Journal


Nice surprise

posted Oct 6, 2014, 6:28 AM by FightingFor Mya

Had a nice surprise today. Went to visit Mya's grave with a friend. As we were pulling up, we saw another car was stopping there as well. I approached the car and there were two women inside. I said hello. One of the women said that it was so sad that the little girl buried there was so young when she passed. I agreed with her. She then asked me if I was the mother. I told her that I was. Both offered me their condolences and I thanked them. They said that they had seen her obituary in the paper. They didn't stay more than a few moments, said they didn't want to intrude.

It made me realize again how many people were touched by my daughter. Felt really good. It was such a beautiful fall day today...

Feeling our way...

posted Oct 1, 2014, 3:14 PM by FightingFor Mya

We met with Tasker Memorial about Mya's headstone. They will work up a design and email it to us in the next couple of days. (What did we do before the internet?!?)

We have made a decision regarding the Celebration of Life for Mya. We have decided to not have one. Originally, we were going to hold this event to give us and our families closure. However, our families were able to attend the funeral service and we were able to spend private time with Mya as well. By doing these things, we feel that we have achieved our goal of closure. So, we will continue in our efforts of finding our new family rhythm.

We will keep Mya's Facebook page and website up for people to continue to visit. Not sure yet, but might convert the Facebook page to Gia? :) we will see... :)

Love & Support

posted Sep 28, 2014, 12:04 PM by FightingFor Mya

On Wednesday, Sept. 24th; we laid our oldest daughter Mya to rest. We brought some of her favorite things to take with her on her journey. Her dress was royal purple with sparkles on it, like the stars in heaven. Our families gathered around her, talking and whispering to her that we loved her and missed her.

So many people came to say goodbye. From her teachers at her old daycare, to her new teacher at Garrison Elementary. My co-workers from my new job and many from my previous job. Ray had several people from his job attend, we even saw Mya's Oncology doctor, Dr. Julia Chu. There were policemen and firemen; it was overwhelming to see so many wanting to come and say goodbye to Mya.

One of my closest and oldest friends, Heather gave a heartfelt and touching eulogy. By sharing stories about Mya's adventures, she helped everyone smile with joy and gladness. It eased the pain a little bit, giving us a small respite.

At the cemetary, the sun shown brightly on Mya's grave. Her flowers were so fragrant, they were beautiful. We bowed our heads and sent her on to her final destination.

What now, you may ask? Well, we are taking it slow; one day at a time. For almost two years, our every waking moment was centered on Mya. Now that she is gone, we need to find a new rhythm. We will, but it will take some time. As always, we send out our thanks to all that have sent cards, notes, gifts, and love showing their support to us.

The sun is shining brightly today, maybe I'll take a walk over to see Mya with Gia. Water her flowers, tell her we miss her.

Final Arrangements

posted Sep 22, 2014, 11:06 AM by FightingFor Mya

We have set the date of Mya's funeral service. The service will be this Wednesday, 2 - 3pm, at the Tasker Funeral home. It is located at 621 Central Avenue, Dover, NH 03820. After the service, Mya's burial will be in St. Mary's Cemetary off of Dover Point Road, in Dover, NH. In lieu of flowers, we are asking that donations be made to either Boston Children's Hospital or the Dana Farber Research Institute. They took such great care of us.

There will be light refreshments served at The Oaks Golf Course (www.theoaksgolflinks.com) located in Somersworth, NH immediately following the graveside service.

Rest In Peace

posted Sep 21, 2014, 9:27 AM by FightingFor Mya

Mya passed away this morning around 9 am. She slipped away peacefully in the circle of our eternal love. We have been truly blessed to have called her our daughter. She has a warrior's heart and fought fiercely until the end. We are grateful that her battle is over and she can be at peace. We did have Mya blessed last night by the chaplain.

We will be holding funeral services for her sometime this week. We will post the information here for those who wish to attend. We will be putting together a Celebration of Life for her as well. That information will also be posted here.

We are and will be forever grateful and thankful for everyone's love and support during our family's difficult journey. Rest in Peace Mya.

Visitors galore!

posted Sep 20, 2014, 9:41 PM by FightingFor Mya

Mya had a pretty good day yesterday. We had some good friends come and visit, as well my brother Alex. Everyone stayed through the afternoon, into the early evening. While it was busy, it was such a welcome distraction. Mya was able to sleep for a bit, then awake up and visit with everyone. Her night last night was peaceful and we got some much needed rest.

Today, we had my mom come down with Gia, with some more of our friends. Mya was awake for a little bit of their visit, but fell back to sleep. Gia had the best time! She explored the room and charmed all the nurses and doctors! They stayed until about 1:30 pm or so. My brother's family and my younger brother came by around 1pm. They visited all afternoon. My neighbors and my brother-in-law were also by. Mya was sleeping when they came, but woke up for short periods of time. Then, later in the afternoon, our friends who visited yesterday came back for a second visit. As you can imagine, it has been a very full couple of days. Yesterday, Mya was able to talk and interact with everyone. Today, Mya spent the day sleeping.

We are trying to find the right level of morphine for her. It's difficult because you don't want to give her too much so she is zonked out from the medicine, but you don't want to give her too little and leave her in pain. All day we have been struggling with finding the right mixture. I was going to go out for a bite to eat, but decided that I shouldn't leave her side.

