Kelsea needs a Liver

Latest happenings related to Kelsea

 11/03/2015

Well Kelsea is growing up to be a beautiful young lady.  She graduated from high school at 16, and moved to Mesa to go to college.  It was hard for me to let my baby girl move out before 18, but she is very responsible, and feels like she is living on borrowed time.  She got a job at Dennys to help pay for an apartment and a car, and college.  She had been doing real good until she got sick again and ended up in the hospital.  She has been stressing so much about losing everything she had built because of 3 weeks in the hospital.  I know how she feels.  I have been paying her medical bills for so long and there were times, and still are, that I think I will drown from the debt.  This is a major set back for her.  

Docs keep pushing off the inevitable transplant, and Kelsea's lungs keep getting worse too.  She does remain upbeat most of the time.  She has definitely been a delight in my life.  She started a new fund-raiser.  For the next few weeks, it will be a go Fund me page. That GO FUND ME page is to help her stop stressing about her bills, and just get well.  The donate button on this website is for her medical bills.. Either one is such a great help.  If you get a chance to read her blog, you should.  She is so much more fun than me!!    

https://www.gofundme.com/uh7zv6mw

10/09/2012

Does anyone have any idea how hard it is to watch your kid be chronically ill?  It has been very hard for me emotionally.  As a parent, it is horrifying, yet, I am grateful for each and every day that I have her in my life.

Kelsea is in the hospital again.  GI clean out, Lung Infection and Esophageal Banding.  She will be in for at least 7 more days, disrupting school again.  She is going to to the public High School now, and got involved in cheer-leading.  She loves it, but worries every time she has to miss a practice or game to be sick, worries that they won't allow her to participate any longer.  She loves it.

There was a teacher that came to her 504 meeting that stood up and said, "Maybe she shouldn't be in my class with her being so feeble and all."  Really?  These people are not very professional sometimes.  I pulled her out of the class immediately.  But, I am offended.

Not any closer to getting her liver.  "not in crisis mode yet."  Whatever. Sometimes I do not understand the medical profession.  Kelsea has a friend that just got his new liver.  It was July 20, and he is still on shaky ground, but starting to feel better.

Romano is still out bicycling.  He is frustrated that no one has made that big donation, but he continues to meet so many lovely people that give him what they can.  I am so grateful to him, and to everyone that has helped us out.  We have many good friends out there, and even those i don't know that have been generous.  

Thank you all for your support.  We love you all. 

 

07/18/2012 

Kelsea has to have surgery every 4 weeks for the next 6 months on her esophogus. The blood will not go through her diseased liver fast enough, so it creates vericose veins in her throat.  when one of those veins burst, she goes for a shunt to re-route more blood.  When the shunt fails, they will do the transplant.  I just have to watch my kid deteriorate in front of me.  That stinks!  she just spent 10 days in the hospital for a lung infection.  She got out on 7/03/12 just to turn around and have surgery on the 12.  On the 15th she left for cheer camp, but still not fully recovered.  She just keeps going. i dont know how she does it. 

Romano is in Missouri, trying to raise funds along the route.  He is very discouraged.  Everyone should meet him out on the route, for support.  He will be stopping by fort bragg, where my son is.  That would be cool if they could do a fundraiser of some kind.  Our medical insurance just started over on july 1st, and we already hit our $5000.00 deductible. In 17 DAYS, so boom, another 5000 gone.  She is an expensive kid, but well worth it. 

Any and all help is very appreciated.

 

04/22/2012 We are so excited to help Romano raise money for Kelsea's medical expenses. Visit http://www.fraank.org/ to learn more.  You can also make a donation to Kelsea right here on this website.  Kelsea is feeling bad more than she is good these days.  She still gets around to cause havoc on us parents, having some of the same issues as any other teenager.  Dr. Miloh has scheduled her surgery for 5/24/2012.  It is the last day of school for her and she is not happy she must miss the party!  He is banding her esophagus to prevent bleeding from the back up of blood  that is unable to go through the liver.  I still need to figure out where that blood will go if it isn't going there.  Stay tuned......

