Tuesday, September 13, 2005

Just a quick update to let you know Jackson's blood counts are GREAT!!!!

WBC = 3.0
RBC = 3.64
HGB = 12.2
ANC = 2040 (What a magical number!)
Platelets = 277,000

It was so great to hear his ANC is well above 1000! Especially since I know a bunch of kids have been getting sick. Some more great news - today was the first day since school started for Jackson that he didn't cry when we left him in the morning at school. Hip, hip, horray!! I'm pretty sure the reason for no tears was the fact that he only has to go to school until noon today. Every Tuesday is minimum day, so that makes Jackson's really happy!

I forgot to add one other thing to Jackson's update on Friday -
September is Childhood Cancer Awareness Month and on Monday, September 26th Chili's will donate 100 rofits from all lunch and dinner sales to St. Judes Children's Research Hospital. Go to any local Chili's Restaurant in your area and join in! Also through Chili's, you can decorate a pepper in honor those battling cancer. (Lots of fun with the kids). I have posted the link at the bottom of the page under links.

Love,
Tiffany


Friday, September 9, 2005

We have been extremely busy since school began. I have been telling myself that I need to update Jackson’s CB page, but seem to need a couple extra hours in the day to accomplish it.

Jackson’s first day of school was Monday, August 29th. Jackson has had a rough time transitioning back to school. He has asked several times if Mrs. Lori can teach him at our home. Last week I had to pick him up two times early from school due to him not feeling well. He has done an awesome job this week hanging in there. He is at school from 8:15 am – 3 pm. These are very long days for him. Every morning, Jackson cries as we leave his classroom. Yesterday morning, Ms. Ritz told me he had a wonderful day on Wednesday. It was so good to hear!!!

Jackson told me last night the hardest part about being at school is that he doesn’t know what Faith and I are doing all day. He is use to being with us all day and really misses being home. I asked him if I told him each morning what I had planned if that would help him feel better. He agreed, so we’ll see how he does.

Last night was Back to School night at Jackson’s school. We spent time in Jackson’s classroom and got to know his teacher a little better and also what the expectations are for Jackson this year. Nanny and Pompa came over and had pizza and played baseball with Jackson and Faith while we were at Jackson’s school.

Since school has started back, we have been SO busy! It is great, but we ALL have been tired with our new schedules. Jackson had his first soccer game on Wednesday night. He did AWESOME! We were so proud of him and his team! They did great! Below are a couple of action shots I took during the game.


Group huddle before the game. Jackson is number 7.


Action shot of Jackson during the game.

Jackson also got his first hair cut since his hair came back in from his chemo. I couldn’t believe how good a simple hair cut could feel! He looks so cute!

Faith has started a ballet class on Wednesday mornings. She really enjoys it and is also keeping up with gymnastics. She misses her brother so much during the day. Luckily, Nanny is keeping her very busy! Tuesday mornings, Nanny takes Faith to the library for story time.

My training with Team in Training continues to go well. THANK YOU so much to everyone for your support! Each dollar makes a difference! If you would still like to make a donation to the Leukemia and Lymphoma Society, there is still plenty of time. The marathon is on October 23rd. For those of you that are in Sonoma County, I am having a fundraising evening at Cold Stone Creamery on East Cotati Avenue, on Tuesday, September 20th from 5 – 9 pm. 15 f all ice cream sold that evening will go to the Leukemia and Lymphoma Society. We are hoping for a HUGE turnout! Make sure to mention that you are there to support the Leukemia Society. Who doesn’t love ice cream?

We are also participating in Light the Night with the Leukemia and Lymphoma Society on Friday, September 3oth at 5: pm in downtown Santa Rosa. We have a team in honor of Jackson. (Jackson’s A.L.L. Stars) We are really hoping for a BIG turnout to honor Jackson! There is no cost to walk with our team. However, since it is a fundraising event, we are hoping to raise money for the Leukemia Society. With a $ 25.00 donation, you receive an illuminated balloon for the walk. With $ 100.00 raised, you receive a Light the Night t-shirt. $ 100.00 can be accomplished easily by asking friends, family and neighbors for a donation. The prizes get even better for larger amounts raised!

This is such an important event for us, especially since it is our first year honoring Jackson and celebrating his life! So many of our family and friends have been there for us this last year and we are really looking forward to seeing a lot of people out there and making it a memorable evening. Please email us if you have any questions. Please sign up for Jackson’s A.L.L. Star’s team online so we have an idea of how many people will be participating on Jackson’s team.

Jackson continues to feel good. Some days are better than others, but overall he is doing great. We will have Jackson’s blood counts checked on Monday to see where he is at. His next clinic appointment is September 20th.

Thanks for checking in on us. Please make sure you sign Jackson’s guestbook. The entries are always nice to read! Have a great weekend!

Love,
Tiffany

Friday, August 26, 2005 10:34 AM CDT

What a week we have had!

I don’t even know where to begin after the week we have had. I was able to talk to Jackson’s oncologist yesterday, once she was back in the bay area. She said they were still waiting on the final flow cytometry test results. However, she did let me know that she looked at Jackson’s marrow sample as well. She said it looked good, with clearly less than 5 ymphocytes, BUT there were a couple of questionable cells. And for leukemia kids, they do not like to see any questionable cells. This put another pit in my stomach. I had thought we in the clear. Each oncologist has their own interpretation we are discovering. The comforting thing is Jackson’s doctor knows him and his body. We left the conversation with our doctor saying she was confident that the flow cytometry test would come back fine.

Finally at 5:3o pm last night, we got the final results. NO LEUKEMIA!!! YEH!!!
Last night, we started Jackson’s oral chemo back at 50 osage until Sunday. We then will go back to clinic Monday afternoon, meet with Jackson’s oncologist and have his counts checked again. If his ANC has made a big jump to over 1000, we will start his chemo again at 100 Did I lose anyone?

It is hard to express in writing our fears and worries these last few days. This has by far been the hardest week, emotionally since Jackson was diagnosed in November. We have cried numerous hours, through the night, trying not to let Jackson know our fears. Relapse is every cancer parent’s worse nightmare. A word that scares us all. It just reminds us that even though Jackson may look great, he has such a long journey ahead of him. We pray and hope that he remains in remission forever and that the drugs he has the endure do their job and keep the cancer away!

I want to thank everyone once again for their kind words and prayers. They definitely help us get through difficult times. We have such great friends and family! I also want to thank our online support group (ALL-Kids). This group is made up of parents/families of kids with the same type of cancer Jackson has. Their wisdom, experience and friendship have made this rough journey just a little easier (or manageable).
Now onto the fun stuff. . . .

