Go here, go there....a few places to go today.....

Well today was a, several places to go challenge day.  We started our day off with blood work at 915am at Sacred Heart in Pace.  We had a different person take Kohlton’s blood today.  Let’s just say he is not a professional at his job.  He didn’t say but maybe three words to us and those were “Come on back” that’s it.  He put the needle in and started moving it around side to side to find a vein, instead of finding a vein and then sticking it, not to mention he held Kohlton’s arm like he was about to break his elbow in half.  He obviously does not know how to work with little ones.  Kohlton screamed the entire time.  It was worse than last week.  Mrs. Bonnie will now have a standing appointment with us on Mondays.  Hopefully she does not take one off.  I know, I know she has a life too, I can’t expect her to not take time off.  After that we headed home for a bit before our chemo appointment.  At around 140pm we get to our oncologist appointment and Dr. Brown said Kohlton is doing great!  His blood counts look great and he does too!  Yay for good news!  She did send us to the surgery floor to have Kohlton’s incision from the biopsy looked at since he keeps bumping it.  So we went down to the surgery area.  There they shaved his head a little more, cleaned the area, and sutured it up.  He finally has a bandage that feels sterile.  They sent us home with plenty of stuff for cleaning and for bandaging it up in the future, if it happens again.  We have to keep a close eye on it to make sure it does not get infected.  On to the infusion floor we went.  This floor has just started working with children so I’m going to say that is why the first lady we saw was not nice.  While we checked in, Kohlton grabbed the glass window and shut it.  I thought this lady was going to smack my child in the face.  She was so rude.  I looked at my sister, Kacey, who went with us and made sure the lady knew I did not like that.  I could not believe it.  Any two and a half year old would have done that.  On one of the last post I had told you guys about the infusion center having a separate area for the children.  Well, they do but you have to weigh in at the adult center and check in there as well.  We went back to the children side where Kohlton was to get his chemo and for us be on our way. (It usually takes about 5-10 minutes.)  With this new system they are trying to do, it took an hour and a half.  We sat in the room for about an hour before they even did anything.  It was ridiculous.  We were all tired.  Kohlton had a new nurse doing the access and chemo.  I know they say that children will get used to it but I don’t see how Kohlton could especially with all these changes.  And with how his mommy or daddy has to hold him to get it done.  The nurse tells me how to hold him.  It is so hard to hold him down and him know it has to be done and that I don’t want him to hurt. I think having the parent hold the child down is beyond cruel to both the parent and child.  Once we got home and changed his clothes he started screaming “no mommy, no hurt”.  I started to cry, he thought I was going to make them do it again.   Back to chemo, he screamed almost the entire time.  Kacey got him calmed down by showing him a book on trucks.  She was great at it.  Being home now is great.  Along with the different places being added and more appointments being made we found out with these changes come financial changes as well.  We used to go to Nemours and because they did the treatment there, there was no copay owed.  Now we have to pay weekly, $40 copay to Nemours and once the infusion center gets straightened out, it could be between $40-$100.  That’s anywhere from $80-$140 a week. I asked to talk to the social worker (I was told she could find a grant or something to help with those amounts.)  After talking with the social worker, we now know that since they have not distinguished whether Langerhans Cell Histiocytosis is cancer or an auto immune disease, (even though chemo, steroids, and sometimes radiation is the only thing that kills it) no grants are available.  Even though we see an oncologist weekly and Kohlton gets chemo weekly, it is not 100% labeled as cancer in the medical dictionary, or whatever you call it.  It grows like cancer, looks like cancer, and the only way to kill it is to treat it as cancer, NO GRANTS!  So this parent is NOT happy with these changes.  Tommy and I will do whatever it takes for Kohlton to get his treatments.  I’m not telling you guys this for handouts.  I am telling you all this so you know what we are going through and will go through.  That is the point of this blog, for me to update you all on Kohlton and for me to get relief from this entire situation.  It helps for me to type all of this.  I am going to stay positive and pray that everything will work out!  I want you all to know we appreciate everything you do for us.  Please keep the prayers coming.  Kohlton is playing like he always has!  The prayers are working!  Thank you all!  Next week we will have blood work Monday AM, doc appointment at 1pm, and the infusion center right after.  I will also find out more on his future treatments and scans to see how the chemo is doing.  I will try to keep you all posted through the week.  Thank you all again!  Please keep praying!

