To any of the parents of these children...please forgive me if at times I have to shorten the posts....my bulletins were getting so long my email server would not send them out. And instead of making a 3rd bulletin I am just editing these down some. I think you will find I am still leaving most of the important info in. Let me know if you have a problem with this. 

 

Evon

 

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From: Yeah That's Right, I'm a Heart Mommy! Kaitlyn Is One

 

Bryson is going in for critical surgery today, please say a special prayer for this little warrior!

 

 

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Monday, September 15, 2008
   

 

Still Holding On...

 

William is still here, with his Mommy by his side.

 

But his journey is coming to an end soon.

 

Cancer really does SUCK!!!

 

Please keep praying for a Peacefull and Painfree passing...

 

Praying for a Miracle has come to an end...We are NOT giving up but accepting God's plan.

 

We hate seeing William in pain, That is something no mother should have to watch and no Child should have to go through.

 

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Oliver
   
It's been a minute or two since we last posted a journal entry...so here goes. Nothing has changed really...the doctors did realize that Oliver was getting too much food so they took him back down to 60ccs. His formula is also really rich because they upped his calories, so guess what...he had diarrhea for a couple of days, but today he's back to normal. He now weighs a whopping 7 pounds..okay add a few ounces onto that, but I remember exactly how many so it's a little over 7 pounds His G-tube and Nissen is tomorrow. Hopefully all goes well! He got a new IV today too...it's in scalp. Looks scary, but he doesn't seem to mind it very much! But that's all we've got for todays upday...so we'll update tomorrow after the big day!

 

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Monday, September 15, 2008
   
Drum Roll Please!!!
Current mood: cheerful
Category: Blogging

 

WE HAVE REMISSION IN HIS CSF!!!

 

I haven't been this happy in so long!  The best part is that we now know it wasn't because the chemo stopped working, he just wasn't getting enough.  When a relapse occurs that is usually why it is so bad because it means resistant cells.  We praise God that that was not the case with Donavynn and continue to pray that he holds his healing hand on him throughout this battle that he is faced with.

 

He handled treatment today like an old pro and for the moment his counts are fabulous.  We may have to find some fun stuff to do quick this week before they begin to fall.

 

They are going to keep him on the Dexamethasone because of it's ability to cross the blood brain barrier.  So I asked Nancy if the bone issue happens can they fix it.  And she said yes!  They would have to take him off the Dex to do so, but the damage most likely would not be permanent.  So that too was good news.

 

His courage and spirit amazes me!  While we were waiting in the waiting room his doctor walked through and Donavynn cheered and said "WOW, DR. SHORE!"  It was so cute!  How many kids would be excited to see a doctor who has to do so many things that hurt him.  But he understands that they do it to help him get better.  I have found if we explain everything to him he understands and accepts it.  Like this morning, he got up while I was in the process of eating breakfast.  I told him that I was sorry and I had tried to eat before he got up because I know how hard it must be to not be able to eat and he said "It's ok, I can eat after treatment"  What an amazing attitude.  I don't think I would have been quite that understanding! Lol

 

So that is about all for now.  We start 28 days of steroids tonight so please keep us in your prayers, pray for sanity! Lol

 

I thank everyone for the many prayers that have been sent up this past week, they are doing wonders, please keep sending them up!  Ok, gotta study!  Big test tomorrow.  Have a great night!

 

Oh yeah, and his echo cardiogram was normal too!  So his heart is still strong, lets pray that it stays that way!  I have pics of today that I will get up asap.

 

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Sunday, September 14, 2008
   
Little David Update

 

Davids white blood count was lower today so the meds are working against the pseudomonas infection. He definately has it in both tubes. The chest tubes are coming out in 20 minutes. He seems a little better today except for his cough. It is really nasty. The surgeon came in during rounds and said if he starts to take just one step back he is going up to the OR to clean out the nasty fluid building on his left side. I will update later today

 

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Saturday, September 13, 2008
   
Counting Down the Days
Category: Life

 

So here we are, less then a week before we step back into the Heart and Lung Institute to get the verdict on Lily's heart and how it has been doing. From appearances, she has been doing well, with the occasional blue lips and dusky complexion...she has been growing, eating, sleeping normally, etc. Nothing to out of the norm except for the things mentioned above. She is now weighing in at a respectable 17lbs 4 oz...and is 27 inches long.
 
