Visiting Blake and Max

Kourtnee and Max came into town today, so we got to see her and Max.  I can't believe how quickly these little ones are growing up!

Hi Blake!

Gramps and Ace

Gran and Ace

Tinsley, Ace, Blake and Max

I love that Tinsley and Blake seem to be conversing here. 

Wonderful Weather

We have been enjoying these "spring-like" days over the past few days.  The weather has been perfect!  

Saying hello to Jack

She was jabbering away telling Ace all about something. :-)

Her story wore Ace out

Tinsley, however, is like the Energizer bunny, she just keeps going and going!!!

She will occasionally slow down to let you pull her in the wagon. :-)

Ace's 4 month well check

Ace had his 4 month well check today.  He did great!  Dr. Boecker was impressed by how strong Ace is and how well he is doing.  He is right on target developmentally. Ace weighs 17 lbs. 2 oz (82nd percentile), he is 26.75 inches long (92nd percentile) and his head circumference is 17.25(82nd percentile).  Ace had his 4 month immunizations with the exception of the rotavirus vaccine which is an active or "live" vaccination.  The benefits do not outweigh the risks for the rotavirus vaccination in Ace's case, so we opted not to give it to him.  

Ace blew a few "bubbles" and talked and cooed while 

waiting to see Dr. Boecker

Definitely less than thrilled after shots, 

but just cried a little bit for a few seconds.

Such a tough and easygoing little boy!

First appointment with Dr. McClain

Ace had a great appointment with Dr. McClain on Friday.  We really liked him.  He thoroughly examined Ace and was incredibly reassuring.  They did blood work, a full skeletal x-ray survey, and a chest x-ray on Friday.  The blood work all came back good.  His liver enzymes are slightly elevated at a 67 and the high range that they normally like to see is a 60.  Dr. McClain said he is not concerned with this # as it is not alarmingly high and we will watch it.  There were no lesions found on his bones in the skeletal survey which is VERY good news.  There was a "shady" area on the chest x-ray, but Dr. McClain said that he is not concerned about this area at this time.  He thinks it was likely an area of blood vessels.  He said that it is hard to get a good, clear read on a baby Ace's age.  Ace will have to have a head CT as well as an ultrasound to check his liver, spleen and kidneys.  They are going to call us the first part of this week to let us know when that will take place.  Ace will have to be sedated for the CT, so it has to be scheduled with an anesthesiologist.  Dr. McClain does feel that Ace will need some form of chemotherapy.  Based upon his examination of Ace and the test results on Friday, he feels that we have a very good shot at the LCH being skin only at this time.  If the CT and ultrasound come back clear, he said that Ace should be able to take a form of chemotherapy that is given orally.  It would be given by us, at home for a period of 6 months to a year.  If they find other areas affected in the CT or ultrasound then he would need to have chemotherapy intravenously and would also receive steroids orally.  We feel extremely positive after our meeting with Dr. McClain and remain hopeful that the skin is the only organ that the LCH is affecting.

Dr. McClain was very informative.  We had a long list of questions and concerns and he answered all of them without hesitation.  One of the major questions that we had was regarding when this disease can become fatal.  Dr. McClain has been working at TX Children's Cancer Center treating LCH patients for 27 years.  He said that in that time period, he has lost 4 patients to this disease.  These cases were all many years ago.  He explained that there are currently 4 different chemotherapy/treatment regimes that they use and that all patients have responded to one of these regimes in recent years.  This was so comforting.  We had also read that patients who were diagnosed with LCH before the age of 1 were more likely to have a serious form/multi-system form of the disease.  Dr. McClain stated that recent studies had confirmed that this is not the case.  Dr. McClain explained that if the LCH is presenting as skin only at this time in Ace, the chemotherapy drug would hopefully "head off" the disease from showing up elsewhere.  He explained that in cases where it presents as skin only, it shows up elsewhere in the body 40% of the time within the first year.  By treating with chemotherapy, we are hoping to stop this.

