Prayers

Maggie has her clinic visit tomorrow.  Please keep her in your prayers.  We feel that tomorrow is a very important day for us.  We believe that Maggie had the flu this past week (I say "believe" because we have never experienced a "normal" illness before, so we aren't entirely sure what to make of things).  She vomited several times last Tuesday morning and since then her appetite has been very poor.  She has also refused drinking and so we have had very few wet diapers.  Today was the first time that we saw better urine output.

With our scare two weeks ago, we are a little frazzled and worry easily.  We pray that tomorrow is another good day and that it continues to remind us that Maggie is indeed healed.  Please pray for a great clinic appointment and that Maggie is completely healed of cancer.  Thank you.

One Rough Week

The past week has been a very rough one for us.  It started out last week with Colin going to the doctors with a really bad case of cradle cap and rash.  The doctor thought it would ease our (my) worried minds if we did a blood test on him to just show he was okay (given Maggie's history).  We didn't want this, but went with it because it would show some allergy issues, which might be the cause of Colin's rash.  They drew blood Wednesday at 5:30 and said that we wouldn't hear results until the next morning.  The night of waiting reminded us of the weekend of waiting that we did almost 3 years ago.  It was torture and it started a whirlwind of memories, fears, worries, etc.  The next morning she called and told us there were some numbers that were too high and others that were too low.  She wanted to send it over to Maggie's oncologist to have them look it over.  Nobody ever wants to hear something like that.  Later in the afternoon we got a call from the oncology nurse that the numbers were fine.  While the doctor was only thinking she was doing us a favor, it ended up being quite torturous and we just haven't quite recovered from it.

Skip ahead to yesterday, with our nerves already frazzled, I was playing with Maggie and found a bump on the back of her neck.  An immediate feeling of sickness came over my body and I immediately called the hem/oc clinic.  The nurse I confide in said that it was best if we wait a couple of days to see if it grows or changes.  I think one of the most torturous things to do to a parent who has a child with a history of cancer is to make them wait.  After awhile I called them back and requested blood counts immediately.  They called later and wanted to see Maggie instead, saying that it might not necessarily show up in the counts.  Again, a night of waiting, not eating, not sleeping...torture.

We went in to see Dr. French and he labeled it benign, most likely from the eczema on her head, neck, and body.  He will take a look at it in two weeks at Maggie's monthly clinic visit, but for now, we need to start eating again.

Worry.  That's all I ever do anymore.  I just can't get past the worry.  I know what I need to do, but it is so hard after all that we've been through.  I'm told it's a process, but when moments like the last week that we've had come around, everything resurfaces.  My psychologist husband says it's PTSD (post traumatic stress disorder) and Maggie's nurse agrees.  What we have been through in the last 2 1/2 years has been so scary (that's putting it kindly) and we are completely frazzled.

We thank you so much for the outpouring support and prayers, and I ask that you continue to pray for Maggie that she will remain cancer-free and healthy.  I also ask that you pray for us.  We are worn out.

Say A Prayer

If you could say a little prayer for Maggie, we found a pea-sized bump on the back of her neck.  We have an appointment with Dr. French tomorrow.  Pray that it is benign.  We are sick with worry.

One Year

Today marks a very important day--one year off of treatment. That's a big milestone in Maggie's journey to healing. Along with this day, marks a year ago that Maggie was admitted into the hospital for what would be the 10 hardest weeks of our lives. You would never know, looking at Maggie, what she endured and thankfully she doesn't remember a thing. Maggie is the happiest little girl and we are so thankful to have her in our lives.

Enjoy the pictures that were taken back in December by Erika Ressler (http://erika-marie.blogspot.com/). 

She is our "Miracle Maggie."

Happy Valentine's Day!

We had a very busy Valentine's yesterday.  Colin turned 4 months old and had his 4 month checkup and shots, and Maggie had her monthly clinic appointment.  The day still does not get any easier for me, but she continues to prove to us that she is a healthy, growing little girl.  Maggie weighed in at 33 pounds and has even grown an inch and a half- 37 1/2 inches tall!

With the end of this month comes a big milestone for us-- 1 year off treatment.  It also is a hard time for me as I remember (and try to forget) all that we went through last year.  Andy and I still cannot read our blog from the end of February through the beginning of May of last year.  It is very hard for us and even talking about it, and seeing the images in our head is very difficult.  One day I will look back and read about the hardest time in both of our lives and it won't be so painful, but for now we will just remember that God showed us miracle after miracle with our little girl.  

