Tuesday, March 31, 2009

Is this just normal curiosity?...

I don't know if I have mentioned but I plan to print this blog as a book for Michael when we are done with chemo. And since chemo has been pretty routine lately, I have decided to share some Michael stories with all of you that I find humorous or meaningful that I would like to be remembered. Here is one of those stories.

Michael seems to have a lot of questions lately about what happens when we die - and he has only had more since we lost Chance. Not in a scary way but just in the curious way of a five year old. And I am trying to decide if it is an "age" thing or an "I have a bump in my head and spend a lot of time at the hospital" thing. I know I am probably worrying about nothing but Michael first asked about dying on July 22, 2007 so it is kind of a sensitive subject for me.

"How in the world can she remember the date?" you may ask yourself. Well, let me tell you the story.

Michael was 6 months old when my mother passed away. She and I were very close and the thing that made me the saddest about her passing was that Michael would never have a chance to know her and vise-versa. When Michael was born, my mother knew her time with us may be short so she always wore Vanilla Fields perfume when she was around Michael so that whenever he smelled vanilla, he would subconsciously remember her (she had read that somewhere).

In my own way, I have tried to keep her alive for Michael by showing him pictures and telling him stories about her. To explain where she was now, I simply told him that she had been very sick for a long time, had gone to the hospital, and they couldn't make her better so she had gone to Heaven. (Can you see where this is going?)

Well, the very first night we were in the hospital in Rochester (July 22, 2007) it was just Michael and I in his hospital room. Everyone else had gone to the hotel so he and I were settling down for the night. Out of the blue he innocently asked me "Mommy, why do people in the hospital go to Heaven? Why can't they just go home?"

He had voiced my worst fears out loud and I remember feeling my heart sink. And I knew what his sharp little mind was thinking - he had been sick for a long time, he was now in the hospital and...

To be honest, I can't remember what I told him but whatever it was, it satisfied him because he laid down quietly and went to sleep. I, on the other hand, sat by his bed in the dark and cried for hours.

I am happy to report that Michael now understands that the kind of sick my mother was and the kind of sick that he is are VERY different and that he will always be coming HOME from the hospital. Since that night, he has asked about cemeteries and what happens when people die - just normal curiosity. But lately he seems to be asking with more frequency.

My Dad has kept my mother's remains with him - in a box, on the dresser in the bedroom they shared. Someday, when the time comes, they will go to the cemetery together. That's the way he wants it. Whenever I visit Dad, I make a point of going into the bedroom and paying my respects to Mom.

A couple of weeks ago, as I was saying hello and telling her how much I missed her, Michael wandered into the room. He asked me what I was doing and I explained to him that the blue box contained the remains of my mother and I was visiting with her. He said "oh" and went back to the living room to play with his toys or try to make friends with the cat or eat Dad's cookies or something.

A couple of weeks later, I was watching a news program and a gentleman was talking about his late wife and showed the box with her remains. Michael looked up from the picture he was drawing and said "Look Mama. That is just like your mother."

"Yes. It is," I answered.

And with that, Michael went back to drawing. Then, without looking up he asked the question I had been both waiting for and dreading. "How did they get your mother in that little box?"

I have always been honest and straightforward with my children and my mind raced on how to explain cremation to a 5 year old without totaling freaking him out. I took a deep breath. Looked him straight in the eye and said "I don't know Buddy."

He thought about that for a moment and said "Oh. Well. Pop-pop is old so when he dies we'll find out how they get them in that little box."

I guess I should be comforted by the casual way with which Michael asks his questions. On the other hand - Dad's afraid that Michael always gets what he wants and Michael wants to know how they are going to fit him in that little box...

Please keep Michael in your thoughts and prayers, JoAnne.

Thursday, March 26, 2009

We're in the home stretch...

Michael had his third to the last chemo treatment today. We had a nice surprise when we arrived at the hospital - Bearamy, from Build A Bear, was in the unit and he had a stuffed friend and an outfit for each of the children there. Michael chose a bunny and then dressed him in a soccer outfit complete with a ball and shin guards.

There were no problems with his blood counts or the medications today but he seemed very tired all day. And when we were leaving the hospital, he was having a problem lifting his feet. He tripped a couple of times but was holding my hand so he didn't fall.

A similar thing happened last week. After we got home, Michael was watching one of his favorite cartoons while I made dinner and I heard a loud "thud". I hurried to check on him and found him on the floor in front of the TV. He always dances during the theme song to the show and when he tried that night, he fell because his arms and legs were "too heavy". Dr. Kennedy feels this is a side effect of the Vincristine and since he will only receive that particular drug one more time, hopefully these feelings will go away very soon.

I also learned a valuable lesson last week that I would like to share with you in hopes that you will learn from my mistake. If your child likes to snuggle in your bed during the night and if your bedroom has beige carpet and a white quilt - Do Not, under any circumstances, feed your child spaghetti with tomato sauce and strawberry ice cream for dinner if there is any chance he may be ill during the night. Yep - I learned that one the hard way. When Jeff got home from work at 12:30am, he found Michael throwing up, the washing machine running and me scrubbing the carpet next to the bed.

Michael was still vomiting when the sun came up so we kept him home from school on Friday. Jeff was home with him and our little buddy was finally able to keep some Zofran down in the early afternoon so by the time I got home from work, he was back to his old self. He had no problem taking the Zofran tonight so I am hoping tonight goes better than last week. If not, we had a very bland, colorless dinner tonight!

