Chemo Feb 16, 2012

Brian had chemo today. He is down to one last treatment. We are thrilled.

Here's a run down of the appointment(s).  

Arrive at Nemours. Get asked to update our information.(Listen people, please go back to your old policy of not asking frequent flyer's to update their insurance, phone number and address at every single visit. Nothing has changed in one week, three weeks, etc.. If you only go to Nemours every year or every ten months or so I get it. It is possible that your visits fall on different calendar years and insurance may have changed. However, if its February 16th and we have already "updated our insurance" three times this calendar year, I think we're good. Let us go up to our floor and not wait to be seen by one of your receptionist.)  :-)

Get to the fifth floor and wait in the Hematology/Oncology waiting room.

Go back for Brian to get his height checked, his weight, his blood pressure and temperature. Plus they ask us questions about his meds and the need for refills, etc.

Wait in the play area or our room for the doctor to come see Brian.

Get seen by the Doctor. Here is Brian with Dr. Evangeline Brown. 

Next we get our slip to head down to the infusion center. Here we are in the waiting room of the infusion center.

Here's a picture of Brian (and Daddy) checking in. Brian has to physically walk up there and check in. He has to get a hospital bracelet. (Which he hates.) This is at the adult infusion center.

Here's the big boy sticking his arm out for his bracelet.

His bracelet to identify him and associate him with the chemo he will be receiving. (There's a long number on the bracelet must match the number on the drugs. Along with the name and date of birth, but the name and DOB alone are no longer sufficient.) I'm all for making sure each child gets the right meds.

While still at the adult infusion center Brian goes back and get weighed. If you glance to your right you can see a long line of recliners separated by hospital curtains. I didn't take a picture because there were several people receiving treatments today.

Then we go back out into the waiting area and out of the infusion center to the lobby of the second floor. We go around a couple of bends and through a hallway to the back entrance of the infusion center. This is the kids side. They have this secret entrance  :) so the children don't have to walk through the adults getting chemo. They said it bothers both the adults and the children to see each other there for the same thing. I understand that.

Then we wait in the Infusion center room. Then the nurse comes in and takes Brian's vital, again. Remember I was tempted to be smart with my answers last time. I don't know why it just cracks me up.

Then we wait for the meds to come down from the pharmacy.

Then Brian gets accessed and receives his chemo. I have no pictures of this from today because it was terrible. Brian sat in Fred's lap and I guess the change threw Brian off because he put up quite a fight. He ended up getting a bloody nose. The entire ordeal was very draining.

After he gets his butterfly removed the kids pick out stickers and we are ready to hit the road.

Here's a picture of Brian with the infusion center ladies. The one on the top right, Janice, was the temporary nurse on the oncology floor since last October. She was there to get to know the kids so they would have a familiar face in the new infusion center. That is something we really appreciate and it helps some. The lady on the bottom right, well I can't remember her name, but we figured out that she was our original nurse in the hospital back in September 2009. (That would be when we went in for our consult and we were admitted to the hospital to get the ball rolling. Our heads were still spinning and trying to comprehend and process what was going on to our newly turned three year old baby .She was there to walk us through. Since we weren't planning on a hospital admittance,  after Brian got settled and we were reassured he wasn't to have surgery that first day I went home to secure childcare for the next few days and gather Brian some special things from home. Our dear friend Julie Z. Lefils was watching the other three kids, but she had to leave to go out of town. So her sweet husband, Ricky, came watched the kids until Dabney arrived from Panama City. --fun fact...our original oncologist, Dr. Chatch, is Ricky's brother in law-- During this time Fred was with Brian at Sacred Heart. The nurse came in and had to get an IV started. She wrapped Brian in a blanket so he couldn't move and got the job done. She told Freddie that he should be thankful that Brian is a fighter rather than just laying there taking it. That stuck with Freddie. It haunted his thoughts. Remember this was the very beginning of our journey.) Well, getting chemo today we made the connection that she recognized us from two and half years ago on the oncology floor of the hospital. She also mentioned that Brian has gotten quite a bit stronger and is a fighter!!! Yes, he is.

We are thankful that Brian has ONE more treatment. We will still go to Nemours every four weeks for Brian's port to be flushed and every six weeks he will need blood work and he will periodically need scans. I don't remember the time table for that. We are praying that Brian will NOT have a re occurrence of symptoms. (Also another side note, apparently I do not understand LCH at all. Brian has bone and skin involvement and that does not equal multi system. Bone and skin are one system. That's great news.)

