Sacrifices

I learned about two years ago that being a parent means taking sacrifices. Sacrifices of time, sleep, physical appearance, food (as I have learned that Maggie eats first and I get the scraps), etc. But given the situation that we have been in the last 15 months, we have learned that we must also sacrifice our careers and goals. Andy did this last year by taking a year off of school to be home with Maggie while I worked. Yesterday, I decided it was my turn.

My job switched employers in July and I was awaiting for the job to begin once again. Originally, Andy and I thought that I would no longer work because of the job flexibility being lost, however, conveniently enough, they decided to contract the work out where I would be able to have my office at home. With this promise, we decided that I would work evenings and weekends and then have someone watch Maggie occasionally when I had to work during the day.

All was in place until yesterday the employer changed their mind. They wanted me sitting in an office for 8 hours a day. Anyone who knows our situation and dealing with a child with cancer knows this isn't feasibly possible. A child with cancer has a compromised immune system where putting them in child care would mean an automatic ticket to several days in the hospital dealing with fevers. Maggie also has not ever been around kids so regardless of her immune system, her body isn't used to dealing with other germs. On top of this, there are doctor visits, physical therapy sessions, and the much dreaded steroid week. These are all situations I see it necessary for me (or one of us) to be present.

So for this reason, Andy and I have decided that Maggie is much more important than financial security and we are willing to take the leap of faith (though I think we've been taking too many leaps lately and I'm getting a bit tired of it), to do what we think is right for our family. My would-have-been-employer told me last night after I had tried to negotiate the position and was declined, that she believes in miracles and if in 24 hours I could find child care for Maggie (which wasn't our main issue), that I should give her a call. I hope there are miracles, but not for the sake of my job, there are much bigger things to wish miracles upon, and she's sitting right beside me.

Cincinnati Children's

We got word on Friday that the wonderful nurses at Dayton Children's have pushed to get Maggie's GI appointment changed from October 30 to October 6. We are very happy and grateful for them doing this and hope that with this appointment we will get some answers and a treatment plan.

Maggie has been doing pretty well. She is still having her episodes, but they are not nearly as bad as they were last week. I think the potassium boost and being finished with steroids helped the situation.

In general, I'm just so tired of dealing with these issues. I would like to move on from this life of worry and enjoy every moment rather than wonder/worry about Maggie's conditions and whether or not she will be with us the rest of our life. I feel like someone has paused our life for these 2 years (and more) and we can't move on. I'm tired-- we're tired. We just want our baby girl to be healthy.

I want to thank Westminster Presbyterian Church in Dayton. We got a surprise call from one of their ministers, Kay Davis-Dudding, last week wanting to support us. We had been in contact with Kay while spending much of the summer in the hospital last year, but once we got home, we lost contact. Since Maggie got sick, we haven't been able to go to church often due to her counts and treatment (now that we are in maintenance, we do not attend church during steroid week for obvious reasons). Going to church has become a special occasion. Anyways, Kay called and asked if the deacons could bring us a meal once a week and we received our first one yesterday. It was so wonderful and we are so grateful to them for this ministry.

Being in Dayton without any family nearby, we often feel alone, but this call was much needed as we are dealing with so many transitions and complications with Maggie's disease. It gives us the strength to continue one more day. Thank you Kay for initiating this wonderful ministry.

Please pray for a little baby named Lincoln, who we met while in the hospital. Lincoln was diagnosed when he was about 3 months old with ALL and has just relapsed-- he is about 9 months. Again, this disease is absolutely relentless. There is no reason why children should have to go through this.

Light the Night

We have been talking for a long time about participating in the Leukemia and Lymphoma Societies "Light the Night"event in Kettering. Last year we heard about it, but we were in the hospital more than we were home a year ago, so we did not participate. However, this year, we would like to walk at this event for Maggie.

Though Maggie is not walking, we will be carrying her as we walk-- as we've been carrying her through this disease the last year plus. If you would like to walk with us or would like to donate to this event on behalf of Maggie, you can go to her team webpage: http://pages.lightthenight.org/soh/Dayton09/Maggie

We hope we will not be walking alone, though we know that we are also doing this last minute. But, guess that has been our motto this last year-- plan at the last minute because we never know what might come up.

