Monday, March 8, 2004

Kenna's being admitted into Long Beach Memorial Hospital tomorrow to get her platelets restored because she has a count of 10,000. We've noticed some unusual bruising and the Dr just called the results of this afternoon's blood test. I've attached the article to tell you about what she has so you can say a prayer for her. Adi said the Dr said she might have to spend the night.

Wednesday, March 10, 2004

Thank you all for your thoughts and prayers for Kenna....she is home now and back to her usual curious self. We have to curb her bounding off the walls tendency for a while as the doctor doesn't want her doing anything where she could possibly hurt herself and cause internal or external bleeding as it takes longer to clot now. So of course, she chose tonight to take a nose dive off of her changing table – climbing up to try to get her door open—and gave herself an impressive black eye.

She was diagnosed with ITP

http://www.itppeople.com/FAQChildren.htm

(her platelet count being only 10,000) and thankfully she is Rh positive and therefore treated with the quick and easy (20 minute IV) treatment of Anti-Rho (D) immune globulin instead of the 2-3 day one.

We had quite the adventurous day at the Long Beach Miller's children's hospital on the Hematology-Oncology floor.  We spent most of the day just waiting, for labs, the doctor etc.  Kenna did have to get an IV in her hand for the day...but such a brave girl hardly a whimper when it went in - the trick was to keep her from pulling at the tape (and the cord) all day! Boy did she hate being connected to that thing all day! . I spent part of the day over there to give Adi a break and CC joined her after work.

Carsyn went to work with me and then I took her home to bed.

They just got home from the hospital at 11. both little girls were real troopers. I'm beat. A and CC must be exhausted.

First day of treatment - Friday 3-12

Kenna's platelet counts are down to 5,000 today - but the doctor has taken a wait and see approach since the next step would be steriods and they have some serious side effects...we are going back again next Friday....please keep us in your prayers!

Monday 3/15 Recap

We're busy keeping our rambunctious 2 year old quiet so she doesn't injure herself. Last week we noticed her bruising, and she's been diagnosed with ITP -- an auto-immune disorder from a virus causes her to kill off her own platelets which are responsible for clotting.

http://www.childrensbloodfoundation.org/whatsitcalled.html

Her platelet count was 10,000 on Monday, she spent Tuesday at the hospital for a treatment, but by Friday her count was down to 5,000. the doctors still want to wait and see if they come up by this Friday. usually an acute case is self-limiting to 6-12 months and the alternative treatments have lots of side effects.

But in the meantime she has to be protected from bleeding and internal injuries, a big job for a tantrum prone, strong-willed adventurer who prowls the house getting into trouble even at night!! She's outsmarted the child-proof handles and locks on her doors--and now cant be left to cry it out anyway because she got a nose bleed from just brushing her teeth. She has awakened them at 2-3AM with make-up all over her face, matchsticks pushed into the toothpaste tube, and popsicles from the freezer!

3-17

Kenna's bruises are turning from the awful black to green and yellow today--a good sign we hope.

Love, J

Thursday 3/18

Thank you for continuing to keep us in your prayers as we seek God's presence in my 2 year old granddaughter Kenna's illness.

Today she was acting pretty sick, vomiting, weak, pale and gray, sunken eyes. We took her early to her doctor appointment and the test showed that now not only were her platelet counts even lower, an almost non–existent 700, but her red and white cells were falling way below normal also.

A bone marrow test showed that she has aplastic anemia, meaning that she is not producing any blood cells. She is receiving platelet transfusion now and red cells tomorrow.

See http://medic.med.uth.tmc.edu/ptnt/00001038.htm

There will be further testing but there is a strong likely-hood that a bone marrow transplant may be necessary and the usual match is found in a sibling, which would be her 4 year old sister Carsyn.

Wrapped in God's loving care,

+MJ

3-18

She is getting platelet transfusion right now (Thursday evening)

The tests will show more tomorrow. It may happen that this is still a temporary condition from a virus. She's not having visitors because of possible infection.

They will test potential donors on Monday. No potential transplant donors among family members should give any blood before testing.

Friday 3-19

Thank you all for your prayers and notes of encouragement. It's hard to believe it's been less than two weeks since we first noticed that Kenna was bruising unusually.

She received 2 units of blood today and they feel she is strong enough to have the surgical implant of a port in her chest tomorrow. That will be used for the repeated transfusions she is going to need. they will also be trying some drugs that may work to "restart" her own production of blood cells. Once the cath is in place and healed, they can begin the first 4 day treatment of the medication. Then she may be able to come home until the next one. She also received the anointing of the sick which is a very strong sacrament of healing today from Father Leszek .

Her mom, dad and sister will be tested for bone marrow match on Monday. That would be the other course of treatment if this drug procedure doesn't work.

Secure in God's love,

+MJ

Saturday 3-20

Kenna's port went into her chest successfully this afternoon. What a blessing!! tonight it was such a simple procedure for the nurse to get the blood sample they needed, that Kenna slept through it---compared to the painful experience it has been of holding her down and doing multiple sticks to try to find the vein each time!! Now she has her arm free of the IV and will be a lot more comfortable.

She spends a lot of time and Momma's energy walking the halls in her little yellow hospital sock "duck feet", pushing her IV pole along with her. She came out of the recovery room saying "I wanna walk". Her favorite thing is pushing the big button to open the automatic doors. There is a very well equipped playroom down the hall from her, so that's a nice diversion also. Carsyn spent some time playing over there today--but it gets kind of wild when those two rambunctious ones get together and the joy bubbles over.

With grateful hearts and hopeful spirits,

+MJ

Sunday 3-21

Today was a quiet day at the hospital. Kenna slept a lot from the little bit of pain med she had following yesterday's surgery, but took several walks, had a good time during Carsyn's visit, and did some painting in the play room.

