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Sunday, April 18, 2010

Round 10

I can hardly believe that she had her tenth dose on Friday. I actually thought it was her ninth but then I looked at her wall and sure enough there were nine little quilt blocks representing the nine weeks that have gone by. I had to go look at the calendar to make sure it really was the tenth dose. The day we decided to undertake this treatment the tenth dose looked a million miles away and now here we are just two doses away from the end of her trial! After the twelfth dose we will begin to go every other week and if it holds off the growth then we will try and go every three and then just once a month. We will keep spacing treatments out as long as regrowth doesn't occur. Cross your fingers!

This week Addison's arm, under the dressing, looks much better. It's hardly red and it's just a bit dry. They repositioned the dressing to see if they can get part of the skin to heal up in the open air and next week will reposition it again to heal up another part. On Monday and Wednesday the home health care nurse came and put a new dressing on and applied a steroid. The steroid made all the difference in the world.

Friday, April 9, 2010

MRI Results

This is the MRI taken the day Addison had all of her procedures and the first day of her Vincristine dose. The white mass on the left side of her face is the hemangioma (the white part up top is her brain). From this slice you can tell that only about one third showed on the outside and two-thirds of the mass was on the inside. Notice how close to her throat it encroaches. And this little beauty was taken last week, her seventh dose of Vincristine. See the mass, it's super small! From all the MRI slices they are able to compose a 3-D model of the mass and measure its volume. The mass before was 79.3 cc to 47.4cc. That's over 50% decrease! To say the least we are super, super excited. But I think the pictures say it better than any words we could write.
So kiss Bettie goodbye, she's leaving and is not coming back! Our trial still has four more doses of Vincristine and then they'll decide if they want to keep her on weekly doses or try to space them out every other week and see if they can hold off the growth.
Addison's arm where her PICC line is at is a little irritated. It's red, bumpy, and flaky. We think it's a result of an alcohol based cleanser they used while she was admitted for RSV. I really wish I hadn't left to pack my stuff up to go home. I came back into the room right after they had cleaned her arm with it. That was two weeks ago and this last Wed. I noticed her skin was really dry around the dressing. I put Aquaphor on it and the next morning I noticed the Aquaphor had made the dressing pull up. I had the home health care nurses come over and change her dressing and we saw how irritaed her skin was underneath. When they pulled the dressing off today the part that was irritated on Wed had healed and now there is a new area of irritation and they whole area under the dressing is inflammed. They put a topical steroid on her skin and we will put more on it on Mon. when we have the dressing changed again. They say it may take some time but everything should heal up fine. These kids' skin is so sensative that Renee (our Chemo nurse who takes care of all the hemangioma kids on Vincristine) has developed a specific way to dress their PICC lines so that their skin doesn't break down. Her method doesn't follow protocol so everytime someone else does it they want to put cleansers and antibacterial agents on and it's these products that break their skin down. So if the parents aren't there everytime the dressing is messed with, when someone besides Renee changes it, and watching like a hawk it is almost asured that it will be done wrong. This is why we love Renee, she's found ways to protect the kids' skin so they don't have to deal with infections etc. They have enough to deal with already. Addison's arm will heal up, it'll just take awhile. Till next week!

Saturday, April 3, 2010

Round 7 and Catching Up

This was our world for four days. Well it's been awhile and we have a few very good excuses. Three weeks ago, on a Monday, Addison came down with a cold. That Friday we went down to Children's for her normal chemo appointment. Dr. Kelly saw her and said if she kept not eating, she couldn't breath through her nose so she pretty much stopped eating, or her cough got worse, which at the time was very minimal, we were to call the Hot unit. Before we drove home they gave her an IV to help her along and swabbed her nose to make sure her "cold" wasn't RSV. That night, back at home, sure enough the little bugger didn't eat again. The next morning the same thing so I called into the hot unit and they told me to take her to the ER to get some more IV fluids. We had a wonderful nurse there who treated her great and after a couple of hours we were back at home. They also set up for a home health care nurse to come to the house Sat and Sun to set up an IV we were to hook her up to each night for the two days.

