Journal History

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Sunday, September 27, 2009 9:28 PM CDT

Well, hopefully I can add a couple new pictures since I took some at the Craig Biggio luncheon , just 2 weeks ago. We had alot of fun . Jake hit a few pitches off Craig , we ate hot dogs and nachos in the 5 and 7 restaurant...we were very fortunate and sat in the Bagwell booth. Surely we would have preferred the Biggio but hey we got a really good spot, anyways. Jake got Junction Jack's signature on a card and Biggio's signature on a ball! He got a backpack with some goodies and best of all ( according to Jake ) he got to miss school!
Jake is doing well in school , making average grades so far . He seems to not hate it as much ...lol , this year. We got one of Sam's (sister) old teachers . She came to see Jake in the hospital 9-10 yrs ago ( when Sam was Jake's donor) . That really meant alot to us . Teachers never get enough credit for all they do . My advice : everyone tell/ show your teachers how much you appreciate them !!
Hmm let's see , Sam's back at home ...needs a job ...driving me crazy . Guess she finally figured out that making it on your own is a little tough. Richie is here too ... His job is having cut backs and he's looking around a bit but he's ok so far . Jerry watches the hummingbirds alot...lol ( we have lots of them )and goes to the deer lease and works . Me,... I still have a class that I need for my Administration Cert., with that , work and these messy/hungary kids, I keep plenty busy!!!
Jake has annual visits at the hospital this week ... 9 years remission this past Friday ...amazing !!!
He has to do all the blood work , get a flu shot , Bone density tests , kidney function testing , Pulmonary function testing , ekg and echo of his heart ...hummm I think that's it ...lol it will be a BUSY day for sure .
That's it for now , I'll write again when there's something to tell !!! Thanks for checking on us ,
Danette ( AKA proud moma !!!)

Saturday, May 2, 2009 8:35 PM CDT

Ok so , I already know I don't update enough but I'm trying to get written the important stuff. After 10 years in this battle , we have little to talk about (thank goodness) . Jacob has a few issues that are being examined for evaluation.....here goes...I posted a new picture of JAKE,taken (April 2009),last month.It was taken in the field next door!
Jake is doing really well . He is making good grades in school ( regular instruction ) . He made a 100 on the TAKS test. I am very proud .
He got the BOSTON SCLERA LENS in January . I cannot say enough about how much they have helped Jake deal with the severe dry eye issues. I highly recommend them if you have experienced limited relief from other therapies. As you can see from the picture he has open eyes now and doesn't sqiuint all the time.What has been an ongoing battle for the past 7 years or so is now becoming much more feasible to deal with.
*** Jake's Lung issues are unknown, we went for several phases of testing and all they can say is that there is something not right with his lung function but can't determine any treatments or therapies to help. My understanding is that we wait and see if he has adverse problems ( like shortness of breath etc. )For now , he seems fine but then again he isn't your most active kid ( isn't interested in sports, just video games !!). We will be evaluated yearly for that unless otherwise instructed.
*** Jacob started on a low dose of thyroid replacement after a year of watching with no change ,The therapy consist of a small pill taken once per day with seemingly no adverse side effects. He has to be retested later this month to see if the dose is correct for his condition.
*** His kidney function remains not quite normal but stable and ok .
*** I finally am finished with my degree in early childhood Education and graduate May 15 th . After a detour in the Nursing program,and lots of time off due to medical and personal circumstances , I persisted long enough to "get it done " !!!
*** Jacob will be going 4th grade soon and I couldn't be more thrilled with how much he has overcome in his short life .
This Wednesday evening , Jake and I will participate in a Kids walk in honor of a girl that we met years ago . She played softball on my daughter's softball team . Her dad and my husband helped coach all these 9 and 10 yr.old girls .A few years later she subsquently was diagnosed with cancer and died in Dec 2007 ( age 15)...but not before inspiring many to believe and achieve nearly impossible goals. Chelsey Campbell , here's to you ....
P.S. I 'll try to update more pictures soon.
Blessings to all,
Danette

Monday, June 4, 2007

Hi all,

I'm going to post a quick update here ,just to let you know Jacob is doing pretty well these days .... Although, we are just getting by , after a recent " relapse scare " . Thankfully it was just a scare and actually turned out to be a strep infection that was misdiagnosised as a viral infection for about a week . So, after spending all night at the ER for high fever and my cell phone getting ruined by the X ray equipment at 1 in the morning ...ughhh ( does the choas ever end ? ) The blood counts came back idicating a viral infection AGAIN , they sent us home to wait it out , then got a call from Jake's Peditrician , who took cultures last week that came back positive for strep !!Thank GOD , finally a reason for the 102- 105 degree temperature he has had for the past 7-10 days !! We picked up an antibotic and should now be well on the way to recovering. I am still giving Motrin , periodically to keep mthe fever down but he seems to be feling alot better . I wonder if I'll get any sleep though because he has slept about 3 hours today .
Jake just finished first grade !!! He made really good grades , mostly A's with a couple of B's all year long !!! I am really proud of him obviously. He continues to struggle with his eyes (severe dry eye, due to radiation etc ) but is otherwise really healthy .
His broher is 21 rs old and in drafting school . Sister(donor)is 17 yrs old and about to start a new job.
Our family can certainly use prayer , good vibes whatever .. our unity was lost and it has been very difficult for some of us to adjust etc...
Jacob goes back to Houston for all his annual visit stuff in August . He will be 7 yrs. remission (post BMT #2 in september) but we like to get it all out of the way before the new school year begins .. I thank God Jacob is doing so well , hang in there newly diagnosed parents ... the road is long and hard but well worth the effort .
I'll try to post new pictures soon Michelle (:
Thanks for checking
Danette

Monday, May 10, 2004 9:45 AM CDT

Hi all,

I know we haven't been in touch lately and I'm sorry about that ...very very busy , as always but hyped by finals, computer problems , several family illnesses , financial and martial woes here , not much time to write... you get the picture?

Speaking of pictures, I STILL haven't gotten the cooperation of my lousy scanner to post his photos from Sears .However, my cousin took pictures of Jake at our family reunion yesterday and I begged her to e-mail me some so I could show everyone my new boy !!!

Jake had croup a couple of weeks ago , I took him to the pediatrician , he instructed me to give him a big dose of steroids to help speed the healing of the terribly inflammed vocal cords and tonsils. I DID, very reluctantly and it still took 5-6 days for Jake to feel better. Then the week following he got a "pink eye" infection that required another trip to the Peditrician and eye drops for 5 days.

Jake went to the dentist too, he has 5 cavities !! The structure of his teeth has been altered ( likely due to the radiation ) , leaving him very vulnerable to cavities . The dentin ( hard part of your tooth ) is exposed . The hygenist was surprised that he doesn't complain of pain . We have scheduled him several dentist visits to have them repaired as much as possible . His sister too had 5 cavities , no good excuse for her except she doesn't brush well enough. Anyway,another 500 dollars for cavities to be filled was NOT my idea of a good way to spend cash.

Jake went to endocrine this past Friday , he is growing pretty well since he came off the steroids ( he's almost 41 inches now ) . The endocrine doc says he'll be followed VERY closely from here on out but that right now she doesn't see growth as his biggest concern. She DID have 2 concerns that needed immediate attention though.
One, She wants an ultrasound done and some blood test to look at the function of several glands , including the ALL IMPORTANT pituitary gland. Basically, she is concerned that he doesn't produce the stress hormane ( called cortisol , I think ) because with the steroids he's been on for nearly 3 yrs he hasn't had to produce any on his own . So the fear is ,that the gland is lazy or out of practice and it can't keep up , sort of "forgot how " to make the proper amounts of this hormone . The problem is that if Jake gets really sick , his body could not respond properly and cause a very dangerous situation for him, namely his "blood sugar " would plummet very quickly and without any warning . Seizure , coma, or the like COULD occur, as a result. SCARY ... nice to know now , since he DID just have a bad case of croup 2 weeks ago!

The other concern is that he had fluid build up in his scrotum sac when she examined him . He has to see a urologist ( add that to our list ) to have it evaluated very soon. Basically, the fluid from his abdomen is
" communicating" with his scrotum (it's not supposed to, BTW). Major problem is not only possible damage to his testes but if the "holes " that the fluid is seeping through are open enough , Jake's intestines can descend downward and become kinked or obstructed. ughhh.

What else, huh? Well I just got over a sinus infection via a trip to the doctor for 3 prescriptions!!
Want some good news now?........
My van , I think, is finally fixed and I can now go get it inspected ( 2 months overdue ) and my brother in law fixed my computer that caused me too many problems during the last 2 weeks of school. School,that was a huge stresser ,is over for now. I finished (God only knows how) with 4 A's and 1..B. I just received a 400 dollar scholarship in the mail and I applied for lots more that I hope come through too. With all this medical stuff , we could use all the help we can get!!!

More good news too, as I don't want you to think that it's all bad here.. I register Jake for Kindergarten tomorrow !!! I have spoke to the principal about Jake and she has agreed to hand pick Jake's teacher ..one that will be sensitive without crippling his efforts to be normal!! I cry when I think of how big he is now !! And Friday,we leave for his Make a Wish trip to DisneyWorld,that's
the big excitement here for now...............!!!!!!!!!!!!

Take care and GOd bless,
Danette

Monday, April 26, 2004 2:28 PM CDT

Hi all,
I know , I know no updated picture yet... I'm getting to it .... I have to update some software then I can safely load pictures. My focus for now is trying to hang on to some family time and finshing projects and papers for school... now the last 2 weeks of the semester.
Jake is sick and that doesn't really help ,but he'll be better soon. His pediatrician diagnosed "croup" this morning at the appt. He is doing lots of coughing , has a funny sounding voice , labored breathing and fever of 102-103 during the night ....now hovering at 100 without meds. He's grumpy and tired.
The doctor prescribed.... would you believe ...steroids ...ughhh... well, just one single big dose and then the doc says the vocal cords will stop swelling and he can breathe much better and be as good as new in a few days.
Jake is napping now and I've got to get busy with some homework and housework so that I may sleep sometime tonight too. Thanks for checking , I'll update again soon.
NEXT appt. MAY 7th --- endocrine to check growth status

Saturday, April 3, 2004 8:52 AM CST

100 PERCENT DONOR !!!

all 200 cells...= girl ~!~~

We went to the doctor Last Friday , Jake was just getting over the virus thing, so his blood counts were a tad bit off but surely as well as could be ...

Segs 20
monos 6
lymphs 68
easo 3
bands 3

ANC was only 1300, but I'm sure it's better after getting over the virus completely. HGB 12.3 , platelets 369,
WBC 5.69 .... THESE ARE ALL ARE NORMAL. We are to call for a return appt. in 2 months !!!! NEVER, NEVER ave we gone to the doctor every 2 MONTHS ... This is amazing and God is good.
Jake will be starting Kindergarten in August and I am so thankful that he will be off ALL his usual medicines by then.. Currently , He takes Bactrim 3 days per week for the next 2 months or so, but besides that ..nothing... no steriods ( off of them for 5 weeks now!!) eyes doing beautifully ... Pictures posted by next week !! SKIN ok , not bad considering . mouth , looks good too !!! NO penicillin , none needed the doctor said , no diflucan. He does use skin ointment( "Protopic" , FK 506 derived) along with the very waxy , thick sunscreen but that's only to protect the skin.
I will schedule a dental and endocrine appt.First part of May , then we are going to Disney May 14-21 on Jake's Make a wish ...we have never been on a plane , nor have most of us even left Texas So, this should be truly exciting !!I 'll take LOTS of pictures !!! Until then , God bless Ethan , Caitlin, Jordan , Libbie and give peace to all! Love,
Danette
And thanks for checking !!!

Wednesday, March 24, 2004 9:10 AM CST

Hello everyone,

We enjoyed Spring Break pretty much ...perhaps too much, since we didn't get done what we needed to . I have LOTS of homework assignments to catch up to . We went camping for a few days . It rained TOO much for it to be really enjoyable. Jake played with his cousins, went fishing a little , rode his bicycle and rode in the boat, roasted weiners and marsmallows too ...so I suppose he had a good time anyway!!
The eye surgery went well , as I said. He was never in pain and it all happened very quickly and was over. We did spend Mon, Tues. and Wed. going to Houston which was tiring and all but we did get to see Ethan one day.
We had a new baby born over the break too. My nephew is the proud Daddy to Ms. Taylor Leigh who weighed
4 lbs.10 ounces and 17 inches long. She is very tiny and very pretty !! She was in a hurry to get here since she still had 6 weeks to go before her due date!! Anyway , she is relatively healthy and came home Sat .
We haven't had a chance to see her since the day she was born and everybody KNOWS how much I love babies !!!
WE WENT TO MY DAD'S HOUSE FOR A BIRTHDAY/BBQ for him this weekend . He's 60 !!! He had surgery several weeks ago and isn't able to work ad had grown quite depressed about it . It was good to see alot of my family there.
Then Sam , Jake and I got a nasty little virus thing . They did some vomiting , I just felt very quesy and restless.We are home today recovering but feeling LOTS better.
We cancelled our appt. on Friday last week too . Jake had a return appearance of the parasitic infection over Spring break, so I felt like the medicine would surely throw off his blood counts and I didn't want that. So the donor percentage check and his regular appt. will take place this Friday instead. Please remember him for all girl/donor cells this time !! I hate even 1 or 2 male cells to appear in the sample. It's scary !!
I DID get into nursing school starting in the Fall .Apparently, I was one of 65 people chosen . This year they had 185 applicants !
That's about all that's been happening here , I will write again next week , hopefully with a 100 percent donor cell report !!!
Thanks for checking ,
Danette

Tuesday, March 16, 2004 1:46 PM CST

Hi all,

I just wanted to give a quick update ... Jake's surgery this morning went really well and he is feeling good. I am throughly exhausted, having gone to 3 different hospitals yesterday for a total of 5 visits . ( not all for Jake,BTW) and then back today. We have to return tomorrow
afternoon TOO for follow up and Friday for BMT clinic.
He WILL need new glasses , as per Dr. Yen's evaluation results ,during this surgery she wanted to get a good look at his eyes WITHOUT him moving around. His astigmatism
( bad spelling?) is either worsened or was already worse than she had originally thought. In any case, that makes
3 pair of glasses in the last 10 1/2 months ....ughhh.... ANd my husband wonders how we never seem to have money. This time though,I hope to save a little money by using the same frames and just getting new lenses.
Jake will have his donor percentage rechecked on Friday , so please think , pray and believe 100 % girl cells ( long story for those of you that are new to this !!!)
THAT'S ALL ... SHORT UPDATE BUT THANKS FOR CARING !!!
DANETTE

Saturday, March 6, 2004 8:50 AM CST

Good Morning all,

Jake has now been completely off of penicillin and prednisone for 3 days. He took his last dose of steroid on Sunday and the penicillin was deleted on the Tuesday that followed.
He is happy and active , generally good. The eye drops have been completely unnecessary, recently. We still plan to go ahead with the surgery on the 16th, however,( to plug his tear ducts ) because he does do some rubbing of his eyes ....just enough to let us know they are uncomfortable. We will see his regular opthamologist this coming Monday to consult with her ( Jake now has 2 eye specialists that treat him ) Dr. Yen has had a new baby recently and she has no idea about this surgery yet. We hope to get her blessing for it , as well as , see if she is ready to remove one of the cataracts. I do not know if this will be appropriate at this time and don't want to "rush " them into doing anything prematurely but if the doctors can arrange it while Jake is "out" already ... its all the better , I guess.
His skin has been moderately worse since the steroid wean both in itchiness and appearance ,but still extremely mild in any case. He has lost ALOT of weight ( about 10 lbs altogether ) though his cheeks are still a bit puffy. He is in the 50 percentile range for weight now ,for his age (rather than off the chart...over 100as he was ) He still has height issues ...he is less than 5 ercentile for age , but he has grown at least 2 cms. in the last couple of months . He looks like a completely different child . I HAVE to get pictures made VERY SOON ,so that I can change these on the page FINALLY !! I would have done it already but,we just simply have'nt had the money to spare.
We will likely see the endocrinologist in April for his 6 months check up. The last time we saw him he told us that he would probably begin to grow again after the steroids were no longer a part of his life .
... He will see the dentist in April as well ...he doesn't brush well so I hope that he doesn't have any cavities .

Jake still likes "school" ( day care / pre-school program ) very much and we talk about Kindergarten now and he is getting more "used to" the idea. Mostly , he wants to learn to read he says !! I think that getting up early every morning will be hard for him though he likes to have a nap every day and /or get up late in the day. we'll have to start preparing him soon for that big change .

I have now completed all the ncessary paperwork and tests etc ( and it was ALOT of hoopla ) to go into the nursing program in the Fall. I did very well on everything and now just hope I can catch up on my current classes since all that took so much of my time , I have laggged behind recently. I HAVE to take at least 1 or two classes this Summer in order to have all the pre-requisites completed but those are classes I am sure I'll enjoy .

This is getting way long , so if you hung with me this long you are surely a concerned friend and I thank you for that and wish you well. Many blessings,
Danette

update :March 9th , 2004

P.S. He will not be getting the cataracts removed at this time . Dr . Yen felt that it was unnecessary right now as they are very stable ( not growing or effecting his vision anymore than they have been ) . She pans to "visit" him while he is "out " next week and get a really good look inside his eyes though. We stopped by the Bone marrow clinic to weigh and measure him and say "hi". Cheryl ( his PNP ) thought he looked great . He weighs 43 lbs and is 102 cms 40 inches ( improvement in both regards ) . He has been off steroids and penicillin for a whole week now !!!!!!!!! yeah !!!!!