The cath is working beautifully. By the end of the day however she was running a bit of fever and has a cough, so a precautionary x-ray was taken and an antibiotic started.

It takes 20 matched donors to supply the platelets for one small child for a year. Since her bone marrow has shut down, she's already received 2 units of platelets and 2 units of red cells this week, so donating blood or platelets at your local center would be very welcome. She's at LB Memorial Miller Children's Hospital at least another week, maybe more.

Thank you that so many are praying fervently.

Living in hope,

+MJ

Monday 3-22

Carsyn reluctantly, but bravely, gave up some of her blood today, along with her mom and dad, to help her little sister. we skipped out to the play room and didn't watch their turn. The samples are shipped to NY for match testing. I don't know how long that takes.

Because of the fever yesterday, Kenna was not allowed out in the halls today near the other at-risk patients...another hardship for her because her favorite pastime has been walking. Her code for I've had enough of this, no more messing with me, is "I wanna walk"...just like me when I'm watching a horror movie. Poor thing, she's caught in a real live one!!

Fortunately today didn't have very much poking and prodding--thanks in large part to that cath. Still there are plenty of unpleasant meds to take and vitals to endure. She's getting a couple of antibiotics and some routine anti -fungal drugs. she hasn't had much appetite except for apple juice. I wonder if that is because it's one thing she has the power to say "no" to and gets her wishes respected!

She and mom got a refreshing shower--Kenna's first since arriving Thursday and boy, did she need it after all the indignities you can imagine in these last few days!! Then they both had a nice sleep all afternoon.

Sunday 3-28-04

We got a nervous moment when Adrienne and Carsyn were at Mass this morning. Daddy alone with Kenna could tell that she was feverish--which is a "doctor event" every time now. So I went from Sunday School over to church and got them so they could go home and call the doctor and await instructions. He said if Tylenol would bring it down, they didn't have to come in this time.(He decides depending on her blood count and recent meds, etc.) Fortunately it did, and rest of the day went well. this is going to be a long, rocky road---one on which we will hopefully learn better and better to rely on God's providence. Thanks for keeping us uplifted in prayer. MJ

Mon 3-29

Today was the first rather "normal" day in several weeks.

There still is a need for donors to get registered and typed for compatibility. Of the many generous people who have been to the Donor Center to offer their services for Kenna, so far we have been told that only one has been a match! Thank you very much for your efforts in going or in recruiting others...we all need to keep looking.

Gratefully, MJ

Wed 3-31

So now we wait and see. Kenna has had a bit of fever again today, and this time it didn't fade during the day. The doctor doesn't seem surprised. She got some strong stuff last week! She has her check-up tomorrow.

A few more A+ candidates are going to be blood typed, but so far we have not heard that any more have been found compatible for her antibodies. Here's a revised info sheet according to our latest understanding of the procedure.

Grateful for this opportunity to learn hope and trust,

MJ

Thurs 4-01

Kenna's fever went up to 102 today, and it was time to check in for her weekly platelet transfusion , so they decided to keep her overnight for observation and preventive antibiotics since she has no white cells to fight infection. She mostly slept all day. She was pretty cooperative once she realized that there REALLY would be "no pokies". We can't be grateful enough for the portacath that allows her to get all her IV and blood draws from the once-only slight needle prick.

Our wise Adrienne had her bag packed in the car, her clever hubby Chris got her signed up to a dial-up connection for her laptop--slow but effective--so she can continue working. They are settled in to what may be at least a three day course of treatment, depending on what the cultures show.

Aunt Kelley and Ama C are keeping Carsyn entertained. She had an outing to the Aquarium of the Pacific after preschool today. I was the hospital support and go-fer person all day since the Daddy has an uncomfortable cold. We have been blessed with many mercies during this challenging time, and we pray for the other children on the 3rd floor and their families we have been meeting, some of whom have been there for months and months, or years, and are facing very difficult odds.

In His loving care,

Ama B

4-2-04

Adrienne said that Kenna was pretty perky this morning. Just as I was arriving at the hospital at noon, she called and asked me to bring in more diapers in the right size because there had been several "code brown" as the nurses call them---and losing it the other way too. Maybe this is more than some of you want to know in my daily report!!

So the afternoon was uncomfortable. When she finally fell asleep, Adi went home for a refresher. I was NOT what Kenna wanted when she woke up several times, but she really does have something to cry about! then she'd quiet down and go back to sleep. When her Momma got back at 8pm she had just awakened in a pretty good mood and was having a good go at her dinner. We just never know from hour to hour. Now I wonder if she will want to stay up all night. The doctor says at least several more days of antibiotics and being fever-free before she can come home again.

4-3-04

Carsyn and I had a good time going to the children's gardening class at the Fullerton arboretum this morning. She's great fun now--so conversational and interested in everything. Four year olds have always been my favorite age to teach. Then we had lunch and did a little shopping before we headed over to the hospital. Kenna started to cry the minute I walked in--guess she was still mad from being left with me yesterday. We did some crafts together in the playroom until Kenna got over her crabby mood and joined us. Momma got maybe 15 minutes of peaceful sleep until a diaper situation forced us back into the room. Que sera sera...we'll try again tomorrow.

04-04-04

Laraine, who is generously using her weekends to edit the Parish Bulletin for Adrienne during her "forced vacation", said that we should put something with this date into a time capsule to be opened a thousand years from now when it comes again. Kind of puts the day into perspective.

No new developments on a Sunday. Maybe there will be word from the doctor tomorrow about how long this stay will last. Probably it is only one of many before this thing is licked.

Kenna was pretty crabby in the afternoon when I was there--able to give only Carsyn a few laughs. Adrienne is remarkably patient. It's obvious that grace is the only thing that could sustain her in this situation. Thank you all so much for the prayers.

Monday 4-5

Another day closer to coming home. the doctor wants to finish 5 full days of IV antibiotics, so they may get discharged Wed Morning.

