Two Week Break from Chemo!

Shaylee had finished her 10 week induction....now she had two weeks without any chemo or any doctors appointments! Wow - that seemed wiered to NOT be going up the hill. This is the update from the email we sent out that week:
Sat, 6 Dec 2003
Good morning to you all, This will be a short note, I just wanted to touch base and let you all know howMiss Shaylee was doing. She had fun this week NOT going in for her chemo. It did seem a little odd to not have to hurry and go. We met daddy for lunch to'celebrate' instead.

All in all Shaylee isn't doing too bad. However she has a nasty little cold and acough that just isn't going away. This is a concern for a couple reasons. One being she is scheduled to have her MRI on Monday, and they don't do them if there is a cold usually. We could sure use your prayers that she clears up by Sunday night. Since this cold has held on this long, I know it will take lots of prayers to haveit gone in time. They only do peds MRI's two days a week, Monday and Thursday and I'm not sure at this point they'd have openings on Thurs. The other concern w/ this cold and cough, we've mentioned before, is it getting into her lungs.

Besides all that, we're hanging on. The other kids also have this cold/cough. I don't think anyone has been sleeping really well lately! James is keeping really busy with his job, apparently chocolate is a hot gift for Christmas. ;-D Thanks for your support and prayers!


I remember that cough that just wouldnt' go away. Poor Shaylee just was whipped, no energy. But she sure enjoyed going to lunch with Daddy instead of chemo! Everyone was coughing and hacking - was a case of wouldnt' do any good to isolate anyone because we all had that junk going on. But things didn't get better....

Sun, 7 Dec 2003
Good evening folks, So sorry to bother you so close together with our last note. However, we tookS haylee - and Drew, Narissa and myself - in to the Urgent Care today for her cough and congestion etc. Last night we'd noticed that her breathing was quick andshallow, as if she wasn't able to get a good breath. Not distressed, her skin wasn'tsucked into her ribs when breathing in, but still.

Long story short, after 4+ hours in Urgent Care, assisted by Grandma Wanda who cameto help w/ the kids (James was usher at Church and we really didn't plan on such along trip!), Drew has what they think is a type of asthma, Narissa has a double ear infection, I have bronchitis and Shaylee has pneumonia. They did a breathingtreatment w/ the nebulizer while we were there and it helped some. She was very brave and did the Xray w/o having to be held! Again, she impresses me with her strength. The doctor in Urgent Care was very kind, and VERY much on top of Shaylee's condition, she called up to OSHU and spoke to the oncall oncologist so they'd be aware of what was going on, then came and found me in pharmacy to tell me that they'd really like to get Shay's blood counts so they could make sure they were OK. So we trooped off to labs after that.

The doctor called before kids and I were even home to tell us that the bloodcounts were very good, that they, and the OHSU docs were pleased, but I was still to call the oncologist in the AM. They would call to cancel the MRI, since she can NOT be sedated when her lungs are compromised. So thats where we stand for now...in a holding pattern. I will update tomorrow or Tuesday, when we know a little more.

Please keep everyone in your prayers if you would. Shaylee is running around just as happy as can be, doesn't seem at all distresed by all this. For that I'm very very thankful! We are blessed with such wonderful friends and family. Merewords can not say THANK YOU enough.

Looking back - you know how hingsight is 20/20? - we really should have taken Shaylee up to OHSU, but I'm sure they would have admitted her and at that point I really don't know how I would have handled that. I think thats part of why we just headed to Urgent Care. Can I tell you how quickly you fast track and jump all the people who are there head of you when you tell the intake staff that your child is currently on chemo? WOW. I can still remember the two nurses that did intake on us - two very kind gentlemen. So here I come in with three kids all of us coughing and hacking. They ask about what brings us in, one starts the intake papers on Shaylee one on Narissa. They go to do Shaylee's heart/lungs and notice her port - just as I'm telling them she's currently just finished her 10 week induction. BANG! everything stops. Both nurses stop, the gal at the desk stop..."She's in chemo?" Yes. "ok, get them back to a room STAT and notify the doctor taht this is a priority case" ALL of us got shuffled right back into a room, no waiting in the waiting room with all the other poor sick people. I almost felt bad about jumping ahead of a couple dozen people, but I was so busy being thankful that they took Shaylee's condition seriously.

Its funny, now I know that we actually KNOW a male nurse who works in that hosiptals ER/urgent care on most weekends...but do you think I can remember if HE was one of the people on that weekend? Nope. I was so focused on getting my kids in. They were so sick, so tired of coughing, I felt like - well, like that elephant I mentioned had sat on me! We got back and the doctor came in and started with Shaylee, she asked all the right questions, asked who her oncologist was, did I mind if she called up and talked to them - find out how they wanted us to proceed etc. I think she'd done EVERYTHING w/ Shaylee before she even took a look at any of the other of us! Said they wanted to do an Xray of her chest at which point I started to panic. Not only because I KNEW it was serious, but because I had three kids with me, Shayee wasn't that old and the last time she'd had an Xray she'd FREAKED. I couldn't call James, he was in church....so I called my mom. This was another indication taht my mother deserves sainthood or something! She immediately came over to the hospital - in fact she was there and ready when I took the kids down for Shaylee's Xray. I had to go to a different room for MY check up, but mom was there and took care of the kids so I could actually focus on telling the doctor what my problem was.

