Just going right along..60 days.

Doin OK today. AND yes, 60 days total so far in the hospital..Just praying this GVH will go away. She is in good spirits, keeping up/positive. No food this weekend, trying to lessen the 'output'. Rest the GI (Gastro Intestinal) tract, which is where the 'boogeyman' GVH is setting up camp.

WE take refuge under the wings of the Almighty.

Hope and pray all is well with you.

Much Love...Celebrate Life!

Bill, Becky &Abbey

Good Thanksgiving...

Had a great Thanksgiving at the hospital.. Just good to be together. Talk and talk.
Abbey and I had a nice dinner of the traditional turkey, dressing, green-bean casserole, provided by the hospital cafeteria. Becky looked so good with her blonde wig wonderfully placed on that beautiful head, and so nice to see her 'regular' clothes. She felt so good, so normal, other than that R2D2 medical tower in tow. She said she was so happy we could be together. Amen and Amen. Later in the day, after we left, she did have to have two units of red blood. Her red count was low. BUT TODAY her platelets increased on their own! No help from donor platelets, and her white count was very desirable and stable. She felt pretty good, but still feeling the effects to the GVH disease in her intestine. Please keep praying these new meds will take overtake the 'boogeyman'..

Hope you all had a super Thanksgiving..We all gathered together to ask the Lord's blessings..

Big Love you..and you know it, Celebrate Life!

Bill, Becky & Abbey

One to remember..Giving thanks..

Becky's Hickman catheter began to ooze fluid..and THIS is a first according to staff here at City Of Hope. The removal of the chest catheter was an eyeopener. Internally, the line had an actual tear,fissure,..The specialist who removes these said: "if this would have ruptured any more, you would have been on the operating table!" Becky knew something was wrong and told them, she was in tears from the pain of the discomfort for days, and as mentioned, she found out some fluid was leaking from it. Her lead physician was astounded at this malfunction, 'one of a kind', he said. Smart, brilliant Becky asked that the line be saved, (she has this uncanny ability to see/feel when the situation may not be patient friendly) He told her, he would complain to the manufacturer, and this Dr. really will! Yes, indeed a day to remember among many. She is now resting well. Mentally at great ease. The arm line is a bit more bothersome, but hey, she wants to dwell on the positive outcome. We thank God for this miracle. It is a miracle it was discovered before total severance. Her white count is still very good..and again, the procedure to insert the new line was uneventful, smooth, the "new" donor cells/blood helped greatly with this.
We truly give thanks in ALL things! We will have a wonderful prayer of Thanksgiving, the three of us..

Celebrate life, BIG Love to you all..

Bill, Becky & Abbey

The word is: Enduring / 56 days...

Yes, 56 days and counting..Enduring is the word of the day.. no other way to say it. Becky had to have her chest Hickman catheter changed to the arm 'pikline'..the chest catheter had some insertion and internal complications. There was a twist in the line at the insertion area and slightly under the skin which, need I say, can cause the fluids to redirect themselves, or cause unwanted infection, but she is doing just fine with the pikline, though it is more cumbersome, requires more effort to move in and out of the way. Good news is: 3 meds were disposed of! Now, let's pray the two 'newbie meds' will do their thang to the GVH disease..which does seem to be feeling a jab or two from the rookie medicines. Becky has noticed a welcomed change. Her abodomen area is feeling a margin of comfort...and this she likes, really likes, yet some unwelcomed fluid to the ankles and feet has appeared. But, we are positive this can be remedied within the next few days.
So, even though Thanksgiving will be spent in the main lobby of the hospital with hubby Bill, and daughter Abbey, the three of us, will be talkin' lotsa turkey and putting a hold on the pumpkin pie and ham til Christmas..and it's really OK..still grateful for the progress made. No, we didn't think Becky would have a 56 day and counting hospital inpatient stay. BUT we are still going to rejoice in the victories seen thus far. I am sure those pilgrims who, what's that word, ENDURED so much hardship in 1621 did the same. They thanked GOD for the smallest of blessings and we do the same. He is faithful..He knows our needs...

May you all have a wonderful Thanksgiving.. Good health and bountiful goodness to you and yours..

Celebrate Life..

Love,

Bill, Becky & Abbey

WE just don't know...

Again, we are still so thankful for the healing/cure of the Myelofibrosis, the primary reason Becky had to have the stem cell transplant..Now, we just want to banish the Graft vs. Host disease. It appears Becky will not be home for Thanksgiving, not that we were counting on it, but we sure were hoping and praying for this to happen. She felt good today, but was disheartened to hear Dr. say: "this is going to take some time." She said she is grateful the disease is only in her intestinal area, which causes discomfort, but there is some consolation in knowing it is not in the liver or other areas, which can happen. Abbey just asked me write that everyone pray for a miracle..that Becky would somehow be home by Thanksgiving..I told her, of course, I would certainly broadcast this. Abbey is aware this may not happen, but the eyes and soul of a child are filled with overwhelming optimism, a wanting of the best, it is such an infectious purity that causes adults to reach a little deeper themselves. It's simple..think good thoughts, pray good things..

