Going Home

We Finally are going HOME!!!!!!!!!!!!!!!!!!!!!!   Alicia is still having the issues with her stools and eating, but Doc Davies said we are homeward bound. We WILL beat Christmas to Kansas!!!!!!!!!!!! our flight leaves in the morning I will let everyone know that we made it home safe.   We have to be back in Cincinnati at the end of January.


Mee-Ma

Hurry up and wait..............

Still no answers on what is causing all of this......... Echolia has showed up in her urine but not in cultures yet.... Kansas has not identified what organisms are growing and the cultures here are still neg. What ever it is or was the antibiotics must be doing their job. She is still not eating or drinking and she is sleeping alot. Stools are still pure water, yesterday she didn't make it to the bathroom and pooped on the floor like a puppy. My nails have encountered so much poop in the last 5 days,,,  I don't do well with poop and Alicia thinks it is so funny.

its so hard to believe she will be 8 years old in 4 days. time is going so fast i wish it would slow down so we can be together longer.

mommy and daddy Alicia misses you so much. please kiss my boys for me and tell them every day that mee-ma loves them.

Michelle

quick update

Looks like we will be in Cincinnati but not how it was planned. About 3 am this morning Alicia was taken by ambulance to our hospital here at home. Her fever was at 104.7 and she starting seizing. An air ambulance from cincy is on its way now to transport her. Her bands are at 56% which means she is trying to fight an infection. Her pic line was pushed all the way in to her right side of her heart. That's how infection started. She will have to spend her birthday in the hospital which is a week from tomorrow. I will update more from Cincinnati. Mee-ma

Almost "8"

I can not believe that my baby girl is almost "8" years old... there were so many times I doubted that she would make it this far but I proven wrong. God is good!!!!!! I know it has been a long time since I updated, we lost a little boy named Nicholas from FA and I have been kinda depressed. His family is very dear to me.

2 weeks and she will be "8".  We leave for Cincinnati next week to see Doc Davies and I so hope we make it back home before her Birthday. We are set to come back on the 15th and her Birthday is the 18th... so close.

She is doing very good at this point. We are on a roll and have not been admitted in a month. (knock on wood) She is still on every med and has not been weened off any. She is still getting Chemo (Rituximab) every week and fluids every night and High Steroids and Bacterium and Antibiotics and Seizure med and Tacro and Blood pressure med. My kitchen looks like an actual Pharmacy. 

She was so cute on Halloween. She was a little witch. I will post pictures as soon as I get to Cincy and Tina helps me. (love ya girl).

Shel

3infections later

The Mri went good and they found access for another picc in her right arm. The MRI also showed a lesion on her 7the right rib but the docs don't seem to worried. They are just goning to keep a close eye on it and do more frequent scans. I am worried though so it definitely wont be put on the back burner.

In the mean time all of her cultures are coming back positve for gram pos rods. They ha vent identified the type of bug it is yet but the 5th 6th 7th 8th and 9th are positive.  Her central line was pulled on the ninth and replaced with the picc  So far all cultures from the picc are negative. I pray they stay that way or the picc comes out also.

Her spirits are pretty good as long as I have spaghetti for her. I am on my third batch. I have to go to the RMH and cook it, she does not like the one on the menu. She also gets pretty mad if any calls her Alicia, she isw now Princess and she will not answer to anything but Princess. That is something my mom started and NeNe and it has went way overboard. O well if thats what makes her happy.

We will probably be inpatient another two weeks and then out patient A couple of weeks also. I JUST WANT TO GO HOME!!!!!!!!!!!

She misses Mommy and Daddy real bad. She talks to them every night from her cell phone. YES she has a cell phone. NeNE gets the worst of it though cause she calls her every morning when she wakes up and they are an hour ahead in Kansas.


So the plan for us is to hurry up and wait. Hopefully no more positive cultures come!!!!!!!