Last weekend we had a wonderful time with Grandma and Grandpa (Eric’s parents) and our nephew and niece, Conner and Lauren. Jackson was so sad to see them leave last Monday. We played miniature golf, went to the Sonoma County Air Show and did a lot of playing! Eric and I even got a night out to ourselves! I have put a few photos up from our weekend. Jackson doesn’t like to have his picture taken, as you can see from the photos.

Faith flying one of the old planes at the airshow.


Eric and Jackson touring one of the antique planes. (I had to put this photo on to show you how much Jackson likes having his picture taken.)


I did get one good photo!




Faith in Grandma's dress that was hers when she was Faith's age. She had to make a phone call :)]

Photos from Miniture Golf




Lauren, Conner and Grandma


The kids.


Faith (with a mouth full of Skittles) and Lauren.

You all know how Tuesday and Wednesday were. . . .

Wednesday night we participated in the First Annual Bill’s Run in Santa Rosa. It is a fundraiser for the Leukemia and Lymphoma Society. Bill was an active runner/participant with Team in Training and lost his battle to cancer a couple of years ago. We never met Bill, but could definitely feel his presence at this wonderful event. We ended the race at the Downtown Santa Rosa Market Night. They had a wonderful band and the weather was great. Jackson and Faith ran around like crazy kids. Faith danced up a storm! The kids even got their favorite kettle corn! It was such a great evening. Jackson even ran some of the course, probably just over a mile!

Yesterday, Nanny took the kids (yes Faith also) back to school shopping. Even though Faith is not old enough to go to school, she has to do everything her COOL brother does. It is so funny! Thanks Nanny! Jackson’s friend Ian came over for the afternoon to play. They had such a wonderful time. If you get a chance, stop by Kathy’s CB page (Ian’s mom) and say hello. She is fighting her own battle with cancer. She is an amazing mom, wife and friend.

I also found out yesterday who Jackson’s first grade teacher will be and had a nice conversation with her. I’m hoping that Jackson’s first day back to school is a lot of fun. School starts on Monday. Jackson’s friend Ryan is in the same class so that is a huge plus! We have all the anxieties that come with starting back to school each fall, but it is much more for us. Jackson was only able to attend kindergarten through mid November last year and then was home schooled. The school days are longer. (8:15-3 pm) We’ll update next week how school goes.

I haven’t kept up with all my training this week due to the chaos. I did manage to get one run in and I have a long run of 6 miles on Saturday. I have a link up at the top of Jackson’s page to my Team in Training Fundraising page. Please donate! Any amount is greatly appreciated and will make a difference! If you do not want to donate online, I have a fundraising letter I can mail to you. Just email me along with your address. THANK YOU SO MUCH TO EVERYONE THAT HAS DONATED SO FAR! I truly appreciate each donation!

One more fun thing. Jackson received his personalized, Songs of Love on Tuesday. Make sure you turn up the volume on your computer so you can hear it. Thank you Cameron Jones for doing such a wonderful job!

Make sure you give your kids big hugs today!

Wednesday, August 24, 2005 3:25 pm

GREAT NEWS!! Jackson's bone marrow came back clear! YIPPPEEEEE! Will update more soon.

Thank you to EVERYONE for your thoughts, love and prayers. This was definately the scarest time for us since Jackson's diagnosis back in November.

Tuesday, August 23, 2005 6:50 pm

We just got home after spending 6 hours at clinic today. It was such a
hard, emotional day.

First, while accessing Jackson's port, the nurse wasn't able to get a
return, which means they couldn't get Jackson's blood to pull and also it was hard to push any medicine in his port. After several attempts and of moving the needle (OUCH!) we finally
got a return. Jackson was so brave, but the tears just poured. You
could tell it really hurt.

Then we headed to the surgery center for Jackson's bone marrow aspirate and IT
Methotrexate (chemo injected into his spinal fluid . While waiting for Jackson to wake up, we got the rsults of his
ANC today (630). It was 696 yesterday at our local lab. All other
counts were pretty much the same, although his platelets had gone down from
263 to 219. Again, not a big difference, but not an increase either. Eric and I had been pretty confident that they would have increased again some from yesterday, but this knocked both of us back alittle. We weren't expecting that.

Once Jackson was awake and had finally been able to eat something, we headed back up to clinic to wait for the results of the bone marrow slides.

We waited for almost two hours for two oncologists to read Jackson's
bone marrow slide. They weren't able to read the first slide (four had been made), due to not having enough cells. Finally the dr. called us back into a room and told Jackson he could stay out in the treatment area and continue playing the game cube if he liked. Of couse, that is what he chose. At that point, I knew the news wasn't good. We were then told that Jackson had broken cells white cells
which could mean two things. Either immature neutrophils or they could be lymphocytes (pre leukemia cells). What????? He could either be relapsing or recovering. They
are concerned however since his ANC has plateaued and has taken so long to get back up to 1000.

We are at a loss of words. We are scared and emotionally exhausted. We will hear by tomorrow afternoon what the lab was able to read. At the lab a machine will read Jackson's slides.
And we won't hear until Thursday what the bone biopsy results are.

To make our situation even worse, our normal dr. is on vacation and we met with another dr. we had never
met before. So the relationship wasn't there to begin with. Very
difficult conversation with this dr.

Just hanging tight I guess until tomorrow hoping for the best. We are
trying to think positive, but it is really difficult. This is our baby, who is so brave and should NOT have to go through this HELL! Life just isn't fair!

We will update tomorrow once we have any results. Thanks for everyone's kind thoughts and prayers.


Monday, August 22, 2005 3:50 pm

This is a short update, since I am having a hard time typing this to everyone.

We got the call a little while ago that Jackson is still neutropenic. His ANC is 696. (remember has to be over 1000 to start treatment back up). His oncologist asked us to come to the hospital tomorrow to do a bone marrow biopsy on Jackson. They are pretty sure he has not relapsed, however he has been off chemo now for almost 4 weeks and his counts still haven’t recovered.

Please, please pray that our baby is OK. Please pray that his body is just needing extra time to recover.

Eric and Tiffany


Friday, August 19, 2005

Sorry for not updating sooner. It has really been a hard week as far as Jackson’s counts are concerned. We had Jackson’s counts rechecked yesterday. His ANC did go up a little to 462. We are slowly increasing, which is great news, but are having a hard time with all the thoughts that go along with being off treatment. Although, it has been really nice to not have to do Jackson’s medications at night, it is not good to be off treatment. We really want to continue his chemo. We know that his body (bone marrow) is still recovering some from of the real heavy chemo drugs he received, but we are ready to get started again! We are also really ready to be able to do other activities which we are limited to while Jackson is neutropenic.

