Thursday, September 30, 2010

Brian's Second Port

Always a happy boy! Brian is so happy that when he is upset or really grumpy/angry it tears us up. He has such a great personality. Here is Brian on Wednesday, five days after surgery. They used the same site as the first port that we had removed almost five months ago. (removed April 30, 2010) The doctor said that he removed some scar tissue from the previous two surgeries- one to put the first port in and one to take it out. So, here is a happy BB showing off his battle wounds. 

Tuesday, September 28, 2010

Chemo & Steroids

Today we had our appointment with our Pediatric Hematologist/Oncologist. Brian has 30 weeks of chemo and steroids ahead of him. His steroids are 4 to 5 times stronger than the one he took last go around. Brian knows just how difficult this is on him and he remembers how much he hates chemo. He was so tuckered out today from the stress and build up of "the appointment" that he fell asleep in my lap as we chatted with the doctor. Brian ended up not having his first dose of chemo today as we are giving him another week to adjust to the new port and let the surgical wound heal. He will be starting steroids tomorrow as soon as I get the prescription filled.
  I am sure there is plenty more I could add or write but we are all just plain tired. This is emotionally draining and leaves us physically exhausted. More later.

Monday, September 27, 2010

Our Weekend

So, Brian has been getting a lot of attention the last few days. (Well, really, the entire last year.) This past weekend William has been sick with the throw ups. He has gotten some attention (read: normal level of attention for a sick child) and even got to sleep on the floor in Mommy and Daddy's room. However, William is our sensitive guy. Where Miss Ansley will demand your attention and tell you straight up that you are failing her, William will internalize his feelings and take everything personally. He can tell that Brian is getting some extra attention and "how are you doings?". William threw up most of Saturday evening and has been unable to eat and complaining about his throat ever since. While Mommy assumed that William's throat was hurting, she assumed it was just sore from throwing up so much. Mommy thought William was just searching for reassurance that we will give the same level of care to him when he is sick as what Brian is receiving. Since William was still complaining this morning and didn't eat breakfast, Mommy called the pediatrician. Turns out William has sores in his mouth and in his throat from some virus. Good thing we LOVE our pediatrician. I think we will be seeing her frequently this fall/winter as we try to keep the kids well so Brian can avoid hospitalization.  
This past Friday we were sent home with some sterile packages and instructions on sterile field and what to do to change Brian's bandages from his surgery. Apparently this is NOT the norm. I will not say which side, but we were dealing with the surgical nurses and the oncology nurses and apparently one side didn't provide weekend support (a doctor changing the dressing). We were left with the responsibility of changing a wound that CANNOT get infected as it is a line into the main artery. Apparently they didn't realize that we were still in shock about walking down this path again and probably missed half of what they said. This is just a peek into some of the stress we deal with. One of the instructions was DO NOT remove the steri strips. When we got the bandage off we realized there were no steri strips! WHAT?! It has been stressful. We try to lighten the mood and be silly when possible because stress levels have increased dramatically in our home the last few days. Here is a picture of the kids and me making faces in the mirror at the pediatrician's office this morning.

being silly at the pediatrician's office while we wait our turn

Sunday, September 26, 2010

Brian's Best Friend

Brian (as Spiderman) and Ellie
    This precious little girl is Brian's best friend. One year ago when Brian was first diagnosed Ellie colored a picture and decorated it with Cars stickers just for Brian. Brian liked it so much that we taped it to his wall beside his bed. Today after church Ellie dropped by our house to give Brian another sweet picture and note. She looked through her coloring book for just the right picture for Brian. If you can see it is of Hello Kitty at the hospital and the doctor is giving her a check up.
 Brian's first picture from Ellie stayed taped to his wall for months and months! We still have it. It's wrinkled and torn and very special. Mommy had set it aside to go in Brian's scrapbook, but when the new picture was dropped off this afternoon Brian wanted them both taped up next to his bed. William asked Brian if he was going to marry Ellie since he likes her so much. Brian said, "No. I am going to marry Mommy, but Ellie is going to be my best friend forever."
Ellie's mommy told me that Ellie never forgets to pray for Brian and consistently reminds her parents to please pray for him. 
Deuteronomy 6:5-9  Ellie's parents do a wonderful job teaching and showing her God's love and His commandments. Ellie's love for God and compassion for others (right now specifically Brian) is such an encouragement. What a reminder to us adults as we see this four year old live and love. Mark 10:13-16  