She is trying to crawl with all her might, she is so cute, she will get her toes dug into the carpet and get her knees up under her...the only problem with that is, she doesn't realize that she needs to push up on her arms when she does this, so she does an automatic face plant into the carpet...She doesn't seem to mind it...so as long as she is happy, we're happy. So speaking about how she is trying to move everywhere, I like to refer to her these days as my rolling tumble weed. She is everywhere...good gracious, I have had to put pillows where I don't want her, (in our apartment baby gates don't fit everywhere...which is annoying) I have contraptions all over the place to keep her out of things. She giggles to while she rolls, which is adorable to say the least.
 
Anyways, all in all, everything on the home front is good...just a little nervous...but good. I will be happy when the day has come and gone and nothing more then a "She looks good, we will see you in 2 months" come from all of this...One can hope and pray that is all that is said...Please pray with us. I will update once that apt is over unless something of importance comes up between now and then!

 

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Sunday, September 14, 2008
   
Prayers needed..please!
Current mood: hopeful
Category: Life

 

Wow do I have alot going on lately. I had to take Christian, Andrew and Jaidah to the hospital on Saturday for some lab work.

 

Jaidah has been having problems with UTI's. She just got off medicine about two weeks ago, and started having problems again. She is hurting so bad, that she can hardly sit down, so we are hoping to have her tests results by Tuesday, and go from there. I just wish there was more we could do for her...it's so sad. So, could you please keep her in your prayers. Hopefully, we will get to the bottom of this and she will start feeling better soon.

 

The next one I need prayers for is Christian. I took him in for his 3 year check up on Friday, and he weighed 46 lbs, and is 3'4" tall. So, you could say he is a pretty big boy for being 3. Well, the Dr. is concerned about possible diabetes or some kind of thyroid problem. I am hoping it is neither of these, and that he is just going to be a big boy. So, we are waiting for those test results as well, we are hoping they will be in on Wednesday. I guess, we will just have to wait and see, and deal with whatever is thrown at us.

 

Also, Andrew is going to need some prayers as well. He had his lab work done (AFP) for his cancer screening. We should hopefully know the results to that on Wednesday as well. Also, he will be going in on Tuesday for his abdominal ultrasound to check for tumors. This is always a scary time for us. God has blessed us every step of the way so far, and I hope he continues to do so, but I can't help but think..."What if". Every parent is guilty of doing this, we try to think positive all the time...but there is a little thought back there that always hangs around and says "What if". (I hate that little thought).

 

This week is full of us getting alot of news, and the outcomes could be life changing. And I am not going to lie, a part of me is scared to death, but then I have that other part that says "God will get us through whatever is thrown at us." So, I guess all and all you could say I am a little overwhelmed with emotions. I just can't wait to get the test results for all of them. I really hate waiting when it comes to something like this.

 

Well, as I look at my calendar, and see the 6 appointments I have in the next 4 days....I think I could possibley be a little distracted from sitting around worrying...LOL!!!

 

I thank each and every one of you for reading this and your prayers and support. I will update you as soon as I find out more.

 

Thank you and God Bless!

 

Natasha

 

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Preparing
Posted 1 day ago

 

Everyone please send some prayers as we prepare for our trip to Charleston early tuesday morning. Pray for my car to make it without any bad things happening. I've never driven it that far so i'm nervous about how it'll do.
Also send some prayers for my nephews girlfriend, tomorrow morning she will be induced, pray for a safe delivery for her she is young. And also pray that the baby will be healthy and arrive safe. I'll be a Great Aunt lol.
If you would like to donate to Susannah Lundeen Medical fund it is at Bank of America or i have paypal: mom4survey@yahoo.com

 

I will update on return from our doctor appointment in Charleston at MUSC. I'm going to try and go down and then come back in the same day.

 

Love to all, Brooke

 

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Trenton's level update
Posted 31 minutes ago

 

Trenton's cordinator called to say his levels were PERFECT today.

 

Wonderful news I thought I would update everyone.

 

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DAY 104

 

We finally got to sleep around 10pm last night; woke up at midnight in pain, got that handled with meds, was awakened at 3 am by the on-call dr examining Liv--seems her potassium was still critically low (2.6) even after dosing her once with the stuff, so she got another good jolt of potassium (no one is sure why this is happening). Woke again at 6am to upchucking, but only the once so far today. The belly spasm-like pain is being blamed on a blocked gall bladder seen on her belly ultrasound yesterday, today she went for an MRI to look for gall stones (yes, she had an MRI of her backbone just last Tuesday, but it doesn't show her gall bladder very well). She is VERY yellow, but I've seen worse. Tomorrow the liver dr & the neurosurgeon are supposed to make their recommendations. Her back is not really hurting, but is horribly crooked. Blood counts must be ok, or at least not too exciting because all the drama centers around Liv's belly. Bone marrow biopsy shows NO detectable leukemia (Yeah!), and even better 100% donor cells. This is great news, it means she has a chance of fighting off leukemia, and we are so thankful we are not having to fight this beast with chemo at this point. She was put on antibiotics, just as a precaution that her gallbladder is infected. Momma C.