The Infusion Center

Brian had chemo yesterday. Nemours and Sacred Heart are streamlining the whole chemo infusion thing and working together to create a "simpler" process. It will be better for the children. It only adds another hour to the day. One more medical place to visit. New staff to get comfortable with. The exact same questions and more vitals to take back to back. I was so tempted to have a smart remark when the nurse in the infusion center asked us medical questions about Brian. For example "has he had ________(fill in the blank-nausea, vomiting, fever, muscle weakness, etc.) since he's been seen last." I was sooo tempted to say, "Nope, not in the last 30 minutes." :-) As you can read I have a terrible attitude about the whole thing. I'm sure there is some medical reason that they are doing this, but I come at if from a Mommy's perspective. Plus what we've heard is that this is being done to create a better partnership between Sacred and Nemours. My child HATES chemo and doctors as it is. Routine and predictability are VERY important for Brian. The entire chemo process is difficult because there is so much that is out of Brian's control. He has to be pinned down, physically restrained to access his port. He takes lots of medicine. He has no control. He is not a part of making decisions that are about him and what he goes through. Now, I am not saying our kids have a say in every decision, because they don't. All kids are "forced" to do things they don't want to do at some level. But I am not talking about going to Great Aunt Jane's house to visit distant family members when the kids would rather go to a best friends birthday party. (We don't have a great aunt Jane, just go with me. I am using it as  an example.) Our sweet boy has absolutely no control of major things in his life. It makes the minor things important to him. If he lines his stuffed animals just so, one of his siblings better not come move them. It's extremely important Brian. He will cry and fall apart over someone rearranging his things. Not in a selfish "you touched my stuff" sort of way, but in a "my world is crashing, please, just leave my stuffed animals alone" sort of way. I have talked about his love of tight spaces before. Fred and I pray with and for Brian everyday. We pray that he understands that while everything is out of our control, our loving Heavenly Father has us in His hands. There is nothing that is out of His sovereign hand and He will (and already has) used Brian's illness for our good. Our prayer is that Brian will know that God is love and He cares for Brian.  

Here's Brian getting his vitals taken in the new infusion center. To be accessed and get his chemo administered he sits in my lap and it takes two to three of us to restrain him.

Update on Brian

Brian had chemo two weeks ago. Here are some pictures from his last visit. He's quite a trooper but he still HATES having his port accessed.

 Here is the tray of meds. I especially hate seeing the warnings on the Vinblastine that it is fatal if given intra something or another (given in the spine). Yes, I asked "WHAT DOES THAT MEAN?!!!" Fred reminded me later that we had already had this discussion as I had noticed that before and asked about it. I have absolutely no recollection of that. It's amazing what you block out and don't want to remember.There are a lot of chemo visits that we don't dwell on, we just get through them.

We were in the spider man room. This would be our original room. The one that Dr. Chatch and nurse Jennifer handed us our big "your child has cancer" binder and told us we were going to be admitted to the hospital to have a port put in and then start chemo...right then. I still think of that day every time we are in this room.

   Brian had a skeletal survey today to see if he has any new lesions on his bones and to peek at the one we found on his leg a few months ago. Please pray that there are no surprises and that everything is clear. We will find out the results of these scans next week at Brian's chemo appointment.
       Please be in prayer for Brian's next few chemo appointments as they might be our last. He finishes up the protocol in three more treatments. Then we enter the "watch" time for one year. He will of course have scans and blood work during this time but no chemo. He will also have to have his port flushed every month and he will hate that. But, NO CHEMO!! If he doesn't have a recurrence of systems then he is considered in remission and probably "cured" of his LCH. If he does have a recurrence of symptoms then we start over again with more chemo and a different combination of drugs. We are of course thrilled of the idea of no more chemo, but it is also a little bit stressful to be done with treatment. Brian completed his first round of chemo in April of 2010 and had a recurrence of symptoms within a few months. It was quite a blow to start over. We will not be removing Brian's port this time. We will wait and see how things go before making that decision. Anyway, with almost two and half years of chemo behind us, Brian knows the drill. He thrives on routine and having things exactly the same. We got a letter in the mail today stating that things are changing and Nemours will no longer be giving chemo on the Hem/Onc floor. We will first have our appointment with the physician and then have to go to an infusion center. This adds one more step in the process. It adds one more place to go, more medical staff to get used to and the appointments are then much longer. In our two years we've gone from everything being done in a couple of hours in one room, to having to go to a lab the day before for blood work, then our appointment and now add  an infusion center for chemo. It seems if the focus was really on the children that it shouldn't be this complicated. I will not say anymore about all that because, oh my, I could go off. I don't believe this new procedure is "for the children".
   We really appreciate your prayers and know that they are effective. God protected Brian on our trip to New Mexico during Christmas. It was truly an answer to many, many prayers. The day before we left we thought about canceling the entire trip because Brian had a low grade fever. We took him in to see the doctor and she said, "When his fever hits 100.5 take him to the ER and tell them your son has cancer and you need cultures taken from his port and a round of antibiotics.Then call us." Brian's fever stayed at 99.9 and 100.2 the entire trip, but we never needed an ER visit. Fred and I are extremely grateful for all of you faithful prayer warriors that lift our family and specifically Brian up in prayer. Thank you!!