They got a good night of sleep--before and after Kenna's mid-night cravings. The prediction was that the steroids would give her quite an appetite, but so far she hasn't had much in the day time. She woke at 3am demanding "sister's chips". they tried everything on the wing---popcorn, potato chips, cheese. Finally the nurse did the only thing possible...went down to the bottom floor cafeteria and bought cheese Doritos like Carsyn had been sharing with her in the afternoon! she was satisfied and went back to sleep. I don't think I told you that the night before there was a 3am clamor for a turkey sandwich, but that night Adrienne fortunately still had half stored in the fridge. Wonder what she'll "dream up" tonight.

Kenna is really coming to detest the hospital room. Because of the delicate health of all the children on her floor, she is confined to it when she has a fever and for 24 hours following. Glad to be out, they did a lot of walking today. When they are on their own 3rd floor, that means that Adrienne walks -- carrying her and pushing the IV pole. But today when they took the elevator and explored a bit of the hospital, Kenna was willing to walk there. The folks in the blood donor center were pleased to finally get to meet her. They had thought she was older. They have been overwhelmed with clients and have had to ask people not to come. But this is expected to be a long endeavor toward health, so hopefully folks will not loose enthusiasm now and will donate in the months to come.

The bone marrow testing results came in today. No match in Mom or Dad --and Carsyn was the least match--a total opposite. that means other family members are not likely either. The best bet would come from the national donor registry---but the doctor says we won't need that...this drug therapy IS GOING to work!

I was so tired yesterday--all catching up with me. So today I took the time to see The Passion with a friend who hadn't gone yet. It really moved me in a yet a different way this time. His mother's love is so tender and trusting in seeing her Innocent One suffering. Confident that God will make something good come from this inconceivable event. Surely she will help us to see that He has great plans for the tested and strengthened faith of Kenna and those who love her.

With Mama Mia & Her Son,

+MJ

Tuesday 4-6

They're home again!!!

They got their walking orders about noon , and had the paperwork done and were waiting at the curb for me when I got to the hospital -- they couldn't wait to get out of that place! Kenna was finally glad to see me, I got waves and a big smile. Now hopefully they get to stay out longer than 4 days this time. Monday is a check-up, and a transfusion will be likely on Tuesday, depending on her counts.

Carsyn was thrilled to see them. I took them for a walk first thing so Mom could get a shower and then they played happily together all afternoon--when Kenna wasn't eating. At the hospital, in the middle of last night she woke up screaming for McDonald's (as Aunt Barbara and Sarah had brought her for dinner) and "I want to go OUT SIIIIIIIIIIIIDE!" What a blessing that after 6 days of captivity she finally got to get out into God's beautiful sunshine today.

Adrienne asked that I extend thanks to all who have sent notes and gifts. Depending on what stage they were in treatment at the time, she's afraid she can't even remember who sent what, but appreciates them all and the love they represent--even though you probably won't hear from her individually. This has left a lot of catching up to do. Chris has been working as the "office temp" in their home printing business, but I'm sure He will be glad to have Adrienne back on the job.

In great gratitude,

+MJ

It's10:45 and Kenna just woke up and came downstairs looking for her early mid-night snack---of mac and cheese!

I was just thinking...we modern grandmas don't keep a wallet full of photos anymore...they are in my camera phone!!

Holy Thursday

They say no news is good news...Nothing much new to report today...except that Kenna made the front page of the local newspaper in Long Beach . Carsyn was excited about that. See the link. 

Adrienne tells me that Kenna  wakes up asking for Mcdonalds and yellow Slurpies, and ends the day looking for Mcdonalds and yellow Slurpies. I guess the steroid-induced cravings have kicked in now. 

Today we begin the celebration of the Lord's Passion, Death, and Resurrection. We have had a little tiny taste of the suffering and carrying of the cross are anticipating the rising from this illness with Him. It is such a gift to go through this with a God who has "been there, done that" for us and with us.

In His love,

MJ

Good Friday

Adrienne had a phone conversation with a mom whose son was diagnosed with aplastic anemia at age seven, and he is now getting married. But it was a long and tenuous road to recovery. After three years, and within a day of receiving a bone marrow transplant from a donor in England , the last test on the very day before surgery showed a little activity in his own bone marrow. This is likely to be a very long recovery. On this day when we traditionally venerate the cross of Christ, expressing gratitude to Him for the wood upon which He won our salvation, asking Him along with the community to help us embrace our own, it seems particularly meaningful this year. Thank you for supporting us with your prayers as His Mother did Him on that difficult journey.

It was so good to hear Kenna laughing today. She has had such a wary look even at home. She reluctantly was able to let Momma leave her with me for a couple of hours and we enjoyed a walk to the park rather like old times. It's slow going--she doesn't have the same energy--and I had to stick to her like a shadow so she wouldn't try anything that would bruise her. But she and Carsyn had great time exploring and running free--untethered from that IV pole. Hope she sleeps well tonight--I know I will!

Love, MJ

Easter Monday

It was lovely to have a fairly uneventful couple of days this weekend. For Easter, the family got to enjoy our first Sunday dinner together in weeks. Kenna was running just a bit of fever to watch on Saturday and Sunday. Today was her scheduled doctor appointment at 8am , so they will do culture tests on the sample they took to see if trouble is brewing.

In the meantime, her counts were down, so transfusion was in order. The plan was to do it tomorrow. But just about the time that Adrienne noticed that there was swelling near the site of her portacath that they had accessed today and called the doctor, the hospital called to say that they had room to do her input today. So we went back over to Long Beach about noon and just got home at 8pm. Carsyn was great--just willingly went to stay with a friend until her other Grandma got back from errands to take care of her. Daddy took her to the mall for dinner when he got home from work. I go along for moral support, driving, parking, food runs, etc. since Kenna can't be left alone with her IV and makes it very vocally clear that she won't be left with just the nurses.