 

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Day 159 - Stem Cell Transplant. Day 214 - Inpatient

 

Well, everything Dr. Seif did worked. By 3 PM yesterday afternoon Matthew's saturations were 94/95; he was peeing well but still very tired. Matthew has a pleural effusion on his left lung. For those of you who may not know what that is here goes. There are two thin membranes in the chest, one (the visceral pleura) lining the lungs, and the other (the parietal pleura) covering the inside of the chest wall. Normally, small blood vessels in the pleural linings produce a small amount of fluid that lubricates the opposed pleural membranes so that they can glide smoothly against one another during breathing movements. When either too much fluid forms or something prevents its removal, the result is an excess of pleural fluid--an effusion.

 

So, every time Matthew gets a transfusion of blood or platelets, has his feeds hooked up, drinks and eats, all that fluid in these things would normally go through his system and be flushed out through the kidney’s and bowel. Well, that doesn’t happen with Matthew, his kidneys are working but not fast enough to keep up with the volume of fluid, the fluid needs to go somewhere, and that somewhere is on his lungs. As of now, the doctor’s have it under control with diuretics and breathing treatments. He is doing well and if he continues to do well then we can start to get ready to go home. Already this morning he asked Dr. Bunin when home is going to happen, her answer, “We are working on it, you have to behave yourself, okay.” Matthew smiled and said, “No problem!”

 

So, here we are praying that things stay on course and Matthew continues to heal.

 

I will update again.

 

Keep up the prayers.

 

God Bless,

 

Cathyie

 

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Hello from Childdren's Mercy! We are back in, we knew that she was on the fence, she fell off at 4 this morning. We actually got up to 4 henson pretty quick this time, only a couple of hours from ER to floor. We will be here for a bit, several days anyway. Her counts need to come back, they are low, or no fever for a while. She is waiting on blood products now. The transfusion should make her feel better.

 

Thanks for all the prayers and support.

 

The Larms

 

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Scans are clear!!!! So...good news there...just trying to figure out the backside/hip is all now and why they continue to hurt her so bad.

 

Mac WAS up for a walk (roll) tonight.....for the first time OUTSIDE! I got her to her chair at sunset and I pushed her in the neighborhood. It was warm out still...but nice breeze and halfway cool. I was just really happy she got outside is all. First time we've ever been able to do that. Got the pads down down on her chair and I walked and she rolled! We wandered around just strolling in the streets of our neighborhood and talked and, of course, she pointed out what houses she likes, who has good "curb appeal" and who doesn't! haha She picked out some trees she liked that she thinks will look good in our yard. I really enjoyed getting her outside ANNNNDDDD to her chair! I get excited and happy about the smallest of things for her. It's those little things that are getting us through. With that being said, the hip was uncomfortable still sitting (reclined) and the backside...but she tolerated it for a good 30 minutes. Still have to be able to make it a good 2.5 hours for her to get back to school. Working on it and not giving up here. Just going to keep trying each day!

 

Mac has also had a good 2 days of eating some "real" food (chicken and rice) again. Some went ok...some not so much. But she has felt hunger the last couple of days again.....output has still been straight water the last few days....but she has been feeling hunger again. although..she only wanted steamed rice for dinner tonight. A little at a time.....

 

So...going to keep trying to move her...move her legs....keep stretching her legs and keeping them mobile....it is still hurting her..and hurting quite a bit....no idea....but at least the scans show no infection in the hip or bone! At this point...anything positive is a good thing and we'll TAKE IT! The pain is over on the side of her hip/leg...I would say directly over socket area is where she is holding and hurting at...and the abscess was left side of the backside. So...the latter is about healed up...but still tender.

 

Mom

 

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Hello Everyone,

 

I wanted to pass along the good news that Lily's PET scan showed the same results as the MRI, the tumors in the body are gone! The primary tumor in the head is still there but much much smaller. I know Cheryl, Andre, Sydney and Lily are having a wonderful time in Florida and have limited access to the internet.

