Finding Oncology, Pulmonary, and Endocrine!!!

Tomorrow we will be meeting one of Haven's doctors and having a full review of everything "Haven".  I have copies of all of her latest work and labs for this doctor. 

We will be moving asap towards another Oncologist and setting up for the year of chemo treatments - will be nice to have them on the calendar instead of figuring out when the next one is.  We have at least one or two more surgeries coming up.  If one of the surgeries is soon I will push to have it after school is out in June.  She is doing amazing at this school and to her it would be a punishment if she had to be out for a week or two. 

I have been in contact with people about a Pulmonary doctor and getting her next sleep study. I tell you I can definitely give you the results at home!!!  I just bought a mega ton humidifier for her room - it helps a bit but I need a Pulmonary doctor to check her CPAP machine and get her working on it.

Endocrine will be the more difficult doctor - they do not have one for children in St. George.  So we will have to travel to Salt Lake City for this for each appointment. 

The probability of having to go to SLC for Oncology, Pulmonary, and Endocrine is pretty high and the hospital we would be going to is: Primary Childrens Hospital.  Which is the children's hospital for Utah, Idaho, Wyoming, Nevada, and Montana.

We have a few other ROHHAD patients attending this hospital and one is undergoing part of Haven's treatments for ROHHAD. 

I will be happy to get with an Oncologist regarding her IVIG and hope Haven can fully recover in the next year or so. 

I will know more tomorrow and hopefully be able to give a clear update on Haven...right now we've just been doing little bits.  I will get with the other parents using SLC and find out who their doctors are.  Maybe even plan a visit with these other children!!!

Until I know more........................

A day at the ER

We had a bit of a scare yesterday when I received a phone call from Haven's dad that she had complained of chest pains two different times at school. She didn't want to come home but instead wanted me to bring her some medicine to make it stop. I don't have medicine for chest pains......

What is more important about the chest pains is that Haven doesn't feel pain - so when she does we know it's serious. I called her Pediatrician who told us that she wanted Haven in the ER asap to have an EKG. She didn't have the equipment at her practice.

PS: I will never go to an ER for Haven without an appointment first. It is so easy to sit there for the 7 - 8 hours if you aren't wasting 3 - 4 hours in the waiting room!

Haven's pediatrician called the ER and I sent an email to her Oncology doctor. He also called the ER to let them know we were coming. We got there and her room was ready and all the doctors were up to speed on the Neuroblastoma and ROHHAD.

This is Haven with a nurse she used to have at her Peds office. They hadn't seen each other since 2009 when her nurse was transferred to the Children's ER at Hopkins. It was so awesome to see her!

Haven had the EKG as soon as we got in to the room. Then they hooked her up to the heart and respiratory monitors. I requested a pulse ox to watch her.

Then it was off to chest x-ray.

She has a beautiful heart and the lungs look great. I am very sure her inhalers are working. The doctor at the ER let me see the x-rays from January 3rd and compare. These look much better.

Next it was time for labs. Haven always monitors the nurses when they are getting the port supplies out. She makes sure they have the correct needle and vials before putting it in to her chest. Unfortunately, no one accesses her port as good as her nurse Katie. But she did well.

Time for the flushing. Haven flushed it and put the Heparin in all by herself. She likes to do it because if the nurse puts it in too fast she can taste it and according to her it's disgusting!

Her sodium levels and cardiac enzymes came back great.

In the end everything tested out fine. Obviously with ROHHAD and her chemo it's not good to tempt fate with the heart and a cardiac arrest is very possible in our children. The fact that Haven felt the pain is more important - since she just doesn't feel it like a normal person.

She will be seen back in Cardiology next week for another EKG and the heart halter again. She will also be back in chemo next week and have a thorough exam with her Oncologist.

To end out the long day and evening Haven came home to wiggling her tooth. Within 30 minutes of wiggling and pulling the tooth was out and she was ready for bed! Tooth fairy was put to work!

Somethings are perfect when you don't feel any pain!

6 Week Oncology Visit

Miss Haven had her 6 week visit to Oncology today. She did as awesome as she always has.

