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June 29, 2005

Doing A Little Bit Better

Well Noah is doing somewhat better.  His feeding tube went back in yesterday morning but not much nourishment is going into it because Noah has told Lara that even makes him too sick.  Noah went to see Dr. Cohen yesterday and his counts were still up high enough that he could still be out in public.  His weight has dropped back down to thirty-seven pounds but that was to be expected since he hasn't been able to eat or keep anything in his tummy.  The advantage of his feeding tube is that his medication for nausea can be administered through it and that has helped with his actually getting sick.

The sad news is that Nurse Marge will be leaving Dr. Cohen's office soon.  She has been taking care of Noah since the beginning and has formed a real bond with him.  I know that Noah will really miss her.  The other thing that Marge was concerned about was that it seems that Noah's broviac was getting infected.  He was put back on antibiotics and that should take care of that problem.  The message from Nurse Marge, however, was NO MORE swimming.  That's a bummer but at least Noah got to swim once this summer when he was feeling well. 

Yesterday morning Lara, Noah and Sarah went over to see their friends the Kingsleys and today Noah went to see his friend Barrett while Sarah was taking her nap.  He only stayed an hour today and poor Tracy had to deal with his getting sick but she said that she was a mom and it was no big deal.  How wonderful to have such great friends that just take such occurances in stride.

It seems as if Andy has to go to Chicago on a business trip next week beginning on Sunday through most of the week.  This means that Lara will be on her own for the first time and I hope it all goes smoothly.  Noah's counts will probably be down so she will be pretty confined with him at the house.

Lara asked Dr. Cohen when Noah would have to start round six of chemotherapy and he is really trying to get across to her that it's impossible to do any planning at this stage of the game.  In a perfect world it would be two weeks from Noah's completion of round five but it will all depend on how well Noah recovers from this last round.  His counts all have to be up high enough in order to tolerate another round.   The good thing is that round six will not have platinum and that is what takes such a huge toll on Noah.   

Noah was sleeping when I spoke to Lara earlier this afternoon and she had started a slow feeding while he slept.  I hope that it worked and he was able to tolerate it.  I would think that having some nutrition would help him feel better.  He must be so weak from not having any calories for so many days.  Malnutrition is always a threat.

Lara was hoping that Noah would be feeling better today but it seems that he's been about the same as yesterday.  Let's just hope that tomorrow is a much better day.  Keep everyone in your prayers but most especially our sweet little Noah.  He really needs to start feeling better very soon.

Much love,  Grandma

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June 29, 2005 | Permalink | Comments (5)

June 27, 2005

Not Feeling Too Well

Round five has been completed and Noah was released from the hospital yesterday.  This was a pretty rough round.  The chemicals used in this round cause extreme nausea and Noah is so thin once again that Lara is afraid that all the weight that Noah was able to gain has all been eliminated.  Noah was being given a narcotic in the hospital to help with the nausea but it made him so loopy that Lara debated if it was worth it or not.  He can only be given this medication when he's in the hospital so he's not having it administered now that he's home.  The other anti-nausea medications used in the past seem to be worthless this time.  He's really not able to keep anything down.  The thing that is even more disheartening is that he's hungry but just can't bring himself to eat.  The feeding tube has been done away with for fear that it will just come up as well.  Lara has told Noah that the feeding tube has to be put back in and Noah has agreed to having it done.  Let's just hope that it works this time again.  He's just mostly lying in his bed quietly and is really pretty miserable.  Lara said she has recepticles in every part of the house just in case.

Sorry that I haven't updated the journal more recently but it's hard to come to grips with Noah being so sick again.  It's just so difficult to accept that he's so sick again after he was feeling so well.  The side effects from chemotherapy are hard to tolerate for both Noah and for those who love him and have to watch him go through all of it once again.  My heart really goes out to Lara and Andy.  I can' imagine how hard this is for them.

It seems that there has been another change in plans and that it has been decided that another round of chemo will be necessary in order to follow Noah's protocol that has been established by Sloan Kettering.  Dr. Cohen is pretty well convinced that Noah has no evidence of disease but Neuroblastoma is so tricky that it's felt that following protocol is really the best option.

