Goodbye to an old friend, clean scans, and Ava update

No, this isn't a picture of our pet mouse that passed away. Today we said goodbye to Linda's friend the PowerPort (it was under her skin below her collarbone and directly into a major vein to administer chemo or draw blood). It served her well for over a year and saved her from numerous IV pokes. When it was put in, we were about a week after diagnosis and plenty freaked out. Linda had to be put under at that time and they carefully monitored Ava while Linda was under anesthesia (I still remember seeing Cricket's heartbeat written in ink on Linda's tummy where they could hear it). Today it was removed in a procedure room and Linda was talking during the procedure. The Physician's Assistant mentioned she still checks the blog (sometimes I wonder if it is still read!) and I hadn't updated it in some time so here we go!

Linda had her bone and CAT scans a few weeks ago and it was ALL CLEAR!!! This is great news as we made it through year one with no sign of cancer. She is feeling good but still a bit tired/fatigued. She had gone back to work full time (unfortunately, they wouldn't let her go part time) and it was too much so she is on leave right now. This allows her to focus on her nutrition and exercise which is basically the main points of her recurrence prevention plan.

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Ava is doing great. We actually took the family down to California to see some friends, Linda's son Brian (on an internship), and watch the Beavers play California. She did well on the 8+ hour trip. For Halloween, she was Horton the elephant! We took her trick-or-treating at about 6 houses which was fun.

Ava is crawling proficiently and able to walk while holding on to things. Her adjusted one year birthday (based on her original due date) will be December 7th. She had another checkup with a pediatric ophthalmologist who said her eyes looked great and still no concerns. We'll continue to monitor them annually for awhile to be sure since she is still at higher risk for eye issues.

Bath time in the laundry room sink:

Ava made it thru over a half-dozen colds in daycare (only one or two mild fevers) but that got old for all of us and since Linda is home on leave we bailed on daycare for awhile. It is nice not to have to go thru that daycare grind right now, especially with H1N1 around. We did get our H1N1 shots though.

Cousin Mason: Ava's cousin Mason has been in the hospital working thru various issues for over a month now (mostly related to his lungs), although we're all hoping he is on the upswing. His mommy and daddy are to be commended for the persistence and energy they put forth to ensure their amazing little boy continues to have the best care. After spending 2.5 months doing the hospital drill for our child, we have a definite appreciation for others who go thru that. You can catch up with Mason's story on his blog. Our thoughts and prayers go out to Mason and his family that he can go back home soon!

In closing, I'm attaching some photos from the Children's Miracle Network fundraiser we were hosted at. Thank you to all those who contributed to this charity! Credit to Sacred Heart Medical Center Foundation photographer Deborah Weese for these photos.

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Thanking the donors before our video was shown:

Staramama (Grandmother in Slovenian) and Ava:

The guest of honor herself:

Happy Thanksgiving!!!

Rob.

Children's Miracle Network Video of Ava

We were honored that Ava was chosen as the "miracle" for the Children's Miracle Network fundraiser in Eugene last week. It was a silent auction, dinner, then live auction to raise money for the wonderful things that CMN does.

Some of Ava's doctors and nurses were there to celebrate with us, as well as some family and friends.

Linda gave a beautiful thank you speech to the group (Ava and I were with her) and then the CMN group showed a video they had put together with our pictures and story. Thanks goes to friend of CMN Nate Porter for the video itself.

I posted a copy of the video on youtube, please check it out when you get a chance:

http://www.youtube.com/watch?v=tgrqJBJvOC8

Rob.

1 Year Old, giving back, and good appointments

Ava turned one year old on 9/9/09! We had a wonderful party for her that weekend and enjoyed seeing many of you there. Thank you for coming to celebrate her and thank you for the nice wishes from those who couldn't make it! In lieu of gifts, people donated over $300 toward Children's Miracle Network - thank you!!!!