 

03/20/2012  Kelsea just spent 21 days in the hospital.  Her blood plateletts are down, and a CF bacteria is hurting her lung function, but this visit was just supposed to be a gastro visit.  Just a clean out.  The liver Doctor wants to do an endoscopy and band Kelsea's esophagus so that it last longer on bleeding.  Once it starts to bleed, she will have to go to Children's LA for a shunt to re-route blood that her liver can not handle.   This is all getting too technical for me.  I just think back to her 6th grade year.  I can't believe it took us so long to figure out what was wrong.  I believe in my heart, that without the fevers from the mold, the constant use of Tylenol to break those fevers, that Kelsea would not be in the condition she is in today.  I do not trust the liver doctor, so I am thinking about changing.  Kelsea dos not feel good most of the time.  Doctor Miloh says that is to be expected with her liver disease.  I can't believe I have to sit here and watch her health decline so much, before the next step to transplant.  Thanks so much for your prayers.

 

01/05/2012  Kelsea is now an insulin dependant diabetic.  I cried so hard in the hallway of the hospital.  Kelsea just looked at me and said, "Mom, pull yourself together.  I am the one that has to shoot myself in the stomach with a needle every time I eat."  She is so strong.  She just adapts to everything that is thrown at her.  Me on the other hand, I do not handle things as well.  The doctors are avoiding transplant until the last minute, because we could lose her, or the donor, during the operation.  So, as long as Kelsea's liver can still perform most of its duties, they will wait.  We are pursuing a case against Tylenol, because we feel that is what caused this whole liver failure thing.  Of course, its the mold at the school that caused the fevers, that made us give her Tylenol. It should not be too hard to prove with 24,000 people on the Liver transplant list, and all of the class action suits against Tylenol.  The weird thing is that the liver doctor says I can still give it to her in smaller doses.  I DON'T THINK SO! Anyway,  Kelsea is still participating in TaeKwonDo, even against the doctor's wishes.  She says she is not going to lay around in bed for the time that she has with us.  Looked right at the doctor and said that. Fundraising has stopped for the most part, although a nice young lady in Cottonwood still brings us jar money on occasion.  Kelsea's medical for 2011 was almost $11,000.00.  This was my portion.  Ofcourse, it was over a  $100.000.00 This is all medical expenses, like deductibles, co-pays, Prescriptions, trips to Phoenix (gas and food), Parents food while staying at hospital, loss in wages, etc.  She is an expensive kid.  I thank the Dear Lord for her everyday.  Thank you to everyone for your love and support as we make this journey. 

 

11/04/2011 Kelsea had 2 surgeries yesterday to try to find out what is making her sick.  Her blood sugar is eratic, causing headaches.  Vitamin A levels low.  Spleen enlarged is dangerous too.  Liver can not handle the blood flow, so the back flow of blood is trying to push out her esophagus.  Its like vericose veins just waiting to burst.  Liver is causing too much stomach acid that has already caused damage to her stomach.  Everything is failing her, and I do not understand the decision to wait on the liver.  I am meeting with a whole team of doctors on november 22.  I will let you know what happens. 

09/27/2011 Kelsea's transplant is inevitable, but when is what no one knows.  Kelsea currently has MRSA in her lungs, as well as Pseudomonus.  Her vitamin A is not at a high enough level because of the liver.  If she can't get enough vitamin A, her CF will be compromised.  As if MRSA and Pseudomonus didn't compromise it enough? Her liver function tests remain steady, except the vitamin A.  This is good, because we would like to put off the transplant as long as possible.  She actually feels pretty good.  If I am so grateful that she is not in the hospital more often. We left the Doctor today with 2 new medications.  Cipro is an anti biotic, and TOBI is an inhaled medication that our local pharmacy will not even fill because it is $5300.00 per month.  I fight that battle tomorrow.   We are headed to the transplant center  at CHILDRENS LOS ANGELES on 09-11-2011 for her evaluation.  We are trying to include a mini vacation for her and Kyle.  Just a couple nights in Vegas at a hotel, then on to Utah to see their sister.  Just a little getaway that is so badly needed.  PCH is supposed to be ready to do liver transplants by January 2012, but the insurance company will not allow us to change to from LA to Phoenix, until Phoenix has 1 year experience under their belt.  PCH is a phenomenal hospital, and I have no doubt that they will give Childrens LA a run for their money in the transplant field in no time at all! The fund-raisers appear to have stopped completely.  A young lady in Cottonwood still has jars out, and the rec-n-cru said they were doing one at a tournament in November. Check out their website. THey have been awesome! We will hit the fund-raisers again as we get closer to transplant.  Thank you all for your love and support.