Brian's special Ellie pictures next to his bed

Friday, September 24, 2010

Update Friday 9/24/2010

Today Brian had surgery to have his port implanted. He was NOT happy to go and it was a very difficult day. It started off kinda crazy as everyone we attempted to contact to watch the other three kids was not available to help. Fred had to stay home with them while we waited for Aunt Dabney to arrive from Panama City. (She's the perfect example of a selfless servant. God gave her a heart to think of others before self for sure!!) So, Mommy and Brian went to the hospital at noon and Daddy met up with us a little after 2:00 PM. As is typical for the hospital, they were running about an hour behind schedule. That totally worked in our favor today. We were fortunate that Fred arrived about five minutes before Brian went back for surgery. Fred got to hold Brian and reassure him that we were both there for him. Brian got Versed to calm him down before going back for surgery but they gave it to him about an hour before they took him back so it was starting to wear off. Mommy had promised Brian she would be with him until he fell asleep and there when he woke up. In the past when Brian has had a surgery they take him back at the height of the Versed drug working. So typically he would go just about anywhere with anyone and have no idea what was going on. Today he cried and got upset. He was reaching his arms back towards us as the nurse walked away. He was saying "Mommy, Mommy, can't you be with me in my room?" It was tough. Fortunately he doesn't remember that. Unfortunately Mommy does.  
The surgery went well and Brian now has a port in his chest to start chemo again on Tuesday. When he woke up from surgery he was crying and said "what's in me?" Brian was also really upset with Fred. Brian didn't want to talk to him or look at him. When I talked to Brian about why he was mad at Daddy he said he was mad because he didn't want Daddy to hold him down again. He knows that a port means chemo, and chemo means Daddy having to physically hold him down and restrain him to have the port accessed. It's just tough. Brian's four. We're praying that Brian will not need to be restrained to access the port this time around.

Brian before surgery. While we talked about his port he said to me, "Mommy, just two ports, right?" Meaning the port he had last year, the one he was about to get and then looking for reassurance that he would not need another one after this.

Photo by Brian. This is what he saw while waiting for surgery.

Brian was very grumpy and mad that he had to have a new port. Mommy and Brian were making faces to show just how grumpy we were about the port. The grumpy mommy face made Brian laugh. It lightened the mood a little bit.

Brian enjoying a little bit of Versed. That stuff totally relaxes him! (For the record he does the thumbs up thing alot. It's adorable. I didn't make him do that.)

Brian after surgery, but before he woke up in recovery.

Brian at home tonight. He got a new toy for being so brave today. If he keeps this medical track record going he will own every Toy Story character ever made really soon!

Thursday, September 23, 2010

One Year Ago & Today...

One Year ago today Brian had his port implanted and his first round of chemo/steriods. Today we received the call from the dermatologist that the pathology report came in from the biopsy. It is Histiocytosis. Again. Brian will have to have another port implanted and start a more agressive chemo treatment.
  We haven't received a call from the Oncologist (probably will tomorrow) so we aren't sure when Brian will be hospitalized for the port implant surgery and first round of chemo. We will let you know when we find out. Update: The oncology nurse just called and said that our Doctor is at a conference in Texas. It may be Monday or Tuesday before we are admitted to the hospital. Update of the Update: Brian is having his second port put in tomorrow.)

Batman Brian
Please check the blog for updates and prayer requests. As you can imagine it is very difficult to tell "the story" repeatly to all who love us and care for us. It is very draining. We will probably not be answering a ton of phone calls as we want to focus on Brian and our other three young children. However, we appreciate all the prayers and notes of encouragement. It really lifts our spirts to know just how many people and exactly who is praying for Brian Robert. So, please, if you are checking our blog and praying for our family send us an e-mail or leave a comment. While we know that God is with us and we are not alone, we know that HE made us to need each other in the body of Christ. You offer us a lot of encouragement just letting us know that you are praying and keeping up with what is going on with Brian's treatment. THANK YOU IN ADVANCE.

Wednesday, September 22, 2010

Update 9/21

Brian had a biopsy of one of the bumps on his scalp yesterday(9/21/10). He was so brave. We told him what he had to do and he was OK. He asked Mommy twice, "just one needle in my head, Mommy, right? Just one needle?" When we got to the appointment he was Mr. Personality and never freaked out. He chatted with everyone and told the doctor what was going to happen. She reassured him and told him step by step what was going on (minus the razor digging part of his scalp off...he couldn't feel that part b/c the "one needle" made him numb). He did AWESOME! He never struggled to get away from Mommy's grip and never jerked his head away. He didn't cry or fuss. I was so proud! After she finished Brian turned and looked at me and said, "I was so brave, Mommy. I am a brave, big boy!"

