Wednesday, April 29, 2009

Haven having fun

I came home tonight to my beautiful girl sitting on the floor waiting for Dad to make her dinner. He was making wheat pasta with homemade sauce (squished tomatoes and roasted garlic). She received a cute package with a doggie in it.

She has been very active lately - well active for her. She has been doing lots of crafts and actually up moving around. Very rare for her. She has been sleeping very sound every night. We haven't had any sleep talking or walking for 2 weeks. I can't believe it. It's been years since she's slept happy. Her food demands are less and less and she giggles. Lauren told Kris the other day she has never heard Haven laugh or giggle like she has the past few weeks.

So we are very happy.

Haven has been bugging me for a garden in the back yard. She wants to grow her own tomatoes, peppers, onions, and carrots. So we got a bunch of seeds (hopefully something will grow) and some chicken wire fencing. Last night I dug up an area big enough to get a few seeds in. It doesn't look like it on here but it's about 6' x 8'. It's pretty big and it killed my hands to dig. I wanted to get it done last night before the rain this week.

It was about 7pm when we started digging and Haven ended up running around the yard making friends with a baby bunny. It was cute to watch her chase this bunny - felt like she was 2 years old again.

Haven got this Easter house at Michael's with her gift card from the Cilona family. It came in a box filled with foam shapes. She and Lauren spent the entire day on Tuesday working on it. They had to put each piece together. It's absolutely adorable and I am actually surprised she sat there and worked on this for 5 hours. Love it!!!

Hope everyone is doing well!

Monday, April 27, 2009

Cardiology update

I spoke with our Cardiologist today. A few notes from him:

  • She has premature beats in the upper chambers - slight arrhythmia - not concerned with this at this time
  • Haven's heart beat is a constant fast beat and he was unable to distinguish between her being awake and being asleep
  • Around 9:30pm and later in the evening she had gone up to 150 bpm while sleeping
  • Around 2pm and 6pm he said she was down to 90 bpm while awake
He will request an annual thoracic echo be done.

Due to her heart not having a real pattern and to continually beat high while sleeping but having variations he has concluded that her problem is more Neurological than Cardiac. He is not concerned of her going in to cardiac arrest or any issues like that. He is recommending Neurology and Pulmonary monitor her closely and that we try to fix her sleep patterns.

We will meet with her Oncologist this Friday and review his notes and discuss where to go next. I am happy she is monitored so close by everyone. We'll definitely see something bad before it happens.

Haven currently sees:
  • Oncology
  • Pulmonary
  • Endocrine
  • Cardiology
  • Orthopedics
And thanks to Haven's Pediatrician - we are able to keep track of everything and get all of the doctor reports we need every 6 weeks.

She has MRIs to monitor her tumor every 6 months and will continue with Cyclosporin and Rituximab for the next year.

Next appointment is Endocrine on May 4th - we will discuss having her checked again for Cushing's Syndrome and checking her growth and need of growth hormone shots.

Love to all

Chicago Decision

I know some were wondering what our decision was on Chicago and at this time we have decided it is not the time to go.

I am aware that the doctors there are researching to find a gene linking a child to ROHHAD Syndrome. This requires us to take the PHOX2B blood test (costing $400 - which insurance doesn't pay) and have that sent to Chicago. Once they screen the blood we would then have to go there for a week of extensive testing. I don't even believe Haven could perform all the tests - she gets too worn out. They would also do a week long sleep study.

Maybe it would benefit everyone later - but it has no benefit to Haven now. It wouldn't change her current treatment that Johns Hopkins is doing. Especially since there is no treatment or cure for ROHHAD. Insurance also does not cover us going to Chicago for this testing - and with the testing costing around $150,000 (estimated).

So for now we will skip out on Chicago and continue to keep in close contact with all of our doctors here.

Sunday, April 26, 2009


today I am working on updating Haven's first 5 years blog....hope to have it done sometime today....there's a lot in 5 years!! :) You can read her birth over to the right under Haven Kristina.

Haven is working on her crafts we got yesterday -- It's extremely hot today - we went from full week of rain and cold to 90 degree weather!!! I thought we had for 4 seasons out here......seems as though we have 2!

If you are looking through Haven's FLICKR site (click here to check it out) please note I would not print from these files. The photos are a low res of the real thing. The real photos are on my shutterfly and I can get prints for you. Most of the flickr photos that were before 2008 will not print very well.

I have updated a million photos in the past 2 weeks to her site as I go through the shutterfly photos. Actually I have about 3,600 photos in FLICKR now. There are a have to pick a year or event from the sets to make it easier to go through them.

Check out this cute one I found -- her first experience with Orajel!!!

Love to all

Saturday, April 25, 2009

Finally sunny

It is finally sunny and warm outside so I'm taking Haven for a girls day. She received a Micheal's card and an Old Navy card from some friends and yesterday at work I won a Target gift card. So we've got a full morning planned for us. She wants to get some new crafts and a new movie at Target. Not sure what we'll get at Old Navy - we never go there.