Mee-Ma

IN CINCINNATI ONCE AGAIN

I KNOW IT HAS BEEN A VERY VERY LONG TIME SINCE I UPDATED. THE SAYING IS THE FEWER THE UPDATES THE BETTER SHE IS. NOT IN OUR CASE.... WE HAVE BEEN IN THE HOSPITAL MOST OF THE PAST TWO MONTHS AND I DID NOT HAVE MY LAP TOP.


SHE WAS MED FLIGHTED YESTERDAY FROM WESLEY HOSPITAL BACK HOME AND WE ARE CURRENTLY IN CHILDREN'S IN CINCINNATI. WE ALREADY MISS THE NURSES FROM HOME, ALICIA WAS FINALLY STARTING TO BE NICE. WE ALSO HAVE VERY GOOD NURSES HERE, AND ALICIA IS VERY WELL KNOWN.


ANYWAY THE REASON FOR BEING MED FLIGHTED IS DUE TO ANOTHER LIN INFECTION. THIS TIME IT IS YEAST, WHICH I HEARD IT IS NOT EASY TO GET RID OF. THIS IS THE SECOND INFECTION SINCE THIS LINE WAS PLACED. THE SURGEON WHO PLACED THIS LINE SAID IT WOULD BE NEXT TO IMPOSSIBLE TO PLACE ANOTHER ONE  BECAUSE ALICIA'S MAIN ARTERIES ARE COLLAPSED. SO RIGHT NOW THE BMT DOCS AND SURGEONS ARE FIGHTING OVER IF IT SHOULD BE PULLED OR TRY TO SAVE IT. YEAST IS VERY HARD TO GET RID OF AND STICKS TO LINES. IF THE LINE IS PULLED THERE IS A CHANCE THAT ANOTHER ONE COULD NOT BE PLACED AND SHE WOULD LOOSE ALL ACCESS AND THAT IS NOT GOOD.


THE PLAN NOW IS TO DO AN MRI IN THE MORNING TO LOOK AT HER VEINS AND SEE IF THEY WOULD BE ABLE TO REPLACE IT. IN THE MEANTIME THE ARE RAISING THE DOSE OF ANTI FUNGAL GOING THROUGH HER LINE IN HOPES TO FIGHT THE BACTERIA.


I AM NOT SURE HOW LONG WE WILL BE HERE THIS TIME BUT IT SOUNDS LIKE IT MIGHT BE A WHILE. I PROMISE TO UPDATE WITH ANY NEW PLANS.

MEEMA

alot has happened

Once again I am sorry about the time in between my updates. I hope everyone is doing well and many prayers to the ones who are not.

We got to attend Camp Sunshine this year. Alicia and I both enjoyed oursefs soooo much. It was a much needed time away besides being in the hospital. We seen many old friends and met many new ones. I was very very nervous and held my breath many times. The worse was having Alicia in the airport in Chicago. I kept her very close to me, and she was transported by wheel chair from gate to gate. We seen an old friend from camp in the Washington airport and he sat behind us during the flight from Washington to Portland. His name is Zac and he is 24 with FA. Alicia just loved him. Alicia also connected very well with a girl named Saundra, she met her three years ago at camp  and remembered her right away. And of course her favorite person of all times was there, Keith, no one ever compares to him. I was very excited to meet Russ Holden from Caddy for a Cure, he was there with his wife.

All went well the week we were there but of course when it comes to Alicia nothing goes so smooth. Two days after we were home she spiked a fever and had a HORRIBLE cough. We took her to the emergency room and they ran tests and it came back that Alicia  had contacted the Paraenfluenza three. That set us four days in the hospital but all is well now.


We will be back in Cincinnati on the 22nd for a week. cross your fingers its only for a week.

Thank you for all of the support and prayers.