We could not be more thankful for the results of the tests on Friday.  We feel so comfortable with Dr. McClain.  He spent a great amount of time with us, and encouraged us when we left to contact him should we have any questions or concerns at any time.  We have read so many positive things about Dr. McClain from people who are patients and those who are not patients that have contacted him for information.  Treating LCH is obviously his passion and you can tell that he truly cares about his patients.  Friday was a very emotional and hard day for all of us to say the least.  Ace was the youngest patient in the center at the time we were there.  We were on the 14th floor for our appointment and lab work.  We went down to the radiology department on the 8th floor for his x-rays.  When we got back on the elevator to go back up to the 14th floor after the x-ray there was a doctor on the elevator that asked us which floor we were going to so he could push the floor button.  When Toby replied "14", he just shook his head and said "Oh man, not for that little guy.  I am so sorry."  Obviously, floor 14 is not where you want to go.  But, with that being said, we are so thankful that Dr. McClain and this hospital are so close to us. We know that Ace is going to receive great care and we feel really hopeful that we will be able to be through all of this before Ace is old enough to remember any of it.  Dr. McClain was actually waiting for us when we got off the elevator after the x-rays and went over all of the results with us from the tests.  I know I stated in my last post how truly thankful we are for the care that Ace has received, but I just have to say again how great everyone has been.  Dr. McClain was incredibly attentive to Ace and to us.  Dr. Anderson, the dermatologist that diagnosed Ace called us yesterday afternoon(on a Saturday) to check on Ace and to see how the appointment went.  Dr. Boecker and her staff are always great with Ace and Tinsley.  We truly feel that our kids could not be in better hands.

We really want to thank everyone again for keeping Ace in their prayers.  We know how fortunate we are to have so many people who love our little boy.

Up and ready to go Friday morning.  Thursday night was Ace's first night in a hotel.  We did not have a very restful night.  Ace did not go to sleep until around 11.  He woke up at 1:15 and went back to sleep around 2:45.  At 3:39, the clock alarm went off.  We think the cleaning lady may have accidentally hit it and turned it on as neither of us had messed with it.  The alarm woke Ace up and he was not happy.  He went back to sleep after a few minutes, but was back up by 6.  I think he was anxious for his appointment.  :-)

Worn out after blood work.  It took 3 nurses to draw blood.  They had trouble finding a vein.  The first vein clotted really quickly, so they had to poke him again.  He was not happy.  He gave those nurses heck!  He is so strong.  We are so thankful that he feels so good.

X-rays

Worn out after all of the tests.  

Thanks again for checking in on us and keeping Ace in your prayers!

Please pray for our sweet Ace!

Ace has been diagnosed with Langerhans Cell Histiocystosis (LCH).  What is LCH?  "In Langerhans cell histiocytosis, certain white blood cells, called Langerhans cells, grow out of control.  In a healthy person, these cells help defend against infection. But in histiocytosis, the cells multiply so quickly that they build up and can damage the body instead of protect it.  Except for their rapid growth, the cells are normal. This disease is not cancer. But it is similar. Doctors who treat cancer and blood diseases also treat histiocytosis.  Some people with the disease have excess cells and damage in only one site or organ in their bodies. Others have excess cells in many places throughout their bodies. The bones are the most common sites of damage - mainly the bones in the skull but also in other places, such as the spine, arms and legs. This disease can affect many body systems.  About 80% to 90% of children recover from this disease with treatment. Sometimes it goes away slowly on its own. It can be serious, even fatal in severe cases. It can also come back later in life."    (http://www.seattlechildrens.org/medical-conditions/heart-blood-conditions/langerhans-cell-histiocytosis/)