I moved next week's treatment to Friday since Michael is in a square dance demonstration at school Thursday night and we don't want him to miss it. I've had some computer problems of late so I don't want to download any of my pictures right now. As soon as I fix the problem, I do have some pictures to share with you. In the meantime, please keep Michael in your thoughts and prayers, JoAnne.

Monday, March 9, 2009

We're breathing a sigh of relief...

Last week, Michael came down with a cold and has been fighting a fever since Thursday evening. And since his counts from the last chemo treatment were 550, that meant if he fever went above 100.4, we had to discuss him being admitted to the hospital. Fortunately, his temperature went as high as 100.4 but no higher. And since yesterday, his temperature has been normal. Phew! But, judging by the little bruises all over his body, I have to say that his counts are probably still very low.

Michael's appetite has been terrible also. He is complaining that things taste funny to him and is even turning away from his favorite foods. He lived on grapes, bread and butter and cranberry juice for most of the weekend. And he insisted on taking bread and butter instead of a sandwich in his school lunch today. I am happy to report that he ate a great dinner tonight so I am hoping that we are over that hurdle also. He has lost over 2 pounds that we now have to work on putting back on.

Michael went back to school today (I kept him home Friday) and had a great day. When I picked him up from the after school program, he took me to his classroom to show me that he had won a weekly award from the Physical Education teacher. I am so proud of him! In spite of fighting a brain tumor and enduring chemo, his attitude in gym class was awesome enough for the teacher to recognize him. I will share a picture of the award if he gets to bring it home.

Please keep Michael in your thoughts and prayers, JoAnne.

Wednesday, March 4, 2009

A heavenly email from Michael...

We went to the school tonight to sign Michael up for t-ball this summer and on the way home Michael noticed a very bright star. He decided that this star was actually God and that my Mom and Chance were with him looking down on us. He blew 2 kisses to the star - one for Mom and one for Chance - and then asked me if we could send an email to God. I told him we would give it a try and here is what he has to say: (I'll wait while you get some tissues)

To: God

From: Michael

Dear God,

Please say hello to Chance and tell her I love her and miss her very much. And please say hello to my Mom's mom for her and tell her she loves her and misses her, too.

Love, Michael.

Please keep Michael in your thoughts and prayers, JoAnne.

P.S. When Michael started to get a fever last weekend we were afraid he might have to be admitted to the hospital (because his counts are so low). We decided that would have been a more complicated trip if we had a puppy to worry about so we have decided to wait until the end of chemo to bring a new friend home.

Monday, March 2, 2009

No fever today...

Michael had a good night's sleep and when he woke up this morning his temperature was back to normal. I think he may have just gotten worn out from playing hard with his siblings all weekend (they were home). So, he went to school today and he said he had a great day. Today was his day to bring snack for the whole class so he took Lemon cookies for this week's letter - "L". Please keep Michael in your thoughts and prayers, JoAnne.

Sunday, March 1, 2009

Dog tales...

Michael decided our four legged house guest needed a name and we should call her Big Dog. She slept soundly on Michael's bed with him until the wee hours of the morning. When Michael made his nightly trek into our room, Big Dog was right on his heels and she promptly settled into Chance's bed.

I was really concerned that Michael would get too attached to her but he was fine when we took her to the SPCA early Saturday morning. He was just worried that her "real" family was looking for her. Actually, it was Jeff that became very attached to the dog in the short time she was with us . We talked about keeping her if we couldn't find her family but, to be honest, I am glad it didn't come to that.

As soon as we walked in the SPCA, the guy working there said he recognized Big Dog (her real name is Harley) and that she was a "frequent flyer." Apparently she escapes from her owners on a regular basis and whoever finds her brings her back to the shelter. That means if we hadn't found her family and had adopted her, we probably would have spent a lot of time searching for her. (And that is stress I just don't need.) So, for now Big Dog is back with her family and we are looking for a new member to add to our family.

Jeff and I both love Golden Retrievers and we know they are a good dog around children. We have been in contact with a couple of groups that rescue dogs -one in Connecticut and one in Tennessee - that currently have golden mix puppies looking for forever homes. These groups have networks of volunteers that transport the dogs so getting one brought closer to us shouldn't be an issue. I'll let you know if one of them works out.

I have to share a funny story about our trip to the SPCA yesterday. Michael LOVES cats but I am deathly allergic to them so we can't have one. Michael really bonded with one of kittens waiting to be adopted at the shelter. He asked me if when I die, will I still be allergic to cats and I told him that no, I wouldn't be. We had told him that when you die, whatever was wrong with you goes away and you are all better. That in heaven, Chance's legs are all better and that she is happy running and playing with all of the other dogs. So Michael turned to his father and asked, "When Mom dies, can we get a cat?" I would be offended except Jeff told him they could just trade me for the cat and Michael got upset and said he would rather have me. (Phew - that was close.)

Now on a serious note - Michael isn't feeling well today. He was fine all weekend but when he woke up from an afternoon nap, he started complaining that he didn't feel well and was very tired. He can't be more specific on why he doesn't feel good but he does have a low grade fever of 99.6. Since his temperature is below 100, I 'll keep a close eye on him and call Syracuse first thing in the morning to see what they think. I know his counts were very low last week so I am a little worried. I will keep everyone posted. Please keep Michael in your thoughts and prayers, JoAnne.