The kids finished swim lessons last week and had a really good time with their instructor Randi. She was awesome with the kids.

Here a couple of silly photos of the kids. Faith had to wear goggles like her big brother!




Jackson did start soccer this week. Monday night was his first practice, and he didn’t want to play since his arm was still sore from having his labs taken that morning. Eric and I think he was tired and overwhelmed. This is his first group activity since he was diagnosed last November. He had a really bad attitude and would not participate. Eric and I couldn’t sleep Monday night, with all the worries about our boy running through our heads. Jackson’s friend Jaclyn came over to play at our home on Tuesday. They had a great time playing games. Jackson however did GREAT at his practice on Wednesday evening. He got in there and had a great time. It was so nice seeing him play soccer. He didn’t like having to run laps to warm up, but managed.

Eric’s parents and our nephew and niece (Conner and Lauren) will be visiting us this weekend. Should be a lot of fun!

My training continues to go well. I have met so many amazing people through Team in Training. I am trying hard to get my fundraising letters out sometime next week. Thank you to everyone who has donated so far. Still need to get lots more donations!

We get Jackson’s counts rechecked on Monday. Jackson has been doing the ‘ANC dance’ to get them to go UP, UP, UP. We’ll see if it is working on Monday. Please continue to keep our son in your prayers. Please also take a moment to stop by and say hello to Baby Donovan. His mom Melissa is part of our online support group (ALL-Kids). Baby Donovan is only 9 months old and was diagnosed with the same type of leukemia as Jackson at only 6 weeks of age. His family just found out that he has relapsed in his spinal fluid. I really hate what cancer and all these children have to go through. They are our true heroes!

Thanks for checking in,
Tiffany

Monday, August 15, 2005 6:49 PM CDT

Jackson's ANC today was only 400. This is very frustating. He has been off treatment since July 28th. We will recheck his counts on Thursday. Today was a very emotional day. It worries us when Jackson can't be on treatment. Lots of worries going through our heads. Too many to write down. . . .

Please pray that his ANC goes up! Jackson can't start his chemotherapy back until his ANC is 1000.

I will try and update later tonight or tomorrow.

Tiffany

Monday, August 8, 2005 5:32 PM CDT

Well, we busted out of UCSF last Wednesday, late morning thanks to our wonderful nurse Mandy. She did such a great job of getting us checked out of our summer vacation home! We had a quiet evening at home, just the four of us. Jackson was especially thankful to be home. Although this inpatient stay was only 6 days, it still wasn’t easy. Six days of being sleep deprived and having our family split up. It isn’t fun.

The kids enjoyed being together again and even put on a little western show for us.



The kids looked so cute in their cowboy hats that my grandparents gave them. They even took a ride on the stick pony that was mine when I was a kid. The photo below is the kids twirling their hats and saying, 'YAHOO'!!!



While I had the camera out, I finally took a photo of Jackson's playhouse. The outside is complete, but we still have work to do on the inside.



Eric left the next morning (Thursday) for our good friend John and Gayle’s wedding in Chicago. He was the best man and from what I hear did a great job giving their toast. I stayed home with the kids and we missed Eric so much! We stayed close to home since Jackson is still neutropenic.

Saturday was my first group training for the SF Marathon with Team in Training. We were to have trained all last week, but since we were still inpatient, I hadn’t done anything. I had hesitated to go to Saturday’s training, but pushed myself to go. Glad I did. We did 3 miles, however due to my delays in starting my training, I only did 2. It went well. I was sore Saturday night, but in a good way. I went to the training on Saturday not knowing too many people. People kept coming up to me asking if I was Jackson’s mom and I proudly answered “YES”!!!
Jackson is one of Team in Training’s team honorees. His biography is given to each person in our chapter at the beginning of their training. I also spoke about him at our Kick Off celebration last Saturday. It was such a great feeling knowing that people cared about our baby and they were busting their butts in the heat to raise awareness and funds for blood cancers. It was a truly inspiring day and I am looking forward to the next training. Please consider donating to the Leukemia and Lymphoma Society. It is a wonderful organization. My online fundraising page is at the bottom of Jackson’s site. You can click on my TNT fundraising page to donate. Thank you so much to everyone who has donated so far! No amount is too small!

Eric flew home safely yesterday and we were so happy to see him! He missed the kids so much and they missed him! Last night we fed the ducks and enjoyed having our family back together.

Happy Anniversary to my grandparents, Harold and Beverly. They have been married 62 years and still going strong! They are great role models and we are so happy for them.

Onto Jackson’s health. . . . .

Jackson’s fevers have continued to stay away and his liver levels have come down. We checked his counts this morning and his ANC is still only 340. It hasn’t gone up at all in the last 5 days. This was very frustrating to hear. We were hoping that they had gone up at least some, but they didn’t move at all. Since his counts are so low, he is not taking any oral chemo now, and hasn’t been since July 28th. As parents of a child with cancer, you desperately want to keep him on track with his chemotherapy. Originally, we had hoped to have started long term maintenance today (the next phase of Jackson’s treatment). So, we will continue to stay close to home until we recheck his counts next Monday, August 15th. Please pray that Jackson’s counts start to go UP, UP, UP. We can’t continue Jackson’s treatment until his ANC is 1000. We have a long ways to go.

We will update next Monday when we recheck Jackson’s counts.

Tiffany

Wednesday, August 3, 2005

YEH!!! We are breaking out of here! Jackson's ANC is 350 today. Which means we can head home later this morning. We will still have to be extra careful at home with his ANC so low. Thanks for everyone's guestbook entries, calls, cards and prayers. They truly do uplift us during these difficult times.

Tuesday, August 2,2005

Yesterday was a pretty good day. Jackson played alot of games on his Playstation. Also, Nanny and Pompa came by to visit for about an hour. Mom just had flown in from North Carolina. It was good to see her. Jackson's liver enzymes were higher yesterday than they were when we checked in last Thursday night. Hmmmm. . . Waiting on the answer. Hepatitis tests are negative. YEH! Probably the chemo? We will keep checking it. Last night Jackson had tons of energy. (He had also had quite a bit of candy). So, Jackson put on his mask and went skateboarding with his IV pole. He holds on to the handle about half way down the pole and pushs with one foot like you would a skateboard and zooms down the hall. At first I was pretty nervous, he goes really fast! The last thing we need right now is an IV pole injury. We did 13 laps up and down the halls of 7 long. He had a blast and had the nurses cracking up! It was so good to see him laughing and having a good time, regardless of where he is. His ANC this morning is 180, up from 120 from yesterday. The doctors haven't done rounds yet. I will update tomorrow probably.