Michelle

UNEVENTFUL NIGHT

EVERYTHING SEEMS TO BE GOING WELL. ALICIA ACTUALLY BEHAVED HERSELF AND HAS NOT PULLED ANY SURPRISES. THEY PULLED OUT HER PICC AND NO SHE HAS A REGULAR IV TO HELP CLEAR HER SYSTEM. ALICIA IS TELLING EVERYONE NOW THAT THEY PULLED HER LINE BECAUSE SHE HAS SPIDERS INSIDE OF HER. THE PLAN WAS TO REPLACE THE PICC AFTER 72 HOURS BUT DOC DAVIES SAID SHE IS GOING TO AIT LONGER IF POSSIBLE. SHE SAID AS LONG AS SHE IS TOLERATING THE IV SHE WILL LEAVE IT IN TO BE POSSITIVE THAT THEY GET ALL OF THE SPIDERS OUT OF HER.


SHE IS DOWN IN THERAPY AT THE MOMENT. SHE WAS SOOOO CUTE. SHE IS EARING A PAGEANT DRESS THAT NE NE GOT HER AND IT FLAIRS OUT AND SHE LOVES TO DRESS WITH IT ON. ( GET READY KRISTIN SHE IS GOING TO WARE YOU OUT AT CAMP. )

ALICIA IS BACK I WILL UPDATE LATER.

MEE MA AND ALICIA

ANOTHER LINE GONE

WELL THEY ARE PULLING THE PICC LINE AGAIN. ALICIA DOES NOT KNOW YET SHE IS IN THERAPY, SHE IS GOING TO BE MAD. THE BACTERIA IS STILL GROWING SO DOC DAVIES WANTS THE LINE PULLED AND NOT REPLACED FOR AT LEAST 72 HOURS. SO SHE WILL BE GOING THROUGH GETTING ANOTHE LINE PUT IN AGAIN.


THIS IS ALSO GOING TO PROLONG US GOING HOME EVEN LONGER.W E WILL PROBABLY HAVE TO MOVE IN WITH ERIKA SINCE I AM NOT WORKING AND BILLS ARE DUE. AS LONG AS ALICIA IS OK THAT IS ALL THAT MATTERS.


ALICIA DID PULL ANOTHER LITTLE STUNT YESTERDAY. NEVER A DULL MOMENT WITH HER. ANY WAY SHE CALLED THE POLICE AND TOLD THEM HER MOMMY WASNT ANSWERING THE PHONE SO SHE COULD TELL HER HAPPY MOMMY'S DAY. SO WE HAD THE TALK ABOUT WHEN WAS THE RIGHT TIME TO CALL 911. LEAVE IT TO ALICIA.


WELL SHE IS BACK FROM THERAPY SO I WILL UPDATE LATER.

MICHELLE AND ALICIA

LEAVE IT TO ALICIA

THIS BRINGS BACK SO MANY MEMORIES..................  ALICIA IS DOING PRETTY WELL, SHE DID NOT EAT AT ALL YESTERDAY. TINA AND KEITH EVEN BROUGHT HER FAVORITE FROM MCDONALD'S BUT SHE DIDN'T TOUCH IT. (THANKS TINA AND KEITH) 

SHE HAD A NEW PICC LINE PLACED YESTERDAY AND SHE DID VERY WELL. NOW THERE IS TALK THAT IT MIGHT HAVE TO BE PULLED BACK OUT DUE TO THE VERY RARE BACTERIA THAT SEEMS TO STILL BE GROWING, SHE IS ON SEVERAL ANTIBIOTICS, TWO OF WHICH SHE HAS NEVER HAD. THE INFECTIOUS DISEASE TEAM IS ALSO INVOLVED AND ARE THE ONES WHO SWITCHEDTHE ANTIBIOTICS AND SUGGESTED THE LINE BE PULLED. I WAS TOLD BY HER DOCS THAT THERY WOULD DO EVERYTHING POSSIBLE TO NOT HAVE TO PUT HER THROUGH A NEW LINE AGAIN. THEY SHOULD OF JUST WAITED.


