Friday, September 24, 2004

Very disappointing news today. The results of the bone marrow test that was done on Wednesday show that there is no improvement. It looks the same as it did 6 months ago. Kenna's counts have been steadily declining in the last couple of weeks, so it really is no surprise. She will need to go back into the hospital for another week of the strong drug therapy that caused so many complications last spring. The date to begin is tentatively Monday, October 4.

The doctor is still encouraging. She sees 1 or 2 of these cases of aplastic anemia every year, and in her 30 years has only had 1 case that did not respond to the second round but needed to go for bone marrow transplant. The majority of cases always need two rounds which eventually result in a cure. Since her immune system is already greatly suppressed, this course of drugs may not be quite as difficult as the first time.

Her transfusions have gotten a bit trickier too, as her system gets more sensitive. Now she needs to get benadryl with red cells as well as with the platelets to counteract hives and fever reactions to the infusion.

Thank you for continuing to support us with your prayers and blood
donations.

October 8, 2004

The treatments are finished and they joyfully came home this morning. Now it is wait and see while dealing with the side effects-but hopefully no complications.

One side effect is that her blood will need to be replaced more often, so she will need more donors. Although she got red cells at the start on Monday, she needed them again already last night. Usually they have been lasting her about two weeks. There was no A+ available so she was given A-. That complicates her antibody concentration, and leaves someone else without the A- blood if it should be needed. She will be burning through her platelets more rapidly than one week, too. We sure appreciate those who are giving regularly, or who are recruiting and encouraging others of A+ type to
come.

Another difficulty will be keeping her germ free. She's like the "bubble
 boy" now, with her immune system completely suppressed. With her
bacteria-fighting immunity totally destroyed, even the slightest infection, which we would fight off without even knowing that we had been exposed to something, will give her a fever-which will require a return to the hospital for a minimum of two days of precautionary IV antibiotics. So all the sources of infection are hopefully eliminated-she's staying in and houseplants are out, visitors are discouraged, and vigorous hand-washing is practiced by all.

October 12, 2004

So far, so good!!  Kenna's been doing pretty well since coming home. Her appetite is incredible-we were warned about that -due to the steroids she'll continue to be on for two weeks. She's got a good start on looking like the Pillsbury doughboy before she's finished. She's restless and gets demanding food cravings, but her temperament has been much more mellow than the last go-round. That's a great blessing for her tired parents. At least when she's not sleeping at night, she's not also so irritable. Is it from being a three-year-old now instead of  "terrible two"? Her chattering and vocabulary certainly have kicked up a notch in the last few weeks.

Monday she went for her regular blood draw. Her counts have not completely fallen off to zero yet, which is to be expected from the drug treatment last week to suppress her immune system. That is also a positive right now because Carsyn is coughing and sniffling. Today Kenna's nose is running, but no fever yet, so she's fighting it on her own. Since I'm leaving tomorrow for a week, we hope no hospital time is going to be needed.

There were designated platelets due to expire today, to she went for her infusion this afternoon instead of as she was scheduled tomorrow. We are sure learning to take one day at a time and go with the flow. Surely that is a grace-filled life lesson that will have long reaching benefits for all of us-tempered as gold in a furnace, like the scripture says. Pray that we accept all the graces from this experience.

Not to leave Carsyn out.she's thriving in Kindergarten. Doesn't want to take her uniform off for the remainder of the day. Adrienne has learned from the other moms that Carsyn is the favorite playmate of all the boys.which is the way Carsyn likes it. She seems to enjoy going to the office with me when her Mom has be with Kenna for treatments. She always has a craft project or drawing in process. Tomorrow Adrienne is going with the class on a field trip to the pumpkin patch-real live growing ones on vines-so maybe I'll get photos.

October 21, 2004

More counts were done today - and we are scheduled for platelets again tomorrow afternoon. We will be glad when she is off the prednisone - she will eat us out of house and home soon, luckily McDonald's is not the choice food this time around - tuna and hot dogs seem to be the favorites...everything in large quantities this time.

Her temperment is better this time too, already used to the doctors and hopsital environment, everything is not so overwhemling to her this time around.

We still get at least two screaming fits a day, but she is more easily placated. When she gets something in her head she sure doesn't want to let it go easily! And she keeps up a constant chatter A L L D A Y long. She has occasional fits of wanting to leave the house (usually the pumpkin patch) but is more easily distracted with puzzles and coloring than the "I WANNA GO OUTSIDE" screams from last March. Our hope is to keep her in a "bubble" and avoid too much exposure to the outside and the subsequent trips to the hospital.

October 25, 2004

Kenna and Carsyn have both been fighting a cold and cough for about 3 weeks now - Carsyn's finally seems to be clearing but Kenna's cough is still terrible and the doctor has prescribed Robitussin with codeine to help her sleep at night (they want her to cough during the day) We started weaning her off the prednisone on Saturday and her belly is slowly going down - she is not eating as much - last week she was able to polish off 10 bowls of coco puffs in one sitting! Her cheeks are still puffy as ever and she is looking very tired too due to the cold!