I don't have a laptop in our room this time. So, I have been going down to the family resource room to update. I should head back. Jackson is with a book buddy volunteer at the hopsital. They are reading and finding, Where's Waldo. Jackson loves the Waldo books.

Below are a some photos taken last Sunday when I brought Faith to visit Jackson. They enjoyed each other for about the first 30 minutes. Then back to the normal arguing. Ugh. . .

Hoping to break out of here by tomorrow afternoon. Let's hope Jackson's ANC goes UP, UP, UP!!!


Jackson and Faith playing with the bubbles!


A priceless photo of our hero! Going through all he has to and still smiling! (some of the time!)


The kids giving love!








Jackson showing Faith what his IV pole does. (cute huh?)


Eric and Jackson playing in the playroom at UCSF.


Faith and Jackson doing 'medical procedures' on the baby in the playroom at UCSF.


The future Dr. Jackson O'Neil!


Playing a little basketball in the playroom.

One last thing. . .

I have set up my fundraising page for Team in Training. My Team in Training Fundraising Page

I will be participating in the Nike Half Marathon in San Francisco on October 23rd. The Leukemia and Lymphoma Society has done so much for our family, we are giving back as well as honoring Jackson! Thanks for your contribution!

Tiffany


Monday, August 1,2005

Sorry for not posting an update sooner. Sometimes it is hard to post each day.

Jackson's ANC yesterday was 110. Today his ANC is 120. It is a small increase, however it is an increase in his ANC.

So, we are waiting for the doctors to do rounds now. Once they come around I hope to post the game plan this afternoon. Jackson AST and ALT are higher than when we were admitted. (Liver functions)

We'll see what the doctors have to say about this.

Tiffany

Friday, July 29th 9:30 pm

Hey everyone. This is Tiffany. I just got home alittle while ago and put Faith to bed. She gave me a huge hug when I picked her up from my parents. It just made me melt! Thanks Dad for watching Faith this evening.

Anyways, Eric told me he wrote another entry for Jackson's page and he wanted me to read it and post it since it would take me half the time it would take him. I sat down to read the journal entry and the tears started flowing! Gosh - what an amazing husband and father Eric is! I love him so much! Ok, I know I am being sappy, maybe due to NO sleep from last night, or just the fact that our lives are so crazy! I am posting his entry below. Please take a moment to read and enjoy! He puts such thought into what he writes! Grab a box of kleenex before you read! One more thing - I will be heading back down to the hospital tomorrow afternoon. Will update once we have some results back from the tests.

Tiffany

I am sitting here alone, Faith sleeping, Jackson and Tiffany at the hospital and I am looking at Jackson’s web page. I don’t know if it is the song playing, the incredible pictures or just an overwhelming moment in life slowing down to let me reflect, but I am realizing how a great deal of life is made of moments. Moments that are surprises, predicted, scary, fun, exhausting, enlightening, tranquil, frustrating, encouraging, discouraging and absolutely everything in between and anything out in left field.

A few moments that come to me that our family has experienced:

As I rushed through the front door ready to scoop up Jackson and get him to the hospital I see him and Faith playing, giggling and greeting me like they always do with a shout “Daddy”. He was not stressed, sad and gloomy nothing like usual. He was just his normal playful self—a moment of relief

Looking at the picture of him and Amber- a moment of overwhelming
Gratitude and respect

(look at that smile on his face and take a closer look into his eyes-priceless)

Watching Jackson swim- a reoccurring moment of pride!!!!!!!

Watching Faith walk into Jackson’s room this morning and exiting with his Relay for Life survivor medal around her neck- a moment of realizing the importance of the bond between those two.

The heart stopping moment last night when the ER nurse struggled to get the needle in his port. Looking at Tiffany’s face at the moment I believe it was a moment of fear and frustration.

Saying good bye to Faith as she happily waved bye bye, walking into the Stalder’s house (Thank you, Michelle, Ryan and Nick)- a moment of pride.

Every time Faith and Jackson are giggling together- moments of love and innocence

The moment you see the 38 C on his thermometer- “not again!!!!!!!!!!”


Thousands of these moments pass by us each and every day. I am happy to say when life slows down I take the time to appreciate these moments. My humble advice to all of you is to take a moment as often as possible to reflect on those moments that make up your life.

Stop reading this and scroll up the page just below his tux picture and click on the tiny play button. Then slowly look at the pictures on this page, that smile and those eyes tell it all. I promise it will put a smile on your face. Don’t have speakers on your computer? Play your favorite song.

Thanks,
Eric

UPDATE Friday, July 29th 2:30 pm: Jackson's counts were confirmed. His ANC is 240 and his liver function levels are elevated. Not too sure what the reasons are. Could be the chemo, a virus, or they will be testing Jackson for hepititus A and B. Please pray his liver numbers come down soon and that the cause is just a virus. Jackson continues to feel pretty good. Very anxious. Doesn't like being cooped up in his square box. (I personally don't enjoy it too much either.)

Thanks for checking in.

UPDATE: Thursday, July 28, 2005 8:30 pm - Jackson had a fever at 5:30 tonight. The only count we have so far is his WBC and it is 0.7. Really low. So, we will be transported to UCSF Hopspital tonight. Please pray his fever goes away soon and the cultures come back negative.



Jackson still has a cough that has been hanging around from his cold and croup. He continues to get better each day. Things have been continuing to go pretty well. Last weekend we had Uncle Dennis, Aunt Amy and Jake visiting us. It was a great time! Sunday night, we went swimming and had dinner with our good friends, the VanRipers. They have a wonderful pool that was really nice to swim in during our heat wave!

My mom flew back to North Carolina to be with my nanny. She was taken to the ER on Sunday after church due to high blood pressure and not feeling well. She was released on Monday evening, but my mom wanted to be with her. She is 86 years old and doing great, but you never know what life is going to hand to you. (As we have found out these last several months). Nanny is doing much better. She has resumed her daily gardening. I talked to my mom today and Nanny is continuing to do well.

We went on a long bike ride last night. Jackson made it almost the whole way which was great to see. He couldn’t quite make it home, but he did great!

Today Jackson woke up not feeling real good. He fell back to sleep for an hour after breakfast. (This is not like him.) He has been complaining most of the day today of his head hurting and his belly is upset. His friend Ian is here playing, which I think helps distract Jackson from feeling uncomfortable.

I have been trying to get Jackson’s web page to look a little better. So, I have added several more photos that have been taken lately. Hope you enjoy.


Here is a photo I found of Jackson last year at this time (prior to the cancer monster) with his cousins Connor and Lauren.


Here's Jackson and Eric at the Gaint's game.

Jackson and Faith enjoying their $ 5.00 bag of cotton candy!

Jackson and Faith posing for a photo. As you can see, they entertained the people around us!

