Thursday, March 27, 2008

I write this post as my teeth are gritted tightly together. I looked down to find our adorable Tod with my computer power cord once again chomped in half. I have been so careful to put it away every time I am not using the computer. Well this time I WAS using the computer, and I looked down to see the wire in half in his mouth. Took him about 30 seconds. I was so mad, and believe me, he knew it! I have only had this last one for about 2 weeks. If anyone knows how to splice these together, let me know. I have already checked with our local computer store, and they don't do it. It's a wire within a wire, and Dave is figuring that out right now as he is taking it apart in an attempt to put it back together. I now have three useless cords here, and once again no way to use this computer until I buy another. GRRRRRR....

But, that's not what this post is about. This post is about what a GREAT day we had today. We went into clinic this morning to get Hannah's blood levels checked. Her levels were basically almost identical from last month, a couple down just a bit. I was concerned, but the doctors weren't. They say her bone marrow is suppressed from all of the chemo, and it takes long time to come up, and that she may always be a bit low. Here are her numbers:

White blood count 2.88 Normal 5.0-13.0
Red blood count 3.69 Normal 3.90-5.30
Hemoglobin 12.2 Normal 11.5-16.0
Platelets 237,000 Normal 140-400
ANC 1840 Considered at risk under 1500

Here is Hannah at clinic today drawing a road for her toy car she was playing with while waiting for the doctor to come in. So these counts are considered acceptable at this stage of the game. There is no reason to try and raise them, just have to wait. Everything else checked out fine. They told us we could go ahead and take her port out! Typical wait time is 6 months post treatment, but they told us that if Hannah would recur, she would need a different type of port and they couldn't use the one she already has for the new kind of chemo drugs, so we might as well take it out. There words were "Hannah's prognosis is very good and you can have the port removed whenever you want to." Aren't those GREAT words???? We're going to call and get it scheduled with the doctor that put it in at Stony Brook Hospital to remove it. I thought she would be excited, but she was crying, since #1 it requires surgery and #2 she realizes that for all further MRI's she has to get stuck for an IV for the contrast dye. Which is worse, port access or needle stick? I guess all needles are not a happy scenario as far as Hannah is concerned.

*****UPDATE-my wonderful husband has just successfully spliced the cord together and has saved Tod's life*****

So tomorrow I will check on scheduling the port removal. This is probably the only doctor whose name Dave and I can not remember, so I have to look it up.

Hannah also made a special delivery to Childlife today. She delivered some of her favorite craft items-foam sticker projects. Last time we were at Michael's she wanted to buy these since she said "when I was up on the 4th floor (inpatient) I was bored sometimes and would have liked these to play with so maybe the other kids will like them." Here is Hannah delivering her goodies to Faye. We stopped at a couple places on the way home to check for Wii's, but nothing yet. Next week the plan is to talk to the manager of a couple stores here in town to see if they would be willing to notify us when they get their next shipment. If that doesn't work, we may contact Nintendo directly, as Josephine suggested, to see if they would help.

We noticed today as we got out of the elevator that Hannah's picture was on the wall! They have pictures of the hemotology/oncology patients and rotate them every once in a while. I know you can't see the picture very well, but here is a photo of Hannah with the photo of Hannah! In the picture, she was sitting down in front of a very colorful fish wall, it's a nice photo. I was surprised to see how much her hair has grown since that picture was taken, I think it was from last month.

Wonderful day for us!! As I sign off, I wanted to mention our dear friend Sister Anne. She was injured on Monday by a car, and is now in a rehabilitation hospital with a broken leg. We pray that her recovery is swift and she is as pain free as she can be right now! We hope you are back in Cutchogue with us very soon! Please join us in keeping her in your prayers.

xoxo Kim

8 comments:

Anonymous said...

So happy to hear good news..Port coming out, counts good....but the dog is in trouble!!! LOL
I pray the good days continue you certainly deserve it! I hope you find a WII soon! Team Henry donated 11 to Riley and I know it took a lot of effort to get them but if everyone keeps an eye out you'll be Wii-ing before you know it. I'll let you know if I see one in Columbus!
Thank you for being part of team unite! I hope all of Team hannah will join us in our calls. Go to http://heidster.com/team_unite/ it is easy and free...just a few calls a week and I know we will facilitate change!!! Take care and I hope your dog gets over his craving for electrical cords! My sister has a scare from doing just that when she was a baby....I am glad he didn't get shocked but if he did maybe he'd stop???!!!! My best to you for continued good days!~

Anonymous said...

Ports to come out cords chewed just another "nomal" day. Isn't there some anti nail biting nail polish you can put on the cord. Other things to put on the cord, cayenne pepper and lemon juice...also paprika is supposed to work. At this point I'm sure the cayenne may be more appealing.

Anonymous said...

Glad the port is coming out, glad the cord is working again. I am very happy for you, Hannah. What a great idea about the foam stickers. My little boy (Stewart is 3) loves to make pictures with them. I am sure the other kids will enjoy them.

I am thrilled with all the good news you've received.

Todd Wilkinson

Anonymous said...

What wonderful news! SOOOOOO Happy for all of you. I checked our Target today and no Wiis.

I know I don't have to remind you to enjoy the weekend!

All the best-

Sarah

Anonymous said...

I've been checking in on you and wanted to send my love and continued prayers....to all of you and Tod! ha! ha!

Your news is so good and I am so happy to see those smiles, that hair, and those great counts!

We love you lots and lots!

Randy, Angela, Logan and Noah

Anonymous said...

YAY! More wonderful news. And the foam stickers are such a great idea! You are so thoughtful, Hannah. Sorry that Tod is in trouble again. We have the same problem with Flint at our house, except he gets in trouble for chewing on SHOES!!

So happy you get to have your port taken out! Stay healthy and strong!

The Reyes Family

Anonymous said...

I found your website from another child's website. It is so good to see how well Hannah is doing! She is adorable! That is encouraging to us parents who also have kids with brain tumors! They must be confident to have her port removed. My Kelly is fighting glioblastoma and right now is doing well. By the way, my kids' favorite place in the world to visit is New York! My family is from there and we visit NYC and upstate (Adirondack) as much as we can. We live in California, so it nice to get back to New York.
You might want to try Craig's List for Wii. Our neurosurgeon's office found one there for Kelly when all the stores were sold out.
I am so glad to hear about your good day and pray for many more to come!
Kathy, mom of Kelly, GBM
http://thelaudes.blogspot.com
kathylaude@cox.net

Anonymous said...

Oh Boy, little Tod is in big trouble at the Prokop household, for sure! If Mom sends me the other two "chewed" cords, I can give them to my brother-in-law, a retired MIT electrical engineering professor, who, I am sure can fix them in no time and Mom can keep them for the next time Tod chews through the cord although, for Tod's sake, he better not (but just in case..).

Our Dear Hannah, we are so happy and thankful that all the news is so wonderful. You have hated that Port and it must make you happy to have it taken out. Hannah, we bet you are thrilled to be back with your friends at school.

Kim, thank you for forwarding the message from your friend Mimi, describing Easter without her beloved Julian. We felt Mimi's overwheming sadness and said a prayer for both Mimi and Julian.

We're off to London this week to visit our daughter and her family. Our Tara has two little boys and we are excited to see them again.
With Our Love, The Boston Griffins