Day: September 28, 2010

It will always be Maya and Woody or Woody and Maya

My feelings have been getting hurt a lot over things lately. Things that normally wouldn’t bother me, but they do now. I’ve been struggling with all of these new feelings and have felt guilty  thinking I was being selfish and mean for having them. I now know that these feelings are normal because of what we are going through. I found a guideline today while reading the online handbook. It made me feel as if maybe I am not losing my mind. If anything, I am more in tune with what is the appropriate way to act when handling our situation. Most people do it with such grace and ease…. some not so much. I wish I was more “guy like” and could just brush certain things off. I’m not that way at all. I sit and think about things too much and it is a waste of time and energy. I’ve got to let some things go and spend time on things that are important to me now. I can’t be dealing with other B.S. That’s all I’m saying about that because as I said before, it’s not worth my time and energy. I know what is true and what is not.

Today, I got a call from one of our nurses, “A.” Yes, that is really what she is called. Her real name is something else, but she has been called just “A,” ever since she was about 4 years old. She called to tell me they have set up Ronan’s scans. His first one will be this Thursday and his second one will be next Thursday. My stomach dropped just hearing that they are set up. I know I have been waiting for this but I feel like the not knowing part is almost easier at this point. It’s like I am in a protective bubble and when those scan results come back, it’s going to pop. We are hoping that the results will show that the shrinkage of his tumor  is about 20-25%. We are praying and praying hard. What we are doing has to be working. Ronan will have to be put under with anesthesia both days. I hate that part but I know Dr. Maze will take good care of my little seal. He won’t let anything happen to him so that makes me worry a little less.

Tonight, Woody and I were able to get out for a few hours. We went to meet our friends, Kenny and Stacy Frakes for dinner. As we were walking to AZ88, holding hands… I closed my eyes for just a second, took a deep breath, and pretended that we were on one of our normal weekly dates that we used to have and that none of this was happening to us. It was just Maya and Woody and nothing else mattered or existed. For those 10 seconds, I felt such bliss and happiness. I felt connected with my husband and it felt really good. We met our friends, who we have not been out with on a double date with in a good 5 years. Which is so sad. Another one of those times in your life where you get too busy and always say you are going to meet up and never do. What a waste of years without good company. Kenny and Stacy are the kind of friends where 5 years can go by without seeing them and then 5 years later you meet up and pick right back up where you left off. Woody and I had the best time with them tonight. We got to act like a couple again and enjoy being out with our friends. We talked about everything from Ronan to Bob Dylan. Tonight was an absolute joy in every way. I also love that Kenny and Stacy are not the kind of friends who run away and disappear after something like this happens. If anything, it made them want to see us more because they truly care and love us. We knew them before were married, and have always held them close to our hearts. I am so glad Ken got in touch with Woody and we set something up. It was so healthy for us to do something like that. I actually saw Woody enjoying himself tonight. I have not seen that side of him in 7 weeks. It was beautiful, refreshing, and made me all warm and fuzzy inside. We need to take time to do things like that more often. I was not ready before… but I feel like I am now. Woody and I are the foundation of our family. We have to love, cherish, and take time for each other. We are going to try harder to work on that. This won’t break us or our family.

Nobody can do everything, but everyone can do something

I came across a handbook written by parents dealing with Neuroblastoma. You can read it here if you would like. I know  most of you don’t understand the medical things that I talk about…please, it is still like a foreign language to me and I am the mother. If you would like to know more, this handbook is a very good source of information. Just copy and paste the link.

Click to access file_72.pdf

I wish I would have found this at the beginning of all of this. It is full of everything I could have ever wanted to know about Neuroblastoma. Everyone has been asking how they can help and we are so lucky for all the help people have been going above and beyond for us. I found a list in this handbook and it was helpful to me, so I hope it will be helpful to all of you.

When a child is diagnosed when cancer, people instinctively want to help.  Many families have found it useful to appoint a close friend or family member to coordinate offers of assistance.  The lists below are based on the experiences of an Aunt who assisted a large family over the three-year course of her niece’s illness.  Although each of these items may not apply to your situation, they may help you think of other specific ways those who offer to help can assist your family.

25 Ways to Help ANY Family Fighting for their Child’s Life

1) Bring Food Take prepared food in containers that do not need to be returned.

2) Serve a Meal Serve a meal and clean up afterward—it may give parents the only half-hour of spare time they get that day.

