So here's the scoop...

Paul went in today and had bloodwork, a lumbar puncture and a bone marrow biopsy. They went about as well as you can expect. He didn't have much pain afterwards and he felt good overall. The bloodwork showed his liver levels a little high so they gave him a prescription to have blood drawn from a lab near our home. Dr. Wadleigh believes it is a side effect from the blood thinner he is on. Dr. Koreth (transplant dr) wants to keep the levels in check or it will postpone the transplant.

This afternoon, someone from the hospital called because they want Paul to go in to Boston on Tuesday for the bloodwork followed by an abdominal ultrasound. And then he may possibly have to have a liver biopsy. Dr Wadleigh told him to stop the blood thinner and we are all hoping that his levels will go down as a result.

My poor babe! He has been poked from one end to the other inside and everywhere. This is just one more thing he doesn't need.

A lovely day...

Today we packed up the car with Alayna's little red wagon and took a trip to the Farmer's Market in Amherst. They hold it in the park right by the village center. It was a beautiful day to walk around and see what everyone brought to sell.

We picked up lots of goodies and Alayna enjoyed munching on her apple.

We have to leave very early in the morning for Paul's appointment in Boston. They called to change it to 8am - very early! But hopefully his 2 procedures go well and he isn't in too much pain afterwards. I will give an update tomorrow. Take care everyone!

12 out of 12...

Paul and I made it down to Boston today to meet with different members of the transplant team. We first met with Pat who was very nice and put both of us at ease. Her job was to take us step by step from the radiation to the transplant and beyond. She really did her best to not dwell on any negatives but still convey that this will be a difficult year to go through. But then we will be over it and can look back on it. We were able to ask her any questions we had about anything. She also gave us a very large 3 inch notebook with information for us to go through, mostly aftercare. She also let us know that Paul's donor is a 27 year old male and is a perfect match. There are 12 things they look for and Paul and his donor are 12 for 12. There still may be some GvHD (Graft versus Host Disease) but she said that some is actually good. It shows them the new marrow is trying to settle in and also kill any microscopic Leukemic cells that could still be there.

Paul will go to the hospital on September 4th and start the first of 2 days of cranial radiation. Then full body irradiation will follow. The first day of the rest of his life with his new bone marrow is on September 11th. It will be a simple infusion that will enter through his Hickman line. They will be inserting that during his first day there. He is expected to stay in the hospital for 4-5 weeks. We hope he can can home for Alayna's 2nd birthday on October 10th.

Thank you to everyone for continued prayers - we need every one we can get.

Our new neighbors?

Today ended a very nice visit from Uncle Ted and Aunt Bea. They drove up from Long Island to the country and we didn't want them to leave. We enjoyed some nice days of shopping and eating good food. Aunt Bea even made a shirt from Alayna's Closet! They talked about moving up here - but I think they were teasing us.

This picture was taken yesterday morning after breakfast. We really loved spending time with them and hated to see them go.

Tomorrow I will be leaving Alayna with my very nice friend Anita. Paul and I have 3 appointments in Boston with members of the transplant team, the Dana Farber counselor, and another doctor. I will report back in afterwards.

Have a terrific week!

2 more weeks...

Paul starts his radiation on September 4th as an out patient. He will receive another dose on the 5th and then be admitted into the hospital on the 6th. We still don't know the exact date of the transplant but it will be shortly after his radiation therapy.

Today he had multiple scans and had to give 21 vials of blood. His lumbar puncture went well but he said it was slightly more painful than the last time. Next Friday he will get his last lumbar puncture and a bone marrow biopsy.

We are sad that his time at home will be over here very shortly. I think we are scared of what will be happening. For me - it is almost easy to "forget" the reality of his situation. It seems I only break down and cry about it when I am alone, driving somewhere or in the shower. The rest of the time I just carry on. But I think next week the tears will start flowing again.

My bunny...

I just wanted to share this cute picture I took of Alayna. She loves sleeping with this bunny and usually uses him as a pillow...

Only one remains...

Paul came upstairs into my craft room today while I was working on an order and brought me a flower. If you remember me telling you about the garden Paul planted the day he went to the doctor to see why he wasn't feeling well. That "garden" has been forgotten about. But this one sunflower was growing. Kind of ragged - but still...