Auntie and Baby Sean have left the Nelson household and are back in California.  Having Brigit with them these past few months was a great help to Lara and Andy.  It's great that all the Nelsons live so close by and  are willing and able to pick up the slack.  Sarah spent both Saturday and Sunday nights with Grandma Georgia and Grampa.   Aunt Judy is visiting from the mid-west and she is always ready to help.  All of Lara and Andy's wonderful friends and neighbors are always willing to help out whenever they can as well.  So I'm sure that Brigit has left them in very good hands.

There are still months ahead of more medical procedures and many decisions to be made.   Prayers are still what are needed to help both Noah and all of the family to help them in what needs to be done in the following months. 

There's really no way to determine what the schedule will be but plans will probably be changed once again.  Everything will be determined on how soon Noah recovers from this last round and when he will start the sixth round.  Lara and Andy are still hoping to join the entire Nelson family for a couple of days of their vacation but there's no way to determine at this point if that will come to fruition.  At least Sarah will be joining them for sure.  They are still hoping to go to Chicago for the Neroblastoma conference but who will be going will not be known until the date draws near.  Either Lara or Andy will go but who else may get to go won't be determined for awhile.

So that's pretty much what has been going on with Noah.  His hospital stays don't seem to be nearly as positive for him as they once were.  The adventure is gone and the monotony of being there has gotten to be way too routine.  The nurses can't even entice him to the playroom like they once could.  I think that Noah has figured out that life at home with his friends and family is a much better option.   He has a lot more hospital time ahead of him and I only hope that he doesn't develop too much disdain for his stays.  It's so important to stay positive but it's really getting hard to find being in the hospital at all interesting.  I know Lara, too, was extremely happy to come home yesterday.  It's so confining to be in such a small shared space.   

I hope that I can report very soon that Noah is feeling better and that's what my hope is for the next journal.  I will try to be more diligent in keeping you updated.  Please keep all of us in your prayers.

With much love,  Grandma

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June 27, 2005 | Permalink | Comments (10)

June 23, 2005

It's Back to Phoenix Children's

Today began round five of chemotherapy.  It's all becoming all too familiar.  I spoke to Lara earlier today and they were all settled in and Noah was beginning to get to know some of the new patients that have now been admitted at this time as well.  He met a new little pal who was as interested in video games as Noah is.  What a great source of entertainment for kids confined to a hospital room.

Noah has spent the last week since his birthday simply living as normal of a life as possible.  He spent quite a bit of time playing with his good buddies from school and from the old and new neighborhoods.  He was able to spend Father's Day with Grampa at the Nelson homestead.  Noah was in the pool when he was doing his usual best of not getting his broviac wet but it didn't quite work this time.  You guessed it.  He fell in.  Lara and Andy decided that whatever damage was done was done and let him swim for about a half an hour or so.  Noah loved it.  He's such a good swimmer.  Lara and Andy were glad to see that he hadn't forgotten how to swim since last summer.  It meant an immediate dressing change for his broviac but it was worth it.  I'm happy to report that there were no terrible consequences and Noah once again had a good day.

Having this time off was very beneficial for Lara because it allowed her to do an incredible amount of research on what the next steps for Noah should be.  The one decision that has been made and if Noah has recovered enough from this round of chemo is that Lara, Andy and Noah will be going to Chicago for the Nueroblastoma conference.  There are parents coming from all over the country to compare notes and to hear guest speakers who are authorities on the subject.

Hopefully, they will get a few days away before they go to Chicago.  The Nelsons are all gathering for a family vacation and the Andy Nelsons are hoping to join them for a few days before they go to Chicago.  Once again, I'm asking for prayers that all goes smoothly this time and that Noah will recover quickly so that they can follow through with their plans.

Sorry that I haven't updated you before now but there really wasn't much to report.  I will try to update a bit more often now that Noah is back in the hospital.  Check out the new pictures showing Noah and Sarah changing the dressing on Noah's little doll that he got when he first went into the hospital that has tubies just like he has.