Linda returned to work full time on September 1st, and Ava started daycare at Beaver Beginnings on OSU Campus so we have been quite busy adjusting to all that. Ava has had 4+ colds since starting daycare (they seem to run from one to another) but only one of them was nasty enough to cause a fever, which she recovered nicely from. Linda has been pretty exhausted from the mental and physical toll of work, so we're looking into making some adjustments on that end. I think she has been on adrenaline for the past year and now her body is demanding some relief. As I've mentioned before, her treatment now is ensuring she eats right and exercises, as that has shown to prevent recurrence in her type of cancer by an additional ~40%. So, our top priority is ensuring she has the time and energy for this.

Ava is right on track for her adjusted age of 9+ months old. She is crawling quite proficiently and pulling up on objects to stand, and talking what sounds like a Scandinavian language to us! She has two teeth and is in her own room since her birthday too.

Linda's checkup with her oncologist and mammogram both looked good, so we are very thankful that she continues to do well, other than being tired. Linda's friends put on a nice celebration dessert for her, which was very thoughtful and fun to see some friends she hadn't seen in some time.

Linda was asked to speak at a benefit dinner for radiation equipment that was last night. Called the Physicians Gourmet Dinner, it is a formal fundraiser where the doctors share their favorite dinner dishes with donors. We donned our formal wear and Linda gave an emotional 10 minute speech to the crowd of ~350 sharing her story and how happy we were with the team, and how the new radiation equipment will positively impact future cancer patients.

We will also be hosted at the annual Children's Miracle Network fundraiser in Eugene in a couple weeks, where they are pulling together a short video of our journey. Our family will be the focus family for the evening and we will be able to bring Ava with us. It is nice to be able to help some of the groups that provided help to us when we needed it.

Rob.

Anniversary, visit from our Japanese friends, Waterbabies, and AVA's First Birthday (you are invited)!

We've had some fun in the past month as the summer is winding down.

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Linda and I celebrated our 7th wedding anniversary at the end of July in Neskowin (a cute little beach town). We had to bring the baby with us, of course.... Little Cricket loves the sand and the beach. Our wedding anniversary last year was just over a week after Linda's cancer diagnosis, so was very tough. This one was much more relaxed and enjoyable, as we celebrated putting the first year behind us post-cancer!

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Family photo in foggy Neskowin:

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Daddy and Ava at Road's End in Lincoln City:

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One of my best friends Akira, and his family from Japan came to visit us in Corvallis for a few days. We have visited Akira's family in Japan and now they were able to come back to Corvallis after about 30 years. He is now an oncologist in Japan and we visited our old school we went to together. It was a great visit and fun to share our newest addition with his wonderful family. Akira and Rob in front of their old elementary school:

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We took our Japanese friends to the beach and I was able to snap this fun shot of Ava playing on the beach. It's one of my favorite pictures of her!

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Linda, Ava, and I went to a cancer survivors retreat at Suttle Lake in central Oregon (Soaring Spirits). Our friends Sherry and Rick were there and treated us to a boat ride on Suttle Lake. Sherry is our friend who put together a beautiful video of our journey. I haven't found a way to share the video but if you stop by, request to see it since it is amazing. Sherry, Rick, and Ava on the boat:

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Ava and Linda did a waterbabies class. Ava LOVES the water and did quite well for her age. She even mastered some underwater dips, as shown in the photo below while she's underwater!

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We had a night at our friends' the DeKam's where Ava got to play with her friend Powell. Powell is about the same age as Ava which is fun. Papa Rob and Papa Kevin with the kids:

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PARTY TIME! It is almost time for Ava's first birthday party!!! She will be one year old on 9/9/09. We're hosting a Birthday BBQ Bash for her on Saturday, September 12th from 1pm to 4pm. If you can make it, please RSVP via email (robblair3@comcast.net) or phone or flare and let us know. We'd love to have everyone who has supported us through the blog join in the celebration. In lieu of gifts, we'll have a donation box for a few bucks toward Children's Miracle Network.

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Sharing the story: Linda will be speaking at two breast cancer-related events, and our family will be featured at the annual Children's Miracle Network dinner/auction in Eugene this year! It is nice to share our story to help others.

