Maggie's First Haircut

After 3 years and 10 months, we decided it was time to cut Maggie's hair.  Her hair had multiple layers in it from the starts of growth from her treatment.  We didn't go crazy with her hair, but only cut the bottom layer (this layer started growing after her intense treatment and never fell out again).  It was a bit bittersweet to see it go, but in cutting her hair, a part of us feels like we are saying, "See cancer, we can and have moved on!"

Maggie was not too excited about getting her hair cut until I showed her a video and she saw that the little girl got to ride in a car and get a balloon.  The balloon sold it.  She was afraid though that the scissors would hurt, but as she was leaving the salon, she said, "It didn't hurt after all."  She was quite excited to have her hair cut and ended up calling several people to tell them and show them on skype.  It was a first of many!

She chose the pink car, but next time she wants the pink
airplane.

The length before the cut.

The length after the cut.  This is also Maggie's
favorite picture because it shows The
Berenstain Bears that she was watching.

The after shot.

Changes, Changes

We have been busy, busy the last month,which is the reason for the lack of posts.  We are in the process of making a lot of changes...  First off, a big moment in our family's life was Andy's passing of his psychology licensure test.  He has been studying for over 6 months and has been working very hard.  In the last couple of months, the kids and I have left for a week at a time to give Andy study time.  We have all sacrificed for this test and it has paid off.  Andy is currently volunteering to finish his post-doc by the end of August.  He will then have one more oral exam to take and once he has passed that, he will be a licensed psychologist.  The hope is that by the end of September, Andy will be beginning a new job as a licensed psychologist in Medina, Ohio.  Therefore, we will be moving back to northeast Ohio, where our family lives.  We are very much looking forward to moving back near home, near our support system.  After everything we have been going through with Maggie the last 3 years, we know how much more important it is to have family support nearby.  

We have been working very hard at getting our house in order to sell.  On Thursday, we officially put our house up on the market--a scary process.  We are hoping to have our house sold before Andy begins his job, which might be a bit of a stretch, but we are praying this might happen.  There are a lot of unknowns right now (quite honestly, that has been the theme of our life the last 3 years).  We know that God has watched over us throughout Maggie's treatment, and we feel that God will continue to do so.  There is a lot of excitement in the air and we look forward to what the future holds.

Just a few pictures of this past weekend.  We were happy to celebrate the wedding of a friend in Pennsylvania.  We enjoyed the weekend get-away.

Maggie was a great passenger.  And quite cool
in my shades.

Our updated family picture.

No Worry

Today marks a big day for us.  We went to the clinic for monthly labs and they came back great (though this was the first time we didn’t have the port and unfortunately Maggie is a very hard stick.  She ended up having to give 3 vials of blood through a finger prick, which I’m told hurts worse than using a vein).  Maggie was so brave and did so well.  She didn’t shed a tear when they were searching for a vein with the needle in her arm.  Squeezing the blood from her finger was the most painful part and she told me she didn’t want to go to her doctor’s appointment ever again.  We got the great news that we will be moving to every other month appointments now.  This is a great feat as it means that she is further along post-treatment and every month she goes in remission is a month closer to being cured (5 years post-treatment is considered “cured”).  While this is excellent news, there is a sense of comfort in getting counts checked monthly.  On the other hand, monthly appointments also bring on a nervousness that would otherwise not be there. 

Another reason why this is a big day is that Colin is the age that Maggie was at her diagnosis.  It brings on many different emotions.  I mentioned this day to one of the nurses today and she remembers Maggie the day she was diagnosed.  She remembers her pudginess and red hair.  She and everyone we meet always comment on how Maggie and Colin look so much alike (minus the color of hair).  It’s sad to remember that this innocent little baby was about to start the hardest road of her life.  It’s cruel what she had to endure and no baby should ever have to experience that. 

Though Colin’s chances of getting leukemia are very small, I still worry about him.  And for this reason, getting to today and having him healthy is a big milestone (for me anyways).  I will probably continue to check off big milestones related to cancer, for example, him turning a year and being cancer free (because I now know that his survival rate just increased by 30%).  It’s just the way my mind works now. 

Clinic days and blood count days will always be a big day for us.  If this day ever becomes routine, it will be amazing.    But regardless of the type of day it is, we will always celebrate because we will never take for granted great counts.  So today, we celebrate because for at least today, there is NOTHING to worry about!   No lung issues, no cancer issues, only a mild case of acid reflux (but we can live with that).  Ahh, how nice it is to say that.

3 Years!

Today is not only Andy's brother's birthday (happy birthday, Jeff), but it is the 3 year anniversary of Maggie's diagnosis with leukemia.  In previous years, we referred to it as a "crapiversary," which is a more apt label that we got from one of the leukemia webpages that we followed.  Anyways, it is a big deal for us, and we're happy to be past another milestone.  This year, we have the added significance of Colin's age.  Today he is 6 days younger than Maggie was when she was diagnosed.  We don't track this because we expect Colin to get sick, but we can't help but recall having a child his age begin such a nasty journey of treatment.  When we look at him now, it is hard for us to remember Maggie actually being so small when this all began.  But she was.

