Journal

Journal

Welcome to our Journal! This page shares with you the last post we made on our Caring Bridge website. Caring Bridge is a wonderful application and resource for families looking to communicate with others.

Mary was diagnosed with cancer on 7.23.2008. Our first Caring Bridge post was just less than a week later. We continued to post on Caring Bridge through Mary’s passing on 7.30.2009, and the months afterwards as her surviving older brother Will and parents dealt with grief. Christine and I wanted more than one child, and wanted to give back to Will a sibling that he lost. We were excited to become pregnant with twins! We posted updates on our family through the birth of John and Katie on 8.14.2010, and made our final post on Caring Bridge on 10.23.2010.

You can read our complete journey at: http://www.caringbridge.org/visit/maryokeefe – visit the “Journal” Page and Sort by “Oldest to Newest”

We hope you will participate in our upcoming event to help support children and families that are experiencing what we did.

Below is our last post, summarizing the life of our beautiful daughter:

Last post…

On March 4th, 2006 the most wonder gift entered our lives; Mary Jacqueline O’Keefe. I just couldn’t believe how wonderful her arrival was.

Mary was born naturally, and it was a much easier delivery than her big brother Will. As I watched her come out I noticed something quite different than my previous experience – she didn’t have red hair! Wow! I forgot all about a trait that may be new and discovered at the time of her birth. For some reason I didn’t even think of her hair color – by my reaction I must have been expecting red hair. Everything about the pregnancy up to this point looked wonderful – all the tests over the past 9 months were normal. I anticipated everything to be normal and normal was probably red hair. Well it was a delight to see her hair color come popping out, and looking much like her dad’s. It was also great to note that as Mary came popping out of her mom; there was a flip of a light switch – and Christine’s nine months of nausea went away.

The nurses then cleaned Mary up, wrapped her up, and handed her to mom. Christine (a labor and delivery nurse herself) was very pleased to hold all her new baby girl. However, it only took Christine 30 seconds or less to recognize that something was wrong. Mary was turning blue. She summoned the delivery nurse back over and said “here, she’s blue, she needs oxygen”. So our nurse quickly setup up the oxygen and Mary started to look better.

Then several events ensued; x-rays, doctors called in (specialists), Mary was placed in a tank where the oxygen level was maintained at a higher rate, etc., and of course mom and dad didn’t know what to think.

Mary was born just after 3:30 in the afternoon. By early evening the diagnosed was that she had a diaphragmatic hernia. Her diaphragm, in the middle of her chest, gave way on her right side allowing her lower organs to move up where her right lung was supposed to be. Her lung was there, but it was compressed and underdeveloped because of the pressure of her lower organs.

The next 24 hours were the worst-to-date (at that time) in my life and Christine’s. I went home to be with Will and Christine stayed at the hospital. Mary was driven by ambulance (on the day she was born) to Fairview Riverside NICU. Christine was left alone at the delivery hospital. I got Will to bed and then spoke to Christine for a while that night, we were in complete disbelief. We cried longer and hard than we thought we ever would in our lives. The most beautiful gift we could ever expect had been given to us, and now her life was in jeopardy – as worst yet, neither of us were with her.

Over the next two days we took in the all the information from the doctors we were capable of. On March 6th our two-day old daughter had surgery. At conclusion of the procedure the news was good. Mary’s hernia didn’t rip but “bubbled” up into her right chest cavity. It was an easier procedure than they thought. However the doctors still said she would be in NICU for up to a month.

This was the beginning of our learning of what it’s like to have your child in the hospital for an extended stay, and it was the first collaborative efforts between me, Christine, and Mary’s grandma’s; Jackie and Anne. My mom, Grandma Jackie, lives very close to Fairview Riverside, and she was with Mary quite a bit. Everyone’s attachment to this special girl was instant and unbreakable. During this time in the hospital we could see the incredible strength she had, we saw the extraordinary life that in her eyes. There was something special about her.

Here was when the first Mary-spectacular thing that happened; Mary left the hospital in less than a week. “What! A week? What happened to being there a month?” That’s right, the doctors said she is very strong and doing incredibly well. So, for the first time in her life, Mary came home on March 11th, one week after she was born, and 5 days after major neonatal surgery. Our miracle girl!

The days with Mary became very normal. Our first summer with her and Will were great. Come September 2006; Mary started day care.