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Rob.

Boise, Montana, a Baptism, and more

Well, we made it! We traveled to Boise, then Legendary Lodge Montana (near Missoula), and back. We did a couple stretches of over 8 hours a day in the car with Ava and survived. Actually, she was quite a good traveler, and slept most of the way, only getting fussy after about the 8 hour mark (we were all a bit fussy at that point!).


First we had a great time in Boise seeing Linda's family. Her cousin Becky has a newborn as well, so it was fun to connect with them and Linda's other cousin Susie and her Aunt Marje.

Linda and Baby Ava and Becky and Baby Metolius

Ava at Linda's cousin's Cabin on McCall Lake:























Next we took the long way up to Missoula near Salmon Lake to meet up with my Mom's side of the family. We had a great turn-out, with even Ava's cousin Mason in attendance! Austin was a nice help on the trip with his sister and also had a good time with the cousins.

Here is Austin having too much fun with a Spud Gun:



















Ava in her Montana cowgirl outfit with a scruffy dad:



We were very blessed to be able to get Ava baptized while in Montana. Her cousin (2nd cousin, twice removed for those into genealogy) Archbishop Curtiss baptized her in a beautiful ceremony in a little chapel at Legendary Lodge with only family in attendance. We're so lucky to have her baptized at one of my favorite and most beautiful places in the world.
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Baptized as Godmother Aunt Tina assists:





















Austin and Ava after the Baptism:


























We did see a bear in the campsites, but luckily he avoided us and tried to track down the Californians instead. :)

Ava is 11 months old in one week, which is hard to believe! She was over 17.5 pounds at her last checkup, and still doing wonderfully.

Linda had another checkup with her oncologist and continues to be cancer free. We are so thankful she is doing well. She still has some fatigue, but has been exercising daily.

Cute Baby! Our friend Gail Eby took this lovely photo of Ava that I needed to share:






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. Movie stars: Linda's good friend Sherry Binger made an amazing video of our journey. I'm working on a method to share such a large file size via the Internet with everyone - hopefully I can figure it out in the future.
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Rob.

Finished!!!

Linda completed her final cancer treatments (radiation)! All went well toward the end with a bad sunburn as the worst side effect. She was also pretty tired but seems to regaining energy now. In addition, Ava had a cold a couple weeks ago and she shared that with Mom. But, now all is well, 11 months after we began this crazy, twisting journey. I'm going to try to recap the journey on a future post (in my spare time!).

Linda has done amazingly well through her treatments and has no evidence of cancer which is great news. She will continue to have follow-up checkups every few months. In addition, she will continue to get her bone strengthener every 6 months for another couple years. There continues to be good data on its role in preventing recurrance. At this point, she will continue her "treatment" by eating well and exercising, as these are also helpful for cancer survivors.

Ava is doing great other than her second cold a couple weeks ago. She shows no signs of her prematurity (other than being behind on her development for her true age, but she is tracking at or above her "adjusted age"). She can roll over when she wants to (so much for tummy time) and is sitting mostly unassisted. I think crawling will be in her future sometime over coming months.

Ava's personality continues to be social, and she enjoys seeing friends and meeting new people. Even in the lobby of the medical offices, she would smile and engage with strangers. She is fun to take places and we have even ventured out to nice restaurants with her in tow (but ready to move fast once she gets tired or cranky!).
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Ava has many angels in her life but some of the most special are those who have shared their breast milk with her. One of these moms, Shelly, is providing for her own twins, while helping Ava out immensely as her main milk provider! Ava's Angel Shelly is shown below.

Coming up is a road trip to Boise and Montana to see Linda's family and my family. The long days on the road should prove to be quite the adventure but it will be worth it!

Overall, given all the obstacles and twists and turns over the past year, we feel extremely blessed to be where we are, and to have so many wonderful friends and family supporting us.
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Rob.

Happy 9 Month Birthday Cricket!