This morning she has been going crazy wanting to text Mason --- so I have handed my phone over to her. I haven't seen it for over an hour and he isn't even awake yet. I'm glad she has fun texting him.

I am trying to wake up - Haven was up a few times last night and the alarms were going off on the machine so I was like a little zombie. All I see is a bedroom that needs cleaned (Miss Haven) and laundry that's piled up. But I think we'll ignore it until nap time so we can get some play time in!

Hope everyone is enjoying the weekend.

Friday, April 24, 2009

Cushing's Syndrome and ROHHAD

It is very true that no one knows exactly what ROHHAD "is" or is capable of being. There are cases of ROHHAD children also having Cushing's Syndrome.

What are signs of Cushings: Signs and symptoms of Cushing’s Syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates. Most cases of Cushing’s syndrome are not inherited.

Other common signs and symptoms include

  • severe fatigue
  • weak muscles
  • high blood pressure
  • high blood glucose
  • increased thirst and urination
  • irritability, anxiety, or depression
  • a fatty hump between the shoulders

This is very important to us and has been something I have watched for since October 2007. Recently I connected with another mom of a child who has very similar symptoms (and different at the same time) as Haven and other children we know. Susannah was officially diagnosed with Cushing's Syndrome: Micronodular Adrenal Hyperplasia

Haven was tested for Cushing's using the late-night salivary cortisol measurements in 2007. However, since being diagnosed with Ganglioneuroblastoma Cancer and ROHHAD Syndrome we have only done Cortisol testing one other time - this December after going off Prednisone.

I have emailed a few time with Susannah's mom to find out a bit more information before I went to our Endo doctor. Last night I emailed him. He found it very interesting and was happy that I brought Susannah to his attention as a note for Haven. We know ROHHAD has Cushing's cases too so it's always best to seek out everything.

I would like to add that Susannah is doing well and after almost 3 week since surgery she is recovering like a champ. She has lost 4 lbs since surgery, her mood swings have gotten better, her urination and drinking has improved. We are very excited for Susannah's family and constantly send our thoughts her way. I thank her very much for sharing her information with us - everything helps - even when you feel you can't offer much for us.

Cushing's Help and Support

Cushing’s Support and Research Foundation, Inc.
65 East India Row, Suite 22B
Boston, MA 02110
Phone and Fax: 617–723–3674

The National Endocrine and Metabolic Diseases Information Service
6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 1–703–738–4929

Thursday, April 23, 2009


Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation and Neural Tumor Syndrome

Whew....say that 1 time fast!!! Everytime I go to a new doctor I have to! Then I have to explain it and start at my pregnancy all the way through her first 5 years.

This is what Haven would be diagnosed with IF doctors agreed. There are articles on both and rebuttals on both. It really all depends on the "type" of doctors I think you meet with.

Our doctors believe in the ROHHADNET diagnosis over just ROHHAD. They believe all children with ROHHAD have had or have neural tumors. Some may be just so small you can't detect them - even with an MRI. Or maybe you've read that Neuroblastoma is one of the rare human malignancies known to demonstrate spontaneous regression. In this case you have a tumor, never know it, and by the time something else shows up the tumor is gone. If that's the case, you will never find a tumor.

So when we go in to a doctor I realized last week that I can't just say "Neuroblastoma" as a general diagnosis of her cancer. There are 3 types and it's important to know which type because "Ganglio" is the one known to be associated with ROHHAD. Pulmonary explained to me that this is a very important note and I shouldn't use Neuroblastoma in conjunction with ROHHAD.

So I felt this was an important part to I dive deeper and deeper in to our medical world.

Cancer is not the same for everyone

This is in response to many people who look at me like I'm lying that my daughter has cancer or that she is on or ever had chemotherapy. Or they look at my daughter and say - she doesn't look like she has cancer or say she doesn't look like she's on chemo.

I would like to explain that there is a "stereotype" of what you "should" look like when you have cancer or are on chemo. I too was unaware and believed that cancer means you look a certain way or that chemo meant you looked a certain way. Because that's what we see.

I'd like to explain that having "cancer" does not mean you are skinny and frail. Some and maybe most do....but this is not a rule. Being on chemotherapy does not mean you throw up or you lose your hair or you become emaciated.

Haven has Ganglioneuroblastoma Cancer and ROHHAD Syndrome. This is an odd group of issues. What is more important is that she does actually have BOTH. ROHHAD Syndrome is known to have Ganglioneuroblastoma....but it's EXTREMELY rare to find a child with both. Her cancer is a known cancer but it didn't affect her the way many of the other children are affected. She has a Paraneoplastic Syndrome or ROHHAD Syndrome. The ROHHAD causes extreme weight gain (not usual with a cancer patient). Again she falls under the condition called ROHHADNET.

Her chemo - which I didn't know until January of this year - is a chemo that actually GROWS hair. She will not lose her hair on this chemo because a side effect is hair growth. Kris was actually wondering if it would work for him because her hair has gotten so thick.