The transfusions of platelets and red cells went fine. The "day care" infusion rooms don't look so much like hospital rooms, having colored walls and recliner chairs rather than beds. Kenna is starting to be more accepting of the prick (the single quick needle into her chest) now that she is seeing that we really are telling the truth that there will be "no pokies" ( that painful probing around in her veins for an IV). She says to the nurse "You done? You done?" She is so sweet about giving her arm for the blood pressure cuff and very nonchalant about lifting it up for the underarm thermometer.

The swelling and bruising we had noticed didn't get any worse, so perhaps with her platelets so very low at 4,000 (normal is 350,000 to 400,000), the seat belt had just irritated it. Her fever was still up and down, but they didn't make her stay until the lab results show that she must get antibiotics. All in all a pretty good day.

Grateful for all the graces, great and small,

MJ

4-13

Today is Chris Coerper's 30th  birthday.one he'll remember, I'm sure. Not because of the outrageous celebration, but because of what's going on in the life of his family. It was a great gift to him just to have all his girls at home and for Kenna to come running out to greet him with Carsyn, in party hats, when he came home from work!

The fever, up and down today, is up again tonight to 102. We'll see what tomorrow brings.

Watching and praying,
MJ

4-14

Even with Tylenol at bedtime Kenna's fever climbed to 104 in the early morning before her folks woke up to check on her. So off to the hospital again at 5am. Actually Adrienne is relieved, in a way, that it went up high enough to send them over there where she doesn't have to keep vigilant and wondering about what might need to be done. Now she can rest easy because the nurses come take vitals regularly. She has her laptop and can keep up with her work from there. So there is a gift in every event.

The culture showed positive for a common contagious virus that would only be uncomfortable like a cold, if Kenna were healthy. But with no immune system, she is fair game for bronchitis or pneumonia complications, so needs to be monitored for a few days. All the kids on that floor are in compromised health ,so she is again confined to isolation. Her spirits are much better
this time though. The irritable after-effects of the powerful drug treatment she got are wearing off, and the nasty steroids are being tapered off, so she is much easier to reason with. Another blessing.

Keep up the prayers that we are alert and learning the life lessons this is all able to give us.
MJ

April 15, 2004

This morning Carsyn and I went to San Clemente to meet my sister Ann from San Diego. She had a lovely Prayer Quilt for Kenna from a friend's church congregation. It is blessed and then the knots are tied by individuals as they say a prayer for her. The family down there also all had a chance to take part, so now it will be completed by those locally who want to participate.

Kenna's fever is gone, but she remains in isolation receiving precautionary anti-biotics at least through tomorrow. But our sweetie who got swept away by all the nasty drugs is returning. I spent the afternoon playing happily with her while Adrienne went to the dentist, and she was calm and cheerful again.

If you are curios about Kenna's illness or want to potentially help her or others in similar situations if a bone marrow transplant becomes necessary, take a look at this site and consider getting registered now. The doctors feel there would probably be a good chance for a match for Kenna, but they say there is especially a shortage of non-Caucasian groups in the registry.
http://www.marrow.org

Love, MJ

4-21

I was so tired that I sat down, typed the date, paused to reflect on the day, and kept nodding off in the chair. So now it's Thursday morning and I will try again.

I'm in charge of Carsyn for the next few days because the rest of the Coerpers have all gone to a family reunion in Arizona.. We visited the hospital in the morning  and she got to take a walk to the cafeteria with mom while I tried to be entertaining for Kenna.not as good as Momma, I'm afraid, but we got along. On top of everything else, she's got a nasty intestinal thing going on now that they are trying to figure out. Carsyn played with her good friends while I went to a wonderful luncheon, and then she went to work with me at Religious Education from 3 to 8. She was a doll. I really enjoyed spending the day with her and putting her to bed. What a little Miss Personality with everyone. She is just amazing-it's got to be the shower of grace.

Thursday 4-22-04

Carsyn was a little reluctant to go to preschool today, but once we got there, and I sat in for a little while, she was happy to stay. I got to learn a couple of new songs about God's love.
We made our promised trip to the 99centOnly Store on the way home so that after lunch we could take a new toy over to Kenna. The mechanical train she picked out was a big hit.
Kenna's on a handful of antibiotics-the nurse listed them all and I lost track-but she seems to be doing better today. Mom and Carsyn got to have a walk together around the hospital. When Mommy started dozing off and Kenna seemed ready to, we left them to sleep until meal time (which Kenna did-and way past, so Adrienne got some quiet time.)

Daddy took Carsyn to the mall for supper and then stayed home this evening so he could fill some customer orders for Adrienne, and I could go to my exercise class and out to dinner.
Thank you all for your emails and remembrances. They are appreciated even though we can't manage respond to them all individually.

Here is a story from the LA Times today about a girl with the same condition, who is at the point that she needs a bone marrow donor and hasn't been able to find a match of Asian descent. Maybe you know someone who might be able to help.
http://www.latimes.com/news/local/la-me-kailee22apr22,1,3175609.story?coll=l
a-headlines-california   or attached below.

4-24

Doing pretty well. I've been enjoying the time with Carsyn, but it's limited my e-mail correspondence!

The doctor says that when Kenna has had 10 days of the antibiotics and stays without fever for five full days, she can go home. We're on day 5 of the antibiotics and have had no fever for 3 days.and counting.

Kenna has had very little appetite and also throws up frequently. She had been ok since yesterday, so Adrienne took her for a walk -but the people in the cafeteria got an unpleasant surprise! Just being on a regular antibiotic can be upsetting to the stomach-she's on 4 strong ones!

Tonight Daddy stayed for a nice long visit because she was in a rare extended good mood-they have been so fleeting lately. Carsyn and I went to evening Mass, and did a bit of shopping. She helped me pick out some new clothes-size 6x now(and nothing in military green or from the boys department)-and we stocked up on foods she likes from the market-apples, watermelon, hotdogs, yogurt and cereal. Even she is getting tired of McDonald's!

