Friday, February 6, 2009

MRI Results

Praise God! We got the news yesterday that there is no sign of that disease in McKenna's torso and abdomen. No further malformations were spotted. What a relief.

She is doing well. We won't know for a while if the sclerotherapy was totally effective so I'll update this blog whenever we have any news on that.

I am doing better as well. I'm still struggling with some symptoms, but much much better than I was. Everyone from the studio who has been praying for me and has sent or is sending meals-- I want you to know we are so grateful and blessed. It is a huge help right now for me. And also all of my substitute teachers-- thank you!

Love,
Amber

Wednesday, February 4, 2009

Procedure Day Details

McKenna is doing VERY well! She acts normal! Three of the four things I listed I was nervous about or dreading in the last blog- did not happen.

The first thing is I had a nurse ask me, “do you know if she’s receiving anesthesia or sedation?” I suddenly realized that I didn’t *really* know! They made it clear she would be asleep, but I just assumed anesthesia. She was intubated and under anesthesia for her last procedure and though I knew Sclerotherapy was less invasive then surgery it didn’t occur to me she may only have to be sedated. The nurses didn’t know either. Well-- as it turns out she was taken care of by sedation! As most of you know I like to ask lots of questions and be fully informed about the details so I felt a little foolish having completely not investigated that aspect at all. Oh well-- a good surprise!

The second thing is they let me (and Dave) go all the way to the room where she was having her procedure and hold her while they administered the sedation. She was still thrashing and moaning a bit when I put her down on the table, but her eyes were closed and she was unaware I was leaving. Now while it was a bit traumatic to watch her be sedated I definitely preferred that trauma to them taking her from me screaming and leaving me to my imagination of how terrifying it must be to have a bunch of strangers in masks take her away from mommy and then hold her down and do “I don’t know what” to put her to sleep. So second- good surprise!

The third thing is her radiologist Dr. Rivard originally told us he thought she would need a drain. After everything was over and we were being escorted back to get her a nurse informed me there was no drain. She said once Dr. Rivard got in there he decided that the malformation looked small enough, he decided the drain wasn’t necessary. Third- good surprise!!

There were a few very- un-cool moments .

When they put her I.V./Heplock in she was very upset and angry about it. She kept trying to tear it out with her other hand. She was so worked up they ended up having to shoot her up with some valium like drug to calm her down. It was still going to be a while before her procedure at that point. I tried everything to calm her without the drug. I had brought her favorite books and toys, Dave tried his special games he plays with her, I was singing dancing around with her in my arms-- we tried EVERYTHING. That was sad. When they drugged her- her eyes rolled back and she started moving in slow motion. She got this really goofy grin on her face. It was really sad and funny at the same time. I think I was crying and laughing about it. She was really hungry by this point too. It was noon and she hadn’t eaten since dinner the night before. Obviously it’s dangerous to be sedated with food in your stomach.

Another un-cool moment was after everything was over. She was pretty upset when I came back to get her. The nurses had tried to get her to drink some juice and eat some cookies and she very angrily turned them down. They commented on her temper. LOL! She is a very strong feisty little girl and I like her that way! The two things people commented on all day were how pretty she is and how feisty. (-: She stayed obviously angry at me until in the car on the way home I received some inspiration on how to make it better. She is easily righteously offended by Cole every single day. We have this ritual where he gives her a hug, says, “I’m sorry Kenna” and then gives her kisses. It instantly makes everything better in Kenna’s world. So I did that exact thing. I said, “that wasn’t very nice was it Kenna! Momma is so sorry, I’m sorry.” And then I gave her hugs and kisses and she brightened right up. LOL!