So far Miss Haven is holding steady. It's been 15 months since our last huge chemo treatment and 11 months since we were in isolation and my baby girl is doing AMAZING! Everything that reversed after the chemo is still holding steady....we've seen nothing revert back. She isn't even wandering the house in her sleep anymore...she still screams and yells but hasn't walked the house in 4 months.

She also didn't need her IVIG boost today --- so they will recheck her on November 13th!

Next up Endocrine appointment!

Missing my baby!!!

Well.....I'm missing my baby.

I called the camp twice yesterday and talked to the director both times.

Miss Haven is having a blast!! Probably not missing us much...well maybe she's missing Deezy. But they said she slept well - only a little talking and yelling - had a great time at breakfast. She also has a friend from clinic in her cabin. So they were playing together and signed up for crafts.

I'm very happy she is having such a great time and that this camp even exists! Thanks to Hopkins for making this type of camp possible for kids with cancer. We are more comfortable with letting her go to this camp because it is run by her doctors and nurses and child life specialists. The nurses are there every day and the child life specialists that have helped us through everything. Doctors go out to check on the kids and visit. Most of the kids have to bring extra luggage just for their medications and many get their chemo treatments while at the camp. We are happy Haven is not on chemo anymore and can just enjoy hanging out with all the kids!

We are looking forward to seeing her bus pull up on Saturday and giving her a big hug that we're sure will embarrass her in front of her friends! :)

I have not been able to actually talk to Haven yet but we are 2 nights down.....with 4 more nights to go!


Mom landed in Korea safe and sound - her friend Minnie went with her. So I'm sure they are having a great time too....can't believe they left at the same time!

Oncology appt

Miss Haven has been doing so well lately and absolutely loving school. It almost feels like what a normal life should. I never would've thought a year ago we'd be on no medication and in school. She is still on her 2 hour a day schedule and will finish the year with that. Her graduation is coming up so we're excited about that. Gma and Gpa B-Honey are going to come and watch her get her awards.

She has a big day at Oncology tomorrow. She is expecting to only do labs - which is an easy day for her. She actually hooks the vials up to her tube in her chest and switches them out. The nurse just watches over her.

We're really expecting to see her weight drop. I am very hopeful. She has been walking to and from school every day since starting. She is playing at recess now and really loves her computer class. If she is good all week she gets to go to the school bookstore and buy a new book. I even got a demanding phone call that I HAD to take a day off of work to read 10 books with Haven. I'm not a reading fan....so taking a day off work to read 10 books is worse than working over time! :) That's Dad's job!



It has been so extremely hot lately that we had to shave Deezy down She just overheats so fast. But Miss Deezy is doing great too. Haven is trying to teach her how to speak English. It's not going very well. I get a daily phone call from Haven with Deezy's progress.

Deezy has been doing a great job of guarding the house. She has saved us from the raccoon twice now. However, she does get upset with Haven and even tried to attack her during a sleep walking episode. She gets very upset about Haven yelling and screaming from her bedroom.

The picture above is her favorite spot. We have to leave the chair there so Deezy can look out the window and let us know when people are too close to the house.


Haven has pretty much taken over my facebook account. she loves all the games on there and is currently building her islands in Treasure Isle. So if you're getting fruit requests...blame Haven! :) She is a computer hog! :)

Will update everyone with Haven's numbers as soon as I have them.

Vet, Pulmonary, Therapist, Oncology, Endocrine and Child Life

Well I definitely made great use of my day off work yesterday. Only one of the above in the title did not belong to Haven! :) Deezy had to be spayed yesterday. She is recovering well and Haven has been hand feeding her...SPOILED!

After taking Deezy to the vet at 7:30am we headed to the hospital. We started our day with Pulmonary and reviewing Haven's latest sleep study and setting up our follow-up appts.

PULMONARY: sleep study - my main concern is Haven's CO2 levels

• February 2009 - CO2 level at 49 - was told that jumping to 50 would take a lot and they didn't expect it.
• July - September 2009 - Hi CY treatments and Isolation
  
• August 2009 - CO2 level at 50 - doctor said he will start being concerned at 55 and she will be watched closely.
• October 2009 - HD Dex and IVIG
  
• March 2010 - CO2 level DROPS to 45 - doctor extremely happy and not expected. 35 - 45 is normal!

