31 weeks

You know it's not your first baby when you have to pull out the gestation wheel that the OB uses to figure out how many weeks you are!

Baby #2 is growing and growing. As I have been throughout this pregnancy, I am much bigger than I was with Ellie. People at work say things like, "Are you sure it's not twins?" and "Wow, you have two more months to go?!?", which are sort of nice ways to say, "Goodness, you're huge!". I'm not sure that my belly can continue to expand at this rate for another 9 weeks, but somehow it happens.

We found out last week that I am pretty anemic, a problem I also had during my pregnancy with Ellie. No matter what type of supplements I took with Ellie, my hemoglobin was always below their level of comfort. When I was discharged from the hospital after having Ellie, it was very low. I'm back on the iron supplements now but am not terribly hopeful that the anemia will be completely corrected. At least I have an explanation (or excuse?) for my exhaustion!

Ellie still continues to be fascinated by the little one growing in my belly. She talks to my belly and mostly says, "Hi, baby sister!". Whenever she puts her hand on my belly, she jumps away quickly and tells me that her baby sister kicked her. We've also started unpacking baby stuff in Ellie's room. All of Ellie's old infant clothes now hang in her other closet. When I look at them, I just can't imagine that Ellie was ever small enough to fit into those tiny sleepers! Her crib is now empty and the baby swing and bouncer seat are in the play room. Ellie seems to be adjusting to the slow changes we're making for the baby - we'll see how it goes in 2 months!

Sticker pox

Thanks to the binky fairy (see the post below) and her gift of a huge container of stickers, we've all come down with sticker pox! Warning: it's highly contagious; if you come to our house, you're sure to catch it from Ellie!

Fun post!

In the midst of all the yucky stuff we're dealing with right now, we're still managing to have lots of fun with Ellie....

Last weekend was the end of the pacifier! We had warned Ellie for several days that the binky fairy would be coming on Friday night to take her binky and give it to a baby somewhere who really needed it. Yes, that's the Friday night after the oncologist appointment when Ellie's parents just wanted a good night's sleep and did not want to even think about a night spent comforting a toddler who wants her binky. But even cancer can't stand in the way of the binky fairy! That night Ellie decorated an envelope for the binky to go into and then she dropped it in and helped me seal it up. She put it on the front steps before she went to bed and HAS NEVER ASKED FOR IT SINCE! This coincided with her first night in the toddler bed (because you know they're not allowed in that kind of bed, right?) so she was up a few times getting used to the bed, but she never even asked about the binky. The next morning, this is what she found on the front steps from the binky fairy...

Just as a side note, we borrowed this idea from Supernanny Jo Frost and obviously would recommend it to anyone wanting to separate a toddler from her pacifier!

That same weekend, Ellie rode her tricycle for the first time. The pedals are still a little hard for her to reach but she enjoyed the new experience. We all cracked up watching her do it!

She couldn't quite get it right though....

Ellie seems to have a talent for memorizing her favorite books. In this video, she's "reading" her new favorite book (Butterfly, Butterfly). If you were familiar with the book, you would hear that she is actually saying the correct words for each page. We're just not quite sure why it sounds like such an aggressive reading!

On the same day of the above book reading, Ellie wanted to perform for the camera. In this video she's singing Itsy Bitsy Spider with a little extra surprise added in at the end...

Second opinion

Although I had hoped to spend some time today downloading video and pictures of Ellie here, this post will still contain some good news! Today Lori and I met informally with another one of the oncologists who specializes in hematology where we work for an informal second opinion. He spent a significant amount of time explaining the immune system and its mechanics to us since the lymph nodes play a key role in it. Much of it was a little over our heads! There were a few key points that we both walked away with though. I'll try to explain them below, but please keep in mind that this is what we heard and I can't guarantee that in my state of anxiety that I'm getting this totally correct!