But- by far- the winner for the most un-cool moment was embarrassingly --me having a complete physical breakdown in the middle of McKenna’s physical exam at around 11am. I have been having an irregular heart beat (pvc’s) since Sunday afternoon and added to that was cramping (female variety) so severe that I was vomiting, face and extremities were numb and cold and I was barely remaining conscious. I ended up laying in McKenna’s hospital bed with a nurse, my mom, dad and an Anesthesiologist who did acupressure and acupuncture-- surrounding me trying to get things under control. David had to take McKenna out of the room. That nurse and anesthesiologist were so cool though!! It was really a suprise- in a good way- to have such like minded (energy work) people there right when we needed it! There was talk of taking me home or to a hospital that treats adults, but things calmed down and by noon I was able to function. There were a few people in and out who thought I was the patient (a big kid) not McKenna. I remember at one point some one asking,” who’s the mother?” and they pointed to me lying in the bed. And then in answer to the confusion they pointed to McKenna saying-- that’s the patient. And that’s the mother’s mother. (pointing to my mom) At that point I’m crying and laughing about how ridiculous the whole thing was. Anyway I did not want to tell this story to the world on this blog because it’s embarrassing , but so many of you have been very encouragingly making comments about how strong I am that I figured the humbling truth should be known. The last 3 weeks of extreme stress and exhaustion has caught up to me in very dramatic fashion and I am incredibly weak and sick. So yeah-- I need prayer. And I need to practice what I preach, evidently. Peace be still Amber! Sheesh! And Anita-- your prayer about my weary heart was *right on*! Thanks for having my back. (-: I’m still struggling this morning physically so pray for me.

One more un-cool moment-- As we were getting ready to leave the nurses told us to make sure we watched McKenna closely that she would be under the effects of the sedation for another 4 to 6 hours and that she’d have trouble walking, don’t let her do stairs etc… We were like-- yeah, sure-- of course! So we get home and McKenna immediately starts staggering around like a little drunk. She can hardly walk, but she’s very happy to be home. I collapsed in a chair and Dave on the couch. Nate and Cole were chilling watching t.v. and mom turned her attention to me for a few minutes. Suddenly mom and I looked around and it’s like, um--where’s McKenna!!!! My mom jumps up and gasps. There she was up on top of the dining room table! I told you! Did I not say she’s crazy!! 0-:

So we won’t know the results of the MRI until McKenna’s surgeon Dr. Snyder calls. I’m expecting that call within a day or two. In a couple of weeks we will have a follow up appointment with Dr. Rivard (her radiologist) to assess how well the sclerotherapy worked.

I greatly appreciate you care and prayers! Grandpa Howard (Father-in-law) thank you for coming to the hospital in the middle of your busy day to pray for us! All of you guys have no idea how much of a support and encouragement your comments and prayers are to me! And thank you Jennette for taking over with the blogs.

Love,
Amber

Monday, February 2, 2009

The Sclerotherapy

Today McKenna had her procedure done, and it went very well. She didn't even have to be intubated during her surgery, only sedated, which was very good.
She also didn't end up having to have a drain that Amber has to clean and take care of, which will be much easier for recovery at home.
Although these things went well, they really won't know for sure how effective the sclerosing agent was for at least a couple of weeks. Pray that the agent traveled successfully into the smaller malformations and that Kenna won't have to go back in for more injections.
The MRI was done today as well, but the results of that will not be known for a couple days.
Kenna recovered well from the surgery, she seems a bit "punch drunk" according to Grandma, but all in all is doing wonderful!!
Also, pray for Amber. The stress of all of this finally caught up to her today, and she is feeling very sick. Aunt Andrea and Chris Scott are doing TKM, which is helping, but some prayers sent Amber's way would be a huge blessing.
Thanks for all your prayers and I will probably update again soon, depending on how Amber is feeling!
Love,
Jennette

Sunday, February 1, 2009

Lets Get This Show On The Road



The first picture is of McKenna's original Malformation. That one is now completely gone with a very thin scar in it's place.

The second picture is the one we are working on tomorrow. As you can tell it is about half the size of the first one.

McKenna is healthy so it looks like we will be able to get this show on the road concerning her Lymphatic Malformation.

