27th October - tuesday

I'm so sorry guys - it's been a hectic few days since we got the word that Jen could be discharged.
Yesterday, they let her out of the hospital.
She got home late in the afternoon after meeting with the "team" and the transition nurse and the pharmacist.
Meg and I wanted to prepare the house for her arrival making it as germ-free as possible.

so, without much notice, the entire process was set in place and there was a lot for everyone to do. Now, she will have the chance to recoup at home.
she will have to go to the clinic frequently at first and then her visits will taper off as she progresses.
she's mostly tired but her counts are progressing wonderfully and her bilirubin is going down slowly.
thanks for your patience.
we'll talk to you soon. Hopefully, Jen will drop you a line.

Day +16
The results are in - her endoscope and colonoscopy shows she has GVHD in both the upper and slower GI system. Since the 'team' already started the protocol for GVHD, she's ahead of the game and will stay on her steroids at the current strength for the next couple of days. Then, if signs are good, they will start weaning steroids very slowly.

It is my pleasure, honor and privilege to let you know that Jen has TURNED THE CORNER!!! Her bilirubin fell 11 points, the transplant cells are right on track, multiplying as we speak!
With this disease and procedure, 24 hrs makes all the difference in the world. I'm sure you are wondering how things can turn around and be so positive in just a short time. Many times patients take a turn for the worse and it looks doubtful they will make it. The next week, they are discharged. This week, we watched Jen go to the bottom and now they are talking about her getting out of the hospital. It's a mystery to me but who cares how and why it happens like this, only that it happens. Jen will have to prove herself worthy of discharge - tonight they shut off her pain pump. She must begin eating food (she's been IV fed for several days). She must be able to get around on her own, including using the bathroom. Jen has her goals back - getting out of here on Monday. Yes, that's right, by Monday.

We know that most patients get re-admitted at some time because of fever, infection, etc. after discharge (actually I think all patients do) but Jen doesn't care if she's only home for a couple of days to regroup, she'll settle for that. Of course, her goal is to never set foot in UW again. All the IVs she's still on will become pills she'll take at home. Now it's our turn to take care of her. Scary thought but they'll teach us what we need to know.

We are so thankful to God and all his angels at the hospital and on this blog for getting us through this experience. We know we have a way to go but if you let us lean on you a little longer, we'll do fine. We'll keep blogging with daily updates - hopefully Jen will take over as blogger. It would be great for you to hear her point of view on all this.

Thank you friends, family, doctors, nurses for being there for us. Thank you Jen for fighting the good fight!

jo/mom/granny

day +15

i posted during the night for day +14 but can't seem to find it. Of course, I don't remember what I said. Well, it's now Wednesday AM and Jen is sleeping, receiving a bag of platelets. Today, they are going to do an endoscopy to look at what's going on. It should be able to confirm whether her problems are from GVHD or not. They will take a biopsy if need be. We'll have the results tomorrow, we're told.

It's not an easy time for Jen. All her counts are really going in the right direction. Even this AM, her bilirubin was down 8 points - great news! But, Jen is finding it harder to fight since she never gets a break from the pain, restlessness and anxiety she's going through. How many times can you tell her tomorrow will be better when it never seems to be: one more time, every day! All the side effects she's having are really hard to cope with. She's hardly out of bed, can't get comfortable and is receiving a multitude of drugs, antibiotics, supplements, glucose, anti this and that and pain meds - she can't sleep for more than 1 hr at a time. But she goes on, even though sometimes she doesn't want to.

Will let you know when we know.