Jackson and one his favorite nurses, Amber at clinic during our last visit.

Another really cute photo of Amber and Jackson. He just loves her!

We will update again once Jackson goes to clinic and has his counts checked again on August 8 and 9.

Love,
Tiffany

Wednesday, July 20, 2005

Update:

We spent the early portion of the morning in the ER with Jackson. He woke up having a real hard time breathing. We gave him a breathing treatment at home that helped a little, but not enough. He had a case of croop. After speaking with the oncologist on call last night, I rushed (almost hitting a deer on the way up there!) him to the ER, while Eric waited for my parents to come to our house to be with Faith. Luckily, he had no fever. The Dr. at the ER gave him a dose of steroids and another breathing treatment along with a cool mist mask to wear. It helped Jackson so much! We were heading back home about 4:30 am. Please say a few extra prayers for Jackson today that he is over the worst part of his croop.

Saturday, July 16, 2005

Where does the time go? As much as I would love to say life is getting better, I guess the correct term is that we are adjusting to our lives. We appreciate more than words can say each and every day. It is still hard to think back to this time eight months ago and not break down in tears.

Things have been going well. We definitely don’t take any of these wonderful days for granted. We have still been enjoying this nice summer weather. Although it has been so hot this last week. For those of you not familiar with where we live, we are close to the pacific coast. Close enough to where most homes in our area do not have air conditioning. 90 f the year it is not needed, due to the fog that rolls in from the coast each night. However, there are a couple of weeks each year (we are in one of these weeks now) when the fog disappears and it is so HOT! We shouldn’t complain because it has only been in the low 90s, but we live in a two story house and without air conditioning, it gets so hot!

Needless to say, we have been doing a lot of swimming! The kids are getting better at swimming each time we go. I took the kids yesterday and most of the time they were jumping in the pool.

Last weekend, Eric was in Las Vegas for our friend John’s bachelor party. He had a great time! Things went good while he was gone. The kids and I saw the movie, Herbie and went to Chuck E Cheese. On Sunday afternoon, our family went to the San Francisco Giants game. One of their players, JT Snow has a special program for cancer kids and their families. The program is called JT’s Snow Pack. We arrived at the stadium a couple of hours prior to the game and were able to watch the players practice. We stood right on the field, behind home plate. It was so exciting! Jackson once again had an amazing time! We were able to watch both the SF Giants and the St. Louis Cardinals practice. Then they took us into the dugout to hang out for awhile until JT Snow was able to come out to visit with us. There were only three families, so we got to hang out and visit with JT Snow for a long time. JT Snow autographed Jackson’s baseball we had just purchased for him. Then he asked if he could autograph Jackson’s tshirt. (JT gave each of the kids a tshirt). Jackson quickly said ‘NO’! It had Eric and me rolling on the ground! JT laughed and said, “Not a problem!” Image this is all going on while we are in the SF Giants dugout and there are several JT Snow fans screaming, wanting to have him autograph something for them. We took several photos with JT (which I posted under the photo’s page). We had an amazing time at the game and enjoyed being together as a family. The kids enjoyed their cotton candy and ate lots of junk! We just wish the Giants could have won!

Jackson had his counts checked last Monday for his treatment on Tuesday. His counts were great! His ANC is still 1050! YEH! Monday afternoon, we met one of Jackson’s favorite nurses from 7 Long, Anne Marie and her two nephews to play miniature golf and play games. They came to our house after and had dinner with us and played some more!

We left Tuesday morning to head to clinic. Jackson wasn’t feeling great on the drive down. Once we were at clinic, we had to wait over an hour for his appointment. When we arrived, Jackson was so excited to see that Amber was working at clinic. She is usually at the hospital, but has recently started to work some at clinic. His appointment went well and then we went to the treatment side of clinic to access his port. Amber was able to access him and give him his chemo (Vincristine). After he was done upstairs in the treatment room, we headed downstairs to the surgery center for his procedure. His procedure went good. It took Jackson a long to time wake up after his procedure this time. We grabbed a sandwich on the way to the car and headed home. On the way home from clinic, he vomited in the car. Eric and I guess it was a combination of the anesthesia, chemo and the heat! By the time we got home, he was feeling better, even well enough to play basketball! Shortly after we got home, Randi (Jackson and Faith’s swim instructor) came by to bring Jackson a surprise. . . A lifeguard sweatshirt! He thought it was the coolest thing! Thanks so much Randi!

Wednesday morning, my friend from college Melissa came to visit with her two beautiful daughters, Avery and Megan. It was so great seeing them and catching up with Melissa.

As crazy as this may sound, I signed up for Team in Training again, through the Leukemia and Lymphoma Society. I will begin training next month for the San Francisco Nike Half Marathon (13.1 miles), which will be on October 23rd. I will be training in honor of Jackson. I am training to help raise funds to find a cure for Leukemia. We all know how important this is. I will be sending out letters and asking for donations in the next few weeks.

Thursday night, Jackson had his friend Ryan over to play and have dinner. It was great seeing them play!

Oh, one last thing. . . I took Faith to gymnastics this morning (since we haven’t been for so long!). I knew that Jackson and Eric were going on a bike ride. They rode their bikes all the way down to gymnastics and back! WOW!!! It is close to 6 miles! That is a long way for a 6 year old not on chemo, let along a child who is going through treatment! It was so great seeing him ride fast and enjoying his ride. I know Eric was happy, beyond words to see his son doing so well!

Faith is pulling on my arm to go swimming. I am hoping to get updates out more often, we’ll see. . .

Thanks for checking in on Jackson. Please remember that even though he is doing so good, he still has almost three years of chemotherapy ahead of him. This is a battle that we are going to win! Jackson will continue to takes oral chemotherapy pills each night and will for the rest of his treatment. He also continues to have IV chemo and intrathecal chemo (injected into his spinal fluid) as well. Please continue to pray for our child. He is so strong and brave! We love you Jackson!

Love,

Tiffany

Thursday, July 7, 2005 3:41 PM CDT

Hello family and friends. It has been a crazy and busy couple of weeks. We were very fortunate to have a lot of family visiting for my brother’s wedding, which was July 3rd. My grandmother (aka Gran Nanny), my Aunt Carol and Uncle Jerry (aka Aunt Carrot and Uncle Bull) and my cousin Ginny (aka Gin Gin or Elmo) all were here from North Carolina. (The aka names are the names the kids have given each of them.) Ginny’s sister Holly (aka Hala) and her fiancé John came to visit from Portland, Oregon. It was so nice to have them here and it was also great from them to see Jackson feeling so well. I know the highlights for Jackson from their visit were going to Chuck E Cheese and playing Putt Putt.

