Wednesday, February 27, 2008

Spokelet and Cycle for Life

This is a great site and a great cause. It was sent to me through a friend of Kris’ and mine. It’s jewelry for your bike but a portion of the money goes to the children’s cancer foundation – Cycle for Life.

The founder and his 6 year old son started Spokelet (which you can read about on their site). His son passed away last year of Neuroblastoma cancer after battling it for 2 ½ years.


You can check out the site here: SPOKELET



Cycle for Life

Tuesday, February 26, 2008

Paraneoplastic Cerebellar Syndrome

Paraneoplastic cerebellar syndrome (PCD) is a rare disorder caused by the secondary effects of cancer and is believed to be immune mediated. High titers in the patient's serum and cerebrospinal fluid (CSF) of autoantibodies directed against both neurons and tumor have been detected in some forms of this syndrome. These autoantibodies are considered the result of an immunologic response to tumor and may cross-react with cells of the nervous system, causing neuronal damage. Specific forms of this syndrome often are associated with specific antineuronal antibodies and tumors. The onset of neurologic symptoms and detection of these antibodies often precede diagnosis of the tumor; therefore, detection of these antibodies greatly assists the diagnosis of this syndrome and prompts investigations for the underlying tumor. Most paraneoplastic syndromes are rare, affecting less than 1% of persons with cancer.

Causes and symptoms

Most or all paraneoplastic syndromes are activated by the body's immune system. In response to a tumor, the immune system produces an antigen that is normally expressed exclusively in the nervous system. The tumor antigen is identical to the normal antigen, but for unknown reasons the immune system identifies it as foreign and mounts an immune response.
In general (although not always), PS develops in an acute or subacute fashion, over days or weeks. The nervous system disability is usually severe.

Treatment team

Due to the many manifestations of paraneoplastic syndromes, PS should be evaluated clinically by a coordinated team of doctors, including medical oncologists, surgeons, radiation oncologists, endocrinologists, hematologists, neurologists, and dermatologists.

Yes - Haven has an entire team! They're awesome!

Treatment

Because PS are considered to be immune-mediated disorders, two treatment approaches have been used: removal of the source of the antigen by treatment of the underlying tumor, and suppression of the immune response. Physicians often also prescribe a combination of either plasma exchange or intravenous immune globulin and immunosuppressive agents such as corticosteroids, cyclophosphamide, or tacrolimus. For most paraneoplastic syndromes, immunotherapy is not effective. Disorders involving the central nervous system, such as encephalomyelitis associated with cancer or paraneoplastic cerebellar degeneration, usually respond poorly to treatment, although they may stabilize when the underlying tumor is treated.
Disorders such as CD are usually associated with neuronal damage, and because they evolve subacutely and treatment is often delayed, neurons die, making recovery much more difficult.

Special concerns

It is important that caregivers for those with paraneo-plastic syndromes receive adequate support. The disorder typically emerges suddenly and without warning. The neurological manifestations of PS are complex and often require 24-hour patient care. Many caregivers will require quick access to information on caring for a disabled person. This includes information on social security benefits, insurance coverage, handicapped license plates, evaluations for physical therapy; handheld showerheads, and home healthcare and visiting nurses; and social workers and other support services.

Opsoclonus Myoclonus

As we dive in deeper and deeper in to Haven's world we are learning more and more about her conditions. I wanted to send all of you the best info I can. We are now working on the possibility that Haven could have Opsoclonus Myoclonus. Her condition is so indepth and out of the realm of just cancer (which is bad enough) that her doctors are researching constantly to find a way to treat her. One of their worries is that if they can't find a treatment the immune system could actually start attacking her other brain functions - as it has attack her sleeping, eating, bathroom, and weight functions. Now come the medical terms as I can't describe it that well:

This is a rare neurological disorder of unknown causes which appears to be the result of an autoimmune process involving the nervous system. It is an extremely rare condition, affecting as few as 1 in 10,000,000 people per year. It affects 2 to 3% of children with neuroblastoma.

Our doctors have only been able to find 10 cases in the world and one in the USA (Chicago)

Tumors in children who develop OMA tend to be more mature, showing favorable histology and absence of n-myc oncogene amplification than similar tumors in children without symptoms of OMA (Cooper et al., 2003). Involvement of local lymph nodes is common, but these children rarely have distant metastases and their prognosis, in terms of direct morbidity and mortality effects from the tumor, is excellent (Gesundheit et al., 2004). The three-year survival rate for children with non-metastatic neuroblastoma.

