Monday, June 30, 2008


Well, I have been wanting to get this done for some time now... an update.

I started chemo treatments on June 12th. I go every two weeks assuming that all my stats stay on the go-and-go. I just got my second on on June 26th (this last Thursday).

The first one included my port surgery on the same day which I do not recommend for anyone else. To cut down on the work for me I am going to copy another email that my Mom wrote to some of you that tells some of the story...


From Kim:

Hello All,Well, it has been a rather difficult week for Danielle. Tuesday she had her mugascan which is a test that measures the strength of her heart muscles. I believe this one was a baseline test as one of the four meds that make up her chemo cocktail tends to affect the muscles that surround the heart. That was relatively uneventful. However, on Thursday, I took Danielle to Naples Community Hospital Radiology Dept. for the implant of the chemo port. We arrived at 7:15a and Danielle did not go into surgery until sometime after 9am. It was not a good experience. The staff there is not exactly professional let alone compassionate or slightly mindful of good patient care. Although Danielle was reassured that the experience would be very similar to when she had the node biopsy with regard to sedation, this was NOT the case. She was not sedated at all prior to being wheeled into the OR. Basically once they had her arms strapped down and a sheet over her face, they administered a local anesthetic and did give her a little something in her IV to calm her. But, she was wide-awake throughout the entire procedure and VERY scared. The entire process was very upsetting and could have been much better had the nurses, etc. just explained the process and expectations to her. Chock this up to yet another reason NEVER to go to NCH!! (Except if you go to the NCH Day Surgery. We have had wonderful experiences there, but the main hospital leaves a lot to be desired :()

The port was implanted just above her right breast. Just a little before noon, we finally walked out of NCH and decided to go to a nearby Greek restaurant so Danielle could get a cup of her favorite chicken lemon soup -- and catch her breath before getting her first chemo treatment. Paul was at Naples High School working on a summer project and joined us for lunch, which was great! After some hugs, tears and deep breaths, we ate some lunch and felt a little bit better. Within the hour we arrived at Dr. Morris' office for her first chemo treatment which went well. Danielle was worn out and ready to go home!

Zane's Nona (Paul's mom) came from Palm Beach to stay with Danielle, Paul and Zane for the long weekend, which was perfect! So while Danielle was making it through a very busy and emotional Thursday, Nona took Zane to his great aunt Rae's in Bonita to go swimming and have a fun-filled day.Thursday did end with some good news -- Ben (Danielle's brother) and his girlfriend, Rachael are in the process of moving from Boone, NC to N. Conway, NH by July 1st. Ben and Rachael flew to Conway on Wednesday with the mission of finding a home to rent and Ben had a couple job interviews scheduled. (Rachael has already secured a teaching position at Madison Elementary School!) Thursday evening, Ben called to say he and Rachael had just found their dream house! It looks out over a lake with the mountains behind -- hardwood floors and just perfect!! And, he was offered a job at his first interview! It is amazing to me how life's ups and downs can somehow keep an even keel -- sometimes!

The implant site for the port has been painful for Danielle and she woke up Friday with a lot of discomfort and slightly nauseous. Paul took her back to Dr. Morris' office for her first neupogen injection. Barbara, her nurse, showed her and Paul how to give the injection as Danielle will be doing this herself on a daily basis. While there, Barbara checked her dressing covering the incision for the port implant. She was appalled that the dressing was not even covering the incision and it was basically wide open! For someone whose immune system is highly susceptible, this was not good! Needless to say, Barbara put a new dressing on and asked Paul to keep an eye on Danielle's temp for the next few days.

In the meantime, Zane developed a bark of a cough, hoarse voice and sore throat! He has the croup! Paul took him to the pediatrician Saturday morning and left with some meds for poor Zane. He is doing better today. But, Danielle is very tired and nauseous. She feels so tired and weak that she doesn't really want to stand up. Her hands and feet are achy too. We are all hoping that by tomorrow, she will start feeling better!Overall, I think we are all glad this week is over and behind us. Danielle should be feeling a bit better every day. Zane is on the road to recovery. And, Ben and Rachael now have all their ducks in a row ready for the big move July 1st!