 

Today is 04-13-2011  After a major doctor appointment yesterday, we learned some great things about Kelsea. First of all, she is doing great, and feeling fantastic.  Children's LA ran many tests on Kelsea on March 8, and yesterday, all was revealed.  There is a new doctor at Phoenix Children's Hospital, that has been brought in to help get a Liver Transplant program started at PCH.  That is exciting for us, because they believe it will be up and running before Kelsea needs her transplant.

On November 18th of 2010, a doctor walked into Kelsea's hospital room, and told us she had END STAGE liver disease, and needs a transplant.  THe next 5 months we battled with the insurance company and did fund-raisers to raise the expected $250,000.00 that would be our portion of the transplant. A contract was finally signed that would allow her transplant to take place at Children's LA for only $12,500.00. This of course did not include all the additional expenses. We went there on March 8, for an evaluation. This appointment decided the urgency of her transplant.

 So this is what Dr. Miloh, Liver Specialist, has decided.  All of Kelsea's numbers have improved since removing the fungus from her sinuses, getting the MRSA out of her lungs, and putting her on Liver meds.  She is in stage 3 Cirrohsis. There are 4 stages.  They are going to wait until she gets to stage 4 to list her on the transplant list. Which is another problem as there are so many people out there that need liver transplants, that she will not survive long enough to get to her name on the list. She can however, use a live donor. At that point we will be able to search for some one that is willing to be a donor and is healthy enough to do so. Meanwhile she will have blood tests every 3 months to monitor, and an endoscopy and doppler ultrasound every November.   He says that if we can keep her CF from acting up, she may not need to be listed for a few years.  That is fantastic news for us.  There of course, is another side to this.  Waiting and not knowing, and quality of life.  Her spleen is enlarged, which stops her from playing sports or going on roller coasters, etc.  She has vericies, which are bleeding,  not bad enough yet to treat.  (not knowing when)!  As a parent, putting off this transplant is good news, because technology's growth in the CF world is getting better and better.  Even in the liver transplant world!

What does all this mean to our fund-raising efforts?  Kelsea's medical bills are approximatley $10,000.00 a year.  It will cost at least $20,000.00 in living expenses during the transplant period which is 3 months. The money we have already raised will get us through this year and hopefully next year, providing nothing else goes wrong. This will also provide for living expenses during transplant. Since we are changing transplant centers we have no idea what the expense will be for the transplant. We also have no idea what our insurance will cover from year to year. All things considered this web site will continue to be active, and donations can still be sent in. When Kelsea moves to stage 4 Cirrohsis we will have a better idea what we are facing.  You and I both know, there will never be enough money, with a terminally ill child. 

There are so many people that have helped us get this far in the fund-raising efforts.  I want to thank everyone. You are all wonderful.  I have people who helped with fund-raisers, donated money, time, and raffle prizes.  

For those of you who do not live in our area, we live in a small town of 12,000 people and feel so blessed that they have opened their hearts and wallets to help us so much. You cannot possibly know how much this means to us. God Bless all of you! And please continue to pray for Kelsea.

Also please consider becoming a registered donor and let your family know your wishes. You may save someones life. 

I will keep everyone updated as we pass this time.  WAITING!  

Regina Freeman

Please read Kelsea's story below. 

 

3/22/11- Sorry we haven't updated in a while we went to LA for kelseas evaluation two weeks ago. They said I need to keep fundraising because the cost cand still be up to 250,000 dollars. :(    So lets fundraise!  Were going to phoenix for sinus surgery on Thursday she is not too happy with that last time she had that surgery she blood out of her nose for weeks. Hopefully this will go a little better.