I know God's grace is sustaining all of us because the frustration and fatigue only occasionally nibble slightly at the edges, but have not gotten a nasty bite, so there is much to be grateful for. Learning to trust one day at a time,
MJ

4-26 -- Week 8

Kenna had a wonderful afternoon visiting with her beloved Grandma Cheryl, who has been traveling and was sick before that, so hadn't seen her in 2 weeks. Then also her Great Grandpa from Palm Desert stopped in-what a blessing that she was in a very playful mood at the time that they came by. That changed very quickly when in short order her IV line broke, her mouth started bleeding again, and then she began running a fever. Such is the nature of this precarious existence. So tonight she has platelets ordered up and is taking Tylenol.and I guess the countdown to homecoming is abandoned. The grace of endurance needed for all, especially Momma and baby. Carsyn has been so flexible. She started out the day with me, then Aunt Kelley and Ama Cheryl, then back over here to me until Daddy picked her up. She even went to sleep WITHOUT PIGLET because he was left in my car when I went to a meeting tonight!

Afterward, I took Piglet back to find Daddy busy printing and boxing the wedding program and map orders Adrienne had completed and emailed to her office at home. So I "cooked" him a TV dinner from the freezer at 9pm. I wonder if she'll get the platelets that friend Linda gave on Friday? It takes a couple of days to process them. I heard over the weekend when I was there that they were short for another child who was in need of them-we are very grateful to all who have been tested even if it is to help a fellow patient of another blood type on that difficult oncology/hematology wing. They are all so precious and heart wrenching.

God's ways are so mysterious-but I choose to believe that He has loved us into existence, and through His Son continues to love us even more into sainthood through these events. So many lives are being touched. He will know when is the right time to say "It is accomplished" and return her to health. We experienced it with my husband Bill when he had an even more impossible diagnosis 12 years ago.

MJ

4-27

Since the fever Monday, Kenna has been getting an additional antibiotic and is normal today. That means she may be permitted to leave confines of her room tomorrow to walk the halls or visit the playroom. Carsyn is looking forward to costume day on Thursday.

When we visited today, Carsyn entertained Kenna with her mom in the room, and I took blankie to the local laundromat for a much needed freshening. During that time they had a surprise visit from the fairy queen who made them honorary princesses with tiaras, wands and rings. The ceremony included a photo with one of Kenna's doctors, so they may wind up in a brochure. Sorry I didn't get out my camera when I got back. Volunteers often do what they can to brighten the days over there.

This "Quote of the Day" from my faith sharing community seems to fit exactly the events we are experiencing in these weeks:"God must allow so many wounds, so many hard moments, so that you feel weak and through this, you are open to grace."  (Gift of Faith, pg. 58)
http://www.armsofmary.org/quote_arch/2004_04.html#000194

May we welcome His loving will,
MJ

PS Carsyn is fascinated by soldiers. We had to stop at the new Westminster memorial park when we went to the library today.

April 29, 2004

This morning after I dropped Carsyn off at preschool I went over to the hospital to see if Kenna would let mom leave. She was still sleeping , so Adrienne made an escape .as the old saying goes: it's easier to get forgiveness than permission. When she finally woke up, she wasn't too pleased to see me, but we had a good time together and even got to visit the playroom to do the day's craft project.

All was going well until I moved the bed tray and the wheel caught on her IV tubing and snapped it off at the connector!!! Poor Kenna, Poor Ama!!! My consolation was that Adrienne had whispered to me that this was the day the needle was going to have to be changed, so Kenna was going to be re-stuck at some point today anyway. I just caused a new sterile needle to be inserted in her portacath right away when Momma wasn't there. The nurses moved quickly and it was all over in a flash, so we were happily absorbed in a computer game on Mom's laptop when she got back.

Carsyn had a wonderful surprise getting Momma to pick her up from school and take her on an outing for lunch with some friends. All the recent cultures, labs, chest x-rays, etc have been negative, so the thought is to stop the antibiotics tomorrow and see how she does for 48hours. Maybe they'll be home again in a few days.

Hopeful, MJ

May 1, 2004

How quickly everything changes. And what happened to April??? Yesterday Kenna enjoyed a trip to the playroom as a princess.

Today it's hard to say what's going on.nobody knows.
Kenna got a red unit today and that usually energizes her. When I was there this afternoon giving Adrienne a break, she was listless and her blood pressure and heart rate high. That might be from some new meds she started the other day from the GI doctor because she hasn't eaten in a couple of weeks. That was being attributed to coming off of the steroids, but now it's been too long for that. The few bites she's willing to take, she usually throws up.  She's pretty good with the liquid oral meds if they give her Ativan in her IV awhile before.
Her x-rays have shown a shadow in her chest so they had also decided to do a CT scan, but since that requires at least 8 minutes of lying perfectly still, sedation seems in order, so they are waiting for an anesthesiologist on Monday. She'll also have to get a regular IV for that--more pokies.

At least so far she doesn't have fever, but we are waiting to see.Daddy and Carsyn had a nice visit playing with Kenna yesterday afternoon, and now last night and today Carsyn's been running a temperature!

He was glad of the diversion of installing a new kitchen faucet for me because mine broke this week, the day after the kitchen drain backed up and needed rotor-rooter. He's now sitting with Adrienne tonight waiting on more culture results, and his sister Kelley is home with Carsyn.

I'm asking Mary to keep our eyes on the promise of the Resurrection like She did.
MJ

May 2, 2004

One day at a time.the good with the bad.now today was just as good as yesterday was difficult!!