Best to all and Happy Father's Day to all the great Dads out there!!!Much love, Kim

So sorry if this all seems jumbled. All sorts of fun things happen when you copy and paste!

Well, so the surgery was a terror. I was not completely awake through the whole thing. More like in and out a bit but it was not like anything I have experienced before! The terror now of the whole thing is that I will have to go back on day to get this damn thing taken out!!

Well, so I was pretty sick for a whole week after the first chemo. This most recent one they gave me a different drug to battle the nausea that pairs up with a steroid. This has seemed to do the trick! So far so good! I have felt totally zapped (I also have a sinus infection on top of it... this damn immune system!). It is like I kind of have a flu of some sort... VERY tired and VERY achy. It has been great having Christy (Paul's Mom) stay with us during these times because I would not be able to take care of Zane for a length of time for a couple days following the chemo. I just get too tired and unable to think or focus.

I am still taking the Neupogen shots every day, thanks to Paul. He has REALLY become a pro at giving me the shots. I don't feel them that much anymore and really that is more Paul because he has found the technique. I am so lucky to have him!

We met with a radiologist last week and we REALLY like her. She is so nice and easy to talk to. The plan for the radiation will be after my last chemo treatment we will wait about 3 weeks and then start radiation for 3-5 weeks (depending on what the scans report at that point). I will be going in every day Monday - Friday for the radiation. The worst part will be the constant driving back and forth! Arghh! The treatment itself I guess will only take about 15 minutes each.

And now on a much more happier note... the boy!! He is doing so well and just growing up so fast! He is talking up a storm and is absolutely obsessed with tools. It is the first thing he does in the morning and the last thing he does before bed. His hammer, screwdriver and now a sander are never far from his finger tips!

And thanks to his Aunt Be, we have an Obama-Boy on our hands! Check out his heart-throb!

And we have WORMS!! Yes, worms! Part of my birthday present from Mom and Pete was a worm composting bin! We got the worms recently and set it up! Zane loved looking at them but would NOT touch them. I was kind of surprised!

So every time I think of writing to the blog lately I feel terrible because it is such "medical news" in this household. It is unfortunate, but that is what is going on. My camera snapping techniques have wandered. The energy to run for the camera is not quite there. AND the patience to upload those darn videos (they take so long!) has not surfaced too much. They really need to make that easier!!!

Love to all of you and thank you to SOOOO many people who have sent their kind thoughts and prayers. I have not been able to thank everyone directly for their kindness, but know that I do thank you dearly!

Sunday, June 08, 2008


But first... FUN WITH BOXES!!!

Now the more serious stuff...

Well, last Thursday I went in for the "big" appt. to see what stage they believe I am at and to find out the rest of the plan. After another very long week of pulmonary tests, a PET scan and an ultrasound on my thyroid, we were all a little worn out.

I am a Stage 2b. It is in the left side of my neck as well as my mediastinum (middle of chest). It is the area that is between your lungs. I will have to have 8 treatments of chemotherapy followed by radiation on both of these regions. The chemo is set to be two weeks apart but that could be adjusted to 3 weeks depending on my reaction (if any) to the chemo.

The tests are not over... they will probably continue and continue. They are not hard but they are a lot and it gets exhausting coordinating everything. So this coming week I go in for a MUGA scan (read why here) and then Thursday is a BIG day! On Thursday bright and early I go in for a surgery to implant my port. They will use this for everything (blood draws, medicine injections, and the chemo treatments). This avoids them having to poke me over and over and also avoids burns to the skin because of the chemo drugs (ahhh!).

Immediately following this surgery my wonderful Mom will take me over to the oncologists office for my first chemo treatment (probably barely awake from the anesthesia from the surgery). I think this is crazy and a lot for one body to take, but what do I know?!? While all this is happening poor Paul will most likely be working away with test writing (last week for him and them we get to have him to ourselves for a little while! Yeah!). Nona/Christy/Mom (Paul's Mom) is coming Wednesday night so that she can hang with Zane all day Thursday. This is just so awesome of her and I just can not thank her enough. They will have such a good time together because they always do and we will feel so cozy knowing that is what Zane is doing for the day. Hey, you never know... maybe even his Aunt Rae-Rae will come over too and they can take him to the play area in the mall! (It is just too hot here to go play in the park! Blazing hot and muggy!)