12/10/2010- Started our day at Phoenix Children's Hospital. Kelsea needed a Doppler ultrasound to see if she still had a blood clot.  Yep! Still there.  3 more weeks of shots in the stomach! They increased the dose of the Lovenox (blood thinner) As you can imagine, she's thrilled.  Then to Pulmonology.  Shes lost 2 more pounds, but her PFTs (Pulmonary Function Test)  were 85. THats pretty good.  Then, that afternoon, we got to see Dr. Ursea.  She said Childrens LA Hospital is where she were take her child if it were up to her.  So, decision made.  She has sent in the referral for Kelsea to be evaluated in January.  I have to wait for their call. 

I call the insurance company, and they say we have to pay for the flights, food, lodging, then submit receipts.  Perfect! How do they expect families to do this?  We both work, but Kelsea prescriptions this last month were $500.00.  THats the co-pays mind you.

Dr. Ursea says they will not use me as a donor until Kelsea is in failing health, because I am her main caregiver.  THey will look for a non living donor, or trauma victim.  Talking about this is so sad.  I have so many questions, and they all have to wait until her eval in LA.  THe entire day was spent at doctors offices.

12/14/10 My next day off, we travel to see Dr. Simms.  He got involved because of the Aspergillus(Mold) that had been packed in Kelsea's Sinuses for a year now.  THey did not figure that out fast enough if you ask me.  Anyway, she had sinus surgery and cleaned it all out.  Then we went and had Kelsea's pictures taken at Walmart.  THey are beautiful.  No more Dr. appointments until January 4th.

12/17/10 -Bloody noses constantly.  They even start at night when shes asleep.

12/18/10- They stop the Lovenox and we take her to a lab to to check her platletts. 

12/28/10 -To Phoenix Childrens hospital for another Ultrasound.  Dr. Goyal decides that the risk of fixing her vein with the Lovenox is worse than her not ever being able to use the vein for another PICC line.  No more shots!  But, they find out she is Anemic.  Another prescription for Iron!

 01/02/2011 . A man has asked me about the ligitimacy of this website.  I will post this.  Phoenix Childrens Hospital   Account number  357126 $3036.54    Phoenix CHildren's Hospital Account number 20957869  $1823.80.  1-800-404-6627  These are two of the many medical bills.  If you need legitimacy, send your money to those accounts!  When you are all done with those, I have more!  Stay tuned!

01/04/2011 . Fundraising like crazy. Need more ideas? A spagetti dinner is planned for Feb. 3rd at the Camp Verde Middle School, all proceeds go for Kelsea's expenses.  Dr Simms says Sinuses look good but wants a CT Scan to be sure.

01/09/2011 Excellent weekend fundraising. Spaghetti dinner ticket sales doing really well. Donations are good also. Everyone is being so helpful.  Sponsor is Camp Verde Middle School student council where Kelsea used to attend school.  Students at American Heritage School will be selling tickets also. Cottonwood fireman Shawn Kuykendall has also taken tickets to sell to his fellow firemen. His wife Ashley will be selling tickets also. Every little bit will help. Thank you all so much!!

01/13/2011 WOW! What a shocker, just found out from our patient advocate that our out of pocket for the transplant will be $200,000. She will work on getting that changed, but said it is not very promising. Somehow I don't think we can sell enough Spaghetti Dinner Tickets to raise that kind of money. Will keep you updated.

01/16/2011Looks like we will be going to the transplant center at Childrens Hospital in Los Angeles the first week of February for her evaluation. It's scary, this is starting to happen. Kelsea is feeling well most of the time, although tired from anemia.

 Ashley and her friends, Leandra, Renee, and Joanna are fantastic fund raisers. They  sacrificed their Saturday off to stand in front of Safeway in Cottonwood to collect money for Kelsea. They did a great job and many thanks to all the folks in Cottonwood and the surrounding areas that donated.

01/17/2011Well, last night was another expensive hospital bill. Kelsea now has a bowel obstruction. Spent about 5 hrs in the emergency room at PCH. They will try to dissolve it with medication but if not it will probably be another surgery. We will just pray she can dissolve it. They also did a liver function test, results were same as last time, so she is holding her own on that organ at least for now.

