Wednesday, December 24, 2008

Thankful for Another Day

It's a quiet morning here at the Scheck House. Henry is watching TV. The girls are at their Grandmother's in Frederick and we are getting a late start after a very, very late night. We took him to the Johns Hopkins Emergency Department last night after experiencing stroke-like symptoms; he began vomiting while out with his sisters and a family friend at dinner. I came to retrieve him and found him doing fine, however on the way home he started to slur his speech badly and I could hear the drool pooling in his mouth as he spoke. I phoned Tara who had just arrived home and once there ourselves we observed him for a bit.

We watched for just a couple of minutes and began vomiting again, after which he became less responsive and appeared not to be able to move his left arm. Drool began coming out his mouth and while he could answer my questions at times, he was unintelligible or didn't make any sense.

During these last few weeks, and based on his feeling so good, we've begun operating under the assumption that Henry's last days would be readily seen coming - that he would have a slow and steady decline, during which we could comfort him and his sisters, give us the mental time needed to prepare. Suddenly, dozens of spontaneous questions came to me. "Is this how it's going to happen?" "Have I already had my last coherent words with my son?" "Who should we call?" "What do I say to the girls?" "Should we try to get help or let this take its course?" "Do we go to Hopkins or Washington County?"

During this episode, the girls came home from dinner to find us in tears and looking completely frightened. We've had discussions with them about things, but this caught everyone off guard. Thank goodness for Miss Lindsey - she was like a third, very stable parent to the girls while Tara and I sorted through the myriad emotions and decisions we were faced with.

We decided to head to Hopkins directly. We packed up the car, placed a couple of phone calls to the doctors and gave Henry some anti-nausea medication. The Hospice nurse had responded to my earlier call and was there to help us with the medicine. Upon heading out, Henry's symptoms began to subside, much to our great relief. He began speaking clearly again and looking himself. We left the girls with their grandparents and arrived in the ER about an hour later to find our oncologist waiting for us.

The comfort that Tara and I feel in our oncologist's presence is palpable. In tough situations, he is empathetic, knowledgeable and balanced. This evening, his being there ensured us of not only an effective, but brief stay. He sat with us, discussed options, played with Henry and read the CT scan once it came back. One of Henry's oncology nurses came down from the floor to visit with a coloring book and a sweet note. The child life staff member came to bring him toys.

The news from the CT scan was different than we expected. We expected this all to be pressure related from a growing tumor site. Instead we discovered that Henry had a small hemorrhage in his brain, likely as a result of the weak vessels the tumor creates as it grows. He had complained of a intermittent headache all day today in roughly the same spot - the right front of his brain.

We feel like we dodged a major bullet last night. There's nothing preventing this from happening again. There's nothing to say that it won't be worse. Or that it won't happen again. We forced to accept that any day may be the day, any hour the hour. In my head, I've imagined us all being at home around him, holding him, showing that we love him, talking about good times. I need to let it go. This is not about a romantic memory that we can hold on to forever. This is about making each moment count, making each minute one that is infused with love. If we can do this, it will matter less how or when.

So we wake up this morning, grateful for another day. Grateful for another smile, another laugh, just a little more Henry to be experienced. He spoke lovingly to his sisters and Grandmother on the phone this morning. He's watching his TV shows and eating scrambled eggs, with "just a little melted cheese and a little salt." Tara and I are tired, but not really caring much about it and are looking forward to reuniting with the girls and a holiday at home with our family.

16 comments:

Anonymous said...

I constantly think about all of you especially during this holiday season. I am so sorry for the setback in Henry and hope that you have many, many more days with him. You are a very strong family and are so full of love for each other. You guys inspire me and I wish all of you the very best Holiday season.

Tanya Farris & family.

Anonymous said...

I am so sorry to hear this news this morning. Although grateful for the fact that Henry is home and comfortable with you now. Your family is in our thoughts as well and we hope for you a peaceful and joyous holiday. You truly are an inspiration to those of us who follow Henry's challenge. Know that you are surrounded by love.
Jen

Steph said...

Constantly holding you all in my thoughts and prayers. I shed some tears for you all as well.

Hugs,
Steph
Asher's mom

Anonymous said...

I think of your family constantly and keep you in my prayers. Glad to hear that Henry is at home for Christmas eve. Henry, you look so handsome in that chef's hat. Make some goodies for Santa.

Terra

Anonymous said...

Bryan, Tara and kids,
As we celebrate we will think of your wonderful and loving family and our joy of being a distant part of your journey. We wish you joy and peace.
Love
Val and Linda

rlbates said...

Thankful that you have another day (or two or more).

Anonymous said...

Schecks, am happy that Henry is back home with his family. Sounds like you have the best medical team surrounding you, what a blessing. The krause house sends their love

Ali said...

Sounds like a tough night. I hope that the rest of your holiday is quiet and enjoyable.

Anonymous said...

Merry Christmas! I love this picture. Hope yall have a wonderful day Thursday.
Hugs and Kisses,
Susan Peeples Vallotton

Michelle said...

Praying in earnest! Have a wonderful Christmas day!!!
Michelle in VT

ms,t said...

I am so thankful that little H is now home and loving his family and friends. After all that he's been through...To me, its nothing but a MIRACLE. I have no other words to explain his transformation.

I feel so blessed to have gotten to know little Henry as well as your family. Thank you for sharing your lives with me.

Merry Christmas to all.

Anonymous said...

May God continue to bless you with his love and strength as you go through the challenges with little Henry. My prayers are with you.

Merry Christmas to all of you.

Joce W.

Anonymous said...

My heart sank as I read your post this evening. I am so sorry that you had to be at the ER on Christmas Eve, but it continues to sound like the JH staff are providing wonderful care to Henry and you all as well. We are happy that you were able to be home for Christmas Day. Henry knows without a doubt how much he is loved.

Love, Julie, Brad, Patrick, Andrew and Samantha

The Hebbs said...

We were so sorry to hear of what happened, but so very happy to hear that Henry is feeling better so quickly. He is quite the life soldier.

We are truly thankful for you sharing your journey and the lesson your entire family has taught us - to love deeply and take in every moment.

Anonymous said...

Dear Bryan and Tara,
Looking at the little Pillsbury doughboy you would never guess that you three just had another bump in the road. I am so glad that it didn't turn out any worse and that you all were able to be together as a family on Christmas. There isn't a day that goes by that I'm not thinking about all of you and wondering how you all are doing. Please enjoy the rest of your holiday and may it be the best one yet!! Merry Christmas.
Love,
Gina,Craig,Carinna and Corey Householder

Anonymous said...

Hi Bryan & Tara,
I was a couple days behind in my Henry Blog reading, and read 12/26 before this post. I'm so thankful that everything is better today. This post was so shocking and sad (i'm crying) and I was grateful to be able to go back and read 12/26 again and know that you all had a lovely Christmas. I think of you all often - please know you are always in my thoughts & prayers.
--Evonne