all exhausted and drained. Tomorrow is a new day and it will bring some changes. We'll provide more details and explanations as soon as we can.

Worn Out

We survived the Upper GI with a small bowel follow through today. We were up extra early today after having several interruptions during the night for poop clean up. This left us all a bit more tired and Maggie especially tired given the amount of crying she did today.

As far as the procedure is concerned, it was quite difficult on the both of us. It is very hard to not be able to soothe my crying child. And just to clarify, this isn't a mad crying, but a scared crying. Maggie knows the x-ray room all too well, unfortunately, and as soon as we entered the room she started crying. When told she would be drinking chocolate milk (they put nesquik in the barium) she was very excited, but then they made her drink it lying down with a huge machine over top of her. This didn't end up working, for obvious reasons, and she was forced to drink it with a syringe.

The procedure then had us waiting for 30 minutes to an hour at a time before they did the next x-ray. During this time I had to force her to drink the rest of the concoction with a syringe AND get her finger pricked for a lab draw to see what her electrolytes looked like. If someone had a bad day today, it was definitely Maggie. She had over 4 x-rays and we waited 3 hours and 25 minutes before the barium finally finished through the small bowel. They say normally it takes about 1-3 hours. We assumed Maggie would be fast considering how quickly food passes through her body, but nope, like I've said before, nothing is easy with us.

Maggie did very well considering, however, the rest of the day she was much more irritable and jumpy. I have noticed she trusts things much less than before (if you can believe that), she whimpered some in her sleep during her nap, and of course she is just as needy. I am pretty upset by the whole thing; forcing my child to drink something disgusting, forcing her to lay down on her belly while holding her down, forcing her to take medicine that tastes bad, forcing, forcing, forcing. I shouldn't have to do this and she shouldn't have to be going through this. Must I say again, it's not fair.

Our next GI adventure starts tomorrow during her scheduled appointment in Cincinnati. We will see what the plan is-- and there better be a plan. Maggie's diarrhea has gotten increasingly worse. Friday night I was up 8 times changing her diaper, Saturday 6 times, and last night 3 times. I guess you can say it's getting better, but last night's required a whole bedding change. These nightly changes are on top of going 4-8 times during the day. Something has made things worse for her and I'm not exactly sure what. We decided Saturday that maybe we would put it upon ourselves to try a gluten-free diet and see if that creates any change. I've been told it might take some time, which I guess is good since there has been no change.

But I guess on the bright side, Maggie's labs were not horrible today, surprisingly so. They did increase her new medicine a teaspoon because her bi-carb is still low at 18.6 (normal is 20 and above). This medicine however is very bad tasting and Maggie cannot get it down her without almost heaving. There's a lot of it too, 6 teaspoons 3 times a day. That is a lot for a little girl, on top of taking so many other types of medicine throughout the day. Maggie's potassium was 4.1, which was quite a shock given our weekend potty experiences. So, with the labs comes another finger prick on Thursday or Friday to see how she is doing. Another moment for me to force her to sit and endure pain.

On the bright side, we did get to go Trick-or-Treating on Saturday with Maggie's friend Jay. She was very quiet and shy, but she did manage to say "Tri" (for Trick-or-Treat) and "Tan" (for thank you) when we walked up to the houses. I ended up carrying her the whole time, which was quite a workout. My goal next year is to have Maggie walking on her own and to have her dressed in a new costume (which means that she will have gained weight and grown). She was once again a bumblebee, which she liked, but was not all too fond of the hat with antennae.

I will say that I have grown tired of people commenting on how tired she looks. Even after a nap she looks tired. That's what chemotherapy and steroids do to you, they make you look tired. I often feel when people say that, that they are judging me for having Maggie out when she should be at home in bed taking a nap. I just smile and say, "yep," but what I really want to say is, "She has cancer. There's a reason why she's tired." I look forward to the day that she feels good. I also look forward to the day that I don't have to correct people by telling them she's a girl (I guess girls can't have short hair). I know, I shouldn't worry about it, but after awhile, it just gets to me. That's kind of what this disease is doing to me...getting to me.