Pray we all remain optimistic, no matter when Becky may come home. This WILL PASS. In time, these uncertain days will be a distant memory.

Much love to you all.. Celebrate Life.. Breathe in..Breathe out..
May the Lord make HIS face to shine upon you and give you peace..

Bill, Becky & Abbey

Let's pray the "other" gone...

OK, now that we are still and always will rejoice over the healing/cure of the myelofibrosis disease..Please pray for the Lord to destroy this GVH..her GI tract to stop feeling this 'boom boom pow' feeling. That's where the disease, Graft vs. Host, is making it's home..to put it mildly, there is more output than input. This just ain't what we want.

The Dr. on top of his game, he sees the entire playing field. We know he wants to get Becky on the road home and soon! We are now 51 days at City Of Hope. And Becky just said, 'this ain't no Love Shack either'..But as mentioned, the staff has been extremely dedicated, caring, and performing 'beyond the norm'..Becky just wants to get OUT OF HERE, go home, go home, NO more 'phone home' want to get on that LA freeway and feel wind glide on that magnificently formed bald head, and I must say, it is a pretty dome.



Thank you all again for your support and prayers. Enjoy your food shopping for Thanksgiving.

and need we say, enjoy being at the table with loved ones..



Celebrate life..Much, mucho love,



Bill, Becky & Abbey

A word now in our vocab..HEALING!!!!! excitement!

It came upon a morning clear...glorious news from her physician here..

The main boogieman, the culprit, the reason we are 'checked in' to this hospital-hotel, the JAK 2 gene has now been destroyed. Yes, this gene was causing the marrow to 'scar', turn soft, and not produce platelets..Since December 2007 we have lived with this life altering disease, Myelofibrosis. BUT today, Becky received the miraculous news, that the JAK 2 gene is not longer in her bone marrow. She is 100% donor! Free 'to move about her life'..I mean we knew this was the purpose of the treatment, to rid the body of this boogieman, but honestly had not been at the forefront of our conversation the past few weeks. Just getting thru this myriad or maze of medicine, information, do-this, don't do that was her existence. And suddenly a 6 page report says it all, I quote: "NO EVIDENCE of JAK2 point mutation detected by PCR analysis" and we add: Praise GOD! Even her lead physician was a bit surprised at the brevity of healing. We will frame this report!
Now to temper this just a bit, we are still being treated for the Graft vs. Host disease. This great news does not give us a carte blanche clean 'check out of this place' health ticket, because complications can be seen, as now evident with this GVH 'hiccup'...But if we understand correctly, this is very manageable and can be corralled with the current medical regimen.
Thank you all SOOOO much for your prayers..They have penetrated this room. Needless to say, Becky is dancing internally and even trying to dance with her rolling 'med-tower' her R2D2..It's wonderful..STILL no timetable for discharge..but we dwell on this for now, and the sweet goodness of our Lord..

More to come! Enjoy your day or night..

Celebrate, sing, dance..

Love,

Bill, Becky & Abbey

THE medicine needed..a daughter

After 5 weeks....finally, Becky was able to hug her daughter..she and Abbey embraced for what seemed to be 5 long minutes..no words said..just a silent hug, puncuated with tears, especially from Becky. This is a medicine that cannot be described..NO value can be assessed..it penetrates the heart and soul immediately..thus a split second effect to the patient.
WE all chatted for a little over an hour or so, before Becky had to go back to her room and get connected to her rolling 'medical tower'..Abbey and I went out for a bite to eat, then it was back for more time with Mom..more chatting. catching up, then a 'good bye see you next time hug' to put the exclamation point on the day. Becky said she now felt so content, so calm..She would sleep so good tonight, and Abbey was so thankful to see Mommy. She liked her bald head and loved the wig Becky chose. "Nice hair Mom, really looks good on you!"..It was a surreal, yet so real moment.
We held hands in prayer, and thanked God we could have this time. Thankful a physician saw the stable 'numbers' Becky has been supporting, and thus gave the approval for this family gathering. He knew she needed it and he was correct. He knew the inestimable value of a Mother/patient holding her daughter.

Onward forward. Praise God from whom all blessings flow..

Talk again soon..Celebrate embrace life..