Monday, Feb. 2nd 2009
1pm- Sclerotherapy
2pm- MRI

This all taking place a Children's Mercy downtown.

She is having Sclerotherapy which is injections into her malformation that are supposed to scar the tissue down. Pray that the sclerosing agent does it's job safely and effectively. We need it to travel from the bigger malformation they are injecting into the smaller ones that branch off of it so she doesn't have to go back for more injections. It could take a few days maybe a week or so before we know the results.

She will have a tube coming out of the malformation that will be connected to a drain that will be draining blood and fluids. This will likely be there for 5 days or so. I have to empty the drain and keep track/log the output. I'm having a hard time wrapping my head around how this is going to work. The first time I was able to safety pin this to her back but she was 6 months old and barely mobile. Now-- well-- she's crazy. I find her on top of the back of the toilet, the sink, the dining room table, the kitchen table, she loves to wrestle and roll around, turn in circles until she gets so dizzy she falls, she is a really restless sleeper too etc.. Suffice it to say, I'm a little anxious about keeping her and that drain intact this time.

Concerning the MRI-- this is an exploratory deal. She was not expected to get another malformation in a different place after we removed the first one. This new location is in the general vicinity of the first one, but not close enough to be obviously connected. There is a condition called "Cystic Lymphangiomatosis" that depending on how it presented could be very serious. It would involve her entire lymph system possibly being malformed. We are not expecting this. The doctor's words about doing further testing were along the lines of- "for peace of mind".

Now just because we get a clean picture this time doesn't mean this condition is completely ruled out, but it goes a long way to showing she doesn't have a severe and perhaps deadly presentation. A child's lymph system is still forming/growing/expanding until roughly the age of 3 years old. So we have another couple years of keeping a close eye on things. The other purpose of this MRI is that we will have a picture of her insides at 19 months old to compare to other pictures in the future if need be . . .

So-- I'm nervous! I'm nervous about her being under anesthesia for possibly up to 3 hours, I'm nervous about the results of the sclerotherapy and I'm nervous about the results of the MRI. And-- I'm totally dreading that moment I hand her to the nurse and we part ways-- possibly with her reaching and crying for me.

However-- I have faith that it will all be okay.

Pray for us!
Love,
Amber

P.S. FYI-- all of the previous entries- to this one- are notes and emails I've written in the past about McKenna's situation. I've put the date they were written in the title.

Procedure Canceled (Jan. 7th 2009)

I'm relieved because Rachael's ultrasound went so well yesterday! A healthy boy!! Yeeeeeeah!!!

McKenna however has been sick, *is* sick and so her anesthesiologist, radiologist and a nurse made the decision today to cancel her procedures tomorrow. I know it is the right decision, but I've had some tears because I'm exhausted of this thing hanging over our heads. It is a very complicated thing to schedule these procedures the way they need to be scheduled so we are looking at *weeks*-- maybe even months before they can get her in again. They are working hard to try and make it as soon as possible . . .

I'll let you all know when we have a new date on the calendar.

So-- she still has her latest Lymphatic Malformation and we still don't know if she has the *more* serious "Lymphangiomatosis" . . .

Amber

Questions and Answers (Oct. 7th 2008)

McKenna Update . . .10/7/08

So we met with the Radiologist today. We were in a conference room with Mckenna’s scans up so we could look at them while we talked. I insisted on this appointment as they had originally just had us going in for the procedure without any consultation. Dr. Rivard was great and seemed happy to meet with us.

My questions:

1. Question- What sclerosing agent will you be using?

Answer- Sotradecol

This is exactly what I wanted to hear! It is much milder and safer than straight alcohol. Yeah-- no battle here…

2. Question- What are the possible side affects?

Answer- whenever you break the skin-- infection and bleeding. Also sometimes there is some mild necrosis (tissue death) of the overlying skin. Generally mild and requires some antibiotics. Worse case scenario-- plastic surgery .

