Tuesday, 31 July 2012

Guess Who's Two...

It's hard to believe, but Nic is turning two today. He continues to bring us such joy with his infectious laugh, silly jokes, sweet snuggles, and incessant singing. He is particularly fond of "It's a Small World After All," "The Mighty Bruins," "Rudy Can't Fail," and "Jesus Name Above All Names." His musical taste is rather eclectic. His favorite things to listen to are The Clash and Psalty the Singing Songbook, with a little bit of The Gaslight Anthem thrown in for good measure. His favorite book to carry around is Good Night Moon, but the one he wants to read the most is The More We Are Together, and he still enjoys repeat readings of Moo, Baa, La La La. He LOVES basketball. His vocabulary has expanded quite a bit lately (yay for speech therapy) and he is regularly using at least ten words well and quite a few others sporadically. My favorite word that he uses is "dirty." The child loves to clean his hands. I may just get him a stack of napkins for his birthday! His newest way to express anger over silly toddler disappointments is to cry while sticking out his tongue and make a spitting sound. It is so pathetic and ineffectual that it is really really hard not to laugh....and so mostly we turn around so he can't see us giggling.

Nic's health has been great lately. He hasn't been to the emergency room since the beginning of March, and he continues to have no symptoms from his sickle cell disease. We haven't gotten back his latest hemoglobin electrophoresis yet (the test that tells us about his fetal hemoglobin levels), but we have gotten his latest hemoglobin count, and it has gone up a tiny bit from his last round of testing - he's at 10.8! While it's below "normal," for a child with sickle cell this is wonderful. We will see his hematologist on Wednesday. Please pray for more good results from his latest round of blood work and that Jeff and I would be able to process any new information we receive well, ask good questions, and make good use of our time at the appointment.

Monday, 30 July 2012


The doctor called today with the results from Mom's latest CT scan. The tumor did not shrink this time. We were pretty discouraged by this news.

On the bright side, the tumor also did not grow. In fact, Mom's doctor is perfectly happy with the results, because his goal is tumor stability, and that was achieved.

Mom and Dad meet with the doctor on Thursday to discuss the results and the continuation of Mom's treatment. Because the tumor was stable she can stay in the trial that she is currently in (if she gets worse she has to leave the trial), so that is good news.

Please pray for all of our spirits. Even though we know that Mom's type of tumor rarely shrinks during chemo, it did before so we were really hoping it would again, especially after how good Mom's blood work has been lately. Pray for wisdom for my parents as they meet with the doctor and discuss Mom's progress. And, of course, pray that Mom's cancer would be contained and that her tumor would shrink through this next round of chemo.

Friday, 27 July 2012

Update on Mary: CT Day

Mom has her CT today. In order to have the scan she has to drink Barium, and it makes her feel pretty crummy. Please pray that she can get it out of her system quickly, that the scan will go smoothly, and that the results will be good.
It takes at least two business days for them to read the scan, so the earliest we will hear anything is Tuesday afternoon, but it could be as late as Thursday when they call. Please keep us all in your prayers. These waits are nerve-wracking and the anticipation makes us all a little jumpy. Pray for peace and good sleep for Mom and Dad especially, although I know the rest of the family could use it too.
Thank you all for your continued support in this journey, it means the world to us. We are so grateful to have you praying with us.

Wednesday, 25 July 2012

True Story: I'm Exhausted!

Everyday for the past ten days I have thought to myself  "today maybe I will have a minute or two to myself and be able to write a blog post." HA! Clearly that has not happened. Life is very very full and very very busy right now, but we are having a great time being a whole family again.

We have had lots of adventures in the past ten days. I would recount in detail the wonderful airplane ride wherein all three boys and I took not one but two flights to get home, on a totally full airplane, but that would require me to relive it, and I don't know that I can do that and maintain my sanity. Suffice to say it was every parent's dream, complete with one melt-down so large that it attracted the attention of two flight attendants, and so much poop that I ran out of clothes to change children into. It was as if all my children conferred about the glories of pooping at high altitudes and then conspired to store up three day's worth in order to bombard me mid-flight as soon as we hit turbulence and the seat belt sign turned on. It was that good.

One might think that after such a fantastic journey it would be smooth sailing once we got here, but our first full day with me at home and Jeff at work was really poorly managed on my part and resulted in much misery for everyone involved. I am happy to report that since that day I have hit my stride and we are managing well, albeit in a home that is dirtier and more disorganized than usual. But when you consider that I have herded the children to three doctor's appointments, two blood draws, three library story times, a park play-date, multiple trips to Target, and two speech therapy appointments, and that I have rearranged the boy's room, made a hot dinner almost every night, done at least 12 loads of laundry, canned 11 pints of pickles (6 dill, 5 garlic-horseradish bread and butter), made two kinds of ice cream, put two batches of banana-chocolate chip pancakes in the freezer, dropped off a load of stuff at the salvation army, and started cloth diapering again...I'm feeling pretty accomplished. Now, if only I could clear off my desk, finally finish my thank you notes, and mail the birth announcements...well, a mother's work is never done.

Monday, 23 July 2012

A Brief Hello

The blog has been a little quiet lately as we've been working on figuring out our new normal. Amy assures me that a more substantial post is forthcoming, but in the meantime, here is a short video hello.

Thursday, 19 July 2012

Update on Mary: Good Numbers

Mom got her last chemo of this round today!