1. Although some cancers have clear environmental risk factors (eg. smoking and lung cancer), follicular lymphoma does not appear to be one of those. The oncologist stated several times that Lori did nothing to cause this. So it wasn't something she ate, drank, or was exposed to. Although I work in cancer genetics I can't totally explain this, but I'll give it a shot! When DNA is copied to make a new cell, there are always mistakes in that new DNA. We have built in check points and genes whose job it is to correct those mistakes, but every time DNA is replicated, mistakes still happen in all of us. Some of those mistakes make absolutely no difference in the function of a gene or of a cell, but some make a huge difference depending on where the coding error happened. . The oncologist told us about a specific gene that was mentioned on Lori's pathology report. This gene's job is to help to regulate cell growth by increasing growth. In the case of some lymphomas, when the DNA is replicating there's a dyslexic moment and that gene is inserted in the wrong place right in the middle of the genes that are used to form antibodies. When that happens it causes certain cells to continue growing when they shouldn't, which is of course a problem and ultimately can lead to cancer. This isn't the kind of genetics that I do so I'm sorry if this doesn't make sense - it was totally clear when he was drawing it on a piece of paper today! Let me also say that the oncologist reassured us that this form of lymphoma is not hereditary. Although it is caused by genetic changes, these changes occur in single cells and are not passed on in the family.

2. For those of you reading information about lymphoma on the Internet, BEWARE! We asked about some survival data that Lori had found, which was pretty depressing. The oncologist explained that the introduction of a drug called Rituxan changed the face of lymphoma treatment and it was approved by the FDA in 1999 or 2000. So the survival data out there doesn't include the many people who have taken Rituxan and are doing great. Those numbers will be higher in the future as the benefit of this drug is included in the data.

3. We heard this before but it was nice to hear again - if/when Lori needs treatment now or in the future, the available options (including the one above) have been very successful. There's also quite an arsenal of treatments if one isn't as effective as we would hope.

We left feeling a little more uplifted today. We'll talk to this oncologist again after the staging studies are done and we've met with our primary oncologist for final recommendations. Tomorrow is the bone marrow biopsy so we again ask that you please keep Lori in your thoughts and prayers!

What we're reading

When we saw the oncologist on Friday, we mentioned that we had decided not to read anything on-line about lymphoma (which they agreed was a very smart thing to do!). The nurse practitioner did tell us, however, that we could go to the web site for the Leukemia & Lymphoma Society for reliable information. We've both spent a little time there and it is full of information, some we want to know and some we don't. For those who are interested in learning more, the web site talks specifically about the subgroups of non-Hodgkin's lymphoma - Lori has follicular lymphoma, which is considered one of the indolent types.

We also read an article on non-Hodgkin's lymphoma that was published today by the New York Times. The article focuses primarily on the rising rate of non-Hodgkin's lymphoma as well as the amazing advances in treatment. We don't think that Lori will need treatment now, but according to this article, if she does now or in the future, she will have many options that are considered successful and possibly curative. The oncologist has already discussed Rituxan with us as a likely future treatment.

All of this reading has given us even more hope than we felt on Friday and has of course added to our list of questions for the next visit! We are hoping that our next appointment with the oncologist will be Friday, May 2nd. In the meantime, Lori had blood work done on Saturday and will have the bone marrow biopsy this Wednesday and the CT scan on Monday, April 28th. We'll get the results of all of those tests at her next appointment and will find out then what the final plan is. We'll update everyone then.

In the meantime, life goes on so our next post will hopefully be about the nice weekend we had enjoying our family. Ellie was in a very performing mood today so we got some great video of her "reading" and singing. She also rode her tricycle for the first time on Saturday, which we'll post pictures and video from. And tomorrow it's back to work and "normal life" for both of us. We really needed the few days at home that we were lucky to be able to take, but it is definitely time for Lori and I to get back into our usual routine.

Words you never expect to hear

The past few days have been terrible ones for our family. As most of you know, Lori was diagnosed with lymphoma on Wednesday. We have gotten what we consider good news today about the prognosis, but first I'll start at the beginning...

A few months ago Lori felt what we thought was a cyst on the back of her neck. She went to our primary care doctor who agreed that it was likely just a cyst. She was not at all concerned and explained that they would just follow it to see if it grew. She did give Lori the name of a surgeon in case Lori became concerned or just wanted it out. Eventually, Lori was uncomfortable with the idea of this mass in her neck and she was having some pain in her neck and shoulders so we thought that maybe the cyst was sitting on a nerve. She made an appointment with the surgeon who then removed it the next day. Initially, the surgeon agreed that it seemed to be a cyst, but when she removed it the surgeon informed Lori that it was actually a lymph node. The surgeon was still very reassuring and told Lori that it was likely nothing.