Pulmonary agrees and is doing more research on sleep instability linked to respiratory syndromes. Possible theory is that her sleep walking kicks in when she has a good length of pausing in her breathing. This could be keeping her levels at a normal level and may be why we are seeing an increase in sleep walking coinciding with a lower CO2. Who knows....but it's a good theory. I honestly don't mind sleep walking because I know she's breathing - I can hear her yelling!

THERAPIST: Honestly this may be good for some but I'm just not sure it fits in with us right now. Haven has no anxiety about doctors, needles, procedures. She's been doing this since age 2. Maybe it would've been better in the beginning but I'm not sure where it will help her now. The only issue Haven has is leaving the house but once she's out she's fine. I don't think trying to treat her like a "normal kid" at this point will be beneficial....the girl is already too adultlike.

ONCOLOGY: Received a call from them regarding Haven's MRI.

• Brain: clear and perfect --- as with all of her Brain MRIs - no tumors and anything out of place
• Abdomen: tumor still present but has not changed shape or size. Very stable and will be monitored as usual.
• Pelvis: perfect nothing out of the ordinary and nothing new showing up

IVIG is coming up and another round of immune testing. We are currently working on getting Haven in to school. There are a lot of factors here.

ENDOCRINE: This was our 6 month follow-up visit and through emails we had discussed other tests I wanted to run.

• May 2009 - Haven had no growth. She hadn't grown in 1 1/2 years. She was a negative on the growth scale and was about 38 inches tall.
• July - Sept 2009 - HI CY treatments
• September 2009 - Haven shows growth potential - grew to 39 1/2 inches tall - no growth hormone shots and testing again in December
• October 2009 - HD Dex and IVIG
• December 2009 - Growth hormone tested - show an increase
• March 2010 - Haven has GROWN now to a solid 43 inches tall!!!!

I had discussed doing Cushing's testing again - after talking with the doctor - Haven has shown tremendous growth and this isn't usually the case in a Cushing's child. She also didn't have the red striae noted on Cushing's patients. Doctor again said IF I really want to do the testing he will order the salivary cortisol testing and if I really wanted he would do the other tests but it requires a lot from Haven and there really isn't any evidence leaning towards Cushings. So I have decided not to test and will review again in 6 months.

Prolactin - seeing the brain MRI showing no tumor present at the Pituitary tells him it just confirms the mis-communication between hypothalamus and pituitary. He will be concerned on this hormone around age 9. Until then they will keep monitoring.

Leptin/Adiponectin - As we can guess - Haven will have a high Leptin level - she's obese. But even is she is Adiponectin deficient there is nothing that can be done at this time. To run the testing would just be for the books and nothing done with it. So we will let this go for a while.

Brain Stem - I wanted to discuss this but Endo doesn't work with the brain stem and was unable to answer my questions. He is consulting with a Neurologist for me and possibly will set up a meeting with Neuro at some point. But as he said - if there is nothing Neuro can do about it and can't fix it then it's probably not beneficial to have them on the appt list when they can just review her results in the system.

CARDIOLOGY: Happy to report!!!!

• Before all of our treatments Haven had been on BP medication for 2 years --- she was taken off in September 2009 --- BP has stayed around 109/65 and no medication!!!!!!!
• Before all of our treatments Haven's resting heart rate range was 140 - 165 ---- she is now consistently staying between 80 - 90!

CHILD LIFE: We're working on getting Haven in to school a few hours a day and with her currently home school teacher joining her. This will help her slowly get in to the rhythm of school and not overwhelm her. There is a lot going on here first before we finalize everything.


As you can see I am very happy! I'm very proud of Haven for kicking butt the last 4 years and I'm very thankful to our doctors for fighting to do these treatments for her and now we're actually seeing some results! I'm looking forward to our 1 year mark and hopefully a full immune system! :)

Love to all -----

Doctors....not all bad

About 75% of Haven's life has been in doctors offices and hospitals. Over the years we've been through a lot of doctors - some bad, some good, and some that are truly lifesavers. I get upset with doctors and when we first came to MD I was every doctors enemy. I didn't trust any of them even if I had just met them.

