Amazing

These last two weeks I have been constantly amazed by the outpouring of concern and love for Addison. I am astounded by the many comments and genuine concern that we have received from people who have never met Addison. It is reassuring to know that many, many prayers are being said on her behalf and that so many loving people are keeping her in their thoughts.

I have been pretty good about being strong, well except on her procedure day but isn't that a given, through all of the appointments and discussions. But then when people show so much concern and love for Addison I just can' t suck it up anymore. Today was one of those break down days. I went to the post office and found a package from my childhood friend Gena's mom Pat. Inside the package I found two tiny "wee blocks" quilt blocks Pat had made, she's a fabulous quilter, and such a kind touching note.

"...here is my long distance plan to let you know our prayers and positive thoughts are with you. Each week you will receive a "wee" block in the mail to bring cheer and smiles. At the end of 18 weeks of successful chemo there will be 18 "wee" blocks hanging on the wall...mail them back to me and I will "build" a celebration quilt for Addison not to remember the bad days but all the love and good days."

So there I was standing in the Post Office crying. Needless to say I whipped on my sunglasses when a guy came next to me to sort through his mail. Thank you Pat for brightening my day a little more. We can't wait to see the next "wee" block.

I just want to say thank you to the many, many individuals who have expressed concern and love for Addison and our family. It helps us feel like we are not going through this alone.

Thank you.

Bettie's Gone Squishy!

We have good, good news today. Not only is Addison acting like her normal smiley self but Bettie has gone soft! Grandma Cec noticed today, while tickling Addison's face, Bettie seemed softer. Sure enough I felt it and it was soft. Before it was very easy to tell where Addison's cheek stoped and Bettie began. It was like there was a golfball under the skin and the border was very defined. Now in front of her ear it is pretty dang squishy. However, behind her ear is still really well defined and not as soft. Maybe next week behind the ear will squish too. Exciting development...keep your fingers crossed for more squishiness!

Join Team Addison

Blast Bettie 2010

Team Addison

Bettie...who the heck is Bettie? Well you've already met her you just didn't know it. Bettie is Addison's bump (parotid hemangioma) affectionately named by her Aunt Summer. Addison's Grandma Cec says Bettie the Bump is a way better name then Tina the Tumor. I would have to agree. So this is the official announcement of Bettie. Join Team Addison and watch the sidebar pictures and join us in saying good riddance to Bettie as we Blast her away each week.

2nd Round

We went down Thursday to Milwaukee for Addison's second round of chemo and a hip ultrasound. The ultrasound came out perfect, she had to have it to make sure her hips were okay after being breech. And we got some additonal great news that the tumor has regressed slightly. We can't see this visually but by physically measuring the hemangioma and comparing it to last weeks measurements they can tell it has shrunk. We are very thankful that it has not only stopped growing but has started to go away. We are looking forward to next week as that is generally the time frame in which you start to see visual changes. Her second round of chemo went well and her PICC line looks great. She did get a small skin tear when they took off her dressing so we hope that heals well and next week the dressing will come off a bit smoother.

What a tough little bugger. She was smiling and cooing while the nurses took her blood pressure.

Today, she has been sleeping a lot and is pretty uncomfortable when awake. Last week it took two days to hit her and this week it only took one day. Hopefully this means she will be feeling better a lot faster this week. The Dr. also switched around some of her meds to help with the side effects. He thinks her anti constipation meds were giving her stomach cramps which might have been what make her so uncomfortable last week. He took her off that med completley and told us to use prune juice if she seemed constipated. He also said we didn't need to give her the antibiotic which prevents against pneumonia. The antibiotic tasted terrible and we tried everything to get her to take it last week. He said he's not that worried about her not having it so for now we'll hold off on it. She's been having really bad gas which seems to hurt her so he said we should give her Mylicon drops a couple of times a day to relieve this. Additionally we felt her oxycodone given for pain was making her wired so Dr. Kelly discontinued that and said to give her children's Tylenol for the pain and gave us a Rx for morphine if the Tylenol doesn't work. We have to be really careful with the Tylenol though because it masks fever. And a fever is a sign that her PICC line is infected. So we'll use it with caution. We'll see how it goes this week. Her current Meds:

Zantac twice a day to decrease the acid reflux

Tylenol as needed for pain, Morphine if Tylenol doesn't work

Prune juice as needed for constipation

Outside of Children's Hospital in Milwaukee. It's cold here!

I've been continueing to do research on hemangiomas and Vincristine (chemo med) and I am very happy with the results. Every research paper, study, etc. I have read I always look to see where it was done and who conducted it. The majority of the time (here in the US) Dr. Drolet and Dr. Kelly, Addison's Dr's, names appear. It just reconfirms in my mind that this is the reason we were sent to Sturgeon Bay, for Addison to be able to be treated by the top Dr's in the hemangioma field.

PICC Line

Here are pictures showing what her hemangioma looks like on day two of treatment.She was suprisingly happy this day. We were told most babies don't feel well for the first two days after treatment. This day she was all smiles and cooing a lot, very good for our hearts.
This is the PICC line. The black ties are sutures holding it down in her arm. This is so the line can't get pulled out. The tubing going off to the left is capped off at the end. This is the port we have to flush once a day and how they give her chemo.
We ace bandage her PICC to her arm so she can't pull it and so it's protected from germs.

Ace bandages must taste good to a two month old!

Before Pictures

Here are pictures of Addison the week that we started treatment. When these were taken she had not yet started treatment. You can barley see any black inside of her ear. This shows how much her ear canal is being compressed by the hemangioma. Once the hemangioma goes down her ear canal should return to normal.
The red superficial hemangioma is relativley flat. This is good as most superficial hemangiomas really "puff" up and get thick.

Profile of hemangioma. Notice how little of her ear you can see. It is being blocked by the hamangioma. You can also see the blue coloring starting on the bump.