Brigit is scheduled to come home this Sunday so her time in Arizona is coming to an end.  Lara and her family will miss her but are grateful for making their transition into the world of pediatric cancer a bit easier.  Lara and Andy were quick learners and have mastered all that needs to be done now.   

Much love,  Grandma

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June 23, 2005 | Permalink | Comments (10)

June 16, 2005

A Change of Plans

Today Noah turned five and his day began with a trip once again to see Dr. Cohen and it was determined that his counts are not high enough to begin round five of chemo tomorrow.  So, no trip to Phoenix Children's tomorrow.  Both his platelets and red counts are down.  It is now planned that Noah will not be going back for chemo until next Wednesday. 

I talked to Noah this morning to wish him a Happy Birthday and he sounded just great.  He was really looking forward to his day.  He was going to have lunch with a few friends and then go on an outing for the afternoon with Grandma and Grandpa Nelson along with his cousin Hannah.  This was going to end with another birthday cake at his grandparents home.

I spoke to Lara this evening and Noah enjoyed every minute of his day.   I'm so happy that he was feeling well on his birthday and could really enjoy the day.  Lara said that he was pretty tired by bedtime but this time it was because he was having such a good time and not from a medical procedure.

So there probably won't be too much to report over the next week.  Lara will just have to figure out how to keep all of that new found energy contained.  Noah seems to be going constantly and is making up for all the time he lost over the last few months.  Lara always seems to come up with good ideas on how to keep the kids' days filled.  Hopefully, the week will be filled with seeing friends and having fun playing with them.

I'll keep you updated if anything changes but that's the plan for now.

Much love,  Grandma

June 16, 2005 | Permalink | Comments (14)

June 14, 2005

Neuroblastoma Funding Spirit

Hey There Soon to Be Big 5 year old:

I was happy to hear that when you were riding home in the car on Sunday and your dad said that was a pretty good party and you had pretty cool friends, you corrected him and told him that, "NO that was a GREAT party and you have GREAT friends."  Your surprise guest of Darth Vader for all your fellow jedi party-goers was a HUGE hit.  Uncle Jamie drew a crowd from beyond your Birthday party into the game room and sent no kids screaming in fright.

Before taking Uncle Jamie and Grandma Kathy to the airport after your party, we were all heading out to go to Los Olivos when dinner with a smile arrived. The neighbors Gene and Jill down the way surprised us with dinner and a cake for you and your dad.  It was good that you two were able to sing "Happy B-Day" and blow out candles together, because Dad doesn't get back from a work trip until late Thursday night.  These past few days you have been keeping us busy and mom has even stated you have been a pistol.  You have a lot of spunk in you and perhaps the chemo is bringing out the lion in you.  This morning we all packed up and headed out to an outdoor mall so mom and I could have some Starbucks while you and Sarah could run around like wild animals before it got too hot out.   We then ventured to a bookstore to look around.  We were there no more than a few minutes before I found the story of Alex's Lemonade in a book and a lemonade stand kit.  We all looked at it and agreed it was super cool.  We read the story and mom even got teary eyed.  Sarah kept on saying the girl with the BIG blue eyes was her, but mom explained that it was actually about another brave and sick little girl like you, and her name was Alex.  I copied pictures and description of what we saw at the store today and had to get, so when you read this years from now you can easily remember today.

"Clip_image001Using rhymes and bright, whimsical pictures, "Alex and the Amazing Lemonade Stand" tells the sweet, true story of a little girl named Alex.

Faced with a problem, she comes up with a plan --- she will sell lemonade from a lemonade stand.Clip_image002_1

This story shows how the small act of one person can have a positive impact on many people."

Feel free to visit her website at http://www.alexslemonade.com

Tomorrow is your Birthday and I am sure we will all have BIG, BIG, plans for a fun day after you visit Dr. Cohen and Nurse Marge in the morning while maybe Sarah, Sean and I go to the library for a little "Shaking, Rattling and Rolling" with some silly librarians and musical instruments. Peter Piper Pizza, Arizona Science Center with Grandma, Grandpa and cousin Hannah followed by more birthday cake and ice cream; just what mom and I need so we can gain all the weight you lose during your treatments.  Good news is I heard your weight is up again to 41 lbs, so I guess all these tasty treats is working for you too.