Update coming soon

Sorry for the long delay. Update coming later this afternoon. Just had to share this cute pic of all four kids.

Mr. Routine

Brian loves his routine and having things done just so. One of his current nighttime routines is popcorn for "dessert" and watching Cars 2. He has even taken to watching it in Spanish.

Here are our sweet boys with their popcorn watching the bonus features on the Cars 2 DVD. They could watch Toy Story Hawaiian Vacation and Tow Mater Car Toons all night long, over and over even though they are just five minutes each.  

Chemo 11-17-11

This week was a chemo week. Wednesday is bloodwork and Thursday is chemo.

Yesterday (Wednesday) was the first time we went to the lab and had to wait an hour to be seen. It was chaotic. The four kids that went before Brian SCREAMED their heads off! So, the little boy that went right before Brian was told by his mother that he may have a toy if he didn't scream. That prompted Brian to turn to me and say, "May I have a toy if I don't scream and cry?"

:) We've learned to stop buying the entire lego sets because really our boys just love the mini figs and creating their own house, car, castle, etc. So Brian's reward for being brave now adays is one of the mini fig packages for $2.50. He doesn't get them every time we go to a doctors appointment but whenever we have surgery, X-rays, etc. It's always exciting to see who the mini fig will be.

Thursday was chemo. It was quick, in and out. Brian is doing well. Here is a picture of the kids infront of Nemours.

Update with Pictures

Fred is back to work after six weeks at home on short term disability. Of the past eleven years and I think he has called in sick once maybe twice so I wasn't too sure how he would do being out for six weeks. I was mighty proud of him because while he did answer the phone and field some work from the house, he did a great job following doctors orders for recuperating.

Here are some images of Fred's back now, after his spinal fusion.

                                  Pretty nifty, eh! (Quite pricey too!)

Brian had another IVIG this week. His counts were so low he needed the immunity boost.

He asked me who was going to watch the kids while we were in the hospital and I told him Ms. Shelley. MAKE ME CRY MY EYES OUT...Brian looked at me sadly and said, "you mean they get to play at Griffin's?! I wish I wasn't the one that always had to go to chemo!"

Yes, rip my heart out and make me sad for him. So, that would be why we purchased Cars 2 secretly the night before and surprised him when he got to the hospital. Wouldn't you know it the oncology wing was full so we were in the regular peds unit and what a disappointment. It's like the difference between staying at the Motel 8 verses the Plaza. Obviously the Pediatric Oncology wing is the much nicer one. So, when we got to our room we discovered the DVD player was broken. Brian ended up watching Cars 2 on Fred's laptop.

Brian is still afraid of the bed so here was his set up for the day.

Fred still had to work so after we got in and settled he left and went back to work. Brian was absolutely silent and when I tried to talk to him he would just say "I don't want to talk right now."
In between his Cars 2 viewings he played with the iPad and made some videos. I over heard him saying "Hi, this is Brian. Here's my Cars 2 movie. I am at Chemo. My Daddy left me. He went in his car. I am all alone."
  Again, rip my heart out. I called Fred who flew up to the hospital in flash and stayed with us the rest of the day. Brian was so happy to see Daddy he even got in the bed with Daddy.
We of course talked to Brian about all the above, but quite honestly we were just thrilled because if you remember Brian used to get so angry at Fred that he wouldn't talk to him. Brian wouldn't even acknowledge Fred talking to him. If Fred said, "I love you Brian." Brian would look away and say, "I love you Mommy." We are way past those days, HALLELUJAH, and Brian is a total Daddy's boy.