Monday, February 9, 2004 7:58 PM CST

I want to ask that everyone keep Conor's family in thought and prayer. Conor passed from this life on
Feb. 4th ,he had spent nearly 2 yrs. ungoing transplant and treatments to kill the JMML that had invaded his body. He is a hero and a very brave little boy to us all !!! ....He is at peace now.

I took Jake in to the opthamologist and the ENT doctor today. The opthamologist had a hard time believing that such a low dose of steroids helped Jake so much with his eyes. Nevertheless , after careful review of his history and a relatively through exam , she decided that we should try to plug his tear ducts ( requires a simple surgery ) , she feels that his dry eyes should be pretty much relieved with this procedure. It is scheduled mid- March . Then, we saw the ENT doctor and she said he will soon lose one of the tubes, as it is barely hanging on . Then we will see if he gets ear infections again or if he can tolerate without them . For now , we should re-schedule in 6 months !! BMT clinic is scheduled for Feb. 20th . I will update again then... Thanks for checking,
Danette

Friday, January 30, 2004 7:47 PM CST

Hi all,
Here's this week's report... On monday, I e -mailed Jake's PNP and asked for the differential report. It was way whacked out with only 19% neuts, 4% easo, 11 monos , and 64 % lymphs and 2 % baso. Crazy to say the least, but I wasn't concerned because he had that parasite infection the week before and sometimes it takes awhile for everything to settle down.
The bone marrow result was e-mailed to me on Tues 99 % donor , which is good but I hate the fact that those lingering 2 cells ( out of 200 tested ) were deemed male cells. I was very disturbed and feelings of despair intially took over . I sent another e-mail asking what the marrow looked like besides the donor cell count and she promptly replied the next morning saying that there was no evidence of leukemia or any abnormal cells in the test slide. We will recheck the donor percentage in 2 months. After I got this news, I felt ALOT better .
It's exhausting to always be on the lookout for trouble starting , always second guessing every cough, rash, etc. Next month marks 5yrs. since Jake was diagnosed with JCML. I have learned a great deal, perhaps more than I wanted to. I can't begin to tell you how much things for us have changed . Some days, I feel like I am barely hanging on, like being dropped off in a foreign planet, all alone and without a translator. Other days , I feel like I can conquer the world . I need more of those other days.....
Oh well, in other news...
Samantha got her braces off yesterday , her teeth look very nice AND it was very nice of the orthodonist not to demand the almost 2000 dollars we still owe !!! We were supposed to have been paid up by the time she got them off but so far they have been relatively patient with us. When she had them placed I was working full -time and had every intention on getting caught up on life /bills etc. But Jake's GVHd had a different plan for us and I quit my job to take care of his issues. You never know what life will throw your way and we were caught unprepared !!
Speaking of, the job hunt continues for me though Jake's school is doing a good job of keeping me busy substituting for the teacher's that are out for dr's appts. , family issues etc.
Jake sees the eye specialist (about the GVH) and ENT (regular evaluation), within the next couple of weeks . Until then, thanks for checking and many blessings to you all,
Danette

Friday, January 23, 2004 9:08 PM CST

Hi all,

What a long day... We went to the hospital to get Jake's blood checked and get the bone marrow aspiration done today. All I know about the blood work is the overall results as they were trying to get us to day surgery early and I never got the print out of the differential.
The Hgb was 13.6, the white count 5,900 , platelets were 378,000 . All very good . Jake also lost an additional 2 lbs and is now 46.3 lbs or 21 kgs !!!
We did increase the steriod about 2 weeks ago to 2 mgs per day ...that seems to really help his eyes ( although still uncomfortable they are better ) . The doctor wants us to see an opthamologist that has experience with GVHd issues. The onocolgist discussed maybe "plugging" Jake's tear ducts ...though I have read alot of negative information on this.But, I am open for almost anything that will give Jake more permanent relief as his eyes are terrible, if we don't use TONS of eye drops everyday. There is also some kind of implant that seems promising ...It originated in Boston and isn't widely used yet but according to the patients' personal accounts they have very good ,successful results!! We'll see .....no date for that yet.
On the job front, there is none ...lol.. The one good lead fell through. I am still doing part time at Jake's day care and it helps and I love it but I can't get enough hours there to help set us straight so I'll keep looking until something turns up. I am continuing in school and am trying to get in the mood for that .. I wrote a couple of excellant papers for English ( excellant for me, that is )!!!...lol . I also continue to place applications and check on leads as much as I can ....
Well, the bed calls after this long day.... Thanks for checking and May God bless you as you bless others.
Danette

Sunday, January 18, 2004 11:10 PM CST

Hi all,
Just a very quick update... Mostly to let you know that we missed the bone marrow aspiration on Friday. Jake had an intestinal parasitic infection. sounds serious huh? ...it could be I suppose but we got him some medicine and he should be just fine ... we postponed the BMA until this Friday , the 23 rd. Actually , this probably explains the weird blood counts last week.
Jake has officially moved into his new room . He has slept there 2 nights in a row now!!His brother moved to College Station last week , leaving his room vacant. Richie will be 18 this week and is already spreading his wings :( Man,am I getting old. I have been kind of depressed about the whole thing . I know they have to grow up but I sure do miss when they needed me more.... the little man stage !!
School is back in session for Sam and me. I am undecided about my future as I don't really have it in me to go on right now. I'm registered and going, but I am searching for a job and if I get one soon , I may just cut back to give me some space to breathe. no hurry right? We'll see....
I really need a job and it is really hard to go to school full time and work full time and still be sane. Let alone spend time with your family.
I'm gonna close for now , maybe I'll have some more concrete news about things by next week!!
Take care and God bless,
Danette

Friday, January 9, 2004 9:07 PM CST

Hi all,
Hummmmm.. good news/bad news ... what else is new huh?
Went to the BMT clinic today . Jake got 2 pokes ( not bad ) He lost 3 lbs since his last visit on Dec. 5 th !!
I thought it was actually more ,but the scale doesn't lie and that's O.K. (progress).
Blood work looked mostly very good his WBC was 6,800 ... Platelets 375,000 and HGB 13. 8 all nice but there was a shift in the differential that I could have done without !!!
segs/neuts 30 , lymphs 56 and monos 14 ( yuck ) . The consensus is it's nothing to get alarmed over and I'm not( this time ) because it is likely that it's the decrease in steroid that has rocked his WBC's . In any case , Jake is scheduled for Bone marrow aspiration next Friday ( not because of this , but rather he hasn't had one in a year) . Nowadays , we do the donor percentage via the periphial blood and those results have been favorable for a long time.... 99.5%( 1 cell was male /out of 200. ) last January , then 100% in April and again 100% in August .
The bad news is that his eyes are still giving him a fit "very dry" and we have to stop decreasing the steroid because he's not tolerating it so well. We may even have to go back up a bit ,as well.(ahhh... see- saw, I know it very well). Seems like the GVHd most effects his eyes now. a couple of mgs. of steroids is a small price to pay for more comfortable eyes , I suppose.
For those of you that understand GVHd , you will understand when I say GVHd is both a nuisance and a friend. It may be a part of our lives for a few more weeks or a few more years (nobody knows), it 's very frustrating, but we are learning to live peacefully with it ( what choice do we have ? ....lol ) .
Please remember to say a prayer for me regarding the job hunt and Jake's BMA next week !!!
Thanks for checking in on us and caring !!
Danette

Saturday, January 3, 2004 1:18 AM CST

Hi all and Happy New Year !!!

I hope you all have resolved to love one another and spend as much time together as possible for this year !!!

Jake is doing well, he enjoyed Christmas ....what kid doesn't? ...lol. He got a new bike , An aquarium ,a Lite brite, lots of Kasey the Kinderbot software and a few other goodies !! Sam got lots of new clothes ( she needed them ... she's growing like a weed !!) ,a new comforter and matching sheets ( she needed !!) and a couple of new CD's . They are happy ...Thank God !!
For me ... I'm glad it's over . Too much hoopla for Christmas time ... I hate to sound like Scrooge but it's all too commercialized (sp?) for me !!! I took the tree down today and will work on the lights tommorrow, if I get a chance!!
Monday, I begin the real search for a job... the bills call !!! But, unfortunately I'll get a late start, as I have to attend a funeral that morning ......ALREADY this year. I dear fellow from our church passed New Year's Day .. He was old ( like 87 , I think )but he came to church nearly every service, got around pretty good too. Everybody just adored him ...we all called him "Paw Paw", because he was like the Grandpa of the congregation . I have tears now, gonna miss him so.......
Jake had to go back to the eye doctor the day after Christmas. I wanted them to check his eyes because he was doing so much rubbing, I was afraid he had scratched the lens or something.I surely didn't want a repeat of 18 months ago with the corneal ulcer thing ...nightmare!! The steroid really helped his eyes I guess. Doc came in for a special trip to take a look as the clinic was closed that day but she said they were just really dry and he needed lubricant for the next week , around the clock... guss what we have been doing?....lol. They are much better now !!! Jake now gets 1 mg every other day of the steroid and we are all bet certain that he will be off in a couple of weeks !! He is wearing size 5 clothes again and he looks so much more like Jake ...still a little puffy but it's going ...........yeah !!!!
He is scheduled for BMT clinic on the 9th and we do't expect any surprises. We are looking to our future now with much more certainity than we have been allowed in recent years . I Thank God for healing my son and I Thank everyone that has held us up in prayer and hope you all will continue to pray for us as we attempt to reconcile the magnitude and consquences (sp?) of Jake's illness and the many gifts that has been given us !!!!
Many blessings for a Happy & Healthy 2004 !!
Danette

Monday, December 22, 2003 11:11 AM CST

Merry Christmas to all !!!
and
May you have a blessed New Year !!


Finally,I am getting a chance to update here ...
There isn't much medical stuff to report so the updates are getting a little further in between . Thank God for good news !! Christmas is a time of reflection , memories and thanksgiving . We ARE so very thankful that Jake is doing so well. For too many Christmases, our joy has been somewhat tainted by some unexpected piece of bad news. WELL, not this year!! Yeah !!!

We have been very ,very busy here . With attending school parties, family get - togethers, looking at lights (Jake's favorite ), the church play ( Jake was a shepard and did a great job !!his sister was Mary and did wonderful, as well ! ), semester finals for me , buying gifts etc. etc.etc., it has been absolutely crazy here!! We finally have only very minor things to attend to and will hopeully get to enjoy the season a bit more now !!

Jake's brother ,Richie, just finished high school (one -semester early )and we are so proud of him !!! He just signed on full -time at his job . He will not go to college right away . I think he needs a little time off and that's O.K. with me . He IS looking at his options and intends to start something within 6 mos or a year.

Samantha will start high school in August. And Jake will start Kindergarten too, at our local elementary school, if all goes well . ( he still is not eligible for immunizations!!!)
He continues to wean from the steroids and is already looking less "puffy" . My nephew and his girlfriend came for a visit at Thanksgiving and then again this past weekend . His girlfriend made a comment as to how she could tell he had changed since they were here last !!!
Jake's eyes are the only thing that have been questionable with the tapering. I have to use ALOT of eye drops to help the itchiness .

I am waiting for a bit longer to have new pictures taken of him as I don't really have the money for pictures right now .My job has ended and until we return to school (mid-Jan )I have no idea what to do ! I was temporarily working as a substitute, at Jake's day care, for a teacher that was out on dialysis. She is much better now and feels like she can assume her role as teacher in that class. I am so very happy for her but I AM concerned about what will be available for me come the new year as we are already "behind" and can't afford too much of a lapse in jobs. I hope everything works out for everyone.

Jake doesn't go back to the doctor until Jan 9th and will likely be off the steroids by then !!! They are letting him go about 5 weeks in between visits now and that is very nice for us !!
This is getting rather long, but I wanted to wish everyone lots of love and many blessings for Christmas and the New Year too ..... especially much courage and peace for those who have a child or loved one that has "gone on" to be with Jesus for His birthday !!!


Love,
Danette

Monday, December 8, 2003 9:22 PM CST

Hi all,
I wanted to finish all the yearly testing panels before I updated .. Almost 3 months ago, Jake celebrated his 3 yr. post transplant( # 2 )
anniversary !!!! Since then, things have been going pretty smoothly
(medically speaking) . Every year Jacob has to undergo a large battery of
tests to check for any late stage abnormalities caused by the transplant
procedure ( chemo /radiation etc. ) . In years past we could do them in 2 or 3
long days at the hospital .This year ,however, it has taken nearly 3 months
to coordinate all those appts because I am in nursing school and working
again thanks to Jake's continued good health. We finished 2 days ago , all
tests went well with only very minor concerns with Jake's heart and his
kidneys.
Jake has a small ( insignificant... the PNP called it that ..NOT ME )
backup of blood flow in his heart.
His kidney output was only about 2/3 the amount that he should be
discarding, but this too was relatively unconcerning to the doctors .
Everything else came back very good. Essentially ,they thought that he will
continue to improve over time.
He DID have to get a new pair of glasses because his eyes had gotten
worse ... very quickly.As some of you might recall , he has cataracts caused by
the medications that he uses to control the Graft vs. host disease. Surgery
to remove the cataracts is ineveitable somewhere down the road , as I understand it , but no one can give us any accurate time frame for that just yet. We continue to "patch " his eye to help keep the muscles strong
and to hopefully put off the surgery for as long as possible.
The best news of all ,though, is that Jacob continues to tolerate the
tapering of the steroid dosage . He has been on them everyday for more than
2 years now . They keep him quite "puffy " and he gets awful comments directed at him from people that just don't understand and are too stupid to keep their opinions to themselves. If he does as well as he has so far,however, he should be off of them altogether sometime in January !!!! This is both exciting any scary !!!!
Mostly , he is a very happy 5 yr.old thatloves to sing and write and he looking forward to seeing all the
Christmas lights and spending time with relatives this season !!!
Love ,
Danette

Friday, November 21, 2003 7:21 PM CST

Hi all and Happy Thanksgiving !!

We sure do have alot to be thankful for ....
Although, I have been a serious slump lately ,it's mostly because I am overtired from school and work and completely swamped on the home front. I'm not complaining (anymore..hehe) , It's just that I feel bad that I'm not super mom / wife/student/employee etc..I don't get to spend near enough time with my kids and I really don't have many choices,as to my schedule lately.
I have about 4-5 more weeks in this semester and I get 3 weeks off!!!! Anyway.....
Jake went to the doctor(s) yesterday . At the eye clinic they dilated his eyes and 3 people checked he status of his vision and cataracts. Suffice to say we HAVE to increase the patching exercises to at least 2 hours per day ,EVERYDAY .Jake hates the patches . He cries . It's hard work seeing through the "hole" that he has left in the right eye . He got new glasses today ( a stronger prescription was needed ) . Now we have to use 2 different types of eye drops 4 times a day to help moisturize his eyes as he doesn't produce enough tears and with the decrease in steroid ( we are at 3.5 mgs/ day ) , his eyes are irritated more than before .
We also met up with some new friends at at the hospital across the street from Texas Children's ( M.D. Anderson )
A face to face meeting with Little Ethan and his parents did us all some good. Strange how people that you have never met are like friends already. Jacob and Ethan are both 5 yrs old , born just 12 days apart. Both of them have been diagnosed with JCML , Jacob when he was a baby and Ethan pretty recently. Jacob is doing very well now , despite some very trying times early on , and we expect that soon he will be relatively free from medicines and dr's visits.
Ethan on the other hand is just beginning .It was a weird feeling being there ,both in a good way AND in a bad . I wanted to help ,to encourage and give hope . I had
hoped seeing Jacob would help them know that all things are possible,but at the same time I wanted to share some
realistic knowledge of what to expect . How do you tell someone that their lives will never be quite the same , that you may have to go to hell and back before life will even RESEMBLE normal again? I prayed for God's grace and wisdom and I think I got that .... Jake and Ethan hit it off pretty well !!! Jake wants to know when he gets to see Ethan again!!! They are beautiful kids with a connection none would ever hope for and certainly none deserve. But they just make the best of it and do a darn good job doing it too !!!
We parted company after lunch because both boys had appts.in separate clinics. Jake went over to get his yearly Echo done . He was exhausted and fell asleep during the procedure !! The tech said he has a very healthy heart ...no concerns ...yippeee.
We may have the whole month of Dec. off from doctors. I asked that his Oncology appt be changed because I am swamped at school and work and can't afford to take off anymore work for now. We will go during the Christmas break sometime .. There are no true concerns . Just watching and waiting for problems related to the tapering of the steroids. We may stick to this dose for a long while as he has had a couple of loose stools, itchy eyes and his lips look a little worse too. We'll go back up IF we have to but for now I'm trying to stick it out with hopes that his body will adjust after the initial drop. That's about all I can write for now as I have got to go study .
Many blessings to all and thanks for checking in on us.
Danette

Sunday, November 2, 2003 11:19 PM CST

Hi all,
I just wanted to throw in a quick(hopefully ) update .
The birthday hoopla is finally over and I still am finding places for all the new toys! He spent the last of his birthday money yesterday on a construction playset..that I might add he still hasn't gotten around to playing with ... it has to be assembled and Daddy is away on the annual hunting trip and won't be back for a few more days, Mom is certainly not very patient (sp?)with all those little pieces , so big brother will have to do it this time.
Jake went to the doctor last Monday , he did the 24 hr. urine collection the day before and they are running the creatine clearance check ( a kidney function test) on that. His blood work was really good , though I can't recite numbers right now.His weight however was another story ... I was SURE that he had gone down several pounds ( from the decrease in steroid recently ).
However, the scale told a different story 51 lbs/23.2 kgs which anyway you look at is the exact same as last month. The doc said it is unlikely that he will lose until we are down to every other day dosing. She did however seem happy about how he is handling the decrease and said that we can continue to go down very slightly little by little . He has started on 4 mgs /day now !!! We have been on 3 mgs before and had to go right back up because he had too many issues that surfaced with that low of dose. So we are cautiously optimistic that by decreasing the dose very ,very slowly that his body will be able to finally go off the steroids alltogether ...once and for all !!!
He has got a couple of appts on Nov. 20th( Echo and Eye clinic) and I am supposed to schedule for the Ear , Nose and Throat Dr too but all these are routine checks not for any problems per say. And , He gets a 6 week break from the cancer clinic .... I am quite sure that is a record in all of the nearly 5 yrs doing this !!! Boy , Am I ever impressed ~!!!
In other news, Jake and I were off a few extra days this past week ... I had some really nasty virus/flu and Jake literally had the run of the house while Dad was at work !! I felt too bad to move from the couch and slept more in that 4 days than I usually do in a month !! As soon as I got over it , Jake's sister gets a viral thing too and had to stay in bed for several days with a whopper of a fever.
Big brother came home from work last night with a serious cut on his hand , he was as white as a ghost and it probably could have used stitches . He said he had passed out at work just after it happened. He let me drive him (in his new car) to Wal-mart to but some butterfly closures and some other stuff to help it heal . He just sold his truck and bought himself a 99 Cougar less than 24 hrs before so letting Mom drive was a big deal !!! AFter all the hoopla here , Let's suffice to say , I am way behind on housework, school work and just about everything else.... So until next time , be good to each other and a say prayer for someone you love .Visit Jay 's site (above ) if you get a chance , Jay passed from this world last Sat . ,after a couragous battle with JMML and his family could use some prayer!
Love and Blessings,
Danette

Saturday, October 18, 2003 10:52 PM CDT

HAPPY ,HAPPY BIRTHDAY BABY BOY !!!
YOU ARE 5!!