Fall 2006 through summer 2007 was a normal life any child and their family would expect. Mary did well in day care for her first year, and started to walk around by her first birthday in March 2007. Summer 2007 was wonderful as both kids stayed home from daycare with Landyn (our favorite neighborhood babysitter) as Will and Mary’s nanny for the summer. This was a great summer for us all, Will, Mary, and Landyn had great time, everything was normal. Will entered kindergarten fall 2007 and Mary returned to daycare.

November 2007 is when things started to change. Mary was about 30 months old and she seemed to be getting sick more often than normal. Twice I canceled my late fall deer hunting trip and never ended up going at all for that late-season hunt. More often we had to pick up Mary early from day care, or she was sick again and even couldn’t go in the first place. That caused Christine and me to call in sick from work and cancel other plans frequently. Mary kept starting antibiotics every 3-4 weeks or so to clear things up and feel better.

By February 2008 we felt that being in daycare was just too much for Moon, so we pulled her out and Grandmas Jackie and Anne took shifts watching her during the week so she could remain home – away from all the germs. Throughout this time Christine was visiting the doctor quite frequently with Mary. She was very adamant about solving this issue – we felt these series of illnesses are occurring more frequently than normal – something else must be going on. We finally got Mary hooked up with an “immunization” specialist, but nothing of significance was discovered or clued us in.

So keeping Mary home from daycare with the Grandmas worked well. Mary was sick a lot less often. The Grandmas worked hard for us, and it was full of joy – Mary was easy to take care of and she was fun to be with. We then returned Mary to daycare in late May. It only took a week or two and Mary was sick again. Christine’s sense of urgency continued to escalate, but still no substantial response from Mary’s doctors. We then pulled Moon out of daycare after just returning for a week or so.

Being home in June helped but we were not satisfied with that as a solution. Come early July Mary got a fever that she just couldn’t shake – the antibiotics that cleared it up countless times over the past 8-9 month weren’t doing it this time. We received direction to go to the Emergency Room at the University of Minnesota Children’s hospital, July 17th – Will’s 6th birthday. From the 18th to the 23rd they did scans and test that concluded on 7/23. The diagnosis was that Mary had Stage 4 Neuroblastoma. On Monday, 7/28 Mary had a port catheter put it her chest for Chemo treatment, a biopsy of her tumor in her neck, and a bone marrow biopsy completed. This is when our CaringBridge log began.

August through December 2008 we had 5 rounds of chemo, and a stem cell harvest that went very well in September. Prior to Christmas Mary had her tumor removed and then a 6th round of chemo in early January.

In February 2009 we had the BMT – an aggressive dose of chemo that requires her stem cells replaced (from the September harvest) to enable her to rebuild her own blood supply. The first two transplants failed to take; the third took and allowed us to finally return home after 9 weeks in the hospital (twice as long as expected).

The next 6-8 weeks that followed just might have been the best period in our lives with Mary. Her hair was growing back, she was getting very strong, and she was enduring the radiation therapy well. I couldn’t help to feel a bit concerned about the 4-5 week delay we had due to the stems cells not initially graphing back to her bone marrow – and how that delayed us from moving on to the next stages of the treatment in a timely fashion. While it was great to see her hair return, I sensed that the cancer may be returning just the same. I was getting a bit anxious in early-mid June 2009; looking forward to starting the next treatment that would start the first week of July – and be the treatment intended to lock away the cancer forever. But that was not to be.

By the third week in June it was confirmed that the cancer was back, and with a vengeance. We started some other treatments that had a good track record of success, but to no avail. The doctors worked on a process that would get us out to a hospital in New York that has additional treatments available for Neuroblastoma. But we were initially restricted from those treatments because they were all “studies” with rules and restrictions as to who they can take and in what circumstances. However, we felt it was going to work out.

In July 2009 our friends helped construct a play set in the backyard for the Will and Mary, and we had a big birthday party for Will’s 7th (we had it the weekend prior to his birthday). Mary slept through first half of the party but joined us for the second half.

Saturday, July 18th Mary had a grand day. She spent the day at the Mall of America with Christine and friends. She went on the log ride several times, visited the American Girl store, and Christine and Mary had their Glamour shots taken. But then next day her condition turned worst, she was in and out of the hospital for a few days, and then was able to be home 7/23-26. This allowed her to see the wonderful garage sale our neighbors and friends had for us to fund a possible trip to New York. It was very successful.