(The bear Fred is holding was a gift from the UWF Rugby team. They came around saying hello and giving gifts. They wanted a picture with Brian but B said "NO! That makes me scared.")

Our newest drama is poor Miss Olivia Eden. She and Brian were fighting yesterday and he pulled a scarf she was standing on which caused her to fall on her mouth. She tore the frenulum labii superioris and somehow managed to pull a tooth down and push the gums up. She might have permanently altered her gum line and we are still watching the tooth to see if it is going to die. And oh my goodness the amount of blood!! Drama, Drama, Drama. We should write a book about living with the Schreibers. Never a dull  moment. All this happened after we returned our late library books. They were due the day before but we were unexpectly at the hospital all day. As I am asking the lady how much we owe I see my boys scaling a statue. Yes, the Schreibers are always full of entertainment.

Here is Miss Olivia at the dentist. She was quite fussy and demanded to have my phone to play with and take pictures.

As you see from my picture of Olivia it wasn't worth the scene we would have made so here are Olivia's pictures from the dentist.

The joy at the end of this day was the left over cookie cake that Shelley had made for us the day of Brian's IVIG. Oh my goodness was it wonderful!!! I might have eaten about six pieces...

Update 10-6-11

Alrighty, I have some revisions to make from my last post. I have clearly misunderstood what is going on with Brian and his scans. (Even though I asked a million questions and got a copy of the report to read myself, apparently, I still didn't understand how everything fell down.) I was going to delete my entire last post but sometimes I like to go back and read what we have been through and see how God has carried us through some pretty tough stuff. The emotional parts of thinking one thing and finding out something different from week to week are all a part of the chemo process for us. There are lots of ups, downs and all over the place moments for us. Our pastor has recently preached about how just like the Israelites were told to remember what God has done, we should look back in our lives and see how God has worked. He called us to remember and not forget. Every so often I read our blog because I do tend to forget. 

  Here's what we learned today: Brian had scans done in April of 2010 and those scans gave us the green light to have his port removed and be considered "completed" with treatment. In September 2010 Brian started round two of treatment because of a recurrence. In November of 2010 he had a set of scans (he is suppose to get them every three months) and then a few weeks ago he had some on Sept. 14, 2011. The Sept 2011 set of images are the ones that revealed a lesion on Brian's left femur. Apparently the Radiologist went back and compared them to the April of 2010 images. Those set of images did not reveal anything because that specific angle or rotation (whatever he said) was not included in the April of 2010 images. The November 2010 images were the ones that when the Sept 2011 images were compared they could see that the lesion was there only we didn't see it in Nov. 2010 b/c it was not clear. It is entirely possible that the lesion was there in April 2010, we just don't have an image of that area. However, the Oncologist is saying that we do not know 100% that the lesion is LCH. It's just the assumption that all things point to and it probably is. But, we are not doing a biopsy because the knowledge that the lesion is or is not LCH doesn't change anything in Brian's treatment. The current level of treatment that Brian is receiving is "more" than chemo round one because of his immediate recurrence. So, if Brian were to walk in with a new diagnosis, presenting with LCH Multi System Involvement (what he has) the treatment that he is currently on is what they would do. Being that the lesion was probably there in April of 2010 (and definitely in Nov 2010) Brian's almost immediate recurrence is because he was treated as a single system involvement and was only on chemo for six months rather than a full year. (Six months would be the road map for round one of chemo. Brian was actually at seven months because of missing some treatments b/c of being neutropenic.) Again, I have so many thoughts...probably I should keep a lot of them to myself since I tend to reveal some of my sins and I should work on my patience, etc. but...while the initial thought might be frustration that the doctors "missed it" and we wasted some time, I can totally see God taking care of Brian (and us) from the beginning.