CA was horrible. We spent 2 years wasted on doctors and hospitals. Constant blaming of us for our daughter's issues and constant dismissal of symptoms. This made me hold a grudge against ALL doctors.

Moving to MD was probably the best decision I made to save my baby. We've lived at Hopkins for over 2 years now and we've made it through some rough patches with doctors and diagnosis. I've had many arguments and disagreements with our doctors in the beginning and it was hard to take what they were telling me.

But now I can't tell you how much I respect our doctors and how much gratitude I have for them. I can honestly say without these doctors I probably wouldn't have my baby with me. I probably would've lost her and never knew why.

There are major players in Haven's life who have kept her alive and fighting and have helped me along the way.

Dr. Cooke - Endo - he has been there from day 1 when Haven was rushed to Hopkins from Upper Chesapeake. He didn't give up and tested her for everything. He listened to what we had dealt with prior in CA and he broke it all down. He found her Ganglioneuroblastoma Tumor and ultimately diagnosed her ROHHAD by putting all the pieces together.

Dr. Paz-Priel - Oncology - he's been with us since December 2007 when we were first informed that Haven had cancer and a large tumor in her abdomen. He has been the best doctor I could ever hope for. He is always there when I need someone to listen to some wacked out theory I have or to listen to all the notes I take on Haven. He watches the videos I send him. If it weren't for his aggressive attack on her cancer and ROHHAD I wouldn't be here showing the world my baby and her improvements. He has never given up on Haven and has fought through many doubts on her treatments. Seriously I could never thank him enough.

Dr. Price - Surgeon - well....without him and his knowledge of these tumors and surgical skills I could've lost my baby in February 2008 when she underwent a 14 hour surgery. He has been there when I need him and for anything I have questions about. He is the only surgeon I would ever let dig deep in to my baby. He watches for Haven and when we see him at the hospital he always stops to say hi to her. Amazing!

Dr. Cooper - Pediatrician - she has been there for more than just Haven. She has been there to help us out as parents. She has collected articles written by other doctors for me that I can't get because I'm not a medical professional. She has helped us get Haven the appointments that are difficult with specialists. She's even helped me get in to doctors!

There are people that will never see Haven again that I'm thankful for their honesty - Upper Chesapeake. They stabilized Haven during her seizure and did a CT scan...ultimately came out and were honest and said "We can't help you - we're calling Hopkins". I am so happy they didn't just try to guess and openly admitted they didn't know.

It took me a long time to trust in a doctor with my baby and now I can't imagine not having them in her life and watching over her. I am very happy they put up with my cockamamie theories and my many emails.....most at that level wouldn't even pay attention. And believe me, I email them a lot!

Sleep study and MRI

We are ready!

Spoke with Pat at Mt. Washington Sleep Lab and we're all set to go. They have Haven's room ready so we'll be there by 8pm Saturday evening. Pat said she'd missed us because it's been 6 months - I had to reschedule this appt a few times.

Confirmed with MRI today for Haven's appointment on Monday. We have to be there at 7am. They have promised that it IS in her files to use her PORT ONLY for the IV. I better not see a bunch of needle holes and cables wrapped around a leg or arm when she comes out. I already know they will intubate her during the procedure. This is going to be a 4 1/2 hour MRI which is too long for her to be under anesthesia without assistance. So I have promised them that I will not argue about it as long as they don't threaten to automatically keep her overnight!

And they have Haven listed as a "Frequent Flyer" in her records at MRI. So I'm wondering if after so many hours does she get a free MRI????

We also have an Endocrine appointment this month on March 22nd. I'm excited to get in there to talk with him. Oncology never talks to us about Haven's growth hormone or prolactin or anything like that because it's not their deal - it's Endo. Plus I want to discuss my many random theories. Plus my MRI request was for the head and particularly the pituitary area so he'll be able to discuss that with us.

After that it's another trip to Pulmonary and our normal Oncology visit! I have to set Pulmonary up after the sleep study.

Endocrine

We met with Endocrine on Monday. I was concerned about this meeting - this would've been one to cause arguments. But instead we received happy news!!!!