I am pasting in this blog an update my mom sent out that is written very well and gives you some more info and ideas on what is going on. I will probably do this from time to time because she will frequently be sending out emails to folks. This will be an energy saver for me sometimes but allow me to keep you all updated as well.

From an email from my Mom (Kim):
Hello All,
Most of you may already be up to speed, while for some of you this may be the first to hear the news. I will try to email all of you along the way as Danielle moves through her chemo and radiation and beyond. Obviously the best way for all of us to help is by sending love and positive energy her way to give her strength and that good cozy feeling of being in everyone's loving arms when the going gets tough.

So, here's some background -- Danielle has had enlarged lymph nodes in the base of her neck on the left side. The swelling and tenderness started in January at which time we thought it was from a sinus infection. After antibiotic treatment, the nodes were still swollen and tender. After MRIs, CT scans and wait and see's, Danielle finally saw a fantastic ENT specialist that wanted to biopsy two of the nodes right away. This was down a couple of weeks ago. Although the news wasn't what we wanted to hear, we are forever grateful to Dr. Laskowski (the ENT) for having the foresight to proceed as he did. The diagnosis is Hodgkin's Lymphoma. Altho a very serious cancer, of all the cancers, Hodgkin's has the best prognosis and outcomes -- so there is a silver lining.

This week has been a busy one. In order to determine the "stage" of the cancer, Danielle had to have two CT scans and a PET scan -- and of course, my fair-skinned, fair-haired daughter developed an allergic reaction to the injectable dye needed for the CT scan. So, on top of it all she had to take a prednisone pack to ease the nasty torso-covering rash that was very itchy! But, she made it through.

Today, we met with her oncologist, Dr. Daniel Morris to hear the results of the scans and what the next steps will be. Danielle has "stage two B" Hodgkin's which means the disease is detected in more than one location and she is symptomatic (night sweats, fatigue, etc.). The disease showed up in the neck (which we obviously knew), but it also showed up the space between her lungs and heart - the medial stinum. She will undergo chemo treatments every 2 - 3 weeks (depending on her blood levels) for a total of about 6 to 8 treatments, followed by radiation in both areas. Her chemo cocktail will be ABVD for those that want to surf the Internet for more details. The major side effects are hair loss,which typically occurs within the first 3 weeks, and the chemo may leave her sterile. Other than that, most other side effects such as fatigue and nausea are eased a great deal with medications. She will receive an injection of neupogen daily to keep her immune system strong.

We feel very comfortable with Dr. Morris and her nurse Barbara -- great people that really have Danielle's best interest and COMFORT as their top priority. (I seriously don't know how these people deal with this every day -- but I'm sure glad there are those that do!)

Next week, Danielle will undergo another day surgery -- this time to implant a port which will be located above her left breast. The port makes it a lot easier to give her the chemo -- they will even take blood samples via the port -- so no more sticking in the arm for her!! Within a day or two of the port implant, they will start the chemo.

Danielle is awesome. There are so many blessings that come to us mothers and maybe the best one is that we no longer think of yourself as number one! Having a baby and husband to take care of puts another perspective on life and we moms tend to suck it up like the best of them -- or maybe better than the best of them! She is strong, learning all she can to keep herself as healthy as possible -- and she has a lot of helpers at her side. I promise to send email updates along the way. We love you all very much...Kim & Pete

We have some new additions to the family (yes, I am crazy, but that is fun!). We got some chickens last weekend! This was one of my wonderful and most requested birthday presents! Paul, Mom & Pete built me a chicken pen and moved my Mom's chicken coop over to our house. (Those pics are not yet taken but hopefully will be soon!).

Zane just loves to take care of them. We have four of them and so far only one has a name and that is Prima. We asked Zane what he wanted to name one of the chickens and he quickly pointed to them and said "One!" So we made the name a little more interesting and we call her Prima. We will see what we come up with for the other ones.

