Another one in the books...

I can't believe tomorrow is August! The last couple of months have gone by so fast.

We have pretty much been home bound this week. Yesterday we took our vacuum cleaner to the doctors as she wasn't feeling good. Actually she is dead and I am hoping they can bring her back to life - my living room rug misses her! And if you know of our problems with the pool I think we may be on the road to clear water! Finally! Someone other than Hannah could feel good about going in there now.

Looking ahead to next month - August will bring my big sister's birthday. More trips to the hospital I'm sure. And hopefully my parents will have a break with their business and come out to New Hampshire for a visit. I didn't forget about you Aunt Bea! We are looking forward to seeing you and hopefully Uncle Ted too. : )

Summer is almost over! That's fine - I say bring on Fall!

If ya can't stand the heat...

Paul is on a neutropenic diet and he has to have everything cooked in order to eat it. He isn't able to have raw fruit or vegatables, deli meats, takeout, etc. So I have to cook all of our meals. Sometimes I can get away with cereal for breakfast though! : ) Now I like cooking, most of the times, but it is so hot!! And there are always dishes to deal with! Oh well, small potatoes compared to other things.

Alayna is still coughing but no other signs of any illness. Paul just keeps his Purell bottle nearby and lathers up after playing with her.

And I have been working hard in Alayna's Closet. In between orders I have started my Fall/Halloween line and completed a new girls collection too. Here is Alayna in one of my newest designs...

Just a reminder! There are less than 150 shopping days until Christmas!!

Our home is full once again...

We were able to pick up Paul today and bring him home. He looks good except for his arm. They had to remove the PICC line as he was starting to form a clot. His arm is incredibly swollen, the skin is very tight but it doesn't hurt (thankfully). He will have another line put in on August 8th. In the meantime he has to give himself an injection in his belly of a blood thinner twice a day.

Poor guy, if it's not one thing it's another.

Tomorrow, maybe...

If Paul's temperature stays normal for the rest of today - he may be able to come home tomorrow. Yay! He received a couple bags of blood and his normal chemo and is just resting. We haven't gone to see him because Alayna and I haven't been feeling well and we didn't want to carry anything down with us. Other than that not much going on.

Denial...

Alayna and I made the trek down to Boston to see Paul today. I don't know if it is his current room setup or the fact that he is sick - but seeing him was hard. He looked sick. He is in a special precautions room that you have to go through 2 sets of doors to get in. There are windows through both walls so the nurses can still look in there. He says only about half the time does everyone who enters wears a mask like they are supposed to. We didn't stay very long, just enough time to say hi, chat for a bit, give him his change of clothes and leave.

This afternoon he had another visit from the respiratory team. He had to do the nebulizer and try to cough up some sputum. He was also given an injection to boost his white blood cells. And according to the results from his scan yesterday the mass in his lung has not grown - so that is good. And he still has a temperature, it hasn't gone below 100 even with continuous antibiotics.

I am not really sure what is on the schedule for tomorrow. We are hoping he can come home in a couple of days.

Let's shoot the elephant!

My friend Jen and I were talking about what we were going through and I told her how I was feeling with Paul's sickness. While he was home it felt like borrowed time. We knew he would be going back to the hospital we just didn't know when. I told her it seemed like there was a big elephant in the room and we were all trying hard to ignore it. She told me "Let's shoot the elephant!" I love Jen! : )

So far this morning there isn't much news to report. He will be in and out of his room for various tests and xrays. His temperature this morning was 100. Alayna woke up with a cough and I don't want to take her down there quite yet until I know if she is sick or not. So Paul is down there all by himself and I feel awful. The pulling starts again. : (

No such luck...

Paul woke up with a fever this morning so we kept an eye on his temp and he got over 100.5. At that point we took him to the hospital and it was 100.8 there. They have admitted him back into Brigham and Womens and are waiting for some blood cultures to come back. He is receiving antibiotics through his IV. Getting infections is one of the biggest problems he can have as his body has no way of fighting them. We are praying they are able to figure out what is going on and get it taken care of.

I will update with more info as soon as I receive any news.

And then there was two...

Paul now has two rashes, one on each arm. But they say that is good as it must be a reaction to the chemo injections and not an infection. So today's trip down to Boston was relatively quick, one bag of blood and we came home. He was in such a good mood I stopped and got him a yummy summerberry pie from the Black Forest Bakery. I don't even like pies but this one is fantastic! I would recommend it to anyone around the area.