KOHLTON'S OK, we had our first E.R. visit.......

At about 230ish, we had our first big scare since Kohlton started chemo.  Tommy heated some food up, and made Kohlton a hot dog, with some chips, and his juice cup, and I was making an egg sandwich for myself.  Kohlton looked at me grabbed his head and said “Momma hurt”.  I looked at him and there was blood all over the floor.  It looked as if it were just pouring out of his incision, where one of the biopsies were done.  Tommy grabbed something to put pressure on his head while I grabbed a towel, honestly I can’t even remember how it all went.  All I remember is running with Kohlton to the car and Tommy chasing me with the keys.  I headed to Sacred Heart while Tommy stayed here with Kason and called a friend to ride with me so that I could put pressure on Kohlton’s head.  I ended up driving straight to Sacred.  Let me just tell you, if you see someone with their emergency lights on honking at you….MOVE THE CRAP OUT OF THE WAY!!  Seriously, get off you flipping phone and move!  I could not even tell you how many people didn’t even notice or care to move.  As soon as I got to Sacred, they took Kohlton and I in a room by ourselves so that Kohlton would not be around sick people.  I think it was strictly for chemo patients or at least for people with low immune systems.  Kohlton’s Uncle Jur-rell showed up to help till Tommy could get there.  Tommy had to get Kason watched and get someone to cover his on-call shift at work.  Once we got to our room in the pediatric emergency room, the resident pediatrician came to talk to us.  She basically had no clue what she was talking about.  Jarrell and I had to keep correcting her.  (The place Kohlton hit was were the biopsy on his head was, they were able to remove the tumor there and Dr. Lewis, the pediatric surgeon said the tumor had eaten some of the skull.  She said the hole was about the size of a quarter.)  The resident in the ER was telling us that there is no hole and after we argued with her, she then told us she saw the scans and there is no hole.  So, in a polite way I told her the oncologist/surgeon must be wrong then.   She also said they were going to treat him like a regular kid meaning  just stitch it up and send him on his way, is how she put it.  She also looked at the cut, pressed on it and guess what, it started pouring out blood again.  Uncle Jur-rell stepped in at this point and made her do her job.  I was about to go off on her.  I was NOT going to let her touch my child again!  She acted as if it were nothing.   I think she started to panic.  She called the oncologist and surgeon, then came back to tell us about the x-rays ordered for him.  Finally, something was being done.  The x-rays were traumatic enough, I won’t even go in detail about those.  Dr. Wack, the real doctor, came in later to let us know that Kohlton’s scans were okay and that he was going to clean the wound and stitch it up.  Once cleaning it, we figured what happened was the glue from the biopsy must have gotten stuck on part of the kitchen table and the table ripped it off.  Awful! Needless to say our table will be gone soon.   They didn’t have to stitch it or anything but we have to keep an eye on it.  It started to clot and form a scab before we left.  It’s a tiny part of the incision that basically got yanked.  Tommy showed up a little before we left, Kohlton was so excited to see him!  With all that blood and a trip to the hospital, I am glad to be home.  Kohlton is acting as if nothing happened and is eating everything in sight still.  Both Tommy and my nerves are shot!  I’m sure I’ll be up all night checking on Kohlton.  Thanks for all the prayers and please keep them coming.

Thought we had a routine starting. . .