As our doctor reminded us today, some doctors don't even treat for single system. So, even though Brian probably had multi system from the beginning, he was diagnosed and treated for single system and he did respond well. What if we had a doctor that didn't treat single system and we waited several more months before we found out it was actually multi system and all the while LCH is destroying his body?! We didn't have to deal with that. Praise God that Brian was treated immediately and responded well, he probably just needed a year and not six months. Secondly, we were so emotional and upset about chemo round one as it was. I cannot imagine the blow it would have been to hear ONE YEAR from the beginning. I might have jumped off the roof of the hospital. (Not really, that was for Mrs. Julie W., our dear friend. She will "get it".) But seriously, six months seemed long, but I could swallow that. A year would have been paralyzing and depressing to hear. We were still accepting Brian's diagnosis. Remember we went from several "common" ailments to sitting in a Pediatric Oncology office being handed a large binder that says Your Child has Cancer. I wanted to throw the binder back at the doctor and nurse and scream "we don't need this!!" scoop up Brian and run out of the building. I see how God has lovingly guided us through our journey. HE continues to do so. I am also thankful that we have a doctor that doesn't see the need to put Brian through a biopsy just because. He acknowledged the results will not change the process, so why put Brian through it. We appreciate that.  

Please continue to pray for Brian and our family as we continue with treatment. We have chemo every three weeks followed by five days of steroids through March 2012.

Here we are at chemo today.

Waiting in the waiting room.

                                                        Checking his height.

                                                  

                                                          His weight.

                                        His blood pressure.

                                         His temperature.

Getting the Lidocaine wiped off his port before being accessed.

                            
                                      The tray of meds.

                                    

Brian did great today. I forgot to go by Chick Fil A and get  him a lemonade so he had to deal with the taste of the meds without his drink. :-( I will remember next time!!

Cute boy!!

We are home and Brian is napping. He's such a trooper.


Things that make me smile...
   I came around the corner into the boys room to be greeted by all these guys. It made me smile.

Update 9-27

Thank you all for your prayers during the last couple of weeks. Your calls and e-mails letting us know you love us and are praying for us are such an encouragement. Fred is doing well. His surgery was suppose to be two hours but it ended up being close to four. As the doctor told me "everything was  mess in there." Because of all the scar tissue and herniated disc that was "all over" the doctor said that there ended up being a tear in the dura, but he stitched up the dural tear real tight before there was any leaking cerebral spinal fluid. Because of the tear Fred had to either lay flat or stand up straight, no sitting for the first couple of days. Even so, it was a huge praise that there were no complications and no leakage of fluid b/c of the tear. It could have been a real set back.
  Fred is continuing to do well, he has a back brace that he wears when he gets up for more than a trip to the bathroom and he stays in bed most of the rest of the day getting up only to walk around the house for his exercise. Yesterday we took a quick outing to the christian book store and Barnes and Noble to look for Fred an audio book. But the 30 min excursion was too much and we realized he isn't quite up to all that yet.
  And on to Brian... His scan results from last week revealed that he has a lesion on his left femur. That changes his diagnosis from single system to multisystem. We do not know what this means as far as treatment as we have not met with the oncologist and don't until next week. What we did find out was that the lesion was there in April of 2010. The radiologist went back and looked at Brian's old scans from April of 2010 and saw why he missed the lesion. Apparently the image was not clear because Brian didn't sit still. Now, having the new images from last week, Sept 14 2011, and going back to compare to the April 2010 he was able to recognize and make out the lesion and determined that it is not new, it has been there and it has not changed in size. So many thoughts go through my mind when I hear that. Number one, honestly, a bit of frustration that they didn't get a good image in April of '10. If you remember those are the scans that helped make the determination that Brian was "good to go" and cleared to have his port removed after completing his first round of chemo. If you didn't get a good image, do it a second time!!!! Anyway, thought number two is "well, that explains why the almost immediate reccurrence. We never dealt with the disease complelety. It didn't 'come back' it was never gone." Thought number three would be that praise the Lord the lesion has not grown or spread in the last year and a half. That's a good sign.
  We will keep you updated as we learn more and move forward with Brian's treatment. Thank you for your continued prayers and love for our family.
 On a totally random side note, I have always like medical shows and the like. A month ago or so I was watching some of my episodes of Mystery Diagnosis that were recorded on my DVR. There is an episode titled The Lady that Saw Pink (Season 7 episode 8 originally aired Aug 17, 2009). One of the story's from that episode highlights a case of a little girl with LCH. I cannot even begin to describe to you what I was thinking and feeling as I watched a TV show called MYSTERY DIAGNOSIS that featured my child's illness. If you look it up and find it airing soon you should watch it. It really explains Brian's illness well.