Brian's "Rain Forest Cafe"

We will find out the results in one week. If it is LCH then we start chemo again. Being that Brian had his port removed on April 30, 2010 we would have to have another one put back in. That conversation with Brian was tough. He knows what that means and he HATES chemo.
Please be in prayer that Brian has some other dermatological issue and not LCH again. As the Doctor told me yesterday, we have very good reason to assume it's LCH. Given Brian's history that is probably what it is, but we should just wait until we get the pathology report back in a week. It could be something else. We shall see.

Even if we have to start over with a more aggressive chemo (higher dose and longer treatment) we know we are in God's hands. HE is faithful and HE has promised to never leave us or forsake us(Deuteronomy 31:6, Josh 1:9, Heb 13:5). Trusting in HIS sovereignty doesn't mean that we understand. Or that all things work out "perfectly", but that in HIS sovereign hands we rest knowing that HE is there with us through the chemo. We know that HE is our shield and reward so we can trust in HIM (Gen 15:1). HIS grace is sufficient and HIS power is made perfect in weakness (2 Corinthians 12:9). We pray that we would reflect HIS glory no matter what path we may have to take (1 Corinthians 10:31). As a Mommy, I pray that Brian and our other three young children would grow to love God and know HE is a loving God even amidst great suffering and trials.

Monday, September 20, 2010

Brian's Diagnosis

November '08- After we moved to Pensacola we got the kids established with a new pediatrician and did their well checks. She noticed Brian's scalp was scaly and bumpy. Mommy told the doctor that we thought it was Molluscum (thinking we got it from our cousins) and that we were told that nothing is done for that and it would go away on its own. Mommy told the pediatrician that it had been eight months and we had pretty much ignored it. The doctor then told Mommy it was not molluscom and probably a bad case of cradle cap that went ignored and untreated for so long. We were given a prescription shampoo and told it would take a while to clear up. No big deal. Picture of health and doing great, meeting all of his developmental milestones.
April 2, 2009- Mommy takes the three older kids to the dentist for a regular cleaning. Mommy mentions that Brian's gums appear more red than the other kids and he HATES having his teeth brushed. Mommy mentioned that the back of his mouth near his molars look darker in color and wonder if they are infected as they bleed like a stuck pig if brushed. Mommy is told that he is fine and she just needs to floss in the back a bit better.
May 12, 2009- Brian wakes up from his nap unable to stand. Mommy thought he was grumpy because he had to be woken up to take Ansley to Ballet/Tap. She carried him to the van thinking he was just being difficult because not only did he get woken up, but Mommy was pushing the "going potty in the toilet" and he didn't want to go. Mommy called Daddy on the way to ballet and told him about BB. We agreed he was probably grumpy. Daddy met us at Ballet and took the kids so Mommy could go grocery shopping by herself. Daddy IMMEDIATELY called Mommy and said "COME GET BRIAN NOW!! Something is not right." Since Mommy watches a lot of medical shows and mystery diagnosis, Daddy writes off alot of what Mommy says. Since Daddy said "YES, there is a problem", Mommy flew back to the ballet studio like a mad women calling the pediatrician on the way. Our pediatrician was not able to see us, but a different doctor in the practice saw Brian, who was amazingly steady and able to walk. The pediatrician notices B's fingernail is infected and gives a prescription for an antibiotic and orders to get some blood work done about the muscle weakness. Mommy goes home with Brian, but is still a little disturbed by how Brian acted earlier. A couple of hours after being home Mommy tells Brian to come get PJ's on for bed. He cannot walk down the hall so Mommy carries him. When she goes to sit him down indian style he cannot sit. He falls backwards and his eyes roll around. Mommy thought he was having a seizure and rushes him to the ER. After eight hours in the ER with Xrays, blood work, and several doctors examining Brian and everything coming back normal we head home with "he must have pulled the ligaments in both his hips. Keep him off them a few days and he will be fine."

A couple of days later we follow up with our pediatrician. All seems fine.

May 29, 2009- Olivia has a well baby check up with our pediatrician but all four go along with Mommy. Brian's been on an antibiotic for his "infected fingernail" and nothing is getting better.
Doctor gives us a new prescription for Brian and sets up a recheck for him in a week or so.

June 8, 2009- Brian's recheck gives no change on his fingers and we have been doing Epsom salt soaks, antibiotics and a prescription cream. Mommy starts thinking maybe it is fungal since the appearance of the nail thing corresponds with our new kitten from the animal shelter and two of our other kids have ring worm. The pediatrician refers us to a dermatologist.

