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.

All is Well

I want to thank you again for all of your prayers.  It has been a crazy kind of month with the different ways that we have been tested in regards to Maggie's health.  Maggie's numbers all looked good today, including her electrolytes, which I was a bit worried about given her lack of liquids this past week.  Everyone worked very quickly to get us in and out.  We were there for only 3 1/2 hours.  Maggie, however, was very ready to go after about 30 minutes.  She normally doesn't mind the clinic, but after being forced to take Tylenol, she was upset and wanted to go home to "play outside."  She talked about getting a toy at the clinic for the last couple of days, but even refused that.  So, she was a little rough, but we will gladly take a grouchy, healthy Maggie any day.

Thank you again for your prayers.  The further we get from the end of treatment, you would think it would get easier, but it hasn't yet.  We hope maybe with these good blood counts, we might be able to relax a little.  We sure could use a break from worrying.

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.