Haven had a more mature and favorable histology from her Neuroblastoma tumor - as to lead them to this possiblity.

One study came to the conclusion that: Patients with OMA and neuroblastoma have excellent survival but a high risk of neurologic sequelae. Favourable disease stage correlates with a higher risk for development of neurologic sequelae. The role of anti-neuronal antibodies in late sequelae of OMS needs further clarification.

Treatment

There is no known definitive cure for OMS. However, several drugs have proven to be effective in its treatment.

Some of medication used to treat the symptoms are:

ACTH has shown improvements in symptoms but can result in an incomplete recovery with residual deficits.

Corticosteroids (such as prednisone or methylprednisolone) used at high dosages (500 mg - 2 g per day intravenously for a course of 3 to 5 days) can accelerate regression of symptoms. Subsequent very gradual tapering with pills generally follows. Most patients require high doses for months to years before tapering.

Intravenous Immunoglobulins (IVIg) are often used with varying results.

Several other immunosuppressive drugs, such as cyclophosphamide and azathioprine, may be helpful in some cases.

Chemotherapy for neuroblastoma may be effective, although data is contradictory and unconvincing at this point in time.

Rituximab has been used with encouraging results.

Other medications are used to treat symptoms without influencing the nature of the disease (symptomatic treatment):


Trazodone can be useful against irritability and sleep problems

Additional treatment options include plasmapheresis ("washing the blood", showing similarities to dialysis) for severe, steroid-unresponsive relapses
.

Haven's doctors are giving her one more week to hopefully start fixing itself and then to decide how to treat but we have not noticed too many changes and it's been about a month.

Sunday, February 24, 2008

Update on Haven


We finally saw the ophthalmologist on Friday. To their surprise Haven has 20/20 in both eyes. They expected the left eye to be bad. They even tested her twice. So since vision is great. We are doing an eye patch for 2 hours a day. She is doing well with that.

A few things we have noticed over the past 3 weeks since surgery:

Haven now goes to sleep between 9 and 9:30pm
She doesn't yell when she talks
Her eating has calmed somewhat but still talks of food all the time
Personality has had the biggest change - she has been so loving and sweet and her voice is a sweeter tone.

Next appointment is an MRI on March 3rd and Oncology on March 4th

A little funny

Here are some cute funny pictures of Haven with Grandma Virginia. Grandma bought some clothes for Tovey. Tovey is her brown dog. He goes everywhere with her. All other bears have now been dressed as well. Grandma bought diapers, wipes, bottles, plates, clothing for all her animals. She loves them.





Saturday, February 16, 2008

Update from Friday the 15th

Well as usual we know these appointments take 90% of your day. We spent about 6 hours at JH waiting and talking and waiting and talking some more with Oncology. Her doctors went through all of her test results and went over a few other items with us. Leaving us happy, confused, and then concerned.

First off - her tumor was about 90% benign...great news. She was not found to have any cancer of the bones and everything was looking fine on the MRI's she had taken. With the entire tumor being removed she has been placed in a Stage 1 and everything is favorable. The only unfavorable element is her age. We received somewhat of a schedule for the next year and what should be expected from the cancer side of things.

Haven will have an MRI of brain and entire body every 3 months. First one being March 3rd.
Then every month she will have blood drawn for testing. This is all for the first year. After that it will either go to quarterly or every 6 months depending on condition. We will not need to do chemo for the cancer at this time.

YEAH...great news. But with great news comes bad news.

As her doctors (hours now) kept explaining and we kept feeling more and more confused. If Haven only had the tumor and the cancer we'd be looking great and pretty much in the clear. But Haven does not only have this. She has Hypothalamic Dysfunction and Paraneoplastic Syndrome. What does this mean? After 6 hours I can give a brief definition to the best of my understanding.

When Haven's tumor developed around age 2 her immune system kicked in to try to kill the tumor. However, not being a normal tumor, her tumor kinda morphed itself into a Hypothalamus. Meaning - it took on the same characteristics and hormones of her Hypothalamus. In turn this confused the immune system and it was unsure of what to attack. In the confusion, the immune system began attacking her actual Hypothalamus of the brain causing functions that most of us do not think about to stop working or change and did not go after the actual tumor. Notable changes - personality, bodily functions, vision, appetite control. Her tumor was actually giving her the hormones and not the brain. So as it stands right now her immune system is still attacking the Hypo.