 

have a great week.

 

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How did today go? Well, good for Kylie..bad for mommy. Kylie is doing good. The only issue we are still working on at the present time is her Prograf levels (anti rejection meds). The doctors have cut her dose in half for a few days. We will see if this makes a difference on Thursday morning. Mommy on the other hand, dislocated my shoulder today. I am in pain with no pain meds. I did not go to the doc because I was able to put it in myself. The only thing they would do is x-ray it and tell me I need to get it fixed. One day. For now, I am going to try more ibuprofin and maybe a hot bath. Good night and God bless.

 

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Jackie's Nurse Practioner called to inform me that Jackie’s IGG (immunoglobulin level), which needs to be above 500, is only at 124. So, tomorrow’s clinic appointment will be longer than anticipated since she now has to get a transfusion of IVIG (immune booster). I am thankful that I got Jackie out of the apartment considering her immune system is so low.

 

Jackie’s teacher agreed to come to the hotel for class so Jackie was beyond happy. Her teacher also agreed to pass out the color sheets to her class J

 

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Isaiah didn't eat for about 14 hours yesterday. He would either gag over and over or cry when I would try. I had a very emotional night last night and let it all out. I haven't cried as hard as I did last night since the day he was diagnosed. My face was a swollen mess! Ethan kept saying, "It's okay to cry, Mommy." What a sweetheart. It felt good to let my guard down and just let Matt hug me. He did finally eat at 9 and then went to bed. He has eaten about 6 oz. total so far today. I know that his body is giving out on him. I will miss him very much, but right now I just can't stand to see him uncomfortable at all. If you could all pray for him to be comfortable from here on out, that is our request at this point. Only god knows how much longer we have with him, but I feel like it is all happening so fast. Take care and God bless!

 

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here is the video links for the videos that lynn put together. they are very awesome lynn!! you did such a great job...thank you! it is a blessing for all of the family to put some faces to the names left on the guestbook. to all of you that sent pictures...THANK YOU from the bottom of our hearts! the response from everyone has been amazing. ONLY GOD! please continue to be in prayer today for cole and aaron and moireen...it has been one week since they started up the chemo and i believe through everyone's prayers that cole's body was able to handle all of the medicine. PRAYER does work people! look at how many prayers have been answered so far on cole's behalf. so often we get caught up in certain situations in life that we forget to look back and thank god for all he has done. so THANK YOU DEAR LORD for prayers that have been answered so far on cole's behalf. thank you for the blessing of cole's life. we pray you would continue to be with them all and lord we pray you would fill cole's body with your spirit...keep him comfortable...rid his body of this awful disease...and give him peace...thank you lord for all you have done and all you will do. we all love you. in your sons jesus name we all pray...amen. thank you again to all that have shown my family such love and support....only god! julie (aaron's cousin)

 

 

 

 

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Dear Friends,

 

This is Jennifer's sister /Carson's Aunt Joanie, (again).

 

Carson, Jennifer and John are making their way back to Houston today. Also, John's Parents flew home to Florida, after celebrating their 50th Wedding Anniversary in Texas with Carson, John, Jennifer & Hurricane Ike - Yikes !!

 

We are all hoping that MD Anderson will be fully operational upon their return to Houston; however, they have had no internet access and limited cell phone signals -- so, it has been difficult to keep in touch.

 

Carson is scheduled to begin the last of three Radiation treatments tomorrow, (Monday), & Chemotherapy and Stem Cell Transplantation. Once they are back at MD Anderson and settled in, Jennifer will update everyone ... I'm sure they will have some interesting stories to tell !!

 

Be well,

 

(Aunt) Joanie Kelly

 

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Cameron's counts are dropping fast, just as we want them too. His appetite remains good. So far, no fevers. He was happy that his cousin Ian was able to spend some time with him this weekend.

 

Samantha & I left early this morning to go the the 2008 Cameron Brown Classic golf event. This year's event was organized by our friends & it was a huge success. Huge thanks to Jenny, Chris, Angie, Erin & everyone else I have neglected to mention for all of their hard work and thanks to all of the golfers who came out in support of us. Despite numerous calls for rain, we had beautiful weather. Will try to post some pictures later on. We have several t-shirts left over, so if you still need one, please let me know.

 

Will update as things develop. Continued thoughts & prayers appreciated.