3. Question- Will this be a one time injection or will she require this procedure again?

Answer- She has one large (Macrocystic mass) that connects too a small area of some smaller ones. We are going to inject the larger mass and hope the agent travels into the smaller ones as well. If it does not it may require another injection at a different time.

4. Question- Will she require a drain?

Answer- yes-- for a couple of days. He showed me the drain and how it was going to work. Interestingly this one won’t require stitches.

5. Question- will she need pain meds?

Answer-- We will send you home with a prescription you can use at your discretion. (I’m happy about this!)

6. Question-- will she be receiving precautionary antibiotics?

Answer- No! ( I’m happy about this!)

7. Question- will she be kept for 24 hours?

Answer- No. It is an outpatient procedure. (I’m happy about this!)

8. Question- Dr. Snyder feels we should have a CT Scan to make sure she does not have a more diffuse condition. Do you agree?

Answer- it’s very unlikely she has this condition, but yes-- I agree. Information is always a good thing.

9. Question - why a CT Scan over an MRI?

Answer- to be honest- ease and availability. (WOW-- thank you for your honesty!)

He went on to acknowledge that there was radiation exposure but it’s effects are undetermined and likely mild however he did not think negligible and completely respected concern about it.

I told him how I had been in contact with the Vascular clinic At Children’s Hospital of Boston and that they always do MRI’S he acknowledged that was true-- (they sometimes consult with them-- YEAH!) and he intimated it was probably because of the possible radiation exposure that they use MRI on the kids instead if CT. I am currently awaiting an answer from Boston on their reasons for choosing MRI.

He said it was my decision and he would respect either way.

CT is much faster and it’ll happen October 24th if we do that. MRI takes an hour and I’ll have to reschedule everything. It could be possibly 6 to 8 weeks later. I asked him if there was any harm in waiting that long and he said , “No.” That amount of time in her case would not make any difference.

So I’m in the process of rescheduling everything. I want the sclerotherapy to be piggy backed with an MRI and I am willing to wait for that. I can’t help thinking if Mckenna’s lymphatics/immune system is in anyway abnormal or impaired why would I take the chance of exposing her to radiation. What if the CT Scan was clean that day and then the radiation caused her to blow up more LM’s(Lymphatic Malformations). I know that’s not entirely scientific, but it’s just an intuition.

10. Question- will their be contrast used in the scan?

Answer -- yes-- they’ll administer it I.V.

11. Final Question: Her LM’s blow up suddenly when there has been no prior indication anything is wrong. She is exhibiting no symptoms indicating she has a terrible problem with her insides. Is this scan not just a picture of the day? If it’s negative will that really give us any final answers?

Answer-- You are right-- it is just a picture of the day, but it will go a long way to ruling out any kind of severe systemic condition. And gathering information is always a good thing. (I am satisfied with this answer.)

All in all I'm very pleased with this doctor and how this consultation went. We did get approved for medicaid so finances shouldn't be an issue-- thank God. Pray for all of the re-scheduling to go smoothly and that Dr. Snyder is cool with signing off on the MRI instead of the CT. And of course we appreciate your prayers for healing and good health for McKenna.

Love,

Amber

McKenna's Ongoing Journey With Her Cystic Hygroma (Sept. 24th 2008)

So it's been about 7 months since McKenna's surgery to remove her Cystic Hygroma.

Here are some statistics for you: 1 in 6000 to 16,000 is the estimate I've seen for live births with a Cystic Hygroma. Most Cystic hygromas (50-65%) are evident at birth, with 80-90% of CHs presenting by age 2 years. Some authors believe that all CHs are present at birth, although they may have not yet fully manifested at that time. 75% are on the head and neck. 20% are in the axillary region where McKenna's was. McKenna's presented at 3 months of age. Karyotypic abnormalities are present in (60-80%) of the cases diagnosed fetally. Over the summer we had McKenna's chromosomes tested and she has no abnormalities.