HI ALL,
JAKE HAD HIS OFFICAL BIRTHDAY YESTERDAY , THE 17TH.
I THINK I WAS MORE EXCITED ABOUT HIS BIRTHDAY THAN HE WAS !!! FIRST WE WENT THURSDAY NIGHT SHOPPING, SINCE I HAD NO IDEA WHAT HE WANTED . HE PICKED OUT A NINJA TURTLE CELL PHONE, CAR, FIGURE AND A SICK THING THAT MAKES WIND SOUNDS WHEN YOU MOVE IT AROUND . THEN HE ALSO GOT A SLINKY AND A DORA BACKPACK !!THAT WAS JUST FROM OUR SHOPPING TRIP !! WE STAYED UP REALLY LATE THAT NIGHT SO WE SANG HAPPY BIRTHDAY AT MIDNIGHT. SEVERAL AUNTS AND FRIENDS SENT MONEY IN CARDS FOR "LATER "TOYS ( I DECIDED ) .
HE HAD A PARTY TODAY AT CHUCK E. CHEESE. I HATE THAT PLACE . NOT THAT IT WASN'T REALLY FUN FOR HIM , IT'S JUST THAT IT'S SO CROWDED THAT YOU HARDLY CAN KEEP TRACK OF YOUR KIDS ,LET ALONE "VISIT " WITH THE PARENTS. HE GOT LOTS OF VERY COOL TOYS... A FIRST TELESCOPE, LOTS OF DRAWING MATERIALS (WHICH HE DOES ALL DAY ,EVERY DAY ), SPIDERMAN WEB SQUIRTER, SPIDERMAN CAR, A BIG TONKA BACKHOE ETC. HE PLAYED GAMES ,CLIMBED IN THE TUNNELS , DANCED ETC.
MY SISTER-IN-LAW MADE THE MOST FANTASTIC CAKE FOR JAKE . A BIG 4X4 RED 3-D CAKE CAR ON TOP OF A "MUD" LADEN SHEET . IT WAS THE GREATEST !!!
JAKE HAD THE MOST WONDERFUL BIRTHDAY . MY HOUSE IS LITTERED WITH WRAPPINGS AND BOXES.LOOKS LIKE CHRISTMAS MORNING HERE. THANK YOU EVERYONE ,THANK YOU.
IN OTHER NEWS, HE GOES BACK TO THE DOCTOR FOR CHECK UP ON THE 27TH . HE IS DOING VERY WELL ON THE NEW DOSE OF STEROIDS AND IT LOOKS AS IF HIS FACE IS GETTING A LITTLE LESS ROUND. WE STILL GET ALOT OF STARES,WHISPERS ETC( OUR CHECK POINT WHETHER OR NOT HE LOOKS NORMAL AGAIN) , AS i HAVE SAID BEFORE i DON'T "SEE" HIM THE WAY OTHER PEOPLE DO SO SOMETIMES I AM NOT THE BEST JUDGE OF HIS TRUE APPEARANCE. I DO KNOW UNBIASEDLY ( YEAH RIGHT...LOL) HE IS THE MOST HAPPY GO LUCKY KID THAT I KNOW . I AM MORE PROUD TO BE HIS MOTHER WITH EACH NEW DAY , KEENLY AWARE OF WHAT A WONDERFUL GIFT I AM GIVEN . TO BE ABLE TO SEE ANOTHER BIRTHDAY WITH MY BOY WHOSE BUSY GETTING HEALTHIER DAY BY DAY.
BLESSINGS TO ALL,
DANETTE

Friday, October 3, 2003 8:32 PM CDT

Hi all,
We have just settled in for the night.... (almost) another essay for me to write and another test to study for, for me before a 9 AM class...Jake has rented movies to keep him busy and we have to pick up Samantha from a Back to school dance at 10 .
We did all the clinic stuff today so I thought I'd write that before I forgot to.... Endocrine was first, Jake was a little toot thanks to the long wait . He was way boring when the camera crew wanted to do some videoing for a TV documentary ? about human growth hormone ... He just sat and drew on some paper and kinda ignored them mostly. The doctor was excited though...lol. She examined him and relayed some info about some prior blood tests . Essentially , Jake is short because he has been on steroids so long. possibly somewhat due to the radiation too, but mostly the doctor thinks that his height will begin to improve more towards normal after the prednisone has ceased to be a part of his life. We are now going to be followed every 6 months or so by the Endocrinology Dept. now ,we will add that to the list...lol
His bone age was almost the same as his chronological age so that's good .The hormone functions were all within normal range,so we now have much hope that he will grow more normally when the steroids are no longer needed.
Speaking of , our next stop was the Bone marrow Clinic where Cheryl was happy about his progress ( skin, mouth and eye issues look really stable ) so, we can go down again on the prednisone to 5 mgs /per day !!!! We will start with 6 mgs. ( from 7.5 mgs )for the first 10 days or so then move to the recommended 5mgs until our next evaluation visit in 1 month !! Jake usually has a hard time moving down the standard 2.5 mg decline,so I decided to take one step in between instead and that usually works for him. I want him to be off the stuff but I am not anxious enough to risk
another set back. We will go the slow ,steady route this time.
His blood work was great !! He got 2 pokes this time and fought really hard not to get the second one.He usually does
really well but he was a real toot all day today.We missed his prednisone and penicillin both yesterday morning and this A.M. and sometimes that is all it takes to set him in a crappy mood. Yesterday the meds. got spilled in the car
on the way to school.( I had it prepared, mixed in a med.cup to give it to him as soon as he woke up enough ).
This morning he was such a little toot I just plain forgot to give them ,until we were half way to Houston.

Here's the counts , WBC is a bit high ( 15.11 ) probably because he has a little cough and congestion going on for the last several days ( as do the rest of us !!) ANC steady at 6500. Diff. is segs 43 lymphs 51 Monos 6..no unusual cells this time ( Thank God ). Hemoglobin was 14.5 , which explains all the energy ...lol platelets 338,000 all the chemical panel etc.is about the same as last time or better. His BUN has been a little high
the last several trips and this time took a nice drop to
12 , which I think is normal.
Our last visit was to Cardiology for EKG and that went well but I won't know anything about those results for a week or so but I doubt there would be any concerns from that. That's how this trip went and we are very pleased about all of it !!! I keep saying to myself ooooo a whole month without a doctor's visit...It's like Christmas (only
comes every once in a long,long while !Hopefully this will
become our new normal,but if not we'll take it for this time anyhow ....
I will close for now , AS I HAVE TO STOP PROCRASTINATING AND GO STUDY !!! THANKS FOR STOPPING BY , LOOK IN ON OUR FRIENDS UP TOP (LINKS) AND JOT US A LINE IF YOU HAVE THE TIME.AS ALWAYS,WISHING EVERYONE BLESSINGS .......LOVE,
DANETTE

Wednesday, October 1, 2003 10:03 PM CDT

3 years in remission .....cool huh? I LOVE IT ....NEVER COULD WE HAVE PICTURED THIS DAY. JAKE IS WELL, WE ARE BOTH TIRED MOST DAYS , DUE TO OUR INCREDIBLY BUSY SCHEDULE.THE HOUSE IS A MESS AND I HAVE ESSAYS TO WRITE BUT I THINK WHEN I FINISH THIS I WILL CRAWL INTO BED, SEEING AS HOW I CAN'T QUIT YAWNING. JAKE IS DOING REALLY WELL WITH HIS PREDNISONE DOSE. HE LOVES SCHOOL. HIS TEACHERS ARE VERY CREATIVE AND I LOVE THE FACT THAT I CAN SEE HIM PLAY WITH OTHER KIDS . ITS ALMOST LIKE HE IS NORMAL (WHATEVER THAT MEANS) . WE ARE TRULY BLESSED TO HAVE HIM THAT HAS NEVER BEEN MORE APPARENT THAN IT IS NOW.
IT IS STILL SO HARD TO THINK OF FRIENDS THAT HAVE LOST A CHILD OR SOME SIGNIFICENT PERSON RECENTLY. I NEVER KNOW EXACTLY THE RIGHT THING TO SAY BUT DON'T WANT TO SHY AWAY EITHER , SO ...TO JACK AND LAURA, JIM And RACHEL, AND NIKI .....I LOVE YOU GUYS AND I AM THINKING OF YOU EVERYDAY!.................
THE LIGHT THE NITE WALK WAS COOL, OUR FIRST YEAR......I WAS A BIT DISAPPOINTED THAT WE DIDN'T GET MORE SUPPORT FROM FRIENDS AND FAMILY,BUT WE DID RAISE 800 DOLLARS AND THAT WAS MORE THAN IF WE HAD JUST NOT DONE IT AT ALL. I PLAN TO DO THIS EVERY YEAR FROM NOW ON AND WILL ENDEAVOR TO GET THE GUTS TO PRESENT THIS CAUSE
FOR WHAT IT IS..... WHOLLY NECESSARY . I WANT TO THANK ALL THOSE WHO SUPPORTED US IN PERSON OR IN DOLLARS . I APPRECIATE IT MORE THAN YOU KNOW.
JAKE'S TAIL BONE INCIDENT SEEMS TO HAVE NO LASTING SIDE EFFECTS. HE HAS NOT BEEN IN PAIN AT ALL SINCE THE DAY AFTER. HE CONTINUES TO BE MY HERO AND I AM SO PROUD TO BE HIS MOTHER. HE IS THIS INCREDIBLY COMPASSIONATE INDIVIDUAL, CREATIVE AND BUSY AND JOYFUL ...SEEMINGLY ALWAYS HAPPY ... A PERFECT GIFT.
HE GOES TO ENDOCRINE , BONE MARROW CLINIC AND GETS AN EKG ON FRIDAY SO IT IS SURE TO BE A BUSY DAY. TUESDAY NEXT WEEK WE ARE SUPPOSED TO MEET WITH THE MAKE A WISH VOLUNTEERS TO DISCUSS JACOB'S ULTIMATE WISH . ( DISNEY WORLD ) NONE OF US HAVE EVER STEPPED FOOT ON A PLANE SO ITS BOUND TO BE INTERESTING IF AND WHEN THAT HAPPENS.
I CAN'T THINK OF ANY MORE NEWS SO BE GOOD TO EACH OTHER AND SAY A PRAYER FOR SOMEONE .THANKS FOR CHECKING IN ON US....
LOVE,
DANETTE

Monday, September 22, 2003 10:18 PM CDT

Here's a quick update .... Jake surely keeps my life intesting... On Friday afternoon , I was helping put the kids (Jake's class) down for nap . Jake is a really good sleeper and is usually asleep as soon as his head hits the pillow ( his teachers really like it that way too , I bet....lol) Well this time he was being incredibly goofy ,and had jumped up in the air and went down straight on his bottom. It looked like he had slipped on a banana peel!! He started wailing, I took him to the bathroom and checked for God knows what ..blood , bruising etc. Nothing ( Thank God ) . But , he was obviously was in pain . He was breathing very strangely ( like he was trying to deal with the pain). Jake never complains but he did say his "whole butt hurts".. (quit laughing ya'll that is what he said!!) "Even the inside" he went on. So I called the doctor who is thankfully just around the corner .He was not there but, we got in shortly after he returned from lunch. Jake likely has a broken tail bone . There is nothing anyone can do about it.
He got a couple doses of tylenol that day and has been doing really well since . So,
it may have been just badly bruised. Jake is most assuredly ONE TOUGH LITTLE FELLOW . His pain threshold is incredible .
In other news, he goes to endocrine ( growth issues ) Next Friday ,Oct. 3rd, as well as BMT clinic for the regular stuff.He is doing pretty well on 7.5 mgs of prednisone a day now. Hopefully he will continue to do so and we can keep going down little by little. He topped the scale at 52 lbs on Friday...ughhh.
We are also getting very excited about the "Light the night" walk this Sat. !!! Thank you to all who plan to participate !!! I hope we have many supporters to walk with us ( hint ,hint ) !!
That's about it for now... Please remember Connor's parents, family and friends . Connor entered heaven's gates almost a week ago . He was only 3 yrs. old.
God bless you all,
Danette

Thursday, September 18, 2003 7:16 PM CDT

Hi everyone,

I will attempt an update ... If you read the last entry , you might have guessed how depressed I have been feeling. along with a sort of guilty feeling about being less than joyful all the time.
In reality , I have every reason to be joyful . At least as compared to some . Also on the reality side, I am exhausted from moving full speed for about 19 hours a day . That probably doesn't help .
Yesterday, I received news from yet another friend whose battle with JMML has come to a tragic end. It is so hard . So profound .... We are like family. Many of us will never stand in the same room but we share SO much in common.We all hate JMML . Hate its difficulty. Hate its choas.Hate that our children have had to endure its torture. Connor was but 3 yrs. old . 3 yrs old ( does anyone hear me ? ) I cried all night off and on. washing dishes crying . I went to bed early ...after work , the doctor's visit and this heart wretching news , I was good for nothing anyway.
I have prayed for peace for many friends and I truly know how special a gift that is...At the same time, it seems so truly insignificant ( sp?) . I can only imagine the pain . And yet, I am so grateful that I haven't had to experience it first hand.
There seems to be nothing more I can do to help . Maybe that is the worst...this mixture of helplessness, confusion and guilt.
I tried very hard to make it make sense. I lost a child once , a long , long time ago.....miscarriage has its own set of troubles. SO many
unanswered questions.... What could have been done differently? How would it have changed my life , as to who I am now? Nobody has the answers , you just are forced to either move them aside or keep going over them and over them,time and time again. My family never mentions it ...like it never happened. So insignificent ? To them maybe but why after all these years do I still remember and still wonder, still look for answers. I can only imagine. Now, I know it can't possibly be the same as a child you have spent time with, held all night with a fever, fixed scraped knees, watched hit that first Homerun....the one you would trade your own life to spare theirs.....................
I have had 3 children since that long ago nearly forgotten event, for this I AM truly blessed.Oh, they drive me crazy~!Make me broke , make me laugh. make me cry. hurt my heart. tick me off and everything in between ...but still they are the hope of a future . YOU know, the
one that exists beyond cancer, heartache and loss.The hope that they will make a difference . that they experience love.Are good parents . Ok , I have to finish this.....