It will take about 5 more months for them all to be making eggs. You can see in the pictures that we have them in a large dog pen until they get bigger so they don't escape the small spaces in the large pen.

When we were out feeding the chicks he kept saying "pet, pet" and trying to get in the cage. So finally I let him walk in there thinking that he just needed to get to the back of the cage because they were all gathered in the back. Instead he got in there and sat down and just watched them run around. He was so quiet and didn't move. Just watched. It was so darn cute we just couldn't get over how darn sweet he was!

Sunday, June 01, 2008

The Diagnosis

Well, this blog post is not quite as fun as the rest. This one is very hard, actually. Many have wondered lately if I am ok because of my major slow down on the postings of all of Zane's fun days and our fun times with him. I have not been ok. But I didn't know why until recently.

On May 20th I was diagnosed with Hodgkin's Lymphoma. (Click link to learn more.)

I have for several months now been dealing mainly with some large, tender lymph nodes on the left side of my neck. I have also been unbelievably tired so that I have actually had to force myself to join Zane during half of his nap in order to make it through the rest of the day. I have been back and forth to my GP several times doing all sorts of testing (TONS of blood work, x-rays, CT Scans & an MRI - the MRI was a terrible experience. Not because of the closed in tube but the absolutely unbearable noise!) All came back with a negative reading. I was supposedly ok BUT I still had these crazy large lymph nodes that were getting larger and more tender. So, my GP sent me to an Ear, Nose and Throat specialist. She put me through all sorts of more blood work all with negative results with the exception that my Epstein Bar levels were elevated. Nothing anybody was concerned about but at that point most were convinced that the problem was some immune system dysfunction. I was too, but I also had this feeling like I needed more convincing of that mainly because all through this the words "lymphoma or leukemia" kept coming up but no biopsy was in motion. My ENT just kept telling me to come back in 3 weeks so she could follow-up and measure the nodes again. Oh, and she told me not to touch them (so easy with a 19 month old, right?).

After several weeks of this game she said she was going to send me for a white blood cell count. If it was elevated she would biopsy because that could indicate possible lymphoma and leukemia. (WRONG!) Well, my blood work came back fine and at that point we had our words because of her handling of getting the results to me which (THANKFULLY) sent me on a mission to find another ENT. I just wanted someone to look at me and tell me, "no, you do NOT have cancer and I know this because...". But also, come to find out that blood work of any kind can only have indications of 2 types of cancer... leukemia (so we ruled that one out) and prostate cancer (no worries here!). But I did not find out this news until I ventured out to my second opinion. This blood work in no way could rule out any sort of lymphoma!!

So at the recommendation of my boss, Larry's wife, Denise (they have both been my angels on this journey) I went to see a new ENT that changed my life forever in so many ways. In one appt. with him he listened to the history and took one pat-down of my neck and knew I had lymphoma of some type. Of course he didn't tell me that then, but he immediately wanted me in for a biopsy (full removal) of two of the nodes. I went in to him on a Thursday and the next Tuesday he was cutting out my lymph nodes. He was not messin' around. He even had this all set up so that they did a frozen section right away on the lymph node and were able to tell in 20 minutes if it showed any signs of lymphoma. When it did, he had them follow up with a bone marrow aspiration so that could be done while I was still under anesthesia (thank you, doc!). The bone marrow results would be an indication of whether I was a possible stage 4 (there are 4 stages of Hodgkin's lymphoma and 4 being the worst because it is in your bone marrow).

I awoke from the surgery and my mother and grandmother, Varrell, walked into the room immediately and all I had to ask them was, "Did they do the bone marrow?" I have recovered from the surgery and the ENT did a fantastic job on the incision. I believe that it will result in only minor scarring. You may not be able to see it in a couple of years. BUT, not sure about the rest of me...

(Me after my surgery with my crazy tube going into my incision! Crazy! That is no longer around, thank goodness!)

I am now with a terrific oncologist here in Naples. The next step is called "staging." They have to determine what stage I am. Like I said before, there are 4 stages with Stage 4 being the worst. We will see, but it is good to know right away that it is not in the bone marrow. It is also good to know that this is the most curable cancer there is. I keep saying that it is so odd to say this, but if you are going to have a cancer, then this is the one to have. They have come a long way in the past 20 or so years with the treatments of this cancer and the goal here is to actually reach a full cure (not just remission). But really, no one will know. Only time will tell that one.