Less than a week later, we found that out that it was very much something. According to the pathology report, Lori has B cell follicular lymphoma. I could never imagine the shock that we felt in learning this.

She.

has.

cancer.

In the most base form of denial, I kept saying to Lori that "lymphoma" must have some other non-cancerous meaning that we just don't know. Right? There's NO WAY that this could be cancer. Lori just sat there and cried.

We have a 2 year old. We have a baby on the way. We're young. This can't be happening. And if it is, how could life be so unfair?

The greatest unanticipated benefit of us working for a comprehensive cancer center is that everyone takes care of you and they do it very quickly. The people we work with took control of the situation immediately. While still in utter shock and disbelief, we were ushered down to meet with the nurse practitioner for the oncologist we eventually saw this afternoon. She walked us through the pathology report, talked about some of the treatment/management options, and was generally reassuring to us. This all happened within 30 minutes of us getting the news. The greatest gift we got that day was her time and her willingness to open up an appointment slot for us on Friday (today) with the oncologist. After speaking with the nurse, we left work feeling numb and just came home to adjust.

The past few days have been an emotional roller coaster and we have gotten little sleep. Sometimes we have felt optimistic - the surgeon used the word "surmountable" so it must be okay, right? Sometimes we have felt the greatest fear I've known. And throughout it all we had to be fully present for Ellie, which has truly been the most difficult part of all of this. Lori has had a hard time being with Ellie and thinking the "what ifs?" that I'm sure I don't need to spell out. The best decisions that we made during this time though were to just feel what we were feeling in the moment and not to get on the internet to learn more about lymphoma.

But today we met with the nurse practitioner again and the oncologist, Dr. R, and as I said before we feel that we have gotten good news. Our understanding of this is not complete, but I will paraphrase what I heard. The lymphoma is grade 1 of 3, which is great. It is also a slow growing, non-aggressive type of lymphoma. And because Lori had the lymph node removed and is not symptomatic, she will likely need no treatment. I think we felt 20 pounds lighter just hearing that! They have scheduled her for a bone marrow biopsy next week and a CT scan the week after to look for other involved places. They warned us that they do expect at least some other nodes to "light up" on the scan since this is a lymphatic cancer, but that it wouldn't change their plans and we would remain optimistic.

However, this is not something that is gone. The lymphoma is still present in other parts of the lymphatic system and there is nothing you can do to get rid of all of it. You certainly cannot take out all her lymph nodes. There is the possibility that this will become a more aggressive type or other lymph nodes may become enlarged, at which time treatment would be used. There are a few treatment options that they explained to us today and all of them have high levels of success. For now though this will be treated as a chronic condition and managed over the rest of Lori's (hopefully very long) life. She will need to see Dr. R every 4 months and will have a CT scan every year to monitor it. There is every reason to believe that this will be successfully managed for the next 30 years.

huge sigh of relief.

Although this diagnosis is not good and we wish we weren't suddenly thrust onto this journey, we are aware of how lucky we are. We were thrilled with the news today and feel so happy about the prognosis. We have a beautiful 2 year old daughter who understands nothing of this and just wants mommy to take her to the playground. We are expecting another wonderful daughter in 2 1/2 months. We have each other.

We will try to keep everyone updated about the results of the blood work, scan, and bone marrow biopsy. We will not see the oncologist for 2 weeks though to get the results and final recommendations. During all of this time, we have appreciated and will continue to appreciate your thoughts, prayers, calls, emails, etc.

We are doing okay. We will all be okay.

Soccer star

Since college will be around $2 million a year by the time Ellie is 18, Lori has decided to focus on an athletic scholarship as Ellie's ticket to school. Right now Lori is starting Ellie off with soccer and then is planning to introduce lacrosse later on. So far, Ellie seems to have a natural gift for just running up and down the sidewalk. We're not so sure about the hand-eye coordination yet.

No, she's not looking at anything in the sky. If you notice there's a trend in these pictures of the head tilted and looking up - that's her new picture pose!

Ellie's quotations

I couldn't wait for the days that Ellie would begin talking. Everyone warned me though that once she started she wouldn't stop and I would miss the quiet days. While that may be true sometimes, she has such a funny sense of humor and keeps us laughing most of the day. In the past couple of days, she has said a few very funny things I had to share...