Maggie continues to show us that she is like any other normal 3 year old.  She fights for independence, refuses to be potty trained, mothers her little brother (and Daddy), and tells us what to do.  She's a strong-willed little girl, but we wouldn't have it any other way.  Her brother, Colin, does a good job of leveling it all out by his laid-back, social personality.  He loves to give a smile to anyone who will look his way.  Maggie continues to do a great job of taking care of him and if ever someone wants "shy" Maggie to talk to them, just ask about her brother.  She loves to talk about her brother.

Thank you for keeping up with us and for your continued prayers.  I hope as time goes on, it will get "easier" for us, especially me.

The Plan

Andy gave me a "break" yesterday by taking Maggie to her monthly clinic visit.  You would think with each month, it would get easier, but it has not.  I still awaited anxiously for Maggie's counts and once I found out that "they looked great," I felt like a weight had been taken off of my shoulders.  This will most likely occur again next month, as there is no guarantee, but for this week we can feel relief.

Unfortunately for us, it doesn't take much to get our minds wandering/wondering.  A spot here, a bump there, a change of behavior...  It is a process that we are continually working through.  We will be doing so well and then we have a weak moment where fear creeps back in.  Will it ever get easier?

Dr. French came into the room yesterday with another plan.  Maggie had her last infusion of the anti-pneumonia drug, Pentamadine, yesterday.  She will continue through the month of April with IVIG's to help give her body time to continue healing from her critical illness.  They will give her a break in the month of May and then check her IGG level (immune system function) in June.  If her levels look good, they will take her port out in June.  Of course with her port coming out, she will also have a scope to check her stomach and a CT scan to check her lungs.  That's the plan for now, but we know it can always change, as it has so many times already.

Another remarkable number we received yesterday was Maggie's weight.  She weighed 31 lbs. 1 oz. last month and this month she weighs 32 lbs. 10 oz.-- a pound and a half in a month and 6 pounds since her critical illness began.  Throughout treatment we struggled so much with getting Maggie to eat and gain weight.  I'm so happy to say that she is such a good eater (though she does tend to wander around the room eating during the second half of the meal).  Her foot has also grown 4 sizes since February.  She is making up for all the lack of growing that she did during treatment.  She's a healthy little girl!

Like I said in the previous post, the end of this month marks 11 months off treatment.  Next month will be a milestone in the cancer world, including our own.  We hope to meet every milestone possible in this cancer journey.

Last week we had our first big snow storm.  Maggie got snow clothes for Christmas and had the chance to use them with Andy.  This was her first real snow experience--being able to walk in the snow (though challenging at first) and pull her new sled.  She had such fun that she didn't want to come in.

Merry Belated Christmas

Merry Belated Christmas! We hope you all had a very Merry Christmas and a Happy New Year. We had an abridged Christmas celebrating with some of our family members. While we are still very cautious with Maggie and her health, we really wanted to spend the holiday with family, since we decided to stay isolated for Thanksgiving. We spent five days with the family, trying to stay away from illness, and I'm happy to say that we all remained healthy. This is something I will always stress about given the horrific journey we experienced, but we are also aware that we can't keep Maggie isolated forever (as Dr. French has told us) and Maggie needs to socialize with other little children.

We continue with our "normal" life. We haven't taken this for granted, nor will we ever. Lately, Maggie has loved putting puzzles together. She has a 24 piece Dora puzzle that she puts together all by herself. Her other big interest for over a month now is Toy Story. She managed to collect Buzz and Woody for Christmas from Santa. We are currently in a transition with going to no naps. Maggie had been going to sleep at night between 11-12. Andy would lay with her in bed and he actually fell asleep before she did. For that reason, we decided maybe we would try no nap and with this new schedule, she goes to sleep within minutes at a bedtime like other kids her age, and Andy and I have some downtime in the evening. While this new schedule is not perfect (she has fallen asleep around 6 pm several times and I have lost my nap as well), it is something we are moving towards.

Maggie continues to love on her little brother, Colin. When she comes into the room, his eyes will brighten with a smile. There are times when she has a tendency to become jealous, telling me that he doesn't need to eat and is fine, but for the most part she dotes on him. Colin is a growing boy, almost 3 months old. He is wearing 6-9 month clothes, as he is such a big boy. He is a much easier baby than what Maggie was, which is a blessing now having two.

Though we are much slower in posting on the blog, we thank you all for continuing to follow along in our lives. Next week Maggie goes back in for her monthly clinic appointment. Please keep her in your prayers that she continues to be healthy. At the end of the month, she will have been off chemo for 11 months. We continue to pray daily that the cancer will never return.

Our annual Christmas tree picture with 4!

Colin's first Christmas

Maggie was clapping when she saw she had opened Buzz Lightyear.

She received some princess dress-up clothes and had to try them on.

Sporting her new slippers.