Paul and Alayna took a really long nap this afternoon. And then for dinner I made steak quesadillas. Right now it is raining like mad but the temperature has cooled down nicely. It turned out to be a good day.

I hope that you all had a good weekend as well!

unknown...

This morning we were getting ready to go to the hospital and Paul noticed a LARGE rash/bruise on his upper arm. He thought it might have been from the blood pressure cuff. While at the hospital he told the ,who called a doctor to come check it out. They are concerned enough that Paul may be admitted into the hospital tomorrow. They marked the edges with a sharpie and as of 15 minutes ago it has grown beyond that. They gave him IV antibiotics and a prescription for more. They hope that it is a subcutaneous infection. So tomorrow morning again - we will head off to the hospital.

Wish us luck.

What could it be...

Today Paul had a consultation with a new doctor down in Boston. During one of his previous scans they saw something in his lung. They couldn't say for sure what is was so he had to go and meet with a specialist to try and get more information. Paul had to go over his history of where he has lived and do another test where he had to breathe in some stuff and try to cough phlegm up. Paul said that the doctor was talking about doing a biopsy on it to then know for sure. A couple of things came up - educated guesses - some sort of fungus or tuberculosis. What?! Tuberculosis is not the likely cause but the fact that it was mentioned - very disconcerting to say the least. I really hesitate to post about this because we still don't have much knowledge about it. Essentially they said it is growing - probably because his immunity has been down - and they want to take care of it before the transplant. The best guess for that is now September.

Hopefully we can find out more on Saturday during his next appointment.

Do you take it for granted?

Is it Monday mornings when they come? Or how about Thursday afternoons? If they come at all to your house - consider yourselves lucky! By "they" I mean the sanitation department, you know, the garbage men.

One of the "perks" of living in the country is getting to take your trash to the dump all by yourself. Typically this falls under Paul's jurisdiction. Today I had the pleasure of completing the task and I am not looking forward to the next time. Enough said.

Tomorrow is hospital day and Paul has his PSP all packed in it's case ready to go. He most likely will need blood in addition to everything else, so it will be a long day. I wonder what Alayna and I will do this time?

What's new with you...

There isn't too much happening here. It has been a quiet weekend spent at home. Today we took Alayna out to our blueberry bushes and she helped pick some of the ripe berries. I think she only ate a few - most of them made it into the basket. So tomorrow morning I will make some blueberry syrup to go along with our pancakes. Yesterday we had a few friends over and everyone went swimming. The water was perfect and a nice treat on a hot day.

I have been busy with my other blog for my shop, Alayna's Closet. I have also completed some new infant outfits that I am excited about and will be listing them soon. My friend Anita is helping me with new signage for the shop too. My old graphics were cute but mostly girly. As I have been adding new things for boys I feel my shop banner and packaging should reflect that. I am learning alot but it has been really fun.

Paul has been keeping busy with his xbox 360. I think he is playing Halo or something. He wants to finish that before moving on to his new games for the PSP he got. He keeps wanting to go outside and do some stuff around the house. I hope he will be able to keep sane when he is home for an entire year not being able to do anything.

And our Alayna is learning so much and being a little copycat. She watches intently while I flush out Paul's IV line in his arm. She likes to take the empty syringe (plastic tip so don't freak out) and try to help me. It is super cute.

And I just want to thank Jason, Jenn, Matthew, and Kaylee for the delicious Edible Arrangement they sent us this past week! We love you guys and hope to see you soon!

Isn't it ironic...

i·ron·ic
(-rnk) also i·ron·i·cal (-rn-kl)
adj.
1. Characterized by or constituting irony.
2. Given to the use of irony. See Synonyms at sarcastic.
3. Poignantly contrary to what was expected or intended: madness, an ironic fate for such a clear thinker.

I had to run into Wal Mart today to pick up something. As Alayna and I were approaching the door we saw two teenage boys standing next to a table trying to talk to people who were coming in and out. I wondered what they were trying to sell? When we get near one of them says to me "Would you like to buy a bracelet and show your support for Cancer"!? It took me a second to realize that I am actually dealing with this firsthand. All of those little papers the cashiers try to sell to support this and that - it was always out of my peripheral. Those unfortunate diseases happen to people I don't know. Isn't it ironic.

If you were wondering, I gave them $2 but didn't take a bracelet.

The results on Paul's spinal fluid came back with no signs of cancerous cells! That is good news. He did have to receive 2 units of blood today and his chemo. He also got a fantastic gift today- a PSP thing with a couple of games. He will be able to use it when he is in the hospital and while away the days. He is just like a little kid - all giddy and charging it up already. : )

Why did the turkey cross the road...