Haven is growing - however slow - but she is growing. She is in the 5th percentile right now and showing signs of continued growth. The doctor was pretty happy with that. I was concerned we would have to start giving her growth hormone shots as this is what was said in May prior to Hi CY. But since then she has grown almost an inch!

He also stated with her growing and growth hormone levels at least not below normal she did not have to do the cortisol testing right now. He would put a request in to Oncology to have both growth hormones checked in December during labs.

So we are very happy and excited we do not have to give her a shot 6 days a week! :)

Hi CY - Day 1

Well yesterday was very stressful so we were hoping for a less stressful day today.

Yesterday afternoon we received the news that Haven did not have Hepatitis B and was clear to start chemo. So the order was placed. By the time the pharmacy made it and cooked it she started around 10pm last night. Within the first 30 minutes she had a pretty strong headache.

They have kept her loaded up on Zofran today to help with the nausea and we have started her back on Colace as well.

She is on a constant drip of fluids which requires her pee to be tested every two hours.

Haven also had her EKG today which came back great and the doctors were all very happy with it.

We were also shown how we will clean her port. However, while she is in here the nurses will clean it. I think the removal of the tape will be the worst part of all of it.

This is the line of the new port. You can see the scar on the upper left which is where her other port is located. Her Central Line looks great. As usual, Dr. Price did an awesome job. The line gets pretty heavy with 3 lumens hanging from it with medication dripping in so we have rigged it up with a safety pin that is held on to her hospital gown.

We're very excited also because Nurse Clair has signed on as Haven's primary nurse. She will be Haven's main nurse throughout this entire treatment and Nurse Patel and Nurse Stephanie will be her night nurses. Haven really likes Nurse Clair.

I have not met Nurse Stephanie but I really like Nurse Patel as well. We had a few funny little incidents last night with Nurse Patel. When Haven went to sleep at 9pm Nurse Clair was still here and then around 9:30 Nurse Patel came in to do Haven's vitals. Well she freaked out and wouldn't let the nurse touch her because she didn't know who she was. She wanted Nurse Clair. It was funny. Kris and I had to go through the changing of the nurses with Haven 3 times before she let her do her blood pressure.

Then Kris told me around 4am they had to do a diaper change but Haven was sleep walking at the same time. There was quite a bit of fighting and the nurse told Clair all about it this morning. She said it was a huge sigh of relief when the diaper change was over!

Haven is doing as well as can be expected. The doctors are all very proud of her and how well she handles taking all her medications and working with the nurses. We met with 3 Oncologists today and all were happy with her numbers.

She will receive the 2nd round of Hi CY tonight around 1opm.

Next surgery

EDIT: SURGERY SCHEDULED FOR 9:00AM

From our meeting with Oncology last week we have moved forward with Haven's foot surgery. I called the Podiatrist yesterday and discussed Haven's needs and the urgency of this surgery. They contacted Haven's doctors and we are set for surgery on Monday June 8th. We're actually on stand-by right now - I'm waiting for them to call back with a time. All of the pediatric beds were full so they were going to move people around.

Haven's toes were so infected this weekend that a couple of hours at the mall caused them to crack open and bleed for the past 3 days.

Haven will be in Oncology this Friday to receive IVIG. This takes a full day to administer. Her dad will be with her and I'm sure all will be quiet because I won't be there bugging anyone! :)


I will update her site with the next plan of treatment soon. We're still trying to let it sink in a bit.



We are hoping they are able to get our last anesthesiologist, Dr. Rich Elliott, that did her eye surgery. He was really good and he's the one that called and talked to me prior to the surgery and then he followed up with Oncology. He was very good.

Love to all
M

Endocrine Meeting

Well we had a very good meeting with Endocrine today. It was the best meeting we've had with Endocrine. We had quite a few areas of discussion today. Our next appointment will be in 4 months instead of 6 months.

Beginning with Haven's blood pressure being slightly on the rise and today at the doctor her blood pressure was 125/67 and a heart rate of 125. Which the heart rate I'm used to but I noticed last night her blood pressure was 124/63. Which is pretty high. We discussed with Endo and it's possible that her blood pressure medication may need to be reevaluated and increased. We will discuss with Oncology on our next visit. Cyclosporin can also raise the blood pressure.