There are many forms of chemo and many cancers they are used for. Sometimes one is used or many are used. Haven has been on 3 different chemos in the past year. The only chemo that made her sick was Cytoxan and we had medication to counteract the vomiting. Sometimes she would get sick but 99% of the time it just made her tired for about a day.

Some chemos aren't even used for cancer. A low dose of Cyclosporin is sometimes used for Psoriasis. Which seems crazy to me....but hey it worked on someone and now they use it.

Anyway, learning about cancers and chemos has confirmed my belief that you don't judge a book by it's cover and you don't assume everyone reacts to a disease or treatment the same way.

Meeting with Dr. Cooper

Today I had an afternoon meeting with Dr. Cooper, Haven's Pediatrician. We meet about every 6 weeks to review Haven, where she is and was. We go over any notes that I have and get them in order for the other doctors Haven visits.

We reviewed the notes from Cardiology and Pulmonary and what the doctors had written in their reports. I got my copies for my files. She said I could probably copy their upper notes to take with me to any new doctors so we do not have to go through it all over and over again! Good idea.

We're still waiting for anything from Cardiology. I mailed the halter back to them on Monday so I'm not sure when they would've received it.

We have a meeting with Endo on May 4th so we reviewed some medical info from Susannah's mom and thought it would be a good idea to mention to our Endo. Susannah just recovered from surgery for Cushing's Syndrome. Which Haven has been tested for a few times. She copied me on an email she sent to my favorite mom in Europe and a few areas caught my attention!

We are doing well on the Pulse Ox machine. We know how to use it and I am confident in the results now - after talking with Pulmonary earlier this week. I keep a detailed log of her stats throughout each night.

I discussed Chicago with Dr. Cooper today and it really helped to talk to her as she has no bias to go or not go. Kris and I discussed it tonight and I believe we have come to a decision. Kris will discuss it with Oncology tomorrow and then we will confirm what we are going to do. We have been thinking hard on this decision and I have been working with our case manager.

I found some of Haven's old records yesterday while digging through boxes. Some reason I feel like I already said this but don't remember. Anyway, we have her blood records from July 2006 and two of her MRI reports from 2007. So I will scan that in and email to all of her doctors.

Until the next doctor appointment tomorrow - that is today's update!

Love to all

Wednesday, April 22, 2009

So many people to thank

and I've never met them.

This banner was made for Haven as she was featured today on another blog! Thank you so much for featuring our baby girl!

I have to say the mother that featured Haven is amazing to me. She is part of a family of 11!!!! She has 6 boys and 3 girls.

Refusing naps

Haven is doing very well on the pulse ox every night. We have lots of log books now...I keep the pulse ox one next to her machine by her bed. Then we have one for blood pressure and then I have one I keep my journal notes in. Haven is still refusing day time naps due to having to be on the machine - but she will crack one of these days and I will get some readings during the day.

I did find some paperwork from my hospital visits when she was a baby. Well...a baby meaning 2 1/2 years old. Had lots of blood work that was done then. I was digging for pictures and found it all. So I'll send that over to Oncology to review. Gives them something from July 2006 when we started this. I also found 2 of the MRI reports that I can send as well. So that is good.

I spoke with our case worker tonight about Haven going to Chicago. We still need to discuss with Oncology before making our final decision.

We made soap tonight.....and I turned blue. My hands are bright blue from the dye for the soap. I squeezed the bottle and the blue that was nice! I should look nice and smurfy tomorrow.

Mason and Haven text each other now. It's cute but I think both Julie and I start to go a bit nutty because they text very slow and we have to write it out and then they change their mind. Haven wants to fill up the entire screen with smiley faces. It's cute, believe me. Mason also called to talk to me tonight. We discussed the important things like American Idol and dinner.

Hope everyone is having a great Wednesday! :) Love to all

Monday, April 20, 2009

Spare time.....

So I had about 20 minutes of spare time tonight!! Whoo hooo....I figured out how to do a slide show. You can see it to the right. I made a quick one to see if it worked and it did.

Haven's blood pressure was up pretty high (from her normal readings) today. I'm not sure what that is - could be the chemo or could be anything. We also have a couple of infected toes again. So we did a super soak and then put peroxide on them. Then I have to put her Altabax lotion all over them. But to be honest, I'd rather do this than have surgery on the toes. Pulmonary is concerned about Haven getting more anesthesia than necessary and most likely that will be highly noted in her files now - more than before.

I have been working on Haven's site. I'm going to update her story a bit more in the Haven Kristina section to the right. I have also put her slide show over there. It's in the best order I can do for being half asleep with one eye open! :)

Anyway, I just want to thank all the wonderful moms that write to me, comment on Haven's blog, or send me a message through facebook. I am very happy to have started this blog - 1 for Haven and 2 for the ability to help moms connect with each other.