It has been a nice reprieve this past week when we didn't have to go to Boston. But our time is up. We will be leaving nice and early at 7am for Paul's 9am appointment. He will be getting his blood levels checked, speak with the doctor, get chemo, and wait for the lab work to come back. Depending on what that says will determine is he is to receive blood or any other fluids. If the day is nice I may take Alayna to the nearby Stone Zoo while we are waiting for him. Then we start up with 2 visits a week to the hospital.

Our neighbor and friend, Heather, gave Paul a lesson in making stained glass today. He had expressed an interest in learning to do that and it turned out that Heather has done it before and has all the supplies. He is trying to come up with some hobbies to do after his transplant and he will be pretty much housebound the whole year after. I told him he should take up laundry or dishes. The "fun" stuff I get to do! :P

The last few days this turkey family comes up through the orchard, eats some berries by the stone wall, then crosses the road. I wonder where they go?

A gloomy morning...

The fog has rolled in thick this morning. So far this summer has been full of rainy days. Which is ok. I guess we would feel like we were missing more if every day was beautiful and sunny.

With this second round of chemo Paul has been pretty sick. His belly has been so nauseous and yesterday is the first time he has thrown up. He still has his humor about him though - he asked why I wasn't in the bathroom with him holding his hair back. He has also been sleeping so much. At night he sleeps about 12 hours and during the day he takes 2 naps about 2-3 hours each. I feel so bad for him although there is really nothing I can do. But I made him cookies yesterday and he enjoyed those.

Oh! And before I forget again I want to wish a Happy Birthday to my cousin Anjenette! And my very good friend Patricia - her son Nathan turned 2 - Happy Belated Birthday! My memory is shot and I am forgetting so much so please forgive me! Did I forget someone else?! I hope not.

Wishing you a safe and happy 4th of July!

Love,

Paul, Amanda, & Alayna

Short tour...

Paul is in remission! At this time they do not find any cancer cells in most of his body. Yesterday they performed a lumbar puncture to test his spinal fluid and inject chemo to reach his spinal column and brain. The other chemotherapy does not reach these areas. I didn't get to be in the room with him but Paul said Dr. Wadleigh had to stick him 4 times before it went through! She was trying to explain the procedure to me as it being similar to an epidural. I told her I didn't have an epidural because I didn't want a needle in my back! : p But he survived and was sent to the transfusion room for fluids and more chemo. There he was taught to give himself an injection in his leg. The needle is very small and he says it doesn't hurt. He is being so brave! Now we get a semi break and don't have to go back down for a while week. The search for a bone marrow match continues...

I thought I would post a short driving tour of Boston.

The really cool looking Zakim bridge. Some of the Boston skyline. One of my favorite buildings. I think they are luxury apartments. I would so live there! At the end of Storrow drive when we exit off is the giant Citgo sign. That was one of my landmarks when I was figuring out how to get there in the beginning. And of course the famous Boston traffic. The only thing I abhor more than the neverending construction is the don't care what time it is or how much of a rush you are in traffic.

It's July...

A new month is here. June seemed to pass by so quickly but also like it really dragged on. Yesterday was spent doing errand after errand after errand. But my car is now registered, Paul's car had an oil change, groceries have been bought, ate a lobster roll from D'Angelos, and some laundry has been started. Today we still need to get my car inspected, go see the lawyer to sign our wills, and eat a lobster roll from J. Beaners.

Why are we eating so many lobster rolls you say?

While Paul was in the hospital he made the mistake of watching Phantom Gourmet. They did a spot on the best lobster rolls in New England so of course Paul started craving one like crazy. His wonderful friend Chris brought him one to the hospital and another one once he got home from a couple of different places. So now he is trying and comparing the lobster rolls he can get from around here trying to find the best one.

And in some unrelated sad news... Babystyle, one of my favorite stores in the Burlington Mall is closing! While I was there they had an extra 50% off all the lowest prices and I found a few things for Alayna. This striped top and capris are a little big but she looked so cute in them. They were also selling their fixtures and I got a couple of things for my studio for $17! Gotta love that. If you notice she is staring intently the other direction - she has discovered The Wiggles. Oh the horror! My parents bought her a dvd that she loves watching now.

I will report back in after tomorrow. It is going to be a long day at the hospital and we are hoping to hear the results from the bone marrow biopsy.

Talk soon!