Next up was Haven's growth. While I have been happy that between January and April she has grown from 39 1/2 inches to 41 1/2 inches it seems as though this is not enough. Haven is around the 5th percentile for height. We had a pretty long discussion as I really do not want to have to put her on growth hormone shots. Our friend Josh is on them and I believe he gets 6 shots a week....I think Haven would beat me up if I tried to do that! :) The doctor said he would not put her on this yet but he said he had to see her grow a lot more in the next 4 months than she has in the last 6 months. If she does not grow a lot over the next 4 months she will have her IGF1 retested and probably begin the shots. Haven's current IGF1 level is 55 and normal is between 57 - 260.

Haven has her Thyroid checked about every few months and as of right now she is looking good. Actually I had to have some blood work done last week and her Thyroid is better than mine! So this is great news. Kris has been concerned with Haven's sodium levels - which over the past 3 months of lab work she has remained in the healthy zone - not high like she was before we started back on chemo.

NORMAL PROLACTIN: LEVEL 0 - 18

The above chart is something I made with the info received today about Haven's Prolactin level. In the early months of 2008 we didn't really monitor this very close. In October I began a lot of research and was extremely concerned about the Prolactin level. The doctors weren't really monitoring it because nothing has ever really been noted about Prolactin in ROHHAD children. I was very emotional about checking this constantly that the doctors have now started to look closely at it. The graph above shows the dates Haven's Prolactin was checked and the level it was at. This shows us that the Hypothalamus is not communicating with the Pituitary.

We discussed the time in the graph where Haven was at her lowest on Prolactin level. This was the best Haven has ever been in 3 years. She completely stopped wearing diapers, she was refusing food and never asked for it, she was sleeping soundly, never sleep walking or talking, behavior was awesome. This was when Haven was on Rituximab and Cytoxan. So as I have been questioning over the past few weeks in my head with the minimal progress we've made on Rituximab. Was it the Rituximab? Was it the Cytoxan? Was it the combination of both at the same time? I believe this is a hint to what we will find out in 4 more months from Oncology. I won't make a guess here but I have a pretty good feeling I'm right.

Cortisol - Cushing's testing -- We discussed retesting Haven for Cushing's Syndrome with the salivary test. Her last Cortisol reading was done in January when she was taken of Prednisone and it was at a good level. The doctor pretty much left this decision up to me and what I wanted to do. I talked to Kris and then told the doctor that I felt I would like to wait until our meeting in 4 months to do the test. High cortisol will stop you from growing. Since Haven has grown this may be more that she doesn't need to deal with right now. He agreed. So in 4 months if Haven has not grown almost twice as much as she has in the past few months we will test the Cortisol.

At most our Endo doctor will only do the salivary testing for Cushing's. If we find that her levels are not normal he will refer us to a doctor at NIH for further testing. He is not familiar with all the types of Cushing's and the doctors down there specialize in this. Knowing Susannah also went to NIH makes me feel more comfortable with going there to be tested. The reason we can not do the pee test on Haven is because she is still in full-time diapers. She would have to be admitted to the hospital for a week on a catheter to get all of her urine. I do not want her to have to do this if it's not necessary. So in September we will move forward with this.


I feel really great about our meeting and the decisions we've come to together. Kris said he felt very comfortable with it all. We continue with our current list of medications, checking her blood pressure twice a day, and monitoring her on the pulse ox machine at night.

Thank you to everyone for all your help.

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

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
M

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.

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

Home from the Hospital!!!

We arrived at the hospital around 8:30 am on Thursday to get ready for Haven's surgery. She was all happy. We hadn't really told her too much about it yet. She gets very anxious now so we waited until we got upstairs to explain it all to her.

When we got upstairs we met with the anesthesiologist, Dr. Elliott, and her eye doctor, Dr. Guyton. I really want to say how happy we were and are with both of these doctors. You are handing your child over to someone you don't know and have to really feel comfortable. Both of them made us and Haven happy. Dr. Elliott is one of the best anesthesiologist we've ever had at JH. I told Kris I wish we could request anesthesiologists each time, because I'd request him.