Bill, Becky & Abbey

Steady as she goes..day 34 after transplant

Becky felt good today..she said it, and you could see it..Her numbers were stable..the whites increased a bit! yeah..we like that. She chose a wig today! Wow, what a moment. She liked the look of it, and had no problem during the process, was emotionally just fine. Really kinda boosted her confidence.. Nice medium blonde look...
She asked that everyone would pray for this latest medicinal regimen to drive out this Graft vs. Host disease. To let the new stem cells enjoy their new found home..

Thanks so much..enjoy your day or evening..

Big love to you all..celebrate life..

Bill & Becky

Staying positive..AND!...

Yes, staying positive..still so amazed at the donor letter..again, medicine to Becky..This latest round of increased medicine seems to be throwing a few good jabs at the complications. The Dr. is slightly decreasing the steroid med, and that's good! Becky felt good this afternoon..her voice clearer and stronger than in days past. Her 'numbers' are stable..the platelets remain low, but as said before, that's to be expected. AND! AND! Becky gets to see Abbey this Saturday in the main lobby! A "Physician approved" visit..How about this for encouragment! Now this is a "shot"needed, a big pill that will be easy to swallow! and will be delightfully felt for quite some time.. Couldn't have come at a better time! Hallelujah!

Hope all is well with you that follow along..thank you again SO much for your love-vibes and prayers..

Much love back to you...Celebrate life.. :0+=

Bill & Becky

40 days & nights..a word from donor..

Yesterday, Nov 8th marked 40 days and nights..Did we expect 40 days and nights, and more? Yes, yet always hopeful for a few days less. Becky's numbers are stable..But again, the GVH, Graft vs. Host disease is making itself known..Steriods were increased along with the intro of a new med or two.  ALL liquid diet.. a clear liquid diet..chicken broth etc. There is NO timetable for discharge...other than her weekend physician said, 'hopefully home by Thanksgiving"..Becky was somewhat downtrodden at another two weeks or more in hospital, but at least she knows this 'hiccup' can be treated...
Now here's some medicine she really needed! TWO things:
First) She got a few wonderful encouraging sentences from the DONOR. A total surprise. No pre-call from the hospital to say it was coming..Just a simple typed letter mailed to us saying, and are you ready for this? We are numb and amazed.  "Dear Patient, I am your donor, me and my small family, (husband and 8 year old daughter) are praying that God would care for you during this transplant. I want to share a bible verse with you, to encourage you:"..

Joshua 1:9 "Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go"
_________________

At this time for privacy reasons, no name was given.. Of course, this was indeed the 'medicine' Becky needed. Did human effort orchestrate this? Did someone match this donor with Becky for the sake of allowing 'sisters' to share this faith bond? Of course not, we are humbled and ever so grateful that God orchestrated this. I speak only for myself, but I do ask Him to help me in my sometimes weak trust and assurance in His guidance. Yet, even when I am weak, HE is strong, and man, was this strong. Dwell on this... 

We hope to meet her and her family in a year or so.

Second, 'medicine' Becky needed was seeing Abbey, albeit from 6 stories high looking down to her. But at least she saw her..They talked and talked while looking at each other. Abbey could see Mommy's pure bald head and her medicine tower. It was a very, very good moment...
You could see the delight in Becky's eyes...We will do this more.  

So, some very encouraging 'shots' for Becky...So, so good for her..

May you all have some encouraging 'medicine' today..or tonight.
Much Love, Celebrate life..

Bill & Becky

Day 38 City Of Hope..

Yesterday's scope was a success..it did provide the evidence that the GVH (Graft vs. Host disease) was indeed making itself known. Fortunately, only showing in the intestinal area at this time..It is treatable with an increased dose of the predisone (steroid!$**&^^!) and the introduction of another drug..No, the drug regimen ain't pretty, but most of them are doing and will do what they are supposed to do.. The steroid causes Becky's hands to literally 'soft-shake' I call it, not overly pronounced, but something as simple as signing her name is difficult, even her voice changes to a low pitched gravel. ..but hey, she said, I'll do whatever it takes to get of here! This WILL pass! It really will! **Her white count rose today to 2100! We like that!
So, onward forward. We still 'click our heels' and pray for her to soon be home...Thank you Jesus for being the ultimate physician.

There's a good ol' country song by Kenny Chesney called, "Don't Blink"..man how true, the gist of the song is how life life sure passes by, don't blink. I can honestly say, Becky and I are trying to cherish/embrace memorable moments even in this time of uncertainty and trial...

Celebrate life..much, much love..

Bill & Becky

Onward forward...

Well, we thank/ praise God, Becky woke up with her plates at 43K! Which was awesome, therefore the internal scope/biopsy procedure was permitted..and she did just fine. Her whites did drop again to 1.1 (1100)..Yes, discouraging, but Becky said; 'she felt good today' ..almost happy-like..We will know for sure tomorrow..Thurs. if the Graft Vs. Host is on the radar, and if so, how to treat it. The Dr. thinks there is a trace of it, but this is common. Becky was funny, she called it "the Graft cr***p, disease." (ok, I'll say it, the 'Graft crap' disease) I guess you had to be there, it was a humorous moment. Oh, and Becky called later to say she played some solitaire...This is really good, she hasn't had the focus to do this in a few weeks or more. Yes!