Cricket is 9 Month's old today! She is doing wonderful and watched big bro' Austin's 8th Grade "Promotion" ceremony tonight. She'll go about 10 hours between her night-time feedings (although doesn't sleep this whole time). But, it is nice to get more sleep than we were previously! Ava went swimming in our friend's pool last week. She really loves the water and likes to kick and try to swim! We also had out first overnight at our friend's house near Seaside and Ava did pretty well with that - was a bit fussy at night but overall it went okay! We're going to Boise then Montana in another month, so that will be exciting!

Linda is doing quite well on the last leg of her journey. She has 8 more radiation appointments. Just this week, and next week. She is still tired from time to time, and has what looks like a good sunburn from the radiation (along with the itchy sensation), but is otherwise doing great. She gets her last Zometa (bone strengthener) infusion tomorrow until 6 months from now. She may get her infusion port out in another couple months!

It is nice to be into summer!

Rob.

Rads Week 3

We entered Week 3 of Radiation ("Rads") this week. So far, so good. It is a bit unnerving to sit under a big MRI looking machine and get zapped, but Linda seems to be managing it well. She is a bit tired, but likely that's from all she has been through. Her skin is so far doing well but we keep a good amount of Aloe on it. She got her tumor markers checked (blood test that should correlate with any tumor activity) and they were good. So, we continue with NED (no evidence of disease) which is where we want to be! Some people have asked why we need to continue treatment if the cancer is gone. Even though there is no evidence of cancer after the chemo and surgery, there still may be microscopic remnants in the local area of initial tumors (Lymph nodes and breast) so they zap those areas with radiation. It is quite effective and the side effects now are minimal (the doses are much better focused and lower than those of years past).
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Linda has started to do some light running again after just focusing on walking thru her other treatments. She is also enjoying her hair!

Ava is doing quite well! She had her checkup from the home nurse and is tracking at or above her adjusted age of 5 months. She has no signs of Cerebral Palsy which is one more thing they check for since preemies are more apt to have that (I try not to read too many statistics on her since we'd constantly be checking her for all kinds of things). Ava seems to be a happy baby, and when she is not, it is usually solved by food, diaper change, sleep, or attention. Like her mom, she is very social and enjoys others!

Linda, Ava, and I did the Relay for Life at Oregon State last weekend. We did the "survivor lap" initially and then Linda also walked with her infusion nurses for awhile. It was a powerful event, to have hundreds of people applauding us as we walked the circuit (I got a special purple "caregiver" sash which was quite stylish, and complimented Linda's "Survivor" shirt). Linda and Ava are both survivors of breast cancer, and it is nice to celebrate that.

Rob.

Doctors, Tattoos and Radiation

Doctors appointments seem to be the norm, these days.... At least one but often more per week. Ava had her eye exam a couple weeks ago. We went to a pediatric opthalmologist that comes to Albany from OHSU Casey Eye Institute. Ava's eyes looked great which was a nice relief. We thought they were probably okay they way she can spot us from afar, but sometimes there can be hidden issues. Extreme preemies are more likely to have problems so they will continue to monitor her every six months. There was no sign of ROP (retinopathy of prematurity) and the Doctor said he couldn't even tell she was a preemie from her eyes! The nurse commented she wished all babies Ava's age were so cooperative.

Ava had her vaccinations, last RSV shot, and a checkup from the pediatrician. She continues to do great and is over 15 pounds now! Our nurse told us to work more on her core muscles but she just does not like her tummy time anymore (in the NICU, she used to breathe better on her tummy but now she does not like it whatsoever!).

We've gone from paranoid parents (trying to avoid colds) to cautious parents. We've been getting out and about and able to visit our friends with kids again, which is nice!

Linda got her radiation tattoos (very small marks they use to line up the radiation - look like a small freckle). We met again with the radiation oncologist a couple weeks ago and the plan is the same - 6.5 weeks of radiation (5.5 weeks with a 1 week "boost" at the end). The research is also still showing that Linda would benefit from radiation in the lymph nodes area so she will get that too as part of the deal (there is/was some debate on this, but some newer research indicates it is helpful).