I have a close friend mom hanging out in Europe who emailed to get info on another mom here in the states. I happened to have her info and knew about her daughter and was able to connect them. This is what I hoped would happen and it's great that everyone gives info to each other about their kids that may just help one of us in our quest for a treatment or even a proper diagnosis!

Love to all......I'm going to sleep now!

Thank you everyone for your help!

Thank you everyone for helping me with the pulse ox machine. I have been bugging Julie for 3 days now about the machine and types of pulse ox probes she uses. I have received quite a few emails about the machines and heart rate related information.

I talked to Pulmonary today and they also answered a few of my questions about the machine. She actually thought the doctor showed us how to use while in his office. I found out that Haven needs to be on the monitor every time she sleeps - not just at night. So this means naps and Haven wasn't happy about that. So she refused to take a nap today and stayed awake all day so she wouldn't have to be on the machine. I also have to make sure she has a constant pulse (no skips) for a full minute before taking the actual reading or it won't be correct.

Thank you Dawn (in the comments) I did find the number on the side of the machine and Pulmonary also gave it to me today. I was a bit concerned when they had to call insurance to find out why I only received 5 probes. But - again - as it was not explained to me - we need to use the same probe and change out weekly. So the 5 probes are actually a full month supply. I have to agree with Dawn - the beeps comfort me but also keep me awake. I know Julie says they mute their heart beats too and will hear it if it alarms.

I also want to thank Maureen - I received a huge box today with 4 pads and 3 packages of diapers. Haven loved the feel of the new diapers. She said they didn't hurt her belly or bother her scar. She was pretty excited about them!!! Thank you guys. She was also excited to have the new pads. We've been using puppy training pads - and although they work somewhat they have this horrible smell that really makes you feel a bit ucky. I always have to spray them with something. The smell is to attract the puppy to go to the pad.....but it smells horrible and I don't think it's good for Haven to sleep on them.

Sunday, April 19, 2009

Pulse Ox Machine Question????

While watching her oxygen I am able to watch Haven's heart rate. Now the machine is hooked up perfect and we have excellent readings - nothing is malfunctioning. Haven is laying perfectly still.....

My question to anyone else on Pulse Ox: Haven's heart rate seems skips sometimes. Sometimes it does a double click really fast and sometimes it seems to skip a beat. Does your machine do this? Is something messing up even though all lights are green and no alarms are signaling?

Sometimes it goes...da...da..da..da..da..dada..da..da.........da..da..da..da..dada..da..da..da..da..da..da.

I guess I just have to wait for Cardiology to get back to me on the over night monitor they put on her. I have been reading up on Tachycardia to understand it, as this is what she went to Cardiology for. Usually with ROHHAD a child will develop Bradycardia (slow heart rate) - I have not seen reports on Tachycardia.

Ugggg....I really just want to be able to sleep not stay half conscious!

Bed Pads and Laundry

So...when you are lucky to have a ROHHAD child you get to do A LOT of laundry. I probably average 10 loads of laundry every week. I probably have more than 20 towels in the laundry room at one time. Our children get dehydrated so fast having ROHHAD that they have to keep drinking. I think Haven drinks a couple of gallons of water a day and her pee is still yellow and she still tests as dehydrated. A ROHHAD child can pee 2 to 3 liters of fluid at night.

So imagine waking up 2 or 3 times a night to change the sheets and pillow cases....sometimes a comforter. And it's not only wet - it's dripping! I have plastic on her mattress, plastic over her pillows, puppy training pads (because stores don't sell bad pads for kids), and towels in the bed to soak it all up. Still some nights everything is SOAKED! We've had to do complete showers in the middle of the night.

Well I have been checking out the Grayson bed pads for adults. They can hold up to 1600 cc of fluid but they are expensive. Maureen, Sophia's mom, is awesome. She sent me a few of these bed pads to check out and some adult diapers to try. I have been hesitant about buying adult diapers because I wasn't sure if they would fit her right. So this will be perfect to try out. I know some of the mom's double diaper.

Also - if you haven't checked out our links to the ----> right...........these are randomly updated with events, news, and our friends. Sophia's school is having a fundraiser for her and I would love it if you checked out her website and read about her fundraiser. Anything helps and they are only asking for $5!!! Check it out!!

Thank you Maureen for the help with the diapers and bed pads.....can you believe I'm actually saying "I'm excited to try bed pads and diapers!"......what our life has become!

Sleep well tonight.....


Well....I am exhausted. Friday was a long night with checking Haven's stats on the O2 monitor. Then last night I did a check at 9pm, 10pm, 11pm, 12am, 1am and then finally fell asleep to have some crazy weird dreams. Woke up at 3am and checked her readings again. Heart rate was around 110 and oxygen at 94. Then Haven got me up at 4:30am because the alarm was going off on the machine. At that point I realized I never heard the alarm which is a good test and means if there is an emergency I won't hear the alarm.

