Monday, February 25, 2008 12:25 AM CST

Hello,
Thanks so much for stopping in. The girls are doing well.

Jo had her 18th Birthday on the 20th! WOW! I was so excited for her.

We had a spa day, massages, pedicures, and manicures for the girls, what a treat. Followed by Dinner and gifts. She loved it. We took her to a convenience store and I told her to help her feel more like an adult, she could to go buy some lottery. The first place we went to the guy did not even card her. Weird since she is 80 pounds and 4’11”. Then Keith was bound and determined to get her carded, so we went to a second place and the woman did not ask to see her ID and Keith stepped up and said now she has been waiting to be carded and has not, so the lady carded her. It was very funny. The last couple of weeks have been rough on her. She has had so many worries. She does not have any desire to take care of her medical. She is so afraid she will have to. I told her all she needs to do is sign her name. Until she is ready. She and Jacy have compromised immune systems. In addition to their Fanconi, they have deficiency in Immuglobulin M and B Lymphocytes, which makes it tricky. Some of their immunizations that they have gotten since birth no longer show up when tested. So these little tidbits along with FA make it undesirable for her to work. She really wishes she could. She has had some dreams and issues with aging and FA. Most of the time FA kids and/or adults get cancers, so it scares her. We always work through it. VERY TOUGH conversations.

These kids are so strong! I have not ever seen such strong and delightful children as in these Fanconi kids.

Jo has a couple of appointments coming up. She is going to see Ear, Nose, and Throat the 28th. She has never been able to blow her nose and was born with an asymmetrical face. This causes numerous problems when she is sick. She cannot clean out. She also has jaw alignment problems with this. So we are just going in for a checkup. She will also have an appointment with Orthopedics for neck pain on the 14th of March.

Jacy is doing ok. She is now doing physical therapy for her leg and back pain. It is totally wearing her out. She works 2 times a day at home and one at the therapist office. She has 2 vertebrae that are fused on both the left and right sides. She also has an extra hole for the nerves on the left. This can cause extra pressure and a whole lot less flexibility. She has a very hard time walking. Just about every other aisle at the store she has to rest, poor girl.

We won second place in the Parade contest “America’s Giving Challenge”. That means an additional $50,000 to the amount we raised during the contest for FA research!!! How exciting! Thanks from the bottom of our hearts for all your help!

Please remember all who are fighting to live life!


Thanks again
Krisstina

Sunday, January 13, 2008 1:07 PM CST

Hello, Thank you for checking in on the girls. They have been doing fairly well. We have had some appointments and issues come up.

They have seen dental a couple of times. We see dental for many things, every time a mouth sore appears they have to be checked, due to the high risk of oral cancer.
They have been seen for colds, sinus infections, and so on. All doing well.

Jo started seeing a neurologist for migraines. She started having headaches a few months back. They were occurring anywhere from every other day to every week. They said that is very frequent for migraines and she is now on a medicine for prevention. She started this in December and is doing well, only 2 headaches since.

Jacy has had her normal things happening. She is having her next 6 hour ear surgery on 3-11-08. She will receive platelets at 8:30 AM and get the pre-op physical. Her surgery will be around 12:30 PM. She will be getting an internal reconstruction of the ear and they are going to release the pharyngeal flap that was attempted numerous times over a 5 year period when she was younger. They say that it is acting lazily due to the position and is causing sleep apnea. After the surgery we will stay the night in the BMT unit and more than likely receive more platelets. Then be released in the AM hours. As last time her platelets have to be over 100,000 for surgery. They will need to remain above 100,000 for a week after the surgery to ensure no internal bleeding. Just a recap, last ear reconstruction was on the right ear, there were several deformability found in the bones and connectors. Her platelets started at 53,000, after the transfusion the day before surgery, 6-13-07 they rose to around 133,000. They rose a little more and by day 4 they were 99,000. She got a boost of platelets on that day and by the 6th day, 6-18-07, she was at 67,000. So they do not last a real long time. Her last count in 12—7 she was 44,000 on platelets. So we will go one day at a time.
I will update more as things occur.
I do apologize for the delays in updates. I home school both girls. I also work from home part time, and then we have doctor appointments. Usually the last around 7 hours. They always end up complicated. That’s ok, though it keeps us on our toes.

Thanks again for stopping bye.
Krisstina, Jo, and Jacy

Thursday, November 8, 2007 0:58 AM CST

OH MY GOODNESS!!! Jacy is 16 yrs old today! It is bittersweet. She is so happy! I cried at 12 AM. I am looking at a young lady and my baby at the same time. WOW!

Jacy, I am so proud that you are my daughter! You are a wonderful, caring, and beautiful young lady! I love you and I am so appreciative of this day of celebration I have with you!!

Keep being true to yourself and Be happy!

Happy Birthday!

I love you!
Mom

Monday, October 1, 2007 7:59 AM CDT

Hello and Thank you for visiting our page. We are all doing fairly well. Nothing much has changed. Jacy is now on meds to help her kidney and bladder bleeding. She is going to go to a Cleft palate clinic to reevaluate the 5 pharyngeal flap repairs previously done on her. Then they are thinking on reconstructing the left ear, as they did the right. After a couple of months she has little better hearing in the right ear!!! That was so exciting!! Any improvement is better than none. Jo is good she is getting ready to go get her driver’s License. She feels she is finally ready. We are excited!!

They are growing up so fast. My niece is 18 years old today! I am so not ready for this. Jo is only 4 months behind her!! HAPPY BIRTHDAY!!! SHELBI!! We love and miss you!

Anyway, we recently saw our endocrinologist and are evaluating the girls for the possibility of starting insulin. They say FA patients have a delayed response in releasing insulin, so we will find out soon if the girls do. Pray no problems with this. That would mean daily insulin shots.

They also had bone scans to check bone density and Jo is right on for her age and Jacy is low for her age so they may start estrogen. Very important in bone health, with early menopause. She is already having strength issues in her legs.

Coming up within the next couple months we have Dental, Gynecology, and Hematology appointments. We will keep you updated.

Thanks again for checking in.

Krisstina, Jo, and Jacy

Thursday, August 23, 2007 11:21 PM CDT

Hello,
We returned from camp and vacation on Saturday evening. We were at camp until wed. Morning and then drove down the coast thru Maine, Massachutes, New Hampshire, Connecticut, New Jersey, and New York. We had a blast. We saw a good amount of return families and a good amount of new families. It was great! I loved seeing the kids enjoy themselves at the place that most of them feel that this is where we see the normal people. They feel whole, normal, happy and safe there. I do as well.
We had a great group of medical conferences for the adults, slow but a little progress since last year. At least the researchers are all still interested, that is all I ask. We also had a little fun too!! An adult dinner, masquerade party, talent show, Wish boats, and balloon release. All wonderful experiences and memories we had made.
After camp we drove to New York City. Talk about big and crowded. It was interesting. We went to the statue of Liberty tour. This is where you got to go inside her. Very stunning, Touched my heart. We also took a tour of ground zero. That was wonderful beyond words as well. I took hundreds of photos. I will have to post some. Between Camp and NY I took 800 photos.
One thing we did at camp was join a German study on mouth cancer and sores. They scrapped with soft brushes in both of the girls mouths and will look for cancer changes. It was neat. It should tell us if there are any signs of FA cancer.
We did get to shop in NY a very slight amount. It satisfied Jo for a little while. It was too crowded and dirty for me to get out with the girls’. We went to Upper East Side, instead.
Medically both girls are doing well, for FA anyway.
As I make it through the 800 photos and videos I have I will post a few.

Thank you so much for checking in on my girls!
Krisstina King

Thursday, August 2, 2007 1:33 PM CDT

Hello,
Thank you so much for visiting my children’s web page. I am sorry that I always have a delay in updates.

Jo is doing well; we have several appointments before we leave for Camp next week. Just routine things like allergy, dental, and so on.