I remember wondering HOW ON FLIPPING EARTH we were going to pay for all the meds when the doctor told me all she wanted us to take. I had already shelled out $40 co-pay...now I had four to six meds! Again, blessed by my mom we headed to the pharmacy where she said she'd cover the perscriptions. As I stood in line, the doctor came to find me asking us to head for labs after that....James called just after the doctor left. So I'm standing in line, my mom has the kids sitting in an area away from everyone and I'm talking to James telling him I have no clue how we're going to afford this, that I'd written a check for $40 which I knew we couldn't cover, that mom had offered to pay for the meds - Drew was being given an inhailer, as was Shaylee plus her antibiotics, Narissa's antibiotics, and my two....... He said to be sure to thank my mom, that we'd figure some way to pay them back. Get off the phone, the gal in front of me gets called up to the counter, and I wait for the next empty spot then head up when it opens. Happened to be next to the woman that was in front of me in line. I'm not paying any attention to her as they're explaining the different things to me, then the pharmacist goes off to fill a perscription and I hear the lady next to me say something about how they need to hurry up or something. I remember thinking she sounded very impatient - and in my twisted humor thinking she should try an ER trip with three kids, one of which is a kid on chemo and KNOW you can't afford to pay for things!

I get done and walk over to where my mom is sitting with the kids, and my mom has this gob-smacked looke on her face and has somethign in her hand...my kids are all looking at her with this "Huh" look. She opens her hand, and there is a $50 dollar bill in it. She then tells me that the lady in front of me in line, had over heard me talking to James about how this hit us out of nowhere and we weren't sure how we were going to pay for thigns, she asked my mom to please give me the money, but to wait till she was gone. By the end of this, I was IN TEARS (as was my mom). This lady who I'd thought was acting impatient, was impatient because she wanted to give my mom money, for us, without us knowing who she was. Talk about humbling.

We got over to the lab, where they rushed her bloodwork. I do remember feeling SO relieved that her counts were ok, that we didn't have to take her up to OHSU. I posted an update on caringbridge on the 9th that recaped things.

Tuesday, December 9, 2003
Week 2 off the 2 off weeks.
Last week went really well. Shaylee was able play all week and to go to school on Friday. The cough was still around and making life miserable. Well, Friday night/Saturday it seemed to get worse, and when I put my head on her chest to listen Saturday it sounded a little raspy. UGH. This put together with the fact that her breathing was quick and shallow sent up red flags all over the place.

Sunday AM we got up, and I had a small elephant on my chest and was coughing more than I had been as well. Knew mine had done its typical thing and gone into bronchitis. So James took off for Church w/ Thane (he, James, was ushering for 1st service) and Drew, Narissa, Shaylee and I headed off to Urgent Care. THANKFULLY we got there just after they opened and we really didn't have to wait too long. The doctor we saw was very nice and really good w/ the kids. Drew she thought had a asthma related cough, so we have an inhailor for him now. Narissa has a double ear infection, and is doing GREAT at taking her antibiotics.

The doctor was concerned about Shaylee, because of her immune system not being 100% with the chemo. She was very good w/ Shay. Listened to her lungs a couple three times, they were "wet/crackly" sounding, so we were pretty sure it was pneumonia. S he did a breathing treatment and sent us for Xrays. Thankfully my mom was available and came and sat with the other kids while I took Shay down for the Xray. Folks, I'm telling you Shaylee is my hero!! She sat sooo still and big and tall for her Xray. She didn't have to have mommy hold her, or anything. She even held her breath like she was supposed to! The tech was VERY impressed.

Long/short, she has pneumonia. So needless to say the MRI didn't happen yesterday. HOPEFULLY next week. We'll see. Shaylee is runnign around like she feels just fine. No fever or anything. So we're keeping an eye on her, and will check in w/ her oncologist at the end of the week. She's due in next week to start her maintanance stage. We'll see how it goes.Thank you all for your continued love and support!


I'm going to go ahead and include this other upadate I'd sent out on Dec 16th so that when I next post it should be week 13, when Shaylee started BACK on chemo....but this is one I sent out after we had been to visit yet more doctors......

Tue, 16 Dec 2003
Update On Shaylee
Dear friends and family,

Thank you so much for your prayers and support during the last week and a half. Thankfully Shaylee is finally on the mend. However, I think we should qualify forsome type of 'frequent visitor' discount at the clinics. HA! Almost 10hrs in seven days. Blah! Poor Shaylee started crying and telling me her ears hurt last Thursday, since we were out, we called the clinic and got her in - sure enough she had a HORRIBLE double ear infection. Bless her heart! So they gave her one of the superduper antibiotic shots, and we went in the next day for a follow up. She'd justfinished the meds for the pneumonia, so they gave us a different perscription forthe ears. She is SO good about taking her meds. Because of the pneumonia the MRI was put on hold till we got the 'all clear' on her lungs.

When we went up to OHSU today, they checked her ears, and the right one is still alittle red but MUCH better than it was. Her lungs sound pretty good, so we are onfor the MRI on Thursday. They had origianlly schedualed us at 7:40 check in, 10:00scan. Mind you she can't eat after midnight so I was NOT looking forward to that! However, they called to see if we'd mind coming in earlier since they had somone cancel. NO PROBLEM! So we'll be there at 6am, w/ a 9:00 scan, much easier onShaylee.

We'll plan on starting the chemo again next Tuesday. Please pray that it goes fairly easy for her, and that she's feeling better in time to enjoy Christmas. The first week is usually pretty hard on her, and she's usually pretty sick. We are really praying that she bounces back and is ready to enjoy the Christmas festivities.

Thank you all for your prayers and support. You are all wonderful and we are so blessed to have you in our lives. Many many thanks!

Happy Holidays and Merry Christmas