Before I go sign off to endulge in one of your scrumptious B-Day cakes, I thought I should let you know what I was up to when you, mom and dad abrubtly headed to the hospital for late night platelets a week or so ago.  I felt helpless and hopeless, so I frantically ordered some "Lunch For Life Gear" so I could deck myself and my car out with some not Wildcat spirit, but rather some Neuroblastoma Funding Spirit.

I know some of your fans had wished they could have made it to your cool "Fore Noah" golf tournament to help fund Neuroblastoma research and was hoping there were other ways to support the cause.  I like to think that having a Lemonade Stand or supporting "Lunch for Life" may be the ticket.  Lunch for Life's Fact Sheet on Neuroblastoma is all it took to fill up my online shopping cart.  I had to have all the gear.  The good news is Uncle Jamie told me he is about a week behind on reading the journal entries and the credit card bill doesn't come til the end of the month, which means let's keep on celebrating your Birthday and all your energy with lots of cheap thrills.

I have copied the Fact Sheet below in case others are interested in Funding Statistics.

Alright, good night and sweet dreams.  Can't wait to be able to call you the coolest 5 year old I know. PS If you have trouble reading my lengthy love letter, click on "continue reading"; then if your have trouble reading it in full screen, simply hit the refresh button and it should be there.

Lots of Love:


It’s more common than you think! 


Childhood Cancer


  • One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S.are diagnosed with cancer each year, of those, over 2300 will die. 1

  • Cancer is the leading cause of death from disease in children between the ages of 1 and 19.1

  • In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday. The incidence of childhood cancer has increased every year for the last 25 years. 1

  • Neuroblastoma is the most common cancer found in infants, almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors.1

  • There is no known cause or cure for neuroblastoma.1

  • Neuroblastoma accounts for 97% of the cancers of the Sympathetic Nervous System.1

  • Neuroblastoma accounts for 14% of all cancers in children younger than five years of age. 1

It’s deadlier than you know! 

Childhood Cancer


  • Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread at diagnosis.1

  • Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancer have proven so resistant to treatment that, in spite of research, a cure is illusive.1

  • Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. The average age at diagnosis is two years old.1

  • Neuroblastoma is an aggressive solid tumor cancer that strikes mainly young children and has less than a 30% chance of survival when evidence at diagnosis shows that the disease has spread.1

And, it doesnt have the research funding to get any better! 

Childhood Cancer


  • The largest children’s oncology group in North America which supports the clinical and biological research at over 200 participating institutions and treats about 90% of the children with received less than half of its requested budget from the federal government this year.2

  • The National Cancer Institute’s (NCI) federal budget for 2003 was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3% .2

  • 1  Source: American Cancer Society  and National Cancer Institute SEER Report
  • 2  Source: National Childhood Cancer Foundation Annual Report
  • 3  Source: CureSearch Case Statement and Funding Plan, Fiscal 2004

  • Neuroblastoma accounts for 7-10% of all childhood cancers and well over 15% of the deaths;  and yet neuroblastoma is only designated to receive 5% of the research dollars from a national pediatric cancer fundraising initiative.3

  • For every dollar received through federal grants and private donations by this very organization less than $.03 goes towards funding neuroblastoma research grants, awards, and fellowships.3

  • Right Now this second, somewhere in America there are 7 children fighting for their lives who won't live through the day.  We can do better! LUNCH FOR LIFE

June 14, 2005 | Permalink | Comments (16)

June 15 is almost here

Sorry I have been derilict with my journal duties but once again my flight home was delayed on Sunday night and I didn't get home until 1:30 A.M.  I was really tired last night and couldn't find the energy to do the journal.   I think that I might have to rethink these late flight times for my return home.  It seems as if they are always running late.  At least there wasn't any lost luggage this time.