At this time, the only organ that we know that the LCH is affecting is Ace's skin.  He had a rash that started on his neck around December 30th.  It got progressively worse and spread up into his head and back.  We took him to the pediatrician on January 8th.  Ace saw Crystal, the PA at our pediatrician's office as well as Dr. Boecker.  Crystal and Dr. Boecker were both concerned with Ace's rash as well as a few purplish/red "blood spots" that Ace had in his groin area.  They prescribed a steroid cream and said if the rash got any worse or did not get any better to bring him back in.  The next morning, we woke up and gave Ace his bath.  The rash had definitely spread and seemed to be much more red.  I texted pictures to Crystal for her and Dr. Boecker to review and they asked me to bring him back in.  Dr. Boecker switched him to a different steroid cream and referred us to a dermatologist, Dr. John Anderson.  She also ordered blood work due to the blood spots.

We went to the dermatologist on January 16th and saw Dr. Anderson.  He examined Ace and decided to do a biopsy on one of the lesions.  He also had his dad, who is also a dermatologist examine Ace.  I thought at the time that the rash was related to something Ace was allergic to.  Dr. Boecker had already run bloodwork to test for blood disorders such as leukemia due to the blood spots in Ace's groin area, so I thought we were in the clear.  Dr. Anderson then explained that the rash looked like LCH.  He told me not to go home and google it as it would just scare me.  I made it to the waiting room where I fed Ace and googled it on my phone.  He was correct, I was scared.  Dr. Anderson assured me that he would get the biopsy results as soon as possible and that we would work together to make a "game plan" for Ace if it did turn out to be LCH.  On Monday, the 21st, Dr. Anderson called and told us that Ace's biopsy came back as positive for LCH.  I have to say, Dr. Anderson was really good with delivering really bad news.  He assured me that though this is not a curable disease, it is treatable.  He had already called and talked to Dr. Boecker and they are referring him to TX Children's Cancer Hospital to see Dr. McClain.  You can read about Dr. McClain here. http://txch.org/cancer-center/histiocytosis-program/   He is the main doctor at the largest histiocytosis clinic in the world.  We are extremely saddened by the diagnosis, but so thankful to Crystal, Dr. Boecker and Dr. Anderson for their care.  From what we have read about other cases, Ace was diagnosed very early and we feel that this will definitely help in treating his symptoms.

We feel extremely positive.  At this point, all we know is that the LCH is affecting his skin.  We meet with Dr. McClain in the morning and will find out what tests Ace will need to determine if the LCH is affecting his skin only or if he has multi-system.  Ace seems to be feeling good.  He has had a pesky ear infection and is on his second round of antibiotics for that as the first round was not able to get rid of it.  He was running a low grade fever until 2 days ago, but that is now gone and he seems to be feeling good.  We saw Dr. Anderson again yesterday.  He removed the stitch from the biopsy and Ace did not even cry.  Dr. Anderson is very happy with the way the rash looks.  We are hopeful that the ear infection was just a normal infection and is not related to the LCH.  Ace was all smiles and "talking" to his grandparents and his big sister today before we left for Houston.

Please pray for Ace and our entire family.  We feel so positive.  Ace is a tough little guy, but it is of course terribly hard on all of us to know that this is something Ace will have to go through.  Toby and I could not be more thankful for the love and support that we have received over the past few weeks from our family and friends.  Our parents, grandparents, sisters, their husbands, aunts, uncles, cousins, and friends have all rallied around us over the past few weeks.  Toby and I were discussing how difficult this must be for our parents.  We know that they love Ace and are worried about him, but we also know how much they love us and wish that we were not having to see our little boy go through this.  Please also keep Tinsley in your prayers.  Our top priorities are to make sure that Ace receives the best care possible and that we are able to treat this before he will ever remember it.  Our other top priority is to make sure that this has as little effect as possible on Tinsley.  She has so many people who love her and are caring for her.  She has done great, but did not like Ace's band aid over his stitch where the biopsy was done.  She is such a caring big sister!