Kenna got a flu shot at the hopital last Friday, and Carsyn is on the waiting list at her peditrician - scheduled to get one next week, Mom, Dad and Kelley aren't as high risk so no flu shots are avialble to them - at least the kids will be protected!

The doctor sent us home with a blood pressure machine and medication from Infusion on Friday - her blood pressure was a high (156/95) and we know her pressure has been running bit high - it is a side effect of the cyclosporine she is on..but with the prednisone in her system too it is becomeing worse and we need to monitor her at least 4 times a day and adminster medication as needed...funny thing, it only seems to be high enough to require medicine when we are in the hospital...I guess stress is a trigger!!

She has kept these red cells since we were discharged from the hospital Oct 8, going on 3 weeks now - her longest ever! We go back in tomorrow for more counts and to listen to her cough again.

Saturday 11-6-04

You just never know from day to day. When Kenna went for her checkup yesterday, she was doing pretty well considering last week. Her platelets of course were low, so they gave her a hospital appointment for this afternoon.
Just before she was due to go, she became sort of listless-but it was
nap-time. By the time they got there she was all flushed and feverish. The nurses got the resident in right away to confirm their suspicion of
dehydration. So tonight they are spending again in the hospital getting IV fluids along with the platelets and another round of testing to rule out all the what ifs and what evers.

So instead of Adrienne going to LAX to pick up Carsyn and Daddy from their trip to visit the other grandparents in Arizona, I went up there
tonight--and then we stopped at the hospital on the way home. I stayed with Kenna so Momma could go home with them, hear all about Carsyn's first jet flight, tuck her in, and pack her own bag for the night.

Again there are always plenty of positives. Kenna was very pleasant about letting Momma go, I happened to bring a little bag with just the right toys and snacks, her fever was already down after getting the fluids, and her ANC-that indicator number we always watch-is higher now, only a few weeks after the second treatment, than it was until three months following the first round last spring.

Last weekend Kenna got directed donor platelets, but tonight they were from the general supply. It's very hard to keep enough donors coming regularly with her needs fluctuating so much. But you'll have to come see the new state-of-the-art donor center on the main floor by the chapel. Really plush new recliners for the platelet donors with private pull down TV/computer screens. Come on down!! And thank you!!!

Tuesday 11-09-04

Kenna and Adrienne got to come home this afternoon. There's been no fever since Sunday morning and the tests were all negative, so having completed three days of  IV antibiotics, she was released to try to stay germ free at home.  Hopefully Adrienne will get a few good nights of sleep in her own bed. Kenna sleeps just fine anywhere-once she settles down sometime after midnight!!!

Thursday November 17, 2004

Kenna's been in and out of the hospital this week, and is back in now until at least Friday. She seems fine, as soon as she has had a couple of rounds of antibiotics into her, but she has to stay the course for the recommended days.

She had gone for platelets late Sunday when they had room for her at
infusion. Then Monday she was again showing all the signs of dehydration like last week, but wouldn't drink--our guess is because her nose was so very stuffy. So late in the day she went for IV and then stayed for red cells, too. At home in the middle of the night she started running a fever, so has been back in isolation since Tuesday morning. Daddy, Kelley and I have been sharing the hours with Carsyn, and spelling Adrienne when we can.

The very exciting news is that Kenna's ANC has elevated to over 900, just six weeks after the second course of treatment, and there are some signs of some baby blood cells starting to form. We hope the trend continues this time!

Today is the feast day of Kenna Elizabeth's patron saint. I pray that we are all open to receiving grace through this difficult illness, and for the intercession of this saint in her special gift of healing. For those who would like, here is Father Leszek's homily for the day:

The Memorial of Saint Elizabeth of Hungary, religious (1207-1231)  Today we read the Gospel about a good servant and a wicked one. We can say that every Saint is a good servant. That's why we can learn a lot from every Saint. Today we commemorate Saint Elizabeth of Hungary. She was a daughter of Andrew, King of Hungary. When she was 14 she was married. She had three children in her marriage. Saint Elizabeth devoted herself to prayer and mediation. She also dedicated her life to the poor. Twice a day, in the morning and in the evening she personally cared for those who were particularly repulsive.  Saint Elizabeth's confessor wrote about her:"Before she died, I heard her confession. When I asked her what should be done about her goods and possessions, she replied that anything which seemed to be hers belonged to the poor. She asked me to distribute everything except one worn-out dress in which she wished to be buried". Very soon after her death, miracles began to be worked, especially miracles of healing. Today's Saint teaches us respect and devotion for other people who are in need. She devoted her life to people in need because she recognized Jesus; she understood his words from the holy Gospel about final judgment:"Whatever you did for one of these least brothers of mine, you did for me." We can learn many good things from today's Saint. We can imitate her gentle and compassionate heart.  The attitude of gentleness and compassion is very important, especially today when we experience lack of mpathy.  So let us pray through the intercession of Saint Elizabeth that God may form in us this wonderful attitude of gentleness, compassion and empathy.