Haven got the "G"s on the side of each eye. This notes which eyes will be done and Haven needed both.

Heading off to surgery. Bluesy went with Haven. She said all her other babies were too scared to go to the eye doctor. Bluesy also had her eyes done, Haven said. Dad took her back - as I said before I only went one time and won't do it again. She did very well. She put her own mask on to fall asleep. The flavor of the mask this time - Popcorn. I was informed by Haven that popcorn flavor is very nasty!

She did extremely well through surgery. When she came out after round 1 we were able to visit with her. I only went back to see her for a short time - Dad stayed with her most of the time. I helped with holding her down to get eye drops in. Then they put her back under for round 2.

All in all - we arrived at 10:30 and were released from recovery room at the eye center around 4pm.

Haven was taken to the 4th floor of the pediatric building. She had a private room to recover in. About 2 hours after surgery they said she could have something to eat and she was so excited because I was going to get to feed her like a baby. We had lots of fun playing "Guess what food this is?". She was very happy to get carrots because as she says "they are good for the eyes".

Haven finally gets some sleep. She had a couple doses of Oxycodone and this really helped with the eyes. They were burning quite a bit. She kept asking for a mirror but we told her that hospitals don't have mirrors on the kids floor. We knew if she saw her eyes that she would freak out.

Dr. Paz-Priel came to visit us on the 4th floor on Thursday to see how she was doing. We were very happy he came by. Then her nurse from Oncology, Katie, called to check in on her. She was very happy but couldn't understand why Katie couldn't be her nurse over here.

As soon as Haven was conscious enough she wanted to make some phone calls. As soon as she got out of surgery she was begging to call Lauren. She had to call Lauren because she told Lauren she would. We called Lauren twice and left a message. Then when Lauren called back she got in trouble for not answering her phone and was told that she couldn't put her phone back in her purse incase Haven needed to call. It was very sweet. Sorry family - Lauren came first! :) But Lauren is her bestest friend she says.


Haven's port. She likes to check out her port every day to make sure it is looking ok. She also likes to look at it a million times when it's accessed. She said I had to show everyone how it looks and that it doesn't hurt when it's paper tape.

Finally awake on Friday. Haven was moved to the 8th floor for Inpatient Pediatric Oncology in the middle of the night. We had hoped to receive the Rituximab in the wee hours but were not able to get it until around 11am on Friday.

This is Miss Haven's right eye. They had to do both eyes. The doctor said the absolute way to check the eye roll is when they are asleep. We thought only one of Haven's eyes were bad but when she is asleep both eyes roll very far out and a lot of correction had to be done on both.

While receiving our chemo on Friday Haven woke up with a bit of energy - not normal for her. She wanted to walk around the floor and check out the play room.

We all played a couple of games and after about 30 minutes she got a bit tired. We headed back for a bit of a nap. Around 3pm we learned that Cyclosporin actually comes in two different types. There is the "N" type and the "S" type. Even though we specifically went over it with the nurses on the 4th floor and we showed them the box of her Cyclosporin we somehow received the wrong type.

We now know Haven gets the "S" type. However, this evening she received the "N" type. Haven's levels are checked twice a week and she should be at 200, anything over 250 puts her at a toxic level and we usually skip a dose. Around 3pm the doctors came in and told us that we received the "N" type and Haven's levels were at 389. We had to run tests on the liver and kidneys and they checked her over for blood pressure and watch for tremors.

Waiting on our tests to come back from the lab Haven fell asleep on the couch for a long time with Dad. Dr. Evelyn was very apologetic and very comforting in our wait for the results. Finally around 8pm the results came back and Haven was clear to leave the hospital. We got all excited and started to pack up when Haven reminded us that she still needed her port out!

Haven's nurse, Kim, came in and this was Haven's most dreaded time. She had been anxious about removing the tape from the port and removing the needle. She wanted to make sure this nurse knew how to do it like Nurse Katie does. She asked if they could make her sleep to remove the tape. But we made it through and Haven helped out.

This is a close up of Haven's eyes on Friday evening. Check out the difference. The doctor did an awesome job and we are very happy with everything.