Jacy is doing good. We finally figured out why she has been bleeding. She has crystals in her kidneys. She does not have enough potassium and citrate in her urine, which are inhibitors of Kidney Stones. We are going to attempt to fix this with diet. If that doesn’t work we will do a medication. It feels very nice to finally know after all these months.
6 weeks out - Her ear is doing good, two more months until we can test her hearing. She still has pain around the incision site, but nothing major. The inside looks good and the packing was almost gone. The swelling had also gone down some. He said that they both should have been gone around the 1 month mark, but with her ears as damaged as they are/were. We had a lot to deal with. Her left ear is worse than the right one as has been for awhile, the only reason we started with the right was the amount of ear pain. Jacy also has a few appointments before we go to camp. We have them from this Friday, Monday, Tuesday, and Thursday. Busy time for us to prepare for camp.
We are all so excited about camp. Counting down the days.

Thanks again for checking on us!
Krisstina, Jo, and Jacy

Tuesday, June 26, 2007 1:08 PM CDT

I apologize for the delay in the surgery updates. I have not gotten all of the results.

Jo – Jo is good. Her Bone Marrow biopsy and OB/GYN check went well. No Cancers. All the results are back and all is well.

Jacy – well here goes.
The day before surgery we went in around 12 to get CBC and platelets. We had to stay 4 hours and then do another draw. This draw was to decide if we got to go home or we had to stay to get platelets again before surgery. They wanted her to be above 100,000. She made it they went to 167,000. She started at 51,000.
June 15, 2007 – Surgery day. She went in to surgery at 9:40AM and came out at 4 PM. The first surgery was her tympoplasty and mastoidectomy done by ENT. They thought she had a chlosteotoma and were going to repair her eardrum. She did not have a chlosteotoma; it was a bunch of scar tissue from all the years of fluid. Here is a description of what all they did.
The ear canal develops earlier, around week five, from the back of the first pharyngeal groove. Toward the end of the first trimester, cells at the bottom of the canal proliferate, forming a solid plate or plug. In the seventh gestational month, this plug dissolves and the lining that is left behind participates in forming the tympanic membrane or eardrum.
Part of Jacy’s solid plate did not dissolve and was still behind the ear drum and it was larger than normal, he said that 99.99% of all people’s plates dissolve in utero. Her ear drum was perforated and they repaired it. Shaved the bone down some. Her Hammer bone is very large, top and bottom portion. Her anvil bone was not connected and was not looking good so they removed it and placed a prosthesis bone and connector. Also in this area she had a lot of tissue that was not supposed to be there and they removed it. As we told you before the girls Eustachian tube is kinked and does not function right. This tube is too small to fix. The fluid that drains with that tube does not drain on them; it also allows us to pop our ears. They placed a permanent tube around the eardrum to prevent it from harming her further. The temporary tubes they have used in the past get clogged and or fall out.
This surgery took 4 hours.

Next they did the Upper and Lower endoscope. They said all looked well but they took biopsies all the way up and down. They also took samples of fluid. The biopsies came back good and the fluid is not back yet.

Last they did the OB/GYN check. All looked well, no Cancer, but definite ovarian failure.
We got home by 8 PM. She had to go in Monday for a cbc. Platelets were at 99,000. So they let us go. Wednesday we went and they were at 67,000. We got them and we went home. We do not go in again until July 2, 2007. She is doing well. It is painful at times. They cut her along the back of the ear from top to bottom. We have a good 6 -8 weeks for healing.

Monday, June 11, 2007 3:24 PM CDT

Well, I know it has been a while. I am sorry!

Jacy is doing well. She has been having the bleeding issues off and on. The Urologist and nephrologists feel it is due to crystals in her urine. As they travel out of her body they are cutting her and that is why she is having so much bleeding. It is more than likely due to not drinking enough water. When she does drink 3 or more bottles of water daily she is ok. She had another incident starting Monday and in the middle of the week she passed a stone. This is the first actual stone that has occurred. It is at the pathologist being analyzed to see exactly what is causing it. She is having her surgery on 6-15-07 it will be at 9am. It is a 6 hour surgery. The ENT guys are doing a tympoplasty, mastoidectomy, and removal of a chlosteotoma. She will be cut behind the ear as well as through the canal. She is getting a upper and lower GI with biopsies, a bladder scope, and a OB/GYN cancer check. She will need platelets before and after. It will be a play it by ear type thing, if the bleeding is under control then she can come home. We are a bit leery since with her nose surgery, she bled for hours, soaking blankets.

Jo is also doing fairly well. She’s had some issues with TMJ (Temporomandibular joint diseases and disorders, commonly called TMJ, are a collection of poorly understood conditions characterized by pain in the jaw and surrounding tissues and limitations in jaw movements. Injury and conditions that routinely affect other joints in the body, such as Arthritis, also affect the temporomandibular joint) and with her face being asymmetrical it makes it worse. She is not allowed to have things like carrots, bagels, and is supposed to yawn lightly (mouth not open fully). She is also having a surgery this week, June 13, 2007 at 9 am. She is having a Bone Marrow Biopsy and Aspirate along with a OB/GYN cancer check. They do this procedure while they are asleep since they are so small and it can be painful for a regular gyn check and the HPV check, when you are smaller. It is always done in conjunction with another surgery.

The rest of us are doing well. Cameron has been working on weight loss and has done well, losing 20 lbs.

Thanks for checking in on my wonderful, strong, and inspirational daughters!
Krisstina

Saturday, April 7, 2007 1:12 AM CDT

Well the last week was fairly quiet. They are trying figure out what this bleeding is. We had a pelvic sonogram and some bloodwork. They are looking at the thickness of the endometrium and the hormone levels of fsh, lh, and estridiol. So far teh sonogram showed a very thin lining. The fsh is 39.5 and the lh is 9.8. They are not much different than last year around feb. Basically they are trying to cover all areas and just figured to check and make sure she was not fluxuating enough on hormones to mensturate. So far they have not confirmed anything, but I looked and compared last year before all this craziness.
Her ear surgery to remove the tumor has not been scheduled yet, they are working on getting a 6 hr OR. Her ear will take 4 hours, Upper and Lower GI 1 hour, bladder scope 30 min., and maybe a gyn check.

Jo is doing well. She has been having changes in her monthly cycles so she is not happy. We will be scheduling her for the gyn, Bone marrow, and dentist for May. She feels that she is starting to go through menopause.

Thank you for visiting my children's web page.
Pray for al the families in need.
Krisstina

Tuesday, March 20, 2007 11:06 PM CDT

Yesterday morning Jacy started bleeding again, so off to the ER we went. After a long afternoon she was admitted for more tests. The BMT and the Urologist are working together to figure all this out. They are determined to figure this mystery out. This has happened 3 times now.

As the other couple times the sonograms, xrays, and cultures have come back negative. So off to scope we will go, again. This time they are taking biopsies of the bladder. Last time it was just a scope. They saw a very thick wall and a lot of irritation.

We were released today on the agreement of daily contact until this is figured out. So we will see what tomorrow holds.

Please pray for Jacy she is having a rough time.

Jo is also very worried please help her sleep and be well. She is doing so well, I do not want to jinx that. The only issues she has is insomnia, so we need to keep her mind clear.

Thank you for visiting my children's webpage.

Krisstina

Tuesday, February 20, 2007 0:16 AM CST

HAPPY BIRTHDAY TO JO!!!!!!!!!! 17 YRS OLD!!! GOODNESS!

PLEASE LET HER KNOW YOU STOPPED BY.
I love you Jo, Happy Birthday!
Love Mom


I will be updating this week. We just moved back to Cincinnati this last week. A long dreary trip. At times, 20 -40 MPH, Snow and ice! We did make the best of it, it was fairly fun, family time!

Thanks for checking in on us!