More Surgery (not for Brian)

Brian had a complete skeletal survey or scan on Wednesday along with his bloodwork for chemo the next day (The scan/survey are different and I always forget which one is which. I'm not sure which one he had.). The next day (Thursday, yesterday) at chemo we got the results of the skeletal survey/scan and received his chemo. As always after chemo, he is now on steroids for the next five days. While the appointment was not bad, it wasn't all that reassuring. There were some findings from the scan, but we are still letting all of that sit with us for a few days. I'll blog about that later, but today we are up early and headed to the hospital for Fred a spinal fusion. Fred will be having his third back surgery this AM and he is thrilled to be getting a fusion. On Wednesday, his birthday, he had his pre op appointment and he has been trying to finish up some loose ends at work before being out for a while.Throw in a school day for me and the kids, ballet and guitar lessons, me getting sick and you can see it's been a busy week. We are very grateful that God in His good providence, love and mercy had already laid the plans for this week. Fred's mom is here to celebrate Fred's birthday. Fred's surgery, not scheduled for another week, got moved up on Tuesday to this week. With her here we have not had to worry about our children (or me making meals.)  It's been wonderful!!

Pray for Brian

Our little Brian is really thinking about chemo and all he goes through. We've recently had a dear friend diagnosed with Cancer. We've had lots of conversations and prayers about cancer, chemo, doctors visits and death in our house lately. Brian's sweet little heart is sad that our dear friend would possibly have to go through chemo. He says things like, "Let's pray that Ms. ******* doesn't have to do chemo. I don't like it. I don't want her to do it and I don't want to do it either." Every single night he prays that when he is six he will not have to have chemo. It is really sad, because he used to pray for "when I am five" and now that he is five he knows he still has chemo every three weeks through next March. So, every evening for his prayer request he will say "I know I will probably have to always have my port and a butterfly, but I want to pray that maybe when I am six I don't have to to do chemo anymore."

Please pray for our Brian Robert and that he would be through with all of this in March. Here's how it works: We complete his roadmap for treatment and then watch Brian for a year. (still frequently having scans and his port flushed during that year, but no chemo) If Brian does not have a recurrence of symptoms then he is considered in remission and treated. If he has a recurrence then we start a new round of drugs to try and find the combination of drugs that work of him.
       That is what we are doing right now.As you remember Brian started chemo in Sept 09 and finished in April of 10. Unfortunately he started showing symptoms in July/Aug '10 and had a biopsy in Sept '10 that confirmed LCH and that we "hadn't gotten it." That is when we started chemo round two and mixed up the meds to try a new combination. After his induction period of the first six weeks (which includes weekly chemo and daily steroids) we switched to to new drugs in Dec 10. However, before we were able to start the new drugs Brian had three weeks of nothing because his counts were too low for chemo. During this time he started presenting symptoms again. From Dec'10- March'11 his symptoms didn't go away and we felt the new drugs he was on were not sufficient. The doctor said that the drugs Brian was taking weren't working b/c they are for Leukemia patients in remission, Brian started taking them while he had symptoms. So, we went back to our original chemo drugs/steroid combo with a modified induction period (4 weeks of weekly instead of six) and changed the steroid back to his original one that has less negative side effects. We know this combination of drugs works for Brian's symptoms, but idea is that we would give him a year on the drugs rather than six months. Maybe this will "get it". So, we go to the hospital every three weeks, on Tuesday for bloodwork and Wednesday for chemo through March '12. Then we wait and see how Brian's body is doing. If he has clear scans and is not presenting symptoms for one year (from March '12-March '13) than we are done!!! Please pray that this would be it and we are finished with treatment in March. We know that God is faithful and HE will sustain us and give us the grace to walk through anything, but the cry of our hearts is that we be finished with chemo. Please pray with us for little Brian Robert.

Aug 25 Update

We had chemo today and got to see Dr. Schwartz, our doctor that we've seen the most of since our original doctor moved to Texas. Dr. Schwartz was the one that mentioned he wanted to keep an eye on some suspicious lesions on Brian's skin. Then we didn't get to see him for about four or five visits. Since our visits are three weeks apart it has been a very long time since we've seen Dr. Schwartz. Anyway, today he said the lesions look the same as he remembers and that is a good sign. For right now we are thinking that everything is going well with Brian's treatment. Brian is super brave on treatment days and takes his medicine with minimal resistance. We are very proud of our big boy. We got an order to get a skeletal survey or bone scan. I can't remember which. We will update after we do that and get results. Thank you for continuing to pray for our family.