June 15, 2009- We see Dermatologist and discuss Brian's nails. She takes some clippings to run tests on and we are on our way with a prescription for a nail thinner.

June 25, 2009- Ansley and William have their shots and Mommy shows our nurse at our pediatrician's office Brian's nails. We think they might be getting a bit better...finally some improvement.

August 10, 2009- Brian's third birthday and well check up with pediatrician. Everything looks good. Doctor makes sure we are following up with the dermatologist about fingernails.

afternoon of Aug 10 Daddy takes Brian to his recheck appointment with Dermatologist. She says that the test results came back negative for fungus and that it must be psoriasis. She said come back for another follow up in three months. Nothing is done for psoriasis for a child that young. You can do laser treatment, but not on such a young child.

July- September Brian is really over-reacting about having his teeth brushed. The last week of August Mommy gets him in a head lock and looks around with a flash light to see what is going on. She sees what she knows to be the root of the tooth. His back right molar has NO gum covering the tooth.

September 2, 2009- Mommy takes B to Dentist to have the tooth looked at. The dentist blew us off and we were in and out in ten minutes. The assistant and Dentist said it was nothing and his mouth looked fine. The assistant said that she could make a referral if I wanted one but she felt everything was fine. KNOWING it was not fine mommy just wanted out of that place and immediately came home and looked up the phone number for the dentist our pediatrician recommended. This dentist would be out of network for our insurance but Mommy knew there was a problem. (at this point thinking only mouth.)

The pediatric dentist did not have any openings until the end of October and we make an appointment for Oct. 29th, but Mommy said "we live around the corner...I am so sure there is problem that if ever you have a no show or a cancellation CALL and we will be there in ten minutes."

September 7, 2009- Brian is sick, throwing up and acting tired sleeping on and off all day. He goes to bed for the entire night at 5:30 PM. None of the other kids get sick.

September 8, 2009- The new dentist's office calls and gets us in because of a cancellation. While we are in the waiting room Mommy calls the pediatrician's office and gets an appointment for Brian to be seen later that afternoon. Mommy didn't have any reason at that point to schedule the appointment other than she had random thoughts from reading stuff on the internet and wanted to talk to the pediatrician. Mommy had been reading about psoriasis and saw that rheumatoid arthritis can sometimes be linked. That made her think of the May ER trip and and she just had questions because now we had mouth issues. What was going on?!

Mommy tells the new Dentist the story of going to our regular dentist and how she KNOWS something is wrong. The dentist takes one look in Brian's mouth and says "you were right to be concerned." It appears as if he has juvenile periodontitis. I told her that I just scheduled an appointment with our regular pediatrician for a few hours later. The dentist showed us how to clean Brian's mouth with a syringe and scheduled for us to come back in a week.

After naps we head to our wonderful pediatrician's office where Mommy just says WHAT IS GOING ON??!!! Mommy told her about the juvenile periodontitis and showed her dry patches on Brian's skin, showed her his fingernails and let her know that Brian's scalp flared back up after a few weeks of not using the prescription shampoo that we have had for ten months. While examining Brian the doctor notices that Brian has a rash around his groin. Mommy said yes that comes and goes and we just put A+D ointment on it.
The pediatrician says she wants to do some blood work, but to let her look up some things in her derm. book to make sure she is getting every possible test run to see if we can link all of this. She let me know that she was not thinking Leukemia because Brian had gained four pounds since she met us ten months ago and was meeting all his markers. However she was concerned about some other auto immune things. She tells us to schedule an appointment with the Dermatologist and lets us know that she will call the Derm. too.

September 10, 2009- Daddy takes Brian to get bloodwork done. He calls Mommy and says, "Did she tell you she was testing for Leukemia?!!" Mommy wasn't too nervous thinking the doctor said she wasn't worried about it.

September 11, 2009- the lab calls back and wants Brian to come back in. They need to draw more blood. They call back a couple hours later to say that the blood work was negative for Leukemia. We are thinking all is OK.

September 15, 2009- Mommy takes Brian to the Dermatologist for a biopsy of one of the lesions from his scalp. Mommy asks her about what does she think is causing this. To which she replies, "I have a few ideas but that's because of what your pediatrician told me." She let us know that the results will be in a week.