Jo & Jacy Box

Monday, January 15, 2007 11:42 PM CST

As always it has been forever since my last update. I have been chugging along. Taken care of the girls. Jacy is slowly getting better, or she was. Just as she is off the antibiotic and feeling a bit of relief. She even got back a tad bit of color. It starts over. YEAH! Maybe it will be better this time. I mean not last as long.

Jo is doing good. THANK GOD! She is been working part time with me and doing her school work. She attends church and is having a great time.

This last couple of months sure have been a test on sanity. My dad was diagnosed with cancer and had surgery to remove it less than a month and a half later. They got it all, No chemo or radiation. Thank god for aggressive doctors. His family has had a tremendous history of cancer.

Well we are also trying to make some decisions on our choice of areas to live. Our house in Ohio is still available and it seems it would be easier and of less financial burden to live there. So we will see what the final verdict will be.

We will be spending some time in Ohio this next month. We will have appointments again the week before the meeting in Cincinnati. Jacy will have a surgery to remove a tumor from her ear. This is a 2-3 hour surgery. She will have to have platelets before. Then we will have Hemoc, GI, Dental, Allergy, and OB/GYN. Who knows about any others. They usually let us know when we get there.

We will keep you informed. Thanks for checking in on us. Please keep praying for the families in need.

Krisstina

Tuesday, December 5, 2006 12:27 AM CST

Well, our story goes like this.
Jacy started having diarrhea on 11-17-06. We started her on the brat ( Bananas, rice, applesauce, and toast) diet a few days into it.

we came for several things arriving Saturday 11-25-06. Seeing Allergy, Hemoc, Gene Therapy check, eye, ENT, BMA/BX, gyn, and Dr. Rose for the Adrenal gland retest for Jacy. And seeing Gene Therapy evaluation., Hemoc, and an endoscope for her acid reflux. Due to fly back home to Kansas on 11-29-06.

I will start with Jo. She had all intended and everything looks stable. Since we had to stay they added allergy on Friday and she will be seeing them more often. She was given a new nasal spray along with her claritin, she was already taking. Her endoscope looked well. Pathology will tell more. She will still take her prevacid.

Jacy still had the diarrhea, soiling her clothes several times. She was having extreme urgent as well as very loose. they decided to sample and add in GI to her list of appointments.

So we saw Gene Therapy, Adrenal with Dr. Rose, ENT, and Eyes on Monday. All good appointments. Adrenal may be returning to normal, praise god. ENT says she is a mess in her ears, her right ear being worse. She has a tissue cyst that requires 2-3 hr surgery, will look at doing in 2-07. On the left side of her nose the internal hole is very small, not allowing for much drainage. Her throat, her pharyngeal flap that was done 5 times in Kansas was looking terrible. Looking at ways to help in 2-07. Her ear tubes from last year, left was gone and right had fallen by the small bones, so it needed to come out. At around 6PM they did a hearing test and he said to tell Hemoc for Jacy's BMA/BX they could page him and he would run down with his equipment and do them real quick. AMAZING!!! Since her surgery was for 6:45 Am arrival. Eyes are very dry and needs glasses. One eye is over functioning and one under functioning.

Tuesday: Went for the BMA/BX and Jacy still had diarrhea. So we had some accidents, she also vomited due to mucus in her sinuses from allergies. We proceeded with the surgeries and all went well. Next Jo had her Endoscope. Then Robin took Jacy to a ECHO to check for damage, due to fluid and such. That was an unexpected appointment but looked good. then Jacy saw Gyn which still confirmed her early menopause. Then we saw Dr. Williams for our reg hemoc appointment. He added on GI and did lots of labs. GI, immediately said we cannot let you leave tomorrow. We need stool samples, that made the 3rd in 2 days. and we will see you tomorrow, all for observation. In the meantime, we went over to the Kentucky site for allergy for her. They are adding shots to her regimen when she is better. They admitted her for hydration and frequency of stools. All tests at this point were negative. They did a stomach X-ray all looked good. So they had given her imodium to see if it could give her GI tract a rest and just watch it. We left the hospital Sunday at 5pm went to a hotel and scheduled our flight out for 4 pm Monday. Woke up Jacy and she went to the restroom and had blood in her urine. I watched it waiting for a second urine and it was the same. Then she vomited from the mucus, it was solely stomach acid. It was very bad, not just a trace. So we had to come back to clinic. Which got our flight canceled. They did tests and started amoxicillan in hopes it was a effect from the stools, like an infection they did not catch before it moved form the stools. So decided to admit for fluid and a renal sonogram this morning. Still no answers as to why all this, not much change in urine. Counts have dropped, so getting platelets today. They want her platelets above 40,000 while bleeding. If we are lucky they will monitor us from the hotel until all results are in. They are looking at kidneys, bladder, and liver.

Latest Counts: WBC - 2.4, RBC - 2.47, HGB - 8.9, platelets - 38,000, ANC - 740. All liver enzymes are still elevated, but one is higher.


Krisstina, Keith, & Cameron King, Jo & Jacy Box ( Both FA-A )
www.caringbridge.org/ks/jojacybox

Sunday, December 3, 2006 2:47 PM CST

****************************UPDATE***********************************
Jacy fainted this morning and now we have no idea what we are doing. Just waiting. I will keep you informed. I will also, post counts later.
*************************************************************************



December 2, 2006
Jacy is in the hospital dealing with 15 days of very bad diarrhea. They are thinking it was a remainder of a infection, even though all the tests were neg. several times. We originally came to Cincinnati for the visit to check Jacy's adrenal gland function, BMA/BX, ears, eyes, allergies, Hemoc, and study. Jo was getting an endoscope, hemoc, and study. We were to leave on Wed. That was a no go when her diarrhea stayed with us since the 17th. So they admitted her and started tons of tests all ok. Still the same until yesterday they gave her imodium and she stopped eating enough to go. Finally today she has a bit and it seems better with this med. We shall see. tomorrow we are going to stay at the Hyatt and rest, let her body try to be normal. See if it returns before flying home Monday.

Krisstina, Keith, & Cameron King, Jo & Jacy Box ( Both FA-A )
www.caringbridge.org/ks/jojacybox

Monday, November 6, 2006 11:45 PM CST

Counts on 10-23-06: RBC - 2.6, WBC - 3, HMG - 9.5, Platelets - 61,000, & ANC - 1000.
Well, Jacy will be 15 in just about a day! Scary! she is so excited. She is really counting down.
It is such a blessing that she has something to look forward to.
She is still using a wheelchair due to the fluid she had gained. It is still the same, no loss as of yet. She is feeling pretty tired, but this kid is such a trooper. This last weekend she rode with my husband in the annual toy run. She was so excited to be a part of helping the kids. She smiled the whole ride and after she told me "it was kind of like a second wish." She said I just love helping others.
She is having a birthday dinner with a few family members. She says I just can't wait to see everyone. Now, mind you she sees these people 2 times a week with me at work.
Please sign our guestbook and give them both hugs on the link on this page. It will be appreciated.
I will put photos of the toy run and halloween in the photobucket.
Jo is failry well, she is having some more bruising. She is not liking, the idea much, that her counts are dropping like Jacy's.
We head to Cincy again ( Yes, we were there Oct. 1-4th.) for tests for Jacy, surgery for Jo, & Other visits. This si when we will find out if her adrenal gland will recover.
Thanks so much for cheking in on us.
God Bless!
Krisstina

Monday, October 9, 2006 11:40 AM CDT

********Newest update.**********
Jacy has had testing done to determine why she gained 20 lbs in fluid. Today I got the last result form the tests which was a test to see if her adrenal glands were working. They are not! Very bad news. She is now having to make sure the first sign of injury or illness she gets hydrocortisone.
Link to web page describing the adrenal gland:
http://www.mayoclinic.com/health/addisons-disease/DS00361/DSECTION=1
Her counts yesterday were as follows:
WBC 3.6
RBC 2.34
Hmg 8.6
Platelets 47,000
ANC 1300
We are due to gets counts tomorrow. Her HMG dropped due to bleeding caused by hormones. Her wbc and anc are up looks like due to a cold. So that is good.
Krisstina, Keith, & Cameron King, Jo ( 16 FA-A ) & Jacy ( 14 FA-A ) Box
www.caringbridge.org/ks/jojacybox



It has been so long since our last update. A lot has happened.