BRIAN IS FIVE

Brain turned FIVE years old today. He is such a sweet boy. We had a great time celebrating Brian in our home with some "boy" friends.

chemo 8-3-11

We are at chemo today. The entire gang came along. Brian is doing well other than he is getting a little cold and sniffles.

Frustrations

There is never a dull moment with our relationship with Nemours. :) This week we will have been there three days in a row! On Tuesday William had an appointment with Cardiology for an Echo. He has a heart murmur and our current pediatrician (we've been with her for nearly three years) had never heard it before. I assured her what we were told when William was an infant that it was an innocent murmur. We even had his heart looked at and all four chambers were present and functioning properly. Since she had never heard the murmur and his heart has not been looked at other than in utero she wanted to make sure for herself and scheduled an echo. We were not worried at all. In fact I didn't even tell most of my family because I didn't want anyone to make a big deal of it. (My mother is going to kill me when she reads this! Love you, Mom. :)) When I say that we didn't make a big deal of it, I didn't even tell William he had to do it until the day before and I didn't hire a babysitter. Brian had to go to the hospital on Tuesday anyway for bloodwork. As predicted William's Echo was super fast and easy. The kids watched Diego while the tech performed the ultrasound. When we were finished with Cardiology we went down to the lab and had Brian's blood drawn for his counts/labs for chemo the next day. We got to Nemours at 8:45 and we were walking to our van ready to leave at 9:55. Easy, peasy. The only drama of the day was William needing Daddy to overly reassure him about how brave he was at his appointment. Again, he is just looking to make sure we give him the same level of attention that we give Brian. Fred's boss has been in town this week and we knew that Fred would not be able to go to both appointments, so he didn't go to William's. We didn't tell William that Daddy chose chemo over an uneventful 25 min. Echo. William would not understand. We just told William that Daddy's boss wouldn't let him come, but Daddy wanted to be there. We try to accommodate and reassure knowing that Brian being on chemo affects all the kids. But, I drew the line at William acting like it hurt and he was still in pain later that evening when recounting the days events to Daddy. When I told William that he was telling a story, that it didn't hurt and in fact he had already told me the worst part was he didn't like the gel, he got a sheepish grin and admitted that he was exaggerating for some attention. We smothered him with hugs and tickles and all was OK. I just like to keep a record for our family of how there is a ripple effect, it's not just Brian.
   So, Wednesday we get to chemo at 10:30 only to find out that our appointment was actually at 10:00. That has not happened, at all, in our almost two year relationship with Nemours. And we have FREQUENT appointments. You would think that they would let that miscommunication on appointment time slide because there have been plenty of times we have had to wait upwards of an hour on them. Plus, it wasn't like we were running late to an appointment and didn't call. We thought our appointment was at 10:30. You would think it would be no be deal. NOPE. The lady at the desk in the lobby said that the oncology floor instructed us to come back at 1:00 because we missed our appointment and the doctor said he wouldn't see us now. You can imagine that our blood pressure increased rapidly. Remember that Fred's boss was in town. He couldn't come back at one, and our helper for the other three kids was available in the morning, as scheduled, and not later at one. Also, Brian already had his numbing cream on his port. That in itself is a big deal. The poor boy HATES getting it put on. We grease him up with Lidocaine then put Glad Press'n Seal over the cream. When he has press'n seal on he will not use his right arm. He acts paralyzed. Brian will probably always hate press n seal and will probably not allow his future wife to have it in their house. Anyway, I digress. It was a big deal that they were turning us away. Fred called up to the fifth floor and talked to the receptionist (instead of relaying messages through the lobby receptionist like we had been doing). The explanation she gave was that there would not be a nurse there to take care of Brian. That didn't add up because we were suppose to be there during that time anyway. Was he not going to have someone looking after him today anyway?! Brian's infusion takes a little over an hour. We were thirty minutes late.
    She told us to come up to the fifth floor and we could talk to the doctor, but that they would not give Brian his chemo. When we got to the fifth floor we had calmed down and bit and we were praying that Fred would be able to communicate effectively without loosing his cool. Our regular nurse checked Brian in doing his height, weight, blood pressure, temperature, etc and Fred struck up a conversation about us being told we couldn't have chemo until one because we missed our appointment. She very calmly stated that the nursing staff had a mandatory off site meeting at noon and had to have the floor cleared by 11:30 so they could leave and make it to the meeting on time. Both Fred and I looked at each other and said, "Why on earth weren't we told that in the first place!! That makes total sense and is different than being "punished" for missing an appointment because of a mix up over time." Even the nurse was a bit disturbed by the unnecessary drama.
    All that to say that we were back at Nemours this AM for chemo. The entire family went and Brian did great. Three days in a row at Nemours...