Keep the prayers coming.

jo/mom/granny

Day +13
Things are still questionable whether it's GVHD but her bilirubin count stayed the same, not going up or down, a good sign. It's 24 hrs since steroids began. Her blood sugar has risen and she had to receive insulin (common with steroid use), lungs and kidneys are still clear and she's being watched very carefully. Jen, except for bathroom breaks, hasn't been out of bed. She complains of trouble walking and pain throughout her body. She was retaining fluids quite a bit but that seems to be under control now. Her jaundice looks a little better but really is still in full swing. Her rash is gone. She's getting a lot of pain meds which help but do not relieve all the pain. Still a waiting game. But, her wbc's and neutrophils are still forming so that is terrific news. Sorry there's not more to report but at this point, we are all taking one day at a time and hoping tomorrow will be better for her and her test results.

jo/mom/granny

Day +12 - ok - when Jen's bilirubin began to go up (now at 29) the doctors thought it was too early for her to get graft vs host disease. So, when the liver problems increased, they diagnosed the VOD. Now, since new symptoms are occurring which are not associated with VOD but are associated with GVHD (graft vs host disease), they are considering the latter as her diagnosis. So, GVHD is expected to occur, VOD sometimes occurs; GVHD is treatable with steroids (which they have started); VOD apparently is not treatable. So, we are told we should be rooting for GVHD instead of VOD - are you following all this - we know this is not easy for them, there are so many complications and each patient is different; we know it's a balancing act and caution must be taken not to disturb the engraftment. All we know is we want the right treatment for the right diagnosis and we want Jen to feel much better than she does right now. So, we're turning our attention to the treatment and results of this new protocol they've issued and we'll try to keep you up-to-date. This is a wonderful institution with wonderful doctors and staff. I am glad we are here for her treatment. We just want this to turn out RIGHT.

I'll be nicer tomorrow.

jo/mom/granny

day + 11

day 11

Well, we got more good news - neutrophils have shown up! But, of course, it seems lately, we get nothing for nothing as another complication has arisen. Jen has veno-occlusive disease of her liver - a fancy name for her capillaries and blood vessels not working well and not doing their job in her liver. The result is a very severe case of jaundice. Now, we are told that the liver is very resilient and can withstand this type of problem but the problem arises if it spills over to other organs which are not as resilient - like the kidneys or lungs. So far, so good but the next couple of days will be crucial. They don't want to be too aggressive with her treatment as they want the stem cells to continue doing their job so they are doubling one of her medications, giving her something to get rid of the fluid her body is retaining and wait and see. Right now, her lungs are clear and her kidneys are functioning normally. They will monitor these carefully. This has been the hardest time for Jen so far; expected by all reports but nonetheless no easier for her or us. So, we are not out of the woods yet but almost there so keep the prayers and good wishes coming and we hope to have really good news for you the next time we post.

jo/mom/granny

Day +10

Dave came up the stairs this morning and said....She has white blood cells!
Post more later! That's our girl!

Day +9

Not much to report in regard to the medical aspect of Jens progress. Thank goodness because my mom is better at relaying that information. Jen is still running a fever and now has developed a rash all over her body. It's uncomfortable and causes her to feel a burning sensation. This is said to be expected but still sucks so bad for Jen to have to deal with. She pretty much just hurts all over. She did reach a milestone in that today was the last day she would receive Methotrexate--which is a chemotherapy drug to fight off gvhd (graft vs host disease). We have anxiously been waiting for day ten. Days ten to fourteen are those magical days that will answer our prayers. These are the earliest days where we could see engraftment. We're told it will more likely take around day fourteen. The biggest event of the day was going to the hospital to shave jens hair. Up until yesterday she has maintained a full head of hair. She noticed last night it was really starting to fall out when she would run her hands through it. Today unlike the last time I cut her hair was not very emotional. It almost seem to be a task we had to check off the list of things we had to do in order to get through this and move forward. Chemo..check...transplant...check...shave head...check. The bravery I see in my sisters eyes is like nothing else I have ever seen. A little more than a month ago we cried like babies at the thought of her losing her hair and today it was just another part of the process. Another step towards recovering. She kept asking... does it look patchy? No, Jen it doesn't look patchy. Do I look like Britney Spears? No, Jen you don't look like Britney Spears? Do I look like a baby? No, Jen you don't look like a baby. What you do look like is the damn cutest thing I have ever seen. She has the most perfect little round head and big brown eyes. Then I asked can I take your picture? No, she said. Maybe tomorrow she will let me! I speak for all of us when I say how much we love reading your comments. Everyone of you are a source of strength, so thank you! Ron A. please know how much hope and support we feel from your posts, it means so much to our entire family!
xo Meg