Thursday 11-18-04

I see how distracted I am.the better to trust in grace and not in myself!! Yesterday's note was wrong -- today is the REAL Thursday.

As I was getting ready to go over to spell Adrienne at the hospital this
morning, so she could spend some time with Carsyn after indergarten, she called to say the doctor is releasing Kenna since she's been fever-free. So again the day is different than we anticipated. Now I'm standing by to pick up Carsyn from school because the hospital red-tape will probably not get Adrienne here in time. Unfortunately, Kenna's count is back down to a disappointing 100 though.what a ride we are on! Thanks for the prayers which help us to hold on tight and trust where it's taking us.

Monday 11-22-04

It's been a nice, uneventful, whole week at home for Kenna, except for the couple of times she and Carsyn came to my house while her folks actually got to go out for some time to themselves. Today she went for her weekly check-up and then for a platelet infusion. Her ANC is again back up a bit to 400, and she has a few little white cells to fight infection! We hope that holds so that we are comfortable having her mingle with the family members who are coming here for Thanksgiving dinner. But meal or not, we are very grateful as this holiday approaches that she has come this far though this difficult illness.

Thursday, November 25, 2004

Happy Thanksgiving 2004! We had an awesome one!!

Yesterday it looked certain that it would be spent in the hospital. Kenna woke up feverish and quite congested. I'll spare you all the unpleasant details, but we had to keep a towel handy. She slept most of the day and complained of headache. The fever went to the critical 100.5, which since March has never resolved itself, but has always resulted in a three day visit to the hospital. However, since she had the good white count on Monday, the doctor had us just continue to monitor it. It hovered there but never went over and then amazingly when she woke at midnight after a long nap, the fever was gone, the congestion was merely a mild runny nose and she was happy and perky.

This morning her lips, which have been cracked and sore for weeks, were completely healed. She looked and acted perfectly healthy. Both girls were in fine form with all the unfamiliar relatives here, and Carsyn got to enjoy the whole turkey leg she has been talking about for weeks. We had a lovely meal together and feel a sense of ratitude far more profoundly than we would have before the events of this year.

Thursday - December 16, 2004

My goodness! It looks like my last update was on Thanksgiving! I hope you've guessed that no news is good news.

Here it is the Advent season of "waiting" when we recall God's first coming in this vulnerable human condition (is it ever!). We anticipate His return (could be any day-as it was for Bill 6 years ago today), while experiencing His coming every day in the events that remind us of His love for us and our dependence on Him (so many supporting us, and medicine doing the best it can--but grace the final solution). We've had a good chance to realize it in this busy holiday season, while also waiting for a cure. The most recent blood test showed an ANC of 1600, the highest ever!! Kenna's been able to weather the family bouts of colds and stomach flu without going to the hospital. Things have been in a pretty normal routine of doctor visits and infusion-but no serious infection, just a chronic runny nose. She even got to visit Santa Claus, go to a performance of the Nutcracker, and see Carsyn' s Christmas program at school!

Although there is this improvement, she will continue to need regular
transfusions for a long time, so thank you to those who are faithfully
donating during this busy season and who are encouraging others to come to the donor center.

January 2, 2005

Happy New Year  -  It is for us!  Kenna's ANC at her checkup this week was 1800 - the highest yet. She's thrilled to be able to be out playing with the other kids, even though she will be sporting two black eyes for quite a while from a little smack she got in the forehead with a hockey stick (just looks a little bruised on both sides of her nose).  She didn't make much of it, and it was after the holiday photos, so we remain grateful. Even if her counts continue to improve, it will still be a long recovery before she has enough platelets of her own to heal injuries at a normal rate. Thank you for those donors who are continuing to keep her supplied every week.

March 2005

Infusion Center (Day Care) visits

Saturday April 9, 2005

Now that Kenna has completed the second 6 month round of treatments, a bone
marrow sample was taken this week. We got the disappointing results on
Friday. There is no improvement and she is being referred to UCLA for bone
marrow transplant consultation. Since her counts have been steadily dropping
over the last couple of weeks, it was not surprising, but still it  is
difficult to have a concrete verdict which dashes hopes and wishful
thinking. Her regular doctor was not on duty, so questions will have to wait
until Monday morning.

As you can see in the photo, our little dancer hardly looks so seriously
ill, and in-between the twice weekly doctor visits and transfusions, daily
life has taken on a familiar routine.  It will take a month to wean her off
of the drug program she has been on. We don't have any answers about what
the procedure will be after that, but certainly some more major adjustments
are on the horizon.

The other photos are of Carsyn ready for softball, and of Kenna with her
friend Taylor who is also in treatment at the same hospital with a different
chronic condition. They happen to live nearby, the dad's work in different
departments at the same company, and the mom's have become good friends.