September 16, 2009- Mommy takes Brian to dentist for a recheck. They ask how his mouth looks to which Mommy responds," bad". It looks like the left side molar is loosing some gum. When the dentist comes in the room she is very serious and says, "Mom, I would like to talk with you first." She went on to say that she believes there is something systemic going on with Brian. Mommy just looked at the Dentist and said, "I have no idea what you guys are thinking. Our pediatrician says that she just wants to take this one step at a time and do the process of elimination. So, we don't even know what she is thinking. I thought we ruled Leukemia out and all was good.?!" The dentist then says, "the exact wording I got from the blood tests were that his blood did not have the markers for Leukemia, but that his (whatever she said) levels were abnormal." She then went on to say, "I'm going to tell you what we are trying to rule out, but don't go home and google it until all your kids are in bed tonight so you and your husband can have a good cry. We think this is Histiocytosis."
   While at the dentist's office she took a picture of Brian's fingernails. Here it is.

September 17, 2009- Mommy calls the pediatrician's office to say PLEASE LET ME SPEAK TO OUR DOCTOR!!! After reading on the internet about the disease Mommy saw several symptoms that Brian had that we had never mentioned to our doctor because we would have never thought they were part of a greater problem. We just thought they were part of who Brian is.

September 18, 2009- The pediatrician calls Daddy's cell and tells him that even without the biopsy back from the Dermatologist she was pretty certain that Brian has Histio and was going to refer us to a pediatric Hematologist/Oncologist. The specialist would confirm a diagnosis and determine a course of treatment.

September 20, 2009- Our friends (Ricky & Julie Lefils) ask if they can tell their brother in law (Ricky's sister's husband) about Brian. He is a Hematologist/Oncologist here in Pensacola at Sacred Heart. He tells them to give me his number and to give him a call. Mommy gets to chat with him about Brian and get an idea of what things would look like over the next few weeks.

September 21, 2009- Our pediatrician calls and tells us she is referring us to Dr. Chatch (the Lefils' brother in law!) and that we are in great hands. She said he had already called her office requesting stuff on Brian and let her know (because the two doctors know each other well) that we have a personal connection to him and he will be our doctor. (He has two partners.) She tells us that the biopsy came back and Brian does infact have Histiocytosis.

September 22, 2009- our appointment with Dr. Chatch Assanasen. He lets us know that we could spend weeks waiting on schedules and doctors appointment to get test results so to bypass all that he was admitting us the hospital and getting the ball rolling.

September 23, 2009- After an uneventful day and night in the hospital we wake up to start our difficult day of tests. At 10:30 AM we head to get Brian's medi port put in, after that, while still sedated he gets an MRI, then CT scans. Brian stays out of it most of the night as the nurses access his port and do his first round of steriods.

September 24, 2009- Brian gets his IV in his hand removed and gets his first round of chemotherapy and second dose of steriods through his port. He also receives a second "chemo" treatment. This is an antiobiotic drug and is administered once a month. His access to his port is removed and we are discharged with instructions to call if his tempature reaches 100.5. That will require immediate hospitalization. We have a scheduled "road map" of what Brian's treatment plan will look like. For the first six weeks Brian will go to the clinic to receive weekly chemo. At the six week mark we will evualuate where he is. If he has not responded to treatment we will continue weekly and up his doses. If he is responding it can go one of two ways. Either 1. chemo once a week every three weeks for six months or 2. chemo once a week every three weeks for 12 months. IT'S A LONG ROAD!!!!!

It's overwhelming to go down this simple diagnosis path with nothing too alarming, to end up with a three year old in chemotherapy and a big binder from your doctor that says Childhood Cancer. We are blessed that Brian's diagnosis has a great prognosis. If he responds to treatment he should be considered in remission for the rest of his life. We are blessed that the Histiocytosis is considered single system as it has only affected the skin. It has not attacked internal organs or his brain. We are blessed to LIVE in Pensacola. There are other families that don't live here and they are separated as Dad still has to work and siblings are in school. So, Mom lives here maybe in a hotel, (they are building a new Ronald McDonald House on hospital grounds), but can't really do much as chemo treatments are weekly. If ever there is a fever you are hospitalized. There isn't room for have to be by the doctor and hospital. It's a long time for families to be apart. Plus it is a financial burden. We are so blessed to live here and have a support system. Even though some of Brian's meds are not covered by our insurance, for the most part we are sure that we will be covered for the main expenses. Plus we LIVE here, we can all be together through this journey. Ansley is homeschooled so we get precious time together (without bringing home other children's germs) and we don't have to worry about schedules outside of our home other than Brian's treatment. God has prepared us for this through many different things in our past. We trust Him and look to Him to use this difficult time for our good and to bring glory to Himself.