I'm not really complaining though because my time spent in Arizona this past weekend was too wonderful to even mention a delay in flight time.  To see Noah so happy was just making my heart sing.  One of the great things about Noah is that he so appreciative for everything that is done for him.  He absolutely loved everything about his birthday celebration.  He really had a great time.  He was full of hugs and kisses the rest of the day.  I even got a Yoda hug when I was leaving.  He scrunched down and hugged my legs and told me that was a Yoda hug.  It was so appropriate since the whole day had a Star Wars theme going for it.

Noah saw his good old friend Dr. Cohen yesterday and his platelets are coming up but not high enough yet to start round five of chemo.  Andy decided that he would take a business trip this week since there was going to be a bit of a reprieve from Noah having to go back into the hospital.  He will be back on Thursday night and Noah should be ready to start round five on Thursday.  The good news is that Noah is almost up to forty-one pounds which is the most he has weighed since before his first round of chemo.  He still doesn't eat much but the feeding tube is really doing the trick.  I can't get over how much he has grown over the last few months.  He is really getting tall.  The growth spurt isn't helping with the weight but he's looking the best I have seen him in a very long time. 

I can't help remembering how it seems like just yesterday and not five years ago that Andy put Noah in my arms when he was just a few minutes old.  I will never forget how those big eyes were looking up at me.  I knew at that very moment that Noah and I were destined to be great friends.  I keep thinking about how much Noah has added to my life in these past five years.

Lara just called to tell me that BrIgit has posted a journal and I apologize if we have repeated any information but I just wanted to wish Noah the best birthday ever.  Once again I will ask for your prayers for Noah when he begins his chemotherapy on Thursday.  Pray that it does its job and kills all of those lingering Nueroblastoma cells and that Noah experiences as few side effects as possible.

With much love,  Grandma

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June 14, 2005 | Permalink | Comments (7)

June 11, 2005

It's Almost Birthday Time

I'm back in Arizona and in Grandma heaven once again.  This time all three grandchildren are here and it just doesn't get much better than this.  Lara and Brigit left at eight thirty this morning to begin their day at the spa.  The day was a Mother's Day gift from their husbands.  This is the most time that Lara has had away from Noah since he became ill.  I hope that she's been able to refuel her jets because I'm not sure there will be much time for such activities for a very long time.  Andy and Jamie joined Brigit and Lara at dinnertime and the four of them were able to go and celebrate Andy's birthday which is the same day as Noah's.

Uncle Jamie and I flew into Phoenix last night for the big birthday celebration taking place tomorrow.  It was originally thought that Noah would be back in the hospital on Monday for round five of chemo which would mean that Noah would be in the hospital on his actual birthday.  That has proven to be not the case in this ever changing world of Neuroblastoma treatment.  On Friday, Noah's counts weren't high enough to warrant beginning chemo on Monday.  Dr. Cohen will be out of town next week-end and he doesn't want Noah in the hospital when he's gone.  So, it's not certain when round five will begin.

There has even been talk that round six will be eliminated completely and a mini stem cell rescue will be done in place of that round.  It's an ever changing schedule and planning anything in any practical terms is an impossibility.  Lara wasn't even sure until Friday that Noah would be able to be out in public this weekend and that any birthday celebration would have to be canceled.  Thankfully things are working out and Noah doesn't have to be disappointed.  We all know how important a birthday is to someone turning five.

I think Noah is doing just great this week-end.  His energy is up and he looks really good.  His weight is up thanks to the beloved feeding tube.  He still only eats a few bites every now and then but the nutrition that he's getting is really helping with his weight.  He was almost at forty pounds on his last visit to the doctor's office on Friday.

It's getting late and the little ones are getting up early these days with the sun coming up so early so I will stop for now.  I won't be doing a journal tomorrow because I won't get back to the bay area until quite late tomorrow night.  I'm not sure what Auntie will be up to either but don't worry if you don't hear from us for a couple of days.  We will always keep you informed if there is any important news.