Since we have been home we have been working towards a routine.  The doctors said routine is what Kohlton is going to need.  At home our routine is pretty much settled but on Mondays the chemo days, we thought we had that down as well.  On Friday the Nemours clinic called to change Kohlton’s appointment on Monday.  The new plan was we would go to Sacred Heart in Pace and have blood work and then go to the Nemours clinic for chemo in the afternoon.  The reason we have to do it in two visits now is because they need Kohlton’s blood count before they can give him his chemo.  So, Monday morning starts and we head straight to get the blood work.  Kohlton and I get there at 915 am and the office cannot find the orders for his blood work.  I was told to have it done before ten, and to not wait in the waiting room, the office would take him right back because of him being a chemo patient.  At about 930 am the lady finds the paperwork.  I was getting a little aggravated with us sitting there for about 15 minutes when we aren’t supposed to be in any waiting rooms.  We finally get to the lab area and guess what, had to wait in the waiting room.  Mrs. Bonnie takes us back and basically does an IV that has this syringe on the other side to get his blood.  This broke my heart!  Kohlton was crying hysterically.  How could he not, some strange lady was sticking him with this needle and his mommy is holding him down to let her hurt him.  It was awful.  Mrs. Bonnie finished what she needed to do and he was a trooper.  He even said, “thank you Mrs. Bonnie” and with tears coming down his face.  Mrs. Bonnie started to tear up.  All I could think was I have such an amazingly sweet boy!  Once we were done there we headed to McDonalds to get him some pancakes, to take home.  I had to, I felt so guilty.  We got home and he ate like crazy.  We got to play at home till around 245pm, then we had to head to the Nemours Clinic for checkup and chemo.  I gave him his meds and we headed out.  While we went to the Nemours clinic, Kristie, one of my sisters had to take Kason to get his checkup and immunizations, which is very important to make sure no live immunizations.  She did a great job.  Kohlton and I met Tommy at the clinic.  Kohlton did great for the appointment, even when Dr. Brown came in and had to check him out.  Tommy was on call for his work so he wasn’t able to stay the whole appointment, which broke Tommy’s heart.   After Tommy left, Mrs. Jennifer, his regular nurse came in to give him his chemo.    Kohlton loves her!  I think he’s going to have a thing for blondes.   Ha ha.  It took Mrs. Jennifer about 5-10 minutes to access his port and give him his chemo.  Again, I had to hold him down and hear him scream.  I don’t think I’m going to be good at that.  Even though he cried when Mrs. Jennifer had to access his port, he did great.  Mrs. Jennifer even gave him a book and teddy for being such a good boy.  He talked about his goodies the whole way home.  When we were leaving Nemours, we found out there is another change to our schedule.  From now on, Mondays will have three places to visit.  On the 16^th, it was just the Nemours Clinic, on the 23^rd it was Sacred in Pace and Nemours, and now on the 30^th it will be Sacred in Pace, Nemours, and now the infusion center.  I think this is a little too much for him but I have to trust that the doctors are doing what is needed for Kohlton.  Hopefully this will be the last time the appointments change.  I hope Kohlton will get the same person every time we go to these places, Mrs. Bonnie at Sacred, Mrs. Jennifer at Nemours, and hopefully the same person at the infusion center.  I know he liked Mrs. Bonnie and Mrs. Jennifer, they were great with him.  I'd like for him to have a familiar face so he could feel somewhat at ease, if that makes any sense?  All in all Kohlton is still responding good to chemo.  We are so thankful for all the prayers.  Please keep them coming!  Please know the prayers are helping all of us!  Thank you all again!

And it begins....

Monday January 16^th, we had our second chemo treatment. It was our first time to the Nemours Clinic at Sacred Heart in Pensacola. It was very trying for all of us. They had to re-access his mediport, while Tommy and I held him down. It was awful hearing him scream and cry, while we held him down for the nurses to do what they needed to do. We had to get blood work done in the am and then come back in the afternoon for chemo. The doctor wanted to see his blood counts before giving Kohlton the chemo. In the afternoon we returned to get the second dose of his chemo, Vinblastine. It went as smooth as it could have for his first visit there. So far the only side effects Kohlton has had, is diarrhea the first two days after chemo, the chills and the sweats.  Tommy and I are very thankful that those are the only side effects he has had.  Kohlton has done great the rest of the week so far.  He has been a little clingy but still his usual self.  He is a happy two year old who loves to watch Mickey Mouse and play outside.  We also picked his helmet up.  Where his tumors are on his skull, the LCH has eaten the skull, therefor he will need a helmet until the bone regrows.  He is so handsome in it! 
Tommy and I are back to work.  Tommy is back full time and I am working two days a week and every other Saturday.  Kohlton and Kason both can not be in daycare because of the risks to Kohlton's immune system.  An in home daycare will have different germs than our house, so the best case is to have someone here watching them.  Our family is lucky to find an amazing lady to watch Kohlton and Kason while we are at work. Her name is Victoria and she is absolutely amazing with our boys. We could not ask for a better person to watch our babies at our house.  We are very blessed she is watching them and only wish it could be for the full year.  She will be moving once she is done with school, so we will need to find someone who can watch our boys here.  So, if anyone knows of anyone please let us know.  There are several things they would have to do/watch for, for Kohlton so it's not just a babysitting job. 
To all of you, our family really appreciates all the prayers and hope you continue to send them our way.  We are definitely feeling the prayers!  I know I am seeing them heal and keep Kohlton strong,  I am feeling them give me strength, I know God is healing our little boy and keeping Kason tough thru this as well.  Kohlton and Kason are both troopers.  I know its difficult for both boys.  Please keep the prayers coming and I will try to update more through this long journey we'll be on. 