Looks like the guess that the GI med might be the problem was right so far. She was changed to a different one (that Bill took when he was on chemo), ate more than she has for a quite a while, and didn't throw up all day. Her blood pressure was back in an acceptable range and she was in a pretty good mood all day. She got unhooked from her IV for a couple of hours, got a nice bath and we took a long walk all around the hospital grounds.

Carsyn told Daddy that her ear hurt this morning so he took her to Prompt Care. Now she's on an antibiotic and they didn't come to the hospital, but went for haircuts together. I saw the cute photo but didn't get a copy for you yet.
Today gratefulness comes easy~~Begging to be grateful for every grace, even the difficult ones.

MJ

Monday 5-03-04

Although Kenna's CT scan has raised more questions than answers until all the specialists put their heads together tomorrow, it went well today. They mercifully gave her some knock out drops in her portacath before they started the other IV, so the experience was not another nightmare for her. She spent the rest of the day happily after she slept it off, and even had an improved appetite. She ate a whole banana for lunch. The scorching heat wave we are having is unbelievable for May, but sure made for a pleasant dusk walk out to the bench in front of the hospital in the breezy time of day, to gobble up 6 McDonald chicken nuggets from Aunt Barbara for dinner. Carsyn is still congested, but improving. She seems to feel fine. Boris became an outside cat since Momma is away and since Carsyn got a couple of little bites this weekend, the bug man is coming to spray tomorrow while the cat goes to get groomed and medicated.  Her concern today was where do fleas come from?  And why do they bite? And how do you avoid them? And why do they like blood? And where do they live? Etc??? Etc??? Etc??? We stayed at my house until it was time for me to go ever to the hospital. A sheet to cover the sofa finally satisfied her that she and her Ama Cheryl would be safe for the rest of the day.
Little trials and big trials all help us to realize that this life is more that we can handle on our own. Thank you God for coming to help us in doctors and exterminators, in sofa covers and Aunties.
MJ

Tuesday 5-04-04

Well, they don't know what they are seeing on Kenna's CT scan so the decision is to have a thoracic surgeon go in tomorrow afternoon to look and get a biopsy. Your prayers are most appreciated. Today was a good very day for her. She is finally eating pretty well and didn't even fuss when Mom left her with me for an hour to go do some errands. We walked all over the hospital and played happily in the playroom together. I'll save my waning energy to fill you in tomorrow after the surgery. Asking Mary to mother us through this since she has gone before us through difficult times with her Son. MJ

Wednesday 5/5/04

I know you are all concerned and anxious to hear. Thanks for your prayerful support. The doctors are mystified and we are grateful, but frustrated. Another challenge to our faith.
Kenna's surgery went well today, but the surgeon couldn't find anything!!! There has been a shadow on her chest x-rays, darkening each time, and the CT scan showed something "big and juicy" where a gland ought to be. But today in the procedure everything looked very normal and healthy. That's wonderful, but raises more questions, and leaves Kenna very uncomfortable again with a drain tube for several days or more when she was doing so well the last couple of days. Is this unnecessary surgery or a miracle? Nothing happens without God allowing or willing, so in my fatigue and weakness, I leave it to Mary to"ponder" for me how He is present in these events like she did in her life with Jesus.
MJ

5/6/04

An exciting and encouraging development today. There is a certain marker in blood which can indicate bone marrow activity. Kenna's level has been 0 since the beginning of this. Yet today when a new Resident came in very early in the morning with the latest blood test to review her case, he said in an off-hand way, "Well, her ANC is only 45." Adrienne was suddenly wide awake. "What? What? She hasn't had any for weeks!" So Daddy got a 5am wake up call with that news! This week is the 6th week since the treatment, and the earliest that they said we could maybe start seeing some results. We can 't help but wonder if the assault on her body of this surgery triggered it to begin to fight back.

Still no results from the biopsy taken yesterday.  Kenna is being kept fairly comfortable with morphine. She asked to get up and walk the halls several times today which the nurses say is unusual for a child right after surgery. They say her on and off fever is not unusual, so she is not confined to her room. Here's a photo from this evening. Now it takes 2 adults, since besides the IV pole, there is a drain tube and pump to carry.

Carsyn's preschool had a Mother's Day tea today. We had no idea until Aunt Kelley dropped her off and quickly made cell phone calls to the grandmas. Carsyn and I sat next to her special friend Colby for the cake. Ama Cheryl joined us in time for a photo with the special gifts she'll take to Momma.

Grateful for the surprise blessings in every unexpected event.
MJ

Walk after Surgery

Friday 5/7/04

A lot of walking the halls today, Mom, not Kenna, and at 35 pounds she's an armful. Especially when you have to use one arm to push the IV. The nurses rigged a way to attach the little pump to the IV pole, so it's not quite so complicated. Kenna agreed to let me carry her one session, and to riding in the stroller for one of the others, and she even walked one herself. That's the best.

The surgeon came to check her dressing and constructed a creative smaller one around the drain tube. Last night the nurses did their best to repair the damage since Kenna managed to pick off the entire bandage --from her back-- while the exhausted Momma was fast asleep!! Remember this is our
inquisitive nightwalker who gets into everything.

I was there when the doctor came in and still I don't quite understand the findings except that they were happy with the biopsy report which showed normal thymus tissue, but just not where and the size that should have been expected. I guess I need visuals. The ANC was down to 20 today. The next doctor who came in said that there is likely to be a lot of fluctuating and they don't get excited until it hovers rather consistently around 100, and that this is yet to be a long treatment program. But it still sounds like good news to us.

