Sunday, December 9, 2007 11:01 PM CST

O.K., so I realize it has been FOREVER since I last updated...sorry! I just find it difficult to find the right words sometimes. Like right now, for example, as I just wasted five minutes staring at a blinking cursor.

Four years ago, we started on this strange and horrific journey. I remember driving to BG from the hospital on November 10, 2003, knowing my son was deathly ill. Numb, I was numb...numb from the news I knew...cancer. Numb from restraining the frail 3 year old, as nurse after nurse tried to access a vein. Vein after vein blew, as he was so, so sick. All he could muster was, "owie, owie," as a tear rolled out of his bloodshot eye. His platelets were so low he was bruised everywhere, his lips were bleeding, and his poor eyes...

My world stood still. Yet, back in BG, I couldn't understand how life was still going on for everyone else. Didn't they know?

I have these images burned into my brain. Some memories I try to push aside, but the pain of this journey, I don't believe, will ever go away. I not only carry Nicholas's journey in my heart, but the journey of countless others. Just yesterday, a girl from my support group became an angel. Second one in one month. With each struggle, and with each angel, my heart gets a little heavier. No child should have to suffer through this.

Four years after diagnosis, cancer has left us financially devastated. We will be moving soon...not sure where, but soon. I have a new slogan, "It's only money." Well, I didn't need cancer to show me material things aren't important. I could have figured that one out on my own!

Today, Nicholas is a healthy and happy seven year old. He is in first grade and spends the majority of his school day in the special needs classroom, as the cranial radiation he received at the age of three has left him cognitively delayed. I have no idea what the future holds for him, so I hold on to what we have today.

Really the reason I started this update was to let everyone know Nicholas will be having surgery tomorrow. Whew...what did this turn into??? And THIS is why I haven't updated in so long! So much is on my mind and in my heart and it is difficult to...well, it's just difficult.

Nicholas was originally scheduled for his surgery on October 1, but was cancelled after the anesthesiologist checked him out. He was sick then, but is doing much better now (any wood around...I need to do some knocking!). Nicholas is having two procedures done, but we are most excited about having his port removed. One step closer to being able to do everything a little boy should be able to! Please, if you can, say a little prayer all goes well for him tomorrow.

Sorry this is so long and that I was such a Debbie Downer!

Kim

Thursday, February 22, 2007 8:51 PM CST

Home, sweet home! Can I just say how nice it is to be in my own bed and not on a vinyl couch? Yes, we are home! All cultures so far have been negative, and today Nicholas's ANC was back up to 400. Still not good, but good enough to get us out!

Nicholas will be in isolation until his ANC is back to an acceptable level. This also means he can't go to school. Thankfully, Nicholas is on an IEP and qualifies for at-home instruction. Hopefully this can start first thing next week.

Other than that...not too much going on...

Oh, did I mention I am student teaching and have now missed way more than I am allowed? Hmmm...

Kim

Wednesday, February 21, 2007 12:03 AM CST

Nicholas's rough patch seems to be continuing as we are currently in the hospital! Let me just state that he is supposed to be going off treatment March 2nd. Yep, exactly 10 days before he is to be off treatment he spikes a fever. Dave took him to the local ER at 1am Tuesday, and when his counts came back the ER decided it would be best to transport him via ambulance to our hospital.

His ANC had risen from 300 in the ER to 400 in the hospital, and we thought we really had a chance to be released today. Well, Nicholas's counts came back today and his ANC is 150. This means his white blood count is extremely low, and his ability to fight infection is greatly diminished. Hmph...so here we sit. He was actually supposed to have his monthly clinic visit today and was going to have his last dose of stinky vinky before going OT, but all chemo is halted now.

Hopefully we'll find more information in a couple of hours.

Kim

Saturday, January 20, 2007 4:55 PM CST

I realize it has been forever since I last updated, but after dealing with this for over three years now I am more than done!

Nicholas seems to be doing o.k. He has continually complained of his stomach hurting throughout this phase of chemo, though. His monthly chemo appointment is on Wednesday, so we will be addressing this issue. He is currently on 125% of one of his oral chemo, and at his last appointment they raised another from 125% to 150%. I didn't think this was possible, but his counts have consistently been high and raising the dosage has yet to bring them down to the accepted level. Dave and I think Nicholas's body is finally becoming worn down from all he has been through.

Three years...and still on treatment. The good news is he is supposed to take his last chemo pills in March...so close...yet, so far away. The day after Christmas, Nicholas had his last spinal tap! When he is scheduled to go off treatment, they will perform one last bone marrow aspiration to confirm he is in remission, and that will hopefully be the end to these horrendous procedures!

Kindergarten has been difficult for Nicholas, and we are definitely seeing the late term effects of the cranial radiation he had when he was three. We are so very thankful we live in a great school district, as they have been able to address our concerns and put plans in motion. Nicholas has very little/no impulse control and needs more attention than the regular teacher can give, so since October, Nicholas has had his very own aide! He also receives occupational therapy, speech therapy, and leaves the classroom during math and language arts for extra help with the intervention specialist. This school year has been a BIG wake-up call for us to see just what damage the treatment for this dreaded disease has caused. The damage is permanent.

Hmmm...I think I will stop on this subject before I really get started. I think this is one of the main reasons I have been silent in this journal. I am sad, I am mad, and I am just so over all of this. My world forever changed on November 10, 2003. My heart aches for all the children who have to go through this, and I just don't understand why more can not be done. Little Baby Donovan, from my support group, will soon earn his angel wings. He is two. He was diagnosed with ALL at four weeks old, has endured numerous relapses, several transplants, and more pain than any baby should ever, ever go through. Please keep him and his family in your prayers.

I would like to say a special thank you to several groups and individuals who made our Christmas very enjoyable. Thank you to the Purchasing Department at BGSU, The Littlest Heroes/St. Benedictine's Key Club, and Maryanne and Patty from Youngstown State University. We were extremely worried about Christmas this year, and thanks to the above individuals and organizations, the kids had gifts under the tree! Thank you just does not say enough...

Kim

Thursday, September 7, 2006 0:01 AM CDT

HAPPY BIRTHDAY, NICHOLAS!!!!!

Wow, it is so hard to believe my baby is 6! Ohhh, I am getting old...but I digress...

Nicholas had a pretty good day today. He had chemo yesterday (last year was on his birthday, this year a day before...we're getting better with the timing!) and everything went pretty smooth. They did however switch him from Bactrim (an antibiotic to prevent a type of pneumonia) to IV Pentamidine. Both drugs have the same purpose. Anyhow, there is a syndrome some children can develop after taking bactrim, and our oncologist thinks Nicholas may be developing it. He has had a bad rash on his face and back and upper chest for some time now and her concern is that if we continue Bactrim, his reactions could become more severe. Did I mention IV Pentamidine takes at least 90 minutes to infuse? Ugh! The good part about yesterday, though, is that Nicholas got to spend a lot of time at Grandma's!

I suppose it has been way to long since I have updated, and I will have to do a journal to recap the past two months for all the speed-readers out there. Today, however, will just end with a birthday wish for Nicholas...

Six years ago today, you came into my life and forever changed my world. You are the quiet observer. Ever cautious of others, yet wanting more than anything to be part of the crowd. I am so blessed to have you in my life. I love you more than the whole wide world. Happy Birthday, Buddy!

Wednesday, July 12, 2006 11:18 PM CDT

Summer is in full swing, and we have been very busy!

Zachary’s birthday was on Monday, and it was also the start of hockey camp for him. We have had his birthday party planned for this Saturday, but his baseball game was rained out tonight and might be rescheduled for Saturday. Ahhh...nothing can go as planned, right? So, we will see...

We were able to enjoy the Fourth of July on a boat in Lake Erie. We left in the afternoon from Avon Lake, and headed toward downtown Cleveland. I really was not overly excited to go (which is an understatement), and I have decided I will never buy a boat if I win the lottery However, the trip went rather smoothly. We dropped anchor near downtown, and as night approached we witnessed an awesome display of fireworks stretching down the coast of Lake Erie.

The boys have been enjoying their baseball season, that is now winding down. Zachary is doing really well, and it is just plain fun watching Nicholas play. Last month, Nicholas had a baseball game during his steroid pulse. I knew he wasn’t feeling well, and despite the weather being unbearably hot, Nicholas insisted on playing. In the last inning Nicholas was playing third, and as the other team was about to hit, Nicholas ran off the field. I asked him what he was doing, and he said he wanted a drink of water. He got his drink, and ran back out onto the field. It was very cute, but I did have a talk with him later about why he can’t run off the field in the middle of the inning

We went to a Toledo Mudhens game two weekends ago with our oncology clinic. The kids had a great time, and we were very fortunate my parents and brother were at the game, too Meguire and his family sat beside us and it was nice to see other familiar faces. As we sat there, I couldn’t help but look around at all the other families effected by this disease.

Tomorrow is Nicholas’s hospital visit for his spinal tap. Tomorrow is also my (gulp!) thirtieth birthday. I was kind of looking forward to my birthday until I saw Nicholas’s chemo calendar. Please keep Nicholas is your prayers, and hope for an all clear on the tap.

Justice was served in the trial I spoke of in the last journal. The man was found guilty on all counts, and I am so relieved....after all this time that someone has finally been held accountable.

Thanks for checking in on us. I’ll try to update within the next several days.

Kim

Wednesday, June 14, 2006 11:41 PM CDT

Things have been a little hectic in our lives as of late. School is out for the boys, baseball has started, and my classes are winding down for the first six week session.

Following is the summary of this week:
Sunday night, after work, I drove to B.G. arriving at 3am.

Monday, I went to class, and the boys went to work with Dave.

Tuesday, Dave had to take his parents to the airport, take the boys to work with him, take Zachary to his baseball game, and then had to drive the boys halfway between Avon and B.G. to meet my mom.

Today (Wednesday), Nicholas had chemo, but I had class. I took him to the clinic, and my mom met us there. Last month, we did the same thing, but I made sure Nicholas's port was accessed before I left. Today, however, I was running against time, and my mom had to be with him when he was accessed. My mom said he did very well, but made it a point to tell me she didn't watch the actual procedure.

Thursday night, Zachary has a baseball game. However, Dave is flying to Arizona for his brother's wedding, and I have class until 9:30pm. So, once again, my mom is helping me out more than anything, and driving Zachary to his game...all the way in Avon. I honestly do not know what I would do without her! After Zachary's game, she will head back to B.G., and if everything works out, we will meet somewhere on the turnpike to transfer the boys.

After this crazy week, I am hoping to have a very peaceful weekend! I'm not holding my breath though. I am going to have to find time to write four papers and study for my finals next week...yikes!

A few closing thoughts...
11 years ago, my uncle was murdered in a restaurant robbery. All along, the family has known who the perps were, but noone was ever charged. Finally, so many years later, justice looks as if it may prevail. One of the men has been on trial, and it is finally in the hands of the jury. PLEASE say a prayer that justice will prevail. By the way, this man is already is prison for helping in a robbery in which an 18 year old girl was murdered, a year after my uncle's murder.

Pleae also keep little Angel Grace's family in your prayers. www.caringbridge.org/oh/grace.eno

Kim

Thursday, May 25, 2006 11:59 AM CDT

With the heaviest of hearts...our sweet little neighbor, Grace, earned her angel wings this morning. Please keep her family in your prayers...
www.caringbridge.org/oh/grace.eno

Kim

Sunday, May 21, 2006 1:05 AM CDT

Nicholas had his monthly chemo visit this past Monday. I also started my classes on Monday, so we had to sort out the logisitcs. Thankfully, my mom met us at the clinic so I could make it to my first class. I had the nurses access his port while I was still there...and I think Grandma appreciated that!

When we arrived at the clinic, they were all surprised to see us. Apparently, our regular oncologist wanted to see us (I am sure to address some of the issues I have raised), but I didn't receive the message, and we showed up two days too early. We saw the new onc, and everything worked out just fine. Meguir8e also stopped up to visit, and the boys had a great time together.

Nicholas's counts were high again this month, so they raised his chemo yet again. It seems like his chemo is being raised monthly, which is a little concerning. This month, they raised his methotrexate. The methotrexate causes the skin to peel on his finger tips, and can also cause GI troubles, so we will have to keep a close watch on him.

I am going to keep this journal brief, but I do have a few requests. Our little neighbor, Grace, is really struggling. She needs all the prayers and well wishes she can get right now. Grace is such a beautiful little girl. I'm not sure if I shared before our first meeting...
I had talked to Grace's mom on the phone, but had never had the opportunity to meet them in person...even though they live about six houses away. Anyhow, they went on a walk one day, and we were finally able to meet. I tried to introduce Nicholas, but like usual, he didn't say a word and ran away. Grace, on the other hand, came right up to me and said, "Hi! My name is Grace. What is your name?" Keep in mind...she is a year younger than Nicholas.
Such a small encounter spoke volumes to me of Grace's spirit. She was diagnosed with neuroblastoma several months before Nicholas was diagnosed with leukemia, and has endured so much. Please, please, please visit her caringbridge page and leave a note of encouragement in her guestbook. www.caringbridge.org/oh/grace.eno

In the last month, two children from my ALL online support group have earned their angel wings. Please keep the families of Ray and Bradley (who earned his wings Thursday night) in your prayers also.

We must find a cure to stop the suffering...

Kim

Monday, April 17, 2006 10:43 PM CDT

Do you ever have a day when nothing seems to go right? Lately, this has been the story of my life. This is part of the reason it takes me so long to update. It has become difficult for me to put the pen to paper...partly because I would rather this journal not turn into one big negative Debbie Downer.

Well...here it goes anyway...

In March, I finally took issues into my own hands regarding Nicholas's GI problems, and made an appointment for him to see a GI doc at the Cleveland Clinic. After struggling with these issues for four months, we finally got somewhere! She put him on a heavy duty antibiotic to clear the bad bugs out, and started him on probiotics. Within one week of this treatment, we could see improvement. She also ordered a TON of labwork...

I called the clinic to make sure the meds the GI doc prescribed were ok for Nicholas to take, and our regular onc actually called me back. Because we had seen the new onc the previous four months, our regular onc had no idea we were dealing with this. She even told me she was surprised she hadn't heard anything, because the new onc updates her on all the patients.

Nicholas had his chemo visit several days later, and we actually saw our regular onc. I was able to address my concerns (although I think I left out the three needle sticks Nicholas received for the last spinal tap the new onc did.) Anyhoo...I asked our onc if there was any way she could do the next LP (spinal tap), and she said she woudl be doing procedures on the Monday we needed to come in.

AND that brings us to today. Our case worker walked into our PICU room and says, "You're not going to be happy." Yep, our regular onc did not do the procedure. I was so upset, and yep I started crying AGAIN. Why did I drive two hours to go to a hospital not in network to have a new doctor not in network do a procedure that took three sticks last time? Afterwards, our caseworker walked into the room, handed me a notecard, and said, "Dr.(1) wants you to write down all the issues you have with Dr.(2)." I was not in any frame of mind to nicely write my issues, so I didn't do it.

Let me clarify several things...Nicholas likes the new onc, and actually talks to her (which says a lot, considering he still doesn't talk to our original onc.) She has an excellent bedside manner, and is very nice. My issues are: 1) I felt as though my concern with Nicholas's GI issues fell on deaf ears, and although cultures were done the first month, nothing else was done. The poor child suffered for months with this, and a trip to another doc solved the problem in a week. 2) The three sticks for the spinal tap really bothered me...more because nothing was said. I'm sorry, but I would really like to know if it took more than ONE time to hit the spinal fluid.

Hmmm...let's go back to today...after the procedure, our caseworker said, "Just to let you know, he was a hard stick again today." Our sedation nurse said, "I think she only stuck him twice, because I only opened up one other needle, and Doctor (1) and Doctor (2) are really good at using new needles if they miss a stick." It actually looks like he was poked four times! Two needles...a minimum of three pokes...ugh!

Nicholas also had difficulty with sedation today. Our sedation nurse suggested we try a different med next time because his breathing became so labored and "soupy." He was given oxygen until he woke up from sedation, but seemed ok. Nicholas has been complaining of his back hurting since leaving the hospital, so we are going to monitor him, and hopefully he will feel better tomorrow.

O.k. for your amusement only, I am going to include my other breakdown today. I've decided to take classes in BG (two hours away) this summer, because..well, you know...thousands of dollars in medical bills and gas at three dollars a gallon are not enough abuse. I dropped Nicholas off at my parents' and went to the university to make sure I had everything covered. SO, I stop at the college office to ask a question...a simple question. I tell them what check sheet I am on, that I only need four more classes and student teaching and I AM DONE! AND THEN the director comes out, and sits down beside me. It seems as though... the state of Ohio changed the standards for licensure once again, and now I need to take even more classes. I cried AGAIN! After the stuff in the hospital, and then this...UGH! The ladies were very nice, though, and they are going to try to work with me. I mean, really, how bad does a person want to teach? For all the time and aggravation and money I have put into obtaining a degree I think they should just make me a professor. I probably know more about that campus than anyone else! Just don't ask me where South Hall is...or Hayes'...or Hanna...or East... I am joking of course (kind of)!

Sorry if I have absolutely bored you to tears. I better sign off while I still have a little, teeny-tiny ounce of sanity!

Have a great week!
Kim

Wednesday, February 22, 2006 11:33 PM CST

Nicholas had his monthly clinic visit for chemo today. It went fairly well...minus my crying at the nurses desk! (How embarrassing! Let me start off by saying I didn't get much sleep last night.) Hmmm...I'll come back to that in a minute.

I was so proud of Nicholas today! He did so well with his port access! Of course I forgot to put the numby cream on his port, and it is nice for it to be on the skin for a little while to be effective. The doctor ended up taking a patient in front of Nicholas, so we were able to buy some more time for the EMLA to kick in. Anyhow, as our nurse scrubbed the area, Nicholas squirmed a bit, but when she poked the needle through his chest, all he did was say, "Ow...that didn't hurt!" Then, with a needle sticking in his chest, and blood flowing out of the line, Nicholas said, "This is fun!" Our nurse got the biggest laugh out of that! She said that she has never had a child say the port access was fun. Only my crazy child!

Nicholas is still having gastro issues, and we are still not any closer to finding out why. Going on my lack of sleep, I did get a little snippy with the onc (which I feel bad about, but my frustration level is sky high) and said in no simple terms, "This has been going on for four months now. How long should this go on before you are concerned?" On every visit I have mentioned this issue, and I told her how Nicholas's teacher told me he was in the bathroom 7 times in the 2 1/2 hours he was at school yesterday. Well, the long and short of it is that we need to find a gastro doctor...somehow...somewhere. We were not given any names, no questions to ask, nothing that should be looked at or for... Hmmm...and so my frustration level rises...

Since I am on the topic of frustration...let's talk about bills. I need someone to, "Pay my bills...pay my medical bills..." OK...that's my version of the Destiny's Child's song. Anyhoo...we have received the wonderful (um...sarcasm FULLY intended) news that our hospital is out of network for our new insurance. The hospital has not been billing the right insurance since August, so we thought the enormous bills we were receiving were still awaiting proper billing. OH NOOOONOOOONOOO, were we wrong! I checked to make sure our oncologist was in network when our insurance switched, and she was. I never thought the hospital...the ONLY hospital our onc goes to would not be covered! Alas, it is not. And now, thousands and thousands AND THOUSANDS of medical bill dollars later...well, that brings me back to crying at the nurses desk. Yes, I found out the GREAT (again, sarcasm...) news that our oncologist switched her billing to the hospital billing back in November...meaning she is and HAS been out of network for at least three months! Why in the world would a notice not be posted? Hmmm...I'm guessing we will have another several thousand to add to our existing, and what seems to be multiplying daily, debt!

So, I think we have no other choice than to transfer care...ugh!

We also found out today that Nicholas will be on 125% of his oral chemo. Since I have already turned this entry into one big gripe, well...here it goes... Nicholas's counts have been really, really good. Too good for a child with leukemia on chemotherapy. His ANC has been high since September, and this has been an issue I have raised every month. They like to see the ANC stay within a certain range, and Nicholas's ANC has been high to extremely high within these past months. When the ANC stays high, it is a good indication that the chemo is not doing the job it should be. Hopefully the 125% chemo will put his counts back into check, and this will be a non- issue.

On a postive note...we were able to see our buddy, Meguire, today! He just celebrated his one year post-transplant, and is doing so well! He looks great, and soon will be off all medications! I hold a special place in my heart for Meguire and his family, as they were the first family we met on this journey. We also went on our Make-a-Wish trips together, and it is so wonderful to see everything going so well! It is really funny to see Nicholas and Meguire together. Meguire is definately the more outgoing of the two, and they have gone from barely talking (well, Nicholas not talking) to playing together the instant they see one another! Anyhow...you can visit Meguire's Caringbridge page at...www.caringbridge.org/oh/meguire and wish him congrats!

Nicholas had his IEP assessment last Friday. It did not go very well. He is extremely shy, and about 15 minutes into the assessment, his teacher told me he was shutting down. Hmmm...we had a feeling that would happen, so they are going to try to do more of the assessment during regular preschool hours to see if he will be more open. I'll update more on that later.

Zachary is doing very well in school. He is also excelling in hockey. It is so fun watching him play, and to see all the impovements he has made since last year. He won the MVP for his team during the last game of the Canton tournament, and was so excited! His team lost and some of the kids were crying, but Zachary was beaming from ear to ear!

Now, if any of you have made it through my LOOOONG rant of a journal, I would like for you to visit our neighbor Grace's Caringbridge page. She has been having a difficult time, and could use many, many prayers! Please help! www.caringbridge.org/oh/grace.eno

Thank you!
I will try to make my next journal more upbeat!
Kim

Monday, January 30, 2006 2:31 AM CST

I suppose it is about time for my monthly journal entry. We have been very busy with work, school, and hockey.

Nicholas is doing ok, but has been hit with the cold bug that seems to be lingering in our house. He has also had some gastro issues, but our new onc seems to be dismissing my concerns. It is a little frustrating, but cultures have been negative and he is fever free, so hopefully it really is nothing!

Nicholas and I headed out to Toledo on Thursday for his monthly chemo visit. This month included his scheduled spinal tap with chemo injected in his spinal fluid. Christie and Meguire came to visit us in the PICU before Nicholas's procedure, and it was very nice to see them since we can never seem to coordinate our clinic days! By the way...Meguire is almost one year post bone marrow transplant!!!! You can visit his site at www.caringbridge.org/oh/meguire and leave a congratulatory message for him!!!

After Nichoals finally woke up from his sedation, we headed to Bowling Green to help celebrate my grandma's (aka Moey) birthday. While at my parent's house, Nicholas decided he wanted to take both of his bandaids off (one on his port and one on his back from the spinal). When he took the one off his back, I was shocked to see three needle pricks. Our clinic has a new oncologist, and she happens to be the one we have seen the past three months. The reason why we have stayed in Toledo is because of our other onc, and it seems that we never see her anymore!

I was a little miffed that she didn't even mention that she had a difficult time tapping the fluid. Our sedation nurse called the next day to see how Nicholas was doing, and I asked her if the doctor had a difficult time "getting in." Needless to say...I am a bit frustrated. I don't want to seem like a problem parent, but what are we driving almost two hours for?

On to another subject before I get too frustrated...
Zachary has a hockey tournament coming up! It is so neat to watch him play! He has improved so much, and even has several hat tricks under his belt! Nicholas would love to play hockey, but I don't think he is crazy about the skating part. Oh, and I do believe Nicholas will be able to play t-ball this year! We will have to take some precautions, but FINALLY he will be able to participate in one of the many sports he loves!

I'm going to close for now, but I will have to update more later as I have left some stuff out I am sure. I'll try to make it sooner than later! Please visit our little neighbor's caringbridge page. Grace had a rough week and could use extra prayers!!! www.caringbridge.org/oh/grace.eno.

Hope all is well!

Kim

Tuesday, December 6, 2005 2:20 AM CST

NICHOLAS IS A TWO YEAR CANCER SURVIVOR!!!!!!!!!!!