Jo is doing fairly well dropping in counts. Being a fun loving teen. We went to Cincinnati and she has gained 6 pounds in a year and ¼ of an inch. She told Doctor I will take that! She had a visit with Dental, GI, Teen Center, Williams, Endocrinology, and ENT. All was pretty good news. They will do a scope to make sure there is no damage from Acid Reflux. She has a sore in her mouth; they say it is due to falling counts. She gets a new one just about weekly. She is on a new hormone for preventing endometriosis and for dropping hormone levels. She is also due for a BMA.

Jacy is now off Megace and estridiol. She has gained 20 pounds in fluid! They are still researching why!!! They have done CT scans from the chest down, ultrasound, and x-ray. Nothing is coming up. She is doing well, other than the fact she cries when she has to move much! Her skin is very tight and she is very swollen. I rented a wheelchair for long distances and we are putting cream on 3 times a day for the skin. She is just starting to get sores, weird Jo’s counts are higher and she gets more sores. They changed her medicine for Acid Reflux and if it is no better when we go they will scope her as well. She is due ( her 2 year mark is Nov. 15th ) for a Bone Marrow, but they are trying to decide if they still need to do one. The study calls for every 6 months, but since no corrected cells showed they are trying to change it. Jacy has a blood clot in her right ear canal; they say it is probably from a scratch. She has ear drops to soften it and it should come out.

So we are going next month instead of every three months, looks like I am going to have to step up on the fundraisers a bit. Since I can not drive or ride that far, we have to fly and it gets expensive.

We will be going back to Cincinnati in November for endoscopes, biopsies, and dental.

Please continue to remember all of our FA families, nothing is ever calm in our world!
Nicholas for recent illness. The Pearl’s for Matt is in transplant and having a horrible time. Also, remember all those children going to transplant! God bless their families!

Thanks for checking in on us!
Jo, Jacy, & Krisstina

Thursday, August 24, 2006 1:03 AM CDT

It has been so long since our last update. Not a lot has been happening. The girls are doing fairly well. Current and passed counts are posted above.
They had marrows, coloscopies, and skin biopsies (for a study) done on 6-20-06.
All the results from the marrows looked good and the results from the gene transfer study were negative. They also saw the dentist and did well. There is a area of Jo’s tonque that they are watching. They said not to worry, just observation.

Both are enjoyed summer and being back home to Kansas. Although being
home - schooled they attend all year round, so they dislike that! Camp was wonderful. I hope to have photo’s very soon!

We will be going back to Cincinnati soon for our next set of appointments the beginning of next Month.

Please continue to remember all of our FA families, nothing is ever calm in our world!
Continue to pray for Brenda and Mark Carpenter for they have just lost their son Robbie to FA. Also, keep Will, Kayla and Emily in your prayers for his counts dropped last I heard. Nicholas, Spencer, Donna, & Jeff for his ever falling counts. The Pearl’s for Matt is in transplant. Also, remember all those children going to transplant! God bless their families!

Thanks for checking in on us!
Jo, Jacy, & Krisstina

Tuesday, January 24, 2006 3:30 PM CST

We are here in Kansas and getting settled in. We are doing fairly well.
Jacy is in the hospital today due to a fever and platelets of 37,000. She was admitted last night after being monitored all day for fever and it keep rising. Her only other symptom was sore throat. Her temp started at 99.3 and last temp last eve was 103.8. Today it has stayed around 102.1 or 102.3. She received IV antibiotics since last night. She is also getting fluids. Her last CBC today showed WBC - 2.5, Platelets - 37,000, and ANC 1800. She has tested neg. for flu and strep. She has mainly slept. So she is in good spirits! She has slept even during blood draws.
Jo is good. Learning how to drive and getting better everyday. We are drawing near her 16th birthday! SCARY!!
We are planning a trip to Cincy in Febuary to pick up the remainder of our things. It is going to be ok. I feel more comfortable now with our move back here. We will see all the same Dr's, except we will see a local Hemoc Dr for emergencies. Dr. Kelly has been sending him reports on the girls all along. He is the Dr that diagnosed them. So it will be good. I think god has used this illness of Jacy's to test all of us and see how we reacted to illness in Kansas compared to a specialty hospital like Cincy.

I hope all are well. Please pray for all those receiving treatments and that are ill.
Lots of hugs and prayers
Krisstina, Jo, & Jacy

Wednesday, December 28, 2005 4:23 PM CST

I know I know! I apologize again!

I am not going to count days anymore, the study did not work on either Jo or Jacy so it is over as far as watching for cells.

The girls are pretty good. We are in Kansas until the 2nd and then we are moving back on the 4th. I am just not happy alone. After the treatments ended and we did not have to be there daily, I guess my body slowed down enough to figure out what was going on.
So we are all happy about that. No real changes other then that, our Dr's will stay the same, just instead of going to Kansas 5 x a year, we will go to Cincinnati approximatley 4 times a year. Much more peaceful. The girls ahve really pepped up since I told them.
Anyhow, Jacy and Jo are pretty good. Better than in quiet a while. Jacy is on quiet a bit of allergy meds. They seem to help. Which is good. She is on Marinol now to increase her appetite. She lost a bit of weight since her surgery 11-1-05. That surgery has been a real pain. No help what so ever from it either, just more stuff to deal with.

Thanks for checking in on us!
Lots of hugs and prayers
Krisstina, Jo, & Jacy

Tuesday, November 22, 2005 5:25 PM CST

Jo - Day 121 Jacy Day 373

Jacy had surgery on her sinuses, ears, & a Bone Marrow done on 11-1-05. Her platelets were 67,000
which were up from the previous count of 53,000 the week before.Her Hemoglobin was 11.1. Things went well, except
for the nose part. SHe had excessive bleeding, her oxygen level was low, and her blood pressure had dropped.
She was on Oxygen and that did not help, her levels were ranging from 89-94. They then switched he to oxygen with mist.
She had to stay the night and received platelets. The CBC after platelets put her platelets at 140,000 and
Hmb at around 9. She spiked a temp of 101.3 during the night so she received tylenol and
got blood cultures. By morning she was doing a bit better. We wee released later in the day with a oral
antibiotic, nose antibiotic, and instructions to return Friday for a CBC.
Friday's CBc went well she was at 93,000 on platelets and 9 on Hmb.

We had appointments this week with the ENT and Allergy doctor for Jacy. Both went well. She is allergic to all
trees, weeds, and a few other things. We are now on 1 oral (daily) allergy med, 3 nasal (daily) ,
and 1 shot per week. The ENT gave us instructions to hypermoisturize her nose.

Jo is fairly well. She had abone marrow on 11-14-05. Her counts are fairly good. She had a horrible cough, she always
has the same terrible cough. This stems from her not being able to blow her nose. Her face is asymetrical and I am guessing
that along with her cleft palate, she has never been able ot blow her nose. I remember the doctors in Kansas talked about doing a surgery
to repair it later. After Jacy's I am not so sure about that. Jo is doing home school now with instrucction from Thomason
School, an at home school. I am still the teacher, but it makes her feel more independant.

Today we did an interview with Channel 3 news ( NBC nationally) here in Kansas. It will air
on Thanksgiving day or the day after.

We are in Kansas for the Holiday and will return on the 28th. We will have appointments that week
so I will update again then.

