Here is the picture slice of his brain. I don't know if you can see it but the dr is pointing to the jumble of arteries that is probably making him deaf on his right side. Next time I will get one if the arteries in his brain. It looks very interesting.

Maxwell update

So we had a narley week after my last post. EVERYONE in the house got a super bad stomach flu It was so bad!! Maxwell made a few trips to the hospital cause he was doing so terrible. Thankfully everyone is on the other side of it now!!!!! Man I felt like I was in the depths of hell these past few days! So anyways here is the update on Maxwell's appointments from yesterday.

Appointment #1 - Maxwell saw 2 dermatologist yesterday and they were very pleased with the way his hemangiomas looked. So pleased that she is probably not even gonna need to treat them at all!!! Praise the Lord for that one:) She also is in touch with a Dr at UCSF who actually named PHACE Syndrome. She is going to send all of Maxwell's info to her and see if she would like to join in on his case and maybe do a study on him. This was so great to here since one of the other PHACE mom's on my support group reffered her to us and I already tried to contact her. Praise the Lord, His hands are all in this. Maxwell's dermatologist is in contact with this Dr. everyday since they are good friends! So that was some good news!

Apppoinmtment #2- Maxwell saw the Nuero surgeon. He said Maxwell's brain looks good. He does have some fluid on the back of his brain but almost everyone does and that is fine. What is worring him is the tangeled mess of arteries that are everywhere. He doesn't know what to make of them and he said they are dangerous because if one of them ruptures he can have a stroke or die. So he is going to refer Maxwell to have an angiogram to get a better look at how his artieries and vessels are working. Some how (by the hand of God) he is getting blood to the right side of his brain even though his right coratid artery is a mess. He also said that there is a mess of viens that are most likly interfering with his hearing in his right ear. So he is going to have a hearing test done to see if he can even hear out of that ear.  So we are kind of in a holding pattern for that part, again.

Appointment #3- Maxwell saw the geneticist 3 to be exact. They said yes, Maxwell does have PHACE and that they can not really give us a good outlook on what his life is going to be like. This disease is so new to them that they have no road map to follow. So we kind of just need to have him followed very closely(which we are doing) to try and catch anything that is going on. They tried very hard to connect all of the different problems we have had with ourselves and our children and they really couldn't make any connections. We just happen to be really lucky when it comes to bad luck:( I wish it was the other way around so that we could play the lotto!! Wouldn't that be nice. But I guess we could be rich but we would still have all these medical problems so what will that make a difference?? Well I guess it would help we wouldn't have to worry about how we were going to pay for all of these appointments and procedures:) Oh well, we do what we can.

So this thursday Maxwell has his echo which every doctor stressed that we have done soon. I will post with an update on how that goes afterwards. Please keep praying:)
P.S. Will someone please tell me how to edit these post for spelling. My spelling stinks and I can't find the spell check on here!!

More info...

Maxwell had his EEG today. His neurologist said it looked normal so we just have to keep watching him and that he may be having them but we didn't catch one today so we will see.

Monday we go back to Oakland to meet with the dermatologist, the neuro sergon, genetisis and the nuerologist. they will be able to give us a lot more info on each one of his problems. I am still trying to get him in sooner to see the cardiologist for his echo but as of right now he is set to see her a week from friday.

So please keep praying if you will. This is so stressful on our entire family. Thanks

Update on Maxwell

Maxwell had his eye appointment today and got diagnosed with Right sided Horners Syndrome. I guess is caused by damage to the sympathetic nervous system. It isn't gonna make a difference in his vision at the moment and he will probably need glasses but that isn't that big of a deal. So that was some good news I guess. Here is a little bad news. Maxwells neurologist thinks he may be having multiple seiziers during the day so they got him in at 8:30 a.m. in Oakland for an EEG to see what is going on. Since we are going to be there tomorrow we are hoping to meet with dermatology, the vascular radiologist, the neuro surgeon and the genetisis. Please pray for us tomorrow as we battle rush hour traffic in the bay area, for our sweet cousin who is coming to watch our other kids and for all the doctors that they would know what to do for him and that they would squeeze us in since we are going to be there I will post another update as soon as I have one.

P.S. I stink at spelling and this new blog thing doesn't edit it??? so excuse the mistakes:)

Long time no write....

So I finally was able to sign into my blog!!! Some of my family members were wondering if I was ever going to post again and I guess it is time to do that now.

ALOT has happened since my last post. Let's see I had cancer, chemo for a while and now it has been 7 months since my last treatment and so far so good. I should officially be cancer free in June! We are so thankful that the Lord brought us through that very hard time in our live. So so many people had a hand in holding our precious family together and I can't even begin to list everyone but am looking forward to Thanking everyone of you when we are together in our eternal home!!!

Now this year we were hoping that we could start off this year on a better note with no major illnesses and just a break from the stresses that once were. Well It looks like God had another plan. Last week we found out Maxwell is gonna be facing some tough hurdles in his little life. What seemed as just a problem with his Hemangioma on the side of his face turned into a major medical problem that we are going to have to face for the rest of our lives. Maxwell was diagnosed with PHACE Syndrome. Here is a little bit of what it's all about:

PHACE Syndrome which is a combination of different abnormalities. Each letter stands for a different abnormality:

Posterior fossa- These are brain malformations that are usually present at birth. These brain malformations do not form after the infant is born.

Hemangioma- The hemangioma usually covers a large area on the skin of the head or neck (greater than 5 cm). The term "segmental" is sometimes used to describe these hemangiomas.

Arterial lesions- The abnormalities of the blood vessels in the neck or head.

Cardiac abnormalities/aortic coarctation- These are abnormalities of the heart or the blood vessels that are attached to the heart.