Day +7 - A little better than yesterday but still with fever. Received 2 transfusions of rbc's and 1 of platelets, plus a variety of other medications - the fullest her mobile unit has been thus far. Jen was able to walk the hallways a few times but spent the rest of the day in bed, dozing off and on. Hardly eating at all and may soon receive IV supplementation if her appetite doesn't improve. Just trying to get through this week. Chloe Jennifer visited her today and she held her namesake for a short while - the best medicine she got all day! No results from yesterday's tests; hopefully good news tomorrow.

jo/mom/granny

Day +6: Today was a hard one for Jen. She's in the middle of this limbo with her counts being nothing and she's on many meds with many side effects. It's hard for her to keep anything down. Today, she ran her first fever. She's been lucky that her vital signs have remained normal for this long. But, today, one changed. She told me this AM that she felt like she was getting a fever and she was right. They respond very quickly when you have a fever - blood cultures, chest x-ray, urinalysis, etc. They have to find out the cause and find it quickly. Though she's been on an antibiotic since the transplant, a stronger one was started. Her IV fluids were increased, her morphine pump was sped up, she was put back on a host vs graft IV medication which had been stopped shortly after the transplant. We won't know much until the results come in. They say everyone runs fevers during this crucial time and 90% of the time, all test results come back negative - it's just par for the course. We're hoping she's in that percentage. We'll let you know how she is tomorrow.

jo/mom/granny

Day +4 - counts still going down and lots of challenges. There is a low dose chemotherapy that they give patients post transplant which help with graft vs host disease. Fortunately, the drug does help but has a miserable side effect called "mucositis". Well, Jen started taking the drug approx 2 days ago and the muco started right on schedule. Though they told us it would affect mainly her throat, she seems to have more trouble in her upper stomach/esophagus region. So, last night, when all else failed, they gave her a morphine pump. Not only does this help the pain immediately, but if you know Jen, she feels back in control since she's pushing the button to release the morphine. She's feeling much better now and trying to eat on her own. It will take about 6 more days before counts start back up so this will be a hard week for her. But, she's plugging along and coping as well as can be expected. Tomorrow is another day and next report may have totally different news for you.

PS - She still looks great, holding on to her hair, good color - she fools them all the time!

jo/mom/granny

I know you've been waiting. We're waiting too. Jen's counts, as expected, are hovering at 0. It's a waiting game. A crucial time in this whole process. The stem cells are getting in place. They want to do their job. She was given some red cells and platelets to get things started; part of the protocol. Food is not her friend so she'll get IV nourishment, part of the protocol. She's anxious and weak and waiting. We've received lots of info on what is going on in her body, what to expect and how long to wait - 10 to 14 days before engraftment. They told us to watch her counts. They go down to rock bottom and slowly start to build back up. They might fluctuate for awhile. Don't worry. When we see a trend of 3 days or more of slight increases with no decreases. engraftment is happening.

Ron A thank you so much for writing. Jen needed to hear from you. Actually, we've all been waiting to hear from you. Only you truly know what she is going through. You are her role model and she's trying to be brave like you.

I or someone else will write when we can. Sorry, things are a little busy here. Jen and her family appreciate your encouraging words. We worry about giving inaccurate information to you guys so please forgive the generalizing and being vague.