Hospital day...

Today was another day down in Boston. Nothing remarkable to mention - just the usual stuff, which is good. Next week starts the not so pleasant visits. Paul had a CT scan of his lungs today, bloodwork, and his lumbar puncture. All went well.

Have a terrific weekend!

Could it be worse?

We thought it was bad enough that our septic line failed and that it ran under the driveway. But today they came to dig up the driveway and found that the line doesn't go right in front of the garage under the driveway - but it goes right under the garage! We obviously can't then tear up the garage to get to the line. So now we need a whole new leach field. So instead of just one big hole in the driveway they dug two more trying to see where the water table was. It is too high in both places they dug so now we need to have a "design" written up and approved by the state. Translation - more money! :p

But in better news. I had Stanley Steemer come out today to clean my once upon a time creamy white sofa. It is once again creamy white. No more sippy spills and stains from sticky fingers. Yay for that!

Let's hit the pool...

Hello everyone! We hope that you are having a nice relaxing weekend. We are taking it easy and hanging out around the house. I just wanted to share some pictures...

The water was pretty cool today so Alayna wasn't exactly ready to jump in. Hannah however dives in whenever she has the chance.

We finally found a ball that Hannah can't get her teeth into and poke holes in it. She tries and tries but can't get the ball and ends up pushing it around the pool. Eden and Alayna love playing with it even though it is bigger than the two of them.

Alayna got a new fish toy to play with in the pool. She laughs when she has her fishy toy kiss her fishy floaty. She went for a quick cruise around the shallow end with her dad and she was ready for nap time. Nothing like 30 minutes in the pool to tire us all out!

They found a donor!

Our day in Boston was short and sweet.

Paul's blood levels looked good. Blood pressure was fine. And the lumbar puncture went well. It only took the one try and he wasn't in any pain. Although he didn't see the needle like I did. That thing is huge and LONG! We have to go back the next 3 Fridays and repeat the lumbar punctures each time. They want him to have a total of 5. Then he will check into the hospital early September to start radiation and the bone marrow transplant will follow. We are kind of nervous, antsy, and sad about it. Nervous because we don't know how he will respond to the transplant. Antsy because we want to hurry and get it over with. And sad because we feel like we are counting down his time at home, there is little left. But overall Paul is in good spirits. And since Paul is no longer neutropenic we are celebrating by having Chinese takeout tonight!

Hooray!

It's late...

And I should probably be in bed. We have to get up early tomorrow morning to go to Boston. Paul is dreading this visit. They called and told him he would be receiving another lumbar puncture. They are giving another dose of chemo that will spread through his spinal fluid and up into his brain. The regular chemo does not reach these place effectively. And then we go to the lab for his usual blood work to see if he needs anything.

Another joy of living in the country is septic systems and leach fields. We just had the septic pumped out 4 months ago because it was backing up. Well today - Vinnie being the lowest point of the line - started to get a not so welcome sight in his toilet. It backed up again! So we had it pumped again and they don't think it is clogged but that the line is crushed. Great! Of course that line goes underneath the driveway. So on Monday they are coming back to dig it up and fix the tube.

*Sigh*

Things are going swimmingly...

It has been so nice not having to go down to the hospital 2 or 3 times a week and just being able to relax. We have until Friday and then we must go down to Boston again. My sister is off of work that day so she is watching Alayna for us. I actually get to go in and see the doctors too. What a treat.

Today was really great weather and Paul, Alayna, and Hannah went swimming. Paul has to wear a sun hat and a shirt since he is very susceptible to sunburn, but atleast he was able to enjoy the pool. Hopefully I can get some pictures tomorrow of them swimming again.

And I have been super busy in my little studio churning out all kinds of shirts and tote bags. Today I was able to finish 2 orders and 1 boys spider shirt. It came out very cute if I do say so myself. I have been in contact with the Amherst Moms Club and will be advertising in their newsletter next month. Also I am going to meet with the president, Carrie, and give her some promos so she can disperse them to the members for me. I hope to get some business out of it. And I think I have decided to send some of my tote bags to a store in Boston. It is on a consignment basis but I hope it will help generate sales and visibility of my items. You can check out the shop here.

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.