So we're gonna have to work on that tonight. I believe it alarmed because I'm trying to spare the use of the bands. We only got 5 with the machine so I have to find out how I'm supposed to get more. I really wish someone would've explained something to us about the machine and who we call for supplies.

This week should be a calm week. Haven will be in Oncology on Friday. We'll be discussing Chicago and our thoughts and feelings regarding that. We're still discussing how we feel about it and are still not sure what we want to do. There is a lot of work to do with insurance. I spoke with our case worker on Friday and there are a lot of hoops to jump through to find out if it's even a consideration. That will be discovered throughout the week.

We hope everyone had a wonderful weekend. Love to all.

Saturday, April 18, 2009

1st night on the pulse ox machine

Yesterday we received Haven's pulse ox machine. It is similar to the hospital portable machines. Needless to say, it came to the door and no one showed us how to use it. So when I came home I figured we'd better practice before we got to tired.

After about 30 minutes of playing with it I called Julie and begged for her help! Hey, she's a pro right! There was a moment of concern and laughter as I checked my reading. My oxygen was coming in at 75 and my heart rate (sitting on the floor) was at 165. So we were certain that I would be heading to the ER as I should be passing out! :)

Haven's machine is the "band aid" type that wrap around the fingers or toes. So my dad came over and we decided to check his readings. Wha La! He figured it out. I kept reading the 50 page manual that came with it and realized something important.

"Cold fingers or toes may cause a false reading"......well there is only one thing left to do. The hot foot! All of her other fingers and toes are always cold. The hot foot worked!!!!

So last night I took her readings through out the night as instructed. The Cardiologist wants to see her down in the 80's while sleeping and we want to keep her oxygen around 95. Here is what we had:

10pm: O2 levels: 98 and heart rate: 97 (excellent)
11pm: O2 levels: 94 and heart rate 120 (she was beginning to talk in her sleep too)
12am: O2 levels: 97 and heart rate 122 (still only slightly talking)
3am: O2 levels: 98 and heart rate: 162 (we were really talking in our sleep at this point)
7:15am: O2 levels: 97 and heart rate: 133 (we were awake and ready to get up)

So am I happy that I know what's going on with her at night? YES. I am happy with the oxygen levels - it will be interesting to watch and compare each night. I am not happy with the heart rate while sleeping. But I can say that I felt more comforted knowing she was hooked up and would alarm if anything was crazy.

We are also checking her blood pressure twice a day. We seem to run normal in the morning and high at night. This is what I have been noticing lately. Will be good to discuss with Oncology next week.

Well it is about 75 degrees today. Haven and I are making care packages for our friends and then we're going to head to the post office and to Walmart to load up on diapers and pads. Dad is out biking today....gotta soak up the sun before the Seattle rains hit again next week.

Has anyone ever used the Grayson washable bed pads? I found some on the internet - they are $9.00 each pad but I will buy some if it actually works.

Love to all - have a great weekend.

Thursday, April 16, 2009

Pulmonary, Oncology, Cardiology - Oh My!

Well we made it through. The past two days have been filled with lots of doctors and lots of talking!


We were very happy with this appointment. I really like our doctor. He listened to everything, explained the difference between obstructive sleep apnea vs. central hypoventilation and how they see it in a sleep study, he had talked to Oncology before meeting with us so he already knew about Haven and pulled up her records while we were in there. It was great. We spent over an hour with him.

A few areas discussed:

Haven's breathing and where she is right now: he noted that her sleep studies were pretty good right now and that we would continue to monitor her closely for any changes. He said her last sleep study showed her highest CO2 level at 49 and when she starts to pass 50 is where the concern would be. We have a sleep study scheduled for August 15th and a follow up appointment with him on July 23rd.

He did say he didn't expect Haven would suddenly stop breathing in the next month or even the next 6 months but then reminded us that he can never say that for certainty because we don't know how ROHHAD acts in every child. At most, he said she would probably only need to go on a bi-pap machine in the next 6 months but didn't think we should worry about that yet.

He mentioned bringing Neurology in now to monitor possible seizure activity during her next sleep study. Doesn't mean she is going to have a seizure but Haven has a history and since this hasn't been monitored in over a year he would like another record of her brain in that department.

He is a bit concerned with her sleep walking and talking. More for her safety than anything plus we were sure to explain to him that although her sleep walking drives us crazy and doesn't let us sleep - it also comforts us because if she's screaming and talking we know she's breathing.

He ordered a pulse oximeter for Haven to use at night while sleeping. They said it would be set to alarm if she reaches 94....I am sure we will hear many alarms as Haven is usually around 95-96 and a little drop will cause an alarm. Kris received a call tonight about the delivery! I did briefly discuss her sleep walking and machines but he was not worried. We will have to spot check her stats - we'll have different times at night that we will have to record them.

We discussed her ABG results that were done while under anesthesia. He is almost discounting them because the readings would be altered by the intubation and oxygen given to her. So we will have to have an ABG test while awake. We did not do this today - as he wanted Haven to meet him first without pokes and it hurts a lot.