Mya's breathing when she sleeps is starting to become heavy and a little irregular. There are periods where I'm counting the seconds between her breaths. It's more than a little terrifying wondering if she is going to take another one...

We are hoping to have another quiet night.


Time's Up

posted Sep 19, 2014, 8:14 AM by FightingFor Mya

Mya had her MRI yesterday. The scan revealed that the are now tumors and disease throughout her brain and spine. The radiation sessions did shrink the tumors on her spine, but they are still there. The disease in her brain has expanded substantially. There is now tumor pushing on her brain stem, where a person's breathing is controlled. As the tumor continues to grow, the pressure will increase. Eventually, this will make her stop breathing.

Mya has been sleeping on and off since yesterday. She is now on a constant drip of morphine, to make her more comfortable. The doctors have given us an estimated timeframe of a couple of days to a week, before she will pass away.

In the past, we talked about having her at home for the end. However, after talking with the teams here and due to the short amount of time that she has left; we are leaning towards keeping her at the hospital. With the assistance and expertise of the doctors and nurses here, we don't have to worry about doing everything ourselves at our house. At the hospital, we can just focus on being with her and loving her.

We would like to thank everyone for their continued love, prayers, and positive thoughts during this difficult journey. You have truly lifted us up.

MRI tomorrow

posted Sep 17, 2014, 7:22 PM by FightingFor Mya

We made it to the Rochester Fair last Saturday. We got there early and visited all the animals. I think the cows were Mya's favorite. We saw a baby calf that had just been born the night before! He was resting after his big entrance. We walked around the midway and made it through the exotic animal area. They had a kangaroo, a zebra, and even a giraffe. After we had some yummy fair food, it was time to go. Both the girls were pooped. But, we were there for 3 hours, which is impressive for Mya.

Mya's condition has been going downhill since her school visit last Wednesday. She has eaten almost nothing by mouth, so we have had to rely of the liquid formula. We do this overnight, but complicating it is the fact that Mya has started vomiting again each and every night. So, what goes in comes out. We can see her weight has been affected a little bit, but we have put her back on Zofran to combat nausea. In the hope that this will help it. The past two days have been the most alarming. Mya is so tired, all she wants to do is sleep. Today, she pretty much slept from when I left at 6am until 1pm. Then she suddenly announced that she wanted to go over to Wendy's house (her babysitter that lives 3 doors down). Ray said ok and went to get her stuff ready. Well, Mya didn't want to wait! Next thing Ray knew, she was out the door and walking over to Wendy's house! He went out to follow her, but Wendy had seen her coming and met her halfway. Yup, that's our girl!! She stayed for a bit but was ready to coming home after a short while. She was tucked into bed by 4:45pm.

Tomorrow, we are scheduled for our 3 month MRI. The pictures should show us how or if the radiation sessions were effective. Honestly, I'm more interested in seeing the pictures of her head. I know things have changed. Because of her energy, but more importantly because of her speech. During the last day, it's become garbled, almost like a mush mouth? It's like she is having a hard time pronouncing words. She is also speaking slower. I'm pretty scared on what those images are going to show.

Last November, her Oncologist gave her 6-12 months to live. We kept choosing small goals to achieve. Let's get to her birthday (we made it!), let's get her to school (we made it!). Now, I would love it if we could get her through Halloween. I can't imagine a better Elsa.... :)

Back to Boston

posted Sep 12, 2014, 2:50 AM by FightingFor Mya

Mya went to school on Wednesday. As our luck would have it, it was picture day! So, Mya got them done. She went for half the day and was ready to come home around noontime. She took a 2 1/2 hour nap when she got to the babysitters house. I think she really enjoyed being in school with the other children. I know that she missing the companionship of being with a group of children.

Mya had her blood levels tested today and her platelets are back down to 12k. So.... That means we get to go back to Boston tomorrow. Whew! Twice in one week. I'm hoping that she won't need red blood, but we will see what they say at Dana Farber.

I'm still planning on going to the fair on Saturday. Will have to play it by ear. A week from today will be Mya's follow-up MRI. We brace ourselves each and every time. There is rarely good news that comes from any of them. Deep breaths...

Would like to plan an apple picking adventure, maybe in a few weeks; definitely by early October. Have to introduce Gia to it. I know that she will love it!

Trying to get back to school

posted Sep 10, 2014, 3:23 AM by FightingFor Mya

I know that it's been awhile since a post has been made. We've been going to Boston once a week to either get platelets or red blood. Mya's blood levels have been taking a long time to come back up. The radiation sessions were focused on her spine, which is where a person's immune system lives. So, that system has taken quite a beating. Mya's appetite had also dropped off a cliff. She would go all day without imbibing anything. It has been nerve-wracking, to say the least. Our only saving grace has been her stomach tube. We have been giving her liquid formula while she sleeps, so her weight has been stable (thank god!). The last two days have been much better. It seems like she has turned the corner. Her energy level and appetite seems to have returned at the same time.

With the good up tick, we are going to try to get her to school tomorrow. We will have her do a half day again, that seemed to work really well. I'm nervous about her going, but really, really want her to get the experience of being in school.

This weekend we are going to take the kids to the Rochester Fair. I know that the kids are going to love all the animals!

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