As for Maggie, she is doing a bit better. This afternoon and evening she was very fussy and seemed like something was bothering her when we offered her food. She also was quite tired today as she took a nap over 2 hours (with a poop break in-between). Tonight she also went to bed early. Hopefully this is her body catching up on sleep that was missed last week and repairing itself from the harsh toxins that entered her body. Please continue to pray for Maggie and check out her site if you get a chance.

Relief

I took Maggie back into the hospital this morning for a scheduled lab draw to check her electrolytes. With this lab came a new finger poke, which Maggie was not too pleased with; however, the pink band-aid she received on her finger has been a hit. She has "talked"about it most of the day and held her finger up to admire her "pink" band-aid. What can I say, band-aids and stickers tend to heal all wounds. I am so glad that this does the trick as it reminds me she does have some normal 2 year old traits.

The labs measured her potassium and carbon dioxide levels, two levels that determine hydration. Her potassium went from 2.1 yesterday to 3.5 today-- a big jump and just below the normal range. Her CO2 level went from 10.9 to 18-- another level just shy of being within the normal range. So, Dr. French did not need to see Maggie further today for more hydration methods. Though she had about 6 diarrhea stools last night, her body managed to maintain her levels. After a stool when Maggie woke up this morning, we have not seen one since, which is a rarity in this house.

This evening Andy and I were able to get away and spend some time together. We were able to "escape" our life by watching a movie tonight on the big screen. The last time Andy and I did something alone together was in November of last year. Since Maggie has been born, we have had 3 "date" nights. We know that nurturing our relationship is very important, but with all that has been going on, we just have not had time to do so. We have read in books that often marriages struggle to survive when a child is diagnosed with cancer and I can totally understand why. The continual stress of a sick child wears on everyone involved, and for Andy and I, the last 7 months have been particularly hard on us as we have had to deal with Maggie's cancer AND diarrhea. So, it was much appreciated that we spent an evening together.

The last day and a half my parents have come to "rescue" us from the day-to-day stress. It is so hard to keep up with regular household chores, especially during steroid week. My parents were able to take a couple of days to come down, clean up the house, fix up things that had been neglected, and give us an opportunity to have a "date" night. In short, I think they gave us some of our sanity back. We are very grateful for their help and all the support that we receive from our families.

Please continue to pray for Maggie, that we can find a resolution to this diarrhea problem, that the side effects to the chemo and steroids will disappear, that we can have some "normalcy," and most importantly the cancer will never return.

The Clinic

I called into the clinic this morning again to explain Maggie's symptoms of diarrhea and difficulty breathing. I think finally I got through to them when I shared over 13+ stools and she was breathing very fast. I would compare Maggie's breathing to a person who had just run a race. Thankfully she told us we should come in and so we went in around 10:15 am.

After describing the side effects, they ordered Maggie's labs to be drawn as well as an x-ray on her belly. They determined that Maggie's breathing difficulties are due to her distended belly. The x-ray showed a lot of air in Maggie's belly as well as some solid stool (we have yet to see either). Maggie's labs showed that her potassium was down to 2.1, the lowest Maggie has ever been (3.7 and above is normal). Maggie's bi-carb, another description of her hydration was at 10.9 (normal is between 20-27). This would be considered dehydration, however she had 6 wet diapers before she was given fluids. The nurse explained to me that due to Maggie's breathing difficulties she most likely was not expelling the CO2 well enough, therefore, the low number. Dr. French explained it was all related to her diarrhea (obviously).

So, finally we got Maggie hooked up to fluids, 2 hours of a potassium bollus and 2 hours of rehydration fluids. I asked Dr. French whether Maggie's potassium dropped throughout the course of the week of steroids or during her 13 episodes the previous day, he said most likely the previous day. I then politely explained that I had tried to bring Maggie in on Monday, but was denied. Whatever the reason, she needed to be seen and I am glad that we were able to at least replenish her electrolytes some.

Dr. French is to the point where he is getting pretty frustrated with the diarrhea situation. He came into our clinic room tonight, after being there for 8 hours, and came up with a "game plan." He is taking her off her of appetite stimulant, Megase- this a possible diarrhea inducer. He has also said that once Maggie has one liquid stool to give her 5 ml of Immodium every 3 hours until it stops. If it doesn't stop, that evening we will be giving her an antibiotic that will hopefully stop the diarrhea. If this still doesn't stop it, Maggie will have to come into the clinic to get a shot, and then I will take home the remaining 3 or so shots to continue to give her. This is the routine that they use for kids that take an actual chemo drug that causes diarrhea. We have already begun this new regime as Maggie has had 4 diarrhea stools since coming home from the clinic. Ironically so, she didn't have one stool while there (they wanted to collect a sample which we then had to do at home). Diarrhea is our life so I can't imagine that we won't be going to stage 3 of this regime often.