Our doctors at JH have not had a case of this ever, and have made it clear to us that there are less than 1% of children in the world - meaning approximately 5 - 1o kids in the entire world that have had this. Not thousands but only 5 to 10. Haven now being one of them. Over the past few months our doctors have been working hard to find anyone that has had a child come in with similar symptoms as Haven....and recently they found a doctor with a similar case. He's in Chicago - had a child with the same disease - and found a way to treat it. Only this case was further along than Haven due to not knowing what it was. Our doctors are working on a way to make sure Haven does not get worse.

Another item they are working on is part of PNS - called - Opsoclonus-Myoclonus Syndrome. I have added a link to this on the side. I have not had time yet to fully research it - but her doctors are working on this as a possible item.

Treatment discussion: We're going to give Haven approximately one month to see if her brain can counteract the immune system and fix itself sortof. We want to see what changes are made to her by just removing the tumor. Already in 2 weeks we have seen major changes in her moods, emotions, and other areas. We're taking notes of anything we may notice - as we have noticed things that most people wouldn't. If her brain is unable to start fixing itself we have a few options that the doctors are looking in to with the doctor from Chicago.

1. Chemo - they would do chemo on this part of the brain to try to correct it.
2. Immune suppresant - pretty much shut down her immune system until everything in the brain starts to fight back.

Well right now #1 doesn't sound half as bad as #2 to us. But we are currently in a standstill. We could tell her doctors don't know what to do and are pretty much in the waiting game with us. We're very excited we are not starting chemo right now - yet I'm sad I went ahead and cut her hair off. I really wanted to wait until age 5.

We have another full day meeting with the doctors on March 4th - after her MRI - and will be able to give more updates as to Miss Haven.

Love to all

Hubby needs a break

So last Thursday - V Day - I felt as though my hubby needed a break from the crazy week of being with Haven on his own 80% of each day and wanted to send him away to relax. His mom sent me a text that she and Simon would be heading to Michigan for Grandma's 86th birthday! HAPPY BIRTHDAY GRANDMA! My brain went crazy - he hasn't gone away for an extended amount of time since December....he needs to go! He needs the break and I needed one on one time with my baby girl. So I sent him off to Michigan for the weekend and in usual fashion. I have this insanity thing that happens to me everytime he takes a vacation or I make him go....I change something. Now usually it's just my hair or I go shopping a lot....this time....I painted the house!


My bathroom was this aztec pink color (I picked but soon hated) and so I changed that to a tan brown. ABSOLUTELY LOVE IT.


My office was pure white...but then I started falling in love with this art I found on the internet and bought some of it. I have had it for about a month and have wanted to paint my room purple. WHY? Temporary insanity. It has turned in to a bigger project than anticipated but thought I'd share some pictures.


Haven also has been begging for HOT PINK in her room - currently her walls are light pink. So I bought her some hot pink to decorate her room. Those are soon to come. Enjoy!

Thursday, February 14, 2008

Video from tonight

From Haven


Happy Valentine's Day

Spreading the Love!

Happy Valentine’s Day everyone.

I want to thank a lot of people – so many to thank and only so much time for me to write out thank you cards. So I thought I’d post a bit of my thank you notes here:

My parents – of course, for talking me into convincing my husband to move to MD and helping us out tremendously in the numerous dream projects we conjure up! Just a warning…..we’re still designing! Also for being there when I need you and for all the great Korean food! Yummy! Can’t wait to head to Florida this summer with you. Should be interesting! :)

Mom/Bev/Grandma Virginia & Grandpa Simon – they were our first victims – I mean family members – to get the full Fowler household of craziness. Thank you so much Mom for coming out and spending so much time with Haven. I know coloring and reading books for 12 hours a day can be tiring…no joke here people! My daughter will read and color without moving for 12 hours at a time. You’d never understand how sitting on your “buns” coloring can be so tiring. If you walk away she wants to know why you aren’t coloring with her. I’m proud to say with just a couple weeks of this she is able to say the ENTIRE alphabet, she can write half of the alphabet, she knows the alphabet when I sign it to her and we can now count to 10 and almost to 20. She is even writing words on her own such as – yellow and blue and red. I tell her the letter and she writes it. We definitely do NOT have an ADD problem – so I can say she does take after me a little! :) Sorry daddy.