Here are the kids in front of Nemours on Tuesday before William's Echo and Brian's bloodwork.

Brian playing in the train in the cardiology waiting area. He used to ask to play on the train, but they do not have one in the oncology waiting area.

Cute Kids

Some Pics

BEWARE. LOTS OF PICTURES. Grandmas and Aunts will love it.  :-)

Last week was a chemo week. It was also William's sixth birthday which includes a well child check up at the pediatrician. I didn't do a good job scheduling these two doctor visits on the same day as I only had enough time to make it from one appointment to the other. Since I wanted to ask our Pediatrician a question about Olivia's eyes, Livi had to come along too. That meant I would be getting a baby sitter for just Ansley, the seven year old. I wasn't going to do that, so all four kids went to chemo this week. It was quite an adventure. (Typically they discourage siblings coming to chemo. For obvious reasons like germs, crowd control and noise.)

 Since we were at the clinic during lunch time the floor was empty and quiet, except for our gang and a couple nurses. After Brian was accessed (Which was a lot more difficult than normal. We had to restrain him and he screamed and cried.) we went out to the play room and attempted to turn the play station on for the boys.

We couldn't figure it out and there was no one around to help.

The kids were loosing patience.

We moved on to checking out the book shelf.

We ended up watching a VHS of Air Bud in the small examination room. The kids couldn't have cared less about the movie. After the initial "Hey, that looks like Eva!" no one cared about the movie. We are thankful for iPads, Blackberry's and Droid cell phones. I am not sure Brian would be able to make it through a chemo appointment without Angry Birds. Notice his Angry Birds stuffed animal a couple of pictures up. William got a blue one from Aunt Jess and Uncle Matt for his birthday and Brian got a yellow one just because. I also made a trip to Walgreens before William's appointment and let each child pick out candy of their choice. IF they obeyed for W's appointment they got their candy. Some call it bribery, I call it incentive. :) I believe Olivia is on her second or third sucker of the day in this picture.

 Please pray for Brian. He is starting to put together that his 5th birthday is right around the corner and chemo will NOT be ending anytime soon. He's been praying for months that he would have "no more chemo when I am five".

  Brian also has some bumps on his skin that look suspicious. They look very similar to the ones on his scalp that he has had at diagnosis and recurrence. We haven't been able to see Brian's regular doctor the last two visits and will not get to see him in a couple of weeks. SO, in five weeks we are hoping to see his regular oncologist and discuss the possibility of a biopsy to figure out if they are LCH or not. If he is getting these growths while on treatment it is a bad sign. We would have to mix his treatment plan up a bit. Please just be in prayer for little Brian and that the bumps will go away!

Grandma Schreiber sent the boys their birthday presents. Since mommy suspected what they would be there was no way we were going to let William open his and then tell Brian he had to wait six weeks and *smile* maybe you'll get some too. I know some parents would say that kids need to learn that their sibling's birthday is not about them, but that is not what this was about. If you don't have a kid on chemo you can try to imagine, but you can't just understand the emotional ups and downs he goes through. He's not like a regular four year old. The things he thinks about, that he's afraid of, and what he can do are just not the same. In fact, we had William's birthday party at a swim park. We had a three hour session with slides, fountains of water shooting up and three different pools. Our three other kids were loving every fun filled minute and did not want to leave. Brian spent the last hour sitting at the picnic table with Daddy because he was tired and ready to go home. There are some things that we just don't put our sweet Brian through. Making him wait six weeks for sheets that he wanted while watching his brother snuggle up in them was NOT something we were going to do.

William and Brian were SUPER excited about their Star Wars sheets. Thank you, Grandpa and Grandma.

This picture is for Pastor Clif. Brian is listening to your sermons. We went to Panama City last weekend and Brian found a stack of bricks in Bigdaddy's back yard. He started picking them up and moving them over by the fence, stacking them up. When I asked him what he was doing he replied, "rebuilding the wall. Like Nehemiah." I was super proud and ran in to get my phone to take a picture. Brian might be the cutest almost five year old in the world!!!