Yes-- Rachael's baby Gracie Anne had a Cystic Hygroma which caused a back-up of fluid in her body and subsequently caused her death. Testing showed that Gracie had Turner's Syndrome. So the genetic counseling we have received has been that they are not connected. Even though pathologically they are the same thing. McKenna's is isolated and Gracies was caused by her Turners Syndrome.

Here is an explanation for what a Cystic Hygroma is: Simply, much like your vascular system, there is a certain path in which lymphatic fluid flows and is processed throughout your body. In LM (Lymphatic Malformation) patients, the natural flow of the lymphatic system has been disrupted branching off in different directions into dead ends or like streets in our neighborhoods, a cul-de-sac, if you will. Some of the cul de-sacs create large pockets of fluid. There is no "cure" for Lymphatic Malformation. In some cases, of localized LM, surgical resection or sclerotherapy can eliminate the condition without reoccurrence. However, treatment is aimed at keeping the condition under control not curing it. When the large mass is removed there are lymphatic channels or vessels left behind. Remember the cul-de-sac's? Well, at the end of these vessels are dead ends or cul-de-sac's. The pressure builds and new vessels begin to branch off trying to reach back to the lymphatic system. They meet a dead end and the process repeats itself over and over. This happens just adjacent to the site of treatment and may eventually run back into the site of treatment. Reoccurrence is really the body's continued effort to fix it's lymphatic system.

The problem with these malformations are:
1. They can become infected.
2. They can hemorrage
3. They can invade and compromise surrounding bodily structures.
4. They can be disfiguring

We were told that McKenna would have a 90% chance that nothing else would happen or be detected after her surgery. Unfortunately Friday Sept. 12th I noticed a bump under Mckenna's collar bone near her shoulder on her right side. This *is* the same side her Hygroma was on. She has since had an ultrasound and we've met with and discussed this new development with her surgeon.

The surgeon feels/hopes it is connected with her original mass.

The reason we hope this is connected to her original mass is because a separate area of damaged/deformed lymph tissue is a disturbing thought. Meaning she could possibly have much more than just an isolated issue. If that were the case this condition would be called "Diffuse Lymphangiomatosis" This is a disease that depending on how it presented could be very serious and even fatal. The surgeon recommended we have a CT scan done of Mckenna's torso and abdomen to make sure there are no other visible malformations deep inside her body. He used the phrase, "for our peace of mind" . . .
He is also recommending Sclerotherapy for this new site. He feels there are so many blood vessels and nerve endings there that we would be taking less of a chance damaging something if we went with injections.

So-- We have to decide what to do. Do we proceed with sclerotherapy? Do we do the CT scan? Do we get a second opinion?

Also we found out-- someone dropped the ball and sent out our annual Medicaid forms to the wrong address and we were dropped. We are in the process of "hopefully" getting re-approved for coverage. Pray that works out for us.

We appreciate your prayers for clarity and peace in our decision making. And of course for healing for McKenna!

Love,
Amber

McKenna is home from the Hospital- Her Story (March 7th 2008)

Thank you- thank you -thank you to everyone who responded with posts, emails and phone calls of prayers and support!!!

McKenna did-- and continues to do very well!!

WARNING--The following is long! It helps me process to write it out though.

McKenna was perfect pre-op . . . She didn’t fuss about not getting to eat-- she just sat quietly in her car seat, played on the exam tables and dozed on my shoulder for a few minutes.

I had a bit of a hard time right before they took her in to surgery-- which is to be expected, but the pre-operation orientation I had gotten from the nurses on the phone over the last couple of days was totally WRONG!!! They were supposed to go over everything with me so we would know what to expect. Well- I was told she would be having outpatient surgery, that she would go home that day, that surgery would last about an hour and instructions on when to stop feeding her before hand etc... I asked a bunch of questions like-- would her sedation be delivered in i.v. form, would she receive antibiotics, what would they be giving her for pain management in recovery etc... and the nurse didn't know the answers to any of those questions! Then the last person we met with before McKenna went into surgery was her surgeon and he proceeded to tell us the surgery could take 2 hours, she would be intubated for the surgery, kept and closely monitored over night and would be evaluated by a bunch of pediatric specialists and sent home with a drain in her side that would stay for a week. I would be learning how to empty the drain and take care of that etc...

