Kenna's Aplastic Anemia Journey - 06.20.2004

June 20, 2004

Adrienne sent an update to most of you while I was gone to the mountains near Denver on retreat. It was a beautiful week. There was no cellular service there, so she sent me the good news by FAX. The counts were so positive that it caused tears of joy, which gave those standing nearby a cause for concern until they could understand.

Here’s her Monday message in case you missed it:

<<Kenna just had her weekly visit to the doctor and it is good news! Her ANC is 330 - the highest ever! And finally a retic of 0.2 - this is usually an indicator that her bone marrow is producing red cells (or beginning to). Here’s the site for an explanation of that term. http://www.chclibrary.org/micromed/00063640.html

Her white cells are in a low normal range of 5.5 (those are the infection fighters which can’t be transfused which she hasn't had up until now, so she has to have made them herself!!) - her red cells are still low at 7.5 (they transfuse at 7.0) and her platelets are at 5,000 - very low but doctor doesn't want to transfuse quite yet since she is still doing so well...we have an appt for Wednesday at noon for platelets and reds so we should be there well into the evening.

I am trying taking it easy myself - being diagnosed with a kidney infection over the weekend...please keep us in your prayers - they are working!! ;-)
Love,
Adrienne>>

By Monday afternoon, Kenna had started to bleed, so she didn’t get to wait until Wednesday for the transfusions Adrienne mentioned in her note. Kenna and Carsyn now both have runny noses, but gratefully with no fever, so her body is handling it!! I returned home with respiratory symptoms and stuffed up ears myself, but at least I can rest assured that they didn’t get it from me since I wasn’t here. Gramma C has been doing double duty and Aunt Kelley is leaving for Hawaii today, so I’ll be the on-call Gramma this week. Adrienne is still troubled with back pain and has an ultrasound scheduled herself. We should get results of that and have Kenna’s weekly check-up on Monday, so will let you know.

Happy Father’s Day,
MJ

Kenna's Aplastic Anemia Journey - 06.10.2004

Date	06/14/04 - Clinic
WBC	5.5
RBC	2.61
HGB	7.5
PLT	5
SEG	6
BAND	0
Retic	.2
ANC	330

Thursday June 10, 2004

The meds and the moods continue. Isn’t it nice that the days are so nearly normal that there’s been no medical update to send?

There was the early morning routine checkup Monday to monitor drug level in“her” blood. (Thank you somebody!!) And there will surely be a visit to the hospital for transfusion before the coming weekend is over. For now she is holding her own and we rejoice that tomorrow will complete three whole weeks home without infection. The girls are thoroughly enjoying each other and exhausting their parents. What a blessing.

If you would like to see the course of treatment of another child who was a year younger than Kenna when he was first diagnosed, here is his family website. He must be about 7 years old now.
http://www.geocities.com/~richiebonett/

I’m leaving for a week in Colorado tomorrow morning, so you won’t hear from me until next Saturday, June 19. Thanks for keeping us all in your prayers, as we gratefully thank God for you.
MJ

Kenna's Aplastic Anemia Journey - 06.06.2004

Date	06/07/04 - Clinic
WBC	4.3
RBC	2.86
HGB	8.3
PLT	175
SEG	1
BAND	1
Retic	0
ANC	86

Sunday June 6, 2004

Yesterday I had my annual “girl cousins” luncheon in San Clemete--a wonderful time--so Adrienne was on her own with Kenna getting transfusion since Chris was with Carsyn. She said it was a very long day. The day care unit was busy so there was a long wait and they didn’t get home until late. The good news is that the marker in her blood test was the highest it’s been yet. A little something seems to be happening in her bone marrow. The platelets she received were from a designated donor and just one day away from being released into the general availability. We are so grateful to all who are coming forward and to those who are encouraging them. I stayed with the girls today while Mommy and Daddy went to Mass and had a little R&R. We had a lovely walk to feed the ducks at the nearby park. Carsyn sure has a lot of energy, while Grandma has less and less. She wanted me to explain that word today.
Kenna’s tummy was upset by time we got home, so we had to clean up after her a bit. But she kept the ativan down long enough for it to work and soon was in the refrigerator singing, “Pizza, pizza where are you?”
At our weekly family dinner tonight, which seems to have been suspended for so long, we got out some old videos of my kids at the same age as these are now. What a hit with the little ones. Carsyn and Kenna look so much like Adrienne and Barbara did at that time, it’s no wonder I so often slip and call my granddaughter by her mommy’s name!
MJ