Eye abnormalities.

So far we know for sure he has the "H" and "A" part of it. Only the Lord knows haw this is all gonna turn out and why He is allowing our family to go through yet another crazy rare medical situation. As if losing a child six years ago to a rare heart condition, getting pregnant with triplets losing two of them and then problems with my pregnancy Maxwell being born with facial palsy, me almost dying a few weeks later only to be diagnosed with a rare cancer????????

Looking back it is just so amazing to me that we have gone through so much! But you know what we are still here stronger than ever before and it's only because God's grace has carried us through! So here we go again Lord, clinging to the One who sacrificed so much for us. James 1:2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.

So as we go through this not only is God working we know He will work through all of you too. So please keep praying for Maxwell. Here are some of the things he needs prayer for:

2/2/10 eye appointment to check if his vascular abnormalities are effecting his vision.
2/12/10 Echo cardiogram to see if his heart has been effected by the vascular abnormalities

Ongoing would be for physical comfort for Maxwell he has been very fussy lately and we are unsure if the vascular abnormalities are causing him pain right now.

Right now the Nero surgeons, vascular radiologist and genetics are pouring over his file to see how we need to approach everything. Please pray for wisdom and understanding as they do this.

And last but not least prayer for our other children that they would give us grace while we are dealing with us and that we would be aware when they are struggling so we can make sure we are not being consumed with our own things and still loving and caring for them.



A few things to be thankful for already are Maxwell's liver and kidney's are NORMAL!!! And when the neurologist saw his brain scan she said is looked good:)So I guess that is all for now. Praise the Lord everyone else in the family is healthy right now. I will update again when we know more.

Another update

The nodules in my lungs are where the cancer has metastasized to So I am having a full body cat scan tomorrow to see if it went anywhere else and will be seeing the oncologist on Friday or Monday. I will be needing chemotherapy and at my appointment I will find out how much and the stage of my cancer and everything else. I think my first treatment will be next week. Please keep praying for me. I know the Lord will take care of everything I am just really scared of all the side effects of the chemo. So please PRAY!!!!

Life update

So I have waited quite a bit to post an update on our blog. It was a little bit on purpose but not so much. I believe everyone pretty much has found out what has happened these last 6 weeks if not here is the rundown. WARNING!!! This is a very long story and there is a lot of talk of blood and medical procedures so read at your own risk!

March 9 Th I went to the Dr for a check up on my blood pressures for my pregnancy. My pressures were no good so they sent me directly to labor and delivery to take Maxwell out.
Maxwell was born around 1 pm 5 lbs. 14 oz. 19 3/4 inches long (a very tiny boy, just skin and bones!)and we went to recovery. In recovery they noticed his face seemed a little different and they called in the pediatrician. Come to find out Maxwell has Facial Palsy on the right side of his face. Basically the right side of his face is paralyzed. It isn't really noticeable unless he is upset and his right eye doesn't blink and takes awhile to close when he goes to sleep. So you can often find him sleeping with one eye open. Good news is it doesn't effect him to badly right now. We just need to be careful to keep his eye moist and protected from any scratches so he doesn't go blind in that eye. So back on to recovery..
So they sent me to my room and 2 days after my surgery I was in alot of pain. I told the nurse while I was bawling in pain from walking and she checked my incision and called the Dr. Apparently I had HELLP syndrome and my body was destroying my white blood cells and I wasn't clotting so I was bleeding into my incision! The Dr immediately ordered two pints of blood for me stat and there was my first blood transfusion.
2 days later I was better and getting ready to go home when I spiked a fever! Then came a battery of test to find an infection. I had blood drawn, urine tested and chest x-ray done. I guess they found a bladder infection and also found nodules in my lungs. The nodules could have been cancer but I have since had a cat scan and they say they are benign and I just have to have cat scans every six months to monitor them.
So now I am home recovering and almost two weeks after being home I am having heavy bleeding. I went to the Dr and they put me on some medicine to get it to stop, sent me to get an ultrasound to make sure I didn't have any retained pregnancy products and told me to go to the er if it didn't improve. I went to the er that night and the put me on more meds to get it to stop.
A few days later I woke up bleeding very badly and in extreme pain. I had to call the ambulance to take me to the hospital. After 15 hrs of bleeding out in the er, seriously I was in and out of consciousness and my legs were turning blue, a Dr who knew what he was doing and came in and said "she is hemorrhaging and needs blood now!" I was then getting my second blood transfusion and then wheeled into the or for a DNC that was to take 20 min. 2 HOURS later the Dr came out and said he did everything he could to stop the bleeding and he thinks he did it but I was not out of the woods yet. I woke up in my room and didn't remember much.
2 days later the bleeding started back up again and I was so done so I said take out my uterus. They had my uterus out within a couple of hours and with one more blood transfusion I was on the road to recovery. The Dr's said my uterus was pretty much falling to pieces when they took it out. A few days later I got to come home.
One week after my total hysterectomy I got a call from my Dr. Apparently I had cancer. Choriocarcinoma to be exact. Luckily he said they did the right thing in taking out my uterus. So now I am getting my blood drawn every week for the next ten weeks to see if the cancer hormones come down. If they get down to 0 I will be cancer free! If they stop coming down or start going up I will be sent to the oncologist for chemo and whatever else they need to do.
I am praying that I will be cancer free but know that the Lord has it all under control and I WILL TRUST IN HIM!!! I am not saying I haven't lost it once or twice OR maybe a few more times then that but ultimately the Lord is good and He will be glorified no matter what!!! AMEN?

So that is it for now I will keep posting updates on my lab numbers. For now here is a few pictures of Maxwell :)