November 10th marked the two year anniversary since Nicholas was diagnosed. There are times when it seems like yesterday, and there are many, many times when it seems completely unreal. Who, me? No, I could never have a child with cancer! Ummm...yeah...I do, and so do many other parents. Children are fighting for their lives every day. Why does childhood cancer not get the same recognition as other diseases? Cancer...leukemia specifically...is the number one disease killer in children. Where is our telethon? Where are the famous people? Why is OUR funding being slashed? And why on earth is there still no postal stamp for childhood cancer???

I am so thankful for everything we have, and I, as a mother of a child with cancer, appreciate every little step along the way. Nicholas is doing well with treatment, but it is so difficult to not be angry. I saw my grandmother die of cancer, never...NEVER did I think it would strike me so close again.

The day before the anniversary of D-Day, Dave and I went to Nicholas's preschool conference. I couldn't get D-Day out of my mind, so I was already on edge. Then, the test scores came out. On almost every level Nicholas is scoring between a three and four year old. He has a short attention span, can not follow more than one step directions, is not showing a dominant hand...and on and on. Nicholas will be evaluated to be placed on an IEP, and will eventually receive services. He is now in his class as a "typical" child, but soon that label will change to "special ed."

When we left the conference, Dave said to me that it seems Nicholas froze in time. I have not been able to get that statement out of my mind. He is very much the little boy I carried into the hospital on November 10, 2003. He has been through so much, and unfortunatly we are starting to see some of the long term effects of the radiation and chemotherapy already. I can still remember the radiation oncologist coming to speak to us in the PICU, and going through all the possible side effects of the cranial radiation. Cataracts, cognitive delays, secondary cancers...but what are the chances? No one could say for certain. What we do know is that the radiation was necessary because of Nicholas's high-risk for relapse, and what we also know now is that it injured his still developing brain.

Ahhh...see, there was a reason I had not updated in so long!

On a positive note...We had Zachary's school conference the day after Nicholas's. Zachary is doing wonderfully!!! He near the top of his class in math, is very creative, and is the only child the teacher has to tell to stop writing! Zachary absolutely amazes me with how well he has coped with everything. We have had so many difficulties, and I worry that Zachary gets left out sometimes. Let me just say that after Nicholas's conference, we really needed Zachary's conference to go the way that it did!

Better go...I REALLY will try to update later...
Kim

Monday, October 31, 2005 11:56 PM CST

Happy Birthday, BopBop!!!!!!!!

Nicholas was released from the hospital on Friday, and seems to be getting a little better everyday. We will be heading back to Toledo tomorrow for Nicholas's spinal tap and chemo. Please say a prayer for a clean spinal.

I would also like to ask for extra prayers for our buddy, Meguire. He had a spinal on Friday, and the results were suspicious. Meguire has been through so much...relapse, bone marrow transplant...please, please, please say a prayer that his spinal tomorrow comes out clean.

The boys went trick-or-treating tonight. We started out going around our cul-de-sac. Zachary walked, and I pulled Nicholas in the wagon. We walked from house to house, and Nicholas would not get out of the wagon. When we visited a neighbor we know well, Nicholas stared blankly. I decided it would be best if Dave and traded posts, so Dave and I traded posts. Dave took Nicholas around the rest of the neighborhood, and I stayed at the house to pass out candy. Nicholas eventually climbed out of the wagon to go up to some doors, but would hop right back into the wagon when he was done.

He was complaining earlier today of his legs hurting, and the whole night brought me back to this date 2 years ago. That night, we took the boys trick-or-treating around my parents neighborhood in Bowling Green. It was chilly, and before too long, it was lightly raining. Nicholas complained that his legs hurt and wanted to go home. We kept telling him, "Just one more house." It is so hard to look back on that time knowing what we do now. Anyhow, it only took that little walk around the cul-de-sac tonight to take the wind out of my sail. Dawn, if you read this, I'm sorry for talking so long, and I hope Grace (www.caringbridge.org/oh/grace.eno) was o.k.

Well...I think that is enough for tonight. Nicholas and I have to be up early for his appointment. Hmmm...I'll try to make my next journal more upbeat! How depressing!

Kim

Thursday, October 27, 2005 8:35 AM CDT

Don't pay any attention to the time above. It is actually 1:19 Thursday night/Friday morning...whichever way you look at it. We are still in the hospital. I am hoping he will be released tomorrow, but I really don't know.

Nicholas had a CT scan of his sinuses this morning, and the results are that his sinuses are inflamed. Hmmm...I could have predicted that! His cough seems to be about the same...or maybe a bit worse. It is really hard to listen to, but the good news is his lungs are clear.

This morning when Nicholas woke up, his eyes were swollen, and the rash on his nose and around his eyes looked a lot worse. He now has conjunctijunk (as I like to call it) in both eyes. The poor boy looks and sounds miserable.

Now, Nicholas is on eye drop antibiotics and is still on the IV antibiotics. I just asked the nurse if he could have a decongestant(sp?) so he can sleep better. He wakes up coughing about every 20 minutes or so.

I will update more tomorrow.

Please say a prayer for our little buddy Meguire. He has been having some pains, and will be here tomorrow for some tests. www.caringbridge.org/oh/meguire

Have a good day!
Kim

Wednesday, October 26, 2005 Update
Well...so much for Nicholas doing so well. He was admitted to the hospital yesterday for fever, vomitting, and the rest of the yucky stuff that comes along with it.

This has been going on since Saturday, and on Sunday we took Nicholas to the ER. I personally think ER is short for ERRRRRRRR, because that is exactly how I felt about that visit. The new ER is nice, but it is obvious that they don't have much experience with children with cancer. Some doctor we didn't even see ordered Motrin to be given to Nicholas...which is a big NO NO for children on chemo. AND, in the two minutes it took me to get a soda from the vending machine the Motrin was given! I was not happy!

Then, blood had to be drawn for labs and cultures, and I asked if they could just access his port for the draw. Instead of using numby cream, they used numby spray that didn't work so well. Nicholas was so upset, and I think it might have been less traumatic if they would have just stuck his arm. His port is positional, and I told the nurse that we used to move him in all sorts of akward positions to get his line to work right. Well, instead of moving him, she moved the needle around and around...until Nicholas was hysterical and moved so much the needle came out. It was then that she said, "I'm sorry honey, but we don't have child-size needles." Um, ok...you could have told us that before you tried to access him. To top it off, she had to stick him again to put heparin in the port so it wouldn't clot. So, he was left with two big holes in his chest where the adult-size needles were sticking in a child-size chest. UGH!

Did I mention this occurred on football Sunday?? If anyone knows Dave, you should know he breathes, eats, and sleeps football. Well, he was sitting comfortably in the ER room, watching his dumb...oops, I mean...watching football when the doctor walked in and turned the tv off. It was rather comical, but Dave didn't think so!

The doctor asked a bunch of questions about Nicholas's diagnosis, and then asked when he obtained remission. I responded that Nicholas achieved remission by the 14th day of treatment. The doctor responded, "So, he's been fine since then?" Um, ok...no. I responded, "Well, he spent most of last year neutropenic." To which he responded, "Are you in the medical profession?" Um...ok...no! Of course I thought of all the things I should have said to him later.

What I wish I would have said:
Nicholas obtained remission by the 14th day of treatment, which put him on a different arm of his protocol. Because he was not in remission by day 7, and he was already considered high-risk because of his white blood count (greater than 50,000 at diagnosis), Nicholas was labled a slow early responder. Because he obtained remission by the 14th day of treatment, Nicholas was put on the most intense protocol and had to have 10 days of cranial radiation. It is quite possible that the cranial radiation did the damage to Nicholas's brain that caused the seizures in July 2004.
And, when your child has close to thirty different trasfusions (blood, platelets, plasma) you kind of get used to CBC results and lingo. We have spent too much time in hospitals for me to not have the basic knowledge down. Ugh! It is just so frustrating when you run into one of those great doctors with no bedside manner...and on top of everything is condescending! Anyhow...they sent us home and said Nicholas has bronchitis.

Well, it is now Wednesday, and Nicholas is still running a fever and coughing really bad. But, we are so glad to be at our hospital where we know our nurses and doctors!!! He is hooked up to IV fluids, receiving IV antibiotics, and has a pulse ox on his finger. Oh, the port access was less traumatic although the numby stuff stung the two holes he has in his chest from the ERRRRRRR. We should find out the results of the new cultures tomorrow morning, and I will try to update more then.

Hope everyone is well!

Tuesday, October 18, 2005 10:46 PM CDT

I know it has been some time since my last update, but I have been in a bit of a rut lately. Sometimes it is hard to find the words, and sometimes it is too hard to try to keep the world of childhood cancer at bay.

Nicholas seems to be doing well. He loves school, and although he wasn't too sure about it at first, he has adjusted very well. His teacher has done an excellent job of alerting us if another child becomes ill, and it so nice to know we have their support.

A couple of weeks ago, Nicholas went on his first fieldtrip with his class. It was the day after he received his chemo, so I wasn't sure how he would do, but he had a really nice time. We went to an apple orchard, and he got to pick his own apples. I took some cute pictures...hmmm...if I ever get around to updating his pics I'll put some up!

Last week was a crazy one for us. Zachary started running a fever Monday night, and it continued all week. I took him into the ER Wednesday night, which was a stupid idea because they really didn't do anything for him. Oh, just give him Tylenol and Motrin. Um, ok...but there has to be something wrong with him! I think I am getting pretty good at figuring out if something is just a virus or a little more serious, and I knew this wasn't just a virus. Anyhow...I left to go out of town Thursday night, and Dave took him to see the pediatrician Friday morning. Yep...still running a fever! They drew his blood, and several hours later the doctor's office called to say Zachary had a bacterial infection. Could they not have drawn his blood in the ER??? Yeah, make him wait several days with a bacterial infection! After antibiotics, he seems to be doing much better!

Nicholas's eyes have been bloodshot for the past several days...it is a little bizarre. I am going to call our onc tomorrow so we can make there is nothing we should be concerned about. His next appointment is not for several more weeks, and this one will be in the hospital for a spinal. If anything new springs up, I'll try to update (notice the "try"?).

Oh...did I mention...WE HAVE GRASS! It looks amazing! After a 1 1/2 years of dirt and rocks...WE HAVE GRASS! I'll add that to the list of pics I need to put up!

Have a good week!
Kim

Wednesday, September 7, 2005 10:36 PM CDT

Dearest Nicholas,

Five years ago yesterday, I went to my doctor's appointment very, very pregnant, and when the doctor told me to make an appointment for the next week...well, I about fell over. You were due September 9th, and I told the doctor I would be one unhappy pregnant lady if I had to be there the following week.

I returned to Bowling Green and decided to stop by the library to pick up some books to read to Zachary about babies. You must have heard me talking to the doctor, and I never had a chance to read those books to Zachary, as you decided it was about time.

After what seemed like many, MANY hours, you decided it was time to grace the world with your presence while everyone was eating lunch...including Daddy, Grandma, Pappy, and the DOCTOR! The nurse made a frantic call, and the doctor walked in with barely enough time to catch you. A healthy baby boy...weighing 6 lbs 15 oz...born 12:52 pm...on the seventh floor of St. Vincent's.

I remember telling Daddy that I thought you looked like an old man. But now, I really think it was your old soul that was shining through all your cute little wrinkles. Perfect.

We left the hospital two days later, and walked past the spinny doors you would later learn so much about. Perfect.

You were such a wonderful baby; with a smile and a laugh that could melt the coldest of hearts. You were my buddy...your brother's buddy.

Never in my life did I imagine you would have to endure so much. Never in my life did I imagine I would walk back through the doors of that hospital. The joy of a healthy child...gone...in a split second. Sixth floor...

My heart has broken so many times, and so many times I have just wanted to take the hurt away...the bad blood, the pokes, the sore legs, the toxic chemicals pumping through your veins, the seizures, the scars, the radiation, the statistics, the cancer... I am so sorry for all you have had to go through.

You have taught me so much in the five years you have been in my life. You have handled everything with such grace and determination. I am so incredilbly lucky to have you as my son. Happy Birthday, Buddy! I love you more than the whole wide world!

Tuesday, August 30, 2005 0:29 AM CDT

Busy, busy, busy...yep, that about sums it up! I think we tried to fit as much as possible into August. Here's a recap...

1. We enjoyed a Toledo Mudhens game with the rest of our oncology clinic. The trip to Toledo didn't go quite as planned though. We had left early enough to make it to batting practice, and were very proud of ourselves, as we are NEVER early enough for anything! We were a little over half way there when all of a sudden all three lanes of traffic on the turnpike stopped. AND I mean STOPPED!

The kids were good for about the first...oh...five minutes. Then it was, "I have to go to the bathroom," or, "I'm thirsty," or, "When are we going to be there?" Mind you, we are not moving during this time at all. To top it off, my low fuel light was on. On our way to Toledo we pass three rest areas, and I, being never one to procrastinate, decided to wait until the last rest area to fill my tank. And, it was like 95 degrees outside. We even broke down and turned the AC off for a bit (a wee bit). So, we sit there and watch the minutes tick by...well, there goes batting practice...there goes the first pitch...wait, are we even going to make it to the game? Those thoughts were squashed with, "I have to go to the bathroom!" Ahhh...nothing like a lovely family outing! Mental note to self...find some way to put a reserve tank of gas in my car for the days I decide I can make it a few more miles, and grab one of those urinal thingies from the hospital next time we are there for emergency traffic jam situations!

Alas, we made it to the stadium...parked what seemed like 5 miles away (per Dave), and made it to the game sometime in the second inning. I jokingly told Dave that the game better go into extra innings for all we went through to get there, and sure enough it did! The Mudhens won, and we were able to enjoy a post game fireworks show to which Nicholas exclaimed, “That was awesome!”

2. We went to Cedar Point this past Friday. Let me back up a little...when we went to Give Kids the World for Nicholas’s Make-a-Wish trip, we were given a passport for various amusement parks. Basically, it allows us one free visit to a bunch of different parks including Cedar Point, King’s Island, Hershey, etc. Our summer has been so busy we have not been able to take advantage of this, so we figured we better get Cedar Point in now.

Friday was the perfect day to be there (although it was really hot during the day), and the park was not crowded at all. Dave and I had not been to Cedar Point in over ten years, and it was neat to see all the new coasters. Nicholas was a little timid at first, but he ended up riding quite a few rides. I think his favorite was the bumper cars. Dave took Zachary on the Blue Streak (the oldest coaster in the park) first, and Zachary spent the following ½ hour grumpy because he said the ride was too fast. However, he did ride the Iron Dragon (twice, once with me and once with Dave), and I thought that one was too fast. At the end of the day, we talked Zachary into going on the Demon Drop. Dave went with him, and I thought that we might possibly traumatize the poor kid. For those of you who don’t know what the Demon Drop is...basically you sit in a car type thing, the car moves backwards, and then takes you up 10 stories. When the car is at the top of the tower, the car slowly inches out, and then waits...and then *BAM* you fall. Anyhow, Zachary came off that ride smiling! I could not believe it! I have NEVER gone on the Demon Drop, and here my seven year old is showing me up! He then went on it by himself two more times! All in all it was a great day for everyone.

3. Saturday, we had our annual block party. Zachary had a sleep over to go to, so he wasn’t there. We had a really nice time though, and I will try to post pictures soon.

4. Zachary started school today!!! It seems like only yesterday that he handed me his report card and asked, “Did I make it to First Grade?”

5. Nicholas starts preschool in a week! I am going to be a nervous wreck! This will be his first time going to preschool since he was diagnosed. The preschool basically said they will make any accommodation that is needed. The big thing will be keeping Nicholas free of all the childhood bugs that run rampant in schools. The bad part about the timing of all this is . . . school starts Sept. 6, and Nicholas receives his monthly chemo on Sept. 7 . . . which I might add is his birthday. So, he won’t be in school for his birthday:o( You know, last month Nicholas’s chemo visit was on my birthday . . . next month his birthday . . . ugh!!!

Oh, well . . . wish us luck! Please visit our neighbor Grace’s CB site www.caringbridge.org/oh/grace.eno as she could use lots of prayers right now. Thanks for stopping by, and leave a message if you have a chance. Thanks!

Kim

Wednesday, August 10, 2005 11:34 PM CDT

AAAHHHHH (that is actually suppose to be a sigh of relief:)
My classes are finished, and now we are back home during the week. It seems odd...six weeks of being gone Monday-Thursday. I have decided not to take classes in the Fall, as this summer was difficult enough. Nicholas was hospitalized last week for fever, and it is a strange coincidence that it was finals week for me. Something always seems to come up right when I start to believe I am on track. I think someone was giving me a little reminder that other things are more important. So...it seems I will be lucky to graduate before my children!

We took Nicholas to the pediatrician yesterday. This was the first time he has been to a pediatrician since he was diagnosed..it was a little strange. Anyhoo...Nicholas has a horrible cough, and it just continues to worsen. However, his lungs are clear which is a very, very, very good thing. He seems to be doing a little better now, but as I type this I can hear him coughing.

Tomorrow is Nicholas's monthly visit for chemo. It also happens to be time for his (once every three months) spinal tap. I do believe it was during his last spinal tap that his blood sugar dropped really low before the procedure, so I hope this one will be better. What am I saying??? I hope this spinal tap will be better?? Hmmm...the life of a cancer parent...

Please keep Nicholas in your thoughts and prayers, and home for a smooth procedure. Thank you for visiting, and if you have a chance please sign the guestbook...it so reassuring to know there are people who care!

Please visit our little neighbor's site...
www.caringbridge.org/oh/grace.eno
Grace is 3 1/2, and is the sweetest little girl. She is fighting the cancer beast too, although her beast is neuroblastoma. Her and her family live right around the corner from us, and they are now in Philly for some very difficult treatment. Please say a prayer for Grace and her family, and if you have a chance, leave a note in their guestbook!

Thanks for checking in!
Kim

Tuesday, August 2, 2005 1:09 PM CDT

Nicholas was released from the hospital today. He is in good spirits, and the fever seems to have disappeared. They had him on IV antibiotics as a precaution, and so far the blood cultures haven't grown anything...and hopefully they won't.

Dr. J did say there is some odd virus out there that seems to be striking all of the leukemia kids. That would make sense as we ran into one of our clinic buddies at the hospital...and she had been admitted this morning...with a fever! We also met a new family yesterday. It is so hard to see more famililes have to go through this.

The resident came in this morning at 8:30, and Nicholas and I were both sleeping... needless to say, she woke us up. Did I mention that I am not a morning person? Anyhow, the conversation went something like this:
Resident (speaking to Nicholas): SO, I see you had a lot of tests done yesterday.
Me: Not really, they just drew labs and cultures.
Resident: Right now the cultures haven't grown anything, and his counts look o.k. I understand he might have a bone marrow later on today.
Me: What? Um...I don't think so.

First of all, she woke me up. Second of all, I liken this conversation to the one we had with a student nurse the very day Nicholas was diagnosed. That conversation went something like this:
S.Nurse: Don't worry, I saw his chart and they ruled out leukemia.
Me: What? Um...I don't think so.

What she saw was the order sent from the peds office that stated ANEMIC RO LEUKEMIA. Rule out...not RULED out. The difference of one letter, and all the difference in the world to a family about to face the cancer battle. If you don't know what you are talking about, it is best to not say anything.

Which brings me back to the conversation with the resident. If perhaps they thought Nicholas had relapsed they would order a bone marrow aspiration or biopsy. So, when she mentioned this, the thought entered my mind for a split second...do they think he relapsed? After a brief (very brief) moment, I realized she had absolutely no idea what she was talking about. I think she mixed up Nicholas's chart with the newly diagnosed family...that just happens to be scheduled for their bone marrow today. Ugh! How frustrating!

Did I mention I'm not a morning person?

Anyhow...please say a prayer for all of those fighting this battle. Please say a special prayer for the newly diagnosed family. They have had an especially difficult time the past two weeks, and now on top of everything are dealing with a cancer diagnosis.

Thanks,
Kim

Monday, August 1, 2005 4:06 PM CDT

Well, it seemed as though our summer was just cruising along. (Screeeech!) Dave is now on his way to Toledo with Nicholas. This past weekend, Dave took the boys to upstate New York to visit family. Nicholas started running a fever there, and the fever has persisted today. I am going to meet them at the hospital, and will update more when I know more.

Please say a prayer that it is nothing serious!

Thanks!
Kim

Wednesday, June 29, 2005 1:01 PM CDT

****Update****
July 6...Sorry, I should have updated a little sooner about Nicholas's surgery. Anyhoo...he did great! He was sore for several days, but is now finding it difficult to not rough-house with his brother. Doctor's orders...no rough-housing for two weeks (yeah, right! Didn't he hear of what happened at the our appointment with his colleague??? See below if you are confused:) Now, on to the June 29, 2005 entry... Oh...HAPPY BIRTHDAY, Dave!

OK, OK...I am not updating as much as I should be. Life just seems to get in the way sometimes.

Nicholas is doing well, and both of the boys seem to be enjoying their summer so far...OR...enjoying each other's company so much that they fight every waking moment of the day! I'm not too sure which statement is more true.

Nicholas had his monthly chemo visit to the clinic several weeks ago. I pointed out to our oncologist the area of Nicholas's central line that appears to be breaking. Well, it is in fact broken and in the words of the surgery nurse...it is hanging on by a thread. It turns out that the surgeons are the only ones who can repair the line, even though it is on the outside of the body and could probably be done by a monkey if trained. So, we had to make an appointment to see the surgeon.

Because of the condition of Nicholas's line toxic chemo surely couldn't be pumped through it. The tops of his hands were loaded with numby cream (aka emla), and he knew right away that that wasn't good. I think he was having flashbacks to the painful leg pokes that are now a thing of the past. Nicholas did a great job, and only cried a little bit as they drew the blood from his hand and then injected the chemo.

The following week, we went for our visit to the surgeon. I made the mistake of bringing Zachary...I should have known better! First, let me state that our appointment was at 10:30am. We arrived several minutes early (which might be a first for me:) and promptly waited. When we did get into a room...we promptly waited. After a long while, the nurse walked by and opened the door...probably because of the commotion two little boys, who will remain unnamed, were making. OR, was it because of the commotion the mother, who will remain unnamed, was making because of the two little boys?

At 11:45, the surgeon walked in with a gang of about six, Nicholas was placed on the table, and they began examining the line. Zachary was curious as to what was going on, so he moseyed on over to the table, and leaned in...and his mouth was promptly met with Nicholas's foot! For no reason at all Nicholas kicked him! I was SOOOO unhappy with my cute, angelic 4 year-old! I still don't know if I was more mad because he kicked him, or because he did it in front of all these people! Hmmm...I think that's something I need to work on! Needless to say, I was terribly embarrassed, and didn't let anything continue until Nicholas apologized. One of the surgeons chuckled and said, "I have seven brothers." To which I replied, "Your poor parents!" Mental note to self...never EVER take both children to the doctor together...unless they are in a padded, soundproof room and their attire consists of a straight jacket...or I suppose shackles would suffice.

Oh, I almost forgot the point… It was decided that Nicholas will have his line removed, and a port will be put into place. This means Nicholas will not have anymore dressing changes, no at home flushing with saline and heparin, and no more fear of his line or the entry site getting wet. The port will be placed under the skin, and now he will need to have numby cream and a little poke in the chest to access him (or attach a temporary line) for chemo. The surgery is slated for this Friday, July 1st. Extra prayers will be needed, pelase! I am just a little nervous, especially after the episode Nicholas had before his last spinal tap. Just say a prayer that everything goes well!

Hope everyone is doing well! Oh, I did a crazy thing and enrolled in classes. I tried to transfer to CSU, but they didn’t transfer all my credits. SO, I am back at BGSU. Monday through Thursday I am in BG for classes, and Friday through Sunday I am back home so I can work. Life is crazy!

Thanks for checking in on Nicholas! I guess I do need to update more so the entries don’t turn into a book! Whew!

Kim

Thursday, May 19, 2005 11:06 PM CDT

Nicholas had his monthly visit for chemo today. Every three months Nicholas receives a spinal tap (where the doctors draw spinal fluid to check for any suspicious cells, and then inject chemo into the spinal fluid). At this point, Nicholas has had so many of these procedures that I have honestly lost count, and today happened to be one of those days. So, it was off to Peds ICU...

On LP days, Nicholas has to be NPO (nothing per oral), meaning he can have nothing to eat after 5am, and only clear fluids until 9am. Everything seemed to be going ok this morning...and we were even on time for once in our lives! Our buddy Meguire came to visit for a bit, and it was really nice to see him and his mom, Christie. After they left, Nicholas started acting...hmmm...not right.

By the time Dr. J came into the room, Nicholas was sleeping, and would not wake up. Let me just say...this was the most difficult day I have had since he had his seizures last July. There were two nurses in the room, and two doctors. Dr. J tried and tried to get Nicholas to talk to her, and he wouldn't say a thing. I tried to get him to talk to me...nothing. They tapped his leg, hard enough for him to feel it, and...nothing. At one point, Dr. J got him to open his eyes to little slits, and she asked him if anything hurt. He nodded and eventually pointed to his mouth, and then promptly closed his eyes.

After what seemed an eternity, they tested his blood sugar, and the count came back at 40. I'm not sure what normal is, but Dr. J said anything under 60 is low. They then gave him IV fluid with sugar, and slowly he started to perk up. Now, we have to figure out why his blood sugar was low. Obviously...not having anything to eat can have something to do with that, but Dr. J said that she remembered it was low during DI, and also when he had his seizures.

Normally, Nicholas receives propaphal(sp) and versed for sedation during his spinals. Today, (because of everything that happened) it was decided he would just receive versed. The propaphal is what really puts him out of it, and the versed just makes him forget what happened. I was very nervous, but Nicholas did really well! Thankfully, everything seems to have worked out, and we were sent home with a five day supply of...STEROIDS! Yep, it is that time again!

On an up note... the Country Music 1/2 Marathon was WONDERFUL! I did so much better than even I gave myself credit for. It was one of the greatest accomplishments of my life, and as I picked up my speed near the finish line, I saw Dave and the boys. I started to run past, then stopped, turned around, and picked up Nicholas. Holding Nicholas, I walked the rest of the way to the finish line, and together we crossed it. OH how I wish it was really the finish line for his journey in the cancer world. We will get to that finish line...together...some day.

Hug your children extra tight, and say a prayer for those in need. Have a good week!
Kim

Sunday, April 24, 2005 5:05 PM CDT

A week before May, and it's...SNOWING??? Wasn't it just four days ago that I was sending my child to school in shorts? What is going on? 70 degrees one day, and the very next day the temperature is close to freezing! UGH!

Ok, enough on the bizarre Ohio weather (I'm sure it will be 80 degrees tomorrow, and this will be a non-issue:) Everything is going well here. Nicholas had his monthly clinic visit for chemo on Wednesday. Yes, that does mean it is steroid time. I'm going to knock on wood while I type this, but this steroid pulse seems to be mild. There have been very few 'roid' rages, and we are so VERY thankful.

We have had several busy weeks, and I will try to give a brief recap:

Nicholas had his first real haircut in over 18 months! Yes, he has HAIR! His hair is much darker than what it once was, but after seeing him bald for almost an entire year we'll take whatever we can get! I'll have to put pictures up soon so everyone can see the new hair!

Nicholas started ice skating! He spent the majority of the first class on his B-U-T-T (as Zachary would say), but his determination has been amazing. He has improved a little each class, and has been staying of his B-U-T-T a little more.

Zachary started soccer! He has since had two games (including one Friday night in the rain and cold!), and has scored in both games. Pretty good for a child who has never played soccer! In several weeks we are going to have to somehow juggle practices and games for soccer, hockey, and baseball. YIKES! Nicholas has also decided that he wants to play T-Ball. I think we are going to have to start cloning ourselves!

Zachary's hockey team (the Ice Dogs, or Ice Dawgs...as I like to call them) played Brooklyn yesterday. It was the first rematch with them since the start of Spring hockey. The first time the two teams played, Brooklyn won...12-0, or something like that. It could have been more, but they stopped posting the goals on the scoreboard. ANYHOW, they are not the nicest team to play, and they have two children on their team who are WAY too old for the league (these two kids scored all the goals in the first game). This time around, our players did awesome! It was such an exciting game, and the final score was 5-5. By the reaction of the parents, you would have thought our team won the National Championship. Oh, but how sweet it was!

We are gearing up for our trip to Nashville next week. I think I am going to leave on Wednesday, and Dave, Donna, and the boys will fly down on Friday. Please say a little prayer that I don't come in last:) I'll keep y'all (just practicing my southern speak!) posted!

Have a good week!
Kim

Monday, March 28, 2005 0:24 AM CST

Ode to Steroids...
Yep, it is that time again. I honestly do not know how we are going to manage a steroid induced child for one week of every month for the next two years. For those of you fortunate enough to have never experienced what steroids can do to a beautiful child...well, count your lucky stars! It is times like this when all the insecurities one could possibly have about parenting multiplies and is magnified to the nth degree. Do they offer parenting classes for parents of steroid induced maniacs, uh, I mean children? I think Dave and I are both at a loss for how to handle the situation. The closest I have come to a solution is to just happen to schedule a vacation for myself (and only myself, alone, in solitude, or even a padded room would be nice) for one week...every month...for the next two years. I don't think I will ever be so lucky!

Nicholas had his clinic visit last week. Everything seems to be going ok. His ear is on the verge of becoming infected, but the description of the ear was the same as it was a month ago when Nicholas had his spinal. It just doesn't look right. He hasn't been complaining though, so we are going to try to stay away from antibiotics for now.

Nicholas is also exhibiting signs of weakness in his legs and ankles. I mentioned to our onc that Nicholas sometimes complains that his legs hurt. However, these symptoms always seem to appear at a convenient time...like when he has to walk up the stairs to clean something up, or when he has to walk down to the basement to turn the light, that he ALWAYS leaves on, off. The onc did some tests, and Nicholas is indeed showing weakness. If this continues, he will have to begin physical therapy. I hope that is not the case, BUT the chemo Nicholas gets every month (vincristine...aka stinky vinky) wreaks havoc on the legs, and he will be receiving it for a long time.

All in all, everything seems to be on track. I have to set Nicholas up for neuropsyc testing soon. It has been over a year since Nicholas received his cranial radiation, and it is important to get a base line of congnitive function, so if problems do arise in the future there is something to reference. It is my understanding that the test takes HOURS...not really looking forward to that, but yet another thing that needs to be done!

The past couple of weeks have been very busy for us. Zachary started spring league hockey, and I started a part time job. (O.k. so I lied...I did find another solution for steroid week...I got a job! AND, I told my manager to feel free to schedule me as much as possible during those times. Shoot, I would stay and work off the clock during steroid season!)

Last weekend the boys and I came back to Bowling Green for BGSU's dance marathon to benefit the Children's Miracle Network, and more specifically, our hospital. It was a great time...Grandma came to the rec center for a little bit, and the boys had a ton of fun. We are now considered alumni since Nicholas was a Miracle Child last year, and we were able to go onstage for the closing ceremonies. They have each family say a few words, and like I always seem to do...I stood up there like a bumbling idiot. It's the point that counts, right? Next year, I swear I am going to have something prepared. Yeah, not so good at the impromptu thing.

I hope everyone had a nice Easter. The boys were up at some obnoxious hour...like 6am. They had a great time though, and enjoyed their baskets that the bunny hid for them. I am going to go to bed now, and get some much, much, much needed rest. Have a good week!

Oh, thanks to all of you who have donated to my Team in Training fund. You have helped me to raise over $3,000 to benefit the Leukemia and Lymphoma Society. I am absolutely amazed by the generosity of people...many of whom we have never met! Now, if I could just get all of you to run a portion of my race, I'll be set! Mark your calendar for April 30th...Nashville, HERE WE COME!

Take Care,
Kim

Sunday, March 6, 2005 11:25 PM CST

Sorry for not updating sooner. I will try to do a better job...I know, I know...I have said that a thousand times.

I'm happy to report that not much is going on! Nicholas's spinal tap went well last Thursday, and we weathered the steroid storm. Although we are a bit bruised and battered...we made it through. In case you have absolutely no idea what I am talking about........At the beginning of every month, Nicholas goes on a five day pulse of high dose steroids. Following is a list of common side effects: increased weight
puffy appearance
increase in appetite
increased risk of infections
depression
euphoria
fluid retention
sleeplessness, nightmares
hyperactivity
loss of potassium
irritability
hypertension
nausea
anorexia
acne
muscle wasting
bone pain

Nice, huh? The list should include irritability several dozen times, and should come with a disclaimer reading, "Keep child locked away in a padded room for the duration of steroid intake." Now, I am not being a bad (or even mean) mother. Let me give you a few examples of how the 5 day steroid pulse went...

Example #1: Nicholas became ENRAGED at Zachary and threw a baseball hat at....ME! If any of you have ever seen Nicholas throw, you know he has quite an arm. Needless to say, he didn't just toss the hat, he whipped it at me! AND, the hat hit me right in the face.

Example #2: After hitting me in the face with the hat, I kindly escorted Mr. Nicholas to his room all the while saying, "You ARE NOT allowed to throw things when you are mad. You hit me, and it hurt." We enter his room, and he goes after everything that is not nailed down. I had to duck before I was pummeled by flying objects! So, I put him in his bed, held his arms and legs and talked to him. The conversation went something like this:
Me: Nicholas, look at me.
Nicholas: (screaming wildly and thrashing about) NO! NO!
Me: Nicholas.
Nicholas: (trying out for the new Exorcist movie) NO! NO!
Me: Nicholas, I said look at me!
Nicholas: (calm and cute as can be) What?

UGH!
Example #3: For breakfast one morning, Nicholas had a bowl of bread and butter pickels, scrambled eggs, and fish sticks with ketchup.....and he was still hungry! And it continued...on and on and on and on...

But, I keep telling myself...only two more years, only two more years (sarcasm intended!)

I would like to take a moment to thank everyone who donated to my Team in Training fund to benefit the Leukemia Lymphoma Society. I just updated my fundraising site, so you can click on the link above to see how close I am to my overall goal. THANK YOU ALL SO MUCH! This cause means so much to me, and it is my hope that one day we can discuss leukemia in the past tense. No child or adult should EVER have to go through this!

Thank you also to the Bursar Office at Bowling Green State University! They are so kind to take on this cause, and will be donating money to be allowed to dress down. I'm excited to see how this works, and I thank you all from the bottom of my heart!
****UPDATE****I'm a dork****UPDATE***
The drawing for the raffle is not this Saturday, it is next Saturday! That would make the date March 19 (I think). I never know what day it is anymore!
****UPDATE****UPDATE****UPDATE****
I still have raffle tickets available, and the drawing will be held this Saturday. The tickets are 1 for $5 and 5 for $20. The grand prize is $1000, and all the proceeds from the tickets I sell go towards my ultimate goal. If you would like a ticket you can send me an email.

Have a great week!
Kim

Wednesday, February 23, 2005 11:21 PM CST

We have had a rough several weeks. Where to start...

Almost two weeks ago, Nicholas decided he would play doctor, and got into his pill case. He took all the 6-mp pills that were in there. 6-mp is part of his chemotherapy, and he takes one pill every night, and 1 1/2 pills on Sunday. Never in my life did I think he would do this...taking pills just happens to be part of his "normal" life now.

Needless to say, I made an urgent call to our oncologist, and he informed me that the main things 6-mp can affect are counts and liver enzymes. I drew his blood last Monday for a CBC, and a liver enzyme profile. The counts on his CBC were good, but his liver enzymes were elevated...328...normal is between 10 and 35! Our oncologist took Nicholas off all chemo for the next week, and I ended up drawing his blood for another CBC and liver enzyme profile last Thursday. Nicholas's CBC was still good, but his liver enzymes were still elevated. The count did fall from 328...almost in half, so we were able to start him back on his chemo.

I had quite a talk with him, and hopefully it worked. The pill case will no longer sit on the counter though! He gave us quite a scare!

Through all of that, I had to go to urgent care, and was diagnosed with acute sinusitis. LOVELY!

Then, this past Friday, Zachary woke up feeling horrible. By Monday, his cough had worsened, and he woke up with a funky rash on his chin. SO, I took him to the doctor. He was diagnosed with strep throat, and impetigo (sp?). GREAT!

THEN, Dave was also feeling lousy and ended up at urgent care. OK, I kind of pushed him there, but with Zachary having strep, we really needed to know for Nicholas's sake if Dave did too. Thankfully, Dave's strep test came back negative, but he was given antibiotics too.

I think we are all on the mend now (knock on wood:)! Tomorrow, Nicholas has his first spinal tap since starting maintenance...please say a prayer that the fluid is clear! Oh, did I mention that I couldn't get Nicholas's line to flush today? No blood return either. SO, we have to go to the hospital extra early so they can try some super duper clot busting stuff to get it working. Dr. J said they will have to do counts by a finger poke (Nicholas HATES finger pokes!), and if the line still doesn't work he will have to have an IV for the spinal tap. Please say another prayer that the line works tomorrow!

Ok...for some good news. I have raised over $2000 for toward my Team in Training goal to benefit the Leukemia-Lymphoma Society. Thank you to everyone who has so graciously donated to this cause! If anyone is interested in purchasing a raffle ticket for the cause, please email me for information. The tickets are 1 for $5 and 5 for $20. The grand prize is $1000. This is a great opportunity to raise money and win money.

Please visit our little buddy Meguire's website (www.caringbridge.org/oh/meguire) and leave a message in his guestbook. He had a bone marrow transplant at the beginning of this month in Columbus. He seems to be doing well, but him and his mom have been couped up in the hospital which is no fun!!!

Thank You for visiting!
Kim

Sunday, February 6, 2005 9:08 PM CST

No news is good news right? That is right! I will try to update a little more frequently, but to be honest we have just been enjoying our time in long term maintenance.

Two weeks ago, Zachary went to a birthday party at a place called "The Little Gym." He had a great time, and I picked up a brochure of their programs. Even though Nicholas's counts are good right now, we still have not been out of the house much since returning from GKTW. So, Dave and I decided to enroll Nicholas in one of the classes offered at "The Little Gym".

Nicholas has been to two classes now, and absolutely loves it! The first class was a little stressful...for me, not him. When we were driving into the parking lot, Nicholas told me to just drop him off at the door, and he wanted to walk in by himself! After having a lengthy discussion about why that couldn't happen, we walked in, and he promptly stated that he wanted to leave. After having another lengthy discussion, Nicholas finally decided he would participate in the class. I watched from the lobby area through the windows, and I was a nervous wreck for the first 1/2 hour of the class.

Nicholas decided for the first 1/2 of the class to stand there observing...with a finger in his mouth! For normal people this might not seem like a big deal. However, for cancer parents it is huge! The only thing going through my mind was how many germs he was putting in his mouth. We made it through though, and I tried to be less neurotic...but I did douse his hands with sanitizer the second he was done with class:)

Let's see...some other firsts for us since Nicholas's diagnosis...
1. I took Nicholas to the kids' club at the EMH Center. Never in my life, well the past year and three months actually, did I think I would be able to take Nicholas to a gym's child care area. The area is huge, and I take him in the early afternoon when there are barely any children there. The other day, I dropped him off and went upstairs to do some quick exercises, and when I came down to pick him back up he was playing with other kids! Again, might not seem like a big deal to most parents, but it meant so much to me. Nicholas has really been lacking in social interaction with other children, and it is so nice to not be in isolation anymore. One step at a time... Still no school for now though.

2. We all went open SKATING last night! Earlier in the day, Dave mentioned something about going...Nicholas heard...and that is all we heard about for the rest of the day! If anyone had any idea of all the particulars that goes into taking a child with cancer skating, well...you might say that we were out of our minds...especially for a cancer child who doesn't know how to skate!

I really wish we had taken a camera. Nicholas had elbow pads on over his Mighty Duck's jersey, Zachary's hockey shin pads on over his Ohio State pants, and his multi-color bike helmet on. Well, we obviously weren't going for style points! We wrapped his central line with some foamy gauze stuff, and we were ready to go. Hmmm...only one problem. What happens if he falls on his cute little bottom? There is nothing there to protect him! So, we took Zachary's spring league hockey jersey from last year...and stuffed it down Nicholas's pants. If only it had been toilet paper...it would have made for a perfect commercial!

Zachary zoomed around the ice, and I spent most of the time trying to keep Nicholas upright. We were on the ice for about three minutes, and he said he wanted to go. I took him off the ice, and he immediately wanted back on. It was a struggle trying to ensure he didn't fall, especially because he was all over the place! Dave and I held Nicholas's hands and skated several laps. We would try to go slow, and he would start running and would make his legs go every which way all the while saying, "WHOA, WHOA!" By the end of the open skate, Nicholas was able to go quite a distance on his own. It was so neat to see.

Zachary has been skating for so long, that I cannot remember what it was like to have a beginner skater. Next stop for Nicholas? Snowplow Sam (aka skating classes). He woke up this morning asking, "Can we go open skating?"
Ahhh, music to my ears! I am going to have to run the skating classes past our oncologist. She originally said no to skating, and she might not be too happy that we took him. However, his platelets are good, so we didn't have to worry about bleeding (well, not as much at least), we padded him up, held him up, and did everything we possibly could so he didn't get hurt. Stay tuned...

Have a good week! We are going to do some more "normal" stuff!
Kim

Saturday, January 22, 2005 7:49 PM CST

It's beginning to feel a lot like Christmas....everywhere you..........OH, wait...Christmas was almost a month ago! How about, "Baby, it's cold outside..." That is an understatement! The sky has not stopped dropping the white stuff, and it does not appear to be stopping any time soon! Sorry to all the poor souls who happen to get behind me while I’m driving. Unfortunately, I do not have four-wheel drive, and my vehicle tends to slip and slide all over the place! Yikes!

O.K…so here goes my final installment of the Amazing Vacation! Not too shabby…it only took two weeks!

Our final full day in sunny Florida (oh, how I am missing sunny Florida!) was spent at Universal Studios. If I thought the three boys were agitated at Epcot the day before, I was in for a rude awakening on this day! We went to Universal on Saturday, and it was probably the busiest of all the parks…after all, it was Saturday!

I honestly felt I had three boys! At one time or another all of them were complaining! Dave was disappointed because he couldn’t ride any of the rides he wanted to. It was rather comical. He kept asking Zachary if he wanted to go on rides, and Zachary kept turning him down. This was the park that Dave was really excited to go to, but he really didn’t get to experience any of it. I think by this time, the boys were really suffering from PTAPS (Post Traumatic Amusement Park Stress).

We were able to get a bunch of character pictures taken though. That is where the Dora picture is from. And, if you watch the Zeocast picture show, you can see how thrilled Zachary was to have his picture taken with Woody the Woodpecker. The workers at Universal were great, and they cut us in front of everyone for the character pictures. When one of the workers asked if the boys wanted autographs from the characters, we told her that we lost the pens that went with their autograph books. She went into one of the shops, and came out a couple of minutes later with an E.T. pen that the boys were able to keep. It was so nice!

Our troop made it half-way around the park, when the two littlest boys (aka Zachary and Nicholas) spotted carnival style games. Dave and I tried walking faster, but our tactic failed miserably. We ended up spending over $20 to win two rock-hard stuffed Scooby-Doos. But, the boys were happy, and that got us away from the carnival games! We always end up spending a small fortune on those games, so I guess we were lucky!

There were several other sights that we were able to see, like the Nickelodeon Studios and the Jimmy Neutron ride. We headed back toward the entrance of the park, and different characters were out, so we waited for the boys to get their pictures taken. The workers spotted Nicholas, and moved the boys right in. One of the workers had a bead necklace for each of the boys and made a cool design with it. She then fastened it around their necks. Zachary wanted his off immediately, as it aggravated his eczema. I felt bad, and couldn’t get it off, so one of the other workers had to get it off! Then, the boys went over to have their picture taken with Chuckie and Tommy (from Rugrats?), and to get their autograph. One of the characters took Nicholas’s book, the other took Zachary’s. The characters then switched books, so the other could sign. Simple enough, right? Oh, not by a long shot. The little switch-a-rooskie confused Nicholas and when he was given his book back he immediately reached for Zachary’s. The characters had it right, but right there in front of everyone (including the 15 people we so graciously cut in front of) Nicholas had a full-out meltdown. It was awful! I kept trying to explain to Nicholas that he had the right book, but we would have none of it. After apologizing to the long line of waiting parents and children, I scooped Nicholas up and put him in the stroller. He promptly threw his head back and then started wailing. It took me several minutes to realize that when he threw his head back the beaded necklace had cut into the back of his neck! One of the workers even tried to calm him down. The worker said he would take us to see Spongebob and Shrek, but Nicholas wasn’t listening. The worker finally said that he would be over there if and when we were ready to go see the characters. I’m surprised the guy stood there as long as he did, and I was ready to go over THERE with him! Nicholas finally calmed down and we were able to see Spongebob. I thanked and apologized to the worker a gazillion times…he was really nice, and I can only imagine what he was thinking of us!

After that fiasco, we decided that Nickelodeon wouldn’t be calling us anytime soon to star in our own show, and thought it best to say goodbye to Universal! We grabbed a bite to eat at the NBA café and headed back to Give Kids the World for our final night. Aunt Sue stopped by with Aunt Jo, and we were able to visit for a bit before it was time to go to Mayor Clayton’s birthday party.

Every Saturday night at Give Kids the World is Mayor Clayton’s birthday party. They have costumes for the kids to dress up in, music to dance to, and birthday cake to eat. The boys loved it! Dave and Zachary danced to the YMCA, and I kind of shimmied to the songs all the while holding Nicholas. Nicholas wanted to be in on the action, but couldn’t stand very long, so I held him for much of the party. Zachary tried doing the Macarena…it honestly was one of the funniest things I have seen. He normally is very concerned of other people and if they are watching him, but he got right in there…it was too cute!

After the birthday party, we went for one last late night run for ice cream. We then headed to the villa for our last night of sleep in sunny Florida:( The next morning, we had breakfast for our last time at the Gingerbread House, and headed back to the villa to load up and head out. If you look at the pics in the Zeocast, you can see Dave carrying Nicholas on his shoulders, and Zachary walking beside them. They are in their “going home to cold Ohio” clothes…never mind that it was over 75 degrees at the time!

The Orlando airport was insane, and Dave almost lost his laptop, but we made it on the plane. The boys were again allowed in the cockpit, and this time I went too. Nicholas and Zachary were pressing all sorts of buttons and pulling all sorts of levers, and all sorts of emergency sounds were going off. It freaked me out just a bit! The pilot was letting them do whatever, and I kept saying, “OK, that’s enough. LET’S GO!” The pilot had to of thought I was a bit neurotic! The flight was smooth, and when we deboarded in Cleveland the first thing I noticed was how cold it was! It was FREEZING!
The limo driver took us home, and Dave got out first to unlock the door to the house. Well, I won’t go into too much detail, but let’s just say…WE WERE LOCKED OUT! We unloaded all our bags, and the limo driver left. So, there we were…sitting on our luggage, in our driveway, in the snow, with no winter coats, awaiting the arrival of a locksmith. Thirty minutes and $60 later, we were in our nice warm cozy house. What an end to the most amazing vacation ever!

While at Give Kids the World, we were given a book... a biography of Henri Landwirth, the founder of Give Kids the World. I read the book in three days. This man is truly inspiring. He lost both of his parents in the Holocaust, and was mentally and physically abused in the Nazi concentration and labor camps during World War II. He suffered and lost so much because of pure hatred, but has accomplished so much because of pure love. The only thing I regret of our amazing time at Give Kids the World is that I was not able to meet this amazing, selfless man.

Kim

Monday, January 17, 2005 10:12 PM CST

Amazing Vacation...Take 2...

Hmmm...where did I leave off?

Friday...was a very nice day. The morning started with pictures with Barney, Baby Bop, BJ, and Jimmy Neutron. The boys loved it, but I thought Nicholas would be a bit more excited. After all, even I know every Barney song ever made, and it is not because I LOVE the show! I think Nicholas was just quietly observing.

We had breakfast at the Gingerbread House, and then headed to Epcot. I think the boys, and Dave for that matter, were experiencing information overload, because none seemed to be in the best of moods. However, moods seemed to improve somewhat when we found the Test Track ride. I had read in our GKTW Bunny Book that there were certain lounges in Epcot available to guests staying at GKTW. One of those lounges is hosted by GM, and is usually reserved for GM employees. Nicholas and I headed to the lounge while Dave and Zachary went to ride Test Track. Test Track is a ride where you get to be the test dummy as the car you are riding in is subjected to extreme heat and cold, hair pin turns, bumpy terrain, and last but not least a spin (not an actual spin, more like a ride) on a banked track at 60mph. I told Dave to meet me and Nicholas back at the lounge. Sorry, the ride just isn't for me.

The gentleman in the lounge was very nice, and even gave Nicholas a little car that was just a miniature of the real car in the ride. In the lounge, we were able to see the inside of the Test Track ride, and if we went to the other side and looked out the window, we could see the outside banked track part of the ride. It was very neat, but Nicholas wasn't too impressed. He was in a rather foul mood until another family came up to the lounge. The little girls decided they were going to go on the ride, and from that Nicholas decided he wanted to ride. Dave and Zachary finally made it up to the lounge, Zachary was given a car just like Nicholas's, and then we were given a pass to go on the ride. We were given directions to the ride, and were spit out at the very beginning of the line. This method was even faster than the guest assistance pass!

Nicholas was just tall enough to meet the height requirement, which made me a little nervous about the ride. We got in the car, and neither of my lovely children wanted to sit with me! Can you believe that? SO, I HAD TO SIT IN THE FRONT! I wasn’t too happy about that, but what made it funny was that another couple rode with me in the front of the car, and the guy was scared! It made me feel so much better! OK, so I must admit…the ride wasn’t that bad and the boys loved it.

After that ride, we headed back to the Magic Kingdom to complete our day. We picked up a wheelchair when we exited the Monorail, and just kept that instead of renting a stroller. One thing we did discover during our time at Disney is that you can’t really take strollers up to a ride, but you can easily take wheelchairs. By the second day of our trip, Nicholas’s legs were really bothering him, and if he wasn’t in a stroller or wheelchair we would be carrying him. The kids had wanted to ride the train at the Magic Kingdom, so we decided to catch it at the beginning of the park. The worker rolled Nicholas right on and locked the brakes, and Zachary, Dave, and I sat with him in the handicapped car. Good for Nicholas…bad for the rest of us. Nicholas got to face forward, and Dave, Zachary, and I got to ride backwards. It was kind of awkward just for the fact that we were facing all the other passengers, and had nothing else to look at! But, at least the kids got to ride the train!

For the rest of the time at the Magic Kingdom, we just took our time and enjoyed the sights. It was nice going back for a second day, because we had already completed everything the first day. Nicholas got his picture taken with Aladdin, Jasmine, and the Genie, and with characters from Peter Pan (or Pirates of the Caribbean…I can’t remember!). Zachary didn’t want anything to do with those characters though! The one thing Zachary wanted to do was ride the Buzz Lightyear ride again. It was nearing closing time, so we really had to race to the other side of the park to make it in time, but we did. The workers were very nice and let us ride twice. For the record…the only reason Dave beat my score on the ride was because Nicholas was the pilot of my car, and decided to turn us every time I was zeroing in on a target. Whoo…I feel better now:)

I think I better close for now. It is late again. I know you are all waiting with great anticipation to find out what we did on our final, full day, but you will just have to wait for part 3! On the upside…we are all doing well! Nicholas is feeling great, as is Zachary. I couldn’t ask for more! Well, actually…
Have a good week!
Kim

Wednesday, January 12, 2005 10:14 PM CST

For one week we lived like royalty. I really can not say enough about what an awesome time we had on Nicholas's Make-a-Wish trip. Any doubt I had in my mind about making the right decision for the trip evaporated the moment we met our Give Kids the World greeters at the airport.

A very nice elderly couple met us at the Orlando airport, helped us find our luggage, and then took us to our rental car. On our walk to the rental car, the gentleman reached out his hand to Nicholas, and they both proceeded to walk hand in hand. I told the gentleman that I was surprised that Nicholas took his hand, as he is normally a very shy little boy around people he does not know.

The next day, at the Give Kids the World village, we saw the same man again. He told me how much my little comment had made to him, and that it really touched him that Nicholas took his hand! The kindness we were shown from Give Kids the World, and all the countless volunteers is immeasurable, and will truly stay in our hearts forever.

Soon after we arrived at the village, we met up with Meguire and his family. We all went to the party at the pool Monday night. Zachary and Dave swam for a bit, and then Mayor Clayton came out and got the party started! Zachary wasn’t really into it, but Nicholas loved it! He is so fascinated with dressed up characters, and was so excited when the Mayor and his wife (or sister, maybe?), Merry, held his hand and danced with him around the pool. My aunt Sue, Cousin Mark, and his family dropped by to see us at that time, too. So, that night was good all around!

The next day, we went to the Magic Kingdom with Meguire and his family. The kids had a blast, and it was very neat to hop to the front of the line for all the rides! Never in my life did I think we could get through the entire Magic Kingdom in a day! But we did! And, we were able to get pictures with almost all of the characters! We went to Mickey’s Toon Town, and in the big tent they had lines for all the character pictures. I asked the worker standing at the beginning of the line if there was any way we could get through faster. He took us, and Meguire’s family through the back, cleared the rooms, and let us in! We did wait for a little while at the back door of one of the character pictures, and when the worker came out he said something about the princesses being the busiest! It was rather amusing…all of our kids are boys! We politely told him that we would rather not see the princesses! That night, we got to see Jiminy Cricket’s firework show by Cinderella’s castle. It was absolutely beautiful, and I made sure to wish upon a star!

Wednesday, we went to Animal Kingdom and MGM. Nicholas was absolutely amazed at all the animals on the African Safari at AK. He kept exclaiming, “There’s another one!” It was pretty cute! We made sure to make it back to the village by 5:45 pm…for our parents’ night out! Dave and I went out to eat at Olivia’s in Disney’s Old Key West resort. It was a very nice evening, and the entire meal…appetizer, entrees, and desserts…were comped! After dinner, we headed to the village to pick the boys up from the castle so we could get them back to the villa in time for Mayor Clayton to tuck them in for the night. Oh, the first thing Nicholas said when we picked him up…, “I saw cheerleaders!”
Nicholas had been referring to Mayor Clayton as Merry Clayton, and kept asking when Merry Clayton was going to be there to tuck him in. We thought it was so cute, and tried correcting him, but he just kept on with Merry Clayton. We were surprised when Merry Clayton actually showed up to the villa to do the tucking in! Nicholas was disappointed that it wasn’t the “real” Merry (Mayor) Clayton, so Merry had to tuck me and Zachary in instead!

Thursday started off with pictures with Mickey and Minnie at the village! It was very neat! After that, we had breakfast at the Gingerbread House, and then headed off to Universal Studios Islands of Adventure with Meguire and his family. Before we even entered the park we were able to see some action, as they were taping an episode of Fear Factor!

I must admit, Islands of Adventure treated us the best of any of the parks. The picture they took of us at the entrance of the park was complimentary, as was a picture of the boys with Spider-Man! We ended up splitting with Meguire and his family, and thanks to the handy dandy walkie-talkies…we were able to meet back up for the cool stuff! Dave and Josh (Meguire’s daddy) went on a ginormous roller coaster (Dueling Dragons…or something like that), and Dave spent the next hour or so not feeling that great (I keep telling him he is getting old, he just never listens!). Right after the ginormous roller coaster, we went on a smaller (but still big for me:) roller coaster called the Unicorn. Nicholas was a little scared, but right when it ended, he said he wanted to go on it again! Zachary loved it, though. Zachary and Dave went on water rides, and ended up getting soaked! It was very funny!

Christie, Meguire’s mom, walkie-talkied us and told us to hurry up to where they were standing. One of the workers saw Meguire’s GKTW button, and asked them if they wanted to go to the back lot to have their pictures taken with the Super Heroes. The only one I knew was Spider-Man, but Dave knew them all, and the pictures are great! After that, the worker took all of us to a stand and got all the kids slushies! It was so great!

I think I better end here, it is getting late…part 2 to be continued….

p.s. I’m trying to get the pictures up, but I am so computer illiterate it might take a while!

Kim

Thursday, December 23, 2004 10:20 PM CST

Nicholas is doing well. Zachary is doing well. I am doing well. Dave...hmmm...not doing so well!! So much for a nice relaxing holiday!

The past week our family has been dealing with what I call VD...and no, that is not short for venerial disease. I'll give you a hint...the first word is vomiting. It started with Zachary, and like clockwork struck each member of the family. Dave is the last to get it, and I am hoping he will be over it in time for Christmas day!

Zachary came down with the VD (***remember: not venerial disease***) Sunday night. I actually had to call the clinic to ask what I should do. It was kind of amusing actually...calling our oncology clinic about our healthy child. Zachary really has not been sick since Nicholas was diagnosed, and the whole thing seemed so foreign. It is just bizarre that...oh, say 1 1/2 years ago something like this would be normal for our family, but now this is abnormal, and dealing with cancer is normal. Whoooo...sorry if I lost any of you there...

In the wee hours of Wednesday morning, both Nicholas and I got bit by the VD. Nicholas had us worried for a bit, but he has rebounded very well. Thankfully, we did not have to make a trip to the hospital. I suppose if the bug was going to bite, now was the time to do it...Florida is 11 days away!

Can that be right? OMG! I'm going to be flying on an airplane in 11 days?! With my children? You've got to be kidding me!! 11 days? I have tried talking my way into us driving, but no such luck. Honestly, I am a basketcase when I fly. You know the scene in "Airplane" when all the passengers line up to hit a lady that is freaking out...yup...that's me! It is totally irrational, and I don't know where the fear is from...and I have absolutely no idea how I am going to be able to put a brave face on for the kids. Did I metion Dave HATES flying with me? I think I will have to leave Dave with the kids in coach and I'll just have to get bumped to first class. Yeah, that will definately set my mind at ease!

Anyhoo...have a wonderful holiday!
Kim

Monday, December 13, 2004 0:08 AM CST

We had a very fun and eventful weekend! I can not even begin to express how nice it is to have Nicholas on maintenance. Hmmm...this is what our weekend looked like:
Friday night: Zachary had hockey from 5:40-6:30. So, Zachary got off the bus from school at 4:00, and I proceeded to run around like a chicken with my head cut off until it was time to leave for practice. We got to the ice arena with little time to spare, and I had to try with all my might to speed up a six year old who really only has one speed...su..per...s..l..ow...mo....tion (yes dad, I know...paybacks are a $#@%$^!) Needless to say, he got on the ice several minutes after everyone else.

After practice, I again tried to put everything in fast forward, because I had a party to go to at 7:30. I dropped the kids off at Dave's office and started to speed home to get ready for the party! On the way home, I spotted a car in a ditch, and was shocked that not one car had stopped to inspect it. So, I threw the car in park, and got to the car as the occupants were exiting the vehicle. No one was hurt but the car, and I called AAA for them. When the police arrived, I wished them the best and headed toward home again...it was 7:35. I got to my party...late, but I got there. It was a very nice ornament party for the ladies of the Vineyards, and it was great to finally meet many of my neighbors!

Saturday:
Zachary had hockey practice from 6:50am-7:40am (or something like that...I wouldn't know...the early mornings are Dave's gig). Dave then came home, dropped off Zachary and took Nicholas with him to Grafton. I took Zachary to Wal-Mart to pick out a birthday present for a classmate, and ran him to the birthday party at 1:30. Then, I went to the gym until 3:00, when it was time to pick Zachary back up.

We then ran home so I could pick up some chips and dip to take to a holiday party we were supposed to be at by 3:00. At 4:00, we arrived at our party, and by 5:30 we were back on the road to go to another party. Do you have a headache yet? I do, and it is not because of what I had to drink last night!

The one thing I have realized is that our social lives have been mostly non-existant since Nicholas was diagnosed. It was so nice to actually be able to socialize with people...outside of the cancer world. I wish we could have stayed longer at the first holiday party. Nicholas and Zachary had a blast! Nicholas tried to act shy when we first walked in the house, but it was a matter of seconds before he was smiling and running for the stairs. The smiles are priceless, and it is so sweet to see him interact with other children...something he really has not been able to do in over a year.

The kids spent the night at Dave's parents' house Saturday night so we could go to our adult party. It was a very nice time...thank you Scott and Nick! Poor Dave had to get up first thing this morning to pick up Zachary and Nicholas, because Zachary had hockey practice (hee, hee...no way I was getting out of bed!)

I let him get rest though. Our oncology clinic had their Christmas party this afternoon, and I took both the boys. It was very nice to be able to attend this year. We didn't go to last year's party, as it was right after Nicholas was diagnosed, and his counts were extremely low.

The party was at COSI (Science Center) in Toledo, and the boys had a great time. It was nice to see our nurses, and all of our friends we have made from the clinic. Although I let Dave off the hook, Grandma got roped in! Thanks for helping...I really would lose my mind without you:) On the way home Zachary said, "Daddy missed out on all the fun!" It was so great to see both the boys having fun...together and separately.

We will be taking Nicholas's Make-A-Wish trip to Disney and Give Kids the World on January 3rd! One of the great things about this is our little buddy Meguire will be taking his at the same time...to the same place! We are very excited! I did try to get our flight changed though, so we could see my cousin while he is visiting his parents. He will be going to Iraq in February, and I really wanted to see him before he left, BUT...Make-A-Wish won't help get the tickets changed, and it would cost us over $400. So, it does not look as though that will be happening which is a little depressing. I will post more about oour trip as the time nears!

Thanks to Shelly, Sue and Nobie, and the Alexis Flynn Foundation for your generous contributions! Oh, and First Security Financial Services...can't forget their generous contribution to my Team in Training goal!

Have a great week!
Kim

Wednesday, December 1, 2004 10:51 PM CST

It is official! Nicholas began maintenance today! Does this mean the battle is over? Does this mean he won't have to have anymore chemo? No, and no. This does mean that: 1) Nicholas is finished with the really intense chemo. 2) Most of his chemo will be given at home. 3) We are finished with weekly visits to the clinic for chemo and are now on a monthly schedule!!!

Nicholas had a spinal tap today, received vincristine, and then we were set free! I think it was one of our fastest visits for a spinal tap. Kind of odd that I get excited over a quick visit for a spinal tap.

Did I mention that he started steroids today? UGH! Nicholas will be on steroids the first five days of every month. The steroids have already kicked in...and it's the first day!!!

Nicholas had a major meltdown tonight when he realized we didn't have his blanket. It was at the hospital, but I don't think it left with us. He was so upset! I called the hospital...I called Grandma, but no luck. Then, Nicholas figured it out and the conversation went something like this:
Nicholas: I know who took my blanket!
Me: Who?
Nicholas: It was pwobly the clown. He took my blankie and put it in his truck!
Nicholas: The clown stole my blankie!
Me: The clown did not steal your blankie.
Nicholas: Yes he did!
Me: No he didn't!
Nicholas: Yes he did!

This was probably one of the funniest conversations I have had with Nicholas. While we were at the hospital, I went out to the parking garage to put some supplies in my car and happened to see the clown in his car getting ready to come in. I told Nicholas this when I got back to his room. Nicholas is fascinated with clowns...as long as they keep their distance. So, when we were leaving the hospital, Nicholas wanted to go into the playroom to see if the clown was in there. He was, but Nicholas would only say "Hi," and wouldn't get closer than 20 feet to him. It just cracked me up when, later on, Nicholas accused the clown of theft!

Kim

Friday, November 26, 2004 12:19 AM CST

I hope everyone had a nice Thanksgiving. Nicholas was released from the hospital on Tuesday, and we are just thankful that we didn't have to spend the holiday there. He seems to be in better spirits, but still has the nasty cough. If he still has it on Monday, we will have to go back for another chest xray. I've become very concerned with the amount of xrays he has had to his little body, so please say a little prayer that the cough works it's way out.

Other than that...not very much going on around here. We stayed home for Thanksgiving dinner because of Nicholas's counts, and I told both of our families to cross their fingers for Christmas. Hopefully by then he will be in maintenance, his counts will be good, and we will actually be able to see all of our family!!

Have a nice weekend!
Kim

Saturday, November 20, 2004 9:48 AM CST

~~Monday, November 22, 2004 UPDATE~~~
I just tried to update the page, but I am having problems, so I hope this one works. Nicholas was admitted to the hospital last night after many, many hours in the ER. His ANC dropped to 150, and with his fever there is a real concern of infection. Nicholas's cough seems to be getting worse, but the chest xray was clear...so that's good. Right now it is just a waiting game until the blood cultures come back. Please say a little prayer for Nicholas's cultures to come back negative. I'll update more when I find out more.
Kim

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Saturday, November 20, 2004
I know it has been a little while since I last updated, but the 1 year anniversary of Nicholas being diagnosed put me into a funk. In the early morning hours of November 10th, I started updating the journal, but I couldn't finish it because it is just too depressing. What I wrote has been left on my computer, and I have been unsure of what to do with it. SO...below is my half-journal that has been sitting on my desktop.
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Here it is 1:25 am, and I can't sleep. I am remembering this night one year ago, and I am filled with sadness.

It was at this time last year that I was searching through many webpages, trying to absorb as much I could about leukemia. The thought would have never entered my mind had Dave's mom not said something. Could it be? But Nicholas just had his 3 year well check two weeks ago! He was borderline anemic, but the piece of paper showing iron-enriched foods was supposed to cure everything! Leave it to an old medical book. Under the category of bruising, you will find LEUKEMIA and all the symptoms. Symptoms Nicholas had.

I gave the kids a bath, it was a Sunday night, and I was to start teaching my lesson plans the very next day. Zachary was in the tub...I put Nicholas in, and he started crying. I called my mom and told her to come over and look at Nicholas's legs. I told her what Dave's mom had said, and showed her the tiny pinpoint bruises all over his legs. After she left, I put the kids to bed, and felt my world caving in. I set my lesson plans aside, and did research of a different subject. Sometime in the middle of the night, and in the middle of my research, Nicholas woke up. I put him in my bed, and I lay down with him. I was heartbroken, and he slept like a baby.

The next morning, Monday morning, Nicholas woke up and there was blood on his pillow. His mouth started bleeding overnight. Later that day we would discover the pinpoint bruises on his legs, or purple freckles under the skin are called petechiae. The bleeding of the mouth and petechiae are common with low platelet counts. Normal platelet counts range from 150,000-450,000. We would soon learn Nicholas’s platelet count was 4.

First thing Monday morning...I took my lesson plans to my school. I had arrived so early the secretary had yet to arrive. Alone in the office, I sat, and I waited, and I cried. When she arrived, I handed her my lesson plans, and told her that I knew I was not coming back.

On my way back to Bowling Green I called Dave to tell him that his mom was right. I remember telling him that even if it was some rare blood disorder that I could handle that. BUT, I COULD NOT HANDLE CANCER.

I picked up Nicholas and headed to Perrysburg (or,Perrysburger...as my kids call it) to the pediatricians office. While we waited in the waiting room, Nicholas just laid down. Other little kids had come in, and he looked like he wanted to get up and play with them, but he just put his head back down in my lap. The nurse led us into a room, and she asked what was wrong. I told her. Dr. C. came in, did a brief exam, and said we were to go straight to St. Vincent's. She led us to the nurse’s station so I could call Dave. It was so difficult...the nurses hugged me, and we were soon on our way.

When we got to the hospital, I had to carry Nicholas the entire way. We arrived on the sixth floor, Mercy Children's Hospital, and promptly waited. I held Nicholas in my arms and we seemed to have to wait an eternity to register with a lady whom I would later come to know on a first name basis. We were finally put in a room, and everything seemed to be a whirlwind. They attempted to start an IV on Nicholas, and after many failed attempts and Nicholas crying ‘OWIE, OWIE’…I stopped them. It was heartbreaking.
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This November 10th, Nicholas was scheduled to receive chemo. When his counts came back his hemoglobin was around 7, and they promptly sent us to the hospital for a blood transfusion. The hospital was the last place I wanted to be that day, and flashbacks of one year before kept creeping into my mind.

Nicholas's visit to the clinic was much better this week. His counts are on the rise, and this week was his last official dose of chemo in DI#2...woohoo!!!!! Next stop...maintenance! If his counts are good enough, Nicholas will start maintenance the day before Thanksgiving (complete with spinal tap). I'm not going to hold my breath though. Nicholas has been runninig a fever, and has a nasty cough, so we just may end up in the hospital before Wednesday.

I still can't believe a year has passed. I've had a quote stuck in my mind for ages..."The pain of childbirth fades. The pain of having a child diagnosed with cancer never fades." It is a pain that is so incredibly real, and it is a pain that will forever be in my heart.

Nicholas has come a long way in a year... Our family has come a long way in a year... but the journey is really just beginning. Nicholas is looking at another 2 years of chemo, and somewhere in there we have to slide normalcy. It is not very easy to do, but we will try:)

I wanted to say a special thank you to a special fraternity at the University of Toledo. They have kicked off a fundraiser for our family called, "Nickels for Nicholas." I honestly can not say thank you enough to this group of guys and to the whole University of Toledo community. It amazes me that they would take us under their wing when 1) we have no affiliation to UT 2) we have never met most of them AND 3) I was born and raised a Falcon;) I will tell you one thing...I am going to have a really rough time during the upcoming UT/BG game:) Go Rockets!

Kim

Tuesday, November 2, 2004 1:02 PM CST

Happy Birthday, BopBop (aka Grandma Flynn)!...Oct. 31st
Happy Birthday, Birthday(aka Grandpa Flynn)!...Oct. 29th
Happy Retirement, Grandma(aka Old Granny Knauss:)...Oct29th

We have had a lot of celebrations recently...can you tell? Nicholas is doing well, and he was able to start the second half of delayed intensification last week. He had a spinal tap and other chemo (intrathecal methotrexate, cytoxan, ARA-C...I think that is all) during our overnight stay in the hospital. The nursing staff did an excellent job of releasing us in time so we could make it to my mother's retirement party. Thank you to the entire staff of Continuing and Extended Education for your generous and thoughtful gift. It was very, very much appreciated.

BopBop and I took the kids trick-or-treating on Sunday, and Dave stayed at the house to pass out treats. The day was a little bittersweet for me, as I remembered what trick-or-treating was like last year. Last year, Dave and I took the kids around my parents' neighborhood, and we didn't get too far when Nicholas started complaining that his legs hurt. Nicholas didn't want to get out of the wagon, but Dave and I coaxed him..."Just one more house..." By the time we had finished, the weather turned cold and it started to drizzle. “Just one more house…” Little did we know that 10 days later our world would crash in. On November 10, 2003, Dr. J tried to perform a bone marrow aspirate, but could not get a sample because Nicholas’s bone marrow was so packed with cancer cells.

It is so hard even now to think back to last year and how much our lives have changed since. This time last year, I was frantically working on my lesson plans in preparation to teach my two-week units in Social Studies and Language Arts. I was so consumed with the mundane hoops we as students of education were meant to jump through, that I was unable to see what was brewing before my eyes. I spent many, many nights after the kids were in bed, working…it was really the only time I could get anything done. And I spent many, many of those nights losing my patience with Nicholas. Time after time, Nicholas would come downstairs, after being in bed, and I would tell him, “You walked down the stairs, you can walk back up them.” He would say, “Carry me.” We would have a battle of wills, and eventually I would relent and carry him back to bed. After Nicholas was diagnosed, our case manager said to me, “Oh, he was playing through his pain.”

This Halloween was so much different from last year. We took the wagon again, but this time, Nicholas sat on the edge ready to jump off at a moments notice. My thoughts of last year’s Halloween slowly dissolved into the back of my mind, as I watched the sheer joy on Nicholas and Zachary’s face. There was one small incident with Nicholas refusing to go to a house…but this time it had nothing to do with him feeling crummy from leukemia! The lady of the house was dressed as a witch, and when Nicholas saw her, he would not budge from the wagon. Zachary ran up and got the candy, and even got one for Nicholas. When Zachary came back to the wagon he said, “That wasn’t a real witch Nick.” Nicholas responded, “Oh, I thought it was.” It was so cute!

Nicholas woke up Monday morning saying that he wanted to go trick-or-treating again, because “that was so much fun.” I can live with many more Halloween’s like this one. We are so truly blessed that, although the road is long and has been bumpy, he is still in remission. With every passing day, we are one step closer…

This is my main motivation for joining Team in Training. Nicholas has already made it farther in treatment than some children (and adults) have the opportunity to. I am so very thankful, and I am committed to doing my part. ALL is the most common cancer occurring in children. Do you know what the average age of children who are diagnosed with cancer (all cancers, not just leukemia) is? Six, the average age is 6 years old.

Treatment has come a long way, but imagine yourself standing in the hallway of the Pediatric ICU with your son’s new doctor, an oncologist, and being handed two pieces of paper. Each paper is a graph showing your child’s chances of survival within the next five years. Those pieces of paper you will later discover are irrelevant when the doctor tells you that your child is not responding and is not in remission. You will then be handed two new pieces of paper…I am looking at ours at this very moment. One is the 4 year EFS (or, event free survival, as in…no relapse) outcome for Nicholas’s protocol…73.2%...73.2%...73.2%. The other is the 4 year survival outcome…85%. I’m sorry, but those statistics are sobering, and actually associating those statistics with your own child is heartbreaking. Who are the 21.8%, or the 15%? Leukemia does not discriminate.

Please visit my fundraising links above to help the cause. No amount is too little, and donations are tax-deductible. Thank you to Dennese Black, and Billy Darwish for their generous contributions toward the ultimate goal. Thank you also to BopBop and Grandma for your contributions.

Kim

Friday, October 22, 2004 9:22 PM CDT

Last week was filled with highs and lows, and this week has been much the same. We started out last week with the hope of not having to visit the clinic (our scheduled appt was supposed to be the 13th). However, we ended up at the clinic on Monday...two days before we were even supposed to be there! Nicholas's counts were good, so we should have been given a free pass for the week, but his line clotted, and after trying FOREVER to get a blood return, I knew we would have to make the trip.

Nicholas was very good at the clinic, and with alot of work, our nurse was able to get his line working again. Dr. J couldn't believe how much hair Nicholas had, and after saying so she promptly said, "He'll lose it again." I didn't believe her, but I think she jinxed his hair!!!

I paid a barber $15 to shave Nicholas's head yesterday. Late last week, after the steroids ended, Nicholas's hair started falling out. This time, his hair was falling out in patches...not like the first time when his hair had fallen out from the radiation and he was totally bald. It did kind of irk me that the barber charged full price to shave a child's head that just happens to need it because of the chemotherapy that is saving his life from cancer is making it fall out...but I'll try to keep my frustration to myself. I mean really, do you need $15 that bad? It just reminds me of the pediatrician, who missed the diagnosis, coming to the hospital. He wasn't asked, we didn't want him there, and then we received a bill for over $80 from that visit.

Nicholas did not feel well at all last week, but this week he is doing much better. His face and belly are still round from the steroids, but I think they may be going down a little. I drew Nicholas's blood on Tuesday and ran it to the local hospital to see if he would make counts for treatment on Wed. He was scheduled to start the second half of this phase which meant a spinal tap, intrathecal methotrexate, and cytoxan (a drug that can damage the kidneys and requires an overnight hospital stay for hydration). However, his ANC was just a little over 600...and it has to be over 750, so we are on hold for a week. I'll recheck his counts on this coming Tuesday, and hopefully he will be back on track.

I think that's about it for Nicholas. I took Zachary to the doctor yesterday. His eczema is the worst it has ever been, and is now all over his neck and face. The doctor ordered him to take...STEROIDS! What is this??? One child finishes steroids, and the other picks them up. Dave was on steroids for his arthritis a while back...can you imagine if I had all three of them going at the same time? I think I would have to take a vacation far, far away. It was kind of amusing though...the doctor started explaining how the steroids can cause behavior changes. I told him I was very aware, as Nicholas just finished 7 days of dexamethasone. Hopefully this works for Zachary. Normally his eczema is aggravated only in the winter, but this year it hasn't gone away, and it's not even winter yet!!!

I better wrap it up. Zachary has hockey practice at 6:50. Oh, did I mention that that is 6:50am? YUCK!

Please visit the sites above for my Team in Training fundraisers. All donations are appreciated! Have a good weekend!

Friday, October 8, 2004 1:03 AM CDT

Happy Birthday Pappy!!! (sorry, a little late...Oct. 4, but you know me...never on time:)

Nicholas is an October Child of the Month for Make A Child Smile!!!
Please click here to see Nicholas and to find out how to make a child smile!

O.K... NOW I AM MAD!!! I just had an entire journal and lost it!!! UGH! Don’t the evil computer demons know they are messing with my impressive writing ability???

Anyhoo… Nicholas had his clinic appointment yesterday. Everything went well, except for the fact that he turned into the devil five minutes after arriving (thanks, steroids!). I think that it took that long for the morning dose of steroids to kick in, and boy…it was not a pretty sight! He wouldn’t even cooperate enough to stand on the scale, so Marcy (our nurse) had to pick him up and weigh him on the baby scale.

I, being the highly intelligent person I am, allowed Nicholas to be a hockey player at the clinic. Each visit, Nicholas is a different sport star. Most of the time it is football (I banned baseball a long time ago…after he insisted on carrying a real wood bat…wise idea on my part don’t ya think?), but this time it was hockey. So, he wore his hockey gloves (which he would not remove while Dr. C was examining him) and carried his miniature wood hockey stick (yeah, I know…I won’t allow the bat, but I’ll allow the wood hockey stick? Trust me, it is less lethal. However, I don’t think Dr. C believes so…especially after almost getting clobbered by the stick!). Lesson learned…don’t give kids on steroids anything that can be used against you or other people. O.K., so maybe there are times when the intelligent part is thrown out the window. However, he was in a great mood in the car, so I figured all would be well.

Nicholas’s blood counts looked very good yesterday! Next week Nicholas is only supposed to go in for counts and a physical exam. I made a deal with Dr. J that I can check counts locally, and if they are good, then we won’t have to make our trip to the clinic. Yesterday I thought we were home free. Nicholas was looking well, but today that has changed. He has dark circles under his eyes, he is pale, he is extremely irritable (thanks again steroids!), and he has been sleeping a lot. Needless to say,…I don’t think we will get off so easily.

Check out the above link for Make A Child Smile, and if you have a chance drop Nicholas a line. This organization is just wonderful, and I can’t believe I waited so long to have Nicholas featured. He has been so excited to go to the post office to check his mailbox…it is very cute! It is also very neat to see letters coming in from all over the U.S…from California to New York, and many places in between…including our town of Avon! Pretty impressive considering we don’t know anyone!!!

Hope everyone has a beautiful weekend! Ours will be filled with Zachary’s football game on Saturday and hockey practice on Sunday. Will it ever end???

Wednesday, September 29, 2004 10:29 PM CDT

Nicholas is an October Child of the Month for Make A Child Smile!!!
Please click here to see Nicholas and to find out how to make a child smile!

Despite steroids, Nicholas has been doing very well! This week he is off them, and next week he will be back on. His counts are good right now (the steroids help with that), and this past weekend Nicholas was able to have more fun than he has had in a long time.

We had to head out to Toledo for a clinic visit last Friday (yucky leg pokes!), and Nicholas was determined that he was going to go to his babysitter's house when we were done there. In fact, Thursday, when we woke up...the first thing out of his mouth was, "I want to go to my babysitter's." So, after the clinic, we headed to Bowling Green to see "the babysitter." For some reason "babysitter" comes out of his mouth easier than "Laurel" does; although for awhile he had taken to just calling her "mom." I guess that would be the easiest of them all!

I can not even explain how much it meant to see him playing with Madison and Abby again. We had only stopped to visit one time before (since he has been diagnosed), and at that visit he really didn't talk to anyone, and wouldn't even play. For the past 10 months Nicholas has not had any socialization with other children, except for Zachary of course, and it shows...especially since Zachary has started school. I've learned that I just am not as fun as another little kid, and he has taken to screaming at Zachary (when Zachary gets home from school not wanting to play), "BUT I MISSED YOU SO MUCH!" It is the cutest thing, but also the saddest, as I know he really, really wants to play with other children.

Anyhoo...Nicholas was able to step outside of leukemia for a night, and go with Laurel and the kids to the mall for some pizza and fun at Professor Tinker's! This was one of their common activities before leukemia. Almost everytime we pass the mall, Nicholas exclaims, "My babysitter took me there!" It has been a sad reminder of how much his life has changed since being diagnosed, but on Friday he was able to step back into our "old" lives and really, really enjoy himself like a little kid should. Laurel, I can not thank you enough!

Today, Nicholas had a clinic visit. Like I said before, he is doing very well...except for the cough he has had for several weeks now. His chest is clear, but the cough is persisting. So, after chemo (doxo and stinky vinky) we headed over to the hospital for a CT scan of his sinus cavity. He did very well for the scan, and hopefully we will find out the results tomorrow.

I'll close now, but I will leave you with a few of what I will call "Nickyisms."

1) After making steak for dinner Monday, I asked Nicholas if he would like some...to which he responded, "YUCK! I don't like snake!"

2) Several minutes after trying in vain to explain that steak was not snake we had an encounter with a fruit fly. Nicholas said, "Mom, HURRY! Get the icewater!" (Get it...icewater...flyswatter, ok maybe you did get it, but if you heard how he said it you would think it was the cutest thing in the world!)

3) Nicholas's all time favorite question of the week: said in the most innocent, cutest voice, "Mom, do people shoot cannonballs?" What??? We have no idea where that is coming from, but out of the blue he'll say, "Mom, can I ask you a question?" To which I reply, "Of course you can." And that is the question we get everytime! Makes you wonder what they think about!
Have a good week!
Kim

Tuesday, September 21, 2004 10:16 PM CDT

We decided that we did not see enough of the hospital last week, so just for the heck of it we hopped in the car and went again! JUST KIDDING!

Nicholas officially started DI#2 today. He had a spinal tap at 11am, and considering he didn't go to sleep until 2 am the night before...well let's just say it was a rough morning (for me, not him). The real kicker is that we have to head back on Friday for the painful leg shots(Peg).

The spinal tap went ok. These are all the different meds he had just for today: vincristine, doxorubicin, IT methotrexate (done during the spinal), zofran, keppra, and dexamethasone. Oh, yeah...did I mention he is back on steroids this week? That is the dexamethasone, and I had the pleasure of discovering tonight that it is not an approved drug with our insurance company! I think I am going to have to make a call tomorrow.

All in all everything is going well. This is a rough phase...actually a repeat of the phase we were in several months ago. The first time around Nicholas did better than was expected, so I am hoping for much the same. Next stop.....LONG TERM MAINTENANCE!

I can't believe I left out that Nicholas got to play football on the BGSU practice field! Grandma and Pappy took him (while Mommy got a much needed nap...especially after a little boy kept her up all night:) to the football stadium. Nicholas even got to meet Coach Brandon! He got to go in the equipment room, and see the helmets being striped too.

Nicholas was so excited to be able to go there. I can't even count all the times we were in BG and he made me drive around the football stadium. I'm hoping beyond hope that his counts will be high enough to go to the next home game in the middle of October. Before he was diagnosed, Nicholas loved going to all the football games...I mean really, at three years old he would sit through an entire game! Unfortunately, after he was diagnosed we ended up watching the games in the hospital. So...cross your fingers and say a prayer that he'll be able to get to his football games this year without stinky leukemia getting in the way!!!!!
Thanks for checking in, and I'll try to update more in several days.
Kim

Friday, September 17, 2004 11:36 AM CDT

Well, good news...the cultures came back negative again. SO, we are free! BUT...our nurse, who needs to write the discharge, is with a little baby waiting for it to wake up. I hate to be insensitive, but waiting for a baby to wake up???? We have already been waiting 3 hours, and if the baby is anything like what my kids were like...I guess I better go get the stuff back out of the car.

Thank you all so much for the messages in the guestbook. The messages are very reassuring...even when I am frustrated and whining;)

Nicholas is playing in the playroom right now, and is in really good spirits. He actually doesn't want to leave. Can you believe that???!!!???

Kim

Wednesday, September 15, 2004 6:22 PM CDT

We are still in jail!!! Well, I am actually in B.G. at this very moment, and my mom is at the hospital. I left around 6pm, and as I walked outside I was tempted to hunch myself over and start screaming, "My eyes, my eyes!" However, I did refrain. I think I will warn our onc that if we are not released soon they will have to seek a spot on the psyc ward for me.

O.K., now down to business... Both cultures that were drawn on Sunday in the ER are growing different bacteria...which is not good. There is still the hope that the cultures were contaminated, and the bacteria is not from Nicholas's body. On the other hand, if the cultures that were drawn yesterday come back positive, then more than likely, his central line will have to come out. PLEASE GOD LET THESE CULTURES COME BACK CLEAN!!!!! I really would hate for Nicholas to have to go through a surgery right now to place another line or a port. All I ask is that we keep this line until LTM, which hopefully will be in a little over two months from now. He has not had any fevers, the chest xrays that were taken were clear, and were still awaiting the results of the echocardiogram. I guess some of these bugs can damage the heart...nice, huh? Oh, and the antibiotic that he is on, Vanco, can cause hearing loss, and something else...maybe damage to the heart? Like we don't have enough to worry about with radiation and chemo side effects...please add more to our plate!***God, if you are reading this, that last sentence was written with sarcasm intended.***

Today our little buddy Meguire stopped into see us! Thanks for the present! You can visit his site at www.caringbridge.org/oh/meguire. Sorry, I don't remember the tags you can click, so you'll have to cut and paste:) We also met a little girl named Alexis in the hospital. She has leukemia too, and is having a bit of a rough time. Her CB site is www.caringbridge.org/oh/alexis.
Well, I better be going to relieve Grandma.
Thanks for the prayers and messages!
Kim

Tuesday, September 14, 2004 3:58 PM CDT

Just a quick note to let everyone know Nicholas was admitted to the hospital. I brought him to St. V's ER on Sunday because he had spiked a high fever late Saturday night. They drew cultures, and after several hours sent us on our way.

Today, I received a call from the ER stating that one of the blood cultures that had been drawn tested positive for bacteria. Dr. C said that we will be here at least until Friday. I'll try to update more when I find out more.
Kim

Friday, September 10, 2004 11:45 AM CDT

HAPPY BIRTHDAY GRANDMA!!!!!!!
I hate that you are sharing this day with the knowledge that it is the 10 month anniversary of Nicholas’s diagnosis. But, we have come so far, haven’t we? I am so blessed to have you as my mother, and I have learned so much from you. How do I thank you for all you have done, and all you have sacrificed? Through the years you have taught me that family is most important, and because of this I can value what IS truly important in life. Thank you for everything you have done, thank you for everything you have given, thank you for all that you are!!!! We love you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We have had a pretty eventful week, and thankfully it has nothing to do with leukemia. On Tuesday, Nicholas's birthday, I decided I would take him to Build-A-Bear at Southpark Mall in Strongsville. Dave needed me to stop at his office for something (pretty bad that 3 days later I can't remember why), and Nicholas wanted to stop there too.

So, dododo, I'm singing happy birthday to Nicholas, go to pull in the parking spot, and WHAM! I hit a car. Not just any car. Dave's mom's car. She was sitting at the desk in the front of the office and saw the whole thing; only she didn't know it was me at first. Donna didn't see my car until she came outside. Did I mention that her car is only 4 months old, and mine is a little over a year? I felt so horrible, and have never done anything like that...oohhh, it was awful. Now, she has a huge dent in her back bumper area, and I have one to match on my front driver side. UGH!

After I calmed down, Nicholas and I headed off to Strongsville. We ate lunch at Johnny Rocket's, and afterward the wait staff sang Happy Birthday backwards. It was pretty cute...they had given about 5 different ways they could sing Happy Birthday, and told Nicholas to choose one. He was not talking, of course, so I chose the backwards version. They then turned their backs to us and sang Happy Birthday. I think he actually tolerated it better, since they weren't looking at him.

After Johnny Rocket's, we headed to Build-A-Bear. I inadvertently picked up a white teddy bear with a pink nose, and he said, "Yeah, I want that one." I spent the next five minutes going against everything I have ever believed about parents and their ability to perpetuate stereotypes regarding gender roles, and tried to get him to go with the white teddy bear with a blue nose. Hmmm...now that I think about it...I was worried about the color of the bear's nose, yet we were in a teddy bear store. Oh well, we now have a teddy bear with a pink nose that is wearing a football uniform. We did make sure to give the teddy bear a purple heart; the proceeds of which go to fund pediatric cancer research.

That was the extent of Nicholas’s birthday day, and we arrived home just in time to get Zachary off the school bus. We were going to have a birthday party for Nicholas this Sunday in Bowling Green, but his counts are starting to drop. Dave is really, really disappointed about the postponement (note sarcasm), and will just have to watch football all day instead.

Oh, how could I have forgotten the last little tidbit about our week? Yesterday morning Dave came in the house growling, “I just took the trim off the house.” What??? Oh, and might I add our house is as old as Dave’s mom’s car. Our garage doors are single garage doors and boy is it a tight fit. Anyhow, I had gone to the store the night before during our run in with Frances, and since Dave does not have my spot clear in the garage, I had to park in the pouring rain. I was in a different spot than usual, so in the morning Dave had to back out and cut the wheel sharp in order to completely turn around to drive out of the drive. Why didn’t he just back down the drive you ask??? Why, that is a very good question. Dave’s mom’s theory is that he was just jealous of our dents, and wanted one like ours. Oh, and if you ask him, it was all my fault. What am I doing with a house full of boys????

Monday, September 6, 2004 10:30 PM CDT

HAPPY BIRTHDAY NICHOLAS!!!!!!!!! 9/7/2000
In several hours, it will be exactly 4 years since I went into labor with Nicholas. That day started with a trip to the OB/GYN, and he made sure to tell me to schedule an appointment for the following week. I was disappointed and frustrated, and told the doctor that I better not have to make the appointment the following week. I was due in two days. He was certain that I wouldn't be in labor any time soon and sent me on my way.

That night I couldn't fall asleep, and when I finally did, I woke back up. I was staying at my parents, and sat out in the living room staring at the clock. Hmmm...three minutes...no, couldn't be. So, I did what any logical person would do; I took a shower. I was trying not to wake my parents, but I failed, and we got to St. Vincent's some time after 3am. I can remember going up to the seventh floor in one of the fastest elevators known to mankind, and I thought to myself how uncomfortable a fast elevator is when you're in labor.

I had a hard time convincing Dave I was really in labor. I woke him in the middle of the night, and I think he may have actually fallen asleep while I was talking to him on the phone. The second try worked, and I still had to do some convincing. Dave had plans to go to an Indians game that day, and I think he may have thought it was a ruse to get him to not go. After the two hour drive, Dave arrived at the hospital, and my contractions promptly stopped. I was a little jealous that I wasn't going to the Indians game, but not THAT jealous.

The back labor I was having stopped any progress I had made, and Dave sat idly by (I told him to stop breathing when I was in labor with Zachary...he learned his lesson) as I pleaded for the nurse to give me something, anything. Shoot, I would have settled for a KO, but that was a no go, as the nurse said they didn't think I was in labor because of the irregular contractions. So, I took a shower...and another, and another... Finally, around 11am, I convinced the nurse to give me a shot of nubain(sp?). My contractions started again, and everything started to progress. The nurse responded with, "Oh, I guess you really were in labor." I wanted to scream, but instead I demanded the epidural (when I asked for one with Zachary, I was told it was too late...I learned my lesson).

Dave, my parents, and my OB/GYN decided to go to lunch, and while they were gone, Nicholas decided to make his appearance. Sure did freak the nurse out, as she hurried and paged the doc and everyone else. Lucky for her, everyone walked in the room, and the doctor made it just in time to catch the bouncing baby boy...at 12:58pm.

We left the hospital several days later with a perfect, healthy baby. My memories of St. Vincent's during those first days are hard to come by. Those memories have been replaced by new memories from that day almost ten months ago when I walked back in the door with Nicholas. "Go straight to the sixth floor, they'll be waiting for you." Same elevators, same fast elevators, only one floor down. "Mommy, hold me, my legs hurt."

It absolutely amazes me to think how much life has changed for Nicholas in the past ten months. Last year, Nicholas's birthday party was at Chuck E Cheese. We haven't set a foot in that place in over 10 months, and probably won't for at least a couple more years. Never in my life would I have thought his first airplane ride would be for a Make-A-Wish trip, or that Lifeflight would beat out Make-A-Wish for his first trip to the air. Nicholas experienced a lot of firsts...not the type that normal parents would want to write in a baby book though...and has handled everything with a certain grace.

On this day, I reflect back on the short life you have lived so far, and pray to the future. I am not sure what the future holds for you, but I will be there every step of the way with an open heart and open arms. From a happy, smiley baby to a big 4 year old boy with a quick wit, I have enjoyed every step of the way, and am so very lucky to be your mom. Happy 4th Birthday Nicky! I love you! We love you!

Tuesday, August 24, 2004 0:04 AM CDT

I can't believe it has been so long since I last updated! Everything has been going ok the past couple of weeks. Well, if you omit my daily breakdown. 6 more days until school...6 more days until school...

Nicholas had his clinic appointment today, and what should have been a rather quick visit turned into an all day ordeal. We arrived at 11am, got vitals, drew labs, and waited. Then we saw the doctor, and then we waited.

Nicholas's chemo today was count dependent, which means if his counts weren't high enough he would not receive the methotrexate. By the time the labs came back, the onc had left for a meeting...with Nicholas's chemo orders. So, we waited, and waited. Doctor C finally came back with the orders around 1pm, and they were promptly faxed to the chemo mixer people.

Around 2:30pm, the chemo mixer people called to ask, "Do you want me to make this today?" The orders were there for 1 1/2 hours! FINALLY, Nicholas received his chemo. Today he got vincristine and methotrexate. The dose of methotrexate is escalating, which means that as long as his body is tolerating it the next dose will be larger. Even though we didn't leave the clinic until after 4:30, and spent our entire day there, Nicholas was very, very good.

We were able to make it home in time to watch the majority of Zachary's first football practice. I know I'm going to drive Dave nuts through football season. I don't know why, but the roughness of hockey doesn't bother me...the roughness of football does. Afterall, he did just turn six, and I think the majority of the players on his team are eight. They are going into 3rd grade, Zachary is going into kindergarten. I feel like a mother bear trying to protect her cub. Hopefully I get over it soon...I would hate to see myself get booted from the field ;)

Have a beautiful week!
Kim

Monday, August 9, 2004 11:45 PM CDT

Just a quick update to let everyone know everything is going ok. I have been feeling a little under the weather, so the boys have spent most of the last three days with Dave, and I have spent most of the last three days in bed. Dave tells me it's a rotten way to get three days by myself...hmmm...I think I'll be sick again next week ;o)

Nicholas resumed treatment last Wednesday. Everything went well, but it was a very long day. We will be back at the clinic on Friday for another round of chemo. I'll probably update after our visit of Friday...we will see.

Other than that, not too much going on. Zachary has his 6 year well check tomorrow with his new pediatrician. Oh, I called our old peds office to see about getting the boys' records transferred. I was told that we would be charged because of the copies, but they had no idea how much because an outside company does it. Hmmm...ok, let me see...we owe the radiologist oncologist, we owe our onc clinic, we owe the hospital, we owe everyone and their mother...including lifeflight, sure add one more on there! Oh, by the way...do you think you could pick up the tab for the extra chemo and radiation, since you obviously missed the diagnosis? We will have no problem paying for the records then. Sorry, it really burns me. Just like when the ped that TOTALLY missed the diagnosis showed up in the hospital during Nicholas's initial stay...and billed us for it!!! Did he really need $86 that bad???

I'm done now...going to bed so I can stew some more :)
Have a good day(night, whatever), and thank you all so much for your caring words and prayers during the latest bump in the road.
Kim

Saturday, July 31, 2004 11:24 PM CDT

The follow-up EEG yesterday was still abnormal. The MRA was fine, as was the spect scan. So, that leaves us with an abnormal MRI and two abnormal EEGs. They saw white specks in the white matter of the brain in the MRI...and the neurologist is pretty sure the damage and shrinkage of the brain is the result of the radiation. We were told the white matter can repair itself over time, but the gray matter can't. So much information that we don't quite understand yet, but give us some time... Right now we are not altering his protocol for ALL, and hopefully we won't see any more episodes like this.

Thank you all so much for your prayers and messages in the guestbook. I cannot begin to express how much they mean to us.
Kim

p.s. Nicholas and I are staying at my parents in Bowling Green tonight, and I think we are going to try to go downtown tomorrow to see John Kerry. We will see! I’m determined to Nicholas’s picture taken with him…how cute would that be?

p.s.s. I figured out how to put the links up…much easier than copy and paste. It took my dad and me a very long time to figure it out, so do us a favor and visit the following Caringbridge sites and send some positive thoughts!

Victor's Site

Keegan's Site

John's Site

Colin's Site

Thursday, July 29, 2004 9:22 PM CDT

Well, we still don't have a definite answer for what is going on. Here is what we do know:
1) the MRI shows shrinkage of the brain...our onc says this can be caused by the steroids, and is not that unusual. Nicholas has not been on steroids for over 2 months.
2) the MRI shows abnormalities on both sides of the brain, not just the left side...which is what the EEG showed
3) the speck scan (the one with the injection of radioactive dye) did not show anything
4) we are still waiting for the results of the bone scan to see if there is something going on with his growth hormones, and for the final results of the MRI
5) tomorrow, Nicholas will have an MRI angiogram(I think that is what it is), and a repeat EEG
6) we did not see the neurologist or endocinologist today, so we really have no idea what is going on.

I'll update more when I know more. Dave is at the hospital tonight, and I am at my parents getting some much needed R&R. Please keep Nicholas in your prayers tonight. Thanks for all the well-wishes in the guestbook, the support really does make all of this a little easier.
Kim

p.s. I belong to an online support group, and Nicholas is not the only one struggling this week. Here are their caringbridge sites...please keep them in your prayers as well (sorry, I am tech illiterate and don't know how to put the links, so you will have to copy and paste :o[
Victor's Site

Keegan's Site

John's Site

Colin's Site

Tuesday, July 27, 2004 11:19 PM CDT

Brief Wednesday update:
Nicholas had several tests done today to help determine what is going on in his brain. The neurologist said that the seizures were in the left part of his brain, and the EEG showed abnormalities on that side. They are keeping us here at least until Friday so they can repeat the EEG and get a better handle on what is happening.

Nicholas also had an MRI today. We will find out the results tomorrow, and hopefully this will give us a good idea of what we are dealing with.

The endocronologist came in as well. They will be checking his hormone levels, and a bunch of other things...cortisol...and I can't remember what else.

Tomorrow morning Nicholas will go for a scan of his brain with radioactive dye...nice, huh? He was going to have the scan done right after the MRI, while he was sedated, but the mixture of the chemicals didn't pass. The lab that mixes this radioactive whatever went through three kits, and none of them passed. Which makes me wonder... Anyhow, they used all the kits they had, and had to send down to Columbus for more. SO, we are looking at another day with sedation, and another day NPO(nothing per oral).

Nicholas was miserable today because he could not eat or drink, and it was very difficult. He is bored and does not want to be here. Neither do I, for that matter. The big question now is whether or not to start treatment for the seizures. Their are pros and cons both ways, but because Nicholas had cranial radiation, the neurologist is leaning more towards treating. We will see. Until then...we wait for test results.

I'm going to wrap it up...I'm tired and rambling. I'll update more when I can...it is difficult being able to update in the hospital.
Thank you all for your prayers and messages.
Kim

Tuesday, July 27, 2004
We had the scare of a lifetime today. Started out as a normal day...Nicholas woke me up at about 7:30, I made him eggs and toast, gave him some milk...and everything was fine. Later, Zachary woke up...so I started making him breakfast...warmed up some pancakes, got the butter and syrup out of the fridge, got the pancakes out of the microwave, and heard a small bump on the floor.

I turned around to see Nicholas laying on the floor. I said his name, and received no response. He lays down on the floor alot, so it didn't strike me as odd until I said his name again and he didn't move at all. I thought he was playing one of his games, so I went over to him and picked him up. His head was fixed to one side, and his eyes were wide open and not moving.

I ran him over to the couch, sat him upright and tried to move his head to look straight. No response...no eye movement...no body movement...no sound...but he's breathing. I left him there and ran for the phone. I thought I had left it in the computer room, so I darted up the stairs...no phone. Ran back downstairs, and found the phone on the island. Called 911. It seemed an eternity as I spoke to operator...I could barely breathe...I need an ambulance...my son...he's 3...he has leukemia...he has factor V leiden...blood clotting disorder...he's not moving...please get someone here fast...where are they...he's throwing up now...the police are here...click.

I kept yelling to Zachary to go get my cell phone out of the car to call Dave. My cell phone was in the house. Luckily, Dave called...Zachary answered the phone and the policeman went to take it from him when Zachary said that Daddy told him he would call right back. Dave was no longer on the line, and had no idea.

Scott, Dave's friend, had called Dave on his cell phone, and that is why Dave told Zachary he would call back. Scott pours concrete for our development and called Dave to ask him what was going on at our house. Dave said, "Nothing, that I know of." To which Scott said there were 3 police cars and an ambulance at our house.

I took Nicholas's shirt off him, and the paramedic scooped him up and took him to the ambulance. He was finally coming around, still not normal, but coming around. I ran upstairs to change my shirt, and saw Scott standing outside our front door. He said he would take Zachary, so out the door we went. Nicholas was pretty upset on the ride, mostly I think from being put in the ambulance while I was changing. Dave pulled up to house as we were leaving, so we had a whole entourage...ambulance with lights and sirens...Dave's car...and Scott's big work truck.

The paramedics thought Nicholas was just choking, but I knew that was not the case. It was probably two hours after we got to the hospital that he had another episode. Not as severe as the first, but frightening just the same. I called the clinic and our case worked said we would have to be transported to Toledo. After much discussion, the doctors determined it would be better to lifeflight him to Toledo rather than take him on a two hour ride in an ambulance.

SO, today...Nicholas and Dave had their first helicopter ride. Needless to say, Dave enjoyed it more than Nicholas. Dave's mom took Zachary, and I ran home to shower and put a bag together for all of us. The helicopter ride took 35 minutes, which is pretty amazing, and my parents actually saw it flying over Toledo as they made their way to the hospital.

Tonight Nicholas is doing much better. He has not had any other episodes (or seizures), and they are going to run a ton of tests tomorrow. We spoke to our oncologist tonight, and she explained everything in detail...most likely not a stroke...the methotrexate can cause seizures...some kids develop seizures while on treatment...most seizures stop when the kids go off treatment... We will know more tomorrow when we meet with the neurologist.

I thought we were handling this cancer situation pretty well...well, as well as it can be handled, I suppose. For something like this to happen just makes me so sad, and it absolutely breaks my heart to have to watch one more thing happen to Nicholas. It reaffirms to me that we can't ever be comfortable in this situation. Now, I will not ever be able to leave him alone...I will be watching like a hawk...What if I hadn't been there? What if I was in the shower? What if he was playing downstairs in the basement? What if he was playing in the gym on the concrete floor? Dave and I are now going to have to have a very lengthy discussion with Zachary about things to look out for...he is 6. This is not normal. No parent should ever be put through this hell!!!!

Please, please, please say a prayer for Nicholas.

Love,
Kim

p.s. Zachary finally lost the pesky front tooth that I never thought would fall out. What a day!

Monday, July 19, 2004 10:55 PM CDT

I'm really slacking on my journal updates. We have been busy, busy, busy...just not with clinic visits and chemo. I drew Nicholas's blood today, and received the report back that we are a go for tomorrow. YIPPEEEE! Nicholas has been delayed two weeks now because of low counts. His ANC is over 750, and his platelets are fine, so tomorrow he will begin IM#2.

The only bad part is he has to receive a "back poke" tomorrow. I hate when he is sedated. It's hard to explain, so I think I'll stop there, but it just reminds me of how vulnerable he is (ok, so I didn't stop, but now I will).

Last week was pretty good for us. Thursday night Dave took me to Dave & Busters for my birthday. We actually had a lot of fun, and I think it is only the second or third time we have been out together since Nicholas was diagnosed (IN NOVEMBER!)

Friday was a big day for all of us, but mostly for Zachary as it was ZACHY DAY. Dave's mom proclaimed Friday Zachy day, and took him to Cedar Point. He was so excited! I received a call after they went on the Iron Dragon, and Zachary said it was too fast. I asked him if he cried, and he said, "No, but I screamed the whole time." He ended up going on it again...so much for it being too scary!

Dave went golfing on Friday...all day, and was gone all night, so that left me and Nicholas. I have forgotten how hard it is to entertain one child all day long. We went to the park...twice, the airport...twice, and the railroad tracks...countless times, but we had fun.

Hmmm...trying to think of what else we did. Sorry, drawing a blank. I'll wrap it up, so I can make sure I get out of bed by 7am (not easy for me to do). I need to make sure Nicholas gets breakfast before 8am, because after that he can have NOTHING! We normally are scheduled for the 11am spot for spinals, but tomorrow we are scheduled at 2pm...yuck! With sedation, Nicholas can not eat anything 6 hours prior, oh, and only clear liquids until noon. At least he is not on steroids!
Please say a prayer that his spinal fluid is clear and free of any bad cells!
Thanks for stopping by, and if you do PLEASE, PLEASE, PLEASE sign the guestbook!
Kim

Saturday, July 10, 2004 7:23 PM CDT

HAPPY BIRTHDAY ZACHARY!

This has been a rough week for us all around. Today is Zachary's sixth birthday, and it also marks the eighth month since Nicholas was diagnosed. It bothers me that I can't just say today is Zachary's birthday...and that in my mind the day is filled with happiness and sadness. Happiness in that Zachary had an excellent day filled with bowling, pizza, cake, presents, family, and friends. Sadness in that Nicholas had to wear a mask around his friends, but at least he did not have to miss the party.

I drew Nicholas's blood on Tuesday, and soon found out that his hemoglobin was low, so...out to Toledo we went. They started the RBC transfusion at 10pm, and we did not leave the hospital until 2am.

While there, I noticed one of our little friends from the clinic was inpatient as well. His mom saw me and came out to talk. I asked her how Meguire was doing, and she told me he was having trouble breathing, so they admitted him for observation. The next sentence that came out of her mouth caught me off guard and felt like someone knocked the wind right out of me. Meguire relapsed. Meguire has the same disease as NIcholas, only Meguire was low risk...Nicholas is high risk. The categories mean: low risk to relapse...or high risk to relapse. Hopefully you see what I am getting at.

All I have to say is that I hate this roller coaster ride we are on. It is not fair. It is not fair for parents to have to be witness to this illness, and it is not fair for precious, innocent children to be stricken with this disease. Meguire and his mom helped me out so much in the early days of this mess. I was asked by our case worker if I wanted to speak to another parent, and I really didn't want to. In the early days, I wanted to let all of it go, I didn't want to know anything at the moment, and I surely didn't want to meet another parent who was already in the thick of treatment.

As I sat talking to our case worker, Meguire's mom walked in the room and said, "Hi, Pam." When she left the room, Pam turned to me and told me that that was Meguire's mom. Her face was etched in my mind as I sat there and wondered what the journey was going to be like, and in her face I saw sadness.

It was probably a day later when I walked into our hospital room after a trip home, and found Meguire and his mom talking to Dave. Nicholas was practically bedridden at the time, and there was Meguire. Meguire was bouncing around, little bald head and all, chasing Nurse Ellie. I couldn't believe what I was seeing. What??? You let him run? You let him near other people without a mask on??? Omigosh...I can't believe how much energy he has!!! And Christie assured me the journey gets easier. And I have come to believe her. And then this. Relapse. It is what everyone one of us in this strange club of ours fears, but as the journey goes on, that word is filed in the brain in the "On the Need to Know Basis" file. And the journey goes on. Until it touches you personally. My heart is bleeding for their family, but I sincerely believe Meguire will be ok. The journey goes on...

I printed out the poem above, and gave it to Christie. I don't really cry too much anymore, I have my moments, but for the most part we are coping. I'll admit, I copied this poem from another CB site (if this was your site, thank you!), and when I read it, all the emotion started flowing. This is the best explanation that I have found as to why my child has cancer, and I hope maybe, just maybe it was able to give Christie some comfort.

Please keep little Meguire in your prayers, as now his course of treatment has changed. He is back in remission, but the road he must travel now is much more difficult than the previous.

So, on this 10th day of July, Zachary celebrates his sixth birthday, and my mind does not wonder back to that day in 1998. It wonders back to that night in 2003, in the hospital, where we were not welcoming in a new baby, but praying to God to save the life of our son. And the journey continues...
Kim

Wednesday, June 30, 2004 9:02 PM CDT

Well, we are nearing the end of the dreaded delayed intensification phase. I am happy to report Nicholas did very well. He needed three transfusions...plasma, red blood cells, and platelets. While this may seem like alot, it really is not for him considering he was already at 20 various transfusions before this phase began. I can not thank people who donate blood enough...it is extremely vital to Nicholas's survival. Ergo, if you have not donated blood recently, PLEASE DO!!!!!

Nicholas's ANC(infection fighting cells) is low right now. It has been hanging out around 400, so we really have not been doing too much. His ANC has to be above 750 to begin the next phase, interim maintenance #2, which is supposed to start next week. The first interim maintenance was very kind to Nicholas, and the hope is that the second one will be just as kind.

Other than that not too much going on around here. Oh, except Dave turned 30 yesterday! What an old man! I searched and searched for the perfect card for him, and I think my favorite was the one that when opened up said, "But, I will always be younger than you." I figured I wouldn't rub it in though, so I chose another one.

Hope everyone has a nice week:)
Kim

Thursday, June 17, 2004 9:32 PM CDT

I would like to share something...
About a month ago, I began running. I have become so tired of being overweight, especially since gaining 20 lbs. in the 7 months after Nicholas was diagnosed. I started out 2-3 times a week...1/2 mile, 1 mile, but it stopped there. I was becoming discouraged at the thought of a 10 minute mile, as I could run a 7 minute mile regularly in high school. Soon I figured out that even though I was running, 10 minutes of exercise 2-3 times a week is really not that much. I have now slowed my pace and have started running 2 miles at minimum 4-5 times a week. My ultimate goal is to be able to run a 1/2 marathon for Team in Training (TNT), which benefits the Leukemia and Lymphoma Society, in the spring of 2005.

Tonight was the third time in the past month that I saw a rainbow while running. When I was driving to the track, an awful front came in. The lightness of the sky was gobbled up by a dark blanket. It was a very bizarre sight that came with lots of lightning, thunder, and high winds. I waited in the car until most of it had passed, and finally decided to run in the rain. The sun was starting to show, and then they appeared. Not one rainbow, but two. It was the most magnificent sight. As I ran around the track, the rainbows followed me...all I had to do was look over my shoulder.

I don't think it is a coincidence that I have seen so many rainbows in such a short time all while running. Running has become my peace, my solitude, my time to make sense of all we have been through. Through the darkness comes light, and through the light comes rainbows. Not one, but two...signifying hope for today, for the future. At times, hope seems to be faint, much like the second rainbow. The first seems to grow off the second, and becomes stronger and brighter. That is the hope I have for the future. No parent should ever have to endure this pain and heartache. We were admitted to a club we did not want, and only the members of this club can truly understand what this journey is like.

What is my hope for the future? My hope is that Nicholas remains in remission, that the toxicity of these drugs don't kill him, that the cranial radiation he received doesn't harm his developing brain or cause cataracts, that he doesn't have dental problems as a result of the chemo, and that he is not stricken with a secondary cancer. My hope is that Zachary makes it through this unscathed. My hope is that sometime in the future cancer will be discussed right along with polio. Polio was something that was very real, scary, and deadly at the time, but is now talked about in the past tense. Cancer should be the same thing. Where is the cure????? Why is the government not doing more? Why is it that cancer is the number one disease killer of children...more than AIDS, more than cystic fibrosis? Why is it that each day 46 children are diagnosed with cancer? Why was my child one of those 46 on November 10th, 2003?

Below I am including a link to sign a petition for the childhood cancer stamp. This stamp would benefit cancer research, and so far has not been accepted. It baffles me that they can commemorate all sorts of moronic things, but they can't give childhood cancer a stamp of its own? What about the breast cancer stamp? They got their own stamp, and that is only one type of cancer. Childhood cancer includes ALL, AML, NHL, HL, brain tumors, bone cancer, and unfortunately much, much more. Please help and sign the petition.

Not sure if any of this makes sense to anybody...maybe I have finally lost my marbles. I started writing this Thursday night, and now it is Saturday morning. Just to let everyone know how cancer disrupts lives... This was supposed to be my weekend off. I was going to go back to B.G. Friday, stay the weekend, go to the race at MIS, and then come home (Avon) late Sunday. Yes, I know it is Father's Day weekend, and it might be a little untimely (and selfish of me), but I neeeeeeed time to do normal stuff in the woorrrrssst way. So, I have had this weekend planned for 3 months with my best friend. This weekend happens to include the last of Nicholas's doses for ARA-C. ARA-C is extremely tough of Nicholas, and at the clinic on Wednesday, his counts showed that his hemoglobin was dropping along with his white blood count. I had counts checked locally yesterday morning (Friday), and sure enough..........he needed a blood transfusion. Instead of driving 2 hours to B.G., we drove 2 hours to Toledo, and enjoyed a nice 5 hour stay in treatment room #2. Then, we had a nice 2 hour drive back home. It is now almost 10:30 Saturday morning, and I think I am going to attempt to leave. Hope everyone has a nice weekend; I am going to attempt to enjoy what I will have left of mine.

Wednesday, June 9, 2004 10:20 PM CDT

Good News! Nicholas's chest xray looked good, so we are home! I didn't want to mention the alternative earlier, well...because I didn't want to think too much about the alternative. If Nicholas's line would have been out of place, he would have had to go to surgery to have a port placed in his chest. Alot of children begin treatment with a port (which is an internal catheter, that involves a poke of the skin to access it). There are draw-backs to both catheters...Nicholas can't get his chest wet, which means no swimming and makes bathtime difficult. However, I can draw his blood at home and take it to the hospital without him having to step a foot out the door. I can also administer some of his chemo that goes in his line at home, which cuts down on the number of trips to Toledo. The odds are that somewhere down the line Nicholas will have to get a port, but I hope it is farther down the road.

Nicholas and I made it home just in time for our meeting with his wish granters from Make a Wish foundation. I made sure to tell Nicholas and Zachary to be on their best behavior while the ladies were here. That might have been a mistake, as they turned into wild animals the moment the first wish lady arrived. I don't know what it is with my children...I think in moments like that they really are transformed into aliens. That is no child of mine!!!

Anyhow, aside from the children acting like crazed lunatics the meeting went well. We gave the months of Nov, Dec, or Jan as possible times of travel. I will post more when I learn of all the good details. :)

Hope everyone is doing well, and if there is anyone out there who still reads this.....PLEASE SIGN THE GUESTBOOK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thanks,
Kim OwouT

Wednesday, June 9, 2004 11:52 AM CDT

Nicholas was admitted to the hospital yesterday for his scheduled inpatient overnight stay. He did very well with everything including his spinal tap. We were given our discharge papers an hour ago, and we are still here. Nicholas had been complaining a tiny tiny bit about his line feeling like it was coming out, so I decided to change his dressing before we left.

Anyhoo...long story short: Dr. C was still here so I had him look at it and he ordered a chest xray to make sure it is still in place. (PLEASE BE IN PLACE, PLEASE BE IN PLACE, PLEASE BE IN PLACE!!!) Now, we must wait for the results of the xray. I will update more later...

Kim

Thursday, June 3, 2004 4:06 PM CDT

Just a quick note to let everyone know Nicholas's counts were not high enough for him to receive chemo this week. I am going to draw his blood tomorrow, run it to the local hospital, and hope like crazy that his counts have recovered. Tomorrow night we were invited to the Toledo Mudhens baseball game by our clinic, and I would hate for Nicholas to miss out on this if his counts are low. Also, I was asked to do a televised interview with Nicholas and Dr. Jasty for Children's Miracle Network. Nicholas will also be there with me...we are taping on Saturday (thank the lord it isn't live...I have a habit of sticking my foot in my mouth :O ), and it will air on Fox 36 on Sunday. I still have NO IDEA what I am going to say, so it should be comical to say the least. Stay tuned.....

Kim

p.s. as long as Nicholas's counts recover we will have our overnight hospital stay on Monday.

Friday, May 28, 2004 11:27 PM CDT

Well, this week has been a quiet one. Yeah, right! Who am I kidding? Nicholas had his visit to the clinic for labs and a physical exam on Monday. Still feeling the effects of the steroids, he was begging to go to B.G. to Grandma and Pappy's for Mac and Cheese. We had left the clinic and were half way to B.G. when our case worker called and said she looked at labs and Nicholas needed plasma. So, it was not the quick trip I had hoped for...we spent the entire morning at the clinic and evening at the hospital for the transfusion.

***Little side note***
When Nicholas was diagnosed with leukemia, he was also diagnosed with a blood disorder called Factor V Leiden. Factor V Leiden is not new to our family. My father was diagnosed with it after undergoing genetic testing following a stroke and several blood clots. We were fortunate to know of this as some of the side effects of some of the chemo drugs in the most severe cases, result in strokes. Ergo, any time Nicholas's fibrinogen drops below 100 (normal is 140-420 mg/dL), he receives a transfusion of plasma.

For any of you interested in the medical field...
Factor Five Leiden is a autosomal dominant blood coagulation disorder. It's non-sex determining and passes from generation to generation, (which means I have it too.) It's the most common disorder of this type in the United States, found in a average of 5% of Caucasians and 1.2% of African Americans. The term Leiden comes from the name of a city in the Netherlands where FVL was discovered in 1994.

Factor Five is a normal protein found in the blood, it helps to form the blood clotting cascade. In fact, it works within this cascade to help with the formation of blood clots when needed. Factor Five must also be able to work as a anticoagulant when the need for clot formation ceases. This is where the problem lies, when you have Factor Five Leiden, the mutated form of this gene, it than becomes resistant to another protein called (APC) activated protein C, whose job is to bind with Factor Five to stop the clot formation. This resistance to APC makes Factor Five respond at a slower rate, which increases the risk of venous thrombosis, a blood clot in a vein. So, Factor Five has no problem with clot formation. The problem is when the clot formation should cease.

Another name for Factor Five Leiden is protein C resistance. Protein C deficiency is rare and in this case is acquired in connection with Factor Five Leiden. So all people with Factor Five Leiden will also have activated protein C resistance.

Since Factor Five Leiden is autosomal it affects men and women equally. Each person has two genes for Factor Five. We all get one from our mother and one from our father. If you inherit a single bad or mutated Factor Five gene from one of your parents, you would be heterozygous. If you inherited a bad/mutated gene from each parent, you would be homozygous for Factor Five Leiden. Every person who is homozygous for FVL will always have children that are heterozygous, one mutated gene. If you only have two genes and they are both mutated, you still have to give one of those to each of your children. You don't have a normal gene to give.
-http://www.factorfiveleidensupport.org/

Pretty interesting stuff, huh? O.k., now for those of you who are still awake...thank you for stopping by. Next week will be a difficult week if Nicholas makes counts. I can honestly say I will not be disappointed if he does not make counts...this next batch is extremely strong, and I am not looking forward to it. I will keep you updated!
Kim

Thursday, May 20, 2004 0:56 AM CDT

I realize it has been quite some time since I last updated this page, but I really wanted to be able to write some profound piece on what I have learned in the past six months. Simply put...the words came to me late one night last week, and left just as fast. You know, that is the amazing thing about the human mind...the ability to forget. Things I would like to forget, I don't, and things I would rather not forget, I do. Go figure.

Last week marked the sixth month anniversary of Nicholas being diagnosed with leukemia. The day before he was diagnosed was really not a significant day, until Dave's mom told us that she thought Nicholas might have leukemia. The day still was not significant. It is one of those things when you go, "Hmmm, that's interesting, but no not my child, thank you."

That Sunday night my thinking changed as I gave the boys a bath and Nicholas started crying that he wanted to get out of the tub. It was then that I noticed the small purplish dots that covered his legs. Alarmed, I called my mom to come over and check it out. She tried to set my mind at ease, but after the boys were in bed I started my research on the internet. The rest really is history. It was then that I realized that my child had leukemia, and our lives were about to change forever.

For people who know me, and know me well, know I have absolutely no memory, but those days will forever be etched in my mind. As I watched the new slideshow that I put up here I was overcome by sadness. It was neat to go back through pictures from last summer, which quite a few of them are from, but it is just a reminder of how quickly life can change.

Hmmm….what have I learned in the past 6 months? I have learned to not let cancer rule our lives. Granted, not a day goes by that I don’t think of it or am reminded of it (is that a double negative? Sorry…I digress;) but we take each day as it comes, and take a little extra time for extra hugs and kisses. Have I become a better mother? Well, that could be debatable. I still yell, still have little patience, still hate whining, but I think I am more tolerable. What have I learned the most? I have learned the determination and resilience of children who battle this disease is tremendous and amazing. There are so many things I have learned, so many things I never thought I would be faced with, but at the end of the day I thank God and pray for another day as beautiful as today.

To cap off my (late) 6 month entry I have compiled a top ten list of:
Ways you know you are a parent of a cancer kid…
10. A roadmap does not refer to driving directions.
9. ‘Roid rage does not refer to a 20 something body
builder, but to your sweet angelic 3 year old that
just devoured 5 pieces of toast saturated with
butter, and is now angrily attacking the couch with a
baseball bat because you won’t allow him to have
another.
8. Your idea of time by yourself is a quick trip to the…
pharmacy to pick up more steroids.
7. You take your child to the hospital for a spinal tap
as often as you go grocery shopping.
6. You know every nurse at the children’s hospital by
name (and the toll booth workers, and the fast food
workers, and the pharmacy workers, and the…ok I’ll
stop there.
5. You can correctly identify the following terms: CK,
CCG,COG,ANC,WBC,RBC,HGB,HCT,ATM,NCCF,BMA,BMB,CBC,EFS,
Dx,IM,DI,LTM,ATM,ATM,ATM, etc, etc, etc
4. The 20 pounds you gained in six months can not be
attributed to being pregnant.
3. You enjoy watching ER because it makes you feel
smarter by actually knowing what all the medical
jargon means.
2. You give high-fives to your CK for a job well done in
swallowing 7 pills at a time.
1. Kids with hair look funny.

ANYHOO... Thanks to all who happen to stop by and leave messages! I really, really enjoy reading them...I mean Nicholas enjoys reading them (hmm, I always forget that this is his journal :)
Kim

Saturday, May 1, 2004 9:37 PM CDT

I am happy to report this week has been filled with more highs than lows. After our unneeded visit to the clinic for a (not) clotted line, we decided to stay in Bowling Green so Zachary could attend the last week of his pre-school. Nicholas had also attended this preschool before he was diagnosed in November. Ms. Cyndi was kind enough to allow Zachary to come back and visit whenever we were back for Nicholas's treatments, and it has been so nice to be able to keep some part of Zachary's life normal. The Child Development Center has been part of our lives since the fall of 2001, and it is sad to have to finally say goodbye to it.

On Wednesday, I got Zachary ready to go to CDC. Nicholas got really excited and said he wanted to go. He has done this before when I have had to drop Zachary off, but when we would get there, Nicholas would refuse to get out of the car. This time was different, and as I stood in the cubby room, Zachary said, "Bye, Mom," which was immediately followed by Nicholas saying, "Bye." He wasn't saying bye to Zachary, he was saying bye to me! I was absolutely floored!

Nicholas was very excited. It was so nice to see him so happy. He really has not been around any other children, except for Zachary, since he has been diagnosed. He hasn't been able to see his former schoolmates since then either. I talked to Ms. Cyndi, and she said that all the children were healthy, not so much as the sniffles, so I let him go. His ANC is high enough right now, and it still made me nervous, but I let him go.

Nicholas went to CDC with Zachary on Wed. and Thurs., and was going to go on Friday, but as I stood in the cubby room with Nicholas, (Zachary had already gone in to the school), I overheard a mother tell our teacher that her son had a fever that morning. She gave him tylenol, and he seemed to be doing better, but she hated to see him miss the last day of school. The gravity of what we are dealing with smacked me in the face as I sat down in one of the cubbies to explain to Nicholas that we had to leave. How do you explain to a 3 year old over and over again that he or she can not do something because someone else may make them sick? Even though his ANC is high enough to fight infections, I knew it was a chance I could not take. Dejected, I walked Nicholas to the car and called Dave.

While on the phone with Dave, Zachary came to the window of CDC. Dave and I decided that it would be best to not take the chance and have Zachary exposed to anything either for fear of bringing it home to Nicholas, so I rolled down my window and told Zachary we had to leave. Oh, it was so awful! Zachary came out to the car crying. So, now I had Nicholas upset and Zachary devastated because he had to miss the last day of school and he would never see his friends again. How do you explain to a five year old that he has to miss out on something yet again because his little brother has cancer??? I felt terrible, and my heart absolutely broke. This incident reaffirms how unnormal our lives are, and I hate it.

On the more positive side...today, Dave and I had a surprise for the boys. Dave was able to get tickets to an Indians game from a guy he works with. (THANKS STEVE!) We wanted to head out early so we could catch the Rapid (train) to downtown Cleveland, because the boys love it, but we are never early (Dave was actually too busy watching "Angels in the Outfield" to leave in time), and we had to drive instead. They did not figure out that we were going to an Indians game until we were actually at Jacob's Field.

The tickets were for club seats, and included all the soda and food you could possibly imagine. They had numerous food stations set up inside...pizza, burgers, subs, gyros, pasta, salad, french fries, onion straws, nachos, etc. You name it, they had it. Free ice cream, free hot pretzels, free everything, well, except for beer. It was absolutely the coolest thing! After having lunch, we went to our seats. A food vendor came around with peanuts and popcorn, and I asked for peanuts. Dave reached for his wallet, she handed me the peanuts, and walked away. They were free, too! We had so much fun, and even though there were more empty seats than people, the Tribe pulled through! Of course, it went into 13 innings, and Nicholas fell asleep in the 10th inning, but he awoke in time to see the Indians beat the Orioles!

There was a 60hance of rain today, and thankfully, the rain held off for the game. However, being by the lake makes the temperature about 10 degrees cooler, and it was freezing! My only regret of the whole day is... that I didn't bring a blanket! Other than that it was a wonderful day!

Nicholas starts Delayed Intensification #1 on Monday. He will receive an LP, or back poke as Nicholas calls it, and several different medications. This will be a hard hitting phase, so extra prayers are needed!

Zachary's last spring league hockey game is tomorrow. I really shouldn't say his "last," because they do have a championship and consolation game. HOWEVER, I hate to say this, but his team is not very good. They have lost every game except for their first, in which they tied. Needless to say, they don't have a chance in h-e-double hockey sticks to play next week. More on that subject later...
Until then, good day!
Kim

Wednesday, April 28, 2004 11:31 PM CDT

Just wanted to provide a quick update since it has been a couple of weeks. I am happy to report absolutely nothing is going on! Nicholas has finished his IM #1 phase, and is set to begin delayed intensification (DI#1) on Monday. This phase (IM#1) has been so nice because his counts have stayed good. However, as our nurse at the clinic puts it, delayed intensification will sock you between the eyes. Needless to say...we are not looking forward to it.

This week we had to make an unexpected trip to Toledo to our clinic. I thought Nicholas's central line was clotted, and I tried everything within my power to get a blood return. Nothing worked, so we headed to the clinic. On the very first try our nurse was able to get a blood return and flush it. UGH! Go figure. I did not have Nicholas positioned right when I was trying to flush the line, and that was the entire problem!

I will try to update more in a couple of days, but for now it is off to the land of z's. Thanks for stopping in!
Kim

Tuesday, April 13, 2004 10:02 PM CDT

I know it has been a while since I last updated, but we have been extremely busy! It is a good busy, as we have moved into our new house, and took a quick trip to Washington D.C. Nicholas has been doing quite well during this phase. His counts have remained high and we have enjoyed doing a few things we would have never been able to do had his counts not been high enough. This week is his last week of this phase, and then he will have 16 days off chemo until the start of the next phase, delayed intensification.

We are trying to brace ourselves for the next phase, and honestly, I am scared to death. Nicholas's onc informed me she has lost kids during delayed intensification. The difficult part of chemo is that it has to be powerful enough to kill the leukemic cells for good, and in doing so, healthy cells are killed, too. The risk for infection is extremely high, as there is nothing left in the body to fight anything off. That is why I am constantly talking about his counts, and why we do not dare go anywhere when his counts are low. We will pray like crazy that his body can better handle this next phase than the first two phases (induction & consolidation). If you will recall, Nicholas had many transfusions, hospitalizations, and was neutropenic(when his body does not have any infection fighting cells) for the most part of these stages. Just remember, pray like crazy!!!

On to lighter news...As I previously said, we were in D.C. over Easter!!! We drove in late Saturday night, o.k., it was more like 1:30am Sunday morning, but at least we made it there safely (after all, Dave was driving ;) It was so very neat to drive in and see the monuments lit up. We had several instances in our time there where we ended up where we should not have been. The first occurring that night driving in...when we ended up at the Pentagon. Directions get confusing in D.C., and we ended up at an entrance to the Pentagon that I really do not think we were supposed to be. Luckily, we made a quick detour, found our way onto the proper highway, and eventually found our hotel.

The second mishap occurred Sunday, while sightseeing by car. We decided to find the White House, and stupid me, I really should have known it was near the Washington Monument. BUT NO, we had to take the tour of D.C. that no tour bus would ever take tourists on. We ended up by RFK Stadium, which is not one of the best areas. Just driving back and forth, up and down streets, and I kind of felt as though I was driving through a neighborhood just outside of downtown Detroit. I was driving, and I let Dave navigate. So, there we are, in the middle of the projects, and Dave says to me, “According to the map…we should be on top of the White House.” Finally, we gave up and headed back to where we started, near the Washington Monument. When we got closer, we noticed signs leading us to the White House. We were less than a block from it when we started out, and never knew it. We literally drove around a seedy part of town for an hour looking for the White House! UGH!

The third mishap occurred when we were leaving D.C. on Monday. Again, I was driving and I let Dave navigate (boy, do I need ONSTAR!). We drove around and around in circles, in squares, in triangles, in just about everything looking for the right roads to lead us home. We got off one exit and promptly arrived at a military base that posted a sign something to the fact, “Authorized Vehicles Only.” There was nowhere for me to turn, so I rolled down my window and told a young MP we were lost. He yelled to the people at the checkpoint I would be coming in to make a u-turn, and gave us directions back to the road we wanted. As I drove by, a man at the checkpoint came out to jot down my license plate. I thought to myself, “Great, I probably just made their top ten list of suspicious people!”

Our entire reason for going to D.C. was for the White House Easter Egg Roll, held on Monday. The NCCF (National Childhood Cancer Foundation) invited children with cancer and their families to attend the event. This event is also open to the public, and I was informed that some of the public camp out for 24 hours to receive tickets to this event. We were fortunate in that we did not have to wait in line, and that it rained. I cannot believe I am writing that we were fortunate that it rained; however, the egg roll generally sees a crowd of well over 10,000 people. I think the rain kept many away, and for that, I am grateful. It truly was a wonderful event, and I still cannot believe we were there, on the White House lawn, playing, coloring Easter Eggs, and having a good time. Zachary and Nicholas were whiny for a little part of it, but got excited when they saw strolling characters of their favorite T.V. shows, and the Easter Egg Roll itself. I promise to get pictures posted as soon as I can. It was such a neat event!

It was also neat that we were able to meet several families from my internet support group for parents of children with ALL. Unfortunately, they were all able to meet Sunday night after the ticket pick-up for the event. If you read above about our car tour of D.C., I think you can understand why the kids had not had dinner by the time we went to pick up our tickets. Unfortunately, we were not able to stay and meet all the families, as our children had turned into wild animals that had not had a morsel of food for days! SO, we skipped out on the meeting so the little heathens could eat. For the families we did meet, thank you for your kindness, and it is so nice to know there are people out there that do understand exactly what you are going through. These families may live in D.C., Long Island, Minnesota, or wherever, but there will always be a common bond between us all. All right, enough of the warm fuzzies already! Anyhow, it was neat, but my only regret is that I never really spoke to Jennifer K, Kristie (the wonderful caring bridge writer whose journal can always make me laugh when I feel like crying), Lola, and Darlene. Hopefully I did not forget anyone, and hopefully someday we can all meet…maybe next years Easter roll? I will make sure to have OnStar by then :^)

Kim

Monday, March 29, 2004 11:05 PM CST

Wow! That is what I think about this past weekend. Words really can not describe what Dance Marathon meant to us. The BGSU students who participate in this event and sacrifice their own time for the children are absolute heroes. What they have done for Children's Miracle Network and Mercy Children's Hospital is the reason we travel to this area for treatment. This year, through their hard work and determination, $150,000 was raised to benefit Children's Miracle Network.

More importantly, this event was about so much more than money. Since Nicholas was diagnosed in November, we have seen some very dark days. This event and the participants associated with it have brought light and love into our hearts. I am absolutely speechless when it comes to articulating how thankful I am to those involved.

We have met so many wonderful people, and I would love to thank each one individually...but one giant THANK YOU! will have to suffice. I would like to thank the four organizations that sponsored Nicholas as their miracle child: Offenhauer, Mac, Kappa Delta, and Kappa Kappa Gamma...each and every one of you are angels! To all the girls who arranged for the hockey players to come see the boys...THANK YOU (and the hockey players), and for the ones who tried to reach Josh Harris...THANK YOU! Sara Flynn: It was brought to my attention that you are only a freshman. To this I had no idea, for your level of maturity and devotion to the children is enormous. It is my hope that we will see you at the next three dance marathons! ALSO, I would like to thank your mother, and any of the other parents that came to see Dance Marathon and all the hard work that was put forth. That parents would drive to BG for Dance Marathon exemplifies your passion and love for what you do. Kim: Thank you for sharing with me the story of your dad. This gives me hope for the future. I wish I could recall more names, but my mind is drawing a blank...not a big surprise...but I thank you!

I can guarantee you the memory of this weekend will stay with me forever, and we will return every year. It is my hope that all of you return every year as well...even as alumni. Dance Marathon is more than 32 hours, or a semester, or a year...it really is forever.
Thank You!
Kim

Friday, March 26, 2004 11:24 PM CST

Tomorrow is the big day!!! The 9th annual BGSU Children's Miracle Network Dance Marathon begins tomorrow morning at 10am, and continues through Sunday, concluding at 6pm. The statistics surrounding this event are pretty amazing:
• BGSU’s Dance Marathon is currently the LARGEST student run philanthropic organization in Ohio, and the THIRD LARGEST IN THE NATION!!!!!!!!!
• Over 100 campus organizations participate in Dance Marathon
• Started in 1995, DM raised $45,476. The money raised has grown each year…last year growing to well over $270,000!
• Hundreds of students sacrifice their own time to make a difference in a child’s life! “It’s for the kids,” is an expression I have heard numerous times in the past months.
• These precious people stay on their feet for 32 hours…for the kids!

I must admit, when I first signed up for Nicholas to be a miracle child, I had no idea what was in store for us. We signed on during our initial hospital stay at St. V’s after Nicholas was diagnosed. At the time, Nicholas was so sick that I thought there would be no way possible that he would be able to make it to Dance Marathon in March. Here we are, the night before DM, and Nicholas’ counts are the highest they have been since he was diagnosed! I can not even explain how much it means to me that he is well enough to go. We now have the chance to thank the individuals that have made a difference in our lives…in person.

Because of the effort of all individuals involved in DM, the last 4 ½ months have been more tolerable. I find it amazing that our wonderful playroom at the hospital was largely funded by BGSU’s DM. What would we do without it? Chances are, although we love the staff and the oncologists, we would have transferred hospitals. We now live 2 hours from St. V’s Mercy Children’s Hospital. Like I said to some of the participants, “I would much rather drive the two hours and know we’ll be comfortable, than drive a ½ hour to a closer hospital.”

Live Video Feed of BGSU’s Dance Marathon Starting at 10am Saturday

PLEASE CLICK ON THE ABOVE LINK TO SEE THIS AMAZING EVENT. OPENING CEREMONIES BEGIN AT 10 AM SATURDAY.

Saturday, March 20, 2004 11:33 PM CST

This week has been alot quieter than last. Last week, Nicholas was admitted to the hospital again with a fever. We were there from Thursday to Saturday. The phase that he is on right now requires clinic visits every ten days for chemo. He received his chemo in the hospital last Saturday, so we had this entire week off without a trip to the hospital or clinic. I just realized that this is the first week since November that we have not made that trip!

Anyhow, he is scheduled to receive chemo on Tuesday, and his Peg shots (in the muscle of each thigh) on Wednesday. I will draw his blood at home, run it to the local hospital, and if his counts are good, we will head out to Toledo. I don't know why I am even planning anything, because every time I do, something goes wrong! Oh well, I am planning on Zachary, Nicholas, and I staying in B.G. for the rest of that week, because of Dance Marathon next weekend. Hopefully everything works out.

I received an email this week from Frieda Falcon. It is pretty neat how this came about. Dave's brother, Brian, is a Marine and is currently in Afghanistan. My previous information that I posted on this was wrong, courtesy of Dave. So, here is the correct information, as I understand it. Hopefully I get all of this right...(Brian, if you read this and anything is wrong...Sorry!) Anyhow, Brian went to school with the girl who is Frieda Falcon. Brian must have told her about Nicholas and I am assuming mentioned something about Bowling Green. So, somewhere down the line Frieda Falcon got my email address. She said she heard about Nicholas through the grapevine. I emailed her back and told her I thought it was pretty amazing that she heard about Nicholas through a grapevine stretched halfway across the world.

Hope everyone is doing well!
Hi Brian!

Kim

Tuesday, March 9, 2004 10:48 PM CST

I am glad to say there is really not too much to report. Nicholas has been eating more and sleeping less, so things are starting to look up right now. We have been stuck in the house for several days though, and I think we are all suffering a little from cabin fever. WHERE IS SPRING!!!??? I thought it was finally going to warm up, and then what do you know...it snows!!

We will be heading back to Toledo tomorrow, as Nicholas' line is clotted...again! He will receive chemo on Friday, so we are just going to stay at my parents in B.G. until then. It will be nice to get out of the house, but I just wish there was more that we could do.

I made an appointment today for Zachary to go through kindergarten screening. He is very excited and made sure that I told the lady on the phone that he liked hockey. Avon offers full day kindergarten which is really neat. BUT, it costs quite a bit of money, and with a new house, a ton of medical bills, and more, I don't know if it will be possible. We will see though.

A cool point of interest: This year, for the annual Easter egg roll on the White House lawn, cancer children and their families are invited. It really is being held at an inopportune time, and I really wish they could hold it at a later date, but I am determined that we are going. It is held the Monday after Easter, and we may have to sleep in the car, but we are going! I may be the only one in the family who wants to go, but the rest can suck it up! The kids may not know what the White House is, or who the president is, or that we even have a president, but I do, and we are going!! I know I have to get a better argument to convince Dave though! Oh, did I mention it is a 6 1/2 hour car ride?

Thanks for dropping in! Please remember to leave a message in Nicholas' guest book...I like to read them, uh, I mean he likes to read them ;)
Kim

Monday, March 1, 2004 6:10 PM CST

Just another quick update...
Nicholas was released from the hospital Friday. He has started to eat more at home, but is still sleeping alot. We were supposed to start phase #3 today, but his central line was clotted so we took care of that today. He is scheduled for an LP tomorrow. It has been awhile since his last "back poke" and I pray that everything will go well. I really did not think he would be ready to start this phase yet as his counts were so incredibly low Friday. His counts have recovered, and his ANC is above 750... so we are a go. Thanks for everyone who stops and checks in!
Kim

Monday, March 1st, 2004 4:07 PM CST

Just another quick update...
Nicholas was released from the hospital yesterday. It was very nice to finally get out after spending four days there! All the cultures turned out negative, but he is still running a low grade temp. Anyhow, our excitement was short lived as he was admitted back in the hospital this afternoon. He is not eating, and is sleeping alot. They drew blood for more cultures to see if they can find out what is going on. I will update when I find out more...
Oh, I almost forgot, his ANC is up to 10! Pretty impressive jump from that big goose egg yesterday! His platelets are also slowly rising, so hopefully he will not need a transfusion!
Kim

Friday, February 20, 2004 3:11 PM CST

Just a quick note to say that Nicholas was admitted to the hospital yesterday for fever. They tested for strep, which was negative, and we are awaiting the results of the blood cultures. He has an ANC of 0, which means he has absolutely nothing in his body to fight off anything. His Onc made it clear that we will be here at least until Sun...maybe Mon. I will update when I know more.
Kim

Tuesday, February 10, 2004 5:10pm

Just a short note to say we have been admitted for a short stay. I was correct to assume Nicholas would need platelets. His platelet count was down to 11, which is extremely low. I don't have what the normal counts would be, but I think it is well over 100. He has even more bruising and has presented petichiae (sp) which is a give away for low platelets.

Anyhoo, he is sleeping right now and has actually said he wants to spend the night. I hope that we get done way before that is a consideration, but I don't know if that is going to happen. They just started his platelets, and are going to wait two more hours before giving him the PEG to make sure he doesn't have any reaction. Then they will observe him for a couple more hours. Hopefully all will go well, though.
Thanks for checking in!,
Kim
p.s. Today marks three months since we found out Nicholas has leukemia. It seems like it was just yesterday, and then again it seems like so long ago. We are right down from the room Nicholas was diagnosed in and it is just so odd to think back to those days. Although nothing seems for certain anymore, the utter uncertainty in those days has faded a little...not much, but a little. Every day is a victory, and every day we come closer and closer to defeating this awful disease. Nicholas has been a trooper through it all, and there are actually days when everything does seem to be normal. Then there are days like these where the gravity of the situation hits like a ton of bricks.

Monday, February 9, 2004 11:43 PM CST
This past week has been pretty uneventful, minus our extended visit to the clinic last Tuesday. I decided it would be a quick trip, so instead of dropping Zachary off in Bowling Green, Nicholas, Zachary, and I went to the clinic. We arrived at the clinic around 1:30, and Nicholas and I did not leave the hospital until 11:30pm. Nicholas' labs revealed that he needed a unit of red blood as his hemoglobin was 7.4 (normal is 11.5-13.5). The red blood cells are transfused over three hours, so we had to make a lovely visit to the hospital! Luckily, my mom came and picked up Zachary so he did not have to stay there the entire time, although he really did not want to leave!

Anyhoo...tomorrow we will be heading back to the clinic. This time, I will not expect a short trip, and I will make sure to take Zachary to B.G.! Nicholas will be receiving his PEG shots (1 in each leg). The shots are very painful, and last time they were given he had a reaction, so...our oncologist wants him to be monitored for four hours!!! On top of all this, Nicholas' counts have nosedived. I don't need any labs to tell me this, because I can tell just by looking at him. I am 99.9ure he will need to have platelets trasfused as he has bruises all over his legs, and some on his arms, oh, and one on his head. The one on his head would not even be noticeable if he had hair to cover it up, but... he tipped over in one of his chairs and bumped his head on the wall, and now there is a nice quarter sized bruise. I would hate to say that he inherited the ability to run into just about anything from me, but...

Hope everyone is doing well. Thank you so much for visiting and leaving messages. If there is one thing you can do, please DONATE BLOOD!!!!

***More Funny Things Nicholas Has Said***
I was rubbing and kissing Nicholas' head and told him how much I loved his little bald head when he exclaimed, "I don't have a football head!!"