01/27/2011Well, Kelsea had a great checkup. Her pulmonary function test was 78.6. Unfortunatly her CT scan was not so good. They need to redo the sinus surgery in 3 weeks. She is sure not looking forward to that. It was bad enough the first go around. Still waiting for a signed contract with Los Angeles Childrens Hospital. She cannot go for the evaulation until the contract is signed. We are still working on fund raising, so we ask you to please send the web site to all your friends.

Thanks to everyone who is participating in the fund raising, whether donating or working on donations. DON'T FORGET THE SPAGHETTI DINNER FEB.3RD.

02/15/2011 Sorry folks, the intention was to update this at least once a week but so much has been happening, I got a little waylaid. Kelsea's great grandmother, 97 passed away on Jan. 31. We had a lot of out of town company. Most of them were able to attend the Spaghetti dinner on Thursday, the 3rd, which was a hugh success. Gotta tell you Kelsea makes a good autioneer. Funeral services for Grandma were held on Friday the 4th. More fund raising on Saturday. Doing prep work for the booth at the Wine and Pecan Festival which took sitting in a booth the next Friday, Saturday, and Sunday. We did ok there but not near as good as the Spaghetti dinner. We have a few more fund raisers scheduled and are attending a planning  meeting tonight for a cookbook fund raiser. Our visit to Los Angeles was postponed as the contract was sitting on some lawyers desk. We have a tenative date of the 28th of this month. We have also postponed the sinus surgery until after the LA trip.  I sure hope this happens this time so we can get answers to all our questions. The main one's being when's it going to happen and how much is it going to cost?? Meanwhile we're working hard on the Bachelor Auction hoping we can meet or beat the same dollars as the Spaghetti Dinner. We have some ambitious people working on it. Needless to say Kelsea is in the middle of it all. She's our star. Keep checking our Calendar and if there is a fund raiser near you, please attend if you can. Check out the Upcoming Events. 

02/24/2011  Finally we have a date for Kelsea's testing at Los Angeles Childrens Hospital. Testing dates will be March 8th and 9th. We'll just make in home in time for the Bachelor Auction. We will get the answers to all our questions(I hope).  Can't believe it is finally happening or I should say starting. This is really scary. Did find out it will be a 3 month ordeal. Then Sinus surgery again on March 24, 2011. 

03/06/2011

Wow, what fun!!! Thanks to Rikki and to all her helpers for the Zumbathon.$2500.00!!!!!  If you haven't tried this new craze, you just gotta do it. Everybody danced their hearts out for this Little Girl! She has become known all over the Verde Valley. The Newspapers and Radio have just been wonderful. Thank you all.

03/16/2011 WOW! What a busy 2 weeks. The Zumbathon (Great Fun), then two days of testing in LA. They will not put Kelsea on a liver transplant list. There are 30,000 people already on the list and she will not live long enough to get to where she is listed. SO-----We need to find a live donor. This is also a time consuming process as they will only test one person at a time. Our appointment with the Liver Doctor is on the 25th, she will give us the results of her testing. They did tell us that the liver is sustaining her life at this time so they feel we have the time to test for a live donor. Meanwhile there will be several more trips to LA for testing to make sure she is still at that stage until we can secure a donor.

We returned in time for the Bachelor Auction that raised $15,333. What a wonderful community we live in. Everyone in this community is doing their part to see that this little girl gets her liver transplant. Then on Saturday Kelsea flew to Odgen, Utah to spend a few days with her sister, Jessica who is putting on the Benefit Auction up there in June. Kelsea will be arriving back tomorrow morning and spending part of the day in Phoenix with her friend Luke. Then on Saturday the Chasers Fund Raiser in Scottsdale. Sorry Kelsea, Back to School Monday!!!!

03/24/2011 Sinus Surgery Done AGAIN! Fat cheeks but other wise she is ready to GO again. Appointment with Liver Doctor in Phoenix tomorrow.

03/25/2011 This visit with the Liver Doctor was to introduce Dr. Miloh, who is a Liver Transplant Specialist brought into Phoenix Childrens Hospital to set up a Liver Transplant Center. No more trips to Los Angeles. Dr Miloh has all her test results and we will see him on 04/12/2011.