Thank you for viewing my children's web page.
Krisstina

Saturday, October 29, 2005 2:32 AM CDT

Jo Day 97, Jacy Day 349
Well I am sure you all are wondering what in the heavens has happened to us. We are still here. Just trying to fuction decently. I am currently home schooling both girls. Jo has been going to Driver's ed. Jacy has been sick with sinuses and such.
We are working with Jo on the adult aspects of FA. She is very worried about the future and children. Jo gets a biopsy on the 14th of November.
Jacy is very tired and uncomfortable and has been for a couple of months. Her counts are still slowly dropping and she has a sinus and ear problem. They found out she has a polyp in her sinuses and are removing it and doing a bit of a roter rooter job on 11-1-05. At the same time they will insert PE tubes and do her biopsy. She has also shown signs of menopause for awhile and the latest blood work seems to show it is absolutley possible. Jacy will also receive some allergy testing on the 16th of November.
So we are trying to deal with these items as best as we can. This disease is horrible and it stinks. I am so worried right now about the future with my kids and as all of you I have a fear of losing them. I am having a bit more fear lately, I am not sure why. Usually I can deal with this stuff pretty well. I am having a lot of sadness in thinking of losing my only 2 children. I do not know. I am just wishing it would all settle down a bit.
We are all in counseling and hopefully we will all see things brighter very soon.
Anyhow, Jacy is turning 14 in November and we are so happy. With going to Kansas for Thanksgiving we will celebrate with the family.
I hope to update again sooner, I am sure I will after the tests.
Lots of hugs and prayers!
Thank you for checking in on my children!
Krisstina

Thursday, September 1, 2005 9:50 PM CDT

Jacy Day 290 and Jo Day 97

Well we are going crazy. We are moving this month, we are getting ready for a garage sale, and we have been house hunting. The good news is that is over, we bought one. Now the packing and moving part gets pushed into higher gear.
Jacy is still not feeling well. She has a sinus infection. She is extremely tired and ears hurt and throat. She has been on antibiotic for 5 days and still no go. So we go in tomorrow again, so we will see. Still no sign of new cells for her, so we will have another go at it as soon as we can.
Jo has started school at Seton and is going 1/2 days. She has a bit more energy, or did before school started. Some of her counts are coming up, but not others. We are hoping that this is a sign of cells, although as of yet there are not any. She had her 3 month evaluation 8-18-05 and no new cells. But that is ok, we will just see and keep letting science grow and learn from their semi healthy bodies.
Well, we are very excited to get out of this neighborhood. Those kids are just taunting us, being rude when we go by and such.
We had a wonderful time at camp
and were so happy to meet all of you! Thank you for all of your knowldge and help.
I hope to see each of you again! Since camp Jo has felt better, less angry. The argue less and that is great!

Friday, July 22, 2005 8:23 PM CDT

I am so sorry, I know a lot of you have been waiting for this day. I had a few claustrophobic weeks. I just barely could get myself to check out other sites and my email. I do not know why, but I just needed a break! I did rearrange my whole house and changed several pieces of furniture.
All that is over now, I am back on the go again.



Day 249
Jacy
Jacy is doing fairly well. She has spells of hot flashes and fatigue, but nothing has shown up. So we are just playing it by ear. All biopsies and blood work is the same as always.


Day 56
Jo
Jo is doing really well. She had signs of new cells show up weeks 1-4, but week 6 was no cells. They say that is not uncommon. The real test is by 6 months. So we will keep praying that they are brewing in her bone marrow. We feel fairly good about it, her energy level is up some and her counts are up a bit as well.
To give a example of what all went on from 5-23-5-27th and the 3 weeks after:
May 23 - Harvest of cells. We spent the night and went home the 24th. They got plenty of cells and they all survived. She received a blood transfusion and antibiotics to help prevent infection. She had 4 access holes that they used to get the cells. The were not real cooperative in healing at first. They had to keep changing the bandages every 2 hours. Finally by the time we went home we had only 1 problem site. YEAH!! The 27th was check in at 10 AM and reinfused by 2PM. She did real well, but her temp and blood pressure over the next 2 weeks were crazy. She had an infection in the 4th hole that just would not close and seeping. Our time was crazy. We had to spend a couple of night, not in a row. We were supposed to be at the hospital for visits at first everyday, then every other day, then 1 time a week. Well, our time was a bit more. Either her BP was to low, heart rate to high, temp. too low or too high. After 2 weeks of IV and oral antibiotics we were in the clear.

Wednesday, May 18, 2005 12:03 AM CDT

Day 179
I apologize for the lack of updates. I have been sick first for 2 weeks with upper resp., Strep, & Pharyngitis. Then it has been coming back off and on.

Jacy has been so weak, that a coffe cup seems heavy. So we have been dealing with that. Her counts have dropped. But we get a biopsy tomorrow so we will see what is going on.

Jo has been good, getting ready for her study. We have gotten her on homebound until the end of the year. She starts her study the 23rd.

We went to Kansas for my nephews graduation from Sat. to Monday this last week. Also, his baby was born So we got to meet him. Very exciting for us.
Now we are home and started Tuesday with dentisis for both and cbc's along with other blood work. So I will be updating counts this week.
Lots of Hugs
Krisstina

Sunday, April 24, 2005 0:34 AM CDT

Day 155
Sorry it has been so long since updating. Jacy has been sick and then Jo got sick. They think it was just a virus.

Hawaii was beautiful. We flew out on Friday morning from Cincinnati. We arrived in Hawaii around 4:30 PM. The Hotel we had was the Waikiki Beach Marriott, we were on the 24 the floor and Ocean view room. It was very scenic. We kind of just hung out and walked on the beach and beach walk, looking at all the stores. Saturday the girls and I went to the Aloha Stadium flea market. After that we hung out at the beach. Sunday we were scheduled to go to the Sea Life Park and Dolphin Adventure. Jacy started getting a fever and she was not able to join Jo in the Dolphin Adventure. We saw a Dolphin Show, Sea lion Show and other things. Monday we went on a Submarine Ride and Horse Back riding. Tuesday we went to the spa and Jo got a massage, pedicure, and manicure. Jacy got a pedicure and manicure. I got a massage. After we hung out on the beach and beach walk. Wednesday we went to the Luau at Paradise Cove it was absolutely beautiful. They did a couple of shows. They showed us how they fish with nets, made lei's and bracelets, tattoos, and other things. The main show was after dinner. We had rice, roast pork, Mahi Mahi ( Fish with coconut sauce), Bread, pineapple, carrot cake, coconut jello. Thursday we checked out of the hotel and went to the Dole Plantation. We walked through the maze, rode the train, and chose pearls. Our flight left Hawaii at 7:20 PM and we arrived home at 10:00 AM. New pics are posted at the link on the bottom of this page.

We just returned from Andrea and David Mcduffie's home in Tennessee. It was a wonderful trip. We hung out with them for a couple days. We visited Davaan's Mausoleum, looked at houses, went to a spa, and hung out with Andrea's family. I really hope it helped. She is doing as expected. But she is okay.

We are now home and setting up for the April 30th Girls Can booth at Sawyer point on Saturday April 30th. We will have a FA booth and sell FA items as well as hand out info on FA. I am excited.

We are also attending Camp Sunshine this year! We can not wait.

Thank you all for your support for our family when our friend Davaan passed.

Also, Thank you for checking in on my children.
Lots of Hugs and prayers
Krisstina, Jo, & Jacy

Saturday, April 2, 2005 11:11 PM CST

Day 134

We are heading to Hawaii on Friday so we will let everyone know when we return. And of course post lots of pics. This week is pretty busy for us. We have appointments Monday, Tuesday, Thursday and we leave Friday.

Lots of Hugs and Prayers

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Monday, March 21, 2005 11:27 PM CST

Day 122
Not a lot to report here. Doing fundraising, dealing with colds off and on. Otherwise all is well.
Jacy's reports came back as no change so far on the study, but they say it can take up to a year. So no bad news to report.
We met the Bogg's family and had a blast. That Nicholas was a character.
We also went to see Davaan and he is good.
We are definitley ready for Hawaii.