I HAVE BEEN HAVING A LOT OF PAIN MY SELF SINCE I HAVE BEEN HERE. MY AWESOME SISTER DENISE IS SENDING SOME MOR OF MY MEDS, I ONLY BROUGHT ENOUGH FOR A WEEK. I ALSO ONLY PACKED AND BROUGHT ENOUGH CLOTHES AND MONEY FOR THREE DAYS.................. LEAVE IT TO ALICIA LOL.

WE DID GET A ROOM AT THE RMH YESTERDAY, THE LIST WAS VERY LONG I AM SO HAPPY WE HAVE SOMEWHERE TO GO WHEN SHE IS RELEASED.

HAPPY MOTHERS DAY TO ALL OF THE MOTHERS AND A SPECIAL HAPPY MOTHERS DAY TO MY MOTHR AND ERIKA. I AM SOOO SORRY WE WILL NOT BE AT HOME TO PEND IT WITH YOU.

MICHELLE AND ALICIA

COKE NOT SPRITE

THE TALK ON THE BMT FLOOR IS ALICIA USED COKE TO FLUSH HER LINE THIS TIME NOT SPRITE..................... THE FUNNY THING IS I WOULDN'T PUT IT PAST HER.  RESULTS CAME BACK AND SHE IS GROWING THREE VERY VERY RARE TYPES OF BACTERIA. THEY PULLED HER PICC LINE YESTERDAY AND PLACED AN IV TO CLEAR HER SYSTEM. WE ARE GOING DOWN AT NOON TODAY TO REPLACE A NEW PICC LINE. SHE HAS NOT HAD ANY MORE FEVERS SINCE WE HAVE BEEN IN CINCINNATI SO THE ANTIBIOTICS ARE WORKING.

WE DID FINALLY GET A ROOM AT THE RMH FOR WHEN SHE IS RELEASED. DOC DAVIES WILL PROBABLY MAKE US STICK AROUND A WEEK OR SO AFTER HER TWO WEEK COURSE OF ANTIBIOTICS WHICH SHE WANTS DONE INPATIENT.

WE DID GET GOOD NEWS YESTERDAY. OUR SCHOLARSHIP WENT THROUGH AND OUR FLIGHT IS OFFICIALLY BOOKED FOR CAMP. WE ARE VERY EXCITED. LAST YEAR I WAS LAYING IN A HOSPITAL BED DURING CAMP, I AM SO GLAD WE GET TO GO THIS YEAR.

MICHELLE AND ALICIA

HAPPY MOTHERS DAY ERIKA........................ WE MISS YOU AND ARE VERY SAD WE WILL NOT BE TOGETHER ON MOTHERS DAY.

Heading to Cincinnati

The Medical transport team is due to be here in an hour from Cincinnati. They told us we could only bring one bag GREAT. We have three. It wasnt like this was planned, I have my fingers crossed that they will make an exception, I do not know which one I could leave.


Results came back and Alicia is growing MANY bugs. I hope she did not mess with her line again with out me knowing. She is feeling a lot better, the antibiotics have kicked in but I believe they will be pulling her line when we get to Cincinnati.

This was sooo not planned, but then again Alicia is the best at surprises. I have a feeling we will be in Cincinnati at least three weeks. Please keep her in your prayers.

Michelle

St Louis

I know it has been a long while since I updated. Alicia is still about the same she is still fighting GVHD and we are still going to Cincinnati monthly to see Doc Davies.

We were due to be in Cincinnati today, but it has not went as planned. We are currrently in St louis Childrens. Alicia is growing gram neg rods and has had a fever as high as 103. There is talk of transporting her to Cincinnati. Please keep her in your prayers once again.

Michelle

long awaited update

Once again I appolgize for not updating sooner. Every time I found time to update something would come up. I am doing this update at 2am, I couldn't sleep and it is nice and quiet.


Our visit to Cincinnati went well, of course we were delayed going and coming due to the weather but I am getting used to that. I so appriciate the organization that gets us there and they do not take any chances.