Her first day will be tomorrow (5/5) and continue thru the third week in June. Treatments are Monday thru Friday and it looks like we'll have a morning treatment time. The radiation appointment should only be about 30 minutes so that is nice. Radiation doesn't seem so scary after chemo, preemie babies, surgeries, etc. It feels to us like the last leg of a long marathon. But, there are still risks and side effects (like everything), so it isn't exactly a cupcake treatment either. We're assured that radiation is much safer today than long ago, and side effects should be limited to potential higher lymphedema risk, sore skin, and fatigue. We're praying all goes as it should and we have a nice, boring 6.5 weeks of radiation.

Rob.

Happy Spring!

Linda finished her chemo successfully with a full dose. She ended up missing only 2 out of 12 doses of the infusion and making it through the entire round of the daily Xeloda. Her side effects were not too bad but some fatigue, aches and pains, numbness, and an interesting side effect of the Xeloda is that her fingerprints are gone. We're not looking for a bank heist just yet though....

We met with the radiation oncologist again and she said there was another study out suggesting that in our situation (2 positive nodes), it is still beneficial to complete radiation on the breast and axilla (armpit nodes). So, we are going with her recommendation (which also matched another recommendation and research I've seen as well) and Linda will get 6.5 weeks total of radiation. It will be Mon-Fri and probably start at the end of this month. The appointments are not very long, once they set everything up (which will be done this week in a longer appointment). But, we're told it can be a bit tiring, going in every day for treatment, after having gone through everything else. We're actually looking forward to getting started since it signals the end of medical treatments!

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Ava is doing great and was 14 pounds, 3 ounces in her checkup last week. She is a happy girl but also can be stubborn when she isn't getting what she wants! This stubbornness probably helped get her to where she is today, so we embrace it (that may be a different story when she wants a pony at age 12, though).

Ava last week:

Easter Bunnies on our doorstep:

Rob.

Happy 7 Month Birthday Ava, Happy Last Chemo Linda!

Little Cricket is Seven Months old Thursday, and it also is Linda's last day of Chemo! Well, technically she'll have the pills to take on Friday but Thursday is the last infusion. So, it really is a Good Friday this week.

Ava is doing well. She continue to grow and talk. We love to get her laughing as it is a laugh that is very contagious. She is very social and loves going places with mommy. We are finally able to get out a bit more these days, but the doctor's office did call and tell us they are still seeing RSV (a nasty virus that could put her in the hospital) so recommended one more RSV shot for Ava Thursday (needle in the thigh isn't the birthday party game we had in mind). But, we are so lucky she is doing so well and the spring will bring the end of cold/flu season! She is even sleeping six hours at a stretch between at least one feeding and sometimes two. This has been nice to only get up once in the middle of the night!

Linda's counts dropped a bit two weeks ago, to where she had a half dose of chemo, but then rebounded again last week to where she got the full dose. Hopefully they stay up enough for one more dose, as they have no makeup exams for the chemo. You either get it or you don't! Her hair is coming back great, although we're convinced the chemo added the flecks of gray to it (actually, it does seem a bit darker and wavier than it was before!). Hopefully those of you who haven't seen her much over the winter can spend some time with her soon.

After chemo is done, we'll have the monthly Zometa infusion for another 3 months (then biannually), but also start radiation in May. If all goes as planned, we'll be done in time for our July vacation trek to Montana to visit relatives.

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Still lovin' the Bumbo chair:

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I'm just chillin' in the rocker, wearing my Robeeze from my friends the Bakers:

Rob.

Chemo Count: nine down, three more weeks!

Thank you for everyone's kind thoughts, cards, emails, etc regarding Shelby. We very much appreciate it. It's amazing how much she was a part of our everyday lives.