Saturday we ran errands for the wedding and then had the rehearsal and rehearsal dinner. Jackson wasn’t in a good mood for the rehearsal I think mostly because he was so exhausted from all the activities we had done all week. He didn’t want to go to the rehearsal dinner either, so Eric took him home and they had a quiet evening together. Faith and I went to the rehearsal dinner, which was hosted by my parents at their home. She had a great time running around with the other kids.

Then the next day was the big day. Holly and I did the flowers for my brother’s wedding. It was an all day task for us rookies. However, they did turn out pretty good. Both kids got into their wedding duds and they looked great. We did of course have to bribe them (especially Jackson) to smile for the pictures and also to walk down the aisle. Jackson was the ring bearer and Faith was a flower girl. They both walked down the aisle like pros and did great! They also had a great time at the reception. Faith passed out early into the reception and Jackson was going strong until the end and even helped clean up some! I put some of the photos from the wedding on the photo page.

The next day the kids were so tired and cranky. It was to be expected, but Eric and I were also tired. Everyone headed home that had been visiting. We then joined in with our neighbors for our block party. It is a lot of fun. Everyone goes out front and brings their BBQs, kid pools, toys, etc. for the afternoon and then we do a fireworks show. We can also see the fireworks from Sonoma State University, since we are so close.

I guess that is it in a nutshell for the week. Since the 4th, we have been laying low and catching up on rest and cleaning up the house. The kids have kept up with swim lessons and are doing great! Jackson and Faith both are little fishes in the water. I took the kids to the pool yesterday afternoon to swim. We had only been there about 45 minutes when the lifeguards told everyone to get out of the pool. Someone had vomited (I know gross) in the pool, so they had to clean it and shock the pool. So, they closed and we headed home. Eric and I were able to spend some time together last night on a date. We went out to dinner and got coffee. It was nice to catch up with each other and relax. Thanks Mom and Dad for watching the kids for us. Jackson and Pompa played basketball right up to when it got dark last night. I wonder who won?????

Eric leaves tomorrow to spend the weekend in Las Vegas for a bachelor party. It is his first time away from us since Jackson was diagnosed. I know he is skeptical about leaving us, but I am really hoping he will enjoy it and have a good time and relax. But, not too much fun! (joking) Then on Sunday afternoon, we are taking the kids to the SF Giants game. JT Snow (Giants player) has a program he does for children with cancer, so we are looking forward to a day at the baseball field.

Thanks to our friend Jason Yunker for participating in the Seattle to Portland Team in Training event. He rode for Jackson and wrote Jackson’s name down his leg. (I have also included this photo on the photo page.) Also thank you to our angel family for the box of goodies. The kids love their new tshirts.

Jackson continues to feel good. He has had a rash on and off for the last week or so. We can’t figure out if it is the sunscreen we are using or something else. It is only something I worry about since he has leukemia. I don’t think it is something to really worry about though. Eric is really good at letting me know when to not worry about something. Jackson is looking really good. He has gained some weight and his hair is coming back in. Along with that, he is getting a real good tan! Although he looks good, we still have to remember he has a long road ahead of him and his treatment will continue for almost three more years.

We have Jackson’s blood counts checked on Monday and then if everything is high enough, he will go for treatment on Tuesday. We are looking forward to having Aunt Amy, Uncle Dennis (Eric’s brother) and cousin Jake visit in a couple of weekends. Jackson can’t wait!

We truly thank everyone for checking in on us. We couldn’t make it through this journey without everyone’s support. Please make sure you sign Jackson’s guestbook and say hello.

Love,
Tiffany

Monday, June 27, 2005 6:14 PM CDT

Whew. . . . We made it through the weekend. Last Friday, Jackson, Pompa (my dad) and I went to Sonoma to the Nextel Cup Nascar races at Infineon Raceway. As we drove through the scenic hills through Sonoma, Jackson was starting to get excited when Pompa told him to look straight ahead at all the white tents and flags. As we drove into the parking lot, I looked back at Jackson and he had the BIGGEST grin on his face. I have to say, he was probably more excited here than when he went to Disneyland.

Anyways, we were able to take a golf cart ride up to the track (thanks to our handicap permit). Once we got to the top of the hill where you could see the race track, Jackson just melted. He couldn’t believe how big everything was! We walked around for most of the morning and early afternoon. Pompa bought him several Nascar items from several of the driver’s trailers. His first purchase was a Jeff Gordon sweatshirt. Then a Michael Waltrip baseball cap, then several cars (I know one of them was Bobby Lebontes). (Sorry, but I don’t have the Nascar knowledge that Jackson does.) We had some lunch and visited with some friends that were also at the races on Friday. Jackson got Jim Englebright and Borris Said’s autographs. Although, I think he was more excited to get the Jelly Belly candies from Jim Englebright. One of his sponsors is Jelly Bellys.

As we patiently waited for Michael Waltrip’s PR guy to call my dad back on his cell phone to let us know when Michael would have a moment to meet with us, Jackson hit his chin on a metal bar that he had been playing on. The tears came running down his face. You could tell it really hurt him. Wouldn’t you know as I was comforting Jackson (keep in mind this is a very crowded area where a lot of people are watching the cars go in and out of the garage area) my dad says, they are ready for us. I had to try and snap Jackson out of his rut and get him excited about meeting Michael Waltrip. So the three of us (I am carrying Jackson who is still crying) maneuver through I don’t know how many people and get past the security people into the garage area. Now for those of you who have Nascar knowledge, they do not allow anyone under the age of 18 in the garage/pitt area, so this was a big deal. Jackson is starting to lift his head a little to look around. We are walking past several driver’s trailers and we walk right up to Michael Waltrip’s trailer. He comes out to visit and meet with Jackson. We sat down on some of the race tires and chatted for a few moments. He was very personable and talked with Jackson for a few minutes. As we were leaving Michael’s area, Jackson said, “There’s Tony Stewart”. Jackson knows almost all the driver’s names and numbers of their cars. He just amazes Eric and me. We left the racetrack shortly after that. Jackson slept the whole ride home. He couldn’t wait to tell Eric about his day.

We had tickets for Saturday’s races also, so we took Faith and Jackson out to Infineon. Let’s just say it isn’t the best place to run after a two year old. But, we had a great time watching the race, seeing the cars up close and hanging out as a family.

Jackson watched the race yesterday on TV. Eric did a lot of work on the backyard. He laid the top soil for the sod and installed the sprinkler system. He has worked so hard on completing our backyard.