Her white count was fantastic - 4600! Also her CA-19 marker was down again to 218 (for perspective, this is down from 1400 when this began, but a healthy person has a CA-19 of less than 35) . Anyhow, we will take any good news we can get. She has another CT scan at the end of next week. It usually takes a few business days to read the scan, so we should have some news by the very end of July or beginning of August. We are praying that the cancer would be contained and that the tumor will have shrunk more.

The chemo regime that mom is on is very hard on veins. Because mom has had a blood clot in the past (during pregnancy), she is at a high risk for having issues with clotting while on these drugs. Please pray that she will not have these problems and that her veins would stay strong and healthy.

Thank you all for your continued prayers. We are so thankful for all the good time we have had with mom in the past few months. The boys and I are back in IL and missing her, but glad to be with Jeff and back to our "normal" life. Even though I am far, I will continue to post updates, I just need to get someone else to send me some pictures. :-)

Thursday, 12 July 2012

Swim Lessons, Part Two

After a few days of lessons Tommy experienced a major shift in his opinion about swimming. Instead of begging not to go, he began to ask if he could go. Much better.

At the end of the two weeks he was the first in his class to get in the water, was very enthusiastic about jumping off of the dive platform into the water, and was doing a little dog paddling on his own. He passed his class easily, but that is partially due to very low expectations for "passing."

We are very proud of our new swimmer!

Tuesday, 10 July 2012

It's About Time...

Mom and I have been working hard to get some things done around the house that Mom has put off for some time now.

Take the project we recently completed. Three years ago I saw a picture display while visiting a relative's home. I liked it so much I told my mom about it. A bit later she purchased a bunch of frames for the project, and we decided to pick out pictures and create our own display. We originally wanted to do a mix of old and new pictures, but the task was way too daunting, so instead we printed out a bunch of pictures that we took this year. We printed out about ten more photos than we needed so that we could play around with the positioning of the photos and make sure that we balanced out the different colors and poses. Mom and my Aunt Sandy scrubbed up all the frames, and then we painstakingly measured and hung, and remeasured and re-hung all the photos.

After three long years, we have finally finished!

Sunday, 8 July 2012

Hanging by the Pool

We had a girls plus Kenny weekend in Palm Springs...and it was glorious. I got so much sleep. I forgot how much I love sleeping. It is the best. I also got to read. I adore reading. I never get to read anymore. So sleeping and reading and doing it all in the sunshine- that is my new definition of happiness.

I know it sounds strange that I got to do all that with my baby by my side, but my current sleep troubles are not brought about by Kenny. He is sleeping really well now; he either wakes me up around 4:30 or around 6, and then after eating will go back to sleep for as long as he can. The real sleep disruptors are Tommy and Nic. They wake up rather early and want various things- snuggles, clean pajamas, water, breakfast, and it goes on and on. While they ask for these things they are sometimes rather noisy, and this wakes up Kenny, who then wants to eat and needs to be changed and then we all have to go downstairs for breakfast and Wimbledon (thanks Dad).

Also, on this lovely girls weekend I had tons of help with Kenny. My Aunt Annie is the baby whisperer. She and my cousin Molly spent a long time watching Kenny so I could float in the pool with a magazine. Bliss.

We also painted our nails, watched movies and TLC, and ate yummy dinners and tons of chocolaty snacks. It was like a long slumber party.

Unfortunately we lost the camera after a few hours (but thankfully found it again), so my picture selection is rather limited.

The cutest boy at the pool:

Soaking up the sun:

Saturday, 7 July 2012

Update on Mary: Another Round

Mom started another round of chemo today. This is the second round in this set, which means she will be getting another CT scan once she completes it. We are all anxious to see if the chemo is continuing to work (of course).

In good news - she has gained a lot of weight and now and is busting the scale at 112 pounds. We are so proud of her!

Please pray:

For her white counts to stay above the required threshold so she can make all of her treatments.

For no nausea, good rest, and increased energy.

For that tumor to SHRINK!

Thank you all so much for your continued prayers. They really mean the world to Mom. Really.

Friday, 6 July 2012

Happy 4th of July

We had a very happy 4th. We celebrated with red, white and blueberry pancakes, a family cookout, a rousing game of trivial pursuit (1981 version), and fireworks at the beach. The cookout was great fun- one of my cousins brought her kids and the boys had a wonderful time playing together. Tommy is basically in awe of her oldest, and they have very similar "all boy" personalities so they wrestled and ran the entire afternoon and yet still had energy to spare. Next came a contentious game of trivial pursuit, which ended very well since my team won. After dinner we all bundled up (CA style, which means put on sweatshirts for my IL friends) and drove to the beach. It was really fun to observe the boys as they watched fireworks. Tommy chattered nonstop through both shows (we had one on each side of us), while Nic oohed and awed quietly and then furiously signed "more" all the way home. The great thing about fireworks on the beach is that they are close enough to see, but far enough away that they are pretty quiet and thus not scary to little children.

Here are some pictures of our day. I am subjecting you to some pictures of the decorative foods I made, because I am so proud that they turned out nicely. I'm a decent cook, but I waste very little time on embellishments so my food is usually not picture worthy. However, yesterday I rolled my blue-cheese ball in bacon and it looked awesome, and I scooped out a watermelon to use as the fruit bowl and that took a stinking long time so I had to take a photo to preserve my efforts for all time...and prove to Jeff that I did it!

The cheese ball:

The fruit bowl:


Trivial Pursuit:

Putting Mom to work:

Her signature dish:

Chowing down:

Sleeping through the party:

Hugs from Auntie Colleen: