Journal History

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Friday, November 16, 2007 1:02 PM CST

9 years ago today Mark and I were blessed with the most wonderful gift....Jake Austin Griffin. I can not believe he would be 9 years old today. I can not even begin to imagine what he would be like. Who would he be?

Since his death November 16th has been such a diffiuclt day for Mark and me for many reasons. We have always struggled with what to do? Do we celebrate, do we ignore it etc. How do we make it through the day while still honoring Jake and celebrating that I gave birth to him on this day 9 years ago? It was especially difficult before Colton entered our lives. When Jake dies we went from being a family to being a couple.

This year was different. Today we actually had a birthday party for Jake. Colton had friends over to play and celebrate. We had lunch, we had brownies and we sang Happy Birthday to Jake. What a beautiful day.

Happy Birthday Jakey Bear. Mommy and Daddy miss you so much.

With Love,
Susan, Mark, Colton, Cannon, Catherine and La La kitty

Monday, November 5, 2007 1:20 PM CST

Wow, Wow, Wow. Okay, in our last update I told you that Mark and I are incredibly sleep deprived. In hindsight that was a HUGE understatement. Mark and I are running on approximately 2 naps a night. I call our nighttime sleep naps because we get about 3-4 hours a night broken up into 2 or 3 short periods of sleep. Our new little bundles of joy are so darn cute but they really know how to be rascals at night, and they take turns.

Now for the news. Cannon and I had our first ( and hopefully last) ER trip and hospital visit last week. One night last week he felt hot and when I took his temperature he had a fever of 101.7. Apparently a fever that high in a little munchkin means an immediate trip to the hospital for testing. Blood tests, spinal tap, IV antibiotics etc. to make sure he does not have something dangerous going on with him. Thankfully, he does not and it was just a virus thanks to big brother Colton, but we did get to have a 3 day "vacation" before being discharged. Mark did a wonderful job at home with Colton and Kate.

Colton seems to be adjusting well to the babies. He initially had a very difficult time with it, especially because there are 2 of them, but I am trying to help him understand that Mommy and Daddy still love him even though we have more babies. It is a huge adjustment and learning process for all of us.

We have two Birthdays coming up this month. Jakey Bear would be 9 this year on November 16th which is so unbelievavle to me. We miss him so much. Who would he be if he was still here?

Colton will be 2 on the 28th of November. Until then I have 3 children under 2!! The twins will be 2 months on the 26th.

Blessings,
Susan

Thursday, October 11, 2007 5:47 PM CDT

Hello to friends and family who still come check on us. We have some wonderful news to share. Our family has been blessed....TWICE. We added two new HEALTHY members on September 26th.


CANNON THOMAS
7 lbs 2 oz
20 inches

KATHERINE JUDE
6 lbs 13 oz
20 1/2 inches

We are extremely sleep deprived and as happy as clams. You really can not belive how little sleep you get with two newborns in the house.

I have added a photo of the babies in the gallery.

I will update again soon also.

Colton is doing so well. He is such a happy, loving, sweet little boy. We have been blessed with a wonderful family. We miss Jakey Bear so much...each and every day but healing is a little easier with new life and laughter filling our house.

I must sign off because the babies are telling me they need me.

With much Love,
Susan

Thursday, March 30, 2006 8:54 AM CST

Finally, a picture of our new little boy!!! This was taken a week before his surgery. Thank you to Mary Kay for putting up the picture.

With today's journal I ask you to please stop by and say a prayer for our friend CAM. I have had the great pleasure of knowing Cameron's wonderful family for over three years. He is just the sweetest little boy. I am so sad to say that Cameron is getting ready to make his journey to Heaven. His mommy and daddy could use some prayers for peace and little Cameron could use some prayers for a pain free time on this Earth. Please take the time to visit them and leave them a guesbook entry letting them know that you stopped by. ****Cam passed away April 2. Please take the time to leave a word for his parents****

With Love,
Susan

Thursday, March 23, 2006 12:17 AM CST

Wow, what a difference a few weeks make. We had a bit of a rough time when we first arrived home. I was SO scared I was going to hurt the baby and it made me incredibly nervous every time I touched him. Also, he screamed his little head off every time I tried to put him down...which was fine because I love holding him...but it made for rough sleeping and loud diaper changes. Mostly it broke my heart to hear him scream like that because I can only imagine how much his little head hurt. It is so hard to look at your little child and not know what he is feeling. How much does it hurt? What can you do to make him feel better? Is he scared? Basically questions that all parents have at one time or another about their little ones....just amplified by a thousand. I pray that I never have to feel that level of fear and helplessness again for this child or any other children we may (hopefully) be blessed with in the future. Between what Jake had to go through on this earth and now Colton....I pray....no more.

Thankfully that is all in the past and he is back to his normal happy self. There is still a very large, soft area on his head where they removed the bone and it has not yet grown. That area still scares me to death. When I hold him in my arms I love so much to kiss the top of his little head and each time I do it takes my breath away for a split second because there is no bone there. The doctors say the bone will grow back within 3-4 months after surgery. I just keep reminding myself...gentle kisses!

As far as cuteness goes....Master Colton is as cute as ever. Actually, I would not have thought it possible but he is even CUTER than he was before the surgery. :) (okay, no more gushing) It is so amazing that he looks like a completely different baby. The shape of his head is so different and continues to evolve every day. Also, the doctor did such and amazing job with the incision that if you did not know about the surgery you would probably not even notice that he had anything major done.

We are SO THANKFUL that the surgery is behind us and we can now hopefully get back to just enjoying our sweet, healthy little boy.

With Love,
Susan

Sunday, March 5, 2006 7:59 AM CST

Yeah!!!! This update means that I am sitting at our HOME computer updating the site about how our little one is doing. He is recovering well and feeling much better. The surgery and recovery lasted about 3 hours after which he stayed in PICU. The day in PICU was a quite rough and Colton’s heart rate was extremely elevated (180-230), his blood pressure and oxygen were low and he was very pale. Mark and I were scared to death and it was finally decided that Colt needed a blood transfusion. Daddy, Aunt Carol and Grandma had all donated blood in advance “just in case” and as my Father-in-Law says…we will be monitoring his personality closely to see whose blood he was given. Colt did so much better following the transfusion.

We stayed in a regular room one more night and were released late yesterday afternoon. Before we left they discovered that Colt had a double ear infection and we were given an antibiotic to continue at home. We were very excited to bust out of there and could not wait to get home….however, about an hour into the longest 3 hour drive ever…..Colton was screaming, Mommy was covered in vomit (Colton’s not Mommy’s) and we came to the conclusion that we had perhaps been released a bit prematurely. I placed a panicked call to the neurosurgery dept. and they said the think the upset was due to the antibiotic and to take him off of it and see how he does. We did and he has not vomited since. We are very thankful to be home in our own beds with no middle of the night poking and prodding.

Colton has a very large incicion that goes from the front of his head to the base of his skull and it takes my breath away each time I see it. He is still quite swollen but it is not nearly as bad as it was in the hospital. At one point he was so swollen that he could not open one of his eyes. We are so thankful that the surgery is behind is and we pray that Colton continues to heal well and feel well. Thank you for all of your prayers and well wishes. It was so nice to have such positive messages to read during our stay in Miami. I am still emotional over the beautiful prayer requests that Julianna and Cheyenne' Daddies wrote about us on their websites. They are such very speical people.

With Love,
Susan, Mark, Colton, Brother Bear and La La Kitty (Jake loved his kitty so much and it looks like the trend is continuing…Colton gives the biggest smiles whenever she greets him)

Tuesday, February 21, 2006 12:55 AM CST

Well, it looks like we are going to be using the caringbridge site for it's original purpose once again...hopefully it will only be for a brief period of time. Thankfully our sweet new baby does not have cancer ....but, Little Colt does need to have a surgery at the end of this month.

What Colt has is called sagittal craniosynostosis. Craniosynostosis is a rare skull defect that occurs when the sutures fuse prematurely before birth. In a "normal" infant skulll, there are four sutures which remain open until around age 2. These open sutures (or soft spots) allow for skull growth and brain development. Little Colt's sagittal suture closed prematurely, before he was born. Because of this they need to be separated surgically by removing a portion of his skull. So, we are once again making the dreaded drive to the Children's Hospital for visits to the Neurosurgery Department. We have already been down for our consultation and scans. Of course it was a complete nightmare being down there again and I just wanted to take Colton and run away. Our sweet little 11 week old baby...we are in total shock. I am scared to death and every time I look into his sweet little loving eyes my heart just aches. I can not believe that he has to go through this.


In every other way Colt is doing very well. He is so sweet and growing by leaps and bounds. At his 2 month appointment he was a whopping 13 pounds 4 ounces and had grown to 25 inches. He is rolling over like a champ and his coos and smiles just melt my heart.

As always, your prayers and well wishes mean so much to us.

With Love,
Susan

Thursday, January 5, 2006 3:24 AM CST

I hope that everyone has a happy, healthy 2006.

I wanted to update and let you know that Colton is doing very well. He continued to lose weight for a couple of weeks until it was finally discovered that I was not producing enough milk to sustain him so we have had to supplement with formula. He is now doing so much better and is chunking up just like he is supposed to. I still can not believe that we finally have a new little boy in our lives. I think I am still in shock.
I miss Jake and my Mom so much and it makes me very sad because I wish with all my heart that Colton could have met them both. However, at the same time I am so excited to be a mommy again and I know that Jake and his Grandma are dancing and celebrating in Heaven.

It has been so wonderful to finally meet Colton and his arrival Thanksgiving weekend helped ease the "Holiday pain" somewhat this year. The Holidays are so hard without Jake but this year thankfully we were so sleep deprived we were able to just ignore them. Did I just say that I was thankful to be sleep deprived? Mark might disagree with me at 3 am (notice the time on the latest update) but it really helped the holidays just fly by. We were very thankful that Mark's parents and sister's family came for a while to visit and help. It really did help us get adjusted to having a new baby. I had forgotten how difficult it could be at times to get things done with a new baby in the house.


I know I promised a picture but it has been so long since I played with pictures on the computer that I am emparassed to admit that I have actually forgotten how. Hopefully my friend Mary Kay will help me....hint, hint.

I must sign off...Colton is "calling."

With Love,
Susan, Mark, Colton and Big Brother Jakey Bear

Friday, December 9, 2005 10:49 AM CST

Finally, an update. I can not believe it has been over a year since I last updated the Journal. I want to say "Thank You" to everyone who continues to visit and check on us. We always check the guestbook and the entries still mean so much to us.

Why have I not updated? Basically it has just very difficult for me to do so. We still miss Jake so much and to sit down and journal about our grief just seems to make it a little worse somehow. It has been such a long and difficult year and a half. Not only have we been missing Jake but my Mom passed away March 26th and I have been missing her as well. Anyway, my intention was to wait to make an update when we had some good news to report...So here I am updating with absolutely fabulous news...

Jakey Bear has a little brother. COLTON JAKE GRIFFIN. He was born November 28th at 12:37pm. He weighed 8lbs. 10oz and was 21 inches long. He is absolutely perfect and it feels so wonderful to have a child in our home again. Mark and I have missed being parents so much and this sweet little boy is such a blessing. Our hearts are finally happy again.

Please keep Colton in your prayers. He has not been gaining weight like he is supposed to (he has actually lost a pound) and the doctors are a little concerned so please pray that he begins to gain weight soon/immediately. We will add a photo as soon as we get a chance. Hopefully, after the weekend.

With Love,
Susan, Mark and Colton.....and of course Jakey Bear also

Saturday, September 25, 2004 2:21 PM CDT

A few days ago my plan was to make a post about how I am feeling now that it has almost been six months since Jakey Bear went to heaven. Six months...we miss him so much. Instead I am here writing in disbelief, physically and mentally exhausted from not only missing Our Bear, but from preparing for yet another approaching Hurricane as well. I can not believe that it is likely that by tonight we will again be without power and water for days to come. In fact, they just said on the news that they expect 90 percent of our area to be without power for about 3 weeks this time due to the strength of the storm and resources being "stretched thin." It is completely unbelievable to be directly hit by two Hurricanes within 3 weeks of one another. Yesterday I was at Walgreens shopping and a woman ahead of me in line actually told me that I was "lucky" that I did not have any children because it was so difficult to be without power for 2 weeks with children at home. Sigh. Of course she did not know that my child had just died a few months ago and I did not tell her that I am far from "lucky". I just nodded politely and told her I am sure it has been very difficult for her. Anyway, it should be pretty wet in our house by tomorrow due to the fact that the builders have not yet fixed the damage from the last storm .... so, when it rains outside it also rains in our laundry room. Hopefully the damage will be minimal, everyone will stay safe, and I will be able to update tomorrow. I actually do have an update that I want to make that has nothing to do with storms but I am just too tired right now to write it so I will do it as soon as we get power back.



Blessings,
Susan

Monday, September 13, 2004 11:52 AM CDT

I have lived in Florida basically my entire life and have been through numerous Hurricanes throughout the years without any “major effects.” However, something told me that this storm (Hurricane Frances) would most likely be a little different for us. I think this knowledge finally hit me two or three days before the storm made landfall here in Stuart. My first inkling that things could get bad here was when I went to the bank to get some money to have “just in case” and the teller told me that they only had a very limited amount of cash left and what they did have was only in five and one dollar bills. They closed their doors an hour later and did not open for a week. The second sign was when I went to the grocery store to get some "non-perishable items" and someone stole the peanut butter and bread from my cart because there was none left on the shelves. I am used to guarding my purse while at the grocery store....but peanut butter? That was just the start of the craziness that was our week.

Thankfully we survived the storm unhurt. However, I am also thankful that I took the time to protect all of our pictures and Jakey Bear treasures in Zip-lock baggies and Rubbermaid containers because we did have some pretty major leaking in our house. The ceiling in our laundry room collapsed and several of our other rooms leaked but nothing important was harmed. The worst thing was that we did not have electricity, running water, or phones (home or cell) for a week following the storm. It was HOT, we were very unhappy and a little stinky....okay, more than a little stinky. :) I never been so appreciative of a hot shower in my life.

On a positive note, because of the approaching storm we were able to meet and get to know many of our neighbors. We had just moved into this house 2 months before Jakey Bear died and as a result we have not really had the energy to get to know any of our neighbors other than the occasional wave hello/goodbye. However, in preparing for the approaching storm and talking about how crummy and hot it was afterward, we really got to know many of them. Most were very nice and said they had wanted to say “hi” many times but were too uncomfortable to speak to us because of what we went through with Jakey Bear. They explained that they had no idea what to say to us .... so they just did not say anything. They all seemed truly grateful for the opportunity to finally talk, express their sympathies, and just get to know us as neighbors. I completely understand their discomfort. I think it is our responsibility to reach out and make people feel comfortable being around us.


Blessings,
Susan

Friday, September 3, 2004 5:03 PM CDT

Well, I figured I would update today while we still have electricity to do so. We have had quite a busy few days around here trying to get things all set up and as safe as can be for Hurricane Frances. The forecasts pretty consistently seem to say that that the storm should make landfall somewhere between Palm Beach and Vero Beach. And....since our house is in Martin County/Stuart which is almost exactly in the middle of those two places it is not looking very good for us. However, these types of storms change course and strength all the time so no one really knows what will happen with them or where they will end up until it is over. I must say...pretty much everyone on the east coast of Florida is very scared. The gas stations ran out of gas yesterday, the banks ran out of money and I do not think you can find a battery in the whole state of Florida at this point. Mark has been working his tushy off not only putting up every one of our shutters and getting our yard ready....he has been helping several of our neighbors as well.

As for me, I have been taking care of the "indoors" so to speak. My biggest and most difficult chore has been to go through all of our "Jake Stuff" and get it as secure as possible. What an emotional challenge. I have not had the strength to look at most of that type of thing since Jake died. The thought of sitting down and looking at all of it has just been too much. However, the thought of losing it is worse. So, with a storm like this one possibly heading right for our house I have been going through each and every picture, video, dvd, arts and craft project and remembrance we have. I have been putting them in zip lock baggies which are then placed in Rubbermaid containers to protect them. It was such an overwhelming thing to go through all of those boxes but I did it and I actually had many smiles along with my tears. I had many wonderful moments remembering times that I had not thought of in quite a long while. It was very cathartic in a way.

Once again I am amazed at how our priorities have changed. In the past I would have prayed that our families are safe and that our home survives as well. Now I think....keep everyone safe but take my home....just please spare the tissue paper flower that Jake made for me on my last Birthday. Take my jewelry, clothing, car etc. but spare the hand written notes that Jake made for us. Spare our truly irreplaceable valuables.

My prayers for safety to everyone who is threatened by this storm.


Blessings,
Susan

Monday, August 9, 2004 3:04 PM CDT

Yesterday was 4 months since the last time we got to hold our Jakey Bear in our arms and give him hugs and kisses. 4 months that often seem to be an eternity. We miss him so much. We have good days and bad days..... I write that sentence and I am struck by how much our definition of a good day has really changed. I guess what I should say is that we have some days that hurt less than others. This past week has been especially difficult at times because the children are getting ready to go back to school. Today was the first day of school for our area and it would have been Jakey Bear's first day of Kindergarten. I have broken down so many times lately in Wal-Mart and Target as I walk past the "school supply" aisle that I am sure I now hear the employees point at me and whisper something about that "crazy lady who cries every time she comes in here" as I walk through the door.

Now about my school....I had so many people asking about school and wishing me good luck...I said I was going to update after my mid-terms and ..... well, I have finals this week. (I know it has been two months since an update. This time I really do plan on updating more often!!) I was almost finished with my classwork for my doctorate in Psychology when Jake was diagnosed and I put that part of my life on hold to spend as much time as possible with him. So, it seemed like the natural thing to do....to go back and finish. However, right now it is so difficult to keep my mind on task and be in classes. I do not know what I am going to "do" but I know that school is not the right thing for me right now. Perhaps next semester.

Well....I should probably sign off for now....I have to leave to go take a final.


With Love,
Susan

PS One of my best friends Julie....recently posted a letter that was written to her by her sweet daughter MADDIE the week that she was diagnosed with a brain tumor. It is such a beautiful letter written by a beautiful girl (advance warning....have tissue handy). I love to read it and imagine that it is Jakey Bear saying to me everything he would have said/written to me if he was older. Thank You Maddie. After Maddie was diagnosed she always used to say that she was going to be in charge of a "kids camp" for all of the "little angels" she had gotten know if she ended up going to heaven. Sadly, she did go to Heaven a month after Jake. Since Jake is one of those sweet (and strong-willed) angels....I am sure she has her hands full with Jakey Bear aka "Big Jake" in camp!!!

Wednesday, June 9, 2004 3:13 PM CDT

Well....I just sat here and wrote a long update for the site, but by the time I went to add it...it was just gone and I have no idea what happened to it. So, the official update will just have to wait because I do not have the energy to write another one right now. :) I guess next time I will write it in Word and just transfer it...now I know why I have seen other caringbridge people recommend doing it that way! Too bad I did not listen.

Please continue to keep our "little friend" WILL and his parents Mary Kay and Todd in your prayers. Will has actually taken a helicopter ride to Miami Children's Hospital and is having surgery to correct his hydrocephalus today.

Another sweet girl, and protocel friend, who could use some encouragement is CHRISTY. In August of 2003 her family found out that her medulloblastoma has recurred, and this time it is in the brainstem. So, she and her family are "in the fight again". She has recently had a stem cell transplant which is hard, hard work.....so please.....keep her in your prayers and take the time to leave her a guestbook entry.


With Love,
Susan

PS I will try to update after my mid- terms are over. I am back in school and I have not had a mid-term since 1998. They are harder than I remember :)

Wednesday, May 26, 2004 9:34 PM CDT

In this journal I wanted to share something that a very special person did in Jake's honor that truly meant so much to Mark and me. On April 14, the day of Jake's Memorial, our friend Tom Lee gave a small speech at the State Capitol about our Jakey Bear. I have included a transcript of the speech that is in the Journal Of The Senate but it honestly does not do the moment justice. The video of it is so touching and something Mark and I will cherish forever. Watching the little slide show of pictures of Jake on the big screen and seeing our Little Bear have a moment of silence on the Senate floor is wonderful. Little Jakey Bear...Sigh...we miss him so much.

Sunday, May 9, 2004 9:58 AM CDT

Today is Mother’s Day and it is just over a month since our little Jakey Bear died. I must admit it seems like so much longer that he has been gone. I did not intentionally wait until this day to update .... it has just worked out that way. I have come here to read the guestbook entries and to look at Jakey Bear's face so many times over the past month and each time I intend to update but I don’t. I always end up reading some of my old journals, remembering how much fun I had with Jake and next thing I know....I am unable to update.

Another problem is that I no longer know what to write....I had never even thought about what to do with this site once there was no more "Jake News." To continue writing or not????? I guess you will have to just keep checking to see if I keep it up!! :)

I want to thank everyone for the love and support that has been given to us over the past months. Thank you to everyone who attended and assisted with Jake’s memorial. With everyone’s help it turned out beautifully. Thank you for all the beautiful flowers, the food, the cards, the phone calls etc. Thank you also for all the amazing gifts that have been given in Jake’s memory….the outpouring of love and generosity has been simply overwhelming.

Now....How are we doing?? Remarkably well I suppose. Like my girlfriend Beth who lost her little girl to a diffuse pontine glioma always says.... “I expected to be in a straightjacket so anything less and I figure I am doing pretty well.” Honestly we are far from the expected straightjacket.....How can I use words to adequately explain the intensity of emotions we have gone through over the past 30 months? I can't....it is so difficult to explain but Mark and I spent every moment since Jake was diagnosed absolutely scared to death for our son and his future…we are not terrified for Jake any more. Now we miss him.

In this journal I would like to include something that Mark wrote for Jake that he read at the Memorial.

A few words about Jake – Mark Griffin

Susan and I want to thank you for being here tonight for Jake and for our family and for the incredible kindness, support and for all of the prayers that we have received throughout this journey.

As most of you know Jake was diagnosed with a brainstem tumor exactly one week before his third birthday. At the time Jake was given a grave prognosis of about 6-9 months and was emergently started on radiation therapy because of the large size of his tumor. On the way to his very first treatment in Miami, just before dawn, we were greeted as we turned into the hospital parking lot by one of the brightest shooting stars either of us had ever seen. We hoped that this was a sign that all of our doctors were wrong and that Jake was going to beat this dreaded type of tumor. Jake fought courageously for almost 2 ½ years and in the process not only survived but took on life with great vigor and enthusiasm.

Jake loved playing with trains, especially Thomas the tank engine, he loved playing with his friends, he enjoyed riding his big wheel, swimming, reading books, trips to the playground and he particularly loved going to preschool.

Jake’s world was playful, trusting and secure. His best friend was whomever he was playing with at the time. He could fill a room with his presence and his laughter. His giggles were contagious. His teasing was good-natured and light hearted. When he laughed with you it was pure love.

Looking back we realize now that the shooting star that we saw that morning was not a sign that Jake would be granted a miraculous survival as we had so desperately hoped, but instead it serves as the perfect analogy of Jake’s life. Constrained only by time, Jake flashed brilliantly. Infused with enthusiasm, love and courage he burned hot and radiantly. He left a shimmering trail of light. Jake showed those around him the true meaning of love and hope.

We will miss Jake’s precious and tenacious spirit. We will miss his beautiful smile. We will miss his warm hugs. We will miss his mischievous ways. In short, we will miss everything about our precious “Jakey Bear”. Our hearts are completely broken, but our sadness is not for him. He is finally whole. Our sadness is for ourselves, because we have to figure out how we’re supposed to go on living without him. His absence hurts us so much because his presence brought us so much joy. We will cherish forever the wonderful memories that we have of Jake that seem too numerous to have been created in only five short years.

Goodnight Jake Austin. Thank you for loving us so tenderly and completely, and for blessing our lives so immeasurably. We will see you again sweet boy, and that assurance brings comfort and peace to our broken hearts.

With Love,
Susan and Mark

Thursday, April 8, 2004 8:36 AM CDT

I do not even really know how to start this post ... With this journal entry I want to tell a story we read one time that really touched us. It is an ancient story about a rabbi, his wife and their twin boys who were very loved by their parents. The boys died while the rabbi was away on a trip and knowing how deeply the man loved his children the wife decided not to tell him until he returned and had fortified himself with a nice meal. Throughout the evening the man asked for his sons repeatedly and whenever he asked where the boys were the wife would just reply “They are away from home now.”

After the meal the wife asked her husband to help her with a problem she had. She asked him “if you were lent two precious jewels and told you were allowed to enjoy them as long as they were in your keeping, would you be able to argue when the lender asked for their return?” Of course the husband answered “certainly not!”

After his answer the wife led her husband to the bedroom where the two boys lay and said, “God wanted his jewels back.”

It is with this story and a completely broken heart that we let you know that God wanted his most precious jewel back. Jake Austin Griffin died at home at 6:04 a.m. on April 8, 2004 in the loving arms of his parents.

Our lives will never be the same for losing Jake, but we are so blessed for having known him and are so thankful to God for the opportunity to care for him for the last five and a half years.


Visitation: April 14th, 2004 4-7pm
Memorial Service to follow at 7pm
Aycock Funeral Home
1112 Military Trail
Jupiter, FL 33458
561-746-5124

The following three organizations have been a blessing and have made a true positive difference in our lives throughout this journey. Memorial Gifts may be made to:

The Connor Moran Children’s Cancer Foundation 825 US Hwy. One, Ste 320, Jupiter, FL 33477

GIVING KIDS THE WORLD 210 South Bass Road Kissimmee, FL 34746 (407) 396-1114 and

CARINGBRIDGE

Monday, April 5, 2004 8:29 PM CDT

I look at the date on our last update and I realize it has been several weeks since we last updated with any news. There are really 2 reasons for that... 1) I just do not get online much right now and 2) there is not much new information to pass on. We are still spending most of our days just holding Jake in our arms telling him how much we love him. He is basically paralyzed from the tip of his toes to the top of his head. He is following a normal schedule and is awake all day and sleeping all night. We spend our time going for walks around our neighborhood with the wheelchair, swinging in the porch swing outside on the patio, and just kissing and hugging our bear. Jake has not wanted to see any of his friends for the past couple of months. Seeing them and not being able to talk to them and play with them upset him more than it made him happy so we just basically spend time with family.

I have had many people write me on the side and ask why Jake’s symptoms are so bad. Why can’t he talk or communicate? Why can’t he walk or move? It is because Jake’s problems are with his brainstem and in particular the pons area which is the most central part…the brainstem controls the movement of basically every muscle in your body including your face and eyes as well as respiration and heart rate. It is just an amazing and wonderful little (the size of your thumb) area of your brain as long as things are working well there. Damage to that area is catastrophic no matter what it is caused by (radiation or tumor or both).

Thank you to everyone who has continued to support us during this time. Thank you to Zachary Finestone for the delicious meal you had your Dad drop of to us! You are an awesome cook! I should probably thank your Mom Rebecca as well:) And thank you also to Senator Tom Lee and his amazingly caring and thoughtful girlfriend Aunt Heather. You guys have been and continue to be such an amazing source of support and we love you for it.

I honestly do not really have the energy to write much more but I wanted to update everyone about how Jake is doing. Thank you for checking on him and continuing to keep him (and his Mommy and Daddy) in your prayers.

With Love,
Susan and Mark

Thursday, March 18, 2004 4:55 PM CST

Thank you so much to everyone for the wonderful guestbook messages. I want everyone to know that not only do Mark, Jake and I appreciate them....our entire family appreciates them as well. Our families often tell me how much they help them cope as well. Thank you.

Thank you also to everyone who has been so supportive throughout this crummy time. I want to again give my stupendously wonderful girlfriends many, many thanks and let them know how much we love and appreciate them. You guys are awesome and I do not know what we would do without you all by our side. One thing I have learned throughout the past 28 months is that people are often so uncomfortable with "not knowing what to say" that they do not say anything and do not call or come around because they mistakenly think we need "space". Thank you to all of our friends for NOT giving us space :) (unless we come out and ask for it) and for overcoming their discomfort and fear of not knowing what to say....and just being there. You guys let us cry when we need to and just as importantly you encourage us to laugh as well (because we need that also) and we love you for it.

Now, how is Jake? He is an extremely tired pup. He is no longer able to speak which absolutely breaks my heart more than anything…anyone who knows Jake knows that he LOVES to talk....so the loss of that ability has been horrible. In fact, two of his favorite phrases have always been...."I just want to tell you one more thing" and "mommy/daddy don't ignore me when I am telling you something." My poor little chatterbox. So now we just hold him and do the talking and make him listen to us :) He is still eating and drinking with effort but he is sleeping most of the day away. He is hibernating. Sigh.

Thank you for checking in on Our Bear and keeping him in your thoughts and prayers.

Much Love,
Susan and Mark Griffin

Thursday, March 11, 2004 1:34 AM CST

Yes we have added music! Our friend was so nice and took the time to put the music on the site for us. (Thank You Mary Kay) I am embarassed to admit that I tinkered around with trying to upload music for about 6 months and was unable to do it....I asked Mary Kay about it exactly 6 hours ago and here it is! Either she is very computer literate or I am very computer illiterate. Probably both are actually true.

Now, about the song....I know everyone hearing it is thinking "What is this song? They have never had a song." I guess Mark and I have just never found one that fit...until now. Mark and I like it and think it is very touching. Part of the reason we like it is because it also has a very touching story behind it. It was up for a Grammy this year and was written by Warren Zevon. He himself was diagnosed with terminal cancer. After he was diagnosed he wrote the entire album on which this song is a track...sadly he died from the disease a few months later. Another reason we thought it was appropriate is because Jake's little engine is running out of steam here on this earth... so, sadly it is fitting for our Bear.

You are never going to believe it but I have ANOTHER fourtune cookie story. (For those of you not following our story...sorry no rehashing...you are going to have to read the history) Since the last cookies turned out to be true on both counts (our "pleasant news" was that Jake's tumor was stable and my "empty cookie" was the necrosis) I feel like sharing this one as well. Last night we had my Mom over for Chinese food and Mark handed out the cookies to each of us. He specifically held up one cookie and said to us all that this cookie was for Jake and he put it in the middle of the table. At the end of the meal we each read our fortunes. They were all pretty normal and boring as far as fortune cookies go.

Mark's said "A financial investment will yield returns beyond your hopes."

My Mom's said "You will win success in whatever you adopt."

Mine said "You will soon enjoy a positive reward."

Pretty normal right? Of course the one that touched our hearts was Jake's. It reads as follows...

"You are heading to a land of sunshine....."

It is 2 am and I am tired so I must say goodnight.


With Love,
Susan, Mark, Jake and La La Kitty

Sunday, March 7, 2004 10:10 AM CST

Thank Goodness we are finally all moved into our new house. I would not say we are settled but we are moved. Mark's parents came and stayed with us for a few days and very kindly helped us move. Grandpa's back must still be aching. We were supposed to be in by September 2003 but I know that anyone who has ever built a house knows how that is. My recommendation to everyone...buy resale. We are just thankful that we finally made it.

How is Jake doing? Sadly, Jake is feeling very bad these days and it just breaks my heart. These children...it is so unfair what they have to go through. The tumor is stable (as always...thanks to God and Protocel...we stopped the vp-16 after less than 2 cycles) but Jake is in a very, very bad place right now, physically. Necrosis, necrosis, necrosis. I used to have nightmares about diffuse pontine gliomas...now I ALSO have to have nightmares about necrosis. Jake's poor little brainstem has too much going on with the huge glioma to be able to handle anything else. I am sad to say that all of those doctors who 28 months ago refused to answer our questions about the long term effects of radiation because it was a "100 percent guarantee that Jake will never make it long enough for it to be an issue" were all wrong. Oh well. I guess if a doctor has to be completely wrong about something let it be that they consider you to be a miracle for surviving. Sigh. Diffuse pontine gliomas are rare...surviving them this long is REALLY rare, necrosis is rare....my boy is all about defying statistics. Sometimes it seems like if there is NO CHANCE it will happen....it will happen to us. Once again "it is what it is" and we are trying to make the best of what "Big Jake" been handed in life. I have to sign off because Jake is calling for me....


Thank You for checking in on my Sweet Bear and keeping him in your prayers.

With Love,
Susan, Mark, Jake and La La Kitty

Sunday, February 29, 2004 9:00 PM CST

Dear friends-

Hi, this is CHRIS's mom Cherryl. Susan asked if I could update everyone on how Jake is doing, since they just moved into their new home this weekend and her computer is currently packed away.

As many of you know, Jake has not been feeling well lately. He had an MRI recently, as Mark and Susan weren't sure what was causing Jake's return of symptoms and wanted to make sure that hydrocephalus wasn't what was causing Jakes sleepiness and overall icky feeling. The official report from the radiologist says that the "huge pontine mass is stable but has changes in signal intensity....most likely due to necrosis. (radiation necrosis?)"

Although it is wonderful news that Jake's tumor is stable, radiation necrosis can be as bad as tumor growth, and can even be fatal, and is likely causing the problems he has been experiencing for the last several months. I would like to ask everyone to please keep Jake and his family in your thoughts and prayers. This beautiful little boy has fought so hard to beat this beast of a tumor to now be having to struggle with the possible effects of radiation damage.

Jake honey, we love you and are praying everyday that God will bless you with another miracle.

And to my dear friend Susan. You and Mark are doing everything humanly possible to give Jakey Bear the best chance at beating this and he knows that and loves you both so very much. Hang in there and know that I am always here for you.

Love-
Cherryl

Sunday, February 1, 2004 2:58 PM CST

Once again it has been an extended time between journal entries and I apologize to all of our friends who have been calling and calling and not getting calls back. (Lisa, Tracie, Heather, Shannon etc. etc.) I am so sorry but we have been busy, busy, busy. Jake is in physical therapy 3 times a week, occupational therapy 3 times a week, at The Upledger Institute 2-3 times a week and we see an oncologist 1 time a week. Now I know that some of you are thinking to yourself...."what is she talking about, busy? That is not busy." Well, we are packing to move to a new house too.

How is Jake doing? Well….that honestly depends upon the day. He has good days and bad days; days when he feels good and days when he feels like…hummm…doo doo would best describe it. He has days when he walks and days when he does not walk. It is basically a completely fluid day to day thing. (insert SIGH here) My poor baby...he really deserves better.

I have to say that I have come to the decision that I will not be posting as often; I just do not have the time like I used to. Plus, I honestly kind of have writers block. Not really writers block…I actually write all the time. The problem is that most of the postings I write are kind of sad and introspective …so I delete them. Posting that type of thinking does not do anyone any good…not me when I write them and not my friends and family when they read them. I honestly try so hard to not get dragged down in that type of thinking simply because it is no good for Jake to have a completely depressed mommy.

One quick story…the other day Mark and I went to PF Changs for lunch. (it was delicious by the way!!) Of course, at the end of the meal they brought us each a fortune cookie. Well…my cookie was empty…no fortune. After I got over my initial thought of “great, story of my life” I asked for a replacement cookie. The next fortune said “you will hear very pleasant news.” I will take pleasent news over no fortune any day. I just wish I could shake the feeling that the empty cookie was my "real" cookie so to speak. (See what I mean...look at me rattling on and on about fortune cookies! It is time for me to "step away from my keyboard." :) )

Last thing…Jake is asking me to write something that he thinks is very funny…he would like me to let everyone know that his first word he ever said was at 10 months old…it was “Ball.” His second word was “Daddy.” And…his third word was “no biting.” (he was a bit of a little chomper when he was younger so I guess he heard that word quite a bit.)He also wants to tell Uncle Floyd he says hello and he can not wait to play trains with you again.

Once again, thank you for keeping Jake in your prayers.

With Love,
Susan, Mark, Jake and La La kitty

Monday, January 19, 2004 11:38 AM CST

We are so sad that Aunt Lisa had to go home this morning...back to Maryland. When she got there and it was 2 degrees she was pretty sad too! he he We really miss her so much already. It was so wonderful to have her here with us and it meant so much to us. Especially considering that she just recently became "Dr. Aunt Lisa" and she should have been home studying for her licensing exam which is in 4 weeks!!! Good luck Lisa!! You are going do fine..no you are going to do GREAT!...I just know it.

Tuesday, January 13, 2004 12:13 AM CST

****Counting down the hours until another wonderful visit from Aunt Lisa!!! YEAH she will be here on Wednesday and stay until Sunday!****

Jake is still feeling well. I have to warn you....this entry is going to be a little bit different than usual. Everyone knows that we have chosen Protocel as a treatment for Jake’s brain tumor. Wonderful it is…it is also very difficult. Difficult because doctors will not and/or can not help us use it as a treatment. So we have this product that is doing "something" to our childs cancer and we are doing it all alone based on completely anectdotal evidence about what is the proper dose and formula. We just have to figure it out on our own. This is mildly stressful to say the least. That being said…I have noticed that my friend Cheryl is able to make a lot of her Protocel decisions by “processing” information for herself on her son CHRIS's website. So I am going to use this entry to do the same. Advanced warning…this could get boring!! However, maybe I will come up with an answer at the end!! (not likely)

When we found Protocel (2 years ago) they only made the JVS 23 and we were told to give it 1/8 tsp (jake was 30 lbs) every four hours throughout the day like clock work with the 11pm dose being ½ teaspoon. We gave it every four hours around the clock. 7, 11, 3, 7, 11, 3... we even carried a small alarm clock withus at all times as a reminder. It was THE most important thing in our lives.... Protocel was our hope. So we gave it and never stopped. And it worked wonderfully.

Soon after...Renewal and Wellness started carrying the EJS 50 so we switched to it. (we were told it was the stronger formula and you need less.) At this point we had used up one bottle of the 23. With the switch to the EJS-50 we gave it every six hours. (7,1,7,1) We started at 1/8 tsp (Jake was about 35-45 lbs) and it seemed MUCH stronger because Jake again had a very strong protocel funk period immediately following the start of the 50. He was dizzy, tired etc. Over the months we slowly worked our way up to 1/4 tsp. Jake was on that formula for well over a year. (Now keep in mind that Jake was doing so well...we should have just left it all alone but we just got scared even though he was doing well.) In april 2003 we met a Naturopathic Doctor named Dr. John and he told us we should switch to the 23 formula and give it only 4 times a day...we began to do it this way in June 2003. Jake started showing tumor symptoms within a month and a half of the switch. The early symptoms were subtle but at the same time they were different than they ever were on Protocel before. They were pretty strong tumor symptoms. We finally switched back to the 50 in mid November.

What does all this mean? Who knows? It could mean one of several things.

1) It has nothing at all to do with Protocel and it was just time for the tumor to return.
OR…
2)Our growth could have had something to do with the switch.


So, it was not really just that Jake’s tumor grew through our treatment….We made a formula switch and dropped it a dose and then the tumor grew. So we are making an attempt to go back to what was working. After we switched back to the 50 two months ago Jake went through another “Protocel funk” and he has shown signs that it is working again. He is showing signs of lysing and for the time being he appears to have stabilized. He had a rather quick downslide throughout November and December which appears to have halted/slowed for the time being. Time will tell.

We fully realize that it is in God’s hands but please keep Jake in your prayers that switching back to the other formula will work for Jake. Jake was granted the Miracle of time and quality of life once before…Is it too much to ask for another Miracle? We are Realistic yet hopeful at the same time.


With Love,
Susan

Friday, January 9, 2004 8:04 AM CST

Finally an update instead of that brief "all is stable" junk I had up!!! Mark told me that I HAD to update today because there were some people beginning to get belligerent in our guestbook about the lack of information. (Tracey!) Anyway, I have finally figured out the problem about why I can not update as easily as before....Jake is back in our bed and the computer is in our room so I no longer get computer time during naps and after he goes to sleep. I don't know if it is true or not but Jake says that our bed is just SO MUCH MORE COMFORTABLE than that rock hard slab of granite in his room that we try to make him sleep on.

Jake is doing well. He is still very stiff on his left side (leg and arm) but he is back to walking without assistance around the house. For a few days there he was only crawling or yelling out to us to “take him to the playroom” so we are glad to see him walking again. He is no longer choking on food and water like he was in October and November either. Most importantly, I would still say that he is feeling well. He is laughing, chatting and telling jokes just like “Jake.”

If you have time please stop by and say a prayer for our little friend EMILY. She has been through so much lately (many complications for her brain tumor) and her family could use the support.

With Love,
Susan

Wednesday, December 31, 2003 9:18 AM CST

This is one of those times where no news is good news (or at least not bad news) I will update later but I have had so many people mailing me privately to see how Jake is doing I wanted to let everyone know that everthing seems to be stable with no real changes.

I will update later.

Love to all and HEALTHY NEW YEAR!

Sunday, December 21, 2003 10:42 AM CST

“Good Morning Mommy and Daddy. It’s Sunday! Happy Sunday Mommy!” Jake loves to keep track of the days of the week and that is the wonderful way Mark and I are awakened every morning by Jake. Needless to say this helps us get our day started off beautifully.

We are absolutely exhausted as this week comes to an end. My goodness we are back in the swing of “brain tumor life” so to speak. We have doctors visits all the time…insurance issues again (I will not even get started on this issue right now). Jake is handling it all like a trooper. I am happy to say that he is feeling MUCH better than he did very recently. He is still symptomatic on his left side and “mr. left” as he likes to call his left hand is not cooperating with him when he asks but he obviously FEELS better than he did. I must admit that 2 weeks ago I was very worried about him because he was so very tired and complained of “feeling terrible all over his body” quite often. Who knows what that was all about…was it the new addition of the VP-16, the cancer, or The Protocel (3rd week on 50)? Again who knows…I am just glad he feels better. Thankfully he is back to being Jake and is out of bed all day and playing and laughing again instead of sleeping.

Here in the Griffin household we are starting to get very excited about December 25th. We are busy making cookies for Santa and a Birthday Card for Jesus. We are SO thankful that Jake is here to celebrate yet another Christmas with us. I have to admit that I was a little worried because we have done most of our shopping online this year and not much had come in the mail but just recently things have started arriving (thank goodness!!). A HUGE THANK YOU to Teri Moran who delivered a big bag full of goodies for Jake and to our Cousin Caroline (who lives in China) who sent a wonderful package.

The other exciting news is that we have BIG plans this Tuesday with our friend DYLAN. Thank you so much to his Mommy Sharon for including us. It is a surprise for the boys so I have promised that I will not ruin it by posting it but I just know they will love it!!

Please take a moment to say a prayer for all children suffering with cancer. It has been a horribly rough month for many of our caringbridge friends. There have been too many recurrences and too many deaths recently. It is tragic that so many parents are without their children during this holiday season.

Thank you so much for your continued prayers and support for our little "monkey" and blessings to you all during this Holiday season.


With Love,
Susan

PS Did I mention that is is FREEZING here in South Florida? It has been around 50 degrees!! Now I know that does not sound cold to many of you "northerners" but remember...we do not have any warm clothes down here!!!

Monday, December 15, 2003 12:36 AM CST

Boo Hoo! We are SO sad that Lisa had to leave and go back home. She has only been gone 24 hours and we are all missing her so much already. We love you and miss you Lisa!

Jake and I have been doing something very fun lately...we have been going to one of those places where you paint your own pottery and making lots and lots of different things. That is what is in the new homepage photo. We love it...we really enjoy creating our works of art. Jake draws on plates and writes his name etc. Then I take paint and paint over what he drew with pencil exactly as he did it. They are beautiful. We had planned on giving some of these as gifts for Christmas...BUT...we have all decided that we can not part with any of them. Oh well. I certainly hope that everyone understands that we will NOT be having the time to shop for presents this year.

Medically Jake is doing okay. I am sad to say that he was certainly much better before we started chemo. It was an overnight change. He is much more tired now and he complains that his "tummy has a headache" quite often. Zofran helps a bit with that. He has no energy...poor thing. He is still walking and talking and getting around but we had to get a wheelchair because he can not walk well enough to get around the hospital when we go for our numerous doctors visits. The chemo holding back the tumor even a little bit to help the Protocel work is still our only hope. We switched formulas exactly a month ago.

One of Mark’s friends recently found out about Jake and they are paying for Jake to have treatment at The Upledger Institute. It is wonderful of them. It is called craino-sacral therapy and they swear by it…… it has helped their entire family with many different concerns. I must admit I was a little unsure of it before we went but Jake did very well with it and it certainly can not hurt. He actually seemed to enjoy it and if it even makes Jake feel a little bit better it is well worth it. Interestingly, as we were checking out and saying our goodbyes to Dr. Upledger we noticed one of Jake’s oncologists in the waiting room.

Thanks again for stopping by to check on Jakey Bear. Also, please take the time to congratulate Zachary on his most recent test results. He is “almost” cancer free (Thanks to Protocel) and his mom and dad are still in shock about it.

Still praying, still hoping, still "swimming" like Dorey, still laughing.

Blessings,
Susan

Friday, December 12, 2003 8:06 AM CST

We are having the most wonderful time with Aunt Lisa! Jake loves to go look at Christmas lights and decorations so we have been going on little adventures every night when it gets dark to find lighted neighborhoods. I must say that some people here in Florida get VERY into their Christmas lights. As far as the Griffin's go.....we have not gotten many decorations out because we are still living in the little house we are renting until our house we are building is finished. SO....most of our Christmas "stuff" is in storage units until we move. We have our tree up though and it is beautiful. Thankfully, we are expected to be in our new house by the first of the new year. We can not wait.

We went to the doctor yesterday and while we were there they had a person helping the kids paint on christmas tree ornaments so we have 2 beautiful new christmas ornaments for our tree that were made by Jake. We also had the pleasure of meeting the most amazing guy while we were in the doctor's waiting room... DAVID is another of our Protocel friends who is fighting a GBM brain tumor. He was very funny and kept us entertained the whole time we were in the waiting room.

For those of you who asked for an address for Jake...
Jake Griffin
220 Marlberry Circle
Jupiter, Fl 33458

Blessings to all,

The Griffin's (Mark, Susan, Jake, and La La Kitty)

Wednesday, December 10, 2003 7:58 AM CST

Well, we had our appointment with the oncologist yesterday and it went as well as expected. We remembered to ask... most... of our questions and we still don't know really know what to do. It is not like they are giving us any hope. I again expressed how upset I am that it appears as if Protocel is not working as well for us anymore....usually when it works it continues to work. The doctor again gave his pat answer that he gives whenever I try to ask questions about Protocel. "Again, we don't know anything about the alternative you have chosen and we have no scientific evidence about how it works....all we know is that we have patients who are using it who are doing better than would be expected if they were using conventional medicine alone." He also again went on about how “unusal” my son’s continued survival is…he said again that most oncologists have never seen a child survive past 2 years with what Jake has. Now…while this all is wonderful news and helps with the guilt factor in parenting a child with cancer…etc. WE WANT ANSWERS!!! WE WANT HELP!!! WE WANT OUR SON TO LIVE!!! While Mark and I are SO grateful that we have had this time with our son and we are even more grateful that our time has been so GOOD......I DON”T WANT TO HAVE TO BE GRATEFUL THAT MY SON LIVED 2 YEARS. This is just so unfair…I HATE childhood cancer and I really, really, really hate diffuse pontine gliomas. I mean come on…how is it possible that we can clone human beings but we can not cure cancer. I just don’t get it.

As far as the prognosis goes....that has not changed since Jake was diagnosed. They are telling us the same thing now that they have been telling us since he was diagnosed…he has a few months to live. What are we going to do?…Well, we will continue to live our lives the same way we have since diagnosis…enjoying each day as much as possible, making as many memories as possible and trying to laugh as much as possible. As far as treatment goes…we have switched Protocel formulas and Jake is now taking the EJS-50 formula and we have added celebrex. We are also probably going to add VP-16 (another anti-angiogenesis drug). Even in the face of all this bad news we continue to have faith and hope in our hearts.

Now, for some great news! We are so excited that Aunt Lisa is coming to visit this weekend! She is coming in tonight and staying until Sunday and we can not wait to see her! Thank you again for checking on Jake and continuing to pray for him.

Blessings to all,
Susan

Friday, December 5, 2003 9:43 AM CST

The update.....WHERE IS THE UPDATE??? WE NEED THE UPDATE!!!!

I could hear everyone screaming even as I lay in my bed with Jake...both of us unable to lift our heads from the pillows because we were so sick with the FLU! That is why there was no update until now (that and the fact that I wanted to tell my Mother in person, so I was waiting for that before I updated to the rest of the world)....I have been in so much pain that even my fingers hurt too much to type. Jake now has a double ear infection and even his ear canals are infected...poor thing.

As pretty much everyone now knows....the MRI was not the best news and it did show progression. However, I had honestly expected it from Jakes recent symptoms. Tumor Progression.....two horrible words to hear.....Progression for a child with a diffuse pontine glioma is generally pretty darn bad. What is our next step? We don't know. We were supposed to meet with the oncologist this week but we were too sick to go anywhere.

Thank you again for checking on Jake and keeping him in your prayers. We could really use them and you have no idea how much we appreciate them. They worked before and helped us find Protocel which has allowed us to have the most wonderful 2 years with our Sweet Bear and hopefully they will work again. Miracles happen....

With Love,
The Griffins (Mark, Susan, Jake and La La Kitty)

Friday, November 21, 2003 9:23 AM CST

Wow, has it really been that long since I updated? I have actually gotten ready to update many times recently but have been unable to "follow through" so to speak. Why? One reason and one reason only....we have an MRI scheduled. It is so amazing but scheduling the MRI reminds me of why we normally do not do them. The agony of "The Wait." It is almost as if the second they call me with the date...time stops for me and my brain completely stops working. The ONLY thing I can think about is the MRI and the "what if's." I am a complete basket case.

We have not done an MRI since last December and we felt it was time to do one. We decided that since last years MRI was done the week of Christmas we would do this one the week of Thanksgiving! Not really planned, that is just how it kind of worked out. Next week!!! UGH!!! PLEASE keep Jake in your prayers. He is doing well but is also going through kind of a "funk" as I like to call them. He has had them about 4-5 times since diagnosis and they always scare me to death. He is in a period where he is a little more tired, a little sloppier, a little slurry, more symptomatic etc. Interestingly, his eye is back to normal and he looks like he feels better than he has in a month (pink skin, laughing etc.) ...but he is a little "loopy" as I like to call it. He has always come out of it in the past and hopefully it will be the same this time.

Please, please, please keep him in your prayers that he comes out of this funk like he always has in the past and that he has a positive MRI. Please keep his parents in your prayers that we may find some peace during this time!!!

As Dorey from Nemo says "just keep swimming, just keep swimming."

With Love,
Susan and Mark

Wednesday, November 12, 2003 2:42 PM CST

Okay first let me take the time to say "Thank You" to Abbie and Tracey. Abbie is MITCHELL'S mom and she totally surprised me by making the new Thomas the Tank Engine background that we have up on Jakes webpage. Please take the time to go by and leave her a guestbook message...she lost her son to a brain tumor this year and the webpage she does for him is beautiful. Tracey from Canada sent Jake the most awesome Thomas book in the mail that he absolutely loves. The package actually came as we were on our way out of town and it was the perfect start to our trip. Thank You both so much!!!

________________________________________

This past weekend Thomas the Tank Engine was in Tampa so we got a group of Jake’s friends together to go and visit the big guy. Now remember, my best friend Lisa was going to be visiting from Maryland for a wedding so we decided to go a couple of days early to spend some time with her. We got a little lost on the way there and ended up doing some unintentional sightseeing in Tampa (about 3 hours worth!) but we finally made it there. We were so excited to see Lisa….we got to the hotel about 3 hours before her and were waiting patiently….she finally called to tell us she had arrived and she said she had “a little bit of bad news for us”….. Hummmm….what could the bad news be? Did she get lost on her way to the hotel? Did the airline lose her luggage? Was her airplane running late? Noooo….she had given us the wrong hotel information and she was actually staying at a different hotel!!! And that was the start of the circus that was our trip….. Why was it a circus you ask? Well….beside the fact that we had to take a shuttle bus whenever we wanted to see the person we had come to visit….lets just say that during this trip I came to the realization that I have absolutely no directional skills whatsoever since I pretty much spent the entire week taking us in the wrong direction.

On top of that….Jake was so excited to see Thomas and spend the night with his friends and Grandma that he flat out refused to sleep. He went to bed at 10:00 every night and woke up at 6:00 each morning. Now, please keep in mind that Jake is a boy who normally goes to sleep at 7:30 every night AND usually takes a nap. So, by the time we had our day with Thomas he was completely exhausted and walked around like a zombie the whole time. He was so out of it that I am contemplating taking him back this weekend and NOT telling him where we are going. (Plus it would be fun to get to go back with Daddy too) However, I have to say that even with all of the problems we still had the most wonderful time. We loved getting to see everyone. Jake had THE best time playing with his friends who had joined us (Ryan, Trevor, Myles, and Emma) and the Thomas day was really quite fun. The ride on Thomas was great, Jake got his face painted, he met Sir Topham Hatt and played Thomas games. The most wonderful part was that the conductor knew about how much Jake loves Thomas and they knew he was a special little boy so they made the day special for him. They gave him a badge that only the people who work with Thomas get to have….they gave him a load of presents and a special Tee Shirt. It was wonderful and Jake absolutely loved it. We really did have a wonderful time and laughed our tushies off…it was just one of those vacations that you need to “recover” from.

Thank you again for checking in on my little bear and your continued prayers are VERY appreciated.

With Love,
Susan

PS There are new photos up of Jake with Thomas and Sir Topham Hatt.

Sunday, November 9, 2003 8:18 PM CST

This journal entry is a very special one made on a very amazing day.....November 9, 2003...It was exactly 2 years ago today that Mark and I were given the worst news of our lives. Today is a day we truly thought we would never see. My sweet little bear truly is a miracle....anyone who knows anything about diffuse intrinsic pontine gliomas knows that Jake is a rare, rare little boy. He is walking, talking, playing and ALIVE two years after being diagnosed with the horrible beast. My little survivor made it to the 2 year hurdle. Thank you GOD, for being SO good to us...Thank you Protocel!!!

Thank you also to everyone who continues to check in on our little guy and pray for him and his continued health. Please pray for his Miracle to continue....

Now, can I just end this entry with a little......Yeeeeehaaaaaw!!!!!

Wednesday, November 5, 2003 6:57 AM CST

We had our follow up neuro-opthamologist appointment yesterday and all went well. Jakes eyes still track normally on command and are able to move all the way to the left and the right SSSOOO the double vision is completely unrelated to the tumor at this time and is just regular old lazy eye. Don't get me wrong....the underlying cause is the tumor...but from damge 2 years ago.....Jake has lived with mild double vision on and off for the 2 years....it is worsening because of the muscle tightening. Thank GOD!!! Also, the patching is working because Jake's vision in his left eye is much better and is now almost as good as his right. Now Mark and I just need to decide what we want to do about the laziness in the eye. We need to decide if we will get glasses and continue to patch or do the surgery to correct it.

Jake and I are leaving tomorrow for Tampa....we are meeting Aunt Lisa and going to Busch Gardens together. Lisa is one of my very best friends in the whole wide world!! I have to say we never would have made it through the initial diagnosis time without her. She immediately flew down from Maryland and stayed with us....she went to radiation with us every morning at 5am. (thank you Lisa!) But most importantly she helped us realize that no matter what we were faced with we still needed to sing songs and play games for Jake. She helped me find my smiles and laughter when all I wanted to do was crawl in bed and never get out.

It is such a HUGE coincidence that Lisa will be in Tampa for a wedding the same weekend that we will be in Tampa to visit Thomas the Tank Engine. We are SO EXCITED to see her....it is only fitting that we spend this weekend with her!! We are 2 years out from diagnosis this Sunday.

THOMAS THE TANK ENGINE....The first thing Jake asks me every morning is "what day is it?" Then he counts the number of days until it is Saturday because that is when we will be riding the rails on Thomas.

With lots and lots of Love,
Susan

Monday, November 3, 2003 7:36 AM CST

Our Bear had the best Birthday ever! He is at the age where her really loved and appreciated being the "king for a day." I think all of the kids had a great time running and jumping and sliding. Although I must say that at times it seemed like the parents were having a better time on all of the gym equipment than the children were. The most fun of the day seemed to be when they brought out the huge inflatable "Hot Dog" that hangs from the ceiling and can hold 4 adults. Thank you to everyone who came out and celebrated with us. Jake LOVED all of his presents and even woke up at 4:30 this morning and could not get back to sleep because he wanted to "see all of his presents." (ugh!) One of the coolest he got was a Hermit Crab house with 3 hermit crabs in painted shells. He has already named them...

The biggest one is Crabo.
The medium one is Johnson.
The small one is Henry.

He was really into them and thought they were the coolest last night until.....Henry bit him on the hand and would not let go..(thank goodness it was Henry who bit him and not Crabo...Crabo is HUGE!!) Jake was very upset by this and told me to "throw the crabs in the garbage because I changed my mind.....I want a fish instead." He is now over that and is back to loving them....the one who REALLY seems to love them is our kitty La La.

With Love,
Susan

Wednesday, October 29, 2003 8:27 AM CST

Well, we have another big weekend again this weekend. First Halloween then.....drum roll please.....Big Jake's Birthday Bash on Sunday!! WoooHoo! The cake is ordered, the food is ordered, I bought a helium tank for ballons etc. It is going to be at My Gym and he is so excited. We picked out very special parting gifts for everyone and I have spent the last 2 nights happily individually gift-wrapping each of them. (ugh!) Jake deserves it! What a celebration! I said this last year and I will say it again...I can not believe my sweet boy is having another birthday! HORRAY! This is another one that we were told he would never live to see.

I am so glad that it is finally here. What Jake has been faced with makes us REALLY cherish Birthdays. The celebration just really takes on a new meaning. It is just crummy that it is so bittersweet. On the one hand we are absolutely jumping for joy and thanking Jesus....yet we also look at our boy and pray that this will not be his last Birthday.

I am sure it will be easier next year when he turns six... :)

Now, I have to go out and restock my Halloween candy to give out....I had bought quite a bit last week but sadly.....I ate it. I just can not be trusted.

Blessings,
Susan

Saturday, October 25, 2003 8:51 AM CDT

We had such a great day yesterday! We went to a concert in Miami. The most wonderful person, Terri Moran, surprised us with tickets to... The Wiggles . (I am including the link at Jake's request...it is the link to his favorite Wiggles games.) If you are a parent of a young child you know very well who The Wiggles are....They are basically The N-Sync equivalent for pre-schoolers. We rocked out to songs like...Fruit Salad (Yummy Yummy), Quack-Quack, Hot Potato and my personal favorite...Wags the Dog. We basically danced until we dropped. Jake bought a tee-shirt and a feathersword as souveniers. Jake and his friend DYLAN love The Wiggles so Terri spent 2 weeks trying to get the boys tickets. If you can believe it….tickets were actually selling on-line for up to 250.00$. Needless to say we were not able to pay 250.00$ for tickets so a HUGE Thank You to Terri!!! Dylan picked us up on the way down and we all went together...in his NEW VAN! We also met another protocel family/friend there... Felicia . We all had the most wonderful time.

Thank You Terri !!! Terri is the founder of a Children's Cancer Group here in the area called Conor Moran (it was named after Terri’s son Conor who died from a brain tumor 10 years ago) and they provide the most wonderful outings and services to the families. I actually volunteer there whenever I can.

It is basically a fun filled weekend. Today we are having an outing at Lion Country Safari with the Conor Moran group (with 15 other cancer families)AND we are also invited to a fall festival for Pratt Whitney at The Busch Wildlife Center here in the area. Pratt Whitney has chosen the Conor Moran families as their charity this year for the upcoming holidays. Terri has been so wonderful to us and so helpful from day one of diagnosis. She helped us find the appropriate doctors, visited us in the hospital, gave us the opportunity to meet other families of children with cancer etc. As a cancer family I do not know what we would have done without them. I have actually found that the smaller charities and foundations are the ones that have truly made a difference in our lives. There are really only 2 that have truly had a positive impact in our lives throughout this time. The Conor Moran Childrens Cancer Foundation and Give Kids the World. Give Kids the World is the place where you stay if you choose to go to Disney World as your Make A Wish choice. Planning and taking that trip was WONDERFUL. It came at a time when we were so devastated and sad and it was really the only positive thing that we had at that horrible time. I guess this Wiggles journal entry actually kind of turned into a Thank You entry....


Miracles, Miracles, Miracles….

Love,
Susan

Monday, October 20, 2003 9:05 PM CDT

Okay…I have three things to update about today.

1) Mark (who I like to call my back seat writer ) told me that my reference in the last journal to Jake sticking his eye patch on his forhead and calling it his “wild front eye” would make no sense to anyone who did not know the joke that Jake tells about Davey Crockett. So, here goes…

Q: How many ears does Davey Crocket have?
A: Three. He has a right ear, a left ear and a wild "frontier".

So that is why he calls his patch his wild front eye. Pretty funny one right? I did not really tell it as good as Jake does...It is much funnier when he tells it.:)


2) The dentist visit. When we arrived at the dentist’s office I must admit I was a little concerned. When we went 2 weeks ago with Jake’s friend Ethan the office was empty and there were hardly any other children there. When we arrived this morning…it was packed! There were children everywhere…whining about being there, whimpering about being scared, crying about going back... Overall not a good scene. However, I am proud to report that when they opened the door and called Jake’s name …he jumped up and did not even look back at me. He raised his hand, yelled “here I am” and went back with her. He was back there about an hour and let me tell you…when he came out his teeth were so white I was glad I had brought sunglasses! (thanks again Kendra). He did fabulously well and talked about it all day.

3) The date. Let me tell you all a little about the date. Now…don’t be jealous … But it was WONDERFUL!!! Mark actually surprised me and had a limo pick us up. I could not believe it. There were flowers waiting for me in the limo. He took me to my favorite restaurant in Ft. Lauderdale. We danced…we had a bottle of wine…we had the most delicious dinner. Very romantic. The big surprise of the evening was when Mark brought out a present that he had bought for me…a gorgeous pair of earrings. I was totally surprised. I would have to say it was one of the most romantic and beautiful evenings I have had in years. Thank you Mark!!

Now…I told you not to be jealous and I know that most of the ladies reading this are feeling a tiny little pang of jealousy…Don’t…that was only my FANTASY DATE. My REALITY DATE consisted of Mark and I eating pizza with my mom and Jake…us putting Jake to bed … and Mark and I going to the movies to see Mystic River. We actually did have a great time. The movie was excellent and Mark and I got to go out together without our little monkey in tow. And the best part was that we got to sleep in the next morning because my mom entertained Jake when he woke up in the morning.


Love,
Susan

Saturday, October 18, 2003 2:40 PM CDT

My Mom is coming up to spend the night with us tonight. This is fabulous news because Mark and I actually get to go on a DATE!! I think our last one was actually....let me think...yes, it had to be before we were married. Well, maybe it was not that long ago but it has been awhile. We are so out of touch with dating that we have absolutely no idea what to do. Gosh that sounds so lame. When my mom babysits she usually lets Jake stay up until he falls over so the house should be in interesting condition by the time we get home.

Jake is still wearing his eye patch well. It is a little freaky looking because he likes me to draw on it before he wears it. Lately he has been asking me to draw an eye. It looks really...strange. When he is done wearing it he likes to stick it on his forehead and wear it as a "third eye". He calls it his "wild front eye." Lets just say he gets lots of attention with this eye patch.

Jake's first Dentist appointment is Monday. I am either going to have GREAT news to post about how smoothly it went....or HORRIBLE news to post about how horribly it went. Jake is a pretty extreme guy. I am optimistic.


God Bless,
Susan

P.S. Our friend JAKE had a very interesting and cryptic message today on his website....his mommy said she has some interesting pictures to upload that show what Protocel has done for her Jake...hhhuummm...I wonder what it could be?? I guess we will just have to wait and see.

Wednesday, October 15, 2003 2:26 PM CDT

You know if my boy could go a month without a stuffy nose I would be so happy. He is again stuffed up.

Thomas the Tank Engine has always been one of Jakes favorites. When he was diagnosed and spent alot of time in the hospital he always had a bag full of Thomas characters with him at all times. He was so into them that he even had the doctors and nurses learning their names. November 9th marks the 2 year anniversary of Jake's diagnosis. Well, I found out that Thomas the Tank Engine is going to be visiting close to here that weekend so we are going to go and visit him. I am planning a SURPRISE weekend for Jake. We will NOT be telling him. It is so cute...I already bought us tickets for rides on Thomas. You get to meet Sir Topham Hatt and Lady Hatt and they have all kinds of games and activities set up. Jake will absolutely LOVE IT!! It will be a wonderful way to spend a somewhat emotional weekend.

Thank you so much to everyone for keeping us in your prayers. Sadly, not many children diagnosed with diffuse pontine gliomas make it 2 years and we are kind of ...hhhuummm... emotional?

With Love,
Susan

Sunday, October 12, 2003 12:02 AM CDT

We had such a fun weekend! One of Jake's best friends Brayden had his birthday party this weekend and it was so much fun. He had a bounce house, a GIANT slide, a clown and a visit from The Hulk. There was even a visit from a fire truck, an ambulance and a special operations unit. The firemen were the same ones who came to Jakes "emergency birthday party" the week after he was diagnosed in 2001. It was neat to see them because they remembered him from then and he is so much better than he was back then. One of the things that was the most fun was that they put the firehose on and all of the kids played in it. We were able to see many of our old friends from when we lived in Boca Raton before we moved up here. Jake played with all of his old friends... Brayden, Ryan, Bree, Matthew, and Jake.

We had a wonderful time.

Cherish every day,

Susan and Jakey Bear

Friday, October 10, 2003 10:27 AM CDT

Sigh.

I am embarassed to say that I lost it in public the other day. Mark and I have been trying to have a baby and I had a doctors appointment about it the other day. I took Jake with me and there was one other couple in the waiting room. The woman was laying with her head in her husbands lap while they waited. The man was lovingly stroking her hair as they spoke. Jake watched them for a long time and I was wondering what he was up to. All of a sudden Jake got up, cautiously walked over to them and stood in front of them. I heard him say "I hope you fell better" then he gently gave the woman a huge kiss on her forehead and he came running back over and sat with me. For me, that was all it took for the waterworks to start. Sometimes it is the sweet things he does that take my breath away.


With Love,
Susan

Wednesday, October 8, 2003 3:25 PM CDT

Jake is on his way to overcoming his fears of the dentist. This morning Jake and I actually accompanied one of his best friends (Hi Ethan!) to his cleaning. His mommy has had him at the dentist several times and he does well with his cleanings. So, we joined him and Jake watched. They both did well and Jake should be much better at his own appointment because of this.

Also, I figured out why Jake was so scared of going to the dentist whenever I mentioned it...when we were driving to the dentist office Jake asked me if Ethan was going to have to get a shot? I answered, "no, why would you think that?" His reply was, "but they always get a shot in the Critters book when they go to the dentist." LIGHTBULB!! The book I have been reading him to make him more comfortable about the dentist is pretty long and includes a part where the little boy gets a shot in his mouth that does not hurt but that makes his mouth feel funny!!! You know...I love him so much and had nothing but the best intentions....but I was reading him a book EVERY NIGHT about getting a cavity filled. And I wondered why it seemed like he was getting more frightened??!! HHUUMMM I wonder. LOL I am sure this will all turn out well (with the help of everyones wonderful ideas) like everything else usually does.

I would like tell everyone who gave us ideas to help get Jake used to the dentist thank you. Everyone was so helpful gave me so much wonderful information about children and dentists. Thank you, thank you, thank you...to Kendra (amazing ideas) Kathy Cummings, and Tracy. I so appreciate the time it took for you to sit down in your busy days and write me the information. (my apologies if I have forgotten anyone)


And for the best news of all....we actually set the date for Big Jake's Big Birthday Blowout!! November 2 at My Gym. He is so excited. I can not believe he is so fast approaching another birthday!!! Another blessed year passed....it really does fly.

Cherish every moment,

Susan, Mark and Jakey Bear Griffin

Monday, October 6, 2003 1:38 PM CDT

My mom just got home this week from an extended visit to Ohio. She had gone there to take care of my aunt who had to have a hip replacement surgery. When she came home Jake and I decided he would skip school so we could go to the airport and surprise her by picking her up. Keep in mind she lives about 2 hours away from us. We went to the store bought balloons and a welcome home card. Normally her best friend picks her up...the way they do it is...when whomever is coming in from out of town lands...they call the person who is picking them up and tells them to leave the house...then they wait out front at the curb with their suitcase.

The phone call came in...Jake and I were as quiet as mice. We hid in the back seat of the car and when we pulled up to the curb we opened the window and had the balloons hanging out while we screamed "SURPRISE!!" Well..we were all surprised...there sat my mother..in a wheelchair with a broken right arm. She had fallen while in Ohio and did not want to "worry" me by telling me because there was nothing we could do. So she just kept it to herself. Honestly, I would have normally been very upset with her for not telling me...but seeing as how I was having my own "crisis" here...I am actually glad she did not. And.. how mad can I really be? I did not call her about our retinoblastoma scare. Now that she is home she will probably have to have a surgery to fix it. Please keep her in your prayers.

Jake had no school today so we went to the beach with the boys across the street. We had a wonderful time. Messy but wonderful.

With Love,
Susan and Jakey Bear

Thursday, October 2, 2003 11:59 AM CDT

Oh my goodness what a week we have had. Stressful to say the least. It all started when my friends, Scott and Rebecca, called me Sunday night, a little concerned about their niece. They had taken pictures of the family when they were on vacation and when they had gotten the pictures developed …in one of the photos their niece has what appears to be one white eye. Together we got online and did some research…basically what we found was all bad news. The scariest of which was that it could be a tumor of the eye, which is called a retinoblastoma. (thankfully, she is fine)

Now, Jake has had problems with double vision on and off since he was diagnosed. He used to actually think it was funny and would often say he saw two mommies and laugh. At times he would even do it on purpose by relaxing his eye muscles…because he thought it was funny. When he started school he actually began to self correct it by tilting his head slightly whenever he needed to concentrate on something he was doing. This would bring his eyes into proper alignment. Now, the scary thing about double vision is that it can also be a side effect of having a pontine glioma. So I actually try to keep a careful record of it whenever I notice it in Jake…I find it easiest to do by taking photos for comparison. Tuesday night I thought Jake’s eyes looked a little funny so I decided to take another photo to compare (we use a digital camera so it is instant) and when I did…JAKE’S LEFT EYE WAS WHITE. Thankfully, Scott and I had already done the research 3 nights earlier…so I already KNEW it was bad! ( now please keep in mind that the next few lines are all just examples of the cancer mom/crazy thought processes going on in my head) Retinoblastoma? Jake had radiation and radiation can cause secondary cancers. As far as the statistical impossibility goes we are a walking statistical anomaly. First because of Jake’s diagnosis….second because he is still alive…third because he is basically normal. So I know it is possible. We call our friends and find out who is the best Pediatric Neuro-Opthamologist in the area. Scott and Sharon both say Dr. Lee Friedman without missing a beat. They go on to say he is “the man” and he knows his stuff. If he says it…it is so. Next morning, 8 am, I call for an appointment…the first available is not until November 23rd but they manage to squeeze us in for 1 pm that afternoon. To make a really long story tiny bit shorter….Jake does NOT have a retinoblastoma.

Well, if you can believe it this scare actually turned out to be a positive thing because I had thought that double vision which is caused by tumor issues could not be fixed so we never looked into it. The doctor actually spent a lot of time examining that and he says that Jake’s eyes track basically normally and he does not think there is any current tumor reason for the double vision at all. It might have started because of pressure way back when but he does not think that is what is happening now. He said he thinks that it is muscular and that it is getting worse because Jake is “giving up the fight” so to speak. Jakes brain is starting to not read information from his left eye and his vision is already worse in that eye. That is what happens in children younger than 6 years old. So…my boy is a pirate now and is wearing a patch for 2 hours a day over the good eye to strengthen the weak one…if that does not work there is surgery to correct it. We go back in a month and see how it looks. We will know more then. It was a hard few days and we are all exhausted. But I have to say...it made me realize what a hard month I had been having...we have a huge number coming up...24 months out from diagnosis. We are only 1 month away and it had been effecting us and making us scared without us even realizing it. I think this whole "scare" made me realize that I have again been getting lost in the statistics and forgetting to focus on how well Jake is doing. He is well... and I have to just remind myself of that... and again try not to get bogged down in the what ifs....the what if's really do keep us from enjoying our life. I mean for goodness sake...we have a Birthday to plan!!!

Blessings,

Susan, Mark and Jake

Monday, September 29, 2003 6:48 AM CDT

Okay..I need everyones help again. Everyone was so helpful with the most wonderful ideas when Jake was having nightmares. We combined the ideas and Jake is having no more nightmares. Reading all of the positive guestbook entries and letters about it really helped. In fact, now Jake actually goes around giving advice to others when they get scared at night.

So...here is my dilemma....Jake has had his fair share of doctors appointments and he handles them "pretty well." He gets a bit hyper and loud when I am actually trying to have a conversation with the doctor but he does not get scared anymore. He is even good with shots and pokes, at this point. However....he needs to go to the dentist. He has never gone yet (I know, I know he should have gone by now but you know...lets not even get into that...it just was not that important in the grand scheme). The problem is that he is petrified of the mere thought of going to the dentist. Is this something we are born with?? What can I do to make it easier? Should we "talk about it" to get him used to the idea or does that just make it worse? Whenever I have tried that in the past he gets very upset about the thought of going. We have a "critters" book we read about it but it does not seem to be helping. Any ideas would be greatly appreciated.

By the way...I have not told Mark yet (HI MARK!)...but I am breaking down and buying one of the "Bruce the shark" from Nemo costumes on Ebay. It is a bargain at the marked up 300 percent price of 100.00$$. Oh well, I learned my lesson...I am buying next years costume in May. AND...I am buying 10 of the "hot" new costumes to sell on ebay.

Hope everyone had a blessed weekend.

With Love,
Susan, Mark, Jake and La La (kitty)

Thursday, September 25, 2003 9:52 AM CDT

Jake's friend DYLAN got to go on a helicopter ride the other day. He was given the wonderful gift of a helicopter ride in the traumahawk. Very neat!! He and his brother were given engraved "official" pins with their names on them..hats..shirts etc. Dylan loves planes and helicopters so it was perfect for him. He has also been having a rough time lately and was recently hospitalized for an electrolyte issue. I am so glad he is better....he is such a trooper and he very much deserved that ride. They could use some prayers and if you go to his site his mom actually links off to some of the newspaper articles.

You know, when Dylan was hospitalized the other week it was for something that was really pretty minor..in a "normal" child. However, when his mom takes him to the hospital they automatically write him off because he has a brain tumor and is on a vent. His mom automatically gets the "do you really want to correct this" speech, before they even know what is wrong with him. Do you know what the treatment was? A diuretic. Of course she wants to treat this.

Hearing about that automatically brings back memories of when Jake was diagnosed. When they were doing his first MRI following his ventricularostomy at Miami Childrens Jake was very sick. After the sedation they gave him for the MRI he had bradycardia (low heart rate) and his heart rate was 32-37 beats/minute. He was having extreme fluctuations with respiration and was just not doing well at all. They had to discontinue the MRI and rush him to PICU. They were having trouble regualting his breating so he was admitted to PICU for 2 days. I will admit he was very near to deaths door at that time...he was incoherent...could not walk or talk. However, keep in mind he had just been diagnosed...we had not even fully grasped the concept of what we were facing. Do you know that at one point the PICU doctor actually came over to me and said we should think about leaving...they were very crowded and needed space and he actually took me aside and said "PICU should be saved for children who will be getting better. You understand don't you?" Thank God that Dr. Khatib, our neuro-oncologist, is a caring person and he had a talk with the doctor but can you imagine? I am so sorry we are crowding up your PICU with my son's "horrible" brain tumor. Well, look at where we are now, 2 years later. I had actually forgotten all about that until Sharons recent hospital visit for Dylan.

Thank goodness that Sharon and I met that day in the waiting room of Dr. Khatib's office. Both because of Protocel and because we now have such a wonderful friendship. Her son was admitted to PICU for 44 days the day I met her....he was sent home with the "there is nothing more we can do" phrase. Thank goodness that she put her son on Protocel back in January 2002. Protocel is the first and only thing that has been able to stop and shrink Dylan's brain tumor. He had tried everything.... every chemo, radiation etc. Nothing ever stopped it. Slowed it..yes..but never stopped it. With Protocel Dylans tumor has shrunk to the point at which his radiation field ended.

As I read the story about Dylan in the papers ... it made me realize that Jake and Dylan's Protocel journeys have come full circle. Dylan started using it 2 months after Jake and Sharon has become one of my best friends. Sharon talks in the paper about how Dylan is on an "alternative" that has been keeping Dylan alive for the past 2 years. I remember like it was yesterday the conversation I had with my friend Marnie in November 2001 about the magazine article she had read about a woman who claimed that "an alternative" had been the only treatment she had used for her spinal GBM (14 years earlier). Her name was Elonna McKibben . Marnie wanted to make sure I would not be offended if she gave me a copy of the article. Offended? No way, praises to God for that article...if we had not called the editor and gotten Elonna's phone number to find out what she had used (Protocel) my son would not be here today...Dylan would not be here today...(many others as well) Our two boys have been through this whole saga together. No matter what our futures hold...we have been blessed with time with our babies that we never would have had. And now Dylan's success with "an alternative" is written about in 4 newspaper articles. What a wonderful circle!!!

With Love,
Susan

PS Don"t forget to stop by and leave a message for DYLAN and also don't forget to stop by and check on Jake's cutie pie friend CAITLIN

Sunday, September 21, 2003 7:27 PM CDT

What a difference 3 days and a bottle full of Augmentin (an antibiotic) make. My bear is like a new little man. We went to the mall on another costume hunt and Jake had a few spells of hysterical laughter that were music to my ears. I had not even realized that his giggles had been missing until they were back. I am glad he is feeling better. Now, the costume saga...the never ending costume saga....he still can't make up his mind. The problem is that he loves to look at all the costumes...but actually putting them on and wearing them makes him a little nervous. He told me today that he is just going to go dressed as Jake since we can not find a Bruce. So, I am still searching ebay.

My in-laws live in Elizabeth City, NC which is an almost coastal area that was hit pretty hard by Isabel. Thankfully, none of them were hurt but the girls dorm at Roanoke Bible College where my father in law is president and my mother in law is librarian did lose its roof.

Thanks for visiting and checking in on Jakey Bear. He told me that I am still allowed to call him that...everyone else has to call him Big Jake. I must say it is pretty cute when I pick him up at school and all of the other children are yelling "bye Big Jake."

Keep on praying for Jakes Miracle.

With Love,

Susan, Mark and Jakey Bear

Friday, September 19, 2003 4:30 PM CDT

It is official...my boy is sick, sick, sick. He has been fighting a cold since the beginning of September and had actually been doing much better. He had been well enought to go to school etc. I had him on the nebulizer so it would not settle in his chest. Well, I had the brilliant idea of taking him to an allergy specialist since he has allergies and athsma to get some answers about how to help him. All I ended up getting was information on what I could do to make him REALLY sick. The allergy doctor said to take him off the nebulizer...so I did...well 3 days later my boy has a ear infection and bronchitis. When I took him back to the pediatrician today she was stunned??? Why would I take him off the nebulizer? Oh well..it is my fault I guess. I honestly did know better. My poor bear.

I hope everyone has fun at the protocel picnic this weekend. (Sunday) I am so jealous that we did not go. It is a get together they have every year where you get to meet others using protocel. It is especially nice because alot of the "old timers" always go. Those people with stories like ours who are 10-20 years out from diagnosis. Helps keep the hope up. Maybe next year.

Zachary's Family went as well as Maddie's Family . I hope they have a safe and wonderful trip.


With Love,
Susan

Tuesday, September 16, 2003 6:20 PM CDT

Well our cosutme hunting expedition did not go as well as planned. Jake was so in love with so many of the costumes that he could not make up his mind. Our choices are as follows....

*Bruce from Finding Nemo (still sold out) Tracey I may be taking you up on your offer of shipping it down from Canada.

*Batman (this one is actually very cool)

*Buzz Lightyear

*Thomas The Tank Engine (same thing he was last year...this pariticular costume would save us 30.00$)

*Spiderman

*Spongebob Squarepants

So, as you can see we have gotten absolutely nowhere. I can picture it now that he will not be able to make up his mind...and when he finally does that one will be sold out as well. Votes are being taken in the guestbook for favorites.

Now..of course if money was no object you know he would have them all...In many ways thank goodness money is an object..we are still feeling the tempermental effects of the post diagnosis, Jake gets whatever he wants, free for all. He is a strong willed little bugger. But I love him!!

With Love,

Mark, Susan and Big Jake Griffin

Saturday, September 13, 2003 10:23 AM CDT

We have had a nice week. Jake is doing well and still cute as a bugs ear. I know it is kind of early for the pumpkins but we are going to pick out Jake's Halloween costume this weekend. Halloween is his FAVORITE holiday. He loves everything about it and actually enjoys it more than Christmas...I think. It is all he has been talking about and if he wants his costume now, fine with me. He usually wears his costumes for weeks before and after October 31st. Obviously we are not the only ones who get his costumes early. He had his heart set on a "Bruce" costume. Bruce is the shark from Finding Nemo. I called The Disney Store and they are already sold out??? He is so upset about it....that is also why we are letting him get another one now. I will let you know what he chooses. Even I do not know for sure what he is going to choose. Any guesses?

With Love,
Susan

Wednesday, September 10, 2003 4:04 PM CDT

You know, I am so sick of doctors thinking they have to remind me of Jake's prognosis every time I see them. It is almost like they enjoy it. They must have to take a special class on it.

We went to see a new neurologist the other day. I took Jake to have an exam "just because." I sit down and the neurologist gets our history. Of course the second I mention that my son was diagnosed with diffuse pontine glioma he begins speech about the prognosis etc. I cut him off and let him know that I am aware of what he thinks will happen to my son. (Does he actually think Jake has had this diagnosis so long and I have no idea about the prognosis?) He had not even seen Jake yet as he was telling me all this. Giving me his sympathies. I told him about our results with Protocel and he gave me the now very familiar condecending smile. I have no patience for that anymore. That kind of talk used to depress me to no end..now it just aggravates me. I will not allow them to take away my hope anymore. What good does it do to live with no hope? It just wastes precious time that can be filled with laughter and smiles. Anyway, I had finally had enough and I said, "look, this is getting us nowhere. Before we go any further why don't you take Jakes scans in the other room and look at them..then we can continue the conversation." He was in there looking at the scans for over 1/2 hour. When he came back out he had a stunned look on his face. The first thing he says is "amazing." He apologizes for the doom and gloom talk and says he honestly does not know what will happen to Jake. He says again that the scans are amazing and asks me to go get Jake.

My bear comes running in the office and the exam began. The doctor proceeds to give Jake a full exam and says he has never seen anything like it. He actually encourages me to have Jake examined by a neurologist once a month because his case is so "remarkable." The last thing he asks me is if I have any information on Protocel that I could give him. I gave him an e-booklet and was on my way.

I am so over people telling me that Jake must have been misdiagnosed. People who have never even seen our scans and/or are not even doctors. "He must have had a JPA, his tumor must have been exophytic, it must have been VERY slow growing, it must have been in a different location, must have been focal etc., etc., etc." I just love how everyone else seems to know so much about my son's situation. I have asked our oncologist numerous times about the possibility of misdiagnosis. He is makes it very clear that anyone who actually saw Jake scans would never even hint that he was misdiagnosed. What does that mean lies ahead in the future for Jake? I honestly have no idea. You know what I hope. I am just sick of doctors who don't know a thing about him or his case assuming that they do know his future.

What is so remarkable about Jake's scans? I honestly don't know. But something is because every doctor reacts the same exact way.

If you want to know what Jake's tumor looked like at diagnosis just link to this BRAINSTEM GLIOMA ARTICLE and look at page 4, picture B. See the large white bullseye in the middle of the brain? That is EXACTLY what Jake's tumor looked like except Jake's was noticably larger. But that axial cut is where Jake's tumor was 6.2 cm accross (transverse).

With Love,

Susan and Jakey Bear

Sunday, September 7, 2003 9:34 PM CDT

Doesn't it sometimes seem like EVERYBODY has cancer? Before Jake was diagnosed cancer was honestly something I did not really think about and was truly something that happened to "other people." How naive were we? Once Jake was diagnosed it seemed like childhood cancer was everywhere. I know it is not any more prevalent than it was 2 years ago...but it sure did open up our eyes.

We moved into the house we are currently living in about a year ago. Two days after we moved in... the woman who lives across the street, Dina, came over and welcomed us to the neighborhood. How nice is that? Well, she quickly became one of my best friends. She has three boys ages 9,7 and 4. Jake loves to play with her boys...especially the 4 year old. They used to carpool together and we all hang out quite often. We also had an instant connection because she is a breast cancer survivor. She beat breast cancer 3 years earlier. Sadly, in January of this year her beast returned. It has come back as skin and lung mets. Please keep her in your prayers as her cancer is seeming to now be quite aggressive. She is a friendly, outgoing, caring and beautiful young woman. Most importantly...she is the mother of three young boys who need her in their lives. Please keep her in your prayers.



God Bless,

Susan

Thursday, September 4, 2003 8:35 AM CDT

Okay, Scott Finestone started the Cancer Sucks Club...I am thinking of starting the Asthma Sucks Club. I know that Asthma is not NEARLY as bad as cancer but it still really sucks. It seems to take about 1 week out of every six weeks of our lives. Jake started school last week and went Wednesday, Thursday and Friday. By Sunday he had a cold which quickly settled in his chest. We went to see the doctor and she recommended from now on whenever Jake gets a cold to automatically put him on the nebulizer. He already has to have an inhaler at school to use an hour before he goes on the playground. I actually spoke to Scott Finestone about it and he said that Zachary had always had very bad asthma which went away after his stem cell transplant. Not that we are considering a stem cell transplant to get rid of the asthma...we just got the name and phone number of his allergy specialist. We are going to see him/her on September 15th.

We have been working on Jakes phone skills lately and I have been letting him answer the phone so he can learn the proper manners. Just a quick review of how wonderfully he has been doing....Yesterday the phone rang and he answered it. He quickly said "Hi Daddy" and began a long winded conversation about his day. He told how we had made a banana cake, how he had played dress up in Daddys clothes etc. When they were done talking he said "here is Mommy" and handed me the phone. I then greeted him with "hi honey" (or it might have actually been " hi Daddy" I can not really remember) and went on to tell him about the problems we had been having with the washing machine. I am very embarassed to report that it was not Mark on the phone at all but Jake's oncologist. UGH! A lesson learned...I will always check the caller ID from now on when practicing our phone skills.

With Love,
Susan

Monday, September 1, 2003 9:55 AM CDT

A three day weekend...we throughly enjoyed it by doing absolutely nothing special. We just relaxed and hung around the house and had the occasional visit to the park.

I hope everyone had a great long weekend as well.

With Love,

Susan, Mark and Jake Griffin

Tuesday, August 26, 2003 5:31 PM CDT

We are home...again!! Our new motto is...live each summer like it could be your last. (even though it won't be)

We have had the most wonderful summer. When we arrived home from Orlando Jake and I still had travelling feet so we decided to keep on going. We planned a spur of the moment trip to North Carolina for the next morning and off we went, with Mark in tow this time. Our first stop was Elizabeth City, North Carolina to visit with Marks family. We stayed there for 3 nights and then went to Williamsburg, Va. Jake has become quite the theme park lover so we went to Busch Gardens. We had so much fun. It is amazing, but just this past May Jake was pretty scared of many of the rides at Universal Studios. This time he was a wild man. He wanted to go on all the rides...even the bigger ones with huge drops. He went on the rollercoasters, the log rides, bumper cars, etc...numerous times. Overall, out of all the theme park rides we have been on this summer, Jake says that his favorite is the test track at EPCOT. He and his friend Bree rode that ride many times on their trip.

Following Williamsburg we went to the beach (The Outer Banks) for the weekend. While there we got to visit with much of Mark's family and although the ocean water was too cold the kids had a great time playing on the beach and swimming in the pool. Jakes favorite at the beach was Jockeys Ridge...a huge group of sand dunes that you walk up then run/jump down. He loved it.

All in all we had the most wonderful time and made the most wonderful memories. I hope everyone else had an equally fulfilling summer. Life is just so much fun....even if you are just sitting outside, swinging in the porch swing at your in-laws house, surrounded by family and watching your child learn how to jump rope from his 6 and 8 year old cousins.

Love,
Susan

Saturday, August 16, 2003 1:28 PM CDT

We are home!!! We had the most wonderful time in Orlando. The only "bad" thing about the trip was that we had to return home earlier than we had planned because I hurt my foot on the first day there and it got worse and worse with each 50 miles I walked in the parks. I had to come home early for an emergency doctor visit.

Thank you so much to everyone who wrote me with ideas and support about Jake's nightmares. I have read everyones letters and guestbook entries to him and he loved them. He is actually much better. Now, after nighttime prayers we take a few minutes to "use our imaginations" and visualize many of the beautiful things that God has created. We talk about rainbows, the beach, clouds, laughing babies etc. We talk about how Jesus is looking out for Jake and how He protects us. Jake also likes to sleep with his Stitch stuffed animal from the movie Lilo and Stitch. He says that Stitch will scare away any monsters that try to come around.

All of this has helped and Jake is sleeping much better. He does not get so worked up before bed time and falls asleep much easier. He only woke up screaming one time this week...a major improvement.

Now for some Protocel news:

A few months ago I asked that everyone say a prayer for a special little boy who was not doing well. His name is JOSHUAH WILLIS and he was diagnosed with a brainstem glioma in 2001 that had recurred in December 2002. He started Protocel in March and his tumor has been stable again since then. Please continue to pray that God grants him his miracle.

With Love,

Susan

Saturday, August 9, 2003 7:41 AM CDT

Jake and Bree had a great time at their sleep over the other night...until it was time to actually sleep. We ordered pizza, we baked cookies, we played, etc. A great time. Until it was time to go to sleep. As you can see in the picture they were ready to sleep and all snuggled in the "cottage bed." Heather and I gave them goodnight snuggles and kisses and turned out the lights and left. Bad news..Jake could not sleep. He was "very worried" about the things on Brees walls and ceilings. He ended up not falling asleep until 10:00 pm, in Aunt Heathers bed with me. So Jake did not actually have a sleepover with his best friend Bree..he had a sleepover with Aunt Heather and Mommy. He spent the night sleeping in between us.

Now, because of all the fears and concerns before actually falling asleep... Jake proceeded to wake up, screaming at the top of his lungs, 3 times throught the night, due to bad dreams. To top it all off he woke up at his normal time of 6:00am. I would like to take this opportunity to apologize to Heather for these piercing screams waking her in the middle of the night and to also thank her for being so understanding.

Now, I know what you are all thinking...."What about Circus Camp?" Well, I am sad to say that Jake was so tired and cranky from his night with no sleep that he was unable to attend Circus Camp. He went in for 10 minutes, got scared, and cried until I went to pick him up. Did I mention that Heather, Tracie and I were going to have a spa day while the children played at circus camp together? My cell phone rang just as I was putting my spa shoes on my feet. So I went to circus camp, scooped up my bear and took him home to sleep. Which he did for 3 hours. You know, it is amazing but when my phone rang and the camp leader told me about Jake...I did not think, "ugh, why couldn't he just suck it up and stay at camp until my spa time with my friends is over?" Or "just keep him there and he will calm down eventually." The only thing I could think about was going over there and hugging him. My little boy has been through so much more than most of the "normal" children out there and if he is scared....I just want to hold him and make him feel better. I love him so much.

I actually would love to hear from anyone who has had experience with their children having bad dreams. Jake has really been having bad ones lately. He is very concerned about monsters before he goes to bed. He wakes up screaming at the top of his lungs several nights a week. Sometimes he will talk in his sleep and say things like, "I am very worried." One time he even told me his dream had been about blood coming out of him...everywhere on his body. Obviously that concerns me. Does anyone have any tricks of what they did to help their children through this stage...or do they just grow out of it? It breaks my heart to see him so scared.


****We are off to Disney World. We will update when we get back. ****



Thanks,
Susan and Big Jake

Wednesday, August 6, 2003 2:00 PM CDT

Oh my goodness!! My boy is so excited. He is having his first sleepover tonight and he is on pins and needles with excitement. One of the things he is most excited about is...he is getting to sleep in that really cool fire-truck bed in the picture! I am really thinking that the siren should be "broken" for tonight. I would definitely not put it past Jake to get the siren going when he wakes up at 3 am to go potty.

We are spending the night with my friend Heather and her two children Bree and Brayden. They live like an hour away from us and tomorrow morning the kids all have a special day planned. Circus Camp. Jake is very insistent that he will be able to do the flying trapeze by this weekend. Thanks to our friend Tracie for the great invitation.

We are also considering a trip to Disney next week. Very spur of the moment but it would be fun. My only concern is that it is approximately 98 degrees here and some schools are not back in class by then. Disney in the summer is a fabulous treat with a bit of mild torture sprinkled on top. I vividly remember walking around there 2 summers ago, melting in the pooh line for 1 hour, thinking...wow it's really hot. LOL

Honestly though I really do hope we end up going. There are 3 moms and 5 children. Jake would love it.

It is all about the smiles!

God Bless,

Susan

Tuesday, August 5, 2003 6:49 AM CDT

Mark and I were sitting on the couch the other night watching "Dateline" and by the end of the show we were in complete amazement and disbelief. Jim Abrahams is a film-maker who made the movies "Airplane", "Naked Gun" and "Hot Shots." Nine years ago his then one year old son, Charlie, began to have seizures. His seizures were very bad and he sometimes would have as many as 100 a day. The parents took their child to see a "nationally recognized expert", Dr. Donald Shields at UCLA to get help.

Charlie was put on medication after medication and nothing was working. They even tried to "fix" their son by allowing him to have a brain surgery. Nothing worked. Their doctor says they were actually at the point where they were going to start using experimental drugs in an effort to help their son. The family was so upset with what their son was going through and they were afraid he would have retardation due to brain damage from the unchecked seizures. Eventually the father began to do his own research. In his quest he ran accross a book that described a diet (the ketogenic diet) that claimed to have a 50-70 percent success rate with curing epilepsy. The family was dumbfounded. Rightfully so. How could something like this be? I mean....this diet which "claims" to be an effective cure for epilepsy had been around for over 70 years.

The father immediately asked his doctor and what do you think he said? "Go ahead and try it." "Wow, it is worth a try." "Why not at least try it?" NO, NONE OF THE ABOVE. He actually advised against it. Thankfully, the family ignored this advice and went to visit the man who wrote the book. (Dr. Freeman) Then they tried the diet. The seizures began to go away immediately and were completely gone within days.

Charlies dad was so excited to bring this news to Dr. Shields back at UCLA. My goodness, who would not be excited? His doctor could share this news with his other patients and hopefully some of them would have the same great results. Right? Not exactly.

Turns out that Dr. Shields had actually known of this diet for years. I know, I know what you are thinking...What? Why didn't he tell the family about it and help them save their son from brain damage? I think that including a copy of the actual interview transcript is the best way to go from here.

Larson: “You had some knowledge that this diet was probably working at Johns Hopkins and yet you dissuaded Abraham’s from attempting it. How come?”
Dr. Shields: “Well because I don’t think we had exhausted all of the medical approaches yet. There were actually still other medications that we hadn’t tried yet.”
Larson: “Dr. Freeman tells us that 50 to 70 percent of patients that come through his doors and get put on the diet have success. can you think of any drugs in these hard cases that have 50 to 70 percent success rate?”
Dr. Shields: “Probably not that comes up to that level.”
So why are modern doctors ignoring this diet? Charlie’s own doctor has a surprising answer.
Dr. Shields: “There is no big drug company behind ketogenic diet and there probably can never be unless somebody starts marketing sausage and eggs with with cream sauce on it as a drug.”
Larson: “You are saying in a sense one of the reasons the ketogenic diet is not popular at this point is because there is not a big drug company behind it selling it to the doctors?”
Dr. Shields: “I think that’s probably true. I hate to say that, but it’s probably true.”
“It doesn’t not come a pill form,” says Jim. “It cannot be administered with a scalpel. And the only people who profit from the ketogenic diet are the patients. ”

Who would ever have thought there was an inexpensive cure for epilepsy out there that doctors don't want to tell you about? Sounds like a very familiar story.

This is where I end my journal and encourage you to link off to the full story and read the whole thing for yourself (just in case you did not believe me) CLICK HERE . I highly recommed everyone read it.

With Love,

Susan

Sunday, August 3, 2003 7:54 AM CDT

I am taking this opportunity to make a correction to my last post. Mark reminded me that I did not really spend over an hour putting the screens back in the windows and getting filthy. I actually left them on the front lawn for him to put back when he got home from work so he could get filthy instead of me. Sorry Mark.

With Love,

Susan

Friday, August 1, 2003 9:35 AM CDT

For the most part Jake is a very happy 4 y.o. boy. He is always laughing and joking and he loves to talk to everyone. However, he is also very strong willed and parenting him can be a real challenge. For example, the other day I was in the kitchen making dinner and Jake was in his playroom when the doorbell rang. I answered the door and who was standing there?? Jake. He was standing there at the front door laughing hysterically. Now..the door was locked when I answered it and a quick look at the back door told me that that exit was locked as well so he could not have left through that door either. How and when did he get out? I attempted to question him but he was laughing so hard that he could not tell me anything. After he calmed down and stopped laughing he asked me to come with him to his bedroom to "see what he did." What he had done was open all the windows in the playroom and his bedroom and systematically pop all of the screens out and toss them on the front lawn. He then went into his bedroom and climbed out of the window and went to the front door and rang the bell. I then had to spend the next hour and a half fixing the screens and getting filthy. UGH.

It was hard to be mad at him because he was so tickled with what he had done and it was kind of funny. But at the same time it is dangerous. He could have done damage to the screens/windows or gotten very hurt himself. I just tried to explain that all to him and let him know he is not to do it again. As a parent it is so difficult to balance discipline with leniency. When you throw his having cancer into the mix and the guilt associtated with this it only makes it more difficult. When Jake was first diagnosed he got whatever he wanted whenever he wanted it. Whenever we would go see the oncologist he would always ask "how is the discipline going?" He would remind us that just because Jake has a brain tumor does not mean he should run wild. We agree with this and we try to maintain the balance because we want Jake to be happy but we also want him to be liked.

Remember to cherish every moment.

With Love,

Susan

Please take the time to say a prayer for Luke Ervin and his family. He has finally given up his fight and has gone to be with God and thankfully his suffering is over.

Tuesday, July 29, 2003 1:07 PM CDT

Jake's Grandparents (Mark's Mom and Dad) drove down from North Carolina to visit us and we are having the nicest time. Jake loves to hang out with his Grandbuddy Bill and Grandma Trish. He has been playing so much and so actively with them every day that he has been more tired and he has actually been sleeping in until 7:00am every morning. This may not seem like sleeping in to most of you but my little bear is usually a 6:00-6:15am riser, like clockwork..no matter what.

We went to a LUAU on Sunday after church and had a wonderful time. They had a rock climbing wall and a huge waterslide that Jake absolutely loved. It was nice but HOT out. It felt like it was 100 degrees and it may have actually been that hot.

Now for some (absolutely fabulous) Protocel news:

I currently know of over 15 children with diffuse pontine gliomas who are using Protocel. I am meeting more and more every day. Many of them are doing very well and having great results. Others are not doing as well but it is like anything else...it is not 100 percent but there is no reason to not at least try it.

When we first started Protocel we searched desperately for someone with the same type of cancer as Jake who had used it. This search was only for our own peace of mind but from what I have seen, psychologically, everyone who starts pcell wants to know that it has worked for their particular type of cancer. It just makes the journey easier. Anyway, we were never able to find one and we asumed that Jake was the first child with a brainstem tumor to try it. This assumption turned out to be completely wrong. One of the other parents that I know who is using protocel for his childs dpg contacted me the other day and said he recently found a man whose daughter had been diagnosed with a diffuse pontine glioma in 1999 when she was just 16 months old. Because she was so young they could not do radiation on her and the family declined chemotherapy so the doctors gave her a shunt to correct her hydrocephalus and basically sent the little girl home to die. Well, she absloutely did not die and is still here and doing well just like any other 5 year old. In fact, she is completely cancer free. What do you think her father attributes her success to? That's correct...cancell/protocel JVS-23!! I was so excited to hear this because it simply reconfirms, yet again, that Jake and so many others like him truly have a chance at a long, healthy life. That is something that I love to be reminded of by news like that.

Blessings to you all,

Susan

Monday, July 21, 2003 7:48 PM CDT

Okay first things first. Thank you to everyone who takes the time to actually sign the guestbook. We really do enjoy reading them. There were so many nice entries from people about how much they love Jake's firetruck bed in the picture. I have to let you all know that it is not Jake's bed. It is Bree's brothers bed. I know...it really is the cutest and Jake loves it too. It actually has a siren and the lights work.

I have not added an entry in a while because Jake and I were both very sick with horrible colds. We were home and bored and cooped up for over 2 weeks. In the past Jake has a couple of times complained about going to school and cried and asked to stay home. I usuallly give in and let him stay home but let me tell you..I think being home for two weeks straight cooped up with me has cured him of that. He was so excited to go to school and play with friends this morning. I have never seen a happier boy.

I am very pleased (and sad) to announce that my little boy is growing up fast. I have noticed that when he brings home his papers and artwork from school he has been signing them differently. He used to just write JAKE...now he has been signing his name as BIG JAKE. When I asked him why he told me "Little Jake has grown up." I guess he has. He has asked that I no longer refer to him as Jakey Bear but as Big Jake. Big Jake it is. It reminds me of when I was little and I changed my name to BJ. At that time it was very "in" to have your name printed on the back of your tee shirts and I had mine all imprinted with BJ. I had a crush on BJ from the t.v. show BJ and the Bear (Greg Evigan). Okay now I feel old. For those of you wondering, I was in grade school at the time.

Now for some Protocel News: CHRIS KIRBY is a 13 year old boy who was diagnosed with a suspected DNET in 1996. He has had 2 surgeries during that time to remove the tumors but no other treatment. He began Protocel in February and is also having wonderful results. Please take the time to go by his site and leave a guestbook entry.

I guess that is it for today.

With Love,

Susan

Tuesday, July 8, 2003 3:13 PM CDT

Jake and I went to the Zoo with his girlfriend Bree and her mom Heather the other day and we had the best time. (She is the little girl in the new picture...now you can see why Jake wants to marry her, she is so cute!!) It was a little hot but we were able to cool off in the end. The zoo has a new fountain at the entrance where the kids can wear their bathing suits and run through it. The water comes from about 100 different holes in the ground and it is in the shape of a gigantic circle with a huge gusher in the middle. Jake and Bree ran around in this fountain for a good hour and had a blast. They had the biggest smiles on their faces and they were enjoying every second of it.

Toward the end of our stay I noticed some kind of a rukus going on in the center of the circle. There were about 15 kids of all ages surrounding the center and getting agitated at the child who had chosen to seat himself directly over the big "gusher" in the center and take a rest. The child who was sitting on that part of the fountain was cutting off the water so the rest of the children could not play. It took me about 3 minutes to realize that the child who was "resting" in the center was my son. I calmly walked over to the edge of the fountain and tried to coax Jake out..no luck. I tried everything. I finally started to get a little worried about his safety when I noticed that the crowd was beginning to get very agitated. There were about 15 children screaming at him and he was screaming back. When fists began to fly I decided I had to go in. Now remember, he is in the center of a huge fountain of spraying water with 100 jets. Mommy was NOT in a bathing suit. Needless to say I was not very happy when he did not immediately stand up and run out of the fountain with me. He finally made his exit and the children cheered. We were both soaking wet but we had a great time. I spent some time explaining to him that sitting there was not so fair because it cut off the water for the rest of the children to play in and that is why the kids were getting so angry. When I asked him why he did it he summed it up pretty well...it was comfortable. He has been asking to go back ever since. I will just have to remember to wear my bathing suit also next time.

I hope everyone is having a wonderful summer and enjoying every second with their children. Remember to love everything about them.