Alicia is still doing about the same. Doc Davies started Alicia on Ruteximab which is another Immune supressant which she did not need on top of the others she is on but the Steroids was not kicking the GVHD so we are hoping this will help. Alicia's mouth is still horrible and she does not have much hair left. Doc Davies says this is all due to the GVH. She has to get 5 infusions of the Rutexamab, which she has had three already but I still don't see much change yet. It could take weeks or months before we see any improvements I was told. We still have to go to Cincinnati every month so we will be going back in a couple of weeks. She is still eating and drinking very well which is very important. She is on a chicken kick now. She eats chicken twice a day, I don't dare not have chicken for her LOL. Of course everything can not go just right for us, if it did I would probably faint. Two hours after we had gotten back from Cincinnati we were right back at the Emergency room here at home. We had stopped by my sisters to see her new house she had gotten while we were gone. We were only there a short time when I heard Alicia start screaming. Erika was there also and we both ran to see what had happened and Alicia's leg was gashed wide open. She was trying to carry her two year old cousin up the stairs. She might only be two but she is almost bigger than Alicia. Anyway she fell on the last step which had metal on it. It was aweful!!!!!!!!!!! Below is a picture of it just after we got home from the hospital... Sorry if the picture freaked anyone out............

They had to end up pulling up the skin that was left and cutting it off. Alicia did it without shedding one tear. I couldn't watch though. It still looks bad, we have to change the dressing on it twice a day which Alicia also insists on doing herself.

I also had a little set back of my own. The pain in my side had gotten so bad that I ended up in the hospital also. It is determined to be my gall bladder and I was set to go to surgery last week but the Doc only gave me a 40% chance of making it through the surgery due to my liver so I would not let them operate. I am on some pretty heavy duty pain meds until I can see a specialist and anther surgeon to get a second opinion. Until then I am just tolerating the pain. I will update on the both of us as soon as anything new comes along.

Thank you for checking on us, and again I am so sorry for the length between updates.

CINCINNATI

WE ARE HEADED BACK TO CINCINNATI MONDAY. WE WERE RELEASED FROM THE HOSPITAL ON SUNDAY, FINALLY. ALICIA'S BLOOD SUGARS HAD GOTTEN AS HIGH AS IN THE 900'S AND HER SODIUM WAS DROPPING WHICH IS A BAD SIGN SO THE DECISION WAS MADE TO FINALLY GET HER SUGAR UNDER CONTROL. NOW SHE IS GETTING 2-6 SHOTS OF INSULIN A DAY. IT IS SO FUNNY BECAUSE ALICIA GIVES HERSELF HER OWN SHOTS. SHE IS VERY GOOD AT IT. ALSO IN THE HOSPITAL SHE DECIDED SHE WOULD DO HER OWN VITALS ALSO. THEY JUST ROLLED IN THE MACHINE AND ALICIA TOOK OVER. SHE PUT THE BLOOD PREASURE CUP ON TOOK HER BLOOD PREASURE THEN TOOK HER TEMPATURE AND SHE EVEN HAD TO HOLD THE STETHSCOPE FOR THE DOCTOR.


ANOTHER TEST CAME BACK THAT SAID ALICIA IS ALOS VITAMIN D DEFICIANT. HER GVHD IS STILL VERY HORRIBLE IN HER MOUTH AND THE STEROIDS DO NOT SEEM TO BE WORKING. THEY ARE CAUSING MORE DAMAGE THAN GOOD AS TO WHAT I SEE. HER HAIR IS ALMOST ALL FALLING OUT AGAIN. I AM GETTING VERY WORRIED ABOUT ALICIA AGAIN. I AM VERY GLAD WE ARE GOING BACK TO CINCINNATI. HOPEFULLY WE GET SOME ANSWERS SOON.