I will update on Ace and the rest of our "goings on" as soon as I can.  I am really behind on my blogging as you can see, but will definitely get caught up.  Thanks for checking in on us and for keeping our Ace in your prayers

.

Santa 2012

Tinsley and Ace saw Santa last week.  They did great.  Debbie and Laura are so patient with the kids and always give them time to warm up.  We even got a few smiles from Tinsley.

We saw Santa twice last year.  Tinsley has really grown since then.  Time is moving so quickly.

2011 Santa pics- part1

2011 Santa pics- part 2

The flu is NO fun

Tinsley has the flu.  We all got the flu shot early this fall and thought we would not have to deal with the flu.  But, it turns out the flu shot only covers certain strains of the flu and Tinsley came down with Flu type B which the flu shot doesn't protect against.  She was literally fine Monday morning.  She was happy and feeling good and went to play with her friend Journi.  Around 4, Linda called me and said that Tinsley had not slept all afternoon.  She said that she laid down to take her nap but never went to sleep.  A little while later, Linda said that she noticed she felt warm so checked her temperature.  She had a temp of 100 and started throwing up right after Linda checked her.  I went to pick her up and gave her Tylenol before we left Linda's.  We got home and Tinsley was sitting in the rocking chair with Mom and did not seem to be feeling well at all.  I checked her temperature again right at 5 and it had gone up to 102.  I was about to go ahead and get some Advil to give her.  Tinsley got out of the chair and stood up and started throwing up again.  She then started having a seizure.  Her eyes rolled back in her head and she continued to vomit.  I can honestly say I have never been so scared in my life.  We laid her on her side and she continued to seize for about 30 seconds. After she stopped, I asked mom to call for Toby because we thought he was outside in the yard.  It turned out he was down at our cattle pens so I had mom call him on her phone and I called and talked to the PA at our pediatrician's office. After discussing with the PA, we felt pretty sure it was a febrile seizure due to high fever, but she started vomiting again right away and was very pale.  She was also not really making much sense when she talked.   Toby and I took her to North Central Baptist.  She continued to vomit off and on all the way to San Antonio.  We did not put her in her carseat because she was so upset and was still vomiting.  She kept calling for me all the way to La Vernia.  This was pretty upsetting because I was holding her.  Her fever got up to 103 on the way to the hospital.  Once we got to the hospital, they took us back almost immediately.  They hooked up an iv and started giving her fluids and zofran.  They were finally able to get her fever down to around 100 with a Tylenol suppository. They did a chest x-ray, urinalysis and lab work.  We were shocked when they said she had the flu.  They think the seizure was a febrile seizure.  These seizures are basically considered harmless and are brought on by spike in fevers.  They said it is not necessarily how high her temp gets, but how quickly it rises which is dangerous and can bring on the seizures.  We followed up with an appointment with Dr. Boecker today.  Tinsley continued to run a fever for the past few days.  We alternated Tylenol and Advil to keep it under control and to try to keep her comfortable.  The entire family is taking Tamiflu so that hopefully we won't get it and in order to hopefully shorten Tinsley's bought with it.

Happy and feeling good Monday morning.  

Ready to go play with Journi.

At the hospital, not thrilled with the IV

Tinsley kept telling us the hear rate/pulse monitor was "hot" 

and blowing on it.

Tinsley LOVES a video that Toby has on his phone of Blaine and Brett working cattle.  She was trying to be so brave and not cry when they put in her IV.  Toby was playing the video for her.  She sure does love those Harvey boys!

2 days later, still not feeling too great. :-(

Ace has been hanging out at Mom Mom and DD's 

in an effort to avoid the flu.

Tinsley visiting Ace

Tinsley cannot get enough of her little brother.  She came to visit him today and is anxious for him to come home.  Until then, however, she is taking full advantage of the play ground at the hospital.

It turns out that Ace is already a great shopper!  When Tinsley arrived today she received a bag full of "big sister" goodies.  

Tinsley looks so grown up!