Sunday, July 6, 2003 2:27 PM CDT

The other day I was out shopping with my girlfriend Heather and she said she ran into the mother of one of Jakes old classmates where he went to school when he was diagnosed. She said one of the first things the woman asked her was, “How is Susan? Did her little boy die?” That would seem like kind of an awful question to ask but remember, every doctor we spoke to and sent our scans to said Jake would never make it a year. He was...the little boy who was going to die, and everyone knew it. It just..was. (Let me take this opportunity to again say thank you, thank you, thank you Marnie for finding Protocel for us.) I very vividly remember hearing his little friends asking him if he was going to die and telling him they did not want him to die, etc. One mother even explained it to her children that Jake had a “disease” in his head. . Disease? Give me a break! How contagious does that sound? Mommies, can we use our brains? The things I overheard coming from that group of children was just wonderful. Ugh, it was so horrible back then.

Because of this when we moved over an hour north we told very few people about our situation. It is just a much better way to live. My son is just “Jake” in our new neighborhood. He is not “Jake, the little boy with the brain tumor.” I know we can not make the tumor go away by pretending it does not exist. However, we can choose to live our lives as normally as we possibly can. I do not want people, teachers, children etc. treating him any differently than anyone else. I want him to be as normal as possible. It is because we have not told anyone that I was so shocked when I picked him up from summer camp and one of the teachers pulled me aside and asked me if he has “something wrong with him.” My mind immediately began to race…oh no, did he vomit, has he been tripping, is he slurring? None of the above. Apparently one of my son’s favorite things to talk about at school is his Disney Make-A-Wish trip. I had no idea he has been outing himself to everyone we know. My talkative little 4 year old. (Although I must admit it was one of most wonderful vacations we have ever had.) So I had to tell about Jake's brain tumor. I also told her we would like to keep it as quiet as possible but I am not counting on that to happen. I am assuming word will get around. I just have to hope and assume it will be a completely different situation now because Jake looks so normal and we are not in the “crisis” like we were when he was diagnosed. I hope the other children never know or care.

With Love,

Susan

Tuesday, July 1, 2003 7:57 AM CDT

In reading the guestbook messages it was a landslide vote in favor of allowing Jake to have a purple room. Some even suggested a lavender room instead. At first I though, maybe they are right..what does it really matter? However, when I took a closer look I noticed that everyone who voted for the purple had GIRLS. The people who voted for the sports themed blue room had BOYS. Let me tell you a little story from our past........

When Jake first started riding a bike we used a hand me down from our next door neighbor. It was a great bike and Jake loved it. We rode it all over and had so much fun with it. There was one problem with it though....it was...pink and purple. The neighbor who had outgrown it was a little girl. Initially I did not care. Why would I, it worked fine and he was only 18 months old. We put many miles on that bike riding around our neighborhood. If someone else cared that was their own insecurity. That was my view. My view soon changed....The problems began when we started taking the bike to the park for rides. Keep in mind Jake is my only child..I had no idea how inquisitive and sometimes downright mean children can be to other children. The first time we took the bike to the park other children began coming over to us and saying things like "is he a girl? He does not look like a girl, why is his bike pink? and teasing, Look at the little girl riding her pink bike." He of course had no idea what the older kids were saying but I was traumatized.

As I am sure you can guess Jake got a new bike that weekend. The problem was..he had grown very attached to his pink bike and did not like the new silver bike. He would cry every time I tried to get him to ride it. It was such a fight that I gave up and let him ride the pink bike around the neighborhood and the silver bike was our "park bike."

The moral of the story...no purple room.

With Love,
Susan

Friday, June 27, 2003 8:20 PM CDT

When Jake was diagnosed almost 20 months ago we were living in Delray Beach about 1 hour and 15 minutes from Marks work. Immediately after diagnosis we decided this was an unacceptable waste of time that would be better spent together and we began looking for houses closer to Mark's office. We found an area we loved and are currently building a house which is only 20 minutes from his office.

We are at the stage where we are picking out the little things like paint color, carpet etc. We thought it would be so much fun to include Jake in this process and allow him to help decorate his room. In hindsight this was probably not such a good idea. The main reason it was not a good idea is because his favorite color is purple. He is now very convinced that he wants a purple room. Purple walls and carpeting. I thought I would change the background to purple so you could all really get the feeling of what my son's purple walls and carpeting would look like.

The "normal" parent in me says "no way, absolutely not!!" But I have to be honest at the same time the parent of a child with a brain tumor side of me wants to say "you want a purple room? Done!" I have the feeling that my guilt will not win out with this one and we will have a little boy blue room with a sports theme (which he will absolutely love).

Now for a little Protocel news... Zachary Finestone just had the most wonderful results on his scans. Make sure you go to his site and read his dad's post from today(June 27).

Also, Jake's friend DYLAN is being given a spaghetti dinner fundraiser to help raise funds for a handicap van. Please take the time to go if you live in the area. If not at least take the time to go to his site and wish him well.


With Love,

Susan

Thursday, June 19, 2003 2:50 PM CDT

We are having the best summer. Well, it would be a little better if it did not rain so bad everyday. But that is Florida in the summer.

We went to the city pool the other day with the kids accross the street and had the best time. It was a pool that reminded me of my childhood. It had 2 regular diving boards and one of those huge platforms for diving like they use in the olympics. It is like jumping off a building. Jake had the best time watching all of the kids jump, screaming, off the platforms.

He never ceases to amaze me...when we got there my big 4 year old did not even want to go "swimming"...he made a beeline for the diving boards and got in line. He then proceeded to spend the next 2 1/2 hours jumping off the divingboards into 17 feet of water!! He must have jumped off at least 300 times. I was dizzy just watching him. My little "Nemo." I just love seeing him so happy. I have a feeling it is something we will be doing many times throughout the rest of the summer.

I hope you all are having a fabulous summer!!

With Love,
Susan

Friday, June 13, 2003 3:18 PM CDT

Yes, my son has an inoperable brain tumor. However I must admit that we don't usually live our lives like he does. What does that mean anyway?? How should we live our lives any differently? What I mean is, I know my sons diagnosis but we usually don't walk around dwelling on it and thinking about it all the time. We just...live. Yes I thank God each day for keeping my son healthy and we live a little more "in the moment" than we used to, but for the most part we just live "normally." We are not in that place any more that we were in when Jake was first diagnosed. Thank goodness. In fact, many of our new friends (most of our new friends) would be so shocked to even know what Jake has.

This little bubble of happiness was temporarily shattered last week when I attended the viewing of little Jalen King. It was so sad. I was there saying goodbye to Jalen and I was able to meet a few people that I have only really gotten to know "online." As I was sitting there talking to the people I just started thinking "how did this happen to our life?" I have always tried very hard to stay away from the why us mentality. It does no good psychologically and I think life is just better when you don't fall into it. But sitting there at the funeral home looking around at my new friends I realized that my little circle consisted of my friend Terri who drove me. She lost her 2 y.o son to a medullablastoma 10 years ago. Ruthie was there. She lost her 5 y.o. son SETH to leukemia recently. My friend Rebecca was there. Her son ZACHARY is dealing with relapsed neruoblastoma. And I met Kathy who recently lost her son ROBERT. Childhood cancer is horrible, horrible, horrible and while I might not dwell upon the why us?...I do sometimes miss my old life. The one where I never even thought about cancer unless I was watching discovery health on T.V. I sometimes wish I could visit that life for just one day. That would be a day I would never again take for granted like I used to.

With Love,

Susan

Sunday, June 8, 2003 9:20 PM CDT

I am finally getting around to sit down and do a real update. I feel like I have been so busy these last couple of weeks but at the same time when I sit and try to think about what I have been so busy doing I can not come up with anything. What a mystery.

Now about our wonderful trip to Orlando. We had this trip planned with Marks sisters family for about 6 months. They drove down to Orlando and we met them there for a week. It was great. Jake had the best time with his cousins..he truly loves spending time with them. We got there a day early and spent the day at Give Kids the World (make a wish village). I have to say that Jake really loves that place better than the theme parks themselves. When he asks to go to "Disney" he is really asking to go to GKTW.

The parks were so crowded that weekend that we spent the weekend at the pool playing and went to the parks during the week. We did not spend too much time at the parks with the rest of the family beause the kids are different enough in age that they wanted to do different things. Jake is still a little wary of the rides and really prefers the "hands on exhibits." His absolute favorite is the Curious George Ball Factory at Universal. He wants to stay there for hours and we went there every day. He also did not like the "indoor rides" like dinosaur, men in black, e.t. as much as he liked the rollercoaster rides. I think the other rides look a little to real for him yet. They are dark and smoky inside with things popping up all around.

I have to say it was a great time and a vacation that was needed.

With Love,
Susan

Thursday, June 5, 2003 8:27 AM CDT

What a horrible week. There are two sets of parents who have this week experienced what no parents should ever have to experience. Please take the time to say a prayer for these special little angels that their journey to heaven will be a wonderful one. Also, please pray that their parents find the strength necessary to overcome their pain. Their hearts are surely broken to pieces.

Little Rossy is a 6 y.o. boy who lost his battle with a diffuse pontine glioma. His mom Leslee is a wonderful woman who needs your prayers.

Little Jalen fought a hard fight against leukemia and lost his battle June 3, 2003. Please take the time to go to his website and sign the guestbook to let his mother know you are praying for her and her little angel.

http://www.caringbridge.org/fl/jalen


With Love,
Susan

Friday, May 30, 2003 8:03 AM CDT

Yes we are fine and healthy!!! We went to orlando for a week and I forgot to update the webpage before we left..sorry if I frightened anyone. That being said, I am so unorgainzed and tired from the trip that I will have to update later.

Susan

Saturday, May 17, 2003 5:11 PM CDT

Last October we moved 1 hour north to a city called Jupiter to be closer to Marks work. We love where we are now but we also miss our old friends very much. As you know from past journals Jake has been having some "issues" at school. (when he tantrums now he tells me he is "issuing.") He has been home with me for so long he is not really used to being around a large group of other children and it has been a real transition for him. Last week he did much better so on Friday afternoon I picked him up from school and as a special treat for doing so well we went to Boca Raton to see our old friends. We had a wonderful time. We went to gymnastics open gym at his old gymnastics school with all of his old friends. He loved it!

Afterwards we went to Jake's old girlfriends house. Her name is Breanne Hunter Roenick Lawson _____ and according to them...they will be getting married. She already has her sequined red Dorothy shoes picked out that she is going to wear. Her mom says she can not get married until she is 18 years old. I say he can not get married until he finishes college (university of north carolina class of 2023). We will see what happens.

God Bless,
Susan

Monday, May 12, 2003 8:16 AM CDT

What a great Mothers Day! Jake made me several cards and planted me a beautiful flower in a handmade pot that he made in preschool. Mark was actually home all day on Sunday and we loved it. We got to spend an entire day with him, yeah!!

Our big family activity of the day was...bowling. I am always reading on Zach Finestones site about how much fun bowling is so we had to try it. It was great but I think Jake is a little too young for it still. He was so excited to go and was singing songs about bowling the entire drive there. However, I think the idea of bowling was a little better for him than the act itself. He bowled about 3 frames and then began saying "is bowling over yet?", after each frame he bowled from then on.

Hope everyone had a wonderful Mothers Day.

With Love,
Susan

Friday, May 9, 2003 9:48 AM CDT

Happy Birthday to you!
Happy Birthday to you!
Happy Birthday Dear Daddy!
Happy Birthday to you!

This is a Happy Birthday wish to the best Daddy in the whole wide world.

We love you.

Susan and Jakey Bear

Thursday, May 8, 2003 7:31 AM CDT

Alright, alright I will admit it..the virus was horrible. Yes, I did end up getting it. UGH!

In looking back at the whole week I noticed the most amazing thing. Jake did not get any tumor symptoms at all when he was sick. This is truly amazing. Before whenever he was tired or sick his "symptoms" became more evident. He might have a stiffer eyelid, his eye might not close all the way when he was asleep, or maybe his balance would be a little more off. However, this time he did not show any symptoms at all.

Warmly,
Susan

Sunday, May 4, 2003 7:45 PM CDT

Boy did we have a rough week. Jake woke up Thursday morning complaining that his belly hurt. At around 8:30am he began to vomit. This would be a horrible thing for any parent to see their child go through. No parent likes to see their child sick. For the parents of healthy children it is basically a "normal, expected occurrence" once in a while. However, since morning vomiting was one of the things Jake did when he had hydrocephalus I was absolutely scared to death. If he has hydrocephalus it would only be because he has a blockage, which would mean the tumor is growing. For the parent of a child with a brain tumor a vomit is never... "just a vomit," a fall is never... "just a fall."

I immediately called his oncologist and asked about the likelihood of hydrocephalus and he was very helpful. We went over all the symptoms of tumor and Jake has none. So we were in a wait and see if symptoms appear mode all weekend. Everyone was on a red alert and it was very stressful to say the least. Jake did get more virus like symptoms later. But I was still scared. Then the best thing in the world happened......Mark woke up Sunday morning and vomited!! He has been vomiting all day!! I know that at this particular time Mark is not nearly as excited about this as I am and he does not really agree with me that it is such a fabulous thing, but it is. Jake just had the flu.

(Mark has made it very clear to me that when I get the symptoms next..when, not if..I will not be as excited)lol

I try to never take any moments with Jake for granted but times like this again make me realize how much of a gift each and every day is.

God Bless,

Susan

Wednesday, April 30, 2003 2:01 PM CDT

Jake is much better and his cough is basically gone. He also has his energy back. However, I don't know if anyone has had any experience with nebulizers and albuterol,we have not. We had no idea what to expect and no one mentioned side effects. We thought we would just give him this breathing treatment 4x a day and he would be all better. Oh how wrong we were! We had no idea that the medicine would basically make Jake a crazy man! This stuff makes him bounce off the walls with energy. I did not figure it out at first, I thought he was just more energetic because he was feeling better. I began to notice that exactly 1 hour after his treatment he becomes basically unable to sit still.

Since being home sick Jake has been asking to go to school every day. Today I sent him to school today without even thinking about the medicine. When I went to pick him up the teacher asked if she could have a little "talk with me." My little guy did NOT have a very good day today. Apparently it all started when Jake dropped a cracker on the floor at lunch and the teacher put it in the garbage. It was only downhill from there. UGH!! My first parent teacher talk. If he is out of solitary confinement we will see how he does on Friday. Hopefully better.


Make sure to look at Zachary Finestone's Site. He had a great report on his last cancer marker test.

Dylan had a good result with his latest MRI as well.

Friday, April 25, 2003 5:25 PM CDT

My poor Bear (aka Jake). He caught a cold a couple of weeks ago and recovered quite easily. Then, a day before his Grandparents arrived for a visit, he began to get a cough. It got worse and worse. I feel so bad for him because he loves his his Grandaddy Bill and Grandma Trish so much and he was not feeling well while they were here. He is still sad that they did not go to Chuck-e-Cheese' together.

Well, we went to the doctor yesterday and my little guy has "bronchio-pneumonia" in his left lung. He is on Zithromax and a nebulizer. He feels fine but is coughing up a storm. He is so stir crazy and misses his friends so much. I am completely running out of things to keep him entertained.

Monday, April 21, 2003 8:41 AM CDT