 04/13/2011 

Today is 04-13-2011  After a major doctor appointment yesterday, we learned some great things about Kelsea. First of all, she is doing great, and feeling fantastic.  Children's LA ran many tests on Kelsea on March 8, and yesterday, all was revealed.  There is a new doctor at Phoenix Children's Hospital, that has been brought in to help get a Liver Transplant program started at PCH.  That is exciting for us, because they believe it will be up and running before Kelsea needs her transplant.

On November 18th of 2010, a doctor walked into Kelsea's hospital room, and told us she had END STAGE liver disease, and needs a transplant.  THe next 5 months we battled with the insurance company and did fund-raisers to raise the expected $250,000.00 that would be our portion of the transplant. A contract was finally signed that would allow her transplant to take place at Children's LA for only $12,500.00. This of course did not include all the additional expenses. We went there on March 8, for an evaluation. This appointment decided the urgency of her transplant.

 So this is what Dr. Miloh, Liver Specialist, has decided.  All of Kelsea's numbers have improved since removing the fungus from her sinuses, getting the MRSA out of her lungs, and putting her on Liver meds.  She is in stage 3 Cirrohsis. There are 4 stages.  They are going to wait until she gets to stage 4 to list her on the transplant list. Which is another problem as there are so many people out there that need liver transplants, that she will not survive long enough to get to the top of the list, because the liver will complicate the CF. She can however, use a live donor. At that point we will be able to search for some one that is willing to be a donor and is healthy enough to do so. Meanwhile she will have blood tests every 3 months to monitor, and an endoscopy and doppler ultrasound every November.   He says that if we can keep her CF from acting up, she may not need to be listed for a few years.  That is fantastic news for us.  There of course, is another side to this.  Waiting and not knowing, and quality of life.  Her spleen is enlarged, which stops her from playing sports or going on roller coasters, etc.  She has vericies, which are bleeding,  not bad enough yet to treat.  (not knowing when)!  As a parent, putting off this transplant is good news, because technology's growth in the CF world is getting better and better.  Even in the liver transplant world!

What does all this mean to our fund-raising efforts?  Kelsea's medical bills are approximatley $10,000.00 a year.  It will cost at least $20,000.00 in living expenses during the transplant period which is 3 months. The money we have already raised will get us through this year and hopefully next year, providing nothing else goes wrong. This will also provide for living expenses during transplant. Since we are changing transplant centers we have no idea what the expense will be for the transplant. We also have no idea what our insurance will cover from year to year. All things considered this web site will continue to be active, and donations can still be sent in. When Kelsea moves to stage 4 Cirrohsis we will have a better idea what we are facing.  You and I both know, there will never be enough money, with a terminally ill child.  After the transplant, should there be money left over it will be donated to another child needing a transplant.

There are so many people that have helped us get this far in the fund-raising efforts.  I want to thank everyone. You are all wonderful.  I have people who helped with fund-raisers, donated money, time, and raffle prizes.  

For those of you who do not live in our area, we live in a small town of 12,000 people and feel so blessed that they have opened their hearts and wallets to help us so much. You cannot possibly know how much this means to us. God Bless all of you! And please continue to pray for Kelsea.

Also please consider becoming a registered donor and let your family know your wishes. You may save someones life. 

I will keep everyone updated as we pass this time.  WAITING!  

Regina Freeman

05/10/11

Kelsea has a Hepatitis A shot.  Apparently liver transplants patients often get hepatitis after the surgery, so the docs wanted her vaccinated for it now.  She has had fevers all week, and showing signs of intestinal blockage.  She has 3 doctor appointments on 05/17/11 so we will see how she is doing then. 

 

Our Fundraising Continues

We are currently running a GO FUND ME campaign. Kelsea is in the hospital for a couple weeks and is stressing about paying her bills.  It was easier for me when she lived under my roof, but she had to go out on her own.  She worked hard to get her own an apartment, took out a loan for her own car, and go to college, so this could be devastating to her little world.  Please visit the link to learn more! http://https://www.gofundme.com/uh7zv6mw

Liver Lovers