WE just want those white cells numbers to ascend...this is the key to her road home. The medical lesson for today is: Simply put, the white cells fight infection, the red blood carries the oxygen, and the platelets perform the big job of clotting. The human body, though subject to breakdowns, abnormalities and in need of major tune ups from time to time, is absolutely amazing. We are indeed an awesome creation. May we never forget it.
Just to note *..Abbey had a Mtn. Dew and a donut for breakfast, and for dinner, mashed potatoes, oreos and a triple shot mocha.. She functions just fine after this nutritious intake...OK, I'll stop..She's doing great...eating well and doing good in school..

Good health and blessings to you..As Thanksgiving rapidly approaches..there is no need to say it, but I will...Give thanks in ALL things!

Celebrate life! Dance..

Bill & Becky

Day 25 "old"..each hour changes..

As always, information will be corrected/clarified..so regarding the vaccination comments from yesterday..here goes:

CLARIFICATION** You CAN VISIT IF you have had the swine flu or 'normal' flu vaccination, BUT NO visit if you have had the NASAL vaccination..stay tuned if this changes! You will of course wear the mask and gloves. And hopefully she will be awake upon your visit.
And again, NO children under 18. But feel free to tell a cute childhood story..

OK..so today saw the numbers drop again. 1.4 (1400) for the whites, the platelets 19K..
She was given platelets to boost the count for the scope procedure she WAS to have, but they actually went down to 15k, so the procedure was cancelled. Just too risky with low platelets to go internal...She will receive more tomorrow, Wednesday, hopefully they will rise, thus allowing the scope procedure possible. Becky may just wake up and see them higher. This we pray for..
She felt pretty good today though. She was matter-of-factly about the procedure cancellation. She knew it would be best to have the plates at a higher level. I think she gets the 'good attitude' award today. Yes, So thankful she was having a 'semi-feel good' day. And yes, this all seems like a surreal rollercoaster ride at times..Up, down, stop, hey let's ride again..and so on..
But she is staying on this 'ride' until there is smooth tracking..

As always, celebrate life...Smile, tell that mirror, it's gonna be a good day..

Much love,

Bill & Becky

Total 34 days at COH..the numbers..

Yes, 34 days at City Of Hope..right now it's the 'room of hope' for Becky. A hope and prayer to get some strong signals toward leaving this City Of Hope for the "City Of Home"..

Her numbers fell, white cells are now 2100, platelets approx. 20K. She will need platelets for the internal scope tomorrow. As mentioned in yesterday's blog, this procedure will identify if the Graft vs. Host disease is indeed rearing it's head, and if so, which path of treatment will be necessary to ward it off. Becky feeling generally OK today, considering this up and down phase she has entered. She loves her new satin pillow case..it feels good on her head...the hair stubs rub/glide smooth on the surface, in her world, that's a welcomed comfort.

An important note** re: VISITING : Yes, visiting is allowed, but you will wear mask and gloves. CLARIFICATION** You CAN VISIT IF you have had the swine flu or 'normal flu vaccination, BUT NO visit if you had the NASAL vaccination..stay tuned if this changes! Her attention span is limited, but visits can do her good. If she is awake. But we all know the hospital is quite a drive for most.. So no problem if visiting is done after she has been home for some time.

There is much to be thankful for..no matter what..
We are so thankful to the families who have and are now overseeing Abbey after school and into the dinner hour. She is getting some good nourishment...But I pour cereal really good in the morning, and Dr. Pepper is just as good as orange juice in the AM...yeah, OK..more humor sorta..

Celebrate Life! We are grateful to the God of this universe who gives us this life..and the promise what is beyond it..


Much Love,

Bill & Becky

Staying positive..

Day 23 after transplant..numbers are: 2700 white count, platelets 30K..not too bad. Nice to see platelets holding. The white did lower from yesterday. Becky had some nausea...Going to see to do a GI scope tomorrow..which means a look into her abdomen, see if all is well. They look to see if the Graft Vs. Host disease is appearing, and it's acutally OK if there is a sparse version of it..Means the body is fighting, working toward infection fighting defenses. We definitely like tge sound of this. Becky was sorta down today.. No other way to put it. Just ready to literally taste the air outside the hospital. She talked to Abbey an hour ago and that always gives her a psychological boost. They haven't seen each other since Oct 10th. The phone is nice, but we all know what a hug can do..

We press on..We thank God for the air we breathe..

Celebrate life... Love to ya..

Bill & Becky