Kenna's Aplastic Anemia Journey - 06.04.2004

Date	06/01/04 - Clinic
WBC	3.4
RBC	3.27
HGB	9.6
PLT	68
SEG	1
BAND	1
Retic	0
ANC	68

June 4, 2004

Kenna’s been home two whole weeks today. It’s wonderful to have her laughing and up to her old tricks. To look at her you wouldn’t think she’s so seriously ill. So far the efforts to try to keep her germ free by staying home and away from people have been successful. She hasn’t gone anywhere except for walks to the park and to my house. We do lot’s of handwashing and have handiwipes everywhere.

As we anticipated, tonight she started showing the signs that she needs platelets. Since it’s best for the treatment if the levels drop quite low, they have decided to be watchful through the night and try to wait until the morning to go for transfusion. We’ll see how that goes.

Date	06/05/04 - Hospital
WBC	4.9
RBC	2.95
HGB	8.8
PLT	11
SEG	3
BAND	0
Retic	0
ANC	147

Kenna's Aplastic Anemia Journey - 05.28.2004

Date	05/28/04 - Clinic
WBC	3.3
RBC	2.68
HGB	7.6
PLT	12
SEG	2
BAND	1
Retic	0
ANC	99

Friday, May 28, 2004

We went to day care sooner than we anticipated. Kenna woke up this morning with her gums bleeding all over her pillow, so we spent the morning at the doctor’s office and the afternoon at the hospital. She did very well and we were home by 7:30pm. A very long day, but we are so grateful to not need to spend the night!

Today she got designated donor red cells, but they didn’t have platelets from a designated donor for her. The donor center has volunteers on call to come (thank you!!) but it’s so hard to know which day they will be needed. The protocol calls for her levels to drop to a certain low point before she is transfused, so that her body will sense a “need” and get inclined to make it’s own. That, of course, doesn’t happen on a regular schedule.

The good news is that the ANC indicator, which had dropped lately to 0, was back up today, so it means the “trigger” is working a bit. The solution would be to have more A+ donors available so that units are given almost every day of the month. So we also thank those who are still recruiting donors for her! 

Any designated platelets that she doesn’t use will go into the general pool to help others, like the very sick little infant there today who has an even rarer and less curable blood disorder than Kenna’s. 

It is an awe-inspiring thing to watch the life-blood of another flowing into her body, keeping her alive, bringing color back to her cheeks, and to realize she is on borrowed time and totally dependent on the generosity of others, who themselves couldn’t take a breath but for the spirit of God in them. It boggles the mind and stirs the soul to immense gratitude.
MJ

Kenna's Aplastic Anemia Journey - 05.27.2004

Date	05/27/04 - Clinic
WBC	3.6
RBC	2.93
HGB	8.4
PLT	19
SEG	0
BAND	0
Retic	0
ANC	0

May 27, 2004

Kenna’s blood test today showed she still was not ready for transfusion yet. She’s been over a week without a fever. That’s a first since this thing started, so evidently she didn’t burn up her supplies as quickly. Tomorrow she will also have been home a whole week straight too. Another first. And are we grateful!
Probably about Saturday we’ll spend a day in the hospital, but otherwise are looking forward to a quiet weekend.
MJ

Kenna's Aplastic Anemia Journey - 05.24.2004

Date	05/24/04 - Clinic
WBC	3.0
RBC	3.06
HGB	8.9
PLT	58
SEG	0
BAND	0
Retic	.2
ANC	0

May 24, 2004

Week 12

The grownups are pretty tired with lots of catching up to do, and Kenna is rather touchy, with still the restless desire to walk a lot. She had a checkup appointment today that took two hours by the time the blood test report was done. And there will be another one on Thurs, and likely spending the rest of the day getting transfusion. She seems to need platelets about every six days, and red cells every 2-3weeks. But otherwise things are going pretty good. So let’s go with the principle now that no news is good news. Don’t fret if you don’t hear from us. My goal is to catch up on sleep and everything else that’s been neglected.
MJ

Kenna's Aplastic Anemia Journey - 05.23.2004

May 23, 2004

So far, so good.

And she’s still our familiar untrustworthy adventurer!

It would have been a just a peaceful, ordinary, uneventful weekend of usual household chores if Kenna hadn’t decided to go get socks from her own drawer like Momma told Carsyn to do. 