Much love,  Grandma

June 11, 2005 | Permalink | Comments (8)

June 09, 2005

Clown Act

My Lil’ Lion:

Well I thought I would drop you a note since it has been a few days. You have been visiting Dr. Cohen and nurse Marge lots this week and your counts were not as high as everyone would have liked them to have been earlier in the week.  The doctor educated us and told us platelets only last a week or so and based on your numbers, most likely those platelets you received late night on Sunday weren’t so fresh from the person who had donated them.  It could have been possible that they were a few days old when you received them and it also takes some time for you to be able to generate your own platelets after therapy. (I hope you remember to say thank you, thank you, for all those nice people who donate blood and platelets because for you it is like your Jedi fuel.)

Well our routine around here this week, if you can even say we have a routine, has been play, play, and play all day.  You have humored me lots with your Noah quotes.  Although you have been suffering from Cabin Fever and sometimes you get a little out of hand and one of us Adults has to tame the lion in you.  Nonetheless it has been good times, good times.  There has been a lot of energy in this house.  All three of you play hard and have been tiring me out and “Caffeine Free Auntie” has been joining mom and dad with Starbucks and C2s. Breeze_on_my_bald_head_1 It was not until this morning that your doctor with caution said you could as you would say, “catch some breeze on the bald head.” 

You have been able to play a little bit these past few days outdoors in the backyard, but when our sleepers are napping, you start to go stir crazy and I am practically doing handstands to entertain you.  You and Sarah have been ever so creative in the games you play.  Everything from a game you call, “Bookie” Bookie_game_2_1where you hop into Sean’s portable crib and play “Peek A Boo” with his cloth book.   He then laughs nonstop. You and Sarah have been running and chasing each other lots in the house.  If you aren’t running around you are being my little helpers helping take care of Baby Sean’s basic needs. 

Before naptime this afternoon, you even managed to convince Sarah to push you around in your toy cart,Box_car_3  as if you were a boxcar on some wild train ride. Last night you created a make-shift pool party in your kiddy pool out back.  Sarah and you would run on the grass and jump in.  You stayed clear of the big pool and had mom wrap you up with Saran wrap like your were deli meat to avoid a dressing change.  I then prepared what I thought was a fiesta of mini tacos, quesadillas and taquitos.  You were very polite and at least tried a bite of each, but responded that nothing really tastes good.

As you would say, all this playing has been some “hard work.”  You went to bed last night actually before the little ones.  You woke up this morning rested and ready to go. The Allen’s were gracious enough to have you over for a spontaneous visit this afternoon while your mom got her hair cut.  You had been begging and pleading to go to a friend’s house so this afternoon you were given an opportunity to see you pal Barrett.  The good news about your counts hopefully on the rise means we can have even more fun times ahead of us.  Grandma Kathy and Uncle Jamie arrive Friday evening for a weekend of Birthday celebration.  We are all so happy to celebrate you 5th Birthday with you.  Your real B-Day is June 15th, which is next Weds.  As you already know you share that special day with your Dad, your dad’s twin Aunt Adair and your dad’s dad, Grandpa.  Sometimes that day even happens to be Father’s Day.  Not this year though, that would be too much FUN for one day.

The good news about you feeling well and being homebound this week is you and mom have had time to help Sarah with potty-training and transitioning to a BIG girl bed.  Yesterday, Sean, Sarah and I went to the library and got lots of relevant reading material to encourage her to accomplish these big tasks.  You have joined in on the fun and you have your own sticker chart for every time you don’t give your parents a hard time about being “hooked up” to your pole for a feeding. Since I am a clown act and have managed to earn lots of Noah smiles this week, you have been even willing to give your mom a bit of a break too. Instead of you two being attached at the hip, she has been glued to her laptop.  She has been reading up on your protocol and looking at more opportunities to heal you.  The planner in her has been trying to figure what’s next? More chemotherapy, radiation, several months in Tucson for the stem cell transplant or dedicating a lot of time to a immunotherapy clinical trial at Sloan Kettering in NY.  Dad has been busy working this week but just told me that he is going for a bike ride this evening near the old house and he would say hi to it for all of us.  Mom and I will hit the spa on Saturday for some facials so we are ready for your Birthday party and so people don’t think the blemishes on my face are shingles you gave me.