This week is going to be very busy for our family. My brother is getting married on Sunday, July 3rd. Both Faith and Jackson are in the wedding. I will try and post photos from the wedding next week. Our family will be arriving all week for the big event. Jackson and Faith’s great grandparents will be coming to the wedding. My mom’s mom (aka Gran Nan) is flying here all the way from North Carolina tomorrow with my aunt (aka Aunt Carrot) and my dad’s parents will arrive this weekend. We feel so fortunate to have all of them visiting and we really look forward to the kids spending time with them. My cousins Holly and Ginny will be coming on Thursday. Can’t wait! The kids love them so much!

With all of this going on, Jackson has an art class tomorrow along with a swim birthday party in the evening. The kids have swim lessons all week along with haircuts, tuxedo fittings, etc. Let’s just hope I make it through the week in one piece. The best part of having so much going on is that even if it is for a short while, we temporarily forget all the CRAP our son is having to go through.

Jackson is still feeling good. Some aches and pains here and there. His stomach has been upset most of the day. Don’t know what that’s about. He is the BEST son! Eric and I are so proud of him. WE LOVE YOU JACKSON!

Love,
Tiffany

Looking for an update? Tiffany will have to give you the details but I have finally stopped to take the time to make a journal entry. I have kept my own journal for Jackson before he was even born with plans to give it to him when he is a father to be but I thought I might throw a few thoughts out to all of you who read Jackson’s Web page. I have so many thoughts that I want to share with everyone you might want to sit down with a bite to eat.

Tuesday we went to the city for treatment, as usual we were running late, forgetting things, arguing about the details of the day but somehow, through the usual dreading of the day, there was a calmness to the madness. We have made this trip so many times before but for some reason we were all relaxed. At first I thought it must be that we have simply gotten use to going to get treatment but around 1:00ish in the afternoon I discovered it is not that things have gotten easier for us it is that we have become stronger!!! As Tiffany held Jackson on the Surgery bed; Jackson closing his eyes in anticipation of his unwanted nap; I rubbing his arm gently, I realized that the sadness, fear and frustration was still present for all of us but we have all united to kick cancers butt! I do not believe this strength has solely come from within our heart. I believe we have been given a gift from all those people who have been supporting us in so many ways- especially all of you visiting this site. Thank You, Thank You, Thank You, Thank You, Thank You! I do not know what else to say but thank you. We do not take any support for granted, from the messages in the guest book, the prayers for our family, the meals that are fixed, the unconditional love from our family to the financial support, we are extremely grateful.

With this being said I do not want to discredit the amazing strength that comes from a mother and of course my son. Not only does a mom carry the jackets, baby dolls, towels, snacks, drinks, children, toys and god knows what else every day, Tiffany carries a much heavier load each and every day. This takes the strength only a well qualified, loving mother has to offer. When she held Jackson on that surgery bed Tuesday she had the absolute power to relax our son as he went to sleep. We gave him a kiss as she laid him down and I could see in Tiffany’s eyes how fatiguing it is to give so much of her self to him. To disguise her own fears and sadness in order to ease his, takes amazing courage. She walked out the door and I asked her “It doesn’t get any easier does it?” She did not need to answer, her tears gave it away. As for Jackson words can never describe the amazing power he holds-He is my Hero!!!!! He has amazed us with his ability to find humor in all that is happening to him. I cherish the moments that he jokes with me about poking me in my port or giving me shots or even when he pretends to have been injured exclaiming “I need to go to UCSF!” I love his sense of humor! A chip off the old block. As for Faith, my Home Depot buddy, she is the sweetest sister Jackson could ever have. Their loving relationship is the most amazing thing to watch- don’t worry they are normal too, Faith bites him and he pushes her as all siblings should. Tonight is the first night we are letting the two of them sleep together in Jackson’s bed. As they have done many times before, they have fallen asleep holding hands. This is my Father’s Day Gift!

Well I thought I was going to run off in tangents and tell all of life in the O’Neil home but it seems I just wanted to express to everyone how grateful we are for your support, for without it we would not nearly be as strong of a family as we are today.

Thanks for helping us kick cancers butt.

Jackson's very proud dad, Eric

Monday, June 13, 2005 11:59 PM CDT

Hello! Sorry for the delay in updating today. It has been a crazy day, or shall I say week, or better yet, year!

Let me start off by saying Jackson’s counts are finally high enough to start the next phase of treatment. Tomorrow, he will start Interim Maintenance II. We have already gone through this phase, and it is a lot easier on Jackson than the phase we just completed. We only have to go to clinic once a month and most of his chemo during this phase is administered orally and the side effects are not as hard on his little body.

Jackson’s counts for today were:

HGB: 12.4
WBC: 3.5
ANC: 1050
Platelets: 443,000

Since we have been home from the hospital, we have had to stay pretty close to home, since his counts have been so low. Two Saturday’s ago we participated in The American Cancer Society’s Relay for Life. It was a very fun event. It was a very emotional day for Eric and me. Jackson was the youngest survivor at the event and he got an extra special goodie bag. The kids played lots of games, ate popcorn and we participated in the Survivor Lap. In the evening, luminaries are lit in honor or memory of individuals who have had cancer. I did a lot of crying that night. It was nice to be there as a family. On Jackson’s picture page, I put a picture of the luminary Faith decorated for Jackson. Isn’t it beautiful?

Jackson’s playhouse is still a work in progress. We are waiting for his slide to be delivered and attached to his playhouse. It is almost done being painted. The colors Jackson picked out are great! Eric has been working really hard at getting our backyard complete. He is such a wonderful husband and father!

I took Jackson to his end of year Kindergarten picnic last Friday. He played a little, but didn’t really want to be there. He said the best part of the picnic was playing basketball with his pal Ryan. Saturday afternoon we took the kids swimming. Faith is a fish! She loves to swim! Jackson also had a great time at the pool. His friends Jaclyn and Sally were there also, so he had friends to play around with. Eric and I were so happy to see Jackson playing with his friends and having so much fun!

Faith had her two year check up today. Her pediatrician said she looks great. She got one shot in her little leg and didn’t cry or even whimper. She’s one tough cookie!

Since Jackson’s counts are back up, we took the kids to see Madagascar tonight. Jackson has wanted to see this movie, but with his low ANC, we haven’t been able to take him to places like that. It was definitely a night Eric and I will remember. Both kids were SO excited to be at the theatre! They had their popcorn and candy in hand (they had to sit beside each other) and laughed throughout the movie. The best part was seeing Jackson laugh and for just one moment, I forgot our little boy is battling this awful disease. Sappy ‘ol me left the theatre crying because I was so happy we were able to FINALLY see this movie as a family! I have come to appreciate the small things.

Jackson and Faith had their first swim lesson today. It was a lot of fun watching them with their teacher, Randi. Jackson really likes her. She taught him last year and this summer, she is teaching both kids how to swim! I will try and remember to bring my camera on Wednesday at their next lesson.