Thursday, January 29, 2004 0:07 AM CST

I really need to start updating more regularly! O.K., what have we missed:
This past weekend- Dave brought Zachary back to Bowling Green to see the Harlem Globetrotters. My mom was gracious enough to purchase tickets for them to go. It was kind of disappointing that Nicholas could not see any of it, though. He was a little upset that he couldn't go, and I had to tell him several times that Scooby Doo was not going to be there. One of our many Scooby videos has the Globetrotters in it, and Nicholas really thought Scooby was going to be there. What a double whammy that would be! Missing Scooby and the Globetrotters!!!???
I did try to see if the Globetrotters practiced before the public was allowed in the arena, so Nicholas could watch, but got no where. We were basically told that the university was just providing the facility for them, and has no control over anything. Come on, like they didn't have a contact person? The other thing that irks me is that Nicholas is one of the Globetrotter 2000 Babies. When Nicholas was born, I signed him up to be one of these children. Essentially, any child born in 2000 had the opportunity to be part of the promotion where they would receive free admission to the Globetrotters for life. Anyhow, I sent them an email, because 3 years later, I have abolutely no idea where the card is that was sent to us! I never received an email back from them. Oh well, when all of this is over with I will make sure Nicholas gets to see them! Dave and Zachary did have a good time...minus Dave locking his keys in the car at my parents house :O

Monday: I drew Nicholas' blood at home and took it to Elyria Memorial Hospital. It is so nice not to have to drag him out in the freezing cold, or into a lab where people are coughing and sneezing and very germy! However, I was reminded of my dislike for that place! I had to wait forever. Evidently, the blood took on it's own person as it had to wait in the waiting area with coughing, sneezing, and very germy people to be registered! I was rather aggravated! This being the first time I attempted to do this at home, I was rather optimistic, but that soon changed. Supposedly I will have to repeat the same process every time I bring in his blood...and this was supposed to save time! In all, I was there for an hour. Next time, I am going to go the restaurant route and try call ahead seating. We will see if that gets me anywhere!! Anyhow, his counts have recovered...so he is back on chemo.

Tuesday: Back to Toledo for an inpatient stay, as Nicholas received another round of Cytoxan (you know, the one that is toxic to the kidneys). Everything went smoothly, and we are now in Bowling Green for a few days. This will give Zachary the chance to see his old classmates at the Child Development Center. They both miss it sooooo much! Ms. Cyndi is so wonderful in allowing Zachary to visit when Nicholas has to go for treatments.

FUNNY STORY of the DAY: Nicholas fell asleep shortly after settling in our room at the hospital. When he woke up, he said he had to go potty, so I grabbed the urinal thingy as quickly as I could and helped him pull down his pull up (pull down pull up?, anyways...). He looked down and said, "Mom, why they put meatballs in my pull up?" The nurse had put cottonballs in there to have a sample to test. She had a really good laugh when I told her of his question. Much to his dad's displeasure, Nicholas calls his chapstick "lipstick," so it seems we are developing our own system of language. Someday I think I might try putting my "lipstick" on with a "meatball". It can't hurt can it?

Monday, January 19, 2004 0:02 AM CST

Sunday was a very good day for all of us. ()Well, except maybe for Dave. His beloved Eagles, it seems, will be missing the Super Bowl yet again!

Anyhow, tonight I took Zachary and Nicholas to skate with the Falcons. I had not planned to take Nicholas as our Onc really wants us to be prisoners of our home, but... I did take him. My mom sat in the stands with him while Zachary and I skated, or should I say, while Zachary skated and I tried to keep up.

Nicholas was very excited to be there. It was his first trip to the ice arena since he was diagnosed. He has missed out on alot- the Blue Jackets/Mighty Ducks game, numerous BG games (football, hockey and basketball), his brother's games, etc, and this was really the closest thing he will have to a hockey game for a long time.

The best part of it all was that Nicholas got to see Freddie Falcon. Nicholas loves all the mascots...even SIC SIC with their silly masks, and especially Frieda Falcon. Anyhow, I went over to where Freddie was and asked him if he would come say, "HI," to my son, who was sitting up in the stands. Freddie, as many of you know, can not talk, so he held out his hand and together we walked up to Nicholas.

I told Freddie, as we walked hand in hand, that Nicholas likes Frieda better, and ended our one sided conversation with, "He has leukemia. He was diagnosed in November." It is so unfair that I even have to say anything about this disease that has totally consumed our lives, but I didn't want Freddie to freak out when he saw Nicholas with a mask on and very little hair. Freddie was great, though, and we were able to take many pictures. I will put some of these on the site when I have them. Oh, Nicholas played shy for Freddie, which he normally does for any giant stuffed birds, but came out of the shyness a little...to ask where Frieda was:-)

Zachary had a good time skating. I don't know why I didn't just save the money and take him open skating, though. The whole point of skate with the Falcons is to skate around and have the players autograph the team picture. I handed Zachary the picture as he was about to go on the ice, and he just handed it back to me and said, "Na, you keep it." I told him he needed to get the players autographs. He told me to do it. It was a battle I knew I wouldn't win.

Needless to say, I was not about to go around asking these hockey players for their autograph, without a little kid accompanying me! I can see it now...
ME: Can you sign this for my son?
HP(short for hockey player): Well, where is he?
ME: He is the one skating around, oblivious to the fact you guys are here.
HP: Why didn't you just bring him open skating? Do you want our autographs that bad? You could have saved yourself $11.
ME: Yeah, THANKS!
Anyhow, hope everyone is doing well. I am taking Nicholas to the clinic tomorrow to have his counts checked and then we will have an overnight stay Tuesday. I will try to update after that.

Kim

Tuesday, January 13, 2004 11:38 PM CST

I am sorry it has taken me so long to update, but with the move the cords for my computer have been MIA. Let's see what we have missed:

1) The rash that Nicholas developed after his LP last week (the one that made us have an overnight stay in the hospital) was able to disappear on it's own. Thank goodness! We were discharged and traveled back to Grafton...I think it was Tuesday.

2) That Thursday, I changed his dressing and tried to flush his line. I was unable to pull back on the syringe to get a blood return...and was unable to push any of the saline through. This reminded me, all to well, of the very first time I tried to do this at home. That time, they thought the line was clotted and put some medicine in his line to disolve the clot, which did not work. The surgery crew was about to put him on the schedule to have his line replaced when the surgeon determined that the stitch at the site was too tight. He cut the stitch and everything worked perfectly.
Needless to say...Nicholas and I made another trip to Toledo. Once at the hospital, our nurse tried to access the line and was able to get a blood return the first time. Thank goodness! I felt a little more than a crazy mother, though! It worked out well, because Nicholas needed to have platelets transfused. We were at the hospital from 5pm-11:30pm. The blood bank at the hospital is so depleted that someone had to go to the Red Cross to get his platelets!
I can not say this enough...PLEASE DONATE! We do not have a direct donor program set up for Nicholas, although I am thinking about checking into it. BUT, there are many more people who are in the same situation as us that depend on blood and blood products to fight this awful disease!

3) This past Monday, Zachary came with us to the hospital for Nicky's LP. They both did really well. I think Zachary had a better time than Nicholas did, though. Zachary was Chatty Cathy the entire time. It seemed as though I fed him several spoonfulls of sugar before we got there! Everything went smoothly, and...we are now back in Grafton.

I think that is it for now. We will be inpatient next Tuesday as Nicholas will again receive the drug that is toxic to the kidneys, and they want to make sure no damage will be done.
Oh, I believe Nicholas is back to his normal weight. The water weight has left the building along with his hair! He has the same amount of hair he had when he was a baby! He is still cute as ever and hopefully I can get Dave to update the pictures soon!
Lots of Love,
Kim

Tuesday, January 6, 2004 10:19 PM CST

I am quite perplexed as to what happened to this page. For some reason the page became supersized. Hopefully this entry will be smaller.

Yesterday was a crazy day at the hospital. We went to the clinic first for a CBC. Then, we rushed over to the hospital for radiation. Then, we went back to the clinic to wait until our check in time (1:30) in the peds icu. Well, we received his labs and his counts were in the pits. So, Nicholas needed a platelet transfusion before his LP (which was scheduled for 3:00). Anyhow, it was not until after 4 pm that the procedure could be started. It was pretty rough considering Nicholas could not eat anything all day because of the sedation.

After the platelets, LP, and Peg, we were ready to be discharged. AH, but things can never be that simple. I noticed that Nicholas had developed an odd rash on his belly that stretched up the back of his neck. Long story short...he had to be admitted.

He was hooked up to a huge monitor all night which measured his heart rate, respirations, and oxygen levels. The machine kept me up alot of the night. It beeped anytime a reading was abnormal...which was alot because he was sleeping. Good thing he could sleep through it!

Dr. Jasty was very concerned about the rash that he developed. She thought that it was either from the platelets or Peg. It was just very odd because he was premedicated before the transfusion to help ward off any adverse reactions. If the reaction was because of the Peg, it would be very serious because it is a powerful chemo drug. I personally think that it may have been caused by the moriphine. This was the first moriphine was used. Whatever the cause, we must now carry around shots with us in case Nicholas has an allergic reaction.

We are soo glad to be home...and I am so tired. Hope everyone is doing well and thanks to all for continuing to sign Nicky's guestbook. OH, I ALMOST FORGOT! Tomorrow is the last day of radiation!!!!!!! I am so glad that that will be over...and will pray that he does not have to have it again...but, we will miss our techs, as they have been truly wonderful.

Sunday, January 4, 2004 11:23 PM CST

hello this is nicholas. juuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuusssssst wanted toooooooooooooo ttttttttthhhaaaaaaaaaaaaaaaaaannnnnk allllll oof yyyyyyyouu.

Well, the first line worked well. I guess we need to enroll him in advanced typing:)

Nicholas is doing really well. Tomorrow he will have an LP along with chemo, a shot of PEG (actually two shots in each leg...into the muscle), radiation...and I am sure there are one or two more things I am leaving out. Anyhow, we are going to have a fun day at the hospital (not really).

Things you may or may not want to know about our weekend:
1. We are proud owners of a hole! It is the most expensive hole I have ever seen! Who knew a hole could make someone so happy? O.k., enough gushing, but it is official...ground has FINALLY been broken on our new house! We all got a little muddy checking out our new hole, and we had to convince Zachary that he was not allowed to go into the hole, but it sure was a nice site to see.
2. It appears as though Dave and I have been taken for a ride. While I was in the shower yesterday, Dave took a call from Best Buy. The guy told Dave that I was two months behind and owed $66. Dave came and told me this when I got out of the shower. After a discussion that went something like this:
Me: That's not right. I paid it online at the same time I paid my other credit card. That makes me mad...something must be wrong with their online payment service.
Dave: Well, I paid it over the phone.
Me: That's not right. I KNOW I made the payment!
So, we looked at my account online and sure enough my account was current! I did make my payment, I knew it! I called my credit place to find out why someone called to take a payment. Imagine this, no one called from there! Upon searching their database with my social security number, another woman's name appeared on a credit card! What? It was even a platinum card! I can't get a platinum card using my own social security number, but some lady can...using my social security number?

The worst part of all of this is...Dave gave all of our checking account info over the phone to pay by check. We figured out that the platinum card was probably just a data entry error...and that it is possible that the lady was not trying to steal my identity (which is what many people I spoke to at the credit card company thought was happening). But, now someone out there has all of our checking account info! Needless to say, we had to put a freeze on our account. Like this is something we want to have to deal with right now! Just cut us a break, come on! Another bad thing...Dave and I had just watched one of those insane identity theft commercials, and it cracked me up! Then all this happened! "Like totally..."

AND FINALLY...
3. Just a quick apology to all the drivers on the Ohio Turnpike heading west, between Cleveland and Toledo. It was I that traveled at the astonishingly fast speed of 40 MPH the entire way. What I do not understand is, how many cars do you have to see off the road before you slow down??? I know I ticked off quite a few people...but the only thing I could think was, what happens to his central line if by chance we get in an accident? I think every time that thought entered my mind I slowed down a couple more MPH.

With the above in mind, my thought of the day is:
You have to slow down to enjoy...
all the idiots who did not.

Until next time,
Kim

Tuesday, December 30, 2003 10:57 PM CST

Hello Friends! Hope everyone is having a wonderful holiday. I would love to say ours has been one of relaxation, but it has been rather hectic.

Yesterday, Nicholas was scheduled for his LP with ITMX...in English, he had a spinal tap and was given chemo into his spine. We went for radiation first and then rushed to the Peds ICU, (where they always do the procedure). Upon arrival, our sedation nurse told me that the mother-in-law of our oncologist on duty just died, so we needed to prepare quickly. I was a little worried about what he would be concentrating on, but everything seemed to go o.k.

Nicholas also had to have a blood transfusion yesterday as his hemolglobin was running low at 7. The transfusion went well, minus the fact that we were in the hospital for 9 hours and Nicholas threw up after it. Other than that everything was fine!

We spent all day today moving...UGH!!! I can not say enough how much I hate moving! For now, all the contents of our B.G. apartment are in our living room in Grafton, and will remain there until our house in Avon is complete. Man, is this complicated or what? Nothing can ever be simple.

Anyhow, hope everyone has a safe and happy New Year. Please remember to donate blood. Northwest Ohio is experiencing shortages right now, so donations are critical.

Thanks for all the thoughts and prayers!
Kim and Fam

Wednesday, December 24, 2003 0:17 AM CST

Happy Holiday to All!

Nicholas and I returned from the hospital today...or, looking at the date I suppose I should say, yesterday! He officially started phase 2 (consolidation) on Monday. New chemo drugs will be introduced in this phase, so just pray that he can tolerate the new ones as much as he has tolerated the others. We had to stay overnight Monday because of one of the new drugs. The drug can damage the kidneys, so they wanted to make sure everything would be o.k.

Monday morning Nicholas received his first treatment of radiation, and did really well. Still no need for sedation. It just amazes me that he can be bouncing off the wall and then be perfectly still for the techs. He had another treatment today, and will have one more tomorrow (Christmas Eve), before receiving an extended weekend from radiation.

Nicholas was more than ready to come home, but also enjoyed his overnight stay. His favorite nurse Ellie was there to take care of him. He even managed to weasel a Pepsi out of her! I had gone down to the cafeteria and when I came back up, I saw Ellie in the hallway and she asked me if I allowed him to drink Pepsi. I told her that I don't, especially because I know how I drink it. She told me that she asked him if he wanted something to drink, like a Sprite or Pepsi...needless to say, he perked right up and told her he wanted Pepsi. It was so funny to see his face when I walked into the room. He could hear me talking to Ellie in the hall, and he knows very well that he is not allowed to have Pepsi. The smile on his face was absolutely priceless! He was so proud of himself!

We also saw Santa. He gave Nicholas a vacuum cleaner! Too bad it wasn't a real one! My floors sure do need some help. He had alot of fun cleaning the floors of the hall...I just hope no one was trying to take a nap!

Anyhoo, we hope everyone has a very happy holiday. We will be heading to the clinic first thing in the morning and then over to the hospital for radiation. I hope to not be up there very long, but I am done trying to set anything in stone.

Wednesday, December 17, 2003 12:47 PM CST

Nicholas was fitted for his mask for radiation on Monday. He did really, really well. A sedation nurse went down to radiology oncology with us just in case he needed to be sedated. He was absolutley perfect, and only let out a little whimper when they first placed the mask over his face. Later, he told me that it was hot and that was why he cried. I think that he was not expecting the material to be warm and it startled him. After that, he did everything that was asked of him and did not even move a hair. So, we are going to try radiation without sedation. Everyone was really impressed with how good he is for his age.

After he was done with his fitting, radiology oncology decided to schedule our first treatment on Tuesday (yesterday) at 8:00am. This may be a shock to some of you, but I really I am not a morning person. Anyhow, I started thinking Monday night that Nicholas should have a CBC before starting treatment. Not that I am a doctor, or even know why it would be important to find out what his counts are before starting, but it was really bothering me.

After getting ready Tuesday morning, I called radiology oncology to inform them that we were running late. His first treatment, and we are late...great. For once, my lateness paid off. I was able to call our clinic and talk to our nurse, because by the time we were on the road, the oncology clinic was open. His counts did need to be checked because he can not start consolidation until his ANC is over 750, which also means he can not start radiation until then.

For now, Nicholas is off treatment until his counts come up. We are supposed to have his blood drawn on Sunday, to see if he is ready to start back on his treatment on Monday, the 22nd. We will see though.

Wednesday, December 10, 2003 11:22 PM CST

Today Nicholas had his day 28 bone marrow. The preliminary results look good with the marrow showing no signs of leukemia as well as the spinal being negative for leukemia. They will have the full results back tomorrow which hopefully will just confirm the results given today.

Yesterday, we were informed on the future phases of treatment. The next phase is called consolidation, which Nicholas will start next week. Nicholas is considered a slow early responder (SER) because of his results from the day 7 marrow. Although the day 14 marrow was very good, his course of treatment is planned according to the results from day 7 because he is high-risk.

It came as quite a shock when we were informed that beginning next week, Nicholas will receive 1800 rads of cranial radiation every day for the first ten days of consolidation. This has put an even larger damper on the upcoming holiday. Chances are, Nicholas will receive radiation on Christmas Eve, but will be given Christmas off. We will probably be looking at the same thing for New Year's Eve. It is difficult not to focus on the side effects of radiation, but it is explained to us that radiation will cut down his chances of relapse and will hopefully prevent him from having to have higher doses of radiation in the future. Again, we will cross our fingers and pray like crazy as we try to get over yet another hurdle.

Lastly, I would like to send a large thank you to everyone for your support and prayers.
I would also like to thank all who have sent messages in the guest book. If you have not done so, please take a moment to leave a note or simply your name as we read all of these to Nicholas.

Sunday, December 7, 2003 0:18 AM CST

Friday afternoon we had our consultation at Rainbow Babies in Cleveland. The doctor and the nurse were very nice, but we are seriously considering staying at St. V's in Toledo (which would mean that we would have close to a two hour commute to the clinic when we move.) We will see though!

Nicholas actually got to throw a couple of snowballs today. He was so excited to be outside! It was only for a couple of minutes, but he really enjoyed himself. Zachary was a great big brother and made several snowballs for Nicholas to throw at Birthday (paternal grandpa).

Nicholas is doing well right now. His little cheeks have filled out and he has taken to sticking out his belly and exclaiming, "I'm fat!" The steroids give him an incredible appetite and I can not wait until they are phased out! It seems the only thing I can get done in a day is make him food. Hungry in the middle of the night, early in the morning, late in the morning, lunchtime, right after lunch, early afternoon, mid-afternoon, late-afternoon... o.k. I think I painted a clear enough picture, but he just can not have enough food right now.

It is hard to believe, but this Wednesday is the day 28 bone marrow. This will be the true test to see if healthy cells are coming back and leukemic cells are staying away. I will post another entry when we receive the results back (probably Thursday). Until then, we will pray like crazy.

Wednesday, December 3, 2003 11:11 PM CST

Today was our first day at the clinic for chemo. It ended up being a 5 1/2 hour visit. Nicholas needed a transfusion for plasma which was administered after his chemo. All went pretty well- minus the fact that almost 5 1/2 hours of being "plugged in", as Nicholas calls it, is a very long time for him. I think he associates the IV pump with the hospital and does not like having to be restricted in his movement.

The nurses are absolutely wonderful. Tracy and Marcy give him so much attention even though he refuses to talk to them. He just clamps his mouth shut and grins whenever they come into the room.

I learned alot from this visit. Mainly that it is extremely important to come prepared. I had one pull-up, no food, and no extra clothes. Oh, and only one dollar, which is not enough money to buy food for a three year old on steroids. Needless to say, I made a trip to the ATM, and several trips to the hospital cafeteria. From now on we will bring a backpack full of supplies.

This entry is going to be rather short as I am very tired, but I wanted to include a poem I found that really expresses alot of what I feel. Oftentimes, day to day worries, rather trivial, get in the way of the real emotions of being a parent. The truth is, no matter how hard we try, we can only do so much for our children. It is times like this that one can be reminded of how little control we actually have. The one thing we can control is the love we give and at the end of the day all that matters is that we did our best.

Just For This Day:
Just for this morning, I am going to smile when I see your face and laugh when I feel like crying
Just for this morning, I will let you choose what you want to wear and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up, and take you to the park to play.
Just for this morning I will leave the dishes in the sink and let you teach me how to put that puzzle of your together
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both of the toys.
Just for this evening I will hold you in my arms, and tell you a story about how you were born, and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late whilst we sit on the porch and count all of the stars.
Just for this evening, I will snuggle beside you for hours and miss my favorite TV shows.
Just for this evening I will run my fingers through your hair as you sleep
I will simply be grateful that God has given me the greatest gift ever given
I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children’s graves instead of their bedrooms, and mothers and fathers who are in hospital rooms, watching their children suffer senselessly, and screaming
inside that they can't take it anymore.
And when I kiss you good night, I will hold you a little tighter, a little longer, it is then, that I will thank God for you, and ask them for nothing except one more day.
Author unknown

Monday, December 1, 2003 10:47 PM CST

On November 10, when Nicholas wanted more than anything to go to the babysitter's, I took him to the doctor instead. No call, no appointment, just showed up for them to tell me what I already knew. The day before, BopBop, Nicky's paternal grandmother, informed Dave and I that she had looked in her old medical book under bruising. She did not want to tell us what she found, and reluctantly she said that under bruising "Leukemia" was listed. Nicholas presented all the symptoms.

That night I returned to B.G. and researched leukemia on the internet. I knew. I called Dave at 7:30am the next day extremely upset. I knew. So we went to the doctor. Dr. Carmen examined him for what seemed less than a minute. She knew. I was already crying-- she didn't have to say a thing. I didn't want to hear it. He just wants to go to the babysitter's and go to school and go to football games! She leaned close and in almost a whisper admist all she was saying the only word a heard was, "cancer." I called Dave from the doctor's office and told him we were being sent to St. Vincent's. He had already called his mother that morning. I believe he knew. We left the doctor's and made the drive to downtown Toledo to the hospital. Nicholas became upset when he found out that he would not be going to school that day, and we would soon find out that he would not be able to go back to school.

The first order of business at the hospital was to draw blood. I held his free hand and tried to secure his upper body from moving as they tried time and time again to get a vein. Every time, his veins blew. Finally, in desperation, I pleaded with them to give him a break. I did not know at the time that there is a cream called EMLA that numbs the site of injections that they could have placed on him!

At 3pm (Nov 10), Nicholas had a spinal tap and bone marrow biopsy. We would find out the results, which would reveal the type of leukemia, the next day. There are two categories- ALL and AML. ALL has the better prognosis, so we spent that night hoping he had ALL. It is so surreal to think that we were HOPING that it was ALL. The results came in and it he was diagnosed with high-risk ALL. He is high risk because of his initial white count which was well over 80,000.

November 12, Nicholas received his central line, which is where his chemo is delivered. It is his buddy that he named "No One."

On day 7 of his treatment, Nicholas had another bone marrow procedure. The results were not favorable. We were given the results at the clinic after we had left the hospital. It appeared that Nicholas was not responding as they had hoped to the treatment. Dave and I didn't speak except for me to tell him to slow down. That was it. The entire drive back to B.G. in silence. He later told me that it was as though someone stuck a pin in him and all the air was sucked out. In an instant we deflated.

We had to wait an agonizing week for the day 14 marrow to take place. This marrow would show that Nicholas made it over the first hurdle. His body has responded and the percent of leukemic cells are less than 5%. No protocol change. No being dubbed "slow responding." He is responding. We will beat this! And so our journey begins.

We are exactly three weeks into this scary ordeal, and it does not seem any more real today than it did then. It is during times like this that I can almost believe that life is still normal. Nicholas is sleeping, it is quiet, and everything seems o.k. I look around and am smacked in the face with the realization that life is not normal. I am surrounded by medications and medical supplies and books about childhood cancer with small children and bald heads gracing the covers.

Why does this happen? It is bad enough that adults are diagnosed with cancer, but why children? Why my child? The doctors simply say that we will never know. A monster has reared it's ugly head and it will forever be chasing us just as we are trying to chase it away.

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Nicholas is an October Child of the Month for Make A Child Smile!!! Please click here to see Nicholas and to find out how to make a child smile!

Nicholas is an October Child of the Month for Make A Child Smile!!! Please click here to see Nicholas and to find out how to make a child smile!

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Nicholas is an October Child of the Month for Make A Child Smile!!!
Please click here to see Nicholas and to find out how to make a child smile!

Nicholas is an October Child of the Month for Make A Child Smile!!!
Please click here to see Nicholas and to find out how to make a child smile!