Jake went ot the eye doctor yesterday... Eyes are
essentially the same . Patching needs to continue. We should come back in 3 months . The cataracts are stable . Surgery time unknown for now . The current is 20/30 and 20/40 . Maybe as good as it gets , due to the scarring from the corneal ulcer (may 2002 ).
Jake also got his bone age x-ray and chest x-ray , as a part of his yearly studies . those results next week or so.
Jake is scheduled for endocrine clinic for evaluation of hormone function( basically his height is nearly unchanged in the last 2 years)on Oct.3rd. Currently is under the 5 th percentile on height, though the hormone level seems normal . He will also see the Bone Marrow Transplant clinic that day.
As a last note: Jake and I will be walking in the Leukemia/ Lymphoma Society's "Light the night "walk Sept.27, I will be carrying a red balloon signifying "supporter". Jake will carry a white one
for "survivor" . How I long to see all those white balloons!!! There should be so many more ... Colby and Connor will always survive in our hearts.
Please stop by and say a prayer for these families
( links above ). Until next time.............
Many blessings and thanks,
Danette

Wednesday, September 10, 2003 9:28 PM CDT

Hi all,
It's hard to put pen to paper sometimes. I have so much to say, yet nothing at all. I am thankful that I have found a job. Yet long to be with "my little man" more . He's almost 5 yrs. old ....terribly hard for some of us to believe. The nightmare of cancer lasted so long that I wondered if we'd ever wake up . Believe me, there is so much to it, that nobody can quite understand the life we led , nor do I want them to.
From the frustration of the medical system and the generosity of strangers. The strength (that I never knew existed) within us to the overwhelming feeling of helplessness. Fear vs determination.
I still see in my head a baby , big as a balloon...swelled from fluid accumulation...to almost unrecognizable. I see the room , the machines ...the blank expressions ... the people walking around blank ... too hurt to " feel " anything . The sickness in the pit of my stomach, everytime another piece of bad news would come along. sleeping half the day away ...the only way to cope with SOOO much . The horrible thoughts that came and went no matter how much you tried to force them out . Not being able to express them to ANYONE , holding them inside ...hoping that they'd never come back .. trying to be strong enough for us all. falling apart on the inside . Not having the answers to the questions the kids would ask.
wondering what the future might bring . And if your life will ever resemble normal. almost like you are living someone else's life ...can't be real kinda thing...
The years are spent trying to repair the damage done . The anger about what's been lost . the gratitude for what's been preserved . the lack of energy and money . The abundance of love and joy ( from every little thing ) .the pain of seeing some lose the fight and the guilt that we haven't. whoever said life was fair? Who decides this stuff? Is it O.K. to do this ? Who would I have been if I weren't chosen for this journey? Surely not the same . I remember a time when I wouldn't ever "rock the boat " about anything. Now ( smile ) I have learned to stand up for more. Some good things CAN come from situations really bad.
strangely ... I'm leaving this up ( instead of deleteing it ...like I have before ). I want so hard for people to understand ( not out of pity, but out of love). I probably will regret pouring this out like this but......too late
Danette

Thursday, September 4, 2003 9:22 PM CDT

Hi all,
This is just a quick update ... Jake's donor count is 100% !!!! That's always the best news of all !!! Also the forementioned " weirdness" ( concerning the cells ) has been resolved rather nicely. Turns out that Jake had a premture cell in his periphal ( never can spell that ) blood sample . Although it doesn't belong there ( it should mature in the marrow instead) it isn't like it is a blast cell ( believe me I asked ) I had it al explained and it happens very rarely but when the marrow is making cells quickly ( like during an illness) it can happen. Because Jake was not feeling well on Friday ,they think that did it. So, I was confused and concerned (OF COURSE !!) but Ms.Cheryl ( HIS PNP , that knows him almost as good as me) saved the day by answering my gazillion questions very throughly. See I like everything explained not just a yes/ no answer.
School is going well. I'm exhausted , but the sound of a paycheck will cure that pretty quick I bet. Jake is well. Happy . We are not exactly appreciative of the long days but I visit Jake's class a couple times each day and when it gets more routine for us both , I'm sure we'll manage it all just fine.
I got to go for now .. I appreciate all the concern and notes . It is certainly nice to know we are not alone .
Many blessings to you all,
Danette ...... *****Please remember to check in on the kids links ( top of this page ) if you get a chance and say a prayer for those families ... many obstacles to overcome

Saturday, August 30, 2003 3:38 PM CDT

Hi all,
I wanted to get in an update before school starts for me and Jake on Tuesday....
I just re - arranged my entire school schedule because , Thursday, when I was at Jake's school for orientation, I was told of an immediate need for some fill -in personnel there. In order to be of the most assistance , I needed to do most of my class time on the weekend and at nightime. it took some doing but "Mission accomplished" . Because of our current financial situation I couldn't afford to turn it down, since there has been NO other offers thus far. I could hold out but I love being with little people and at least, I can peek in at Jake throughout the day. I don't really have all the details about it yet( NO DETAILS actually ) so please pray what is offered is adequent( sp?) compensation to AT LEAST make a dent in the money woes around here.
I will still be a Full time student ( a requirement as far as my grant goes..)and I can't afford to put it off. The sooner I finish school the better for our whole family. So I don't have to tell you how much free time I will have ( NONE ) but I can do it . Shoot, I HAVE to do it , really no other options . For those of you who keep up with Jake's page , you might of guessed Jake's Supplemental Insurance decision was NOT a mistake ... Basically, the determination was that Jake is legally disabled because of the severity of his diagnosis and the many long time health concerns he can and is experiencing. BUT , according to current legislative rules and funding , we make TOO much money to qualify . TOO MUCH MONEY??? They couldn't be farther from the truth ...arbitrary rules that apply to everyone regardless of medical issues and expenses ( which BTW , account for about 600 dollars per month ) . We were completely disqualified because my husband got a $1 / per hour raise .... Does anyone that passes these laws know how to do math ? NO and they couldn't care less . It doesn't matter if it works for my family or anyone else's . They have their mansions , 6 digit salaries and have no idea how it is to sit up nights wondering if you made the right choices that will give your child the best chance to live a long happy life ...wondering deep inside if it's somehow your fault this happened in the first place....wondering if you'll ever see them grow up , have children and choose a wife , a career...wondering if they will be more compassionate or more "hard" because of all their issues...Makes no sense ...none of it . But for some it doesn't have to , it's just the way it is.. Well, It Sucks !!!
I'm gonna get off that ,I'm getting upset again and that doesn't help....
Jake went to the doctor yesterday, I scheduled early because he had a runny nose , raspy voice , no fever but he complained about a headache Thursday night. He and Daddy were going out of town ( first time away from Mommy ...2 1/2 days :( ) so,
I just wanted to be sure there was no problems . Doc said , Everything looked pretty good ..give a decongestant , it will probably go away on its own ...viral thing . His weight was up by 0.8 lbs . but she said to cut the prednisone by 2.5 mgs a day !! The GVh issues ( mouth and lips are a bit better , skin looks very good and eyes a tad worse) but all are stable . We will start the new dose when they get back in town , so as not to confuse Dad. They did the FISH test ( donor status thing ) results on that in about a week.
I forgot to mention that his Growth Hormone came back WITHIN NORMAL RANGE although I am happy about taht I still want to know why is he not growing . The doctor was obviously curious too because they are working on an appt. for endocrinology anyhow. She said It not like it is an emergency and it could take months to get an appt. but it's a good idea to have Jake evaluated . I'm glad about that . I want NOTHING overlooked that we can do something about.
Speaking of... Jake's blood work came back a little concerning ...weirdly unexplainable ( at least by me ) ... Unfortunately , I will have to wait a few days to get answers because by the time I saw the lab work ( the results were sent to me via e-mail ) it was after closing time for the clinic , which is now closed until Tuesday. You can bet I already e-mailed the PNP and asked her to check everything out and contact me regarding a hopefully very reasonable explaination for the results . Until then , I am trying VERY hard not to get worried . Lord knows I want to forget all about the very bad prognosis we were given concerning Jake's diagnosis but at the same time I NEVER want to look back and say what I should have/ could have done differently to keep him out of harm's way. Enough said for now .... Please pray for us all , we have had enough for goodness sakes !!!
Thanks for checking on us, don't worry ..we ARE "keeping our chins up" and trudging on albeit more slowly than we would like to. Remember to count your blessings , say a prayer for all these kids and families in the midst of very rough waters . ( Jared, Connor S. ,Dylan , Dustin, Conor F. , Shanna and TOO many others too !! ) .
Many blessings and much thanks for caring,
Danette

Sunday, August 17, 2003 5:29 PM CDT

***** ADDED ALMOST ALL NEW PICTURES*** 8/20/03,FRONT PAGE AND PHOTO ALBUM !!

Hi all,
I have been extremely busy lately . What else is new huh?
The kids start school tomorrow morning ....yeah !! I am anxious to get things under wraps , as life has been very choatic here this last week. Jake and I have 2 more weeks off from school( not counting my night class that I finish on Tuesday ).
I am a little apprehensive about my ability to hold it all together . I never seem to know where I will get the time from to do all this stuff but somehow , someway it works out.
Let's see, Friday we had a doctor's appt. Overall Jake has been doing really well. His mouth has been looking really rough but his skin and eyes are stable. His weight is another story that I don't like to get into because it stirs up strange feelings for me. He is up to 50 # now . For me , I sometimes try to remember what he looked like before steroids, so thin ( relatively speaking) , no glasses and NO horrible stares. That was 20 pounds ago !!
All his clothes are getting tighter and tighter. I asked about where he is on the scale thing ( percentile thing ) . Ms. Cheryl (his PNP)said they were checking his Growth hormone production anyway but that she would chart it for me because the results would take several days to come back. I said that if he would grow up ways some the fact taht he has grown sideways so much wouldn't matter as much.
Jake is 99.1 cms ... essentially according to the chart he is below the 5 n height and above 95 n weight for his age . To make matters worse he has only grown 8 cms. in 2 years. something to think about. she will let us know, for sure( as per the test results ) but she said we will likely wind up seeing an endocrinologist about this in not so distant future.
These tests are the beginning of his annual "work up ' where the check everything to compare to previous functionability and normal values . We were to return this Wednesday for EKG/Echo and a bunch others but due to other other activities unknown to us until recently we have choose to put these off for a few more weeks. mainly I am intersted in the donor studies, renal function evaluation and his bone age x-ray results. All of which will be done early Sept. , good thing my patience has increased over the last few years !!
Sept. marks 3 years since Jake's second transplant . We never offically considered him in remission until after the second transplant ,( the first one was unsuccessful at erradicating the leukemia) ,so Sept. 25 th truly holds a warm place in our hearts.
I have to close for now , much to do yet for tomorrow's "first day of school". I'll leave you with his blood count numbers, which all look pretty good ( for those of you that don't understand them ) .
WBC 11.9 ( UP A LITTLE ... ? ),neuts 50GOOD) , LYMPHS 41MONOS 7 DOWN A BIT ...YEAH!!) , Hgb 14.5 PLATELETS 312 , GLUCOSE 80 , TRIGLYCERIDES 249 ( ANYBODY WANT TO TELL ME HOW CONCERNED TO BE ABOUT THIS?) . HIS BUN STEADY CLIMB TO 19 :0( , aLL OTHER CHEM PANEL O.K. , SOME QUESTIONABLE.
Many , Many blessings to all esp. Connor, Shanna, Jared and the many other families that have been affected by the horror of cancer.
Love,
danette

Saturday, August 9, 2003 11:15 PM CDT

Hi all,
We had a great time in San Antonio ...there is alot to do there. It's the only true place we have been on vacation EVER . We have gone 3 times now. We always have FUN. The kids were way bummed because we had missed Arkansas ...( I have heard it is beautiful there ) but we lots of fun doing San Antonio anyway.
We swam in the Guadalupe River on Sat. after we arrived and got settled,Roasted hot dogs and chased armadillos. Sunday we moved the travel trailer to a less expensive , less congested park a few miles away ( up river ) ,then we went to the San Antonio ZOO .They had lots of new babies there and it was far nicer than the Houston Zoo, that we are so accustomed to. WE rode the train there then went back to camp and grilled burgers before retiring early.

Monday ,we got up early and went to Fiesta Texas ( 6 flags theme park) . The big kids loved all the rides... very short lines but VERY HOT. Jake loved the "log ride" ... we rode it over and over .Mostly, I stayed with the Big kids and rode the rollercoaster stuff , while dad and Jake played in the kiddie park. We switched a bit and did the water type rides together , but dad doesn't like rollercoasters and I do... so it worked out nicely. AND the laser light show they do at the end of each day is Fabulous!!! Jake said that was his favorite part of the whole vacation !!!
Tuesday ,we went to Sea world .... (hot ,hot day )but the lines were short ,the shows were good and because we got a return day free ,we didn't feel rushed to squeeze everything in , in one day. Only down side was that Jake got a blister on the side of his face where the GVH has thinned his skin , despite the sunscreen stick being applied. ( I focused more on the back of his neck ). I tend to forget about the two spots on his face because they are so small. ( I put triple antibotic on it several times since and it has already healed up, pretty much ).
After finding out that we had up to a week to use the second day passes , we decided to have a more restful day on Wednesday, before doing the theme park thing again. So, we slept in a bit then rented some tubes to coast down the river on. Jake had his own tube with a bottom . His was tied on to dad's . We sunscreened up , packed a bag of cool water and the sunscreen stick for reapplies..... 4-5 hours ride, they said . ...the first 2 hours were wonderful .. we got out and explored a bit on a natural waterfall space ...BEAUTIFUL!!! and COLD!!! Then, we headed back to the river( and tubes),all of us were wishing the ride was over..... too long ,too hot and everybody got sunburned (Except Jake ). My oldest son and myself were miserable .We have fairer skin than Samantha , dad and Jake so we took the brunt of the sun. I got slightly sunsick and went to bed early ,while dad took the younger two to the river to fish. Jake caught 1 fish and would not let dad clean it . He is so funny. dad tried to cut off the head and clean the fish but Jake had objections about that!! Then dad tried convince Jake that the fish needed to be "gutted" at least and Jake said " O.k. dad , you can gut him but don't hurt the little guy " Oh my goodness, we laughed and laughed!!.
By Thursday , I had recovered enough to trudge on , but it took an act of Congress to get Richie out of bed. He was burned and miserable and did not relish walking around Sea world again. Meanwhile, Jake and Sam were anxious to get there to see the shows we had saved for the second day. I loved the rollercoasters there and rode them with Sam . We all played at the wave park ,a little. Jake rode down the BIG body slides all alone ( they won't let you ride together,no matter how small the kid is ) . He loved it . He feed the dolphins some fish .That was way cool !!! He liked the shark tank alot too.He didn't want to leave but it was 7:30 and Richie was REALLY ready to go . He was a great help this weekend ..... pushing the stroller ( his choice) , playing with Jake in the water and once even got out of line to take Jake to the potty ( his choice ) .He did, however ,fight with Sam quite a bit ( normal ) and talk on the cell phone WAY more than I liked but at least he kind of contained it to when we had finished our family activities for the day. Having an ALMOST grown child is an adventure , not always a fun one and certainly not an easy job by any means. This trip sort of gave us all a chance to reconnect . At home ,we all tend to do our separate things .It was very nice to have us all together doing the same things ....as a family !!!
We decided to skip going to Llano this trip ... out of money, needing our own beds to sleep in and a vacation from our vacation , as they say ! We headed back Friday , as soon as we could get everything packed and ready to go.We arrived home about 5 pm ...exhausted... happy to go and happy to be home !!!
It is very late and I am still sorting out and unpacking things so that's all for now ...
Love,
Danette

Friday, August 1, 2003 7:43 AM CDT

Hello everyone,

I just wanted to get in this last update before we head out to San Antonio. We leave 5 am tomorrow morning . Boy am I ready to relax and enjoy my family.
With teenagers at home life is always in an uproar and this week is certainly no exception( Even moreso than usual.) My 17 yr.old is entering his senior year in high school and that means choas for his parents. It's personal and I won't get onto it here because I feel it's not exactly appropriate but please, please pray that we all get through this emotional rollercoaster ride with our sanity and his future still intact. enough said?
Jake is SO excited about going to Sea World . All the things he loves most all curled up in one... animals , water, and camping !!! WE plan to be gone for 8 days or so.After Saturdays 5 hour drive to San Antonio . We will likely just hang out at whichever park we find to camp at. Sunday's plan is The San Antonio Zoo ( I have heard it is fabulous and I can't wait to take JAKE ( A.K.A. animal lover extraordinaire !!).
Monday , it is on to fIESTA texas Theme park . TUESDAY and Wednesday SEA WORLD !!! WE got some GREAT buys on
both tickets and at Sea world the second day is free !!!
Thursday we will likely leave and drive to LLANO , where our brother -in-law has a cabin smack in the middle of nowhere ( ahhhh, peace and quiet !!) The Llano river is nearby and we probably will play in it a bit each day . It is a nice flowing river that has a few "rapids" to ride.We went there 3 years ago , just before Jake had his last transplant.We usually don't go there in the summer( it's a hunting cabin) but last time we did the wild flowers were everywhere and absolutely gorgeous !!! We will be heading back , some 6 hours or so on Sunday or Monday . Coming back to the school rush, senior pictures, haircuts, doctor's appts and bills ( ahh, reality ).
It looks as though there is no mistake about the insurance ( as mentioned in my previous entry). I haven't received any letter as of yet . As of today we are on our own, as they say .Our primary insurance ,thankfully still intact.I just have to worry about all the co-pays now,as it is an HMO, and there is no cap on out-of -pocket expenses , in that regard. We will be doing O.K. with it ,IF Jake doesn't get sick too often. There is really no way to gauge how often he will need to go to the doctor. sometimes , it's 1-2 times a month sometimes 5-6 times a month. HMMM 6 times 30 plus meds, parking fees ....OHHH, not again let's not go there...
ONE REALLY good thing to look forward to when we return is I got a call from Make -a -wish foundation. They want to come to our house after we get back and interview us for Jake's wish. One thing I found out is that we have got to get on the ball... We had wanted to go (Disney Land hopefully Jake will pick there, it's all he talks about , in terms of wanting to do something special like that ) next summer since Jake will be in Kindergarten shortly thereafter. But the volunteer that called said that if my oldest turns 18 before we go, they don't pay for him to go along. Richie was 13 when all this started and I certainly don't intend to leave him behind and I can't forsee being able to pay for it myself so..... looks like we will go around Thanksgiving or Christmas when the kids and I get a holiday from school. That will be exciting , first time for any of us on a plane , Jake and Samantha have never been out-of -state and DISNEY LAND !!... wow , every kids dream , I think . Thanks to all those on JMML support group who have hassled me to call for the past year (LOL!). We almost missed the boat !!!
As far as Thank you's go , I couldn't be more thankful to the many , many peoplw that have giving of themselves to help us immeasureably over that past 4 1/2 years... remarkable what can be accomplished . I don't want to leave anyone out but here are just a few... Thank you to Dr. Hay M.D. for your intuition and expertise in getting a quick diagnosis. Thank you MOM and DAD who continue to listen as I cry my way through the rough times and who have helped us time and time again financially. Thank you to Jerry's parents who cared for our children to near physical exhaustion in our absence , amongst other things . Thank you to our pastor and his wife for giving us hope ( an immeasureable gift ). Thank you to the Epler's for their true heartedness, love and support. Thank you to those who visited and called us during those lonely, lonely weeks and months in the hospital. Thank you to EVERYONE that gave blood in Jacob's name , to those who have and continue to pray for Jake's well-being. Thank you ,obviously, to all the medical staff at Texas Children's (especially Dr. Krance ) who never gave up to save my baby. Thank you to Jake's sister who willingly endured many, many procedures on Jake's behalf . She gave bone marrow, donor leukocytes (a 5 hr. retrieval process ) , and stem cells, ALL TO SAVE her brother. To everyone that IS courageous enough to be a bone marrow donor ... Thank you for giving someone else a second chance at life ! Thank you Jesus , the one who has given us peace and courage.
Have a very good week all and be a blessing ,
Danette