Carsyn and I cleaned a bit at her house this morning. She was great with the vacuum and the mop. A good thing for her mom to know. But we were too tired by time we got to mine, so we watered the yard and then took her to Barbara' s to swim while I went to relieve Adrienne. Therefore, mine remains a disaster area. I'm writing to you another night with clutter all around and half-started tasks undone. This has sure realigned priorities. Already if I reread, I can see things that have gone fuzzy as the days and weeks blur together and our fatigue increases. It just seems more important to put this into a written record and to do some spiritual reflection so grace can abound from this whole difficult experience.
And now I'm going to head to my unmade bed.
MJ

5/8/04

Carsyn hasn’t been asking for Momma, but says that she misses Kenna! Today Carsyn and Daddy went to have lunch and a nice visit with Mom and Sister. While they were there the surgeon came in and removed the drain tube, so then when they got her port hep-locked (temporarily capped off) they could all go walking with no IV pole. A family outing exploring the halls and riding the elevator!

This was the surgeon who actually did the operation, and who has been out of town since. He was explaining to the parents that he still has concern about the area that is seen in the pictures but he was unable to locate in the way he went in. So there will yet be more discussion among all the specialists and the possibility of attempting a different assessment procedure. Again another event that cries for trust in a plan beyond our understanding.

Kenna slept most of the time I was there this afternoon and Adrienne got a peaceful shower. Kenna awoke ready to walk again, so Momma and I pushed the stroller all through the halls and grounds. The cafeteria was not very busy on the weekend at dinner time, so we are tentatively planning to have a Sunday family dinner there for Mother’s Day…asking for the grace of taking and enjoying one day at a time as they come and with whatever they bring.
MJ

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

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

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

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

Thursday 5/12/04

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

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

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

Tuesday may18, 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

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

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

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 Slurpy 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

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

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

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

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

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.

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

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

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

Tuesday - June 22, 2004

Kenna’s counts continue to improve. Today she had her weekly checkup and the ANC had tripled to 988. Low normal is 1,500 and children with 500 are considered able to attend school!

Both girls have the nasty cold still lingering. Carsyn sounds terrible but seems un-phased. Kenna’s congestion is making her (and therefore also her Mom) miserable, but mercifully there hasn’t been a fever this time to send her into the hospital. It’s wonderful.

I went to the appointment and then stayed over to watch the girls while Adrienne got some errands done. Kenna also has sores in her mouth that she keeps toying with, but is not bleeding yet. Tomorrow is likely to be platelet transfusion. She used to be getting them one day shy of a week. Now the pattern seems to be one day over a week. That looks to us like a good sign too.

With joy and hope,
MJ

June 23, 2004

Today was devoted to platelet transfusion with Kenna pretty crabby and unhappy with the whole procedure, probably because the viral congestion added to the swollen bleeding gums is so uncomfortable. It’s so much easier when there are two of us there to help each other comfort and distract her.

And there was a bit of a disappointment for us as well. The blood test done at the hospital today was very different than the finger stick screening that Kenna had yesterday. Though still higher than last week at 392, her ANC was not nearly as positive as it was reported yesterday. Evidently at the doctor’s office the numbers in one of the elements that make up the formula to determine it were recorded inaccurately. What a roller coaster ride this it. I’m grateful to have spiritual companions in Jesus and Mary to help keep us focused on the Resurrection like they did through the ups and downs.

She received platelets reserved for her from a designated donor just before they were to be released into the general availability. Thank you to all who are keeping the supply steady. Her red counts were also very low, so we will likely be back on Friday or Saturday to replenish those.

Thanks for keeping us in your prayers. The graceful support sustains us.

MJ

Monday June 28, 2004

We spent a couple of hours getting Kenna’s blood test and waiting for results on Friday and then the better part of Saturday getting red cells that she needed. Even though it’s a long day, it’s much more pleasant when she’s being cooperative like this time. The blood she received was again from a designated donor which is less apt to cause complications for her, so thank you very much to those who are keeping her alive with your generosity and your recruiting of A+ donors.

Today was the weekly 8am blood test to monitor the levels of drug in her system to see if the dose needs to be adjusted. It has to be done early in the morning and sent out to a special lab. The CBC that they ran while she was there shows that her counts are continuing to climb. When we asked the doctor if this was a good sign, she just hedged saying it’s very early in the treatment. We have to be prepared that this could be a false start and the course will be several years as predicted. The doctors and drugs are instruments, but only Our Father knows how to best use this difficult situation and when it’s saving grace will be accomplished.

Saturday
July 3, 2004

Remember the photo a couple of weeks ago with the chocolate residue all over Kenna’s face? This week she was happily coloring one minute and had her face and arm covered in blue marker the next. It faded with soap, but doesn’t come off. Her Daddy is calling her Smurf girl.

She again has gone a couple of days beyond a week before needing platelets. That’s great because she used to need them a day or two shy of a week. Knowing that she would be about due on Friday, we took her for blood test in the morning. She was at 6,000, but not bleeding yet, so they gave us an appointment at the hospital for Saturday at 3pm. By 7 pm Friday night though, she was definitely in need of a transfusion and the medicine intended to control the bleeding of her gums was not helping. So with her looking like a blue vampire, Adrienne and I took her over to check in.

Unfortunately, this week there were no designated donor platelets available for her. And it started off as a trying experience, because there was trouble accessing her port. It seems that the tissue around the site is getting softer since it never gets a chance to heal and the device is shifting. So the first attempt was not successful and we had to go through the whole trauma of holding her down to get sterilized and stuck again. once she was all taped down and got to walk off the stress, she was pretty congenial and we just watched movies for the evening. We finished up and got home about 1am.

Now it should be a peaceful weekend, barring any more of her tricks… maybe even able to enjoy some July 4 festivities together. Have a blessed one, with grateful thoughts for our armed forces.

Monday, July 5, 2004

We were blessed with a lovely weekend.  Adrienne took the girls to the Huntington Beach July 4 parade with some friends. Then we all joined a party later.  Carsyn enjoyed the pool and Kenna had fun tossing the beach ball back into the water from the sidelines. This is the first time in months that she has gotten to mix with other kids except at the hospital. With her counts rising gradually and her platelets just refreshed, it seemed safe enough to give it a try.