Okay-- so if you know me--AT ALL-- you know this REALLY threw me. I would not have changed anything and I totally agree with how they took care of her, BUT I LIKE TO KNOW EVERYTHING! And those details were HUGE-- in my opinion.

As I expected the moment I had to hand her to a stranger/nurse and walk away--was VERY difficult. In the waiting room my father in-law came to pray with us and he got me talking and distracted which really helped pass the time. Then Dave brought some lunch to the waiting room and forgot something-- I went down to the cafe to get it and I got lost in that huge hospital. I got back about 15 minutes later to David--a little pale in the face-- saying SHE'S DONE!! She did good! I missed the post-op meeting with the surgeon-- I couldn't BELIEVE it! But it was definitely for the best because it came way quicker than we expected and when they called Dave into the little private room he was a bit nervous thinking something went wrong. I would have been really FREAKED.

The surgeon told Dave that the Cystic Hygroma had come out really easily and there was one big one and a few smaller ones around it that he also took out. He said it only took him about 10 minutes!!! WOW! He told us before hand that the concerns were that he not damage any nerves that go into her shoulder and down her arm and also any blood vessels. Neither of those seem to be an issue at this point! Now we just have to pray that she stays out of the 10 percent that have a reoccurrence.

When they finally came to get us to say we could see her I was so anxious to hold her. I had tried my hardest to get the nurses to let me be with her in recovery. I told them I practiced a form of hands on energy work and that I just wanted to put my hands on her to help with pain and inflammation and I just wanted to be there when she woke up. They said no . . . For patient confidentiality reasons-- it's not very private and other peoples kids are in there. *SIGH* I also told one of the surgical nurses that if she had bleeding issues, if an artery was nicked etc.. to put her right hand anywhere on McKenna's body with her left hand on top at a 90 degree angle and that it would REALLY help. I said, “I know you think I'm crazy“... Then she said-- in a high voice with big eyes and a smile stuck on her face-- oh no honey-- I don't think you are crazy . . ." Um-- yeah . . LOL!

So as I was waiting for them to bring her out and I could hear her little voice moaning and crying. It took 20 minutes because of a crib issue for them to bring her out. I was pacing and so upset I just want to BUST down the door!!! That was the WORST PART!

She was intubated for surgery-- so she had tape marks on her face and a bit of a raspy voice afterwards. It was really hard to see her and hold her while she was in pain and hooked up to monitors. She had wires and tubes everywhere. She was hooked up to the monitors all the rest of the day and night. I quickly learned when they would go off with alarms it was usually because she had moved and a wire had gotten smashed or kinked or something. I felt very awkward holding her trying not to bump her incision sight which is under her right armpit and down her side and not get tangled up in all of the wires and tubes. I also am really sore from trying to hold her so she was in a comfortable position, remain as still as possible and do “right on” or some other TKM hold.

As a lot of you know I question everything. I'm exhausted, but I feel good about her care. Every time someone came in the room to shoot her i.v. with something I asked what it was, what it was for and re-evaluated with the nurse if I wanted it for her etc... I let them shoot her i.v. twice with a pain medication that is in the Ibuprofen family and after the second time she was hyperactive for 2 and a half hours-- she could not stop moving-- even with her eyes closed --she was trying to sleep and couldn't stop. At 3 am they came in to give her more and she was fast asleep and obviously not in pain-- I said no. They gave her one more dose of Percoset by mouth before we left and that's it. I have a prescription for her if she really needs it, but she is doing VERY well and seems comfortable most of the time. I also turned down glucose water, mylacon (sp?) for gas and other oral pain killers. I had to tell countless people that NO she had never had any immunizations, but only 1 person wanted to talk about it and was pretty respectful.

