Thanksgiving 2011

Simply being home and together was enough of a reason to give thanks this year.

Last year we celebrated Piper being cancer free but she was beginning to suffer from that blasted diarrhea/vomit fest. The year before that we were still reeling from the fact that our infant even had cancer and we spent the holiday receiving chemo inpatient. And the year before that we had just found out that we were adding another fancy face to this Needham crew. Ups and Downs seem to be our trademark, I believe.

This year we spent it with Chads side of the family and feasted on amazing food and were able to watch the girls run my in laws busy as they like to do. Linley loves the attention and is confident enough to roll with new surroundings but Piper likes a chance to warm up...kind of like her mother. And Chad did not get a "turkey coma" as he likes because I had a glass of wine and that had me dozing on the couch while the girls went for a walk with all those adults who love them so. Don't judge me, please.

After eating more than we ever should have we headed downtown for our annual trek to see the Macy's Christmas tree lighting. Usually we ride Marta and stand at the back and enjoy it that way. This year we were given VIP seating because Scotty McCreery was the featured performer and my six year old has loved him since the first time she saw him on American Idol. She loved seeing him sing so up close and even Piper was a trooper through the whole show and the lighting and all. We weren't able to shake his hand as she so wanted but the whole experience was pretty exciting for her. Major thanks to the every amazing Karen at the clinic for making this possible.

Its sort of a "photo dump" sort of night.

Here's the post where I catch up on the last month of our lives.

We were blessed to celebrate Thanksgiving at home, a fact that was huge to us since we know that Christmas will be in the midst of radiation and chemo and prior to a transplant. I am deliberately not planning many thing and am choosing to stay close to home. Its a good season for us four...the girls are an absolute joy to be around and with each other and that warms me in a way that nothing else ever can. That being said, we still stay busy painting pumpkins, figuring out our new Ipads, enjoying bonfires, learning the joys of the potty, getting awards for soccer and singing in chapel. I am Susanna, after all..cant sit too still.

Sadly, I am not superwoman and I find that in order to actually participate and enjoy a lot of the moments our family has I have to put the camera down and not worry about it. I'm going to assume that its the ages of my girls since I know many a mother who is somehow able to detail each significant situation and still actually be in the mix of it all.

I want to be like those ladies someday but today, I give you a few new posts about those two sweet girls that I adore and their often silly, sometimes grumpy, frequently crooked, usually smiling blue eyed wonder filled faces. You can adore them too...try not to.

I'm back.

Last Monday morning we got the call that the preliminary results showed Piper was in remission. For some reason, while I was thrilled, I found myself keeping it in. Numerous people called or texted or emailed and wanted to know the results but still I couldn't quite get myself to talk about it until we got the final report. When I still had not received a call contradicting the preliminary results from Dr. B the next day I was ready to believe it and begin spreading the news. So I did...I told the ladies in my Bible Study and my family. I even found myself telling the cashier at Publix, who was quite happy for me and my little bald blue eyed daughter. Maybe we finally had this beast under control?

It wasn't until Tuesday night that Dr. B called me and told me that Piper still has .16% MRD. (MRD stands for minimal residual disease and it represents the amount of leukemia found within her marrow). At relapse she had 67%, after the first round she had 2% and now she has .16%...not enough to declare her in remission although it is incredibly minuscule. Somehow I found myself again in a slump. I chose to not talk, explain and/or mull on the fact that the beast was still within her sweet little body. There were many tears and fears and they were very, very, very oppressive thoughts until we went to the clinic and finally sat down with Dr. B.

Basically, Dr. B is not overly concerned about the small amount found in her marrow. Piper. At this point they feel if they were to give Piper even more high dose chemo, instead of it conquering more leukemia it would actually cause her cancer to become resistant. This would be the worst thing possible.