Krisstina, Jo, and Jacy

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Wednesday, March 9, 2005 11:04 PM CST

Day 109

Disney trip:
We went to Give Kids The World on 2-12-05 until 2-18-05. The limo picked us up at 7:15 AM. Our flight left at 9:20AM. We arrived in Flordia around 1 PM. We got to GTKW and unloaded, got oriented, and ate lunch. That day we just hung out at the village, looking around. We ate dinner and breakfast at the village everyday. Lunches were out. Sunday we went to Animal Kingdom, Very nice place. Alot to look at. Monday we went to Disney MGM and Epcot Center, also very nice and a lot of fun. Tuesday we went to Seaworld. Nice! Wedneday was Magic Kingdom. We all found it a bit boring. Thursday was Univeral studios and Islands of Adventure, very cool!
Each day except day one we used a stroller, they gave us a free one to use at each park. We also got a lot of free photos, discounts and such with the Make-A-Wish and GKTW buttons.
At each park we got front of the lines, extra time with all the characters, and to ride over and over again without getting off, if we chose to. The workers would push us to enjoy, but we were nice and let others ride too.
Each day at GKTW the girls’ both got gifts. They had a daily newletter, and something going on everyday. Like on Saturday at 7:45 PM they have a Mayor’s party every week. They have a BBQ at the pool, which is heated and Seaworld characters come over. They have fishing tournaments.
We came home Feb. 18th around 8 PM.

Jacy has a cold right now and Jo is pretty good. Even though her menstrual came and no change. Still painful and very heavy. I emailed Robin to see if any of the doctors yet decided what to do.

We are trying to get ready for the Hawaii trip and Jo’s study.

Thanks for visiting our site! Lots of hugs and prayers.

Krisstina, Jo, & Jacy

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Tuesday, February 22, 2005 10:25 PM CST

Day 94
This is not the detailed Disney update, I will give that at a later time. I am trying to get all the photos, videos, and souviners gone through.
We had Dr. yesterday and surgeries tomorrow. Jacy saw the endo. and has gained 3 lbs, and 1 1/2 inch in the last month. YEAH! Levothroxine. Then we had physicals and CBC after for surgery. Jacy has surgery at 8:30 AM for OB/GYN check and BM Boiopsy. Jo has surgery at 7:30 Am for OB/ GYN, tooth grinding, and BM Biopsy.
Disney was great! We arrived Saturday afternoon. We saw Animal Kingdom on Sun., Disney MGM and Epcot Mon., Seaword Tues., Magic Kingdom Wed., and Universal studios and Islands of Adventure Thur. Back home Friday eve. Photos should be posted by tomorrow!
Our trip ended with me crossing the bridge from KY to OH and telling David well this sucks back to reality. I got home to a message that Davaan was out of remission.
I apologize for not updating sooner, I have been trying to get back in the swing of things and planning a trip to see Davaan. Andrea and I feel the girls' should see him. Since they gave him around a month. Please pray for his comfort and visit his site at caringbridge.org/tn/davaan.
Lots of hugs and prayers
Krisstina, Jo, & Jacy

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Tuesday, February 8, 2005 7:37 PM CST

Day 85
Price Hill, OH
http://www.communitypress.com/PriceHillOH/News.asp
Tomorrow there will be a front page story on Jo & Jacy and their Wish trips. This is so exciting and hope fully with this link you all will be able to see it online. It will be in a total of three papers.
We went to a Mardi Gras fundraiser for Make-A-Wish on Saturday the 5th I have pictures posted on the web page link picture trail at the bottom of their page.
Sunday we went to Jacy's wish party where they granted the wish and took her shopping. Those photos are also posted.
Also, Tomorrow we will be doing an interview with a radio station here in Cincy for the telethon that they do every year to raise funds for the hospital. The third annual Warm 98 Cares 4 Kids Radiothon will be held March 17 to 20, 2005, airing live from inside the main entrance at Cincinnati Children’s Hospital Medical Center.
Lastly, Jo is going to be the poster child for a fundraiser through Make-A-Wish this next month with McAlister's Deli. There are 4-5 stores participating, so there will be great coverage.
All of these things are getting the word out on FA. I think this is very exciting.
We have had a eventful week and are ready to go to DisneyWorld. We leave Saturday the 12th.
Jo still has sores in her mouth and chest pains. Jacy is doing good. Talk to you all soon!
Krisstina King, David, Jo (14) (FA) & Jacy (13)(FA) Box

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Monday, January 31, 2005 7:54 PM CST

Day 77
Hello everyone,
We are getting really excited about our Make-A-Wish trip. Trying to get ready.
This week we had an appointment, with Dr. Kelly. Jacy is slowly getting better. And last time they saw a HINT OF CELLS!!! YEAH!!! Things are looking up. I am trying to keep my excitement level down until this weeks results come in. Jo went along today, she has been having some bleeding in her nose and other places. She also has a couple of sores in her mouth. They are preventing her form eating and drinking correctly. They believe they are canker from a possible virus. She is doing some things to help with hunger, a boost shake. And a wash with 1TBSP Malox and 1tsp. Benedryll. Weird mixtures, to help with coating to lower pain.
Anyway, we have a busy week ahead. Dr, Vet, Make-A-Wish fundraiser and Jacy's trip party.
Talk to you all soon.
Lots of Hugs and Prayers
Krisstina, David, Jo & Jacy

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Saturday, January 22, 2005 8:42 PM CST

Repeat and short version of 1-18-05
Day 64
HELLO EVERYONE!
This is the week he is hoping to start seeing new cells. Our next appointment is 1-31-05.
We have a busy next month coming up. 1-31-05 Doctor. 2-5-05 Make A Wish fundraiser. 2-6-05 Jacy's Wish granting day. This is where we all meet with the Wish volunteers and they take us to eat and shopping, for Jacy. They also, make a big deal out of her wish being granted and so on. This is such a blessing! We leave for the trip on the 12th of Feb. and return on the 18th. Doctors on the 21st. Then they are both going to get Biopsies and coloscopies on 2-23-05. Along with all the fundraising stuff for the group and our personal fundraising, we are a bit busy.
We will keep you all updated as we can.
Lots of Prayers!
Krisstina

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Tuesday, January 18, 2005 8:12 PM CST

Day 64
HELLO EVERYONE!
We went to see Dr. Kelly today for Jacy's check up and we think she has strep, so she in on antibiotics. This is the week he is hoping to start seeing new cells. Our next appointment is 1-31-05.
Last week we saw The Endoconology for Jo about her Hypoglycemia and Diabetes. She fluxes back and forth. At night she has been waking up around 2 or 3 with very low sugars. They are checking her for a antibody that FA patients have sometimes, that effects sugars. So in the meantime she is drinking a mix of 3/4c. water with 6 TBS. cornstarch to keep her sugars up all night. So far so good.
Jacy has grown a pound and a half since her last check on the Levothroxine. So that makes in 6 months 1 inch and 1 and a half pounds. GOOD NEWS!
We have a busy next month coming up. 1-31-05 Doctor. 2-5-05 Make A Wish fundraiser. 2-6-05 Jacy's Wish granting day. This is where we all meet with the Wish volunteers and they take us to eat and shopping, for Jacy and to present to us our expense check for Disnay World. They also, make a big deal out of her wish being granted and so on. This is such a blessing! We leave for the trip on the 12th of Feb. and return on the 18th. Doctors on the 21st. Then they are both going to get Biopsies and coloscopies on 2-23-05. Along with all the fundraising stuff for the group and our personal fundraising, we are a bit busy.
We will keep you all updated as we can.
Lots of Prayers!
Krisstina

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Saturday, January 8, 2005 9:09 PM CST

Day 53
Well we made it home safely from our trip to Kansas. All went great!
Jacy is doing great. Her counts are still fluxuating and as of last time no new cell. We go again, the 14th so we will see.
Jo is still having a bunch of female pain, not just during her monthly.
They are looking at doing both biopsies 2-20-95. At the same time a coloscopy on each.
Well we met with make a wish on Wed. Jan. 5, 2005. We have been invited to mingle at a fundraiser Feb. 5th, so we are excited. It will help a bunch. We are having sweatshirts made that say Joy for Jo & Jacy with angels on the front and on the back it says please support Make a Wish and www.fanconi.org. I will post a photo after we get them. Jacy has been granted a wish to Disney world in Feb. 2005 and Jo Hawaii in April 2005. We are very grateful. I cried at the meeting, they are so great. Our volunteers are great Amy and Vicki. We would love it if they could come.
We will update after Jacy's next appointmnet, unless something comes up sooner.

