RockingJuJu

What a crazy weekend it has been. We got a call from TJ's mom saying they were coming for a visit! This was very exciting, as Jacey has been wanting to actually meet TJ for the longest time. Friday was my birthday and Jacey made sure I got to go out to dinner and invited everyone over for cake & ice cream. It was very sweet of her to want to make the day special for me. One of the many reasons why I LOVE her so very much! This was also the weekend for her and Phil to go to the Browns game.Friday everyone left Jacey started have an earache. I tried to give her some tylenol and hoped it would pass. It didn't take long to figure out that was not going to happen. We have been down this road of pain before and it was just a waiting game for her eardrum to rupture before the pain would stop. I felt so bad for her and nearly took her to the ER even though I knew there was nothing they could or would do to stop the pain. She was up most of the night and finally it began to drain. She slept most of the day Saturday and felt much better when she got up. TJ and his family showed up and I was so glad that Jacey was feeling better. It would have been such a shame for her to not be able to enjoy the time with them. The kids played video games and just got along like they had known each other forever. We have pictures but I have not yet got them off of the camera. Jacey had to be up and ready early for Phil to take her to the game. She was torn about going because she knew TJ would be gone when she got back. She has been looking forward to the game for so long and couldn't even think about missing it.Jacey called me when they got to the field and was very excited. They got to park where the players park. She said there were lots of really big cars and she had seen a lot of the players. I could just imagine the HUGE SMILE she had on her face. They got to go to the field and watch pre game warm up and Jacey called to tell me that she nearly got run over after a player had caught the ball...lol. I guess she knows how those poor cameramen feel now. She called me again before the game even got started to let know that her other ear was starting to hurt. I guess I should have seen it coming but had not even thought to give Phil tylenol or the earache drops. That may have bought her some time to enjoy more of the game but it wasn't even the end of the 1st quarter and she was in too much pain to stay. Phil stopped at the store and bought more drops and tylenol for the ride home.

I really hope that the doctor will be able to get her in tomorrow. She should be past all the pain but will certainly need meds to help her eardrums heal.

Everything went great with her surgery today. We will not know for a few weeks about what the spot was. The surgeon did say that it was not deep just on the surface. A lot of the hospital staff recognized Jacey today. I said that is a sure sign that we go there to often. All of the nurses are so nice and they were glad to see that Jacey was doing so well since they had cared for her in the PICU. She is having a slight amount of pain and has a nice bandage on her arm. She has to go back to see him the same day they are supposed to return to school.  I am going to try to make the appointment early but we will see.

The kids had a really good Christmas. They each got what they really wanted (thank you to Gramma & Aunt Becky). This means Jacey got her guitar and has already pretended to write a song. She was grumpy that she wasn't able to mess with it today. I told her she will probably feel up to it again tomorrow.

There is a new picture of Jacey & her cousin Angela. It was taken at the Christmas party for Adventures for Wish Kids. Justin had decided not to go with us and we were lucky enough to get to take Angela. Angela and Jacey just love each other to death. It is nice to see them together having fun. Angela was Jacey's #1 visitor while she was in the hospital. Jacey's face would always light up when Angela came.

Thanks for stopping by to check on her and we hope that everyone had a nice holiday!

Jacey had been invited to see the game on December 30th, through the Leukemia Society. The Cleveland Browns had contacted the society and offered the tickets along with valet parking, a trip to the field for pregame festivities and a suite to watch the game. Jacey has been so excited about getting to go. She was only allowed to invite on parent to go with her and she choose her dad. It will be good for them to spend the time together, though I must admit I was pretty jealous.

Jacey had the absolute biggest smile the other day. I came home and she was smiling so big I thought Jesse might have called...lol. As my eyes moved from her face I saw that she was wearing a Cleveland Browns Jersey. She spun around and there was her name printed on the back. She started jumping up and down with excitement and then ran over to the box that must have been delivered will I was gone. She pulled out a giant 3'x5' Cleveland Browns Flag and then a beautiful warm and cozy Cleveland Browns blanket. She run over to Gramma's to show off her shirt and then came home cuddled up on the couch with her new blanket. There was a cute little note card in the box that Jacey was anxious to hang with the rest of the Christmas cards. The next day she got another Christmas card with the team photo printed on the inside.

What a wonderful thing the Cleveland Browns are doing for these kids!  The invitation to the game was enough to make her bouncy and full of joy. It is just wonderful how much they have went above and beyond to bring more smiles. I am sure this will be a Christmas to remember and something to tell her kids about one day.

Christmas is just few days away now. I keep trying to push out the memory that I don't want to have. Jacey however began to get sick (yet again) 4 days before Christmas. I thought you must be kidding me. She had a sore throat and cold chills. I was very glad when she woke up the next day feeling a little better. Her throat is still hurting and I may have to try to get her into the doctor Monday. Last night she started having nose bleeds, again ARE YOU KIDDING ME?!? I am hoping it is a dry heat issue since I have yet to turn the furnace on. I am very grateful for the wood burner this year. We have never made it this long without turning the furnace on  but we have more wood than usual this year.