Thursday, July 24, 2003 11:12 PM CDT

Hi all,
I tried to update last night ...late. basically I was half through and got up to go get a drink or something and Jake kindly finished for me by closing the window. He wanted to play a computer game , a new fascination and took an opportunity to help me get off the computer faster..... Stinker !! I was too tired to begin again so I gave up "my turn" .
Jake went to ENT on Monday , we arrived late because we were given an incorrect appt. time. They never like that but I was told 1:00 , not 11:10 . Anyway , we wereseen fairly quickly by the PA . I gave her the low -down about Jake's ears and recent meds etc. She looked in his ears and they were clear, tubes open and functioning well. I was concerned about a repeat infection , because I couldn't figure out how this one started in the first place. I asked about his custom plugs and if they needed to be replaced. Maybe his ear canal got bigger and the water was getting in despite our using them faithfully.She said could be but unlikely. Since I didn't have the plugs with me we couldn't be sure. But before I left we both came to the consensus that he had "sucked up" water through his nostrils, while swimming , just a week prior to the infection. He was wearing his ear plugs and the water had no escape and became stagnant within his eardrum. = ear infection . Makes sense I guess. Jake has to finish the massive Augmentin prescription.Has ear drops for awhile longer and then he should be good to go.
Oh, our vacation got scratched, we were supposed to be in Arkansas as I type. We were sharing some expenses with Jerry's parents to attend a family reunion there but a few weeks ago Jerry's boss said either Jerry could go or Jerry's dad ( they work in the same dept.) but not both as per dept. rules. Jerry's dad had his slip in first and we couldn't afford to go on our own so.... we are planning a trip to Sea World , San Antonio ,first week of August. Jerry's parents are loaning us their travel travel to help cut down on hotel/motel expenses. It will be fun just to get away forom the daily grinding mill. School starts just a week after we get back and time is flying by.
It appears that I will be job hunting as soon as school starts . Our secondary insurance that has been a big help in covering medical co-pays is being cancelled. I am still holding out that maybe,just maybe,they made a mistake and I
will get a letter stating it will continue . I counted today, Jake has 9 medications that he has filled routinely every month.10-40 dollars each (not counting ones like
for ear infections etc. ) He sees BMT an average of twice a month ,co -pay $30 each visit .Plus eye specialist, ENT, etc. etc. Medical cost are killing us financially. Though my husband makes decent money , one income , 2 teenagers and 1 chronically ill child just doesn't cut it. I pray there presents another feisible way, I really will not enjoy being away from my family so much. sorry about complaining , I think our government social agengies must
be really screwed up when their guidelines eliminate support for families struggling to care for medically needy children while hand holding mothers who choose to continually have baby after baby that they can't support .
And NO!!~ that is NOT an ad campaign for abortions. I'm not
against helping people in time of need. I am talking about people that make little or no effort to prevent pregnancy expecting that working class people will take care of their children. OK....... off the soap box.
You don't have to agree , people, but it's MY web page and you don't have to walk a mile in my shoes.

I got to finish this up.
Take good care of each other , Be blessed , and remember to pray for all the children most especially Connor, Shanna, Jared, Dylan and Dustin.
Danette

Friday, July 18, 2003 8:34 PM CDT

Hi all,
Since Jake visited the oncology doctor On Wed . I thought I would update the goings on....

On Saturday it was a month since our friend Colby made his way to Heaven to live cancer -free forevermore . I so wished that he could have been freed here .He was truly a blessing to many, many people. Samantha, Jake and I picked out a bundle of balloons to soar to heaven , honoring his fight against JMML ... very courageous , very graceful.
Please remember his family , as well as Riley's , a little girl that faced JMML too and passed away a few weeks later. They both shared a birthday , as I recall... Valentine's day . Maybe heaven needed a couple of cupids to show people how to love.... unconditionally, just as they gave it.
The passing of these two proved to be very significant to all who knew of them . Big reality check for all parents who have had a child diagnosed with JMML . Has made the last several weeks to be a challenge in "keeping your chin up". That's always the aim, but we are not always close to the target.
I guess it took us getting some "good news" for a change to lift our spirits . Conor and Shanna are doing great .. Let's all pray it stays that way . As for Jake...
Jake has been battling an ear infection for several weeks .. Third antibotic ... third trip to a doctor and now is on a whopping 500 mgs 2x per day ( 1000mgs !!) of Augmentin. It's actually the preferred drug but in times past, it was one of the few medicines that he could not/ would not tolerate . ( he vomits it !!). Well I decided that if he needed it , he would take it and asked for pill form ( I crush them and put in syrpalta ( sp?) , just as I do the penicillin and prednisone. I have better luck that way).Oncology set up an appt. to see the ENT specialist on Monday ,since this has lasted so long.
His mouth and skin (GVHD ) look better and his blood counts were very good. So hopefully, we don't go back to oncology for month. No med. changes yet ( currently 10 mgs/ day prednisone ) . Jake has the steroid puff in full force again.. you can always tell too....when people start pointing and whispering in stores ( ugh) , if they only knew....
I try real hard to forgive them, although it makes me angry and upset . Jake has the most wonderful personality (most of the time...LOL) , I only wished they would see THAT instead of his puffy cheeks and tummy.
That's it for now ..
I will attempt the picture update soon so check back for new photos.. Here's the blood counts :
WBC ... 8760
ANC ... 5340
HGB 14.4 !!!
SEGS.. 60 (NORMAL)
LYMPHS 30 (NORMAL)
MONOS 9 (HIGH)
BANDS 1 (NORMAL)
Platelets 423,000 (very good )
All chemical panel .(pretty normal , with only very slight variations )

Remember CONNOR, DYLAN ,DUSTIN AND SHANNA (in the heat of the battle ... all newly transplanted and in the hospital. Also, check out the links at the top of the page whenever you get a minute.
Many blessings all,
Danette

Friday, July 11, 2003 9:11 PM CDT

Hi all,
My major class for the summer is over . I still go one night a week until the regular semester begins in Sept. , then back to school full time. Boy, I am really glad for the break. THE past two weeks have been a nightmare with all the goings on ( illness, doctors , finals , camps etc. ) I feel like it has been a blur......
Jake is getting better from the ear infection he has had for more than a week. I took him to the pediatrician last Thursday and the drops and oral antibotic didn't do the trick. It's better but far from gone. I took him back today , they changed the antibotic and put him back on drops too.
Yesterday I took him to the eye doctor in Houston , I was sure that he was having additional problems but the doctor checked and his vision was actually a bit improved !
The cataracts are stable for now so we are clear from there for a little while. He goes to the oncologist on Wed. , I e-mailed her about his ears to give her an update about that. We are not accustomed to going to the pediatrician just yet . They are a WONDERFUL crew but we usually go to oncology enough that the peditrician isn't needed that much.
For those of you that don't know , no matter how many times we go to oncology ,they do a VERY through check of Jake EVERY SINGLE TIME. It's much like you would expect during your annual check up and then some.... only it's every week !!! Time consuming but worth the comfort of knowing that they leave nothing unchecked.
This week I have been unusually teary ...not in a bad way...I have just been mulling over the fact that my baby is almost 5 years old.The many,many obstacles that he has overcome to get here...It all takes on a new meaning when you realize exactly what(who) was almost taken away . Jake is such a blessing to us and I dare say to many others too.
I want to Thank God for allowing him to stay here with me .I am so very proud of him .
Last week when I wasn't feeling well, I was resting on the couch, Jake wanted to cut up some construction paper. So I gave him some scissors.Then he wanted to make a heart, so I drew the line so he could cut it out. About 5 minutes later he comes from the kitchen with a raggady heart on which he printed his name backwards J bunched up a and c and o and a b. I cried . " I made you a present Mommy " I'd honestly would trade a fat diamond ring for that raggady heart. He is such a blessing.He is full of compassion and concern for others. God really must have a plan bigger than I can comprehend.
I got to close now all, getting a bit tired here.... Please ,please pray for my small friends ...Shanna, Jay, Connor , Dustin and Dylan ....I believe prayer changes things.
I'll be adding new photos soon , as well as,new links to kids ( and parents )
that need an encouraging word to keep up the fight.
Blessings,
Danette

Saturday, July 5, 2003 10:56 AM CDT

Hi all,
I decided that since Jake was snoozing the morning away I would update ....
It's 11:00 AM here and yes Jake is still asleep. We slept late (9:30 ) too !!! Woo Hoo !! doesn't happen often enough , that's for sure.
Let's see.... the beginning of the week was fairly calm. On Wed. though, Jake and I were very tired so we called Grandma to see if she would watch Jake while I went to school so that we could hang out at home a little longer ( he has to be at school by 9 am, when he goes) and catch another 1-2 hours of sleep. Good plan except that when I woke him up at 10 (he's a late sleeper by nature)to get him dressed to go see Grandma he had "stuff" draining from his ear.
Jake has had the tubes for about 2 years and NEVER has anything drained from them. I called the doctor to be sure I had nothing to worry about which seemed to be the case but I didn't like how much was coming out. 2 sets of doctors both said it was normal and not to worry unless he complained of pain or had fever.
Well that only served to confused me because Jake doesn't complain much (about pain at least ) and he had a headache and had unexplained fever the week before , as you may recall. So I went ahead to class ( having missed way more than I needed to ).
Also that morning our vacation ( aka ..family reunion ) to Arkansas got scratched ( Jerry very upset) . It had been planned almost a year and now two weeks before we were scheduled to leave it was cancelled. His boss would not approve it because another person from his dept. (Jerry's dad ) had already had an approval for that week and the policy is NO 2 people off at the same time except in emergencies... a family reunion . Jerry and his dad cannot both go because they work together. understandable but still upsetting... stressful too because this family really needs a week away from "stuff".
Ok so Wed. afternoon when I got home from school and I was still tired .I figured it was from the stressful morning. I laid down with Jake ( also strangely tired ... ear? ) We slept for 2-3 hours . I woke up with 101.4 degree temperature. I called in to church ( it is my responsibility to teach 8-12 yr.olds ) I said no good for me to come . I feel like a slime ball now having missed 2 weeks in a row ( sam sick last week and she obviously shared some yucky germ with mom). Thursday came ..still too tired to go to school ...fever still coming and going as is the headache. I also had to take Jake to the pedi, his ears worse and he won't let you put in the ear plugs at bathtime. I am not about to go the long weekend ,guessing about if his ears are OK. The pedi. said ear infection .He needed help because of his immunosuppression. She gave us a prescription for ear drops as well as Vantin. I've never heard of it ,but we have limited choices because he already takes the Penicillin class of drug everyday for protection.
I felt somewhat better Thursday and even better Friday. We went to Mervyn's to get Sam the stuff she needs for camp (she leaves Monday !!!). We lost Jerry in the mall ( wasted 1 1/2 hours looking for him !!! ( too long a story to tell ). We went to see Nemo on on Matinee . We had promised Jake and then we almost missed it. (It was good too)! Then off to Wal-Mart to get the toiletries for Sam's trip and goggled over the T.V.'s that we can't afford. ( Our internal antennae is going out and it's a stomping match to get it to come in during videos ,let alone regular programming). Well what do you know,I got sick there and had to go to the bathroom 4 -5 times that hour. Come home and 4-5 more trips to the throne ...yuck I lay down and watch a movie before I fall asleep leaving the crew to fend for themselves...this morning feels slow but better . Jake is improving too.
Right now he is fussing at me to get off the compouter so he can play his game .. so I better close for now ... eye doctor on Thursday and ONCOLOGY the next week . My last day of school (July 11 th !!!) . Check on the kids , links up top, esp. Shanna , Jay and Connor . Also remember Colby and Riley's families...(both are recent angels!! ) Many blessings to all and thanks for checking in.......
Danette

Thursday with Sunday update at bottom of page 6/29

Hi all,
Are you surprised to see a second update this week? ... well..." A Day In The Life..." (soap opera...lol) continues ( that 's what my life feels like lately... ). I wished this stuff didn't happen to real people...........
Yesterday I picked up Jake from school early so that I could take him to get a haircut before a weekend get- away ( aka Grandma's birthday party ) . I got home and Sam was burning up with fever( nearly 103) and Grandma said she had been asleep most of the day. I was thinking a virus because a neice and a nephew were a bit sick as well . I'm glad I opted to take her to the doctor though, because it turns out she has strep throat.She was miserable and it was already 4 pm so I got on the phone and started informing Jake's doctor that I wasn't going to make it to Jake's appt. the next day. Then,I tried to call my instructor to see about some make up times for my lab work etc....no luck there.
Sam got a shot ( penicillin , I guess) and she started getting better soon thereafter. GREAT but her sleep schedule had been interuppted and she was up most of the night. By morning she was almost as good as new . Grandma kept an eye on her while I tried to get back to the regular schedule ( ha!!)with very little sleep... I went to school 2 hours then picked up Jake and went on to clinic for his visit.
Here's today's special event.....
His counts are way screwed up ( only way I know to put it) !! His skin and especially his lips look bad . He has gained nearly 3 lbs in 13 days! thanks to an increase in prednisone . His behavior was awful in clinic and hasn't been much better since the increase , a couple of weeks ago.His eyes are giving him trouble lately, too. I don't know what to make of it. The doctor says to keep him on this dose. Apart of me wants it increased so he can get some relief . But most of me ABSOLUTELY HATES this stuff !!!
His counts are :
WBC 13.01
platelets 332
Hemoglb. 13.2 diff:

82 egs.
1ands
10nos
7ymphs
Are these screwed up or what?
He seems to be "feeling" fine. Acting like a BRAT ( not my usual friendly fellow ) what to do ?.......
He goes back in two weeks one appt. to eye doctor and 1 to the BMT clinic . I guess we'll just have to go from there. I have put in an e-mail asking a few questions to the doctor ( I have many ) . Jake has had GVHD for nearly 2 years . It's not bad ( relatively speaking) but Good Grief how long will this go on? I wonder how prepared he will be for school next fall if this continues ..Will I have to start "looking around" for some kind alternative schooling for him ? We don't have the money for private school and I am getting concerned that he/we will be ill prepared if we don't get some kind of answers soon.
Frustrating INDEED ... BUT, we are in this ball game for the long haul ..."whatever it takes " that's my philosophy in life .Fall down ... dust off your pants and try again... what else can you do, right?
I'm closing this ...sleep sounds SOOO good but lots to get done before that can happen.........
Thanks for checking in on us,
Danette
Ok... just finished the update and may have found a culprit to the lousy blood counts ....10 pm Jake has a temp. 101.5 ....hummm... still running around like crazy ...strep throat maybe? a virus? who knows? life's an adventure !!! I'll let you know what happens next..lol.....

Sunday update 6/29 11pm

We got home a few hours ago. We had went to Grandma's birthday party.( A 4 hr drive ) We thought we wouldn't make it because of the interesting week...illness that circumferenced this house. Jake had a fluke fever that lasted only 6 hours or so. He never missed a beat but the BMT doctor still wanted him to get a blood culture done and a shot of rocephrin "just in case" . I got back home , only to find Sam burning up with fever again ....agh... I called the pediitrician ( same one that sees all my children and that I had just left with Jake) He said she likely got a viral thing on top of strep. I gave her motrin and fluids and we waited to see how quickly she would return to normal. late Friday night the fever leftand every body was fine ...hallujah!!! we left Sat morning for Waco about 7:30 am. we had a great time and no one got sick anymore. Jake stayed in the swimming pool nearly the whole time!!! He didn't want to leave and neither did we ...reality bites!!! everyone fine...back to school in the morning and lots more catchup work to do.... thanks for checking on us AGAIN.... I'll update when I can...
Danette

Tuesday, June 24, 2003 10:45 PM CDT

Hi everyone,

I figured it was time for an update ... Although I don't really have anything medical to report...

Samantha went last week to the peditrician to have the nose checked. He said she broke it but that it was healing nicely . It was only very slightly crooked and that he really wouldn't have it tampered with for now
because the cartiledge would be vulnerable to additional breaks ,damage etc. for quite some time and the likelihood of us really needing to have it put back in place at a later date was quite high.. Sigh.... holding our breath that this will be the end of the horse play and nose issues.

Richie ( 17 ) continues to have us on pins and needles regarding his decisions but luckily we haven't encountered any "stunts" lately. He is working 40 hours per week this summer ... he needs tires for his truck.He also
has to pay for the cell phone we recently got him. He was using mine a good bit of the time and it became too
hard to "share" it.

Jake and Samantha went to Vacation Bible school last week ...Saturday was the "graduation" ceremony . I know it's real corny but I cried !!! It's so amazing that he will go to school soon , that he is getting to "be big" ... I never want to keep him little .... Instead I am so very thankful that he gets the chance to grow up .... I am much tooo reminded how close he once came to not getting that chance.......

I did very well on the tests I mentioned on the
last update. I took another one today ...harder ... I think I did ok but not as well as the last 2. My focus has been drifting ,to say the least , just LOTS going on in our lives ... TOO much to keep up with ... I am hanging on, just 2 1/2 weeks to go !!

Jake goes back to the oncologist Thursday . The skin and lips look better on the increased steroid. But, his eyes
have been giving him more trouble over the last several days . I tried to get an appt. with the eye specialist to check it out but July 10 is the earliest they have got ... I am concerned that the steroid increase may
have also increased growth of the cataracts in the eyes.
We will have to keep an eye on them for sure....
I talked to Laura (Colby's mom) yesterday... not really knowing what to say but she is really easy to talk to. I wanted to help , say something encouraging but we just talked ... I think it was good for both of us.... she is AMAZING ... easy to see where Colby got his strength . She said they helped each other... turns out he helped many.... Forever remembering you Colby......