On Monday, July 27th, Mary left home. She would never return. I took a picture of her in the car seat; Christine then took my picture with Mary. You can see in that picture Mary and I both knew this would be her last trip to the hospital. Mary played incredibly hard those last few days. My mom, Grandma Jackie, and I were with her Tuesday night; she never stopped wanting to get up and play. The same was true for Wednesday night when Christine and her friend Kathy spent the last night with Moon.

Mary passed away on Thursday, 7/30, at 2:00pm. She was 3 years, 5 months old.

Her wake and funeral followed in the days after. Christine and I will always remember the incredible amount of people that showed for either or both events, and the amount of cards we received. It was very, very much appreciated and really helped in ways I cannot describe well. You feel so weak and alone when a tragedy happens; just knowing there are people around you that care helps provide you the energy to face the next day. People told us how incredibly strong they felt Christine and I were, I know a part of that energy came from all the positive support we received.

Mary lived each day to the fullest, all the way to the end. She is smiling in almost all of her pictures, she woke up in the mornings singing, she always obeyed directions, and she was a big helper. We believe she may have known, some way, somehow, that her life was going to be limited. She was determined to not have “bad day”, ever. There was just going to be too few of them to afford to have any bad ones. I remember Christine picking me up at work to go out to lunch with Mary. Christine would pull up in her silver Passat with Mary in the back passenger seat looking out the window. Mary would be already facing out the window looking for me as the car pulled up; she always had a huge smile on her face.

Probably the best and most constructive advice I have grasped is: “remember who she was, not what happened to her.” My family shares stories of her all the time. I have shared them here on CaringBridge for the past two years, and in her Eulogy that I delivery at her funeral (and posted here August 2009).

We remember her favorite books: Good Night Gorilla, Good Night Moon, Millie Moo, Princess Baby, Dora the Explorer, and Elmo.

We remember her favorite Movies: The Brave Little Toaster, Wall-e, Wallace and Gromit, Beauty and the Beast, and The Land Before Time Series.

We remember her favorite TV Shows: The Backyardigans, Scooby-Doo, Ni Hao Kai-Lan, Curious George, and Caillou.

We remember her favorite activities: Dancing and listening to music, playing with her doll house, riding the bike, painting toe nails, playing with her toy animals, and playing with her kitchenette set.

We remember the games played with Will running around the house, making malts, puzzles, and she had just learned how to play 3-4 different games on her very own Nintendo DS.

And of course she loved her blankie – her favorite blanket that you have seen in many of her pictures.

The pains of “what were” are surrounded by pains of “what could have been.” Seeing other children at the age of what Mary “would be now” are painful. Thinking about the things and events she will never experience grab me with might and crush me from within. She never even started Kindergarten, no sports, no dancing lessons, no boyfriends, no prom, no husband, no children, none of that for her or for her family. My brother Dan suggested to me those are “false truths” – I am still too sad to capture the full intent of that meaning, other than I believe he was suggesting those are things I cannot let affect me.

These pains are however important to me, they make me feel connected to her still. It feels good to cry. Christine and I love the moments when we get pulled away in sadness because we then know she will never leave us. We call those “Mary Moments”. They are times of great sadness, remembering, and connectedness.

We are still her parents, we have 4 children, and we love them all. We will never omit discussing Mary when people ask us about our kids. Kids are the best. We sure love Katie and John; they are now 10 weeks old – and they are doing great. I would encourage you to appreciate your kids every day; there is nothing better than your children and nothing more painful to lose.

I have learned better the importance of giving, not that I haven’t given before, but maybe not to the extent I will now. I now know the value and appreciation of what is to receive from others. Our journey in the past two years has been so painful – I can’t imagine how much more terrible it would have been if it wasn’t for the help from you all, including those we don’t even know who contributed. I have more today (material) than I thought I would ever have – it certainly doesn’t hurt me to donate a few bucks here and there. Charities related to children will be those that I give the most to.

I have thoughts and memories I wish to write about every day. CaringBridge has been a great tool for me to capture most of them. I have so much more I want to say, but I can’t find the time currently. I feel my time is up on this site and it’s time to move on. Christine and I are on Facebook. I find it helpful to write and hope you stay tuned periodically. It will probably take me a few months to get this new site rolling – things are really busy at home with the twins.

We look to move forward in our lives with more of your typically family activities and plans; soccer, school, swimming lessons, vacations, etc. However the past five years with Mary will be engraved in our memories forever. She was the best.

“I not poor thing, I Mary Moon” – Mary Jacqueline O’Keefe, spring 2009

Thanks for your help and following our journey,

-Peter, Christine, Will, Mary, John, and Katie