The 3 TVs in the house were happy to hear that you are able to “go out in public” some in the next few days.  They have been working overtime lately. I am not sure what you will want to do tomorrow, but it is Friday and my guess is your sister will convince you that we have to go to the mall. Well mom and you are due home soon, so I better give this house a “lick and a promise” before you arrive so you don’t suspect I have been a net jockey all afternoon.

PS I can’t wait to see Uncle Jamie in the Darth Vader costume we bought for him.  Hopefully your sister Sarah will realize that its just him under the mask and not "run in place."


June 9, 2005 | Permalink | Comments (5)

June 06, 2005

Scooby, Scooby Doo, Where Are You?

My Lil Scrappy Dog:

Well I have not had a chance to write you since you have been a computer hog and happy to be back onto ABCFamily.com playing Jetix after you were whisked away last night to get some platelets.  You woke up and started to put that short order cook, you call mom to work.  Bacon and eggs before you were off to Dr. Cohen's office.  When you were there, he told you no going out in public and that your counts were still low, lower than we all had expected especially since you seemed to be getting somewhat of an appetite.  On your way back home from the Doctor's since you couldn't play with friends, you convinced mom to pick up your ultimate playmate, your sister Sarah early from her friend Payton's house.  You guys played lots and shared some Scooby Doo Mac N Cheese and turkey and crackers together for lunch. You also managed to get Sean excited with your informal dance party to one of Sarah's favorite songs about bees going buzz.  Now it is nap time and our "Super Sleepers" are already fast asleep.  You and mom are sharing the couch together and having Sponge Bob Square Pants humor the both of you.  This afternoon we will all be looking for some needed R and R, since only the two little ones got a good night's sleep last night.  Make room on the couch, I am coming to join you!


June 6, 2005 | Permalink | Comments (7)

June 05, 2005

Late Night Platelets

My Little Ewok:

Hey there, I was hoping to give you that Ewok Adventure DVD for your Birthday or at least have been able to have kept it hidden for more than a few hours.  I am sure glad Baby Sean told me to buy it today while we were out running errands.  I am hoping that you and mom are enjoying it in the back seat of the car while dad drives you to the hospital.  Although you have had tremendous energy today all things considered, we are all worried about your platelets and it probably is best that you pay a visit to Hotel de PCH and get yourself some new platelets.

Mom, dad and I were concerned how easily you were bruising today and moreso that your gums were bleeding and then the fact that your eyes were bloodshot and had a red spot on one of them.  We know that these can all be signs of low platelets and our worry was that you couldn't wait until tomorrow morning's doctor's appointment with Dr. Cohen. So off you went.

I hope you realize that we are not trying to be mean when we make these difficult decisions for you.  Dad today was concerned about you bruising your knee so he had to tell you to park your Big Wheel for the night and mom kept on looking in your mouth with a flashlight as if she now were your personal dental hygienist too.  Your top teeth were bleeding earlier and when she noticed that your bottom gums were then bleeding, she broke you away from ABCFamily.com to take you to the hospital.

You were confused by the sudden departure, and begged and pleaded with us to let you stay home, but the fear is that your blood can't clot on its own and stop the bleeding. I remember watching that Ewok Movie on TV when I was right about your age.  As a girl,  I thought the Ewoks looked cute and cudly almost as cute as Sarah's Care Bears and to me at the time they seemed way cooler than Boy Jedis. But now since I have spent time with a real Jedi named Noah, I sure am glad you have so many lightsabers, so that we can be cool and battle.

Well I just talked to mom and the good news is it looks like you don't have to check in to Hotel de PCH.  The Benadryl must have kicked in and I hear you are snoozing away while mom and dad decide on whether to watch Spider Man or Star Wars tonight in your treatment room.  They should be taking you back home to your own bed some time in the middle of the night.

I will be sure to make sure somebody posts a journal entry in the morning to give a more updated status of your whereabouts.  Until then, dream about ice cream, and lots of it.  The only thing I have seen you eat since I have been back is a whole vanilla ice cream cone this evening which you said tasted GOOD. (Thanks KK) Other than that you peck at your food like a bird.


June 5, 2005 | Permalink | Comments (7)