He is highly recommending us to go to Chicago to meet with Dr. Weese-Mayer. He said he has talked to her and discussed Haven. Oncology has also talked with her about Haven. He is concerned that there could be something they are missing and wants to have a full evaluation done by Dr. Weese-Mayer and then get the results back here. He also would like to have Haven's full studies in the research paperwork to help other children with ROHHAD. I have emailed the team at RUSH (thank you Julie for all the paperwork). We'll discuss this with Oncology next week.

We discussed Haven's allergy to Ketamine. He absolutely doesn't believe it's specifically Ketamine related. He told us that a ROHHAD episode (Respiratory Failure) can easily be triggered by ANY anesthesia. Haven must be required to be intubated without question at any procedure done. He told us to make sure when she does have anesthesia that we require them to monitor her CO2 levels while giving her oxygen. He said CO2 levels can rise dangerously if not monitored at the same time in a ROHHAD child. We have agreed to have her intubated on every anesthesia procedure due to her seizure activities and respiratory failure a few times while under anesthesia.

The funniest thing we heard: he said he bets that Haven can stay under water for a couple of minutes and have no problem at all. She lacks the function of panic that would tell her she needs to get to the surface to breathe. She can withstand a high level of CO2 - which a normal person can not and they would rush to the surface. We didn't take him up on the bet!


We went to Oncology following Pulmonary. Haven needed to have her levels and blood work done. When we met with Cardiology yesterday he wanted to have her tested for Anemia. So this was done today as well. We will not have results back until next week. Everything went as planned here.

Child Life talked to us about Sunrise Camp for Kids with Cancer. So we are going to sign Haven up in the 5 year old camp. It's a daily camp (she doesn't stay over). It's only for kids with Cancer. There are Pediatric Oncologists and Oncology nurses on site. Our own Nurse Katie volunteers at the camp and Kim at Child Life is there. We think it will be really good for Haven. It's free for her to go and she will have a blast doing crafts. This will be in August.


Next we went over to Pediatric Cardiology to get Haven hooked up on her holter. We are monitoring her heart rate. She runs high so the doctor said he would like to see her have fluctuations and get down in to the 80's during sleep. We will get the results from him next week. He doesn't want to put her on medication because she is already on so much. He wants to have an Echocardiogram done every 4 - 6 months to monitor her.

Here is Miss Haven with the heart monitor on. She was happy it was in a little purse. We were worried it was going to be too big but they said this is the size everyone gets. The monitor is in the little bag and it hangs around her neck. She has to sleep and everything with it on.

Here are a few of the leads. These are on her upper chest. There are more that are up on the side of her neck and all on her belly area. She is doing pretty well but she keeps saying the tape is pulling. Luckily we don't have a hairy chest to worry about. She is definitely concerned about taking all of them off.

She is always concerned about someone putting something sticky on her port and messing it up. So she always tells nurses and doctors not to touch her port and to make sure stickies don't get on it. Luckily - we didn't have to have any there.

Well, this is long but it's been a long day. I'm going on my 4th day straight of a constant migraine. I hope Haven sleeps tonight. And I'm super excited it's Friday tomorrow and NO DOCTORS!!!!

Love to all!

Sleep Talking Episode 5000

So here is Haven...sound asleep at 7pm yesterday. My dad was having a wonderful conversation with her. This went on for over 40 minutes.

Mom and Daughter

These are pictures of me and Haven at about the same age. I found my picture last night....Can you guess which one is me?

We're both about 18 months old! Where is my hair?

Wednesday, April 15, 2009

Very Good Appointment

Well I believe we are happy with our appt today. I am very happy when
doctors listen and don't assume.

We discussed Haven's diet, which is, under 1000 calories, no sodium, low
cal, no sugar, limited processed food.

We discussed her sleep issues briefly and there is a concern of her
sleep walking and being hooked up to monitors.

We discussed briefly our process of finally being diagnosed. He
couldn't believe we were only told that we were overfeeding her for an
entire year and three different hospitals and 4 MRIs. Not an acceptable

We talked about how the doctors at JH found her cancer and ROHHAD.

Sleep studies were talked about and I believe he kinda agreed with me
that one sleep study with partial sleep is not enough for Haven because
she doesn't really sleep anyway. But we'll meet with Pulmonary tomorrow
to discuss all the breathing and sleeping issues.

Haven's heart was a bit high today when they checked. She also had an
Echo done. We will pick up her heart monitor tomorrow. She will wear
the holter so they can get a constant reading of her heart.

The doctor told us if she goes into the 140s its ok AS LONG AS she drops
to the 80's or so when sleeping. He wants to see a lot of variations in
her heart at different times of the day. He is happy with her blood
pressure medicine. But said a constant high heart rate is to much
stress and causes damage eventually leading to failure.

Haven did very well. She is always a bit freaked out when doctors push
on her belly. She doesn't like them messing around her scar. Which, by
the way, her scar across her belly is healing awesomely! You can just
barely see it and it stretches across her entire belly. Her port scar
is still pretty visible.