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Wednesday, December 22, 2004 11:45 PM CST

Day 36
We just wanted to say Merry Christmas and Happy New Year!!!

Jacy is good, her counts are still fluxuating.
Jo is sick and on antibiotic.

We are in Kansas for the Holidays, the girls' hated wearing the mask on the plane and at the airport. Jacy is used to it, she always wears one in public, but Jo did not like it.

Talk to you soon!

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Saturday, December 11, 2004 7:21 PM CST

Day 26
Hello everyone,
We are good. Jacy is doing better. She has had a few rough times adjusting to fall allergies, I think. We all have always had seasonal allergies, but Jacy had a extreme change this year. Her asthma was going crazy, after around a year with no attacks. She could not even go upstairs. We got a new nebulizer, the old one was 13 yrs of age and sounded like a old beat up truck. We also got a inhaler, she has never been allowed one of those. She always had the breathing treatments and a liquid albuterol, (Which last Saturday to Monday morning she had a strange reaction to). Dr. Kelly told us what to do on Saturday and changed her meds Monday. Now all is good.
Jo is doing really good except for the female issues, she is thouroughly convinced she will never be able to have children.
Other than that I sent out a group email about the fundraising being done here.
Lots of Prayers
Krisstina, Jo, & Jacy

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Tuesday, November 30, 2004 5:00 PM CST

Day 15
Hello All,
I am so sorry that it has been so long since the last update. Jacy was sick for a little while and we were at the hospital more than home. She is better now.
Things are looking good. Her counts are fluxuating, I will get a copy next Monday and update them. She is pretty much what she was before the harvest. She is still running around with the mask and will be for the winter months. But that is ok, better than being sick.
Jo is good and back in school. She is still on half days. She is getting hearing aids, they have been ordered. They are really neat now-days. She ordered pink backs and clear with pink glitter for the center.
We had a good little Thanksgiving with just the three of us. It was fun.
The girls' dad is back, BIG HELP! So that was exciting.
We are just hanging out at home and going to the doctor visits. Christmas shopping online, and doing home work.
Please remember to keep all of our lil ones and Big ones in your prayers.
Love
Tina, Jo, & Jacy

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Monday, November 15, 2004 9:23 PM CST

Day 0
Hello All!
Our morning started with a IV, along with CBC and other blood work at 10:30AM. This was terrible the nurse could not get much out of the IV, so she drew blood out of a butterfly in the opposite arm. They ended up changing out the IV at around 12PM.
At 11:33AM they strated fluids and we were admitted. The cells arrived at 1:45PM and took 15 minutes to reinfuse. They ended up with 100urvival on her cells through all the work they did, so she got 9,000 back. YEAH! They say it is usual to only save 50
We got vitals every 15 minutes for the 1st hour, then 30 minutes for 1, then every hour for 5 hours. All went well. She was great!
Before the tranfusion, her CBC came back and she has a ANC of 340. So we are on alert. She is masked.
We have to check temps at home every 30 minutes, as usual for transfusion. But all is good!
Jo is good and will be rechecked on Thursday by the oral surgeon.
Thank you all for your support and prayers!!!!
Lots of Hugs, Love, and Prayers!
Krisstina, Jo, & Jacy

Day 6
We are currently at CCH. Jacy was admitted last eve for temp. It is just a protectant while bacterial infection is tested. She had been on antibiotic since last eve. She is doing well. Jo is here with us. So all is ok. We will get out of here tomorrow. The girls' dad is on his way here he should be here within the next week or so. he has decided to move here. Hope everyone is well.
lots of hugs and prayers
Krisstina, Jo, and Jacy

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Monday, November 1, 2004 9:49 PM CST

Hello Everyone,
This last week starting Thursday 10-28-04 Jacy has offically started the Collection study for the stem cells. She has gotten a brief physical every morning at 8:30AM and on 10-28-04 a CBC. Also on those days she received 1.4ML of GCSF per day. It came in two different syringes and so she got one in each arm. She has done real well with it. A little crampy, sore and tired.
This morning we had to be at the hospital at 8AM for CBC and other draws, and waiting to see if she qualified to do the collection, she didn't as of yet.She received a shot of GCSF at 1.4 ML this morning and one tonight for a total of 2.8ML. Dr. Kelly says probabley tomorrow. At the latest, Wed. So keep praying for cells. We want to go tomorrow! Tomorrow and all other days until collection she will get the same things done. The day of the start of collection. She will go to surgery and have a line placement around the collar bone area for the Apheresis. This is how they will collect the stem cells. After she is fully awake they will start Apheresis, this will go on for 6 hours. While doing this she will receive platelets. She has been fluxuating from 70-94,000 this month. We will stay the night and do 6 hours of it on day 2 as well. Then we will go home. If enough cells have been collected she will get the line out on day 3. If not same thing for a total of 4 days. After all the lab is done, placing the good gene in her cells they will replace them around 4 days later. So, hopefully all this will be done by 11-8-04. Dr. Kelly thinks 11-8-04 will be reinfusion day. That is Jacy's 13th Birthday!!!! so it would be neat.
Jo is good she has to see the dentist for wisdom teeth removal, she is in a bunch of pain. She got her flu shot today. And has been pretty good otherwise.
Thank you all for the prayers, keep up the good work!
Love to all,
Krisstina, Jo, and Jacy

11-14-04
Tomorrow is the day for reinfussion. YEAH!!! We have had a few bumps in the road, none terrible. Thank you God! I will update more after. Jo had teeth surgically removed tuesday and a mouth biopsy. She is real good. All is well. Lots of Prayers to you all.
Krisstina, Jo, & Jacy

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Thursday, October 28, 2004 7:33 PM CDT

Thank you all for your prayers. They worked, her counts rose as little as possible, but the protocol was changed to having counts that fell in the range after we signed up for the study. So Thank you God!
Jacy did well with her first shot and now we are praying for soreness to show they are working. Sounds strange to pray and ask for your child to be sore, but I just say for the shots to work. We will try to post every other day.
Thanks again to all of you who prayed for us.