She vomited my breast milk once a few hours after surgery and had a bloated gassy tummy, but she handled all of her discomfort amazingly and really didn't seem to be in severe pain.

She is a very brave little girl and very tough! Last night when I put her down in the hospital crib to try and get her to sleep for the night so I could lay down-- she actually pushed up on her hands and knees and rocked and tried to crawl. I was shocked she already felt like doing that! She slept much better than I expected too.

Ma (mom) and Aunty Ta Ta (Rach) brought Cole up to visit in the evening. He fell asleep on the way there after a hard days work playing at Ma’s house and he slept up until the last 40 minutes of his 3 hour visit. He did okay, but wasn’t prepared for me and Kenna to be gone all night too-NONE OF US WERE! I talked to him on the phone before he went to bed and he was very sad and anxious-- poor little guy. He also was trying to understand the sight of all of the wires and bloody tubes and monitor etc… He would ask if Kenna was okay-- a lot.

Overall I’m very pleased with how everything went and the care was outstanding! I will write a letter about the pre-op communication issue, but not for the sake of complaining just in the hope it would not happen to someone else.

I also want to say that this experience along with Gabriella Marie Keena’s short, but beautiful and powerful life has taught me to never to take health for granted. McKenna was not ever critical and by some standards this was a walk in the park compared to what some precious babes and their parents go through. This experience only showed me the great chasm I look over to try to even began to understand what my cousin Jennette went through as precious angel Gabby’s mother. This may sound cliched-- but--I swear Gabby’s spirit was close to me the last 2 days because I could NOT stop thinking about her. Thank you Gabby for you sweet life and for watching over us. We will never ever forget you! And Jennette I will never stop praying for peace and healing for you. And health and happiness for your future children.

I love you all thank you for your prayers and your care!

Love,
Amber

McKenna's Surgery Is Tomorrow! (March 5th 2008)

It's tomorrow . . . I'm dreading it HORRIBLY. Please please pray for her. She should be in surgery around 9:30am and in recovery before 11am. Obviously-- her Cystic Hygroma has not gone away. It is growing with her as they said it would. Pray she handles the sedation well, that they get ALL of the defective tissue without damaging her breast and that she does not have major pain afterwards. Thank you for your prayers!!!

Love,
Amber

Update On McKenna (Oct. 29th 2007)

So we met with the Pediatric surgeon at Children's Mercy Hospital on Wednesday. He was more informative and attentive then any other doctor as of yet-- so my over all impression was good. He also agrees that the tumor is a Lymphangioma. He says it is rare, but not incredibly so . . . He does have children/patients he treats with them.

So he described it like this-- basically it's a piece of lymph tissue that is not hooked up to the rest of her lymph system correctly-- so it's like a dead end. Once lymph fluid went in it had no way out so it backed up and created the tumor. According to him this is usually an isolated event, but since it is a birth defect she could have defective tissue elsewhere that could cause tumors. It's impossible to know until there is a problem though because the tissue is so microscopic. Of course we are hoping it is indeed an isolated event!!

He said the risks with not doing anything about her tumor are that-

1. It could become infected-- the obvious reason is it is stagnant fluid that probably has toxins in it. This would be bad and require hospitalization and i.v. antibiotics.

2. It could hemorrage-- not deadly, but it would be ugly and traumatic.

3. As she grows it will grow and could wrap itself around vital structures making it harder to remove.

According to him there are two options--

1. Surgery- a 2 hour procedure where they would cut her open and try to remove all of the defective tissue and tumor. She would be under anesthesia and on i.v. antibiotics. There is a 14% reoccurrence rate and there would definitely be a scar.