Will update more later!


Tuesday, April 14, 2009


Tomorrow will be our first meeting with Cardiology. I'm not sure what will be discussed or how we will begin bringing them in to the mix of Haven. But I have been concerned about her heart so I'm sure it will be a good meeting. Our appt is at 8:15am so it will be an early leave to get through traffic.

I'll update if we have anything to report.

If you look to the right sidebar - I have slowly been updating and organizing blog posts. As you can see it is now giving me more work to do but easier to keep updates on everyone, news about our illnesses, and cool stories from our friends. I have a lot more work to do and will continue to update each one.

thank you to everyone for always checking up on our baby!

Monday, April 13, 2009

Sleep Walking getting crazy!

Sleep walking is what keeps us up now!

This past week we have been fighting robots. I don't know why but we are. About a week ago Haven had a horrible sleep walking episode that lasted over 40 minutes long. I had just gotten in the shower and I hear a scream (or I thought I did) but I ignored it. Then I felt thumping and what sounded like running. I stopped, listened, nothing. So I pour a bunch of shampoo in to my hair and there it is again. Major thumping and running with a door slam. I get out, yell for Haven and I hear this quiet - "hello" come from her room. She runs in to the bathroom with me - SHE'S COMPLETELY ASLEEP! So I have her hold on to the sink and not move. Finish my shower and during this entire time she is telling me about a white robot that is chasing her and looking for her. I get her in to the room, tell her dad that there is a robot chasing her, he informs me that he already knows from her horrified scream as I went in to the shower. Remember, the one I ignored. He destroys the (imaginary) robot and she is happy and back in bed.

Then about 3 days later we have another robot incident...which leads in to another one that kept her up freaking out until 1:30am. I am done with robots. I have no idea what robot she is talking about. But the hallucinations or sleep walking episodes are making me crazy!

Haven has some crazy episodes - we've had a few nights of bugs being all over her and having to wipe down walls and her to get rid of the (imaginary) bugs, we have Spongebob chasing her and staring at her - so he is no longer on her walls, we've had angels chasing her around and staring at her - so we removed the angels that were on her walls. She's had some other ones that would really freak you out so I will leave them off here - as they have really freaked me out many times.

Now my question remains - if my child is a major sleep walker with violent episodes - how do I put her on an O2 and CR monitor during her sleep? Guess that will be discussed this week at Cardiology and Pulmonary!

Sunday, April 12, 2009

The Bunny Visits

Happy Easter everyone!!

Last night was pretty funny. Haven was actually terrified of the bunny before bed. She was extremely worried he would come in to her room while she was sleeping. She was afraid to have her TV on because he might think she was awake and she wanted her bedroom door locked. I couldn't stop laughing. I reminded her that the gate would be up in the hallway and he definitely wouldn't go past the gate and I had to shut her door most of the way. Around 10pm I went in to check on her and she had the blankets over her head and was sweating like crazy and she was awake. I convinced her to take the blankets off and we covered her eyes with a cold wash cloth. This let her finally fall asleep.

Grandma Virginia sent Haven some more Easter decorations for her tree and we put those on in time for Mr. Bunny. The eggs are just beautiful.

The bunnies in the tree held dollar bills - Haven decided a few weeks ago that she likes to collect dollars. She gets so excited when she gets a dollar in the mail - so the Easter bunny just had to leave some dollars for her.

She woke up around 6am and was so excited to see if the bunny came. She took off running out of her room and checked under her Easter tree. Hmmm...seems the bunny brought a few jelly beans! :) She did get to have a couple since it is one special day. He also left little eggs filled with random items all through the house that she had to find.

It's 1:15 and she is currently on her 2nd nap of the day. Her plan when she wakes play with her barbies. So funny that she plays with Barbie now. I think she spent 3 hours this morning changing their clothes.

Love to all - hope everyone has a wonderful Sunday! :)

Saturday, April 11, 2009

Waiting for the bunny's almost time for chemo (8pm) but we have been waiting for the bunny all day. Haven has been hoping for certain things from the bunny tonight and has been wishing a lot, she says. Grandpa B Honey took us all out to dinner at Haven's favorite place - Cracker Barrel. She likes this restaurant because it has a store! :)

Then we went out to Target to get her to walk around for awhile. She had so much fun just browsing we ended up staying at Target for about 2 hours. I have never seen a 5 year old have more fun in the pots and pans section - I was bored out of mind - but she had fun. She taught me all about certain pans and what they are used for. Then she showed me the as seen on TV section - they had the snuggie, the sliders, and the pedi-egg. She really wants a pedi-egg --- why - I have no idea.

But we're getting ready to take the evening dose of medication and then happy dreams of eggs and bunnies!

We hope everyone is having a great Easter weekend. Love to all!