Krisstina, Jo, & Jacy

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Wednesday, October 13, 2004 7:10 PM CDT

Well, we survived another FA week. The girls are both feeling better.
Jo saw a "teen doc" for some female problems and they are looking further into that situation, so please pray she will be okay. Also, we had a biopsy yesterday for Jacy and she did real well.
We will see Dr. Rose next week to see how Jacy's growth hormone trial is going.
Then we are going to officially start the Gene Transfer study the 28th. She will receive 4 days of GCSF. Then counts and if good enough, they will place a Temporary Apheresis Catheter, which goes in around the collarbone area, surgically. This will be left in during the collection procedure. Then they will begin collection, in hopes that within the first two days they get enough cells. If not, we continue with higher doses of GCSF and then collect. After all that we will return in 4 days for reinfussion.
This is so very exciting, but also very stressful. Jacy's counts went to low for the study at one point while she was ill, so Jo was possibly going to go in her place, but thankfully with a lot of prayer she is back up above protocol.
We are going to try to do a few activities before all this starts, since Jacy will miss Halloween and and all this is going on around her Birthday, which is November 8. We are going to a Haunted house and fall festival hosted by the St. Williams Perish Center, on the 23rd. My parents are coming in from Kansas to help me during the study on the 23rd of October, for around 2-3 weeks. Then the day before the study, the 27th, we are attending the Disney on Ice show.
We will keep you all in our prayers.
Krisstina, Jo, and Jacy

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Thursday, September 30, 2004 1:13 PM CDT

Well, this week has been a bad week for the girls. They are both ill, sinuses. I hope this stuff goes away quick. We are trying everything. Doctor's are next.
Jacy's next Biopsy is 10-12-04. So shortly after that is when she will start the new study, around the first week in November, then Jo will follow around 3 weeks after that.
Jo is now on 1/2 days at school and doing better. Jacy is still hanging in there (full-time).
Thanks to everyone that helped with photos. The children are all so beautiful.
Krisstina, Jo, & Jacy

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Tuesday, September 14, 2004 6:46 PM CDT

Well, we met with the docs last week and are looking at another biopsy in Oct. 2004 for both girls. Then we will start the Gene Transfer study. Jacy will go first in November and then Jo in December. We are so excited. It will be a lenghty process, but well worth it for all of the FA patients. We pray everyday that this is what we all have been waiting for. A full force start to a cure. We plan to keep everyone updated on a daily basis when we get started.

The girls are experiencing the same stuff as last year at school, tiredness and soreness. The school's are trying their best to help relieve some of it but no real luck so far. Jo is by far worse off than Jacy. She would sleep all day if I would let her.

Well, on a lighter note. While at the hospital we got the pleasure of meeting a very special little boy, name Davaan. What a pleasure he was. So very cute. He clung to Jacy like no tomorrow. He drug her everywhere. That poor lil thing has gone through so much at the young age of 1.

Talk to everyone soon
Krisstina, Jo and Jacy

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Thursday, August 26, 2004 10:54 PM CDT

We got some exciting news today! The FDA has approved the Gene Transfer study. I hope this is a step in the right direction. In our miracle to help cure this disease.
Jacy also started the growth hormone study (Levothroxine) in July. All is well with that study. No side effects from it as of today.
On a lighter note Jacy started school the 25th and really is glad to be back after 8 months of being at home. Jo starts the 30th and is also extremely excited.
Other than that we have been busy trying to prepare for school and such.
Please remember our friends Nicholas and Darla through the trying times they are having, as well as all others in our lives. Special prayers for all of you!

Krisstina

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Thursday, July 8, 2004 10:44 AM CDT

Well all is well here. The girls' Biopsies were ok. Not perfect but ok. Everything is still low. Anyway, They are possibley going to start some studies on the Bone marrow and stem cells soon. We meet on the 23rd for that. Jacy started her growth study taking it daily, all seems well with that. Jo goes to test for enterance into a good school on Saturday, so that is exciting. I have my work laptop and finally feel half normal. I will keep you updated weekly unless something changes.
Lots of Love and Prayers

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Sunday, June 20, 2004 10:30 PM CDT

I am so sorry that it took so long to update. We were preparing for the Ohio move. Now we are here and things are good. We went to the Dr. Thursday and are awaiting the results. Jacy may start a study in the endocon. dept. with growth, Jo can't since she has reached her bone growth (FULLY). Thay may also participate in a stem cell study, but all that depends on their biopsy results. Since there were 3 abnormalities, they had not been tested for. (like they should have on the other 2 biopsies.)Anyway as soon as all results are back I will update again.

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Tuesday, March 2, 2004 10:40 PM CST

Today we found out some good news. The girls' father (David) is a perfect match for Jacy and I (Krisstina) am a 5/6 match for Jo. Robin from Cincinnati called today and told us. They have known for about 1-2 weeks and did further tests before calling. And they are going to do a second set to be sure, but they felt confident enough to call today. We were thoroughly excited! Just wanted to share our Happy news with everyone. We will know more about what all this means after Tomorrow, a talk with the genetics department. But we know it is all good!

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Thursday, February 19, 2004 9:56 AM CST

I apologize for the delay in updating. We went to Cincinnati the week of 1-26-04 for our Comprehensive evaluation. It was exhausting and still is a shock, everything you find out. I felt that I was well prepared, but I wasn’t. It was very helpful and informative, yet not something any of us want to do and hear about, much less for two of your children. Overall the girls are good. We are still awaiting the final results, but have found a few things out. I will start with Jacy: She has a heart murmur, Diabetes, and is at 650 on ANC, so will probably start some stem cell harvest this summer. We were told that any fever over 101 to call an 800 number in Cincinnati and they will admit her with IV antibiotics. As for Jo she is having and has had for a little while a slow heart rate, she went from hypoglycemic to diabetic, she is doing better on her counts than Jacy. We heard and will hear a whole lot more later, I can not possibly write it all. Everything has changed in our lives and will continue, for the rest of our lives. I will update more after the letters arrive with more information.

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Thursday, December 11, 2003 9:56 PM CST

Just a quick update on the girls. They are both on homebound now. We will be looking at Feb. 2004 as a tentative return. We will be going to Cincinnati Children's Hospital the last week of January for our 1st visit with the Fanconi's Team. I thought it would never get here. I am so ready to hear from them. Other than that both girls are fairly well. We had a SteakFeed fundraiser 12-6-03 and had a fairly good turnout. All profits were split between our family and the family of a boy with Leaukemia.

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Wednesday, October 22, 2003 10:16 PM CDT

I apologize for the delay in posting. We had the biopsies for both girls 2 weeks apart. Jacy had hers on 10-7-03, and she remains stable. Her counts have dropped some, but still no leukemic cells. She is now back on breathing treatments everyday for her asthma, They think the procedures are upsetting her asthma. Jo has been having a lot of back pain and extreme tiredness for the last few months. She is now on homebound and still had no change, so we did her biopsy 1 month early, on 10-21-03. I will hear her results hopefully tomorrow. We had a weird experience this time her heart rate is very low, lower than normal. This was before the biopsy. So I am very interested in seeing what is going on. The meds they gave her, during the procedure, made her very sick, after the biopsy. So anyway now we just wait. Her levels are also lower, and she now shows positive for RBC Morph & shows present for Macrocytes.
I will update again soon!

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Saturday, August 9, 2003 9:43 PM CDT

Jacy - Born 11-8-91
Birth defects - kinked Eustachian tubes in ears, hard of hearing. Cleft Palate. 2 thumbs on right hand, no ligament in left thumb.
Date of Dx - 6-18-03.
Jacy has had excess bruising for about a year. In 1-03 she was hospitalized for dehydration from strep and flu. this is when we found her platelets were low. She was tested every so often for 5 months and they had gone up but still not normal. We started seeing Dr. Rosen on 5-23-03, immediately he said her WBC, RBC, platelets, and ratios were off. That day he told me that he thought she had FA. She had blood work then a biopsy on 6-4-03.

Jo - Born 2-20-90
Birth defects - kinked Eustachian tubes, hard of hearing. Cleft Palate.
Date of Dx - 7-11-03
Jo was tested because of Jacy. She had blood work and then a biopsy on 7-29-03.

WBC - Jo- 3.8, Jacy- 3.6, Normal range- 4.5-13.5
RBC - Jo- 3.45, Jacy- 3.62, Normal Range- 4.10-5.10
Platelets - Jo- 105, Jacy- 110, Normal Range- 150-400
Neutro ABS (ANC)- Jo-.9, Jacy- .6, Normal Range- 1.8-8.0

Signs of FA-
Short Stature - Both
Thumb Abnormalities - Jacy
Skin Discoloration - Both
Low Birth Weight - Both

Next Appointment 8-11-03

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Sunday, July 13, 2003 9:57 PM CDT

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