Jacey seemed to start feeling better as the day went on. She was not happy that we didn't got see Alvin & The Chipmunks but she just wasn't feeling up to it.

Today we are going to start our gingerbread house.  It is a nice project that keeps us busy for a few days. This has become a new tradition for us each year. We make the house and then give it away. I am not sure who Jacey has planned on giving it to this year but I am sure it will be someone very special to her. Last year the house went to her physical therapist. Jacey misses her greatly.

Christmas is coming up fast. I am glad to say that I am done shopping for the most part. We have really cut back on our spending. The kids are older now and it just seems more important to be together than focus on presents so much. Jacey's main concern is that she gets new pj's. This has been a family tradition since I was a kid. It is so cute because she gets all excited about getting to open 1 present on Christmas Eve. It is always the pj's. Last year when we were in L.A. just before Christmas Jacey knew that money was very tight. She asked if she was still getting her pj's. I told her I hadn't bought them yet and wasn't sure if I would have the time or money when we got home. Tears began to fill her eyes. I couldn't believe how much those pj's meant to her. Of course I had already bought them. It is usually one of the 1st gifts I buy each year. She has again been asking about them this year...lol.

Justin is off at Model United Nations today. This is his second year attending and he really enjoys it.

Here we are 21 months into remission. I have gotten better about not jumping every time she gets sick. Yet today I find myself back in that panic mode. Yesterday I was fine with her not feeling well. It was fine that her ear and throat hurt. It was fine that she slept until noon. It stopped being fine when she got up in the middle of the night running a fever.

Anytime that she gets progressively worse it sends me into that panic mode. I know that sound crazy but until you have watched your child have what you think is a "normal" illness and they get progressively worse over the next few days and end up where we did it will probably always seem crazy. I have a great feeling of guilt over not knowing she was dying. She told me there was something really wrong and I ignored her, just thinking she was wanting attention. That is a HUGE weight on my heart.  That 1st few days in the hospital I watched the doctors swarm around her. She was hooked up to every machine you could imagine and some none of us have ever since. How could my child be this sick, how did I not know?  I can not tell you how overjoyed I was to get her out of that ICU. To see her eat and laugh. I swore to myself that day that I would never again ignore her telling me something wasn't right.

It is hard not getting her counts as often as we used to. It is just a comfort having them drawn and hearing everything is fine. In the beginning I got that comfort every 3 days. Now it is every 3 months. If she would just not get sick I would be fine with that. I know she doesn't miss it at all. What I do know is if the leukemia ever does decide to come back it will come back stronger. I honestly don't think we will have much of a window if that happens. It is just a very scary thought and what gets me into these panics. Do I have time to wait for the rash to show up or will it be to late? It is just such a large load to carry.

What I would like for Christmas this year is:

• A cure for leukemia
• More awareness (since I know I can't have the cure)
• For people to understand

I must be getting old, every time I came to update the site today I could not remember what I was going to type.

Jacey was home sick from school today. I don't know what it is with her ears and throat this month. This is the 3rd time this month she has had some type of infection. She is back on meds even though she just got off of them last week.

Her surgery date is approaching and I just found out yesterday that the Child Life Specialist (Brenda) can't go in with her. She is not scheduled to be their until a few hours after Jacey's surgery. She is so very sweet and has held Jacey's had through every procedure. She is trying her best to arrange for someone to watch her kids so she can be there for Jacey. It is not looking good though. I told Jacey this yesterday and she is now refusing to do it with out her. She wants me to call and see if they can just do it in the office so Brenda can come be with her. I was supposed to call and look into it today but with her being home and not feeling well I just didn't find the time.

Jacey sat down with me the other night to help me get the 13 page form filled out for the late effects clinic. It made me sad when we got to the questions about how she was feeling mentally. When asked about how cancer has changed her this what she said. "I have a pet spot on my arm, I grow to much hair on my body, the hair on my head is bad hair, my eyeball is broken and I have a bunch of scars." Wow I didn't think those things were things she though about much. Then there was a series of other questions. I guess it was just a shock to me to hear some of her answers.