Linda completed chemo number nine (out of 12). She's had three weeks in a row with her counts above the cutoff so she's received the full dose! This last week her counts were just above the required white cell number so we're hoping it will stay up for this week - she's on the home stretch now! She continues to do amazingly well, walking almost every day for up to an hour and taking great care of Ava while I work. She is also taking a medical leave from work for awhile to focus on these last stretches of chemo and then radiation. She had been working intermittently but we felt it was important to focus on recovery.

Ava is doing great - quite the amazing little girl. She is "talking" to us and telling us all kinds of important things. We took her over to some friends' house this weekend which was fun, as we haven't gotten out much. But, now we're hoping the cold/flu season is wrapping up and we can take her out and about much more in April.

Playing with her horsey and "Meow" the kitty!

Austin had Ava in the Snugli but decided to take a little break:

Whoever invented the "Bumbo Seat" has got to be a bajillionaire. It sure is cool and Ava loves to sit in it and watch us or talk to us!

Rob.

Shelby

Growing up, I always wanted a dog, but never had the pleasure of such a faithful companion until Linda and I met. Shelby the border collie was Linda's Mother's Day gift, almost 15 years ago. Shelby was our running pal, our camping friend, and day-to-day happy face to always greet us when we came home. Shelby was boundary trained so for the first 12 or so years of her life, she was never leashed or penned during the day. She would sit in front of the house saying "hi" to passersby. The FedEx guy, the UPS guy, meter reader, and entire neighborhood all knew her. Many would walk by our house to specially greet her as she sat out front and bellowed a hello at them, tail wagging. On walks she would stop to say hello to all her friends. Anyone who has been to our house can remember Shelby greeting them up the walkway.

A few years back, Shelby started to wonder off while we were away at work. We got a call from a neighbor that said she was down at the local athletic club talking to anyone who would pet her. Social like her mom! We decided we had to put her on the back deck while we were gone. But, while we were home, the garage door was always open, so she could wonder around the house as she pleased.

A couple years ago, Shelby started slowing down noticeably. She always had bad hips, and it was amazing she ran/walked as well as she did. We decided to get onto a regimen of walking every single morning, which was great for both of us. She got back into shape and was doing well. The vet remarked last year how mentally sharp and alert she was for such an old dog.

When Ava was born, we had to be in Eugene for 2.5 months. Linda's oldest Brian kept watch of Shelby and my Mom Corrine walked her almost every day. I remember thinking that I hoped she would be okay while we were gone. And she was.

On Monday night at about 1am while up with Ava I heard her call out and found her with little use of her left side. We took her to the vet and they thought she may have had some spinal cord damage, but nothing definitive showed. She didn't show any sign of wanting to stop living, so we tried some rehab. By Friday she had improved dramatically; was walking with some assistance on her back legs but otherwise doing great - the vet was amazed at her progress. I thought she had turned the corner and was going to be okay. But Friday night she may have reinjured herself in the middle of the night, and then stopped eating and drinking. By Saturday morning she wasn't doing well and I could see in her eyes she was tired and ready to go so we took her to the vet. Shelby's whole family including Ava were by her side as she slipped away.

It's really amazing she made it through the winter at her age and with us being gone. I think she held on until she knew Linda and Ava were going to be okay, never wanting to be a burden.

We are all very sad to lose our good friend, Shelby. She was 15 years old with bad hips and deaf, but sharp to the end. We are so thankful of the many wonderful years we had with her. She enriched our lives everyday we shared with her. Godspeed, dear friend.

Here are some photos of Shelby.

Brian and Austin posing with Shelby years ago.

Austin, Shelby, and I playing in the snow.

Slip and Slide anyone?



Dogs and camping - is there anything better? Here is Shelby with our Chinese homestay girls.

A boy and his dog:

When Shelby could hear better, we would say "piggy nose!" and she would press her nose against the back door:

Partying in the backyard last year, on my Birthday:

Our grey kitty, "Meow" always rolled around Shelby. Meow thinks she is a dog.

Snowball fight? Count Shelby in (she's hard to see with her white and black camouflage).

On the back deck, where she stayed during the day.

Rob.