Thanks for your support.

jo/mom/granny

jo/mom/granny

DAY 0

Most of Tuesday 10/6, a day that will go down in infamy, was spent waiting to hear the whereabouts of those precious stem cells from that precious donor. Finally, about 2:00 PM, we got word that they arrived in the area and we were given 5:00 to 6:00 PM as "transplant time". Around 5:15 PM, the nurse brought in the precious bag containing the precious cells - long explanations followed and at 6:00 PM exactly, Jen was hooked up by that precious nurse to those precious cells. We were told that the transplant would take about 3-3 1/2 hrs with a slow drip but, if after the first 15 min there were no problems, they could increase the drip time. Well, Jen experienced no symptoms, all vital signs normal, no side effects, etc. so the drip was increased and the entire transplant was done by 8:30. I don't think she could have had a better experience. She's proving all the statistics wrong, so far: no mouth sores, limited vomiting, no hair loss. They tell us the next few days will be crucial and the above problems might show up but because she has "dodged the bullet" so well, they might be less severe.

All those prayers and good wishes from you all has so far paid off. We are feeling very confident that this transplant is going to be a success! We will definitely keep you informed when time allows as we try to spend as much time with Jen as possible. Just in case, please keep up the good work and we promise you Jen will also.

jo/mom/granny

Day -2

I believe there is a term chemo brain. I have it and if the is no such term than I have just created it! It is not comfortable in that brain and there are many distiburbances between the brain and these fingers batting away. Painful and stiff! Horribly Frustrating! Everything moves in slow motion and absolutely positivley must involve tears. I cry when my boys fight, when my sisters flight was delayed, when I felt I was going to throw up, when I pee into the little hats that they are collecting ALL my of bodily excrerement! YES ALL OF IT!! i CRY AND CRY YOU HAVE NO IDEA. I cannot stop and have given up trying which is quite a relief....
I also a considering becoming a pharmacyst because I now know various forms of anti-nauseous medications and actually have gone through oxy-codone withdrawl myself since checking in! Enough for now. I can barely keep my eyes open
I love you

Day -3

Everyday I feel a little sicker. Only pieces of my hair falling out here and there -no big clumps or anything. I am terribly neauseous all the time. It is horrible. Smells, tastes, smells & tastes-it's torturture. Everything is alot of work. I am very teary and just looking out the window makes me cry. How I long to be out with all of you. It is so hard. I am just patiently waiting for my sister & her babies to arrive. I hope that will help everyone. It's so hard not to cry. My poor husband-who doesn't know whether to come or go = I feel so bad for him....
I love you all so much-keep praying for me

Day Minus 4

It's 5:00 am and I have just begun another Bulsufan treatment. They gave me an extra shot of Adavan to help with the neausea. Which I really need. I just got off the phone with Meg who I CANNOT WAIT TO SEE!!!!!! Do any of you have any idea how desperate I am to see her? I can't wait!! I feel like it is Christmas! She will be here by Sunday afternoon. Praise God!

minus five and counting

Today is day 3 of chemotherapy for Jen. Day 1 she was admitted, had multiple hospital personnel visitors, etc. and then her first dose of chemotherapy began right around 12:30 PM our time and lasted exactly 1 hour. They have included anti-nauseous medication in the protocol and, though Jen did feel nauseous, the medication kept everything under control and actually she faired beautifully. Her biggest problem seems to be lack of sleep since nurses come to bother her all hours of the day and night.

Day 2 was much like Day 1 though Jen spent the day catching up on all that sleep she missed the night before. She actually fell asleep while talking to the chaplain(who did not take it personally). I must add that both day 1 and day 2 she managed to ride a stationay bike for2 miles so Jen is still being Jen and taking as good care of herself as she's able.

Day 3 (today) the protocol changed to the 2nd chemotherapy treatment which, for some reason, was started at 5:00 AM and lasted much longer than the first 2 days. She is tired but her side effects have really been minimal and I think she is doing great - still looks the same, eating some and playing by the rules.

I'm sure you guys all have a lot of questions which I may or may not be able to answer, but wanted you to know that SO FAR, SO GOOD. We'll keep in touch.

love to you all
jo/mom/granny