They came running when they heard the crash of the whole dresser coming down, and their hearts stopped when they couldn’t see Kenna. Mercifully she was at the side and not injured at all. 

Daddy spent the rest of the day attaching EVERYTHING to the walls. Being who she is, that is only a partial remedy.

She seems to think of things we can’t even dream of, so we are again reminded who is really her protector and entrust her daily to His guardian angels.

MJ

Kenna's Aplastic Anemia Journey - 05.21.2004

Date	05/21/04 - Hospital
WBC	3.0
RBC	2.88
HGB	8.7
PLT	30
SEG	2
BAND	0
Retic	0
ANC	60

Friday, May 21, 2004

FINALLY they arrived home at 7:30pm. When the daily blood counts came back from the lab, Adrienne knew that if they went home, they would be back to“day care” by tomorrow or Sunday for platelets, so she insisted Kenna be spared an additional transition and they waited while benadryl and then the platelets were infused. That made it late enough that Daddy could pick them up this time. 

Carsyn was thrilled to see them, full of love and attention--for Kenna. She really missed her sister. Kenna was a little clingy and uneasy, but taking their favorite walk around the corner to get a Slurpee was a good welcome home outing for all three girls while Daddy went to pick up the prescriptions. The blood tests are still showing some up and down of the indicators that the bone marrow has a little bit of activity. It’s encouraging but still too soon to say that the treatment has been successful. We’ll keep hoping that another round will not be needed, and that we can avoid another exposure to any infections for a while.

MJ

Kenna's Aplastic Anemia Journey - 05.20.2004

Date	05/20/04 - Hospital
WBC	2.8
RBC	2.91
HGB	8.6
PLT	54
SEG	1
BAND	0
Retic	0
ANC	28

May 20, 2004 Thanks for the appetite prayers—I just got back from running over there to get McDonald’s nuggets for the bedtime snack! She’s eaten everything else they set before her today. Her protein levels had been getting very low, and they are waiting on results from a couple of other tests, so now tomorrow is the promised day to come home. Stay tuned. MJ

Kenna's Aplastic Anemia Journey - 05.19.2004

Date	05/19/04 - Hospital
WBC	2.4
RBC	3.09
HGB	9.4
PLT	75
SEG	1
BAND	0
Retic	0
ANC	24

May 19, 2004


Things are looking good for release tomorrow. The fever has not returned, she’s eating better and holding it today. But things can change so quickly.

So we’re not “counting our chickens before they hatch,” even though the toy of the week is an Old McDonald game that even the doctors like to play with her when they come by. One of her primary doctors got to sit on her bed and play for 15 minutes today. She didn’t want him to come into the room when this all started since he has been associated with the cause of this most unpleasant treatment.

I just heard today that a school in their neighborhood has had scarlet fever going around. I can’t help but wonder if perhaps the hospital has been the safest place for her this month even though it was not our place of choice!
MJ

Kenna's Aplastic Anemia Journey - 05.18.2004

Date	05/19/04 - Hospital
WBC	2.4
RBC	3.09
HGB	9.4
PLT	75
SEG	1
BAND	0
Retic	0
ANC	24

May 19, 2004


Things are looking good for release tomorrow. The fever has not returned, she’s eating better and holding it today. But things can change so quickly.

So we’re not “counting our chickens before they hatch,” even though the toy of the week is an Old McDonald game that even the doctors like to play with her when they come by. One of her primary doctors got to sit on her bed and play for 15 minutes today. She didn’t want him to come into the room when this all started since he has been associated with the cause of this most unpleasant treatment.

I just heard today that a school in their neighborhood has had scarlet fever going around. I can’t help but wonder if perhaps the hospital has been the safest place for her this month even though it was not our place of choice!
MJ

Kenna's Aplastic Anemia Journey - 05.18.2004

Tuesday, May 18, 2004

I arrived at the hospital just as they returned from x-ray. (The results of which later revealed that the lungs are greatly improved.) The walk downstairs left her with a taste for more, but not having crossed the mandatory 24hrs without fever, she couldn’t venture back out into the halls with the other kids. She was heartbroken, but let herself get interested in a game and then took a shower, much needed since the fever broke at 4am in a drenching sweat. She nonchalantly gave Mom permission to go out for some errands. She also ate a bit here and there today without unpleasant consequences, and so far the fever has not returned. Oh, and also they were moved back into a private room at 6am. Many favors to be thankful for today.
MJ

Squeaky Clean!