• Do you get upset easily? YES
• Do you sleep well? NO
• Do you worry about your health? YES
• Do you worry about your cancer coming back? YES
• Do you feel good about yourself? NO
• Do you feel depressed? ( I had to explain what that meant) YES

Phil's company may be getting new insurance. It would be a great help if they did. The current coverage is very limited and leaves a lot of unpaid bills. This is a process they go through every year and the end result is usually just keeping the stuff he have and raise the premiums. I never really minded doing the paper work for nothing but now that Jacey has been through so much it is a rather large pain to do something for nothing. I know Phil could feel my anger over it when he brought me the forms. This company wants to know who has been to the doctor in the last 5 years and why and if so what meds have they taken. I can hardly remember last year let alone 5 years ago. I must make the time to write the book about Jacey even though the want the form back a.s.a.p. Who knows how long Phil had it before her brought it to me. So if you don't hear from me for a few days that is what I am doing.

Justin is the son that every parent dreams of. He is smart, never talks back, always does what you ask of him (other than his homework) and has a huge heart. Through this whole thing with Jacey he has never once shown jealousy over the things Jacey gets or all the attention Jacey receives. I know it has been hard on him and I admire him for the way he has dealt with things. I have been spending more time with him lately since he hasn't been feeling well. It is hard to believe that he is going to be leaving us soon. I know I have 2 years left with him but time goes by so fast. Justin and I are very much a like. We both talk to much and find the same stupid things funny. We have always been very close but in the last 2 years we haven't had the time we used to. Anyway I could go on and on about how proud he makes me but....

As you may remember he had that evil rash about a week ago. The rash is completely gone and has not came back! He was also having some pain in his shoulder and then it had moved on to his hip. It seems to cause him a lot of pain and he has had a lot of fatigue as well. The doctor was scratching his head last week. All of the tests came back normal so he told Justin to take it easy for a week and see if it was just some type of muscle strain. Justin getting a muscle strain is just an odd thought. Justin does not do one thing that really involves using his muscles. He HATES sports. It was worth a shot though. No luck though the pain is still pretty constant. The doctor put him on steroids today and offered him a choice between a shot or physical therapy. I bet you can guess what Justin choose. They are also sending him to a specialist to see if they can figure it out. The doctor says is could still be a muscle strain but also said it could be Fibromyalgia. He said worst case is a growth on his spine. I put my hands over my ears when he said that one. I guess we will just see. We have the appointment with the specialist and I have to get him in for an x-ray.

I have a few updates on Jacey (nothing major) but I am going to save them for another time. It is late and I should be in bed.

Well seems we were so busy running off to see Jesse that I didn't make the big announcement that Jacey has made it to the 21st month of remission! Jacey and I were just talking last night about what kind of party she wants to have when she hits the big 5 year mark. I so badly want to press the fast forward button just so we can be there. Then I think of all the things I might miss. Jacey will be 14 when the big day gets here, nearly 15.

I am not sure if I have mentioned it but her surgery to get the famous spot removed has been scheduled for December 26, 2007. I am hoping she will have little time to worry about it with all the Christmas stuff going on. On the top of her list this year is an electric guitar. She is not expecting to get it but already has plans to put it back on the list for next year.

We went to a Christmas party yesterday. It was for Camp Quality Ohio. Jacey had a good time and didn't want to leave when it was time to go. She had been grumpy about going and I think she was surprised she had a really good time. I know she was thinking we were going to leave her there since it involved the word camp. She had such a good time she is even thinking about going to camp. I will be shocked if she does. While we were there Jacey got to meet Jennifer. Jennifer runs a non-profit site called Kids Cancer Crusade.

Doctor wise there is not a lot going on. It is always nice to say that. I have a 13 page form that I need to get filled out for her next appointment. Since she will be 2 years in remission around that time she is going to start going to the Late Effects Clinic. The clinic is located at the same place she goes now she will just see a different doctor and be checked head to toe. I understand the need for them to know some of the information but seriously it should already be in her chart. It is asking things like what type of Chemo did she get. Honestly I would have to dig way back in files to find that information. One of my favorite questions is "What are you most worried about?" Let me think about that for a second. I don't find very much comfort in the fact that there is 13 pages of things that could go wrong because of chemo. I am really putting off reading most of it.

I was wanting to get new pictures up today but they are spread out all over my hard drives. I really need to take a week and get them organized...lol.

For months I have been wanting to update Jacey's story. I have put it off because I didn't want to relive some of the memories that I knew were part of it. Through many tears I have finally done it. I have also added a section called Jacey & Jesse McCartney. If you have ever wondered why Jesse means so much to us please go read that story.

I am going to leave this as the main post for awhile. Please sign in to read additional updates. If you are not registered with the site it only takes a few minutes to do so. Once you register sign in and be sure to click the box that says remember me before you login in and it will sign you in every time you visit the site.

Thanks for stopping by to check on us!

I am so tired and was awake for over 24 hours. It was worth every minute just to see Jacey's face light up! It is something to see how much she has changed over the last year. It seems odd to be so happy that her hair has grown so much. She has gotten taller and lost some of her little girl features. She has become so well composed in the presence of her idol. Jesse just makes her so very happy. I would drive to the end of the earth just to see the smile he gives her.