So I have been totally overwhelmed by testing. I have had blood work, Neck CT, Chest and Abdomen CT. I go in this week for pulmonary function testing and a full body PET scan.

I have had an enormous amount of support and help. Paul has been so strong through all of this and has been my big positive rock. This is totally scary but what can we do? We just have to do.

My family has been incredible with strong support from my Mom & Pete. My Mom along with Paul will be going with me to most of my important appointments mainly because there is just so much information that I actually feel like I NEED 2 more heads working on this keeping track of things and asking questions. That is, when the poor Mama gets over pneumonia! I tell you, what is happening to us??!!??

I have an amazingly strong and powerful "Gradeau," (Varrell, Pete's mother) who talked to me and kept my mind occupied while I waited for my surgery to begin and waited with my Mom and helped her absorb the news from the doc. I just cannot love her enough. She cooks us homemade chicken soup that is just the most relaxing thing in my house right now.

Like I mentioned before, Denise, the wife of my amazingly supportive boss, just so happens to be an oncology nurse. She works in the office of the doctor I am going to see and she has been an angel to me... Sitting in Starbucks with my Mom, Paul and me for 3 hours answering question after question and more. She and the other nurses watched Zane for me for almost 2 hours during my first appt. with the oncologist (Zane was SO good and such a super-star! I think they will have him back again). Never flinching when I call her at 10pm with the news that I had a rash covering the whole top half of my body that was making me crazy with itch, heat and pain. (Possible reaction from injections from CT Scans... GREAT! I have to have these a lot, I think!) Dealt with that this weekend when I thought we would have a quiet, non-medically focused weekend! She has been great and I get to see her positive, smiling face every time I walk into the doctor's office. Can't beat that!

I have had such support from great friends and wonderful phone calls from so many cool and wonderful people. I am sure I will need more.

Beyond the obvious, I have had to deal with the reality that I was being forced by this disease to wean my son (and me) from breastfeeding. It has been over a week now and so far until recently has been rather easy but now I think the loss has kicked in the for poor kiddo. It wasn't something that he needed often but it was a thing that he looked for in times of exhaustion, hurt or when he just needed to cuddle and be loved. Me too. This has been supremely hard.

So now we wait till these tests are completed and we wait to hear the course of action. It will definitely be chemotherapy with possible radiation. Time frame could be anywhere between 5-10 months.

So, some of you may wonder what the hell I am doing publishing all of this on our blog. Well, I thought about it a lot and we have many reasons. Number one reason is, this is what is going on in our lives right now. This is the most important thing we are dealing with right now. Also, this is a really good way for my to keep everyone posted on what is happening. I will try my best to do some posts to update. It really is my goal but honestly I don't know what to expect. Maybe some of them will be really short and to the point. Hopefully I will find the energy and time to throw in a bunch of fun ones too! We all love to look at that sweet boy's face!

I want to try and document this stage of our lives. Because it is an important one and it is one where we will look back and be able to know how strong we all are and how lucky we all are. This is my way of documenting as you all can tell by now.

Also, I think it is important to get it out there that this is really possible. It can happen to anyone. Don't hesitate to go to the doctor for something that is bothering you. Don't hesitate to switch doctors when you are not happy with one. Get a second opinion.

Most of all, have so much fun and love those around you. Really cheesy but really, you just don't know what is around that curve ahead. It could be anything.

This also could be great therapy for me. Maybe for us... who knows, maybe Paul will start doing some blog posts!!! :)

Love to all and good thoughts.
We can beat this thing.
We will (but it will be a long, tough road!).

But of course! I would not leave you without some happy images of his "royal cuteness!"

Zane is ready for the bumpy road ahead!
Take a look at his new helmet he is sporting! What a rad kid! Check out those muscles via the muscle-shirt! And is that an ankle bone we see?

Zane can always be counted on to have fresh, organic fruit "on hand" to help you along the way!