We aren't totally done worrying about Maggie; we'll let you know when that day comes.  But today was another big day and a good sign that her cancer has not come back.  We look forward to more anniversaries coming and going with more good health reports.

Thank you

Thank you all for your concern and kind thoughts.  Maggie did wonderfully today.  After the procedure, we were advised that Maggie should lay low for the day, to let the anesthesia wear off, to get some rest.  Well, she was bouncing around just like any other day.  She had some stories to tell this evening, for instance saying that she didn't like this kind of doctor's appointment (she enjoys visiting the hem/onc clinic and Dr. French and the nurses).  Also, of the anesthesia mask that they put in her face,  she recalled "I told them I didn't want to smell it!"  Upon waking and finding an uncomfortable IV in her foot, she cried and cried and said, "My foot says get it off of me!  My foot says get me out of here!"  She showed her red-haired spunk that has gotten her through so much.

As for the results, we couldn't be happier.  Her stomach looks normal, only minimal signs that something was wrong in the past but had since healed.  Her bronchoscopy was normal, too.  Her lungs, most importantly, looked good, too.  The doctors never knew what to tell us about the kind of recovery her lungs would have, wondering if she'd have permanent damage from the scarring.  However, we were told today that her lungs looked normal!  Not just "good considering what she went through," but NORMAL!

So, again, we couldn't be any happier.  We have to wait a couple of days to get results from the cell cultures from both her lungs and stomach (the last word), but based on the way she looked, we don't have too much to worry about.

Finally, her port is gone, no longer needed, and it came out easily and without complication.

More good days are ahead for Maggie and her family!

The Big Day!

The big day is coming!  Maggie is having her smorgasbord of procedures and surgery on Monday, June 20.  Each of her specialists wanted to get a sense of how she's healed in the year plus since her critical illness last spring.  So, they are combining them all in one extended procedure so she doesn't have to be put under more than once.  She will be having a scope done of her belly to check the status of her ulcers.  She will have a bronchoscopy and washing done of her lungs to see what types of cells are present.  She will also have a CT scan to check her current lung health and recovery from her lung injury.  Finally, she will have her port removed, something that most children have removed within the first 3 months off of treatment.  Dr. French thinks that Maggie's immune system has recovered enough to not have to need IVIG's anymore (immune system antibodies) and that she doesn't need to have a central IV line.  The removal of her port signifies the true END of the last nearly three years of Maggie's treatment.

These procedures require Maggie to obviously be sedated, but also intubated (put on a ventilator).  Both of these situations bring some worry to me (though Andy thinks it will be routine).  Last year, the pulmonary doctors wanted to do a repeat CT scan of Maggie's lungs while she was still hospitalized, but the oncologists thought that it would be too risky to undergo a procedure like that (one that would require sedation and intubation again).  For this reason, I would ask if you would say a prayer for Maggie on Monday morning.  Her procedures begin at 8:38 (ironically, the same time of the day that she was born).  I hope and expect that this day will be the last page in Maggie's "cancer" book.

Relief

You would think that as time goes by, clinic visits would become easier for us, but that just isn't the case...yet.  We had our monthly clinic visit scheduled for next Tuesday, but I called this morning to see if we could change it to tomorrow, so that I can take the kids out of town for a week plus.  Dr. French wasn't in tomorrow, but they could squeeze us in today.  Alright, we'll take it (insert increased anxiety).

Why after all this time are we still nervous?  Last month we went in feeling pretty good and then got Maggie's counts and were a bit disappointed.  Maggie's ANC (fights infection) was 1380.  We've always been told that 1500 is normal, so we saw it as below normal.  In the last several months, Maggie's ANC has slowly trended down and this has made us slightly worried.  Dr. French said that her numbers were fine and not to worry, but this past month we have unfortunately done just that...worry.  Yes, we are told not to, but it is hard when you've lived through what we have lived through.

So, our thoughts all month have been, "we just need to get to this next clinic appointment and counts."  And that moment came very quickly upon us this morning.  And how did she do?  Excellent.  Relief, complete relief and happiness is what we felt once her numbers came in.  Maggie had an ANC of 2100.  Perfect numbers.  We are so happy and for once in a long time, we feel that we can relax and enjoy our life.  I can't promise that worry won't creep up on us and we won't analyze every little bruise and mark, but for this one brief moment we have complete relief knowing that Maggie is PERFECT.  That feeling is one of the best feelings ever.

We attended the Emily's Beads of Courage Dayton Dragon's
event a couple of weeks ago.