That's it folks but please remember Shanna ( just started transplant process) , Jay ( incomplete remission ) , Connor ( soon to go to transplant # 2 ) and Hooray for CONOR .... 100% donor cells !!!

Blessings to all,
Danette & Jake

Saturday, June 14, 2003 12:23 AM CDT

************I have added new pictures !!!! ************
( CHECK THEM OUT ) ...


Hi everyone,

I have cheered up a bit which is UTTERLY amazing considering the week we have had.... buckle up now and read on if you so wish.........


Last Saturday was interesting , I was looking forward to a break from the first week of school and to Jake going to his very first " Sunshine Kids" event. ...An Astros Baseball Game!! WE LOVE baseball !!!! We used to go pretty often to any game we could get to , no matter Little League OR Major League.. Since Jake's diagnosis , however, there has been little time for things not necessary to daily living... While baseball is tons of fun to play and watch, it's just not necessary... BUT who could pass up a chance to met the Astro crew in person? The Sunshine Kids Foundation bought us 5 passes (for our family ), as well as many other fellow cancer survivors and their families!!! It was great fun and the Astros won !!!!
The most troubling part was that my oldest son decided not only to stay home, but to cause a ruckus that required me to spend the majority of my time on the phone, while driving to the game,with several parents who were "less than amused" (understandably) at his "joke".See, he had "decorated" someone's car ...which in turn got a few VERY angry parents involved, who then decided to call the police....my "smart " son lacks good judgement on many of issues ..This time it was over (guess).... A girl..someone calling HER names...... enough said?
On the heels of that was attending a funeral, of a VERY dear lady whose whole family had been an inspiration to us during Jake's illness.. she has been battling "the beast" (cancer)
for 6 months or so and doctors recently found a space on her lung :( . Very hard watching people you love in this situation.
On Tuesday we got news that 5 yr. old Colby ( who had fought courageously against JMML ...same diagnosis as Jake ) was doing VERY poorly... slipping in and out , having seizures &/or strokes... Colby is certainly a hero . He passed away very early Thursday morning..our hearts again striken with grief , as we miss him SO much. I NEVER even got to hug him or touch him, BUT as God as my witness, he "touched " me in a way I can't describe. Laura ( his mom) and I had spoke over the phone several times . We were connected by the familiarity of the disease AND our quest to see our children through.. I sit here in tears for her, knowing TOO closely how hard she fought and how life must go on, despite how sometimes we wish it would stop because it will NEVER be the same. Many blessings to you Laura, Jack and
brother Cameron for peace and comfort ALL your days.
Ok , I got to finish this ... Thursday evening while I
was SUPPOSED to be studying ( for 2 big tests on Friday) Samantha called me crying from a friends house ( I had just dropped her off to spend the night there just an hour or two earlier) "Mom, I think I broke my nose" .. I had been running errands and hadn't even gone back home yet .So I rushed over there, picked her up and took her to the ER ( my only option at 8:00 at night ). She cried the whole way ( 45 minutes , with road construction ) off and on .She was in pain but mostly she was worried how she would look in the long run....teenagers...ughhh.
Essentially , they asked a few questions ,2 doctors shined a light up her nose , one squeezed it a little ( checking for fragments, I guess ) and one gave us an ice pack . They made her a follow-up appt. at ENT , charged us a $ 75 co-pay and sent us on our way. NO X -RAYS or anything ...ughhh.
Her nose continues to swell , looks slightly off center too. Her eyes are black underneath.So we are going to the Pediatrician first thing Monday morning. She had been doing flips in the swimming pool had hit her face in the metal side...
Yesterday, I got up with 4 hours sleep ,took the cat to be "fixed" by 7 AM ,then dropped off Jake at school , took the 2 tests ( did good on one , I think I did good on the other too ) , picked up Jake at 12:45 , made a run to Houston for Jake's doctor's visit. They increased the steroids to 10mgs/per day .His mouth and skin have looked pretty yucky lately and there is a bit of speading going on too. His blood counts were "off" a bit too.( hard NOT to be concerned about it ...at this point, though that's what I aim to do.) His has had "hot cheeks" AGAIN a couple of times, which had been away for a long time.
SO there goes my hope of this being the one and only visit this month. He goes back June 26 th. They wanted to see him next week but our schedules ( mine and his regular NP 's ) didin't co-ordinate well for that . She needs to be the one to see him because she was the only one who saw his skin and she must make a comparision in order to treat him effectively. Here are his # 's ( if you like to keep up with those...they are a cut and paste job from the"results"
e-mail, so there are many...sorry, this update too long to sort through them). I got to go now .. I am probably just as tired of typing as you are of reading so... the first one below are HIS #, second one is the normal value range( as given by Texas Children's Hospital ):
MAGNESIUM 2.2 MG/DL 1.5-2.4
AST 36 U/L 15-50
COMPLETE BLOOD COUNT
WBC 10.84 10^3/UL 5.0-19.5
RBC 4.60 10^6/UL 3.9-5.3
HGB 13.9 G/DL 11.5-13.5 H
HCT 38.6 4.0-40.0
MCV 83.8 FL 75.0-85.0
MCH 30.2 PG 25.0-29.0 H
MCHC 36.0 G/DL 33.0-37.0
RDW 13.7
TYPE MAN
SEGS 74...23-61 H
LYMPH 17...28-65 L
MONO 9....0-5 H
EOS 0.....0-3
BASO 0....0-1
ANC 8.02 10^3/UL
PLT EST NORMAL
PLATELET 379 10^3/UL 150-450
MPV 9.1 FL
LYTES
SODIUM 139 MMOL/L 136-145
POTASSIUM 4.3 MMOL/L 3.5-5.5
CHLORIDE 103 MMOL/L 95-105
CARBON DIOXIDE 26 MMOL/L 20-28
ALT 25 U/L 10-25
BILIRUBIN
BILI UNCONJUGATED 0.0 MG/DL <1.0
BILI CONJUGATED 0.0 MG/DL <0.35
CALCIUM 10.1 MG/DL 8.8-10.1
ALKALINE PHOSPHATASE 178 U/L 150-380
LDH 696 U/L 470-900
PHOSPHORUS 3.7 MG/DL 3.5-6.8
GLUCOSE 101 MG/DL 70-110

.. until next time....Take care , love each other and continue in prayer for Jake . As well as ***Colby's family , Jay ( links on top of page ) , Riley , Conor, Shanna ,and Connor ( all are facing various "not good " stages in the treatment of JMML.
Thanks for checking on us,
Danette

Wednesday, June 4, 2003 3:33 PM CDT

******Warning******
I can tell this update is going to be a bit
of rambling... not exactly a "happy" entry.
*****************************************************
I can't seem to "get it together" . Seems like my focus deserted me just when I need it the most . Already day three of this semester and I am not "collecting" anything ... despite my effort. My focus just isn't there. Not good.
My schedule is anything but relaxing, and I am having a hard time (once again)accepting the recent news of SOOOOO many deaths and setbacks with fellow cancer fighters. :(.

So much we take for granted in our everyday lives.....
What kind of shampoo should I use? how about asking someone
who lost all his hair to chemo.
Don't have time to give blood? you'll MAKE time if (God forbid) Your best friend needs some!!
It's too far to walk ?.. Tell that to someone whose been wheel chair bound for all his life.
Man where is this stuff coming from... honestly , I find it annoying when people complain over "normal stuff" .As much as I wish for normal , I'm glad of the persective that I have now. I don't often feel sorry for myself .(I'm sure I've done my share) I know SOMETIMES I have felt as if I were looking up at "the downside" . YES, there is a downside to everything AND YES , at times the upside is so far ahead that I can't SEE it, but IT IS there... It's there...

How many times have I said " I don't understand much
much about life"? I'm convinced that "some things I was never intended to understand".LIKE..even when YOU play fair not everyone will follow suit. Even when you "TRY YOUR BEST" somebody is likely to be disappointed.Even though Life moves quickly , you shouldn't always try to "keep up" . You might try slowing down to gain perspective . Some things you have to pass by,in order to make room for others.
I have to go now (before I forget to take some of this advice ).
Hug your kids (OFTEN)......
somebody (right now,this very minute )is
wishing that they could ....just once more .
Count your blessings,
Danette

Thursday, May 29, 2003 4:24 PM CDT

Hi all,
I got to make this a fast update but I didn't know when I would be able to sit and write again... So busy here lately...
Jake went to the eye doctor this morning .. I had the date wrong and had actually missed his appt. yesterday. When I called to tell them I was running a few minutes late , they told me that ..i had missed his appt. ( UGH ) I was almost to Houston almost an hour drive and asked if he could be seen if it wouldn't take all day. ( They kids got out of school today and I had to be back to Santa Fe to pick Sam up by 2.) They said yes and we actually got in and out in record time . They did all the checking and Jake's vision HAS IMPROVED !!! 20/40 both sides !! They were happy and so was I. Mostly because with the glasses and patching exercises , this was a big improvement over 5 weeks ago !! He has to go back in 2 months !! As for the surgery, for now, we will just watch and wait. The cataracts are stable and that is good.
The kids are out of school now. Richie goes to work .. full time on Monday. Jake and I are back to school for the next 6 weeks . Sam will likely hang with Grandma ( next door) and /or visit cousins etc.
We plan to go to Arkansas, middle of July , a weeks vacation with extended family ....family reunion thing. That will be interesting and relaxing , I hope. I could use a real break !!!
Jake has started naming a few letters and does pretty well with colors and numbers, though , I feel like he has a long way to go to be ready for Kindergarten... aug 2004. I feel really good about the day care that he is in and have no desire to changein any foreseeable future. They don't do the traditional pre-school. I will continue to work on pointing out the significance of letters without pushing him.... at least he DOES show an interest now !! We have time , I'm pretty sure he will be ready when his time comes.
He stills swims ALOT!!, nearly everyday. It is hot here too ... upper 80's mostly. So this helps cool him off!!
I have been yard keeping for the past few weeks . Planting flowers , watering the grass everyday,mowing the lawn etc. It 's more fun than cooking and cleaning every minute. which puts this to a close.....Laundry calls. We are going out -of town in just a couple of hours ( My neice is graduating tomorrow night) Ms Procrastinator isn't near ready!!! got to go pack . Take care and be blessed,
Danette

Friday, May 23, 2003 10:36 AM CDT

Hi all,
I copied this from a previous update , a couple of days ago, that didn't post properly. some of you got a copy e-mailed to you so it may be repetitive for you.... sorry no time to update right now...
************** I have changed ( may 19 th) a few pictures to the photo page so check those out ***********

Jake update ....

May 20 ,2003


Things have settled down a bit here ... FINALLY. Although I'm not holding my breath, it seems as if the GVHD ( Graft vs. Host Disease ) is stable.

Jake went to the oncologist last Friday and the results of that visit were virtually the same as the visit 3 weeks before. All his blood work came out GREAT ! The pokes are getting a little easier for him ... they can now usually get the blood work out of 1-2 sticks ,instead of 5!! For those of you that understand and "like" numbers... His HGB was 13.5,white blood cells 8.01(segs..60,lymphs..37,monos...3 <------down nicely !!!!) , glucose 90, all the liver enzymes were good and no easos <----- indicators of flaring GVHD . What more could we ask for ?...TA DA!!! -------- > His donor study came back with 100% donor cells !!!!! All VERY good news. His weight is still stable at 44lbs. He seems less "puffy" ( HE IS STILL on steriods...sigh ) . He is staying active ,so I think maybe he is turning the "steriod puff" into muscle now. Next appt. to the oncologist,....next month!!!!!!

He got glasses last month ... VERY CUTE !! He does fairly well keeping them on. The patching exercises are another story.... he doesn't like that !! He has only a small "window"( because of the cataract being SO large on the right side) to look out of during the patching . It is somewhat stressful for him and I don't like doing it but we must, in order to preserve and strengthen any muscle left in that eye.We go back next week to see how he's doing with everything in the eye dept. and to discuss future surgery to remove the cataracts, as well.

That's about all in the medical dept. On the lighter side...Jake and I are on a little break from school. Jake loved his teacher at the college child care. He goes 9-3 , 4 days a week .. so that Moma can attend Nursing classes. He'll have the same teacher for the Summer I session ( 6 weeks) .We both are SO happy about that. Then we will get a 6 week break at the end of summer !!!!

For now, we enjoy being a little less busy. Jake is learning to ride a bike !! He swims almost everyday. Plays in the sandbox. He has started to "write" and draw ALOT too. (which I had been concerned about because he was previously VERY disinterested ). I guess it helps ALOT of things when you can "see" to do them !

Jake's sister /donor turned 13 since my last update... Boy , is 13 a handful ! Two teenagers in this one house is HARD..VERY HARD. The oldest is BEGINNING to settle down a bit ( I hope !!) .Although he is far from being an angel ,he is indeed more considerate and thoughtful than the 13 yr. at this point. Maybe the time off from school is long overdue for them ... only 1 1/2 more weeks to go !!!

A hearty thanks to all that continue to keep us in thoughts and prayer. Thank you

for all the well wishes, cards, and stickers etc. They are a blessing. We are trying to make an updated address return list, enabling us to send thank you notes, updates or photos. If we missed you and you have sent something before ... Please accept our appreciation and thanks. You could only imagine how the cards and stickers fill our hearts !! We are blessed and pray that you will be too!!

Forever Grateful,

Danette (mom) & Jake

Sunday, May 11, 2003 11:55 PM CDT

********* ADDED PHOTOS.... MAY 19th !!
Hi all

Happy Mother's Day!!
I got to see my MOM today. Both my mom and dad got in last night , just in time to see Richie leave for Prom !!!Boy, am I ever glad that's over!!! He and his girlfriend both looked GORGEOUS!!!!! He had a great time even though, the car he was to "borrow " fell through just hours before Prom ....ughh.. I got right to work finding a rental online and though it was hectic , it was worth it in the end. I'll get pictures up very soon .
Jake has been EXTREMELY TALKATIVE lately... driving us crazy !!! His issues with GVH (skin and mouth and eyes) are relatively stable ... not good ...BUT not painful at least.
I finished my first semester of "pre-nursing with 4.0"! yeah!! Jake and I get 3 weeks off then I hit the books again. I will hopefully use this time to do some "catch up" work around the house, as well as, spend some leisure time at the park , zoo , library ... just good cheap fun!! Hopefully the weather will cooperate ..in Texas we only have one kind , you know,.......H --O --T !!! We will most certainly not risk heat stroke to see a few animals !!
Jake goes to the BMT clinic on Friday , the 16th. and the eyedoctor again on the 28 th.. until then not much I can think to write , right now. Going to bed NOW!!!
Blessings to all.. Please remember all the kids in prayer especially ... COLBY..LIBBIE..CONOR ...JAY..and SHANNA

Danette ( Blessed to be a MOM )

Wednesday, April 30, 2003 11:19 PM CDT

Hi all,
I wanted to provide a quick update ....

*********************************************************
JACOB'S DONOR STATUS IS 100 ... excellent news !
*********************************************************** I'm too tired to proof read this and make changes so please forgive mis-spellings etc......
< His mouth is still yucky , now they have added a mouth paste and cyclosporin eye drops 2x a day to our regime. This is an attempt to keep at bay the need to increase steroid by using topical treatment in addition to the 5 mgs. prednisone each day.. we'll see how that works....
< His eyes are back and forth,sometimes ok sometimes goopy and red. He wears the glasses about 90-95f the time with no problem!! However, when he went to school on Monday the children laughed at him ,from the moment we walked in :( . It hurt his feelings pretty bad and he tried to throw the glasses on the floor, calling them "stinky glasses". I stayed an extra 30-45 minutes to try to ease him in and play mediator. We even went to the next classroom where another 4 yr.old he knows got glasses ,same time as Jake!! He had wanted to stay in there because the 4 yr. olds weren't laughing . Ms. Nancy ,his WONDERFUL teacher, was OUT that day with a sick child of her own, so he was in no hurry to get back to the not so nice 3 yr. olds. He went back to his class, kind of relectantly . I called after my first class was over, they said he got over it all and had already settled in for his afternoon nap.
> Sunday afternoon my alternator went out on my van --- Yuck !! expensive nearly 200 dollars!!! The bolts got stuck,Jerry was working, parts stores had to order it and couldn't until Monday...blah blah blah. I drove Jerry's truck to school . He borrowed his parent's van. After I checked on Jake , I went to look for someone to test the alternator ( that's before we were sure it was the cause of the dash lights going off and on , windows that wouldn't roll down , a/c didn't work etc. etc.)Well, I got to the truck and NO keys . I backtracked NO Keys. I called campus police thinking I locked them inside.He couldn't "slim jim" it. I ended up crawling through that tiny little door on the back ,only to discover...No Keys. I got in the little golf cart thing with the police guy, he took me around to backtrack again. I picked through a trash can that I always drop my napkins,Jake's disposable syringes (after meds...no needles), coke cans etc. Still No keys. then a classmate saw me in the golf thing and knew something was up and said " Hey, did you lose your keys?" .. yes...I just saw them in the bathroom in the science building... I already looked there,thanks...NO keys.. I finally found them on the building secretary's office desk. I spent the next two hours going to 4-5 auto parts to have the alternator checked.so that I wouldn't spend the 200 dollars merely to find out it was something else wrong.. seems as if no one had the adapter to check it and they just sent me to somewhere else . ...UGH!!!.... JUST NOT MY DAY.....But,Thankfully that seems to be was all that was wrong . (Thank God it was not the on board computer stuff!!)
< Jake stood up for Colby tonite at church.I asked him to in the car after school he said "sure".. Our assoc. pastor and friend prayed that Colby be healed. I prayed that his mom and dad would be comforted and have strength to endure this hurdle. They are on marathon hurdle jumping lately :(
Colby is a strong boy, but He really has it tough right now ... Please pray for him !!!
Shanna ,that I spoke of last time, is home doing MUCH MUCH better.
Jay and Conor , still hospitalized for transplant , facing their own ups and downs but currently OK , (I think)... Keep them in prayer too.
Ok so....It's NOT been a real short update ... it's been a crazy week!!
Take care and Be blessed,
Danette

SATURDAY , April 26 , 2003 11:18 A.M

Saturday update:
We spent ALL day yesterday getting glasses for Jake ( another state insurance problem issue, that I'll spare you ). Jake needed his glasses ASAP as per the doctor because he will be re-revaluated in about 5 weeks, waiting 1-2 weeks to get the glasses sort of was defeating the purpose. I spent the entire day driving from city to city looking for someone that took the insurance & that cut their own lens, so that we could go home with the glasses or have them in a day or two. short version: there is no such company! Actually the Wal-mart vision center did but didn't have the "covered" lens in stock-- how convenient . I paid money I didn't have for the glasses and the insurance contributed only 33 dollars towards the ENTIRE purchase because "they don't cover poly carbonate lens "which are 80 dollars a set!and the only ones they had in stick that fit Jake's prescription . All in all, Jake got the glasses last night and wears them All the time if he is not sleeping and he looks precious (non-biased opinion, of course)! He doesn't seem to mind at all. We told him he looks like a little professor and he loves Dexter's Laboratory and the professor so that helped, I think. He got lots of unnecessary toys yesterday because we were going from store to store and he was better occupied while I spoke with various clerks , made phone calls regarding the insurance coverage and options etc. He "broke the bank" yesterday ,to say the least! I'm glad it's over , at one point he bumped into the counter and busted his lip, it bled and bled and is now sore ( mostly because he already has an irritated mouth from the GVHD). I think he never saw the counter(it happened before we picked up the glasses) ! All's well that ends well , I suppose. I got to get to doing "catch up " work here so until next time.........
Love ,
Danette



FRIDAY , April 26, 2003 :


Second attempt to write update.. I apologize , in advance for my rumbling, Humour me please ...