A big shout out to everyone who has helped us out by bring us meals, diapers, wipes, formula, and helping us with so much more.  We truely are blessed to have all of you in our lives!!

The finding out. . .

I will try to remember everything but it was a tough week, so if I forget something I am sorry.  Ok here we go. . . .On October 18^th 2010 Kohlton had to have a minor ear surgery, we noticed then that he had a bump on the back upper part of his head.  I took him to the doctor, I was told it was just a hematoma and it would go away.  The end of November the bump was still there so I took him in again to the same pediatrician; we were told again it’s just a hematoma.  On December 7^th, we noticed a bump on the top, left side of his forehead.  At this time Tommy was in the process of changing jobs, so we had no insurance.  I wanted to get Kohlton seen and did NOT want to go to the same pediatrician.  We were told about a pediatrician in Milton, Dr. Ghiglino, he is amazing!  On December 12th we went to visit Dr. Ghiglino for the first time.  Dr. G looked at the bumps and gave two prescriptions one for some blood work and another for a MRI to be done when our insurance started.  As long as the bump did not change and Kohlton was not lethargic we were ok till January 1^st when insurance started.  Well, January 1^st came and we went straight to the emergency room.  The bump had moved to his eye and was making his eye swollen, it was almost shut.  The doctor at the ER said there was nothing she could do and for us to follow up with Dr. G the next day.  On Tuesday, January 3^rd when the office opened back up from the holidays, we went to see Dr. G, he measured the bumps and told me we would have to do surgery and I would be hearing from him on when to do the blood work and MRI.  About an hour after I left, we were at our friends to eat lunch and for me to soak the surgery in, Dr. G called and told me he had just talked to Dr. Brown and that she would like to admit Kohlton immediately.  My friend Laurie went with me to get everything Kason (my youngest) would need for someone to watch him and everything Kohlton would need for the hospital.  Jarrell, Laurie’s husband was trying to get a hold of Tommy and tell him over the phone about all of this while Laurie and I were getting everything and heading up to Sacred Heart Hospital.  We met my uncle-in-law at Dr. G’s office to drop Kason off with him and to get the admission papers for Kohlton.  On the way to the hospital Laurie and I peeked at the admission papers.  On those it listed suspected sarcoma, I at the time had no idea what that was.  Once we got to the hospital we went right back to his room, they had everything ready for us.  Kohlton had an IV put in almost immediately.  This is when I met Dr. Parmley, as he introduced himself as the oncologist on his case, my heart sank and I almost lost it.  Dr. Parmley examined Kohlton and ordered several scans/x-rays/and blood work to be done asap.   That night after Laurie went home, Tommy and I were numb.  The resident pediatrician on duty came by and told us there were three tumors on his skull but because she was a pediatrician she couldn’t really answer any of our questions.  We started looking up sarcomas on Google, FYI BAD IDEA!  We then made a pact not to look on Google, for anything.  That was one of the worse nights of our lives, to find out Kohlton might have a sarcoma, to three sarcomas, to I’m sorry I don’t know any of those answers, it was torture.  Tommy and I just sat up all night staring at Kohlton.  Tommy eventually got up to call our Pastor at our church to start the prayers.  The next day, Wednesday January 4^th, Kohlton had to be sedated to do a CT scan and an MRI to determine where it had spread.  We had so many friends and family show up to show their support while we sat and waited for Kohlton to be brought back to the room.  Later that night we found out it, whatever it is at this point, was not in the chest area, however Kohlton had aspirated during sedation.  So the doctors and nurses were on high alert for any signs of infection.  We were told we needed to do a biopsy and a nuclear bone scan to determine what it was and were else it might be.  We were also told that the tumors were either neuroblastoma or histiocytosis.  We stuck to our pact and did not look these up.  All I could think at this time was please God do not let it be neuroblastoma, my mom passed away from a medullablastoma and I figured any blastoma was really bad news.  On Thursday January 5^th, Kohlton was sedated to do a biopsy on the tumor towards the back of his head and at this time they decided to do a bone marrow biopsy instead of the nuclear bone scan.  We later found out that from the look of the biopsy it looked to be histiocytosis but it was not 100% confirmed, meaning the pathologist was not completely finished doing what he needed to determine it.  So we got some news that night.  It was kind of a relief knowing it was not the blastoma, but still very scary.  On Friday January 6^th, Kohlton was sedated to do a full body x-ray, a nuclear bone scan and to put his mediport in for future chemotherapy treatments.  That night we found out Kohlton had two lesions, one on each femur.  We also found out that it was for sure Langerhans Cell Histiocytosis, also known as LCH.  We never wanted either of our children to have any form of cancer but knowing that it was for sure LCH was almost relieving.  Tommy and I knowing that it was one of the more treatable types felt relieved.  We were told chemotherapy would start Monday.  On Saturday and Sunday, January 7^th and 8^th we had some other scans that did not require sedation, but little was done because of the weekend.  Kohlton started some antibiotics because of a fever. On Monday January 9^th, Kohlton had to be sedated for x-rays of his temporal bones, because of his ear surgery in October.  They needed to make sure what was in/around the temporal bone to determine the chemotherapy they would use.  Later that night we started Vinblastin, his chemo.  We also started his steroid, prednisolone, and his antacid prevacid.  Kohlton that night acted as if nothing had happened.  He had some diarrhea that night but other than that he was up and playing.  He had his favorite meal that night, pizza and chocolate milk.  On Tuesday January 10^th, Dr. Brown, Kohlton’s other oncologist came in and gave us the run down.  She gave me all the info from what medications to give, at what time to give them, how much to give, the in case of meds, what to do if questions, how to deal with any bodily fluids, changing diapers and so on.  She listened to all our concerns and answered all of our questions.  Tommy and I remember asking her if the tumor up front would shrink, she told us over time it should.  The plan with chemo was to shrink the tumors, so that they would be easy to “scoop out” that’s what it was referred to.  Dr. Brown sat and played with Kohlton for a good bit.  He loves her!  We left the hospital around 2ish that day.  Kohlton had diarrhea that day as well.  On Wednesday January 11^th, the tumor up front was about 80% gone.  By Thursday January 12^th, there was an outline around the tumor.  By Friday the 13^th, it was gone visually.  We could not see any sign of it.  Amazed!  Saturday and Sunday was fun days for us we just played.  