Dad and Jeannie – as our 2nd set of family members to visit. Thank you for being here for Haven’s surgery and sitting in that depressing waiting room for us. I just couldn’t sit there and wait. And it was a long time – about 14 hours total of waiting!!! Longer than you had to wait for me to deliver her! :) Thank you also for continuing my daughter’s education of her letters, numbers, and reading. Next visit I’m sure we’ll be working on Calculus (as this is as far as I went in math)….after that she’s on her own! Again thank you.

I have to thank all of Haven’s doctors. They are all tremendous and have given her so much love and care.

1. Dr. Cooper – Best pediatrician ever – calls just to check up on Haven and has told her to come in just to visit and say HI anytime. Love her
2. Miss Dawn – she is Haven’s nurse at her pediatrician’s. She is so awesome. Haven just loves her and talks about her all the time. Thank you for the email Dawn – we’re hanging in there.
3. Dr. Cooke – he is Haven’s Endocrinologist. He has been there since her seizure and was the one that found the tumor and transferred us over to Oncology.
4. Dr. Paz-Priel and Dr. Baggett – Haven’s Oncologists. They have been great in organizing us and getting us ready for everything before it happens.
5. Dr. Price – he is Haven’s surgeon – absolutely wonderful man with amazing talents. We really love him.
6. Dr. Rich and Dr. Rob – Haven’s anesthesiologists! PERFECT – great guys – very funny – extreme way of making Haven feel very comfortable before going under!
7. Mr. Ron – lab technician who since the beginning of Haven trying to get IV’s he’s been there. He knows her and every time he finds out she’s in the hospital he comes to find her and see her. She really trusts him and likes him a lot. Great guy.
8. Mr. Mike – yes I loved him – he was awesome. This was Haven’s nurse in the ICU. He was absolutely great to her and all the other nurses were teasing him because Haven was constantly yelling “Mr. Mike”…over and over again! Thanks for taking care of our girl.
9. Miss Erin – Haven’s night time nurse in the ICU – she gave Haven her first bath and made her a “Queen” hat. She is the sweetest nurse ever and took excellent care of our girl.

My grandma and Aunt Candy – thank you both of you for sending Haven so many books and stickers and Hannah Montana things. She’s starting to get a bit spoiled – only starting! Can’t wait until you guys are out here. She’s gonna love it.


Aunt Dottie and the Grosse Pointe Woods Fire Department – thank you so much for all the fire hats and stickers and t-shirts you sent to her. The books are awesome. She’s had a ball with them. We thank you so much for caring.


All of our family members and extended family – which to list would take me about 3 days – there are so many of you. Thank you to family members we have never met – we feel your love. A few:
1. Aunt Gill and Uncle John
2. Grandma Bist – she’s turning 86 this weekend!!!!! Party on girl! Love you!
3. Aunt Martha, Uncle James, Phillip, Luke, and Lindy
4. Uncle Kevin
5. Aunt Katie, Uncle Tommy (in Iraq) and Baby Stryder
6. UB and AL
7. Aunt Wendy, Uncle Mike (in Iraq), Mike, Lena, and Kristanna
8. Aunt Goo
9. Aunt Louise and Carl
10. Aunt Martha's family - thank you for your care package to Haven

11. My sweetest cousin Erin – thanks for the notes on the internet – you make me laugh!

Thank you to all of our friends for the cards, gifts, emails, texts, phone calls, and well wishes
1. Mike and Tracy – come visit anytime! :)
2. Scott and Melissa – (hugs and kisses sent your way) thank for your help Scott with everything– Melissa enjoy those soon to be TWINS! J Scotty – can you even believe it all started in #2! Amazing! I actually used to cook then….
3. Mike – ( aka. Torq) - miss you! I miss the days of living with all you boys in UB and AL's cabin (shhhhh, they never knew!) Tell the boys HI! Bet UB and AL didn't know that cabin could sleep 15 people! :)

4. Hayley and Mike – I’m happy to have met your husband, made lots of fun of him, and convinced him to work for free because I finally got to meet you! Although it took 3 months of talking to him to meet his better half. You’re awesome Hayley!
5. Jeremy and Tabetha
6. Eddie and Namrita
7. Miss Tina! Love you and miss you so much girl! See you soon!
8. Kathy – loving you – thanks for the uplifting emails
9. Bowman
10. Cameryn

11. Ali and Brown Haven - love you two so much! Miss you
12. Mr. Minimo – still don’t like Canada! :)


And people I don’t even know…..i get texts and emails from so many people and there are quite a few that I don’t know that have met me or my husband or have hung out with us a million years ago.