2. Sclerotherapy-- (a new way of taking care of Lymphangiomas) A 1 hour procedure done by an Interventional Radiologist-- where using Ultrasound as a guide they would insert a needle in her tumor and inject a drug of some sort that would scar the tissue down so no more fluid could flow in. They would install a tiny drain under her arm so as the tissue scarred down the fluid would drain out-- the drain would be removed a few days later. She would still have antibiotics and still be under anesthesia, but it would be less invasive with little scarring on the outside. This is a fairly new way to treat Lymphangiomas so there are no percentages about success, failure, side effects etc...

The surgeon said if it were his kid he'd look into Scelrotherapy. So he contacted another doctor who does Sclerotherapy and after reviewing McKenna's case he has said she does seem a good canidate for this.

So now we have a decision to make . . .

Honestly-- it all sounds horrible and is against everything I believe about how we should treat our bodies. My children are not immunized, we do not do antibiotics(unless it is a very severe infection), we do not do cold medicine or tylenol. McKenna has not had any man-made drug or medicine of any sort EVER!!! (in her time in the womb-- I had nothing either) I think modern medicine has it's place in emergencies, but they waaaaay over do it-- everywhere else. I do not take ANY experts advice or opinion without looking into it myself. And I believe our bodies are amazing and have the ability with some wisdom, instinct and facilitation to heal itself.

That said-- I do believe this is a defect. And that something should be done.

My theory on how it happened is-- Mckenna had just started sitting in her airplane saucer the week her tumor came up. The morning it happened she sat in it for almost an hour and was leaning forward/propped up under that right armpit the whole time. I believe maybe she was putting a bit too much pressure in that spot and maybe cut off some circulation. Her body responded by sending extra fluids rushing to that area and some defective tissue that hadn't filled with fluid before-- filled up. Most of the doctors are poo pooing this theory, but I don't CARE!! Doctors are amazingly disinterested in how things happen and waaay too eager to treat symptoms and remain ignorant. So if her body had not filled that area with fluid before it's because it was not needed and not used under normal functioning circumstances. Therefore could her body drain and absorb the fluid and resolve the tumor-- I think it could!!!

We need results though-- not theories!!! Soooooo our decision is we will do everything we know to do naturally until the 3rd week in December. I am done teaching for Christmas vacation then... I will schedule the sclerotherapy for that week-- I'm choosing the Sclerotherapy because it's less-invasive. I really hope it will go away-- obviously . . . But if it does not-- I will be grateful to medical science for taking care of it.

Everyone pray that it goes away!!

Love you all . . .

Pray for McKenna (Sunday, Oct. 21st 2007)

Friday morning as I was changing McKenna's clothes-- to my horror I noticed this big cyst/tumor like thing under her right armpit on the side of her chest. I rushed her up to the doctor and they were not sure what it was-- so they sent me to Children's Mercy Hostpital for an ultrasound. The doctors have called and they think she has a very rare congenitial defect of her lymph glands. It's called a lymphangioma. The good news is it's not life threatning. The bad news is it's pretty obvious and they think it may require surgery-- especially for cosmetic reasons. I've asked questions like--"Will it grow back if it's surgically removed?" "Will she get more in other places on her body?" "Will it get bigger?" "What is the cause?" "Could it go away on it's own?" All the doctor can say is-- I don't know-- this is really rare.

So you can imagine-- Dave and I are in complete shock. When I dressed her for bed the night before it was not there. We have an appointment to meet with a pediatric surgeon on Wednesday morning. I am not AT ALL ready to cut into her though. We are going to do a lot of TKM and pray and hope it resolves itself.

I am very grateful that it is not harmful-- although I'm still unsure how the docs could know that with only an ultrasound, but for now I'll trust... Even though it's not harmful physically-- it could be harmful psychologically to her when she gets older. You don't want your child to have to deal with something like that. Also we just have no idea what the future may bring since this is so rare. Of course I don't want my beautiful daughter to have a deformity that everyone would stare at etc... But-- even though I'm battling fear about it-- I do have a lot of faith that it could resolve itself through prayer and TKM.

I know you all will pray!