Kenna's Aplastic Anemia Journey - 05.17.2004

Date	05/17/04 - Hospital
WBC	2.1
RBC	3.34
HGB	10.0
PLT	164
SEG	4
BAND	0
Retic	0
ANC	84

Monday May 17, 04

This all started on March 8. Kenna’s been in the hospital this time straight through since April 19. It seems like months and months, not weeks. It is very hard to accept and impossible to understand.

Her chest tube came out today with no trouble and the doctor said she would probably go home tomorrow after a chest x-ray. With no tubes it was a pleasure to get a shower and walk the halls…for an hour…until a fever started! So again they are confined to their room with Kenna wanting to walk and Momma very patiently changing the subject over and over again. She has been in a private room up til now, but last night they needed it for another child, so was she put in with girl whose mom is also spending the nights. This will be hard on that family living with our night owl.

For now they are presuming the fever is a reaction to the removal of the drain. Depending on what the cultures show and if they can find the room, I guess they may try to isolate her again. When I left at 10pm Kenna had just done her nightly throw-up of the little bit she had nibbled on earlier. The doctors have no good explanations for that except maybe the chemo type meds she’s on.

This is a real test of faith. Discouragement and frustration in the whole medical process, and begging Jesus and Mary to remember for us like they did, that God has reasons we can’t fathom. This is certainly touching a lot of lives and forming one resilient little girl. She’s amazing through it all. They had to move her whole bed because she has a growing sticker collection from every x-ray and procedure. And she carefully decorates her forearms with Sponge Bob and Dora band aides. Once she has reminded them "no pokies," she is very cooperative with all the nurses for all the various mischief they have to do. And how her parents need grace to carry them! It is very hard on all. Thanks for your prayers.

MJ

Kenna's Aplastic Anemia Journey - 05.16.2004

Date	05/15/04 - Hospital
WBC	3.1
RBC	3.43
HGB	10.5
PLT	298
SEG	1
BAND	0
Retic	0
ANC	31

5/16/04

I’ve just been too tired at the end of the day to sit down at the computer and surely nod off. Tonight too, but I’m sure you are wondering how it’s going.

Kenna’s been mostly in pretty good spirits, but still not eating much. We have been trying to tempt her with all her favorite protein which is what the doctors want to see looking better in her blood tests. Her x-ray showed improvement. There will be another one Monday morning to see when the chest drain can come out. Hopefully with are coming to the end of this round.

MJ

Kenna's Aplastic Anemia Journey - 05.13.2004

Date	05/14/04 - Hospital
WBC	3.8
RBC	3.54
HGB	10.6
PLT	86
SEG	0
BAND	0
Retic	0
ANC	0

Thursday 5/13/04

Adrienne got several hours away today to get her hair cut and errands done. Kenna slept the first two hours until almost noon. We barely made it to have a little time in the playroom before it closed for lunch. Then we walked and walked before returning to her room to do puzzles over and over again. We had a great time together and she didn’t even miss Mommy too much.

Adrienne stopped at the store and found the new version of blankie. The basic design is the same, so it has the same weight and feel although the flower pattern is different, and Kenna took to it right away! We are
thrilled that we will be able to have a laundry alternate. Now if we can just get her to eating again so they don’t have to do the threatened feeding tube. If you said a blankie prayer yesterday, then we need an appetite prayer today, please. We don’t know if the lungs are improving because she was asleep when x-ray was ready for her early, and then they didn’t get to do it until late in the day after the doctors were gone.

Shortly after her mom returned looking perky, Great Grandma also came to visit from Palm Desert. I left them for my eagerly awaited regular Thursday massage and yoga class, followed by dinner out. Now I’m mellowed out, not perky, and we’ll see what tomorrow brings.
MJ

Kenna's Aplastic Anemia Journey - 05.12.2004

Wed 5-12-04

Kenna’s up and about, walking her mom back and forth in the hallway. They can’t leave the unit while she has the pump with body fluids. It’s not a very long hallway so it can get to be a pretty tedious trip.

Sometimes they stop in the playroom at the end of the hall to play the one Playstation II game available that has caught Kenna’s interest, “101 Dalmatians”. All the others are violent or sports it seems. Does anyone know of some others we could donate to the hospital? She has a Nintendo 64 setup in her room, but no preschool games for that either. I’m afraid video games are outside my area of experience.