Very long day here , which,I suppose accounts
for much of the tears I have shed today. The news that we got today was anything BUT surprising ... Like the last 4 years have been predictable -- HA !
Jake was scheduled for Bone Marrow transplant clinic (BMT) and to see the eye specialist for follow up . He goes about evry 1-3 months there , just for check ups since the corneal ulcer last May. He had failed a vision screening last week and since this appt. was already scheduled we decided to wait and approach that issue along with his regular stuff there.
The good news is that in BMT his blood work came back wonderful .. I mean ,I thought last month that they couldn't get any better BUt it did . HGb.13.2, platelets 400, WBC 9.53 , ANC 5930, segs 56lymphs 39nd monos 5( monos back down to normal afetr many months of being on the high side). The BUN (Kidney # )has been up a little too and it has improved alot. The glucose was 89 ( even after the cereal , banana and sprite this morning) down almost 40 points since last time ! 1 blown vein and only 2 sticks ( total !!!). They did the FISH test ( donor testing , to make sure Samantha's cells are keeping up the good work ). Those results will be back probably early next week. The immmunology studies show that ,on ALL 3 types , Jake is making enough antibodies , eithin normal range!! No more IVIG (at least for now)!! The skin issue is worse than last month for sure, but the doctor would like him to stay on the 5 mgs and see him back in 3 weeks to recheck. he weighed almost exactly the same as last month 43.9 lbs or just under 20 kgs. So it was onto the eye clinic after a quick lunch.
We got there an hour early , which I thought was best since they had no prior knowledge of Jake failing his vision screening at school . We had scheduled this visit in January ,just for a recheck ,routine stuff for kids with prior eye problems. Routine ended up being 4 hours!!!
They agreed that Jake's vision had gotten much worse since they last saw him. Long story short. Jake has a prescription for eyeglasses. L was 20/20 in January and Right was 20/30 . now , 20/40 Left, 20/80 right. He has cataracts in both eyes , most likely due to prolonged steroid usage. I call this "the catch 22 effect". can't seem to win this thing. Needs steroids , but steroids cause lots of " issues" . without steroid suppressions, the GVH could cause a whole host of "issues" necessatiating the need for more frequent doctor's visits and possible irreversiable side effects. For now , we look for galsses TOMORROW , the sooner the better :( . Patch 4 hrs a day , lubricate eyes each night , dilate before patching and glasses while awake. We go back near the end of May , to check to see when and if he will need surgery to remove them! It feels very weird having a 4 yr. old that has thinning and grey hair and cataracts! Sad really .. Iknow that if it were me I'd have give up already.But not Jake, somehow he "rolls with the punches", all with such humor and zeal ...He is AMAZING!!! It's real late so I'll close for now BUT PLEASE DON'T FORGET....
*** SHANNA , 8-9 MONTHS OLD , in hospital now on a ventilator since yesterday.
**** COLBY , who needs those donor cells to seek and destroy any "bad cells" left in his body.
***** CONOR, RILEY, AND JAY (ALL 3 HAVE JUST HAD TRANSPLANT , PROBABLY THE HARDEST MILE IN THIS JOURNEY)!!

THANKS FOR CHECKING ON US... TAKE CARE AND BE BLESSED,
DANETTE & JAKE

Thursday, April 17, 2003 11:36 PM CDT

Hi all,
I decided to update since Jake is "wired 220", as we say here in Texas and there is no hope of me going to sleep anytime soon.
I have held off taking Jake back to the doctor about the skin and mouth issues. I am not sure if they are getting any better. It's NOT awful but it's NOT GOOD either. HE has been on increased steroid for 8 days now, though I am not sure that's long enough to tell whether or not that is the right plan and will work to relieve the breakdown.
He has a visit to the Bone marrow Clinic on the 24th . They will do the FISH study/test from the perphial (sp?) blood and we should be able to have results in
a few days afterward. I would feel lots more comfortable changing his treatment(if that's necessary) after we know
those results. They had also said they would do the IMMUNOLOGY study or IGg levels then too .By those results, they will decide if taking him off the monthly IVIG is a smart idea. Personally, I hope they don't , at least for a few more months. He seems to "run down" and tire more easily when it is time for an infusion and then pick back up again after the infusion. It may be just coincidence but I like the idea of staying proactive "just in case" .
He had the dental visit on Tuesday. Don't even get me started..ughh. We have private AND state insurance .The state coverage pays in full for preventative procedures (like he has many NORMAL kid visits!!) I brought them the wrong card state card (we had the one from last month by mistake) and they refused to see us. Well thst didn't sit well with me ,since I had ALREADY given the MASSIVE pre-treatment antibotic dose (required for immune-suppressed patients) ,drove 25 miles to the only pediatric dentist that takes both insurances only to have them tell me that they can only use 1 of the insurances (which is stupid, how come everybody else takes both? ). I choose the state one, because they are a out -of network for our other insurance and would require up front payment for what exceeds the customary charges etc. So , I got somewhat defensive and told them to use the other one (private) or call and verify the state one, but that I didn't have the 30 dollars that they charged over and above what the private company pays. lots more happened, but suffice to say I was ticked because I had just given the antibotic (1000 mgs.) and I had not intended to give him medicine for NO reason. I went to the car ,searched high and low and finally found a copy of the state insurance and he got seen after all! No cavities !! note to self: he will be 5 in October, (age at which our private dentist starts seeing patients)wait until then and see the same dentist as the rest of the family( very helpful crew there) . Never go back to that pedi. clinic again.
He failed the eye screening at school this week. 20/50 (one eye) and 20/70 (other eye) vision and a referral (by state law here) to see an eye specialist which he already had an appointment for anyway. He stills sees an opthamalogist every 1-3 months to keep tabs on the ulcerated place in the eye that he was hospitalized for last year. So this time (next Thursday-24 th) , we will get have lots more to talk about.... the need for glasses (or will the patches help?) and the fact that Jake MAY be RED/GREEN colorblinded. I want to see if there is a way to tell that for sure....that would be interesting since he still has trouble naming some colors (mostly red/green interchange).
He sang Wed. night at church , he did pretty good except when he left the stage he looked at me and whispered "uh oh mom I forgot to bow" so he scrambled back to the stage and took a bow , everyone laughed ,because it was so cute.Well he "took it wrong" and he said tell them don't laugh at me and he kept making reference to the fact that "they laughed, they laughed". I tried hard to explain that they laughed because he was so cute but I'm not sure it got through. so much for stardom !!
I have to go to bed now it's been a long ,long week here. I hope you all have a very blessed EASTER. Enjoy family and friends ( imagine your life without aANY one of them) ,it is almost sure to make you appreciate each othera whole lot more.
Pray for all the families battling illnesses,relapses, bad news etc.
Especially **** COLBY ( WORK DLI'S WORK !!! )
Conor F. (TRANSPLANT ON MONDAY)
2 yr .old Jordan ( Just diagnosed W/JMML)
8 yr.old Jordan (having tests done next week to see the status issues of JMML , he is having a few problems. they will see if the JMML is " acting up "again.
JARED waiting for the new marrow to grow.

ALSO, a dear family that we know lost their 4 yr.old little girl yesterday to complications (she had a heart and liver defect and needed transplant for correction ). I think she had a heart attack.
God bless you all,
Danette

Sunday, April 13, 2003 10:06 PM CDT

Hi all,
As always ..thanks for checking on us. It helps us a great deal just to know someone cares and is concerned about us.
I put a call in, Thursday, to the transplant clinic ,Cheryl (our NP)was out that day ,but
I said it wasn't urgent ,she could return the call when she got back. She called Friday 9am and we discussed the need to increase the steroid to help relieve the skin and mouth breakdown. It got worse ,though he never complained of pain.
I saw Tuesday night that he had "peeling" lips and somewhat more "itchy" skin. Wed. morning I raised the steroid back to 5mgs/day. This too is a really low dose,but we HAD hoped that he wouldn't need them AT ALL pretty soon. (he was on 3 mgs/day for the past month or so).
We did get to go to the fair.We saw lots of animals .We ate cotton candy and Jake rode lots of rides with cousins,Lauren and Faith. Lauren is by far his favorite cousin which stands to reason since they are literally just days apart. We stayed up really late and we barely "made it" through Wed, our busiest day. We decided to sleep in on Thursday to catch up some. Friday was a park day, very nice day for it ,too.
The doctor said it was still O.K. to get the dental cleaning and check up done this coming Tuesday, so long as we take the antibotics before and after the visit... Big doses of amoxicillin ,can we handle the bubble gum stuff ?..piece of cake.. this would be Jake's choice if he had to pick a med. to take (that or FK506 or diflucan.. he actually likes the taste of those..weird huh? ).
Ok in other news... far be it for me to get excited, but Richie is going to prom in a few weeks ! I guess anyway ....He
asked me" where do you go to be fitted for a tux?" So, it's either that or he's getting married....NOT !!!
Jake is going to sing in church Wed. night... I'm a proud moma!! I don't think he can do anything that wouldn't impress our fellow church people. He is sort of everyone's baby there. So point in me even getting nervous about it..
Ok that's it EXCEPT *** REMEMBER OUR FRIENDS***
COLBY...fighting relapse
CONNOR S...... overcoming a line infection
JAY .. In probably the most critical time, directly post-transplant
CONOR F. ...... Beginning transplant procedures TODAY
Riley ... continued recovery ,just after transplant
LIBBIE... For peace and direction for her doctors and parents.. Love you Becky !!

AND .....OUR TROOPS AND THEIR FAMILIES !

BE BLESSED,
DANETTE

Saturday, April 5, 2003 10:08 AM CST

Hi all,
Thanks for checking on us . Not alot to report from a medical standpoint. No appts. this week.
I have been a little concerned about Jake's skin and mouth though ( GVHD )--- Both look a bit "IFY" . On Monday he had a blood blister- like sore in his mouth and a whitish paste on the inside of his lips,tongue and cheeks . For those of you that don't know this is what GVHD looks like ,at least for Jake. The skin looks a little worse on and off, too. It tends to itch him a little too.
He hasn't complained about mouth pain ,which he usually does, when it gives him problems. He becomes a picky eater and says his mouth burns,particulaly things like applesauce and pickles (acidity too much for the skin breakdown in the mouth EVEN if you can't see it ). So far so good on that. I am sitting a little tight here, just waiting , sometimes it is just a matter of letting his body do a little extra work to overcome it.Of course, I'm hoping that's the case but if not we'll wind up in Houston for consult on that.
We are scheduled for dental evaluation and cleaning on the 15th. Also, eye evaluation on the 24th. PERPHIPHAL DONOR STATUS AS WELL AS IMMUNE RESPONSE STATUS oon the 24th too. This will determine whether he gets IVIG at the end of the month.
Otherwise, Jake is energetic and playful and did I say TALKATIVE !! We have about 4 weeks left of this semester and then 3weeks off before tackling 6 weeks of Anatomy and Physiology I and Sociology.
Richie's truck running again (yeah). He took the ACCUPLACER test -the college placement exam. He did great !! I am so proud of him. He takes Psychology this Summer .
The COUNTY fair is in town and I am hoping to take Sam and Jake to it . It is a really big thing here AND JAKE HAS A FABULOUS time evry time we have been able to go.Richie went last night with friends and I am sure he will go again and again, as I think he bought a weekly pass braclet. Jerry is working this weekend to earn a little overtime -- helps alot since he rarely gets any. The kids and I are on our way to a Jesus rally at church this afternoon .We have the Klu Klux Klan in our small town this week ,as well as the Black Panthers. Our town is BARELY 10,000 . Our church decided that( instead of supporting or counteracting these groups) what we need to do is lift up the only "power" worth rallying about!! - Jesus !! Thanks for checking on us ,please pray for Colby (in hosp with CMV ,EXTREMELY dangerous for BMT patients). Also, Jared and Riley ( in transplant) and Conor F. (headed there soon) and CONNOR S. ( fighting line -infection, which can also prove to be very dangerous and hard to treat) AND LASTLY NOT LEASTLY OUR TROOPS AND THEIR FAMILIES ( they need our support and prayers ).
Thanks so much all,
Danette

Friday, March 28, 2003 7:44 PM CST

Hi everyone,

Thanks for checking in on us...
The week progressed quickly with the normal BUSY -ness!
I had 2 tests and finished up the Med. Term class with a "B?" ,no wait an "A" ( long story - don't have time to get into all that) All that matters now is the final grade is an A !
Jake had IVIG today . The visit was ... let's say, bittersweet. He has been healthy ,(unlike most of us ). His blood counts are great ,I mean GRRRREAT!!! His weight is stable (not coming off but not increasing either) so I guess that's good. Hey Dana, 42.9 lbs here and ONLY 38 inches!! Although he hasn't dropped too much "steroid weight", he got a little taller lately and that helps him look slimmer.
middle of post --forgot to go pick up Richie (truck fixed ? you ask,-- NO!) I'll finish in a bit....
BACK NOW ------ Sat. 1:10 pm
that was more of a bit delay than I had imagined but as I said ...about the BUSY ness around here.(Jake was playing a computer game when I got back ).
OK , blood counts
wbc 8.32 , ANC 4330 !! 51% Segs,38%lymphs, 8% monos (still higher than we would like, but down from last month so not bad considering that), Easos and Bands 1% each. HBg 13.2 %..... ALL OF HIS ELECTROLITE PANEL and CHEMICAL PANEL WERE NORMAL AND BETTER THAN BEFORE EXCEPT GLUCOSE @ 129 ( a little high but may be because of the Sprite I was pushing , hoping he wouldn't need multiple sticks if he was well -hydrated)And the ALT-- was 28 (that's lower than any of the last 5 visits and only very slightly higher than normal--we'll take it!! ).
Ok, I said bittersweet and you are wondering what's the bad part huh? Well,
it is hard to explain but here goes.... We got vitals and picked up the tubes needed to take over to the "Expert sticker" at the cancer center.I told the nurse there was no need for the vial for Fk 506 level and I said I would explain to Cheryl, our NP,when we got back.
What happened is that I had been weaning Jake from the fk506 since December's news of the horrible "boy cell" that scared me half to death . --( they might as well have told me he was relapsing). I would have no part of that word and felt extremely trapped in making a decision regarding the Fk506 ( an anti-rejection med that CAN reduce the effectiveness of the donor marrow). In my eyes , in light of the "boy cell" the donor marrow needn't be weaker but stronger ,in order to fight the bad cells that may have been trying to rear their ugly head. I had called TCH then (early January) and voiced my concern about the "do nothing, let's see approach ". They graciously agreed to a bone marrow aspiration to check for abnormalities. Results were 100% female --no bad cells noted !! (Thank you, Lord ) By that time, I had already reduced the fk by half , he wasn't showing any additional problems without the full dose and I wanted him off completely (A.S.A.P.),just in case. I spent the next 6 -8 weeks reducing the fk by half every 2-3 weeks until he was off completely.
I had a very hard time telling Cheryl and ultimately "chickened out " last month but I had no intention of playing this out indefinately. I can't explain all this and I know that some of you see this as horrible.I think I would too, coming from someone else . I never would cause harm to Jake or keep from him anything that was in my power to give him.
So this time I told Cheryl . She wasn't happy. I explained the best I could. I even all but swore I would GLADLY put him back on it TODAY if they could tell me with any degree certainity that it wasn't going to cause him more harm than good. She said she would have to leave that up to the doctor.
I am not sad that I did it .It wasn't a trivial decision. I have NEVER done anything like this before.We always follow the rules precisely and completely.But I feared the medicine would give the JMML an edge ,ONE THAT WE COULDN'T HAVE LIVED WITH.
To see her face , I'm sure she felt betrayed ... You have to understand that Cheryl seems more like a friend than our NP. She is both professional AND caring, a trait matched by few. I could go on and on trying to rationalize this ,but suffice to say when we left I felt as if I had deserted a beloved pet, that I had raised since birth... almost empty, not knowing if our relationship will ever be repaired. Only time will tell, I suppose. All of them at TCH have done so much for Jake. She basically asked if we would rather another doctor or hospital-- I want neither -- TCH is like our second home. all the staff rejoice in our triumphs with us , and are sad for us while we face all the hurdles . Enough said, I think.
School is good for both me and Jake , Samantha is struggling with her grades. Richie has to take the placement test for college before he can register for the SUMMER I semester there. His truck has been a real PAIN . I hope it gets fixed REAL SOON!!! .
I spend the majority of my time coorindating the dropping off and picking up of kids at practice, work , school ,looking for truck parts that seem to not exist etc.etc. etc.
Richie helps in that department ,at least a little , WHEN his truck runs.
I pick up Jake's pictures today , our scanner only seems to work part time though so... I'll try to get them up soon ...until next time.**********************Remember Colby ( not good news ), RILEY and JAY (in hosp. for transplant), Conor ( on his way there very soon ) , and LIBBIE , who I haven't heard from in WAY too long. AND of course, OUR TROOPS and their families.
Be blessed,
Danette