Again…..A BIG THANK YOU to everyone who is, was, or will be a big part of my daughter’s life! It’s great to know there are so many people out there that love her and pray (no matter how that may be) for her. Your love and thoughts are very much appreciated.

Sincerely –
The Crazy Fowler’s

Tuesday, February 12, 2008

Upcoming visits

HI

I have everyone asking about the visiting schedule. As of right now we have the following family members coming in to help with Haven through the below dates.

Mom (Bev or Grandma Virginia) - February 17th - March 2nd

My Grandma (Edie or Great Grandma) - March 2nd - April 5th (making her stay for my bday)

Once we have a schedule on the actual chemo and what we're doing it will be much easier to coordinate help with everyone.

We're very appreciative of everyone that can come out.

Monday, February 11, 2008

Ganglioneuroblastoma

A little more about Haven's type of cancer. As I said previously (or maybe I didn't, can't remember) there are 3 types of Neuroblastoma. They are listed below in the Pathophysiology section. Haven is confirmed to have Ganglioneuroblastoma (the middle type).

Ganglioneuroblastoma is an intermediate tumor arising from nerve tissue. An intermediate tumor is one that is between benign (slow-growing and unlikely to spread) and malignant (fast-growing, aggressive, and likely to spread).

Pathophysiology: The histologic difference between ganglioneuroma, ganglioneuroblastoma, and neuroblastoma is their stage of neuroblast maturation (Shimada, 1999). The less mature tumors, ie, ganglioneuroblastoma and neuroblastoma, are more aggressive and dangerous. These tumors have a higher neuroblast content and tend to occur in young children with the median age of 2 years.

Ganglioneuroblastomas are a mix of malignant neuroblastoma and benign ganglioneuroma. The prognosis for patients with a ganglioneuroblastoma is still relatively good. These tumors can spontaneously regress or mature. Patients with ganglioneuroblastomas often present with pain caused by either the primary tumor or metastatic disease and abdominal distention. These neuroblastic tumors vary widely in their biologic behavior. Features such as DNA content, tumor proto-oncogenes, and catecholamine synthesis influence prognosis, and their presence or absence aids in categorizing patients as high, intermediate, or low
risk.

Treatment consists of surgery and, usually, chemotherapy.
Despite recent advances in treatment, including bone marrow transplantation, neuroblastoma remains a relatively lethal tumor, accounting for 10% of pediatric cancers but 15% of cancer deaths in children.


Approximately 500–525 new cases of NB are diagnosed each year in the United States, making it the third most common pediatric malignancy, after leukemia and central nervous system tumors.

Causes, incidence, and risk factors:

This rare tumor has a yearly occurrence of less than 5 per 1,000,000 children.Tumors of the nervous system vary in their degree of differentiation. The degree of differentiation determines how the tumors appear under the microscope and whether or not they are likely to spread. Benign tumors are less likely to spread. Malignant tumors are aggressive, grow quickly, and often spread. A ganglioneuroma is a benign tumor, while a neuroblastoma(occurring in children more than a year old) is generally malignant. A ganglioneuroblastoma may be localized to one area or it may be widespread, but it is usually less aggressive than a neuroblastoma. The cause is unknown.

Symptoms: Most commonly, a mass can be felt in the abdomen, but this condition may also occur in other parts of the body.

Treatment: Because these tumors are rare, they should be treated in a specialized center by experts who have experience with them. Depending on the specific nature of the tumor, treatment can consist of surgery, and possibly chemotherapy and radiation therapy.

Locations:
Ganglioneuroblastoma tumors are found in the adrenal medulla (35%), retroperitoneum (30-35%), posterior mediastinum (20%), neck (1-5%), and pelvis (2-3%). Other locations, such as the thymus, lung, kidney, anterior mediastinum, stomach, and cauda equina, are affected less frequently and considered unusual. Approximately 1% of these tumors metastasize.

Mortality/Morbidity:
Patients with either a low- or intermediate-risk tumors have a relatively good prognosis. Children with stages 1, 2, and 4S tumors have a 3-year event-free survival rate of 75-90%. Children younger than 1 year with stage 3 or 4 tumors have a 1-year event-free survival rate of 80-90% and 60-75%, respectively. Children older than 1 year with INSS stage 3 or 4 tumors have a 3-year event-free survival rate of 50% and 15%, respectively (Coldman, 1980).