When we were at the hospital Friday night, we met a mom who had just given birth the day before and was there with her 2 year old who has been in treatment for 2 months, so all three of them were patients that night! We only got to speak very briefly because she got a phone call, but she had such a positive attitude. She gave Kenna a lovely picture of Jesus guarding a child’s bedside.  This poster was taped to the door, along with postcards from this website:

~~Ministry of Healing~~
Often your mind may be clouded because of pain.
Then do not try to think!
You know Jesus loves you.
He understands your weakness.
You may do his will by simply resting in his arms.

www.hartclassics.com
Nathan Green distributed by Hart Classic Editions

Monday July 12, 2004

A whole week no crises to report. Thanks be to God. Kenna had a visit to the doctor last Thursday to check her levels and was doing well. So Adrienne and Chris decided that they could go ahead with their tentative plans to get away—together—alone—just them—for the weekend. With cell phone charged up to be available for emergencies, they left me with the girls Friday night and took off for 2 nights at the Disneyland hotel. It’s only 20 minutes away, but a world apart.

The girls and I had a great time together, but I never got a chance to even turn on the computer. Two of my sisters from San Diego came with their gentle dogs to help entertain the girls on Saturday, and Barbara and her roommate stopped by for a while. Before we knew it, Sunday morning arrived, and Mom and Dad were home. Kenna was a bit pale and less energetic so we knew her red cells were low, but her gums were doing ok even though it’s been ten days since her last platelet transfusion. Amazing.

Today we took her for her checkup fully expecting to spend the day getting“refills.” But her counts were still not down into critical levels, so we have an appointment for the hospital infusion tomorrow. Even the conservative doctor said perhaps her body is responding to the treatment! Much to be grateful for.

Monday July 20, 2004

Last week Kenna had a cough, so she had an x-ray on Tuesday when she was at the hospital for transfusion. The results were ok, but it hadn’t improved this week and she’s a bit wheezy. Today at her weekly checkup the doctor sent her for another one, and started her on an antibiotic and an inhaler. The result of today’s was not bad either and she has no fever, so we remain hopeful that it will begin to improve without serious complications. We’ll see how getting her to actually do the breathing treatment will go!!

The great news is that her ANC  still  remains hovering above 1,000  and that she continues to have some white count. White cells fight infection and are not transfusable, so they have to have been made in her own body. This is such a cause for gratitude and rejoicing. Keep up the prayers.

I forgot to tell you that last week she was again blessed with designated donors for both her red cells and platelets, which they didn’t have available for her the week before. So thank you, thank you, to all who are being so faithful about donating, or in encouraging other A+ donors for her. We can’t thank you enough. She looks so normal and healthy between treatments.  It’s an awesome and spiritual thing to contemplate her complete dependence on life borrowed from another.

Saturday July 31, 2004

Another peaceful week. Kenna still has the congested cough. It’s lasted a long time now, but gratefully it hasn’t worsened to put her in the hospital. The meds seem to be slowly helping. She tripped over the garden hose and gave herself incredible black shiners on both knees, but those are lightening up, too.

Today Chris Coerper’s brother Kevin was married to Jenny, so Carsyn and Kenna were flower girls for their uncle and new aunt. What pros! Those of you who know Carsyn will appreciate the amazement that she allowed her hair to be gathered back and wore her dress with great grace. She seemed to“enjoy being a girl” for the day. I’ve attached a few photos.

August 18, 2004

It's been several weeks now since I've written an update. I've lost track of just how many I've missed. Things have fallen into a pretty steady routine. Kenna goes early every Monday morning for a blood test to check the level of medication. The Cyclosporin she takes is a strong immune suppressant drug
and can have serious side effects, so the dosage has to be monitored closely, as well as her counts to determine the need for transfusion.  And it's nasty stuff to take besides.

Kenna and Carsyn were in another wedding this weekend for their Cousin Jeremy and new Cousin Julia in San Diego. He is Kenna's godfather, but they didn't even get a picture with him. Kenna was in such an irritable mood that she wouldn't stay still for the camera. She fell asleep immediately following the ceremony and slept all the way through the reception at the zoo. The rest of us had a lovely time.

It wasn't until Monday morning that we found out why the whole weekend was so difficult with her. The level of that powerful drug was extremely high, but we hadn't even considered that, since it's stayed within the acceptable
range for so long. An adjustment has brought back our little sweetie. She's going again tomorrow for a re-check. This chronic condition is going to continue to take it's toll for quite a while to come. We are grateful for the prayers that sustain us.

September 14, 2004

August was busy with several little trips for me, but no email for you, so I 'm sure you have been wondering how things are going for Kenna and the family. She's thriving and growing, full of conversation and mischief, thanks to the continued generosity of her blood donors. The norm continues
to be a transfusion of platelets every week and reds every two weeks, give or take a few days. Since it's best for her to avoid much contact with contagious conditions, they keep a pretty small circle of activities. Carsyn happily started Kindergarten last week without getting her MMR immunization since the live virus in the house would have been dangerous for Kenna.

Her ANC level (the number that indicates production of new cells in the blood) has fluctuated greatly over the last few weeks-- an encouraging high of over 1000 and then back down to an appalling 53. It can be misleading since a number of factors might influence it, so the doctors remain optimistic, but it's very hard for eager family to not take the numbers too
seriously.

Next week, however, we should have a more definitive answer to the question,"Is she getting better?" With the six-month mark completed at the end of this month, another bone marrow test has been scheduled for Wednesday, September 22. She will be sedated and a small sample will be taken from her hip. Then a decision will be made if she needs to undergo another round of that difficult four-day ATG treatment that caused so many complications, and weeks in the hospital, last spring. When aplastic anemia was diagnosed in March, the results showed that her marrow "looked like lace." We're hoping for a better result this time and appreciate your prayerful support.

Go to Round II

contact us: Adrienne & Christopher Coerper