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.

One Year

A year ago yesterday, May 7, we brought Maggie home from the longest journey we had ever been on.  Since that day, we have not spent a night in the hospital.  I have read some of our post-ICU stay blogs and what the doctor's said about Maggie's recovery.  They had said that it would take a year for Maggie's lungs to recover.  While we still do not know the state of Maggie's lungs, it has been a year so we hope that they are fully recovered.  We will find this out sometime soon, though her procedures have not yet been scheduled.  In the past year, Maggie has yet to get a cold, therefore, we don't know how her body will respond to a cold.  We continue to keep her oxygen supplies "just in case."

We never were able to formally thank you all for your prayers, prayer quilts, support through money and gift cards, and gifts for Maggie.  You all have helped us through the last almost 3 years and we are very grateful.  Our journey is not over, but hopefully we will never have to experience what we experienced the last 3 years.  We appreciate your continued prayers for Maggie.

 The photos were taken on Easter Sunday.

Moving Forward

Maggie had her monthly clinic appointment on Monday this past week.  Everything looked good and we received some word about "the plan."  Dr. French asked Maggie if she was ready to get her port taken out, to which she nodded yes.  So, that's the plan.  I made the call to Cincinnati and Dr. Mezoff's nurse is working on arranging GI, pulmonary, and a surgeon to hopefully do all procedures in one surgery.  It probably won't happen until sometime in May, if all goes well.  Either way, we are looking forward to this next step.  Most children, when they finish treatment have their port removed within a couple of months, but given Maggie's serious illness, Dr. French wanted to give her an immune booster throughout the cold/flu season.  We made it through!

In other news, Miss Maggie is now potty trained.  Last month, she decided one day she was done going in her diaper.  I put a lot of work into potty training a couple of months ago, but I guess she wanted to do it on her time.  Either way, we are very proud of her.

My Paternal Grandma

My paternal Grandma passed away this morning after suffering a head trauma from a fall last Wednesday.  We were told she would not make it more than 24 hours, but she lasted a week.  Not only was she a strong woman, but she was kind, generous, loving and always happy.  We are incredibly sad and would appreciate prayers for my Grandpa and family.  

Great Grandpa and Grandma Lehman with their great grandchildren.