Grandpa Beard Off and Grandma Sing visit






Grandpa and Grandma came out from Utah to visit Haven over her birthday and to stay with her through surgery. Below are a few photos. It was a quick two weeks - too bad we had to spend one week of the two weeks in the hospital. Hopefully the next visit we'll be able to get out and do some things.

Our House...yes we're insane!

We want to thank those of you who have come out to visit with Haven and help out with her during this time. We are very appreciative of your time with her. There are a few things I’d like to let everyone know who plans on future visits to our “insane asylum” of a house, not to scare you off but to better prepare you. As our house has been described by Grandma Virginia – which I thought fit perfectly. “It’s like living with ‘The Munsters’ or ‘The Addams Family’.

Yes it’s true – we rarely sleep. We sleep when possible, which could be anytime of the day, in any position, on any type of furniture available. To be perfectly honest, we enjoy a night we can get a solid 3 hours of sleep over a night of broken 8 hrs of sleep. When we can sleep from 1am ‘til 4am without interruptions we can make it through the day. But if you take last Saturday – we were up 4 times changing diapers and a lot screaming and walking in Haven’s sleep between the hours of 1am – 6:30am – well that was not a good sleep. Even though length wise I was able to say I was in my bed from 11pm until 7am. This makes for a very grumpy mommy and daddy and even grumpier Haven.

We would also like to remind those of you who are “super” sensitive or take things personally that our house may not be the best place for you. Not that we do not want you to visit but our daughter has a medical condition. She has 3 separate diseases – all of which are related in a sense but not. If that makes sense. We would really appreciate those of you who do come to visit or help to take the time to learn about her conditions and do not assume they have just gone away because she had the tumor removed. Her tumor was an extremely “hormonal” tumor. The best example I can give – a woman who is going through menopause. Haven has had all of the hormones that have made her body exist since she was born completely removed. She is not on hormone supplements as a menopausal woman would be. So controlling her anger and emotions is something she is going to have to start learning. My child has NEVER cried until after this surgery. Kris and I have never in 4 years seen a tear come from this child’s eyes – being sad or falling and hurting herself. She has never cried.

Haven also has Hypothalamic Dysfunction – this completely affects personality, bodily functions, emotions, vision, speech, and a slew of other items. This is a 2nd priority to the doctors to fix – by all means not a 1st priority to doctors or mom/dad. If anyone knew Haven before the changes on 2006 you’d know this is not her normal personality. Therefore, when she tells me she does not love me or tells dad that the way he does something is not right because mom does it a different way – we can not take this personally. We hope everyone can understand this is the way Haven is right now – we will not be putting her on temporary medication to mask the problems at hand as we have to document everything for her bazillions of doctors.

Haven is confirmed to have Paraneoplastic Syndrome – what has it destroyed we do not know yet. We can only hope it has not permanently damaged anything of severe importance. We will not know this for some time. We can only ask that everyone have patience with Haven when working with her or visiting with her.

I haven’t listed it yet but we have confirmed she has GanglioNeuroblastoma. As there are 3 versions of this cancer.

Believe me – if anyone knows the stress of having a child with a severe medical condition in this family it would be Kris and I. We have been working on this with Haven for almost 2 years and we understand that even 2 weeks with her for family members is stressful. If you would like to visit and/or help out we’d totally appreciate it. We’d love to get one night of sleep a week or a couple days of work a week without the worries of Haven and what she’s doing. We can not put her in daycare and we can not afford for someone to come to our house – especially when we have so many family members who say they want to help out. No – she is not incapacitated right now – she does love to color for hours non-stop – but I know she would love to just have someone color with her or watch a movie with her. Anyone can call her anytime – sometimes I can get her to talk on the phone for a while.

We currently do not have any plans for doctors until Friday this week. We will do a post-op meeting with the surgeons in the morning and then we will spend the rest of the day/evening with the Oncology team. This will be to review all of Haven’s pathology results and to discuss upcoming chemo. As it was mentioned from the team, they wanted Haven to recover for 2 weeks and then we’d start chemo. So that puts us in to starting chemo probably next week – as long as all tests are in by Friday.

Talk soon
Love
M

Sunday, February 10, 2008

ROHHAD in Ireland

 I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...