Saturday, March 22, 2003 10:26 PM CST

Hi all,
Not a whole lot to update here... since we haven't been to a single doctor in NEARLY 2 WHOLE WEEKS!!! OK so it's not that impressive to you guys. BUT IT IS more the exception, than the rule around here !! I guess I may actually run out of excuses NOT to clean the house pretty soon. - LOL.
We went camping for a couple of days last weekend. Jake went up with Daddy on Friday night.While ,Samantha and I drove up Saturday morning . We stayed behind so that she could do cheerleader try outs. She had fun, but she DID NOT make the cut. She took that news rather well. I am sad to say that she hasn't had the advantages that some girls have had . Considering that we have been dealing with leukemia-related issues for the past 4 years AND therefore have had neither the time OR money for gymnastics and the like. Then, she probably would have had a better chance.She worked SO hard ,to learn the routines and improved so much . I AM really proud of her attitude towards the whole thing though. She usually would have been throwing a fit for days. She's growing up I guess:) . Speaking of growing up...
Richie's truck broke AGAIN for the 3rd -4th time since Christmas--ughh. He can't seem to get a break with the transmission issues. Hopefully, it will be back running soon and stay that way for a good long time! He starts the dual-credit classes at the college in June. I am not so sure he is enjoying being almost grown -up right about now. Jake on the other hand...
Jake has been enjoying school again and playing with his cousins this week that went camping too. He is down to 3 mgs of steroid per day and still hasn't had any REAL concerning issues. He is completely off the FK 506 for about 3 weeks now !! I started weaning him in DEC/JAN ,when news of that "Boy cell" worried us so much. He sees the hemotologist on Friday for IVIG and may very well be off steroids and the like in another month or two. For now , we are taking it really slow ,hoping to avoid any potential problems.
I finished Medical Terminology today --1 DOWN . I made a 85 on the final exam. I am a little disappointed about that but it is my fault. I did nearly nothing during spring break when I should have re-read some of the material that I had studied in the beginning of the semester. Oh well , I will have my overall grade by Monday. I am hovering between an A and B .Of course , you know which one I'd prefer!!
That's about it folks... Remember to keep all our friends in prayer. (links up top ) It matters, IT REALLY DOES.
ALSO, I want to send a VERY SPECIAL THANK YOU TO ALL THE MEN AND WOMEN IN THE MILITARY ,WHO PUT THEIR LIVES AND FAMILIES ON HOLD, WHILE PROTECTING US AND OUR FREEDOM. ****** NOTE TO PROTEST PRONE INDIVIDUALS: YOU DON'T HAVE TO AGREE WITH WAR TO BE THANKFUL TO OUR TROOPS !!!
BE BLESSED,
DANETTE

****HAPPY BIRTHDAY LUKE !! ( and PAM )! MAY YOU BOTH HAVE MANY, MANY MORE.

Thursday, March 13, 2003 9:57 AM CST

Good morning all,
Jacob and I are throughly enjoying our "Spring break " from school. I must say I thought surely we would have accomplished more....but mostly we have just enjoyed sleeping more than usual, doing things that we like to do and of course catching up on the never ending LAUNDRY!! Jake did have an ENT visit on Tuesday. His tubes have been questionable for some time now, the peditrician said "just hangin' in". So I thought I should take him in to see if something special needs to be done. The specialist that placed the tubes said "one is a little tilted , and eventually they will come out (they all do), but his ears are perfect!!" That was a quick visit and no pokes!! She also said because I have had a little concern over Jake's recent speech ( not being as clear as usual ) that that day would be a very good day (BECAUSE HIS EARS WERE SO HEALTHY, NO FLUID ETC.)to rescreen and do a hearing exam ( he has failed his last 2!). They fit us in and we didn't even have to wait but about 20 minutes or so. Jake passed the exam and the screener said he sees no need to repeat it EVER unless there is an additional concern by myself or one of the doctors!! I told him how I had noticed that Jake's speech was a little less understandable in recent weeks . He asked Jake to repeat lots of words , Jake did pretty well and the screener said that he understood him really well. But ,if I was still concerned I should look into a language,learning and speech dept. referral, just to be sure. I haven't decided about that yet but we'll see..
Jake doesn't return to ANY doctor until March 28 th for his hemotology appt.( blood work, exam and the monthly IVIG). I better go for now , I spent most of the morning already watching the report about Elizabeth Smart,WOW am I ever happy for that family. Just goes to show you to NEVER GIVE UP!!
Oh yeah, I am having Jacob's picture taken today. So keep checking back, near the end of the month.He's a tad bit slimmer than last time (Oct.) Thanks for checking on us.
Be blessed ,( We are!)
Danette

P.S. Don't forget to check on and say a prayer for my friends (links at top of page ) . PRAYERS WORK!!...just ask Colby's family!!! ( Love ya Laura !! ) And Becky if you are reading this, I miss you .. hope you are OK.. call me !!

Friday, February 28, 2003 8:52 PM CST

Hi all,
Well since the last time I updated, Jake celebrated 4 yrs. post diagnosis !! A far cry from the 9 months they estimated he would live!( the Am. cancer society, not our docs.)
Everyone seems to be feeling a bit better. Jake escaped the strep throat that his sister had . But, last night my older son started complaining. For Richie to go a whole year without strep throat would be against all he knows as normal so.. we started him on penicillin ,( throat looks very gross ) even though he has no fever which is atypical for him.
A little boy in Jake's class had strep ,too.
Hopefully ,because Jake still takes penicillin twice a day,he will be ok with these additional exposures,too.
We went to the BMT clinic today. The nurse called me yesterday to inform me that they had seen Jake's name down for IVIG and they had planned ahead .. We go to BMT clinic to get weight ( down a bit to 19.5k or 42.9 lbs!!!!) and vitals then they would order the IVIG while we take the
blood vials over to the cancer center ( where Cheryl#2 ,"the expert" works!!) Seems as if Jacob is not the only one that gets anxious about all the pokes (hehehe)!! I actually think they flip a coin ,to see which one of them doesn't have to poke him !!
Cheryl #2 did a great job ( only 2 pokes). Jake pulled back on the first one --ughhh. We went back to the BMT clinic to get examined and receive the IVIG . Everything was just great !!
THIS TIME COUNTS >>>>> 2 WEEKS AGO
HGB - 14.2 HIGH ? >>>> 14.0
PLT. 420 GOOD >>>> 417
WBC 7.31 GOOD >>>> 5.92
ANC 2070 GOOD >>>> 2630
MONOS 10% (HI,BUT STEADY)>>>>>10%
'SEGS 36% OK >>>>> 34%
LYMPHS 53% (OK AND STEADY) >>>>53%
EASOS 1% >>>>>>> 2%
MY ONLY CONCERNS ARE THE ALT= 36 (NORMAL IS 10-25) AND IT IS UP FROM 30.
AND BUN IS 17 UP FROM 10 (THIS IS STILL NORMAL BUT THAT'S A BIG JUMP )
****OK HERE'S THE REALLY GOOD NEWS .. WE RETURN IN 4 WEEKS!!! (NOT 2 ).... YEPPIE!! WE HAVE ENT RESCHEDULED FOR MARCH 12TH THOUGH. THE FUN WON'T LAST LONG, WE HAVE EYE AND DENTAL APPTS. IN APRIL ---BUT WE ARE GETTING THERE.
OK ,SCHOOL FOR ME IS ESSENTIALLY THE SAME. I'M DOING REALLY WELL (GRADE -WISE) BUT WITH VERY LITTLE SLEEP.. BUT SPRING BREAK IS COMING UP !!! AND MEDICAL TERMINOLOGY WILL BE OVER IN A COUPLE MORE WEEKS TOO .( SO I'M STUDYING HARD TO FINISH WELL IN THERE).
IN OTHER NEWS,WE ARE WORKING ON A REDUCED INTEREST MORTGAGE , WHICH HAS ONLY ADDED TEMPORARILY TO MY STRESS. THE HARD PART IS OVER , THE APPRAISAL WAS YESTERDAY . NOW ,WE JUST WAIT AND SEE IF WE ALL CAN GET ON THE SAME PAGE TO CLOSE WITHIN 10 DAYS.
LASTLY, IF ANYONE IS STILL AWAKE .. PLEASE ,PLEASE PRAY FOR COLBY(LINK ABOVE IN RED) HE NEEDS A MIRACLE . THERE ARE OTHERS TOO .TAKE A MINUTE TO JUST CONSIDER
HOW LUCKY SOME OF US ARE AND THEN PRAY THAT GOD WILL INTERVENE ON THEIR BEHALF.
LOVE TO YOU ALL, THANKS FOR CHECKING ON US AND SIGN OUR GUESTBOOK SO WE'LL KNOW WHOSE STILL READING THIS THING.
BE BLESSED,
DANETTE

Sunday, February 16, 2003 0:06 AM CST

Hi all,
Glad to know someone still checks this thing...

Well, we had to cancel the ENT visit that was scheduled for the 12th -- Samantha got Strep throat--ughh. My nephew had it on Wed. last week , I went to the doctor on Friday because I felt kind of icky and had sore throat. I didn't have Strep but my throat really hurt! I had just given blood 2 days before so I wanted to be sure to find out for sure so that I could pass on any info that might have caused a problem for the receiptant (sp?). Monday, Samantha felt bad , I tried to get an appt. but there were none to be had-- until Tuesday afternoon --- by then she felt fine but we went on to the doctor anyway. Glad we did ,even the doctor was surprised at the results !! She said she was sure it was allergies/post nasal drip -- NOT !! So we kept her home on Wed. --24 hours for the amoxicillian to do it's thing (Like she didn't already expose someone for the day and 1/2 she was at school - ughh ).
Also last week, Jake got a mild case of pink eye but no Strep !!! yeah !! I am so impressed by his ability to fight this stuff.. AND BOY, HAS IT BEEN A LONG TIME COMING....
He went to the doctor ( HEM/ ONC --ONLY 3 POKES THIS TIME !!!) Friday to check to see that those counts came back up since last time.. They did pretty much.
THIS TIME ---- TWO WEEKS AGO
HGB 14.0 NEVER this high) 12.7
WBC 5.92 (a little improved ) 5.0
Platlets -417,000 ---- 350,000
monos 10%(still high,better) 14%
segs 34% + 1 bands ---- 23%
lymph 53% --- 61%
easos 2% ----- 1%
ANC 2070 (nice improvement) 1106

all in all his counts look great !! but I was a little concerned with high calcium level again and low phosporous.
high Alt ( just a little ). I e-mailed his PNP , they are not concerned . His HCT was high too , and His MCV. I probably have been reading too much medical stuff--- but there are some similarities in this trend and another complication . Am I reading too much into his counts ? or Am I justly concerned ( even if only a little ) I know the doctors want me to relax but I seem to always be on the look out for stuff , that may not even exist..Is this flaky or what? those of you that have been here too, let me know.. ok, On to another subject ... school..
Going very nicely. I took the mid term (accelerated paced class) for MEDICAL TERMINOLOGY did good --- 93!! YEAH !! --glad that is over . Biology 96 , 97 on the last two exams!!
2 psych classes only one grade-(101). But I have 2 tests coming up this week though. SO that is going well.. lots of long nights -- studying . My family is not quite adjusted, I think they just liked mom to do everything... but I am determined that we each have to make adjustments...
I had better go off to bed now and "adjust to " a few hours of sleep.( now that's the hardest to get used to -- I personally would prefer 9 hours of sleep every day -- Who ever gets that much sleep ? )
Please remember COLBY, CONNOR. LIBBIE, CONOR , SHANNA ( note: she is having surgery on her heart Monday, she was recently diagnosed with JMML -- I do not have a link to her page ,as of yet ) and lots of other people facing very troublesome times ahead.


GOODNIGHT and GOD BLESS ALL,
DANETTE

Monday, February 3, 2003 7:32 PM CST

*****I finally 2/8 added some different photos,loads slowly though,I'm not much good at this part--SORRY!*******

I GUESS I WILL TRY AGAIN... I JUST POSTED BUT LOST IT SOMEHOW...
SINCE MY LAST POST ON WED.( I THINK ) .. THURSDAY MORNING JAKE REFUSED TO WAKE UP. I FIGURED THE NOVELITY HAD WORE OFF HIS NEW SCHOOL EXPERIENCE AND/ OR HE HAD NOT GOTTEN ACCUSTOMED TO OUR NEW SCHEDULE. I TRIED SEVERAL TIMES, EVEN GIVING HIM A BATH WHILE HE WAS HALF ASLEEP. HE WAS JUST TOO TIRED . SO I LET HIM GO BACK TO SLEEP AND I DITCHED SCHOOL THAT DAY. LUCKILY, I HAVE ONLY 1 CLASS ON T/TH.
HE WAS DUE FOR IVIG ON FRIDAY AND HE DOES TEND TO "RUN DOWN" MORE EASILY, NEAR THE END OF HIS CYCLE.
FRIDAY WENT FOR IVIG , GOT POKED 5 TIMES AGAIN. THEY CALLED DOWN THE PICU CHARGE NURSE.WE HAD HER NEARLY 4 YRS. AGO WHEN JAKE HAD HIS FIRST TRANSPLANT AND HAD TO BE INTUBATED DUE TO VENO-OCCUSLIVE ISSUES. NEEDLESS TO SAY , SHE DIDN'T REMEMBER , BUT THAT'S OK. SHE WAS VERY NICE TO HIM AND GOT THE POKE AND EVEN GOT ALL THE BLOOD WORK REQUIRED THIS TRIP!! BLOOD WORK RESULTS , QUITE UNUSUAL FOR JAKE AT LEAST.
WBC 5.02
ANC. 1115 ( BOTH THESE LOW )
SEGS 23%,61% LYMPHS,EOS 1%, AND MONOS 14%
HGB 12.7
PLTS. 350,000
ALL CHEM 7 PANEL AND ELECTROLITES GOOD.

THE NURSE PRACT. SAID HE PROBABLY WAS EXPOSED TO SOMETHING AND "USED " ALL THE WHITE CELLS TO FIGHT IT OFF. SOUNDS GOOD TO ME... EXACTLY WHAT HIS BODY IS SUPPOSED TO DO.
PROBABLY ACCOUNTS FOR THE SLEEPINESS TOO, BUT WE DO NEED TO TRY TO GET HIM TO BED EARLIER.. I HADN'T EVER STOPPED TO COUNT HIS HOURS OF SLEEP UNTIL OUR VISIT ON FRIDAY-- UGGHHHH. HE ISN'T GETTING ENOUGH ..SO WE ARE SHOOTING FOR A 9PM BEDTIME!!. WISH US LUCK..
TODAY IT WAS BACK TO SCHOOL. PSYCH TEST FOR ME - IT WAS THE FIRST GRADE IN THAT CLASS.. WOULDN'T YOU KNOW IT ?.I LEFT MY BOOK ON THE TABLE AT HOME.. I HAD PLANNED TO STUDY THE HOUR AND HALF LUNCH BREAK TODAY BEFORE CLASS BECAUSE LAST NIGHT , I WENT TO BED WITH JAKE AT 11 -TO HELP FACILITATE THE NEW SLEEP PLAN.( I SAID WE WOULD TRY). ANYWAY,IT'S A GOOD THING I PAY ATTENTION IN CLASS! I THINK I DID OK ON THE TEST . GUESS I'LL FIND OUT ON WED. BIOLOGY TEST EVERY WED. TOO. MID TERM FOR MED TERM (HAHAHAA!!) ON THE 15TH. WOW, DID I TAKE ON A LOAD OR WHAT? WELL, I HAVE TO DO THIS FOR THE FUTURE GOOD OF THIS FAMILY.
WELL THAT'S ABOUT IT FOR NOW. HE GOES BACK TO DOC. ON THE 14TH. TO CHECK TO SEE IF HIS BLOOD RECOVERED NICELY FROM ? <---- WHATEVER IT WAS. HOPING FOR ONLY 1 POKE!!
THANKS FOR CHECKING ON US... I AM CHECKING THE VARIOUS SITES EVERYDAY..JUST NOT MUCH TIME TO SIGN IN LATELY. PLEASE KEEP COLBY,CONNOR S.,CONOR F. ,LIBBIE ( I MISS YOU, BECKY--HOPE ALL IS OK ) AND SO MANY OTHERS ...(LINKS AT TOP OF PAGE)... IN YOUR THOUGHTS AND PRAYERS.
LOVE TO ALL,
DANETTE