 

Lori

 

Join the national bone marrow registry for free Sept 7-22 - http://www.marrow.org/HELP/Events/NASCAR/index.html

 

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Today was a very quick day at the clinic I no sooner got there they took his weight which now he is 139.9 and gained 2 lbs since last week. Then they took his blood and next thing I know we were out the door. His counts were great really great. So our next time there will be on the 22nd in day hospital where they will do a chemo LP and bone marrow sample to check if the cancer is still there or gone. So I really wanted to visit while I was there at CHOP today but, we were in and out in no time. I will be sure to stop by and see everyone on the 22nd since he will be getting general and have to recover before we can go home.

 

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Hi everyone. Well, I made it through my first full week of school and besides being EXHAUSTED, I am feeling really good. I love 3rd grade and I love my teacher Mrs. Schooley. This is definitely going to be a fun year!!! Tomorrow morning I am going to start taking violin lessons at school and in a couple of weeks I am going to take up golf....taking lessons once a week. Watch out Tiger Woods....here I come.

 

Medically speaking, there is nothing to really talk about. I have an oncology appointment next week and they will take some more blood for tests. Other than that, I don't have an MRI until sometime in early November. No news is good news!!!

 

Just a reminder.....my walk is this Saturday the 20th. If you can make it, you can register at the event. We are going to have a big team again this year and I am really looking forward to it. If you want to make a donation or know of anyone who would, I am halfway to my goal of raising $10,000. You can go to www.active.com/donate/LAWalk/blakerobinson and please pass it on to your friends. Remember, all the money goes directly to the Children's Tumor Foundation and towards finding a cure.

 

That is it for now. I will let you know how the walk goes.

 

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Day 123 Blake had a decent evening. He continues to show small steps toward being responsive again tracking some with his eyes, when opened and reacting to other stimuli. He however became very irritated today, as well is tried and chilling. Every little responsive thing he does has to take soooo much energy, so Blake takes a break. Mom gave him a good cleaning head to toe. She is working hard and so diligently only a loving mother can do, as we moved him around a lot. Then he had some time with the speech therapist trying to get him more responsive. Then he was pooped and was resting ever so peacefully, before his scxheduled 2 PM MRI. Then the physcial therapy showed up and I told her to work him out. She tried working with his legs and Blake became very aggetated, so we gave him a day off from PT and also OT. In fcat, if he could he might have swung at us! Levae me alone while I chill, we think he was saying and or it might have been a small discharge of sorts, however then when PT tried again by lifting one of his legs he reacted the same. Also when the nurse was trying to do some things with him he got his dander up again. This could be a good sign 'baby step' that he is becoming more aware of his surroundings. There is an old saying, "let sleeping DAWGS lie." Because of his irritability today and he keeps obstructs his air way with the back of his tonque, (like sleep apneia/snoring) they (we) elected not to do the MRI today. We do not want him put under anethesia, which means intubatuion for the 90 minutes or so to do a MRI. In other words we are hoping that he continues to wake up more so he can protect his air way, in any position especially laying flat, since you have to lie flat and remain very still for a long period of time for a MRI. A MRI is not critical at the moment, since we are very confident, since the recent tests done here fluid showed no toxoplamosis, so the antibiotics are working. This also should be the findings from the toxo lab in CA. we pray, which will take a few days. . They will do a MRI in the next few days when Blake is ready and only with only help from a drug that relaxes him and calms his brain. Another CT scan may in order as well, just to see the big picture, even though it doesn't show the detail of a MRI.

 

Bottom line, with any trama to the brain it takes awhile to recover. We are so thankful for another day, baby step progres and being with our son.

 

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Day 2 years 114 days from last transplant

 

11 days from kidney transplant

 

Sorry again for not updating faster.

 

Alyssa is doing great. We came home Friday evening. Thats were it all begins. She walked in the door and ate and drank everything we had in the house. Every time she drank something you could see her from the corner of her eye waiting to see if we were going to tell her enough. She walked in the door and saw Christopher. She picked up her shirt and showed him her scar and said look I got my kidney and I can drink whatever I want.

 

She woke up Sat. morning and I know it was crewel but she asked for something to drink and I gave her the normal little sip she use to get. She had a face on and said thats it and we all laughed and she knew we were just kidding. She is drinking everything and also eating everything she can.

 

Last night for dinner we had a whole chicken,scalloped potatoes,gravy and green beans. She ate everything and then woke up at 7am and ate the left overs. Then she has Nonas pasta. low salt ham,turkey,and lots to drink. She is gaining good weight.

 

I will update soon. We are going to CHOP tomorrow to get the central line out. I will let u know how it goes

 

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