ALICIA IS ALSO GETTING HER PICC LINE REPLACED. IT IS INFUSING FINE BUT NO ONE HAS BEEN ABLE TO GET BLOOD TO DRAW SO SHE HAS HAD TO BE POKED TO GET ALL OF HER TESTS DONE WHICH IS DEFEATING THE PURPOSE OF HAVING A PICC LINE. SHE IS NOT HAPPY ABOUT HAVING TO GET A NEW ONE, SHE SAID SHE WOULD RATHER GET A SHOT EVERY TIME BUT SHE IS ALSO STILL ON NIGHTLY FLUID SO THE PICC LINE IS A MUST STILL.


I WILL UPDATE AFTER WE GET BACK FROM CINCINNATI. PLEASE KEEP ALICIA AND ALL OTHER KIDS WHO ARE STILL BATTLING TRANSPLANTS IN YOUR PRAYERS

Results from Cincinnati

Mommy Daddy, Dominic ( Anshons oldest son ) and Alicia

Alicia and Dazzsha ( anshons youngest daughter )

There really is not much change. Alicia's GVHD in her mouth is still horrible. I am very concerned, it has been there several months now and I have not seen much improvement. She is still on the same amount of Steroids, Dr Davies said it will be a while before she starts any weins. She also got a Bolus of Steroids while we were there but it didn't seem to help either. Dr Davies said as long as she is eating and drinking then it will take a while to get her mouth back to normal. The eating issue is no problem though, Alicia eats non stop all day it seems. I did have a meeting with a Dietitian, Amy, and she let me know the best way to keep Alicia away from sugar and carbs because of her high Glucose.

One question I did ask was how long would it be until we didn't have to come every month and the answer to that was we would have to come every month for at least the next six months, she also said that Alicia would not be starting school this fall but she did say we will be able to go to Camp Sunshine!!!!!!!!!!!!!!!!!!!!!!!!!!!! I was so happy to hear that. She said everyone there is a lot more cautious. We are sooooo excited. Denise and her daughter Cassie are going with us. Denise has always been such a huge support for us and her and Alicia are very close so I am glad she will be coming with us!!!!!!!!!!!!!!!!!

Our trip home was way more smoother than the way there. The fog was pretty bad but we made it sage

Very determined FA Mee-Ma

This has been a day I am glad is over. I have decided that FA does have some benefits, it got us out of a speeding ticket today. Although I would rather pay a million tickets than Alicia have FA.

It started this morning, I am sure since I update so often that everyone knows our trip to Cincinnati got canceled at the last minute last week and was reset for Today. LOL surely I updated. Anyway Alicia and I woke up late to start our day of traveling off, my dad arrived 30 minutes early also to take us to the airport so that even made us rush around a lot this morning.

We got to the airport with plenty of time to spare, but the thick fog outside had me worried that the flight would be cancelled again. We got to the airport and the receptionist was checking the progress of the plane and it showed they had landed 120 miles east of our home town due to ice pellets in the fog at the altitude they needed to fly. To make matters worse they could not see the runway to land due to the fog. The pilot said he would wait an hour and let the fog diminish and try to land in Wichita again. Well he tried again only to circle in the air right above me but had to return to the airport because he still couldn't land. So my dad, Alicia and I loaded the car back up and we headed east for a two hour road trip to get to the plane. DETERMINATION!!!!!!!!!!!!!! After we were on the road for about an hour I heard sirens and turned around and a highway patrolman was pulling my dad over. He told my dad he was doing 81 in a 65. Once again the Determination came out of me. I started talking my dads way out of a ticket and let him know I was trying to get my granddaughter to a medical flight in Parsons Ks. Alicia's charm came out and he told my dad to slow down and he let us leave. Finally in the air we landed in St Louis as always to refuel and then more of my bad luck came. We were told we would have to stay in St Louis over night and we couldn't fly to Cincinnati til in the morning GREAT!!!!!! They loaned me a truck and off to the comfort inn we went. So we are stuck in St Louis til the morning. I just want to go to bed and wake up tomorrow!!!!!!!!!!!!! I will update about the trip if we ever make it there.


Mee-Ma