And so the plan continues to be a transplant here in Atlanta at Egleston. Pipers treatment will consist of Total Body Radiation, higher doses of chemotherapy than she has ever had before and then finally when her body is as empty of her own cells as possible, the "perfect match" transplant (December 28). Between now and the transplant admission date (December 19) Piper will received lower doses of chemo every 10 days beginning last week. So far, apart from nausea, loss of appetite and some diarrhea, she is faring well.

Did I just write that? Is it warped that all the above still means "well"?

We will be home here in Athens for the next 4 weeks. Every ten days will be chemo in the clinic. And the transplant workup will begin on December 6th and 7th while they examine and test her little body to ensure it is strong enough to proceed. At this time we have no immediate concerns but the amount of chemotherapy she has already received is enormous and has the potential to damage so much.


I so do not care.

I will worry about that one another day.

Its just so nice being home with both girls and that husband of mine.

Now I am glad that I have filled you in on all the ugly but hopeful plans and I can start filling you in on the two year old I have who is beginning to walk alone and the six year old who is beginning to come up with some of the most (flashy, quirky) interesting outfits that are always worth a picture or two.

no news.

I have no news. We have had a blessedly busy weekend and my mind has not often wandered over to the "results of my daughters bone marrow aspirate and potentially the rest of her sweet little life" side of things.

Thank God for that.

I am only posting because I am at a loss. I have spent a large chunk of the past 2 months scouring the Internet for cures, treatment options and a dash of hope for Piper. There is a frightening little amount of information out there. I cannot tell you how terrifying this is. We are continuing to make steps towards the bone marrow transplant here in Atlanta but I cannot help but feel like we are missing something.

I had so hoped it were St. Jude.

It was the best option...I cannot believe that Piper will probably miss out on this only because there is not enough room. Room, beds, space...who would have thought such simple things would be the deciding factors in how and when to cure my child.

And how am I still breathing, laughing, moving about when the very fact is that medical options for Piper are limited. That despite 2 years of the worst ugly you can ever imagine we are still facing such potentially such an even uglier few months. That irregardless of the primitive and fierce love and protection I have given Piper it may not be enough to push me through this season. I am weary. So weary.

Within this evening alone I have sent out 9 emails to specialist and physicians all over the States and Canada, all the while praying for an answer. I don't even know what to expect at this point and am constantly bouncing from the highest of highs to the lowest of lows ever imagined. This easy going mother has begun to morph into a frantic and aggressive mom at times when the sheer lack of options begins to prove itself.

You cannot do this Susanna, you are going to have to trust Gods sovereignty.

Yet again.

Remind me of that please sweet friends. And pray.

this post sounds a lot more calm than I feel.

Tomorrow morning, much too early than we prefer to be up, Chad will be taking Piper into Atlanta for her lumbar aspirate. This is the procedure in which she will be sedated and marrow will be removed from her lumbar in order for it to be checked to see if she is in remission yet.

When Piper first was diagnosed I remember feeling very much like "of course she will be in remission". When Piper relapsed I remember feeling again like "of course she will be in remission"...at this point I sincerely have no clue. No inkling or idea.

Each visit to the clinic Piper has a CBC done and we pray her counts continue to show no leukemia in her blood work, though we still know it is hiding somewhere. If she is low on platelets or hemoglobin she will have that transfusion. During the sedation they will also check her central nervous system since there has been cells there in the past. She will not be receiving any chemo in order for them to get as clear of results as possible. Piper's CMV levels are also monitored because with no immune system she is at a high risk of a recurrence and well, that was a ridiculous thing for her to fight off the first time much less attempting to go into a transplant.

We usually get results in 2 or three days so we could have results Friday afternoon but I don't expect them until early next week. And as usual, we don't know specific plans for the near future until we know what her body is doing. And yes, this is slightly nerve racking. Slightly.

What we do know:

1) chemotherapy is no longer the cure for Piper. Her leukemia has outsmarted it.

2) St Jude is still filled to capacity. They cannot guarantee us space within 2 months.

3) Irregardless of tomorrows results, we need to get the girl to a transplant. Soon.