Cheap entertainment

For a two year old, a glass of seltzer can provide minutes of entertainment (that is, until the bubbles stop). Ellie LOVES seltzer water and whenever one of us has some, which is every day, she wants a small glass, too. The other day she took her first sip and was fluttering her eyes and making a funny face in response to the bubbles so we laughed. Then she leaned down and stuck her nose over the glass and said, "Hello, zippy water. Come up my nose!". I think I almost feel off the chair.

You have fan?

Our conversation tonight while I was rocking her before bed...

Ellie: That fan? (pointing at her humidifier)

Me: Yes, that's a fan.

Ellie: You have fan, too?

Me: Yes, I have a fan in my room.

Ellie: That fan, too? (now pointing at her ceiling fan)

Me: Yes, that's a fan, too.

Ellie: You have one?

Me: No, I don't have a ceiling fan but I wish I did. We only have that kind of fan in your room and the play room.

Ellie: Oh, okay. I buy you one with my money. Okay?

She said this with such a serious face that I didn't know if I was going to laugh or cry. It was so funny and I was amazed that she was able to put together that you can buy things like a fan with your money. But it was also so sweet to see such evidence of our generous girl.

Broccoli!!

I think because of her food limitations, Ellie really loves most fruits and vegetables. Sometimes though she surprises me with her preferences for some foods, like really spicy things and foods that I think a more grown up palette appreciates. At the grocery store this weekend, strawberries and broccoli were both on sale and were on display next to each other. I was excited to see the strawberries and asked Ellie if she wanted some, but all she wanted was broccoli. I kept trying to explain that we could have both, but she just wanted broccoli. She even had to hold it in the buggy while we shopped. When I told Lori the story, we thought maybe she was just being obstinate and wouldn't really like it as much as she thought. Well, I made it last night and she picked out every single piece....to eat FIRST! She didn't eat the rest of her meal until every single bit of broccoli was gone. Tonight we had it again and when I was putting the plates on the table, she was running around screaming, "Broccoli, broccoli, yay, broccoli!". Our healthy little eater! She made up for it though by having vanilla ice cream for dessert :-)

Ultrasound pictures

Yesterday we had the wonderful experience of seeing our newest family member by 3D ultrasound! We had done the same thing when I was pregnant with Ellie and loved it so we decided to do it again. This little one made things difficult by being in the same position as Ellie was for her ultrasound - head up with a foot in front of her face! With Ellie we actually had to go back another day because she refused to move that foot. This baby was a little more cooperative and although she didn't move her foot completely out of the way, we were able to get some beautiful views of her face.

We (Lori, Mimi, Boppa, and I) thought that the new baby looked like Ellie did in her ultrasound. Ellie had much chubbier cheeks, but I was a few weeks farther along with Ellie when we did it. See for yourself and let us know what you think!

Our newest family member, sucking her thumb - so cute!

Ellie with her hand in front of her face - did she really ever fit in there?!?!

New baby with her wrist below her chin

Ellie

New baby with her arm under her chin

Ellie and her very chubby cheeks

Transitions, transitions

In addition to all the big girl transitions we talked about here, Ellie had a very big one today - she moved into a new class at school. Ellie has been in this daycare since she was 4 months old. She started in the baby room with Miss D and Miss C. At 18 months, she moved into the "twaddler" room and Miss D moved in to be the teacher for that room at the same time. She is now 2 years 5 months so she has been with Miss D for over 2 years! Miss D has become a part of our family and Ellie just adores her.

But at 2 1/2, the kids move into the toddler room, which is the first pre-school room. Ellie and her best friend have been slowly transitioning into that room for several weeks now by spending a few hours a day there. Today was their first full day and Ellie is now a full time big girl at school! We talked about it last night and she told us that it was scary, but today when we walked in, she was so excited to hang her things in her new cubby. I, on the other hand, burst into tears (and yes, I do know that I'm supposed to save it for the car so I don't upset her, but I'm pregnant!). Her new teacher, Miss S, said that Ellie had a good day when we picked her up. She participated in everything, including nap time on a cot which she had never done before. We are very proud of our big girl!

Getting ready to leave for school in her pretty dress and new spring coat.

Hanging her bag in her new cubby

Running to give Mommy a hug goodbye

Hugging Mama (when she kissed me goodbye, she told me I had rain drops on my face - I could just eat her up!)

After school, we stopped at Rita's for Italian ice to celebrate her big day.

Brain freeze!