Friday, April 10, 2009

Haven's Diet

I would like to ask and stress that if you are sending something to Haven PLEASE no candy! We appreciate the gesture but Haven is not allowed to have candy. She is on an extremely strict diet and every once in a while we will decide to let her have a treat but we can not have candy or sugar foods in the house. Haven is on an extremely low sodium, minimal sugar, and low calorie diet.

Yes she loves to receive candy but it must immediately go right out the door. It causes many fights and arguments in our house because once she sees it that's all she can think or talk about.

Please do not send candy or salty food. We just can't have it here. Sorry to sound mean but it's for her health.

Thank you

Wednesday, April 8, 2009

We finally like Barbie......

Haven decided today that she finally likes Barbie. She has NEVER played with dolls in her entire life. The other night she played with a wooden doll that had magnetic clothes and really had fun. Today she received a package from Grandma and Grandpa in Utah with what looks like a Bratz doll (hmmmm.......) and she has been playing with it for over 2 hours.

She even got her other dolls out that people had sent to her at Christmas. You may think I'm crazy because I'm excited my daughter is playing with dolls......but she NEVER has ever before. She never plays and over the past 2 weeks she has been playing like crazy. She sits by herself and just plays.
She plays, she talks more, she has a sweeter personality, she asks for food less, she SLEEPS all night long.......I am a believer in this chemo treatment. I believed in it last year and I feel the same way now. My daughter has never laughed like she does now and has even teared up during movies. THAT IS AWESOME!

Oh....she got a Walmart card in the mail yesterday from Laurie Bowes --- so guess who has to go buy clothes for her Barbies tonight! :)

Strabismus - FIXED

Everyone has been asking me how Haven's eyes are doing and how they look.....check her out! She is wearing her new robe Great Grandma Ohio sent to her. She has been begging for robes! She actually looks like a little Smurf to me! :)

Her eyes are doing great. She handled surgery and recovery AWESOME! She did want to know EXACTLY what they did to her eyes. I didn't tell her - I told her I'd tell her later when she's older.

You'll notice one pupil is much larger than the other. During the past year Haven's vision in the left eye went from 20/25 to 20/70. We began Atropine drops last November to get her prepared for surgery. After surgery they tested her eyes and her vision has started to improve slightly. THIS IS GREAT NEWS TO US!!! So we are back on the Atropine drops twice a week.

What they do is actually blind the good eye (big pupil) and force her brain to learn to use the bad eye again. The doctor wants us to make sure she is doing lots of workbooks or coloring books as it will help with the vision more than anything else because it makes her have to focus more and work harder at it.

Tuesday, April 7, 2009


Cardiology appointment set for April 15th

Pulmonary appointment set for April 16th

Endocrine appointment set for May 4th

Oncology --- ha ha ha....we see them all the time


I had to switch emails due to my numerous offshore accounts and lotteries I've won in the past few months since having my ATM card stolen. Please give me a few days --- I can't even figure out how to add a contact to my address book! :)

Sunday, April 5, 2009

ROHHAD: Cardiology -- Pulmonology

These are the two next big doctor appointments we have.

Cardiology has been added as an extreme importance. Haven's resting heart rate has been staying around 150. It has been constant around 130-150 for over two months. But I remember her in the hospital last year and it stayed around 140. We should find out next week when this appointment will be made. She will wear a monitor around her chest to monitor her heart rate while awake and active. I received some emails about heart rates and emailed NIH and our doctors. The first number being on the low end (some of our friends stay around this when resting) and the second number being on the high end.

EDIT: Just heard from the doctor - they use the Harriet Lane Handbook for resting heart rate calculations:

Ages 5 - 7:

Low End: 65
Average/Normal: 100
High End: 133

According to NIH resting heart rate:

Newborn infants: 100 - 160 beats per minute
Children 1 to 10 years: 70 - 120 beats per minute
Children over 10 and adults (including seniors): 60 - 100 beats per minute
Well-trained athletes: 40 - 60 beats per minute

Her doctors are also putting in a referral for a Pulse Ox monitor. We didn't believe we needed one only a month ago but on Friday I received an email from her doctor and the referral has been placed. She will wear this at night when she is sleeping - it will monitor her heart rate and oxygen. I am very relieved to have the doctors ordering this. I have been extremely concerned about her during her sleep. This will at least ease my mind a little.

Pulmonary will be on April 16th. This will be a very important meeting and our first with the doctor. We will discuss all of Haven's sleep studies, the ABG, and other information that I have received and noted from the other mom's that I am concerned about.

Endocrine will be on May 4th. This will be our 6 month follow up meeting.

Oncology also informed Kris that every Friday Haven will now have full labs done - not just Cyclosporin levels. They will test the hypothalamic hormones, Cyclosporin levels, sodium levels, and other needs for the lab testing. This is more than Haven usually has but is needed for the records and to see if anything is changing, good or bad.

Haven will continue on this chemo treatment for one year. At 6 months the Oncology team will review all of her results with the medical board.

There is the small quick version of it all.
Thank you to everyone
Love ya