Since her cold started I had been keeping a vaporizer and humidifier on in her room while she slept. We were also suctioning out her nose with this awesome automatic nose sucker one of our chemo nurses turned us onto. All week she had been coughing so hard she would gag and then puke but starting Friday night it really started to ramp up. At one point she coughed for two hours straight and of course ended with puking. The poor little thing's eyes would roll back in her head she was so wore out from all the coughing and just couldn't stop. I took her into a steamy bathroom so many times on Sunday that I was afraid I would run the hot water heat out. The steam helped after about 20min. All weekend I kept calling the hot unit giving them her symptoms and asking if there was anything else I could do. It was very frustrating. I kept asking for help and no one would give me any assistance. It just didn't seem like an average cold to my Mommy instincts. Finally, on Sunday night at 10pm I decided to take her into the ER. They immediately brought in the Dr. which I knew wasn't a good sign. They put her on oxygen, her levels were super low, they said her lips were starting to turn blue and she was really struggling to breath, suctioned her lungs for the first time and took some labs. They ran another chest e-ray which showed she had drastically worsened just overnight. On Saturday her chest x-ray had been clear and now she had pneumonia. Thankfully our ER Dr. was smart enough to counsel with Children's Hospital to see what they wanted to do. I was given the option to have her admitted to the hospital in Green Bay or Children's. There wasn't an option in mymind and I said she was going to Children's. So at 2am the ambulance arrived from Milwaukee and we made
Getting better. At first all she did was sleep.

our way down to Children's. Ryan was underway in Duluth, MN so I drove behind the ambulance. The EMT's said they weren't going to go all lights and sirens but let me tell ya, I was going 80mph and couldn't keep up with them. Maybe they didn't use all the bells and whistles but they sure didn't go the speed limit either. By the time I arrived at the hospital they had already unloaded her and the Dr's had done their evaluation.

This little Monkey got very, very good at watching her toons. They had a ton of kid channels and Addison soaked them up. She especially liked the Baby Einstein movies they had.

Addison stayed a total of four days and it wasn't a fun experience for any of us. Every day, multiple times, they shoved a thin catheter down her nose and into her lungs where they suctioned out mucus. RSV is known for it's plethora of mucus that's sticky and stringy. She also ended up on multiple saline breathing treatments to help break everything up in her lungs. After four day and way too many suctions they discharged
Yeah, the oxygen came off! Nurse Sue came up with these ingenious little pads to put on her cheeks. That way as they were pulling the oxygen on and off trying to get her to breath on her own the tape wouldn't irritate her face.

her. The next day we were in the ER because her PICC line wouldn't flush. They put an anti-clotting agent in her line and let it set for an hour. They then pushed everything through and voila the line cleared. At one point I was very scared that we were going to end up back a Children's having her line pulled and replaced. But luckily Heavenly Father knew I couldn't handle anymore situations for the week. During a total of seven days we were either in the ER, had a home health care nurse at the house, or where in the hospital. Yikes, thank goodness that week is over!

On a good note, as you can see Bettie shrank significantly while we were in the hospital. I joke that it must have just been full of snot and they sucked it all out. All that is left is a lump under her chin and behind her ear. Most people now just think she has chubby cheeks.
Things always get better when our Dad comes home.

The whole week was super stressful but going through it made me very grateful for many things.

I am grateful for such a wonderful captain on Ryan's boat, they let him off every Friday when they are in port so he can go with us to Milwaukee for Chemo and they don't even charge him leave. They also let him come home not only when I was having gallbladder attacks and subsequent surgery but this time also when Addison was hospitalized.

I am grateful for medical professionals who have dedicated their lives to learning and not only treat Addison but care for her as well.
This is Addison's day nurse Sue. She was wonderful and cared for Addison so compassionately, even during procedures which weren't happy to endure.

I am grateful to live in Sturgeon Bay and to be so near a hospital that specializes in hemangiomas (one of the residents said to us that you want to be either in Milwaukee at Children's or San Francisco if you need treatment for a hemangioma as these are the premier treatment centers in the states. Oh, I also overheard that Children's is #3 in the world for Children's hospitals!)

I am grateful for so many friends and family who are thinking and praying for a great outcome for Addison. Your thoughts, prayers, and acts of kindness have touched us deeply and do not go unnoticed. We often reflect and are amazed at the outpouring of love we have received over the last few months.

I am grateful for one tough little girl who amazingly smiles through every situation she is faced with, good and bad. And loves us unconditionally every day.

And I am very, very grateful for a loving Heavenly Father who knows exactly what we can handle and what we need. And for a Savior who while atoning for our sins also felt the agony of our every pain and sorrow. What a blessing and comfort it is to me to know that he, and him alone, is the ONLY person who knows EXACTLY what we are feeling.

So while this weeks was one hell of a week it has made me realize this chemo thing really isn't that bad. And average life, after this is all over, is going to be a piece of cake.