Tomorrow morning we head to clinic for a full day. IV Vincristine (chemo drug) and then his intrathecal chemo (Methotrexate). Then Wednesday he starts a seven day pulse of steroids! Oh what fun!

We want to wish my parents, Nanny and Pompa a very happy 36th wedding anniversary. They have helped out so much during this journey. We love you!

Thanks for continuing to include Jackson and our family in your prayers. We truly appreciate it.

Love,
Eric, Tiffany, Jackson and Faith

Monday, June 6, 2005 4:41 PM CDT

We had Jackson's counts checked today in hopes of having treatment tomorrow. In order to start the next phase of treatment, Jackson's ANC had to be >1000 and his platelets had to be >100,000.

His ANC is only 209 and his platelets are 423,000.

So we will have another week off from treatment and will get checked again on Monday, June 11th.

Jackson only has one more day of school left. He is VERY excited! I am going to try and take him to the end of year picnic for his kindergarten class on Friday.

Things have been pretty uneventful here this last week. Haven't gone out too much knowing Jackson's counts were still recovering. We took the kids to the American Cancer Society's Relay for Life event on Saturday. It was a fun day. Jackson was the youngest surivor and received a special bag of goodies. He also received two medals for being a survivor which he is especially proud of. We went back to the event Saturday evening for the Luminaria lighting and it was a VERY emotional evening.

Otherwise, we are hanging in there. Jackson's allergies are so bad! Between the two of us, we are constantly sneezing and rubbing our eyes. Hoping this allergy season is over soon.

Thanks for checking in. Please make sure you sign Jackson's guestbook so we know you stopped by to check on him.

Take care,
Tiffany

Tuesday, May 31, 2005 4:02 PM CDT

YEH!!! We just got home with Jackson. His ANC yesterday was at 80. LOW again. Jackson was feeling really well last night, we had to ask him not to jump on the bed. I spoke with the doctor and asked if we could head home last night. He said if Jackson's ANC was over 150 by this morning, we could check out! It was at 160! We were home by 1:30 pm today.

Thanks for checking in on us. We will get Jackson's blood counts checked on Monday. I will try and update then.

Tiffany

Sunday, May 29, 2005 6:56 PM CDT

When we got Jackson's blood counts yesterday morning, we knew in the morning that his Hemoglobin went up to 9.1, platelets were way up at 53,000. The only missing piece of information was his ANC. Well, the doctors did their rounds at about 11 am. When they came in to discuss Jackson's progress they were very happy that his platelets and hemoglobin had increased so much. The only information that was missing at the time they were meeting with us was his ANC. It wasn't back from the lab yet. His ANC yesterday came in at 120. LOW, LOW, LOW. They expected that, but we were told that they really thought his ANC would jump up today like his other counts had done yesterday. We were told to plan on possibly going home the next day(Sunday-today). We were very surprised and excited to hear this information! Which brings me to today. . .

His ANC went DOWN from 120 to 60! OUCH!!! Well, needless to say we aren't going anywhere. The doctors have told us that it is great that Jackson's body is producing his own red blood and platelets again. Now, comes the sit and wait game of when his ANC will rebound. It is very dangerous for us to leave the hospital when his ANC is so low. Rem ember, the normal range is 1500-2500. We were all very disappointed to hear this news. Anyways. . . .

Eric spent last night with Jackson. Jackson fell asleep eating pizza at 7 pm. They had a great time hanging out this morning and playing a bunch of playstation. Thanks Uncle John and Aunt Jail (Gayle) for the new Golf game for the playstation. The boys broke it in.

I spent the night at home Faith. When Faith and I got back from the hospital, she wanted yellow ice cream. So, we walked down to Cold Stone for some yummy yellow ice cream. The walk there was great except she got freaked out by her shadow. It is pretty funny watching her scream and kick her legs like crazy trying to get rid of that silly shadow doing the same thing she is. The walk on the way home was a different story. Faith and I got about half way home and saw a couple of boys riding their bikes and a dog that happened to look alot like Maggie chasing them. Guess what, it was Maggie. Now, I'm thinking in my head, 'Can't the big man upstairs give me a break?' So, after Maggie got her running out of her system, she came to us. I walked both Faith and Maggie home (Maggie without a collar). Whew. Little more than I had anticipated on our little ice cream outing. We got Maggie back home and locked up and then I couldn't find Benny. We found him a few minutes later in the neighbor's backyard. I guess there is a hole in the fence somewhere.

I came back down to the hospital this afternoon to be with the boys. Today we had to change Jackson's port needle. It has to be changed once a week. He did AWESOME!!! The best he has ever done. He removed all the tape covering it by himself. No tears or screaming! He then had a bath and got cleaned up. He is needle free as I write this and will be re-accessed again this evening. I know he will do great. Tonight I will head home to be with Faith again and hang out again tomorrow since Eric has tomorrow off from work.

Thanks for checking in on us. We'll update again soon.

Love,
Tiffany

Saturday, May 28, 2005 0:02 AM CDT

Day 7. . .

Jackson's ANC came down some more to 180. His platelets came down some more also. Today they are at 32,000. Jackson continues to look and feel good. The doctors keep asking him how he is feeling and they always get the same answer, good!

Eric spent the night with Jackson and then headed back up north to work this morning. I came down to SF this morning. Basically, we haven't really seen each other in over a week.

Our friends, Kathy, Jillian and Ian came down to visit us today. It was great having friends for Jackson to play with. They played Hullabaloo and Powerpuff Girls. It was also great chatting with Kathy. When the kids were playing Hullabaloo, the doctors came by on rounds. They were cracking up at three kids dancing and jumping around. Although I know they felt the same way I did that it was nice to see the kids having a great time. Regardless of where they are.

Jackson wanted me to tell everyone how many bags of salt and vinegar potato chips he ate today. Drum roll please. . . 6 bags! Yes, he is beginning to smell like malt vinegar, but he is eating!!! He thinks it is so funny! He loves sour and salty foods.

Thanks Mrs. Lori for the bag of goodies for Jackson and thanks Nanny and Pompa for bringing the DVD of "Are we there yet?" for Jackson. He thinks it is the funniest movie. Nanny and Pompa came down tonight to hang out for a while. It was nice to have a little break and to visit with them.

Uncle John and Aunt Jail (Gayle) will be coming in tomorrow from Chicago. Jackson is VERY excited to see them. Tomorrow will be a good day! We are hopeful that Jackson's counts will start to recover here real soon. Hey we'll even take them staying the same!

Thanks for checking in on us. We appreciate all the kind messages and thoughts.

Love,
Tiffany