Haven slept very happy last night. She slept all night and never woke up and I don't believe she even talked in her sleep. She woke up around 8am this morning and went back to sleep around 10am. We told her she could sleep all day and even at 2pm she is still asleep. :)

We are happy to have our baby back home. All of Haven's photos are uploaded in to her FLICKR account. You can click HERE to see all of them.

Haven's Surgery

I was able to talk to a few of Haven's doctors and nurses today.

We need to be at the hospital by 8:30am tomorrow. Haven can not eat past 6:30am.....THIS IS THE HARDEST PART OF ANY PROCEDURE! Haven's surgery will begin around 10:30am. Do you even know how many times we will hear her ask for food during that time!!!!!????

I talked with Oncology and due to her at home chemo needing to be mixed with milk she will not take that until she wakes up but we will take the blood pressure meds - if Haven misses one dose of BP meds her BP rises significantly and we have to keep it down.

Once her surgery is over Haven will be admitted to the 8th floor instead of the normal recovery on the 4th floor. Haven needs to go to the 8th floor because this is the only floor that has Chemo Nurses (ha ha - that's how they're known). When Haven comes out of anesthesia she will begin her chemotherapy Rituximab - which should take about 6 hours to administer.

Summary: Surgery begins at 10:30am and about 6 hours later she will be in recovery receiving chemo for about 6 hours.

Haven will be monitored at the hospital for the night. We will update every as we can. We can't guarantee when we will be able to contact anyone - we will definitely be sleeping all day Friday if we're home.

Love to all.

Chemo Plan

Friday Kris and I met with Haven's Oncologist and discussed the Neuroblastoma Cancer and that they will keep a watch on the tumor and monitor that. We also discussed ROHHAD and Haven's current condition.

We have seen some positive results over the past 2 weeks with the Rituximab. She has been going potty by herself and she has been sleeping....or at least she did for a week. Since Friday's dose of Rituxan she has not slept. I really hope this evening is much better.

We also learned that she will be on her current chemo plan for about the next year. They will reevaluate in 6 months and continue on for another 6 months after that. So we are looking at hopefully going off the chemo this time next year.

Haven's Oncologist also gave me a bit of homework - which I haven't started yet. There are a few questions we need to ask some of the other moms to maybe come up with another theory and may require more testing for Haven.

As for now Haven remains under the care of Oncology (as she will for a long time), Pulmonary, Endocrine, and her Pediatrician.

Medical Updates

Haven has Rituxan tomorrow - her full day of chemo at the hospital - and it has been requested by her Oncologists that I join Kris and Haven at this meeting to review everything. I do not normally go to the chemo appointments but since her doctors are urging me to be there I will join them.

(PS: Hi Oncology Doctors - they told me they read Haven's blog so this will be a test!)


What I know:

Haven will remain on Cyclosporin twice a day for a minimum of 6 months
Haven will remain on Rituxan for a minimum of 6 months

They will not alter this schedule or make any changes. I have been and will continue to keep a daily log of Haven and monitor her for any changes - positive or negative. At the end of her 6 months her doctors will discuss her files with the medical board for further review.

Haven is still on schedule for surgery on March 26th. Haven is at a high risk on this surgery due to the ROHHAD and the chemo. The biggest concern for her doctors is her being in anesthesia. The risk of her stopping breathing is significantly higher due to the ROHHAD. We have already been called about Haven staying over for observation - but I have requested that this only be done on an as needed basis and not automatically.

I also spoke with Haven's nurse today - the ABG (Arterial Blood Gas) will also be performed during surgery. She has to be under anesthesia to have this done so we had to make sure it happened at the same time as the other surgery. Haven's ABG will be done through her wrist. I am told she will have more pain from this than the actual surgery.

On March 27th - Haven will be back at the hospital for her full day of Rituxan.

April 9th - We will meet with Haven's Pulmonary doctor - Dr. McGinley. He will begin to handle Haven's case from this point forward - re: respiratory functions. He will review her ABG results with us and begin to keep a constant monitored file for Haven.

Early May - We will meet with Haven's Endocrine doctor Dr. Cooke - for her 6 month check up. We will look at her growth and talk about her immediate future where he is concerned. He has been working close with Haven's Oncology team and the Orthopedic doctor.