 Now knowing the symptoms of LCH, the pediatrician and ENT we had should have known something was not normal.  Kohlton had cradle cap at 2 years old, bruises that showed up almost instantly but was not anemic, and the two bumps on his head.  He also had the ear problems.  All these are symptoms of LCH and if these doctors would have not been burnt out they would have done the research.  We are so thankful we met Dr. Ghiglino.  He took us seriously and did something.  Dr. G did the research and contacted other doctors to figure it out.  Without him I don’t even want to think of how long it could have gone not being noticed.  He showed up every day while we were in the hospital to check up on Kohlton, Tommy, and I.  Since we have been home he has called every few days to check on us.  Like I said HE IS AMAZING!  If you are having any doubts about your pediatrician change!  Don't wait! 

Tommy and I had debated taking Kohlton to St. Jude’s Hospital in Tennessee, M.D. Anderson in Texas, or staying here.  Tommy and I thought long and hard.  We decided to stay here to do the treatments.  Dr. Parmley has practiced at St. Jude’s, John Hopkins, and at M.D. Anderson.  He is all three hospitals wrapped in one.  We feel as though he moved here just for Kohlton.  We are thankful we can do the treatments here so Tommy and I can work to keep our insurance and pay our bills.  We are also thankful we are able to stay where our support group is.  Knowing all of you love and care about us is absolutely amazing.  We are so blessed to have so many people praying for Kohlton and our family.  We pray Kohlton will be healed, that he will have little or no side effects from chemo,Tommy and I will have the strength to get through this, that Kason will be a trooper thru this as well, and that the prayers will keep coming.  Please, please keep the prayers coming!