4) She has a "perfect match" who is ready to donate at any time.

5) This match means treatment will be done here in Atlanta.


Short answer...yes, I am very nervous. The treatment at St. Jude is better, more effective. It is definitely our first choice despite how crazy it would make our lives for a few months. A traditional transplant at Egleston was our back up plan. We are still hoping and praying for a room to open up but the fact is that Piper needs to have a transplant soon...if we were to wait two months they are certain that she will only have more leukemia at transplant rather than less making the chance of success limited.

While I was complaining about this to a group of friends the other day I was reminded that whatever happens is actually Gods first plan. It is what He wants to happen, irregardless of what I want or what we feel is the best move. So with that in mind we are just praying now for clear direction. Whatever the best option is we want to know for sure and not be left making decisions too big for us to handle.

As for now we are enjoying the time at home. I love the simplicity of preparing Linleys lunch the night before, of making chili with Piper during the day and playing outside with the girls after school. Just going to the grocery store and not stocking up on ready made meals and purchasing food to make a homemade dinner is a great feeling. Not surprisingly, cleaning the bathroom is not nearly as fullfilling which explains the fact that I just dont plan to clean it. Im feeling lazy like that.

The death of sweet Tyler last week was a huge wake up as to what we are fighting against. It has frightened me and worried me and caused me much stress...that being said, I am attempting to remember that this is not in my hands (or fears) at all and that the results of the next few months are not up to me.

Piper is in Gods hands as are myself, Chad and Linley.

This is a very good place to be.

Fun Friday

One thing I have loved about this new school that Linley is at is the fact that they work very hard. Academically this school keeps Linley on her toes (as well as Chad and I). But instead of it being all work, work, learn, learn they make a point to play hard also. Each month they celebrate their good work with a field trip, different each time but still something special and out of the box and exciting.

I love this.

And I especially enjoyed having the time with Linley and meeting her friends.

So many funny little kiddos.

My sweet Linley had a great time spending the day experiencing much fall fun.

She slid:


She jumped:

She snacked:

She rode:

She dug:

She zipped:

She swung:

She buried:


Have I ever mentioned just how much I love this girl?

death

Sometimes death feels like an eternity away. So often we chose to not mentally go there for fear or for lack of understanding...often for me I don't go there because I know too well that it may very well come looking for my family all too soon.

In the last week I have lost two people. Two guys who were special to me for different ways and yet both of whom will stand for something so very good in my memory.


Last Thursday afternoon, my Uncle Dean passed away during an afternoon nap. Uncle Dean loved the Lord more than the wife, children, grandchildren and friends he left behind and that seems to be the saving grace for their loss. He called me "no-shoes-anna" when I was a little girl because my feet were to tiny for shoes. He was my fathers best man in my parents wedding. It was he and his wife who gave me my own best friend and maid of honor for my own wedding years later and I am forever indebted to him for that.

He was the epitome of a faithful man of God.

His family will continue to mirror Uncle Deans faithfulness, I am certain.

Today at 4:33pm a fellow infant leukemia fighter passed away. Tyler Burdick and his mom and family were so very strong, so very optimistic and so very selfless throughout the course of their 2+ years of fighting this terror. I was lucky to "meet" Stephanie on the online infant leukemia support group and we shared similar stories and experiences...she was always the first to encourage another and the last to complain.

She was the epitome of a strong cancer mother.

This loss will not change that about her, I am certain.

These two deaths have hit me hard. The fact that I, despite my faith, find myself questioning God and his goodness is merely the ripple effect of pain and loss. I cannot imagine losing my father as he is the man I most look up to and I cannot imagine losing my daughters whom I carried and bore and hold. But someday my children and my father will pass on. I cannot control this, as Pipers illness has taught me, and if the tears that hurt me today are any indication then I will not handle this as well as I haughtily thought back in the days when death was far away and life seemed so simple.


I have been listening to this song on repeat all week. Its so good.

And despite my sadness it is true.