3) Make a Donation Donate to an expense fund for the child’s non-reimbursed medical expenses, such as co-pays, home-care medications, and travel expenses.

4) Organize Fund-Raisers. Organize a fund-raiser, so the parents aren’t forced to leave the child’s side to raise money to pay for care and medications. Remember, insurance covers only about 80% of associated costs, and cancer bills often top $1,000,000 after 3 years, depending on treatment.

5) Organize People. Organize a small revolving group to do meals or grocery shopping, etc.

6) Check on Necessary Supplies. Call from the grocery store and say, “I’m at the store…look in the fridge and tell me if you have (a) milk (b) bread (c) apples/bananas (d) lunch meat (e) butter (f) eggs(g) cereal.  Then have them check reserves on (h) pet food (i) toilet paper (j) paper towels (k) laundry detergent (l) soap (m) diapers.  Ask if there are specific brands they prefer or package sizes they need.

7) Little Gifts Mean a Lot. Presents are sweet and thoughtful, but daily necessities are also greatly appreciated. Consider a simple bag of apples and paper towels.

8) Do a Household Chore. Clean the bathrooms or kitchen, change the sheets, or do a load oflaundry. Bring the supplies you’ll need with you, and be aware that it’s often best to do noisy or disruptive tasks when the family is out.

9) Take on a Regular Task. Offer to do a weekly task like drive a sibling to a lesson, picking kids up from school, packing lunches, or helping with homework one night a week. Knowing that they can rely on you doing something consistently gives the family a little predictability. Still, you should always confirm the routine, because their lives are always “up in the air” and a medical crisis may necessitate a change in plans.

10) Help Them Think (no kidding!). Help one or both parents think through the week and obligations for the other children, such as soccer games and parent-teacher conferences.  Ask if there are insurance forms to fill out, bills to be paid, and gas tanks to be filled.  Going through a list like this can help them focus and organize thoughts that may otherwise be a jumble.

11) Take the Kids Out. Take the siblings to dinner, the movies, or another event they’d enjoy. Or if the sick child is able, take him/her to the park, or for a slurpee or ice cream cone. This gives everyone a break and is usually great quality time.

12) Pay a Bill Anonymously. Call the electric/gas/phone company—anonymously if you wish—and tell them you want to pay the current bill for the family.

13) Gift Certificates. Give them gift cards for the grocery store, McDonald’s, Starbucks, etc.

14) Give Them Supplies to Simplify Their Lives. Stop by the house with a bag of paper cups,paper plates, and trash bags to make life easier.

15) Give the Parents a Short Break. Offer to sit and read or play games with the sick child—either in the hospital or at home. An hour break from the stress of constant-care can be reviving.

16) Help Research Treatment Options, Medications, Alternative Medicine, etc. Do the Internet research that is so critical in pro-active education and care, and provide them with printed pages in a file or notebook. Highlight the pertinent information so they don’t have to read the entire report.

17) Give the Parents a Date Night. Babysit one night a month so the parents can go out for a walk, go to dinner, or see a movie.

18) Thank-You’s. Provide stamped thank-you notes and offer to write some for them.

19) Help with Pet Care. Take the family pets to the groomer or to the vet for checkup/shots

20) Help with Car Care. Take their car to the shop for inspections and repairs, or fill up the gas

tank and run it through the car wash.

21) Help with Kid Care Needs. Take the kids for haircuts, medical checkups, and shopping for clothes, shoes, school or camp supplies they need.

22) Help with Holidays. Help pick up holiday gifts and wrap them, or offer to put up their decorations.

23) Support the Mom and the Dad. Determine the best way to emotionally support each parent separately. Mothers may want to talk, bake, rest, or shop; fathers may prefer to a chance to play golf or go to a ball game.

24) Help with Financial Chores. Offer to come balance the checkbook, make deposits, pay bills, or just organize the medical bills.

25) Help with Seasonal Household Chores. Make sure the walks and drives are plowed in winter, grass is cut in the summer, and leaves are raked in the fall.

I am not good at asking for things. To those of you who have been helping and offering to do anything and everything for us, please know that we are so thankful. I think about you all everyday and how lucky we are. For those of you who want to help, but don’t know what or how to offer; because our situation is overwhelming and scary, please just ask. Most of the things on this list are really good ideas. One of the biggest things I can ask of you to do for us is just pray and send us your good energy. I truly believe that will get Ronan through this!