Blankie got collected up and thrown into the laundry with the bedding today. Good thing they got back to the room and noticed before it was too late. Adrienne has looked at Gymboree to find a “twin” but it’s an old pattern
and unavailable, so it would be a great loss. I should get a photo of it to pass around. Maybe somebody still has one tucked away.

My sister Ann came up today from San Diego and got a nice photo. And here's Carsyn enjoying pie on Mother's Day.

MJ

Kenna's Aplastic Anemia Journey - 05.11.2004

Date	05/11/04 - Hospital
WBC	2.7
RBC	2.66
HGB	8.1
PLT	239
SEG	1
BAND	0
ANC	27

Tuesday - May 11, 2004

The HEM/ONC (Hematology/Oncology) unit that has become home was only half full of patients last night, so at midnight Kenna and Adrienne got to move back to their same room. It’s the “negative pressure room” with extra precautions against germ contamination. The anteroom with a separate door
gives a double barrier against sound too, so it’s the quietest room on the wing. Nice!!

Adrienne finally got to go home for a little while today because “nothing” was happening: no procedures, no tests, etc. Kenna had just been given a dose of morphine so she slept all the while I was there. Mom came back looking refreshed and tells me they have been out walking the halls this evening. Kenna’s doctors think she is amazing. They usually have to plead with their patients to get moving.

She got a unit of red cells today, again from a designated donor, not the general supply. Thank you!! And also for your notes and remembrances. In our distraction we already often can’t remember what came from whom, but we do appreciate your thoughtfulness.

I also thank those who pass the notes on to others since my list is already so long. But it would be helpful if after you hit “forward” you go into the message and “select and delete” the long list of other recipients before you“send”. Someone out there has a virus that is snagging random email names from anywhere it can find them and sending out bogus contaminated messages.

I get several a day. The advantages and disadvantages of modern technology. 

Here are some Mother's Day photos.

MJ

Kenna's Aplastic Anemia Journey - 05.10.2004

Week 10 - Monday, May 10, 2004


It sure seems a lot longer that that! And some days are longer than others. We agree this was a very long day. Kenna has had good vitals for a couple of days, so to get ready to discharge her she was scheduled for a follow-up CT scan at noon. That meant nothing to eat in the morning, with a long hard wait while distracting Kenna. With delays, they did’t get done until 2.

The results were surprising and disturbing. Her right lung is collapsed because of fluid in her chest, and she has pneumonia in the left lung. She had no symptoms! So they made us pack up the room to move to pediatric intensive care to drain the fluid. After 3 weeks staying there, it’s quite a collection of toys, gifts, snack foods, clothes, videos, etc.

Another hurry up and wait, wait, wait. They gave her twilight sleep again, as they did this afternoon to keep her still for the CT scan, and did the drain about 9:30pm. She’ll now have that again for several days. The good news is that they had platelets from a designated donor ready for her. Thank you to the donors and the recruiters out there!!

The hallways today were full of firefighters standing around in support of two of their comrades whose two-year-old son was a drowning victim Saturday night. He didn’t make it. They were standing vigil on Mother’s Day last night while we were having a family picnic dinner in the hospital patio. Our trial pales by comparison.
MJ

Kenna's Aplastic Anemia Journey - 05.09.2004

Date	05/09/04 - Hospital
WBC	3.5
RBC	3.01
HGB	9.1
PLT	42
SEG	3
BAND	0
ANC	105

Mother's Day - 5/9/04

It’s Sunday morning and what a gift we have today!!!. Adrienne just called and the indicator in Kenna’s blood test is 105 today. That means there may be a trace of activity in her bone marrow. Still a long way to go before she would make any cells of her own or get anywhere near normal levels, but a glimmer of good things to come.

Also, the primary doctor says he is inclined to wait and see about the mass in Kenna's chest since she is not symptomatic, so the surgeon is not going to do anything else just yet. They are going to stop the IV and start on oral meds as a step toward going home. Today we'll accept that with gratitude, knowing that tomorrow it could change just as quickly.

Happy Mother's Day to all the Moms and to those who are celebrating the love of their Moms. This is also the anniversary of my First Holy Communion. The gift of Our Lord's Precious Blood seems even more precious now since Kenna doesn’t have any. If you've seen the movie of The Passion, you'll know which scenes are coming to my mind. It’s as hard to comprehend as Kenna’s illness, so I ask Mary to appreciate this inconceivable love and mercy for me.

MJ