One other piece to our new plan is that Maggie is not allowed to drink milk or juice, or eat raw fruits or vegetables. They want to do anything possible to not aggrivate the diarrhea further.

As for the Cincinnati Children's GI specialist. A wonderful nurse at Dayton has already made a call to the specialists and has said she will be "whining" to them to get Maggie in sooner. She is a wonderful woman who actually attends the church that we've been going to in Dayton since we moved here. Hopefully she'll be able to make a difference and we can get Maggie in sooner than the end of October. Dr. French is adament that the chemo is not causing this diarrhea. He has never seen a child suffer like this before.

Maggie will go in for labs tomorrow morning to see whether her levels have come back up. Please pray that they will be within the normal range and that Maggie's diarrhea will go away completely.

It never ends

Well, on the positive side, Maggie's demeanor is improving. She is beginning to talk again and has gained some appetite interest again. She managed, for the most part, to keep her food down, except for a spit-up during her nap. Yesterday Maggie did really well until the evening and then ended up vomiting 2 times at Andy's brother's house, and then started her diarrhea once again to total 6 episodes yesterday.

Now to the not-so-positive-side. I called the nurse today hoping that they would want to see Maggie because her potassium could be low, due to all the excretions. She also had such a rough week with all of the side effects to the chemo and steroids that we wanted her to be looked at to make sure she was okay. However, we were denied a visit to the clinic saying that we should wait until the end of the week if Maggie's diarrhea persisted. We learned that many of her side effects were caused by the Vincristine chemo, which makes us think that she is receiving too much. Her fine motor skills were affected, she has fallen twice when she tries to crawl, she had stomach pain, jaw pain, she couldn't keep her head up, she was listless, slept much of the time, and when she wasn't sleeping she was crying constantly. Maggie is now hoarse as well and has a bit of a cough, which I thought was a symptom, but the nurse said today it was most likely from 3 days of crying. Supposedly Maggie's vomiting and nausea is not from the Vincristine, but instead from the steroids--perhaps a reflux problem. Whatever the cause, this last week was one of the worst weeks we've experienced in a long time. It cannot continue like this each month.

And now, Maggie is having rapid-fire diarrhea. She has had over 13 episodes today and I am sure we will experience much more tonight. I have decided regardless of what the nurse says tomorrow, we will be visiting the clinic to get Maggie looked at. There is absolutely no reason why she should be experiencing diarrhea or any of the other remaining side effects like she is.

And to make things even better, we scheduled our second opinion with Cincinnati Children's GI doctors today and the soonest they could get us in is October 30. So, we must go another month and a half constantly worrying about whether Maggie's electrolytes are okay. And, the poor thing will continue to eat, but not gain any strength or weight from her food because it leaves her body too quickly for it to absorb the nutrients. It's just this horrible unending cycle. Who said that Maintenance was going to be easier? Andy commented tonight that Maggie's side effects are worse now than they were when she was getting high dose chemo. We realize that fighting cancer wasn't going to be easy, but this is a bit more than we expected.

Please pray for dear Maggie, that her diarrhea will at least subside a bit, that we might get some answers to how to deal with it soon, and that she will fully recover from all the toxins that are being put into her body.

Lingering effects

We saw a moment of our old Maggie today when she asked for cake and said "Dada." We thought maybe she was coming out of her steroid trance, but that was only a moment of our old Maggie. Maggie has been dealing with nausea and vomiting today. She has vomited on 3 separate occasions, each time completely losing the little food that was in her belly (and medicine as well).

These steroids are just HORRIBLE on Maggie. They transform her and make her miserable. We have noticed that her eye-hand coordination has been affected as she put her hand in my milk today and when trying to grab a fry, grabbed my hand instead. I have never seen it this bad before, let alone this type of effect. I hope it is only temporary and this will resolve itself soon.

Please continue to pray for Maggie that the effects of the steroids will go away quickly. She is continuing to moan much of the day and is just as I said earlier, miserable. It aches us to see her feeling and acting this way.